Whew! We survived our two whirlwind days in Atlanta. This will have to be quick because I am about to fall over, but I am afraid there will be no other time to do this. The next few days aren't any slower.
Yesterday, Clara, Ms. Peggy (her PT that does her hippotherapy), and I went to Atlanta to visit the orthopedic doctor. He came highly recommended by multiple sources....doctors, PT's, friends, and patients. We were not disappointed. He was very thorough, and the short of it is that Clara still has her tibial torsion and he hopes it will get better by the time she is 9 years old, as that is typically when it straightens itself out. If not, she will have to have surgery, but we are not going to worry about that and will cross that bridge if, and when, we come to it. He was concerned about the length of her femur and humerus and said it would be worth consulting with a geneticist. Well, what do you know? That was who we saw today. :-)
Clara has had many, many quirky things going on since she was born, and I have always said that all these things were like puzzle pieces and had to add up to something. Over and over I have been told, "no", but for the first time, I had a doctor look at me and tell me that Clara is like a puzzle, and we just need to fit together the pieces. FINALLY!! Someone who has the expertise and is willing to take the time to figure out what all we are dealing with. I do not have all of my notes in front of me, so I will not be able to put in all the "big" words, but the short of it is:
...that every test that has been done on a urine sample of hers has come back with "ketosis". No one should be in a state of ketosis all the time, so there is a possibility she has a disorder that relates to this. We are doing further tests and will hopefully know that, for sure, soon. I think it is fairly treatable, but not curable.
Her leg length could indicate that she has a form of dwarfism. Whatever the word for that is, she would be the "hypo" version, so not a really little person, but still smaller than most typical people. She is already short for her age, and considering that Jeff and I are both above average in height is more confirmation. She will need a skeletal survey to determine that, and even if she does have it, it will probably not shorten her life. It will just be something we have to monitor, so again, I don't have the energy to worry about it right now. I will cross that bridge if, and when, we get to it.
There are many things I have noticed from the beginning (I don't want to discuss here for reasons of privacy), that could possibly indicate a chromosomal problem. Again, we are not to that bridge.
So what part does the mito play in all of this? I am not sure. We (Dr. Kendall, Jeff, and I) are taking a step back and taking a fresh look at our Clara. Her issues do not fit neatly into the "mito" package, and this is the first doctor to take the time to help us figure it out. I cannot express in words how EXTREMELY grateful we are for this doctor. She is an angel from heaven and I will thank the Lord for her every day of my life. She has such love and compassion, as does her husband who runs her practice with her.
I know this is short, especially for me, but when I say I am tired, I am really about to fall over. Before I go, however, I would like to thank:
Ms. Peggy for taking time out of your life to go to our appointment yesterday. We are so thankful for the way you have loved and cared for Clara. Thanks for helping me to process and understand all the doctor had to say. We love you!
Meredith and Ms. Linda who came to my house and packed boxes like crazy while we were gone today.
The sweet friends who are coming tomorrow to pack boxes.
Thomas and Diana for keeping the girls today and tomorrow. We love you both and are so glad you and the girls enjoy each other so much.
Everyone who prays for Clara, and for not tiring of praying for her. We still have a long road ahead of us and greatly appreciate your prayers.
Our Atlanta friends who had us over for dinner tonight after the appointment. We thoroughly enjoyed our time with you, and wish it could have been longer.
The reality that we are leaving is starting to sink in and I am already getting homesick. I am thankful, however, that I have such a big distraction right now. Otherwise, I think I would obsess over some of the things I learned the last two days, as if obsessing helps.
Tomorrow we pack some more and then we will be gone Friday and Saturday and busy most of Sunday. We do have another appointment with Dr. Kendall on Wednesday that we did not expect, but are thrilled to have, so busy times are here. I will try to post updates as frequently as I can.
Love you all!!
Jeannie
Wednesday, September 15, 2010
Monday, September 13, 2010
A Big Week Ahead
After re-reading my last post, I think I must have been more tired than I thought. I hope it made a little bit of sense, even if not well written. :-)
Things are going well here in our house. Just busy. Very, very busy. Yesterday, my mother-in-law took the girls, all four of them, to the circus. They really had a blast! The best part was that Jeff and I were able to get a ton of work done in the house without having to stop to play "referee" or "chef" or a multitude of other careers we have taken on since becoming parents. :-) My camera is still on its way back from Michigan (oh, how I miss it) and the three disposable ones I bought are all used up, but when they got home yesterday, Clara was running around the house with a blinking clown nose and a really tall hat that came filled with cotton candy. It was so cute....I wish I could share a picture. She was tired, but still so much better than she was on Friday. :-) Alyssa played along because, you know, she is too old to have fun any more. She is 12 years old, for crying out loud! Emilie and Megan were high on cotton candy and life was just good. Everyone went to bed early, though, and had no trouble getting to sleep.
