May 17 - Infusion #9

May 17 - Infusion #9

We got to the hospital and got downstairs to check in. Levi was a little crazy man. The play room is still closed but he has gotten used to that, and was fine with just the toys in the hall way. He was running up and down the hall with the Cozy Coupe and the baby doll. He had the place to himself as he was the only patient scheduled for the morning. So we let him be a little crazier then normal.

He got vitals with Nurse A. That went about as well as always. He really doesn't like having to sit still for his blood pressure and oxygen monitors. And he gets very angry if you try to hold his arm. We were assigned the Jungle room again, and Levi put his stuff in the room. Nurse K told us that Dr. V wanted to talk to us before accessing Levi's port, so we settled in his room for that.

Dr. V can into the room and talked to Levi about how he was feeling and how things had been going. Then he set down to talk to us. He wanted to discuss Levi's treatment plan. At this point we are infusing every 3 weeks no matter what his numbers are. Dr. V wanted to discuss with us if we thought this was a good idea to continue, or if we wanted to go to a more "lets see how things go" attitude and just watch numbers and only come for an infusion when needed. We discussed with him the stress of this and what the benefit was. He told us that the only real benefit is that it reduces the amount of times he gets infused, which would minimize the potential allergic reactions he could have. We once again discussed other medical options if he continues to have reactions to the infusions. Options such as a medical grade plasma, which is essentially a bunch of people's plasma all mixed together and tested more rigorously then each individual persons plasma is. Or Factor 8, which is an off label use, so we would have to get it approved by the insurance. After discussing with him, both Dr. V and Jay and I felt that the best course of action was to stick to our current plan. It took the guess work out of his infusions as well as limited the risk of his counts dropping dangerously low. He said that we would revisit the conversation after another allergic reaction occurs or when Levi gets older and can more reliably tell us how he is feeling.

Nurse T then came in to access his port and get the party started. Port access went great as per usual. He was a little fussy being held for the needle to go in, but otherwise was great. And the port continues to work wonderfully. Blood return is easy peasy!

Waiting in the chair for the stick. 

Levi got his first dose of pre-medication Benadryl with this infusion. He got 0.5mg/kg. This is a half dose and allows us to hold on to the other half dose in case a reaction occurs and we need to push it immediately. It goes in through his port and starts working fairly quickly. We can not start the infusion until it has begun to work. Nurse T said that she wanted to wait about 30 minutes, but was really looking for him to get over being fussy and move on to just being kinda spacey. A half dose would not knock him out the way that a full dose does, but he would be a little out of it.

During the wait we headed over to the playroom where "Flashes of Hope" was doing family photographs. As we didn't know this was happening we all just had on t-shirts and hoodies, but that's ok. A picture is a picture. Levi was very cranky during the pictures, so I am not sure how well they will come out, but hopefully they will be ok. We should get them in about 6 weeks.

Levi was a crank bucket! Lots and Lots of no's and yelling. He didn't want anything. The Benadryl was definitely starting to work. It was making him feel a little loopy, but not enough to make him sleepy, but he knew he didn't feel right either. After about 25 minutes, he got so that he was just blah. We put on a movie and he just set and watched and stared off into space. At this point we could start the plasma. Today's plasma is AB (Levi is O+), this isn't the first time that he has gotten AB, but it does mean that they did not have any O+ in the building in the size container that Levi needs, so please continue to give blood whenever you can! :)

Nurse A trying to get vitals again before the plasma starts

Nurse T gave Levi the thermometer to play with.

Levi just chilling with Daddy and watching some TV.

We were all a little cautious this time, so we started the infusion a little slower then usual. At the 15 minute check everything was still looking good, but of course it was last time too. We decided to bump the infusion up to the 100ml/hr that we usually run it at, but the nurses were definitely around much more then normal and making sure that Levi was doing well. We watched movies and hung out. Levi got hungry so daddy headed down for some lunch and we all just chilled in the room.

Levi's blood work came back at 205 today, so still a very good number. But we are still all happy to be bumping it up a little higher.

