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

Getin Ready for CALI Baybe

So Stanford finally called and said that our appt is set for February 9th, 2010. I am so nervous, there are so many details. I have started off with a phone call to the case worker through the DHS and with no responce today left a message with a supervisor. They are the ones that are going to hopefully help me pay for the trip down there or else it wont be happening. I so wish that money wasnt always an issue when it comes to certain aspects of her care. Its not like you can tell her to appreciate the simple things. There are children out there that actually have a better chance at life and are getting more advanced care because they can afford it and i cannot. As of now and the last few days Baybeblue has been doing really well. She has been fairly alert and only having a few seizures a day that resolve on there own. I thought I was going to have to do diastat the other night because she had like 5 in a row but then she stopped and went to bed. Last night she had some crying in the middle of the night that Im assuming was seizure activity as well but also resolved itself. She is still taking her antibiotic so currently she is on clanazapham, depakote, topamax, levocarnatine, ranitidine, fish oil, and vitamins with flouride. Im so flipin sick of washing syringes. Anyway she is very alert and active when she is awake and has been demanding alot of attention. She whines when I leave the room and gets bored when I stop playing with a toy or focusing on her for a minute. She has been loving everything she got for her bday, thank you to everyone!! So No, I havent decided how I will get to California yet. I have had a huge fear of flying for 12 years now and havent set foot on one and also Im very concerned about her medical condition and her need for oxygen and how she would react to the altitude and stuff, it could be bad if we got up there and something went wrong. I thought about driving with a friend but my car is falling apart right now. I have had to get a jump start like 7 times in the last few weeks. Its like my battery died once really bad at the hospital and now it just keeps dying and ever since that happened now the side electric door doesnt work right. Also my brakes are about ready to go out. They are squeeling really bad when ever I use them and my front two tires are black from brake dust. I would have to get these things fixed on the van before I would drive it anywhere. I wish I could just get a rental car or something. Something nice so Id feel really safe and Baybe would be riding comfy. I dont have very long to get it all figured out and I have to get soooo much stuff ready for her with all her machines now its gone b crazy to try n pack everything she needs. I keep battling myself in my head as to whether or not Im doing the right thing dragging her all the way down there, but I have to remind myself that her main neuro said if it were his child he would have taken her to several hospitals by now. Stanford will look over everything including all of her tests she has had done and studying the EEG is gona be a huge deal. There are seizures that she is having that make her cry that the docs here are not able to see on the EEG and that has caused some issues between I and them. I trust myself more than I trust the machine and I hope that the neuros down there have some good insight into what is going on. They will also be able to stay involved with her care after this appt. Onece they have seen her then they will remain a resource for us even if it is only over the phone or computer. She will be seeing Dr Olson at Stanford University, the same Doc that she saw before. They actually said that they remembered her( thanx to me for naming her so unique) it really has been a blessing having people never forget her.

So on Sat night I planned a night out for myself that I desperatly needed. I had both babies Daddys here to watch the kids and I had some of my best girlfriends meet me and we went out. Although I really did enjoy the time away, I had the horrible tragidy of having my camera stolen. I had just got done taking a bunch of pics of me and my friends when I left it sitting by a group of guys. When I went back for it the camera was gone and so were the guys. Im a so stressed out aout it, there were over 200 pics and videos of the kids on there that can never be replaced. Im so angry I really hope the people who did it feel terrible when they see a ton of videos on there of Baybe having seizures. What a bunch of jerks. Ill just add that and my car to the list of things I have to figure out how to pay for. Like the toaster we had to throw away because Taylor put cream cheese on a bagel before he toasted it and the microwave we had to throw out because I spilled a whole bowl of water in it so it shorted out and didnt work anymore. Then theres Taylor Bday and that falls spack dab on Feb 7th right when I will be freaking out about leaving for Cali. This all should be a test of my mental strength. Im hoping that Taylor doesnt add anymore stress by inviting people over without telling me again and that everyone stays supportive and helpful in this rough time.

Oh yeah and Im still in school doing just fine staying on top of things. Now if the house would just magically stay clean I would be ok but OMG how can it b this messy everyday. Each day I try to come up with more rules or better ways of doing things so it doesnt get so bad but it never works. the kids just hide things and cover things up and make it worse. cant complain too much right now, we got it clean clean clean today and I got corned beef and cabage almost done cooking and it smells soooo good. Baybe is being stubborn though and her oxygen is staying right below 90 today so her machine is beeping over and over and driving everyone crazy. Thats not enough to turn her oxygen back on but she wont stay awake wich is what brings her back up. I added a few cute pics one of the crazy snow we had, that was nuts.

