Sunday, July 29, 2007

Chew On It

I had previously written a long post about whether or not we were increasing Clare's services. Then I deleted it because it was long and boring and basically my thought process in words. Plus I just finished printing out Clare's hundreds of pages of medical records for the WS doctors she will see in the future. So now I am brain dead. Aahhhhh....

Shawn installed cabinet locks, toilet locks, and the gate on the stairs this weekend because Clare is on the go. She took a couple bad falls last week (one resulting in a bloody nose and the other in a cut lip) so she has been more cautious this week. I did find Clare in the bathroom on Sunday - the toilet lock is doing its job in keeping her out of the toilet. However, I found her unrolling the toilet paper at lightning speed with sheer joy on her face. Yes, Clare, you outwitted us this time!

Shawn and I are still mulling over whether to add more services into Clare's week. I did discuss with her PT at length what Dr. Mervis said. We have decided to continue OT on an every other week basis since there are many things that Clare still cannot do on an OT level - stack blocks, sort shapes, dress herself, to name a few. We may increase that to OT every week and possibly get her on the waiting list for speech once a therapist opens up. Yet nothing is set in stone. I do not want Clare's life to be dominated by hours of therapy a week. I want her to be a normal child, too. We stay extremely busy all year round with various activities, outings, and playdates. I don't want to sacrifice Clare's therapies to a busy life, but then I don't want to sacrifice having fun, getting out, lounging around at home, keeping my sanity, etc. to being a slave to OT, PT, speech, educator, whatever. Plus Shawn and I do therapy with Clare all the time. Almost every activity during our day is some kind of therapy when you think about it. Maybe it's not hard core for an hour, but we work on walking, sitting up, play games, make animal noises, name objects around the house, play with blocks, puzzles, shape sorters, all that stuff. So Clare IS receiving therapy even when she's not.

I have started freaking out again about Clare's weight. I admit I am freaking out over something I have little control over. In the past few days, I have noticed how painfully thin Clare is. She was only wearing a diaper the other morning and, as I watched her play, I had a hard time looking at her because of her bony ribs and shoulder blades. There is not an ounce of fat on her. The swallow specialist and nutritionist return in two weeks for their follow-up with Clare. (Which I know is the primary source of my freak-out.) Clare is a tad more adventurous in her new love for dips (mainly anything sour cream based), but other than that, we have seen no progress in her eating. I want to be able to show them how great Clare is doing eating-wise, but it's just not true. At the WS picnic, we observed that the majority of the children with WS were equally as thin as Clare, but that still does not make me feel better. It is so frustrating to not be able to get your child to eat - especially your extremely underweight child. She still has difficulty chewing and swallowing and much food ends up coming back out of her mouth. Mealtimes have become a battle with her. We are experimenting with putting the high chair away this week, and Clare is joining us at the table in a booster seat in an attempt to make eating fun. Dinner tonight was finally food-throwing, temper-tantrum free, but her eating still was not stellar. As I so eloquently put it at the beginning of this post, aahhhhh.....

8 comments:

Nancy said...

I hated undressing Erik at the doc because he ran around and you could see his skeleton. I almost cried every time...but he is so much better now, and I bet Clare will follow suit. I just hate seeing my kid's ribs sticking out like he should be in a Save the Children ad. Color me Sally Struthers.

Anyway, I wonder if we will ever find the "perfect" balance between normal and special in terms of how we approach each day. If you figure that out, please give me a call. :)

We are thinking lots about you.

Katie said...

I must laugh as just as i was reading your comment about Clare's appreciation for toilet paper, i heard a strange noise - upon investigating i found Lachlan had managed to get into the toilet and had papered the floor!
Therepy. Its true what you say- everyday is therepy really. At the moment Im just glad to finally be off all the waiting lists and actually getting therepys! Ask me again in 12 months and i will probably feel differently.
Sigh, im very lucky with weight because Jaiden is a chunk.
He was a skinny little baby but since he turned 2 he just started eating everything and since turning 3 he has really chunked up - he is still very short - so he is kind of a chunky dwarf - sort of reminds me of a Staffordshire Bull Terrier....
Take care :)
xxoo

Laura said...

AHHHH the never ending "how much therapy" debate.....all the experts will tell you therapy, therapy, therapy and if you have a spare half minute, add another therapy! You can drive yourself crazy with all the things people say you "should" be doing. In the end you need to decide what works best for Clare and the whole family. I think these experts sometimes forget that WS is not only the individual, but the family as well. If all you are doing is running from therapy to therapy, stressed and tired, what quality of life is that for anyone?
When Michaela was 3yrs, I had to take a step back from all the therapies, it was driving me insane and taking away from our family. And I came to the realization, that I, like you are too, Teresa, was doing most of the therapy anyway in our day to day activity. How much of a real benefit was another 1/2-1 hour session going to add? My conclusion was, not much....and the benefit of a less stressed mom and as much of a normal life as possible with playdates and the the activites we did, completely out-weighed adding another hour of a therapy.
You, above anyone else, know in your heart what will work best for Clare and your whole family....follow your mommy insticts--guilt free.

Kerry said...

Thanks goodness you put the toilet lock on BEFORE Clare discovered it!! :)

Teresa, you need to do what is right for your family. I know just from spending the afternoon with you guys that Clare is unknowingly getting more "therapy" than the docs showing up can account for. Plus I am sure Jamie helps out in many ways too, not realizing - Michael does that for Brady; Brady reaching out for him, Brady grabbing for Michael, Michael dancing with him, etc. I know that I needed the more therapies because Brady is not doing too much still - but Clare is walking and playing. She took out all the CDs when I was at your house! If that ain't great OT, I don't know what is :)LOL

Heather said...

Caleb loved unrolling the toilet paper too :( I finally put the roll on backward so the TP hangs down the back, not down the front of the roll, and that helped for a while. He was a little confused that the toilet paper wouldn't do what it normally did. He did eventually figure out that all he had to do was roll upwards instead of downwards, but it took awhile.Now I just instincly put it on that way. In terms of therapy, it gets so much easier when they start school because most of it should be done while they are in school. Then it will just be making sure they are getting exactly what they need while you are not right by their side. It's just a never ending battle.... Cale is still a skinny thing. I wish I could give him some of my extra chub. :) I would be more than happy to do that for him..

Lisa R said...

I know nothing about Skinny kids my always end up little fatties....It just took Tatum a little longer to get there....Emma still loves to pull out more TP the necessary... I think that Tatum needs more therapy at this pt although I see your point about a normal life I do not think at this point the life Tate has is "normal" she is no where close to where Emma was at 19m.

I bet having her sit at the dinner table helps...Tatum has never had a high chair at our house she has the set that clips to the Island so she is always eating next to Emma...

I hope it all works out :)

Anonymous said...

Teresa & Shawn - It sounds like Clare is getting constant "therapy" because you both are so aware of her 'needs' as well as her shortcomings. I know therapy is great, but you need to do what works for all of you. There are therapies that you will not be qualified to "do", but lots of others that you can reinforce daily. Good luck with the 'proofing' job- it is never ending! Love and kisses to all, Aunt Joan

camille said...

I just wrote a long comment out but lost internet connection and gone it went. Anyway, I understand about the not eating thing and something that has really helped us out is giving him smoothies. You can buy them in the yogurt aisle and they are packed with protein, calories and fat. My dream meal! mmm... They go right in a sippy cup and are great for an on-the-go snack. Maybe that is something Clare would enjoy, especially in the hot weather!