This page contains updates on Faith's health. Thanks to all of our friends for their prayers and support!
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18 November 2009
I can not believe how much has happened since we last updated. It is actually a bit overwhelming.
Faith has continued to have dizzy spells. We now believe that she may be having some dysautonomic issues. This means that her body may be having trouble regulating her blood pressure and heart rate. This is not uncommon with mito kids. We are keeping track of Faith's blood pressure and heart rate when she is having dizzy spells and trying to figure out this puzzle.
Faith got her second round of braces on her teeth. It was a breeze for her the second time around. Our orthodontist showed me what Faith's teeth looked like before we did the first round of braces and the palate expander. I couldn't believe what a mess her mouth had been. If we hadn't done the first round of braces, he said we would have been pulling teeth and putting her in head gear. Now that all her adult teeth are in place, we can tweak a few things, and she will have a perfectly, lovely set of teeth in less than 2 years.
Faith had a physical therapy evaluation at Children's Rehab. It was very clear that Faith needs physical therapy. We started this past Monday. We have a wonderful new therapist named Chamar. Faith loves her! She has us doing some great exercises to engage Faith's trunk, arms, legs etc. Faith does her exercises faithfully each morning and afternoon.
Of course you all know the tale by now, my girl fulfilled her lifelong dream of going rollerskating on Monday. She was so happy to be on skates and was having a ball slowly skating around on the carpet. Then one big fall on the carpet and she landed on her wrist. It seemed fine. We iced it and everything seemed to be working just fine. Tuesday morning she woke up in pain. I took her to the pediatrician who sent us to Scottish Rite for an xray. Faith has a buckle fracture in her left radius. It isn't a bad break, but to avoid any further injury they put a short cast on it for three weeks. My girl is still just so happy and telling everyone she meets that she broke her arm rollerskating. It's kind of a badge of honor. She roller skated!! (and just happened to break her arm.)
Today, we had an appointment for Faith with a new doctor who specializes in Scoliosis. This doctor uses the Spinecor brace. Spinecor brace is a softer bracing option than the traditional hard bracing or surgery. Hard bracing is not an option for Faith due to her poor muscle control. Surgery is not an option because the surgery is long and the recovery is hard- not good for a Mito kid unless it is an emergency. I won't go into all the details of Spinecor but if you are interested you can google it. You can even YouTube it and see interviews of moms and kids who are wearing it. When we had Faith's back xrayed today her scoliosis had progressed very rapidly in the last five months. It was scary how much her back had changed. Chance and I had a very long involved conversation with the doctor and between the three of us we made the decision to brace her today. We had no time left to waist. When you are treating scoliosis, the goal is not to fix the spine, but to stop the curve from getting worse. It is critical that we stop the increase immediately. Faith is now wearing the Spinecor 20 hours a day. Most likely you will not be able to tell she is wearing it. It fits nicely under her clothes. It is made to be a dynamic brace. In other words, she is meant to move in it. There is not the extreme restriction you get with a hard brace. It is going to be a long road, but Faith is very motivated. She doesn't want a hard brace, and she definitely doesn't want surgery! She will be in this brace for years. At the very least until she stops growing. She is going to also get a new wardrobe. None of her pants will now fit with the addition of the brace and her tops will need to be much more roomy.
Friends, I continue to be amazed at the things my daughter has to endure just to make it through life in this beautiful body the Lord has given her. She is 11 years old. She will soon be 12, and yet she has been through more procedures, surgeries, therapies and equipment than most people would ever dream of in a life time. She accepts it all. She never complains. She lives her life the way she did Tuesday. "Mommy, don't be upset I broke my arm.... I roller skated!" I think I could write a book on that statement alone. My girl lives her life with such acceptance. It humbles me to my core. There are no tears, no whines, no stubbornness. Just a pure thankfulness to live this life that she has been given. Grateful for each day that comes her way. Thankful for a chance to 'be' in this world for another day. I think my daughter has given me the greatest lesson in "Thanksgiving" that I could have.
May we all be as thankful for our lives. Happy Thanksgiving to you and your families. We appreciate your love and prayers. You are among the many things we are grateful for in life.
5 November 2009
Yesterday, we had our annual meeting with Dr. Kendall, Faith's geneticist and mito specialist. It was great to have a chance to sit down with her and go over all of Faith's information. We have so many wonderful specialists, but Dr. Kendall seems like the one who ties it all together for us. She is our one point person for everything that is happening with our girl. Our main points of discussion with Dr. Kendall were Faith's GI issues, her scoliosis, and her dizzy episodes.
The GI discussion was easy and wonderful! As you know from my last update everything has come back fine from those tests! GI is fine. We are going to keep to this smaller meal schedule because it is giving her more energy and her belly seems to appreciate only having to digest small meals instead of typically larger ones.
In terms of the scoliosis, we can tell that Faith's scoliosis in continuing to increase. We are scheduled to see Dr. Schrader in January at our MDA Clinic visit, but Chance and I have decided to go ahead and make an appointment with him prior to that meeting. If Faith's degree of curve has reached a certain point, then we will need to either have her braced or discuss surgery options. There are problems with both of these solutions. Wearing a brace would be exhausting for her body. She would be in it 23 hours a day and it would force her body to be upright. It would be a lot of work for those muscles and would require a lot of energy from Faith whose body is already in short supply of energy. We want to ask Dr. Schrader what the likelihood of success is with bracing. Would bracing her stop the increase of the curve? Would the likelihood of success warrant the amount of energy it would take? Surgery, if and when the curve was severe enough, would be the next necessary step. Dr. Kendall said this is really only an option when the curve has gotten so severe that it is pushing into vital organs. This is not an easy surgery. It is long (over 2 hours) which is a long time for a mito patient to be under anesthesia, and the recovery is very hard on patients with muscle weakness. However, these are options we need to discuss. Our final questions would be, can we commit to wearing a Theratog daily and start physical therapy again? Would that help stop the progression in any way?
The dizziness issue is hard to figure out. There doesn't seem to be a cause that we can pinpoint. She has been diagnosed with migraine variants and put on Topomax which made a huge difference. She has never had the dizzy spells that last for hours since going on that medication. However, she is having more frequent little dizzy spells, and we aren't comfortable continuing to increase her Topomax medication (a seizure medication that also helps migraines at small doses). One of the side effects of this drug can be decrease in appetite which we certainly don't need for Faith. When Faith has a dizzy spell, she tends to reach for a piece of fruit or a small glass of juice. I have always wondered if the dizzy spells weren't more related to blood sugar than migraine variants. So for the next month, we are going to write down when Faith eats, what she eats, and when she has dizzy spells. We are going to try and figure out what is going on and if it is blood sugar related. If we can regulate it with diet/food, then perhaps we can get her off the Topomax. Faith thought she was having 1 or 2 dizzy spells a day. I found out yesterday that it is really more than that. She is now telling me every time she has one, and she had three between 1:30pm and 7pm yesterday. I think she was having lots of dizziness and not mentioning it. Sad to think you just get used to living with that feeling.
Dr. Kendall examined Faith and found that her trunk, shoulders, arms, and hands have had a definite decrease in strength. So I have scheduled a Physical Therapy evaluation for this coming Tuesday morning and then an Occupational Therapy evaluation for December 1. I am confident we will need to get both of these going again. We are so thankful to live five minutes from the Children's Healthcare Rehab facility where she can have both of these services.
The good news? Well the good news is Faith's GI is great. Her lungs while weak are functioning well and her asthma is under control. Our girl is growing and thriving. She is also a delightful young lady who loves life, Jesus, her friends, and her family. She is happy and has the best belly laugh when she gets really tickled. She handles these challenges in her life so well. I will tell you this is hard on her. We would love your prayers not only for her continued health (we've seen how God can answer those prayers), but for her emotional health as well. She is old enough now to really begin understanding the ways her body is failing her. Several times yesterday she teared up as the adults in the room discussed huge issues in her life. The thought of any more surgeries instantly brings tears. It hurts this Mama's heart to the core. I'm thankful that she is the kind of girl that will still come sit on her Mom's lap when she is feeling sad and scared. I am thankful to have the arms of Jesus when I'm feeling that way! Dr. K. did a wonderful job of talking to Faith and not around her. She is old enough to be part of the discussion, but sadly her parents have to make tough decisions that are not always her first choice.
Please pray for Faith (physical and emotional health). Pray for Chance and I as we make important decisions. Pray for the doctors- for wisdom as they help us gather all the information we need to make good choices for our girl.
I apologize for the long update. Thank you for keeping up to date with us and thank you for your continued love and support. It's hard to put into words the love we feel from all of you!
Blessings, Ann & family
4 November 2009
Dear friends and family,
As I sit here this morning, I realize that is has been over a month (late September) since Faith had her last symptoms of GI issues. What has happened in that time frame? She has had a gastric scope, a Bravo PH test, and a gastric emptying test. Her GI systems has been inspected, x-rayed, poked, prodded, and biopsied. AND friends and family have prayed for her and lifted her up to the Lord in a mighty way! In my last update, I asked for some specific prayer requests. So many of you emailed and called to say you were praying.
Our prayers have been answered! Yesterday, we found out that Faith's GI system is perfect. She does not have GERD, EE, Gastric Reflux, or slow stomach emptying. While her pylorus is misshaped, it is NOT causing her stomach to empty slowly. Faith was taken off Prevacid (acid reflux med) prior to her first procedure in early October. She has been off all her GI meds, and the only change we have made is to reduce the size of her meals and eat healthy snacks between meals. She has been symptom free for over a month and everything is "normal".
Chance and I were stunned by this wonderful news. GI issues are usually the number issue in children with Mitochodrial disease. To receive a clean bill of health in this area brought me to tears. We are crediting this to the Lord, and to the faithful prayers of so many. No matter what happens going forward for this moment in time we know that whatever GI issue she had is gone and at this time her system is perfect. We just aren't used to getting this kind of news from doctors. So today we sit in thankfulness! Thank you, Lord!!
Today we are meeting with Dr. Kendall, Faith's geneticist and Mito doctor. We do have lots of things to discuss with her. We want to talk about all that Faith has been through in the last year and a half since we saw Dr. Kendall. We want to explore why Faith continues to have daily dizziness issues and if that is really Migraine Variants or could it be a blood sugar issue. We want to make sure she is on the right levels of the supplements that seems to help give her more energy. We will show her results of tests (both GI and pulmonary) and talk to her about Faith's continued lung issues. There will be lots to discuss. Plus, it will be good to sit with a doctor who is on the cutting edge of Mito research and education. Dr. Kendall always has the latest news of what is happening in terms of possible treatments or a possible cure in the future. What a blessing to go to her and have the information that Faith's GI is normal.
Thank you, dear friends, for your faithful prayers for our girl. Isn't it wonderful to see the goodness of God displayed so beautifully?
You are such a blessing to our family. We are praying God's blessing on you today and every day!
Blessings,
Ann
PS We will do our best to update the website tonight after our meeting today.
17 October 2009
We don't have a lot of information yet on Faith's procedures. We did hear on Thursday that the biopsies of her lungs and stomach were fine. This tells us for sure that she does not have EE (eosinophilic esophagitis). This was very good news because this would have been very life altering for Faith. Now we are waiting on the Bravo Transmitter test to tell us if she has GERD. My understanding is if that comes back normal, we will then do the stomach emptying procedure at the hospital. This past week we took Dr. Saripkin's recommendation and started having five small meals a day instead of three big ones. Faith feels so much better not only in her stomach, but she says her energy level is so much better throughout the day. We've had to learn to adjust our homeschool day with more frequent stops. We seem to be thinking about food a lot, but we had a wonderful list of healthy snack from all our email friends. It was a wonderful week. We will update when we have the rest of the information.
Today was the "All Aboard for a Cure" Mito walk in Norcross, GA. This was a wonderful event with all proceeds going directly to the UMDF. My dad, stepmom, the Davis family, and my band director from high school (who happens to be the Mayor of Norcross GA now) all came out to support our girl. Lisa Higgins, the organizer of the event, told me that 592 people pre-registered for the event. I can't wait to hear how many people were there and how much money it was raised. Even though it was freezing cold, there were huge crowds of people. I am including some pictures form the event. Faith and another mito friend, Ken Ingram, had the honor of cutting the ribbon to start the event. Thank you to everyone who support us!!
Faith about to tear the ribbon for the start of the race
Faith and Ken Ingram tearing the ribbon
Faith's poster
Mr. J and our family
Team Faith4Faith
9 October 2009
Friends and family,
Again, thank you for your prayers and notes today. It is amazing to sit here in the hospital and be able to read your word of encouragement for our family and for Faith.
Unfortunately, Faith did get sick again post surgery (but only once). The anesthesia team was so wonderful and very quick to give her additional meds to help get it under control. Those meds knocked her out and she is sleeping peacefully next to us. We headed home around 4:15pm. Sadly, no grilled cheese and milkshake today.
We did talk to Dr. Saripkin right after the procedure. He gave us some amazing pictures of the inside of Faith's esophagus and stomach. I guess there is good news, bad news, and more news to come. The good news is her esophagus looked great. Really no evidence of reflux there at all (i.e., no damage from acid). Her stomach also looked good. He did take "pinch" biopsies of both areas so that pathology can confirm that thing "are" as good as they "look".
The bad news is that there was more stomach acid sitting in her stomach than they would expect to see in someone who hadn't eaten since 7pm the night before and had only had fluids in the early hours and nothing 4+ hours prior to the procedure. Also, the pylorus (between the stomach and small intestine) was misshaped. It should look curled but instead it was pretty straight. It was more narrowed than it should be. He was able to get the scope through it but it took two people working the scope to make it happen. So, this means that the area that takes fluids from the stomach to the small intestine isn't working exactly the way it should. It is working slowly and therefore is causing slow emptying of the stomach acid.
