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21 April 2008Faith had an appointment last week with Dr. Schrader, orthopedist. When he saw her at the MDA Clinic in January, he was very concerned about the progression of her Mitochondrial Scoliosis. The good news is that her back was much better with the x-rays taken last Monday. Her top curve was 17 and bottom was 17. It was a slight increase on top but an improvement on the bottom curve. What does this mean? Bottom line right now- she doesn't need surgery or a back brace. Long term, we are unclear what all of this means. It seems to be some what perplexing to Dr. Schrader himself. Faith's spine changes with the way she is standing and how well her muscles can support her at that particular moment. In other words, x-rays in the morning might be better than x-rays taken later in the day. If she's having a good day strength-wise, her back muscles will be stronger. If it's not a good day, the x-ray will reflect that. We need to work at continuing to strengthen those muscles through wearing the Theratog and physical therapy. We are pleased for the improvement and the good news and we will continue to pray that her muscles will cooperate and support her spine!
The pollen has passed in Atlanta (the worst part) and we can go outside again and breath. This week has been wonderful with comfortable temperatures and gorgeous skies.
Thank you for your continued prayers!! Blessings-- 31 March 2008We do have several updates from the past two weeks. Faith had her eyes checked and received a new pair of glasses with a new prescription. It does seem that her stigmatism has gotten worse and the best the doctor could get her vision was 20/30. He was pleased to get her to that point. We will be going back in six months to have her eyes checked again. Her eyes have been quite itchy but it is normal for this time of year with all the pollen in Atlanta.
Faith also had an appointment with Dr. Lourie, her hand surgeon. We had concerns because both of her wrists had been painful for the past month. The good news is that the crack in her growth plate has completely healed. Also good news - the pain is NOT carpel tunnel issues. Chance and I were both concerned that it could be a recurrence of her prior problems. It turns out that the problem is muscle weakness that seems to always center in her wrists. While we were at Dr. Lourie's, we had some daytime splints custom made and we also were given some soft night time splints. Faith will wear the night time splints every night and wear the day time splints on days when her wrists need some extra support. The muscle weakness is just part of her mito so it is an area that will always be weak. We are thankful for all she can do with those wrists. She is still playing piano and violin- and loves them both! Carue came down with a sore throat and fever on Easter. On Monday morning I took him to the pediatrician. They swabbed this throat and he came positive for strep. Even though Faith was fine I asked them to go ahead and swab her too. She came up positive too! We were blessed to get the news early so we could immediately get her on an antibiotic. They are both well now.
We are in the middle of asthma season but we feel prepared with Faith's asthma meds and vest. Faith has had some wheezing but for the most part we have been able to keep this under control.
Faith and Carue were able to spend the weekend with my Dad and Sally while Chance and I went to the Family Life Weekend to Remember Conference in Atlanta. It was such an amazing weekend. Our pastor Dr. Crawford Loritts and his wife Karen were two of the main speakers. They are such wonderful teachers. They have been married for 37 years and have such a wonderful marriage. It was neat to listen to all their words of wisdom. It was awesome to spend a weekend together focused on our marriage. We highly recommend the conference to any married couple! http://www.familylife.com/site/c.dnJHKLNnFoG/b.3204559/k.F5BB/Attend_a_conference.htm. The kids were thoroughly spoiled at their grandparents' house!!!
Thank you for your continued prayers for our girl and our family!
5 March 2008We haven't updated the website in a while. Faith has been very healthy! What a praise! We have, however, added some new pictures.
8 February 2008We've had a rough two days - but we're now recovering. Faith came down with a cold (sore throat, stuffy head, cough). She had a rough night on Wednesday, but is doing so much better now. Your prayers were such a source of comfort for Faith and all of us. We know those prayers had so much to do with her getting through this so quickly. I know for certain that we will avoid a hospital visit- Praise the Lord! I fully expect her to be back to herself in a few days.
Thank you for your sweet spirits and love for our girl. It means so much that you are standing in the gap for us.
Carue has come down with the virus and has spent the day on the couch resting. I know he would prefer to be up and moving around but he is cozy on the couch and taking his meds without too much complaint. Praying this will clear quickly for him as well.
Blessings and many thanks friends!
31 January 2008We have such a wonderful praise today. According to Dr. Brown, Faith's lungs are the best they have ever been. Her volume lung capacity increased another percent. While that is wonderful, the most exciting thing is the way the smaller tubes in her lungs are opening up. The strength of her breath going out in the first second was up to 78%. I was in tears as Dr. Brown beamed and told us how excited he was by the news. We did put Faith back on Symbicort three days ago but this tells us she was able to maintain her lung function when we switched to the Flovent 110. Now that we are back on Symbicort, Dr. Brown fully expects those numbers to continue to rise.
An exciting thing is Dr. Brown asked us what we are doing for physical activity. I know it sounds crazy, but no one has ever asked us that question before. We've been asked about therapies we are doing, but not about what we are doing for fun - physically. It makes my heart soar to realize that this is something we can think now about. Faith's lungs are functioning so well and she is feeling so well that we are able to consider her doing physical activities for fun. Dr. Brown was thrilled to hear we had started walking a mile around the neighborhood. He encouraged us to do that. We are thinking we will join the local pool to get in some extra swimming. Now we can find out from Faith what she would like to try for a physical activity. It feel so wonderful for things to feel "normal". Faith was able to take off remove splint Monday. Her wrist is doing great. She had a little stiffness and swelling, but every day is better. She is even playing the piano for five minutes a day. Faith started swim therapy again yesterday and did great in the pool.
We claim all of this as a miracle- a healing from God. We just never anticipated that things would improve so greatly. We know without a doubt that "all things are possible!" Matthew 19:26- "Jesus looked at them and said, 'With man this is impossible, but with God all things are possible.'" Our prayer request now is that Faith's lungs continue to improve. She is also having some back pain. We are praying that will improve. She is going to the chiropractor once a week and that seems to be helping.
