Today we sent Kayla off to school as a first grader! Hard to believe. It was such a bittersweet time at the bus stop since all five of us were there. Last year her first day of school was so hectic b/c Sophie was still in the hospital and I was scrambling to be everywhere I was needed. I was there to see her off to kindergarten and then hopped right in the car to drive to Children's to be with Sophie. I didn't come home again until later in the week when Sophie came home. It was wonderful to send her off to school today under normal, happy circumstances and our complete family! Madelyn has two weeks until she starts her 2nd year of preschool. She's so excited to be in the 4 year old class, "the big kids" she calls it. Also hard to believe that in a year she'll be getting on the bus with Kayla to go to kindergarten herself! Time flies.
We just got back from another week in OBX...this time, just the five of us. It was a fun week of beach and pool. Sophie is being a typical one year old and in the throws of fighting naps and getting into everything she can. She is completely mobile and has her own style of scooting/crawling. And she's quick! We have upped her physical therapy to 2x/ month since she's mobile now and the phys therapist wants to see her have a crawling pattern where she alternates her arms and legs like babies typically do. With the low muscle tone in her hips she holds her right leg bent forward for stability and while it works for her now, it will delay her walking eventually if we don't get her muscles strengthened. I am looking forward to more focused time to work with her with the big girls getting back into the school routine. Also looking forward to getting back to my Thurs morning Bible study and our Music Class on Fridays. Summer was wonderful, but it's nice having a schedule again! And college football starts soon...and cooler weather. I love fall!!!
This fall will mark a big milestone for Sophie too. On Oct 22nd she will have been seizure free for ONE YEAR! Her surgery was such a blessing and it's hard to believe how far we've come. She is such a shining light in our lives and continues to bring us so much joy each day. Kayla will be playing soccer this fall and we look forward to seeing how she enjoys that. Madelyn continues to be the comedian in our family and is very secure in her roles as big sister and little sister. As we were walking home from the bus stop today she said "Sooooo Mommy, what are we going to do without Kayla today?" It already feels right having our school year routine back. Here's to a fun fall season!
Monday, August 22, 2011
Tuesday, June 28, 2011
11 months
Sophie is 11 months old today. It's hard to believe that in one month we will be celebrating her first birthday. In some ways this year seems to have flown by and at the same time dragged on. She is such joy in our lives. I have truly never seen such a content, happy baby. She is so good at entertaining herself and also loves to be played with. Kayla and Madelyn love to play with her and make her laugh. She wants sooooo bad to crawl and is making progress with rocking on her knees, but I think it will be awhile before she's mobile. Her physical therapist has us working to build muscle tone in her hips so she'll have the strength to move those legs and get where she wants to go! For now she sits happily, turns in a complete circle, and scoots where she wants to go. In some ways it is a blessing for me b/c as soon as she is mobile my life will change with having to chase her around!
We are spending this week at the Outer Banks with my family. My mom and stepdad rented a beautiful oceanfront house for all of us. It's wonderful being with everyone and the kids are having a great time, as are we. I remember last fall when my mom told me she was booking this trip and in the midst of Sophie's health issues I told her "There is no way we will be able to go. We won't be able to do things like that anymore." My mom insisted that we would be able to go, but I didn't believe her a all. I was foreseeing a future of constant doctors and ER visits as Sophie was having daily seizures that we couldn't get under control. It's amazing how God has led us through this past year. Sophie is doing fantastic and we would've never imagined that we'd be here at the beach just relaxing and having a great time when we were going through all of that last year. My mom was right though and it is a blessing to spend this week with my family.
Tonight I'll be making cornbread (a favorite of ours) to celebrate and Friday is a big deal for us too. That will be Sophie's last dose of Phenobarbital which is a seizure medicine she has been on every day of her life. We will have successfully weaned her off of two seizure medicines and if all continues well then we'll start weaning her off the last one on November. God is good!
"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." -James 1:17
We are spending this week at the Outer Banks with my family. My mom and stepdad rented a beautiful oceanfront house for all of us. It's wonderful being with everyone and the kids are having a great time, as are we. I remember last fall when my mom told me she was booking this trip and in the midst of Sophie's health issues I told her "There is no way we will be able to go. We won't be able to do things like that anymore." My mom insisted that we would be able to go, but I didn't believe her a all. I was foreseeing a future of constant doctors and ER visits as Sophie was having daily seizures that we couldn't get under control. It's amazing how God has led us through this past year. Sophie is doing fantastic and we would've never imagined that we'd be here at the beach just relaxing and having a great time when we were going through all of that last year. My mom was right though and it is a blessing to spend this week with my family.
