Faith's Updates
Saturday, March 20, 2010
Wow, guess since the use of facebook I haven't been real good at updating this web site, but I figured since I actually had a few minutes to spare (a rare thing for me) that I should jump on and update it. Faith has had an amazing winter and honestly, since my last update there hasn't been too much to share. She stayed really healthy this year and was able to have an amazing meet season for gymnastics. Well, the season ended today with the Idaho State Championship and it looks like we will possibly be starting iv's this coming week. We were able to get her through this past couple of weeks with antibiotics, steroids, insulin shots, and lots of treatments. Prayerfully we will see a turn around before Monday or Tuesday and will be able to go on without iv's. That would be amazing! Other than that, things have been well with her. She is now home schooling with the boys and likes it most of the time. She is my social one (along with Dev) so it is a little harder on her. That is where gymnastics is a huge help. We are hoping to be able to find a daisy troup (girl scouts) for her soon so she can be apart of that as well. Please keep her in your prayers that she kicks this cough quickly and that she is able to come off the steroids with ease. She hates doing the insulin shots and wants to be done with them already! I will try and keep this updated better (ok, who are we really kidding) but at least you know my desire. Be blessed!
Thursday, June 11, 2009
Just wanted to give a quick update on Faith. Faith has been sick for the last few weeks (almost a month now). She did 3 rounds of steroids and numerous oral antibiotics to no avail so last Thursday we started iv's. While on the steroids she used insulin to keep her blood sugars down for the first time. As hard as that was at first, she is such a trooper and by the end of it she was taking her shots like the champ that she is. She is now off the steroids and done with the insulin, hallelujah! She has seen some improvement with her cough and they put her on a stronger inhaled steroid to help get her off the oral steroids. Within the last day or two we have discovered that there are some problems with her port. A very long process cut short is that it appears her port has either broken or there is a clot. Either way, it needs to be fixed. Her medicine does not go in very easily at all right now. Tomorrow a.m. she is going in for a dye study to show exactly what has happened. After that we will be most likely scheduling surgery for her to get a new port. We will know for sure tomorrow early afternoon. Please keep her in your prayers that nothing breaks loose before we can get it fixed. I hope you all are having a very blessed summer!
Monday, May 4, 2009
I wanted to update to let you know that Faith does not have pancreatitis. Her blood tests came back normal. They also did an upper GI last week (Monday) and that came back normal as well. It looks like her surgery is still in tact and there was no signs of reflux. This is all good news, but the abdominal pain has continued and at times worsened. We go in on May 12th (next Tuesday) for an endoscopy again. They will be checking for all kinds of things from Celiac disease (yes, again but I am not concerned about it) to ulcers and everything else. They really don't know what they are looking for, just looking for something that is not right. We are just believing that we will get answers soon so that we can stop the pain she is in. It just isn't right to have her be uncomfortable so much. Her spirits are still high and she is as strong as ever. Why would that change now? She is such a trooper and just amazes me. Anyone else I know would be full of complaints after feeling this pain for months. She did get a pretty nasty cold over the weekend and we are starting on antibiotics today. Her cough is nothing to be concerned about, so we are praying the anti's stop anything before it gets started. I thank you all for you prayers and support. This has been a trying time of adjustments for us all and we look forward to getting answers and getting her back to normal again. Be blessed!
Monday, April 20, 2009
Well, today I right this with a heavy heart as a mamma. Today Faith was given the diagnosis of having CF related diabetes. She is at the beginning stage and does not have to do insulin at this time, but her blood sugars have reached the level of being within the diabetic range. We also met with her GI dr. about all the "tummy aches" she has been having. Today she had labs drawn to test her for pancreatitis. I guess CF causes pancreatitis and pancreatitis causes diabetes. So we will know within the next 48 hours or so what her prognosis is. This would be chronic pancreatitis which I guess causes scar tissue on the pancreas until it stops functioning altogether. She is also going in on Monday for an upper GI procedure to see if her surgery that she had in September has come undone. She has been having some symptoms that it has. Please be in prayer for her that God's will would be fullfilled in this little girl's life and that the strength and patience of God would be given to me and her dad. This has been a rough day and I am asking for all the prayers you have. Please pray that God reveals all that needs to be known about what is going on in her little body and for the docs to have wisdom to find the cause of her "tummy aches" and symptoms. We are believing that each of these is going to be just an attack and that another diagnosis will not prevail! We greatly appreciate it and pray God's favor and blessing over each and everyone of you.
Friday, March 27, 2009
Well, you have to love technology and how they are always feeling the need to update software so that once you get used to how one opperates, you get a new one. Through the "upgrade" of Faith's website some content has been lost (like the last year of updates) and until I have more time to waste on it will have to stay in cyberspace. I will do my best to keep this updated, as long as I have time to get used to the new set up. Hopefully that will not take long and we can be up and running as normal.
Now, onto the reason we all come here, Faith is doing well! Since her surgery in September Faith has seen a miraculous turn. We have had no need for IV's or steroids. For maybe only the 2nd time since her surgery she is currently on antibiotics for a cough. There really isn't too much to update on the CF end of things, no news is good news! Her weight seems to be pretty steady, her health has been great, and she has made a complete recovery from her surgery. Please just be praying that this current cough will be kicked with the antibiotics. She has been on one anti over the last week, but it has done nothing so today they are switching her to a new one. We do want to keep her off steroids as the docs have told us that Faith is on her way to CFRD (CF related diabetes). When she is on steroids her blood sugars get so high (up to 400) that they say the next time we are on them she will need insulin to get her through it. So we want to avoid getting on them at all! Again, thanks for the prayers, they are always appreciated! Be blessed!
Thursday, March 27, 2008
Well, what a year this has been so far! First and most important, Faith has seen her first healing. On February 15th we found out that Faith no longer had Celiac disease. This has been an amazing blessing and miracle straight from heaven. I know the day it happened. It was actually about 2 years ago. Faith was having antoerh reaction to gluten she had eaten. I was trying to console her through the pain and dry heaves and I just cried out, "God heal her, take this pain away from her in Jesus Name." She then sat up, looked at me, and said, "Mommy, I am hungry." At the time I was floored! LOL. I knew that God had taken away the pain, but I didn't know he had taken away the celiac completely! Well, it took 2 1/2 years to confirm it, but we had a genetic test done and she DOES NOT HAVE THE GENE! Hallelujah! She has spent the last month and a half eating all the gluten she can get her hands on. She told me "If it is gluten free, I don't want it." LOL. This has been such an amazing time for the family and has really increased our faith that God is STILL a God that heals and delivers us from all our diseases! Hallelujah!
On that note, CF wise, it has been a challenging year. Faith has been on antibiotics the whole year. She was on iv's in January, and we are starting them again today. We have been through the run around with different specialists this year regarding her reflux and also an endocrinologist regarding high blood sugars. I won't go into all the details, as we are just standing against the symptoms at this time. They are just that, symptoms, and really I have a total peace that nothing more will come her way. It is just the devils way of trying to cause havoc. Luckily, he can only do that if we let him. So we aren't letting him;-) It has been an eventful year for Faith, but really not worth rehashing through it all at this point. Right now she is battling a pretty fierce cough/cold. We are doing treatments every few hours and have even thrown in some extra ones for good measure. We are currently montoring her blood sugar levels 6x a day while she is on steroids, hopefully that will end soon. They are starting to level out, so that is good. I will try and be better about updating the web site. I know I say that everytime, but this time I will make a better effort. Keep the prayers coming, as we can always feel them! Love to all of you in Cali, we will see you in June!
Monday, September 10, 2007
Well, we finally get to go home. Faith has gotten to a place where she is tolerating oral steroids so we are taking that and running. ;-) We have a few new things to monitor for a little while, but at least we are going home. Her cough is getting better, at least a lot less frequent. So we will be on iv's at home for the next week or two. Thanks for all the prayers. We are glad to be going home even if it isn't totally over yet. It is at least a step in the right direction. Have a very blessed day!
Sunday, September 9, 2007
Just a quick update. Faith is doing well. Her brothers and dad just left and we had a friend come and visit last night so that has really helped with her mood. She was feeling a bit down and sleeping a lot yesterday and today. Her dr. came in and we are going to make the switch to oral steroids tonight. We are planning on being able to go home tomorrow or Tuesday, depending on how it all goes once on the oral steroids. Her cough has shown improvement, so that is good news. Thanks so much for the prayers, please keep them coming as we make the transition off the IV steroids. We are all ready for us to be home. Have a blessed day!
Saturday, September 8, 2007
Well, we are in for another day or two. We are weaning her off the steriods very slowly. They put her back on the iv steroids 4x yesterday, so we are doing 3x today, 2x tomorrow, and back to oral steroids on Monday. That appears to be the plan. She is responding well to being back up on them, so please pray that she comes off of them this time a bit better. She is getting very swollen from them. She has gained 1.5 lbs in 4 days. This is a girl who hasn't gained weight in 6 mos. So, needless to say her chubby little cheaks are back! I will keep updating. Thanks for reading and for praying.
Friday, September 7, 2007
Just giving a very quick update that we are staying at least until tomorrow. Faith is having a bit of trouble coming off of the iv steriods so we had to bump them up again to wean her off more slowly. Just pray that she can get off of them without getting an increased cough again. Thanks so much!
