The story

Eden was born with a congenital birth defect - her left thigh bone does not grow properly. This summer, she is undergoing a limb lengthening procedure at Sinai Hospital in Baltimore, MD through the Rubin Institute. It is an approx 6 month process. Chris and I are grateful for everyone's well wishes, and want to do our best to keep you all informed, so we decided to create this blog. It will also be a way for us to document this process and one day we will show it to Eden and she will know, she can conquer anything.

Sunday, January 25, 2015

We're back.

January 25, 2015, today is Eden's 8th birthday. It has been exactly 4 years, and we are preparing for the next surgery. It will be in one week. We will blog again, and would love for you to join our journey again.

Good news is this time it will be an internal fixator, not erector set on her leg. We are aiming for 5 cm. I will take pics of the internal fixator and film the lengthening as it is magnetized and done completely different than our first go round. We really do not know what to expect except for three things -

  1. Eden will be great
  2. our family will get through this with laughter and love
  3. our wonderful friends and family are here to help us
Stay tuned....

Tuesday, January 25, 2011

a letter to Eden

Dear Eden,

Today is your birthday, you are 4. It is also 6 months since your limb lengthening began. You have worn a fixator and a cast and are now nursing your wounds and learning how to walk. You are improving every day and we are sure eventually you will walk and run just like the rest of us. No, even better than most of us, Ayla is already training you to be a soccer star. I thought I would take a moment to pause, and think about what you have been through, and what I want to be sure to tell you when you are old enough to understand all this.

As progress slowed down and milestones were far between, I did not blog often. We are at a point where this process really is almost over. It seems fitting to do this final blog post (for now) on your birthday.

We can only describe you and your journey with one word - AMAZING. You dealt with this like such a mature young girl, even a young lady. Your strength and optimism and more important your cheery personality got us all through this. Your love for your family is evident, and the way you gained courage and encouragement from us all was contagious.

There was never time to feel sorry for you, because nothing stopped you. I hope this is the person you will grow up to be. Determined, strong, confident, loyal. I can ask no more from you then to continue to be the person we saw. You will accomplish anything you choose. That was the true purpose of this blog. One day, we will sit with you and read this. You will learn about your journey, you will see all the wonderful, caring people who followed us and supported us. I will show you some facebook postings had more than 70 comments. You will read what a loved little girl you are. And you will know, with certainty, there is nothing you cant over come. There will be few challenges in your life that you will fear or shy away from. You proved this year you can handle anything.

We are all so proud of you, and are thankful each day that you are our daughter. You have taught us the true lessons in life as well. Happiness, health, family. You taught us we can support each other. Not only was your strength tested, but so was our families. The result is we are closer than ever. Thank you Eden, you are a gift. Happy birthday.

Saturday, December 18, 2010

Eden post fixator

Eden has a cast on her leg and is feeling ok. Surgery went fine. They inserted a metal rod for more strength so she is still kind of bionic. They will take it out when we do the next lengthening - we do not yet know when that will be. We are kind of back to square one, she does not want to stand on her leg or even see it and is afraid to move. But she felt that way about the fixator and look what she was able to do at the end. The wounds will heal themselves. I am worried about itching, but what can we do about that? A few of the wounds from her hip area are not covered so we can watch those heal. Ayla will take care of them for us!

The hospital stay was fine. We checked in at 9 am, we were on the schedule for 11:30, but we did not know that. Eden started to get hungry but managed to not fuss too much. There was a younger child they operated on ahead of us. Eden isn't the baby anymore getting first dibs in the OR. I went into the OR like the past two times. I can say for sure, this was the easiest time, for me. For her it was a bit harder. Being older, she was more aware and more scared. That was not fun but we are so lucky they allow us to be with her until she is asleep.

Recovery was full so it took a bit to get her there - she did wake a few seconds before we got there so she was a bit upset when they brought us to her. The day was not great, but not terrible. I think it is more fear than pain. We managed her pain with the same meds we have given her all along, so we are keeping her doped to prevent any pain. She is also taking antibiotics for a week to ward off any infection from the rod and the open wounds. The Dr has a near perfect (just on case that happened recently) record on his kids not getting infections. That was good to hear.

They kept us in recovery for a while, Eden dozed in and out and peed on my leg (a mother's love) and Chris and I played back gammon on the ipad. Fun toy. Good news - we got a private room, but wow was it small. Eden wanted round the clock cuddles, so we gave it to her. There was a pull out chair/bed so we managed to get sleep, one on the pull out and one in her bed. The nurses were good and let her sleep for a 5 hour stretch at least. We bought them dinner, so maybe that helped.

By 10 am we were itching to get out and they gave Eden a last dose of meds, and signed our papers. We were home by 1pm! Sabba and Savta were waiting for us with TWO balloons - Dora and a Strawberry shortcake. As usual, a big hit.

So, back to the grind, kids with friends, sleepovers, Chris took them ice skating yada yada

We will see how quickly we can get Eden moving. The cast comes off in one month - so she should be free by her birthday late January! By the summer, she should have full use of her leg back. This will be almost a one year process. Good thing they did not tell us what we were in for and exactly how long! We are tired!!! But worth every second of what we have been through, and will go through, to give our little girl two perfect legs.

As always, thanks for all the support. We read all the facebook postings and emails, they keep us laughing, smiling, and hoping.

