Re: SLC - overnight

[Guest guest]

Hi Heidi,

If you ask SLC will allow you to stay at the hotel and not at the hospital the night of the casting (once you have been through the casting process.) For us, It is nicer to be in a quiet hotel, versus a noisy hospital room, not to mention that wonderful vinyl chairbed!

But you are welcome to stay in the hospital if you prefer.

Just talk with the Care Coordinator and tell her that you are interested in a Leave of Absence, versus a Discharge on casting day and then you need to tell the nurse assigned to you. This way you go back to the hotel and then return in the morning for cast adjustments, then the doctor discharges you. They have been trying to work on this, but some nurses aren't doing this. On the last cast one family was discharged and we were given an LOA and we were back at the hotel 3 hours ahead of them! The Care Coordinator said they were working on this issue. Tell Mike you want a Leave of Absence and he will understand.

Good luck with the cast change.

Liz

From: jonahlisa <jonahchimerafilms (DOT) com>Subject: [infantile_scoliosi s] First appt--nervous nellyTo: infantile_scoliosis @yahoogroups. comDate: Monday, April 13, 2009, 10:02 AM

Okay, Jemma has her first appt with a pediatric ortho tomorrow morning at 8:30am at Texas ish Rite in Dallas. She'll be 4 months old next week and, other than the rib hump, appears to be completely normal and healthy.Background: Found rib hump at 3 months. Pediatrician sent us for Xray. It was done supine with hands over head on adult equipment with tech and radiologist inexperienced with this disease. Radiologist read a 34 thoracic curve. We have first opinion at Texas ish Rite and second opinion scheduled for May 6th (unless there's a cancellation and we can get in earlier) at Shriners in SLC. So...I'm very nervous. What are the questions I should be asking so I can check it against the list I've already started? What should I expect or push for at this appointment. I know I may not walk away with a definitive dx but any advice would be

appreciated.

[Guest guest]

Hi Liz,

Thank you, that really helps. We were told we might be able to all go back to the hotel the night the first cast was on, but I didn't want to risk it if there were any problems (there weren't). My husband is a light sleeper who falls asleep easily, I have trouble falling asleep and am a heavy sleeper when I do. For this reason, we decided he would stay in the hospital room- the rules were only one parent could stay. I was devastated to leave my boys, but thought it was the best choice, we are very much "co-parenting".

Long story, but I got lost in SLC in a rental car in the snow that night, got the wrong directions twice, got into a car accident and then almost went down the wrong way on a one way street trying to drive to the hotel! The person I hit in the fender bender said he would fix his own car and not to report it. I think he may not have had insurance. I burst into tears and said my baby was at Shriners, and his 18 year old girlfriend who was dragging on a cig outside of 7-11 threw her arms around me and gave me a big hug. As my Mom said upon hearing this, "there are angels everywhere".

-Heidi

From: jonahlisa <jonahchimerafilms (DOT) com>Subject: [infantile_scoliosi s] First appt--nervous nellyTo: infantile_scoliosis @yahoogroups. comDate: Monday, April 13, 2009, 10:02 AM

Okay, Jemma has her first appt with a pediatric ortho tomorrow morning at 8:30am at Texas ish Rite in Dallas. She'll be 4 months old next week and, other than the rib hump, appears to be completely normal and healthy.Background: Found rib hump at 3 months. Pediatrician sent us for Xray. It was done supine with hands over head on adult equipment with tech and radiologist inexperienced with this disease. Radiologist read a 34 thoracic curve. We have first opinion at Texas ish Rite and second opinion scheduled for May 6th (unless there's a cancellation and we can get in earlier) at Shriners in SLC. So...I'm very nervous. What are the questions I should be asking so I can check it against the list I've already started? What should I expect or push for at this appointment. I know I may not walk away with a definitive dx but any advice would be

appreciated.

[Guest guest]

Best of luck, Krista and family! We hope you have an uneventful trip and the best experience possible.

Warmly,

Heidi

From: jonahlisa <jonahchimerafilms (DOT) com>Subject: [infantile_scoliosi s] First appt--nervous nellyTo: infantile_scoliosis @yahoogroups. comDate: Monday, April 13, 2009, 10:02 AM

Okay, Jemma has her first appt with a pediatric ortho tomorrow morning at 8:30am at Texas ish Rite in Dallas. She'll be 4 months old next week and, other than the rib hump, appears to be completely normal and healthy.Background: Found rib hump at 3 months. Pediatrician sent us for Xray. It was done supine with hands over head on adult equipment with tech and radiologist inexperienced with this disease. Radiologist read a 34 thoracic curve. We have first opinion at Texas ish Rite and second opinion scheduled for May 6th (unless there's a cancellation and we can get in earlier) at Shriners in SLC. So...I'm very nervous. What are the questions I should be asking so I can check it against the list I've already started? What should I expect or push for at this appointment. I know I may not walk away with a definitive dx but any advice would be

appreciated.

