Well, That's done (MRI Spine/Brain)

Today was Thomas' scheduled MRI on his spine at Children's Healthcare of Atlanta - Egleston.  I was quite anxious about the procedure itself since I myself have never had a MRI and the fact that he would have to be sedated.  The day before a nurse from the department called me and chatted and she helped to reassure me and to calm my fears.  Luckily, we had to be there at 8am! I truly love early appointments for procedures, surgeries or tests.  It is so much easier to pick up a sleeping baby and throw them in the car and head straight there then to have them play and run around asking for food or drink they can't have.  Not to mention there is usually no wait and everyone is running on time. 

This morning went great! We were up and out, minimal traffic and there on time.  It only took me a hour with getting gas on the way.  While we were being prepped this fabulous doctor came in, Dr. Bob as they referred to him.  He has some crazy hair that made me giggle on the inside.  Over the last few months I have learned to cope with going through these procedures and test alone with just me and my little man.  So, I usually find things to entertain me and this man did just that.  I felt like I was a kid myself.  We discussed his recent cough and how it may cause the sedation to not be a good choice at this time.  I was adamant that his cough had improved due to the breathing treatments and the only reason why he was coughing now is because they had upset him so.  I also mentioned that we would be back next week for a MRI on his brain for the neurologists.  He trusted my judgement on the cough but said that at any moment did he feel that Thomas would be endanger he would quit immediately.  Of course, I agreed and thanked him.  Then he proceeded to tell me that he would see if they could go ahead and do his brain today to prevent him from being sedated again.  My heart skipped a beat!! That was plan all along, but after making numerous phone calls and pleas the answer was always 'no ma'am we can't do that'.  Dr. Bob left the room and spoke with some people.  He ran back by, "we just need authorization from insurance cross your fingers."  I was so getting my hopes up, something told me that it was all going to be just fine and work out in our favor.  I was quite calm.  It also helps that they have fabulous nurses who are always there asking me if I need anything and what they can do for Thomas.  I make instant friends with each of them, but its unusual for me to contect with a doctor in such a way.  Finally, Dr. Bob popped back in the room and said we were a go.  Then he and the nurse discussed the IV and was ready to go.  He was ready before the room was. 

Thomas truly detested the IV being put in, as any of us do.  But they had put the numbing cream on both of his hands for quite a while in an effort to ease his pain.  Once it was on they covered it with a diaper to try to keep his mind of it.  Yeah right, they don't know Thomas.  Thomas didn't want a name band on, Thomas didn't even want to be weighed.  They literally had to weigh me holding him and then get my weight without him.  Once they were ready though, they gave him the good stuff and he went limp in my arms.  It was the craziest feeling I have ever had.  Away he went and then I was alone in that room to wait.  I was extremely proud of myself though, today I got up and went to the cafeteria to eat and make phone calls.  They said it would be at least 45 minutes to a hour so I knew I could be gone at least thirty minutes without having to feel frantic.  I never want to leave where they left me with my child.  I am always scared something will happen and I won't be there or back fast enough.  I want to be there the minute they bring him back because I know he knows his mommy is there.  I also have a fear of getting lost in the hospital and looking stupid.  I am working on that though!

He came back right on and slept for about fifteen more minutes.  Then he opened his eyes and looked at me, smiled and closed them again.  It was so beautiful.  A few minutes later he opened his eyes and began to talk to me.  So I scooped him up to hold him and he saw his beautiful balloon that the nurses had brought me while I was waiting.  He was so happy!!  It was much better than when he comes out of anesthesia from surgery.  He immediately started drinking his juice from the nurse and chowing down on his crackers.  They took out his IV when they saw his smiling face and off we went.  It was a long morning, but I am so relieved to have it done since I have been dreading it for so long now.  Love living here and so grateful for the Children's Hospital and all of the angels that work for them!!

After coming home you would have never known what all we had been through this morning except for the small bruise he has on his little hand from the IV.  The results will be provided to the ordering doctors in two business days was what I was told.  So, I am assuming I won't hear anything from either of them until Friday possibly Tuesday due to the holiday.  Not sure how much I will learn over the phone anyway as I am sure the Orthopedic Surgeon will want an appointment to discuss the results and I am fine with that as I feel that we will need to discuss it in more detail if possible.  He will also be able to now provide clearance for his surgery so I will need to get that rescheduled in the coming weeks. 