Thursday, September 6, 2007
We are still inpatient today. Earliest we go home will be tomorrow. The dr. is kindof following my leading at this point and I want to make sure she is not going to have any ill effects as she starts to come off the iv steriods they have been giving her. She is still coughing quite a bit and we are continuing the treatments every 4 hours. She is staying in high spirits as long as she keeps getting her "favorite chips" (baked lays) and gets to go to the playroom. These have made our stay a bit more enjoyable each day. Faith's dr did say that her lungs are now showing signs of "mild cf" on her xray which translates there is thickening on the walls of her lungs or scar tissue from the numerous lung infections she has had. I think he thought I had heard this before, but I can't remember hearing of any "permanent" damage to her lungs. Her dr. also has had a discussion with us of another diangosis that is showing as a possibility in the future. He said it could be months, it could be years, but it appears as if she will have something else (according to past and current blood tests and patterns). He wants to follow up with more tests after we go home. Frankly, we are not accepting this and we are standing against it in prayer and fighting it. I am not even going to give it a name, but continue praying for her that NO weapon formed against her shall prosper and every word that shall rise against her in judgement will be shown to be wrong! (Is. 54:17) AMEN! I will continue to keep you all posted as she gets better. We are doing well, just tired. She gets naps, but mom has to do school work. That is ok, she is worth it! Have a very blessed weekend! Don't forget to pray for Dad too, he has all 3 boys! ;-)
Tuesday, September 4, 2007
Faith's cough became increasingly worse today. They ended up admitting her for iv's and observation for a few days. We will be home in a few days with iv's. This time the cough was a bit out of my comfort zone and I felt better being inpatient until she was showing improvement. Thanks for the continued prayers. I will try and keep everyone updated.
Monday, September 3, 2007
Hello everyone. I am jumping on real quick to update you on Faith. Faith has had quite the last month or two. After 3 hospital visits in July alone, blood tests for low potassium (which ended up being fine) the first part of August, and then a trip to Cali that ended with a cough/cold she is now back to fighting a nasty cough/cold that has worked its way through the house. She has been on antibiotics for a week now and today we started her on steroids (pray for mommy and daddy please). Her dr. has said that if there is not change in the next 2 days that we will start her on iv's this week. Please pray that her cough goes away and that the negative affects that steroids can have on her little body stay away (she can get a little moody). We are looking for healing, as this is not how we wanted to start the new school year. Faith did start pre-school last Tuesday. She is going 2 days a week and is loving it wondering why she can't go everyday (cause Mommy is not ready for that). Thanks in advance for the prayers and I will keep you posted. Have a very blessed Labor day and week!
Wednesday, August 1, 2007
Well, we are home!!!! Faith's potassium dropped a bit from yesterday, but was still well within normal. We will be following up with monitoring her levels on Friday and then again on Monday. This will confirm what they believe that dehydration caused all of this. Now we just have to focus on keeping her hydrated and cool. That is easier said then done when it is 90-100 degrees and no air conditioning. But God will make a way. He always does. The kidney specialist didn't see anything to be concerned about and all of the drs came to the conclusion that Faith became dehydrated, starting vomiting, and thus her potassium dropped. But again, we will confirm this with follow up blood tests this coming week. Thanks for all the prayers. Now, I am going to go sleep!
Monday, July 30, 2007
We met with the surgeon yesterday and for right now she will not be having the surgery. There is no damage that is being caused by her reflux at this time,so it is not something that needs to happen right away. We have more time to really pray about it and see if it is the right thing to do. Faith's potassium levels are all back to normal and she is doing better. We are staying here for now because they want to find out why her potassium is dropping so rapidly upon coming off of the iv's. The drs believe that it is her kidneys. They have called in a kidney specialist that we will be meeting with today. To be honest, I am not sure what this all means. We don't have many answers yet, just that they are going to continue to monitor her and her potassium levels for a bit. Not sure when we will be going home either. The drs here want to try and figure out what is going on before they send us home. Please pray for answers quickly. Thanks so much, I will try and keep this site updated while we are here.
To our Father's House Family: Your love and prayers were deeply felt yesterday. Thank you so much for all the phone calls, words of encouragement, and prayers that I know were happening during church yesterday and also Saturday. Even though we are miles away, they were felt! It truly moved us.You are such a blessing.
Sunday, July 29, 2007
Faith was admitted last night to Sacred Heart in Spokane for vomitting, low potassium, and a partial blockage. They are trying to get her potassium up, as of this a.m. there is no change from yesterday afternoon. After that comes up we will be doing a "clean out" with a ng tube and some meds to help get things moving out. We are also going to see about meeting with the surgeon while we are here. He is on call this weekend and we are going to try and do her surgery while inpatient now. I will update when I can. Please pray that we get all this figured out. Thanks.
Thursday, July 19, 2007
Faith is begin admitted to Kootenai Hospital. She is dehydrated and has lost 3lbs. I will keep you posted as I can. Please pray.
Wednesday, July 18, 2007
Well, we have good news and some not so good news. The good news is that for the frist time in a long time Faith got through a cold without IV's! This was at the end of May. We had done 3 weeks of antibiotics, steroids, all the norm and we were just about to go onto iv's. We went to church and they prayed over her, and well all I can say is she didn't cough again. Her cough was gone, we never had to go on iv's. WOOHOO Praise God! It was so exciting. This was the first time in over 2 years this had happened.
Well, on to the not so good news. On July 3rd we spent a day in the hospital for them to run some tests. Faith has been waking up with pain for quite sometime. She had a scope down her throat quite sometime ago that showed her larynx was bright red (causing the raspy voice we have all come to love). She also complains a lot of a sore throat and "ickies" in her throat. So with all of this we did a test called an impedience probe and a ph-probe. This test basically measures how often she is having reflux issues and if it is acidic or not. Yestereday the dr. called us and informed us that the only recommendation she could make was for Faith to have suregery to correct her reflux issues. She said that with the dose of reflux medication she was on, it really should be controled better and it isn't. We are currently trying to find a dr. to give us a second opinion as this is a very tough decision. This surgery is called a Nissen Fundoplication with the placement of a g-tube. It is a pretty painful surgery to recover from, as I understand it. It can also come with a chance of side effects. During this surgery they take the upper part of the stomach and wrap it around the lower part of the esophagus. This helps prevent food/acid/anything for that matter from refluxing up. In a lot of cases this means even any gas. So imagine if you could no longer burp or get sick when you had the flu. She could never have a soda or anything carbonated to drink either. It can cause side effects like not wanting to eat (so she would have to use the g-tube to eat), painful gas (like we have never experienced nor can imagine), and the recovery is pretty painful from what I hear. The g-tube would also be placed and she could have it for any length of time depending on how her body responds to the surgery. So this is not a decision to be made lightly. There are a lot of things that Steve and I have to consider before approving this. Although, on the other hand, she is living in a lot of discomfort right now from reflux and if not treated it can cause damage. So this is the spot we are left in. We meet with the surgeon on August 31st. We are trying to get in sooner due to some of Faith's current symptoms. She currently is pretty sick. She has lost over 2 lbs in the past week and her appetite is almost nonexistant. Today she has been throwing up and can't keep anything down. I am believing it is viral thing and will pass soon on its own. Although at this point, she isn't drinking much either and is showing signs of being dehydrated. So we are keeping a very close eye on her. Please keep her in your prayers. She really needs them right now. Also, please pray for our wisdom on how to handle the surgery issue and that we can get a second opinion. We have put a call into her previous dr to see if she will look at the test results and give us her opinion. Up here there are no other drs to consult with who would know what to look for. Her CF clinic has not delt with this very often and all the GI drs are in the same practice. It makes a second opinion very difficult to get. If we have to though, I can always look into going to Boise and getting one there. I just was hoping to not have to do that. Thanks so much for all your love and support. I will keep you posted on her progress and update again when we hear anything (I promise!) Have a blessed and safe summer!
Wednesday, March 28, 2007
I just wanted to jump on real quick and update that Faith is now off her IV's. She went 3 weeks on them this time around. We have started her on Hypertonic Saline to help thin out the mucous in her lungs. Her cough isn't completely gone yet, but we know it will be soon. Thanks for all the prayers. They helped us all make it through another battle.
Monday, March 12, 2007
WOW have I been horrible at keeping this up to date lately. I am so sorry for that. It has been a very trying time over the last month. Faith is has been sick for almost a month now and has just completed her first week of iv's. We have been doing treatments 3-4 times a day and even in the middle of the night for weeks and we still have at least a week or two left. Luckily when she does iv's now we can do it all at home and we don't have to be admitted. We put up a good fight this time around though. We were trying so hard to avoid this since it had only been 2 1/2 months since her last round. We did 3 weeks of Cipro (a very strong oral antibiotic) 2 rounds of steroids and many treatments. We even added an inhaled antibiotic called Tobi back into her regimen and also have gone back to doing atrovent (another airway opener) when necessary (meaning when she has already had her other treatments and it is to soon to do them again.) With all of this tried she just continued to get worse and we started back on iv's. She still has a nasty cough so I am not sure if we have one or two weeks left, but my guess would be 2. But we are praying for 1. With all of this going on Faith also started preschool today. She is just going 1 day a weeks (on mondays) while I am working at the kids school. She loves it and wants to go all the time, but Mommy just isn't ready for that yet. One day is a challenge for me. Faith's drs think that she has a bacteria in her lungs that stays there now. It is called pseudomonas. This wasn't good news to say the least. They believe she is "colonized" with it now. This means that it just hangs around in her lungs, lying low, never going away until she gets sick and then it acts up and makes things worse. They think this is why she is on iv's so much. We know that drs have to tell us how things are in the natural, but we know that our dr is bigger and can overcome any bacteria. Faith likes to call him "Dr. God". It's pretty cute. Although she does ask why she can't go to his office. So I tell her she does, every Sunday. She is getting so big. Please keep her in your prayers that this passes quickly. I would love to be done with iv's next week. I know she would too. Love to all and I will try and be better about updating more often.
