Surgery #5 Done ~ Ears

Today Thomas completed surgery #5.

He has now had four surgeries on his ears beginning when he was only four months old.  Thomas was very aware of what was happening today and why he had to do it.  Last night before bed our pastor called to let us know we were in his prayers.  I was laying down with Thomas to help him go to sleep and he began to cry asking why everyone was praying for him.  He is so tenderhearted and loves to pray, so he understood on his level how much everyone cares and loves him.

This morning relatively calm.  He was quite upset he couldn't have his morning coffee but he understood that it was the rules.  We had the same nurse as last time and even saw one of our physical therapists.  The hospital went very smoothly and we kept his blanket nearby at all times and both mom and dad were with him until we couldn't be.  There is something that melts your heart when I child has a lovey that brings them comfort and love like nothing else.

Surgery was earlier than planned, which was fine with us.  He went back about 10:45 am instead of 11:15am.  This time they did not have to give him an IV or incubate him, they simply gassed him and then woke him up when he was done.  I was SO relieved.  The doctor came in before and after to talk to us.  He ended up cleaning and replacing the tubes in both ears.  The left one was completed block and covered in granulated tissue, blood, etc.  The right one also had a build up of tissue.  He ended up going with a newer tube that is softer than the previous set but is also considered a long term tube.  It looked similar to this, but keep in mind this is under a microscope and looks much larger than its actual size.  They are really very tiny.

 He assured us that we are doing the best that we can do, but that there are no guarantees.  We could quite possibly be back next year doing this again.

He explained that with Thomas' Eustachian tube dysfunction the only solution they have at this time is tubes.  He also explained that his hearing will not be restored immediately, but should increase more each day as the fluid drains from his ears and the additional drops and the swelling goes down.

Thomas was quite weepy after he came back but as the anesthesia wore off he quickly became himself again.  He has only complained about pain a little bit here and there but overall he is doing great.  I am thankful for all of the prayers and support for our little man and am so very thankful that this is past us for now.


Tonight, I share two Bible verses with you that brought me peace as we now wait on God to heal Thomas and restore his healing.


Jeremiah 30:17 "For I will restore health unto you, and I will heal you of your wounds, saith the Lord."


Isaiah 40:31 "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary, and they shall walk and not faint."

On behalf of Thomas and our entire family, we thank you more than you know for all of your prayers and support.  God loves you and will cast his blessings upon you.

Surgery Next Week ~ Ears

Thomas had his follow up appointment today with the ENT.  Thomas told me this morning he was glad that we were going because his left ear doesn't work.  I wasn't sure what to expect, but we were patient and worked with the doctor.  Upon examination, they determined that Thomas left ear tube is not working anymore and the ear is having a hard time dealing with the foreign object.  We even had to go into the microscope room which caused immediate anxiety for our little man.  After we were able to spend some time alone in the room, I was able to remind him of our trip to Cincinnati and how the microscope didn't hurt and was a way for them to help them fix his ear.  His fears were then calmed and he hopped right up on the table for our Dr. to examine it more closely.

The determining factor for surgery was if his hearing was being effected.  He said if the difference was only 5 decibels no big deal, but if it were more then surgery was inevitable.  The results from audiology were quite telling.  Since we last saw him the end of September, the ear has declined and is effecting his hearing loss more.  Here is a side by side comparison of his hearing from September 27th to today, December 3rd.  There is a difference of about 30 decibels.

September 27, 2014                                  December 3, 2014

So, the doctor said that he definitely needs surgery to remove the tube from the left ear.  However, the doctor is not sure of his actions after that.  He said he is going to wait until he is under anesthesia and can review the ear in more detail before making the final decision on what he should do next.  He is also going to take that opportunity to review the right ear as well.

Thomas had his first set of tubes at 5 months old not due to chronic ear infections or fluid, but due to hearing loss.  Each year when the tubes fail subsequently so does his hearing.  He is currently on his third set of tubes that were placed in his ears last December '13.  His left ear began rejecting the tube in June '14. Thomas was even seen by a specialists at Cincinnati Children's Hospital who agreed we were doing all we could and that unfortunately there weren't many other options.  Thomas will need some time of tube working in his ears in order to have proper hearing.

Surgery is set for Thursday, December 11th at Scottish Rite Hospital.  We would appreciate all of your prayers and support during this time.

Thomas is aware that he is going to go to the hospital to go to sleep to get his ear fixed.  He is SO excited that his ear will be working before Christmas!!


