Planning Baybeblue's Birthday Bash!!

Wel would like everyone to join us in celebration of Baybeblue's amazing life. We have been through so much and you have all been by our side in spirit. Your prayers and wishes have brought us to a place where we really have alot to celebrate. 6 months ago I didnt know how long my little girl would live and now she is going strong and healthy and YAY!! We will be at Pietros Pizza in Milwaukie Oregon at 6pm on 1/11/11 and anyone and everyone is invited. We will also be collecting donations for Doernbecher childrens hospital and will be makin a donation to them in Baybeblues name as a thank you for all they have done for us. Please spread the word and help us make this the biggest best birthday celebration a little princess could ever have. We have never been able to have a party for her before so this is a big deal for us. Please dress all in Baby blue clothes and help us spread awareness and tolerance of childhood disablities so our kids can get the attention, and services they really need. Thank you so much and hope to see everyone there.

P.s. Any businesses that would like to be a part of our celbration and make a donation to doernbecher would be so greatly appreciated. Please contact me for anymore information at d_fabu_lass@yahoo.com or visit her event page on facebook at

http://www.facebook.com/connect/uiserver.php?app_id=113556445341048&next=http%3A%2F%2Fapps.kudosmedia.net%2Fhoroscope%2Fprod.php%2Fhoroscope%3Fref%3Dnf&display=page&locale=en_US&perms=user_birthday%2Cfriends_birthday%2Cemail&return_session=0&fbconnect=0&canvas=1&legacy_return=1&method=permissions.request#!/event.php?eid=173241206040382

Baybeblues New Tribute Video

Made by my Big Sis Mary, THank you so much!!

Enjoying every good moment

Well we have been out of the hospital now since before August. No more injuries, illnesses, or broken bones thank goodness. Basically what has been happening starts out with the fact that the last two meds that they had Baybeblue try was the lamictal and the zonegran. AND those meds did nothing but increase her seizures to the point where she was having 40 plus seizures a day. As soon as we knew the meds had been on board long enough to help if they were going to then we removed them. This now left her on only the 3 doses of clonazapam a day, and also some other suppliment type meds like ranitidine for refluxe, faradantin for preventing bladder and kidney infection, potassium, and a very small amount of vitamin D. I gave it a few weeks and Baybeblue was screaming and crying and seizing for hours everyday. I started calling the neurologist to see what the next step was going to be. I told them that since the last two meds were kind of there last option ideas that I was interested in starting the process to go see a new neuro at a new hospital that may have some new ideas. They told me that since Baybeblue has had a second opinion before that this would be difficult to get the insurance to agree with. They then told me they would talk and call me back with info on what to do. After waiting another week and watching Baybe suffer waiting for them I decided to try my own theory. Since it seemed that every med we tried seemed to increase her seizures and everytime we removed one she got better, I wondered what would happen if I removed the last med...the clonazapam that she had been on since she was 2 months old. So I decreased it first by removing the mid day dose, I immediately saw a decrease in seizures, then I removed the morning dose and for the first time ever Baybe actually went several days without a single seizure. Stoked by this info I decided to take the last dose very slowly. We spent a week enjoying our new reality of alertness with Baybeblue. Not on any sedating meds during the day she was alert and happy and singing n dancing in the car, trying to get up, demanding to be held. I had already done all the research about withdrawing off of clonazapam and no that there are risks of doing it too fast so I watched closely for any symptoms and just took the last dose off very slowly. She even came down with a bad cold and although normally this was something to freak out about, and I did a little, I took her to the hospital and they gave me an inhaler for her but said she was fine. Off the meds she is stronger and was able to fight off the cold on her own outside of the hospital. Then she had a few days of increased seizures, of course again I thought the worst but after doing like 50 full examinations of her I found that her very back molor was trying to bust through the surface and her whole gums were swollen up like a big bubble. A little anbesol and problem solved. So now she is done and off of all the meds. She still has a few seizures a day but they are isolated and she recovers quickly and doesnt seem to be too affected by it. The benefits right nwo far outway the negative. She is so happy and alert it is amazing. She watches me walk around the room, she recognizes her favorite people and she is trying so hard to get up and talk. Yesterday she got a new walker which we havent used for a while because of her bones. But even the therapist says that it doesnt make sense but her bones seem to be stronger too. Then while laying on the bed the therapist rolled the ball to her and said throw me the ball and Baybeblue rolled it back to her, it was soooo awsome. Since then she played with the ball all night and has been rolling it ot me all morning. What amazing concentration and commitment. Her tooth is better and her cold is better and she is stable and happy. We had our most recent calcium check a week ago and havent heard anything back which is a good thing. If its bad they call me that day. So even though we are still on a mostly saline diet she is stabel with her calcium too. Now we wait for endocryn to figure out when n how we are going to start weaning her off the saline so we can see if the calcium spikes again. Other than that life is truckin right along.

Lala and Taylor are doing great, full of drama but great, lol. Taylor is the little ladies man. Either its a great day because he didnt get in trouble and he has a new girlfriend, or its the worst day ever cause he broke up with his girl and got a dragon ticket :(. Either way he is healthy and has every reason to be happy. Lala is about the same as well. Friends rule her life right now so she pretty much spends her days cleaning her room so she can have privilidges. SHe had goten a bunny for her bday from my good friend Tracy and her family. It was a great gift and the bunny was already grown and fixed. But with a few weeks we realized that the bunny hated everybody and didnt like to be loved or held. soooo we gave the bunny back and got the two cutest bunnies in the entire world. They are dwarf long fluffy hair cute as heck babies. Everybody is very happy about them except tay who now wants his own bunny! NO!! Taylor is starting basketball right now, and Lala has decided to take a break from Dance and is now talking about wanting to join a cheer squad so were looking into that.

