Our summer has been filled with doctors visits, praying, diagnostic tests, praying, waiting, praying, research and more praying. Well... I wish we had better news to report to you. However, Leah has been diagnosed with an NTM (Nontuberculous Mycobacteria) infection, more specifically, a mycobacterium abscessus (also known as m. abscessus) infection. Testing ProcessThis is a very serious infection and the treatment is extremely intense and taxing on the body. Therefore, there are a series of steps to go through to diagnosis this infection and determine whether or not she has an active infection. Here is the process we have been through this summer after having two positive NTM cultures.
Lots of questions... not very many answersAfter our appointment with Dr. Collins and Dr. Akhter on July 3rd, we were pretty sure that we were going to start treating this NTM infection soon. The treatment for this NTM infection is very intense. It involves 2-3 weeks of IV antibiotics, followed by oral and nebulized antibiotics for probably at least a year, in which she would be on multiple antibiotics at a time. This particular infection is known to be extremely resistant to treatment. During the weekend, we spent time talking and praying and asking more questions and praying and asking others to pray. We put a call in to doctor on Monday with a list of questions. Since this is a rare infection, there's just not answers to many of our questions. We specifically wanted to ask if we could consult with other CF doctors who have treated patients with the m. abscessus infection. Leah is Dr. Akhter's first patient to have multiple positive NTM cultures. He has had two bronchiectasis patients who have had one positive NTM culture, but their repeat culture came back clear. Leah is also Dr. Collins first patient with this infection, although a doctor she works with has seen one or two patients with it. Dr. Akhter also consulted with Dr. McColley (the director of the CF Center at Lurie Children's Hospital in Chicago) and she has not had any patients with this before. Dr. Akhter contacted Bruce Marshall (the head of the medical branch of the CFF). He said most centers have probably only seen one or two CF patients at the most with this infection. He suggested contacting Dr. Scott Sagel (the director of the CF Center at Children's Hospital Colorado - which appears to be the leading experts in NTM and is the pediatric equivalent to National Jewish for adults). Dr. Sagel responded to Dr. Akhter and put doctor in contact with Dr. Stacey Martiniano, who is also at Children's Hospital Colorado and known as the local CF NTM expert. They both recommended NOT starting treatment on Leah right now, but to watch her closely. Since she is so healthy right now, not showing any symptoms of having an active NTM infection, and the treatment requires being on 2-3 antibiotics for years, it is their professional opinion to watch Leah closely to see if the disease is active. They said the slow clinical progression of the disease would not put Leah to harm. To watch Leah closely, we will be looking for any clinical changes (decline in pulmonary function, changes in chest x-ray or CT scans) or symptoms that might indicate disease (increased cough, fever/night sweats, weight loss). We will have appointments every 6 weeks. We will do a PFT (Pulmonary Function Test) at each appointment, a chest x-ray every 3 mos (when CT Scan is not done), and a CT Scan done every 6 to 12 months. If she starts showing any of these changes or symptoms, we will first try to treat any of the typical CF pathogens Leah may have (she has cultured both staphylococcus aureus and haemophilus influenzae for years) before starting NTM treatment. Doctor said that he will be able to consult with both Dr. Sagel and Dr. Martiniano on Leah's case. For those interested in learning more about the m. abscessus infection, we would be happy to pass along some of the medical articles we have been researching. Let us know and we can send it to you via email. Here is a link to information on NTM infections from the CFF: http://www.cff.org/Adults/Germs/NTM/ How are we doing?This summer has been a bit crazy for us. We have been praying for a miracle. Honestly, we don't feel very confident in the treatments available for this infection, so we are convinced that we need to trust God with our little girl. We are praying that Leah will know how much God loves her as she goes through this. We are asking for God to work in a mighty way and take away this infection and heal Leah from this NTM disease. We know God is able to do what seems impossible to us. We are praying and trusting in him. As far as in how Leah is doing... she continues to look great and is not showing any outward symptoms. It is hard to believe this infection is inside her little body. Honestly, we are very concerned about the impact of this infection. We need your prayers and support as we go through this.
We are thankful that it has not slowed her down at all. She is fully taking advantage of her summer, playing with her sisters and friends, running around, swimming in our pool, reading new books, even going on all the water slides at the water park! Please keep our little girl in your prayers!
