Fearfully and Wonderfully made


We have been hit. . . .
December 24, 2006, 4:00 pm
Filed under: Surgeries

What do these things have in common?  Excess drainage from a pin site, tender red area on the foot, low grade fever for serveral days and a restless night . . . .

Infection is beginning in her foot.

I called into the hospital this morning and talked with one of the nurses who had Giovanna when she was in.  She did remember her – as the really cute one:-)  She took down all of the symptoms and called the on call doc.  It didn’t take long for them to decide a course of action – 7 day round of antibiotics and pin cleaning 2x/day – at least the affected sites.  This is not something Giovanna is excited about. 

However, she is a great medicine taker -which helps make some things easier.  Not only does the pin need to be cleaned twice now – but I have to add Hydrogen peroxide to the sterile saline.  Tonight she got a longer shower so that we could get the pin site cleaner and soften the drainage to make the cleaning easier. 

So now the living room is really beginning to look like a medical ward!!!! 



There is Much Rejoicing today
December 21, 2006, 7:30 am
Filed under: Surgeries

There is much to be thankful for today.  Giovanna went in to for a post op check up to see how things are going.  It felt like a mid term review and in a way it was. 

We are now 3.5 weeks after surgery and 2 weeks into the bone lengthening phase of the procedure.  Much to our amazement, Giovanna began sleeping through the night at 2 weeks post op- this generally has not happened in the past for at least 4 weeks post op. 

We were in for the 2 week check up and X-rays.  Dr. Guidera was really amazed at what he saw.  The foot is moving quickly into place and there is a chance that when she goes back in 2 weeks that we will be able to stop the pin turning.  Once that happens, the fixators stay on for a period of time to allow the bone to harden and get stronger.  Our next trip to OR could be to remove the fixators – maybe in February.  This would be a month earlier than anticipated.  We had been praying that the fixators would be off before her birthday in March – now there is a chance that they could be off by 18 February – which is Chinese New Year!!  God’s mercies have indeed been great.

It has been an amazing ride the past 4 weeks.  First the trip to Pearlington where all one could do was stand back and watch God work through 8 children, ages 6-15.  It was an awesome trip.  Then moving quickly into Giovanna’s surgery, recovery and the bone lengthing process.  I have learned to count on God’s good and new mercies every morning.  I have gone to bed exhausted every night, wondering how I will make it through the next day.  I awake refreshed and ready to face each day with its challenges.  God had indeed been gracious.

It has been hard at time and there are days when I would prefer to have my old life back – what that really means is that I wish Giovanna did not have to suffer and go through this painful process.  However, my brain knows that it is for the greater good of her being able to walk on a flat foot – but it is never easy to watch one of your own children suffer.  This does give all in the family a chance to walk the life mentioned in James 1:

Count it all joy, my brethren, when you meet trials of various kinds.   For you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.   

I have seen my children joyfully do whatever has been asked of them during this time.   We have been blessed with wonderful meals by our church family.  I have seen Giovanna work through her fears.  We have not lacked through this time – we have been blest by the joyful service of others. 

I have spent this advent time reflecting on the lives of Mary, Jesus’  mother; Elizabeth and Anna.  All were at very different places in life at the time of Jesus’ birth.  Mary had a heart that was willing to listen and obey;  Anna had a heart that was willing to encourage and mentor her young cousin.  Anna had a faithful heart that held to the promises of the coming Messiah and when she saw him, she heart was rejoicing at God’s provision.  I pray that as I walk this path with Giovanna, that I will model all of these things to my children.

While we have gotten a good report today, there is still a long way to go and the potential of an infection is still a very real concern.  Continue to pray for the bone lengthening process and that we could avoid an infection.  Dr. Guidera was pleased witht he pin sites today – some of the best that he has ever seen.    Also please pray for safety.  Giovanna is getting stronger and is doing much more walking.  At home, she walks with out her walker.  When we go out, for her safety, she is either in her wheel chair or uses the walker.  This is mainly because she has 2 pins in her tibia and if she fell, these could shatter the tibia – not something we are willing to gamble with. 

