Getin Ready for CALI Baybe

So Stanford finally called and said that our appt is set for February 9th, 2010. I am so nervous, there are so many details. I have started off with a phone call to the case worker through the DHS and with no responce today left a message with a supervisor. They are the ones that are going to hopefully help me pay for the trip down there or else it wont be happening. I so wish that money wasnt always an issue when it comes to certain aspects of her care. Its not like you can tell her to appreciate the simple things. There are children out there that actually have a better chance at life and are getting more advanced care because they can afford it and i cannot. As of now and the last few days Baybeblue has been doing really well. She has been fairly alert and only having a few seizures a day that resolve on there own. I thought I was going to have to do diastat the other night because she had like 5 in a row but then she stopped and went to bed. Last night she had some crying in the middle of the night that Im assuming was seizure activity as well but also resolved itself. She is still taking her antibiotic so currently she is on clanazapham, depakote, topamax, levocarnatine, ranitidine, fish oil, and vitamins with flouride. Im so flipin sick of washing syringes. Anyway she is very alert and active when she is awake and has been demanding alot of attention. She whines when I leave the room and gets bored when I stop playing with a toy or focusing on her for a minute. She has been loving everything she got for her bday, thank you to everyone!! So No, I havent decided how I will get to California yet. I have had a huge fear of flying for 12 years now and havent set foot on one and also Im very concerned about her medical condition and her need for oxygen and how she would react to the altitude and stuff, it could be bad if we got up there and something went wrong. I thought about driving with a friend but my car is falling apart right now. I have had to get a jump start like 7 times in the last few weeks. Its like my battery died once really bad at the hospital and now it just keeps dying and ever since that happened now the side electric door doesnt work right. Also my brakes are about ready to go out. They are squeeling really bad when ever I use them and my front two tires are black from brake dust. I would have to get these things fixed on the van before I would drive it anywhere. I wish I could just get a rental car or something. Something nice so Id feel really safe and Baybe would be riding comfy. I dont have very long to get it all figured out and I have to get soooo much stuff ready for her with all her machines now its gone b crazy to try n pack everything she needs. I keep battling myself in my head as to whether or not Im doing the right thing dragging her all the way down there, but I have to remind myself that her main neuro said if it were his child he would have taken her to several hospitals by now. Stanford will look over everything including all of her tests she has had done and studying the EEG is gona be a huge deal. There are seizures that she is having that make her cry that the docs here are not able to see on the EEG and that has caused some issues between I and them. I trust myself more than I trust the machine and I hope that the neuros down there have some good insight into what is going on. They will also be able to stay involved with her care after this appt. Onece they have seen her then they will remain a resource for us even if it is only over the phone or computer. She will be seeing Dr Olson at Stanford University, the same Doc that she saw before. They actually said that they remembered her( thanx to me for naming her so unique) it really has been a blessing having people never forget her.

So on Sat night I planned a night out for myself that I desperatly needed. I had both babies Daddys here to watch the kids and I had some of my best girlfriends meet me and we went out. Although I really did enjoy the time away, I had the horrible tragidy of having my camera stolen. I had just got done taking a bunch of pics of me and my friends when I left it sitting by a group of guys. When I went back for it the camera was gone and so were the guys. Im a so stressed out aout it, there were over 200 pics and videos of the kids on there that can never be replaced. Im so angry I really hope the people who did it feel terrible when they see a ton of videos on there of Baybe having seizures. What a bunch of jerks. Ill just add that and my car to the list of things I have to figure out how to pay for. Like the toaster we had to throw away because Taylor put cream cheese on a bagel before he toasted it and the microwave we had to throw out because I spilled a whole bowl of water in it so it shorted out and didnt work anymore. Then theres Taylor Bday and that falls spack dab on Feb 7th right when I will be freaking out about leaving for Cali. This all should be a test of my mental strength. Im hoping that Taylor doesnt add anymore stress by inviting people over without telling me again and that everyone stays supportive and helpful in this rough time.

