January 29 - Blood Work

January 29 - Blood Work

This morning was the first morning that we used Levi's new morning game. He has to get his astronaut all the way around the moon and get onto the spaceship before the timer goes off so that he can blast off to Earth (so he says) where the donuts are! He successfully got onto the spaceship this morning and got his donut with 38 seconds left!! I was shocked it took him that long, but was glad the he made it, and was stress free for all of us, so that was nice. It was neat to see how excited he was every time he moved his astronaut! Brushing his teeth was never so exciting! And he did almost all the tasks on his own, so that was really nice!

 We got to the hospital and Levi was in a great mood. I had cleaned our bedroom this weekend and found some more old prescriptions that needed to go into the blue box, so Levi fed the blue box. He was super stoked about that. Then he went over to check on his fountain. He told me that it was the "fastest indoor waterfall EVER!"

 We headed over to the lab. P is on vacation in the nurse was a nurse we had never had before. She was very nice but I was a little concerned how Levi would do. He picked out his band-aid!

 And then climbed up in the chair. He was eyeing the nurse skeptically! He asked me what her name was and I said I didn't know that he would have to ask her. He gave me a look like I wasn't protecting him correctly!

 P had told me where the tablet was and the password to log into it, but I didn't feel like dealing with that this morning so I convinced Levi to play puzzles on my phone. He was happy enough with that in the end, and we found some food puzzles he hadn't done before, so that made him happy.

The nurse came over and said "Hi Levi, my name is A" so that made me really happy that she was talking to him. She did ask me his last name and birth date, which I gave, most people don't expect a 3 year old to be able to correctly give you that information. She was really good working with him! He wasn't overly happy and did say "ouch!" but she got it pretty quickly!

Then Levi was off to the treasure box. He picked the light up squishy fish that he has been eyeing for several weeks. It's kinda funny when he really wants something but wont take it, and then finally takes it after several weeks. Then we were off to school!

Very surprisingly blood work results came in crazy early! I got Levi to school at 8:30, and the fax came in at 9:15!! It was super nice! And even better Levi's counts are 192! We went back up! WOO HOO! Maybe we are going to level out near the 200 line! That will be great and what we need. We are now  four weeks out from previous infusion! YAY!

Next plan: Blood Work again on Thursday!

Freezin' for a Reason - Camp Sunshine Polar Dip

Freezin' for a Reason - Camp Sunshine Polar Dip

Levi decided a few weeks ago that he wanted to participate in this year’s Freezin’ for a Reason Polar Dip to Support Camp Sunshine. Camp Sunshine is a retreat for children with life-threatening illnesses and their families. We attend one week of camp each summer at no cost to us. This camp is our break, our time to not worry about USS for once, and be able to concentrate on our family, our time to just sit back and relax. Levi has set a goal of $1000 to raise by next weekend to help other kids like him attend camp. If any of you can spare a few dollars to support kids, Levi would greatly appreciate it!

Our team website is: http://csun.convio.net/site/TR/PolarBearPlunge/General?team_id=3796&pg=team&fr_id=1391

We have posted several times about trips to Camp Sunshine. The posts can be found at Trip 3, Trip 2, and Trip 1. 

Here are a few pictures of our fun trips!

January 25 - Blood Work

January 25 - Blood Work

What a Morning!! Levi is having a really rough time getting ready in the morning, he is the biggest delay fish ever and will end up just sitting down on the floor and rolling around, it's very frustrating, and this morning was one of the worst mornings out there, and in a moment of utter frustration I took away his promised donut at blood work. He cried, but got himself moving, and did turn around his attitude in the car and at blood work. I told him he was good at blood work and if he kept up the good behavior we would get a donut on Monday. I also am going to work on a morning chart because seriously something has got to change.

We got to the hospital and his fountain was still working so he was pretty excited about that!

 We got over to the lab and there was no line, he climbed up in the chair in the waiting room to sit and wait, since we have had so many waits lately. P said "you can come in silly!" and he went running in. He picked out a bug band-aid and was pretty excited that it was green!

The draw went ok. He wasn't overly happy about it and moved some, but P did a great job of getting it to work the first time! Levi was playing on the tablet, he had found a Mr. Potato Head game and was busy dressing and undressing Mr. Potato Head. Since there was no one waiting we let Levi finish his game once the draw was done, usually we make him stop as soon as the band-aid is on.

Then he was off to the treasure box. He quickly picked a light up Santa nose that he has been eyeing for a month of so. Then he gave big hugs to P. She is on vacation all of next week, so we wont see her until Monday February 5th! It will be the longest we have gone without seeing her since last winter when she was out on leave!

