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!

August 13 - Blood Work

August 13 - Blood Work

Happy Monday!! We got to the lab and there was a short wait so we got in a cute picture!

Then P told Levi to come in and he was checking out the new band-aids. P put them in different containers instead of just the boxes and Levi thought that was neat.

Then we climbed up in the chair to play puzzles and wait.

The draw went as well as it always does! P is truly amazing at what she does. Then it was off to the treasure box. She pulled out the bags for him again to pick from. He helped her empty the bags into the treasure box! He ended up picking a fish tank. I don't know how his little mind picks what he wants some times. It doesn't seem to make sense to me. He thinks something is really cool and then doesn't pick it. Always confuses me.

Counts came in in 12 minutes today! That may be a new record. His count was 221! A great 120 point increase post Friday's infusion! That is awesome and exactly what we like to see! Hopefully it will just continue to go up and all will be good for awhile.

August 10 - Infusion #44

August 10 - Infusion #44

We got over to the hospital at 7:45, plenty of time to drive all the way up to Purple and park. Levi is always excited when we do that. Levi and Bear found the elevator and we raced daddy who went down the stairs. He managed to beat us this time!!

We got checked in and went out back. Levi really wanted to make it to the BBQ at David's House so we had told him that he had to be super good and do everything right the first time to get things moving a little faster. So as soon as we were checked in he ran out back, said hi to Nurse A and then went right in the room to do his work before she could even get there. It was cute! He can be so good and motivated when he wants to.

They gave him choice of room and he picked Jungle (shocker!). He put his stuff down and then was off to the playroom to play.

Dr. K came in to the playroom to talk to us and discuss how things were going and to examine him. It always amazes me how truly accommodating they are, and how they want to make the kid as comfortable as possible and will do whatever they can to make the kid happy. Dr. Cl had ordered Levi's thyroid labs to be done and I hadn't had a chance to do them at WD, so Dr. K agreed to do it with his labs today. It's so nice that they will run whatever is in the system for us.

Then Levi was off to playing some more.

He is really into wanting to cut lately. It's cute and is working on his fine motor skills so I generally have no problem with it. He had a blast today cutting the red paper.

Then he found the etch a sketch. I am not sure he has ever played with a real one before. He was really good at it, and had a blast doing it! He spent a long time drawing with it.

Then Nurse S came in to access his port. The access went really well as usual. He has started telling the nurses "Don't hurt me!" but will mostly sit till and let the do things.

Then we got the benadryl and tylenol going. Levi didn't want to watch a movie, he wanted to go back to the playroom. We are fine with that, so off we went, with his trusty pole.

Levi was playing doctor. He's really adorable with what he does. He mimics what the doctors and nurses do. And if you pay close enough attention its a great way to learn where Levi is having anxiety issues with anything as he will act it out with the dolls, and tell the not to be worried and that it doesn't hurt.

Levi wanted to go on a wagon ride to the snack cupboard. He wanted bear to ride with him. So off we headed to the snacks.

We arrived at the snack cupboard and this is where things took a rough turn. The benadryl had been working for just enough time and Levi couldn't cope at all. He started screaming! Bloody murder screaming! Yelling at us with attitude, not being able to make up his mind, and just screaming. It was awful. The nurses even came to check on us.

After attempting to reason with him I gave up and just sent him into the room. If he was just going to scream at least we could be in the room with the door closed to muffle the noise a little. I got him the snack he usually chooses, the movie he generally wants, and a warm blanket, and he finally settled in Jay's lap. He zoned a little to the movie and relaxed some. Benadryl is a blessing and a curse. I love that it helps protect him from a dangerous allergic reaction, but I HATE what it does to him. It doesn't make him sleep anymore, it just makes him angry. I am sure it makes him feel strange and he doesn't know how to process that, so he gets mad. But man do I absolutely despise the 30 minutes or so of Benadryl screams and anger.

Eventually he came out of it a little bit and had a snack and a drink and settled in to watch his movie.

Eventually he was feeling even better and didn't want to cuddle with daddy anymore, so he moved to the wagon.

And then he kicked daddy out of his chair so that him and Bear could have it.

Levi's plasma was ready and they got it started. Due to his weight going up again we have gone up in bag size a little bit more. Levi watched his movie for a few minutes and than asked if we could pause his movie so that we could go to the playroom. Jay and I looked at each other and said sure, and headed down there. We love that he likes to play and not just sit like a potato during infusions, but it also is stressful in the playroom because he doesn't remember that he has a pole and a line. But the only way for him to get better at it is to do it, so off we went.

 We got to the playroom and Levi wanted to read the body book, so Jay and him set down to read some of it.

There was another little boy in the playroom and Levi and him hit it off and were playing together. Henry's mom got out the play dough and Levi settled in to play too. Nurse S came in to get some things started for Henry and to bring Levi's labs. His counts today were 101, so its very good that we are here. We are high enough that one infusion is plenty, but in need of an infusion. The perfect spot for an infusion.

After the play dough Levi played doctor some more.

And then pushed the baby in the wheel chair. It was an interesting parade. Levi pushing the baby in the wheel chair and Jay pushing Levi's pole.

After the dolls it was time for a wagon ride. The hospital had gotten this new panda wagon that allows you to clamp the pole on to the back of it, and both boys had to try it out. It was super cute, and so much easier to steer then the other wagons and since it holds the pole makes it even better. We rode around for awhile.

Then we headed back to the room for a movie and some relaxing time. Eventually it turned in to tablet time as the end of the infusion got closer. Levi did really well with everything.

Close to the end of Levi's infusion Dr. K brought in one of the new doctors. Dr. V retired and Dr. C is retiring at the end of August so they are bringing two new doctors on staff. It will be interesting to get to know them. and for them to get to know Levi and his unusual case. Hopefully they will be as great as Dr. V, Dr. C, and Dr. K.

Once Levi was finally done we went to the playroom for a few minutes as just as they were finishing up with Levi the hospital went into lock down. It ended up being a drill, but they still follow all procedures, so I felt it made the most sense for us to just stay in clinic and wait it out.

Once the drill was done, we packed up our stuff and we were outta there.

Levi and bear led the way!

Thanks guys for everything. Maybe we can make it 2 months again! Summer is always our best time for good counts. The fall and winter are the worst with all the germs in school that go around. In the summer his counts stay up which is so nice. Hopefully since we are in the beginning of August and still have over a month of summer we will be able to make it longer again, as its so nice to have the break and give Levi's body a break from the constant plasma.