Today, I had the pleasure of meeting a Genetics Specialists based out of Atlanta. She is highly sought after by many in different states for answers to the rare and unusual disorders and syndromes. I was highly impressed with the amount of detail, attention and time that she took with Thomas and me. We started out with her asking a few questions to clarify the doctor's notes she had received and the questionnaire I had completed. She had already done some research had an idea of what syndrome explains Thomas' issues. She immediately said that while she has an idea she doesn't want to spend the hour together explaining the syndrome and what it means until we had more conclusive information confirming the syndrome. She has found in past experience that spending the hour explaining the syndrome and detail and then finding out it was a misdiagnosis ends in a wasted hour and a parent spending time anxious about something their child doesn't even have. So instead, she mentioned the syndrome and then we moved forward with what tests we will be doing to get more conclusive results.
First off, there is no test for such syndrome. You basically look at the possible symptoms listed for that syndrome and then see how perfectly your child fits into it. If there is one issue that doesn't fit then it is better to keep looking rather than sticking that label to the child. Its hard to have a label removed once it has been diagnosed. We will be moving forward with genetic testing. Simply explained, they will take a sample of his blood to divide his cell up and look at a map of his chromosomes. From this they can determine if there are any missing or any duplicates. This can provide us some direction as to what was missing or altered during development, however, it is no definitive. For example, we can learn that he is missing number 5 but there is no conclusive research as to what number 5 is linked too. We can rule some things out and we can define some things, but the hope is it will help make a better picture of where we are and help define his syndrome.
She also agreed with the other steps that I have already initiated in his medical testing, such as the MRI on his brain. This is something she was going to recommend herself. Again, this is a test that could show us nothing or possibly show us something. It could show us some physical elements that did not complete during development and therefore defining some of his issues. But it could also show us that physically everything in his brain developed properly and has connected as it should. I know for a fact that Duane Syndrome is caused by the absence of cranial nerve VI, but I don't know if that will show up on the MRI. If anyone does know, please share that information with me. She also agrees that based on his last hearing test it may be to our benefit to push for another hearing test and keep a close eye on his levels of hearing. I will make those phone calls tomorrow. We also have a speech evaluation in correlation with his possible speech delay coming up on December 8th.
There was one new discovery today!! Can't have an appointment without someone finding something new that is abnormal with Baby Thomas. She noted that his toes curl. It was not a reflex to her touching his feet or anything of that sort. But just as she held them in her hand they had a nice curl to them. She said it was nothing to be alarmed about or contributed to his falling, but that it was a characteristic that just needed to be noted as part of his package.
One of the best parts about today's appointment is the explanation of the 'package'. I really liked her terminology here and will probably continue to use it as such. We discussed his hypotonia and how this would fit into the symptoms as this is not listed in any of the possible syndromes. She explained that most children with syndromes have certain characteristics that come with the package. One of those is the existence of hypotonia or low tone. That was comforting to know that there may be no further developmental issues neurologically but that it is more or less a common part of the package. As a mother, it is hard not to fear that one of the symptoms will lead to a bigger issue that will cause more challenges. She also explained that being small is another characteristic that is part of the package. She said to ignore the chart and make his own growth chart. As long as he is consistently growing and doing well on his own line then we have no reason for concern. Typically children who have these classifications of syndromes are just little. He is not to be compared to other children without syndromes and not even compared to his brothers. This was also comforting news to me so that I know what to look for and to accept that my little man will just stay little.
The second great part about today's appointment is that she explained to me that having a syndrome such as this means that he will not progressively get worse. He was born with these issues and they are what they are. A syndrome is a group of symptoms that collectively indicate or characterize a disease, psychological disorder or abnormal condition. Thomas falls in the abnormal condition category. I had never heard this before and as a mother it wonderful to hear that once we have defined all of his anomalies they will not change or become worse over time in and of themselves. Don't get me wrong though, I am not naive and realize that some of his current issues may alter, such as his spine or eyes, that may prove to make more challenges above and beyond his current challenges. But I still find comfort in knowing that once we can confidently and comfortably identify his syndrome, it will be something that we can use as our road map for his health care and therapies for now and in the future.
Baby steps are still steps taken. I feel like we are on the right path and feel better learning more about the package of Thomas. I definitely think we will have a diagnosis in the next couple of months. Will this change anything? In the right now moment, probably not. But it will be something that will be used in the medical world to explain his package and his challenges. It will be beneficial in trying to get financial help and getting him special considerations when necessary. Today was long and a lot of information was provided, but I think it was definitely a good step for Thomas.
Thank you for your continued prayers and support. They are truly are appreciated and felt. The past couple of months have taken there toll on me and I feel myself struggling with all the extra stress and emotions that arise daily. Please don't mistake me, I do not struggle with my faith as I know God has this all in his hands. God has sent Thomas as this beautiful and magical package that reaches far beyond our family and grows with each person he meets or reads his story. I feel this season of our journey is one of the hardest parts because its still new, fresh and unknown. The more we know the better prepared I can be to continue to be his best advocate until he is old enough to be his own. "And this strange season of pain will pass, when the healing hands of autumn cool me down" ~ Indigo Girls
Philippians 4:13-- "I can do all things through him who
strengthens me."
