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.

Back Home

Yes, we are back home and doing very well. Baybeblue is recovering from whatever virus she had wele never know but it wasnt the flu so yay. She is still having a little congestion but no more fevers and her heart rate has been doing good as well. I havent seen anymore breath holding spells so hopefully this was a one time thing and hopefully its not something that happens whenever she gets sick now. We are taking it easy this week trying to get well so we did not do therapy and her playgroup got rescheduled since sammy got sick and hospitalized too :( I got word that Baybeblues wheelchair will be here anyday so I am very excited about that, cant wait to go pick it up. Which means that we will be moving very quickly here, Im kinda nervous and I really need some boxes.

I am doing great in school taking only 6 credits I am getting strait A's and I also have been pretty distracted by a boy lately. I know, I have no idea how I even found the time for that to happen but I am really happy I found him and I have a new huge burst of energy because of it. Also I quit smoking 19 days now and I have never felt better. The boy was defenetely a big help distracting me from the struggle of quiting. He doesnt realize it but I accredit him for how I got through it :) hopefully you will be hearing more about him.

We are planning a holloween party for the kids and there friends so anyone that would like to come let me know, we are gona scare the crap out of them it will be sooo fun. lol. All is well for now,I hope you are all well too. Wash your hands and stay home if your coughing!!

My worst Fear

We are hospitalized again at OHSU. Wednesday everything was totally normal and I dropped kids off at school, had a good day, then picked kids up. While I was waiting for Lala to come out of school at 4pm I noticed Baybeblue was breathing heavy and fast. I noticed it but wasnt alarmed because her seizures often make her breath fast afterwards. We got home at 430 and when I took Baybe inside she started crying and whining like she was in pain. I checked her out and then snuggled her up and gave her love til she passed out. Ten minutes later she woke up having a seizure. I felt her and her feet and hands were ice cold but her head and body were burning hot. I took her temp and it was 103.7. I called the doc to confirm on fever meds dosage for her and then gave it to her. I waited a while then re took temp and it was 104. She was whining in pain and breathing very heavy and fast so I called the doc back. They called E.r. to let them know we were on our way. After a long long night in the E.R. she was admitted. She was not breathing well enough on her own so they put her on oxygen and swabbed her little nose for the swine flu. Yesterday all day was pretty uneventful, lots of waiting and observing. Until last night we got her off the oxygen breathing well and then we went to bed. I couldnt fall asleep( I have insomnia now because I quite smoking 11 days ago) and then at 2am her alarms started going off, her oxygen level was in the 60's and I was trying to figure out what was going on when the nurses came rushing in and then it stopped and she was fine oxygen went back up. Well I didnt even try to go back to sleep then. I watched her and she started whining in her sleep and then I was watching her monitor and one line went flat so I looked at her and she wasnt breathing. I started counting and the alarms started going off again and the nurses ran in and I got to 10 seconds and then she took a big breath and went back to normal. So we all stood there forever watching and she was ok. They said they could go back and read what the monitor was doing and try to figure out what was happening. So then this morning they said that they looked at the breath holding and also they saw several instances of missed heartbeats and irregular heartbeats. This has happened almost everytime we have been hospitalized so it is now drawing attention. I guess its ok for it to happen every once in a while but when it happens regularly then its a bigger deal. So now we are just waiting for the results from the flu should be either late tonite or tomorrow morning. I think its great that the nurses have had to deal with the sprinkle meds for the last few days that I was having so much trouble with, and YES they had trouble too so we are switching back to the other form right away. EVen though I had already decided to do that anyway It was nice to see I wasnt the only one that couldnt do it. Also the pharmacy confirmed that mixing it with hot water runs the meds so everytime I have done that the meds havent been working which is contributing to her increased seizures. Yesterday she had a seizure almost every min of the entire day escept when she was sleeping. Today has been the same she has been seizing the whole time the docs have been in here several times so they are discussing it now. She is still overall doing well and we just got the results back early and she does not have the flu!!!!!!!!!!!!!! YAY so what does she have? we dont know. We are going to observe her for the day and see how she is doing, and try to figure out what they want to do about the breath holding and increased seizures and when shes stable we will be able to go home. Wow what a relief they literally just walked in and told me while I am writing this so I gota go tell everyone else. Good news is we got to see our favorite nurse stephanie and many other familiar faces. One nurse came in that I didnt know and she said, "do you recognize me, because I dont know you but all the other nurses said EVERYONE knows you and if they dont then they will eventually. I think thats hillarious and anyone who really knows me will too. I have a tendancy to speak my mind and make my presence known especially in hospital situations. Thats just how I do. For instance while I was here this time I spoke to the social workers and advocates to demand some new policies regarding there way informing the patients about there options for food resources while there staying in the hospital. If you have read my older blogs you would see when they upset me for telling so many different answers to same questions. I told them how some nurses say one thing and the next says something totally different. They agreed there was no policy in place regarding this. So then they ha to talk to the administration and they are going to fix the problem. Then I suggested a fundraiser to buy food tickets for parents that come in with there sick kids. The last thing the parents should be thinking about is what they are going to eat and there are no meals for parents here. Anyway people brought me groceries but I can imagine some people probably are pretty screwed while there here. So they arranged for me to talk to the OHSU foundation for fundraising so that I could talk to them about setting it up. So there are alot of new people that know me now! Thank you for all your good wishes they keep us both strong.

