January 23-24 - David's House

January 23-24 - David's House

We got a call on Sunday night from David's house, never a good sign. They said that they were full! And as of Sunday night they didn't have a room for us for Monday night, but that there was a chance that some people were checking out so we could call and check on Monday. Jay and I talked about what we were going to do and what the options were. Levi's appointment on Tuesday isn't technically until 10:30 so we could drive up Tuesday morning if we had too, though that does make for a long day. We also talked about getting a hotel room with a pool and keeping Levi entertained that way. We had some options. On Monday morning Jay called David's House and talked to Jaye. She said "I got you guys a room, no problem!! See you tonight!!" YAY!! We are in! This will make for a much better evening. We love that Jaye always seems to get us in!

I picked Levi up from Nursery School and told him that we were headed to David's House. His response was "YAyy... We have to get Daddy first!" I said that yes we would stop and get Daddy and then head to David's House and his response was a screaming "YAY!!!" and jumping up and down.

The drive up was fairly uneventful. Long as usual but not bad. Levi ate snacks the whole way so wasn't very hungry when we got there, but it kept him happy! He watched Backyardigans the whole way.

We got there and got signed in to the lion room. Levi was hoping for the dog room, but we were in Lion. We got situated in the room.

Levi selfie!! Sent to Grampa to say that we had made it safely.

 We headed to the kitchen to find dinner. We had been told that there was chicken alfredo and apple crisp on the stove. Levi wasn't hungry and I don't push it while at David's house so he was playing with the trains while Jay and I ate. He gets so excited to see "the trains that we bought for David's House" every time we go!

Then he noticed that we were eating and asked for food. I asked him if he wanted some chicken and pasta and he said no. He asked for ice cream and I said I would check. They had some vanilla. So that is what Levi had for "dinner".

 Then Levi was ready to go downstairs. Jay was done eating so he took him down to play while I finished eating and took a minute to breath (I drive up, so I haven't had any real off/down time, while Jay has just set in the car for the 2 hour drive). After a few minutes of quiet I headed downstairs to make sure that the two of them weren't killing each other, and I was able to view this sweet moment! Jay and Levi were reading books. It's not often that Levi wants Jay to read to him (besides "Today's Story" before bed) so it was really nice to see this. I crept in behind them in order to get this nice picture.

 After stories, Levi wanted to start playing with the different toys in the buckets and doing arts and crafts. The first box he found was the stamps. Last time we were at David's House Jay stamped his hands, and now Levi thinks thats the cool thing to do. So here is our little Stamped boy! He had a blast, and it's all non-toxic ink, so hey, why not!

 Then it was off to the stampers. Levi and Mommy both made pictures. It was lots of fun!

Our finished pictures!

 Next Levi wanted to play with the foam magnet blocks. He doesn't like the circles to stay in the squares, so he finds all the squares with circles and removes the circle. This time we then put all the circle less squares together!

Helping to build with the circle less squares.

Yes he is sitting on the table. He says he couldn't see into the box. 

 After the foam magnet blocks we moved on to the plastic magnet blocks. We made a huge tower with them. Levi did a great job helping to build it! And he thought it was hilarious when a block would fall inside and stick to the sides.

After the magnet blocks we moved on to the slide. We built towers again that Levi knocked over when he slid down. He had a blast! He thinks it is the most hilarious thing ever to knock them down while he slides. 

 After we had knocked over the towers it was time for bed. Levi picked out a bedtime story from downstairs and carried it up the stairs all by himself. Not the greatest picture, but you can see the corner of the book under his arm.

 Levi was a very tired little boy. It took a little while for him to fall asleep but not overly long.

 The next morning Levi decided that 6am was a great time to wake up. He climbed in bed with me for about 30 minutes and sorta cuddled before he decided he was just up for the day. It was Jay's turn to go downstairs with him crazy early, so down they went. They watched some PBS and ate breakfast.

Enjoying some Curious George

We didn't rush around to get ready today. Since his appointment wasn't technically until 10:30 we didn't want to go over too early. The nurses have all told us that we can come over whenever, but we didn't want to be in the way of their 8am appointments either.

