June 16 - Blood Work

June 16 - Blood Work

This morning was a pretty good morning for Levi. He woke up on the happy side of the bed and was very cuddly. He helped pick out his clothes and we got dressed and headed downstairs. Daddy had packed breakfast so that always makes the morning go a little smoother. We were on the road early and on our way!

Levi had picked out band-aids at Wal-mart to take to Nice Nurse and was super excited to give them to her. When we got to the hospital he was very excited to see that his fountain was "On" too! So we went running to see it!

Torn between the band-aids and the fountain!

Trying to open the princesses while we waited. 

We got over to the lab and Levi was super excited to give Nice Nurse the band-aids, but she wasn't there! :( We settled down in a chair to do some waiting. We were first in line when she got back! Even Nice Nurse's need a potty break!

A little light reading!

While we were waiting another couple came over from registration and put there name on the list under Levi's. They were very verbal about their annoyance with having to wait and this "little brat who cut the line". I wanted to punch them! First of all my child isn't a brat! He is sitting in his chair, being perfectly well behaved reading a magazine. And second of all he didn't cut the line, we were here first! I understand that it can seem like we don't have to wait as much since we don't register, but seriously if that's the perk he gets for blood work twice a week then so be it!

Nice Nurse came back and was so excited to see Levi! And Levi was excited to see her. He jumped out of his seat to head in. I told him he had to wait until she called us, which he did. Then once she told him to come in he grabbed his boxes of band-aids and went running in to give them to her. He was so proud of himself! And she was so excited. We put the boxes in the cupboard and Levi picked out what he wanted. He picked a turtle, and this time I found one that was the turtle and not just words! He got the red turtle and that made him happy!

As Nice Nurse was doing his paperwork, the male part of the couple came up to the window and again said "we were here before him, I don't understand why he is going first". She looked at them and then looked at her sign in sheet, and just nicely said "He's signed in first, so I will be with you shortly!" He started to argue with her, and she just said "did you register?" and when he said "yes" she said, "ok i'll be with you shortly". He walked off at that point and you could hear the two of them complaining in the waiting room, and thankfully we couldn't hear the words, because I am sure they are not things I would want my two year old to hear!

Nice Nurse came over and was happy to see Levi but you could clearly see she was annoyed with the guy and a little frazzled. She missed his vein! Not something that happens often. At this point I really wanted to slug the guy! She wiggled it a few times and got it going. Levi never even made a peep! Thank goodness!

When the blood work was done, Levi hoped down and ran over to the treasure box. He picked a rubber ducky (that's right! They are back!!!) Then he gave Nice Nurse a high five and a hug! And you could see that she was happy and out we went. He was yelling back as he usually does "bye P! See ya Later P" (He has learned her first name now and calls her that interchangeably with Nice Nurse. I was thanking her and walking out. I gave the couple sitting there one of those overly nice smiles that basically is a little passive aggressive attitude!

Levi had run to his fountain. He was standing there looking at it, when he said "potty! have to go potty" so i started rushing him there. We made it, and he went pee on the potty!! As we were leaving the bathroom he said "donut" and I said sure! So we headed to wait in line. The nurses also waiting in line were very friendly with him. I didn't think we stopped for donuts that often but the lady who works at the cafe knows him by name, so maybe I stop a little too often! She made him tell her what he wanted, and he did. "chocolate donut with sprinkles please"!! Sorry Miss T I know you love it when I drop off like this.

At 3:50 when I still hadn't gotten Levi's numbers I called. Receptionist S did immediately put me thru to K with only a small amount of attitude. K was polite but definitely a little attitudy. Saying multiple times, "It's in the pile, I just hadn't had a chance to call you yet". Levis numbers came back at 296. So a great number!

Next Plans: Blood work again next week!

June 9 - Blood Work

June 9 - Blood Work

Levi was up fairly early and ready to head to blood work. He was pretty excited to see Nice Nurse and to go in Mommy's New car. We had a little debate about the DVD player. Levi doesn't quite understand yet that he only gets movies for long drives, but we listened to music and had breakfast so that was good.

