November 17 - Blood Work

November 17 - Blood Work

This morning was crazy and hectic!! I am in training for work all week, so have to be up and out of the house early to arrive on time, so adding in blood work on top of that made it so we had to be out of the house super early! Plus Levi had stayed home sick from Nursery School on Wednesday, so when I woke him up on Thursday I didn't even know for sure if he would be going to Nursery School. Thankfully he woke up much healthier then he went to sleep, so that was good.

We were off and running to the lab by 7:10. So early!! Usually Levi isn't even up by 7:10, let alone, up, dressed, and in the car. We got to the lab and there was one gentleman in ahead of us. Levi climbed up in the chair and waited.

Climbing into the chair is hard work

Can I push the button mommy?!

Look how big my mouth is!!

When P said he could go in he took off running for the band-aids, almost taking out the man who was trying to come out. Thankfully the man was about my age, and thought it was funny! Levi picked out a shopkins band-aid and was very happy about it when he got it open and saw that it had the popcorn shopkin on it! (that is his favorite).

The draw went amazing! Nice and quick and easy. P used his right arm but a different vein then usual, the one more on the inside of his arm instead of the outside. She said that as he is getting older that one is becoming more prominent. Levi didn't argue at all, just let her do it! :)

When it was done he was off and running to the treasure box. He picked a green fish and was very happy about it. He went running off to the fountain after giving his hugs to P. He really really wanted to put his fish in the fountain, he kept telling me that she needed to swim, but thankfully we escaped with a still dry fish.

We were off to the car so I could rush him to Nursery School and then rush back across town to make it to training in time, which I did with about 2 minutes to spare!

The fax came in about 30 minutes after the draw! YAY. Maybe we finally have the system worked out and the fax's are going to come in when they are supposed to. I was a little worried about what Levi's count would be with the cold he has, but the worry was all for not. His count came back at 176! Not a bad number at all since we have an infusion on Tuesday.

November 12 - David's House Bright Space Grand Opening

November 12 - David's House Bright Space Grand Opening

We were invited to the David's House Bright Space Grand Opening the last time we were up at David's House and I was asked to give a speech. Even though it is a long drive we decided it was well worth it to give back to the organization that gives so much to us. They truly are our home away from home.

We got there a little early, and had plenty of time to mingle and talk to everyone. We were even more honored to be invited once we got there as we found out that we were the only family there to represent all of the families that go through the house.

The Grand Opening started with a few speeches by members of the different organizations. I was the last to speak. Here is my speech:

"Good Afternoon! What an amazing day today is to see everyone gathered here at the place we call our home away from home.

On New Years Eve, Levi was diagnosed with Upshaw-Schulman Syndrome an ultra rare genetic blood disorder which requires regular plasma infusions. We live 2 hours from here and the thought of driving here every 3 weeks with a 20 month old at the time was daunting and overwhelming, knowing that he would need to sit for a 2 hour drive, then a 5 hour appointment, and then another 2 hour drive was a scary thought. We started looking into hotels and other options of being able to spread that time out. But even that wouldn't be fun. A 20 month old in a hotel is as much a nightmare as the drive, needing to keep quiet, having no toys to play with, and having to sit at restaurants for dinner is both a lot of work and expensive. We started seeing our savings dwindle and our minds get stressed.

At the end of February we learned about David's House and stayed here for the first time. Our family fell in Love. It was the perfect place for Levi. He had places to run in the playroom or on the playground, we could eat here and nobody questioned if he was walking around while eating or being a little louder then normal, there are toys and books for him, and there are other families and children to talk to and play with. 3 weeks later we came again, and we've been here at least every 3 weeks since. Levi gets excited when we tell him that we are going to David's house that night!! He has his favorite toys, favorite cot, favorite rooms, and favorite place to sit and eat.

Our last visit was on the 31st of October. We arrived like any other evening, got settled in, and ate dinner. Then we headed downstairs to the playroom to spend the next 2 hours until bed time, and what did we see, but this amazing bright space! Levi ran around looking at all the new toys. We set in the fancy chair and read every one of the new books, we built with the magnet blocks, played with the dolls, cooked dinner, drove the dump trucks on the yoga mat road, built with the large blocks, played foozeball, set in all the chairs, drew at the table, and before we knew it it was past time for Levi to go to bed. The next morning we were back in the playroom for a while before heading over to the hospital, playing with the doll house and other new toys. I am sure we didn't even scratch the surface of the cool things that we can do here! Watching his face light up with all the new things he could do was like watching his face on Christmas Morning. He was so excited.

