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.