I popped over to Ollie's Tale today and noticed it had been 3 weeks since we'd last posted anything and thought I'd make a little update and let you know how Bekka and I are doing. My standard response when people ask is "Good days, bad days but more good than bad."
It sounds a bit non-committal but it's really how it is. Days go by where you only think about the little guy a bit (and those are more and more often the good memories) and other days when the entire last year hits with the full weight of every event in every excruciating detail. Most days fall somewhere in between those extremes.
All in all, Bekka and I are doing pretty well. I'm (mostly) back to work full time and Bekka is still working part time at Stride Rite. We are putting our lives back together and enjoying our time with each other. In some ways Bekka and I are getting to know ourselves and our relationship again and that's been wonderful. The trauma we experienced with Ollie could have torn us apart but instead it's made our bond stronger and deeper.
Yes we wish we still had our little man to hold and pat and squeeze. We love him and we miss him, but when we think back to the torture we had to put him through every 2 to 3 hours that last month - we are glad he is in a more peaceful place. Never forget that SMA is a perverse and labor intensive disease for the caretaker and the child. Get tested so we can stop it.
Thursday, October 22, 2009
Thursday, October 1, 2009
SMA Featured on CBS' The Early Show
CBS' The Early Show segment, In Your Genes, this morning featured a family affected by SMA. The couple lost their second child, a daughter, to SMA when she was just three weeks old. When they decided to try to have another child, they chose to undergo in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD).
I have contacted our local CBS affiliate regarding our story. My hope is that we can increase awareness of SMA and carrier testing as well.
Cross your fingers!
I have contacted our local CBS affiliate regarding our story. My hope is that we can increase awareness of SMA and carrier testing as well.
Cross your fingers!
Monday, September 21, 2009
7 Weeks Later
Wow. This is post 100 of our journey with SMA. We didn't ask for the trip, but we'll be on it the rest of our lives and I want to thank so many of you for making it with us.
It's hard to believe that so little real time has passed. In so many ways we lived years of time compressed into those few, intense months. Months of love and anger, joy and sadness and more than a little helplessness thrown in.
Something that struck me today was the relative normality of that last Sunday before our little guy passed on. Amanda hit on that in a post on her blog today. Ollie had a bit of rough spot that afternoon - in fact, we'd had to give him morphine at one point because he would not calm down.
After a nap and some very successful suctioning, he had a fantastic evening. He patiently watched "Lost" (as Amanda rubbed his back) and was a chatty little fella the rest of the night, never really seeming distressed and he stayed up until late in the morning with his night owl of a mommy.
I still maintain that was his last gift to his mom and dad. He was saying "It's going to be OK. I'm sorry to be leaving so soon, but please don't worry and thanks for being great parents while I was here. I love you guys!"
Perhaps that's reading rather a lot into it, but that's just the way Ollie was. He always seemed to know how to make us feel better. A wink, a smile, a little chuckle just when things seemed dark. He taught us about unconditional love.
Bekka and I had wanted a child for so long. Life threw us a curve ball with a beautiful, but flawed angel. It wasn't (still isn't) an easy time.
Was it all worth it?
Hell yes.
It's hard to believe that so little real time has passed. In so many ways we lived years of time compressed into those few, intense months. Months of love and anger, joy and sadness and more than a little helplessness thrown in.
Something that struck me today was the relative normality of that last Sunday before our little guy passed on. Amanda hit on that in a post on her blog today. Ollie had a bit of rough spot that afternoon - in fact, we'd had to give him morphine at one point because he would not calm down.
After a nap and some very successful suctioning, he had a fantastic evening. He patiently watched "Lost" (as Amanda rubbed his back) and was a chatty little fella the rest of the night, never really seeming distressed and he stayed up until late in the morning with his night owl of a mommy.
I still maintain that was his last gift to his mom and dad. He was saying "It's going to be OK. I'm sorry to be leaving so soon, but please don't worry and thanks for being great parents while I was here. I love you guys!"
Perhaps that's reading rather a lot into it, but that's just the way Ollie was. He always seemed to know how to make us feel better. A wink, a smile, a little chuckle just when things seemed dark. He taught us about unconditional love.
Bekka and I had wanted a child for so long. Life threw us a curve ball with a beautiful, but flawed angel. It wasn't (still isn't) an easy time.
Was it all worth it?
Hell yes.
Thursday, September 17, 2009
Bekka's Interview on the 2009 MDA Telethon in Raleigh
Hooray!
You can now see my (short) interview from the 2009 MDA Telethon.
(Thank you to Cathy, Rich and Neil for doing all the behind-the-scenes stuff necessary to post it online.)
You can now see my (short) interview from the 2009 MDA Telethon.
(Thank you to Cathy, Rich and Neil for doing all the behind-the-scenes stuff necessary to post it online.)
Thursday, September 10, 2009
Sen. Burr's Office Called....
...and he has co-sponsored S.1158, a.k.a. the SMA Treatment Acceleration Act!!!!!!
I'm soooo excited. I had contacted Sen. Burr, Sen. Hagan and Rep. Miller a while ago asking them to co-sponsor the bill (S.1158 and HR.2149). I got a generic email acknowledgment from Rep. Miller; no response from Sen. Hagan; and a nice, personalized letter in the mail from Sen. Burr.
And today one of Sen. Burr's aides, Anna, called to "close the loop" and let me know that Sen. Burr has co-sponsored the bill!
In North Carolina, only two Representatives have signed on (Rep. Mike McIntyre and Rep. Walter Jones, Jr.), so please do your part. Call the Capitol Hill Switchboard at 202-224-3121 and ask to speak with Sen. Hagan's or your Representative's office.
Your phone call can make a difference!
I'm soooo excited. I had contacted Sen. Burr, Sen. Hagan and Rep. Miller a while ago asking them to co-sponsor the bill (S.1158 and HR.2149). I got a generic email acknowledgment from Rep. Miller; no response from Sen. Hagan; and a nice, personalized letter in the mail from Sen. Burr.
And today one of Sen. Burr's aides, Anna, called to "close the loop" and let me know that Sen. Burr has co-sponsored the bill!
In North Carolina, only two Representatives have signed on (Rep. Mike McIntyre and Rep. Walter Jones, Jr.), so please do your part. Call the Capitol Hill Switchboard at 202-224-3121 and ask to speak with Sen. Hagan's or your Representative's office.
Your phone call can make a difference!
Monday, September 7, 2009
5 weeks later and the world keeps on spinning...
Today has been five weeks since we lost Ollie. I've struggled to find the words to describe life without my beautiful baby boy. The house is eerily quiet. No cartoons on the television. No beeps from his feed pump or pulse ox. And no sweet little boy talking on the phone to his Grandma or his Nana.
When I was pregnant with Oliver, and even after his birth, questions like "how far along are you?" and "how old is your baby?" received responses like "29 weeks" or "12 and a half weeks." And now that Ollie is gone, I find myself once again counting the passage of time in weeks. It seems so odd for the clock to have reset itself.
Since Ollie's death I've had a couple of opportunities to speak publicly about SMA. I blogged recently about my radio interview for Broadcasting Hope. Today, I was able to speak about Ollie and SMA during the local MDA telethon. It was a brief, live interview. I was able to mention SMA and Ollie's short time on this earth. I hope I made my little boy proud.
It is hard work to go on with your life after you lose your child. Often I make myself get out of bed, make myself take a shower, make myself go to the grocery store when all I really want to do is stay in bed. Distraction helps, but it can be a double-edged sword merely delaying the inevitable tears.
I have a difficult time focusing on one task and multi-tasking is nearly impossible. Neil said he thought it must be like having a massive case of ADHD (minus the hyperactivity). I'd have to concur. Our dear friend Amanda blogged recently of the See-Saw of emotions she has felt. I'd have to agree with her description, too.
Even though we may not want it to, the world does, indeed, keep on spinning.
Neil and I have both returned to work. To Neil's credit, however, he's actually working nearly full-time. And me? Well, I've worked about eight to ten hours a week for the past couple of weeks. Still, it's eight to ten hours out of the house.
On the whole, I'd have to say we're both doing reasonably well - as individuals and as a couple. We try to focus on the multitude of happy times - which can be quite bittersweet. We have our teary-eyed moments. And there will probably be more of them in our future. Thankfully, we've got a box of tissues on every smooth, flat surface in the house.
(Actually, some surfaces even have two boxes of tissues. There's a surface area to number of boxes of tissue ratio I've worked out. So far, though, there is no "app for that.")
While life is not "back to normal," we're making progress. Over the past year, I'd questioned what normal is. I think I've decided normal is what you make it.
And I'm making the best of it that I can.
When I was pregnant with Oliver, and even after his birth, questions like "how far along are you?" and "how old is your baby?" received responses like "29 weeks" or "12 and a half weeks." And now that Ollie is gone, I find myself once again counting the passage of time in weeks. It seems so odd for the clock to have reset itself.
Since Ollie's death I've had a couple of opportunities to speak publicly about SMA. I blogged recently about my radio interview for Broadcasting Hope. Today, I was able to speak about Ollie and SMA during the local MDA telethon. It was a brief, live interview. I was able to mention SMA and Ollie's short time on this earth. I hope I made my little boy proud.
It is hard work to go on with your life after you lose your child. Often I make myself get out of bed, make myself take a shower, make myself go to the grocery store when all I really want to do is stay in bed. Distraction helps, but it can be a double-edged sword merely delaying the inevitable tears.
I have a difficult time focusing on one task and multi-tasking is nearly impossible. Neil said he thought it must be like having a massive case of ADHD (minus the hyperactivity). I'd have to concur. Our dear friend Amanda blogged recently of the See-Saw of emotions she has felt. I'd have to agree with her description, too.
Even though we may not want it to, the world does, indeed, keep on spinning.
Neil and I have both returned to work. To Neil's credit, however, he's actually working nearly full-time. And me? Well, I've worked about eight to ten hours a week for the past couple of weeks. Still, it's eight to ten hours out of the house.
On the whole, I'd have to say we're both doing reasonably well - as individuals and as a couple. We try to focus on the multitude of happy times - which can be quite bittersweet. We have our teary-eyed moments. And there will probably be more of them in our future. Thankfully, we've got a box of tissues on every smooth, flat surface in the house.
(Actually, some surfaces even have two boxes of tissues. There's a surface area to number of boxes of tissue ratio I've worked out. So far, though, there is no "app for that.")
While life is not "back to normal," we're making progress. Over the past year, I'd questioned what normal is. I think I've decided normal is what you make it.
And I'm making the best of it that I can.
Five weeks and life is strange
Things have gotten better to be sure.
I think it's progress that I don't instantly get a tear in my eye or a lump in my throat every time I see one of the pictures of Ollie in the living room. What I do feel is a little sensation of falling - sort of what you get when you catch a bit of air driving over a small rise or first begin the long dive after cresting the hill of a roller coaster.
Usually, it's just that little bit of sensation. Usually.
Sometimes it's the beginning of a no-holds-barred emotional thrill ride and you pray to God that the brakes on the coaster/train/car are working. If they aren't, sometimes you collide with a brick wall, sometimes it's a "soft" landing into a sand trap. Sand traps mean you might have to close the door to your office and sit quietly a few minutes, brick walls mean you probably need a lot of Kleenexes and a dark room.
But there are positives moments now.
More and more frequently, when I think of Ollie, I can think of good times and not be filled with a terrible regret that we aren't still creating new stories and new moments. I can enjoy the many beautiful memories for what they are - a precious little gift from a special little boy that reminds his daddy that there were indeed some very good times.
The beginning of football season has been hard. Last fall, our little man would sit quietly for HOURS in the crook of my arm watching those funny men run across that green field. He only made noise when the commercials came on - or someone changed the channel - smart boy, that one. That is one of the fondest memories I'll carry forward of Ollie and it really makes the fall a bittersweet time. Right now, he should be throwing that little mini-football (probably backwards over his head, of course).
Recently, someone who had also lost their son far too early described the feeling as having a stomachache that doesn't go away. I've thought about it and can come up with no more apt description of what we are going through. A mass is sitting in the core of your gut and it just sits there gnawing. You feel it lessening, but sometimes the best you can do is be distracted. (Thank you friends and family) At anytime, Bekka and I might be having a moment of quiet (or not so quiet) desperation.
A couple of weeks ago, the good memories were the hard memories. The bad memories, save for that final horrible night, have been in many ways easier to block out. Who wants to remember having to stick a plastic tube down their little boy's windpipe? Or hooking a tube up to his stomach to feed him every few hours, or using a machine to try and make him cough 8 times a day?
That's not what Ollie's life was about. Ollie's life was about loving every moment BETWEEN the painful events. He did this without fail, and now his mama and I are trying to do the same.
As we try to figure out job situations, medical bills, COBRA payments and all the other debris left over from a short but complicated life, we try to take a little time to love each other and each moment just a little bit more.
The challenge is that we now have many more free moments.
I think it's progress that I don't instantly get a tear in my eye or a lump in my throat every time I see one of the pictures of Ollie in the living room. What I do feel is a little sensation of falling - sort of what you get when you catch a bit of air driving over a small rise or first begin the long dive after cresting the hill of a roller coaster.
Usually, it's just that little bit of sensation. Usually.
Sometimes it's the beginning of a no-holds-barred emotional thrill ride and you pray to God that the brakes on the coaster/train/car are working. If they aren't, sometimes you collide with a brick wall, sometimes it's a "soft" landing into a sand trap. Sand traps mean you might have to close the door to your office and sit quietly a few minutes, brick walls mean you probably need a lot of Kleenexes and a dark room.
But there are positives moments now.
