Jaylie had an appointment yesterday to get a blood transfusion. We expected her platelets were low enough and thought her red blood cells would be too and they both were so she ended up getting platelets and blood. This was her first time getting platelets before. They were yellow which was a surprise to me. Jair again didn't seem to mind. She is usually fine as long as they give everything to her through her tubies which go into her port. She hates taking things by mouth or iv's in her arms etc. She is actually really good at taking her medicines now. She rarely complains about it which is nice. We were gone all day from 8:45 in the morning till almost 7 at night. It was a long day but she had fun. Her ANC was zero, which means she has no immune system so we have to be really careful. Hopefully it will go up in a few days. I will be doing lots of cleaning and sanitizing and laundry. Jaylie is feeling really good for having counts that low. Usually you would feel really tired and just crummy. She has had pretty good energy but tires early. She did wake up last night complaining about her legs hurting. They have hurt every round and that is how I usually tell she is at her lowest point. She took a bath in the middle of the night, that always seems to help. She took another one when she woke up this morning. She is doing good though considering. I'm so proud of how strong she is mentally. I love her so much.
Anyways, before she got hooked up we visited Briggs in the picu. Jaylie is so cute with him. Then we did crafts, games, Nintendo DS, and school work. We stayed busy. My mom and I took turns visiting Ryan and Briggs. Then we stopped by there on our way out and saw all 3 of them. Briggs is doing pretty good at the moment. His heart is just not working how it should still. They will have to do a balloon procedure to buy him more time. They will probably do it in 3-4 weeks. Then when he's around 6-8 months he will have to have another heart surgery, this time open heart in the middle of his chest to correct the artery and hole. So they will be in the hospital for a while unfortunately.
Jaylie has an MRI on Halloween day, which is this coming up Monday. So we have less than a week. We have to get there extremely early that day, but I guess that's good so we can be done. There's a Halloween party at the cancer clinic that day that we will go to and then well let them go trick or treating, so it should be a good day. Jaylie hates getting MRI's because of having to get an iv. They usually aren't comfortable using her port bc if risk of infection so they just do an iv. Jaylie is not happy when she wakes up and sees it. Hopefully she will do well. We have an appointment the following Thursday, the 3rd to go over the results. I am already nervous. Please keep all of us in your prayers, we appreciate it greatly.
Doing school work during her blood transfusion
Playing the game Guess Who with Nana. Its her favorite game to play.
Jaylie with Nana at her appointment on Thursday
Jaylie is so sweet and has really been into making everyone cards and presents lately. She makes bead necklaces and cards and then will get a gift bag and matching tissue paper and put it all together. She loves giving it to people! She made one for her nurse that she loves, her teacher and her Kindergarten teacher who she has never met. She made these two cards and leaves for her Oncologist and Nurse Practitioner. I thought they were pretty cute, she comes up with the wording all on her own.
These next ones are kinda random.
The girls with Hello Kitty suckers Dad got for them when he got home from work one night.
She has been into drawing people and putting their inital by them. This is our family. I love how she draws herself without hair most of the time.
Family movie night. The girls loved staying up to watch a movie :)
Crew playing on Jaylie's top bunk with her.
It was night time so its not a great picture, but I love both of their faces here.
Playing on the top bunk wearing silly hats.
Jaylie and her 3 Hello Kitty's from build a bear. She loves all her stuffed animals but these are her fav! Her Nana bought her the pink one a month or so ago and then the orange one a couple weeks ago. The orange one is for Halloween:)
Crew just went up to Breklyn and gave her a big hug for like over 10 seconds so I hurried and snapped a picture. They are too cute.