It's been a while! But things are starting to happen for Kennedy so I wanted to make sure to document the journey. 2019 has the potential to be an amazing year for her and we are so hopeful!
Around 2015-ish our Neurologist left Vanderbilt and we began seeing an awesome Nurse Practioner there. She was amazing and asked us if we had ever had any genetic testing done which we had not. No one had ever mentioned it to us before that. The APRN told us that she would like our next visit to be with another Neurologist who specialized in genetics so that, if nothing else, we could talk about our options. And that led us to Dr. Brault at Vanderbilt Children's.
In 2016, we began genetic testing to see if we could determine the cause for Kennedy's seizures and delays. The first panel of tests were for things that were linked to seizures only and all came back normal. Around that time Kennedy began having grand mal seizures which was really scary. We were told it's probably due to puberty approaching and hormone changes. By the end of 2016, Dr. Brault decided to do a genetics panel for things linked to Microcephaly. Everyone that has seen Kennedy has always mentioned she has a small head, but she's tiny so nothing really seemed abnormal to me. I even went so far as to get my records from my pediatrician which showed that I was always behind in growth. About a month later I got a call from the lab who requested that I also needed to submit a sample which made me think that they must have found something. A few months later I got a call from Vanderbilt that Kennedy had shown a mutation in a gene and that she needed to do the Keto diet. There wasn't much explanation about anything and our family was under the impression that the tests just showed that Keto could help with Kennedy's seizures due to this mutation. I guess I dropped the ball at this point because I didn't really look into the genetic condition-- I was told there's not really anything to find and the doctor didn't appear to be too concerned. We tried Keto and Kennedy would rather starve than to change her eating habits. Her seizures had subsided with medication changes so I didn't push the diet. Things were going fine!
So in November 2018 we were at a routine follow up with Dr. Brault. We see her every 6 months so this was nothing out of the ordinary. This visit was different though. The Neurology Department had moved to another location so the appointment didn't seem rushed and we really got to talk about our concerns with Dr. Brault. Don't get me wrong, she's always been very attentive to our concerns, but if you've ever visited the Neuro department at Vanderbilt Children's, you know that there are a million doctors and like 3 patient rooms so it's always an in-and-out process.
Anyway....so like always I mentioned to Dr. Brault that Kennedy is always tired-- sleeping 10-12 hours a night and napping 2-3 hours if she can on the weekends. In the past, Dr. Brault and other doctors had said that it's all due to puberty. Teens sleep a lot and since Kennedy doesn't sleep in, she front loads that sleep and just goes to bed at 7 PM to still get all that sleep...... But this time, Dr. Brault said we should do a sleep study, but she was almost certain it was due to her genetic condition.-- Glut 1 Deficiency Syndrome (more about that in another post). So then I expressed my other concern, that Kennedy is like another person when she's hungry. I'm not talking irritable, I'm talking SPLIT PERSONALITY! She's mean, she's emotional, she's hard to handle...... and guess what-- that also is more than likely from the Glut 1 DS. Basically, her body cannot transport glucose to the brain to use for energy. Not only is she tired all the time she also doesn't get the energy she needs from food because....well....it can't.
Dr. Brault recommended we look for Clinical Trails for Triheptanoin. Some of the trials would not require us to be on a Keto diet, but may help with improving Kennedy's overall functioning.
On the way home from Vanderbilt I drove while mom read off information on Glut 1 DS and Kennedy was the poster child for it! It ALL made sense! Kennedy "checked off every box". Cue the mom guilt in that I hadn't researched it when we first got the genetics test back, but honestly, the way it was presented to us just made us think they were telling us the Keto diet would help with the seizures. There was no mention of any of our other concerns being linked to this condition. I keep reminding myself that I could only make decisions based on the information I had so I'm trying not to be too hard on myself. In the past, we'd had the Epilepsy and Cerebral Palsy diagnoses but we never really "fit" into those. Kennedy doesn't have a lot of seizures-- and a lot of epilepsy families I met were dealing with many seizures a day. And then of course Cerebral Palsy-- she can walk so we didn't really fit in with most kids there either.
Now it seems we have found our place and other people who are on our same journey! In a couple of weeks we will be flying to Dallas to start the trial for the Triheptanoin. After getting home from Vanderbilt that day I reached out to two studies and heard back from both within hours. One of studies was on hold, the other study was very interested in Kennedy's participation. After talking to the doctor leading the study, I knew that we had to give this a try. It's an all-natural oil that has minimal side effects (tummy troubles are possible) but the potential to offer many improvements for Kennedy. I will give more details on all of this soon, but I wanted to catch everyone up on this exciting news!
Stay tuned!
Tuesday, January 15, 2019
Thursday, April 11, 2013
Tough Week
As of Monday, Kennedy is down to two medicines, twice a day. It's nice because our mid-day dose is completely gone and any day plans often had to revolve around being able to take her medicine....or take it with us (and of course the bottles always leaked). To me, she's seemed more alert and bright eyed despite being sleep deprived.
Kennedy hasn't woken up screaming any this week, but she has tossed and turned every night and whimpered some in her sleep. I'm not sure if she's having bad dreams or just weird dreams because she can't really communicate anything about her dreams. I've been putting her to bed at 7 each evening and she sleeps until at least 6:30 the following morning. Most of the week we had her sleep on an air mattress in our room in case she had any sleep walking or nightmares, but she has so restless that none of us were sleeping. So she's returned to her own bed...in her own room....
The return to school this week has been tough on her! Of course, any kiddo has trouble getting back into the swing of things after a break, but she has always had a more difficult time. Couple that with medicine changes and sleep deprivation and it's not been a good week for her. She's extra agitated (side effect of her meds) and has no patience to work on any activity. She immediately shuts down and says the work is too hard-- when it's obviously not. Hopefully this will get better. One thing I have noticed is that she doesn't look exhausted when I pick her up in the afternoons. It could be because she doesn't get that mid-day dose or maybe she just feels better with the new medicine. Oh and did I mention I've only seen TWO seizures since she started the new meds?? Thank you, Jesus!!
Yesterday, Kennedy took quite a spill at her friend's house trying to get out of the sandbox. She has extremely delayed reflexes so injuries are quite common for her because she's unable to break her fall. She has a pretty nasty lip but she didn't cry at all when it happened. I can hardly believe it. She's one tough cookie!! She constantly amazes me with her strength!
Kennedy hasn't woken up screaming any this week, but she has tossed and turned every night and whimpered some in her sleep. I'm not sure if she's having bad dreams or just weird dreams because she can't really communicate anything about her dreams. I've been putting her to bed at 7 each evening and she sleeps until at least 6:30 the following morning. Most of the week we had her sleep on an air mattress in our room in case she had any sleep walking or nightmares, but she has so restless that none of us were sleeping. So she's returned to her own bed...in her own room....
The return to school this week has been tough on her! Of course, any kiddo has trouble getting back into the swing of things after a break, but she has always had a more difficult time. Couple that with medicine changes and sleep deprivation and it's not been a good week for her. She's extra agitated (side effect of her meds) and has no patience to work on any activity. She immediately shuts down and says the work is too hard-- when it's obviously not. Hopefully this will get better. One thing I have noticed is that she doesn't look exhausted when I pick her up in the afternoons. It could be because she doesn't get that mid-day dose or maybe she just feels better with the new medicine. Oh and did I mention I've only seen TWO seizures since she started the new meds?? Thank you, Jesus!!
Yesterday, Kennedy took quite a spill at her friend's house trying to get out of the sandbox. She has extremely delayed reflexes so injuries are quite common for her because she's unable to break her fall. She has a pretty nasty lip but she didn't cry at all when it happened. I can hardly believe it. She's one tough cookie!! She constantly amazes me with her strength!
Thursday, April 4, 2013
2013 Achievements
Since the last post was somewhat "heavy," I figured it was only fitting to also blog about Kennedy's awesome accomplishments in 2013. Plus the purpose of this blog is so that when the times get hard I have a visual reminder of how far we've come in this journey. So please give me this proud mom moment :)
Here goes:
1. She's learning to zip her jacket and can do it independently about 50% of the time!
2. She's obsessed with One Direction (which is not an achievement) but she knows all the words to most of their songs (which is an achievement)-- although their c.d. is about to go missing, probably because it will accidentally fly out the car window....but that's just a guess......
3. Not only can she get in the car independently now, she can close the car door from inside the car and-----wait for it---- buckle the seatbelt!! FINALLY!
