December 8 - Blood Work
For the first time ever I didn't take Levi to blood work. I have bronchitis and didn't think that going to the hospital lab was a good idea (nor did I go to work!) So Jay took Levi. I was told the blood draw went well, but he will have to do the write up!
The results came in fairly early with a count of 255. We are finally starting to go back down with just 5 days until infusion, but it's still a pretty amazing count!! Definitely very happy!
Guest Write Up:
Sunday, December 11, 2016
December 1 - Blood Work
December 1 - Blood Work
Levi and I were running very late this morning getting out of the house. I am not feeling well and have spent 2 days this week at home so was getting every minute of sleep I could. Jay headed to work before Levi and I were up and moving so it was just Levi and I getting out of the house. I was so tired and not feeling great I didn't even have the energy to brush Levi's hair. So he looked a little crazy.
We got to the lab and I was hoping for a nice easy and quick in and out, but that was definitely not going to be the case. We walked in and the line was crazy! I have never seen that many people at the lab at once before. And to make matters even worse P wasn't their again today! Nurse Pa was there and I know that she can do Levi pretty well so was hoping it would go well.
Levi made friends in the waiting room and we talked to a little girl named Rachel who was there getting blood work for the first time since she was 6 (she couldn't have been more then like 8). She was very cute and Levi and her hit it off, it helped make the time go faster. She was very nervous and talked about how it was going to hurt. Levi told her that you get a prize from the treasure box after.
Finally it was our time to head inside. After what seemed like forever. We got inside and Pa was ready for Levi. He picked out his band-aid and we climbed up into the chair. She found the vein and stuck him right away, but he moved and she missed the vein. He didn't cry as she was wiggling it around. She decided to make the call to pull it out and try again. Never a call we like to make, but sometimes it's necessary. Levi was in a very cuddly mood so we decided to do it backwards. We have only done it that way a few times since he was little, but sometimes it's necessary. Levi curls up in my arms for a cuddle/hug and holds his arm out behind him. Only a pretty talented phlebotomist can do this as his arm is upside down, but Pa did it like a champ! One big hug and the blood was flowing out of his arm!
Levi was off and running to the treasure box before I could even blink. He quickly picked out a prize of stickers that had planes and hot air balloons and cars. Rachel was in the other chair as we were leaving. Levi gave her a big smile and told her to be brave! She smiled!
We headed out to the fountain to play for a second and put his jacket back on. Then I realized what time it was and determined that Levi would need a donut as there was no way he was making breakfast at school (in fact it was already over!) We headed over to the cafe. Levi went running to the case and saw that there was a sprinkle donut left. He was so excited. He kept telling me "there is one left, mommy, one sprinkle donut left!" We got in line behind about 4 other people. Levi did a good job waiting, but kept telling me "there's one left Mommy" and "I want a sprinkle donut mommy!" I kept telling him yes there is but that we had to wait our turn. We were almost at the front of the line, just one lady ahead of us. She ordered her water and then ordered a sprinkle donut. I was so frustrated. I was going to have to teach Levi that sometimes you don't get what you want, or others take it. Then she turned and got down on her knee and handed the donut to Levi! She told him to be good and have a nice day! I could have cried! It was so sweet of her!
Here is the post I put on Facebook. It explains my feelings so much better!
"To the lady who purchased this for Levi this morning, Thank you! You saw a sick and frazzled mom who didn't even have the energy to comb her kids crazy hair this morning, who had been sitting at the lab for 45 minutes with an energetic kid, who was running crazy late because she slept until Levi woke up instead of by alarm and then the normally dead lab had a HUGE line, who was in line to buy her kid a donut at 9:40 because he had long ago missed breakfast at school; but you didn't judge any of that, you looked at him and smiled, you got down on your knees to offer him the donut after you bought it, you told him to be good and have a great day! You brought me to tears! I am not gonna lie, the thoughts going through my head when you ordered the last sprinkle donut that my kid had just been talking about in line for the last 5 minutes, bouncing up and down and saying that there was one left, well those thoughts weren't nice. I was mentally preparing for the teachable moment with Levi about how sometimes what you want is gone and then where the closest Dunkin's was to get him another donut, but I didn't have to have that teachable moment, because you gave him an even better one, the moment of kindness of strangers! So Thank you!! You put a smile on my face and a tear in my eye!
I'm sorry that he didn't immediately say thank you, he didn't understand. You see, we get donuts more then I would like to admit after lab work, and he knows the routine, the lady who works behind the counter knows him by name now, and she knows what he wants, but she and I make him order it every time, make him say please and thank you. He knows he has to wait in line, and once you were moving out of the line he knew it was his turn, he wanted to get close to the counter, so he could order his donut. He did say thank you to you, and I saw the huge smile on your face. But I wish you could have heard what he said when we were walking to the car, once he really understood that the bag had a sprinkle donut in it and that it was for him, he said "she's nice!" and "Thank you!" with a huge smile on his face!
