Friday, April 11, 2008

The Possibilities are Endless

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!


Anonymous said...

Wow! So much going on!
I just wanted to add, we've gone to the Program for Exceptional Families for PT, and really loved both of the PT's. Unlike others with whom I worked, they were very interested in how things are working out, and willing to see the girls for follow ups on their own time. (Don't go there anymore because of the distance... but they were great.)

Anonymous said...

what's the dreaded 't' word?

K said...

Eden is a new super hero: Gadget Girl! It's great to see her getting so well accommodated. I can definitely understand your concern about her not wanting to use her pony walker, though. Fortunately, she's approaching the age of better reasoning and understanding and you can "put your foot down" more effectively.

I sympathize with you so much on the feeding issues. I've learned repeatedly that you can put food in from of a child, sometimes even into their mouths, but you can't make them swallow and if you try, you'll see it again and maybe even wear it!

I have a few questions about the feeding issues, if you have the time and inclination to answer them. As a childcare provider and doula, I like to learn as much as I can about as many things as I can because I never know when I might be in a position to offer help. I'm also in the process of adopting a child from China and I've learned that many of the children have eating issues, some severe enough to require feeding tubes.

First, can you tell if Eden has an appetite? In some of your posts, you mention that she's eaten quite a lot, for her, so you knew at that time she was hungry, but how about on the average day?

Second, do you feed them three to four meals a day or do they graze all day?

You've mentioned that texture is a big factor and that the girls are so smart that they can detect anything you've added to their yogurt. My heart really goes out to you on this one. I remember one of your posts mentioned that you tried adding something to their yogurt but it was detected right away. I've not tried it myself, but it made me wonder about adding something a day ahead, letting it soak up the yogurt and then running it through the blender. Have you had any experience with this?

When I was making liquid food for my grandmother in her last weeks, I did get heartily sick of the smell and taste of Ensure. It's so sweet! I wish there was a savory flavor, like gravy, so add to whole grains which I could have cooked way soft and liquified or creamed potatoes. I laughed when you posted about adding butter to everything. My aunty and I did that with my grandmother, too.

I bet you could write a book on the things you've tried.

Okay, another question: If Eden is not ill and goes without eating for a day or two, do you notice her getting weak, lethargic or cranky? It looks like she burns a million calories just getting around and playing.

Have there been times when the girls seem hungry and want to eat, but don't due to texture and other issues and prefer the feeling of hunger to what it feels like to eat?

Again, I really do empathize with you on this. Seeing our babies eat and grow is probably the first measure of successful parenting we pride ourselves on at a primal and intellectual level. I can understand your deep and never-ending feelings of intense stress over this.

I'll continue to follow your blog and cheer you on and pray for you and your family.

Billie said...

Pam: Have you talked to the speech people there? A friend tells me that they really like their therapist. I think her name is Kelly.

Anon: The dreaded "t-word" is in feeding tube.

K: Lots of great questions. I am working on a post about eating, and I will address them then. There is just too much to put in the comments section! Like you said, I could write a book!

Anonymous said...

Hey just wanted to say that my son uses periactin off and on, and I noticed that it definitley made cold viruses worse---more wheezing. If you look at the mile long list of side effects for the drug, that is actually one of them. Along with some other scary ones. I do not feel it makes much difference in my son anyway---he does not like to eat--and honestly the side effects really bother me. He will be 3 June 1st and weighs maybe 23- 24 lbs. He is normal height however and hc.

Isn't trying to feed kids who do not want to eat awful??? He can wake up in the morning, not eat one single thing, then take maybe two bites of something at lunch. Lately he does not even really want the pediasure that much anymore--he only 8 oz today instead of near 20-24. It is like he literally lives off air! And he was a 3 lb 32 weeker....He was 20 lbs at 2, so he will have gained 4 pounds this whole year--and this was a healthy season(knock on wood--last year this time he spent a week in the hospital and probably would have been admitted again if my husband would have let me take him to the ER as I should have a few weeks after that). It makes me want to cry...but like the endocrinologist said, he is obviously a healthy child, has good skin color, actually does have a layer of fat, runs around, etc---that he has 16 years to worry about growing. I try to tell myself that when I am buying my almost 3 year old 12 month shorts, and size 6 shoes.

He was IUGR-he measured 3 weeks behind when born due to my severe preeclampsia--supposedly they take much longer than non-IUGR preemies to catch up. Who knows if that is true. It doesn't help that he went a year with an undiagnosed rare heart defect that was strangling his esophagus and trachea (double aortic arch).


Anonymous said...

I love seeing your girls grow up and assert their independence and personalities. I especially enjoy the posts where you insert quotes from them such as Eden's comments about her wheelchair or Holland saying that she didn't like her Dora training pants. With my Asperger syndrome there is a posiblity that I could have a child with autism if I concieve someday. I hope if I have my own child with special needs in the future I will do as good of job as you do with your girls. I especially admire your positive attitude.

Dandelion Quilts said...