Our family is so appreciative that David's House is here for us and so thankful that bright horizons gifted a bright space to David's House. Now at 29 months Levi is starting to show sings of anxiety on the mornings of his appointment but having this place to play in to get his mind off of it really helps our morning go so smooth. He is always sad to leave David's House but the last time we were here he asked if we could bring this play room over to the hospital with us, even though he loves playing in the hem/onc playroom too. It just shows how awesome this space is for kids! So thank you! This is our home away from home and this bright space makes it even more special for Levi! We will be back and we will play again!!"

Levi was then asked to cut the ribbon and be the first child to go play officially!

Cutting the ribbon!

Levi loved getting to play at David's House! He didn't quite understand why we weren't staying, he kept asking Kim if he could have his necklace! It was super cute. :)

The event was great. Everyone was so nice and seemed so excited that we were there. We are so glad that we went! Once again thank you to Bright Horizons for the Bright Space donation and to David's House for choosing us to represent the families, we are so touched and honored!

November 10 - Blood Work

November 10 - Blood Work

This morning was pretty stressful for all of us. All week Levi had been waking up and saying "No P's this morning, Mommy, No P's" where as usually he is all about "Go see P, Mommy, Go see P". So I was very worried about how the morning would go. But this morning he woke up and when I said "we are gonna go to P's before Nursery School" he said "ok" with a smile on his face. First win of the day!!!

We got to the the hospital and walked in. The first thing we saw was that the fountain was turned off. Levi was very upset about this. He loves that fountain. He was very worried that it was broken! Uh oh, not starting out as good as would have been nice.

We got into the lab and there was a wait. P seemed a little frazzled with how many people were in the lab. Thursday mornings are usually pretty quiet, so I was a little surprised with how busy it was as well. Levi did a great job waiting though. He "drove" the chair, took pictures, and did a decent job of sitting in his chair and waiting.

He wanted to see how big his mouth was!! 

Driving the chair

Finally it was our turn. Levi went running right into the lab to pick out his band-aid. He picked out the plain blue band-aids with the pink and green fish on them. He generally gets upset when he opens those and realizes that the band-aids don't have the bear in the boat on them and just have the fish, but today he was excited! Win #2. 

The draw itself went great. Could not have gone quicker if we had tried, was so smooth, he barely wiggled, and no crying!! I don't know what is up with his left arm vs. his right arm, but I swear I am never letting anyone touch that left arm again. Right arm all the way!!! Win #3. 

He ran over to the treasure box and was super excited about everything but then didn't want it. He ended up settling on a pencil, and then P insisted that he take paper to color with, she even tried to get him to take a whole coloring book. He did settle on taking one of the small flip flop note books. 

Results came back at almost the 30 minute mark exactly!! Win #4. 

And his counts were 190. Win #5!!

Was a great morning!! Next plan is for blood work again on the 17th. 

November 3 - Blood Work

November 3 - Blood Work

Today started out like every other blood work day. Levi was super happy in the morning that we were going to go to "P's Work!" We drove down to the hospital and he was very happy about getting into the garage tunnel and walking into the hospital.

We got over to the lab and it looked like P wasn't there again, but once we got closer she was. She has been training people on the computer/paper work side of things so it always seems like she isn't there. Levi was super excited to see her and couldn't wait to get out of my arms to go into the lab. He went bounding in. He picked out a band-aid right away, and climbed up into the chair.