4. Her handwriting has improved tremendously this year! No iPad needed at this point
5. Today in speech, she finally caught on to the "ch" sound and is really trying hard on the "th" sounds-- one day everyone will understand her! :)
6. She's learned to jump rope (which may have been included in my last achievement list, but she's even better now!)
7. Most of the time, she can get both shoes on her feet if they aren't untied.
8. I'm not sure where she's learned it but she has learned to shake her booty---a lot! (Probably got that from her Nana)
9. She can button clothes with a nickel-sized button
10. Thanks to cheerleading, she has mastered a toe-touch......and does it 123854798168 times each day
11. Her self-confidence went from non-existent at the beginning of the school year to "satisfactory" on her last report card!
12. About 75% of the time she will order her own food when we go to restaurants (though Mommy sometimes has to translate)
13. She's learned to carry Milo (our dog) around without using a choke-hold
14. She's almost mastered taking a shirt off, but sometimes gets a little twisted up
15. She is starting to help me with household chores like feeding Milo, folding wash cloths, putting away her PJs, but is still stumped on how to clean her own room :)
16. Today, she finally admitted she was "too old" for Dora or other Playhouse Disney shows. (Thank goodness!)
I'm sure there are lots more accomplishments in the last 3 months but I'm tired and it's hard to list them all on the spot. I'm sure most 4 or 5-year-olds have mastered all these tasks, but for a little girl who wasn't supposed to amount to much according to the doctors, we rejoice in every little victory!
Here goes:
1. She's learning to zip her jacket and can do it independently about 50% of the time!
2. She's obsessed with One Direction (which is not an achievement) but she knows all the words to most of their songs (which is an achievement)-- although their c.d. is about to go missing, probably because it will accidentally fly out the car window....but that's just a guess......
3. Not only can she get in the car independently now, she can close the car door from inside the car and-----wait for it---- buckle the seatbelt!! FINALLY!
4. Her handwriting has improved tremendously this year! No iPad needed at this point
5. Today in speech, she finally caught on to the "ch" sound and is really trying hard on the "th" sounds-- one day everyone will understand her! :)
6. She's learned to jump rope (which may have been included in my last achievement list, but she's even better now!)
7. Most of the time, she can get both shoes on her feet if they aren't untied.
8. I'm not sure where she's learned it but she has learned to shake her booty---a lot! (Probably got that from her Nana)
9. She can button clothes with a nickel-sized button
10. Thanks to cheerleading, she has mastered a toe-touch......and does it 123854798168 times each day
11. Her self-confidence went from non-existent at the beginning of the school year to "satisfactory" on her last report card!
12. About 75% of the time she will order her own food when we go to restaurants (though Mommy sometimes has to translate)
13. She's learned to carry Milo (our dog) around without using a choke-hold
14. She's almost mastered taking a shirt off, but sometimes gets a little twisted up
15. She is starting to help me with household chores like feeding Milo, folding wash cloths, putting away her PJs, but is still stumped on how to clean her own room :)
16. Today, she finally admitted she was "too old" for Dora or other Playhouse Disney shows. (Thank goodness!)
I'm sure there are lots more accomplishments in the last 3 months but I'm tired and it's hard to list them all on the spot. I'm sure most 4 or 5-year-olds have mastered all these tasks, but for a little girl who wasn't supposed to amount to much according to the doctors, we rejoice in every little victory!
Amazing!
Wow! I can't believe it-- I've had nearly 200 views from yesterday's post in about 24 hours. I had no idea that so many people cared about our family! Thanks to each one of you who are following us in this journey. Your calls, texts, emails, and prayers have kept us going.
I'm happy to report we had NO NIGHTMARES last night! Praise God! But Kennedy did talk A LOT during her sleep and Jeremy caught her sitting straight up in bed (but sleeping) when he got home from work last night. lol But she can sleep-talk or sleepwalk for all I care as long as she doesn't wake up screaming like she's being murdered. It's NOT a good way for any of us to wake up in this household!
Yesterday and today Kennedy has had a serious case of the hiccups! And what do you know.... that's a side effect of the new medicine. She's getting really frustrated and keeps telling me she "never" going to get rid of them. I certainly hope this passes because she's getting really frustrated that she can't say what she wants to say because of her hiccups. (And quite frankly, I am miserable when I have them so I feel her pain.)
Today Kennedy was able to catch up on her sleep. She had to be sleep deprived Monday for her testing and didn't take a nap that day. She's napped every day since and is finally starting to feel better I think. She was seriously funny today! Some of the things that she said and did just made me full of happiness with God's grace! It was the best day that we've had in a long time! She is such a little blessing to our family and I'm not quite sure positive that my life would have a purpose without her in it-- even on the tough days.
I've had a lot of people tell me they are sorry for what Kennedy's going through and I am grateful for that-- but it doesn't make things any easier. But we all have our own cross to bear and this is our family's battle. A few months ago I was listening to Way-FM and there was a man that called in thanking the station for being a big comfort after the death of his young son in an accident. The father said he had been angry at God with taking this sweet little boy away and couldn't understand why God couldn't just prevent the accident from occurring--but then he realized that God has that power (just like he could have taken away the circumstances surrounding His Son's death), but there was a greater purpose in the tragedy because it made this family lean on God for comfort when no one else knew quite what to say. I see how many people simply adore and love my sweet girl and I know she has a big purpose in this world! There is a blessing somewhere in all this mess and I know one day I will see it all so clearly.
And while of course, I would give anything if these seizures would stop for good and Kennedy's body was healed, I'll cling tightly to my Rock and know that He goes with us in this journey.
He alone is my rock and my salvation, my fortress where I will never be shaken. Psalm 62:2
Do not be afraid or discouraged, for the LORD will personally go ahead of you. He will be with you; he will neither fail you nor abandon you." Deuteronomy 31:8
Until next time......
I'm happy to report we had NO NIGHTMARES last night! Praise God! But Kennedy did talk A LOT during her sleep and Jeremy caught her sitting straight up in bed (but sleeping) when he got home from work last night. lol But she can sleep-talk or sleepwalk for all I care as long as she doesn't wake up screaming like she's being murdered. It's NOT a good way for any of us to wake up in this household!
Yesterday and today Kennedy has had a serious case of the hiccups! And what do you know.... that's a side effect of the new medicine. She's getting really frustrated and keeps telling me she "never" going to get rid of them. I certainly hope this passes because she's getting really frustrated that she can't say what she wants to say because of her hiccups. (And quite frankly, I am miserable when I have them so I feel her pain.)
Today Kennedy was able to catch up on her sleep. She had to be sleep deprived Monday for her testing and didn't take a nap that day. She's napped every day since and is finally starting to feel better I think. She was seriously funny today! Some of the things that she said and did just made me full of happiness with God's grace! It was the best day that we've had in a long time! She is such a little blessing to our family and I'm
I've had a lot of people tell me they are sorry for what Kennedy's going through and I am grateful for that-- but it doesn't make things any easier. But we all have our own cross to bear and this is our family's battle. A few months ago I was listening to Way-FM and there was a man that called in thanking the station for being a big comfort after the death of his young son in an accident. The father said he had been angry at God with taking this sweet little boy away and couldn't understand why God couldn't just prevent the accident from occurring--but then he realized that God has that power (just like he could have taken away the circumstances surrounding His Son's death), but there was a greater purpose in the tragedy because it made this family lean on God for comfort when no one else knew quite what to say. I see how many people simply adore and love my sweet girl and I know she has a big purpose in this world! There is a blessing somewhere in all this mess and I know one day I will see it all so clearly.
And while of course, I would give anything if these seizures would stop for good and Kennedy's body was healed, I'll cling tightly to my Rock and know that He goes with us in this journey.
He alone is my rock and my salvation, my fortress where I will never be shaken. Psalm 62:2
Do not be afraid or discouraged, for the LORD will personally go ahead of you. He will be with you; he will neither fail you nor abandon you." Deuteronomy 31:8
Until next time......
Wednesday, April 3, 2013
Vanderbilt Update
“Isn’t it funny how day by day nothing changes but when you look back everything is different…” – C.S. Lewis
I haven't blogged in a LONG time because I guess from day to day, nothing much seemed "blog-worthy." But looking back over the last year--- SO MUCH has changed.
It's been a really tough week.....
A year ago, on April 1st, 2012, we went to Vanderbilt for Kennedy's routine checkup with the Neurologist. She had been doing so well that we had planned for an EEG this year (on Monday) and if Kennedy continued to not have seizures and the EEG was normal, we could start weaning her off her seizure meds. It would have been the first time since she was 7 months old that we would not be taking medicines multiple times per day...... But several months ago, Kennedy started having petit mal seizures many, many times each day. Within the last couple of months, they have increased her medicines twice-- but the seizures continued.