So Thank you! I will pay it forward!
:)"
Levi's labs came in fairly early. His counts are at 264! An amazing number! We haven't seen counts this high since the middle of September! It's so nice!
Levi and I were running very late this morning getting out of the house. I am not feeling well and have spent 2 days this week at home so was getting every minute of sleep I could. Jay headed to work before Levi and I were up and moving so it was just Levi and I getting out of the house. I was so tired and not feeling great I didn't even have the energy to brush Levi's hair. So he looked a little crazy.
We got to the lab and I was hoping for a nice easy and quick in and out, but that was definitely not going to be the case. We walked in and the line was crazy! I have never seen that many people at the lab at once before. And to make matters even worse P wasn't their again today! Nurse Pa was there and I know that she can do Levi pretty well so was hoping it would go well.
Levi made friends in the waiting room and we talked to a little girl named Rachel who was there getting blood work for the first time since she was 6 (she couldn't have been more then like 8). She was very cute and Levi and her hit it off, it helped make the time go faster. She was very nervous and talked about how it was going to hurt. Levi told her that you get a prize from the treasure box after.
Finally it was our time to head inside. After what seemed like forever. We got inside and Pa was ready for Levi. He picked out his band-aid and we climbed up into the chair. She found the vein and stuck him right away, but he moved and she missed the vein. He didn't cry as she was wiggling it around. She decided to make the call to pull it out and try again. Never a call we like to make, but sometimes it's necessary. Levi was in a very cuddly mood so we decided to do it backwards. We have only done it that way a few times since he was little, but sometimes it's necessary. Levi curls up in my arms for a cuddle/hug and holds his arm out behind him. Only a pretty talented phlebotomist can do this as his arm is upside down, but Pa did it like a champ! One big hug and the blood was flowing out of his arm!
Levi was off and running to the treasure box before I could even blink. He quickly picked out a prize of stickers that had planes and hot air balloons and cars. Rachel was in the other chair as we were leaving. Levi gave her a big smile and told her to be brave! She smiled!
We headed out to the fountain to play for a second and put his jacket back on. Then I realized what time it was and determined that Levi would need a donut as there was no way he was making breakfast at school (in fact it was already over!) We headed over to the cafe. Levi went running to the case and saw that there was a sprinkle donut left. He was so excited. He kept telling me "there is one left, mommy, one sprinkle donut left!" We got in line behind about 4 other people. Levi did a good job waiting, but kept telling me "there's one left Mommy" and "I want a sprinkle donut mommy!" I kept telling him yes there is but that we had to wait our turn. We were almost at the front of the line, just one lady ahead of us. She ordered her water and then ordered a sprinkle donut. I was so frustrated. I was going to have to teach Levi that sometimes you don't get what you want, or others take it. Then she turned and got down on her knee and handed the donut to Levi! She told him to be good and have a nice day! I could have cried! It was so sweet of her!
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| Eating his donut from "The Nice Lady!" |
"To the lady who purchased this for Levi this morning, Thank you! You saw a sick and frazzled mom who didn't even have the energy to comb her kids crazy hair this morning, who had been sitting at the lab for 45 minutes with an energetic kid, who was running crazy late because she slept until Levi woke up instead of by alarm and then the normally dead lab had a HUGE line, who was in line to buy her kid a donut at 9:40 because he had long ago missed breakfast at school; but you didn't judge any of that, you looked at him and smiled, you got down on your knees to offer him the donut after you bought it, you told him to be good and have a great day! You brought me to tears! I am not gonna lie, the thoughts going through my head when you ordered the last sprinkle donut that my kid had just been talking about in line for the last 5 minutes, bouncing up and down and saying that there was one left, well those thoughts weren't nice. I was mentally preparing for the teachable moment with Levi about how sometimes what you want is gone and then where the closest Dunkin's was to get him another donut, but I didn't have to have that teachable moment, because you gave him an even better one, the moment of kindness of strangers! So Thank you!! You put a smile on my face and a tear in my eye!
I'm sorry that he didn't immediately say thank you, he didn't understand. You see, we get donuts more then I would like to admit after lab work, and he knows the routine, the lady who works behind the counter knows him by name now, and she knows what he wants, but she and I make him order it every time, make him say please and thank you. He knows he has to wait in line, and once you were moving out of the line he knew it was his turn, he wanted to get close to the counter, so he could order his donut. He did say thank you to you, and I saw the huge smile on your face. But I wish you could have heard what he said when we were walking to the car, once he really understood that the bag had a sprinkle donut in it and that it was for him, he said "she's nice!" and "Thank you!" with a huge smile on his face!
