Appointments out the Wazoo and Surgery Friday

Okay, let me see if I can catch you up.  This past week we had our Pre-Op appointment with our urologists and we discussed the surgery again and the latest diagnosis and the implications.  He was quite interested and wrote down "Klippel Feil" so that he could research it further on his own and any other anomalies that could affect his area.  I love it when a doctor takes general interest like that!!  When I met with our pediatrician on Thursday she smiled and said he was really passionate and would really research too. He was also concerned about him being sedated and the hospital being aware of his special needs, so we are both being proactive and I called the hospital and brought his case to their attention for review.


So, I met with our pediatrician on Thursday which was originally set up as just a consultation for us to review where we are, what we need and where we need to be.  She is so supportive and willing to help its wonderful.  We discussed the big picture and what was missing and filled in the gaps.  We will get our occupational therapy evaluation set up and his prescription to have orthodics made for his shoes.  He also now has his very own cardiologist and we will meet with them next week.  We also discussed doing a follow up with the genetics and see where we are with the new diagnosis.  I also brought her my forms and rough draft for our application for the Deeming Waiver with the State and she helped point out what I was missing and what I still need to get before she will sign off.  I am so hoping to get that at least filed in the next three weeks.  The medical expenses for Thomas are just really stacking up quickly.  We discussed alternative ways to get help as well many of which I was already pursuing. Overall, we are both on the same page and its wonderful to have a pediatrician that I can depend on lean on for support.  


Thomas also has started a cold with a runny nose on Monday and coughing on Wednesday.  When Thomas gets a cough he seems to get that seally sounding cough very quickly which means breathing treatments.  I loaf them more than you will ever know but he has got to clear for surgery next week.  We are meeting with Anesthesiologists on Tuesday to have him looked at and to discuss the sedation for the surgery.  Its imperative that due to his neck they must use fiber optic.  Please pray that these awful treatments clear him up and we can get this surgery behind us.

Thomas has Cryptorchidism, which is a really fancy way of saying his testicle didn't develop correctly. We aren't surprised of course since so many things didn't develop correctly with Thomas. But its imperative that they cut and make sure that they can locate the undeveloped testicle or else it can lead to hormone issues and possibly cancer. We won't know for sure until they cut. If its not in the scrotum then they will have to go look in his abdomen.

I am hoping to breath easier after next week but I can tell you January has been one hell of a month.  I keep having to remind myself that the diagnosis is still new and fresh and it takes a while for these types of things to sink in.  I think other people accept it much easier that Thomas is and will always be 'special needs' whereas I have always had a bit of denial and minimized it.  Its not that bad was always my thought and my heart goes out to other kids and other moms whose situations are worse than mine.  But the problem is to look at Thomas he seems pretty okay, manages quite well and is extremely happy.  Then you look at him on paper and all of the medical issues on paper and you realize he is 'special needs'.  You add up all of the expenses for the Deeming Waiver application and you are floored at the amount of money it takes for routine testing, therapy, all of his specialists and it gets crazy insane.  I took some time and made a binder for Thomas that has tabs for each of his specialists and behind each tab is the medical records that I have received copies of and any other information from that doctor.  I figured for now it will help me relay information when I need too.  I know eventually the binder will become a drawer but I like my binder for now.


On a personal note, I am working on sharing. I think the blow of my son having KFS was so hard on me that I didn't want to share what it really meant with those around me.  How silly does that sound? I was trying to protect others.  I hate to upset others with the news because, well frankly, its not good.  I am getting better at it though and these things probably get better with time.  I shared with my regular cashier today at Kroger and she was in tears when we were done talking.  She has such a big heart it was beautiful.  The amazing thing was I told her about it, answered her questions and told her in confidence that no matter what God is good and God is going to take care of us.  She smiled and said "God Bless You".  People will use those words in passing here and there and when they are at funerals, but when she said those words to mean, she really meant for God to Bless me.  


More than once this week I have heard many compliments about the kind of mom I am being and how strong I am.  I have a hard time taking compliments.  I am not sure why that is except that I really don't think I am extraordinary in any way.  I am just a mom doing what I am suppose to do for my son with my Abba Father standing with me the whole way.  I am learning, however, to use to words as a response 'thank you'.  I do want to share with you what a sweet friend wrote about me, but what I want to share about it is that it is the prayer of every mom in their heart and you should insert your own name in it.

