Hi Everyone!
I would like to thank you all for your prayers, your notes, phone calls, and concern for Jeff. I have been overwhelmed at the love that has been shown to us regarding his 'episode' on our trip to Georgia. I am embarrassed to tell you how far behind I am on thank you notes, but just please know that I am grateful from the bottom of my heart. He is not feeling 100%, but he is doing so much better! He has an appointment scheduled with his doctor as soon as we get back to Michigan.
We are thoroughly enjoying our Georgia visit, so far. We have spent time with part of Jeff's family and time with my parents, siblings, nieces and nephews. We have spent some time with a few of our friends and have been lavished with lots of love and hugs from our Beech Haven family. Oh, how I have missed them and their super-duper hugs. Jeff and I are thrilled to be a part of the Freedom Celebration this year, Jeff and I in the orchestra and I am singing a solo. We feel honored to be a part and I must say, things just felt 'right with the world' at rehearsal last night.
Yesterday was a big day for Clara-Bear and doctor visits. It was sort of the day we have been waiting on. Honestly, after some recent conversations with her geneticist in Atlanta (whom I adore), I was a little worried that we were going to be asked to make some really big decisions that I was not quite ready to make. Thankfully, that was not the case, and things worked out exactly the way I would have wanted...and I even got some explanations that clarified things up for me. Basically, both doctors said the same thing (with minor differences) and where Clara is concerned, the geneticist trumps the neurologist (even though we adore him, as well), so here is the nutshell:
She looked GREAT to them! She is getting stronger, more coordinated, and her muscle tone is improving greatly. Thank You Lord!!
They both agreed that we need to keep her on her current medications. The combination she is on is working for her, and at this point, it would be irresponsible to stop something that is helping her. I couldn't agree more.
They both agreed with me that traditional therapy would not be as effective for her right now as gymnastics or swimming. She will continue her equine therapy and we will try to find a way to make the other things happen. God will provide....He ALWAYS does.
The next things were primarily discussed with her geneticist:
There is definitely some type of chromosomal abnormality with Clara. There is an entire panel of chromosomal studies she wants her to have (that should have been done before the biopsy), but I am not sure if we will proceed with those. The geneticist felt that whatever her chromosomal abnormalities are, they are the kind that happen, do the damage they are going to do, and are then done. There was a term for that, but I don't remember it.
The big topic of the day was her Mitochondrial Disease diagnosis. The neurologist had an opinion that was slightly different, but as I said before, geneticist trumps neurologist on the mitochondrial issues because that is what she has devoted her life to studying. We are keeping that diagnosis, but she feels very certain that it is a secondary condition and not the primary one. The Hypophosphatemic Rickets is the primary issue and likely made her mitochondria sick, causing the abnormal muscle biopsy. So, the good news is that the Rickets is treatable. The bad news is that the damage that has been done may not be reversible. There is no way to know how long it will take for her bones to heal. Her geneticist will monitor her for the next four or five years, seeing her once a year unless we need her for something in between. After that time, if the Rickets is gone and her bones are healed, and if she remains metabolically stable, we will talk about removing the Mitochondrial Disease diagnosis.
I can live with that.
Thank you for your love and concern for our sweet Clara. God has blessed her with a determined personality and blinders to not notice there is anything different about her. She is a happy, bright little girl, and loves life to its fullest.
Have a great day!
Love,
Jeannie
Thursday, June 30, 2011
Sunday, June 26, 2011
The Whole, Scary Story
I really debated as to whether or not I would blog about this.
However, after much prayer, and an insightful talk with my 13 year-old, the story does give God so much glory. That is my goal in life...
...to Give God Glory.
I know that some of you received bits and pieces of reports from us when we were on our way to Georgia on Thursday....reports from a terrified woman who was frantically trying to figure out what was happening with her husband and take care of her four children, all while a little over 300 miles from our Michigan home and a little over 400 miles from our Georgia home. (We do not own two homes....we were just going to Georgia to visit friends and family.)
Our day started out perfectly. We were able to pull out of the driveway only one hour from our "hoped for" departure time..nothing short of a miracle for us. We made great time, as the kids were too tired to want to stop and we had a whole new line-up of movies for them to watch that they had not seen in quite some time. About three hours down the road, we stopped for breakfast and potty breaks and hit the road again. Once more, we made it another three hours before everyone decided they would sort of like a lunch/stretch break. We stopped at a rest area and ate our chicken salad sandwiches from home. The kids ran around and played while Jeff and I marveled at how smoothly our trip was going. Jeff even "showed off" for his girls by doing some pull-ups on the iron arbor we were picnicking under. There was joy and laughter and lots of excitement about getting to Georgia.
It's amazing how everything can change in the blink of an eye.
After finishing lunch, cleaning up, and pottying just "one more time wheter we needed to or not", we hopped into the van and settled in for another long stretch. It looked like we would reach Georgia while it was still daylight. Woo-hoo!! However, within fifteen minutes of leaving the rest area, I looked over at Jeff and he had his shirt held up letting the A/C hit his skin. I asked him if he was hot, and he said, "No, my stomach is cramping." This is not entirely unusual for him. Within about a minute, he said, "Jeannie, I need you to pray."
Normally it would be nothing for me to pray out loud, but I opted for silent prayer so as not to alarm the girls. I put my hand on his shoulder and started praying. A minute later, he said a little more emphatically, "Jeannie, I really need you to pray." I assured him I was praying, and began to pray more intensely. It was at this time he pulled off the highway and as we traveled up the exit ramp, I realized he was pale and sweating.
I should have prayed out loud. At least the girls would have had some warning.
He stopped at the top of the ramp at a traffic light, and in a split second, I realized that he had gone limp and was jerking all over. I immediately grabbed him and started crying out to God.
"Dear God, HELP US!! No!! Please, God, help us!"....
I am not one to freak out in crisis, but this scared me to death. My initial reaction was to hold him and make sure he was okay. However, our safety moved up my priority list. I realized that his foot had come off the brake and we were gliding into the intersection. There were cars everywhere, including one red car that really should have hit us. It is only by God's hand that the red car missed us. There was a semi-truck coming from the other direction....there was nowhere to go. I grabbed the wheel (I couldn't reach the brake) and tried to pull us over to the side of the road. I switched gears to "park" and prayed that would be enough to stop the van before something terrible happened.
We did stop, right into a huge dirt bank, and I immediately jumped out of the car...again trying not to alarm the girls any further....and called 911.
At this point, Jeff was still passed out and jerking all over and I was terrified. At one point, the 911 operator asked if he was breathing. I looked back and he was slumped over in his seat.
"Oh, dear Lord, please let him be breathing".
About that time, he looked up, very confused, and pointed to the gas station right in front of us.
"Thank you, God He is still breathing."
He moved to the passenger seat and I drove us to the gas station.
To make a long story short, we pulled up to the gas station and the ambulance came within 5 minutes. They took him to the hospital, and as we followed, the questions began. You know, the one million questions from four, very frightened little girls.
"What's going to happen to Daddy?"
"Why is this happening?"
"How are we going to pay for this? Will insurance cover it?"
"What will happen to us if Daddy has to stay in the hospital?"
"Are we still going to Georgia?"
"Did we pray for the wrong things when we left the house?"
