...............Tony met with Julie and the case worker yesterday. He actually got to read the eval writeup.........which was good!!! Brady on cognitive is at a 30 month level, which is exactly where he needs to be. And his fine motor skills are fine.
He lacks in the speech/language skills and in gross motor skills. This is where there is a delay.
They wrote a great plan to explain where Tony and I would like to see Brady at the end of this training. They will come to the house for sessions and even work with Mom and Kimberly, as they watch the boys daily, so that everyone is on the same page.
Tony was very impressed with everthing....................and we thank God, Brady has the ability to do this!!!!
Friday, July 31, 2009
Wednesday, July 29, 2009
Speech Evaluation...
...........yesterday Brady had an appointment for speech evaluation. This was scheduled before the word NF ever entered our lives......once again, amazing how God has everything planned out before we even know it! Tony and I have been concerned about Brady speech, or there lack of, and with his twin being SO talkative, we were not sure if he had a delay or if we were just comparing him too much to Hayden.
My thought as a mother was, this eval could go one of two ways, Brady get in there and say everything they ask and Tony & I look like stupid parents...........or he would go in there and say NOTHING, just do his adorable grin he does!!!
He did GREAT....so much better than I anticipated....we walked in together, Julie met us at the door and asked Brady if he wanted to go play, and he took off without me---YEAH!!!!! Back in the "playroom", the case worker, the speech therapist, her assistant and Julie, all worked with Brady having him do different things (play things to keep it fun)....and asked me a SERIES of questions........................after completing it all, they did state that they would write up the evaluation and meet with Tony on Thursday to review the plan.
The speech therapist did confirm he has a speech delay, and a couple of items of other delay, one being his size (which we already knew that), and the last being his "clumsiness"----lack of coordination. Overall, this would put him at the 18-20 month range. As for his ability, she stated he obviously has the mental capability to think and KNOW things....he just can't relay them thru speech...and this is completely "fixable" for lack of a better word. This is GREAT news..........we just need to work with him and catch him up.......he can certainly do the work and has the ability to do it!!!!!!!!!
My thought as a mother was, this eval could go one of two ways, Brady get in there and say everything they ask and Tony & I look like stupid parents...........or he would go in there and say NOTHING, just do his adorable grin he does!!!
He did GREAT....so much better than I anticipated....we walked in together, Julie met us at the door and asked Brady if he wanted to go play, and he took off without me---YEAH!!!!! Back in the "playroom", the case worker, the speech therapist, her assistant and Julie, all worked with Brady having him do different things (play things to keep it fun)....and asked me a SERIES of questions........................after completing it all, they did state that they would write up the evaluation and meet with Tony on Thursday to review the plan.
The speech therapist did confirm he has a speech delay, and a couple of items of other delay, one being his size (which we already knew that), and the last being his "clumsiness"----lack of coordination. Overall, this would put him at the 18-20 month range. As for his ability, she stated he obviously has the mental capability to think and KNOW things....he just can't relay them thru speech...and this is completely "fixable" for lack of a better word. This is GREAT news..........we just need to work with him and catch him up.......he can certainly do the work and has the ability to do it!!!!!!!!!
Wednesday, July 22, 2009
Dad daycare.......
...............Tony has the boys for 3 days this week all by himself, when I got home last night, he politely told me, he was now off the clock.........the boys were mine!!!! Hmmmmm, wonder what kind of day he had????!!!!
Results...
...............I received the call yesterday from the dermatologist, the biopsy was positive for Juvenile Xanthogranuloma.............does NOT show whether or not for sure that he has NF, I misunderstood that as I thought the biopsy was to confirm the NF. The geneticist will confirm the NF.........the dermatologist told me he felt sure that he would have NF. But his main reason for having the biopsy done, is that kids with JXGs (these spots go away over time--no other effects from these spots)----and NF have a slightly higher chance of developing leukemia.......he didn't want to tell me that earlier as he was giving me so much other news..................he said the it increases the chances by about 20%, HOWEVER, the strand of leukemia is a RARE form.......so the chances of Brady getting it, are slim but he wants everyone on the same page in order for all the drs to keep an eye out for any symptoms.