With about 20 minutes left, Levi was starting to get very fussy so we decided that a change of scenery was necessary. We headed out into the hallway with Levi's pole. He did pretty well walking around with it, and even learned that he could still get in the Cozy Coupe as long as daddy stayed close behind with the pole.

Driving the car down the hallway.

Riding in the Cozy Coupe, with daddy driving the pole behind. 

"Look Mommy, I hid my shoes"

As the infusion was winding down we talked to Nurse T about a few things. Namely a better way to get ahold of them for non-emergency questions. Receptionist S doesn't like to put us through to anyone and it can be very stressful. We also asked about a list of over the counter medications that Levi can have, and she said there isn't a standard one, but we can always call. We discussed how always calling wasn't really an option and we ended up walking out with Dr. V's e-mail address, and the OK to use it. So that is another nice communication tool.

The infusion was finally done and we headed on our way. We waved goodbye to Nurse T, Nurse K, and Nurse A. Put away all of the things we had borrowed. We stopped at the entrance and dropped of our badge and then we were outta there.

Returning his badge. 

"Let's Go Daddy!"

Levi was asleep in the car before we were even on the highway.

Levi woke up on the way home a little after Concord. So he took a fairly short nap, but short is better then none at all. I needed a drink so we stopped at the gas station in Barrington and Levi "conned" me into getting him an ice cream. ("Ice Cream Please Mommy" is the same thing as conning right?!?!) I think he enjoyed his ice cream. This is what he looked like when we got home:

The first bite.

Small bites!

The after effect. Showing me his hands. Look at his car seat buckle too!

Next Plans: We will do blood work again on Thursday and another infusion in 3 weeks. No reaction to this plasma, so that is good. Once he has had a reaction he is much more likely to get another, so to know that he did so well this time, is great!

May 16-17 - David's House

May 16-17 - David's House

We picked Levi up from daycare and headed on our way to David's House. Levi did pretty well on the drive only getting a little fussy near the end. We stopped for Chinese food on the way there. Levi did a great job eating. :) With the summer approaching we are getting to David's House with more and more light still available, so that is nice, and gives us the opportunity to stop for a sit down meal without having to feel like it is getting too late.

The first thing that Levi noticed when we pulled in the driveway was that they had put all of their outdoor toys out. And boy do they have a lot!! It was neat to see. We had told Levi that we needed to get checked in and our stuff up to our room before we could play outside and he was ok with that. So in we went to check in. We were assigned the horse room this time. Our first time on the main floor. The layout of the room is identical to the dino room, but the decorations are a little different.

As soon as our stuff was set down Levi was out the door and ready to go outside. We played outside for well over an hour. Levi played on every riding toy there was, he swung, and slid. And had a great time.

Levi wanted a ride in the wagon and climbed in. We started pulling him when all of the sudden 4 deer came running across the road and played in the field right above the house. Levi had fun watching them run around and play. When we were out riding we investigated the grounds a little more and noticed that there is a cool little garden and bench out back that we had never seen before. Levi wanted to sit on the bench.

Levi was starting to get cold and it was getting close to bed time so we headed inside for a last drink and snack before bed.

Then we headed to our room to go to sleep. Levi did a good job of falling asleep tonight, and was out in about 15 minutes.

Good Night! Sleep Tight!!


Levi was up the next morning fairly early. He set in my bed and watched an episode of PAW Patrol before heading to the play room with Jay. He was up so early that the slide room in the play room wasn't open yet (it's locked at night for quiet and safety sake) and Levi was very upset by this. So we headed to the kitchen for breakfast. Levi didn't do so great eating, but did get in enough to not be too fussy until lunch time.

Then we headed over to the hospital for our appointment.

May 16 - Blood Work

May 16 - Blood Work

Normally we wouldn't do blood work today as we have an infusion scheduled for tomorrow, but with Levi's low counts on Thursday and his rough weekend, we decided it wouldn't hurt. More information is always better then none.

