November 13-14 - David's House

November 13-14 - David's House

Once Jay got home we got on the road to David's House. The snow made for a long drive. Jay drove up and there were patches of over an inch of snow/slush on the ground and patches of bare road. It was a long and rough drive, but we made it. I can't believe the snow curse of David's House started already. I swear that every time we head to David's House in the winter it snows. It will be a beautiful week and then we have to head up and it snows a blizzard.

We didn't stop for food on the way up as there was dinner at David's House, but Levi did have some snacks on the way up. About half way up the following conversation happened.
Levi - "Mommy I'm thirsty"
Mommy - "Ok Levi, what would you like green juice or lemonade"
Levi - "My applesauce"
Mommy - "Umm... I thought you were thirsty?!"
Levi - "I am! For Applesauce"
Jay and I had a good giggle about that, but he happily set and ate his applesauce pouch and continued watching his movie.

When we got to David's House, we went in to check in. There was a new volunteer training on the check in process. It was actually a new process so it took a few minutes but we got all signed in. Kim told us that we would be in the Pig room and Levi pouted. So then she said, "hold on, you guys are only here for one night. Let me see what I can do" and she pushed some buttons on the computer and all the sudden we were in the Space room and Levi was jumping up and down excited. He went running up the stairs before we even had the keys!

Then we came down to have some dinner. Some boys from the college had made spaghetti and meatballs and Levi was excited. He ate pretty well for him at David's House after the drive. He is generally just so tired of sitting from the car that he doesn't want to sit and eat. But meatballs got him to the table! He ate 5 meatballs, some pasta, some bread, and some peas! I was pretty happy with that!

Then he was off to play. Since Jay and I were still eating he played in the living room. He made this whole tower all by himself and was pretty excited to show it off. The picture doesn't do his smile justice. He told us it was a volcano that he had made. 

Jay and Levi then headed down to the playroom to play while I set at the table with Kim and the volunteer and talked about stuff. We talked about some of the families who have recently gone home. It's always nice to hear about NICU babies that finally go home. The house was pretty quiet! Which is always nice, for several reasons, I don't worry as much about Levi running around and being crazy, but also because the emptier the house is the less families who need it, and that is always a good thing.

Jay had some ingress friends drop by the house, so they stood on the porch and talked! (brrrr....) While Levi and I played games in the living room and then headed upstairs to play. We played with Chase in the space room for quite awhile.

Then it was time to get ready for bed. We read stories, mostly the space book! And then he climbed into bed. We said good night and then Jay and I headed into the hallway to wait for him to fall asleep. It had only been about 5 minutes when Levi came stumbling out into the hallway and asked for a rub. Jay went in and gave him a back rub and a cuddle until he fell asleep.

Then we headed downstairs for some quiet time before bed. Hindsight is 20/20, but I should have gone to bed at the same time as Levi for the night that was coming. Levi woke up at 2:40. He climbed into our bed for a little while, then wandered back to his bed. Then I layed in his bed for a few minutes giving him a cuddle because he wanted it. When I thought he was mostly asleep I crept back to my bed, but that was a bad move, because he wasn't asleep yet. Then it was Jay's turn, who laid in his bed for 20 minutes or so, then they went to the potty. At this point it was 4:20 and both Jay and I were exhausted. When they came back from the bathroom, I kicked Jay out of our queen size bed and told him to climb in Levi's twin bed and go to sleep. I told Levi to climb into our bed and I held him until he finally fell asleep around 5:15! What a Long night!!!

Thankfully Levi slept until 7:30! When he woke up I gave him his tablet and headphones for a few minutes so that I could wake up a little more before facing the day.

Then Levi and I headed downstairs for breakfast. I gave him what I thought was apple sauce. He spit out the first bite and I told him that wasn't ok. He said it was yucky. I told him it was apple sauce and that he like apple sauce, only to find out that it wasn't apple sauce but instead some sort of pureed mango sauce stuff. Yea I agree with him, it was yucky! But I did have him eat all of his Rice Crispies. He was double fisting his drinks! Couldn't decide if he wanted to drink from Strawberry Shortcake or Doc McStuffins.

We had a few minutes to kill before our 9:30 appointment, and Jay was still sleeping, so Levi and I headed downstairs to play. We cleaned up a giant mess down there that someone else had made so that we could get to the slide and desk. Levi was a great helper with cleaning up even though he hadn't made the mess. Then we played at the desk and colored.

Levi had fun playing with the clip board!

In the middle of playing with the crayons and clipboard, Jay woke up and came downstairs so he played with us for a few minutes.

After we were done coloring we played tower and slide. Levi always giggles at that. And we had a blast as a family.

Then it was time to get ready to go. Levi and I headed upstairs to get dressed, do button cream, fill in the thank you envelope, and pack up. Jay went to the kitchen to eat breakfast. Levi was awesome with the button cream, laid right down flat and kept his arms at his sides. Then we got him dressed and he played in the mirror while I got everything else done.

