Friday, December 23, 2011

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) 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!


  1. That is one lucky little boy!! Where in PA will you be traveling? If it's far east enough I'll come meet you!

  2. You are one special mama! Praying for your little Henry and all your other beautiful kids!

  3. Praying for Henry and you all. Merry Christmas!

  4. Praying for your little much for one little guy, but so glad he has all of you. Merry Christmas, friend, sending love your way.

  5. praying for your little one and empathizing with all the appointments. (mine isn't quite as complicated as yours but he's a full-time job.)

  6. What a beautiful family photo. I hope the new year brings lots of healing for little Henry!

  7. Praying for you guys tonight at Christmas Eve Mass! Merry Christmas to you and your beautiful family!!!!

  8. Gosh, you're an awesome mom and Henry is so lucky to have you. I'm sure you feel just as blessed to have him...he's ADORABLE!!! Praying for you as you navigate all of these twists and turns with him.

  9. Carla,
    Been following your story for awhile now...just wanted to let you know we'll be praying for your family and for Henry...sounds like quite a bit to deal with- we know that God will give you the grace to deal with all that glad to see that Henry had you all to help him with all he needs.
    - Kimberly

  10. I have just found your blog, and can't believe the journey you are on with Henry. It takes an amazing mom and dad and siblings to care for a boy as special as him. You are an inspiration!!!

  11. Hey Carla, I wanted you to everytime I eat a fry now, I think of Henry. What kind of formula is Henry on? Happy New Year and God bless.

  12. Henry is on super-concentrated Alimentum at the moment... it is the only thing his little system can handle...


  13. Hang in there. You'll figure it out! In a few months things shouldn't be so overwhelming... I hope. Blessings. You are doing amazing things for Henry!