September 23, 2013
Thank you for all the prayers and support for Madison today! We have good news, she does not need surgery now. Her nerves are not compressed and there is still room for fluid in her spinal canal at C3-C5 where her stenosis is. Neurosurgeon is very hopeful that she will be good for quite a while but as this is a degenerative disease we do have to watch it. She still has to continue follow up with neurology. Next stop pediatric rheumatology to see about underlying disease. Again thank you for your continued prayers and support
Katya and Mads
September 10, 2013
I think every parent's wish is for their child to go through life with nothing but smooth sailing. Of course everyone experiences some bumps, a broken arm or a broken heart, maybe a sliced thumb and a few stitches or a minor fender bender. You are never prepared or ready for something to be really "wrong". I know when Aden was diagnosed with Autism, I felt like I'd been hit with a ton of bricks. And eventually the helplessness comes. Feeling helpless is awful, feeling helpless to make things better for your child is probably the worst feeling in the world. When Aden was still pretty non-verbal his meltdowns came fast and were brutal, just because of being overwhelmed without being able to express himself. He would bang his face on the floor repeatedly not feeling any pain, until his nose would bleed. All I could ever do was the bear hug. I'm sure my Autism friends have done it themselves or seen it. You sit in the floor and cross your legs over theirs and hug with their arms at their sides. and you hug and hug, until the fight is gone and the anxiety is replaced by calm. I've done this at home, at school, at doctors, in parking lots, in stores. Sometimes silently crying with him, once with a bloody nose of my own and once with a fractured wrist after falling after him in a parking lot. When there is absolutely nothing you can do for your child but hold them as tight as you can and tell them it's ok when you aren't sure it is......you don't want to feel that. It tears your heart in two and stomps on the pieces. I am very lucky, Aden grew and learned and worked so hard. Now, people don't believe me when I tell them he has Autism.
Then today, my heart was trampled again. Madison is older, almost 12 yrs old, and you can't really keep too much from her. Plus she's a young girl and extremely nosy, like young girls are. If she wants to know something, she'll find a way to find out. So with her, honesty is the absolute best policy...always. She has known about today's appointment and she knew the basics about what the results from her MRI of her c-spine were. But she is still a kid and doesn't understand everything. The first thing the Neurologist said to me was "There's been a mix-up, her chart has a big note on it saying "See Neurosurgeon" but she's not seeing Neurosurgery today, just me. I'm not sure what happened."......and I wasn't surprised at all. Mistakes get made often like this so I was able to brush it off and go on with appt. Madison and her goofy self answered questions and made the Neurologist laugh. Her neurological exam was ok, not great but not horrible. She is showing left-sided weakness, which is the side she complains about most. She doesn't think her nerves in her spine are being compressed where the stenosis is (yet) but she isn't a neurosurgeon. She is treating her headaches and will monitor them and nystagmus but for now she agrees with the MRI brain results of no indication of Chiari, for now. And that is it. See you in 3 months. Mom, she needs to see a neurosurgeon. Yes, no crap, we thought we were seeing BOTH of you today. So the choice is mine, stay at UVA or go to Georgetown. Ok, I'll let you know after I speak with my neurosurgeon tomorrow, but we'll see you for follow-up in December. Now, we liked this Pediatric Neurologist very much. She was great. But as she said she can't address the spine issues, she is not a neurosurgeon. So we leave and Madison is still being her goofy self. Driving home I start talking about neurosurgeons and she looks at me like I'm crazy. She has misunderstood the WHOLE appt. and bursts into tears. What Madison thought was ok, I have headaches but not Chiari and I'm going to take medicine for them but I'm not seeing a neurosurgeon today because my spine is FINE. Do you know how hard it was for me to have to tell this 11 yr old girl all over again that her spine is not fine and that I cannot promise her that she won't need surgery now and definitely can't promise ever? She cried and cried, said no, I don't want something to be wrong with me, surgery will hurt, I'll be in a wheelchair, I'll never do sports again. My heart shattered, completely. Helpless. I can't make this go away, I can't make this better, I'M not a neurosurgeon. So what do you do when you don't have all the answers? When you don't want to make promises you don't know if you can keep because you can't keep seeing HER heart break?
