Holy Appendix!!

Sunday we enjoyed a beautiful day at the park for a family reunion. All the family was from my step mothers side and were people we had never met or hadnt seen in a long time and was so fun. The kids reunited with old cousins and Baybeblue got to meet the whole family and everyone loved her. Monday morning at 5 am I woke up with a bad stomach ache. It hurt all over my belly so I thought I had goten sick from something I ate at the picnic. Over the course of the morning the pain seemed to get worse and didnt feel like it was gona go away so I thoughtI better get it checked out to make sure it wasnt the flu or something Baybe could get. I went to the emergency room because I dont really have a primary doc right now because of the insurance change to an open card. The docs asked a bunch of questions and honestly I thought it was gona be a gas bubble or something silly. They pushed on my stomach and I screamed out a death scream and lost my breath for a min and was instantly soaked with sweat. They took me for a cat scan and then I waited. A nurse came in and said so appendicitis huh? I was like what? he said oh they didnt tell you yet? I started crying and asked what that meant and he said I would have to go to emergency surgery and have my appendix removed. I was hyseterical and only had a few min to call as many people as I could and start writing down all Baybes directions for meds and stuff. No one answered there phones so i was freaking out and leaving messages. Finally I got a hold of my step mom kathy and she told me she would find my dad and be there right away. I dont remember much after that but I know everyone was there and my sister lissa took Baybe to my house for my first night away from her ever. Baybe seemed to do fine although you could tell she was confused and missed me. I woke up in so much pain the second day. I felt like they did something wrong to me. It looked so bad and still hurt really bad where my appendix was. The surgeoun got all defensive and acted like I was putting him down but really I was so out of it and in so much pain I couldnt even think strait. I left the hospital that day but woke up in so much pain the third day that I went up to ohsu for a second opinion. They said I may have popped a stitch inside coughing so I am now on a long painfull road to recovery. I cannot pick up or hold Baybe at all which is so hard on both of us. I am relying on the other two kids to help me with everything because I cannot move. I am having a hard time figuring out how to go get groceries and make dinners let alone clean the house. Im not quite sure how this fits into the everything happens for a reason category but wele ge through this too I guess. Im really bummed because Im suposed to be planning lalas bday party and then mine is the 14th but I cant do anything. Pretty much the whole rest of my summer is shot. Im on the best pain medicine there is and it still feels like im being stabbed everytime I move. Il put some pics up when I am feeling a little better, I have three nasty wounds!! I hope you are all having a better summer than us, love and peace.

