Celebrate! Will is 3

Ahh, my little boy is three. Toss all this Mito crap out the window. I still remember bringing Will home from the hospital, scared that I was going to screw it up, excited that we had such a beautiful perfect baby. That little guy changed my life, our lives, in so so many incredible ways. Again, minus all that Mito crap having a baby changes everything. I love when my little guy still wants to give hugs and cuddle up in my arms like a little baby.

So, add some of that Mito crap back in and I decided Will needed – ok, I NEEDED – a freaking kick butt birthday party. If this is the last one it was going to be the best one. I suppose if I keep this up next year we’ll have a Ringling Brother attend the party. That’s totally a joke, btw.

One night a few weeks ago, my sister Lisa and I were sitting around brainstorming party themes and the circus party idea was hatched. From there I just kind of went a tad over board. Not totally, but just enough.

So on Saturday we had the birthday party. We asked that in lieu of gifts to consider making a donation to Will’s Mito clinic through the Memorial Hermann Foundation. We were able to raise nearly $1,300! If anyone else would like to add to the contributions please let me know. It was really an amazing feeling to be able to give back to a group that has given us so much in such a short amount of time.

The cupcake decorating party with my mom and sisters.

The awesome banner Lisa made "Celebrate Will is 3"

So I'm totally bragging on myself here, but I made the cake.

Snocone cupcakes, popcorn cupcakes and an attempted, but dismal failure for cotton candy cupcakes which turned into sprinkles.

Getting chased by daddy in the carousel bounce house

Hanging out with Papa and Grandpa and the balloon sword of course.

Getting his face painted with an Elmo

Birthday boy blowing out his candles

Unwrapping some gifts with Carson

On Tuesday, Will’s actual birthday, we started the day with a visit to Dr. Koenig’s office. We brought donuts and money – a winning combo. Sweet Missy got Will a birthday boy balloon and he was pretty pumped about it. He also picked out some really girly stickers, but that’s ok. He had all the ladies around for his b-day.

Mito update: this might have been the first Dr. Koenig appointment that I actually didn’t cry and left feeling like I can do this. I won’t detail the previous ones, too painful. She thought Will was looking really good and that his walking had improved as well. She thought she might have noticed an increase in what I’d call fidgeting but medically is known as chorea. It’s non-stop movement. So, we just need to watch out for that.

We’re also going to get his eyes checked. With all the things he knows and can pull from memory, he doesn’t know any of his colors. He can do some counting, animal noise associations and he can tell you everyone’s lunch box at school and places he’s been, but no colors. That’s just weird to me. So, we talked about him possibly being color blind etc. Not a crisis here as I don’t care if he knows his colors or not, but I’d like to understand why everything is blue, according to Will.

So, back to his birthday. Dropped him off at school where he had cupcakes as a special snack. His teacher snapped a few pictures and sent them to me!

Neil picked Will up and we all went to dinner at a local favorite, then we stopped by Fire Station #6 as a big surprise for Will. He LOVED it. He started crying when we left and wouldn’t even tell the firemen thank you because he was so mad (and tired) to go home.

His little boots wouldn't even fit in the fireman's big boots!

But the heavy coat worked out along with his birthday boy crown from school.

After the fire station we came home to Papa on the front porch so that was a big surprise for Will too. They listened to music in my dad’s car – a huge favorite for Will. After he left we sang happy birthday, had a cupcake took a bath and went to bed.

All our pictures from the birthday party and fire station visit are posted here.

Will has been coughing on and off since he went to sleep. I’m really REALLY hoping that this cough/congestion stuff makes a quick departure. He’s almost back to baseline from his March hospitalization and he really needs a chance to catch back up.

Happy Birthday Baby Bear. Mommy and Daddy love you forever and ever and always. We're so proud and honored to be your parents. Thank you for the gift of you.

Health update

We are set for ear tubes surgery on Thursday, April 5. Unless something goes seriously wrong between now and then. It's just a day surgery and he will be put under anesthesia. The last time he did great, minus his first and only a$$-plotion of poop before the surgery.

The BMs continue as well! TMI and don't read it if you're grossed out by poop, but he literally had three feet of poop on Saturday.

It seems like Will really turned the corner recently. After a month or two of green snot, it's all cleared up, his BMs are on the serious uptick and his gait is getting better. The weight belt really seems to help give him more balance so we've been trying to wear that more at home too.

Let's hope and pray for a good health streak. The next two months will bring many changes for therapy. Our ECI services will end on his 3rd birthday (April 24) so I'm exploring new options. If anyone has suggestions happy to have them. We're looking for PT home health services and aquatic therapy. Right now, I've got us on the wait list at the Care Group of Texas for both.

We go in on Tuesday for 3 month labs for the EPI-743 trial and a hearing test. We have to do a hearing test before the ear tubes and then again after.

"Foot ball player" - Bike helmet, winter gloves, PJ shirt and of course, the football.

Tackling mom!

Tis the season for snot

This is a jumbled mess, but just some random health / Will updates.

Snot. It made an appearance last week and I have kicked it's butt. Knock on wood.... Last Monday Will woke up with "ear snot" coming out of his right ear tube. I just decided to just show up at the pedi's office when they opened and politely tell them that they needed to look at this kid RIGHT NOW or he will have to go to the hospital. A tad dramatic, but it worked.

Diagnosis: Right ear infection. His left ear was a little red, but not inflamed or infected. So we started on ear drops for his right ear and meds to clear it all up. He might have had a sinus infection too because I noticed his snot went from green to clear after starting the antibiotics.

So far so good. Have I mentioned how much Will hates Nose Frida now? I still use it and it does the job. It's gross, but it keeps him less snotty and that's a good thing for everyone. He also hates the antibiotics he is on so that's a fun fight twice a day. I save it till the end of all his medicine so he isn't mad the whole time he's sitting there while I shove multiple syringes down his throat and drops in his ear.

Potty training. Continues to continue as do the accidents. I think he sometimes just has a hard time when his energy level is low. Can't get every part of his body to do what he wants. This weekend he did awesome thought! Only 1 or 2 accidents and he even managed to do a couple of BM's on the potty! He'll get it, might just take us a bit. Meanwhile, I'm washing clothes like I've never washed before.

Therapy continues to go well as does chewing. We all are getting a little braver in this new world of chewing.

Send a couple of prayers to the big guy upstairs that Will has a healthy winter. It's scary to think that one little fever or virus could send him straight to the hospital again and that he might not recover well. Meanwhile, we'll keep pulling out the hand sanitizer, taking meds and vitamins and keeping germs at bay as much as possible.

Our kitchen counter - just kidding!

The other day he did something I've not really seen him do before, he conspired. :-) I went out to load the car for the morning and he and Neil were in the entry way hanging out. He started to hide behind the door and then yelled BOO right as I walked in. It's awesome to see him getting to that next level of awareness and thought processing.