OMG WT*

So the reason why I was in so much pain after the surgery is because after another trip to the emergency room I found out that I also had a kidney infection. They pumped me full of antibiotics and gave me a bunch of pain meds and sent me on my way. The pain meds honestly never helped a bit the pain was crazy like worse than having a Baby. Then a few days later I ended up in so much fricken pain that I was crying and couldnt move I had no one to take me to the hospital again so I called 911. They gave me 2 shots of something strong called phenetoin or something and that did nothing to me. At the Emergency Rm they gave a total of 5 doses of dilaudid which is stronger than morphine and finally I was out. Unfortunately it was because they gave me a little too much and had to do a little freak out and wake me up and make me take some deep breaths and stuff. They came in the room and said, "you have a kidney stone". They gave me an 85% chance of passing it on my own in the next three days or I would have to have it removed surgically. Or I could go right now to Port. Providence and get it out now. Like an idiot I decided to try and let it come out at home. Laylas Bday was in three days and I still wasnt able to do anything. We ended up agreeing that it would be best if we postponed it to 2 weeks away so that i would be able to help. All this time the kids were taking care of me and themselves. My Dad came to the hospital when I was there and Ryan stayed with the kids but mostly it was the hardest thing that we have ever gone through. This whole time Im having these horrible flashbacks of being alone at the hospital the night of my appendectomy. I was out of it and being mean and trying to escape and the people that were taking care of me were being mean right back. I wish more than anything that I would hav had someone that could have been there that night. It was like taking over my thoughts for a min. I was really scared and confused and those people thought thats who I really was. The memories are kinda like a dream but I do remember them saying over and over again, "Mam you have to keep your robe shut, we have other patients!" I ended up letting lala have a couple girls stay the night on her bday since we werent doing anything and they didnt require me to get out of bed. That was a mistake too. I woke up in the middle of the night in the worst pain ever and I tried so hard to meditate and try to mind over matter bull crap and I was alone with all the kids and lalas friends were there and then Baybe woke up and puked all over me and all over the bed. I cleaned everything and got her back to sleep and couldnt handle the pain anymore so I called my dad. While I was talking to him all the sudden the pain stopped. I told him I would call him back and crashed out hard. I knew that I couldnt go through that again so I called and made arrangements to go have it removed. I had to have a neighbor give me a ride and annielaurie and my dad met me there and I went into surgery again. I woke up this time in pain again and they told me they put a stent in from my kidney all the way out by my bladder. I could feel it and it hurt bad. THen they told me that they didnt find the stone. I flipped out and demanded a ct scan to see where it went and although I pissed off alot more people I got the proof that sure enough the stone was gone. I was mad because I told them it stopped hurting and had asked before surgery why they wouldnt do a scan to make sure where it was before surgery. Apparently it passed somehow without me knowing inbetween the time I called and set up the surgery and the time I got there or maybe right when I got there and they made me pee. Anyways it was gone now and They wouldnt have even had to do the surgery. I apparently dont do good dealing with anastesia and my kids were suffering everyday staying with different people. Baybe seizures are still getting slightly worse every few days, and im thinking she will have to stay on the klonopin. So then just a few more days of absolute miserable pain with the stent in I find out that I actually have to go under and have full surgery again to have it removed. after switching times and days on me like 3 times I ended up back in the hospital for surgery on the 12th two days before my bday. I had to have my wonderful dad take me and ryan stayed with the kids til 1 then cholie watched them until 3 then annielaurie came and watched them until I got home from the hospital. Finally I was done had the thing out of me and with a little more recovery time I pray to god to never have surgery again. It is hands down the scariest most painful thing that I have ever been through in my life. I have a new appreciation for Baybes pain and all she has been through, I cant believe how tuff she is, way tougher than me. I tried finding online anyone who has ever had all these things wrong with them at once to try and find a connection and couldnt find anything or anyone. If anyone can I would really appreciate it I just cant make sence of why or how I ended up with appendicitis, kidney infection, and a kidney stone all at the same time. Time to get healthy and try to make up the rest of the summer to the kids. I am going to try to enjoy my bday tommorow the best that I can and then next fri I will throw lala her party if I can get it all together. Baybe has to get back to her therapy and she has a feeding clinic coming up in sept where they will give her another swallow study and see if she is ready to have some bites of stuff. I have reserved the condo for us to go to the beach the 23rd and 24th so as long as everthing works out wele have a little more family time before school starts sept 8th ahhh. early mornings and cranky kids trying to argue about clothes and homework cant wait. Lala is starting middle school so this should be an interesting year. Thank you to everyone that was thinking good thoughts for us through this time and please if you ever have a friend going through surgery go and be there for them, it really is alot more scary than most people would probably admit.

Holy Appendix!!

Sunday we enjoyed a beautiful day at the park for a family reunion. All the family was from my step mothers side and were people we had never met or hadnt seen in a long time and was so fun. The kids reunited with old cousins and Baybeblue got to meet the whole family and everyone loved her. Monday morning at 5 am I woke up with a bad stomach ache. It hurt all over my belly so I thought I had goten sick from something I ate at the picnic. Over the course of the morning the pain seemed to get worse and didnt feel like it was gona go away so I thoughtI better get it checked out to make sure it wasnt the flu or something Baybe could get. I went to the emergency room because I dont really have a primary doc right now because of the insurance change to an open card. The docs asked a bunch of questions and honestly I thought it was gona be a gas bubble or something silly. They pushed on my stomach and I screamed out a death scream and lost my breath for a min and was instantly soaked with sweat. They took me for a cat scan and then I waited. A nurse came in and said so appendicitis huh? I was like what? he said oh they didnt tell you yet? I started crying and asked what that meant and he said I would have to go to emergency surgery and have my appendix removed. I was hyseterical and only had a few min to call as many people as I could and start writing down all Baybes directions for meds and stuff. No one answered there phones so i was freaking out and leaving messages. Finally I got a hold of my step mom kathy and she told me she would find my dad and be there right away. I dont remember much after that but I know everyone was there and my sister lissa took Baybe to my house for my first night away from her ever. Baybe seemed to do fine although you could tell she was confused and missed me. I woke up in so much pain the second day. I felt like they did something wrong to me. It looked so bad and still hurt really bad where my appendix was. The surgeoun got all defensive and acted like I was putting him down but really I was so out of it and in so much pain I couldnt even think strait. I left the hospital that day but woke up in so much pain the third day that I went up to ohsu for a second opinion. They said I may have popped a stitch inside coughing so I am now on a long painfull road to recovery. I cannot pick up or hold Baybe at all which is so hard on both of us. I am relying on the other two kids to help me with everything because I cannot move. I am having a hard time figuring out how to go get groceries and make dinners let alone clean the house. Im not quite sure how this fits into the everything happens for a reason category but wele ge through this too I guess. Im really bummed because Im suposed to be planning lalas bday party and then mine is the 14th but I cant do anything. Pretty much the whole rest of my summer is shot. Im on the best pain medicine there is and it still feels like im being stabbed everytime I move. Il put some pics up when I am feeling a little better, I have three nasty wounds!! I hope you are all having a better summer than us, love and peace.