Friday, January 19, 2006
Faith is doing wonderful. I am sorry it has been such a long time since I updated last, but things were crazy here with the holidays and such. Faith ended up being on IV's for 3 weeks. It was tough having that over Christmas, but was well worth it. She is doing so well now that we are only having to do 1 treatment at night. It has been over 18 mos. since we have done that. We had a bit of a scare regarding diabetes and sugar levels, but that all turned out just fine. Such an answer to prayer. She is a big girl now and is FINALLY out of pullups. WOOHOO! I can't believe after 12 years that I am DONE with diapers. She is now asking when she gets to start school. I told her Mommy just isn't ready for that yet. So I think we will wait another year til she is 4. She's my baby, what can I say. Anyway, not much else to say. Isn't that wonderful! I love when there isn't anything to update you all on. No news is great news here! Just keep praying. I want this girl healed, and I know our God will do it! Be blessed~
Saturday, December 9, 2006
We went to clinic on Thursday and decided we would wait one more day to see if she got better on the oral antibiotics. Needless to say, she didn't and we started her IV's late last night. She will be on the for 2 weeks and prayerfully at that time she will be better and not have to continue for another week. At this point we should be done with them just a few days before Christmas. I REALLY don't want her to have to be on them Christmas morning. That would be no fun for anyone. Her lungs are currently have a crackle sound to them and she has lost over a 1/2 a lb in the last month. Please keep her in your prayers that she makes a quick recovery and that the weight loss was an isolated thing. Thanks so much for all your love and support and for the great encouraging emails. They really are such a blessing!
Monday, December 4, 2006
Faith is pretty sick. We really could use some prayers right now. This one hit hard and fast. Saturday she was fine, Sunday she was coughing horribly. She is very congested and coughing a lot. First, sorry if some of this doesn't make sense, I am quite sleep deprived right now. They put Faith on 2 antibiotics (Cipro and Tobi) and then also on a mucus thinner (pulmozyme) and a steroid. They are pretty much throwing everything they can at her to keep her out of the hospital. We are also doing treatments and her vest every 4 hours around the clock. Thus the reason this mommy is wiped out! It seems as though as soon as we are done with one set of treatments it is time for another. I will keep you posted. Thanks in advance for the prayers. We are scheduled to go to the dr. on Thursday if not sooner.
Monday, November 27, 2006
Can you believe she is 3!!!??? I can't. How time has flown by. It seems like it was just yesterday that we brought her home from the hospital, yet it seems like it the last 1 and 1/2 has lasted for 3 years. Things are going well for Faith. She is doing wonderfully here and hasn't had any respirtory issues since being here for the most part. Little hurdles, but nothing major. We did go see an ENT (ear nose throat dr) a few weeks ago. It turns out that Faith's reflux is a lot worse then we had thought. Her meds aren't controlling it well at all. Her larynx was very red and swollen and she has chronic larengitus (spelling?) from it. That is why she has a hoarse sounding voice all the time. We are going to have to pray through this one cause she is already on a very strong dose of reflux meds and an option may be surgery, but it is a HUGE surgery and at this point I don't have peace about it. The long term effects of reflux that isn't controlled though, isn't plesent either. So we will just be lead by God on our next step. We are meeting with the cf dr. next week and I will be discussing our options at that point. I am sure there would be more tests before anything is decided. Other than that, she doing well and all is great. Thanks for checking up on her. By the way, you can leave a message now in her guest book. It is up and running again. You can leave one for anyone in the family. Love to all!
Monday, October 30, 2006
Well, we met Faith's new dr. here in Spokane and it went really well. We spent hours going over her full history, so you can imagine how fun that was. He has agreed to treat her aggressively and is going to continue to see her on a monthly basis until it is not necessary. Which hopefully for us will be soon. Her referred her to an ENT due to her hoarseness. He just wanted to make sure that it is just a side effect of her meds and not anything else, so we go to that dr. on the 14th. We had to change her to 3 treatments a day to keep her cough quiet. We believe that it is just her asthma acting up as she adjusts to the cold weather here. She has gotten one cold since being here, but with quick action and the grace of God it only took a dose of antibiotics to kick it. Other than that, she is doing great and still just as happy and joyful as ever. Please continue to keep her in your prayers as the cold hits us here and she continues to adjust.
Tuesday, September 19, 2006
Not too much to say today. Faith is doing pretty well. She has a little bit of a nagging cough since moving up here. Not sure if it was all the fires that we had going on or just adjusting. We go to the dr. the first week of October to meet her new doctors and will find out then. The dr. and hopital are about 30 min. away, so not much of a change from San Diego. We found a pharmacy that is only 5 min. away from our house that carries all of her meds. So that is a major blessing especially during the winter time. She did great on the trip up and was an absolute angel. All in all, she is loving it here and doing well.
Monday, August 28, 2006
Well, I made it through. Our stuff is on its way to Idaho and our house is empty. It has been an amazingly busy few weeks, and now we have till Friday for some down time. As for Faith she is doing well. Her cough is gone as long as week keep up on the 2 treatments a day. Her lungs are still healing so we will continue that for a little while. She is finished with her IV's and ready to move to Idaho. We have appts. set up for the first week of October with her new GI and CF dr. We have ordered all of her medical records to be sent to them already so the transition should be pretty smooth.
Since we are moving I am going to make a page on this website that will have family updates and family pictures. This will help all of those that we miss here in California keep up with all that is giong on with us. So once we get settled in Idaho I will add that. We did find a house and it was SUCH a God thing. It was truly a blessing. It is a brand new home in Post Falls, ID and is in a golf course community. Steve is VERY excited about that. Please keep our family in your prayers that everyone stays healthy and that we have a safe trip. We leave Friday after dinner and will be driving all night and arriving in Idaho Saturday around dinner time. Be blessed!
Wednesday, August 8, 2006
Thursday, July 13, 2006
There is so much to share. Our trip went great! It was so amazing to sit and talk with a man with as much knowledge of CF as Dr. Warwick has. He is a gem to the CF community. Anyway, first and foremost upon assesment of Faith he found that she had a large liver. What this means, we aren't completely sure yet. But her GI dr. here has been very cooperative in ordering tests. We already went in for blood tests and they showed her liver is functioning normally. So that is GREAT news. We are scheduled to go in for a liver ultra sound at the end of the month. That will show us if there is anything going on with her liver at all. There were 2 things that could be causing this large liver. One, of course, would be her liver having something going on. The 2nd is that her lungs could have something going on and be pushing her liver down. Neither one is good, so we are praying and believing for a miralce that nothing is found and upon further testing find her liver is normal. Today I am trying to get in contact with her CF dr. to see if they want to do anything to follow up on this right now. So right now it is just a waiting game. We are in the process of getting her a new vest. Her current vest causes her pain when she uses it and she fights me on it. Also Dr. Warwick has a new vest that he just created that works in a different way and is supposed to help thin the mucus in her lungs out along with clear it from her lungs. So we are praying her insurance will pay the $12,900 for her new vest. We should know within a few weeks. Her cough is doing well, we are currently doing an experiment with one of her meds to see if it truly is helping her, or not. Under the advise of Dr. Wawick we are doing 2 weeks on, 2 weeks off of Pulmozyme and monitoring her respitory rate at night while she is asleep. We will do this 5x and at the end of it take the information to our drs. to see if it is helping her or not. This particular med does not help all patients. Sometimes it can help, sometimes it can hinder, and in a lot it does nothing. So with this info we are seeing what it does for Faith. After going over Faith's treatment that her dr.s have given her with Dr. Warwick he said that we had a great team of doctors. I couldn't have been more pleased to hear this. It was such a relief to know that we have some of the best working with us. He said there isn't much that he would change. We are going to try her on a new med called Mucomyst. Dr. Warwick uses this on all of his patients and has forever. It helps with inflammation, with thinning the mucus through using saline mist, and also is an anti-oxidant. So it is very beneficial. I am hoping to get that perscription and start that at our next clinic visit in August. Thanks for reading this far and for all the prayers. Faith is doing well, and only our prayers are keeping her that way. We finally went beyond 3 months of being out of the hospital. The first time in a year!!! She also has been infection free for the last 6 months on her cultures. WOOHOO. All our hard work and prayers are starting to pay off. Be blessed!!!
Monday, June 12, 2006
WOW! I can't believe it has been a whole month since my last update. I guess you could say no news is good news. This last month has gone really well. As long as we kept up on treatments the cough that Faith had was pretty much gone. She was doing very well until about 2 weeks ago when she started coughing again. Currently she has a cough that is pretty junky sounding and she is on Augmentin for it. All of her cultures have been clear and she is on an inhaled antibiotic also so her dr isn't thinking that it is anything too serious. We are just praying that is clears up this week so she doesn't have to be put on anything stronger for it. We have to call on Thursday if it isn't any better. She has gone through a couple of tests in the last month. She had a sinus ct scan done which showed some minor thickening in one, but I guess that isn't anything to really worry about. Just something to keep an eye on, and pray it goes away. She had allergy testing done at the end of May and we finally can eliminate that as a cause of her cough as she isn't allergic to anything. So that is good news. Today she went in for a delayed gastric emptying study. In my eyes it showed everything to be working properly (you watch it on a computer while the test is going on). So I really don't expect to hear any differently. We have done this one before and it really stinks to do though. Imagine being 2 1/2 years old and strapped to a table so you can't move at all with an x-ray type machine about 1-2" above your face for 90 min. That's what I call fun! ;-) Faith actually did amazing and didn't even really cry at all. Although she did manage to move herself and I still don't know how she did that. So we will see if they still can read the results of it still. We are still waiting on the ph probe test to get approved by her insurance. We had to reapply for her insurance this month and the paper work has taken awhile so it has caused a delay. This will be a test to see if she has reflux and if so how bad it is. With this one she will have to have a little probe that she wears for a full 24 hours. Again, it should be lots of fun. Needless to say I think we will be staying home during that time, a nice day off. I think that about does it. Summer is here the boys are out of school and I am praying we break our 3 month cycle of hospital visits that we seemed to have had over the last year. I am determined to break it! When we make it through the next month we will have broken it! We have clinic again on the 29th and then we go to Minneapolis on the 7th of July. It should be a fun and prayerfully a noneventful summer. Thanks for taking the time to stay updated on Faith. Keep the prayers coming as they are always needed until we find a cure or she is healed. I pray you are all as blessed as we are!
