May 8-9 - David's House

May 8-9 - David's House

It's time to head to David's House again! Due to me having class on Tuesday night and some changes with Jay's work it made sense for us to drive to Concord separately and join together. So I picked up Levi from school. I had a few surprises in the car for him. He was super excited by his green yummy, "mommy" chips, and Berenstein Bears in his "DVD movie player"! It was a nice quiet drive to Concord.

 Once we got to Concord we met up with Jay at the park-n-ride and left his car there. Levi asked to switch movies to Care Bears at that point. The rest of the ride was pretty uneventful. We got to David's House and got checked into the Pig room! Levi was pretty happy about that room, because that room puts us next to the car bathroom which is his favorite! David's House was completely full! So was great to get a room!

The first thing Levi asks to do is get a drink from the blue water jug. I think he likes that it is at his height and that he gets to use a big boy cup!

 He was also super excited to see that the ice cream quilt was back! It's now back to his ice cream room!!

 Jay and I decided to try a new thing and split up for the trip. Levi and Jay went down to the playroom in the evening while I stayed up in the room and took some time for me. Around 8:15 I headed down to the kitchen to find them for purple meds and snack. Levi wanted an apple, but they didn't have any, so he settled for apple sauce. He did amazing with his spoon. Silverware is so hit or miss for him that seeing him do such a great job with it was amazing.

 After snack he asked me to come down and play with him so we headed downstairs. We played dinosaurs and slide and made a picture with the stamps.

 Then he asked to go to bed saying that he was tired. Sometimes his purple meds work a little too well and he wants bed sooner then we are ready for bed. We picked a few stories from the shelf and took them up to our room. The house was full of a lot of young adults and the TV in the main living room (where the books are and we often will read bed time stories) was on with Family Guy, definitely not an appropriate show for Levi. They did offer to change it for us, but I didn't want to make them change since there was like 8 of them and only one Levi so we headed upstairs. It was nice that they offered at least. I read the first story and then handed the second one to Jay to read, but Levi wanted none of that, Mommy needed to read both stories, so we compromised and read the second story together. Jay read all the left hand pages and I read the right hand pages with Levi on my lap. It seemed to make him happy and included Jay.

Then Levi climbed in his bed. He wanted the soft blankie off of the chair, so we let him have it. He looked super cute all curled up.

 Then we headed out to the hallway for the wait until he falls asleep. Tonight it took about 20 minutes (not common anymore) but there was someone who went into the car bathroom not 2 minutes after we left the room and showered, Levi doesn't like the noise of the shower running in the bathroom so I am sure that is what kept him awake. After the shower was over and I went back in to settle him again, it was only about 3 minutes before he was out cold. For the first night of travel ever he didn't want Piglet and Monkey, in fact he wouldn't even let them come out of the bag, told them they had to stay in that he was only sleeping with Cranberry tonight.

 After Levi was asleep Jay and I went downstairs for some unwinding and adult time. We ended up all the way downstairs in order to get a little peace and quiet and comfy chairs, as the living room was still full and the tables in the kitchen were full as well! Wasn't long before I called it a night as I knew Levi would be up early.

Levi woke up at 5:30! Such a lovely time to wake up. I got him situated on his bed with his tablet (Thank you Easter Bunny what an amazing present!!) and was able to snooze for another 45 minutes or so. Then I laid in his bed for another 20 minutes or so and helped him play some games before I figured it was time enough that we could go downstairs.

We headed to the playroom to play. Levi had made some friends in the playroom the night before (two boys about his age) and kept asking me why they weren't in the playroom, and why they were still sleeping. But finally him and I got into a good play rhythm.

After about 30 minutes of play Levi was ready for breakfast so up we went to eat. The selection was quite slim for breakfast so Levi ended up settling for Jelly on bread (he doesn't like toast) and he ate 3/4 of an entire Jelly sandwich, plus milk and gummy's and cereal and a container of fruit. I think he was hungry this morning.