We got to the hospital and Levi remembered that the fountain had been off the last time we were there. As soon as we walked in the front door he looked up and saw that it was on, and said "Someone turned it on!!!' and ran over to look at it. Without any prompting he stopped looking after a few seconds and said "go see Nice Nurse" and off he took.

Nice Nurse was very happy to see us. There was no line no waiting so we headed right in. Levi picked out his band-aid. He picked a candy band-aid and climbed up in the chair to open it. Nice Nurse came over after finishing the paperwork and give him a high five. She said, "I was going to take today off, but then I remembered that my buddy was coming today and there was no way I was missing seeing Levi!" He looked pretty happy.

The blood draw went well. As soon as he had his band-aid on he was off and running to the treasure box. He picked a blue kaleidoscope. It's so fun to watch him look through it. He says "Let's Look" and closes his eye and puts it up to his eye or nose or forehead. It's very cute to watch and he gets so excited!

Levi hugged Nice Nurse and she was just beaming. We definitely made her day!! Then we were off to visit the fountain again before heading to the car and driving to daycare.

Numbers came back around 3:00 at 265! So the infusion did what it needed to do.

No time for pictures today, so here is one of him eating his lollipop after his hair cut.

Next steps: Blood work again on Thursday 6/16. This is the easy part of the month so no real stress!

June 7 - Infusion #10

June 7 - Infusion #10

We got over to the hospital and got checked in. Levi walked out back and greeted Nurse K and Nurse T with a big "Hi!" We got settled into the jungle room and Levi was excited to start playing. Nurse A was ready for us do vital checks though, so we had to do work first. Levi wanted nothing to do with Vital checks today. He did height and weight great, and temp was good too. But blood pressure and O2 was a nightmare. He would not sit still and just wanted to rip off the cuff and sensor. We finally got values that seemed mostly accurate and we let it go. Levi was off and running to the play room, Which was finally done!!!

I love that they give the kids actual medical supplies to play with. It makes what they are going through less scary when they can put it into their play. Levi took the baby dolls blood several times, always making sure to "Coldy cold" and "softy soft" (aka rub the alcohol pad on and then dry with a cotton ball).

Dr. V came in to talk to us about everything. The biggest discussion was that once again Levi's numbers fell low on Thursday and then spiked back up on Monday before his appointment. It's very strange that that happens and none of us are sure why. He looked at Levi's legs, which are covered in bruises. He seemed a little concerned by it, but not overly so. He listened to Levi and asked him how he was feeling. I like that even though Levi is only 2 the doctors and nurses listen to him. They may look to us for confirmation and more in depth questions, but they listen to what he has to say as well. Dr. V also notices the small details. He noticed that Levi's toe nails were no longer yellow and were now pink. It's just nice to know that even though we only see him every 3 weeks Dr. V really cares about Levi!

Next it was time to access Levi's port and get a blood sample. We headed back to our room and Nurse K was ready for the access. The access went great as per usual now! She put a little extra padding on over the tap and a stronger bandage to make sure that Levi definitely couldn't pull it out. She let Levi help flush his port, he pushed on the syringe! She also let him help draw the blood out. Levi got very excited by this.

Then it was time to administer the Benadryl. This is my least favorite part of the new system. Levi does not do well with the Benadryl and it's just not fun! The beginning of it is fine, it's after about 25 minutes Levi gets MAD! Like physically angry and somewhat violent/aggressive. Not my favorite thing! Levi still wanted to play so we took his pole to the play room. He did fairly well with this. Not great, but he is only 2, but for the most part he stayed close to it. He likes to push it.

The nurses are so adaptable! Nurse K was willing to start his Benadryl while we were in the play room and Nurse T switched it from Benadryl to Saline in the hall way while we were walking around in the wagon. They are so great!

