I can't help it. I ALWAYS get "reflective" this time of year which I think that any mom would say they do around their kids birthdays. For me, it brings many emotions and for some reason, this year, it seems to be a little more "there."
Sometimes I feel like I'm watching a video of Kira's first 24 hours of life. First it's the shock that she's really here, calling parents in the middle of the night, friends coming to visit, my parents coming, and just looking at her in shock that she was really ours. And when I get to midnight when I called Jason to tell him that Kira was going to special care but he didn't need to rush back......yeah right...I've never been so relieved to see him come through the door. I vividly remember being in special care and being terrified watching them trying to get an IV in her and only being able to find access on her head. I remember them saying they needed to watch her and get some X-rays. Sometime in there they actually convinced me to go back to my room and try to rest since I hadn't really slept in well over 24 hours. I remember being kind of a sleep and the the NICU dr coming in saying they had to put her on a ventilator and that a surgeon would be up to talk to us soon. I also remember REALLY waking up when I heard the word surgeon. Thank goodness we had a caring, wonderful surgeon who knew he was dealing with an exhausted, hormonal new mama. I remember him leaving the room and just looking at Jason, both of us in shock and in tears. Our 22 hours old baby girl was already on her way to the OR for a major surgery....that's pretty much all I could process at that moment. The next 9 days are a blur.....not being able to hold her was the hardest thing ever. I can't tell you how many times over those days I cried....it.was.alot.
This time of year always makes me stop and think about everything that Kira has been through. It's not a bad thing but it still blows.my.mind when I start to think about the last (almost) 10 years. Believe me, i KNOW that there are kids who have been through way, way more than.....it's just thinking about what she's been through and continues to have to deal with.
Sometimes I feel like I'm watching a video of Kira's first 24 hours of life. First it's the shock that she's really here, calling parents in the middle of the night, friends coming to visit, my parents coming, and just looking at her in shock that she was really ours. And when I get to midnight when I called Jason to tell him that Kira was going to special care but he didn't need to rush back......yeah right...I've never been so relieved to see him come through the door. I vividly remember being in special care and being terrified watching them trying to get an IV in her and only being able to find access on her head. I remember them saying they needed to watch her and get some X-rays. Sometime in there they actually convinced me to go back to my room and try to rest since I hadn't really slept in well over 24 hours. I remember being kind of a sleep and the the NICU dr coming in saying they had to put her on a ventilator and that a surgeon would be up to talk to us soon. I also remember REALLY waking up when I heard the word surgeon. Thank goodness we had a caring, wonderful surgeon who knew he was dealing with an exhausted, hormonal new mama. I remember him leaving the room and just looking at Jason, both of us in shock and in tears. Our 22 hours old baby girl was already on her way to the OR for a major surgery....that's pretty much all I could process at that moment. The next 9 days are a blur.....not being able to hold her was the hardest thing ever. I can't tell you how many times over those days I cried....it.was.alot.
This time of year always makes me stop and think about everything that Kira has been through. It's not a bad thing but it still blows.my.mind when I start to think about the last (almost) 10 years. Believe me, i KNOW that there are kids who have been through way, way more than.....it's just thinking about what she's been through and continues to have to deal with.
I think this year, more than other years, I've been thinking about everything because of where we're at right now.
This fall we were concerned about how tired Kira was on a daily basis. We tried to have her do all full days at school but we quickly figured out that she just couldn't do it. We went back to Thursday being a half-day and it seemed to help some. Kira was still BEGGING to go to bed by 6:30 every night and she would sleep until I woke her up at 7:15 the next morning. Jason and I got concerned enough after a few weeks that we started reaching out to doctors that we hadn't seen in a quite some time to see if they had any thoughts/suggestions/ideas. (I should add that we didn't stop seeing these doctors because of problems.....it was just because they were out of ideas and none of us felt like it was productive use of anyones time to continue coming to see them regularly.)
We were able to see Kira's neurologist in late October who wanted to try her on a new medication, Mestinon, that is typically only used in kids who have some form of a Congenital Myasthenia. He felt strongly that even though the test haven't shown that Kira has any form of this, it was worth trying since they are finding more and more forms all the time that aren't diagnosed the typical way. Well, long story short, we've seen incredible improvements with this medication for Kira. More energy is a big thing but she's had to colds that stayed just colds. (This is HUGE for Kira....HUGE!) Sooooo......
