As per usual, it's been a busy month, but this one has been a bit busier than normal. Uncle C graduated, Mimi and Pop-Pop visited, Purple Week, we finished a year in the clinical trial, Little Buddy finished kindergarten, Little Buddy got his first set of hearing aids, and, oh yeah, LITTLE BUDDY TURNED SIX! How is a Momma to cope?!!?
Congrats, Uncle C!
This was the best family picture of all of us we could hope for, lol.
Besides all of the craziness of the month, we also try to take time just be a normal family some days and to soak it all in.
Tractor rides with Daddy.
It's just ridiculous how handsome he is.
Smiling in his flag shirt for Memorial Day.
Bedtime stories as a family.
However, it's hard to forget that our "normal" family activities still include biweekly trips to Minnesota.
Getting cozy at the hotel.
Enjoying the playground at the hospital after his infusion. Then time to head home!
Or that our "normal" family now includes hearing aids. Let me tell you how excited I am about trying to keep track of them. Ay yi yi!
Excited by his new hearing aids and the Jason's Deli ice cream that we got to celebrate them!
But overall, this was an emotional past month for me. HIs birthday coincides with the end of the school year and the anniversary of his clinical trial. Too many things that remind me that time gets marching on and that I don't know how much time with him I'll get. So I just focus on making the most of what we have.
Someone earned the biggest heart award at school. Excuse me while I go cry over here in the corner.
Last Day as a Kindergartner. *SOB*
We celebrated his birthday a week early because of our upcoming travels in June. It was Paw Patrol themed, no surprise there. :)
Decor is ready to go!
The birthday boy!
Checking everything out!
Pizza time!
So lovely to have so many people whom love our boy come to celebrate him!
I wanted the family shot. The kids just wanted cake!
We love you, Little Buddy!
Cake, ice cream, and friendship? What more could anyone want?
Ok, ok, Little Sister stuck in a box is pretty funny. I'll give you that.
Last official pictures of a five year old...
...and first official pictures of a six year old!
We were excited that we were actually home for Little Buddy's actual birthday. We had just come in from Minnesota the day before and we were leaving for California the day after, but today we were home and we spent it together. Little Buddy asked for dinosaurs, so to the Natural History Museum we went!
Checking out the dinosaurs with Daddy!
Riding the caterpillar with Little Sister in the Butterfly House!
Cake time once we got home!
Celebrating the end of the day by reading one of his new birthday books. A great way to end the day!
Our other birthday tradition is to get family pictures near both the kids birthdays by the amazing Ms. J. She captures Little Buddy's spirit like no one else can, and this shoot was no exception. We will always treasure these memories and moments.
The running pictures are my favorite. All that joy and energy. I don't know what the future holds, but I know that our boy is LOVED and loved dearly.
Height and Weight
He was 4'2'' in (50 in!) and 62 lbs at his genetics check up. Can't believe how tall he is! Still maxing out all the growth charts.
Personality
Very happy unless he is tired! Which is a lot right now because of the traveling. Looking forward to being more even-keeled once we settle into the summer next month.
Developmental Changes
I still have the same feelings as last month and look forward to being with him during the summer and helping him re-hone some of his skills. It honestly doesn't seem like he is losing skills, but rather losing the attention and focus needed to perform these skills. As I prepared for his year anniversary visit for the clinical trial, I wrote down all the changes I had seen from June last year to now. It's hard. He won't do thumbs up or fist bumps or show us his muscles anymore. He can't point out his body parts when asked anymore or wave good-bye. He can't dip chips into guacamole, hummus, or salsa anymore; instead tries to pick them up with his fingers. That hurts me, because he used to love dipping foods. It hurts nearly as much as his inability to paint or hit the ball off the tee or kick his soccer ball in a goal (that does hurt a lot since the soccer goal was his gift last year for his birthday because he enjoyed kicking the ball so much). He can't blow the candles out on his cake. :(
But we press on and are thankful for what he can do. And who knows? He just started the increased dosage of the drug so who know what can happen? We will just continue to work to give him the best chances and the best life possible.
Fun Tidbits
We head for California TOMORROW for our West Coast vacation! It's going to be a crazy trip, but we are excited. First up? Seeing our dear friends, the D family, and going to DISNEYLAND (if you could have told me two years ago that we would have done both Disney Parks in one year, I would have told you that you were NUTS)! Send us happy travel thoughts!
Good night,
LBM
Little Buddy's Momma
No comments:
Post a Comment