Tuesday, November 29, 2011
Monday, November 21, 2011
Its what he didn't say. . .
First I will have to say this past week was tough with so many people grieving close loved ones. While I am grateful that they are now in the arms of our heavenly Father, it also makes a person evaluate their own lives and how they are projecting God's light to all of those around them. With a heavy heart, we escaped to a cabin in the foothills of South Carolina. It was a fabulous time for all of us and a great escape to get away from everything technology. The boys were amazed there was no television. It was great!! Nothing brings you closer to God then being in an untouched State Park listening to my boys giggle and play. It was good and bad for Thomas from the view of Robert and I. It was good for him in a PT sense as there was lots of obstacles for him to step over and walk around with roots, rocks and tons of leaves making it difficult to see where to walk. It was a natural way of having him work on balance. The downside was a lot of falling. It hurts us to see him fall so much when just trying to walk around and be with us and with his brothers. I will have to say again, he is a trooper and doesn't cry much, instead he gets up brushes himself off and keeps going.
It was a short trip though, leaving Friday afternoon and coming back Sunday. As soon as we got back I began getting anxious about today's doctors appointment. Today was the Orthopedic doctor who had requested us to come in to discuss the new discovery of the fused vertebrae in his neck (cervical). We waited long enough that I felt sick to my stomach before going in, luckily my little man was sitting next to me holding my hand while watching the people come and go from the waiting room. We then went into the exam room where Thomas ran into the doctor's arms while the doctor nonchalantly rubbed his hand up and down his back checking his spine. No changes in his spine since August, good. After he reviewed the the x-ray again, he came in and began to draw for me what we have discovered. He basically explained that Thomas' C1 is tilted on C2, which is causing the head tilt. He then explained his concern that C3 and C4 are pulled away but that the spinal cord seems fine. The fusion of the vertebra begin at C4 and go down through about C6.
Here is a picture that I found that shows the way C1 sits on top of C2. Its clear to see that if C1 is tilted how that would cause Thomas' head to have the tilt that he has. He explained C1 being like a halo that is off centered and tilting to one side.
Here is a good x-ray of the cervical vertebrae from C1-C-7. As the doctor explained, he is not concerned about the fused vertebrae as they are what they are. He will just have a short neck or low hairline due to the fusion and will not be advised to play such things as football or baseball. Not sure he understands that those things are not an option anyway for his patient, but I kept pressing. He was illusive as to what he wanted to tell me until he can see the MRI to get a better picture of what is actually going on. He assured me that the spinal cord looked fine and that there was plenty of room for the nerves to grow. He called it a "stable abnormality"
In our conversation, I asked him if this meant that his limited range of motion was definite or something that could be altered. He basically said that his range of motion would not be increased. My heart sunk at his words knowing that Thomas' eyes need him to be able to compensate with his neck and not having that range of motion limits him even more. Also in the back of my mind is the fact that many people who have eye problems such as Duane Syndrome suffer from neck and back pains and issues even with full range of motion. At this point, the sadness set in on me and I could feel my body melting to his words. It amazes me how much I do like this doctor and he is so intelligent, yet when I leave I spend hours processing what he told me and end up doing further research to figure out what he didn't tell me. I do believe some doctors don't divulge everything in an effort to protect. I am not sure if that is his intention but it is certainly the feeling that I receive from him. In a nutshell, he wants to see the MRI before making any conclusive remarks. The MRI on Thomas' spine is scheduled for December 28th at 8am.
He did mention that after the MRI he would clear Thomas for his surgery. He really didn't feel comfortable doing so until he was able to get a clear image of the bone structure to advise the proper way for the intubation. He explained there are options to use a fiber optic method as opposed to extending the neck and tubing.
My concern is that this is what it is and we must accept it. If that is the case, Thomas will always have the head tilt which prevent good posture causing multiple issues throughout his body. It could also cause the other vertebrae in his back to move to compensate causing scoliosis which he is already prone too having the butterfly vertebrae in his thoracic part of his back. Not to mention the anomalies in his lumbar that could also shift. Know that if this doctor doesn't offer a conclusive explanation of what can or cannot be done, I will seek an alternate opinion. I will not be satisfied until I know for a fact that I have given Thomas the best opportunity to overcome these issues and prevent any of them from becoming worse or causing more pain in the future. I feel it is easier to fix what we can now while he is little before they become a bigger issue through growing and compensation. The body will find a way to compensate and sometimes those things are not reversible.
So today, I feel like someone kicked me in the stomach. Again my thoughts have had to shift, I thought the issue was fused vertebrae when in fact its more to it than that. I am not sure what the MRI could possibly change, but am willing to wait until he has seen what he wants to do to provide me with a definitive answer. I don't really have any other choice. Tonight I will process, read and try and file this information where it belongs so that I can focus back on my family. So I can get back to preparing for a great Thanksgiving meal and teaching our boys to count all of our blessings. But for tonight, I will lay down at the feet of my Lord and give all of my fears and frustrations to him and pray for the strength and renewed spirit for tomorrow.
