Yes, that is what I try to remember when I have a pity party. God knows what we can do even if we think we cannot! So I try to get caught up each and every minute and then sometimes say, save it for another day!
I must admit that I have not posted much as of late because I have been in my angry/anxiety stages. Just wished that things would have been caught sooner. If I was more persistent and trusted of my gut! She had so many signs and put together it was not reflux, etc. What a lesson learned. This is why I am researching all methods of brain injury info. Knowledge is power and one has to get all areas of the subject to learn more and determine the best course of treatment. It will not come from anyone else but us parents. Remember this lesson!!! My latest research books are
What to do about your brain-injured child by Glenn Doman
Healthy Brains, Healthy Children by Dr. Coralee Thompson and Dr. Phillip Maffetone
I so hope that I can make a significant dent into these books over the next two weeks. This is a hard journey but so worth it. For instance last night Grace had a memory from about two years ago. This has never happened!!! Thank you God. So I write this so when I do not want to give/struggle with her for her supplements, therapies, stretches, etc. I know it works and it is so important. How else could I live with myself If I cannot look her in the eye that day (and it will happen) when she says why me Mommy and how it happened because of my genetic blood disorder!!! I can be confident in letting her know that I did everything that could be done. That to me is the trust and unconditional love that each of us deserve and desire from our parents! If you are reading this and you did not get it please feel comforted that you can have it right now just close your eyes and imagine our Heavenly Father scooping your up into his Awesome Arms and holding you tight!!
So my anxiety comes from not being able to read enough fast enough, research enough into schools treatments and of course do not forget the endless laundry, house cleaning and cooking, etc.
Grace is AMAZING! Every time that I write that I remember how her name came to us. We picked the name Grace for two different reasons. First, the song Power Windows by Billy Falcon and second the book that changed my life and banished my false guilt, Grace Walk by Steve McVey.
Grace had her third cast put on last Thursday. She only increased flexion by about 3 or 5 degrees so we will probably have a fourth cast. She goes to pick up her self-designed AFO (articulating ankle foot orthodotic) on Wednesday. Yes, she designed it with butterflies with purple background and pink straps! Then a couple of hours after that she gets the new cast put on.
I go to see Dr. Rabin to get my results on my thyroid panel/hormones on Thursday, yes Christmas Eve. We are hoping this will give us more information which is power! Then we are hoping to go ride the Pink Pig down at Lenox. Yes, we are finally going to do the Atlanta Christmas tradition. Then Christmas eve evening at my Mom's with my wonderful sisters, husband and nephew coming into town.
Merry Christmas!
Tuesday, December 22, 2009
Monday, December 14, 2009
Finally in the Christmas spirit
Ok, so I am not a scrooge but it took me a bit longer to get in the mood for Christmas this year. Probably because I have just started to decorate the inside of the house. That always gets me in the mood! Looking at the first ornaments of our marriage, and of course of the girls first ornaments, too. I am so happy that my wonderful husband is going to do most of the Christmas/birthday shopping this month, yes, that is what I wrote. I so need his help, and he so gracious committed!
Grace is doing great! We took her first cast off on Wednesday. She had her fitting for her articulating ankle foot orthodic which she will wear on her right leg after the serial castings. She increased her flexion by five degrees which is the norm! Happy Happy! She is quite the negotiator, all ready! When we were with the therapist to put her second cast on she told them, "You know I can walk on my heels really good now, want to see? Here I will show you!" She kept going on and on until she realized she was getting the second cast. No tears or complaints of pain, just a bit of whining and cuddling with Mommy.
We take off her cast this Wednesday and she will get her third cast put on Thursday afternoon.
Grace is doing great! We took her first cast off on Wednesday. She had her fitting for her articulating ankle foot orthodic which she will wear on her right leg after the serial castings. She increased her flexion by five degrees which is the norm! Happy Happy! She is quite the negotiator, all ready! When we were with the therapist to put her second cast on she told them, "You know I can walk on my heels really good now, want to see? Here I will show you!" She kept going on and on until she realized she was getting the second cast. No tears or complaints of pain, just a bit of whining and cuddling with Mommy.
We take off her cast this Wednesday and she will get her third cast put on Thursday afternoon.
Tuesday, December 8, 2009
Poem
I saw this on the internet last night.
Ode to Special Moms
Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for
propagation with great care and deliberation. As he observes, he instructs
his angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter,
patron saint, Cecilia.
"Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to
profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped
child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a handicapped child to a mother who does
not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wear off, she'll
handle it.
"I watched her today. She has that feeling of self and independence that is
so rare and so necessary in a mother. You see, the child I'm going to give
her has his own world. She has to make it live in her world, and that's not
going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just
enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word.' She will never consider a
'step' ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle and know it! When she describes a tree or a sunset
to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see . . . ignorance,
cruelty, prejudice . . . and allow her to rise above them. She will never
be alone. I will be at her side every minute of every day of her life,
because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."
- Erma Bombeck, May, 1980 ↑
Ode to Special Moms
Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for
propagation with great care and deliberation. As he observes, he instructs
his angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter,
patron saint, Cecilia.
"Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to
profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped
child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a handicapped child to a mother who does
not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wear off, she'll
handle it.
"I watched her today. She has that feeling of self and independence that is
so rare and so necessary in a mother. You see, the child I'm going to give
her has his own world. She has to make it live in her world, and that's not
going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just
enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word.' She will never consider a
'step' ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle and know it! When she describes a tree or a sunset
to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see . . . ignorance,
cruelty, prejudice . . . and allow her to rise above them. She will never
be alone. I will be at her side every minute of every day of her life,
because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised midair.
God smiles. "A mirror will suffice."
- Erma Bombeck, May, 1980 ↑
Friday, December 4, 2009
My Inspiration for a Lifetime
Grace seems to be adjusting to the cast extremely well now. Yes, the first day and night were trying on her but no complaints now or a mention of it! Children are just so resilient. That is why I want to continue to see everything through the eyes of a child!!
It was a pleasant visit to Thomas Eye Group. The girls kept themselves entertained for the entire three hours so I am so very impressed and proud of them. Grace's vision is doing great and no need for a change of lens strength at this time. How about my little overachiever! Dr. Lipsky was certain that she would need changes at least once a year till teen years! Well, not my sweet baby Grace it has been one year on the same strength. I know God and Dr. Grande working and praying together (with eye muscle exercises) made this so!
Now I am going to tackle laundry or better yet climb the mountain of clothes to fold and put away, then start decorating!! Have a beautiful weekend, we might get a dusting of snow tomorrow!
Please take the time to read the below, condensed email and see the brief yet moving video, it will be worth it.
[[Tiffany Norris sent a message to the members of "Ten for Tiffany."
--------------------
Subject: What a Merry Christmas!
Hello friends! We are in the Christmas spirit....how about you??? We have received one of the BEST Christmas gifts anyone could ever want. We have experienced & seen with our very own eyes our little girl achieving more than we ever thought possible!
It's been 4 months since Tiffany had her surgery in St.Louis & what a difference a few months make. I'm beginning to have trouble remembering the "old" Tiffany. I came across some videos yesterday that I had taken before her surgery & I couldn't help but cry. Watching her struggle to bend her legs....unable to go up & down steps properly.....unable to walk with her armcrutches.....unable to take proper steps with her walker....watching her little legs cross inward with every step....watching her step on her own feet when she walked....watching her drag her legs behind her when she crawled....the list goes on & on. PRAISE GOD she is freed from all of this! It's been an absolute miracle what has taken place over these last four months & the blessings & positive changes just keep coming....
