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.

Were Home!!!!

So yesterday I spent the first half of the day planning for our discharge. We got all new prescriptions that have no carbs and no sugar, got all supplies and equipment that we need, got all instructions of what to do if anything goes wrong, and then we got to go home. Baybe was real lethargic all day and as soon as we got home and put her in my bed she passed out for the whole night. That was sad leaving everyone at the hospital, oddly enough I will miss them all. Then I spent the whole night turning my room into a hospital room and medical supply closet pretty much, and determining all the things I will need to get to make this work. Got her hooked up to her food, gave her a poke and it was 73 which is perfect since its suposed to be in between 55-80. I checked her pee and she still has ketones. I gave her all of her meds.. Levocarnitine, vitamins and flouride, valporic acid, klonopin, topamax, and zantac. I dont think I know if Im suposed to put extra water in the formula or not, gota ask. I vented Baybes belly which means I hook up another tube to her belly hole and let any air come out that might make her uncomfortable. I have tried and so did nurses in hospital but no air has come out so I didnt know what it would be like if it did but last night for the first time I hooked it up and nothing so I pushed on her belly a little and it went bloop bloop bloop out the tube. So now i know and im glad i did it right then.

So I woke up this morning and went to start poking and checking pee and rolled Baybe onto her back and her eye is stuck shut and swollen. WHat the hell? I have no idea whats wrong but I flushed it with water and now gota call Docs again. I mixed up my first batch of Ketogenic formula myself and I defenetely need some more tools to make this go more smoothly. Like a funnel and a bowl with a pouring spot. The powder sticks to everything and has to be so exact. Overall everything is going good so far. I was so happy to be in my own bed and have all three of my kids home back to somewhat normal. Pump is clogging today again forget to say that it clogged last night like ten times. I think we might have to get switched to a different kind of pump because this sucks.

Next few days Im gona spend getting my home back to way I like it and taking care of all the things that have beem let go. Like the lawn omg the grass just started growing like crazy while we have been gone and I got a warning notice from my landlord. (anyone got a good lawnmower?) I gota get caught up on all my bills and get on housing to et me out of this two story house so that Baybe doesnt have to be stuck down in my bedroom all day. Its just too hard to carry her and all her stuff up the stairs and back down. We get her new pimped out stroller in a few months and it is basically like a wheelchair in everyway but it folds up like a stroller so that can fit it in my van. I will add a pic on this blog of her new stroller, her swollen eye, and how well her surgery spot and tube hole are healing, I am so impressed with how good it looks already. Im still afraid to let anything touch it but she has shown no signs of pain.

Dear Doernbecher and OHSU staff that have helped Baybeblue,

So we are being discharged today and I’m really baffled by the way I feel. I should be so excited to get home and really I am, but somehow down deep I feel like my heart has another plan. See, I met these amazing people that somehow manage everyday to take the darkest situations in the most uncomfortable environment and they made me feel at home. They think that I am so strong but they have no idea that it’s them that gives us strength.
When you go to the hospital because your child is ill you become completely vulnerable, you have no choice but to trust that people caring for your child are honest, sincere, and haven’t just come from a horrible home situation themselves. I have had prior experiences and I know there’s no way they can teach caring in medical school, that comes from inside.
So I’m scared and I’m sad. It’s obvious why I’m scared. I have a lot of responsibility to take on when I get home, even more than before and I don’t have a button to push for help. So why am I sad…. I’m sad because I’m leaving. My faith in people and the medical system was crushed before I got here, I didn’t want anyone to touch my child ever again. Now my faith has been renewed. There are people in this world that can ruin your whole day just by giving you one bad look and honestly that is more common than not. You all choose everyday to walk in here and make me feel safe and welcome and like we are all working for a common goal to save my child. I can’t say I’m glad for the bad experiences I had before but It has made it so clear how hard you all work everyday to make positive things happen. I just cant express how relieved I am to have found you all and how much I have grown to care about all of you as well. You have a superstar team with your pediatricians (Dr Newmeyer), neurologists (Jason, Dr Roberts, and the rest of the team), your social workers, discharge planners, Kristie Heeley, amazing team of dieticians, the Xray and mri and swallow study people, Physical and Occupational therapist, and all of the Nurses and nurse aids. I love you all and I appreciate you all so very much. I hope you all know at the end of the day (or morning) how much you are apart of so many lives. You are helping people through the hardest times of there lives. I hope I won’t be back anytime soon, but If we are I know we will be in good hands and that gives me strength. Thank you all for making me a stronger, better person from getting to know all of you.
Love Always,
Cynthia & Baybeblue Campobasso

