Kindergarten Here We Come

Well, here, south of Atlanta school started on Monday.  Thomas was so excited to be riding the school bus like his two older brothers.  I am not sure he realized that the long day of Kindergarten was going to be in between his bus rides, but he has been happy nonetheless.

We will have our 504 plan meeting in three weeks.  This time is given to allow me to get letters from his doctors on what his limitations in a school setting should be and allow the teachers time to observe for themselves.  I have confidence that this will be what is best for Thomas and that all parties involved are genuinely concerned to make school a safe place for our boy.

We love our elementary school!!  It definitely has its benefits to have two older brothers who have been there.  I have grown to know and love the teachers and administration.  I think this will make for an easy transition for Thomas and the school.  He has a fantastic teacher this year and I just know it is going to be wonderful!



I did not  update much this summer as it was busy and fun!! Besides spending lots of time with mommy and brothers.  Thomas did go to Art Camp and had a blast!! He can't wait to do it again next year!






We also had our annual summer trip to Florida.  Thomas did fantastic in the pool this year with swim lessons and even was able to swim with his head under the water.  He didn't quite want to reach his arms out like he should, but I think in time we can get those muscles to loosen and do better.  He was religious about using his ear plugs and we had NO ear issues this whole summer!! What?!?!  I know, thank you God for your healing and blessings upon his ears.




Tomorrow is Klippel Feil Awareness Day!!  Hopefully we can continue to spread the word and through Thomas' story and many others, we can bring more awareness and educate more people as to what it is and how it effects all who have it.  I never mind anyone asking me questions about Thomas or what anomalies he has.  God has sent him here for an amazing purpose with an incredible journey in mind.  We will always do our best for him and for others like him!!

Nuerosurgeon Update ~ July 2015

Summer has been so much fun this year with my boys that these appointments sneak up on me.  Thomas has been having fun playing with his brothers, outside, in the pool, art camp.  Hard to believe in a couple of weeks we will be back at school and Thomas will be in Kindergarten.

Today was our check up with Thomas' Neurosurgeon.  I would say overall it was a normal, great check up.  I do enjoy going to that office they are efficient with your time but so friendly and helpful.  It is just the right combination.  The neurosurgeon is only concerned with Thomas' neck and the Klippel Feil.  We have done x-rays for the last four years keeping and eye on it all.  Today was no different.  Thomas had his flexion x-rays done of his neck and she allowed him to stand and do it which make him a very happy camper.  He prefers to stand than to lay down on that hard table in awkward positions and I don't blame him.  I am so proud that he is old enough to communicate such things and share with the people we work with.

The only thing we discussed was Thomas has had a couple of episodes of pain that spread across the top of his shoulders in his back and down his spine.  The neurosurgeon said that could easily be explained as a muscle spasms and that while unpleasant they are normal for someone with Klippel Feil Syndrome.  He shared some tips and ideas with me on working Thomas' neck muscles to help massage them, etc. to prevent the spasms.  Of course, Tylenol or Motrin can always be administered as well.  If they become more frequent, I should keep a log and can reach them anytime.  If they continue to worsen we can go back to PT to specifically work on neck muscles.  He said Klippel Feil patients naturally have tight muscles, but Thomas' are not as bad as they could be. 



My sweet boy did a great job and I was very proud of him.  Glad to have another appointment done and moving on to enjoy what little bit is left of our summer.  In the midst of all that could be wrong, everything is Good!

Phil 4:4 Rejoice in the Lord always!! Again, I say Rejoice!!

Update - Hearing May 2015

Thomas completed his 5th surgery on his ears in December.  We had a out post op follow up in January and things looked good, which isn't surprising.  Typical Thomas though begins to reject tubes within the first six months and we have pain, lots of gooey drainage, hearing loss, etc.  His surgery was on Dec 11, 2014 with a hearing loss of:

Sept 2014                                   Dec 2014

The goal to be in normal hearing range is in the grey shaded area.  As you can see, he showed some substantial hearing loss in September and then had a rapid decline to December.  He has always had some level of hearing loss even with the tubes, but it was never as bad as it was in December.  We immediately did surgery to replace the tubes that were not working.

January 2015, we had our post op follow up and things looked good.  Here is the hearing results:

January 2015

So, as you can see, we are pretty much in the grey shaded area at all levels but one.  At the time the audiologists explained to me that this is the best it would get for him based on his history.  She explained that the tube sitting in the canal will prevent his ear from correctly processing that lowest tone.  We were happy and just prayed that his tubes would continue to work and his body would be more accepting of these tubes.  The ENT tried a different kind in hopes that this would be the case.