We read one more page in the space book before heading out. We said goodbye to Jay and the volunteers and headed over to the hospital. We don't know when we will be back! But don't worry we will! David's House is our home away from home and we are so grateful that they are there for us always!

November 13 - Blood Work

November 13 - Blood Work

Good Morning! We had a fairly quiet weekend with Levi's counts being low. Did some mystery hunting, had a PJ day, made a solar system, and lots of playing! We got over to the lab this morning. Levi's fountain was running and he was very excited about that.

We got over to the lab and there was a wait as there is most Monday mornings. Levi struck up a conversation with the older gentleman that was sitting next to him. They got to giggling which was fun to watch. When it was Levi's turn he headed in to get his band-aid, and to check that his picture was still on the wall. He was very happy to see that it was. P told him that his picture would be on the wall forever and that made him grin!

After he got his band-aid open he headed over to the chair. He asked P if she had her tablet, which she did, and he settled in to play.

The draw went awesome as always! And we were off to the treasure box before you could even shake your head. He dug around for awhile and finally settled on a green squishy guy. He calls it Rhino Dino. And he kept making it make a huge bubble and then would tell me it "pooped". Oh, the joys of living with a boy!

Auntie Martha, Check out my space bear shirt!! I love it!!!! :)

Levi asked for a donut, but I told him no and we were off to school. We got to school and headed upstairs to his classroom. He went running in with his jacket on, I was calling him back to the hallway to take it off when his teacher started coralling him out into the hallway. I thought she was just going to make him take his jacket off, but nope, she wanted to talk to me. She explained that half of the schools teachers were out with a stomach virus, that they were also short a ton of kids, and that a little boy had just gotten sick and they were working on calling his parents. They of course can't tell us that he can't be there, but I like that they are very very open with us about any and all sicknesses going thru the classroom. I made the split second decision that there was no way he was going to school. With counts at 141 on Friday and no idea what they were today I just wasn't going to risk that. Stomach stuff is not good for his platelets. So we turned tail and left school!

Levi didn't understand what was going on. This was one of the first times that I really had to explain things to him. He knows that he gets blood work done and sees Dr.V and wears a medical bracelet, but he doesn't really understand. So we had a talk about that his numbers were low, and that his friends were sick, and that Mommy needed to keep him healthy and therefore we were going home. He still didn't quite get it, and he can be very negative, so he took it to the full extreme that his numbers were low and he would never be able to go to school again, that it was closed forever. We had a long talk about it, and I think he was starting to understand.

We were driving from his school to Jays work in order to talk about the plans for the day, when Jay called to tell me that blood work had come back and his numbers were 105! Not good. That would definitely be a trip to Lebanon tonight for an infusion tomorrow. We got to daddy's work and Levi went running in to play. Since Jay and I needed to make some important phone calls, Jay's co-worker and our friend Roz took Levi around the shop to play. Even giving him a rolly chair ride all around the shop!

We called Dr. V and Receptionist S blocked us as per usual. We left a message with Nurse J. Then we called David's House to see if we could get a room for tonight. While I was on that phone call, Dr. V called back so of course I missed that call. Then we called Receptionist S back who was annoyed that we had missed the call, but finally got thru to Dr. Ch who wanted to see Levi in clinic at 9:30 Tuesday morning for repeat lab work and an infusion. Then we called our back up daycare to see if all of those kids were healthy, but they weren't, so the decision was made that I would just stay home with Levi for the day, thankfully I have the option to Work from Home when needed. Then we called gynmastics class to get him moved into a make up class on Thursday as he wouldn't be able to make class tonight.

Then Levi and I headed home. We spent the morning playing, working, watching TV, and hanging out. He took a nap after lunch. When he woke up from nap it was snowing and he was so excited. I couldn't deny him going out, but I didn't want him to get sick, so we were only out for about 5 minutes. But he had a blast!!

Next Plans: Head to David's House tonight for an infusion tomorrow!

November 10 - Blood Work

November 10 - Blood Work

Today was kind of a weird day. We started the day at Auntie Martha's House. Yup we went up on a Thursday night and came back on Friday. We needed to all be together to book our Disney cruise or as Levi likes to call it "Mickey's cruise boat"! He is very excited. It could be a long year and a half before the ship sails!

We got to the lab around 11:15 and there was quite the line. I was shocked. I figured that would be a quiet time, but it wasn't. Levi and I settled in to wait! He took some selfies before playing Toca Kitchen. So I present to you the many faces of Levi after being in the car for 90 minutes!

Then it was our time so we headed in. Levi picked out his band-aid and then climbed up into the chair.

He was being a goober!! The blood draw went great as always. P really is a miracle worker! Then he was off to the treasure box. He picked a Ninja Turtle, but had a whole discussion with P about the fact that it was Michaelangelo and that Donatello is his favorite, and asked her why she hadn't gotten Donatello too. It was cute!