Next Tuesday is our appointment with the Genetics Specialists. Again, I am not sure what they will be able to offer me, but I was once looking forward to it with hopes and now I think anxious is more of the feeling. Hopefully, this will change in the next week. Thank you again for reading, listening and praying, you mean so much to me.
It was a short trip though, leaving Friday afternoon and coming back Sunday. As soon as we got back I began getting anxious about today's doctors appointment. Today was the Orthopedic doctor who had requested us to come in to discuss the new discovery of the fused vertebrae in his neck (cervical). We waited long enough that I felt sick to my stomach before going in, luckily my little man was sitting next to me holding my hand while watching the people come and go from the waiting room. We then went into the exam room where Thomas ran into the doctor's arms while the doctor nonchalantly rubbed his hand up and down his back checking his spine. No changes in his spine since August, good. After he reviewed the the x-ray again, he came in and began to draw for me what we have discovered. He basically explained that Thomas' C1 is tilted on C2, which is causing the head tilt. He then explained his concern that C3 and C4 are pulled away but that the spinal cord seems fine. The fusion of the vertebra begin at C4 and go down through about C6.
Here is a picture that I found that shows the way C1 sits on top of C2. Its clear to see that if C1 is tilted how that would cause Thomas' head to have the tilt that he has. He explained C1 being like a halo that is off centered and tilting to one side.
Here is a good x-ray of the cervical vertebrae from C1-C-7. As the doctor explained, he is not concerned about the fused vertebrae as they are what they are. He will just have a short neck or low hairline due to the fusion and will not be advised to play such things as football or baseball. Not sure he understands that those things are not an option anyway for his patient, but I kept pressing. He was illusive as to what he wanted to tell me until he can see the MRI to get a better picture of what is actually going on. He assured me that the spinal cord looked fine and that there was plenty of room for the nerves to grow. He called it a "stable abnormality"
In our conversation, I asked him if this meant that his limited range of motion was definite or something that could be altered. He basically said that his range of motion would not be increased. My heart sunk at his words knowing that Thomas' eyes need him to be able to compensate with his neck and not having that range of motion limits him even more. Also in the back of my mind is the fact that many people who have eye problems such as Duane Syndrome suffer from neck and back pains and issues even with full range of motion. At this point, the sadness set in on me and I could feel my body melting to his words. It amazes me how much I do like this doctor and he is so intelligent, yet when I leave I spend hours processing what he told me and end up doing further research to figure out what he didn't tell me. I do believe some doctors don't divulge everything in an effort to protect. I am not sure if that is his intention but it is certainly the feeling that I receive from him. In a nutshell, he wants to see the MRI before making any conclusive remarks. The MRI on Thomas' spine is scheduled for December 28th at 8am.
He did mention that after the MRI he would clear Thomas for his surgery. He really didn't feel comfortable doing so until he was able to get a clear image of the bone structure to advise the proper way for the intubation. He explained there are options to use a fiber optic method as opposed to extending the neck and tubing.
My concern is that this is what it is and we must accept it. If that is the case, Thomas will always have the head tilt which prevent good posture causing multiple issues throughout his body. It could also cause the other vertebrae in his back to move to compensate causing scoliosis which he is already prone too having the butterfly vertebrae in his thoracic part of his back. Not to mention the anomalies in his lumbar that could also shift. Know that if this doctor doesn't offer a conclusive explanation of what can or cannot be done, I will seek an alternate opinion. I will not be satisfied until I know for a fact that I have given Thomas the best opportunity to overcome these issues and prevent any of them from becoming worse or causing more pain in the future. I feel it is easier to fix what we can now while he is little before they become a bigger issue through growing and compensation. The body will find a way to compensate and sometimes those things are not reversible.
So today, I feel like someone kicked me in the stomach. Again my thoughts have had to shift, I thought the issue was fused vertebrae when in fact its more to it than that. I am not sure what the MRI could possibly change, but am willing to wait until he has seen what he wants to do to provide me with a definitive answer. I don't really have any other choice. Tonight I will process, read and try and file this information where it belongs so that I can focus back on my family. So I can get back to preparing for a great Thanksgiving meal and teaching our boys to count all of our blessings. But for tonight, I will lay down at the feet of my Lord and give all of my fears and frustrations to him and pray for the strength and renewed spirit for tomorrow.
Next Tuesday is our appointment with the Genetics Specialists. Again, I am not sure what they will be able to offer me, but I was once looking forward to it with hopes and now I think anxious is more of the feeling. Hopefully, this will change in the next week. Thank you again for reading, listening and praying, you mean so much to me.
"Don't worry about tomorrow ~ God is already there"
Wednesday, November 16, 2011
While I Wait. . .
So many of you ask how Thomas is doing and tell me that you read my blog when the opportunity is present, so I thought I should give you all an update. I am grateful to each one of you who take the time to read my blogs. I really have no organization to them, but I sit and open my heart as the words flow to the page. I suppose there are no rules in blogging as to how long, how often, etc. I am just following my heart and your lead as our support system. Thank you, you mean a lot to me.
