September 10 - Blood Work

September 10 - Blood Work

NOTE: I know that I am really late on making these posts, but the next few that will come after this blood work post have been difficult to write and I have put them off. The events that happened made me really mad and I had a hard time putting it into words, so I just didn't. I am now getting everything caught up and filling everyone in on the events of the last month. I hope you can all understand my lateness and enjoy reading about the last month and a half of Levi's adventures.


Well today is the day!!! Today we close on our house. Levi is super stoked! His counts were at 190 on Thursday so we aren't at all worried about any problems. He has picked up some sort of a little bug, but hopefully he won't be too affected by it. He had a headache on Saturday after we got home from Story Land and then was pretty cuddly on Sunday and voluntarily took a nap, but he also had moments of being a crazy man so I wasn't too concerned.

We got to the lab and all was good. He went running in and picked out his band-aid and climbed up to play on the tablet. He looked a little pale in the bright lights of the lab, but he told me he felt fine and was excited to go to school.

 The draw went good as always. His arm didn't want to stop bleeding which is usually not a good sign, but I kinda shook it off. Levi headed to the treasure box and suddenly got very gray colored. I was actually a little concerned that he might puke in the treasure box and had him turn away for a minute, but than he spiked back up and I thought all was good. He picked out a truck from the treasure box and got a sticker. Then he gave hugs to P and we were off to the car.

I was a little concerned about him at that point and told him that he should stay home with Mommy instead of going to school. He insisted that he was fine and that he was going to go to school. Against my better thought I drove that way assuming that either he would change his mind or we could talk it out. We got to school (a 15 minute drive from the hospital) and I parked. I looked back and he looked very very gray but was still insisting that he could go to school. It was seconds after he insisted, that he puked everywhere. At that point I got on the phone to Jay to discuss our options. I had a doctors appointment that I had to be at and we had closing at 1:00. I was on the phone when Levi got very insistent that he had to go potty. I rushed off to McDonald's the closest place with a public bathroom. We got inside and Levi was using the potty when my phone rang. At this point we couldn't have been away from the hospital for more then 25 minutes and it was DHMC. That is not a good sign! I picked up the phone and with barely a hello Dr. K says, "Levi's count is at 3. I have no idea what happened but you need to get here now. Plan on staying a few days and we will figure out what to do over night after you are here." Once she paused I explained about our closing and asked if there was anything we could do to push off this by 5 hours. That I would rush up as soon as I had signed on the papers. She wasn't overly excited but agreed that as long as we took him home away from all people and kept him very calm that we could get admitted tonight and go from there.

At this point I was in shock. Levi had been at 190 and dropped to 3! 3!! We have never ever had a number that low. The lowest previously was 6! I called my parents to ask for their help and they came rushing down to watch him while I went to closing and then to go to DHMC with me. It was an absolutely crazy morning. Not at all what I was expecting.

The most heart breaking part of the day was that when Jay picked up Levi at McDonalds so that I could rush to my doctors appointment and Levi could get home to only our germs and family we had to tell him that Mommy and Daddy would buy our new house today but that he wouldn't get to go see it because we had to go to the hospital. He looked up at me with the saddest eyes and said "I know. It's my fault!" as much as to blame himself for being sick and understanding that in his life there are no guarantees. There is no getting excited about things because everything can get pulled out from underneath him. Just because he has a great number doesn't mean that he will the next time. He just had this look of sadness and dejection on his face. It was so heartbreaking. I wanted to scoop him up in a giant hug and make all his troubles go away!

September 6 - Blood Work

September 6 - Blood Work

Happy Thursday!! :) It's another great week! We got to the lab this morning and there was no waiting. Levi went running right in and picked out his band-aid. He picked out a pokemon band-aid and then asked me to look up who it was. He climbed up into P's chair and we snapped our pictures there.

 Then P brought over the tablet and Levi started playing connect 4. Then P started the blood draw. Close to the end of the draw Levi won connect 4 for the first time ever! He truly won!! He started cheering and was so so so excited! He jumped up and down and put his hands in the air! It was the absolute most amazing thing ever.

Then he was off to the treasure box. P had gone shopping since Tuesday and the treasure box was full! Levi was very excited when he took the cover off the box!! He dug around in there and ended up finding green finger rockets!! He was so excited. Then P helped him open them so that he didn't have to have the box anymore.

Since it was Thursday we were off to the donut lady. He walked over to give hugs and then was excited to see that there were several with sprinkles. And that the sprinkles had green ones!! I saw the sprinkles and was a little dismayed that they have gone to fall colored sprinkles. I am not ready for it to be fall yet!!