Hope you are all having some good family time while its icky and crappy outside. Hope you are all healthy and Happy!!

One more pneumonia

So Christmas is over and we are totally about the new year and a fresh start. We decided to use one of our Xmas gifts, a gift cert. to Olive Garden to enjoy some family time and have our own little New Years dinner. Layla, Taylor,Baybeblue, and I had a wonderful dinner and took some really funny pics. Then we went to the mall so the kids could spend there gift cert, they got for places in the mall. I was actually suprised that it wasnt that busy there and we had a nice time shoppin around. Then we went home and all struggled to stay awake till midnite then passed out!! We started out the New Year with Baybeblue still on a rocky course. She was having about 3-5 seiures a day which isnt that many but they were bigger than normal and sometimes I thought they werent gona stop. I was on the phone with Nuerology almsot everyday trying to figure out what we could do to get these seizures to chill out. They were making her upset enough to where she was crying for alot of the day after and before she had them. They told me they wanted me to try giving her a bolus dose of her depakote and extra 7 ml in the middle of the day and then reduce her topamax back to what it used to be at 1 1/2 pills instead of 2 wholle pills. by the next day her seizures were already better and she was way more alert. Then she all the sudden start sounding congested, then she starts coughing then comes the FEVER. Her oxygen level would not stay above 90% so her pulse ox was alarming continuously. I watched her closely and after 24 hours of that I had to put her back on her oxygen. she was on a liter of o2 and was still having fevers ranging from 102-104. I decided to call neuro again and Kristy told me that she needed to be seen if she was congested and was requiring oxygen again to make sure that she did not need antibiotics. She transefered me over to the pediatrics dept. and they said that I needed to take her right to the ER so off I got the kids off to school and we headed up to OHSU. After about an hour in the ER they told me that we would for sure be staying because she has a bad pneumonia so they were getting a room ready for us. 9 north rm 48 this time. We were really hoping that they would do they couple days of IV antibiotics and then they would let us go before her bday. Didnt quite workout that way even though she was getting better, not worse, she was still requiring oxygen and was still really congested sounding. So we had her bday in the hospital. We had lotsa visitors: My dad, Her noni, Auntie lissa, Aunt Donna, Aunt Cynthia, Auntie Hush, CHild life in the hospital got her a cake and made her a sign for the door and she got a bunch of presents and baloons. then her grandma and granpa showed up with her Daddy and her brother Tay. Overall it was a pretty good day considering we were in the hospital.

Over this time period I started out with a migrain headache on the day we were admitted which quickly turned into full blown nausia and vomiting and migrain. I was seen in the ER and they gave me nausia meds and pain meds and sent me on my way back up to her. The next day I was way worse and still throwing up, by the night time I was in so much pain I had to go back to ER. This time they did a cat scan and found a huge Cyst. They did a ultrasound to confirm and then gave me more meds and sent me on my way again. Now Im going on four day and still having extreme stomach pain. Its not a familiar pain,I dont think i have ever felt like this before.

We get to go home today so we are very excited. We got word from neuro right before we got here about Cali and they said that the referal had been sent so now it was up to them to call me. Im starting to think of how hard its going to be to travel with her. especially if she is still requiring oxygen. Cant wait to get home to my kids and my puppies and my bed. I am exhausted from trying to sleep in this place.

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.

Yee ha, what a ride!!

