We have been SO VERY BLESSED to have loving and caring physical and occupational therapists to help move Kinlee's motor development along, and her behavior, well, we are still working on that.... The 99.9% of the time she is insanely happy, like, manic, can't stop moving and dancing and talking and singing happy and for that I am so very grateful! If there is anything that I have learned through Kinlee's trials, it is that God wants us to be deliriously happy regardless of the obstacles in our paths, confident in the knowledge that He will provide, and Kinlee herself has been my best teacher.
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| Michelle and Kinlee at her 2nd Birthday Party in 2010 |
Our first physical therapist was only her physical therapist for about a year and a half, but she has done more in the way of guiding me into better and more speedy ways to help Kinlee over her seven years than I even knew was possible by introducing me to Young Living Essential Oils and their awesome array of supplements that have been game changers since Kinlee was four years old. Not only was Michelle Weil Kinlee's therapist when she learned to walk, she walked through some pretty rough seasons with our family, with more love and support than you would think a physical therapist would provide! She is still one of my best friends, biggest encouragers, strongest prayer warrior and intercessor in the negative thought patterns that could have overtaken me a long, long time ago. Michelle simply will not have it, she simply will not allow you to speak negative words, and I am truly appreciative that she really taught me what it means to "take every thought captive" (2 Corinthians 10:5) and only project the positive thoughts onto both of my children. This is easier said than done, but we strive for it, and God's grace fills in the gaps!
The physical therapist that began working with Kinlee after Michelle is her PT to this day, the super patient and kind Karen Robinson. She is SO VERY kind and I still, after five years of knowing her, have never seen her upset, even though we have watched her grow through two out of three of her pregnancies! Cora Tardiff has been our occupational therapist for a very long time. She is cheery and bubbly and I hope we never have to change our therapists until we age out of pediatrics! Yeah, we are that blessed.
Here is the last installment of Kinlee's story that I wrote a few years back! I will certainly be back to pick up where it leaves off, and fill you in on the last three years!
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| Karen and Kinlee in 2010 |
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| Ms. Cora!! |
Part IV: The Long Run
Kinlee began physical therapy as soon as her immune system would allow her to be around anyone extra, which was around 7 months old. Before then, taking her anywhere that wasn't absolutely neccessary to her survival was just a risk no one was willing to take. Our first physical therapist was an amazingly sweet, young and freshly graduated Michelle Weil, who has come to mean more to Kinlee and my lives than I could have imagined then. Kinlee was a 7 month old that had almost no muscle tone, kept her right hand tightly in a fist fixed to her chest (we still call it "baby hand" when she gets scared, tired or upset) and she could barely hold her own head up. Even in-utero you are able to move a little and conciously flex your muscles, but Kinlee had been in an induced coma for 30 days and had lost almost all the muscle tone that she had gained in her short 10 wks on Earth before the surgery. And the surgery had resulted in an inability to control her right side entirely. So the first time we arrived at the PT office not only did I not know what to expect out of the PT process, we also didn't know what to expect of Kinlee's poor body! So when I presented this floppy, uncoordinated 7 mos old to Michelle, I don't know what she was thinking, but I was thinking "I am just happy she is alive. Can't we just leave her alone?". I was so tired of people making her cry and her not be able to say "that hurts!" It took a while, but now I know that my flawed thoughts were a product of only thinking about the present. That is all Hem-Onc and Neurosurgery can think. If they brought the past and the future into their present work, they would be overwhelmed! So getting to PT and Neurology was kind of a graduation. We could begin to look at Kinlee's future, and honestly, it was scary.
Thank the Lord that we got such a gentle and kind PT in Michelle. Had she not been so sweet, it would have been easy for me to withdraw to my corner and keep Kinlee away from anything I saw then as a threat to her comfort. But Michelle began to stretch Kinlee's arm and leg, and I saw that it bothered her too when Kinlee wasn't happy, and she handled her so tenderly that there was no cause to retreat. And so began the years of physical therapy for help with gross motor skills (like walking) and occupational therapy for fine motor skill (like buttoning your shirt) and I am sure there will be many more years of therapy to come. But there was no way you could have told me that the floppy baby I took to that first appointment would even be able to walk someday, let alone be the fireball she is today! And if it wasn't for the dedication and perserverance of our PTs and OTs, she probably would not be. Her long-running and current PT is an amazing ray of sunshine too, one Ms. Karen Robinson, is as patient as the day is long. Her OT is Cora Perry, who has a youthful, bouncy, unshakeable presence. It seems the PT and OT professions attract the most caring, devoted and persistent people.
Kinlee took her first steps when she was about 18 mos old and was walking well without help at 22 months. Her right side is still not nearly as strong as her left side, and this has forced her to be left handed. We nicknamed Kinlee's right foot her "pretty foot" and her right hand her "pretty hand" early on. I mean, what do you call it when a child is too young to know their right from left and not make it have a negative connotation?
About a year after her craniotomy, Kinlee began to have seizures that would last an hour or more, and only affected her eyes and right side. She started a daily med that caused a lot of moodiness and behavioral problems. For a kid that seems to be stuck on ridiculously happy all the time, it was hard to watch as she continued to have "breakthrough" seizures and the docs would up her dose of the daily med each time. Recently in the past few months, Michelle, our first PT, has helped me learn how beneficial essential oils (Young Living Essential Oils in particular) can be to the health of your family. These oils have made it possible for Kinlee to get off of her daily seizure medicine (that wasn't much help and caused several problems) and has stopped several episodes quickly.
