Endocrinolgy Appt., Check. Next up.. EEG

Yesterday I struggled to stay awake. I couldn't keep my eyes open for the 9hrs I was at work, to save my life. I wanted to sleep as soon as I got home, but both my girls had different plans for my time. We had a friend over for dinner and talked about life over a beer.. when she left, AK and I finally had a sit-down discussion on what was happening around us. We haven't talked yet about our little girl. We've just assumed our roles in this madness and pushed thru.. as sad as it is, whenever we do get a free chance to sit down and talk, we both look at each other and say "Let's try to sleep.. Im tired". Last night it was overdue. We talked for hours about both our little girls that were sleeping upstairs, we discussed our plans, wishes, goals, if/when's, even the brutally honest cold-harded truth about what was taking over our lives. It was a hard conversation to get thru but we did it. I slept well last night. I think our conversation helped at lot.

Annabelle, as usual, had several pain spells during the night which woke me up. I didn't go upstairs too often though, she moaned her way thru most of them. The best sleep I got was when my alarm went off at 6am. I told AK, "I can't.. I cannot get up right now.. hit snooze". I didn't, he took a shower and shut our door and let me sleep until I got up. I really needed to get to work at 630am but I didn't make it in until closer to 7:45am. I was so exhausted, but I swear all my rest came from that last hour of sleep that I got. It was worth a million bucks. Before I left my house, I made myself a bold cup of coffee and reached for the Red Bull in the fridge. I wasn't about to struggle thru my day like I did the day before. I was ready this morning!!

I sent off several emails and checked on a couple things at work before I had to leave the office for Annabelle's Endocrine appointment. We made it there just in time to get lost in the medical park; both the parking lot and building, but somehow managed to find our way. I swear it was a maze that's setup for failure.. whoever that designer was should be fired. While I was checking in, Annabelle drew on the chalkboard easel in the waiting room. She was smiling and enjoying herself.. when we were ready to go to the back, I simply wiped the chalk off her hands and we headed on our way... making a mental note: My kids need one of these! She absolutely loved that thing, and why do we not have one?! Annabelle rarely/ever/never gets new toys, let alone something big and fun, I think if I push my pennies smart enough.. she will be getting an easel soon :) I know both girls will absolutely love it! 

Dr. Frances, Endocrinologist, was wonderful. He spoke with me for quite a while and offered a lot of insight as to what we are experiencing, on an Endocrine side of things only. Unfortunately he was honest with me that the entire load of Annabelle's issues are not his specialty and he doesn't believe are Endocrine related, but he did have his own concerns in several areas.. and while they may not solve this entire puzzle, they may at least offer more pieces to other doctors plate to help us figure out what is happening. 

I am 5'9" and apparently in the 90-95% for my height, AK is in the 90% - which is what you would expect our children to also fall into that same percentile. Mady is in the 97% for her height.. Annabelle is in the 30%. The concern is that until several months ago, Annabelle stayed in the 90% for her height just as we would have expected.. since then she's suddenly fallen and hasn't caught back up, just continuing to drop. She isn't 'shrinking', she's just not growing. The labwork we performed two weeks ago indicated that Annabelle's thyroid levels were in the normal range. Dr. Frances wants to repeat those labs and also dig a little deeper into them. He also ordered labs to provide hormone levels to see if anything is off balanced and another to study her chromosomes. He wants to see the number of chromosomes she has and will be looking specifically at the X chromosome for anything missing. (None of this makes sense to me, but it may to someone else that actually paid attention in Biology). Dr. Frances also ordered a Bone Age Scan to be performed. 

After him and I talked for quite a while about family histories, genetic Endocrine issues in both our families and all Annabelle's symptoms, he assured me that he would be giving me a call in a few days as soon as all the tests came back and we will see if any of this answers any of our questions. Fingers Crossed!

A nurse in the office was on site to perform Annabelle's labwork. This is always hard for me, because I never want to come across as rude or a crazy mother - but I always feel compelled to warn the nurse with the needle in her hand, to be prepared. "Annabelle may be the strongest 21mo child I've ever met. I will not be able to hold her down on my own, so please bring another nurse in to help me. Her veins are a pain.. she fights as soon as the needle is in and rolls her veins. They blow easily.. with just a nudge, they blow. Both feet and hands are too bruised to try to get a fair stick, so try for an arm first. Have a backup plan - we've never had a nurse only do one stick and be done. Last thing: you get two tries, that's it and we're done. Good luck." The nurse was beyond wonderful. She gave me great instructions for how to hold Annabelle to keep her the most still. We decided on one vein in the crease of her right arm and the second option would be the wrist/top of her left hand. As soon as I got into position Annabelle started getting upset. The moment she looked at the table and noticed the nurse holding a needle, Annabelle was hysterical as if her arm was already being stuck and painfully dug with the needle - it broke my heart watching her tears POUR off her face before anything even began. She knew exactly what was about to happen.. this has become all too routine for my innocent baby girl, I hate that we have to continue to put her thru this, and I hate that I am always the person sitting in the chair whispering in her ear and apologizing, telling her how much I love her and how sorry I am.