Wednesday, December 15, 2010

The final countdown

In two days the fixator comes off. 3 months turning, 2 months strengthening the bone. The Dr was supposed to be on a relief mission in Haiti so we were scheduled for Jan 5. The trip was canceled and we found out through the grapevine so we managed to get the surgery pushed up. This is the best holiday gift possible.

Eden will get a cast for one month, then we are DONE. I am sure there is lots more PT ahead of her, but Eden loves Leslie so that is not an issue. In fact, I am pretty sure Eden will be upset when we tell her PT is done.

No words can thank you all for your continued support and prayers, we are almost at the finish line, so keep them coming.

Friday, November 5, 2010

Almost done

Well, I went back to work. So working full time, taking care of the family and Eden's PT does not leave much time for updates. There has not been much going on, so I have been remiss on updates. Work is going great. Eden is doing great. Life is hectic, but what is new. The fixator care adds a bit of strain, but we are all good.

Yesterday we had an x-ray done of Eden's new bone. We are mailing it to Dr Standard and he will determine when the fixator can come off. best case is in a month. So I am doing this update to ask you all to please cross fingers, say prayers, send good thoughts, do or say what ever it is you believe in - BECAUSE WE ARE READY FOR THE FIXATOR TO BE OFF.

Thanks to you all for the encouragement, we know you are with us!

Wednesday, September 29, 2010

5.6 cm - and still going

Sorry it has been a while. I know a lot of you know things got funky last week and I was remiss in not updating Eden's progress. But the story begins that it appeared Eden's range of motion in her knee and hip was not doing well. She could not straighten her knee and her hip was getting tight. We were at numbers that the Dr said may be a sign that we have to stop turning. So on Monday we called the Dr to try and get an appt, repeatedly, we emailed, we left messages with his Asst. Then Leslie called on Tuesday and we got a call back. They told us to stop turning and come in on Th. so....Did stop turning mean we would be done, or could we start again after a few days? Did we want to be done turning even though we did not reach the target of 7 cm? Do we get excited? What do we hope for? Does it matter what we hope for, it will be what it will be. So we stopped turning and waited for Thursday.

Eden's mood seemed to improve and she even slept through the night for two days straight. Wow - did that feel good. In Balitmore we went to PT to get an evaluation. Eden looked good! Even to my eye I could see her knee was bending better and she was more relaxed and got some more movement in her hip. The therapist was cool and asked how we were feeling and was offering to sway her evaluation if we were ready to be done turning. I told her we were ambivalent, but we made it this far and lets go for it if she thinks it is safe. So she went and told the Dr we are ok to continue. So, that is what we are doing, we are still turning.We are aiming for 7 cm. Her motion is tight, but not in the danger zone. Seeing how comfortable Eden was without turning was encouraging. Even though the fixator remains on for a while after turning, it appears it will not cause her pain. It will require care, cleaning and maintenance, but at least no pain - it seems most of the pain is from the growth.

Other news - we got Eden's lift, for the right or "normal" leg. So odd she needs a lift for that leg. It is amazing, you can not even tell it is there. It is exciting that as she gets older the lift will be barely visible. Now, we need to teach her how to walk normal. She does not know heal-toe. So we are all working on it with her. She will eventually get it, just like she has overcome every thing else. Her walking is great, she barely even needs the walker at this point.

We go back to Md a week from tomorrow, Oct 7. We should be done turning soon. Wish us luck!!

Tuesday, September 14, 2010

2 months post op

We had a visit in Md yesterday, it was exactly 2 months post op as surgery was July 13. It was a hectic day as Ayla had a few issues at school while we were trying to get on the road. We handled what we could and then Sabba and Savta came to the rescue and picked up the peives. It was a 12:30 appt, we got there closer to 1 and saw the Dr at 3 pm. Right when Ayla, Jacob and my parents started to call to check in at the end of the school day so it was a bit hectic. Chris focused on Dr Standard and I focused on getting the twins settled via this is where we are via Chris...

Eden is now at 5.2 centimeters - the goal is 7. The left leg is now sightly longer then her right leg. This is causing a slight complication since she is bending the left knee to walk. The knee is not straigh but instead bent at a 13 degree angle. If it gets to a 15 degree, we need to stop the lengthening. Leslie (our PT) explained it is easier to get a knee to bend than to straighten, so we need to be on top of this. Dr Standard wants us to use the knee bar more often - we were doing it only at night and to help walk, this may help straighten the knee a bit. We also ordered a shoe lift for the right foot, irony. By putting a lift on the right foot it should also force her to straighten the left leg.

There is also some loosening at one of the pin sites internally. In the xray, you can see the open space around the pin in the bone. There is nothing we can do about this, but if it gets too loose he will need to operate again to replace the pin. Oh yeah. There is nothing we can do about this, so we hope it stays strong and we can avoid an additional operation.

He had us slow down to 3 turns a day instead of 4. Even though we are close to our goal, in theory only about 2 weeks away, it helps the bone harden if we slow down, so by going slower, the bone can harden quicker, thus decreasing the time the fixator will have to stay on post turning. Hope this makes sense to you....

Overall Eden is great. She is walking great with the walker and even a bit with out it. She can roll over and get around pretty well. She started day care in the mornings and is happy with her new class. The day is day care from 9 - 12 then PT. She is TIRED after that and sleeps well in the afternoons!

We go back to Md in 2 weeks and hope to be done at least with the phase of turning soon after. We will continue the updates.

That is all for now...