Wednesday, October 19, 2011

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 :)))

Monday, October 10, 2011

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