Eden has a lot going on lately. You know, a day in the life of a 3 1/2 year old (who happens to have Cerebral Palsy)...busy, busy, busy. This morning we had our first meeting with the multidisciplinary clinic at the Program for Exceptional Families in our area. Eden's physical medicine doctor oversees this program, and we decided to give it a go. The appointment lasted for over three hours, as we rotated through five teams of specialists, including the doctor, nurse, PT, OT, speech therapist, orthotist, equipment supplier, and social worker. There are usually a neuropsychologist and a nutritionist there as well, but they were out today.
Let me first say that I was (not unusually) anxious about this appointment in the days leading up to it. Eden has NOT been eating great for the past two months. She has been sick A LOT, and has had an accompanying and predictable increase in reflux, vomiting, and general grumpiness about eating. Her weight has leveled off since the end of January, losing a little in February, then gaining it back, then kinda hovering up and down through March. I started ruminating about weight gain and eating and reflux this past week, and was convinced that the doctor would mention the dreaded t-word. BUT, I can happily and with great relief report that it did not come up. She has gained about 3 pounds since her last visit 6 months ago, as well as a couple of inches in length. She is on the chart in length for a "normal" 3-year-old, and is getting *closer* in weight. Her BMI is also *closer* than ever before to "normal." If you chart her on the CP growth chart, she is above the 10th percentile in weight, and close to the 50th in length. So, okay Billie. Take a deep breath, and RELAX...
Still, I must insert a small rant here... Feeding these kids is the bain of my existence. I hate it. It sucks. So there!
All in all, it was a great appointment. Everyone seemed to really listen to our concerns, and it was nice to have everyone on the same page. The team will meet together within the next week and will write up a report and a treatment plan for the next six months and send it to us. If you have a child with different/special/unique (whatever) needs, you know that coordination between specialists can be a real pain in the rear, so in many ways this approach was a breath of fresh air.
The most significant changes, or tweaks, to our current plan that came out of this appointment were:
1. Increase dosage of reflux meds from 15mg of Prevacid daily to 30mg.
2. Reinstate use of Periactin as appetite stimulant (we had some concerns that this med might be causing Eden's respiratory viruses to become worse, but this doctor doesn't feel this is the issue)
3. Think about private speech and feeding therapy with the therapist at this clinic.
4. Get hip x-rays to use as baseline. There is some concern about left hip socket and shorter length of right leg.
We are also going to look into hippotherapy (therapy on horses), swim classes, and Euro-Peds or Conductive Education this summer. The E-P or CE will depend on whether we can manage, without significant disruption to our overall happiness and emotional well-being, to fit it into our schedule. It is all a delicate balance.
In addition to our big appointment, we have a boatload of new equipment that I wanted to review here, and share my thoughts on.
First off we have the new Columbia High-Back Wrap Around Bath Seat with an abductor. At first I thought this seat wasn't going to work. We put the abductor in as far as it went, and tried it out, but Eden was still scooching her bum all the way forward and ending up with a very rounded back in the tub. As with most equipment, we made a few tweaks of our own including drilling another hole to move the abductor further in (thanks Papa!), and fastening the mesh seat bottom to the back of the chair so it wouldn't slide forward, and voila! Now it is working out fabulously.
We were extremely picky about the bath seat for several reasons. First, we didn't want it so huge and cumbersome that Holland couldn't take a bath at the same time. Second, it had to be all the way down in the water or Eden would be forever lurching out of it. She LOVES water, the more the better, and is not content unless fully submerged. Lastly, it could not be reclining in any way. A lot of the bath seats out there recline slightly, and while Eden could probably use the support, she WILL NOT lay back, and spends the entire time trying to sit up, which ends up as a total struggle. I was very sure that we would never find anything to work for her, and am pleasantly surprised with how well this seat is working out. It's a little tricky getting her bum clean, but we improvise and get the job done.
The Special Tomato Multi-Positional Seating System came in as well. The jury is still out on exactly how well this one is going to work out for us. For one, part of my semi-numb brain didn't process exactly what we were getting, and I half-thought that we were getting the Special Tomato Floor Sitter, which would replace the Tumbleforms Feeder Seat that we are currently using. At the same time, I KNEW that the chair we were getting was the one that had foot-plates and could double as a car seat, which the floor sitter does not.
On the pro side, Eden sits fabulously in this chair. It is very supportive and seems extremely comfortable for her. She likes sitting in it, and it works well as a seat for writing or coloring, doing projects, and eating snacks. It is soft, the desk has a grippy surface so things don't slide off easily, it is easily adjustable and will grow with her for a long time. On the downside, it is HUGE, takes up a lot of space and is HEAVY, so not very portable at all. We have the wheeled base, and the PT mentioned looking into the stroller option, but I think we might wait to see how useful it will turn out to be.
Another major development in our household...we've gotten ahold of a little Quickie manual wheelchair, and Eden can DO IT!!! Back story... On Monday at school we ran into a little boy with Spina Bifida using this tiny little manual wheelchair. He was awesome, could get himself in and out of the chair and was very proficient at getting around with it, even doing some cool tricks:) I had an AH HA moment as soon as I laid eyes on this little chair and HAD to try it. I asked the little boy if Eden could sit in his chair, and he was very happy to let her try it out. Eden sat in it beautifully and her little eyes lit up. We didn't try moving it that day, but I was sure she could do it, given how well she has been moving her Rifton Dynamic Stander lately. On the way out I mentioned it to the OT, who said she thought they might be able to get ahold of one for Eden to try.
On Wednesday I got a call that they had one, and on Thursday we got to try it out at PT. It was all so very exciting, because of course, little Eden knew just what to do when she got in it, and very happily started rolling herself down the hallway at school. She quickly learned to back up, turn both ways, and spin around, as well as go forward. We were all so excited and her speech teacher even got a little teary.
We brought the chair home yesterday, and she has already spent several hours in it. She LOVES it, asks for it, and wants to show it off. Possible down side...she won't go in her pony at all. "I don't want walker...I want WHEELCHAIR!" I'm hoping that the novelty will wear off and eventually she will use both equally well. I see this chair as a really functional way for her to move around in small areas, like home, school, other people's houses, and even at the store when Holland is walking for quick trips. The power chair will still be more functional in the long run with big trips, like to the Zoo or an amusement park or the mall. The power chair has the lift feature, which will be awesome in allowing her to lift up to sit at the table at, say, a restaurant. But the manual chair will be SO MUCH more easily transported for smaller trips. It also has a push bar to use if she is tired or can't keep up. Very handy. It still needs some tweaking (what doesn't?) to move the lateral pads in, and to keep her feet in place, but overall it is in excellent shape and fits her well.
I am super excited about the manual chair for purposes of building upper body strength (MAJOR bonus), and working with both hands bilaterally (good brain exercise). So whoo hoo for the possibilities!
If you made it this far, you must really love us, so please click here and go support Team Holland and Eden as we walk to help save babies! The walk is two weeks from tomorrow, and we still have a loooong way to go. If everyone reading would give just $5 we could surpass our goal in no time:) Please help us to be the #1 Family Team for the third year in a row!