March 27-28 - David's House

March 27-28 - David's House

The trip to David's House started out a little stressful. I got stuck at work about 45 minutes longer then I had hoped. Then I got stuck behind the train in Dover for over 5 minutes.

 Then I arrived at Nursery School only to find out that Levi had just had an accident and they were just starting the process of getting him changed. Luckily he hadn't taken his pull up off after nap so it wasn't as bad as it could have been, but I still awkwardly stood in the entry way to the school for 5+ minutes while someone else cleaned and changed my kid.

Levi and I got home and I went right upstairs to pack while Jay helped him get ready for the long car ride. And about 15 minutes later we were on the road. Only about 30 minutes behind my goal leave time!

We decided to stop for dinner on the way because we were running so far behind and I wanted Levi to be able to play once we got to David's House and not have to eat, and I really didn't want to have to deal with there being no dinner, so we drove through Burger King. Levi was excited.

About 20 minutes from David's House I had had enough of listening to Paw Patrol on repeat and clearly so had Levi since he wasn't paying it any attention any more and was instead singing and screaming so I asked him if he wanted a different movie. He said yes, so I asked Jay to change it. Somehow between pushing stop, removing one DVD, putting in a new DVD, and pushing play the DVD player broke! No matter what we did it wouldn't start playing again, wouldn't even spin up the DVD. UGH!! Thankfully we were almost there!!

We got to David's House and checked in. We were in the pig room this week! Levi was excited. We headed upstairs and he went right in to the bathroom like he is supposed to. I went into our room to look at the new newsletter (some of you will be receiving it in the mail shortly! Keep an eye out for it!!!) A few minutes later Levi comes running in and says "Mommy Come Here Mommy Come Look. There's NO sink!!! Mommy No Sink!!" I thought he was crazy and just didn't want to get in trouble for not washing his hands, but I got up and went and looked and sure enough David's House is doing some remodeling and there is no sink! Levi thought it was the most hilarious thing ever.

The boys headed downstairs while I took my 5 minutes to unwind from the two hour drive and finished reading the Spring Newsletter! Then I checked the time and realized that sadly it was about time for Levi's little purple magic pill so I headed downstairs with it. I found the boys reading!

 Once Levi saw me he was done reading and we were off to the races! Levi was the recycling truck (as usual! Rocky, his favorite puppy, drives a recycling truck and he wants to be just like him!), I was the dump truck, and Jay was the fire truck! We were zooming all over the place!!

 Then Levi played with the doll house! He kept putting the mommy doll in the closet and giggling and telling me "shes in the closet mommy!" it was super cute! (And very innocent! He has no clue the slang meaning of "in the closet" and we plan to keep it that way!)

 Then we went grocery shopping. He brought me back "dinner": pink ice cream, meatballs, no spaghetti, corn, no carrots, and ketchup. It was an interesting meal!

 But wait, can't finish our shopping without a baby! Now that we have one of those we have to slow down our running some. Don't want the baby to fall out!

 He took the key from the table and spent a good 5 minutes sitting on the floor unbuttoning it, taking the key off, putting it back on, and re buttoning it. Was great to see his little mind working at all of those tasks.

 He was getting sleepy so we headed upstairs for snack before bed. He picked an apple! And we set in the "ice cream room but now is chickens, I don't like the chickens, I like the ice cream" room! He ate almost that entire apple and then we headed upstairs.

 On the way upstairs I noticed that Jaye had hung up the picture we made as a family and given to her the last time we were here. Levi was happy to see it. Jay had forgotten all about it. Jay colored the cloud, Levi did the green grass, and I did the rest of it with some color help from Levi!

 It didn't take long for Levi to fall asleep! Jay went to bed at the same time that Levi did since he wasn't feeling well.

I headed downstairs for a little relaxing and then headed upstairs around 10:00. Levi had a very rough night of sleep. His cough was nasty, he couldn't settle, he was very wiggily. It was just bad all around.

5:30 am came way too soon!! But that is the time that Levi decided it was time to wake up. I tried to get him to settle back down in my bed and his bed, but that was pointless so at 6:00 I gave up and gave him my iPad with Paw Patrol on it. At 6:30 Levi and I headed downstairs to play. We slid, we ran, we laughed, and we played with magnet blocks. It was a fun mommy Levi morning, even if it was very early!

At 7:20 we headed up for breakfast. Jay came down around 7:50 and I went up to get dressed. It wasn't long before we were checking out, saying our good byes, and heading to the hospital for the day!

Thanks as always David's House. See you again in 2.5 weeks!!

