April 13 - Blood Work

April 13 - Blood Work

This morning started out like most blood work mornings do. A melt down about "I don't want to go to school!!!" Then I say "It's a Paula morning!!" and Levi says "Oh! You're Right! Let's get dressed!"

We got to the lab and there was no waiting. Levi stopped at his fountain to say hi to it. Then we headed over to the lab. We went right in and the draw went smooth as always!

Before we knew it we were at the treasure box. Levi struggled to decide what he wanted to pick today and ended up picking out 5 little jelly guys. They were in the bottom of the treasure box and have been there forever, so none of us were upset that he picked 5 of them. Of course as soon as we got to the car he had to have them all opened! That part was definitely a pain!

It wasn't long before numbers came in. Counts today were 253! A huge drop from last weeks 379 but still an amazing number especially since we are heading to David's House tonight for an infusion tomorrow.

April 6 - Blood Work

April 6 - Blood Work

Levi slept in today!!!! For the first time in well over a month!!! I wasn't going to stop it, so we didn't even get up until 7:50, so were definitely running late. But every once in awhile it's worth it and needed!

When we got to the lab P was just finishing with a lady and she heard Levi's voice and started telling the lady about how here buddy was here and how good he was. She said "I thought you guys had forgot about me today! Is everything ok?!" I love how much she loves/cares about him.

Levi went right in and picked out a band-aid today. Today he picked emoticons and it happened to have 4 smiley faces that were crying or laugh crying, but of course to a toddler those all look like crying. He was ok with it, and told the smiley faces that everything is ok and petted them. Then he wanted to be a big helper to P so she let him be here handy helper. He held the tubes for her until she was ready for them, handed them over once she was ready, and then held the cotton ball for her when she pulled out the needle. He was grinning from ear to ear that she was letting him help her and she was making a huge deal of it which was just making his day even more!

Once the draw was done we headed for the treasure box. Levi picked out a basket ball hoop and basket ball. He was super excited about it. He gave his hugs and high fives and headed straight for his water fountain.

 Then he asked if he could get a donut. I took a quick glance at the time and realized that he had already missed breakfast at school so I said sure. We headed to the case. This is him looking to see how many sprinkle donuts there are.

 Once we had bought the donut we headed for the car. Levi started eating his donut, like truly biting and eating it, not just licking off the frosting and sprinkles.

 When we got to school I was very surprised to see that this was his plate!! When I opened his door after parking he was putting the last bite in his mouth! It is only a 7 minute drive from the hospital to school! I was shocked! He must have truly been hungry.

After school drop off I headed to work. By 11:30 when there was still no labs I realized that they weren't coming in again today. Jay called the lab and got another person who was very aware of Levi's file and again agreed to send them over right away. I will have to check in with P next time to see why things aren't coming through.

Levi's counts today were 379!!! Holy Cow!! We haven't seen numbers like this in a LONG time. It's crazy!!!!

Next Plan: Blood work next Thursday!

April 3 - Blood Work

April 3 - Blood Work

Since Levi's count was still under 150 we did blood work again this morning. Mr. Levi decided that very early in the morning was a good idea to wake up, so here is the very tired little cutie on the way to the lab.

We got to the lab and there was no line no waiting! You would think this would be great, as when we have to wait Levi asks every time "is it my turn yet?" and "can i go in?", but today the fact that there was no line or waiting was not a good thing! We had a total and complete melt down. Threw ourselves on the floor at the door to the lab and wouldn't go in! He wanted there to be a wait. When I could finally get him to calm down and explain why he wanted there to be a wait it was because he wanted to read his animal sounds book! Well at least there was a reason!

Once we got into the lab everything went well as usual. P was ready for Mr. Levi and the draw was quick and easy. Levi picked his band-aid and once again picked a fishy band-aid. We talked about how there were only a few left. P overheard us and after he got his she hid the box so that they would only be able to be used for him. We are now down to 2 in the box! Please everyone keep an eye out for them.

Once we were done Levi was off and running to the treasure box. He dug around all the big stuff and picked a yellow kazoo from the bottom. He was super excited about it!

Levi gave his hugs and kisses and for the first time ever Levi took off towards the front door of the hospital and not towards "his" fountain! I was only a few steps behind him today so it wasn't as bad as it could have been. But we had a discussion about it and I carried Levi out of the hospital with him crying because he didn't get to see his fountain and didn't get a donut.

We settled down once we got to the car, and had a good if not tired drive to school.

By 10:00 counts still hadn't come in. By 10:30 we figured they weren't going to come in, so Jay called the lab. He got a hold of someone who knew Levi's name and that we were supposed to get the labs faxed to us and she sent them over right away.

Levi's counts today were 316!!! A 176 point jump since Thursday! Wow! We haven't seen numbers like that since early 2016!!

Next plan: Blood Work again on Thursday just to get us back on schedule!

March 30 - Blood Work

March 30 - Blood Work

Besides not sleeping great, and being awake super early Levi has had a pretty good two days, so hoping that his numbers have gone up. There are no new bruises on him, and if his numbers had continued to go down we should be starting to see spotting. So heres hoping!

We got to the lab and it was completely empty so I decided it was a great day to register. We went in to register his standing order. He did a very good job waiting. He always asks if he can color on the signing pads. It's really cute. Now that we have registered again we are all set for another year with his CBC standing order.