It is unusual to read from the book of Micah, but this verse I found to be very comforting and fitting.

"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me." Micah 7:7

Our trip to Cincinnati

I am quite tired from the last couple of days, so please bare with me and give me some extra grace.  I wanted to start writing though to let you all know about the medical side of the trip and what we

learned.  The hospital was top notch and took very good care of both us throughout the whole trip from the pre-planning process to getting us to the airport today.  The doctor was phenomenal.  From all of the wonderful specialists and doctors Thomas has seen since birth, I can honestly say we have never had such an experience as this.

The short story:  The doctor agreed that we have done everything he would have done with one exception that we discussed in detail.  We were able to go over the history and management of his ears.  He suggested further test at a later date and changing the long term plan in hopes that in the future this will no longer be an issue for Thomas.

The long story:  The doctor had no clinicals that day and had only come to the hospital to see Thomas.  He was honestly excited and intrigued as to what he would see and learn from him.  Thomas was initially very anxious because the room we were placed in had this in it:

This is the infamous microscope that ENT's use.  At our regular ENT this is a separate room and he has been condition that only bad things, that hurt, happen in this room.  However, we quickly learned from our Dr. that this wasn't just a microscope but a video camera.  He first examined Thomas' bunny with it, showing him how it looked in his ear and showed it up on the two big television screens in the room.  After bunny was done it was Thomas's turn and he happily jumped up on the table for him.

I am telling you this doctor was patient and amazing!!

Thomas's appointment went very well.  It was the first time I was really able to see what his ears looked like on the inside.  He has large blue, U tubes in his ears and you can see them in his ear drums.  He also has scarring on both ear drums but the doctor assured me that it was normal from the previous surgeries and not bad considering he has his third set up tubes.  He did note that the left ear had some granulated tissue that comes from behind the ear drum up and over and has attached the ear drum.  He said this may be effecting his hearing as well as the position of this tube.  He stated that the U-tube is much larger than a standard short term tube and that in Thomas's little ears it would be difficult to get them in a good position and keep them that way.  While he understood our ENTs reasoning for using these tubes in an effort to have less surgery and keep them in for three years, he said he probably would not have gone that route himself.  Just because Thomas is small and being with the complex syndromes he is not going to grow at the same rate as a normal child.  Therefore, the smaller tubes while short lasting would be less bothersome to Thomas and would be small and comfortable in his ears.  

He flipped through the medical records and information I brought him and we discussed the history

in detail on his ears and my concerns.  He agreed with all of my concerns and reassured me that I have indeed done my best with his care and he would not have changed the route I had chosen.  He then told me that it crossed him mind to do a cat scan to check the formation of his ears as there is a greater chance that something internal did not form properly when he was created causing these issues.  Especially given the amount of things in Thomas that did not form properly including the nerves in his eyes and especially his bone structure.  Having said that though, he didn't feel it was necessary to put him through that today as he would have to be sedated.  He did suggest that in the future when he needs another surgery or test done to push for a scan.  He also said that the main reason he kept discounting it is that the scan wouldn't change his management plan at this time.  He also said Thomas would benefit from getting that ear cleaned, but there again that is quite evasive and would require him to be sedated.  The doctor was impressed with Thomas's speaking and articulation of words and stated that he has compensated well.  He even asked if I have had his IQ tested?

It was most reassuring when we discussed syndromes and he made it feel like he had heard the terms as often as you have heard about the flu.  (Duane syndrome, Klippel-Feil, Wildervanck, and Townes-Brock)  He did agree with me to disagree with the genetics findings of Townes-Brock as he may look like it genetically he does not look like a typical person with Townes-Brock.  It was amazing to be at such ease with someone who wasn't questioning what he had but discussing the effects of it and how Thomas is compensating.

Where to go from here?  Dr. Choo suggest that I keep track of the drainage, infections and just overall discomfort that Thomas experiences.  He really didn't want to do more than necessary and let Thomas's ear do what it is naturally designed to do.  That may mean that his hearing is not perfect, but he can compensate.  The hope is, as in all children, that his immune system will mature and he will grow taller allowing the ear canal to descend and thus growing out of these issues.  There is always that chance that there is an inner problem we aren't aware of but for the time being this method is working nonetheless.  The bad news, we may just have to get new tubes every year until those things happen.  I was prepared for that information though and feel more confident that if that is the necessary plan that we must follow, we will.

