April 17-18 - David's House

April 17-18 - David's House

Levi had swim lessons after school today and since his last counts were still over 100 we allow him to participate in all regularly scheduled activities. We did notice quite a few bruises while at swim lessons and even a couple of new ones came, plus he was very tired and emotional so he clearly wasn't feeling great, but he was so excited to get to participate in both of his lessons still.

We got on the road to head to David's House around 6:30, about 90 minutes later then we usually get on the road. It was definitely going to be a long drive. We stopped at McDonalds on the way up and then just got their as soon as we could. David's House rules request that you arrive prior to 9:00. We figured we should make that, but it was definitely later then our normal night.

The drive was fairly quiet and easy. We switched the movie for Levi several times until we finally found one that he would watch and hold his attention. Of course, much to Jay's dislike, it was a buddies movie. But Levi loves those little puppies!!

We arrived at David's House around 8:30 and got signed in to the Pig room. Levi was super excited. Jay and I had talked on the way up that there was no way we could make him to straight to bed once we got there, so we were going to give him until 9:00 to play, then we would do bedtime meds. Levi was pretty happy about that and we were off to the playroom to play before we could barely even talk our shoes off.

Levi and his bunnies went straight to the slide. Those bunnies can really slide!

Jay was playing pinchy crab under the slide and making Levi giggle a ton! It was cute!

Then Levi decided it was time to go grocery shopping. He went around the whole place finding lots of things to buy.

He purchased some odd combinations of food on his shopping trip. Everything from Tuna to Canned corn to milk and cereal and a few cookies thrown in for good measure. He was having a blast though!

After he was done shopping it was time to cook. He mixed everything together and made some interesting stews?! or casseroles?!

Once it was done cooking he made a bowl for each of us and we all ate his yummy food.

After that it was time for bedtime meds and then we headed upstairs for a real snack. At first Levi and green bunny had a cookie. They only ate a few bites of it before deciding that a cookie wasn't really there style.

So Levi helped himself to an apple. It still shocks me sometimes when he can just help himself to things. Since when can he reach the counter! He needs to stay little.

He and Purple Bunny ate some of his apple.

After they had had their fill of apple it was time to head up to bed. We picked out stories and read them upstairs after putting on PJs. Levi picked his bed in the pig room and assigned out the others to Jay and I. He picked an odd arrangement in the pig room this time, not one we have ever done before. Then we said good night and Jay and I headed into the hallway for our wait and see portion of the evening. It didn't take long before the room was really quiet and Levi and all of his fellas (I think he had brought 7 in total to David's House!) were sound asleep!

Jay and I headed down for a little relaxing and some ice-cream. Thanks to whoever cooked dinner tonight and brought the stuff for ice cream sundaes. They were yummy. Jay and I didn't stay up too late as we know that mornings at David's House come far earlier then any morning should. Good night all!

The next morning Levi did something he has never done at David's House! He woke up Jay. Of course I woke up when he got up and was fully prepared for the "Mommy! Mommy! It's Morning!!" that usually comes. But as I slowly came to realize that it wasn't going to come, I decided that I had no strong desire to be up at 5:50am and if Jay was going to get up with him and he wasn't going to ask for me, then hey I would enjoy an extra hour of sleep!

A little after 7am I wondered downstairs to see how Jay and Levi were doing. I was expecting to find them in the living room watching early morning cartoons, so that Jay could be half asleep, but the living room was empty. I wandered downstairs to the playroom and say Levi happily playing and Jay curled up on the floor relaxing. 

As soon as Levi saw me he wanted to play with me and I said sure. Our appointment wasn't until 9am so we had some time to kill at David's House before having to head over to the hospital. Levi and I found a new bug game and I made up some rules since there weren't any in the box. Levi had a blast and easily beat me. He is a very lucky boy when it comes to luck games. He always happens to draw the right cards or push the button at the right time, sometimes I don't know how he does it.

After our game was over I headed upstairs for breakfast and Jay came with. Levi said he wasn't hungry so for the first time ever we allowed him to stay in the playroom while we went up to eat. We could hear him downstairs and knew that he wouldn't stay down there by himself for long. But he stayed down for 5 minutes or so and happily played. Then he decided that he wanted to eat again so he came up for second breakfast. A lady joined us for breakfast who was very talkative. This made Levi very antsy and he really didn't eat much, but took a few bites or so. Since he eats pretty much non-stop once he is connected we don't worry a ton on if he eats breakfast or not.

After that it was time to head upstairs, get dressed and packed up, say good bye to all our David's House friends and head over to the hospital. As always we love coming and we know that we will be back!