Friday, May 12, 2006
Sorry it has been so long since the last update. Things have been crazy busy here lately. Faith is doing well. We are done with the antibiotics and her cold is gone. We made it through with lots of prayer. Well, we have made an appt. with a well known CF dr. in Minneapolis. He has a great approach to dealing with CF and his efforts have paid off with an average life span of 48 years old verses the national average of 36. 12 years is a long time if you ask me! 12 years ago I was 17 and just about to graduate high school. I have lived a lot of life in the last 12 years. ;-) Her appt. is July 7th and we (my mom is going with me) will be gone for just about 24 hours total. Very quick trip (unless we get side tracked by the Mall of America!) We are very excited about going and getting a 2nd opinion on all that has gone on this last year. We love Faith's current doctors, but Faith has been quite the challenge to them and I feel that another opionion will be helpful in finding some treatments that will rid her of her cough. Her cough still lingers, and is still junky, but we are still believing it will leave at some point. She is going back in for some tests that she has had before, and some new ones, in the coming future. On Thursday she will be having another CT scan of her sinuses and hopefully her lungs. We go to clinic on Tuesday and I will be asking them to do a bronchoscopy on her too. This will help us get a better feel for what is going on in the lower part of her lungs and allow to get a better more accurate culture. She will also be going in for a gastric emptying study which will show how quickly her stomach moves the food out. This is just a follow up to her Celiac diagnosis a year ago. The other test she is having done is a ph probe that will show if her cough is related to reflux at all. It will be the answer to at least one possibility. This is pretty much the full update for now. Please just pray that all of these tests go smoothly and are easy for Faith. Thanks and be blessed.
Tuesday, April 25, 2006
Back from the clinic. They ordered another CT scan of her sinuses, put her on another antibiotic for 14 days, and we have to call if no improvement in a week. If no improvement we might have to go back to the iv's. Also ordered allergy testing for the end of May to see if that is the reasoning behind all of this. (her brother is allergic to A LOT, all 40 things they tested him for) Took her off the reglan, since that didn't change the cough. Put her back on Nasonex and she wants me to start flushing her sinuses with saline solution as often as she will tolerate it. I think that is about it. We go back in 3 weeks hopefully not before. Please pray this oral antibiotic works. They also cultured her again. So we are waiting for that too. Thanks for all the thoughts and prayers. I will keep you posted as we go through this.
Monday, April 24, 2006
Hello just updating to let you know that Faith's cough is back and she has another cold. Her "good" days lasted about a week this time. She started coughing that junky cough again at the beginning of last week. We were in clinic last Thursday and we were put on 2 different treatments 3x a day again. She got congested on top of the cough over the weekend, so tomorrow we are back to clinic again. Who knows what they are going to say or have us try, but please keep her in your prayers that this cold passes quickly and doesn't end us back in the hospital again. It has just been WAY to soon to even be on this road again. Thanks in advance for the prayers. I will update when I can after clinic tomorrow.
Monday, April 17, 2006
Sorry for the wait. Things have been busy around here with the Easter holiday. Well, I truly believe that we saw a miracle on Thursday when we went into the dr. When we got there and took off the dressing that had been put over her port site we were suprised to see that there was nothing there. There was no more drainage, or any sign of infection. Her site was not swollen or red, no fluid around the area and nothing coming from it. It was a FAR cry from what I had seen the day before. OUR PRAYERS WORKED! Thank You, Thank You, Thank You! It was so nice to get some good news. On top of that, Faith's cough has been better in the last week. I mean A LOT better. She was taken off one of her meds, and another one is on a lower dose. We are very excited. The dr. said that if she continues like this that at our next visit she would take even more away! WOOHOO! So this last visit was a wealth of good news and again thanks to all of those who pray for her. We are seeing them answered!
Wednesday, April 12, 2006
We need prayer! Faith's port site has the staph back again but that doesn't seem to be the big problem. She is skipping the last 3 doses of her antibiotics. They home nurse came today and when she went to change her bandage there was brown "stuff" draining on her port. At first we thought it was from the surgery site, but after taking the steristrips off, we realized it was coming from the place her port is. It was coming from the spot that her needle was put into her port. So this is lovely. We were already going to clinic tomorrow, so they are going to culture her port now and the rash to see if the rash truly is staph and what is causing the drainage and we will go from there. For now she just has a bandage over the site and isn't accessed any longer. We don't get to finish all her meds, and we are just praying that she doesn't have an infection inside her body where the port is, although the nurse said that is what it looks like. We have to watch real careful for any fever and if she gets one we have to take her right away to ER. So that is our fun for the day. Please pray this isn't anything major. Cause Mama's getting tired and I am sure Faith is too. Thanks.
Wednesday, April 5, 2006
WE'RE HOME! Everything went well, and Faith has her port in now. It was harder than I thought it would be to see her with this foreign thing in her. But we are holding strong and glad to be home. She will be on antibiotics through her port for the next week or two. Her cough is still there, and sounding icky but at least she can make it through the night without any treatments now. She did well after her surgery with the help of a little morphine. Boy, was she feeling good at that point. At least she slept well. We go back to clinic a week from tomorrow, and I will update then. Thanks again for all the prayers.
Tuesday, April 4, 2006
We found out late yesterday that Faith is scheduled for surgery to get her port in at 5pm tonight. This will take about an hour and we will be here tonight, and then hopefully if all goes well we will be able to go home tomorrow. Today has been a rough day already seeing as Faith can't walk due to an IV in her foot, and she can't eat since she is having to go under later today. Thanks for the continued prayers. I will keep updating as I have time to.
Monday, April 3, 2006
We were expecting to come home today, and then we learned that Faith's midline went bad. It has started to leak at the point of incersion. At this point in time we are still waiting to see how it all plays out. They are waiting to hear from the surgeon to find out if she has anytime soon that she would be able to put Faith's port in. If she does than they will put in a regular IV until she can go in for the surgery. IF the surgeon doesn't have the time to do within the next week or so then we are back to square one. The only options at that point are having Faith go back under general and with the help of radiology trying to save her current midline OR staying here for the next 10 days to give all of her meds through a regular IV. Needless to say, with these options, we are praying the surgeon can fit her in SOON! We were very ready to be going home, and not very happy that we now have to stay, and don't know for how long. Please keep this situation in your prayers, and pray that Faith has favor with the drs. and that the right decision is made. Thanks and I will keep you updated.
Sunday, April 2, 2006
We met with the dr. yesterday and were told that Faith's x-ray showed a small section of her right lower lung as collapsed. She said it was most likely caused by a mucous plug and would correct itself. Her cultures are still pending. It will be a few days before we hear on those. Faith will be going in for a surgery with inthe next few weeks to get a port placed. Her drs. feel this is necessary for any further IV treatments that may be necessary. They can't do anymore picc lines or midlines on her. So we will meet with the surgeon over the next week or so after she is out. She is responding very wel to her treatments and she finally made it through last night without needing a treatment. As longs as we go tonight the same way, it looks as though we will be heading home tomorrow. Faith is being a little ball of energy cooped up in a hospital room, so it would be best for us both if we were able to go home soon! Thanks for all the prayers and I will update again when I can.
Saturday, April 1, 2006
Just updating from the hospital to let you know how Faith is doing. On Friday she got a midline in. They tried to do a PICC line which goes into a main artery right above the heart, but her little viens wouldn't cooperate. So they could only go 1/2 way and ended up in a smaller vien in the middle of her upper arm. Due to it being a smaller vien, there are increased risks that come with it that the line may not last as long. So please pray that it lasts the full 2 weeks that we need it to. Other wise, we would have to come in for a permanent port. They are saying that next time they are going to have to put one of those in anyway, cause her veins just don't like PICC lines. Other than that, she is still coughing a lot. Still has had to have middle of the night treatments, and we just really want to start seeing some improvement. Please continue to keep her in your prayers. Thanks. I will try and update again in a few days.
Thursday, March 30, 2006
I am letting you all know that Faith is being admitted again today to the hospital. We went to the dr. today because her cough was really bad last night, almost to the point of taking her to ER. When we got in there the dr. said her lung sounded worse than in the past and that she could hear something in there. She said she might have some pneumonia or some type of infection brewing since she sounded worse than she did last week. We are going in for about a week and she is going to be getting the PICC line again and going through 2 weeks of antibiotics again. Please pray that her PICC line goes easily and that she has a speedy recovery. We don't want to be in long! Thanks for all the prayers.
Sunday, March 26, 2006
Sorry it has been so long since I updated. We had clinic on Thursday, so I was waiting until after that appointment to update you all. Almost 2 weeks ago Faith got a cough/cold and has been battling it since. What seemed to have run its course in about 3-4 days with her brothers is still lingering on for her. She went through a run of antibiotics last weekend, and they didn't seem to help too much. So now we are just watching it and praying that it goes away soon. It still sounds really junky but we are just going to keep praying. As for Thursday the dr. made some changes to her medicine and is starting to see if maybe her cough is caused by some GI issues like reflux. Her lungs were clear, which is awesome! So we are on 2 new meds for reflux issues but they took 2 away, so it all evens out. We are continuing to do 2-3 treatments a day. She is completely off her steroids now. Not sure if that is why her cough is lingering or not. She is also starting to loose some of the weight that she gained from the steroids, so that is good as long as she doesn't loose too much. But for now, really all is well and we are all in good spirits. She is still her happy little self as always and runs around singing her ABC's and "Praise be the Lord" most of the day. If we could all keep a song in our hearts the way she does the world would be a different place. Love to you all and thanks for all the prayers and support.