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We knew this could happen. We knew this would happen. But really... it's not easy when it does. This week has been full of some fantastic highs and some hard lows. I know it is long, but if you take the time to read it, you will get a full picture on how Leah is doing. Here we go... Memorial Day Weekend - CelebratingWe celebrated Leah's 7th birthday over the Memorial Day weekend. Starting off with Daddy coming home on her birthday after a week out of town. So much fun, so much activity. Leah had a blast and stayed up way way too late with her cousin on her birthday sleepover. Tuesday - Flare-up & Phone CallLeah was excited to head to school. The first graders were "going to camp" this week during school and doing all sorts of fun "camp" type activities. In the afternoon, the school nurse calls because Leah had started coughing a lot during recess and lunch. It didn't totally surprise me. We had noticed Leah's cough had started to increase a bit on Monday. So, we were on alert. She actually was able to finish the school day, but by the time she went to bed, her cough had significantly increased. Even Leah said, "I want to go to school tomorrow, but I don't think I should." I also received a phone message from Dr. Akhter. He wanted to talk with me about Leah's culture results. At our last regular clinic visit in April, her throat culture at first came back the same as it has been in the past. After a couple of weeks, I received a call from our nurse saying that her culture showed a very rare amount of an acid-fast bacilli, which further testing confirmed to be NTM (Nontuberculous Mycobacteria). This is relatively rare among CF patients (only about 10%). Our clincic has only had a couple of CF patients that have had this. Before treating it, they do a repeat culture to see if it goes away on its own without treatment. Leah had a repeat culture done May 12. Dr. Akhter was calling us himself to tell us the results, but I missed his call for the second time that day. Ugh... now, we needed to wait until the morning to find out. Wednesday - Culture ResultsWe kept Leah home from school to watch her and increase her treatments. When I talked with Dr. Akhter, he confirmed what we were afraid of - Leah's repeat culture again tested positive for NTM. It is being sent onto a specialty lab in Cook County for further testing. He wanted to meet with us for a consultation to discuss further testing and treatment options. If you would like to learn more about NTM, please go to: http://www.cff.org/Adults/Germs/NTM/ Thursday - Consult & Tape the Principal to the Wall DayWhen we met with Doctor, he talked with us about NTM. We were able to follow pretty well with what he was saying from reading up on it. Since NTM is not that common, there is no set protocol on how to treat it specifically related to CF. Doctor also said that this is a more troublesome bacteria - because it is hard to treat and it causes problems in the lungs (scarring, lung damage). The first thing we need to do is determine if the infection is colonized (meaning it is present, but not causing problems) or if it is active (causing disease). Further testing is required to do this. Our next step is for Leah to have a CT Chest Scan. It is scheduled for Tuesday, June 10. Doctor will be checking for enlarged lymph nodes and nodules. If that is not conclusive, he would do a bronchoscopy, which would allow him to do a culture on sputum taken from the lungs. If either of these tests indicate the infection is causing disease, we would begin treating it with antibiotics for a minimum of 12 months. Doctor said we would continue treating it until we get rid of the infection and her culture comes back clean. Doctor described this as a bump in the road. It happens and we need to deal with it. It is serious and it makes us cry out in prayer, asking God for protection over Leah's lungs, healing, and a cure. Oh, that a cure would be found soon, so that an infection like this will not be able to do the damage it is capable of doing. On top of that, Leah is having a bit of a flare-up right now, which is most likely from allergies/asthma. Her PFT (Pulmonary Function Test) was lower than last time, which may be due to her asthma or the flare-up. Doctor wants us to increase her asthma medication. We are continuing all her other treatments the same, while adding an extra treatment during the day to help with her flare-up. So, you can imagine my emotion when we took Leah back to school that day for a very special event that was held in honor of her. Thursday was Tape Mr. Munch to the Wall day. Mr. Munch is the principal at Leah's school (and he might just be the BEST principal in the world!) For every $1 a student brought in, they received a piece of duck tape to tape Mr. Munch to the wall. Why would Mr. Munch agree to such a crazy scheme? To raise money for the Cystic Fibrosis Foundation in honor of Leah! I was completely overwhelmed (and cried of course) to see the love and support that the students and staff of Heritage Trail showed to Leah. That gym was completely electric with excitement as the kids were lined up to get their chance to tape Mr. Munch up on the wall. They raised over $1150! AMAZING!! Boy, oh boy, that is A LOT of tape. And, Mr. Munch was such a good sport. It took them over two hours to place all the tape on him. And then Leah got to move the stool out from under his feet at the end of the day. Yes, he stuck there!! Honestly, I think he was in a bit of pain by the time it was over... but he still smiled through it all (even after the secretaries and nurse smashed plates full of whip cream onto his face!) The kids loved it! Words are not enough to say THANKS for such a wacky and fun way to raise money and help us find a cure. And it couldn't have come at a better time! End of week - A Couple of Special HighlightsOn Thursday, we also found out that our oldest daughter Hannah made it into the Troy Middle School Symphonic Band for next year! She is super excited about this. We love seeing her enjoy playing the clarinet and being part of the band community. She has natural talent and plays beautifully. We are so proud of her!
