Fearfully and Wonderfully made


Living with Fixators and their Challenges!
December 12, 2008, 8:17 pm
Filed under: A mother's heart, Life with. . ., Sugeries | Tags: ,

After after having 2 fixators, I have learned a few things.  Simplicity is generally the best option – at least when it comes to dressing and having a fixator.  There are not many options really.  Giovanna has 2 pair of pants that snap up the outside of the both legs and that fit over the fixator.  So the bottom half is taken care of, which leaves the top half.  Since Giovanna tends to like to wear “pretty pink” things, it is helpful that the botton half is a neutral color (black or blue).  She has had fun picking out her tops to go with the bottoms.

But when it comes to going to church, Giovanna loves to wear very girly dresses – the frillier the better!  So different from her mother!  And we live in Minnesota which makes it even more of a challenge to figure out how to make the dress look “Pretty.” 

Sunday was the first time we were home since Advent began and she wanted to wear her new dress for Christmas and wouldn’t you know, it was one of the coldest mornings on record for this year!  So the task of figuring out how to get tights on her to keep her warm was given full attention.  But no matter how I tried to get the tights on, they would not go over the fixator – it was just too big and the wires were sure to put holes in the tights!  So we improvised and cut one leg of the tights off – it was a long dress and you couldn’t tell!  She was all smiles at church with her new dress, tights and nice girl shoes, not tenneys!

However going to play in the snow with a fixator are totally different.  We have lots of new snow which was just calling out to Giovanna to come play in the snow.  So the process of getting her dressed for the outside play time was begun.  First the regualr fleece fixator bag went over her foot, leg and fixator – this was for warmth.  Then came two target bags – to keep things dry and the snow stuff.  Her older brothers pulled her on the sled.  They were going fast enough that she fell into the snow.  She was laughing and having a ball.  It was a glorious time for her.

When she finally got cold, about 90 minutes and 2 brothers completely tired out later, she came in for hot chocolate and then a warm shower.  Life is good for her! 

As I watched her having so much fun, I was reminded of two statements that have been with regard to Giovanna at different points in her life.  When Giovanna first joined our family, we were told that she might never walk.  She has proved the naysayers wrong on this account.  Two years ago when she had her first fixator surgery and went sledding, the therapists said, “is there anything that slows her down?”  God’s fingerprints are all over her life and the evidences of Grace to her from God are amazing.  There is much to be thankful for



A Tribute and My Thanks to God!
March 7, 2008, 11:53 pm
Filed under: A mother's heart

Today, 07 March, marks the 3rd anniversary of the home going of a dear friend.  This man also helped to shape the structure of our family.

In the summer of 2000, Doug Oyen took a team to an orphanage in China.  This team ministered to those who had been abandoned by their parents.  In this orphanage was an American couple that had a special place in their hearts for a small infant with special needs.  The life of that child and this family were forever changed with that trip to China.

I still remember the first time that Doug saw Giovanna stateside.  It was in December of 2002 – about 6 months after arriving here.  She had been through much in that period of time.  Two of my boys were attending an inner city school and we were at the Christmas Pageant.  Giovanna had just begun to walk a few weeks prior to the pageant.  Doug saw her walking from across the room.  It took a second look to be sure that he was seeing what he thought he was  and he was moved to tears at the sight of this little orphan girl, now in a family and walking.  It is an amazing sight to see a 6 foot 6 inch man moved to tears at the sight of a 2 foot tall 2 year old walking.  God had orchestrated many events to make this reunion possible.

Giovanna loved Doug and called him “Papa O” .  When ever she would see him at church, she would run over to her, lift her arms as high as they would go and laugh as he lifted her up into the air as high as he could.  She would have that huge smile that lights up a room.  It was a delight to see them together.

When Giovanna heard that Doug has died,  her response was, “Doug Die?”  Then she went to get the blanket that he had given to her at Christmas time.  She wrapped up in that blanket on the couch and after a bit said, “Doug come car?”  Courtney responded, “No, he can’t come in a car.”  Giovanna was not to be put off that easily and modified her request, “Doug come, big car!”  I am not sure she really understands the whole concept of death. 

When I heard of Doug’s death, I was reminded of a favorite song of mine, I will Glory in My Redeemer.  The last verse of that song is:

I will glory in my Redeemer
Who waits for me, at gates of Gold
And when He calls me, it will be paradise
His face forever to behold
His face forever to behold.

Doug received the call to his true home and is now beholding the face of his Redeemer – forever!

Doug left a legacy.  He told some friends of mine that if he never made another trip overseas, all of his trips were worth it even if it only meant that one girl was rescued and given a second chance.  That one girl, now goes by the name of Giovanna Hua Ming and she is my daughter. It is a precious thought to remember that Doug gave his life to the service of Christ and Giovanna is one of the fruits of his service.

He is missed, but his life has had a lasting impact on this family – forever!