After we got dressed and were heading out we stopped in and talked to Jaye and Kim. I wanted to thank Jaye for getting us in. She explained that they are at capacity almost all the time lately because there are so many NICU babies right now. She said that the previous weeks they had 10 turn aways. That is more then they had the whole past year! We are so thankful for David's House and so grateful that we were able to get in. With so many long term stays we are pretty sure that David's House probably isn't getting the intake of funds that they would with more turn over. Therefore we are taking up a donation for David's House or you can donate directly through their website. We love this place and we want to do every thing we can for them!!

Then it was time to head over to the hospital! We will be back in three weeks and will gladly bring any donations that people want to send with us or are willing to contribute!

January 19 - Blood Work

January 19 - Blood Work

We got to blood work this morning and had to wait a few minutes in the waiting room. Levi did a pretty good job waiting. The waiting room was empty so he bounced around from chair to chair. Nurse St was there, we have seen her before but not often.

 It wasn't long before it was our turn to head in. Levi ran right in and picked out his band-aid. A "Minjen" turtle (aka TMNT)! Then he climbed up in the chair. Nurse St came over, she asked if we needed to call someone or if he was good, and I said, he's great, should be fine to do by ourselves. This is where it all went down hill. Nurse St picked out a purple tube and a yellow tube. Now Levi knows that his tubes are supposed to be purple and green and he will not hesitate to tell any nurse that! Technically the nurses are not wrong to pick yellow instead of green, yellow is just the non-stat version of the test, however since his purple tube is stat his other one should be as well. So he starts trying to tell her that it should be green. I am not sure if she didn't hear him or didn't understand or was just ignoring him but she kept going. Then the hospital had gotten in new children's tourniquets, they were orange instead of blue. Levi did not like that she was using this. He kept telling her that he wanted a blue tighty tight, a blue one. Again I am not sure if she didn't understand what he was trying to say. P and him had their own language of things which he continues to use. So Nurse St got the needle and prepped to start. She wasn't overly excited about the vein, but she was gonna go for it. I was holding Levi and we did our standard attempt distraction thing. Levi was not impressed that I was holding him and kept saying "No, Don't hold me Mommy, Don't hold me!" I still do not know exactly how he did it, but he got his left hand out of my hand that I was holding him, in the same way that I have held him for a year now and grabbed the needle just as Nurse St was getting ready to put it in his arm. It stuck his finger just barely before she could react quick enough to push the button to retract the needle. At this point she said we need to call one, and I didn't disagree. I told her that Nurse Pa can usually do him pretty well and they are starting to have a decent relationship, so she said she would call for her.

Nurse St asked if I minded if she took someone else in the other chair while we waited, I of course said no that was fine. As soon as the other lady walked in Levi was all about needing to go potty, so in to the bathroom we went.

It wasn't long before Nurse Pa came down from wherever she works. She had brought Levi stickers so that made him smile. He climbed back up in the chair and looked at his stickers. Then she looked at his tubes and said "hmm... something isn't right" and he was like "no, purple and green!" so she switched the tubes for him. Then she looked at the tighty tight and saw that it was orange and asked him if he liked it, he said no he wanted a blue one and she pulled out two blue ones. One for him to play with and have and one for her to use. She is definitely learning that he is a creature of habit and she plays to that! Nurse St helped to hold Levi's arm and Nurse Pa got ready to stick him. She was almost there when he lost it again yelling "there's no tube, mommy there's no tube". She hasn't put the tube in to the end of the needle line yet, it isn't actually necessary until after the needle is in and blood is flowing, but he is very used to it being there. Nurse Pa wasn't even phased by this and just said, "oh right, silly me no tube, it's the purple one right?!?!" and he said "no green first!! green first!!" so she said "oh right, and put the green one on". After that he settled right down and she got the stick on the first try! The draw went quick after that.

Levi headed to the treasure box happy as a clam as if none of the above drama had gone on, and that we hand't been at the lab for close to 30 minutes at this point. It always amazes me how fast he can bounce back! He picked out a yellow squishy frog and was super happy.