Lovin Summer

Things have been going really well for the last few weeks. The most important thing going on right now is that Baybeblue is comin off her klonopin/clonazapam very well. She started out at 1/2 a pill in the morning and 1/2 a pill at night, then I dropped it to a 1/4 in the morning and 1/2 at night for a few weeks, then I did 1/4 in the a.m. and 1/4 in the p.m. and now we are down to "0" in the morning and 1/4 at night. She is very alert and is constantly moving and trying to get up. She has become very attached to her binky and now demands to have it all the time or else she is looking for it. She hasnt increased in her seizures at all but I have noticed some possible seizure activity involving her eyes. Its hard to tell because coming off the med is making her see clearer so she is always doing strange things with her eyes. I was suposed to have goten the new depakote by now with no sugar in it so we could get her levels more in range but when I went to go get all the meds there was a mistake on the new depakote and there was two sets of directions and two doses so they had to contact the doctor and I am still waiting three days later. Luckily I found a back up bottle of the liquid depakote so I am using that til they get it together. Also I have been dealing wih some bull having to do with her wheelchair/stroller that she is getting. I appreciate it so much that we are able to get this for her but when it was taking longer than it was suposed to I called the company and they said that the doctors never sent this paper called the medical necessity form so the process was just on hold. I went to ohsu that day and talked to dave olson and told him the paper wasnt there and that was the only thing keeping her from having it. He said that he would fix it so I waited. A few days later I contacted the company again and they said they hadnt heard anthing and told me that this usually doesnt happen and someone was dropping the ball in this situation. I called her primary doc and left several messages and finally a week later got a call back from her directly. She said she was sorry about the miscommunication and she would contact the company directly and fax them the paper and call me back. She never called me back so at 4pm I called the company again and they said they never heard from the doc. AHHHHHHHHHH. So Im not sure what the hell, but after they get that paper it will only take two weeks so Please let them get there stuff in order and help me out before I break my back. I also called the main manager of the tanning salon partially to tell them that I wouldnt be able to tan this month because of my financial situation and to ask about the progress of the fundraiser they were planning on doing for Baybe. The women had no idea who i was and said that they denied my request to not have to pay for the two months I was hospitalized with Baybe and didnt tan one time. She said that she would have someone call me but she never did so I dont know if they are still doing it for her. Makes me wonder alot about what he story really is. I took the plunge and went to my school to re-enroll in school. It is going to be so hard and take so much away from Baybe and the other two kids but I have no choice. EVerything has fallen apart in the last month and I have not had one day that I have not felt over whelmed and am constantly thinking about how I can come up with some money so I dont get any further behind. I am going to work with a career counceler but couldnt get an appt until aug 11. They will hopefully figure out what my options are for a career now and what classes I need to take to get there. Im very nervous and especially because they said that because I am enrolling late that I wont get any money for my books n tuition so I will have to come up with that money myself and then they would pay me back. So I am going to have to go to school for a while before I will be able ot get caught up on my bills. I cant even think about how hard it will be to stress about my bills and my school work on top of the kids. Makes me wish that august didnt even exist because it is going to be hard and that is suposed to be the best month in the year because it is my birthday on the 14th and it is lalas bday on the 7th. I want for my birthday this year to just have one day with no worries. I am very excited because I get to go to my favorite resteraunt for my birthday and I get to intoduce my family to the place. It is morracan food with belly dancers. The other two children are doing well. Taylor is spending a few days with his dad and Im missin him very much. He has mad some good friends in the neighborhood and spends most his days of summer outside playing with them. Layla is busy planning her birthday party which this year will be a dance party. I told her she could invite as many people as she wants. I will empty the garage and decorate and get some snacks and music. She has begged me for months for her gift she wanted from me a guinea pig. We went around to all the petstores and suprisingly enough there isnt that much selection and the one she fell in love with got sold and they didnt think anymore were coming so we found one that was the right price and realy super cute for what its worth so she got it early. Not sure what his name is yet but he is really pretty all black with long silky hair. I always thought they were mean but he is so sweet and makes cute noises. I wish I would have had one of these when I was little instead of the rats. The coolest part is they eat veggies not anything gross. I hope everyone is enjoying the sunshine it is going to be super hot outside this week and Im excited to play outside with the kids and get a free tan haha.

G-tube blood

Had a little scare yesterday when we woke up there was blood all around Baybeblues G-tube hole. I cleaned it and wasnt too freaking out until she threw up. I was more worried at this point but still was just watching her closely. She was also making alot of noise trying to talk which she usually only makes noise when she is in pain or upset about something. Then she threw up again which is totally out of the ordinary and dangerous considering that she asperates anything that is in her mouth. I called the docs and they wanted to see her so up to ohsu we went. They checked her out and said she looked fine and to watch for blood in the vomit or trouble breathing or fever and bring her back if it starts bleeding again around the tube hole. Shes doing fine today and there is no more blood. I actually think that the more vocalization might be connected to me lowering her dose of klonopin(clonazapam). She is now taking only a quarter of a pill in the morning and a quarter at night. She is super active which might be why the tube hole got irritated and bleed. She is trying to talk and making all kinds of crazy noises its so cute. Hopefully next video will be of her doing this and trying to talk. In the next few days I will pick up another new med change. I finally got the valporic acid to be switched to a sprinkle form that doesnt include any sugar so she will finally be completely sugar free and can be fully ketonic. Over last few days her seizures have been really small. The days before yesterday she didnt have one all day and we were all talking about how great it would be if that was the first day she didnt have one and then she had just a tiny one while she was passing out but it was so weak you could barely tell. Today she has had one and it was medium and other than that she doing good.

The other two kids on the other hand are giving me pains where I dont even know you could get pains. They are fighting constantly and have no interest in trying to improve. I hve now run out of things to take away from them trying to get them to be good and still nothing. Yesterday when I had to take Baybe to the hospital they were at eachothers throats the whole time and when I finally told them they were grounded for the rest of the day they both started balling out of control just in time for the doctors to walk in and witness. Its so hard because I want them to have an amazing summer but they keep getting in trouble and I have to ground them. Taylor decided to jump up and run across the hood of my van and dented it. I am trying to teach him about respect and hes just in his own world. Lala is just caught between being a kid and trying to grow up so she bounces back n fourth between acting like a little kid to acting like a mom i 2.2 when she should be acting like a young lady. Im just gona focus on pullin gthis family together as tight as I can and hopefully they get out all there crazyness before the new school year.

Hope everyone is having a great summer, Peace & Love.

YAY today was a good day!!!

Today was Baybeblue's first follow up appt with her favorite Doctor neuro Dr Coryell. He said and I quote, "Baybeblue is doing quite well. I am happy to see her improved developement." So he decided that we could slowly try to take her off the klonopin and see what happens. She was alert and active for her appt, even rolled over and smacked her head on the wall. Overall things went so well she doesnt have to be seen again for 3 months unless something happens. her 2 seizures a day have now turned into 5 or 6 way smaller ones so I dont know if this is a good thing or a bad thing because they are much weaker yet more frequent. We talked about getting her depakote turned into pills so that we can get the last bit of sugar out of her diet for full hetone levels. That on top of changing her formula to stronger levels should hopefully get rid of the last few seizures. I am so happy she is so happy and doing so well. I met a family at the hospital with 2 beautiful children and hopefully made them feel a little better. ther youngest was about 2 and had to be hospitalized with a feeding tube up his nose because he was not gaining weight and they have no idea why. They were scared and had alot of questions. The saddest part was that on top of everything they were concerned for how they were going to pay for it. I guess ther isurance does not cover the hospitalization and it made me sad. I couldnt imagine dealing with the pain I went through and be trying to figure out how Im going to pay for it. Thank god for the Oregon Health Plan. Its pretty sad that I am in a better position than them because I am single and broke. I gave them my blog info and the youtube video info so they could se eme putting the tube in myself because they were nervous about it. They were a beautiful family and I am praying that everything turns out ok for them and that they stay strong for eachother.