Tonight I'll be making cornbread (a favorite of ours) to celebrate and Friday is a big deal for us too. That will be Sophie's last dose of Phenobarbital which is a seizure medicine she has been on every day of her life. We will have successfully weaned her off of two seizure medicines and if all continues well then we'll start weaning her off the last one on November. God is good!
"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." -James 1:17
Sunday, June 5, 2011
New Blog Name
I've been wanting to re-name my blog for awhile. It started out as a way for people to stay informed about Sophie's health and has served its purpose for that. In the past months as she has been doing so well I feel like it has moved toward being a way for us to update about our whole family. I struggled with what to re-name it and the other night it came to me. I was praying before going to sleep and the word "footprints" came to me. I thought of the "Footprints in the Sand" poem which has always been a favorite of mine. I feel like "Footprints of Faith" sums up our journey with Sophie in the past 10 months and our future as a family of five. We have become so secure in the past year that God has a plan for of our family and where we are headed. There is such comfort in that. It's like a weight lifted to not have worry about where I'm headed because He knows and has always known. I can relax and enjoy living knowing that He carries me through the good times and the bad times. His plan usually makes sense in retropect. And the parts that don't make sense will someday when we see Him face to face.
Footprints in the Sand
by Mary Stevenson
One night I had a dream--
I dreamed I was walking along the beach with the Lord
and across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints,
one belonged to me and the other to the Lord.
When the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
there was only one set of footprints.
I also noticed that it happened at the very lowest
and saddest times in my life.
This really bothered me and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
you would walk with me all the way,
but I have noticed that during the most troublesome times in my life
there is only one set of footprints.
"I don't understand why in times when I needed you most, you should leave me."
The Lord replied, "My precious, precious child, I love you and I would never, never leave you
during your times of trial and suffering.
"When you saw only one set of footprints, it was then that I carried you."
Footprints in the Sand
by Mary Stevenson
One night I had a dream--
I dreamed I was walking along the beach with the Lord
and across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints,
one belonged to me and the other to the Lord.
When the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
there was only one set of footprints.
I also noticed that it happened at the very lowest
and saddest times in my life.
This really bothered me and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
you would walk with me all the way,
but I have noticed that during the most troublesome times in my life
there is only one set of footprints.
"I don't understand why in times when I needed you most, you should leave me."
The Lord replied, "My precious, precious child, I love you and I would never, never leave you
during your times of trial and suffering.
"When you saw only one set of footprints, it was then that I carried you."
Friday, May 13, 2011
Tangled
Our house has been taken over by Rapunzel and all things “Tangled” lately! The girls and I went to see the newest Disney movie last fall and pre-ordered the DVD so it would arrive soon after its release at the end of March. It is such a cute movie and I love the soundtrack so much I don't even mind playing it for the girls in the car!
This blog post has been about a month in the works because in listening to one of the songs from the Tangled soundtrack I can't stop thinking about my life in the past year. April 15th was an emotional day for me because it was a year ago that day that we had our ultrasound and found out that Sophie had health problems. Yet, I look at her now and she is thriving...such a joy in our lives! And we've made it a year...a long year...and life is better than we ever imagined it would be. When I listen to the song “See The Light” some of the words capture exactly how I felt and now feel about my littlest girl. I spent so much of the past year feeling “tangled” and just not knowing how to process everything that was going on. Some days felt like madness and I struggled to find God and His plan in it all. Sophie is 9 months old now and I realized that I do “see the light” after going through a period of darkness. We live such a normal life with her that sometimes I forget what we went through in the beginning and that she could still face issues in the future. But, there is a constant peace that reminds me she is meant to be with us and that whatever we may face in the future she will be fine and we will be fine. I am so in love with this sweet little girl and it's hard to believe that she will turn ONE in less than three months!
Here is a link to the video and the lyrics to “See the Light”. While the words are intended for a love story between a boy and a girl, I think you will see how they remind me of Sophie and our journey so far. God has blessed us so much by placing her in our lives. She is truly a shining star!
SEE THE LIGHT (from the Tangled soundtrack)
All those years watching from the windows
All those years outside looking in
All that time never even knowing
Just how blind I've been
Now I'm here, blinking in the starlight
Now I'm here, suddenly I see
Standing here, it's crystal clear
I'm where I'm meant to be....