There are ways to treat this. One is through a low dose antibiotic that encourages the area to work a little harder. Also Faith will most likely need to start eating six small meals a day. Also, she will need to watch what she is eating- avoiding fattier foods and foods that are harder to digest. Dr. Saripkin feels that it must be related to her mitochondrial disease. It is really just another muscle in her body that is starting to not be able to keep up the way it should.
A transmitter was placed in her esophagus to measure her acid for the next 48 hours. If you see Faith between now and Sunday afternoon, you will see her walking around with a cool harness pack that contains a machine that will be documenting her acid levels for 48 hours. Around Wednesday or Thursday, Dr. Saripkin will call and give us all the results of the biopsies and the transmitter test. He is guessing that it is going to tell us her esophagus is fine. She is not really having true reflux, but is having symptoms due to her stomach not releasing acid the way it should.
If this all turns out to be true, Faith will come back for another procedure where she will bring a big meal of her favorite food. They will add some dye to it. She will eat this huge meal at the hospital and then lie around and watch TV while she digests to see how long that is taking. Sounds like a fun procedure. For Faith that will mean a huge plate of spaghetti from Provino's and a DVD of Phineas and Ferb. :-) This procedure will really give Dr. Saripkin an idea of how well the stomach/pylorus is working.
That is all we know right now.
Mitochondrial disease is vicious. Each time Faith is ill another area of her body seems to stop doing its job. Faith had pneumonia a year and a half ago and shortly after that began to have these GI symptoms. I have to confess it is horrifying to watch your child go through these procedures and have yet another specialist say, "Yes, this is the Mitochondrial disease causing these problems." I'm thankful that my daughter is doing as well as she is with this horrible disease, but I grieve in knowing that another part of her body has now slowed down enough to start causing problems.
Please continue to pray for her and for us. We know the Lord is sitting here with us today. Your prayers and encouragement have shown Him to us all day long.
In Him,
Ann
3 October 2009
Hello friend and family,
We wanted to let you know that Faith will be having a procedure this coming Friday, 10/09. She is having a scope of her bronchial tube. Then she will be swallowing a pill containing a little transmitter that will measure the acid in her stomach for 48 hours. She will wear a little Blackberry-type thing that will be keep up with the data for 48 hours. We are hoping to find out what is causing Faith's heartburn/reflux like symptoms at night. She gets some pretty significant chest pain/lung tightness that Dr. Brown figured out was GI-related about 1.5 years ago. She has been able to control it with Prevacid for since June of 2008, but now the Prevacid is no longer working. We met with Dr. Saripkin at GI for Kids a couple of weeks ago. He wants to find out if this is reflux or EE. In other words, he thinks it will either be her stomach or her esophagus that is having the problem. We are just excited to hopefully get some answers.
We also wanted to let you know that it has been a very sad week for the Mito Atlanta community. We lost another one of our amazing Mito kids this past week. Brody Cole was a seven year old boy with a heart of gold and a big, wonderful personality. He fought long and hard for many years. Please pray for Brody's family as they grieve this unbelievable loss. I went to the visitation for Brody on Thursday. I have to tell you that the experience of seeing another mito child in a casket pounded me in the gut. We just have to find a cure for this disease. My friend, Lisa Higgins, another mito mom, said some profound things on her daughter's blog.
Lisa was at the same hospital with her daughter Ainsley. They were one floor down from Brody and his mom when Brody passed away. She said that while Ainsley wasn't doing well with her GI at the hospital, she would be going home... this time. Then she said,
" That is the underlying horror of this disease - you never know when or how long or why . . . and regardless of how much you can prepare or intellectually know the end result of a progressive disease with no cure, there is no TRUE preparation.
I hate this disease and how it slowly robs Ainsley and all Mito kids of everything... but the worst part is the helplessness - there is no treatment that 'may' work.. there is no drug that 'may' stop the progression - the best we can hope for is that we, as their parents, fight gallantly and advocate ruthlessly for the best quality of life they can have for as long - or as little - as we have them."
I read this on Ainsley's website and thought- this is exactly how I feel. Helpless. How do you fight something that has no way to treat is and no way to stop the progression. It often seems like a long march to the inevitable, but there is no way to prepare yourself for that intellectually or emotionally.
So after this past week, I am more committed than ever to doing what I have to do to get funds into the hands of people who can find a cure for this disease. Right now we are associated with two groups who are working to do that: The UMDF (United Mitochondrial Disease Foundation) and the MDA (Muscular Dystrophy Association). We are participating in the MDA Walk of Hope on 11/7 if you would like to join us for that event or just make a donation go here: https://www.joinmda.org/mdawalkofhope2009/annmccoll
We are also participating in the "All Aboard for a Cure" event for the UMDF on 10/17. If you would like to join us for that event (in Norcross, GA) or make a donation go here: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=290138&supId=272919124
I am putting my head and heart together with my dear friend Stacy (mom of little Megan) to plan an event for 2010 in the Woodstock/Kennesaw/Acworth area. Stacy and I are both two moms who just can't stand by and let this disease take our kids or any other kids! If you have any wonderful, creative fund raising ideas please email me and let me know! We are going to make some big things happen so we can work towards a cure for Mito!
Please keep Faith in your prayers this week. She is feeling very nervous about going under anesthesia. Her last experience with her wrist surgery was terrible. She is very nervous about the whole experience. Please pray for peace for her as Friday approaches.
We love you all and thank you so much for your wonderful support!!
Ann & family
20 September 2009
It's been a while since we updated. Yes, Faith was able to make the telethon. Thanks to Dr. Brown's aggressive treatment of her virus she was 100% better by Labor Day. Faith did an awesome job in her on air interview and I think her MDA film was well received.
This past week Faith had an appointment with a new specialist. We met Dr. Saripkin who is a GI specialist here in Atlanta. We are hoping he can give us some insight into her reflux issues. Dr. Saripkin believes that it is either Reflux or EE (he described this as an asthma of the bronchial tube). Both can be treated, but we need to be sure what we are treating, so we he would like to do a procedure where he will put a camera down her throat and look around to see what is happening in her GI track. She will also swallow a pill with a little transmitter device, and then walk around with a blackberry type device that will measure her acid levels every 5 seconds for 48 hours. Faith will be asleep for the scope. When she heard she was going back to the hospital for yet another procedure she was devastated. My strong girl just cried. In the end, she said that her experience last time was so bad with anesthesia that she simply didn't want to do it any more. I have assure her that we will have a long talk with anesthesia prior to the procedure to see what they did different last time. We had never had that experience before. My guess is that it was a combination of her being under for over 2 hours with both surgeries, and the fact that they gave her pain medication in her IV due to the pain she would have from her wrist surgery. This time the procedure will be very quick and she will be under most likely less than 15 minutes. Faith seemed relieved, but I know this is so hard for her. Can you imagine being 11 years old and having had so many procedures, surgeries, and hospitalizations? You just get tired of it! Please pray for Faith as we prepare for this procedure. We don't have a date for it yet. We are praying that this procedure will give us answers we need. We are also praying it will be a quick and easy procedure for Faith, and specifically that she will not get sick from the anesthesia.
This week is National Mitochondrial Disease Awareness Week. Would you do Faith the honor of telling your friends and family about Mito? Would you tell them about this awesome, brave girl you know that is fighting the good fight against this horrible disease? Would you tell them about her website and tell them to visit and find out more? Would you ask them to make a small donation to her MDA Walk of Hope? Faith has a dream that a cure for Mito will be found in her life time! She (and the whole family) would appreciate the support so much. We realize it is hard for people to give right now and even harder for people to ask others to give, but if every person who knew and love Faith gave $5 to her MDA Walk of Hope we would meet her $5,000 goal for Team Faith4Faith so easily! Please pray for kids with Mito this week!!
You are each a blessing to our family!
Blessings, Ann & Family
5 September 2009
Carue and Faith both had a rough week. Carue came down with a virus Monday afternoon. By Tuesday, Faith had the same thing. Carue felt crummy for a few days, but by Thursday he was getting better and really today you can hardly tell he had anything. Faith on the other hand just wasn't getting better. She had her 3 month appointment scheduled with Dr. Brown yesterday. Her lung numbers were low- not surprising since her fatigue level was so high. Faith has a virus and he is treating it aggressively to try and keep her from getting worse.
Today, Faith already seems better. She isn't coughing at all right now and she has no fever (97.8 when she got up this morning). He said if she has no fever and no coughing on Sunday, then he believes she will be fine to go to the telethon. If we go, we will pop in and pop out. Faith will have to be completely well (except for fatigue which we know will last for awhile) and feeling great for us to go.
The MDA has asked either Chance or I to come and talk in Faith's place if she can't be there, but we are hoping she will be able to make it. One of us or all of us will be on Monday, Labor Day, at 11:40am on the Atlanta telethon. If you haven't seen the MDA film on Faith, pop over to the homepage and click on the MDA video.
We had a nice time on Monday meeting Governor Sonny Perdue with all the Atlanta fire chiefs and other MDA families. It was great to take a tour of the Capitol and see the museum. We even stopped by the Varsity for lunch. The rest of the week was pretty slow, but we think next week will be better. Blessings, Ann
23 August 2009 
A note from Faith: I have spent this year visiting corporations and groups that are helping to raising funds forthe MDA. Now it's my chance to raise funds with the help of my family, friends, and their family and friends. That's you!!
The MDA is a wonderful organization. Every six months I go to MDA clinic. When I'm at the clinic I get to see all my doctors in one visit! This is a big help to me and to my parents. The MDA also helps me pay for equipment I need (like my wheelchair). The MDA sends kids like me to camp for a whole week in the summer, and most importantly the MDA is looking for a cure to Mitochondrial Myopathy (which is what I have) and other neuromuscular diseases.
Please join my team or make a donation (any donation helps!) to my efforts for MDA! I'd love to have you join me at Zoo Atlanta on November 7th.
Thanks for making a difference!
10 August 2009
At last an update! We have had a wonderful summer. I believe it has been the healthiest summer of Faith's life. She had one episode in July where she felt under the weather for two days, but other than that it was the perfect summer. Faith & Carue both participated in Celebrate Summer at our church and had a wonderful time!
Faith attended the Atlanta Writer's Club Youth Writing Camp again this year. She had a wonderful two days and walked away with first place in poetry for her age group! We are so proud of her!
School started back up today for Cobb County, and we joined in the fun by starting our homeschool today. Faith is in 6th grade this year and Carue is in 4th grade. They both had a terrific year last year, and we are hoping for more of the same this year.
We haven't had a lot of MDA events this summer, but they are starting to gear up again. We have a few events that should be coming up this month including the opportunity for Faith to meet the Governor of Georgia! Before we know it, the Labor Day Telethon will be here, and Faith will have her moment in the spotlight. Also right around the corner is the MDA "Walk of Hope". Please keep November 7th (Saturday) open on your calendar. We would love to have you join team Faith4Faith and come out to Zoo Atlanta for this wonderful event.
Check out the home page of Faith's website for a link to a video of Faith's speech. We visited Stromquist & Co. a few weeks ago. My father worked at Stromquist for 45 years. They are a wonderful company and really more like family to me. As soon as they found out that Faith had Mitochondrial Disease they began making donations to the UMDF in Faith's name. Faith wanted to stop by and see everyone to thank them for their support. While she was there, Eric Stromquist offered to tape Faith's speech. This is a speech that she gives for UMDF events as well as for the MDA. She has an opportunity to tell you in her own words about how Mitochondrial Disease effects her life. Many thanks to Eric for filming this and putting it out on YouTube. Please feel free to share it with friends to get the word out on Mito.
Our prayer requests right now are for a healthy school year. Fall can be challenging with all the events starting back up with kids and germs being spread. We are really keeping our eyes and ears open concerning the Swine Flu and possible vaccines. Faith is maintaining so well right now, and we know that is because she has experienced such great health lately. Please pray that she would remain healthy! Also, please pray for Faith as she approaches the telethon date. Right now she is scheduled to be on at 11:40 am on Monday, September 7th. She will be on air here in Atlanta. While we won't get a copy of her on-air interview, we are expecting to get a copy of the film they made of her in June. We'll be sure to share that on the website when we get a copy.
We are in the process of making lots of updates to the website. Thank you for continuing to check on us. Now that we are back to the regular routine of school, it will be easier to give more regular updates.
We continue to thank God for each and everyone of you. Thank you for your prayers and support of our girl and our family!
Many blessings!
20 June 2009
Many things to report since our last update.
First and foremost, Faith had her ENT appointment for her ears. After a
procedure to remove the patch from her ear drum, Faith's hearing in her left
ear was completely restored. The patch was paper thin and shouldn't have
caused problems, but when the patch was removed there was some ointment left
over from the surgery behind the patch. No one knows what caused the
problem, but as soon as the patch was gone and ear drum cleaned (a painful
process that our daughter handled with grace and dignity) her hearing
returned to normal. We are praising the Lord for this wonderful result!
Faith had an appointment with her wonderful pulmonologist Dr. Brown the same
week. While her lung strength (muscles) were stronger, her asthma was
worse. Dr. Brown put her on a new medication, Qvar, which has improved her
breathing. She hasn't had to use a rescue inhaler since she went on this
med! Again, another big praise!
This past week the Andrea from the MDA came over with an MDA intern and
Dave, the camera man. They were here for 2 hours filming Faith for a piece
for the MDA telethon. It was a great day. Everyone made Faith feel very
comfortable. Look for the piece on Labor Day on the Jerry Lewis MDA
telethon here in Atlanta.
Now for some sad news, we found out this morning that the MDA has cancelled
MDA camp nationwide for the rest of the summer. Apparently there have been
several cases of Swine Flu reported at other MDA camps up north. The MDA,
with the CDC's agreement, made the very difficult decision to cancel camp
for the rest of the summer. They couldn't take the risk of exposing
medically fragile children to the Swine Flu. We completely understand and
respect their decision, but as you can imagine there have been many tears
shed in the McColl house today. Faith was leaving for camp one week from
tomorrow. She has looked forward to this for a year and spent the past six
months helping the MDA raise money for camp, equipment and a cure! She has
talked of camp since she visited last year. She understands the decision,
but she is heart broken. We are already praying that their will be a
vaccine by next year! And we are praying for the MDA kids who did get sick
that they will be well soon!!
