Valentine's plates and presents ready for breakfast! He definitely seems to approve!
Mr. Handsome is all ready for school!
Quick detour for ashes since Ash Wednesday and Valentine's fell on the same day this year!
He had such a fun time dancing!
Love this little cowpoke!
Then we got to celebrate Rare Disease Day at the end of February!
The bravest boy I know!
Easter is coming, so a quick Spring Break stop to get some Easter pictures was in order.
This pictures came out great!
For the past two years, Little Buddy has missed out on the Special Olympics offered at his school due to Minnesota travel or school being closed due to flooding in the area. This year, he got to do it! Such an awesome event!
Lots of fun doing the events! Loved watching him accept the torch at the end!
Excited to hear that our dear friend, Mr. R, qualified to run the New York Marathon and that he is doing it honor of Little Buddy! See you in New York in November Mr. R!
Ms. A was home for Spring Break! Little Buddy was so excited for some bedtime stories and cuddles from her!
It's also that amazing time of year in Texas where the weather is actually nice! Not too hot and no mosquitos yet, so we are taking as much advantage of it as we can!
Bike time!
Backyard fun with Chesney and the swings!
Height and Weight
Currently 71 pounds (close to 72!) and 53.5 inches according to the doctor's office.
Personality
His smiles are starting to come back, but the sleep has still been a problem, making him grumpier and more agitated still. It's rough and I just wish we could calm or comfort him better.
Developmental Changes
The sleep issues have came to a head this month. Not only was he not falling asleep or staying asleep, we started to experience screaming. It was heartbreaking. We were so worried that he was in pain with intracranial pressure that we called in an emergency prescription for diamox to try to help.
A normal night for us. One of us trying to sleep with him and calm him down and it not working. He just couldn't sleep, meaning Momma and Daddy couldn't sleep either. It was really a tough time. You don't know how much no sleep hurts you until you are hit with a bad patch of it.
He was just so exhausted every day.
I tried to let him sleep in as much as I could each morning (many times he only fell asleep around 3 or 4 AM). He was so hard to wake up when we needed to go somewhere, but Little Sweetie decided to try to help.
This picture marks the worst day we experienced. We were headed to church on a Saturday evening, like usual, and suddenly Little Buddy started to incessantly scream as if in pain. Nothing we could do would calm him down. We went to a park, we went to get him his favorite food, nothing changed it. It was terrible. There was nothing externally physically wrong with him. We immediately called our doctor and she kindly prescribed him a low dose of Diamox. If it was pressure issues, the diamox would help almost immediately. We gave it to him in the parking lot of the pharmacy with applesauce. This is him nearly asleep as we drove home, showing some relief.
Although he showed continued agitation and some sleeplessness over the course of a week, we were getting more periods of smiles and contentless. We also haven't had any more severe screaming incidents. Unfortunately, the diamox is also giving him diarrhea as a side effect. Diamox is a common treatment for Sanfilippo kids, but some kids need to be on it regularly and some only use it when necessary. Hoping he can be a when necessary kid if possible so he doesn't have to deal with the GI issues.
Finally, a glimpse of our happy boy!
Even starting to sleep enough to get energy to feed himself again!
I need to give Little Sweetie some praise here. With Momma and Daddy not getting sleep, we had to explain to her why everyone is the house was sleepy and grumpy with no energy but her. She really tried to help. Each night she prayed for Little Buddy to sleep well. She would try to cuddle him in the evenings and help get him ready for bed. She may only be four but she has to face a lot as a special needs sibling and it means a lot to see her empathetic heart grow.
It's not all been bad this month. We have had some good developmental changes too! First and most impactful is that Little Buddy got a new teacher at school and she's amazing! Ms. P has really changed the dynamic of how Little Buddy's school day has been going and we are feeling the benefits at home. He's getting more freedom and more interaction and the difference is clear. He's coming home from school happier and less frustrated.
Sitting in a REGULAR chair doing is work! Amazing! And look at him connecting with his classmates!
The second best piece of news is that Little Buddy's eyes are perfect! He had a vision test at school that showed the possibility of an astigmatism. I was scared out of my mind, one because this meant that he had to submit to a full eye exam (including drops) and two, because there was no way he was going to wear glasses (he won't even keep on sunglasses. Never has.). But thankfully we survived the eye appointment and received good news!
For once, we actually had a doctor tell us something about Little Buddy was NORMAL! Wahoo!
And we also got to see snippets of our old Little Buddy in between the tiredness and frustration, which would lift our hearts.
Watching him enjoy a new toy (when he's interested in new things, that's a big deal!) and still be jumping fool at My Gym show us that he's still going strong and fighting against Sanfilippo.
Fun Tidbits
Little Buddy needed to do service for our church for him to receive his First Communion (coming up soon!). He was able to be a greeter at Mass, which was perfect. What better way for him to serve than to light up people's day with his smile.
Who wouldn't want to be welcomed by this face?
We'll report back next month! Hoping for more improvements.
Always,
LBM
Little Buddy's Momma
