Fearfully and Wonderfully made

Here we go again!
January 30, 2007, 11:24 pm
Filed under: Surgeries

Giovanna has started round two of antibiotics for an infection.

 I have been watching her incision site for several days and the dripping and oozing was getting worse.  Yesterday while doing her pin cleaning, it just didn’t feel right.  The scab over the incision was sliding around – never a good sign.  It also had a distinct smell to it.  After much fussing on Giovanna’s part and much sterile saline plus hydrogen peroxide, we got the scab off and underneath was a lot of yucky stuff.    Straight hydrogen peroxide was used to clear out as much of the infection stuff as possible.

Today, since we were at the hospital for therapy, I asked one of the PT’s to look at the wound.  She was concerned and said someone needed to look at it.  There were lots of calls made and finally the decisive answer – “yes she has an infection and needs to be on antibiotics as soon as possible.” 

The timing of this particular infection proves to be interesting.  It has been able to grow for a period of time without being detected.  So the big concern is will one round of antibiotics get the infection under control and kill it before the surgery date of 12 Feb?  Only time will tell for sure.

I have been reminded of Jeremiah 29:11-13, “For I know the plans I have for you, declares the LORD, plans for wholeness and not for evil, to give you a future and a hope. Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me. When you seek me with all your heart.”  God’s plan for this surgery have been set since the beginning of time.  What remains to be seen is if the date we picked is the same one as God! 


What is Arthrogryposis?
January 13, 2007, 9:21 pm
Filed under: Arthrogryposis

Some of you have probably been wondering why we have chosen to do such a thing as a bone lengthening procedure on this little girl.  The answer is a bit of a story.

When Giovanna was born, because of her deformed arms and feet, her parents abandoned her – most likely to give her the best chance at getting the help she needed and they couldn’t afford.  We had a vague idea that she had some issues, but were not aware of the extent of them and it was not easy to determine from half a world away.  We had asked for a physical exam, but there was not a lot of information that made a lot of sense.  There was some mention of the term Arthrogryposis – but only in passing. 

When I talked with a friend of mine who works with special needs kids, her response was so positive.  “If she does have arthrogryposis, she will be really fun to work with.  They are the type of kids that you just show them what you want them to do and they figure it out.  I just write down what they do as if that is exactly what I wanted them to do.  They are really smart.”   

This should have been an indication that we were in for an interesting time.

Once Giovanna was stateside, the diagnosis of arthrogyposis was confirmed by the upper arm specialist.  So now we have both an upper and lower limb specialist that we see twice a year. 

The medical definition of arthrogryposis is (1) the permanent fixation of a joint in a contracted position; or (2) a congenital disorder marked by generalized stiffness of the joints, often accompanied by muscle and nerve degeneration resulting in severely imparied mobility of the limbs.

In layman’s terms – a stiffening of 2 or more joints and it is symetrical on both sides.

It is not progressive like other disorders- it does not get worse and with therapy there can be improvement.  Giovanna is considered mild to moderate with the disease.  Most with this disease can hardly move their affected joints much in any direction without a lot of pain.  Giovanna can be physically  manipulated through a full range of motion with little, if any pain.  However she has more joints affected than others.  Most have either legs or arms that are fairly limited in their mobility.  Giovanna has feet, ankles, knees, hips, hands, wrists, elbows, and shoulders affected, plus we now think it is her mouth and thus affecting her speech. 

So with that as background. . .

Giovanna came to us with bilateral club feet.  We have been told that in China her thumbs were bent back, almost touching her wrists.  However they did brace these and pull them into a position that was fairly functional.  The feet however needed some work.  She has had 3 surgeries on her left leg/foot – two of which can be considered failures and left her left heel at least 1.5 inches off of the ground.  We knew that there would be another surgery – it was just a matter of when.

So this summer when Giovanna began to complain of pain in her left leg – it was an indication that the time for the next surgery had come.  She has been walking on her tip toes for a little over 4 years – not the way the body was designed to workd by the Master Designer.  For her, it was like walking with shin splints every day and they were getting worse.  She is not a sit still child so when she began to sit, rather than run with the other kids because of pain, you know something isn’t right.