April 16 - Blood Work

April 16 - Blood Work

Happy Monday! It's icy and rainy and cold here. Took about 15 minutes to chip off both me and Jay's cars this morning with all the ice that was on them. Then the drive to the hospital took a little longer then normal as the roads were slushy and some places of black ice along with some nasty ice coming down and pelting the car. I am so ready for winter to be over! That does say April 16th right, not January 16th! Ugh. Thankfully Levi watched PJ Masks the whole way to the hospital so I was able to concentrate on driving and the road conditions and the ice flying off of everyone's cars.

We got to the hospital and went right to the lab. There was a short wait as another nurse was in with P getting everything all set. Levi took a super cute pic this morning and then started playing the ice cream game on my phone.

 He had barely started playing when P called him in and he went in and climbed in the chair. We had to remind him to get his band-aid. He was very excited to see the pee cup on top of the band-aid cabinet, and we had to both remind him not to touch it. But he was super excited about it. He asked if he got to pee in a cup too. Finally we got him to pick a band-aid.

 The lab draw went great as always. Levi was then off to pick a sticker! He picked batman today, but was very bummed that super man wasn't an option. And then he was off to the treasure box. I was showing P some pictures of the green bunny from last week (the bunny has been a staple at our dining room table over the weekend, needing to eat with us including having his own bowl) and Levi opened the treasure box and saw that there were other bunny's in there. He looked at me and said "Mommy I don't have a bunny family, just one bunny" so he decided to take the purple bunny today, and that on Thursday he is going to take the blue bunny, and Monday the pink bunny. Hopefully the bunnies will hang out for awhile. I reminded Levi that someone else might choose a bunny, but he said "Mommy they are a family. They will stick together!"

Then we were off to the fountain. Levi was a little bummed that it is still only flowing water from the bottom, but I reminded him that we had talked to someone on the maintenance staff last week who had told us that there is a crack in the tube bringing the water to the top and that they are waiting on a part for it, so they are working to fix it. Once I reminded him of that he seemed happy again.

 Then he was showing Mommy Bunny the fountain and talking about Green Bunny and asking her if she missed him and such. It was super cute.

 Then we were off to the car to head to school. Mommy Bunny was sad because apparently she can only talk with medicine otherwise she turns into regular again. Thankfully I had the needed medicine so Mommy bunny was able to keep talking.

Counts came in early today around 9:25! His count had dropped to 132 and his WBC has gone up. Not sure what is causing this as he seems fine and isn't showing any sickness issues but who knows what is going on in his little body. We have had some pretty serious drops over the past week or so, so I am expecting that trend to continue and figure we will be under the 100 level by Thursday and therefore be at CHaD on Friday, but we can hope that doesn't happen!

Next Steps: We will do blood work again on Thursday unless we see anything prior to then.

UPDATE: I got back to my desk (and phone) after writing this blog post during a work meeting to several voicemails. Levi's doctor doesn't want to wait for more blood work on Thursday. She gave us the option to come either Tuesday at 9 or Wednesday at 9 for an infusion. We chose Wednesday at 9 so that Levi can still go to swim class on Tuesday (we don't pull him out of activities unless his count is under 100). So we will be headed to David's House on Tuesday after his swim classes for an infusion Wednesday morning at 9am!

April 12 - Blood Work

April 12 - Blood Work

Happy Thursday! Nope I didn't miss a blog post, we missed a blood work. Due to Levi sleeping in crazy late on Monday and me having a mandatory Monday morning meeting at work we ended up missing Monday and since his counts have been over 200 we determined that we didn't need to come in on Tuesday to make up for it. So here we are on Thursday! When I told Levi on Monday that we were not going to blood work he had a full on melt down. You would think I had just told the kid that he no longer got to go to Disney World. It was awful. Screaming, Crying real tears, so upset and hurt. It was like I broke his heart that we weren't going to blood work. I felt bad!! Only 3 year old I know that is upset that he isn't going to get stuck with a needle. :(

We got to the lab and there was a short wait. One person in the lab and one person waiting to do a drop off so we had just enough time to take a few pictures and start up a game before it was time for Levi to head in. He was being silly with the pictures this morning!

Note: We have moved to our spring jacket!! It is finally nice out here in NH. 

 We headed in and Levi picked out his band-aid. It took him a few minutes to decide but he landed on Star Wars. Then he started playing on the tablet.

 The blood draw went smooth as always. P is really good to him. She was very worried about where we were on Monday and had made the assumption that we had headed to Lebanon. Thankfully we hadn't, but I felt bad that she had worried about him when all we had done was sleep in! I gave her some contact info so that she can contact me if she is worried about Levi. When the draw was done Levi was bleeding pretty bad. It randomly happens, but once in a while the little guy just won't stop bleeding. And to the best of my knowledge there is no correlation between how much he bleeds and what his counts are, so it's just one of those random things that happens.

