Re: Bexon update-Joan

[Guest guest]

Thanks Joan! Maybe one day I'll be back. By then they will start charging......NOT gonna do that! TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: Joan Vallee To: infantile_scoliosis Sent: Thu, February 18, 2010 7:16:55 PMSubject: Re: Bexon update

We miss u on FB Tasha.. COME BACK... I enjoyed your daily affirmations. ..lol Joanmom to Hayden 343 degrees down from 62Cast number 3Treated at ish Rite Hospital Dallas, TX

From: Tasha Fontenot <ryanswalkyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thu, February 18, 2010 7:09:01 PMSubject: Re: [infantile_scoliosi s] Bexon update

Heidi,I am so happy to hear the MRI was good results. That is great! Sorry to hear there was no change, but you have the right attitude about it all. The cast is holding him and you are doing the best thing for him. As you know had a very similar experience so I know how you are feeling. 25 degrees is good though! Give it time and keep on going! Glad Bexon had a good time! Miss seeing pictures of him on FB. Thanks for the update...... I have been wondering.

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html

From: NIck Guthe <nickgutheyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Thu, February 18, 2010 6:12:25 PMSubject: [infantile_scoliosi s] Bexon update

Hi Everyone!

Bex is safely in his new COOL black cast! (cast #6). He had anesthesia 2x this week, Monday for his 3rd MRI and today for his 6th cast in almost exactly one year. He did great and his MRI result came back today with NO change in his spinal Syrinx cyst from one year ago!!! That is the best news, it may never grow and it may never cause any neuological problems if we're lucky. We will have to keep watching it, but PHEW!

His X-ray in cast 6 showed basically no change, we once got a number of 21 and last time 22.9/23 degrees, this measured at around 25 degrees. However, our doc looked at all 3 of his last X-rays again and remeasured, and there is a 5-6 degree margin of error each time. He concluded that Bex has basically been holding for the last 3 cast changes, which I know a brace alone at this age would not have achieved.

I remind myself that he was so progressive in his curvature, 61 degrees at 19 months of age, he would be SO much worse right now without this casting method...there is no doubt in my mind we are doing the exact right thing for our child.

We may well have another year of casts, and we are over the hump of expecting each one to be a miracle cure. It is already a miracle that this treatment was available for our boy, and (not that we won't ever have our low moments), we are in it for the long haul and are still very hopeful and optimistic Bex won't need growing rods. Of course, we will do that way down the line if it is the best option.

For now, casts for as long as it is the best treatment for him, followed by bracing to hold the correction. We can do it!!!

Thank you for thinking of Bexon and for your prayers if you prayed! He continues to amaze us. He also made it to the Zoo and the Children's Museum this week and learned to fly a mean paper airplane with Daddy in our hotel room : )

I met a Mom named Tara- we shared a room- her boy got a red cast- hope she joins the group. We also shared a room with a boy named Brenton- he was too sick to get his cast today : ( Both such cutie pies.

Good news on the new doctor doing EDF Mehta casting front- a resident who is almost a doc casted Bex with our Doc D and Mike P., he will be practicing in Denver sonn and he's very nice!!! Rhymes with Miley and his last name completes the sentence "He's lving the life of R-----"

Love,

Heidi, Bexon's Mama, (2 year 7 mos. old, in 6th cast from Salt Lake City Shriners)