March 28 - Pediatrician Appointment

March 28 - Pediatrician Appointment

Last week I had scheduled an appointment for Levi to see Dr. S about a few concerns and that appointment was today. Jay was going to meet us at the office. We happened to be at the same light together (lucky timing). Jay was coming straight through and we were waiting to turn right. Levi saw Daddy's car go by and waved like crazy. Then he yelled "Daddy Follow Car Follow Daddy" and we made our way down the hill to Daddy. He was sooo happy!

We got to the office 1 minute past our appointment time and went right in to register. We set down to wait and Levi did a good job waiting again. This time he had his apple (I make him leave breakfast in the car at the lab) so he was pretty happy.

We didn't have a long wait before they called us back. Levi did weight and temp and blood pressure just fine (as usual). Levi was 31 pounds today with everything but his sneakers on.

We settled in to wait for Dr. S. Levi requested a book so I was reading to him when she got there. We discussed Levi for a few minutes and then settled in to the two concerns. Levi's reflux has gotten really bad again so we are going to go back on twice daily meds instead of just "when needed". We are hoping to get it under control before it is bothering him instead of reacting once we notice it. Levi's rash on his legs just wont go away either. It gets better and then it gets worse, I just can't seem to get it under control. Dr. S touched his legs and noticed how bad it felt even though it wasn't as red today. She wants us to switch up his soap and to try a new lotion on it, and then we will reevaluate at his 2 year (oh god, that's not far away) check up. We caught her up some on what was gong on, she gets all of the reports on Levi from Dr. V but being able to talk to her was good. It's very strange for her to kinda seem out of the loop on what is going on with him as she has always been our first contact before all this USS stuff.

We headed out and Levi got to pick a sticker. They had Doc McStuffins so he was super excited! We headed out and it had started raining. So it was a quick good bye and he was off with Daddy back to daycare.

Hopefully these things will help him be more comfortable. I hate seeing him reflux 10+ times a night, he is just miserable. He has learned that Milk will help him, and will yell for Milk when it's getting bad. Even in his bed at night where he knows he isn't supposed to have a drink he will yell for milk, and sure enough we go in and he is having hiccups and major reflux. And the old lotion we were using on his legs just wasn't cutting it anymore. It had gotten to the point where we would put it on and he would start screaming because it stung so bad. Hopefully this new stuff will be better then that. Levi goes through so much, I don't want to put him through anything more if we don't have to.

We had to run errands at night, so Levi got to be a king!!

King Levi!

March 28 - Blood Work

March 28 - Blood Work

Happy Monday!!! Levi has an appointment with Dr. S (his pediatrician) this morning after blood work so Levi and I slept in, and for once Levi actually slept in when Mommy wanted him to. He ended up sleeping until 8:30! And I think would have slept longer, but I tried to creep down the stairs and that bugger of a top stair squeaked, I held my breath, but it didn't matter, the little sound of "Mommy!" could be heard from Levi's room. In the end it was probably a good thing as we needed to be on the road anyways.

The Easter Bunny brought Levi a Marshall back pack to be used for daycare, and Levi was very excited to wear it. I've been told that these pictures will "Break a Fella's Heart" with how big he is getting, you've been pre-warned. :)

My Kitty! My Marshall! I have it!!

All ready! Waiting for Mommy to be ready to go!

We headed to the hospital to see nice nurse. Levi was so excited to see her that he didn't want to wait, and started heading right in the lab door as soon as we got there. I had to tell him that there were people ahead of us, and that we needed to wait our turn. It only went so well. He pouted a little, and yelled for "Nice Nurse". He kept saying "Nice Nurse Morning" and "Good Morning" and "Hi!". The poor guy who was getting his blood drawn through all of this could not have been too impressed as Nice Nurse was responding to Levi, but he smiled at Levi when he walked out.

Levi did a great job waiting!

