Time for BAYBEBLUE'S BIRTHDAY BASH 2012

We all made it through Xmas without any new illness's until right at the end. Literally Xmas night I got a pain in my throat and my the end of the night I was full blown sick! Down for 3 days feeling pain from head to toe. Baybe has some symptoms but not all mine and same with Kevin. But it was a succesfull Xmas and everything they wanted and more. Santa brought Baybeblue a giant inflatable pool full of balls and soft toys so she can go crazy in there and not hurt herself. I think her favorite gift came from her Grandad, a full size completely soft Strawberry shortcake stuffed Dolly :)) she loves it and it will be by her side forever(try googling where to find this, it was nearly impossible and this is the only one made in the world, not the only doll, the only doll like this) Anyway everyone got what they wanted and now its time Gear up for BAYBEBLUE'S BDAY BASH 2012!!! Im so excited we got the flyer done!!! We will have to get to chuck e cheese(on powell n 92nd) around 2 to set up for the party and it goes from 3-9pm with different people showing up at different times. Chuck e Cheese will donate 15% of all proceeds for anyone who says we are with Baybeblue. We have Icing Smiles making her Strawberry shortcake cake and a cake for her to smash up. Diana also said that shes gona see if her baker friends will help her and make some extra treats. Then we have the amazing Sam Lensen who is an airbrush and tattoo and just all around amazing artist will be there doing face painting. We are having t-shirts made that say I <3 Baybeblue again but better and now I am working on making a video promo for the party and a slideshow of pics of her for at the party. I got the music, the pics, and the words now I just have to figure out how to make it all go together. I am nervous that we wont have a good showing cause last year the weather was so bad on that date. I just want to be able to send UCP a huge fat check and pay them back for everything they have done for so many kids and families. Susan Cushman from UCP will be our representative at the event and is even bringing her daughter that has CP too. Now Im also trying ot get any companies that will be willing to donate a small portion of proceeds on the day January 11 even if only a few hours if we get enough people it will all add up. Im so proud of my Baybe girl this year we have been so blessed with good health while watching an hearing about others suffering. My Nana had been diagnosed with cancer in her lung moved to Berkley to live with my Aunt and receive chemo treatments. Unfortunately they didnt work like they would have liked and now the cancer has spread. My aunt sends these cute little videos of her and she still has a smile on her face but Im not going to lie I am scared for her to go. Im scared for my Dad's heart and the pain that we are all going to feel, it overwhelms me to even think about. Then my Noni got sick and they had to call 911 and have fireman break her door down to get to her. SHe ended up having an infection in her blood and it hit me hard. I love her very much and she is so sweet i cant imagine her having to go through pain.

Other news Lala got all her grades up and is going to continue working close with the theatre dept and will be auditioning for a local play in January. Taylor is stoked he got so much new stuff for xmas and hes been working so hard at trying to help out and get stuff done so he can have his free time to enjoy all his new stuff.

Enough for now but I hope that anyone that is in the area will come to Baybes Bday party and help to pay back a great cause. Love n Peace <3

Gearin up for Xmas, planning Baybes Bday Bash and, hiding from any sick people.