Thomas is fine as he really doesn't know that there is anything wrong with him, so he is running and playing and trying to keep up with his older brothers the best he can. We are still going to physical therapy about every two weeks and we are trying to work on his strength and balance through some exercises. He got his first bad boo boo under his eye falling in therapy, but its practically all healed now. Its tough to watch him fall so often as a mom. We even try to make it a fun game where when he falls we laugh or make a funny noise. Most of the time he can catch himself pretty good so he doesn't get hurt, other times he is too close to an object and hits it. You will often see bruises especially on his face and forehead area. The great thing about kids is they are so resilient and heal so quickly. Sometimes it makes me feel bad though especially when we are out and about and he attracts someone's attention and they ask what he did. We had lunch today and this lovely lady took a liking to Thomas and just talked with him and smiled and then asked about his head. I just lightly explained he falls a lot and she replied that she was sure he would grow out of it. Sweet to say. . . but not sure that is the case. Nothing about Thomas is something that you can grow out of unfortunately, it is what it is.
So, while I wait for the appointments to come up which is very difficult to do there still isn't a day that goes by that I am not doing something related to Thomas and his health care. Calls from doctors, PAs, insurance, etc. I was relating to another mom tonight who deals with similar circumstances and it really is taxing on someone how much it takes to make all of this happen. The calls come at the craziest times too. Friday night I was working a wedding at the church, running back and forth between the kitchen, the Bride, the sanctuary and going down the hall my phone rings. It is the nurse calling to talk to be about having the MRI order for Thomas' brain being sent to Egleston and that they should be calling me next week. Okay thank you and back to work. Its not until later when I get to sit down that it sinks in that I had a phone call about the appointment to put my baby to sleep so that they can get a detailed picture of what is going on inside my babies brain. The potential to find things that didn't develop correctly or aren't right. I quickly have to drum up my inner voice to calm the anxiety and remember who is in charge. All will be fine and we will tackle anything we need too. God will give me what I need when I need it and I am good with that.
I have been searching on the Internet for others who have children like Thomas in some manner. Its something that I do when I don't feel like I am doing anything proactive. My findings this week were fabulous!! I was able to find another mom who has a son with DS and hearing issues. She was able to tell me that at age 9 he is a happy boy and is enjoying his life to its fullest! I also found a 20 year old girl who suffers with similar issues as Thomas and she too was able to share with how fulfilling her life is and how she had struggles throughout her life but nothing that she couldn't overcome. I know Thomas is going to have a great life and that these obstacles set before us are not something we won't be able to overcome and he will never know anything different. But finding others who walk the same path as you gives you more hope and assurance that what I am doing is the right thing and the choices I am making are going to benefit him in the long run. As humans we just like to have that connection for the other person to listen and relate.
Monday we have an appointment with the Orthopedic surgeon. I am very curious to ask him what he thinks of the neck fusion and what does he think it means in relation to his other anomalies if anything and what does he expect to see on the MRI that is scheduled for December 28th of his spine. So, I am ready to take this one on.
In the meantime, we are going to get away for the weekend. We are headed to a cabin on the lake in South Carolina for some good family time with the outdoors. I think it will be a good time for us to just be a family and let our spirits renew and come back prepared for Thanksgiving. Such a wonderful time of year to stop and reflect on those things that we are so grateful for. Never doubt that I count my blessings daily and that I now among many things that Thomas is a blessing not only to us but to all that get to know him.
In closing I have to mention that God took a childhood friend of mine home this week after her long battle with Cancer. She was my age with three young children and a wonderful husband. It weighs heavily on my heart for her family to no longer have that light in their lives and I still have the opportunity to allow my light to shine for my family, friends and all of those who are around me. It is my prayer that God will help me everyday to be the best mother, wife, daughter, friend, granddaughter, neighbor and that in all I do let His will be done.
Proverbs 3:6 "in all your ways acknowledge him, and he will make your paths straight."
Philippians 4:6 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."
Thomas is fine as he really doesn't know that there is anything wrong with him, so he is running and playing and trying to keep up with his older brothers the best he can. We are still going to physical therapy about every two weeks and we are trying to work on his strength and balance through some exercises. He got his first bad boo boo under his eye falling in therapy, but its practically all healed now. Its tough to watch him fall so often as a mom. We even try to make it a fun game where when he falls we laugh or make a funny noise. Most of the time he can catch himself pretty good so he doesn't get hurt, other times he is too close to an object and hits it. You will often see bruises especially on his face and forehead area. The great thing about kids is they are so resilient and heal so quickly. Sometimes it makes me feel bad though especially when we are out and about and he attracts someone's attention and they ask what he did. We had lunch today and this lovely lady took a liking to Thomas and just talked with him and smiled and then asked about his head. I just lightly explained he falls a lot and she replied that she was sure he would grow out of it. Sweet to say. . . but not sure that is the case. Nothing about Thomas is something that you can grow out of unfortunately, it is what it is.