More and more frequently, when I think of Ollie, I can think of good times and not be filled with a terrible regret that we aren't still creating new stories and new moments. I can enjoy the many beautiful memories for what they are - a precious little gift from a special little boy that reminds his daddy that there were indeed some very good times.
The beginning of football season has been hard. Last fall, our little man would sit quietly for HOURS in the crook of my arm watching those funny men run across that green field. He only made noise when the commercials came on - or someone changed the channel - smart boy, that one. That is one of the fondest memories I'll carry forward of Ollie and it really makes the fall a bittersweet time. Right now, he should be throwing that little mini-football (probably backwards over his head, of course).
Recently, someone who had also lost their son far too early described the feeling as having a stomachache that doesn't go away. I've thought about it and can come up with no more apt description of what we are going through. A mass is sitting in the core of your gut and it just sits there gnawing. You feel it lessening, but sometimes the best you can do is be distracted. (Thank you friends and family) At anytime, Bekka and I might be having a moment of quiet (or not so quiet) desperation.
A couple of weeks ago, the good memories were the hard memories. The bad memories, save for that final horrible night, have been in many ways easier to block out. Who wants to remember having to stick a plastic tube down their little boy's windpipe? Or hooking a tube up to his stomach to feed him every few hours, or using a machine to try and make him cough 8 times a day?
That's not what Ollie's life was about. Ollie's life was about loving every moment BETWEEN the painful events. He did this without fail, and now his mama and I are trying to do the same.
As we try to figure out job situations, medical bills, COBRA payments and all the other debris left over from a short but complicated life, we try to take a little time to love each other and each moment just a little bit more.
The challenge is that we now have many more free moments.
MDA Telethon
The Jerry Lewis MDA Telethon is going on now! I'm headed out to the local station (CW22) in a bit to answer phones. So please call in and donate!
And remember: You can ask for your donation to be earmarked for SMA!
Thanks!
And remember: You can ask for your donation to be earmarked for SMA!
Thanks!
Wednesday, August 26, 2009
Radio Interview
After Oliver was diagnosed with SMA, we quickly learned about being his advocate. And we are still advocates. Tomorrow I have a big opportunity as an advocate.
A radio station in Goldsboro, NC, has chosen Spinal Muscular Atrophy as its focus for its Broadcasting Hope campaign. Each Thursday they have educated their listeners about SMA. Last Thursday, they interviewed two fathers. (Mark's son, John, has Type III. Jeremy's son, Logan, has Type I.)
Tomorrow, they will interview me.
I'm excited and nervous, sure, but mostly...I'm honored. Honored that I can share my experience. Honored that I can share my Ollie.
Hopefully, lots of listeners will hear about SMA, about carrier rates and testing, about the Treatment Acceleration Act, and about contacting their Senators and Representative. Maybe some of them will actually call the Capitol Hill Switchboard and speak with an aide in the office of their Congressman or Congresswoman. Perhaps another Legislator will be swayed to co-sponsor the bill. And, if we're really lucky, the bill will become law.
I wish I could give you all access to listen to the interview tomorrow at 7AM (Eastern). But I haven't found any streaming audio or webcast of the radio's morning show. If I can find a way to upload the interview on the blog, I promise I will.
A radio station in Goldsboro, NC, has chosen Spinal Muscular Atrophy as its focus for its Broadcasting Hope campaign. Each Thursday they have educated their listeners about SMA. Last Thursday, they interviewed two fathers. (Mark's son, John, has Type III. Jeremy's son, Logan, has Type I.)
Tomorrow, they will interview me.
I'm excited and nervous, sure, but mostly...I'm honored. Honored that I can share my experience. Honored that I can share my Ollie.
Hopefully, lots of listeners will hear about SMA, about carrier rates and testing, about the Treatment Acceleration Act, and about contacting their Senators and Representative. Maybe some of them will actually call the Capitol Hill Switchboard and speak with an aide in the office of their Congressman or Congresswoman. Perhaps another Legislator will be swayed to co-sponsor the bill. And, if we're really lucky, the bill will become law.
I wish I could give you all access to listen to the interview tomorrow at 7AM (Eastern). But I haven't found any streaming audio or webcast of the radio's morning show. If I can find a way to upload the interview on the blog, I promise I will.
Thursday, August 13, 2009
On Being Ollie's Daddy
Last week, on the night before Ollie's memorial, I couldn't sleep. I sat down with the laptop and began to put some thoughts on paper about what it was like being a dad and Ollie's dad in particular. Somehow, and I'm not really sure how, I made it through reading it at the service.
I had a lot of requests to post it and now almost a week later, I think I can do it. I hope you find it meaningful and that it sheds some light on our life with the little guy.
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I had a lot of requests to post it and now almost a week later, I think I can do it. I hope you find it meaningful and that it sheds some light on our life with the little guy.
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Thoughts on being Ollie’s Daddy – August 7, 2009
Becoming a father is an interesting study in contrasts. My experience is that most men treat impending fatherhood with a mix of genuine excitement and a touch of wariness. I know I fell into that category. The wariness comes from two sources: 1) You instinctively know you are about to bring a being into your house that you think will compete with you for your wife’s affection (and is way WAY cuter) and 2) You are massively worried about screwing up.
The thing is – the first time you hold that little ball of warmth in your arms – every single worry and concern you might have had is gone – left right there in the birthing room. Now you are focused only on how you are going to provide the best life possible for this child and his beautiful mother.
The worries about making a mess of everything will come back – but you’ll find quickly that somehow, you manage to step right up and take care of each problem (with a little help from mommy and those wise and sage grandparents that have been there before).
So everything in your life is humming right along and all is good. Baby is growing by leaps and bounds and nursing like a champ and is clearly the cutest thing going in six counties. People are calling and emailing and dropping by “just to check in”. At the preschool, he’s two months old, only been there a week and already the teachers are wrapped around his tiny little pinky. Everyone he meets falls in love as he learns how to wield that big toothless grin like a battle axe of happiness.
Then a Mack truck drives through your living room and takes your life away. You noticed your child wasn’t physically developing quite like he should. You visit doctors and therapists, and then one day, while all alone, you figure out that your child is going to die. His beautiful mother is at work and you don’t want her to know yet, so you cry for 2 hours and sit rocking and hugging your little one railing against creation. Mommy comes home and you all 3 sit together holding each other and cry some more. A couple of weeks later, testing confirms your terrible suspicion and your life is upside down.
So now you have two choices: Give up and mope about, feeling awful (and you WILL do that at times – how can you not?) or get on with life and give your beautiful little son the absolute best and most comfortable life you and mommy can make for as long as you are going to have him.
So that’s what we did. That’s what our friends did. That’s what our family did and our nurses and doctors and EMTs.
Mommy and I lived for Oliver everyday. As time flew by, our little man was clearly getting weaker. Still, we awoke each day to see that smile and to see those eyes twinkle. Just one little Ollie grin was enough to make your day, a dozen grins were almost too much to bear, yet Ollie gave them constantly.
Life definitely became tough. It’s not right that you have to feed your child through a tube into his stomach and become proficient at medical techniques that no parent should even have heard of, much less ever expect to know – still that grin was there – a grin that extended from Ollie’s heart and shone from his entire face like a ray of happiness – that was enough to keep you going. Ollie was never angry and he was never sad. It’s like he knew that mommy and daddy needed help to get through this struggle. He couldn’t help physically, but if there was ever a person stronger in spirit, I’ve never met them in my time on this earth.
The world will be a little dimmer for all of us. We’ll have pictures, of course, but as powerful as they are, they cannot possibly do justice to the energy of a little boy that must have been an angel. We’ll make it though.
Being Ollie’s daddy was the best job in the world. And I miss him. I love you son.
Monday, August 10, 2009
A Week without Ollie
It's been a long week and we miss our little guy terribly, but both of us have reached a certain peace. It's an uneasy one to be sure, but every moment of the day isn't filled with terrible aching (just every other).
We want to thank everyone that has helped out so much over the last year and the last week. It's a journey we never could have made without friends along the way. Your pain was palpable as we said our goodbyes to our angel.
I think the hardest times to come are going to be during those still, calm hours when we are by ourselves.
It's so quiet.
It's hard to imagine that the Darth Vader whoosh-chhhhh of the oxygen concentrator would be a sound a person would miss - but if we were hearing it, it would mean Ollie was still with us. We are making progress, but it's not going to be easy.
I woke up this morning around 5:45am - around the same time we knew for sure he was gone on that awful day a week ago. Hearing an EMT say "there's no pulse and no sound from the heart" is not something any parent should ever have to experience, least of all about their one year old.
Over on Alexa's blog, she mentions the great tragedy in death of "the snuffing out of a whole personality, and the world spinning on as if that personality never existed".
You can feel that process already as we all head back to our homes and we prepare to head back to work. Ollie will always have a place in our hearts - a huge one full of light and sadness and joy and shade - but his presence was so ephemeral that the rest of the world barely knew he was here.
His mom and I are determined to make it known. We'll continue spreading Ollie's story and the story of the countless other SMA children taken by, or living with, this disease. Doctors and OB/Gyns and Genetic Counselors all need to know more and need to know it soon. Too many do not. Changing this means that Ollie's life might put a little hiccup in that spin.
We love you Oliver - you were one of a kind.
We want to thank everyone that has helped out so much over the last year and the last week. It's a journey we never could have made without friends along the way. Your pain was palpable as we said our goodbyes to our angel.
I think the hardest times to come are going to be during those still, calm hours when we are by ourselves.
It's so quiet.
It's hard to imagine that the Darth Vader whoosh-chhhhh of the oxygen concentrator would be a sound a person would miss - but if we were hearing it, it would mean Ollie was still with us. We are making progress, but it's not going to be easy.
I woke up this morning around 5:45am - around the same time we knew for sure he was gone on that awful day a week ago. Hearing an EMT say "there's no pulse and no sound from the heart" is not something any parent should ever have to experience, least of all about their one year old.
Over on Alexa's blog, she mentions the great tragedy in death of "the snuffing out of a whole personality, and the world spinning on as if that personality never existed".
You can feel that process already as we all head back to our homes and we prepare to head back to work. Ollie will always have a place in our hearts - a huge one full of light and sadness and joy and shade - but his presence was so ephemeral that the rest of the world barely knew he was here.
His mom and I are determined to make it known. We'll continue spreading Ollie's story and the story of the countless other SMA children taken by, or living with, this disease. Doctors and OB/Gyns and Genetic Counselors all need to know more and need to know it soon. Too many do not. Changing this means that Ollie's life might put a little hiccup in that spin.
We love you Oliver - you were one of a kind.
Saturday, August 8, 2009
Ollie's Tale
Today is another day without our little Ollie-bear. We have candles burning all over the porch in his and all the other SMA Angels' honor.
So many asked for it, I've posted Ollie's slideshow at Picasa:
The music is by Renee and Jeremy and the album "It's a Big World". We highly recommend their stuff. It's so fresh and beautiful.
There are also new pictures from last month so feel free to explore those. I'm going to be burning DVDs that are playable in regular players after a little tweaking and I'll be able to make a copy for anyone that wants it.
This one has to be just right.
So many asked for it, I've posted Ollie's slideshow at Picasa:
The music is by Renee and Jeremy and the album "It's a Big World". We highly recommend their stuff. It's so fresh and beautiful.
There are also new pictures from last month so feel free to explore those. I'm going to be burning DVDs that are playable in regular players after a little tweaking and I'll be able to make a copy for anyone that wants it.
This one has to be just right.
Friday, August 7, 2009
Today was a beautiful day
Today we celebrated Ollie's life.
It was beautiful.
So many came out to join with us in saying goodbye to our little man that we were overwhelmed by the love and fellowship. The Shady Wagon Farm was such a beautiful and peaceful site to hold the service and the owners so warm and friendly to all of us.
Pastor Glen's message was uplifting and weather was gorgeous. I cannot think it a coincidence that a golden butterfly fluttered through just as he began.
Robin and Cece - the craft project was wonderful. Ollie loved pinwheels and the breeze that came up to allow them to spin on their own at just the right time was so touching.
Scott - story time and sing-a-long were so sweet and touching. I think Ollie was highly entertained.
I've had several requests to upload my remarks and I'll do so on the blog pretty soon. I'll also put up the slideshow of Ollie's life on Picasa and/or Youtube.
And thanks to all of you folks from the Flotsam Blog (fantastic place BTW!!!!) for coming over to pass on your heartwarming condolences as well as for all those you left on Flotsam. Getting the word out about SMA is so important. Ollie's life meant so much to his family and friends, we want to make sure it means something to the rest of the world, too.
Peace.
It was beautiful.
So many came out to join with us in saying goodbye to our little man that we were overwhelmed by the love and fellowship. The Shady Wagon Farm was such a beautiful and peaceful site to hold the service and the owners so warm and friendly to all of us.
Pastor Glen's message was uplifting and weather was gorgeous. I cannot think it a coincidence that a golden butterfly fluttered through just as he began.
Robin and Cece - the craft project was wonderful. Ollie loved pinwheels and the breeze that came up to allow them to spin on their own at just the right time was so touching.
Scott - story time and sing-a-long were so sweet and touching. I think Ollie was highly entertained.
I've had several requests to upload my remarks and I'll do so on the blog pretty soon. I'll also put up the slideshow of Ollie's life on Picasa and/or Youtube.
And thanks to all of you folks from the Flotsam Blog (fantastic place BTW!!!!) for coming over to pass on your heartwarming condolences as well as for all those you left on Flotsam. Getting the word out about SMA is so important. Ollie's life meant so much to his family and friends, we want to make sure it means something to the rest of the world, too.
Peace.
