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.