We have another new term to memorize. I seriously don't know how I do it anymore. It's like I've started to ignore the multiple issues and only focus on the now. Reality doesn't sink in often but when it does it's another slap in the face. How can one kid have so many health problems? Why can't we just enjoy life without all of the medical stuff?
Rant over.
So the two steps forward?
Step 1: Jack is doing AMAZING in feeding therapy. He's eating all sorts of foods, all thin to thick liquid consistency. Today in therapy he ate pudding, stage 2 baby carrots, and stage 2 baby green beans! He also sipped "pudding shake" and "green bean juice" (just his foods thinned out with water) from a cup! Last night Jack ate his pudding while I fed him some baby carrots! It's such a wonderful feeling to feed my Jack!
Last week, eating "Smarties" after inhaling his foods!
Today, drinking "green bean juice." Look at that mess!
Step 2: Jack had his annual orthopedic appointment today. He was so excited to get his hip and spine X-rays, he hung out behind reception awaiting his turn!
Jack is graduating from AFOs to SMOs!!! The new braces only wrap around the back of the foot/ankle for minimal support instead of the entire foot, ankle, and calf.
The step back: Jack has a condition of the spine called Kyphosis. He lumbar spine, or lower back, should curve inward but Jack's curves out. He had it last year but I think they thought it was the position of the spine during the xray. We always watched for scholiosis, which is very minor with Jack. So, what does that mean? He's too young for surgery. Thank goodness. A back brace should be worn to help with positioning but I don't want to do that yet and the doctor said it can wait. The kicker? Jack has to go back in 6 months instead of a year. Clinic appointments are supposed stretch out in time...
For the purpose of entertainment and I just need to vent and I don't want any sympathy...and for those that are new to the blog and everything Jack...
*Neurosurgery- arachnoid cyst and thinned Corpus Callusum observed through annual MRIs
*Neurology- possible mitochondrial disease, hypotonic CP, CoQ10 deficiency, seizures observed through clinic, EKGs, EMGs, and Muscle Biopsies
*Orthopedics- Kyphosis of the lumbar spine observed through clinic and X-ray
*Eyes- three eye muscles surgeries, one tear duct surgery because they were too narrow, eye ointment due to lack of eye lubricant, and clinic every 6 months
*Nose- tonsillectomy and adnoidectomy as well as out fracture of turbinates (broke his nose to open it up more because the nasal canal was extremely narrow).
*Mouth- uncoordinated swallow. Very high arched pallet.
*Genetics- Cardiofaciocutaneous Syndrome, BRAF mutation, Q257R
*Endocrinology- IGF-1 Deficiency, Osteopenia, history of Vitamin D2 deficiency, observed by lab work and annual clinics
*Cardiology- closed PFO (hole in heart), aortic stenosis, murmur, at risk for thickening of the heart muscle because of CFC. Observed through annual echocardiogram sand clinics
*Nephrology- hypercalcemia, at risk for kidney stones. Observed through annual renal ultrasounds and clinics
*Urology- UPJ obstruction (right ureter was shaped like a corkscrew), pyeloplasty (right kidney was cleaned out and part of the kidney was removed with laser because it was dilated too much), thickened bladder walls. Observed through annual renal ultrasounds and clinics.
*Gastroenterology- Eosinophilic Esophagitis, delayed gastric emptying, feeding tube, short and inverted duodenum, intestinal dysmotility, lots of poopy problems, cyclic vomiting syndrome, past ileus, past pseudo obstruction. Observed through lab work, X-rays, upper endoscopy, upper GI, lower GI. Many clinic appointments.
*Allergist- apparently, Jack is allergic to most foods. Dairy, egg, corn, most tree nuts, chicken, turkey, beef, brown rice, quinoa, bananas, grapes, strawberries...
*Registered Dietician- discuss all food related issues. What works. What doesn't. What he can and cannot eat. The RD works closely with GI.
* Therapy- Physical Therapy, Occupational Therapy, Speech Therapy, Feeding Therapy.
That.Is.All