Me, Myself, and I... Im doing pretty well actually. I met someone new, well kinda new. He is someone that I have been friends with for a long time but we never really thought of eachother as more than friends. We started hanging out a little bit and he asked me out on a date. Before we could even go on a date I said actually I need someone to take me to my sisters rehearsal dinner and wedding... So for our first date he got to meet my entire family and be my date with alot of people watching lol. I cant imagine how nerve racking that would be with my family, they are wonderful amazing people each one of them so that can be overwhelming. Kevin did amazing he made good first impressions and everyone fell in love with him. Even my Dad likes him and that is the first time that has happened. So far things are going great, it has been a month since the wedding and we are still dating. He is a machine designer for his family company and also a photographer on the side which is soooo fun. He is very smart and funny and full of energy because hes um 22. Yeah hes 10 years younger than me but he is possibly more mature than I am. The kids love him and he has really brought something extra to the table in this family. LITERALLY since he is an amazing cook and has ben cooking me dinner almost everynight. The kids even love his food which is huge cause they are very picky. He has totally bonded with Baybeblue, All I wanted was someone who acknowledged her when they walk in the room and he goes far above and beyond. He loves her and plays with her and actually understands her. Im not saying that I can predict what will happen in the future, but this is pretty much a miracle that I would find someone like him. I will be cautious and careful and at the same time enjoy every minute of it, because I have been through so much with men and I so deserve this. Thank you Kevin for coming into our lives and showing us what love from a man is suposed to feel like. Not to mention how cool it is to have someone to share with everything that is happening with Baybeblue. Ill add a few recent pictures, Im sorry its been so long since I blogged, I wont wait that long again, but the distraction has been a good thing :)

Thank you Lauri :)

I have been a little off my game lately and I know I havent blogged in a while but I got a very beautiful message today from an old friend Lauri and she totally gave me the motivation I needed to share what is going on. Things have been really very bad lately. The hypercalcemia never got any better. We bounced back and forth between the hospital and home each time trying something a little different. We bumped up her fluids as much as we could to flush out the calcium and when that didnt work we changed her regular water to saline water in her formula. When that didnt work we changed her formula to a no calcium type called calcilo (go figure huh) and still her calcium level kept coming down and then a few days later it would be right back up. They then decided that her case of hypercalcemia was rare enough that they would contact the number on endocrynologist and calcium specialist in the world. His recomendation was that one child in the entire world had this before and she was on the ketogenic diet as well. He said to try removing the diet (which is the only thing that has given baybe seizure control) and try a suppliment of the hormone calcetonin. This is a hormone that your body produces but his theory is that maybe in these two cases the ketogenic diet had caused there bodies to stop producing the hormone. So they snagged a bunch from some salmon ( thats where they get it, salmon produce a large amount of calcetonin i guess) and I had to give her injections at home in her thighs and arms 3 times a day for several weeks and still nothing no improvement. She was at that point on a diet of almost complete saline and a little calcilo so her calcium was being flushed out continuesly and her calcium level was still riding just below a harmful level but was still high. At this point they told me that there was nothing more they could do for her and it was time to wait. I knew now that we were at her maximum volume of fluid so if the calcium rose again there was nothing more we could do. I decided completely against the dangerous med they were thinking about giving her, I found out that basically it would aggresively drive the calcium back into her bones but that once it was administered it would continue to do that for the rest of her life. This would fix the hypercalcemia (high calcium) and eventually cause hypocalcemia (low calcium) and would be irreversable. They explained to me that the hypo-calcemia is much more dangerous than the hyper-calcemia and is extremely dangerous for kids with seizures. Im not sure how anyone could think this was an option but I am just sick of her suffering. I had to do alot of soul searching at this point. I sat the docs down and told them I wanted to be told the truth and the whole truth no matter how difficult it was I needed to know if she was going to live through this if it didnt get better. Sad to say they couldnt give me any answers. I told them I didnt want her sitting in the hospital hooked up to machines to be how she spends the end of her life so they needed to help me figure it out. That day I started having some strange but overwhelming thoughts that had been building in the back of my head come to the surface. I dont know where the thoughts were coming from but they had to do with God and my own faith and my understanding of both. I just was overwhelmed with the prospect that maybe I was completely going against gods will by fighting this so hard. I felt like the times she has hypothermia and blood pressure problems and the blood transfusion, we never found a cause for any of that and it was only coincidence that we even found the problems. I was bringing her in for other things when we found them. I went from coming to the hospital cause i ran out of ketone checkers to being rushed to the ICU with her. Now this. I thought she had pneumonia thats why I brought her back to the ER 3 times and looked crazy and thats why they did a full blood panel to show me she was fine and thats when they found the hypercalcemia. Not because she had symptoms, just by chance. She could have died. Was that gods will and I keep freakishly stopping it. I couldnt help but ask myself if everything people say about god is true than do you think he wanted little beautiful babies barely staying alive by tubes and machines and heacily sedating drugs. Is modern medicine possibly crossing the line and refusing gods will. Am I making her suffer when she could be at peace somewhere else? These thoughts started to consume me and the headaches took what the thougts didnt. Then the craziest thing happened, my friendly faced hospital priest came walking through the door. He asked me if I wanted to visit with him and I just lost it. I said yes please I have somethings to ask you and talk about. This sweet man has been coming to see me n Baybe through all her issues and he prays with me and gives me communion and always makes me feel better but this day I laid a huge load on his heart. I told him everything and we both cried. We prayed and we talked through it. I asked him if he thought that god was doing this so that i could show my strength and encourage others to do the same? He said no god does not do that. I asked him if he thought that it was gods will to take Baybeblue, he said that he thought that no matter what eventually whether here or in heaven Baybe would be ok, it was me he was now concerned about. He said he thought that I should talk to another priest, the one he talks to from his church here by the hospital. I spent that whole day in termoil, i cried nonstop it was so intense. This beautiful women showed up that I had never met, she was a friend of Donna's and was in her prayer group, when I saw her i hugged her and we also sat and cried together and prayed for Baybeblue. My parents came, and all of her other granparents came and then the other priest came as well. I asked him the same questions I asked the other priest. His responce was this. he said that in life we often want to find a place to put blame over painful things, but God did not do this and he is not controlling what is happening. He said that if it was 100 years ago Baybeblue would already be gone, that it is humans that are changing the world and saving lives, but that the answers that I was looking for were inside me not him. He also expressed concern over my well being and said that the only choice to make was whether or not to put it in Gods hands or not. I talked again with the Doctors and even though they told me the calcium was staying strong at its posted high level, I wanted to take Baybeblue home where she is happy and theres no strangers or needles and put our faith in Gods hands. That night my beautiful prayer angels came to me and they healed my heart. Donna, Tracey, and Cynthia, 3 of the most amazing people I have ever met in my life. They sat with me and we cried and we laughed and we prayed ( and we all tried on big girl diapers)..(and theres a pic of that somewhere) and they actually prayed with me until midnight that night. I was so exhausted in every possible way at the end of this day, but woke up in the morning with energy and was ready to take her home and enjoy our life together. Theres one more peice to all this and that is my hero behind the scenes through all of this Jimmy. He was a good friend in highschool and an amazing friend to me now. Since I had been going through all of this with Baybeblue we seemed to talk more and more. I have never met someone that could literally take me from a full rage to smiling in under a minute. He knows exactly what to say to me to make me laugh and exactly what not to say to make me mad. I truly thank GOd for him everyday, I hope I can repay him someday for all he has done for me.