So Monday, we went in for our scheduled EEG. They were able to trigger a seizure which was the first time she has seized during any test which was a good thing. But my mom and I were able to watch the test results on the computer and noticed that she was having spikes of activity every 10-20 seconds. According to her neurologist, these "sparks" are seizure activity, but not all of them turn into seizures that we are able to see. This has been terribly upsetting because although we have seen LOTS of seizures, we had no idea she was seizing that much!
As we were talking to the doctor, I had big decisions to make on the spot. We could increase one of her current medications which would control both the petit mal (Depakene) and the complex-partial seizures (Keppra) (both controlled with Depakene alone-- that sounded great because we'd be able to stop the second medication!)......BUT there were concerns. First, higher doses of Depakene would cause tremors-- and since she already has pretty bad tremors, they would get worse and she would have trouble holding things in her hands. Not good! Plus, if the medication was able to control her seizures, she could not use it long-term because it could cause liver damage/failure.
Our other option was to keep her on Keppra for the convulsions-- but stop the Depakene (since it causes liver problems long term) and add Zarontin which is a medication that is specifically used to treat petit mal seizures. That sounded like a good plan, but there was a catch. Kennedy had been on this medication about three years ago and had terrible nightmares while she took it. She would wake up screaming every night.
How could I make a decision like that so quickly? Should I give my child a medicine that could damage her liver? Or do I give her medicine that I know is going to give her terrible dreams? I'm sure it seems like an easy decision, but until you are in that position-- you have no idea! I felt like no matter what choice I made, Kennedy was going to suffer. So I asked the Neurologist what he thought would be the best bet and he said he'd like to try the Zarontin because he only knew of one other patient that had nightmares from the medicine and since Kennedy was older, it might not be a concern.
So I took his advice and agreed to the changes. We started weaning her off of the Depakene, giving her an increased dose of Keppra and added the Zarontin. Yesterday was the first full day of Zarontin and she woke up screaming last night and saying a witch was after her. I pray this was just a coincidence she had a nightmare after starting the medicine, but we'll have to wait and see. The doctor wants her to try this medicine for at least 2 weeks to see if the nightmares stop. If we are unable to get the seizures to stop, we may have to spend the night in the EMU (Epilepsy Monitoring Unit) at Vanderbilt.
I was certainly hoping for a different outcome from our visit, but seeing all the seizure activity on the EEG was heart-breaking. Please continue to keep Kennedy and our family in your prayers. This is not an easy circumstance to go through.
I haven't blogged in a LONG time because I guess from day to day, nothing much seemed "blog-worthy." But looking back over the last year--- SO MUCH has changed.
It's been a really tough week.....
A year ago, on April 1st, 2012, we went to Vanderbilt for Kennedy's routine checkup with the Neurologist. She had been doing so well that we had planned for an EEG this year (on Monday) and if Kennedy continued to not have seizures and the EEG was normal, we could start weaning her off her seizure meds. It would have been the first time since she was 7 months old that we would not be taking medicines multiple times per day...... But several months ago, Kennedy started having petit mal seizures many, many times each day. Within the last couple of months, they have increased her medicines twice-- but the seizures continued.
So Monday, we went in for our scheduled EEG. They were able to trigger a seizure which was the first time she has seized during any test which was a good thing. But my mom and I were able to watch the test results on the computer and noticed that she was having spikes of activity every 10-20 seconds. According to her neurologist, these "sparks" are seizure activity, but not all of them turn into seizures that we are able to see. This has been terribly upsetting because although we have seen LOTS of seizures, we had no idea she was seizing that much!
As we were talking to the doctor, I had big decisions to make on the spot. We could increase one of her current medications which would control both the petit mal (Depakene) and the complex-partial seizures (Keppra) (both controlled with Depakene alone-- that sounded great because we'd be able to stop the second medication!)......BUT there were concerns. First, higher doses of Depakene would cause tremors-- and since she already has pretty bad tremors, they would get worse and she would have trouble holding things in her hands. Not good! Plus, if the medication was able to control her seizures, she could not use it long-term because it could cause liver damage/failure.
Our other option was to keep her on Keppra for the convulsions-- but stop the Depakene (since it causes liver problems long term) and add Zarontin which is a medication that is specifically used to treat petit mal seizures. That sounded like a good plan, but there was a catch. Kennedy had been on this medication about three years ago and had terrible nightmares while she took it. She would wake up screaming every night.
How could I make a decision like that so quickly? Should I give my child a medicine that could damage her liver? Or do I give her medicine that I know is going to give her terrible dreams? I'm sure it seems like an easy decision, but until you are in that position-- you have no idea! I felt like no matter what choice I made, Kennedy was going to suffer. So I asked the Neurologist what he thought would be the best bet and he said he'd like to try the Zarontin because he only knew of one other patient that had nightmares from the medicine and since Kennedy was older, it might not be a concern.
So I took his advice and agreed to the changes. We started weaning her off of the Depakene, giving her an increased dose of Keppra and added the Zarontin. Yesterday was the first full day of Zarontin and she woke up screaming last night and saying a witch was after her. I pray this was just a coincidence she had a nightmare after starting the medicine, but we'll have to wait and see. The doctor wants her to try this medicine for at least 2 weeks to see if the nightmares stop. If we are unable to get the seizures to stop, we may have to spend the night in the EMU (Epilepsy Monitoring Unit) at Vanderbilt.
I was certainly hoping for a different outcome from our visit, but seeing all the seizure activity on the EEG was heart-breaking. Please continue to keep Kennedy and our family in your prayers. This is not an easy circumstance to go through.
She is my hero! So brave!!
As my dear friend, Champ has nothing on my tough little girl!
She definitely deserved a trip to Build a Bear after our visit-- and now she wants to wear her new bear's glasses all the time. Who couldn't love that sweet face??
Monday, October 29, 2012
Change is GOOD
It's so funny how you look back on certain points in your life and now find humor in situations that had you seriously stressed out! As most of you know, I spent the summer in complete distress about Kennedy's school. I knew she wouldn't be returning to her old school and I was so extremely worried that the change would be hard for her......that she would have trouble making friends, would be lost in a new building, etc, etc. I spent many, many, MANY sleepless nights worrying about this big life change.
Needless to say Kennedy has taken it all in stride and has really blossomed at her new school. She has learned her way around, made new friends, and even learned to jump rope! (Who knew??) I ask her often if she still likes her school and she always tells me yes and that she has no interest in going back to her old one. She is amazing us all with everything that she is learning too! She breezes through homework and is so proud of herself for understanding the material--especially math!
Now, I wonder why it took me so long to accept the idea of her changing schools! Had I known it would have been such a great thing for her, I would have done it sooner. But it all happened for a reason! We met some wonderful people, Kennedy found awesome friends, and I found one of my best friends along the way! :)
On another note.....lately, I really feel that Kennedy is becoming more aware of the things that she can't do as easily as her peers. Understandably, this is very frustrating for her. All kids want to fit in and it's not so easy for her. So in an attempt to boost her self-confidence, we took her to a cheer practice last week with a squad that welcomes kids with special needs. Kennedy LOVED it! She has asked every day when she can go back to practice and I am so happy that she has found something that interests her. We have tried lots of other activities (dance, karate,etc) and it was very discouraging for her because she couldn't keep up with the other kids. I am very excited to see her confidence grow through cheerleading!!
I know I always say this but I promise to get better at blogging! Until next time.....
Saturday, July 14, 2012
It's been a while......tooooooo long actually
I am writing this blog with an overwhelmingly grateful heart. It's been one year-- THREE HUNDRED SIXTY-FIVE DAYS--- since we have been through a seizure in our household. I am so thankful! At one point we couldn't go two weeks without experiencing a seizure! And here we are.....prayers answered!!
It was December 25, 2004 that we had spent Kennedy's first Christmas day in an emergency room after her first seizure. "Sometimes kids just have seizures" we were told but I knew it wasn't "just a seizure."
Perhaps I should back up...to my MISERABLE days of pregnancy. I was at Cool Springs mall with my mom and we saw a group of special needs kids. I remember breaking down and telling my mom I didn't want a special needs kids-- i was already preparing to be a single mom and i was sure i did not have the strength for the added pressure of a child with special need. Something deep in my gut was preparing me for what was to come---even if I didn't know it in my head.
So after we had the first seizure on Kennedy's first Christmas, we continued to have seizures. So in March we went to our first appointment at Kosairs in Louisville wit a neurologist. We went through lot of testing and it was probably harder on me than on Kennedy. At this point Kennedy was 9 months old and not doing much as far as her development goes. No sitting up......no crawling....no pulling up...... And we were given "the news." Kennedy had cerebral palsy. We were pretty much told that Kennedy would NEVER walk or talk. We were told she would probably always need more help that other kids and be in "special classes." And then the neurologist's cell rang and he talked to his wife about dinner plans while I cried my eyes out. My life was changed dramatically and it was just another day at the office for the doctor.