Hope you kept your fingers crossed

Today is the day we get to go home again, if everything goes good today. Im getting a little sad because I have gotten a little attached to the people here. There are a few nurses that have really just made me feel good being here and I wish there was something I could do to show them how much it means to someone like me in this kind of situation. Im sad because I havemade this room my home and its just gona be scary not being able to call the nurse when something weird is happening. Last night Baybe woke me up at like 4am having a seizure but she was just screaming out these high pitch squeels and screams. Everytime I thought the seizure was over it would start back up. It lasted 5 min and then stopped and we went back to bed. Then Iwoke up a few hours later, its always weird when you wake up and open your eyes and there is three strangers standng by your bed poking at your baby. I felt myself laugh out loud a little and then roll back over and passed out. Yahh I got to sleep in til 8 and I feel good. I got up and started packing and now Im gona wait for the specialists to come and train me to do everything. Please pray for us today that we really get to go home and that I can remember everything they tell me and that we stay home for good. The other two kids really need me, they are falling apart. Taylor cries everytime we talk or he has to leave here and texts me over and over that he wants to be at home with me. Layla needs some mommy attention. Love you all, Thank you for your support.

Oh my goodness

So today was nuts! I started out thinking that I was going to do some school work but I didnt even have a second. The deal is that I had to aquire all the equipment that I was going to need at home and get trained to use it before tomorrow and then we could get discharged tomorrow. So I started out calling around looking for the scale we needed. It had to be a digital scale that measured to a tenth of a gram, and have a power cord in addition to battery power, and be portable. I called resteraunt supply stores and kitchen supply stores and even regular stores like target and no one had any scales that had all three things that we had to have. Finally I decided to call a little store called The Stash. I knew that I had seen scales there so I called and they had a perfect scale that had all three for 70 bucks. My Dad halped me out and went ot pick up the scale and then had to go to medical supply store and pic up the glucometer to test her blood sugar. He came to hospital and also brought the new CARSEAT. It is amazing and designed for disabled kids and goes up to 105 lbs. As soon as my Dad left the hospital the medical supply place called and said they accidently forgot to give him all the supplies for glucometer and pee sticks. I had ot call Hush and get her to go all the way back there and pick those up and get them her so that I could start getting trained before it was too late. SO got all the supplies and was waiting and waiting and I stepped out of the room for 5 min and I missed the dietician so I cant get trained now til tomorrow. CRAPPY! Good new is Hush and I poked ourselves and it didnt hurt at all and we tested our pee and we are both pretty healthy although we both have elevated Ph levels. I am exhausted and overwhelmed.We figured out that the pumps have been beeping every ten minutes because they mixed the formula wrong. Exactly why I need lots of practice before I leave tomorrow. I had to talk to like ten different people to figure out insurance and the new Keto cal formula for Baybe and I think that is finally ok as long as they show up to deliver it before I get home. Baybeblue aslo developed a new sore on the side of her foot. Its a huge swollen lump thats all red. Its not even where her IV was its onw the other side where there was tape so its another reaction so we have to realy keep an eye onit , it might be infected.

So first thing in the morning I will be trained to make her special formula with the scale, poke her and test her blood every four hours, and how to test her pee every diaper with the new test strips. As long as everything goes well we will be home by tomorrow night. Im really gona have to make such a detailed schedule of meds, food, tube care, blood,n urine. She is now on Depakene/Valporic acid, Topamax, klonopin, levacarnitine, Vitamin B6, Vitamin supplimant, and zantac. It will be interesting to see if I have time to do anything else for the next few weeks. I am praying that Baybe is strong enough to fully adapt to this diet. We are basically reprogramming the way her body functions completely. This is crazy but there have been so many miracles with this diet we are excited. I am excited to get home but at the same time I am very nervous. I had an anxiety attack over it today when I went for a walk. Im nervous something else is gona go wrong and I just dont have any strength left. I think Im doing a pretty good job pretending like I do though and I truly think thats half the battle. All I can do is trust god and the world and hope every second that I have made the right choiced so far for Baybeblue. She is so amazing, I would like to get her baptized when we get out of the hospital if anyone would like to join us then leave a comment. And if anyone can tell me how to make my blog read from top to bottom instead of bottom to top i would really appreciate it. I dont like it like this and I cant figure out how to change it for the life of me. Have a good night hopefully I get to sleep later than 4am/

We maybe can go home tomorrow!!