March 23 - Blood Work

March 23 - Blood Work

Back to our normally scheduled program!

When we got to the lab there was a person who had just gotten called in so I knew that it would be a few minute wait. Levi climbed up in the chair and wanted his animal sounds book. I went to sign in and P look at me and goes "What are you doing here?!?!" I said "P it's Thursday, we are always here on Thursdays" She said "Oh right!" ...pause.... "Wait! then what were you doing here on Monday?!?! Is my Little guy ok?!"She really does love and care about him.

Levi had me read the entire animal sounds book to him, and then he wanted to read it to me. It's so cute! He has it mostly memorized, so he tried to mimic me exactly. He would say "I have stripes. Push the dark green button. What am I?" It's an awesome job!

Once it was our turn we went running in to the lab to pick out our band-aid. He spent a few minutes there and some how came out from the very back of the cupboard with a brand new box of super hero ones that I had never seen before. I really need to brush up on my super hero's, if it isn't Spiderman, batman, or Super Man I can't tell you who it is. Of course the band-aid he picked wasn't one of those. I think it was Captain America, but I could be very wrong.

We really do love P! And are so glad that she is back. She mentioned to me that Levi's standing order was about to expire. I assumed I would need to call Dr. V's office and get an updated slip, wasn't looking forward to dealing with Receptionist S again, been awhile since I have had to call her. When P said, "oh yea I called them and they faxed it right over!" I was taken aback! She took it upon herself to call and get a new one for me! She didn't have to do that, she could have just said "oh yea it's expired!" I was shocked! She said that we have so much on our plates it's the least she can do! Wow!! She did remind me that we would need to register again, ok no big deal. Then she held up the folder and said "it's a good thing the year is up, I don't think I can put many more stickers on here" and she was right! The folder was covered with all of the barcode stickers.

The draw went great as always! Before we knew it we were off to the treasure box. Levi picked out a matchbox boat that came with it's own water! He was pretty excited about that. And then we were off to school.

I wasn't quite sure what to think about numbers today. His stomach has been better, but generally once we are on a downwards slope it doesn't give up. But luckily it at least slowed down. Counts came back at 209!

Next plan: Infusion on 3/28. I did have to call Receptionist S about this one. It had never been scheduled. The next one in April had been since that was a strange schedule date due to our trip to Mickey's house, but somehow this regular one had been missed. She was fairly nice about it. Probably the nicest call I have ever had with her. I wasn't going to push my luck though, so when I checked mydh again and noticed that she had accidentally made the appointment for 4/28 and not 3/28 I made Jay call! But we are all set now. So David's House on 3/27 and infusion on 3/28.

March 20 - Blood Work

March 20 - Blood Work

Happy Monday!! I know I know!! I said in my last post that the plan wasn't to do blood work again until 3/23 but... Levi has had a stomach ache and belly issues all weekend, and those are the types of things that can tank our counts pretty quickly if we don't get them under control, so we wanted to be safe rather then sorry.

Levi was excited that we were headed to see P on a Monday morning!!! We got to the hospital and there was someone already in the lab so we settled into the chair with his animal sounds book to wait.

It wasn't long before P called him in. And he went running in. Gave her a big hug! The draw itself went great as usual and we were off to the treasure box before you can count to two two (Levi's favorite number AKA 22)! :) He took a few minutes to decide what he wanted but settled on a yellow bull dozer! The bull dozer just had to drive out of the lab, it definitely couldn't be carried! Everyone got a good chuckle out of that.

Levi and my deal is always that he gets a donut if its a non-standard or extra blood work day so off we headed to the cafe. Thankfully they had sprinkle donuts today!

His truck is showing me the sprinkle donuts!

After his school drop off I grabbed his donut and what did I find?! A half eaten donut! This is a first! The frosting is all in place on the side he didn't eat and he actually took bites out of it and properly ate the half he ate! I was shocked! My little boy is growing up.

I was a little on edge waiting for counts today, but they came back at 220! A 37 point drop since Friday! That's not good! but a much smaller drop then we were expecting so I will take it.

Plan: Blood work on 3/23 (for real this time!)

March 17 - Blood Work

March 17 - Blood Work

Happy St. Patrick's Day!!! This is Levi's favorite Holiday because it is his favorite color!!

Since we were out of town for another appointment on Thursday we are doing blood work on Friday. I was a little worried that P might not be there, but she was! So all was good!! P showed us a picture of her grandson who is a few years older then Levi and their shirts were almost identical! It was super cute! They were both dressed up for St. Patricks day!

The draw itself went great! P makes everything so easy! There was no line or waiting when we got there so Levi went right in. The draw is over before we know it.