CHORUS
And at last I see the light
And it's like the fog has lifted
And at last I see the light
And it's like the sky is new
And it's warm and real and bright
And the world has somehow shifted
All at once everything looks different
Now that I see you.
All those days chasing down a daydream
All those years living in a blur
All that time never truly seeing
Things the way they were.
Now she's here shining in the starlight
Now she's here, suddenly I know
If she's here it's crystal clear
I'm where I'm meant to go....
Friday, March 25, 2011
It's Just Information
FINALLY...I have a chance to update. Life has been busy and the kids have all been sick. Since the beginning of March, Sophie has had RSV and two ear infections, the other two had strep back to back. I am off FB for Lent so that gives me much more free time. You know, as much as I can get with three kids!
Kayla turned SIX a couple weeks ago and had her first real sleepover with three friends. It is hard to believe how big she is. She is doing great in kindergarten and is starting to read really well too. She can read Hop on Pop to us and is so proud. She still prefers writing and drawing to reading, which pains me b/c I am such an avid reader, but she is also really good at drawing. I think she struggles with her place in the family lately, wanting to be a big girl, but also wishing she could be one of the little girls too. We got her a DS for her birthday so Mike is looking forward to introducing her to the wonderful world of video games. :)
Madelyn loves preschool and has acquired Kayla's Leapster lately and loves to play the Tinkerbell game. She can now write her name as well as most letters in the alphabet. This kid is too smart for just being 3 1/2. She amazes me more each day. She is your typical preschooler who melts down about things sometimes, but she is also very independent and entertains herself so well. She loves detailed things like puzzles. She tries so hard to keep up with Kayla, but also loves playing with Sophie.
Sophie is doing amazing! She is still seizure free and we've weaned her off one of her seizure medicines completely with no problems. She is still on the other two, as well as a heart med, and recently had to start on Zantac since we've determined she was having silent reflux. She was refusing to take her bottle off and on for weeks as well as having a chronic red throat, but no strep. Three days on Zantac and she was back to her normal self. We're hoping she can wean off of that at about 9 months. I could use less medicine in her life!!! Even with the RSV and ear infections she is such a trooper. She's been a happy baby through it all. Ever since weaning off of the one seizure medicine we have seen her personality just explode. She laughs so much, babbles, reaches for everything, fusses when we put her down...all the normal things that 7 month olds do! She is sitting well now and hardly falls over anymore. She still has some weakness in her left hand and arm, but we are continuing to work with a physical therapist through Early Intervention who comes once a month to our house. She gives me things to work on with her to help her stay on track milestone wise. So far she seems completely on track except for the left arm being a little behind. But for a baby who had brain surgery 4 months ago she wows everyone with how on track she is! Her new favorite thing to do is EAT. She struggled in the beginning with baby food, but after a couple weeks she got the hang of it and now eats more than I remember the other two eating at this age! She is a lot of fun and I enjoy her more and more each day. It's hard to believe she'll be 8 months old on Monday.
So I have some news about me. No, I'm not pregnant...we are DONE DONE DONE. Did I say DONE? Anyway, back in December I had blood drawn for genetic testing. I did mine and Mike was going to get around to doing his sometime after. Well, my test results came back questionable for Tuberous Sclerosis, so Sophie's neurologist advised that I have an MRI on my brain and a kidney ultrasound to look for tubers which would indicate that I carry the gene change that would make a clinical diagnosis. I had them done and while my kidney ultrasound came back fine, my MRI showed three tubers on my brain. Now, don't worry! This really doesn't make a difference for me since obviously I'm fine and living a normal, healthy life. What it means is that we now know that Sophie got this from me, and I could've got it from my mom or dad, it could've been passed down for generations or it could've started with me, who knows. I won't have to have any further testing unless I start having neurological issues, which since I haven't so far no one expects me too. What's interesting is that I had mild seizures as a child that I was medicated for and eventually went off the medicine and they never happened again. So this could be the explanation, or maybe not. So Mike no longer has to get tested since my results came back this way, but we do eventually have to get Kayla and Madelyn blood tested just so they'll know their status for the future. If you have TSC there is a 50% chance you can pass it on to a child so they need to be aware. And since they are healthy and developmentally normal, if one of them had it they would just have to have a kidney ultrasound every 5 years or so to look for tuber growth, but if they didn't have any by their 20s they would be clear of them...like I am.