Tuesday, August 4, 2009
Ollie's Biography and Celebration of His Life
Yesterday still seems unreal. This morning we woke and I suppose hoped it was all an incredibly bad dream. Unfortunately, it was all too real. Ollie's gone but we will ALWAYS have our memories and his smile.
Today, we met with the wonderful people at the Cremation Society of the Carolinas to make plans for Oliver's service.
You can read the biography we put together on their site.
The Celebration of Oliver's Life will be held at 12Noon on Friday, August 7, 2009 at Shady Wagon Farm in New Hill, NC. It's a beautiful outdoor site with a pond and ducks and is the sort of place that would have given Oliver lots to look at and smile about.
2312 Pea Ridge Rd
New Hill, NC 27562-8940
(919) 542-7172
http://www.shadywagonfarm.com
Click here to bring up Google Maps and enter your own address for directions.
EDIT: A few folks have looked for basic guidance on getting there. From Raleigh and points east, you can take US 1 South towards Sanford. Take Exit 81 (Pea Ridge Rd) and make a right. The farm is just a couple of miles down the road.
From Greensboro and parts west, take US 421 South out of Greensboro toward Siler City and pick up US 64 East towards Pittsboro. Take a right on Beaver Creek Rd, drive for about 3 miles then take a right onto Pea Ridge Rd and drive for another 3 miles to the farm.
(Raleigh/East folks can also take US 64, just making a left on Beaver Creek - it's supposed to be a bit more scenic if longer).
This event is open for any who want to come with the only limitation being actual room at the site.
Please note, since this is intended to be a celebration and will also take place at least partially outdoors, dress appropriately. Casual or business casual attire will be fine. We don't expect suits and dresses (but they are fine if you must). Ollie was most comfortable half naked in a diaper, he wasn't down with fancy clothes. ;-)
There will be a potluck dinner after the service. If you wish to stay, please bring your favorite dish.
Today, we met with the wonderful people at the Cremation Society of the Carolinas to make plans for Oliver's service.
You can read the biography we put together on their site.
The Celebration of Oliver's Life will be held at 12Noon on Friday, August 7, 2009 at Shady Wagon Farm in New Hill, NC. It's a beautiful outdoor site with a pond and ducks and is the sort of place that would have given Oliver lots to look at and smile about.
2312 Pea Ridge Rd
New Hill, NC 27562-8940
(919) 542-7172
http://www.shadywagonfarm.com
Click here to bring up Google Maps and enter your own address for directions.
EDIT: A few folks have looked for basic guidance on getting there. From Raleigh and points east, you can take US 1 South towards Sanford. Take Exit 81 (Pea Ridge Rd) and make a right. The farm is just a couple of miles down the road.
From Greensboro and parts west, take US 421 South out of Greensboro toward Siler City and pick up US 64 East towards Pittsboro. Take a right on Beaver Creek Rd, drive for about 3 miles then take a right onto Pea Ridge Rd and drive for another 3 miles to the farm.
(Raleigh/East folks can also take US 64, just making a left on Beaver Creek - it's supposed to be a bit more scenic if longer).
This event is open for any who want to come with the only limitation being actual room at the site.
Please note, since this is intended to be a celebration and will also take place at least partially outdoors, dress appropriately. Casual or business casual attire will be fine. We don't expect suits and dresses (but they are fine if you must). Ollie was most comfortable half naked in a diaper, he wasn't down with fancy clothes. ;-)
There will be a potluck dinner after the service. If you wish to stay, please bring your favorite dish.
Monday, August 3, 2009
Sadness
It is so hard to type these words. Almost as hard as it was to say them.
Oliver's gone.
Two days shy of his first birthday.
While Neil and I had prepared ourselves (as much as is humanly possible), it still hurts so much that words cannot begin to describe it.
Thank you so much for your support and thoughts throughout this journey.
Please continue to pray for us.
Sent from my BlackBerry
Sunday, August 2, 2009
New Statistics on Carrier Frequency in North America
Neil and I are big proponents of carrier testing for SMA. We have both been tested and confirmed as carriers. Neil's (wonderful) sister, Amanda, got her results back and she is not a carrier. We are so thrilled for her and her husband, Philip. As I like to say, "Currently, prevention is the only cure."
It used to be estimated that carrier rate was between 1 in 40 and 1 in 60. However, a recent post on the Families of SMA website revealed more accurate statistics for North Americans.
It used to be estimated that carrier rate was between 1 in 40 and 1 in 60. However, a recent post on the Families of SMA website revealed more accurate statistics for North Americans.
July 27, 2009.
SMA is considered to be a pan-ethnic disease. However, carrier frequencies for many ethnicities, including most ethnic groups in North America, are unknown. To provide an accurate assessment of SMN1 mutation carrier frequencies in African American, Ashkenazi Jewish, Asian, Caucasian, and Hispanic populations, more than 1,000 specimens in each ethnic group were tested using a clinically validated, quantitative real-time PCR assay that measures exon 7 copy number.
The observed one-copy genotype frequency was 1 in 37 (2.7%) in Caucasian, 1 in 46 (2.2%) in Ashkenazi Jewish, 1 in 56 (1.8%) in Asian, 1 in 91 (1.1%) in African American, and 1 in 125 (0.8%) in Hispanic specimens. Additionally, an unusually high frequency of alleles with multiple copies of SMN1 was identified in the African American group (27% compared to 3.3% - 8.1%). This latter finding has clinical implications for providing accurate adjusted genetic risk assessments to the African American population.
The implications of this work are most significant for Hispanic patients who carry lower risks of SMN1 mutations and for African American patients who bear increased frequencies of two-copy alleles. These data will facilitate the accurate interpretation of clinical testing results and provide additional information for genetic counseling.
Differences in the frequency of SMA carriers were significant among several ethnic groups. This study provides an accurate assessment of allele frequencies and estimates of adjusted genetic risk that were previously unavailable to clinicians and patients considering testing.
Click here to read the full journal article.
When Neil and I were seeing a fertility specialist to get pregnant with Oliver, we were encouraged to get carrier testing for Cystic Fibrosis. But not for Spinal Muscular Atrophy.
Wednesday, July 29, 2009
An Update from the Homefront
Soooooo....let's see here. I suppose I should update you all on life around these parts. =)
It dawns on me as I review the posts since our last ER trip that Neil and I never told you Oliver's "official" diagnosis: pneumonia possibly due to aspiration (of his own slobber, I guess). Ollie never had a fever per se but we had been dosing him regularly with Tylenol and Motrin to help with his teething. (All four top teeth are trying to break through and have been for a couple weeks. Any minute now I expect to see a chomper on that upper gum.) He just finished his last dose of Augmentin last night. His secretions seem to be back to baseline (i.e., Ollie's version of normal). And he's also back to being his smiley, happy, talkative little self! With SMA, you consider yourself lucky to make it to 11.5 months old before getting your first pneumonia.
My cast came off on Friday 7/24. I may return to light-duty "work" with the restrictions that I should not lift or carry more than 10 pounds (Ollie's over 19 pounds now). I also should not do any repetitive twisting or turning with either hand. Makes for a challenging day, don't ya think? At least I can open my own soda cans again...hooray for small victories! I will be going back for yet another set of x-rays on 8/14. So far, it doesn't look like any surgery is going to be needed.
Due to my injuries, we got a temporary increase in nursing hours through CAP/C. They call them short-term intensive hours; I call them a godsend! We had been getting between 12 and 20 hours per week. Since my fall, we've been getting up to 16 hours a day which usually works out to 10am to 6pm (while Neil is at work) and then 11pm to 7am (overnight - so that everyone can get some rest). With Oliver's pneumonia, this was very helpful since he was getting albuterol treatments, CPT (chest physiotherapy), CoughAssist and suctioning about every four to six hours - including overnight.
Sadly, Grandma headed home yesterday (7/28). We had a great visit. She was a big help getting Oliver's room better organized, keeping the garden watered and harvested, mending clothes, and changing yucky, stinky diapers! Grandma also constructed a puppet show stage (out of a cardboard box) which Ollie and Mama helped to decorate with crayons. Ollie thoroughly enjoyed his Grandma's puppet shows.
I think that is all for now...I better scoot! Have a great day and thank you so much for keeping up with us.
It dawns on me as I review the posts since our last ER trip that Neil and I never told you Oliver's "official" diagnosis: pneumonia possibly due to aspiration (of his own slobber, I guess). Ollie never had a fever per se but we had been dosing him regularly with Tylenol and Motrin to help with his teething. (All four top teeth are trying to break through and have been for a couple weeks. Any minute now I expect to see a chomper on that upper gum.) He just finished his last dose of Augmentin last night. His secretions seem to be back to baseline (i.e., Ollie's version of normal). And he's also back to being his smiley, happy, talkative little self! With SMA, you consider yourself lucky to make it to 11.5 months old before getting your first pneumonia.
My cast came off on Friday 7/24. I may return to light-duty "work" with the restrictions that I should not lift or carry more than 10 pounds (Ollie's over 19 pounds now). I also should not do any repetitive twisting or turning with either hand. Makes for a challenging day, don't ya think? At least I can open my own soda cans again...hooray for small victories! I will be going back for yet another set of x-rays on 8/14. So far, it doesn't look like any surgery is going to be needed.
Due to my injuries, we got a temporary increase in nursing hours through CAP/C. They call them short-term intensive hours; I call them a godsend! We had been getting between 12 and 20 hours per week. Since my fall, we've been getting up to 16 hours a day which usually works out to 10am to 6pm (while Neil is at work) and then 11pm to 7am (overnight - so that everyone can get some rest). With Oliver's pneumonia, this was very helpful since he was getting albuterol treatments, CPT (chest physiotherapy), CoughAssist and suctioning about every four to six hours - including overnight.
Sadly, Grandma headed home yesterday (7/28). We had a great visit. She was a big help getting Oliver's room better organized, keeping the garden watered and harvested, mending clothes, and changing yucky, stinky diapers! Grandma also constructed a puppet show stage (out of a cardboard box) which Ollie and Mama helped to decorate with crayons. Ollie thoroughly enjoyed his Grandma's puppet shows.
I think that is all for now...I better scoot! Have a great day and thank you so much for keeping up with us.
Monday, July 27, 2009
Great News for Family
My little sis got her results back from the SMA carrier screening and she was negative! Little rays of sunshine like that help keep us going as things get harder with Oliver.
Thursday, July 23, 2009
Mama's Red Cast
Sent from my BlackBerry
Wednesday, July 22, 2009
Grandma's here!
Sent from my BlackBerry
Monday, July 20, 2009
Spa Day for Ollie
Sent from my BlackBerry
Ollie's New 'do
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Good mornin'!
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Sunday, July 19, 2009
Home Again
We are home and Ollie is comfy watching toons. We are praying for a good night. More later.
Thanks for the thoughts and prayers and good vibes. We don't know how much longer we have but we know we are loved and Ollie is loved.
X-ray #2
Ollie just got a second x-ray so we can see if any of the gunk we've
suctioned out was what was on the first x-ray. He's doing well on 1
liter of oxygen. So if the x-ray looks pretty good we hope to head
home sometime tonight. Keep on praying!
suctioned out was what was on the first x-ray. He's doing well on 1
liter of oxygen. So if the x-ray looks pretty good we hope to head
home sometime tonight. Keep on praying!
--
Sent from my mobile device
Ollie likes Daddy's phone
Ollie's gotten a dose of Augmentin as a precaution. He's starting to get weaned down on the oxygen. They started him on about 80% and dropped him to 60% and now he's at 28-30%. His sats are around 94-96. He's dozed off right now and his heart rate is lower now which is good.
Sent from my BlackBerry
ER X-rays
Ollie's x-rays today look a little hazy in the upper lobes of both lungs compared to the x-rays he had done on July 4th (when Mommy broke her elbows). There also appears to be a small spot in the lower left lobe that wasn't there on the 4th. Good news is he doesn't have a fever. We're trying to wean him down on the oxygen. We'll update again as soon as we can. Thanks for your thoughts and prayers.
Ollie's in the ER again
Sunday, July 12, 2009
Ollie is at Home
It's been so crazy for the last few days that we've forgotten to get a post up about Ollie coming home. There will be something much longer in the not too distant future.
The gist is that Ollie is at home and pretty comfortable. He is now on supplemental oxygen full time, but at a fairly low level. The biggest difference this has made is allowing him (and his caretakers!) to sleep through the night without constant apnea episodes.
Thanks for the thoughts, prayers, facebook posts, meals, companionship and so much else. This last week would've been an even bigger challenge without all of the help.
Thanks, too, to the fantastic staff at Duke. They made our stay in the ER and PICU as pleasant (and as short) as possible.
The gist is that Ollie is at home and pretty comfortable. He is now on supplemental oxygen full time, but at a fairly low level. The biggest difference this has made is allowing him (and his caretakers!) to sleep through the night without constant apnea episodes.
Thanks for the thoughts, prayers, facebook posts, meals, companionship and so much else. This last week would've been an even bigger challenge without all of the help.
Thanks, too, to the fantastic staff at Duke. They made our stay in the ER and PICU as pleasant (and as short) as possible.
Thursday, July 9, 2009
Ouchie!
Sent from my BlackBerry
Wednesday, July 8, 2009
Ollie with Bipap Mask
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Ollie without Bipap Mask
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Slideshow of Professional Portraits
Bianca Palmer of A Moment Like This did a superb job on our portraits! We love, love, love them. Thank you to Jenn for nominating us and to Bianca for choosing us! You can see a slide show of some of the shots at http://www.amomentlikethis.net/ollie/ - and turn on your speakers as Bianca has a great song to go with the slide show. (Tissues are optional.) =)
Thank you everyone for your warm thoughts and your prayers. We sincerely appreciate both!
