Thursday, February 3, 2011

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.


The Simmons Family said... are just too adorable..hairy back and all! I'm excited for him to come off the steroids finally. He's just going to get up and walk one day.. I just know it. It took Owen quite a while to get the confidence and he hasn't butt scooted in about a week now. He's officially a walker! I'm sure Mason does the same "old man" cute.

jacobcassie said...

Yay Mason! It's been so fun watching you grow all the way from Michigan! :)

Cassie Bradley

Kaidence's Mommy said...

I have to say that he can get away with the hairy back and arms better than Kaidence could. Walgreens carries a small hair trimmer for eye brows and stuff. We use it on Kaidence when the steroids kick in. I do her forehead, sideburns, eyebrows and 'beard or cobwebs' as my boys call it. Another heart mom bought me one, we wore it out and loved it so much we bought another. I used nair on her back(cream not wax) and naired a heart into it one time. Regardless, he is cute, happy and healthy....not much else matters. Hugs to you all!

cici said...

Steroids can do so many things, darker hair I'm sure is one of them.
When my Mom was on them no one knew that her weight gain and large cheeks were from them and they put her on a diet.:( Isn't that sad? She barely ate in the Nursing home and then they take away her favorite foods.
I can't imagine how happy he will be to be off of them. I will pray it's very soon.
His face melts my heart.

John and Suzi said...

Your little boy is so cute! I have been blog-hopping and found your website. My little guy also has HLHS and at 13 months he is doing well, but not really qualifying for the Fontan. He is on oxygen therapy, but I've heard it doesn't work all that often. Has anyone talked to you about altitude? They suggested we move to a lower elevation, but that is a HUGE change if it isn't going to improve his condition! So many things to consider :) Also, my son is set to get a G-Tube around April, have you loved it?

sheila said...

So happy to hear about all of his great milestones.. eating, learning to walk. What a cute boy!!

Melanie said...

Carlie's hair changed a little in color, too, when she was on steroids, and since she was 9, we took her in to the spa to have her forehead/eyebrows waxed because it was all growing together! We bought the nair for her neck & back, but I never ended up using it... Mason is so cute!!! We will continue praying that he gets to come off as many meds as possible asap! All the hair growth will go away once he stops the steroids... I wonder if it will change in color, too??? That will be exciting to see. But his hair is cute either color, and I'm so happy that his little personality is shining through again. I cried when I started seeing glimpses of Carlie's, which was fiery & sparkly before the meds, but turned to mellow & somber during. We're right here if you need anything in the meantime!

Kristi Vega said...

Gabriella was not on steroids for long, but she is on Cyclosporine. Her back looks just like Masons and I'm sure from the pictures I've posted you can see the facial hair is crazy on the poor girl! I don't use creams or anything yet, but I will if it ever bothers her! Anyways, her hair came in SUPER dark with the Cyclosporine! She had honey colored hair before and all her body hair was blonde like me. Now it is all her mexican coming out, dark and thick! Her arms, legs, shoulders, back, neck, face... everywhere! And she too HATES any stickers or tapes! We use that stretchy self-bonding tape for bloodwork to save the hair pulling.

Can you believe it has almost been a year for our kiddos?!?!?!?!

randalljanalee said...

Hey this is janalee Adams. My son Brennan has tetralogy of fallot. It was so nice to meet you yesterday at bliss boutique. If u would like to look at my blog it is I'm so glad to hear that mason is doing good right now. We will pray for that to continue.

randalljanalee said...

Hey this is janalee Adams. My son Brennan has tetralogy of fallot. It was so nice to meet you yesterday at bliss boutique. If u would like to look at my blog it is I'm so glad to hear that mason is doing good right now. We will pray for that to continue.

Michelle said...

Summer... I still think Mason is adorable and so happy that he is doing well. It is amazing what our little kiddos have to go through.
I continue to wish you guys the best of luck and you are always in our prayers.

Take Care,
Michelle (Madison's mom)

Lflinders said...

You do not know me, but I have followed mason's journey over the last year. What an amazing boy you have...And what an amazing mom you are. I know how hard it is to have a sick child and watch your child struggle. I can't imagine being in your situation, but know the lord has blessed you and your family with such strength. We will continue to keep mason and your family in our prayers...I can't wait to see him walking. Lacie


Summer I just wanna kiss his cute cheeks! He is so precious you can tell just by the pictures!