Haylie Update - Sept 24
It’s been a good weekend. I didn’t get a post out on Friday from her last hospital visit. Her levels dropped slightly, her hemoglobin was still above 8 at 8.1 so she did not receive a blood transfusion. Doctors told me to probably expect one today. We are headed back to the hospital again today and Wed for the last 4 irwinaze (chemo) shots this round. These are the worse and most painful for her. She has done well, but it really catches up with her.
Brennen’s 4 baseball games were a total rainout this weekend, so it actually gave us a chance to stay home and try and catch our breath. My house has been a complete disaster lately. I was able to get some cleaning done. We were also able to go to the glow girls car wash yesterday. They raised $454 for a donation to Childrens hospital in honor of Haylie. It was so good to see friends and Haylie is excited that she gets to help give a little back to the hospital helping her.
I have to be honest and ask for prayer for time management and organization for me. I have felt completely overwhelmed the last 2 weeks trying to get everything done. I have been waking up in the middle of the night or early each morning just thinking of the things I need to get done...one of the biggest on my mind is trying to get out thank you notes. We have been so unbelievably blessed by so many who have sent get well cards, gift cards, care packages and made us meals when we first came home from the hospital. The list is amazing. I have felt so much guilt in trying to get thank you cards out to everyone and I have to tell you that I just need to ask for grace. I want to thank everyone and not seem ungrateful, but honestly it may take me a year or 2 to get them out. Between trying to deal with our insurance paperwork, hospital visits, bills, cleaning the house, all the homebound schoolwork, Haylie needing me every 2 mins, practices, games, meals etc I am feeling completely overwhelmed. I plan on knocking things out each day, but it seems that every time I sit down to work on something, Haylie needs me again. I’ve felt like I haven’t accomplished anything in weeks. So in order to try and get some sleep at night I am offering a huge thank you to all the people that have helped us and sent care packages snd donations. Thank you, thank you, thank you! We really do appreciate everything and each one of you. I’m sorry I haven’t been able to personally thank each one of you yet. I’m still working on it.
This is just one more hurdle, but we will get through this as well. This is homecoming week in our town and it’s spirit dress up days. Y’all, it’s space day and I remembered at 10:30 last night. Brennen insisted on wearing an old Star Wars shirt that is too small to school today. If you see him, just smile and wave. That sweet boy...he has an orthodontist appointment today after school and I am hoping to make it home from the hospital in time to get him there. I told him about it on the way to school this morning and he told me he could just ride his scooter there, if he could just figure out how to get there.
😜
😬
🤦🏽♀️.
I’m thankful that he has been extremely flexible with everything
through all of this. I know there are a million other moms juggling 18
things right now too. So today, I think we need to just offer each
other grace. Life isn’t perfect, it never will be, and I just can’t even
pretend to keep up with the perfect mom. A friend posted the funniest
meme the other day and when I think I’m totally failing at being a good
mom, I compare myself to that animal and realize I’m at least better
than that. 😜
Hang in there moms, we can do this!
#HealingForHaylie
It’s been a good weekend. I didn’t get a post out on Friday from her last hospital visit. Her levels dropped slightly, her hemoglobin was still above 8 at 8.1 so she did not receive a blood transfusion. Doctors told me to probably expect one today. We are headed back to the hospital again today and Wed for the last 4 irwinaze (chemo) shots this round. These are the worse and most painful for her. She has done well, but it really catches up with her.
Brennen’s 4 baseball games were a total rainout this weekend, so it actually gave us a chance to stay home and try and catch our breath. My house has been a complete disaster lately. I was able to get some cleaning done. We were also able to go to the glow girls car wash yesterday. They raised $454 for a donation to Childrens hospital in honor of Haylie. It was so good to see friends and Haylie is excited that she gets to help give a little back to the hospital helping her.
I have to be honest and ask for prayer for time management and organization for me. I have felt completely overwhelmed the last 2 weeks trying to get everything done. I have been waking up in the middle of the night or early each morning just thinking of the things I need to get done...one of the biggest on my mind is trying to get out thank you notes. We have been so unbelievably blessed by so many who have sent get well cards, gift cards, care packages and made us meals when we first came home from the hospital. The list is amazing. I have felt so much guilt in trying to get thank you cards out to everyone and I have to tell you that I just need to ask for grace. I want to thank everyone and not seem ungrateful, but honestly it may take me a year or 2 to get them out. Between trying to deal with our insurance paperwork, hospital visits, bills, cleaning the house, all the homebound schoolwork, Haylie needing me every 2 mins, practices, games, meals etc I am feeling completely overwhelmed. I plan on knocking things out each day, but it seems that every time I sit down to work on something, Haylie needs me again. I’ve felt like I haven’t accomplished anything in weeks. So in order to try and get some sleep at night I am offering a huge thank you to all the people that have helped us and sent care packages snd donations. Thank you, thank you, thank you! We really do appreciate everything and each one of you. I’m sorry I haven’t been able to personally thank each one of you yet. I’m still working on it.
This is just one more hurdle, but we will get through this as well. This is homecoming week in our town and it’s spirit dress up days. Y’all, it’s space day and I remembered at 10:30 last night. Brennen insisted on wearing an old Star Wars shirt that is too small to school today. If you see him, just smile and wave. That sweet boy...he has an orthodontist appointment today after school and I am hoping to make it home from the hospital in time to get him there. I told him about it on the way to school this morning and he told me he could just ride his scooter there, if he could just figure out how to get there.
😜😬🤦🏽♀️.
I’m thankful that he has been extremely flexible with everything
through all of this. I know there are a million other moms juggling 18
things right now too. So today, I think we need to just offer each
other grace. Life isn’t perfect, it never will be, and I just can’t even
pretend to keep up with the perfect mom. A friend posted the funniest
meme the other day and when I think I’m totally failing at being a good
mom, I compare myself to that animal and realize I’m at least better
than that. 😜Hang in there moms, we can do this!
#HealingForHaylie
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