Thank you everyone for your warm thoughts and your prayers. We sincerely appreciate both!
Ollie's in the PICU
Today (yesterday at this point) has been long and hard for Ollie, Mommy and Daddy. Ollie had a difficult day with congestion and breathing, and Bekka and Shelby (Ollie's nurse today) had a long long day trying to keep his sats up. CoughAssist, Suction, nebulizer, CoughAssist, more suction, more CoughAssist. Even with oxygen they were having a very hard time keeping his numbers where they needed to be.
Bekka called me at 3pm and told me I should probably come home and they were calling the EMS (for the 2nd time in 4 days!). This time we made the decision to go to Duke. He stayed pretty stable on O2 and EMS whisked him away to Duke ER.
After consulting with his pulmonologist, the decision was made to admit him to the hospital. He is in the Pediactric Intensive Care Unit tonight. They have him hooked up to a bi-pap machine in the hopes that oxygen will not be necessary during the night. He is expected to be in the hospital for several days (Monday was thrown around as a goal to go home). Given the number of episodes he has experienced recently despite our very diligent secretion management, they really want to observe and monitor the little guy for several days. He may have had an acute virus or he may just be experiencing a more rapid progression of SMA symptoms.
We thank you for your continued thoughts and prayers as these last few days have really struck home that Bekka and I have important decisions to make.
Not a single one of them is easy. Not a single one of them is pleasant.
Bekka called me at 3pm and told me I should probably come home and they were calling the EMS (for the 2nd time in 4 days!). This time we made the decision to go to Duke. He stayed pretty stable on O2 and EMS whisked him away to Duke ER.
After consulting with his pulmonologist, the decision was made to admit him to the hospital. He is in the Pediactric Intensive Care Unit tonight. They have him hooked up to a bi-pap machine in the hopes that oxygen will not be necessary during the night. He is expected to be in the hospital for several days (Monday was thrown around as a goal to go home). Given the number of episodes he has experienced recently despite our very diligent secretion management, they really want to observe and monitor the little guy for several days. He may have had an acute virus or he may just be experiencing a more rapid progression of SMA symptoms.
We thank you for your continued thoughts and prayers as these last few days have really struck home that Bekka and I have important decisions to make.
Not a single one of them is easy. Not a single one of them is pleasant.
Sunday, July 5, 2009
Of ER visits and Mommy's Broken Elbow
So last night was a bit eventful.
Ollie had a great day on Saturday - his numbers were good and he was a chatty little guy. Then evening arrived.
After a simple diaper change and being turned over, he began to get the distressed look he often has when breathing becomes difficult. No big deal. We deal with this all the time. Well, this was definitely not a normal event. We cough-assisted and suctioned and even used a bit of blow-by oxygen to keep his numbers reasonable. Even after 45 minutes, without the O2 he would drop immediately to dangerously low saturation levels. When it got to the point that he was dropping even with oxygen, we called 911.
Raleigh FD and Wake County EMS responded with their usual rapidity. These fantastic folks always listen carefully and do their best to understand Ollie's special condition. So we get him loaded up in the ambulance and they are streaming a bit of oxygen and he's doing pretty well. Bekka thinks it's possible she dislodged the worst of the mucus plug just before we loaded him up.
We thought about going to Duke as that is where his doctors are, but learned an important lesson: The Wake County Ambulances do not have pure sine wave inverters. This type of inverter produces power identical to house current rather than the square wave or modified sine wave of the cheap inverters people often use in their car. We've been researching the best inverter/battery/charger combos out there so we would have portable power for all his equipment, but we hadn't bought anything yet (that's about to change!). Without the cough assist, we decided we needed to go ahead to WakeMed since it's so much closer (and they really have a wonderful pediatric ER).
So off we go to WakeMed with mommy in the ambulance and daddy following. It's not exactly routine, but we are pretty comfortable with the process. Our arrival at WakeMed is when it became a bit more complicated.
The EMTs unloaded Ollie from the ambulance and were headed inside. Bekka handed me the cough assist and went out the side door of the vehicle. I suggested we should hurry as they were wheeling Ollie inside.
That's when she tripped over the unpainted concrete bump/stop the ambulances back up to to unload.
She went down hard. Real hard.
Being super-mommy/super-trooper, she dusted herself off and limped into the ER. At first, everything seemed alright and we were focused on getting Oliver stabilized and x-rayed. Once that was accomplished (a big kudos to Barry the Wonder Nurse and all the staff at WakeMed) and Oliver was clearly doing well we had a doctor look at Bekka. He didn't think anything major was wrong, but was concerned enough to have her left elbow x-rayed. I was worried because it had gotten very stiff as the evening wore on.
So Bekka had an x-ray in the kiddy room (apparently the biggest patient the tech had ever seen, lol). When the x-rays came back, it was very apparent Bekka had a fracture at the tip of the radius bone in her elbow. It wasn't broken off, thankfully. The doctor ordered a rigid splint for her to go home in and referred her to the Orthopedics department. She'll need to visit them this week to find out if anything else will need to be done.
Her right arm is doing pretty well - it hurts when she moves it and grip is reduced, but is more functional than the left. If it doesn't get better over the next day or 2, she'll need to have it checked out in more detail when she sees the orthopedist.
As it is, she's going to be the one-armed mommy trying to do a job that can keep TWO people busy. We hopefully we'll be ramping up nursing assistance for Ollie soon, cross your fingers!!!
We got home about 6am. Man are we tired.
Ollie had a great day on Saturday - his numbers were good and he was a chatty little guy. Then evening arrived.
After a simple diaper change and being turned over, he began to get the distressed look he often has when breathing becomes difficult. No big deal. We deal with this all the time. Well, this was definitely not a normal event. We cough-assisted and suctioned and even used a bit of blow-by oxygen to keep his numbers reasonable. Even after 45 minutes, without the O2 he would drop immediately to dangerously low saturation levels. When it got to the point that he was dropping even with oxygen, we called 911.
Raleigh FD and Wake County EMS responded with their usual rapidity. These fantastic folks always listen carefully and do their best to understand Ollie's special condition. So we get him loaded up in the ambulance and they are streaming a bit of oxygen and he's doing pretty well. Bekka thinks it's possible she dislodged the worst of the mucus plug just before we loaded him up.
We thought about going to Duke as that is where his doctors are, but learned an important lesson: The Wake County Ambulances do not have pure sine wave inverters. This type of inverter produces power identical to house current rather than the square wave or modified sine wave of the cheap inverters people often use in their car. We've been researching the best inverter/battery/charger combos out there so we would have portable power for all his equipment, but we hadn't bought anything yet (that's about to change!). Without the cough assist, we decided we needed to go ahead to WakeMed since it's so much closer (and they really have a wonderful pediatric ER).
So off we go to WakeMed with mommy in the ambulance and daddy following. It's not exactly routine, but we are pretty comfortable with the process. Our arrival at WakeMed is when it became a bit more complicated.
The EMTs unloaded Ollie from the ambulance and were headed inside. Bekka handed me the cough assist and went out the side door of the vehicle. I suggested we should hurry as they were wheeling Ollie inside.
That's when she tripped over the unpainted concrete bump/stop the ambulances back up to to unload.
She went down hard. Real hard.
Being super-mommy/super-trooper, she dusted herself off and limped into the ER. At first, everything seemed alright and we were focused on getting Oliver stabilized and x-rayed. Once that was accomplished (a big kudos to Barry the Wonder Nurse and all the staff at WakeMed) and Oliver was clearly doing well we had a doctor look at Bekka. He didn't think anything major was wrong, but was concerned enough to have her left elbow x-rayed. I was worried because it had gotten very stiff as the evening wore on.
So Bekka had an x-ray in the kiddy room (apparently the biggest patient the tech had ever seen, lol). When the x-rays came back, it was very apparent Bekka had a fracture at the tip of the radius bone in her elbow. It wasn't broken off, thankfully. The doctor ordered a rigid splint for her to go home in and referred her to the Orthopedics department. She'll need to visit them this week to find out if anything else will need to be done.
Her right arm is doing pretty well - it hurts when she moves it and grip is reduced, but is more functional than the left. If it doesn't get better over the next day or 2, she'll need to have it checked out in more detail when she sees the orthopedist.
As it is, she's going to be the one-armed mommy trying to do a job that can keep TWO people busy. We hopefully we'll be ramping up nursing assistance for Ollie soon, cross your fingers!!!
We got home about 6am. Man are we tired.
Saturday, July 4, 2009
Pictures!
OK, so we owe a longer post than this one, but there are a whole slew of new photos of Ollie to keep you busy. Just click on his picture to the right to see them! Ollie even made it to the beach this week (he's really cute in trunks and sunglasses!)
In other news, we have started the medical trial for an experimental treatment (CARNIVAL I). We'll certainly have a more detailed post up soon regarding that. Ollie is on day 4 of the medications and seems to be tolerating them well.
Oh yes, we've been officially approved for CAP-C and even have his cards in hand! As you can imagine that has been a huge load off our minds. Bekka now has nurses coming in 3-4 days a week for a few hours which allows her to catch up on sleep and make all the necessary phone calls!
Little guy has also had a rough few days. We think he's had a head cold and it's made keeping him suctioned out very challenging. So far he's had a great Saturday for daddy while mommy is at work!
In other news, we have started the medical trial for an experimental treatment (CARNIVAL I). We'll certainly have a more detailed post up soon regarding that. Ollie is on day 4 of the medications and seems to be tolerating them well.
Oh yes, we've been officially approved for CAP-C and even have his cards in hand! As you can imagine that has been a huge load off our minds. Bekka now has nurses coming in 3-4 days a week for a few hours which allows her to catch up on sleep and make all the necessary phone calls!
Little guy has also had a rough few days. We think he's had a head cold and it's made keeping him suctioned out very challenging. So far he's had a great Saturday for daddy while mommy is at work!
Saturday, June 20, 2009
Families of SMA - North and South Carolina Chapter Meeting
I got an email from Families of SMA last week with exciting news for families (and their support networks) living in North and South Carolina!
It read:
Obviously, Neil and I are planning on being there with our (large) support group. I'm so glad that it's after I get back from the conference since I'll have lots of information to share!
If you or someone you know is interested in attending the meeting, please contact Jessica Adams at the email address listed above.
Hope to see you there!!!!
It read:
There is a meeting planned to get a North Carolina and South Carolina Familes of SMA Chapter up and running!
On June 27, 2009 from 12:30pm to 2:30pm
At the Downtown Sheraton in Raleigh, NC
For more information, please contact Jessica Adams at qst4it@earthlink.net
If you or someone you know is interested in attending the meeting, please contact Jessica Adams at the email address listed above.
Hope to see you there!!!!
Friday, June 19, 2009
Have You Contacted Your Members of Congress for Ollie Yet?
No? Well, check out the Families of SMA's Legislative web page. Follow the "Contacting Congress" link. Look at the "Tips for Contacting Congress" and the "Top Ten List."
Alright. Now go get your phone.
Got it? Good. Dial (202) 224-3121 for the Capitol switchboard. Ask to speak to your Senator or Representative's office. (You'll speak to an intern, but that's okay.) Tell the intern your name and that you are a constituent. Tell them you would like for the Senator or Representative to co-sponsor the SMA Treatment Acceleration Act. Tell them about Ollie. Tell them that the SMA Treatment Acceleration Act is important to Ollie and important to you.
That's it. It'll take you about 2 minutes. And when you find out that your Senator or Representative has co-sponsored the bill, be sure to call back and thank them.
Now, pat yourself on the back for a job well done!
Ollie thanks you from the bottom of his adorable, little heart!
Alright. Now go get your phone.
Got it? Good. Dial (202) 224-3121 for the Capitol switchboard. Ask to speak to your Senator or Representative's office. (You'll speak to an intern, but that's okay.) Tell the intern your name and that you are a constituent. Tell them you would like for the Senator or Representative to co-sponsor the SMA Treatment Acceleration Act. Tell them about Ollie. Tell them that the SMA Treatment Acceleration Act is important to Ollie and important to you.
That's it. It'll take you about 2 minutes. And when you find out that your Senator or Representative has co-sponsored the bill, be sure to call back and thank them.
Now, pat yourself on the back for a job well done!
Ollie thanks you from the bottom of his adorable, little heart!
Tuesday, June 16, 2009
Fundraising and Ollie's Needs - So what's next?
So Bekka and I have been floored by the outpouring of support for our special little guy but anticipation and planning never stops for us.
We've been thinking about what we can do to raise additional funds for Ollie and have heard ideas for walks and golf tournaments and car washes and the like. Neither of us has ever organized anything like that but we are willing to learn and do for the little tyke. If anyone out there has thoughts, please let us know!
When Bekka gets back from the SMA conference, we are going to take a long look at what we need and when we need it. In many ways, we never anticipated Oliver would be with us this long. Now he's almost a toddler and we have to continue making plans and anticipating his needs.
We have had questions about what sort of expenses and needs Oliver is incurring or we are expecting. The following is a short list and is in no way complete.
We've been thinking about what we can do to raise additional funds for Ollie and have heard ideas for walks and golf tournaments and car washes and the like. Neither of us has ever organized anything like that but we are willing to learn and do for the little tyke. If anyone out there has thoughts, please let us know!
When Bekka gets back from the SMA conference, we are going to take a long look at what we need and when we need it. In many ways, we never anticipated Oliver would be with us this long. Now he's almost a toddler and we have to continue making plans and anticipating his needs.
We have had questions about what sort of expenses and needs Oliver is incurring or we are expecting. The following is a short list and is in no way complete.