New Orthodics

So the last week has been busy and good for the most part. Baybe got her new orthodics thing that helps align her hips so she can sit up better. It is sort of a crazy contraption but it actually makes her sit up way straiter. I had taken a few pics of her sitting in my rocking chair before and then took some after with her wearing the orthodics and she is sitting so much taller. She was apparently very comfortable wearing it too because she passed out for about 30min after I took those pics. If you compare the before and after just look at the height of the arm rests on the chair.

I made the plan to protect Baybe by getting everyone in my household vaccinated against both the seasonal flu and the H1N1 flu virus. She is high risk for complications and cannot get the flu or it could be very bad. I was first to go and get the regular flu shot and it was, yes painful but, not that bad. Until later in the evening all of the sudden I felt sick and within an hour I had a fever of 101 and was in bed shaking freezing and every muscle in my whole body hurt so bad. I even had this crazy pain in my fingertips. The other thing is that I tasted it when they injected the meds and they said that wasnt normal. I tasted it on my tongue and in the back of my throat. So then I was tossing and turning all night, woke up at 3am and my eyes were stuck shut with stuff. My eyelashes were stuck together and I had to wash them to get them clear. 2 days later now and I am still having respitory issues, my chest is tight and if I take a deep breath it hurts and I start coughing. And the best part is that Im suposed to go get another one?? And Im suposed to take the kids to do this?? Im kinda confused now.

Baybeblue had someblood work today at OHSU to check her liver and kidneys and to check her valporic acid level. I was nervous how she would react because she hasnt been poked for a while but she slept right through being poked twice. This is a big deal because we will see if all the meds and the diet have been having any effect on her poor little body. Hopefully the acid level is good too because I do not want to have to raise her medication doses right now, I want to get to the point where we can reduce it. Meanwhile over the last few days Baybe has been having some extra activity involving her eyes. At first I thought it was seizure related but now Im pretty sure that she had something in it that was irritating it enough to trigger her eye seizures. Its better today. The other day she didnt open her eyes for the whole day. She kept waking up but she just whined with her eyes closed and kept rubbing them. Today she is back to normal. We are getting closer and closer to getting her chair and Im looking very forward to her next playgroup. Shes been so cute lately she keeps whining like she does for her binky but then she keeps spitting it out and she wants to snuggle or be held. She is so perfect and sweet I wish I could just hold her all day. Its gona suck when she is too big for me to pick up, that will be sad.

other two kids got new hair colors, I will add pic of that as well, They love it. They have both started out the year well and have made some good friends and ovcourse some not so good ones. Layla is taking Spanish and Theatre so she is getting all worldly on me. She is excelling on Dance Team and wants to start learning tennis. Today she explained to taylor how he is too old now for a charactor birthday cake. She said childish things are only ok 2 times in your life. One when your under like 6 or 7 years old and then again when your over 21 cause then its funny and cute. she is like crazy smart and she chuckles when she heres adult type jokes that blows my mind. Not only does she get the joke but she now finds true humor in the jokes. Its hard to explain but it is a real turning point. Junior high was crazy and I have flash backs when I sit and watch her with her friends. Taylor is going to start the highschool jr basketball league in a few weeks and is obsessed with spending time with all the little boys in the neighborhood.