Please let me be an advocate for my children even if it is disruptive to my own peace. Please let me be an advocate for my children even when it means doors will close to me and people will be angered with me. Please let me be an advocate for my children even when it means that I may not get the answers I want. Please let me always put their needs first even when it means putting mine aside. Please give me the energy and the drive to not sit idle in the face of adversity, but to be a proud warrior and face it head on. Please God let me be a mother like my friend Allison Myrick Jolley who inspires me daily with her faithfulness to God and her dedication to her family.

I love you all so very much and covet your prayers daily.  I will keep you updated next week especially after Thomas' surgery.

Psalms 28:10 The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.

The Other Side. . . All the possibilities!!

There are some really exciting possibilities that we are going to be a part of and other ones that are potentials. 

First we have the potential of being seen and treated by a Neuro Spine Care for Kids!  I am meeting with our pediatrician on Thursday to discuss this as well as several other items on the list.  But I am so excited that Children's Healthcare of Atlanta has this facility here in Atlanta for children just like Thomas.  They are ranked among the top ten centers in the nation for treating the kids with unique needs such as ours.  There is nothing like finding such a resource so close to home and them actual listing Klippel Feil as condition they treat!!! YAY!!  More to come, I hope!

Second, we have had our consultation and sent in all the consent forms to Madison, Wisconsin.  The Dr who is at the University of Wisconsin Madison, so has been studying the genetics on KFS and will be continuing as he is very passionate about this. He is in contact with NORD (National Organization of Rare Diseases) and has gotten a grant through them to fund this research.  He is hoping to get enough people participating in the study to apply for another grant through NORD for continued funding.  While this won't benefit Thomas personally, it could definitely help the advanced of science now and in the future for others diagnosed with KFS.

Shriners Hospital - I have met with our sponsoring Shriner and discussed the application and approval process.  We still are uncertain about Klippel Feil being a syndrome that they would be able to assist us in but it doesn't hurt to get a second opinion at their costs.   My only hold up is medical records, which I have been working on.  Supposedly I will have these next week and then we can submit our application.  It may take four to six weeks after that. 

Babies Can't Wait - I swallowed my pride today and contacted our regional director for Babies Can't Wait in our area.  I have to admit I have a bad taste in my mouth because he was sent to them with the diagnosis of hyptonia and torticollis.  The PT infrequently came to our house and cleared him for the torticollis.  Ummm. .  . ok.  Well, now we know he doesn't have torticollis he has Klippel Feil, he still has hypotonia and is need of PT, ST and OT.  So, I requested a reevaluation of his record in light of the new diagnosis.  I hate to judge the entire program on the miss that one PT made, but its hard when its your child.  Plus I have been working with the therapists at CHOA who are amazing and extremely knowledgeable.  My thought here is, alone we cannot afford to pay for private therapist with CHOA without the Medcaid.  So, in case we don't get it I will use the free services offered by the State and pray that God will guide them to provide the best care for my son. 

Quick Update: The director just called me back and I am really excited!! We discussed the program and how it could benefit our concerns with Thomas right now.  We are going to meet next week to discuss it in more detail but it looks like we could benefit from their Speech Therapy program at this time and continue with CHOA for the PT and OT.  We talked about a spectrum of topics and she was very agreeable with me on my thinking and thoughts and what I had already done.  We discussed the Katie Beckett and even the fact that Thomas will turn 3 next year and they will help transition him to the services provide by the school system.  Oh my!! I love it when I get validation from someone else that I am doing all the right stuff!!

Deeming Waiver (Katie Beckett) Medicaid Application - Working on it.  I have started typing up the medical necessity statements, level of care required and calculated the costs basis they need.  I still need to make a phone call to make the appointment for the physiological evaluation.  I am hoping to have my documents ready for my physicians signature on Thursday but that may be a bit hopeful since I am also trying to go to sleep a bit earlier at night and not work so much.  I also need to call the Social Security office to get our denial letter.  I think I have it organized and getting it together and I am asking for help from friends who have been through this process and successful.  What a God Sent!!

