Eye Doctor Appointment Results ~ Aug 27, 2012

I was concerned that as Thomas got older that the anxiety of seeing doctor's would intensify and get worse.  Today he proved to me the completely opposite.  I told him ahead of time that we were going to get his eyes checked.  He kept repeating me over and over. . ."doctor eyes checked" I didn't know if he really understood or if he was just repeating me.  Then in the waiting room he checked my ears, my mouth and my eyes.  This is something he has started doing at home, playing doctor, and I think it is super sweet. 

We were finally called back and the doctor came in and Thomas went and climbed up in the big chair all by himself and sat there.  The doctor giggled and said "not sure how this is going to work?"  I agreed and said I didn't know either.  But I want you to know he sat there and did everything he needed to for the doctor.  He checked the movement and the muscle strength, etc.  Once we were done, the doctor explained that both eyes are still working well together and the muscle is good and strong.  The left eye will still roll and possibly upshoot when he gets tired because in kids the brain will get tired and quit telling the muscle in the eye what to do.  It only really happens when he gets tired and I am not sure how much other people really notice.  I know I do and people who are around him all the time.  He also agreed that Thomas clearly has what is known as 'crocodile tears'.  It has to do with the nerves that connect from your mouth to the eyes and is quite common with people who have Duane Syndrome.  We mainly wanted to rule out that he didn't have a clogged tear duct that may require surgery.  He doesn't though, his eyes will just water up if he is eating, drinking or possibly smells something that wakes up his senses.  Its a strange phenomenon to me, but its not a big deal in the grand scheme of things.

And that was it!! We didn't have to get his eyes dilated this time or anything else.  We were done!! He gave me a copy of the picture eye chart to work with him so that at our next visit we could possibly do it.  No pressure, he said most kids can't do it until they are age 3 or 4.  But I think Thomas would be capable, we will see.  We go back in six months.

Thank you for your prayers!!  I am relieved with our appointment and grateful that there is nothing of concern with his eyes at this time.  He is compensating well and knows nothing different!!

No More Speech Therapy. . . .prayers for eye doctor appt Monday

I still can't believe our insurance company sometimes.  I know you all have your own battles with the beast.  They are willing to pay over $900 dollars for a feeding evaluation after paying over $900 for a speech evaluation but they don't want to pay $400 dollars for an office visit with out sub specialists geneticists.  Whatever!!  I will keep fighting and appealing and maybe they will eventually pay something.  Who knows!?!

The great news is that Thomas no longer needs speech therapy!!  YAY!!  In fact, he has made up for lost time and then some.  He is now above average on his receptive and expressive language.  I was SO Proud!! If you are around Thomas any now you can hear him talking in full sentences and with a wide vocabulary.  I am so thankful for great therapist, a great ENT, teaching him sign language and the time and effort it took by all to get him where he is today.  The goal is to keep his ears clear and open through tubes or anything else so that he can continue to hear well and thrive!!

I am excited about the feeding evaluation.  Thomas is so little and below any chart and his eating is not consistent.  If he could live on yogurt and fruit he would!  He avoids a lot of hard or crunchy foods.  He also will chew up some meat and then routinely spit it out.  Its quite inconsistent to me.  He loves broccoli, but then he will spit it out at times too.  The speech therapist was very interested to hear this and pushed for the feeding evaluation, which does make me happy.  Have I mentioned again how much I love all of the therapist at Children's Healthcare of Atlanta!!  That appointment is set for the beginning of October.

We will also have Thomas' 2.5 year check up in October where we will most likely get our referral to an Endocrinologist.  There is still a very good chance that Thomas' pituitary gland did not develop correctly and he has a growth hormone deficiency.  I have a mutual friend whose son is similar to Thomas in some conditions including KFS and Failure to Thrive.  She is on the same journey as us and the concern was that growth hormone replacement could cause more harm to the spine and its deformities.  But the latest specialists stated that if he needs growth hormones then he needs them and the spine is going to form how its going to form and the hormones will not impact it enough to make a difference.  That information is so valuable to us.  We will see our Pediatrician, the Endocrinologist and we have our follow up with our Pediatric Orthopedic Surgeon.  Between those three, we will decide our path for Thomas. 