At that point, if I could have stopped the car I would have, but as I drove I said, "Girls, I want you to listen to me. You don't ever have to wonder if you have seen the hand of God, because today, you saw His hand in a mighty way. It was only by God's hand that we were not hit by a car in the intersection when Daddy passed out. I don't know why all of this is happening, but here is what I do know. God is still sovereign. None of this took God by surprise. Before this even happened, He already knew how He was going to take care of us and He has us and your Daddy in the palm of His hand."
All of those things are true, and I felt a peace like I never have at that very moment. I was still very concerned and shaken up, and of course, all I wanted to do was get to Jeff's side, but still...that peace that passes all understanding.
It took us almost thirty minutes to get to the hospital because of a missed turn and lots of construction. When we finally arrived, I felt the loneliness of being all by my self with my four girls. I couldn't help but think, "What if I leave here a single mother?" My logic knew that he was probably going to be okay, but those were the thoughts that popped into my head. The triage nurses would not let the girls go back with me (of course), so after I consoled them (they had all new break downs at this point) I went back to check on Jeff. He was laying in the bed, still pale, but awake and talking. He was asking the nurse if there was someone who could help me and his girls.
That's him. Always thinking of us first.
After much testing, the doctor confirmed that he believed it was the same problem Jeff had dealt with in high school and college, even though it has been almost 20 years since he has had any sign of it. It is called a vasovagal reaction. When he was in high school and college, there were a few times he passed out in the bathroom, but he was always home alone so no one has ever seen it happen to know exactly what his body does when it happens. Basically, after he eats, the blood vessels to his stomach open to allow blood to go his stomach to aid digestion. The problem is that all of his vessels dilate to allow blood in and blood rushes to all of his lowere xtremeties, robbing his brain of blood and oxygen. The doctor said it is very common for a person to appear as if they are having a seizure, but if it had been a seizure, he would have been disoriented much longer. He also said that it would be very unlikely that he would develop a seizure disorder at htis age, having no previous history of seizures. So after hours of testing and hours of me running back and forth from Jeff's room to the waiting room to check on the girls, it was time to leave.
There was a part of me that thought, "I feel pretty good still. Maybe we can make it a few hours more in the car so we don't have to get a hotel room." Thankfully, God put other people in my life to think for me when I am having insane thoughts like those. My Mom (Bev) called ahead to a hotel near the hospital and got us a room for the night. She convinced me that I was too emotionally exhausted to keep traveling. Even though I still felt pretty good, I didn't argue.
I am glad I didn't argue.
Once we got into the hotel room and I knew that Jeff was resting and all of my little chickies were safe, all of the adrenaline left my body and I crashed. I mean C-R-A-S-H-E-D. I laid down on the bed and that is the last thing I remember until I woke up about an hour and a half later.
In the midst of this whole situation, we have so much to be thankful for.
We did NOT get in a crash. I get chills when I ask myself questions like:
"What if we had been driving down the highway at 75 miles per hour on cruise control?"
"What if a car or semi truck had hit us when we drifted into the intersection?"
I am so thankful the Jeff has not developed some sort of seizure disorder or did not have something awful like a brain tumor.
I am thankful that in the midst of all the juggling, the girls were safe and taken care of.
I am thankful for the godly administrator who took me under her wings.
I am thankful for a place to stay that night.
Most of all, I am thankful for all of YOU, our Michigan and Georgia friends, who prayed us through the whole ordeal.
I am thankful to be safely in Georgia visiting friends and family.
Never doubt if God is there for you. He is and He loves you.
Blessings!
Jeannie
However, after much prayer, and an insightful talk with my 13 year-old, the story does give God so much glory. That is my goal in life...
...to Give God Glory.
I know that some of you received bits and pieces of reports from us when we were on our way to Georgia on Thursday....reports from a terrified woman who was frantically trying to figure out what was happening with her husband and take care of her four children, all while a little over 300 miles from our Michigan home and a little over 400 miles from our Georgia home. (We do not own two homes....we were just going to Georgia to visit friends and family.)
Our day started out perfectly. We were able to pull out of the driveway only one hour from our "hoped for" departure time..nothing short of a miracle for us. We made great time, as the kids were too tired to want to stop and we had a whole new line-up of movies for them to watch that they had not seen in quite some time. About three hours down the road, we stopped for breakfast and potty breaks and hit the road again. Once more, we made it another three hours before everyone decided they would sort of like a lunch/stretch break. We stopped at a rest area and ate our chicken salad sandwiches from home. The kids ran around and played while Jeff and I marveled at how smoothly our trip was going. Jeff even "showed off" for his girls by doing some pull-ups on the iron arbor we were picnicking under. There was joy and laughter and lots of excitement about getting to Georgia.
It's amazing how everything can change in the blink of an eye.
After finishing lunch, cleaning up, and pottying just "one more time wheter we needed to or not", we hopped into the van and settled in for another long stretch. It looked like we would reach Georgia while it was still daylight. Woo-hoo!! However, within fifteen minutes of leaving the rest area, I looked over at Jeff and he had his shirt held up letting the A/C hit his skin. I asked him if he was hot, and he said, "No, my stomach is cramping." This is not entirely unusual for him. Within about a minute, he said, "Jeannie, I need you to pray."
Normally it would be nothing for me to pray out loud, but I opted for silent prayer so as not to alarm the girls. I put my hand on his shoulder and started praying. A minute later, he said a little more emphatically, "Jeannie, I really need you to pray." I assured him I was praying, and began to pray more intensely. It was at this time he pulled off the highway and as we traveled up the exit ramp, I realized he was pale and sweating.
I should have prayed out loud. At least the girls would have had some warning.
He stopped at the top of the ramp at a traffic light, and in a split second, I realized that he had gone limp and was jerking all over. I immediately grabbed him and started crying out to God.
"Dear God, HELP US!! No!! Please, God, help us!"....
I am not one to freak out in crisis, but this scared me to death. My initial reaction was to hold him and make sure he was okay. However, our safety moved up my priority list. I realized that his foot had come off the brake and we were gliding into the intersection. There were cars everywhere, including one red car that really should have hit us. It is only by God's hand that the red car missed us. There was a semi-truck coming from the other direction....there was nowhere to go. I grabbed the wheel (I couldn't reach the brake) and tried to pull us over to the side of the road. I switched gears to "park" and prayed that would be enough to stop the van before something terrible happened.
We did stop, right into a huge dirt bank, and I immediately jumped out of the car...again trying not to alarm the girls any further....and called 911.
At this point, Jeff was still passed out and jerking all over and I was terrified. At one point, the 911 operator asked if he was breathing. I looked back and he was slumped over in his seat.
"Oh, dear Lord, please let him be breathing".
About that time, he looked up, very confused, and pointed to the gas station right in front of us.
"Thank you, God He is still breathing."
He moved to the passenger seat and I drove us to the gas station.
To make a long story short, we pulled up to the gas station and the ambulance came within 5 minutes. They took him to the hospital, and as we followed, the questions began. You know, the one million questions from four, very frightened little girls.
"What's going to happen to Daddy?"
"Why is this happening?"
"How are we going to pay for this? Will insurance cover it?"
"What will happen to us if Daddy has to stay in the hospital?"
"Are we still going to Georgia?"
"Did we pray for the wrong things when we left the house?"