So, I know my last blog seemed pretty dark and grim and for those who know me, know that it was hard for me to write that and divulge that type of information.  But I felt it was necessary to explain the dark side of this.  I think one of the hardest things about KFS is that you keep having to explain (or not) why my child is not normal and why he does need assistance.  It is hell to discover your precious baby has such a syndrome and has these challenges set before him.  There is no reason to sugar coat it.  But there are millions of possibilities and I am the type of mother who will research, make calls, read reports and dig until I can find the best care and plan for my son.  One that works for us as a family, works within our budget and works best for Thomas.  An old, dear friend said it best when she said these words: "Allison, I completely understand what you are meaning to convey. We, as parents of special needs children, will constantly walk a fine line between living for today and planning for tomorrow. It is a balance we must create as we are not borrowing troubles, simply planning for the future, whatever it may hold. I truly understand!"  It made my heart smile to have someone with such a loving heart and beautiful children like myself feel and understand what my words were trying to say.  Thank you!!


Thomas has been listed as part of the "Hands Across America" for the Rare Disease Awareness Day set for February 29, 2012.  Once you submit a picture they may use it as necessary.  I had no problem with that but to get the picture was a hoot.  After beginning our work with Wisconsin, I now support NORD and their efforts and they are one of the organizations in conjunction with Rare Disease Awareness. Check it out if you get a chance, the link is on the right side of my blog.  


Enjoy my efforts to get a decent shot:

After I took these I realized how dirty Thomas' hair had looked
from enjoying his lunch and even his face. 
These were a definite no go.

 

 

He finally got mad at that piece of paper and kept throwing it
on the ground.  So, I resorted to taping it to the wall and
attempting a good shot.

Finally a decent one that I actually submitted to the website!

Handprints Across America Photo Gallery

There's nothing wrong with him. . .

Such a double edged sword!  But really to look at him you would think nothing was wrong with him.  He looks healthy enough and he is running around and doesn't seem to have many issues accomplishing what he has set out to do as most toddlers.  As a mother, I would have to agree and when people speak those words to me I take it as a compliment.  I know they are saying it because they really don't see it and to make me feel better because it is usually followed by "he will be fine."  I am usually the one passing around the uplifting comments and encouraging others in a positive light, so I understand the source.  Don't stop saying it but the reality of it is that we don't know.   These may be the best years of his life. As a mother, I may never accept this for my son so don't ask me too.    

What? These may be the best years of his life.  Yes, the reality of it is that Klippel Feil is a crippling, debilitating degenerative disease.   Most individuals with KFS who have severe issues and additional complications typically begin having major issues in their 20s and it goes down hill from there.  I am still getting congratulations from people about his MRI, but there again it is bittersweet.  Thomas has type 3 of KFS, which of course is the most debilitating and has the potential of causing the most complications.  He also has a list of anomalies that are associated with KFS which puts him in a higher category.  Klippel Feil is more than a bone disorder, it requires total care of his body and a team of doctors.  We will need to watch his nervous system, lungs, heart, and kidneys.  He should be considered the same as if he is suffering from a spinal cord injury when it comes to his care.  We can keep a positive and optimistic outlook best we can, but the reality is these all great possibilities in his case.  So, I will do my best to find the best for him and any preventive medical care for him.  This is my new reality and this has made me raw as a mother.  If you see me, please know I am fragile right now.  I am like an old ragged sweater with a tattered piece dangling from the end. . . at any moment someone could pull it and I would completely come undone.

Where does my faith stand?  Good question, and I am glad you asked.  Its right here where its always been.  Planted firmally at my feet.  God didn't give these problems to Thomas, yet he has them.  God gave Thomas to us and for that I am grateful because I would never want to miss his smile or giggle.  God will ultimately take care of Thomas and for all us and God is good.  I firmly believe God gave me Thomas because he knew I would fight for him, he knew I would take up this challenge with my whole heart and passion.  God makes no mistakes.  God knew I had family, friends and a church who would walk with me and stand beside me.  My prayer to God now is to help me provide financially.  We have already spent about $6,500 in medical expenses on Thomas since his birth and that was just in the discovery and diagnosis.  I was floored at the number myself, because I have just done what I had to do for him and figured we would pay it off when things settled down.  Please know I am not whining or complaining and I am extremely thankful for our insurance company and the amount that they do pay for.  I am also thankful that at this time my son is not suffering nor is he fighting a life threatening illness.  But I know now, that things will never settle down.  We have more monitoring and therapies that he needs to help him have the best chance possible and I honestly don't know where that kind of money is going to come from.  So, I am planning and working to find the best for Thomas and will continue to pray that God will provide.  I am being proactive in trying to find any kind of assistance or services that can be offered to children like Thomas.  God wants me to be proactive!

