Lots of updates!

Okay, so on 5/8 I went to the transition meeting for Nathans move from early intervention to the Intermediate Unit. First of all, I can not believe he is going to be 3 years old in a couple of months. Age 2-3 went so quickly!! Secondly, sitting in the meeting I could not believe that I am talking about an IEP (individualized education plan) for my son. Not that it is the worst thing in the world-it just seems strange to be talking about specialized education for him.

on Friday, 5/9, I had an eye appointment for Nathan, just a regular recheck due to his prematurity. He is fine. The eye doctor, Dr. Koller said that he will most likely be nearsighted (big surprise) and he wants him to see him again in two years.

On Wednesday 5/14, UCP (United Cerebral Palsy) called to tell us they have room for Nathan beginning July 1st, two days per week. I had been hoping they would have room for him, but when I got the call, I had all kinds of mixed feelings. I am sad that he has to leave Hey Diddle Diddle before Libby leaves for Kindergarten. Libby will be so sad. I worked really hard to get them the same place and to actually like each other (they finally do!!). I guess it is just also another reminder of his "special needs" that he cannot stay at a regular daycare with his sister. It's all relative though because when we go to CHOP and see the children with severe CP, sitting in wheelchairs, you realize that their parents would probably be thrilled to have their children walking and talking like Nathan.


Last wednesday 5/14 we had an appointment with the orthopedist. After waiting for 1 hour and 50 minutes with our two children, we met with Dr. Ecker and his bored Resident. Although he was quite the mumbler, he was nice enough. He said that Nathan's hips seem fine, his heel cords are not tight (the back of your foot that allows it to move up and down)-the side to side motion, subtaylor range of motion is tight. He said that the length of his legs appear to be the same. He said that it is possible that there are some congenital fusions in his feet that are limiting his range of motion. There is nothing that they can do about that. When asked if he could compensate for it, Dr. Ecker said that he will just have trouble running on bumpy services. My response was, "So he won't be a track star?" to which he said "Exactly!" We told him we were not expecting him to be super coordinated or super athletic with us as parents so this was not a blow to our ego.

Well-that is all I can think of right now. We ran into Nathan's previous teacher, Miss Sheila on Saturday night at the mall. He was thrilled to see her because he has been asking about her. Strangers whispering about his "little cast" is getting old but they don't mean any harm. It just seems that we cause a stir everywhere we go, but that I guess I will have to get used to since I'm sure Nathan is going to be famous some day!! Some man did ask what happened and when I told him he fell at the bottom of the slide, he asked "And where was mom?" Oh well.

Oh and Nathan has a consultation for Occupational Therapy next week.

the cast!

Here is the cast! He wanted black, but we talked him out of that color. In retrospect that may have been better. He got it on Friday and it is pretty gross already! He has to keep it on for four weeks which is not too bad. By Sunday and Monday he finally figured out that he can still use the hand/arm and he is doing pretty well with it.

ER Visit #.......oh who knows!

Nathan fell at school and fractured his lower ulna and radius bones in his arm. This is the initial splint and hopefully he will be getting a cast tomorrow. We did not have any appointments tomorrow anyway, so I was wondering what we were going to do all day! (please note sarcasm)

Mark took him to CHOP and they said this is very common for typically developing toddlers when they fall and put all their weight on their wrist to catch themselves. The one doctor even told him that her niece had the same injury two weeks ago.

Once he gets his cast on it will be about 6 weeks. He wants it off already so it may be a long six weeks! It is his right hand, so he can't hold his sippy cup or handle his fork for eating.

waiting impatiently....

I am at work, waiting for the GI doctor to call with the results of Nathan's sweat test yesterday. I can't concentrate. I was very confident that this test was merely a formality to rule out Cystic Fibrosis, but waiting for official word has my stomach in knots. He had the test yesterday at CHOP and was very good. He did fuss about his arms being wrapped in blankets and thus not being able to move his elbows for 30 minutes.

The kids have both been sick. Nathan is back on the nebulizer for what Dr. Lockman thought could be the start of pneumonia and an ear infection.

Nathan had his review for early intervention services and he no longer qualifies for educational services so we sadly said goodbye to his teacher, Miss Sheila. Miss Sheila was going to be leaving us shortly anyway to have what they are telling her will be a big baby boy but it was sad to officially have her last visit. Nathan kept hugging her so he definitely knew something was going on. So we are down to just physical therapy in the home you are thinking???? Wrong! Now Nathan is being referred for occupational therapy for what Miss Ann Marie (physical therapist) believes to be fine motor delays.

The chest x-ray came back fine! After the results of the sweat test we will be moving on the the endoscopy which requires sedation. Not looking forward to that.

Last night we went to a workshop at UCP (the school Nathan will be going to in the fall). The purpose was to help parents address the needs of their typically developing children in families with children with disabilities. It was free, with free childcare (and they fed the kids too!!) It was great to be in a room of parents who are dealing with the same issues. My friends and family all have typically developing children and although everyone is very understanding it is not the same as being around people who are going through the same things. In fact we have it easier than alot of parents with children suffering from autism and severe CP.

Okay-well. We just got the call, negative for cystic fibrosis! Honestly, you would think I would be relieved and part of me does feel relief. Part of me feels disappointment though. At least if it was CF we could provide some kind of treatment. Or as Mark said, we could focus on one or two doctors rather than continuing to run from dr. to dr. At least we could "sign up" for the CF mailings, support group etc. The life expectancy for someone with CF is 30 ish, up from 10 years for individuals with Progeria. Hopefully we will keep moving up from here!!