It was a rough morning. Levi had nightmares and really struggled to go to bed. I finally got him down around 10:30 by holding him and letting him cuddle in our bed. I worked from 8:30pm to 1am and then finally climbed into bed. At 3:30am Levi was back up and screaming, so I was back into his room to hold his hand until he fell back asleep. he just didn't want Mommy to leave. And then the stinking alarm goes off at 6:45. This is gonna be a long day!! I got up and got ready, went downstairs and prepped everything, and then went back upstairs to wake up Levi around 7:30 (I hit snooze a few times before getting myself out of bed). I walked into Levi's room and turned the light on and he didn't even wiggle. I picked out his clothes, and then went over to wake him up. I turned off the monitor and said "good morning Levi" he looked at me and rolled over. I prepped his meds, got him to take them, and then rubbed his back for a minute before picking him up and holding him. I said "i know how you feel buddy, Mommy is tired too". We had a quiet/uneventful morning getting ready. He wouldn't let owl go, and I wasn't going to fight him, so Owl is currently resting in my car waiting to pick Levi up from daycare. We went downstairs and Levi went to daddy who put him in his car seat while i put my shoes on and we were out the door on the way to the lab by 7:40.

It was a quiet trip to the lab with Levi listening to Pandora kids and I was driving. The lab thankfully had no line no waiting and we got right in. Levi said good morning to Nice Nurse and then went in to pick out his band-aid. He picked Toothless and was very excited about it. We got settled into the chair to wait, and Levi got upset. He said "Hiccup ride Toothless, Hiccup ride Toothless" I told him that the band-aid didn't have Hiccup on it, just Toothless, and he settled back down.

The stick didn't go well! He cried for the first time in a long time, well really more whimpered then cried. She couldn't find his vein. She finally was able to find it, so that is good. She got the green tube filled no problem, but then as she was trying to fill the purple one, it just wouldn't fill. She kept moving his arm to get it to fill, it was rough, but Levi did much better then he could have at 23 months!

As soon as the band-aid was on he was off and running to the treasure box. He picked out a blue Kaleidoscope which had a fake spider inside it. He was very upset about the spider and didn't want that, but was pretty happy about the Kaleidoscope. He doesn't quite understand how to close one eye and only look through the other one yet, so it's cute to watch him try to use it.

Levi and his Kaleidoscope.

We were off on our way to daycare. It was another quiet drive, I looked back at one point and Levi was almost asleep. Then he started using his Kaleidoscope like a periscope and said he was "Jake" but there were "no people". We got to daycare and dropped Levi off. I spent a few minutes talking to Miss T about his weekend and i was off to work.

Based on the last labwork and the fact that he is covered in bruises I was expecting his numbers to be quiet low today.  So when I got the call around 1pm and his numbers were 212, I was shocked. Wait 212, that means they went up on their own from last week to today. After having a huge drop last week, now they went up. What in the world is going on!! Talk about stress!! There is no rhyme to reason to this condition and it is so frustrating! There is no link to anything, there is no way to guess what his numbers will be, there is no nothing. I just want to scream!

Levi picked me flowers over the weekend and made things better!! 

May 12 - Blood Work

May 12 - Blood Work

This morning started off a little lazier then some. I was able to completely get ready before Levi woke up and then in fact had to go and wake him up! He was very sleepy this morning and a little on the lazy side. He was sitting in his crib and said "can't reach it mommy can't reach it" as he was barely holding his arm out. I said "can't reach what" and he said "owl" and almost started to cry. I kinda gave him a look and said, "owl is at your feet, bend in the middle and you can reach him" and sure enough he got owl, grabbed him, and rolled back over to go back to sleep. I got him up and into the bathroom to start getting ready. Today was PJ day at daycare so Levi got to put on his puppy shirt and pup tag pants and he was excited!!

We got in the car and headed to Dover. It was an uneventful drive there. Levi had his puppy cup so he was happy about that, and the ride was fairly quiet. We got to the lab and headed right in. There was no line no waiting. Levi picked out his band-aid and picked the "bunny one" today, which was bugs bunny. We got up in the chair and all ready to do the stick when the little boy and his mom who had gone before us came out of the bathroom, the little boy looked like he was going to faint or lose it, so Nice Nurse undid the blue strap on Levi and took off to go help him. Then she came back and started Levi's stick. He moved as soon as he saw the needle and she missed the vein today, but she got it in after a second. Not sure what made him move today he hasn't done that in a long time.