It was finally our turn and Levi went right it and opened up the band-aid cupboard. He picked up the Sponge Bob box and said "Monster! I want Monster!" I said ok, as long as it's a monster then we can have that. Sponge Bob is not a show that we will more then likely ever allow in our house, so I didn't want him knowing who it was. He ended up getting the octopus guy (I don't even know the show to know what his name is). He kept saying, "Monster! Spider Monster!" The blood draw went as awesome as always! Levi scurried over to the treasure box and picked out the orange maraca to go with his green one.

I looked at the clock and realized we were going to be late. I scooped up Levi and headed out the door, he said "See you Thursday" to the Nice Nurse and we were gone. I rushed to the parking garage only to be greeted by this:

Really?! Really?! Learn to park! I have to put a kid in the back seat of that car!! After getting him in on the passenger side, I squeezed myself in to my door and we were off. There were 6 empty parking spots beside me on the right, you couldn't have taken one of those with your giant car you don't know how to drive?!?! I was sooo frustrated.

The call hadn't come in with Levi's numbers by 3:50 and Jay and I were a little frustrated/miffed by that. So Jay drew the short stick (or I gave him the "I'm so cute" face and he folded) and called up Dr. V's office. He got Receptionist S as usual with her lovely attitude. He was able to talk to K who gave him Levi's counts as 292. So the drop has started. That's not a huge drop from Thursday, but looking at the trends it's coming. Any drop just starts us on a downward spiral. :( K was not impressed that we had done blood work this morning. Apparently she was unaware of the once a week, once a week, twice a week schedule, and was irritated that we had done blood work what she considered "off schedule". I don't understand her attitude. And really what the problem is, it really can't take that long to get the fax of results, enter it in his chart, and give us a phone call, less then 10 minutes I would think. And yet you would think she was moving Earth itself. It's probably a good thing Jay called, because I am at the end of my rope with people who don't understand what we go through, and she might have gotten a piece of my mind.

We shall see what Thursday brings for a drop.

March 24 - Blood Work

March 24 - Blood Work

Today's blood draw went great as always! Levi is really getting the hang of this. As a parent that continues to be a bitter sweet thing. Levi's band-aid pick today was candy again. He sure does love that candy! :) From the treasure box he picked a pencil and Nice Nurse insisted that he also take a pad of paper so that he could color! It was cute. She sure does Love the little guy. :)

Today at daycare is purple day. Can you believe that my son owns NO purple clothes. I love purple!! But last night when we went searching there was nothing in his closet or the laundry. So off to Wal-Mart went went. We found a pair of Pink and Purple puppy PJ's and he was super excited about them. They weren't footy or zip up, so I told him that he could make it pass as an outfit today.

Purple outfit at daycare. 

Numbers came back a little after noon and his count is 329!!! We haven't seen a number that high since he was in the hospital in the middle of January and received 3 transfusions back to back! That is GREAT!! We are definitely very happy!!

March 17 - Blood Work

March 17 - Blood Work

Happy St. Patrick's Day!!

I went into this blood work a little more on edge for the numbers then I do for some. We were all a little concerned that his numbers might have continued to fall some even with the infusion, as they have in the past, and any lower then 83 and we would be getting into the dangerous zone.

Levi was not up and moving very quickly this morning. But once I got him up and going he was in a very good mood. We headed out and got down to the lab. There was one person in front of us so we settled down for a short wait. Settled down is a very lose term. We were a little crazy man. But we managed to stay in the chair the whole time even if not always sitting down in it. Thank goodness for the stars game, I just wish that it locked the home button on my phone.

Best picture I could get of Mister Wiggle Worm

When it was our turn we headed in and saw Nice Nurse. Levi ran right to the band-aid cupboard to pick out his band-aid. He has gotten adventurous lately and we ended up with a Hulk band-aid. He wanted spider man who was on the box, but there wasn't any left. I didn't even know that he knew who spider man was!