We are set to follow up every six months unless he begins experiencing pain or showing signs of hearing loss again.  We had a follow up appointment yesterday and it was amazing!!  Here is the results of his hearing test yesterday.

May 27, 2015

Do you see what I see?  Yes, he is in all the grey shaded area!!  For the first time in his life, his hearing is awesome!!  I might also mention that he went swimming in a pool and the beach this past weekend and accidentally got water in his ears and there were no tears.  We have been struggling with his ears since the day he was born and last year was definitely one of the worst years we have had with them.  Today, I feel very optimistic that his ears may not be a major concern for a while (maybe a long while). 

Thank you to each and every one of you for all of your prayers and support.  Prayers work! God works!!  God has an amazing plan for Thomas and I can't wait to see it all unfold. 

He also had his annual with our pediatrician the end of last month and all checked out from her perspective.  He currently weighs 34 lbs and is 40.25 inches tall and is progressing well, BMI is still under the average and is good.  We did discuss possibly getting him back into PT due to tightness in his neck and the unevenness of his shoulders. 

Next week, we have his annual appointment with the pediatric ophthalmologists.  He has Duane syndrome, which to a 5 year old, means I can do cool things you can't with my eyes.  We are praying his vision is still good and that he is continuing to compensate well. 

Up on the lists for follow ups, Neurosurgeon, Orthopedics (possibly Shriner Hospital) and Endocrinologists.     

In August, he will begin Kindergarten at the BIG school and he is so excited.  I am excited and nervous as well.  I know he will do well and I have confidence that the school will do all they can to protect as well as educate Thomas to the best of their ability.  It definitely helps that he is the 3rd from my point of view because I have been at their school now for five years and I have come to know and love so many of the teachers and staff.

But Jesus called them to him, saying, “Let the children come to me, and do not hinder them, for to such belongs the kingdom of God. Luke 18:16

No longer alone

My sweet boy was born April 29th, 2010 and I wrote my first blog on here in October 2011.  Months of distress, confusion and doctors led up to that first blog.  Months of tears holding my infant child not knowing how different he was on the inside and what answers we would find as I pushed.  We continued asking questions, researching and doing tests.  It was expensive and exhausting, but I feel confident now that we at least know what his bone structure looks like and have a baseline to compare as he grows and his body begins to change.

We are now on the cusp of Thomas' 5th Birthday.  Wow! Five wonderful years with this ball of energy!  He might have been early, he might have been slightly delayed but as with anything where Thomas is concerned delay means nothing.  It means, I'll catch up and surpass.  Watch me!  He is now an extremely active, talking nonstop, preschooler who is extremely smart and loves trains and the color blue.

When this blog began, I stated time and time again that I had no idea the direction I was going nor the purpose but that I felt like I was being led to write it.  So I did.  I wrote and wrote.  I went to doctors and then I would come home and write my blog collecting my thoughts and processing along the way.  I felt like it was an easy way to share with family and friends the difficult and complex world of uncovering a rare genetic disorder that my son has.  It seemed easier to collect support and prayers by writing it out and sharing it on media outlets.  There was no group of parents to gain support from, there was no foundation (still isn't), no 5ks and there isn't any medical expense help out there for children like Thomas.  Parents like us are on our own.  Or are we?

Well, since writing this blog there have been Facebook groups formed just for people with Klippel Feil Syndrome, just for Parents of kids with Klippel Feil Syndrome, there is a group for Duane Syndrome and more.  We can talk about tests and compare children's abilities and doctors.  It is through these connections that I was able to get Thomas seen by the amazing doctor in Cincinnati.  I still have moms and grandmas who are just finding my blog through their own research and reading my words for the first time.  I get amazing emails and thank yous from those parents searching for hope.  Through my blog, through Thomas' story, through the sharing of information and real life experiences we have given the gift of hope.  We have made connections for life and will always have each other to help navigate us into the future.

There is another mom sitting down at her computer, holding her baby, looking for answers and my prayer to her is that she will find hope and peace.  There are a lot of scary things and terrible possibilities on the Internet, so I do pray that while I am no doctor, no special foundation but a ray of hope for many.

Thomas is a gift from God that was meant to be shared and not kept hidden.

“For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.” Jeremiah 29:11