July 30 - Blood Work

July 30 - Blood Work

Good Morning!! We have started staying in our temporary housing as off last night. It's now a 38 minute drive to the hospital! It's going to be a long month! We finally got to the hospital and Levi asked me if P would be at the lab. I didn't want to make any promises, but I said I thought she would be. He turned the corner, and sure enough there she was! He was so excited!

He went running right in to get his band-aid. 

 After he got it open he loaded up Plants vs. Zombies, and was laughing about the grass having to unroll and the flowers grow.

 The draw itself went great as always! P has him down to science, even knowing to touch the needle to him, which is when he swivels and moves, and then put it in otherwise she will miss it while he moves. It's amazing that the two of them have this down to a science.

After the draw we were off to the treasure box. All weekend he has been talking about needing to get another Owl for daddy, as we have Tickle (his owl), a Mommy owl, but no Daddy owl. He opened the treasure box and immediately saw a red owl and grabbed it and was off before I had barely even stood up from holding his arm. Then he was off to get a sticker too!

 He gave P big hugs! And was out the door. The whole process couldn't have taken more then 5 minutes!

So here he is, Daddy Owl! So now we have the whole Owl family!

I took Levi to school and headed to work. I was standing in morning meeting at 9:30 when my phone rang and it was Jay. UGH! Not what I wanted to see! He only calls when counts are low and we are scrambling to figure out what to do. I rushed out of the meeting and answered the call stressing about what the plan was going to be, only to have him say "I have great news!" not what I was expecting. Way to give me a heart attack dear. Levi's counts are at 167! An 18 point increase from Thursday!! That has never happened for us. Once he starts dropping we just keep on dropping! So for him to increase on his own is amazing!! It makes the beginning of this week so much easier and less stressful!

Next plan: Blood work again on Thursday where I have no idea what counts will be. The poor kid is bruised everywhere, but apparently his body is fighting against those bruises!

July 26 - Blood Work

July 26 - Blood Work

We got to the hospital and parked on L2 again which made Levi super happy! Then we headed into the lab, Levi was practically dragging me to go see P. We turned the corner, and uh oh, No P! Levi was disappointed, but we headed right in and he got his band-aid and climbed up in the chair to open it.

 I handed him my phone to play with as generally only P can get the tablet to unlock, but S was able to do it, so then he had both.

The draw itself went.... It wasn't the worst ever, but definitely not a P draw either. S said "There is quite a bit of scar tissue there" as she was digging around trying to get it into his vein. He said "ouch" and "your hurting me" several times, but he never cried, so that is good. And he did keep going back to his game. Eventually she got it to go and the tubes were filled, but it wasn't quick by any means, and not a first time hit either.

Then we were off to the treasure box. Levi opened it up and gave it a glance with his hands on his hips, like something should be in there that he really really wants.

 He found a blue owl, like his green owl, and said it was for me, as the Mommy owl! He also found a wooden truck that has to be built. Since the draw didn't go quite as well as normal I let him take both.

 I asked if he was giving high fives today and he hid behind my legs and shook his head. I don't think he wanted to go anywhere near S again. I felt bad and so did she!

Then because it was Thursday we were off to the donut lady! He was very excited to show and tell me that there were 2 sprinkle donuts today.

 When it was his turn he ran over to give her a hug before ordering his donut and paying for it, and then we were off to the car. He was being a little goofball this morning in the car!

I dropped him off at school and headed home as we have the home inspection on our new house today. Before Jay headed over to the new house he checked the fax machine again and results still weren't there, 2+ hours after the lab. I was getting worried, especially knowing that our counts are falling and we have a crazy week ahead. The inspection went great!! And we should be closing on our new house on 8/31. On the way out we finally got the fax! So 6+ hours after the draw on a stat lab! So frustrating. His counts are 149! So we are in the warning zone (under 150), but not yet in the danger zone of under 100! Phew, we can get thru the weekend and get done what we need to. Now we just have to keep our fingers crossed that Monday's draw comes back ok, so that we don't have to move closing on our current house out as it is scheduled for Tuesday 7/31.

July 23 - Blood Work

July 23 - Blood Work

Happy Monday Everyone!!! We were running very late this morning as I totally forgot I had that 9am bi-weekly meeting at work. I bribed Levi with Donuts in his breakfast cup and it totally worked. We had a great morning getting ready and a happy Levi and Mommy!!

We were pulling into the hospital and he said "Park at L2 Mommy! Park at L2!" So I did! and he once again wanted his picture taken!!