This year I decided not to send out Christmas cards...or Christmas letters since the majority of people we know follow our lives either on facebook or carepages. As a special Christmas treat & a token of our appreciation to you all for your prayers, financial support & encouragement, we have made a little video showing you Tiffany's progress over the last 4 months. The song we used is "What Faith Can Do" by Kutless.
http://www.youtube.com/10fortiffany
From the first time TIffany heard this song on the radio she said, "MOM! This song is about me!! They are talking about when I fall & about me getting stronger!" From that point on, we have claimed this song as "Tiffany's song" & she knows almost every word to it!
In January of 2009, our pastor gave a sermon on "Asking Big". Many times we pray for small things to happen in our lives or in the lives of others. He encouraged us that day to really dig deep & ask for something BIG....something that only God could have the power to fulfill. I remember as I sat their & listened, tears constantly streamed down my face....my insides shook.....my hands trembled....it was like he was talking to me & no one else. I KNEW what Steven & I's "ASK BIG" was going to be.....for our little girl to walk. That was something the doctor's told us that Tiffany may never be able to do on her own. However, that day, we put our complete faith & trust in our God and truly believed that He could make this happen. A few months after hearing that sermon & "asking BIG", we learned about Dr. Park & the selective dorsal rhizotomy procedure that he has essentially perfected. Our prayers were being answered & still are today. Never in our wildest dreams did we think Tiffany would be walking with her armcrutches less than a year later. Never in our wildest dreams did we have the assurance that she would one day be walking ON HER OWN without ANYTHING!
While we still have a long road ahead that involves ALOT of hard work, we are anticipating everyday with such excitement because it means we are one day closer to seeing our dreams become a reality! We serve an amazing God!
From our family to yours, we hope that every one of you have an amazing Christmas season & that we would remember what Christmas is all about....the birth of our Savior who gave His life for each one of us so that we could have hope in the future! If you've never experienced this "hope" that I talk about, I would love to share more so that you too can experience the best Christmas ever.
Before I end, I wanted to remind you all that Tiffany will be on TV this Sunday (Dec.6th) at 1:00pm. There is a telethon for United Rehabilitation Services (where she receives therapy) & we were asked to come be apart of it. If you're in the area, please tune in to channel 2 (wdtn) & support this great cause! If you're out of our area, you may be able to go to http://www.facebook.com/l/14bb1;www.wdtn.com & see clips of the telethon (I'm not sure if they post this on their website or not).
We love you all; thank you for letting us share this journey with you!
Steven & Terra
ps-don't forget to check out our latest video on http://www.facebook.com/l/14bb1;www.youtube.com/10fortiffany ]]
It was a pleasant visit to Thomas Eye Group. The girls kept themselves entertained for the entire three hours so I am so very impressed and proud of them. Grace's vision is doing great and no need for a change of lens strength at this time. How about my little overachiever! Dr. Lipsky was certain that she would need changes at least once a year till teen years! Well, not my sweet baby Grace it has been one year on the same strength. I know God and Dr. Grande working and praying together (with eye muscle exercises) made this so!
Now I am going to tackle laundry or better yet climb the mountain of clothes to fold and put away, then start decorating!! Have a beautiful weekend, we might get a dusting of snow tomorrow!
Please take the time to read the below, condensed email and see the brief yet moving video, it will be worth it.
[[Tiffany Norris sent a message to the members of "Ten for Tiffany."
--------------------
Subject: What a Merry Christmas!
Hello friends! We are in the Christmas spirit....how about you??? We have received one of the BEST Christmas gifts anyone could ever want. We have experienced & seen with our very own eyes our little girl achieving more than we ever thought possible!
It's been 4 months since Tiffany had her surgery in St.Louis & what a difference a few months make. I'm beginning to have trouble remembering the "old" Tiffany. I came across some videos yesterday that I had taken before her surgery & I couldn't help but cry. Watching her struggle to bend her legs....unable to go up & down steps properly.....unable to walk with her armcrutches.....unable to take proper steps with her walker....watching her little legs cross inward with every step....watching her step on her own feet when she walked....watching her drag her legs behind her when she crawled....the list goes on & on. PRAISE GOD she is freed from all of this! It's been an absolute miracle what has taken place over these last four months & the blessings & positive changes just keep coming....
This year I decided not to send out Christmas cards...or Christmas letters since the majority of people we know follow our lives either on facebook or carepages. As a special Christmas treat & a token of our appreciation to you all for your prayers, financial support & encouragement, we have made a little video showing you Tiffany's progress over the last 4 months. The song we used is "What Faith Can Do" by Kutless.
http://www.youtube.com/10fortiffany
From the first time TIffany heard this song on the radio she said, "MOM! This song is about me!! They are talking about when I fall & about me getting stronger!" From that point on, we have claimed this song as "Tiffany's song" & she knows almost every word to it!
In January of 2009, our pastor gave a sermon on "Asking Big". Many times we pray for small things to happen in our lives or in the lives of others. He encouraged us that day to really dig deep & ask for something BIG....something that only God could have the power to fulfill. I remember as I sat their & listened, tears constantly streamed down my face....my insides shook.....my hands trembled....it was like he was talking to me & no one else. I KNEW what Steven & I's "ASK BIG" was going to be.....for our little girl to walk. That was something the doctor's told us that Tiffany may never be able to do on her own. However, that day, we put our complete faith & trust in our God and truly believed that He could make this happen. A few months after hearing that sermon & "asking BIG", we learned about Dr. Park & the selective dorsal rhizotomy procedure that he has essentially perfected. Our prayers were being answered & still are today. Never in our wildest dreams did we think Tiffany would be walking with her armcrutches less than a year later. Never in our wildest dreams did we have the assurance that she would one day be walking ON HER OWN without ANYTHING!
While we still have a long road ahead that involves ALOT of hard work, we are anticipating everyday with such excitement because it means we are one day closer to seeing our dreams become a reality! We serve an amazing God!
From our family to yours, we hope that every one of you have an amazing Christmas season & that we would remember what Christmas is all about....the birth of our Savior who gave His life for each one of us so that we could have hope in the future! If you've never experienced this "hope" that I talk about, I would love to share more so that you too can experience the best Christmas ever.
Before I end, I wanted to remind you all that Tiffany will be on TV this Sunday (Dec.6th) at 1:00pm. There is a telethon for United Rehabilitation Services (where she receives therapy) & we were asked to come be apart of it. If you're in the area, please tune in to channel 2 (wdtn) & support this great cause! If you're out of our area, you may be able to go to http://www.facebook.com/l/14bb1;www.wdtn.com & see clips of the telethon (I'm not sure if they post this on their website or not).
We love you all; thank you for letting us share this journey with you!
Steven & Terra
ps-don't forget to check out our latest video on http://www.facebook.com/l/14bb1;www.youtube.com/10fortiffany ]]
Thursday, December 3, 2009
Beautiful Day
Wednesday afternoon Grace had her first cast put on. Her contracture is at -5degrees and the goal/need is to get her flexion to 15degrees so her foot needs to flatten by 20degrees. This is what the CP does. I will try to post some pictures later. So Grace got the 'Super Boot' on and was in a lot of discomfort. Even though the Botox paralized the gastrocnemius, plantaris and soleus musles. The other calf musles (politeus, flexor digitorum longus, the flexor hallucious longus, the fibularis longus, fibularis brevis and the tibialis) did not get much use due to the contracture of the first mentioned musles! Whew, that is a finger twister! So I believe that those musles got shorter so the stretching is very uncomfortable especially in a fixed stretch.