Nice Nurse had a student observing her today. The student was very nice, but very quiet. Nice Nurse did her normal job of getting Levi's blood on the first shot and super quick. I don't have to hold his shoulders or other arm at all anymore. Just have to hold the arm that is getting stuck otherwise he flinches a lot. As soon as it was done, Levi wiggled down to go get a prize. Today he picked 2 multi-color koosh balls. Normally I would have made him pick one and put the other back, but those balls have been in there forever, so I thought it would be fine. He gave Nice Nurse her high five and ran out the door, yelling back "See you next Thursday"! We had a stop at the fountain (sometimes called a mountain now) and then headed to the car. He spotted the donuts again, and ran to them saying "sprinkles" but when I said "not today" he didn't even say anything, just kept walking to the door. :) My big boy!

Snack in the car! 

We got to daycare and Levi said bye bye to me and went off to play with his friends.

Around 12:00 the call came in from K, Levi's numbers were at 222! YAY!! The infusion did it's job! We are golden until next Thursday's blood draw!! :)

March 15 - Infusion #6

March 15 - Infusion #6

This morning started out as a fairly normal morning. Levi actually slept in at David's House, and we had to wake him up! He was a little cranky, but not too bad. We put the numbing cream on his port and made sure to layer it on pretty thick, of course in the 2 seconds between putting down the cream container and picking up the plastic band-aid cover Levi decided to stick his fingers in it. Take 2 went much better and we got the cover on.

We drove across the street to the hospital and got checked in. We walked out back and saw that they too were doing construction. Uh Oh, the play room is completely closed. This could end up being a VERY long day! The had pulled a few things out and so Levi was playing in the cozy coupes and running around the halls.

Drive Drive!

We did the first of 4 vital checks, and Levi was such a big boy. He set in the chair all by himself!! This is the first time he hasn't set in Mommy's lap! Piglet came along too! And notice the socks have Marshall on them! (That was the compromise I could find, since I refuse to pay $20 for 6 pairs of socks just so he can get the Everest socks).

First Vitals Check

Next it was time to meet with Dr. V. Levi took his gold fish with him, but he set still while Dr. V checked him out. He did tell him that his stethoscope was "Coldy cold!" He wasn't too impressed about having his pants pulled up so Dr. V could check for bruising.

Dr. V examining Levi

I stayed in and talked to Dr. V for a few minutes while Levi went back to play. I learned that he went to RPI too!! YAY!! We also talked about some medications that might come available for Levi, however they are realistically still 10 years out as they are still in clinical trials, and are not approved for kids at all yet, and would also need approval to be used for off label use. But at least there is something out there. The medications would not remove the need for plasma infusions, but they should help to spread the infusions out.

Then it was time for Levi's port to be accessed. Nurse T came in to do the access. For the first time ever Levi set in Daddy's lap! (He is growing up so much this trip!) The port access went well until it was time to get blood out. Like usual, the port flushes great, but it just doesn't want to give blood. We did our normal dance (arms up, turn head, lay down, etc) and finally got enough for the platelet count to be run by the lab. We think that the line in his vein must be running right along the side of the vein since his are so tiny, and that it gets suctioned to the edge of the vein when he is in certain positions and we are trying to pull out, but that anything going in is fine.

Getting the port all clean for access. 

Blood draw dance! 

The plasma was ready early! So we got the infusion started right away after set 2 of vitals.

Infusion started

Daddy headed down to get breakfast. The nurses came in at the 10 minute mark for the third set of vitals. Levi was watching Inside Out and was very unimpressed that the nurses wanted to stand in front of him to check that everything was working right, because they were blocking his view. There was also a minor incident of falling out of the chair, I think someone is slowing learning that standing in chairs just doesn't end well. Finally it was food time!

Eating breakfast and watching Inside Out.