For the blood draw - the nurse inserted the needle and slowly felt around for a second, once she knew where the vein was and where she wanted to go, she looked at me and said "Im not going to go for it until she's a bit more calm, I don't want to take the chance of her moving and I knick the vein and it blow. It's right there.. I just want to wait until she's ready. Another nurse pulled out a couple fun stickers and no one moved.. once it took Annnabelle's attention and she looked at the sticker and reached for it, the wonderful nurse went for the vein without any trouble - filled her vials of blood and it was over. I was literally speechless! Noone should be as excited as I was about labwork being performed but I'm not kidding when I say I wanted to hug that sweet nurse. She did a fantastic job and made it the most easy experience for Annabelle we've had thus far. 

After we left the doctor's office, we headed towards MCV's Satellite Office near Stony Point Medical Center. We checked in with Radiology and both Annabelle and I received our trusty medical bracelets before taking a seat in the waiting room. The scan was fast, they took an Xray of her hand/wrist and will use that for the Bone Age Study. We were there for less than 45min and then started making our way back to the car. It was hot outside and Annabelle wanted to walk. I let her down, after all she seemed to be having an alright day. She started stumbling and then fell, I picked her up and we made it to the car. I sat in the parking lot after she was buckled in and watched her drink her cup for a couple minutes. I was unsure what would happen next. Something just instinctively didn't feel right. I talked myself into leaving, I needed to get Belle back home and get back to work.. I needed to get on the road.

Once I was on 150, I looked in my rearview mirror and watched my baby girl have her first seizure without me holding her. I felt BEYOND helpless as I drove down the road watching her eyes roll, the size of quarters and her move about. I wanted to rip the car to the side of the road but I knew an act like that would be more dangerous than just watching to make sure she was ok. She was, once it was over she cried a bit and then seemed to want to fall asleep.. as usual. We were passing rt.10 so I decided to get off and take the long route home, this way I would pass the pediatricians office in case something odd should happen. As I was driving down the road, I looked up and she started acting odd, restless and getting upset again. I picked up the phone immediately and called my pediatrician on her cell, "Hey Dr. Young, I think Annabelle's about to have another seizure and I'm literally pulling into your parking lot. You want to come outside and watch this?" Annabelle started seizing and stopped as I parked the car. Dr. Young and a nurse came outside to meet us. We talked for just a moment and then she asked how long Annabelle would be out. Annabelle hadn't opened her eyes or regained consciousness from this last episode. Dr. Young called her name several times without response. She started tapping her shoulder and then moved into popping her leg and chanting "Annabelle! Annabelle!" Finally she started to pick her head up, it took everything she had to open her eyes and then put her head right back down. Several second later she picked her head up again and stared out the window towards the buildings, she wouldn't make eye contact with us or respond to any questions. I don't know if she was just very disoriented or if she truly wasn't there for that period of time. Dr. Young and the poor nurse seemed visibly shaken and upset, I on the other hand seemed less than phased, in fact, I would say I was irritated. When I watch my little girl experience things like these lately, I don't panic and want to run to a hospital - I get ticked that the hospital won't help my little girl and I am responsible for every bit of her safety. The nurse and Dr. Young discussed in front of me how important it is that we get an EEG scheduled ASAP and after several minutes, I loaded back in my car and headed home. 

The day was nothing less than eventful. I ran back and forth between work, home, doctors offices, hospitals, home, etc. I was so tired by the time I sat down - I begged Mady to curl on the couch with me and take a nap. She insisted on drawing me a beautiful picture that I can take to work instead, I settled. I closed my eyes by myself for 15 minutes while Annabelle rested in her room. She was beat by the time I made it home for the third time of the day - we were all beat. 

St. Mary's scheduling called. We have an EEG scheduled for this Thursday beginning at 10am. They worked her in immediately and I am so grateful. Annabelle cannot eat after midnight Wednesday night because she will be sedated for the procedure. The only problem with not eating is that without food on her tummy, she's in pain. Her reflux is so intense she literally vomits constantly until you can put food on her stomach again (by food, we all know I mean formula). Not being able to give Annabelle formula during the night when the pain hits, in the morning when she's starving for that first cup etc is so hard on all of us. I want to be able to feed my baby because it's a natural thing. I want to be able to feed her because she's hungry and I also want to be able to feed her because I know she's in pain. Ugh, it's always tough - that part never gets easier. I know it seems minuscule in the grand scheme of the things we have to go thru, but this is one of the toughest, believe it or not. 

We will need to report to the hospital at 8:30a to get ready for the EEG. The test will be performed in the PICU (Pediatric Intensive Care Unit) which means only one person can be in there with her - which means I will be conquering yet another long medical day alone. She will be put under anesthesia once we are in the PICU and then hooked up to begin the test. It will last anywhere from 3-4 hours before it's over and we should be able to leave once she's out of anesthesia well enough to go home. I don't know much else as to what to expect from Thursday. I hope they give us some more answers or explanation for the seizures, not Mito related. I keep crossing my fingers and praying so hard for something to register a lightbulb for a doctor and they have an explanation for all this that's going on - and it's NOT Mitochondrial related! I want to go back to last week so badly and pray even harder that this was a tumor on her brain, I wish it were and we could have removed it and all this is behind us. The longer I go without knowing what is wrong with my little girl, the more time I feel like I am robbing time from her life. We don't have time in our favor right now. We need answers immediately. I pray every single day we hear something. I pray for answers only right now, I'm not even picky as to what I hear - I just need to know what to expect. The not-knowing is the worst.