Eight weeks later...tough as nails still!

We went to Philly on Monday and Lauryn had her monster cast removed, molded for new braces, X-ray and left in short casts on both legs to hold her position on her feet until her custom made braces are ready.

Her knees are very sore and stiff from being locked straight for the past 12 weeks. She has some sores on her feet, but her hips look amazing. No complaints from that and she seems unphased by them. Amazing since both her femurs are still healing and have pins in them.

We went to PT last week with her cast still on and my girl stood anyway!

Wednesday we went back with just the short casts on, and even though her knees are stiff and sore, she announced that she wanted to walk. I told her that we will work on that. She went back with her therapist and not three minutes later she told her PT that she wanted to stand and go to the toy closet. Next thing I knew she was up and smiling. She then stretched her knees for a little while and the next thing I knew she was standing BY HERSELF! With just an arm supporting her. this is amazing because she has been in some form of casts since early January! Can you imagine not using your legs for three months and then standing on them without blood, sweat or tears?! God, she humbles me...

Today the little firecracker is walking with her walker!! She is still having trouble bending her stiff knees but less than a week after coming out being casted for the last three months she is already trying to walk again!!

'The Diva' is slowly making a come back!

We were a little nervous the past few days because Lauryn was refusing to eat and was pretty weak and miserable.  She hasn't eaten since Wednesday night and had been off the IV since Sunday night.  However, things are looking up and she is starting to eat again.  She's not 100% but she is improving everyday!

She is very annoyed with Dr. Van Bosse because she hates the bar that is between her ankles to stabilize her hips.  As far as she is concern it is the root of all evil.  She was cracking us up in the hospital when she was giving the Dr and even a couple of nurses a piece of her mind about the bar. 
The nurses in the the NICU got a kick out of her because she was acting like such an adult and asking questions about what they were doing.  By the third day she was telling them which medication she needed. ('I need some benedryl because my casts are itching.'  'I need the medicine in my arm (IV) not the one I drink' or 'No sleepy medicine!' 'I need ice for my back!') .  Unfortunately, she had a nurse assigned to just her in the ICU and now she thinks that should be me!  ;-)

She has to remain sitting or laying down for the next 6 weeks.  That's got her good and mad too.  Can you imagine trying to explain to a 4 year old that she can't move around independently!?   Even when she had just her regular leg casts she was able to crawl around.  However, the dr wants her still since her thigh bones were basically broken and need to mend without any weight or movement.  We have a wheelchair that reclines to accomodate her but doubt we will be going anywhere in the near future.
Especially with all the flu and strep going around - no point in asking for trouble!

At the end of the day, she has
- had five procedures (on her both hips and both feet)
- with 10-12 incisions in her legs (we lost count)
- spent 4 days in ICU and 1 day in a regular room
- has long leg casts from thigh to toes with a bar between the legs to keep them still.
- she will be in these cast for 6 weeks
- she will be in short leg casts for 3 weeks after that while we wait for new AFO's for her feet

Many people asked why get so much done at once and the reason is to have it all over with.  If we tried doing this piece by piece, she would be laid up for months and months.  Plus I don't know if I'll ever get her back in a hospital again.  We are hopeful this is the ONLY major surgery and don't forsee the need for another one at this point.  Everything we are doing now is to make growing easier and give her as close to normal movement in her hip and foot joints.  We are also hopeful that in the future she can ditch the braces at least during the day!  That is our goal right now.  Lauryn's condition is not progressive and she was at her 'worst' the day she was born - so we can only get better!

Thank you EVERYONE for all your support and kind, encouraging words! It made the time in the hospital so much better. Thank you to our parents for all the help they gave us with the boys. I don't know if Lauryn and I would have made it without Raj with us in Philadelphia and that was possible because our parents stepped in and helped with the boys.

Day 4

She is having the epi taken out in an hour which will FINALLY move us out of PICU and moving to a regular room. She has has cold compresses on her back and hips to help with spasms and swelling.

We counted that she's has about 12 incisions from her hips down to her big toes (literally).

She's politely directing (ordering) everyone! Except with me she isn't so polite! She keeps ordering me to hold her and hug her but NO KISSES! Lol!

The drugs and the pampering service of the ICU Has heightened her diva-ness!

