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WOW, IS TODAY A WONDERFUL DAY OR WHAT?!?!? Im sure many of you havent heard but California Stem Cell, Inc. and Families of Spinal Muscular Atrophy Announce Completion of Pre-IND Meeting with FDA for Stem Cell-Derived Therapy for the Treatment of Spinal Muscular Atrophy Type I!!!! This means we are just way closer to the cure and have one less hurdle to overcome!
I read the news this morning as I was doing my daily search on Stem Cell therapy updates. I cried as my heart raced and my feet trembled for this is the beginning of great news that my life has been waiting for! Bella was sleeping and I knew i couldnt bother her but I wanted to run in the room and yell "MAMA'S WAKE UP!!! WAKE UP!!! THE CURE IS EVEN CLOSER NOW!!!!" and hug her and kiss her!! This fight has NOT been easy and many people have been such dicks (for lack of a better word) but Brandon and I kept our prayers high and faith strong because we knew that threw Christ anything is possible!! Im not going to convince myself yet that my daughters cure is just a few more hectic months/years away because I dont want to let myself down but oh man is that hard to do when I read such wonderful and delightful news!
This isn't just any news, this is news about life! About saving thousands and thousands of babies, and toddlers, and adults who have to live everyday in a body that refuses to work hand in hand with their mind. Families like mine are rejoycing today, screaming at the top of their lungs "THANK YOU GOD FOR LISTENING AND DELIVERING!!" Tonight will be a night of celebration for all those directly and indirectly affected by SMA. This may not be the green light to begin stem cell therapy for SMA but you know what...its one darn step closer!!!
Bella is thriving like you wouldn't believe doing more and more impresive things as the days pass! She understands everything you say to her and she tries to mimic everything you do. Aside from everything Ive already ;listed on this blog that she has accomplished she now gives you her hand when you ask her for it. Its the most beautiful feeling when I ask my daughter to give me her hand so we can pray and she does. I dont get to feel that rush of emotion when you finally see your baby take its first step, or sit up unassisted, or even begin to crawl, but my experiences with her are soooooooooooo much better because my experiences are those that I was told we would NEVER have. So yes, a lift of her hand is a big deal. And yes, and good 90 degree turn of her head when she is sitting up assisted is a big deal. Bella is my big deal :)
Im so excited I can hardly contain myself, so I must stop blogging for today because all I really want to do is yell at the top of a mountain "THANK YOU THANK YOU THANK YOU!!!!!!!!!
Wednesday, October 14, 2009
Saturday, October 3, 2009
Finally able to update :)
Hey guys, im so sorry for the long time off the blog but life has definetly been crazy for my family. Brandon, Bella and I moved (for the 3rd time lol) to Adelanto. We are staying with my Nina and Nina and thankfully they have been able to help push us forward. I stated in my last blog that we found a little home to rent in Corona but after being here with my Nina and Nino we have decided that the time to buy a new home is now.
My Nina and my cousin Audry have been great guides in the process so I feel good about every move we take :) We have been looking at a few homes and WOW they are just jaw dropping!! The best part is they these are new homes and they are going for $75k!! That means we would have a mortgage of $800!!! The economic stimulus package for new home buyers is too good to pass up so Brandon and I figured we would take advantage of it now. We plan on buying cheap and in a few years when the economy recovers sell. The house will be worth three times what we purchased it for so with the money we pocket we would purchase the home of our dream in whatever area we want :) It an investment for our future and for the future of our children!!
Speaking of children, Bella Mia is having the time of her life living here with my Nina! Everyone here just cant get enough of her so Bella is getting attention 24/7. Unfortunately, I think it keeps her too excited because she has no longer wanted to sleep past 3am!! She hears my Nino up and getting rready and guess what....SHE WANTS TO GET UP AND BE ALL UP IN THE BUSINESS! Her new schedule has really taken a toll on me but oh well, what can I do?