I took Baybeblue home and I swear that she woke up in the morning and was a new Baybe. She looked at me and smiled really big and started trying talk. she was active and happy and huge eyes looking at everything. She started trying to sing in the car with me and was gettin pissy about wanting bites of stuff, it was just overwhelming and amazing. She was using all of her signs like I love you, and waving hi, and blowing kisses, she even was trying to sit up and figured out how to crawl across my bed, well out of her bed area into mine. The only negative thing in our whole situation was the nonstop pee from the saline in her formula. Then a few days after being home, after researching like crazy I decided to go through all of her meds again and check them for possible links to hypercalcemia. Sure enough within a few hours I found that one of her meds levocarnitine actually has a side effect of hypercalcemia. I freaked out and of course it was like 1 in the morning so there wasnt a damb thing i could do or anyone i could tell. First ting in the morning i called the hospital to tell the docs and that went terribly. It was the weekend so there was no one there with the authority to talk to me about it, they had no idea about the medicine, and told me not to take her off of it until I talked to the dietician and other docs when they come back on monday. SCREW THAT!!! there was no way I was going to keep giving her a med that could potentially be causing all these problems in the first place. I researched the med more and made sure it wasnt something that would effect her if I took it away. It basically was something that was added to her meds to help with her muscle tone. I went to the pharmacy and talked with our pharmacist and asked him to look up the med for me and check for any negative reasons not to just take her off, like whether it needed to be weaned off or whether there were withdrawls and there were none, in fact it stated that if there were any negative side effects than you should discontinue the med immediatley so I DID!! A few days later Baybeblue started having increased leg spasms and also an increase in seizures had been happening since we had been home so I took her in for a check of the calcium. I actually was thinking that it either was up really high again or that maybe i fixed it and now she had low calcium form the saline. But no the result was that the calcium was the same, sitting rite below unsafe but still high. I just cant believe she is living off almost pure saline and still the calcium is sitting high this doesnt make sence.

Things were going great at home she continued to become more alert and communicate more and more each day and then all the sudden she started crying. she cried for about an hour and i did everything I could to calm her and nothing worked so I took her back to hospital again. I was sure she either had a kidney stone or was constipated bad, either could happen from the hypercalcemia. They did ultrasoung and xrays and blood work and... NOTHING. there was absolutely nothing wrong with and the calcium was still the same, high. Relieved and confused we went home again. The next few days were amazing we hungout in the sun, Bayabe got a tan, we did yard work, hungout with my 3 babies and just loved life. Then the morning of thursday the 17th came. I had been up all night with a tummy ache so we decided to be lazy and stay in bed all day which is baybes dream day. we played and smiled and snuggled and then she started to have a seizure. this was nothing abnormal she had been having about one every 30 min or so, I scooted close to her and layed over her, rolled her on her side and was patting her back when she clenched up and started screaming. Sometimes she does this during seizures but this was different. I had never heard this cry before. the seizure was over but she continued to scream, i sat up and saw that i was laying over her leg so i thought maybe i had twisted it or something when i rolled her on her side, I started moving her legs to see and her right leg would not kick me like she always does, it felt weaker than the other one and when i bent it up she screamed louder so i grabbed her and we rushed to the hospital. I told them everything that happened and they rite away tried with some pain meds and nothing helped. They took her for an xray of the leg that i thought was hurt and we waited. She was still screaming at this point they tried 2 doses of phentenol, 3 doses of morphine, ativan to calm her and still screaming. The results came back, her femur was fractured, and I lost it... They all comforted me and thought i was crying because i felt bad that i did it, and yes of course i felt sick inside over that, but also i was instantly flashing through my mind that this is the beginning of her deterioration. If her bone could break that easy than soon I may not be able to touch her, and this is how she was going to spend the end of her life, in pain, that is devastating to me. Her quality of life is now 0. she is in so much pain that she is not aware of her surroundings or me at all. I cant comfort her cause she hurts to bad, there is nothing i can do to make her feel better. No Jello or whip cream would ever make this better. I was so sad for her, I was going to take her to the beach next week for some pool therapy and palying in the sand she so would have loved that and she would have been so happy, now she is stuck in a huge cast through the summer and wont even enjoy another day. They had to hospitalize us because we are still at this point unable to control her pain. All say today she has had tons of morphine and percocet and ativan and valium and not one minute of rest. This morning she was actually kind of peaceful but they came in and said that her leg was in a bad position that showed up on the xray so they had to remove her cast and put on a new one. After that she was so upset that she hasnt calmed down. i finally asked them to try switching the morphine to dilaudid and she seems to be calming down a bit now, maybe even get some rest tonite. On top of everything because of the pain meds she is back on oxygen unable to maintain her breathing on her own. without in on she drops fast. she is getting all congested from the meds too she has lost her swallow again. I am hoping to get her home as soon as possible but we are dealing with some harsh reality today. I got to talk to every doc i wanted to and ask all the tuff quesetions, how long can someone live on saline? how long can she live without any calcium in her bones? NO ANSWER no one ever has so they have no idea. I asked if they thought her bones would start weakening so fast and they said no this was much fster than they thought. I asked if we should start watching for other signs of renal failure and what not and they said not yet, that all her bones would go first. I cant even imagine the hell this little girl is going to have to go through and how long it will last no one knows anything!!! I dont kjnow how Im going to pay my bills and I dont know how Im going to hav summer with the other two kids and I had to drop out of school and everything is falling apart around me and all I can think about is her. How can I make everything perfect for her so she doesnt have to be upset or feel pain or go through anything else. I will have to be so careful and I wont be able to take her anywhere. My whole life I thought was already turned upside down is now REALLY upside down. I am prayng at the top of my lungs please God do not make this little angel suffer anymore, there is no way she deserves this, no human does. I love her so much I would give my own life, please just take away her pain it is not fair or just or purposeful in any way. I would do anything for this little angel, she has saved my life and so many others, she has made me the person I am, she gives me strength, Please just let her feel peace and love that she deserves every second. Im sorry for all that but I am so helpless rite now. Please everyone tell everyone you know, pray for my Baybeblue, pray for her to have peace. Thank you I love you all, I will post again as soon as I can.