We have to take it one day at a time!!!!
We have to take it one day at a time!!!!
Tuesday, July 21, 2009
Reassurance...
...............I received a phone call yesterday that gives me peace!!! A gentleman with the Children's Tumor Foundation, which I referenced in a previous post, called the office as he had read my blog and wanted to assure my family what GREAT care we will receive at UAB and that Dr. Bruce Korf, the geneticist at UAB, wrote the book on NF (neurofibromatosis) and basically, is the doctor to see....seriously, go google him, he DID write the book on it, and the first line you will read on the google results, he is "nationally recognized leader in human genetics and internationally regarded as a leading authority in the neurodevelopmental disorder neurofibromatosis"....................WOW.........he is even leading clinical trials at UAB for NF....................talk about God putting us in the right place!!!!! If we are going to fight this battle, at least God has armed us with a great commander to lead the way......................HOPE!!!!!!!!!!!!!!
Monday, July 20, 2009
You've got mail.....
...........we received the letter in the mail on Saturday from UAB Genetics advising that Brady has an appointment with the Genetics Clinic on August 27 at 9:30.........should take about two hours and should just be discussion of Brady and medical history. We also have to take pics of his brothers with us. We'll see what they say................my prayer was that, we could get in quickly, so glad to know we are already scheduled.
Saturday, July 18, 2009
Marion...
......well Ma T (that my Mom) took Cooper and I to Marion with her last night as we are helping give a baby shower for friend of mine from my hometown of Marion. It's amazing how something such as this is a "vacation" for this mommy!!! As the twins are staying behind at home with their Dad for a little R&R time.....now let me correct you on this, this does not mean Rest and Relaxation, this means Railroad & Railway....as my boys have hit the age for obsession with Thomas the Train. The only problem is, I think their Dad, my wonderful husband, has become MORE obsessed than they.....as everytime the mood strikes (aka every other day) he comes home with more train stuff!!! And HE is the one that gets upset when the tracks are broken!!!! Gotta love them...all FOUR of my boys!!!!
Thursday, July 16, 2009
Dear God....
...........thank you for surrounding me with loving friends, family, co-workers that are also believers...............their prayers and words inspire me....................thank you for helping me keep my faith..............sincerely, your child Stephanie
Wednesday, July 15, 2009
Bad afternoon...
.......my husband told me not to look up any pictures or the video clips for Neurofibromatosis. That was like dangling a carrot in front of a rabbit.....he knows I don't like surprises. I'm now in my office trying to stop crying......as I can't do this at home...........I can't let Tony know how that I am worried. God help me be strong for my family.
The day after......
.........I am now ending my facebook blogging days and will be just using this blog which I will be setting to private. I will be using my blog not as a way to alert people of everything happening in our lives, but as a way to journal my thoughts in order to keep a happy face and my sanity.
The day after....this is the day after my world stopped turning...momentarily. As a mother of three healthy, beautiful boys, I have daily thanked God for them being healthy. That bubble I was living in, suddenly popped.
My husband has been telling me over and over that we need to take Brady to a dermatologist for his eczema, not just to the pediatrician. I have thought he was over reacting as we get the same response from everyone on the eczema, treat it with ointment and he will eventually outgrow it. Thursday night I was awakened during the night with a thought, that we must take him to the dermatologist...enough was enough, something more needed to be done.