Nurse T came back in with the platelet count result. 83! Umm.. What?!?! 83! It was 188 23 hours earlier. Thank goodness we made the call we made to come for an infusion, I can only imagine how low it would have been by Thursday. I think we would have found ourselves admitted on an emergency basis! And that's scary! And dangerous for Levi! Dr. V came back in and had his look of defeat that I have only seen on him two other times. He is such a strong doctor and knowledgeable and when he has that look I know we are back at square one with figuring things out. He agreed with us that there was no indicators that it had dropped that low. He has no bruising, no cold, no nothing! It's frustrating!

Daddy headed to get our stuff from David's House and get us checked out and Levi and I settled in for some TV and Potty time. His watch went off every hour, and he did GREAT! He would hang right on to his pole and push it to the bathroom, go potty, and then push it back!

Laying down to watch TV.

Cuddling with Monkey and watching some Doc McStuffins

Nearing the end of the infusion Levi was getting restless so we settled down with some books.

Putting the band-aids in his new book from his Aunt's Friend Mandy and her son Jaxon. Thanks! He loves it!

And then we let him play with the iPad to keep him entertained. He is doing really well with the disney puzzles.

Puzzle time

Because his numbers were so low we gave him the entire bag of plasma instead of just 200mL, so he got 216mL. The infusion took a little longer because of this, but was well worth it!

The infusion was finally done! We packed up our room. Waved goodbye to Dr. V and Nurse T and headed out! Levi wanted to ride the elevators so we did! Then we settled in for the long ride. We were headed to Laconia on the way home to play at the Condo. I think Levi was overly excited because he stayed awake for WAY too much of the drive.

Still awake! Go to sleep!

After about 45 minutes Levi finally fell asleep in the car!

Sound asleep. Piglet getting a cuddle.

Another successful infusion behind us. Lets see how long this one lasts, and hope that blood work on Thursday shows a big increase!

Second Trip To David's House

I am currently writing this blog post while laying on the floor outside of the Dino room listening to Levi yell "I'm Stuck", "Levi Stuck" and "Drum Ditty". He is so tired but he just won't give in. He is really starting to hate pack and plays but he just isn't ready for a cot yet, since he still sleeps in a crib at home and just doesn't know what a bed is that doens't have sides. And there is no way I am ready to move him out of his crib yet. It is very nice to have him contained while he sleeps, and to still have his angel monitor.

I picked Levi up from daycare and got him in the car. I asked if he wanted to go stay at David's House tonight and play in their huge play room. He looked right at me and said, "No, Charlie Brown's House". The things that little boys say. We headed home to finish packing, pick up Daddy, and head out.

The drive was long as always. Made even longer by the weather. The weather was all rain until about 40 minutes from Lebanon when it started to switch over. About the last 20 minutes of our drive got pretty darn snotty. 89 was down to 45 miles an hour and it was icy and slushy. But we made it.

Got to David's House and got checked in. We were told the house is at full capacity tonight, so I am glad we called early this morning and were able to get a room. We filled out the paper work and found out we were once again in the Dino room. Levi picked a stuffed animal this time and picked out a purple beanie baby named "Dreamer". We headed up to our room and the room looked totally different then just two weeks ago. The wall hanging was gone, the night stand and chair, the curtains were down, the dinosaur stuffed animals were missing, it was like a whole new room. As we were walking around the house we saw lots of other changes as well. It seems they are doing some remodeling and touch ups. Paint jobs and such. So that is pretty cool.

Levi and I headed down to the play room while Jay dealt with the fact that the room had a cot set up in it instead of a pack and play. We had asked the guy at check in what was in the room for Levi and when we asked about a pack and play it seemed like we were talking Latin, I don't think he knew what a pack and play was. Jay got it situated and came down to play with us. We played for about an hour before heading upstairs for dessert. This time there was a sign saying there was taco stuff in the fridge (we had stopped at McDonald's on the way up since it was later) and there were two kinds of cupcakes on the counter.

Levi and Daddy watching the clock sing.