Here is the article about
the cancellation from the MDA website.
Our girl is a trooper - both in her health and in her disappointment. We are
already thinking of fun things we can do as a family that week. If you have
any ideas, feel free to email us! We are open to all suggestions! :-)
Thank you for checking on our girl! Lots of love and blessings,
Ann
2 June 2009
Faith had a couple of appointments already this week. We went to the MDA clinic on Monday. It was wonderful to see all of our MDA doctors and get good reports. Still no answers about Faith's hearing, but we will see the ENT next week to check on her ears. Everything was great at the clinic visit. I thought I'd take a few pictures this time. I didn't get as many as I like. There are so many doctors coming and going. I did get a shot of the PT checking Faith's legs and the OT checking her arms. There is a picture of Faith with Dr. Janas our wonderful neurologist. These people are all so kind and love my girl so much. Going to MDA clinic is not only productive but fun!
Today Faith had an appointment with her pulmonologist, Dr. Brown. The good news is that Faith's restrictive airway disease (muscle strength) was improved. However, her asthma (reactive airway disease) was worse. So we are adding a new inhaler to her already lengthy asthma regime. Qvar is our new inhaler and we are hoping and praying that will give Faith some relief she needs in breathing. We had all noticed she was asking for her rescue inhaler more often lately. The state of Georgia already had it's first Code Orange air quality alert for the year. Seems early this year!
Our ENT appointment is on 6/11. Please pray for answers with Faith's hearing. It is really bothering her and seems to be getting worse instead of better. We have an MDA event on Sunday. I'm sure Faith will update her blog after the event.
Have you subscribed to Kidzwonder Magazine yet? If not, it is a great online kids magazine. The current June edition just happens to feature Faith and Carue on the cover with an article by Faith on the first page of the magazine! www.kidzwonder.com
Thanks for checking on us. We'll update again after Faith's ENT appointment next week.
17 May 2009
Just a quick update. Faith has been in good health, however, her hearing continues to give her trouble. She feels she is continuing to not hear well in her left ear. We noticed especially last night at the Braves game that she had trouble hearing. Being in a room full of people seemed to make it worse. We were at the Kroger Shamrock Victory party. Faith was doing her best to listen and follow directions as to where to go and when to speak. It was easy to tell she was really struggling to hear.
Chance and I are so anxious for her next ear appointment. Her next follow-up is on June 11th. We will be anxious to talk to the doctor and see the results of that hearing test. Faith has a follow up appointment with the hand surgeon this coming Friday. She will have her big MDA clinic visit on June 1st, and her next pulmonology appointment with Dr. Brown on June 2nd. Lots of appointments! It will be good to get a feel for how she is doing overall.
Please continue to pray for Faith's hearing. As you can imagine, it is very frustrating for her to feel that she is missing out on sounds around her. Check out Faith's MDA blog. She has so much going on right now with the MDA. She is loving every minute of it!!
Thanks for checking in on our girl.
Blessings,
Ann
2 May 2009
Faith had her ENT post-op appointment from her ear surgery. The good news is that her right ear is completely healed. Even the ear tube hole was completely healed. Praise the Lord. The bad news is the left ear. It hasn't healed as well, and Faith is having some significant hearing loss in her left ear. We are going to re-check that ear in a month and see if there has been any additional healing. Please pray for healing and for Faith to regain the hearing she has lost in that ear.
Blessings- Ann
19 April 2009
This is a picture of Faith at the Scottish Rite ER on Tuesday night. It's hard for me to explain how comforting this picture is for me. Not because my daughter is ill and hooked to so many wires (clearly that is not comforting), but because, when I took this picture, I was finally able to take a deep breath and relax for the first time in many hours.
Faith started feeling a little sick on Monday night. By Tuesday morning, she thought she was better. She even dressed to go to Timothy Ministries, but when she arrived, she realized she just didn't have the energy to make it. We went back home. We were able to get some school in that day, but she ran a low grade fever all day. In the afternoon, the cold she was working on turned into the scariest "wheeze" I have ever come out of her. She literally sounded like she was breathing through a cocktail straw. It was late in the afternoon. I put a call into the pulmo, but didn't hear back. I quickly put Faith into her Vest and got a breathing treatment going. Those two things stopped the the external wheezing, but when I listened to her chest with a stethoscope the wheeze was still on the inside. Faith said she was freezing and burning up at the same time. I took her temp and it was still 99.6- low grade. She stretched out on the couch- coughing, wheezing, shivering, burning up. I called the after hours pulmo, and asked for a doctor to call me. It was about 6:30 by then. Faith was shaking so hard that I took her temp again. It was 103.3! This was an hour after I had given her Motrin and 15 minutes from when it was 99.6. At this point her body began the metabolic breakdown. Her muscles gave out, so she could barely hold her weight. Vomiting started. Breathing was labored. No time to wait for the pulmo on call... we put her in the car and I flew to the ER. The whole way there she was heaving into a bowl in her seat. I kept looking for fire stations, so we could stop if her breathing became too labored. She was so sick! We made it to the ER. They took one look at her and rushed her back to a room. Before I could get her out of her wheelchair and into the bed, we had a nurse, respiratory therapist, ER doc, and some other doctor in the room. They were all asking questions. Faith's heart rate was elevated, the oxygen was down, her fever was still sky high, and she could barely respond to anyone. The respiratory therapist got her on oxygen with a breathing treatment. The doctor ordered blood and urine tests, and chest x-rays, since he heard a cracking in her left lung. He ordered IV fluids and anti-nausea meds. She had an IV in her quick!
 The picture you see is a picture of Faith after she has seen all the specialists, had all her tests, has gotten her breathing under control, has stopped vomiting, is working on that fever, and is sleeping in a lightly lit ER room. I was so relieved that I took a picture. At this point, I know she is safe. I know she is in good hands. I know the problems will be solved, and she will improve. It's a good feeling.
All the tests came back normal. She had a virus. This is what a virus does to our girl. This is what a virus can do to a child with Mitochondrial Disease. It can methodically begin the process of shutting down systems. We stayed in the ER for 6 hours. When we left, Faith was breathing normally, properly hydrated, had a temp of 99.4, and was sound asleep! I felt confident taking her home and knowing she would make it through the night.
I apologize for the long story, but so many of you have gotten those emails or phone calls saying- we are on our way to the ER with Faith. I just wanted you to get a feel for what happens and what it is like. Things can change for her so fast. It is frightening to watch, but we rest in knowing the Lord is protecting her. We find ourselves again so very grateful to live so close to such an amazing hospital!
In other news, Faith got her cast off her arm and is now in a splint. She wears a special bandage at night to help with the scarring on her wrist. She wears the splint mainly for protection of her arm. This week she will begin to wear it only when she is in a big crowd of people. She can keep it off at home now! Dr. Lourie said her wrist looks great. We have a follow up with the ear surgeon on May 1st. At that time we will find out if the holes in her ear drums healed. Praying that those little pin holes closed up just as they should!
Faith is still very fatigued. Her body is working hard to recover from this virus. She is still coughing quite a bit. We are faithfully doing breathing and Vest treatments up to three times a day. We are hoping for improvement over the weekend. Faith has two MDA events this coming week. She will be attending an awards ceremony for the Applebee's Golf Tournament at Chateau Elan on Tuesday, and attending the RBC bank celebration for their amazing work on the Shamrock fundraiser on Friday.
 An update on Carue : Carue got glasses last week! He can see so much better now. He also started playing drums. This is something he has been looking forward to for a long time. After 2 years of faithful piano lessons, Chance gave him the okay to start taking drums. Oh my!
We thank you for checking in to Faith's website! We appreciate your love and support so much. I hope as spring and summer arrive, we will be able to do more updates. If you ever have any questions for Faith or for us, feel free to click the little "email us" link at the top of our page. We will do our best to get back to you as quickly as possible. Also, please feel free to leave Faith messages of encouragement. She always loves to hear from friends near and far!
Blessings to you!
30 March 2009
So much has happened since we last updated. We had a wonderful vacation at Disney World with my Dad, Sally, my brother John and my niece. We had such a great time not only enjoying Disney, but really enjoying a wonderful time with family. Disney is the happiest place on earth! Our family enjoyed Hollywood Studios park the best. The shows were wonderful! The American Idol Experience was really fun. In fact, Faith and I attended that show twice. Disney, yet again, showed us their wonderful ability to care for those with special needs. Their respect and care for Faith and our family in all the parks was inspiring. Faith was able to do so much more than she ever had been before in the parks. The weather was in the low 70s with a light breeze. It made a huge difference to be there without the heat and humidity.
 We returned on Monday, March 23rd. Tuesday Faith had pre-op appointments with the hand surgeon and the hospital. We spent Wednesday doing laundry and relaxing before the surgery. Thursday morning Faith was still able to have clear liquids till 10:15am. She had jello, popsicles, and apple juice for breakfast. Chance, Faith, and I arrived at the hospital at 12:15pm. Faith went back to surgery at 2:15pm. She was in surgery much longer than we had anticipated. It turns out the cyst in her wrist was much deeper than originally thought, and it was pressing on an artery. The ear tube removal and patching of ear drums was a quick procedure after the wrist surgery. Faith returned to our room very disoriented and uncomfortable. The combination of drugs for pain and anesthesia made her very sick. She had never been sick post surgery before so this was a big surprise for all of us. She started to feel well enough to go home around 7:45pm. She slept well that night only getting sick once more. On Friday, Faith's pain in her wrist was bad enough to stay on pain pills every 4 hours, but by Saturday she just needed a Tylenol. She is doing amazing well now.
The only issues we have right now are strategically bathing and washing hair while not getting her left arm or her ears wet. It can be done! Faith's initial splint and bandage will be removed 2 weeks from the surgery date. She will get a soft splint at that point. We can remove that one and get her arm wet again! One week later we will go to the ENT to see if her ear drums healed. Two weeks after that Faith will have her soft splint removed.
We had a wonderful two week spring break. It included surgery, but Faith was so ready to have that cyst removed that she actually looked forward to the surgery. We are back to school today. I can see the light at the end of the tunnel for this school year, so we will finish strong! Faith will be graduating from elementary school this year, and Carue will be finishing 3rd grade.
Thank you so much for your prayers and support. It means so much to get your cards and email messages.
Blessings,
Ann
13 March 2009
Thank you everyone for your prayers for Faith. She is better. She used all her energy on Wednesday fighting the bug she had. Yesterday she started to eat a little more, but her appetite will take a little time to return. This morning she woke with the fever completely gone... at last!! Now we just need to get her strength back. Our plans for today and this weekend are to rest and recover. We are supposed to be vacationing soon. Praying that will happen for all of us. And of course we are gearing up for Faith's surgery on 3/26. Please keep all these things on your prayer list: recovery for Faith, relaxing vacation for family, and successful surgery for Faith.
You are all such a blessing!
Ann
11 March 2009
Faith woke up today with a high fever and vomiting. We were able to get the vomiting under control with anti-nausea medication by 10:30am, but Faith spent the day with a 102-103 degree fever. It took a toll on her body. She had trouble walking, wouldn't eat, or drink. We were finally able to get a double dose of motrin/tylenol in her and at 5:00pm the fever started to come down. She has now had a plain bagel, a Fiji water, and her fever is in the 101 range. I think we have avoided an ER run this time. Thank you for those who prayed for Faith today. Just pray that her body can recover. She had a very tiring day of fighting this fever!
Blessings,
Ann
3 March 2009
Faith had another MDA event today at a Kroger Zone meeting. Believe it or not, I think her schedule is going to slow down a little bit because almost everyone has started their Shamrock programs now. Have you found a Shamrock yet?
We have a surgery date: March 26th! It was quite a big ordeal to get these two surgeons together, but it looks like we have done it. The only problem is the surgery has to be scheduled in the afternoon. In the past, Faith has always had surgery in the morning. It is critical for Mito patients not to fast. It can really send their systems crashing. It is important for Faith to have a big breakfast heavy with proteins each morning. We are concerned about her going into surgery in a weakened state. I plan to have a long talk with the pre-op folks at Scottishrite to find out what she will be able to intake prior to the surgery. Please pray for this process. The ear surgeon can't be at the hospital until the afternoon, so it is really our only option. It is important for us to get these ear tubes out as soon as possible and let her ear drums start healing. We also want to get the wrist surgery completed, because her wrist is causing her pain. Please pray for all the pieces to fall into place.
On another note, we had a little snow fall at our home on Sunday. It was actually the "perfect storm" for us! We were able to get up and go to church on Sunday and get home before the snow started. Shortly after we arrived home the snow started to fall. It snowed hard for about three hours. Enough to have some good snow in the yard (see pictures). We even built a little snow man. Then the snow stopped. It started raining. The snow melted and that was the end of the snow in Marietta. My Dad in Decatur got a lot more snow. In fact, most counties to the south and east of us got a LOT more snow. They even had to close schools in those areas. Our school systems were open, so our family had a regular homeschool day on Monday. I'm happy to report our snow man is still in the backyard. He is smaller but still there. And for GA kids, it's exciting to have a snowman in the yard no matter what size he is!!
Thanks for checking in on us. Please keep Faith's surgery date of 3/26 on your prayer list. Also please pray for continued health for Faith as she approaches the surgery date.
21 February 2009
We had a good week. It was busy, but nothing compared to the coming week. We had an MDA event at Hardee's on Wednesday. Be sure to check Faith's update for more information on her experience. Next week, we have MDA events at Kroger corporate on Monday and RBC Bank on Wednesday and Thursday. Faith and I are looking forward to meeting all these wonderful sponsors who are doing so much to raise money for the MDA.
