December 31 - 1 year since Diagnosis

December 31 - 1 year since Diagnosis

One year ago today we got Levi's official diagnosis. Daycare closed at 1:00. Jay dropped him off like normal and I went to work. Something told me not to stay at work though. Something told me to go home before picking up Levi, and I am forever thankful that I did. On the answering machine was a message from Dr. W, Levi's Nephrologist, saying to call him as soon as we could. I called him back and I was able to get Levi's diagnosis and our next steps. If I hadn't been able to get this information until after the New Years holiday I think I would have probably driven myself and my husband crazy over the long weekend. This way I was able to get his diagnosis, process it some myself, then go and get Levi, bring him home and put him down for nap, and then I was able to call Jay and my Mom to process everything even more with them.

This past year has been crazy. It has been littered with ups and downs. We have all learned so much about medical stuff. We have met some amazing people between Camp Sunshine, Spreading Sunshine, I Run 4, and this blog. We have dealt with personal relationships that have been tougher then we ever would have expected. We have learned all about FMLA and exactly what we can and can't do under it. We have managed to stay out of the hospital after the initial hospital stay last January. We have had 20 infusions, with 1 allergic reaction. We have had more blood work visits then I can count easily. More band-aids, prizes from the treasure box, and donuts then any one little boy needs :)

A year ago today I had never heard of Upshaw-Schulman Syndrome nor had anyone in my family. And now we know more about it that any family ever should. Our team of doctors and nurses have learned all about USS as well as they had also never seen a case. We have battled with choices and decisions, with knowing what was best for Levi. We have been over protective at times, and probably not protective enough at other times, but it's hard to know where to put that line. We don't want Levi to live in a bubble, but we also don't want him to get sick if we can help it.

We have cried more tears and spent more sleepless stressful nights then I would have ever imagined that we would need to do as a parent. The stress of parenting a child with medical issues is overwhelming at times. It can also be incredibly enjoyable and has opened up a totally different world to us then we ever would have expected.

The past year with Levi has been wonderful. He is an amazing boy and I am so happy that I get to be his mom. The year is not what I would have expected it to be when Levi was born, and I know his life going forward will take lots of twists and turns that we aren't expecting as well, but I am so glad that I get to be a part of his life. And when Levi looks at me and says "Mommy, you are my BEST Friend" everything I do is worth it!

December 22 - Blood Work

December 22 - Blood Work

Today's blood work was a bit of a nail biter. Although we have no reason to believe that his counts shouldn't be good today, we are traveling for the upcoming holiday's so having high counts is very important today.

Blood work today went ok. We are still missing P a lot. Levi asks every single time if she is going to be there. I tell him, that she probably wont be, but he always keeps hoping. Levi did a great job at blood work with Nurse S, even though he really doesn't like her that much. Nurse Pa was also there, so Levi likes that. Since it was the last blood work before Christmas I let Levi get a donut! He loved it!

Blood work came back at 310! Merry Christmas to us!! We haven't seen numbers like that since April! No need to worry at all about traveling for the holidays!! YAY!!!

Next steps: Blood work in 1 week if we make it back from vacation in time. Otherwise we have an infusion on January 2.

December 15 - Blood Work

December 15 - Blood Work

When we got to blood work this morning we had to wait our turn. Levi did a pretty good job waiting. He walked around and looked at magazines. And was being a little silly!

Finally it was time to go in. P has taken a leave of absence so we had S today. She did fairly well with Levi, but he definitely misses his P!

We were out the door and on the way to Nursery School before we knew it.

Levi's counts came in a little later with a count of 249 so the infusion made his counts go up and that is what matters!

Next blood work in one week.

December 13 - Infusion #20

December 13 - Infusion #20

We got over to the hospital and got checked in. Levi had brought a popcorn bucket for Dr. V and the nurses too, and he was very excited to lug it in all by himself to give to them.

Once we gave them their Christmas present we got settled in to the jungle room. The animals were all dressed up for Christmas! Levi thought it was quite funny.

Next it was time to do some work. Nurse A found Levi and we headed over for vitals. He was his normal bugger of a self with vitals. He doesn't like to keep the oxygen sensor on his finger, it is way more fun to play with then to let it work!

 Since we were a little early they weren't quite ready for us with his bennadryl and plasma so we got to play in the playroom tube free. Levi loves to get to play tube free.