When the draw was done Levi hopped down and off to the treasure box. He picked a yellow squirt gun and was so excited. He gave Nice Nurse her high five and said "See you Thursday" and we were off to the fountain.

After a second at the fountain he asked for a donut and I said not here, Miss T has texted an SOS need for coffee and mommy needs gas so we will stop at Dunkin Donuts on the way to daycare. On the way to the car, Levi was playing with his squirt gun and was all excited. He looked up at me and said "mommy squirt me, mommy squirt me" and had this HUGE smile on his face. I said yes, tonight in the bath we will play!

We drove to Dunkin and then to daycare where drop off could have gone better, but wasn't the worst I have ever seen. Levi wasn't quite as messy with his donut as sometimes either.

We got Levi's numbers back around 1:00. His count is 197!! Not good. A 61 point drop since Monday. We called Dr. V to see if he wanted to move up the infusion since he said his new limit was 200. We finally heard back and he doesn't want to, so we are still scheduled for Tuesday. It is going to be a long weekend of worrying and watching his every move. I don't want to see how low his count will be by Tuesday :(

May 9 - Blood Work

May 9 - Blood Work

Levi slept in a little this morning, so that was nice except it put us a little late for the morning. Levi and I headed off to see Nice Nurse as soon as we got up and moving. The morning drive was very uneventful.

A fun sweatshirt!! 

We got to the lab and Nice Nurse was waiting for us! No line no waiting! Levi said "Good Morning P" (Nice Nurse's real name) and gave her a big smile! We headed right in and Levi picked out his band-aid. Today was back to PAW Patrol. He specifically requested Chase, so it took me a minute to find one, but we ended up with Chase, Marshall, and Ryder.

Levi climbed up into the chair, and lowered the bar by himself. He whacked himself in the head in the process. He looked up at me and said "I'm Ok Mommy". Then we started talking about Nice Nurse's puppies that are on the wall. Then he saw the tubes sitting in the containers by color and he tried to reach for them and said "my tubes". I told him Nice Nurse had to get them, but asked what color she would get, he said "Green!! Purple!!" So he clearly knows what his tubes are.

The stick went great as normal. Nice Nurse hit the vein right away and the blood started going in. As soon as the band-aid was on he was off and running to the treasure box. He tried to pick a pencil again, but I convinced him to pick a green squirt gun instead (I only need so many fish pencils in my car!) Levi gave Nice Nurse her high five and said "See you on Thursday!" and we were out the door.

Levi playing in a box over the weekend.

We stopped at the fountain. Then Levi asked for a donut. I said, not today, that I had fruit for him in the car. At first he was upset, but then I told him it was watermelon and he was pretty happy to get to the car!

Numbers came in around 11:00. His count was 258. So only a 10 point drop since Thursday. That is great!! Numbers again on Thursday. We are pushing his infusion to 3.5 weeks in order to get us back on a Tuesday so it is very reassuring that his numbers are staying so high even though he has a cold!

May 5 - Blood Work

May 5 - Blood Work

Today's blood work was back to the normal morning blood work with Levi and Mommy. Levi did a great job as per usual. We got to the lab and there was no line no waiting. Levi went right in and picked out his band-aid. He picked out Dory, from Finding Nemo. They have been watching Finding Nemo at daycare and he has been all in to Dory.

The draw went a little more complicated then normal. His vein decided to move and Nice Nurse had to wiggle it around a little in order to get it in the vein. Levi didn't even make a peep. As soon as the band-aid was on he was off and running to the treasure box. He picked out a pencil and pad of paper again.

Then it was off to find the fountain. Levi spent a minute looking at it and then asked for a donut. I said sure and we went over to the little cafe. He picked out a plain donut, with chocolate frosting, and sprinkles. We headed to the car and Levi climbed in and then started eating his donut.

The first bite! Notice how neat he is!!

We arrived at daycare a little messy! Miss T always loves that! She quickly grabbed a wash cloth and cleaned him up.

About half way to daycare. Notice there is no more frosting, and we have moved on to actually eating the donut.

