February 13-14 - David's House

February 13-14 - David's House

Today was a snow day so Levi and I were home all day. We were watching the weather carefully all day to make sure that we could safely make it to David's House tonight. Around 3:00 the roads were looking much clearer and when we had talked to David's House in the morning they had said it had stopped snowing there around 8am, so we assumed the roads would only get better as we headed west.

We headed out around 4:30 and the plan was just to go as slow as necessary to safely get there. We gave Levi a snack in the car and put his movie on and we set off on the road. The roads weren't that bad. About 25 minutes from David's House we ran into snow again, so that was a little hairy in places, but not awful. The worst part was really the fact that it was windy so the car was blowing all over the place and there was lots of snow across the roads from being blown.

We arrived at David's House around 6:45. We headed inside and got checked in. We were in the pig room. Levi was a little disappointed, he had hoped we would be in the space room. But once we got upstairs he settled right in and was trying out the bed.

 Then we headed downstairs to find some dinner. Shepard's pie had just been made! Yummy!!! Levi gobbled it down.

 Then he was wondering around the kitchen and saw another couple getting Popsicle's out. He convinced them to let him have one, wasn't a very hard convince he just asked nicely and smiled!! So he set and ate all of that.

 Then it was time to go play!!! Levi had a ton of fun downstairs playing with everything! From stamps, to blocks, to the slide, to food, to coloring, to everything he just kept playing!!

Levi's pretty picture!

 Before we knew it it was past bedtime. We headed upstairs for drink and snack before bed. He ate a cookie and made a friend with a little boy.

Then we were up for bed. We did our normal bedtime routine and then we started to leave the room. I headed next door to take a shower. Levi had a rough time with that. He kept telling Jay that the noise was loud and scary. Once my shower was done I went back in to the room to say good night to Levi again and then we headed out into the hallway to see if he would fall asleep. It took a long time but he finally did. Jay and I headed downstairs to relax and have some dessert!

Thankfully I didn't stay up late because it was a ROUGH night of sleep for Levi! He was awake over half the night! Up and Down he just couldn't settle. He spent time in my bed, we spent time on the floor, he spent some time in his own bed, it was just a rough night. Sadly this is not a first or even that uncommon lately, this little boy has decided that sleep is the devil! I really should buy stock in Mtn Dew! :)

I finally gave up the sleep battle around 6. Levi and I headed down to play in the playroom. Then we had some breakfast before heading upstairs to get ready to head to the hospital.

As we were leaving we got to see Jaye and Cathy! Levi always like that! :) Then we were on our way over to the hospital.

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

February 10 - Blood Work

February 10 - Blood Work

Yes I know it's Friday and not Thursday, but with the storm yesterday we pushed off blood work until today. Due to an important meeting at work this morning and not knowing what the roads would be like Levi and I got up VERY early this morning to go do blood work.

We headed out of the house at 6:45. Levi was tired but in good spirits! And was chatting along on the way down the highway. Took about 40 minutes to get to the hospital, instead of the normal 28ish. The final turn into the hospital was a little hairy! My car thought going a little sideways around the turn would be fun, but we made it safe and sound.

We got inside and had to go to registration today as we are also running Levi's thyroid labs today. Registration went quick and smooth! And we even got some GREAT news! P is coming back on Monday!!! YAY!!!! :):):)

After registering we headed over to the lab. There was no line so that was nice. I handed over the thyroid labs and also informed about the standing order so I knew the paperwork would take a few minutes so Levi and I settled in.

Levi found a crossword puzzle and set down to look at it. He said "Like Grammie Helen! I need a pen!" It was super cute

Looking at our animal book again! 

Since there was no one else around he did a lot of be-bopping between chairs. 

Once the nurse had gotten the paperwork done she called Levi inside. He headed right to the band-aid cabinet. She seemed a little taken back, but not bad. She got down to try to help him pick one and he seemed a little annoyed by that, but he eventually picked the fish again!

We climbed up in the chair. And she was all ready to go! Always nice. She had a purple tube and three yellow tubes (two of the yellow ones are for the TSH and Free T4 for thyroid). Levi said "NO!!! I need a purple and green! Not yellow!" She looked at me like he was crazy. I explained that his tubes are normally purple and green. She seemed a little taken back that he knew that. It seemed like she was going to ignore him but then thought about it for a second and said, "you're right! It's a stat lab, it should be green! Thank you for knowing that!" She switched out one of the yellows for a green. She started going through the motions. I was holding Levi's arm, when he started to have a melt down again. She hadn't put a tube on the end of the line. He gets really really upset by that. I don't think she understood what he meant. He just kept saying "You have to put a tube on before the pinch! You have to put a tube on before the pinch!" I think that distracted him enough that he didn't move when she actually put the needle in, then she put a tube on and he was content. So it was a super easy draw. She did the two yellow ones first and that slightly annoyed him too. But he just kept telling us the colors!

