Hello April and Springtime! It's hard to believe it's been a full year since the world turned upside down, but we're glad to still be healthy and well. Thankfully, school looks like it will continue for the rest of the year and we won't have to 4th quarter homeschooling again--yay! Lots has happened in just a month, so let's dive in.
Spring Break was in March. The good news is that this was also when Little Buddy was scheduled to travel for his clinical trial (meaning he didn't have to miss school) but the bad news is that this was when Little Buddy was scheduled to travel for his clinical trial (meaning we didn't get to have much family time together as Little Sweetie was staying in Texas with Mimi and Pop-Pop). We did what we could, though, including celebrating Daddy's birthday with cake and Top Golf, going on a zoo trip, and having a little St. Patrick's Day fun!
Last day of school before Break...he's ready!
Happy Birthday Daddy!
Zoo time with the Wild Kratts!
Our little leprechauns!
Then it was time to head to the West Coast for Little Buddy's clinical trial. We have, unfortunately, reached the last stage of the trial which is when we discontinue the drug and look for side effects and withdrawal symptoms. I never thought I would say I missed giving my son a daily injections, but here we are. Again, hard to believe we started this process a year ago and are now on the other side.
Exhausted after a day of travel!
Long day in the clinic...he eventually took a little nap!
A fun reward after a long day...getting to see Mr. R, J, and Uncle C and Aunt A!
Heading back to Texas!
Our next big adventures happened over the long Easter Weekend! The weather was gorgeous (and I know the heat is coming soon) so everyone had to deal with Momma making us head out on lots of outside activity time to take advantage of it.
Enjoying a nature walk at a local nature preserve!
Lots of fun strawberry picking at local farm!
There weren't a ton of bluebonnets in our usual field, but there were some, so we're checking annual Texas bluebonnet pictures off our list! It counts!
And, of course, we enjoyed the regular Easter festivities too! We did church virtually again but had a great time at home together!
Coloring eggs!
Easter Bunny pictures (socially distanced, which was kind of nice)!
Finding our Easter baskets!
Hunting eggs, inside and outside!
Doing some spring crafting together!
And enduring the multitude of pictures Momma wanted to take to memorialize the day!
Height and Weight
This month he's at 93.2 pounds and at 59 1/3 inches.
We love you, Little Buddy!
Well, because of circumstances outside of our control, we have a grumpy and agitated guy this month. :( Lots of sadness and weeping and bad sleep. A lot of this has to do with the loss of the clinical trial drug and withdrawal symptoms. The drug was an anti-inflammatory, so we believe is was managing a good deal of discomfort Little Buddy experiences because of Sanfilippo. Losing that, in conjunction with the FOUR molars that are trying to push through (resulting in very inflamed gums) has resulted in a very sad Little Buddy. We're working to manage the symptoms the best we can. Him being in pain and inconsolable is just heart-breaking.
Developmental Changes
Lots of challenges this month. As mentioned above, Little Buddy is dealing with agitation and discomfort right now and that impacts his daily life and functioning. He's reach levels of agitation and inconsolable sadness he's been sent home from school. He's taken a bad tumble at school, scraping up his face, making us worry about his balance and stability. We try to manage everything the best we can, but it's been a rough month.
Any sadness or pain he feels breaks my heart.
Anytime we get a few bright moments, we are so happy. A toy that helps settle him down for a moment, a song making him laugh. All we want is that smile and our boy to be happy. He deserves to only feel happiness.
A few peaceful moments between the tough ones. Hoping we can find ways to manage his discomfort and keep him at peace more often.
We're also working through some things with Little Buddy's after-school therapies. His longtime and beloved physical therapist moved away and his replacement therapist took another position, so we are currently without PT. This is very concerning to us as PT is HUGE in keeping him strong and his quality of life high.
We need PT!
The good news on this front is that he's at least been able to FINALLY start back at horse therapy. It's once a week, but it's so beneficial and will hopefully help him keep his strength and coordination as we wait for another PT assignment.
Fun Tidbits
A busy month, both full of fun and challenges. And through it all, we see Little Sweetie being the best sibling possible to her brother. The love they share is beautiful and unique.
Sibling love!
In a month, school will be winding down and we'll be planning our summer. Time marches on and we're ready for the next chapter!
See you in May,
LBM
Little Buddy's Momma