Faith's surgery date of 4/1 had to be cancelled because the surgeon is going to be out of town. We are back at the drawing board trying to get a date and time when both her wrist surgery and ear surgery can take place at the same time. We might be doing it the last week of March now but the reality is that it will most likely be pushed back into April. We just want to get it done soon because the end of the school year will fast be approaching. I will update you as soon as we know when the surgery will take place.
Faith is having some trouble with her distance vision, so my guess is it's time to see Dr. Ho again. She is scheduled for an annual visit in March, but we will try to get in to see him this coming week or maybe the next and see if it's time for some new glasses.
Things are starting to bloom here in GA which means Faith's nose is running like crazy and her asthma is acting up a bit. We have increased her asthma meds as needed and have gotten on our typical seasonal helps. Nose spray etc. So far so good!
Carue is doing great. He is working hard in school. Carue has a very natural gift for photography. I found out this week that he LOVES to be in charge of photography at the MDA events. He took the pictures of Faith at the Hardee's event in her MDA blog section. He loves taking pictures of the cats and various Lego creations. I'm so glad we got him a camera for Christmas.
Chance is working hard on his PhD. He had his first test this week in his statistics class and got an A. We are proud of him. It's hard to go back to school, work a full-time job, be an awesome husband & father, guitarist, and artist! It makes me tired thinking about it. Faith has written another creative critters story that will come out in the March edition of Kidzwonder Magazine ( www.kidzwonder.com). Chance is once again providing the artwork for the story. This collection of creative critters stories is going to make an amazing book one day! So far we have had Tina Turtle, Percy Penguin, and look for Orville Ostrich to make his debute in March!
We will do another update next week to let you know all about the MDA events, and, hopefully, let you know the schedule for Faith's surgery.
Thanks for checking in on us!
Blessings,
Ann
10 February 2009
Today is a gorgeous day in Georgia. It's the kind of day that makes me love, love, love living in the South. It's sunny and 66 degrees outside. You can be outside in a long sleeve shirt and jeans and feel perfect. The best part... no pollen! In about 4 weeks we will be rolling in the thick yellow stuff but for now we can be outside breathing deeply without a care in the world. I love Georgia!!
Today we had the ENT appointment for the kids. Let's start with Carue. You may recall that Chance and I decided it was time to check his hearing. He says "What?" a lot! It got to the point where we were both very concerned. He had an extensive hearing test today at the ENT which revealed that he is practically robotic his hearing is so good. It was way at the top of the chart. Apparently no one has hearing that good. They passed his results around the office so the interns could marvel at the results. Is he bionic? Is he robotic? All I know is that he is nine years old and has perfect hearing. In other words, the officially diagnosis is... selective parental hearing. "Clean your room." "What?" "Finish your dinner." "What?" "Where is your math?" "What?" "Let's pile in the car and go buy Legos." "I'll get my shoes and meet you in the car!" Hummmmmm It's all so clear now!
Now for Faith's ENT appointment. Faith's tubes have been in 3.5 years not 2.5 years as I thought. It's almost unheard to to keep tubes in that long. Top 3%! We are blessed that they have stayed in so long and helped us avoid infections and given her plenty to time to grow. However, it is clear the tubes are NOT coming out on their own. Therefore, they need to be surgically removed before they cause permanent damage to her eardrums. This will need to be done under anesthesia.
Now we begin the surgery dance. Can it happen? Can we find a way to get the ear surgeon, the hand surgeon, and Scottishrite Hospital all line up on the same day?? We would like to avoid two separate surgeries. Surgery for Mitochondrial patients is always a risk, so it would be better to do both at the same time. The problem (according to the ENT) is that most hand surgeons do not want to have an ear, nose, or throat surgery taking place at the same time as a bone surgery. The good news is... we are just taking out the tubes for the ears, and we are removing a cyst (i.e. not getting into a joint) for the wrist. So we begin praying that everyone and everything can line up and we can make this a one day event. Please pray with us!!!
Also, Faith is having a bit of a rough day today. She is feeling very fatigued, having the shakes (without fever) and experiencing dizzy spells. We are praying this isn't the beginning of a myopathy episode or an illness. Faith has a very important date on Thursday with her daddy. Their annual Daddy/Daughter dance is that evening. This is their favorite night of the year. They get very dressed up- complete with flowers. They have dinner and dance the night away. Please pray for her energy to return so they can enjoy their special evening together.
I'll keep everyone posted on the surgeries. Right now we are scheduled for the wrist surgery on 4/1, and we hope to add the ear tube removal to that same date!
Blessings,
Ann
7 February 2009
We have had such an exciting week with all of Faith's MDA activities. She is going to be very busy over the next few months. We have lots of MDA events already on the calendar. The MDA media department will be coming over to do an interview with the whole family. I think that might happen in March. We had a lovely acceptance dinner for Faith and the local ambassadors on Thursday. The folks at the MDA are wonderful. They make us feel loved and like we are part of one big family. They went out of there way to provide a special dinner for all the families. Please see Faith's blog for all the details, pictures, and a video of her acceptance speech.
While it was a very exciting week, the best news came at our appointment with Dr. Brown on Wednesday. Dr. Randall Brown is Faith's pulmonologist. Faith completed her breathing tests, and the reports showed the best numbers she has ever had for lung function. She was 25% better than the last visit three months ago. I really believe that Dr. Brown has her on the best medication for her condition. I also believe his diagnosis and treatment of her "silent" reflux has made a huge difference in her ability to breath well. Her lungs are still compromised and always will be due to her restrictive airway disease (poor muscle strength in her lungs), but her reactive airway disease (asthma) is very much under control at this time. So we are thanking the Lord for her amazingly good health right now.
There are so many things we love about Dr. Brown, but I believe one of my favorite things is his willingness to answer all of Faith's questions. Faith asked Dr. Brown this question: "If my lungs keep getting better, will my asthma just go away one day?" Dr. Brown told her that was a very good question. His answer was this, "Faith, you will always have asthma, but let me give you an analogy. Would you be willing to swim in the Pacific Ocean if there was only one shark in the entire ocean?" Faith said she thought that would be fine. Then he said, "Wonder if that shark was in your bathtub." My literal girl explained that a shark wouldn't fit in our bathtub! Dr. Brown laughed and said, "My job is to keep an eye on that shark and to keep you swimming in the ocean not in the bathtub." So the asthma is there, but we are keeping it away from our girl! The last thing Dr. Brown said to us was, "It is my pleasure to be part of the 'Faith Team'." He is such a wonderful doctor. We do have a team of doctors who help our girl, and we feel blessed to have the best doctors on her team!
On Tuesday, Faith and Carue will be going to see the ENT. We are anxious to get them both checked. Carue hasn't been checked in several years. We are a little concerned about his hearing but I'm sure we will have all our questions answer that day. Faith will have her tubes checked. She has had her current tubes in her ears for two and a half years. Usually tubes only last from 6 months to a year. It is by the grace of God that she has kept them in this long and avoided any more surgery.
Finally, Faith is scheduled to have her wrist surgery on 4/1. We are looking forward to having that behind us.
Thank you as always for your wonderful support, friendship, and prayers. You are a blessing!
1 February 2009
I know we should update more often, but always know that "no news is good news." We have been schooling and trying to stay warm through the cold spells in GA. This weekend was sunnier and nicer. We spent Saturday up at the farm enjoying the 4-wheeler and the horses.
This week is the big week for Faith. We will be attending the dinner where she will be announced as the 2009 MDA Goodwill Ambassador for GA. Faith spent this past week working on her speeches. She met with her public speaking teacher from Timothy Ministries, Miss Little, to practice. I think Faith is feeling great about her opportunities to speak.
We are starting to hear from the various MDA groups around the city. We have three events set up for the last week of February. I know things will start to get busy as we start the kick off for the Shamrock fundraisers.
One of the groups took Faith's speech and turned it into a letter to send to Lowe's (one of the MDA's big sponsors). The MDA put a cute picture of Faith on the letter. I hope it will help as Lowes kicks off their fundraisers.
Homeschool is going well. We are starting to study the World Wars in History. Carue loves studying history and learning all about the big wars!
Okay I don't normally do this but I am going to recommend a website to all of you: www.thepioneerwoman.com. I can't tell you how much I have enjoyed this site. It is the blog off a woman who is living in Nebraska on a cattle ranch. Her husband is the ranch owner and a real cowboy. They homeschool their four kids. She spends her life schooling her kids, loving her husband, taking amazing photographs, writing, and cooking some of the best food I've ever tasted. She has a cooking section and shares all her recipes. She has pictures for every step and easy to follow recipes. She calls it Cowboy food. All I know is that my man, who is not a cowboy- but an aerospace engineer, LOVES it too! I have cooked so many of these recipes and every one has turned out perfectly. Tonight we had her hot wings and quesadillas. You must try her "Favorite Hamburger (right now)." So good... ranch chicken... amazing. Trust me on this one... have something new and wonderful for dinner this week!
Will you pray for our girl this week? Her big speech in on Thursday. We will give you an update and hopefully have some pictures to share with you next weekend.
Blessings to you all!
16 January 2009
What an amazing week we've had! On Monday afternoon, we found out that Faith had been selected to be MDA's 2009 Goodwill Ambassador for the state of Georgia. We were all so excited and proud of our girl. In this role, Faith will have the opportunity to represent the MDA at events, fundraisers and even the telethon. In fact, she had her first speaking event today. She woke up not feeling well but was determined to go to the event. We found out about this event just two days ago. Faith wrote a speech and delivered it today at RBC Bank in downtown Atlanta. She spoke in front of a group of directors and did a terrific job. The room was filled with some of the most delightful people. They were so eager to get on board with the Shamrock program and made a goal to send 30 kids to camp this year.
Since Faith has such an exciting year ahead of her, we have decided to give her a space to write about her adventures. Please see the new page on the site entitled "Faith's MDA Blog". Faith will tell about all her MDA adventures in that spot.
In early February, the MDA is holding a dinner to announce Faith as the new state ambassador, announce local ambassadors, and thank last year's ambassadors. We postponed her wrist surgery until April so that she wouldn't have to make her acceptance speech the day after her surgery.
Faith is having some problems with her asthma and seems to have a pretty bad cold. This freezing cold weather in Atlanta isn't helping much. Please pray for healing for her to recover quickly from this cold.
We are also asking for prayers for the coming year. Please pray for Faith's health and stamina with this amazing opportunity with the MDA. Please pray for her to shine for Jesus in this spotlight He has put placed her. Pray for Carue - as it can be hard to live in big sister's shadow sometimes.
We love and appreciate you all so much! Thank you for reading this website, and for praying for our girl!
Blessings
3 January 2009
Wow- 2009! A new year for learning and living. We had a wonderful New Year celebration at our home. Remember all the people we had to turn away at Christmas due to our stomach bug? Well we got a "do-over" and had them all over for New Year's brunch. It was a delight to have the house full of friends and family! We had about 13 kids running around the house. Let me note that one of the many joys of living in GA is the ability to send the kids outside to play in nice weather on January 1st!! :-) We all had so much fun. I can't think of a better way to bring in the New Year so I think we may make it a family tradition.
We are doing well here. Faith has been strong and healthy post-stomach bug. We got word that Faith's Mito doctor may have left her practice. We are waiting for official word. This is hard to hear because we love her Mito doctor and feel like she is part of the family. There is only one other Mito doctor in Georgia and he really doesn't see patients. He is more on the science side. He's looking for a cure and we sure appreciate that! We know another wonderful Mito doctor that we have met several times at conferences. He practices in Boston. While it is a long way to go, it will be worth it to have a relationship with him in case we need him down the road. For now, Faith really just needs to see the Mito doctor once a year. We have lots of family in Boston so it will be nice to visit family and see the doctor at the same time!
Faith's surgery on her wrist will be February 4th so we've got that on our minds. I know she will be glad to have that behind her and have the pain gone too.
Chance has been on vacation for 2 weeks and still has one more week to go. It is wonderful to see him relaxing and enjoying his well-deserved rest. Next week he and I are celebrating our 15th wedding anniversary. It is pure joy to be married to your best friend for 15 years! I am VERY blessed.
Kidzwonder Magazine's January issue is out. If you did subscribe to Kidzwonder magazine, you may have noticed several offerings from our family this month. Carue has a Lego creation (penguin) on page 23. Faith has a story, Percy Penguin, on page 24 and Chance has a drawing on page 25. There is a foreign money collections article by Faith on pages 68-70 with a great picture of Faith and Chance on page 69. We love this magazine!! If you have kids, (or are just a fan of Faith's writing) you can go to www.kidzwonder.com to subscribe. It's a one time $10 joining fee and then you get the link for free every month. You can't beat that price! (I should have been in sales.)
School is starting up slowly for us next week. We are going to do some awesome experiments in science while Chance is home and use Faith's new Microscope she got for Christmas. We will do a little history and reading too. Easing back into schooling while Chance is still on vacation one more week.
Thanks for checking in on us and keeping us in your prayers!
Happy New Year!!
27 December 2008
Our sweet little girl is now 11 years old. It's hard to imagine.  This precious child that I held in my arms for the first time 11 years ago today is now such a delightful young lady. She and I have such a wonderful time being Mom and daughter. We enjoy spending time together, talking and sharing our love of reading and writing! She is special and don't I know it! :-) I enjoy every moment I have with her. The Lord has given her such intellect, compassion, reflection of heart and mind, and such a desire to share with the world through her pen. We are so proud of her! Happy Birthday sweet precious girl. Every day with you is a joy!!
Merry Christmas to everyone. Sorry we were a bit absent during the holidays. Carue came down with the stomach flu shortly after Faith's b-day party ended on the 20th. We all held our collective breaths to wait and see who might be the next victim of the bug. By the afternoon of the 22nd, it was my turn. I was so sick! Then late that night it was Faith's turn. This bug was vicious. I won't go into details but just know I'm not kidding when I say it was vicious.