I myself have not been doing a good job of taking care of myself and have attempted to deal with this information on my own.  Let's just say that didn't work.  I have started trying to talk more to others around me and share this unnerving news with them.  I want to protect others from this awful news and not bust their bubble.  I am planning on getting back to the gym, eating better, seeing my therapist and going to see my physician for a check up and maybe a little help.  I seem to be developing an ulcer again which I haven't experienced since my freshman year of college.  Good Times!  The journey will be long and hard and we are only at the beginning and Thomas is going to need me.  My whole family needs me!  So, I need to be as strong as I can spiritually, physically, emotionally and mentally. 

The good news is even when I am not taking care of myself, God is sending his angels to help take care of me.  I was surprised last week with this tender note with a gift card.  It really meant a lot to me that someone would think if me that way, but there again its God.  God never fails you!!

 

Tonight, I ask for you to keep praying.  Its okay to pray for a miracle!!  Its okay if our prayers feel unanswered.  But never stop!!  I will grieve, I scream, I will cry, I will laugh, but most of all I will pray.  I will never stop praying!

Isiah 58:11 The LORD will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail.

Settling in with KFS . . . or not so much

Its settling in that Thomas has Klippel-Feil Syndrome. Doing more research, finding support groups, message boards and talking with our orthopedic surgeon with additional questions.  We were relieved that there are no apparent issues at this time, but the reality of it all is that he does have KFS and will always have it.  Its rare, which makes it more difficult.  Some of the most important points that I have learned is that not only are you dealing with abnormal building blocks for his spine but they are also degenerative.  This means that even if he makes it through the complete development cycle and through puberty with no issues his bones will break down quicker than that of a normal persons bones.   Again, each case is highly individualized which makes it extremely difficult to compare one case to another but the general behavior of the bones seems to be quite consistent.

Another research study ~ Thomas has been invited to participate in another clinical research study.  This one is based out of Madison, Wisconsin.   I have received the consent form information and will be moving forward from there.  There primary focus is on the KFS and other spinal anomalies. 


His doctor would like x-rays at least every 6 months and a MRI once a year.  I think he is extremely competent in his field and trust him completely.  However, we are also looking into other options.  Obviously, finances are becoming more of an issue as these syndromes are brought into light.  We are going to move forward with the application for Katie Beckett, something I have personally had a hard time pushing through the emotions and the overwhelming paperwork required.  We are also looking into being referred to the Shriners hospital in regards to the KFS.  At the very least they will have him on monitoring and use them on an as needed basis when surgery may be needed.  I will keep you updated as we move through both of these processes.

The pediatrician and I will be setting up a meeting soon to review all of Thomas' medical case to see where we are and where we need to be.  As a mother, I don't want to make mountains out of mole hills.  If fact, right now I want to pull the covers over my head and pretend this all isn't our life!  But I want someone with the medical expertise to review it all and help me make informed decisions about my child's care.


I don't know how to do this.  I was hoping the good news would bring me some relief but that really hasn't happened as the reality sets in.  So, I just push through it the best that I can with the hopes that I will eventually get back up again, I will eventually get to a place where everything is okay.  For now, I have moments that I play with the boys and pretend we are normal.  Sometimes hours, rarely a day.  I am reading about ways to turn your brain off and handle stress, neither of which I am good at.  I try to not think about it and then I am consumed with it in a blink.  My stomach is starting to cause me problems and sleep is hard to come by for the most part, I feel like freshman year of college all over again.  I am trying to work through acceptance of this new syndrome and the impact that it is making now.  I don't want to even consider what this will mean for him in the future at this time.  Its too overwhelming and its not definite.

God is still sending me blessings even when I didn't think I needed them anymore.  I have come to realize that being a Type A personality and having Faith in our heavenly father seem to have its own set of complications.  Its a constant tug of war of who is in control, only I am the only one tugging at the stupid rope.  Its such a balance, because you need to loosen your grip of the rope and let it lead you.  I want to be proactive and do all that I can for Thomas, provide him the best medical care and prevention of anything that we can.  I don't want finances or doctors or anyone to prevent us from finding or doing something early to prevent further issues or complications down the road.  I realize it is impossible to detect or predict anything, but the medical field is always pushing for early intervention.  I am also not trying to miss my life, my kids growing up and enjoy them.  There are times that I stop everything, just drop it and am engrossed completely with my kids.  I fill their tanks up and they fill mine.  Its such an amazing feeling and it takes you away from the real world even if its just for fifteen minutes.