G-TUBE ADVISE-I have been thinking alot lately about the g-tube that is in Baybeblues belly. We are suposed to get it changed soon to the mickey button that we originally picked out. We just had to have this one for now because thats the one they put in during the surgery. The thing is that the resons that I didnt want this tube are different now. I like the mickey because the feeding tube locks in and cant be pulled out. Now that I am experiencing it I realize that if it cant pull out of the button than if it gets yanked on then it will pull on her belly and that would hurt her very bad. I like that it pulls out if it gets stepped on or something I would rather have a little spilled milk then her whole inside stomach contents. I liked the other one also because It can be changed at home without going to the hospital. Now I realize that this one wont fall out so I dont have to worry about having ot put it back in and it doesnt have to be changed as often so its not a worry. I also am thinking about the biggest issue that I have found that it hurt her when she lays on her belly because it sticks out a little but the mickey sticks out atleast twice as far so she would never want to be on her belly ever. Basically what I am saying is that I think I was wrong about that button and I think the one she has now is better. It is called a bard button.

Just because several people have asked me I thought I would let yall know that I never got my little break I was talking about. It wasnt that I didnt want to do it but it just didnt work out. I am hoping that it will happen soon maybe for my Bday that is coming up in August. I also had a thought today about applying for a grant to open a gym for people with disabilities. There could be all kinds of equipment and a therapy pool which there is not one in the area. It has to be a cirtain temp to be able to be theraputic. That would be so wondereful I could just work there and spend everyday there playing with Baybe. I have also decided that Im almost positive I will have to go back to school next term because everything else in my life besides Baybeblue is starting to unravel. My internet/cable/and phone line got shut off because I just couldnt pay the bill anymore on top of the other bills. I am now using my wifi to pick up the neighbors internet and have a terrible signal so its very slow and not always there but im makin it work. I dont mind the cable being off but the phone line made me feel safer because if something happens to Baybe than I can just call 911 and continue helping her and they find me but on a cell then it is a much longer process. I should have known that it would not workout but It just takes so much time away from Baybeblue. I wish there was another way because Im sure there are so many women in the world that are in the same situation. I just dont feel ok leaving her with anyone so Im screwed.

Disabilities Advice- I found out that I just need to go to the state parks office near loyd center and fill out the paper for free camping pass and have a doctors note stating her disability and thats it I get a free camping pass for life to all state parks. how great is that? It also allows us to get a cabin or yurt with wheelchair access and electricity for Baybes machines!! Im gona start planning our trip right away I am very excited because I didnt think we would be able to do anything like this for the summer because of the electricity problem for her. This is perfect.

(ABOVE) I added a few picks of dinner at my dads when Baybe was interacting with her amazing cousin Elishuba. They were so cute together. Elishuba got a little frustrated that Baybe didnt interact with her as much as she would like but it is going to be amazing to watch ELishuba grow being comfortable around a disabled person which is something most of us do not know. I cant wait to see how she adapts herself to play with her cousin Baybeblue.

Baybeblue update

I havent blogged for a few but it is for good reason and that we have been busy havin fun together. Baybeblue is doing great with no problems what so ever. She is still having two seizures day but they are really mild somedays. I added a new video of how her seizures are right now. I have a tip on caring for the G-tube. Baybeblue was growing some extra skin around her hole and it was becoming irritated and causing it to bleed a little. Some people said it doesnt hurt at all but some said it can be painful but everyone saud that it would have to be removed in the clinic with some stuff that kills the skin and it would dry up and fall off. Again some people daid it doesnt hurt getting it removed and others said it hurts very bad so I was worried. Then we saw another doc and he predcribed me the cream trimcinoloe acetonide and told me to put it right on the skin myself. The skin just slowly went away and disapeared with no discomfort in like two days. Now everytime I see a little growing back I just add a little cream and its gone, I highly recomend this approach. We have been enjoying the sun very much and have adapted to Baybe. I am using her bath chair outside in a kiddie pool to let her play in the water and she loves it so much. We have hit the public pools too and even though I haven had the nerve to put her all the way in the water, she loves putting her feet in and handles the sun and heat very well. We have been working on some new hand signals so now she is waving "hi" and "bye" she is blowing kisses, saying more and all done and most recently learning peek a boo and clapping for fun all in hand signs. She is crazy active and it is really hard to keep her from getting all wrapped up in her cords. I talked with her ketogenic dietician and asked if maybe we could make her a little more ketogenic to try and knock out the last few seizures a day. She said it is possible so in the next few days I will be switching her formula recipe to put her deeper into ketosis. Im really wanting to have some great things to tell by the time we go to her next neuro appt so they will take her off some of the meds.

Just like I thought I am very stressed out about my financial situation since I am not going to school. I actually think that I am going to have to figure out a way to go back as soon as possible so that I dont get too far behind in my bills. Im going through this whole transition phase in my life right now I guess. Not only because of my situation with Baybe or the fact that I am getting old but Im realizing that all of the people who were apart of my life, are just not really there anymore. I dont think that any of them mean to be gone, its just kind of like whoah I woke up one morning and realized that all of my friends are in relationships or super involved in other things going on in there lives and no one just has time to hangout. I dont know anyone who is a single mom like me. I dont even know anyone with kids to hangout with its crazy I have always had tons of friends. Its hard when your in my situation because you dont want to try to hard and force yourself to be around people you dont really like but then if you ont try then you will just sit in your house and never meet anyone. Really at the age of 30 where else is there to meet new friends besides a bar? I dont want to go to bars and Baybe cant get in anyway so what are my options? I am happy for all the people in my life for finding the next step in there lives but I am just left wondering what mine will be. FInding love is hard enough in this world without all the stipulations that I have in my life, is it even a possibility? I watched that movie, hes just not that into you, and I cant believe what a good job they did showing how confusing and unpredictable yet predictable love can be.

Maybe my first break!

Fathers day is coming up this weekend and Baybe is doing so well that I am considering leaving Baybeblue with her father at my house for a few hours. My other best friend Violet that lives in Hawaii now is coming to visit me and Im sooo excited. She was the one who lived with me through my whole pregnancy and was there for me when Baybe was born. I dont have the heart to tell her she is not the Daddy so she is the papee to Baybeblue. I wish she would move back here and be in my life again but I will just have to settle for breif visits when she comes and hopefullly someday take the kids and go stay with her on the beautiful Hawaii Beach. Oh yeah and I have a severe fear of flying so I have no idea if that will ever happen. Im scurred!! She is nervous about traveling alone so please join me and pray that she has a safe trip here. Anyway, if everything goes really well then Sunday evening I will be able to leave Baybe for the first time and go out for a few hours with my loves Hush n Violet.

