Wednesday, June 22, 2016

ENT Follow Up, no surgery yet

Today we had our follow up with the ENT for Thomas.  Our last visit was in mid April when he removed the right ear tube.  That has been a blessing as it was causing Thomas quite a bit of pain as the ear was rejecting it. 

To follow up the left tube is still in place and looking good with no signs of rejection.  This is a huge blessing as that tube has been in place for 18 months without issue.  Praise Jesus!!  As for the right ear that has been two months without a tube, we are seeing the normal pattern for Thomas' ear.  There is a build up of pressure behind the ear drum causing it to be pulled inward.  This is causing some mild hearing loss at this time.  Most children who need tubes are much younger and the cause is a build up of fluid.  Unfortunately with Thomas, there is some fluid but the issue has mainly been the pressure.  We aren't sure on why his ears cannot stabilize the pressure but the solution does change based on cause.

The doctor is suggesting we wait it out a bit longer.  The new game plan is to try and stretch the amount of time between surgeries as much as we can.  Since the left ear is working and can compensate for now, we are going to keep on this path.  We will follow up in three months and see where his hearing is at that point.  Hopefully it will stay within in the mild range and the left ear will continue to stay stable.  If history repeats itself, the right ear will continue to loose hearing.  So, for now, we will continue to enjoy our summer.

Thomas has been able to swim in the water with confidence this summer with his ears, which hasn't always been the case.  We are using a plug for his left ear as too much water does cause him great pain. 

"Be thankful in all circumstances, for this is God's will for you who belong to ... In all things give thanks; for this is the will of God in Christ Jesus concerning you all. ... I will bless the LORD at all times; His praise shall continually be in my mouth." 1 Thes 5:18


Thursday, June 16, 2016

Annual Neurosurgeon Appointment 6~16~16

Well, the only reason why I am writing this blog is to have a record of it.  Today Thomas met with our Neurosurgeon and it was quite uneventful.  Yay!!!  He hasn't changed and everything is still the same.  Thomas seems to be winning against the Klippel-Feil Syndrome at the moment.  All of his cervical spine is fused together with movement only between c3 and c4.  That area seems to be holding its own and allowing Thomas to do all that he wants to and is not causing any pain or discomfort besides the regular muscle tightness.  The doctor wants to see us back in two years! What? I know, right?!?  Two years!!  Praise God!

We truly love the doctor even though we don't like the fact that we have to go.  They gave awesome toys for Thomas and his brother today since he did so good with his neck x-rays.  Sorry, no cool pictures to show you of the x-rays, but these guys are part of my whole world!!

And my God will meet all your needs according to the riches of his glory in Christ Jesus. Phil 4:19

Thursday, June 2, 2016

Orthopedic update - Spine Summer 2016

Welcome to Summer!!  Thomas has several check ups that are coming up during the summer months. It is nice to have the day to go to the appointments without him missing school but it also means that we ALL get to go.  It seemed to work out fine though, in fact, I think it was extremely beneficial for the brothers to be a part of Thomas' experiences so that they have a better understanding.

After years of x-rays, he has this down pat now.  He still gets a bit nervous and jumpy, but today with his brothers in attendance.  He stood tall for his x-rays and was a champ!!  He knows the drill and is so happy to stand for them and not have to lay down, he hates that!!!!  Here he is being super serious for his test today.

Today was Thomas' check up for his spine.  We changed doctors last year and couldn't be happier.  The office and the doctor are just wonderful with their bedside manner and competence.

First off, the best news is that Thomas has had some growth in the last year and his bones have stayed stable.  He still has great flexibility and is able to move without pain or discomfort.  The doctor again stated that Thomas is to do no contact sports that just being a 'boy' will be enough for his bone structure.  Here was our topics of discussion:


This x-ray is looking straight on at Thomas.  The top portion is some hemi vertebrae.  It may be hard to see here, but it is where the bone is made up of two triangles balanced on top of each other instead of a solid rectangle.


The lower portion gets a little more complicated.  There are more hemi vertebrae like above with kyphosis. 

The good news here is despite the anomalies in his spine, his head lines up over his pelvis.  This is wonderful!!  He has curves in his spine, also known as scoliosis, but in the end his body is balancing itself out and is working for him.






Here is the second topic for today.  If you look at his x-ray from the side view, you can see the area marked with the arrow.  His spine sway far inward where the majority of the anamolies are located.  This is the biggest area of concern.  However, at this time the doctor doesn't feel we should do anything.  He is more on the conservative side of things, which as a mother I appreciate.  He stated that some surgeons would jump right in and correct this area.  But looking at Thomas as a whole, he sees no reason to do surgery at this time.  We will definitely keep a close eye on this area and monitor it and make those decisions as they become necessary.


Today, we are thankful that things are still stable and there hasn't been any unexpected changes or surprises.  We go back in 6 months for another round of x-rays.

Thank you for always supporting sweet Thomas in your thoughts and prayers.  We appreciate you!!





James 1:1-27   "James, a servant of God and of the Lord Jesus Christ, To the twelve tribes in the Dispersion: Greetings. Count it all joy, my brothers, 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. If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. ... "