People with Mitochondrial Disease are not able to be dehydrated without causing damage to their mitochondria. As soon as it's clear that they are headed toward dehydration, it is imperative to get them to the ER for fluids. My sweet husband packed up our girl and got her to Children's Scottish Rite Hospital. They understand metabolic disorders so well there. They immediately sent her back for fluids. They gave her two bags of fluids and some strong anti-nausea medicine. She was finally able to get some rest and to get her fluid levels back up. They were back home by 8am. I was wishing someone could take me for some fluids but I was on my own to sip Gatorade throughout the day. Faith had a little bit of a relapse on Christmas morning but the doctor at the hospital had sent her home with a prescription for heavy duty anti-nausea meds which Chance had already filled. She took the meds and felt better by noon.
So, Christmas was not what we expected this year. We were supposed to have a large group of family and friends joining us that day for lunch- we had to cancel that on the 23rd. They were all so sweet and accommodating. We missed spending the day with all those folks but we knew we didn't need to share the 'bug' love. So Christmas Eve was a sweet time of Christmas stories, movies and watching the First Baptist Woodstock service on line. (It was wonderful!) Christmas (besides the slight relapse of Faith) was a sweet time of just our little family of four enjoying our Savior's birth together. Not what we had planned - but just what we needed on that day.
We are happy to celebrate these past 11 years with our girl. Can't wait for all that is to come. Thank you for traveling on this journey with us. Your prayers and support are such a support. You bless us all every day!
Merry Christmas dear friends!
Ann & Family 15 December 2008
In our last update there was the thought that Faith might have wrist surgery today, December 15th. The surgery would have taken place at a surgery center and due to Faith's extensive medical issues they preferred that the doctor complete the surgery at Children's of Atlanta at Scottishrite. Faith's surgery is now scheduled for February 4th.
Faith has been experiencing an increase in the dizzy spells she had last year along with some increased fatigue. Would you please pray this to pass? I am calling her neurologist today. It may be time to increase her medication for her migraine variants. She has grown a lot in the past year (height and weight) and it would make sense that we need to increase the meds to accomodate for that growth spurt.
Faith is having a little birthday party with a few friends next Saturday. We are praying she will be well and feel good for her fun day with friends. Faith's actual birthday isn't until 12/27 but the 20th was a better day for getting all her friends together.
Blessings-
Ann
5 December 2008
All the results are in for the battery of tests we had completed on Monday. Faith's EKG and Echo of her heart were normal, all her labs were normal including her CoQ and Canitore levels. She had a chest x-ray today at Dr. Brown and it was clear. Her breathing test showed that the outer branches of her bronchial system are swollen - so there is some tightness, but her volume lung capacity was great. Dr. Brown believes that - based on all the information - she is having a "myopathy episode". Basically this means she is having an episode of unexplained muscle weakness. It would explain the bizarre series of events that have happened over the past couple of weeks with fatigue, heart pounding and panting. He believes this will pass. That she will return to her "normal" ("Faith normal) baseline. Since Mito is a progressive disease, it could mean that she is setting a new "Faith normal". It is really a wait-and-see thing. I am supposed to call Dr. Brown back next week to see how we are doing. One of the things that has been going on is Faith not being able to tolerate her vest at the same level of thumps per second as she was before. So we have loweredthe level so she can get the treatment without having to stop and catch her breath. If she is able to start tolerating the old number again it will be a good indication that this "myopathy episode" has passed. Otherwise we will know we may be at a new place.
Good news: She does not have pneumonia. She isn't sick. She doesn't need an antibiotic or a steroid. She does need some breathing treatments, just to see if it can give a little relief to her tight bronchial branches.
Other news: Faith had her wrist x-rayed today and the hand surgeon saw the film this afternoon. He believes that the bones are growing at different speeds in her hand/wrist but when he looks at the growth plate, he believes this will self-correct. Faith has a ganglion (think tiny hernia) that popped on her wrist when she cracked her growth plate a year ago. It has continued to grow and is causing a lot of the discomfort in her wrist. Dr. Lourie does believe we should remove it. So Faith will have a small surgery on her wrist. It will be a 30 minute procedure. If we are able to do it in the surgery center, we will have it done Monday 12/15. If we have to wait to have it done at the Children's hospital it will be done in February. We are hoping the surgery center will be okay because it would be nice to get it done before the holidays and not h ave any more pain or concern.
We have decided to hold on to our current wheelchair as long as we can. We know we can make it another six months, if not another year. We will assess at that time our ongoing needs.
It was a very active and productive week. It makes me truly appreciate all the wonderful doctors we have in our lives. It is unbelievable to me that we are able to get so many things resolved within one week! What a blessing!!
Thank you for your prayers and we will keep you updated with exact dates on Faith's surgery!
2 December 2008
Hello faithful friends,
I wanted to give you an update from our five hour MDA clinic visit yesterday.
Let me pause a moment to give homage to the wonderful MDA organization yet again! It is amazing to me what this group does for my girl. The wonderful, well-oiled machine was functioning perfectly again yesterday. In five hours we saw: our neurologist, a rehab doctor, the orthopedist, occupational therapist, physical therapist, the wheelchair technician, had x-rays, had lab work, had an EKG and an Echo, met with the camp coordinator/MDA representative and had Faith's wheelchair adjusted. Each person examined or evaluated my daughter. While it must sound overwhelming, let me just say... it is the best use of five hours your could spend.
The hard part is when the evaluations aren't so good.
It was hard to get some of our news yesterday at the MDA clinic. So much to process. The orthopedist is sending us back to the hand surgeon. Faith is continuing to have pain in her left wrist. According to the x-ray she had taken, the doctor believes that her bones are growing at different rates and her hand is starting to turn inward as it grows. Most likely this will require another hand surgery. I put in a call to our wonderful hand surgeon Dr. Gary Lourie who did Faith's carpal tunnel surgery 4 years ago. The Ortho at the clinic believes that her bones in her left hand are growing at different rates and causing pain and pinched sensation. He thinks she needs surgery again. The Ortho also thinks that Faith is on the cusp of needing a brace on her back for her scoliosis. He thinks in about 4 months. I think he gave us 4 months so we can mentally prepare Faith. As one who wore a brace for eight years, I would do just about anything to avoid this for my daughter. Plus she has the added problem of the fatigue it will cause her body to be forced to remain upright in that brace. I remember clearly how uncomfortable that brace was and how hard it was to wear it for 20 hours a day. I didn't have muscle weakness from Mito fighting against me so it brings a tear to this Mama's eye to think about it for my girl. The good news is that Faith's lower curve maintained at 25 degrees during a rapid growth spurt the last six months. So we will see. Let's all pray that she maintains for another four months!!
Faith is almost ready for a new wheelchair. I had four different people come in and tell me how important it is to get her in a power chair next. She psychologically needs as much independence as we can give her at this stage of life. She will be in this chair from 11 to 13 or so. It seems like an easy solution. Get her a power chair. It would be easy if she was in the chair all the time. But she isn't. We only use the chair when she is out and about (i.e. mall, field trips, etc.) Having a power chair will require a lot of change- we would have to remove the chairs from the middle of our van. Build temporary ramps that could be used to get the chair in and out of the car. Getting in an out of the car will be much more time-intensive. It will just be a major adjustment. It's so much to think about. I'd like Faith to have all the independence appropriate for her age. It's hard to get pushed around when you are 11. Whatever we choose is what we need for the next three years. Wish I had a crystal ball and knew if we could make it another three years on the same type of chair we have now. Today it would be fine- maybe even for the next year but at some point she will want to go places without us. It's complicated.
Faith's very out of breath these days so we had heart tests and lab work yesterday. I put in a call to Dr. Brown (pulmo) to try and get her in earlier than our scheduled 1/12 appointmentt. We need to try and figure out what is causing her to become so winded after using so little energy. Thanksgiving day she wore herself out walking up a hill. She was done for the day after that one little walk. It's not normal but then there isn't a lot of "normal" when it comes to Mito!
So, sweet friends and family, will you pray for us? We have some big appointments that will be coming up and some big decisions to make. We rest in knowing that while this information is overwhelming for us as Faith's parents, there are no surprises for our Lord. He knows it all and has a plan! Pray for discernment and patience as we strive to carry out His plan for our girl!
I'll try to update more frequently as we get results from our tests and labs and as we have these additional appointments.
Thank you for your love, support and prayers!
They mean the world to us!!
Blessings-
Ann
P.S. - don't forget to check out Faith's book! (Read more below...) 24 November 2008
Hello friends,
Faith wrote an enchanting Christmas book for her creative writing homeschool class. She had my husband, Chance, include some illustrations and together they made a wonderful book. Faith passed the book along to her editor at Kidzwonder magazine. Mrs. Lily enjoyed the book enough to help us get it into an e-book format. Mrs. Lily is now selling Faith's book on her website for $1.00!
Now I know that she is my daughter and I'm crazy about everything she does, but I have to tell you that this story was so sweet it brought tears to my eyes. If you would like an enchanting little book to share with your kids, read on your own, or if you would just like to support a budding author, please visit http://www.hshighlights.com. The picture for the book on the website is a "Faith" original and is in the book along with Chance's art. You can even click and see a sample of the book. I think you will love it!!
If you purchase the e-book and are interested, we will scan and send you via email an autographed title page signed by the author and the illustrator. (I know them both very well! :-)!) Just send me an email if you are interested in the autograph! Of course if you live locally, we'll have them sign it in person!
I wanted to thank Mrs. Lily for her support of Faith and her writing. Mrs. Lilly is giving 100% of the profit on the book to Faith. Faith and our family are sponsoring a child through Compassion for Christ and Faith is looking forward to using those funds to help our newly sponsored friend in the Dominican Republic, Karen.
Would you please do me another favor? If you get the book and enjoy it, would you please share this information with your email friends and web blog friends? (Maybe even mention it on your website?) My goal is to encourage Faith in her writing pursuits. I'd love to see her have a great response to this first official book that is being offered for sale.
Hope you enjoy it as much as we did!!
Merry Christmas, Love and Blessings,
- Ann
17 November 2008
It is COLD here in Georgia. I mean really cold- in the 20s with windchill. We love the cold as long as we are inside, with the fireplace on and a kitten in our lap! Luckily that is where we have been lately. Faith caught a pretty bad cold last week. We are thankful she was still on an antibiotic from an inner ear infection the week before. The cold went straight to her chest so we increased her Vest and started breathing treatments. She never ran more than a low grade fever but the cold in her chest took all her energy. With Chance in Germany, it was a good week to stay cozy and in Jammies!! Faith is feeling much better now and we have hopes that we may have a healthy Thanksgiving holiday this year.
We have our MDA clinic coming up on 12/1. I'm anxious for Faith to see the orthopedist. I want to see how her scoliosis is doing. She is also continuing to have issues with her wrist where she broke her growth plate last year. It seems to be looking more likely that she may need surgery where she has a "hernia" poking out in her wrist. It is painful and time is not resolving the issue.
Please continue to pray for our girl. Pray for her to have continued good health through the holiday and her birthday.
Blessings,
Ann
2 November 2008
 Hello friends, Thanks for checking in on Faith. I can't believe it's been almost a month since we last updated. Faith has had a wonderful healthy month. She has participated in lots of activities. We have gone apple picking, pumpkin picking and enjoyed the leaves changing. Faith participated in an MDA Executive Lock-up event and had a wonderful time meeting people who were raising funds to help her and other kids supported by the MDA.
We received a letter in the mail asking if Faith would consider applying for the local and state MDA Goodwill Ambassador position. Faith was excited to apply so we have just turned in the application. If she did get one of these positions, she would represent the local MDA or state MDA by attending fund raising events and getting the word out about all the MDA has done to support her and others. Those of you who know Faith know this would be such a great opportunity for her. She loves the MDA folks and loves talking with new people. We will let you know if this happens for Faith.
In a few days the November addition of Kidzwonder magazine will be coming out. When it does, I will be putting a link to it on this site. The editor has graciously allowed us to give out a free copy of this magazine for the month of November. The November edition will have a poem by Faith, a short story and an article on Mitochondrial disease. We are so proud of Faith and all her writing accomplishments!
Our only medical update is that Faith has been experiencing dizzy spells again the past two days. They are very similar to the ones she had in October last year that lasted through Christmas. I will be putting in a call to her Neurologist tomorrow just to touch base and see if there is something we need to do to nip this in the bud. As you can imagine, dizzy spells are rather miserable. We will see if we need a change in medication to fix this problem.
We thank each of you for checking on our girl. We appreciate the prayers and blessings you send our way! Check back soon for the Kidzwonder November link!!
Ann & family
8 October 2008
Hello all,
We are so blessed- Faith is in one of the healthiest times that we can remember. Once we got her on Prevacid for her apparent reflux all the breathing troubles seemed to vanish. We met today with Dr. Randall Brown, Pulmonologist, and Faith's numbers were fantastic!
We have had so many wonderful events lately. The week of September 23rd was Mitochondrial Awareness week in the state of Georgia. Our family worked to pass on Faith's website to as many as possible.  We want people to know about this disease. As it becomes a more familiar term, we hope that more and more people will help us search for a cure. Mito Awareness week ended with a wonderful Music for Megan concert. We were blessed to have four families of our dearest friends drive out to Alpharetta for a evening of fun and music. It means so much to be supported. The concert was a huge success especially when you realize the state of Georgia was in a gas crisis at the time and no gas was available. We appreciate our friends using the little gas they had to get out to Alpharetta.
This past Saturday, we attended the MDA Walk of Hope at Zoo Atlanta. So many of you supported us with fundraising. Thank you!! Team Faith4Faith did great for our first time attending. We had 29 walkers and raised $5,220! At the Walk, there were 600 walkers and over $145,000 was raised. The whole day was wonderful. Such a celebration of life and love!