Then his red bag came up from the lab and it was time to get settled in the room. This is also the point that Levi starts to get super angry, as its been about 25 minutes since the Benadryl. Levi would not settle in his room no matter what we did. Jay had found The Good Dinosaur to watch, but Levi was just screaming and screaming that he wanted Planes and wouldn't settle for anything else. Jay had attempted to find it but was unsuccessful. Levi was sitting in my lap and just thrashing and thrashing. He head butted me harder then he has in a long time and just was overly angry. Nurse T then found Planes and Levi's world was better. We put the movie on and got his plasma started. We were starting at the 75mL/hr and then would be upping it to 100mL/hr as long as the 15 minute check went well. Levi was receiving A+ plasma, a different type then he has ever received so we were all hoping that things would go smoothly. At the 15 minute check things were good and Levi had settled down and was watching planes so we upped the plasma. It wasn't much longer then that that both Levi and I fell asleep.

It was some nice Mommy and Levi cuddles! Planes ended and that woke me up with the repetitive credits music. I opened my eyes and realized that Jay was gone. I moved slightly and that woke Levi up. :( A few minutes later Jay showed up with lunch. At first Levi wanted nothing to do with lunch, he just kept curling around in my lap for cuddles. He was definitely still tired. But eventually he wanted lunch and he enjoyed his hot dog and fruit. His infusion was getting to the point of being done and Levi wanted the chair to himself, so we let him have it.

Finally the infusion was done and we took the access to his port out and started to clean up to head out. Nurse K let Levi help again and that made him super happy! Dr. V came in to talk to us about the next plans. We would be back in 3 weeks unless something changed. Levi's count for today was 237.

We said goodbye to everyone and headed home. Levi slept in the car for about 20 minutes (if that) and watched a movie the rest of the time.

June 6-7 David's House

June 6-7 - David's House

Another three weeks has gone by! Time seems to go so quickly between these infusions. We picked Levi up from daycare and told him that we were headed to David's House! He got sooo excited! He loves going there to play. He had received a car DVD player for his birthday and we had set it up since he had last been in my car, so he had never seen it. As soon as he got in he looked at it and said "Turn it on for me Daddy"! I was surprised he knew what it was. He picked to watch Sesame Street and we started the drive to Lebanon. After a few minutes of driving he yells out "my own like Kennedy Kyle". He was very excited that he now has a DVD player in the car! Jay and I are also very relieved to have the player (Thanks Mom and Dad!!!). The drive was one of the easiest we have ever had which was so nice! It is so hard to have a stressful drive after a long work day. And its tough for Levi too, so having something for him to watch is great!

We stopped at Burger King on the way. At first Levi was excited to stop. But then when we got inside he was very upset. I asked him what was wrong and he said "Don't want Dinner anymore. Go to David's House". I promised him that we were still on the way to David's House but that we needed dinner. He asked for a burger for dinner, which he ended up eating part of and then stealing my hot dog. After dinner we got back in the car and finished the drive. Levi switched to Curious George and we were back on our way.

We got to David's House and got checked in. We had gotten the last available room so weren't sure what room we would be in. We were in the lion room. It's a great room!! It's huge! Had both a full bed and twin bed in it as well as room for Levi's pack and play! The room over looked the playground so Levi was excited about that.

We had barely been in the room 1 minute when Levi was dragging us out to the playground. Levi played outside for about an 30 minutes. Then he wanted to play inside. He loves the slide! He also has quite the ritual with the play ice cream. We all have our specific cones and icecream flavors that we get each time and Levi brings them to us. It's adorable. At 8:40ish it was time for last snack and drink. Since David's House was busy both of the big tables were full and the high chairs were either occupied or blocked. We put Levi in a booster at the alcove table. That lasted about 30 seconds before he wanted to just sit on the bench. He did a great job just sitting. He wanted a drink and I had left his sippy cup in the car, so I got him a small paper cup to drink from and he did amazing with it!!!

Big Boy Cup!

