July 27 - Blood Work

July 27 - Blood Work

We got over to blood work a little later then usual (none of us could get going this morning) and for the first time in awhile there was a little wait. We settled in to the chairs to wait.

 Waiting was not going well. Levi was antsy and angry and mad! Thankfully the lady who was in getting her blood drawn from P was a regular  who knew Levi so P allowed Levi to come in to get his band-aid while she was finishing up with the other lady (per the other ladies permission of course!) There are now at least 5 people who do blood work on Thursdays and ask if Levi has gotten there yet/hope for a glimpse of him! He's like the local celebrity!

Levi picked out his band-aid and then told me he was sitting by himself again. He did great again! When did my baby get so big!!! Then he headed off to the treasure box. He picked a spinning light thing and had fun playing with it in the car.

 Levi requested to go to Dunkin Donuts and I said sure so off we went. We went inside and ordered. The staff was busy and there were a lot of them and people and such so I ordered and then expected them to get my order right. This is where I should always double check! We got out to the car and I handed Levi his coolata (did you know you can order extra small?! One of DD's best kept secrets, they are cheap and the perfect size!) and then opened the bag to hand him his donut and the donut did not have sprinkles on it! They had given him the wrong one! I thought the world might split in two with the scream that came out of him. As I was getting him unbuckled to go back in and exchange his donut he took a big bite out of this one and said "I'll eat this one Mommy!"I gave him a big high five and said I was proud of him. He ate 90% of that donut!

Counts came in later in the morning then usual and were 229! A great number still, but a pretty hefty drop since last week! Good thing we are headed into an infusion because "once we drop we just don't stop!"

Next plan: Infusion on Tuesday August 1st and we are bringing Grammie!! :)

July 21 - Blood Work

July 21 - Blood Work

We left camp around 11 and after a few stops in Portland made it to blood work around 2. P was very surprised to see us as I told her that we might not make it this week. There was no line or waiting so Levi went right in to pick out his band-aid. Daddy was with us which is a rare treat so he was showing Daddy where everything is.

Once he had his band-aid he climbed up in the chair. I went to pick him up to slide in underneath of him and he said "I sit by myself Mommy!"

 And he did! P lowered the arm rest all the way down for him and I held his arm in front of him, but other then that he did it all!

 He told P he didn't like the pokey thing (aka Needle) but he set super still for it and even watches.

They had a whole conversation about the tube colors and such just like usual.

I can't believe he is getting so big. The first time P took his blood he was just weeks old and I cuddled him while she did a heel stick. Now he sits all on his own like a big boy! It's crazy!!!

Once the draw was done he headed over to the treasure box with daddy and picked out a green matchbox car!

Since it was later in the day we weren't expecting to get the phone call with the results, but we did expect to get the fax. Jay and I stopped in to grab the fax around 10:30pm and the fax wasn't there. I was a little upset but went with the no phone call from Dr. V is good news so his counts must be fine.
Monday morning Jay had the counts (the fax had come in late Sunday night). Counts were at 277! An amazing number!!!

Next plan: Blood work Next Thursday.

July 16-21 - Camp Sunshine

July 16-21 - Camp Sunshine

We were lucky enough to be chosen to attend Camp Sunshine again this year for their Hematology/Oncology week. Levi loves Camp Sunshine and it is such a relaxing place for all of us. We really get in some true family time and get to take a break from the mundane parts of life to kick back and relax.

Here are just a few highlights of our amazing week!

Hands Up!

Levi is potty trained now so he gets to go in the pool!!! 

One day camp gives you soda!!! Levi was excited!

Therapy dogs were at camp this week! 

The little door is always a highlight. 

Giving his bear a hug! He said he had missed his little bear!

Every time we walked down the path he was excited to see the Camp Sunshine rock! So he would sit on it! 

Hands up! 

Leaving is always tough but we will be back!! 

July 14 - Blood Work

July 14 - Blood Work

This morning was a little hectic as the Nanny called in sick, but Levi and I got up and got moving and the day started out better then it could have!

We got over to the lab and there was no line so that was nice. Levi went right in and picked out his band-aid. He climbed up on my lap in the chair and set down and held out his arm and the draw was done before we knew it. He was off to the treasure box. The treasure box was getting kind of low so Levi saw the sticky stretchy little guys from Oriental Trading and grabbed a handful of them. We put him in his overalls pocket and headed out.