I cannot say enough to each and every person who has prayed, supported us, and has just been there for us either in person, through facebook, the blog, text messages, etc.  Our pastor prayed over Thomas and I before we left on Tuesday and while I was quite anxious just traveling with a four year old it was all for not.  Everything went as smoothly as it possibly could and then some.  Again, every person in our path was absolutely amazing.  God has a perfect and beautiful plan for Thomas and he wanted this trip to happen for us and it did.  We may be back to Cincinnati in the future, but for right now I am so happy to be home with my boys.

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9

Preparing for Cincinnati

The Lord says to be ready and prepared at all times.  I'm not sure this is what he was talking about but I am doing my best.  Its truly amazing looking back through this blog and all that we have been through and where we are now.  The humbling reality is that not much has changed since I started the blog where Thomas is concerned.  We have mustered through several surgeries and lots and lots of appointments, but there is no change.

Overall, I want to celebrate and enjoy this moment of realization.  While his bones did not form properly and will never be correct, he has not had to have any major corrective surgery, braces or therapy.  For all intents and purposes he is stable in his back and neck, his vision appears to be good despite having Duane Syndrome, he is growing although very slowly and he is smart, energetic and happy.

So, I am focusing on the ears and really putting a lot of faith into our trip to Cincinnati.  I am doing all that I can on my end to make this appointment extremely productive.  I will be taking all of his medical records from his current ENT as well as copies from his other doctors in case he needs to reference the MRI results or X-rays for his neck and back.  I am completing a one page (maybe two page) list of all of his current doctors with diagnosis and last appointment information. On my list of doctors I have the following: Pediatrician, ENT, Ophthalmologists, Orthopedic surgeon, Urologists, Neurologists, Neurosurgeon, Cardiologists, Endocrinologists and the lists of his therapists.  I think that's everyone.

James 1:2-4   “Dear brothers and sisters,when troubles come your way, consider it an opportunity for great joy.  For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing."

Thomas is aware now that we are taking a plane to see a doctor about his ears.  He is excited about the plane part!  I'm nervous.  I am worried about him experiencing ear pain during the take off and landing of the flight.  I spoke with the nurse yesterday and while normally a person with tubes has a better experience and less chance of pain, she could not confirm or deny that he would feel pain the left ear since its not working properly.  Our preparation to help him is that we are giving him Zyrtec every night before bed in an attempt to lessen any fluids or pressure that may be caused due to sinuses, etc.  It will also shrink any of the mucus membranes for the best opportunity for his ears to stabilize.  We will also use the nasal decongestant.  Along with the regular plan of allowing him to chew gum and drink to help.  Please pray that once on the plane he will not experience any pain in his ears.

We have been in constant contact with the hospital and they are absolutely wonderful.  They helped us arrange our hotel room and will provide us with transportation while in Cincinnati.  I have also had friends offer us dinner and fun while in town.  Last detail that we will firm up is our flight plan.

My prayers are for safe and uneventful travels next week, my family will be taken care of, for a caring and attentive doctor who understands Thomas' hearing issues with his ears and can offer a solution that we can implement.

Thank you for being there for us during this journey, the ups and the downs.  God has blessed us with an amazing little boy and this is just a small part of who is destined to become.  He is already God's Masterpiece!

6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Phil 4:6-7

Update on Ears ~ Sept 2014

When I last wrote, I explained that Thomas' left ear was rejecting the tube and causing quite some drainage, pain and discomfort.  The tube only lasted 6 months before it started doing this and these were the special U-tubes that were suppose to be able to last up to three years and do not come out on their own.  (Side note, Thomas has never been able to expel a tube on his own without having surgery to remove it)

We saw our ENT and he recommended using the drops in an effort to create a happy environment in hopes the eardrum would keep the tube.  I explained that the normal, Ciprodex drops, cause quite a bit of pain to Thomas and wouldn't work.  He offered us an alternative prescription for Neomyc-Polym-Dexameth drops.  Thomas was able to tolerate these for only a couple of days and then they were causing great pain and discomfort to him where it took him over 45 minutes for him to recover.  It was awful to see.  I called the ENT and they advised for us to immediately stop the drops and hold tight until our follow up appointment on the 24th.  In our discussion, it truly sounds like our only option is surgery to replace the U-tube with another U-tube.

