Day 538: Catching Up In Weight! 

Madi and Jack started their day by going back to Grandview. Jack had a quick stretching session with Kate which is always a scream fest – but sooo good for his neck muscles. Madison’s referral for Botox went through and she had a check in this morning to assess her muscle catchments, range, extension etc. The good news is her catchments have stayed consistent and her range after the catchment can still happen. Her hamstrings are still her biggest enemy. They showed a few degrees less today with range. It’s a tricky battle between the Botox being gone now, a growth spurt and spastic muscles. Her third round of Botox has been booked for the end of September and a new block of therapy starting shortly after. They will also do another set of hip X-rays to keep on track with monitoring once a year to look for migration/change. 


After a great assessment at Grandview, Madi and Jack hung out at Nana’s while Mommy ran errands for Brazil!


March of Dimes posted some great pictures of Madison from their summer camp this summer. Madison attended 4 weeks of camp and loved it!


Before the end of the day, both kids had an appointment with Dr. Aref their pediatrician. Jack had his ear checked and all his draining issues have cleared up. He now weighs 21 pounds. Madison has grown 2 inches and weighs 29 pounds! It’s crazy to think that they are about 2.5 years apart in age and only 8 pounds apart in weight. Madi had not been to see him in a while so we had lots to discuss: digestive issues and upping her laxative and introducing flax seed and fish oil, magnesium and more fluid intake throughout the day. We also discussed SDR and he has sent a referral to a neurosurgeon to see if they will even see Madison. Madison will also be referred to an ENT to assess how her overflow of tone is affecting her vocal coards and “creekiness” sound in her voice. 

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