Needless to say....my parents and I never gave up on Kennedy and she learned to walk and talk. Hr neurologist called her "a miracle". Eventually we moved on to a doctor at Vanderbilt who found just the right medications to get her to where we are today. Sure she is a behind her peers, but she is so much more advanced than she should have been if we listened to the doctors. Every time she talks back or runs away, I am so thankful to God that she can talk and can walk.
This has been a very emotional blog so next time I will update you guys on our life over the last 7 months since my last blog. We are finally making a move in schools and it's going to be a great thing for Kennedy. I will explain more in my next blog. For now, I am giving glory to God to this great accomplishment that is only HIS doing----1 year seizure-free for my walking and talking girl!
It was December 25, 2004 that we had spent Kennedy's first Christmas day in an emergency room after her first seizure. "Sometimes kids just have seizures" we were told but I knew it wasn't "just a seizure."
Perhaps I should back up...to my MISERABLE days of pregnancy. I was at Cool Springs mall with my mom and we saw a group of special needs kids. I remember breaking down and telling my mom I didn't want a special needs kids-- i was already preparing to be a single mom and i was sure i did not have the strength for the added pressure of a child with special need. Something deep in my gut was preparing me for what was to come---even if I didn't know it in my head.
So after we had the first seizure on Kennedy's first Christmas, we continued to have seizures. So in March we went to our first appointment at Kosairs in Louisville wit a neurologist. We went through lot of testing and it was probably harder on me than on Kennedy. At this point Kennedy was 9 months old and not doing much as far as her development goes. No sitting up......no crawling....no pulling up...... And we were given "the news." Kennedy had cerebral palsy. We were pretty much told that Kennedy would NEVER walk or talk. We were told she would probably always need more help that other kids and be in "special classes." And then the neurologist's cell rang and he talked to his wife about dinner plans while I cried my eyes out. My life was changed dramatically and it was just another day at the office for the doctor.
Needless to say....my parents and I never gave up on Kennedy and she learned to walk and talk. Hr neurologist called her "a miracle". Eventually we moved on to a doctor at Vanderbilt who found just the right medications to get her to where we are today. Sure she is a behind her peers, but she is so much more advanced than she should have been if we listened to the doctors. Every time she talks back or runs away, I am so thankful to God that she can talk and can walk.
This has been a very emotional blog so next time I will update you guys on our life over the last 7 months since my last blog. We are finally making a move in schools and it's going to be a great thing for Kennedy. I will explain more in my next blog. For now, I am giving glory to God to this great accomplishment that is only HIS doing----1 year seizure-free for my walking and talking girl!
Saturday, December 17, 2011
God Sent to Me an Angel
I just found this poem and wanted to share. Just a little reminder for us all...
God Sent to Me an Angel
by: Paul Dammann
God sent to me an angel,
it had a broken wing.
I bent my head and wondered
“How could God do such a thing?”
it had a broken wing.
I bent my head and wondered
“How could God do such a thing?”
When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said “Listen and you’ll see.”
“My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and you don’t know what to do,
remember, I am with you,
love is all I ask of you.”
why He sent this child to me,
the answer was forthcoming,
He said “Listen and you’ll see.”
“My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and you don’t know what to do,
remember, I am with you,
love is all I ask of you.”
And seven months later....
...Kennedy got her iPad yesterday from school!! While she doesn't yet have all the apps on it, she does have a few lite versions of apps to use over Christmas break. Let me just tell you that my girl has not put the thing down for the last 24 hours! She is reading books on it, playing math games on it, and spelling words---and she is having fun!! She has no idea she is also learning which is just amazing. She's also been working on getting familiar with the keyboard and is getting pretty quick at typing her name.
When the week started, I had no idea she would be able to bring it home with her over the break, but I was hoping she would be able to work on learning how to maneuver her way around on it. The technology assessment happened a month ago and I had to track down the report from Spalding University because it apparently never made it to the school a week after the assessment.... But I emailed Spalding (who did the assessment) and two days later the school had the report. Not sure why it was so easy for me to get it taken care of, but not so easy for the school. (I have my thoughts and those close to me know my thoughts, but no need to post it here) :) I have definitely learned that if I don't advocate for my child, no one at her school will. Who would have thought when the iPad was suggested for her in MAY, it would finally be in her hands by the end of DECEMBER?? Now 1/2 a school year has been wasted on people dragging their feet.....but the good news is she has it and we are very, very thankful for that!
In other news, it should be just a matter of a couple months before Kennedy can begin receiving MPW services. We have sent in her budget and we have some fantastic people who are willing to work with her so I'm very excited about it! Also, Kennedy informed me recently that she wanted to change her last name. I was pretty excited thinking that she wanted to take Jeremy's last name too, but she quickly informed me that she wanted the last name of one of her best buddies. She already thinks she's part of their family anyway... lol
Lately, I've really been feeling God putting something on my heart-- the need to start a group for Special Needs Parenting. I hate to call it a support group, but I feel that it would be great to be able to share stories, setbacks, and successes with other parents who understand. I am not really sure where to start with all of this so it's definitely a work in progress.
So that's a quick update and I will try my best to update more often now that my computer is fixed. Hopefully Kennedy will be making lots of progress worth sharing over the next several months. Merry Christmas to everyone!!
When the week started, I had no idea she would be able to bring it home with her over the break, but I was hoping she would be able to work on learning how to maneuver her way around on it. The technology assessment happened a month ago and I had to track down the report from Spalding University because it apparently never made it to the school a week after the assessment.... But I emailed Spalding (who did the assessment) and two days later the school had the report. Not sure why it was so easy for me to get it taken care of, but not so easy for the school. (I have my thoughts and those close to me know my thoughts, but no need to post it here) :) I have definitely learned that if I don't advocate for my child, no one at her school will. Who would have thought when the iPad was suggested for her in MAY, it would finally be in her hands by the end of DECEMBER?? Now 1/2 a school year has been wasted on people dragging their feet.....but the good news is she has it and we are very, very thankful for that!
In other news, it should be just a matter of a couple months before Kennedy can begin receiving MPW services. We have sent in her budget and we have some fantastic people who are willing to work with her so I'm very excited about it! Also, Kennedy informed me recently that she wanted to change her last name. I was pretty excited thinking that she wanted to take Jeremy's last name too, but she quickly informed me that she wanted the last name of one of her best buddies. She already thinks she's part of their family anyway... lol
Lately, I've really been feeling God putting something on my heart-- the need to start a group for Special Needs Parenting. I hate to call it a support group, but I feel that it would be great to be able to share stories, setbacks, and successes with other parents who understand. I am not really sure where to start with all of this so it's definitely a work in progress.
So that's a quick update and I will try my best to update more often now that my computer is fixed. Hopefully Kennedy will be making lots of progress worth sharing over the next several months. Merry Christmas to everyone!!
Monday, October 24, 2011
Exciting news!
I realize that I have really slacked with blogging, but we have been so incredibly busy lately. Jeremy is working CRAZY hours (6 days a week, 12-14 hour days) so Kennedy and I have been spending lots of time together in the evening. I also started a new job with hours that are a little longer than my last job so our evenings fill up with homework, bath time, dinner, and story time. Basically, not much free time for Mommy! :)
About two weeks ago, I received a call from school regarding Kennedy's technology assessment. During our meeting September 8th, I had been told that the assessment should happen within 30 days. When I received the call from school, I was told that the assessment hadn't been done and, in fact, Spalding University was being requested to do the assessment. An ARC meeting was scheduled and I was so livid. How had a month-and-a-half gone by and NOTHING had been done?? How had the first semester nearly moved right along while my child struggled every single day with writing, homework, etc? And NOW they wanted Spalding University to do the assessment. Needless to say, I was not looking forward to the meeting--especially when I was told that the meeting was necessary for me to give permission for the technology assessment. Did I not do that the first week of September??
The meeting went surprisingly well and despite the fact that Spalding is going to be doing a technology assessment for Kennedy, an iPad was ordered that day for Kennedy! One of the team members said that "if any child needed assisted technology, Kennedy certainly does." FINALLY!!! I'm not sure how long it will take to come in, but I am so excited because Kennedy's teacher will be able to send homework to the iPad and she can complete it and submit it back to him--all without struggling through writing! For those who aren't as familiar with Kennedy's trouble, she struggles with anything involving fine motor skills. For homework, we have to go through it once for her to give me the answers, then I will write her answers with a highlighter, then she traces over the highlighted words. (Let's just say it takes at least three times as long as it should with your "average" kid) She gets tired very easily when she's writing, her letters get larger and less legible the more she writes, and even when she gives it her all, it's still looks like a toddler beginning to use a pencil. So an iPad will hopefully engage her and motivate her, without all the frustration. Now, she can be frustrated with the work that gets more challenging rather than having the added struggle with writing. Of course, we'll continue to work on writing the old-fashion way, but with her fine motor trouble, who knows if writing ever be a strong skill of hers?