We are very thankful for all of the prayers, meals and support we have had running kids, etc.  There will be a big party here when the fixators come off!



Could we be the first?
December 11, 2006, 10:15 pm
Filed under: Surgeries

Leave it to us to have something that has never before happened to one of Dr. Guidera’s patients.  Giovanna had the nut/bolt come off one of the “pins” we use to lengthen her heel!  It was fine Sunday morning when we did the pin turns, but by the time she went into the shower to clean things off and get ready for the pin cleaning and turning – it was dangling in mid air – attached to absolutely nothing!!

Well we did find part of it -but the nut and screw were never to been seen – at least up until this writing.  Gary was willing to try to fix it – but Corrie was not willing – as this is the bolt that is used to for lengthening!  So a call was made to the hospital and the lovely voice at the other end got all the details and said she would find out what to do.

 The one call doctor didn’t even want to try to deal with it.  No surprise here.  However, she did get a call through to Dr. Guidera who said to get in around 8:30 and he (or someone) would take care of it and not to turn pins.

When Giovanna heard she had to go back to the hospital – she panicked!  She was so worked up that she couldn’t tell us why she was afraid – we assume that it was fear of more pain.

Traffic was the worst I have seen and it took much longer to get in this morning.  We met Donald Duck, aka Chaz, the PA that works with Dr. Guidera.  He picked on the fact that Giovanna was afraid and explained everything that he was doing, talking like Donald Duck.  Giovanna didn’t really catch the significance of this since she has never seen Donald Duck!!! Chaz also took care of all the pin turns from last night and this morning – so we are good until evening!!!  He also checked all of the nuts and bolts to make sure everything was tight.  He had never ever seen this happen before.

This actually turned out to be a blessing in discuise.  Giovanna has been cleared to bear weight on her foot, but has refused to walk.  We saw her therapist while there and I told her that Giovanna was not walking.  She said we would have to talk next week about scheduling her for weekly therapy and getting her walking.

We got home and she has been asking for the walker – she has walked around the living room about 2-3 times now.  She heard and understood all that was said and really does not want to go back to the Shrine Hospital!!



Concerned Friends – Near and Far
December 9, 2006, 10:30 am
Filed under: Life with. . .

Giovanna is blessed with many friends who care about her and how she is doing. She has received lots of cards and they are all taped to her bedroom door.

One little boy in her Wednesday night class at church came to church the first Wednesday night after her surgery and was surprised that she was not there. Courtney works in that class and asked him if she could help him.  He had made a special card for Giovanna and wrapped it in Christmas paper and wanted her go get it.  Courtney brought it to the hospital after the class.  Giovanna opened it immediately.  She loved that card and has looked at it many times!

We have also been blessed to have gotten to know a family from Sri Lanka.  To really understand this story, you need some background.  Dasaith and Giovanna have been taking swim therapy together for a little over a year.

I don’t really remember when Dasaith and his dad began coming to the Shrine Hospital. But whenever I got there early, which was rare, Dasaith’s dad would always smile and say, “Please sit here” and point to his chair. There was only one chair, and since I was taught to respect my elders (He had grey hair), I did.  I always held the door for him to make it easier to wheel his son out of the pool area.  Sometime later in the fall, Dasaith’s mom began coming.  It was always fun to watch them interact with Dasaith.  Dad would always talk in English and the mom in their native tongue.  Since there were now two chairs, Dasiath’s dad still gave me his chair.  

We developed a pattern when Dasaith was starting to walk up the ramp to his wheel chair.  His mom would take off her shoes, roll up her pants and run to the shower to begin warming up the water, his dad would get the wheel chair and I would hold the door.   Then in December 2005, the therapist asked me to bring Giovanna in early so that she could use Giovanna as an example for Dasaith.  Getting there early seemed impossible – we barely made it on time.