So Thank you! I will pay it forward!
:)"Levi's labs came in fairly early. His counts are at 264! An amazing number! We haven't seen counts this high since the middle of September! It's so nice!
Saturday, December 10, 2016
November 23 - Blood Work
November 23 - Blood Work
Even though infusion was only yesterday we are doing blood work today since tomorrow is Thanksgiving and the lab will be closed. Last Thanksgiving we were facing a horrible stomach virus and counts that dropped so low our little boy was spotted. And at that point we didn't know what was going on. So going into this Thanksgiving knowing that we have good counts will be a great treat for everyone!
Nursery School closes at noon today so we decided to do blood work after school instead of in the morning. I dropped Levi off at school like every other day. At noon I picked him up and we headed for the lab. When we got their I saw that P was not their today. Uh oh! This could be a rough day! Nurse Pa was there instead and she is pretty good with Levi so I wasn't too worried. I was however a little stressed about the amount of people waiting in line! It was going to be a long wait. Levi settled in ok and had fun taking selfies and "reading" a magazine while he set on the floor.
Finally she called us and we headed in. Levi picked out his band-aid and we were sitting in the chair waiting for her to finish the paperwork when Levi had to go potty. We rushed right into the bathroom (thankfully there is one right in the lab). By the time we came out Pa was all ready for us! The blood draw went fairly well! And Levi was off and running to the treasure box before we knew it. Levi picked 3 cars from the box and we headed to the fountain to look at them. He wanted them open right away but I told him we had to wait until we got to the car. Once I said that he was ready to go!
Counts came in a little while later. His count came in at 249. A great increase in just about 24 hours! And an awesome number to head into Thanksgiving with! We wont be stressed this year at Thanksgiving which is so nice!
Happy Thanksgiving to all of you! Hope you have a great time with your families!!
Even though infusion was only yesterday we are doing blood work today since tomorrow is Thanksgiving and the lab will be closed. Last Thanksgiving we were facing a horrible stomach virus and counts that dropped so low our little boy was spotted. And at that point we didn't know what was going on. So going into this Thanksgiving knowing that we have good counts will be a great treat for everyone!
Nursery School closes at noon today so we decided to do blood work after school instead of in the morning. I dropped Levi off at school like every other day. At noon I picked him up and we headed for the lab. When we got their I saw that P was not their today. Uh oh! This could be a rough day! Nurse Pa was there instead and she is pretty good with Levi so I wasn't too worried. I was however a little stressed about the amount of people waiting in line! It was going to be a long wait. Levi settled in ok and had fun taking selfies and "reading" a magazine while he set on the floor.
Finally she called us and we headed in. Levi picked out his band-aid and we were sitting in the chair waiting for her to finish the paperwork when Levi had to go potty. We rushed right into the bathroom (thankfully there is one right in the lab). By the time we came out Pa was all ready for us! The blood draw went fairly well! And Levi was off and running to the treasure box before we knew it. Levi picked 3 cars from the box and we headed to the fountain to look at them. He wanted them open right away but I told him we had to wait until we got to the car. Once I said that he was ready to go!
Happy Thanksgiving to all of you! Hope you have a great time with your families!!
November 22 - Infusion #19
November 22 - Infusion #19
We got over to the hospital, found an awesome parking spot, and got checked in.
After we got checked in we headed out back and found Nurse A all ready for us. She helped Levi put his bracelet on, and had the "magic" scissors to cut off the tail.
We got over to the hospital, found an awesome parking spot, and got checked in.
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| Waiting in line at registration. Cranberry seems to be the one that always comes along now. |
Then it was time to do a little work! We headed into the little room for vital signs. Levi was a little wiggle worm so blood pressure took several attempts, and the O2 stat was definitely off, he didn't want to keep it on his finger at all. He also was being a bit of a goofball with his height measurement and every time she would just get it into place and go to look at the number he would rise up on his tippy toes and raise the number up on the wall and giggle!
As soon as vitals were done Nurse T was all ready for Levi to get accessed and start his Benadryl. The access went great.
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| Playing with the mask. |
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| Playing with the mask. |
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| Getting ready for access. |
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| Cleaning his port. |
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| Pushing fluids to make sure the port access was successful. |
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| Getting the Benadryl started. |
The benadryl went great as usual and before long we started the plasma. Levi played in the playroom with his IV pole. Today's pole was a different type then we usually have and it had a very low black handle. It did not have feet wide enough for Levi to ride on, but with the low handle he was able to push it fairly easily and did a great job getting to the play room and back and playing in their.
