I just wanted to apologise for the format. I really did have paragraphs, but everything changes when I post...hope you will still be able to read it!

Above are a few more photos from our week. I love the one with the Eleanor the Incredible cookie; thanks John and Diane! The other is really self explanatory and sums up our 5 hour therapy experience. We love our grandmas and grandpas!

We have officially been lengthening for only 3 weeks and the progress is amazing! You can see from the pictures above the difference in Eleanor's lift. The lift was basically halved and she is very proud!

On Monday we met with Dr. Paley (on left). It was a great visit because we learned that Eleanor has already gained one inch of length and has one more to go. If everything continues to go well, we may be home in one month versus two! That was definitely exciting news!!

Eleanor continues to do very well with therapy and bending her knee. She has even taken up ballet with her fixator. She and Elizabeth, the little girl pictured with her last post who also has a fixator, have been entertaining the household with their new moves. A wind wood quartet performed at the house this week with the addition of 2 tiny dancers...make that 3, Margaret joined toward the end.

Dr. Standard, pictured on right, will continue to follow Eleanor while we are here as Dr. Paley is moving to Florida. Dr. Paley will continue to see Eleanor this summer when he is settled in his new practice. Both are amazing, world renowned orthopedic surgeons instrumental in advancing the field of deformity correction. Limb lengthening has really only been around for about 20 years and is ever changing. We are hopeful that this will be Eleanor's only lengthening, but if she has another down the road, it will most likely be a completely different process. Internal devices are now being used in adults. It really is amazing to see what these two talented doctors are able to do. Many of the children they work with have been told amputation is their only option and have fully functional limbs thanks to legthening. Many of you know that we were considering amputation for Eleanor too. We feel grateful to have found Dr. Paley and Dr. Standard. I really don't think I would have trusted anyone else.

We had a great visit with grandpa Dave. Eleanor and grandpa went to an Oriole's game. We also had a chance to visit Shenandoah National Park. The mountains were beautiful and it was great break from city life. Eleanor was able to participate in junior ranger day at the park. The picture above was Eleanor on a nature hike. She was looking at termites with her magnifying glass. She was really interested in the hike and also got a chance to use a fire hose with the fire crew. The fixator really does not slow her down a bit!

Community at the Ronald McDonald House

We have had a busy week. Eleanor continues to have therapy every day. The good news from therapy this week is that we can have Eleanor's shoe lift trimmed by one inch! There is a visible change as Eleanor's left hip is definitely higher as her leg is growing! It is exciting to see the progress.

We said goodbye to Grandma Maureen this week. She had been staying with us from the beginning and was a great help. We had many fun adventure and miss her company. We really enjoyed our visit. Grandpa Dave joined us on Saturday and will be here for the week.

The above pictures are mostly from the weekend. The top is Eleanor and Margaret at the zoo with their favorite animal the chimpanzee. Eleanor especially did not want to leave. There are 2 young chimps that are very active. They were chasing each other and swinging from ropes, banging the windows. They were fun to watch. I think we might have to make the trip often as both girls loved to watch the animals and it is a good outdoor destination.

The next picture is Eleanor and her friend Elizabeth. Elizabeth is 4, has a fixator and stays at the RMH with us. She and Eleanor have similar personalities and are becoming fast friends. As you can see. Elizabeth also has short arms which will also be lengthened one day.

The next pictures are at the RMH. Eleanor and Margaret seem to thrive here. Eleanor has never gotten close to Santa Claus, but warmed right up to the Easter bunny when he came to visit last weekend. Margaret is sitting with her first love Ese. She will happily go sit with him even from Mom's arms. She once sat quietly with him for close to an hour while he played bingo. It is a fun relationship to watch. We will miss Ese when he and his family return to Hawaii this week.

Success-here are the rest of the pictures from the hospital stay and beyond. The only problem now is that they ended up in reverse order. Oh well, maybe I will figure it out by the time we come home.

Many of the pictures are of Eleanor in the hospital. The ones with the pink gown are right after surgery. You can see the fixator up close. It really is large and heavy, but Eleanor was pleased that it was "small." There are many different types and Eleanor has seen them all. I think she thought her entire leg would be "caged."

The others are Eleanor walking with a walker, which she doesn't use anymore, and getting ready to do pool therapy.

I can't remember what I said yesterday about our visit with Dr. Paley. We waited 6 hours for basiclly no news, but reassurance that all is going well. Also we have moved to Tylenol only for pain. Eleanor does not want any pain medication because she is not having any pain (but mostly because it tastes bad.)

We are off to the pool. I just wanted to get these out. Thanks for the continued love and support.

Finally, I am getting these images to work. I have spent hours and am starting to suspect the poor Internet reception/signal at the Ronald McDonald House instead of my lack of computer skills beyond Epic (what we use at work.) I am feeling somewhat validated now that I know others are having difficulty.

We are all doing well. Eleanor has finished her first week of PT and continues to be a super star. Everyone comments on how great she does. The physical therapist she was working with today said, "I really mean it, you know that right?"