This is a big week for us. We have two back-to-back appointments this week that we have been anticipating for quite a while. On Tuesday, we go to see the orthopedist. Our wait for him has been the longest, but I am praying it will be worth it. I am praying for some answers.... We need to know what has caused Clara's legs to quit growing as they should, and if there is anything we can do to fix the shape of them. In the past we have been told that there was just not enough muscle tone in her legs to fix them, because anything they did to straighten the bones, the muscles would just not be able to hold in place. My hope is that she has grown strong enough this past year to make that treatment effective. We would like to avoid surgery, at all cost. One of her physical therapists is going to this appointment with us to help us ask all the right questions and understand all of our answers. This is a huge blessing!
The other appointment, I am very excited about. We finally go to the Mito Specialist! Woo-hoo! I may seem a little too excited, but it is for good reason. Clara had her muscle biopsy, a very involved procedure, last August. We waited until November 4th for results, and even then, we didn't know what we were looking at. (The report consisted of 18 pages of genius-ese). It took nearly a month for the neurologist to get the reports after that, and since the neurogeneticist showed no interest in seeing us back within the next three years, the neurologist gave us a brief explanation of the report and gave her the official diagnosis of "mitochondrial disease". As brilliant as our neurologist is, mito is not his specialty and there have been things arise that we have needed very specific answers for. I found Dr. Kendall, a mito specialist for 20 years, at the conference I went to last month, and I could not be more excited. She has already been wonderful to us, and I am looking forward to getting more answers. There are many things we may never know about Clara, but I want to know all I can so I can do all I can to help her.
Clara is a little anxious about going to more doctors right now. Anytime we have a hospital visit, she is a little more hesitant for a months after that about going to doctors. I can't say I blame her, so please pray for peace for her. Other than that, we are packing, packing, packing this week. Our "other" situation will hopefully be resolved today, so I can share more about that tomorrow (possibly).
I am hoping to send out thank you notes to everyone who has been there for us lately, but as time goes on and the move approaches, I am less optimistic that I am going to get them done before we move. Please know that if you have done ANYTHING for us, prayed for us, kept kids, provided meals, sped us to the hospital, met us at the hospital, offered to meet us at the hospital, gave us boxes, gave us tape, offered your home, called/texted to check on Clara, and the list goes on....know we are so truly thankful for your love and friendship. We will miss you all terribly.
More later!! (Hopefully, with pictures.) :-)
Have a blessed day!
Love,
Jeannie
Things are going well here in our house. Just busy. Very, very busy. Yesterday, my mother-in-law took the girls, all four of them, to the circus. They really had a blast! The best part was that Jeff and I were able to get a ton of work done in the house without having to stop to play "referee" or "chef" or a multitude of other careers we have taken on since becoming parents. :-) My camera is still on its way back from Michigan (oh, how I miss it) and the three disposable ones I bought are all used up, but when they got home yesterday, Clara was running around the house with a blinking clown nose and a really tall hat that came filled with cotton candy. It was so cute....I wish I could share a picture. She was tired, but still so much better than she was on Friday. :-) Alyssa played along because, you know, she is too old to have fun any more. She is 12 years old, for crying out loud! Emilie and Megan were high on cotton candy and life was just good. Everyone went to bed early, though, and had no trouble getting to sleep.
This is a big week for us. We have two back-to-back appointments this week that we have been anticipating for quite a while. On Tuesday, we go to see the orthopedist. Our wait for him has been the longest, but I am praying it will be worth it. I am praying for some answers.... We need to know what has caused Clara's legs to quit growing as they should, and if there is anything we can do to fix the shape of them. In the past we have been told that there was just not enough muscle tone in her legs to fix them, because anything they did to straighten the bones, the muscles would just not be able to hold in place. My hope is that she has grown strong enough this past year to make that treatment effective. We would like to avoid surgery, at all cost. One of her physical therapists is going to this appointment with us to help us ask all the right questions and understand all of our answers. This is a huge blessing!
The other appointment, I am very excited about. We finally go to the Mito Specialist! Woo-hoo! I may seem a little too excited, but it is for good reason. Clara had her muscle biopsy, a very involved procedure, last August. We waited until November 4th for results, and even then, we didn't know what we were looking at. (The report consisted of 18 pages of genius-ese). It took nearly a month for the neurologist to get the reports after that, and since the neurogeneticist showed no interest in seeing us back within the next three years, the neurologist gave us a brief explanation of the report and gave her the official diagnosis of "mitochondrial disease". As brilliant as our neurologist is, mito is not his specialty and there have been things arise that we have needed very specific answers for. I found Dr. Kendall, a mito specialist for 20 years, at the conference I went to last month, and I could not be more excited. She has already been wonderful to us, and I am looking forward to getting more answers. There are many things we may never know about Clara, but I want to know all I can so I can do all I can to help her.