Grace is so tough on the outside, then once we got in the car and we were about five minutes away the tears started streaming down her face and she just lost it. She just cried that it hurt. I explained to Grace that Mommy and Daddy would never have taken her to get the 'Super Boot' put on unless it was for the best and needed to happen. I reminded her that she could do all things through God who gives her strength and once all this was over with she would be able to run faster and ride her big girl bike and so on.
She had a rough night, but we got through it and all is great today. A big thank you to Carole and Carly at CHOA in Alpharetta! They are so wonderful to us!
Have a beautiful day!
Grace is so tough on the outside, then once we got in the car and we were about five minutes away the tears started streaming down her face and she just lost it. She just cried that it hurt. I explained to Grace that Mommy and Daddy would never have taken her to get the 'Super Boot' put on unless it was for the best and needed to happen. I reminded her that she could do all things through God who gives her strength and once all this was over with she would be able to run faster and ride her big girl bike and so on.
She had a rough night, but we got through it and all is great today. A big thank you to Carole and Carly at CHOA in Alpharetta! They are so wonderful to us!
Have a beautiful day!
Sunday, November 29, 2009
Happy Thanksgiving
We hope that everyone had a wonderful Thanksgiving. It was quiet and relaxing which is just what we needed. Instead of the traditional turkey I made a roast beef tenderloin with cranberry-red wine sauce. It was wonderful. Also, made a pumpkin pie with the cookies that Grace can eat for the crust! Very yummy!
I went to the hand surgeon and he aspirated the volar ganglion cyst and then injected it with cortisone. My first cortisone injection. It hurt and continued to hurt for about two days, then great no pain. The area is still bigger and if it does not go down in two weeks he will proceed with a surgery.
I have to start my first insurance appeal. Yes, my doctor did a full panel on my thyroid, being that I am so exhausted, and there is a history of hypothyroidism in my family. Well, the EOB stated no benefits for cosmetic surgery! I did not know that blood work could be cosmetic, HA! So $1,500.00, is the amount.
However, the exciting news on the court is that Saturday morning Grace road her Big Wheel and tricycle successfully for the first time. Yes, she was able to pedal, did not get frustrated and quit for quite some time. I got so emotional I had to go inside for a bit, you know to gather my emotions! Wow, what an accomplishment! It was futile all the efforts that we made in the past and then it was just like a switch was flipped, so wonderful.
Grace has been walking on her heels a lot now and if she is on her toes it is barely, not like before on her tippy toes. She does have to retrain her brain and practice with her right foot/leg. When she walks flat foot her toes are outward and she does not bend her knee. It is difficult but she knows that she can do all things through God who gives her strength. She ate some food that was not apart of her diet and we are seeing the results all ready. Yes, she is whining a lot, and disconnected and rebellious. It is amazing, and I would not of believed it if I did not see it for myself. When she is on her diet she is fun loving energetic, determined and happy.
I started to get a nasty cold last night and stayed in bed all day today. Gabrielle took a nap and Chris took Grace out on the town. They came back with Band Hero. Unbelievable! I walked downstairs to Grace playing the drums! Amazing! Believe it or not, this is therapy for her. It is the same principal as her Bp2 program, with the interactive metronome.
We go to A Healing Place tomorrow to get the results for her OAT test. Then Wednesday afternoon, she gets her first cast of three. Friday is her eye appointment. Pray for me and the doctor that he has a better attitude this visit and I am patient with him!!!
Going to rest up again and get ready for another week!
I went to the hand surgeon and he aspirated the volar ganglion cyst and then injected it with cortisone. My first cortisone injection. It hurt and continued to hurt for about two days, then great no pain. The area is still bigger and if it does not go down in two weeks he will proceed with a surgery.
I have to start my first insurance appeal. Yes, my doctor did a full panel on my thyroid, being that I am so exhausted, and there is a history of hypothyroidism in my family. Well, the EOB stated no benefits for cosmetic surgery! I did not know that blood work could be cosmetic, HA! So $1,500.00, is the amount.
However, the exciting news on the court is that Saturday morning Grace road her Big Wheel and tricycle successfully for the first time. Yes, she was able to pedal, did not get frustrated and quit for quite some time. I got so emotional I had to go inside for a bit, you know to gather my emotions! Wow, what an accomplishment! It was futile all the efforts that we made in the past and then it was just like a switch was flipped, so wonderful.
Grace has been walking on her heels a lot now and if she is on her toes it is barely, not like before on her tippy toes. She does have to retrain her brain and practice with her right foot/leg. When she walks flat foot her toes are outward and she does not bend her knee. It is difficult but she knows that she can do all things through God who gives her strength. She ate some food that was not apart of her diet and we are seeing the results all ready. Yes, she is whining a lot, and disconnected and rebellious. It is amazing, and I would not of believed it if I did not see it for myself. When she is on her diet she is fun loving energetic, determined and happy.
I started to get a nasty cold last night and stayed in bed all day today. Gabrielle took a nap and Chris took Grace out on the town. They came back with Band Hero. Unbelievable! I walked downstairs to Grace playing the drums! Amazing! Believe it or not, this is therapy for her. It is the same principal as her Bp2 program, with the interactive metronome.
We go to A Healing Place tomorrow to get the results for her OAT test. Then Wednesday afternoon, she gets her first cast of three. Friday is her eye appointment. Pray for me and the doctor that he has a better attitude this visit and I am patient with him!!!
Going to rest up again and get ready for another week!
Thursday, November 19, 2009
Wednesday, November 18, 2009
Just the Facts
Ok, all of my tests came back great! The barium swallow showed reflux, which is why I had laryngitis and then a raspy voice. The CT scan showed no infections, tumors or anything else bad. The chest x-ray was normal. I went off of the Nexium. I had AWFUL headaches all day long every day with nausea. I have now started on the Pepcid and if needed the Prilosec which is great because they are more affordable with our insurance than the Nexium, ouch!
Speaking of ouches, the BOTOX injections are very very expensive. We are thankful that our insurance approved the use of it and will pay 80%. If she needs another injection in 4 -6 months we will need to seek approval again. So she should start to notice some changes from her two injections on the side of her calf in the next two to three days. The purpose of the injections is to basically paralize the muscle(s) that is in contracture which are the Gastrocnemius and Soleus muscles. This will enable the other muscles that have become weakened due to the contractures to be able to work and get stronger. Her two injections were on each side of that area. Overall she did great. I just finished some stretching with her. I love how she has begun to let me know EXACTLY what she is feeling. I was concerned that she was continuing to keep things inside. However, during the stretch she told me to stop touching her right NOW. It took everything that I had not to smile and laugh because it was so beautiful for her to express herself!!
Now regarding her MRI results she has damage in the periventricular area or gliosis (scarring) of the ventricles which is in the deep white matter (basically in the middle of her brain. It is so minor compared to what probably should have happened. Once again, Our God is ALWAYS FAITHFUL! Now with her mild CP remember it will not progress, so she is awesome and on the right track. We will always need to do the stretching and exercises and during growth spurts it will be a wait and see if more injections or serial casting or AFO's need to happen.
Ventricle Images
Regarding Gabrielle who is 22 months old. She goes to the ENT on Friday morning to see if she is still testing positive for STREP. We finished her fourth round of antibiotics on Sunday and she has only sneezed a couple of times and seems great, a first! I have been pumping her with Might-a-Mins Probiotics daily, I know this has helped. If she is Negative or just a carrier we will be fine. If positive another Edwards will be having surgery this year!
OK, now here is where I need help if anyone wants and can help! As I have stated before this is not where my gifts lie! I am the EMT that gets them stable and sends them off. I am terrible at the stretches and therapy. All I can do is to find the resources. So I am looking for any and all resources that have the gift of this kind of care, written ideas, or anything that I am not thinking about.