You hold on to your child as tight as you can and tell them it's ok when you aren't sure it is. You tell her you are going to do everything YOU can to make it better for her. You tell her that nobody will touch her spine unless it is 100% necessary. You look her in the face and wipe the tears and tell her how strong she is. And when she looks at you and says not as strong as you, you grab her hand and say you're right........you're stronger.
Katya
August 14, 2013
Results are no evidence of Chiari Malformation:) She will still see a neurologist about nystagmus and since she is just starting adolescence, they'll repeat MRIs in a year or two. But as of right now she does not have it and that's what counts. They did find some issues with her c-spine (unrelated to Chiari). Waiting on doc to call back and tell us how to proceed with that.
Katya
August 12, 2013
Forget me and all my complications and medical problems. You see this beautiful girl? She is Madison (Mads), my daughter, my first born, my world. Please pray for her and if you don't pray, then send good thoughts her way. Her testing is Tuesday and it will absolutely break my heart in a million pieces if she has Chiari Malformation too. Pray hard, friends. Please
Katya
August 6, 2013
Secondly, my Mads had her appt to talk about her headaches she's had for quite a long time. Doctors said when it first started that it was allergies, allergy meds didn't help. Then they thought maybe she needs glasses and headaches are from squinting, got the glasses and still no difference. So doc did neurological examine and found a symptom we didn't even know about that is linked to Chiari. Doc also advised us that the genetic factor is higher than what we read about. she is being scheduled for c-spine and brain MRIs and being sent to see Pediatric Neurologist at UVA. I put on my everything will be fine when inside I'm crushed by guilt, if she has it she got it from me. We are still hoping that maybe just maybe it's nothing but it's hard when the odds are against you. My Mads is so calm about the whole thing, even after seeing what I've gone through. She hasn't cried or freaked out. She actually said "Hey, we'll be twins!". Love her and her strength.
Katya
Thank you for all the prayers and support for Madison today! We have good news, she does not need surgery now. Her nerves are not compressed and there is still room for fluid in her spinal canal at C3-C5 where her stenosis is. Neurosurgeon is very hopeful that she will be good for quite a while but as this is a degenerative disease we do have to watch it. She still has to continue follow up with neurology. Next stop pediatric rheumatology to see about underlying disease. Again thank you for your continued prayers and support
Katya and Mads
September 10, 2013
I think every parent's wish is for their child to go through life with nothing but smooth sailing. Of course everyone experiences some bumps, a broken arm or a broken heart, maybe a sliced thumb and a few stitches or a minor fender bender. You are never prepared or ready for something to be really "wrong". I know when Aden was diagnosed with Autism, I felt like I'd been hit with a ton of bricks. And eventually the helplessness comes. Feeling helpless is awful, feeling helpless to make things better for your child is probably the worst feeling in the world. When Aden was still pretty non-verbal his meltdowns came fast and were brutal, just because of being overwhelmed without being able to express himself. He would bang his face on the floor repeatedly not feeling any pain, until his nose would bleed. All I could ever do was the bear hug. I'm sure my Autism friends have done it themselves or seen it. You sit in the floor and cross your legs over theirs and hug with their arms at their sides. and you hug and hug, until the fight is gone and the anxiety is replaced by calm. I've done this at home, at school, at doctors, in parking lots, in stores. Sometimes silently crying with him, once with a bloody nose of my own and once with a fractured wrist after falling after him in a parking lot. When there is absolutely nothing you can do for your child but hold them as tight as you can and tell them it's ok when you aren't sure it is......you don't want to feel that. It tears your heart in two and stomps on the pieces. I am very lucky, Aden grew and learned and worked so hard. Now, people don't believe me when I tell them he has Autism.
