Hellobee

D and K recently had their birthdays and although I’ve been saying they’re 2 and 4 for a few months now, I’m not quite used to the reality yet; the cliche “the days are long but the years are short” is so true! We had very low key celebrations this year which the kids didn’t mind at all. For D we had corn bread cupcakes (minimal sugar compared to regular cake) and went to an indoor trampoline place he loves. For K we had cake, a movie at home (he chose Planes) and went to the pet store to buy some fish for our aquarium! We had grand plans to go to the zoo but the weather didn’t cooperate. Perhaps my kids have low expectations but they had fun in the pet store!

Here’s a snapshot of their lives right now – they’ve both been doing great!

First let’s talk about D! His 2nd birthday is a big milestone for us in so many ways. Most pressingly, it marks an entire year free of hospital stays or urgent care visits! He was last admitted to the hospital when he was 5 months old, but a few days before his 1st birthday he decided to give us one last scare and leapt headfirst from his highchair, earning us all a trip to urgent care. Thankfully the past year didn’t have any of that funny business. Knock on wood, I hope I get my wish that his next overnight hospital stay will be for the birth of his first child!

He started going to daycare with K over the summer, 3 days a week for 6 hours a day. The start was a bit rough with a lot of crying, but lately he hasn’t been crying at all. He seems to have fun playing with his little buddies and has connected well with one of his teachers, who is always gushing to me about how sweet and smart and handsome he is. I couldn’t agree more!

We also enrolled the kids in swim classes. D’s in the mommy & me class (well, daddy and me since Mr. T does it with him!) and loves it so much. He does not appear to have any fear of the water (which we learned on our vacation to the Outer Banks this year) and is amenable to trying out everything. He’ll happily relax to float on his back, bravely jump in the pool, and even lets Mr. T dunk him occasionally! The hardest part for him is watching K and waiting for his class to start.

As for D’s overall health picture, things aren’t too different from where he was a year ago, although his physical capabilities are much greater. He still goes to see the GI docs every few months, gets IVIG infusions every 1-2 months (unfortunately it’ll be every month again during flu season), and gets twice monthly visits from our early intervention OT.

Stuffing his face and watching Bob Zoom during an IVIG infusion

Our OT focuses on eating and talking, and I’m more convinced than ever that D’s mild case of CP really just affects his oral muscles. He’s made a lot of progress but it seems like any oral motor skills just require a lot more focused effort for him! From what I can tell his gross and fine motor movements are completely appropriate for his age – he runs, sort of jumps, can grab and hold multiple objects easily with either hand, etc. The only area that I think he’s a little behind on is safety awareness; we joke that he doesn’t realize he’s mortal! We have to watch him VERY carefully at playgrounds since he will just step off of high places, or run down stairs where he doesn’t have great balance and should be holding on with his hands. I’m confident those skills will just continue to improve and am really only focusing on PT for his mouth!

We got more Chewy Tubes to work on strengthening those oral muscles, which he’ll happily gnaw on. Just recently Mr. T and I have noticed that he’s been drooling less, sometimes making it an entire day on just one bib, for example. He loves crackers but I often have to fish the remains out of his mouth since he can’t figure out how to gather and swallow them, but I’ve had to do that less frequently these days – he’s been able to handle a greater variety of textures on his own! He is definitely still extremely reliant on his feeding tube (gets formula overnight and three doses of ORS during the day) and I refuse to postulate about when it will come out. For now, he needs it and we’re all used to the logistics so it’s not a battle I’m looking to fight.

As for speech – he’s come a long way but still has a long way to go. I think he has just over 20 words (not counting names of people) and occasionally puts together 2 word phrases (“more please” etc). I feel that this is a true delay and not a lasting impediment – although perhaps he’ll be behind his peers for the foreseeable future, I think he’ll eventually catch up and be able to speak normally. He certainly understands complicated phrases and instructions! I wonder if an “explosion” is coming as well; it seems like I recognize a new word that he’s picked up every week or so. “Bus” is a new favorite, thanks to all of the school buses back on the streets! Sometimes I am sad about his language capabilities, especially since K probably had the same level of words around 1yo, but he’s come such a long way it’s impossible not to be proud of his progress!

Now let’s talk about K! He had a great year although would occasionally get stuck in the threenager zone. I’m hoping the 4’s will be better with less crying and whining, fingers crossed! It’s now pretty clear that although K is very shy in new situations and around new people, he’s a total extrovert. He always wants someone to come over our house or for us to go over to other people’s houses or just go out SOMEWHERE! Any solicitors or mailmen that come to our door always get asked, “are you going to come in and play with us?” He is crushed when guests leave or when I tell him that we have to go home. He’s started developing true friendships with a few kids – before he would rarely tell me anything that happened at school but now he’ll report on what his buddies were doing.

K showing off his “silly face” and Mr T’s aquarium

K just recently started soccer in an under 6 clinic league. They meet once a week for an hour and work with a young coach who is fantastic and keeping the kids interested. They work on soccer fundamentals and skills (like running and handling the ball with their feet) in a fun and playful way, and then finish with a mini scrimmage among the team. K loves running and showing off how fast he is, and is getting better about chasing after the ball. Several of the kids in the clinic are on their second or third year, and you can definitely tell the difference! Mr T’s favorite sport is soccer and he’s thrilled that K likes it as well. I suspect that we’ll sign him up for any season that is available until he tells us he’s done with it. I care less specifically about soccer, but feel that having experience with team sports is very important.

As for swimming – he just passed Level 1 and will move on to Level 2! He went from being totally uncomfortable and wanting to cling to an adult in the water (as he did on our vacation), to willingly bobbing his head, blowing bubbles, and allowing the teacher to support him floating on the front and back! He hated the first lesson SO MUCH but we switched to the first time slot on Sunday mornings which was much less crowded and intimidating. Although we considered doing private lessons, it seems like he needs the peer pressure to complete the tasks, so we’ll stick with the small group lessons. I lifeguarded for many years in high school and college and consider swimming to be awesome recreation and exercise but more importantly, a necessary life skill. Seeing K draw up courage and try new things in class fills me with so much pride! The pool we take him to has a one way mirror for the parents to watch unseen which has been so helpful – he can’t see us and doesn’t ask to get out of the pool!

Wow, I guess I had a lot to say! Kudos to you for making it all the way through that manifesto. What activities are your LOs into these days?