Monday, May 12, 2014

April Showers bring May Flowers

Well Jax its mid-May already.  I can't believe that spring is flying by!  We've had so many adventures over the last 6 weeks since I last wrote.

Lets start with our BIG blessings!
First, the members of Daddy's Volunteer Firehouse got together and purchased a ZipZac I wheelchair for you.  It is incredible (almost as incredible as them!).  You were so great on it right away.  You figured out how to go forward and backward within 15 mins.  Last week you discovered how to climb into it all by yourself.  We are so proud and know it will help you preserve your precious energy as well as help you zip around the house as any almost 2 year old should. 

Then a few weeks later, we took a trip to DISNEY!  It was a total surprise for you and your siblings.  As you know, momma's daddy passed away in September of this year.  Before he passed, he told us that he wanted to send us on a vacation as a family.  Pop knew that we needed it. I didn't realize how much he was right.  (But that's just like Pop, always having to prove to momma that he was right
 ;-O I guess that's where you and I get it from!)  I know he was blessed watching us from heaven. You had a great time.  You really enjoyed the pool and watching the shows.

Now we have this benefit for you coming up this weekend.  I can't believe all the people working so hard to bring it to fruition.  It's amazing and its all for you!  Its going to be so great to see all our friends.

Now onto the other blessings & prayer requests

We've added several new doctors to your team.  3 specifically - an endocrinologist (this one is going to commit to your case), a metabolic genetic specialist (who has so many letters after her name, you could spell several scrabble words) & a cardiologist.  The management of your team is becoming more difficult because there are sooo many specialties involved.  You currently see - a diagnostician (she manages EVERYONE), a surgeon, a nutritionist, TWO GI drs, allergy, pulmonology,  ENT, endocrinologist, TWO neurologists, neuro-muscular geneticist, metabolic geneticist, retinal eye specialist AND cardiologist. That's around 15 doctors that we have to see on average every 3 months (some more, some less).  I'm sure I'm forgetting some.  Dr. Hogan is pretty amazing at keeping them all in line though.  She doesn't let anyone try anything without putting it past her first.  
Speaking of drs and visits......we got that long awaited genetic test back.  Well.....Nothing, nada, zip, zero, zilch.  Yep all that blood.  But we knew that was a huge possibility.  Only 1 in 3 people receive information. This whole gene sequencing test is SOOOO new.  The doctors aren't even sure how to properly process the data.  They (CHOP drs) requested your ENTIRE 6000 gene sequence back and are going to re-read it. Your doctors didn't like the way Baylor presented the again we wait.  On the upside though, the information is valid for 10 years and any new finds/discoveries will be put up against your data, so the answer may still be out there.  So apparently this is a lesson in patience.  But they did add our entire family to 2 research studies!  Fun times....we're all lab rats! haha  Oh and now (finally) ALL the doctors think this is genetic/metabolic. So being as that they only know how to read 25% of the genes, hopefully science will quickly move along so they can figure out how to read the other 75%. ;-P

Since we are on the topic of doctors not knowing things.... I would really like them to figure out FPIES! You've had several FPIES reactions this month.  One was to the TAIL of a GOLDFISH CRACKER. Seriously?!?!  I'm a pretty clean momma, but there are 4 of you and food does manage to get into places it shouldn't.  But I would appreciate it if you weren't so "typical" and didn't try to eat crumbs on the floor. OK?  Thanks!  You also managed to grab a peanut butter granola bar out of Callie's backpack. You just about gave momma a heart attack!  When you have an FPIES reaction, you throw up, retch, have bloody stools and get dehydrated.  Several times you've become lethargic.  Usually kids have to be rushed to the hospital with FPIES, but because momma is a walking hospital, (J/K, but its what I feel like sometimes) you usually get to stay home.  Honestly its because you are fed via g-tube and I can run hydration & sugar through your gtube.  So now we've established that you are allergic to apples, pears, chocolate, fish, wheat, soy, milk, peas, green beans, blueberries, corn & carrots.  You CAN have bananas, mangos, coconut & grapes.  I'm thinking we move to the tropics!   I just want to be able to feed you.  Even at 2,500 calories a day, you are still so hungry!  I wish I knew what to give you quell your appetite.  Its one of the hardest things in this journey. You will eat until you make your belly huge.  You will have to be vented and will retch, then 15 mins later ask for more Elecare pudding, formula and snacks.  The ironic thing is that all this food doesn't make you grow.  It doesn't make you go the bathroom more than 1x every 8-10 days.  It leaves you in pain, and completely unsatisfied.  Some of the doctors were pleased about your 6 ounce weight gain this month.  (I was ecstatic - daddy was more in line with the drs).  We just pray it sticks around and you grow! 

Photo: First bike ride!Lets go back to the blessings.  I like those so much better :-)  You are signing SO WELL!  I love watching you talk with your hands (and listening to your sweet little babbles, but those sounds I don't understand). You are pulling up to stand and starting to cruise around furniture.  You went on your first bike ride on Mother's Day!  It was awesome.  You could hear your giggle all through the park.  I love watching you and seeing you explore new things and experiences.  We all do!  Callie was overjoyed watching you, watch an ant craw on your foot.  You bring so much joy into our lives.  You remind us to slow down and find the joy in simple.  A smile, a giggle or a new learned sound can make this busy-stressed-out momma stop in her tracks and remember why she wanted to be a momma in the first place.  I love you, as well as Callie, Zachary & Nathan.  You are my special blessings.  

Love Always xoxo,



1 comment:

  1. YEAH Jax (and Momma) for doing so well. I may be as frustrated as you with the genetic testing as we are waiting for ours. I guess I won't get my hopes up for answers. Keep up the good work (ALL of you) and keep posting. I will share his journey as the world deserves to know about this amazing little boy!