When Giovanna was asked about the surgery, her response was always the same, “Me no want!”  Because of the intensifying pain, the surgeon said, “sooner rather than later. ” We had hoped to put this one off until between ages 8-10.  God had other plans.  This gives her the best chance of having a flat foot. 

So the date was set and we are now waiting for God to determine if this will be the last one, at least for her left foot/leg.  Her right foot, which is not as bad will still need something to correct it.  The surgeon is not sure what he wants to do. 

So we wait and pray to see what God will be pleased to do.

Some pictures of Giovanna’s surgical path
January 9, 2007, 4:11 am
Filed under: Life with. . ., Surgeries

It has been a wild ride over the past 6 weeks – Giovanna has had much to deal with. Her emotions have ranged from anger to frustration to trying to get as much done for her as possible. She has now gotten to the point of getting around very well. 

Here are some pictures taken along the way:


Five weeks Post Op
January 3, 2007, 9:30 pm
Filed under: Surgeries

God has graciously helped us to survive the first 5 weeks of Post op recovery and distraction. While these 5 weeks have been full of challenges, there is much to be thankful for. Praise God with us for the following:

*Giovanna is up and walking sans walker. We have told her that she should use the walker in busy places like church.  However this little spitfire has a mind of her own and decided at church this past Sunday she didn’t need it even at church.  God was faithful and did protect her.  She loves having her freedom back!

*She has been out enjoying the newly fallen snow – on a sled pulled by one of her siblings.  We purposefully chose winter to have this surgery because Giovanna typically does not spedn much time outside in the winter.  She gets to cold to fast so she doesn’t go out much or at least for extended periods of time.  However this winter has been really mild and she really missed being outside with the kids.  So when the snow hit on New Year’s Eve Day – it was just to much.  She was determined to get out there and play.  She enjoyed every minute she was out there!

*Corrie has gotten much faster at cleaning the pins.  It now takes only 20 minutes instead of the 45-60 at the beginning!  She has also found that it is much easier to clean pins at 2 or 3 in the aftenoon when the sun is shining than after 5 when it is in the process of setting.  It also helps that Giovanna has stopped fighting and helps with the pin cleaning.  She has 3 levels of fixators – one close to the knee, which we call the 2nd floor; one near the ankle which we refer to as the 1st floor and those on her foot which are the basement.  Giovanna gets to pick which “floor” gets cleaned first.  Over time, she has developed her own system of the way she likes those pins cleaned.

*The infection has cleared and she is off of the antibiotic.  She is basically off all meds, except for regular Tylenol once or twice a day.  The med chart is now a thing of the past!!!

We were in for a post op check up today.  She had X-rays and then saw Dr. Guidera.  We have 2 weeks of bone lengthening left!!! Once the foot is flat – the fixators stay on for a period of time (generally 4-6 weeks) to allow the new bone to harden.  Then into OR for them to come off.  When asked if the fixators could be off by 18 Feb which is Chinese New Year – the response was, “If I can make it work, I will.”  Please pray that all would be content with whatever decison is made regarding the date they come off.

*Giovanna was also released to go back into the water for swim therapy.  We are hoping to being next week.  She is excited about getting back into the water and seeing her friend Dasaith again.

*The skin around some of the pin sights is looking pretty rough.  We have had to use hydrogen peroxide when the infection hit and still use it about 2-3 times a week.  It takes a toll on sensitive skin.  Pray that the skin would not degrade to much.

God has been good at giving all of us patience during these past 5 weeks.  We have been content to be at home during these weeks.  It has been amazing to watch Giovanna work through issues of anger, frustration and come back to being her cute funny self.  She has regained much of her humor again and we have much more laughing than crying these days!!!  It has been a trial that I would not have willingly chosen, but God knew the best timing for such an event and we have all grown deeper in our dependence on Him during these weeks. 

Thank you for praying our family through these deep and challenging waters.  May God grant you a good beginning in this new year.