[Guest guest]

Heidi,

I never write this but here goes...OMG!! That is nuts! My husband got lost the first night back to the hotel as well....we still get lost, I just pretend not to notice...it's a man thing! Thank you for the wish of...."uneventful"...yes I will go for that every time!! Last time we got back to LAX...my car was gone! It got towed! Nightmare! Major screw up with the DMV and my registration. It was paid, but the tags never got mailed out and the computer was showing something else. Let's put it this way, I am still dealing with the mess! I so hope to be able to post wonderful news.

~Krista

From: jonahlisa <jonahchimerafilms (DOT) com>Subject: [infantile_scoliosi s] First appt--nervous nellyTo: infantile_scoliosis @yahoogroups. comDate: Monday, April 13, 2009, 10:02 AM

Okay, Jemma has her first appt with a pediatric ortho tomorrow morning at 8:30am at Texas ish Rite in Dallas. She'll be 4 months old next week and, other than the rib hump, appears to be completely normal and healthy.Background: Found rib hump at 3 months. Pediatrician sent us for Xray. It was done supine with hands over head on adult equipment with tech and radiologist inexperienced with this disease. Radiologist read a 34 thoracic curve. We have first opinion at Texas ish Rite and second opinion scheduled for May 6th (unless there's a cancellation and we can get in earlier) at Shriners in SLC. So...I'm very nervous. What are the questions I should be asking so I can check it against the list I've already started? What should I expect or push for at this appointment. I know I may not walk away with a definitive dx but any advice would be

appreciated.

[Guest guest]

Krista,

Getting your car towed is always a nightmare! But especially if you've just come back from your child having a medical procedure- I feel your pain ; ) Here's to being able to post wonderful news.

-Heidi

From: jonahlisa <jonahchimerafilms (DOT) com>Subject: [infantile_scoliosi s] First appt--nervous nellyTo: infantile_scoliosis @yahoogroups. comDate: Monday, April 13, 2009, 10:02 AM

Okay, Jemma has her first appt with a pediatric ortho tomorrow morning at 8:30am at Texas ish Rite in Dallas. She'll be 4 months old next week and, other than the rib hump, appears to be completely normal and healthy.Background: Found rib hump at 3 months. Pediatrician sent us for Xray. It was done supine with hands over head on adult equipment with tech and radiologist inexperienced with this disease. Radiologist read a 34 thoracic curve. We have first opinion at Texas ish Rite and second opinion scheduled for May 6th (unless there's a cancellation and we can get in earlier) at Shriners in SLC. So...I'm very nervous. What are the questions I should be asking so I can check it against the list I've already started? What should I expect or push for at this appointment. I know I may not walk away with a definitive dx but any advice would be

appreciated.

[Guest guest]

Yes, ha- the sweet teenage girl with the cig had a face full of pimples and a boyfriend who was at least 10 years older, with a 70's mustache.

I did drive through the Mc's just after that first casting day (and car accident) in QUITE a state, and the lady at the microphone was white haired and around 80 years old- training for the job. She said she "hoped I was enjoying my visit to Salt Lake!" and it was all I could do not to cry on her shoulder and tell her my whole story. I refrained from bleeding on her, luckily, and did make it back to the hotel room in one piece.

On the upside, at least 10 miracles happened in a row to save my baby's spine, so these are very minor compliants by comparison!

-Heidi

From: jonahlisa <jonahchimerafilms (DOT) com>Subject: [infantile_scoliosi s] First appt--nervous nellyTo: infantile_scoliosis @yahoogroups. comDate: Monday, April 13, 2009, 10:02 AM

Okay, Jemma has her first appt with a pediatric ortho tomorrow morning at 8:30am at Texas ish Rite in Dallas. She'll be 4 months old next week and, other than the rib hump, appears to be completely normal and healthy.Background: Found rib hump at 3 months. Pediatrician sent us for Xray. It was done supine with hands over head on adult equipment with tech and radiologist inexperienced with this disease. Radiologist read a 34 thoracic curve. We have first opinion at Texas ish Rite and second opinion scheduled for May 6th (unless there's a cancellation and we can get in earlier) at Shriners in SLC. So...I'm very nervous. What are the questions I should be asking so I can check it against the list I've already started? What should I expect or push for at this appointment. I know I may not walk away with a definitive dx but any advice would be

appreciated.