After the draw was done. P had something new to show Levi. Child Life Services had ordered her a sticker container!! Levi was super excited about it.

 He was a little bummed that the Paw Patrol stickers don't have Rocky. He unrolled half the roll looking for him, not realizing that the stickers are a pattern. He settled on a Minnie and Daisy sticker and was pretty excited to put it right on his shirt!

 Then we were off to the treasure box. Levi was digging around when I saw a green bunny. I asked him if he had seen it and as soon as he did he gave him a big hug and was all about the green bunny.

 I had bribed Levi that morning with donut money if he got ready without any argument. Not only did he do all of his steps with no complaint he did it in under 19 minutes! (His timer is set at 27 minutes!) so he definitely earned that $1.25. We headed over to the donut lady and there was a long line. On Thursday mornings there is a doctor that brings his entire staff down and buys them coffee. I always try not to get stuck behind them because it can be quite a wait, but of course I had no choice today. Levi was good waiting in line. He introduced green bunny to the giraffe. Bunny was scared of the giraffe because he was so small and the giraffe was so big. Levi comforted the bunny and told him not to be scared and that it was ok. It was the cutest thing ever.

 Finally we made it to the glass case and Levi and bunny were looking at the donuts and hugging. It was adorable.

 Once it was our turn, Levi ordered his donut, gave a big hug to the Donut Lady, and paid for his donut. All while using his pleases and thank you's! He is such a sweetie.

Then we were off to school. Levi ate his whole donut on the way to school.

 Well he did share with bunny. Bunny is a hungry little guy and likes to eat with all of us!

Counts came in a little later. His count today was 182. Still a great number but a 50+ point drop in a week for really no reason. He doesn't have any random bruising and the little cold he had is now gone and has been gone, so not sure where the drop came from. Hopefully we will level out here and not continue to drop.

Next plan: Blood work again on Monday. :)

April 5 - Blood Work

April 5 - Blood Work

Good Morning! What a morning it's been! Levi has been much better today then yesterday, but man I am exhausted. And this cold that both Levi and I seem to have is wiping the energy out of both of us!

P was on top of things this morning and the blood draw went super quick and easy! I am so appreciative when that happens and so glad that she is good at what she does! Before I could barely even blink today we were off and running to the treasure box.

 He picked the rubiks cube (or magic cube it's called) and was super excited. I am sure at some point he will mess it up and be upset and I will be watching you tube videos on how to fix it, because I am awful at them!

 Since it's Thursday and overall we have had a good week we were off to the donut lady after P. He gave her a hug and handed over his money. I only had 2 1 dollar bills today so we talked about change and what that means and he was pretty excited to have 3 moneys back from it.

Then we were off to school with him eating his donut in the car. He ate the whole thing before we got off the highway, which is only about 10 minutes! He had told me he was hungry and clearly he wasn't kidding.

Counts took a little while to come in today, was around 10:30 when they finally made an appearance. But they were good at 236! I am very glad that this cold isn't taking him down at all!

Next steps: Have a great weekend!! And do blood work again on Monday!

April 2 - Blood Work

April 2 - Blood Work

Happy Monday!!! I hope you all had a great Easter! I know we did! This picture is second Easter Bunny basket and egg hunt at our house! It was a busy, but fun weekend. We calculated that Levi found, opened, and enjoyed 162 eggs between the 4 egg hunts we did this year!! It was a blast!

But we are all dragging this morning!! We are tired!! We got to the lab around 8 and Levi went right in. He set like this for almost 5 minutes. He just couldn't pick a band-aid.

 Finally I picked for him and he climbed up in the chair. P had the tablet all ready for him and he started playing wild kratts, the game was exactly where it had been last time we played. I am not sure how to get him past where he is, so I convinced him to change to something else. I think P would have tried to help him play and not done the blood draw, but I said something like "we gotta do this so we can get to school!" So he switched to something else. I swear that tablet is a blessing and a curse at the same time!

The draw itself went great as always! Then it was off to the treasure box and once again we couldn't decide what we wanted. He kept picking something and I would be like "awesome choice" and he would say "no, I want something else" finally I told him he had to pick and he picked one of the cars that Grammie had donated to the treasure box for the first time. Of course not the bus that I think is super cool, or any of the green cars that Grammie picked out specifically with him in mind, nope he picked the brown and copper colored race car!!

 Then we were off to the car so that we could head to school. Levi played with his car the whole drive to school so that was fun!

Counts came in at 9:40. He has a slight cold/runny nose/toddler thing going on so we weren't quite sure what counts would come back at, but they are still great at 223!! We are now over a month since the last infusion and still holding strong! That makes me so happy! :) Hopefully we can continue this trend and stay out for a little while.

Next Plan: Blood work again on Thursday!