August 18 - Blood Work

August 18 - Blood Work

We got up this morning and I told Levi that we had to go to the lab but tried really hard not to say P in case she wasn't there. Which turns out to be a good thing, because well she wasn't there. We got there and there was a line again. Nurse D was out back working with someone else when we got there, so we signed in and set down to wait. Levi was being pretty good, but a little crazy.

D asked if she could take the other lady ahead of us since she was waiting for Pa to come down (she had called for back up help), I said sure, but in my head was a little like "umm...  you are sooo slow, I would rather not wait for another person, but I also don't want to sound like the jerk who says no" And sure enough, Pa got down about 30 seconds after D took the other lady out back, and it was about 10 minutes before she was done with her.

Finally it was Levi's turn to go out back. It seemed like either the computer system was down or they weren't using it for some reason. So that added a little stress to the whole situation. Levi picked out his band-aid and then climbed up into the chair to wait. He was a little annoyed with how long the wait was, and kept looking at D and Pa and saying "Purple and Green, Purple and Green". The kid sure does know what needs to be done for his blood work.

I was pretty nervous for the draw since it had gone some crummy on Monday. Pa did the draw and she got it on the first stick. She did have to wiggle it in his arm some, but it was only one stick, so I will take it. Levi was off and running to the treasure box before they had the band-aid all the way on. He picked a paper stick sliding thing, I didn't see it lasting long, but he really wanted it (and sure enough, it was ripped by the time we were to daycare, but he wasn't upset by it, so all was good)

I had a conversation with Pa about where P was. (Our family wishes her family all our thoughts and prayers and are very glad to hear that things are going well!! We hope to see you soon, but we definitely understand taking time to be with you family at this time!!) And then we had a conversation about USS and what it is and why we do blood work so often and that it wont ever change or get better.

Levi headed out to see his fountain.

Levi was not in a stand still mood today!

Then we were off to daycare!

I started calling for Levi's counts around noon like usual. When I left work at 4:05 to go get Levi there were still no numbers. Since they called on Monday at like 4:35 we decided to wait, and sure enough the counts came in at 4:55. So frustrating!!! This is a stat lab done at 8am, how in the world we can't get the counts until nearly 5pm is ridiculous!!
His counts were 286, so a great number!!

August 15 - Blood Work

August 15 - Blood Work

Levi didn't have the greatest weekend. His legs are pretty bruised and scraped up and his runny nose is still in full force so we decided to take him for blood work just to make sure that everything is fine. We figure it probably is (he played hard with his cousins over the weekend which explains the scrapes and bruises) but we would rather be safe then sorry, and Levi loves to see P so he was perfectly happy with the arrangement.

I was fully prepared for an easy lab draw. We walked in the door of the hospital and Levi requested a donut. I said "no, you got one last time". He was ok with that and wanted to head to his fountain. Well today's draw was anything but easy, and this is how I dropped Levi off at daycare:

Sometimes plans change!

We got over to the lab and P wasn't there, it was another tech sitting there. Uh oh! My easy draw may not be quite so easy. There was also a waiting line! Like almost every single chair was full. Uh Oh!! Levi climbed up in a chair like a good boy while I signed him in. I came to sit next to him and he very loudly said "Where's P?" The nurse who was there seemed sad! Finally there was only one person ahead of us. The Nurse, whose name is Pa, called for a back up nurse. Nurse D came down while Pa was doing the last person ahead of us. Levi did fairly well with the wait, but he was definitely very frustrated with having to wait. He kept asking "Can I go in?" and "Where's P?" We took some selfies which kept Levi entertained. He was giggling his bum off for a little while making silly faces.

Blowing tongue bubbles 

Grinning

Caught a giggle.

Finally it was Levi's turn to go in. Pa and D seemed a little frazzled with the paperwork for a standing order, and seemed confused that  a young child had a standing order. Levi picked out his band-aid from the cupboard which also seemed to frazzle them. He got up in the chair and opened his TMNT band-aid. Then as Pa and D were walking over he looked at them and again said "Where's P?" I said I bet she was with her Mommy, which seemed to make Levi happy. D seemed a little frazzled trying to find the right tubes and such, Levi looked at her and said "Green and Purple Please", I think the kid could do this himself.

This is where the fun and games turned to not so nice. D tried his right arm, the arm we always use and was unhappy that there was a bruise there from last time. I kinda looked at her with a "what do you expect, he gets stuck 1-2 times per week" look. She stuck the needle in and wiggled it around and couldn't get the vein. At this point Levi was very unimpressed. Pa also seemed lost as to what to do, I said, umm... I got this, I don't need a nurse to hold his arm, we have a system. Then she decided to try his left arm. I told her that very few nurses have EVER been successful over there, like less then 3, but she wanted to try. Well low and behold, she misses, and says "well the vein over here isn't that great"... umm... yea, that's what I just told you! Thanks for listening to me. So then D handed the job over to Pa, who went back to his right arm. She was able to get it on the first try, but Levi was very unimpressed. He was stuck 3 times!

