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.