Thank you dear friends and family for continuing to lift our girl in prayer. We are witnessing the fruits of all those wonderful prayers. We love you all!
23 January 2008Sorry we haven't updated in a while but - Praise the Lord - we have had nothing to report! Faith is doing great. The Topamax seems to have been the answer to all Faith's problems. She still has not had a dizzy spell since December 26th. Our exciting news today is that Faith got her braces off her teeth. A year and a half of "metal mouth" has resulted in a gorgeous smile!
 The expansion of her palette means that there is plenty of room for more teeth to come in. Faith got her braces off at 2:30. So far she has had a tootsie roll, honey roasted cashews and a Rice Krispy treat. She is looking forward to having popcorn after dinner! She is one happy camper!! Next week will be a big week. Faith gets her arm splint off on Monday and we get to see what she is capable of doing. Hopefully we can get swim lessons going next week and start piano and violin gradually. Wednesday 1/31 we have an appointment with Dr. Brown (pulmolonogist) to check on Faith's lung function. I'm anxious to see those results.
Check out the snow pictures. It snowed twice in one week in Georgia. We hadn't had a good snow in Georgia since Carue was 15 months old. The kids had a BLAST!
Thanks for checking in on us!! Blessings
8 January 2008Faith had a great visit at the MDA clinic yesterday. I will continue to sing the praises of that wonderful organization - and specifically the folks at the Children's Scottish Rite MDA clinic. Faith and I arrived at 9:20 for our 10am appointment (traffic was kind to us today). By 9:50 we were in a room. We saw Dr. Janas (our neurologist) who has become such a good friend as well as a trust physician. She was so happy to see Faith finally feeling well after 4 months of feeling so poor. Dr. Janas checked Faith out and talked to us for a long time. Next, Faith had x-rays on her back and her wrist
 -- Faith injured her wrist this weekend and we were concerned that it may be dislocated-- Next, we saw the Physical Therapist and Occupational therapist. There were no big changes in Faith's numbers other than her hamstrings were tight and she wasn't able to get the same degree of flexibility. The therapists believed this goes to the growth spurt that Faith is going through. We were given some exercises to work on to help stretch those hamstrings. The social worker came in next and we had a good talk about insurance woes. No real answers but it was a good talk. Next came the wheelchair technician who told me how to make some adjustments that Faith will most likely need in the next few months. Next was the orthopedist- he told me that the upper curve in Faith's back was better but she had developed a lower curve that was pretty significant. He wants to see her again in 4 months for another x-ray and then he will decide if she needs to wear a back brace. I'm praying this doesn't happen but I'm glad there are things that can help her if needed. The doctor then gave us the news that Faith has a fracture in the growth plate of her wrist. It wasn't a break but a crack in the plate. (Faith over-extended her wrist while playing on Saturday.) Luckily we had put Faith's splint on her wrist. She was given a bigger and better splint (instead of casting) and she will wear it for three weeks to see if that clears it up. I am putting in a call to Dr. Lourie, Faith's hand surgeon, tomorrow to make sure we are all on the same page. I want him to follow her on this. Our last stop was with the Heart Center where Faith had a EKG and an Echo on her heart. The day was then over and it was 1pm. Can you believe we got all that done in 3 hours??? It is an amazingly well oiled machine. Please pray for healing for Faith's wrist. The next three weeks will be a bit different for her. No piano or violin. No swim therapy. We will have our wonderful physical therapist come to our home and help with back exercises and hamstring stretching.
God continues to send us the message that we need to slow down and pull back during this time. We will listen and obey.
Pray for Faith's back to be healed and for the curvature to stop so she doesn't have to be braced and surgery can be kept at bay. We have a lot of history of scoliosis on both sides of the family. It's genetic and the muscle weakness adds to the problems.
We appreciate your love, support and prayers so much. We want you to know that your prayers have been answered in so many ways. Faith is feeling so good. No dizzy spells since 12/26. She is full of life and energy. She took another one mile walk this past Sunday. If you had seen her a month ago you would know what a blessing this is. It is a joy to walk with her. The entire walk she says that she feels terrific!! I hope to work up to walking every day. Praise God for answering all our prayers!
Happy Anniversary to my sweet hubby. I have had the joy of being in love with and married to my best friend for 14 years today. He is the most amazing gift the Lord ever gave me.
Blessing to you all.
1 January 2008Happy New Year! We are praying for a blessed and healthy new year for each and everyone of you. We are praying the same for our family and especially Faith. 2007 was a rough year for our girl. Her ability to endure and see the best in everything is inspirational. Please pray for the Lord to continue to bless her with this wonderful attitude.
Faith really turned a corner on December 26th. We don't know if it was because she ended the Prednisone on Christmas or if the Topamax was kicking in. She woke up feeling great that day and it has continued through today. She has not had a single dizzy spell in four days. This is such a praise and an amazing answer to prayer. Her energy level seems so much better. A few days ago, the weather was warm and sunny so we took a walk around our neighborhood. We wound up walking 9/10th of a mile and Faith walked every step of it on her own. I was glad to do this while Hubby was with us. I knew he could carry her home if she didn't make it. I'd love to start doing this on a regular basis once the warmer weather comes back in. The whole walk Faith kept telling us that it was making her feel healthy to be exercising. With Mito, it's a fine line between exercising enough and not using up too much energy. At the end of the walk, Faith was really tired and suggested we bring her wheelchair next time. We'll see how it goes. I guess it would be good exercise for me to be pushing her for part of that walk.
We have some big appointments coming up. January 7th we have our MDA clinic visit. This is the wonderful visit we have every six months with Dr. Janas and many of Faith's specialists. She will see an orthopedist for her back this time. She will also see the cardiologist (she does this once a year) to make sure the heart isn't having any problems from all her latest complications. We may ask to see a GI doctor just to ask some questions about Faith's tummy pain lately. It will be a long productive day. I'm personally looking forward to sitting down with Dr. Janas to discuss all these tests and her final thoughts on it all.