- Better mobility for Ollie. We will be trying to figure out a wheelchair or stroller that allows him to lie almost flat while also allowing us to more easily transport equipment. It's quite a sight seeing us trek to and from a doctor visit!
- Appropriate toys and games for Ollie. It's hard enough entertaining a regular 10 month old, but entertaining an SMA child is even tougher. We will be looking to get creative to provide Ollie with the stimulation and entertainment he needs beyond television and videos.
- Medical expenses including copays, coinsurance, and out of pocket expenses for Ollie's multitude of medical equipment. It appears we have been approved for CAP-C (we are awaiting the official letter). This will help relieve the burden, but not completely.
- Insurance. We don't know the final resolution of Bekka's job situation yet, but it is likely we'll be paying out of pocket costs for her insurance and Oliver's insurance for the foreseeable future.
- In the nice to have but not yet critical category: A larger vehicle. Bekka and I both love small cars (We have an Integra and a Mazda 3) but as Ollie grows and his equipment needs grow, we'll be looking at acquiring something larger to make it easier to transport us all. We have wonderful friends that loan us vehicles on a moments notice -but you hate to abuse that!
Monday, June 15, 2009
$12,500 (and growing)
Wow.
Thank You!
Between anonymous donations, the incredible yard sales and bake sales, jewelry sales and cookware sales, the fantastic fundraiser in Deep Gap and all the wonderful folks at Powder Horn Mountain, Ollie is one well-to-do 10 month old. In fact, he's sending his mommy to Cincinnati to learn more about SMA!
We can't possibly thank everyone directly, but we want you to know that we feel the love and hear the prayers everyday.
We wish you all a day full of Ollie smiles!
Thank You!
Between anonymous donations, the incredible yard sales and bake sales, jewelry sales and cookware sales, the fantastic fundraiser in Deep Gap and all the wonderful folks at Powder Horn Mountain, Ollie is one well-to-do 10 month old. In fact, he's sending his mommy to Cincinnati to learn more about SMA!
We can't possibly thank everyone directly, but we want you to know that we feel the love and hear the prayers everyday.
We wish you all a day full of Ollie smiles!
Ollie's Big Weekend
Ollie had a big weekend. Aunts and Uncles and Grandparents and Greatgrandparents oh my! He was a smiling little guy all weekend long.
Thanks for coming everyone and Happy Birthday Papaw Clay (even though you'll probably never see this!).
We'll try to get some pictures up shortly.
Thanks for coming everyone and Happy Birthday Papaw Clay (even though you'll probably never see this!).
We'll try to get some pictures up shortly.
Thursday, June 11, 2009
On "Being Social with SMA" and the SMA Treatment Acceleration Act
I've started following several children with SMA on the web recently. One of those children is Gwendolyn Strong. Her parents, Bill and Victoria Strong, have an online Petition to Cure SMA. The petition is an effort to support the SMA Treatment Acceleration Act (H.R. 2149 and S. 1158).
There are two things that everyone can do to support families affected by SMA: sign the Petition to Cure SMA and contact your Senators and Congressmen or Congresswomen about the SMA Treatment Acceleration Act. The Muscular Dystrophy Association (MDA) has a great advocacy web page that allows you to input your zip code and send an email to your representatives. It has a generic letter that you can adapt or you can type your own. Be sure to contact both the House of Representatives and the Senate.
Back to the Strong family. One of the recent posts on their blog was about Gwendolyn being social. This is one of the hardest things about SMA. The affected children are typically very bright and social. But you have to get very creative in order for them to "play" with other children without compromising their health. The Strongs' post covered that topic quite nicely. Here it is:
Isn't that what any parent wants is for their child, to be happy? Sadly, this horrible, terrible, awful disease makes that so much harder than it should be.
There are two things that everyone can do to support families affected by SMA: sign the Petition to Cure SMA and contact your Senators and Congressmen or Congresswomen about the SMA Treatment Acceleration Act. The Muscular Dystrophy Association (MDA) has a great advocacy web page that allows you to input your zip code and send an email to your representatives. It has a generic letter that you can adapt or you can type your own. Be sure to contact both the House of Representatives and the Senate.
Back to the Strong family. One of the recent posts on their blog was about Gwendolyn being social. This is one of the hardest things about SMA. The affected children are typically very bright and social. But you have to get very creative in order for them to "play" with other children without compromising their health. The Strongs' post covered that topic quite nicely. Here it is:
Gwendolyn is truly a social child. She has been since she was a tiny baby. During our first hospitalization when she was only 9-weeks-old, she showed no fear toward strangers, and instead beckoned every nurse with a sweet grin and a look that said, "Hi, come play with me." And she hasn't slowed since.
This is something we have struggled with since Gwendolyn's SMA diagnosis and something that all SMA parents have to constantly weigh -- risk of germs vs. social interaction and that ever present "quality of life" we try to measure. In the beginning, there was no way I wanted to be near anyone, but my baby had turned blue in my arms half a dozen times in two months and I just couldn't take any more. Because of my fear Gwendolyn had very limited contact with others or with the outside world, but soon we all grew claustrophobic. We started with walks on deserted streets, to parks where not a single person was currently gathered, at times when others were still at home. It felt good -- not right away, but each time we stepped out the door it became more comfortable. Slowly that gave way to pushing ourselves a bit further for Gwendolyn's sake and that felt good, too. As we started to come out of our shell shock winter hit and the threat of a common cold or the mild flu that almost everyone seems to get during that season shifted the scale again and so we hunkered down. It is not uncommon for SMA families to literally never leave the house in winter. And I can completely understand why. But, Gwendolyn is social, our social butterfly, and began demanding more stimulation. We continued our walks and as the sick season began to end, we started going to places like zoos and museums and even restaurants (usually at off times). But, Gwendolyn is ever-changing and so we are adjusting our barometer once again by doing more with other children. This is obviously a risk, little children mean little germies, but she so wants to be with her peers. She loves watching them play; when they laugh, she laughs; when they cry, she looks at me with concern. And she adores it when they stop their darling toddler busy-ness and come over to say hello, share a sticker, include her in the fun. She has a small group of pals that we now see on a regular basis. It makes a world of difference that I adore all of her buddies' parents and they understand our germaphobia and support whatever makes us comfortable.
Yes, sometimes being out, being social, pushing our boundaries makes me nervous -- make that I'm always a little bit nervous -- but we bring anti-bacterial wipes, try to minimize any obvious risk by avoiding crowds or places people go when sick (the grocery store is off limits), and leave if we are uncomfortable (I hear a sneeze from a mile away...not kidding). And, ultimately, if it makes Gwendolyn happy, we find a way to do it.
Isn't that what any parent wants is for their child, to be happy? Sadly, this horrible, terrible, awful disease makes that so much harder than it should be.
Thinking of Mackinley
We're thinking about Mackinley and his family today. His surgery is scheduled to start at 10:15am. Dr. Rice who performed Oliver's surgery is also doing Mackinley's surgery. We hope that things go as smoothly for Mackinley as they did for Ollie.
Monday, June 8, 2009
Ollie & Mackinley Meet
We had a "routine" visit at Duke today with Dr. Smith. He sees Oliver every month or so to monitor his progress. At this visit we also got to meet Joanne Mackey and Dr. Kishnani. They will be part of the team that will be running the clinical trial (CARNIVAL I) starting around June 23rd! We are excited and hopeful about this study. It's not a cure, but we hope it at least leads to some treatment options for kids with SMA.
After our appointment, we all went to visit Mackinley and his family. You can follow Mackinley's journey on his CaringBridge site. It was really cute to see Ollie and Mack lying beside each other. They really seemed to enjoy looking at one another. And little Mackinley had a LOT to say! We're not sure, but we think they may have been confirming their plans to take over the world. Or at least Duke Children's! Personally, I think they plan on doing it by flirting with all the ladies. =)
Neil and I had a nice visit with April, Kyli and Paige (who turns 6 years old on June 9th...she wants everyone to know). And we got to meet Brian as well. Please keep April, Brian, Mackinley and their family in your thoughts and prayers. Mackinley's g-tube surgery is scheduled for this Thursday, June 11th.
After our appointment, we all went to visit Mackinley and his family. You can follow Mackinley's journey on his CaringBridge site. It was really cute to see Ollie and Mack lying beside each other. They really seemed to enjoy looking at one another. And little Mackinley had a LOT to say! We're not sure, but we think they may have been confirming their plans to take over the world. Or at least Duke Children's! Personally, I think they plan on doing it by flirting with all the ladies. =)
Neil and I had a nice visit with April, Kyli and Paige (who turns 6 years old on June 9th...she wants everyone to know). And we got to meet Brian as well. Please keep April, Brian, Mackinley and their family in your thoughts and prayers. Mackinley's g-tube surgery is scheduled for this Thursday, June 11th.
Saturday, June 6, 2009
Cincinnati Bound
Families of SMA is having its 25th Anniversary Families and Professionals Conference this year. It will be held in Cincinnati from Thursday, June 18th through Sunday, June 21st (which is Father's Day). I'm excited that Ollie's Auntie Amanda and I are going to be there. I hope to come home with lots more info and lots of great ideas. =)
Of Awesome People and Spaghetti Dinners
So today in Deep Gap, NC, the wonderful folks of the community and the Stewart Simmons VFD are having a fundraiser for Oliver. A spaghetti dinner and a raffle are on tap.
It's things like this...compassionate actions from complete strangers or those whose life Ollie has only peripherally touched that keep us going each day. There are a lot of wonderful people out there. It's easy to be bitter and cynical in today's world...there are lots of perfectly valid reasons (see previous post), but every time we get a check from someone we barely know (or don't!) or someone holds a fantastic fundraiser in honor of our little guy or brings dinner or just drops by to chat with Bekka during the day, it lightens the load a little bit.
Neighbors, friends, family, coworkers, strangers - so many people have stepped up to help. For that we thank you and will continue to thank you. It may take a few months to get that thank you card out (it may not even make it at all, I'm sorry to say), but please know from the bottom of our hearts we thank you.
It's going to continue to be a struggle and it's hard not being able to handle everything ourselves sometimes, but we are so thankful for the help. As much as of a challenge as it is to meet Oliver's daily needs and as tough as the loss of Bekka's job is, it would be so much harder without you.
It's things like this...compassionate actions from complete strangers or those whose life Ollie has only peripherally touched that keep us going each day. There are a lot of wonderful people out there. It's easy to be bitter and cynical in today's world...there are lots of perfectly valid reasons (see previous post), but every time we get a check from someone we barely know (or don't!) or someone holds a fantastic fundraiser in honor of our little guy or brings dinner or just drops by to chat with Bekka during the day, it lightens the load a little bit.
Neighbors, friends, family, coworkers, strangers - so many people have stepped up to help. For that we thank you and will continue to thank you. It may take a few months to get that thank you card out (it may not even make it at all, I'm sorry to say), but please know from the bottom of our hearts we thank you.
It's going to continue to be a struggle and it's hard not being able to handle everything ourselves sometimes, but we are so thankful for the help. As much as of a challenge as it is to meet Oliver's daily needs and as tough as the loss of Bekka's job is, it would be so much harder without you.
Of Robinul and Job Loss...
So two disappointing things to report today (Please pardon the somewhat bitter tone)
1. The issues with secretion thickening due to the Robinul have resulted in several de-sat incidents that have forced us to wean Ollie from the medication. In a couple of days, we are probably going to try again at 1/2 dose to see if that will help secretion amounts, but without the excessive thickening.
2. As of last Sunday, Bekka no longer has a job. Well, at least not one with benefits. Her FMLA leave was finally exhausted and being bound hand and literal foot by corporate policy, she was reduced to part time with the requisite pay cut. They have been wonderfully flexible with Bekka and her schedule, but time was not on our side. In many ways we never expected Oliver to make it this long, but he's been such a champ and an unexpectedly strong little boy!
There is a terrible irony in this story: We are pretty sure the only reason this happened when it did is because we called to ask about Bekka's status. We were trying to be proactive and make plans for ourselves and Ollie over the coming months and I asked Bekka to call HR to see where we stood. They hadn't the foggiest idea. It took them over a week to figure out her leave balance. She confirmed it one night by sitting down with all her pay stubs and adding up time worked.
Unfortunately, they let Bekka know Friday morning (6/5) that retroactive to 5/31 she was part time. One really wonders that had we simply played the military's game of "don't ask, don't tell",
if we might have gone indefinitely before someone figured it out. Who knows!
Would that have been "moral"? I don't know, but we are the ones with a terminally ill child, so our judgment might be clouded on the question.
It should be noted that all of Bekka's local coworkers and her entire management chain have been nothing short of fantastic. Wonderfully warm and supportive people all and all equally disappointed in how things resolved! This is strictly a corporate issue and it's not unique to Stride Rite. We aren't angry with Stride Rite. We think they have been more supportive than many companies would have been in the same position. We ARE angry about the difficulties involved in this entire process when we really just want to take care of our little boy.
So where does this leave us? Honestly, things wouldn't be so bad if I didn't work for the state. Working for a government that some sources now rank 50th in the nation in support for worker's families, it's actually better for us to COBRA Bekka and Ollie at the cost of $671 a month out of pocket than it is for us to put them on my insurance.
Yep. You read that right.
It would be a little cheaper (but not a lot!) to put them on my insurance each month, but the loss of benefits is too large. The things not covered by the state or at higher costs are legion. If you had any misconceptions about the "great benefits" offered by the state, you can put those to bed now.
It will be interesting to see what happens to the state employee base when economic conditions begin improving...they made multiple "adjustments" to our health plan this year that resulted in the doubling of deductibles and many copays while also increasing the costs for family coverage. It's quite obvious state employees aren't resources - they are the proverbial cogs in the machine, and it's doubly obvious they really only want healthy single people working there now.
