December 5 - Infusion #35

December 5 - Infusion #35

We got over to the hospital and were running a few minutes behind since Levi had slept in. Thankfully they are never on our case over there for being a little early or a little late! They understand kids and that morning don't always go as planned. We got our stuff situated in the jungle room and Levi headed in to the vitals room to get his first set of vitals for the day. He did a great job sitting still and got the first set on the first try! It was a great start to the morning.

Then he was off to the playroom to play. He was the only one in the playroom and he bounced around from thing to thing. Playing with the train, laying on the floor, reading a book, playing with the doll house, and the big truck.

Then it was time to get accessed and get his blood work going. We had the older nurse today, she is such a sweetheart, and is very good with Levi! The port access went well and we were back to the playroom before we knew it. We are waiting for labs to come back today just to confirm that nothing crazy happened over night and he does indeed need an infusion. Levi had a blast playing in the playroom. He found the colored ball and made his rocket ship again!

"5...4....3...2...1... Blast Off.... Another Rocket Ship Run"

Then it was time to get bennadryl started and the doctor came in to look at him. Levi didn't care that the doctor was poking and prodding him. He was annoyed when the doctor tried to be silly. He asked Levi where he listened to his heart, and Levi pointed to his chest, and then the doctor went on to say "on your foot" and "in your ear" and "on your knee" and each time Levi kept pointing to his chest and getting more and more frustrated. As much to say, I pointed to the right place the first time, get with the program dude. Eventually he just gave up answering the doctors questions and drank his drink. The doctor is great with kids and likes to play with them which is nice, Levi just wasn't having it!

While the Bennadryl was running Levi asked if he could play with play dough. I thought that was a great quiet chair activity and we brought it in to the room. Levi had a blast playing with it. Mixing the colors some, but playing! And it really helped to pass the time.

Dr. K came in to check on him. She also brought the fact that his platelet count was 35! Yup another huge overnight drop. Also confirms that we will definitely be here for at least 2 days as he will need at least 2 infusions to bring the counts back into the normal range. Dr. K did a quick check of him. He was ok with that, but not super excited as he wanted to play.

After Dr. K left Levi wanted to make the solar system, so here is what we made. The sun is on the right in the picture and he made every planet. He made the rings for Saturn and Uranus himself, and if you look closely you will even see that Jupiter has it's red spot.

Then he insisted that we make the dwarf planets (the 5 red balls at the end) as well as an astronaut and space ship. I am no artist!! So take my astronaut (red guy near Levi's elbow) and spaceship (blue thing behind saturn and uranus) with a grain of salt, but he was excited for them!

After he finished with his playdough we settled in for some movie and popcorn. We started by watching Cloudy with a Chance of Meatballs.

We got about 2/3 of the way thru the movie when it was time for Jay to head to get lunch. Levi wanted a burger and some fruit so Jay headed down to the cafe. He hadn't been gone more then 10 seconds when Levi told me that he didn't like the movie and wanted to change. I was shocked. Jay had convinced Levi to watch Cloudy with a Chance of Meatballs by telling him that it was his favorite movie. I couldn't believe that Levi set there and watched it the whole time while Jay was there even though he didn't really like it!! That was so sweet of him! We changed the movie to the emoji movie and Levi was excited!

He ate some lunch, but not much, but that isn't overly surprising. We have determined that when his counts are low he doesn't eat as well as he normally does. It must have something to do with how he feels. Some day he will be able to explain how he is feeling and we will know that all these things really are related or aren't.

The infusion went on for another hour and a half. We finished the emoji movie and then the infusion was done. The end of the infusion was rough because Levi was tired and antsy. But it went well overall. We talked to Dr. K about tomorrow. She gave us a choice of all kinds of times. We chose 9:00 in case Levi slept in again.

Then we headed out. Levi was in pretty good spirits to be leaving since he knew that we were headed to David's House to play. Little did he know that we were headed for a nap!

Next Plan: David's House tonight and then another infusion tomorrow more then likely. If his counts are over 100 then he wont need a second one, but anything less then 100 and we will be getting another round tomorrow.

December 4-6 - David's House

December 4-6 - David's House

The drive to David's House was fairly uneventful. I had checked the website and there was no listed food so we stopped for dinner at Panera in Concord. Levi was a crazy man at dinner. He didn't want to sit still, he didn't want to eat, he didn't want to do anything but yell and climb under the table. I swear he isn't usually like that at restaurants, but the people around us probably thought I couldn't parent at all.

We got to David's House around 7:00 as usual. The space room was occupied much to Levi's dislike, so we were assigned the pig room. After we got upstairs to the room he seemed ok with that. Not happy, but ok.

Once we got our stuff in the room we headed down to the playroom to play. Levi definitely needed to get some energy out before there would be any prayer of a nap. We went down the back staircase and Levi was so excited that he could now touch both railings at the same time (a feat he has been trying to conquer for months!)