January 23rd, Faith will get her braces off. I suspect popcorn stock will go up immediately! On January 31st we will meet with Dr. Brown, Faith's pulmonologist, to see how Faith's body has done off the Symbicort. I'm not convinced that was causing the problems but I'm so hesitant to change anything now that she is feeling good for the first time in a very long time. We added Nasonex to Faith's medications and it seems to have solved the perpetual runny nose issue she has always had. I pray her lung capacity has been maintained and we will not have lost any ground there.
Please pray for Faith's protection now that we are officially in cold and flu season. This time of year is so hard. We have to find a balance in having activities to participate in and avoiding exposure to germs. It is quite the juggling act. We are counting on the Lord to guide our footsteps there.
As we enter this new year, we thank God for each and everyone one of you. Your love and support mean so much. You have helped us make it through this trying year. We love you all! 26 December 2007We received some good news about Faith's health just before Christmas. Although she's still having dizzy spells (though she has started migraine medication), the CT scan was further reviewed and thought to be just fine. The area of concern is likely just still-undeveloped sinus cavity that will form as she continues to grow. Also, the bloodwork checking her thyroid, etc. came back fine. Praise God! Also, Faith turns 10 tomorrow. Happy Birthday, Faith! 20 December 2007The last few days for Faith have been hard. Her fatigue level has been intense. She has had increased pain in her legs and increased dizziness. Yesterday late afternoon we were able to get Faith in to see her wonderful pediatrician Dr. Gadea. Dr. Gadea was most concerned about the fatigue. We talked for a long time and she decided that we should take Faith to Scottish Rite this morning and have labs run. (So she could fast through the night). This worked out perfectly because her ENT appointment at Scottish Rite was at 9am. Hubby, Faith and I made it to the Scottish Rite lab by 7:30am. The traffic was quite light for Atlanta! We got her labs and had time to have breakfast in the cafeteria. Then we rolled Faith through the underground tunnel to the medical office. We saw a new ENT, Dr. Bauer. He was wonderful. He took time to hear Faith's story- it's a long one. He looked at the CT report and also at the CT films themselves. He believes the image seen on the scan was not a sinus infection. (The cheering you hear is Faith because she doesn't have to continue that icky antibiotic!) Instead, it looks like a cyst. It does NOT have the appearance of a tumor because it is not pushing or being intrusive. He did want to consult a neuro expert at Emory and get a second opinion about how the cyst looks. He will call us back with those results which he hopes to have today or tomorrow. He thinks most likely we will repeat the CT and MRI in three months and see if anything appears to be changing with the cyst. Interestingly he believes that this has nothing to do with her dizziness. Just a bonus we found it with all the testing.
Dr. Bauer believes Faith is having migraine variants. There is lots of into out there on this topic but her symptoms seem to fall right in line. Lots of frequent but sporadic episodes some with sparkles 'behind' her eyes. None of the long, painful, head throbbing migraines. He said Dr. Janas, the neurologist, would be the one to treat her. I was on the phone with Dr. Janas office before we left the ENT. I left her the message about the migraines and she agreed. She is putting Faith on a five day course of predisone to give the migraines a good kick out the door. And then she is putting her on a very light dosage of seizure medicine to prevent them from coming back. It will take about 20-30 days for it to all kick in- if it works for her. The only side effects of the medication are it can affect the appetite (make you not hungry) - it can affect your mental sharpness (knowing Faith she will immediately let us know if she feels less than sharp) and you HAVE to drink water to avoid producing kidney stones. Well... you all know our long term struggle with the water so here we go again. Dr. Janas says at bare minimum she will have to drink two water bottles every day. Pray for that one my friends!!!
We feel like we are starting to get some answers. There are still things unanswered. The weight gain and puffiness seems to be pointing to the beginnings of puberty combined with Faith's lack of activity (due to low energy). All of this in someway could go back to puberty and hormones. We were always told that there were a lot of unknowns as we went into puberty. There just aren't a lot of mito kids that have made it that far so we are really forging new territory. Pray for Faith's body to handle the many changes it will be making over the course of the next two years.
Another prayer would be for this cyst to be something that has been there all along- undetected. Pray that it is not causing any problems and that it can remain there undisturbed and not cause problems to its surroundings. The doctor said the cyst is in a very difficult place to reach. I didn't even ask a question about that because I figure we'll just not put that on the list of things to consider until there is a need.
Faith's prayer continues to be to stay out of the hospital for Christmas and her 10th birthday (12/27). We are praying we can keep her at home and have a wonderful family time during the holidays. We are praying this medicine will make her feel better. Thank you for your continued concern and support. You are a blessing!! Merry Christmas and Happy Birthday to my brother, my father, Faith and JESUS! (It's a busy week!!!)
16 December 2007 We had a wonderful time taking the kids to NYC. It was very cold- in fact the first day we were there the kids got to see it snow very hard for about an hour and a half. The city was predicted to have 2 to 4 inches of snow that day but it warmed up just enough to turn the precipitation into rain. Carue got to play in the snow in Central Park- a highlight of the trip for him. Quite honestly this trip was not easy for Faith. I think she spent most of her energy trying to keep warm. We had her bundled in many layers and she was all wrapped in her wheelchair but I think the energy it took just to stay warm used what she had. Most of the time she was very, very tired. She did seem to perk up after each meal. The great news is she never got "sick". She didn't run a fever and she had no problems with breathing. The dizziness has continued even after being off the Symbicort since Thursday. So we are starting to think it really is the sinus issue. We were able to push the ENT visit up to 12/20 (this Thursday). We are going to see if we can get it even sooner by calling in on Monday. Faith continues to be "puffy" all over and that concerns us too. She is in wonderful spirits and there is no place like home for feeling good. She is very content now that we are back in our house. Faith seems to be so much better today. She is really back to her perky self. We are anxious to get her into the doctor and get to the bottom of all these issues. The latest symptom is that the room seems to be tilting for her. The sinus thing is really starting to mess with her inner ear and I guess cause vertigo. We'll post more after our appointment on Thursday to let you all know what the doctor says.