So who wants to step up and tell me just how awesome the American medical and insurance system is right now? Bueller? Bueller?
For happier news, see the post I'm about to make...
1. The issues with secretion thickening due to the Robinul have resulted in several de-sat incidents that have forced us to wean Ollie from the medication. In a couple of days, we are probably going to try again at 1/2 dose to see if that will help secretion amounts, but without the excessive thickening.
2. As of last Sunday, Bekka no longer has a job. Well, at least not one with benefits. Her FMLA leave was finally exhausted and being bound hand and literal foot by corporate policy, she was reduced to part time with the requisite pay cut. They have been wonderfully flexible with Bekka and her schedule, but time was not on our side. In many ways we never expected Oliver to make it this long, but he's been such a champ and an unexpectedly strong little boy!
There is a terrible irony in this story: We are pretty sure the only reason this happened when it did is because we called to ask about Bekka's status. We were trying to be proactive and make plans for ourselves and Ollie over the coming months and I asked Bekka to call HR to see where we stood. They hadn't the foggiest idea. It took them over a week to figure out her leave balance. She confirmed it one night by sitting down with all her pay stubs and adding up time worked.
Unfortunately, they let Bekka know Friday morning (6/5) that retroactive to 5/31 she was part time. One really wonders that had we simply played the military's game of "don't ask, don't tell",
if we might have gone indefinitely before someone figured it out. Who knows!
Would that have been "moral"? I don't know, but we are the ones with a terminally ill child, so our judgment might be clouded on the question.
It should be noted that all of Bekka's local coworkers and her entire management chain have been nothing short of fantastic. Wonderfully warm and supportive people all and all equally disappointed in how things resolved! This is strictly a corporate issue and it's not unique to Stride Rite. We aren't angry with Stride Rite. We think they have been more supportive than many companies would have been in the same position. We ARE angry about the difficulties involved in this entire process when we really just want to take care of our little boy.
So where does this leave us? Honestly, things wouldn't be so bad if I didn't work for the state. Working for a government that some sources now rank 50th in the nation in support for worker's families, it's actually better for us to COBRA Bekka and Ollie at the cost of $671 a month out of pocket than it is for us to put them on my insurance.
Yep. You read that right.
It would be a little cheaper (but not a lot!) to put them on my insurance each month, but the loss of benefits is too large. The things not covered by the state or at higher costs are legion. If you had any misconceptions about the "great benefits" offered by the state, you can put those to bed now.
It will be interesting to see what happens to the state employee base when economic conditions begin improving...they made multiple "adjustments" to our health plan this year that resulted in the doubling of deductibles and many copays while also increasing the costs for family coverage. It's quite obvious state employees aren't resources - they are the proverbial cogs in the machine, and it's doubly obvious they really only want healthy single people working there now.
So who wants to step up and tell me just how awesome the American medical and insurance system is right now? Bueller? Bueller?
For happier news, see the post I'm about to make...
Wednesday, June 3, 2009
CAP/C Approval....Almost
I got confirmation today from the nurse case manager that our CAP/C approval letter from the Department of Medical Assistance (DMA) had arrived in her office. Yippee! She still has to get a few things arranged with the Wake County Medicaid representative. And the Wake County Medicaid representative still has to get a letter from Disability Determination Services that says Oliver is disabled.
It's one hoop after another hoop after another hoop to jump through to get everything approved.
I spoke with the representative at Disability Determination Services and pointed out to him the Spinal Muscular Atrophy Types 0 and 1 are on Social Security's list of Compassionate Allowances. He either didn't know about the Compassionate Allowances or didn't care. Regardless, the Disability Determination Services doctor has to review Oliver's medical records to determine if he's disabled.
I'm still excited. One hoop down, who knows how many more to go!
It's one hoop after another hoop after another hoop to jump through to get everything approved.
I spoke with the representative at Disability Determination Services and pointed out to him the Spinal Muscular Atrophy Types 0 and 1 are on Social Security's list of Compassionate Allowances. He either didn't know about the Compassionate Allowances or didn't care. Regardless, the Disability Determination Services doctor has to review Oliver's medical records to determine if he's disabled.
I'm still excited. One hoop down, who knows how many more to go!
Mommy's Technical Notes re: ER visits
When we first started researching SMA, just before Oliver's "official" diagnosis, I remember reading different sites - university web sites, FSMA, various blogs - and wondering to myself what all these different terms and numbers all meant. What is a de-sat? Why is it important to have a pulse ox? For that matter, what is a pulse ox?
As we've walked along our SMA path, we've vowed to not only give Oliver the best care that we can but to also re-pay the SMA community: to "mentor" other families much like we were; to answer as many questions for our friends and family as we could; to raise awareness of the disease; and to raise awareness about carrier testing.
This post - the one you are currently reading - is meant to help answer some of those questions. We've told you about our ER trips and Ollie's fondness for riding in the ambulance. (He's a little boy, after all, and they like vehicles that go fast, drive on medians, and make loud "woo wooo wooo" sounds, right?) But how do we know when to suction or do CoughAssist? And when do we decide to call 911? And why does Ollie need to go to the ER so often? (Please feel free to ask us any other questions you may have. We're happy to answer them.)
So, we've been to the ER three times. On April 8th, the pediatrician's office called the ambulance for me. Our second visit was on May 4th after a routine visit to Duke to see the neurologist. And our most recent visit on May 29th. All three visits are likely due to mucus plugs - a fairly common malady for folks with SMA. Since SMA weakens the muscles used to breathe and to cough, small amounts of mucus - that unaffected people would just cough and clear - build up in SMA patients and clog a portion of the lung. In severe cases this can result in a partial collapse of the lung.
When we have these little adventures to the ER, they are usually precipitated by oxygen desaturations (often called de-sats). In Oliver's case, his baseline (or normal) oxygen saturations are between 97 and 100 percent at rest and between 95 and 98 percent when asleep. If he is awake and his sats drop below 95, we can usually bring them back up with some suctioning and CoughAssist. Dropping to 95 isn't usually a panic situation.
Everyone's sats vary at different times. When you sleep, your sats will decrease because all the muscles in your body relax - including the muscles that help you breathe. At night, when Oliver is asleep, he will often de-sat into the mid to upper 80s and his pulse ox will alarm. (The settings are adjustable on his pulse ox. We have it set to alarm if his oxygen drops below 90 or if his heart rate rises above 200 beats per minute.) This may happen only once a night or it may happen repeatedly. Usually, he will drop long enough for the alarm to sound once (or maybe twice) and then he'll bounce right back into the 90s. Sometimes it will sound more than once or twice and it takes turning his head or rubbing his leg to get him to take deeper breaths and bring his sats back up. Occasionally, we may even have to wake him to do CoughAssist or to suction.
If his sats drop and his heart rate rises at the same time, it's a pretty good indication that he's distressed. Each time we've gone to the ER, his sats have dropped into the 70s (or lower) and all of the CoughAssist and suctioning we've done haven't brought him back into the 90s. Right before the first ER visit, from the pediatrician's office, we were getting sats of mid to upper 60s when they called 911. By the time the ambulance arrived, the pediatrician had done quite a bit of suctioning and Oliver's sats were in the upper 70s.
The second trip by ambulance to the ER was right after we had gotten back from Duke to see Dr. Smith, Oliver's neurologist. Ollie had been sounding raspy while we were at the appointment. I'd done several rounds of suctioning. I checked his sats and suctioned a little - to be on the safe side - right before we got in the car to head home. Oliver slept the entire ride home.
When I got him out of the car, he was obviously distressed. His little face was covered in beads of sweat. He looked at me with concern in his eyes. I took him in the house and hooked up his pulse ox. I was expecting a reading of low 90s or maybe upper 80s. Nope. He was registering in the 70s. I did CoughAssist and suctioned repeatedly and only got him "stablized" into the mid-80s. My dear friend, Cathy, got to make the 911 call that time.
The third ER visit Neil has told you all about in his post. Will it be the last trip to the ER? Probably not. As his SMA progresses, all of Oliver's muscles will continue to get weaker....including the ones used to breath and to cough. In spite of all of our "drama", we consider ourselves very fortunate. The only hospitalization Ollie has had was for his g-tube and Nissen surgery. And, so far, he's not had a collapsed lung. Many families are not as lucky.
As we've walked along our SMA path, we've vowed to not only give Oliver the best care that we can but to also re-pay the SMA community: to "mentor" other families much like we were; to answer as many questions for our friends and family as we could; to raise awareness of the disease; and to raise awareness about carrier testing.
This post - the one you are currently reading - is meant to help answer some of those questions. We've told you about our ER trips and Ollie's fondness for riding in the ambulance. (He's a little boy, after all, and they like vehicles that go fast, drive on medians, and make loud "woo wooo wooo" sounds, right?) But how do we know when to suction or do CoughAssist? And when do we decide to call 911? And why does Ollie need to go to the ER so often? (Please feel free to ask us any other questions you may have. We're happy to answer them.)
So, we've been to the ER three times. On April 8th, the pediatrician's office called the ambulance for me. Our second visit was on May 4th after a routine visit to Duke to see the neurologist. And our most recent visit on May 29th. All three visits are likely due to mucus plugs - a fairly common malady for folks with SMA. Since SMA weakens the muscles used to breathe and to cough, small amounts of mucus - that unaffected people would just cough and clear - build up in SMA patients and clog a portion of the lung. In severe cases this can result in a partial collapse of the lung.
When we have these little adventures to the ER, they are usually precipitated by oxygen desaturations (often called de-sats). In Oliver's case, his baseline (or normal) oxygen saturations are between 97 and 100 percent at rest and between 95 and 98 percent when asleep. If he is awake and his sats drop below 95, we can usually bring them back up with some suctioning and CoughAssist. Dropping to 95 isn't usually a panic situation.
Everyone's sats vary at different times. When you sleep, your sats will decrease because all the muscles in your body relax - including the muscles that help you breathe. At night, when Oliver is asleep, he will often de-sat into the mid to upper 80s and his pulse ox will alarm. (The settings are adjustable on his pulse ox. We have it set to alarm if his oxygen drops below 90 or if his heart rate rises above 200 beats per minute.) This may happen only once a night or it may happen repeatedly. Usually, he will drop long enough for the alarm to sound once (or maybe twice) and then he'll bounce right back into the 90s. Sometimes it will sound more than once or twice and it takes turning his head or rubbing his leg to get him to take deeper breaths and bring his sats back up. Occasionally, we may even have to wake him to do CoughAssist or to suction.
If his sats drop and his heart rate rises at the same time, it's a pretty good indication that he's distressed. Each time we've gone to the ER, his sats have dropped into the 70s (or lower) and all of the CoughAssist and suctioning we've done haven't brought him back into the 90s. Right before the first ER visit, from the pediatrician's office, we were getting sats of mid to upper 60s when they called 911. By the time the ambulance arrived, the pediatrician had done quite a bit of suctioning and Oliver's sats were in the upper 70s.
The second trip by ambulance to the ER was right after we had gotten back from Duke to see Dr. Smith, Oliver's neurologist. Ollie had been sounding raspy while we were at the appointment. I'd done several rounds of suctioning. I checked his sats and suctioned a little - to be on the safe side - right before we got in the car to head home. Oliver slept the entire ride home.
When I got him out of the car, he was obviously distressed. His little face was covered in beads of sweat. He looked at me with concern in his eyes. I took him in the house and hooked up his pulse ox. I was expecting a reading of low 90s or maybe upper 80s. Nope. He was registering in the 70s. I did CoughAssist and suctioned repeatedly and only got him "stablized" into the mid-80s. My dear friend, Cathy, got to make the 911 call that time.
The third ER visit Neil has told you all about in his post. Will it be the last trip to the ER? Probably not. As his SMA progresses, all of Oliver's muscles will continue to get weaker....including the ones used to breath and to cough. In spite of all of our "drama", we consider ourselves very fortunate. The only hospitalization Ollie has had was for his g-tube and Nissen surgery. And, so far, he's not had a collapsed lung. Many families are not as lucky.
Tuesday, June 2, 2009
For Ollie's New Friend - Mackinley
Late last month, our neurologist, Dr. Smith, put us in touch with a local family whose son, Mackinley, had just been diagnosed with Type I SMA. He turned 4 months old on Sunday. And, on Friday, when Ollie was at WakeMed ER, Mack was at Duke's ER.
Mackinley has been admitted and is being monitored by the same doctors that Oliver sees - Dr. Kravitz (pulmonologist) and Dr. Smith. Mack will even have his g-tube surgery done by Dr. Rice, the same surgeon that did Ollie's surgery. His surgery date was moved up to next week from late June .
Neil and I feel for Mack and his parents and all of his family. These are tough decisions to make. So, please, pray for Mackinley as you have for Oliver.
Mackinley has been admitted and is being monitored by the same doctors that Oliver sees - Dr. Kravitz (pulmonologist) and Dr. Smith. Mack will even have his g-tube surgery done by Dr. Rice, the same surgeon that did Ollie's surgery. His surgery date was moved up to next week from late June .
Neil and I feel for Mack and his parents and all of his family. These are tough decisions to make. So, please, pray for Mackinley as you have for Oliver.
Monday, June 1, 2009
ER #3
Friday (5/29) proved to be an eventful day, but not in a good way. I arrived home a little early so that Bekka could head out to an appointment. I'd only been home a few minutes when Ollie's sats begin dropping. They very quickly descended into the 70s. Vigorous suction and cough assist managed to get him into the low 80s, but no higher. When he dropped into the 60s before bouncing back into the 80s and after we had been at this for several minutes, we made the call to 911.