Then we were off to school. Levi asked for a donut, I told him no, and then we had a whole discussion about that there were no donuts left because it was lunch time. He seemed ok with that because he would get lunch at school as soon as we got there.

We got to school and rushed inside expecting him to make the last 10 minutes of lunch or so. But his class was ahead of schedule, and they were all already laying down for nap. Oops. I thought he would throw a fit that he was hungry, but he didn't. He went right in, got out his mat, gave the substitute teacher a dirty look because she was sitting where his nap mat is supposed to go, but as soon as she moved, he gave me a hug and layed down. His teachers told me that night he was asleep within minutes of me leaving. Guess his cousins wore him out! And thanks Auntie Martha for the Dunkin Donuts this morning so that he had eaten something!!

Counts came in a little while later at 141. Not great. Still an ok number for our new levels, but at this point in the past we would be heading to Lebanon for an infusion, so it is definitely going to be a long weekend of carefully watching him and staying home or away from lots of people so that he hopefully doesn't catch anything.

Future plans: Blood work again on Monday. And probably packing a bag Sunday night with the expectation that we will be headed to Lebanon on Monday. I don't expect his body to pull back from this, but who knows, he has surprised me a lot in the last 11 weeks.

November 6 - Blood Work

November 6 - Blood Work

Good Morning! As we were walking in today Levi and I talked about his picture and what he thought P would have done with it. He said she would have hung it up and I agree that she probably did. We got to the lab and there was no line and no waiting, so he went right in. And lo and behold she had not only hung it up, but had framed it first! Levi was SOOO Excited. He had this giant smile on his face like his whole world was complete because P hung up his picture.

 Levi went over and picked out his band-aid and climbed up in the chair to open his band-aid.

Then he asked P if she had her tablet for him to play and of course she did, so she brought it over for him. Once again he loaded up the Panda game. Thankfully no one else has played it so we are still only on level 3! The blood draw got started and Levi and I were playing the panda game. He saved one panda but was getting frustrated that he couldn't save the others, so I started helping him. Blood draws go so well now that I didn't even realize that it was over. Levi and I were playing the panda game and wanting to win. P tapped me on the shoulder and giggled with "you are still holding his arm" and sure enough I was. The blood draw was all over and yet Levi was still holding out his arm and I was still holding it while we were playing Pandas. We all had a good giggle about that. We did save all the baby pandas in case you were concerned!

Then Levi was off to the treasure box. P had gone shopping over the weekend so the box was full again which always makes Levi happy! And makes his decision making harder. He wanted all 4 of these little squishy guys. I told him he had to pick one so he picked none. (That's how his brain works, if he can't have it exactly his way he decides he can't have it at all, its very negative thinking and frustrating, but we are working on it.) He ended up settling on a dart board thing and was excited to play it! Then we were off to school!

Labs came in fairly early this morning, but did require Jay to fill out another fax acceptance form. Very frustrating that we fill those out at least once a month. You would think it would be on file for at least a year. Counts came in at 198. So a great number! A drop from Thursday, but still an amazing number.

Next Steps: P told me that she has Thursday off because she has to work on Saturday, so since Levi's numbers are so good we will hold off on blood work until Friday so that we can see P. Although blood work goes so well now it is still a stressful thing for him to have someone besides P, so we try to avoid if possible.

November 2 - Blood Work

November 2 - Blood Work

Levi was very excited to bring his picture for P in today! We have kept it in the car since Monday and every day he has asked if it was time to bring it in. He wanted to show his picture his fountain! Then he was off to see P.

 There was no line or waiting today so he got to run right in. He gave his picture to P. She was very excited! And he gave her a big hug!!

Then he was off to pick out his band-aid and climb into the chair and wait for P. She brought over her tablet and he started playing. He picked out a ball game where you shoot the balls and "save" the baby panda bears. He got so excited every time he saved a baby panda and would cheer. He doesn't really have the knowledge of how to play, but with pure luck he won the level!

The draw went really well and quick as usual and then Levi was off to the treasure box. He picked out a blue mini frisbee. As we were heading out of the lab Levi asked if he could get a donut. I said "I don't know buddy, we'll see", since he was eating cereal and milk in the car. P was like "can he have one?" I said "yea" thinking she was going to give him the $1.25 for a donut, but nope. She opened up her lunch and gave him mini donuts from her lunch. He was super excited!! She is so nice to him!

 We headed to the car. Levi was being silly and walked backwards all the way down the hall!

We got out to the car and Levi started chowing down on his donuts! He was pretty excited about them. Then we were off to school.

Results came in later that day at 214!! Really?!?! A 22 point increase since Monday?!?! I don't understand these numbers, and how his body is doing this. From all the research I have done this doesn't seem normal. I'm confused. Happy for him, but confused.

Next Plan: Blood Work again On Monday. Have a great weekend everyone.