P came over to do the draw and Levi was still pretty happy. We told him that we had to use his left arm because his right arm is getting tired and the vein just isn't as good. He wasn't overly happy about this but he let us do it. P did the coldy cold and the softy soft and everything was going well. This is when things took a turn for the worse. She didn't even have the needle close to him yet and he lost it! He was kicking and screaming and yelling. I tried to distract him with the pictures, which usually works and he settles right down, but nothing was working. He was moving all over the place. At this point the needle was in, but P was struggling to find the vein, which was no surprise. He was kicking hard and he kept pushing her further away. P was clearly losing her cool, which I don't blame her, I was too. I just kept trying to reassure him that all was good and life is ok, but it didn't matter. He was just screaming, crying, kicking, turning bright red, and had huge tears coming down his face. He was about to fall off my lap, but there was nothing I could do. Finally the needle was in the vein and the blood was coming. Usually this will settle him down and he will watch the tubes fill, but not today. He just kept crying. I looked down at him at one point as he was literally trying to roll over in my lap and said "Levi, sweetie, you gotta stay still" and he looked up at me with this big puppy dog eyes and tears down his face and said "Mommy I want a cuddle"! Just about broke my heart, he was trying to roll over so I would hold him better. Finally the tubes were full enough, and P pulled the needle out. We all were right on edge. Levi settled down ok and took off for the treasure box. P was pretty shaken. The poor girl who was training was shaken and she had been in the office. P looked at her and said "It's usually not like this!" I hope she doesn't consider a career change after that 1 draw as Levi is usually so good.

Levi dug around in the box some but it didn't take him long to land on a sun catcher with a fish and bubbles. He gave big hugs to P like nothing strange had happened, and was off to the fountain.

I took him potty and then let him get a donut. After a draw like that, Mommy's heart is broken into a million pieces, and I know that a donut will at least put a smile on his face. I just want to hold and cuddle him for hours, but I have to work and he has to go to nursery school.

Around 9:30 the lab faxed Jay the authorization form again... umm.. seriously?!? We have signed that thing at least 3 times now. Jay called the lab and explained to them what was going on, and why we received the labs plus the doctor, and that yes we have permission from not only our doctor but the director of security with the hospital, so she agreed and sent over the labs a little after that.

Levi's count was 168! Not bad at all! An increase with the infusion! We will wait until next Thursday to do labs again.

My fear now is that Levi will have bad memories with the lab. Usually in the morning Levi is very excited about P and asks if we can go see P in the morning before school, and I have to explain to him that no, it isn't the right day. Well Friday was not the case with that, he woke up in the morning, looked right at me and said "We NO go see P today! NO P Work!" Uh Oh! I may be in trouble next Thursday. Hopefully all will be good and life will return to the normal, but we shall see!

November 1 - Infusion #18

November 1 - Infusion #18

We got over the the hospital and Levi's anxiety was starting to set in. His listening ears had all but vanished and he couldn't make a decision about anything and was ping ponging from things to things and melting down over everything. This is the hardest part of the whole infusion. As soon as he is accessed it all goes away, it's just the build up for that.

We got settled in to the jungle room, Levi really wanted the fish room, but after seeing who was in there, I think that they really needed the bed with rails more then we did! The clinic was packed! Usually when we go we see several other people filter in and out throughout Levi's appointment. Today people just kept coming in and settling into rooms. Nurse K and Nurse T were both a little overwhelmed and running around like crazy!

Nurse A did Levi's vitals and we settled in to the playroom to play for a few minutes while everything got ready!

Another little boy joined Levi in the playroom with his parents/grandparents. Levi got a little overwhelmed by that as the other boy was non-verbal and loud, so he took off down the hallway with his plane!

Dr. V saw Levi running down the hall and said that he would see Levi next so we flew the airplane to the Jungle. We talked to Dr. V for a few minutes about what was going on and the last month with Levi's counts not going up much. We talked about Levi's rash and the fact that his eye was more droopy today then most days. Dr. V took a look at him and wasn't overly concerned about anything. He did tell us that he has been talking to the doctors in Switzerland who are in the process of  beginning a clinical trial on children that is a med that is just the ADAMSTS13 protein, not the rest of the plasma, but is still made from human blood. And that he has been in talks with them about this and is on the list to get into the clinical trial if/when it makes its way to the USA. But Dr. V wanted us to know that although we are discussing this, it is still a long ways out from coming to the USA if it ever does. But that we will be kept up to date on the trial overseas now, and are on the short list of first invites in the USA. So a little ray of hope, maybe!

Then it was time to head back to play! When we got back to the playroom, Levi settled down a little and even asked if he could get the potatoes for the boy (he had been playing with them when we left).