In sharing my story with others, I was lucky to have a fellow special needs mom reach out to me.  Her first words to me were, "If he were my son."  followed by a suggested doctor that we should go see if we were interested in getting another opinion from someone who may have the experience to give us some alternative options.  I took her advice and reached out to the doctor.  It took me a couple of days to compose my email and even went through some of my own revelations in composing it.  I sent the email this morning and I had a reply within the hour!!!  I couldn't believe it.  Then we were emailing back and forth.  What?!?!  Amazing!!  He agreed that it sounded like with his Eustachian tube dysfunction that tubes would probably go through several set of tubes before he would be done.  He also said what I have been saying, which is with everything he has against him he needs as much as possible on his side.  Yippee!! 

While it sounds like repeated tubes probably are a large part of his life at the moment.  He suggested that if I would like a high quality second opinion, I should see Dan Choo.  Dan is the Chief of our Division, and is also one of the most experienced and respected pediatric otolgists in the country.  I was more than happy to take the referral and we got the ball rolling and should hear something later this week.  If indeed, he agrees that repeated tubes are the only option for Thomas at this time then I will settle this matter and accept it.  But if there is a slim chance that we can save his eardrums from this trauma, repeated surgeries and rounds of drops, drainage and pain then I will try.  Peace of mind will be worth the trip to Cincinnati.

I, of course, did my research on Dr. Choo and am thoroughly impressed.  Not only is his interest in the inner ear but he also specializes in head and neck surgery, which means he may be familiar with KFS and how it could effect the ear structure ect.  Here are his special interest: 

Clinical Interests

Diagnosis and management of children with hearing loss; pediatric cochlear implantation; surgery for congenital ear abnormalities; hearing restoration surgery; disorders of the endolymphatic system of the inner ear (e.g., Meniere's Disease).

While most say that his other issues are not related to his ears, my mama gut tells me otherwise.  His eyes were effected, his muscle tone is effected, his bones are abnormal from top to bottom of his spine and you his ears are just a coincidence.  

Thank you for all of the love, prayers and support!!  It is amazing to have so many people cheering on our team!!

Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain. 1 Cor 15:58

Them ears, them ears!!

So, we've been trucking along for a while with mild issues.  Yay!!  Just a little back history, the first thing that we ever knew was wrong with Thomas was with his ears.  He failed his newborn screening which at the time seemed like a normal occurrence and that it was fluid that would drain.  Well, that was not the case, he failed every hearing test thereafter.  At the age of 5 months old he had his first surgery to insert tubes into his ears.  Amazingly this was what he needed to give my baby his hearing.  It could not be determined if it was do to pressure or fluid, but his ears were not able to release either from behind his ear drum clogging his hearing.  Due to his hearing loss, he was mildly delayed. 

About a year later his tubes were being pushed out of his ear drums and his hearing began to fail again.  We underwent surgery again where they removed them both and replaced them with new tubes.  Once again, his hearing was restored and with speech therapy we quickly overcame.  His second set of tubes worked for a while and then again we had one ear that began pushing the tube out but had tissue still connecting it.  The ENT thought it was sitting in the canal and took it out in the office, which he now regrets.  The tube was indeed attached to additional tissue in the ear and caused great pain to Thomas and quite a bit of blood.  The ENT will never forget this day and I won't either, however, Thomas doesn't seem to hold a grudge surprisingly.  Unlike other kids, his tubes don't fall out on their own and his tubes are not due to ear infections.  Our ENT is full aware of Thomas' condition and even confirmed to me today that even though we are able to temporarily fix his hearing today with this method that he may still loose his hearing due to sensorineural hearing loss.  I appreciated his honesty and was glad that he was aware that this may happen but that we will cross that bridge if and when we get there.  Right now we need to focus on his ears at this time.

Here is what we had the other day with Thomas' ear.

He was complaining the night before about his ear hurting and I gave him some pain meds to help.  The next morning when he woke up, this is what we had.  Luckily, I was able to take this picture with me today to the ENT and he was able to see.  This is not the first time I have seen this with Thomas but I honestly wasn't sure if this is what his ears are suppose to do or not. 

The ENT examined his ear today and saw granulated tissue around the U tube that was placed in his ear December 2013.  He said this can happen but usually not this early as the tubes haven't made it a year yet and I know for a fact his ear looked like this in early June.  He explained that the ear drum is rejecting the tube, it is the body's way of extracting a foreign object.  His ear has blood and wax all up in it as part of the reaction.  The easiest, most invasive way to fix this at this point is to add medication in hopes the ear drum will change its mind in a more condusive environment.  He asked if I had tried the drops and I explained that the Ciprodex drops that they always give me set the child on fire.  He asked if he could try and I said sure.  So, the ENT got the drops and put it in his sweet ear.  He was able to see first hand that those drops are very painful to Thomas and his ears are super, sensitive.  The doctor ended up calling me in a different set of drops to try that have a better buffer than these.  We are going to try the drops and pray that his ear drum will change its mind on the tube.  We will go back for a follow up in three weeks.