Now I have to back myself up and remember that we used a pediatrician at Bham Pediatrics for the first two years of the twins lives.............for the time period that they go to the doctor the most, as from 2 forward they only go once a year. At the two year checkup, I switched doctors because I was pregnant with our third child and wanted a doctor that was closer to our home. Dr Sester stated at the boys appointment, that she noticed the spots (which I thought were birthmarks) on Brady needed to be watched to see if the multiplied or grew in size...that she was sure the other pediatrician had mentioned a genetic disease to us....to which I responded NO he never mentioned such a thing. She explained that drs will only see the children once a year from now on and that we parents are the best monitors for such things. No other thought was given to this.
Kimberly took Brady to the dermatologist yesterday morning at 9:50 with a list of questions I had regarding the eczema and the "spots". At 10:39, I got a call from Kimberly that the doctor wanted to talk to me. At this point, I am expecting an explanation of what the spots were and what treatment should be given. At this point, the doctor starts explaining to me his concern that Brady could have Neurofibromatosis. As the spots are called cafe' au lait spots and that he noticed a few other spots on his leg, known as JXG which is also a sympton of Neurofibromatosis. He wanted to do a biopsy of the JXG to send off to obtain confirmation of Neurofibromatosis. My mind raced, what did he just say, what does this mean, what about my baby Brady????? I immediately asked him to wait about 15 minutes in order to allow me to get there to the office before doing the biopsy...to which he agreed. I then fell apart.
I don't think I driven so fast and wreckless since before I was pregnant....with the twins....I kept thinking hold it together, it can't be that bad, you have to be the strong one............how can something be wrong with one of our kids? Why us? Then no, you can do this, God has never left you and He will not send you anything you cannot handle................He has gotten you so far and never given me more than I can handle. Remember, you are stronger than this...................just go in and find out what MUST be done. All I could think of, was Angie Smith, remember "Our God is the same God today, as He was yesterday".
After holding my son, while the dr injected numbing fluid and continuing to hold him perfectly still in order to do the biopsy, we discussed the issue at hand. Brady has more than 6 cafe au lait spots.....this is a symptom of Neurofibromatosis. He has a couple of JXGs, which are another symptom of Neurofibromatosis. Brady's language delay, can be a direct result of this. The biopsy will give us an answer and guide us to the next step. The next step will be to see a geneticist, the only one in the state of Alabama that deals with this disease. The blessing is, he is located here in Birmingham at UAB. Great---he's here local and we can have access to him easily if there is an emergency. Problem---with him being the only one, it is hard to get in to see him. So the dermatologist and pediatrician will make referrals once the biopsy is in... and we will wait. So, what exactly is Neurofibromatosis and what does this mean to Brady's life?
I know dr's hate hearing a mother ask, okay give it to me, what's the best case and the worst case we are talking about here.....being in the insurance biz, this could really open them up to a lawsuit. So with hesitation the dr explains, Neurofibromatosis is a genetic disease, but because Tony and I neither one have ANY symptoms, this appears to be spontaneous. (Which I have discovered happens 30-50% of the time!) Which is good, so that Cooper and Hayden should not have it. Neurofibromatosis is a chromosomal mutation that causes tumors to grow throughout the body, inside and out. Every case is a little different as some people have no symptoms and others have all symptoms. It can affect the bones, nerves, eyesight, hearing, causes learning disabilities, chronic pain, and can lead to cancer. We do not know what lies in store............we do feel that Brady has it, as another symptom is a larger head, and they tend to have a small frame. So far, Brady fits 3 of the symptoms. I don't know what to expect or what lies ahead.......................just taking it one day at a time and research as much as I can..................I have found a great website, www.ctf.org, Children's Tumor Foundation.
I just pray for now, that when we get the results, we can get into the geneticist as quickly as possible.
The day after....this is the day after my world stopped turning...momentarily. As a mother of three healthy, beautiful boys, I have daily thanked God for them being healthy. That bubble I was living in, suddenly popped.
My husband has been telling me over and over that we need to take Brady to a dermatologist for his eczema, not just to the pediatrician. I have thought he was over reacting as we get the same response from everyone on the eczema, treat it with ointment and he will eventually outgrow it. Thursday night I was awakened during the night with a thought, that we must take him to the dermatologist...enough was enough, something more needed to be done.