Baybeblue has started to have a little bit of weird stuff going on in between her seizures during the day. She still just yells out sometimes and does just the weird mouth thing that used to make her puke but she just does that all by itself. Today she had no ketones and that worries me, also her Blood sugar is still really high even though I didnt give her jello for a few days to make sure it wasnt that. Last couple days she has been really lazy sice we are recovering from the beach but overall she seems to be doing really well. We have moved back down to my bedroom because I really missed my bed and needed a little privacy so in a matter of one day she clogged her cord so formula leaked all over my bed then her diaper leaked on it and then she was rolling around and pulled her cord out and leaked her stomach contents all over my bed as well. Needless to say I had to rewash all y bedding and now I have laid down all waterproof pads. My bed feels so amazing and I think she missed being down here too. Now I just got to get Tay to not sleep in my room. I love him to death but I really need some privacy. I have a twinkle in my eye this weekk because someone made me feel good so thank you and I hope you all are having a good week too.

Were Back

yay were back home safe and everything went perfectly. We shopped seaside and did the arcade and had a corndog and the tilt a whirl and hit the beach. We spent a whole day on the beach and the weather was beautiful. We did a perfect job building our fire and cooked our food on it. The weather was not suposed to be that nice but it was so hot and beautiful I wouldnt have wanted it one degree cooler or hotter. I know it had something to do with everyone that knew we were going praying for our trip to go well. Baybeblue was a trooper through everything and didnt have one single issue. SHe got to put her feet in the sand and loved it. She was fighting me the whole time trying to get out of my arms so that she could put her body down on the sand. I was very proud of my job I did protecting her tube hole and although her ears are full of sand there is not one drop near her belly. We saw the seals last because that is our favorite part and we all got soaked. The drive went perfect and everyone had a blast. It feels so good to know that she can handle stuff like this it makes taken her out to the store seem so simple now. Now its time to get back to real life hope everyone gets there own perfect little vacation this summer

All Good!!

Well Baybeblue had her Doctor Appointments on thursday and she saw a pediatrician that checked her all out and said she was totally healthy and doing great. We got a chest X-ray just to make sure there was nothing starting because of all the coughing and they said it looked really good. It was a little confusing but over the last few days I have noticed that it gets worse when she smells food. I think she is producing more saliva when she smells things and that is making her cough since she has trouble swallowing. I dont know but they said she was good to go to the beach all the way!! Then we saw the CDRC clinic doctors which is a pediatrician and a dietician and one other doctor that I cant remember what she does but they were very nice. They said her tube hole looked great and they didnt even think it needed to have the extra skin removed. They said her scar is not infected that its popping out the last of the stiches. I guess your body rejects them so they pop out of the inside at some point. So shes just throwing a stitch and otherwise they said the scar and everything looks really good. She weighs the exact same amount sittin right at 30 pounds. THat is the same that she weighed before this all happened so shes handling the diet perfectly. I asked for advice about keeping sand and water/germs out of her G-tube hole and they suggested taping seran wrap over it and they wouldnt worry about it at all. The main Doc even said she was clear to swim if we want. All in all it was a great visit to our old home at OHSU and now we are off to the BEOTCH!! Im a little nervous about going with no boys because we have never done the whole bon fire and all that ourselves before so Im sure this will be an adventure. I have the hospital plan all figured out and got some very good advice from our therapist Mary who has taken her children that are disabled to the beach many times.

Baybes seizures have stayed the same still she is having 2 a day and they are the same severety. We were hoping for the seizures to stop completely but this is great. She has developed a small new thing that involves eye squinting during them which Iv never seen so I guess I will hust add it to the list.

The kids had there last day of school yesterday and we picked them up from school in Hush's convertable BMW with the top down and a bunch of baloons hanging out the back. Then we went to pietros for some celebration but by the time we got home we were all too tired to do anything. Now I have a whole day to pack and plan, clean and hopefully make it to the DMV because my darn tags just expired and the last thing I need is a ticket at the beach. Wish us luck and say us a little prayer that everything goes smoothly and there are no emergencies. Ill be back in a few days hopefully with some beautiful pics of all my babies at the beach. P.S. Please be good weather!!!!!!

P.S.S. Layla started her own blog so check it out at http://www.baybesbigsis.blogspot.com/ I havent figured out if there is a way to get to it from my page but heres the link haha.

Exciting news and Bad news

So the good news first... My tanning salon yesterday met Baybeblue and decided that they want to do a fundraiser for her. The Tanning salon is called Sunsup in milwaukie that is where I have been tanning for the last year. Out of everything that has happened, tanning is the one thing that I do for myself that makes me feel good and feel like I am still a real girl. The only time that I have not been able to do this was the couple months that I was hospitalized with Baybe. When we got out I filled out a form asking to not have to pay for the 2 months that I did not tan at all because I couldnt. They still havent responded about that but in the process they learned about Baybeblue and made the offer of the fundraiser. I think that is so amazing ya know everytime I start feeling low someone I would never expect reaches out and touches my heart. Im not too worried about the 2 months of tanning since it is such a great deal at under 20 bucks a month and it is totally worth it for what came out of it. They said they will try to get other local businesses involved too so I will let every one know more info when I get it.

Now the bad news... Although Baybes surgery scar is looking better, she is for sure getting sick. She is running a fever again today of 102. SHe has to take only rectal tylenol for fevers because she cant have the sugar and carbs that are in the liquid and of course she pooped it out as soon as I put it in and I couldnt even find it so looks like were riding it out for 4 hours. I cant give her more because Im not sure if she got some of it or not in her system and Im not gona overdose her so Il wait till time for the next dose. She is congested which isnt completely abnormal due to her asperating everything but I can tell its a little worse than normal. She is also acting like her tube hole hurts which is what she did last time she got sick. Then Layla get up this morning and she totally has that nasally sick voice thing going on, she was fine going to school but ahhhhhh. We have plans to go to the beach this weekend and it is probably the only cool thing we will do this summer and 2 out of 3 kids are sick so far. I can handle it if no one gets any worse but Baybe is at such high risk for getting pnomonia that it could really cancel our trip if she gets worse we could end up back in the hospital. On a scale from 1-10 one being the best, last time we were hospitalized she was a 8 and Id say right now she is riding between a 6 and a 7. SO yeah Im a little worried. Luckily she has dr appts before we go so I know she will be checked out really good anyway. Gota go get ready for therapy hope you all have a good day and wish us luck.

Post surgery scar infection??