I added some new videos on the side that are mostly for the therapists that were there working with her, and because of my crappy laptop I am unable to watch them. They show baybes progress in her therapy just in the last few months. Hope yall are gearin up for halloween, My favorite holiday besides xmas. I cant decide if Baybe should be a teddy bear or a fairy. :)

I am so TIred!!

YAY, Baybeblue started her new playgroup and it was so great. There was only one other child there this time but it is only the first class so they are expecting more. The little boy is named Sammy and he is sooooo cute. He is about the same size and age as Baybe and has almost all the same disablitlites. He has seizures, Cerebral Palsy, vision problems, and a G-tube. Baybeblue did so well and really seemed to enjoy the activities and watching Sammy enjoying the activities. Her therapists, Kathy and Mary did a great job setting this up and I cant wait to meet more little friends for Baybe and more amazing parents like Sammy's. We exchanged numbers so we could be here for support for eachother. If anyone in the North Clackamas school district is interested in joining something like this please email me and Il pass it on to the therapists. Il add some pics on here.

I am in the process right now of working with people regarding what happened with Baybeblue and I am in desperate need of a good lawyer that I can really trust. Portland is not that big of a town and the hospitals have alot of people on there side that we dont know about. I am having a hard time just contacting anyone online and telling them information and getting bad advice like my last lawyer. If anyone can make a recomendation I need someone that I can truly confide in and I know they are not going to mess up the situation any further. I am so saddened everyday that I still dont really know what happened at the hospital and everyone seems to think that if they keep putting me off Im just going to give up on finding the truth. I want something to change so that another parent doesnt have to go through what I have gone through and I dont ever again either. Please email me if you have any suggestions,THank you!

Other than that everything has been going very well. Baybeblue is still only having barely noticable seizures mostly only involving her eyes now. She has quite a few of them a day but there so little you cant hardly tell and there only a few seconds and then shes right back to normal. She is functioning on a very alert level and making all kinds of noise. She is rolling around and trying to sit up actually doing little baby crunches all day, just working those belly and back muscles. Her flexability has improved greatly in the last month she is now able to spread her legs comfortably around me and I can prop her on my hip like you would a 2 year old. Before she was so stiff in her hips that we had a bunch of tests done on them to see if there was something wrong. All the tests said they were perfect but still she cried everytime you tried to make her straddle your lap or hip or even in normal therapy stretching. Everyone has been saying lately how she is opening her eyes much bigger and she is tracking people across the room now. She was so cute at her playgroup when Sammy would make noise she would stop what she was doing and watch him. I got a great tip which invloves SYRINGE ADVICE: I have been battling with the medical supply company because they keep sending me new syringes to try and they are not good. The noses of them are too small for Baybes tubing and/or there too small or too big. I found the perfect most amazing syringes that are perfect for giving meds or food through the G-tube. Olsons Medical supply in Milwaukie found them and ordered them for me and I am in love with them. The brand is Apex and there called Oral Medication Syringes that hold 2 tsp/10 ml. I cant even explain to you how much easier they are making my life. The other syringes have been clogging with her new meds and I keep spraying the stuff all over the room and and my bed on accident. I actually Clogged her G-tube on the inside of her belly for the first time and couldnt figure how to unclog it but then remembered the decompression tube has a long hard tip so i stuck it in and it worked. Thats another cool tip. Also if they are not on diet restrictions then a little bit of meat tenderizor will unclog any tube.

