10:08 PM:
"I get so tired of holding on. I cant let go. I can't move on. I want to believe there's meaning here.
How many times have you heard me cry out 'God, please take this!'?
How many times have you given me strength to just keep breathing?
Oh I need you. God, I need you now!
Standing on a road I didn't plan....
I walk through the shadows and I am so afraid.
Please stay right beside me with every single step I take.
How many times have you heard me cry out 'God, please take this!'?
How many times have you given me strength to just keep breathing?
Oh I need you. God, I need you now!" - Plumb "Need You Now (How Many Times)"
Rochelle, this is my new favorite song. It's so fitting right now though, as you mentioned, it makes me cry every time. I'm adding it to Bella's Super Bella playlist that I made for her.
Thanks Coach K & Lady Panthers for the note! It's hanging on Bella's hospital room wall.
11:39 PM: Tonight Brody had a t-ball game scheduled at 7 and Faith had a Spring Band Concert also at 7. Not possible for the parent not at the hospital to be in both places at once so we had to call in reinforcements. I had missed Faith’s Christmas band concert because my job required me to be in St. Louis that night, and Brian had yet to see Brody play a t-ball game or scrimmage (not that he’s had very many). So Brian's mom sat at the hospital with Bella. Brian went to t-ball (which got cancelled at the very last minute - thank God! It's too darn cold!) and I went to the band concert. It takes a village but even with the offer of help from the village, the kids each want mom and dad at their side. These times are really hard on the whole family.
Faith caught a basketball in the face Tuesday night and thought she may have broken her nose. Last night, I noticed her eye was really red and became concerned that it was due to trauma. Doctor thinks it’s just pink eye and prescribed drops. While you’re praying for Bella, please throw a quick prayer in there for Faith that she only has pink eye and no other underlying problem.
I’ve been doing a pretty good job of being strong lately (that EMG test already seems so long ago even though it was only yesterday) but I almost lost it in front of all of the Eustace parents at the band concert. There was a boy – probably 14 or so – running around taking pictures of someone on stage (assuming a sibling). I flashed back to Easter Sunday – the last day that Bella was completely healthy – and remembered her taking my camera and playing photographer with our family and Jill's. I managed to control myself but was really close to breaking down.
Now for news on Bella. She is such a pro at the blood draws now too. She’ll wake up to give them her hand or arm and then she just goes right back to sleep. Unfortunately, her PT has now been scheduled for 8 AM. They had her on the schedule at 9:45, which irritated the heck out of me because I told them numerous times that she has plex at that time, but they moved it up to fit it in before flex. No more attempting to sleep in at the hospital anymore. Bummer! Since we arrived last Wednesday, Bella has only had 1 PT session. She was really too sick to do much at first but I am glad that they will be making it work in her schedule. She did have an OT session this afternoon. She’s not been doing well with her OT. She seems to be more sensitive to pain and trying uncomfortable positions than she was the first go-round. Yesterday she had so much trouble with OT that Brian and I were asked to leave. He had to leave again today during her session. I guess if she wants us to be there, she’s got to be tougher. They’re not going to let her cry to me during her therapy time.
In spite of her pain, she is getting a little bit stronger every day. And she did not get sick at all during plex today. Only 3 more treatments left!
We learned that Bella will move to inpatient rehab (think I mentioned this already) and we are hoping that will be at Dell Children’s. I believe they have an IP rehab facility as part of the hospital. We also learned that Bella will travel to rehab – even all the way to Austin – in an ambulance. That’s a long ride in an ambulance! Brian’s pushing for a helicopter but I don’t think insurance is going to approve that. Dr. Castro will keep Bella for a day or two after her last plex treatment so she will be here through at least next Thursday and possibly next Friday.
Another interesting note…Dr. Castro said Bella is never to have another flu vaccine but everyone else in the house must get vaccinated every year. I don't recall the reasoning but I'll trust it.
Tomorrow The Band Perry is performing here at the hospital! Bella and I are excited that we will get to see and meet them.
One final note of the evening: I really miss my husband. We see each other only in passing at the changing of the guard. We can only talk through text or email most of the time or a quick few words in passing (always with little ears around). And it’s about to get worse because Brian, Faith and Brody will head to Austin Sunday to stay with my parents. They will all start school in Lockhart on Monday. I’m taking the week off since I really can’t concentrate at work these days anyway. Brian will be down in Lockhart trying to find us a place to live that is somewhat wheelchair compatible. It's very hard for us to make major life decisions when we're never together!
I’ve been doing a pretty good job of being strong lately (that EMG test already seems so long ago even though it was only yesterday) but I almost lost it in front of all of the Eustace parents at the band concert. There was a boy – probably 14 or so – running around taking pictures of someone on stage (assuming a sibling). I flashed back to Easter Sunday – the last day that Bella was completely healthy – and remembered her taking my camera and playing photographer with our family and Jill's. I managed to control myself but was really close to breaking down.
Now for news on Bella. She is such a pro at the blood draws now too. She’ll wake up to give them her hand or arm and then she just goes right back to sleep. Unfortunately, her PT has now been scheduled for 8 AM. They had her on the schedule at 9:45, which irritated the heck out of me because I told them numerous times that she has plex at that time, but they moved it up to fit it in before flex. No more attempting to sleep in at the hospital anymore. Bummer! Since we arrived last Wednesday, Bella has only had 1 PT session. She was really too sick to do much at first but I am glad that they will be making it work in her schedule. She did have an OT session this afternoon. She’s not been doing well with her OT. She seems to be more sensitive to pain and trying uncomfortable positions than she was the first go-round. Yesterday she had so much trouble with OT that Brian and I were asked to leave. He had to leave again today during her session. I guess if she wants us to be there, she’s got to be tougher. They’re not going to let her cry to me during her therapy time.
In spite of her pain, she is getting a little bit stronger every day. And she did not get sick at all during plex today. Only 3 more treatments left!
We learned that Bella will move to inpatient rehab (think I mentioned this already) and we are hoping that will be at Dell Children’s. I believe they have an IP rehab facility as part of the hospital. We also learned that Bella will travel to rehab – even all the way to Austin – in an ambulance. That’s a long ride in an ambulance! Brian’s pushing for a helicopter but I don’t think insurance is going to approve that. Dr. Castro will keep Bella for a day or two after her last plex treatment so she will be here through at least next Thursday and possibly next Friday.
Another interesting note…Dr. Castro said Bella is never to have another flu vaccine but everyone else in the house must get vaccinated every year. I don't recall the reasoning but I'll trust it.
Tomorrow The Band Perry is performing here at the hospital! Bella and I are excited that we will get to see and meet them.
One final note of the evening: I really miss my husband. We see each other only in passing at the changing of the guard. We can only talk through text or email most of the time or a quick few words in passing (always with little ears around). And it’s about to get worse because Brian, Faith and Brody will head to Austin Sunday to stay with my parents. They will all start school in Lockhart on Monday. I’m taking the week off since I really can’t concentrate at work these days anyway. Brian will be down in Lockhart trying to find us a place to live that is somewhat wheelchair compatible. It's very hard for us to make major life decisions when we're never together!
11:43 PM: HOLY COW! Just got brave and looked at the claims that have been filed on Bella. Thank God for insurance!!! The first hospital stay was billed at $134k! Fortunately, that is covered at 100% after our $250 deductible. Rehab claims haven't been filed yet and neither has anything from this stay. Wonder how much plex costs? And I wonder if there is some lifetime maximum that we're going to hit with this disease.
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