Thursday, March 15, 2012

Our First Visit to Shands

Today we took Dima to Shands in Gainesville, FL for a surgical consultation with a general pediatric surgeon.  The purpose was to discuss the hernias that Dima has in his abdomen and groin as well as see if Dima was going to have to be circumcised.  Overall the appointment went very well, we loved the surgeon, and we had some good news; and one surprise.

Getting Dima to any sort of medical appointment is a skill set that only other parents of children with special needs would understand, especially fellow Reece's Rainbow mommas.  Given Dima's lack of medical care over the past 7 years of his life, he has had to see lots of doctors and go through some uncomfortable procedures.  In January we started off with the dental work that needed to be done and that was rough on all parties involved.  From that point on, any time we have had to take Dima to a doctor he gets rather upset- understandably.  Today was no exception.  We had prepared him last evening that today we would be going to a doctor so upon his feet hitting the floor this morning, all he would say was, "Boyashchiĭsya!".  In Russian that translates into, "Afraid!".  Poor little guy.

On our hour long ride to Gainesville poor Dima's tummy was upset and he had to stop a few times to use the bathroom.  I seriously was not sure that we would make it on time!  But we eventually made it to the medical plaza.  As soon as Eric stopped the car to drop us off at the front door Dima started to fuss.  He was not going to have any part of seeing another doctor.  I gently reassured him that everything would be O.K. and we made it to the second floor.  At the door to the office, however, Dima began to wail.  To hoot.  To holler at the top of his lungs.  My initial knee-jerk reaction was to try to get Dima to stop, but then I looked around.  Over 90% of the patients were little ones with special needs.  Tears sprung to my eyes and I instantly felt relieved.  Dima was in good company.

The nice receptionist at the front desk got us checked in lickity-split and Dima was eager to get away from any human that was not mama ASAP!  So we sat down and he wailed some more until daddy came to save the day.  Eric got out the iPad and the two of them played Hungry Monster until we were called back.  As the two of them played their game I looked carefully around the waiting room.  I saw maybe one typical child and the rest all had one special need or another.  Gratitude overwhelmed me as I thought about all of the little ones waiting for families who also desperately need medical care.  Friends, we are so blessed here in the United States with the availability of medical care for our children it is not even funny.  Many of the children were in wheel chairs and I watched their mothers attentively tend to their needs.  Once again my mind wandered back to some special little faces that I met while we were in the Ukraine.  They all deserve the same love and attention.  My next thought was that this would be a rare sight to behold in the Ukraine- a waiting room full of special needs children!  Tears clouded my vision and I just thanked the Lord in my heart for all that He has provided for our family and for Dima.

We were soon called back and it was time for Dima to be weighed and measured.  The nurses all flocked to see this spunky little boy called Dima.  Why did he not speak English?  Why was he so tiny for being almost 8?  Did he really survive a Ukrainian orphanage?  Did our family actually choose to adopt a child with Down Syndrome?  Eric and I were so blessed to be able to share Dima's story with anyone who would listen and share the ministry of Reece's Rainbow.  This was a very eye opening experience for the nurses.  I was so pleased to share with them that Dima has gained over 10 lbs. since his arrival home six months ago.  The nurses gasped.  He only had weighed 34 lbs.  He is now almost 45 lbs!

After that excitement we were taken back to an examination room.  Shands is a teaching hospital affiliated with the University of Florida so we saw a new doctor and a med student.  They took some of Dima's medical history and did an initial exam.  The new doctor, we'll call her "Dr. K.", was just flabbergasted at Dima's history.  I think she truly thought we were nuts but she kept giggling at Dima as he tried to make her laugh.  I mean really, how can you NOT love Dima?  The med student, whom we will call "Dr. A.", was so kind and sweet with Dima.  He let Dima do fist bumps, high fives, and Dima even got to tickle him.  So far, so good.

Dr. K and Dr. A took a look at Dima's abdomen first.  After them asking several times just where this abdominal hernia was, they could not find it.  The embassy doctor in Kiev had made me feel exactly where it was so I offered to show them myself.  I poked on the spot where I knew that it was and put Dr. K's hand there.  She poked.  She prodded.  She shook her head and said, "No, there is no problem there. It is possible that it has corrected itself."  I was so happy!  What wonderful news!  One less place that needs to be cut open!  With all of Dima's active play outside he strengthened the abdominal muscles.  He has also gained weight and is not malnourished.

Next was Dima's groin.  There is indeed a hernia there and it is in need of being fixed sooner rather than later.  Apparently if this was left alone and not taken care of, there could be future bowel obstruction.  That would NOT be good.  It will also be in Dima's best interest to be circumcised since he is not very good at keeping his winky clean.  At that point the actual pediatric surgeon came in.  We will call him "Dr. I".  Dr. I was excellent with Dima and also examined the abdomen and groin.  It was then confirmed that yes, Dima will absolutely need surgery on his groin and not his abdomen.