So things were continuing to get a little worse every morning they would do a new xray on her and it would be spreading a little more and they tried switching her anitibiotics a total of 7 times i believe. Baybeblues whole body is now completely swollen up, her belly button is about to pop out like a pregnant women and she developed a rash that is bright red and covering her whole body. I was really concerned about her IV site and after telling 3 different docs that her hand and arm were way more swollen than the rest of her body and that I wanted them to replace the IV since it had been there for a week already anyway. They called the IV team and sure enough the IV was no good and they decided they would have to put in an IV line that would be threaded all the way in to right by her heart and this IV they would be able to draw blood from. SInce they were doing multiple blood draws a day this sounded like a good plan so they had to sedate her and take her for the procedure. It went well event though they put it in too far and had to pull it out a little afterwords, now it there and it can stay for a long time. Then I woke up the whole side of my face was swollen and I had a bump on my head and neck that felt like i had been punched a bunch of times. i went and got checked out and turns out I have chicken pox. Of course I caught it somewhere here but they had ot stick me on a bunch of meds and me n Baybe got moved to the negative airflow super isolation suite. It is the biggest room they have and has a giant bathroom with a giant shower :). We got all settled into the new room and her blood pressure started dropping and they couldnt fix it so they told me they were going to have to start a blood transfusion. They explained to me that we would have to use donated blood since I was not a candidate since im sick and it takes a week to clear the blood anyway and she needed some now. I signed the paper and they started the blood drip. Then i started haveing a reaction to the antivirals so they sent me downstairs to get benedryl and as soon as i got down there they called me and said Baybeblue would have to be rushed to the ICU because her blood pressure and now she was hypothermic and they couldnt get her temp back up. I ran back up there and we moved again to the PICU pediatric Intensive Care Unit. this room sucks. They put her in this inflatable blanket that was blowing hot air on her to heat her body up and they had to poke her all over to find a new IV spot since the blood was flowing in the other one and could not be stopped. Finally she calmed down and I asked if I would be able to make a bed near her and they said absolutely not. In the ICU they dont allow anything near the bed incase of emergency. I actually had to sleep on a bed across the room, behind a beam where I couldnt even see her. I did pass out pretty hard for a few hours since they had given me morphine in the ER then the benedryl, I dont even know how I was functioning that long. soooo... I woke up delerious and confused cause it was so quite and went to check her out and the nurse said her temp went normal, her blood pressure it not perfect but better, and she is almost off oxygen. I was like WHAT? She was on high oxygen the whole time we have been here and all the sudden she is just breathing wonderfully. She is still breathing fst but moving oxygen and I was so happy she was only on 1 liter and at 100% so they bumped her down to a half. So they said they would watch her for another 24 hours but if all goes well we would be moving back upstairs the next day. The night went pretty well, they had to mess with her a bit, not sure why, just always something and she was whining alot so they gave her pain meds and she had to have a little bit of oxygen but she is still only on one liter. Bad news is she is still swollen really bad and her lungs now not only have junk in them but now have a bunch of fluid in them. Apparently her organs arent holding fluids in them like there suposed to so the fluid is leaking into her body and lungs. They started giving her meds that is suposed to reduce the fluid in the body but it doesnt seem to be working. We had a pretty quite night until they mad me get up at 5 am again and leave the room so they could do an xray. then i passed back out and woke up to her crying, I jumped up and saw 2 nurses on her and was like ehat the hell are you doing to her. They were putting in a NG tube down her nose and she was starting to scream. No one even told me this was gona happen. They said that her G tube in her belly is shot so the surgery team would be coming to look at it but they were concerned she was asperating more fluid into her lings so they needed to put a tube strait to her intestines so they could start feeding her again without it leaking out her belly through the tube hole or going back up and into the lungs. I was a little thrown off and told them I wanted to do it myself. They told me i couldnt for liability reasons and I was like that doesnt make sense you guys are the ones that should be worried about doing something wrong to her not me. I have placed the NG tube many times and I feel like she was in less pain when I did it. So whatever!! They had to take an xray after they placed it and sure enough the tube coiled up and was heading back up instead of going down. They had to take it all the way out and replace it again which is just so miserable for her so I got them to give her some more pain meds and they did it again. Now we are waiting to be moved back upstairs and waiting and waiting. Meanwhile what a wonderful thing to be happening at the same time as all this is the wonderful people that have surrounded Baybeblue and I with love. They dont realize how much they mean to me because they dont understand how many times I have dont this all alone. Granted it has never been this bad before but I am just so overwhelmed. I am on Facebook doing updates for my family and friends and everyday getting messages from someone new that just touches my heart. Everytime I start to get down and really loose it, someone says something that just pulls me back up. I wish I could show each person how much they have helped me but I dont even have the power. My sisters boyfriend Steve has a brother and his brothers wife is named Donna. She is OMG so amazing. She came to us with her lady group to pray for Baybe and has just already done so much for me im almost in shock about it. I have never had a friend that was like her before. SHe is so selfless and just true, and just beautiful inside and out. I am so lucky to have her in my life now, she is like a gift really. Along with her comes her amazing friends that have come up here and sat with Baybe and massaged her all over and loved her and prayed for her and they brought me tons of stuff and they threatened me with physical violence to make me drink water and eat LOL. That was hOt!! They all for sure make me want to be a better person everytime I talk to them. SO then there is all the friends from highschool that I never thought I would see again and now they are a part of my life, i feel so full of love right now, you guys are all making me so strong its amazing. More updates later and sorry if this is sloppy but Im too tired to proof read and its just too long of a post so Im gona go try and hurry things along so I can get her upstairs, Im tearin up a little im so excited to shower. Love you all and thank you for your prayers. I believe in the power of people and prayer and it is really working. Everyone have a wonderfull thanksgiving and keep us in your thoughts, give thanx to God that he is holding my Baybeblues hand right now and healing her from whatever this is. Thank him for listening to all of our prayers and ask him to keep her heading in the right direction, getting better everyday. <3>

I cant even think of a title for this one...