Hypercalcemia=word of the day

I am going against everything I have been telling myself, I was not going to let myself blog until i got all caught up on my school work (which I am not) but there is just so much going on that I had to get some of it down before more happens. We ended being hospitalized last time for 25 days. She was on oxygen and having some respitory issues but mostly it was about the calcium levels being too high and the creatinin levels showing danger to the kidneys. We flushed her with tons of water and lasix and it just kept coming back. Meanwhile I woke up coughing and feeling like I got hit by a truck and had a fever even so I went to get checked out and turned out I had pneumonia and a zoster in the middle of my forehead AGAIN!! They gave me antibiotics and antivirals and I just felt terrible. I wanted to curl up in a ball and disapear but I still had to have my focus be on her. Not to mention my schoolwork that I could not even look at because I felt so bad. I just kept putting it off and putting it off and one week of late work turned into two really quick. Meanwhile Baybeblue was slowly but surely getting better. We basically needed to get the same amount of fluid that was going through her IV to go through her gtube to keep the calcium down. The only problem was that we were running at a rate of 45 ml an hour and needed to get to 74 ml of food per hour with like 600 extra mls of water per day. Everytime we tried to bump her up a little she would throw up because there was too much liquid sitting in her belly. Her body was just not digesting it fast enough. Puking is really bad for her because she asperates but the Docs didnt seem to think that it was too bad because she hadnt asperated one bit of it. My thoughts were immediately WELL if you are not worried about her asperating then she should be able to have jello by mouth again RIGHT???? So yes the said that was valid and Baybeblue got her Jello back in her life. 6 months without a drop of even water in her mouth and now she can have any flavor she likes. So far lemon lime is one of her favorites ( sugar free of course). Then I started to get sicker, I started coughing up more black stuff and now was having stomach pain that felt very much like a kidney stone, again I went to go get checked out and although thankfully there was no kidney stone, they did say that my pneumonia got a little worse so maybe that was causing me pain. Then the next morning the docs came in to talk to me and woke me and I instantly felt like I was sleeping on something sharp on my head. I sat up and felt and nothing was there, thought maybe my pig tails I was wearing were too tight so I took them out and tried to lay back down. All the sudden the pain was overwhelming, I sat up and grabbed the first thing i saw and started throwing up. The pain in my head was so intense it felt like someone hit me with a baseball bat. This was not like any of my other migraines or like any pain I had ever felt before, It was sharp and I couldnt even hardly talk. The nurses had to put me in a wheelchair and rush me down stairs crying hystericaly and throwing up non stop. I got to the ER and they did a cat scan which looked ok so they said they would need to do a spinal tap. I remember deleriously that I was trying to talk them out of doing it, I tried explaining to them that I was too scared and that I would probably freak out if that happened. They then explianed ot me that I could have menengitis or bleeding in my brain and it had to be done. I reluctantly said ok and I think I even signed a release of some sort but shouldnt have been allowed to because I was already sooo out of it. They set up all the supplies and told me they would be numbing the area and that he ( the Doc ) would be instructing a student through the process. I started freaking out saying no that I couldnt, that I would loose it. I told him I have anxiety and even if I say its cool I could still really freak out. He didnt listen and I sat and listend to him instructing the student about checking hip bones and drawing a visual line to the spine and they were poking me all over and then they did the first numbing needle and it hurt so flipin bad!! I started crying and then they did more and each one I got more and more upset. Then they said it was time to do the tap. I could hear and feel the student trying to figure out where she was going to stick the needle in and it was suposed to be numb but holy crap she stuck it in and I felt it hit the bone and then she tried to wiggle the needle in between and I felt it grinding the side of the bone. She said nope I hit the bone and he said pull it out and I flipped out yelling and said that I didnt want her to touch me again that I was not ok. Then the doc demanded that I lay back down in the fetal position with my back curled out but I couldnt do it cause I was so scared that my body literally would not let me push my spine out there. It was like telling a kid to hold out there hand so you can smack it times 1000. My Dadddy showed up right then and I yelled for them to bring him in. They also got some big guy to hold me down. The weird thing is that my memory of the whole thing doesnt involve any faces because I was so messed up from all the Dilaudid and versed they had already given me. ( obviously the versed didnt work cause I remember it all... I think) anyways... So the big guys holding me in the fetal position and my Dad is holding my upper body and my hand and He kept saying watch your little pocket which at the time I had no idea what he was talking about but later realized there was a slit in my fricken gown rite over my boob where a pocket would be so I was pretty much exposing myself. The Doc went to try again and when he poked the needle in I jumped out of the postiion and screamed, "I thought It was suposed to be numb!!" Then I tried to sit up and yelled at him if you want me to lay still why dont you just flipin knock me out already, the Doc gave a head nod and said some medicine name, boom in my IV and OUT!! The next thing I remember is hearing the nurse saying my name CYNDY I woke up and she said ok just needed to make sure you could wake up and then she told me to go back to sleep. They then came and told me that there was too much pressure on my brain which is what had been causing my migraines and this headache I had today. They needed to do some more tests and then I would need to see a neurologist to find out where the pressure was coming from. The last test ruled out eye hypertension as a cause so time to get myself to the brain doc.
Another couple days in the hospital to make sure Baybe was tolerating her feeds and boom she comes down with a new fever. Now there thinking that she had caught whatever I had or that she had goten the zoster virus from me which makes chicken pox in little kids. So we got moved to isolation room and waited for all new blood tests. No rsv and nothing serious and the fever resolved on its own. What the? once again we have no idea what that was about but she was doing great and after a few more days in isolation we were ready to go home.
Everything lookin good we headed home on a saturday just in time for the huge family poirtrait that was planned for Sun. We barely made it, but we made it. The next week I spent trying to catch up on all my bills that were due and my school work that was so far behind. I had a couple great days with the kids all together we had a good bye dinner for my best friend Hush who moved to California. She was the one that traveled to California with me and Baybe. we just hungout and all soaked up being together and things were slowly getting back on track. Baybe had her first calcium recheck one week after we were home and it was great, pheww we made it a week home and shes looking good this was a great sign. We had a wonderful gift from my Angel friends Donna and Tracey. They came and brought pre made meals for us for the next week so I didnt have to cook, god I love them and I am so lucky to have met them. And the food was wonderful :)The next week Taylor broke out in a Rash and started his new darth vador breathing and severe night time snoring and lala broke her baby toe at school. After a trip to the Doc for each of them, Lala got some foot wrap and an excuse to not clean her room and Tay got antibiotic cream and has bad allergies so will hav to take zyrtec now and do nasal cleanse stuff. I also decided this would be a good idea to start them on some vitamins so Flinstones it is :) There like who are the flinstones?? Im like... shut it!! anyway. I ran into a couple little snags with my own medical issues and still having the headaches and my back still hurts really bad from the spinal tap. I went to the Doc for my symptoms and they actually had attitude with me because I went to the ER while hositalized with Baybe instead of calling them. I tried to explain everything that had been happening and they did not care. They said the insurance was giving them a hard time and that if I wanted to stay with there office I had to come see them before I go to the ER. I explained this wasnt possible when i am hospitalized with her and told them Peace out!! My brilliant plan was to get a primary doc located up at OHSU so that since Im always here, I can just see my Doc here, After spending a week trying to find one I found out that none of them are accepting OHP patients so im pretty much screwed now. I think there should be a Doc that specializes in working with parents like me that run off our kids medical schedules not our own. I really dont know what I could be doing differently. I just dont have that kind of time I need for myself rite here rite now.
We had a wonderful visit from my aunt Michelle and cuz Katie and I got to meet her little man Ryder, he was soooo cute. Had a great evening with my Daddy and Sista lissa but Baybe started to act a little fussy which was out of her normal so it kinda weirded me out. Then I noticed some little tiny leg spasms. This is what happened before we were hospitalized last time. In my heart I knew it wasnt good. The next morn was Monday and I called to let them know that I would be bringing her in for a blood draw but that i would need a doc to call me rite after because I was pretty sure the calcium had gone back up. I had to get Taylor from school at 2 so I waited till then and headed up to OHSU. We did the blood draw and then we had to rush home to go get Lala and wait for the phone call from the Doc. Got Lala and then the phone rang, the Doc said that I needed to bring her right back in to be admitted immediately. I got on the phone and got Lalas grandma Pam to come get her and get her to school and got ahold of Tays Dad and he came to get him and we headed back. Today is now Tuesday and we are here stuck now until we get to the bottom of this calcium issue. Hypercalcemia- with no known cause, no calcium intake, we have flushed and flushed and still keeps coming back, her thyroid is fine, her parathyroid is fine, vitamin D level fine, everything is fine but the creatinine which shows signs of kidney stress is elevated too. Im not sure what is going to happen now but we have to fix it. Pretty positive at this point the only place the calcium could be coming from is her bones so that is now a huge concern. Our options are to flush with tons of water and now we have added saline to her feeds. next step will be possibly removing her from the ketogenic diet, and if that doesnt work then we will have to try some medicines that will reduce the calcium but they will also cause potentially dangerous side effects.

