.JPG)
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
Tuesday, September 8, 2009
When one wheel turns, the rest will follow
It seems as though at least one wheel has begun to spin :) We found a charming little house for rent in Corona over the weekend and the rent is a dream! We automatically save $350 a month with just the rent! I hae also spoken with our credit card companies about our situation and our financial ability and fortunately they are willing to help work with us as well on dropping our monthly bill by over 50%! That is a savings of another $300 a month! All the money that is being saved will help pay for Bella's medical necessities and what is left over will be put in savings for a home. The only small down side is that the home has no appliances but with the help of craigslist and asking around, finding reliable and cheap $appliances shouldnt be a problem.
It was a necessity that we get our own home because Bella needs air conditioning and a clean environment to live in. My dad was gracious enough to offer me everything he had but I knew Bella needed more. Now with our own place, her own room, and my cleaning standards Bellas needs will be met and finally I will be able to get the in-home nursing assistance that I so desperately have needed since Bella has come home.
Yesterday afternoon my bestfriend Tiana stopped by to pay us a little visit on her way back home to the East Bay. She held a garage sale for Bella just a week ago and raised $180! She brought us these funds and today I hoping to make it to the bank and deposit the money into Bellas savings account. I have great friends who go to great lengths to help us when they see we are in need. Even friends that I haven't spoken with since high school. They surprise me with their generosity and I dont know how to say "thank you" without saying "thank you." My friends on the other hand do know how to say "your welcome" without actually saying "your welcome." They keep in contact, they see the bigger picture, and they put the small and insignificant details aside because they understand that the fight my family is fighting is greater than the mistakes or misunderstandings made in the past.
Forunetly for me, those who dont understand that have already made it to the exit. I already asked for those who are negative and unwilling to see the big picture to take their anger and resentment elsewhere. Bella is THRIVING and growing and happy and im glad that those who really want to be a part of her cure and her life are still here. They deserve to be. They have proven to care. And it is these people who will be there to celebrate with Bella when the cure saves her life.
Its only 3 1/2 weeks until my life will gain a small sence of normalcy. I can't wait for they day that I blog about that :)
It was a necessity that we get our own home because Bella needs air conditioning and a clean environment to live in. My dad was gracious enough to offer me everything he had but I knew Bella needed more. Now with our own place, her own room, and my cleaning standards Bellas needs will be met and finally I will be able to get the in-home nursing assistance that I so desperately have needed since Bella has come home.
Yesterday afternoon my bestfriend Tiana stopped by to pay us a little visit on her way back home to the East Bay. She held a garage sale for Bella just a week ago and raised $180! She brought us these funds and today I hoping to make it to the bank and deposit the money into Bellas savings account. I have great friends who go to great lengths to help us when they see we are in need. Even friends that I haven't spoken with since high school. They surprise me with their generosity and I dont know how to say "thank you" without saying "thank you." My friends on the other hand do know how to say "your welcome" without actually saying "your welcome." They keep in contact, they see the bigger picture, and they put the small and insignificant details aside because they understand that the fight my family is fighting is greater than the mistakes or misunderstandings made in the past.
Forunetly for me, those who dont understand that have already made it to the exit. I already asked for those who are negative and unwilling to see the big picture to take their anger and resentment elsewhere. Bella is THRIVING and growing and happy and im glad that those who really want to be a part of her cure and her life are still here. They deserve to be. They have proven to care. And it is these people who will be there to celebrate with Bella when the cure saves her life.
Its only 3 1/2 weeks until my life will gain a small sence of normalcy. I can't wait for they day that I blog about that :)
Tuesday, September 1, 2009
My baby CAN read!!
So we all understand that Bellas disability prohibits her from hitting her developmental mile stones. But we also understand that these babies are abnormally bright since there mind makes up the slack from there body. These babys can't feel or grab what they want so instead they visually examine it and when we (adults) show something to them they carefully listen to our description and observe how it works.
My dad bought Bella the "My Baby Can Read" set when I was 7 months pregnant because it was his dream to see her reading flash cards at 6 months and actually acting out and understanding what the cards said. I began using the videos, cards, and books on August 26th and 6 days later Bella can read 3 cards: "Arms up" "Mouth" and "Tiger!!!!" You can only imagine my astonishment!!!! I show her every single card and practice them all with her but I do focus on the cards that would be easiest for her.
