I want to share with you some amazing things happening lately:
Thank you to all of you who voted in the Pepsi Refresh contest for Sophia's Cure - we finally made it to first place and got $250,000 worth of funding towards SMA research!!! Simply AMAZING! With many clicks on a simple "vote" button, we were able to raise a quarter of a million dollars... something that would've taken many fundraisers and lots more effort and time, so THANK YOU!
Some other awesome news in the SMA world.... I finally have enough people on board to start a Families of SMA chapter here in Georgia!!! AMAZING! I've been trying to start one for months now, but it's been hard to find enough people who want to take on the responsibility and I don't have the time to devote to being President, or I totally would (plus you need at least three other officers to start and run the chapter). We're having our first "get-to-know-you" meeting in a few days and I am really excited to meet a handful of people who share the same vision as I do... It's crazy to think we have so many resources here (Children's Healthcare of Atlanta as well as many other great medical offices) and no chapter to help newly diagnosed families. I am really looking forward to being able to help future families and hopefully provide a resource and a place to turn when their world comes crashing down like ours did...
More SMA stuff: I just finished designing a poster for the Hope and Light Foundation here in Atlanta (a foundation dedicated to raising money for SMA research) for an upcoming fundraiser. If you are wanting a night out on the town and you live in Atlanta, consider going to one of the participating restaurants in the Virginia Highlands for dinner Monday, August 9th from 6-10pm. Restaurants include Everybody's Pizza (VA High. location only), Atkins Park Tavern, George's Bar & Restaurant, Fontaine's Oyster House, Highland Tap, and Skips' (in Avondale Estates)... Ten percent of your bill will go back to the H&L Foundation.
In other news, Skylar had an appointment with the GI doctor to go over her upper GI results and to discuss long term plans. We found out that the reason her belly is so small is that because they had to use a lot of it in order to do the fundoplication procedure. I didn't even think about how much they used to wrap her stomach around her esophagus and stitch it... so it makes sense that her tummy would be extremely small, but we still never would've guessed it could only hold an ounce at a time. Since my last post, her feedings have been going much better. The continuous during the day have helped relieve a lot of stress - Skylar's average heart rate has gone down some since the switch and she just seems more comfortable. Overall, the GI doc was really pleased and said to keep doing what we're doing.
We had an appointment to get her ankle splints - they messed up scheduling us and then the person who did the splints didn't make them correctly so we're going back this week to get them re-done. The good news is that they've been super great about working with us to squeeze us in and make-up for their mistakes. Our physical therapist is going to write out a detailed explanation for me to give to them so hopefully they'll be done correctly this time :) Skylar's feet are really starting to curl in and her legs aren't growing straight. Her knees are angled in so that if she tried to stand, she would be bow-legged. We're just going to focus on her ankles/feet and wrists right now since that is what she is able to move, but may need some wisdom with proceeding any further with her legs and body alignment.
Skylar's been off and on with good days and bad... Some days she struggles and other days she's fine and happy. There's no rhyme or reason to it (at least that we can figure out) and so we're doing what we always do... just taking it a day at a time and thanking God for every day we have together as a family.
I have to share one more thing... Sorry this is a long one! I have been supporting a boy in India for at least 5 years now, maybe more. He calls me "Aunt" and it's just been a really neat relationship and a blessing. We exchange letters and I will send him extra money for holidays and his birthday and it's really fun to hear how he and his family was able to use it. One time he wrote me back so excited because they were able to get a chair - they had never had a chair in their home before. Stuff like that always amazes me and makes me stop and think... and be thankful for what we have... and sometimes wish life were more simple. Anyway, back to the point :) I wrote him a letter explaining what we were going through with Skylar and I got this letter last week:
"I received your letter. I became so sad to read your letter. I and my family members are praying for my younger sister Skylar. Surely God will cure my sister Skylar. In my project every second Saturday a prayer meeting is arranged. All children and staff together prayed for my sister Skylar. I hope that surely God will cure my sister. Nothing is impossible for God. We are continously praying for Skylar Aunt. Don't Worry. Our Almighty God will comfort you."