As Dr. I was asking about Dima's neck and breathing, I mentioned that Dima's tonsils were HUGE and I hoped it would not cause a problem with Dima being put under anesthetic.  No sooner did I finish my sentence Dr. I determined that the tonsils would be a more pressing need and that the tonsils, adenoids, circumcision, AND hernia would all be taken care of in one fell swoop.  In other words, when Dima has surgery, it will be all done at once.  OUCH!  So in the next week or so we will return to Shands to have a consult with the pediatric ENT and then schedule the big surgery from there.  Dr. I. was so adamant about getting this all done at once he said that if we did not hear from the ENT by Wednesday of this coming week, to call him and he will personally call the ENT and get the appointment.  Eric and I were floored!  What a wonderful doctor!

Now I'm sure that some of you are thinking, "Oh my stars!  Poor Dima!  All of that at once?!".  Yes, poor Dima indeed.  But friends, you must realize that 7 years of medical neglect is serious.  You see, if we had not had the hernia in Dima's groin checked it could have led to something much more serious.  If we neglect to have Dima's tonsils removed he will only continue to have trouble eating solid food.  One cannot possibly fathom the seriousness of medical neglect until you see with your own eyes.  Dr. I. was in complete agreement that the neglect that Dima suffered simply because of his circumstance took a little bit of a toll on his little body.  He, too, like the nurses, was so intrigued by Dima's story.  Dr. I and Dima became fast friends.

Our appointment was over seemingly as soon as it begun and we soon found ourselves walking back out.  As we were exiting Dima stopped a few times to talk with some of the other little ones that were there to see one of the doctors.  One little boy in particular caught Dima's eye.  He was a little boy who looked to be about 9 in a wheelchair.  The little boy was strapped in and was wearing a helmet and an older gentleman was standing next to the little boy.  Dima went right over to the boy and said, "HELLO!  I love you!".  The older gentleman was so touched by Dima's kindness and introduced the little boy to us.  The boy's name was Reece.  Again, tears spring to my eyes and I shared with the man that we found Dima through a ministry called Reece's Rainbow and briefly told him about the ministry.  In turn we learned about Reece and how he was blind, could not hear well, and not really "all there".  It was just one of those divine appointments and we were so grateful to have met Reece.  When we were back on the ground floor exiting the medical plaza a blind, older woman was sitting in a wheelchair and she looked utterly miserable.  Dima marched right up to her and said, "HELLO!  I love you more!".  The dear woman's face just lit up and while she couldn't see Dima, we could see that her day had just turned around.  It brought us joy, too.

Since Dima was so well behaved and kind to others we rewarded him with lunch at Olive Garden.  His favorite food is spaghetti.  It was a super special treat indeed as he just savored every moment and every bite of his meal (and some bites of our meals, too!).  Eric and I were just in awe at how much he has grown in a mere six months.  Again, gratitude overwhelmed our hearts and Dima led us in prayer.  While Dima's speech is not always clear, and at times he still chooses to use some Russian and Ukrainian words, we could hear plain as day that he prayed for the doctors.  We were speechless.  Friends, all I can say is that with God, ALL THINGS are possible and in six month's time Dima has learned how to pray for others.  WOW!

Gratitude seemed to be the theme of today.  Gratitude for medical care, gratitude for Dima being a part of our family, and gratitude that Dima is in a society where he is loved and accepted for who he is, not warehoused away somewhere left to die.  We ended the day with the first swim of the year in our pool and we had fun splashing in the chilly water.  Life for our family is just so much better for having Dima in it and the experiences that come along with having a child with Down Syndrome.  Down Syndrome is not what defines who Dima is, but it is certainly part of who he is.  God is using that aspect of Dima's life and blessing so many others as a result.  I then think of the family in Oregon who sued their doctor for the wrongful birth of their daughter with Down Syndrome.  Really?  She was a mistake?  Because the God of the universe makes no mistakes.  I am grateful that Dima is ours.


Rochelle said...

Thrilled to hear that his surgeries will all happen at once. He will bounce back in no time! Let us know the date we will begin praying for him.

Leah S. said...

Hi there! I just found your blog. I'm mom to three kids with DS. Angela is turning 16 next week, then Axel 11 adopted from Serbian in December 2010, and Asher 7 1/2 adopted from Serbia December 2011. When we got Axel a little over age 10 he weighed 42 lbs and was wearing size 4/5 clothes. That was 18 months ago. He now weighs 63 lbs, has grown 14 inches in height, and is wearing size 8- moving into 10 clothes! Asher has been home just short of 6 months. He came home right after his 7th birthday weighing 31 lbs and size 3t clothes were too big. Now he's 39 lbs, has grown 3 1/2 inches and is moving out into size 5 pants. It never ceases to amaze me, the changes in my boys. I'm wondering if you've had their AAI screening yet? We didn't know that Axel had any issues...until we got home and did the routine X-ray so he could have anesthesia to get his dental work done. Not only did he have AAI, but he was in serious condition. A year ago in May, at 6 months home, he had cervical spinal fusion and was in a halo until the middle of August. Asher came home needing hernias repaired as well as some urological work, T&A and a few other things. He had 11 procedures done at once. He did great with it and within a week you never would have known! (well, except for the CAST on his penis!)