We have an appointment with the neurologists on Wednesday of next week.  I don't have any expectations as of yet for this appointment.  I am so grateful that thanks to Dr. Bob, the neurologists will already have the MRI results of Thomas' brain to help him out with any additional information that he may need or to rule out any suspensions.  (On a side note, eventually I will be able to spell neurologists without having to correct it with the spell checker) 

I could go really deep into some stuff right now, but I will spare you tonight.  Just know that I have a renewed spirit with my Lord and a new angel on my side.  Thomas is going to do great things in this life even with his imperfect vessel.

2 Corinthians 5:1 Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands.

Hearing Tests - Check

Thomas and I had a wonderful visit first thing this morning at Scottish Rite to meet with Audiology.  We discussed the new possible diagnosis and how Duane Syndrome and Wildervanck are linked to hearing loss.  We also discussed the fact that he has been evaluated as having a speech delay and is recommended to speech therapy.  So, she went through some very specific intense testing of his hearing and everything shows that the tubes are open and working and he is hearing the four main frequencies necessary for speech.  She also explained that at this time we cannot determine if the tubes are a temporary fix for his hearing issues.  We know that for now the tubes are working and he can hear. 

She did recommend a hearing check every three months in order to catch any issues before they affect development again.  We both assume once the tubes begin to fail that he will loose his hearing.  So, the sooner we can catch it then we can fix it and prevent any secondary delays.

I really liked her and the way they conducted themselves in testing my baby.  Although I am not happy that it takes me over a hour to get to that location, I am really tempted to make all of his hearing test at that location.  You cannot put a price on a mother's trust and confidence in the people working with her child.

On another note, I have everything ready to go for my kit back to Boston.  I just need to fill the last tube with Thomas' saliva.  I have been putting that one off since it took quite a while to collect it from the older boys.

Thank you for the prayers and support!! It is a relief to know that my baby is hearing us completely at this time!!!

"Wildervanck Syndrome" may be our label

Again, I want to say "What's in a name?"  Especially if its a name that no one is familiar with or have heard of before.  It helps explain nothing to most of us.  How is he? Good.  What do they think it is? Wildervanck Syndrome.  What's that? A rare birth disorder involving hearing loss, fusion of vertebrae and eye movement abnormalities.  Have they confirmed it? Not yet, but with syndromes it currently seems to be the best fit at this time.

Wildervanck - Basically the triad of Duane Syndrome, Klippel-Feil deformity of the spine (neck fusion) and hearing loss, which can also have additional related anomalies.  In 70% of patients, DS is the only disorder the individual has. However, other conditions and syndromes have been associated with DS. These include malformation of the skeleton, ears, eyes, kidneys, and nervous system, as well as the following: Okihiro syndrome (an association of DS with forearm malformation and hearing loss), Wildervanck syndrome (fusion of neck vertebrae and hearing loss), Holt-Oram syndrome (abnormalities of the upper limbs and heart), morning-glory syndrome (abnormalities of the optic disc or blind spot), and Goldenhar syndrome (malformation of the jaw, cheek, and ear, usually on 1 side of the face).

I received the consult report today from the genetics specialists that we saw a couple of weeks ago. I didn't want to mention an actual syndrome name until I had further confirmation that it is a real possibility.  Based on the genetics specialists extensive research her report states that the suspected syndrome is indeed Wildervanck, also known as cervico-oculo-acoustic syndrome.  In Wildervanck syndrome, several hallmark features include short stature and hearing loss, both of which Thomas has although he clearly has other findings some of which can be seen with this disorder as well. Because his larger constellation of findings can certainly be seen with chromosome deletions, duplications, or extra or lost chromosomes, the first order of investigation will be to complete a chromosome MicroArray study. This along with the MRI of his brain and updated hearing tests will allow her to review these test results and confirm our suspicion that Wildervanck syndrome is the diagnosis for his overall condition.  She did note that he has 4th and 5th toe clinodactyly bilaterally, which is the new characteristic that she found and has now been added to his list of features. 

Trying to research Wildervanck feels like chasing a rabbit through his rabbit holes.  I will find one article referencing a case study and then find more medical terminology which leads me to another search.  The information is so limited that there is basically one definition found over and over again and then random case studies published by doctors with patients showing Wildervanck symptoms.  Each case is very, unique and different.   