On another note, Kennedy was approved for the Michelle P Waiver. Thank you, Jesus!!! We are waiting for things to get started, but I'm beginning to line up a couple people who will be able to work with her and I can't wait. They are people that Kennedy loves and they love her so I know they will do everything they can to help her progress and succeed. I'll try to keep everyone in the loop as things get started for her, but I am so excited about things to come. God is so good!!
About two weeks ago, I received a call from school regarding Kennedy's technology assessment. During our meeting September 8th, I had been told that the assessment should happen within 30 days. When I received the call from school, I was told that the assessment hadn't been done and, in fact, Spalding University was being requested to do the assessment. An ARC meeting was scheduled and I was so livid. How had a month-and-a-half gone by and NOTHING had been done?? How had the first semester nearly moved right along while my child struggled every single day with writing, homework, etc? And NOW they wanted Spalding University to do the assessment. Needless to say, I was not looking forward to the meeting--especially when I was told that the meeting was necessary for me to give permission for the technology assessment. Did I not do that the first week of September??
The meeting went surprisingly well and despite the fact that Spalding is going to be doing a technology assessment for Kennedy, an iPad was ordered that day for Kennedy! One of the team members said that "if any child needed assisted technology, Kennedy certainly does." FINALLY!!! I'm not sure how long it will take to come in, but I am so excited because Kennedy's teacher will be able to send homework to the iPad and she can complete it and submit it back to him--all without struggling through writing! For those who aren't as familiar with Kennedy's trouble, she struggles with anything involving fine motor skills. For homework, we have to go through it once for her to give me the answers, then I will write her answers with a highlighter, then she traces over the highlighted words. (Let's just say it takes at least three times as long as it should with your "average" kid) She gets tired very easily when she's writing, her letters get larger and less legible the more she writes, and even when she gives it her all, it's still looks like a toddler beginning to use a pencil. So an iPad will hopefully engage her and motivate her, without all the frustration. Now, she can be frustrated with the work that gets more challenging rather than having the added struggle with writing. Of course, we'll continue to work on writing the old-fashion way, but with her fine motor trouble, who knows if writing ever be a strong skill of hers?
On another note, Kennedy was approved for the Michelle P Waiver. Thank you, Jesus!!! We are waiting for things to get started, but I'm beginning to line up a couple people who will be able to work with her and I can't wait. They are people that Kennedy loves and they love her so I know they will do everything they can to help her progress and succeed. I'll try to keep everyone in the loop as things get started for her, but I am so excited about things to come. God is so good!!
Monday, August 29, 2011
Success!
I realize that I am slacking at blogging about this school year and while I've laid in bed several nights in the last month with the urge to get up and blog about something that's happened, I'm honestly exhausted by the end of the day. It's been a rough few weeks as I've tried to get some issues straightened out at school. I'll sum up the issue to catch you guys up......
First, we had a meeting May 6th to talk about Kennedy's progress last year and the suggestion was brought to her ARC meeting that Kennedy could possibly benefit from an iPad as she has the most trouble with writing--either legibly or without getting tired after just a few words. I was told to work with Kennedy this summer about learning letters on the keyboard and just getting her more comfortable with typing. Well we did that. And despite multiple emails---many even un-returned-- I tried to figure out what was going on with the iPad since the first day of school. While I understand teachers are busy, I can't just sit by and watch my child have such difficulty with school when a piece of technology could be so beneficial for her. I even offered to purchase an iPad if they would help us with the Apps (some of the apps they suggested for Kennedy were big bucks--like $200 bucks-- yikes!) I was told specifically not to buy one and to let the school do it---but no at the school would give me any information on anything. Then, I receive an email stating that Kennedy is going to have to go through an assessment to see what technology would be beneficial for her. Ok, no one said anything about that in MAY. And we had an entire month of May, a summer, and all of August to get any assessments done, but here it is, nearly September, and no progress has been made. So I emailed the new principal about it, and what do you know, the next morning I was receiving phone calls to set up meetings and plans were being made for Kennedy to try out an iPad in another classroom, and so on. We have her team meeting on Thursday so hopefully good things will come from the meeting. I just want Kennedy to be a school that is looking out for her best interests and if it's not her current school, then perhaps it's just not the place she needs to be. While I would hate to pull her from a school that she's been at for 3 years now and away from her friends, I need to do what's best for her in the long run. I'll just have to make some decisions after the meeting on Thursday.
On a happier note, I sent a referral for the Michelle P Waiver for Kennedy last week. Before I had my current job, I had no idea about this program, but I think that it would be FABULOUS for Kennedy. Basically, it's somewhat like the program that my work participates in (and we work with this waiver program also), except the clients can live with their parents/guardians. It would help Kennedy get the services she needed, such as speech, OT, and PT and also as she got older, the program would help her with supported employment and other things to become more independent. She should be getting an assessment scheduled within the next week or two and the approval process takes a LONG time, but it will definitely be worth it if I can get her approved. This is definitely NOT something that is just passed along freely to families of special needs people so if you know someone with special needs people (kids or adults-- mental or developmental disabilities), I'd LOVE to talk to them about this AWESOME program or make sure that they go to the Medicaid website for the Michelle P Waiver.
And here's the best news I've heard in a LONG time........After a long, stressful week of attempted to study spelling words last week and after an exhausting and eye-opening day today at work, Kennedy and I got home and I was going through her backpack and what do I find.......
....a PERFECT spelling test. Not only were all 6 words SPELLED right---they were written by Kennedy without any scribe needed!!!!! So of course, we called all those near and dear to us to spread the news and headed out to Dairy Queen with my mom to celebrate with an ice cream celebration. Kennedy already knows 3 of her words for this week since we got our list on Friday so I'm hoping that after all the celebration tonight, she realizes that spelling tests can be very rewarding.
So needless to say, the last month has had its ups and downs, but it looks like things are starting to work out in Kennedy's favor and all our hard work is beginning to show results! Hopefully I'll have more fabulous news to blog about soon. Stay tuned.... :)
First, we had a meeting May 6th to talk about Kennedy's progress last year and the suggestion was brought to her ARC meeting that Kennedy could possibly benefit from an iPad as she has the most trouble with writing--either legibly or without getting tired after just a few words. I was told to work with Kennedy this summer about learning letters on the keyboard and just getting her more comfortable with typing. Well we did that. And despite multiple emails---many even un-returned-- I tried to figure out what was going on with the iPad since the first day of school. While I understand teachers are busy, I can't just sit by and watch my child have such difficulty with school when a piece of technology could be so beneficial for her. I even offered to purchase an iPad if they would help us with the Apps (some of the apps they suggested for Kennedy were big bucks--like $200 bucks-- yikes!) I was told specifically not to buy one and to let the school do it---but no at the school would give me any information on anything. Then, I receive an email stating that Kennedy is going to have to go through an assessment to see what technology would be beneficial for her. Ok, no one said anything about that in MAY. And we had an entire month of May, a summer, and all of August to get any assessments done, but here it is, nearly September, and no progress has been made. So I emailed the new principal about it, and what do you know, the next morning I was receiving phone calls to set up meetings and plans were being made for Kennedy to try out an iPad in another classroom, and so on. We have her team meeting on Thursday so hopefully good things will come from the meeting. I just want Kennedy to be a school that is looking out for her best interests and if it's not her current school, then perhaps it's just not the place she needs to be. While I would hate to pull her from a school that she's been at for 3 years now and away from her friends, I need to do what's best for her in the long run. I'll just have to make some decisions after the meeting on Thursday.
On a happier note, I sent a referral for the Michelle P Waiver for Kennedy last week. Before I had my current job, I had no idea about this program, but I think that it would be FABULOUS for Kennedy. Basically, it's somewhat like the program that my work participates in (and we work with this waiver program also), except the clients can live with their parents/guardians. It would help Kennedy get the services she needed, such as speech, OT, and PT and also as she got older, the program would help her with supported employment and other things to become more independent. She should be getting an assessment scheduled within the next week or two and the approval process takes a LONG time, but it will definitely be worth it if I can get her approved. This is definitely NOT something that is just passed along freely to families of special needs people so if you know someone with special needs people (kids or adults-- mental or developmental disabilities), I'd LOVE to talk to them about this AWESOME program or make sure that they go to the Medicaid website for the Michelle P Waiver.
And here's the best news I've heard in a LONG time........After a long, stressful week of attempted to study spelling words last week and after an exhausting and eye-opening day today at work, Kennedy and I got home and I was going through her backpack and what do I find.......