After breakfast we were very sticky from all the Jelly so we quietly headed upstairs and snuck in to get dressed. Jay was still sleeping! Then we were back downstairs to play. Levi's appointment is a little later this morning then usual (a small mix up with the appointment scheduling again so we ended up with an 11:00 appointment), we wont wait until 11:00 but will wait a little later then normal before heading over. The nurses tell us that we can come over whenever we want on the day of his appointment as they know that we stay at David's House and they know that Receptionist S doesn't like us that much and doesn't like to take into account that we stay overnight.

Levi had a blast playing downstairs. We played slide, kitchen, magnet block, dobbers, animals, doll house, and read stories. We had a great time.

 Around 8:45 I heard someone coming down the stairs and in walks Jaye, she was so excited that she hadn't missed Levi! Apparently she had been in the kitchen and saw Jay eating breakfast, she was shocked to see him and said that she thought for sure she would miss us, when Jay told her that we were in the playroom she immediately stopped what she was doing and high tailed it downstairs. Levi was so excited to see her and wanted to show her the ice cream quilt was back. So he took her by the hand and dragged her back up the stairs to show her. It was super cute! Then he found out that she had brought Apples and she went up about 20 notches in his book (and believe me she is already pretty high up!)

 It wasn't long after Levi finished second breakfast that we headed over to the hospital. Cranberry picked a new stuffy friend from the main room and Levi lugged them both out. Meet Fluffy Cat! (who by the way is super heavy! no idea what that thing is made out of, but it's not all fluff!)

 Levi climbed into his car seat and then saw that there were things in the trunk and he wanted to check them all out!! Took us a minute to get him settled down!

Then we were off to the hospital! Thanks again as always David's House! We truly love you all and are so grateful for our home away from home! See you in 3 weeks!

May 4 - Blood Work

May 4 - Blood Work

Blood work this morning was simple and easy. There was a bit of a wait when we got there so we settled into the waiting room with his jungle book. He now wants me to read the pages with all the facts. It's great that he wants to know the information!

P called Levi in and he went running. He picked his band-aid as batman today and kept asking me what bat mans plane and helicopter were called. I told him that batman doesn't have a plane or a helicopter that he just has the bat mobile. Am I right?! Maybe I need to start watching more kid shows.

We had a few minutes to wait in the chair today, so Levi wanted to take a mommy and Levi picture! It's cute!

 The draw itself went great as always! P is so good with him and he has so much trust in her that he just sits so still. It's so nice! As soon as the draw was done he was off to the treasure box. It's getting pretty empty so he picked out 6 "squishy stretchy guys!" He loves those things and I hate them. They get all melty/sticky in my car and are a pain to clean out of his car seat, but it's what he wanted so off we went with them.

Numbers came in early today at 278. A great number since we are heading into an infusion on Tuesday and we are going 3.5 weeks instead of 3 weeks between infusions in order to get us back on our Tuesday schedule post vacation. :)

April 26 - Blood Work

April 26 - Blood Work

Well we are back from Vacation! Levi did amazing and had such a great time! This is one of my favorite pictures! It's just so priceless!!

Now back to reality! It was very nice to spend 8 days away from it and somewhat forget about Levi's health stuff. He picked up a slight cold the last few days at Disney World and is definitely over tired, so no idea what his numbers will be like today. He isn't bruised at all, well except the few obvious places where he took some normal toddler headers at the parks and in the hotel and pool. But bruising is not always a great indicator for us. 

We let Levi sleep in this morning and then had a relaxing morning at home. So we got to the hospital mid morning. As we were heading in, P was heading out. She stopped to ask what we were doing and Levi said "coming to see you! It's a P day!!" She gave him a little hug and said she would be back in 10 minutes she was just going on her break. So I didn't hurry at all. Levi hung out at his fountain for awhile. 

 Oh yes, look, we are back in pants. NH welcomed us back from vacation with cold and wet weather. :( We are ready for spring and summer not winter still!