At that point, if I could have stopped the car I would have, but as I drove I said, "Girls, I want you to listen to me. You don't ever have to wonder if you have seen the hand of God, because today, you saw His hand in a mighty way. It was only by God's hand that we were not hit by a car in the intersection when Daddy passed out. I don't know why all of this is happening, but here is what I do know. God is still sovereign. None of this took God by surprise. Before this even happened, He already knew how He was going to take care of us and He has us and your Daddy in the palm of His hand."
All of those things are true, and I felt a peace like I never have at that very moment. I was still very concerned and shaken up, and of course, all I wanted to do was get to Jeff's side, but still...that peace that passes all understanding.
It took us almost thirty minutes to get to the hospital because of a missed turn and lots of construction. When we finally arrived, I felt the loneliness of being all by my self with my four girls. I couldn't help but think, "What if I leave here a single mother?" My logic knew that he was probably going to be okay, but those were the thoughts that popped into my head. The triage nurses would not let the girls go back with me (of course), so after I consoled them (they had all new break downs at this point) I went back to check on Jeff. He was laying in the bed, still pale, but awake and talking. He was asking the nurse if there was someone who could help me and his girls.
That's him. Always thinking of us first.
After much testing, the doctor confirmed that he believed it was the same problem Jeff had dealt with in high school and college, even though it has been almost 20 years since he has had any sign of it. It is called a vasovagal reaction. When he was in high school and college, there were a few times he passed out in the bathroom, but he was always home alone so no one has ever seen it happen to know exactly what his body does when it happens. Basically, after he eats, the blood vessels to his stomach open to allow blood to go his stomach to aid digestion. The problem is that all of his vessels dilate to allow blood in and blood rushes to all of his lowere xtremeties, robbing his brain of blood and oxygen. The doctor said it is very common for a person to appear as if they are having a seizure, but if it had been a seizure, he would have been disoriented much longer. He also said that it would be very unlikely that he would develop a seizure disorder at htis age, having no previous history of seizures. So after hours of testing and hours of me running back and forth from Jeff's room to the waiting room to check on the girls, it was time to leave.
There was a part of me that thought, "I feel pretty good still. Maybe we can make it a few hours more in the car so we don't have to get a hotel room." Thankfully, God put other people in my life to think for me when I am having insane thoughts like those. My Mom (Bev) called ahead to a hotel near the hospital and got us a room for the night. She convinced me that I was too emotionally exhausted to keep traveling. Even though I still felt pretty good, I didn't argue.
I am glad I didn't argue.
Once we got into the hotel room and I knew that Jeff was resting and all of my little chickies were safe, all of the adrenaline left my body and I crashed. I mean C-R-A-S-H-E-D. I laid down on the bed and that is the last thing I remember until I woke up about an hour and a half later.
In the midst of this whole situation, we have so much to be thankful for.
We did NOT get in a crash. I get chills when I ask myself questions like:
"What if we had been driving down the highway at 75 miles per hour on cruise control?"
"What if a car or semi truck had hit us when we drifted into the intersection?"
I am so thankful the Jeff has not developed some sort of seizure disorder or did not have something awful like a brain tumor.
I am thankful that in the midst of all the juggling, the girls were safe and taken care of.
I am thankful for the godly administrator who took me under her wings.
I am thankful for a place to stay that night.
Most of all, I am thankful for all of YOU, our Michigan and Georgia friends, who prayed us through the whole ordeal.
I am thankful to be safely in Georgia visiting friends and family.
Never doubt if God is there for you. He is and He loves you.
Blessings!
Jeannie
Wednesday, June 22, 2011
Mitochondrial Disease Symposium
I still don't think I have processed all I learned at the United Mitochondrial Disease Foundation National Symposium, but I am at least going to share the things I have processed...and some fun stuff, too!
Last Friday morning I got up dark and early (after two days in Ann Arbor on Wednesday and Thursday) to head to Chicago where the symposium was held. This may explain why I have processed anything yet....I was exhausted! However, so happy to be there and so happy for what I learned. In a nutshell, I learned (again) that nothing about Mitochondrial Disease is an exact science. There was one doctor who got up to speak who, I promise you, I wanted to hug him and squeeze him and bring him home to be our live-in grandpa. He was the cutest thing! He said that he did his first muscle biopsy in 1972 and has woken up every single morning since then wanting to know more, to understand more, and to figure this thing out. I have to tell you, I LOVE that there are doctors out there with this kind of passion. He also said, "Those were good days and those were old days, but those were not the 'good old days'. These are the best days there have ever been for what is happening in the field of Mitochondrial Diseases." Wow! Very Cool.
One of the greatest things about the conference is that the most respected, knowledgeable doctors in the country are there. They speak publicly and they are accessible privately. I heard a talk on the misdiagnosis of Mitochondrial Disease, the latest developments in testing methods, advancements in therapy for Mito patients, and even went to a Music Therapy session for the teenagers. That was fun....I can definitely see where music therapy could be so beneficial for these kids. I have always said that if I went back to school to get my Master's Degree, it would be in Music Therapy. This definitely gave me an itch. One of my favorite things was called The Doctor is In" where you could sign up for a fifteen minute slot with any doctor of your choice. Clara's doctor, Dr. Kendall was there, and she is fabulous, but I knew we would be seeing her in a week anyway, so I decided to choose a different doctor and get a fresh perspective. He did have some interesting observations and some suggestions of additional testing we may want to consider, and that she would consider if Clara were her patient. I will mention those to Dr. K and ask her what she thinks. What a blessing, though, to have that much brilliance...the top mito doctors in the country....all in one place!
There were also a number of vendors there...from different laboratories, T-shirt vendors, medical supplies, to a booth who was selling a book about a very inspiring, godly young lady who died at the age of 16 of mito, but lived her life to the fullest and was able to see outside of herself in spite of it all. Her mother has published a book of all of her Care Pages entries that I can't wait to read. That's the kind of example I want for Clara if we ever get to that point.
As great as all of this was, I have to tell you, the best part were the PEOPLE. I know it surprises those of you who know me that I was energized and excited by the people I met. :-) Of course, with anything like this, you meet Moms who have lost children and have heart-breaking, inspiring stories, but there is also fun and laughter. Jeff said it sounded like "Mito Moms Gone Wild!". I met some precious women who I know I will remain in contact with and will look forward to seeing at future conferences. I met one family from New York. They had two, precious girls, ages 15 and 12, that sang "southern" for me. Hilarious! I recorded it but cannot figure out how to post it here. I met a few other Moms who live in Michigan. That was neat. Two of the ladies I met were like meeting Soul Sisters...truly. One I was SOOO excited to meet. She and I have corresponding for a long time via our blogs, and I had so much fun with her! I'm talking, laugh-till-your-gut-is-about-to-split fun! Her name is Clara-Leigh and she has three kiddos, two who are affected by Mito. She is high energy and super-fun and a go-getter. I could barely keep up with her. (Did I mention I was exhausted).
The other lady Clara-Leigh and I roomed with...I had never met her until I got to Chicago. Her name is Nina, she lives in Michigan and also has three children, one who is affected. She is super-sweet and I got extra time to get to know her. Originally she was going to ride Amtrek back to Grand Rapids and I was going to give her a ride to the train station. However, because of some miserable traffic, she missed her train. That meant we got to ride all the way back to Niles together...and talked the ENTIRE time! her husband picked her up at our house and they stayed and we all talked MORE! Super-sweet family. Unfortunately, I didn't get a picture of her.