Bella has also begun to speak!!! She says "A-coo!!" and "Agua" sooooo clearly it makes me cry!!! On September 20, 2009 I layed her down for her morning nap and as I began getting things ready she layed there mumbling to herself as usual. And out of no where she begins to yell "A-cooo!! A-coo!!" OMG, MY heart stopped out of excitement!! I ran out of the room and called my Nina so she can listen, We stood at the door way and listed for like 5 minutes as bBella shouted "A-cooo!!" We giggled silently so we wouldnt distract her and Bella went on for another 15 minutes :D
And on October 25, 2009 I was getting her ready for bed and again as she layed there waiting to be put down to sleep she blabbered on and on and out of no where said "Aaaaaagua!" I turned around to look at her stunned and gently repeated it for her. She heard me and continued..."Aaagua." At that moment Brandon walks in with her milk and he repeates it to her and sure enough she says it back. Brandons jaw fell! We couldnt believe out little girl was not only beating the odds of her condition but she was growing up soooo fast!!
As you can see our life has been full of wonderful little surprises but a few hurdles have been thrown our way. On September 21, 2009 I had the scare of the year. Bella was napping in her playpen but also whimpering because the bipap mask has been bothering her lately. The mask is only supposed to cover her nose but it seems to slip down gradually and practically swallow her upper lip. I went to her and readjusted the mask. I placed it a little higher on her upper lip so that I could prevent it from swallowing it. She closed her eyes and it looked like she was finally comfortable. I stayed there starring at her to make sure she didnt cry again and the next thing I notice, she turned pale and her lips were blue. I looked at her stomach and it wasnt moving. I almost passed out because Bella was no longer breathing! I took her mask off and gently slapped her cheeks. Nothing. I began performing CPR on her. Nothing. I ran out of the room and yell "Nina...CALL 911!! Bella isn't breathing!" While she ran for the phone I began to bag Bella. I squeezed and squeezed air into her lungs and after about 3 minutes on bagging her Bella opened her eyes!!!! My Nina was still panicing and brought me the phone. She was so worried that she couldnt dial 911. I took the phone , called 911, explained what had happen and they sent an ambulance immediately. The abulance got here, check out Bella and said I had done a great job and that Bella seems ok. I called Brandon, we drove home from work and we packed our stuff and headed straight fopr the CHOC. I wanted to make sure their was no neurological damage done to her while she was on concious.
They admitted her and we spent a night at the hospital again with Bella just to monitor her. This entire episode was my fault. I had placed the mask too high and I blocked her nasal airway. As scary as this was, I was happy that it wasnt her condition that caused her to stopped to breathing because that would have been beyond bad. Thankfully she was ok :)
While Bella was in the hospital I decided to go to the ER myself because I had a pretty bad cold and I wanted them to check me out and prescribe me some antibiotics. They listened to my lungs, her I was conjested and decided that I indeed needed some antibiiotices. But before they could prescribe anything that needed to make sure I wasn't pregnant. They had me take a urine pregnancy test and much to our surprise it came back positive.
The ER doctor performed an ultrasound and yup...right there on the screen was a little dot with a tiny heart beat. I didn't know what to think. I was scared, nervous, confused, and happy all at the same time. All these questions began to run threw my mind. How the hell was I going to do it alone with 2 babies? Especially with Bella being sick? What if this baby has SMA? What would we do? What is it didn't have SMA? What then?
The one good thought that crossed my mind was that the babys cord blood cells would be perfect for Bella's Stem Cell Treatment!! The only better stem cells to cure a disease than your own are those of a sibling. Maybe this baby was a gift from God to not only give Bella a playmate but also give her a chance at a healthy normal life!!! Of course. this baby would need to be healthy and not have SMA in order for the stem cells to be pure.
I had found out months ago from my geneticist that if I were to ever get pregnant again, they can do an amnio at 16-20 weeks to test the baby for SMA. With this in mind, I was in a hurry to find out how far along I was so that I could quickly schedule the amnio. I went to see a new OB/GYN and he performed an ultrasound telling me I was 8 weeks pregnant. GREAT!! ONLY 8 MORE TO GO!! He referred me to a genetisist her works with and I made an appointment for a consultation.
Believe me when I say that I am terrified about this pregnancy. Their is so much to consider and question. Is this baby going to be healthy? How am I goin to raise 2 children alone with one requiring so much of my time and energy? What if this baby also has SMA? And on and on and on.