....a PERFECT spelling test. Not only were all 6 words SPELLED right---they were written by Kennedy without any scribe needed!!!!! So of course, we called all those near and dear to us to spread the news and headed out to Dairy Queen with my mom to celebrate with an ice cream celebration. Kennedy already knows 3 of her words for this week since we got our list on Friday so I'm hoping that after all the celebration tonight, she realizes that spelling tests can be very rewarding.
So needless to say, the last month has had its ups and downs, but it looks like things are starting to work out in Kennedy's favor and all our hard work is beginning to show results! Hopefully I'll have more fabulous news to blog about soon. Stay tuned.... :)
Monday, August 8, 2011
1st grade kick-off
Today was the 3rd day of school and Kennedy is already less than excited about the school year. This morning, she ate very little for breakfast despite our begging, pleading, and threatening. On the way to school she looked at me and said "My belly really hurts." I could tell from her face that it wasn't that she was hungry, but that she really didn't feel good. I told her I would walk her in and take her to the bathroom and stay with her until I knew she was ok. Then she said, "Will you stay with me for writing too?" I told her I didn't think the teacher would let me stay because parents were supposed to drop the kids off and then leave. She was really upset by this. She hates writing because she tires so easily and she has tremors in her hands so penmanship is not her strong point and she gets frustrated.
We got to school and she slowly walked across the parking lot, clingy to my hand and just whimpering. I quickly took her to the bathroom and she didn't really have to go. I walked her to the gym then she begged me to stay with her until her class came out and headed to her room. I think her little tummy was just upset from her nerves and I just hate that for her. In turn, I was feeling sick all day myself because I was worried about her.
Fortunately, I already had a meeting scheduled with her teacher for this afternoon so I talked with him for about 45 minutes about Kennedy. He was very interested in learning about Kennedy and told my mom and I some things he had observed thus far--which were actually good things. She has been raising her hand and answering questions correctly so far. She has been chatty with her friends sitting next to her. He also gave me a couple leads on teachers who tutor kids after school, however I'm not sure that one would be a very good personality fit for Kennedy. The teacher also told me that the kids will have math homework every night, spelling words to learn every week, and some other reading homework throughout the week. I could have just cried right there at his desk. Math is one of the most frustrating subjects for her. Which means homework time will be less than fun in our house. Also, the thought of her learning spelling words AND having to learn to write them when she already has such a hard time writing just makes me sad. I hope to goodness they can get Kennedy's iPad soon so that she can type her homework. Honestly, I don't know how we're going to make it through the school year without some super-powered tutoring....and any other help we can get. Please keep Kennedy in your prayers that we can assemble the right team of mentors/tutors to help her succeed this year.
In other news, we had a rough weekend with the Depakote Sprinkles again. Kennedy gags on whatever food I put them in and makes herself throw up. It's not fun and definitely frustrating because administering it takes FOREVER. Yesterday before church, Kennedy learned that she could just clamp her mouth shut and refuse it all together. I had to hold her head up against the wall and literally force her to take it. I felt awful afterwards, but I knew that we had no choice and not taking it was NOT an option. So last night and this morning I gave her some of the Depakote liquid medicine that I had left over from before all the medication changes and it was much more pleasant. So this morning, I called Vanderbilt and told them that for the sanity of my entire family, they have to put us back on the liquid medicine again. So.......we're back to the original two medicines that we were on before our checkup in early July. Basically we had a month of medication changes for nothing and returned to the medicine that worked the best in the first place. Talk about a waste of time. But Kennedy was MUCH happier with taking two medications tonight since it was in liquid form. When Kennedy is happy---everyone is happy!
So today had some ups and some downs. Hopefully we can get through this school thing. I see MANY sleepless nights ahead......
We got to school and she slowly walked across the parking lot, clingy to my hand and just whimpering. I quickly took her to the bathroom and she didn't really have to go. I walked her to the gym then she begged me to stay with her until her class came out and headed to her room. I think her little tummy was just upset from her nerves and I just hate that for her. In turn, I was feeling sick all day myself because I was worried about her.
Fortunately, I already had a meeting scheduled with her teacher for this afternoon so I talked with him for about 45 minutes about Kennedy. He was very interested in learning about Kennedy and told my mom and I some things he had observed thus far--which were actually good things. She has been raising her hand and answering questions correctly so far. She has been chatty with her friends sitting next to her. He also gave me a couple leads on teachers who tutor kids after school, however I'm not sure that one would be a very good personality fit for Kennedy. The teacher also told me that the kids will have math homework every night, spelling words to learn every week, and some other reading homework throughout the week. I could have just cried right there at his desk. Math is one of the most frustrating subjects for her. Which means homework time will be less than fun in our house. Also, the thought of her learning spelling words AND having to learn to write them when she already has such a hard time writing just makes me sad. I hope to goodness they can get Kennedy's iPad soon so that she can type her homework. Honestly, I don't know how we're going to make it through the school year without some super-powered tutoring....and any other help we can get. Please keep Kennedy in your prayers that we can assemble the right team of mentors/tutors to help her succeed this year.
In other news, we had a rough weekend with the Depakote Sprinkles again. Kennedy gags on whatever food I put them in and makes herself throw up. It's not fun and definitely frustrating because administering it takes FOREVER. Yesterday before church, Kennedy learned that she could just clamp her mouth shut and refuse it all together. I had to hold her head up against the wall and literally force her to take it. I felt awful afterwards, but I knew that we had no choice and not taking it was NOT an option. So last night and this morning I gave her some of the Depakote liquid medicine that I had left over from before all the medication changes and it was much more pleasant. So this morning, I called Vanderbilt and told them that for the sanity of my entire family, they have to put us back on the liquid medicine again. So.......we're back to the original two medicines that we were on before our checkup in early July. Basically we had a month of medication changes for nothing and returned to the medicine that worked the best in the first place. Talk about a waste of time. But Kennedy was MUCH happier with taking two medications tonight since it was in liquid form. When Kennedy is happy---everyone is happy!
So today had some ups and some downs. Hopefully we can get through this school thing. I see MANY sleepless nights ahead......
Monday, August 1, 2011
Accomplishments of the summer
As summer comes to an end this week, I thought I would look back at all the things Kennedy accomplished. While there were lots of things that I was hoping for----like extra work on the stuff she learned in Kindergarten---she did make some big(to us) accomplishments.
1. She learned to climb up on the kitchen counters (with and without a stool)--something that I wasn't sure she'd be able to do with her balance troubles.....
2. She learned how to jump off the counters once she climbed up on them (which is entertainment in itself)
3. She can now open and close the blinds-- which is awesome give the fine motor skills that requires and her struggles with her hands!
4. Kennedy also had blood work done this summer---sitting in the chair by herself! Then had it done two more times with only minimal crying/screaming :)
5. She learned to open her new medicine and pour the sprinkles into her food without losing too many of them
6. She's learned to crack eggs open for breakfast
7. Now, she can get her own ice and water from the refrigerator door
8. At restaurants, she now orders her own food/drink
9. Her manners are improving--significantly
10. She's beginning to test the limits when it comes to things I ask of her-- she's quite the negotiator! (I'm not sure that's really an accomplishment, but at least she doesn't just let people tell her what to do--she stands up for herself!)
11. She has enhanced her comedian skills-- that girl can make anyone laugh!
12. Kennedy can not only open, but also put on her own band aids now (We can now go through a box a day instead of a box in a week..... lol)
13. She has FINALLY got the "w" sound down-pat without having to be reminded to correct herself! (that's a BIGGIE)
14. She's made new friends and GREATLY improved on her social skills
15. She's learning and remembering Bible stories that she's learned in church or that we've read about in our books
16. Kennedy learned to jump off a diving board AND go down the big slides at the water park this summer--by herself!
17. And today, she went up 3 flights of stairs while I went up in the elevator and she beat me to my office!! Yay for those super strong leg muscles!! :)
I'm sure there are probably more accomplishments she's made this summer, but these are what I can think about on the spot. I'm sure to most people these are things that their younger children have done or things that don't really seem like accomplishments. But every single one of these things are tasks that I honestly wasn't sure if she would ever master--at least not for a long time. While we still have work to do and things to learn, we're getting there slowly and that encourages me every single day.
1. She learned to climb up on the kitchen counters (with and without a stool)--something that I wasn't sure she'd be able to do with her balance troubles.....
2. She learned how to jump off the counters once she climbed up on them (which is entertainment in itself)
3. She can now open and close the blinds-- which is awesome give the fine motor skills that requires and her struggles with her hands!
