Leg Fracture and an Unplanned trip to Baltimore

Well, we're back in Baltimore (Lydia & Tim this time) for a unplanned and untimely visit just days before Christmas. Lydia's X-ray last week showed a fracture in her tibia and a 10 degree sideways bend at the lengthening site, so we had to rush off to get it looked at. Apparently it's not uncommon in these cases, since the bone is still not fully hardened. So after a looooong flight with a 4-hour delay in Vegas, we arrived in Baltimore at 4:30am. Lydia was in high spirits, drawing pictures for strangers, saying HI to everyone, even carrying her own boarding pass and high-fiving the security guards!

We spent the next day (Monday) in the clinic getting X-rays and consulting with the surgeons. They said they would either put a rod inside the tibia to hold it in place and keep the bone from bending further, or just cast it for 4 weeks, and they'd decide that after the surgery started. Either way they would also put an 8-plate -- looks kind of like a big figure-eight shaped staple -- which over time will make the bone grow back into a straight line. It was an exhausting day for me, but Lydia was a real trooper, making friends in the playroom and having a ball. That evening in the Ronald McDonald house, what seemed like the entire Baltimore police department and every Maryland State Trooper and County Sheriff in the state along with one Santa Claus came racing up to the house with sirens and lights flashing and tromped inside with armloads of presents for the kids. There must have been a hundred of them, and enough presents for 5 times the number of kids in the house. The house director made a speech and talked at length about how this place changes the lives of so many children from all over the world. There are some pretty hard cases here right now - liver transplants, leukemia, cancer, total disablement plus more mild problems like Lydia's. It was touching, and caused more than a few tough-looking cops to blink back tears.  I struggled as well.  Poor Lydia was just too tired and I had put her to bed before they arrived.  I did sneak downstairs and got her a present later on.

So on Tuesday we went in for surgery at 6am, and they decided to skip the rod and just cast her, plus put the eight-plate in. We're glad because it meant it was a short, simple surgery with a quick recovery. She does have to wear a removable cast for 4 weeks, which is a bummer since she was just starting to get around really well after the fixator was removed in September. She's been riding scooters and tricycles and really "blooming" which was great to see after the long time in the fixator which had kept her down all spring and summer. As usual, she accepted all the surgical prep without a fuss, but woke up from the anesthesia pretty unhappy - but that's normal.

This morning they almost cancelled the surgery completely, because she had signs of a cold or stomach bug, and anesthesia can be very risky under those circumstances. So she had an examination by an impressive team of doctors, anesthesiolgists, and surgeons and they said she was OK to go ahead, but at one point in the discussions I began to panic and almost cancelled the whole thing! Needless to say this did not make me less anxious in the waiting room during the surgery. I'm glad she was well enough to go ahead, because otherwise we'd have had to stay here through Christmas, or return having accomplished nothing and had to return in January by which time the bone might have bent even further.

This trip has been the hardest yet on me. Sometimes it seems like Lydia is the tough one and I am the one losing it.

Anyway, we have a 7am flight tomorrow, Christmas Eve, so will be getting up at 3:30am so I need to get some dinner and get to bed. It will be a relief to be home for Christmas. :)

Tim

Before they put the silly hat on!

Look at the Penguin Cos the Face Ain't Listening!!

Waiting for surgery!

In Recovery- Fixator Removed!

HELL'S KITCHEN WINNER_ ROCK!!!

FIXATOR OFF!! BRIGHT PINK CAST ON!!!!

