October 28-30 - Camp Sunshine

October 28-30 - Camp Sunshine

We were lucky enough to go back to Camp Sunshine for their All Diagnosis Halloween Program! When we told Levi several weeks ago that we were going back he was sooooo excited. He asked me every day if it was time to go to camp. The morning we were going I dressed him in his sweatshirt for Nursery School and the look on his face that it was finally time was huge! He told everyone that he was going and was so excited.

Once again our family had a blast! Camp is an amazing and relaxing place. Getting to meet so many awesome people and to just get a family break is so nice! Levi loved it again. And has asked several times since if we could go back to Camp Sunshine!

Here's a few pictures of our weekend:

Let me in my room! It's cold out here! 

Playing on the playground!

Playing!

Waiting for Hands Up!

Daddy got to be in the show!!!! Levi kept saying "After Daddy's turn, it's My Turn!!" Glad he has learned taking turns, but had to hold him off the stage for the rest of the show (Levi had picked for us to sit in the front row!)

Marshmallows are Yummy!

Playing in the tot lot!

The first day wore him out! He slept great!

Time for lunch!

No time for nap, but a little quiet time was in order. 

Painting Pumpkins.

He got a new hat!!! Thank you to the lady who hand made them all. 

The Tot Lot Pots and Pans Parade!! It sure was loud! But super cute! First time ever that they came up to the adult session so we got to see the whole thing. Was fun! 

Camp Never forgets dessert! I think they would give dessert at breakfast if they could figure out how! 

Practicing blowing out his ceremony disk!

It's all lit! The only time Mommy cries at camp! The song just gets to me every time. 

Hands up!!!! Thanks Party City for the shirts and for sponsoring camp this week!

Eating Popcorn during the Talent Show!

He ran around like crazy during the masquerade ball and then crashed hard! 

A little last morning sadness on the way to breakfast!

Hanging with Mike and Sulley!

On our way to Trick or Treat!

Checking out all our loot!

Enjoying some Candy!

Checking on the baby bear. He said he was sad because he was sitting down. So he gave him a hug and asked him if he was ok. 

The ponds have fountains now!! 

Hi Moose! Can I have some of your smoothie?!

Loading up the car!

Do I have to leave Mom?!

Thanks again Camp Sunshine!! We will hopefully be back!

Crashed hard on the way home!

October 27 - Blood Work

October 27 - Blood Work

What a morning!!! Someday's I almost forget that Levi is 2. He is so well behaved and listens so well, and then there are mornings like this morning! He's 2 alright!!! At some point we lost our listening ears completely! And our ability to make a decision at all went right out the window too!

We got to the lab and P said we could go right in. Levi was super excited to go in because we had brought new band-aids for P, a box of shopkins band-aids and a box of Lion Guard band-aids. He gave them to P and then went right to the band-aid cabinet and stood there, and stood there, and stood there. Looking at all the pretty boxes. Finally he settled on Sesame Street, but then we had melt down after melt down after melt down about which one we wanted. You can't even really see them through the paper, but he didn't want any of the ones in the paper. Finally I just handed him one and said that's what you get.

The blood draw itself went great! A quick stick, no crying, all smiles. He was off and running to the treasure box. And then he stood there, and stood there, and dug around, and picked things up and put them down. It was so frustrating! P brought out all of her back up supply of stuff and he wouldn't pick any of that either. Finally he settled on a small little yellow tube and a red stretchy guy. I said fine, and off we went.

The labs didn't come in today again! Around 11 Jay called the hospital and requested them and they did send them over. His numbers were 157. So an 80 point drop in a week. Not awful, but not great either. Next Tuesday is an infusion, so dropping at this point is expected, but that is a rather large drop. We will be watching him over the weekend and making sure that everything looks good.

October 20 - Blood Work

October 20 - Blood Work

This morning was a fairly normal morning. We were a few minutes late getting out of the house and didn't get to the lab until 8:15 instead of our normal 8:00, but otherwise it went great.

We got to the lab and there was a short wait. The older lady ahead of us was very talkative with Levi in the waiting room. He was somewhat talkative back, but mostly just shy, and wanting to play. He was being a goofball in the waiting room! And wanted to take lots of pictures!

Finally it was Levi's turn to go in. He went running in to pick out his band-aid. He was a little confused that P called him in when the lady hadn't come out yet (she was in the restroom), but once I assured him that P had said he could go in he went running right in. He picked out his Sesame Street band-aid and climbed up in the chair.

The draw did not go well at all :( We started in his right arm, and although he set pretty still, he did wiggle at just the wrong point and P blew the vein. His right arm vein is getting very tired and bruised and has some scar tissue building up on it. So we switched to his left arm. Levi hates having his left arm done. I am not sure if he remembers the attempts from when he was younger (when he was little everyone thought the vein looked better so would try, but could never get it! to the point where we stopped allowing people to attempt in that arm) or if it actually does hurt worse, or what, but he hates it. I held him as still as we could and we got him distracted by looking at P's pictures. But it didn't go well. The needle went through the vein and she was able to pull it back and get the blood to come out, but it was slow going and not flowing well at all. And through all this Levi was SCREAMING, which doesn't help the situation. The blood basically stopped flowing so we stopped attempting the draw. P was sure that there was enough blood in the purple tube for the CBC but wasn't quite sure about the green tube for the LDH. I told her not to stress about that, the CBC was the important one, I need the platelet count, but if we don't get the LDH number it's not the end of the world. As P was putting the band-aid on Levi's left arm, the lady came out of the bathroom and apologized for taking so long and such, P snapped at her that she would have to wait. I think P was pretty stressed at this point! P loves Levi and hates it when he screams. I think it really gets to her emotionally!

