Haylie update - June 12
We had an ok night last night. We just had a lot of wakeups due to nurses needing to give her some new medicine for her stomach pains and having to get up often to go potty and of course, eat. She wanted Cheetos at 4:30 this morning. Actually she wanted popcorn again but I had none so she settled for Cheetos.
😂
Drs had some good news for us this morning! Her spinal tap pathology results came back clear! Praise God! Now she won’t have to have a spinal tap every week but can wait 3 weeks. I’m so thankful because I think some of her back pain and headaches are coming from the spinal tap. Her WBC count is down to 1.9! Unfortunately, her hemoglobin levels have dropped again and the doctor ordered another blood transfusion today. We are so thankful for the plentiful blood supply available to her today. So so so many wonderful people have donated blood to make that possible. I spoke to the director at Carter Blood Care this morning and he said all their blood levels are in the green today except O-. They have seen an increase in the blood donations this week to make that possible. I hate that we had to go through what we did on Sunday night with not being able to get Haylie the blood she needed at first, but again God provided. Now, because of some of the awareness and the amazing heart of people who are willing to help, there is enough blood today for anyone who might need it. Sweet Haylie is making an impact to help lots of other people. That makes her and my heart happy.
We have had another rotating door this morning with nurses, residents, physical therapy, Child life, the dog lady, the cleaning lady, the hazardous waste guy. Typical morning. She was so worn out by the time the news crew got here she couldn’t even sit up bless her heart. We had to ask the news crew to reschedule for later today or tomorrow. They were very kind and understanding because they could see Haylie was really struggling. The blood transfusion should help give her energy back so she should feel much better by tomorrow. She is sleeping now so that should help also. I’m going to have to take a selfie of me with my hair washed, makeup and matching clothes. It’s a big day. I just can’t believe I got all ready for nothing and I’ll have to do it again tomorrow.
😜.
Haylie laughed this morning and reminded me of a Mother’s Day card
Brennen gave me in preschool that was fill in the blank and said My
mommy looks pretty when...his answer was “when she wears makeup”. 😂
It is now afternoon and Haylie is currently getting her red blood cell transfusion. I was told it would take about 3 hours. She should start feeling better even before the transfusion is complete. Bless her heart she just gets so weak and crashes so quickly. She was doing great and the music therapy lady was teaching her some piano chords when she just crashed again. Just sitting in bed sometimes wears her out. Doctors have told us this is normal and we will have good days and bad days. I am thankful that the new stomach medicine seems to be helping her stomach today, so we will rejoice in that.
Michael just called and he donated platelets today. We are learning that every bit helps and can actually save someone else’s life. Thank you to all donors.
We are hoping to make it to the playroom today to finish a project she has been working on for days. I’ll post a picture when it is officially done.
It was great to see my Aunt Melloy and cousin Janna today. They came up and visited and prayed over Haylie. I am always encouraged to be around such amazing women. I was also encouraged by the devotional in my Jesus Calling book today. The last sentence said, watch to see how I transform trials into blessings. God can use even this painful time in our life and transform it into something beautiful.
#HealingForHaylie
We had an ok night last night. We just had a lot of wakeups due to nurses needing to give her some new medicine for her stomach pains and having to get up often to go potty and of course, eat. She wanted Cheetos at 4:30 this morning. Actually she wanted popcorn again but I had none so she settled for Cheetos.
😂Drs had some good news for us this morning! Her spinal tap pathology results came back clear! Praise God! Now she won’t have to have a spinal tap every week but can wait 3 weeks. I’m so thankful because I think some of her back pain and headaches are coming from the spinal tap. Her WBC count is down to 1.9! Unfortunately, her hemoglobin levels have dropped again and the doctor ordered another blood transfusion today. We are so thankful for the plentiful blood supply available to her today. So so so many wonderful people have donated blood to make that possible. I spoke to the director at Carter Blood Care this morning and he said all their blood levels are in the green today except O-. They have seen an increase in the blood donations this week to make that possible. I hate that we had to go through what we did on Sunday night with not being able to get Haylie the blood she needed at first, but again God provided. Now, because of some of the awareness and the amazing heart of people who are willing to help, there is enough blood today for anyone who might need it. Sweet Haylie is making an impact to help lots of other people. That makes her and my heart happy.
We have had another rotating door this morning with nurses, residents, physical therapy, Child life, the dog lady, the cleaning lady, the hazardous waste guy. Typical morning. She was so worn out by the time the news crew got here she couldn’t even sit up bless her heart. We had to ask the news crew to reschedule for later today or tomorrow. They were very kind and understanding because they could see Haylie was really struggling. The blood transfusion should help give her energy back so she should feel much better by tomorrow. She is sleeping now so that should help also. I’m going to have to take a selfie of me with my hair washed, makeup and matching clothes. It’s a big day. I just can’t believe I got all ready for nothing and I’ll have to do it again tomorrow.
😜.
Haylie laughed this morning and reminded me of a Mother’s Day card
Brennen gave me in preschool that was fill in the blank and said My
mommy looks pretty when...his answer was “when she wears makeup”. 😂It is now afternoon and Haylie is currently getting her red blood cell transfusion. I was told it would take about 3 hours. She should start feeling better even before the transfusion is complete. Bless her heart she just gets so weak and crashes so quickly. She was doing great and the music therapy lady was teaching her some piano chords when she just crashed again. Just sitting in bed sometimes wears her out. Doctors have told us this is normal and we will have good days and bad days. I am thankful that the new stomach medicine seems to be helping her stomach today, so we will rejoice in that.
Michael just called and he donated platelets today. We are learning that every bit helps and can actually save someone else’s life. Thank you to all donors.
We are hoping to make it to the playroom today to finish a project she has been working on for days. I’ll post a picture when it is officially done.
It was great to see my Aunt Melloy and cousin Janna today. They came up and visited and prayed over Haylie. I am always encouraged to be around such amazing women. I was also encouraged by the devotional in my Jesus Calling book today. The last sentence said, watch to see how I transform trials into blessings. God can use even this painful time in our life and transform it into something beautiful.
#HealingForHaylie
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