Wednesday, April 19, 2017

A Day in the Life of a Thal Kid!

I decided that instead of the normal monthly post for Mia this month I would do a "Day in the Life" post for her! When we started this Thalassemia journey we didn't really know much about it at all. I wish I could see a post like this to ease my nerves and in the long run make things easier for me as a mom and Josh as a dad to understand. Most days Mia is just like any other kiddo, but then there's days like today, blood day, that are HARD.

Before blood day or "refill day" as we have named it can even begin, we have to have labs drawn. Usually the Saturday before blood day we drive up to Children's Hospital, which is an  hour from our home, and have her labs done. They usually draw 8-10 vials of blood. Lots of different tests have to be run in order to keep her healthy and to be sure they have the exact blood they need to give her the following Tuesday.

This brings us to today! We aren't allowed to take pictures so there aren't many to post! That means, I only broke the rules one time today!

We need to be at Children's by 8 am so we left our house at 6:30. We wanted to get to the hospital a few minutes early so we could stop by the café for a muffin! :) We ended up getting caught in rain and then lots of stop and go traffic on the interstate so we didn't arrive until about 7:50. Just enough time to get our muffin! Right at 8 we checked in to our clinic. We soon were called back for a weight, height, temp and blood pressure check. We also filled out what she wanted to eat for breakfast and lunch. We made our way to the room where we will spend the day! We were the first to arrive today so Mia had her pick of what seat she wanted!

About 8:30 the nurse accessed her port. This is not fun but it's a sure fire stick every time.

At 9:00 our nurse practitioner came to see us! We LOVE Ms. Kristen! She talked with Mia about the zoo and listened to her heart. We talked about Mia's ferritin levels coming down from 1600 to 1200 in just the few short weeks she has been on Jadenu! HUGE PRAISE! She told me Mia's blood levels were lower than last time so she will need a 5 hour transfusion(250ml, I believe) today. Boo.

9:30- BREAKFAST TIME! Today Mia is having grits with NOTHING on them, scrambled eggs, a banana(her jam) and yogurt.

Right now it's 10:10 am and we are waiting on the blood bank to call and say they have her blood ready!

10:15-Blood bank just called and blood is almost done so Mia just had a dose of Tylenol and Benadryl to help her not have a reaction to the blood! Let's get this party started!

10:30-Dr. B just came by for a visit. She is Mia's hematologist! We LOVE her also! She is wonderful! She told me not to get excited about the Jadenu doing such a wonderful job just yet! :)

10:40-Our first bag of blood has arrived and we just got it started! Mia will be closely monitored throughout the day by several people to be sure she's ok!

Some people have asked what we do all day while the blood is going in. Mia has a tv with on demand movies and also cable. She watches tv, we have coloring books and crayons that we bring and of course LOTS of snacks! There's also a closet full of stuff she can play with...play doh, Mr.  Potato Head, etc.

11:40- We're an hour into our five hour transfusion! Things are good so far! Other than the blood bank measured her blood wrong and she's almost fished with her first bag already...I'm not sure what this is going to mean yet...

11:50-Lunch is here and my girl is happy! Grilled cheese, French fries, fresh fruit cup and a veggie cup! The blood bank split the blood twice(should have been once), so we are waiting on the next bag.

1:00-We are on our final bag of blood! It will take a few hours for it so go in. Currently Mia is mad at me because I won't let her play in her leftover lunch. Trying to bribe her with snacks to get her to stop screaming. Cookies for the win! It's whatever it takes on these days, whatever makes her happy pretty much goes. Except for playing in food.

1:15- Just kidding, NOW we are on our final bag of blood. Should be about 2 more hours!

2:45- Can it take ANY longer? We are both bored to tears. Need coffee.

3:00- Our clinic room has 5 chairs. All of our friends have come and gone for the day. First to get here, last to leave. Poor Mia!

3:12-now she falls asleep. When we are almost done. haha!

4:00-FINALLY done and headed home!

We got home a little after 5, then it was dinner, baths and bed! :)

Wednesday, April 12, 2017

Piggie Probs

A few months ago our Tucker passed away. It was sudden. We didn't know anything was wrong. We still don't know what happened. I debated on whether or not I wanted another pig for a while. Then a friend posted some babies for sale on FB and well, I couldn't resist!