However, after Christmas we did get there early and there were now 3 chairs.  I got to know them a bit more and there was a wonderful story behind all that is seen.  The Star Tribune, a local newspaper had just run an article about this family called, “It’s a miracle”.  They have an amazing story about how they ended up here – one in which God directed all their steps until our paths crossed at the side of a pool with our children learning how to swim.

There was much in common between our two kids.

 

In early January 2006, there was a lot going on in our family and we missed a week of swimming.  I did not think much about it until the following week when we came back. 

 

When Giovanna and I walked through the door to the pool, Dasaith’s mom greeted us loudly, with a big smile and said, “Where were you last week?  We miss you.”   Little things like holding doors, saying hello and listening to a family’s story in broken English mean much to ones that have given up everything so that their son could get the medical care he needs and walk for the first time in 13 years!

 

Now as I watch this gentle giant named Dasaith and this petite boisterous Chinese girl in the pool, I understand that I am watching a miracle.  It is a miracle to watch two children that weren’t supposed to walk, according to human experts, walk, swim, smile and laugh because an amazing God has worked many miracles.  One in bringing one family halfway around the world for medical help they couldn’t receive in their country to see hope in the face of another.  This hope comes from one who also traveled half way around the world to become part of a family who did not give birth to her but God prepared for her to give her hope – hope that she can now share with others.

 

So when we did not show up for Swim class on the 28th, Dasaith was worried.  We rarely miss and we always tell them when we will be gone.  The swim therapist told them that Giovanna had surgery the day before and that she was still in the hospital.  After the class they stopped by, but Giovanna was not doing well.  She was really fussing – this only heightened Dasaith’s concern for her.

 

Thursday they were back for therapy and tried to stop by again.  We were right in the middle of something and I said we would stop by rehab.  Once we got there and Dasaith saw that Giovanna was OK – he settled down.  The connection between these two kids is amazing.

 

But the most amazing thing happened as we were leaving.  Dasaith, who is buddist, looked at Giovanna and said, “The Lord will take care of you.”

 

 

 



How are you Doing?
December 8, 2006, 9:00 pm
Filed under: A mother's heart, Surgeries

That is a frequently asked question but not one with an easy answer.  There is a lot going on physically in the house and mentally in my  mind as I relfect on the events of the past few months. 

The most obvious answer is that I am very tired.  The only description that I have for the way I am feeling is after one brings home a new born and there is little sleep, but much activity – we call that here the “Newborn fog”.  We as a family are in a high maintenance mode with Giovanna and the nights can be good or bad – it just depends on Giovanna’s mood/pain issues and muscle cramps.  Pain meds don’t help fiesty children cope with attitudes!

Life now revolves around the new needs of Giovanna.  My kitchen wall has a new chart to help me keep track of meds, therapy and pin turns.  The pain meds are color coded so that both Gary and I are on the same page and to insure that we don’t overdose Giovanna’s meds.

The pin turns are actually going well, all things considered. She does not seem to mind these.  Her heel however, is a bit tender as 2 of the pins (actually they are nuts and bolts on screws) are pushing the heel down to lengthen it and one pin is pulling up the toes. 

Pin cleaning is something else entirely.  I have finally succombed to bribery to get her to stop kicking me when we do this.  If she does not scream and fight, whimpering is ok, she gets Hot chocolate.  We currently have some gourment chocolate in the house and she gets to pick.  It worked wonders the first time – she actually helped get things ready during the pin cleaning and we did it in 20 minutes in lieu of 45 minutes. 

I have been asked if our house is wheel chair accessable.  The short answer is no.  The long answer is even though it is not, and it doesn’t appear that God is not going to move us into a different house and now is not the time to do a remodel job, we are making due.  However there are times when it would be easier on my back to have some rooms bigger – especially the bathroom.  The bathroom is really small and even though the wheel chair might actually fit through the door.  There is not room to manuvere once it got in.  So when Giovanna needs to use the facilities, I carry her into the bathroom.  Thankfully she is petite, but she has grown a lot since her last surgery and my back is beginning to feel it. 