Numbers came in around 11:30 am. His count was 268! So about a 40 point drop between last Thursday and this Thursday, so not bad for the fact that he has a cold. We will check numbers again on Monday.

April 28 - Blood Work

April 28 - Blood Work

Today's blood work was done on the drive back from Camp Sunshine. Levi was a little over excited from the long drive and our trip to Build a Bear on the way home.

Levi and Marhsall in Marshall's new car!

We got to the garage tunnel and showed Daddy where we normally park. We jumped out and headed inside. It was after lunch but not as late as last week. We needed to do our quarterly endo blood work as well as our usual USS blood work so we had to register. Levi was a little crazy as we were waiting at registration. He likes to try to color on the pads that you sign on. Thankfully this paperwork is pretty straight forward, and I had the physical lab slips (not trying to be faxed over) so the registration process went fairly stream lined.

Playing with the signing pad. 

Then we headed over to the lab and went right in as there was no line no waiting. Levi picked out his band-aid, and we climbed up in the chair together. Daddy was with us again this time so we were able to get a few pictures that would be impossible for me and Levi to get without someone else.

Picking out his band-aid.

Waiting for Nice Nurse. See his arm in position already?! He knows what to do!

Levi did great during the blood draw as usual! He was off and running to the treasure box as I was finishing up the last name and dob information. Today he picked an Orange Squirt gun from the treasure box.

Showing off his new squirt gun!

We headed home and grabbed lunch on the way and then put Levi down for a nap.

Dr. Kim called herself a few hours later with the results. It's always a little nerve wracking when the doctors call as usually that means something is going on, but this time it just meant that she saw the results come in and decided to call. His numbers came back at 309!! A Great number. We also talked to her about if there is anything that Levi can take for his cold, and the short answer is not really! This little guy has a LONG road ahead of him when it comes to colds. He can't take any ibuprofen or any of the phens due to his platlet count and that pretty much rules out ALL cold meds. So we are sticking with tylenol and warm baths and a humidifier. Hopefully this cold will pass quickly.

Levi's endo results came in on Wednesday May 4th. Lowering his meds 6 weeks ago put his Free T4 into range! But it put his TSH out of range, higher then we have seen it in a long time. So the frustrating news there is that 44microg is too much but 37.5microg isn't enough. And there isn't a pill option in between. So it seems like we are going to make a middle of the ground pill option but alternating the meds. So Three days a week he is on one dose, and four days a week he is on the other. Hopefully this will regulate things. We will check numbers again in 6-8 weeks.

April 24-28 - Camp Sunshine

April 24-28 - Camp Sunshine

I could write a book about how AMAZING Camp Sunshine was! We met some amazing people, had some great family time, relaxed, played, took naps, and were just generally able to be normal!! I can not wait to go back next year!! :) Levi had a blast! And has asked about it several times since "Go To Camp Sunshine?" it's very cute, and I know he had a good time too!
Because I don't want to write a book, I will just leave you with a few pictures! Enjoy :)

On Our way 

Look I can touch the ceiling!!!

The room has a rocking chair, this is a nice place, i think i'll stay here!

Pet the Moose!

Mike and Sulley!!!! 

Cake before dinner?!?! Yea, I think I'll stay here!

He played a little hard! 

Puzzle time!

Talent show! 

Doing "Hands Up" at the Masquerade ball! 

Dancing tired him out!

I think I'll take this bear home with me!

Umm... Mom... The sweatshirt ate my hand!

We got a little snow. But that didn't slow down this New England boy! 

All dressed for Parents Night out. 

They had lots of kid food on kids only dinner night!

He fell asleep in the Tot Lot with his boots still on. But he transferred to his cribby quite well. 

Wide awake and ready to go the next morning!

A little coloring!

A lot of sliding!

Playing Diggy! 

Eating his kit-kat!

His wish boat! 

The tots were minions at the celebration ceremony! They were so cute!

Playing! 

Last night!

Taking his own suitcase to the car. 

Wait! I want to go back in!! 

Levi sized door!

Thanks Camp Sunshine!!

Headed Home!