Over the last week Baybe got this little scab at the top of her scar and now it has turned into this. I am praying that it is not infected but I dont really know what else this could be. I have talked to the doctors and they said to keep an eye on it and call if it gets worse or she gets a fever and to have her seen on monday. Other than that everything has been going really well. I added a few videos of Baybe learning how to play with her new toys and even one of her first official crawl on her back. Ok well the second cause the first one wasnt on video. I havent goten any videos of her seizures now because when they happen I am so on top of patting her back and dancing her arms around then its over. She is still only having 1-2 a day and that is allowing her to advance so much. she is rolling all over and trying to talk and playing with her toys. She wakes me up by yelling at me and kicking me in the morning and alot of the time in the middle of the night. She likes waking up at 4am and being all cute and then as soon as Im wide awake she passes out. Its like she wants me to stay awake while she sleeps. Then it takes me hours to get back to sleep. I gota say it is all worth it for the big smiles I have been getting everytime she wakes up, she is so happy to be awake. She is restless and does not want to be laying down . I got some good news that when they were taking orders for my supplies I asked them to run the blood ketones checker strips again and it went through so the insurance paid for it and Baybe got her strips. I had trouble with the 500 ml bags they sent me for her food so I had to call and they were really cool about it and sent me out the bigger 1000 ml bags. I dont know why but the smaller bags clog way easier and they were holding alot of the thick cream in the formula at the end of the bag so she was not getting it. THe big ones work so much better. We have a big week of appt's for Baybe and then we are gearing up to head to the beach. I need everyone to cross there fingers for great weather otherwise Baybe will be stuck inside all week. Also we have a feeding clinic for one of our appt's and we will get another swallow study and we are gona hope everytime for improvement. She has her first real dentist appt and a therapist party at my house with physical, eye, and speech therapist's. Im still mourning my laptop and trying to figure alot of other little problems out but overall things are pretty good. I got a real wake up call when we had the storm scare the other day. I had to move all the kids into a room with no windows like they said and I started realizing how much stuff Baybe needs that if there ever was a real emergency it is going to be so hard. I cant ever just grab her and run, she is hooked up to stuff. I hope everyone has a good day and hopefully the beautiful weather will come back.

Back to Life

The last few days have been pretty good. Baybeblue is having only 1 to 2 seizures a day and if I catch her and beat on her back then they are quick and mild, and if I dont stop it then she jerks and whines a little and is mad afterwards. She is rolling around and trying with everything she has to get herself up. Her hole in her belly is still oozing a little bit everyday and I notice if she rolls around alot it bleeds a little. She has started growing a little layer of extra skin around the hole that will need to be dried up and removed. I spent the last week getting all the supplies refilled and got new feeding bags just in time. I got all her perscriptions switched over from the hospital pharmacy to one that is close by and get them all filled and stocked up. The only things so far that the insurance company wont pay for is cotton balls for her diaper to check her ketones, alcohol pads to sanitize the area before I test her blood, rubber gloves to wear when I squeeze the pee filled cotton balls onto the test strips, the bloods ketone strips for a more accurate reading atleast weekly, and sanitized water, I am going to have to get a water service set up because I just think she deserves better than tap water. The guy that works at my tanning salon told me that in order to be a manager there they have to throw a fundraiser. He asked me if he could maybe do one for Baybeblue to help with any medical needs. I think that would be great to help get her one of the peices of equipment that she needs. He said they raise on average around 2000 dollars so this could be great for her. I would also like to use it as an oppurtunity to raise awareness of epilepsy somehow. I think that it will be cool and hopefully it happens, I will announce it on here for sure and make sure everyone knows about it if there is a fundraiser.

I apologize for being a little lagged about blogging the last week or so. I am going through some silly stuff mentally and I am a little off my game. I am a little depressed about my laptop so I havent been online very much and all the plans that I had for kids are not really within reach now that I dont have the financial stability of going to school. I really want to join the eastside athletic club so that I could take kids to do some active things with baybe by my side. They also have karate classes that Tay wants to take really bad and ballroom dancing that Layla is freaking out about. I have to figure out a way to make sure the kids can still do what they want and we can have healthy family fun. The pool would be the ultimate therapy for Baybe who is wanting to be so active but just cant yet.

I am going to add a video of Baybeblue playing with her favorite toy on the youtube strip. I think it will be a nice change for people to see how much she has improved and see her happy not having a seizure. Hope everyone is enjoying the heat and there families, Peace.

Down n Out

Last few days I have been non functioning with a severe toothache. Thank goodness I already had pain meds for my hurt shoulder!! Its like now my body knows it has a break from school so its falling apart. Baybe has fully enjoyed me being able to do nothing but snuggle her. Everything is going really well with her so far. She is still having only 2 seizures a day on average and they are not as severe as before. She is developing quite an attitude though. SHe doesnt want to lay down anymore so she is constantly rolling around whining and demanding to be picked up. She also gets mad after her seizures and complains about it for a while when there over. Every morning she seems to wake up with a little more clearity to her stare. SHe is wide eyed and ready to do something, she just doesnt know what. I am excited to plan this summer and we already have our first trip planned in june so we are keeping our fingers crossed that everything goes well. I am taking my two best friends Tianna and Hush and my favorite boy besides my own kids Brannon. I will be mapping out trip to hospital from there, it looks like it will be seaside providence if anything goes wrong but were gona hope for an uneventfull relaxing trip. I am trying to plan as many things as possible so that I dont get into a funk with all the other crazy things happening around me. I wont mention names on here unless its a complement but there are several things hanging over my head right now that are weighing me down. Its just so hard to believe that with everything that I have been through with Baybe there are still all the other parts of life that can hurt you and get in your way. I am becoming somewhat of an introvert and I dont really like it. I need to figure out some fun things we can get out of the house and do that arent too difficult for Baybe. Its too bad that the one thing that we all loved to do is go camping and that is just not possible now with all Baybes electrical things she is connected to. I am going to have to come up with some alternatives. The beach house will be perfect though because it is really nice for Baybe and there is a pool for the kids and right on the beach for some crazy time and shell hunting. Im excited to watch hush try to fly a kite again. If you know her you would be laughing right now. Hope everyone is enjoying the weather that what were gona do today.

All About the Ketogenic Diet and Other Diagnosis

I thought this article from Epilepsy.com described the diet pretty well for all those that are interested in learning about it. http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet

Also Check out: http://www.charliefoundation.org/ This is a website made by the parents of a child with the same condition as Baybeblue

And: http://www.ninds.nih.gov/disorders/infantilespasms/infantilespasms.htm This is info on infantile spasms itself which is Baybeblues main diagnosis right now.

And: http://ohiolionseyeresearch.com/cortical_visual_impairment.htm This is a website explaining Baybeblues eye condition that prevents her from seeing.

And: http://www.about-cerebral-palsy.org/definition/index.html This explains her condition effecting her muscle control cerebral palsy.

Hope these are helpful in understanding what we are dealing with.

By the way---- BAYBEBLUE DID NOT HAVE A FULL SEIZURE YESTERDAY. On May 17, 2009 she had two small episodes that were like she was going to have a seizure but it didnt go fully and she didnt cry at all!! That is the first day in as long as I can remember that she has gone this long. Im so scared and excited at the same time. I am excited that this could have really worked and Baybe can have some relief but at the same time I know not to get my hopes up or let my guard down. Today marks a positive point regardless so I am celebrating. She is becoming more aggressive in her actions everyday and last night she wouldnt let me put her down. SHe would whine and then I would hold her and she would pass out. Then I would try to set her back ddown and she would start whinig again until I held her. I dont even understand how she knew since she was asleep. She rolls so hard into me at night that she ended up pushing me to the edge of the bed and smothering her face in the pillow. I keep rolling her back over onto her back and she just rolls right back torwards me. I love it, but I need a bigger bed eventually. For now I have her baby mattress on the floor in the living room and at night I lay a mat next to her to sleep. She is rolling off her bed onto my mat and pushing me off. I will add a pic of how I woke up this morning.