Thanks for your prayers. We were so happy to be able to make this trip with the kids. Carue loved seeing the city for the first time. I'm glad we were all able to experience it with him! Blessings- 11 December 2007Faith has had a rough week with dizziness, headaches, puffy face, and overall fatigue. After being on this heavy dosage of antibiotic for five days we are realizing that the sinus infection is not causing the dizziness or we would have had some relief by now. We made the rough decision yesterday to call Dr. Brown and ask him to remove Faith from the Symbicort. We really feel like we are out of options at this point and it seems to be the one factor left that could be causing the problems. We took her off as of last night and have put her back on Flovent 110. She was on Flovent for years. It is a maintenance drug for her asthma. We are hoping it will "maintain" the good results we got from the Symbicort. I'm not sure how long it will take to get the drug out of her system. She has already had one pretty good dizzy spell this afternoon.
Faith went for allergy testing today and we found out the child is allergic to NOTHING. I have never been so shocked in my life. She has lots of things that trigger her asthma but no true allergies. This is a blessing that we had not expected. It was one area that we thought might be causing some dizziness and other symptoms but instead it is another thing to check off the list. We are anxious to see the results in taking her off Symbicort. We also have the ENT visit in January as another possibility to find an answer.
Please pray for us as we plan to take the kids to NYC on Thursday. Dad's frequent travel has allowed us to have free airplane tickets and free hotel so we can take a mini-vacation. We will be back Saturday night. Carue has never been to NYC so we are excited to take him to see the sights. Faith's wheelchair will allow us get around without her having to do a lot of walking. It will be a quick visit but we are looking forward to seeing the big Rockefeller Christmas tree and all the windows on 5th Ave. Carue is excited to get a look at the Statue of Liberty from the Staten Island ferry and to see the Empire State Building. He also loved stories about Balto. Balto is the dog that saved Alaska. Apparently there is a statue of Balto somewhere in Central park so that will be on the to do list as well. Please pray for Faith to feel well enough for us to go and for her to stay healthy while we are there.
Thanks you for your prayers and support-
Blessings-
6 December 2007We received the CT scan results yesterday afternoon. Faith definitely has a sinus infection and they are going to treat it hard with a 21 day round of antibiotics. Ugh! There were "other findings" that were "a bit concerning" and "need further evaluation by an ENT". I scheduled an appointment with the recommended ENT for January 13th. The pulmonlogist is sharing the results of the CT and MRI with the ENT and we'll see what they have to say. I got a copy of the report and can't decipher it at all. It is so full of medical terms that it's impossible to figure out. I tried my best to look up words individually, which was impossible. All I could gather is there is some type of cystic change in part her cranium. It seems to be "closed" or have a thick mucus surrounding it and some type of change has taken place possibly to the bone. I think they want to clear up the infection and possibly look again. Faith gets her braces off on January 23rd and I think it would be helpful to everyone to redo the tests once the braces are off so they can get a better look. I'm concerned but not too concerned because I feel like if it was "urgent" they would have called and said, "We have set up an appointment for you tomorrow with and ENT get there ASAP." Instead I was asked to set up the appointment and there really seemed to be no urgency.
I spoke to my friend's father-in-law last night. He is an ENT. I emailed him the paragraphs I couldn't understand. He is looking at them this morning and will let me know what it says. He said he would be very surprised if her dizziness is caused by a sinus infection. He believes the type of dizziness she is having sounds more like a medication problem. As I thought about that I realized that most of these symptoms started around the time she began Symbicort.(I quite honestly can't remember if they started before or after there was so much going on at the time.) I did some research on the side effects. Dizziness and stomach cramps (she has been having both) are the most common issues. So.... I'm going to wait till she finishes this round of antibiotics and see if the dizziness goes away. If not, I'm going to ask Dr. Brown if we should cut her medication dosage in half to see if it helps. We have had such amazing results with her lung function on that medication. I'm fearful at some point we will have to choose between dizziness and lung function. Since the dizziness is not debilitating, at this point I would opt for lung function. We have also decided to get Faith tested for allergies. She has never been tested so we are going to do both the scratch test and the blood (for food allergies). Maybe this will give us some insight too. Faith will have the allergy testing completed next Tuesday. Thanks for all your prayers friends. I feel like we are getting closer to an answer to this dizziness.