Hey, you've been tagged at my blog. I think you've already done this before, but I figured you'd come up with something. I miss you, Billie. Also, that is great about the wheelchairs. I am glad that they reviewed your claim. I am coming next August to the quilt day...I hope to see you there. Matt and I will be posting a donation soon. - Your old college roommate

Justinich Family said...

Wow, tons of new equipment, that is always a bittersweet time in our house. Eden looks so great in her bath seat and special tomato chair. We are looking for a feeding chair for Evan. Exciting news about the manual chair as well.

Stacy from CP moms

winecat said...

My goodness Eden has been busy! Good for her. I waiting to see when she challenges Holland to a race.

Anonymous said...

Very excited to hear that you-all might try hippotherapy. My client's trunk control has improved and so has his spirits. Can't wait to see the pics of Eden up on a horse.
Good job being such a super advocate for Eden and Holland. I am so proud of the both of you.
Love ya, Laura

Anonymous said...

Wow! Y'all have been BUSY! I'm so glad to hear that the equipment is working so well for Eden.
I was also glad to hear that you're looking into hippotherapy. It may be a little scary at first to see your tiny girls on top of a big horse, but I bet they just love it.

Monique in TX

Kathryn said...

Billie- you are so all over it in everything for the girls but especially equipment. Thanks so much for posting about it always and sharing it. It really helps. I love the tomato stuff- they look soft. It would be so nice to have Ellie not surrounded by heard metal all the time. Eden is so strong to be able to use that chair! Go Eden! You rock Billie! Now I have to go do more homework on equipment. Ellie needs a new stander and I was thinking of the dynamic one...

CP and Me said...

Phew, that's a lot of new gear and info! Ditto Kathryn: you really ARE all over it with your girls' care. First, how awesome that you can go to a center like the Program for Exceptional Families. Having everyone at the same table is so key to getting consistent care. We are lacking that sorely where we live.

Also, I hear you about pre-appointment anxieties and I can only imagine the weight gain/g-tube fears. Horray for dodging that bullet! That's so awesome that she's on the chart for length and making progress on weight. With Hannah weighing in at somewhere around 19lbs at 2 years, I dream of that day:)

On equipment: you are making me realize that adjusting/tweaking/further evaluating is all part of the process. Hannah's new feeding chair and walker have been with us for a few weeks and both have some slight issues. I am so impatient and once something comes, I want it to be perfect NOW. After all, we wait so long for these things that our kids need, we want it to all work out right away. But you're reminding me that it might take a little more work but it's so worth it to get things JUST RIGHT.

Finally, your comment about the delicate balance re: CE/Euro-peds really struck a chord with me. We are looking into hippotherapy and swimming for Hannah and have also dabbled in some adapative yoga. Everywhere you look, there is something to try and it's so easy to lose sight of the importance of just being a family. I'm struggling with this right now and it was good to know I'm not alone. I think the fact that you are even thinking along those lines means you will find that right balance.

Andrew Sutton said...

Thank you so much for giving me something to think about:

Andrew Sutton

Anonymous said...

Hi there
I recently found your blog and have been reading back on Holland and Eden's story. They are soooo cute!!!

I was wondering if Eden takes swimming lessons? You mentioned she loves the water... I work with children with phys. disabilities, and I've found that so many kids with CP LOVE water and swimming b/c it helps relax their muscles, and reduces gravitational pull making it so they don't have to work so hard to move. A lot of kids actually show up with specific exercises and stretches to do in the pool.

I love how you've adapted Eden's equip... often the kids that are the most independent (regardless of the severity of CP) are the ones that have the most supportive families :) I think you guys are doing an amazing job!

Anonymous said...

As a conductor I am interested in how and where you are considering a conductive education programme for your children.
Maybe I am able to help in your decision making on this.

Brooklyn said...

I am not sure if you already have the savings card or not, but if you go to prevacid's website you can sign up for the card and can save up to $25 with each refill!

Jacolyn said...

The manual wheelchair is great! I wonder if Grace would do well in one of those?

Kim said...

Billie - I hope that you meet your goal for the March of Dimes. I'm inspired by your blog, and I'm sorry that I couldn't give more, but I hope that each person who reads your blog makes some sort of donation - even if it is only $5. We should all find some causes we believe in and sacrifice a bit of dough for the greater good. Good luck!

Shannon said...

The possibilities sure are endless!!

I have some experience with the decision of whether or not to get a g-tube...we had to decide on that shortly before Gage's 3rd. birthday. It was one of the hardest decisions to make to date and at the time I'll admit I felt so unsure of it...but now I am so pleased we decided to go for it.

I don't know if you hear it enough but you are an incredible mother. I leave your blog in awe of you every time I visit.

Kathryn said...

That's so awesome that you're getting all this equipment! We have the special tomato chair as well. Lily hates it, so it's currently in the basement until she gets older.

Lisa said...

I've been MIA b/c we've been so busy. It is good to see the girls doing well (and gaining weight!).

Hopefully one day, I'll update. I'm so jealous of the easy by which you seem to get equipment for Eden. We ordered a jinx stander and a squiggles seating system back in November and are still waiting clearance from the insurance co. So frustrating!