Day #11 hmmmm

So last week we were waiting on the results of the test for her kidneys. I got to stay in for the test and even though i conented for sedation and the nurse was there ready, we never even needed to use it because she was so out of it. They emptied her bladd completely first and then with a catheter began to pump dye into her bladder. On the screen we could watch the liquid going into her bladder as it got bigger and bigger. At one point they mentioned that they were at the normal size of a bladder in a child her size but the liquid kept going in. The image of her bladder literally blew up into the shape of a giant alian head inside of her and when they wer close ot capacity the worst thing happened. The liquid from her bladder went back up into her kidneys. This is what the test was watching for in the first place so it was confirmed that she is most defenitely refluxing urine back into her kidneys which is realy realy not good. At that point the fact that her bladder was atleat twice the size as it should be was also determined. Once they had enough image it was time to wait for her to pee, and she refused. they ran water and even poured warm water over her but nothing worked. I lifted up the blanket to feel her belly and was shoced that there was a huge deformity sticking out of her like she was pregnant with a road cone. They told me not to touch it cause it would make her reflux worse. Eventually they had to use the catheter to drain the liquid, she never peed on her own. This explains why her bladder is stretched to twice the size becaue she is holding it so long that its stretched it out and obviously so far and so hard that the pressure inside is causing the urine to push its way back up. Again it was time for me to sit and wait, even though I stayed for the procedure so I already knew the results, officially I needed to wait for the Docs to come and relay all the findings. They came and asked me millions of questions about medical history of myself and out whole family. They explained to me the danger of having bacteria that could enter the bladder and then during reflux it would then go into the kidneys causing infections, damage, scaring, and eventually long term kidney problems. The next step involves many more tests on now each specific part of the Urinary tract system to determine where exactly the problem lies. i will explain each test more specifically as we come to that point. For now they are concerned with her not emtying her bladder for discomfort reasons, further damage, and also that it could be a sign of many other things. When the Urologist team came to physically examine Baybe they also found several abnormalities involving her lower spine and her rectum. First of they did a rectal examination and she managed to poop on every blanket, her teddy bear, and 3 of the top urologists here :) thats my girl, bet they wont forget about you!! after cleaning her up they told me that the things that they found are going to have to be checked out with an MRI of her lower spine to determine if this abnormality is responsible for the urinary issues she is having. THey also said they she has 0 muscled in her butt so she would need ot go on miralax starting right away and everyday from now on, as well as profolactic antibiotics everyday from now on to prevent any future infections until we get it all figured out.