Here is Eleanor the rock star from the beginning. The picture on the left is in the x-ray room the day before surgery. She is standing on blocks that build up the difference of 5cm. I will try to post the x-rays when I have access to a scanner. It is pretty interesting to see the difference.

The other photo is in the recovery room. Eleanor is showing off her new bear and looking pretty perky for just coming out of anesthesia. I would post more if I could, but nothing else seems to be working. I will try from the hospital with better luck tommorrow.

The honeymoon is officially over. Eleanor has her first pin infection, which is a very common complication. It is so common that they send you home from the hospital with a prescription for antibiotics with refills. I noticed that the pin sites on her shin were getting slightly red during pin care yesterday and Eleanor complained of pain in that same spot, though the pain understandably could have been caused by Margaret jumping on her leg. She had a low grade temp and was not herself this afternoon, but seemed better after a long nap.

Eleanor had her physical therapy evaluation this morning. She did well, though already she is fighting bending her knee which is what she did with her last surgery. The physical therapist was able to bend her to 65 degrees with tears (the first through this process) and is hoping to have her to 70 by the end of the week. He said that as legthening progresses there will be less flexion due to muscles stretching and that 45 degrees is the red zone where we would slow or stop legthening. We have been really encouraging Eleanor to bend that knee!

Margaret has become quiet the menace. She and another little girl her age hang and climb anything they can reach. I am pretty sure we are beginning to see the terrible twos. She has taken to escaping our room any chance she gets after she discovered that she can reach the door handle. She gets the door open and takes off with abandon. Tonight she managed to sneak her little naked self out after her bath and was already to the kitchen by the time I caught up with her. She thought this was hilarious and gave me her best troaty, fake laugh. She also has taken to only eating cheese and sweets...a true Wisconsin girl!

Tomorrow will be Eleanor's first land and pool therapy. We were able to see the pool today and Eleanor is pretty excited. It is an above ground, glass pool so that the therapists can see what the kids are doing. Eleanor loves that there is a mechanical chair lift to get in. She aslo enjoys the lift on the shuttle bus to and from therapy. We will update about therapy tomorrow. Good night to all!

Home at the RMH

Eleanor was discharged yesterday morning after having another morning with physical therapy and walking. She was glad to be back at the Ronald McDonald House and spent the afternoon playing on the playground equipment. She discovered that she is able to wheel herself up the ramp and then turns herself around and lets herself roll down. She ends up going quite fast in the end and of course loves it; Grandma and Mom try not to watch. Eleanor also enjoyed swinging this afternoon. The Ronald McDonald House is a great place with many amazing families and volunteers. Dinner is provided every night by different volunteer groups and there is usually an activity or art/craft project afterward. Eleanor does not want to miss a thing. Tonight she fell asleep at dinner (she had a hard time sleeping last night), but managed to wake up enough to complete her art project before going to bed. She would not miss it!

We managed to explore a little today. We walked up the street to the Lexington Market which houses the famous Faidley's seafood. Those familiar with the show The Wire may recognize the name. It was definitely an interesting experience. There was every type of food imaginable in one building and it was packed! I have done a lot of traveling and have never seen anything quite like it. I am sure we will visit often as I have found something worth giving up my latte habit. It was a juice booth that had about 40 different combinations. It reminded me of Equador where the juice was simply fresh fruit blended as you ordered. (The only difference was the plastic cup vs the community glass where it is simply refilled for the next person.) Eleanor chose watermelon, papaya and pineapple while Maureen had watermelon, kiwi and banana. Both were amazing and Margaret claimed both as her own. We didn't try the seafood today, but will have to experience before leaving.

Dan and Henry have arrived home and are adjusting to a much quieter household. Dan will be sending out a package with the camera cable so we will finally be able to post pictures!

Post op day two

Eleanor started her day late today, sleeping until 11:00! She then had brunch and we learned how to do pin care, which will now be part of our daily routine. We also learned that we can begin lengthening on Monday.

I will describe the what lengthening entails for those who are unfamiliar with the process. During Eleanor's surgery Tuesday they placed a fixator by breaking her femur, then placing pins above and below the break. There is a bar going down her leg with a screw that connects the pins, then she has a half circle below her knee to stabilize the knee. We will use a wrench to turn the screw which will slowly pull the bone apart. We were instructed to do quarter turns of the screw 4 times daily so that we see one new thread per day. One thread is about 1mm. Obviously this is a slow process as the muscles, ligaments and nerves must also stretch. We will stay in Baltimore for the entire lengthening or distraction phase for careful monitoring and physical therapy. (PT involves one hour in the pool and one hour on land daily.) Our goal is to lengthen about 5cm which should take about 3 months. After lengthening, Eleanor will be able to come home with the fixator on so that her new bone can harden which will take about another 3 months. Then her fixator will come off and she will be casted and non weight-bearing for 1 month. Physical therapy will continue throughout this process and beyond until she has full mobility and strength. She should be ready for gymnastics again by early next year!

