So This Is Holland?

Leaps and Bounds

2012-01-12T12:25:00.000-06:00

My boys are learning and growing in ways I never expected. Capt. Chaos is reading- at first I thought it was just him memorizing favorite books that were read over and over (and over and over) again. However, I can now say, he is reading! Its awesome what they are learning in Kindergarten now. It's like kindergarten today was my first grade. He's also picking up Spanish here and there. Last week he did a whole unit study on the Solar System. I am blown away.

I always thought he was smart but I also knew I was biased. Don't all moms think their kids are smart? Capt. Chaos regularly says he is bored in school. Its boring! When he wakes up he didn't want to go to school but by the time the bus rolls up he's excited to get on and go. He's happy when he comes home too, although he's starving and a little cranky. Nothing a few graham crackers and cartoons can't solve :)

He brings home notes that for make me laugh though. My mother was right! I grew up and had a kid who was just like me! Here are some of the notes he comes home with:

"Talking and singing loudly in the restroom, by himself"

"Making noises while the class was counting"

"Falling on purpose in the hallway"

Sounds like he's keeping himself entertained. He's doing great academically, either at or above grade level for everything. He just needs to listen/follow directions, clean up his supplies and keep his hands to himself. He's acting like a normal 5 year old and I love it!

Hope Springs Eternal...

2012-01-06T11:59:00.001-06:00

And I'm counting on it to spring!

Holy Cow. So with all the court crap behind us, I still had to deal with everything that comes with the special needs child. He needed a wheelchair, I needed respite. MDCP was the answer.

I missed the cut off date to get into the nursing home so Little Man could get into MDCP.

I BAWLED my eyes out to Little Man's ECI coordinator, begging for help, I explained the whole sick sad situation while bawling my eyes out in a McDonald's parking lot with both kids in the back seat. (so much for as happy meal!) I made more phone calls in those 30 min. than I ever had in my life. I was telling total strangers that my husband was hospitalized, my family traumatized and if I missed my chance to get my son into MDCP I was going to go nuclear. A new low for me!

Eventually, the powers that be took extreme pity on me. Because the court problem had been brewing for awhile, the ECI people were kind of in the loop and knew I was running on all 8 cylinders for too long. Everyone pulled through for me. I really liked the nursing home too. I might check in there myself when I need to!

Aside from now finally having Medicaid, Respite is wonderful. I love having the time to ride my horse again. Very therapeutic. We were also finally able to get Little Man's wheelchair. (after 12 months and 3 denials!) He loves it. He saw "Uncle Shane" bring it in to our home & he lit up! He knew it was for him and he looks so good in it! He goes to school in it, church in it, and even Taco Casa after church in it. Capt. Chaos loves to push him in it too. Its beautiful.

He's getting so big!

The Exception, not the Rule...

2012-01-05T11:08:00.000-06:00

Our situation is the exception. Not the rule. Not every former spouse is like what I've previously described. Its simply unique to our situation. This past year as much as I tried it not to be, was the "Year of the Divorce". With all I've learned about divorce, I still can't come up with what is better- staying in a bad marriage and dealing with the aftermath or getting out of a bad marriage and dealing with the aftermath. Each option is equally shitty!

Her motive was to erase him from their child's life. All actions by her and her new spouse pointed to this. Every 3 years it was more money, less visitation, less involvement. Stating that her husband had filled the role of father. Hearing from the child how she did not like it when they did have contact. Hmmmm, if her husband was so gung ho on being his father, having already assumed the position so to speak and my husband was no longer needed/wanted.....why not just do it?

So we offered her the option. Her "dream come true", she could have it all, erase him from his life, have your husband truly fulfill this "destiny " to be his father and go through with it, a real man would be honored to raise the child of his wife under any circumstance- right?

WRONG

Silence. She never answered. We literally handed her the paperwork for her husband to be "the father" (all they had to do was sign it and file it!) and she never answered. We proved it. She wants his money, his benefits and nothing else. On Dec. 31st she did not send her traditional "send me your financials, jack-ass" email. It was always noticed that she was a control freak. She wanted control over everything, not just how my husband interacted with his child, but how her child interacted with his father.

LIGHT BULB

If he was not allowed to call his father or request to see him, he sure was strongly discouraged from it. It all made sense now! The endless activities, schoolwork, the tight schedule, the need to have everything planned out so far ahead it didn't make sense. All in an effort to "innocently" prevent them from contacting each other. Good Lord, she was probably using the same tactics on her child that she was using on my husband! I saw what it did to my husband I could only imagine what it was doing to his child.

Its one thing to treat your former spouse the way my husband was treated but to see evidence that the same is being done to his child? Sickening. The only way to stop it was to get off the merry go round. So we did. Child support and benefits will continue but to continue to pursue a relationship is proving to be detrimental to them both so we will put that up on a shelf so to speak. My husband has faith that his son will contact him when he can. It may be when he's 18, it may be when he's in college. Certainly, when he has a relationship of his own and becomes a parent. He will want to know what went on. He deserves to know. My husband will be there to answer any questions he might have.

He is a great kid; straight A student at a good school, plays an instrument, a boy scout, active in church, lives in a beautiful house in a great, safe neighborhood. Lots of friends. He wants for nothing material. He still wishes his parents were together. I'm guessing most kids of divorce do.

Towards the End of the Year,

2012-01-04T11:37:00.000-06:00

we were finally able to corner her enough to reveal her true motive. One that had played out through out their marriage, through all previous trials and finally culminated in her silence.

The kind of silence that speaks volumes.

I've always heard that emotional affairs are the worst. Now that I've seen the fallout from one I am a true believer that they are.

Its one thing to "hold a special place in your heart for your first true love", heck, I imagine most of us do! It's a completely different thing to continue to nurture that "special place in your heart for your first true love" while your married to another man! I can't even comprehend how someone rationalizes that.

So in the end, she got what she wanted. She had a beautiful child with her first husband and is now married to "her first true love". How sweet.

NOT

What about the father of the beautiful child? He wanted to be a father! What about their relationship? She had absolutely no consideration for it. She never imagined that he would fight tooth and nail for that relationship. We never imagined that she would fight tooth and nail against it. We never imagined what she would do to both of them to stop it.

The stress of it all put my husband in a place that I only thought I would end up! I now have a special needs husband. Its kinda like having a special needs child! You look for doctors, therapists, hospitals; all in network of course! You wonder if all the work and medication are going to be worth it. You ask God why?

But there is something very very different about having a special needs husband and a special needs child. I found it easier to confide in people about my child. People tend to understand more, be more sympathetic, be more...hopeful. Maybe its because they know of the baby/child with special needs and they don't know them on a personal level.

With an adult, its different. People know them. The stigma is greater. I found it harder to talk about. Harder to find just the right people to confide in. I didn't want my husband to be judged, I didn't want me to be judged. I was the one after all, who pushed to sue her back! I am just as much of the cause as she! Perhaps because as adults we tend to think that we have lived a little more and therefore can have a great hold of our emotional needs and can "take it" so to speak. Why does he need help? Surely he could handle a court mediation every three years (TX family law or she would do it yearly!) with his ex wife. Lots of men do. Most divorced men don't get to see their children hardly at all. If it doesn't bother them, why does it bother him?

Well, perhaps those other men were not married to sociopaths.

I now know why some divorced fathers walk away.

Perhaps those other men (fathers) do want to see their children but not at the cost of whats left of their financial future. A decent family law attorney starts at 250 an hour, the better ones are 350 and up. In addition to paying for the attorney, there is child support, which in TX is starts at 20% of the pay per month, unless you have remarried and the new wife has blessed you with 2 more mouths to feed, then its 16.5%. The look on her face from that factoid was priceless!

Then they have the mandatory legal maze to go through and then jumping through the hoops of fire that some ex wives set up for them in order to see their kids feels like a swift kick to the balls of their dignity and no one (in their right mind HA!) is going to voluntarily sign up for that.

I no longer blame some men from walking away.

I thought I did things right....

2012-01-03T11:52:00.000-06:00

I saw my husband unhappy & I went into FIX IT mode. It hurts to see the one you love hurt and I wanted nothing more than to fix it, make it better, make it normal. I researched attorneys, trolled on the father's rights web sites. Found a "father's rights" attorney- its all he did I learned more about divorce and what happens after than I ever cared to know. I thought my brother's divorce was the worst. Then I learned what we were up against. Has anyone read "The Sociopath Next Door"? We were dealing with several at once. So much happened & nothing happened. Over the course of a year we drained our savings, got more people involved than I would have liked and what happened????

Two lawyers had a pissing contest.

One parent got a lot less than what they wanted.

One parent was finally able to prove the true motive of the other.

The whole thing damn nearly cost us our lives.

I'm still wondering, a year later, did I do the right thing? Did we do the right thing? Was anything gained?

Sometimes, when your going through a shitty time you say to yourself, it will all be worth it in the end. Well, we are at the end and while there has been a lot of healing going on I am still wondering if it was worth it.

I hate that.

This is not easy, or pretty...

2012-01-02T10:13:00.000-06:00

But I've been told that anything that's worth it never is. I'm counting on that!

Last year, Hubby and I had decided (and I admit that it was mostly I) that enough was enough with that damn ex of his. Its ridiculous to call your child on the phone and be told every excuse under the sun as to why he can't come to the phone or heaven forbid return a call. Acknowledge a package that was sent. How about a call or card on Father's Day? Birthday? Hubby has never forgotten his; is it too much to expect a child (a pre-teen?) to remember? I don't know the answer to those questions. This is just concerning phone calls. Don't even get me started on visitation, or lack thereof.

We have done everything we can think of to have a quality relationship because we learned along time ago we were never going to get quantity.

Its disheartening, discouraging and demoralizing. Its parental alienation at its finest. Subtle enough to do massive damage yet still legal enough to pass under the radar. It sucks. I saw what it did to my husband and his son. It was horrific.

More on that as I process what went down. Now, that I've vented a bit. I need to clean the house!

so ummm, yeah...

2012-01-01T23:34:00.000-06:00

Its been awhile!

Lots has happened. Both good and, well, not so good. But in the end, its all good, right????

Someone please tell me its all good!

I've been doing a lot of work. Finding doctors, finding therapists, going to appointments, visiting the hospital, talking to lawyers, listening, asking questions....why him Lord? Why the Hell Him??????

Its not Little Man. He's been great. So great that I miss telling the blogosphere about him. He's been my shining star through all this. But I have to take care of ME. I have been in survival mode for way too long and I've decided that this year, 2012, the light at the end of the tunnel will not be a train! (can you tell I've seen a lot of lights at the end of a lot of tunnels?)

I've purposely stepped away from the blog because I had a feeling that there would be a time where this place was the only place that I could go. I could type my words raw and get out what has been renting space in my head since seeing a therapist of my own (the thought!!!) is for the foreseeable future, not in the cards.

I've stepped away knowing that I might be forgotten (but maybe not?) taking my blog address off my facebook page so family and friends I see daily/often enough will not see it (or heaven forbid be offended by it!) because in the spirit of Festivus I have some airing of grievances to do. Even though this year ended so much better than last year, better than I had even dared to hope for. I have some grievances.

I've been thinking A LOT about divorce. Specifically, my husband's. That's right. His divorce. Not mine. Right there is a big light bulb moment for me. Too bad it went off now, not 10 months ago. Would have saved a lot of grief. and money. and time. and grief. oh, and money.

Divorce sucks. It plain and simple sucks. All parties lose. The wife loses, Lord knows the husband loses, but no one loses more than the kids. They don't ask for it. The adults do. The kids just wind up paying for it. The only winners are the lawyers and I don't know how they look at themselves in the mirror. Especially with the ones I've had to deal with. And its not even my divorce!

So there it is-

I will air my grievances.

I will take "me" time when I need to.

I will celebrate my kids because they rock.

I will change my family and ultimately my life.

2012? Bring it Mayans!

Dinner was lovely....

2011-03-07T22:09:00.000-06:00

Our reservation told us to be there by 5pm but for once in my life I was 15 minutes early! Little Man was all bundled up in his stroller, 2 bags packed with toys, blankets & books for both of us. I also took the liberty of bringing my own large Sonic coffee:)

(my date)

We went inside the building and went to the desk where I asked if they were expecting us. "Oh yes! We love it when the babies come!" I was so relieved because there was a lot of miscommunication regarding this very important date & I was worried that yet again either I or someone else had dropped the ball. But no worries this time! I opted to pay going in rather than going out because just as I was so eager to get in (and eat dinner, wink, wink) I knew I would be just as eager to get out!

(our room)

We were introduced to the night nurse and shown to our room. It was spacious and fully accessible! How cool is that. My only complaint is that upon sitting on the bed I swear it was made of pool noodles. Very strange. But it went up & down & lifted the front & lifted the back all of which was very entertaining for the Little Man who giggled wildly while riding on the bed:)

(our dinner!)

You've now been convinced that I am fully off my rocker.

The above picture was the (very expensive) dinner eaten in a nursing home. Last night Little Man & I did our stay (7 hours & 1 minute!) to get into the MDCP program. He now (hopefully! there was no paperwork to sign when we left!) has Medicaid & I have respite.

So now, when we resubmit the paperwork & request for him to get a wheelchair & Insurance denies it again, Medicaid will hopefully help us get said wheelchair. I can then tell Insurance to suck it! See what expensive dinners do to me? I should stick to happy meals.

Tonight's the Night!

2011-03-06T16:16:00.000-06:00

The Little Man & I get to have a "special dinner date". It will last aproximately 7 hours and 1 minute. The cost? A mind-boggling bargain of $240.00. I wonder what's on the menu......

Details on the drama from the doublewide later!

I'm in love with the neurosurgeon....

2011-02-19T23:57:00.000-06:00

And it does not help that he's easy on the eyes to boot!

We had another awesome appointment. Its kind of nice, especially since our first, oh year was full of not so nice appointments! A mom could get used to this!

We saw Dr. H, the one who installed my most favorite piece of medical equipment into Little Man's head- The Shunt. Still working (yay! knock on wood!) The last time we saw him, he interrupted my monologue of "awesome things my son does" by asking me if he just had a seizure since he had just bobbed his now too small head. Sheesh.

Well this time, there were no interruptions so I got to show off Little Man's skills of excellent head & trunk control (for a spastic quad mind you) independent sitting (criss cross apple sauce!) eye contact, looking at people when they spoke, smiling & the piece de resistance? A high five from Little Man to the Dr. I was on cloud nine!

My questions were answered, suggestions given, and we don't have to go back until August! If things continue as they have after age 3 we only need to see him yearly unless something happens with the shunt.

The only drawback to the appt. was the HOUR and 30 MIN. wait in the waiting area. Good Grief. He did apologize profusely, he said the first day back from vacation is always a doozy. He was not kidding. It did give me alot of time to see who else was in there. Lots of food for thought. I had a great conversation with a 13 yr old boy who was told me his full name, his mother's full name & his sister's full name. He asked me my name & Little Man's name & he played so nicely with him. He said hello to Capt. Chaos & anyone else who walked by. I tried to put myself into his mom's shoes & treat them the way I would want to be treated. I hope I did alright. We talked about shoes & birthdays & coffee & hairstyles. He was a great kid:)

I also saw 2 hydro babies. Its hard to see them because it takes me right back to the NICU & how uncertain everything was. Things are still uncertain, but we can at least live a life. Back in the NICU we didn't even know when we were getting out.

Capt. Chaos sharing his sleeping bag with Little Man.

It was too sweet to see him drag his sleeping bag out into the living room & ask if "brother could cuddle wif me". Little Man just seemed to know it was special thing to do.

One of these days I will figure out how to work the flash so LM doesn't close his eyes!

Tales from the Double Wide...

2011-02-05T01:01:00.000-06:00

OMG! This monstrocity was my laundry room!

Barely organized, crapola everywhere & yes, my cat does sleep with a flyswatter, why do you ask?

WOW!

Everything is in its place! I was able to organize all my laundry, cleaning, canning, sewing & pet stuff into bins that magically fit on the shelves. Not sure about the chicken curtain, but it was leftover fabric that fit because I hate looking at "stuff". I loved throwing out the trashbag that I filled of stuff that was either useless, broken or missing something. My absolute favorite part was getting rid of the beige! Its hard to tell but the new color is "Soft Candlelight", its like a butter yellow, just bright enough:)

Even the cat is impressed. She no longer has to sleep with a flyswatter!

