WARNING: Long post ahead!
Why was I so worried? The appointment wasn't so bad after all. I guess I have come a long way, maybe I don't let these appointments upset me like they used to.
Greg was able to leave work in time to come with us. Having him there with me is always so calming, and his big strong arms to hold Truitt helped too. I think it was important that Greg was there, because he often has to miss these appointments due to the fact they are always during a time that he is at work. Thanks to his wonderful boss, this time he didn't have to miss out.
At the appointment we saw Dr. Gelfius - Physical Medicine, Dr. Keen - Orthopedic Physician, a Nutritionist, a Physical Therapist, an Occupational Therapist, and a Speech Therapist. We also spent lots of time talking with the social worker. Dr. Newmeyer, the Developmental Pediatrician who is the head of the CP Clinic, was out of the office yesterday, so we saw her Nurse Practitioner instead.
Here is a break down of who we saw, and what they had to say about Truitt...
Nutritionist - This is who I was really looking forward to speaking with. We are having such a hard time with Truitt's feeding. I am so worried that we are not feeding him enough and whether or not he is getting enough liquids each day.
He is still eating stage 2 baby food for every meal, she agreed that continues to be best for him. However, although the consistency is what he needs, jarred baby food will no longer give him sufficient nutrition for his age. She wants us pureeing real table food, the food that we eat. Most nights we do give him whatever we have for dinner, but our food processor leaves the food gritty. Ironically I have been shopping around for a baby food maker. If you have any suggestions, please let me know! I need a good one, that will last me several years. Along with the pureed food, she wants us giving him meltable solids at least twice per day. Our hope is that eventually we can introduce chunkier foods to help him progress with his chewing abilities.
Next we spoke about the bottle. It takes about 5 to 10 minutes just to get him to latch alone, and then the bottle itself will take anywhere from 20 minutes to an hour, for only six ounces of milk. That's if we're lucky! At least once, sometimes twice daily we don't succeed. Do you know how horrible I feel as a mom sending my baby to school without drinking a single thing? It's so upsetting. I think Greg and I both are at our wits end, we don't know what to do to help him. It is so frustrating, because I know he can't help it. His muscles don't do what he wants them to do.
The Nutritionist suggested feeding him more liquidy foods (i.e. apples, pears, peaches, squash, yogurt), anything that will help give him some of the 40 ounces of liquid he needs per day. Currently he is only getting roughly 12 to 24 ounces from the bottle. She also encouraged us to keep working with the sippy cup. Several times a day. Easier said, then done. Overall she was thrilled with how solid our boy is. He is now 31 pounds, and 36 inches long. Despite how difficult feeding him is, it surely doesn't show. According to the Nutritionist, whatever we are doing is working. There is absolutely no concern that he isn't getting enough. Ha!
Dr. Gelfius - Physical Medicine - We just saw Dr. Gelfius in December so his time with us was brief. He was pleased with Truitt's ability to relax his muscles while in a resting state. While sitting comfortably in daddy's lap, he felt that Truitt had normal tone and range of motion in his legs and left arm. His only concern is his right arm, Truitt presents a lot of spasticity in that arm. That is the arm he will receive Botox injections in.
Although I did say Dr. Gelfius felt his tone was within the normal range while resting, does not mean his tone is anywhere near normal all the time. This is where Truitt's formal Cerebral Palsy Classification diagnosis comes in to play. Ready for it??
He is a Mixed Tone Bi-lateral Hemiplegic, with right upper and lower Hypertonic, left upper and lower Hypotonic with underlying spasticity.
Let me break it down for you. Mixed tone simply means that he has low tone and high tone in different parts of his body. Bi-lateral means both sides, Hemiplegic means that each side of his body is affected differently. Hpertonic is high tone (stiff muscles), Hypotonic is low tone (floppy muscles). In all four extremities his presents spasticity, which is increased tone and stiffness of the muscles. Truitt has more spasticity when he is active or feeling insecure. While when he is comfortable or resting he has lower or more normal muscle tone.
He could also, more generally speaking, be referred to as a Quadriplegic. Meaning he does not have normal use of any of his extremities.
Dr. Keen - Orthopedic Physician - Dr. Keen ordered an x-ray of Truitt's hips. It was done there in the clinic while we waited. He said that his anatomy from an orthopedic stand point is perfect. Truitt has great range of motion in his hips and legs. According to Dr. Keen, by the way Truitt uses his hips and legs right now, he won't have any orthopedic problems in the near or far future. He said he wished every child made his job that easy! :) We were happy to see him walk out the door so quickly too. A little reminder to count our blessings. Hip problems are way too common in these CP kiddos. We're so glad he doesn't fall into that statistic.
Helen - Physical Therapist - Helen has become a friend to us. She is always so happy to see us, and just loves Truitt. She is beaming with knowledge and such an advocate for all local kids with CP. She is very well respected by other PT's and it is also such a pleasure to see her work with Truitt.
She gave us a lot of helpful tips on how to continue working towards Truitt gaining some independence. Lots of tummy time, supported sitting, and she wants us to seriously look into getting Truitt the Pony Walker. If only money weren't a factor, we'd have one already!
We briefly spoke with Helen about what to expect from Truitt as far as gross motor in the future. They don't say much, those therapists, because truly they can't say what he will or won't do. But she did hint that she hopes Truitt may be able to stand or take a few steps with help judging by how well he stands supported right now. Honestly, as his mom, I am prepared to never see him walk. I just don't feel that he will. And that's okay. Taking a few steps, or standing with help would be great. I know he will be a big boy some day, no match for his 5 foot tall momma. Any help from him I can get, will be much appreciated.
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