And we are out

We were discharged this evening, they cannot figure it out at all. So they discharged us and said to come back if it happens again.

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Back in the Hospital

Bug had an incident yesterday and we are back in the hospital. She had an MRI last night and the good news is they didn't rush her into surgery or straight to the ICU! Instead she was admitted to the neurology floor for monitoring.

We definitely are asking for prayers as the doctors try to get to the bottom of what happened instead of settling for "she seems fine now."

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B90, Monday Morning Check-in, Day 74

Well, I'm on Day 46, SO behind, so not stressing about it. As I said last week, it's been a rough time for me.

As I sit here typing this right now I am in the surgery waiting area at Children's Hospital. My incredible daughter is in surgery right now. Everything is going well as of our last update.

I'm hoping to get plenty of reading done this week while we are at the hospital, but if not, it's not a big deal. It will get done sooner or later.

Please pray for my little one and her doctors. :) Thanks :)

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B90, Monday Morning Check-in, Day 60

Okay, I am ridiculously far behind, so far behind I am embarrassed to post it. I am on Day 39. OUCH. I am working on it though. I haven't been doing as well catching up as I'd like though. I need to make it a bigger priority. Still though, I am NOT giving up, no matter what. I WILL finish reading the Bible. And I am praying that I will finish ON TIME.

I have posted before about my daughter, Bug, and her ongoing health concerns, and asked you to keep her in your prayers. Once again, I ask you all to please pray for her. She has a surgery date set. March 17th. Please keep her and her doctors in mind when you pray. Thank you!

I DO find the reading encouraging and uplifting, it sheds a bright light on my life, so I am trying hard to get my reading in.

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MRI scheduled

SUCH a difference from scheduling Bug's MRI, LOL.

The sedation nurse called this evening to review the health assessment to ensure Peanut was healthy enough for sedation. After determining her to be healthy enough, she said she'd send the paperwork up to scheduling and they'd call me TONIGHT. She told me that I could choose to do the MRI at the other facility, and explained the differences between the two, which are minor, but did give me cause to consider what I wanted to do.

In a matter of less than an hour scheduling called and we were able to get an appointment fairly soon. I opted for the same facility that did Bug's MRI, the main facility. Hopefully we'll have the answer soon. :)

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MRI called

WOW... The doctor works fast!! LOL

MRI called today and did the initial health survey for Peanut to start the process of clearing her for sedation. :) This is GREAT news.

I totally spaced on calling Bug's neuro today, but before I go to bed I'll call and leave a voicemail for the assistant, she can call tomorrow and talk to BFF who's been fully approved now for discussions.

On another note, the medical supply company that is providing the oximeter for Bug has been very helpful, there was some mix-up, but the therapist is coming out tomorrow and is going to fix it all, set up the machine for us, and FINALLY Bug will be on her oximeter.

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Another Trip to the doctor

Okay, tonight I took Miss Peanut to see our WONDERFUL pediatrician. You know I just LOVE a doctor that sees patients at 7:30 at NIGHT. Anyway, the reason for the appointment was to request that Peanut have an MRI of her brain. See, I know I'm a bit paranoid sometimes, however...

There is a surgery happy ophthalmologist wanting to practice on my Peanut. And I don't feel like it's fully explained yet. Plus, when Bug's neurologist called and told me about Bug having Chiari, many of the symptoms that he mentioned, Peanut had. The more research I did, the more I realized, that Peanut NEEDS to have an MRI and TRY to rule it out.

Chiari COULD account for her vision problems. Chiari COULD account for a lot of things, or she could be Chiari-free. And I don't know, but that is the problem, we NEED to know. I need to know that we are NOT operating on her eyes when they aren't the real problem in the first place!!

The doctor is a very down to earth woman, who doesn't blow me off. She listened to me, and agreed with my reasoning. She said she would work her end on the MRI referral. Meanwhile, I am free to pursue having her seen by neurologist if I want to. If I choose to go that route, she will authorize the referrals.

I am going to call Bug's neurologist and see if he will see Peanut. I don't know that he will, he is a specialist in Epilepsy, and Peanut doesn't have Epilepsy. But I'm hoping that he will take her anyway just because he sees Bug and I don't really want to have multiple neurologists! IF Peanut DOES have Chiari, I KNOW I will insist that she see the same neurosurgeon. My thought right now, I would LIKE to have her seen by the neurologist to make sure there is someone who really knows what to look for when the MRI is done. Having someone I already have a rapport with would be nice too!