After cupcakes we headed upstairs for bedtime stories (we had brought our own this time) and PJ's. Bed went about as well as could be expected and he was asleep by 9:45 (somewhere in the middle of me typing this post). Between the time change and the place change his sleep schedule is all screwed up.

Jay and I headed downstairs for a few minutes of adult time before calling it a night. Tomorrow is another busy day which starts pretty early in the morning. Gotta be up around 6:50 to get dressed, do Levi's numbing cream, pack up breakfast, and be over to the hospital for a 7:30 appointment.

Good night all!!

March 14 - Blood Draw

March 14 - Blood Draw

Today's Blood draw went about as well as always. Due to the time change we were all a little out of sorts this morning so I let Levi sleep in until about 8:10. So we got to the lab a little later then normal. A lady was just checking in when we got there so we had to wait for her to go before it was our turn. Levi did a pretty good job sitting in the chair and waiting. He was a little antsy but not too bad. When it was our turn we headed in and Levi went to pick out his band-aid. He picked a Candy Crush band-aid and was super excited that he had a "Poke Poke" band-aid as that is what he says when he wants to play candy crush on one of our phones. The draw went about as well as possible. A quick and easy draw and we were off to the treasure box. He picked a green and orange hand clapper and we were back out to the fountain before you could even stop and think.

We headed to daycare and Levi was very upset because we couldn't call daddy. My phone wouldn't connect to my car and he didn't understand. We got to daycare and went straight to the potty. Then I spent some time helping Miss T with a computer issue before heading to my car to head to work.

Taking care of "his baby" at daycare!

I got in my car and I had a missed call from Dr. V's office. Uh-Oh that's not a good sign. To have a call at 10am and a call on my cell phone. (If they are just reporting a good number they only call our primary phone on the account which is our house phone. And K calls.) I started listening to the message, It was Dr. V himself, uh-oh another not great sign. Levi's count was 188. Not a horrible number but a pretty decent fall since Thursday. Also with history we know that once he starts to fall, the slope of the fall only gets steeper and steeper. I headed to Seneca so that I could talk to Jay before calling Dr. V back. Jay and I talked about it and felt the best course of action would be to head to Lebanon for an infusion tomorrow because waiting until Thursday to do numbers again was just going to be very stressful.

Jay and I conference called with Dr. V and he was in agreement with us. That it wasn't worth the risk to wait and the smartest plan was just to head to Lebanon for an infusion tomorrow.We were able to get the 7:30 slot again and were able to get a room in David's House so we settled back in to finish the work day as normal knowing that our night was going to be much different then planned.

Our crazy little cutie!

March 10 - Blood Draw

March 10 - Blood Draw

Today's blood draw went great as usual! We got to the hospital and as soon as we walked in the front door Levi said "fountain" and started pulling me towards it. We watched the fountain for a minute when Levi's potty watch went off, so we were off to find a potty! After a successful trip we headed to the lab. Nice Nurse was there and we had a short conversation before heading in. Levi picked out his band-aid again and this time picked a giraffe, monkey, jungle theme thing. Was an interesting choice. Up he jumped into his seat and he held his arm out. He squirmed a little more then normal today, but nothing bad, and Nice Nurse did her normal amazing job getting his vein the first time. He could barely wait for her to put the band-aid on before he wiggled his way out of my lap and was off to the treasure box. He was looking through the box when she pulled out the new stuff and started putting it in. He grabbed a green maraca an was out the door before I could get the treasure box closed and follow him. He came back to give Nice Nurse her high five. And we were off, playing our maraca and singing our way out. A stop at the fountain and then we headed out.

Playing at Rumble Tumble on Sunday with his cousins.

Nice Nurse and I had a little conversation about the treasure box as she was adding the new things. I said, "remember when we first started coming here and the treasure box was filled with fish bath toys and rubber duckies" she said "yup" and I said "those are quiet!" I thought she was gonna lose it she laughed so much!