Other than all that Baybeblue has continued to have mild low grade fevers between 99.0 and 101 and seems to have sum level of discomfort ranging from irritated to miserable. Her respitory is doing a little bit better although she still has a nasty sounding cough, she is off the oxygen for the most part. She has required it several times off and on but only for a short period of time and once at night. Her tummy has been causing some issues now she has thrown up several times which is really bad because she asperates and when i vent her belly ( let the air out) clear fluid has been pouring out large amounts. they have no idea what this could mean because the liquid doesnt even look like formula and shes never suposed to have that much liquid in her belly at once. THis is why she is on continuous feeds at a slow drip so there will only be tiny amount in there at once incase she vomits there wont be that much that comes up. We are still in the process of trying to figure that out but the problem lies with when this happens i wanna reduce her feeds but we have to keep the fluids high because of the calcium, which is the next subject to deal with.

Her calcium after pumping her full of extra fluid belly and IV and giving her lasix tha cleans you out, she finally came down to a normal level. We then waited until fri patiently to retest and hoping that issue was resolved we were saddly disapointed. Yesterday her calcium went back up and today it went up again. NOBODY has any idea where the calcium is coming from there is none in her totally controlled diet and everyone is trying everything they can to figure it out. Again like i stated before our goal is to get the calcium out and keep it out but the main thing is that we need to know what is causing it cause that could be serious. We are very disapointed about the calcium situation because we are basically starting over with that problem. I cannot go home until this is solved because she cant have IV fluids and lasix at home. For now everything is still up in the air and very frustrating. I am trying to keep it together and look positive but things are starting to fall apart as usual. I dont have my school books again and I have to go get them today but dont think anyone is coming here. I have to figure out where the kids are going to go for easter today because they were going to go to my parents but my poor Daddy ended up in the emergency room last night having severe pain in his knee that he had surgery on already. I was really hoping that they would be together in the morning but its not lookn like it now. Taylors Dad wants to have him for some plans they have and although I am reluctant because of how he has been acting lately, I dont have much of a choice at this point. Layla I think might go with my sister or her grandma, sucks i cant be with them I have never not been on easter and I used to have all these fun traditions that have now kinda faded due to us always ending up apart :( Im stressed about bills that always seem to pile up while im in here and school and my house and my puppies, thank goodness I have so many people that love us and help us or our lives would be in shambles.

I had Lala n Tay come stay up last night for a slumber party and it was fun, we worked out and played video games and watched movies, dinner and hot chocolate and lotsa time to just be together and I loved it. Baybeblue was super happy to hear her big brother and sister and I got sum super cute pics ill share. For now looks like we will be dealing with the calcium and the tummy issues through the weekend and then will be doing the MRI on monday. Also because of her issue with peeing regularly enough on her own and the not emptying the bladder all the way we now have to use the catheter on her 4 times a day and looks like i will be trianing to do the cathetering at home as well :( really not looking forward to that. I will add mroe when I can love you all, stay healthy and love and appreciate your family and children :)

Doernbecher day #7 so far....