4. Kennedy also had blood work done this summer---sitting in the chair by herself! Then had it done two more times with only minimal crying/screaming :)
5. She learned to open her new medicine and pour the sprinkles into her food without losing too many of them
6. She's learned to crack eggs open for breakfast
7. Now, she can get her own ice and water from the refrigerator door
8. At restaurants, she now orders her own food/drink
9. Her manners are improving--significantly
10. She's beginning to test the limits when it comes to things I ask of her-- she's quite the negotiator! (I'm not sure that's really an accomplishment, but at least she doesn't just let people tell her what to do--she stands up for herself!)
11. She has enhanced her comedian skills-- that girl can make anyone laugh!
12. Kennedy can not only open, but also put on her own band aids now (We can now go through a box a day instead of a box in a week..... lol)
13. She has FINALLY got the "w" sound down-pat without having to be reminded to correct herself! (that's a BIGGIE)
14. She's made new friends and GREATLY improved on her social skills
15. She's learning and remembering Bible stories that she's learned in church or that we've read about in our books
16. Kennedy learned to jump off a diving board AND go down the big slides at the water park this summer--by herself!
17. And today, she went up 3 flights of stairs while I went up in the elevator and she beat me to my office!! Yay for those super strong leg muscles!! :)
I'm sure there are probably more accomplishments she's made this summer, but these are what I can think about on the spot. I'm sure to most people these are things that their younger children have done or things that don't really seem like accomplishments. But every single one of these things are tasks that I honestly wasn't sure if she would ever master--at least not for a long time. While we still have work to do and things to learn, we're getting there slowly and that encourages me every single day.
Friday, July 22, 2011
Growing up.....
In the last week or two, I've realized that my child has definitely developed such a sense of humor. She may struggle with writing and talking, but she has MASTERED the art of making people laugh. Just this week, she has came up with some of the wittiest things that makes it impossible to hold back laughter! I had been told in the past that when she is at school she tries to make the other kids laugh. Maybe she's just trying to fit in and find her niche. I may be partial, but my kid is just down right FUNNY!
Kennedy is also getting very curious about Jesus and has been asking lots of questions. I was never very involved in church aside from my real dad taking me to a super scary church so I'm not always sure of the answers she is looking for when she starts talking about God. I'm often stumped on how simple she needs things broken down so that her little mind can understand religion. Even adults have trouble understanding it, how can a 7 year old grasp it at all? Especially with her black-or-white thinking. For instance, we were listening to a song the other day on the Christian radio station and she looked at me and said "We sing this at Living Hope!!!" She was so excited that she recognized it, but then there was a part that said "I will stand upon the truth." Kennedy looked at me and said "I'll stand on the roof??? That is silly!" I tried to explain to her what the Truth was, but I couldn't put it into 7 year old terms apparently. The next song came on the radio.....Hero by Abandoned. The song starts out talking about Jesus walking the dirty streets. Again, she looked over at me and said, "Well that's just silly! Jesus doesn't have feet!" So I tried to explain to her that Jesus did have feet and he once walked on Earth. (Trying to break it down super simple) Then she asked me, "Well why did he walk everywhere?" And I told her that they didn't have cars when Jesus was on Earth. She seemed ok with that answer for a little bit, then said "Well does he have a car NOW??" Hmmm....the questions never end. This drives me to learn more about the Word so that I can teach her what she wants to know. All I can say is that in the last 6 months, I have attained a greater acceptance for our situation with Kennedy and I don't find myself up so late at night worrying about her. Some may say that religion is a crutch for the week. Honestly, my faith has been a firm foundation since I've switched my focus from the temporary struggles of life on earth to more important, eternal things. Don't get me wrong, I still have days where I question "Why?" but I certainly don't feel so alone knowing God is on our side with this.
Kennedy is also getting very curious about Jesus and has been asking lots of questions. I was never very involved in church aside from my real dad taking me to a super scary church so I'm not always sure of the answers she is looking for when she starts talking about God. I'm often stumped on how simple she needs things broken down so that her little mind can understand religion. Even adults have trouble understanding it, how can a 7 year old grasp it at all? Especially with her black-or-white thinking. For instance, we were listening to a song the other day on the Christian radio station and she looked at me and said "We sing this at Living Hope!!!" She was so excited that she recognized it, but then there was a part that said "I will stand upon the truth." Kennedy looked at me and said "I'll stand on the roof??? That is silly!" I tried to explain to her what the Truth was, but I couldn't put it into 7 year old terms apparently. The next song came on the radio.....Hero by Abandoned. The song starts out talking about Jesus walking the dirty streets. Again, she looked over at me and said, "Well that's just silly! Jesus doesn't have feet!" So I tried to explain to her that Jesus did have feet and he once walked on Earth. (Trying to break it down super simple) Then she asked me, "Well why did he walk everywhere?" And I told her that they didn't have cars when Jesus was on Earth. She seemed ok with that answer for a little bit, then said "Well does he have a car NOW??" Hmmm....the questions never end. This drives me to learn more about the Word so that I can teach her what she wants to know. All I can say is that in the last 6 months, I have attained a greater acceptance for our situation with Kennedy and I don't find myself up so late at night worrying about her. Some may say that religion is a crutch for the week. Honestly, my faith has been a firm foundation since I've switched my focus from the temporary struggles of life on earth to more important, eternal things. Don't get me wrong, I still have days where I question "Why?" but I certainly don't feel so alone knowing God is on our side with this.
Saturday, July 16, 2011
The Broken Diamond
(I am always amazed when stories like this just fall into my lap. It's like a little message from God....)
And with that, the broken diamond was carelessly tossed on the jewelers counter. The jeweler glanced at the broken diamond, then gently set it aside.
At the end of the day the jeweler picked up the broken stone and looked at it more closely.
The diamond was indeed damaged.
But there was a certain something about that broken stone that still held the jewelers eye.
Perhaps that's why the original owner kept it safely in her jewelry box for all those years. How could anyone not appreciate the luminous beauty that still burned so brightly within that diamond, the jeweler wondered?
It's the same with people, the jeweler mused. Children can arrive broken too. In this world there are children who are born with Autism, with Down's Syndrome, with Cerebral Palsy. There are so very many things that can suddenly go wrong, and for no apparent reason. Worse, there are so many people who can't begin to see the worth in these children. Families who would just as soon toss their less than perfect children away, without ever really understanding the life and the joy that continues to glow within them.
And then the jeweler thought....But if those children are treated gently and surrounded by love, their true worth, the beauty of their very souls can shine, for all the world to see.
The jeweler picked up the broken diamond again. To me you are very beautiful my little friend. I will surround you with light and I will give you the care you deserve. And then, perhaps we'll see who among us is able to recognize your true worth.
The jeweler worked long into the night and by the time the sun came up the broken stone had become the centerpiece of a what was earlier a beautifully engraved, but otherwise plain antique gold locket. The broken diamond had been set in the center, and was now surrounded by many smaller diamonds.
The jeweler smiled and spoke aloud to the broken diamond. Alright my little friend. You now have a stable home and you can consider yourself surrounded by a circle of love.
The sparkling locket was placed in a luxurious suede box, which joined the other pieces of jewelry in the wonderfully glittering showcase.
Day after day, customer after customer admired the locket and commented on how amazingly beautiful it was, but when the jeweler handed them a magnifying glass and told them to look at it more closely and showed them that the center diamond was broken, most said they only wanted something perfect.
Never mind little one, the jeweler said to the locket, as each box was being packed away in the big safe every night at closing time. The right person will recognize how special you are.
One day a lovely young woman who was wheeling a child's stroller came into the jewelers store. She looked at the shimmering pieces in each of the showcases but nothing seemed to capture her attention.
All at once her eyes lit up.
Is that a locket? she asked, pointing. The jeweler nodded.
That's the most beautiful locket I've ever seen!, she whispered to herself.
May I see it please?, she asked.
The jeweler took the box containing the locket out of the showcase and handed it to the young mother, while explaining about the broken diamond.
But it's so incredibly beautiful, the young woman sighed, as she admired the locket, I look at this and I don't see any damage, I see only the beauty. And look!, she exclaimed with delight, as she opened the locket, There are two frames! I could put pictures of both my husband and my children inside it!.
Suddenly, the handsome little boy in the stroller made a sound. Not a word exactly, but a sound that obviously conveyed meaning to his mother. The woman immediately knelt down and gave him her full attention. After calming him, she gently and lovingly stroked his face.
The jeweler looked at the little boy. What's his name?, the jeweler inquired.
As she told the jeweler the little boy's name, she smiled happily at her son.
It wasn't as though anything was immediatedly apparent, it was more intuition than anything else that led the jeweler to look more closely at the little boy. After a moment the jeweler understood that this was a special child, who had been been blessed with a mother who recognized the beauty of his soul.