Once the draw was done Levi went running to the treasure box and picked out a spiderman ball! The couple who provides the prizes has been on point lately! Levi has gotten some amazing treasures. Some day I would really like to thank them.

Levi was bouncing his ball out of the lab, sorry for the blurry picture, his ball was getting away from him!

Levi had asked that morning if it was donut day and I said "sure". So after blood work we headed over to the cafe to get a donut, and they didn't have any!! Not a single one!! I was shocked! Levi was sad. He said "I guess I can't get a donut! I guess I was naughty!" It broke my heart, so off we went to Dunkin Donuts for a green sprinkle donut! He was over the moon excited! :) There is only one DD on the way to school from the hospital and it has no drive thru, so that is a little inconvenient, but we made it work and Levi was a very good boy!

Counts came in at 257! A great increase in a week!! :)

Next Plans: Blood Work again in a week!

March 9 - Blood Work

March 9 - Blood Work

Oh what a morning today was!! Levi had melt down after melt down, no listening ears, and no decision making this morning! It included him losing the ability to even ask to get a donut at blood work before we had even left the house. It was a rough one!

When we got to the hospital we headed right in to the lab. There was no line today so Levi went right in to see P! He picked his band-aid, the blue fish as per usual lately, though I thought for a minute he was going to go with emoji's because he asked what it was and giggled at the smiley faces. He climbed up in the chair and was being super silly with P. It was nice to see him smiling! He did a decent job holding his arm out, but did have a little melt down after the needle was in, not quite sure what that was about, but he came out of it pretty quick. While his blood was filling the tubes he asked P if he could take the tourniquet with him. She said "no, but you can have a new clean one!" he was pretty excited by that. Then he asked her if he could take his tubie with him. She explained that it needed to go to the lab, but that he could have a green one! When the blood was done he got his band-aid and jumped down, but instead of immediately going to the treasure box like usual he just stood there. P and I kinda looked at each other, and then Levi tried to slide in front of P to get to the cupboard and said "You forgot my tighty tight!" she was like "your what?!" he said "my tighty tight!" she giggled at the fact that he uses her fun names and she got him a new one from the box. He told her that they were so cool! Then she handed him a green tube. His little mind was so excited! We had to ask him if he was going to go to the treasure box. He got over to the treasure box and opened the cover and what was sitting right on top?! Another package of 3 race cars!! He was super excited. He grabbed them and off we went. Since his hands were full of all his stuff he gave P a hug instead of a high five!

We headed out to the fountain. He looked at the fountain and then looked at the donut case. He then looked up at me and said "I wanted to listen but I didn't!" with this cute little pleading face!

 I answered with you're right, you didn't listen this morning. He took one last look at the donuts and then put on his coat! He was very good and never actually asked for a donut! I was proud of him for knowing that he had lost it.

On the way to the car he asked to be carried and said "Sorry I didn't listen Mommy" all on his own! I said "Thanks buddy! Now you have had your consequence of not listening with no donut and we can have a good day from here on out!" He said "Maybe we can try for a donut tomorrow?!" I said "Maybe!" It was really cute. I think we are finally starting to find a grove of things that work with him. Time out doesn't work, he doesn't understand; the biggest consequences for him are losing things that are in his routine/norm and emotions. Telling him you are sad or angry or upset makes him change his tune, and losing things that are in the routine like the donut. As we were walking to the car the wind was really strong, I was very glad that I was carrying him. He giggled when the wind came up and said "The wind tried to blow over my race cars. The wind wanted to play with my race cars, but they are mine!" It was adorable.

We loaded up the car and headed to school!

I was a little worried what this blood work was going to come back at. With a huge drop from last Thursday to Tuesday and the small stomach bug he has going on I was very concerned that we were going to be in trouble. But it seems like the infusion was perfectly timed. His counts came back at 224 today! A 10 point increase from Tuesday. Not great after an infusion, but I'll take it. Any up is better then a down!

Plan: Next blood work will be on Friday 3/17. Levi has a specialist appointment on Thursday 3/16 with another doctor so we will be out of town.

March 7 - Infusion #24

March 7 - Infusion #24

We got over to the infusion a little early as Levi was up early and as I am now taking a class on Tuesday nights and due to some current car troubles on Jay's side we needed to do infusion and then drive home from Lebanon with enough time for me to turn around and drive back to Concord.

We had told Levi that if he was a good boy this morning that there would be a surprise for him! So he was very good. He went right in to the jungle room and took off his jacket and his shoes. Then he went right over to do work with Nurse A and he set pretty still for everything. Nurse T was ready for him right after that so we went in and got him accessed. Levi was being silly and wanted to try the mask on! It was cute! The access went great as always.