Blessings-
2 December 2007On Monday 11/26 we had a two month check-up with Dr. Brown. On 9/26 (see the post) he put her on a new drug called Symbicort made specifically for people with restrictive airway disease. The results were miraculous! Faith went from a low of 53% lung capacity on 9/26 to 69.9% (Let's call it 70%!) today on 11/26. Dr. Brown is looking into the dizziness issue. With Faith's puffiness in her face, chronic cold that won't go away and dizziness, he thinks it's time for a CT scan of her sinuses. She is schedule to have the CT scan this Monday 12/3. She may have an infection in there that needs something heavy duty to get rid of it. Wouldn't it be wonderful if all of this dizziness came down to a really crummy sinus infection? I'm glad to check it out since we are running out of things to check. Faith and I bought her a notebook today to keep track of her dizzy spells. She had six listed today. Most were very quick. We are keeping a detailed journal of when they hit, what she was doing when it started and the severity of them. Maybe it will also give us some clues. Thanks friends for your prayers. They are being heard! It's awesome to witness a miracle. And each of you is part of it!! Blessings- 24 November 2007Thank you for your prayers. Faith is recovering nicely from her cold. Lots of fluids and rest were all it took! 20 November 2007We have wonderful news to share just in time for Thanksgiving. Faith's 24 hour EEG report came back and it was completely normal! Since we know that she had five dizzy spells while the device was on, we know for sure the spells are not seizures. We are relieved beyond words that she is not experiencing seizures. Now we have a long list of things we know the dizzy spells are NOT. We are down to a few possibilities of what it might be. (Hormones or migraines- both of which will be so much easier to treat than seizures.) We are praising the Lord for this wonderful news on our girl. At the same time, will you please say a prayer for our girl tonight? She started feeling sick yesterday evening and it has gotten worse throughout the day. Whatever she has seems very similar to what she has a few weeks ago that got us to the hospital. The difference is-- this time she is drinking lots of fluids. We are hoping we can stay on top of her hydration and avoid the hospital run. Tonight will be the real indicator of how this virus/cold will go. Say a prayer her body can have the energy to fight this bug. Thank you for your love and support. We are so blessed and give thanks for each of you! 8 November 2007 We made it to the EEG by our 10am appointment. We were the only people there and the environment was relaxed and delightful. The woman putting on the equipment adored Faith instantly and they talked and talked about everything. It made the time go quickly which was a good thing because we had a comedy of errors. It took about an hour to get all the head measurements and the electrodes in the correct place. Once there were all on (see picture) we realized there was a broken piece that connected to the main machine in 1/2 of the electrodes. They had to be taken off and reapplied and let me tell you they were GLUED on!! So that took another 45 minutes. Once we knew those were all working, Faith was gauzed into place (see picture). We were connected to the machine we would carry home in a fanny pack to record her brain waves for the next 24 hours. The machine was turned on and ...it was fine but then had an error message. We had to trade out the machine which meant taking all the gauze off her and and then putting it back on with a new machine on her. Not too bad- another 20 minutes to get that all in place. Again, without the delightful Miss Cindy, the tech, to keep the conversation flowing it would have been a nightmare. The worst part of the whole thing was the smell of the glue they used to put the electrodes in place. To make it better they turned on two fans to move the air. Plus they used a pencil air blower to quick dry the glue and electrode to her hair. There was a lot of noise in the room and yet we were still able to talk. The best part of the whole thing? They had a TV in the sleep study room and Carue could watch over two hours on uninterrupted PBS shows on a bed :-)! Trust me it was better for all of us to have him not in the noisy room for 2.5 hours!! :-)We go back tomorrow and get the electrodes off. For today, we are keeping up with all our activities in a log. Any time Faith has a dizzy spell we push a button and record the time so they doctor will be able to review that exact spot on the tape and see if they can "see" something on the EEG to go with that dizzy feeling. So far we have recorded three dizzy spells. This is an answer to prayer. I was fearful we might go through all this and then have a day of no dizzy spells. This is one day I've been grateful to have them so we can find out if it is indeed a neurological thing.  The tech said that it usually takes about 10 days for the results to be reviewed and put into a report. It make sense because it is 24 hours of data to review. We'll keep you all posted. Thank you so much for your concern and your sweet notes of encouragement. You are all a blessing to us!
7 November 2007Faith's neurologist, Dr. Janas, called me last night to discuss the results of all the recent tests. The blood work, MRI, and the ear exam all were fine. The EEG that Faith had while in the hospital was considered abnormal. She is having "sharp spikes" on the top and right side of her brain. They are not seizures but indicate the propensity toward seizure activity. Seizures are very common in Mito kids. Dr. Janas is hesitant to put Faith on seizure medication based on the hospital EEG results alone. I haven't read anything good about seizure medication side effects, so I'm praying we can just avoid that as long as possible. My prayer requests are: 1. I am praying her dizzy spells are not seizures and we can avoid medication that will cause fatigue, loss of appetite and a host of other things that can do Faith no good except to avoid seizures. 2. I'm praying that the dizziness will go away. They went away for about two weeks but are now back with intensity. 3. I'm praying that she can just be healed. It feels like we are on a scary mito roller coaster ride and we can't get off. 4. Please pray for Faith's continued good spirits in the face of these trials. Her perseverance is inspiring. We are scheduled for the ambulatory EEG tomorrow morning (Thursday) at 10am. I hope this will give us more information to work with. Thanks for your concern and most importantly your prayers. We couldn't make it without you and our loving Savior!! 2 November 2007Last week turned out so differently than expected. Faith was scheduled for her MRI on Monday and her ambulatory EEG on Tues/Weds. However, when we got home from church on Sunday, Faith started feeling really crummy and began running a fever. Things seemed to go downhill rather quickly. The fever continued into Monday and Tuesday. Her asthma really kicked in. On Tuesday morning, it became clear that we weren't going to be able to get any more fluids or meds in her. Faith told me she needed to go to the hospital. We went straight to the Children's/Scottish Rite ER. They quickly got her into a room and onto an IV. Her lungs were tight so they did a chest x-ray. She did not have pneumonia- Praise the Lord- the Vest is doing it's job!! They did get her on a steroid to help open her lungs so she could breathe easier. They also did blood work- which was clear of bacterial infections. The bottom line was she had a virus and her body was having a metabolic "crash". She couldn't walk when we got to the hospital. Usually after a bag or two of fluids, Faith is like a new person. This time she was much perkier but still couldn't walk. The ER doctor decided he wanted to admit her for observation. Basically he wanted her walking before she left. We were sent to a room and Faith spent the rest of the day/night/next morning on an IV. By the morning, she was back to herself and able to walk again. She had a regular EEG while she was in the hospital. We'll add a picture to the website. Faith was discharged on Wednesday afternoon. She is feeling better every day but still tired most days. We have rescheduled the MRI for this Monday. I am waiting to talk to Dr. Janas about the EEG hospital results before rescheduling the ambulatory EEG. Faith a dizzy spell yesterday. It was the first one she had in over a week. It will be good to get the MRI done this coming week.
We are discussing Faith's activity levels as we move more into the cold and flu season. Colds and viruses are so hard on her body. We will have to make good choices and pray that her immune system can build up. Thanks for praying for her. Keep those prayers coming. Especially as she has her MRI on Monday at 2pm. We are having lots of tests run to try and figure out why Faith is having dizzy spells. While she was in the hospital on 10/31/07, they ran an EEG test on her as well. I bet the test will show that her brain as being VERY smart and sweet! I love how my sweet girl smiles no matter what trial she is going through. She really does have Jesus in her heart!