Off to School she Goes!
July 11, 2007, 12:55 pm
Filed under: A mother's heart, Life with. . .
These are the mysteries I don’t understand
I thank you Lord for the people who can
That’s why every day it is off to school I go
‘Cuz the more  I can learn, the more things I will  know

Those are the words from a Go Fish Song called “Planes, Phones and Microwaves.”  These words would be an adequate description of what school should be – a place to learn as a way to increase one’s knowledge.

However there have been many changes in the public school system since I attended many moons ago.  Giovanna is doing summer school this summer for the first time – every day from 8 AM to 11 AM for 3 weeks! 

In some ways, it is hard to believe that she is doing this and excited about it.  But then she is a social little butterfly – except for the first day that she went. 

On that first day, she hid behind my leg whenever anyone spoke to her.  She also cried “a bitsy” as she described it when I left her on her teacher’s lap after all the kids had gotten to her class.  

I understand why this was an overwhelming experience for her – she is the youngest of 10 students.  Most of the kids in her class are high school students – I think she is the only elementary student in this class.  Some of the kids knew each other from the regular school year.  I am not sure how the class assignments were made.  However she was happy when I picked her up on Monday after school.

The morning was pretty chaotic, to say the least.  We had received a letter from the district which changed schools – from the elementary school to the Middle School which is adjoining.  The teacher was supposed to call us before the session began.  However in talking with her she was out of town until late Sunday night and had not done any thing to prepare for this first day – not a good sign in my mind.

The drop off location was not specified and those that were supposed to  be helping us to find teachers/classrooms were not helpful.  So we were pretty much on our own.  So it is no wonder Giovanna was a bit disconcerted regarding “School”. 

She missed the next two days – we were out of town. 

Today she woke up early and was excited to go back.  She knew she needed to bring a snack and water bottle to school and reminded me frequently to get those in her back pack.  She also informed me that she would not cry this time.

The teacher said she did well today and was very talkative.  She had a lot to say about Papa!  However the teacher didn’t understand most of it. 

Pray that these next 2+ weeks go well and that she will actually get make some progress on her reading and  speaking skills. 



Cast Removal and. . . ..
March 19, 2007, 10:30 pm
Filed under: A mother's heart, Surgeries

Thursday was the day that Giovanna went in to have her cast removed and today (Monday) was her 7th birthday. 

 

Knowing what was scheduled for Thursday and what actaully could happen are sometimes two very different things.J.  The last time she had a cast removed was not a pleasant situation and she still remembers that time – some 2.5 years later!  As I began to talk with her about having her cast removed, she began to cry and say, ” No take off.  Hurt.” This statement reveals that it is still a very painful memory.  

 

Upon arriving at the hospital, Giovanna was not in a very good mood.  She normally greets the staff with her winning smile, but not this morning.  She did not want anything to do with cast removal.  I on the other hand knew that it needed to come off as it had gotten wet several times and was not smelling very good! 

 

We got to the cast room and Sarah, having been told of her fears was excellent at telling her what to expect, what she would feel and even gave her the opportunity to let the infant saw “buzz” over her hand, to which she promptly shook her head no.  When the saw first touched her cast, she began to scream and cry, but being intensely curious, she began watching and stopped crying.  The only time she reacted was when Sarah touched her toes to get her bearings – so to speak.  She did really well and the cast was off in about 15 minutes!    

 

Once the cast came off, it was amazing to see her foot – straight and flat for the first time in seven years!  The tears flowed quickly once the cast was off and she stood on her “new” foot for the first time.     As the tear ducts continued leaking, I was reminded of another who cried over this little girl and seeing her walk.  Our friend Doug led the team that went to China and to the orphanage that Giovanna was in.  He saw her for the first time stateside shortly after she had begun walking.  He was also moved to tears by this little one.

 

It is amazing to think of how far she has come in the 4+ years that she has been stateside.  Some of you reading this may not remember what her feet were like when she came.  I have been told that a picture is worh a thousand words – so here is the picture of what her feet look like when she came:   

  mingsmall.jpg

And this is what her feet look like now: 

Post surgery - March 2007 

 

Her left foot is straight and flat – almost perfect – like the master designer’s orginal design.  The right foot still has some issues.

 

The surgeon’s last words, “So I get to do this to her other leg in a few months.”

 

So we will be going through the Ilizarov again – on the right foot.  At the moment the thought of doing this whole thing again is overwhelming.  I know that God will give the grace needed when we need it – not before.  Gary has stated that we won’t even consider doing surgery until after Thanksgiving – he wants Giovanna to have her summer! 

 

Praise God with us for all He has done in this little girl’s life.  She has endured 5 major surgeries in 4.5 years.  Surgeries have become part of life in the Ayers family.  May God be glorfied as we walk through the  next one later this year. 

 

 

 

 

 

 



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.