When Bella was 4 months and pre-hospitalized I taught her to sign "Milk" and withing days she had it down. No,, at 6 months, my Bella Einstein is reading!!!!! My daughter is simply the most amazing little person on this planet and she never seizes to amaze me.
Bella not only can read, act out what she reads, and sign she can also mover her hands to the song "Where is pointer...where is pointer...here I am...her I am." I noticed that my mom would sing that song over and over to her and Bella loved it because she could get involved with the song by using her fingers and hands. So I began practicing that song and motions with her and sure enough she now interacts with me when I sing "Where is pointer.."
And if that isn't enough, she is getting rather good at rolling onto her back from her side! Ill place her on her side to rest her back for a while and if Bella prefers to go back onto her back she will start pushing her shoulder backwards, bring her free arm up and around, then turns her head in the direction she wishes to go! Her strategizing skills are impressive but what really impressive is that I was told she would never be able to and she has!
Bella is one-of-a-kind and I am so grateful for everything God had given to me through her. As I struggle in every way everyday, I still get her smile, her giggle, her touch, and her happiness and to me is all the riches I'll ever need!
My next cognitive game with her is the "Memory" card game. I actually bought a memory card game a while back for brandon and I to play because we both have the worst memory but we never did. Just the othe day, my mom brought Bella the Memory game and I was sooo excited because its one more game we can challenge her mind with! Hopefully in a few weeks Ill be able to report that Bella can now play the memorization game, read and act out what she reads, sign, and even reach mile stones she was tols she wouldn't!
Persistance pays off people!
Success seems to be largely a matter of hanging on after others have let go -William Feather
My dad bought Bella the "My Baby Can Read" set when I was 7 months pregnant because it was his dream to see her reading flash cards at 6 months and actually acting out and understanding what the cards said. I began using the videos, cards, and books on August 26th and 6 days later Bella can read 3 cards: "Arms up" "Mouth" and "Tiger!!!!" You can only imagine my astonishment!!!! I show her every single card and practice them all with her but I do focus on the cards that would be easiest for her.
When Bella was 4 months and pre-hospitalized I taught her to sign "Milk" and withing days she had it down. No,, at 6 months, my Bella Einstein is reading!!!!! My daughter is simply the most amazing little person on this planet and she never seizes to amaze me.
Bella not only can read, act out what she reads, and sign she can also mover her hands to the song "Where is pointer...where is pointer...here I am...her I am." I noticed that my mom would sing that song over and over to her and Bella loved it because she could get involved with the song by using her fingers and hands. So I began practicing that song and motions with her and sure enough she now interacts with me when I sing "Where is pointer.."
And if that isn't enough, she is getting rather good at rolling onto her back from her side! Ill place her on her side to rest her back for a while and if Bella prefers to go back onto her back she will start pushing her shoulder backwards, bring her free arm up and around, then turns her head in the direction she wishes to go! Her strategizing skills are impressive but what really impressive is that I was told she would never be able to and she has!
Bella is one-of-a-kind and I am so grateful for everything God had given to me through her. As I struggle in every way everyday, I still get her smile, her giggle, her touch, and her happiness and to me is all the riches I'll ever need!
My next cognitive game with her is the "Memory" card game. I actually bought a memory card game a while back for brandon and I to play because we both have the worst memory but we never did. Just the othe day, my mom brought Bella the Memory game and I was sooo excited because its one more game we can challenge her mind with! Hopefully in a few weeks Ill be able to report that Bella can now play the memorization game, read and act out what she reads, sign, and even reach mile stones she was tols she wouldn't!
Persistance pays off people!
Success seems to be largely a matter of hanging on after others have let go -William Feather
Thursday, August 27, 2009
Constipation is not fun
It has been almost 6 days since Bella has had a bowel movement. We were giving her half a glycerin suppository once a daywith no result. We also would stimulate her by using a rectal thermomenter but still no good result. I finally could not let her go any longer without having a bowel movement so after talking ot Brandon about it we decided to make her an immediate appointment to the pediatrician to either get her a fleet enema or some laxatives. The Pediatrician felt her belly and sure enough he felt a very hard stool stuck in her. He prescribed her Miralax for her constipation and asked that we give her double the recommended dosage just the first time to help her out then give her the regular dosage once a day everyday to keep her regular. My inly concern with Miralax was that its just a laxative; its not a stool softner so her poop was going to be forced out whole. That was going to be so painful for Bella so I knew I was going to have to research another option.
