Monkey and Piglet 2.0

This week I was "that mom". The mom I said I would never be. But things have changed and I will do whatever it takes to make Levi happy! And through it all, I learned how much Levi and I are truly loved by so many people and how there are still amazing people out there.

To explain we will have to go back about 2 years:
While pregnant you begin to discuss what you do and do not want to do as parents. Many of these things go out the window early on, but some of them stick around. One of Jay and my big things was that we were not going to allow Levi to get attached to any particular stuffed animals or blankets or what ever. He would have no "lovies". We travel too much, are on the road too often, to have to worry about that. And for the most part we succeeded. We change out his stuffed animal at daycare about every 2-3 weeks (or as I remember). He sleeps with different stuffies in his bed, he picks different ones to travel with, he has multiple blankets and is fine with whatever one is in his bed. However there are these 2 guys; piglet and monkey. He loves the things. He always wants them in bed and gets super excited about them. Now he can and will go to sleep without them, we have traveled without them, and he does just fine. When we do travel with them we often get home close to bed time and so they are still packed away in the car at bed time and he does fine. But he does love them, and he uses them as a soothing element when he has them. Poor piglets ears and monkeys hands, they are usually soaked with slober from being sucked on.

For some reason on January 12th when we were headed to his appointment in Lebanon I grabbed them and threw them in the diaper bag (he had no idea). I am not exactly sure what made me grab them. We were running late (as usual) and I was running around like crazy, but something in me said "grab piglet and monkey" so I skooted in his room, grabbed them, and shoved them in the bag before running out the door. They ended up being a godsend! As they were trying to get an IV in him and having next to no luck I pulled them out of the bag to surprise him. The little bit of comfort from home made his day. His eyes lit up huge and he reached for them and clung to them like they were his last lifeline.

As the day became night and then days in the hospital it became very clear that this little comfort from home was making him more relaxed. He was able to fall asleep easier, naps were better, it was just that little comfort. And that's when my resolve went away. Levi needed to have piglet and monkey!

So I began thinking that we needed a second set. We clearly don't always have notice for when we will be in the hospital so we need to pack a hospital bag and leave it in the car. And this bag needs to include Monkey and Piglet 2.0. They need to be exact to his, and he will never know (until he is older) that there are second ones. he will just think that mommy works miracles and they are somehow always with us in the hospital and then always with us back in his crib at home. Easy peasy I thought, Piglet is from the Disney Store and Monkey is from Carters, I'll just go online, order up a new set and life will be good. Well life apparently isn't that easy, and this is where i became "that mom".

Piglet's Story: Piglet joined our family quite by mistake/partial necessity. It was Cyber Monday 2014, My disney store cart needed $4 to qualify for free shipping, and it would save me about $15 in shipping costs, so made sense to find something for $4. Well what should pop up in the sales, but a stuffed piglet. Sure I said and added it to the cart. When it came in the mail I very unceremoniously handed it over to Levi, who fell in love! Reordering Piglet was quite easy. I found my e-receipt from 2014, grabbed the code, went over to the Disney Store website, threw in the code, hit add to cart, and paid for it. Now mind you paid more then triple what i paid on Cyber Monday, but whatever, I was being that mom. Piglet came in the mail in a big shiny disney box.

Monkey's Story: Monkey joined our family before any of us knew Levi's name. At the time we were all calling him BB (Baby Boy). We had just told my sister and niece's and nephew that Levi was indeed a boy, Grammie and Grampa were there too, though we had told them he was a boy the week previously, so we went shopping. My oldest niece was excited to buy him things, and so were Grammie and Grampa (although we had gone to Babies R Us the night we had told them to shop for boy things). We went to the Carter's outlet and everyone loaded up on things for BB. We are so blessed by family. At the counter while checking out, my dad saw this stuffed pirate monkey. I love monkey's, my bathroom is monkey's, my dishes are monkey's, I have just always loved Monkey's, so Grampa bought it for BB. Grammie sorta gave him the little eye roll of "he's not even born and you are already buying him stuffies" but they were all getting whatever they wanted for BB so along came Monkey. Fast Forward to when Levi was about 7-8 months old and we were starting to let him sleep with stuffies. Piglet was on hiatus (remember the whole swapping out of stuffed animals thing that we were sticking too) so I grabbed monkey off the shelf and handed it to him! He has loved it ever since. Very short time after Piglet and Monkey became a duo. Where one goes, the other goes, they are never alone! It's ok to not have either, but if you have one you better have them both. I assumed finding Monkey would be as easy as piglet. I went to the Carters website put in pirate monkey plush and hit enter, expecting him to pop right up, but he didn't. Ok, don't panic, try other search results. I continued searching and searching. 30 minutes later I finally found him on the carter's website!! YAY... uh oh... he's there, but with big text "No longer sold. Discontinued in 2014". UGH!!! Ok, no biggie i'll pop on over to eBay, someone has got to have one. And sure enough there was one out there, for $30 plus shipping for a used stuffed animal. Ok, not quite "that mom" yet, keep searching. I searched for a week, nothing popped up. I finally became desperate and decided to put out a plea to the J14 moms. We all have kids born at about the same time, maybe someone got one at a baby shower or something and there kid doesn't play with it. I posted out there, and the girls immediately started responding, but none of them had one. But since they all love Levi they started posting to their pages asking for help and to their local mom swap pages. Still no hits. That night, I started doing the same. And finally we got a hit!! Monkey 2.0!! :)
Within hours our plea for a monkey went across the country. The J14 moms were posting it everywhere. And they were telling me that their friends who were seeing it were posting it too. I had never felt so heartfelt love through all of this. I just kept thinking I am being "that mom" the desperate mom to replace a stuffed animal, but everyone we talked to and everyone who heard our story was so understanding. They all felt bad for Levi and wanted to help him get his monkey in any way possible. For the first time through all of this happy tears came to my eyes. I was loved and so was Levi, by people who had never met him, and people who had. It takes a village to raise a child, and the village definitely came together to find a new monkey.

