believe me.
I really do.
After waiting at the hospital for quite some time, the doctor came in with the x-rays they had just taken. He met our eyes with kindness, almost sympathetic kindness, and said that the cast isn't holding. (I tear up just typing that.) Jack's spine has deteriorated from 38* in the cast to 55* in the cast in seven weeks.
The day he was casted, the curve measured 64*. Again, there is always some margin of error, some variances of positioning and who does the measurements. But, this number should not be so rapidly growing. We know that he should have some sort of stabilization in the cast. We know for certain that this is not good.
We were told this cast needs to come off right away, because, basically, it's useless. It isn't even holding the correction and his back will continue to get worse in this one. Our best hope is to have this one removed and repeat the procedure ahead of schedule, in mid-October, and hope that we can get down below 30* this second time. Apparently, the doctor isn't feeling very optimistic about Jack's progress and doesn't think that casting is going to be the answer for him. He said we can continue to do this until Jack is old enough for surgery. It was obvious that if we are to see any success in the casting, it will not be this year. We now expect that he will need a new cast every 8-10 weeks and that we will be, essentially, traveling every month and this will continue for two years before we may know anything definitive.
In the meantime, we will continue because there is nothing else we can do. We are disheartened, demoralized. I was so confident going into this. I didn't even get nervous driving up there - I just KNEW they were going to say he was fine. So many people have been praying for him, I just knew he'd be okay. Those words fell upon us and the air instantly shifted.
We had no desire to be there anymore and just wanted to be back in our home. We drove back, the first two hours of which were total gridlock. We managed to travel twenty-five miles in that span of time. When we finally got home it was very late. We were physically and emotionally exhausted - the tension in the car the rest of the way home was palpable. It is so easy to blame ourselves, blame eachother when things do not go as expected.
Today, his future is uncertain once again. We are now scrambling to pay for an unexpected trip back in a short amount of time and praying for resolution.
There is no sense or justice in this.
Thursday, September 27, 2007
Monday, September 24, 2007
A Heavy Heart
You might remember the other mom I met in Chicago, whose son has been casted seven times. She's been a great shoulder to lean on and has really held my hand through this process.
Her sweet little boy likely has a connective tissue disorder, that causes his spine to continue curving despite best efforts. For more than a year he's bounced back, but went down when in the cast, so it was at least stabilizing him. Well, his Mom emailed last night and he is going to have surgery after the first of the year. I'm so heartbroken for her. His curve progressed in the cast. Even though the best person for the job performed the casting, his little body just found a way to go out of alignment.
As sad as I am for them, it also burst my bubble about Jack's casting. It's been a very hard seven weeks and sometimes I wonder how we'll get through it for a year. On those days, the thing that keeps me going is the knowledge that this is better than surgery - that after this year, everything will be over and done with and he will never have to have growth rods. The difficulty of these last seven weeks has been tempered by the fact that his curve went so far down. How have I disregarded the fact that we will not see improvement, but in fact, his numbers will be worse when we go in for his follow-up on Wednesday? Ignorance is bliss.
The email also informed me that our doctor is scheduling re-castings the first week of October. Even if that date is pushed back another week for us, that's so soon. I'm not prepared for that - emotionally, financially. I check the budget every day, trying to find more wiggle room, trying to adjust our spending, cutting our grocery budget, whatever I can do to make this happen and it's beginning to be a losing battle. I had to buy Jack a new carseat because he's on the very edge of the top of his straps already. His torso is almost 16" long in the cast, when you add in the height of his shoulder straps. He has to have something taller or he'll never fit in it when he gets re-casted. So, we had to get something more accomodating, and, of course, more expensive.
I'm feeling defeated, tapped-out. I'm not myself these days. The stress is taking its toll on us, and Jack not sleeping just makes the issue even worse. Last night he bounced from the side of the cabinets onto his face, flat on the ceramic tile. I can't see him hurting anymore. This is so unfair! What could he have ever done to deserve this? He's a baby. There is no sense - no justice - in this.
Her sweet little boy likely has a connective tissue disorder, that causes his spine to continue curving despite best efforts. For more than a year he's bounced back, but went down when in the cast, so it was at least stabilizing him. Well, his Mom emailed last night and he is going to have surgery after the first of the year. I'm so heartbroken for her. His curve progressed in the cast. Even though the best person for the job performed the casting, his little body just found a way to go out of alignment.
As sad as I am for them, it also burst my bubble about Jack's casting. It's been a very hard seven weeks and sometimes I wonder how we'll get through it for a year. On those days, the thing that keeps me going is the knowledge that this is better than surgery - that after this year, everything will be over and done with and he will never have to have growth rods. The difficulty of these last seven weeks has been tempered by the fact that his curve went so far down. How have I disregarded the fact that we will not see improvement, but in fact, his numbers will be worse when we go in for his follow-up on Wednesday? Ignorance is bliss.
The email also informed me that our doctor is scheduling re-castings the first week of October. Even if that date is pushed back another week for us, that's so soon. I'm not prepared for that - emotionally, financially. I check the budget every day, trying to find more wiggle room, trying to adjust our spending, cutting our grocery budget, whatever I can do to make this happen and it's beginning to be a losing battle. I had to buy Jack a new carseat because he's on the very edge of the top of his straps already. His torso is almost 16" long in the cast, when you add in the height of his shoulder straps. He has to have something taller or he'll never fit in it when he gets re-casted. So, we had to get something more accomodating, and, of course, more expensive.
I'm feeling defeated, tapped-out. I'm not myself these days. The stress is taking its toll on us, and Jack not sleeping just makes the issue even worse. Last night he bounced from the side of the cabinets onto his face, flat on the ceramic tile. I can't see him hurting anymore. This is so unfair! What could he have ever done to deserve this? He's a baby. There is no sense - no justice - in this.
