38 months & Steroids

On January 3oth Mason turned 38 months!

He is my Hero!

He has fought for his life each one of those months!

At 38 months:

Mason is finally warming up to his therapists that come out to our house . He has Physical therapy 1 x per week, Occupational therapy (for fine motor skills) 2 x per month, Speech 2x per month, and his preschool teacher visits 1 x per week. I am truly grateful for this home hospital program he qualifies for, because he is too immune compromised to attend preschool or therapy!

Mason's legs are getting stronger and his confidence is building....... thus soon he should be walking!! One of his issues I think is his 'steroid body' - skinny little legs and a very chubby tummy. He is quite top heavy! Though after many months of trying he will finally let two of us walk with him. One of us on each side of him holding his hands. He will take 10 to 15 steps. That's huge for our Miracle Mason!!!

His talking is coming along well also. His sentences are only about 3 sentences long and sometime only I can understand him, but it works for now. I've also taught Mason sign language since he was 1 year old, but now that he thinks everyone can understand 'Mason language' he doesn't use his signs as much. We still watch 'Signing Time' DVD's a lot because I believe they help with oral language too. (They help Ammon's speech too, so it's double duty if I get them both watching!)

Mason's fine motor skills are already pretty good, but is great to learn with him the different activities he would be doing if he were attending preschool right now.

On January 3oth, Mason also finally finished his steroid taper from the large doses he received during his last hospital stay. I'm so glad he is back down to his normal dose 2x a day, but am certainly anxious for him to come completely off of them. Steroids are a medical wonder drug because they can do many great things...........but along with that comes some nasty side effects. Our hope is to come off in April after Mason's ONE YEAR post transplant check up, catheter and biopsy at Stanford. When he comes off steroids he will also get to come off of his anti-viral med (Valcyte), his anti-bacterial (Bactrim), eventually off of his 3 blood pressure meds (Verampimil, Valsartan, and a Clonidine patch), and his 2 anti-acids. He takes all of those because of being on steroids. He will still take at least 2 meds for life. Those are his anti-rejection meds.

There was one good side effect that came out of the large burst of steroids......... an APPETITE. Yes really! Look who's eating......

BBQ potato chips

Mason would eat chips breakfast, lunch, and dinner if he could!

(Okay, shhhh sometimes he does, but at least he's eating.)

A Bowl of Cereal

Just like the big kids.

Some of the other things he's eating are: fruit leather strips ,

(The ones from Costco. He loves them!), string cheese, yogurt

gold fish crackers, apples, eggs, shredded chicken, pasta, and pizza

Even though he doesn't do well on dairy based formulas, he seems

to do fine with cheeses and yogurt. He's not quite eating enough

calories though to survive on yet. I still supplement with G-tube

feeds at nap time and bed time. But hey, it is a great start back

to surviving without his GT button. Although as nasty as all his

meds taste, I am very very grateful for Mason's GT button!

Another side affect of steroids (as well as Cyclosporine- one of his anti rejection meds) is growing lots and lots of hair...........

All those thick curls are cute on his head, but.......

on the rest of his body........ not so much!

I hope to switch to Prograf (instread of Cyclosporine) when he

goes off steroids so he can lose some of his extra hair. I think

I've mentioned this before, but Stanford's team doesn't like to

put their transplant patients on Prograf (which does not cause

the extra hair growth) while they are still on steroids. Sometimes

combining them together can cause blood sugar issues. Poor little

Mason hates bandaids, EKG stickers, or the dressing around his

port when he is accessed for IV use because he knows it hurts

to take them off.......all that darn hair!!

Okay and another secret,

Mason grows hair across his whole forehead and he gets a big

uni-brow, but I either use "gentle facial Nair" or we shave him

with hair clippers. His chubby cheeks already draw enough

attention that I don't think he needs all that extra facial hair too!

One more thing.......his hair used to be curly and BLOND! Has

anyone ever seen steroids or Cyclosporine change hair color too??

The most obvious side effect are Mason's rosy chubby cheeks:

Look at Those Cheeks

( And definitely not a side affect: sleepiness! This is a rare occasion!

After that big burst of steroids it got even worse. He wakes like

he's having nightmares several times a night and screams for up to an

hour each time. But I will say this week that has started to lessen back

closer to his normal steroid sleeplessness.....which still isn't great!)

More Cute Cheeks

Steroids can also make you very irritable and grumpy!! Which is Mason a lot :( But, towards the end of the steroid taper over the weekend we began to see some smiles and playfulness. Mason pulled out muffin tins from my baking drawer, sat on them, and scooted around the kitchen, just like old times. Oh, how he was laughing!!! I can't wait 'till he's off of the 'wonderful but awful' steroids to have Mason happy ALL THE TIME....... or at least more often :-)

Miracle Mason, Our Little Scooter Boy

Tomorrow, February 4th, will be 9 months since Mason received his Angel Heart!! Has it really been 9 months? Were Mason and I really away from our family for 5 months? It is so hard to believe that is all in our past now!!

Today I am so grateful, as I am every day, for Mason's donor family and the sacrifice they made to give my baby another chance at life. I am grateful to my Father Above and His Son who've made IT ALL possible.