The last month of summer! How did we get here already? And why does it feel like I am only NOW getting a handle on our schedule and routine? Oh well. I'll take what successes I can get before I have to make an entirely new schedule and routine once school starts at the end of the month!
But, for now, I feel like I can safely say we've been nailing our routine. Park time (when it's cool enough), Boot Camp (which saves Momma's sanity), and My Gym keep us busy during the week. The weekends are spent out on the lake as a family.
Someone loves slides!
Enjoying some lunch at Jason's Deli...
...Little Sweetie even got put to work!
Hooray for Boot Camp!
He has been so excited to do My Gym again this summer!
Time to go on the boat! He's been loving riding in the tube!
We keep our traveling hats on and continue our trips to Minnesota. I don't take these trips for granted. Of our two this past month, we got to see our friends in the Type A trial at the first but by the time of the second, the Type A Enzyme Replacement Trial was cancelled. It makes me sick for our friends and anxious about Little Buddy. We know exactly how lucky we are to have this opportunity.
Excited to see friends this trip!
Sanfilippo playtime!
These children are in our heart and the these families are our family.
Enjoying his breakfast!
Excited that the music therapy program was reinstated!
Love this face!
A quick field trip to Fort Snelling before heading to the airport. It was nice to walk around for a little bit outside and Little Buddy though the cannon demonstration was pretty neat!
He was happy to go back for our next visit but it broke my heart when he was looking for our friends. :(
Um, Little Buddy put on a sock. Inside out, yes, but BY HIMSELF. He's never been able to do that and, while this might just be a fluke, I wanted to document it. So proud of him!
Tired boy after a long hospital day. But we did manage to take a picture next to the National MPS Society donor plaque, which meant a lot because the annual family conference was going on in Ohio this week. We had wanted to go but obviously treatment came first. Hope to go next year and connect with more families!
We also filled our time with special summer activities, like swim classes, time with Ms. A before she went back to college, and cheering for our babysitter Ms. K as she dove in the Olympics!
Sister and Brother cheering each other on during swimming lessons at Ms. J. Momma and Daddy were very proud of how well each of them did!
Oh Ms. A! We are going to miss you so much when you go back to college!
Trying to get these two to smile together for a good luck picture for Ms. K was an Olympic level challenge within itself!
We found Ms. K during the Opening Ceremonies! Go USA!
Ms. K made it to the semifinals! We are so proud of her for how well she represented our country!
Another very exciting event is coming up: Next month, a group of people are going to climb Mt. Rainier to help raise Sanfilippo awareness! They had a flag for families to sign at the conference (we were able to WILLPower on there!) that they will take with them to the summit. Such a cool way to raise the profile of this disease! Little Buddy is shown here modeling the Rally on Rainier hat that they so kindly sent him (along with his awesome "Making History" shirt).
We'll do everything we can to save you and improve your quality of life, little man. We promise.
Hard to believe that summer is coming to an end. We went school shoes shopping, so that made the looming school year seem so much more real. While I will enjoy having some down time again while Little Sweetie naps and Little Buddy is at school, I am going to miss him. I hate every second I am not with him.
New shoes for FIRST Grade. Excuse me while I go cry in the corner!
As long as I can kiss this smiling face every night before he goes to bed, I feel blessed.
Height and Weight
Consistent again at 50 in. and 60 lbs.
Personality
Very happy and silly. Lots of giggles!
Developmental Changes
Still working on maintaining skills as much as we can. Sometimes this involves new equipment. We've started using ankle weights and a weighted vest with him in the afternoons if he's extremely hyperactive. It helps him build strength while he plays and it slows him down a bit from the speedy running he attempts to do through the house!
Just watching some Mickey while I passively pump some iron.
Fun Tidbits
Sometimes they love each other. And sometimes, they show it. And those are the times my heart bursts,
Special siblings.
Good night,
LBM
Little Buddy's Momma