I put the deposit down and told her I wanted a female. No reason, just to be different I guess. The piggie was ready just before we left for Disney but they said they would keep her for me until we returned. The day after we got home I worked it out so that we could pick up the piggie! We were going to name her Minnie Pearl! :) Well, piggie was pretty upset when we got it so it rode in my lap all the way home. When we got there I put it down in the living room so we could pet it and immediately noticed that IT WAS A BOY! haha! SO, meet Romeo! :)

He's cute, right?! Yea, well, he's BUCK WILD. Like, I haven't touched him since putting him in the pen WEEKS ago. He will NOT come near any of us. :( 

In the effort to not miss Tucker, this made it worse. I miss him wanting a scratch on the back and him scratching his booty on the fence post. :(

I guess I'll just keep trying with little Romeo. 

Tuesday, April 11, 2017

Zoo Atlanta

A few weekends ago I turned 35! (eekk!!) I wanted to do something fun so we drove up to Atlanta to visit the zoo! Really, I just wanted to see the Panda Bears. We went all the way to China and didn't get to see any and as it turns out, there's a mama bear, daddy bear and twin baby bears a few hours away! :)

I'm fully aware that we never stay home for more than five minutes. China, Disney, Atlanta and the beach several times in between. It's go, go, go all the time for us! That's how we like it! :)




Thursday, April 6, 2017

Lost in Disney

I think I'm finally brave enough to talk about Brooks getting lost while we were in Disney World. If you know me in real life then you know what a Mama Bear I am. You don't mess with my babies, my world revolves around them and Josh. I'm sweet as can be until something happens with one of them, then you better watch out. Even my kids will say, "Here comes Mama Bear, you better watch out!" haha! I'm constantly counting them when we are in public for fear of losing one of them. ALL that to say, please no negative comments. They won't be published and I've beat myself up PLENTY for this already.

The Sunday we were in Disney we went to Hollywood Studios. We stayed at the park for a while and then went to our resort to rest and planned to go back later in the day. We stayed at the Art of Animation resort. There are several buildings that make up the resort. Our room was in the Lion King area. We decided to take Brooks over to the Cars area because they had all the cars from the movie there and knew he would love to see them! After staying in the area for a while Josh ran back to our room for something and I took the kids to the playground.

This is not my picture but I wanted you to be able to see what I am talking about. Notice how the area is round, the benches are around the outside. You see how you would not be able to see your kids playing on it? We walked up and I told the kids to play and that I would be sitting right there on a certain bench watching.


Reece came to me a few minutes later with huge eyes saying, "I can't find Brooks!" At first I didn't panic, you can't see every spot at once so he could have been playing. I walked around a few times and didn't see him. My heart started beating fast and I saw some other parents and asked for their help. All the little kids playing stopped and asked his name and they ALL started looking for him. I had taken a picture of him that morning so everyone knew exactly what he looked like and what he had on! VERY important to ALWAYS do this!! One of the other moms left to get security as we all screamed his name over and over.

He was no where to be found.

About that time Josh returned from the room. I explained that we couldn't find him so he started to look. I was losing my marbles. I felt like the world was spinning around me and I was just there. AWFUL FEELING. I was shaking and crying and the other moms just put their arms around me, a stranger, and told me it was going to be ok, we were going to find him. I closed my eyes and just prayed.

About 30 minutes went by before security came to me. I feel like this was WAY WAY WAY too long. Maybe they were looking for him the whole time? I don't know but there should have been contact made with me or my husband IMMEDIATELY! They didn't know what he looked like so how did they even know who they were looking for?

Finally, a lady with security came riding up on a bike. She asked to see his picture. As she was looking at it I heard over her radio, "WE FOUND THE CHILD!!" As much as it was music to my ears I didn't believe them. So I asked her where he was. She told me to go to the front of the pool, so the other mom's walked me up there.(Seriously, us women stick together. They didn't even know me but were in this until we found him! I would have done the same!) As we were walking, my sister met up with us(she had been looking for him too). We rounded the corner of the pool and I saw Brooks with the sweetest lady! I basically threw Mia at Allison and RAN to Brooks! I cried and cried and cried, the lady that found him cried and cried and cried!

The lady that found him said she saw him walking by himself and knew something wasn't right. She had her little girl with her, it was her 5th birthday! She knelt down and asked Brooks where his mommy was. He told her he didn't know and he was looking for me! She told him she was going to stay with him until they found me. I'm SO THANKFUL for her! (We are now friends on FB!)

Brooks came off of a slide on the opposite side of the playground I was sitting. He looked up and saw an empty bench and thought I left. :( So, he went looking for me.

Oh, my heart. I've never been so relieved in my life.

This was shortly after we got back to our room after the whole ordeal was over. I held onto him all night. And the rest of the time we were there. And, who am I kidding, I'm still holding him! haha!