He wiggled down and headed to the treasure box. D told him he could pick two prizes since he had to get stuck more then once. He picked a red frog and a blue looker. He gave high fives and we were on our way out. He asked for a donut again and I couldn't turn him down after that blood draw. We had been there almost 40 minutes from time of arrival until we finally left. And he had been great the whole time!

So we got a donut!

We headed towards daycare. We got on the dirt road and they were rolling/grading it again (they do it about once a month). It's nice when its done, but its a pain to drive on while they are working on it as you can't pass, and believe me you need to be able to pass on that road.

Yes I was stopped when taking this picture (the road was empty today). 

Drop off went well, until I was pulling out of the drive way. Then he started balling in Miss M's arms and asking for Mommy. :( He has been in a huge "I need my Mommy!" mood lately.

Counts still hadn't come in at 4:00 when I headed home. So Jay called. K was a little annoyed that we were calling (apparently she had just gotten off of our voice mail at 4:40 when Jay called). Oh well, maybe you should call earlier then 4:00 when we do a stat lab at 8:30 in the morning. So frustrating. His counts came in at 260, so a great number!

Next steps: Labs again on Thursday.

August 11 - Blood Work

August 11 - Blood work

Today's blood work started out great. Levi was in a pretty good mood in the morning and the drive down went well. We were running a little later then hoped as we both slept in a little, but we weren't crazy late.

Got to the lab and there was no line no waiting so Levi went running right in. He picked out a band-aid and wanted a Candy one again. He asked for fish. I looked at every band-aid in the box (through the wrapper) and could not find any that had fish on them. He settled on one without fish, but wasn't as happy.

He climbed up into the chair and P got the party going! :) The draw went fairly well for how he has been doing lately, only a slight roll of the arm, so it went well.

He started to jump down from the chair and P got her high five and hug, and then he headed to the treasure box. Levi picked out a mini skateboard from the treasure box and then we were off and running.

Playing with his skateboard in the car.

He stopped at the fountain and then asked for a donut. Since I needed to feed him breakfast before taking him back home to the baby sitter I said sure. I told him that he had to order it, and he did a great job, telling the clerk that he wanted "a donut, chocolate, sprinkles, please". I'll take it, he did good!

Donuts are yummy! 

Then we were on our way home to the sitter who was watching him as we have no daycare.

Counts came in around 3:00. Levi's numbers were 175. Not great, but a definite increase from the infusion count. We will see how his weekend goes and then decide if we take him for Labs on Monday or wait until next Thursday.

August 9 - Infusion #13

August 9 - Infusion #13

We barely made it over in time for our 9am appointment. Thankfully clinic is very flexible and would have been more concerned that something was wrong with us if we had been late then the fact that we were late.

Levi wanted to play as soon as we got there and he also wanted to pick out a snack. He picked out gold fish and then was very angry that he couldn't take them to the play room with him (its a very strict no food in playroom rule). We had Nurse K today and Nurse T was on vacation this week. Levi settled into the playroom to play while everything got ready around him. Then it was time to go do work with Nurse A. He did great with his height and weight, and not too bad with his temp, oxygen, and blood pressure. Then it was back to the playroom to play.

Soon it was time to access his port. The access went pretty well and then the Benadryl got started. We put on planes and Levi settled down a little. I thought he might fall asleep for a minute, but that wasn't going to be the case. Dr. V stuck his head in for a minute and asked if we had any immediate concerns, when we said no then he said he would be back later as he needed to perform a procedure up in pain free.

Levi's plasma came up and we got that started.  We continued to watch planes and then Levi needed to go Potty. He rode over on his IV pole and was successful. Jay and Levi headed back to the room for a minute while I got myself a drink. I walked back into the room to Levi squirming and crying "ouch Ouch Ouch... It Scratches" which is his new word for it hurts. I took a quick look at his port and it was indeed not looking right and was getting a big bubble on it, I knew immediately that he had pulled the needle out of his port and the plasma was being pumped under his skin (not dangerous, but I am sure it does sting). I ran and got Nurse K who came right in and looked at it. She attempted  to push the needle back in, but that didn't work so she deaccessed him and we put a whole new needle in. Levi wasn't overly happy about that. I don't know how long the area stays numb for, but he didn't cry, but was definitely unimpressed. Nurse K put a HUGE sticky bandage on the port to hold it in place this time and we got right back to where we were.