He also listened to my concern about the Minnie Button infection. I am completly happy with the results that the antibiotic Bactrim has had but I wanted a topical cream to help fight any potential fungus infection on the surface of the skin. He prescribed Nystatin which is a powder that you can rub on the infected sight it it looks red or irritated. Finally, I had a way to fight the infection from both the inside and out. Hopefully noe, i can get rid of this infection for good.
The Pediatrician brought up a shot called the RSV shot. The RSV shot (Respiratory Syncytial Virus shot) is given to babies once a month who are at high risk for severe RSV. Because lung infection is the leading cause of death to SMA children it is important for us to consider any medication that can help prevent symptoms before they start. Im glad the Pediatrician told us about this shot because I had never read anything about it. Its one more weapon is our pocket to help fight SMA! Im planning on bringing it up to Bella's Pulmonologist at our next appointment which is in 2 weeks :)
The very next day we had another appountment but this time with the GI doctor. They looked her Minnie Button and said it looked great. She had a small granuloma beginning to grow under the Minnie Button but they werent conserned. They said its so small that it isnt even an issue. If it gets bogger and begins to obstruct the Minnie Button, the doctor said they can burn it off. Kinda scary but Im glad there is something they can do about it.
I brough tup to them that I believed her constipation was caused by her formula. She was prescribed Elecare when we were discharged and for whatever reason the order was never placed with our provider. I had her on Neocate in the mean time and her consitipation just worsened. Not only does the Neocate and Elecare cause constipation but it doesnt not help her sweating at all and this has become a new issue for me. The GI doctor asked which formula would work best and I explained that the Amino Acid diet was very important for SMA babies and that Vivonex is what almost every baby with SMA uses. She spoke with the dietician and of course she said no. Vivinex is primarily used for children over 2 blah blah blah. They are not experts on SMA nor do they have all the information that I do so it irritated me that they just shot my opinions down so quickly. Im planning on calling the dietician myself and raising hell because its necessary for Bellas care to to first class. Not because I want the best of the best, but because her conditions requires it.
The GI doctor also decided that Miralax wasnt the best option for Bella because it wont soften her stool. She prescribed Milk of Magnesia (a stool softener) at 5mls 3xDay for 2 days. Then 3-4 mls once daily to keep her regular. Once Bella is back to normal and stooling once day without straining, than we can switch her back to Miralax. She explained that Milk of Magnesia will give Bella diarrhea which is what she needs to clean her out, but diarrhea os a bad thing when its not necessary. That is why we will put her back on Miralax after she's nice and emptied. lol
The GI finally placed the order for Elecare and we should be recieving it in a few days. In the mean time, she gave me three cans and I started Bella back on Elecare this afternoon. Hopefully, when I get a hold of the dietician I can get her on Vivonex and put this mountain behind me.
Bella's weight has been increasing at what her GI doctor says is a perfect rate :) She is exactly where she should be weighting in at 13.7lbs and measuring 25.5 inches! I makes me feel good that all our efforts, both her doctors and mine, are paying off!
And for some great news...Bella got accepted as a candidate for the Valproic Acid/Carnitine cliniccal trial at the University of Utah. Valproic acid with carnitine has been shown to stimulate the SMN gene that produced the protein necessary to help with motor function. It is only a therapy, not a cure. It will stop or at least slow down the progression of the disease buying us time to get the Stem Cell Therapies going and has even shown to increase strength in some candidates! I still have to fill out the Parent Consent form and email it back to the University but I don't see a problem with us participating. My dad has alrready volunteered to drive Bella and I so all the money raised buy the car wash and the Astro Burger fundraiser will go directly to that trip! We are making it happen guys! God is happy to see us working so hard and therefore he is providing! GOD IS GOOD!!!!!!
Oh yeah, I know many of you have been texting me and emailing me asking how the Astro Burger fundraiser went. It went GREAT!! We made $2,000 and left a lasting impression on many peoples hearts :) Katie Andrianos's (fundraiser coordinator) uncle knows many politicians and has expressed his willingness to help! He wants to know what kind of funding SMA research needs and what it will be used for and with that information he will do anything and everything he can to raise that money! Im on a hunt to find any and all money starved trials and research that is going on to help cure SMA so that he can get a good picture as to what they money will be used for. People have been surprising me left and right with there generosity and persistance!