THE BIGGEST NEWS- I have saved for last. Our darling girl as you know has a passion and God-given talent for writing. If you don't find her with her nose in a book, you will find her with a pen in her hand or her fingers typing on a keyboard. Faith submitted some stories to a online homeschool magazine called KidzWonder. (www.kidzwonder.com) Not only were her articles accepted but she was asked to be a monthly contributor to the magazine. Her first article and poem came out in the October issue! What a joy to see her words in print. Faith is being compensated for her writing . She was stunned that she would receive pay for what she loved. The editor of the magazine asked Faith if she would like to help her write unit study reviews for books. Faith is helping with the unit studies in addition to the monthly magazine articles. With all this work, she has opened a savings account and is watching it grow. Smart girl!
We are so happy for Faith and her writing. I have been give permission to share the link to the magazine with all of you for the month of November. (The only cost for the magazine is a one time $10 fee to be put on their email list to receive the link. So if you can't wait until November - or want to see her future - please feel free do the one time subscription fee.) We decided to wait to share the magazine until November because Faith has an amazing poem, fiction story and an article on Mitochondrial disease coming out that month. We are so proud of her!!
Thank you as always for your love, prayers and support. We are so thankful to the Lord for this wonderful time of health for Faith!
19 September 2008
Hello friends and family,
Can you believe the Walk of Hope is just 2 weeks from tomorrow? We are so excited and hope many of you will come to Zoo Atlanta that day to support our girl! The MDA has been such a blessing to our family and we would love to bless them back by having our team raise $5,000. I know I set a really big number but we are already have $1,525! I know we can do it!! I have seen or spoken to several of you during the week and the response has been- "Oh I want to make a donation. Will you send me an email and remind me?" :-) This is your reminder!! Please consider donating to this worthy cause. Your donation is tax deductible! Any amount will make a huge difference in the life of these kids!
I wanted to just tell you a little bit about our day today. As you know we homeschool in the McColl family. We have many reasons for homeschooling but one of them obviously is that Faith simply couldn't make it through long hours day after day. Plus her disease causes her to have many days where she simply doesn't have the strength to get out of bed. Today was NOT one of those days. In fact, we had 'field trip day' today. We doubled up school work yesterday and hit the trail today. We have been studying the westward movement and all the folks who moved west for the gold in California. We decided it was time to do some mining of our own. The kids and I went to North Georgia and stopped at Duke's Creek gem mining. It was so fun! I wouldn't believe all the incredible gems we found. Lots of different things- no gold sadly! Afterwards we went to my step mom's family farm only a few miles away and ate our picnic lunch (along with a bag of boiled peanuts and some apples we got from a roadside stand). We went by Old Sautee's store and bought Carue a kite and Faith a harmonica. The afternoon was spent at the farm with Carue flying his kite and Faith learning the harmonica. At 4pm we packed up and headed up the road to the North Georgia Corn Maze. This is such a rite of passage for kids and we had never done it. I was determined for Faith to have this experience but I knew she couldn't walk through that huge maze. So with Carue leading the way and me pushing Faith in her chair- we had the best time in the world getting hopelessly lost in that Corn Maze. I'm happy to report that we were able to use our skills from reading Moccasin Trail to track Faith's wheelchair tracks and realize when we were going in circles. It was hard work on this Mama to push her almost 11 year old girl up hills and through rivets- but this Mama will do anything for her girl to feel like a regular kid. Today that meant making it through a corn maze. Corn mazes are fun and should be experienced! Next time, however, I'm bringing my man along!!
We are home now- exhausted but happy. Thankful for the privilege to homeschool. Thankful for the doctors and the MDA staff who work so hard to make Faith feel as well as she does. Today was a great day! We are thankful for that. There will be days that aren't like this and on those days we are grateful for organizations like the MDA who are working to find a cure for our girl!!!
Please consider making a donation to this wonderful group. If you have already donated please know that we are so grateful. I wanted to send this email to everyone so you could hear about our wonderful, wonderful day in the mountains.
PS: Hubby has a Walk of Hope button on the front page of this website. There is a 'donate link' right under it or just click below:
To join the team, click here.
To donate (via my participant page), click here.
Much love and many blessings- Ann
1 September 2008
When last we wrote, Faith was getting ready to attend an MDA fundraising event. The evening before, Faith came down with a bad virus. Her temperature rose and her lungs sufferered the brunt of it. She was so disappointed when she had to miss the MDA event and the opportunity to support that wonderful organization. The virus took it's toll on her for a couple of days. We had her tested for Strep which was negative. By Saturday afternoon, she was feeling well enough for us to head out for our vacation. We drove to Pawleys Island, SC and enjoyed a week at the beach with my dad and stepmom. The weather was fantastic- not too hot. We were there the week after the busy season and couldn't believe the difference in crowds on the beach and restaurants. It really was a relaxing week.
We found out Carue is a boogie-boarding expert. He was hitting the waves with gusto. The waves were big from tropical storm Faye off in the ocean. He had such an awesome time spending hours daily in the water. Faith had a great time as well though she tends to prefer time on the beach. We have a big canopy tent we can put over all of us and Faith is able to build her sand castles in the shade. The wonderful salt air really cleared us all out but in the end it loosened things up too much for Faith. She was really having trouble clearing mucus in her lungs. Luckily we had the vest and her breathing treatments. We all did a lot reading, relaxing and eating of seafood! It was the perfect vacation.
We are back home. School is starting up again. It feels good to be getting back into the routine. Carue loved the fact that everyone he knew was schooling the week he was hitting the beach. Carue quote, "Let me get this straight. Everyone back home is starting their school work... and I'm headed to the beach!" Doesn't take much to make that boy happy! His birthday is this week- my little fella will be nine. Please check out the Pawley's Island link to see some pictures of our wonderful time at the beach.
Just a reminder, the MDA telethon is this weekend. If you have a chance to watch for a little bit, you can learn so much about the services the MDA offers. I have watched the telethon since I was a little girl. Now I watch it through the eyes of a mother whose child has benefited from those wonderful services. The stories will break your heart but will also give you such hope! I will be contacting you all soon about the Walk of Hope that will take place at Zoo Atlanta on 10/4. If you are local, hold the date on your calendar and perhaps you can join us at the zoo that day to support Faith and the MDA. More info to come soon!
Blessings friends, Ann
20 August 2008
It has been a while since we last updated. It's been a very busy time but also a great time for Faith's health. So far this has been the best month of the summer for her healthwise. Homeschool started back up last week on 8/11. Check out the homeschool page to see what we have going on this school year.
The week before our school started Faith attended the Atlanta Writer's Youth Workshop. This was two days at a local college working with writers and local authors to learn all about the business of writing as well as getting tips for improving her own writing. The organizers of the event told me that Faith was so interested, attentive and asked the best questions. There was an actual writing contest the 2nd day of the workshop. The kids wrote a story or poem during the night between the two classes and turned them in. Faith was thrilled to win 2nd prize for a fiction story she wrote. Faith is 10 and the kids at the workshop were 11 to 16. She didn't expect to win an award. She was so surprised and excited when she won. She won a necklace that says "Dream" on it. She was thrilled!! Faith dreams of being an author of children's books one day. She left that workshop feeling more knowledgable, empowered and confident to reach her dream. We sent her story to Stone Soup- a magazine for young writers. We'll let you know if it gets accepted.
Today the kids had an  amazing day of homeschool. My Dad and I were interviewed by WSB Channel 2 news reporter Jovita Moore. The are doing a piece on Enota/Camp Pioneer for their show "Hidden Treasures of Georgia." Enota is a campsite in Hiawassee, Georgia. It was YMCA Camp Pioneer before it was Enota. My Grandfather was the first camp director of Camp Pioneer in the early 40s. Dad went to camp there as a young boy, our family went together to family camp in the 60s and my brother and I both attended in the 70s. They wanted to interview us to hear our memories of what is was like back then. A camera woman came and set up all the lights and equipment. She let the kids ask lots of questions and look at all the equipment. Jovita Moore was so kind and very sweet to the kids too. She did a great job of explaining her job and how the piece would be put together. It was an amazing experience for a couple of inquisitive homeschool kids!! They also shot some film of the kids and I homeschooling. Look for the piece on 9/9 at 8pm on WSB Channel 2.
Tomorrow will be a big day for our family. Faith has been invited to an MDA (Muscular Dystrophy Association) fundraiser event. They are having an executive lock-up at Park Tavern restaurant at Piedmont Park in Atlanta. They will take key leaders of the community and "arrest" them, pick them up in the paddy wagon, handcuff them, take their picture behind bars and then let them call friends and associates to meet "bail". The bail of course is donations that will support the MDA. These donations will go to the camp, clinics and research that are so important to all those with diseases that the MDA supports. Faith has been invited as a special guest to represent the MDA kids who benefit from all these wonderful services. We are thrilled that Faith is having opportunities to meet community leaders and have a chance to share how blessed she is by all the MDA does for her.
Homeschooling is so amazing. Not only are my kids blessed to be learning with such wonderful Godly curriculum (see the lists in the homeschool section) but they also have days like today and tomorrow where their education is real world experiences that can shape their lives. We all feel so blessed.
Faith's breathing and chest tightness have gone away. She had one night a few weeks ago where she had the same pain but it was just one night. We feel confident that we have solved that problem. Faith will return to the pulmonologist in October. We'll be anxious to see how her numbers look on the breathing tests. I am confident they will be much improved.
Thank you for continuing to check on our family and our girl. Your love and support mean the world to us. We are blessed!!
29 July 2008
Let me start by saying that Faith has had a wonderful week. It's hard to know what made her turn the corner. We started a GERD medication, the virus may have passed, the increase in asthma meds may have made the difference. I'm not sure. All I know is that she hasn't had chest pain in over six days and hasn't used her rescue inhaler once in the last 72 hours. (Keep in mind that she has been using it multiple times a day since mid-May!) If I had to guess, I would guess it's the GERD medicine. Why she is having GERD is a question for another day. For now she is feeling great and we'll take that!!
The real reason for my update is to try and articulate the joy of today. Faith and I were invited out to the MDA Summer Camp in Rutledge, GA. We came for the day as visitors so we could check out the fun and decide if she might want to go to camp next year. The MDA camp is a sleepaway camp for kids affected by a disease covered by the MDA. The campers go on Sunday and their parents pick them up on Friday. The kids are of different levels of disability. I saw a few kids that didn't have a wheelchair at all. There were lots of kids like Faith who needed a chair to get from place to place and then were fine out of their chair at the destination. Then there were lots of kids who were wheelchair bound all the time.
I don't think I can put into words what I experienced today. First of all, it is a very, very nice camp. www.camptwinlakes.org Check out all that is there. This camp was designed as a camp for kids with various special needs. Everything is handicapped accessible. If you want to do something, you can do it. Horseback, paddle boats, mini golf, archery, crafts, ceramics, the camp has its own radio station that the kids can run, a pool, creative arts center for plays, library, etc. Everything is air conditioned. Trust me - Rutledge, Georgia in July - you need air conditioning.
This day will remain with me forever. My daughter smiled and laughed in a way that I hadn't  seen in years. Everywhere she went all the campers and counselors were so welcoming. She was included in all activities. There was this one moment where a bunch of guys were having a bongo drum lesson. They asked Faith to join in. At first she said "no" but they encouraged her and rolled her chair over, gave her a big drum and asked her to start the beat. Her eyes were as wide as saucers as she started pounding on the drum. She had the time of her life.
As I've thought about this day, it occurred to me that this was the first day in Faith's life where she felt she belonged. Everyone was just like her. No one pitied her or looked at her with those questioning eyes you get when she is out in her chair. Everyone was in a chair! No one felt sorry for her. Nothing was inaccessible. There wasn't one activity there that she was prevented from doing. It was all there for her to enjoy and participate in. Faith felt so welcomed and encouraged... so capable. Can you imagine that feeling for her? I now understand why these kids say this is their favorite week of the year. They were all having a ball. We were able to have lunch in the dining hall. The food was great! The best part was the counselors getting up and doing cheers or starting the wave. A bunch of Kroger employees had come to the camp with tons of ice cream and the fixings. In order to thank the employees of Kroger, the kids did their favorite song and dance called 'Ice Cream and Cake'. It was this hilarious song with motions  and lots of dancing. Everyone danced in a chair or on their feet. Ken Cook, our precious weather man on Fox 5 in Atlanta, was there and he was dancing like crazy!!
The MDA pays for all of this. The campers don't pay a cent. The counselors are all volunteers. There is one counselor for every camper!! One on one!!! There were 140 campers there this year. That means 140 people volunteered their time for that week so those kids could have the time of their life. It costs the MDA $800 per kid for camp. Think of all the kids across the country having this experience for this week out of the summer. The MDA fundraisers pay for that along with paying for outstanding research in the field. One of Faith's neurologists was at the camp for the week along with three nurses. These kids are so well cared for that the parents can leave their medically fragile children and know they are safe and having the time of their life.
I am in tears as I type this. Tears because I saw the hand of God all over this camp. People just loving these kids out of the goodness of their hearts. Tears because I saw a look of joy on my daughter's face that I'm not sure I've ever seen before. (It was the look of belonging in a world where you frequently don't.) Tears because I'm afraid I don't have adequate words to express what I saw today.... Grown, strong men who give their week to be a one-on-one counselor to these almost grown men campers who need to be lifted day and night to be cared for... a teenage male counselor holding the hand of his camper and beating the drum because the camper didn't have the strength to do it himself. The smile of joy on that camper's face. A camper being held on a horse by three people to keep her upright- her face- JOY! There were no tears at the MDA camp. There was just laughter, smiles and pure joy. I've never seen anything like it in my life.
And you can bet your bottom dollar that next year, Faith will be there on Sunday getting dropped off for her first day of sleep away camp. And when we pick her up on Friday  , I know the look that will be on her face. It melts this Mama's heart. To the MDA- to Miss Peggy, Miss Betsy, Miss Tammie and all the others that made Faith's day so perfect, thank you just doesn't seem enough. What a blessing! 16 July 2008 (Part II)
As I write this, I can't believe that we are back home. It's hard to explain the joy of being in your home when you were convinced you'd be sleeping on a cot at the hospital keeping watch over your child all night. My girl is better AND we have some answers.
