Ive tried to keep my journal very to date with everything that's been happening since February 5th but I have been slacking here. Since her initial diagnosis we went on a cruise (kind of insane timing) but it was actually wonderful timing for Mom and Dad too! We got back and met with a Neuro surgeon. We have been so lucky with surgeons who have great bedside manner and not that this surgeon wasn't polite but he just wasn't over the top making faces and joking with Winnie like alot of her other doctors. But, so what! His dad and brother are neurosurgeons so I think he might know what he's doing and that's really what matters! He was all business! He went over her MRI with us while his NP vigorously typed his notes. Her tumor is small and in a great position. Not near the optic nerve (there was a risk of Wins losing vision incase something happened with surgery). It's not dipping into the pituitary gland (that usually causes kids with HH to have percocious puberty). He explained how laser ablation surgery is performed. Overall it takes about 4 hours from start to finish. Putting her out, pre surgical MRI, dressing the room, and post op. But the actual surgery takes one to two minutes. They drill a hole in her skull and laser that baby out. She could be out of the hospital that next day. INSANE right?! They have done a few laser ablation surgeries in Seattle but actually Barrows institute and PCH in Arizona are experts in the HH surgery field and there are also doctors in Texas who get rave reviews as well. We absorbed all the information we could from him but I haven't done a crazy amount of research...yet. I know supressing her seizures with medication is the next step for Winnie. I'm sure if it gets to that point we will be getting second and third opinions and visiting as many doctors/hospitals as we feel we need to.
Right after that appointment we went down to be admitted for an overnight EEG. Have I mentioned how frustrating I think EEG's are? If we waited all day/night for her to have a seizure and she didn't have one it basically would have been for nothing. I will say, though, now that we have found the tumor they were pretty sure they're seizures this was just a double check. The days prior her seizures had been really inconsistent and sporadic so I was feeling pretty hopeless. I haven't prayed so hard for a laugh attack in my entire life. I was constantly begging Heavenly Father the entire day before to make her have a laugh attack during her EEG. Early that morning, when my house was completely silent and no one else was awake, I knelt down in the bathroom before I got ready. I was desperate. I felt like we've seen too many miracles that maybe this time I would need to learn to wait. But I didn't want to wait. I hoped for one last miracle, even though I knew I had a laundry list of them I was still hoping for in the future.
We hung around the hospital and grabbed some food before her test and finally went in. They immediately started gluing the electrodes on her head. What would we do without Elmo, blankie, and passie?! I have been so fed up sometimes with losing passie and feeling like we're so dependent on it that I want to just quit cold turkey and then I remember how many surgeries and things we have ahead and decide it's perfectly okay. It keeps the whole family sane, most times! It took alot longer to get everything placed on her head than last time because they have to glue them on. As long as she had blankie in between her cute fingers and a mountain of distractions she was relatively calm. They put this CUTE rag thing over hear head and the wires to hopefully keep her from grabbing at it. She looked like Rapunzel and was absolutely perfect. She couldn't be very mobile but she sure tried! We had to make sure she was visible on camera at all times. They wanted to watch her behavior if she had a seizure and catch it on the EEG. Again, at this point I'm still constantly wheeling and dealing with Heavenly Father to please let her have one so we didn't stay over night for nothing. And mostly so we could feel peace that they were seizures and they were coming from her tumor. Everyone at the hospital was so helpful! They brought mats to play on, toys, and anything to help her.
Those pajamas!!! They are my favorite things ever. So cheesy but so cute.
Dayton came from work around six with a Rain City burger for me and then he let me slip out to get fresh air and grab a phone charger from his car in the freezing cold. That was the slowest walk I've ever taken. Fresh, Washington air is not to be taken for granted when you've been stir crazy in a hospital room for 9 hours.
