July 10-11 - David's house

July 10-11 - David's House

The drive to David's House was fairly uneventful. Levi had taken a good nap so he was wide awake for the drive. We started out by watching Smurfs and ended with PJ Masks. We stopped in Chichester for slushy's otherwise it was a straight thru drive, and for the first time in several visits the weather was great and the drive was easy!

We arrived and headed inside. Levi was a big boy carrying his own backpack! He wanted to stop and sniff all the flowers so it took us a minute to get in.

 We had our choice of pig or lion. Levi wouldn't make the choice so I choose Lion. We headed up to get settled in! Then went down to the kitchen for dinner where there were Taco's provided by Camp Walt Whitman. They were delicious! Levi ate a whole bunch! Taco's are always a winner of a meal for him. Thank you Camp Walt Whitman for a yummy dinner!

 After Levi was done eating Levi and Jay went outside to play while I cleaned up the table and then headed upstairs for a few minutes to unwind after the drive. The lion room overlooks the playground so I was able to watch them play!

After about 45 minutes the boys came in from outside. After they were done on the playground they had gone for a walk and picked wild flowers for me! It was so sweet!!! 

Levi asked for a little tablet time so I set my timer for 15 minutes and he played while Jay put the flowers in water. When the timer went off we headed down to the playroom to play. 

 Levi read some books. It's crazy what books he can remember when we only read them every 3 weeks. He can recite almost the entire book of several of the books at David's House. It blows my mind how he can do that. Here he is reading Pip and Posy getting almost every page right, and we don't own the book so he hasn't read it since our last visit to David's House! Then he asked me to read him a few other books so we did that!

 Then he was ready to be a crazy man and play with Gekko and Cat Boy that he had insisted we bring from home! It's a very fun and very active game for him.

 Of course he is always Gekko and I am always Cat Boy and Jay is never allowed to play! Gotta love routine games. He rolled out the blue yoga mat as a road for Gekko and Cat Boy to go on when they weren't zooming around the whole playroom. They even went up and down the slide several times. He had a blast so I am glad we brought them.

Then Levi played for a few minutes before we headed upstairs for snack time. 

Snack was a banana and animal crackers. Levi bounced between eating and playing at the train table. He still talks about how we brought the trains. Cracks me up! 

 Jay and I helped Kim put the food away! Good luck with surgery Kim! See you in a few weeks!

 Then we headed upstairs for bed. The central AC was not working in the house so our room upstairs was quite warm. But not unbearable with the fan on and the windows open (from the top only if you remember a much earlier David's House post where Levi thought it would be fun to almost go out thru a window!) I need to remember to bring two pairs of PJs for Levi, a warm pair and a cool pair! Thankfully the PJs I brought were ok, but he probably would have been more comfy without feet.

We put on PJs and read stories and then I headed out in the hallway to wait until he fell asleep. Jay came out after finishing his story around 9:25 and we waited outside. Levi did everything but fall asleep! He sang, he rolled, he asked for water, he did it all.

My view sitting outside the lion room waiting for Levi to fall asleep.

I poked my head in a few times and he was still awake!! Finally he got quiet and I thought he would be asleep soon if he wasn't already. I was chilling on my phone waiting a few more minutes before poking my head back in to make sure he was asleep when all of a sudden Levi was in the hallway with me! It was 9:50!!! 

 He couldn't tell me anything he wanted, and he made no noise getting to the hallway!! And he was definitely out of it as he couldn't complete a sentence! Jay went in and rubbed his back for awhile and finally at 10:15 he was asleep!!! I hate the nights the melatonin doesn't work! Drives me batty!

Jay and I headed downstairs for a little relaxing!

 I went back up around 11 and Levi was still out cold!

I climbed into bed and thankfully fell asleep fairly soon because it was not to be a great sleeping night. At 3am Levi was awake! Wide awake! I did everything I could to get him to fall back asleep. He was in his bed, our bed, rubbings, telling him to be quiet, more water, everything. At 5:15 he told me he had to go potty so out we went. I thought that was for sure the end of attempt of any sleep, but he went back in the room and climbed in his bed (he had been our bed solidly since 4am) and by 5:25 he was out cold again! He woke up for the day at 7:45. I gave him his tablet to play for a few while I woke up.