22 October 2007Faith had an ear test this past Friday afternoon. The test showed no pressure or fluid build up in her ears. However a hearing test showed hearing loss in her left ear. This is not the ear she had an infection in a couple of months ago. The loss is at high frequencies - so she is not losing the sound of speech - but this hearing loss might be affecting her balance. We are meeting with her ENT, Dr. White, on Tuesday to get his opinion. Faith is scheduled for an MRI on Monday, 10/29. They told us to bring her favorite DVD. She apparently can watch it in the machine while having her MRI. On Tuesday, 10/30 she will have an ambulatory EEG, which means she will get the equipment on that day, wear it all day and night, and go back the next day to have it taken off. At some point we will pull the info from the blood tests, ENT, EEG, and MRI all together with Dr. Janas (Faith's neurologist) and see if we can get to the bottom of the dizzy spells. The good news is that in the last three days Faith only had one dizzy spell. What a blessing! Please keep praying for our girl. Especially for all the tests she has coming up in the next week. You are all a blessing to us!
18 October 2007Faith has been having dizzy episodes occasionally over the past month. In the last week, the episodes have become more frequent occurring about four or five times a day. On Tuesday, she had an episode that lasted four hours and included strong headache pain.
We were able to quickly get Faith into an appointment with her neurologist yesterday. The appointment went well. The doctor was some what perplexed. She suspects intermittent vertigo, migraines or inner ear issues. We are tackling all three at once to try and get some answers. We went down to Scottishrite yesterday afternoon to have blood work labs. Faith will have a 24 hour EEG in the next week or so. She will walk around with it on in hopes of capturing some of these dizzy spells. Faith will also have an MRI in the next week or so. A specific prayer request would be that they do not take her braces off for the procedure. The doctor mentioned they may have to do that. I can't imagine the pain and discomfort it would be to take off your braces and then get them put back on so I'm praying that just doesn't have to happen. We are also going to see an Otolaryngologist (sub specialty ear doctor who deals specifically with dizziness issue.) The specialist our doctor recommended was not on our insurance plan so I'll have to do some investigating today and see if we can find someone good. Faith also seems to be having allergy issues or has a cold. She has a runny nose and cough. We are going to up the Vest today to keep things moving. We'll also get the nebulizer going if we need to.
Thanks for checking on us and keeping us in your prayers! 1 October 2007Faith's ear is 100% better. The swelling is down in her face. She is also doing better with her water. Thanks so much for all your prayers! We had a great weekend of Mito Awareness here in GA. The Governor declared September 28, 2007 "Mitochondrial Awareness Day" in the state of Georgia. It was also the date of a wonderful fundraiser for UMDF (The Organization that is looking for a cure for this horrible disease!), "Music for Megan." It was a wonderful evening and a great concert. The next night was an event called, "It Only Takes a Spark." It was a dinner and action for the Foundation for Molecular Medicine. This is a group of Faith's doctors who are raising funds for clinical trials for our Mito kids. It was a lovely evening and I hoped it raised a lot of money for those clinical trials which will hopefully show which supplements are helping our kids. Please continue praying for our girl!!
26 September 2007Never a dull moment for Faith. Today while she was having physical therapy at home Faith's therapist and I realized the right side of her face was starting to swell. Since she was continuing to have ear pain, I thought it might be connected to her ear infection. I contacted the pediatrician and they were able to get her in at 3pm. We hopped in the car and went over. Turns out Faith's ear infection had gotten much worse in the last 48 hours. So we were prescribed 2 new meds. However, the pediatrician didn't feel that her swelling was due to her ear. The suggested checking with the dentist. I contacted our wonderful dentist who immediately saw her and concluded the swelling was no due to her teeth or mouth. So we don't know what is causing the swelling. I am praying that the new antibiotic and drops will solve the infection and perhaps lessen the swelling. If not, our next step would be to have Faith get a cat-scan to see what is causing the swelling. The good news is she is having no pain with the swelling. Praise God for that. So pray for healing for this latest issue and that Faith will stay pain free! Blessings---
Faith had her pulmonologist appointment this Monday with Dr. Brown. I confess that I was shaking with nervousness while she breathed into the machine. I wanted to believe there could be a halt to this rapid decline of her diminishing lung capacity but for the past year and a half it was falling sharply at every visit. As she took the test, I new friends and family were home praying for her and her appointment. The technician and I cheered her on as she breathed into the machine that would calculate the results. I asked for a copy of the test results and tried my best to interpret them. Dr. Brown came into our room and said that Faith had held steady for the last three months and in fact had a very small increase. Amen and Amen! I can't tell you the giddy relief and thanksgiving that flooded my whole body and soul.
Faith and I love Dr. Brown. He is a favorite because of his genuine love and concern for Faith. He completely "gets" her and always directions questions and answers to her. Such a relief to not have a doctor talk about you to your mother but talk to you. Dr. Brown seems to really get a kick out of Faith and her very smart, intuitive questions concerning her own health. He takes time to carefully explain to her but doesn't attempt to put it on a child's level- he understands that she is a smart cookie and he can talk to her on her level!
Dr. Brown was very excited about a new medication that will hopefully continue to help Faith's lung capacity. It's a inhaler and will replace one she is already on. The good news is this one tastes so much better. The last one she was on was awful and she had a very hard time taking it. Dr. Brown is so excited about this medication and wants us back in 2 months to see if we can see some measurable results.
Dr. Brown also had a wonderful idea about how to get Faith to drink more. I told him our dehydration problem and he thoughtfully considered it. Then brilliantly said, "The problem is that we have not been looking at water as a medication." He went on to explain that Faith has to have water just like she has to have medications to stay healthy. Therefore, at specific times of the day a partially filled cup of water should be set out and "taken" as medicine would be. Dr. Brown went on to explain to Faith that her "thirst thermometer" had been reset to a very low setting. When you don't drink you don't get thirsty. You can not sit around and wait for the thirst to come back you need to bring it back by drinking. Thus, water as a medication. This was a concept Faith could grasp! Dr. Brown also suggested some protein water (Accelerade) that his daughter's enjoy. It comes in four flavors (as you know Faith does not like flavored water). We went to the store and bought one of each. Faith actually liked the fruit punch and the berry! Yesterday between the Accelerade, the apple/banana juice we found and her beloved Fiji water, she was able to drink more in one day than she did all last week. What a blessing and a miracle! The key for me is to put the cup there and not make it optional. We are on a mission to reset her thirst thermometer.
