I’m back after summer! It’s been a busy one and we’re starting to get into the new Fall routine. I’m sort of, kind of, really excited about Fall! I’ll do a little individual updates on the family and what we’ve been up to for the past few months.
Miss Paige has been hard at work all summer with therapies and Conductive Ed camp. The Paige Patrol t-shirt fundraiser we had for her was put to great use in this camp and we are thrilled with her progress. Initially, we signed up for a four week camp with Paige going Thursdays and Fridays from 9am-noon but ended up attending all eight weeks! I was there with her and it was a block of therapy that basically focused on muscle memory and incorporated both gross and fine motor skills. I describe it as conjoined Physical and Occupational Therapy. She was in a preschool classroom environment with several peers so she had interactions with other children and adults, which I loved!
The day started with a good morning routine and introductions. Paige enjoyed the songs and was incredibly receptive to the instructions. Then, we made our way to the planks (slotted wooden benches) and did back and tummy workouts. We stretched and focused on each muscle group with a different exercise. All of the workouts seemed to be really simple but they were actually very detailed and required Paige to use her hands and feet simultaneously, head control, muscle strengthening, visual focus, cause and effect, and body movement. The exercises were the same every single day and incorporated really fun songs, dances, and toy props that were interesting and stimulating. Paige did a fantastic job and gained leaps and bounds with her fine motor skills and hand exploration (which has been a huge obstacle). I’m 100% positive her favorite part was the body massage with a spiky ball at the end and I can’t blame her one bit. She worked hard!
Next, was snack time, or as the Hungarian conductors called it, morning tea. Each child had their own spot at the table and they sat at a bench with “their person” behind them to help them eat and drink. We worked on using utensils and the adults used this opportunity to talk and compare notes, so to speak. It was great to have Paige be part of a group and she really loved it. I really loved it!
The last hour was dedicated to sitting and standing work using wooden ladders, benches, yoga balls, and props. The conductors did a great job of entertaining the kids with songs and games and every activity has a cause and effect goal that went along with the muscle building. Paige wore her AFOs (foot/leg braces) and her Benik vest (for back support) which helped alleviate some of the work from those areas so she could use her energy to work on the activities.
When it was time to leave, we said our goodbyes and each child had to work to get out of the door. Paige was usually assigned to roll or army crawl out the door. Towards the end, we tried taking steps using the ladder and that was incredibly moving to see!
Overall, we had such a wonderful experience that we decided to enroll Paige in the Conductive Ed preschool one day a week in conjunction with CE coming to the house via Early Intervention. Paige gets to be in a preschool environment and still continue her visual, physical, and occupational therapies at home!
I’m super happy to report that Paige is also MOBILE! She is rolling around as her mode of transportation and exploration. She likes to scour the floor and usually gravitates to the dog’s bed. We weren’t ever sure if she’d ever roll over and it’s so amazing to see and we never take her progress for granted!
Mr. Will also had a busy summer! He attended his own summer camp through his preschool and he had an absolute blast with it. He enjoyed exploring outside, collecting rocks, swimming, dressing and picking out his own clothes, staying up late, shopping with his mom and playing sports with his dad. He has a really great group of friends he’s known since they were all babies, and their mom’s happen to be my best friends, so we get together frequently and had a really great summer of playdates, birthday parties, and exploring Pittsburgh.
Speaking of birthdays, Will turned FOUR on August 30th and had about 3 weeks worth of birthday celebrations. His first was with his buds at Chuck E. Cheese’s, second was bike shopping and dinner with the Barbour side, and the third was spending a fun day at Del Grosso’s amusement park with the Shearer clan!
Our little man just started 3-4 year old Pre-K and will be attending three days a week with his friends and teachers from last year! We’re super proud of him and we’re excited to see what he learns this year.
In other news, we found out that Will and Paige are going to be a big bro and a big sis to a baby BROTHER! Yep, it’s definitely a boy and he’ll make his entrance into this crazy crew in mid January. The pregnancy is going well so far and, due to Paige’s history, we’ve been monitoring the head shape and anatomy a little extra carefully. Per our genetic report, another Lissencephaly diagnosis has less than 1% chance of happening but it’s still very nerve-wracking and I would be lying if I said I didn’t get anxious about it. The twelve week ultrasound and the anatomy scan showed everything looked great, so far. We are planning to do a follow-up scan at 30 weeks and a possible fetal MRI to make sure. Our MFM doctors are pretty confident that if the 30 week head scan looks good we can forego the MRI. I don’t know how I feel about THAT but we’re taking it one day at a time and I’m going to think positively.
**I really waffled on if I should add those extra details or not but I decided to include them because some Liss parents have asked me about my experience to take the “next step”. Deciding to have another child after a diagnosis isn’t an easy decision and I know that I asked many parents about their experience before we decided. I always want to be honest, so if it helps the curious, I’m all for it!
And some more pictures just because…
More updates to come!