Well, I'm off for some much needed rest!!

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B90, Monday Morning Check-in, Day 46

A day late and a dollar short.... Well, my POST is anyway.

But my reading, well, I'm on Day 34... The last 2 weeks have just been impossibly hard on me, I have allowed myself to stray from The Word too much. But this Sabbath I was blessed with good health for myself, and all the kids, and was able to attend church. It really helped me refocus.

As I said in last week's check in, my Bug is facing some pretty serious health issues. We saw her neurologist last Tuesday and it's actually worse than I had expected or hoped for. I know many of you are already praying for us, and I beg you to continue. I truly believe in prayer, and I know Bug, our family, and the doctors caring for her need prayers. Since I don't want to FILL my check-in post with Bug's health concerns, I invite anyone who'd like to follow her story to visit her Caring Bridge page, just register and send me a quick note to let me know who you are. Bug's Bridge

As for my reading, I'm not giving up, I'm not planning to end late. I am going to do what I've done before, read multiple days at a time. I'm planning to read at least 2 days worth a day, whenever possible. And I will not skip any days if I can help it. If I have a slow day and can read more I will. I am hoping to be fewer days behind next time I check in :)

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It's been a rough week

Okay, so I realized I basically haven't blogged in an entire week. So here's what's going on, short version:

We had the appointment with Bug's neurologist, and she has the Chiari and Syringomyelia and it's BAD, worse than we expected. It will require surgery. That's about ALL I know though until I meet with the neurosurgeon later in the month.

But it's left me absolutely wiped out. I just have been physically and emotionally drained. I feel like I'm finally getting myself back.

I'm behind on EVERYTHING right now. But it's okay. I will catch back up, and when I fall behind again, and I will, it'll be okay then too, because I will catch back up again.

I know everything will be okay, I have God watching over Bug and I and her sister Peanut too. :) We have INCREDIBLE friends who make sure that we are taken care of.

God is GREAT! And I know he is using this and us as a way to show his glory! :) Satan, you are going down!!!!

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Bug's MRI results...

Well, yesterday Bug's neurologist called with the results of her MRI.

It was NOT clean and clear as expected. :( Bug does NOT have any tumors (since everyone asks this right away). She does have a Chiari Malformation.

What is a Chiari you may ask? It's where the cerebellum in her brain has formed improperly and is protruding downward toward the opening in her skull by her spinal column. This website at Children's Hospital Boston gives some pretty good information about Chiari but no pictures. This site Conquer Chiari has a GREAT visual of a NORMAL cerebellum and a Chiari. So that should help you understand what is going on in my Bug's brain!

The neuro said the Chiari COULD be causing some of the seizure activity, but he firmly believes she has both Epilepsy AND Chiari. Mainly because all her previous testing was SO conclusive for the electrical signatures for a seizure, and also because the medication she takes is HELPING.

The biggest current concern with Bug's Chiari is that on the MRI they already could see pockets of fluid, which is a symptom of the Chiari preventing the normal cycling of her cerebro-spinal fluid within her brain and spinal cord. This very likely will require a shunt to be placed. For that reason we will be meeting with a FANTASTIC neurosurgeon later this month.

Due to some information I have found that there is a SMALL chance of it being genetic (and even her neuro said that yesterday), and the fact that Peanut's Ophthalmologist wants her to have eye surgery, I am getting Peanut into the Pediatrician next week to talk about having her have an MRI. I want it done ASAP. She exhibits some of the signs of a Chiari, including eye problems. I do NOT want to operate on her eyes only to discover that her problem never was her eyes but was her brain. Fortunately, I think the pediatrician, who already knows I am not comfortable with having Peanut's eye's operated on, will agree with me.

For now though, we are just in status quo mode for the most part. Bug doesn't know anything is wrong with her. I have to watch and call the neuro if certain symptoms present themselves, and make sure she doesn't ride any roller coasters (wasn't gonna happen anyway LOL).

I definitely ask everyone for their prayers to help us get through whatever is put in front of us, and for the doctors treating both my little girls. That God will guide them and give them the wisdom, skill, and knowledge they need to do what is BEST for the girls.

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