Mia's Blood Clot

Last week on Mia's "blood day" when they were accessing her port she complained that it was still hurting after they were finished putting the needle in the port. Her port is completely under the skin and so she still has to be stuck but she doesn't normally complain too much. I'm sure it hurts like heck but she tries her best to be tough about it. It shouldn't really cause pain after it's accessed but she's also three and a tiiiiiiiny bit dramatic so it's kind of hard to judge. Soon after we were walking to the restroom and I noticed her holding her shoulder and arm funny. I could see pain in her eyes so I knew something wasn't right. We also could not get a blood pressure in that arm. I talked with her nurse and she called the doctor who ordered an ultrasound.

We went ahead and continued with the blood transfusion first and once we were done we went for the ultrasound. I wasn't particularly worried until the ultrasound person(WHAT is the correct name...my mind is blank!)asked if we were leaving or staying.....of course I asked her what she could tell me...which was of course, nothing. But she said she wanted the radiologist to look at everything before we left. And she did and then they told us we were good to go. Well, ok. I should have gone back downstairs and asked her hematologist if everything was good but y'all I was so tired I didn't even think of that. It had been a LONG day of  little someone being hard to deal with. If ya know what I mean. haha! We had been there since 7:30am and it was about 4:00pm at this point.

So, we headed home.

 The next morning I had a doctor's appointment in Birmingham. Josh and I were leaving my office heading that way when my phone rang and it was Mia's doctor from Children's. When I answered she asked if they told me anything about the ultrasound and that Mia has a blood clot in her neck near the line for the port. WHAT? And then she said, "We need you to come today and get her prescriptions and for us to show you how to give shots."

I'm sorry, WHAT. NO.

We grabbed Mia from daycare and headed to my appointment and then straight to Children's Hospital to Mia's doctor. They filled us in on all the things and taught us how to give her the shot. She has to have them twice per day. Like I said, she's REAL tough but it sucks giving those to her! We also have to take her once a week to have her levels checked to be sure she's getting the correct dose. Which we are already having to go every three weeks so not that much more.

We need you all to be praying. We need this medication to work. We need the clot GONE. If it doesn't work the port has to come out. She NEEDS the port.

Meanwhile, we're giving her all the starbursts when she gets a shot!

Life Lately

I know I say this on here ALL.THE.TIME. but life is BUSY! We've all been sick with strep and or the stomach bug over the last month or so. I think we are all finally on the mend. Hubby was sick for almost two weeks and I can't handle life without him! It was tough! And I was lonely!

Before I even begin, yes I realize the big boys aren't in this post. #teenageboyprobs I'm going to do a better job of making them take more pictures! I did have this parenting win the other day...

Yep, and I meant it! Those fries were yummo! 

This guy right here...is the sweetest! He tells me I'm beautiful 100 times and day and that he loves me so much. He also massages my shoulders. He's the sweetest little man!

Reece recently celebrated the 100th day of this school year. The kids were supposed to dress like old people...this was as "old lady" as she got! haha!

I recently went on a field trip with Brooks! We went to Krispy Kreme and Pet Smart! It wasn't a trip that a parent was required to go on..and it wasn't a big deal. But, you know what? It WAS a big deal to him! We had the best time!

Little Miss Mia got her ears pierced last weekend! She had asked earlier in the week and I talked with her about it. Then, on Saturday she flat out asked if she could do it! Once she got Daddy's approval we had them pierced! She didn't even flinch when they did it. I knew she wouldn't. She gets poked with needles all the time so she's used to it. Sad, but true. She LOVES her ear rings! And I LOVE my girly girls!

We took this on blood day this week! Those three weeks in between transfusions sure fly by. We try to make the best of it. And, of course, we love to see our thal pals when we go!

We had a Valentine's lunch date! With five kids it's hard to find a date night! Lunch dates are our new thing! He also brought coffee and doughnuts to the office for us girls that morning! Husband of the year!

Reece had Grandparent's Day at school on Valentine's Day! She really enjoyed herself!!

Today marks the beginning of the Chinese New Year! Mia took red envelopes to her friends today with chocolate coins inside! We do our best to keep her in touch with her Chinese heritage! We'll be having a big Chinese feast at home tonight! :)

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! :)