Yesterday was a stressfull day. First Baybeblue wasnt waking up in the morning and when the DOc came it at about 10:30 they said they were concerned because lethargic symptoms are what they dont want to see. They said that if she didnt wake up soon then we would have to do something. They explained that the Ketogenic diet makes the sedating side effects of the medications she is on more powerfull so they usually have to start cutting back meds when the diet starts. They dont want to do this yet with Baybe because they need to make sure that anything they see happening they know its from the diet and not from removing meds. At about noon she showed signs of being awake but not opening her eyes which is what she does when she is sedated. I got her up and gave her some spa treatment and washed her hair n gave her a head massage and the water woke her right up. I did her hair all pretty and she was doing well again. Then the Docs decided that we could increase her feeding rate so that she would get the same amount but I could unhook her for 4 hours in the day to hold her and stuff. I decided to break it up and started with an hour after her washing. Then around dinner time I unhooked her again for an hour and a half and when she got her blood checked it dropped from 86 down to 55. We are checking her blood sugar to make sure it doesnt EVER go below 55 and now it is sitting right at 55. If it drops below then I have to give her one ounce of orange juice in her tube and then check again in 30min. If it drops down to like 30 she would probably be unconcious and If I was at home would have to call 911. So we put her back on her food and in an hour rechecked and it was back up to aound 80. In conclusion basically for some reason taking her off the food was too much ffor her system which sucks because she may have to always be connected to her food with no freedom from it. I have to wait ot talk to Docs this morning to see whats gona happen. Meanwhile we are on our third food pump in 2 days of non stop alarming because the new formula mixture keto cal keeps clogging her tube. The dietician said this is not normal so they either mixed it wrong or its the bags or the pump. Its alarming again right now and its making me crazy. Hopefully they get it fixed today before I throw the pump out the window. Her ketones also werent as high as they were the day before so that was confusing. Today we were visited by PANDA the expertise in blood draw people came in at 5:30 am to take some blood from miss Baybeblue. Ovcourse she was finally sleeping after having like 5 seizures in an hour. luckily (haha) i had been up since 4am when the nurse was in doing her stuff. Baybe lost her IV yesterday too so If she has to get a new one it is going to be very hard. Almost all her available veins are blown. The only ones left are in her feet and that is the most painful spot for her. They go tblood on the second try on the side of her hand. It sucks because they always have to dig around in there after they put the needle in because they always miss the vein. I know its not there fault but its very hard to watch. I have been doing research on the vagus nerve the last few days because this one neuro told me there is a study on how the vagus nerve goes down into your belly so they are stopping seizures by pushing on the stomach or drawing the legs up to the stomach and putting a little pressure in is stopping seizures in some people. I cant push on her belly too much because of the G tube but I have been pushing in her belly button and rubbing her neck and throat during the seizures so wele see what happens, nothing so far. Today I have to have someone go get my blood testing equipment from medical supply so that I can be trained to use it before I leave the hospital. Then I have to have someone go and buy me a gram scale with a power cord so that I can learn how to weigh all of her food and mix it right. They said that it has to be so exact that measuring scoops arent accurate enough. Im hoping my Dad can hook me up since hes bringing the new carseat for Baybe that just arrived. It was normally 800 bucks but we got it for 500 and it is the kind of carseat we had to buy to be legal for Baybe. It is designed for disabled children, goes up to 105 lbs and exceeds all safety standards. Yahh Im excited to see it, I think its gona be hoooge. So now Im dealing with the fact that Baybes oxygen should be at 100% and it is chilin closer to 90 which means for some reason she is not getting full oxygen. Im thinking thats shes playing that super sedated game again. I found out that my favorite Doc is probably gona disapear for a while and that sucks. His name is Jason and he has seen Bayeb almost everyday she has been at Ohsu two months ago til now. I guess he just started in the area right before we got here but now hes moving onto another section I think in the stroke dept. He is a resident neuro so he will someday have his own neuro clinic and maybe Baybe could one of his first patients. I like him not only because he is the most consistant piece to Baybes care that she has ever had but mostly because whether or not he relaly does, he makes me feel like he cares about her. He listens to every word I say and never makes me feel dumb for asking a million weird questions. (so what I think people should eat there placentas, Am I really the only one that thinks that?) Thats a subject for later. I am realy happy with the team of people here at OHSU. They are all very smart and very caring people. I have now officially had every single pediatric neuro in the hospital working with us at one point in the last two months. Each neuro I meet, I like for there own reasons and all of them together Is really cool. Now Dr ROberts is back from wherever he has been and is seeing her again. He actually is her mane neuro now I guess but he hasnt been here for a while. Thats why Im so thank ful that I had Jason to be that one consistant peice to the puzzle.