I know a cure is around the corner but getting a baby with SMA to that point is no easy task. Taking care of just Bella wears me out to the point of sever exhaustion and extreme sleep deprevation. There are days that I cry and cry because its just sooo overwhelming and difficult. Another baby sounds crazy right now but what am I supposed to do? I already unwillingly lost one...I am not about to willing abort another. Thats not who I am. But am I doing my child justice if it is sick bringing it into this world? Yes and No I think. Yes because a cure is around the corner and no because I dont know an exact date for the cure. I am not asking for advice so please dont begin to give it. This is mine and Brandons baby so this will ultimetly be our decision. Believe me when I say we know and understand all the options that are in front of us. We probably know about more options than you so we really ask that everyone keep there comments (whether good or bad) to themselves.
I am praying and talking with God all day everyday asking that he guide me to the correct decision. God will provide and I just need to have faith that he will help me make the decision that is best for me and my little family.
I promise to try and stay ontop of this blog to keep you all updated but you have to understand how hard it is for me to get a free hour to do this. My life is a 24/7 job and my job is my dedication to my Beauty and my husband.
I ask that you keep you in your thoughts and prayers and also that you refrain from speaking poorly about our situation becase we dont need bad thoughts or words floating around the universe.
Thank you to all those who have stuck by our side and continued to be a driving force in our life. Because of you, we have gotten to this point. The rest of you who have talked behind our backs, used us, turned your backs due to stupid reasons, and yet still try read my blog to be nosey and still try to find out how we are doing....I wish you the best. Its quite the honor that you can't get enough of us even though you pretend to stay away. God bless your intentions.
Bren
My Nina and my cousin Audry have been great guides in the process so I feel good about every move we take :) We have been looking at a few homes and WOW they are just jaw dropping!! The best part is they these are new homes and they are going for $75k!! That means we would have a mortgage of $800!!! The economic stimulus package for new home buyers is too good to pass up so Brandon and I figured we would take advantage of it now. We plan on buying cheap and in a few years when the economy recovers sell. The house will be worth three times what we purchased it for so with the money we pocket we would purchase the home of our dream in whatever area we want :) It an investment for our future and for the future of our children!!
Speaking of children, Bella Mia is having the time of her life living here with my Nina! Everyone here just cant get enough of her so Bella is getting attention 24/7. Unfortunately, I think it keeps her too excited because she has no longer wanted to sleep past 3am!! She hears my Nino up and getting rready and guess what....SHE WANTS TO GET UP AND BE ALL UP IN THE BUSINESS! Her new schedule has really taken a toll on me but oh well, what can I do?
Bella has also begun to speak!!! She says "A-coo!!" and "Agua" sooooo clearly it makes me cry!!! On September 20, 2009 I layed her down for her morning nap and as I began getting things ready she layed there mumbling to herself as usual. And out of no where she begins to yell "A-cooo!! A-coo!!" OMG, MY heart stopped out of excitement!! I ran out of the room and called my Nina so she can listen, We stood at the door way and listed for like 5 minutes as bBella shouted "A-cooo!!" We giggled silently so we wouldnt distract her and Bella went on for another 15 minutes :D
And on October 25, 2009 I was getting her ready for bed and again as she layed there waiting to be put down to sleep she blabbered on and on and out of no where said "Aaaaaagua!" I turned around to look at her stunned and gently repeated it for her. She heard me and continued..."Aaagua." At that moment Brandon walks in with her milk and he repeates it to her and sure enough she says it back. Brandons jaw fell! We couldnt believe out little girl was not only beating the odds of her condition but she was growing up soooo fast!!
As you can see our life has been full of wonderful little surprises but a few hurdles have been thrown our way. On September 21, 2009 I had the scare of the year. Bella was napping in her playpen but also whimpering because the bipap mask has been bothering her lately. The mask is only supposed to cover her nose but it seems to slip down gradually and practically swallow her upper lip. I went to her and readjusted the mask. I placed it a little higher on her upper lip so that I could prevent it from swallowing it. She closed her eyes and it looked like she was finally comfortable. I stayed there starring at her to make sure she didnt cry again and the next thing I notice, she turned pale and her lips were blue. I looked at her stomach and it wasnt moving. I almost passed out because Bella was no longer breathing! I took her mask off and gently slapped her cheeks. Nothing. I began performing CPR on her. Nothing. I ran out of the room and yell "Nina...CALL 911!! Bella isn't breathing!" While she ran for the phone I began to bag Bella. I squeezed and squeezed air into her lungs and after about 3 minutes on bagging her Bella opened her eyes!!!! My Nina was still panicing and brought me the phone. She was so worried that she couldnt dial 911. I took the phone , called 911, explained what had happen and they sent an ambulance immediately. The abulance got here, check out Bella and said I had done a great job and that Bella seems ok. I called Brandon, we drove home from work and we packed our stuff and headed straight fopr the CHOC. I wanted to make sure their was no neurological damage done to her while she was on concious.
