Monday, August 25, 2008

Today's ped appt for Micah and Emma

Lots of neat thing for both kids today! This was the first "proactive" ped appointment we've had for Emma... the past several since coming home have been more survival based. It is a MUCH WELCOME CHANGE!!!

First, let me tell about Micah though :) He has officially DOUBLED his weight and put on about 1.25" in lengh! He's now 22lbs 4 oz and 28" long. He came home in 3-6 months clothes and almost 6 months later he's in 18 and 24 months clothes! What a HEALTHY looking kid we have now, I'm so happy for his accomplishments! Also, I asked about what to do about Micah being on soy and if we could take him off of the formula. That was met with a big happy YES and we are going to go ahead and try to do regular milk with him. We'll do it for a week, see what kind of response we have as far as BM's and reflux, and we'll go from there (unless, of course, it's obvious in less time that he cannot handle it). It's possible that now that his system is "stable" he will do just fine with dairy. We shall see!! If need be we'll move to soy milk, which is what our ped has recommended as an alternate to the regular milk. We did get a new script for Micah's Zantac script for his tummy. He's good to go!

Emma is slowly but surely putting on weight. She is 21lbs 12 oz now and is 33" long! She was 17lbs and 31" when she came home almost 6 months ago. We're going to meet with a nutritionist... sometime... and get some advice on how to best adapt her diet to get in about 150% of the current calories she wants to take in. We also got a script as our first step to getting a wheelchair for Emma. If anyone has any ideas or advice on going through the process to get her some wheels or even what a good wheelchair might be for her, I'll make a list below of what we know her current needs are. I also got our homebound paperwork signed, and the ped agreed she needs homebound services at least until December, and maybe through flu season as well. If she was to catch a cold even right now it could put her at risk simply due to weight loss, but something more serious could cause a more dramatic decline. We'll all be getting flu shots this year and the ped suggested Synagis for Emma, but we're pretty sure insurance won't cover it because she's over 2 yrs old. Synagis is a vaccine to prevent RSV, one of the the primary causes of death in premature and high risk infants, and also a leading cause of hospitalization for children under 2 yrs old. We have Emma's IEP next Tuesday, and I don't know how soon after we'll get her started, but at least we're getting that ball rolling! The school is aware she'll be needing homebound and said they're prepared to set that up for her. More on the IEP and questions there later :)

I love leaving the doctor's office with the feeling of "yay, let's get going and doing and moving" and not "let's preserve things until next time." And... I like going when no one's sick and we're just dealing with all the great things the kids are learning and doing and not sickness or other health concerns. If only they were all that way!!

Ok, here's what we need in the way of support for Emma, or at least this is what I understand her needs to be:
Head support
Trunk support
5-pt or harness belt for upper body control
tilt in space or recline option with option for 85-90 degree seating
folding or collapsible without too much of a process
not sure about the need for one equipped with tie-downs yet


  1. What great reports for both Micah and Emma! It has to be so encouraging, and the pediatrician's good suggestions and input about, well, both kids' "input" sounds so on target and helpful.

    Wheelchairs can be individualized for individual needs - having such a precise list of Emma's requirements should be very helpful to the wheelchair engineer/techician designer. Having her own wheels will really get her up and going!

    Best wishes,
    Susan in Ky

  2. becareful even when she gets the rs vaccine, kylie was getting the monthly shots when she was a baby and STILL got RSV and ended up in the hospital with a partially collapsed lung.. thanks to her big brother for sharing what he caught at preschool.

    Insurance MIGHT make an exception due to the fact that she is very high risk still at her age and that she lived in a hospital like setting her whole life.

  3. I know that synagis is mostly given to children 2 and under, however with Emma's heart repair and recent health issues, perhaps the you and the ped could fight for her to be covered. Good luck with that, I hope she qualifies for it, even though the shot every month is not fun, it really works. I am so glad to hear that your visit was a good one.