Clara is a little anxious about going to more doctors right now. Anytime we have a hospital visit, she is a little more hesitant for a months after that about going to doctors. I can't say I blame her, so please pray for peace for her. Other than that, we are packing, packing, packing this week. Our "other" situation will hopefully be resolved today, so I can share more about that tomorrow (possibly).
I am hoping to send out thank you notes to everyone who has been there for us lately, but as time goes on and the move approaches, I am less optimistic that I am going to get them done before we move. Please know that if you have done ANYTHING for us, prayed for us, kept kids, provided meals, sped us to the hospital, met us at the hospital, offered to meet us at the hospital, gave us boxes, gave us tape, offered your home, called/texted to check on Clara, and the list goes on....know we are so truly thankful for your love and friendship. We will miss you all terribly.
More later!! (Hopefully, with pictures.) :-)
Have a blessed day!
Love,
Jeannie
Saturday, September 11, 2010
Another One
Many of you have been so sweet to check in on Clara these past few days, and for that, I am so very touched and thankful. If you have left us a message and I have not gotten back to you, please forgive me. Its been nuts! In many cases, I know you are wondering what happened.
Our whole week last week was very emotional. Some tough decisions had to be made, some of them I am still sad about. (I will fill you in more of that later.) Thursday night, my brothers wanted to have movie night at my house. I was very excited, because 1) I love, LOVE spending time with them, and 2) I totally needed the distraction from real life for a little while. Thomas, the oldest of my two younger brothers, has wanted me to see Batman Begins and Dark Knight for quite some time. Drew, the younger of the two, brought his 42" screen TV (yes, I am serious), and Thomas, Diana, and Noah came over with lots of goodies to eat. We watched movies until 2 a.m., thinking my children would sleep until 9:00, as usual. But unfortunately, that was not the case.
Clara woke up around 4:30 a.m., soaking wet. This is unusual for her, and many times this is an indicator of things to come. It can also be an indication of a seizure, which is a very common thing for mito kids, but one we have not had to deal with and hope not to. I cleaned her up, Drew changed her sheets, and I put her back to bed...most of this I do not even remember because I was too out of it. Drew, being the younger brother that he is got a little too much pleasure out of watching me walk around like a zombie and talk gibberish.
Anyway....I digress.
When Clara woke up the next morning, she did not look "right" to me. She was lethargic, wanted me to hold her, and when I served her breakfast, she just laid her head on the table and sucked her thumb. Many of you remember the bad one she had a few months ago, and what the side-effects can be. I immediately checked her blood sugar and ketones, both confirming what I already suspected...she was crashing. I called mito-Mom who agreed, and recommended I call Dr. Kendall, the mito-specialist we are going to next week, even though we have not been to see her yet. I am so glad I did. She recommended that I take her straight to Scottish Rite. It's one place where they don't look at you like you have four heads when you say, "mitochondrial disease", and they are better equipped to deal with children like Clara. She said that she was not being cavalier about it, but in her 20 years of experience, she has seen too many of these kids go down too far, too fast. She gave me her cell pone number and said to call her if I needed her, but that she was going to go ahead and call the hospital and let them know we were coming.
My brothers, Diana, and Noah were still at my house, and totally saved the day! Thomas and Diana stayed with the girls, while Drew drove me and Clara (very efficiently) to the hospital. They got us back very quickly and the doctor came in after only a few minutes. They ran lots of blood work and started IV fluids to bring her sugar back up. The short of is that we won't know the results of her blood work until our appointment on Wednesday, but within 30 minutes I could tell she was already feeling better. She got around 3 hours of fluids and at the end of that time, she had rosy cheeks and a sense of humor again. The ER doctor was pleased with how she looked at that point, so he sent us home.
Today Clara is tired, but looks and acts so much better. THis has made me a true believer in getting IV fluids to get past a crash. It took weeks last time for her to get back to normal. I am so thankful, thankful for friends and family who loves us so much and are faithful to pray for Clara, thankful for doctors who acted quickly, and a brother who drove quickly, to get Clara taken care of. Thankful for my mother-in-law who dropped everything (she was taking care of her own patients at the time) and met us at the hospital. I am thankful for Thomas and Diana for watching the kids and I am thankful for my parents who took us to dinner last night, knowing I would be too exhausted to cook. More than anything, I am thankful for a God who does not make mistakes. As much as I really don't like what Clara is suffering with....I would actually go as far as to say I hate it....I know God is sovereign. All I can do is pray that this somehow brings Him glory. If He wants to bring himself glory by healing her here on this earth, then halleluia, but if He doesn't, then halleluia, too. Otherwise, it's all a waste. We believe that "all things work together for good to those who love the Lord".