Then it was time for bed. Levi is doing much better going to sleep in the pack and plays at David's House. He was quiet after only a couple minutes, and asleep after about 15. Not bad at all. Jay and I did our traditional hang out in the hallway until he fell asleep, and then we went downstairs for a little bit of adult time before heading to bed.

Night all!!

The next morning Levi was up bright and early! Not sure why he has determined that like 6 am is the right time to get up at David's House, but it is the new normal. Levi and I headed down to the play room so he could get some energy out. We played on the plane and with the food. We also played with a car underneath the bench and with the blocks. I gave Levi a lego car and he immediately said "needs blocks" and headed over to the right bin to get the blocks out and build the car up. He was a little upset that the slide room was still closed. I told him that it was too early and that no one was up to open it yet, but he didn't seem to understand that.

After 45 minutes of playing we headed upstairs to get some breakfast. Levi had a fruit pouch, some oranges,and a little bit of oatmeal. It was all going well until he decided that dumping the orange juice over his head was a good idea. It was all good though.

Then it was time to head upstairs and wake up Daddy and get dressed. We put Levi's cream on and got him dressed. Then it was time to check out and head over to the hospital. We were heading over about 45 minutes before our appointment time but Nurse K and Nurse T had both said that was fine since no matter how many times we talk to her Receptionist S is bound and determined to not give us the 7:30 time slot.

June 6 - Blood Work

June 6 - Blood Work

We normally wouldn't do blood work today as Levi has an infusion tomorrow, but since his counts were so low on Thursday, and his poor legs are quite bruised we decided that more information is always better then less.

The weekend had been much less stressful then I expected it to be. Although I kept a very close eye on Levi and any changes he had or any complaints he made I was able to relax and play with him too. Saturday was his birthday party and Sunday we went to Story Land for the first time of the season. Both things were fun!!

The boys at Levi's birthday party!

Levi on the elephant at Story Land. 

The morning was it's normal hectic Monday morning. Levi climbed in our bed for a few minutes for snuggles, so that was nice! Then our day got started. The drive was a little crazy down to the lab, but we made it.

We got there and Levi immediately ran over to the fountain as per usual. But, there was a big difference! The fountain was off!! There was water in the bottom, but it wasn't running. Levi was very disappointed.

We headed in to see Nice Nurse. Levi picked a "turtle" band-aid. He climbed up in the chair and asked me to open it. I opened it and it was just the logo (which is just words) not any of the turtles. I thought we were going to have a melt down right there in the chair, He kept yelling "No turtle, just words" and his little pouty lip came out. But I got him calmed down and explained that it was their symbol and that probably they were hiding behind the words, and he got excited and was happy! Oh the lies of a parent.

The blood draw went great as always, and he was off and running to the treasure box. He picked out Yellow and Pink clappy hands and we were back out to the fountain to see if it was "filling". It wasn't!

Rough morning. No fountain and crummy band-aid!

The drive to daycare was uneventful thankfully! On my drive back to work David's House called and we got the last available room of the night! The house is packed!!

The call came in from Dr. V around 10:30. Levi's count had gone up on it's own and was now at 205. The plan was still to venture out to Lebanon tonight for an infusion tomorrow. The unpredictability of all of this is the most nerve wracking. Never knowing if we are up or down, never knowing when to worry and when not, having to be on constant alert. It's exhausting.

June 2 - Blood Draw

June 2 - Blood Draw

This morning was a fairly typical morning for blood work. Run around like crazy trying to get everything done, and then breath on the 25 minute drive to the lab. Levi was a good boy!

As soon as we got there he wanted to run in and see his fountain!

Then over to see Nice Nurse. The blood draw went very well! No complaints on his side. Levi picked a Hello Kitty band-aid. He didn't have a clue who Hello Kitty was, but he was excited that she had a pink bow in her hair. I honestly can't remember what he picked from the treasure box. But we were off and running out the door as soon as we gave high fives.

The drive to daycare was uneventful and the morning was over.