Soooo much better!

And that is what I did while TX was shut down for a week with ice & snow.

2011-01-25T14:01:00.000-06:00

I have sat in front of this computer so many times, wanting to blog, willing myself to blog but no inspiration comes. This entire house has come under this horrible spell of some awful cold that has 3 of us bleary eyed & coughing for weeks. Its no fun.

I have begun painting, trying to turn this dreary beige that surrounds me into something more cheery, something that will at least visually keep the "blahs" away. Thankfully I started in the utility room because I have discovered, I am terrible at painting. I guess it falls into the category of being easier said than done. This whole process is great for cleaning out the clutter. It simply has to be done before any paint can go anywhere.

To add to this "excitement" we have a family member who has been battling anxiety, depression & insomnia. There are no words to really describe how to deal with it. We try to be comforting without coddling, upbeat without seeming to be oblivious & understanding, patient & kind as the day is long.

I'm telling you now, its starting to get to me. I am normally an up beat person, I can see humor in alot a situations but this? This is more than challenging. I'm finding its re-defining my life. I'm not sure if I like that!

Anyways, some bloggers do post after post during their down times & others seem to post only about good times. I tend to step away from the blog during tough times. As much as I want to post about whats been going on (alot of good stuff too!) This has me in a bind of sorts. It consumes whats left of my energy after I'm done with the kids at the end of the day. I've known for awhile that I should seek out some form of "therapy" to de-stress but the things that I have done in the past have not brought me joy for a long while. I think that's why I want to paint this damn house. I need to try something new, even if its temporary.

Dang, I have cute kids!!!

Busy New Year

2011-01-11T13:59:00.000-06:00

So busy....
Busy filling out paperwork.

Busy writing letters of Medical Need....

Busy looking at wheelchairs & KidWalks & bathchairs...

Busy making appointments & phone calls....

Busy doing alot of thinking.....

Just when I get to the point where I have my mind wrapped around a thought or concept,

{BAM}

something happens that shakes what I thought I believed, and starts the wheels turning again.

Deep thoughts, heavy thoughts. And I'm only 11 days into the New Year!

So on to something lighter.

I'm horrible at resolutions and when I do make them, I prefer to make them on Easter, "My New Year".

However, I do like a good project. Something to keep me from thinking all those deep heavy thoughts 24/7.

I'm giving myself the entire year to do my project. I'm gonna need a year & the help of anyone who reads my humble little blog.

I'm re-inventing my house & making it into a Home.

Here's the "fun" part. (or not so fun, depending on your outlook,lol)

* I live in a very "cozy" doublewide

* The interior is bathed in beige.

Its time to be brave, (and post some pics) not beige!

Apologies

2010-12-04T14:20:00.002-06:00

I'm sorry for those of you who were unfortunate to read the comments to my last post! Apparently, the spammers have found me & have left a rather "spicey" comment. It's been removed & word verification is enabled. Again, I'm sorry if you had to see it :(

Disabled Enough

2010-12-04T13:34:00.000-06:00

Yesterday, I got a call to let me know that Little Man was "disabled enough" to qualify for our states MDCP (medically dependant children's program). Now all we have to do is wait for that darn Medicaid app to be a approved & spend a few hours in a nursing home & we will be card carrying members!

Never thought I would be happy to hear that he was disabled enough. I was sweating it because the nurse who came to evaluate him didn't sound very hopeful about his chances of getting in. He had no siezure history, tubes of any kind or problems really. He just needs constant care of the non-medical variety. Because the nurse was'nt very hopeful, neither was I. But I'm glad now! I'm familiar with the nursing home we plan on using as well. Our church has many members there & the children visit every Christmas season. Its a good place.

On a very happy note, I replaced my missing card in my cell phone & can now post pics again! Its been awhile. Y'all have to see Capt. Chaos in his Billy the Exterminator costume:)

Take That, Neurosurgeon!

2010-11-22T14:02:00.000-06:00

Little Man had his EEG. I don't think words can describe how awesome it was! He hated the leads being put on & really got himself worked up but once he was all hooked up he napped like a champ:)

The test started & while the little squiggly lines started their path all I could do was to pray- please God, please don't let him have seizures, please please, please!

I could tell from the last time we had an EEG done this test was different. For starters, his eyes were working together the majority of the time. Last time, the lines that represented his eyes were all.over.the.place. Now? Two separate lines, working quite nicely together. Score one for Little Man!

Next I noticed all the other lines. Sometimes they would be jagged, but mostly, they looked pretty normal. The tech guy (who referred to himself as "grandpa", lol) asked me if Little Man was a lefty or a righty. I had to think about it for a bit because he uses each hand rather equally (equally bad! lol!) So I said the his left side was weaker physically but he seemed to reach for thing first with his left more times than he did with his right. The tech guy then said, "That may explain it." Then he asked if Little man was missing any parts of his brain. Yes, as a matter of fact, he is. He has no corpus callosum. The tech guy says "Bingo!" I knew it. He then pointed out to me that he saw no signs of seizure activity but the test was still reading abnormal. Abnormal because it was not measuring which side of his brain was bigger or more dominant. It wasn't measuring that because one of the things a corpus callosum does is help a brain figure out which side is dominant. Little Man's brain is equal in size on both sides.

So this means that the reason why his EEG is abnormal is because he has no corpus callosum, not because he has seizures. To top off a an already great test, it looked BETTER than the first one we did! Yipee! His brain is healing & little by little, its working better. I'll take news like that any day!

A Good Appointment!

2010-10-18T23:17:00.000-05:00

For once! I needed it too!

We had our 6 month review with the Neurologist! Considering that I never know how to feel about neurology appointments: scared? happy?[not!] relieved? Hmmmm, today I was neurotic. Yup, that's my word of the day.

We check in & Capt. Chaos is just exploding in his 4 year old glory all over the waiting room. Lucky me! Once the nurse calls us back she asks all the normal questions & then after each answer, she peeks at Little Man. I understand that these are questions are read off a list but come on, after hearing that he's 2 do you really need to know his grades & if he's having any behavior problems? I told her he gets an A for effort but fails gym class, he simply doesn't move all that great! I can have a bit of fun with these questions, right? Anyways to prove that Little Man is little: Final numbers; 17 pounds, 3 ounces. 30 inches long. The Little Man is, well, little!

So we see the good doctor...I tell him about my horrible last visit to the neurosurgeon's office where I was bragging to him how well Little Man was doing & then wham! what was that? A seizure? I dunno? by the way he has microcephaly too, and ending with my explanation as to why Little Man probably has a sticky note in his file somewhere about how I yelled at Radiology about why he does not need to be sedated for a CT. Ever.

So I expressed my fear of him having a seizure & me not knowing it. He has never gone limp, gone rigid, been "absent", been non responsive, flinched, flailed, or spasmed to my knowledge. I admitted to him that I watch ALOT of youtube videos of kids having seizures, looking for Little Man in any of them & can't find him. So could we pretty please do another EEG? What a nice doc. Agreed to the repeat EEG. I understand that we may never be out of the "woods" so to speak regarding seizures due to the hydrocephalus, agenesis of the corpus collosum & a previous abnormal EEG (but no seizure activity on that either) but it might be helpful to have another one to compare to. I dunno. I'm just glad that he's getting another one.

But it was nice to be able to brag again about all that the Little Man has been up to, the beginning of commando crawling, greater head control, sitting unassisted for about 2 min. and CHOICES! Choices folks, Little Man has been making them; so much so that he now has a fave t-shirt. Really. Exciting. Stuff. Once I find the little tiny card that goes in my phone so I can get pics onto the computer, I'll be posting about all his "feats of strengths"!

Feeling Better....

2010-09-16T18:10:00.000-05:00

Actually a whole lot better! Mostly due to the fact that Little Man & I went to our very first play date! This was no ordinary play date. Each of the kids we met had similar abilities as Little Man. We met Caleigh, Wade, Kendall, Milo, & Scotty. I did not take one picture while we were there, but just picture 6 adorable kids rollings around on the floor in your mind. Seriously, it was cuteness overload! We did a toy & book exchange which was awesome! It was so nice to be able to talk to other parents who kinda walk the same path. So refreshing & I had a great feeling when we left. A huge shout out to Holly for organizing it all!!!

I also went to a Parent Lunch & Learn Talk at a church in Rockwall. The talk was given by a SN mom who has been in the "system" for 14 years. She talked about what the programs were that could help disabled people and their families at different stages of their lives. Very informative & no I have a starting point.

I keep looking at the whole wheelchair thing as a blessing in disguise. I wrote before that I really had wanted a KidsUp or a Kimba, but in the end tried for a QuickieZippie. Now, I;m leaning towards something different. I guess that while I'm still researching what would work best for Little Man, I'll have to really look over Aetna's specs for DME. Next time, Little Man will not be denied!

When it Rains, it Pours...

2010-08-17T14:57:00.000-05:00

I'm starting to think there is a target on me.

Tues. we had our appt. with our neurosurgeon.

MRI showed that ventricles are smaller & his brain has "fluffed out" a bit more. I was bragging to the Dr. that Little Man can sit for 1 min. unsupported once I put him in "position" and another inch stone, he is beginning to pull & drag his body across a mat. This is huge progress in my world.

Lest I get the chance to boast he then says that his head & brain are small which means he has microcephaly and what was that Little Man just did? That thing he did with his arm & head? I say its just how he gets his balance when he loses it. (he was sitting on the table, me next to him, supporting his hips- he was just bobbing his now too small head) Oh, I thought that might be a seizure. So I ask the good Dr. if I should set up an appointment with the neurologist & have it investigated. His answer was no, not if you don't think so.

On the ride home, radiology calls to tell me that I need to be there on Wed. at 6am for his sedation for his CT scan. I at least had the sense of mind to pull over on I-35 before reading her the Riot Act. She insisted that he needed sedation due to his age & that all sedation was done early- at 6AM. I insisted that he did not need sedation due to his disability and that I would not be there at 6AM. Why? Because I am 2 hours north, please, dear radiology department, please do not assume that everyone who goes to Cooks lives in Tarrent County. A 6 am arrival time means I leave my house at 4AM & wake up my neighbor to watch Capt. Chaos & that 'aint happening. For crying out loud our surgery arrival time was 7 am!

She said she understood & would work with me on the time but he still needed sedation. My Riot Act continued. I told her flat out that as much as it would make my heart sing for him to jump up off the table & run out of the room it was not going happen. My exact words were "Hypotonic Spastic Quads are not known for their mobility skills, we just got back from Cooks were he had an un-sedated MRI & those machines are loud!!!!"

Silence

"Can you be here around 8AM?"

"yes & thank you & I'm sorry I yelled at you"

I go home, look up "microcephaly" on google, then proceed to watch approximately 4 hours of you tube videos of kids having seizures trying to see Little Man in any of them. I then cried myself to sleep.

On Wed. I wake up & head out to Cooks for his CT & last appt. with the cranio-facial surgeon. I go over the overpass, turn onto I-35 & hear a thunk & horrible grinding & crunching noises;coming from my right front tire.

Fantastic.

I pull over & get out. At least the tire is still on. So I slowly make my way to a gas station & start calling people. Radiology understands (I'm thinking there is a big sticky note in my file that says I'm screamer, they were unusually friendly & accommodating). I get a hold of our Dr. & leave a message. Then I get a call from Hubby, who is in CA working. I tell him what happened. He's not happy.

Eventually, my father in law comes to get us & a wrecker comes to get the truck. I have a talk with the surgeon & tell him to whole sad tale & that I'm having second thoughts on this whole surgery. I'm not finding any peace with it. He understands & says what I'm feeling is normal. I think that's the first time I heard that word since Little Man was born.

Later that nite, I'm talking this whole thing over with Hubby & he agrees that we should post phone the surgery. We are still not sure if we are helping him or putting too much at risk. I call back the surgeon & leave a message saying we were cancelling the surgery on Mon. & when would you like to see Little Man next?

Here's where it gets fuzzy. I never heard back from him. I called on Wed, Thurs, & Fri. & left messages with both doctors & have yet to hear back from them. The voice mail message said all Dr.s were out of the office for an educational conference on Fri. but I thought for sure I would hear back from someone regarding the cancellation of a major surgery. I'm starting to think I did something very very wrong:(

So to re-cap:

-MRI looks good, but his brain is still bad & we might be dealing with seizures.

-Cancelled surgery but still not sure if I did the right thing.

And the cherry on top of all this?

Insurance has denied our claim for a wheelchair, for the second time.

Sheesh, I feel like I can't catch a break.

I'm Still Standing....

2010-08-04T17:32:00.000-05:00

Yeah, yeah, yeah!

(notice the "uncombable hair syndrome" we have going on lately?)

I try to get him in it daily, for least 30 minutes. On really good days, he can stay in it around 45 min. & play with toys quite nicely:) I don't know if anyone can notice, but the mark on his head is the pic, not his head. I have no idea how to photo shop anything!

Here he is in his new stander! Its called a Magician Easy Stand I guess because its a seat! Its a desk! Its a stander! Its Magic! LOL! I have had this for a few months & just now Little Man is tall enough to fit into it. I'm hoping to get him used to this so it can go to school with him. That is, if I send him to school. The thought of putting him a bus at 3 years old is making my brain itch, but that is a whole other post in itself...

He's still not sure of it since his wooden stander is more prone, this gives his body/mind a different perspective. This also makes him get tired quicker. He only lasts about 10 min. in this stander. Although he fits it height-wise, he still needs a bit taller for him to sit in it. Here it is adjusted as small as it will go & I had to finagle the straps to keep him in it.

And he's done.
Laying his head in his arms (or putting his arms over his face) has become Little Man's "sign" for "I'm done!"

Moving Right Along

2010-07-29T15:01:00.000-05:00

well......
sorta....

Through the magic of the Internet & generous parents who have been there, Little has gotten some equipment! We have been able to purchase a pony gait trainer at a price I could not say no to- even if it did not work out for him! He is still short for it, by maybe 2 inches even though I have adjusted it as small as it would go, so I had to look around for some modifications so he could use it.

Moon Shoes! I pulled out my yoga bricks & traced his shoe over one of them and cut it away so it fit:) It took 1 brick to do both shoes. The material that the bricks are made out of is perfect- firm foam & the fact that its purple is not too bad either. I first tried velcro-ing the shoes to the foam but it wouldn't stick so in the end duct taping the shoe to the foam worked best.

Now, he fits in it a bit better, a little puzzled, but not upset. because we have carpet in the house the pony works best on our porch. He has not taken any steps on his own but I work him in by moving his legs/feet for him. I want him to associate this piece of equipment with moving. Wish us luck!

I love how Capt. Chaos needs to "test drive" everything we bring home for his brother :)

Waterway Babies

2010-07-21T10:34:00.000-05:00

I've wanting to do something different with Little Man therapy wise for awhile now. As everyone knows, I live in the boonies & have to drive at least 45 min. to get anywhere worthwhile so I was looking into something I could do at home.

I have wanted to do a hydro type therapy with Little Man and was looking into places to take him however all the local pools are outdoors & he has an exceptionally hard time keeping his body temp regulated in the heat. If the temps are high & we are outside for as little as 15 min. he will puke. I'm scared that this body temp regulation problem he has may lead to a siezure so I've been keeping him indoors as much as possible, venturing out only in the shade or early morning or the evening. He seems to do much better then. Unfortunately, pools are closed by then:(

I've seen the waterway babies set up on several blogs & after checking out her website I saw I could afford it! WooHoo! I ordered the pool & neck ring & recieved it in record time. Its something that when colder weather comes I can set it up in the house even:)

To give everyone an idea as to the size of the pool. I set it up next to our older style pack n play:) Its made of a vinyl-type material with supports so it can shape to a tub, but for me it works much better out on our porch!

Its so big around that I can fit in it with Little Man (no pic of us, lol) This means that Captain Chaos (who loves water, pools, bathtubs, puddles, you get it) can join his brother in the pool:)

I've heard that CP kids are either "sinkers" or "floaters" when you put them in the water. Little Man is a floater. The above pic is his usual position in the water. The water has to be very very warm for his body and legs to relax. Once they are relaxed, he can kick some. He's a little puzzled by it all but he has not cried or showed any sign of not liking it so we try to do this once a week.