#1 - I am not as much of a blogger as I was hoping to be.That's about all I have to say on that subject. #2 - CF can catch you off guard.I have heard some of my CF mom friends talk about how CF is like an invisible disease because our kids can look so healthy on the outside, yet they are fighting this terrible disease on the inside. The truth of this reality became real to us this past year. In June, we had Leah's annual clinic visit. We went early to do her chest x-ray and lab work, then after lunch, we had her Pulmonary Function Test and our clinic visit with her CF care team. Leah looked great! We were flying through our clinic visit with all of the team. Everyone was pleased with Leah - she had been gaining weight (something we were focusing on), her lungs sounded good, and she had no cough. Overall, she looked and sounded healthy. As doctor was walking out of the room, we asked if he had a chance to look at her x-ray. He had all of us follow him to the computer to pull them up for him to review. He took one look and said, "We are not doing enough." He sent Leah back to the room and discussed with us what he was seeing. He showed us the x-rays and explained to us that there was surprising change from last year. There were pockets of damage in her lower right lobe and spots on her upper left. We were very disappointed to see and hear this, as was doctor. It almost didn't make sense to us. She seemed like she was doing fine on the outside. We were feeling so confident that we were going to get a good report that it really shook us up to realize that her lungs were being affected as much as they were. We added a new treatment to combat this. Leah started on hypertonic saline (a nebulized medication) in addition to her other treatments. This helps thin the mucus by hydrating the airways. She also started on Advair (an inhaled medication) as doctor can see a significant change in her pulmonary function test before she takes a bronchodilator treatment and after. He says this indicates that she also has a touch of asthma. CF had caught us off guard and fooled us. On the outside, Leah looked fantastic, but inside, her lungs were already showing signs of this lung disease and the damage that occurs from it. After being on the new treatments, a follow up x-ray showed some improvements in her lungs. But there are no clear answers on whether this damage is permanent or can be reversed. So, we keep praying and doing everything we can to control and protect Leah's lungs from further damage. #3 - Our team rocked 2013
I love seeing Leah's Front Line in action... whether it is people supporting us by making a donation, attending events, entering a raffle, walking with us, helping us raise money, cutting hair, hosting a garage sale, donating gently used items, buying refreshments at movie night, volunteering at the races, or selling delicious lemonade. It takes all of us working together! And together, we are making a difference!