Then we were off to the car. He did stop in the entryway and asked if he could get a donut, but when I reminded him that he had lost it this morning, he didn't fuss, just said right, and walked to the car.

Counts didn't come in again!!! So Jay called medical records and they faxed them right over, but their faxes are horrible so it's a lot of trying to figure out what it says. The lady at medical records did tell Jay that we could now sign up for the patient portal which would give us the results online, but I fear that like DHMC's portal it will take several days to show up there. So it will help us keep all the results in one place, but wont help us on blood work days. I will go and sign up for it though, we have to do it in person and show ID.

Counts were 180. So a good number still and a slow down in the fall, so that is hopefully a good sign that we are leveling out!

Next Plan: Blood work again on Monday!

January 22 - Blood Work

January 22 - Blood Work

Happy Monday!! We got to the lab after a rough morning at home. Levi did not want to get up and out of bed or get moving at all. He did turn his attitude around in the car on the way to the hospital so that was nice. We got there and his fountain was working so that made him happy.

We went over to the lab and oh my goodness! I haven't seen it that busy in a long long time. I got Levi signed in and we were at least 6 people back! This was going to be a long morning. Levi settled in for his normal pictures and phone games.

Another kiss for Boaty!

We played every game on my phone while waiting. I thought we were about to lose it when it was finally Levi's turn. We headed into the lab and said hi to P. Levi got his band-aid and then climbed up in the chair. P had the tablet all set up for him, but he asked if he could keep doing puzzles on my phone (that was the last game he had been playing!) I said sure, so he settled in for puzzles during the draw.

The draw went fairly easily. P has started using a different vein in the same arm and Levi doesn't really like it. I think it feels different and he likes to tell P "Ouch!" Then we were off to the treasure box. Levi did not want to pick. He emptied almost the whole treasure box before settling on a magic washcloth that has Paw Patrol on it. P and Levi also took a picture together! It was really sweet!

Levi went over to give P hugs and she opened her drawer and asked if he wanted a donut. She has a HUGE snack drawer! Almost as many snacks as I keep in my desk at work. Levi picked cinnamon donuts. He said Thank you, gave big hugs, and headed out!

He was swinging his donuts and dropped them, he was sad and immediately went to get them!

Levi ate the whole bag of donuts on the way to school. No way is he going to be hungry this morning, we will see if he still eats lunch at school.

Counts didn't come and didn't come. Jay was in a customer meeting all morning so I bugged other people at his work to check the fax machine but the results didn't come. Finally around 2:00 Jay called medical records and had them fax over the results since they clearly had them by now. They sent them right over, but their fax quality is awful! Counts were 199. Not a bad number, definitely slowed down on the drop, hopefully we will level out. At this point we have officially made it past the three week mark for infusions, as the earliest we would go up for an infusion now would be Friday, and it will be three weeks tomorrow. Jay was headed out the door of work to meet Levi and I for gymnastics when his boss said "Hey wait! That important fax came in!" Yup thats right, the lab finally did send us the fax at 4:15pm!! From a stat 9:00 lab!! That is CRAZY! Thanks for taking 7+ hours to get us results, not like they are important or anything!!!

Next Plan: Blood work again on Thursday!

January 18 - Blood Work

January 18 - Blood Work

Happy Thursday! Levi was excited that his fountain was still working and stood and watched it for awhile.

We headed over to the lab and had to go to registration as we had to do endocrinology labs today as well as his regular standing hematology labs. Registration went fairly quick, but it always takes awhile to do that paperwork. P must have heard us in the registration room as she poked her head in to ask if we were doing the standing order as well. I said yes, and she started working on setting everything up on her end.

After we registered we headed over to the lab and there was no line no waiting, so Levi went running right in to get his band-aid.

Then he climbed up in the chair and had an easy blood work! YAY! He needed an easy one after last time, and especially important this time as he needed three vials instead of two. Then he was off to the treasure box. He picked out a car that was in a box and wanted it open immediately, so P helped him open it. He gave his hugs and then drove his car out! He got a few chuckles from the ladies at registration.

Counts took awhile to come in! I was almost at the point of saying that we needed to call them when the finally came in on the fax machine. They were 237. Another fairly large drop, but again expected with what his counts are at. Hopefully we will level out. It takes a few days for his endo labs to come back.

January 16 - Blood Work

January 16 - Blood Work

Happy Tuesday!! With the holiday yesterday we decided to wait and do blood work on Tuesday. When we got to the hospital Levi's fountain was working for the first time in several weeks. He was so excited that it was working. I think he would have stood there and watched his fountain all day if I had left him.

We got over to the lab and there was a short wait, so we settled in with pictures and phone games!