So, while I wait for the appointments to come up which is very difficult to do there still isn't a day that goes by that I am not doing something related to Thomas and his health care. Calls from doctors, PAs, insurance, etc. I was relating to another mom tonight who deals with similar circumstances and it really is taxing on someone how much it takes to make all of this happen. The calls come at the craziest times too. Friday night I was working a wedding at the church, running back and forth between the kitchen, the Bride, the sanctuary and going down the hall my phone rings. It is the nurse calling to talk to be about having the MRI order for Thomas' brain being sent to Egleston and that they should be calling me next week. Okay thank you and back to work. Its not until later when I get to sit down that it sinks in that I had a phone call about the appointment to put my baby to sleep so that they can get a detailed picture of what is going on inside my babies brain. The potential to find things that didn't develop correctly or aren't right. I quickly have to drum up my inner voice to calm the anxiety and remember who is in charge. All will be fine and we will tackle anything we need too. God will give me what I need when I need it and I am good with that.
I have been searching on the Internet for others who have children like Thomas in some manner. Its something that I do when I don't feel like I am doing anything proactive. My findings this week were fabulous!! I was able to find another mom who has a son with DS and hearing issues. She was able to tell me that at age 9 he is a happy boy and is enjoying his life to its fullest! I also found a 20 year old girl who suffers with similar issues as Thomas and she too was able to share with how fulfilling her life is and how she had struggles throughout her life but nothing that she couldn't overcome. I know Thomas is going to have a great life and that these obstacles set before us are not something we won't be able to overcome and he will never know anything different. But finding others who walk the same path as you gives you more hope and assurance that what I am doing is the right thing and the choices I am making are going to benefit him in the long run. As humans we just like to have that connection for the other person to listen and relate.
Monday we have an appointment with the Orthopedic surgeon. I am very curious to ask him what he thinks of the neck fusion and what does he think it means in relation to his other anomalies if anything and what does he expect to see on the MRI that is scheduled for December 28th of his spine. So, I am ready to take this one on.
In the meantime, we are going to get away for the weekend. We are headed to a cabin on the lake in South Carolina for some good family time with the outdoors. I think it will be a good time for us to just be a family and let our spirits renew and come back prepared for Thanksgiving. Such a wonderful time of year to stop and reflect on those things that we are so grateful for. Never doubt that I count my blessings daily and that I now among many things that Thomas is a blessing not only to us but to all that get to know him.
In closing I have to mention that God took a childhood friend of mine home this week after her long battle with Cancer. She was my age with three young children and a wonderful husband. It weighs heavily on my heart for her family to no longer have that light in their lives and I still have the opportunity to allow my light to shine for my family, friends and all of those who are around me. It is my prayer that God will help me everyday to be the best mother, wife, daughter, friend, granddaughter, neighbor and that in all I do let His will be done.
Proverbs 3:6 "in all your ways acknowledge him, and he will make your paths straight."
Philippians 4:6 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."
Wednesday, November 9, 2011
18 Month Check Up
For most people a check up is routine, you go in you check off where your child is and wait for the shots to go home. The highlight is the new weight and height of your bundle of joy. I have learned to cringe and be quite anxious at these appointments as usually there are unexpected findings at these appointments. However, I think over the past months we have discovered almost everything there is or at least on the right path. Today's appointment wasn't all that bad. I definitely think Thomas has become quite fearful of nurses and doctors not knowing what is going on. I try to talk to him as much as I can but the fear is quite real to him. He screamed the entire time they tried to weigh him and measure him. Its quite heartbreaking for him to fear such a simple non evasive tasks.
Our goal was to hit 20 lbs in three months, which we did with 2 ounces extra. He has also grown in length to 30.2 inches and his head is at 18 inches. He is still wearing 12 month clothes but I have noticed in recent weeks that on his tip toes he is reaching more things on the edge of the counter and is reaching door knobs. She does want us back in three months for a weight and height check since technically he isn't due back for 6 months. She would also like me to give him Carnation in his milk twice a day to keep his caloric intake up. I will do my best with this one, he drinks what he wants when he wants too.
The pediatrician and I reviewed every doctor and upcoming appointments to make sure she and I had the same plan. She too was quite excited with my connection at the neurology department at Emory and was thankful that they were able to work with us. At this point we are doing physical therapy every two to three weeks to improve some of his fine motor skills and just avoid the neck area at this time. She is putting in for a Speech therapy evaluation. She asked if I wanted to go through private with Children's or through Babies Can't Wait. I told her that Babies Can't Wait had released him from the program. She was baffled with all of his issues that he would be released from the state program and suggested that we might reapply. I told her for now let's go through Children's as I trust them that they will give a thorough and complete evaluation and appear to be far more competent than who I previously worked with through Babies Can't Wait. From a financial standpoint Babies Can't Wait makes more sense, but at least up front I want quality care for my son.