What a Beautiful Day

Things have been going good since we have been home. Baybe is having 2 seizures a day on average and becoming more and more alert everyday. She actually started crying a little today and stopped when I picked her up, how amazing to feel like she just wants to be held and is able to tell me. Her congestion is clearing up a little more everyday and no more fever. During her seizures she is still crying at the end from the jerks but I am able to comfort her and calm her which is good. Its so crazy that she doesnt have the seizures all the time. I didnt even realize how frequent they really were until they slowed down. Baybe is enjoying very much her little tasts of jello on her binki a few times a day pretty sure strawberry is her favorite. Today we got up and went to the park and then to the pet store to get our turtle Franklin a new tank. We had an amazing time and Baybe did great being out. It was the first day that I just got up and realized that I could just go spend time with them because nothing else was happening. The turtle is soo happy with his new crib, and he deserves it hes like 15 years old. Layla is trying to talk me into letting her start her own blog. Im not sure how I feel about it, she wants to tell her point of view of the Baybeblue story like from a sibling perspective. I will let you all know if I decide to let her. Taylor is doing great, we had our first serious girlfriend boyfriend talk and he shared his first kiss story with me. Im so screwed. He is only in third grade and already stuck on girls. I just told him all about mouth diseases and how if he gets one then no one will kiss him, and made him promise, I will always be his number one girl. But Im pretty sure Im still screwed. Layla I think would probably beat a boy up if he tried to kiss her. My new idea is to start training my chihuahua T-bella to detect Baybes seizures. I got some really good treats and everytime Baybe has a seizure I am going to call Tbella over and give her a treat and have her stay for the seizure. Then hopefully with time Tbella will get excited before Baybe has a seizure cause she thinks she is going to get a treat, that will alert us there is a seizure coming. Dogs are know to detect seizures and they can smell a scent that is released from a person about to have one. Tbella is super smart too, she also has videos on my youtube where she is singing. That is one of her many talents. I think you can find the videos by typing in her name on youtube or going to my youtube page by clicking on one of Baybes vidoes while it already playing. http://www.youtube.com/watch?v=JleQL3_CGWk They are really funny. I am going to hangout with the three coolest people I know and have a good night. Hope you all do too.

Hello Im back. We are home again and although she is congested still, she is breathing good and happy to be home. The rest of our hospital stay turned out better. We got our favorite nurse Stephanie for both wed and thur. Wednesday night Baybes whines during her seizures turned into a screaming cry along with little jerks like before. But at the same time she is down to 1-4 seizures a day, a month ago she was recorded having 50 a day or more. That is amazing and I have to give thanks to the diet. Its crazy because in the bible when people were reported to have "fits" which is what they called seizures then they would fast until the seizures were gone. THis diet mimicks that same effect. I will add some info about the diet later for anyone curious. Now the next step is to hope that when we do start taking meds away that they dont come back. It would really suck for her to have to stay on the diet and the meds because of all the side effects are gona add up eventually. She could end up with kindney, liver and gastro area problems, heart problems and many more. She was really alert for the few days she was in the hospital really sick. She woke up early and stayed awake all day and then stayed up til after midnight. Now shes back to her old sedated self and sleeping most of the day. I have decided that being trapped down in my room with her was not good for either of us so we have now moved upstairs and I have given up my bed for a mat on the floor next to her bed. I have to say that its alot easier to be up here in one spot with her thousands of medical supplies. OMG I woke up this moning and pulled up Baybes shirt and she had little white chunks on her belly and her belly tube wasnt attached. The tube was tucked in between her legs and she rolled over to me and pulled it off. I was worried that the whole to the inside of her was going to be clogged cause the thing was just hanging out open all night. But the confusing part was that there was not a drop of liquid anywhere so it had ot have been after her formula ran out or else it would have squirted everywhere. ANd for whatever reason her belly didnt leak out anything either. So I just gave her a new tube piece and fluched it through a bunch. I did vent her belly and got a big burp so she must have been sucking air through the hole. Haha and gross at the same time, I know.

Im gona hope and pray that we get to stay home for a while and make everyone be more careful when they come around her so she doesnt catch anymore viruses. Time to focus a little on getting kids into some extra activities and taking care of myself. I feel like such a huge relieve off my shoulders taking a break from school, It is sad but had to happen I know that. I am very thankful for the talk I had with the social worker at the hospital. SHe really made me feel better about the whole thing. She made it seem like it wasnt that serious like I had built it up in my head.

Thank you to Tianna for making that post for me I was so mad while I was at the hospital I started having trouble with the screen on my laptop and by the end of the day it looked like black ink leaked all through it. I am hoping to be able to get some of my stuff off of it but not sure how. Probably going to have to hook it up to the tv. So the bad part is that if we have to go to the hospital again I wont be able to blog. I did find out that Kristy Heely mad it so that Baybe will be followed by our favorite neuro Doc Jason. It will be him and Dr Roberts that we will start having clinic appts with if we ever stay out of the hospital long enough. Im also excited to get her back working with her physical therapist Kathy and her eye therapist Mary. We both really miss them. They have such a great support system through all this. They have gone out there way to come see her in the hospital and are very understanding when I accidently forget to tell them we are back in the hospital so they show up at my house and Im not there. Unfortunately this has happened quite a few times but they never get bothered by it and I am soooo thankfull. Mary is a great advice person because she has adopted like four kids with disabilities that all had feeding tubes and every single problem that Baybe has. She even has a dog with seizures. Hope you all have a good day.

Hello everyone and thanks again for following this beautiful and precious baby's story... Unfortunatly, Cyndy's laptop has completely quit and she and Baybeblue do not know how long they will be in the hospital. She has asked me to let you all know that she is so greatful for all the support and will post an update as soon as she can find a laptop (though we really don't know how yet) But please keep praying and thank you all again! Tianna