How amazing is that!? He's in the 11th grade now... if you want to pray for him, his name is Jerin. His letter also informed me that it is the rainy season and many communicable diseases are spreading so he asked for specific prayer for protection and health.
We're continually amazed with the people God has placed in our lives and want to thank everyone for your generosity, prayer, support and love for us. I'll try to post again soon so it's not so long :) Thanks for reading. Peace.
Sunday, August 1, 2010
Saturday, July 17, 2010
Updates...
So after a very rough last week, I made several phone calls Friday to the doctors to let them know what was going on... We had an upper GI scheduled for Monday where they put barium in her belly and follow it to make sure everything is still in place. We had been giving her bolus feeds (about 3.5 ounces at a time) and it just seemed like she started having problems overnight after every feed so we were afraid that her fundoplication had come undone or something else was seriously wrong...
The good news is that everything is still in place and her belly seems to be functioning fine. However, they were very surprised to see that her belly looked almost completely full after one ounce. Usually, an 8 month old can handle 6-8 ounces at a time by this point, so we were thinking 3.5 or even 3 ounces would be just fine. We had no idea SMA affected the belly like that. We still don't have answers why her belly can only hold that much, why it's not growing, etc. but the good news is that we've switched to continuous feeds (where we just give her a little bit at a time through the entire day with the feeding pump - an ounce an hour) and Skylar's been much better!
She still has moments of struggle during the day, but nothing compared to last week... I seriously thought it might be the end. Thankfully, I was wrong :) The only bad thing about continuous feeds is that the feeding pump on the IV pole with her feeding bag is just one more thing attached to her all day. It's so much harder to move around the house now because now I have to deal with the feeding set up and the pulse ox machine (also attached to her 24/7) and suction machine (which just goes everywhere with us). We're constantly adapting.
We've had a good week so far. Kyle's birthday is this Sunday (tomorrow) so we're going to try to hang out as a family and enjoy the day. Skylar will be 8 months on Monday :) so there's a lot going on! Next weekend, I am going to be in a wedding in Valdosta and it will be my first full day and overnight away from Skylar... That will be tough, but I am so thankful to get to be a part of my friend's wedding. She has Cystic Fibrosis (CF), which is also a genetic disease, and is fighting hard and doing well - a true testimony to beating the odds! She's been a great encouragement to us as well as an amazing example how to live life.
During the coming week, we have an appointment to get Skylar some new wrist splints since she's outgrown her old ones... We'll have to go again the following week to get the ones for her feet/ankles made. Hopefully, these doctor visits won't be as stressful because she shouldn't have to get undressed or poked or weighed...
We're gaining momentum on facebook with the number of fans we have! The Clemson Alumni have really stepped up in supporting us as well as some KD Alumnae... Thanks! I don't know if we'll hear anything or when we'll know if they have or have not chosen us, but I'll certainly keep everyone posted as I find stuff out. We really do feel extremely loved by all of our friends and family and couldn't ask for better people to be surrounded by during this time whether we get the makeover or not. Thanks so much!!!
Other updates: I still have to follow up with the nursing company about whether we can get that or not. We are in the appeal process for medicaid after being denied the first time (which we expected) and have applied for the Katie Beckett waiver. It's a painfully long and tedious process that should be against the law in situations like ours where time is of the essence. I swear they do everything they can to draw it out as long as possible and make it as hard as possible so that people give up. I won't get started...
We haven't gotten a van yet - we have a lot of shopping to do and we want to make sure we can find a decent one used so that we don't use all of our money on the van. We have a lot of other expenses and bills so we want to use our money wisely, but we're still excited about getting one and hopefully it won't be too much longer! A leader at our church as been a big help with helping in the hunt for one.
Oh! I can't believe I almost forgot to tell you this... Skylar laughed during a movie for the very first time Thursday!!! We were watching Monsters, Inc. and all of a sudden, she just giggled. I looked right over at her and she was just staring at the movie smiling. It was awesome! I laughed at the fact that she laughed at the movie, and we both started laughing again. She's such a cutie!