Then it was time to head in and pick out his band-aid.

Levi climbed up in the chair and settled in to play on the tablet.

P's supervisor was in the lab and P asked her to watch what happened and how great Levi was. The blood draw went ok, but his arm is getting some pretty serious scar tissue and it didn't want to give blood. Levi did amazing while she dug around in there to try to get the blood, but in the end she had to stick him twice in two different veins in order to get the blood out. Levi did amazing with it all!

Then he was off to the treasure box. He settled on a bubble toy!

Counts came in later in the morning at 296. So a pretty big drop, but those are expected when he goes up that high. Hopefully he will be able to level out this time and last for a little while.

Next steps: Blood work on Thursday to get back on schedule.

January 11 - Blood Work

January 11 - Blood Work

Happy Thursday!! It's a great day! There is a slight wait at the lab, but nothing we can't handle. We settled in for some cute pictures and games on my phone.

Usually I hold the phone and Levi poses, but today he asked if he could hold the phone and push the button. So I have about 45 variations of this cute picture below as Levi just liked to keep pushing the button.

Then we took a cute picture together!

Before long it was our turn to go in. Levi went right in to pick out his band-aid and got ready to climb into the chair.

The draw went well! And then we were off to the treasure box. Levi couldn't decide what he wanted, but did finally settle on a koosh light up dino toy.

As promised I had donut money today and Levi was excited to go get his donut. We talked to the Donut Lady for a few minutes about the fact that they have changed their sprinkle color from Christmas colors to spring colors!

Levi ate his donut on the way to preschool. He finished the whole thing before we were half way there, and its only 14 minutes from the lab to school!

Counts came in a little while later at 375. So we have started the decline as expected. Hopefully it will be a nice slow decline this time and we can level out around 150 and be awhile between infusions.

Next Plan: Blood work again on Monday. 

January 8 - Blood Work

January 8 - Blood Work

Happy Monday!! Levi was in a great mood this morning and was all smiles. We got to the lab and there was a short wait, nothing major, so we settled in. Levi always takes pictures on my camera before playing games, so he was having fun taking selfies.

A long time ago (at least a year, which is a long time in Levi time) Levi named the boy in the mirror Boaty. Now Boaty is everywhere, mirrors, camera's, windows, it's cute! Levi knows it's him, but will call it Boaty, cracks me up. So today he decided that Boaty needed a kiss while he was taking pictures. So this is Levi giving Boaty a kiss!

Adorable! Though made my phone sticky!

Then it was time to head in. Levi picked out his band-aid and then climbed up in the chair.

The draw went fast as usual and then Levi was off to the treasure box. Levi saw a train with track and grabbed it immediately. He was super excited about it.

On the way out Levi asked me if I had donut money. I told him that he didn't but that I would bring donut money on Thursday. P must have overheard us because she came running out of the lab with donuts from her lunch which she offered to Levi. Levi didn't understand I don't think because he said "No, Mommy doesn't have any donut money today!" P tried to explain to him that he could have them, but Levi just kept saying no with a sad look on his face. She is so good to him! She really does love him!

Counts came in a little later at 416! Wow a huge increase in only a few days. Its very interesting how his counts are going way up and then coming way down now that we have gone to wait and see. We graph all of Levi's blood work and watching the large roller coaster that we have now is strange. We used to do infusions every three weeks and stayed within a fairly narrow band, yes some increase and decrease, but nothing like we are having now. I plan to talk to Dr. C about this the next time we see her, or Dr. V about it whenever he comes back from medical leave.

Next Plan: Blood work again at the end of the week.

January 5 - Blood Work

January 5 - Blood Work

Hello Friday! Nice to see you!! Thursday was a snow day so I decided to wait until Friday to do blood work. Since he had just had an infusion on Tuesday I didn't feel the need to risk driving in a snow storm yesterday to get him down here especially since my tires are bald, and actually ended up keeping him home from school and having a full Levi and Mommy snow day!

We got the the lab and there was no line and no waiting. P was a little surprised to see us, but wasn't overly surprised that I hadn't driven in the storm yesterday, she said that she had only had 6 people in the lab all day!! That's crazy!

Levi went right in to pick out his band-aid. 

The draw itself went great as always. P really is good at what she does and then Levi was off to the treasure box. He was having a hard time deciding on what to pick, but ended up picking out some construction trucks. He asked for them to be opened in the car and had fun playing with them the whole way to preschool.

Counts came in a little while later at 300! Yup a great increase! Definitely didn't need to risk the drive yesterday.

Next steps: Blood work again next week and hoping to be able to go a month or so without another infusion.