Hi again
It's the next day. We are still in the hospital but all being well we'll be going home today. Home as in the RMH- which by the way is looking pretty flippin' good!! They have renevated all the rooms and they are fantasic! And another thing to report.......when we arrived there 2 days ago....the winner of last seasons Hell's Kitchen - ROCK!...cooked our dinner!!!!!!!!!!!!!!!!!!!!! WOWWWW!!!!! If Gorden Ramsey likes his food then we surely do!!!! He made his signiture dish of crab cakes served with rice and a greek yogurt dip with salad and homemade dressing....followed by a hot peach crunch served with vanilla icecream- yuuummmmyyyy!!! If you check out the RMH Baltimore website there is likely to be an interview that I gave about the meals at the house!!! Yes I'm a star at last!!!!!.... So back to Lydia..!!.. She is doing fine. Sick on the first day because of the anaesthesia in her system- but that is to be expected. Dr Standard has put a rod in her femur. Her cast is full length and I have been instructed that she isn't to weight bear on her leg for 2 weeks.
One bit of shocking news is that I'm sharing a hospital room with Riley, one of the girls who is in the picture with Lydia waiting for Pam's pin care. She had her fixator removed 2 weeks ago but her femur fractured and so she had to have an emergency surgery yesterday to put a fixator back on....can you believe it. She lost the length gained when her bone fractured so she is having to go through the process again. I asked Dr Standard how many times this has happenned with other patients and he said it has only occurred twice before. That's out of about 100 cases.
So cross fingers and touch wood this doesn't happen to Lydia.

September 08- FIXATOR REMOVAL!!!

Well, as I type, Lydia is under a general anasthetic and having her fixator removed! I have a pager so I am ready to go and see her as soon as it starts bleeping and flashing!
It has been a while since I last wrote so here's the update. Since we returned to California, Lydia has had to have 5 therapy sessions a week, with Memi to try and increase her knee bending/knee straightening range. Unfortunately, busy family life has proved too much for me, and so the exercise regement that I took on with Lydia in Baltimore, to help reinforce the ground gained by the therapist fell by the way side when we were back home. It doesn't help that it is emotionally gruelling to hear her shout/cry out with pain and when there is so much else to do....well need I say more. I'm so sorry Lydia. There have been many moments on this journey where I have wondered whether we took the right path. Maybe the option to amputate her left foot and fit a prosthetic which makes up the leg length, would have been the kinder option. I honestly don't know, all I do know is that if I had to start this journey again and I truely knew what Lydia and I were up against with the lengthening, I would probably take her down the amputation route. Her leg is so stiff, her knee hardly bends and causes her so much pain. I don't know if she'll ever get her range back , especially with me not being tough enough with her. Tough love they call it and it is so true....
Sorry this hasn't been very positive.

SuperMom!

This was taken back in March when we were all together in the house. They
love their mom!

Crafts at the RMHouse!

Notice her left leg is slightly lodger than her right!

Out for the day in Baltimore

Dr Standard Himself!!!

Waiting for Pam, the pin care expert!

1 WEEK LEFT !!!

Why Hello!
It has been such a long time since my last entry that you all must be wondering what's going on! Well wonder no longer!...I am back! So what have you missed ....ahhhh let me see....well I had flu for a week and Tim had to come back to Baltimore to look after Lydia and take her to her therapy sessions while I recovered in bed! ...I had a great weekend last week walking to the Harbor from the RMH with Lydia in her wheelchair. The Harbor is a great place to hang out -shops, restaurants, aquarium, and best of all, there were street entertainers there who were incredibly entertaining!! ....Also I caused the whole of the Ronald McDonald House computer system to crash when I tried to downloaded "Heroes" to my laptop! That was quite an achievement!
Well enough of all this chat, today's news is much more important! We saw Doctor Standard (so good looking!!) and the news is we are no longer lengthening!!!!! YAY!!!! Her femur has grown just over 6cm and her tibia has grown just over 4cm! So, for you old school folks, that's about a total of 4 inches! We are set to go home in 1 weeks time!...Well 21st May to be exact!...I won't recognise my house when I see it, it has been soooo long.....9572 is the number I think!!
Lydia is doing well, she has survived on Pedisure having temporarily given up normal food....hopefully that will change though as we get back into the swing of things. She will have her fixator on for another 3-4 months....which is a little longer than we were originally told, but what is a week or 2/3/4 when it comes to saving your foot! Unfortunately the beach is going to be out of bounds for us while the fixator is on, as is anywhere with sand. When it is removed she'll need approximately 2cm shoe lift on her right foot!
So homeward bound we will go! I am not looking forward to the journey home- a wheelchair, 3 suitcases hand luggage.....Lydia with fixator....ahhhhhh!!!! But no point thinking about it until the 21st! I am looking forward to not being stuck in a room with children's DVD's playing all the time....Disney/Mor'a Dora/Baby Bloomin Einsteins... although I have to say that I have grown rather too fond of the cartoon character Aladdin...it's a good job he's a cartoon is all I can say!!!
Well better go but before I do I would like to thank anyone who has sent me anything... and thank you Gisela for your cards every week! A very special thank you to Hydee and Thom for looking after my precious baby Joel...well 17 year old Joel (he'll always be my baby!) , thank you Tim for holding the fort and playing "mum" as well as "dad" at home. Thank you to Grandma Phyllis and Papa Chuck for looking after my precious Eliza....I bet she's grown since I've been away....Can't wait to see you all and catch up! Don't be offended if you have to reintroduce yourselves to me!!! Haha!! And thank you to the Ronald McDonald House for making my stay so comfortable, fun and easy!
Christina