Lovin Summer

Things have been going really well for the last few weeks. The most important thing going on right now is that Baybeblue is comin off her klonopin/clonazapam very well. She started out at 1/2 a pill in the morning and 1/2 a pill at night, then I dropped it to a 1/4 in the morning and 1/2 at night for a few weeks, then I did 1/4 in the a.m. and 1/4 in the p.m. and now we are down to "0" in the morning and 1/4 at night. She is very alert and is constantly moving and trying to get up. She has become very attached to her binky and now demands to have it all the time or else she is looking for it. She hasnt increased in her seizures at all but I have noticed some possible seizure activity involving her eyes. Its hard to tell because coming off the med is making her see clearer so she is always doing strange things with her eyes. I was suposed to have goten the new depakote by now with no sugar in it so we could get her levels more in range but when I went to go get all the meds there was a mistake on the new depakote and there was two sets of directions and two doses so they had to contact the doctor and I am still waiting three days later. Luckily I found a back up bottle of the liquid depakote so I am using that til they get it together. Also I have been dealing wih some bull having to do with her wheelchair/stroller that she is getting. I appreciate it so much that we are able to get this for her but when it was taking longer than it was suposed to I called the company and they said that the doctors never sent this paper called the medical necessity form so the process was just on hold. I went to ohsu that day and talked to dave olson and told him the paper wasnt there and that was the only thing keeping her from having it. He said that he would fix it so I waited. A few days later I contacted the company again and they said they hadnt heard anthing and told me that this usually doesnt happen and someone was dropping the ball in this situation. I called her primary doc and left several messages and finally a week later got a call back from her directly. She said she was sorry about the miscommunication and she would contact the company directly and fax them the paper and call me back. She never called me back so at 4pm I called the company again and they said they never heard from the doc. AHHHHHHHHHH. So Im not sure what the hell, but after they get that paper it will only take two weeks so Please let them get there stuff in order and help me out before I break my back. I also called the main manager of the tanning salon partially to tell them that I wouldnt be able to tan this month because of my financial situation and to ask about the progress of the fundraiser they were planning on doing for Baybe. The women had no idea who i was and said that they denied my request to not have to pay for the two months I was hospitalized with Baybe and didnt tan one time. She said that she would have someone call me but she never did so I dont know if they are still doing it for her. Makes me wonder alot about what he story really is. I took the plunge and went to my school to re-enroll in school. It is going to be so hard and take so much away from Baybe and the other two kids but I have no choice. EVerything has fallen apart in the last month and I have not had one day that I have not felt over whelmed and am constantly thinking about how I can come up with some money so I dont get any further behind. I am going to work with a career counceler but couldnt get an appt until aug 11. They will hopefully figure out what my options are for a career now and what classes I need to take to get there. Im very nervous and especially because they said that because I am enrolling late that I wont get any money for my books n tuition so I will have to come up with that money myself and then they would pay me back. So I am going to have to go to school for a while before I will be able ot get caught up on my bills. I cant even think about how hard it will be to stress about my bills and my school work on top of the kids. Makes me wish that august didnt even exist because it is going to be hard and that is suposed to be the best month in the year because it is my birthday on the 14th and it is lalas bday on the 7th. I want for my birthday this year to just have one day with no worries. I am very excited because I get to go to my favorite resteraunt for my birthday and I get to intoduce my family to the place. It is morracan food with belly dancers. The other two children are doing well. Taylor is spending a few days with his dad and Im missin him very much. He has mad some good friends in the neighborhood and spends most his days of summer outside playing with them. Layla is busy planning her birthday party which this year will be a dance party. I told her she could invite as many people as she wants. I will empty the garage and decorate and get some snacks and music. She has begged me for months for her gift she wanted from me a guinea pig. We went around to all the petstores and suprisingly enough there isnt that much selection and the one she fell in love with got sold and they didnt think anymore were coming so we found one that was the right price and realy super cute for what its worth so she got it early. Not sure what his name is yet but he is really pretty all black with long silky hair. I always thought they were mean but he is so sweet and makes cute noises. I wish I would have had one of these when I was little instead of the rats. The coolest part is they eat veggies not anything gross. I hope everyone is enjoying the sunshine it is going to be super hot outside this week and Im excited to play outside with the kids and get a free tan haha.

G-tube blood

Had a little scare yesterday when we woke up there was blood all around Baybeblues G-tube hole. I cleaned it and wasnt too freaking out until she threw up. I was more worried at this point but still was just watching her closely. She was also making alot of noise trying to talk which she usually only makes noise when she is in pain or upset about something. Then she threw up again which is totally out of the ordinary and dangerous considering that she asperates anything that is in her mouth. I called the docs and they wanted to see her so up to ohsu we went. They checked her out and said she looked fine and to watch for blood in the vomit or trouble breathing or fever and bring her back if it starts bleeding again around the tube hole. Shes doing fine today and there is no more blood. I actually think that the more vocalization might be connected to me lowering her dose of klonopin(clonazapam). She is now taking only a quarter of a pill in the morning and a quarter at night. She is super active which might be why the tube hole got irritated and bleed. She is trying to talk and making all kinds of crazy noises its so cute. Hopefully next video will be of her doing this and trying to talk. In the next few days I will pick up another new med change. I finally got the valporic acid to be switched to a sprinkle form that doesnt include any sugar so she will finally be completely sugar free and can be fully ketonic. Over last few days her seizures have been really small. The days before yesterday she didnt have one all day and we were all talking about how great it would be if that was the first day she didnt have one and then she had just a tiny one while she was passing out but it was so weak you could barely tell. Today she has had one and it was medium and other than that she doing good.