Thank you for being part of our lives and joining us in our efforts to find a cure!! Yes, yes, yes... Christmas is right around the corner, but while it is still November, I wanted to get you caught up on what is going on with Leah as I reflect on some of the many things I am thankful for. KindergartenLeah is in full day Kindergarten and LOVING it!!! She looks forward to going to school and seeing her teacher and her friends. Even if she has to "work" while she is there (that is what she calls it), she goes eagerly and is learning so much! Mrs. Buell
Mrs. Buell goes over and beyond to create a safe environment for Leah at school. This includes regular hand-washing, not just for Leah, but the whole class. Following the three foot rule by moving a sick child away from Leah. Allowing Leah to have her own set of supplies. Let's just say that antibacterial soap and disinfecting wipes are a prevalent and regular part of the daily routine. She also created a simple communication log that she fills out every day that focuses on two things - whether Leah is coughing during the day and how much Leah ate while at school. These are a few examples of the many ways that she has helped make school a safe place for Leah, especially focusing on infection control. We are so thankful for her. On top of that, Mrs. Buell makes learning so fun! She is one of our favorite teachers we have had the privilege of working with. Other Staff at Heritage TrailEspecially Mrs. Smith & Mrs. Anderson Mrs. Smith is the teacher's aide in Leah's classroom. Just like Mrs. Buell, she goes over and beyond to watch out for Leah and make school a safe place for her. For example, every morning she wipes down Leah's special spot that she goes for her medicine. They set up a chair out in the hallway so Leah does not need to go into the nurse's office to get her medicine and be exposed to any of the sick children in there. I volunteer in the classroom and have seen Mrs. Smith in action. She is so good with the kids. Put Mrs. Smith together with Mrs. Buell and you have an outstanding team!! Their love and care for the students is evident. We are so very thankful for both of them. Mrs. Anderson is the school nurse. We are thankful that she is there watching out for Leah and taking care of her. Every day, Leah visits her to take her enzymes before snack and lunch. She has been very good at communicating with us if they have any concerns about Leah during the school day. We feel confident that the staff at Heritage Trail is doing their part to protect Leah's health to the best of their abilities. Our CF Care Center TeamWe are so thankful for our CF Care Center Team at Advocate Children's Hospital in Oak Lawn, IL. They are fantastic!! Dr. Akhter is so good with kids. Leah enjoys seeing him and wants to make him proud. She couldn't wait to show off her very first PFT results at our last visit. Our nurse Jeanne is always willing to answer my many questions until I have a good grasp on what is going on. We love how these two and the rest of the team work together to offer the best care possible. We appreciate how they take time to listen and care for us as a family to help us manage Leah's health most effectively. Rocket shipsLeah started doing Pulmonary Function Tests (PFT) at her last CF clinic visit. This test is done to track how her lungs are functioning. As she blows into the tube, she "blows" a rocket ship into space on the computer making this test fun and enjoyable. And yes, she does have a competitive spirit that seems to run in our family, so she did the test the maximum times allowed. Regular CF Clinic visits and culture tests Every three months, Leah goes in for regular clinic visits to provide her with the best care possible for her CF. At these visits, she has a culture taken to check for any bad bacteria growing in her respiratory track. We were pretty shocked and surprised when we heard the results of her latest culture. She tested positive for two bacteria infections, Staphyloccus aureus (Staph) and Pseudomonas aeruginosa (PA). We were really hoping she would be older before she began fighting these infections. Looking at her, you would never know that her little body is fighting these dangerous infections. Thankfully, it has not slowed her down at all. We are thankful that our CF center knows that to provide the best care, they perform these culture tests regularly in order to catch any infections early, regardless of whether any symptoms are evident. TOBI and other antibiotics We are thankful for the medicines that are available today to treat these infections. Leah is currently finishing up TOBI, a 28 day inhaled medication to treat the Pseudo infection. Right now, the infections are in Leah's airways and have not settled into her lungs, so we are hopeful that the antibiotics will be able to rid her body of these infections. After she finishes the TOBI, we will have another culture taken to determine what our next course of action should be. Please pray with us that the culture will come back negative for both of these bacteria. Compliant and feisty spirit Leah is such a trooper and a fighter. She is really good about doing her treatments, even when we have to increase or add different treatments into her routine. We are so thankful that Leah is willing to endure all of this with a mostly pleasant, happy spirit. Grace Bible Church We are thankful to be part of a church that stands by us and cares for us as we fight this disease. They help keep us grounded in our faith as we trust God with Leah. We appreciate the dear people who are part of our lives, who love our little Leah, who ask questions, and pray for us. Our family
Leah's Front Line Facebook page We are thankful for the many people who support Leah and pray for Leah. We appreciate the outpouring of support, even from people that we have never met! Leah's Front Line team Words can not say enough of how thankful we are for the many, many people who walk with us, volunteer, raise funds, and donate money to support our efforts to find a cure for Cystic Fibrosis. We are so humbled by the way people have rallied around to help us add more tomorrows every day for our Leah! We appreciate each and every one of you!!