So far, I can get him to stand in it and bounce around a bit. The ring is the best thing so far for forcing him to do something else with his hands than chew on them. That frustrates him the most it seems. He loves to chew on his hands but he has to learn that there are lots of other things to do with his hands:)

I like this set up. I think its a great way to bring water type therapies to a home environment where the kid can feel most comfortable. The drawbacks are that the pool, while small as far as pools go, is large as far as home tubs go. I estimate this pool to hold around 80 gallons of water. In the pics, it is set up on our porch where the drain is attached to a hose so the water can be used for the shrubs planted around the porch. Currently, the pool is set up in the wash stall of the barn since that is the coolest place on the property and closest to the larger water heater. Filling this pool up in our house will use up every drop of hot water in the house so for now, it works best in the barn.

I LOVE the neck ring. Hindsight being 20/20 I would have just got the neck ring and done all the water therapy stuff in the tub since he is still small. The ring helps keep his mind on doing something with his hands, helps him to be in the bath tub with his brother for more interaction with his brother. However, I like having the pool as an option for using outside. The best 115$ I have spent on a home therapy system:)

A Milestone (of sorts)

2010-07-21T09:59:00.000-05:00

Little Man has officially doubled his birthweight :)
As of this morning he weighs 18lbs. 2 ounces. His heaviest ever!

Good bye GI doctor, you were a nice gal, but your nurse & dietician need to be on the same page as you:) Our confusing journey with your office is done:)!

There's No Denying It...

2010-07-04T18:24:00.000-05:00

Ordering your child's first wheelchair is a kick in the pants!

I researched wheelchairs till I thought I was going to become one. Barbara had an excellent primer on wheelchairs awhile back and her series was my guide book. I approached Little Man's PT and said that I was ready to order his wheelchair, what do I do next? I was secretly planning to get a high end stroller & deal with the wheelchair later. My own special form of denial, LOL.

I really wanted a Kimba Spring or a Kids-Up Bingo. I loved the fact that they looked like a stroller yet "sent a message" with its design that let people know that the little one sitting in it had special needs with out screaming "my kid is disabled!". I downloaded both manuals, looked them over, thought this is what I was looking for but since I really didn't know what I was looking for (except for a flat seat) I was going to let the PT and the DME rep give their sales pitches as well.

The one thing that was holding me back from going all gung-ho on either the Kimba Spring or Bingo was that most insurances will only let you get a chair once every 5 years. If I had the money, I would just get an adaptive stroller and call it a day & worry about the wheelchair later. Alas, like most people I know, I don't have unlimited money- bummer. So I had to make a decision based on the potential developement (or more frightening, no developement) Little Man would under go over the next 5 years. No Pressure there!

So we meet the DME rep who from here on out is now "Uncle Shane". What a nice guy. Greeted me, and more importantly, greeted Little Man & spent some time holding & talking to him. I appreciated that gesture. He listened to my needs and concerns for support. We needed something that was sturdy, we are HARD on our equipment, we do not have pavement within 300 yards of the house except in the barn. I want to be able to take Little Man everywhere and the chair has to be user friendly & be able to go to on a school (gulp) bus.

He said we could get a Kimba, (or a Bingo) they do all the above but don't do all that great on school buses or farms. Then he said that there are 2 kickers- 1.) Most insurances won't cover 2 bases and a Kimba has a stroller base and a high/low base (I would want both of course) and its hard to come up with funding to get both since most insurances don't want to cover both bases. I really don't want to fight with the insurance company over something like that. I would rather save my engery for getting more coverage for therapy. One other thing to keep in mind is that with an adaptive stroller its harder to customize it. With a chair, the lateral supports can be moved all around, if we don't like the head support we can simply change it out. Same for the foot supports. Also, Little Man is so very tiny- all the way around. So in the end, if I was not sure where we would be 5 years down the road and options/adjustability were going to be a major factor, I really needed to be looking at wheelchairs- the kind that scream "disabled kid on board". No more denying Little Man's disability now!
Uncle Shane had pulled up a type of pedi wheelchair on line for me to look at (great, more tiny pics!) Here is where I gulped and asked about a Quickie Zippie. It was really the only wheelchair I looked into and only because I think Charlie has one. Since I ~~stalk~~ follow him, I know Katy has done a ton of research on wheelchairs, saving me time and alot of grief.
After the measurements were done, I jokingly asked if it was going to be the world's smallest wheelchair- He is barely 10" from hip to hip! Uncle Shane looked at me & said that there was one other wheelchair out there that was smaller. Sheesh!
So Monday I get to make my first status update phone call. They are expecting the chair to be ready in Sept. Here's hoping:)
So lots of decisions being made around here. I have one more hurdle to jump before I think we are clear of the drama around here!

2010-07-03T22:29:00.000-05:00

The Good News:
Little Man has gained weight. He now tips the scales at 16 lbs. 1 ounce.

The Bad News:
I have also gained weight. Would love to 10 lbs.

In Other News:
I'm over any "perceived judgements" regarding our decision to go ahead with a 2nd surgery for Little Man's head. Surgery is Aug. 16. While it still scares me, I'm more fired up over our GI putting our "round" Little Man in a "square" hole designed for typically developing kids.

We have a new computer & I'm having an awful time finding my pics! Will have to work on that. Little Man is actually chubby for once!

Well, that sucks!

2010-06-19T15:35:00.000-05:00

I now have a lovely set of very expensive, one of a kind, custom made book ends.

In other words, the helmet is no longer working to shape his head. They have taken Little Man's head as far as they can take them. While his "towering vertex" (medical term snagged from his file) is reduced, it still is very prominent as well as the back of his head still being very flat. Sigh. This means that surgery would be needed to get his head & therefore his brain to a more correct shape/form.

I remember after agreeing to the first surgery, both doctors did say that it would most likely be 2 surgeries but we were all hoping that after a year of helmet therapy a second surgery would not be needed. I was sooooo hopeful! The first surgery did wonders, his head looked like a Klingon's and was lumpy all over his temples- cute, eh? Also, his coronal sutures were nowhere to be found. It was an easy desicion the first time around. After the surgery he was able to really kick his legs around which was great- he could see his feet as he kicked. His head then became just plain funny shaped. I was really praying that the helmets would do the trick but after a little more than a year of wearing them they did not get the back of his head to round out or to stop the progression of the "towering vertex".

Geez, I feel like if we go foward with the surgery we are vain parents for wanting a "round" headed baby. I mean, he's doing well enough given his disability. But if he's doing well enough don't we owe it to him to be as normal looking as possible? Is that a horrible thought? I mean, kids are going to poke fun at him for enough things, am I weird or vain for wanting his head to be normal-er looking so kids (and adults) won't make comments? What if he were not doing as well as he is now? Would we still want the surgery? Does this make me vain or selfish?

It's still considered "corrective surgery" and therefore covered by our insurance. Does that make a difference? And what about the anecdotal evidence that surgery like this helps? Parents of cranio kids are reporting improvements in all areas after this type of surgery. I was one of them, Little Man moved his legs quicker & with more purpose once his brain was allowed to grow in that direction. This is not easy. I'm thankful for the ability to make rope & tie knots.

I've Been Trying to Find the Words....

2010-06-02T10:05:00.000-05:00

To how we (or mostly I) have been feeling lately but Barbara said it perfectly.....

I've been making a rope...

I've been tying a knot...

And I've been hanging on.

I've just about had my fill of drama around these parts!

Happy Mother's Day!

2010-05-09T08:48:00.000-05:00

May your day be full of blossoms:)

Because at the End of the Day...

2010-05-07T19:14:00.000-05:00

I don't have enough mouths to feed....

This little guy is a baby Blue Jay, also known as the "Bully" of the birdfeeder. My father in law found him in the grass, no where near a tree so he scooped him up & brought him to me & said "Maybe you can do something with it?"

I found a wildlife rehab person who specializes in birds...in a town that I discovered after the fact was 2 hours away. The prospect of driving 4 hours in one day with 2 kids was not appealing.

So I will feed this guy until I can find a rehabber (is that even a word?) closer to us or someone is willing to drive out to the middle of nowhere to come get him.

Now all I have to do is tell my everlovin' husband when he comes home from work that there is a baby blue jay in our bath tub.

Eatin' Good!

2010-05-07T16:22:00.000-05:00

Little Man has been eating real good this past week. So good that 5 out of the past 7 days have been a little over 1,000 per day!!!! You can still his all his ribs, and he's not back up to the weight he was at when he got sick, but his belly is ever so slowly filling out. He get a TUMS everyday as well as his usual "rock star" vitamins. He also started doing something that he never really did before- he CRIES when he is hungry!

Yeah, most kids cry when they are hungry. I would feed LM for what felt like continuously through out the day in an effort to get him to gain weight, but he never really cried or fussed for food. I simply never eally gave him the opportunity? Well, now that his tummy is feeling better, he wants to eat huge amounts of food in one siting & is eating more regularly as well, like 3 meals a day kind of regular. He even sleeps better! I'm loving this new attitude he has been wearing:)

Please Pray...

2010-05-06T19:18:00.000-05:00

For a sweet little girl named

Cayman

Stay strong Cayman!

Well.......

2010-05-03T00:19:00.000-05:00

After spending the day at Cook's on that Monday that feels so long ago, I was no closer to an answer, but I did have a few "a-ha, so that's how y'all do it" moments. We showed up for our upper GI fasted & ready to go. After a solid weekend of me trying to convince Little Man that Elecare was not so bad & him refusing everything I hid it in, he was very suspicious of the bottle of white stuff that they wanted him to drink 6 OUNCES of- I almost laughed. I knew he wasn't going to have any of it. I was able to remember my NICU feeding lessons & was able to get 2 ounces into him before they got crunched on time & we had to do the test. Capt. Chaos & I waited outside in the hallway. When the test was done the radiologist said that it went fine, he did drink enough of the barium stuff & they got a good picture of it because.... his stomach emptied so fast, he said that what ever goes into his stomach leaves it very fast. Maybe this is why he's having problems? I thanked him (he was a real nice older guy) & collected out stuff & headed off to neurosurgery since we still had oh about 4 hours till we needed to be in the lab for the rest of the tests.

I thought it would be a good idea & now that I know I am super niave I will go about things alot differently if I am ever in this position again. You see, Little Man still has his original shunt. In hydro babies its very important that shunt failure or infection is ruled out before you look at anything else. Little Man was exhibiting several of the signs, but those signs also point to belly troubles. A little part of me knew it was his belly that was bothering him but I had been drilled in the NICU that I had to keep an eye on that shunt & if anything happened I should have it looked at. So I went there & asked if any neurosurgeon was around, or any of our NS's nurses. Luckily, the nurse who knows us best was there, but whne I asked about getting his shunt checked (they can "tap" it with a needle to test it I've been told) She said that since no dr. was there (some conference? Other clinics?) if I really wanted to get it looked at I was to go to the ER. UGH! I did NOT want to hear that- but now, loking back, it makes sense. I just did'nt want to camp out in the ER with my perfectly healthy 3 yr. old & my "maybe" healthy toddler (who does'nt toddle) I also did'nt want a new, potentially random doctor who did not know Little Man calling the shots. I guess I'm a snob. I wanted his dr!

So, I declined, & went up to Labs to see if they could take me a little early & to apologize that he hadn't pooped yet so we couldn't do a stool test:( They would have to do what they could with his sweat & his blood.

So from the Friday of his GI appointment to Tuesday Little Man was so out of sorts & NOT eating. I had our ECI dietician come out & see him, I had our ECI co-ordinator come out & see him. I took him to the pediatrician & told him to "Find Something" that was wrong with him that we didn't already know. p.s. he's healthy despite being "failure to thrive" I got a student dr visit before our pedi came in & then I got a lecture on vaccines after it was discovered that he is behind on his shots. I argued that he gets his flu shots but I'm delaying everything else because he is delayed. It makes sense to me & I did'nt care at that point who thought I was crazy. I left several dramatic messages on several people's voice mails. I had the neurosurgery department in a tizzy. In between visits, phone calls & tiraids I reaserched everything that had to do with failure to thrive, poor eating, fast stomachs & food allergies. I came to the conclusion that my Little Man has reflux. Signs of it? Poor eating, not eating even though I KNOW he's hungry, food allergies (he's got them) then he gets "unusual"- a constant dry cough, congestion even though his lungs are clear, hiccups, trouble drinking liquids, a constant grimace. Hmmmmm..... I called my dietician and pitched her my idea. We took the soymilk out of his diet, added rice milk, removed gluten (again!!!!) and with the GI's blessing, gave him a TUMS.

I had a new kid. I believe that 30 minutes after he had the TUMS, the heavens opened up & angels sang. Little Man ate. And ate and ate. He slept through the night & woke up happy & ate some more. This whole experience peeled 2 pounds off him that he could not afford to lose- he was so weak his left eye got "lazy", its only in the past day that he's strong enough to focus 2 eyes at the same time but I have him back. My poor baby. Hopefully now, we can get him better reflux meds, but Tums can be used as a calcium supplement & it tastes better that what we were using.

Does it answer all my questions? NOPE! His sweat teat came back inconclusive to anything. His bloodwork revealed nothing spectacular things were still in the relm of "normal". I have lost a little bit of faith in this GI doc though- she said his allergy tests came back negetive for dairy & borderline for celiac disease. I can buy the celiac disease, but for as long as I can remember as soon as he has anything with dairy in it, he pukes it up & turns bright red. That to me says "allergy allert!"

We have a long way to go. As of tonite, he is 14 lbs. 15 1/2 lbs. is the magic weight where he is able to bear weight on his legs & arms of his own will. It's like the desire to move meets the ability to move & he does amazing (to me at least!) things.

Dang! He's Soooooo Cute!!!

Feeding Woes...

2010-04-17T22:44:00.000-05:00

I think we have hit a wall. On Monday, Little Man has his BEST therapy session EVER. Normally when his PT comes, he prefers to "check out" by closing his eyes and participating as little as possible or he does this pathetic little cry that makes you feel like a horrible person for making him stay on his tummy. :( But on Monday it all changed- he was active & present and did stander work & reached & sat up and initaited and accepted weight bearing on his arms while sitting- something we have been trying to convince him to do for-ever. We were all on cloud nine. I felt like I got figured out- the right food, given at the right time, with the right vitamins/supplements equals a happy & energetic baby. Presto!
Then on Thurs. he started his day with a spit up. Not alot, I did'nt sweat it, spit ups happen all the time & this was small. Then he spit up his second bottle, then his third. He was able to keep a small amount of oatmeal down for lunch & I thought all was ok because he ate a big (for him) dinner. Well a few hours after that, it all came back up & he heaved for awhile after:( Poor baby:( All I could say was "Well, at least have that GI appointment in the morning!" So yeah, we added another doctor to the list because we love hanging out at Cooks.
She was a nice doctor. Agreed that he was thin (ya think?) and that for the amount of calories that he takes in he should be heavier. The good news for me was that he only lost 6 ounces with all that vomiting- he's still above 15 lbs! She signed him up for a stool analysis, sweat test, blood work & a barium cocktail so they can see how his food travels through is digestive tract. We go back Monday morning for that & we will be there all. day. long. She also gave us some Elacare to put in his bottles & I met with their dietician. We had a bit of communication difficulties as I had to remind her 2x that I was just told about 20 min. prior that we were getting Elecare because she kept asking me how I was making it. She then kept asking me what he was eating & how many calories it was- Luckily I was prepared. I have been keeping a food journal for several months & keeping track of what goes in, how many calories its & how many spit-ups he's had. Its not the first time I've had a run-in with a dietician at Cooks, I'm sure it won't be the last but they sure do make you feel like your not feeding your kid:( I then got a lecture, complete with handouts on how to obtain Elecare from the company. This stuff is gold- its like 40$ a can. Crazy! You want to know what's even crazier? Little Man hates it. He won't even make an attempt to swallow it. He makes his broccoli & spinach face and lets it dribble out. I've tried it straight up, mixed with soy milk, lessened the concentration, even mixed it with oatmeal & his DHA that is strawberry flavored. No Go. So now what?
I did get a good vibe from the GI dr. herself though. She really took the time to go over with me what & how he eats and the frequency. He has some weird eating habits- I did stress that when his feeding/food is right I can see him grow before my eyes, developmentally, cognitively, physically, its amzing, but when he gets a case of the spit-ups it sets him back ALOT. That is what has me worried. How can he be eating for so long & doing so well & then have one bad eating day & be set back weeks> He was literally half the baby he normally is during the exam.
I am hopeful that Monday will bring some answers. I may even swing by the Nuerosurgery clinic to see if they can squeeze him in for a look. We'll already be there all day, might as well add on another dr. looking at him, right?

what's going on in there?