Since Dr. V hadn't put the orders in yet we couldn't get his Bennadryl started so Levi was off to the playroom. The child life specialist was in there getting everything ready for the day and she got out the playdough stuff for Levi including new play dough. He had a blast making things with that.

 After a few minutes of playing play dough Dr. V came in to talk to us. Levi was very concerned with telling him that he was playing play dough. I think he was basically telling him to go away and that he didn't want to talk to him right then or get prodded by him right then as he was busy. Of course we didn't really listen to him. Dr. V talked to us for a few minutes and then he looked at Levi. Levi's rash has been much worse lately so we talked about that for a few minutes. Otherwise everything looked great.

Nurse T came in with his bennadryl and got it started while Levi was playing nurse with the babies. It was very cute! He was doing blood work on the baby while Nurse T was playing with his tubbie. It's nice to see that he isn't afraid of any of what is going on and will even mimic it in play. Since Levi was being very good playing we decided to stay in the playroom even though he was connected.

 Levi and Daddy were playing dinosaur. The dinosaur was getting Daddy's pants leg. Daddy asked Levi if the dinosaur could get the ninja turtle (that is on Levi's sock) thinking it would be funny/cute for the dinosaur to eat Levi's toes, but Levi outsmarted him. He said "yup" and proceeded to reach down and take his sock off and shove it in the dinosaurs mouth while saying "roar" and "munch munch" it was super cute!

It wasn't long after that that his plasma was ready so we took the opportunity to go potty while Levi wasn't connected and then he got hooked up to the plasma. We did a few laps around in the wagon. A trick when Mommy is pulling the wagon, Levi is sitting in the wagon, and daddy is pulling up the rear with the IV pole. But we did it and had fun. As it was getting close to 10 (the time that Daddy needed to go meet Levi's surprise) we decided to head back to the room with a snack and a movie. Levi insisted on Planes! We settled in to the chair.

 It wasn't long before Levi was bored watching his movie. He asked for bubbles. Nurse T brought in this pretty cool bubble bear, which would have been really awesome if it had worked well, which it sadly didn't. But we blew enough bubbles to make Levi happy.

 The 15 minute vitals check came and we were all noticing that Levi's cheeks were bright red! We took a look at the rest of him and he looked ok. His blood pressure and temperature came back well and he was being a pretty good boy. A typical toddler, not the hyper can't sit still, itchiness. So we decided to continue on at the elevated speed with a little extra monitoring.

Since that pump is only used for Bennadryl, it's not even turned on during plasma, so he can push all the buttons he wants. 

 Levi wasn't really up for his movie, and his surprise needed a snack so we got out the art supplies. Levi started coloring and doing stickers.

 And then his surprise came!!! Nonna (aka Joyce, Jay's mom) stopped by!! She happened to be at the hospital with Gary as he had some appointments and she was just waiting around, so she came and spent some time with Levi.

Levi being silly and showing off for Nonna. 

The infusion was flying by. I took a look at how much time was left on the plasma machine and realized that if we were going to do lunch we needed to do it soon. Since Jay was enjoying being with his mom I decided to make the trek down. This was the first time that I have ever left Levi while he was hooked up to plasma for longer then to get a drink from the fridge or to go pee. It was only 12 minutes, but it felt like a long time! But at the same time it was good for both Jay and Levi to realize that Mommy doesn't always have to be there.

We finished watching planes and ate lunch. Nonna headed out to go get lunch with Gary. Before long the infusion was done and we were getting unaccessed. Levi went to the playroom for a few minutes as always after. The little girl from David's House the night before was in there so the played together for a few minutes. Levi also ran a bunch which is good to get some energy out. Levi was able to pick out a brand new book for Dr. Seuss' birthday, thank you to whoever donated those for the kids, we added "One Fish Two Fish Red Fish Blue Fish" to our collection. Then we headed out.

Levi and Crayon making a run for the door.

 For the first time in 4 infusions Levi fell asleep in the car! After only about 15-20 minutes in the car! It was crazy! But muchly needed for him.

This infusion was a little strange for Levi. Levi generally averages about 7 juice boxes during an infusion plus 1-2 sippy cups of milk. As we were getting ready to leave I realized that his milk sippy was still full and so was his juice. He had barely drank 2 tablespoon fulls the whole day! Very strange. Otherwise things went well! We will be back in three weeks. We discussed our need to move around some infusions due to our upcoming vacation and Dr. V was very open to that and so we made a plan. It's nice to know what will be happening.