Let me begin this tale by saying that we have always had such a wonderful experience at Children's of Atlanta Scottish Rite. However after 10 plus years of amazing service, we had a horrible ER doctor today. I won't dwell too much on the negative. I'll just say this doctor wanted to send her home because her oxygen numbers were good and she "looked good" to him. When I explained I wasn't comfortable with his decision he offered to also send us home with some pain meds so Faith could relax at night when she went to sleep. Let me just say what a disaster this would have been. I kept telling everyone that Dr. Brown (our amazing pulmonologist) was in the hospital and expecting us and no one would contact him because the ER doctor said she was fine. Mama Bear came out and I said it was unacceptable to send my daughter home in the same condition she came in. He suggested we return in 24 hours if she didn't improve.
I called my husband on the cell and he reminded me that I had Dr. Brown's cell phone number written on a business card in my wallet. (Dr. Brown had called us at home a couple of months ago and I jotted down his cell phone off caller ID in case there was ever an emergency.) I called his cell phone and he answered. I explained what was going on and he was furious with the ER doctor. Let me just say that Dr. Brown is the kindest, gentlest man but he was furious that this doctor had not called him. Dr. Brown called the doctor and told him he was in the hospital and waiting for Faith to arrive and he should have called him immediately. Dr. Brown started giving out the orders for the other doctor to follow. He had Faith do a nebulizer breathing treatment with a different medication than normal. He ordered an x-ray and blood work.
In the end, the breathing treatment helped tremendously. The x-ray was clear. The blood work, however, showed that Faith is fighting a virus. The virus was having an ill effect on her myopathy (muscle weakness from the Mito) and causing her diaphram to not work as well as it should. She needed a stimulant (NOT PAIN MEDS!) to boost her energy and allow her muscles to work a little better. The new asthma med in the neb did that and she felt so much better.
So now we know that Faith has a virus. It has caused muscle weakness and fatigue- especially in her lungs and diaphram. We know that the new meds are make a big difference and we know that the virus will run its course and then we pray all this tightness will be gone for good.
I know that the Lord is good. He made sure that Dr. Brown would be working in Scottish Rite on the exact day we needed him to be there. God also orchestrated Dr. Brown calling me at home to change an appointment time two months ago so I would have his cell phone in my wallet when I had a real emergency!! God is good all the time. I personally am praying for this doctor in the ER because if I don't my anger will turn to bitterness. I am praying that he will allow good judgement to overcome his ego and allow him to make better choices for other patients. It scares me to think what would have happened if I had been a less expereinced mother who assumed the doctor knew best. But no need for fear- God put all the pieces in place.
Please pray for good rest for Faith again tonight. I think it helps both her and I to know there is a reason for the tightness and there is good reason to believe that the tightness will go away when the virus has passed. There is a lot of comfort in knowledge. I really believe this change in medication will get us through the next few days. We have a plan and that is a good feeling.
Your prayers have carried us through these past few days. I can't thank you enough!
In Him,
Ann
PS: I confessed to Dr. Brown that I had written down his cell phone number after he had called my home. I told him I had planned to only use it in an emergency and this had felt like an emergency to me. He said,"This was an emergency. I'm so glad you had my number- you hang on to it!" I can't tell you what a blessing Dr. Brown is in our lives. He is a good man and an amazing doctor.
16 July 2008 (Part I)
Hello friends,
I wanted to let you know that Faith has had a good night. She went to bed and had one episode of chest tightness. I was so proud of her. as she got up very calmly and said her chest was tight and she'd like to do a rescue puff. She took her puff and said, "Do you think we'll have to go to the hospital?" I told her it would be very clear if we needed to go to the hospital. We prayed and decided we would just not worry. She went back to bed and that was that. She is still sleeping right now (8:10am) so she has had a marvelous night of sleep.
I feel surrounded by joy and gratitude. I am taking a wonderful bible study at such this summer on Philippians called EnJoying Life. It has been such a wonderful encouragement. Also, my dear friend Ann V. has a marvelous blog at www.aholyexperience.com . Ann keeps a Gratitude Journal and encourages others to do so as well. Let me encourage you to start one too. It is powerful to record the things you are grateful for in life. I think it's a wonderful legacy to our family to know the things we are/were grateful for in life. If you go to Ann V.'s blog you will see lists of things that make you smile and bring tears to your eyes. Life is full beyond measure with things to thank God for- here is my list today:
- Specialists who will see you on a day you don't even have an appointment.
- Doctors who know and love us. Know us so well they remember all the details without even looking in the folder.
- My daughter's wheelchair- while people see wheelchairs as limiting, this chair has given my daughter such freedom to get out and do things we couldn't before. It allows her to conserve her energy and use it where where needed or wanted.
- My daughter's wheelchair forces me to slow down. As I watched people in the parking lot frantically pulling kids from their cars and running in for late appointments, I thanked God for the wheelchair that forces me to slow down. I have to get it from the back of the car, set it up and help Faith get in it. We are able to chat, relax and roll into the doctor's office. Slowing down allows time for mental gratitude in all circumstances.
- The many specialists who made a choice in their career to love and help children. For the choice they made to live and work in Atlanta so they would be available to my daughter when the time came.
- For my amazingly strong in spirit daughter, who faces each challenge with the attitude of David as he faced the giant!
- For my husband's love of the Lord and our family. For his amazing sense of humor that he passed on to my children. For my daughter's belly laugh when she gets really tickled about something- and for her ability to see humor and laugh even when she isn't feeling well..
- For precious friends who will do anything for us and will take my son (or offer to) at a moment's notice.
- For being equipped and allowed by God to raise a daughter whose health issues can baffle the best of doctors and whose spirit and love of Jesus touch everyone she meets.
- I am humbly grateful almost beyond words for the friends and family who commit to pray for our daughter. The power of prayer in her life is so real and strong that it brings tears to my eyes.
We love and appreciate all of you so much. Please continue to pray for our girl that we will find a solution to her nighttime breathing issues. We are in the process of setting up a sleep study for her at the hospital and we hope that might give us more information.
Blessings and love,
Ann
15 July 2008 (Part II)
Hi friends,
It's 6:30 and we are back home. Faith saw one of Dr. Brown's techs today. Here is the good news: Faith's lung function has improved from her last visit and the x-rays showed that she doesn't have pneumonia. These are both huge praises. The problem is that no one knows what is causing the problem Faith had last night. After the tech saw Faith, she decided that she should be admitted into Scottish Rite for observation and a sleep study. Dr. Brown (who was on hospital duty today) had asked her to call him as soon as she saw Faith. She put in a call to him and he agreed with her decision. They talked on the phone for about 15 minutes (in the room with us). As they talked through her symptoms, they came to the decision that it might be a GERD issue or in Faith's case a silent reflux issue since it was just one random night and there were no other symptoms. Faith and I sat there on the edge of our seats. Faith was actually in my lap and she had her arms around my neck. She was squeezing the life out of me while they were saying she would be in the hospital and when they started to change their mind she lossened her grip. Faith did NOT want to go to the hospital. She is so tired and knew that the hospital would mean no rest after having a bad night of rest last night. She was so happy when they changed their mind!
We are praying tonight will be better. They have given her some medication for GERD to see if it helps. However, if we have a repeat of last night we have instructions to call into the on call doctor and most likely head to the ER. Perhaps observation would have been a good thing but it's hard to take a child who looks so well to the hospital. During the day Faith looks GREAT (just tired) but last night was terrible. Again, we are praying for restful sleep tonight. I'm not convinced her issues are GERD related but as with most Mito kids we are really working in the dark. The truth is these symptoms may be a progression of her disease. Chance and I are talking about getting Faith a bed that can incline so that she can adjust her body better on nights that are tough. We still feel like we have options.
I'm working on very little sleep right now and I know I'm rambling. I hope all of this makes sense. Remember- the bottom line is: No pneumonia, improved lung function and possible GERD as the answer to the issue. While digestive issues are not a road we want to go down, they are very common and not unexpected in mito kids. If it's a simple as taking a pill to stop the GERD, we will gladly take that solution.
Thank you for the emails and phone calls today. Your encouragement helped get us through the day.
Blessings,
Ann
15 July 2008 (Part I)
Faith had a rough night with breathing last night. Her lungs were very tight and she felt like she couldn't get a deep enough breath. She was up till midnight trying different meds- we called the pulmo to get some suggestions of things to try. This is the same type of night she had a month and a half ago when she had pneumonia. She isn't coughing. She has no wheezing. The tightness was gone this morning but she is very tired.
We were able to get an appointment for 3pm today. I am assuming she'll have an x-rayand breathing function test to see where we are at. The on call doctor last night suggested that she might need a bi-pap machine to assist her in breathing at night. We will discuss that as well. Dr. Brown is out of the office today- he may be on vacation. So we are seeing a doctor that doesn't know Faith. Please pray for wisdom for both the doctor and myself. Please pray for healing for Faith's lungs. We haven't really been able to get her back to good numbers for her lungs since her last espisode of pneumonia. I'm praying can find a solution for her.
Thank you for your prayers!
Blessings, Ann
Also, a praise: Faith's neck pain is better! Thanks for your prayers!
7 July 2008
Hope everyone had a wonderful 4th of July. We had a wonderful celebration with friends. What a joy to celebrate the wonderful freedoms of our country. We haven't updated in a while so let's catch you up. On Friday, June 27 Faith went to see Dr. Brown. She was very fatigued and needed her wheelchair that day. She went in to do the breathing test and the technician and I were both very concerned when the test showed Faith's volume lung capacity down to 39%. The technician gave her a breathing treatment right away and the number went up to 55%. Much improved but still a concern. Dr. Brown checked Faith and realized that her body was fighting off something. She was so tired. The poor numbers represented not only an asthma problem but also poor muscle function (i.e. Reactive and Restrictive Airway Disease) Dr. Brown raised all her medications and put her on an extra inhaler.
By that afternoon Faith was running a fever and over the weekend it continued to go up. We had her checked for Strep which was negative. The clinic thought she might have a sinus infection so they put her on an antibiotic. Her asthma really acted up all week. She coughed a lot and basically felt very crummy. By Thursday she seemed on the mend and on Friday was able to celebrate the 4th with friends.
Faith and Carue are both participating in Celebrate Summer this week. It is a VBS/Day Camp that our church is having. It lasts from 9:30 to 3:00 each day. These are long hours for Faith. Would you please pray for her stamina this week? She is so excited about all she will be doing this week.
Faith is having a very hard time with muscle tightness and tension especially in her neck right now. She is having some very hard spasms which is causing great discomfort. Chance and I are praying very strongly for this pain to be lifted from Faith. Will you pray with us on that as well? We have some friends who have recommended a D.O. in Suwanee who specializes in pain. We are hoping to get Faith in to see him soon.
Our next appointment with Dr. Brown is the end of this month. We are praying that the numbers will have improved. Just a reminder. Faith is getting plenty of oxygen. The Volume Lung Capacity number indicates the difficulty she has in drawing a deep breath. On this last test she was having trouble breathing in and breathing out. However, her oxygen levels are good. This just means that her already tired body is having to work very hard to breathe. Hope that makes sense.
Thanks for praying for our girl.
Blessings-
13 June 2008
Faith is doing so much better. All the fatigue is gone. 72 hours after going on the antibiotic she was a NEW person- just as Dr. Brown said she should/would be! We continued to rest throughout the week and by last weekend we were ready for a little mini-vacation. We drove 40 minutes to Stone Mountain Park on Sunday and spent the day and evening. We went to the laser show on Sunday night. The kids LOVED it! Monday morning we were the first folks on the top of the mountain. (We rode the sky ride to the top.) Faith was in her chair most of the trip and she and I tried our best to do indoor/air conditioned activities. Hubby had points, so the hotel was free! It felt like we got away. It was a blessing to have some family time to make up for missing our family trip to Boston/Mystic.
Thanks for your prayers for our sweet girl. She is doing great! We do have a follow-up with Dr. Brown next week.
4 June 2008
During the past week, Faith has continued to feel very fatigued. She would have timeframes of having energy and then she would come crashing down. Dr. Brown put Faith on Orapred Friday after the increase of Symbicort only made her jittery but didn't help with her chest tightness. The Orapred helped with the tightness but made Faith even more tired and gave her terrible, pounding headaches.
The Lord made it very clear through a series of events that the trip to Boston just wasn't what needed to happen. So hubby and I made that hard decision. The trip was our annual family reunion for my family. We have been getting together every year for 10 years and it broke our hearts to not get together with my brother's family, aunts, uncles, and cousins.
On Monday, Faith had her appointment at the MDA clinic. Let me just say, once again, how wonderful that organization it is. They are so organized. They allow us to see so many doctors, therapists and even wheelchair technicians all at once. I'll put in a plug here- if you have an opportunity to give a dollar to an MDA fundraiser- don't miss that opportunity. As a family benefiting from those dollars, it means the world to us! Faith hasn't been able to go to camp yet but I understand it's wonderful. We have been able to use the clinic every six months and they put $3,000 towards a wheelchair every three years. Think of all the families who are benefit from the organization. What a blessing!!
The MDA clinic was hard for Faith. It was one of her worst days for fatigue. Her main doctor- Dr. Janas-- her neurologist- was very concerned about her fatigue. She suggested that I call Dr. Brown and let him know that Faith was just not herself. Dr. Janas was worried and wanted Dr. Brown to know she was worried. We went home and called Dr. Brown's nurse and left the message. We received a call back letting us know that Dr. Brown would like Faith in the next morning at 9am. (Tuesday/yesterday).
Faith woke up yesterday still fatigued and with a headache. We made it to Dr. Brown's office and found out that this was his research day and he wasn't even scheduled to be in the office. He came in just to see Faith. When the receptionist told me that I started crying in the reception area. I am amazed at the wonderful doctors the Lord has placed in our path and their love and concern for us. What doctors do that anymore? Who comes in on their day off to see one sick little girl? Let me say right now if you are in this area and need a pulmologist for your child- Dr. Randall Brown at Georgia Pediatric Pulomonology is you answer! Time and time again he has gone above and beyond for our sweet girl. (Scroll down a few months to see the picture of Faith and Dr. Brown together.)