Anyway, that's about it for now. Hope everyone is having a great weekend! Peace.
The good news is that everything is still in place and her belly seems to be functioning fine. However, they were very surprised to see that her belly looked almost completely full after one ounce. Usually, an 8 month old can handle 6-8 ounces at a time by this point, so we were thinking 3.5 or even 3 ounces would be just fine. We had no idea SMA affected the belly like that. We still don't have answers why her belly can only hold that much, why it's not growing, etc. but the good news is that we've switched to continuous feeds (where we just give her a little bit at a time through the entire day with the feeding pump - an ounce an hour) and Skylar's been much better!
She still has moments of struggle during the day, but nothing compared to last week... I seriously thought it might be the end. Thankfully, I was wrong :) The only bad thing about continuous feeds is that the feeding pump on the IV pole with her feeding bag is just one more thing attached to her all day. It's so much harder to move around the house now because now I have to deal with the feeding set up and the pulse ox machine (also attached to her 24/7) and suction machine (which just goes everywhere with us). We're constantly adapting.
We've had a good week so far. Kyle's birthday is this Sunday (tomorrow) so we're going to try to hang out as a family and enjoy the day. Skylar will be 8 months on Monday :) so there's a lot going on! Next weekend, I am going to be in a wedding in Valdosta and it will be my first full day and overnight away from Skylar... That will be tough, but I am so thankful to get to be a part of my friend's wedding. She has Cystic Fibrosis (CF), which is also a genetic disease, and is fighting hard and doing well - a true testimony to beating the odds! She's been a great encouragement to us as well as an amazing example how to live life.
During the coming week, we have an appointment to get Skylar some new wrist splints since she's outgrown her old ones... We'll have to go again the following week to get the ones for her feet/ankles made. Hopefully, these doctor visits won't be as stressful because she shouldn't have to get undressed or poked or weighed...
We're gaining momentum on facebook with the number of fans we have! The Clemson Alumni have really stepped up in supporting us as well as some KD Alumnae... Thanks! I don't know if we'll hear anything or when we'll know if they have or have not chosen us, but I'll certainly keep everyone posted as I find stuff out. We really do feel extremely loved by all of our friends and family and couldn't ask for better people to be surrounded by during this time whether we get the makeover or not. Thanks so much!!!
Other updates: I still have to follow up with the nursing company about whether we can get that or not. We are in the appeal process for medicaid after being denied the first time (which we expected) and have applied for the Katie Beckett waiver. It's a painfully long and tedious process that should be against the law in situations like ours where time is of the essence. I swear they do everything they can to draw it out as long as possible and make it as hard as possible so that people give up. I won't get started...
We haven't gotten a van yet - we have a lot of shopping to do and we want to make sure we can find a decent one used so that we don't use all of our money on the van. We have a lot of other expenses and bills so we want to use our money wisely, but we're still excited about getting one and hopefully it won't be too much longer! A leader at our church as been a big help with helping in the hunt for one.
Oh! I can't believe I almost forgot to tell you this... Skylar laughed during a movie for the very first time Thursday!!! We were watching Monsters, Inc. and all of a sudden, she just giggled. I looked right over at her and she was just staring at the movie smiling. It was awesome! I laughed at the fact that she laughed at the movie, and we both started laughing again. She's such a cutie!
Anyway, that's about it for now. Hope everyone is having a great weekend! Peace.
Thursday, July 8, 2010
My Plate Is Full
So there's a ton of stuff going on with the preparation to make sure Extreme Makeover Home Edition has everything they need to choose us (mainly a video to introduce our family and our house). We've been filming all week, then realized we were filming everything but the requirements, lol... Something that would've been good to look at before starting! So we're almost done and will send that in hopefully the beginning of the week. If you're on facebook, please "like" our fan page and share it with your friends so that we can show them we have support and people to come out and help :)
This past week has been great because we've had family in town that we haven't seen in a long time! They hadn't met Skylar before so it was really fun to have them hang out and stay a while. Kyle and I got out on July 4th for the first date in months and months. We put her on bi-pap early and left her with Kyle's parents, aunts, grama, and cousins - I think between all of them, they could handle entertaining her :) We have some more family in this week, but Skylar's been struggling some, so I feel bad that we haven't been the best hosts...