Friday, March 3, 2006
Well this week we got some good news finally! Faith's culture came back and there was no infection! PRAISE GOD! We are very pleased that this time around with prayer and the right meds that it is gone. We are still in the process of weaning her off her the oral steroid. We are taking it slow. She is now taking the inhaled steroid 3x a day to keep her cough in check. Her cough is kept under control for the most part as long as we stay on top of her treatments. We do 2 in the morning, 2 in the afternoon, and 3 at night. It is a lot, but well worth it. We are still praying that soon we are able to get her off some of these. They still don't really know the reason for the cough, just trying to keep it in check and under control. I guess once we get through this steroid thing I will go back to pushing for some answers if they have any to give. Or at least keep trying to find some answers. Thanks for the prayers and continued support from all of you. You are all awesome! Have a great weekend!
Friday, February 24, 2006
Today Faith is doing well. Her cough seems to have taperred a bit and is sounding better. At the end of last week Faith's cough wasn't sounding so good again, and we had to up her treatments to every 4 hours and we started her on another antibiotic. She is now sleeping better through the night and doesn't seem to be working as hard to breathe. Today we had her at only 3 treatments during the day and she did really well on that. So tomorrow we are going to try only 2 and see how it goes. She is still on an oral steriod, and we will start to wean her off of that tomorrow. Pray this goes well, as sometimes taking them off of the steroid can cause the cough to get worse again or a "flareup" of symptoms. Her weight is doing VERY well. I weighed her today and she weighs a whopping 26 1/2 lbs. That is 2 lbs in a month that she had gained. She eats all day long. I have trouble keeping up with her. ;-) I found out that a side effect of the oral steroids is an increase in appetite. Boy, you can say that again. But we will take it any way we can get it! Please pray that her cough continues to get better. It is starting to feel like we are on the right track again! Thanks for your continued support and PLEASE watch our video clip on the her home page. It really is special!
Friday, February 10, 2006
Well I apologize for not updating sooner. We have been so busy with the move and just trying to get life back to some type of normal. Faith got her PICC line out on the 1st. We had been having some issues with the bandage staying on, so they stopped her IV's and took it out. We went to the dr. on Thursday the 2nd, and they decided to just give Faith a break from the antibiotics for a little while since all that they had her on didn't seem to get rid of her cough. We will have her cultured again when we go back on March 2nd to see if her lung infection is gone. We are praying and believing it will be. She just continues to do her normal maintanence meds now. This is still a lot of work, but it definitely a nice break from what has been the past few weeks. Faith got a tummy bug on Tuesday and was sick all day long. Luckily it only lasted that one day, and she is doing much better now. The poor girl has had such a hard month or so. We did get Faith's insurance all in place, although we did find out that we have to pay about $2,100 for it now, and then another $2,100 for it in May. We are currently applying for help with that with some of the non-profit organizations that helps families with medical costs. So should we get those funds it will take care of about $1,000 of it. So that will be such a blessing. We are starting to work on our fundraising for the annual Great Strides walk. Keep an eye open for your letter! We are praying this will be a record breaking year for Team Fight For Faith!
Wednesday, January 25, 2006
As of last week we found out that Faith no longer had any insurance, and that she hadn't since November. This was while we were still in the hospital. Then at clinic yesterday they decided to put off the tests and keep her on the iv's for another week, but that they wanted to change one of her antibiotics to a different one. Well, you have to have the first dose at the hospital infusion center. Well, since we had no insurance they wouldn't treat her. On top of this Faith's arm is all infected and gross under her picc bandage so I am waiting for the nurse to come by and change it. She has blisters all under it. So today when this happened they didn't want to come see her for her infected arm for the same reason, no insurance. Plus I only had 1 day left on some of her meds that were going to cost us over $5000 to get. They wanted us to pay cash for all her iv stuff, or be admitted again for another week to get by the insurance thing until she was approved. This was what I had to deal with yesterday and today. Then breakthrough happened. Thank You Jesus! All I could do was pray. I didn't have $5000. My daughter had to have her breathing treatments and meds. She had to start her iv meds to kick this infection and Steve leaves on Saturday for a week and 1/2 so we couldn't go back to the hospital. So still, I prayed. Within a few minutes of praying I called her pharmacy, was given the name of the CCS supervisor (state insurance company) called her and she actually ANSWERED! She had the financial supervisor there at her desk with her and also had Faith's file. They approved it on the spot and gave me the authorization # to give to everyone to get all the things done that needed to be done. PLUS they back dated it to cover everything since November! Faith's nurse is coming out now for her arm, we pick up all her meds tomorrow, and she gets her first infusion of her new iv med tomorrow. All in God's timing, which is always perfect. He never fails us in our time of need if we just ask and believe. It truely was amazing to watch how it happened, and how fast. They told me yesterday it was going to be 4 days before I heard anything. The supervisor was just walking out the door to leave for Sacramento for 2 days when I called. When she gave me the news of it being approved, all I could do was cry. I just couldn't help it. God is awesome!
Thursday, January 19, 2006
Monday, January 16, 2006
Tuesday, January 10, 2006
Just letting you all know that Faith had a great Christmas. She is doing well. We hope all of you had a blessed Christmas as well, and have a happy and safe New Year.
Friday, December 16, 2005
Well, we ended up going into clinic this last Tuesday for Faith's cold. She is doing better now. Her cough is back to being dry (answer to prayer) and her cold is gone (another answer to prayer). Her dr.s were concerned though with her weight and her cough. According to them we just need to "fine tune" her treatments. Her weight seems to have hit a plateau. This isn't horrible, but not something they want to continue. What that means is that she is starting on a new nutritional supplement fruit juice drink, and mommy has to find more time (ha ha ha) to stay at home and cook. As for her cough they have added back the Atrovent inhaled medicine that she used to be on. We just throw it in with another one of her breathing treatments and do it in the morning and at night. It adds about another 10 min. per treatment, which isn't too bad. Other than that she is doing great. Always smiling and taking this all in stride. God has really graced her to go through all that she does. She is such an amazing little girl. Thanks for staying updated and reading this. Your prayers are continuing to work! We pray you all have a safe and blessed Chirstmas season.
Saturday, December 10, 2005
Today Faith's cough has gotten worse. It is sounding "junky" now. So please keep her in your prayers that this passes quickly. Thanks.
Friday, December 9, 2005
I just wanted to update you all and let you know that her test results all came back normal. They ran the CT scan and also some other tests to try and find out if the back pain was possibly related to an infection, it wasn't and they found nothing. PRAISE GOD! We are just continuing on our normal road now. She has been fighting a cold for a little over a week and we are ready for that to be gone. I am sure it is almost done running its course and will be gone soon. Other than that, she is in good spirits most of the time. Her pain has gotten better in her back. She is still coughing a bit, but we are just believing that will be gone soon too. Thanks for checking in on her. Our next appointment is on Dec. 29th, so hopefully we can make it till than with no other dr.s appts. That would be a GREAT Christmas present. Hope you all have a great and blessed Christmas.
Monday, November 28, 2005
Just updating to let you know that Faith is going in for her CT scan tomorrow afternoon. Her appt. is at 1 p.m. She does have to be put under general for it, and she has had some recent breathing issues. Please keep her in your prayers as she goes through this tomorrow. We are back on the TOBI now. We were in the dr.s about a week or so ago because she was having a lot of difficulty breathing. They don't know what is causing it, so they put her back on the TOBI antibiotic to be safe. She is having some type of pain in her back too, that they don't know what it is from and she wakes up almost every hour through out the night crying. Please just continue to pray for her that they find out what is causing all of these symptoms and we can correct it. She is still coughing too. Who knows anymore, we are just trusting God that it will all be ok. Thanks for reading and I will update again when I get the results of her CT scan.
Monday, November 14, 2005
Well, I just got off the phone with her CF clinic and her culture was CLEAR!!! Thank you Jesus, and thank you to all of you who prayed that her lung infection would be gone! IT WORKED!!! Now we just have to get rid of this cough! We are trying to get her CT scan done on Monday the 21st, but don't have it definitely scheduled yet. Hopefully this will all be over soon. Thanks again.
Tuesday, November 8, 2005
Well it went pretty good. She weighed 24lbs which is ok. Up from where she was, so it is a plus. Anyway-they are letting her finish out her antibiotics, and then over the next 2 weeks we are going to have a sinus ct scan done. They have to put her under general for it. They are wanting to see if this is causing her cough before throwing anymore antibiotics her way. She has been on SOO many of them lately, and since none have seemed to do the trick completely, they are looking for other sources. They also referred us again to see the GI dr. They want them to look into her reflux issues more and see if maybe THIS is the cause for the cough. Then we will go and reevaluate after we do those things. Her gi appt is on the 9th of Dec. Hopefully she will get her ct scan done on the 21st. We go back on the 22nd to CF clinic and see what they have to say about things then. They are also doing some type of blood test to test for the aspergillus to see if she has it and they did a throat culture to see if the infection is gone. (PRAYING IT IS) That is about it. I am happy with the steps that we are taking. I think it will give us some better answers than just throwing more antibiotics at her. Just glad we aren't headed back to the hospital. Anyway, I hope all is well with all of you. Thanks for reading and staying updated.