This pretty much sums up the last 2 days of our SMA fight. Everyday brings a new battle and a new reason to keep going :)
God Bless,
Bren
He also listened to my concern about the Minnie Button infection. I am completly happy with the results that the antibiotic Bactrim has had but I wanted a topical cream to help fight any potential fungus infection on the surface of the skin. He prescribed Nystatin which is a powder that you can rub on the infected sight it it looks red or irritated. Finally, I had a way to fight the infection from both the inside and out. Hopefully noe, i can get rid of this infection for good.
The Pediatrician brought up a shot called the RSV shot. The RSV shot (Respiratory Syncytial Virus shot) is given to babies once a month who are at high risk for severe RSV. Because lung infection is the leading cause of death to SMA children it is important for us to consider any medication that can help prevent symptoms before they start. Im glad the Pediatrician told us about this shot because I had never read anything about it. Its one more weapon is our pocket to help fight SMA! Im planning on bringing it up to Bella's Pulmonologist at our next appointment which is in 2 weeks :)
The very next day we had another appountment but this time with the GI doctor. They looked her Minnie Button and said it looked great. She had a small granuloma beginning to grow under the Minnie Button but they werent conserned. They said its so small that it isnt even an issue. If it gets bogger and begins to obstruct the Minnie Button, the doctor said they can burn it off. Kinda scary but Im glad there is something they can do about it.
I brough tup to them that I believed her constipation was caused by her formula. She was prescribed Elecare when we were discharged and for whatever reason the order was never placed with our provider. I had her on Neocate in the mean time and her consitipation just worsened. Not only does the Neocate and Elecare cause constipation but it doesnt not help her sweating at all and this has become a new issue for me. The GI doctor asked which formula would work best and I explained that the Amino Acid diet was very important for SMA babies and that Vivonex is what almost every baby with SMA uses. She spoke with the dietician and of course she said no. Vivinex is primarily used for children over 2 blah blah blah. They are not experts on SMA nor do they have all the information that I do so it irritated me that they just shot my opinions down so quickly. Im planning on calling the dietician myself and raising hell because its necessary for Bellas care to to first class. Not because I want the best of the best, but because her conditions requires it.
The GI doctor also decided that Miralax wasnt the best option for Bella because it wont soften her stool. She prescribed Milk of Magnesia (a stool softener) at 5mls 3xDay for 2 days. Then 3-4 mls once daily to keep her regular. Once Bella is back to normal and stooling once day without straining, than we can switch her back to Miralax. She explained that Milk of Magnesia will give Bella diarrhea which is what she needs to clean her out, but diarrhea os a bad thing when its not necessary. That is why we will put her back on Miralax after she's nice and emptied. lol
The GI finally placed the order for Elecare and we should be recieving it in a few days. In the mean time, she gave me three cans and I started Bella back on Elecare this afternoon. Hopefully, when I get a hold of the dietician I can get her on Vivonex and put this mountain behind me.
Bella's weight has been increasing at what her GI doctor says is a perfect rate :) She is exactly where she should be weighting in at 13.7lbs and measuring 25.5 inches! I makes me feel good that all our efforts, both her doctors and mine, are paying off!
And for some great news...Bella got accepted as a candidate for the Valproic Acid/Carnitine cliniccal trial at the University of Utah. Valproic acid with carnitine has been shown to stimulate the SMN gene that produced the protein necessary to help with motor function. It is only a therapy, not a cure. It will stop or at least slow down the progression of the disease buying us time to get the Stem Cell Therapies going and has even shown to increase strength in some candidates! I still have to fill out the Parent Consent form and email it back to the University but I don't see a problem with us participating. My dad has alrready volunteered to drive Bella and I so all the money raised buy the car wash and the Astro Burger fundraiser will go directly to that trip! We are making it happen guys! God is happy to see us working so hard and therefore he is providing! GOD IS GOOD!!!!!!
Oh yeah, I know many of you have been texting me and emailing me asking how the Astro Burger fundraiser went. It went GREAT!! We made $2,000 and left a lasting impression on many peoples hearts :) Katie Andrianos's (fundraiser coordinator) uncle knows many politicians and has expressed his willingness to help! He wants to know what kind of funding SMA research needs and what it will be used for and with that information he will do anything and everything he can to raise that money! Im on a hunt to find any and all money starved trials and research that is going on to help cure SMA so that he can get a good picture as to what they money will be used for. People have been surprising me left and right with there generosity and persistance!
