7 Quick Takes Friday.....Officially Overwhelmed

Well, it is official...

Larsen's Syndrome sucks.

Let me tell you about our week of medical stuff with our dear little Henry...

1) On Monday, we went to see an awesome chiropractor/naturopath who has helped myself, my son with major allergies, and many members of my family of birth deal with health problems that conventional medicine did not seem able to solve. We have a four point plan that will probably take several weeks to implement, but it should help to heal Henry's gut, help him to get more calcium in his bones, and finally to digest protein a bit better.

2) On Tuesday we headed to the Nutrition Assessment Clinic at Children's Hospital...because I am not going to completely abandon conventional medicine...which is indeed very good at testing and diagnoses...the main doctor recommended a full blood panel to check for most vitamin/mineral deficiencies (we do already know he is deficient in iron and calcium) and for metabolic disorders and we were also referred to a specialist in "joint displacement" to help us figure out what Henry's growth potential might be...

3) After the doc we saw a speech pathologist who confirmed that Henry is indeed seriously orally averse and recommends therapy both BEFORE and AFTER his cleft palate surgery in February, and gave us a referral to the gal most experienced with cleft palate children...we also need to go for a swallow test (to make sure he does not have a fistula or silent reflux)....

4) THEN the Nutritionist came into the room...even with a concentrated partially digested protein formula it appears that Henry might not be taking in enough calories since he is so active and the back brace makes him work harder to breathe (thus burning more calories)...so we are SUPER SUPER concentrating his formula and will see how that works...oh, and prayers please that our insurance decides to cover the cost of this formula since the monthly tab for just Henry is about half of my monthly grocery bill for the other 8 people in the family!!!!

5) On Thursday we went for a hearing screening since children with cleft palates or Larsen's Syndrome can have hearing problems....yep, abnormal results in BOTH EARS...could be as simple as he needs tubes put in his ears during the cleft repair surgery or it could be he has a congenital hearing loss...we have a referral to a ENT doc for next week...

6) Our fabulous OT made contact with another therapist who had treated a child with Larsen's who heard about a spinal surgery technique called the VEPTR procedure which is very successful treating severe scoliosis AND lordosis AND kyphosis of the spine (yep, my little sweetie has all 3 kinds of twisting you can have)....and I found the doctor who invented the procedure AND his office contact information in Pennsylvania!! We will be getting a call to evaluate Henry's potential for this specialized kind of surgery! The
internet is just amazing....

7) So since you are probably as overwhelmed and completely tired of all this medical stuff as I am, I will leave you with the reason I am so blessed to be dealing with all of the above...

For God sets the lonely in families....He does not forget the orphan....Henry is home in the arms of a loving family, where he....where EVERY CHILD....belongs.

Merry Christmas!