Long and Grueling Day

today was sucky~ First, i finally passed out at 4am!!! I woke up at 645am and had to give Quinn eyedrops to dilate her eyes for the opthalmology appointment at 9am. So we started heading there around 745am. got there a little late. Was having issues getting out the door on time... oooppss. so we get there around five minutes late, wait in line and finally check in at 922 am. Quinn had a neurology appointment 15 minutes away at 1030. we were suppose to be in and out of there. At 1000, i started complaining about my wait time, then we finally were taken back at 1010. I asked them how long this was oging to take, they looked at her eyes for a minute and said that the doc would be in there to determine if she needed glasses or was experiencing degeneration in her eyes. Well, 1025 rolled by, we didn't see a doc so I just left!!!! Quinn's neurology appointment is WAY more important than an eye doctor appointment. We arrived at neuro 10 minutes later :( ugh!!! i was so pissed!!!  I dilated her eyes for no apparent reason!!! And we woke up super early because of it. I guess the only cool thing is that Quinn slept the ENTIRE TIME!!! literally. she slept when we left, she was snoring in her umbrella stroller while in the wait room, woke up enough for a little eye exam, then slept on the way to neuro and slept in the stroller and woke up again when they were getting her vitals. So silly! she honestly has been having a rough couple days, but i think ti's because I fed her pizza on Saturday... shame on me :( it's so hard to not give her food!

So anyway, the neurologist: She said that she thinks Quinn has MITO and should be on the MITO cocktail. LMAO!!! i'm sorry. I can only think humorously about this in order to not get pissed. I wonder how many times I have mentioned that I felt that she had something called MITO and how many times eyes have been rolled or I have been laughed at. So anyways... she was explaining to me about all the chaos from January's hospitalization. She said that it was a madhouse in Loma Linda and that she was trying to get Quinn admitted, but it was impossible. So she was sent to CHOC. She first asked me what I thought of CHOC. I said the nursing staff was great but I hated the doctors. She said that she had some major issues with the residents as they had no idea how to treat a child with seizures and all the issues Quinn had. She felt that quinn was discharged way too fast (2days in ER and finally admitted to CHOC and was dishcarged in 24hours) She said the residents called her every hour and during the night about how they are suppose to treat a child like Quinn... and then they discharged her, before she was really that well. She wasn't even walking unsupported when they discharged us! I think they just didn't want to deal with us because I was really pressing the issue on trying to get her accurately diagnosed so we can know what we are treating here. Anyway... too bad all that played out like that.

so, I updated her on what's been going on the last few months. Things suck. All her EEGs have come back not really clean, but not really  indicating seizures. However, we KNOW she has serious full blown grand mals. It's documented in hospital, on 911 records and of course, we have one of them video taped. She still wants to try for another EEG to see if we can pinpoint the best way to treat her seizures and what meds will help. However given the fact that Quinn hasn't had a seizure since she was put on o2 24/7, she thinks strongly that it is related to her respiratory drive. Even then, Quinn is going to have yet another EEG.

And about her MRI from a year ago, the one that only showed an abnormally bright white matter and was "essentially normal"... but wasn't too much to indication leukoencephalopathy... well, that's a big red flag for MNGIE, which is what she is being worked up for. It's likely leukoencephalopathy, but the doc feels that she is pretty high functioning cognitively so we aren't officially going to diagnose her since it was just a little off and not a lot. She will have a repeat brain MRI in six months or so. The doc is concerned with putting her under too many times due to her central apnea and oxygen dependency.  If the tests for MNGIE come back indicating that MNGIE is unlikely, she wants us to go through with a muscle biopsy... which might be a good time to do her MRI... She feels strongly as well that Quinn does in fact have MITO. She also talked about the geneticist that we saw when Quinn was two... and I told her that the geneticist said that Quinn is the healthiest kid he sees and she said "well that's not very helpful".

We are to follow up in 2 months.

She gave us a prescription for a medical stroller :) and one to get her started in physical therapy.

Quinn's belly is giving her problems... AGAIN!!! on only 35ml/hr of formula. i hope it's just a fluke and something she just needs to work out of her system, but omg! seriously! I'm getting so tired of this. It's stressing me out! she begs me for food. she says her tummy is hungry and when I give in and give her food, she suffers because of it! I just HATE not being able to feed her. I feel terrible eating in front of her.

This weekend, Quinn went bowling for the first time with mommy and Joe. Joe is SSSOOOOO good with her! he's amazing! and she loves him.







And to end the entire day... a little good news and a little sad news. I had to say goodbye to my super awesome VW GTI. Unfortunately, Quinn's needs are not practical for that car anymore and it is getting harder for me to put her in the tiny two door car. Plus, her having oxygen and feeding tube, things just don't fit in the trunk for a day out at doctors' appointments or things like that. 

Goodbye my sexy car 



Say HELLOOOO to my NEW baby! :)