 It wasn't long of playing before we were back to the jungle to start the Bennadryl. Levi stopped at the drawer for snacks as usual! He loves the snack cupboard.
Dr. V is on vacation singing in Europe so we met with Dr. K. She gave us some information about a trial that is being done on a synthetic ADAMSTS13! It's gone through one adult trial which showed very good results. Dr. V and Dr. K have put Levi on the short list to be in the trial if and when it opens up to children his age. We are probably still a ways out, but its a great sign that anyone has even been able to make a synthetic version. It would very much change his life! Instead of getting a bag or bags as he gets older of plasma he would receive a small vial of ADAMTS13 which we would eventually be able to learn how to give at home! What a difference. We are probably still years out from this being on the market. But any hope for his future is a positive in our lives.

Levi likes to play with the "wheel" on his line. We have to be careful now though as he is almost getting strong enough to actually make it work and stop the plasma or bennadryl from going in. 

 The plasma was started and so was Planes! Our always movie. Levi was not wanting to really sit still much so Mommy pulled out the bag-o-fun and made a table for Levi in front of the chair and we did art projects. We colored, did stickers, and even painted! Levi loved it, and it was something different some kept him entertained for quite awhile. Turtle never went far away from the fun!

Planes was still on the TV so he was watching that off and on too!

 After Arts time Levi said that he was tired and we cuddled under a blanket while Daddy went to get lunch. He didn't fall asleep at all, but he did at least relax. Then he ate lunch and was a crazy man in the chair.

Finally the infusion was done. Levi got his tubie taken out and as per usual he wanted to go to the playroom to play for a few minutes.

 On the way out Levi got to pick a Christmas present! He was pretty excited about it, but the bag was big, so he half dragged it half lugged it out.

 We got in the car and Levi opened his present. He got a new book, a new stuffed animal, a solar Dory, a wrist rattle, and an Elmo bite toy.

 Levi stayed awake almost the whole drive home. Falling asleep with just a few minutes left in the drive. When we got home I transitioned him to the couch and he cuddled up on me and fell asleep for another 2 hours! Finally I was able to sneak out from underneath him, and he slept another 30 minutes on the couch by himself.

Levi's counts for the day were 215 so lower then we had seen for awhile but still great numbers. All in all the infusion went well and we are in the clear until our next infusion after the holidays!

December 12-13 - David's House

December 12-13 - David's House

Mommy and Levi worked from home today due to the snow storm. Our David's House weather streak continues. We did lots of fun things during the day, we played out in the snow, we played play dough, we did puzzles, and Mommy worked. Nap time was not a success at all. Levi didn't want to settle down, so he ended up coming back downstairs and relaxing in the living room while I worked. As soon as Daddy got home we were on our way to David's House, so we were on the road closer to 4:30 instead of 5:30. The plan on the drive up was to stop at Half Way McDonald's, but about 20 minutes into the car ride, I looked back at the very quiet back seat, and Levi had fallen fast asleep! We didn't want to wake him so we just drove straight thru and decided we would figure out food once we got there.

As soon as we got to David's House we got checked into the Lion room. Levi had brought a present for all his friends at David's House in the form of a popcorn bucket. He was so excited to bring it in and give it to them.  Then we found out that dinner had been made that night and it was delicious! Thanks for falling asleep in the car Levi! We had lasagna, salad, bread, fruit salad, and lots of desserts.

The last time we were at David's House Levi had found these two little planes that he lugged around and played with the whole time we were there. As soon as we got there he insisted on finding them again. We eventually did find them and he didn't let them go until we were leaving the next day, even taking them to bed with him, it was very cute! Levi made a friend while we were eating and wanted to play at the train table with him.

Then we headed downstairs to play!

Before we knew it it was time for bed. We headed upstairs to start getting ready. Levi and I were putting on our PJ's when Daddy said that he had a surprise for him. Since we stay in the Lion room now Levi doesn't get a cot anymore, he just sleeps on the single bed that is in the room. Therefore he doesn't get the cute kid sheets that they have or cute blankets, it's just the standard sheets and blankets. Daddy had noticed that the Twinkle Twinkle Little Star Blanket was on a cot in the storage room that no one was using that night, so he brought it into the lion room to put on Levi's bed. Levi was so excited!

So excited to have the quilt!

Cuddling down under it. 

It took Levi quite awhile to fall asleep because there was a strange light in the room. There is a locked storage room off of the Lion room and the light was on in the room. So it was glowing around the door.

 Levi did finally fall asleep.

The next morning Levi woke up fairly early! So Levi, Turtle, and I went down to the playroom to play!

Then it was time for breakfast and to head to the hospital. We said good-bye and happy holidays to the people at David's House since we wouldn't be back until 2017.