I have been playing with the blog more, adding sites that I visit frequently and organizations that seem to work with cases like Thomas and make it more personal.  When I first started this blog, I had no vision and wasn't sure people were going to be interested.  Now I am beginning to realize that I have quite a following for people have fallen in love with Thomas and are intrigued by his story.  I think it is also a therapy for me to share my story as a mom.  I am thinking I need more therapy at this point. HA!

More updates to come. . . just wanted to update you for now as to what was going on.

Our Meeting with the Orthopedic Surgeon Today

We are finally home!!  We have answers!!  I am so happy and relieved, I don't know what to do with myself.  I couldn't wait to come home and share the news with all of you.  We waited forever, but for the time and attention he takes with his patients is worth it.

He wanted to see us in person to explain Thomas' condition known as Klippel-Feil Syndrome as the MRI had definitely confirmed.  The most important thing is that their are no current complications associated with his condition at this time!!!  It was a relaxing appointment from the beginning in the manner in which he explained it all.  He started out by stating he had KFS with no harmful issues at this time.  Basically, his building blocks are different from anyone else.  We have rectangles that make up on vertebrae and he has triangles and wedges and pieces here and there and fused bones to put it in layman terms.  Every person with KFS is different so its difficult to compare one case to another.  The doctor said by the looks of Thomas he is doing extraordinarily well and sees no reason to do anything at this time.  He has the typical tilt and uneven shoulders, etc. but the most important thing is that his spinal cord or his cerebral cord is not compromised at this time.  WooHoo!!  Added bonus, there was no charge for today's appointment.

Now don't get me wrong, do I like that my son has this, absolutely not.  God just made him this way as the doctor said and he is beautiful and he is not hurting and he is not in pain.  We will have to watch and monitor him until he is fully developed with frequent x-rays, but I have full confidence in our orthopedic doctor.  If he were fully grown and developed right now we would be in the clear.  However, since he is built differently we aren't sure how he is going to grow and therefore need to watch him to make sure no complications arise as a result of his syndrome.  He did offer the advice that I create an information card to carry with him at all times that had his syndromes listed so that if he were to ever be in an accident, the emergency technicians would be informed quickly that his bone structure is originally different than that of a normal person.  I very much liked that idea and will be working on that in the coming week.

So, where are we?  Everything he has is congenital and is related someway. Thomas has Duane Syndrome that does effect his eyes movement, but he currently has good vision and is compensating for it, monitored by Pediatric Ophthalmologists.   He has Klippel-Feil Syndrome which he has Type III that accounts for cervical, thoracic, and lumbar spine malformations.  We are now in monitor mode with our Pediatric Orthopaedic Surgeon.  He has had hearing loss which is currently being treated with the placement of tubes, we will go through hearing tests every three months to catch the failure of the tubes as soon as possible.  He has hypotonia which we don't have a definite cause except for it is syndrome related and is being treated with physical therapy and will soon be adding some occupation therapy for sensory seeking development.  He has speech delay and has been referred for speech therapy.  We will be having surgery this year (now that we can get clearance) to check out the possible undeveloped or underdeveloped testicle.  We will complete the genetic testing to confirm any diagnosis and ensure we haven't overlooked anything else.  We will also move forward with providing information and DNA to Boston for their research.

I think we are in a very good place right now!!  I am now very excited about all that 2012 has to hold for the Jolleys!!  We will keep in touch with all of our doctors and do monitoring tests as needed.  We will provided Thomas with the recommended therapy to the best of our ability with time and finances.  We will pray always and continuously for the best possible outcome in all that there is and all that we do.  As always, I will keep you updated on anything that happens with Thomas.

My thought today before the appointment "I can do all things, through Christ who brings me strength" and I believe that now with all of my heart before the good news.  We will always be ready for any challenge that will come in our path.  Not because I can do this on my own and am strong enough, but because I have my Heavenly Father and all of his angels surrounding me through my family, friends and church family.  We love you all!!!

The Many Hands of God

Today was amazing!!  I trembled as I stood at the altar holding a very wiggly toddler with my 7 year old holding his hands at his mouth filled with anxiety, my 4 year old dancing around as if performing on a stage and my husband standing tall hands folded surround by his family.  As I looked out at the beautiful people I have come to know and love over the last four and a half years, I could feel nothing but pure love.  Love for me and each person in my family, not just Thomas.  My eyes would well with water, but a tear never formed for each time I thought it would instead I would smile.  I was smiling because of the words my pastor was saying as he asked the church to pray for us, to pray for Thomas, to pray for a miracle.  At the end of service, we were able to stand in the narthex and be hugged, blessed, and touched by so many that we knew and a couple we had not had the privilege of meeting yet. 