Zoning while he watched Planes. 

We shut the lights down after the 15 minute check with the hope that Levi would catch a little nap, but no such luck. I was zoning out holding him, but every time I was almost asleep, he would look at me and say "Mommy!" Once Planes was done we put on Inside Out. Jay had gone and gotten lunch, which Levi looked at, and barely touched. Oh this was a long day. The faster infusion time is nice, but it still takes a long time.

Dr. V stuck his head in again along with a new resident that is working with him. We didn't talk about much. Dr. V looked at Levi and said, "Ok, we will discuss options at the beginning of September". Levi's counts came back at 151 today, so a fairly large drop since Thursday's blood draw. Good thing we were here. Levi has a little head cold/runny nose so I am sure that is contributing to his counts dropping.

Finally the last of the plasma had flown into him and Nurse K came back to deaccess his port. Levi was not impressed about having to take off the huge bandage. Nurse K got the spray and that helped some as it made Levi giggle. Finally it was off. The meds were in and the needle was out. Nurse K had an Abby Cadabby band-aid so that made Levi's day.

Levi asked to play in the playroom for a few minutes before we left which we gladly allowed him to do. I cleaned up the Jungle room while Jay and Levi went and played. Then we were on our way to the car.

Levi didn't sleep great in the car on the way home. He hid under his blanket and finally did fall asleep but it was a long car ride and a short nap.

Next plans: Hoping that his counts go up well with this infusion and then we will be back in three weeks.

August 8-9 - David's House

August 8-9 - David's House

It's time to head back to our home away from home! We are so grateful that David's House exists. Without it, our lives and these infusions would be much more stressful!

A few pictures of David's house. 

Since daycare is closed this week, Levi was already home for the day with a sitter. Mommy also worked from home today because the contractors were at the house shingling Levi's playhouse!

The playhouse is shingled!

So as soon as Daddy got home we were on the road. We decided to stop at Taco Bell/Long John Silver's for dinner and boy was that a mistake. SLOWEST fast food place I have ever been too. Took forever! But Levi got a slushy so he was happy!

We got to David's house and Levi was very excited. He loves getting to play there. We got inside and learned that there is a brand new house manager. She is very sweet! We set and talked to her for a little while. We found ourselves in the Bird room. A new room for us. It is out back in the very quiet section, a section we have never been too, in fact neither of us even remembers walking out there any time that we were investigating the house. The room is huge! And has a great view of the playground.

Bird Room

Large Room. 

Awesome view of the playground.

The only negative was that the house was about 75% full and they were out of cots. Levi got a crib which is fine, but he was very disappointed. All day he had been talking about getting to sleep in his "Twinkle Twinkle Little Bed" from last time we were there.

Levi and Daddy headed out to play and Mommy took 5 minutes to unwind from the 2 hour drive before heading outside to join them. We played on the playground and then went for a little walk and watched the Dart come in for a landing.

Jay and Levi out playing

Drive Drive

Levi has learned to "swing on the slide" from the big kids!

Watching the Dart Land.

Walking back to David's House.

Then we went inside for snack before bed. We talked to the house manager again for a few minutes while Levi ate a brownie and then we were off to bed. Levi did fairly well for the fact that he was in a crib and fell asleep after only a few minutes.

Sound asleep!

This is the point that if I had a crystal ball and knew how the night was going to go I would have also gone to bed, but since I didn't I decided to go hang out in the living room and watch the Olympics for awhile. Finally going to bed around midnight.

At 2:50 Levi cried once and Jay got up with him, he went right back down though thankfully! At 4:45 Levi was yelling "Mommy, I need my Mommy". I got up with him and tried to calm him back down. At 5:15 I gave up and had him climb in my bed. At 5:45 he was done in my bed and asked to go back into his cribby. At 6:15 he had to go potty. At 6:30 I forced him to stay in my bed and I got him to go back to sleep by holding him, however I swear a kid in Mommy's bed grow's 6 feet and 18 more arms and legs because suddenly I had no bed space anymore, so I got up and set on the floor until it was time to get ready for the day. Thankfully he is adorable so it was at least something cute to look at while I set on the floor wide awake.

Bed thief. 

I let him sleep as long as possible and we barely made our 9am appointment time (usually we are 30-45 minutes early because Levi has gotten up early). We didn't have time to eat breakfast at David's house but I did grab a few things for Levi to eat at clinic.

Thanks as always David's House. We will see you again in 3 weeks!

Saying "Bye Bye David's House" to the door. 