While Nurse St was attempting the draw and he was yelling for me not to hold him I had bribed him with a donut so I had to honor that, so over to the cafe we went. He saw the sprinkle donuts and was super excited by them, but then he saw the fruit cups and asked for one of those too. I said, you have to pick, you can have a donut or a fruit cup but not both, you wont have time to eat both on the way to NS. And guess what he picked:

Yup a fruit cup!!! Not the choice I would have ever thought a 2 year old would make, but definitely the healthier of the two choices!! I was very proud of him. And he ate all but three pieces of that fruit on the way to NS and I think he would have finished it, but he ran out of time.

Counts were late in coming in, however Seneca was also having internet and phone upgrades being completed so its hard to tell if it was an issue with the fax being sent late or the fax being received late. Counts came in at 265. Still a great number but it is a 100 point drop since last week.

Next appointment is an infusion on January 24.

January 12 - Blood Work and Reflection

January 12 - Blood Work and Reflection

A year ago today we went to Lebanon for his first appointment with Dr. V post diagnosis. The appointment was supposed to be a question and answer session and some blood work. Levi looked fine. Blood work was taken and we headed home. We never made it home on January 12th though. After making it half way home we received a call from Dr. V, Levi's counts were 6! We needed to come back to the hospital. Levi was being admitted. We were in the hospital for 5 days. Levi had an MRI, and his first port surgery, as well as his first three plasma infusions. That was a scary week and a week that will forever mark our lives of the before vs. after, one of those life changing moments you can't ever go back to the before of.

Levi has had a rough week. He has been a crazy man who can't settle at all. He's been up at all hours of the night coughing and crying. Awake at crazy-o-clock in the morning for the day, refusing naps, and even a biting incident. I was very worried going into today's blood work that something was up. That he was acting up because he wasn't feeling well. The issue of USS is that there are no patterns to anything so any time something is off you immediately jump to the conclusion that something could be wrong.

We got to blood work and the draw went fairly well. Nurse S was not there so that made things a little different. But the nurse who did the draw did a great job. It was quick and easy! Levi picked an orange slinky from the treasure box and we were off to the fountain! He hasn't wanted to stop at the fountain lately so I was a little surprised when he wanted to. But I didn't stop him.

 Because I was being a little sentimental about a year ago, and we were running a little behind schedule I let Levi get a donut from the cafe and a chocolate milk! :) He was so excited to get to have chocolate milk in his breakfast cup (it's a first!).

Drop off at NS went great and I was at work waiting for the results to come in. I was a little on pins and needles just remember the fact that we were not expecting anything a year ago and we got the numbers we got, so who knows what his numbers would be.

Numbers came in around 9am so thankfully I didn't have to wait long. Counts were 352!!!! Wow! What a difference a year makes. We haven't seen numbers like that since a year ago when he was coming off of his three back to back to back infusions! YAY!! That is what I needed. Numbers that show how far we have come in a year! It put a smile on my face and was a great way to start the day.

Next blood work in a week!

January 5 - Blood Work

January 5 - Blood Work

Today's blood work went great. Levi was finally in a much better mood at wake up after several rough days after the infusion. He was back to my happy little boy. The actual draw was done by Nurse S who did an ok job. Levi still isn't her favorite customer and she isn't his favorite nurse, but they seem to have come to a mutual understanding of each other and at least don't yell as soon as they see each other.

Levi picked stickers from the treasure box and was adamant that he stick them as soon as we got back to the car. I found him a piece of paper and he went to town sticking them on the paper. We named all of the fish on the way to nursery school. There was dory and nemo, and then purply, pinky, whitey (who is yellow) and then all the bubbles. He had a blast and it was nice to see him in a happy mood again!

His finished product at the end. I found stickers in his carseat for days though. They weren't the stickiest stickers out there. 

Levi's counts came in around noon. His numbers were 254! So a great number from the infusion. It's always a little alarming after an allergic reaction because it may not work right, or his body may use some of it to heal the reaction therefore making it not work as well. But with a 60 point jump in 2 days we are very happy!

Next blood work in one week!

January 3 - Infusion #21

January 3 - Infusion #21

Today's infusion started out much like any other. But oh was the day to take a turn we weren't expecting!