6cm!

Well, Hi there stranger! It has been way too long since I've done an update on this site. Three weeks with Eliza and Tim here makes quite a difference to the amount of spare time I have! Love you Ellie, Love you Tim!!! Can't wait to see you again!
OK, yesterday Lydia saw Dr Standard again. He measured the new bone growth. She has gained an extra 3cm in her femur and 3cm in her tibia! It amazes me! Well with a left leg 6cm longer than it was when we arrived here, I thought he would say that we could come home already! But.....Ney!!...he wants her to gain 2cm extra in both bones, making her left leg longer than her right! My job this weekend is to buy a new pair of shoes for Lydia so that the Orthotist can attach a 4cm lift to the right foot! Apparently after a few years her legs will be the same length and then in a few more years her right leg will be longer again, according to the doctors.
The only other news since I last wrote is that I had a birthday and I've left my thirties forever....never to return.....NNNOOOOOOOooooooo!!!!!!!!!!!!!!!!!!!! I am 40 and 4 days old! If it wasn't for American Idol, I really don't know how I could have managed to get through this week!

Dr. Paley and the latest X-rays

Easter at the RMH

Easter was great at RMH. They had people in to help color eggs the evening
before, and an easter egg hunt in the playroom after. And of course, lots of
chocolate and candy! The girls had a ball.

Videos from 2008

 In the pool

Walking at RMH

Walking at the Hospital

Walking with a walker

Oh Lord, Won't You Give Me a Brand New Left Leg

Chrissie's Janis Joplin-inspired song about the difficult decisions we faced as parents.

Warning...  tends to trigger tears in anyone with a heart!   💖

NEW: Audio clip

Recent technological advances have made it possible to actually HEAR the bone growing! They take a long recording over several hours and then speed it up so you can hear it. I didn't believe it myself until I heard it!!! I tell you, the things they do there are amazing. Listen for yourself!     <wink>

Walking and Swimming (sort of!)

Walking and Swimming already. Hopefully she'll be running by summertime!!!!

X-rays

Check out the cool X-rays! Although it looks like there is a big gap, it's actually filled with soft bone tissue that will solidify as soon as we stop lengthening.

This is her femur:


This is her tibia:


And this is the whole leg:

17th March 2008- First follow up appointment.

Well, it's been about 3 weeks since Lydia's surgery and today was her first follow-up appointment with Dr Standard (her surgeon). It was cool to see the x-rays of her leg and look at the gap between the bones which is the new bone forming. Anyway according to the x-ray Dr Standard wants to speed up the growth of the femur but slow down the growth of the tibia.
Since the last post we have been quite busy! On Thursday the Ronald McDonald families were given free tickets to the Ringling Bros. and Barnum and Bailey Circus! There were trapeze artists, clowns, tigers, elephants, zebras, dogs, contortionists and the lot! Lydia wanted to go home the whole time we were there, unfortunately! The only thing that quietened her down was when the tigers arrived....maybe I shouldn't have told her that they eat children who fuss!! Poor thing!! Oh, it's hard being 3!
Also she started antibiotics as one of the pin sites looked like it may be infected and it was causing her a lot of discomfort. It's been 4 days now since she first started taking the medicine and it is looking better.
The weekend went well, she did her exercises- hates the knee bends- they are torturous to her. There was a St Patrick's Day Party for the kids on Saturday and we were given some free food, drinks, diapers and treats! Yesterday, there was a puppet show after the meal.
All in all, I kind of feel like I'm on vacation! There are house keepers cleaning the communal spaces everyday, I only need to keep one small bedroom and a small bathroom clean and with only Lydia and me that's an easy task! Meals are cooked .... I think they'll have to throw me out of this place when it's time for me to go! Other than the pain and missing the rest of the family and friends, life her is pretty stressless!!!
Love you all, Chrissie xoxoxxo