Day Two back at OHSU

So this day sucks so far. We woke up all night because they mixed the formula with cold water again and the pump clogged repeatedly. I was so delerious that at one point I got up and shut it off. I am dealing with my monthly friend and no sleep and alot of stress which is not a good combo. I started trying to do school work and everytime I started then a new doc would come in and ask a million questions. I felt at one point like I was in a scene off of scrubs when a group of docs came in and they were all listening to her lungs and breathing. One doc held the stethascope under her nose to listen for a second. The one doctor said now who knows why she held that under her nose. They were all stumped. One said to listen for congestion in her nose. I raised my hand and said that sometimes when you hear congestion in the lungs it can be an echo off the nose area or the tubes coming down to the lungs. So you want the nose breathing to sound different than the lungs so you know your not hearing an echo. Ha She said that I explained it perfectly. I still had no familiar faces today and I started to get a little overwhelmed. THey didnt know anything about the keto diet and they didnt have the supplies ready that I needed and no one knew anything about her at all. I started crying and told them this is alot to deal with and usually when a parent ends up here with a child it is after several days of sickness and most likely some nights without sleep and I really felt like they werent helping me out. The nurses I had before were so sweet and helpful and real down to earth people. So they have given me crap about having a sprite which I was offered everytime I have ever stayed here. They had no sterile water on the floor which is crazy in a hospital, last night they told me that I couldnt order dinner cause it was too late and today I saw a sign saying that people could order dinner all night now and the grill was even going till 11pm, We were put into a room with a rocking chair and a guest bed all the way across the room so I had to rearrange the room and move her and her equipment over by me. all in all Im just really cranky about this visit overall. I called Kristy Heeley and she was sooo sweet and calmed me down. She explained that we r under the care of pediatrics instead of neurology so thats why all the new faces, and thatshe would have someone I knew come see me to make me feel better. She said she was thinking of us and would come by tomorrow. A new neuro DOc came to see me and I almost started crying again because I only wanted to see neurology for a familiar face and she was the only neuro fellow that I had not met. She apologized for not being Jason and explained how the rotations work but that Jason and Dr roberts would still be following her care. Kerri Stuhlsats her Ketogenic Dietician came to see us and Iwas like YES I know you.(She looks exactly like Pam from "The Office") We had a good talk and she said if Steve form speach therapy approves it we can start giving Baybe a few licks of some formula or keto cream or maybe even sugar free jello. Havent seen him yet still waiting. We have tried several times today to take her off the oxygen to see if she will breath on her own and have had to put it right back on but as of now it has been off for a half hour and is doing great at 95% oxygen. Her ketones are still good and high and her blood sugars are going back down closer where we want them. For now I guess there not letting us leave until she is breathing good on her own and is getting better not worse. Hoping by tomorrow.

Today after my mini breakdown I tried to get into my school work and I was thinking, What am I doing. Baybe is sitting here struggling to breath and all she has is me. I should be holding her and loving her. What if something happens to her and I would never forgive myself for not spending this time focused on her. Not to mention my other two children. I am gona be so screwed financially now but I did it, I dropped my classes and took a medical leave from school. I cried really hard about that. I just feel so defeated. I was doing so good too its not like I was already failing, I was just taking too much time from her and overwhelming myself. I got it all set up for whenever I decide to come back I can continue on my path. For now I have all the free time for the kids and Im broke. I would rather be broke then to not be there for her anymore. Shes sittin in my lap right now helping me type on my crappy laptop. The stupid space button got stuck and when I tried to fix it I ripped it off accidently kinda. Hence the words with double spaces or no spaces at all like before. I gota get one of those mini laptops so I can take it wherever we go easier. This laptop doesnt even hold a charge so Im power cording it everywhere.

Hopefully we wont be hospitalized for too long this time. The diet is going great, we just have to figure out why the breathing problems and hope its just a bad virus. Im not trying to go home with and oxygen tank and a nebulizer machine. Send Baybe your prayers and hope she recovers soon so we can get on to new things like removing some medicines.

Re-Admitted at OHSU

My Beautiful Children

So after friday night things just got progressively worse. She started acting like something was hurting her everytime I moved her or even rolled her onto her side. The fever continued and her breathing got increasingly worse. Saturday after recovering from our late night trip to the E.R friday taylor decided to fall and really hurt himself. He fell getting into my van and bent his foot and hurt it. He cried most the night and slept right by me so when he fell asleep I grabbed his foot to see if it was really hurt and he screamed out in pain. OOps I guess it really hurts. I would have taken him to the hospital if I wasnt worried about how bad Baybe was doing too and it was a very overwhelming feeling. It was the first time that I had to deal with more than one child injured or hurt at the same time. I couldnt focus on my schoolwork or anything else for the rest of the night. Sunday for mothers day I woke up and took all the kids to the ER in milwaukie to get tays foot xrayed. They said it wasnt broken but badly sprained so he would need a special boot and crutches until it didnt hurt to walk, so crutches and all we went and had our pictures taken and they turned out great except I can tell Baybe doesnt feel well in the pics. All night sunday night to monday morning her pulse oxygen alarm was going off continuously because her oxygen level was too low. When I got up Mon morning she looked very pale and sickly and was breathing very hard and moaning in pain. I went to move her and her feed pump line had pinched itself under her booty so it blew the seal and had been leaking under her diaper all night. Luckily non got on her because it was right under diaper but it soaked deep into my bed and the new pad I bought for her to help from bed sores. I called the doctor and kristy heely but she was getting worse and I didnt want to wait for calls back so I just took her back to the E.R. We arrived at about 10am and got right in. Her fever was 102 and she was having a very hard time breathing. They put her on oxygen and her level went up to around 95 which is still not 100 but better than 75-85 like it was before. They said her lungs sounded really tight and they wanted a chest xray and a treatment of albuteral through a nebulizer to help her breath. After the treatment they sound she sounded a little better but not great. She also developed more of a rash on her arms and legs and chest and was still very pale. They tested for the flu and for RSV which thankfully neither one was positive and the chest xray looked pretty good so now what? They gave her another treatment of albuteral and again she sounded a little better but not great. They told me we would have to be admitted until there figured out what was going on and she was breathing on her own again. So now she admitted back at Doernbecher in the same wing as last time although somehow there is all new doctors. I had to tell this whole story over again and answer a million questions and finally just got a chance to stop for a min and it was already 7pm. They gave her another treatment of albuteral and said they were going to give her some steroids to help her lungs, and respitory therapy would be coming in every two hours. They swabbed her for a few more tests and now we wait.

I had to pick the kid up from school early so I wouldnt have to worry about having no one to get them and they are really bummed. I feel like im in the twilight zone after how long we have stayed in this hospital it is really weird having all new nurses and doctors. I havent really felt that same sense of warmth that I felt before yet this trip. Im going to snuggle up my Baybe now and maybe catch up on some schoolwork that I have since I am so far behind now that this weekend was so full of STRESS that I got nothing done. Send us your love have a good night.

Back To E.R.

Last night at 8pm Baybebluewoke up from a nap and felt a little warm to me so I got the thermomater and started changing her diaper and she turned totally pale and started shaking all over. she lost all the color in her face and lips. She was shivering but like on the inside of her body like a vibration. I tool her temp and it was 101.9 so I called the oncall pediatrician at OHSU and she said she knew Baybe and said if anything got worse like her fever or her overall staus than to bring her in to the ER. I waited about 20 min and then took her temp again and it was 103.9. I called my sister who was out to dinner with my mom and they came back as fast as they could and then I took her temp again and it was 104.3. I called back oncall doc and got a different one that didnt know Baybe that actually asked me what my question was after I explained everythingto her. I said never mind and decided I needed to just take her in. Layla and Taylor got really upset and they didnt want to leave but I had to send them with my sister Lissa to stay night and my mom came with me so that I didnt have to drive in the dark with Baybe alone. Taylor was crying by the time he got into the car and It really broke my heart. We had just got pizza and movies and everything has been going so well that it was just a big blow to them. LAyla left a note for her Dad that read... Baybe had to go to the hospital again she is having muscle spasms and full ketones!! I guess I need to be a little more clear with them of what is happening so they understand but her explanation is very cute.

We got to ER and one nurse came in and barely stuck the thermomater under her arm and took her temp. It said 99.0. I felt her all over again and after waiting ten min or so I went and found a different nurse and asked her to come take my daughters temperature right. A little bit of attitude later and she came in and did a temp and it was 102.5. IDIOTS. Anyways now they gave her some tylenol which has to be a cirtain kind due to diet and we waited again forever. They tested her pee and checked her out and everything looked good. They checked out her little rash and her tube whole which was lookin a little red today so I was hoping that wasnt infected, but nothin. Her fever went down and at 2 am they sent us home with some more special tylenol and told me to come back if she got worse. So Im glad she is ok just add it to the mysteries that are Baybe.