Then him and I headed downstairs for breakfast. We talked to Cathy for a bit about the weather and the lack of AC in the house. Then we had some breakfast. After breakfast we headed upstairs to get dressed and pack up our stuff. Since we would be at the hospital for quite awhile I couldn't take the flowers with me, so Levi took them down to Jaye and gave them to her on her desk. It made her smile!!

Then we were out the door and over to the hospital.

July 6 - Blood Work

July 6 - Blood Work

Blood work was super quick and easy today picking out a band-aid was not!! The process of picking out his band-aid was probably almost 10 minutes including a trip to the bathroom in the middle. It was AWFUL! We hadn't had the greatest morning either so I was stressed with very little patience so I know that didn't help! Once he finally settled on his band-aid he was up in the chair with his little arm out. The stick went super quick and he was off to the treasure box. The treasure box was FULL!! Levi loved going through everything and settled on a spider man top set. He gave his hugs and high fives and we were out the door!!

P told us that she would not be in next Thursday (7/13) so we will probably move blood work to Friday (7/14).

Drove Levi to the meeting spot with the Nanny. They were headed to the splashpad so I know he is going to have a blast today!!

Levi got to be the first one on the "new deck!"

Counts came in late morning at 204. Not a bad number at all with an infusion on Tuesday!

June 29 - Blood Work

June 29 - Blood Work

Blood work went super well today! We didn't get home from Thomas Land last night until 10pm, and Levi didn't fall asleep in the car, so we let him sleep in this morning. We got to blood work around 9:30 instead of 8:30. There are multiple people now who look for Levi and try to plan there lab work visits around his visits and they were all very disappointed by our late arrival this morning. I guess I didn't realize just how many peoples days we make on Thursday mornings!!

The blood draw went super easy and we headed over to the treasure box. The treasure box was getting fairly low so I thought we were going to end up with some stretchy guys from the bottom (I despise those things as they end up stuck every where in my car and in Levi's car seat) but he decided to pick a puzzle instead. It was a 50 piece puzzle so above his head, but I'd rather help him put it together then get more of the sticky things.

Levi dragged P out into the waiting room with us to show her that his animal book is missing. He was very upset by it. So if anyone has a copy of this book: 

And you would like to make Levi's day, please donate it to the WD Lab.

Then we headed off to the 99 to meet Naomi.

Counts came in today at 242! A great number. We were looking at his counts today and they have stayed relatively flat for the last few months. Some up and down, but no crazy peaks and no crazy drops! It's been nice!! I really hope it stays that way for awhile, been no stress for me!!!

June 22 - Blood Work

June 22 - Blood Work

We got to blood work today and there was no line no waiting! Levi was a little upset that we didn't have time to read his animal book, but it worked out well that we didn't have time because his animal book wasn't there.

We got inside and Levi started picking out a band-aid. He picked Shopkins and then wanted to find an ice cream one. We got the one he picked opened up and it didn't have an ice cream on it. I told him that we would be ok and tried to make him happy but P got down on the floor with him to go through the box and try to find an ice cream shopkin. They ended up opening 3 band-aids and still didn't find an ice cream one. Levi settled on one of them, and then P gave him the whole box and told him to take it home to find the ice cream one!

The blood draw itself went great as usual and Levi was off to the treasure box. He asked P for a "softy soft" and a "tighty tight" (a cotton ball and a tourniquet), she made him a whole little goody bag of them and the box of band-aids. It was very sweet and Levi was so excited. He picked a blue jump rope from the treasure box. He said "Look Mommy a boy rope!! The one at home is a girl rope!!" (It is Pink and Purple but we don't usually talk about boy and girl colors at our house) He was very excited to have a blue one. As we were headed out P gave Levi 6 penny's to make wishes in the fountain! He was so excited! So off we headed to the fountain! He loved throwing them in!