It's been a whirlwind of information which I thought would devastate me. Really, it's been the biggest weight off my chest. I no longer have to think, "what if I have this" b/c I do and if we hadn't had Sophie I wouldn't even know. Having Kayla and Madelyn tested makes me nervous, but I'm glad that they will know their status with it and will never have to go through what we've just gone through with Sophie unprepared. The best part of these results is that the feeling of resentment that I've had toward Sophie since her birth, with all the stress she's brought into my life, is GONE. I feel like that sounds horrible that I've resented my baby b/c at the same time I love her so much, but it's been the hardest thing I've ever gone through and couldn't help but thinking "if only we hadn't had a 3rd" or "what would life be like if we'd had a baby without problems" but now that I know that she got this from me it's like I know it's not her "fault" not that it ever really was. I feel like this doesn't make sense, but it's how I've felt. Mike and I are secure in the fact that this information is just that...information. It really doesn't change anything. Sophie has TSC, I carry the gene for it but am not affected and we just move on from here. If anything it gives me living proof that you can have this condition and live a completely normal life! I'm living proof!!
Hope everyone is doing well. We are blessed to be in a place of peace with everything in our lives. God continues to lead us down our path together and we trust in His plan for us. We couldn't have made it through the past year without all of you. Our family and friends are the biggest blessing in our lives!
Kayla turned SIX a couple weeks ago and had her first real sleepover with three friends. It is hard to believe how big she is. She is doing great in kindergarten and is starting to read really well too. She can read Hop on Pop to us and is so proud. She still prefers writing and drawing to reading, which pains me b/c I am such an avid reader, but she is also really good at drawing. I think she struggles with her place in the family lately, wanting to be a big girl, but also wishing she could be one of the little girls too. We got her a DS for her birthday so Mike is looking forward to introducing her to the wonderful world of video games. :)
Madelyn loves preschool and has acquired Kayla's Leapster lately and loves to play the Tinkerbell game. She can now write her name as well as most letters in the alphabet. This kid is too smart for just being 3 1/2. She amazes me more each day. She is your typical preschooler who melts down about things sometimes, but she is also very independent and entertains herself so well. She loves detailed things like puzzles. She tries so hard to keep up with Kayla, but also loves playing with Sophie.
Sophie is doing amazing! She is still seizure free and we've weaned her off one of her seizure medicines completely with no problems. She is still on the other two, as well as a heart med, and recently had to start on Zantac since we've determined she was having silent reflux. She was refusing to take her bottle off and on for weeks as well as having a chronic red throat, but no strep. Three days on Zantac and she was back to her normal self. We're hoping she can wean off of that at about 9 months. I could use less medicine in her life!!! Even with the RSV and ear infections she is such a trooper. She's been a happy baby through it all. Ever since weaning off of the one seizure medicine we have seen her personality just explode. She laughs so much, babbles, reaches for everything, fusses when we put her down...all the normal things that 7 month olds do! She is sitting well now and hardly falls over anymore. She still has some weakness in her left hand and arm, but we are continuing to work with a physical therapist through Early Intervention who comes once a month to our house. She gives me things to work on with her to help her stay on track milestone wise. So far she seems completely on track except for the left arm being a little behind. But for a baby who had brain surgery 4 months ago she wows everyone with how on track she is! Her new favorite thing to do is EAT. She struggled in the beginning with baby food, but after a couple weeks she got the hang of it and now eats more than I remember the other two eating at this age! She is a lot of fun and I enjoy her more and more each day. It's hard to believe she'll be 8 months old on Monday.
So I have some news about me. No, I'm not pregnant...we are DONE DONE DONE. Did I say DONE? Anyway, back in December I had blood drawn for genetic testing. I did mine and Mike was going to get around to doing his sometime after. Well, my test results came back questionable for Tuberous Sclerosis, so Sophie's neurologist advised that I have an MRI on my brain and a kidney ultrasound to look for tubers which would indicate that I carry the gene change that would make a clinical diagnosis. I had them done and while my kidney ultrasound came back fine, my MRI showed three tubers on my brain. Now, don't worry! This really doesn't make a difference for me since obviously I'm fine and living a normal, healthy life. What it means is that we now know that Sophie got this from me, and I could've got it from my mom or dad, it could've been passed down for generations or it could've started with me, who knows. I won't have to have any further testing unless I start having neurological issues, which since I haven't so far no one expects me too. What's interesting is that I had mild seizures as a child that I was medicated for and eventually went off the medicine and they never happened again. So this could be the explanation, or maybe not. So Mike no longer has to get tested since my results came back this way, but we do eventually have to get Kayla and Madelyn blood tested just so they'll know their status for the future. If you have TSC there is a 50% chance you can pass it on to a child so they need to be aware. And since they are healthy and developmentally normal, if one of them had it they would just have to have a kidney ultrasound every 5 years or so to look for tuber growth, but if they didn't have any by their 20s they would be clear of them...like I am.