The other two kids on the other hand are giving me pains where I dont even know you could get pains. They are fighting constantly and have no interest in trying to improve. I hve now run out of things to take away from them trying to get them to be good and still nothing. Yesterday when I had to take Baybe to the hospital they were at eachothers throats the whole time and when I finally told them they were grounded for the rest of the day they both started balling out of control just in time for the doctors to walk in and witness. Its so hard because I want them to have an amazing summer but they keep getting in trouble and I have to ground them. Taylor decided to jump up and run across the hood of my van and dented it. I am trying to teach him about respect and hes just in his own world. Lala is just caught between being a kid and trying to grow up so she bounces back n fourth between acting like a little kid to acting like a mom i 2.2 when she should be acting like a young lady. Im just gona focus on pullin gthis family together as tight as I can and hopefully they get out all there crazyness before the new school year.

Hope everyone is having a great summer, Peace & Love.

YAY today was a good day!!!

Today was Baybeblue's first follow up appt with her favorite Doctor neuro Dr Coryell. He said and I quote, "Baybeblue is doing quite well. I am happy to see her improved developement." So he decided that we could slowly try to take her off the klonopin and see what happens. She was alert and active for her appt, even rolled over and smacked her head on the wall. Overall things went so well she doesnt have to be seen again for 3 months unless something happens. her 2 seizures a day have now turned into 5 or 6 way smaller ones so I dont know if this is a good thing or a bad thing because they are much weaker yet more frequent. We talked about getting her depakote turned into pills so that we can get the last bit of sugar out of her diet for full hetone levels. That on top of changing her formula to stronger levels should hopefully get rid of the last few seizures. I am so happy she is so happy and doing so well. I met a family at the hospital with 2 beautiful children and hopefully made them feel a little better. ther youngest was about 2 and had to be hospitalized with a feeding tube up his nose because he was not gaining weight and they have no idea why. They were scared and had alot of questions. The saddest part was that on top of everything they were concerned for how they were going to pay for it. I guess ther isurance does not cover the hospitalization and it made me sad. I couldnt imagine dealing with the pain I went through and be trying to figure out how Im going to pay for it. Thank god for the Oregon Health Plan. Its pretty sad that I am in a better position than them because I am single and broke. I gave them my blog info and the youtube video info so they could se eme putting the tube in myself because they were nervous about it. They were a beautiful family and I am praying that everything turns out ok for them and that they stay strong for eachother.

G-TUBE ADVISE-I have been thinking alot lately about the g-tube that is in Baybeblues belly. We are suposed to get it changed soon to the mickey button that we originally picked out. We just had to have this one for now because thats the one they put in during the surgery. The thing is that the resons that I didnt want this tube are different now. I like the mickey because the feeding tube locks in and cant be pulled out. Now that I am experiencing it I realize that if it cant pull out of the button than if it gets yanked on then it will pull on her belly and that would hurt her very bad. I like that it pulls out if it gets stepped on or something I would rather have a little spilled milk then her whole inside stomach contents. I liked the other one also because It can be changed at home without going to the hospital. Now I realize that this one wont fall out so I dont have to worry about having ot put it back in and it doesnt have to be changed as often so its not a worry. I also am thinking about the biggest issue that I have found that it hurt her when she lays on her belly because it sticks out a little but the mickey sticks out atleast twice as far so she would never want to be on her belly ever. Basically what I am saying is that I think I was wrong about that button and I think the one she has now is better. It is called a bard button.

Just because several people have asked me I thought I would let yall know that I never got my little break I was talking about. It wasnt that I didnt want to do it but it just didnt work out. I am hoping that it will happen soon maybe for my Bday that is coming up in August. I also had a thought today about applying for a grant to open a gym for people with disabilities. There could be all kinds of equipment and a therapy pool which there is not one in the area. It has to be a cirtain temp to be able to be theraputic. That would be so wondereful I could just work there and spend everyday there playing with Baybe. I have also decided that Im almost positive I will have to go back to school next term because everything else in my life besides Baybeblue is starting to unravel. My internet/cable/and phone line got shut off because I just couldnt pay the bill anymore on top of the other bills. I am now using my wifi to pick up the neighbors internet and have a terrible signal so its very slow and not always there but im makin it work. I dont mind the cable being off but the phone line made me feel safer because if something happens to Baybe than I can just call 911 and continue helping her and they find me but on a cell then it is a much longer process. I should have known that it would not workout but It just takes so much time away from Baybeblue. I wish there was another way because Im sure there are so many women in the world that are in the same situation. I just dont feel ok leaving her with anyone so Im screwed.