Last, but DEFINITELY not least, I got to see and spend some time with (but not enough)...Mito-Mom (insert super-hero music here). There are no words that express what this lady has meant to me. God brought her into my life at just the right time to help me muddle through the mess of Mito when I needed it the most. She said I could reveal her true identity.....
Mary Beth, you are an angel.
This is Skittles, one of the super-sweet service dogs I met.
And finally, just for fun, this is a picture Jeff sent me while I was in Chicago....do you think they had fun with Daddy??
Of all the things I came away with, the main thing I came away so burdened about is the need to pray for these doctors. I have prayed for Clara and our family, I have prayed until I have cried for other Mito kids and their families, but I am ashamed to say, it has never occurred to me on a regular basis to pray for these doctors. They are the most under-paid in the field and have more passion than any other group of doctors (as a whole) that I have ever had the pleasure of being around. They love what they do, and they care about their patients. I can promise you, these doctors and researchers will be on my daily prayer list from now on.
Until next time...
Much Love!
Jeannie
Last Friday morning I got up dark and early (after two days in Ann Arbor on Wednesday and Thursday) to head to Chicago where the symposium was held. This may explain why I have processed anything yet....I was exhausted! However, so happy to be there and so happy for what I learned. In a nutshell, I learned (again) that nothing about Mitochondrial Disease is an exact science. There was one doctor who got up to speak who, I promise you, I wanted to hug him and squeeze him and bring him home to be our live-in grandpa. He was the cutest thing! He said that he did his first muscle biopsy in 1972 and has woken up every single morning since then wanting to know more, to understand more, and to figure this thing out. I have to tell you, I LOVE that there are doctors out there with this kind of passion. He also said, "Those were good days and those were old days, but those were not the 'good old days'. These are the best days there have ever been for what is happening in the field of Mitochondrial Diseases." Wow! Very Cool.
One of the greatest things about the conference is that the most respected, knowledgeable doctors in the country are there. They speak publicly and they are accessible privately. I heard a talk on the misdiagnosis of Mitochondrial Disease, the latest developments in testing methods, advancements in therapy for Mito patients, and even went to a Music Therapy session for the teenagers. That was fun....I can definitely see where music therapy could be so beneficial for these kids. I have always said that if I went back to school to get my Master's Degree, it would be in Music Therapy. This definitely gave me an itch. One of my favorite things was called The Doctor is In" where you could sign up for a fifteen minute slot with any doctor of your choice. Clara's doctor, Dr. Kendall was there, and she is fabulous, but I knew we would be seeing her in a week anyway, so I decided to choose a different doctor and get a fresh perspective. He did have some interesting observations and some suggestions of additional testing we may want to consider, and that she would consider if Clara were her patient. I will mention those to Dr. K and ask her what she thinks. What a blessing, though, to have that much brilliance...the top mito doctors in the country....all in one place!
There were also a number of vendors there...from different laboratories, T-shirt vendors, medical supplies, to a booth who was selling a book about a very inspiring, godly young lady who died at the age of 16 of mito, but lived her life to the fullest and was able to see outside of herself in spite of it all. Her mother has published a book of all of her Care Pages entries that I can't wait to read. That's the kind of example I want for Clara if we ever get to that point.
As great as all of this was, I have to tell you, the best part were the PEOPLE. I know it surprises those of you who know me that I was energized and excited by the people I met. :-) Of course, with anything like this, you meet Moms who have lost children and have heart-breaking, inspiring stories, but there is also fun and laughter. Jeff said it sounded like "Mito Moms Gone Wild!". I met some precious women who I know I will remain in contact with and will look forward to seeing at future conferences. I met one family from New York. They had two, precious girls, ages 15 and 12, that sang "southern" for me. Hilarious! I recorded it but cannot figure out how to post it here. I met a few other Moms who live in Michigan. That was neat. Two of the ladies I met were like meeting Soul Sisters...truly. One I was SOOO excited to meet. She and I have corresponding for a long time via our blogs, and I had so much fun with her! I'm talking, laugh-till-your-gut-is-about-to-split fun! Her name is Clara-Leigh and she has three kiddos, two who are affected by Mito. She is high energy and super-fun and a go-getter. I could barely keep up with her. (Did I mention I was exhausted).
The other lady Clara-Leigh and I roomed with...I had never met her until I got to Chicago. Her name is Nina, she lives in Michigan and also has three children, one who is affected. She is super-sweet and I got extra time to get to know her. Originally she was going to ride Amtrek back to Grand Rapids and I was going to give her a ride to the train station. However, because of some miserable traffic, she missed her train. That meant we got to ride all the way back to Niles together...and talked the ENTIRE time! her husband picked her up at our house and they stayed and we all talked MORE! Super-sweet family. Unfortunately, I didn't get a picture of her.
Last, but DEFINITELY not least, I got to see and spend some time with (but not enough)...Mito-Mom (insert super-hero music here). There are no words that express what this lady has meant to me. God brought her into my life at just the right time to help me muddle through the mess of Mito when I needed it the most. She said I could reveal her true identity.....
Mary Beth, you are an angel.
This is Skittles, one of the super-sweet service dogs I met.
And finally, just for fun, this is a picture Jeff sent me while I was in Chicago....do you think they had fun with Daddy??
Of all the things I came away with, the main thing I came away so burdened about is the need to pray for these doctors. I have prayed for Clara and our family, I have prayed until I have cried for other Mito kids and their families, but I am ashamed to say, it has never occurred to me on a regular basis to pray for these doctors. They are the most under-paid in the field and have more passion than any other group of doctors (as a whole) that I have ever had the pleasure of being around. They love what they do, and they care about their patients. I can promise you, these doctors and researchers will be on my daily prayer list from now on.
Until next time...
Much Love!
Jeannie
Tuesday, June 21, 2011
Horse Show
Hi Friends!
I know I promised a blog about the Mitochondrial Disease Symposium I went to last weekend, but it always takes me a few days to process it all. So, before I write about that, I thought I would share with you some of the highlights of Clara's horse show last weekend. Oh what fun!
I know I have said it a hundred times before, but it takes my breath away to see Clara on a horse. She sits up so straight and tall, which has been wonderful for building her once-very-weak trunk muscles, and it has been a wonderful chance to see her put her, um.....leadership abilities (a.k.a. Napoleon syndrome, bossiness, etc.) to productive use. :-) While I know little-to-nothing about horses, she has always seemed very natural on a horse, and for her, the bigger the better! The kid has no fear! Also, I have found it very exciting that there is a sport Clara can participate in where it doesn't matter if her legs are a little 'crooked'. I certainly don't think that sports are all there is to life, but you always want to know there are options available for your kids if they want them. And while we cannot afford for Clara to 'show horses' in a traditional way, therapy has given her a great opportunity to ride and she is growing so much stronger and improving her balance doing something she LOVES!
The therapeutic ranch where she rides, Reins of Life, has an annual horse show. I wish we could have been there for the whole thing, but Day 1 was when I was in Chicago. They gave the therapy kids an opportunity to ride at the beginning of Day 2...Father's Day. We definitely went and enjoyed our time there, but I didn't think Jeff wanted to spend his entire day there.