Getting My House In Order

2010-04-13T21:14:00.000-05:00

I've spent the majority of the winter reading many books about special needs kids, their therapies, their siblings, their parents & their relationships. Ir was alot of reading. Thankfully, I had Mighty Leaf Tea to drink while reading compliments of Ellen's blog contest Thanks Ellen!

I am NOT a schedule person. I like to be free to do what needs to get done when it needs to get done as well as be free to do as I please with my day. I joke to my friends that I am a type B+ personality :) However, full day school will be here in 1 year and I have a HUGE side project I would like to begin when full day school begins so to prepare for the inevidable, I have decided to begin some sort of "scheduled routine". I am tackling it one persaon at a time, begining with Capt. Chaos since he is my most willing and ever present victim, lol.

Capt. Chaos in his favorite hiding spot in the playground

We always have had house rules in our family, none were written down & most were simply commonly understood. I have tried chore charts in the past but failed to keep up with them & I dreaded sticker time- it could take easily 45 minutes to pick out just. the. right. sticker. Also, to be honest, he's a pretty good kid. 8 times out of 10 he does what he's told. We really only have trouble with him when we go out to eat- or go out anywere :P. Currently, we eat at Braum's, Taco Casa & Sonic. I know, Sonic should'nt count- its a drive-in.

So with that said, I sat down & made up some Family Rules, posted them in a prominent place & we read them every day. Really, we read them every day. Capt. Chaos asks me to "read those words to me" everyday:) He melts my heart!

Its the standard family rules fare, ask permission, listen to mommy & daddy, eat at a table & wear clothing. Yes, I had to have that in a rule since his favorite outfir at the moment is his birthday suit:)

And since I have failed at the chore chart, I have discovered the Good Bean Jar, compliments of another home keeping type blog. Basicly, he starts the week with "x" amount beans. Beans are added for good jobs or for good acts. I want to catch him being good in a sense. Beans can be taken away for disobediences, poor behavior or choices. When he reaches "x" amount of beans he gets a special surprise- a trip to the zoo, mueseum, something that still needs to be determined. I liked this idea because by adding more beans it can then "grow" with him. I plan on starting sometime over the weekend. I still need to decide on the amount of beans.

So, how do you all deal with your toddlers? Does bribery get you everywhere? How about time outs or taking away privledges? Hubby & I have kinda hit a wall on this one & this is our plan to help keep him growing up in a good citizen fashion. I'm curious to hear how other parents do it.

The World's Cutest PJs...

2010-04-13T18:41:00.000-05:00

Have offically been outgrown.

Really, have you seen a cuter jammie tushie?

This is My New Year's Eve...

2010-04-03T22:59:00.000-05:00

Yup! Tonite is my "New Year's". You see, I am not a winter person- at all. In fact, its a good thing that I now live in TX & no longer live in NY because this past winter was brutal for me. I know now that cold weather & lack of sun shine do a number on my morale. It's horrible! Its all I can do to get the minimum done. I'm much more suited to Spring and ever since I became born again & accepted Jesus I have used Easter as my New Year's Day. Its much more fitting for me to begin new resolutions, traditions, and goals with Easter- the ultimate New Begining. I mean, people are born ever day- Only ONE has conquered sin & death. Happy Easter indeed! And Happy New Year!!

While I have been MIA I have been reading & researching & to be honest, if I read one more article, blurb, tweet or quip about nutrition, I'm gonna barf. I think I actually did when I saw somewhere that the scent of strawberries can slow a siezure. The big thing I learned is read the research, but look at my child & take my cues from him. So I follow his favorite tastes to the blood type diet- he stops losing weight, success! I remove dairy from his diet, he stops spitting up, more success! I read how diet can change behavior, slow or even stop siezures (Little Man does not have siezures but I live in fear of them!)so I take out gluten - no easy feat to perform since I live in the middle of nowhere & gluten, well, lets just say that its everywhere. And here is where I hit my snag- he began to lose weight again! He went back down below 15 lbs & I damn nearly wept. I mean he's 19 months now & I struggle to get calories into him. Soooooo, I went out & I bought jarred baby food. Previously, I had made all my own, thinking that was best for him. Nope! He now back up to 15 lbs. 9 oz. & he happily eats pasta, and basicly anything else that comes processed in a babyfood jar. I even fed the gerber baby, just like Kristin :)

Also, I have decided to take the "al a carte method" to therapy. After reading about & you tubing just about every therapy there is, I'vce decided to do a little bit of this & a little bit of that. Why? I have no money & live in the middle of nowhere:) I do have a checklist of things that I do have access to, chiropractor, Feldenkrais, massage therapy & hippotherapy. So those are what I will persue in addition to our wonderful ECI therapists. Really, I am very lucky to have landed in this county in particular. Little Man's therapists are wonderful:)

There are lots of other things going on too, health insurance, special-ed preschool, potty training, jobs, ex-wives, old parents, date nights, birthday parties, I tell ya, the fun never stops around here.

We are still here:)

2010-02-26T11:37:00.000-06:00

Back when we still had the snow, I was able to get Little Man strapped to my back so he could get some outside time too. I think he liked it. He looked like a mini "michelin man" when I was done dressing him! With all the clothes he was padded enough that he fit real well in the back pack:)

More standing pics! For the most part, Little Man will tolerater it really well when he's in the mood- like 30 minutes at a time. When he is not in the mood- well, we might be able to make through a reading of "Green Eggs and Ham"

Not sure if these pics can show it, but my wonderful Hubby made a few adjustments to the stander. The chest piece, we decided was a bit too high & let him "cheat" a little more than I like. He also lowered the middle leg piece so he was less inclined to "sit" on it. Our PT & ECI coordinator were so impressed! His nutritionist was thrilled as well. He will not only be strengthening his legs & getting upright, it also helps digestion! :)

Speaking of my fantastic Hubby, here he is riding my horse. Way back in Jan. it was my birthday & he said I could splurge a bit so I got a new saddle:) I hav'nt ridden western since I was in college but my Sarah (that's the horse's name) did'nt seem to mind. She and my other horse Emily have had quite the cushy, work sporadically lifestyle since the kiddos were born. Hopefully when Capt. Chaos stsarts school full time I can get more time to ride. Its truly cheaper than therapy:)

Matching Jammies! I saw these in Cabella's on our way back from Ft. Worth one day & HAD to get them! This is the first pic of both boys in them at the same time since previuosly, Little Man thought they were only for spitting up on:( Now that we have diet figured out, very rarely will he spit up:) This was taken last week, while both kiddos were recovering from that darned RSV. Tahnkfully, Little Man escaped with a runny nose, but Capt. Chaos got the brunt of it. I'm so glad they are both back to normal again:)

Anyways, tha's what we have been doing, recovering from RSV. I have also been helping out with a fundraiser at our Church. Its over 100 yrs. old & the main sanctuary needs to be re-bricked in accordance with the historical society since it is an historical structure. This Sunday we are having a dinner for the congregation to inform of the repairs being made. I hope we can raise the $$$ we need. I love my church & would be heartbroken if they had to close the Sanctuary:(

Snow, snow & yes, its still snowing!

2010-02-11T23:40:00.000-06:00

I last ventured out of the house at 5:30 to give the horses hay for the night lock in the chickens (who never really left the henhouse anyways today) I took lots of pics of the snow because it so rarely snows in NTX & to get 6 inches is unheard of- and it was still snowing when I came inside:)

His first snowmen!!!!

Standing is FUN!

2010-02-11T23:30:00.000-06:00

So far, Little Man is liking his stander. He makes the most pitiful faces when he is done with it though. I do believe it has opened up a whole new world for him though- he just seems more interested in what's going on around him when he's standing. Usually, he is most interested in what his big brother, famously known as Capt. Chaos is doing...

He aint heavy, he's my brother! Capt. Chaos loves to "help" Little Man look at something & to "fix his head". He's really quite gentle with him. So sweet:)

His head control has really improved- much quicker than I even expected. He holds his head up for about 15 minutes at a time when something interesting is going on. Otherwise, he rests it on his arms or the stander frame.

Its especially sweet to see how excited that Capt. Chaos is about Little Man standing. He says cute things like "He's almost as tall as me" or "Now he can really watch me jump around"- something that gives Little Man the giggles everytime:)

Sorry for the lack of modesty with Capt. Chaos. He just prefers to be in various states of undress.

2010-01-29T18:39:00.000-06:00

My wonderful hubby has built Little Man is very own stander!!!

Our ECI services here in the rural north texas area are super about providing equipment provided that they have said equipment. To my knowledge, they have one stander that a little girl is currently using. I was told that she will turn 3 sometime this summer after which it will be out turn to have it. I was happy with the idea but I really really wanted to get him standing sooner- like yesterday sooner. Anyone who has flipped through any of the hundreds of "special needs" catalogs has probably gotten a case of sticker shock. I knowe I have, I mean thousands of dollars for a stander? The cheapest one I found was $600 and did'nt look like it could do the job all that well. Others, were uber expensive, but had all the bells & whistles. I was continually drawn to the wooden ones. They looked fairly straight foward, and dare I say, "easy" to make. I gathered all the catalogs that had standers in them & showed all the pictures ofthe wooden ones to my husband and said, "what do you think?" 2 weeks later, construction began. 2 weeks after that- the stander was finished. It is completely adjustable. We can move side pieces farther apart, remove the head rest, he can face foward or backward, be at a 30 degree angle or a 10 degree angle (or any angle in between!) and add padding as we see fit. I feel like the possibilties are endless! And best of all, Little likes it. For at least 10 minutes at a time before he starts to whine.

I showed it to our PT & she was really excited. She showed how to better place the straps (old belts) and where padding will be most beneficial. To start off, we are placing him in it on his belly (prone?) at the 30 degree angle until he can tolerate about 30 minutes. This will help with head control and reaching. Once he can do those 2 things easily, we will work on getting him in it on his back & at the 10 degree angle.

Thsi piece of equipment has me so excited I can hardly stand it!

My Husband Is My Hero!

2010-01-23T21:24:00.006-06:00

story & pics to follow.....:)

Who Wants Some Broccolli & Spinich?

2010-01-18T17:56:00.000-06:00

I'll take that as a no...

OH AND GUESS WHAT?!?!?!

2010-01-13T19:34:00.000-06:00

We have a record- today we had our appointment with our super cool cranio-facial surgeon to discuss helmets & head shapes & progress- its all good. However, I did startle a few nurses with my whoop! whoop! Yeah! song when I laid Little Man on the scale, in a dry diaper, without his helmet.

The scale read 16 POUNDS 7 OUNCES

Here's to all the Olive Oil & Coconut Milk

and everything else I've been pouring into him.

Its finally sticking to his ribs!

WOW!

2010-01-13T19:22:00.000-06:00

WOW!

This is awesome! My blogging friend Sarah, mom to Violet, has chosen 10 bloggers to recieve the Lemonade Award and So This Is Holland is one of the nominees:)

I have enjoyed reading about Violet's adventures for some time. In fact, hers was one of the very first blogs I found about hydrocephalus. Reading about how Violet & her family have dealt with her diagnosis' has really helped me get a glimpse into what I could be in store for myself. I am grateful for Sarah & everypone else that I stalk, um, follow here in the blogosphere.

**Rules for the Award**

*Put the Lemonade Logo on your blog or in your blog post

* Nominate at least 10 blogs with a great attitude or gratitude

* Link Nominees to your post

*Let your nominees know about their award by leaving them a comment on their blog

*Share the Love & link to the person from whom you recieved the award:)

The Blogs I Nominate Are:

TherExtras

Chalk and Cheese Life as a Teenager with Cerebral Palsy

Caleigh's Corner

A Little Piece of Heaven

Women's Marriage Ministry

Bird on the Street

Fighting Monsters with Rubber Swords

Lillian Grace Danielle

eat.make.live

The Deal with Disability

So there are my nominees. I apologize for any links that don't work- I literally just now figured out how toi put them in : /

2010-01-09T16:28:00.000-06:00

It has been a crazy holiday season here. I have always said that my kids were not going to believe in "Santa", I would tell them all about how Christmas is Jesus' birthday and that is the real reason we give & recieve presents. And for the record, I did do that but everywhere we went, there was Santa! We saw him at church, we saw him at school & the ECI christmas party. Everywhere we went, Santa was sure to be found. I have more pics of my kids with Santa than I thought were possible. Capt. Chaos kept asking me if Santa was going to give Jesus any presents. It was like he was trying to figure out in his head how Santa fit into the whole Christmas is the birthday of Jesus. Maybe next year he'll understand it a bit more:)

These pics I think turned out adorably The Church had left these decorations up after their Christmas Concert and the lights were on so I snapped these after school let out:)

I love his expression here. Its the "I won" look. He was such a fuss while I was taking his pic before Capt. Chaos got out of class. I wanted a pic of our new skill- sitting un supported. I know he can do it long enough for me to set him up & then snap a quick pic- I wasn't even looking for a quality pic, just some photographic evidence that he can do it. But he wasn't having it- no way no how. I had to support his head. So I set him up, said, "Fine, You Win!" & he flashed me this super grin:)

You can't tell me he doesn't know what's going on :)

Did Anyone See...

2009-12-15T13:40:00.000-06:00

The loonie lady running and screaming?

Or was I too fast?

Not only does Little Man NOT weigh 15 lbs. He lost an ounce!!!! He weighs 14 lbs. 13 ozs. How, pray tell, does a non-mobile 15 month old kid not at least maintain? Has Jack LaLane been coming into my house at night making my kiddo do push-ups? I feel like the day after Christmas! We have a few more foods & combos to try & we get to lay on a scale again in a month. Maybe I can get him to gain a measly 3 ounces? I guess we'll see. At least his still as cute as ever. :)

Jan. is going to a big month for us. We see both the nuerosurgeon & cranio-facial surgeon as well as starting weekly PT, in addition to our monthly weigh-ins. We also have lots of planning to do to get to Duke. I'm hoping to get there before Spring.

Weigh -In tomorrow!

2009-12-13T15:14:00.000-06:00

I am so ready to put this kid on a scale! If he does not weigh at least 15 lbs. I am going to scream like a loonie. I have become food obsessed. I have been pouring over recipes, reading labels & shopping at some pretty crunchy stores. I hope it helps Little Man to gain some healthy weight:) I have been following a blood type A, dairy free diet for Little Man for about 3 weeks now. I was finally able to use up the last of his multi-grain cereal a few days ago so he has only been gluten free for a few days & I can't really tell a difference with anything just yet. We still get spit-ups, but only occasionally & nothing like what he has had in the past. I have also learned to be careful with what he eats with his vitamins- (Floradix liquid children's multi-vitamins, I love them!) if he takes them in his bottle or in his food its not such a great outcome. I have been syringing them into him a few minutes before he eats & that works out great. Luckily, he can still take his DHA (Nordic Naturals children's DHA:)) in his morning bottle. I think he likes the strawberry in the morning:)

I have weighed him while I weigh myself & according to our very old, non digital scale, he's less than 15 lbs. but not by much. He looks fuller in the face & he got one dimple back but I want to see him on a scale before I do a happy dance (or scream like a loonie)

I have started the ball rolling to get his cord blood re-infused. I filled out paperwork to get a copy of his medical records to Duke. I have contacted the cord blood bank to fax our information over to Duke. They said they did, Duke said they did not. GRRR. Oh and another "great" thing about the cord blood bank? It failed FDA requirements & is being closed. We were notified that our cord blood was now going out to CA, to Family Cord Blood Bank. This had me flipping out! I really only have myself to blame. When I was still pregnant I should have just called Duke & had it stored there & saved myself the trouble. The only good thing about it is that Family Cord at least has a dedicated line for parents who have cord blood from the old bank that are eventually going to have it go to Duke. Also, it will cost less to have it shipped from LA to Duke than from MS to Duke. Not sure how that figures but I saves us a couple hundred dollars. Anyways, I have several phone calls to make. I'm just glad that Hubby is not flipping out about this. He was so upset while I was pregnant that any talk about going to Duke ended in a screaming & crying so I let it drop. Once Little Man got the diagnosis for CP & the neurologist encouraged us to try everything we could get access to and/or afford I really pushed it with him. Thankfully, he has been on board & we have been able to really talk about it which is a nice change of pace:)

My latest pool noodle experiment- still a work in progress...