 Then we were off to the car to head to school!

Counts came in about 35 minutes later today which is great. We were a little concerned about what his counts would be today as he has several nasty bruises, but we were very excited to find out that counts today were 190!! Only a drop of 2!! Hopefully we will level out here in the high 100s for a bit again like we did last time and make it a few more weeks before we have to head up for an infusion.

Next Plan: Blood work again on Monday.

September 4 - Blog Post

September 4 - Blog Post

Happy Monday/Tuesday! Hope you all had a great long weekend. I know we did!!

We got to the lab this morning and there was one person ahead of us. It didn't take long for it to be Levi's turn but we had a second to snap a quick pic!

 He picked out a round PJ Masks band-aid and climbed up to open it. Once he opened it he saw that it was a round Shopkins band-aid instead. He laughed and laughed and thought it was hilarious that a shopkin got in with the PJ Masks. He was still happy about it since he loves the shopkins and it was the strawberry with a green background.

 Then he settled in to play games and wait for P. There was a little girl waiting with her Dad in AM's chair and she was really really scared. Levi laughed and giggled thru his blood work. P got everything done right away and easy as usual.

 Then Levi headed over to the treasure box. He looked at the little girl and told her it would be ok and that there were cool things in the treasure box for after. She didn't seem reassured, but the dad seemed appreciative. Levi picked a green phone and had fun playing with it.

Then we were off to school!

Counts didn't come in until 12:53 today after being at the lab at 8:25! It is very frustrating when that happens. Counts were 192. Another drop. Seems like we are well on our way to another infusion. 192 is still a great number, but the drop isn't fun. Hopefully we can hold out a little longer since we are finally supposed to close next week.

August 30 - Blood Work

August 30 - Blood Work

We got to the hospital today and P was back! Levi was so happy to see her. He ran in and picked out his band-aid and then was off to his chair.

 The draw went so quick and easy that he barely had time to load a game on the tablet let alone play the whole thing. Then he was off to the treasure box. He picked a green pick up truck and was super excited to make it run on the floor, but it would't go in it's package and for some reason he didn't ask me to open it.

 Then on the way to the donut lady he saw that his fountain was all boarded up. He was very sad and worried about it. He kept saying that he hoped it felt better and that they fixed it. I am not sure what they are doing to it, but I hope its fixing it and not removing it!

 Then we were off to the donut lady for a yummy donut! He was super excited this morning and full of energy.

Labs came in about 35 minutes later today. His count was 235! An 86 point drop in a week. Not great! But its still a great number so we will run with it.

Next Plan: Blood work again next Tuesday (since Monday is Labor day!) Hope everyone has a great long weekend!

August 23 - Blood Work

August 23 - Blood Work

We got to the lab today and Levi was in rare form. We stopped at his fountain for a second to say hi and then we were off to the lab.

 As we were walking over Levi asked me if P would be here. I said I didn't know but I assumed she would. He turned the corner and saw AM and in the safest voice ever he said "No P. It's just AM!" I felt so bad! But AM took it in stride knowing that they have a great relationship. She said that P was on vacation. There was a bit of a wait so Levi had a seat and continued to be a goofball.

 When it was Levi's turn he went running in to get his band-aid.

 Then he climbed up in the chair to wait. He was not amused that it takes AM a few extra minutes to do the paperwork then it takes P who has it down to a science at this point, I think she could probably fill out Levi's paperwork in her sleep.

 He finally smiled when she came over to get started.

 The draw didn't go so well. AM missed his vein and ended up having to stick him twice because she didn't want to dig around in his arm. Levi was not impressed and you could tell that AM felt awful. But Levi never cried. He did saw "ouch" and "Ow" a few times but he did really well. We stuck to our decision from years ago that it's one thing from the treasure box per stick, so Levi got to pick two things today.

 On the way out of the hospital he determined that he and his new green owl needed to sit on the bench and wait for a minute. Not sure what they were waiting for, but they set right down.

Eventually I got them moving and we headed off to school.

Counts came in around 9. Levi's count was 321! A great number and another increase! Woo Hoo!! Two weeks post infusion and we are still increasing!! That's always a great sign.

Next Plan: Due to Kids Day and then Levi's first day of Pre-K we will not be doing blood work again until Next Thursday. With his counts so good skipping one draw won't be a big deal and he needs to not miss special things if we can help it.