Yay Christmas is Over!!

What a whirlwind of things that have happened. We are still out of the hospital now and waiting for info on traveling to a new hospital. I finally heard back from Stanford University and they said they were the only hospital on this coastline that could help Baybe. The other option was seattle but they informed that there ketogenic epilepsy program is somewhat falling apart and close to non existant due to financial reasons. The referal has already been sent and all the paperwork now I just have to wait to hear back from Stanford to let us know when we need to be there. Im very nervous because I am going by myself with Baybeblue and I will miss my other two soo bad. I also cannot drive that far alone with Baybe so I am probably going to have to fly. I have not flown for over 12 years and never really planned on doing it again until now. I will know alot more after they call me back again hopefully tomorrow.

Christmas was amazing because we were all together and that was what we all needed. I planned on getting the kids a puppy this year from Santa but had a very difficult time finding the rite dog for us. It came down to the wire and one week before xmas I found a puppy jack russel and he was perfect. I went and got him and fell in love. His name was camo but I knew that I would let the kids name him so I just called him puppy. Then I realized that I had a week to keep him from the kids until xmas morning. I recruited my amazing neighbor bre to watch him for a week thank goodness. I went and got him when the kids went to school and dropped him back off before I got them from school. Then I started to worry about him getting attched where he was and how it wasnt fair to keep moving him so I asked bre to come ask the kids to watch "her" new puppy for a few days. Of course the kids were sooo stoked to do it. It was so funny to watch them ask her a million questions about where she got him and everything about him that she didnt know. The week with the puppu went great the kids were responsible taking him out and watching him they also feel madly in love with him. Xmas eve nite we were all hanging out and about 10pm taylor realized that he was gona have to give up the puppy in the morning back to the neighbor so he started crying and balling how much he loved him and didnt want him to leave. They named him LEO and they both were devasted about having to give him up. In the morning they had a big box waiting and while they opened it I slipped a bow on LEO. The box was full of puppy supplies then they looked over and LEO came running up right on cue with his big red bow. It was wonderfull, they were all very happy. LEO is also very happy here he has become very attached to his children Lala and Taylor. He follows them all over the house and has to be sitting with one or the other of them. Last night they both left for the first time and he was so upset whining at the door for them. He also has a hillarious relationship with Tbella. He runs circles around her and she gets so mad. But then all the sudden shele start playing with him back. they love eachother too. He is for sure the perfect fit for our family cute and a little crazy :).

We also had an amazing suprise on xMAS eve day my friends Donna and Tracy came over and brought presents for the kids and me too. I was so shocked. I knew they were gona bring sum stuff for the kids but they went above and beyond and really made our xmas so much better, I love them so much. I think they just may be my sign from god that I have been waiting my whole life for. They are the purest form of just good!

We had xmas eve dinner party here at the house then xmas day we went to my parents and did the huge family thing. Now its all over and it is time to get my head back on track for Cali. The only good thing about having to go to Cali instead of Seattle is that my good "friend" Joel lives right near the hospital so hopefully he will be a good support for me while im there. atleast I will feel like Im not totally alone. There is so much still to figure out with the kids and everything Im kinda starting to stress out but just gona take one step at a time. I know one thing that I appreciate all the family members that have been here to support us and let us know they will help out anyway they can. I also unfortuantely have to say that there are people that have made choices that will create a disturbance in the beautiful way the family has been flowing and those people will just be pushed away until they realize they need to worry about there own problems. I encourage anyone reading this to really think about how you treat your friends and family especially ones that are going through a hard time. I love you to all of my friends and family that are so strong and are helping us through all of this, I dont know what I would do without you all. I hope you all had an amazing Xmas and that you all felt the love that we felt this holiday season.

Cant Forget our Amazing Thanksgiving

I didnt want to leave out sharing about what a wonderful Thanksgiving we ended up having even though we were at the hospital. First of all the Docs here must have worked very hard to get all the sick kids home for the holiday because the hospital was totally deserted. Our Day started out with a visit from my Dad who brought treats and visited for a bit. Then an amazing man that is the pastior at my friend Donna's church showed up to pray with me n Baybe. He was so cool and we had a wonderful visit. Then my sister and her boyfriend Steve showed up to visit and they looked great as usual :) Then Donna and Matt and her beautiful daughter Hannah came up with my sister lissa and they brought me some amazing food so I got to eat wonderful turkey and other stuff. We also had a great visit, Matt ran around trying desperately to fix the dvd player so I could play my new CD that my new girlfriend Donna got me of my favorite song by Jason Mraz. :) Yes I said you can be my girlfriend instead of my Boyfriend Donna :) She made me mini turkey lurkey sandwhiches which is exactly what I was craving and they were so good. We hungout for a while and then Steve and his girlfriend Randi brought up the boys Aries and Taylor. The boys couldnt come in so I went and walked with them while Steve and Randi watched Baybe. Haha they had to clean a very bad diaper while I was gone!! They also brought me food from Steves dads house so I for sure got plenty of food. Then to top it off my best friend Hush showed up to visit( the best friend that has been in apparent hiding for last few months) and we got to catch up. Overall I gota say I have never felt so loved on a holiday ever. I hope and pray that Baybeblue felt half of the joy that everyone brought me that day. I would of course rather have not been in the hospital but everyone sure did make it special for us. The only thing missing was not getting to see Layla my Diva. She was with her father and grandmother and It was there year to have her anyway so she had a good time but still wish we could have all been together. I shootin for xmas to have us all together warm and happy. Too bad were now hospitalized again and just praying that we get out in time to put up some decorations and salvage one holiday this year. I love you all, I hope you all realize what a wonderful thing you did for us on Thanksgiving, I will never forget this special year!!