As soon as we got over to the hospital Levi headed right into the jungle room to put down his stuff and take off his sneakers.

 He went in to do vitals and was being a very good boy. We had our normal not wanting to keep the oxygen sensor on his finger, but overall not bad. Everything was ready for us so he got accessed right away and hooked right up. Dr. V was also ready to see us so he came right in to take a look at Levi. This is when things started going down hill. Since it has been a year the research study that Levi is a part of wanted additional labs done so we had to do those as well as get Levi to pee in a cup, (no problem there I think we would be 100% potty trained if I told him he could pee in a cup every time he went pee, he thinks its hilarious). While I was talking to Dr. V and Levi was still on my lap he got a hold of his line and yanked on it, not a huge deal, just told him not to do that. Then he got a hold of the tube of bennadryl that was going in to him and decided that grabbing that out of the machine was a great idea. This caused all of the bennadryl to go in quicly versus over 10 minutes. Ok, still not a huge deal, a bit of an inconvenience but hopefully it will just make him sleep. That was not to be our luck though!! We switched over to Saline and Levi headed to the playroom to play!

Then it was time to get his plasma started and he was becoming a bit of a crazy hyper out of control guy in the playroom. We were hoping it was the bennadryl reacting and that if we brought him back to the jungle, a warm blanket, a snack, and some planes he would be asleep soon. He really did seem like he was going to sleep for a little while.

But, no sir! Sleep was NOT in our plan. As soon as we even possibly were headed that way we started thrashing around.

We played with our socks! Look at this new way to wear them!

We insisted on peeing about 100 times, just to get our of our chair.

We threw the blanket on the floor, threw Cranberry (the chameleon) on the floor, put our socks on the floor, tried to eat our tubie, tried to eat our line, tried to shut it off, tried to play with the buttons, dumped our snack on the floor, yelled, screamed, kicked, you name it that was our day.

As the infusion was finally nearing completion we ate lunch. But even that wasn't much of a distraction. A bite here and there and a lot of yelling, thrashing, and spinning.

Finally the infusion was done! Nurse K came in to deaccess his port and his port was swollen! At some point he had pulled the needle out of the port and the saline was going into his skin instead of into his port and therefore blood stream! He wasn't complaining at all so it had to only be saline, as when that happens with plasma he screams in pain. After she was able to get his needle back in so that we could put the meds in we spent 10 minutes or so squishing all of the saline out of this skin. It was the weirdest thing ever, but it was definitely all coming out as it was getting smaller and smaller. We then put gauze over it instead of a tiny circle band-aid because we expected it to continue to ooze on the way home.

Levi's counts had come in at 194 for the day. Not a bad number, but the first time we had seen under 200 since before Thanksgiving. Levi headed to the playroom to get out a little energy before the car ride home, and to give Mommy a little breather as I was at my absolute limit.

We got in the car to head home assuming that crazy man would fall asleep right away. But no sir! We have a 96 mile drive home. Levi fell asleep with 14 miles to go! That's right. He stayed awake, kicking, singing, thrashing, and making mischief for 82 miles!!

When we got home I was able to transition him to his bed where he slept for about 45 minutes. He woke up from his nap as crazy as he had gone to bed. He was throwing tantrums all evening, yelling, screaming, throwing himself on the floor, throwing toys, kicking, refusing to eat dinner, it was awful. By 7:20 I had had it. I needed him to calm down somehow, so I decided to put him in the bath tub. Usually that will calm him down and I figured he could play in there for 45 minutes. As soon as he got in he started scratching his legs and arms. He has eczema in the winter but the bath has never affected that before. I let him play for 20 ish minutes and during that time he was asking to get out of the bath every 5 minutes or so. Levi never asks to get out of the bath. In fact usually he throws a fit when it's time to wash. I gave in and pulled him out of the bath and as I was drying him off I looked at his back and arms and they were covered in a rash. Not an eczema rash, but a hive like rash! UGH!! Levi has got to be having an allergic reaction to his plasma. There is nothing else that could be causing this. We called the on-call doctor. It was Dr. C. I definitely feel like we woke her up! Sorry! She recommend that we give him a double dose of bennadryl and monitor him, and call if there were any changes.