 We headed into the hospital and got to the lab. There was no line or waiting today so Levi went running right in! He took a few minutes to decide on a band-aid, but ended up picking the baby from The Incredibles. The baby was on fire, and Levi thought that was hilarious!

 Then he got up in the chair and started playing plants vs. Zombies again. He barely even noticed when P did her work. The blood draw was started and finished without him even moving!

Then he was off to the treasure box. He picked a green truck once P showed him that it was a pull back truck. He was pretty happy. After he got his sticker and gave hugs he asked me if it was donut day while we were still in the lab. I said, "Not today. Thursday is donut day". Levi said ok, and was off, P however looked sad and called Levi back and offered him donuts of hers! He was super excited and took powdered sugar donuts.

Then we were off to school!

Counts came in fairly early this morning! It's always nice when they come in when they are supposed to! Levi's count was 162. So a 16 point drop since Friday. We are falling, just slowly. We will see how Thursday goes. We have a busy week coming up. On Thursday we have an inspection on the house we are under contract on and next Tuesday we are supposed to close on our house. So we will see how all that fits in with Levi. Of course his health comes first, but I have to fit all these other things in too. Busy Busy Busy!!

July 20 - Blood Work

July 20 - Blood Work

Happy Friday!! For months Levi has been begging me to park on L 2 instead of where we normally park, I always forget, but for some reason I remembered today so we went over and parked there, and had to take Levi's picture with the sign in order to remember the day!

 We got to the lab and there was no line or waiting so Levi went right in and got his band-aid.

 He climbed up and opened it, and then started playing on the tablet.

 P did her amazing work and the draw was done way sooner then Levi would have liked, he wanted to stay and play on the tablet more. But he took off for the treasure box. He had the fastest treasure box pick ever! He picked a play green cell phone and was super excited about it.

Then because it was the end of the week we were off to see the donut lady!! There was a short line there but he did well with it!!

 Then he chowed down on his donut!! He ate the whole thing in the car on the way to school! Guess he really was hungry today.

Counts came in around 90 minutes after draw. Not bad, but definitely inching towards the not happy amount of time. His count was 178. Not a bad count, but definitely still falling and getting lower. I figure at this rate we will be in Lebanon at the end of next week. Generally once we fall much below 200, we don't recover, we just continue to fall at a quicker and quicker rate. Hopefully things will align well with our house closing and Levi's infusion, but obviously he comes first, so we will make it all work somehow!

Next Plan: Back to our regular scheduled program. We will do blood work on Monday and see how much we have fallen over the weekend! Hope everyone has a great weekend!!

July 18 - Playhouse Move

July 18 - Playhouse Move

With Levi's condition it isn't always safe for him to be around a lot of other people. When his counts are falling or after an infusion we often keep him home and away from lots of other people and germs. Because of this for his second birthday we built him a giant playhouse in our backyard, so that even when he couldn't go to the park or out to places he would have his own special place to play. By giant, I truly mean it! It could be a small shed! It's 8 feet by 10 feet and 15 feet tall. It has two stories and a real roof.

We are in the process of selling our house and moving and of course need to take the playhouse with us. This was a huge stress point for us. How do we move it? How do we get it out? Will we have to disassemble it? How will we afford to move it? Just a lot of stress.

However we had an angel help us out for sure. Several weeks ago we reached out to Hadley at Moore's Crane, and he agreed to move the playhouse for us!! And he was able to fit us into his schedule at such short notice!!!

Today was the move and we allowed Levi to stay home from school to watch it! It was an amazing sight to see for sure!! Below are just a handful of the pictures we took.

Once again to Hadley and the crew of Larry and Tim!! Thank you!! From the bottom of our hearts thank you so much! You did an amazing thing for a little boy today, and although he doesn't understand the magnitude of what you did, he does love that his playhouse is moving with us! And for two stressed out parents you took a huge weight of our shoulders, so thank you thank you thank you!!!

To everyone who stopped along the road to watch today, it truly was an awesome thing to see! And you made Levi feel like the center of attention which just made him smile bigger!!

And to ANYONE out there that might need crane rental or help with something, Please consider using Moore's Crane Rental! They are amazing people!!!

July 17 - Blood Work

July 17 - Blood Work

Happy Tuesday!! Levi was in no mood to go to school or blood work this morning! But a donut in his breakfast cup made things a little better. At least his headphones are smiling!

We got to the lab and there was no waiting, but Levi took a silly selfie anyways! There are 2 lab techs now in the lab, and that throws me off sometimes on if there is a wait or not, so I usually make Levi sit until he gets called in.

He headed in once P told him he could and went right to his band-aid. He picked Paw Patrol, but was a little sad that all of the Rocky band-aids were gone.