Friday, November 4, 2005
Well, yesterday Faith was put on another oral antibiotic. Her cough is still not gone, and although it sounds better, is still hanging around. We are on this one for a 10 day course and are PRAYING this works. IF her cough is still there we MAY have to go back and have her PICC line put back in and start yet ANOTHER round of iv antibiotics. WE DON'T WANT THIS! So please pray with us that these oral anti's do their job! We also found out that we have a toxic mold growing in our home (especially in Faith's room and the Master bedroom). There were very high levels in the air. So we are moving out of our house and selling it. We are planning to get Faith out of there ASAP! The type of mold that is there is very similar to Pseudomonas (in how it attacks CF lungs). It works the same way, kindof. So we have to get her out of it and we just don't have it in us to go through another remodel and/or fix it. This may explain why she is still coughing though, and this being exposed might be the answer we have been looking for. We are going to clinic on Tues (the 8th) and we will talk with the dr.s then about Faith and what steps should be taken next if her cough has not shown any improvement. We were told by that time she should be improving from the oral anti's she is on. We are believing she will be. She will also get her follow up culture done at that time and we will find out about a week from then (the 14th) whether or not the infection in her lungs is gone. Thanks for staying updated, and again for all of your love and support.
Monday, October 24, 2005
Well we are done with all of her antibiotics, including her TOBI. WOOHOO! We went to get her follow up done today. Her lungs are clear, she hasn't coughed at all today and they take her PICC line out tomorrow. We are SOOO excited that life is going to get back to normal starting tomorrow. She also is going back to just 2-3 breathing treatments a day. So we are back to just maintaining the normal routine now. Thank You Jesus! Faith and mommy are looking forward to a good nights sleep where we don't have to being doing meds at 11 pm and 7 am. That really makes it hard to get a good nights sleep. Thanks again for all the prayers and support. We go in on the 8th of November for her follow up culture and we are going to continue to pray that it comes out clean. Until then.
Wednesday, October 19, 2005
WE ARE HOME!!!! Thank you Jesus! That was the longest 10 days I have ever lived, besides the first 10 days after she was born. I am gald to report that all of her tests in the end came back normal. We still don't know why she is having such pain in her hip when she lays down on her back, but we will be following up with an orthropedic surgeon within the next few weeks if it persists. Her cough is doing SOO much better and even though it is still junky sounding, is not being heard very often. Her lungs are clear, and she is breathing well. We are still to do our 4 breathing and vest treatments a day until her cough is completely gone, and she will finish out her IV meds here at home. The nurse is coming today to teach me how to mix them and give them to her until Sunday night. We are both just so very happy to be home, and can't thank you enough for all of your prayers. That is what finally got her home. They wanted to keep her until Sunday, but after reconsidering that she could get sick again because of staying there, they let her go home. You all have been such a blessing to us. Thanks to all of you who came to see us, who brought dinners over, sent emails, called, and prayed. Your support was what got us all through this tough time. You are all awesome!
Monday, October 17, 2005
Sorry for the delay in updates. There was no access to computers at the hospital over the weekend. We had hoped to be home by now but some new obsticals popped up over the weekend. On Saturday, though she had a slight improvement in her cough, she developed a pain in her left hip. We still don't know why but the dr.'s will be running more tests today. Then on Sunday night she developed a 101.4 fever and her cough regressed. She is still not feeling well or acting like herself. They are running more tests and hoping she has a virus. They are also running tests on her sinuses to see if maybe that is why she is not showing improvement. As of right now there is NO talk of going home. Please keep all of us in your prayers as we would like to be going home soon. Thanks again and we will update this site as ofter as we can.
Friday, October 14, 2005
This morning the dr. decided that due to Faith not responding very well to the antibiotics she was on, and her strange blood levels on those antis that she is going to switch them. She will be starting on a new one today. This one she will be able to get a full dose on, and they won't have to worry about it becoming toxic to her. Her oxygen levels were down yesterday, but seem to be a little bit better today. We will just wait and see what today holds, and I will update later after I talk to her doctor. Thanks again.
Thursday, October 13, 2005
Yesterday we were made aware that Faith was given a med that she wasn't supposed to have. They had to test her to see if it caused any kidney damage (not liver, sorry). Luckily by the grace of God it didn't. She is in high spirits, but laying low today. Her oxygen levels have dropped off a bit today, and she seems to be coughing more. They are wondering why she isn't getting better yet, and are hoping that by tomorrow they start to see some improvement. They are going to test her medicine levels one more time today (my poor little human pin cushion). You should see her little arms, they are SOO black and blue. But, they really don't want to have to keep her antibiotic at a slower rate unless it is absolutely necessary. They are trying so hard to get rid of her lung infection. Her cough is being a little more persistant today. Please pray that we start to see impovement soon! I guess it is her lower lobes of her lungs that are the worst. As of right now, we might be home by the end of the weekend and finish out the 2 week IV meds at home. Again, thanks for the prayers and please keep them coming.
Wednesday, October 12, 2005
Well I apologize for not upating yesterday. The past 36 hours have been tough. On Monday night Faith had her PICC line put in and it took them over 2 hours and 10 tries to get it done. Thank God she was under general when they did it. Then yesterday her medicine levels were too high in her blood so they had to wake her to draw her blood twice last night and they are still too high. They are now seeing how they can change her meds around so that there is no damage caused to her body. On top of all of this they are now going to possibly run some tests on her liver because they have some reason to be concerned about how it is working. Her congestion and cough were worse yesterday, and not much change today. We are still waiting to here from her dr. today and go over some stuff. I will update again if I get time. Thanks again for all the prayers, please keep them coming they are much needed.
Monday, October 10, 2005
Sunday, October 9, 2005
Well, Faith's cough got a lot worse today so I called her dr. and they are admitting her to the hospital. You could feel the rattle in her lungs when you touched her back. We will be going through a 2 week course of IV antibiotics. I hope that we will be home in 1 week with the iv's. Please pray that this infection clears soon, and so does her cough. I will update the site as I can from the hospital on her condition.
Saturday, October 8, 2005
Great News!!! I spoke with Faith's dr. yesterday evening because Faith has a junky cough still that is being persistant. She said that she wants to take Faith off some of her meds because she was basically on everything they could throw at her. She took her off her xopenex and atrovent. This means that we are down to only 3 breathing treatments a day. WOOHOO! So pray that she does well off of them so that they can stay gone! She did put her on another antibiotic called Cipro for 10 days. She believes that her cough is from the lung infection and wants to fight it with 2 antibiotics (including TOBI). If she still has the cough in 4-5 days then we may have to try IV anti's in the hospital. So please pray that we don't have to go down that road and that her cough leaves quickly. Devan's birthday is this weekend and that would just devastate him if Faith and I weren't here for it. Thanks again for all the prayers and support. You guys are awesome!
Tuesday, September 20, 2005
FYI---Here is what Pseudomonas is:
The most common bacterium to infect the CF lung is Pseudomonas aeruginosa, a gram-negative microorganism with a propensity to live in warm, wet environments. The lungs of most children with CF become colonized (inhabited long-term) by P. aeruginosa before their 10th birthday. The body's response to P. aeruginosa includes inflammation, which causes repeated exacerbations or episodes of intense breathing problems. Although antibiotics can decrease the frequency and duration of these attacks, the bacterium establishes a permanent residence and can never be completely eliminated from the lungs.
The treatments for P. aeruginosa lung disease typically involve antibiotics, bronchiodialators, anti-inflammatory drugs, and chest physiotherapy to help fight infection and clear the lung passages. While a variety of antibiotics have been used to treat this bacterium in people with CF, improvements in drug delivery systems (such as inhalation) and more effective antibiotics could potentially improve lung function further.
Friday, September 16, 2005
Well we went in yesterday for Faith's breathing/coughing that is going on. She said it doesn't sound like a CF flare up but that it is asthma. We are on 2 more meds now, prelone and advair. Then she also is up to xopenex 3x a day (a nebulized treatment). So now we are on xopenex, vest for 20 min 2x a day, flovent 110, singulair, erythromycin, atrovent, prelone, and nasonex for her breathing issues/asthma. UGH! This is getting old and she is only 22 mos. old. That list DOESN'T include the meds for her CF and reflux (another 3). They also did a culture. I am sure it will come back fine. But please pray that it does. She is already starting to fight me on the 2 (now 3) we have to do for the xopenex. She is hitting 2 with a vengeance attitude and all. Hope you all had a great day, and a blessed weekend.
Monday, September 12, 2005
I just had to share that Faith's newest thing is to walk around the house (sometimes holding a microphone) and sing Hallelujah. I found it very interesting the meaning of the word was "Praise the Lord" it also says "Hallelujah" is considered the most joyful word of praise to God. As a mom to a little girl that has been through SOO much in her short little life, I think it is wonderful that this is what she is doing as "fun". I love this age!!!
Thursday, September 01, 2005
Well, today we have A LOT to update you on. Faith had a HUGE day today. But first I will update you on how clinic went on Tuesday. Faith was up on her weight and height. She is a whopping 23.8lbs now and 31.25" tall. Her lungs were clear, although she is sounding very horse and a bit stuffy. They are thinking that this may be the cause of allergies so they put her on Rhino court Aqua nose spray, and will do allergy testing once she turns 2 in November. Faith also got her vest a few weeks ago. She loves it and does so well on it. She does the vest for 20 min sessions 2x a day. We do it at the same time we do her breathing treatments. It is working well right now. Her dr.s were very impressed at how long she does the vest for. NOW, for today's happenings. I will have to give a little back ground info. Steve works for a company that builds performance custom boats (Ultra Custom Boats). Ever since Faith was born, they have done SOOOO much in helping us raise awareness and $for CF. Well, they have a new reality TV show that is coming out in November. Kind of like and "American choppers" thing, but with boats. So right now they are working on building a boat called the "nascar boat". This boat will be built displaying all of the top 43 nascar drivers numbers and then signed by each of them personally tomorrow at qualifying. Then they will auction it off on ebay when it is completed and all proceeds are going to benefit the "victory junction gang" charity. This is a charity that helps kids with chronic and/or terminal illnesses. They have a camp that is set up for the kids to go to and have fun for a full week with drs and nurses, repertory therapists, the works. Swimming, fishing, horse back riding, you name it. Anyway-they asked if I would bring Faith in today to get some pics of her in the boat. To represent these kids. So of course I said yes. WELL-when I got there they surprised me and Steve with a FULL WEEK VACATION to this camp for our WHOLE family!!!! They interviewed us and talked to us about cf, they were filming Faith, and why kids with cf couldn't be around each other (at the camp) etc, etc, etc. THEN they tell us that they want her hand prints to be lazered on to the dash of the boat saying something like "Thanks from all of us at the victory junction gang" Oh my I was teary eyed. It hit me after it was all over. I can't believe it. MY babies hands are going to be on this boat representing ALL of these kids that benefit from this great charity. I am just floored! They filmed her doing her hand prints on some paper for the scan. It was so cute. She did such a good job. It looks like this show will air the 20th of November, 2 days after Faith's second b-day. So me, Steve, and Faith will all be on the show that day. I don't know when we are going to the camp yet. I am still just in shock!!! It's nice to have some GOOD news every now and again. Our God is so awesome in how He opens these doors for us. When I get a definite time and date for the show I will let you know. Thanks for reading all of this.