So, let's say for sure its Wildervanck, what does this really mean?  Well, upon completion of the test and our genetics specialists further her investigation, we will have a follow up appointment in the next three to four months where she will explain the prognosis.  The doctor from Boston confirmed that she has other patients stating Wildervanck and that they would be able to do a side by side comparison of their DNA structure to help determine similarities and differences.  From my understanding so far, it is not hereditary but instead spontaneous and sporadic.  Complications of Wildervanck syndrome are secondary conditions, symptoms, or other disorders that are caused by Wildervanck syndrome which we will need to monitor.


Honestly though, I feel as though nothing has changed.  There are no special support groups for his syndrome, walks for the cause or specialists who know how to monitor his situation specifically, etc.  So, there is really no relief as I had hoped in naming the issues at hand.  Maybe it will mean something eventually, but currently I don't know. Although its not realistic, I was almost hoping the report would say that I am a crazy mom who is making symptoms up for my son to get attention and that I need therapy to let it go!!  Just to let you know where my mind goes sometimes.  Instead, I got more confirmation that these are real issues and another specialists confirms the symptoms and has a suspect syndrome in order to help define what we can to provide him the best health care options.


Tomorrow morning we go for another hearing test to try and determine if the tubes are working for his hearing loss and if so how well.  Based on our information the tubes may only be a temporary fix, but we will deal with those obstacles as they come.  I will let you know tomorrow how it goes and if I know anything more.  Please pray that he is calm and cooperates so that we can get some good results.  Thank you!

Reality

It never fails the minute I get swept up in the moment or feel as though I am living again, reality shows up and reminds me that things aren't quite as they seem.  I know this phase is temporary and once we get through this it will be better.  One day soon, we will know for sure what Thomas is dealing with and how to monitor him and just live again!!  I will be able to breathe without holding my breath.  I will quit having to brace myself for the next thing that is coming.  The last couple of months have trained me to behave like this as sad as it is to say.  We, the doctors and I, don't even go looking for things where Thomas is concerned, they are just casually discovered.  I think it was God's plan to slowly unfold his imperfections to us in a very interesting and meticulous manner. 

I am always grateful for his smiling face and happy demeanor, while the questions and uneasiness is unsettling inside.  I watch him play and learn and do new things that are wonderful and amazing daily! Then think in a couple of weeks he will have a MRI on his spine and brain.  The procedure unnerves and the results scare me to death.  Again, reality keeps coming back to me.  I try to downplay that he is fine and there really isn't anything going on but there is.  His laugh makes my heart smile and just to watch him is amazing.  There are many other mother's who are going through their own struggles with their children whose problems are much greater than mine and my heart aches for them tremendously.  Especially during this holiday season when the focus is to bring magic to your children and fill your homes with love, hope and faith.  For me this holiday season is a wonderful time to teach my children the importance of faith, praying, and what all God has done for us.  I cannot imagine how much worse I would feel if I didn't have my faith in our Father God.  Being a Christian doesn't mean you don't have bad days or get depressed when things in life get messy and complicated.  What is does mean though is that there is always a happy ending, as God will always take care of his children.

Today, I had no plans.  Imagine that! If you knew me you would know that is absolutely insane.  I quickly remembered that our Pediatrician office was having a Christmas party so I dressed the kids and off we went.  It was a wonderful experience to see all of the doctors and nurses playing games, putting on tattoos, serving food.  All of them loving on your kids and asking them how they are.  They inquired about Thomas and pointed out my oldest nasty cough.  We road the train and saw the fire truck.  It was an amazing good time with people I have come to know, love and trust.  Then we came home to put up another tree, the Christmas village, make a Gingerbread house and other Christmas preparations.

In the midst of all of this, a package came in the mail today.  It was my today's reality:

Our kit from Boston arrived.  I thought it was interesting enough to share with you all as I have never actually seen a DNA kit.  There is one for each of us with specific instructions and a stack full of paperwork.  Looks like I will be busy for the next couple of nights making sure I get everything thoroughly completely and signed in all the right places.  I have so much hope that this will help provide not only answers for us but hopefully to many others.  It truly is surreal how much our technology has changed and evolved to allow us to even participate in something like this with a few swabs. 