The other option, if the drops do not work, is for Thomas to go under again and have this tube removed and replaced with another one.  While I would prefer not to go through this again, we will do what we have too to make sure he has the best quality of life.  I have always felt that with all he has going against him that at least the ears is something that can be corrected.

Pray the drops will heal the ear drum and restore his ear to a good, healthy environment that will work with the tube.  Pray the new drops are not painful to Thomas so that we can continue this method without the stress and pain associated with it.  Thank you so much, for all of the love and support always.

The righteous cry out, and the LORD hears them; he delivers them from all their troubles.  Psalms 34:17

Spine Care Clinic Appointment ~ Neurosurgeon

Shame on me for putting so much work into this blog and then not updating it since January.  Here is the good and the bad on that.  The good is that there is nothing to tell medially with Thomas and we haven't had any changes in his condition, we are living and enjoying our lives together!! The bad is for all of you who have taken a deep interest in our Thomas you haven't had the pleasure of enjoying this time with us.  Its amazing to see all of the transformations that have happened on this journey with Thomas.  I realized in our appointment yesterday that the anxiety is much less than it use to be, Thomas is very calm, vocal and is very in charge of his appointment.

So, yesterday we went to see our Neurosurgeon to check up on Thomas' neck to see if there are any changes in the movement between the fused bones.  This was a concern that was brought up last year and was his main concern.  At the beginning of each appointment you have to go through triage.  Now this is a time with Thomas truly shines, which use to NOT be the case.  He sat in the chair to be weighed all by himself, which is a first time that the nurse technician didn't get to see how much mommy weighed first to do the math to figure out Thomas's weight.  He also stood up tall for them to get his height.  WooHoo!!  His weight and height haven't changed much, we know he is going to be short in stature.  We will know more when we do our follow up with the Endocrinologists.  He also informs them that he will not have his blood pressure taken by the machine but manually only.  So not only did get it taken manually but he was allowed to pump it himself.  He has great blood pressure at 100/68. :)

Thomas also talked non-stop, no surprise there.  He was telling them how strong he was and that he can even pick up his bike at home.  The nurse tech loved it and kept talking to him about being so strong.  When we were put into our room this was written on our door. 

"Strongest kid ever!"

Every nurse, tech and doctor who came in to visit us referenced his strength!  It was hilarious, I just can't make this stuff up.  It was one of the most entertaining visits I have ever had with any of his specialists.  He would even pick up the chair in the room to demonstrate his strength.

The worst part of the visit was the x-rays.  Thomas prefers to stand during the x-rays, which could work if he were taller.  The machine cannot go low enough to get the pictures they need.  So, instead he had to sit on top of a box to get the pictures.  These are flexion and extension x-rays so they have to get different shots of his neck to show movement of the bones.  He is uncomfortable but tolerates it okay.  Sitting up straight on normal is work but the easiest.  Then she had him hold his head up as high as he could and his shoulders go up and the tears began to flow.  It is an uncomfortable and awkward position for him.  Then he has to look down and as far as he can and again he tolerated but not comfortable and his shoulders were up again.  The tech was concerned about pulling his shoulders down and I quickly corrected her and told her that was natural for him to have the doctor review the x-rays before doing anymore.  I am all for doing the x-rays for my son but not more than necessary.  I am grateful that I know my son's body enough to be his advocate in such situations.

The doctor reviewed the x-rays and we are still stable.  The bones haven't changed since our last visit which is wonderful.  There is no reason to be concerned with anything at this time where his neck is concerned.  I am so thankful that c3 and c4 are still behaving.  Most people cannot tell that Thomas has anything wrong with his neck and that is such a blessing.  We don't go back for another 12 months unless he starts to experience pain or any other additional issues with his neck.

Thank you again for all of your prayers, support and always being here for us.  It means so much to have you on this journey with us.

Luke 2:40 "And the child grew and became strong; he was filled with wisdom,

 and the grace of God was on him."