[Guest guest]

Oh, Liz, you said it. Whew, thank God your Mom is okay!

From: jonahlisa <jonahchimerafilms (DOT) com>Subject: [infantile_scoliosi s] First appt--nervous nellyTo: infantile_scoliosis @yahoogroups. comDate: Monday, April 13, 2009, 10:02 AM

Okay, Jemma has her first appt with a pediatric ortho tomorrow morning at 8:30am at Texas ish Rite in Dallas. She'll be 4 months old next week and, other than the rib hump, appears to be completely normal and healthy.Background: Found rib hump at 3 months. Pediatrician sent us for Xray. It was done supine with hands over head on adult equipment with tech and radiologist inexperienced with this disease. Radiologist read a 34 thoracic curve. We have first opinion at Texas ish Rite and second opinion scheduled for May 6th (unless there's a cancellation and we can get in earlier) at Shriners in SLC. So...I'm very nervous. What are the questions I should be asking so I can check it against the list I've already started? What should I expect or push for at this appointment. I know I may not walk away with a definitive dx but any advice would be

appreciated.

[Guest guest]

Liz,

Two times in a row....OMG!!! Thank God she did not come with! Glad she is on the mend. That tops thinking my car was stolen. This is all so stressful...glad we can look back and shake our heads at how much we all go through for our kids!! Hang in. P.S. the cig made me laugh too! But then I would have had to shower after the hugging....I'm so weird!

~Krista

From: jonahlisa <jonahchimerafilms (DOT) com>Subject: [infantile_scoliosi s] First appt--nervous nellyTo: infantile_scoliosis @yahoogroups. comDate: Monday, April 13, 2009, 10:02 AM

Okay, Jemma has her first appt with a pediatric ortho tomorrow morning at 8:30am at Texas ish Rite in Dallas. She'll be 4 months old next week and, other than the rib hump, appears to be completely normal and healthy.Background: Found rib hump at 3 months. Pediatrician sent us for Xray. It was done supine with hands over head on adult equipment with tech and radiologist inexperienced with this disease. Radiologist read a 34 thoracic curve. We have first opinion at Texas ish Rite and second opinion scheduled for May 6th (unless there's a cancellation and we can get in earlier) at Shriners in SLC. So...I'm very nervous. What are the questions I should be asking so I can check it against the list I've already started? What should I expect or push for at this appointment. I know I may not walk away with a definitive dx but any advice would be

appreciated.

[Guest guest]

A couple of castings ago I had the hardest time emotionally of any of the castings. For the first time our doc seemed deflated and puzzled as to why we weren't seeing the results he hoped for and expected. I was so down and exhausted. I felt terrible and achy. (Found out later I had strep throat.) It was truly a low point for me.The tech who was supposed to do the trimming forgot to show up in the OR so we had to go to the clinic after recovery. Well, sitting in the waiting room at the doctors office a heavy set man in a big NY Giants jacket started up a conversation. (I LOVE TO TALK, but it was the last thing I wanted to do at that moment.) He was asking why we were there, questions about the cast etc. He then spoke with a different tone and

softly said, "I can see the burden in your eyes and I am sorry." Are you kidding me?! I bawled right there. He patted me on the back, told me he breeds golden doodles (dog mix) and he would go and bring me the best one. Now that made me smile. Traveling 7 hours with a newly casted 2 and half year old and a puppy! No thank you. I do think he was an angel.I was so touched by his kindness. I get tears thinking of him. (and now the smokey little teenager too)

This journey has taught me about empathy and the goodness in others.

Jill

From: jonahlisa <jonahchimerafilms (DOT) com>Subject: [infantile_scoliosi s] First appt--nervous nellyTo: infantile_scoliosis @yahoogroups. comDate: Monday, April 13, 2009, 10:02 AM

Okay, Jemma has her first appt with a pediatric ortho tomorrow morning at 8:30am at Texas ish Rite in Dallas. She'll be 4 months old next week and, other than the rib hump, appears to be completely normal and healthy.Background: Found rib hump at 3 months. Pediatrician sent us for Xray. It was done supine with hands over head on adult equipment with tech and radiologist inexperienced with this disease. Radiologist read a 34 thoracic curve. We have first opinion at Texas ish Rite and second opinion scheduled for May 6th (unless there's a cancellation and we can get in earlier) at Shriners in SLC. So...I'm very nervous. What are the questions I should be asking so I can check it against the list I've already started? What should I expect or push for at this appointment. I know I may not walk away with a definitive dx but any advice would be

appreciated.