There is song by Mercyme called Bring the Rain that I love. It pretty much sums up the way I feel. Here are the words to the chorus:
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I hope this has made a little bit of sense. We are very tired as we continue to pack, clean, take care of children, and do minor repairs on the house. If you feel led to pray for the Bryant family, please pray for complete health between now and when we move, and for strength and perseverance to be able to get it all done. Additionally, we are still in the middle of something kind of big that needs to be resolved quickly. I can't give you details now, but please pray that God will lay everything in place.
Love you, sweet friends!
Jeannie
Our whole week last week was very emotional. Some tough decisions had to be made, some of them I am still sad about. (I will fill you in more of that later.) Thursday night, my brothers wanted to have movie night at my house. I was very excited, because 1) I love, LOVE spending time with them, and 2) I totally needed the distraction from real life for a little while. Thomas, the oldest of my two younger brothers, has wanted me to see Batman Begins and Dark Knight for quite some time. Drew, the younger of the two, brought his 42" screen TV (yes, I am serious), and Thomas, Diana, and Noah came over with lots of goodies to eat. We watched movies until 2 a.m., thinking my children would sleep until 9:00, as usual. But unfortunately, that was not the case.
Clara woke up around 4:30 a.m., soaking wet. This is unusual for her, and many times this is an indicator of things to come. It can also be an indication of a seizure, which is a very common thing for mito kids, but one we have not had to deal with and hope not to. I cleaned her up, Drew changed her sheets, and I put her back to bed...most of this I do not even remember because I was too out of it. Drew, being the younger brother that he is got a little too much pleasure out of watching me walk around like a zombie and talk gibberish.
Anyway....I digress.
When Clara woke up the next morning, she did not look "right" to me. She was lethargic, wanted me to hold her, and when I served her breakfast, she just laid her head on the table and sucked her thumb. Many of you remember the bad one she had a few months ago, and what the side-effects can be. I immediately checked her blood sugar and ketones, both confirming what I already suspected...she was crashing. I called mito-Mom who agreed, and recommended I call Dr. Kendall, the mito-specialist we are going to next week, even though we have not been to see her yet. I am so glad I did. She recommended that I take her straight to Scottish Rite. It's one place where they don't look at you like you have four heads when you say, "mitochondrial disease", and they are better equipped to deal with children like Clara. She said that she was not being cavalier about it, but in her 20 years of experience, she has seen too many of these kids go down too far, too fast. She gave me her cell pone number and said to call her if I needed her, but that she was going to go ahead and call the hospital and let them know we were coming.
My brothers, Diana, and Noah were still at my house, and totally saved the day! Thomas and Diana stayed with the girls, while Drew drove me and Clara (very efficiently) to the hospital. They got us back very quickly and the doctor came in after only a few minutes. They ran lots of blood work and started IV fluids to bring her sugar back up. The short of is that we won't know the results of her blood work until our appointment on Wednesday, but within 30 minutes I could tell she was already feeling better. She got around 3 hours of fluids and at the end of that time, she had rosy cheeks and a sense of humor again. The ER doctor was pleased with how she looked at that point, so he sent us home.
Today Clara is tired, but looks and acts so much better. THis has made me a true believer in getting IV fluids to get past a crash. It took weeks last time for her to get back to normal. I am so thankful, thankful for friends and family who loves us so much and are faithful to pray for Clara, thankful for doctors who acted quickly, and a brother who drove quickly, to get Clara taken care of. Thankful for my mother-in-law who dropped everything (she was taking care of her own patients at the time) and met us at the hospital. I am thankful for Thomas and Diana for watching the kids and I am thankful for my parents who took us to dinner last night, knowing I would be too exhausted to cook. More than anything, I am thankful for a God who does not make mistakes. As much as I really don't like what Clara is suffering with....I would actually go as far as to say I hate it....I know God is sovereign. All I can do is pray that this somehow brings Him glory. If He wants to bring himself glory by healing her here on this earth, then halleluia, but if He doesn't, then halleluia, too. Otherwise, it's all a waste. We believe that "all things work together for good to those who love the Lord".
There is song by Mercyme called Bring the Rain that I love. It pretty much sums up the way I feel. Here are the words to the chorus:
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I hope this has made a little bit of sense. We are very tired as we continue to pack, clean, take care of children, and do minor repairs on the house. If you feel led to pray for the Bryant family, please pray for complete health between now and when we move, and for strength and perseverance to be able to get it all done. Additionally, we are still in the middle of something kind of big that needs to be resolved quickly. I can't give you details now, but please pray that God will lay everything in place.
Love you, sweet friends!
Jeannie
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