This pretty much sums up the last 2 days of our SMA fight. Everyday brings a new battle and a new reason to keep going :)
God Bless,
Bren
Tuesday, August 25, 2009
Are you with me or not?
Our fundraising efforts have been a huge hit not just with my family and friends but with my community! Im not sure if many of you watch KTLA channel 5, but they aired the Astro Burger fundraiser that was held on Monday, August 24, 2009 yesterday at 6:30pm!! Im not sure on the final amount raised as of yet and as soon as I recieve that figure I will be sure to let you know :)
The car wash on Sunday August 23, 2009 was another success raising $363 and change! The owners of Mr. Petes have expressed there support offering us another day to hold a fundraiser! And this time, every car wash purchased also is given a coupon for a free burger!! I can't wait to start planning that car wash and many more fundraisers! Bella Mia's condition and her daily fight with SMA has been an inspiration to many and together with the help of my family, friends, and communty, we will change the course of SMA history even if its in the smallest of ways.
Nothing in my life has ever made me more humbled or proud as my fight agaist SMA and the overwhelming support it has recieved. I had initially asked for monetary support to save our home and cars and unfortunetly we already lost our home but on the bright side saved our cars. And now that my needs for Bella's comfort are being met by my dad (thank GOD for him) Im ready to give as much of my raised money, time, and heart as I can. Its time for me to answer the phone that has been ringing. My purpose is calling. Is my purpose saving my daughters life? Fighting for her life? Raising awareness for her condition? Going to medical school? As a matter of fact its all of it.
My dad was talking to me last night about the Power of Intent. He expressed how my perserverance has astonished him and to see me get up every morning and continue searching, and talking, and fighting for SMA and Bella has shown him exactly who I am and he has never been so proud. Do you know what that means to me?? My dad NEVER talks like that. He told me to make this my ultimate goal. To visualize my expected outcome and expect nothing less. He belives that so long as I keep pushing, keep believing, keep praying, and keep searching any outcome that I want WILL be achieved. NO ONE to this day has told me that. No one has shown more heart or faith in me than my dad. No one except my daughter. I intend on saving Bella Mia's life. I intend on going the distance and walking the road wherever it may lead me. I intend on waking up every morning revitalized and hopeful regardless of the crap and hurdles I face. And I intend on making this happen alone if I must. Because Bella Mia is my daughter, my saving grace, my purpose and she deserves this.
To all you skeptics who look at this as a joke, as a sure failure, I say take your pessimistic ora as far away from my life as possible. I DONT NEED YOU bringing black holes into my fight for my daughter. I don't need your judgement, comments, or advice. I was raised to get up off the ground when I fall and to keep going. To never let any single person or group tell me what I can and cannot do. I have had many MANY MANY opportunities to dig my own grave and rot but I have crawln out of the pits of hell many times. When every odd was agaist me, I came out alive and successful. If there was something I could do, I did it. And this is just another mountain I am going to move.
If you are going to fight along our side its going to require working side by side with me, faith in God, and an optomist soul. Its time to make a difference. We are going to save Bella and nothing else should matter or get in the way of that.
Many of you have the ability to do more than others and thats great. But if you can't hold fundraisers, car washes, or yard sales in Bellas name a prayer every night holds the same value. I expect nothing from anyone except their commitment to fight along side with Bella.
God Bless every fighters fight. God Bless every prayers' prayer.
Bren
The car wash on Sunday August 23, 2009 was another success raising $363 and change! The owners of Mr. Petes have expressed there support offering us another day to hold a fundraiser! And this time, every car wash purchased also is given a coupon for a free burger!! I can't wait to start planning that car wash and many more fundraisers! Bella Mia's condition and her daily fight with SMA has been an inspiration to many and together with the help of my family, friends, and communty, we will change the course of SMA history even if its in the smallest of ways.
Nothing in my life has ever made me more humbled or proud as my fight agaist SMA and the overwhelming support it has recieved. I had initially asked for monetary support to save our home and cars and unfortunetly we already lost our home but on the bright side saved our cars. And now that my needs for Bella's comfort are being met by my dad (thank GOD for him) Im ready to give as much of my raised money, time, and heart as I can. Its time for me to answer the phone that has been ringing. My purpose is calling. Is my purpose saving my daughters life? Fighting for her life? Raising awareness for her condition? Going to medical school? As a matter of fact its all of it.