Oh yeah and Im still in school doing just fine staying on top of things. Now if the house would just magically stay clean I would be ok but OMG how can it b this messy everyday. Each day I try to come up with more rules or better ways of doing things so it doesnt get so bad but it never works. the kids just hide things and cover things up and make it worse. cant complain too much right now, we got it clean clean clean today and I got corned beef and cabage almost done cooking and it smells soooo good. Baybe is being stubborn though and her oxygen is staying right below 90 today so her machine is beeping over and over and driving everyone crazy. Thats not enough to turn her oxygen back on but she wont stay awake wich is what brings her back up. I added a few cute pics one of the crazy snow we had, that was nuts.

Hope you are all having some good family time while its icky and crappy outside. Hope you are all healthy and Happy!!

One more pneumonia

So Christmas is over and we are totally about the new year and a fresh start. We decided to use one of our Xmas gifts, a gift cert. to Olive Garden to enjoy some family time and have our own little New Years dinner. Layla, Taylor,Baybeblue, and I had a wonderful dinner and took some really funny pics. Then we went to the mall so the kids could spend there gift cert, they got for places in the mall. I was actually suprised that it wasnt that busy there and we had a nice time shoppin around. Then we went home and all struggled to stay awake till midnite then passed out!! We started out the New Year with Baybeblue still on a rocky course. She was having about 3-5 seiures a day which isnt that many but they were bigger than normal and sometimes I thought they werent gona stop. I was on the phone with Nuerology almsot everyday trying to figure out what we could do to get these seizures to chill out. They were making her upset enough to where she was crying for alot of the day after and before she had them. They told me they wanted me to try giving her a bolus dose of her depakote and extra 7 ml in the middle of the day and then reduce her topamax back to what it used to be at 1 1/2 pills instead of 2 wholle pills. by the next day her seizures were already better and she was way more alert. Then she all the sudden start sounding congested, then she starts coughing then comes the FEVER. Her oxygen level would not stay above 90% so her pulse ox was alarming continuously. I watched her closely and after 24 hours of that I had to put her back on her oxygen. she was on a liter of o2 and was still having fevers ranging from 102-104. I decided to call neuro again and Kristy told me that she needed to be seen if she was congested and was requiring oxygen again to make sure that she did not need antibiotics. She transefered me over to the pediatrics dept. and they said that I needed to take her right to the ER so off I got the kids off to school and we headed up to OHSU. After about an hour in the ER they told me that we would for sure be staying because she has a bad pneumonia so they were getting a room ready for us. 9 north rm 48 this time. We were really hoping that they would do they couple days of IV antibiotics and then they would let us go before her bday. Didnt quite workout that way even though she was getting better, not worse, she was still requiring oxygen and was still really congested sounding. So we had her bday in the hospital. We had lotsa visitors: My dad, Her noni, Auntie lissa, Aunt Donna, Aunt Cynthia, Auntie Hush, CHild life in the hospital got her a cake and made her a sign for the door and she got a bunch of presents and baloons. then her grandma and granpa showed up with her Daddy and her brother Tay. Overall it was a pretty good day considering we were in the hospital.

Over this time period I started out with a migrain headache on the day we were admitted which quickly turned into full blown nausia and vomiting and migrain. I was seen in the ER and they gave me nausia meds and pain meds and sent me on my way back up to her. The next day I was way worse and still throwing up, by the night time I was in so much pain I had to go back to ER. This time they did a cat scan and found a huge Cyst. They did a ultrasound to confirm and then gave me more meds and sent me on my way again. Now Im going on four day and still having extreme stomach pain. Its not a familiar pain,I dont think i have ever felt like this before.

We get to go home today so we are very excited. We got word from neuro right before we got here about Cali and they said that the referal had been sent so now it was up to them to call me. Im starting to think of how hard its going to be to travel with her. especially if she is still requiring oxygen. Cant wait to get home to my kids and my puppies and my bed. I am exhausted from trying to sleep in this place.