Monday, August 27th we have our follow up with Thomas' Ophthalmologists.  Thomas' eyes don't seem to be holding him back much at all, take that Duane Syndrome.  Most times he looks completely normal and it seems to me most people don't notice he has an issue.  If they do see it they don't vocalize it to me.  His left eye does seem to wander a bit especially when he is getting tired.  At this six month check up we are just making sure everything looks good and his vision is still good.  I don't have an reason for concern, but I am not the expert. I will update you all after the appointment.


Your continued prayers, love and support mean more to me than you will ever know.  The appointment last week was not the best news and while I know we aren't going to always have great appointments it still takes its emotional toll on me.  I am thankful for those of you who care and give me encouraging words and remind me about the journey.  A friend wrote this to me and it inspired me to the core "Hang in there, I know you do a wonderful job of staying in the moment and enjoying with him, and that is so good, and so healthy. Day by day... things will unfold and if it is surgery down the road, all of that technology is improving, hold on to that. You are doing such a great job as his advocate and I have no doubt in your determination and wonderful mothering... breathe in and know that time is on your side Allison and we will all keep searching and sharing."

Thank you!!

Thomas is acting like a normal, active 2 year old.  He is going tee tee on the potty quite regularly but he still has lots of accidents.  Last night he peed on his brothers foot!! It was hilarious!!  He knows lots of colors, he is starting to count, we are working on letter recognition, he loves 'reading' to his big brother Tyler. . .he has started laughing a silly laugh and cracks himself up.  I can't express enough how in love I am with Thomas!!

Nuerosurgeon Check up Today.

Wow! Today was long and busy.  This mama bear is ready to crawl in her bed and prepare for Friday.  We started with Mom's Morning Out, which is crazy but fun.  There are so many cuties in there!!  Its such a blessing to enjoy them for my job. 

We left Mom's Morning Out to go to his appointment at the Spine Care Clinic at Scottish Rite.  It is really a pleasure to go there if you have to endure such a thing with your little one.  They are so nice and understanding and are always concerned about the level of pain he might be in.  I was able to brag about how well he is doing and how strong he is getting.  Our appointment went well.  Thomas did good through the x-rays, especially for a 2 year old missing his nap.  I do have to admit while the radiology tech was pleasant I never like the uneducated comments that are made during the x-rays.  They move him one way and take a picture then go and look and you hear the different comments that shows that they have no clue about his case.  Its a little unnerving to me but in the same respect I can't fault them either, they are just doing their job.  NO he hasn't had surgery.  YES there is lots of fusion.  NO he can't bend like that.  YES that is normal for him.  *sighs*

Most importantly, I love, love, love the doctor.  He is so friendly and down to earth.  He will sit their calmly and answer your questions until you are completely comfortable and understand the information.  The doctor came in an explained to me today that Thomas' neck has continued to stay stable.  They were able to get some x-rays showing movement and found one area that needs to be watched.  He has fusion in his neck from C2-C3 and C4-C7.  There is movement between C3 and C4 which in most circumstances would be good, but it can cause reason for concern if it begins to shift against the bone instead of correct movement.  He eluded to the fact that if that were to happen and its probable that we would need to correct it with surgery with a fusion.  That would also limit if neck mobility quite a bit.  Not really the news that I wanted to hear, but at least I know and can be specific in our prayers that that area will continue to cooperate for Thomas now and years and years to come.

The doctor also checked his reflexes and movement in his legs.  He mentioned again that at his last MRI that the spinal canal looked nice and open.  We are both hoping his spine will continue to allow for his spinal cord to not be compromised in any way. 

Waiting to see each of the people in the clinic, x-rays and doctor.  He did great!

Days like today remind me of our reality.  The grim reality of what is going on inside my little man that I don't have to see or face when I am playing with my smiling, adorable little blue eyed blonde headed 2 year old!! I so enjoy him and it really does pain me to think that his life will not always be manageable.  I have always had a good relationship with my Lord and Savior, but it has never seemed more important for me to have a daily walk with him and my boys how to walk in the light. I would not be able to get up each morning without knowing that someone bigger than me, bigger than my problems, bigger than this earth has got me and my babies in his hands.  I will process this information, pray, meditate and spend the next couple of days working to give this back to God. 

On our way home after a very long day!