SO we all made it through Thanksgiving ok. Layla was still on antibiotics and pain meds that made her act super angry and ridiculous. She was so mad there wasnt pumpkin pie and she was very obvious about it which is unlike her. I have to admit I found it a little hillarious and everyone knew she wasnt herself so it was acceptable. Baybe did great and looked beautiful. We got lots of family portraits done by Kevin for Xmas gifts. All except our own family Pic. We seem to have the hardest time just finding the time and making it happen. Now the xmas struggle... saving and planning making sure the kids get everything they want for xmas. I already got my boyfriend his gift so no worries there and I know what I want,, just to be all together happy and healthy so all I really care about is the kids and my family which just happen to be the most difficult people to buy for. My Dad especially. Hes a cowboys fan but Iv given him every darn cowboys thing I can think of including a peice of there stadium from when it was torn down. Hes a bbq guy but has everything for it and anything else he could want he would have already bought because he can! My Mom Kathy is easier she likes specific smell good stuff and enjoys anything pampering like. Now my sister Emily she is everything natural, totally religious, super smart and about to become a full psychologist and have her own practice so.... its all so hard because I want to get people stuff they want and need but my budget not so great. We Did get the tree and its up just havent finished decorating yet and we are rollin in the xmas decorations.
NOW its almost time for Baybeblues bday bash and not only do we get to have it at CHUCKIE CHEESE and get part of the proceeds of the night but UCP will be recieving our donation in Baybeblues name and will be attending the party as well. I applied to this amazing company that makes cakes for special needs kids and they accepted us so we will have an awsome cake for Baybeblue and hopefully alot of other things I have in the works will come through for us. I want to make this the best bday she ever had since its the first one she will be aware is going on now that shes off the meds. Last year she didnt wake up the entire party but this year shes gona have so much fun!! Im excited and I hope to see so many new faces at the party. Remember mark your calenders anytime between 3-9pm on 1/11/12 at chuckie cheese on powell make sure you tell the cashier that you are there for baybeblue and UCP will get part of the procedes. Please contact me by email if you have any interested in donating anything to her party. we are looking for a face painter and someone to hire or dress like strawberry shortcake at the party any other ideas welcome we will even except things to rafffle off to earn extra money for swimming pool therapy equipment for Baybeblue. Thank you and love you all.

I will be thankful to have Thanksgiving!!

I hate these new seizures Baybeblue is having. I am thankful that they are short and dont effect her in any other way I can tell but that they make her cry this horrible fearful sad cry. It breaks your heart to hear. Shes fine right after them and goes right back to what she was doing. So for now I have been able to focus my attention on the other problems arising around me. Taylor first started with the stomach problems and his ticks have become more noticable now that hes finally to the age where the kids around him dont all look there having ticks. Meaning in elementary school all the kids were nuts they couldnt sit still and they were all picking there nose or playing with something they shouldnt, now all the kids are calming down and there noticing Taylor's tics. He has tourets and his teacher didnt know and wrote him referals for tapping his pencil and tapping his toe. Of course they were discarded when the dean saw them but I used it as a oppurtunity to raise awareness about disabilities such as tourets and epilepsy. Any how I had to get them to give Taylor unlimited bathroom use because of bathroom issues which doctors accredited to the stress that is being caused at school. So that will be the next thing on my list to deal with. Now Layla walks in my room and she is white as a ghost and her lips are gray, hair standing strait up and says I cant stop puking and my right side hurts really bad..... So because it was a Sunday off to the ER we went. I specifically asked them to do an ultrasound to rule out appendix or kidney stone and just like most doctors he did not like me making suggestions so he refused to check and just tested her urine and sent off her blood for further tests. They came back and said she had a bad kidney infection and UTI so they kept her for the day and gave her IV antibiotics and released us with meds to get better at home. Meanwhile they said she should be feeling better but her pain is getting worse so I have been calling doctors all day trying to find out if I should take her back in. Im so mad they didnt just do the ultrasound while we were there. Now I either have to drag her and Baybe outside in this horrible storm to back to hospital today or wait and maybe have to spend thanksgiving in there :(((( That would devastate me because of the family issues right now I probably wont be seeing them next Thanksgiving. Right now Im waiting for my second opinion Doc to call back. The first one said to wait until tonite and if shes still in pain then bring her in.... I dont want to stay in the ER all night. We were planning on having people over here the day after Thanksgiving and now theres now way Ill have time to prepare. I am thankful we are all together and that makes me happy but they all 3 really need me right now and I kinda think I might need a little extra help too. I love being in love but it isnt always perfect and it sucks when its not perfect when you really need it to be.

Good news is Baybe got a new walker and I think she likes it. Taylor started basketball and I think he will do well this year, I went to highschool with his coach. Layla has been bustin butt at school and we havent had any drama since she decided having a boyfriend was no longer cool... YES!!!!!

I hope everyone has a great Thanksgiving, be thankful for every happy moment you have, you never know what life is gonna throw at you next Love Always and Forever Cyndy.