Ahhhh, summer time! While Leah spent most days playing with her sisters and swimming in our pool, she has some really big and exciting news to share. About a week after she turned five years old, she lost her first tooth! She was sitting at dinner saying that she felt something funny in her mouth. After checking it out and not finding anything in there, we realized that her tooth was loose. She wrote a note asking the tooth fairy to come because she had a very loose tooth. The next morning she came into the room saying, "Ma ooth...ma ooth" That little girl sat down right on the counter in front of the mirror and pulled her tooth out before I could even get the stool for her. She was so excited to get a note from her tooth fairy, Jennifer. (Our girls each have their own tooth fairy.) And she doesn't just have one note from Jennifer, but she has two because she already lost a second tooth! Jennifer says that Leah is keeping her busy. Another BIG piece of news from this summer is that Leah started swallowing her enzymes whole! Everytime Leah eats, she needs to take pancreatic enzymes to process the food. Before, we would open up the capsules and pour the little pellets into her mouth for her to drink down. Now, she can put the whole capsule in her mouth and swallow it down! Not only that, but she will take the handful of enzymes (she takes 4 with meals), pop them all in her mouth at the same time and just like that, she drinks them down! Yay! This is such a big accomplishment for a child with cystic fibrosis. Leah takes an average of 14-16 enzymes a day, which is about 450 a month, and about 5475 enzymes a year. Yes, we have been celebrating this and her new found independence in helping maintain her health. We also are celebrating how much easier Kindergarten is going to be now that she can swallow her enzymes! We are so proud of her! On the Road... to Cape CodThe Nordquist girls - Molly, Emma, Leah, Hannah, Claire, Rebekah Early July, we headed out on vacation. Our first stop was Syracuse, NY, where Phil grew up. It was fun for Daddy to show off his old stomping grounds to the girls. We got a chance to visit Phil's home church, North Syracuse Baptist Church, and reconnect with some old friends, including a dear family whose daughter lost her battle against cystic fibrosis in 1989 when she was twelve years old. Hannah & Bekah also had the opportunity to meet their pen pals that they have been writing to for the past year. From there, we continued on to Cape Cod to visit with Phil's brother's family, Eric, Amy, Emma, Molly, & Claire. The girls could not wait to see their cousins. They absolutely love spending time with them. It's so fun to see them playing all day long. We spent our days at the beach. A short walk down their street is access to a private beach on the cape side. We visited this beach our first day during high tide to go swimming and then every evening at low tide to watch the sunset and look for crabs. We spent the next day at a beach by a fresh water pond (which was really more of a lake) that was in the middle of the Cape. The water was perfect for swimming and kayak rides. And, of course, some brotherly competition as Phil and Eric raced between the piers to see who could swim the fastest. A quick drive on the next couple of days took us to the beach on the ocean side. Even though the water was cold, the older girls were out there thoroughly enjoying boogie-boarding. Hannah & cousin Emma even saw a seal swimming close to them. They, of course, came in right away as seals are shark bait. The crazy thing is that we later found out that there was a 12-14 foot great white shark that chased a kayaker just two miles away at the next beach. Scary!! (By the way, the kayaker paddled away safely.) Another highlight of our trip was the Fourth of July celebration. We headed down to the beach to see the sunset and while we were there, people started showing up with boxes of fireworks. Eric ran back to the house to get his stash and hurried back to the beach. All along the beach, you could see fireworks being shot off. And not just little fireworks, some of these guys have obviously done this before because they had some really amazing fireworks. It was a spectacular show... that is until the police man showed up walking from group to group, telling them to stop. Apparently, it is not allowed. So, we headed back to enjoy s'mores and a campfire. Fun times and lots of great memories! Clean Your Closet for a CureAt the end of July, we had our second annual Clean Your Closet for a Cure Garage Sale. With thirteen families donating items to our sale, we had a really nice selection of items to sell. This year, we decided to run the sale a little differently. Instead of pricing the items, we asked people to make a donation for what they thought was a fair price. This seemed to not only help focus the sale on being a fundraiser, but gave us the opportunity to raise awareness about cystic fibrosis as we shared Leah's story. I would say most people were respectful of our request and many generous in their donations. Altogether, we raised $1126.65 at the garage sale to help us find a cure for Leah! A BIG BIG thanks to Melissa Drechsel for hosting and organizing our sale! And a shout out to her Mom's Club for the many who donated items and/or shopped our sale. As summer vacation is quickly coming to an end, we are busy getting ready for school. We are thankful for an enjoyable, fun, relaxing, and healthy summer! Thinking about summer, I can't forget to mention Leah's "pets"... last week, she brought home Angel (nicknamed Gracie) the Grasshopper from church. We convinced Leah to take off the top and see if Angel wanted to stay in the box or jump out. We found out that Angel is a good jumper and off she went. This week, Leah brought home Sparkles the Worm, who is living in some dirt in a cup. What fun! I guess this is what happens when you don't have a dog.