And Another One!

Our last hospital stay ended with a few days of recovery, some oxygen and suction for home and some antibiotics and fish oil added to her meds and we got to go home on Saturday. The first day home and she still had not had a seizure. The last few days in the hospital we were seeing what looked like our old staring up blood shot eyes seizure that we have lots of videos of. Then after only a few of those they disapeared as well. Then on Monnday she started some new little seizures that I did not like. They involved arms stiffening up and shaking in her arms and legs. The next day they got a little worse and the next was even worse. By thursday I called the Ketogenic dietician because after checking all of her levels I believed that she had bumped out of ketosis somehow and that was probably what was causing the breakthrough seizures. We went over all of the possibilities and nothing added up. We decided to cut her off of her fish oil and mouth wash and I would then attempt to put her back into ketosis at home myself. I cut off her food at 4am fri already but the dietician asked me to leave it off and give her only water until she produced ketones. I fed her only water and continually checked her blood levels and waited for her levels to come up. In fact I used all my blood ketones checkers so I put some cotton balls in her diaper to wait for pee so I could test that for ketones. I was told by the ketogenic dietician that if her ketones didnt come up by the morning she would need ot be seen right away. By the morning not only did I have no ketone blood checkers but the cotton balls were dry. I contacted the medical supply company so that maybe I could just run to there office and pick up some more sticks but they kept putting me on hold and telling me they were trying to figure out if they even had any in stock and that the insurance was being difficult because the perscription for them ran out and they would have to send for a new one. I went back and forth with them for about an hour before I decided to call Kristi Heely and tell her that I couldnt get this figured out so I was just going to bring her to the ER to have her levels checked so that we would know for sure, if they were still low I would have to bring her there anyway. Kristy had just talked to medical supply people and they were attempting to get it fixed quickly but after another call to the supply company and they said were STILL trying to figure it out whether we have any, I decided to just take her in since I was already almost there. When we got to the ER they took her temp right away and it was way too low :( They had to re heat her with the magic heating blanket(think I want one for xmas LOL) then they came in and told me she was most defenetly being admitted and strait to the PICU(Pediatric Intensive Care Unit) I had once again only a few min to figure something out and was not going to not have any of my stuff again so I had my sister come sit with Baybe and I rushed to my house got my stuff and taylor from school and rushed back. Baybeblue right away when I got back woke up and started having seizures and crying really bad. She had quite a few in a row. Her keto dietician and our favorite Neuro Dr Coryell joined the ICU team to work on Baybes case. They all witnessed her brand new seizures and decided to give her some ativan to calm her for the night. After the first dose she then had a few more seizures. They then decided to give her a bigger dose of ativan to really calm her. After that she fell asleep for an hour or so. Then she wakes up and just stares for about 20 minutes. Then she has another big seizure and starts crying and doesnt stop at the end of the seizure. She just keeps suddenly crying hard over and over. We removed her catheter and searched all over for what might be causing the pain she seems to be having. It wasnt the catheter cause shes still crying with it out. They tried one more dose of Ativan to see if they could stop the crying that was originally a part of her seizure. The ativan made her seem sleepier but did not make her stop crying which reinforced the thought that this was pain and not seizure. I then asked them to give her something for pain and again shes back on morphine. She cried for about 5 min while it kicked in and now she is out. It is midnight on Friday night and I am sitting here waiting for whats next. If everything goes ok tonight then we will be moved upstairs tomorrow and we will be under the neuro's watch. The are talking about doing an eeg to see whats happening and they have run a million blood tests again that we will be waiting for the results on. Her ketones have gone up a bit since we have been here but aparently not enough. It so stange how she can seem to be doing so much better one minute and then so bad the next. Its breaking my heart seeing her cry so much, it is for usre not something we are not used to seeing. Pretty crazy that last week was finals week so its like she got better long enough for me to finish my classes and now she is sick again. Her lungs although they said look better than when discharged Saturday still ate pretty bad and she sounds terrible so they are doing suction and respitory therapy and she is still on oxygen although she was at home too. Im hoping and praying that this is the same crying we saw right before we started the diet and once she is back in ketosis they will stop. Her infantile spasms are still gone though no sign of those damn things. Il be back for an update tomorrow, had to take a break while I finished my finals but those are done and those classes can eat my dust, just kidding :) I actually really liked those classes and am going to miss the teachers very much. They really had faith in me through all this stuff the last few weeks they worked with me to make sure I had a chance to finish, and I am eternally grateful. I am hoping and praying with all my heart that we will get this figured out quick and get back home. We just had a stupid house inspection and had to spend last week preparing for that so between that and my finals we never really got time to all just enjoy eachother and being home. We were gona start that this weekend. Sending my love to my kids rite now and to all my support crew that love me and I love them and to anyone in the world that is going through anything similar to what we are dealing with . I wouldnt wish it on my worst enemy. This is not a way for a child to live, I am sad everyday she is sick and stressing about her quality of life. All I can do is love her and she will never be able to tell me if thats enough. It is very hard! Ninite.