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!!

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.