Extra! Extra! Read all about it!May was a BIG month for Leah! To kick off the month, Leah was featured in an article about cystic fibrosis in the Herald-News newspaper! We were surprised, but very excited, when the paper contacted us for an interview. One of our Leah's Front Line walkers had contacted the author as she was raising support towards her Great Strides efforts, meanwhile, the author's son was just talking with her about another family whose boy has cystic fibrosis. All that to say... next thing you know, we were given the amazing opportunity to be featured in the newspaper to help raise more awareness for cystic fibrosis! If you haven't gotten the chance to read the article, you can read it here. Preschool Graduation
GREAT STRIDES - Taking steps to cure Cystic FibrosisThe very next day was the Great Strides walk!! This was our team's third year walking in Great Strides. It is truly an honor to have so many people come out and walk with us or volunteer to help at the walk. Even though the weather was a bit chilly and we had a little rain, we had an amazing time because it is the people supporting us that makes this day so special for us! A big THANKS to all who who walked with us, volunteered at the walk, and/or donated to support our efforts. Your support is so so so appreciated. We are so thankful to have people stand by us as we fight this disease! Together, we are making a difference! One of Phil's students brought a bunny for Leah to play with at the walk. How fun is that?! The bunny was a big hit with the kids. Let's just say that the bunny got LOTS of love that day. All the kids were given very cool "Blow Away Cystic Fibrosis" Great Strides frisbees, which were put to use right away. The kids also enjoyed seeing Spikes (the Joliet Slammers mascot) make an appearance at the picnic. Birthday GirlThe following week, we celebrated Leah's birthday. She was so excited about her birthday and turning 5 years old. Her birthday wish list included: A bird that flies around and lands on your arm, a puppy (a REAL one), balloons, a webkinz, a ball, and a computer! She cracks me up! She couldn't wait for her birthday party with streamers, balloons, and cake (she wanted a chocolate cake with chocolate frosting & sprinkles). You know what is awesome about a five year old... even the little things are incredibly exciting and special!! On her birthday, Hannah was blowing up some balloons and came up with the idea to surprise Leah with some decorations. She would take Leah outside to play so Bekah & I could put up streamers. Then, both Hannah & Bekah hid and jumped out shouting surprise when Leah came in. Leah was surprised... and I think she really liked her surprise! After all the anticipation of her chocolate cake with chocolate frosting... she didn't even eat a bite. Granted she did just open up a ducky that swims in the water, which captured her full attention. The simple things in life that can bring much joy!
May was a busy month and we are ready for summer break! It is officially started as Hannah & Bekah finished up school on Friday! Bring on the FUN!
Apparently, Leah slipped and fell in while walking through the creek. And I hear there was quite a leaf fight with Coach Jesse, evidenced by the little pieces of leaves all over her hair. Leah kept saying, "Why did Miss Connie and Coach Jesse want us to get so dirty? It's 'gusting!" Of course, I needed to take pictures/video to capture the moment before we headed in to clean up. It was like a three wash cycle to get her clean. First we plopped her in the bath for a full body pre-wash. Then drained the tub and rinsed her down with the shower, trying to get all those pieces of leaves out of her hair. We finished with a final wash in the bath. We had to do the same with her clothes (rinse, scrub, and wash). Except for her socks, they were beyond saving. I couldn't wait to chaperone the Wednesday class and see the action first hand. We started off the day at the playground. Then, the kids played in the sand. I thought it was smart to play in the sand before going to the creek and getting wet. Next, we went for a hike through the creek. Down the trail and through the mud we trekked. On this day, Leah was very careful and successfully hiked through the creek without falling, keeping herself relatively clean and dry. However, a couple other kids slipped and got pretty wet and dirty! They were excited to spot a duck swimming through a tunnel. Then they all chirped like little birdies as Miss Connie feed them gummy worms. They also played in a pile of woodchips with shovels and rakes. Then off to the dirt piles to play with real garden tools. Leah and her friends made up a spontaneous cheer about gardening. It was so cute, I asked them to do it again. Then they listened to the ocean as they looked at and examined shells. It was a full, fun day! I was so glad to be part of it. But, the week was not over yet.