But he is a happy, clean boy!

PICTURES!!!!

2009-12-07T10:58:00.000-06:00

We are trying to encourage Little Man to stand up for a bit. He can do it for about 2 seconds at a time, but he can do it:)

Capt. Chaos at the TX State Fair. He LOVED the tractors!

Capt. Chaos & I at the Ft. Worth Air Show:)

A new skill! We have been working on this for so long. He can now hold his own bottle. Granted he needs to be reclined and it can't be more than 6 ounces, but he can do it!

He is so proud of himself :) !!!!

2009-12-07T10:45:00.000-06:00

We have been hard at work eating & gaining weight here at Chez Little Man. I hope we have found a winner diet plan for him:)

I have been researching diets, specificly diets that will help a neurologically compromised child to gain weight. I have found that I am not alone in wanting my child to gain weight. Apparently, this is a common issue in CP kids:(

I was researching a diet that is geared towards a person's blood type. Little Man as well as Hubby are type A. Type A's do best on turkey (the only meat LM will tolerate), sweet potatoes (his fave!) Friut like pineapple (recently recommended by dietician) and avocados & olive oil (added to almost everything he eats). Dairy was recomended in moderation. Breads were recomended in moderation. The really neat thing is since Hubby is also a type A, I was asking him what he liked to eat & he liked all of the type A food & the things that were not so good for type A's, gave him an upset tummy. It was neat to have an adult to test it all out on.

Next came my research on Glutin/Casien free diets. These diets are used alot in ADD/ADHD kids and autistic children. Alot of parents have had great success with this diet. The most "famous" person to have success with this diet is Jenny McCarthy's son- his autistic behavior improved (or decreased?) when she pulled gluten & casien out of his diet. I will also say that her son also got INTENSE therapy in conjuction with the diet, but she states in her books that the diet was very helpful in clearing up his physical issues. Her books are a great read, even though neither of my kids are autistic it really gives you food for thought on diet, vaccines, therapy, and how to best be an advocate for your child. I highly recomend her books to special needs parents.

So after reading about GF/CF diets, I read about the Feingold diet. This diet is used alot by ADD/ADHD kids. Its an "all natural" type of diet that utilizes as much organic, chemical & preservative free food as possible. The theory is these kids are super sensitive to the chemicals & preservatives in food, thus it makes them hyper. The only person I know who uses this diet is Dawn Meehan (her button is on my side bar) She has 6 kids and 2 are considered "hyper"; traditional drugs for ADHD gave her son dangerously high blood pressure so she switched to the diet & she says that her son is much happier now. The thing is that everything either has to made from scratch, and or be bought at Trader Joe's or Whole Foods type of stores. It can also get pretty pricey.

There is also a Ketogenic Diet for kids who have seizures. I am hopeful that Jill, Matthew's mom will post what she learned about it. I think it will help lots of kids out there.

After gathering all the info I could, I decided on a Type A dairy free diet for LM. For Capt. Chaos I am working on a GF/CF diet. (I have been told he is "hyper" so I figured I would try a diet out on him too) Gluten free will be a process though. Why? Because just about everything has gluten in it! I would have to literally throw out 90% of the food in my house & start over. I hate wasting food so we are going through what I am calling our "modified fat tues." I will use up as much of what we have & as I replace, I will buy GF/CF items.

Fortunately, I do enjoy cooking & I love baking. Unfortunately, I will have to order some things online as the local grocery & Walmart do not carry what I need to go GF/CF. In my reading online I found 2 great websites in case anyone out there would like to read for themselves if diet may help their kiddos.

http://www.elanaspantry.com/

http://www.5$dinners.com/

Both are great sites!

He gave me hope...

2009-11-25T17:14:00.000-06:00

The neurologist, that is! I LOVE our neurologist. He walks into the room & I always get a good vibe off him. All four of us went to the appointment, but as usually when Capt. Chaos goes with us, he gets antsy & that drives Hubby crazy & he usually winds up waiting in the truck for us. That's what happened on Mon. so Hubby & Capt. Chaos missed out on seeing Dr. M examine Little Man. Sigh.

Anyways, he reviewed our last EEG which showed no siezure activity but his left eye was slower that his right eye. He asked if I thought he was having siezures & I said I was pretty sure he was not. We reviewed signs of siezures & shunt failure/infection, more so I think so that he would know that I knew what to look for in the future. He said that siezures can occur at anytime, so I have to be aware of what is "normal" for Little Man, so I can notice anything amiss- similar to how I have to be aware of his shunt. He did not feel the need to repeat the EEG since I did not report any changes to him.

He then did his reflex tests. Oh my goodness, did my baby smile! As soon as Dr. M spoke to him, he smiled so hard he almost lost his paci! Little Man responded to all of them, most of the reflexes were weak though. I did expect that, he is weak all over. I was told that was hypotonia- a generalized all over weakness. I agreed & attributed it to the hydro. He then said that Little Man was spastic in all of his limbs & his trunk (he arches his back alot) which led him to the diagnosis of mild spastic quadriplegia cerebral palsy, however, his left side is very slightly more affected than his right. Thats what kinda floored me. I always thought that CP kids who were spastic were not hypotonic- not so, they can be both at the same time; just like Little Man:)

He told me of some drugs that could control the spasticity but he was really against using them for Little Man because they were all basically muscle relaxers. Not so good for a hypotonic type kid. He did say the reason he was telling me about them was for my information, perhaps in the future they could do him some good & he wanted to let me know of what would be there. I thought that was nice.

I did tell him of one feeling that I have been having about Little Man. I said that I felt like I was playing a game of "beat the clock" . Like I only had so much time to pour into therapy & treatment before the clock ran out & when the clock stopped, where ever we were in developement, is where were we were going to be...forever. Its a thought that stays with me all the time, I feel like I am fighting time. I loved how Dr. M really listened to me just pour it all out. Its hard to talk to hubby about these feelings I get because he tends to go off the deep end & panic right along with me & thats not helpful. I'm so thankful I have great dr.s & this blog to let it all out on:)

What Dr. M said next is what gave me hope- he said, yes, there could be a clock, its just not running nearly as fast I think it is. (I had the idea that 3 was our "clock stop") He said that based on what he was seeing in Little Man that day, I had until he was about 6 or 7 before we could begin to worry about any clock in my head stoppping. He said that some things could change simply because he is still growing & getting therapy. He encouraged me to try everything, stem cells, diet, PT, OT, ST, VT, music, animals, basicly he didn't say no to any therapy because in the end, when that clock in my head does stop, at least I will know that I tried everything that was within in reach to do to help him and that would help me find some peace in whever we are. Just hearing him say go for it (to all the things I wanted to do for Little Man) was awesome. So often we hear "Well we can try "X" & he might do "Y" but there is always that if or maybe to make you think that it might not work. It was totally inspiring to hear a dr. say go for it!

So plans are in the works to get a concrete plan of action that will expand on what he is already getting. 2010 better fasten its seatbelt- we are going to make it a big year!

Thank You Jill!

2009-11-24T14:45:00.000-06:00

For the perfect distraction to my life as I know it now:) I have been tagged!
Jill, Matthew's mom tagged me as an authentic mom (aawwww) I am flattered:)

I think I am supposed to write 5 things that I feel make me authentic & then tag 5 other moms. So it it goes:)

1. I still pinch myself when I hear Capt. Chaos call out "mommy!" I am blessed that out of all the eligable moms out there, God chose me to be his & Little Man's mom! 4 years ago I had no plans to be a mom, now I can barely remember life before my kids:)

2. I do what I have to do- to get Little Man the right doctors & therapies, to get Capt. Chaos to wear clothing at the dinner table. To get all of us to church on time. To get out of my own way, I do what I have to do.

3. I'm not afraid to cry, scream, pout or throw a pity party for myself & only myself. I'll give myself half a day to really wallow in it before I pick myself up & re-enroll in Google University so I can arm myself with information.

4. I share my experiences as a mom. The good, the bad & the ugly. Thankfully, most of it is good:) I love to talk about both my kids & I'm getting better at talking about Little Man to complete strangers who happen to comment on him.

5. I embrace my experiences as a mom, the good the bad & the ugly. While I may not love all the experiences I have had, I know that they were given to me by God for a reason. Even if that reason is to convince Capt. Chaos that wearing underwear at the dinner table is a good thing!

That was harder than I thought! I now pass the tag on to the following authentic mommies!
Candace, Faith's mom
Katy, Charlie's mom
Marcella, Nathan's mom
Ellen, Max's mom
Holly, Caliegh's mom

A New Diagnosis...

2009-11-23T15:56:00.000-06:00

cerebral palsy

i need to let that sink in for a bit.

2009-11-17T00:17:00.000-06:00

Well, I have been slacking alot on Little Man's blog. Our family has been in a bit of a slump. We are working on it, but marriage is hard work-at least our marriage is young so we can try not to let bad habits grow into big problems.

We also have been in a feeding slump. Little Man will eat really well-meaning, opening his mouth for the spoon, using his tongue to work the food to the back of his throat & then swallow. He was even eating a large volume (for him) of food within the mythical "30 minute window" where he wasn't burning more calories by eating than he was actually consuming. He even gained(GASP!) weight. In early Oct. he was 15 lbs, we were working our way onto the chart!

Then we started hitting little bumps in the road. He would get gassy, have a hard time pooping & he would fuss. He is NOT a fussy baby, not even in the NICU with all the pokes & contraptions he was hooked up to. He started to literally reject not only a spoon, but his bottle as well. So I started leaving out things he was either gagging at (pretty much anything green) and experimenting with his milk(which he was spitting up more & more often). I tried whole, organic, name brand, store brand, lactose free, adding cream or half & half (we are trying to make his meals "calorie dense" for weight gain). He let me know that apple juice, squash, carrots, sweet potatoes & olive oil are what he will eat and not even in all that great amounts.

4 days ago, I cut out all dairy from his diet after what seemed to be the hundreth time he spit up that day. He got squash & pedialyte to settle his tummy & give me time to regroup before I called the dietician in tears. On Sunday I gave him some Soy Milk, fortified with calcium & DHA. OMG- it was like I had my Little Man back! I had no idea that just changing his "milk" would make such a big difference. He gained back all his strength & was tracking objects, & smiling & laughing again. He even ate 5 ounces of squash & sweet potatoes. I can't remember the last time he did that in one meal.

So today, we had our monthly dietician appt. I told her all my feeding woes & even some realtionship woes (Have I mentioned that I love the ECI people who see us?) She listened to it all & while we both agree that its not a flat out milk allergy, its definately an intolerance & not only are we going soy, we are going with coconut milk as well! I had no idea that it has like over 100 calories in 2 ounces. We are also going to try some pineapple since it has enzymes that help with digestion since yogurt is now off the menu. I've also expressed Little Man intense dislike of meat. It seems that turkey is the only type of meat he will tolerate. Every thing else makes him gag or cover his face, he's not even swallowing it. To give an added protien we are adding beans- black, pinto, & chick peas. She told me abou t diet acording to blood type. I looked into it before but nixed it because I got his blood type wrong- I thought it was AB & they are not supposed to have sweet potatoes & squash- Little Man's top 2 faves. But after the process of elimination (I am an O & Hubby is an A) we figured he was an A+ so I am going to try that diet for him again. Hopfully we have turned a real corner & will start some serious weight gain. As of today, he was 14 lbs. 14 oz. and was 28 and a half inches long. He is a stringbean!

This whole process has got me thinking that nutrition is alot more important than I ever thought. I mean, Little Man would have a day of spitting up that would follow with 3 days of complete weakness. It really makes me aware of just how much strength it takes for him to go through his daily workout. If he's not eating right (or enough) he's too weak to do any meaningful therapy, if he can't do his therapy, he can't reach his milestones. We have alot of work to do, but I feel much better now that my suspicions were confirmed & we have game plan.

Birthday Pics!

2009-11-07T14:55:00.000-06:00

We have been so busy worrying about jobs & doctor appointments that I forgot to post birthday pics. We had a quiet, thankful family cake time.

one small homemade birthday cake:)

Daddy helped to support Little Man. See how the boys wiped the icing off the cake? :)

My awesome Hubby!

Capt. Chaos is just now at the age to really undeerstand what birthday is & cannot wait for his 4th!

One happy year old boy!

We were sweating it there for awhile...

2009-11-07T14:30:00.000-06:00

But we are going to be OK!

Hubby is a pilot. A very good, accomplished pilot. He has flown everything from a tiny little cessna to an Airbus 370 (I think I got that number right) He loves to fly. It is truly part of his persona:)

The thing about being a pilot for a living, is that the airline industry gets the flu when the ecomony gets a cold. Fortunately, Hubby currently flies a business jet & has largely been ok in the industry until some senators & congressmen (rightfully) chastised some auto executives for flying business jets to D.C. to ask for money for their failing businesses. This put business jets and the people who pay for them in a very. poor. light.

His company has had to undergo a furlough. This is airline speak for a layoff, but they can hire you back when the company is doing better financially. Furloughs always goes in senority order, last hired is the first to be let go. I have been in heavy prayer that Hubby will be not be furloughed. His job provides our health insurance & allows me to be a stay at home mom. I don't like to think about the changes in our family's life if we both had to work and fortuantely, I won't have to for at least another year! We found out on Thurs. that Hubby has enough seniority to stay in the company & keep flying:)! This is a huge weight off all ourt shoulders, especially Hubby. He has been in a funk for several months now & today he was really able to breathe a sigh of relief & blow off some steam on his dirt bike!!

I can breathe a sigh of relief too, not only do I feel like I have my Hubby back, we don't have to take Little Man back top see the neurosurgeon or the cranio-facial surgeon until January!!!!!! And.... we got the green light to put his helmet back on!!!

I have been very, very thankful these past few days:)

On Halloween...

2009-10-28T21:28:00.003-05:00

A child can be anything he or she wants to be!

(my response to Barbara's Halloween contest ending - oops! the 29th!)

Barbara over at TherExtras is holding a Halloween contest. Y'all should go on over there & give her a look. She is a gem in the blogosphere. She asks what are the benefits of costuming for a child. I immediately thought, ooh I can make this really therapeutic for Little Man! I could use pringles cans to support his legs & tp tubes to support his arms & then wrap him in aluminum foil & call him the tin man! Or I could wrap him up in several rolls of tp itself & make him a mummy! Or, he could just be himself:)

Then life got in thew way & my ideas went on thew back burner until our Church's fall festival when I really wanted to make a costume for Capt. Chaos so he wouldn't be the only kid there with no costume on. I asked him what he wanted to be & he said "Cowboy", so I thought, oh easy! He has a cowboy hat & boots so I just found a belt & a plaid shirt & brought it all together thinking I have such an easy boy to please. Upon seeing what I had assembled for him he said again "Cowboy" & pointed to the dog. Our dog's name is Cowboy. Sigh. He was a good sport though & went as a cowboy. Honestly, there were so many games there to play I doubt he even noticed other kids were in costume:)

So it got me thinking. Costuming is great anytime of the year:) Most days kids are expected to "be" something- well behaved, dressed, social, etc, etc. Halloween is the one day kids can be anything they want, even the dog:)

These are the versions of "Cowboy" Capt. Chaos tried on for The Fall Festival

2009-09-25T11:50:00.002-05:00

Happy 1st Birthday !!!!!!

to my wonderful Little Man:)

He used to be

2009-09-23T22:03:00.003-05:00

The Neighbor's Dog

But now,

He's Our Dog....

Welcome Home Cowboy

Many thanks to our wonderful neighbors, the Smith Family for allowing Cowboy to become part of our family

OK, last pool noodle post-

2009-09-20T22:10:00.003-05:00

I'm wondering if Blogger is liking me tonite? It won't let me unload lots & lots of pics- anywhoooo

Noodles are great for helping Little Man fit into things that he is simply too skinny for. Like his high chair. We had a regular high chair, from when Capt. Chaos would submit to sitting in one, but Little Man would just swim in it. Literally, thank Goodness for straps or he would have slid out of it!

