Raising your Sanfilippo child along with your three year old neurotypical child is not easy. I can do each of them individually one-on-one great. We can do family outings with two parents and two children no problem But just me with both of them? All day long? It gets challenging.
Little Buddy can't be left without supervision. Sometimes it's even difficult for me to go to the bathroom. This also means it is hard for me to take care of Little Sweetie's needs. There is a lot of "hold on, I have to help Bubby first," or "We can't while Bubby is home." It's hard, but thankfully my little girl is quickly becoming independent, empathetic, and helpful. She's learning that Little Buddy requires all of us working together to keep him safe and happy. But it is hard finding developmentally appropriate activities that suit both of them over break where Little Buddy can be safe, Little Sweetie can entertain herself while I stay with Bubby, and where they can hopefully wear themselves out (although it is nearly impossible to get Little Sweetie to nap while Little Buddy is home, and she [and Momma!] still needs her nap. But I can't leave Bubby alone long enough to put her down, so the naps go by the wayside over break. This leads to a cranky toddler by dinner and a completely worn out Momma!). And staying at home isn't an option because then they just destroy the house and I'm up all night trying to clean it up!
Thankfully, we found a few ways to pass the time.
Some playtime at My Gym and Pump It Up!
Sibling picture after lunch (the struggle to get them to both look at the camera the same time is real)! There's a lot of lunches out over break, just so we can meet Daddy. It's hard to make sure they both eat when it is just me. Little Buddy sometimes gets overstimulated at restaurants and then Little Sweetie gets by with eating barely anything if I am having to pay attention to him.
When Daddy is with us, we can take bike rides and go running to earn miles for Run Club!
And just because he was on Winter Break didn't mean Little Buddy was on break from his trial! Two trips to EXTREMELY COLD Minnesota also occurred.
Here we go again!
Trying something new on the plane...Little Buddy's super ears! He's been doing well with his hearing aids at school, so I decided we could try them in Minnesota. We didn't lose them, so I consider it a success!
We are kind of a big deal in our hotel...we even get Christmas cookies!
Enjoying lunch during his infusion!
The great thing about this set of visits is that Little Buddy's post-infusion observation time programing changed. It went from 2 hours of observation to 1, which means...
...we can catch an earlier flight back to Texas and be home in time for dinner and bedtime stories!!! This is WONDERFUL because, before, Little Buddy wasn't getting home and to bed until around 10 PM. This will be so much nicer to allow him to get a full night's rest after traveling.
Happy to be home together!
Height and Weight
Our home measurements have him at nearly 51 inches and 64 pounds.
Personality
We had just finally hit our stride over break and found a great sleep/play balance. And then school started again. Sigh. He's been more emotional around dinner time again and we think it is just due to tiredness from school. Hoping to get him readjusted soon!
Even though he's sleepy after school, we can get lots of smiles from him on the weekend!
Developmental Changes
We've actually had a lot of good sentences this past month! His in-home speech therapist, after observing how well he was doing in the mornings with therapy, has decided to start coming before school. He's been doing well with that, most likely because h is fresh and not so tired.
In terms of gross motor, he went on a bike ride with his sister! Daddy helped guide him and kept him moving, but he kept his foot on the pedals and keep pushing! And he earned his 25 miles at Run Club, meaning that he will receive his Marathon Medal after his race in March. This is the earliest in the season that he has earned his miles...we are so proud of him!
Marathon Medal bound!
Fun Tidbits
On the eleventh of every month we try to do something to recognize Little Buddy's birthday. We're not the only ones who help to make this day special. One of Will's best friends, J, and his family live in California. Each month, J sends Will a card or a drawing for his month birthday. Will loves opening this special mail from his friend.
Reading over his mail from J!
LBM
Little Buddy's Momma