Here are some pictures I took from the day. I didn't really get any great ones of her on the horse, Hollywood, because it had monsooned he night before, and while the therapy kids were riding in the inside arena, the guys who take care of the property were outside trying to get the very wet arenas ready for all of the other events.
Of course she wanted to wear her pink cowgirl boots she got for her birthday! For some reason, every time I am about to take her picture with them on, she tips her foot up. I guess this is what cowgirls do in her mind. :-) I also don't have the heart to tell her that she rides English and not Western. At least she's having fun, right?
I know I promised a blog about the Mitochondrial Disease Symposium I went to last weekend, but it always takes me a few days to process it all. So, before I write about that, I thought I would share with you some of the highlights of Clara's horse show last weekend. Oh what fun!
I know I have said it a hundred times before, but it takes my breath away to see Clara on a horse. She sits up so straight and tall, which has been wonderful for building her once-very-weak trunk muscles, and it has been a wonderful chance to see her put her, um.....leadership abilities (a.k.a. Napoleon syndrome, bossiness, etc.) to productive use. :-) While I know little-to-nothing about horses, she has always seemed very natural on a horse, and for her, the bigger the better! The kid has no fear! Also, I have found it very exciting that there is a sport Clara can participate in where it doesn't matter if her legs are a little 'crooked'. I certainly don't think that sports are all there is to life, but you always want to know there are options available for your kids if they want them. And while we cannot afford for Clara to 'show horses' in a traditional way, therapy has given her a great opportunity to ride and she is growing so much stronger and improving her balance doing something she LOVES!
The therapeutic ranch where she rides, Reins of Life, has an annual horse show. I wish we could have been there for the whole thing, but Day 1 was when I was in Chicago. They gave the therapy kids an opportunity to ride at the beginning of Day 2...Father's Day. We definitely went and enjoyed our time there, but I didn't think Jeff wanted to spend his entire day there.
Here are some pictures I took from the day. I didn't really get any great ones of her on the horse, Hollywood, because it had monsooned he night before, and while the therapy kids were riding in the inside arena, the guys who take care of the property were outside trying to get the very wet arenas ready for all of the other events.
If you have pink cowgirl boots, you should also have a pink bandana, right?
Alyssa got her all set with her number. Megan was excitedly by her side all day.
They all have so much fun at these events!
I know this is too close-up and a little blurry, but I loved it! you can see her little snaggle-toothed mouth and the pin her therapist in Georgia, Ms. Peggy, gave her at her first show. Very special. :-)
Waiting with Ms. Beth for her turn. Those little bowed legs definitely work for her in riding pants. :-)
Riding tall! She definitely puts on her 'riding face'. She doesn't respond at all when we wave at her. :-) Hollywood looked especially lovely, as well.
That's her at the end. The judge is talking to her and giving her a trophy.
So proud!
Clara got a First Place trophy! She was one of three who tied for first place. I think that is so cute. :-)
This cracked me up. She put this hat on and then said, "There. That's better." Was the helmet cramping her style?
Happy Father's Day!
You know we had to take our traditional 'sleeping' picture!
Silly!!
It took her a while to put that trophy down. It is now proudly displayed in her room with her ribbons from Butterfly Dreams, her original pink camouflage helmet, her big butterfly Ms. Laura made for her, and the picture Ms. Peggy so beautifully framed for her before we moved. She is building up quite a collection....a very special collection.
Blessings!
Jeannie
Sunday, June 19, 2011
A Few Good Men
Hi Everyone!!
Things have been wild and woolly here! Wednesday, after delivering most of our family to their overnight homes, we went to Ann Arbor to spend the night to get ready for our appointment at the U of M first thing Thursday morning. After her appointments were done, we came home Thursday evening and then I left before daylight Friday morning to head to Chicago for the UMDF Symposium (United Mitochondrial Disease Foundation). I got home from Chicago last last night (Saturday), and then we got up bright and early today to go to Clara's horse show. So....I have lots to tell you and pictures to show, but first, there are a few important men in my life I want to honor today.
First....my Daddy...or "Deddy" as he is known to me. I am the only one of his four children that calls him that. The other ones call him 'Dad', but no matter what you call him, I am so thankful he's mine. I tend to have a very hard time writing about him, I think because I love him soooo much. Once in college, as a final exam in my Psychology class, I had to write an essay on someone I greatly admired. I thought that would be my greatest one ever because it was about Deddy. However, I bumbled all the way through it because there was so much there, I just couldn't get it all together. So while this will not be my most eloquent writing, by any stretch of the imagination, I will just tell you that I LOVE MY DEDDY! He has always been there for me at every stage of my life, and while he is not perfect (who is?), and even if he didn't respond the way I thought he should, I never doubted he would be there. When I was thirteen, he and Bev, very sacrificially, saved me from an environment that I knew, even then, I could not thrive in. I know that without that move, I would not be who I am today. He made sure I made it to every single band and chorus concert, school function, awards ceremony, church activity or choir or orchestra practice, etc...and believe me, there were many. He was always the Dad who would show up to drive the van to Savannah for All-State Band and Chorus in his most obnoxious clothing, and unlike many children, I was always proud to have him there. :-) He had a pair of 'Jams" that were SO LOUD....do you remember Jams? And while I do not get to see him as much as I want to, there is never a day that goes by that I don't think of my wonderful Deddy. Happy Father's Day, Deddy!!
And the other man is, of course, the father of my children....Jeff....my hunka, hunka burnin' love. :-) I could never have asked for a better father for my four precious girls. People often pity him because he lives in a house full of estrogen, but I can tell you, he LOVES it! He used to tell me he wanted five girls (and if you count me or the dog, he has them), and I think God designed him perfectly to father these girls. He is so patient and understanding and is able to find the humor in every situation. I have no doubt that these girls are going to leave our home one day knowing they were loved unconditionally by their adoring father. I think that goes a long way with a little girl. I can also tell you that he points them to the cross and does everything he can possibly do to make sure these girls know their Jesus. I am so blessed to have a husband who is the spiritual leader of our home, and I can tell you, it did not come naturally for him. God has used the last 16 years to grow him into that role (and God has also had to teach his strong-headed wife how to step aside and let him lead). I love you, honey. Happy Father's Day!!
Happy Father's Day to all the Daddies out there!!
Much Love,
Jeannie
Things have been wild and woolly here! Wednesday, after delivering most of our family to their overnight homes, we went to Ann Arbor to spend the night to get ready for our appointment at the U of M first thing Thursday morning. After her appointments were done, we came home Thursday evening and then I left before daylight Friday morning to head to Chicago for the UMDF Symposium (United Mitochondrial Disease Foundation). I got home from Chicago last last night (Saturday), and then we got up bright and early today to go to Clara's horse show. So....I have lots to tell you and pictures to show, but first, there are a few important men in my life I want to honor today.