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| Taking the babies blood. |
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| Giving the baby an infusion. |
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| Sitting and playing. |
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| Pushing his pole. |
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| Running down the hallway with his pole. |
Dr. V came in to talk to Levi and see how things were going. We also talked about the fact that once a month Dr. V will be holding a clinic in Manchester and that they are training nurses there to be able to give plasma and other infusions. Although this wouldn't work out for us date wise often, the few times a year it does it would cut our drive in half! Which will be very nice. This should be up and running in the spring! Dr. V thought that Levi looked great with very little bruising.
The infusion itself went ok. Levi was very spacey and either set by himself or cuddled with daddy for most of the infusion. He didn't want to sit with Mommy. We watched planes and Inside Out. Our fairly standard movie choices. The infusion went so quickly that we didn't have time to eat lunch their we figured we would stop on the drive home. He ate plenty of snacks during the infusion.
Before we knew it the infusion was over! There was a little bit of stress at the end with a pull up that had moved out of place and a little pee on daddy's lap! But we got past it. As is the new tradition Levi went to play in the playroom once he was free!
Then we headed home. Levi fell asleep in the car so we didn't end up stopping for food. Once we got home, Daddy went to work and Levi and Mommy went to friendly's for icecream for lunch!!
Later that night I realized that we had never gotten Levi's count while we were at infusion. It couldn't have been low or we would have gotten it for sure. So I looked it up (I love D-H's online system!) and found out that Levi's count was 216! An amazing count! We haven't seen numbers like that in about a month and that was prior to infusion! So that is great.
Upcoming plan: Due to the holiday we will do infusion follow up blood work on Wednesday instead of Thursday. Then it will be weekly blood work until the next infusion on 12/13.
Saturday, December 3, 2016
November 21 - David's House
November 21 - David's House
I picked Levi up from Nursery School and he was super excited to be heading to David's House. He told all of his friends that were still there and all of his teachers. It's so cute how excited he is to go. We headed home, packed, and got on the road. The drive was our pretty standard two hour drive. We got there and got checked into the Lion room. We have only been in lion once before, it's a nice and huge room!
We headed down to the kitchen and found that there really wasn't any dinner tonight. :( We headed down to the playroom so that Levi would be entertained while we figured out what we were going to do for dinner.
We decided to order from "The Fort" and placed the order. Levi just kept telling us he wanted "nothing" so we picked for him. Jay and Levi stayed and played while I ran down the street to grab the food.
We set up in the icecream room with food and attempted to get Levi to eat. It was a lost cause! I had ordered him chicken nuggets and french fries and he barely touched them. I did finally get him to eat a yogurt tube, and about two fries.
After dinner we headed back downstairs for some more playing. We built towers at the bottom of the slide and then Levi knocked them over by sliding down the slide. He giggled and giggled and giggled. And thought it was the funniest thing ever.
Finally it was time for bed so we headed upstairs. It took Levi a little longer then normal to fall asleep, but the house was packed and several families were downstairs in the livingroom playing and talking loudly. He did eventually fall asleep.
In the morning Levi woke up fairly early. Levi climbed in our bed for a little bit and then we headed downstairs to play and have breakfast. Again I barely got him to eat anything, but he seemed happy this morning. We got dressed and headed over to the hospital.
As always, thank you David's House! You are our home away from home. :) We will see you again in three weeks!
I picked Levi up from Nursery School and he was super excited to be heading to David's House. He told all of his friends that were still there and all of his teachers. It's so cute how excited he is to go. We headed home, packed, and got on the road. The drive was our pretty standard two hour drive. We got there and got checked into the Lion room. We have only been in lion once before, it's a nice and huge room!
We headed down to the kitchen and found that there really wasn't any dinner tonight. :( We headed down to the playroom so that Levi would be entertained while we figured out what we were going to do for dinner.
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| He said he was mixing up some brownies |
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| Taking the baby shopping. |
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| More Shopping |
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| Coloring |
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| More coloring |
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| Playing with the new castle (that wasn't there the last time we were!) |
We decided to order from "The Fort" and placed the order. Levi just kept telling us he wanted "nothing" so we picked for him. Jay and Levi stayed and played while I ran down the street to grab the food.
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| I snuck this picture from outside when I got back with the food. Levi usually wont let Jay read to him, so it was nice to see them sitting and reading! |
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| Using a big boy cup! |
Finally it was time for bed so we headed upstairs. It took Levi a little longer then normal to fall asleep, but the house was packed and several families were downstairs in the livingroom playing and talking loudly. He did eventually fall asleep.
As always, thank you David's House! You are our home away from home. :) We will see you again in three weeks!
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