She is slowly coming around. Here is a diagram of what is involved with an osteotomy of the hips. The pins will be taken out in a year.

http://www.hipdysplasia.org/Resource/339/FileRepository/Infant%20Hip%20Dysplasia/Treatment%20Methods/Osteotomy/TES.JPG

Slowly turning the corner

She is a little more comfortable today although it was a rough last 36 hrs. I think the longest I've slept is an hour at a time in the past 48 hrs. Her goal today is to drink and eat something and to sit up. Since they also clipped tendons in her hips they are stiff but necessary to stretch. She can sit up but it becomes painful after a while and she gets spasms. We are hopeful that she will be getting the epidural and foley out tomorrow so we can come home Monday.

I can't say enough about how fantastic the staff here is. They are attentive, responsive and extremely compassionate. Far cry from when we were at children's hospital.

Raj has come to relieve me so I can go rest at the hotel. Will check in later. The following is her in her new wheelchair that reclines!

Great night, rough day...

Last night went smoothly for her. Today her pain management has been a challenge. A lot of 'break through' pain and muscle spasms. She has an epidural right now and needs occasional 'boosters' along with IV pain meds. They are trying to get her comfortable with oral meds - codine and Valium and now it is a matter of waiting for the cycle of new meds to become effective. They plan on keeping her in ICU through Sunday. So we may not leave til Monday at the earliest. I'm staying with her at night and Raj relieves me so I can rest at the hotel for a couple of hours in the afternoon. Of course the anesthesiologist told me the hip surgery is one of the most painful and she had four more procedures on top of that. Considering all she has to deal with she is being expressive and helping us understand where she is having discomfort. She also only cries when a spasm hits. She is pissed that she can't sit up, I can't hold her and she can't go home. But, who wouldn't be. They say the second day is the worst so hopefully she will so better this evening/tomorrow.

She is done!

Dr. Van bosse just came to see us and she is in the pediatric ICU awake and ok. We are waiting to go see her. All the procedures went well... Although they were a little more involved that he planned on. He is happy with the results and that is important. She had tendons nicked in both hips, both ankles and both big toes. Tendons were also transferred/repositioned on the top of both feet. They cut into her femoral bone and repositioned it with pins to get better range of motion and rotate her legs more inward. That is about as Laymans terms as I can get! I will be in the ICU with her for the next two days and won't be answering my phone. Thank you everyone for your thoughts, prayers and words of support! It means more than you will ever know!

Hips are done! Working on her feet...

Got an update from OR at 1:30 and the hips were done and all is going well. They are still working on her feet. Should be another hour or two.

She is in surgery!

Well the day we've dreaded and been anxious for the last year is finally here! She was brave and tried very hard to hold back the tears. No sobbing or anything. They have her some medication to 'relax' her...boy did it so its job. She got giggly and smiley and went back to the OR in the anesthesiologist arms. She really amazed. Instead off trying to be brave for her, she was leading the way. They are going to place an epidural in to block pain to lower extremities and will leave it in for two days. We may not be home until Monday. Depends on pain management. The surgery is about 5-6 hrs so I will update later. Picture is Loopy Lauryn right before we handed her to the anesthesiologist .

The 'LIST' of what she will have done...

As of now, She will probably be scheduled around 10 on Thursday Jan 31. It is a 6-7 hour surgery. The laundry list of what she is having done....

Bilateral Femoral osteotomies - they will be cutting the femoral head (thigh bone) on each leg and moving it into a better position and the pinning it. She have the pins removed in a year. This is to give her better range of motion from her hips and hopefully help her gait too.

Bilateral tendon transfers on both feet - they will take an interior tendon in her foot that is tight and making her foot 'curve' and put it in a better position to correct the foot instead of causing the problem. This is what causes her to go into casts every year...the little sucker won't stop pulling her foot out of position. She will have this done on both feet.

Bilateral Achilles tenotomy - they nick both Achilles' tendons and pull her foot 'up' (or give more dorsiflexion to the foot). The tendons then heal in a more lengthened position. In the past, the tightness of the tendons causes her foot to point downward and also causes her to be casted to stretch it.

Also they will do a tenotomy on the tendon under her big toe on her left foot because the little bugger is also too tight.

She will have an epidural put in place during the surgery to help with pain management and she will be in the ICU while that is in place. Once they can wean her onto oral pain medicine she will be sent to a regular room and from there we should be ale to go home once the pain management is under control. Hopefully Sunday.

