K... Were Back :)

Sorry it has been a few since I blogged but it has been quite stressfull since we left. first of all we left on the 7th and had beautiful weather pretty much the whole way until it got dark and we were getting close to grants pass and the weather got bad so we decided to stay there for the night. We were pretty disapointed about not making it as far as we wanted but i apparently cannot see as well in the dark as I used to. Not to mention the fact that Im a huge wuss and am scared to drive fast in daylight, took me a bit to adjust to trusting the road. The next day we made pretty good time and we made it all the way down torwards Palo alto. We had no idea at that point when we would actually make it to town or if we would because again it was dark and totally raining. My wonderfull friends who happen to live a little before palo alto were in contact with us the whole way and informed us that it would not be safe to head where we were going so we ended up going to stay with them. Im very glad we chose to do that because we were exhausted and I was delerious and It was nice to see friendly faces. The next day we got up and had to venture on to Palo Alto for her appt. first of all we really needed sum coffee and for whatever reason there is like hardly any coffee places anywhere there. I ended up having to go to the appt still a little delerious from the trip and without coffee. The appt. did not go as well as I would have liked. I started out by explaining what I was looking for by having her seen there was and I said that Although she is on this diet and it has helped some we dont knoe what this diet is doing to her body and if it may have to do with why she keeps getting sick and why she had to have a blood transfusion and all the blood pressure and temperature problems. He explained that he believed that the part of the brain that regulates blood pressure and temp is the same and he believed Baybes is not working correctly. He said that he doesnt think the diet is causing her illness and that he is happy with her few seizures a day and thinks I should be happy with them as well. He said that this is Baybes "pattern" and that I need ot get used to her being hospitalized all the time and adjust for that, and of course brought up respite care, which means having someone in the house to take care of her or having her put into a perminent hospital. I am not ready to think about either of these things so we moved right along. He decided he would like to make some med changes for her, He wants to completely wean her off of the valporic acid(depakote) which im so happy about. I have wanted that for a while but the docs here didnt want to. Second the want to change her emergency meds to ativan orally instead of diastat rectally which he think may work better for her. Even though she asperates? he swears its only a tiny drop that absorbs instantly and has no risk of asperation. Then he wants me to give her more klonopin at night and less during the day to try and get her days and nights back on track. ( its not working yet) He then explained to me that he didnt think Baybeblue would get much better and that even if we got her seizures to completely stop he didnt think she would develope any faster... I cried hard. I could tell it hurt his heart too. Hes a good man and has Im sure seen parents hearing bad news many times but at that moment i felt like i was the only one in the world going through it. My best friend Hush was there and she cried too. She tried asking some questions too but nothing could change the overall verdict. We should accept and adjust. I do accept her and I will always adjust for her but Im not giving up quite yet. There is one more hospital in St louis and that will be my last opinion. I have decided that if there opinion is the same than I will have no choice but to make some huge changes in my life. I feel like if my life is already planned out for me then there is not much need to go to school any more. I cannot open a gym if my daughter is going to be hospitalized possibly every month for the rest of her life. I cant just start a business and expect others to run it how i imagined because i will always be at the hospital with her! She will always come first and I would have it no other way. The whole thing is so huge and surreal. I cried it out and then decided not to think about it again until I got home. We chilled out the next day and recovered from all the travels, was honestly the first day that I could remember that I had no where I had to be and nothing I had to do but b with Baybe and it was beautiful and peaceful. Oh yeah and we went back to our friends house so I got to be with them and I just had the most relaxing day ever. Meanwhile Baybe started doing this whining thing that kind of looked like those old crying seizures and it started making me very nervous. I gave her diastat when they ended up going on for a half hour or so. The next day we headed out and it was very sad to say goodbye :( And yes i ended up crying again. My friend Hush thought it would be funny to try and make me laugh by video taping me and pretendng like i was crying because she just beat me up. Anyway it worked and although still tired we had every intention of heading out but ended up sitting in a parking lot talking for 2 hours. we got coffee ( which was not easy again) and headed out to Sacramento to meet Hushs friends. These are the people she plans to move down there and live with in a few weeks. The best part was they called before we got to Sac and said they already got us a hotel room and we were all set up. I took Baybe there and hungout for the night while she met up with her friends. The next day we woke up and it was soooo gorgeous out we just couldnt leave right away. It was sunny and warm and I wore a tank top and flip flops :) Now we talked about it kind of jokingly before we left but with all the stress of the trip we decided to actually go through with our plan to get perminent souveniers from out trip. We programmed the Gps to Peircings and Tattos and went for it with no plan. We got there and I decided I would get a tattoo that she gets to pick and she would get a peircing of my choice. I chose for her to get peirced in her face where my mole is to represent me and she chose for me to get a tribal H for hush on the back of my neck. We did it and I love them both. Baybe was chilin in that tattoo shop with us and was cute cause there was other kids runnin around. The guys at the shop were so great. At first they made me nervous cause they were all pretty rough around the edges but they just loosened right up and we all ended up there most of the day hanging out. They were all so curious about Baybe they all wanted to know everything about her condition and how we deal with it. They begged us to come back the next day to there car wash so they could put a temporary design on Baybe but we knew we would be on the road. I fell in love with those guys and they did such an amazing job that I would drive all the way down there again to get a tattoo from the same guy. So yes we took our souveniers and headed out. We then made it to redding and