Monday, June 15, 2015

+3233 He is 11 yrs old now!

He's had a pretty good 2015 so far!  He had a couple of episodes of throwing up but nothing out of the ordinary.  He's had a normal cold.

In June he turned 11 yrs old!  We are so grateful for every day that we have with him.  Every day is a blessing!

In April, we traveled to France, Greece and Scandinavia.  We thought about getting a flu shot for him since he's had no vaccinations yet but the doctor had no inventory.  So, we decided to give him a Hepatitis A vaccination since we were travelling and hepatitis can be acquired through food service and other places.  It also is the one vaccination with the least amount of side effects.  Well, guess what? He had a side effect: two days later he had a bad headache and a rash, like a raccoon, around his eyes.  It's hard to treat a rash that goes around the eyes.

Here are some photos of our trip:

















Sunday, December 14, 2014

+3050 Gut Health and Brain Health

Ah, too bad!  I missed day +3000!  Oh, well!


I wish that we had someone who was more proactive with the over-all long-term health of our WAS boys.  Like, not just their breathing and skin health, but their gut health.  WAS boys take so many medications, their gut has to be compromised to some extent, even when they stop the medications. I've been learning more about leaky gut, behavior, and healthy brains as applied to just normal people like you and I. When I think of the benefits of fermented foods, no sugar, and building up good bacteria, it would help our WAS boys so much more if they had a whole food diet. It could extend their years, and if they are struggling in school, it could help them improve. 

I know it's hard, but it's never too late to try.  If you are a parent, here are some suggestions if you are willing to give them a try. I'm not trying to sell anything. I'm just a concerned mom, trying to do something very hard. It appears my son is doing well, but I have no clue what those thousands of doses of meds and chemo has done to his long-term health. 

Here is an article that helps explain my thoughts and what science is discovering between gut health and brain health. I hope it's helpful.

Sunday, August 03, 2014

+2917 Arm Rash and Happy 8th BMT Anniversary!

While traveling in the Pacific Northwest on vacation.  David came down with this rash on his left arm on Monday, July 28, and it's gotten worse.  It's swollen now too, and hurts to the touch.  It's not the wounds that hurt but inside where the swelling is.  The right arm has some rash too but is not swollen and not as red.  His eye lids are affected and the GVHD rash is popping out on his forehead and neck.  The eyes, forehead and neck do not itch, but the arms itch a lot.

He's had similar reactions to mosquito bites on his back before.  

We've been swimming in the Pacific Ocean at Rockaway Beach (in a full body wet suit), and swimming in the Salmon River in Mt. Hood area.  

It looks like poison oak but he said he was not playing in poison oak.  Also the way it's spreading is looking more like a GVHD flareup.

He has been wrestling with Jonathan on the grass at our vacation rental - like every day, several times/day, wearing short sleeve shirts.

His sun exposure has been minimal and if he's in the sun, we are using sunscreen and sun hats.

I took him to Urgent Care because I did not bring the hydrocortisone ointment.  The doctor prescribed the 2.5% and said to take Benydryl.  We've done that for Friday (8/1) and Saturday (8/2).  I don't have the special cream for the face, so I'm using hydrocortisone on the face.  His eyes and the rash on the face do look improved, but the left arm is not improved and hurt/swollen/itchy today.  The rash keeps moving upward, towards his bicep.  

August 1 was his eight year BMT anniversary!


Tuesday, July 08, 2014

+2891 4th of July 2014

Besides David getting a few headaches (tiredness and dehydration), we had a fantastic 4th of July this year!

Lympnode in June:  His right neck, directly under his ear, hurt a lot.  I took him to the chiropractor and she suggested he was fighting something because the lympnodes in his armpit and his right side chest also hurt.  He got over it in about 2 weeks and is doing great now.  He had no other symptoms - no fever, no rash, no extra petichiae.    Whew!

They sold 5 gallons of lemonade and 44 cookies at the parade.
A portion of the increase went to LifeNets.

Sunday, March 30, 2014

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.

Growth:  
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.

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

Weight:
59 lbs

Blood Pressure:
98/63 - very stable

Height:
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".

Development:
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
TRIP TO DISNEYLAND and SOUTHERN CALIFORNIA - Dec 2013


SCOTLAND - October 2013







Thursday, October 25, 2012

+2270 Thyroid, Growth Hormone, Cortisol

Great news today!

Thyroid Normal (with meds):  David's recent blood test for Free T4 (1.16) and TSH (1.75) have been in normal range for 1-1/2 years.  No changes needed to his thyroid meds.  The endocrinologist said that most post BMT patients with thyroid disorders will continue to take the meds until they stop growing.  5% of patients recover normal thyroid function and can come off the meds around age 18.

Growth Hormone Normal (no meds):
IGF1 - Insulin-like Growth Factor 1 was normal (106)
IGF Binding Factor was normal (3.6).

Height:  1.09 meters or 3 feet 7 inches
Weight:  22.09 kg or 48lbs, 11oz - slightly below average for an 8 yr old
Blood Pressure: 93/61

Growth (not normal):  He is still below the 5th percentile.  He needs to grow 4 inches in the next 8 months to get on the chart.  We know by his wrist scan that he is 2 years behind and may reach full height by age 20, not 18 like a typical male.  

Cortisol post stim (normal):  His level is normal (26).  Now we know that if he experiences a stressful situation (broken leg, car accident, major sickness) that his adrenal glands will produce normal levels of cortisol and he should have a normal response.

His doctor said: "David's cortisol response is excellent well > 20. No sign of cortisol deficiency. His growth hormone levels are stable within normal range.  No medical intervention is needed at this time but I really would like to monitor his height rate and see him back in clinic in April 2013. We may repeat his thyroid tests at the time of the visit as we may check other labs then too. "

He is good to go for now!

Tuesday, October 16, 2012

+2261 David is doing great!

Time flies by so quickly!  Since my last post, David has been doing fantastic.  Here are some highlights:

1.  Eye pressure is resolved so not more eye doctors.
2.  Thyroid function is still an issue so he's on Levothyroxine daily.
3.  Occasionally his skin will get a dry or flared up spot and we have to use topical steroids.
4.  He's still sun sensitive so we have to keep him fully covered.

Fun and exciting adventures:

1.  In May we went to Hawaii.
2.  June was the start of his first Tai Kwon Do class.
3.  July took us to southern California to visit the cousins and go to Disneyland.
4.  The most exciting milestone was dropping him off at church camp for 3 days!
5.  Between March - July, we went on many hikes.
6.  In September, we went camping with our homeschool group.
7.  Then, in October we went to New Zealand.  The following photos were taken in New Zealand

The Stone House park in Kerikeri

A playground in Paihaia

The Bird Place in Kerikeri


Maori cultural performance in Paihai

The beautiful children's choir

On board a steam boat!

The Agradome in Rotorua













The Weta Caves

Bag End at Hobbiton

There is a rainbow at the airport before departure.