It is my hope and prayer that each of you who take the time to read my blog, think of us and pray for us, will feel the true magic of the Christmas season.  The amazing story of the birth of Christ Jesus from the beginning to the end.  God walked on the dirt that we walk on today and he knows your reality.  He knows your heart, let him in.  He will comfort you while you cry, he will heal you where it hurts and he will be there in your stillness.  

"For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace." Isiah 9:6

Add it to the list. . . more therapy. . .

Thomas and I went in for a full speech evaluation today at the recommendation of our Pediatrician.  For the last two to three check ups he has not been saying as many words as she would like.  So, we went through the testing and spent the session discussing history and issues.  The best part about today's session is that at the end she was able to review the recommendations with me immediately, so I don't have to wait to see the results.  Of course, her report will be more detailed when I get it, but I know where he stands.  He isn't terrible, but he could be doing a lot better.  He is below average for his responsive language but is doing well and for his expressive language is lower on the scale and could use some work.  Most children don't have much discrepancy between the two, but she believes that his delays are based on the periods of time where his hearing was effected.  The good news is she believes that this will not be a long term therapy for him.  She explained that with speech therapy we can work on his motor skills and get him caught up and she truly believes once he catches on that he will take off and will no longer need it. 

Another suggestion she made was to discuss getting him into some Occupational Therapy with our current physical therapists.  I don't know enough about OT and how it differs from PT, but the way she was discussing it she was concerned more about his safety being an issue and how OT would benefit him.  Its worth asking about.  While I don't want to add more things to the list of medical needs nor financial obligations, I do want to do all I can for him now while he is little and still developing.

I went into the evaluation not sure he really needed it to be honest, but wasn't shocked with the outcome either.  I have come to expect that when we have him evaluated or checked for something 9 times out of 10 he has it or needs it.  To me he is my 19 month old who babbles with a word here or there.  He communicates fairly well with minor tantrums.  He is picking up sign language easily and I love being able to communicate with him in that fashion.  But in our discussions I realized that he really could be doing more and I don't want him to be at a disadvantage in an area that he doesn't have to be.  There are enough challenges that may cause issues for him now or later down the road for him to have to overcome.

On a personal challenge, I have been a bit frustrated lately with life throwing balls at me some being my fault some not.  Then one thing after another with Thomas, I just wanted to scream at the top of my lungs "Stop!, doesn't anyone know its Christmas time? I am suppose to be shopping and giddy with excitement."  Most times I can distract myself with decorations, playing or reading with the kids, but with two crappy days back to back it just brought me down.  I decided it was time for a good pity party.  So, this afternoon I grabbed some pieces of chocolate and laid in my bed while watching drama television.  I was thinking about all the therapist had said to day and thinking about the doctor's report I got today.  It explained in more detail his spine issues and even another diagnosis that no one has yet to mention to me.  I got furious!!  Why didn't someone tell me? Is it not important?  Should I be concerned?  Why am I looking up medical terms I don't know?  I am seriously not trying to make a mountain out of a mole hill here.  I don't like drama, I don't know what to say to others all the time.  I am not a doctor or a nurse, I went into business and finance.  UGH!  

My afternoon finally was coming to a close and I got to talk to my mommy.  I vented and ranted and whined about all that had happened to me and all the information I had gotten and what it all means.  She stopped me and told me to look at Thomas.  Thomas at the time was taking Daddy's metal shoe horn and was tapping it against all of the pieces of furniture around me and giggling.  Its the sweetest sound!  When you look at him you see none of this, you see a happy child learning and loving everything about his life.  She gave me some great advice which was to "accept it."  I need to just accept that the doctors and therapist are going to discover all the things that are not normal in my son and that it is going to be okay.  God gave me Thomas as a special gift and he will always have these challenges.  He is a special child.  It is not going to be easy but God will equip me if I ask.  I thought I had accepted it, but today I realized maybe I had not because when she said it I thought it was a great idea.  I was still fighting it, fighting it all maybe even denying it. 

Tonight, I may still finish off with my pity party but then I will work towards acceptance.  True acceptance.  I know my prayers will change as my journey changes as I am always learning how to be a better follower of Christ. 

"Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." Phil 4:6-8

This picture just happened to fit for today. 
Thomas likes to say prayers with us and today he
wanted to pray over his peaches. 
Just too darn cute not to get a picture of.

Those Baby Blues. . .