Monkey and Piglet 2.0 are now safely tucked inside our emergency hospital bag ready for our next journey to the CHaD. :)

January 28 - Blood Work

Levi did amazing at blood work today!! Not a single peep out of him. He set right down in the chair, held his little arm out for the "nice nurse" and let her stick him. I didn't even really have to hold him still at all. The only peep he even tried to make was when the second nurse decided to try to cover his eyes, he didn't like that, apparently he is like me and wants to watch what is going on.

Levi waiting like a big boy!

Numbers came back this morning at 359. So we are definitely trending down. If this continues at the same trend it looks like we will be doing plasma next week while we are in Lebanon. Which works right in to the 2-3 week cycles. So we shall see how it is next week.

For now Levi is being his normal happy little self. Maybe he will sleep later then 6:30 tomorrow, that'd be swell for Mommy and Daddy!!!

Hope you all had a great day!!

UPDATE: He didn't sleep later then 6:30... in fact he was up at 6:20! I don't know why I set an alarm clock this week, he's been awake before it every day!

It's a good thing he's cute!!

Watching Sophia this morning while I figured out what the plan was as we had no daycare last minute. 

January 25 - Blood Draw

This mornings blood draw didn't go quite as well as Thursday's, but still way better then can be expected from a 19 month old. Since we no longer have to register its just a quick walk into the lab. We put our name on the list and set down to wait. There was only one gentlemen in front of us, so I was looking forward to a short and easy wait. A grandmother, mother, and young girl (4ish) came over from registration and were clearly annoyed, saying quite loudly "I don't understand how some people don't have to register and can cut the line for the lab". I wanted to look at her and say "Thank your lucky stars you aren't here with your child twice a week. If not having to wait for registration is a "perk" he gets, then so be it", but I didn't, I held my tongue. The little girl was allowed to run around in the waiting room, something we do not allow Levi to do, he gave me a few looks and definitely wanted to go join, but I would simply say to him, sit down on your bum like a big boy, and he would sit right back down in the chair. I am so proud of my little guy!!

Being a big boy and sitting in his chair waiting at the lab.

We went in to do blood work and the nurses were quick and efficient, just like last time. We try to make things not so scary and overwhelming for Levi, so on Monday and Thursday mornings we tell Levi we are going to see the "nice nurse" on the way to daycare. He has learned this and will tell us at home, "visit nice nurse?". Today before she drew his blood she was finishing prepping everything and he looks at her and goes "Nice Nurse!!". We all got a good chuckle out of that. The blood draw was quick and he had his minion band-aid and was off to pick a treasure from the treasure chest. Today he picked a blue bath fish to match his purple one from Thursday!!

I got the call around 11:45, Levi's platelets are at 528 today!! Still very good. Lower then Thursday, but still amazing!! :)

Upcoming Plan: Next blood draw is Thursday. Then next week we will be heading to the CHaD for Clinic to see Dr. V. He wants to access Levi's port and see how that goes. If that goes well, then we will begin the process of getting a home nurse for blood draws instead of going to the lab and having to poke the vein in his arm. (The home nurse can access his port, where as a lab tech can not). If that doesn't go well we will continue lab draws and go back a week later to attempt a port draw again.
We have also submitted all of the paperwork to be included in the USS Registry, this is the current research being completed. They will run genetic testing on Levi, Jay, and I for research purposes and will gather all sorts of information to hopefully help us all, and all the other families out there.

January 22 - Blood Draw

I was very worried about this morning's blood draw. By the end of the hospital stay Levi wanted nothing to do with nurses or anyone touching him. He would freak out if a doctor or nurse even walked in the room. I informed the lab tech of this while checking in, and she did AMAZING with Levi. She was quick and efficient, had everything laid out, talked to him, made it fun for him, and even had a minion band aid for when it was done. He never even cried. Was a little upset but no crying. When it was done they let him pick from the treasure chest. He picked a purple bath tub fish. Overall a great lab experience.

Waiting at the lab. 

And to top it off his numbers are 671! No plasma infusion today! We are good to go until Monday. :)

Hospital Stay 1 - Day 5

January 16, 2016 - Day 5

We are going home today!!!

Dr. V came in this morning and told us that his numbers were up and we were good to go home. He had slept all night and the surgery area looked fine. :)

We waited for breakfast and for the nurses to come in to take out his IV and line into the port. Once those were out we were free to go home. Levi walked himself out! Proud and happy to be free. :)

Of course it was snowing, but we didn't care. Took it nice and slow and made it home without an issue. Stopping for Slushies and chicken nuggets for lunch.

On our way home!!!

Once we got home Levi was very happy to see all of his toys and to play. He hit a wall around 2pm and we put him down for his regular nap.

We went out for celebratory ice cream after dinner at Friendlys!

It sure is nice to be home!!! :)

Current Plans:
We are going to do blood work every Thursday and Monday to keep a very close eye on his levels. Currently his port can not be accessed so those are still vein draws. If his platelet count drops below 150 we will be back in Lebanon for Plasma infusions. We are trying to determine a regular schedule for infusions, but need to see what his highs and lows are in the mean time. We are hoping infusions can be every 3 weeks, but they may need to be more often then that. At this point it is still a giant wait and see game!