By the time the paramedics were here, he was back to around 90, but still sounded horrible. They gave him a hit of supplemental oxygen and we headed out the door. Mom loaded up with Ollie into the ambulance and I followed a little bit later with some of the necessary bags.
By the time, we were all at the hospital and in an ER bay, he seemed to be doing really well. In fact, they were drawing up the discharge papers when his sats crashed again. We got his numbers back up pretty quickly, but his heart rate remained elevated. This is always a sure sign that he is still experiencing respiratory discomfort, even if his sats are in a more normal range.
We requested they send in a respiratory therapist to do deep suctioning. Several rounds of this brought up a large amount of very, very thick (but clear!) mucus. He began to improve slowly and Bekka and I were having discussions with the Doc about admission vs. going on home. The decision was not an easy one and they let us continue hanging out in the ER while we made the decision. Pretty soon, he began to perk up to normal Ollie mode and grinned at Daddy! We knew then we could head home.
In the meantime, members of the WakeMed branch of the Ollie fan club came by to see him. I don't think any parent wants to be a "regular" at their local ER, but it's a comforting feeling to know the nurses like your little fella so much they go out of their way to visit. We've been so impressed with our experiences at WakeMed and with Wake County EMS. We can't begin to offer enough praise for their professionalism AND their compassion.
As of now, we have backed off his Robinul dose (though not completely, as that is not a tenable situation) and are being even more vigilant.
By the time the paramedics were here, he was back to around 90, but still sounded horrible. They gave him a hit of supplemental oxygen and we headed out the door. Mom loaded up with Ollie into the ambulance and I followed a little bit later with some of the necessary bags.
By the time, we were all at the hospital and in an ER bay, he seemed to be doing really well. In fact, they were drawing up the discharge papers when his sats crashed again. We got his numbers back up pretty quickly, but his heart rate remained elevated. This is always a sure sign that he is still experiencing respiratory discomfort, even if his sats are in a more normal range.
We requested they send in a respiratory therapist to do deep suctioning. Several rounds of this brought up a large amount of very, very thick (but clear!) mucus. He began to improve slowly and Bekka and I were having discussions with the Doc about admission vs. going on home. The decision was not an easy one and they let us continue hanging out in the ER while we made the decision. Pretty soon, he began to perk up to normal Ollie mode and grinned at Daddy! We knew then we could head home.
In the meantime, members of the WakeMed branch of the Ollie fan club came by to see him. I don't think any parent wants to be a "regular" at their local ER, but it's a comforting feeling to know the nurses like your little fella so much they go out of their way to visit. We've been so impressed with our experiences at WakeMed and with Wake County EMS. We can't begin to offer enough praise for their professionalism AND their compassion.
As of now, we have backed off his Robinul dose (though not completely, as that is not a tenable situation) and are being even more vigilant.
Saturday, May 23, 2009
Robinul to the Rescue (so far)
This past week we began treating Oliver with Robinul in the hope of controlling his increasingly high secretion volume as we had gotten to the point of hourly suctioning on bad days. Robinul is a very powerful drug with numerous side-effects and some patients tolerate it better than others. In some SMA cases, you get only side-effects and no secretion reduction.
It's normally in tablet or inject-able form - needless to see, we aren't giving the poor little guy twice daily injections! Instead, a higher dose of the inject-able form is given via the g-tube.
So far (fingers crossed), he has tolerated treatment well. His secretion volume is way down, and while mucus is thicker, it's not so thick that cough assist and suction hasn't been able to remove it. In addition, he's not been constipated (one of the bigger worries).
We hope this response continues as it's greatly improved Ollie's (and mommy and daddy's) quality of life in a short time frame.
It's normally in tablet or inject-able form - needless to see, we aren't giving the poor little guy twice daily injections! Instead, a higher dose of the inject-able form is given via the g-tube.
So far (fingers crossed), he has tolerated treatment well. His secretion volume is way down, and while mucus is thicker, it's not so thick that cough assist and suction hasn't been able to remove it. In addition, he's not been constipated (one of the bigger worries).
We hope this response continues as it's greatly improved Ollie's (and mommy and daddy's) quality of life in a short time frame.
Carrier Confirmation
Some of you may be aware that SMA is usually an autosomal recessive disease, meaning that both parents must be carriers and that any child produced by those parents has a 25% chance of having the disease. There is a small chance that only the mother is a carrier (ala Hemophilia) and we needed to understand what category we fit in.
Recent testing confirmed that both Rebekka and myself are carriers. What does this mean? For one, it means that immediate family members thinking about having children need to be tested and if they are positive so do their spouses. It also means that if we choose to have more children, it will likely have to be through in vitro procedures as they can test embryos to about 98% accuracy to determine if the SMA gene deletion is present.
These aren't easy things to find out, but it's critical if we are to make future decisions.
Bekka and I have also become passionate about pre-pregnancy screening. As it stands right now, Cystic Fibrosis is the only disease routinely screened when most couples are thinking about having children. Even then, not all doctors advise their patients to get screened (a travesty if you ask me). SMA is an even greater mystery to most physicians. Many know nothing about it and it's prevalence is beginning to look even higher than CF.
We strongly think, no we KNOW, anyone thinking about pregnancy should be screened. There is no real treatment for SMA. Genetic testing and prevention is the only means for parents to avoid the heartbreak of this terrible disease.
Recent testing confirmed that both Rebekka and myself are carriers. What does this mean? For one, it means that immediate family members thinking about having children need to be tested and if they are positive so do their spouses. It also means that if we choose to have more children, it will likely have to be through in vitro procedures as they can test embryos to about 98% accuracy to determine if the SMA gene deletion is present.
These aren't easy things to find out, but it's critical if we are to make future decisions.
Bekka and I have also become passionate about pre-pregnancy screening. As it stands right now, Cystic Fibrosis is the only disease routinely screened when most couples are thinking about having children. Even then, not all doctors advise their patients to get screened (a travesty if you ask me). SMA is an even greater mystery to most physicians. Many know nothing about it and it's prevalence is beginning to look even higher than CF.
We strongly think, no we KNOW, anyone thinking about pregnancy should be screened. There is no real treatment for SMA. Genetic testing and prevention is the only means for parents to avoid the heartbreak of this terrible disease.
Monday, May 18, 2009
Fundraising Update
Wow.
I'm pretty much speechless.
The yard sale and bake sale at Durant Road Preschool raised over $1,000! Thank you so very much to each and every person involved in the fundraiser. Oliver attended Durant Road Preschool until his diagnosis made it unwise to continue at day care. Many teachers, assistants, parents and other folks that we don't even know helped to make this a very successful event.
We can not begin to tell you how much this means to us, how much we appreciate this and how thankful we are for the support from our community.
And this is not the only fundraising event for our dear little Oliver.
Wednesday, May 20, 2009 - 7pm
Entrees4U at Poyner Place Shopping Center - Raleigh, NC
lizajane baby Trunk Show
Saturday, June 6, 2009 - 2pm until 6pm
Stewart Simmons Volunteer Fire Dept - Deep Gap, NC
191 Jakes Mountain Road
Spaghetti Dinner & Raffle
Thank you so very, very much!
I'm pretty much speechless.
The yard sale and bake sale at Durant Road Preschool raised over $1,000! Thank you so very much to each and every person involved in the fundraiser. Oliver attended Durant Road Preschool until his diagnosis made it unwise to continue at day care. Many teachers, assistants, parents and other folks that we don't even know helped to make this a very successful event.
We can not begin to tell you how much this means to us, how much we appreciate this and how thankful we are for the support from our community.
And this is not the only fundraising event for our dear little Oliver.
Wednesday, May 20, 2009 - 7pm
Entrees4U at Poyner Place Shopping Center - Raleigh, NC
lizajane baby Trunk Show
Saturday, June 6, 2009 - 2pm until 6pm
Stewart Simmons Volunteer Fire Dept - Deep Gap, NC
191 Jakes Mountain Road
Spaghetti Dinner & Raffle
Thank you so very, very much!
Thursday, May 14, 2009
Wedding
Our very, very dear friends, Dave & Amanda, are getting married THIS SATURDAY! We can hardly wait! Amanda is also a blogger and posted a beautiful piece about Oliver recently. She is also the Amanda that has taken so many wonderful photos of our dear little boy.
A hearty CONGRATULATIONS to Dave & Amanda!
Best wishes for many, many happy years of marriage!
N & B & Ollie three
A hearty CONGRATULATIONS to Dave & Amanda!
Best wishes for many, many happy years of marriage!
N & B & Ollie three
Upcoming Fundraising Events
We are so fortunate. So many people have reached out to Ollie and have helped raise funds for his care. We can not begin to thank everyone for this. We are touched and humbled.
Some of the upcoming fundraising events include:
Saturday, May 16, 2009 - 8am - noon
Durant Road Preschool
Yard Sale and Bake Sale
Wednesday, May 20, 2009 - 7pm
Entrees4U at Poyner Place Shopping Center
lizajane baby Trunk Show
There's even a Spaghetti Dinner planned near where Ollie's Nana and Pawpaw live! We'll update you as soon as we have more information.
Again, THANK YOU from all three of us but especially Ollie!
Some of the upcoming fundraising events include:
Saturday, May 16, 2009 - 8am - noon
Durant Road Preschool
Yard Sale and Bake Sale
Wednesday, May 20, 2009 - 7pm
Entrees4U at Poyner Place Shopping Center
lizajane baby Trunk Show
There's even a Spaghetti Dinner planned near where Ollie's Nana and Pawpaw live! We'll update you as soon as we have more information.
Again, THANK YOU from all three of us but especially Ollie!
Friday, May 8, 2009
Jr Pavement Engineer
Neil had a conference in Wilmington, NC, at the end of February. (It was pretty scaled back considering the current economic situation. Even so, the Raleigh ABC affiliate ran an "expose'" of the DOT's "wastefulness" and such. Pretty comical, actually.) As ya'll can imagine, Ollie was a HUGE hit. He was promoted to Jr. Pavement Engineer - complete with badge and traffic barrel! During the vendor breaks, there were arguments as to which table Ollie was allowed to set up since he attracted quite a crowd. I finally stated that we would charge $100 per half hour and rotate around to the various tables! Ollie and I had a nice mini-vacation while Daddy worked.
Quantity over Quality...
Sorry about the lack of posts recently. I'm gonna give you several short posts over the next few days in an attempt to redeem myself. I only promise quantity, not quality. =)
We have our photo shoot schedule with Bianca at A Moment Like This - May 20th. I'm really looking forward to it! We'll do some family portraits as well as some just Oliver shots.
That's all for now, but check back often.
We have our photo shoot schedule with Bianca at A Moment Like This - May 20th. I'm really looking forward to it! We'll do some family portraits as well as some just Oliver shots.
That's all for now, but check back often.
Thursday, May 7, 2009
Friday, April 24, 2009
A Quick Update
Hey folks,
Due to the lack of recent posts, we've had a few queries and just wanted everyone to know that Ollie is doing OK. He's generally been great since the ER trip - but we've been extra vigilant.
The pulmonologist thinks he had a cold for a couple of weeks which lead to the excessive and thicker secretions that led to the ER. Post ER, it was a bit rough with constant cough assist and suction for about a week. My poor sister happened to be here helping out during the last few days and can attest to the challenge of keeping him clear. She did a wonderful job with her favorite nephew ;)
Overall, he's been breathing and sleeping well. He did give Bekka a small scare the other day, but it was NOTHING like the day of the ER trip AND she had all the equipment since she was at home. Being SuperMom, she took care of everything. She was a little "nerve-racked" by the time I got home, but little guy was doing great. It's amazing what you can do when you have to. It's also amazing how quick Ollie is to flash a smile even after being tortured with his equipment. He's such a forgiving and happy little fellow - I think we could all learn a lesson from that.
We *promise* we'll get new pics up on Picasa soon - we have a few exceptionally cute ones (but don't we always).
Due to the lack of recent posts, we've had a few queries and just wanted everyone to know that Ollie is doing OK. He's generally been great since the ER trip - but we've been extra vigilant.
The pulmonologist thinks he had a cold for a couple of weeks which lead to the excessive and thicker secretions that led to the ER. Post ER, it was a bit rough with constant cough assist and suction for about a week. My poor sister happened to be here helping out during the last few days and can attest to the challenge of keeping him clear. She did a wonderful job with her favorite nephew ;)
Overall, he's been breathing and sleeping well. He did give Bekka a small scare the other day, but it was NOTHING like the day of the ER trip AND she had all the equipment since she was at home. Being SuperMom, she took care of everything. She was a little "nerve-racked" by the time I got home, but little guy was doing great. It's amazing what you can do when you have to. It's also amazing how quick Ollie is to flash a smile even after being tortured with his equipment. He's such a forgiving and happy little fellow - I think we could all learn a lesson from that.
We *promise* we'll get new pics up on Picasa soon - we have a few exceptionally cute ones (but don't we always).
Saturday, April 11, 2009
Ollie had a two-thirds Birthday!
It's hard to believe that it's been 8 months since our beautiful baby boy was born!
Many of our closest friends and just about the entire Wolftrap Road cul-de-sac came out on Sunday (4/5) to celebrate this milestone in Ollie's life with us. Robin made a cute little Easter Bunny cake and the little guy racked up several gifts. It was a pretty big party...
Thanks so much to everyone that came out, it was wonderful to share this day!
Many of our closest friends and just about the entire Wolftrap Road cul-de-sac came out on Sunday (4/5) to celebrate this milestone in Ollie's life with us. Robin made a cute little Easter Bunny cake and the little guy racked up several gifts. It was a pretty big party...