Today we had an appointment with our pediatric ophthalmologists, otherwise known as the eye doctor.  He is extremely familiar with Duane Syndrome and has published several articles and done many studies.  While in the medical world and from the intellectual side of things that is wonderful, there is the other side I like just as much.  His personality and mannerisms with me and my child.  He is intently staring into my child baby blues while singing, clicking, waving a toy to make them move in every direction.  It is entertaining and fascinating all at once.  After a couple of minutes of this he sits back and tells me how wonderful he looks.  The doctor explained that he looks the best he has yet since being seen by him.  His eyes have found their natural alignment in the center, which means that middle muscle has relaxes as it was suppose too to allow the eyes to look straight when he is looking straight.  In the world of Duane Syndrome that is the best that it gets!!  If the eyes are not lined up properly then surgery is usually an option to try to line them up.  This is extremely risky as with Duane Syndrome there is no way of knowing how the nerves are wired.  So, cutting the muscle in a certain area may cause a dramatic opposite reaction than expected, which then leads to possibility of multiple surgeries in an effort to fix it.  We don't know how the nerves are wired in his eyes.

I was excited to hear how excited he was at the progress that his eyes had made on their own with no intervention.  God is amazing!!  I then proceed down my list of questions that I had brought with me and he smiled and went through each one with me.  Each one was a positive and reassuring response with information and knowledge to back them up.  If he didn't know, he would say so and that was appreciated as well.  While there is no cure for Duane Syndrome and his eyes will never turn outward towards his ear, his eyes and his brain have been working together since birth to compensate.  He also said that most children born with this condition do not suffer from double vision because the brain figures out how to shut down the eye that isn't working properly to prevent it.  The goal is to have binocular vision most of the time.

Thomas has figured out the best position for him is with his head tilted to the right.  The doctor explained that its important for people with Duanes to find that place that allows them to see more clearly.  That is his spot!  He said the head tilt is no more dramatic than any other person as he points out how I am tilting my head listening to him.  He also explained how he is not as hindered as most would think.  If someone calls your name and you turn to look at them, you don't turn your eyes to them.  You naturally turn your head to look at them.  So it many ways, he is still going to react normal or look like he is when he is compensating.  We discussed the impact of the neck fusion and he assured me that this too would be something that would not hinder him enough to make a dramatic difference.  He also stated that he didn't see any reason why he would have any neck or back pain at this point.

He then dilated his eyes and we waited to be seen again.  As soon as he shined the light through the lens into my child's eye he stated how beautiful they were.  A couple more steps and he stated "no glasses".  What a relief!!  The nerves in his eyes look strong and healthy and everything is functioning properly.  We discussed a couple of more things, updated his medical information, mentioned the possible syndrome and he said as far as his eyes were concerned he was doing wonderful.  We go back in six months for monitoring.

My little boy is so beautiful in so many ways from the silky feel of his hair, those deep blue eyes when they are staring intensely or even his smile that uses every muscle in his face.  He knows nothing different than this and he is so happy and enjoys so much!!  While I worry and stress about the unknown factors, the appointments, etc., it all melts away in the moments that I am near him.  Tonight I had a  Christmas dinner with some great friends at the church and it was so wonderful to sit like a lady, enjoy a meal with great conversation and then a musical concert after wards.  I was completely swept away and it was the closest thing to getting a break from it all in quite a while.  But as I sit here my highlight was when I went and got my three smiling boys to take them home.  Thomas looked up at me and squealed with his whole body going tense.  He then jumped up my arms practically on my face and took both of his little hands and squeezed me.  I then proceeded to get three to four more squeezes from him as we proceeded out to the car.  Never doubt that his love is immense!!     He is happy, he is strong, and he will overcome any challenges he may face.  And I, his mommy, will always be right there behind him being his loudest and biggest cheerleader.

Many things have happened to me and around me in my life.  Things that are painful, embarrassing, ugly and tragic, but all of them have prepared me and led me to this place.  I would have never become the woman that I am today if it weren't for the journey that I have been on.  While we can never see clearly how the end is going to look like, we should always have faith that in the end God will prevail and his will shall be done.  Many feelings, thoughts and emotions are provoked in me as I heal from things and move past them to focus on my steps now.  I know alone I am not strong enough, but with God anything is possible.  You can be strong enough too, if you allow him in.  Today was a good day.  It was long, it was ran on little sleep, but I feel lifted.

Thomas with his eyes dilated today

Boston is Interested and I'm Excited!!!

