Sunday, October 19, 2008

Overdue Update

We have to apologize for not updating more often but with things moving so smoothly we are just having too much fun to sit down and write about our daily activities. More importantly Ellie has been remarkably stable in the past few weeks and when things are good it makes it seem like there isn't much point in telling everyone that things are good. One email from another parent about their troubles with an SBS toddler reminded us very quickly about how things can go in the toilet just like that so I will take this opportunity to deliver a rave report about the amazing Gut Girl.

With TPN pared down to just 3 nights a week she has just now started to gain weight and grow again. We would have been happy if she held her weight after losing the night of TPN a month ago but her weight is actually up to 14.4 kg and almost 37 inches this week. This places her squarely in the 75th percentile for both height and weight for 30 month old girls. This points to the likelihood that some of that food that goes down the hatch is finally being absorbed- a very good sign since increased absorption is the goal for her. She keeps shoveling meat and noodles and vegetables and when it doesn't come out whole or in a recognizable form, we know that we are on the right track.

We have even dialed down her elecare intake each day to 1000 ml to encourage Ellie to eat solid food instead of drinking liters of formula. To think that just a little while ago we were doing everything we could to get each last ml into her and now we are limiting her formula! Solid food is another goal so this weight gain is a great sign for us.

Ellie had her 30 month evaluation for Early Intervention this past week. It was quite casual for all of us and Ellie did the evaluation tests like they were new fun games. In the end she maxed out all of the tests that were applicable to her and tests at 35 months for everything except things like toilet training (1500 ml of TPN every night sort of shoots that one down), and feeding (we know that she is sort of slow on the feeding skills). Not to brag but I'd like to send this report to the doctor who told us that she would be delayed. Delayed my ass.

The upside of this is Ellie likely won't need a lot of Special Ed services (like PT, OT, or speech) when she goes to preschool. The downside of this is that since she won't need services, the town won't pay for her preschool. I'll pay that tab happily if it means that she has beaten the odds for hospital kids. We are going to make sure that her medical disability is well documented because we can't predict what is coming next week let alone next year and want to make sure that accommodations will be made if, for some reason, she misses school or if the reconnection surgery changes her situation like it possibly could.

We will start the process of transition to the school department in the coming months and hope that things go as well as we have been told to expect from our local schools. When I spoke to the early childhood coordinator a few weeks ago about Ellie, it was funny when she told me 'we've had kids with nurses, kids with ostomies, and kids with feeding tubes.'

'Ever had one with all three and a central line?'

'Um, I can't say that we have.'

'Yeah she's got the trifecta. But you wouldn't know it unless you opened the hood.'

She was stunned. I guess most parents don't talk about their kids like racehorses or hot rods.

So onward and upward.

Still no word on scheduling the coveted manometry study. that will hopefully give us the green light to reconnect her. There is only one GI doctor at Children's who does the study and he is a very busy guy.

Also no word from the geneticist about Ellie's tests. Apparently there are some studies that link Ellie's condition to a genetic trait and before we sign up for another little one, we want to make sure that we aren't playing against a stacked deck.

I am off to Washington for a long overdue visit to the Oceana mother ship. Let's hope that this trip is easier than the last time I flew away for work.


Peggy said...

Your thoughts on pre-school, genetics and busy GI docs ring so true, as we are experiencing these same concerns too.

I'm sad that we couldn't get together last week. It is for the best, because the next day the CHB pediatrician said she has the beginnings of pneumonia. So, I'm glad we didn't pass anything on to Ellie.

Thanks for the update. You two have a beautiful family together and I'm so pleased to know you both. Hopefully, we'll be able to get together soon.

Anonymous said...

It's crazy that your already talking about preschool! Time goes so fast. Love hearing about the status quo and the positive stuff as this post was jam packed with positive. You guys really are amazing! :)


Anonymous said...

What a lovely post!! Love the "delayed my ass". You show them Ellie!!!! Must be the great support system and Omegaven(in my humble opinion). Hope you get the test done soon so talks may begin of a possible re-connect.