This month has gone GREAT! Liv has been happy and felt great!
There was one big thing that happened this month, however. I have been worried about Liv for a while. We have always commented on how Liv is our clumsiest child. She trips and falls ALL THE TIME, her legs look like noodles when she runs, and she snaps her knees back and slaps her feet when she walks. She also doesn’t ever hold her body up when she is sitting on your lap, she just completely melts on to you and doesn’t use her abs. I used to brush it off as she was really tall and just hadn’t gotten control of her body yet, but the further and further she fell behind Street and her other peers, the more I worried it was something more than that. I worried she had some low muscle tone. I brought it up at her 5 Year Well Check visit with her pediatrician and he had her do a few things for him. He said he felt that she looked like she did have low muscle tone and referred me to a Pediatric Rehab facility to be diagnosed.
I took her to the appointment in Orem and they had her do a bunch of strength exercises and stretched her in a lot of different ways. The appointment took two whole hours and she was on steroids at the time, so she was not the happiest of campers. By the end they diagnosed her with low muscle tone in her legs and a little bit in her abdomen. They sent us home with daily stretches and exercises to do with her and also told us she needed to come in for Physical Therapy once a week. I was so grateful to get a diagnosis and have something to help her, but was also completely overwhelmed with more doctors appointments. My heart also broke for her, just one more thing to add to the list of things that she has to do and that makes her different from other kids.
We have gone three times though, and have already seen some improvement! At the first appt, they could barely stretch her calves. By the second appt, after we spent all week stretching, there was a HUGE improvement. The Vincristine chemo she gets once a month is very hard on their leg muscles and tightens them up. I’m glad to know of some stretches to do for her to keep them from tightening up.
Here are some fun things she has been up to:
We got a phone call from Make A Wish asking us if Liv could be their Wish Kid at an upcoming assembly. When they told us it was for Lincoln Academy, Yia Yia and Papou’s school, we were so excited! Their student council has been working so hard to raise money for Make A Wish. Their goal was to earn enough money for Liv’s wish, but they already have raised more than that!
This was at the Fundraiser’s kick off assembly. I had to speak for about five minutes on what Livvi was diagnosed with, what this last year has been like, and our experience with Make A Wish so far. It was the day before our one year mark since diagnosis and I was very emotional. I didn’t expect to cry, but I sobbed up on the stage, haha.
After the assembly we headed to her second physical therapy appointment. Surprisingly she was amazing and was very talkative and had so much fun with her therapists. They are great guys and do such a good job with her! They make therapy fun, which makes it a lot easier for the kids to like.
Here are some more things she has been up to:
Another PT appt:
Over the weekend the weather was beautiful and we went to play in Yia Yia and Papou’s backyard. Both Daci and Street can do the monkey bars now and Liv kept wanting to try but couldn’t even hold on to the bar for more than like two seconds 😦 We will keep working though!
Clinic was yesterday and she did pretty well. It was a REALLY long one. She usually does really well for about two hours, but anything after that gets hard for her. Her appt wasn’t until 1:30pm this time and when we got there we found out they didn’t order her meds from the pharmacy ahead of time! Ah! The pharmacy there is just slammed and it always takes a really long time to get anything from them. There were also a bunch of people in clinic that day and they didn’t have a room for us for quite a while. Once we finally got in a room we played Memory and she had a lot of fun with that. Then Dr. Afify came in and she gushed and gushed about how beautiful Liv is 🙂 Of course Liv didn’t look at her or talk to her, ugh! haha. Then Rick showed up and totally surprised us! He had meetings and couldn’t come with us to clinic. They finished up and he stopped by to surprise us on his way home. It was really fun 🙂 By the time the sent us back to infusion it was already 3:15pm and we still didn’t have the meds. Ah! Finally at 3:30pm they brought them up and we got started. They did her Zofran and her Vincristine first, then they hooked her up for the 1 hr 15 min infusion of Pentamidine. Just like always, about ten minutes into the transfusion she started feeling yucky 😦 She was sad and flushed and nauseous and had a headache. I hate to see her so sad. She did great though and watched a show the whole time, the only time she cried out loud was getting deaccessed. She hates that. But it was quick and we were on our way! Until of course we got to the car and realized it was rush hour. Waaa! It was a long ride home and she was really nauseous. She had her barf bag in her hand the whole time but luckily the Zofran did its job and she didn’t throw up 🙂 Done with clinic for another month! Yay!
Her ANC went down to a good range after Dr Afify increased her dose of 6MP to 1.5 pills 6X a week and 1 1X a week, rather than what it has been at 1 6X a week and 1.5 1X a week. But her WBC and RBC dropped a little bit. They still would rather keep her ANC in the right range and have the rest a little low, but they are going to get a CBC in 2 weeks to be sure that it doesn’t keep dropping further.