Back on the Rollercoaster

Unfortunately although we had a great Halloween we noticed Baybeblue starting to make some new eye fluttering. It got a little more frequent and then a couple times I thought I saw a couple jerks. Then about a week ago Baybe was sleeping on the floor and woke up wrenching her body and screaming at the top of her lungs. I swooped her up and calmed her down and chalked it up to a bad dream or maybe she was laying on her arm or neck wrong and it hurt when she woke up idk. But then it happened... Laying next to me in my bed she thrust her whole body suddenly and started screaming like an invisible person just walked up and punched her. She cried for about 30-45 seconds until I got her to look at me and she calmed again but then passed out hard. There was no confusion about what had happened now because I have seen this before many times, This was a crying seizure. NOOOO not again these were the worst seizures by far not in the sense that she cant breath or that they last too long because there have been many worse in that way, but this kind hits me differently, right in the heart. These are the seizures that I went through for 2 years trying to convince some doctor somewhere that these were seizures and watching her look like she was suffering in so much pain. THere was never anything I could do but hold her and sometimes they got so bad she would cry for hours several times a day. These ones that are happening now are really short but like I said slowly progressed from an eye flutter so Im nervous that they will still get worse. I planned on calling the doctor after she had 7 more the next day but decided to collect some info first so I took her temp and it said 97.0 which is a little low for her and we have had hypothermia before so I got another thermomater and checked again (rectally always) and again 97.0. I proceeded to check 5 different thermomaters and got all the same result. I then did a catheter on her and collected urine to test for any blood or high results that might indicate she was beginning an infection. I used the test strips I always use and looked for the normal things nitrates and blood, ketones, glucose etc.. which all were totally normal. Except there was on result that made no sence. I had never been asked to watch for this nor had I ever heard of it. The strip said she had and unusual level of urobilinogen. I used this info and called the Doc and of course they told me to bring her in for blood tests. Although I hate when she has to be poked I knew that we had to confirm the high level and figure out why it ws happening. By the time I got to the hospital and we started her examination I started to notice a rash on her arms and searched all over and it was on her belly and chest, face and behind her ear. After being at the hospital all day, the test confirmed that her urobilinogen level was elevated but normally this meant there was a problem with the liver and when they did a liver function test it looked fine so they were completely confused. They told me since she didnt have a fever or any other really severe symptoms they told me to observe her closely for the next week to watch for any new symptoms or fever and if so then bring her back in, otherwise we were to come back in a week for new tests. Meanwhile they want me to set up appt with neurology even though there is nothing they can do, but it is time for her to get a new EEG and Mri, it has been a while. Then I have to set up an aprt with uerology to do new tests to make sure her kidney refluxe is still under control. Then it will be endocrynology to talk about whether we can try and come off the saline diet and try some real formula and see what happens since her calcium has been staying at a nice spot for a while. THEN its time for a new swallow study!! This means they will test her to see if she can swallow bites of food yet. I have high hopes since I havent heard her asperate since she has been off the meds. Other than that she is actually really happy. SHe is so active moving around that she has thrown herself off my bed and restricted to floor play to avoid injuries. Im working on getting her a soft helmit because she keeps smashing her head into everything. I have lots of new videos on youtube so check those out to see her talking and dancing and singing.

Lala and Tay are doing great too. EVeryones in school mode so were focusing on grades and homework and trying to have a little fun in between.

Amazing things are happening for Kevin at work and hes so worried. I know he doesnt need to be because hes amazing at what he does. Iv never met anyone and actually watched there dreams come true, its a pretty cool experience. Ill try not to take too long in between blogs but I got my own stuff going on in my head right now, issues I shouldnt have to be dealing with. I will rise above like always, I hope everyone has a wonderful day and dont let ANYONE get you down :))))

Tribute to Sammi Sparks NEVER forgotten, AlWAYS loved

Sammi Sparks was one of Baybeblue's best friends. He was almost her exact same age and almost exact same diagnosis's. Sammi died this summer out of the blue and broke my whole families hearts wide open. I feel like Baybe is a part of an army fighting for health and a normal life and I feel like we lost one of our soldiers, one of our own. But now we have another angel on our side watching over us, waiting for us, and fighting for us from above. Love you Sammi, Baybeblue is blowing you kisses <3