We are still currently residing on the 9th floor of Dornbecher childrens hospital. Baybeblue has managed to get worse and worse each day that we have been here. She has the pnuemonia that has slowly been spreading and is now on both sides of her lungs. She has the Rhino virus which is just weakening her and also croup which is another lung issue. They also believe she has someother virus type things going on which is why they keep testing her blood over and over everyday. She has now even been re tested for the flu which we are still waiting on. She is now completely swollen from head to toe her little face is so swollen that her eyes are swollen shut. they are saying it is because of the fluids they are giving her and because her protien level in her body is too low so the fluid that her organs need is leaking out into her body space and not staying in the organs where it should be. The only way to fix this is to get protien into her but her feeds were dicontinued because of the g-tube problems. he G-tube is red and irritated but has also dialated itself so the contents of her stomach are just leaking right out everywhere. it even blew air out when I was cleaning it. they are now talking about giving her this fluid that goes Iv but has things that can go wrong with it so they dont like to do it unless necesary like this. If we dont get fluid into the organs that I dont know what will happen. She has also developed a rash that has taken over her face and is starting to cover her all over. They "think" that it is probably viral but it looks terrible and ontop of the swelling is very scary to watch her. They have started giving her new breathing treatments involving coming in and putting a machine around her whole upper body. the thing inflates and shakes her whole chest area really fast to loosen things then they suck her out like crazy. they also started doing albuteral inhaler treatments so I cant say for sure if it is really helping but they did get some junk out. When we first arrived to the hospital she was on 1 liter of oxygen to keep her stats up and over the course of the last week it has been bumped higher and higher and now she has been upgraded to a full face mask and her oxygen is now at 6 liters. In her whole life through all of her sicknesses she has never had to go over 1 liter, this is crazy. Her mouth is dried out and keeps bleeding from the oxygen and her poor little angelina jolea lips are al puffed out. We hav had non stop raging fevers and then we have had hypothermic points where her temp was too low and her blood pressure is now worrying them. her heart rate has been through th roof and her fingers and toes keep turning blue. I just want to pick her up and hold her but she is in so much pain that it just make it worse. She is whining and crying in pain when she wakes up so I have been making them give her pain meds here and there to keep her comfy through all this but she is so miserable. Im scared because I have never seen her this bad. I have never actually seen anyone this bad. I love her so much and My heart is just hurting so bad for her. Yesterday I lost it and had an a huge anxiety attack with chest pain and dizzyiness so I had to go downstairs and be seen. Basically they gave me some anxiety meds then I just wanted to get back to Baybe. Then is sat for the rest for the night with a migrain from crying. Today I am doing a little better but honestly not really. We have no idea whats gona happen and we have no idea how long we will be here. I have started a circle of prayer for her on facebook so if anyone is interested in adding me then just email me through here. Thank you all for your continued support love you all

OHSU our second home

Yes we are back up at Doernbecher. Soooo... Baybeblue went and had her H1N1 flu vaccination at OHSU on monday. They had no regular vaccinations, only ones for high risk kids so Baybe got one. I watched her closely for the first two days like they said and I saw an increase in seizure frequency as well as intensity. She started having the old kind of seizures she used to have in her videos. Then she started having them back to back and having trouble breathing in between. I took her to the hospital on thursday because she was statting below 85 on her oxygen all night and her heart rate was very high. She had a fever and was just not looking well. At the ER they did a chest xray and discovered she had some junk in her right lung so they diagnosed her with asperation pneumonia and sent us home with antibiotic augmentin. Over the next few days and ove the weekend Baybeblue got progressivly worse instead of better. By Sunday she was struggling to breath and her alarms were going off constantly. I called the on call docs at ohsu and told them what was happening and they said to bring her back in right away. So at 4 30 on Sunday afternoon I made arrangement for my sister to come get lala and get her to school in the morning and had to take Taylor to his dads so he could take care of getting him to school in the morning and finally headed to the hospital. We spent the whole evening sitting in a room listening to children screaming. One little boy was in the waiting room was in so much pain he was screaming nonstop and they just left him out there. The mom was crying and Im willing to bet the kids elbow was broken or disconnected. Im just gona say if that was my son, I would not have been so patient. He was in more pain than I have ever seen a child. Anyways they did another chest xray and it looked worse than thursday so they tried another antibiotic in I.V. form and since she was requiring oxygen to breath, they told us we would be being admitted. of course I hadnt eatin all day and I forgot my phone charger but this is the way the game is played. I brought a razor and deoderant so thats one positive. Oh yeah and my new amazing mini laptop that is saving my life right now, I love it!!! Of course we didnt start figuring stuff out until midnight when they realized there was no one in the hospital that could make her formula so I had to go to a secret formula mixing room and make her formula myself while this guy and a nurse stood over me. The nurse was funny, we both thought it was ridiculous that there was only one useable scale in the hospital and it was guarded. Apparently having to do with budget and feds watching over everything the hospital does, I dont know, sounded kookoo to me. So I got the formula made and we got meds figured out and Baybe was not ready to go to bed. She is used to being next to me so she whined until I got in the bed with her and held her then she passed out instantly and so did I, Sorry Joel :) He was waiting for me to get back on computer. I woke up at 4 am and the nurse was standing over me so I got into the chair and slept a few more hours. So now we wait again. They are now saying that she does have a pneumonia, does not have any flu, but the not being able to breath is stumping everyone. She is struggling so hard to breath that she sounds like an old grandpa when there sleeping. her little belly and throat are just heaving like crazy. They tried to take her off the oxygen this morning and she dropped immediately so she is back on as of now and we will not be going anywhere until she is atleast able to breath ok without the oxygen. We are waiting for nasal cultures and blood cultures to come back and hopefully she will start getting better with this third kind of antibiotics that they are trying now. Send your prayers and good vibes, we need em all :) Love you all and eat something yummy for me, haha. Il be on facebook all day since my phones dead, if anyone wants to find me LOL <3 <3 <3