Today was the day to remember our baptism at our church and we had been through the service and had recited the words that were said at our baptism.  In our church, most are baptized as infants and don't actually recall the day they were baptized and the promises that were made.  It isn't until they are of age and go through confirmation that they make the choice themselves.  So each year, we have a service where we recall our own baptism and the  words and the meaning.  Thomas was baptized last summer when he was four months old.  It was then that we as parents promised to raise him in the church to know and learn about God, where the church promised to raise him, teach him, pray for him and love him as a child of God and a part of our church family.  We had come to the altar this morning at the suggestion of a dear friend of mine.  In light of my last blog post, she thought this would be a good opportunity to allow the church family the privileged to lay their hands on him and pray for him.  I had not heard of this before and went to my pastor.  He was delighted at the proposition and wanted us to attend both services this morning, so we did.

Walking down the aisle with my family and standing in front of all asking for them to pray for a miracle for my child is definitely one of the most spiritual things I have ever done in my life.  Next to being confirmed in the church, marrying my husband and baptizing all three of my sons.  It was humbling and moving in ways that its hard to describe.  Thomas is such a child of God as he is teaching his mother to do things she never thought she would do, feel things she never thought she would feel and ask for the things she never would have otherwise.  My walk with God has changed over the last couple of months that is hard to put into words.  It does not put me in a higher place or better than anyone else at all.  I use to pray for a better relationship with God, for better understanding, for him to walk with me everyday.  My prayers have changed now to let me serve you better Lord for all you have given me, let me show others how to serve you, heal those who are hurting and suffering that they may know your touch of love and comfort for only God can touch your heart in the times and places that no one else can.  It still amazes me that God chose me for this walk, he knows something that I don't.  All I know is I cannot do this without him, without my family, my friends and my church family.

I have been Methodists for most of my life, baptized as an infant, confirmed to the church.  I did go to the Baptist church for several years and then after marriage returned the Methodist church.  I had never heard of the laying on hands though and had to do my own research.  I found several references in the Bible:

1 Timothy 4:14 Do not neglect your gift, which was given you through a prophetic message when the body of elders laid their hands on you.

Acts 6:6 They presented these men to the apostles, who prayed and laid their hands on them.

Jesus could heal by the laying of hands, we cannot.  It is only through God that healing can be done.  The congregation this morning showed their willingness to openly pray and lay their hands on Thomas and pray for a miracle.  We underestimate God to often and his power to truly make miracles happen here on earth.  This earth is so cruel to us and cause us so much harm.  Tonight as I write this to you, I am calm.  I know the tests have been done and the results have been read and tomorrow will be the delivering of the message to me.  However, God is powerful and good.  No matter what happens tomorrow, he's got it.  He's got my back. God has my back.  Take comfort in knowing he has your back too. 

The appointment is tomorrow at 10:20am.  I will share the information as soon as I can.  

Here are some pictures from today's service taken by my dear friends of mine.

Pastor Darris with Thomas

 This picture is so powerful, I love these people so much! 
God was here today!

 

On my knees. . . will you join me?

Usually I post after results and after procedures and appointments with information on upcoming events.  But I really need your support right now.  Thomas' Pediatric Orthopedic Surgeon called me back today after my second call of demanding his opinion of the results of his MRI from last Wednesday.  I received a copy of the report for the fabulous Neurologists that we saw on Wednesday but as a non-medical professional it really provides me no information.  It does state he has Klippel-Feil Syndrome but then continues to say that after tedious attempts were made to describe the anomalies in detail level by level, they found it extremely difficult due to several limitations including young a small relatively crowded vertebral bodies and the inherent limitations of MRI at this age.  Okay, so you can't detail it our for the doctor which means he probably is going to look at it himself which is why it took all week for him to call me back. There office in general is quite busy and it usually takes three to four weeks for us to get an appointment even when its the doctor calling wanting to see us.

Anyway, they called me back this morning and we have an appointment Monday morning.  I will have to be honest with you, my mom's intuition made my stomach drop.  I appreciate having an appointment so soon, but it makes me quite concerned that they were able to get an appointment that soon.  Then the scheduling nurse ask me the question "Is Thomas okay?"  Yes, he is okay.  Of course, he is okay.  As I am on the phone with you he is assisting in unloading my dishwasher when that is not the task at hand.  Why would she ask me that?  What does she know that I don't?  Was she just being nice?  UGH!!!

