August 30 - Blood Work

August 30 - Blood Work

We got to the hospital today and P was back! Levi was so happy to see her. He ran in and picked out his band-aid and then was off to his chair.

 The draw went so quick and easy that he barely had time to load a game on the tablet let alone play the whole thing. Then he was off to the treasure box. He picked a green pick up truck and was super excited to make it run on the floor, but it would't go in it's package and for some reason he didn't ask me to open it.

 Then on the way to the donut lady he saw that his fountain was all boarded up. He was very sad and worried about it. He kept saying that he hoped it felt better and that they fixed it. I am not sure what they are doing to it, but I hope its fixing it and not removing it!

 Then we were off to the donut lady for a yummy donut! He was super excited this morning and full of energy.

Labs came in about 35 minutes later today. His count was 235! An 86 point drop in a week. Not great! But its still a great number so we will run with it.

Next Plan: Blood work again next Tuesday (since Monday is Labor day!) Hope everyone has a great long weekend!

August 23 - Blood Work

August 23 - Blood Work

We got to the lab today and Levi was in rare form. We stopped at his fountain for a second to say hi and then we were off to the lab.

 As we were walking over Levi asked me if P would be here. I said I didn't know but I assumed she would. He turned the corner and saw AM and in the safest voice ever he said "No P. It's just AM!" I felt so bad! But AM took it in stride knowing that they have a great relationship. She said that P was on vacation. There was a bit of a wait so Levi had a seat and continued to be a goofball.

 When it was Levi's turn he went running in to get his band-aid.

 Then he climbed up in the chair to wait. He was not amused that it takes AM a few extra minutes to do the paperwork then it takes P who has it down to a science at this point, I think she could probably fill out Levi's paperwork in her sleep.

 He finally smiled when she came over to get started.

 The draw didn't go so well. AM missed his vein and ended up having to stick him twice because she didn't want to dig around in his arm. Levi was not impressed and you could tell that AM felt awful. But Levi never cried. He did saw "ouch" and "Ow" a few times but he did really well. We stuck to our decision from years ago that it's one thing from the treasure box per stick, so Levi got to pick two things today.

 On the way out of the hospital he determined that he and his new green owl needed to sit on the bench and wait for a minute. Not sure what they were waiting for, but they set right down.

Eventually I got them moving and we headed off to school.

Counts came in around 9. Levi's count was 321! A great number and another increase! Woo Hoo!! Two weeks post infusion and we are still increasing!! That's always a great sign.

Next Plan: Due to Kids Day and then Levi's first day of Pre-K we will not be doing blood work again until Next Thursday. With his counts so good skipping one draw won't be a big deal and he needs to not miss special things if we can help it.

August 22 - Endocrinology

August 22 - Endocrinology

Today was Levi's endocrinology appointment. Sometimes with everything going on with his USS it's easy to forget that his thyroid doesn't work either. The morning meds he takes are such routine at this point I don't even think about them, just flavor them and hand them over. But every 6 months we make the drive to Manchester to meet with Dr. Cl to discuss how Levi is doing and check his counts. 

The drive down was awful. Horrible rain storms and could barely see, but we had left plenty of time as I wasn't sure how long the drive would be from some days house, so we still arrived early. We got all checked in and headed upstairs. 

Levi was a crazy man in the waiting room, but I got him to be good enough and was able to fill out his paperwork. For the last few Jay hasn't been coming as it's several hours in the car for a 20 minute appointment. It doesn't seem to make a lot of sense for us both to miss work for that. 

Levi got called and we headed in. He did a pretty good job doing height and weight and then we headed into the room. Levi climbed up on the table and played with the toys. 

 After a few minutes Dr. Cl came in and we discussed the last 6 months with him. Levi's TSH and Free T4 are elevated again, but since they are both elevated at the same rate and Levi is not showing any clinical signs of hypothyroidism we made the call not to change his meds at this point. We will do blood work again in November and possibly do an increase then.

Then we were outta there. Levi got 2 stickers on the way out and was super excited to share saying that one was his and one was mine. It was really cute!

We will be back in 6 months, and for now we are status quo! It's hard to believe that 4 years ago his thyroid is what kept me up at night and had me scared. Now it's just a little blip on the radar. It really is true that everyones 10 is different. When Levi was born his thyroid was our 10, now USS takes that by far and his thyroid falls to a 3 or 4 on the stress level. Just goes to show how much life changes.

August 20 - Blood Work

August 20 - Blood Work

Happy Monday! There was no line or waiting at the lab today and Levi was excited to go running right in. P had the tablet all set for him and he started playing before he had even opened his band-aid.

 The draw went quick and awesome as always and then Levi was off to the treasure box. It's always a little hard when there is a patient waiting at AM's station as Levi just goes running over there, but at this point no one has said anything to him, and have all just complimented him on how well he did, so hopefully that will keep up.

 He picked another fish tank today and asked if he could stop and fill it at the fountain. I said sure, it wouldn't hurt the fountain to have 2 tablespoons less water in it. So off we headed. Levi tried with all his might, but the fountain just wasn't deep enough for any water to get in to the fishtank. He was disappointed but managed it well.

Counts came in 30 minutes later today. His count was 304! Woo hoo! Still going up! And now over 300! Always nice to see that.

Next plan: Blood work again on Thursday.

August 16 - Blood Work

August 16 - Blood Work

As we were walking into the hospital today P was coming out. She was going home sick. :( Levi gave her a big hug and told her to feel better. We stopped at Levi's fountain to say hi!

 And then headed in to the lab. We knew that AM would be there. She apologized and said that P had just left.

Levi headed in to get his band-aid. Then we tried to get the tablet to work, but I swear that thing only ever wants to work for P, so Levi played on my phone instead. He colored this whole watermelon!

 AM did a great job with the draw. It was a super quick in and out! Was great. And Levi only give her a few dirty looks. He is starting to feel more comfortable with her, which is nice.

Then it was off to the treasure box.

 Then off to see the donut lady! He was super excited to give her hugs and to pick the donut with the most sprinkles on it.

Counts came in a little while later at 284. Another huge increase! It's so nice to watch his counts tick upwards instead of down.

Next Plan: Blood work again on Monday!