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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Sleep Deprived EEG

Yesterday I was WAY too tired to properly blog, or type my own name for that matter!!! LOL

Bug had her "sleep deprived EEG" yesterday. The night before I had to keep her up until after midnight. BFF's DH said it wasn't too bad at first, and then I got home from work and took over, she was pretty good until about 11 pm. Then she turned loopy. But we kept her up until about 12:15 am.

Then BFF's DH woke her at 5am. A HUGE thank you to him for being the one to wake with her and therefore allow me to sleep a couple extra hours!!! :) I got up at 7 and resumed the keeping her awake duties. Around 10:30 we started getting everyone out the door.

The car ride to the facility was pretty rough. We stopped at Dunkin Donuts on the way for BFF and I. I had Bug come in with me just to keep her moving. Shoot, I wanted to fall asleep so I KNEW she wanted to! LOL

We were almost there and the other kids were no longer able to keep her sufficiently awake for me, so I jumped in the back of the van and annoyed her enough to keep her awake. THAT WAS ROUGH.

She was much more alert at the office though, playing in the play area, though arguing with me over where to sit, etc. Oh yeah, loads of fun. LOL

She finally was called back and she was SUCH a good girl. She sat still and stayed awake. Putting the wires on was hard because she had to be so still but stay awake. I promised her 10 "monies" and a trip to starbucks at a later date if she stayed awake. :) She earned it fair and square! LOL

She did everything the tech asked of her. She did NOT ever throw a temper tantrum, or cry or anything that a cranky overly tired usually does. I was SO proud of her!!!

When she was FINALLY told she could sleep she did so with PLEASURE. She only got to sleep for about 10 minutes, but I am sure she enjoyed it completely!!! :) :)

Tomorrow bright and early she and I head out to Boston for her appointment with the neurologist. Hopefully he will have some answers for us about what is going on with her. Or a direction to go.

Thank you for all the prayers up to this point and please continue to pray for my little Bug!!

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Milk is GOOD

So the pedi's office just called and reported that Bug is NOT allergic to milk proteins. YAY! :)

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EEG and an appointment at Children's

I had made a decision that I was no longer going to blog about this situation with Bug, or post Facebook statuses about it. But after much thought and prayer I decided that I was not going to let anyone's words or actions prevent me from telling my friends, and strangers who might need to know they aren't alone, what is going on.

Children's Hospital neurology called yesterday, and the woman I spoke to initially was so kind and wonderful. She asked me to tell her what was going on, and when I said it was kinda long she told me to take my time. So I did. And she said it definitely sounds like Bug is having seizures and they'd like to see her. She said their scheduler would call me back. I gave her BFF's name and phone number in case it was after I went to work.

They called me back, as I was about to walk out the door for work. LOL I scheduled her appointment for Friday, when I'm supposed to be at work. And got the necessary information, or so I thought, and walked out the door. I got to work and told my manager about the appointment and she was very gracious about it and it will not be an issue that I am missing the time. I will just get there as quickly as I can.

BFF took care of sending medical records and sending off the referral information to the pediatricians office. Somehow in all the rush of everything we totally forgot to get the name of the doctor she would be seeing! So the wonderful gal at the pediatrician's office couldn't process the referral. LOL

So I worked the rest of my shift, it was rough, I was prone to crying because I've reached that point where I am just out of control. Something is wrong with my little girl, and while now, TODAY, I realize we are on the path to answers, and with the GREATEST doctors we can get, last night, it was hard to see that. And I just felt totally out of control and upset and yeah... So I got through my shift, came home, had some DELICIOUS cheesy lasagna, and decided to hop in the shower.

Now once upon a time I took HOT showers, but living with 10 people you learn not to, because when you are the LAST person you want to be able to take at least a warm shower so you take less than hot showers when you're the first LOL. So I was taking a warm shower, really just saving the hot water for the end. But less than halfway through my shower, with body parts left to shave and conditioner still in my hair, the water ran ICE COLD, and I mean I saw penguins in my tub cold!!!!

