LONG NIGHT

Sorry not to have posted earlier but it has been a long night.

Surgery was a success, in that Shira's spinal cord was badly tethered and when the Neurosurgeon released it, it spang right up.  The reason we had to come cross country for this surgery is because on the MRI's and the other testing that was done, there was no proof of a tethered cord.  For people with Ehlers Danlos, the cord can be tethered but not show up on an MRI, so most Drs aren't able to diagnose  it and/or willing to treat.  Finding a neurosurgeon who knows Ehlers Danlos and is willing to operate based on clinical findings rather then is radiologic findings is a very rare species.  Dr Tye, while willing to do the surgery told us he wasn't sure he would find a tethered cord, but has worked with enough Ehelrs patients that he has seen it.  Therefore, when he told us post surgery how tightly she was tethered and how the cord sprang up when he released it, we were all thrilled. He also is now more of a "believer" in this bizarre phenomenon in Ehlers patients.

Now we just need to wait and see what results she gets from the untethering. We remain cautiously optimistic.  The Dr said that he felt the strength in her feet was better post surgery then pre-surgery :) Also, she is feeling some sensation in her lower legs, which have been numb for almost 3 years:)

Last night was rough, her pain wasn't controlled by the morphine, so they switched her to Dilaudid and gave her a pump.  At one point I was sitting by her bed, holding her hand with one hand and her pump in my other, pressing it every 15 minutes so she could try to sleep.  Of course, Shira being Shira, even as doped up as she was, kept telling me that I needed to sleep.  Little sleep was had, but we have gotten through the first 24 hours post surgery.

Shira has spiked a fever, so hopefully it won't be anything.  Right now the plan is that she will be in the hospital for 5-7 days.  Shira is happy that the hospital has BRAVO and TLC and very nice nurses.

Again, thank you for all your support, love, well wishes and prayers.

Hugs

FIX YOU

Sitting here in pre-op room, surgery is suppose to be in an hour, at 10:00 Virginia time.  Surgery should take 2-3 hours, depending how difficult Shira makes it. (that is what Dr. Tye's nurse said" Shira will go to the ICU for at least 2 nights post surgery.  While I am so glad today is finally here, I am also feeling a bit nauseous.  Guess it goes with the territory.

A number of you have asked about sending Shira something, while in ICU she can't get flowers or plants.  The hospital she is at is VCU and the only address I can find is 1250 E. Marshall St.  Richmond VA.

I will keep you posted once she is in a room.  Thank you all for your prayers and all the positive energy you are sending our way.

hugs

Hello It's Me

Good Morning,

I have taken a small vacation from posting and have been enjoying reading Shira's posts about our adventures in Virgina. Her blog address is www.thesicchick.blogspot.com.

For those of you who aren't following Shira's blog, I will catch you up.   On Friday we met her wonderful Hematologist, Dr Kahn, who came in on his day off to see Shira.  It turns out that he has baby goats and we managed to get ourselves invited over to meet the 3 baby goats.  We went over Sunday afternoon and fed and played with his goats.  He was so very kind, and had made food for us and we just hung out in his gorgeous back yard for a bit.

To back up a bit, on Saturday evening, our newly adopted east coast family, the Portners, drove from Arlington to Richmond to spend the night at our hotel and hang out with us.  In less then 24 hours, we ate and drank, played games, Shira got help with Latin homework, the kids swam, we all ate a beautiful brunch, shopped and went to the science museum.  It almost felt like we were here on vacation!

Sunday evening, we met up with Pam, the mom who had recommended Dr Tye and her 12 year old son, Roman.  It felt more like we had known them forever then this was our first time to meet.  We had a wonderful evening with Pam and Roman, and if I can figure out how to upload photo's I will share some.  We ended up seeing them again yesterday and this time we met, Eden,  Pam's 6 year old daughter who had the same surgery Shira will have by Dr Tye when she was 3.  The kids swam and then we went to dinner.  It was such a wonderful evening.

Today, Shira has another MRI  and then a quick dentist appointment, a tooth all of a sudden pushed forward.   Laundry and packing up are also on our agenda as we move hotels tomorrow to a beautiful old hotel downtown close to the hospital, the Jefferson which should be very nice.

Last night Shira and I were talking about how we were supposed to  be on the other side of surgery and flying home.  That she thought she would be back in school this week, rather then getting further behind. While this isn't where we thought we would be, we are making the best of it and trying not to focus on what was to be but rather what is and the wonderful new friends/family we have in our life due to the curve ball we were thrown.  I have to say, that one of the selfish upsides for me, is that I truly love hanging out with Shira.  While I wish she were in school and able to live the life that a 13 year old is meant to live, the other side is that we have gotten so much "together time".  While I hate the reason that makes it necessary to spend so much "together time", I do cherish our time together as  I am truly blessed with such an amazing young woman for a daughter.  

Here are some pictures.

Hugs



I want a baby goat!

 Shira sharing her salty chips with our new four legged friends

 Shira and Roman doing Hypermobile party tricks.

Above, is Shira with her hematologist Dr Kahn with the Gandolph and Gretchen Goats. (dad and mom)
 Shira, Roman and Eden in pool demonstrating "ballet fingers"

 Shira, Noah and Ben  Portner at Brunch

THE LONG AND WINDING ROAD

I am so very happy to report that we are at the end of our journey and that the long and winding road led us to where Shira is suppose to have her surgery. We met with Dr Gary Tie at VCU today and we all felt extremely comfortable with him.  He has scheduled Shira's TC for Thursday Oct 4.  He has connected her with a hematologist and pediatrician.  She will be in the ICU the first night post surgery and will have to lay flat for 3 days.  He then will want to do a 2 week post op appointment, so Shira and I will be here for a few more weeks.  Mike will fly home tomorrow and come back on Oct 3.