I have tried to post the link to his memorial video above I might try a few different ways just to see which works best so sorry if its posted multiple times lol ;))

http://www.facebook.com/l.php?u=http%3A%2F%2Fvimeo.com%2F29798809&h=SAQB75N4wAQBqrcYjvppvaUP8M-WtwcQdm1d5yAYFuz0yvg

Hypercalcemia

This hypercalcemia issue has been on my mind alot lately I have been doing alot of research on it and the sad thing is there isnt really anything out there that Im really looking for and thats someone else who has dealt with this. We had IFSP meeting yesterday where we meet with all Baybes therapist together and go over last years goals and make new ones for next year. I was talking to there nurse about her situation and I just find it amazing that Baybe has full osteoperosis from having no calcium and her diet consists of saline and non calcium formula and yet she seems to be getting stronger and stronger. She hasnt had a broken bone or injury in over a year and we dont treat her fragile we treat her like a normal kid. she has made so much progress since coming off the meds, saying words and connecting with everyone. Not to mention that she moves her body all over the place and can wiggle herself across the floor. So why isnt anyone studying what is going on with her, if I was a doctor it would fascinate me. Its almost like somehow her bones are figuring out a way to grow and be strong with the calcium and that is unheard of, well atleast from what I can find. Im in the process now of finding her some new neurologists that will stay around for a while since ohsu switches docs around so much. We are going to be working on more communication techniques and even potty training. I just really wish I could find some answer to why the hypercalcemia wont go away or atleast what is causing it. I have removed almost ever element in her life that could have an effect on her and nothing worked. We are at a safe level as long as we keep saline in her diet but really how long is that gona work and how long are her organs going to be able to handle the saline everyday that they are not designed to handle. And then I worry about her kidneys, hypercalcemia sticking around too long causes kidney stones which will be terrible pain for her and then eventually her kidneys will give out and then she will be on dialasis and its just a long ugly road that I am scared to death to go down. I wish there was someone we could go see that could help us but we have already worked with the number one calcium specialist in the world and he had never seen this and his only option was that med that is dangerous and im just not willing to take that risk. Anyone out there than knows any doctors or anyone that has suffered from hypercalcemia with an unknown cause please contact me, any info helps :)))

Its been a long time....

http://www.facebook.com/l.php?u=http%3A%2F%2Fphotos.parents.com%2Fcategory%2Fvote%2Fphoto%2F1067666&h=zAQC_Ibta

If the above link works please go vote on Baybes summer picture, its the first time I have ever entered pics to a contest but it would be cool if she won!!

Things have been crazy but in a good way. We spent the summer camping a bunch of times and going to the beach and swimming it was amazing. Baybeblue is doing great with only a few small normal incidents in the last year. One of the times we went camping she got a stomache bug and wouldnt keep down anything. She ended up throwing up on almost every blanket we brought and although we tried to wash them in the river, it just wasnt a pretty situation. She especially enjoyed the warm springs, we got creative with floaties and she just loved it. She also did great at wild waves we just went in the warming pools and she was so happy. sunblock worked great and so no sunburns. I think her favorite thing of all was going to the beach because she loves the heated indoor pool there.

We had one short hospitalization just as a precaution..a 4 day precaution but she got a UTI which is dangerous for her because she has kidney reflux. the tests finally came back and it was ecoli that she gave to herself from the diarhea she had before that.