This is the most invasive surgery she has ever had done and we are hopeful that it will give her better range of motion, stop the regression (and the need for serial casting) she goes through each year, and give her the ability to MAYBE be able to walk without her braces one day.

Raj and I are nervous, anxious but resolved that this is the best thing for her. Her condition is NOT degenerative, so we can only get her better! Our hope is that all the pain she goes through now will help her as she grows to become stronger and walk independently, without assistance or discomfort.

I will update the blog from the hospital when I can, so stay posted. We leave Wednesday night.
Pictures of the final cast before surgery - soccer players and soccer balls per her brothers request!

Germs, germs go away! We are in the final stretch...

I have officially become OCD about germs. This part of my plan to schedule the surgery in Jan was not thought through carefully enough. If Lauryn gets a cough or fever within the next few days we get postponed for 1-2 months! The problem is that she will need to stay in a holding pattern, of sorts, and will need to stay in casts that entire time. I'm a wreck about this.

Her surgery is in a week and I've basically placed her in a bubble. Her brothers are frustrated with my lectures about germs and telling them to wash their hands.

We took the boys with us Monday up to Shriners to see what Lauryn does during a visit. The hospital just got a donation of toys brought into the clinic to be handed out to the kids. A group of bartenders did a toy drive for the kids and came to deliver them. They were really sweet and loved seeing Lauryn smile at her Little Ponies they gave her. Really brightened the day.

My highlight was watching Jack walk over to Lauryn while she was laying on the gurney. They were getting ready to recast her legs and she started to whimper. Jack quietly walked up and held her hand and whispered, "remember what I told you about counting when you are scared? Lets count to ten and it will go faster..." I almost started to cry. Of course, I tried to slyly get Raj to get a picture and as soon as Jack saw that his gesture of support was being noticed, he gently dropped her hand and moved away.

We also got a tour of the hospital and a social worker talked with Lauryn about her surgery. They let her create a doll, which she named Coco, and showed her how Coco will have a mask out on her face and an IV in her arm. They also casted Cocos feet to match Lauryns!

Here are some pictures of her getting her cast removed, and then her getting them reapplied. There is also a picture of Coco and Lauryn with matching casts.

Cast #3 Go Patriots!

Cast 3 this week was her choice and a surprise for her brother Ryan because he is a Pats fan! Brother Jack asked for purple and black for the cast she is getting today, but I don't think she is fond of the idea.

Cast #2 is Groovy!

Just pictures to post today. In the past I was so frazzled with a baby being casted that I didn't document the process very well so I am trying to do so this time. Also posting pictures of Shriners Hospital in Philly where she receives treatment. It's not exactly in a safe part of The city. The picture of Lauryn playing is in the playroom upstairs. Grammy came with us this time and then of course there are the tye dye casts! Going tomorrow for #3.

One set of casts down... Five to go...

Tomorrow we make another trip the Shriners for her second cast. This has been a week of adjustments for all of us. My biceps are going to give Popeye competition and I will probably bankroll my chiropractor's golf membership when this through. She got a set of wheels three days ago that she loves and even went to preschool where her and her ride were pretty popular! Sleeping is a bigger problem than it usually is, but I'm hoping that that will change as she gets use to it. Right now we are battling the itchies. Overall her attitude is pretty amazing...she questions how she is going to do things but rarely admits that she can't do something herself. She actually was upset when some classmates at school were being helpful. I think her pride didn't approve of the help! Below are pictures from this week of adapting to playing, her friends at school 'being helpful', learning to 'drive' her wheelchair, and bathing in the sink! By the way, she chose the cast colors...

Getting Started

Bare with me as I enter the realm of blogging.  I always wondered why people blog, but in this case I'm hoping to inform and inspire as I share my daughter's latest journey and challenges. (Plus, I realized that if I blog, I don't have to repeat myself to all our friends and family!) ;-)

Just some background for those who don't already know her story... (those who do can skip this...some of you lived it with me and for others I know I've told it many, many times before but it is one of the true miracles of OUR lives).

This was posted to the Caringbridge site we put up when she was born.

Our Story

 

Our family was thrilled when we found out we were expecting our third child. At 16 weeks, we went in for an ultrasound, debating about whether to find out the sex of the baby, and suddenly the sonographer got very quiet. She said she didn't like how 'still' the baby was and that it appeared she had some abnormalities with her legs. She called in the perinatologist and that is when we first heard the term 'arthrogryposis'.