First....my Daddy...or "Deddy" as he is known to me. I am the only one of his four children that calls him that. The other ones call him 'Dad', but no matter what you call him, I am so thankful he's mine. I tend to have a very hard time writing about him, I think because I love him soooo much. Once in college, as a final exam in my Psychology class, I had to write an essay on someone I greatly admired. I thought that would be my greatest one ever because it was about Deddy. However, I bumbled all the way through it because there was so much there, I just couldn't get it all together. So while this will not be my most eloquent writing, by any stretch of the imagination, I will just tell you that I LOVE MY DEDDY! He has always been there for me at every stage of my life, and while he is not perfect (who is?), and even if he didn't respond the way I thought he should, I never doubted he would be there. When I was thirteen, he and Bev, very sacrificially, saved me from an environment that I knew, even then, I could not thrive in. I know that without that move, I would not be who I am today. He made sure I made it to every single band and chorus concert, school function, awards ceremony, church activity or choir or orchestra practice, etc...and believe me, there were many. He was always the Dad who would show up to drive the van to Savannah for All-State Band and Chorus in his most obnoxious clothing, and unlike many children, I was always proud to have him there. :-) He had a pair of 'Jams" that were SO LOUD....do you remember Jams? And while I do not get to see him as much as I want to, there is never a day that goes by that I don't think of my wonderful Deddy. Happy Father's Day, Deddy!!
I love this picture. This is Deddy and my silly brothers. The brother on the right, Thomas, is also a wonderful Daddy to a precious little boy.
Deddy, Clara, and Megan in their 'bubba' teeth. He will do anything....ANYTHING for a laugh!
Deddy and Bev with half of their grandchildren.
And the other man is, of course, the father of my children....Jeff....my hunka, hunka burnin' love. :-) I could never have asked for a better father for my four precious girls. People often pity him because he lives in a house full of estrogen, but I can tell you, he LOVES it! He used to tell me he wanted five girls (and if you count me or the dog, he has them), and I think God designed him perfectly to father these girls. He is so patient and understanding and is able to find the humor in every situation. I have no doubt that these girls are going to leave our home one day knowing they were loved unconditionally by their adoring father. I think that goes a long way with a little girl. I can also tell you that he points them to the cross and does everything he can possibly do to make sure these girls know their Jesus. I am so blessed to have a husband who is the spiritual leader of our home, and I can tell you, it did not come naturally for him. God has used the last 16 years to grow him into that role (and God has also had to teach his strong-headed wife how to step aside and let him lead). I love you, honey. Happy Father's Day!!
Happy Father's Day to all the Daddies out there!!
Much Love,
Jeannie
Thursday, June 16, 2011
Clara
In my life B.C. (Before Children), when I used to be a music teacher, one of my favorite songs to teach to the younger children was a song by Hap Palmer called Oh, What a Miracle. There was a lot to the song, but the chorus went:
Oh, what a miracle.
Oh, what a miracle,
Every little part of me.
I'm something special, so very special.
There's nobody quite like me.
When I think about Clara's life, especially today on her 5th birthday, this song keeps coming to mind. Oh, what a miracle she is. I have learned so much in her life and have been so inspired by her strength and determination. More than anything, I am in awe of the Creator of the universe who chose to put this fabulous little creation into my life. "He formed her inward parts; He knitted her together in my womb. I praise Him because Clara is fearfully and wonderfully made. I know that full well. (Ps. 139: 13-14) There is nothing about Clara that is a mistake, an oversight or an accident. I know, with all my heart that God has big plans for this sweet girl, and heaven knows, I love her more than life itself.
Happy Birthday, Sweet Girl!
Clara has had a very dramatic birthday week, to say the least. We knew that she would be going to the geneticist at the U of M on her birthday, because that was the closest appointment they had, and we had to wait four months for that one. However, we did not know that she was going to be Superman on the swing and knock her front tooth out. The night that happened we went to the E.R., where they started her on an antibiotic and told us to call the dentist in the morning. When we called, our dentist referred her to a pediatric dentist in South Bend. Despite his very full schedule, he was willing to work us in. At first he was puzzled that her whole tooth fell out, and when he saw the tooth, he was afraid there was some left in her gums. There was a lot of root attached to the tooth (more than I have ever seen), but he said there should have been more. He also was puzzled because for the way it came out, there should have been much more trauma to her gums. Upon doing an x-ray, he found that her front teeth have very short roots...all of them. I asked him if it could anything to do with the Hypophosphatemic Ricketts (made sense to me since it is all bone related), and he said, "BINGO!" (He was a very high-energy fella). He said that children with that condition have short roots and usually lose their baby teeth faster and easier...so be prepared. He also said that the Ricketts puts her at higher risks of abscesses. He said they are usually very manageable, but we need to keep an eye on her mouth.
Very interesting.
So, PRAISE GOD she is okay. I am thankful that she was not hurt worse and didn't break anything else in her body, and I am thankful for the new information.
When we left there,we went straight home, picked up the rest of the family, drove to Buchanan to drop the dog off with some friends, drove to Berrien Springs to drop off three of our children with some other friends, and then drove to Ann Arbor to go to Clara's appointment.
The short version of that appointment is that we LOVE that doctor and we are getting MUCH closer to answers. He is running some further gene testing before he makes a definitive decision, but right now, he is leaning the same way as her geneticist in Atlanta, Dr. Kendall. I will elaborate further when I have more information and after I have had a little more time to process what we were told. We left the main U of M hospital building and went to another U of M doctor at her office across town to have Clara fitted for orthodics. I think Miss Clara is well on her way!
Tomorrow I leave for the United Mitochondrial Disease Foundation Symposium that just happens to be in Chicago this year. I have been a little torn as to whether or not I should go, but have decided that knowledge is good, whether we end up needing that specific knowledge or not. Insurance will cover the symposium and gas, so that definitely helps! I am looking forward to seeing some sweet friends that I have met on the Mito Road. Mito Mom will be there, as well as a Mito mom I have met, and become friends with, through this blog. I am excited! (...and very, very tired.) :-)
Of course, Sunday is Father's Day, and it looks like we will be celebrating at a horse show. The therapeutic ranch where Clara rides is having a show and the therapy kids are riding on Sunday morning. We typically do not let our kids participate in ANY activity that interferes with church, but we are making an exception for this one. The opportunity for her to ride in a show does not come around that often and she LOVES it! Alyssa will volunteer, as well, so I think it will be a fun family day. Of course, we will honor the Daddy in this house, too. It just may come later in the day. :-)
Just as an insignificant side note...apparently I still do not speak 'northern-ese". Did you know I have a southern accent? It was news to me when I got here! It is still not uncommon to get 'Sprite' instead of 'fries' at a drive-thru, but when we were in the E.R. the other night, the patient representative kept asking me my name and writing "Janie". While I love that name (and have an aunt whom I adore by that name), I did have to chuckle. :-)
Thank you, from the bottom of my heart, to all of you who remember Clara and our family in your prayers. Please keep praying...we are getting close to answers!!
Much Love,
Jeannie
Oh, what a miracle.
Oh, what a miracle,
Every little part of me.
I'm something special, so very special.
There's nobody quite like me.
When I think about Clara's life, especially today on her 5th birthday, this song keeps coming to mind. Oh, what a miracle she is. I have learned so much in her life and have been so inspired by her strength and determination. More than anything, I am in awe of the Creator of the universe who chose to put this fabulous little creation into my life. "He formed her inward parts; He knitted her together in my womb. I praise Him because Clara is fearfully and wonderfully made. I know that full well. (Ps. 139: 13-14) There is nothing about Clara that is a mistake, an oversight or an accident. I know, with all my heart that God has big plans for this sweet girl, and heaven knows, I love her more than life itself.
Happy Birthday, Sweet Girl!