We got down to the playroom and Levi headed for the slide to play. His new pants were super slippery and the first time he went down the slide he slid right off the end. He thought it was hilarious and kept doing it all night!

Sliding right off the end of the slide. 

Then he wanted to do his normal and have someone build him a tower. We made a family game out of it. Daddy added one block to the tower each time. So we started with a 1 block tower and ended with a big tower. Mommy got to pick the blocks, and it was fun to give Jay a challenge with different shapes. Levi thought it was amazing, but definitely wanted his daddy to build the towers faster. He didn't like having to wait at the top of the slide, and several times slide down before Jay was done building.

After we were done sliding and had cleaned up all the blocks we went over to check out the rest of the playroom. Several of the boxes of toys were very mixed up, so we spend some time sorting out the toys so that Levi could find the blocks and other things that he wanted.

Before we knew it, it was time for bed. Levi picked out several stories for us to read and then we headed upstairs. He picked which bed he wanted and climbed in after we had read stories. Levi picked a few interesting stuffies to bring with him this time. The green parrots name is cuddly, of course piglet and monkey, doggy (a multi-colored dog from Santa's Village over the weekend) was in the car, and Shelley (a turtle that is really mine, but he likes to run off with). Also along for the first time ever was Huggie, Levi's weighted blanket that I finished making for him last week. So far it's been a god send. We will see if it keeps helping him sleep.

The next morning Levi slept in!! We barely had time to get up, eat breakfast, and get over to the hospital on time.

The day at the hospital went well (see post about Infusion #35). And we were back over to David's House around 2:00.

Levi needed a nap and we made him take one. Jay got him to go down fairly quickly and then we waited for him to get up. He slept for just under two hours, which is what he needed.

After he got up he was ready to play again! He came down to the playroom and we started playing right away. He laid out the "roads" and we played with the green dump truck.

The roads weren't long enough and Levi ended up in the hallway playing!

Then we were back to playing with the boxes of things. It's neat to see how his brain works now and he plays with the same toys differently now then he did a year ago. As you can see some of the boxes are missing. We spent quite awhile trying to find everything as well as trying to clean up what was there and make it work. Some things are just gone though.

Levi and I then spent awhile making magnet spaceships. He loved having them blast off, and then rebuilding them as they would almost always end up breaking.

In the process of doing some of the cleaning we came across a lot of things that didn't make us very happy. Lots of people come thru David's House and many of those people respect David's House and are so well behaved, but there are always those that aren't. We found missing boxes, broken toys, colored on toys, stamped on toys including dolls and the doll house, scratched toys. We were very saddened by this. I think we take extra pride in the playroom since we were part of the dedication ceremony, but this playroom has only been around for a year. Seeing toys be destroyed that were donated for the love of children is very sad to us. We hope that people who come to David's house will respect what is there.

Soon it was time for dinner. Dinner had been made tonight and was yummy lasagna and apple crisp. Levi didn't do great at eating, but really more he didn't do well with sitting. We tried to hurry him out of the kitchen as there were several sets of adults sitting at the other table who had no care in the world that a young child was in the room. The language being used was awful! Had it not been freezing cold outside I would have taken Levi and his dinner outside to eat! Food isn't allowed to leave the kitchen or we would have been anywhere but in there to eat. Again people, please have some respect. I understand that everyone there is going thru hell in one way or another, but do you need to make it worse for a family by not even allowing my child to eat his meal in peace?!

We were back downstairs to play! Levi had so much energy and was just running back and forth. At one point I thought it had to be bed time and looked at the clock and it was barely 6:30!

Levi and I made a spaceship out of paper and he flew that around for awhile. Then we headed upstairs to see if the people in the kitchen had left. Since they had, Levi made his volcano in the livingroom.

After that Levi needed to settle a little so we gave him some tablet time. Around 7:30 he decided he was hungry so we went into the kitchen to find a snack. He made a healthy choice and had an apple. Another family with 2 young children had come back. We have seen them before and the three kids "played" happily together, really more like ran around like crazy men, but no one seemed to mind.

At 8:00 we did bedtime meds and headed upstairs with books to read to start settling down. After reading Levi climbed into bed with all of his stuffies, needed Huggie on the turtle side tonight (had him on paw patrol side last night) and was out cold fairly soon.

The next morning Levi was up around 7:00 and for the first time ever at David's House he woke up Jay instead of me! And Jay took him downstairs. It was really nice to sleep in a little. The boys watched some TV and hung out in the playroom. I went down and met them in time for breakfast.

After breakfast we cleaned up the room and mostly pulled things together. Jay will come back over later to get our stuff as long as counts have increased since yesterday and Dr. K thinks that we can go home today. We don't want them to clean the room only for us to need it again like last time.

Thanks again as always David's House!! We will be back! We don't know when, but we will be back!