Around 10:00 I got a call from Dr. V's office on my cell phone. That's not a good sign. They usually call the house phone. I can't answer my cell phone at work, so I waited for the voicemail to come in and then I listened to that. Levi's count was 169!!! Umm... WHAT?!?! That's not good. How did it drop so much? Why did it drop so much? Jay called Dr. V back and they had a discussion about it. The decision was made to wait until Tuesday for an infusion as was our scheduled plan. But we are to call if there is any changes over the weekend or we notice any signs of low platelets (bruising, headaches, wobbley, spacey, etc). I wasn't crazy happy with that plan, but I accepted it, and geared myself up for a long weekend of worrying about him and watching his every move!!

May 27 - Happy Birthday Levi!

Happy Birthday Levi!!! 

I can't believe you are 2 years old!!!

I can't believe that Levi Turned 2 today!!! My baby is growing up!!

Here is a look back at the last 2 years!

From 1 day old to 1 year old to 2 years old!!!

He has changed to much!!! 

I love you Levi!!!

For his second birthday we might have gone a little overboard. But he loves it!!! Here is Levi's brand new playhouse!!!

May 26 - Blood Work

May 26 - Blood Work

Today is an interesting day for our family. Levi's Birthday is on the 27th, but Cupids day is on the 26th. So its a rough day, but gearing up for an awesome day. We decided to take this morning as a family day.

We all headed to blood work. There was a person in front of us so we had to sit and wait our turn. Levi played with Glowy and waited on Daddy's lap.

Selfie Time. 

Playing with Glowy!

When it was finally Levi's turn he ran in like usual. He grabbed a bright pink band-aid and climbed up in his chair. The blood draw went as awesome as usual. Nice Nurse sure does do a good job with him. When the draw was done he took off like a shot over to the treasure box. Nice Nurse let him pick from the "special box" (aka the new stuff she hasn't put in the treasure box yet). He picked a green whistle. 

Our family tradition on May 26th is to take a new glowy up to the NICU. So we all headed up there to do that. Levi gave it a little kiss on his nosey and said "Bye Glowy" He was a little confused why it wasn't for him, but some day he will understand.

Then we headed off to a nice family Breakfast at Friendly's. Cupid said that Levi could have ice cream for breakfast dessert, and boy did he like it! 

Then it was off to daycare! 

Levi's numbers came back at 265! So a great number!! 

Plan: Blood work again on 6/2! 

May 23 - 2 year Well Kids Visit

May 23 - 2 year Well Kids Visit

2 years?!?! What!! No Way is my baby 2 years old!!! This is my baby!!!

He is getting so big!!!

His 2 year well kids visit was pretty tame, nothing really new. Levi goes to so many appointments that his height and weight are tracked all the time. He got his last immunization until he goes to school! And we talked to Dr. S about a few concerns we/daycare have. But we aren't really worried about any of them, just brought them up. So really just another appointment.

Humor of the appointment: The nurse isn't used to patients at 2 years old that can stand to have their height done, so she laid him down on the table and attempted to use the lay down mat. She was all happy that Levi laid still and proudly said "What a big boy, he's 36.5 inches tall". Jay and I laughed!! Umm... At his infusion on Tuesday he was 34.25 inches tall. So he grew 2.25 inches in a week!! Wow! We got them to redo it with him standing up and he was he expected 34.25 inches.

Like Father Like Son:

May 19 - Blood Work and Falling Down

May 19 - Blood Work and Falling Down

This morning was quite the morning. The morning started with Levi falling down on the one stair between our living room and kitchen. Not an uncommon thing, but what was uncommon was that he didn't get back up and he asked for a boo-boo bear, and actually put it on his leg. A few minutes later he got up but was walking a little funny on his leg. But after a minute or two he seemed fine and was running around again. So Levi and I finished getting ready and headed to blood work. We got there and there was a line ahead of us, so for the first time in a long time we had to sit and wait.

A little frustrated that it was "Other People's Turns" He has kinda come to feeling like he owns the place! 

A selfie will always put a smile on his face though!