So doc just came and said that I cant take her off for more than thirty min and then check her sugar and if it lowers again than she cant come off at all. And we are getting a new batch of formula to try and fix the damb clogging. Oh yeah and did I mention that I have to get to work on my school work now? Im still going to school online from the hospital. Im taking 12 credits consisting of Speech, Supervising, child health safety and nutrition, and 2 MSD classes. I am doing ok so far this term I just cant believe its almost midterms next week. Its the project parts of the classes that Im having the hardest time with because they require the most long spans of brain power and train of thought. Then theres my other two babies Layla, and Taylor. Layla is 11 an Taylor is 9 and they are both having a very hard time. They cry to me everyday wanting to be with me and wanting to be at home. They have beem bouncing around form my parents to my sister and up here at hospital with me on weekends so they are running ragid. They both beg me to have alone time with me and theres nothing I can do about it right now. Its very hard on my heart. They act out by over emphasising injuries and fightingwith eachother to get attention. I hope and pray that I get ot go home this week so we can be together.

Today Baybeblue went into full ketosis and began the formula for the ketogenic diet. We are working to keep the ketones flowing and her glucose down to 50-75 instead of the normal 120. She has tolerated the food well but did vomit one time at the end of a big seizure but the docs arent too worried. It is normal to have some other small issues while the body adjusts to the new diet. I feel like even though she has had a lot of seizures today she seems to be in a great mood. They came and took pics of her today and I will add a few of them. two are from before when she still had the nose tube but the hospital just put them on a disc for me. A volunteer photographer comes around and takes pics of the sick kids and gives us copies it is very sweet. We are now just waiting to make sure her body is going to tolerate the diet and teach me a whole buch of stuff about weighing and measuring and calculating her new food, finger pokes, and urine testing at home will be required. We have to get all her meds switched to non carb and non sugar forms becaue she is not allowed to have even a drop of either still waiting on that. If everything goes really well I might be home before the weekend. Wish us luck. The pic of the pee stick is showing the maroon on the third color up meaning she is throwing full ketones!!! yahh

Waiting for Ketones

Baybeblue is having a good day today suprisingly even though they hav been starving her since last night at midnight. We have to get her body into a state where it starts producing ketones. Ones that happens then we can start the diet formula. So far she has been in a great mood and is not on any pain meds, not even tylenol. So I get to put a cotton ball in her diaper and when she pees I squeeze it on a stick that changes color. Im tryin to get the tan color to turn to maroon and that means she is throwing ketones. As of 5pm it was a little pink, its the third color up starting with the blue in the picture and again we are trying to get it to maroon. When the body gets to the state of starving and is producing ketones to survive then the diet will start and mimic the starving state keeping ketones flowing. For whatever reasons this stops seizures and is called the ketogenic diet. Wish us luck and say a prayer , this is one of our last options for helping her.

Baybeblue's Surgery for G tube

I woke up on the day of surgery and was told right away that the surgery would be scheduled for one oclock today so they would be up before 2. I text messaged my family and friends to let them know and finished waking up. All the sudden the nurse walks in and says there is an opening in surgery so there gona come get her now. I started freaking out. I held her and loved her and put holy water all over her and prayed as hard as I have ever prayed before. They came and got us and I carried her down to surgery walking beside her bed. We got there and they told me that I signed consent for open surgery no the laproscopic like I had thought. They told me that the surgeon wanted to talk to me. I got to meet him and I cant say he made me feel that much better but he said he thought the safest way to do it was to open her up for the surgery and then put the tube in so there would be two big holes that have to heal instead of one big hole and two small ones. I was stressed about it but had no choice but to listen to him and go along with what he felt was best. They let me hold her while they gave her calming meds so she wouldnt remember leaving my arms and as she went limp I had to hand her over to complete strangers that were going to cut into her beautiful little belly. I took a picture of it right before because now she will always have scars. I lost it when they took her, the feeling was overwhelming. I couldnt catch my breath and I cried so hard I couldnt keep it quite. I ended up getting sick into a bucket that was full of syringes, oops. I walked around and smoked a cigarette and the thoughts wouldnt stop racing through my mind then thank God my Daddy showed up. We got food and then they announced over the speaker that a car left there head lights on. After listening to the description he realized it was his and had to walk forever to go turn them off. That was hillarious to me, I needed that. We walked back to the waiting area and she was out of surgery, 5 min then we got to go back to be with her. She looked drugged but good and her surgery was bandaged so I couldnt see anything. They said she did great and although there was blood coming out her tube she would be fine. We had to leave the nose tube in for a day to drain the blood that is in her tummy from the surgery. Pics are of before and after surgery.