This led to another discussion about the Katie Beckett Waiver through Georgia. I have been going back and forth with this thing trying to figure out if its worth it, should I apply now or wait until after we see more specialists, etc. My pediatrician put my mind at ease and said based on his circumstance he has a good chance and that she fills those things out all the time. Just her saying that made me feel better because I don't want to be making a mountain out of a mole hill but I also want to get help where help is available. We went into more detail about the form, the detailing of costs and his care plan. All of which were things I was concerned with before applying. She left it up to me as to if I wanted to start the process now or wait until after we see the neurologists.
So really nothing new overall except we will get him evaluated by a speech therapist. I will have to say that it is quite refreshing to have such good confidence in a pediatrician who was able to ask me questions and discuss the issues of my son with me from memory. When we first moved to the area I went through several pediatricians trying to find the right one when Tanner was an infant. Never doubt that everything happens for a reason. Looking back over the last couple of years, I can see many people, events and things that have prepared me for this moment in time and for that I am truly grateful.
I would like to share one last thought with you that I have been praying and meditating on for the last week or so. I am finding that its important for me to be on my knees constantly praying and talking with the Lord above to give me the strength that I need to do what it is that he wants me to do. There is a song that I keep hearing over and over again and I know it is because I am meant to hear it:
Here are the lyrics:
You must You must think I'm strong
To give me what I'm going through
Well, forgive me Forgive me if I'm wrong
But this looks like more than I can do On my own
I know I'm not strong enough to be everything that
I'm supposed to be I give up I'm not strong enough
Hands of mercy won't you cover me Lord right now I'm asking you to be Strong enough
Strong enough
For the both of us
Well, maybe Maybe that's the point
To reach the point of giving up
Cause when I'm finally Finally at rock bottom
Well, that's when I start looking up
And reaching out
I know I'm not strong enough to be Everything that I'm supposed to be I give up I'm not stong enoughHands of mercy won't you cover me
Lord right now I'm asking you to be Strong enough Strong enough
Cause I'm broken Down to nothing But I'm still holding on to the one thing
You are God and you are strong When I am weak
I can do all things Through Christ who gives me strength And I don't have to be Strong enough Strong enough
I can do all things Through Christ who gives me strength And I don't have to be Strong enough Strong enough
Oh, yeah
I know I'm not strong enough to be Everything that I'm supposed to be I give up I'm not stong enoughHands of mercy won't you cover me Lord right now I'm asking you to be Strong enough
Strong enough
Strong enough
Our goal was to hit 20 lbs in three months, which we did with 2 ounces extra. He has also grown in length to 30.2 inches and his head is at 18 inches. He is still wearing 12 month clothes but I have noticed in recent weeks that on his tip toes he is reaching more things on the edge of the counter and is reaching door knobs. She does want us back in three months for a weight and height check since technically he isn't due back for 6 months. She would also like me to give him Carnation in his milk twice a day to keep his caloric intake up. I will do my best with this one, he drinks what he wants when he wants too.
The pediatrician and I reviewed every doctor and upcoming appointments to make sure she and I had the same plan. She too was quite excited with my connection at the neurology department at Emory and was thankful that they were able to work with us. At this point we are doing physical therapy every two to three weeks to improve some of his fine motor skills and just avoid the neck area at this time. She is putting in for a Speech therapy evaluation. She asked if I wanted to go through private with Children's or through Babies Can't Wait. I told her that Babies Can't Wait had released him from the program. She was baffled with all of his issues that he would be released from the state program and suggested that we might reapply. I told her for now let's go through Children's as I trust them that they will give a thorough and complete evaluation and appear to be far more competent than who I previously worked with through Babies Can't Wait. From a financial standpoint Babies Can't Wait makes more sense, but at least up front I want quality care for my son.
This led to another discussion about the Katie Beckett Waiver through Georgia. I have been going back and forth with this thing trying to figure out if its worth it, should I apply now or wait until after we see more specialists, etc. My pediatrician put my mind at ease and said based on his circumstance he has a good chance and that she fills those things out all the time. Just her saying that made me feel better because I don't want to be making a mountain out of a mole hill but I also want to get help where help is available. We went into more detail about the form, the detailing of costs and his care plan. All of which were things I was concerned with before applying. She left it up to me as to if I wanted to start the process now or wait until after we see the neurologists.
So really nothing new overall except we will get him evaluated by a speech therapist. I will have to say that it is quite refreshing to have such good confidence in a pediatrician who was able to ask me questions and discuss the issues of my son with me from memory. When we first moved to the area I went through several pediatricians trying to find the right one when Tanner was an infant. Never doubt that everything happens for a reason. Looking back over the last couple of years, I can see many people, events and things that have prepared me for this moment in time and for that I am truly grateful.