Thanks so much to everyone that came out, it was wonderful to share this day!
Ollie Goes to the ER
So little man gave us a scare this week.
AND had his first ambulance ride.
Around 3:20pm on Wednesday (4/8) I see that Bekka is ringing my cell, never expecting that she's about to say "Ollie is in distress and the pediatrician's office has called an ambulance".
She had taken little guy to get his last RSV shot. By the time she arrived at the pediatrician's office, he was clearly having difficulty breathing. The staff at the office (they really are wonderful!) jumped right into action and began suctioning to try to remove secretions and mucus. Unfortunately, it just wasn't really helping and they ended up calling an ambulance.
I met Bekka at the WakeMed Children's ER around 4. We immediately requested a cough assist as it is a highly effective device for removing mucus plugs. Luckily, before it even arrived Bekka and I managed to get the vast majority of the mucus plug out. Over the next few hours, they took X-rays and blood samples to make sure he was OK and we did several rounds of cough assist and suctioning to try and clear up any lingering issues.
We managed to leave at 8:30pm or so and Ollie has been doing well since then.
Ollie, Bekka and I want to send a big thanks to the staff at Raleigh Pediatrics, the fantastic fire and EMS personnel and the ER staff at WakeMed. What could've been a nerve-wracking situation was kept calm and cool by everyone involved.
AND had his first ambulance ride.
Around 3:20pm on Wednesday (4/8) I see that Bekka is ringing my cell, never expecting that she's about to say "Ollie is in distress and the pediatrician's office has called an ambulance".
She had taken little guy to get his last RSV shot. By the time she arrived at the pediatrician's office, he was clearly having difficulty breathing. The staff at the office (they really are wonderful!) jumped right into action and began suctioning to try to remove secretions and mucus. Unfortunately, it just wasn't really helping and they ended up calling an ambulance.
I met Bekka at the WakeMed Children's ER around 4. We immediately requested a cough assist as it is a highly effective device for removing mucus plugs. Luckily, before it even arrived Bekka and I managed to get the vast majority of the mucus plug out. Over the next few hours, they took X-rays and blood samples to make sure he was OK and we did several rounds of cough assist and suctioning to try and clear up any lingering issues.
We managed to leave at 8:30pm or so and Ollie has been doing well since then.
Ollie, Bekka and I want to send a big thanks to the staff at Raleigh Pediatrics, the fantastic fire and EMS personnel and the ER staff at WakeMed. What could've been a nerve-wracking situation was kept calm and cool by everyone involved.
Friday, April 3, 2009
How You Can Help Ollie
Many people have asked us how they can help. With the encouragement of family and friends, we have opened an account at the State Employees' Credit Union for Oliver's benefit. Below is the information that our wonderful friends and neighbors have compiled to aid us in this endeavor. Thank you all so very much!
Neil and I intend to use these funds to help cover Oliver's medical expenses including such things as doctor's visits, durable medical equipment, and medical supplies. Any additional funds will be donated to Families of Spinal Muscular Atrophy, the Muscular Dystrophy Association, or Duke Children's Hospital and Health Center.
Thank you again!
Imagine if soon after your first child was born you were told he or she had an incurable genetic disease which would undoubtedly take his or her life before their 2nd birthday. My friends, Neil and Rebekka Mastin who reside here in Raleigh, are faced with this tragic reality. Their son, Oliver was diagnosed at two months with Spinal Muscular Atrophy (SMA), Type I, the most aggressive form of this genetic disease. Translation: “Ollie”, as his friends and family have come to know him, at the age of eight months has been given no more than a year to live. The slow progression of muscle degeneration that began in his legs when he was two months is quickly overtaking him, and he will eventually suffer respiratory failure.
I would like you to consider giving to a fund that has been established to help pay for the monthly use of critical and expensive medical equipment that will make Ollie comfortable in his final months. Ollie’s parents are working people just like you and me. His Mom’s insurance coverage for him has been salvaged as she continues to work part-time. However, the insurance has certain restrictions that disallow coverage for certain medical expenses.
A small group of Neil and Rebekka’s friends and neighbors have created this communication so that Ollie’s short life can be celebrated rather than endured. Time is expiring and the needs are acute. Please consider giving something today. Whatever amount you can give will be appreciated. What matters most is that we send a clear message of love and hope to Ollie. As he struggles to take his final tiny breaths of life, we want his parents to feel relieved of any unnecessary financial burdens and be able to comfort him in so much as is possible.
Thank you so much in advance for your gift. You may send checks for deposit through the mail or deposit checks or cash in person at any State Employees' Credit Union.
State Employees' Credit Union
6320 Capital Blvd., Ste 101 Raleigh, NC 27616
Phone: (919) 871-0450 Fax: (919) 790-0305
Please make checks payable to Oliver Mastin.
The Credit Union will ensure that the check is deposited into the proper account.
To learn more about SMA visit:
http://www.curesma.org
To help in other ways, contact Robin Banker at
robinbanker@gmail.com
And continue to follow Ollie’s story at
http://olliestale.blogspot.com/
“Hearing a diagnosis of something like SMA is beyond devastating. Life becomes compressed and literally day to day. Every little milestone is magnified a thousand times and every little cough a million. Lucky for us, Oliver has a million candle-power smile that turns on at the drop of a hat that can light up anyone's bad day. Maybe it's because his time on earth will be short, but he seems to burn all the brighter for it.”
Neil Mastin
Neil and I intend to use these funds to help cover Oliver's medical expenses including such things as doctor's visits, durable medical equipment, and medical supplies. Any additional funds will be donated to Families of Spinal Muscular Atrophy, the Muscular Dystrophy Association, or Duke Children's Hospital and Health Center.
Thank you again!
Monday, March 30, 2009
Fingers Crossed!
We have applied for the CAP-C program which should get us Medicaid assistance for Oliver's medical bills - including equipment. While my insurance is quite good all things considered, it has a "durable medical equipment" (DME) cap of $700 a year. We will max out our DME coverage early next month. Then we'll be responsible for 100% of the cost - currently around $650 a month.
Cross your fingers that CAP-C approves us and moves us to (near) the top of the wait list! Oliver is considered "medically fragile" and his condition has changed (g-tube feeds only). Hopefully that will help.
Cross your fingers that CAP-C approves us and moves us to (near) the top of the wait list! Oliver is considered "medically fragile" and his condition has changed (g-tube feeds only). Hopefully that will help.
Tuesday, March 24, 2009
Silly Ollie!
Since Ollie's two bottom teeth broke through, he hasn't been sleeping as well. A couple of nights ago I rocked him for about an hour in the middle of the night. If I tried to get up to lay him in his crib, he'd scrunch up his brow and fuss at me.
Well, last night he slept much better. No middle of the night awakenings. However, at 6am, he decided he wanted to get out of the crib. He wasn't sleepy anymore. He was ready to be up and play. Mama, on the other hand, was not. (I have mentioned that I am not a morning person, right?)
So, Ollie and I headed to the guest bed. (Daddy needs his sleep so that he can go to work and earn money so that we can be denied Social Security and Medicaid.) Grandpa and Grandma sent Ollie a portable DVD player. Ollie watched Baby Einstein. And Mama got some much needed sleep.
Ah, technology...ya gotta love it!
Well, last night he slept much better. No middle of the night awakenings. However, at 6am, he decided he wanted to get out of the crib. He wasn't sleepy anymore. He was ready to be up and play. Mama, on the other hand, was not. (I have mentioned that I am not a morning person, right?)
So, Ollie and I headed to the guest bed. (Daddy needs his sleep so that he can go to work and earn money so that we can be denied Social Security and Medicaid.) Grandpa and Grandma sent Ollie a portable DVD player. Ollie watched Baby Einstein. And Mama got some much needed sleep.
Ah, technology...ya gotta love it!
Friday, March 20, 2009
We need a bigger house....
Don't get me wrong. I'm grateful for all of the supplies that are arriving on my doorstep - bottles of formula, feeding bags, tubing, etc. But it all arrives in bulk; one month's worth of supplies at a time.
Our house was "cozy" before Oliver arrived. For nearly nine months, we worked at cleaning out closets. We reorganized to make more room. We bought a small storage shed. And when Oliver arrived in August, our house became a little "cramped" with teeny clothes, play mats, swings, diapers and such.
Then, in December, the equipment began arriving. At first, just a CoughAssist and a pulse oximeter. Neither had much in the way of additional supplies (or "consumables" as the insurance company likes to call them). Then we got a couple good-sized boxes of SimplyThick to add to the breast milk. Then we switched to formula with the SimplyThick added.
In February, the newest addition to our equipment family arrived: a nebulizer. And several little boxes of albuterol to go with it. A mask or two. Some tubing. A makeshift adapter with a T-connection so Ollie could have his treatments while lying down. We'd gone from a little cramped to surrendering the coffee table to the equipment family.
We got home from the hospital on Tuesday with a couple of patient belonging bags with 5mL and 3mL syringes to flush the tubing for his feeds. Several Y-site extension tubes to make it easier to administer medicines via g-tube. A couple of 60mL syringes to vent his g-tube and give feeds via gravity. A few bags to hang feeds in case we got a pump.
Then Wednesday rolls around. The home medical equipment and supply company delivers a Kangaroo Joey feeding pump with small backpack. More feed bags. A pole to hang the feeds and mount the pump.
Today, a box of 30 feed bags arrives. Along with more Y-site extensions. Plus four cases of ready to feed formula. And one can of powdered formula. The tubing that runs from Oliver's Bard button to the Y-site extension tube hasn't even arrived yet.
Our house was "cozy" before Oliver arrived. For nearly nine months, we worked at cleaning out closets. We reorganized to make more room. We bought a small storage shed. And when Oliver arrived in August, our house became a little "cramped" with teeny clothes, play mats, swings, diapers and such.
Then, in December, the equipment began arriving. At first, just a CoughAssist and a pulse oximeter. Neither had much in the way of additional supplies (or "consumables" as the insurance company likes to call them). Then we got a couple good-sized boxes of SimplyThick to add to the breast milk. Then we switched to formula with the SimplyThick added.
In February, the newest addition to our equipment family arrived: a nebulizer. And several little boxes of albuterol to go with it. A mask or two. Some tubing. A makeshift adapter with a T-connection so Ollie could have his treatments while lying down. We'd gone from a little cramped to surrendering the coffee table to the equipment family.
We got home from the hospital on Tuesday with a couple of patient belonging bags with 5mL and 3mL syringes to flush the tubing for his feeds. Several Y-site extension tubes to make it easier to administer medicines via g-tube. A couple of 60mL syringes to vent his g-tube and give feeds via gravity. A few bags to hang feeds in case we got a pump.
Then Wednesday rolls around. The home medical equipment and supply company delivers a Kangaroo Joey feeding pump with small backpack. More feed bags. A pole to hang the feeds and mount the pump.
Today, a box of 30 feed bags arrives. Along with more Y-site extensions. Plus four cases of ready to feed formula. And one can of powdered formula. The tubing that runs from Oliver's Bard button to the Y-site extension tube hasn't even arrived yet.
Wednesday, March 18, 2009
Happiness
We are home! Oliver was discharged last night around 6:30pm.
Home again, home again, jiggity jig!
It's funny how much I thought I missed my bed, but it was really my pillows and my sheets that I missed more!
We are soooooo happy to be home!
Home again, home again, jiggity jig!
It's funny how much I thought I missed my bed, but it was really my pillows and my sheets that I missed more!
We are soooooo happy to be home!
Tuesday, March 17, 2009
Disappointment
Oliver had his swallow study done at 3pm. He got about 4 bites of applesauce mixed with barium (so we could watch on the videofluoroscope). The speech therapist stopped the feeding and began to massage his cheeks and throat. And then she stopped the study all together.
SMA causes muscles to weaken over time. Muscles like those used to swallow. Oliver would try to swallow the applesauce, but a lot of "residue" would remain at the back of his throat. When he would inhale a breath, the residue would be sucked into his windpipe and hit the top of his vocal cords. Any residue that enters the windpipe is considered aspirated and, if it enters the lungs, can cause pneumonia.
The recommendation from the speech therapist was to discontinue oral feeds. She was very sympathetic and told me how much she hated having to tell me that news. We watched the recorded video together and she showed me where the food had penetrated the windpipe as well as where food had entered Oliver's nasal passages. I asked her if she thought this was due to the Nissen or the post-op or SMA. She didn't even hesitate. It's the SMA progressing.
That was the first real blow since we've been in the hospital. Everything had been progressing nicely. And our goal had always been to continue oral feeds after the g-tube surgery. Especially since Ollie loves sweet potatoes and blueberry applesauce! Instead, SMA has stripped away another layer of normalcy.
SMA causes muscles to weaken over time. Muscles like those used to swallow. Oliver would try to swallow the applesauce, but a lot of "residue" would remain at the back of his throat. When he would inhale a breath, the residue would be sucked into his windpipe and hit the top of his vocal cords. Any residue that enters the windpipe is considered aspirated and, if it enters the lungs, can cause pneumonia.
The recommendation from the speech therapist was to discontinue oral feeds. She was very sympathetic and told me how much she hated having to tell me that news. We watched the recorded video together and she showed me where the food had penetrated the windpipe as well as where food had entered Oliver's nasal passages. I asked her if she thought this was due to the Nissen or the post-op or SMA. She didn't even hesitate. It's the SMA progressing.
That was the first real blow since we've been in the hospital. Everything had been progressing nicely. And our goal had always been to continue oral feeds after the g-tube surgery. Especially since Ollie loves sweet potatoes and blueberry applesauce! Instead, SMA has stripped away another layer of normalcy.
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