Before we knew it the lab draw was done and he was off to the treasure chest! He picked out a pink slinky! He has been obsessed with slinky's lately! (and I have mastered my skills at untangling a slinky!)

We headed to the car so I could get him to school and get to my meeting on time!

Regular lab results came in crazy quick today! He's numbers were 231. A great number heading into an infusion on Tuesday.
We haven't gotten the Thyroid results yet, but should get a call from Dr. C on Tuesday (he doesn't work Friday's or Monday's). Hopefully it will come back that his counts are off and we need a med change and that explains his lack of sleep lately! Otherwise I am at my witts end! And my exhaustion is getting over whelming with no end in sight!

Next steps: Infusion on Tuesday Feb. 14th! Happy Valentines to us! Infusions have fallen horribly for holidays this year. He missed trick or treating in our town because we were headed to David's House. And now he is missing his Valentine's day party at school because we will be at infusion. I know it wont always be like this, but it makes it hard to see how much he is missing. Thankfully he doesn't even know what he is missing this year!

February 2 - Blood Work

February 2 - Blood Work

Back to our regularly scheduled blood work. We got to the lab and WOW was it busy!! There were 6 people ahead of us! And at least 3 people waiting at registration who would be behind us in line for the lab. What a crazy morning!! We settled down in a chair to wait. Levi wanted his animal book again, so we read through the book 4 or 5 times. Then we played on my phone. He played fireworks for awhile, and then played create the fireworks by connecting the dots. He did a great job connecting them. 30 minutes later it was our turn!

 We headed into the lab. It was Nurse D. We haven't seen her in quite awhile but I knew that she had great skills and could do Levi no problem. She had gotten the right tubes so Levi was happy. She got him on the first stick so that made Levi happy too! The lab work part went super quick! Levi was off to the treasure box before we knew it. He picked a 24 piece Mickey Mouse Puzzle. Should be fun to help him with tonight. They have really been working on puzzles at Nursery school so he is all into them right now.

Results came in a little later then expected, but not crazy late. His counts were 299! Great numbers :):)

Next steps: blood work again next Thursday.

Levi and I had a Mommy and Levi night Thursday night as Jay was busy. We went to Chuck E. Cheese and Levi had a blast. He was slurping pizza, playing games, climbing and sliding! Knowing that his counts were up so high took off the stress of taking him to a place where he will pick up all kinds of other kids germs!

January 30 - Blood Work

January 30 - Blood Work

Well the weekend wasn't bad but it wasn't great either so we decided to do blood work again this morning. He has some bruising, all in pretty typical toddler places so nothing crazy, just wasn't a particular rough weekend to be bruising that much. Also he had some stomach issues yesterday, over night, and this morning, and stomach bugs can knock him off his feet quicker then anything else. So better safe then sorry.

We got to the lab and there was a bit of a wait again so Levi wanted his animal book. I don't remember exactly when the book came, but a volunteer brought it over to him one day when we were waiting and told him that he could look at it, and then just leave it on the table and she would clean it up. I figured we would never see it again, so when he asked for it this time, I told him it wasn't there, so we went looking for a magazine and low and behold the book was in the magazine rack! It's a noisy book about animals. Levi loves it! But it definitely makes my life a little more difficult with trying to make him be quiet. But he did pretty well.

 It was Nurse M, who is super nice but not the most experienced and since Levi was in a mood I asked for Nurse Pa to come down and draw Levi's blood. She is always up for coming down if she know's it's Levi! She has started to bring him stickers when she comes down, so he likes that! As we were sitting and waiting Levi had to go Potty, so in we went. Really I think he just likes to delay and thinks that maybe I am going to let him Pee in a cup, which is apparently the most hilarious thing ever to a toddler.

Then it was on to the draw. He helped Nurse Pa pick out his tubes. He asked for an extra tighty tight and was playing with it. He was having a blast, but definitely almost totally accidentally punched Nurse M in the nose while stretching it. The actual draw went fine. :) Nurse Pa got him on the first try and that was nice! Then it was off to the treasure box. And what a nice surprise, the couple who refills it had been there and it was full to the brim with cool toys again (it had been dwindling down to the crummy stuff at the bottom again). On the top was a helicopter and Levi went crazy! He was so excited for it. Here are the best pictures I could get with it because he was just flying it all over the place.

