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!