My dad was talking to me last night about the Power of Intent. He expressed how my perserverance has astonished him and to see me get up every morning and continue searching, and talking, and fighting for SMA and Bella has shown him exactly who I am and he has never been so proud. Do you know what that means to me?? My dad NEVER talks like that. He told me to make this my ultimate goal. To visualize my expected outcome and expect nothing less. He belives that so long as I keep pushing, keep believing, keep praying, and keep searching any outcome that I want WILL be achieved. NO ONE to this day has told me that. No one has shown more heart or faith in me than my dad. No one except my daughter. I intend on saving Bella Mia's life. I intend on going the distance and walking the road wherever it may lead me. I intend on waking up every morning revitalized and hopeful regardless of the crap and hurdles I face. And I intend on making this happen alone if I must. Because Bella Mia is my daughter, my saving grace, my purpose and she deserves this.
To all you skeptics who look at this as a joke, as a sure failure, I say take your pessimistic ora as far away from my life as possible. I DONT NEED YOU bringing black holes into my fight for my daughter. I don't need your judgement, comments, or advice. I was raised to get up off the ground when I fall and to keep going. To never let any single person or group tell me what I can and cannot do. I have had many MANY MANY opportunities to dig my own grave and rot but I have crawln out of the pits of hell many times. When every odd was agaist me, I came out alive and successful. If there was something I could do, I did it. And this is just another mountain I am going to move.
If you are going to fight along our side its going to require working side by side with me, faith in God, and an optomist soul. Its time to make a difference. We are going to save Bella and nothing else should matter or get in the way of that.
Many of you have the ability to do more than others and thats great. But if you can't hold fundraisers, car washes, or yard sales in Bellas name a prayer every night holds the same value. I expect nothing from anyone except their commitment to fight along side with Bella.
God Bless every fighters fight. God Bless every prayers' prayer.
Bren
Saturday, August 22, 2009
Made the move
Bella and I have made the move to Downey to live with my Dad. I dont wish to go into the details about what happened but what I will say is Frenchie from Grease was right all along, "The only man a girl can depend on is her daddy."
The first thing we unpacked when I got to my dads was Bellas playpen because my poor baby was out and about so late at night when shes used to being in bed by 8pm. She finally got to lay down and fall asleep at 11pm and I must say it looked soooo comfortable!! We finished unpacking the cars around midnight and then my brother Jake and I began organizing all my belongings into the livingroom. I felt so bad that Bella was sleeping in the same room that we were moving around but she didn't even seem to notice. We finished settling in at 3am! And the best part was that I finally got to shower for the first time in 2 almost 3 days!!
Bella did not wake up even once last night! She slept until 10:30am giving me the most sleep Ive had in weeks! It seems to me that her playpen mattress is too stiff for her little body so what I did was place a pillow down with her sheepskin blanket over it. Then I covered it all with a soft blanket and it looked like a little cloud had been placed in her playpen for her comfort :) Maybe this is what had been keeping her up all those other restless nights. She had been uncomfortable sleeping on a hard matress.
Now that we are home at my Dads we are both well rested and both less stressed we woke up happy and ready to have fun! I gave her a nice long bath and even put her little bath toys in her tub for her. I dressed her in the most adorable yellow dress with pink flowers and took her outside with a blanket to play. Over the last 4-5 days I have been really working with Bella to teach her how to roll over. She has been understanding what I want her to do and really trying which overjoys me! Finally today for the first time SHE DID IT!!! She was on her side playing her Lily Counting doll and she looks over her shoulder at the rattle hanging over her, decides she would rather play with that, and boom she rolled over to her back and began reaching for her rattle!!!!!!!!!!!! SUCH AN ACCOMPLISHMENT!!!!
All her doctors said she would probably never learn to graps toys, to straigten her wrist, to hold her head up, or to roll over but you know what I said....SCREW YOU!! SHE WILL AND YOU'LL SEE!! I practiced with her everyday, pushed her, encouraged her, and rewarded her and it paid off. She can straighten her wrists (the right more than left but we're getting there!!) She can grasp her toys. She can hold her head up when support her for 10-15 min. And now she's learning to roll over! My Beauty Queen has beat so many odds and still fighting more! So many people take the slightest things for granted and me...I appreciate them all because with my Beauty, I see just how precious they really are.
