Maintenance

Tonight as I am processing the thoughts and events from today and reading other people's hard struggles, the word that comes to mind is maintenance.  We have been on cruise control where our Thomas is concerned and I am thankful for that.  So thankful!!!  Yes, we have had issues to deal with here and there but nothing that we can't keep moving forward with.  Most days I don't carry the burden with me that comes with having a unique child.  Then there are those times when we have to realize that he is different and there are challenges we have to face.  They can be as small as being invited to a Birthday party that he can't go to because it wouldn't be safe or bigger such as being picked on at school for being little.  I find it easier to distract him and make life fun in the midst of the negative, but there are times when I want to sit down with the kids around him and explain his size, explain his limitations and have them love him as he his.  It hurts your heart as a mom.  Lately, I have felt more of a need to build Thomas up against those who could bring him down since I myself can't take on all the other kids.  I knew this day was coming, I know kids are mean, but it is still a touch reality to take in.

Then there is the conversation I had with my oldest son this morning that makes me take time to pause.  He had a permission slip for a scoliosis test at school.  For most, not a big deal, sign it, don't sign it.  But for us, it brought up a whole conversation that I was expecting.  I told him he could have it if he wanted but that our pediatrician always checks him and that Thomas has it.  Then came the questions about Thomas and his spine, etc.  I learned that he had been reading my blog at school and learning about his brother.  That made me take time to pause.  I have always tried to educate our family on Thomas' limitations and why he has them, but had my oldest son gotten old enough that he could really understand more and grasp the actual anatomy of his brother.  He could, he was and he did.  It made him sad and confused.  It was a conversation that needed to be longer than the fifteen minutes I had to drive him to school and the diagram of vertebrae drawn on my sketch pad.

I am thankful for the calm.  Thankful for routine and normalcy.  In a month, Thomas will have his follow up with his Orthopedic surgeon who is becoming more concerned with the condition of Thomas' lower back.  In the past weeks, we have started to have more concern as he complains more about lower back pain his normal daily activities that he never did before.  He started hurting when riding his bike or playing outside doing certain things.  He has stopped trying to do sit ups or other exercises during PE.  We help him with warm baths and oils, massages, but the fact is it is there and it is not normal. 

If you are reading my blog and are on this journey with us, please pray for him to have comfort and healing.  Pray for us to enjoy and be thankful for the time of maintenance that we may grow and learn from these times as much as the hard times.  Pray for understanding and acceptance of our difference among each other and especially among our children.  Thomas is a smart, strong little boy with lots of family and friends to love and support him.  This is a God thing.

       

He caused the storm to be still, So that the waves of the sea were hushed. Then they were glad because they were quiet, So He guided them to their desired haven. Psalm 107:29-30

Update on ears 10/3/16

Thomas and I had the pleasure of meeting with our favorite ENT.  Thomas has been sharing with me some concerns of popping and pressure.  This is typical for Thomas when a tube is not present in his ears.  As you may remember, we removed the right tube about six months ago, April, and instead of immediately replacing with his tubes.  The doctor had hopes that Thomas' ears would have matured and we wouldn't experience the same issues as the first five years of his life.  Unfortunately, the same pattern has begun.  He showed negative pressure at his June appointment.  In August, his right seemed to have stabilized and was looking good.  Then the end of August, the right ear got a severe ear infection that we had to treat with antibiotics.  Looking at Thomas' ear today there was definitely negative pressure in the right ear.  We checked his hearing and his right ear is starting to show signs of hearing loss.  Having said this, the left tube is doing well and is open and clear.  This is huge as it is the longest that a tube has ever stayed in place in Thomas' ears even though the last three sets were 'long term'.

So, what does this mean?  Good question.  Basically, his right ear is showing the same patterns as before and we should expect his hearing loss to continue in that ear as well as the discomfort of negative pressure.  Short term, not a big deal.  Long term, gets to be a very, big deal.  Considering this would be Thomas' 6th surgery and his 5th one on his ears, we have decided to wait.  Wait it out just a little bit longer to try to stretch the time period between surgeries.  To try and reduce the amount of times he will be put under anesthesia in his childhood.    The doctor expressed his concerns on anesthesia on there little bodies and considering Thomas' first surgery was at 4 month old, I am okay with taking those concerns into consideration.

The doctor has given me the authority to call it when I am ready for surgery.  So, if for any reason Thomas' becomes miserable over the next few weeks and months with this ear we will do what is necessary.