They admitted her and we spent a night at the hospital again with Bella just to monitor her. This entire episode was my fault. I had placed the mask too high and I blocked her nasal airway. As scary as this was, I was happy that it wasnt her condition that caused her to stopped to breathing because that would have been beyond bad. Thankfully she was ok :)
While Bella was in the hospital I decided to go to the ER myself because I had a pretty bad cold and I wanted them to check me out and prescribe me some antibiotics. They listened to my lungs, her I was conjested and decided that I indeed needed some antibiiotices. But before they could prescribe anything that needed to make sure I wasn't pregnant. They had me take a urine pregnancy test and much to our surprise it came back positive.
The ER doctor performed an ultrasound and yup...right there on the screen was a little dot with a tiny heart beat. I didn't know what to think. I was scared, nervous, confused, and happy all at the same time. All these questions began to run threw my mind. How the hell was I going to do it alone with 2 babies? Especially with Bella being sick? What if this baby has SMA? What would we do? What is it didn't have SMA? What then?
The one good thought that crossed my mind was that the babys cord blood cells would be perfect for Bella's Stem Cell Treatment!! The only better stem cells to cure a disease than your own are those of a sibling. Maybe this baby was a gift from God to not only give Bella a playmate but also give her a chance at a healthy normal life!!! Of course. this baby would need to be healthy and not have SMA in order for the stem cells to be pure.
I had found out months ago from my geneticist that if I were to ever get pregnant again, they can do an amnio at 16-20 weeks to test the baby for SMA. With this in mind, I was in a hurry to find out how far along I was so that I could quickly schedule the amnio. I went to see a new OB/GYN and he performed an ultrasound telling me I was 8 weeks pregnant. GREAT!! ONLY 8 MORE TO GO!! He referred me to a genetisist her works with and I made an appointment for a consultation.
Believe me when I say that I am terrified about this pregnancy. Their is so much to consider and question. Is this baby going to be healthy? How am I goin to raise 2 children alone with one requiring so much of my time and energy? What if this baby also has SMA? And on and on and on.
I know a cure is around the corner but getting a baby with SMA to that point is no easy task. Taking care of just Bella wears me out to the point of sever exhaustion and extreme sleep deprevation. There are days that I cry and cry because its just sooo overwhelming and difficult. Another baby sounds crazy right now but what am I supposed to do? I already unwillingly lost one...I am not about to willing abort another. Thats not who I am. But am I doing my child justice if it is sick bringing it into this world? Yes and No I think. Yes because a cure is around the corner and no because I dont know an exact date for the cure. I am not asking for advice so please dont begin to give it. This is mine and Brandons baby so this will ultimetly be our decision. Believe me when I say we know and understand all the options that are in front of us. We probably know about more options than you so we really ask that everyone keep there comments (whether good or bad) to themselves.
I am praying and talking with God all day everyday asking that he guide me to the correct decision. God will provide and I just need to have faith that he will help me make the decision that is best for me and my little family.
I promise to try and stay ontop of this blog to keep you all updated but you have to understand how hard it is for me to get a free hour to do this. My life is a 24/7 job and my job is my dedication to my Beauty and my husband.
I ask that you keep you in your thoughts and prayers and also that you refrain from speaking poorly about our situation becase we dont need bad thoughts or words floating around the universe.
Thank you to all those who have stuck by our side and continued to be a driving force in our life. Because of you, we have gotten to this point. The rest of you who have talked behind our backs, used us, turned your backs due to stupid reasons, and yet still try read my blog to be nosey and still try to find out how we are doing....I wish you the best. Its quite the honor that you can't get enough of us even though you pretend to stay away. God bless your intentions.
Bren
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