 Then we headed into the lab waiting room. There were several people ahead of us so I figured we were good. Levi wanted his jungle book. He has started "reading" it to me. It's so cute to listen to him reading the pages and what words he remembers on each page and which ones he doesn't. And yes every page looks like the same jungle but he can tell you which page is which animal by the color button the page is telling you to press! He is such a smarty pants.

 P got back and moved the process along! It was soon Levi's turn. He went running in and gave P a huge hug! And said "I missed you!" So cute! He did a great job with the blood draw! And then we were off to the treasure box. He gave P another hug on the way out!

He asked if he could get a donut and I said sure, so we were off to see the "Donut lady!" Levi ordered and paid for his own donut. He is so excited when he does that. He does really well with it. Then we were off to school.

Numbers came in a little while after that at 302! An amazing number! With everything that we have done in the last 10 days since our last blood work, everywhere we have gone, everyone we have exposed him too, the cold he has, the cuts and scrapes and bumps he got, having a count this high is just amazing! Makes me feel great to see how well his little body can do with all of this!! Next step: Blood work again next Thursday.

April 17 - Blood Work

April 17 - Blood Work

Look at these shorts!! It's finally sunny and warm here in NH! Hopefully it will hang around. I am ready for the winter yuck to be gone and to have some sunshine and fun!

 P wasn't there today! So we had B, he did well! And yes a he! The first time we have ever had a male phlebotomist. He was amazing with Levi. And congratulated Levi on how good he did. Levi took an instant liking to him, which is strange for Levi. Usually when we have someone different he is jumpy and not wanting to hold his arm out. But B was so calming for him. I loved i! And so did Levi.

Once we were done he was off to the treasure box where he picked out a new orange car. Then he was out the door, but turned around and came back and gave B a giant hug. I think B was a little taken back by that, I bed phlebotomist's get more tears then hugs, especially from kids, but after the initial surprise B had a huge smile on his face so maybe it made his day! Then Levi was off to his fountain.

 We got out to the car and Levi said, "My cars gone! Look Mommy my shark ate my car!" He found it hilarious that his shirt has a mouth pocket in the shark and that his car fit in! He giggled about that the entire way to school! He was upset when I made him take it out to get into his car seat but the buckle fell right on top of it and that wouldn't have been safe, plus I can't assume it would have been comfy.

Numbers came in early at 232. In and of itself a great number! However that is a 19 point drop with an infusion. We never like to see those. It's happened before, but it's not great. And since we are leaving for vacation tomorrow it has me a little on edge. Not overly, but a little! Glad we have that lab slip, but still hoping to not have to use it.

April 14 - Infusion #26

April 14 - Infusion #26

Levi and I got over to the hospital. Levi was very good. We had a talk about how it was just Levi and Mommy and that he needed to help me out and be a great boy! And he took that to heart because he was awesome! He requested that we park on purple again, so I went all the way to the top of the parking garage. There are always close spots over there. Then we headed inside and got checked in and then headed out back! Wow! They were BUSY! As we were walking down the hallway Nurse A was cleaning out the jungle room. I am glad we didn't head over too early before our appointment today. Levi, like always, wanted to head right to the playroom, but that wasn't to be the case today, as they were ready for him and wanted to get right to doing work. Levi was not the happiest about this decision, but we made it work.

Nurse A took us into the vitals room and we took Levi's vitals. He did fairly well with that. It's always hit or miss. Some days getting a realistic blood pressure on him can take 6 tries, other times we get it on the first try. Then he was headed to the play room when Nurse T said, "not yet buddy! We gotta do work first!" so we headed to the jungle room. I was excited that we were going to have Nurse T, but that wasn't to be the case. We have Nurse J. She is nice enough, she just really isn't great with toddlers and has no patience for them, so it's really hard to have her. Levi gets super frustrated when we have her too, so that makes it tough. She has no patience with the kids and her organization skills could use some work as well. She wants him to just sit and wait like an adult and not like a 2 year old. And she wont let him help her, which makes him angry, because both Nurse T and Nurse K will let him push the flushes "all by himself" and she wont even let him touch them. So that's a battle. I try my hardest to explain to him that every nurse is different, while trying not to call her out, it's a tough balancing game. But overall he did well! He definitely has done much worse when we have her. He got accessed and we got the bennedryl started and then started watching Cars.