Levi headed off to pick a prize out of the treasure box. He found green play-dough with play-dough tools attached to it and he was in love. He kept asking if he could play-dough in my car. I very quickly told him no. He gave P a big hug! And then was out of there.

When blood draws don't go well, Mommy caves and gets donuts!

The results came in all by themselves today! YAY! The system worked the way it's supposed to. The LDH count was included, so the green tube had enough blood in it, so that was good. His platelet count was 237! Not bad, a 27 point increase in a week, so mostly a plateau. At this point in the cycle that is what we are looking for! Levi will once again get Monday off and we will be back for lab work on Thursday!

October 13 - Blood Work

October 13 - Blood Work

Today started off like every other day, up and ready to leave the house to get to blood work, then Nursery School, followed by Mommy rushing to work to make her 9am meeting (whoever thought a 9am meeting on a Thursday was a good idea, is not my friend!)

We walked in and someone else was sitting at the desk. I started to tell Levi that P wasn't there when I finally got to the desk and P was there!!! She was sitting beside the desk training someone new! Levi was so excited that she was there!

The blood draw went well! Levi did a great job of picking his band-aid on the first try. We used his right arm and the draw itself went great! Before I knew it we were off and running to the treasure box. Levi picked out a jumping frog game! And was very proud of it. He wanted it opened right away, but its a lot of little pieces so I told him we had to wait. He understood, but was a little disappointed.

Once we got in the car I told him that he could have 2 frogs to play with on the way to nursery school and that seemed to make him very happy!

They were jumping all over the place!

When we didn't have any results by 10am, we were definitely getting a little frustrated. Finally around 11am Jay called the lab and talked to D again, she knows us, so she said she would fax them right over as soon as she got off the phone. They came in several minutes later, 2 copies! Interesting how that happens. When we call to ask them to send them, we get the fax twice usually about 2-3 minutes apart. Very strange! The whole fax concept is strange anyways, it should all be online these days and not waste the paper!

Anyways, the important part, his counts came in at 210! That's right a 110 point jump since the infusion!! YAY!! That is what we like to see and definitely makes things way less stressful! He will get Monday off from blood work now, and we wont be back until Next Thursday!

October 11 - Infusion #17

October 11 - Infusion #17

This morning started out like any other infusion morning. Levi was a little anxious and crazy man when we got to the hospital. He has started acting like this until his port is accessed. Once he is accessed then he settles right down and life is good.

We got checked in and got his vitals taken. Levi wanted to go to the playroom immediately (like usual) and we were off and running there as soon as I told him that he could. He found the trains and wanted Grammie to sit and play with him.

Then it was time to access his port so we went into the Jungle room. The access went ok, though not the greatest we have ever had. He didn't want to sit still with me after the port access was done and the Benadryl was started to he climbed up in Grammies lap and rocked while we watched Planes.

Dr. V pocked his head in to ask how we were doing, but said that he would be in and out today as he was dealing with an acute episode/crisis with another patient. About 30 seconds after we started talking he was off for the other patient. He had put in orders for Levi's treatment to proceed as usual however.

The nurse came in with Levi's plasma and got it started. Dr. V came back in and we talked about Levi's weekend, which thankfully had been uneventful and fun. Levi's counts had come back at 100, so no real change from Friday!! Yay! We had left Planes running while we were talking to Dr. V. At that point Levi had climbed into the big black chair all by himself. Dr. V had brought in some e-mails that he had received from some colleges in Switzerland that he was discussing our case with about the strange gene that I have and the fact that it has been seen in 3 other cases, Levi makes 4. Sadly most of those cases have passed away, but one little girl is still doing well in Europe. They asked what our family background was as they have never seen this specific mutation outside of a fairly small area in Europe. Our family history has no descendants from there though. As Dr. V and I were talking the room seemed to grow quieter. All the sudden Dr. V looked up and I turned around and this is what we found.

Levi was sound asleep!! We finished our conversation and Dr. V left. We got Levi a blanket and turned the lights out. The infusion had not yet been going for 15 minutes so I was afraid that the 15 minute vitals check would wake Levi up (as it usually does) and we would have a cranky boy on our hands for the next 3 hours. But Dr. V permitted the vitals check to be skipped, and Levi slept for the entire infusion!! Mom and I set and talked quietly and relaxed. It was the easiest infusion that we had had in a LONG time!

Levi woke up with about 20 minutes left and was hungry and thirsty. We got him a snack and a drink and kept him calm by putting Planes back on, which we never finished!

The infusion was done and we headed on our way! Hoping that this infusion would work like it's supposed to and we would not be back at the end of the week!

**Thanks again for coming with me Mom! It was definitely very nice to have you there and to get to spend the time together! And Levi Loves showing Grammie the trains and his place!**