This past week has also been really really rough emotionally for me. After adjusting her feeds, Skylar had a great weekend! We thought the problem was solved and everything was good. She seemed happy... Tuesday we had a lot of company in the house and it might have just overwhelmed Skylar, but that was the first day of her struggles this week. Wednesday was even worse - the physical therapist from Babies Can't Wait came out (a state funded program that provides in-home therapy and other things to babies in need) and showed me some new things. She's only coming twice a month, which I thought was lame at first that they wouldn't come more to help me, but after Skylar's reaction, I'm kind of glad. Skylar dropped into the 70's twice while the lady was working on her. I feel like I need to say this woman is super nice - I really enjoy her teaching me things to help Skylar, and she's got a great personality. However, I don't know if Skylar is just really sensitive about other people touching her or if she's really in pain from this woman moving her around, or maybe both, but it was a hard day. Once the physical therapist left, she never really recovered. It was a battle all day.
I haven't been able to give her a bath all week because she's not stable enough to put her in the tub and I don't trust taking her pulse ox machine off. It sucks. I am so tired of this. I am not mad at Skylar of course, and I'm not mad at God, I am just upset at the whole situation. I am mad at this disease. I am angry that it is slowly taking the life away from my daughter. I am tired of the freaking pulse ox alarm not stopping no matter how persistent I am at suctioning, I am tired of the dang mucous that builds up over and over, and I am so sick of seeing my daughter fight for her life. I will continue doing every thing I can to help her until it comes to the point of needing life support, and I certainly don't wish for that time to come any time soon. But I just hate the whole thing. Yesterday evening, if Skylar hadn't been in the house with me, I would've screamed at the top of my lungs, thrown something across the room, and probably broken a few things and made some dents in the wall and then collapsed on the floor sobbing. That is where my heart is right now because I am so exhausted in every sense of the word and so sad for Skylar, for our family, for what we have to endure. Thankfully, Skylar was in the room so I held it in, not to scare her and I am sure our landlord is thankful too :)
Anyway, I had a good cry last night and one this afternoon when Skylar was struggling again. I keep noticing that it is after her feeds still so we're going to call the GI doc tomorrow and ask if he can take a look at her to see if her fundoplication is still in place and if we need to switch to more continuous feeds. I am also going to let our pulmonologist know what's going on to see if there's something we're not thinking of that she can help with. It's so frustrating not knowing what is causing this and not knowing how to make it better. My biggest fear is that there won't be anything and this is just the beginning of the end. I try with my whole heart not to think that way and certainly don't want it to be true, so that is all I am going to say of it. We could use your prayers for Skylar's happiness and ability to breathe - wisdom for her doctors and for us - and for my strength (Kyle's too) but emotionally for me dealing with it all day.
I'll write more soon - I have had a great week in the sense that I have been able to get to our church's Vacation Bible School this week and take pictures for them :) it's been great and the kids are all adorable and fun. It's been such a blessing and much needed time out of the house and behind a camera again. I miss it, but am so thankful for the time I have with Skylar so I'm not too worried about it - I'll have my chance again some day. I have also been helping Haven Womens Ministry with some design projects for an upcoming golf tournament event. The Hope and Light Foundation (a local SMA charity that has helped us with resources) is having a fund raising event coming up as well and I am working on a poster for them too. My plate is full. A dear friend from church has been coming to give me shoulder and back massages because I've been having problems with pain lately (too much bending and lifting maybe?). I also got my stitches taken out this morning (the third or fourth round of pre-cancerous moles) since Skylar's been born). Lots going on! Wanted to update you because it would be a novel if I waited any longer... Okay, gotta run! Peace.