 He ate and drank lots today! But it kept him entertained. He wanted to go to the playroom but I explained to him that I just wasn't ready to attempt that by myself yet, and he handled that explanation well! So we chilled and watched movies.

 After Cars was over he asked for "Poppy's Movie" AKA Trolls, so I went in search of that and put it on. Then he wanted to color and do stickers, so we set up his art table and did that for awhile.

 Dr. C came in to talk about Levi and how he was doing. She talked about the clinical trial that she worked super hard to get him into. She seemed frustrated that they made the call to not let him in based on his age when they hadn't indicated that early on and had them go through the whole process. She said she understood and sort of expected it based on FDA regulations, but that the fact that the company led her and us on about the possibility of getting accepted anyways was frustrating, and I definitely agree. She said that she is staying in touch with the company and that they and us are still on the list for future trials if it gets to that point, but that is years down the road. I am so glad that the staff here are amazing and care about Levi so much to pursue these types of possible opportunities even with the frustration, and the fact that they found it not us. It's just nice to know he is in such good hands.

Before we knew it the infusion was over! It seemed like it took forever and yet no time at all at the same time. Confusing I know, but if you are a parent you'll understand how a minute can feel like 15 hours, but 4 hours can feel like 10 minutes. It's crazy! De-access went ok. Levi did great, but Nurse J just isn't good at it. She somehow got the needle stuck and couldn't get it out right, and then Levi was kicking/pushing off of her, because he doesn't like being de-accessed and I can understand that is frustrating, but she yells at him to stop, which of course only makes him angry and makes him really start kicking. It's a vicious cycle!

Numbers came back today at 251! So a great number pre-infusion! I am excited that numbers are staying high going into vacation. We did get a lab slip to take to Florida with us in case we need it, since our labs are standing order we don't have anything to travel with. We hope to not have to use it, but better to have it then not.

Levi wanted to go to the playroom. And as per our normal agreement he was allowed to go! He was so happy to be free and go play! The CLS Intern watched him for a few minutes for me so that I could use the restroom and get our room cleaned up as I knew that there was someone who was temporarily "assigned" to the playroom until we got moved out of the Jungle room. They were the busiest I have ever seen them!

Then we were off to head home. Levi did great today! I was a little nervous headed into my first full David's House and Infusion by myself, but now I know I can do it if I need to. Levi could not have been better for me. We do need to work on being able to go to the playroom and potty while he is connected just him and I, but that will come! The local ice cream store opened today and I think we are headed there for lunch on the way home because Levi did so well!

Next steps: Blood work on Monday to make sure the infusion worked well, and then off to Disney World!

April 13-14 - David's House

April 13-14 - David's House

For the first time ever Levi and I were headed to David's House just us. With vacation next week Daddy needed to work and Grammie was busy with Auntie Martha! But since Levi is getting older and this is becoming much more routine I figured we would be fine.

I picked Levi up from school and we headed straight up. It didn't make sense to drive home first as that just added unnecessary time to our journey. We stopped at the Lee traffic circle for dinner because Levi said he was hungry. Then he proceeded to pout while eating his happy meal!

While at McDonald's Levi asked for his movie to be switched to Ghost backyardigans. We weren't 15 minutes down the road when he started screaming for it to be off and covering his ears and eyes. I guess he wasn't quite ready for it yet. He said it was scary. I turned it off and found a safe place to pull over to switch his movie, as there was no way I was driving all the way to Lebanon by myself with no movie.

When we were at McDonald's Levi asked for ice cream and I made a deal with him that if he ate his meal we would stop at Exit 9 for ice cream. So we did! Of course he picked the ice cream that is as big as him, and somehow got a slushy out of the deal too! It's a good thing he's cute!