The mental processing is a bit harder to describe.  There are many times during the night that I wake up in a panic, thinking that I have turned the pins the wrong way.  I then have to go through the process several times, assuring myself that it was done correctly.  Satan can be horrible with these kinds of thoughts.  

It is also a different type of mental process when I actually linger in thought on the fact that Gary and I actually made the decision to break bones in order to lengthen bones.  It might be one thing to have a bone break, but we intentially told the surgeon to do this.  And it is not the first time we have made such a decision.  There are times when it is very hard to deal with this emotionally and then the brain kicks in and reminds me that it is for the greater good that we are doing this.  It is still not easy. 

As one ponders more on these things, the best answer to the question, “How are you doing?”  is Better than I deserve.  Better than I deserve because God’s mercies are new every morning (Lamentations 3);  God’s grace is sufficient for me and his power is made perfect in my weakness (2 Corinthians 12:9); God is producing character through this process (James 1:2-8)

So now I have a ready answer for this question – life has been hard, God is good and I am doing better than I deserve.



The New Rythmn of Life
December 7, 2006, 10:15 am
Filed under: A mother's heart

Because Giovanna is highly functional and figures out how to do most things, I have never really thought of her as being handicapped.  She is very strong willed and determined.  She has always been able to keep up with her siblings. 

Many others also do not look at her and see a person with disablities as witnessed in her Sunday School class.  I had some friends come and talk to the class about disabilities and then more specifically what Giovanna is now going through and the fact that she will be in a wheel chair when she comes back to class.  When the class was asked who in their class had a disability – not one child thought it was Giovanna. 

Life, post surgery, is very different.  The family schedule is somewhat dictated by the schedule for meds(every 4 hours, on the dot), therapy twice a day) , pin cleaning (once a day preferably after her shower in the evening)  and turning (two times per day).  She can no longer take a shower or go to the bathroom by herself. Clothes need to be adapted and the list goes on.  We have added to our household items a wheel chair, a walker and a bench for taking showers on.  Hand sanitizer is a must in the house these days. 

One of the current projects is to design some sort of covering  for her left leg and foot, after all it is December in Minnesota and it has finally gotten cold here.  Shoes are not even in the picture at this point.  She is very fashion conscious so will need to make sure her fleece boots will match her dress!

The days at our house look very different.  The household begins to  come alive around 6 AM and if it has been a difficult night, I leave the couch where I have spent some part of the night and go to bed to catch a few more winks.  Once Giovanna wakes up around 8 or so, it is time to really start the day.  Pain meds are the first thing that Giovanna wants to ease the pain. 

Then comes the stretching.  This can be be a difficult time if she is sore from the day before.  There are only 4 stretches that she needs to do, but sometimes it feels like many more.  She is beginning to get used to them and she enjoys some more than others.  With the stretches comes the first round of pin turns.  These are a bit more painful and generally someone needs to hold her other leg – or I will be kicked and bruised.

Sometime during the morning comes school for Geoffery and Giovanna – much streamlined and focused on only the essentials.  Giovanna is just beginning her phonics and so she is excited about this.  I am content to have her do craft projects.   

The afternoon is a time to relax and for me to get a nap when Giovanna takes hers.  Late afternoon or early evening comes her favorite part of the day – her shower. 

We have had to modify our shower -there is now a hand held unit for her to use.  She also has a bench to sit on – like those that some elderly use or those who are recovering from a broken hip.  Courtney generally puts on her swim suit and joins her.  Courtney’s job is to make sure that all the pin ports get throughly rinsed and any that have dried blood on them, foamed with antibacterial soap.  After the shower comes the thourough pin cleaning and the second pin turning of the day.  After that – Giovanna can relax, no more needs to be done. 