Yes things were going pretty well there for a minute, but we are back in doernbecher where we have been chillin for a week now. It all started out with Baybeblue spittnig up and asperating. Four days later she got a fever and I immediately called her Doc and told them I think she may have an asperation pneumonia starting. They advised us to go to the E.R. at Ohsu to get her checked so we headed right in. After being there the whole day they said her chest xray looked fine and her fever was gone so they sent us home. The nnext day she had a new fever and started with diarhea. I called the docs and they said the notes stated if she got another fever she needed to go back in so we loaded up and headed back up the hill. Again we spent the wole day there and the chest xray looked good and her fever went down again so they sent us home again. That was Fri, by mon they called and said something showed up in her urine so they started her on an antibiotic. She started that on tuesday and by wed. she was fevering still and now was back on oxygen having trouble breathing. I again called the docs and they sent us back in. After another lovely day sitting in the E.R. alone for the third time in a week they said she would need to be admitted. They said that they got a weird result on one of her blood tests and that they would re run the test to make sure but basically she had an excess amount of calcium in her blood. So this is a rare thing to happen to a child like Baybe because she has no calcium in her Ketogenic diet and she doesnt take vitamin D which another source of it. They explained to me that there were only several specific situations that would cause this to happen and she doesnt seem to fit into any of these categories. One was a genetic disease that obviouly doesnt run in our family, one was a disorder that had very distictive charectoristics which she doesnt have and the other is cancer which they highly doubted was the case but they were running a few other tests that would rule it out for sure. Meanwhile we got a new team of Docs that deal with Hormone stuff called the endocrinologists, they would be the team that is trying to figure out where the calcium came from and trying to get the excess calcium out of her body. They began the process with alot of IV fluids and Lasix to fluch her system out and hopefully take the calcium with it. She also began dieretics to keep her from blowing up from all the extra fluid. The next day they checked her calcium and it didnt work, the calcium was still there. They were at this point completely puzzled by the whole thing. I began to ask what the bad things that can happen with too much calcium and basically it causes kidney stones and can clog her blood stream if she gets too much, but mostly it was the process for how it got there that was most concerning. The blood test for Rsv came bak negative thank goodness and then it was time to just wait for more results. Meanwhile the lasix and the fluid was making her pee like mad crazy, I have never seen so many full diapers in my life!! She kept up with the mild fevers and at night her oxygen requirement increased and her coughing began to get worse. She started having coughing fits where she would start coughing and hardly took a breath in between just one cough after the another until she was suctioned and her oxygen turned up for a bit. Also through all this her Resperatory rate is through the roof. they started by raising the alarm from 30 to 40 and then to 50 so it wouldnt be alarming constantly and now its going up into the 60s still they have no idea why that is happening or what it is related to or if there is any connection between the calcium, the respitory stuff and the virus that showed up in her urine. Im sitting here this whole researching the crap out of everything trying to understand everything they are talking about and trying to come up with some of my own ideas too. On another side note Baybeblue did not have a single seizures for a full week which is something that has never happened unless she is realy sick. Im sure this has been mentioned before in previous blog posts when she was hospitalized. Over the next couple days more blood tests came back and Baybeblue was having to be poked multiple times a day. THe docs promised me that only the specialty IV pandas team would do her blood draws but the regular blood people kept coming and I was getting stressed out about that and only letting them try once on her and she was running out of veins so we began dicussing putting in a PIC line where they can draw blood out of repeatedly without continuesly poking her. Everyone decided that we would do one more blood draw and if the calcium went down at all we would wait on the PIC line and reduce the amount of blood draws but if it stayed the same or went up we would go ahead and do it. Yay the tests said the calcium had finally started to go down and we decided against the PIC. So then the next day the nurse decided to just attempt to get blood from her IV. the one that had been there for 5 days? I had never heard of this before but sure enough she tried and blood came right out of it. WTF she never had to be poked this whole time. So since then they have drawn all of her blood from the IV and its still funtioning just fine. So as the Calcium comes down they realize that she is also anemic, and she has a zinc deficiency. They explained to me that zinc is what helps hold the calcium in her bones so that could possibly be whats causeing the calcium to come out of her bones and into her blood. So we started Baybeblue on zinc which she will need to take from now on. The anemia they are not sure what is causeing this butt they have a few more tests to do regarding that now. # possiblities. Either its form having so many blood draws, she is bleeding internally somewhere, or she is lifelong anemic from her other conditions. We still havent goten the results on that. Finally we got her calcium down to a good level and now we are cutting her off the fluids to see if it comes back, we have a blood test in the morning to find out, fingers crossed or wele be starting over. So on top of everything yesterday she started crying in pain and wouldnt stop for several hours so we had to giver her some morphine for pain and that really helped, this then promted us to try and find the source of the pain. I went to vent her belly and a ton of air came out along with some yellow mucous that I had also found her mouth full of earlier so she was obviously swallowing it as well. They wanted to do an ultra sound on her kidney and her bladder to make sure there was nothing going on there too because of the prior UTI and now the new signs that showed up in her urine. We waited all day for the results and they said a little something showed up in the kidney so we would need to do the next level of testing which involves adding a dye to her urin and watching it travel through the lower region and doing its business to make sure everthing is functioning rite. The fact that she has 3 urethras 2 of which funciton may also play into this whole picture as well. So that is where it stands right now. She is off the fluids and we will re check her calcium in the morning ( keep fingers crossed ) and then tomorrow we will get her pee study done and then wait for more results. Wow that made me exhausted. I will hopefully have more good new to report in the next few days and no more weird suprises.

So I would like to share my overwhelming feeling of love that I have goten from my friends and family. I know alot of people think facebook is cheezy or even a waist of time but the responces that I get on my posts and updates about Baybe are so loving and sweet. Everytime I am starting to feel a little bit down someone says something just amazing and it brings me right back up. I have old friends from highschool that I cant wait to reunite with and other Cerebral Palsy moms that all share in our same struggles and it just fills me with happy feelings. This is suck an amazing life line for me while Im in here, i wish I could thank the person that made Facebook myself, Words just cant even explain. I would also like to say a few words about the negative side to everything that is going on. There are people in this world that cant deal with the whole life that goes along with raising a disabled child. I think that some people can deal with it and have compassion for it and some people it scares them too bad and they run away from it. It breaks my heart to think that there are people out there that would rather turn there backs than have to deal with the emotions involved in my situation. What they dont realize is how lucky that I and all the mothers of diabled children that I have met. We all have been given a gift that others just cannot understand. I believe that life is about tests of strength and courage everyday, we have a choice weather it is a sick or elderly family member or a disabled child. Do you stand by there side through thick and thin or is the pain too much and you turn your back and run? I think this shows not only strength but also maturity. And if a person turns and runs is it there fault or is it just the way they are wired differently? Can they ever outgrow it with time and increased maturity or is this the way they will always be? What makes people know if they can handle it or not? Why are some people drawn to something so painfull and some just do not even know what to say? I wish I had the answers but what I do know is that no parent of a disabled child should ever have to convince someone else to care or be apart of there lives. This opportunity is a gift that should not be taken lightly. I believe that children like Baybeblue are a test of our overall humanity, and it is crazy to be the one that sees people through this weakness and compassion filter. I see the people that feel so much love in there hearts that they cannot help but just say something whether it is the right thing or not they just want to reach out and help and then there are the people that say nothing at all! I feel bad for those people, not because they didnt say something nice, but because they didnt know how, and they miss out on the opportunity to be apart of the most amazing experience I have ever had on this earth and that is to know the love of a disabled child! Thank you to all of you that have reached out to Baybeblue and I. People are always telling me they dont understand how I stay so strong and the honest truth is im not, I just have so much love and support around me that I have like all these arms around us holding us up and keeping me hoping. Literally everytime I start to get really sad and depressed about how hard everything is, someone just says something and it rejuvinates and re motivates me. Thank you to all of you, We love you all and are so glad you are apart of our lives.

Allison Linnea Yates

I would like to take a moment and say a little prayer for a sweet little angel. Allison Linnea Yates September 21, 2003 8:45 am -February 23, 2010 6:45 am. Please everyone say a prayer for her family. I would just like to say from one mother to another I wish I could send you my strength because I know that is what you need right now most. I cant even go there in my head to even think about how I would deal with what you are dealing with. There arent words available that are good enough to express what I feel in my heart for you. I just pray for GOd to somehow help you to find some peace. We are all connected by our children, there love made us strong. I just dont know what else to say....