Clara has had a very dramatic birthday week, to say the least. We knew that she would be going to the geneticist at the U of M on her birthday, because that was the closest appointment they had, and we had to wait four months for that one. However, we did not know that she was going to be Superman on the swing and knock her front tooth out. The night that happened we went to the E.R., where they started her on an antibiotic and told us to call the dentist in the morning. When we called, our dentist referred her to a pediatric dentist in South Bend. Despite his very full schedule, he was willing to work us in. At first he was puzzled that her whole tooth fell out, and when he saw the tooth, he was afraid there was some left in her gums. There was a lot of root attached to the tooth (more than I have ever seen), but he said there should have been more. He also was puzzled because for the way it came out, there should have been much more trauma to her gums. Upon doing an x-ray, he found that her front teeth have very short roots...all of them. I asked him if it could anything to do with the Hypophosphatemic Ricketts (made sense to me since it is all bone related), and he said, "BINGO!" (He was a very high-energy fella). He said that children with that condition have short roots and usually lose their baby teeth faster and easier...so be prepared. He also said that the Ricketts puts her at higher risks of abscesses. He said they are usually very manageable, but we need to keep an eye on her mouth.
Very interesting.
So, PRAISE GOD she is okay. I am thankful that she was not hurt worse and didn't break anything else in her body, and I am thankful for the new information.
When we left there,we went straight home, picked up the rest of the family, drove to Buchanan to drop the dog off with some friends, drove to Berrien Springs to drop off three of our children with some other friends, and then drove to Ann Arbor to go to Clara's appointment.
The short version of that appointment is that we LOVE that doctor and we are getting MUCH closer to answers. He is running some further gene testing before he makes a definitive decision, but right now, he is leaning the same way as her geneticist in Atlanta, Dr. Kendall. I will elaborate further when I have more information and after I have had a little more time to process what we were told. We left the main U of M hospital building and went to another U of M doctor at her office across town to have Clara fitted for orthodics. I think Miss Clara is well on her way!
Tomorrow I leave for the United Mitochondrial Disease Foundation Symposium that just happens to be in Chicago this year. I have been a little torn as to whether or not I should go, but have decided that knowledge is good, whether we end up needing that specific knowledge or not. Insurance will cover the symposium and gas, so that definitely helps! I am looking forward to seeing some sweet friends that I have met on the Mito Road. Mito Mom will be there, as well as a Mito mom I have met, and become friends with, through this blog. I am excited! (...and very, very tired.) :-)
Of course, Sunday is Father's Day, and it looks like we will be celebrating at a horse show. The therapeutic ranch where Clara rides is having a show and the therapy kids are riding on Sunday morning. We typically do not let our kids participate in ANY activity that interferes with church, but we are making an exception for this one. The opportunity for her to ride in a show does not come around that often and she LOVES it! Alyssa will volunteer, as well, so I think it will be a fun family day. Of course, we will honor the Daddy in this house, too. It just may come later in the day. :-)
Just as an insignificant side note...apparently I still do not speak 'northern-ese". Did you know I have a southern accent? It was news to me when I got here! It is still not uncommon to get 'Sprite' instead of 'fries' at a drive-thru, but when we were in the E.R. the other night, the patient representative kept asking me my name and writing "Janie". While I love that name (and have an aunt whom I adore by that name), I did have to chuckle. :-)
Thank you, from the bottom of my heart, to all of you who remember Clara and our family in your prayers. Please keep praying...we are getting close to answers!!
Much Love,
Jeannie
Tuesday, June 14, 2011
All the King's Horses and All the King's Men...
...couldn't put Clara's tooth back in her mouth again.
This has been a particularly nostalgic week for me. It is hitting me hard that my babies are growing up. Where did 4 and 5 years go? I have loved every moment with them and still don't feel like I have had enough. I want them to be little for at least another ten years.
I mean it. It's just killing me.
Needless to say, I was certainly not ready for either of them to lose a tooth. I am not even ready to stop calling them "Babies".
But today, I was jolted into my new reality.
Clara was swinging in the back yard. Actually, she was playing "Superman" on the swing in the back yard, where she swings on her belly and puts her arms out like she's flying. I did not know this game existed until today...when it was too late.
Apparently, she flipped out of the swing and slammed her face into the big tree root that runs right under the swing. Alyssa came running into the house with her, blood everywhere. In Clara's words, she was "screaming her head off". I very calmly got a washcloth and wet it with cold water, put it on her mouth, and sat on the couch to assess the damage. When I lifted her head back to look in her mouth, and only saw a gaping hole where her front, left tooth used to be, I almost screamed my head off, too.
I asked Alyssa to go outside and get her tooth...she had to dig it out of the root. It was covered in dirt.
So, given the force of her impact, the amount of blood, and the way her tooth came out (root and all), I took her to the Emergency Room. I wanted to make sure there was no major damage done to her bone structure and was concerned she may need an antibiotic. As it turns out, she did need an antibiotic and they are not sure of the damage that was done. We have to call our dentist in the morning because he will know exactly what he is looking for. In the meantime, more ibuprofen for pain. She is doing great, though, and is actually getting a kick out of being snaggle-tooth. Everyone else around her thinks it is "so cute", but I am not there yet. I am still grieving the tooth.
I'll be okay.
She actually looks a lot like her Uncle Thomas at this age. I wish I had a picture. He was missing his front left tooth for most of his childhood until his permanent teeth grew in.
So, here she is. My big girl, two days before her 5th birthday. My little snaggle-tooth.
Tomorrow we leave for the University of Michigan to go to her appointment with the geneticist on Thursday morning. Please keep us in your prayers. I am also going to try to get her into the dentist before we leave. That might take a miracle....pray hard! And no more Superman at the Bryant house...
Much Love,
Jeannie
This has been a particularly nostalgic week for me. It is hitting me hard that my babies are growing up. Where did 4 and 5 years go? I have loved every moment with them and still don't feel like I have had enough. I want them to be little for at least another ten years.
I mean it. It's just killing me.
Needless to say, I was certainly not ready for either of them to lose a tooth. I am not even ready to stop calling them "Babies".
But today, I was jolted into my new reality.
Clara was swinging in the back yard. Actually, she was playing "Superman" on the swing in the back yard, where she swings on her belly and puts her arms out like she's flying. I did not know this game existed until today...when it was too late.
Apparently, she flipped out of the swing and slammed her face into the big tree root that runs right under the swing. Alyssa came running into the house with her, blood everywhere. In Clara's words, she was "screaming her head off". I very calmly got a washcloth and wet it with cold water, put it on her mouth, and sat on the couch to assess the damage. When I lifted her head back to look in her mouth, and only saw a gaping hole where her front, left tooth used to be, I almost screamed my head off, too.
I asked Alyssa to go outside and get her tooth...she had to dig it out of the root. It was covered in dirt.
So, given the force of her impact, the amount of blood, and the way her tooth came out (root and all), I took her to the Emergency Room. I wanted to make sure there was no major damage done to her bone structure and was concerned she may need an antibiotic. As it turns out, she did need an antibiotic and they are not sure of the damage that was done. We have to call our dentist in the morning because he will know exactly what he is looking for. In the meantime, more ibuprofen for pain. She is doing great, though, and is actually getting a kick out of being snaggle-tooth. Everyone else around her thinks it is "so cute", but I am not there yet. I am still grieving the tooth.