August 4 - Blood Work

August 4 - Blood Work

Today started out as a pretty good day. Levi got up and got moving quite nicely! He was being a little ham! But he was in a good mood, and that's better then a lot of mornings so I will take it!! :)

Picture in front of Mommy's car! 

We got to blood work and all went pretty good. We are working on him getting back to not moving and it's a struggle. He was doing so great, we were contemplating trying him sitting by himself instead of on my lap, but now we are back to him moving all the time. The bugger is it doesn't matter how tight we hold him the way that he moves he basically tenses his muscle and rolls his elbow so the vein moves. While saying "ouchy"! So the draws have been a little harder then normal lately. P is struggling with it the most because she feels really bad if she misses on the first try and has to wiggle it. Once the draw was done he headed right over to the treasure box. He picked paper that looked like money and a purple pencil.

"Somebody turned the fountain on!"

"No donut... OK... Let's go!"

We headed out the door! Once we got outside Levi wanted to call Grammie to show her his band-aid and that he had "made a fish." He wanted to ask her to "make it swim!" It was super cute. We settled on sending pictures to Grammie and an e-mail. That made him happy!

"I see the fish!"

Smile for Grammie and showing her the fish!

Counts came in today around 2:00 and were 227! So a great number since we are going into Infusion next week!

July 28 - Blood Work

July 28 - Blood Work

Blood work this morning went well. Levi moved his arm again, but other then that it went great. Levi was very excited this morning to go see P as he had bought three new boxes of band-aids and he wanted to give them to her. He went running in to hand them to her and then was very excited when she told him that he could put them in the band-aid cupboard.
He picked out a candy band-aid and was very happy to climb up in the chair to open it. He is doing really well with learning how to open the band-aid package and knowing that sometimes he has to flip the package over to find the place where it is partially open.

Levi picked out a blue looker and a plastic spider from the treasure box. The he insisted that he didn't like spiders they were yucky but that he didn't want to put it back. It was very cute.
As he was getting ready to leave he gave P her hug and she said "I love you Levi" and he looked at her and cuddled closer and said "I Love you P"!! Awww.... It melted her heart! And mine! It is so tough to have to watch your kid go through all of this all the time, but to see him at least form relationships with the people he sees all the time makes it a little easier.

Numbers came in around 2pm from Dr. V himself. Levi's counts were 248! So a great number!!

Next plan: Blood work again on Thursday 8/4.

July 22 - Blood Work

July 22 - Blood Work

Levi was a little confused this morning about why we were doing blood work again today since we just did it yesterday, but when he realized that meant he got to go see P and he got to go with Mommy instead of Daddy he was pretty stoked!!

The blood work went ok. Levi has started to move some before P gets the needle in and that is causing his arm to roll and the vein to move. He doesn't seem to care how much she has to wiggle the needle inside his arm, he just doesn't want it to go in. He doesn't cry or wiggle in pain at all it seems to be more of an anxiety/fear of it thing. It's very strange. But overall Levi did well. He picked a transformers band-aid, it had the transformers name on it, but since I don't know them at all I don't remember who it was.

He picked a purple "looker" from the treasure box and was excited to see his fountain.

I can't say no to the boy two days in a row so when he asked for a donut he won. I think he enjoyed it! And I know that Miss T LOVES it when we show up to daycare like this!

Counts came in around 11 again. Wow. K is on a roll!! Counts today were 200! I'll take it, That's an 18 point increase in 24 hours. The infusion is definitely working. So no need to worry.

Plan: Next blood work will be next Thursday on 7/28.

July 21 - Blood Work

July 21 - Blood Work

Today's blood work went quite well. Levi did great as always!

He picked out a princess band-aiid and ended up getting Ariel an picked a pencil and paper for his prize. I think we have about 14 of those pads of paper now. Anyone in need of them?! We don't let him have pencils in the car so he quickly forgets about them, but then picks them out again at the next blood work. Cracks me up.

He checked out his fountain and didn't throw a fit when I said no to a donut, so I will take that as a win. We got to the car and he put his sunglasses on in the parking garage and told me he was a cool dude!

He also insisted that I take a picture of his nosey!! So here it is for all to see!!

Counts came in around 11:30 in the morning! WOW!! We haven't seen counts that early in a LONG time. Counts however were very low. ;( 182. Only a slight increase in his number since infusion on Tuesday and if you take into account the 40 point approximate difference between the two labs it was actually a drop since Tuesday. Not what we like to see. Jay and I discussed what we wanted to do and decided that we would do lab work again tomorrow to see if it was increasing. Since Dr. V is on vacation we made the call on our own (knowing that he would probably agree with us), depending on what counts come back as tomorrow we will then decide if we need to call Dr. V's staff or not.