She had been coughing for the past day and was super uncomfortable because of it, not to mention she was hooked up to all these crazy wires and not in her own bed. That night was rough and I was really losing hope. Hospital futons are the worst and needless to say Dayton and I were crabby. 10:30 pm rolls around and we were both waiting in bed for Wins to finally stop fighting her sleep and just zonk out. I heard that familiar grunt/laugh thing and hurdled over Dayton so fast. She jerked her head up and I simultaneously hit the button for the nurse to come in while I consoled Winnie through a laugh attack. It was quick. Seemed like 10 seconds to us and I didn't know if it would be enough. I should have been more relieved than I was but I was still pretty pessimistic that we would get the data we needed. After an uncomfortable night I woke up and text my mom. 'I don't think it's going to work. She didn't have another one last night and I'm so frustrated.' I can't remember what she said but I'm sure it was the perfect optomistic response but I was sleep deprived and disappointed so I'm sure I wasn't really responsive to it in my heart. Dayton left for work and at 9am we were just finishing breakfast. The Epileptologist made his morning rounds and gave us some of the greatest news of my life. The seizure showed up on the EEG we could go home!!! The seizure was actually 30-40 seconds but looked alot shorter to us! There were no spikes in the EEG on the off seizure time which means that she is at a low risk for developmental delays. I almost fell apart in front of him. I was so proud of Winnie in a weird way and also immediately guilt ridden at my complete lack of faith. Even recounting this makes me emotional. I called Dayton, estatic, and we got ready to be discharged!
Over the weekend we anticipated her Epileptologist appointment with Dr. B so we could start medication. We did the normal routine of getting weight, height, head circumfrence, and all the fun terrible things Winnie hates. She waves bye as soon as the MA comes in the room and says 'Yay!' when they leave. haha Dr. B is so wonderful!! She's this sweet, well dressed, Asian woman with a ziploc of small toys in her purse. Smart lady! I fell in love with her!! She was so thorough, as is every doctor Wins has. Within the first two minutes of sitting down she bodly leaned towards Winnie having Pallister-Hall which didn't come as a surprise to either of us. She wrote referral after referral to make sure every avenue was covered. She decided to put Winnie on a medication called Keppra and slowly increase her dosage over the next couple weeks. To my understanding, we should know after a few months if medication will be enough to stop the seizures.
Over the past couple weeks things with her seizures have been ok. She still has them almost every day but it varies to every day to once every 3 days or so. They're spotty and less than normal but still not the results any of us were hoping for. We met with Dr. B again just a week ago and went over the detailed log of seizures I've kept. Time of day, how many times a day, and anything else odd I notice. She seemed just as disappointed as I was. She consulted with me and wondered if I thought her side effects were too severe to keep increasing doses. The hardest side effects of this medications is Winnie's mood. I've forgotten what her normal tantrums are and I'm having trouble determining if I just have a normal two year old or if her meds are making her grouchy. It's been rough. Her mood changes so fast and I have to chase her around the house and force her to hug me because she hits, yells, grunts, and really just can't control anger. The trade off with upping her dosage is yes, we get rid of her seizures (hopefully) but in turn we have a terribly behaved child. Dr. B was very clear to not increase if her moods are too much to handle. So here we go! We're looking for a balance on what we can all handle as a family and getting rid of those seizures. One of them the other week was really painful to watch. She was in her high chair while I was around the corner and I could hear her start to have one. There wasn't much laughter but just blank stares and a small smile. It was so different than alot of her other ones and I'm not sure why but it hit me like aton of bricks and I sobbed at her side. Poor thing. I've read a few things about people who have seizures and most times they don't even remember they had a seizures seconds after it happens but I feel bad for her and hope she isn't too scared when they happen. All these appointments and test were back in February so I'll try and update on her other appointments and throw in some happy posts in between but this is actually a pretty happy post to me. We've had so much good news lately and the sense of making headway is so comforting.
Easter was yesterday and I would feel selfish if I didn't post about my thoughts. We spent it at home just the three of us and one of Dayton's buddies. It was relaxing and simple. I cooked an amazing meal! I can say that because I am really proud of it and worked really hard to make it perfect! Selfishly, I have found myself acknowledging outloud how far I've come through the experiences since we've had Winsley. I was thinking about how great life has been lately. And when I really broke down what is happening in our life I thought about how much actually isn't going right. We are not without trials. We are not without heartache every time Winsley has a laugh attack. But I'm able to say, and genuinely mean, that life is wonderful right now? These difficult times aren't breaking me like they used to. I think that's how I'm gauging my growth. Had everything happening been a year ago or even 5 months ago I would have been a wreck. This is more of a personal journal thought, I guess, but it's been a good relization for me. No point in going through hard things if you can't pinpoint what you're learning. Right? Holiday's with our extended family are always special. But holidays at home are something else. The "Easter Bunny" Easter was great and I loved hiding and preparing our Easter baskets but it was nice to having nothing on our schedule and focus on the principles shared in
General Conference.
