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!!!