Back Home

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

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

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

My worst Fear

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

New Orthodics

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

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

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

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

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

I am so TIred!!

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

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

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

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

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