Maintenance Month 4

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.

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At her initial appt, where she got diagnosed. Don’t let the smile fool you, she was really grumpy the whole time and wouldn’t talk to James at all.

Here are some fun things she has been up to:

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The kids love to get their haircut at Cookie Cutters. While the boys get their haircuts, Liv plays on the slide 🙂
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She is the BEST big sister to Stade. He adores her and says her name all day long: “Wubby!”
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Liv had a playdate with her cute friend from school. They had a blast doing makeovers 🙂
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Building towers with Stade

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.

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Liv with her Yia Yia

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The Student Council made a basket for her and also made her that floral crown and bracelet. She loved them!

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.

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For this exercise she is strengthening her core. The shapes are on the ground and she has to lean down to grab one, and then use her back muscles to pull herself up without using her hands and put the shape in the sorter
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This exercise is to strengthen her legs and help her with balance. There is a balance beam that goes across the room. She walks to one end and gets a puzzle piece, and then walks along the beam to the other end to put the piece where it goes. She does that for the whole puzzle

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We then go for a walk to the hospital, the whole walk over she is supposed to walk on her heels with her toes up because she has low tone in her muscles in her shins. Once she gets to the hospital she does stairs. She has to do them one foot at a time (she has always gone down the stairs meeting her feet together on each stair) and she has to practice going as quietly as she can because she just slaps her feet down and doesn’t use her muscles

Here are some more things she has been up to:

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Costco trips with Street and Stade while Daci is at dance
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The weather has FINALLY warmed up a little bit! The kids have spent a ton of time on the swingset in our backyard 🙂
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Daci was baptized last weekend and it was such a special day with family!
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Doing her exercises each night before bed 🙂

Another PT appt:

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This exercise was really awesome. That cone is very flexible. She had to tap the cone, alternating feet, over and over again. Any time she made the cone collapse, she lost a point and any time she tapped it without making it collapse she gained a point. I think she had to get up to 50 points. She was exhausted by the end! It really worked her muscles and helped with balance.
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Next she got to go out on the playground. She did a ton of climbing up the stairs and the ladders and the rock walls and then she would get to slide down. Her therapist was so cute with her. He raced her down the slide and she loved it. He is a big guy and he had to slide down on his hip so he didn’t get stuck. haha!
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Heel walking around the whole playground. She really doesn’t like to heel walk 🙂

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!

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Liv learned how to braid this weekend! I taught her at the beginning of sacrament and by the end she could do it 🙂
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So proud of herself 🙂
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Her hair is at a really cute stage right now!

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 counts:

ANC 1100

Platelets 220,000

WBC 1.8

RBC 9.9

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.

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