It was the last straw. I started bawling in the tub, shut the water off, sat down soapy and cold, and cried for a good 10 minutes or more. And then hoped that the water might be lukewarm so I could finish shaving and rinse my hair. Nope, still penguin cold. *sigh* BFF's DH later checked the water and it was STILL ice cold, maintenance is coming to check on our hot water heater today. :)

So first thing this morning I called the clinic back and asked for her doctors name and emailed it to the pediatrician's office for the referral. And then was told Bug needs a sleep deprived EEG before her appointment on Friday. And all the appointment options were during my work shifts. I took the one that seemed the least intrusive though and immediately called my manager and told her and she said don't worry about it. LOVING MY MANAGER!!!!! :) :)

Now the GREAT thing is HOW EXACTLY do you sleep deprive a 3 1/2 year old for a NOON EEG?? Well, ya wake her up at 3 am. BUT, this results in a sleep deprived MOMMY too. Well, make that 2 sleep deprived mommy's, since BFF has offered to get up with me to help me out. I LOVE MY BFF!!! :) :) And my other good friend Tink is getting coffee detail! LOL She rocks and knows children's pretty well too. I may still ask her to go with me on Friday, but I want to be a "big mommy" and do it myself LOL

I'm still hopeful for answers. I have asked all my friends to pray for Bug and for me, and the doctors too. I am sincerely hoping we get some answers SOON.

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Topsy Turvy...

Well... I knew life couldn't ever slow down.

Earlier this week we finally found shoes for poor Bug. She has very wonky feet. Normal width in the toe box, wide through the arch, extremely narrow through the heel, and no fat across the top, which is odd for a toddler. She is a tough fit. After much frustration we found a store in Lexington that specializes in fitting difficult feet. Of most importance, they carry multiple brands. Well, we got her into a pair of sneakers that set me back a good chunk of change.

For their good behavior on this outing, we took all 7 kids across the street to Starbucks for a treat. After her hot cocoa and pumpkin bread, Bug started reacting badly. We gave her some more food and got her moving but it shook me. Later that evening BFF and I discussed it. Several pieces began to fall into place and the big picture started to look a little less pleasant. My little Bug might not be so healthy. So after 2 days of asking for my schedule early at work, BFF took matters into her own hands and just called for an appointment and hoped for the best today.

Well, after hearing our concerns, the pediatrician's office wanted to see Bug TODAY. Unfortunately, the latest appointment they could get us was at 2:40, I got off work at 3. BFF called to tell me and I talked to my on duty manager who was GREAT about it and let me call in my relief early so I could go. I owe them both!!

We got to the pedis and explained everything to the doctor. Without getting into ALL the details... The doctor is a little confused on what it may be, because it is NOT presenting with any classic symptoms of a particular condition. SO... although neither of us feels it is this, she sent her for blood work to rule out a milk allergy because the "incidents" all seem to occur with milk. I agree to ruling it out mainly because the wait for appointments at the allergy clinic is literally 4 months!!!!!

The pedi is sending her to the neurology clinic to test for epilepsy. I actually do NOT believe she has epilepsy. But I will go on with this testing only because it will make it that much easier to get testing for what I believe is really going on. I believe she has some form of diabetes.

Diabetes CAN cause seizures, and since the "incidents" that have been witnessed have been petite mal seizures, IF they are seizures at all, it seems more likely to be NON epileptic. Since the incidents ALWAYS follow food consumption, especially milk, it seems more sugar related, which is more diabetic. Plus, we have the family history, although of type II not, juvenile, and I was gestational diabetic, insulin dependant. AND Bug was low blood sugar at birth... yeah, my connect the dots leads to diabetes, not epilepsy.

So... I tried to make the appointments, only to be told that the pediatrician needed to make the appointment, called the office, left the message and never heard back, I WILL be on the phone first thing Monday morning. *sigh* I want to RULE IT OUT.

We went straight to the clinic for the blood draw, and poor Bug was JUST there yesterday for a blood draw. She got in the room and very matter of factly said "Mommy, my getting poke." She didn't cry yesterday, just got agitated, but today she did cry a bit, but only for a few seconds and when it was all over and she got to pick out her TWO stickers (Cinderella and Tinkerbell) she was all smiles again.

Anyway, I will try to keep everyone updated. The girls have their very first dental appointment on Monday! I will post results!!

***Edited on 12-28-09: This is the day that changed everything for Bug... That day she got sick buying shoes for her, and the subsequent appointments led to a diagnosis that changed her life. Initially I was scared by it. I admit it. But once I came to grips with it, and accepted what needed to be done, she got appropriate treatment and has improved SO MUCH. In many ways we are still adjusting to it, but 2 1/2 months later it's MUCH easier to accept than it was back in October.***

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