The draw went amazing. P is so great at what she does, and then he was off to the treasure box. It only took him a minute to decide once he saw the green owl. Everyone meet our newest family member, Tickle!

Levi is in love with him!

Then we were off to school! Tickle went to school with Levi for the day, to check it out and get nap time cuddles. Counts didn't take very long to come in today, only about an hour, and they are 196. So a definite drop, but not awful. We will see if we level out here or if we continue to fall.

Next Plan: Blood work again on Friday. We will get back to our regular schedule next week, but this week is crazy, so Friday just works better.

Update: I picked Levi up from school and he grabbed Tickle and told me we had to fix him. Sure enough his back seem had come completely open and his fluff was coming out. Levi kept saying "we have to put his fluff back in!" and "his fluff is getting out". I said I could fix him no problem. We got home and I went to fix him, and uh-oh, all of my sewing stuff is packed in storage. Should have though to pull some of that out. We called Nonna, and she came to our rescue with a needle and some green thread, and Tickle has now had surgery and is back in one piece!! Levi was so cute, he gave him a hug and a cuddle before we put Tickle "to sleep" for surgery. Then he woke him up after and told him to relax and rest. It was the most adorable thing ever!!

July 13 - Blood Work

July 13 - Blood Work

Camp has only been over for hours, but we are already back to our medical reality. We don't even go home before going to the lab, just straight down the highway.

We arrived at the lab at 1:00 and saw P in the parking garage, she was on her way to lunch. Levi ran and gave her a big hug. She looked at me, and I think for a second almost thought about skipping lunch, but she said it's J inside, and I said oh, she's good. Levi said, I miss you, to P but that he would be good for J.

We went inside and Levi checked out his fountain!

Then we headed over to the lab. There was no line, just a little waiting while J did the paperwork. I made sure that she put in both fax numbers since it was so late on a Friday, I wanted to make sure that we got his numbers. Also Levi has some strange bruising and has been extra tired, so both Jay and I were a little worried about what his counts would be.

The draw went awful, well awful for Levi standards. Levi doesn't do as good for people that aren't P and J couldn't get the tablet unlocked, so he didn't have a distraction. He was not happy with the vein that J picked and he wiggled, this caused her to go thru the vein instead of into it. She then spent quite a bit of time wiggling the needle around in his arm. Levi did well with this, he never cried or yelled, but if looks could kill, well lets just say the hospital would be looking to hire a new lab tech! Eventually she did get it into the vein, and was able to get the two vials of blood she needed.

Then Levi was off to the treasure box. J kept complementing Levi on how well he had done. Levi found water balloons in the treasure box and he picked those. The kid is obsessed with water balloons!!

Then we headed home. We have a busy weekend ahead, as it's moving weekend. We are really hoping to not add an infusion to the craziness of the weekend, but of course we will if needed. We are trying to make plans for the weekend, so after a bit I sent Jay down to work to check the fax machine, there was nothing there. Not good. At just before 5:00 I made Jay check again and there was still nothing there, not a good sign, so I made him start calling. He tried medical records first and they didn't have the results, so then he called the lab directly. He explained the situation to the lab tech, and for once they actually listened to us. She said the computer states it has been automatically faxed from the system, but I will print it out and manually fax it now. If you don't have it within 10 minutes call me back. Jay waited a few minutes and then went back to work and thankfully the fax was there. His count was 214!! An increase since last Thursday!! Phew!!! A huge weight off my shoulders there. Just goes to show there really are no indicators to see what his counts are. By look and attitude, both Jay and I were 95% convinced that we would be heading to Lebanon tonight. Thankfully we don't have too, and instead can move ahead with our weekend plans, which include Levi's first sleepover without Mommy!!! I know he will have a great time and it is harder on me then him, but I am a little worried about it.

Next Plan: Blood work again on Tuesday. Since his counts are still good, we are letting him have 2 nights of sleepover so we can have all day Sunday to move and will pick him up Monday night around dinner time, so won't do blood work until Tuesday.

July 8-13 - Camp Sunshine

July 8-13 - Camp Sunshine

Camp was amazing as always! Here is just a small snapshot of our week!!

Touching the ceiling on the top bunk! He has been asking if he is big enough to sleep on the top bunk this year for weeks, and we said he was! He was so excited to get up there and touch the ceiling as soon as we got into our room. 

He found his rocket cup while we were packing and insisted that it had to come to camp with us! He is having a little drink while we set up the room. 

Five point harness swings are fun. You can really get going on them!

Opening snacks!!! 

Off to the tot lot to play while its relatively quiet!! He loves the ride ons in there, and was super excited to find Skye's helicopter. I think he is a little big for it, but he insisted that he isn't!