Here is the link to the camp we get to go to.
http://www.victoryjunction.org/vj/index/aboutthecamp
Wednesday, August 03, 2005
Faith is doing better. She gained some weight so that was good. We had clinic yesterday. She is at 23lbs 1 oz. So she isn't where she was, but is better than she was last week. So that is good. She is still having to do the breathing treatments 2x a day and will continue to do so for the next month. I have a feeling that this may be a way of life for us now. She responded well to the Erythro. Her breathing has gotten MUCH better. She only labors to breathe every once in awhile now with activity. So that is good too. The dr. says that he doesn't want to do a ct scan because we already know how to fix the problem, and she would have to be put under to do it. Fine by me. He says it is inflammation in the lungs causing her breathing issues, which is why the Erythromycin made a difference. This is usually associated with an infection, but for some reason it appears it is just on its own in her, which is good and bad. Good because no infection, bad because the inflammation is what makes the lungs work harder, which is NOT a good thing. So, we are keeping her on the Erythromycin, and continuing with the treatments. The only thing now is she sounds really horse. Her voice is really raspy. Don't know why. She sounds like she has been a smoker for 40 years. It is kind of cute. Well that is all. Thanks for the prayers. Please continue with them.
By the way, if you are interested, here is a clip from a study done in 2004 that was done through the CFF. It is hard to read, but it explains what is going on, and how to pray (she does NOT have any infection, just inflammation) her lungs are VERY clear, and sound great! So that is good news. There is really no way to see if this is what we are really up against, just by the response of her breathing to the medicine we can assume it is. So please keep her in your prayers. Thanks.
****Over time, the persistent combination of infection and inflammation in CF lungs leads to their destruction. Several studies in recent years suggest that the frequent and prolonged airway inflammation in CF lungs leads to the eventual cardio-respiratory failure that is the primary cause of death in people with CF.
"It's traditionally been thought that the basic problem in the CF lung is an inability to clear bacteria, with infection leading secondarily to lung-damaging inflammation," says Dr. Karp. "Recent studies suggest it may well be the other way around: abnormally vigorous and prolonged airway inflammatory may be a primary problem. Such responses are inefficient at clearing bacteria, may damage the airway in ways that promote colonization with bacteria, and over time lead to airway destruction.*****
Wednesday, July 27, 2005
Well, we figured out what the fever was all about. Faith has roseola. I guess when you have a child with different problems you forget about the normal baby issues. Better this than anything else I guess. So now she is covered in a nice red rash. The erythro seems to be helping, as her breathing has been better over the past few days. We are still doing the 1-2 treatments a day. But I think those will be gone soon too. YEA!!! Thanks for all the prayers.
Monday, July 25, 2005
Well, today is a new day, and Faith's fever is gone. We went to the dr. today and it seems that she has lost 3/4 of a lb in the last 3 weeks. Not sure why this is, but we go back to the Dr. next week to see if she continues to loose, or hopefully see that she is gaining weight again. We are continuing the 3 treatments a day and hopefully her new meds will kick in soon so we can stop those sometime next week also. Please pray that she starts to gain weight, because this mamma is running out of fight. Thanks.
Sunday, July 24, 2005
Please keep Faith in your prayers today. She is running a 103.9 fever and is having a lot of trouble breathing. We thank you sooo much.
Saturday, July 23, 2005
Well, today we got another piece of our puzzle. It is a long story of how it took place, BUT Faith is now back on her erythromycin. As you all know Faith has been battling some labored breathing for the past 6 weeks or so. It all started about the same time she stopped the erythromycin but the Drs. couldn't link the 2 together by anything but timing. Well today I was speaking with someone whose son was having the same issues as Faith that also has cf. She told me her son had been diagnosed with air trapping in the lungs. This is where the air gets trapped into the lungs instead of being exhaled. So I got on the net and started researching it out. This was when God had me stumble across an article. It was a connection between erythromycin and air trapping. In this study the people who were on a low dose erythro therapy had increased lung function, and their breathing was easier, the air wasn't being trapped as much. The sirens went off for me! I was so excited I could have screamed. I knew this was our answer, and our connection! I immediately called her dr. and explained to him what I had found and he agreed with me to put her back on the erythromycin. So as of today, she starts it again, only now for a different reason. They are also discussing ordering a CT scan to confirm the diagnosis. But really, the response will tell. We are very excited to have this news, to know the problem, and to hopefully have our answer. We have been doing 2-3 breathing treatments a day to no avail, and added many new medications. It has been a long road of trial and error. Which for Faith and mommy was getting very trying. Although with this news came a bit of a bad news. If this is what is going on with her, that it is air trapping that is happening in her lungs, the Dr. says that it is the first sign of the lung disease part of CF. So please pray for our little girl, that this stops here. We don't want this to progress any further. She is still SO young to have these issues already. We know Gods word and we know that he is faithful. And that is where we stand! Thanks for all your love, support, and prayers.
Sunday, July 10, 2005
I just wanted to update you all that we are home now. The anti's weren't doing anything for her, and after a 2 am breathing treatment we figured out that her hard breathing was caused by her asthma. She has been put on 2 more asthma meds, xopenex and singulair. We will keep an eye on her, and make any adjustments as needed FROM HOME!!! Thanks for all the prayers and support. We wouldn't have been home this fast if it weren't for them!
Saturday, July 09, 2005
Well, we are still here. The drs. are still unaware of what is causing her breathing to be labored. I asked them today if it might be allergy induced asthma flare up. They are going to look into that. Maybe put her on a longer lasting bronchial diolater. I am hoping that maybe that works. The meds don't seem to be making that big of a difference anymore. The last 2 mornings she was huffing and puffing again. She has her dr.s stumped. Please pray that they figure out what is causing this soon, or at least let us go home and try things. They are messing around with her different meds, and thinking of putting her back on the erythro wondering if it is reflux that is causing these symptoms. I think they are guessing at this point. Who knows? I just want to go home. The boys are having a hard time with her being gone, and I not being at home most of the time. Thanks for the continued prayers. I will keep you all updated as I can.
Wednesday, July 06, 2005
Well, we are staying at children's hospital now. Faith is waiting to have her PIC line put in. She started 2 IV antibiotics yesterday, and it looks like they are already working, as they say her lungs are sounding better already. They will be sedating her to place the PIC line, so hopefully I will get to have a few hours of rest during that time. I am going to try and get home to see the boys sometime today. My mom is going to come stay with her so I can. She is doing really well, getting used to everyone poking and prodding all the time. Her spirits are up; she is just a bit tired. It looks like we are here for the long haul. 1 week min. possibly 2! Thanks for all the prayers. They are much needed and appreciated.
Tuesday, July 05, 2005
Just letting you all know that Faith is being admitted to the hospital for the next 1-2 weeks to undergo a course of IV antibiotics. We will be staying at Children's Hospital for the duration. Please keep her in your prayers and the whole family too as we get through this bump in the road. Thanks a bunch.
Tuesday, June 07, 2005
It went ok. We are trying no erythromycin again. So we will see how that goes. She weighed 22 lbs 2 oz. and was 30 1/2 in. long. SOOOOO she is now big enough for a VEST (a device that does her CPT for us, not manually). I am SO excited! Her physical therapy will be so much easier this way. Also, for the first time ever her lungs weren't perfect. They were, I believe he said, raspy. I am not taking this as hard as I thought I would when this day came. I guess I had prepared myself for it, in case this day arrived. I just didn't think it would be this soon. I thought it would take longer to hit this phase of her life. I am praying and believing it won't continue forever, or even until next visit in 4 weeks. We now have to do albuterol treatments and CPT (chest physical therapy) 2x a day for 10-20 min each. Yea right, get an 18 month old to sit for that long. Plus the 7 min. treatment. I have a call into the nurse to see if I can do the albuterol by her inhaler or if it needs to be through the nebulizer. Praying the inhaler will work for times sake. Well, that is our update for today. Just keep Faith in your prayers that this too passes. She also got her routine throat culture done, so please pray that that too comes back negative. I would HATE to have the summer full of TOBI treatments again!
Oh yea, and as for the Celiac and the new diet, things are going well. We are all adjusted and doing fine. We had a bit of a hard time through the transition time, but now we are smooth sailing. The only problem now, is I cook so much and it is not, well, very light on the calories, so I have to watch how much I eat. It's not lacking in taste that is for sure. The boys like all the food now, and think it is pretty great they get home cooked donuts and hamburger buns. At least it hasn't been a problem getting Faith lots of fat and calories in her diet. One problem solved! PRAISE GOD! Be blessed, and keep the prayers coming!