 We then had to stop at the rest stop to clean him up as he was covered in ice cream and had dropped a huge chunk in his car seat and told me he couldn't pick it up because it was cold and as I didn't want his car seat completely soaked and ruined I pulled over and cleaned it up! For anyone counting, that is 4 stops on the way to David's House. We often do it with zero stops!! It was a long drive, but overall Levi was very good.

We got to David's House and got checked in to the cow room, then Levi begged to go out and play. I said sure. We got outside to the playground and everything was wet, so Levi got soaked. But he was ok with that, in fact he kept singing "I love my wet clothes! I love my wet clothes!" it made me giggle.

He's getting so big. He can climb it all by himself now. In the fall he still needed help!

Then he found the puddles and asked if he could jump in them. I said sure! He was already soaked, and whats a little more water. He said that they were the ducks puddles and that they wouldn't mind if he jumped in them! I giggled, but agreed!

It started to get dark and Levi was very cold. So we headed in. I figured we should just put him in his PJs and let him run around in those. David's House requests no bare feet, so he is putting on his socks so that he can go play.

When we checked in Levi had asked if they had a new blankie for him. Since it's been over a year since he picked a quilt from the quilt closet I said he could. He was so excited. So we headed up to the closet for him to pick. He had a really hard time picking. But eventually ended up with the one in the picture below.

After he picked his new quilt he was ready to go play!

We were playing with the trains, when a lady came in the front door and said she had just been outside smoking and there were bears outside. I looked out the window and sure enough there were bears at the bird feeders and gingerbread house. At first I thought it was just 1, but after watching for a few minutes we realized it was 4 bears! 2 big ones and 2 smaller ones. It was really cool to watch them. Levi liked it too, and kept asking if we could go outside and saying "I'm not afraid of the bears. They are nice!" Don't worry we stayed inside.

Sorry the picture is crummy. If he zoom in you can make out the four bears.

It wasn't long before Levi told me he was hungry, so we went in to the "ice cream" room for a snack!

Then we headed downstairs to play before bed. There was a little boy down there, maybe 15 months, Levi did very well playing nicely with him.

Then it was bed time. We video chatted with daddy before falling asleep. He didn't want the blankets on the bed, only his new quilt!

He fell asleep pretty quickly! Somewhere in that mound is a sleeping Levi!

Levi did a pretty good job sleeping and only woke up around 5:30! I'll take that as a good sleeping morning at David's House! He watched some Paw Patrol in our room while I woke up and then we were off to playing. 

After breakfast he saw that Jaye had gotten in for the day. He asked if we could talk to her about the ice cream quilt and that he doesn't like the chicken quilt in his ice cream room and that we need to put the ice cream quilt back. So into her office we went! After they had a good conversation she said that yes we could go upstairs and see about the ice cream quilt. I love how great the staff is with the kids. Jaye loves Levi and she got right down to his height to talk to him, and was all on board with helping him out. We got upstairs and she even let Levi unlock the door.

While up there we didn't find a plain ice cream quilt! But we did find one with all kids of fun food on it. Donuts, cake, cookies, ice cream, sprinkles. Levi said that would be ok, so Jaye pulled that one out. She said she would talk to the ladies who make the quilts and request an ice cream one for the room!

While we were up that Levi also saw the soft fleece blankets! He asked if they were blankets for kids. Jaye said they were and asked if he wanted one. I reminded Levi that he had gotten a new quilt the night before, but Jaye said "oh this isn't a quilt its a blankie, it's different, he can have both!" So he picked out the stars and moons fleece blanket and was excited! We went down to Jaye's office and played peek a boo and roll on the floor with his new blanket!

Then it was time to get dressed to head over to the hospital!

I had brought Levi's super cape and he was super excited to wear it!

Then we were out and heading over to the hospital! Thanks again David's House for a great time! We will see you again in 3.5 weeks!!