Also, if anyone knows of a great book with helpful ideas like, using rubber bands on the child's foot to help them learn how to ride a tricycle. I realize that when I have so much going on I do not allow my mind to get creative to tackle and conquer these obstacles in our way. If we are not striving to reach our full potential each day then we are being stagnant and dying right?!
Yes, and once again, Kick-counts saved Grace's life and God made it a miracle. She was just hours away from being still born. So please share this story and encourage all pregnant women to do their kick-counts. Also, if you have a family history of strokes or blood clots and you are pregnant or want to become pregnant or have had miscarriages be aggressive in getting your blood tested for any clotting disorders. Thank you for listening and helping our brothers and sisters in preventing this from happening again. Good night!
audraedwards1@gmail.com
Speaking of ouches, the BOTOX injections are very very expensive. We are thankful that our insurance approved the use of it and will pay 80%. If she needs another injection in 4 -6 months we will need to seek approval again. So she should start to notice some changes from her two injections on the side of her calf in the next two to three days. The purpose of the injections is to basically paralize the muscle(s) that is in contracture which are the Gastrocnemius and Soleus muscles. This will enable the other muscles that have become weakened due to the contractures to be able to work and get stronger. Her two injections were on each side of that area. Overall she did great. I just finished some stretching with her. I love how she has begun to let me know EXACTLY what she is feeling. I was concerned that she was continuing to keep things inside. However, during the stretch she told me to stop touching her right NOW. It took everything that I had not to smile and laugh because it was so beautiful for her to express herself!!
Now regarding her MRI results she has damage in the periventricular area or gliosis (scarring) of the ventricles which is in the deep white matter (basically in the middle of her brain. It is so minor compared to what probably should have happened. Once again, Our God is ALWAYS FAITHFUL! Now with her mild CP remember it will not progress, so she is awesome and on the right track. We will always need to do the stretching and exercises and during growth spurts it will be a wait and see if more injections or serial casting or AFO's need to happen.
Ventricle Images
Regarding Gabrielle who is 22 months old. She goes to the ENT on Friday morning to see if she is still testing positive for STREP. We finished her fourth round of antibiotics on Sunday and she has only sneezed a couple of times and seems great, a first! I have been pumping her with Might-a-Mins Probiotics daily, I know this has helped. If she is Negative or just a carrier we will be fine. If positive another Edwards will be having surgery this year!
OK, now here is where I need help if anyone wants and can help! As I have stated before this is not where my gifts lie! I am the EMT that gets them stable and sends them off. I am terrible at the stretches and therapy. All I can do is to find the resources. So I am looking for any and all resources that have the gift of this kind of care, written ideas, or anything that I am not thinking about.
Also, if anyone knows of a great book with helpful ideas like, using rubber bands on the child's foot to help them learn how to ride a tricycle. I realize that when I have so much going on I do not allow my mind to get creative to tackle and conquer these obstacles in our way. If we are not striving to reach our full potential each day then we are being stagnant and dying right?!
Yes, and once again, Kick-counts saved Grace's life and God made it a miracle. She was just hours away from being still born. So please share this story and encourage all pregnant women to do their kick-counts. Also, if you have a family history of strokes or blood clots and you are pregnant or want to become pregnant or have had miscarriages be aggressive in getting your blood tested for any clotting disorders. Thank you for listening and helping our brothers and sisters in preventing this from happening again. Good night!
audraedwards1@gmail.com
1st treatment in a few hours
So as I was driving home from taking the girls to preschool I prayed Lord, please take this anxiety away so I can have some kind of discernment on where it is coming from. Our Lord is never failing. I know that my anxiety is not from the decision to go ahead with the recommended Botox injection today, BUT from insecurity, doubt and basically fear that I am making the wrong decision or that I am not using God's wisdom.
I guess this is going to continue to happen because this is the PERFECT way to mess with a Mommy, huh. So I am going to continue to stay strong and keep putting the Armor of God on each morning with my girls to keep all those nasty fears away! Because I know that my gifts are not in this particular area but as I know I can and will find the resources that are needed.
Please pray that the preparation for Grace is what she needs and pray especially that the neurologists has Our Lord's perfect hands and discernment with him guiding him to the proper location and amounts for these injections. Also, please pray that the injection stays in the needed area to get the needed flexion and no side affects to harm sweet baby Grace.
I guess this is going to continue to happen because this is the PERFECT way to mess with a Mommy, huh. So I am going to continue to stay strong and keep putting the Armor of God on each morning with my girls to keep all those nasty fears away! Because I know that my gifts are not in this particular area but as I know I can and will find the resources that are needed.
Please pray that the preparation for Grace is what she needs and pray especially that the neurologists has Our Lord's perfect hands and discernment with him guiding him to the proper location and amounts for these injections. Also, please pray that the injection stays in the needed area to get the needed flexion and no side affects to harm sweet baby Grace.
Friday, November 13, 2009
Our amazing Grace and her miraculous story of survival!
Chris and I had deep convicted feeling about keeping the possible baby names to ourselves only when we were expecting Grace. We always felt peace in knowing that when we looked upon our child's face for the very first time we would know. Oh, yes, I knew! It was the briefest of all moments but I knew that she was our Grace Marie.
I believe that God reveals Himself at the perfect moments and in his Utmost Highest ways when we need Him most, and, do we not need it most, when we feel that we have all things, moving the way that they should be, albeit sometimes slow, with detours or blazing fast moments but with no surprise twists or turns. Well, this is how I felt the morning of July 16th, 2005.
Chris and I just moved into our new home, our current home, the weekend of July 1st. So yes, we were unpacking and doing all those things. I woke up that beautiful and hot Saturday morning and tried to once again get into the mood to unpack and organize. It was futile, I just wanted to go shopping. So I headed down to my favorite store, The Container store, to get some all important things, right, to organize the house better! I remember thinking that our sweet little one was not moving very much that day. I usually awoke to her kicking and I absolutely loved to lay in bed on my side and enjoy feeling her moving. I do not recall her moving that morning and then I did not feel her moved the 35 miles down GA-400 to the store. A mental note that I put in the back of my head.
Well, of course I had an amazing time finding all the things that I needed. Then I decided to head to Sam's club and get some Dreft and other things before it got to hot and before I got any bigger to lift these things. Once again I did not feel our little one moving. I bought some lemonaide and a lemon cake so I could do a sweet/kick test when I got home (well okay they just looked good and I wanted them). Still no movement so once we got everything in the house, Chris went back to painting the nursery, yellow, and I sat down to read my book about kick counts. I felt that our baby was probably getting bigger and that is why I did not feel much however, I felt that I needed to make sure. I drank the lemonaide and ate a piece of that lemon cake. Ugh, it was all so sweet that had to make anyone move. Well, I got two or three very soft movements in 45 minutes. I waited 15 more minutes, nothing, ate and drank some more and then within 30 minutes I got three or four more soft movements. I called my OB's office, and Dr. Soufi, called me back as she was on-call. She told me to come on down and they would put me on the monitor. I went up and told Chris and he was a little covered in paint being that he was painting the ceiling for me!!! He said, do I have time to take a shower, I said oh, yeh, they are just going to put me on the monitor, but make it a quick one.
Chris and I just moved into our new home, our current home, the weekend of July 1st. So yes, we were unpacking and doing all those things. I woke up that beautiful and hot Saturday morning and tried to once again get into the mood to unpack and organize. It was futile, I just wanted to go shopping. So I headed down to my favorite store, The Container store, to get some all important things, right, to organize the house better! I remember thinking that our sweet little one was not moving very much that day. I usually awoke to her kicking and I absolutely loved to lay in bed on my side and enjoy feeling her moving. I do not recall her moving that morning and then I did not feel her moved the 35 miles down GA-400 to the store. A mental note that I put in the back of my head.