Faith is recovering from a middle and inner ear infection that was diagnosed this weekend. She's on an antibiotic and ear drops. Yesterday was the first day her ear felt better so I was thrilled she had improvement. I know the lack to ear pain will help with drinking as well.
Please continue to pray for Faith to get her water levels where they need to be. She is making great improvements and we need to stay diligent to continue the process.
7 September 2007Today is Carue's 8th birthday. Happy birthday, buddy!!! We had a wonderful day at the Atlanta Zoo and really enjoyed the new MeerKat and Warthog exhibits. We also were excited to see the baby panda. She turned 1 yesterday. Faith lost her footing while we were at the Zoo and took a tumble that really hurt her ankle. She seems fine but is having pain tonight. We had the wheelchair with us so she spent the rest of the day riding and not jumping in and out as we got to exhibits. It was good for her to be able to see it all and not use too much energy. We continue to praise God for His provision of this wheelchair in her life. She is able to do so much more than she could in prior years. We got a report from Faith's Mito doctor concerning the big blood work up she had in August. Her CoQ10 levels had increased but not to the level required to get her on the Creatine (the next supplement that will be added to her supplement regime.) Dr. Kendall has told us to move her up to 800mg/day of the CoQ10. She has been on 500mg/day since we received her diagnosis in December '05. For Faith this means going from 3 giant pills in the am and 2 in the pm. To 4 in the morning and 4 at night. Faith is such a trooper about it all but those pills are huge and she also has to take the Carnitor both in the morning and at night plus all her respiratory/asthma meds. It's a lot for a girl to take. The other news from the report was that Faith is dropping Kreb Cycle intermediates in her blood. Dr. Kendall says the fact that these are present in her blood gives another confirmation to her diagnosis. (i.e. if she didn't have Mito these would not be present in her blood). However, these had never been present in any prior blood work. Dr. Kendall says it does not indicate a progression of the disease. Instead these Kreb Cycle intermediates are dropped into the blood with the patient is stressed or dehydrated. Well those of you who know us well know that keeping Faith hydrated has been a life long challenge. We have done everything we know possible to get fluids in Faith. She doesn't like to drink anything except water. Even then we are lucky to get 11oz in her per day. With her disease, she should be getting 60oz/day for her body to do what it needs to do. We are working on an incentive plan with her to get her to get more water into her. We have also explained to her how critical it is for her to give her water this fluid. We are realizing that while we have been praying for her to get enough water into her body we have not been diligent in asking for prayers for this. Would you please join us as we pray that Faith realize the importance of this and that her body would begin to crave the water it so desperately needs. We are grateful for your continued prayers for this sweet girl!!! 26 August 2007Faith had her appointment with Dr. Kendall (geneticist and Mito expert) on Tuesday. Dr. Kendall thought Faith looked good, especially considering what she had been through in the last six months. Dr. Kendall is very concerned about Faith's lungs and wants us to keep a close watch and keep her updated. Faith is seeing her pulmonologist, Dr. Brown, every three months so we should be able to monitor her closely. Faith had an extensive amount of blood work done and we will hear back on all of that this week. Dad and Mom went to an Atlanta Mito parent's meeting where Dr. Korson was speaking. He works in Boston and again is another Mito expert. We were given some helpful new information especially concerning the balance between getting enough exercise to keep limber and toned without causing fatigue and about getting enough fluids. Fluids are so critical to the mito kids. Faith should be getting 60oz of fluid a day. She is nowhere close to that number. We will have to find creative ways to get her to drink to avoid having IVs in the future! 15 August 2007We have just returned from a wonderful vacation in SC. It was a wonderful time of relaxation that my Dad and step-mom provided for us. We will update the website soon with pictures. The kids' Uncle bought them fishing poles and they both LOVED fishing and caught quite a few. We threw them all back the fun was in the catching! Faith is doing so well. We have recently switched her COQ10 to a different type and it seems to have made a big difference in her energy level. One morning we were at the beach. After 3 1/2 hours in the sun everyone was ready to head back to the house for a rest... everyone except Faith! This is amazing!! Her health is so good right now. She is so diligent about doing her vest twice a day and taking all her meds. Homeschool started this week. Faith is starting 4th grade and Carue is starting 2nd. We have so many fun things to learn this year. Today was the first day we have all been excited about starting up again. I'm glad we all got excited before school started. Faith has a big appointment with her Mito doctor a week from Tuesday. This is the meeting we have every six months. She will have a lot of blood work and we'll see how things are going. If her CoQ10 levels are correct, we may be starting another supplement that may help to slow the progression of her disease. Please continue to pray for Faith's good health to continue. We are praying that this homeschool year will be a time of joy and learning together as a family. 16 July 2007Faith had her six month clinic visit at the MDA clinic today. Faith's mitochondrial disease falls under the list of diseases covered by the MDA. This is a blessing because it allows us to go to the MDA Clinic (at Scottish Rite Hospital) and see many specialists and doctors at one time. The whole experience is wonderful and so well organized. When we arrived we were immediately seen by a nurse who checked Faith's weight and height and asked if she has had any hospitalizations, surgeries or med changes. Then we went to a room. As soon as we were seated, a PT and OT therapist came into the room and did a screening to see how she was doing in strength, stretching, etc. Her hand strength had declined just a touch but everything else was holding steady! Next Dr. Janas, Faith's neurologist, came in to check her. She went through Faith's health history of the last six months (quite extensive this time with all our hospital visits!) and did a thorough check of Faith. She said Faith looked great! We talked about her lung issues and whether or not Dr. Brown thinks it is a progression of Faith's disease. (Dr. Brown does believe it is a progression but only time will tell). After Dr. Janas, Faith saw Chuck who was the wheelchair "engineer". He came in to check Faith's chair and lowered the footplates by two notches. Those