After a full search of the house for the bennadryl we gave him a double dose. Then we went downstairs for cuddles and milk until the Bennadryl made him sleepy!

It wasn't long before we were putting him to bed. I checked on him frequently throughout the night. It was a fitful sleep at the beginning but by around 2am he was sleeping quite peacefully. By morning the hives were gone and he was cranky and crazy, but more normal.

I gave him lots and lots of hugs after the hives. I felt so bad as a mom. I had not been the nicest to him all day because he wasn't behaving the way I know he can be and he was driving me crazy. I now know that he probably wasn't feeling right all day at the infusion, but because he is pre-medicated with Bennadryl it was enough to not make the hives come, but not enough to not make him feel right, and since he is only 2 he couldn't explain to us how he was feeling, he just was acting up. I felt so bad! Mommy guilt to the worst at this one!

January 2-3 - David's House

January 2-3 - David's House

Christmas vacation is over and it's time to head back to work. Oh wait, not for us!! One more day of "vacation" at David's House and infusion! This infusion fell at perfect timing with vacation. It didn't interrupt anything over the holiday and by being the day after the holiday it just extends it by 1 day, and Levi doesn't even realize that he is missing school. So it is a win-win for everyone!

Since both Jay and I were off of work for the day we decided to head up to David's House a little earlier in the day then normal. This would give Levi more time to play and he could nap in the car instead of fighting to get him to nap at home and then dealing with him for 2 hours in the car.

We started the day with a play date with one of Levi's friends. They had a blast in the snow.

Then we headed up to David's House after lunch. The drive up was fairly quiet since Levi took a nap. It was a nice quick drive too with very little traffic, due to the holiday and the time of day. We generally hit Concord right at rush hour.

When we got there several of the full time staff was still working since it was before 4pm. They asked Levi about his Christmas. He was very excited to tell them about the Plane that was under the tree from David's House!! This is the "certain something" that went home with us on October 31st.

Notice he has thrown another present aside once he saw the plane, and has ripped the bow off it so he can get on.

Riding the plane! 

Blurry picture because he wouldn't slow down! He LOVES that plane! 

Jaye then told Levi that we were in the Lion room and that there was a surprise upstairs for him. He was so excited. He rushed upstairs. And waiting on his bed was a package! He barely let me take a picture before he started ripping it open.

Jaye and the rest of the staff of David's House gave him his Twinkle Twinkle Little Star Blankie to take home! So that he can always sleep on it!!! He was so happy!

We headed downstairs so that he could play and we could all get some energy out. We also turned the lights out and noticed that once again the light in the storage room was on, so we asked for it to get turned off this time before bed time! :)

Yoga mats make the best roads!

Levi and Jay figuring out how the table goes together and how it becomes taller and shorter.

Daddy was mixing up the animals and Levi thought it was hilarious. 

A little climbing and flipping!

Then it was time to figure out dinner. There wasn't any dinner at David's House tonight, so we decided to splurge and check out the local steak shop that people have raved about. The food was amazing! And the desserts were to die for!! Levi was a little crazy man at dinner, but we got him under control and the meal went fairly well.

We returned to David's House with plenty of time to play still, so back to the playroom we went! We did lots of coloring, building, and book reading.

Then it was time for bed. Levi did fairly well with bedtime and fell asleep decently quickly for him at David's House. I snuck in and tried to get a picture of him sleeping because it was super cute. But oops, the flash was too much. Should have waited another minute or two for him to be deeper in sleep. Thankfully he just covered his eyes and didn't fully wake up.

The next morning Levi woke up super early as per his normal. He climbed in our bed for a little while before Levi and I went down to the playroom to play. I gave Jay a time to meet us at breakfast and he did. Breakfast went ok. Levi didn't eat a ton, but all in all it was good.

Then we were off to get ready and head over to the hospital. Another great stay at our home away from home. Thank you for everything David's House. You make Levi feel so much more comfortable and that makes our lives so much better! We will see you again in 3 weeks!