I'll be okay.
She actually looks a lot like her Uncle Thomas at this age. I wish I had a picture. He was missing his front left tooth for most of his childhood until his permanent teeth grew in.
So, here she is. My big girl, two days before her 5th birthday. My little snaggle-tooth.
Tomorrow we leave for the University of Michigan to go to her appointment with the geneticist on Thursday morning. Please keep us in your prayers. I am also going to try to get her into the dentist before we leave. That might take a miracle....pray hard! And no more Superman at the Bryant house...
Much Love,
Jeannie
Monday, June 13, 2011
Sunburst...and a Few Other Things
Hi Everyone!
A lot has happened since I last posted, and I wanted to try to get you up-to-date.
As you know, we were greatly anticipating the 'big race'. I was disqualified from the whole thing because of my Achilles tendon, but the rest of the family did great! On Friday night, Jeff and the girls walked the 2 mile Family Fun Run/Walk. Clara rode in her stroller, mostly, and Megan rode on Alyssa's back for much of the distance, so Alyssa got the best workout of all! They all made it back in good time and got gold medals and popsicles to boot! These pictures aren't the greatest, because I forgot my camera (Go Mom!) and had to take them with my mp3, but it's better than nothing. :-)
A lot has happened since I last posted, and I wanted to try to get you up-to-date.
As you know, we were greatly anticipating the 'big race'. I was disqualified from the whole thing because of my Achilles tendon, but the rest of the family did great! On Friday night, Jeff and the girls walked the 2 mile Family Fun Run/Walk. Clara rode in her stroller, mostly, and Megan rode on Alyssa's back for much of the distance, so Alyssa got the best workout of all! They all made it back in good time and got gold medals and popsicles to boot! These pictures aren't the greatest, because I forgot my camera (Go Mom!) and had to take them with my mp3, but it's better than nothing. :-)
The little girls wore their 'gold medals' for days!
The next morning, Jeff reported nice and early for his 5K. I was very concerned about him running on his foot (and against his doctor's advice), but I must say, I have never been so proud of anyone in my whole life! He went from not being an athlete in any shape or form, to running a 5K on an injured foot and within his goal time. His goal was to run it in less than 30 minutes and he did it in 28 minutes and 10 seconds! I wish I had pictures of him crossing the finish line, but my camera doesn't work that early (or my car, either, for that matter.)
We both went to the podiatrist for another hot date this morning (woo-hoo!) and Jeff has been released. I, on the other hand, have moved from "trying to get rid of the stabbing pain in my feet so I can exercise" mode to "do everything we can to keep my Achilles tendon from ripping". Isn't that nice? After a few more weeks of trying to get it healed, we will continue trying to deal with the other. By then, Jeff will be running marathons and I will be back to trying to get fit all by myself. Oh well. I am still so proud of him!
We currently have two 4 year-old girls at our house! Megan was 4 last week and Clara will be 5 this week. We will have a party of some sort when we go to Georgia, but we did want to commemorate their special day here, as well. The Rohls, our Michigan family, came over, as well as one of Clara's little friends. It was a fun day!
Clara and Megan with the Rohls.
Clara could not have been happier about FINALLY getting some pink cowgirl boots!She has barely taken them off since she got them.
Megan loving on Clara while we sang "Happy Birthday" to her. These girls adore each other!
Megan "helping" me with her blueberry cake. :-)
Megan wanted a blueberry cake and Clara wanted a strawberry cake with a smiley face.
Birthday girl!
When we finished singing "Happy Birthday" to each of them, they hugged each other and Megan exclaimed, "Clara, we're both big girls now!!"
Please be in prayer for us this week as we travel back to the University of Michigan. This week's appointment is a big appointment and one we have been waiting on for quite some time. We will be seeing the geneticist that deals with bone diseases. This is one of the last big steps towards finally getting answers about Clara. Please pray for wisdom for the doctor, a clear mind for both of us so we can ask the right questions, and that God would continue to provide everything we need as we travel in the way of safety and provision. We'll keep you up-to-date!
Have a blessed day!!
Jeannie
Tuesday, June 7, 2011
My Baby
Megan
Meg
Meggie
Meg-Pie
Mega-linda (I'm not sure where this came from, but I tell her it means "my beautiful Megan", since linda is Spanish for beautiful).
Punky Doodle
Flo
Flo-linda.....
We call this little girl many things, but mostly, we call her, "A BLESSING!"!
When I first found out she was on her way, I hyperventilated....for months. Clara was only two-and-a-half months old when I got pregnant with her, and four months old when we found out. However, four years later, I can't imagine life without this sweet girl in my life. God, in His infinite wisdom, knew that if we waited any longer to have another baby, we would have been afraid to when we found out that Clara had a genetic disorder. He also knew Clara would need a baby sister to love her, encourage her, and challenge her every single day. I believe, with all my heart, that keeping up with Megan is what has brought Clara as far as she has come with her physical strength.
She is sunshine on a cloudy day.
She is sweet to the core.
She is tender-hearted.
She regularly puts my face in her little hands and says, "Mommy, I love you so very much."
She is an encourager, already.
During some of our darkest moments, she has cheered us up without fail. There is never a day that goes by that this little one does not make me laugh and smile.
She has her Daddy's charm. (...and his heart, too, for that matter.) :-)
She is as busy as anyone I know and she loves to run. She never walks anywhere. She flits, bounces, jumps, hops, skips, or dances to her next location. Her favorite thing to do is hop on one foot!
She never met an accessory she didn't like. :-)
Did I mention how much she loves her sisters?
If I could, I would freeze her at this age forever.
Happy 4th Birthday, my Little Sunshine! Mommy loves you more than words can say!
Have a Great Day!
Meg
Meggie
Meg-Pie
Mega-linda (I'm not sure where this came from, but I tell her it means "my beautiful Megan", since linda is Spanish for beautiful).
Punky Doodle
Flo
Flo-linda.....
We call this little girl many things, but mostly, we call her, "A BLESSING!"!
When I first found out she was on her way, I hyperventilated....for months. Clara was only two-and-a-half months old when I got pregnant with her, and four months old when we found out. However, four years later, I can't imagine life without this sweet girl in my life. God, in His infinite wisdom, knew that if we waited any longer to have another baby, we would have been afraid to when we found out that Clara had a genetic disorder. He also knew Clara would need a baby sister to love her, encourage her, and challenge her every single day. I believe, with all my heart, that keeping up with Megan is what has brought Clara as far as she has come with her physical strength.
She is sunshine on a cloudy day.
She is sweet to the core.
She is tender-hearted.
She regularly puts my face in her little hands and says, "Mommy, I love you so very much."
She is an encourager, already.
During some of our darkest moments, she has cheered us up without fail. There is never a day that goes by that this little one does not make me laugh and smile.
She has her Daddy's charm. (...and his heart, too, for that matter.) :-)
She is as busy as anyone I know and she loves to run. She never walks anywhere. She flits, bounces, jumps, hops, skips, or dances to her next location. Her favorite thing to do is hop on one foot!
She never met an accessory she didn't like. :-)
Did I mention how much she loves her sisters?
If I could, I would freeze her at this age forever.
Happy 4th Birthday, my Little Sunshine! Mommy loves you more than words can say!
Have a Great Day!
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