Endocrinologists Update

Seriously, just trying to spell that word at times just baffles me.  Where I am now compared to where I was over a year ago is just mind boggling.  The terminology that I have learned the specialists I have seen and all the ways my mind and my heart have grown.  I cannot express to you enough how much that little boy has changed my life and all for the better.  He is a bright light in this world and it will not be covered up or dimmed at all.

So, Endocrinologist today.  Well, let's back up.  It was suppose to be Thursday but I didn't have my bearings correct and we didn't get there in time.  It took me about forty minutes from the time I parked my car until the time we checked in at the 'correct' doctor's office.  Granted we had only been to this particular doctor one other time and we do not frequent this area as much as we do the other hospital at Scottish Rite.  I will say as emotional as that day was, it was good for me.  It was good for me in many personal ways that need not to be explained here, but we also were lucky that if we were willing to change doctors we could come today instead of April.  Yes, the next opening with our previous doctor was April. 

Today, we were blessed with a great doctor.  She read our file before we came in. AMAZING!!  She understood our concerns and asked it there was anything in particular that she needed to address.  Once we went over his stats, I was ecstatic!! I he had grown 8 cm since our last visit 9 months ago!!  For his age that is above average which means he did what he was suppose too AND is catching up a bit.  Thank you Lord!! He is still little of course, he is almost four years old and we have finally moved into 2T clothes.  He also only weighs 30 lbs on a good week.  But his BMI is good and he is growing.  Her suggestion at this time is to do nothing.  WooHOO!!  I like nothing.  She did say based on his syndromes and the unknown impact that they may have on him she does recommend him coming in every six months just to be monitored.  (sounds like all of his other specialists)  Her reasoning is if for any reason his growth begins to stall or flat line again we will catch it before it becomes too severe that nothing can be done.  Not promising that something can be done regardless, but at least we would have the best opportunity.   I really felt good with all of this and so we were done.  We go back in six months and will do another bone age test just to make sure that he is still on target.

We left the doctor's office and went straight to the hospital cafe to get my little man some chocolate chip cookies.  As they were well deserved today!!  On a side note, if you are a nurse reading this, please have a manual blood pressure cuff always available for your patients.  Thomas has come to know the standard pre-exam check in and the blood pressure machine gives him the most anxiety.  That it will just hug your arm doesn't fly with my little guy.  He will tell you its too tight and it hurts.

As we were leaving we were accompanied on the elevator with what seemed to me to be a doctor.  We were going to the same floor as he commented on how lucky we were.  He smiled at Thomas in the corner happily finishing up the rest of his cookie who was holding back a grin to the nice man who was talking to him.  The man smiled and comment on how the cookie was probably very well deserved and how it was so blessed to work at such a wonderful place for kids like Thomas.  My heart just beamed as the balance of joy was matched by my own.  His joy to work there and my joy to bring my son there.  It was good, it was very good.  What a contrast experience to the day I had experienced last week. 

I know I haven't been keeping up with my blog as much and for my readers, I truly apologize.  I have been leaning on my Facebook page a little more than I should have been.  I will be sure to keep writing and sharing our journey with you.

Where we are:  ENT follow up next Wednesday to check his hearing and the tubes since his surgery last month.  We have a Cardiologists follow up coming up soon to check on his heart murmur.  Those are the two immediate ones.  I will need to check our list to see where we are with everyone else, but I think most of there appointments will be coming up in the Spring.  Thomas is doing well in 3k and can spell and write his name on his own and is happy to do it for anyone who asks.  We are working on letters and sounds, counting, etc.  He is a bit stubborn in giving me the information at times, but I think its in there and he is just showing me he has control.  As I said in the opening, Thomas is truly a blessing and a shining light to all who have the honor of knowing him.  He attracts people everywhere we go and isn't afraid to talk to them at all.  He is also unfiltered which usually leads to a laugh or a smile and at times a small cringe from me.  He is embraced by others and is prayed for and loved on by so many.  I knew all of my children were not my own but God's, but with Thomas I can feel he is God's child with every part of my being.

Here is my baby Thomas(3 yrs old), 8 cm taller and his sweet pup, Chelsea (10 months old)

^{Tonight, I want to leave with you with a verse I have been studying this week for my own personal devotional time and now as I focus on Thomas and his little body, it seems only fitting.}

 

^{Psalms 139: 13-18}

¹³ For you created my inmost being;
    you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
¹⁷ How precious to me are your thoughts, God!
    How vast is the sum of them!
¹⁸ Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.