This past week has been great because we've had family in town that we haven't seen in a long time! They hadn't met Skylar before so it was really fun to have them hang out and stay a while. Kyle and I got out on July 4th for the first date in months and months. We put her on bi-pap early and left her with Kyle's parents, aunts, grama, and cousins - I think between all of them, they could handle entertaining her :) We have some more family in this week, but Skylar's been struggling some, so I feel bad that we haven't been the best hosts...
This past week has also been really really rough emotionally for me. After adjusting her feeds, Skylar had a great weekend! We thought the problem was solved and everything was good. She seemed happy... Tuesday we had a lot of company in the house and it might have just overwhelmed Skylar, but that was the first day of her struggles this week. Wednesday was even worse - the physical therapist from Babies Can't Wait came out (a state funded program that provides in-home therapy and other things to babies in need) and showed me some new things. She's only coming twice a month, which I thought was lame at first that they wouldn't come more to help me, but after Skylar's reaction, I'm kind of glad. Skylar dropped into the 70's twice while the lady was working on her. I feel like I need to say this woman is super nice - I really enjoy her teaching me things to help Skylar, and she's got a great personality. However, I don't know if Skylar is just really sensitive about other people touching her or if she's really in pain from this woman moving her around, or maybe both, but it was a hard day. Once the physical therapist left, she never really recovered. It was a battle all day.
I haven't been able to give her a bath all week because she's not stable enough to put her in the tub and I don't trust taking her pulse ox machine off. It sucks. I am so tired of this. I am not mad at Skylar of course, and I'm not mad at God, I am just upset at the whole situation. I am mad at this disease. I am angry that it is slowly taking the life away from my daughter. I am tired of the freaking pulse ox alarm not stopping no matter how persistent I am at suctioning, I am tired of the dang mucous that builds up over and over, and I am so sick of seeing my daughter fight for her life. I will continue doing every thing I can to help her until it comes to the point of needing life support, and I certainly don't wish for that time to come any time soon. But I just hate the whole thing. Yesterday evening, if Skylar hadn't been in the house with me, I would've screamed at the top of my lungs, thrown something across the room, and probably broken a few things and made some dents in the wall and then collapsed on the floor sobbing. That is where my heart is right now because I am so exhausted in every sense of the word and so sad for Skylar, for our family, for what we have to endure. Thankfully, Skylar was in the room so I held it in, not to scare her and I am sure our landlord is thankful too :)
Anyway, I had a good cry last night and one this afternoon when Skylar was struggling again. I keep noticing that it is after her feeds still so we're going to call the GI doc tomorrow and ask if he can take a look at her to see if her fundoplication is still in place and if we need to switch to more continuous feeds. I am also going to let our pulmonologist know what's going on to see if there's something we're not thinking of that she can help with. It's so frustrating not knowing what is causing this and not knowing how to make it better. My biggest fear is that there won't be anything and this is just the beginning of the end. I try with my whole heart not to think that way and certainly don't want it to be true, so that is all I am going to say of it. We could use your prayers for Skylar's happiness and ability to breathe - wisdom for her doctors and for us - and for my strength (Kyle's too) but emotionally for me dealing with it all day.
I'll write more soon - I have had a great week in the sense that I have been able to get to our church's Vacation Bible School this week and take pictures for them :) it's been great and the kids are all adorable and fun. It's been such a blessing and much needed time out of the house and behind a camera again. I miss it, but am so thankful for the time I have with Skylar so I'm not too worried about it - I'll have my chance again some day. I have also been helping Haven Womens Ministry with some design projects for an upcoming golf tournament event. The Hope and Light Foundation (a local SMA charity that has helped us with resources) is having a fund raising event coming up as well and I am working on a poster for them too. My plate is full. A dear friend from church has been coming to give me shoulder and back massages because I've been having problems with pain lately (too much bending and lifting maybe?). I also got my stitches taken out this morning (the third or fourth round of pre-cancerous moles) since Skylar's been born). Lots going on! Wanted to update you because it would be a novel if I waited any longer... Okay, gotta run! Peace.
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