Now we will pray and trust.  Pray for his right ear to find a way to stabilize itself with the negative pressure which we are also going to try to help with a nasal allergy spray.  Pray for NO infections.  Pray his left tube continues to be strong and open for allow for good, clear hearing.  As we enter this Fall season, this will be a true test of how his ear will function without the assistance of a tube.  We may be in surgery before Christmas or we might can hold out until sometime next year.  Time will tell.

Thank you to each and everyone of you who love on us, pray for us and always support us. 

"give thanks in all circumstances; for this is God’s will for you in Christ Jesus. "

1 Thessalonians 5:18

Follow up with Duane Syndrome

Good Afternoon All,

I apologize in advance for being a bit slack on updating the blog, but no updates means nothing to worry about.  We had our annual eye appointment with his eye specialists.  Luckily, once again his vision is developing normally and doesn't need any correction at this time.  As for his actual eye movement and placement, they are each complex in their own way.  That was the doctor's words to describe them.  However, if he turns his head to the right five degrees he can straighten both eyes to focus forward.  As long as his eyes continue to compensate in this manner and we don't see any changes we are good to go.  I am so thankful that his eye muscles are strong and working and his brain is smart enough to make them work.  Duane Syndrome is extremely difficult to work with since the nervous system for his eyes developed differently than normal and it would be impossible to determine which nerve operates which function of the eye.  Anything that we would try to do to improve his eye could traumatically ruin any functionality that he has now.  We are also blessed because this syndrome does not seem to affect or bother Thomas at this time.  He uses it to entertain his brothers by making his eye roll around separately than the other. 

Here is the picture I took from our visit.  He is intently watching "101 Dalmatians" while waiting for the doctor.  This is also a picture of the monkey that he is able to use his monkey magic on while at the office.

On a side note, we are headed back to the ENT on Monday.  Thomas has had some issues with his right ear, non tube ear.  Apparently there is a build up of fluid and/or pressure which resulted in a severe ear infection.  We were able to treat with antibiotics from the pediatrician but the ENT called and wants to see the ear for himself.  I will keep you posted on his findings.  We are trying to elongate the time between surgeries for Thomas in his ears as long as we could keep his hearing stable and infections away.  So, prayers for this sweet boys ears are always greatly appreciated.

Jeremiah 29:11 

¹¹ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

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

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

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. ... "

Today's ENT Appointment 4-13-16

So, first off, you know the appointment wasn't typical if it warrants it's own blog.  Needless to say, Thomas has been experiencing pain in his right ear for the last couple of months.  We saw the ENT in February and they noticed some granulated tissue growing around the tube in the ear.  The doctor who saw him just gave us a prescription of more drops to tolerate it.  The tube was still working and hearing was still acceptable.

Today, we went as a follow up on this issue as Thomas has still been experiencing pain.  He is a tough cookie for the most part, but this was quite painful.  They examined his ear and stated the granulated tissue was still there and probably the source of his discomforted.  We didn't test hearing but did do the tympanogram to make sure the tubes were open and working.  They passed.  However, upon returning to the office our ENT came in to take a look and decided we should move to the microscope room.  (Where nothing good happens)  The ENT examined his ear put some lidocaine in his ear and we waited.  At this point, I thought he was going to clean it. 

BUT, he instead decided to remove the tube in office.  Thomas has had this procedure in office before and it was extremely traumatic and painful, although last time he wasn't numbed first.  There was also a lot of additional tissue connected to the back side of that smaller tube.  This tube is rather large and luckily didn't have as much on the backside.  Five sets of tubes and this is the first time we have been given one to take home and share.  I think it's rather gross, but Thomas' thinks it is cool.

At this point, he has a hole left in his ear drum and we will have to wait on it to heal.  Once it has healed then we will begin checking his hearing levels to determine if we need to replace with another tube. 

Thomas is doing fine now, but it was very painful and traumatic for him.  He had a rough morning afterwards and we worked hard on distracting him.  A little treat didn't hurt either.


We will pray for healing at this point and no more pain and discomfort.  It would be wonderful if this was the actual end to our journey with tubes, but I have a feeling this is temporary at this point.


Thank you for everyone who always prays and supports us. 





Hebrews 10:23 "Let us hold fast the confession of our hope without wavering, for he who promised is faithful"

Not sure who is more excited at this point!!

First off I must say, I'm sorry that I haven't updated here much lately.  But the best news is there isn't much to tell.  We are going to start up our round of semi-annual checks with all of Thomas' specialists soon, but we have been on monitor mode and doing well.