Well, of course I had an amazing time finding all the things that I needed. Then I decided to head to Sam's club and get some Dreft and other things before it got to hot and before I got any bigger to lift these things. Once again I did not feel our little one moving. I bought some lemonaide and a lemon cake so I could do a sweet/kick test when I got home (well okay they just looked good and I wanted them). Still no movement so once we got everything in the house, Chris went back to painting the nursery, yellow, and I sat down to read my book about kick counts. I felt that our baby was probably getting bigger and that is why I did not feel much however, I felt that I needed to make sure. I drank the lemonaide and ate a piece of that lemon cake. Ugh, it was all so sweet that had to make anyone move. Well, I got two or three very soft movements in 45 minutes. I waited 15 more minutes, nothing, ate and drank some more and then within 30 minutes I got three or four more soft movements. I called my OB's office, and Dr. Soufi, called me back as she was on-call. She told me to come on down and they would put me on the monitor. I went up and told Chris and he was a little covered in paint being that he was painting the ceiling for me!!! He said, do I have time to take a shower, I said oh, yeh, they are just going to put me on the monitor, but make it a quick one.
Now let me explain my mindset here, my mother had five children all vaginally, the fifth was all-natural and all of the babies were born past their due dates, some three weeks past the due dates as my birth was. So of course I just assumed that my child would be born at least a week past my due date which was, August 16th, 2005. I was also planning on a natural delivery. We hired a dula, Penny Gilchrist, and we were just checking things off of our to-do list and moving right along, we thought!
So I grabbed my cell phone and purse and off to Northside we go.(yes, oh, so naive).
Today is November 13, 2009, at 7:30 pm. I want to get this post done for the blog is so therapeutic for me and it will answer many peoples questions without me crying through it! Grace will probably read this one day, so I will finish it now.
OH, on a side note, the picture below is of Grace in NICU POD A, at N'side Main. She is 3 days old in this picture. She was very sick and it showed in her earlier pictures, so I want to keep those close to my heart and private for now...
Once I am on the monitor we do another sugar/kick test. By this time I never wanted anything sweet to eat, again. She barely moved, they said I was having contractions but I didn't realize it, or feel it. I was not in labor. Her heart rate was very low around 110 when it should of been around 160.
Here is where I get chills because as I type I know that is when God had us all in his arm's, holding us tight against His chest, keeping us from all harm with peace and contentment.
There was a bad thunderstorm that night which delayed Dr. Soufi in getting to the hospital. Our RN was a traveling RN from California who was actually a mid-wife. She was very attentive to us and knew my faith and desires for a natural delivery. She reached in close to me with so much love and concern letting me know that if I was her patient she would say, your baby is in trouble we need to get her now. Then everything went so fast and effiicient, the blood, the prep, the epi-dural and then Dr. Soufi arrived, and I was rushed into surgery. Now that I have had two c-sections, I realize how fast the first one was, very fast until Grace came out. I will never forget how still and quiet it was, except for all the machines and then Apgar of 1, resusitation, then a while later Apgar of 8, thank you, Jesus, 3 pounds and 13 ounces, 16.5" at 11:42 pm, on July 16th, 2005. I got to see Grace for a second or two and then she was rushed to the NICU. I begged Chris to stay with her and take care of her no matter what. Yes, very dramatic, I know, but excuse me, we did not know why this happened and why she was so small. I was not sure that I would see them again!
Today is November 13, 2009, at 7:30 pm. I want to get this post done for the blog is so therapeutic for me and it will answer many peoples questions without me crying through it! Grace will probably read this one day, so I will finish it now.
OH, on a side note, the picture below is of Grace in NICU POD A, at N'side Main. She is 3 days old in this picture. She was very sick and it showed in her earlier pictures, so I want to keep those close to my heart and private for now...
Once I am on the monitor we do another sugar/kick test. By this time I never wanted anything sweet to eat, again. She barely moved, they said I was having contractions but I didn't realize it, or feel it. I was not in labor. Her heart rate was very low around 110 when it should of been around 160.
Here is where I get chills because as I type I know that is when God had us all in his arm's, holding us tight against His chest, keeping us from all harm with peace and contentment.
There was a bad thunderstorm that night which delayed Dr. Soufi in getting to the hospital. Our RN was a traveling RN from California who was actually a mid-wife. She was very attentive to us and knew my faith and desires for a natural delivery. She reached in close to me with so much love and concern letting me know that if I was her patient she would say, your baby is in trouble we need to get her now. Then everything went so fast and effiicient, the blood, the prep, the epi-dural and then Dr. Soufi arrived, and I was rushed into surgery. Now that I have had two c-sections, I realize how fast the first one was, very fast until Grace came out. I will never forget how still and quiet it was, except for all the machines and then Apgar of 1, resusitation, then a while later Apgar of 8, thank you, Jesus, 3 pounds and 13 ounces, 16.5" at 11:42 pm, on July 16th, 2005. I got to see Grace for a second or two and then she was rushed to the NICU. I begged Chris to stay with her and take care of her no matter what. Yes, very dramatic, I know, but excuse me, we did not know why this happened and why she was so small. I was not sure that I would see them again!
Then a long silence, but so much peace, more peace than I could of imagined. It felt like an eternity before I was brought into recovery. Dr. Soufi and the others kept saying I can't believe how small she is with so much concern. Once in recovery, the Neonatologist checked in with us, gave us her first picture and informed us that she was a very sick little girl.
My body was so tired and stressed that I do not remember much until the next day, Sunday morning, which was the last day of our birthing class when they were going to go over c-sections and if something goes wrong! God's timing is perfect I might have been freaking out if I had that class before, we will never know!
They told me that I could not go see Grace until I got off the epi-dural and could do a couple of others things that I had to do, so I tried hard, did not succeed the first time but was so determined to try again within the hour. Now off to see her. She was so tiny and so swollen and still we could barely see her skin on her face because of the respirator. We could not touch her except to cup her head without moving because any movement would be painful.
On day 4 at the very last hours that I could stay my blood pressure started to rise. I almost stayed another day but they decided that I was just anxious because I had to leave Grace behind, which I was. It was so awful leaving the hospital, I just cried and cried as we pulled away. We made calls to the NICU checking on her and we continued to get calls on her progress and from the research departments that were still trying to figure out what was wrong and how to correct it.
She got off the respirator and was on the BIPAP and then a CPAP (can't remember the order) and then we gradually got to see her face. Grace was on an IV for the first few days and then went to gavage feeding (through a tube) for a couple of weeks. We finally got to see her eyes open on day 5, she just starred hard into our eyes, constantly! Never moving her gaze away from us. Chris and I cherish these individual moments so much. We eventually got to see her move on her own during the 2nd week and hold her, kangaroo style! Immediately after skin on skin her platelets seemed to stabolize! All in all Grace had to have five platelet transfusions.Then we finally heard her, oh, how beautiful, finally a cry, a sound, anything, it was so wonderful. Oh, how strong sweet baby Grace is! She amazed everyone on how fast she was recovering at this point.
Day 22, Friday late afternoon, we passed the car seat test etc. just waiting to be released. The ride home, she was so tiny that it seemed like she stopped breathing a couple of time in the seat on the way home.
So basically no one ever new why and how. Once she was home it was business as usual except for a few more appointment with the pediatrician due to her small size, just at 5 lbs. All of the physicians left the past in the past and said sometimes we never know. I had a couple of clots in the placenta and the cord was around her neck but she was so tiny that it was not harmful to her, and there was the beginning of placenta abruptio, but that was it. No more anwers to my questions from anyone. Until, I got pregnant with Gabrielle, they immediately, did lots of blood testing. My labs came back positive for Factor V leiden mutation and phospholipid anti-body syndrome. Well, that must be it, what happened with Grace.