December 4 - Blood Work

December 4 - Blood Work

Well what a night we've had!! We had an amazing weekend at the Polar Express on Saturday and Santa's Village on Sunday! We got home late last night and Levi pretty much went right to bed. But this morning at 2am all hell broke out. Levi has come down with a stomach bug! From 2am-7am we changed his clothes 5 times and his bed 3 times. Some day he will learn how to throw up in a bucket right?!?! For now it's beside the bucket, on the floor, in the hallway, on his PJs, on his bed, pretty much everywhere but the bucket! He threw up for the last time at 7am and slept until 9:30. When he woke up at 9:30 he was a little lethargic, but not bad and wanted to run around my house. I kept him calm for awhile and then put him in the bath tub to get clean before we headed to the lab. He had a count of 264 on Thursday. I know the stomach bug will have brought it down, but we should still be good, and I would really like to not have puke in my car if I can help it!

He wanted comfy clothes, so we put on sweat pants and a big hoodie after his bath!

 Then we headed off to the lab at around noon! My fingers were crossed that the drive would go ok! He has eaten a little this morning and chugged a bunch of gatorade, and keeps telling me "I'm not going to throw up again mommy!" When we got to the hospital his fountain was working and he was excited to see it.

 Once we got over to the lab there was no line so we went right in, which was good, I was trying to keep him away from as many people as possible so that he wouldn't spread his bug. He picked out his band-aid and climbed up in the chair.

 He opened up his band-aid while I was talking to P. She said her grandson had had the same stomach bug over night! And since Levi's cousin had it over the weekend, there is definitely something going around.

 Levi is all about playing the iPad while he does his blood now. This is how he plays! Except during the actual draw he has to give us his right arm and only use his left. He does fairly well with it. Today he was doing puzzles.

After the draw he headed to the treasure box and picked a silver mini spinner. He was pretty excited about it. Then we headed to the McDonald's drive thru because he was begging for a happy meal, but there was no way he was eating that in my car, and then home to eat and nap.

Levi and I were laying in my bed with me attempting for him to nap when the phone rang. It was Jay, numbers had come in and they weren't good. In fact Jay's exact words after I said Hi were "Hi, We have a problem!" Levi's counts were 78! Yup you read that right 78! A 186 point drop since Thursday!!! Umm.. I knew the stomach bug would hurt him, but I didn't think it would be that bad.

Well there goes my plans for the week! I called Dr.Ch and after a few back and forth phone calls, Receptionist S attitude and not letting me thru to people, and some waiting we got the answer we were expecting which was that we needed to be seen. Since it was already 3:30 at this point (the lab wasn't very quick at getting us results today! And when we called Levi's doctors still hadn't received the labs yet!)we decided that we would just go to clinic tomorrow morning but that we would head to David's House tonight. We were told to expect another 2 day stay. I called and got us a room at David's House and started packing. Levi was ecstatic that we got to go!

Next Plan: David's House for two nights, Infusion tomorrow at 8:30am, with expected necessary second infusion on Wednesday morning.

November 30 - Blood Work

November 30 - Blood Work

Today's blood work went great. Levi and I slept in a little this morning and were a little late to the lab, but that's ok. Everyone needs a day like that once in awhile. We got to the lab and there was no line so he headed right in to pick out his band-aid.

The draw went quick as always! They really are over in the blink of an eye. You wouldn't think he was just 3 years old. He holds out his little arm, says his last name and birthday numbers, and just sits there. It's one of those bitter sweet things as a parent.

He was off to the treasure box and then off to school before I knew it.

Counts took awhile to come in. But when they did they were at 264. Hmm... That's quite the drop from Monday, 84 points. I mean the number is still great, but the drop does sorta alarm us. Of course we don't do anything until he is under 100 at this point and that will still be quite awhile, so no big deal, just something to keep an eye out for.

November 27 - Blood Work

November 27 - Blood Work

Well we did it!! We survived Thanksgiving with a healthy kid!! Levi had a great long weekend seeing both sides of his family, making reindeer candy dishes, and gingerbread houses, and relaxing and playing lots. Oh yea! And eating!!! I didn't know a little kid could eat so much! But he managed to put a LOT of food away!

We got to the lab this morning expecting a long wait due to it being the Monday after a holiday only to find that there was no wait at all! WooHoo! Levi went right in to pick out his band-aid.

The lab draw went quick and easy as always! P really is amazing!! Levi was off to the treasure box where he picked a water wow! Those things are amazing!

We headed to the car and Levi wanted to stop by the blue emergency light again. This has become a new passion of ours. It's located in the parking garage and he wants to walk by it and say hi to it and look at it every time we come into or out of the garage. Today I asked if he wanted to take his picture with it, and I thought he was going to jump up and down! So say hi to our new friend the emergency light!

Counts came in a little while later at 348, a 43 point drop since Wednesday, but when you are talking numbers in the 300's you don't really worry about a few point drop or raise, they all kinda wash out!

Next plan: Blood Work again on Thursday!