It's been a whirlwind of information which I thought would devastate me. Really, it's been the biggest weight off my chest. I no longer have to think, "what if I have this" b/c I do and if we hadn't had Sophie I wouldn't even know. Having Kayla and Madelyn tested makes me nervous, but I'm glad that they will know their status with it and will never have to go through what we've just gone through with Sophie unprepared. The best part of these results is that the feeling of resentment that I've had toward Sophie since her birth, with all the stress she's brought into my life, is GONE. I feel like that sounds horrible that I've resented my baby b/c at the same time I love her so much, but it's been the hardest thing I've ever gone through and couldn't help but thinking "if only we hadn't had a 3rd" or "what would life be like if we'd had a baby without problems" but now that I know that she got this from me it's like I know it's not her "fault" not that it ever really was. I feel like this doesn't make sense, but it's how I've felt. Mike and I are secure in the fact that this information is just that...information. It really doesn't change anything. Sophie has TSC, I carry the gene for it but am not affected and we just move on from here. If anything it gives me living proof that you can have this condition and live a completely normal life! I'm living proof!!
Hope everyone is doing well. We are blessed to be in a place of peace with everything in our lives. God continues to lead us down our path together and we trust in His plan for us. We couldn't have made it through the past year without all of you. Our family and friends are the biggest blessing in our lives!
Wednesday, January 5, 2011
Knocking on Wood
It's been awhile since I've updated and life has been great! Sophie is growing and changing every day. She is just over 5 months old now and such a blessing in our lives. She makes all kinds of noises, laughs (especially at Kayla), grabs for toys, and has started to roll over from her tummy to back. She's even napping better most days which is so nice for me! I feel like we have a good routine going that will only get better with time. She has been seizure-free since her surgery in October. Our Christmas season was extra special this year since life was finally calm and we got to spend a lot of time together as a family of five. Kayla and Madelyn adore Sophie and fight over who gets to play with her. They are both so sweet with her in their own ways.
Sophie's physical therapy is going well. We've met with her therapist twice now and she's guided us with ways to improve Sophie's head control...which is now right on track. We're working with her now to encourage rolling from tummy to back which she's getting the hang of this week. She had been rolling back to tummy before her surgery and still does every once in awhile. My girls have never been big rollers though! And of course we continue to encourage her to use her left hand which was somewhat weakened by the surgery. The therapist also noticed that she was keeping her left hand clenched in a fist, more like a newborn, and called it high muscle tone so we now have ways to stimulate her hand to open more and she's keeping it relaxed more each day. We hope that she'll have made enough progress with it that she won't have to be fitted for a hand splint, but even if she does we'll deal with it and do what's best for her! She's also started sitting in the Bumbo seat and loves looking around at what's going on.
I have struggled off and on with not letting all this get to me. Sometimes I get in a funk where I feel like this physical therapy is all on me and that if she doesn't achieve a goal it is my fault. I know it's not in my control and that we as a family are in this together and will do the best we can to help her progress. She's so on track milestone-wise that we feel very blessed, especially with all the reading on Tuberous Sclerosis we did when she was born. And really, she doesn't get that much physical therapy. It's a once a month meeting where we get tips and goals to work on for the coming month. The one thing that I keep working on is living day to day. I do the best I can each day with all three of my girls and when the day is over, I box it up, put it away and look to the next day. God is in control here and He has led us this far and will continue to lead us each day no matter what comes. He has brought us such joy and calm over the past several months and we are so thankful.