Thursday, September 20, 2007
Indian Summer
The Indian Summer is upon is. Or, is it? The weather was positively gorgeous this past weekend - just in time for Madison's 10th birthday party. How is it possible that I have a child who is a decade old? Where has the time gone? The kids played outside all day, relishing the 70-degree weather. We had an entire week of open windows and brisk fall air to rush through the house and push out the recirculated air conditioning we've been breathing for months.
This week we're preparing for our second trip with Jack. His follow-up appointment is six days away and while I'm anxious to see if the cast is holding his curve, I'm also very nervous. I don't know why. Really nothing to be nervous about, this visit.
Speaking of visits, will the praying group of you out there please remember Heather and Olivia next week, too. Heather is the mom who founded ISOP (Infantile Scoliosis Outreach Program) and THE reason Jack is in a cast today. Her daughter is having surgery next week and I know it's a very difficult week for them. I belive she's having VEPTR (which is like a titanium rib that expands the body's length and helps the spine to straighten). She's 9 and a sweet little girl who has been through a lifetime of HALO traction and procedures - twice in her life she has had curves over a hundred degrees.
Anyway, there's a lot of nervous energy floating around on the group and I've picked up a bit of it, too. I think it is just the reality of scheduling the next cast while we're there. Knowing he'll have to endure another bout of anesthesia, which was awful last time. Although casting is a non-surgical approach, it is not without risk and we worry every time he has exposure to radiation and anesthesia. But, we have to put it in the hands that are in control.
This week a wonderful mom I know, Allison, made Jack a little hoodie. He's so hard to dress because the cast makes his body so much wider, but if the collar is too big, it falls over the shoulders. Also, he needs a 3T in torso/length but really an 18/24 months in arms. And, pants - oh - forget about those! I can't get a pair of pants to fit on him. They all fall off. I suspect the cast being covered in duct tape makes it more slippery and that's why they all fall off. A great friend of mine is making him some custom pants and I hope I'll have a good report. Anyway, Allison's hoodie came this week and it's so cute. She did a Dia de Los Muertos embroidery on the pocket and picked out a nice bright stripe for the hood and sleeves.
Oh - and we had some fun with Piper's hair this week. I put little finger curls in it and secured them with a tiny pony before bedtime. This morning - well - I'll let you see the results.
Oh - and because the auto play thing bugs me when I read my posts, I put this one to manual play. I hate when I miss the first four or five pictures because I'm reading. Just click the |> on Madison.
This week we're preparing for our second trip with Jack. His follow-up appointment is six days away and while I'm anxious to see if the cast is holding his curve, I'm also very nervous. I don't know why. Really nothing to be nervous about, this visit.
Speaking of visits, will the praying group of you out there please remember Heather and Olivia next week, too. Heather is the mom who founded ISOP (Infantile Scoliosis Outreach Program) and THE reason Jack is in a cast today. Her daughter is having surgery next week and I know it's a very difficult week for them. I belive she's having VEPTR (which is like a titanium rib that expands the body's length and helps the spine to straighten). She's 9 and a sweet little girl who has been through a lifetime of HALO traction and procedures - twice in her life she has had curves over a hundred degrees.
Anyway, there's a lot of nervous energy floating around on the group and I've picked up a bit of it, too. I think it is just the reality of scheduling the next cast while we're there. Knowing he'll have to endure another bout of anesthesia, which was awful last time. Although casting is a non-surgical approach, it is not without risk and we worry every time he has exposure to radiation and anesthesia. But, we have to put it in the hands that are in control.
This week a wonderful mom I know, Allison, made Jack a little hoodie. He's so hard to dress because the cast makes his body so much wider, but if the collar is too big, it falls over the shoulders. Also, he needs a 3T in torso/length but really an 18/24 months in arms. And, pants - oh - forget about those! I can't get a pair of pants to fit on him. They all fall off. I suspect the cast being covered in duct tape makes it more slippery and that's why they all fall off. A great friend of mine is making him some custom pants and I hope I'll have a good report. Anyway, Allison's hoodie came this week and it's so cute. She did a Dia de Los Muertos embroidery on the pocket and picked out a nice bright stripe for the hood and sleeves.
Oh - and we had some fun with Piper's hair this week. I put little finger curls in it and secured them with a tiny pony before bedtime. This morning - well - I'll let you see the results.
Oh - and because the auto play thing bugs me when I read my posts, I put this one to manual play. I hate when I miss the first four or five pictures because I'm reading. Just click the |> on Madison.
Tuesday, September 11, 2007
Create a memory - vote for us!
You know Jones sodas? The three dollars a bottle, hyper-colored, candy-flavored varieties sold at specialty stores and Panera (that's St. Louis Bread Company to you locals)?
Well, they have the funkiest labels and have new submissions regularly. I couldn't resist uploading a few of Jack (and one of big sister Jamee). Please take a second and vote - wouldn't it be great to see his bottle out on the shelves. It's a real possibility - they have several winners every month that they print, so DO IT! :)
(We don't win anything except the celebrity of being on a Jones bottle - and maybe a submission for Jack's memory box.) I tried to keep the flavors/colors in mind - green apple is shocking green, bright blue, rootbeer, you get the idea.
Blue Bubble Gum
any flavor you like
Green Apple contendor
*our spooky halloween submission for their limited edition label ;)*
Monster Mojito, maybe
Root Beer, anyone?
Orange and Cream, perhaps?
Sunday, September 09, 2007
Thursday, September 06, 2007
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