So, it seems that a day doesn't go by that I don't talk to a doctor or nurse, about tests, scheduling, billing, etc.  But today was a little different, because you see today I talked with the contact person at Engle Laboratory.  Engle Laboratory is an HHMI molecular genetics and developmental neuroscience research lab at the Children's Hospital Boston and affiliated with Harvard Medical School.  

I had originally contacted her back in October because in my fabulous googling abilities I was able to find a lot of information on their site that defined Duane Syndrome.  Currently they are working on a research study for clinical and genetic studies of complex eye movement syndromes called the Congenital Cranial Dysinnervation Disorders (CCDDs).  In case you were wondering, Duane Syndrome is a CCDD.  Okay, so now that you have a background that doesn't mean that much to you except probably some key words like research and Harvard.  

Our family is enrolling in their study.  How is awesome is that!!  We have been invited to be a part of this great study to try and identify the genetic mapping of Duane Syndrome and their related Syndromes.  Yes, you heard me right, they are very familiar with the related syndromes and are testing those as well.  After coming home from seeing the genetics specialists on Tuesday, I made the final decision to enroll.  When you read the consent form it can spook you on the ramifications of enrolling in such a research program.  I know that they have to disclose as much as possible to you, but I truly believe this will be more of a benefit to us and possibly to many others than harmful to us.  

I sent the contact person a message about enrolling and then inquired about if their team would be able to help us confirm the syndrome that we suspect Thomas carries.  I thought we as much knowledge as they have acquired they could at least point me in the right direction or help confirm what we find genetically.  She promptly answered me with several questions, which I was able to answer immediately.  She then proceeded to talk with Dr. Engle about Thomas' case and discuss a plan for us.  I couldn't believe she went and talked directly to Dr. Engle the head of the laboratory in which it is named.  Dr. Engle recommends that we go ahead and participate in the research study first as they are about to target a few other families that they have enrolled (in which there is a family member affected with the same suspected syndrome) for exome sequencing-basically, they can look at all the genes that make up Thomas' DNA and look at possible shared mutations with other individuals who have the same clinical findings.  Then when they have a finding Dr. Engle would recommend I be contacted and have Thomas travel to Boston for a detailed evaluation at which time they could also offer confirmatory testing such that our testing result could be reported back to our genetic counselor, as required.

I was elated!!!  To think that they could take the DNA from Thomas and create a map of it and then compare is side by side with other maps with similar symptoms.  As rare as Duanes is, the suspected syndrome is even rarer.  This would by far be the closest type of testing that we can do to confirm in a more black or white setting the syndrome Thomas has.  This would allow us to be more informed on his current condition, his prognosis and best way to plan out his care throughout the duration of his life.  Not to mention the continued research information we would be providing to the program.  A program that has already identified several genes linked to Duane Syndrome.  Its funny how the things that make you happy change as circumstances and life around you changes.

When I shared this information with my husband, I think all he heard was go to Boston because he started to share his concern about costs.  I realize this is the typical male response as he is the breadwinner for our home and finances have gotten a bit tight with the medical bills coming non stop.  However, enrolling in the research study is free to us.  As for the flight and the actual clinical visit, I am not sure but we have a lot of people who are really stepping up and are wanting to help us beyond the prayers. This brings me to another exciting event I must share with you.

I hope you all can pull up this link as it is an event sent up through Facebook, if not you can try to cut and paste.  I am still new at this blog stuff.  But we have some sweet friends who are offering discounted golf rounds with a portion going to a medical fund for us to continue to help pay for Thomas medical bills.  They are also accepting new or used golf equipment to sell.  

Tee Time 4 Thomas

http://www.facebook.com/events/146474042125721/

My hope is that once the discovery phase is complete the maintenance will not costs as much, but I may be naive on that point.    We have also started looking into applying for the Medcaid/Katie Beckett program, but its a long stressful process and there are no guarantees.  

We have such an amazing support system it brings tears to my eyes!!  Again, I say this is all Father God's plan and he is going to take care of us!!  Every note, every card, and every hug touches my soul and on the harder days that is what lifts me up.  I just can't thank you enough.

Next up. . . eye doctor on Monday. 

“The Lord will give grace and glory; no good thing will He withhold from those who walk uprightly.” Psalms 84:11

Thomas at school with mommy today!  19  months old and 1 day