Then it was time to start doing some work. We headed to the Jungle room and Levi was accessed! The Benadryl was started and our routine started. Levi got very dazy and sleepy, but didn't actually doze off at all this time. Daddy had picked out different movies, so Levi watched Mickey's Halloween first. The plasma got started after the Benadryl was working and we went with our normal routine of 75, then 100, then 125. The big was slightly bigger then previous bags, but since Levi is getting bigger he needs more!

When Mickey was over, Daddy switched the movie to "Home" and then went to get lunch. Levi asked to go potty while Daddy was gone and we made our way to the bathroom just him, and me, and his pole (that thing really needs a name as much as it tags along with us!) Levi did great and was such a big boy riding on the pole and listening to Mommy. When we got back Daddy had come back with lunch and was a little worried that we were missing!

Levi set and ate his lunch and finished watching the movie.

Levi was starting to get a little restless. So he started walking around a little. He ate his cookie while standing on the step to the bed. But kept watching the movie the whole time.

When the movie ended Levi's bag was empty, but we still had to get all the plasma through the line, which takes about 20 minutes. So we set and read books and colored. Levi was antsy, but overall did really well. Levi's counts came back at some point during the day at 128. So 29 point drop from Thursday, but that's not bad at all. And an infusion at 128 is pretty good, that should go up nicely!

At the end the room gets pretty busy again. We do a lot of busy at the beginning, and then it gets pretty quiet for several hours with the nurses only coming in every little bit to make sure things are good. As things were getting busy again Levi seemed a little annoyed. So every nurse that came in he said "You Guys Are Driving Me Crazy!!" over and over and over! Everyone got a good chuckle out of it! Nurse T came in and flushed Levi's port and put in the meds and then removed the needle. Levi was free! We cleaned up the room and as is now tradition Levi went back to the playroom for a few minutes to play!

Then we were on our way home. It took about 40 minutes, but Levi finally fell asleep.

We will be back in three weeks for our next infusion! For all those keeping track that is Thanksgiving week!

October 31 - David's House

October 31 - David's House

Happy Halloween!! We headed to David's House right after Nursery School. The drive up was uneventful. Levi was very good playing with his toys and watching movies. We got to David's House around 7 and got checked in to the Pig room. We headed downstairs for dinner and enjoyed some yummy enchiladas. While we were eating dinner a girl from the college dropped by with a freshly baked cake that they had made for the kids for Halloween. So we enjoyed that for dessert. It was very nice and we definitely appreciate all of the people who provide food for the house!

Levi noticed that the train table had been moved upstairs to the living room and that the trains he had donated were still on it, and he was super excited to play with that!

Eventually we made our way downstairs! I am so glad we did! The entire playroom is brand new!!! It looks amazing and is so nice! To the organization that provided it, thank you, thank you, thank you! Levi loves it!

We set and read all of the new books!

Daddy built a tower with the new blocks!

Choo-Choo!

He loves the train!

Cooking a meal!

Tucking the babies in!

Play with the balls Mommy! 

Look, Crayon Wrappers! Can we open the crayon wrappers! 

He needed trash for the truck!

He used it as a road for the truck!

And your dose of absolute sweetness for the day!!! Make sure that your sound is on! Levi sings and rocks the baby to sleep!

Eventually it was time for Levi to go to sleep as well. Since we were in the pig room it has three big beds, so Levi got his very own big bed! He was pretty excited! Mommy was a little nervous that he might fall out, but he didn't!

Levi slept until 7 the next morning! Then we all got up and went down to breakfast together! Since the playroom is all brand new I was curious what had happened to everything that used to be in it. I asked Jaye, the executive director, and she said that most of it is being donated but asked why I was asking. We had a good talk and a certain something went home in our trunk!! I am soooo excited about it! And I know that Levi will be off the charts excited on Christmas morning when it is under the Christmas tree. I am not going to say what it is as I don't want the surprise ruined for Levi. But I can not wait! And am so excited to have it. And honored that David's House would give it to us. Jaye was very excited to give it to us, and said that it meant a lot to them to know that Levi would have it to play with forever! David's House really is our home away from home!

Levi wanted to play some more so we let him since it was still early.

Then it was time to head over to the hospital. He was not happy about leaving the playroom, but I told him that we would be back! And we will be!

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!