I would like to share one last thought with you that I have been praying and meditating on for the last week or so. I am finding that its important for me to be on my knees constantly praying and talking with the Lord above to give me the strength that I need to do what it is that he wants me to do. There is a song that I keep hearing over and over again and I know it is because I am meant to hear it:
Here are the lyrics:
You must You must think I'm strong
To give me what I'm going through
Well, forgive me Forgive me if I'm wrong
But this looks like more than I can do On my own
I know I'm not strong enough to be everything that
I'm supposed to be I give up I'm not strong enough
Hands of mercy won't you cover me Lord right now I'm asking you to be Strong enough
Strong enough
For the both of us
Well, maybe Maybe that's the point
To reach the point of giving up
Cause when I'm finally Finally at rock bottom
Well, that's when I start looking up
And reaching out
I know I'm not strong enough to be Everything that I'm supposed to be I give up I'm not stong enoughHands of mercy won't you cover me
Lord right now I'm asking you to be Strong enough Strong enough
Cause I'm broken Down to nothing But I'm still holding on to the one thing
You are God and you are strong When I am weak
I can do all things Through Christ who gives me strength And I don't have to be Strong enough Strong enough
I can do all things Through Christ who gives me strength And I don't have to be Strong enough Strong enough
Oh, yeah
I know I'm not strong enough to be Everything that I'm supposed to be I give up I'm not stong enoughHands of mercy won't you cover me Lord right now I'm asking you to be Strong enough
Strong enough
Strong enough
Sunday, November 6, 2011
Hurry Up and Wait
Pretty much sums up where we are right now. I finally have everything scheduled that needs to be scheduled and now its a matter of waiting until we get to each appointment to see what each specialists thinks. We do have a regular 18 month check up on Wednesday. Although with Thomas there is usually a new surprise with even a regular check up. I really think we will be good on this one though and it will be just an overall health check which I think is just fine. He hasn't been drinking as much fluid as I would like, but not sure that is a huge issue at this time. More like a kid just being a kid and going through their strange spurts.
After that appointment we have the following:
Nov 21st - Orthopedic Surgeon ~ Not sure how productive this appointment will be except to maybe see what he is thinking about the neck fusion. But since the MRI isn't until later he will be talking to us strictly based on the X-ray.
Nov 29 - Genetics Specialists ~ I am anxious about this appointment. I have sent in the large amount of paperwork already to them and am working in the insurance paperwork. I have also requested medical records from everyone Thomas has seen for her to receive the copies prior to our appointment. I have a lot hope in her connecting the dots for us but also know that she is not the end all to everything. We still have other ways in which I feel we are moving forward for more information.
Dec 4 ~ Meet with the eye doctor to have his eyes checked and see if the DS has changed any since our last appointment.
Dec 28th ~ MRI on spine as requested by the Orthopedic Specialists. I am also hoping to get an additional order for his head for the same date if needed by the neurologists so that they only have to put him to sleep once and do the test for both.
Jan 4th ~ We have our first appointment with the new neurologists who came highly recommend for Thomas' specific case.
So, as you can see its a bit spread out for basically the next two months. I am grateful for that considering the holidays and the kids being out of school. Three boys in a small exam room makes for a very stressed out mommy. I will update you as we hit each of these appointments and possibly learn more information.
In the meantime, we are living each day enjoying all of the wonderful blessings that our Lord has given to us. We are all loving and growing as a family together! Thank you again for your love, support and especially your prayers we are so grateful for them all.
After that appointment we have the following:
Nov 21st - Orthopedic Surgeon ~ Not sure how productive this appointment will be except to maybe see what he is thinking about the neck fusion. But since the MRI isn't until later he will be talking to us strictly based on the X-ray.
Nov 29 - Genetics Specialists ~ I am anxious about this appointment. I have sent in the large amount of paperwork already to them and am working in the insurance paperwork. I have also requested medical records from everyone Thomas has seen for her to receive the copies prior to our appointment. I have a lot hope in her connecting the dots for us but also know that she is not the end all to everything. We still have other ways in which I feel we are moving forward for more information.
Dec 4 ~ Meet with the eye doctor to have his eyes checked and see if the DS has changed any since our last appointment.
Dec 28th ~ MRI on spine as requested by the Orthopedic Specialists. I am also hoping to get an additional order for his head for the same date if needed by the neurologists so that they only have to put him to sleep once and do the test for both.
Jan 4th ~ We have our first appointment with the new neurologists who came highly recommend for Thomas' specific case.
So, as you can see its a bit spread out for basically the next two months. I am grateful for that considering the holidays and the kids being out of school. Three boys in a small exam room makes for a very stressed out mommy. I will update you as we hit each of these appointments and possibly learn more information.
In the meantime, we are living each day enjoying all of the wonderful blessings that our Lord has given to us. We are all loving and growing as a family together! Thank you again for your love, support and especially your prayers we are so grateful for them all.
Tuesday, November 1, 2011
Highs and Lows
Well, first of all, Thomas was scheduled for surgery for this Thursday and I made all the arrangements to have everything covered. Our orthopedic doctor reviewed his file and would not clear him for surgery today. The anesthesiologists needed clearance from him since they would have to incubate and that requires them to pull the head back and extend the neck. The orthopedic was not comfortable with allowing this until he has had an opportunity to have a more intricate look at it himself. They are putting in an order for a MRI. So, until he has had a chance to look at things we will postpone Thomas' procedure to a later date. I will keep you informed as this continues to move forward. I am slightly disappointed as I have been preparing myself to get this done and move it past us, but am relieved that I have chosen doctors who are willing to take more precautionary measures with my son. I am very grateful for that.