Eliza at Home

Eliza is doing well back home in L.A. with Dad, she's been very good but is a handful sometimes - Many thanks to Mom and Joel for helping out! She asks about Liddy often, she knows we're going to visit her soon, and is counting down the days until we go. The kids and teachers at pre-school have been asking about her too. Tonight out of the blue Ellie told me she wanted to be a doctor when she grows up (oh, and a ballerina too). When I said, "Wow, a doctor?" she said "Yes. I'm going to be a Dr. Paley and fix legs. But only when I grow up. Not right now. Only when I grow up." She seemed to want to make it clear not to expect any immediate surgeries from her... (wayyyyyy too cute!!!) -- Tim

Here she is this morning in the backyard before school:

Physical therapy In the pool

Fri March 7th 2008, Tim goes home

Yesterday morning Tim went back home so now it's just Lydia and me... the room seems so quiet and tidy!!!! Sorry Tim! Yesterday was the hardest day for me. The pin care after the swimming was so hard on her, she was screaming out and trying to stop me from cleaning the pin sites. Usually Pam does this job but she's away for 2 weeks. In the end another parent had to hold her arms so that I could do it. We were both in tears at the end of it. I can see that I'm going to have to toughen up a little! She did really well during her PT shortly afterwards and she was very proud to tell me that she didn't cry once!

She did her pool exercises in her new Dora swimming suit today, which makes a nice change from her baggy knickers! I had to cut the side and sew ties to it so that I can put it on her. After finishing that job I soon realised that I had cut and sewn the wrong side and had to start again! What am I like!! Today's pin care was a little easier. and when I collected her, at the end of her PT session, she was walking with a walker and did about 15m on her own! I am so pleased with her progress. She is just dealing with everything so well.

We spoke to Eliza on the phone last night and Lydia told Eliza that she missed her and Eliza said "me too!" and they both said "I love you" to each other ... it was so sweet.

Well nothing else to report other than I have learned not to give medicine to her in the shared area's of the house! A very nice, well intentioned woman saw the way I was trying to give Lydia her medicine and she took it upon herself to show me how to do it forcibly! And she literally showed me- poor Lydia. It may be the right way for most people, but it just can't do it like that. Not for a 3 year old anyway. So that was horrible but we've both gotten over it! Lydia too!!

Thank you, to everyone who has posted a comment, or sent a card or something!! They really keep our spirits up. Love to all, Chrissie xxxx

Thurs March 6- Tim has gone home

Well, it's just Liddy and me! Tim flew home today to keep earning the dosh and look after Eliza and Joel!

Tuesday March 4th 2008 - Some Good News!

Well it looks like our fear about the sponges was short lived! We can use ordinary gauze instead, and when the wounds have stopped draining, we can stop the gauze too!! PPPHHHEEEWWW!!!!!!!!!!!!!
Lydia had her first swimming pool session today! After a few minutes of crying to get out she calmed down and really started to enjoy it! She was then showered and all her pin sites were cleaned with antibacterial soap. It must have felt so nice to have a proper wash at last.
Physical Therapy, on the other hand, is going to be a tough one for her. The first session yesterday was quite a gentle session but today I had to leave her so they could work her a little harder without me there to cry out to. She looked quite unhappy when I collected her, and she fell asleep about 2 minutes after I wheeled her out of the room. I've been told that this is quite normal though! It may take her a week or two to get used to it!