I know you guys all come and read this because you have come to love my little man and love him so much.  Please pray for us that I can think positive and focus until Monday morning and that we will receive good news!!!  The best news would be that everything looks fine enough and that we will just continue to monitor him every six months. 

Thank you each and every one of you.  I had no idea what plan God had for me and my son and this blog, but I know it is all for good. 

That is what they call sleeping like a
baby! So hard and peaceful without a care in the
world to disturb their slumber.

Psalm 46:10 be still and know that I am God.

Can I get an Amen?!?!?

Today we had our long awaited appointment with the neurologists.  I honestly had no expectations going into today's appointment, but after waiting months I was very anxious to hear his opinion and any thoughts he might have on Thomas' case.  We got there with plenty of time for parking and paperwork and was greeted in the waiting room by his NP.  I had met her before at church and she helped us in getting in contact with this particular neurologists and is genuinely vested in Thomas.  It was so nice to see her and know she was excited we were there.  We went back and Thomas was having nothing to do with them.  He didn't want his blood pressure taken, weight or height.  The nurses and I did the best we could and moved on.  The neurologists came in after a short wait introduced himself and immediately began playing with Thomas.  I have become accustomed to this as the professional plays with him they are evaluating.  Its really a neat balance to watch.  I sit quietly and just observe, but in my head I am cheering him on!!

It didn't take long before he began sharing with me his thoughts on Thomas.  He told me how handsome he was and how well he seemed to be getting along for his age.  He felt that there weren't very many delays except the noted expressive speech delay.  He also noted that his responsive speech was wonderful. So, I clarified as we discussed his hearing loss that he had experienced, etc.  We discussed the various therapies Thomas has been recommended for and which ones would be most beneficial.  We also discussed in more depth about the genetic testing and the possibility that it may uncover no new information or usable information to us.  I agreed and understood his opinion, but also didn't want to necessarily leave any stone unturned on the off chance that the genetic testing showed us something we might have other wised missed. He agreed that our biggest issue is going to be watching his anomalies in his spine and will have to continue to work closely with our orthopedic surgeon.  

We discussed and reviewed the MRI results noting that there were no issues with his brain and that is anomalies in his spine were not currently pressing on the spinal cord anywhere which was good news.  So, from his standpoint all things were fine and intact.  He did get the confirmation of Klippel-Feil syndrome, which I already knew but I finally have it on paper and got to hear the correct way to pronounce it.  We briefly discussed the precautions to be taken with this condition.  We then discussed his overall health and well being.  He was so optimistic and impressed with Thomas calling him handsome and very active.  He then commented that there was no need for us to come to him again unless a problem should arise in the future.  It was wonderful to hear even though he was a fabulous doctor and probably provides amazing care to all of his patients.  It was very uplifting to hear a doctor talk so highly of Thomas and give more compliments and no surprises.  In fact, he stated that we have probably uncovered all of the issues that he has and that with his care we should be able to monitor him and catch any additional issues that may develop before they become a larger issue.

On another note, during our visit he congratulated me on this blog.  I am never sure how to respond when getting a compliment on this blog to be honest.  So, I smiled and said thank you.  Then he continued to tell me how I have done a wonderful job of researching my son's issues and using all of the available resources.  He also reviewed the lists of specialists for Thomas and said that they were all wonderful and that he wouldn't change any of them.  He confirmed that all of my research matched what he had done and he had even taken it one step further researching Hopkins and found no new information.  I was quite humbled by his compliments to me but felt a sense of relief that I had this medical professional affirming and complimenting me on my work for my son.  We ended the appointment with him asking me to continue to share any information with him that I find out on our journey in relation to Thomas out of per interest and that if we ever needed him in the future he would be happy to see Thomas. 

Today a smile was put on my face from this appointment and I didn't want anyone to pop my bubble!! I do realize that I still need to speak with our orthopedic surgeon to make sure he was okay with the way MRI looks in respect to the bones and if there is anything that needs to be done at this time.  My prayer is that there is nothing to be done at this time but to continue to monitor his spine.  IF this is the case then we can seriously step back and enjoy the ride a bit more than we have the last five months.  We will also get the all clear for his surgery. 

I realize there may always be something to be concerned with or something to monitor but it truly appears that my greatest fears have been put to rest. The chances of missing something very significant is very slim at this point.  I am breathing a little easier tonight and I am hoping as we continue through this journey that I will have more moments like this.  Thank you again for your prayers and support.  Thomas and I are so lucky to have you on our team!!