During the pin cleaning which seems to be the most distressing for her, I have actually began to bribe her into being calm.  We have some of those gourmet chocoolates in the house and if she does not scream and kick, she can have hot chocolate after.  Last night it worked great.  Not only did she not scream, she actually began to help with the pin cleaning.  Such a difference from previous nights.  Pray that this will become routine – not a grind.

Through out the week of surgery our family has been blessed with friends who are willing to pick up the loose threads and lend the helping hand where ever needed.  Gary and the kids have gotten meals, help running kids from here to there.  Giovanna has had many visitors in the hospita – which really did help distract from the pain!  Her favorite part of the hospital visits was having people sign her “blankie” that Courtney gave to her for such a purpose.  Since there is not cast – the blanket has become the canvas for all to sign, draw or encourage her in the way they feel led. 

I have tried to take most of the night shifts during the week whild Gary generally takes the weekends.   However Gary sensed that I was beginning to border on exhaustion and he has taken some of the week night shifts.

Sleep does wonders for regaining perspective as well as attending the Women’s Christmas brunch at my church this past Saturday.  There I saw my friend Deb whose 6 year old daughter is dealing with a rare form of cancer.  Deb is still smiling after 4 months of Chemo for her daughter and can say that God has been good.  Two other ladies are struggling with cancer and even though life has been hard, they are still laughing, filled with joy and enjoying life. 

Giovanna’s struggles are not life and death – but character producing in both her and the rest of the family.  While my brain knows that this is for the greater good of giving her the best outcome long term, my heart almost breaks as I see her struggle with pain, muscle cramps and fear.  May God be pleased to use this in her life to produce a strong life-long faith in Him.

Life is very different – but God is good.



So What is next?
December 4, 2006, 6:30 pm
Filed under: Surgeries

Now that we have gotten this new appartus and have come through the first week of Post Op, what happens next?  Many have asked this question.  It is not an easy one to answer – but here is the plan, at least for now.

The Ilizarov Apparatus (or science fiction on Gigi’s leg)

This picture shows the Ilizarov apparatus or as a friend referred to it as “Science fiction on her leg”.   There are about 20 pin ports that need to be cleaned every day – to reduce the chances of infection.  However I have been told that all kids who have this procedure will get at least one infection.  Please pray that we would not have to go through an infection.   I am using some essential oils that are natural antibiotics to help fight against this.

The top two rings on her leg are mainly for support of the foot.  These are mainly for later when she feels strong enough and the bones have begun to knit back together, to support the foot when she is able to bare weight and begin to walk.  This will also help the healing process.

The picture may not show the detail clearly – but there are 3 screws which have blue caps.  These pins are to be turned 2 times each day – each time being turned 1/2 turn.  A really small crescent wrench is used.  The trick is to make sure she has been medicated at least 20 minutes prior to doing this!

Since I am somewhat mechanically challenged, Dr. Guidera put tape on each pin that needs to be turned with arrows pointing which way to turn the pin.  He also put nail polish on the nut that is doing the work of either distraction(lengthening) or compression(shortening).  He actually had a really good time watching me try to do this.  Giovanna being the spit fire that she is, let us know that she did not like this process one bit. 

Dr. Guidera was concerned about her fiestiness and said that if she continues to fight he will take her into OR – turn the bolts  up to the half way point.  Let her rest for 2 more weeks and then go back into the OR and finish the job.  This is not ideal – but given her personality – it may be the way this procedure is done.

The goal of this process we are now in called distraction is to pull the toes up and lengthen or lower the heel.  Thus flattening her foot so that she can walk with out pain.  This process takes about 12 weeks – give or take.  Once the actual lengthening is completed there is time in the fixators to allow the bone to harden and then a cast for about 6-8 weeks to keep the bone in place and weight bear (i.e. walk) allowing for more time for the new bone to harden.  The walking actually helps the bones to heal faster and better.  What an amazing design by the Master Designer – God himself. 

Giovanna was discharged from the hospital today at 3:30.  When I told her we could go home, she said, “No stay here.”  We are both glad to be home and getting back to a new routine – more on that later.