Shira has an MRI tomorrow afternoon and if she doesn't have any Dr appointments on Friday,  I am thinking of driving  to Colonial Williamsburg and stay overnight.   The Portner Family, who Shira has adopted as her East Coast Family, may drive to  Richmond Sat evening to hang out with us.  Shira and the Portner boys will go to the science museum on Sunday.

If anyone has suggestions on fun things to do in Virginia, let us know.

Hugs
Barbara

ON THE ROAD AGAIN

So we packed up, yet again and drove to our new hotel in Richmond VA.  It is a very nice hotel, with better mirrors and lighting then the other hotels we have been in.  I only mention this as I am now realizing the need to buy a tweezer for some unsightly facial hairs.  (TM411?)

So here's the latest update:

 I spoke with the head nurse at the orthopedic surgeons's office that Dr Sandhu referred Shira to in San Diego for scoliosis surgery.  The nurse said that the Dr does have EDS experience but she stated  that they always refer scoliosis patients who have a Tethered Cord (such as Shira) to a neurosurgeon to have TC release before considering scoliosis surgery as releasing the TC  can helps the scoliosis. (Exactly what I thought, but what do I know, I am only a mom)

I am cautiously hopeful about our appointment with Dr Tye tomorrow.

Our wonderful friend Monica sent me this quote by Randy Pausch this morning and while I was reading it, the lyrics on the radio were "Don't ever look back"

The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.”

Thank you all for your love, encouragement and help as we have faced our share of brick walls!

hugs

HOT POTATO HOT POTATO

So after a wonderful week-end of visiting with family and wonderful new family (the Portner family) we go to our much anticipated Dr appointment this morning.  Well Dr Sandhu, believes that Shira's real medical challenge causing her new issues is her scoliosis and that the tethered cord is 2ndary to the scoliosis.  Dr Sandhu feels that Shira needs scoliosis surgery as her scoliosis is pulling on the spinal cord and that doing scoliosis surgery may relieve the tethered cord.  He believes this is the surgery that should  be done first and is referring us to Dr Akbarnia in San Diego.  He feels doing the TC surgery may not be necessary after the scoliosis surgery.  He believes that Dr Akbarnia will do the surgery even though 2 top orthopedic surgeons in Southern CA already told us Shira's curve isn't bad enough to warrant surgery and they didn't believe it was her scoliosis causing the issue.

I spoke with Dr Henderson about this and of course he disagrees and believes that the scoliosis can improve once the tethered cord is released.  He is frustrated as he truly believes this is not only the right surgery but also the least invasive procedure that can give Shira the best possible outcome.

I am feeling like Shira has become a  hot potato, being passed from Dr to Dr. and it is extremely frustrating as I refuse to allow Shira to be in a wheelchair any longer then she has to be.  Shira is ready to throw in the towel and wants to go home.

Through a facebook group for EDS and related surgery's, I have gotten the name of a Pediatric Neurosurgeon in Richmond, VA, Dr Gary Tye  I called his office and pleaded our case and not only were they willing to work Shira in to see Dr Tye this Wednesday, the nurse I spoke with knew all about EDS and the complicated diagnostic issues.  For me,  Dr  Tye will be our Tie breaker (no pun intended) So for now, all we can do is wait and oh course, change hotels yet again.

Shira isn't happy with me so I think I will put myself in a time out downstairs in the hotel bar!

hugs

Monday Monday

So this morning we went to Georgetown University Hospital and dropped off Shira's MRI's and the pre/post surgery info we have.  We met briefly with Jay, Dr Sandhu's assistant, who we also gave a bag of Lindt chocolate so she would like us and to keep me from eating them. She said we would hear back by the end of the day.  About 15 minutes ago, Jay called to say that Dr Sandhu wanted to see Shira Monday morning.  He would fit her in even though he is totally booked.  So we will be there at 8:45 Monday morning and hopefully get some answers.  (As I type this the song that is playing on the computer is "Keep Holding On" hmm, I think there is a message in that for me.)

We are making the best of our Waiting in Maryland, and have made some wonderful new friends  Our new friends are also patients of Dr Henderson and are here from, Boston,  NY and San Diego for appointments with Dr Henderson.  We had a wonderful evening last night hanging our together and it was especially great for Shira to connect with more kids and adults who have some of the same medical challenges as Shira.

Tomorrow we will move hotels, our 3rd in one week.  We are going to stay in Georgetown, which seems like a cool area to walk around and is closer to the hospital where Shira will hopefully have surgery.

Tomorrow evening we will get together with Mike's cousin David and his daughter Sarah, who is a year older then Shira and who we adore.   On Sunday we will get together with Paul Portner, the son of one of Dad's best friends/collegues from Memphis.  I remember Paul as a kid and have been a part of his marriage and the birth of his 2 sons through Dr Portner and his wife Mary's pictures every time we would see them.  We are all looking forward to being with them.

Even though we have not even been here a week, we have so many people on Team Shira.  Sue Penn, a dear friend and Director if Education has put us in touch with amazing Drs at Johns Hopkins so we have  yet another Plan B if we need.  She also connected us with friends from a sister synagogue here, and I get regular phone calls to see if we need anything.  It is wonderful to have so much support when we are so far from home.

hugs and have a wonderful week-end