The rest of the day went well. The epidural was pulled and Eleanor continued to be comfortable with oral pain medication. She even was able to walk with a walker today!!! I wish I was able to post pictures because Eleanor looks so happy in all of them, not at all like a girl who just had surgery. We anticipate being discharged from the hospital tomorrow. Dan and Henry fly home tomorrow and we will miss them terribly, but more space in our room is appealing. It is not easy or comfortable fitting 6 people in a room with a twin and a double, especially when we are adding a wheelchair and several new stuffed animals and dolls to the menagerie. Eleanor is sitting next to me singing and coloring-she wishes everyone goodnight.

Post-op day one

Eleanor continues to amaze all. She was wide-eyed and happy as soon as she opened her eyes in the recovery room. We were able to be with her the entire time. She has not had any pain, has been eating great and even slept through the night-right through a blood draw! She smiles and talks to everyone who comes to check on her (does this sound like Eleanor?) She is fast becoming a hospital legend and has been labeled the perfect pediatric patient. Many requests have been made to either clone her or take her home. Eleanor has already been requesting to walk, but we started with getting up to the wheelchair and playroom. Henry, Margaret and grandma are coming to visit soon and then Eleanor will have a sleepover tonight with grandma Maureen. I really think Eleanor thinks that this is a continuation of vacation; we could not ask for more. We love the anesthesiologist and the great epidural. I am sure that things will change when the epidural comes out, but we are enjoying today. Thank you to everyone for all the thoughts and prayers, apparently you all have a lot of pull...keep it up!

We have arrived in Baltimore after a very relaxing vacation at the beach. The temperature was in the 40's most of the week so we had the beach to ourselves! The kids loved running from the waves and digging in the sand. We will post some pictures when we can.

Eleanor's surgery is this morning. She was very excited about everything and has been charming everyone she meets. Of course it helps that everyone she meets seems to give her some kind of gift or treat. We are going to have to rent a U-Haul for the way back! She doesn't even bat an eye about surgery. She went back telling the anesthesiologist jokes and talking about her new stuffed polar bear Fluffy from her aunt Molly.

I am currently listening to her surgeon talking to another family about their child's surgery, while Eleanor is still in surgery. It is a strange feeling, but I am sure she is in good hands...good news, it is not as bad as it sounds. He found us afterwards and Eleanor is done! Everything went as expected. We should be able to see her very soon.

The dreaded cold

The inevitable and completely predictable has happened. Henry has come down with a cold. We are madly trying to sanitize our entire home and quarantine Henry as much as possible. I think he is actually enjoying help with keeping his sisters out of his room. It is usually our rule that all are welcome. Eleanor is away for her last day of school avoiding home germs and probably picking up others to share, so I am sure our efforts are futile. I am about to go out and gather zycam, vitamin C and masks? Any other suggestions?

Back to Baltimore

We are in the process of packing up the family and heading to Baltimore for Eleanor's first and hopefully only leg lengthening. It has been a long story to say the least. I have been meaning to update everyone for quite a while, but things have been evolving so here goes...

Eleanor will be having surgery March 31st to place an external fixator on her left femur. We are hoping to lengthen her femur 5cm over the next 6 months. Eleanor, Margaret and I will stay in Baltimore for the lengthening phase, about 3 months. Eleanor will be monitored closely and will have 2 hours of therapy daily. Then we will come home for 3 months with the fixator on so that her new bone can harden.

Our Baltimore address will be:
The Ronald McDonald House
635 W. Lexington Street
Baltimore, MD 21201
cell phone 309 558 5470

Dan and Henry will be holding down the home front. Henry will finish the school year and graduate from kindergarten in May! They will be able to be with us for the first week and will come visit in May.

As most of you know, Eleanor has fibular hemimelia and proximal femoral deficiency disorder, which means her left leg is significantly shorter than her right. The difference is ~5cm with projected difference of ~12cm. Our options were to lengthen her leg or amputate. As you can imagine it has been a difficult decision. We are lucky to have found an amazing surgeon, Dr. Paley who has been instrumental in advancing the science of limb lengthening.

Eleanor had surgery last April to reconstruct her knee and hip in preparation for lengthening. She has amazed us with her strength and determination. She can and has always been able to do everything any other child can do. She was born a gymnast and is proving it in class. Her current coach encouraged her to continue and suggested she skip 2 classes ahead. Eleanor takes great pride in this and is "practicing" at home. She has even been doing bar work in Daddy's closet...lets hope she doesn't try to do the same tricks with her fixator on. I am secretly hoping it will slow her down a little bit. I can't imagine doing flips at the top of your father's closet is recommended with a fixator. (To be honest it is not recommended without, but there is no stopping Eleanor!)

We will be driving out to Maryland and plan to stop and enjoy the ocean and hopefully warmer weather on the way out. Road tripping with a 6, 4 and 1 year old...let the adventure begin!