Wednesday, November 11, 2009
I should rename this blog Therapy for Mommy, Grace is perfect and resilient!
Let's see how do I begin. Well, first off, a BIG SHOUT out to my hubby, Chris and woot.com for the free headset, (only $5 s/h). It was definitely needed today for all the return medical calls. The neurologist called me back two minutes after I picked up the girls, so I quickly pulled into the funeral home on Sawnee Dr. and had to get out of the car, too noisy you know! Any way the doc is one of those that really undercuts a dx (diagnosis). For example he would probably say your child is slender not skinny, get the picture?!
So here is what I have so far. Brain scarring (aka, damage, although minor), deep white matter damage, gliosis, so a mild remote injury, or as he stated, 'a lttle injury'. So upon the few questions that I could get to, I pulled out of him, my ? so this in definitely NOT ITW (idiopathic toe-walker), and so this is mild CP (cerebal palsy) and he said and I quote, "yes, you can say that, mild spastic diparesis" or CP. Yes many questions still to come. But on a cell phone in the rain in a funeral home parking lot was not the right time or place. We know enough now to move forward. We will get more questions answered in the next week. Don't worry I will be asking.
We are going to proceed with the protocol that he suggested. Botox injection, 11-18-09 and then about three rounds of hard casting, weekly to increase the flexion in her right leg. Then AFO's (ankle-foot orthodic). Her leg is already in contracture. So we need to get on this STAT to hopefully avoid surgery. Dr. Berensen is not sure on the expectations to give me regarding this, at least he is honest! But I know my God, He can do anything and my sweet baby Grace, and how strong and courageous that she is.
The is new and VERY CHALLENGING territory for me, I must be honest. I have always been the EMT rushing to the emergency, calm cool and collected. I have not done well with long-term care. So yes, I am frightened that I cannot live up to the needs of us all. Okay, that is enough of that.
Here are the high points in my opinion, the white matter can be worked with
"The brain in general (and especially a child's brain) can adapt to white-matter damage by finding alternative routes that bypass the damaged white-matter areas, and can therefore maintain good connections between the various areas of gray matter."http://en.wikipedia.org/wiki/White_matter
So, once again, I am so thankful that Our God gave us the discernment to begin the therapy at A Healing Place, because we have already begun some of that repair and will have more knowledge to tackle the rest, now.
Please spread the word about Factor V Leiden Mutation and phospholipid anti-body syndrome. Think of what can be prevented by spreading the word.
So I must close now. If you are reading this, I do not have anymore to answer or give. I just pray that we continue to hear and honor Our God through all tx (treatments) for Grace, this is surely not a sprint, or a marathon but a lifetime. Please pray that we can train for this and have the perfect words to say to her for all of the moments to come. Oh, and also, very selfishly, please pray that my upcoming test (chest x-ray, CT of the head, and barium swallow) will all come back with out the CA. There is no time for that. Mommy needs to be stronger than ever before! Thanks for listening! Good night!
So here is what I have so far. Brain scarring (aka, damage, although minor), deep white matter damage, gliosis, so a mild remote injury, or as he stated, 'a lttle injury'. So upon the few questions that I could get to, I pulled out of him, my ? so this in definitely NOT ITW (idiopathic toe-walker), and so this is mild CP (cerebal palsy) and he said and I quote, "yes, you can say that, mild spastic diparesis" or CP. Yes many questions still to come. But on a cell phone in the rain in a funeral home parking lot was not the right time or place. We know enough now to move forward. We will get more questions answered in the next week. Don't worry I will be asking.
We are going to proceed with the protocol that he suggested. Botox injection, 11-18-09 and then about three rounds of hard casting, weekly to increase the flexion in her right leg. Then AFO's (ankle-foot orthodic). Her leg is already in contracture. So we need to get on this STAT to hopefully avoid surgery. Dr. Berensen is not sure on the expectations to give me regarding this, at least he is honest! But I know my God, He can do anything and my sweet baby Grace, and how strong and courageous that she is.
The is new and VERY CHALLENGING territory for me, I must be honest. I have always been the EMT rushing to the emergency, calm cool and collected. I have not done well with long-term care. So yes, I am frightened that I cannot live up to the needs of us all. Okay, that is enough of that.
Here are the high points in my opinion, the white matter can be worked with
"The brain in general (and especially a child's brain) can adapt to white-matter damage by finding alternative routes that bypass the damaged white-matter areas, and can therefore maintain good connections between the various areas of gray matter."http://en.wikipedia.org/wiki/White_matter
So, once again, I am so thankful that Our God gave us the discernment to begin the therapy at A Healing Place, because we have already begun some of that repair and will have more knowledge to tackle the rest, now.
Please spread the word about Factor V Leiden Mutation and phospholipid anti-body syndrome. Think of what can be prevented by spreading the word.
So I must close now. If you are reading this, I do not have anymore to answer or give. I just pray that we continue to hear and honor Our God through all tx (treatments) for Grace, this is surely not a sprint, or a marathon but a lifetime. Please pray that we can train for this and have the perfect words to say to her for all of the moments to come. Oh, and also, very selfishly, please pray that my upcoming test (chest x-ray, CT of the head, and barium swallow) will all come back with out the CA. There is no time for that. Mommy needs to be stronger than ever before! Thanks for listening! Good night!
Monday, November 9, 2009
"Picture Day"
Yes, that is right! What you tell your toddler when they are going for an MRI. I am so thankful for CHOA (Children's Healthcare of Atlanta @ Webb Bridge) and their patience, kindness and CLARITY. Yes, I just love that clarity!! They had some great suggestions on how to 'prepare' your child 'age-appropriately' of course. So knowing our Grace we used the suggestions but tweaked them no not tweet! LOL
So over the weekend we are going to go get your picture done and not go to therapy with Dr. Nova. then Sunday night, your picture is going to let us see inside your brain and your spine, which she thought was cool. Our 'talk' is and has always been in making each of us stronger by taking care of ourselves. There is not something wrong just other's helping us run faster, etc.
The prep beforehand was interesting. I got her up at 4:30 am so she could eat some food. No solids after 5am. Then we went back to bed for about 2 hours (well she did) and then we ate some jello and drank some water. Then NPO (nothing by mouth) after 9am.
I told her that when her pictures were to be taken she would be very still so they could get nice pictures so I let her bring her lovey, blanket, kitty (plush, of course!) and comfy socks and slippers, why not! We almost made it without sedation but it was too confining over her head, which I would have need to be sedated, too! I was very impressed with the courage and trust that our sweet baby Grace displayed today during the IV. She did not hyperventilate, gag or anything. Just crying and lots of sweating (yes, she gets that from Daddy)!! So much sweating that the tape would not hold and none of us wanted her to have another stick, so they got the 'pillow' (splint) to hold her hand in place and lots of tape and a washcloth!! Yes, they did what they needed to do! I love it!!
The sedation was FAST and hard which I will not go into much detail, why, because it is SINGED into my brain, forever! Let me just give you a hint, I never want to see my child's head fall hard into my arms (cradle position) like that again. Oh, how my heart ached. What a scary, vulnerable sight to see. But once again CHOA was there for her but even asked me how Mommy was doing. Mommy was staying strong until I got into the waiting room where I quickly started to text my emotions to my friend. I so needed to do that, it got it out so I could keep my eyes and mind on God and toward the goal.