The child's mother stood and turned back to the jeweler. I already know I can't afford this, but please tell me how much it is anyway.
The jeweler checked the tag and told her the price. Ouch!, she sighed, as she reluctantly handed the box back. I'm afraid it's way out of my price range, she smiled ruefully, but thank you so very much for showing it to me. There's just something...something about that locket that reaches right into my heart and calls to me.
The jeweler smiled and replied, You have a good eye for beauty.
Thank you, she laughed.
As the woman turned to go, the jeweler thought for a moment. Leave us your name and address and we'll drop you a note if this piece happens to go on sale. Perhaps your husband will stop by one day and tell us he's decided it would make the perfect gift.
I can always dream, the young woman laughed, as she wrote the requested information on a little card.
There had been so much interest in the beautiful locket that the jeweler knew it would sell very soon. Nevertheless, it was now carefully set aside in a corner of the big safe and never returned to the showcase for sale.
One day a man came into the store and told the jeweler he was looking for something very special for his wife, because he thought his wife was very special herself.
The jeweler smiled and invited the young man to share his thoughts.
Tell me why she's special.
The man spoke with pride and love about his wife, and his little girl, and about their very special little boy. She must be very special indeed, the jeweler said.
And what are your children's names? , the jeweler inquired, and the man told him.
The jeweler asked the man to wait a moment, telling him that perhaps the perfect gift might just be sitting in the big safe.
A moment later the locket was placed on the counter as the jeweler dutifully explained about the broken diamond.
The man picked up the box to get a better look.
I don't see any damage, the man said softly, as he examined the locket, I see only beauty.
It was very clear to the jeweler that this family would forever appreciate the beauty and the sparkling life that shone so brightly in the little broken diamond.
The jeweler had already seen first hand how much the pretty young woman and her husband loved and appreciated their special little boy.
This is wonderful locket, the man sighed. It would make my wife so very happy. How much is it?, he asked.
And the jeweler told him.
That price simply can't be right!, said the man in surprise. Don't get me wrong, he said, with a winsome smile and a twinkle in his eye, I'd be thrilled if that really was the price, but I know it can't be. You'd be giving it away at that price, and I don't want to cheat you.
The jeweler just smiled. No, you won't be cheating me. It's just so happens that your timing was perfect. This locket just went on sale.
Wow!, the man said in amazement. He marveled at his good fortune while the jeweler finished gift wrapping his purchase.
Thank you so much! My wife will absolutely fall in love with this locket!, he called to the jeweler as he cheerfully headed out the door.
The jeweler smiled and silently thought, She already has, son.
The Broken Diamond
by Cynthia Gurin
These are the diamonds I inherited, said the customer. I want them combined into a magnificent piece of jewelry. All except this diamond. It's broken. I don't even know why it was kept with the good jewelry in the first place. If it were perfect, I'd keep it, of course. But it's not. It's broken. So I don't want it. Do whatever you want with it.And with that, the broken diamond was carelessly tossed on the jewelers counter. The jeweler glanced at the broken diamond, then gently set it aside.
At the end of the day the jeweler picked up the broken stone and looked at it more closely.
The diamond was indeed damaged.
But there was a certain something about that broken stone that still held the jewelers eye.
Perhaps that's why the original owner kept it safely in her jewelry box for all those years. How could anyone not appreciate the luminous beauty that still burned so brightly within that diamond, the jeweler wondered?
It's the same with people, the jeweler mused. Children can arrive broken too. In this world there are children who are born with Autism, with Down's Syndrome, with Cerebral Palsy. There are so very many things that can suddenly go wrong, and for no apparent reason. Worse, there are so many people who can't begin to see the worth in these children. Families who would just as soon toss their less than perfect children away, without ever really understanding the life and the joy that continues to glow within them.
And then the jeweler thought....But if those children are treated gently and surrounded by love, their true worth, the beauty of their very souls can shine, for all the world to see.
The jeweler picked up the broken diamond again. To me you are very beautiful my little friend. I will surround you with light and I will give you the care you deserve. And then, perhaps we'll see who among us is able to recognize your true worth.
The jeweler worked long into the night and by the time the sun came up the broken stone had become the centerpiece of a what was earlier a beautifully engraved, but otherwise plain antique gold locket. The broken diamond had been set in the center, and was now surrounded by many smaller diamonds.
The jeweler smiled and spoke aloud to the broken diamond. Alright my little friend. You now have a stable home and you can consider yourself surrounded by a circle of love.
The sparkling locket was placed in a luxurious suede box, which joined the other pieces of jewelry in the wonderfully glittering showcase.
Day after day, customer after customer admired the locket and commented on how amazingly beautiful it was, but when the jeweler handed them a magnifying glass and told them to look at it more closely and showed them that the center diamond was broken, most said they only wanted something perfect.
Never mind little one, the jeweler said to the locket, as each box was being packed away in the big safe every night at closing time. The right person will recognize how special you are.
One day a lovely young woman who was wheeling a child's stroller came into the jewelers store. She looked at the shimmering pieces in each of the showcases but nothing seemed to capture her attention.
All at once her eyes lit up.
Is that a locket? she asked, pointing. The jeweler nodded.
That's the most beautiful locket I've ever seen!, she whispered to herself.
May I see it please?, she asked.
The jeweler took the box containing the locket out of the showcase and handed it to the young mother, while explaining about the broken diamond.
But it's so incredibly beautiful, the young woman sighed, as she admired the locket, I look at this and I don't see any damage, I see only the beauty. And look!, she exclaimed with delight, as she opened the locket, There are two frames! I could put pictures of both my husband and my children inside it!.
Suddenly, the handsome little boy in the stroller made a sound. Not a word exactly, but a sound that obviously conveyed meaning to his mother. The woman immediately knelt down and gave him her full attention. After calming him, she gently and lovingly stroked his face.
The jeweler looked at the little boy. What's his name?, the jeweler inquired.
As she told the jeweler the little boy's name, she smiled happily at her son.
It wasn't as though anything was immediatedly apparent, it was more intuition than anything else that led the jeweler to look more closely at the little boy. After a moment the jeweler understood that this was a special child, who had been been blessed with a mother who recognized the beauty of his soul.
The child's mother stood and turned back to the jeweler. I already know I can't afford this, but please tell me how much it is anyway.
The jeweler checked the tag and told her the price. Ouch!, she sighed, as she reluctantly handed the box back. I'm afraid it's way out of my price range, she smiled ruefully, but thank you so very much for showing it to me. There's just something...something about that locket that reaches right into my heart and calls to me.
The jeweler smiled and replied, You have a good eye for beauty.
Thank you, she laughed.
As the woman turned to go, the jeweler thought for a moment. Leave us your name and address and we'll drop you a note if this piece happens to go on sale. Perhaps your husband will stop by one day and tell us he's decided it would make the perfect gift.
I can always dream, the young woman laughed, as she wrote the requested information on a little card.
There had been so much interest in the beautiful locket that the jeweler knew it would sell very soon. Nevertheless, it was now carefully set aside in a corner of the big safe and never returned to the showcase for sale.
One day a man came into the store and told the jeweler he was looking for something very special for his wife, because he thought his wife was very special herself.
The jeweler smiled and invited the young man to share his thoughts.
Tell me why she's special.
The man spoke with pride and love about his wife, and his little girl, and about their very special little boy. She must be very special indeed, the jeweler said.
And what are your children's names? , the jeweler inquired, and the man told him.
The jeweler asked the man to wait a moment, telling him that perhaps the perfect gift might just be sitting in the big safe.
A moment later the locket was placed on the counter as the jeweler dutifully explained about the broken diamond.
The man picked up the box to get a better look.
I don't see any damage, the man said softly, as he examined the locket, I see only beauty.
It was very clear to the jeweler that this family would forever appreciate the beauty and the sparkling life that shone so brightly in the little broken diamond.
The jeweler had already seen first hand how much the pretty young woman and her husband loved and appreciated their special little boy.
This is wonderful locket, the man sighed. It would make my wife so very happy. How much is it?, he asked.
And the jeweler told him.
That price simply can't be right!, said the man in surprise. Don't get me wrong, he said, with a winsome smile and a twinkle in his eye, I'd be thrilled if that really was the price, but I know it can't be. You'd be giving it away at that price, and I don't want to cheat you.
The jeweler just smiled. No, you won't be cheating me. It's just so happens that your timing was perfect. This locket just went on sale.
Wow!, the man said in amazement. He marveled at his good fortune while the jeweler finished gift wrapping his purchase.
Thank you so much! My wife will absolutely fall in love with this locket!, he called to the jeweler as he cheerfully headed out the door.
The jeweler smiled and silently thought, She already has, son.
Subscribe to:
Posts (Atom)