Tuesday, March 25, 2014

+2786 Days Post BMT - David is doing great!

David will be 10 yrs old on June 7th!  He still has ongoing health issues which I'll outline here:

Petechiae:  He still has petechiae (tiny pin point blood spots) but his platelets are normal.  The doctors have no explanation.

VSD:  He still has a VSD (Ventricular Septal Defect) hole in his heart.  It's about 2mm.  As his heart grows, the hole becomes smaller in relation to the heart size.  He saw the cardiologist on  3/18/14 and he did not do an echocardiogram.  He said there is nothing to worry about.  The size of the VSD will not affect his growth.

Skin GVHD:  His skin GVHD still flares up when he's in the sun.  It's been 2 yrs since his skin GVHD resolved but we still have to take precautions like sun screen, sun hats, and shade.  If he has a flare up, we use Hydrocortisone 2.5% topical ointment and that seems to work well.

IGF3 Binding Protein -  4.4 - normal
IGF1 Insulin-like Growth FActor - 130 - normal
Celiac Disease Panel - TTG IgA Antibody - 1.2 - normal
                           - Deamidated liadin ABS, IGA - 2.2 - normal
                           - Immunoglobulin A (IgA) - 464 - HIGH - not sure why, Dr. Suchet has not responded.

He's still on 50mcg o Levothyroxine for Hashimoto's Thyroiditis.
T4FREE - 1.06 - normal
TSH - 1.24 - normal

59 lbs

Blood Pressure:
98/63 - very stable

3 feet, 3 inches on 3/18/12 - Since October 2012 he's grown 3.8 inches.  His growth has slowed down but he's still trending upward.  He's still not on the average growth chart.  There are no signs of puberty which means his growth plates should still be open, giving him more time to grow.  We HOPE his growth plates will stay open until he's about 14 yrs old.  If that is the case, he's estimated to be 5'8" tall.  If they close earlier than 14 yrs old, est. height is 5'5".

I'm so proud of my son!  He's had a great school year!  He's reading now.  He enjoys science and PE too.  He likes to be read to, so we've read several chapter books to him this year.  Mountain Born by Elizabeth Yates, Henry Huggins by Beverly Cleary, The Year of Miss Agnes by Kirkpatrick Hill, Mrs. Piggle-Wiggle by Betty MacDonald, Owls in the Family by Farley Mowat, and Homer Price by Robert McCloskey.  Right now, we are reading The Wheel on the School.  

He really likes https://diy.org/ and is working on several badges.

Here are a few photos of our recent trips:

IRELAND - March 2014

Departing Ireland

Ballyquinn Beach, Ireland 
Ballyquinn Beach, Ireland

Blarney Castle

Blarney Castle

Blarney Castle

Blarney Castle

Rock of Cashel

David likes to color and do activity books

Catching air while he can while the train was empty.

National Maritime Museum in Dun Laoghaire, Ireland

National Maritime Museum in Dun Laoghaire, Ireland

SCOTLAND - October 2013


Anonymous said...

Hi Aimee,

Thanks for the update. It's great to see David's pictures. he has such a sweet, innocent, yet mischievous smile and face. Could just reach out and give this kiddo a big hug.

Great to hear of the normal labs and growth. Hope, that with time, that the pesky issues he is dealing with also resolve and David can lead a completely nomral life. Keep that growth going, David!

David has come so far, Aimee and is a testimony to the loving care you are providing. Whenever I see a child with WAS going through a lot, especially with GvHD, I think of David and know that they too can thrive. Thank you for providing that hope for our families.

Take good care.



Anonymous said...

Absolutely inspirational Aimee, thank you for updating. Great labs and he looks wonderful.
Sue xxx

Anonymous said...


What joy to brings to my heart to see David's miraculous progress - and to experience your spiritual, positive attitude and approach to the entire WAS event!

Anonymous said...

Hi Amy
It's been awhile since I've visited your blog and its nice to catch up on how your son is doing. I can see a lot of growth and change in your son since the last time I was here and I am happy for you and your family! I am actually learning quite a bit from your writings and I appreciate it, thank you! Take care and I will try and stop by here a little more to stay up on your son and your family's journey!
Greg E.