legs of hers have been growing this summer! Lastly Faith had an X-ray of her back to check the progression of her Mitochondrial Scoliosis. We will get the report on that in two days. The whole thing only lasted 1.5 hours instead of the 4 we were told to anticipate. We were so excited with how quick it was over and how good the reports were that we went to Steak and Shake and got a milkshake to celebrate! It is wonderful to get good reports!!!15 July 2007Faith made it through her first major cold since getting the Vest. She had a cold that turned to a respiratory problem. We went from 2x a day to 4x a day on the Vest. Faith was able to cough productively. With the use of the nebulizer, Faith was able to make it through the cold in just 48 hours without getting pneumonia. We are so grateful for this vest! We are also very grateful for our dear friends the Kral family who organized a read-a-thon during the month of June to help us pay for the Vest. Through the efforts of Faith's friends and kids who had never met her but wanted to help her, they raised over $7,000 to help fund the Vest! Thank you Kral family for your love and support!!! We had a great time on Saturday celebrating with some of the families who participated. We will update the website with some pictures from the "Embracing Faith Read-a-Thon Celebration" soon!30 June 2007Faith had her appointment with Dr. Brown, the pulmonologist, on June 28th. Our praise is that her lungs were crystal clear. The new "Vest" machine she is on twice a day is really doing it's job. The other news is that her restrictive airway disease (or the muscles used to breath) has gotten worse. She has gone from 73% to 58% in just over a year and three months. We weren't suprised by this since she had that horrible pneumonia in March but we were hoping for better results. We are working on building the muscles back by doing breathing games- we will pray that there is some improvement prior to her visit in September. The reality may be this is just her disease continuing to progress. We will continue to pray for improvement!25 June 2007We have just returned from a glorious vacation to Northern California. Dad had a business trip to Santa Rosa. Because he travels so much, Dad had enough points for the kids and I to travel for free. We all needed this vacation after having such a hard spring. We stopped in San Francisco for two days on our way to Santa Rosa. The weather was great (chilly compared to Georgia). The skies were so blue and the air so clear. We took Faith's wheelchair and the vest with us. The wheelchair allowed us to do so much. It's funny how people think wheelchairs are confining. For our family, it has given us more freedom than we have ever had. Faith was able to tour San Francisco, hike through the Muir Wood Redwoods (they had a paved hiking trail), and see everything in Santa Rosa.It is the year of Joe Cool (Snoopy) in Santa Rosa. There are 95 Snoopys all over Santa Rosa. The kids were on a mission to find as many as they could. See our sampling in the Snoopy section. Faith's favorite was the Rainbow Snoopy. He had a heart on his hand that said, "When you body gets tired let your heart take over." Faith loved it! We will include a picture of her with that Snoopy on the front page. On Thursday, Faith has her first major appointment with the pulmonologist since her pneumonia in March. We will have an opportunity to see how her lungs responded to the pneumonia and if "The Vest" is making the difference we hope it is! Thanks for checking in on us. 7 June 2007Faith went to the eye doctor today. Our last visit had given us bad news that Faith's eye sight in her left eye was deteriorating. The doctor felt it was due to the Mito. It is not uncommon for Mito kids to have trouble with their eyesight. God, however, had different plans for our girl. Our visit today showed that her eyesight had improved and the doctor was able to achieve 20/20 vision with glasses on her eyes. He thought she would never be able to attain it again. We are praising God for this miracle. Our girl loves to read and write. We praise God for restoring her eyesight!!!3 June 2007The air quality has been poor this past week in the Atlanta Metro area but started to clear up yesterday. We were able to get out yesterday in the evening air!Faith is doing so well with her health right now. We have noticed an increase in her endurance in the past week. We are contributing this to the Vest doing it's job and keeping her lungs clear and the extra rest she is getting with school being over. We went to the Fernbank Natural History Museum today. Faith did ask for her wheelchair there but we believe that is because she knows walking through a museum will zap her energy quickly. As it was, we rolled her to various places where she jumped out and enjoyed the exhibit. She is doing a wonderful job of monitoring her own energy level and knowing when to stop! We are so proud of her. Faith had an PT evaluation a week ago. The results showed deficiencies in physical skills. This was not a surprise, as they are measuring things like sit-ups, push-ups, balancing on one foot, skipping, galloping etc. These are simply things Faith cannot do well. However, she did do seven situps! Aquatherapy is helping with her trunk strength. Faith can walk, run short distances and play. She has trouble keeping up with her peers but still has a great time. Faith has an OT evaluation this Tuesday. We are also going to try and get into the eye doctor to see if we can check her vision again. We will update when we know more. 29 May 2007Faith continues to do well. We think we are seeing a big difference with the help of the Vest. She is still using it twice a day for 20 minutes each time. The air quality has been awful in Georgia (due to the fires in South Georgia). The smoke has make it all the way up to the Atlanta area. We have had several days in May where we could not go outside because the air was so thick with smoke. We are finding ways to keep ourselves entertained inside! We did have a couple of days where the air was clear and we could all go to the pool. The exercise is great for all of us!18 May 2007Faith continues to do great! The school year is ending and summer begins. A summer filled with fun - friends, family, vacation, reading, and more!11 May 2007Faith is doing great right now! She had a rough three months February-April. February found her in the ER with dehydration complications from the stomach flu. March included a four day hospital stay for pneumonia. In April she was back in the ER with an extreme reaction to strep throat. So far May has been healthy and we are praying it stays that way! |
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Dr. Brown was so excited. I was beside myself with joy. We had been told that the most we could hope for was for her to remain steady and not drop anymore but instead we got a HUGE increase. The test today put her back to where her lung capacity was 3.5 years ago. It is really a miracle and there is no other word to describe it. We just praise the Lord for this wonderful answer to prayer. 