So yesterday I had an unexpected conversation with the nurse from Sophie's neurologist's office. She called because I have recently had blood drawn to send off for genetic testing (Mike will do this too) to rule out if one of us might have TS and just never have manifested any of the symptoms or problems. By the way, most TS cases are a spontaneous mutation, but it has happened that one of the parents of a child with TS has it too and just doesn't know. We get tested and if we are fine, then there is no reason to get Kayla or Madelyn tested, especially since they are so healthy and developmentally normal. Anyway, so the nurse calls just to get the date of my blood draw and then asks me how Sophie is doing. I tell her that she's doing great, we haven't seen any seizures and it's been wonderful living this calm life with her, not having to call the doctor all the time. She responds hesitantly, "Well knock on wood...seriously, find some wood and knock on it." I was taken aback. No one has ever responded that way to me and it surprised me because this nurse has an adult child with TS. Every person that has ever asked me about Sophie and how she's doing is thrilled and hopeful that she's doing so well. I tried to brush it off, but it really stuck with me all day yesterday. I kept thinking, "Am I naive for basking in the goodness of life right now? Does this nurse know something I don't? Should I be worried?" I prayed about it last night and after talking to Mike, my mom, and my best friend I feel a lot better today. I have come to the conclusion that what the nurse said was inappropriate. I have faith and hope that the future holds amazing things for Sophie and that each day is a gift. I refuse to KNOCK ON WOOD!!!!! I will continue to pray daily for Sophie and her progress and thank God for each blessing we receive. It's amazing how one person's negative comment can ruin your whole day. And make you doubt yourself. I would much rather have God on my side than a piece of wood. :)
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own. " -Matthew 6:34
Life continues to be good. We are coming up on half a year with our sweet Sophie at the end of the month. I enjoy each and every day with my wonderful husband and three beautiful girls. God continues to show us so much through Sophie and through every step of our lives.
Sophie's physical therapy is going well. We've met with her therapist twice now and she's guided us with ways to improve Sophie's head control...which is now right on track. We're working with her now to encourage rolling from tummy to back which she's getting the hang of this week. She had been rolling back to tummy before her surgery and still does every once in awhile. My girls have never been big rollers though! And of course we continue to encourage her to use her left hand which was somewhat weakened by the surgery. The therapist also noticed that she was keeping her left hand clenched in a fist, more like a newborn, and called it high muscle tone so we now have ways to stimulate her hand to open more and she's keeping it relaxed more each day. We hope that she'll have made enough progress with it that she won't have to be fitted for a hand splint, but even if she does we'll deal with it and do what's best for her! She's also started sitting in the Bumbo seat and loves looking around at what's going on.
I have struggled off and on with not letting all this get to me. Sometimes I get in a funk where I feel like this physical therapy is all on me and that if she doesn't achieve a goal it is my fault. I know it's not in my control and that we as a family are in this together and will do the best we can to help her progress. She's so on track milestone-wise that we feel very blessed, especially with all the reading on Tuberous Sclerosis we did when she was born. And really, she doesn't get that much physical therapy. It's a once a month meeting where we get tips and goals to work on for the coming month. The one thing that I keep working on is living day to day. I do the best I can each day with all three of my girls and when the day is over, I box it up, put it away and look to the next day. God is in control here and He has led us this far and will continue to lead us each day no matter what comes. He has brought us such joy and calm over the past several months and we are so thankful.
So yesterday I had an unexpected conversation with the nurse from Sophie's neurologist's office. She called because I have recently had blood drawn to send off for genetic testing (Mike will do this too) to rule out if one of us might have TS and just never have manifested any of the symptoms or problems. By the way, most TS cases are a spontaneous mutation, but it has happened that one of the parents of a child with TS has it too and just doesn't know. We get tested and if we are fine, then there is no reason to get Kayla or Madelyn tested, especially since they are so healthy and developmentally normal. Anyway, so the nurse calls just to get the date of my blood draw and then asks me how Sophie is doing. I tell her that she's doing great, we haven't seen any seizures and it's been wonderful living this calm life with her, not having to call the doctor all the time. She responds hesitantly, "Well knock on wood...seriously, find some wood and knock on it." I was taken aback. No one has ever responded that way to me and it surprised me because this nurse has an adult child with TS. Every person that has ever asked me about Sophie and how she's doing is thrilled and hopeful that she's doing so well. I tried to brush it off, but it really stuck with me all day yesterday. I kept thinking, "Am I naive for basking in the goodness of life right now? Does this nurse know something I don't? Should I be worried?" I prayed about it last night and after talking to Mike, my mom, and my best friend I feel a lot better today. I have come to the conclusion that what the nurse said was inappropriate. I have faith and hope that the future holds amazing things for Sophie and that each day is a gift. I refuse to KNOCK ON WOOD!!!!! I will continue to pray daily for Sophie and her progress and thank God for each blessing we receive. It's amazing how one person's negative comment can ruin your whole day. And make you doubt yourself. I would much rather have God on my side than a piece of wood. :)
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own. " -Matthew 6:34
Life continues to be good. We are coming up on half a year with our sweet Sophie at the end of the month. I enjoy each and every day with my wonderful husband and three beautiful girls. God continues to show us so much through Sophie and through every step of our lives.
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