Another compliment to CHOA, Nurse Tammy and Mr. Vinny! They were so patient and could read my body language and gestures to know what to discuss in front of her and what-not. They also used those great words like hugs, from the BP cuff and pillow instead of splint. So many times medical personnel get cynical and just go through the motions. Well, not at CHOA, they are right there for you knowing and helping you with a first sedation and they are INCREDIBLE. If I ever go back into the medical field I can see myself in this area due to their love, kindness, patient, well I could go on, but I have lots of laundry and stuff to do right!
So the MRI of the brain and L-spine lasted A LOT longer than expected. She moved a bit during the spine portion so they had to adjust her med's and evaluate her. I am grateful that they take their time. Our apt. was at 11a. they came and got us by 11:09 and started MRI attempts without sedation at 12 (right on time) and she was out of the MRI by 2 pm. She awoke with some words and rubs from Nurse Tammy at about 2:15. She was so cute and it warmed my heart that she wanted to see me. Yes, yet again, our children always amaze me!! Her trust did not waver at all for me. In fact it feels stronger, maybe because I went through it with her.
We cannot keep our children from every boo boo or heartbreak but we can be there with them as they go through it with a hand, a hug, guidance and love. Yet, another perfect example of Our loving Father. He is always there with us. We have just got to take a deep breath and realize that he is holding our hand or holding me up!! We were out of there by 2:30.
Grace is doing great. She did not have any nausea or vomiting. We relaxed on the couch for a bit and then played. What a beautiful and purposeful day. Thank you, Lord for going through it with us, yet once again! We count on you oh, so much and are so thankful!!
So over the weekend we are going to go get your picture done and not go to therapy with Dr. Nova. then Sunday night, your picture is going to let us see inside your brain and your spine, which she thought was cool. Our 'talk' is and has always been in making each of us stronger by taking care of ourselves. There is not something wrong just other's helping us run faster, etc.
The prep beforehand was interesting. I got her up at 4:30 am so she could eat some food. No solids after 5am. Then we went back to bed for about 2 hours (well she did) and then we ate some jello and drank some water. Then NPO (nothing by mouth) after 9am.
I told her that when her pictures were to be taken she would be very still so they could get nice pictures so I let her bring her lovey, blanket, kitty (plush, of course!) and comfy socks and slippers, why not! We almost made it without sedation but it was too confining over her head, which I would have need to be sedated, too! I was very impressed with the courage and trust that our sweet baby Grace displayed today during the IV. She did not hyperventilate, gag or anything. Just crying and lots of sweating (yes, she gets that from Daddy)!! So much sweating that the tape would not hold and none of us wanted her to have another stick, so they got the 'pillow' (splint) to hold her hand in place and lots of tape and a washcloth!! Yes, they did what they needed to do! I love it!!
The sedation was FAST and hard which I will not go into much detail, why, because it is SINGED into my brain, forever! Let me just give you a hint, I never want to see my child's head fall hard into my arms (cradle position) like that again. Oh, how my heart ached. What a scary, vulnerable sight to see. But once again CHOA was there for her but even asked me how Mommy was doing. Mommy was staying strong until I got into the waiting room where I quickly started to text my emotions to my friend. I so needed to do that, it got it out so I could keep my eyes and mind on God and toward the goal.
Another compliment to CHOA, Nurse Tammy and Mr. Vinny! They were so patient and could read my body language and gestures to know what to discuss in front of her and what-not. They also used those great words like hugs, from the BP cuff and pillow instead of splint. So many times medical personnel get cynical and just go through the motions. Well, not at CHOA, they are right there for you knowing and helping you with a first sedation and they are INCREDIBLE. If I ever go back into the medical field I can see myself in this area due to their love, kindness, patient, well I could go on, but I have lots of laundry and stuff to do right!
So the MRI of the brain and L-spine lasted A LOT longer than expected. She moved a bit during the spine portion so they had to adjust her med's and evaluate her. I am grateful that they take their time. Our apt. was at 11a. they came and got us by 11:09 and started MRI attempts without sedation at 12 (right on time) and she was out of the MRI by 2 pm. She awoke with some words and rubs from Nurse Tammy at about 2:15. She was so cute and it warmed my heart that she wanted to see me. Yes, yet again, our children always amaze me!! Her trust did not waver at all for me. In fact it feels stronger, maybe because I went through it with her.
We cannot keep our children from every boo boo or heartbreak but we can be there with them as they go through it with a hand, a hug, guidance and love. Yet, another perfect example of Our loving Father. He is always there with us. We have just got to take a deep breath and realize that he is holding our hand or holding me up!! We were out of there by 2:30.
Grace is doing great. She did not have any nausea or vomiting. We relaxed on the couch for a bit and then played. What a beautiful and purposeful day. Thank you, Lord for going through it with us, yet once again! We count on you oh, so much and are so thankful!!
Tuesday, November 3, 2009
Summary of the journey
Grace is doing wonderful. We have seen improvements and we are so thankful for her might-a-mins supplements, the nordic naturals omega-3's and her diet. Also, we are seen more coordination and muscle strength from her therapy.
We wanted to get more insight into Grace's body what if any issues that arose during her gestation, delivery or hospital stay so we met with Child Neurology yesterday. Dr. Frank Berensen, and after his evaluation he wants to do a MRI, botox injections into her achilles tendon (right) and then hard casting (weekly) then off and re-flexion and then on again for three weeks.
My prayers (and my friends) prayers were so answered yesterday. The appointment went better than I could have ever hoped for. We told her about three days in advance that we were going to go see a brain doctor and see how her muscles in her body and brain are growing. The each day I would answer one of her questions or add something else for her to think about. I made sure that it was day to day talking not a big deal at all which I think was the key. She did not flip out or cry once. I will always cherish that memory. She is 39.5 inches tall and 32 pounds. Yes, thank you to the might-a-mins again!!
We got the MRI scheduled today for next Monday, 11-09-09. She will have to be sedated and I just ask you Lord to give me the perfect words to say to her before during and after. I know how traumatized that she can get with things and I only want her trust in me to flourish and not decrease.
This is why one will never find a diary of mine!!
Yes, I am not a consistent writer. However, I am doing my best.
Grace had a wonderful birthday. She absolutely loved the cake that I made for her birthday. Three layers of chocolate and vanilla with Polly Pocket and their vehicles all over it. The cake was delicious but the icing would not get stiff so I improvised and just dripped the icing down the cake.
Tuesday, July 14, 2009
Monday - Oh, what a day!
Grace did incredibly well at therapy today. She increased her stability on the b~ ball and then walked better and longer on the stones. Still doing the balance beam well and the hand movements, too.
However, the excitement of therapy was only the beginning. Now let me preface my story first with the note that many people will not get the magnitude of her accomplishment's today. But her Mommy sure does. So Grace wanted something to drink and I told her that her drink was in the refrigerator and that wouldn't it be great if she could go in the fridge when she wanted to! So I showed her ONCE how to stand and use both hands on either door to push and pull at the same time. At first she tried but it was not budging and she said, "I can't do it", I told her yes you can keep pulling and it opened!!!! This is the first time EVER that she has been able to do something physical without numerous amounts of instruction, etc. I jumped for joy and of course she was very excited too.
Then it was tv time. I let her watch Toy Story 2 and for the first time ever she created conversations with me about the movie telling me what the characters were feeling and why. My jaw just dropped open. She was not in a 'frozen state' with eyes and ears only fixed on the movie. So of course I started to test her more (yes, my cynical side again) she answer my questions when I was in the other room asking her at a low voice, too!! AMAZING I TELL YOU!
Oh, thank you Lord!
Sunday, July 12, 2009
Our journey continues
Yes, I have not posted in sometime. It is thundering and lightning but somehow it is comforting. I guess it is the closeness that I feel to God when the weather intensifies. Not because I am scared but His awesome power is so evident. Thank you Lord for taking care of our earth as you do.