Just as the beautiful summer was over we recieved some horribly sad news. Sammi Sparks who was one of Baybes best friends passed away unexpectadly. he was fine and then he developed a pnuemonia. The antibiotics werent working and it took over his lungs until he could no longer breath. It was a very long tearful 10 day wait for his viewing and funeral. Watching his mother Tisha and his father Todd was one of the hardest things I have ever dealt with. I cried for so many hours the my face hurt. His viewing was beautiful and every detail perfectly planned out. there were pictures of him everywhere and all his special stuff out along with a big poster to sign and little peices of paper to write him a note that later would be tied to balloons and released at his funeral the next day. I walked in and went strait to his body and he looked beautiful like an angel. I held Baybeblue up by him so they could say goodbye. I had earlier that day had Baybeblue draw him a picture and then I wrote a letter to him and we placed it in his casket with him. I sat and stared at his little sweet face for over 4 hours. I watched all the family members and friends one by one come in and say goodbye and everyone was just crying there hearts out. I was going to leave before they did the rosary but when the time came felt unable to move so I stayed and we all did the rosary together over Sammi. After the rosary it was time for Sammis body to go so the parents opened there resteraunt for an after party. I sat and watched the devastated look on Tishas face until her younger and very cute daughter Londyn jumped into her lap and a beautiful smile came over her face because she had to be strong for her, it was also very difficult to watch. The next day was his funeral and although Lala and Tay didnt feel comfortable going to the viewing, we all attended the funeral together. It was amazing and sad and deep and life altering all at the same time. Layla and Taylor both cried and that meant alot to me, sometimes I think that all the bad things we have had to deal with will make them numb but they felt Sammis families pain and they just like me could be so thankful that it was not us going through this cause it very well could be one day. The funeral had an amazing memorial video I will add on here if I can figure it out, probably just a link to it. We made it through the hard few days and have been up several times to visit his beautiful spot and brought him flowers and balloons. I am very proud for how my children handled themselves and I am very thankful that I had a loving shoulder from Kevin to help carry me through all of this. Sammi will never be forgotten and he opened all of our eyes to how presious every moment with Baybeblue really is.

Kevin and I had our one year anniversary, can you believe it?? I have never been with anyone for a full year without something horrible happening. a few months ago Kevin tried talking me into getting a tattoo on my neck and i said no way. so for his anniversary gift I got us both matching tattoos on our neck and he was very happy and we love them :)) My gift was a fat pair of diamond earings that I really wanted. <3 We went to a fancy dinner at amadeas and had a fun night out playing pool. I love Kevin and if all goes well we could have a real life future that we plan together including more children. Since he is 23 he would still like to have children of his own....that thought to be continued after I have more than a promise ring on my finger!!

I guess now its time to start planning halloween then christmas and then.....BAYBEBLUES BDAY BASH 2012!!!

Ill add pics later, I forgot Im using Lalas computer while mine is being stupid! tons of new pics on my facebook page, Cyndy Campobasso, and some great new videos on our Youtube page of Baybe talking, dancing, and singing :))) CHeck it out and dont forget to go vote for her summer Pic on parents.com the link is at the top

Not enough hours...

It has been a crazy last few months, I cant believe how fast it has gone by. first let me start off by recapping... Christmas was awsome, It was our first xmas having Kevin with us and it was my first xmas not single. :) Basically everyone got what they wanted, we somehow fit time with every single part of the family including kevins family who I LOVE!! and most importantly and amazingly everyone was as healthy and happy as we could be. Then comes New years by this time everyone else was doin fine but i had injured my shoulder and got a kidney infection so I was in bed for New Years, but we had extra kids over and still had a perfect midnite. Now its time to bust butt and make everything amazing for my daughters big day. flyers have been made and distributed, a very wonderful women offered to buy a cake for the party so we got that, Ohsu announced the event, black rock and a few other businesses already have said they are making donations and even whn we got the flyers printed they saw what it was for and gave us them for free :) The kids both took flyers and passed them all out at school, and now...Baybeblue gets sick. She hasnt been sick for months and all the sudden she starts throwing up, then the next day she has a fever and sleeps all day, no more pretty smiles today :( today is day three and we were up last night trying to suction her out and had to pull out the pulse oximeter and monitor her stats all nite, which sat at around 93 which is ok as long as it doesnt go any lower. I REALLY dont want to have to bust out the oxygen too. Im just hoping and praying that she is ok tommorrow, I wont make her miss the whole party, but she wont be able to stay if shes throwing up or has a fever. So sad, the one thing i cannot control, is the one thing i want the most. I just wanted her to hav an amazing day so bad. Now even if she makes it there i dont know if shele be able to enjoy it. Today will be about all the final arrangements and tomorrow will b Baybe spa day, I have committed to myself to have everthing ready today so that i can focus on only her tomorrow. See you all there :)

Baybe's Birthday Benefit Bash!

BAYBEBLUE'S BDAY BENEFIT