Thomas as 'Jesus' during this years Live Nativity at our
church this Christmas. He is definitely a beautiful child of God!!

Infinite possibilities are born of faith.

What a difference a year makes

Today has been a bit somber for me than it usually has been in the past.  I have gone through all of the motions in an attempt to drown out the pending thoughts that are lingering in my head and this awful feeling in the pit of my stomach I can't seem to shake.  I hung out with my friends who I have missed dearly in the last couple of weeks, I have spent time with family, I went to church this morning and heard a powerful message from God and ate the traditional New Year's Day meal.  Yet, I don't feel hope or excited.  It saddens me greatly to feel this way as I am usually so optimistic and ready to tackle any obstacles or challenges in my path.  I realize that right now, I am just not feeling it and that is okay.  I am insistent that this feeling will not stay but it probably has more to do with the fact that I am waiting on the results from the MRI's of Thomas and what this may mean for us in the coming year.  I am also overwhelmed with the therapies that have been recommended for Thomas including the involvement, the time and the financial means in which it will take.  (Tip: I shouldn't read reports that come in the mail during the holidays.)

Last year on this day, I had an eight month old little boy who had tubes put in his ears in the Fall and could now hear and was thriving and doing great with a few minor issues!  He was still breastfeeding and eating great!  He was a happy baby and we were happy to be a family of five and had settled into it pretty well.  My oldest was tackling Kindergarten with all smiles and was exceeding our every expectation, my middle child who was adamant about not going to preschool had finally found his rhythm and was making friends and learning new things leaps and bounds.  I started my new position solo at the church as wedding and funeral hostess and was nervous and excited about the possibilities it could bring for me as a new opportunity to serve the Lord and my church.  I was still working from home with my own company making some extra money and working for an awesome client.  I had overcome and began to face some of my own personal issues that had been hurting me in regards to feelings of rejection and abandonment.  I was hopeful last January and looking forward to another year of being The Jolleys!  I had no idea what all 2011 would bring to me and for that I am thankful.  I am thankful that it was slow going and that issues with one child preceded the other.  I am thankful for family and friends who were always there by our side no matter the challenge.  I am thankful for the women in my Bible Study who helped me go deeper and reach farther for my Heavenly Father for healing, strength and comfort.  I am thankful for people who have never left me.  I am thankful for my husband and all three of my beautiful sons and all that they have and all that they will bring into this world with their light.  This blog doesn't always highlight the older ones, but they are amazing in their own right.

While I walk a little more hesitantly right now and with apprehension, I am still walking.  I cannot help but think about all that I must face in the coming months, my prayer is that I will focus more on living in the moment and give more to our Heavenly Father.  It sounds so much easier to say than to actually do.  As a mother, I think it is honestly one of the most hardest things I have had to do.  I know I am not in control and I know that their is a master plan, but God gave him to me to take care of while under my care and I take that charge very seriously and want to provide him all that I am.  But I also know God didn't want me to loose sight of myself or others around me.  I cannot do all things myself and have slowly started working on leaning on others in these past few months.

My goal for this year is lean more on those around me who love us and are truly willing to help.  I may not always know how they can help, but I am learning to ask.  I also want to focus more on taking things day by day and enjoy these times with my boys while they still give mommy hugs and kisses and want to play with me.  I also want to be more brave in moving forward on things that may help our family no matter what labels or reports may say about my baby.  Its just a report, its just a label, it does not change who Thomas is. My new year's resolutions use to be like everyone else, to loose weight, better my relationship with God and those around me, take more time for myself, etc.  God has opened my eyes to a different view.  

We don't belong here and that is why we are not comfortable, we aren't suppose to be.  I heard this message and felt it with the passing of my Uncle.  Then I heard the message again today at church.  God has promises he has made to us and has never not fulfilled a promise to us.  We still get rainbows even after all these years and we are still blessed with the Holy Spirit!!  And when our time on earth is done, we will be in Heaven in the arms of our Father at last.  In the meantime, I will hold steadfast to the promise that God has made plans for us and they are good.  For all that God does is good.  I leave you with a wonderful verse and the verse that my heart is singing for the start of this new year:

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. Jeremiah 29:11

 

 Thomas and I wish each of our readers, followers, friends and family
a year full of Blessings and Spiritual Growth!

PS Thomas has sparkling cider. ;)