Wednesday, August 19, 2009

NICU follow-up

Today was Adam's NICU follow up visit. It was a rough morning. The appointment was at 8:15 am, which was rough enough- 2 kids up, dressed, eaten, and in car by 7:45- I also HATE to wake up children. We were done by 11:30.

He saw a doctor (director of NICU), speech, developmental specialist, and a physical therapist. It was a battery of questions and (with the exception of the doctor) they played with him. Really they were tests disguised as play.

I am exhausted.

Emotionally it sucks. It sucks because I watch them ask him to do things that I know he can't do and that other 2 year olds can do. Also some things he can do but didn't feel like it. I also know how hard he is trying and how far he has come. I am so proud of him and know that someday he will be able to do all kinds of things, I cry because he can't and I cry because of how far he has come.

So. He can't talk, but he can sign and uses PECS (I'll explain that another day) He can walk, but he can't jump. He can stack blocks, but only 4. He can identify nouns in books, but not actions. He knows "in" but not under or behind. He knows some colors, but no numbers. He can scribble but only horizontally.

It was rough to watch my kid perform below his age. The therapists discussed their results with me and offered suggestions of things he still needs to do. I was defensive. I explained how far he has come in 2 years and how hard we have worked with him and taught him and fought with doctors and hunted specialists and traveled to other states and had 5 surgeries and 10 hospital stays- not including the 9 weeks in the hospital with the trach.

I got teary in the car ride home because I was so proud of all he could do.

For one of the tests the woman gave Adam a string of beads and a small narrow container. She asked him to put the beaded necklace into the container. The container was pointed on the bottom and narrow. He tried to put it in, then he tried to put the container down to use two hands, the container tipped over (it was pointed on bottom), he picked it up and tried it again. Then he put the container on its side and tried to shove the beads in, but dropped the necklace. He picked it up and tried again. Then he dropped the container. He picked it up and tried again. It went on for several minutes. The tester commented that most kids tested have given up by now. Adam was still trying. Finally with no help he put the container on the side and held it with one hand and used part of one hand and the other hand and got the necklace in. It was frustrating to watch, but amazing to see his problem solving skills working and even more amazing to me was that it was a concrete demonstration of his tenacity. That personality trait is what keeps him going and surviving.

"Don't you sit down on that step cause you finds its kinder hard" - from Mother to Son by Langston Hughes

Thursday, August 13, 2009

choosing a daycare

Back in the Spring we began searching for schools/daycare programs for Adam for the fall.

We thought. Do we want him close to home or close to work? We chose close to home. Because...
1. We work 35 miles away. It's a rough commute that we don't even like. It requires a major highway with accidents.
2. We can connect with people that live here, so we can do play dates, parties and know people who might be in elementary school with Adam.
3. We have a cousin, brother and aunt who live in our town and can pick him up if needed.
4. he can continue to have his early intervention therapists. They will go to the school 3 x a week instead of the home and we don't have to figure out what to do in another county.
5. When he turns 3 (in 8 months) he is eligible for public school disabled program and it will be easier if we are already in our town with daycare.

Now let's find a school.

Special schools where we live are only for 3 and up. There is 1 school for disabled kids in the county for under 3. We visited it. It had no outside play area. The babies and toddlers were in wheelchairs or ha limited mobility. it was institutional looking. no colors. kids seemed clean but understimulated. not for Adam.

First we tried Montessori. Matthew went to Montessori school until he was 5 and it was a great fit and a great program. I feel he benefited tremendously. When I revisited a montessori school, I tried to see it through Adam's eyes. It did not seem to fit.

Second we then asked his therapist and case manager for some suggestions. She gave us a list (which I could have gotten off the internet). I called each one and was disgusted by the way I was treated. Here's how it went

"Hello. Blahblah school how can I help you?"
"Hello. I'm interested in a daycare program the fall. My son will be a bit over 2. Do you have openings?"
"Sure. When would you like to come in to visit?"
"My son has some disabilities, is that a problem?"

Ready. Get ready. Here's the reply.