Today I have to do more schoolwork than I ever had to do before. It sucks cause I just want to spend time with kids today and tomorrow is going to be crazy but Unless I want to do school work on mothers Day or start of another week behind then I gota go. Peace and Love!

New seizures

I got a video of her new seizures, should be first video on here now. There very strange but no clenching or breath holding.

Today is the day I will talk to Kristie heeley the neuro nurse to decide if we can take some meds off. My Mom is here and everything is going pretty good. day before yesterday Baybe had 4 seizures, yesterday she had only 3 and bothe nights there was no significant seizures enough to set off alarm. Also I found an old container of Keto cal formula that had a sticker on it that said the formula needed to be shaken every two hours. SO I decided to split the days formula into seperate bottles so every few hours I put in another well shaken bottle in the bag and for whatever reason it worked and we slept the whole night with no alarms from the food pump and she got all the formula because it didnt clog, it ran until it was gone. Yahh hopefully Its fixed and not just a flook, or fluke whatever.

Layla and Taylor are doing great too. We are back to only stressing about boys and clothes and Taylor ruining every pair of pants he has from playing soccer in the mud everyday at school. I love the little drama because Its not there when the big problems are. Im workin now on trying to get them both into an extra activity just for them. We are debating between Karate and hip hop dancing. Im leaning torwards the dancing because then they can dance for me and entertain me. I could watch them dance and sing all day. They have some videos on my youtube of them doing there stuff. You can get to the other videos by clicking on the video itself again while its playing. I am loving having all my kids home and safe.

So the stupid blood ketone test strips that I need to give the dietician some exact results as soon as possible is not covered by my insurance. The company said to go to a pharmacy and buy them myself. I went to a pharmacy and a medical supply store and nothing. I got online and called every pharmacy and nothing. I called prov med supply back and they said they do have some(why didnt they tell me that before?) but they cost 50 bucks for 10 test strips. I have a feeling they might not let me make any med changes until they have the results to these test strips. Hmmm!!

Still struggling with my school work a bit. I just really need to figure out how to take the summer off so I can just hang with the kids. I just gota go like a steam train and get through this term strong and hope for the best. I cant believe there is only about a month left of school, this term is just flying by. I am still a week behind and I need to catch up before finals. AHH. Ok I got this! Im really loving my child health class, I wish I could just take all classes like this. The hard part is that there is nothing that I could do employment wise that would come from taking these classes now. I will always have Baybeblue by my side and that is the way I want it to be. I will have to change gears in the next school year to find a career that will accomodate for Baybe and her schedule. Any ideas would greatly appreciated. I would love to just give advice to women. I want to just help every women in the world be a better person an be happier. That would make me feel good.

Im still dealing with the fact that we are not letting the situation that happened at legacy go. I want to know the truth about what happened to my daughter!! I feel sometimes like I am the only one who really cares about getting to the bottom of things so this doesnt happen to someone else. People need to know about the healthcare system and how scary it can be. They are just people too with there own agendas. Its a long process I guess.

Love you all, Thank you so much for all the support. You have no idea how much it means to me just to see that people care. It has made me feel so different about life and the world. Hope you all have a great day.

We made it at home a week

The last few days have been interesting. Baybeblues seizures have totally changed. Now when I see her flickering her eyes I start patting her on the back like we used to and it keeps her from clenching up and holding her breath. Then she goes into like a state of panic instead and does a little whining cry and then its done. I will try to video tape one of these new ones but mostly I have been worrying about getting them to stop by patting on her back. If I dont start patting soon enough then she clenches up. Yesterday Baybeblue only had one seizure all day, granted she is very sedated still from being on the diet and the meds at the same time so she is sleeping all day and only having awake time in the afternoon and evening. SHe is alert and seems to be happy during this time and is becoming very clingy to me and even whines a little when I put her down. Last night the pump drove me crazy again and Im not sure what is going to be able to happen with that. The medical supply place says that they only have one other pump and it is not portable so that really sucks. I need it to be portable because she is on constant feeds. But the other problem lies in the bags because Im suposed to be able to take the whole bag and pout it into the fridge if I have to leave and ten hook it back up later, but the pump wont let that happen. When I hook it back up it is clogged and wont work. This is not good only because insurance is only supplying me with one bag a day and I am using atleast two a day because it keeps clogging and theres nothing I can do to fix it. Im not sure what is going to happen when they run out but I dont think I can just go buy these from a store.

Had big one week appt yesterday and everything is going great. They said I did a wonderful job caring for her bed sore and its almost gone already which is amazing, they normally take two weeks minimum to heal. THe burn on her toe from the pulse ox is ok and isnt infected or anything so just stinks to have but is healing fine. Baybe overall was healthy and doing good. I aasked if we could please get her off some meds now because her seizures have reduced and she is just soooo sedated but the Doc said that I have to wait til Friday and talk to our neuro nurse that takes care of everything Kristie Heeley and then she will let me know if I can take any off. I dont understand why they wouldnt atleast want to try taking her off of some but I have to trust them.

My mother is coming to visit today and I am very excited to see her and to have a nice, peaceful mothers day with no trips to the hospital. Il let yall know tomorrow whether we can take some meds off and how it helps or hurts her. Have a great day.

Getting Adjusted

So I called the doctor about Baybes eye and they wanted to see her. We got an appt for 4pm and drove up to OHSU again. Right when we got there Baybeblue opened up her eye and looked like nothing was wrong so I looked super paranoid.

Yesterday when we woke up I was trying to get the whole schedule of everything down and it wasnt going great so I was late on her meds. She was alert and focused and wide awake and then I gave her meds and she passed out. I found a Bed sore starting on her booty and freaked out and calle dthe DOc again. They never called me back but I researched it and decided to treat it with vitamin E oil and zink powder and keeping it bandaged.
Oh my god the food pump beeped all night long and I hardly got any sleep but the good news is Baybe only had 2 seizures all night and 5 all day today which is significantly less than normal. I also noticed that today her seizures were only part of the normal ones. Everything but the clenching and holding her breath. This is really good but she add a little bit of a cry which I cant tell is part of the seizure or a real reaction to something hurting. Im exhausted! Im cant seem to get down a smoothe system with everything and it just takes forever and then I have to clean the house and barely look at my school work and then I still feel bad because I hae no time to just hold her and love her and do nothing else. I haveno doubt that Iwillget it all organised soon enough but for now I need to use more strength than ever before to keep me afloat. Im sothankful to all my understanding teachers or I will be screwed. The other thing is that her ketones are really low now and Im not sure why and her blood sugar is staying higher than suposed to ranging between 80 and 90 instead of 55-80. I called dietician and they said it was ok unless she hadincrese seizures which isnt happening. Baybeblue also got a bad burn again from the sensor on her toe connected to the pulse oximeter. I am treating that with vitamin e also and called doc again. They said I was doing the right thing. I need to start figuring out what to do about getting her a special bed that prevents bed sores because she got one even though i move her all the time. Im super paranoid about that now.