Arthrogryposis (as defined by Wikipedia), "also known as Arthrogryposis Multiplex Congenita, is a rare congenital disorder that is characterized by multiple joint contractures and can include muscle weakness and fibrosis. It is a non-progressive disease. Frequently, the contractures are accompanied by muscle weakness, which further limits movement".

Other issues that set off alarms were the clubfeet she clearly had and dislocated hips. They were also concerned about the position of her hands and wrists.

All these red flags threw us into hell. They talked about Trisomy 18, Trisomy 13, Spinal Muscular Atrophy and about 30 other possible diseases and syndromes that were all fatal. They were sure that whatever is causing the arthrogryposis was going to rear its ugly head in other more lethal ways. I had numerous ultrasounds, an amniocentesis, a fetal echo and a fetal MRI (yes, the do an MRI on the baby while she was still in the womb)!

With each test, we dodge more bad news. With the exception of her lack of limb movement, she was doing great. The good news was that they couldn't tell us what was causing the joint issues....the bad news was they couldn't tell us what was causing the joint issues...

However, some of the real scary possibilities were ruled OUT. We took that as a sign and decided to have 'Faith' that she would be ok. Yes, among all that medical tests and jargon, we found out we were having a little girl. Lauryn 'Faith' was definitely going to be part of our lives.

The rest of the pregnancy was normal, until we got to 36 weeks. We went for our normal routine ultrasound and had another quiet sonographer. This time they said she appeared ok, but stopped growing 3 weeks ago. She was only measuring 4 lbs and they wanted her out. Children's National Medical Center was put on stand by in case they had to medivac her and our family prepared for her arrival. They told me to prepare for the possibility of her spending a long time in the NICU.

Lauryn Faith was born on August 15, 2008 at 8:08 am. She weighed in at a 'hefty' 5lbs 1 oz - a full pound heavier than the anticipated. She did spend 2 days in the NICU because of fluid in her lungs and she clearly had problems with all four limbs. However, she was breathing on her own, healthy and had no other issues! She was holding her head up in the NICU and was clearly stronger than they anticipated - even fighting with the nurses about her tubes.  They told us then we had a ‘feisty one’.

Look at her father's thumb compared to her foot! So small...

 

 

We went from Shady Grove Adventist straight into DC to Children's National Medical Center where they did an ultrasound and x-ray and confirmed that her hips were both dislocated and she was given her first set of long leg casts (thigh to toes) to start serial casting for her club feet.

Over her first 5 months, she went through about 10 weeks of long leg casts, her first tenotomy (‘nicking’ or clipping the achilles heel tendon) at 6 1/2 weeks, braces and therapies.  She was also given wrist braces to straighten out her hands.  We were sent home to 'grow' her for her next set of surgeries and treatments.

We hold out hope that one day soon, Lauryn will be toddling around this house chasing her brothers. She is truly our miracle baby and we are blessed that she is part of us.


First set of casts 3 days after being born

Hip Surgery at 6 months old

Well since then, she has had bilateral open reduction hip surgery (@6 months), a spica cast for about 12 weeks (Chest to toes body cast), a trip to Iowa for a consult with the Ponseti Clinic, an Archilles tenotomy on both feet twice.   By the time she was two, I counted that she had spent just as much time IN casts as she did OUT of casts.  However, it paid off.  She has been walking indepently for over two years now and is very, very healthy. 

Still smiling with Spica Cast at Easter

We finally we transfered to Shriner's Hospital in Philadelphia where she has been treated for the last three years.  Each year her feet have regressed - rotating inward. We have had to go through another round of Ponseti serial casting.  Serial casting is manipulating and stretching the foot to the direction it SHOULD be, and away for the direction it WANTS to be.  Each week she is stretched and then a leg cast from her hip to toes is placed on each leg to maintain the stretch.



After hips were done, back to working on those darn feet...

 

Learning to bath with casts on...fun! 

 

She has been walking independently (and even powerwalking/running) for about two years now.  It is truly a miracle...considering they didn't think she'd even make it home from the hospital when I was pregnant with her.  For that reason I shout from the roof tops how incredible she is and what an inspiration she is to me and to many who meet her.   She is sassy and determined and entirely opinionated.  

Dancing at Disney World @ 2 1/2



Theraputic Horsebackriding at 4 years - favorite thing in the whole world!

Starting Monday, she will begin her next step in her journey.  I will post more later with pictures and description of what is to come...