Along with Crewe's diagnosis of cystic hygroma, he has a condition called hypotonia (generalized low muscle tone). The combination of the two means developmental delays in his motor and speech skills (fortunately, there is no delay in his problem-solving skills).For the past seven months Crewe has been receiving weekly speech, occupational, physical, and developmental therapies to help him progress. These therapies are a big investment in terms of time, funds, and emotional energy, and they are finally beginning to pay off. Crewe's motor skills are now at the level of an 8 month-old.
For the first time in his life he is voluntarily putting weight on his legs. He recently started commando crawling. His trunk and lungs are also finally strong enough to allow him to clear his trach on his own. A year ago we were suctioning Crewe's trach 20-30 times per day. Now, we suction him just 2-5 times per day.
Crewe was recently seen at the Craniofacial Clinic at St. Joe's in Phoenix by a number of well-respected pediatric specialists including oral surgeons, dentists, plastic surgeons, geneticists, and a head & neck surgeon. They recommended several actions, including seeing a developmental pediatrician and geneticist. They really wonder if there is more going on with Crewe than what meets the eye.
Last week we met with the developmental pediatrician they recommended and she was fabulous. She suggested:
- These fancy shorts to help align his hips and allow him to get in the hands and knees position
- Firm, high-topped shoes to provide ankle support and hopefully reduce the chances of Crewe needing leg braces to walk
- Hippotherapy (horseback riding with a physical therapist) when it gets cooler
- Some special stretches to get his shoulders and back in proper alignment (it's hard to be aligned when one half of your face is heavier than the other half)
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5 comments:
Ok that picture has tobe the cutest ever. Sounds like things are going well. Thanks for sharing!
i am so happy right now i don't know what to say! Crewe is so adorable and so touching to here about. Everytime I hear about him I just smile! Love that the shorts and shoes are showing improvements with him. Love and miss you all SO much!
Wow, that picture really brings a smile to my face. Thank you for the written update. It helps me to understand more and more. I am happy you are able to learn things all along the way.
Thanks so much for keeping us posted.
Oh, how I love you.
Nana
Hallelujah for experts. Sounds like he has a great team working with him (caregivers and parents!). Connor had genetic testing b/c they thought there was link between his autism and some physical traits, but it showed nothing. But it's good to be thorough nonetheless. Great progress, hope it continues! What a darling little guy, I love his smile.
I love your updates about Crewe. It is great to hear how he is progressing and growing up. You guys are doing a fabulous job for him. I hope the testing provides some of the answers you are looking for. he is adorable!
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