Tuesday, May 10, 2005
Today Faith went to clinic she was up a little on her weight. All was good. Nothing new really. Lungs were clear and they are happy she is growing. She is having a few sleeping issues so in the next few months we are going to be doing a sleep study for a night. This "may" lead to removal of her tonsils. We will wait and see. Her diet has been completely changed and we have been gluten free for 2 weeks now. We are hoping to see some positive changes in her soon! It was a big transition, but one that was well worth it! I want to thank all of you who helped out so much. You are such a blessing to this family! I can never thank you enough! Next appt. is on the 25th with the GI dr. as a follow up on her diagnosis. Hope you all have a great week, and thanks for reading.
Wednesday, April 27, 2005
Just updating to let you know that Faith's diabetes test came back negative. WOOHOO. This is such an answer to prayer. We are in the process of making the switch over to a non-gluten family. It isn't easy, but we will make it through. We will be meeting with the nutritionist for an in-depth visit on the 6th of May and will take things from there. Faith had clinic on Tuesday. She had a nasty cough that hit pretty hard really quickly so they put her on an antibiotic and it seems to have really done some good. She also had an ear infection starting, so it takes care of both in one shot. She was weighing in at a whopping 21 lbs 10 oz. and was 29.5" long. Her lungs were clear, and all else was good. I thank you all for your prayers and support.
Monday, April 25, 2005
Well the tests last week all went well and she got through them with no problems. I write this tonight with a very heavy heart. Today Faith was diagnosed with celiac disease. Her biopsy results came back positive. This is a really tough blow for us. We were really praying for better results. This is going to be a major lifestyle change for us, a major transition over the next few weeks/months. We have a very special girl on our hands. She appears to be the only one in the San Diego area with both Cystic Fibrosis and Celiac Disease. Her Dr. said she should play the lottery as she seems to beat the odds. We go to CF clinic tomorrow and will meet with the nutritionist to go over the necessary dietary changes. She is also going to be tested for Type 1 Diabetes tomorrow. She has no symptoms of this, but due to my conversations with the dr., we just want to rule it out since Celiac and delayed gastric emptying (which she also has) goes hand in hand with it. Faith has also developed a nasty cough today and we are praying this goes away quickly and with no issues. Please pray for us. For the strength that Steve and I need to get through this. For Faith that she would be healed and not have to deal with either one of these horrible diseases. For Faith's test to come back negative and for her cough to go away quickly. We appreciate you aligning your prayers with ours. We need them SO much right now. If you would like to know more about Celiac Disease you can go to www.celiacfoundation.com.
Monday, April 11, 2005
Well-updating with the test results from the Celiac Panel they did. The Celiac test was inconclusive again. The test consists of 5 tests and I guess that 3 of them came back normal (the more reliable 3) and 2 of them came back abnormal. So they are not going to make any type of diagnosis either way until after her endoscopy which is scheduled for the 19th of April. She also has a gastric emptying study which is going to be on the 18th of April. This consists of her drinking radio active milk and then her being strapped down to a table for 90 min. while they take a bunch of pictures. FUN FUN FUN! The endoscopy is where they do a biopsy of her stomach and upper intestine. For this test she will be under a general and incubated. I think that is all we have to update on for now. I will update again after her tests are done, and we get some answers as to what is going on in her little body. She continues to grow well, and bless everyone she comes in contact with in the meantime. She is SUCH a blessing to our family. I thank God for her everyday.
If you pray please align your prayers with ours that the Celiac test comes back negative and that everything goes very smooth with her tests. We are also praying for peace and strength for mom and dad. Lord knows we need all we can get. We are also praying that she comes out of the general quickly and easily and that no overnight stay is necessary. Thanks again for all of your prayers and support.
Friday, April 01, 2005
We are awaiting some test results called a celiac panel. We are praying and believing for Negative results on this test. Please agree with us that the tests will be Negative. Thank You. I will update when we get the tests results in.
Also-her weight was wrong at the previous Dr.s visit. She is weighing at 21 lbs 5 oz. Just thought I would clarify. Different scale, different results. So we are sticking with the weight from her CF dr.s office.
Friday, March 25, 2005
Well we got back most of Faith's labs today. Her food allergies were all negative so that is great! Her immune system in working great and her protein/liver levels were all norm. Her white blood count was a little high, but not much. There was no sign of an active infection. Her clotting times were also normal. So with that we are still waiting for her celiac test to come back. We should find out the results of that on Tues. We did schedule her Endoscopies for Tues, April 19th. Thanks for reading up, and have a Happy Easter. Be blessed and remember the life that was given for you. THANK YOU JESUS!
Wednesday, March 23, 2005
Well today we had an appt. with the Gi Dr. I really liked her. She was very nice. Faith's weight shot up a lot, so that was good. She is weighing in at 21# 15oz. WOOHOO. Way to grow Faith! Here is the scoop: They are going to be running some tests on Faith in the next few weeks. Today we did the easy ones (I guess) it was blood tests for Celiac disease (www.celiac.com) and tests for food allergies. They also did a complete blood work up too, testing all her vitamin levels and such. This was NOT fun. It was VERY painful for her. Poor Faith slept for 3 hours after this ordeal. She was such a trooper. We should have those test results in next week. As for the other test they are going to be doing a Milk Scan (much like an upper GI from my understanding) and Endoscopies. The endoscopy is the one I am not looking forward too. This one they are going to have to have her stay at the hospital for about a day. Hopefully NOT overnight. She will be put under general anesthesia (SP?) and be incubated. They will be doing a biopsy of her stomach and intestine to see what is going on in there. I know it is necessary, but still VERY scary for mom and dad. Please pray for peace for us, as we will need it. All these tests should be complete within the next few weeks, and hopefully we will have some answers as to what has been going on with our girl. We thank each and every one of you for your prayers. We couldn't get through this without them. I know I have said it so many times before, but it is SO true.
Tuesday, March 15, 2005
Well today we went to CF clinic. It wasn't all good news this time around. But we are trying to keep our heads up. Faith has been having some digestive issues, and nothing her CF dr. has tried has worked at all. So we have been referred to GI Specialist. We should be seen within the next 2 weeks and will be scheduling some imaging test along with a test for Celiac disease. Celiac is where the body does not tolerate Gluten. So-upon getting any more information on this I will update. She also had her quarterly throat culture done, so we are praying for a negative result on that. Faith is doing well; just her body hasn't yet come into alignment as it should. She has only gained 3 oz. in the last 5 weeks. This isn't great news, but at least she didn't loose weight. So for that we are pleased and the drs were too. Her lungs were clear as usual. So that continues to be a blessing. Please keep Miss Faith in your prayers and Mommy too. Sometimes all of this takes its toll on mommy and daddy as well. We could sure use some strength and peace right now.
Monday, February 21, 2005
Faith started to walk yesterday. WOOHOO. We are all so excited. She isn't sure what the big deal is though. The kids and Steve were in the kitchen making some desert last night and she decided she would stand up and walk right by daddy. All of a sudden Steve yells out, "Um, Anja Your daughter is walking across the kitchen." I ran out and sure enough she was just strolling along. She continued it all night long, and we got it on video and on film. We are SO happy.
Tuesday, February 15, 2005
Well the decided that they had to put Faith back on her meds. She started to throw up on a nightly basis, and wasn't eating well. So back on the meds we go. Our next step is to meet up with the GI Dr. So please keep her in your prayers. To be honest those GI dr.s make me nervous. (don't tell Faith). So some prayers for mommy aren't bad either.
Saturday, February 12, 2005
Faith went to CF clinic on Tuesday the 8th. It went really good. Faith weighs 20lbs 15 oz. and is 28 1/2" long. We made some great progress at this visit. Faith was taken off one of her medications that were for her delayed gastro emptying. The drs believe she has "grown out of it". We believe she was healed. Last time they took her off of the medication she stopped eating all together. This time she has done wonderful. We are SO excited about this. The enzymes that they switched her to last time didn't work very well, so they went back to the ones she was on before. Her body seems to have adjusted quite well now that we have taken her off that other medication. We think it was part of the problem of her absorption. Her lungs were clear and all was well at this visit. All of her other yearly tests came back fine too.
Faith did get the flu on Wed. night, but it was just that night and went away quickly. We were very pleased at that. She is back to normal now, and getting into everything.
Well thanks for reading. I will keep updating as needed. She still hasn't decided to walk yet. I will let ya know when she does.
Friday, January 14, 2005
Faith had clinic on Tuesday the 11th. She is weighing in at 20 lbs 6oz and is 28 1/2 inches long. Her lungs are clear and doing very well. We went in for her yearly tests today. She had a chest x-ray done and a series of lab tests done to test her vitamin levels and nutrition levels. Most of them have come back within normal range so far. We haven't gotten all of them back, but so far it is looking good.
They decided to switch her enzymes again this time around in hopes that we can get her food absorption levels to there perfect place. I am trusting God that this happens soon. I am sure that it will. Her next appt. is in 4 weeks. I will update again then. Thanks for staying informed. And keep the prayers coming.
Monday, December 27, 2004
Just letting you know that her culture came back negative. Thank you Jesus! Our prayers were answered. Thanks for praying.
Monday, December 20, 2004
Faith had a cf clinic appt on the 14th of this month. She is doing wonderful and is getting SO big. She weighed 19lbs 13oz. She hasn't grown at all, so she just continues to get pudgier. She did get a throat culture done, so we are praying that it comes back negative again. We don't have any steps yet, but getting close. Hopefully that will be her Christmas present to us.
Tuesday, November 16, 2004
Today Faith had her 1 year clinic appt. It was a wonderful appt. She weighs 19lbs. exactly. She was 27 3/4" long. Her lungs were clear and they were very excited about her growth. She had gained a whopping 1/2 lb in a week! We were very excited to have such a wonderful appt. We pray this is what is to come for the next year.