He was so excited that the sandbox was open again!

The "garage tunnel" aka Parking garage was fairly empty and since it was a nice day out we didn't have to rush rush rush to get into the car, so Levi discovered that the tunnel makes an echo. He definitely tried it out for quite a while. Was neat to see his little brain trying to take in everything that was happening and what he was doing with his mouth and then hearing with his ears.

All he kept asking for was "in pool", he even brought us his water wings, so we finally put him "on pool" to show him that it was frozen still. 

We headed to daycare with a stop at Dunkin Donuts on the way. It was Miss T's birthday and we wanted to surprise her with donuts and coffee!

Eating a lollipop on the way to voting on Tuesday.

Results came in around 12:45. Levi's count has dropped to 232. An 18 point drop since a week ago. Without having the blood draw on Monday we don't know if it went up more then 250 and has had a larger dropped, or if it plateaued there and has just slightly dropped. We are going to watch him closely this weekend as last time when he was at 237 he dropped to 180 in just 3 days and then 153 in less then 24 hours. Unsure what will happen this time. We will redo labs on Monday. Levi also has a slight cold (sore throat, runny nose, sneezing) and that wont help his numbers at all either. Currently we are scheduled for his next infusion on the 22nd, it will be interesting to see if we make it to that date or not.

Note: Labs were so quick today that there was no time for pictures. So all pictures are from the week!

March 3 - Blood Work

March 3 - Blood Work

Today is Levi's Blood Drive at Erskine, and it's Levi's day to give some blood to. It seems fitting that so many people are giving blood for him and others who need it, and he is getting poked today to. :)

One of the toughest things about going back to regular labs and doctors after being at the CHaD is reminding Levi that he needs to sit and wait like a big boy. At the CHaD every office has a play room and toys and games and they want the kids to run around and play. Also every adult there has a sick child so we all understand the need for kids to run and play and be a little louder. Today we are back at the regular lab, so we fell right back into Levi needing to sit and wait. He didn't do awful, but didn't do great either.

He climbed up in the chair ok.

He wanted mommy to sit next to him so was trying to clear out the chair for me.

Nice nurse was there today! :) And the draw went super well as always! He got to pick out his own band-aid today and he picked Jake and the Never Land pirates. After he got his band-aid he jumped down to pick from the treasure box, and picked a yellow whistle quite quickly (which is nice, we have been having issues with picking and indecision lately). But now thinking back, I am not sure that whistle ever made it to the car, not sure what happened to it. hmm...

After we put his coat on, Levi wanted to look at the fountain again, and for the first time ever, he saw that the hospital has a little bakery on the other side of the entrance from the lab. He looked at me with those cute eyes and said "Levi Donut Please", well this mom caved right there and over we went to the donuts. He found that they had a chocolate one with green and white sprinkles and asked for that one. We bought it and headed to the car.

Levi and his donut. 

He ate the donut the whole way to daycare and had a blast. But this is how I dropped Levi off at daycare. Oops. Sorry Miss T! Thanks for cleaning him up.

Donuts are yummy!

Funny daycare story: Levi took his jacket off and you could see his band-aid. His friend pointed to the band-aid and said "Jake, Jake, me have Jake too" and pulled down their pants to show Levi that their pull-ups had Jake on them. Levi's friend kept yelling "Look Levi Look, Jake" and pointing to their pull-ups! It was adorable. I couldn't help myself I cracked up at that one.

Just got Levi's counts in. 250 today! :) That's great! Up almost 100 points (count, numbers, not really sure what to call it, so will probably stick with points) from his infusion day count of 153. Next blood draw will be on 3/10.

Blood Drive in Honor of Levi

There will be a blood drive tomorrow at the high school I attended in China Maine. If you are able to donate please do!! Please call the Red Cross today to get an appointment.

If China is too far of a drive for you we are hoping to do one in Farmington in the next month or so. And you can always donate anywhere you live!

Thank you all!!!