March 6-7 - David's House

March 6-7 - David's House

The drive to David's House was a pretty typical drive. Nothing overly exciting. We stopped in Chichester for slushies! Levi was excited about that as their machine has green! We don't stop every time, but sometimes it's a nice treat and a nice part of the way stop.

We got to David's House and headed in to check in. We found out that we were in the insect room. A brand new room for us, so that was fun. They had a cot all set up for Levi. He was pretty excited about that. It had baseball sheets and a piglet pillow case! He was pretty excited to go play so getting him to take a picture wasn't easy, but here he is sorta looking!

 We headed downstairs to find dinner. Their was a meatball casserole thing, some mashed potatoes, and corn. Levi ate very well! And then he was ready to run around. We found "his" planes and he was off to zooming around with them. He was a bit of a crazy man. He knows that he has to stay on the main floor while Mommy and Daddy are still eating. Which he did, but he was definitely running like crazy!

Running so fast that the picture is blurry!

Once Mommy and Daddy were done eating we headed downstairs to play. There were two other kids playing downstairs. Levi had a blast having others to play with. Ironically all three of the kids had on orange shirts! It was crazy! Levi and the little boy got a little crazy and hyper together and were running around "shopping" in other words running the shopping cart and the baby stroller into each other. I don't have any pictures of them playing as I try not to post pictures of other children on the blog without the parents permission.

It was time for Levi to settle down a little and he wanted to play with me so we spent a lot of time with magnet blocks! He loves these things! He built a huge tower all by himself. The concentration on his face while he is building is crazy!

Getting frustrated with Daddy who was adding triangles to his tower when he only wanted squares!

Building it super tall!

After he was done building we spent quite awhile sorting and stacking and making rainbows. He had a lot of fun making the piles.

Then it was hyper time again. The little girl went to bed so it was just Levi and the little boy again and they had a blast on the slide. The two dads were building towers at the bottom of the slide and the boys were taking turns knocking them over. Eventually they were team knocking them over with Levi sliding down the slide and the other little boy knocking them over at the bottom, this caused some hide collisions, but it was all giggles all around!

After the other boy went to bed Levi spent some time playing on his own and we spent some time cleaning up the playroom. Levi enjoyed the alone time some.

 It was getting close to bedtime so we headed up the stairs for stories. There have recently been all kinds of good board books donated in memory of a young girl so we picked out six and read them. Daddy ready 2 and Mommy read 4.

 Then we headed up the stairs for bedtime. Things were going ok. Not great, but ok, when we heard Levi start jumping in the room. Jay went in to settle him down while I was sitting on the floor in the hallway, a common thing for us to do. It got quiet in the room and I assumed that Jay had gotten him to sleep. More and more time went on and Jay wasn't coming out. I was starting to get a little concerned as Jay had taken the key in with him. 30 minutes later Jay comes out of the room rubbing his eyes! Yup thats right, he had fallen asleep with Levi! Thankfully he woke up or else it would have been a rough night for me.

Jay and I headed downstairs for a few minutes of adult time. This is generally when we eat dessert as well but the kitchen was very lacking in dessert. And what little dessert there was (girl scout cookies) disappeared in the hour or so that we were reading stories and putting Levi to bed. Jay was very angry about this! After a few minutes of adult time I headed upstairs to bed.

Levi slept through the night!!! The whole night!!!! It was a restless sleep and he moved around a ton, whacked his head a few times on the window sill, and slept sideways in his bed using the windowsill as a pillow (I moved him when I saw him that way), but he never called for me! This is a first in over six weeks!! He was up at 6:12am and climbing in my bed, but i'll take that any day!

After cuddling with me for a few minutes he asked if I had brought my iPad as he knows that there are episodes of Paw Patrol on it. I had, so I got him settled in his bed with my iPad while I took a few minutes to wake up.

Then Levi and I headed down for breakfast. Breakfast for Levi at David's House is hit or miss. Some days he eats and drinks a ton, other days I think the chipmunks outside ate more then he did. Today was definitely the later. I could barely get him to eat anything. I just kept giving him options to try to get him to eat. And as far as drinking anything forget it. He barely took half a sip of milk.

After breakfast we all finished getting ready. Levi and Jay spent a few minutes in the playroom while I cleaned up the room. We headed out. Levi saw his friend from the night before in the living room and they hugged goodbye, it was so sweet! I love how quickly kids can make friends. There is no judgement, just a "hey, you are my age/height, let's play!"

Then we were off to the hospital. Thanks again for everything David's House, we will see you in three weeks!