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.

August 9-11 - David's House

August 9-11 - David's House

We got up to David's House a little later then planned. Between getting out of work later then planned, an accident re-routing traffic off of route 11 on the way home, having to pack, and then stopping at DQ for food it was late when we got there. But thankfully it is still summer enough to have some daylight when we got there.

The parking lot was packed and we had to park in the lower lot and then walk up the hill.

We got all checked in to dog, and then headed out to play. Levi played on the playground for a bit and then Jay and Levi went for a walk in the wagon.

Then we came in for snack before bed. Levi picked an apple for a snack. He ate most of it.

Then we headed into the living room to play for a few minutes and watch the opening of big brother. Levi likes the water opening the best, so he watched that and then to the first commercial and then headed up the stairs to bed.

He was tired and it didn't take long before he was out cold!

Levi was up at 5:30 the next morning. I kept him as quiet as I could in the room until 6am and then we headed downstairs to the playroom to play.

At 6:45 Levi and I headed upstairs for breakfast. There was lots and lots of food this time and Levi ate applesauce and half a bagel with peanut butter.

Then we headed upstairs to wake up Jay, get dressed and head to the hospital.

After his infusion (see post on infusion #44) we headed back to the house. There had been signs about a BBQ and Levi really wanted to make it. We got there just as they were packing up, but we managed to snag some food and cake and eat in the ice-cream room. Levi was so excited to eat the BBQ food!

Thank you very much to TSS for providing the BBQ and doing all the work on the house. Levi will be grateful for everything when he is older, sorry he was sad that you painted the playground and made it so he couldn't use it for the rest of our trip.

After the BBQ we headed up for nap time. Levi definitely needed it.

After nap we talked about what we wanted to do as a family and decided to go to the lake. We had a blast! Then we found dinner at Three Tomatoes and a playground to play on and get some energy out.

Then we headed back to David's House and Levi decided he needed a snack. He picked a donut!

Then it was off to bed for night 2. Levi was super excited that we got to spend 2 nights at David's House but only had to go to the hospital once.

Saturday morning he slept in a little for Jay, but they were still downstairs by 6:30. I slept in a little, as it was Saturday, and then headed down to see what they were up to. It looked like they were having lots of fun downstairs.

Jay found a cute little diner to go to for breakfast and then we were heading to the Montshire Museum. We didn't rush around, but didn't lounge either, and packed up our stuff and headed out.

Thanks for everything as always David's House!! It was so great to see you! We will be back!!

August 9 - Blood Work

August 9 - Blood Work

Good Morning. Today is the day of answers. We will either have gone back up and spending more time in limbo, or we will have dropped enough to be headed to Lebanon tonight. We got to the lab and there was a bit of a wait. So P brought the tablet out to the waiting room for Levi to play on while he waited.

Then we were headed in to the lab. Levi went right for his band-aid.

The draw was over before we knew it and Levi was off to the treasure box. P had gone shopping since Monday and before Levi could get the treasure box open she gave him the bags to choose from so that he could be the first to chose from them. There was a purple mermaid and he picked that saying that it was for me. Since he said it was for me, P let him pick another thing too and he picked the blue mermaid.

Then since it was Thursday we were off to the donut lady!

He was super excited to eat his donut in the car this morning.

Counts came in after 24 minutes today. Counts were 114. Well I guess that answers our question. We will be heading to Lebanon tonight. We talked to his doctor and got an appointment for tomorrow at 8am! It's early, but they are booked like crazy tomorrow so it was either 8am or 11am. Jay and I talked about our weekend plans and decided to see if we could get a room for 2 nights instead of 1 and spend the time up there doing something fun for Family Fun Month.

August 6 - Blood Work

August 6 - Blood Work

Happy Monday!!! Super Levi Paw Patrol was up and running fast this morning. We got to the lab and Levi wanted to check out his fountain.

We got over to the lab and there was a short wait. P had a patient. AM didn't have a patient but she has learned over the last month or so that P and Levi have an amazing relationship and not to mess with that unless you absolutely have too.

As soon as P was ready Levi went running in to pick out his bandaid.

Then he climbed up into the chair and started playing on the tablet.

The draw went quick and then we were off to the treasure box. He crouched on the side of the treasure box which isn't what he normally does. He picked an orange fox. He looked up at me and said "I am picking this for Kyle!" and stumbled over in the process. All of the sudden he was crying/screaming. I was shocked. He never cries! And he falls all the time. I went over to him and he was holding his leg, I finally got him to stand up and there was a huge scrape/scratch on his leg and it was bleeding. We got him over to P's chair again and got it washed and covered with a bandage.

Levi was picking out his sticker and P brought over 3 dollars for him to go get a donut even though it was Monday because she felt bad that he got hurt. She also was on the phone to maintenance before we had even left to get them to come up and do something about the kick boards on the wall as it was sharp. Surprising in a way that no kid had gotten hurt before, but most don't go running to the treasure box either I am sure!

Levi was super excited about his money!!

So we headed over to the donut lady!

Once we got in the car Levi really wanted his donut but he wanted to play with Kyle's fox too! It was really cute and sweet!

Once I got the fox in the seat he grabbed his donut and was chowing down happily!

Counts came in after 30 minutes, a little longer then yesterday but with everything that happened post draw it's not surprising. His count was 145, so a drop of 22 since last week. Still a pretty decent number but definitely dropping. We are going to hold off on going up for an infusion until the end of the week, gonna wait and see what his counts are on Thursday, since we are right near 150 it could go either way up or down, so we shall see on Thursday.

August 2 - Blood Work

August 2 - Blood Work

Good Morning! Levi wanted to show off his new shirt from Grammie today! He went running right to the door for pictures this morning. I have taught him well!!

Then we were off to the car for the long drive to the hospital. We got to the lab and there was a short wait, so Levi found a newspaper to look at and settled in to wait.

He was being a goofball after he read his paper!! He was definitely in a good mood this morning.

Once we headed in for blood work it was super quick and easy as always. He was off to the treasure box before I knew it. It took him a few minutes to pick what he wanted but he suddenly settled on a new green pencil.

Then since it was Thursday we were off to the donut lady! He had fun looking at the cases today while we waited in line.

We got stuck behind the weekly meeting today so it was a long wait for the donuts. The nurses and doctors are all super nice to him but they never let him go ahead of them even though it's like a group of 15 all getting special drinks, and they know all he wants is a sprinkle donut.

But eventually we got his donut and were off to school!

Counts came in today after just 21 minutes!! Was a great day! Counts were 167. No change since Monday!! That has never happened before. I wouldn't have believed it if some of the other numbers hadn't changed (LDH, WBC, RBC, etc). Still a decent number, but definitely has us all on our toes wondering when it's gonna drop below 150 and have us in Lebanon.