I had come very encouraging information shared with me yesterday that just made me giddy. A church member of mine has a sister who is a PA for a neurologists at Emory. She had introduced me to her back in the Spring on Palm Sunday, but at that time I had no inclination as to how she could help me. Well, the other night my friend sent me a message letting me know her sister would be happy to speak with me and reminded me of her name. Oh my, her name was the same name that my pediatrician had spoken to me about. My heart leaped for joy!! It clicked immediately that her sister was the one I had been trying to reach for the last couple of months and the office was being a bear. So, out of love, she shared her personal cell phone with me.
I spoke with her yesterday and she was so sweet. She even mentioned to me that she had read my blog and was more familiar with the details of what I had been going through with Thomas. Then she recommended another neurologists that she believed would be a better fit. How awesome is that? Someone who is on the inside who can say this would be who he needs. He is more knowledgeable in the field of more complex cases and would be a better fit. She is going to work with her office to get me an appointment and was also going to discuss the case with him during her clinical with him that morning. I was so excited just at the possibilities and how this all came to be. I am so thankful that prayers are being answered even when I am not sure myself what I am praying for. I never thought I would get so much joy in finding the right specialists.
So, we have lots of appointments scheduled for this month and I will be sure to share with you any updates as we move through our journey.
On a side note, I did walk 60 miles and it was an amazing experience! I walked with some fabulous people. I will admit the first day was the hardest as I had just learned about Thomas' neck and was trying to process that information. So the first 20 miles were a pity walk for me and I questioned why I was there and why I wasn't home with my babies. About mile 13 my muscles began to lock up and I could barely pick up my legs, it was miserable. I did the 20 miles and back at camp, I blew up my mattress and put out my sleeping bag, and moped my way to dinner. Once I got the dinner line this very happy lady asked me how my day was and I immediately burst into tears. Looking back, its quite humorous, but I do feel sorry for her. I prayed that night a little hard than nights past for clarity and strength. The next morning I woke up with a rejuvenated spirit and knew why I was there and that I was doing something beyond myself. So, then I walked 40 miles for those who couldn't walk, for those who were battling cancer and couldn't leave it behind and for the survivors who were walking with us after going through hell. I learned the true meaning of "mind over matter". I proved to myself that I am a fighter and I can do it.
I will do this and I will be thankful for all of my blessings along the way. For as many issues and challenges that Thomas has I will fight for the best for him. He is a tough little man and he reminds me daily that he is still a happy, healthy 18 month old who plays in my toilet, empties my pantry and climbs on anything that little foot will get on.
I had come very encouraging information shared with me yesterday that just made me giddy. A church member of mine has a sister who is a PA for a neurologists at Emory. She had introduced me to her back in the Spring on Palm Sunday, but at that time I had no inclination as to how she could help me. Well, the other night my friend sent me a message letting me know her sister would be happy to speak with me and reminded me of her name. Oh my, her name was the same name that my pediatrician had spoken to me about. My heart leaped for joy!! It clicked immediately that her sister was the one I had been trying to reach for the last couple of months and the office was being a bear. So, out of love, she shared her personal cell phone with me.
I spoke with her yesterday and she was so sweet. She even mentioned to me that she had read my blog and was more familiar with the details of what I had been going through with Thomas. Then she recommended another neurologists that she believed would be a better fit. How awesome is that? Someone who is on the inside who can say this would be who he needs. He is more knowledgeable in the field of more complex cases and would be a better fit. She is going to work with her office to get me an appointment and was also going to discuss the case with him during her clinical with him that morning. I was so excited just at the possibilities and how this all came to be. I am so thankful that prayers are being answered even when I am not sure myself what I am praying for. I never thought I would get so much joy in finding the right specialists.
So, we have lots of appointments scheduled for this month and I will be sure to share with you any updates as we move through our journey.
On a side note, I did walk 60 miles and it was an amazing experience! I walked with some fabulous people. I will admit the first day was the hardest as I had just learned about Thomas' neck and was trying to process that information. So the first 20 miles were a pity walk for me and I questioned why I was there and why I wasn't home with my babies. About mile 13 my muscles began to lock up and I could barely pick up my legs, it was miserable. I did the 20 miles and back at camp, I blew up my mattress and put out my sleeping bag, and moped my way to dinner. Once I got the dinner line this very happy lady asked me how my day was and I immediately burst into tears. Looking back, its quite humorous, but I do feel sorry for her. I prayed that night a little hard than nights past for clarity and strength. The next morning I woke up with a rejuvenated spirit and knew why I was there and that I was doing something beyond myself. So, then I walked 40 miles for those who couldn't walk, for those who were battling cancer and couldn't leave it behind and for the survivors who were walking with us after going through hell. I learned the true meaning of "mind over matter". I proved to myself that I am a fighter and I can do it.
I will do this and I will be thankful for all of my blessings along the way. For as many issues and challenges that Thomas has I will fight for the best for him. He is a tough little man and he reminds me daily that he is still a happy, healthy 18 month old who plays in my toilet, empties my pantry and climbs on anything that little foot will get on.
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