Her favorite station was the WORMS lead by Miss Connie. After they learned about the life cycle of worms, they got to hold a worm if they wanted to. Leah was the first one ready and waiting for a worm to be handed to her. Afterwards, she told Miss Connie, "I love those worms. They are so cute." That's not exactly the word I would use to describe them. Leah enjoyed Nature Week to its fullest! I love that she can look at the pictures and video of herself all muddy and 'gusting and laugh. She is a little explorer and Mommy isn't always ready to take on creek hiking... so thank you Sunshine and Rainbows for giving her a great fun adventurous week of school and learning.
During the summer, I meet with Karen Cooper, the preschool director, to talk about my concerns. I come to find out that she is not only familiar with cystic fibrosis, but one of her daughter’s closest friends has cystic fibrosis. In fact, she and her daughter have been involved with the GREAT STRIDES walk to support this CF friend (who we also know through the walk). Right there, that spoke volumes to me as a CF parent. She went on to encourage us that they would do their best to accommodate any specific needs we have to make preschool a safe environment for Leah. I also had the opportunity to meet with Leah’s teachers before school began to talk with them about Leah. They were very supportive and ready to do their part in making Leah’s first year of school a success. I must do a BIG shout out to Leah’s teachers – Miss Connie, Coach Jesse, and Miss Tammy. She LOVES preschool and LOVES her teachers! A couple of weeks ago, Leah performed in a Cinderella play at preschool. She was one of Cinderella’s step sisters. When she was first assigned the role, I asked her if she was going to be a good step sister. She said, “No! I am going to be a BAD step sister, just like in Cinderella.” She is so cute! We were so proud of her as she worked hard to learn all her lines. All the kids did a fabulous job performing the little plays!
Preschool has been a great experience for Leah! We are thankful to have a great start to her school experience, especially as Leah will be in full day kindergarten next year. We are pleased to say that she had a very healthy fall and winter this year. She only missed a couple of days of school. Her teacher even called to check on her to make sure she was okay. Love them! It is nice to know that we made the right decision. Every three months, Leah has an appointment with her Cystic Fibrosis Care Center team. During these Care Center visits, she is seen by her CF doctor, nurse, nutritionist, respiratory therapist, and social worker. At her last visit on January 17, Dr. Akhter was pleased with how she was doing. He likes to say she is on cruise control. Her lungs sounded clear and she had no cough. His only concern was that her BMI percentile dropped to the 25-50%. So, he wants us to add more calories to her diet to get help her gain weight. We were also glad to hear that her culture came back clear of bacteria. But by the time we received the results of her culture, about a week after her appointment, she had come down with a cold. This cold has been lingering and we were hopeful that it would clear up on its own. However, about a week ago, her cough began to increase and become more wet and junky. So, Leah was put on antibiotics to help clear up this infection. Thankfully, she isn't acting sick and does not have a fever. However, antibiotics often cause her stomach to get upset and disrupts her eating habits. Prayer Requests
Before Christmas, I had the opportunity to share with my MOPS (Mothers of Preschoolers) group a testimony of “Gifts from God” in my life. As this talks about how God helped us adjust to our new normal after Leah’s diagnosis, I wanted to start our blog by sharing this story with you:
God does truly know best and loves us deeply. We trust in his goodness and plan for Leah’s life. We also earnestly hope and pray for a cure to be found for cystic fibrosis. We pray for God’s healing and protection over Leah’s health. Please pray with us… May God receive all the glory and honor!
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We are truly blessed. We want this to be a place we can share updates on how Leah is doing with her CF. As well as a place to share our hopes, dreams, and prayer requests. Thank you for loving and supporting Leah as she fights everyday to add more tomorrows. SubscribeArchives
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