Her little infection is still present so know that I switched her pharmacy to one here in Downey my dad went to pick it up and Bella has started it. They took her off Cephalexin and started her Bactrim. Its only twice a day and hopefully this works :)
Also, my Sister Stephanie stopped by to see her lil Princess and it made Bellas day!! They played, hugged, and took pictures and for me it was especially nice for me because I did miss my sister sooo much!! Tonight we are going to celebrate here at my dads and we'll be cooking up a storm and even my dads favorite Upside-down Pineapple cake! CAN'T WAIT!!
Other than all this drama, I have sooo much to update you guys on with regards to the stem cell therapies and the FDA. I dont have time right now to type it allll out but maybe tonight when my Beaty Queen goes to sleep!
Dont forget guys tomorrow is the car wash here in Downey at Mr. Pete's to help raise money for SMA clinical trials! COME OUT AND SHOW YOUR SUPPORT!!!!
God Bless,
Bren
The first thing we unpacked when I got to my dads was Bellas playpen because my poor baby was out and about so late at night when shes used to being in bed by 8pm. She finally got to lay down and fall asleep at 11pm and I must say it looked soooo comfortable!! We finished unpacking the cars around midnight and then my brother Jake and I began organizing all my belongings into the livingroom. I felt so bad that Bella was sleeping in the same room that we were moving around but she didn't even seem to notice. We finished settling in at 3am! And the best part was that I finally got to shower for the first time in 2 almost 3 days!!
Bella did not wake up even once last night! She slept until 10:30am giving me the most sleep Ive had in weeks! It seems to me that her playpen mattress is too stiff for her little body so what I did was place a pillow down with her sheepskin blanket over it. Then I covered it all with a soft blanket and it looked like a little cloud had been placed in her playpen for her comfort :) Maybe this is what had been keeping her up all those other restless nights. She had been uncomfortable sleeping on a hard matress.
Now that we are home at my Dads we are both well rested and both less stressed we woke up happy and ready to have fun! I gave her a nice long bath and even put her little bath toys in her tub for her. I dressed her in the most adorable yellow dress with pink flowers and took her outside with a blanket to play. Over the last 4-5 days I have been really working with Bella to teach her how to roll over. She has been understanding what I want her to do and really trying which overjoys me! Finally today for the first time SHE DID IT!!! She was on her side playing her Lily Counting doll and she looks over her shoulder at the rattle hanging over her, decides she would rather play with that, and boom she rolled over to her back and began reaching for her rattle!!!!!!!!!!!! SUCH AN ACCOMPLISHMENT!!!!
All her doctors said she would probably never learn to graps toys, to straigten her wrist, to hold her head up, or to roll over but you know what I said....SCREW YOU!! SHE WILL AND YOU'LL SEE!! I practiced with her everyday, pushed her, encouraged her, and rewarded her and it paid off. She can straighten her wrists (the right more than left but we're getting there!!) She can grasp her toys. She can hold her head up when support her for 10-15 min. And now she's learning to roll over! My Beauty Queen has beat so many odds and still fighting more! So many people take the slightest things for granted and me...I appreciate them all because with my Beauty, I see just how precious they really are.
Her little infection is still present so know that I switched her pharmacy to one here in Downey my dad went to pick it up and Bella has started it. They took her off Cephalexin and started her Bactrim. Its only twice a day and hopefully this works :)
Also, my Sister Stephanie stopped by to see her lil Princess and it made Bellas day!! They played, hugged, and took pictures and for me it was especially nice for me because I did miss my sister sooo much!! Tonight we are going to celebrate here at my dads and we'll be cooking up a storm and even my dads favorite Upside-down Pineapple cake! CAN'T WAIT!!
Other than all this drama, I have sooo much to update you guys on with regards to the stem cell therapies and the FDA. I dont have time right now to type it allll out but maybe tonight when my Beaty Queen goes to sleep!
Dont forget guys tomorrow is the car wash here in Downey at Mr. Pete's to help raise money for SMA clinical trials! COME OUT AND SHOW YOUR SUPPORT!!!!
God Bless,
Bren
Subscribe to:
Posts (Atom)