Levi asked if we could get a donut and I said sure. So off we headed to the donut lady. He was very polite and asked Please!! The donut lady is very impressed with his politeness and always gets so excited when we come by!

Off we headed to meet Naomi at 99!

Counts came in a little while later at 220! A decent number post infusion.

Next Plan: Blood work again next week, June 29.

June 20 - Infusion #29

June 20 - Infusion #29

We got over to the hospital and Levi requested that we park on the purple level. I told him we would see. By the time we found a parking spot we were on the yellow floor and since the purple floor is next I said sure and up we headed to Purple. Levi was very excited. Super Levi carried in crayon and his tablet backpack!! He is such a big boy now!

 We got to the elevators and Levi pushed the button. The first elevator that came we went in too and the door wouldn't close enough for it to move. It was freaking me out a little so we got out and waited for the elevator to come. Once we got into it Levi said he was "too tired" to stand up! So he set down for the ride.

 We got checked in and headed out back. They gave us the choice of the fish or jungle room and Levi, as expected, picked the jungle room. We set our stuff down and Levi took off for the play room. He was very excited to play with the toys.

 It wasn't long before Nurse T was ready for us and we headed to the jungle room. We got his Benadryl started and Levi asked for a movie. He picked planes and we got it started. He settled in with a snack and a drink!

Crayon looks excited!

 Dr. V came in to talk to us and looked at Levi. He checked out his swollen ear and said it looked fine and was probably just a black fly bite. He checked out the rest of him and everything looked good. We talked for a minute about the fact that we have pulled Levi out of school for the summer and that now he is home, but that he will be back with other kids (and new germs) as soon as a slot opens. He marked that in his chart as we expect his numbers to be a little more wonky once we are with other kids and germs more often, where as right now he is home and not exposed to much. Then he stood and watched Planes with Levi for a few minutes. Levi always gets excited when Dr. V watches his movie with him. Dr. V once again said that some day he would need to actually watch the entire movie as he has only seen small pieces of it with Levi (we don't think anyone else watches it as many many times we have put it back in the DVD player 3 weeks later and it has been at the exact same place that we turned it off at the last time we watched it).

Not much longer and Nurse T came in to get his plasma started. She said that the blood bank hunted and they gave us the smallest bag that they could, but it is still way too large for Levi! So for the first time in a LONG time, possibly over a year, we will not be finishing the bag today. Levi needs 240mL plus or minus a few and the bag was 283mL.

Once we got the plasma started we settled in for the long wait. Levi wanted his tablet so he set and played with that for awhile. He also told us that the room was too bright and requested that they bring in the small lamp for him so of course they did for him, so we set in the shadowy light for most of the day.

 Then it was time for lunch. We heated up the left over pizza and Jay headed to the Cafeteria for salad, fruit, and dessert. With the voucher they give us lunch was almost free! Thanks for always providing us that! Makes our lives a little easier. Levi set and ate. Then he wanted a new movie so we settled in with Ratatouie. Levi has never seen it before and he seemed ok with it.

The end of the infusion went quick as we didn't need to finish the line (the part that always seems to take the longest!) as we ended the infusion without finishing the bag.

The whole day seemed to go super fast. Before long it was time to get dressed. Jay and Levi were being super silly at the end!

 Counts came in at some point during the day at 203, so a great number!!

Levi was off to the playroom for his 5 minutes of playtime! He ran with the shopping cart one time around the loop and blew bubbles.

Then we were on our way home! Levi did great as per usual! He really likes coming here. A few fun quotes of the day from Levi:
"Are we going to Dr. V's house?"
"I Love Dr. V! He's soooo nice!"
"Ok  T I'll come with you, but no pokey things! I don't like the pokey thing!" - all while holding his little finger up!
"No No No! I said no pokey things!" - while holding up and shaking his whole little hand!

The drive home was loud as Levi didn't sleep! We picked up Jay's car in Concord since we had left it there and headed home separate, so the second hour of my drive was quiet as Levi went home in "Daddy's race car!"