Now I have to back myself up and remember that we used a pediatrician at Bham Pediatrics for the first two years of the twins lives.............for the time period that they go to the doctor the most, as from 2 forward they only go once a year. At the two year checkup, I switched doctors because I was pregnant with our third child and wanted a doctor that was closer to our home. Dr Sester stated at the boys appointment, that she noticed the spots (which I thought were birthmarks) on Brady needed to be watched to see if the multiplied or grew in size...that she was sure the other pediatrician had mentioned a genetic disease to us....to which I responded NO he never mentioned such a thing. She explained that drs will only see the children once a year from now on and that we parents are the best monitors for such things. No other thought was given to this.
Kimberly took Brady to the dermatologist yesterday morning at 9:50 with a list of questions I had regarding the eczema and the "spots". At 10:39, I got a call from Kimberly that the doctor wanted to talk to me. At this point, I am expecting an explanation of what the spots were and what treatment should be given. At this point, the doctor starts explaining to me his concern that Brady could have Neurofibromatosis. As the spots are called cafe' au lait spots and that he noticed a few other spots on his leg, known as JXG which is also a sympton of Neurofibromatosis. He wanted to do a biopsy of the JXG to send off to obtain confirmation of Neurofibromatosis. My mind raced, what did he just say, what does this mean, what about my baby Brady????? I immediately asked him to wait about 15 minutes in order to allow me to get there to the office before doing the biopsy...to which he agreed. I then fell apart.
I don't think I driven so fast and wreckless since before I was pregnant....with the twins....I kept thinking hold it together, it can't be that bad, you have to be the strong one............how can something be wrong with one of our kids? Why us? Then no, you can do this, God has never left you and He will not send you anything you cannot handle................He has gotten you so far and never given me more than I can handle. Remember, you are stronger than this...................just go in and find out what MUST be done. All I could think of, was Angie Smith, remember "Our God is the same God today, as He was yesterday".
After holding my son, while the dr injected numbing fluid and continuing to hold him perfectly still in order to do the biopsy, we discussed the issue at hand. Brady has more than 6 cafe au lait spots.....this is a symptom of Neurofibromatosis. He has a couple of JXGs, which are another symptom of Neurofibromatosis. Brady's language delay, can be a direct result of this. The biopsy will give us an answer and guide us to the next step. The next step will be to see a geneticist, the only one in the state of Alabama that deals with this disease. The blessing is, he is located here in Birmingham at UAB. Great---he's here local and we can have access to him easily if there is an emergency. Problem---with him being the only one, it is hard to get in to see him. So the dermatologist and pediatrician will make referrals once the biopsy is in... and we will wait. So, what exactly is Neurofibromatosis and what does this mean to Brady's life?
I know dr's hate hearing a mother ask, okay give it to me, what's the best case and the worst case we are talking about here.....being in the insurance biz, this could really open them up to a lawsuit. So with hesitation the dr explains, Neurofibromatosis is a genetic disease, but because Tony and I neither one have ANY symptoms, this appears to be spontaneous. (Which I have discovered happens 30-50% of the time!) Which is good, so that Cooper and Hayden should not have it. Neurofibromatosis is a chromosomal mutation that causes tumors to grow throughout the body, inside and out. Every case is a little different as some people have no symptoms and others have all symptoms. It can affect the bones, nerves, eyesight, hearing, causes learning disabilities, chronic pain, and can lead to cancer. We do not know what lies in store............we do feel that Brady has it, as another symptom is a larger head, and they tend to have a small frame. So far, Brady fits 3 of the symptoms. I don't know what to expect or what lies ahead.......................just taking it one day at a time and research as much as I can..................I have found a great website, www.ctf.org, Children's Tumor Foundation.
I just pray for now, that when we get the results, we can get into the geneticist as quickly as possible.
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