We never met Allison but she was a connection through the UCP moms. She was 6 years old and suffered from the same illnesses as Baybeblue. She was actually hospitalized at the same time as Baybe the last time we were at Doernbecher. My friend Joy who knew her told me about what happened and my head has been consumed by it ever since. It is a story that hits very close to home, she passed away from pneumonia. My heart just hurts for this family. Here is the link to their blog.
http://web.me.com/amyjyates/http___web.me.com_amyjyates/Allisons_Health/Allisons_Health.html

Settling in is Harder than traveling

Thought I would give a quick update. Baybeblue in the last week has been doing very well. She is more alert and happy than I have seen her in a long time. The seizures are not better but they seem to be different. She hasnt been having as many of the crying seizures for the last few days but just will all the sudden scream out like in pain but then 10 seconds later shes fine like nothing happened. Her other seizures that she is having have goten a little more severe and are happening about 5 times a day. These last anywhere from 10 seconds to 10 min and although are very disturbing to watch they dont seem to bother her too much. I have not had to give emergency meds once since we have been home so I consider that a huge improvement. I have already slowly started to take her off of the valporic acid/Depakote which although I am only down from 7ml 2 times a day to 5 1/2 ml 2 times a day I think that some off her new alertness can be attributed to that med decrease. I also use the switching of the clonazapham to give her more at night and I just adjusted to give her 1 1/4 of one at night and 3/4 of one during the day and she is doing amazing, has been alert during the day and letting me sleep at night(YAY) and she has some energy which is so awsome for everyone to see. I have been Standing her up alot to put pressure on her legs and she is holding up her own weight for about 15 seconds or so. It is so cute her little legs will give out but as soon as I site her down she pushes to go right back up. I think in the next few days if all goes well she will be ready to give her walker another try. It has been a while since she has had enough positive awake time to even try something like this. Last time was too soon and she started crying when I put her in it. For whatever reason this is a really bad thing with her because once she gets upset about something then she associates it with negative feelings and then always gets upset about it. Im just loving watching her play and demand attention and smiling at stuff.

Our puppy Leo had to have surgery. he had a lump on his shoulder and initially we thought it was like a little cyst or something so we did hot compresses and it just got worse. Then he started scratching the crap out of it and it got bigger so I took him to the vet. They said they had no idea what it was but it had to be removed..300 hun bucks!!!!!!!!!! I have never spent that much money on an animal for anything before ever. The surgery went well and he is doing awsome. His surgery wound is huge and looks like frankestein but he is acting 100% better. So he gets his stitches out in a few days and Im just praying that it heals and there is no more issues with it because it really stressed the kids out. Also kind of Ironic that a big part of the reason why we got a puppy was because Lala was so upset over the death of her guini pigs. So what do you think the puppy went and did? He dug up the guini pigs in the backyard and lala found them and had to deal with them. Anyways otherwise everything with the animals is good.

Taylor performed in front of the state senate in Salem and met the Govenor and a bunch of other important people I had to pretend that I knew who they were. LOL. I am so proud of him and how grown up he is handling all of the things hes dealing with. We had his basketball ceremony and watching him mess with his friends was so weird it was like his real person personality is coming out and hes turing into who hes gona be. Hes gona be that guy that gives every body a hard time and then a hug. He got his tropyhy and we had a nice pizza evening with little slide show and cupcakes.

I honestly have had the hardest time trying to get myself back on schedule since I have been back from California. I have not completely caught up on my school work yet and I feel like Im just still palying catchup running a few minutes late for everything and forgetting little things. I feel like exhausted like I need ot sleep for a few days and then start over. Time to snap out of it. Im hoping to be caught up on my school work by the end of this weekend and then Ill start stressing about the bills. Then I will need to start looking for our new house and make a million appointments. I have to have surgery on my top molor that broke and is sticking into my sinus. Its going to suck and I gota make sure Im setup with Help for Baybe and stuff before I set that up. Also all the kids need dentist appt. Lala and Tay will be easy since I got our dental insurance switched we can now go to the dentist right down the road. baybe on the other hand has to go to a specialist that takes a month to get an appt and evertime we schedule with them she gets hospitalized and we have to cancel. She really needs to get them seen, I dont think she has any tooth pain but the meds are causing havoc on her poor teeth. Also its time to schedule an appt with the CDRC people at Ohsu they are the ones that deal with the eating end of things with kids like Baybe. They deal with the swallow studies and determine if she needs G tube and then they follow with care for the G tube. there is for sure something going on with it and it need to be changed. First of all the little flap has a nobby thing that plugs into intself thats how you shut it and its worn out so it doesnt ever stay shut when the tubes not plugged in.and it seems to be like pushing out. Its like tucked right under her rib cage so I dont know maybe its becasue shes growing but it want lay flat to her stomache its like stcking out. anyway it doesnt seem to be bothering her but it is time to get it changed anyway. There gona try and get me to go with the mickey but I think Im going to choose to stay with the bard button. I explianed somewhere in the blog about the difference between the two and my reasons for likeing the bard over the mickey remains the same. Its time to fill all the supplies and perscriptions and rite aid called and we finally got the pill size I have been trying to get for the topamax for a month. She has to take 3/4 of a tablet of it and the gave me 50 mg tab but in an oval shape. A long oval shape. Ho wam i suposed to accurately cut that into 3/4 of a pill. so I simply asked that i get the same amount same dosage just 25 mg tabs so I could just cut one in half and give her one and a half. Sounds simple to me.... NOt to them apparently. I had to request it over 5 times and after several attempts on there part ot work it out with the doctors failed I had to go into the pharmacy and call the docs and actually talk them both through the whole process finally got it figured out and its finally ready. Also need to get her into the neurologist for a visit so that we can go over the report from Stanford and officially make the changes to her meds and get the perscription for the new emergency meds. Looks like I got plenty to get done so Ill go, Hope everyone is doing well. Prayers to our little buddy Ryan who has pnumonia right now and an ear infection. Hoping for a fast recovery. Love you all.

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