We are now preparing to hear that her wheelchair will be here anyday. Ya know it has been a real pain in the a** to get every piece of the puzzle together myself to get this chair and Im wondering who exactly wasnt doing there job right. Baybeblue has been riding around in a regular stroller that is too small for her for months and we still dont have it. Anyway it should come soon and then wele be moving in the next couple months into a one story and my back hopefully will start feeling better from not carrying her up and down steps.

I have also been looking for a gym in the area of clackamas county that I can go work out at with Baybeblue by my side. I have checked out a couple places but most do not allow children in the workout area regardless of wether or not they are disabled. I am not looking to have someone watch her for me, she is no trouble and no noise and would probably enjoy watching me workout. I just need to find a place that is willing to make a consideration for her. Please let me know if anyone has any information on or knows anyone that might be able to help. Thank you everyone for visiting my blog today and dont forget to check out Lala's Blog from the sister of Baybeblue at http://baybesbigsis.blogspot.com/

Hi Everybody!!

Well I finally feel back to myself, Baybe is back on trac with therapy and were very excited to be starting a new playgroup through her therapists where she will get to interact with other kids her age that are like her. It is also going to be a great opporunity to meet some other moms. Layla started on a new Dance Team and I start school monday, not sure exactly yet what Tay is going to start doing its been a toss up between soccer, karate, and football, although I think it will all come down to what is available on the days we arent already busy. Baybe is doing really well and is now only having several episodes of eye fluttering a day. For the most part she has gone almost a week without a single jerk. We did have the swallow study done and unfortunately the news was not great. They started out with different consistancies of this stuff that glows on the live x-ray. THe thickest texture is first which resembles pudding. She swallowed two good size bites in one swallow with no asperation, and I was very pleased about that. Then on the third bite she struggled and had no swallow responce so after it teetered in the back of her throat for a minute part of it then slid rite down into her lungs. They stopped the study there and approved her for two bites of something very thick every few days. Now finding something like that on the ketogenic diet would be the challenge. THen they wanted to see what was happening when she had jello off of her binky which is her favorite thing in the world and the only taste she is allowed. THey dipped her binky in liquid that also glows and when I put it in her mouth the liquid sat in her mouth for a few minutes while she sucked away on her binky she never swallowed. It also teetered back and fourth with her sucking on the binky and then also slid down into her lungs. They said sorry NO MORE JELLO. This is bad, she loves her jello, she whines for her jello. Luckily she did well. She whined for one day then seemingly forgot about it completely. I have since talked to the dietician and for her occasional 2 bites she is allowed she has been cleared through the diet to have baby food meats n gravy and some baby food veggies like carrots and green beans. I havent done it yet though cause it kind of feels like it will just make her more upset because she is not going to want to stop at 2 bites and then I will feel bad. We have goten notice that the state plans to sell our house and since we are moving into a one story anyways it wont effect us. We may be on the hunt for ourselves though in the next few months if we havent had help finding one then wele be looking ourselves. There is not much available in my area so Im a little nervous about that but also excited for a new place. Baybes chair will be here finally hopefully in the next month and we will need a better place for her to be. Hope everyone is doing well, Peace and Love!! :)

life goes on.....

Since I last blogged we have been trying our best to enjoy our summer and get our lives back to whatever normal we can find. We had a great time at the beach it was sunny and warm and there were no health problems at all. We attended our first United Cerebral Palsy event at the Oregon Zoo. It was a hot day and and everything was free but the on thing I didnt think about was how it was going to effect me when I saw all the children and people in wheelchairs and struggling to live. The last event like this that I went to was a convention of sorts for disabled people and I lost it crying hysterically like a baby. I guess it really doesnt seem that real to us until we are in a surroundings where she is acknowledges as a "disabled child" it is overwhelming and heartbreaking. This time we walked up and were greeted by two men that were in wheelchairs. They were both very disabled but were so independent and happy and I just wanted ot hug them. I felt the tears weld up in my eyes and It took everything to hold them back. The pressure builds up in my throat and then I look at my beautiful Baybeblue and she makes me feel so much better. I guess I just cant believe this is really something that is happening to us and will be a part of our lives forever. Im so worried what she will be like when she gets older and if she will be happy. Some disabled people are very high functioning and happy but some are obviously miserable and in a constant struggle with the world around them. There is just no way to know what Baybe will be like and it is sooooo scary.

