Another busy month in the WILLPower household! Travel, races, visitors, and more, March was fun but a little crazy!
As soon as Momma and Daddy returned from Hawaii, Daddy and Little Buddy jetted off to Minnesota for another treatment trip. We are a little nervous as the biopharmaceutical company behind the trial has recently made statements to make us concerned that they will not continue the trial. For now, they are continuing it, but the thought of losing this treatment, losing this hope, is beyond heartbreaking to us. However, all we can do is put one foot in front of the other, live each day as best we can, and love our boy.
Music therapy time during infusion!
Even with the possibility of the trial ending hanging over our heads, we work to fight and to make the most of each day...
...we read books, we got out to movies (Lego Batman was a success!)...
...we enjoy birthday cake at birthday parties...
...we paint pictures...
...we swing...
...we race...
...we fundraise...
...we hug...
...we go to church...
...we keep on fighting. We live.
And through everything, Little Buddy stays happy and joyful. Everything can be chaos around him, but he keeps on keeping on. One day at a time, right, Bubby?
Love this boy.
Height and Weight
Weighing in at 65 pounds and about 51 1/4 inches this month!
Personality
Overall, still very happy. He's been singing a lot for us lately too!
Developmental Changes
Praise the Lord, Little Buddy finally sleeping better! He's sleeping through the night again and going to bed easier. All of this makes everyone in our household's lives so much easier. Here's hoping it stays!
We've also had some good news from his school. They have found a chair for him that keeps him seated, which allows him to focus better and work. This has been huge because Little Buddy literally cannot keep still...his Sanfilippo hyperactivity is in hyperdrive and he is always moving. However, he doesn't mind being seatbelted into things and it allows him to be still and concentrate more on what's in front of him. He also has been working with a visual schedule at school and doing well. It's so nice to get good reports from the school about our boy!
New chair and visual schedule...whatever it takes to allow our Little Buddy to have a productive day at school!
More school fun! Enjoying the Dr. Seuss celebration and participating in the vocabulary parade (they dress up as a vocabulary word...his word was "dapper")!
Fun Tidbits
February 28th was Rare Disease Day. Once again our fearless boy went into the world spreading awareness on this important day. We need a cure!
Our MPS boy is fighting for his life!
That's all for this month. I'd say next month would be a little chaotic, but we have a lot of trips scheduled, so I already know it won't be!
Good night,
LBM
Little Buddy's Momma
