Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 ....That is similar to how we feel/felt....we are SO thankful for casting because while it lasted it bought us precious time! Then we went through a denial phase thinking we could just not do anything for awhile and hoping for a miracle. Now since we have an action plan it is becoming more real and I am nervous but fueled with information and strength and knowing we will come out on the other side of this and you and Fin will too!! Joan, thanks so much for your continued support and encouragement. You are so sweet and I hope sharing Matson's story will help in some way. Thanks! Best regards, Mom to Tyler (7), Matson (4), Lily (3) > > > > Subject: Re: Matson > To: infantile_scoliosis > Date: Monday, February 8, 2010, 11:17 AM > > >  > > > > > > > >  > My son will need surgery as well. I don't know why casting isn't working for my child, but he is not getting the correction that most children do. We are trying one more cast and then he will wear a brace to hold him until he is old enough for surgery. I am VERY scared as you are, but if it means my child will be " better " , then I HAVE to do it. I just pray that this next cast is a miracle. Hugs to you and Finn.. >  Joan > mom to Hayden 3 > 43 degrees down from 62 > Cast number 3 > Treated at ish Rite Hospital > Dallas, TX > > > > > > > From: McSheffrey <teresamcsheffrey@ yahoo.com> > To: infantile_scoliosis @yahoogroups. com > Sent: Sun, February 7, 2010 10:13:42 AM > Subject: Re: [infantile_scoliosi s] Matson > >  > > > > Hello, >  > I just wanted to share a thought or two. As some of you may know Finn has been casted for two years now. He has benefited so much from casting and it has allowed him to grow and develop and also reduced his 90 degree curve. The casts have been amazing and he has never had an issue with them. With that being said, Finn was recently accurately diagnosed with the reasons for his scoliosis. Surgery might really be his only option for the future. His spine will most likely always curve. I know the complications of surgery and it terrifies me. Finn just might not have a choice but of course we did not know that when we started casting two years ago and he has benefited so so much over the last two years from casting. I would not have done it differently. I think it is important to be mindful of how we interpret information that we read. I read the statement from the mother, about it being the worst days of their lives, about the terrible pain and I burst into > tears and started having feelings of extreme anxiety. This was not new information to me but it just reiterated my feelings about the potential of surgery and having my son's back cut open and foreign objects placed inside of him. But then I thought about it. This was their experience and we do not know anything else about the situation. Did this child have any other anomalies that contributed to their condition? There are lots of questions to ask. I know that the statement was put their to praise casting, and it should be praised because it is live saving and life altering for our children. I just wanted to say though, if anyone else might have the possibility of surgery after casting, every child and every family has a different experience. To some it might be the best day of their live because it saved their child's life. Maybe it was filled with struggle and heart ache but their child will be alive and thriving because of it and that just made it > the very best day of their lives. >  > , Finn's mom > > > > > > From: NIck Guthe <nickgutheyahoo (DOT) com> > To: infantile_scoliosis @yahoogroups. com > Sent: Sat, February 6, 2010 5:56:19 PM > Subject: [infantile_scoliosi s] Matson > >  > > > I wanted to share this from my friend Steph's Caring Bridge page for her very brave, very adorable son Matson. Casting didn't work out for Matson because of rare complications. Steph writes beautifully and I know that she wants Matson's journey to help other children and families. This was very informative, as well as moving to me. It reminds me why we will do casting as long as it is working for Bex, and increases my gratitude for and ISOP, if that is possible: > > From Steph: > > " One of the main problems with infantile scoliosis is the growth factor....as the kids grow, their curves grow, thus causing a chain reaction of deformity and organ compromise. With adolescent and adult scoliosis patients have reached their maximum growth potential or close to it, their organs have fully developed, and spinal fusion is usually the answer for correcting curves and maintaining them throughout their lifetime. Dealing with these little bodies and still developing organs is a delicate matter. As the mother I spoke to last night said this is a life altering disease, treatment plan, and a very long road. She was very candid in providing me the details of surgery, recovery, rod lengthenings, and complications. She explained that the initial surgery and recovery period were the worst days of all their lives. Their daughter in excruciating pain, unable to move or walk, and so confused. She explained that they have had 4 rods break in her body > since and then subsequently surgically replaced. She has had a very severe infection near the hardware at the top of her spine and will be on antibiotics for the next 6 months. During one lengthening surgery, the tension on the spinal cord was too tight and she was unable to walk and then had to go back into surgery to release some of the tension. Their daughter has had 12 surgeries on her spine and she will be 7 next month. But through it all she said they just keep reminding themselves that no matter how hard it is, if they hadn't gone through all this and continue to go through it, their daughter wouldn't be here at all as her lungs would have already been compromised. All about the perspective! " > > From Heidi- > > Please send good thoughts and if you pray, please add Matson to your prayers!!! He clearly has the most loving mother and family. > >  Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23) > Quote Link to comment Share on other sites More sharing options...
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