Having said that, Thomas will be turning six years old in a month and he is a busy, busy little boy.  Lately, he has shared some of his frustration with me that he is unable to do what other normal kids do.  He so badly wants to jump in a jump castle or jump on a trampoline.  He has asked to join sports like soccer and baseball.  The latest is a guy at the gym told him he should do karate.  Thomas and I had the heart to heart talk about his bones and why the doctors want him to refrain from such activities.  Thus far, Thomas has been okay and moves on to the next thing.  But this time he stopped, looked straight at me and told me he was mad that God gave him these bones.  I was absolutely crushed.  I don't blame God for my sweet Thomas, but I certainly don't want him to blame God either. God made him perfect, just the way he should be and I want him to find his own way of embracing that. 

Thus began my extensive research.  How do I make him feel like he belongs and is capable just like everyone else without putting his health at risk?  What 'can' he do that he wants to do?  I asked in the Klippel Feil support groups and I started talking to other people.  The school has done an excellent job of including him while protecting him.  It was emotional for me in that I don't of Thomas as special needs or disabled, but he does have limitations.  I needed to find something in the in between. 

God answered my prayers when I contacted the owner of a local karate gym.  I have known the owner and his family for years and knew that I could share with him Thomas' limitations and he would give me and honest opinion.  I also knew I could trust them with Thomas and that he would be safe and protected.  I was so relieved after receiving that phone call and being able to share with Thomas that in two weeks he will get to try out karate. 

While I know that he will have many life lessons to be learned through this life and there might not always be an answer that he likes.  But at least for this season of his sweet 6 year old life, he can be just like the other boys and try his hand at karate.  Hi-Yah!!

Photo Credit: Stacie Hart

Matthew 21:22 And whatever you ask in prayer, you will receive, if you have faith.”

 

Quick update on ears

We spent this morning with our favorite ENT.  Well, as with everything with Thomas nothing is cut and dry.  I will take this morning as good news as we do not need another surgery at this time!!! Yay!! She had me scared for a minute.  Apparently, his right ear isn't thrilled that the tube is still there and has created a build up of granulated tissue around the tube.  The build up can get so bad that it will clog his tube and create a loss of hearing.  So, we cleaned it up, performed a hearing test and got more drops to try to keep it under control the best we can. 

Good news, he can hear now and we don't need surgery right now!!!

Sailing into 2016, Counting our Blessings

It has been quite a while since I last updated my blog and felt as though I needed to share with you all the latest on our little man.  First of all, I am happy to report that in this instance no news is good news!! Praise be to God!! 

Our little man is trucking along in Kindergarten, doing all the things that Kindergarteners do.  I love our elementary school and all of the teachers and administration.  They have surrounded Thomas with lots of love and support.  He has some limitations set by his 504plan, but Thomas doesn't even notice at this point and that is a good thing. 

Thomas also has started to take piano lessons, after he negotiated with our piano teacher.  He so wanted to do like his brothers and in so many instances I have to say, 'no'.  However, this was one of those times where I could say, 'yes'.  He is so excited and has practiced all week.  It is so silly how us mommies forget things when we aren't in the thick of it but after we signed him up I realized this is good for his fine motor skills and couldn't strengthen his hands.  Take that low tone!!  By the way, his handwriting is coming along nicely and looks better than his older brothers.  Shhhh!

Most of Thomas' appointments are on a yearly check up rotation at this point.  For the first time since he was born, I know where we are with all of his anomalies and we are stable.  We will go back for a hearing check in the coming months to make sure those tubes are still in place and working properly, other than that we will see all of his specialists as the time arrives. 

We are so grateful and blessed to have our energetic, happy Thomas and can enjoy just living life at this moment.  These moments may be rare and we will not take misuse them. 

Continued prayers for his stability and ease of pain.  We praise our Lord for all he has done in Thomas' life and continues to do daily.  Anyone who has the pleasure of meeting Thomas knows that God's light is shining around him and through him.  We always thank God for all of the people he surrounds us with who lift us up in our time of need and don't forget us when we are silent.  Our hope is that we can pray for you and lift you up at all times.

Until next time. . . . God Bless.

God will shake up your world! This shaking is to remove things that are not part of His plan and leave the things that are part of His plan for your life! Hebrews 12: 26–29

Turkey Tacos - Thanksgiving 2015

Christmas 2015- Thomas(5) with his brothers, Tyler(11) and Tanner (8)

and their Baby Sister, Chelsea (2)