Another Day Another Virus

Happy to say that it has been very boring and quite around here, just the way we like it. Baybeblue made a new friend in playgroup named Carter and he is sooo cute. He is also about the same age as Baybe and has the same diagnosis even has infantile spasms. Baybe FINALLY got her new chair YAYYY !!! she is now officially rolling in style. She got to show it off at playgroup, it was so much better for her than her evil stroller :) Halloween went well, Baybeblue was a puppy dog. Layla was a gothic witch and Taylor was a mummy guy. We decided this year to throw a halloween party for all the kids to make up for lala not having a birthday party this year. It was for the most part a great success. The only thing that went wrong was that our whole goal was to scare the crap out of the kids and we couldnt pull it off. Nothing we did scared them. We even had a pitch black candy hunt in the backyard and had neighbor guys jump out and the kids were so worried about getting the candy that they didnt even care. We did not get one scream. We had a dance off, and apple bobbing and we all boogied down and made complete fools out of ourselves. I gota give love to my girl Cholie for helping me pull it off she was right there with me and I couldnt have done it without her. Then halloween night Taylor went with his Dad and Lala felt too cool to trick or treat this year so I let her have a friend over and we went out to Dinner with the girls. We chose the perfect place because everyone there was dressed up in great costumes and all the customers were pouring in wearing costumes too. I dressed like a Doctor and it was a very fun dinner. It was much better than taking Baybe out into the cold weather to trick or treat and she did start to have some increased seizures that were a little more intence than normal even 2 that involved crying a little. Over then next few days she came down with a fever and was having very rapid breathing. On the pulse ox machine her oxygen was barely staying at 90 and her heart rate was 140-160 which is high for her. I chose to ride this one out and not take her in unless it got worse than this point. Her fever was at 101 which doesnt alarm me too much. Over the next few days she remained lethargic and was having pain around her G tube like she always does when she is sick. Then all the sudden today she wakes up and is totally better, full of energy, and movin all over the place.

Hmm lets see... Taylor got hit in the eye with a football and scratched his cornia and Lala missed school for a head and tummy ache but other than that they have been doing very well. Lala is excelling on her Dance team and Taylor will be startin gBasketball any day at my old highschool :) I am doing great in school and have hit the quite smoking for a month mark and am feeling amazing because of it. It is true that you have more energy and your skin improves. I also have a special glow right now because of some one in my life that i have needed for a long time. I dont know how he does it but everyday he seems to make me a little happier. The kids are actually seeing there Mom really happy for the first time. Makes me feel like I have been in super grumpy mode for a while. I always try to be positive for the most part but with everything that has happened I really thought that I would never meet anyone that made me happy again so it feels very nice, I like it.

Still no word on the move, even though we now have her chair they still dont know what is going to happen and there still is not a home open right now for us. Im just hoping that they are not going to move us right at christmas time because it is already going to be a tuff one as it is. I hope everyone is staying healthy, tis the season for viruses so wash your hands like crazy and stay home if you have a cough. People with CP are having an especially tuff time staying healthy I noticed, That makes me very nervous for Baybe.