Disabilities Advice- I found out that I just need to go to the state parks office near loyd center and fill out the paper for free camping pass and have a doctors note stating her disability and thats it I get a free camping pass for life to all state parks. how great is that? It also allows us to get a cabin or yurt with wheelchair access and electricity for Baybes machines!! Im gona start planning our trip right away I am very excited because I didnt think we would be able to do anything like this for the summer because of the electricity problem for her. This is perfect.

(ABOVE) I added a few picks of dinner at my dads when Baybe was interacting with her amazing cousin Elishuba. They were so cute together. Elishuba got a little frustrated that Baybe didnt interact with her as much as she would like but it is going to be amazing to watch ELishuba grow being comfortable around a disabled person which is something most of us do not know. I cant wait to see how she adapts herself to play with her cousin Baybeblue.

Baybeblue update

I havent blogged for a few but it is for good reason and that we have been busy havin fun together. Baybeblue is doing great with no problems what so ever. She is still having two seizures day but they are really mild somedays. I added a new video of how her seizures are right now. I have a tip on caring for the G-tube. Baybeblue was growing some extra skin around her hole and it was becoming irritated and causing it to bleed a little. Some people said it doesnt hurt at all but some said it can be painful but everyone saud that it would have to be removed in the clinic with some stuff that kills the skin and it would dry up and fall off. Again some people daid it doesnt hurt getting it removed and others said it hurts very bad so I was worried. Then we saw another doc and he predcribed me the cream trimcinoloe acetonide and told me to put it right on the skin myself. The skin just slowly went away and disapeared with no discomfort in like two days. Now everytime I see a little growing back I just add a little cream and its gone, I highly recomend this approach. We have been enjoying the sun very much and have adapted to Baybe. I am using her bath chair outside in a kiddie pool to let her play in the water and she loves it so much. We have hit the public pools too and even though I haven had the nerve to put her all the way in the water, she loves putting her feet in and handles the sun and heat very well. We have been working on some new hand signals so now she is waving "hi" and "bye" she is blowing kisses, saying more and all done and most recently learning peek a boo and clapping for fun all in hand signs. She is crazy active and it is really hard to keep her from getting all wrapped up in her cords. I talked with her ketogenic dietician and asked if maybe we could make her a little more ketogenic to try and knock out the last few seizures a day. She said it is possible so in the next few days I will be switching her formula recipe to put her deeper into ketosis. Im really wanting to have some great things to tell by the time we go to her next neuro appt so they will take her off some of the meds.

Just like I thought I am very stressed out about my financial situation since I am not going to school. I actually think that I am going to have to figure out a way to go back as soon as possible so that I dont get too far behind in my bills. Im going through this whole transition phase in my life right now I guess. Not only because of my situation with Baybe or the fact that I am getting old but Im realizing that all of the people who were apart of my life, are just not really there anymore. I dont think that any of them mean to be gone, its just kind of like whoah I woke up one morning and realized that all of my friends are in relationships or super involved in other things going on in there lives and no one just has time to hangout. I dont know anyone who is a single mom like me. I dont even know anyone with kids to hangout with its crazy I have always had tons of friends. Its hard when your in my situation because you dont want to try to hard and force yourself to be around people you dont really like but then if you ont try then you will just sit in your house and never meet anyone. Really at the age of 30 where else is there to meet new friends besides a bar? I dont want to go to bars and Baybe cant get in anyway so what are my options? I am happy for all the people in my life for finding the next step in there lives but I am just left wondering what mine will be. FInding love is hard enough in this world without all the stipulations that I have in my life, is it even a possibility? I watched that movie, hes just not that into you, and I cant believe what a good job they did showing how confusing and unpredictable yet predictable love can be.