Then we were off to school!

Counts came in around 10 today, his count was up to 267!! YAY!! An amazing number and a great increase! The infusion worked! Just took a little longer then some days!

Next plans will be blood work again on Thursday just to continue on our regularly scheduled program!

January 26 - Blood Work

January 26 - Blood Work

The first blood work after an infusion is usually pretty calm and expected that numbers will be fine so no stress. Levi and I got up and out of the house in no real hurry this morning.

Levi still gets so excited when we are pulling in to the hospital that we are going to "P's work!" and asks me every time as we are walking in "Is P here? Is P here?" when I remind him that she probably wont be and that he is home taking care of her doggy's he looks at me and says "I think P's here!"

When we got to the lab there was a bit of a wait so Levi climbed up in the chair to wait his turn.

When it was finally our turn he went running in to find his band-aid. He picked a Ninja Turtle band-aid. It was a different nurse then we have had before, but she seemed confident to do Levi and he was in a good mood. So we went ahead and did the stick. :) The nurse was very nice but had never done Levi's paperwork before, so she picked out a yellow tube instead of a green one. Levi told her that was wrong! She looked at me and said, "Is this a quick order?!" I said, "yes" and she looked at Levi and said, "then you are right, it should be green! How silly of me! So glad that you were here and told me what color it should be!" and she changed the tube to green. He was sitting there beaming like "I was right!!" The stick itself went ok. Levi was fidgety and she missed the vein the first time. Then she got it in the tube, but got nervous and pulled off the green tube quite quickly to begin filling the purple tube. Once the purple tube was full she pulled it off and took the needle out of Levi's arm. That's when she realized the green tube wasn't actually all that full, and she started to panic that it didn't have enough in it. She asked me what we should do. I told her "send it to the lab, if they can do it great, if they can't fine. The green tube is the LDH which isn't as important to us as the purple CBC tube!" she was like "are you sure?" I told her again that yes I was sure and she finally agreed. She was very very sorry, I told her no biggie! And she relaxed some. Then it was time to head to the treasure box. He picked a green fish! He gave high fives to the nurse and we were off.

Then it was off to a donut. Levi did a great job waiting in line. He ordered the donut, and I gave him the cash and he paid for the donut and said Thank You. The lady who works at the cafe (whose name I really should know by now!) Love's Levi! Since she handed him 3 quarters back she said, "Now don't go throwing those in the fountain, give those to Mom and here is some money for the fountain" and she handed him 3 shiny pennies! He was so excited. So off he ran to the fountain and one by one he put the pennies in to the fountain and made a wish! It was so cute!

 Then we were off to school!

Count's came in a little later that morning. They were 204. Hm.. A great number! Anything that is 3 digits and starts with a 2 is great, but it is a 16 point drop two day's post infusion is never a good sign. So we will watch him over the weekend and see what the weekend brings. If we are seeing any concerns then we will redo labs on Monday!

January 24 - Infusion #22

January 24 - Infusion #22

We headed over to the hospital and I had a secret surprise for Levi in my bag. Since the last infusion had been rough (allergic reaction we didn't know about!) I wanted to make sure this one went as well as I could make it. So I brought his "LVI cape". When I pulled it out of the bag and showed it to him his WHOLE face lit up like it was Christmas morning! His whole demeanor changes when he has his cape on, it's like he feels like he truly is a super hero and can conquer the whole world. It makes me smile so much!

 When we got to check in and they asked for a name, I said "Levi" and he says "No Mommy, I'm Super Man!" It cracked all of the ladies at registration up and definitely put a smile on their faces. They quickly hurried to find him some super man stickers! Which he proudly shared with his fellas. Not the greatest picture but he set right down on the floor of registration to put a sticker on him, a sticker on owl, and a sticker on turtle! (No fellas were hurt in the stickering processes! However some minor owl fur was lost in the de-stickering process, which was hid from Levi!)

 After we were registered he proudly and confidently walked down the hallway to the Jungle room!

Since his appointment wasn't technically until 10:30 they were ready to work with us, but weren't rushing around. So once we got settled in the room, we went and visited Nurse A to do our first set of vitals and then ran to the playroom for some fun time.

Once Nurse T was ready for us we headed into the room to get accessed and start the bennadryl. Levi likes to mix things up on me so he wanted to sit on the table for access today. He has done it once before and it works, though can get a little tricky!