Then today, my heart was trampled again. Madison is older, almost 12 yrs old, and you can't really keep too much from her. Plus she's a young girl and extremely nosy, like young girls are. If she wants to know something, she'll find a way to find out. So with her, honesty is the absolute best policy...always. She has known about today's appointment and she knew the basics about what the results from her MRI of her c-spine were. But she is still a kid and doesn't understand everything. The first thing the Neurologist said to me was "There's been a mix-up, her chart has a big note on it saying "See Neurosurgeon" but she's not seeing Neurosurgery today, just me. I'm not sure what happened."......and I wasn't surprised at all. Mistakes get made often like this so I was able to brush it off and go on with appt. Madison and her goofy self answered questions and made the Neurologist laugh. Her neurological exam was ok, not great but not horrible. She is showing left-sided weakness, which is the side she complains about most. She doesn't think her nerves in her spine are being compressed where the stenosis is (yet) but she isn't a neurosurgeon. She is treating her headaches and will monitor them and nystagmus but for now she agrees with the MRI brain results of no indication of Chiari, for now. And that is it. See you in 3 months. Mom, she needs to see a neurosurgeon. Yes, no crap, we thought we were seeing BOTH of you today. So the choice is mine, stay at UVA or go to Georgetown. Ok, I'll let you know after I speak with my neurosurgeon tomorrow, but we'll see you for follow-up in December. Now, we liked this Pediatric Neurologist very much. She was great. But as she said she can't address the spine issues, she is not a neurosurgeon. So we leave and Madison is still being her goofy self. Driving home I start talking about neurosurgeons and she looks at me like I'm crazy. She has misunderstood the WHOLE appt. and bursts into tears. What Madison thought was ok, I have headaches but not Chiari and I'm going to take medicine for them but I'm not seeing a neurosurgeon today because my spine is FINE. Do you know how hard it was for me to have to tell this 11 yr old girl all over again that her spine is not fine and that I cannot promise her that she won't need surgery now and definitely can't promise ever? She cried and cried, said no, I don't want something to be wrong with me, surgery will hurt, I'll be in a wheelchair, I'll never do sports again. My heart shattered, completely. Helpless. I can't make this go away, I can't make this better, I'M not a neurosurgeon. So what do you do when you don't have all the answers? When you don't want to make promises you don't know if you can keep because you can't keep seeing HER heart break?
You hold on to your child as tight as you can and tell them it's ok when you aren't sure it is. You tell her you are going to do everything YOU can to make it better for her. You tell her that nobody will touch her spine unless it is 100% necessary. You look her in the face and wipe the tears and tell her how strong she is. And when she looks at you and says not as strong as you, you grab her hand and say you're right........you're stronger.
Katya
August 14, 2013
Results are no evidence of Chiari Malformation:) She will still see a neurologist about nystagmus and since she is just starting adolescence, they'll repeat MRIs in a year or two. But as of right now she does not have it and that's what counts. They did find some issues with her c-spine (unrelated to Chiari). Waiting on doc to call back and tell us how to proceed with that.
Katya
August 12, 2013
Forget me and all my complications and medical problems. You see this beautiful girl? She is Madison (Mads), my daughter, my first born, my world. Please pray for her and if you don't pray, then send good thoughts her way. Her testing is Tuesday and it will absolutely break my heart in a million pieces if she has Chiari Malformation too. Pray hard, friends. Please
Katya
August 6, 2013
Secondly, my Mads had her appt to talk about her headaches she's had for quite a long time. Doctors said when it first started that it was allergies, allergy meds didn't help. Then they thought maybe she needs glasses and headaches are from squinting, got the glasses and still no difference. So doc did neurological examine and found a symptom we didn't even know about that is linked to Chiari. Doc also advised us that the genetic factor is higher than what we read about. she is being scheduled for c-spine and brain MRIs and being sent to see Pediatric Neurologist at UVA. I put on my everything will be fine when inside I'm crushed by guilt, if she has it she got it from me. We are still hoping that maybe just maybe it's nothing but it's hard when the odds are against you. My Mads is so calm about the whole thing, even after seeing what I've gone through. She hasn't cried or freaked out. She actually said "Hey, we'll be twins!". Love her and her strength.
Katya