was not about to go through the mountains as late as it was so we stayed the night there. Plus we knew they had Dutch Bros so we wouldnt have to stress in the morn about that. That night Baybes crying seizures got worse and I had to use the last diastat that I brought. I started calling around to find a rite aid locally that I could have her perscription transfered down and I could go pick up some more for incase on the way home. Finally found a rite aid that said that we didnt even have to transfer that it was in the system at any rite aid in the world so i was stoked. Then they informed me that they didnt have any diastat in stock and it would take till monday. I called every rite aid in redding and mt shasta area and none had it. Then they suggested a walgreens or CVS or something like that. i called everys ingle one of those in redding and mt shasta area and finally found one that had it in stock at a walgreens. They then did have to have the perscription transfered because they were not a rite aid. After waiting hours for a call back they called back to tell me that the perscription had been transfered and it was ready but that they did not accept Baybeblues insurance here in California so the cost would be over 900 bucks!!!!!! I was like WTF!!! We now had two options. One was to take her to the Hospital in redding and have them treat her or just mob for the border and hope she does ok. Since I had given her that last diastat she had passed out so we decided to make a run for it. I didnt plan on us making it the whole way since we got such a late start trying to figure that out but atleast we would make it into Oregon where her insurance worked. We drove and for whatever reason I finally adjusted ot california driving right when we got back to Oregon border I was mobbin even hit 80 one time lol. We debated where we should stop with my poor night vision and off n on rain but as we got closer and closer we just wanted to make it home. Also no one was expecting us so we wanted to suprise everyone. We made it home pretty late that night and we were so exhausted. We actually stood outside for about ten min kind of in a state of shock before going in. We decided to be dorks and snuck in the back door and layed Baybe in my bed then snook up the stairs and ran in screaming to scare the crap out of Justin, Ryan and Layla. The dogs went crazy it was hillarious. Atleast everyone was being good and the house was fairly clean, there were no missing or injured animals :) Tired from the trip and a little over socialized I locked myself away in my room for a few days.I knew it would take me a little time to wanna tell everyone what happened and i want to thank everyone for giving me the time i needed. No one rushed me to explain they just let me do my thing and that has to be hard. i would be going crazy like tell me everything that happened now. I will be honest I am a little depressed and I cannot say I fully understand why yet. I know I have alot of stress but for some reason talking about all of this just really chokes me up. The more I type about her the bigger the knot in my throat gets, like i just need to cry/scream to get it out or something. (no im not gona do that for real). Now Im home and have so much school work to do and so many things around the house to deal with. All my bills are due and everything is just kinda off since I left. Just got my room cleaned up after unpacking but still trying to do all the laundry from the trip. On top of everything Im super sad about leaving Joel. Yes I said your name Mr shy guy Joel. I love him very much and think about him constantly. He loves me too and Its just a really sad situation because we live too far apart and have two very different lives. I wont say anything else but that he is very special to me and always will be. I think hes an amazing true person and I think the only person that has ever really loved me for me. I think that the last ten years that we have been apart taught me alot about life and made me truly appreciate the type of person he really is. I hope things workout, I would love to be happy with him, but for now Im focused on Baybe and the other two crazy kids and know in my heart that whatever is meant to be will be. Im also missin a very good friend Jimmy, he is sooo one of the funniest people that I have ever met. I am so sad that I lost touch with these guys, they really are great and its one of my admitted regrets not finding them sooner. Over the next week being home Baybes crying seiure began to get worse and worse. She was waking up every morning screaming until about 11 30 and then she would pass out exhausted for the day. Meanwhile this odd smell that I kept smelling in her poop and on her breath was starting to worry me. i also smelled it near her meds so i started sniffing around and discovered the smell was coming from her vitamins which were actually different than the vitamins she was suposed to be taking and contained flavoring and coloring aka sugar and carbs. This discovery and also her neuro hearing her crying seuzure over the phone prompted a visit to the OHSU ER to make sure she was ok and atleast not in any immediate danger or pain. After 6 hours in the ER they found a UTI. THis could possibly explain the increase in crying seizures as well as the sugar and carbs. anyway we got the correct vitamins and some antibiotics and headed home at 1 am on mardi gras nite. Over the next few days the crying has eased up a bit and now just having her reg seizure type just a little more frequent than normal still. She is so beautiful and amazing and strong I just love her beautiful Baybe face. (sorry, looking at her right now and she is so flipin sweet) She is starting to feel better though I can tell. We went to Taylors basketball game today, the last game of the season and it was awsome best game iv ever seen. last min of the game the score was 35-38 and tays team was up. the other team did some crazy shot and made a 3 pointer and tied the game. then with 3 seconds left Tays little buddy scored and they won. It ws so awsome. The funny part is that I was so excited because I video taped the whole ending of the game and although its not the best qualtiy we now have the memory. So when I got home and was watching the video it seems that when they made the winning shot and everyone was freaking out it sounds like I yell Holy shit. I dont have any memory of actually saying this but I was very excited and I dont know, it really sounds like thats what i say. My friend Hush is going to try and delete that out, but meanwhile it was quite funny to hear. Got Lalas report card and was very please she is doing very well in school and although we have had a few "teenager moments" she seams to be doing well overall. Im slowly getting settled back into my busy life and will hopefully over the next few weeks will be able to get some needed dentist appts set up and docs visits and get caught up on school and back to normal stuff. Also I will be making arrangements to start our moving process. Its time for us to get into a one story house so we can all hangout together. I hope everyone is doing well we love you all <3