Waiting for Nurse T to prep everything

The worst part of getting accessed for Levi! Removing the sticker and cream. He HATES that part!

Nurse T lets him help pull the blood out once she has him accessed, he loves getting to help!

Helping flush the port! He likes to push it in! 

Putting Levi's shirt back on. He thought it was hilarious! 

Dr. V had a student doctor with him this week. Not an uncommon thing as it is a teaching hospital. Generally Dr. V will send them in first to do a preliminary exam and then they go back and report their findings to Dr. V who then comes in to check for himself and discuss anything with them they may have missed. This is a process we do not mind doing. Levi on the other hand is NEVER impressed by this. Why you ask?! One would assume because he gets prodded twice and looked all over by someone new. But with Levi, nope, the problem is that we have to turn his movie off twice instead of once! And how dare anyone get in the way of his movie!

The student doctor did everything she could to not make Levi move, including bending over backwards pretty much to look into his ears. Levi has pretty excessive black ear wax (he gets it from me!) so we are often cleaning out his ears. I call it tickling his ears and it makes him giggle and he lets me do it. The other day his ears were excessively full and it was excessively sticky so  I asked him if he had mud in his ears. He said no. So I asked if he was growing potatoes in there. He said no. I said, oh, if you grew potatoes you could make your own french fries. He looked right at me and said, "no french fries Mommy, growing burgers"! So when the student doctor was looking in his ears, he kept asking her if she saw any burgers. But he wasn't talking very well and it kept coming out like boogers. We were all getting a good laugh about it. Needless to say he had neither boogers or burgers in his ears.

After the student doctor left we got Cars 2 (that's right folks, he asked for Cars 2, well he asked for McQueen's other movie, other movies are what he calls sequels, but for the first time in 8 months or so he didn't ask for Planes to be his first movie!!!) started again Levi watched a few minutes and then Dr. V came in to talk to us. We talked about Levi's numbers and how he has been doing. Then we talked about his allergic reaction to the last plasma and what that means. We discussed some possible other options, but nothing that we are really wanting to move to yet. Then we talked about the clinical trial that we are trying to get Levi in to. The company is very interested in Levi but not sure if he will be accepted because of his young age. The company was out last week to see the facilities and meet the doctors. So that is the first step in getting approved! We are still quite a ways out from the next round of trial even happening, but knowing that we are on the short list for it is huge!

Once Dr. V left the plasma got started. When Nurse T and Nurse K came in to get it started they have to do their checks and double checks, reading his bracelet and the plasma bag and the order and both signing off that everything matches. It takes a few minutes to get going. Well after about 30 seconds of this process, Levi had had enough of his movie being blocked by them and he looked right at Nurse T and said "T I can't see McQueen!!" It was quite another round of giggles for all!

Plasma started.

After the plasma had been going for a few minutes Levi started to tell us that he was tired and needed to take a nap. So we go him a pillow and a blanket and turned the lights down. Don't let this adorable picture fool you,he never actually slept. But doesn't he look cute pretending to sleep, including pretending to snore!

Since we weren't actually sleeping we kept sitting up and tossing himself around and somewhat watching his movie. We made it about half way through Cars 2 before Levi asked for "McQueen's real movie" I switched it over to cars which he watched. We never watched Planes! First infusion in FOREVER that Planes wasn't watched!

 After lunch Levi had had enough of sitting in the chair and asked to go to the play room. Since he was being very good we decided to make that happen for him. He is getting better about understanding his line and pole. Not great, but better! As long as there is two of us we will venture into the play room. One adult is on pole duty and the other is on Levi duty. It's tiring, but fun at the same time.

Levi gave me and the baby several check ups to make sure we were ok! 

 Finally his infusion was over and it was time to head back to the room to get de-accessed. Here is Super Levi riding on his pole back to our room!

 Levi's counts today were 220. So a great number for an infusion day! An infusion should bump him much higher so it's great to know he is already starting high. Once everything was done, Levi got his 5 minutes to play in the playroom without a pole and then we were headed home. Levi was over tired at this point and struggling, but didn't actually want to fall asleep. So he fell asleep with 22 miles of the 96 mile drive left!

 Once we got home I knew that he needed more sleep, so Levi and I decided to cuddle on the couch. Sometimes a boy and his Mom just need cuddle time. We both slept for about 2 hours!

Next steps, blood work on Thursday. If all continues to go well his next infusion will be on Valentine's Day.