Checking out a magazine. 

When it was finally his turn, he went running into the lab for his band-aid like normal and flat out fell again, a complete wipe out over air. He immediately started screaming. I grabbed him and asked if he was ok, he said "yea" so I tried to set him down so he could walk in to get his band-aid and he just screamed again. So I carried him into the band-aid cupboard and again tried to set him down and he screamed. So we picked out a band-aid (a nice bright orange one) and got in the chair.

The blood draw went ok. Part of the way through the purple tube the blood just stopped coming, but with a little needle tweak it started again! When the draw was over he didn't move. I helped him get off my lap, and he crumpled to the ground and cried. I told him to go pick out his prize from the treasure box and he just said "no treasure, i don't want treasure". At this point I was starting to get nervous that he had actually hurt something. I carried him over to the treasure box and he happily picked out a prize. He picked a bottle of bubbles; a choice he has wanted to make for several months now and I've told him that he has to wait until its nice enough outside to use them. I carried him out of the lap and he wanted to see his fountain, but he wouldn't stand at it. Notice in the below pictures that he is on his knees with his bubbles.

Fountain

Fountain on his knees.

I picked him back up and headed to the car. I took his shoe off and tried to look at everything. Nothing looked funny. He would let me move his ankle and knee without saying anything. We got to the car and I tried to stand him up in the car and he just crumpled onto the seat. :( I asked him what was wrong, and he said "my knee hurts". I called Jay for parenting reinforcement on what to do and we both agreed that he should probably be seen. So I called Dr. S's office and they had an opening at 10:30 so I took it.

Levi and I ran over to my office for a few minutes to fill my boss in on what was going on. Then we had a little over an hour to kill so we went and got breakfast at Friendly's. Levi was very good and ate lots.

Being Silly.

Eating.

We got over to Dr. S's office and filled the nurse in on what was going on. Dr. S came in and took his shoes off and immediately said "oh yea, that's swollen", I looked down and sure enough it was. I should have taken both of his shoes off and compared them. Parenting fail number who knows, I lost track a long time ago. He wanted to get down at this point from my lap, so we let him get down. He hobbled for a second and then crawled around on the floor. She wanted to see if he would try to run on it if we let him, so out into the hall we went and got him excited to see if he would run, and sure enough he sorta would. He was definitely limping but would sorta run on it. She got him to show her where it hurt (little bugger wouldn't do that for me) and he pointed to a spot on his foot. When she tried to push on it there, he cried. She asked him multiple times at different points where it hurt and he would always point to the same place. So she was a little nervous that possibly he had fractured it. She was feeling positive about the fact that he would put weight on it some, but was still nervous due to the swelling and localized pain. So we got a lab slip and over to the hospital we went. Dr S gave Levi a Pooh book!! That made him excited. And he got to pick from the treasure chest and picked a yellow bendy guy.

We loaded back into the car and headed over to the satellite hospital office (there facility is generally faster). Levi was very very done at this point. He wanted nothing to do with doctors anymore. We got registered and settled down to wait our turn, there was just the person in getting x-rays done ahead of us.

Being a goof ball while waiting.

The x-rays went HORRIBLE!! The tech did not know how to deal with kids at all! I finally got the pictures taken by basically strong holding Levi down and letting him cry. I was holding him so much there is actually my hand in one of the pictures. Levi and I got to go see the pictures, and there were no obvious breaks, but they had to be read by a specialist to make sure that there wasn't a smaller hair line fracture.

Levi and I headed home. We sang and giggled a lot in order to keep him awake. Once we got home we went straight up to nap time.

This was about 2 minutes after I laid him down!! He was out cold! Poor thing!! 

What a Morning!! Not at all what I expected the day to be!!

Around 1:00 I received the call from K. Levi's counts for the day were 235! So at least that wasn't a concern.

Around 2:00 I received the call from Dr. S's office. No Break!! Just need to ice it several times for the next few days and watch him around it especially if he continues to complain.