When Kinlee was a little over 2, she had a small tumor recurrence and once again, she had a craniotomy resection in the same horseshoe shaped scar on her head. This time, she wasn't a tiny, still newborn, she was an electric and mobile 2 yr old! They removed it and this time there was no chemo, Thank the Lord! This past July she had a heel lengthening surgery to help correct her tight muscles, her "toe walking" and help her get her heel to the ground. All I can say about that is PEOPLE, PROTECT YOUR ACHILLES HEEL!
Now Kinlee is in 4K in an inclusive class. This means there is a general education teacher and a special education teacher in her classroom. She knows all of her letter sounds and one of her favorite games is "what letter does this start with?" She is on track to be in a general ed class for 5K.
And if bad handwriting is my biggest current concern at 5, then I call VICTORY!!!
If there is one thing I have learned through all of this, it's that God can do ANYTHING! He put all of the perfect people in our lives at the perfect time and aligned the stars in Kinlee's favor from the start. Only He can see into Kinlee's future. And I know of the limitless possibilities that He can provide. Kinlee surely has more hurdles to jump and obstacles to overcome, and she still has a little ways to go to close the gap between her and her 5 year old peers. But I know that all things are possible now and miracles do happen every day. You won't see me putting boundaries around this Supergirl!
Kinlee began physical therapy as soon as her immune system would allow her to be around anyone extra, which was around 7 months old. Before then, taking her anywhere that wasn't absolutely neccessary to her survival was just a risk no one was willing to take. Our first physical therapist was an amazingly sweet, young and freshly graduated Michelle Weil, who has come to mean more to Kinlee and my lives than I could have imagined then. Kinlee was a 7 month old that had almost no muscle tone, kept her right hand tightly in a fist fixed to her chest (we still call it "baby hand" when she gets scared, tired or upset) and she could barely hold her own head up. Even in-utero you are able to move a little and conciously flex your muscles, but Kinlee had been in an induced coma for 30 days and had lost almost all the muscle tone that she had gained in her short 10 wks on Earth before the surgery. And the surgery had resulted in an inability to control her right side entirely. So the first time we arrived at the PT office not only did I not know what to expect out of the PT process, we also didn't know what to expect of Kinlee's poor body! So when I presented this floppy, uncoordinated 7 mos old to Michelle, I don't know what she was thinking, but I was thinking "I am just happy she is alive. Can't we just leave her alone?". I was so tired of people making her cry and her not be able to say "that hurts!" It took a while, but now I know that my flawed thoughts were a product of only thinking about the present. That is all Hem-Onc and Neurosurgery can think. If they brought the past and the future into their present work, they would be overwhelmed! So getting to PT and Neurology was kind of a graduation. We could begin to look at Kinlee's future, and honestly, it was scary.
Thank the Lord that we got such a gentle and kind PT in Michelle. Had she not been so sweet, it would have been easy for me to withdraw to my corner and keep Kinlee away from anything I saw then as a threat to her comfort. But Michelle began to stretch Kinlee's arm and leg, and I saw that it bothered her too when Kinlee wasn't happy, and she handled her so tenderly that there was no cause to retreat. And so began the years of physical therapy for help with gross motor skills (like walking) and occupational therapy for fine motor skill (like buttoning your shirt) and I am sure there will be many more years of therapy to come. But there was no way you could have told me that the floppy baby I took to that first appointment would even be able to walk someday, let alone be the fireball she is today! And if it wasn't for the dedication and perserverance of our PTs and OTs, she probably would not be. Her long-running and current PT is an amazing ray of sunshine too, one Ms. Karen Robinson, is as patient as the day is long. Her OT is Cora Perry, who has a youthful, bouncy, unshakeable presence. It seems the PT and OT professions attract the most caring, devoted and persistent people.
Kinlee took her first steps when she was about 18 mos old and was walking well without help at 22 months. Her right side is still not nearly as strong as her left side, and this has forced her to be left handed. We nicknamed Kinlee's right foot her "pretty foot" and her right hand her "pretty hand" early on. I mean, what do you call it when a child is too young to know their right from left and not make it have a negative connotation?
About a year after her craniotomy, Kinlee began to have seizures that would last an hour or more, and only affected her eyes and right side. She started a daily med that caused a lot of moodiness and behavioral problems. For a kid that seems to be stuck on ridiculously happy all the time, it was hard to watch as she continued to have "breakthrough" seizures and the docs would up her dose of the daily med each time. Recently in the past few months, Michelle, our first PT, has helped me learn how beneficial essential oils (Young Living Essential Oils in particular) can be to the health of your family. These oils have made it possible for Kinlee to get off of her daily seizure medicine (that wasn't much help and caused several problems) and has stopped several episodes quickly.
When Kinlee was a little over 2, she had a small tumor recurrence and once again, she had a craniotomy resection in the same horseshoe shaped scar on her head. This time, she wasn't a tiny, still newborn, she was an electric and mobile 2 yr old! They removed it and this time there was no chemo, Thank the Lord! This past July she had a heel lengthening surgery to help correct her tight muscles, her "toe walking" and help her get her heel to the ground. All I can say about that is PEOPLE, PROTECT YOUR ACHILLES HEEL!
Now Kinlee is in 4K in an inclusive class. This means there is a general education teacher and a special education teacher in her classroom. She knows all of her letter sounds and one of her favorite games is "what letter does this start with?" She is on track to be in a general ed class for 5K.
And if bad handwriting is my biggest current concern at 5, then I call VICTORY!!!
If there is one thing I have learned through all of this, it's that God can do ANYTHING! He put all of the perfect people in our lives at the perfect time and aligned the stars in Kinlee's favor from the start. Only He can see into Kinlee's future. And I know of the limitless possibilities that He can provide. Kinlee surely has more hurdles to jump and obstacles to overcome, and she still has a little ways to go to close the gap between her and her 5 year old peers. But I know that all things are possible now and miracles do happen every day. You won't see me putting boundaries around this Supergirl!
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