  4. Well, Micah needs to teach Pierce a thing or 2 about gaining weight. At 2 1/2 he's only 25lbs.

    Great report all around!

  5. Wow, Micah is so big now, how wonderful!

    Emma is about the same size as Amanda, who is also too skinny, I can't imagine a 5 year old being so itty bitty, but she is strong regardless, isn't she! They had to be tickled at how well she is healing, I know you all are.

    Will they continue to work on getting Emma walking, or is the wheelchair her means to get around from now on? Did I miss a post?

  6. Meridith, you have a good list going, another suggestion I would have is to have wheels that can go thru gravel well. I swear I encounter so many places with gravel and have a hard time moving a stroller or wheelchair thru it.

    Great news on the doctors.

  7. Great reports. IF (I know that a big word right now) you get her on Medicaid, they might pay it. That might take 3 or 4 years to get approved though. ;)


  8. We just ordered a medical stroller for our son with Ds. We went through his PT with a Rx from our pediatrician. A rep from the company took all of his measurements, asked lots of questions, and set us up with head and back support, lots of padding, and all kind of goodies! Here is one site to get an idea of what is out there. Here is thier site and what they offer if you have any questions email me at Iam also on downsyn!

  9. Wow! glad to hear your visit to the ped. was so good and positive. Now things should get fun!


  10. I would have the Dr. contact the insurance co. about the shots. We did that last year and got the third year of shots. I didn't think they would pay, but it was worth a shot and for us it worked. Good luck.


  11. Once Emma gets started with PT, they should really be helpful in ordering an appropriate wheel chair. Also, if you contact some vendors in your area--they are typically pretty helpful too. I would not recommend randomly ordering a chair you see in a magazine or online--even with all of the support you think she will need as there may be a much better option for her that the PT or vendor would know. Medicaid will typically pay for one chair every several years, so if she gets approved for that an you get the chair through them, make sure you order one that fits her now, but more importantly gives her some room to grow into. Medicaid will also cover orthotics, etc. Getting the chair may take a few months though.

    Good luck, Your kids are gorgeous!@


  12. Oh Meredith that is fabulous news!!!

    Keep up the good work with those kiddos of yours. YOU ROCK MAMA!!

  13. our cp clinic at josie's children's hospital were great in measuring josie and giving recommendations for her chair. they then sent all of those to the vendor who are supposed to get prior authorization from insurance and medicaid. josie loves her zippie tilt in space. but the prior post is right for us too, it is hard to go through gravel. its great on smooth though. it is hard to collapse, but they are going to help us out with that. happy chair hunting!

  14. Congrats on the "well visits" and all the good reports.

    I don't know about for kids, but many large rehabilitation hospitals, like McGee in Philadelphia, have wheelchair clinics where they are very knowledgeable and some times have sample chairs with different options that you can try out. I bet the pt service at the nearest children's hospital would be a great resource.

    Good luck with looking for the right chair, mobility is such a great gift.


  15. Isn't great news just...well, great!!!?? So often we go to the docs and hear only bad. So yay!! for all of you and the good reports! Enjoy!

  16. We absolutely love our kid kart wheelchair,Has all the support needed for our little guy who is almost 6 now, and is much like a newborn physically. even has a sun shade available. He got it when he was 2.

  17. I am so happy to read this Meredith! The kids are doing great!

  18. I would say let a PT who has ordered other wheelchairs help you out. Also make sure the company measures Emma. If you are going through Medicaid after approval comes back (4-6 months sometimes) measure her again so the chair is the right size. You will want room to grow because it is hard to get approval again for several years. I would not recomend a Kid Kart because of her age and likelyhood to grow. These can't grow as much as wheelchairs. Tilt in space will be a must. They will be able to get the lateral pads, trunk supports, abductors and anything else she needs when you work with the PT. Have them show you examples of head rests and you can discuss the different options. Good luck!
    Taya - EC PreK teacher in NC