"well, what's wrong with him?"

and I got
"Um, well we actually only have normal kids here"

and I got
"I don't think this school would be good for him"
Those were the comments I got from way too many schools/daycares.

Third I contacted the 2 colleges/universities that we are lucky to live near. They both were awesome. Actually excited to have a "different" kid. They have lots of students who work at their centers and all would be great. EXCEPT- when I visited both schools, their playgrounds were completely on sand. The entire playground. ( note- sand is not okay when you have a trach)

Fourth I asked all of the parents at the baseball, soccer and basketball games we attended for our 9 year old. Where did their kids go? I found a winner! We called and visited. They seemed open to a "different" child and their playground was not on sand.

Let's hope it works out. We will find out in 2 1/2 weeks.

Tuesday, August 11, 2009

Day care

If Adam was born on time (and none of what happened, happened) than Adam would have gone to daycare when he was about 6 months old.

Instead, all that happened, happened and we made lifestyle changes to make sure he would not.

His NICU doctor explained to us that Adam lacks many immunities. He missed the entire last trimester. To try to make up for that and help him, I pumped breast milk for 6 months. I would set my alarm and wake up around the clock to pump. Then I would freeze it and/or bring him fresh milk. The NICU had a pumping station and would store my milk for him to use when I wasn't there. My breast milk would go into a feeding tube and then later a bottle for him. I feel good that he survived solely on nutrients from me for his first 6 months.

The other thing we did was we listened to the doctors. Adam went NO WHERE. 
1. He never went to public places- no mall, restaurants, chuckecheese
2. All those who see him had to have flu shots, wash their hands and be non smokers
3. We all (including my 9yr old) changed clothes and showered when we came home from school/work
4. We temporarily found a home for our beagle- (she sheds and the whole trach thing made it necessary to keep home hair free)
5. We cleaned as often as possible

The biggest thing was no daycare. I took a 6 month unpaid leave from work and then Philip took an almost 2 year unpaid leave from work. We borrowed and mortgaged money, eliminated expenses and Philip took a job paying a lot less but with better hours working 1-9 pm. We hired a babysitter from 1-4 and my mother, cousin and brother helped watch Adam in our house.

He got sick a few times and was hospitalized for minor illnesses, but we felt it made a difference. They told us he had an 80% chance of not seeing 2 years old. We worked hard to get him this far, but we are now going to put him in day care.

1. He needs to socialize with children
2. He doesn't talk- only signs and uses PECS so hoping that this might improve his speech.
3. He doesn't eat much- maybe seeing other children eating will help, too.
4. Phil's leave is up and he needs to return to teaching or lose tenure and pension.
5. Adam got his trach out

Adam will go 3 days a week to daycare in September at 27 months old. We still have a sitter and family to help with the other 2 days.  I will blog more on our selection of schools another day.

Saturday, August 8, 2009

cooperstown, ny

I know, it's a bit delayed. However, it's been super crazy busy (as always)

We went to Cooperstown for the induction of Ricky Henderson a few weeks ago. he is Philip's favorite ball player from his youth and we couldn't think of anything better than having Phil spend the weekend with his own father and our boys.

It was the first time we stayed in a hotel with Adam. We had to bring LOTS of stuff including medical equipment. The hotel was very friendly and posted a sign alerting others that we had oxygen in the room. 

Cooperstown  has no parking normally and so they really had no parking during the induction weekend. We had a hard time finding handicapped spots, but we managed with the stroller to bring it all with us. 

On the way to Cooperstown, we stopped by a cave - Howe Caverns. It was a nice spot to spend the morning. The kids got a break from the car ride and we had a nice picnic lunch. It had like an hour or so tour of the cave- including a boat ride. They don't allow any bags down into the cave, but they were friendly and allowed an exception once we explained Adam's needs and the problem of being 135 feet underground without some of his stuff. They allowed Phil to carry Adam's backpack with an ambu-bag and some emergency supplies. That was great to be all included as a family. We did split up when the boat ride came. Adam can't do any sort of boat- so he went back up to the surface.  All in all, they were great there!

We did it!