Having dinner on "our bench"! Levi's favorite place to eat. The cafe is very very very loud, and it's generally to much for Levi so we end up eating a lot of meals outside, and he has nicknamed this bench "our bench!" Thankfully it has always been free at meal time. I don't know what he would do some day if someone else was sitting on it. 

Opening ceremonies! Doing Hands Up!! A huge camp tradition!!

First night bomb fire and marshmallow roast. One of Levi's favorite things!

Family tradition of washing off the marshmallow in the lake, clothes and all! Levi gets soaked and has a blast, and the marshmallow does generally all come off. 

Playing music at the new instruments!

Playing 4 in a row on the yard size board. Levi had a blast!! And got lots of "yellow shirt" attention!

Day 2 Morning! Breakfast we can generally eat inside because people come at all different times, so the care is more empty and quiet. 

Running around the stage after breakfast. A big thing that all the little kids do! Was cool to see Levi join in this year. He wouldn't have anything to do with it last year. 

Giving Sully his morning duff with Bear. 

Little door time!!

Bear and Levi coming in the little door!

Pool time!!! It's really nice that Levi doesn't need a nap anymore and we can do fun things during family rest time instead of actually resting!

Dinner time on our bench again. 

All dressed up and excited for the masquerade ball. So fun and exciting to see him happy!! 

He said "I'm going to go ask them to play the Paw Patrol song!" and sure enough he went right over to the DJ and asked!! And one song later the DJ played it!!! Made his day!!

Running around and dancing with the other kids his age!! 

Three characters all together. I seem to have lost Levi though. But Hi Sully, Mike, and Rocky!

He lasted about 40 minutes at the masquerade ball before being done! That is amazing compared to the maybe 3 minutes we forced him to go last year. He wanted to go into the game room, and there was an older kid who asked him to play air hockey. He didn't really know what he was doing, but the kid was so patient with him, and made him feel like he was doing great. It's so awesome to see all the kids helping each other out at camp!

Playing with the life size chess board. He was helping a dad put all the pieces back on that the dad's child had taken off. The dad kept saying thank you to Levi as his own son had run off on him. 

Good Morning!! Life is good!

More small door play!! Levi loves the little Levi size door! 

Snow cone day is Levi's favorite dessert!! This was the dessert after the yummy Texas Roadhouse BBQ lunch. Levi could have kinda cared less about the BBQ but was stoked about the snow cone. In fact he had two!

Eating his second snow cone. 

While Levi was in the tot lot and Jay was on the challenge course I decided to go to the adult arts and crafts room and paint some on the shower curtain. Every family room has a painted shower curtain from some week of camp, and this was the first year we have gotten to participate in painting one! Was cool! Someday, someone will shower behind these words! 

Dinner time! We convinced Levi to go to the picnic tables today! So much more comfortable then the bench, but still quiet enough for Levi to actually eat. 

Playing with the chess pieces after he was done eating. Somewhat hard to see in this picture, but he put all the black pieces on black squares and all the white pieces on white squares! 

Giving the moose some love! 

Getting ready to do his act in the talent show. He was super excited, then really nervous and said he wouldn't do it, and then super excited again. He went out their and did amazing!! He dressed in his Rocky costume (his request) and did flips and tumbles to skidda marink a dink, his favorite song. Everyone cheered for him and his smile just got bigger and bigger!! He was super proud of himself!

We travel with no shortage of stuffies! I think he somehow managed to sneak 8 stuffies in the bag for camp!

Playing with some friends from next door out on the porch. This playdate could have gone better, but it could have gone worse too. Overall he played with them some, and shared his toys some. 

And he did his own thing some too. 

Kids only dinner night. Sorta a tradition to eat it on our porch! 

Float dessert!! This is where the love of/addiction to orange soda came from!!! 

Hanging with the bears!! 

Dinner on the last night!

Wish boat ceremony! 

Playing remote control for the last time on the way back to the room. Levi is the remote control and he "hits" pause and play to get people to start and stop. It's super cute and he gets really into it. 

Yearly sign picture!! I thought it would be cool to see Levi grow over time. I swear he didn't shrink this year, camp raised the sign up about 6 feet. It used to sit on the ground, not up on posts! 

Making his bear on the way home from camp! I am so grateful that pay your age day was yesterday and not today!! 

Meet Bamboo!! 

As always thank you for a great year at camp everyone! This is the best week of our year as a family. No stress, no fighting, just relaxing and being silly!! We are geared up to have another year of medical crazy, but we can handle it. Our tanks are full again and we can get thru anything!!