Thank you for all of your prayers and support.  Overall, he is doing great!! Surpassing what all of the therapist had set for goals for him and is a happy precious little boy.  We walk into a place and he starts waiving "Hi Man".  Hee hee!! I love taking him places, he just makes everyone smile and they don't even know him.  We could have got much worse news today, but as for now I will take that all looks well see you in 6 months.

Our speech evaluation got moved to tomorrow too!! I am excited! They had a cancellation and called me today.  I will update you tomorrow afternoon.  I would love nothing more than for them to tell me I wasted my time and he doesn't need it, otherwise we will move forward with private speech therapy and watch him exceed there as well!

"The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17

Here we go!!

You just can't look at this picture with a straight face. . . I mean, really.  This is a great image of how determined he is to do all that he wants to do with no limitations.  I truly think that only an expert hand can feel the low tone in him at this point, because he has gotten so strong and is doing so well.  All of his therapist are blown away with his progress and they are all starting to taper off on appointments.  I am so proud and so happy for both us!! 

Next week is our six month check up with the Neuro Spine Care for Kids Program with Thomas' Pediatric Neurosurgeon and his team.  The are so nice and thorough, its a pleasure to go and learn about what is going on inside Thomas with his spine and neck vertebrae.  Most likely we will have a round of x-rays and then meet to discuss if there have been any changes since his last visit and discuss his next MRI.  I really despise putting his little body through so much radiation, but its the only way to truly see and monitor what is going on with his bone structure as he grows.  I have to remind myself that the long term affects on his body from the radiation outweigh the prevention that we are attempting to do for his spine and neck.

Prayers are always appreciated for this little man.  I pray that everything is stable and looking good and we can just continue and move forward without any further intervention at this time.

Thank you for your continuous prayers and support, it means more to us than you will ever know.

I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you." Genesis 28:15

Growing in more ways than one!

Yesterday we had our three month height and weight check on Thomas.  We were most concerned about his height growth, since he had actually flat lined on his growth chart.  I was so excited yesterday to find out that he had caught up for height!! His height is still off the curve, but he is back on his curve.  His weight has dropped down a bit on the curve, but this is normal for Thomas as you can see for it to go up and down depending on his caloric intake.

As of 8/03/2012 at 2 years 3 months weighs 23.2 lbs and is 32.7 inches tall with a BMI of 15.25 kg/m2.  I am very pleased with this at this time.  We will go back for another check up in three months when he is 2 and a half.

This does not mean we are in the all clear for the Endocrinologists, in fact, we will probably see one before the year is out.  But I am learning that doesn't mean we will have clear answers then either.  I have since learned that if his pituitary gland did not develop properly and is effecting his growth, they will suggest growth hormones.  However, given that Thomas also has KFS they may not want to give him the growth hormones because their is not enough research to suggest that the growth hormones would not compromise the spine in a negative way.  So once again, we have a issue that may not have a clear answer and we will just need to continue to pray that Thomas will grow and get stronger and little miracles will overcome the challenges in his life.  Most people think that a growth hormone deficiency just means that a person will be really short and small. That's what we thought also, but in reality there are other serious concerns for children with growth hormone deficiency, such as: heart strength, lung capacity, bone density, immune system function and much more!

In the meantime, we will continue to work on increasing his calories again to get his weight back up a bit on his curve the best we can.  I am not overly concerned since he has been teething and his weight has always fluctuated quite a bit.

I have also recently learned that Thomas may not be eligible for Katie Becket Medicaid waiver after all because you have to require therapy 5 times a week.  Thank goodness Thomas is not at that level of care, but in the same respect it would be nice to get Thomas qualified for some type of medical assistance.  I am so grateful that there is such a program that helps children who are really in need and it allows them to stay at home with their family with best support. 

We could not have financially made it through the last seven months without the financial contributions from our family, friends and our awesome church family and organizations like Caring for a Cause.  Our church family had created an unsolicited medical assistance fund for Thomas, which has been such an unexpected family. Caring for a Cause hosted a family event and corn hole tournament with raffle as a local Mexican restaurant that was a wonderful blessing.  I had no idea what this year was going to bring and of course their is the unknown of the coming months and years to come.  Through this God is teaching me to keep the Faith that he will provide.  I thank each of you from the bottom of my heart for every penny that you have given for our sweet Thomas' medical care this year.  We honestly, could NOT have done it without you.

Thank you for your continued prayers and support, it means the world to us to know you have our backs and will hold us when we are weak.

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