Grace has continued to grow in her therapy. We got her blood test results back on July 3th. This is for food sensitivites or intolerances. If she scores a 3+ on anything we need to stay away from that and then the scale goes to 2+ (moderate), 1+ (low), then VL (very low) and 0 (no issues).
I was a bit shocked on a few of the results which reiterated the correct decision to get the test done. Grace scored a 3+ for the following:
Celery, Cucumber (pickles), String bean (yes, she is daughter, hee hee), Tomato (shocked me), Egg white and yolk (another shocker), Gluten ( I knew it), peanut (new revelation, like mine recently), Pinto bean (huh?!), Soy ( new revelation, like me, again), and Wheat (ditto).
So basically since she scored so high for eggs it is advised to cut out all dairy and so on. The report from Genova Diagnostics is wonderful. I am so thankful that we did this IgG Antibody Assessment.
I wish our healthcare system would take a more proactive approach to medicine and things of this nature. but once again it is not lucrative to be proactive! Ugh!!
So we just started the new elimination diet, mainly the GFCF diet (gluten free, caisen free). I am also keeping tomato and corn out of her food intake if at all possible.
She has been doing well with her supplements and vitamin. She loves the bread that I am making in our new bread machine. We just purchased a ice cream machine and I am so excited to get it in a couple of days to make ice cream that she can eat!
Her birthday is in four days, and I am going to try to make her cake. It will be so fun, I will be pouring all my love into this cake as I do making the bread.
She is getting better at the IM (interactive metronome), she lives her music, and is ok with her eyelights but we have to work at it. We are not doing the goggles yet. Basically I do not want to risk her opening her eyes and looking at the light and getting eye damage. I feel that we should wait until she is a bit older. Her therapists are ok with that.
Her gait has improved greatly, walking on her feet not toes for longer periods of time and with her knees bending appropriately.
Last night, and the day before, I felt as if the fog had lifted. It seemed as if she really understood what I was saying and comprehended it. You know 1+1=2. I know that we are going to hit a low as all the literature states. I just pray that it happens and ends before my surgery on the 11th of August.
Oh, thank you Lord, again. Thank you for the confidence to look to You when I have fear or doubt. Please help me to continue to seek out You and my husband for discernment for that is when I am truely at peace.
The message at church today centered all around approval. This was so great for me to hear. Thank you Lord. Below is the bible verse for the message.
Fear of man will prove to be a snare, but whoever trusts in the LORD is kept safe.
Proverbs 29:25
Good Night! Audra
Monday, June 22, 2009
Day 3
Today we had the blood test at Dr. Ellie Campbell's office. She is a (DO) doctor in osteopathic medicine not an (MD) allopathic doctor. Very interesting. I sure hope that this era of Dr. Oz continues and strengthens. It is about time that we empower ourselves with enough confidence to take control of our health and expect more, question more and search for more solutions for greater health. Ok, enough of my positions.
Grace, was very upset at me putting the Bandaids on to cover up the lidocaine cream. But I finally got her to put them on and I made a star and heart with a red marker. She liked that!
We got to the office and I knew I had to say something to her. So I said, "we need to go into this office and I need you to listen to Mommie and do what I ask you to do!" "If you do this I will take you to the store to buy a toy!" She was ok with that, I thought!
She was great in the waiting area but as soon as we walked into the examining room and the RN asked her to sit up on the patient seat (you know on the paper) she flipped out. So to make a long story short! It was very traumatic for all of us in the room, especially Grace. After 3 sticks that failed due to her vein rolling and no flow of blood. The RN went next door to the wonderful, full time phlebotomist and asked her to please draw the blood since she was more experienced. She tried once with the pediatric butterfly but same issues. So she said lets just get an adult so we can get it done and fast. It was a success but it got tense at the end when her blood stopped flowing again!
Thank you Jesus, for it working. Oh, and thank you Jesus for Lucy, the yellow lab at the office. Lucy was so loving to Grace and she totally forgot about it all when she got to feed two doggie biscuit to her. She even liked petting her. Then Grace told Lucy bye bye and waved and Lucy gave her the sweetest low bark! Oh, it was so awesome.
Then off to Target. I felt that if Grace got five sticks she deserved a few toys! She picked out three kitties, of course. Two webkins, and a big soft cuddly kitty. She named them after the book that we read at the office. Frisky, Patches and Pumpkin are new members of our family.
It was so painful to see my beautiful Grace screaming in pain and fear but this test is so necessary. A couple of minutes of pain are going to bring her a lifetime of success in health and wellness.
You see this blood test is to determine not ALLERGIES but food intolerance's and sensitivities. Our bodies tell us when something is wrong it is our job to learn and listen to what our bodies are telling us. We shall get the test results in about a week.
Day 2
Well, Grace had a great time at therapy on Thursday. She loves the 'stickers' medical tape to help her with sensory/tactile stuff. She is doing better on the balance beam. She is still holding Tracey's hand but not Annie and Tracey and she is walking heels down on it more consistently too.
On Friday, Grace started saying look Mommie, I am good I am walking on my heels. Wow, that shocked me at first. Yes, of course I thought did she think that she wasn't good because she thought that was my perception. But I knew it wasn't and it was that I and others have been saying, 'heels down'. It was encouraging and making me doubt on her hiccups. This is what is so upsetting about this brain imbalance or deficiency. One minute you have no doubt that interventive means need to happen and then the next minute, she seems absolutely fine. However, upon reflection I know that there are more hiccups and the underlying issues of gait, balance and core cognitive functioning are present and need assistance.
Grace started working with the metronome today. She needed assistance from Tracy on hearing the clap and the five minutes was a bit too long for her according to Tracy.
Grace is in the minority for her age with this therapy. Most of the patients are 8 and up. The parents have been through years and years of different diagnoses, prescriptions and therapies. So it is exciting to get Grace started early while her heart is still innocent and her brain is even more maliable.
Thank you Lord, for this life we lead please continue to open our eyes and ears to hear Your way!
Friday, June 19, 2009
So our therapy journey begins today...
Today is Wednesday, June 17th, 2009.
Grace Marie begins her journey to allow her to reach her destined full potential. As she will tell you, she can do all things through God who gives her strength!
The session went well. She loves A Healing Place. She is so comfortable there and so is Gabrielle, too. After the session I asked Grace to show GJ how to climb into the car and into her car seat. She did and GJ as always went for it right after her with great success.
Today has been such an emotional day for me. Almost four years of emotion have been coming to the surface like an acute onset of GERD!
Wow, I pray and I am investing all my heart, soul and mind into this therapy for Grace. Lord please give her the results she is destined to have.
Thank you God for finally helping me to see that I am not a bad Mommie, that I am not lazy or a terrible trainer and so on and so on...
Oh, Lord please hold us all extra tight this year, we love and need you so.
Grace Marie begins her journey to allow her to reach her destined full potential. As she will tell you, she can do all things through God who gives her strength!
The session went well. She loves A Healing Place. She is so comfortable there and so is Gabrielle, too. After the session I asked Grace to show GJ how to climb into the car and into her car seat. She did and GJ as always went for it right after her with great success.
Today has been such an emotional day for me. Almost four years of emotion have been coming to the surface like an acute onset of GERD!
Wow, I pray and I am investing all my heart, soul and mind into this therapy for Grace. Lord please give her the results she is destined to have.
Thank you God for finally helping me to see that I am not a bad Mommie, that I am not lazy or a terrible trainer and so on and so on...
Oh, Lord please hold us all extra tight this year, we love and need you so.
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