Baybeblue herself is doing pretty well. She started with the increase in seizures and it just seemed to be getting worse n worse so she is now back on the klonopin and the seizures are slowing back down again. We are also using some new methods to stop the seizures whick are working well and usually within a few seconds of the seizure starting. One thing is picking her up. EVeryone has always taught us that you should never disturb someone having a seizure but I truly believe the opposite. When we pick her up the upward thrust is enough to snap her body out of it and the seizure stops, if it doesnt than a few hard pats on the back seems to do the trick. Also when I am not in a position to swoop her up I have been trying some pressure points. The one on your wrist that also stop nausia or motion sickness I read could also work for seizures so I have been trying that and it has good results as well. She was also having some sleep issues when she was coming off the klonopin. Suddenly she was up all night and sleeping all day so thankfully now that she is back on it it flipped back and she is alert during the day besides one or two little naps and she is sleeping well at night. She is now 31 pounds and officially 3 feet tall. Its crazy to think of what she would look like if she was walking around. We have only had to take her to the doc one time for this rash that is on her elbow which has been there almost two weeks. They just measured it, told me to watch for fevers, and come back if it gets worse. We have a swallow study on the 10th so we are very excited to see what kind of progress she has made in the last few months. I know I havent heard any asperating in quite a while so this could mean she gets to have some bites of something again.YAY!!

The other two trouble makers are doing well and are ready to head back to school. Taylor is excited because he has missed all his girlfriends over the summer. He also has alot less to worry about because due to changes in the school he will have the same teacher and classroom as last year in 3rd grade. He liked her alot so this is a good thing. Lala on the other hand is a ball of nerves. SHe is heading into junior high as the smallest kid in the school. Everyone grew over the summer and every girl I saw was as tall as me. I just keep telling her to be as nice to as many people as she can and make as many friends as possibel so she always has someone that has her back. Im nervous for her but she is prepared and she is so smart and amazing I know she will do well. She actually told me that I could not walk her in and help her set up her locker. I amshocked and thinking there has to be a way to convince her that it is required. The schedules are all crazy too with Lala starting school at 9 30 and 10 30 on wed's. Taylor starts earlier at 7 45 so he will be home at 2 but she wont be home til after 4. That pretty much my whole day right there getting them to and from school. THey both beg me to ride the bus but I just dont feel ok about it. I need to see them go into the school and I need to see they are ok as soon as school is over. I may be a little over protective but I love my kids so much and we have been through so much it is just hard to loosen the reigns I dont want anything else bad to happen.

I am doing ok I guess healing slowly but surely. My wounds are almost healed on the outside but one of them still hurts pretty bad on the inside and my stomach muscles may never be ok. When I bend over to pick something up sometimes I feel a little rip in my stomach and the Doc said that its normal to have pain because of all the scar tissue whatever that means. Im suposed to massage them but they hurt so I dont want to. I am able to carry Baybe around now though as we dont bump belllys. I have been working very hard on getting Baybes chair to come through but the process has hit every snag possible. From Docs signiture to wrong diagnosis codes to insurance companies it has been a journey but I believe I have done it with the aid of a great therapist at ohsu named Dave Olson. Hopefully we will have the chair soon and I will put some pics of her in it. Now we just need to get wordabout our new house and I will feel more comfortable. The word is that there is a one story that might be perfect but its being remodeled right now so Im very excited. A one story is just a necessity for Baybe especially once we get the chair. I just cant carry her up and down stairs anymore I feel like Im having mini heart attacks so we are confined to the downstairs in the house away from the kitchen and living room. I almost have anything in place to start back to school this term starting sept 20th as long as my financial aid come through I will start back with a little lighter load incase things get bad again. The school is making me jump through alot of hoops to prove that I can handle it so I better do a good job. Now I just need to get my own internet and laptop so that I can write on here more often and kick butt at my school work. Hope everyone is doing well Happy Labor Day!!