The Hard Part

Today was the first day that we had to start turning the keys three times per day on Lydia's fixator in order for the bones to move apart and so lengthen. She is going to grow 1.5mm per day on her left leg. We also have to clean the pin sites every day with saline solution and loads of Q-tips. I can't believe she has 18 pins going into her leg! About 13 of them have to be covered with fresh custom-made foam pads every day and each pad costs $3. Some of the pins need more than one pad too. It is a crazy expense and we've been told that the insurance companies don't cover the cost of it - over $1100/month for foam pads!
Lydia is taking Roxicet pain medicine and it is taking away her appetite, she's barely eating anything. I hope she starts eating well soon. We can't reduce her pain medication to get her to eat, since last night she woke up screaming in agony because she'd gone too long without any.
Tomorrow we'll be going to her 1st Physical Therapy session which is undoubtedly going to be painful for her. We have struggled to get her to do any exercises today but maybe when she gets into a Mon-Fri routine with her PT she'll be more able to do them back at the RM House with me.
Thank you every one for your comments and words of encouragement. It means such a lot. Love Chrissie

Settled in at RMH

Lydia in the playroom at RMH -- Feels like our second home.

Leaving the hospital

This is us just before we left the hospital. Liddy was doing so well they let us go today (Friday) instead of over the weekend!

Doing fine on the 2nd day

Two days later and we're all doing fine. Liddy had several trips to the playroom today and really perked up at times, even smiling and laughing now and then. She's already started her PT, and the nurse demonstrated the daily pin care we'll have to do - a daunting task to say the least. She seems to have accepted the fixators, but is not liking the PT *or* the pin care, because both hurt a bit, even with the epidural pain block.

 

Baltimore Address

Thank you so much for all your lovely comments, well wishes and prayers! My inbox has never been so full! It means such alot to us to have all that hopeful positive energy coming our way. I have been asked to give an address out, so here it is... Room 214, Ronald McDonald House, 635 W Lexington St, Baltimore, MD 21201, USA.

Love to all,

Chrissie xxxx

The Ilizarov frame

In her own room at last!

Lydia gets a room

Recovery

Lydia resting in recovery after a very sucessful surgery

On our way

Chrissie and Lydia are already in Baltimore, and I leave tomorrow morning. Her surgery is Tuesday the 26th. I will post an update as soon as possible!

Lydia's First Lengthening

Well, it's been nearly a year since I created this blog to track Lydia's progress through leg lengthening. Back in April of 2007 she had her ankle reconstructed, which was a great success. Before that her foot pointed downwards like a ballerina and now it is in a normal position, and she's been able to walk and run on it without wearing a special splint. She still wears a lift on her shoe due to the length discrepancy, but gets around just fine with or without it. She also had knee surgery to correct problems related to the absence of her fibula. All of it has gone well and we are now on the eve of her first lengthening and are very excited (and nervous) moving to the next phase! Here she is on her first day of preschool a few months ago.

List of Surgeries

Here is a list of all of Lydia's Surgeries & Procedures

1) Apr 2007 - Super Ankle & Knee
2) Feb 2008 - Lengthening #1 (Femur & Tibia combined, external)
3) Sep 2008 - Fixator removal
4) Dec 2008 - Tibia fracture & add "8 Plate"
5) Aug 2009 - Implant removal
6) Jun 2010 - Hip Osteotomy & Ankle surgery #2
7) Aug 2010 - Nerve decompression
8) Apr 2011 - Ankle surgery & add "8 Plate"
9) Apr 2013 - Ankle Fusing, Hip Osteotomy
10) Dec 2013 - Lengthening #2 (Tibia, external)
11) July 2014 - Fixator removal
------ some surgeries may be missing here, need details ------
12) Apr 2017 - Lengthening #3 (Tibia, internal)
13) Jun 2021 - Lengthening #4 (Femur, internal), old implant removed
14) Jul 2021 - Toe fixation & tendon adjustment
15) Aug 2021 - Nerve Decompression
16) Future (Dec 2021)- Replace internal rod
17) Future (2022) - Remove internal femur rod
Sep 2023 - Tibia & Femur Osteotomy, move ligament, for knee stability
Jan 2024 - Knee Arthroscopy, to determine source of walking pain, outpatient
Jan 2024 - Additional fixation two screws in knee, outpatient

Pregnancy Today Magazine Article (Approx 2008)