So I bought his feeding char that works sooo much nicer. He does fit into it nicely with no added support, however, recently, he grew longer (taller?) and lost 2 pounds :( from being on antibiotics for these blasted abscesses which has made him a bit weaker in his torso. While we are working on gaining weight & strength, a noodle has come in quite handy:)

All strapped in , ready for the tray to be snapped on...

Here he's looking to the right, which is a good thing- he tends to favor his left side, so we spend lots of time doing things to make him turn his head to the right:)

Perfect! You can't even tell he has a helping noodle:) He's got his thumb & looks pretty pleased with himself as well:)

The last thing (for now) that we use noodles for are for tummy time. We place a short piece under his chest/armpits so he has a head start in getting his head up. Its works great & he likes drooling on it too. I don't have a pic of that but I did find some pics of a new skill we have been working on......

First, we get a little lift to get us started.....

Then he can hold the bottle on our own!!!!!

He's been working on this for a while. He can only hold a smaller bottle & even then, he can only do it when its half full, but he can do it!!!

Fun with Pool Noodles Part II

2009-09-20T19:53:00.003-05:00

More fun with pool noodles!

(because blogger would not let me up load the swing pics!)

Little Man LOVES his swing. He loves loves loves it. And from what I have been reading on other blogs, swinging is very good therapy. Its vestibular stimulation & every baby needs it:) And since Little Man loves to swing, who am I to deny him?
I did run into one problem though. I don't have the traditional indoor swing that lots of babies have. Capt. Chaos was more of a rocker & vibrating baby, so I have a chair that does that. The only swing we had was a little tykes outdoor swing, courtesy of Grandma on Capt. Chaos' 2nd birthday. Little Man is still too small for it, but he can sit up in it- with the help of some noodles:)

This is what he looked like the first time I put him in the swing...
The blankets weren't really doing it for him:(

Hmmm, not too sure about this...

Yeah, not too sure about it....

But with the help of a noodle, it can look like this.
I put one on each side with velcro sticky tape and cut to size a piece to go on the red piece for a little more support.

Here he is snug in the swing, but not too snug. He is pretty good about holding on once we get to swinging:) The great thing about noodles is the hollow center. Even when it rains, the water just drains on through:) (See that darn stitch abscess?)

SUCCESS!!!!!!

We like it now! I love how this really shows hoe well he can sit up & really see whats going on. This is one of Little Man's favorite things to do. I try to do it several times per week. Now that its not hot as blazes out & not raining & we have our hernia fixed as well as the abscesses, (whew!) I would like to do this every day with him.

As Promised...

2009-09-20T16:31:00.005-05:00

FUN WITH POOL NOODLES!!!!!

at bath time:)

I use pool noodles with alot of Little Man's therapy. I also love to modify stuff I had used with Capt. Chaos with pool noodles so that I can use them again with Little Man.

Here is your standard baby tub. Great, but when your baby is loosy-with his body, you need alot more support. I first cut a noodle to size & put it around the head part of the tub. This way, when he sits upright in it, the pool noodle can support his head :)

Then the rest of the noodle is cut to fit across his lap. Kinda like he's in his own lil' race car:) Little Man was never really fond of bath time until I was able to rig this contraption up. The lap noodle comes out, but the head noodle I hot glued in place. Hopefully, even though its going to get wet, it will stay in place:)

All that tub excitement got him tired.....

Since these pics were taken, I have glued noodles to the other end as well as to the sides for extra support. I also have a not slip mat (the kind you put in kitchen drawers) I put over the whole shabang to really keep him in place:) Little Man has (very) unfortunately lost some weight & therefore strength being on antibiotics for the stitch abscesses so he needed a bit more support.

Really?!?

2009-09-20T15:09:00.003-05:00

I needed this like I needed a hole in my head....

On Tues, we had a follow up appt. with our neurosurgeon, regarding these darn stitch abscesses that keep recurring. They seem to get better, heal over & just when you think they are gone, POW they open up with more pus than before. On Tues. I asked if we could do some sort of scan or ultra sound to see what's cooking in his head. One CT scan later, it was determined that it was a fairly large pocket of infection that would need to be surgically excised & cleaned out, followed by a heavy rotation of antibiotics... The good news? It did not involve bone, only soft tissue & that soft tissue did not include the dura or his brain.

sigh...

(warning: the last pic is of the stitch abscesses...not for the queasy....)

Looks comfy, no?

ChildLife brought Little Man this musical toy, I think he liked it! :)

Practicing tummy time!

Vancomyacin (I'm sure I mis-spelled it) does a real good job of creating a diaper rash, Little Man had his tushie aired out alot:)

and for anyone who was wondering...

just what a stitch abscess looks like.....

here is what we have been dealing with......

These two holes are what we have been dealing with for about 2 months, off & on. I have been told they would have occurred even if he did not have a helmet on his head. They are not touching the inside of his helmet, but because the helmet creates heat & sweat, it can exacerbate them. We have been seeing some really neat results with the limited time his helmet has been on so we are bummed that it will be awhile until he can wear it & continue the journey to a semi-round head.
So now, the holes have been surgically cleaned out and stitched back together loosely- with stitches that are not absorb able in the hopes that if there is continued draining, the skin will stay open long enough for it to drain out & then heal over. Hopefully, this will be the last of the abscesses.

He's been hard at work...

2009-09-05T22:21:00.002-05:00

Here, he found my glasses and picked them up! He would look at things that were around him & kinda sorta reach out to them, maybe even rake at them with his fingers, but never really showed any interest in picking them up. Until now!

He picked them up, waved them around and had a great time looking at them. So far he has only done this with a spoon:)

There is also a good shot of his helmet here. Its above him & it come in 2 pieces. Once we get his stitch abscesses healed I'm going to ask the helmet people if they can either drill some air holes in it or remove maybe a piece from it. I dunno, we'll see:)

But here is our big accomplishment!

Head control!!!!!!

He has been able to consistently pick up & put down his head several times each tummy time session. He has the most control when he is on him tummy & sitting supported, but very little when he is in his Bumbo which makes me wonder why that is so.

Its also a big thing for him to do this with (of all things) his eyes open. You see, he works so hard to lift his head that his eyes are usually squeezed shut from the effort. Its really hard to "reward" a baby with a toy that is bright or lights up when his eyes are shut. We used lots of cheering & the dog's squeaky toys (thank you Mabel, she was a good sport!) Until he was strong enough to lift up his head & keep his eyes open. WOW! that opened up a whole new world to him & I think then it really "clicked" for him:)

His therapists say it shows great strength for him to not only lift his head, but that he puts it down slowly & then lifts again repeatedly. Alot of babies put their heads down rather quickly, but he puts his head down as slowly as he picks it up. :)

Next up......

Fun with pool noodles

and

Prop Sitting!!!!!

Were Hae I Been?! (part II)

2009-08-28T16:20:00.003-05:00

Well, things have been a little interesting to say the least!

First, I have to say that I was able to meet a WONDERFUL blogger! Little Man, Capt. Chaos & I went to Denton to meet Barbara, author of the phenomenal blog TherExtras. It was awesome to be able to meet a fellow blogger and spend a wonderful afternoon chatting about life (special needs or not):)

Barbara, thank you so much for meeting us. It was wonderful to share a great meal & spend some time with someone who at first meeting, I felt like I could have talked to for days. You are awesome and your blog not only educates me but inspires me! I hope we did not offend anyone when Capt. Chaos sat at the next table & drank ketchup

Here is a picture of our great meeting! Thanks for sending the pic, Barbara & thank you to Younger Teen who took the pic!

This meeting was one I had looked forward to & I am so happy that we were able to meet in person. It was a great day!

Several days after however, I had an existential melt-down. Of the superior kind....

We got a letter from our insurance company (of whom I love- really, this company has paid for more stuff than I thought could even be charged for- and happily) stating that Little Man's helmet was determined to be a cosmetic type of device & therefor not covered since we had not done 3 months of non-invasive therapeutic corrections such as placing him in different positions throughout the day/night. Excuse Me?!

As a side note, this letter came after a visit with my step-son which went as well as could be expected, but still had it fair share of drama. For those of you who are not in a "step-family" situation- every visit has drama (both good & bad, we tend to welcome it all around this house) so with the residual drama still in the air & then the arrival of said insurance letter TS(really)HTF. Both Hubby & I really went off the deep end. It was not. pretty.

So once we went off the deep end & had a good swim in all that it has to offer, we got out & realized that we still had the insurance company to deal with because Little Man's helmet was/is expensive. I mean I know medical equipment was expensive, but wow, yeah. And it would be awesome if it were covered. It was time to put aside all hurtful thoughts/feelings/sayings (if your married you know what I'm talking about...) and deal with the issue at hand. First thing Mon. am (don't you just love how letters like this always come on a Fri, after business hours so there is really nothing to do about it except swim in the deep end until Mon.?)

We have since learned the following about helmets:

*they all have to be fabricated in an FDA approved facility, ours was.

*all helmets have to be made within 2 weeks of the first scanning(measuring) otherwise, there is a good chance the helmet won't fit/work. Ours was.

*All post-op helmets are covered under insurance!!!!!

* they have to re-scan throughout the time the kiddo wears the helmet because where you think its working , it may not be, but it could be working were you never really thought it could work:) This was a pleasant surprise for us:)

*In the Dr. prescription for the helmet, s/he is supposed to state the type of helmet (cranial remolding orthosis, pediatric rigid w/ soft interface), an approximate length of time the helmet could be needed (12 months), and most importantly (for the insurance company!!) the reason for the helmet (key words being medically necessary)! Everyone had a copy of the prescription except for us & the insurance company. UUUMMMMMM, did they want to get paid? Or was this helmet going to be a random act of kindness?

Our insurance company, lacking this vital piece of paper, had to assume that we simply wanted a helmet for a perfectly normal child's mis-shappen head- which we did, but Little Man's head "had craniosynostonosis & cranial malformation associated with post-hydrocephalus shunt decompression. The patient had a significant turrichalic head & came in for surgical, cranial vault restoration repair of the same." This explanation was what our insurance company was looking for. How did we get this needed information? HA!

We had an appointment with the helmet people, an appt. that was make last week- we show up- oops, your not in the computer, we can't help you. You'll have to re-schedule/come back. Oh, it takes you an hour & a half to get here? too bad:( Hubby & I are seething at this point & neither of us is making any attempt to restrain Capt. Chaos in the waiting room(heehee) So hubby shows the front desk people the insurance letter & I am not kidding- I heard her say "yeah we have all that but we can't do anything about it". I was speechless. Hubby asked who was supposed to submit paperwork to the insurance company, I was told when we started that they, the helmet people were & that is correct. They had the paperwork, It was their job to submit it & they didn't. Hmmmmm, we asked for a copy of everything they had & left after cancelling out next appointment. We are not going back until this insurance issue is cleared. We then went straight to Cook Childrens & through ourselves at the mercy of the Nuerosurgery dept. A very nice 7 knowledgeable nurse? receptionist? said she understood our situation & submitted the paperwork right then & there, confirmed that the insurance co. received the paperwork & oh, by the way, these folks have been dealing with this for a while now, could this be taken care of right away? Our insurance company said no problem. I knew I loved them. We are now just waiting for re-vised paperwork and confirmation that the helmet is covered:)

Thank you , The End.

In the meantime, Little Man has been working hard! we are working on prop sitting, holding his head up for longer periods of time (every second counts!) and really exciting- locking elbows & knees! He laughs at Capt. Chaos & Barney and loves to interact with people. God has blessed us so much!

Now that my meltdown is over, I'll be posting more often & with lots of pics- OMG do I have pics! See you later:)

Where have I been?!?

2009-08-02T17:22:00.003-05:00

No where really... but lots has been going on!

* we got a dishwasher- this is huge for our family. I love to cook, but I hate washing dishes! Now I have free time to cook because I'm not washing dishes and I have more counter space because its not being eaten up by a dish rack!!! I baked 4 loaves of bread this week simply because I didn't have to wash the bowls & had the counter space!

*One of our therapists from ECI has moved on to greener pastures:( We will miss Theresa terribly. She perfect for helping us set goals when we started & giving us exercises and ideas on how to meet those goals. Thank you Theresa, you will be missed & hope you check in on us here every once in a while!

*My sister in law had her baby shower!!!!! Remember when I was freaking out & praying like crazy for not only Little Man's successful surgery but also for a yet to be born baby? Its my sister in law's baby! And every one is doing great. She has about 6 weeks left to go & I am so excited to meet my new nephew I can't stand myself!

* Little Man's helmet is still a go. He is tolerating it very well & I am certain I can see a difference already. Our next appointment we will re-scan his head & compare that image to the one when he was first measured for the helmet. Hopefully, we can see a difference- a good difference!

* Leaps & Bounds have been made as far as development with Little Man! I wish I could point to one thing we did to say "That's it! That's what helped the push forward in his development!" But we have done so many things, big & little that I can't really say what exactly it is.

*My step-son is here!! Hubby & I have missed this guy so much, but Capt. Chaos is over the moon happy to have his big brother sleeping in the top bunk. It is such a joy to have this wonderful boy back in our home. Our visits are not nearly often or long enough:(

*I am addicted to FaceBook! I can't believe how many people I have been able to re-connect with. Its great to catch up from the comfort of my home & not the awkwardness of a HS or college reunion. I also cannot get enough of FarmTown & FarmVille. Please send help. Also, if anyone wants to be my friend (or neighbor in FarmTown!) feel free to look for me, carla matthews cowdrey. I'll probably playing FarmTown :P

*I am getting ready to meet a fellow blogger! If all goes well, I will be meeting the author of a blog I have followed since I found out what Little Man would be bringing with him. Hopefully, I will be able to post some photos of this event!

I think that about covers it... I'll be posting some pics of Little Man's leaps & bounds hopefully in the next post- he is amazing! I find myself praising God for them all the time!

2009-07-22T22:11:00.002-05:00

Speed Racer

(all we need now is a little girl named Trixie!)

Tomorrow we go back to Hanger Prosthetics (great guess Barbara!) for our first helmet check. In my extremely un-educated guess I would say so far so good. Its not a tight fit, but I knew it wasn't supposed to be due to the gaps where we would like his head to grow into. I'll learn more tomorrow & come back with a better report:)

Yesterday was a big day for Little Man!

2009-07-18T19:53:00.005-05:00

He got his helmet!

Here he is waiting for "The Team" who will be putting his helmet on & doing the initial fitting.

First, they put this fabulously rouge-y colored lipstick on his shunt & one bone stitch that hasn't finished being absorbed yet. This is to mark the inside of the helmet where they need to shape it out.

Then they carefully placed his head in the bottom (back?) part of the helmet...

Then the top (front?) part of the helmet...

This went on several times over the course of about an hour & a half. They were constantly fitting, checking, re-fitting, re-checking until they were satisfied with the fit. Everyone seems to think that his head is an unusual presentation- I hear it alot- the helmet does not touch his head over his forehead or the area just above it. It also does not touch his head in the back- these are the areas that we want his head to grow in to & fill out, thus avoiding the second surgery (which I still feel won't be necessary) It simply puts slight pressure on what remains of his "cone"- which is really just a "bump" now:)

In between the team coming & going I found a treat for myself in the magazine rack!

I am a HUGE fan of "The Boss". I eyed this issue a few months back in the grocery store but could not justify the price- not even for Bruce- so I passed & forgot about it until I saw it sitting there, for free! For me to read. I love it when God rewards me like that! I left it open to the Bruce article for the next mega-fan to find:)

Then, it was back to business!

Here is what we ended with. A happy baby, with a well fitted helmet, ready for action.

We have big plans for a Speed Racer logo on the front of the helmet!

Found while looking through the Methodist Hymnal....

2009-07-18T11:51:00.002-05:00

#409

The things, Good Lord, that we pray for, give us the grace to labor for"

I found this awhile ago while trying to find the next hymn to sing at church. It has stuck in my mind ever since- so I took that as a sign to share it.

He's Just So Darned CUTE!!!!

2009-07-11T23:56:00.003-05:00

I melt when he gives me his giggly grin! And the faux-hawk is natural- really, my father's hair (whom Little Man is named for) does the same thing!