We got to my car and I told him he could have 1 in the car so he picked one and we opened it up.

 Then we headed to Mommy's office in order to get my computer! Levi was very good. He climbed in my chair and colored a pretty picture on my white board while waiting for me. Then we went over to the candy cauldron and he picked out a hershey kiss! Thanks to my co-worker for the candy supply was a great bribe to be quiet in my open concept office with huge ceiling that sound travels in like crazy!

Then we headed to McDonald's before heading home!

Counts came in a little bit later at 224! A great 50 point jump since Tuesday's infusion!

Next plan: Blood Work next Friday if we make it home in time from Camp!

July 11 - Infusion #30

July 11 - Infusion #30

We got over to the hospital at 9:25! Talk about close to our appointment time. Thankfully they are pretty flexible with us. Levi begs to park on purple so up, up, up we go in the parking garage. Then down in the elevator. Then we got checked in and headed out back. We put our stuff down in the Jungle room and then headed to do work! Levi was fairly cooperative with blood pressure today! Weight however... not so much!! They really need to invest in a digital scale. The fact that he can bounce on their old fashioned scale is funny in his little mind. Of course making it really hard to get an accurate weight.

 After we had finished vitals we headed back to the Jungle room as we had a surprise for Levi. I pulled out the Camp Sunshine Late changes form and showed it to Levi. He immediately recognized the camp logo and started jumping up and down. I told him that if he could get Dr. V to fill it out and sign it then we could go to Camp Sunshine on Sunday! We then counted out how many days that was on his fingers. He was jumping up and down. Once we told him he could go he took the form and sprinted down the hallway to the office/nurses station where thankfully Dr. V was standing. He starts jumping up and down in front of Dr. V saying "Dr. V Dr. V sign it please sign it!" It was the most adorable thing EVER! Dr. V had a huge smile on his face and looked at the form and then asked Levi when we were going to camp. Levi held up his little hand and said "In 5 days!" looking at all his fingers with this huge grin. Then got kinda quiet and said "If you sign the form. So Please sign it Dr. V" Dr. V got down to him and said that of course he would sign it but showed him on the form where he needed his labs from today so he would have to wait until after blood work, but that he would do it. Levi seemed satisfied with that answer and took off for the playroom!

We played in the playroom for quite awhile.

 Then Dr. V came in to the playroom with a 4th year resident. He introduced her and then she stayed and talked to us for quite awhile about how Levi has been doing. Then Dr. V came in and did his normal look at Levi and said that everything looked good to continue as normal today.

 It wasn't long after that that Nurse D was ready for us to head back to the jungle to get accessed and do Bennadryl, so back we headed.

 Nurse D did the Bennadryl manually through his tube instead of using the pump and Levi got very sleepy! i thought we might get a nap, but no such luck. He even asked for a blankie and the light to be turned off. We started his movie and he chilled on my lap for quite awhile. It was nice. I haven't gotten infusion cuddles in awhile, he's wanted the chair all to himself, so we just cuddled while we watched Cars 2.

 30 minutes after the Bennadryl they came back in with Levi's plasma. The bag was very orange today. It's always interesting how different people's plasma looks different.

Around 11:30 Jay headed down to the cafe to get lunch. Levi needed to go potty about a minute after he left so into the bathroom him and I went. One of the first times I have attempted a solo bathroom trip while he is connected and it went beautiful! Once we got back he wanted to switch the movie to crazy people and wanted the chair to himself!

 Jay came back with lunch. Levi was watching his movie and very loopy so this is what he did to his hot dog! He must have set in this exact same position for 15 minutes!

 Levi was getting antsy because he was over tired and we still had a ways to go on his infusion so we switched his movie to Mickey Mouse clubhouse and he set on my lap and watched the whole thing! He didn't sleep, but he mellowed out.

As soon as he was de-accessed he wanted to go to the playroom. He put his shoes on and headed over to play.

 He played puzzles, blocks, and trucks!

Counts had come back at some point at 174, a great number on the day of an infusion. It is the first time we have been under 200 since May 9th, and that was 194, and before that not since March 30th at 140, so his counts have been great for three and a half months now!! It's so nice to see! And so much less stressful. 

We headed out after playtime. Levi put his key in the box!

 And then Levi, Ice Cream, and I walked out hand in hand!! See you again in 3 weeks!!