In the middle of trying this medication we also met with Kira's genetic doctor and talked with him about doing a new gene test. He felt strongly that we should proceed with this test but, of course, we had to get insurance approval to have it done. FINALLY, December 26th, we were able to get this test done....whole exome sequencing. Kira, Jason and I all had to have a blood draw done for this test so finding a time that we could all do, together, was a bit challenging but now it's done and we only have to wait 15-18 weeks to get the results. ;-)
Also, in the middle of all this stuff, Kira had neuropsych testing done. She had it done a couple of years ago but for several reasons, we decided that this was a good time to have it done again. We were very fortunate that we were able to have it done with the same person again. She is wonderful and Kira really does well with her. When the results came in, I have to admit that I wasn't terrible surprised with the results but as a Mom, my heart broke a little too.....Kira was diagnosed with high-functioning autism. I had my good cry...okay, cries but ultimately it comes back to something that that I've said many, many times.....
Kira is still Kira.
No diagnoses is ever going to change that.
She is still the same girl that she was before this diagnoses came around.
She still makes me laugh.
She still makes me crazy at times.
She's still Kira.
She's my Kira.
I guess what it comes down to for me right now is with everything that Kira has been through......she is doing REALLY good. She has an INCREDIBLE team at school this year. They have her best interest in mind with every decision they make. NONE of them were surprised by the autism diagnoses but agreed that this would open up more doors for help and support that will help her.
We've been through a lot of crap in the last 10 years. And, unfortunately, it likely won't end anytime soon. I still hope and pray that someday it will get easier for Kira to deal with the "medical crap" in her life. It's not easy and if I were her, I would be pretty ticked off too. :-)
Kira,
I don't know if you will ever read this blog or this but I want you to know how proud of you I am.
You work so hard to do so many things in your day. But I hear so often from your teachers and therapists that you don't give up. You have come so far in the last few years.
You are a sweet, loving, incredible girl.
I am so proud of who you are becoming.
You are a fighter!
You are going to do some great things in your life.
You are an inspiration to so many people. People have told me time and time again how you amaze them with who you are!
I cannot believe that you are 10 year old! No matter what you say, you will forever be my baby!
I love you Kira...I love you more than you will ever, ever know.
We were able to see Kira's neurologist in late October who wanted to try her on a new medication, Mestinon, that is typically only used in kids who have some form of a Congenital Myasthenia. He felt strongly that even though the test haven't shown that Kira has any form of this, it was worth trying since they are finding more and more forms all the time that aren't diagnosed the typical way. Well, long story short, we've seen incredible improvements with this medication for Kira. More energy is a big thing but she's had to colds that stayed just colds. (This is HUGE for Kira....HUGE!) Sooooo......
In the middle of trying this medication we also met with Kira's genetic doctor and talked with him about doing a new gene test. He felt strongly that we should proceed with this test but, of course, we had to get insurance approval to have it done. FINALLY, December 26th, we were able to get this test done....whole exome sequencing. Kira, Jason and I all had to have a blood draw done for this test so finding a time that we could all do, together, was a bit challenging but now it's done and we only have to wait 15-18 weeks to get the results. ;-)
Also, in the middle of all this stuff, Kira had neuropsych testing done. She had it done a couple of years ago but for several reasons, we decided that this was a good time to have it done again. We were very fortunate that we were able to have it done with the same person again. She is wonderful and Kira really does well with her. When the results came in, I have to admit that I wasn't terrible surprised with the results but as a Mom, my heart broke a little too.....Kira was diagnosed with high-functioning autism. I had my good cry...okay, cries but ultimately it comes back to something that that I've said many, many times.....
Kira is still Kira.
No diagnoses is ever going to change that.
She is still the same girl that she was before this diagnoses came around.
She still makes me laugh.
She still makes me crazy at times.
She's still Kira.
She's my Kira.
I guess what it comes down to for me right now is with everything that Kira has been through......she is doing REALLY good. She has an INCREDIBLE team at school this year. They have her best interest in mind with every decision they make. NONE of them were surprised by the autism diagnoses but agreed that this would open up more doors for help and support that will help her.
We've been through a lot of crap in the last 10 years. And, unfortunately, it likely won't end anytime soon. I still hope and pray that someday it will get easier for Kira to deal with the "medical crap" in her life. It's not easy and if I were her, I would be pretty ticked off too. :-)
Kira,
I don't know if you will ever read this blog or this but I want you to know how proud of you I am.
You work so hard to do so many things in your day. But I hear so often from your teachers and therapists that you don't give up. You have come so far in the last few years.
You are a sweet, loving, incredible girl.
I am so proud of who you are becoming.
You are a fighter!
You are going to do some great things in your life.
You are an inspiration to so many people. People have told me time and time again how you amaze them with who you are!
I cannot believe that you are 10 year old! No matter what you say, you will forever be my baby!
I love you Kira...I love you more than you will ever, ever know.
1 comment:
So sweet. TEN is a big year!
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