We went over to the lab and Levi was very excited to see P. We headed right in to pick out his band-aid. He picked his fishy band-aid again. There are only about 4 left. If you ever happen to see a box of band-aids that looks like this I will happily reimburse you for them. They were originally from Reny's so I am not holding my breath that we will ever find them!

 Levi climbed up in the chair and grabbed two "softy's" aka cotten balls and was playing with them while he was trying to open his band-aid. We had a few extra minutes of play waiting for P as she had to do all new paperwork and get everything set up for the year.

 Once the blood draw started it went as smooth as ever. P really is a miracle worker in that department. Levi headed to the treasure box. It had been re-stocked since we were there last. Levi was very excited about all the new things. There were 3 robots. 2 red ones and a yellow one. He was very excited about them. He grabbed both a yellow and red one and asked if he could have two. I told him that he needed to pick, he picked the yellow one. P was listening in as she was sending his blood down to the lab and waiting for her hug and I saw her swoop in and grab a red one and put him up on the shelf. I whispered "thank you" and she said " of course! I don't want it to disappear!" She is so good to us. Levi gave his hugs and was out the door.

As soon as we left the lab Levi was asking for his robot to be opened. I said sure and we started playing with him.

 We headed out to the car. Levi did a great job of holding my hand and his robots hand!

 When we got to the car I was seriously unimpressed! As you can see the entire row of the garage is empty except for 1 other car! Plenty of open spots.

 And this dude parks right on the yellow line next to me! Seriously!! Getting Levi in to his car seat was a trick. Thankfully he can climb in himself now, so that makes it a little easier! But dude! Park in another spot! Or at least completely in your spot!

I dropped Levi off at Nursery School and started the wait for numbers. I was hoping they would come in early today so that I didn't have to stress about them, and my hopes were answered! They came in pretty quickly! And the count was 140!!!! YAY!!! A 60 point increase since his infusion on Tuesday! So very happy!! Thank you to whoever donated that bag of plasma! You were healthy and it helped my little guy! :)

Next Plan: We will do blood work again on Monday just to insure that they are continuing to rise as expected, we are happiest with his numbers over 150, so want to make sure they get there!

March 28 - Infusion #25

March 28 - Infusion #25

We got over to the hospital and got checked in. Levi ran right to the Jungle room. Then it was time to do work with Nurse A. He was very active and did not want to sit still at all. Blood pressure took 4 tries before it was good. Then we were off to the playroom to play. Levi was all over the place and making a giant mess. But he was having fun.

 Dr. V came in to the playroom to check out Levi. We talked about his past three weeks and how things were going. He took a look at him and thought that he looked great. He even commented on how good his rash/eczema was looking.

Then a student child life specialist came in to the playroom all excited to play with Levi. The two of them headed around the loop in a race, I think Levi definitely had the advantage since he had the shopping cart and he gave her the baby stroller. It was super cute. While they were running around Jay and I talked for a minute and determined that it was for the best for him to leave. He wasn't feeling good and wasn't going to be any help at the infusion, so he should just go get some sleep so hopefully he could feel better so that I could go to class after we got home.

After Jay left Levi asked to go for a ride in the wagon and to go get his snack. He loves to store it in the wagons trunk compartment. So off we went to the snack cupboard. Then Nurse T was ready for us, so we headed into the Jungle room to get accessed and start the day. Levi did a great job being accessed. The Bennadryl was started and Levi and I settled in. Levi wanted to watch Planes!

 After a few minutes of Planes a student doctor came in and wanted to hear about USS, Levi's life with it, and how it came about. It was fun to tell our story again! :) Levi was being a crazy man and climbing all over me and the ground and the chair and asking for everything except sitting still, so the story took longer to tell then usual, but she had lots of questions and seemed interested.

Nurse T and Nurse K came in to start his plasma. And then Levi and I settled in for some Mommy and Levi time. We had a snack, watched, planes, and cuddled.

After Planes was over we switched to Trolls. We also switched to the low light today thinking that Levi might sleep since he had been awake since 5am. But that was not to be the case. He did everything in his power to keep himself awake.

Part of the way through Trolls Dr. V and the student doctor came in together. That's not usually a good thing. He had Levi's labs and shockingly to all of us, Levi's platelet count was at 80! We haven't seen a number that low since we were in-patient in early 2016! I talked to Dr. V for a few minutes and he was as confused as I was. We said it was a lucky timing for an infusion, because who knows what it would be by Thursday if we hadn't gotten an infusion. He also stressed that he wanted us to do labs on Thursday to make sure the infusion had done what it is supposed to!

After that Levi and I settled in for cuddles. With about 15 minutes left of the infusion Jay came wondering in from the car. Said he was cold. I sent him down to the cafe to get lunch which we could eat in the car on the way home. Levi and I finished the infusion. Then we had our 5 minutes of free play in the play room before heading home.

All in all the day went well. A shocking number and the first time I solo did an infusion, but it went well! Thank you to the nurses who checked on me a little more then normal, and were very understanding when I had to push the call button instead of just going to get them when his pump needed assistance. Definitely is nice to know that I could do an infusion completely by myself if need be and that the nurses are so supportive! Thank you!!

We headed home, hoping not to be back again this week! Please work infusion! Please make Levi's numbers go up!!