Aside from being cute (all the stinkin' time) we go back to Ft. Worth on the 17th for our helmet! I am so excited & I am praying that it helps him. He has made such huge strides since the surgery- he can lift his head & he is starting to push up with his arms! All because the cone has been reduced & it no longer acts as a counter-weight. I am so hopeful that this will be worth while for him.

Happy Birthday!!!!!

2009-07-11T22:38:00.007-05:00

Happy Birthday

to my Buddy,

my Pal,

my Captain of Chaos...

my First Born Son,

Joel

He's 3 today!!!!!!!

We celebrated with....

lunch at Chili's,

a haircut with Daddy

(& the camera ate those pics! argh!)
a trip to our local Zoo, and a trip to the local elementary school playground.

I swear, this is the best playground at a small town school ever!

Slides are always a hit with Capt. Chaos:)

As is climbing :)

Meanwhile, at the Zoo,

The Jack rabbits were keeping cool by cuddling frozen water bottles!!

it was around 100 degrees here!

The Great Horned Owl was giving passers-by a scary eye,

There is a tortoise under the leaves, he was feeling shy...

The Giraffes were "necking" & yes, I'm blushing just typing that!

and the Ostriches were hanging out in the shade.

2009-07-03T20:34:00.002-05:00

Here are some pics from his new chair from Target :) Its made by The First Years.And showing off a new skill!!

He wa so proud of himself! He even made a few swipes to his mouth to sorta feed himself:)

I cannot BELIEVE....

2009-07-03T12:25:00.002-05:00

How incredibly stinkin' busy I have been!

OK, so my little chicken? Her name is Sophie & she is a Black Australorp. She broke her femur- doing what? I have no idea! How does a chicken who previuosly never really wanted anything to do with any other living creature break a femur? I guess it doesn't matter now since we took her to the vet (you didn't think I would have "had her for dinner" would you?) & she is splinted & currently enjoying the AC in house while she convalesced in a hamper in the tub. All she has to do now is take her medicine & lay me 187$ worth of organic, free-range eggs & I'll call it even. On the plus side, she is now very personable & is as friendly as Francine!

We had another follow up with both the CFS & the NS and both are very pleased with Little Man's progress! We got a prescription for a helmet and got scanned for that yesterday & we don't have to see the NS until OCTOBER!!!!!!

Yesterday's appointment for the helmet scans were.... interesting. Not just because we are getting a helmet for Little Man & the whole process of making one & then getting it fit & watching it help his head (we hope) is interesting but I had my first experience with a cranky toddler & a cranky baby at the same time during an appointment. I mean, it happens to everybody, it was bound to happen, I had it coming being that we had just left one appointment & instead of going to McDonald's & home we went to another office(!) I simply was. not. ready.

Capt. Chaos proceeded to sprawl all over the floor of the exam room & spread toys (his that we brought, theirs that they let him play with, probably some of your as well!) He became fixated on a fake foot that was on this poor woman's desk and tried to pick it up & put it on his own head. When that was unsuccessful he proceeded to swing from the bar that people use to balance themselves on their new feet or legs. All the while Little Man was NOT happy with a sock on his head & an electrode that helped the scanner take a pictures of his head. The scan even picked up his grimacing face! Poor guy had to sit up in a bumbo for a long time because I needed both hands to support his head & arms. He wiggled more in that hour than he had in his entire life!

The orthopedists said that the kids were ok & they have seen worse & it happens to everyone but still. I was mortified.

We have added a dietitian to Little Man's ECI team. She is great! I was getting worried that he was going to be at 13 lbs. for the resat of his life so I asked if they could help. She had a lot of good points. One being that he was taking so long to eat (or drink a bottle) that he was burning more calories eating/drinking than he was taking in so he was not gaining & ultimately, not going to reaching any milestones anytime soon if this kept up. So we have added Fish Oil (Nordic Naturals brand), Olive Oil & continued use of the DHA to his diet. She was happy to hear that I made my own baby food & even happier that I fed him LOTS of sweet potatoes & avocados. He's not tooo fond of most meat unless its turkey, so he gets lots of that too. She mentioned that their is a diet that has helped lots of kids she works with that is geared towards their blood type. From what she described, its feeding him certain foods & avoiding certain foods in accordance to what works best with his blood type. I have heard of a Hollywood diet on the E channel that sounds like this (did I ever mention I watch entirely too much terrible television?). I figured a diet is free for the most part so I will research it & give it a shot. I'll have to do a blog post on it once I can understand it a bit better:)

I did splurge & get Little Man a new chair. His high chair is ok, its working, but I could not help but think that there has to be a better way to allow him to have the back/head support and have his arms up on the try to play with toys & food. The high chair fit him in some ways but just swallowed him up in others. Then, while I was at Target I saw a feeding chair I thought would work. I figured worst case scenario, I would return it. Well, its AWESOME! I got some pics of Little Man in it & will post them later today I hope. Mt cell phone has not been wanting to transfer pics to the card so I have to work on that.

more to come later!

Vacation Bible School!!!!!!

2009-06-21T19:26:00.002-05:00

I LOVE LOVE LOVE VBS!

Theme: Camp E.D.G.E. (experience & discover GOD everywhere)

This year, like last year, I teach the three year old class:) This year, unlike last year, will be so much more fun because it was this time last year that I had my very first perinatologist appointment. Yup. I was in a complete fog last year. Hard to get cheery & happy with the three year olds when the gloom of an uncertain dianosis of your yet to be born baby looms over your head.

So yeah, this year will be be much much better:)

Although, there will be alot of 3 year olds. As of 4 pm today, 22 three year olds.

That does not include the kiddos who are signed up the morning of VBS. Some churches have a cut off date for registration. Mine does not. We take the all:) We even take kids who are "three enough" as we like to call them. We really don't want to have any kid miss out on all the FUN that VBS is.

I LOVE my church. I really really do:)

But please, wish me luck this coming week. With 22+ three & three enough year olds.....

I'm gonna need it!!!!

The Official Post- Op Photos

2009-06-20T15:33:00.004-05:00

OK! Here are the official finished as far as I can tell post-op pics. The swelling is gone from the top of his head & we can really see now, what the surgery has accomplished. From here on out we just watch him grow for at least a year and we will probably be looking at a helmet in the next month or two.

Because he's a real good wiggler & because I can, here's 2 pics of his face:) His head is less cone like and less wide above his ears, near his temples. Is'nt he cute?!? And--- check out the hand work! He loves his hands, thay are yummy to him. He also likes to watch his hands as he moves his fingers. This alone makes his therapists (& me) very happy!

Here is his head from directly behind. His ears are more even and its clearly not as wide & although its hard to tell, not nearly as flat. He can now really move his head from side to side while on his back & it has opened up a whole new world for him! He picked up my sunglasses the other day!
View from the top! Not nearly as small as before because its not tapered at the top! Yay! Here I think you can see its not as wide or flat in the back of his head too. Its a hard angle to take a pic of I've come to think.

Side view. You can tell its a little flat, but there is definately more "fullness" behind his ears. We were lucky to get as much as we did since his shunt is near the area where they were doing alot of work.

Here he is from the other side. This is the side his shunt is on & the side we had to be super careful with, but overall, it came out well (at least I think it did!) Still a bit flat, but definately more full. They could'nt remove his "cone" completely, but its at least moved back & in a better position to be handled by a helmet. His scar is also more visable on this side, but hair is growing around it & the doctors say that in time, it will be so faint that no one will be able to tell:)

Overall, a very happy baby. He only recently began to show displeasure (remember the walmart pic?) which the therapists say is a good thing- he's communicating. So although he is still overall happy, I should be happy that he is also needy, fussy and cranky at times. If only those times did'nt come at 2:30 in the morning!

Some random pics- :official "post op pics" to follow :)

2009-06-15T09:26:00.004-05:00

Hanging out on the picnic table at Bulcher Motorcycle Park:)

Workin' it at therapy!

Good Job!!!

First attempt at sitting with a wall behind him instead of a corner. He did ok:)

Carrots are good for vision- especially when applied liberally to the face!

Little Man loves visiting his dotcors!

Capt. Chaos helps feed his brother. I love that they love each other so much!

Not to thrilled about going to Walmart...

It has been how long????

2009-06-14T09:22:00.003-05:00

I cannot believe it has been so long since I last posted. I mean. that turtle was a loooong time ago! Sorry! We have been busy doing lots of follow up appointments & I still need to make (& find time for) a neurology & vision appt.

So far, we have seen both the cranio-facial surgeon & the neuro surgeon. BOTH were very pleased with how well Little Man has been healing. The nuero surgeon was very happy to hear of no signs of a shunt malfunction/infection & that he was back to eating solids & has as of this post, regained his head control to where it was pre-surgery.

The cranio-facial surgeon apologized again for making me cry the day he offered us the option of going back into surgery for the perfectly round head. He said that although is head shape is dramatically different (in a good way) it's not the "whiz-bang" he was looking for, but given that he had a shunt to work around he was happy with the outcome. He asked if there was any improvement that I could see in his abilities & while I thought it was too early to tell & since they never say that the surgery will help their abilities, I did notice 2 things right away. 1. He his way more wiggly- Now that he can move his head from side to side while on his back, he has been putting himself on his side a few times. Because he can move his head to the side, it allows him to use it for leverage. (I hope I am explaining this right) Because he can move his head from side to side, he can now move his shoulders/arms in the opposite direction- thus letting him wiggle a bit more & a bit more effectively. I can try to get a pic of it because I know I am explaining this weird. I attribute this to his new head shape. The second thing is he has been ticklish. He even giggled a few times! Of course I have no idea if this was just "his time" to giggle or if the sutures being opened has helped expand his brain a bit helping him to communicate a bit better, but I am thrilled that he can giggle now!

His head shape is no longer a 45 degree angle at the top of his head & he still is a bit cone shaped, but the even greater news is that now that his sutures are open (they even gave him a few "new" ones if I'm looking at the ct scans right) we can try a helmet! I am totally psyched about this. We go back to Cook's in early July to really get a better idea as to when we can get fitted. The swelling that was on top of his head is almost gone and so I HAVE to get complete "after pics up! I will try to do that today.

We are blessed that there have been no complications thus far. In church last week, we heard of 2 people who had surgery with complications. One has developed a staph infection & the other person has a malfunctioning shunt (he's an adult). I can't believe that we have avoided (thus far) any complications from this surgery. We are truly blessed.

I'll post pics in the next post, right now, I have to get 2 kids ready for church!

Teetler the Turtle

2009-05-29T10:42:00.004-05:00

Capt. Chaos has a way of finding "critters" the day after the snake discovery (he called it a scary lizard) he found a "teetler" in the driveway. He wanted to show it to me since his word & charades did help to translate what exactly it was he wanted me to see:)

This is what we found...

Meet "Teetler"

He was rather shy....

But didn't seem to mind his close up...

I didn't think it was safe for him to hang out in the driveway- we have corgis and jack russell terriers roaming around. He would be an easy target for a toy- or lunch. He also did not appear to be going in the direction of the woods- or the pond. He was determined to stay in the driveway. So, we put him in a bucket and proceeded to walk him out into the horse pasture, so we can set him free in the area of the creek, with plenty of hiding areas from the dogs.

I didn't occur to me that walking out into the horse pasture with a bucket would draw the attention of the 4 horses residing in the pasture. They followed us to the creek, expecting that what ever was in the bucket was surely for them.

My horse Sarah, was curious but very, very disappointed that the turtle was not something for her to eat. She is very food motivated in her training.

We made it to the creek, horses following closely behind, and tipped the bucket where he could skee-daddle into the woods or to the creek- which ever he preferred:)

Capt. Chaos kept a close watch on him. He really liked his new friend!

Bye Teetler! We hope we helped you out. Sorry you had toddler fingers and horse noses to deal with. Have fun in the woods!

ACK!

2009-05-27T18:39:00.002-05:00

Look at what Capt. Chaos found in the hen house!

I chased that snake clear out of there with a hoe. I don't kill the snakes unless I am positive they are poisonous. Snakes eat mice, which means less mice getting into the house!

2009-05-27T07:46:00.003-05:00

Sorry, the storm north TX had last night prevented me from doing my post, so- 2 posts today:)

We are now at 2 weeks and a few days post op. We have our first therapy appt. I think tomorrow(!) I need to find my day planner.

Anywho- Here are some after bath pics. He's so happy in them because he was so UN happy to be in the tub! He is always extra cuddly after a bath because of his distaste for being wet.

We are back to eating "solids". I have no idea why dr.'s call it that- when its really puree mushyness. Either way, we are back to eating them. Here I tried Honeydew melon on Little Man. I had to add cereal to it to make it thick enough for him to do something with it. He seemed to like it! It also took a few tries, but he did smile for the camera too:)

Hey! Hey Little Man! Over here! Look at mommy!

That's it! Aww look at you! Do you like honeydews? Can you smile for Mommy?

(he's probably thinking "why is she talking so much & waving that spoon? And what is with this phone that she is always pointing at me?)

OMG! That smile will melt me

EVERY TIME!!

Some Late Post-Op Pics.....

2009-05-25T11:54:00.003-05:00

Sorry this took so long! Here are some pics of Little Man 1 week post op. You can see that his facial swelling is nearly gone & his beautiful blue eyes are shining through:) So much has happened in the 2 weeks since his surgery that I've had a hard time catching up. But I do some neat posts planned so I will try to do a post a day this week:)

Here are the pics! Oh- the first pic was of him in his carseat on the trip home on Thurs. 5/14

All Smiles on the way home!!!!!

Still smiling...especially since he can open both eyes now! The next few pics are 1 week post-op! You can see his head is more round here:)

Right side- not a whole lot of work done here since this is where his shunt is located. Not sure you can see it, but its a few inches behind the top of his ear. But you can tell that is is alot less flat- its a bit fuller behind his head.

Left side. more work was done here, but the shadow hides some of it:( He is still a bit cone headed- but the swelling on the top of his head; where the most work was done is still very puffy in these pics. It will be several weeks until we see the final result.

Since the surgery, he has become more wiggly, which is very cute to watch! Here he is trying his best to roll over onto his side. He hasn;t done it on his own yet, but he works hard at it! He can tell his head is different too, now that it is fuller & rounder in back he can finally move his head from side to side on his back- some thing that was very hard for him to do before surgery.

I have more pics to come!

Surgery Recap Part II

2009-05-18T08:33:00.006-05:00

***

This is a long post with a lot of "thinking out loud" at the end. but it was very cathartic to put words to my feelings and that in the end will always be cheaper than the most comfortable therapist's couch :)

****

We spent Monday night in the PICU and first thing Tues. AM he had a CT scan so the surgeons could really see how they did. We were transferred to our own private room on Tues. night. It was wonderful! I still had a padded bench to sleep on, but we were in our own room-with walls as opposed to curtains! I actually slept for a few hours:)

Here we are in our new room. The bruising around his eyes is clearly visible. It looks like the Avon Lady went a little crazy with the purple eye shadow;) He is awake in these pics, but the swelling made it super hard for him to open them.

I couldn't resist taking this photo. It reminds me of Elisabeth's toe:)

Wed. Morning the bandage came off! I was surprised to see that they kept his hair. The nurse said that they have found an increase in infections when they shave off their hair, so they just part it with the zig-zag incision and leave it :) We were told by both surgeons that he was healing well & we could go home on Thurs.! Yipee!

Wed. night, we got a shock that we were not expecting. Both surgeons reviewed the CT scan and gave us the option of one more surgery during our stay. We talked about our goals with wanting the surgery; which were a more rounded "normal" head shape as opposed to a flat cone shape, a better shape/space for his brain and open sutures to allow for better growth. Before surgery, his coronal & saggital sutures were closed & the shape was only going to get worse as he grew. It was also going to put more pressure on his brain where those sutures are & really- does he need any more pressure on his brain? Doesn't the hydro put enough pressure on the poor thing?