Dr. Brown had Faith repeat the breathing tests she took a week ago. He also took an x-ray of her chest. He came into our room and said to Faith, "Well I have good news, bad news, and great news. How would you like me to tell you." Faith was sitting in her wheelchair (because she was so tired) She leaned forward, looked Dr. Brown in the eye and said, "Tell it to me in the order it makes the most sense." The Good news- Faith's breathing tests had improved slightly from last week. But that was expected due to the steriods she was on. In other words, the steriod was masking the real numbers but the numbers had improved, and that was good. Bad news- Faith has pneumonia! Faith and I were both so shocked. She had no symptoms of pneumonia. This is her 10th time having it so we are (so we thought) experts. She had no fever, no cold, no coughing- just fatigue. She had seen three doctors in the past week and her lungs had sounded clear each time. They still sounded clear but there it was on the x-ray- pneumonia in her lower left lobe. The great news- we could take an antibiotic and go home. (i.e. not go straight to the hospital!)
Faith should feel much better in three days. If not, I have a feeling we will be in the hospital. Let me tell you- this child is so motivated to be well. She said, "Mommy, if I go to the hospital I'll never get any rest." We are so grateful for our wonderful hospital but she has been there often enough to know that getting well, not resting is the goal at the hospital. She is tired. She just wants to be in her home and in her bed.
Please pray for healing of Faith's lungs. We offer up a praise that she was able to go 14 months without pneumonia. We are also thankful that we caught this early enough to not have to go to the hospital! We also offer up praise for Dr. Brown- such an amazing doctor who came in on his day off when another doctor would likely have said to come in the next day or see another doctor who didn't know Faith as well. Dr. Brown is such a blessing! Please say a prayer for my sweet extended family traveling to Boston right now. I pray that they have a fantastic trip.
We will keep you posted on our girl. Thank you for your prayers and support!
Blessings,
Ann
29 May 2008
Faith had her appointment with our wonderful pulmolonogist, Dr. Brown, on Tuesday. Faith had continued to have tightness in her chest in the evenings but the "pained" seemed better with the help of the Motrin. We were anxious to see Dr. Brown and start sorting out these issues.
Faith completed her breathing tests first. You may remember how excited we all were last January when her numbers were the highest they have ever been. FVC was at 70%. That number was now down to 54%. Every number on the test had taken a significant drop. Well that answered a lot of questions about the chest tightness and pain. While she wasn't wheezing or coughing (her usually asthma signals), the tightness and tummy pain were our indicators this time.
Dr. Brown is such an amazing doctor. He always has a plan and it always makes so much sense. The first thing he did was increase her Symbiocort to 2 puffs 2x/day. We are doing this for three days to see if we can get a response from her currents meds. Friday morning is our deadline. If she gets worse in that time, we go on Orapred. If she stays the same, we go on Orapred. Even if she gets a little better I think we will be going on Orapred on Friday just to finish trying to open her back up.
Dr. Brown says her asthma is so bad right now that he can't tell if there has been a progression of the muscle disease (for Faith, that is Mito with her restrictive airway disease). Her pediatrician thought this was the case. Dr. Brown says we need to clear our the asthma so we can see what is going on with the muscle. After that we will tackle the tummy pain. Dr. Brown seemed to think the stomach issues may indeed be silent reflux - a common issue in Mito kids. Basically you get the reflux without the common side effects. But the damage is still being done on the tummy. If after the asthma issues are solved, she still has stomach pain, we have a reflux medication that he will put us on to see if we get relief from that. I have to say I was very excited to find out that Dr. Brown can treat this issue and we don't have to go in search of a GI specialist at this time! He said if the stomach is affecting this organ (the lungs) he can and should treat it!!
Faith is in good spirits. I know she is disappointed to hear this report and it is clear her energy level is not what it was. She is sleeping later in the morning. (Thank goodness it is summer vacation down here in Georgia!) She huffs and puffs if she climbs the stairs. We tried to go on our little neighborhood walk this past weekend (before our Dr. Brown appointment) and it was extremely hard for her. Thank goodness Daddy was there to help her along.)
So we are now in a wait-and-see mode. Dr. Brown said we weren't at the point where we needed to rush to the hospital. He said we DID need to get this under control in a hurry. We are supposed to go to Boston on Wednesday for a much anticipated family reunion. Faith has talked of nothing else but seeing the Freedom Trail, having studied American History this year. We are so thankful for her wheelchair but we are wondering how we will make all this happen. It is a quick trip up (just four days) and we are planning to be in CT and RI too. We are visiting Mystic, CT where my Dad's Mom spent every summer as a child.
Please pray for the following for us:
1. The healing of Faith's lungs. That she can regain some of what she lost.
2. Dr. Brown- that he will be able to sort through all these issues and find out what is really going on and help our girl.
3. For Hubby and I as we make decisions about the coming week. We are praying for discernment and that the Lord would make it really clear what we are supposed to do. Our family really wants to make this trip but what we want and what we should do are not always the same thing.
Please know that Faith is her positive, cheerful self. She is able to get up and walk around and participate in activities. She just can't do as much as she could and she fatigues much faster than she usually does. She is enjoying reading, writing a new book and watching some classic cartoons on Boomarang these days. She was able to get out with her good friend and me yesterday to see Prince Caspian. She enjoyed floating in the pool on Memorial Day. I am amazed at what she is able to do and the positive attitude she has when her lungs aren't working as they should. She is such an amazing young lady!!
We appreciate your prayers so much!!
Blessings friends & family!
19 May 2008
Dear friends and family,
Faith has been having some trouble with nighttime breathing for a few weeks. She has the sensation of her lungs feeling squished. She doesn't have it every night but does have it more often than not. Usually a puff of her rescue inhaler does the trick and she is able to sleep. However, last night she had this feeling accompanied by pain and was simply unable to get to sleep. Finally, at 10:30pm, we doubled up her rescue inhaler medication and she finally was able to get comfortable enough to sleep. Luckily, we had an appointment scheduled with Faith's pediatrician today.
Faith had blood work completed last week when she saw her genetistist, Dr. Fran Kendall. The blood work came back with low white and red blood cell counts. Dr. Kenall asked us to repeat the blood work to see if those numbers improved. We did go to in for the recheck and then discussed these other issues too. Faith has also been extremely fatigued the last few days. Dr. Gadea, Faith's pediatrician, said that her lungs sound good. Because she's not wheezing or coughing, Chance and I were confident it was no asthma or pneumonia. Dr. Gadea agreed but wanted to get a chest x-ray just to be sure. The x-ray was clear. At this point, Dr. Gadea feels that this most likely is a progression of the Mito- i.e. her muscles are overworking at the end of the day as she tries to take a breath.
We have an appointment with Dr. Brown, Faith's pulmonologist, next Tuesday. The breathing tests will most likely give us a good indication as to what is happening with her muscles. I would expect the tests to show a decline if indeed it is muscle weakness progression. This would involve the restrictive airway problem (muscles) as opposed to the reactive airway.
We also have our MDA clinic visit two weeks from today so that will be another time to have a good talk with the specialists about the progression of muscle weaknesses. The MDA clinic is full of the experts on muscle issues.
Would you please pray for Faith to not experience pain and problems with breathing tonight? (Dr. Gadea suggested some Motrin tonight may help with the pain.) Would you pray that she will rest well so that she can complete her Iowa testing this week? She is scheduled for testing Tuesday, Wednesday and Thursday morning. Please pray that the Lord will put all the right experts in our path so we can help Faith over this current hurdle we are facing!
In Faith-style, Faith is rather perky right now. She is in good spirits. I am planning to get her to bed early so she can make up for the rest she missed last night and be able to get up early tomorrow to get to the test.
Chance is in Seattle so we will update the website after he returns.
Thank you for continuing to read these updates and to pray for our girl!
Blessings, Ann
15 May 2008
Time for a massive praise party, my friends!! We just got a letter from Dr. Kendall. It turns out that all the DNA testing was completed on Faith's sample during her muscle biopsy. Dr. Kendall was able to take the report and send it to the Mitochondrial DNA expert at Emory. The bottom line is that Faith's Mitochondrial disease is not maternally-inherited. What does this mean? It means that I do not have Mitochondrial disease and Carue's odds of having it drop from 85% to 25%.
Dr. Kendall said at this point we have three options: 1. We can continue to give Carue the supplements- CoQ10 and Carnitore- these are supplements that athletes frequently take to help repair muscle and keep up energy. 2. We can do a full blood screen on him to see if there are any Mito indicators. (however, she said Faith's screens always look normal, so it may be the same for Carue.) In other words, we never would have known that Faith had Mito just from the screen. We had to have the biopsy to know for sure. 3. We can have a muscle biopsy done on Carue.
At this time, hubby and I just can't justify putting Carue through a muscle biopsy to find out. The odds are in his favor that he does NOT have it. Again, Carue has always been very healthy- no hospital visits, no extended illnesses, no major problems with organs. If any of these things were present, it might be worth it to find out. We are opting instead to keep him on the supplements and work on strengthening his upper body.
Hubby added a wonderful rope swing, rope ladder and climbing wall to our home playground equipment. The whole family is planning on working on exercises to strengthen our bodies. Summer is going to be like a really, really fun boot camp!!
Thank you for your prayers over this past week. We are praising God for this great news. We continue to pray for Faith that she will stay strong and healthy. She is a fighter! We are proud of everything she has been able to accomplish in spite of her disease. As we say on the home page, Faith has Mito but it doesn't have her!
Blessings and Love!!
12 May 2008
We are celebrating the one year anniversary of our little faith4faith website. What a year it has been! We appreciate all of you who come to check on our girl and our family. Your prayers and support mean so much to all of us!!
Last week Faith has an appointment with her neurologist (Dr. Kendall) who is now at Emory Genetics. The office is in Decatur on North Decatur Rd at Clairmont. For those who have known me for a long time, you know this is my old stomping ground. About five minutes from my childhood home, five minutes from my old high school, two minutes from where my Grandmother Faith lived and about 10 minutes from where my Dad and Sally live now. It was comforting to be in familiar territory and to see Dr. Kendall again. It had been over 10 months since we last saw her. She was in the process of switching from Horizon Molecular Medicine to Emory.
The results of our appointment with Dr. Kendall-- Faith is doing great. As you know she has been having stomach cramping off and on for a few months. They seem to be more off than on and seem to be coming at regular intervals. It may be more symptoms of moving us closer to puberty. Dr. Kendall and I decided not going to pursue Faith's GI issues with a GI doctor at this time. Dr. Kendall thought as I did that if we even mention cramping to a GI doctor they would run extensive tests. Dr. Kendall said to give it some more time, but as long as things are not compacted and there are not further problems, we will just wait and see. Faith is not losing weight (which is a great thing). In fact, Faith has gained a lot of weight. Dr. Kendall said she looked better than she has ever seen her look. That was so encouraging. Faith is in the 50-75th percentile for weight and 50th percentile for height. Very proportional- very healthy. Faith will see Dr. Kendall in six months.
I took our son Carue to the appointment because Dr. Kendall and I had spoken about his recent poor evaluation he received when we signed up for therapeutic horse riding. Carue was extremely weak on the horse and had a very hard time with his upper body motions. Dr. Kendall said we would chat about him at the appointment so I brought him along. We chatted and then she proceeded to do a full neurological test on him. She was concerned about his lack of upper body strength. She said that he was indeed quite hypotonic in his upper extremities. Then she sat and said to me, "Well I think he most likely has it." (It being Mito) We were talking in code because I didn't want Carue to know what was going on and Faith of course was picking up on every word of it and asking questions. I must confess I was very surprised that she thought he had Mito. Compared to Faith, Carue has always been so health and so strong. But again, we were comparing him to Faith and not his peers. As he took gym at Timothy Ministries or tried to play sports, it was really clear that he was not strong compared to his peers. I figured since he is so healthy that he just was weak and we needed to get him more exercise. People can just be weak right? But Dr. Kendall's experience has shown that when you have one Mito child and another exhibits muscle weakness, the odds of it being some "other thing" is highly unlikely. She said if he does have Mito- he clearly has a mild case- milder than Faith at this stage of the game.
Okay- so how will we know for sure if he has it? The tissue from Faith's biopsy is still saved in a laboratory freezer. Dr. Kendall will check to see how extensive the DNA testing was on her sample. We didn't do a lot beyond getting Faith's diagnosis because we knew we weren't planning on having more kids. They can do further testing now and see if I have Mito. If the answer is "yes"- then they can do a simple DNA blood test on Carue to find out if he has it. If the answer is "no", then the only way to find out is to have a muscle biopsy done on him. We just aren't willing to do something so invasive at this time. So we should know more in the next few months as the current tissue sample is tested more. If I have it, it is mild and most likely laying fairly dormant. We are putting Carue on CoQ10 and Carnitore (the Mito supplements) as of today. We actually put him on CoQ10 ourselves after the evaluation last week.
We are not mentioning this to Carue since things are not definite, so please be aware of that if you are around him some time this summer. Carue's only symptoms at this point are the muscle weakness and the speech issues he has had. He does tend to have GI issues from time to time but in general he has always been strong and healthy. We are spending the summer doing fun activities that will help to work muscle and see if we can help build up his strength without exhausting him.
How are we doing with all this news? We know that our Savior loves us and loves our kids. We know that He knit both Carue and Faith together in perfection. I know that He is standing with us and giving us the strength to handle all that lies ahead. I am very impressed at His confidence in how much He thinks we can handle but He knows we are doing it with His strength. And yes, we are sad and scared too. We are glad to have a wonderful family and friends who care and pray!!! We are standing strong- please stand strong with us!
Love you guys!!!
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