Both surgeons agreed that the goals were accomplished, however, they both felt that they could do better at getting his head to look "exactly round" after viewing the Tues. am CT scan. They gave us the option of going back into surgery Thurs. afternoon. I just cried. Literally. I so appreciated that the offer was presented to us really, I like having options. I also remember being told at our very first consultation that this whole process could possibly involve more than one surgery so I was prepared to hear that- just. not. this. soon. I had only realized at that moment just how hard it was emotionally to get through this one surgery- now I had an option of going back for another? Dr. H, who has been previously blogged as "the good cop" because he was always optimistic & upbeat, even with the fact that Little Man's head shape was not something he had seen beforehand every agreed it was a "severe deformity", asked me how I was feeling since Hubby had been doing all the talking/asking up to that point. I said the first thing that came to mind. Scared. I was scared to put my son through another surgery. On. His. Head.

Even if it meant that in the end he would have a perfect head. I constantly live with the thought that a shunt infection can happen at anytime- for almost any reason. I feel we have been truly lucky to not have to deal with it (yet) & I really felt like I was pushing my luck with having him go through with this surgery. There were times I felt selfish for wanting him to have the surgery in the first place. In the end I figured that if he looked a bit more like other kids, it would be one less hurdle for him to overcome once he starts school. Yes, I understand that he may still get picked on for his developmental delays & I can't protect him from all childhood insults, but if I could just eliminate one hurdle that might also have the added benefit of helping meet milestones today (remember how he can almost roll over- if his head were not so flat & wide behind & how his "cone was acting as a counter weight when he tried to lift his head?) I would feel as if it were all worth it.

After looking thoroughly at all the scans, I saw a big difference in the shape of his head. Its not round- but its not pointed & cone like anymore. Maybe oblong? Even with the doctors conservative approach- one we appreciated- we were happy with what we saw & we were happy with how he was healing. He is still very swollen (its a week post op today!) especially where his cone was, so we still have to see about the final result. but all together, we are happy with our choice & happy with the result. If needed, we can revisit this subject in a year, but we have a feeling that it won't be necessary :)

Surgery Recap Part I

2009-05-17T12:10:00.004-05:00

The morning of the 11th the whole family woke up at 3 am. By 3:45 am all four of us were on the road to Ft. Worth. We needed to check in somewhere between 5:30 & 6 am. When we got there, there were 2 other families waiting as well. a girl who looked to be around 10 and a 10 day old baby. We went back into a room where they double checked all our paper & blood work. Pastor Don, from our church met us there and helped to relieve alot of tension. We said a prayer over Little Man which really helped me feel better about the whole thing.

After that, it was a succession of one nurse & doctor after another. We meet both nurses who would be in thew surgery room with him & who would be calling us with hourly updates. We met both anesthesiologists who would be with him and finally, both surgeons. We said our last "see you laters" (I could not bring myself to say good bye) at 7:30 when they wheeled him away. As he was going down the hall, I could see he had his hand up, looking at it & was cooing softly. As hard as it was to see that, I finally felt the peace I had been praying for. They said it would take about 1 hour to prep him for surgery & they expected to start at 8:30. They called right on the dot saying they began!

I will say that Capt. Chaos handled this all very well. He watched movies in the waiting room quietly & then played with their train table in their prep area. We took turns entertaining him which helped ease alot tension. When we went into thew surgery waiting room, I took him for a "tour" of the hospital as we made our way to the cafeteria. We found a huge window where they we doing construction outside- complete with bulldozers, backhoes, dump trucks- even a helicopter! which kept him happily entertained until Grandpa came to pick him up:)

Then, the waiting really began. We got a phone call every hour from the OR. They never said much, just that Little Man was stable & "doing his part". The surgery finished at 1pm and he spent 2 hours in the recovery room receiving the rest of his blood transfusion. We were able to first see him at 3pm when they moved him to the PICU for overnight observation.

Here are some pics from that first night.

First look at the "turban" once he was settled into his PICU "room". We were in a corner & most rooms had curtains for walls. Only the really sick kiddos had "real rooms" made of glass doors.

The two machines that kept track of everything he did!

Tuesday morning. This was the first of the bruising. He was able to open both eyes for several hours before the swelling & bruising set in. He was smiling for a few hours too:)

Home Sweet Home

2009-05-14T16:47:00.002-05:00

After 4 days at Cook Children's (an awesome place, btw)

We are HOME

A full report, complete with pics to follow as soon as we all get some sleep:)

~~~~~~~~~~~~~~~~~~~

Thank you all for your prayers & kindness. It meant the world to us:)

Does Anyone Remember Erma Bombeck?

2009-05-10T14:15:00.000-05:00

The Special Motherby Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity.""Forrest, Marjorie; daughter. Patron saint, Cecelia.""Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."The angel is curious. "Why this one God? She's so happy.""Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel.""But has she patience?" asks the angel."I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it.""I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.God smiles, "A mirror will suffice."
Happy Mother's Day

I've been tagged!

2009-05-07T07:19:00.002-05:00

I have been tagged by my blogging friend, Sherri, Miles' mom. Thanks Sherri! I I always thought these tags were fun!

24 things about myself

1. What is your current obsession? Unfortunately, this upcoming surgery. A close second would be gardening. I'm actually growing more than weeds & rocks this year!

2. If you could do any job in the world & be 100% successful, what would it be? There's alot I would do but it would all center on having my own horse farm! Raising ponies, teaching therapeutic riding & hippotherapy.

3. What are you wearing today? Jeans that are relatively clean & a T-shirt that says "Jesus Loves Me & My Tattoos".

4. Why is today special? No doctor's appointments! Just a quiet day at home, playing with the kids & putting the house back together before Hubby comes home:)

5. What would you like to learn to do? Sustainable farming, but I'm not sure I would be able eat an animal that I raised. I'm ok with eating our chicken's eggs, but the thought of Francine for dinner makes me sad. Ditto with a beef steer, but having goats would be fun! I could raise them for milk & their fiber- mohair is super soft!

6. What’s for dinner tonight? Chili & corn bread

7. What’s the last thing you bought? A #4 off the breakfast menu at McDonalds.

8. What are you listening to right now? A combination of Fox News, Capt. Chaos playing with blocks & Little Man making noises in the pack n play.

9. What’s your most challenging goal? Saving up for a farm of our own.

10. What do you think about the person who tagged you? Sherri is Awesome! She can cook great meals that are easy to make & is super creative. Even though we never met offline, I feel as if we have alot in common such as toddlers that say the darnest things, Little boys who share similar struggles & wanting buy a house.

11. If you could have your house totally paid for, fully furnished anywhere, where would it be? Somewhere in our school district! Boring I know, but I really want Capt. Chaos to be with the same set of friends from K-12. I never had that growing up. Its also divine intervention that we are in a really good district that has AWESOME ECI services as well as Special Education services.

12. What is your favorite vacation spot? I've never been on a vacation:(

13. What would you like to have in your hands right now? Hot coffee, a good book & peace of mind:)

14. What would you like to get rid of? Emotional Baggage- not just mine, every one's!

15. If you could go anywhere in the world for the next hour, where would you go? I would visit my mom on Long Island. I miss her.

16. What super power would you like to possess? Physical healing, for obvious reasons. I'll second that!

17. What’s your favorite piece of clothing? It changes according to the season. Right now, anything that is comfortable & suitable for gardening & riding.

18. What is your dream job? A combination of #2 & #5. I love farm life and being able to work at home on my own farm with my family & animals around me.

19. If you had $150—what would you spend it on? Peel & Stick carpet tiles in the boy's room. Between 3 boys & the dog, it doesn't even resemble a carpet anymore:(

20. What do you find annoying? Dishonesty & pretentiousness.
21. Describe your personal style. Like Sherri, I don't have enough money to express it! But it is very eclectic. I can be feminine & modest one day, "western chic" the next & BoHo casual the next. It all depends on whats in my closet:)

22. What is one of your secret skills? I am an amateur Farrier.

23. What are you most proud of? My Faith, Marriage & Children. Joel & I have only been married for 3 years & we have been through more than people married for 3 times as long. The short list? Baby soon after marriage, 2 lost jobs, 1 lost house, 1 move half way across the country, 1 difficult pregnancy. With out my faith in God, I would have been in the looney bin by now! Our children amaze me. Capt. Chaos in how he keeps me laughing & how he embraces being a brother & Little Man for doing so well despite his hydro.

24. What is your typical morning routine? It usually consists of getting up anywhere between 6:30 & 7:30 with the boys. Feed the boys something that resembles breakfast, let out & feed the dog & chickens, then feed the horses. Back inside to make a "real breakfast" for everyone. Then its prioritizing the day's tasks while Little Man takes a bottle & Capt. Chaos watches KERA- he loves Super Why & Word World! Once the day's chores are listed, we set about doing them.

I will tag the readers who follow my blog. Sarah, Josphine, Stephanie, Cassandra, Holly, Mary, Sephani & Angie,You don't have to do it if you don't want to because I know ya'll are busy, but it would be fun to now a little more about you:)

2009-05-05T15:56:00.004-05:00

Because its a good thing to do! :)

We are beginning to tie up the loose ends before surgery. We had our last appt. with his therapist. Have I mentioned I lOVE his therapists? They do such good things with him & really help guide us as we go down this special needs path. Plus they listen to me rant & rave & that means the world to me!

As the pic tells, Hubby & I donated blood for Little Man's surgery. We each gave a pint. Hubby went first, filled out the questionnaire and got hooked up to donate. He was done in about an hour. While he was donating, I was in the waiting room with Capt. Chaos & Little Man. Well, I don't think I have been more embarrassed in my life! Capt. Chaos not only lived up to his nickname (that I can't stand, btw) he embraced it & all things that are holy to a 2 yr. old and lovingly (& LOUDLY) shared it with the entire waiting room. Oh, and the waiting room walls were half height walls so everyone donating blood at that time shared in it too. Sheesh- I finally took him outside and made him run up & down the side walk for 20 minutes. When he came back in he fell asleep in my lap & was a dream (pun intended) for Hubby who got to hold a sleeping toddler while I donated.

I was wondering just how long it would take to donate & I was told it was different for everyone. Hubby bled out slow- he took the full hour to donate a unit. Me? I bled out in 8 minutes! I joked to him that if we were ever in an accident I get first dibs on the ambulance since I bleed quick! Anyways, after we donated we all had cookies and juice & got a t-shirt. It was my first time donating ever & I'm seriously considering doing it not only again, but on a regular basis. I was very tired & got dizzy the next day, but its such a good cause.

We have our last Cranio-facial appt. tomorrow. a last look see at the scans, his head, questions & answers. Not sure what else. On Friday, we go back to patient registration to get the paperwork done for his surgery. I'm still sweatin' the insurance part. We were told it was going to be coded as reconstructive- not cosmetic so the insurance won't second guess it. We have good insurance that has done good by us thus far, so I am hopeful all will be covered:)

The grandparents have offered to take Capt. Chaos starting Mon. AM (day of surgery) so he can go to their church's pre-school program. I'm worried about how he will take it. He will be away from his parent's & his home and doing an all day pre-school. He hasn't done any "all day" anything before. But he loves his grandparents & their dog so he will have a good time. I just worry about him.

As for hubby & I it is still up in the air. He will probably make trips to the hospital, while I stay at the hospital. I'll find out some more tomorrow. I've thought enough for today. I will now let my mind slip into oblivion by watching some truly tasteless TV :)

One week from today...

2009-05-03T15:40:00.004-05:00

Little Man will be in surgery.

The sleepless nights are already starting. I feel very much that this is the right thing to do for him, but I'm still terrified. I took a bunch of "before" shots of him last night after his bath & his 10th(!) haircut. He is soo cute! He was so smiley & happy. He's been discovering his voice lately too. Lots of ah-oo's & a TON of humming. He hums alot! He also does a sort of groaning noise, hard to describe- but he starts it up at night, just when we are getting ready to sleep!

Here are the before pics. After the surgery, I'll post after pics. It will be neat compare the two.

My sweet boy! I could spend all day kissing him! I love his expression here! Its like a Mona Lisa smile (I think)

Right side. This is the side that his shunt is on. They don't plan on doing a whole lot surgically here which is good because no one wants to mess with a shunt that has been doing it job perfectly!

Left side- again, not a whole lot surgically going on here.

Here is where alot of the work will be done. His coronal sutures (they run from ear to ear)are fused & his saggital (on top of his head, from the coronal to the crown of his head) is working on fusing.
Here is where the largest change will be. because of the two previously mentioned sutures are closed/closing, its causing his lamdoid sutures to expand, making his head become wider & taller (more cone shaped) and something that has been happening more recently, his ears are no longer level with each other- they are being pushed downward.

What I hope that Little Man will gain from this surgery is a better sense of where he is in "space". Right now, his head control is really more of a balancing act rather than an act of strength. I've seen him sit up in his bumbo and literally move his shoulders in a way that helps to balance his head. At this point, I feel as if he is gaining either better control over his trunk muscles than over his neck muscles or that his trunk is getting stronger than his neck muscles. Of course what I just wrote could be one & the same. :P

I can only assume that once his head is not in a cone shape he will have an easier time rolling over (as in a flat rock won't roll) and lifting his head from a tummy position, The cone part of his head literally acts (in my observations) acts as a counterweight- only instead of making him stronger, its hindering him. I know he has it in him to do this- I just want to help him along as much as I can.

Having Fun with the Boys!!

2009-05-02T20:21:00.005-05:00

Figuring out how to hold little brother..
Almost!

This can be fun!

There we are! A first photo op with Big Brother holding Little Brother!

Its hard to get us all in the pic with a cell phone, but we did it!

Does anyone remember Erma Bombeck?

2009-05-02T15:58:00.004-05:00

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

Happy Mother's Day

Because He Lives

2009-04-26T16:48:00.003-05:00

This is the name of one of the hymns we sang in church today. In the second verse it says something along the lines of feeling pride & love when you hold a newborn baby, and because He Lives this newborn baby can face uncertain days.

I don't know about anyone else out there, but I take such comfort in that Jesus answers my prayers in such a way that I can understand. I have been in a state of constant prayer lately & this hymn has brought my heart some much needed peace. I do not know the outcome of Little Man's surgery & I have been praying especially hard for a not yet born baby who may or may not have something wrong with him. This baby, in particular has been in my prayers & heavy in my heart for some time now. Singing this hymn in church today, gave me a bit of peace about him as well. I mean, I was literally tearing up over this hymn.

On Wed. we go to donate blood for the surgery. The dr.'s office gave us 2 forms to give to other family members if they are interested in donating. I'm not quite sure why, but knowing that one of his parent's blood will be used during surgery is comforting as well. After that, I need to make plans for the actual day of surgery. The grandparents have volunteered to take Capt. Chaos the night before, which I may take them up on being that the drive to Ft. Worth is just over an hour and we need to be there by 5:30am. I know for a fact that Little Man will be in the hospital for a few days, and I don't know how they work the whole "parents over night thing". I also know that I cannot come home to an empty house- I'm going to need Capt. Chaos top be with me at night while Little Man is in the hospital- even though staying with the grandparents will be a total blast for him, it would really do me in to come back to a house that has no children in it! Sigh.

I am really dreading this, but I have read so many positive things about this surgery- I actually have yet to come across anyone who has regretted it & there are 2 hydro kids out there (on the internet at least) who have gone through this very same operation & they look awesome & they are in school, doing all sorts of "normal kid" stuff. Sigh. It does not make this any easier.

Here are some random pics!

The chickies are getting bigger! Francine has recognized that too & she does not peck at them to much now.

This adorable gut is the neighbor's dog! His name is Cowboy & he is a Corgi. He loves to come over with his dad, Bullet (can't find his pic) & play with the kids & eat milkbones:) His sister belongs to my In-Laws & when she is here they all play in the paddocks together. Its super cute.

This is one of my old saddles. Its for sale on Craig's List:)

We Can Do It!

2009-04-25T19:06:00.003-05:00

Even though my digi cam is still not working right- although maybe if I cracked the manual it would have a better shot at working- these pics should get me moving on fixing it! My cell cam doesn't have a flash! Argh!

But I love these pics anyways because it shows that we can do it! We can hold toys and pass them from hand to hand. He only does this on his back, but the fact that he does this has got to be milestone in itself, right?

He even has been bringing toys to his mouth, then back out & looking at them & smiling as if to say, "Yum! Plastic!" Or whatever babies say to themselves before they can tell you what they really think:)

I'm so stinkin' proud of him. He has been holding toys, but its been hit or miss- now, he can do it everytime I put a toy in his hands. He's not at the point of picking up toys himself, he's only done that once, but we'll get there!