Latest news

Whew! To say a lot has happened since my last post would be an understatement. I can't believe we are already 3/4 through the school year. Time flies when you are having fun, or rather when you have 3 active kiddos. We celebrated good health for several months which is quite an accomplishment for our Aiden. Warm weather seems to agree with him, but the winter months are not so kind to his lungs and ears. In November we met my parents at Wilderness in the Smokies for Thanksgiving. It is a hotel/condo complex in Sevierville with indoor and 0utdoor water parks. The kids had a blast enjoying water fun in winter. Aiden showed no fear on the water slides or the wave pool. He loves the water!!! The following Monday Aiden was scheduled to have a bronchoscopy, ear tubes placed, and a GI probe to determine if he actually had acid reflux. When they discovered he was aspirating back in March, they automatically began treating him for reflux, so they wanted to be sure we needed to be treating him. The bronchoscopy showed very irritated and inflamed lungs (not a surprise after spending 4 days at a bacterial laden, steamy, indoor water park). The cultures did grow h. influenza which is a common respiratory bug, so we treated that with antibiotics. Unfortuantely his lower left lung is still collapsed and is now showing some scaring so the pulmonologist started him on albuterol and nebulized saline treatments twice a day, along with chest percussions to keep mucous loose in his lungs so he is less prone to infections. It's time consuming, but he's very cooperative, and that makes it bearable. The GI probe was supposed to stay in place for 24 hours, but only made it about 6 hours before Aiden miraculously manuevered his arm cuffs to pull it out of his nose. We had just picked up Kyle and Cambrie from school and were driving down a busy road in driving rain when it happened. Kyle saw it happen and is now traumatized for life. I had to find a place to pull over and remove all the tape holding it onto his face so that he wouldn't destroy what I believe is probably a very expensive machine. The tape coming off hurt him more that pulling the tube out of his nose from his stomach. He was screaming, Kyle and Cambrie were both crying, and I was standing in the driving rain trying not to cry myself. Not my proudest moment, but at least I can laugh about it now. Thankfully the probe was in long enough to get a reading showing that he indeed does have acid reflux, and probably will the rest of his life. Thankfully, it is very treatable, and we will continue to do so. The gastroenterologist also took cultures from his stomach and determined he had a bacteria in his stomach called h. pylori. This bacteria doesn't cause the acid reflux, but can lead to stomach cancer if not treated. So we tacked on another antibiotic to treat that. Thankfully follow up stool tests show that treatment was successful. The ENT placed his ear tubes successfully and also did a little exploring of the structure of his nose and throat. He discovered a small cleft in the back of his throat that might be contributing to his aspirating, but wanted to wait for a follow-up swallow study to address that. So we've had no ear infections (yah!!) and only one respiratory infection since November. We saw the "team" of doctors again in January. GI has released us for now knowing we will continue to treat the acid reflux (very exciting being released from at least one department at Vanderbilt). ENT and pulmonologist wanted to repeat swallow study to see if he is still aspirating liquids now that he is older. Pulmonologist added steroid to his daily routines to hopefully keep airways less inflamed and therefore keep things moving in his lungs. He also made mention of possible removal of the lower lobe of his lung as the x-ray showed more scaring. This of course was something I didn't want to hear, although expected from the beginning. The original plan was to wait and see if things would improve and heal in that area, but scaring indicates just the opposite. It would be a major operation, but would be so good for him in the long run. We would eliminate the common source of his pneumonias as well as the need for the inhalers and nebulizer treatments. So, we had the swallow study last week and unfortunately he is still aspirating really thin liquids. It's better than before and we don't have to thicken as much, but still a problem. So now the plan is for the ENT to inject a gel foam in the cleft in his throat that lasts about 3 weeks. We will repeat the swallow study during this time to determine if this is why he aspirates. If it's successful, they will place a permanent flap over the cleft, and hopefully eliminate the aspirating all together. If it doesn't work, we will continue thickening liquids until he is old enough to control his drinking better. Sorry for all the medical updates, but I really want a record of Aiden's medical procedures. As you can imagine it's very difficult to keep up with all of it.

Aiden also began speech therapy in December at Vanderbilt (our home away from home). He goes every other Monday. He is doing very well, and the speech pathologist is very pleased with his progress. After 6 months we will do a test that will determine if he is "structurally" capable of making all of the sounds. Having a cleft palate (although reparied) predisposes him to structural difficulties in forming sounds properly. The results of this test could mean another surgery for our little guy. The ENT wanted to go ahead and close his palate further in the back, but our plastic surgeon wanted to do therapy and the test before we put him through another surgery. We agree with him and are thankful he is conservative. He will be doing the "nose job" on Aiden sometime later this year which will help our little guy breathe so much better through his nose. He has a very flat nose, and that will only get worse as he grows. We are just so thankful that he is happy and oblivious to all of these things. He loves going to the doctor and has no fears whatsoever. We also feel very blessed that we have the resources of a great children's hospital so close to us.

Regardless of all the medical "yuck" we've been through over the last few months, life has been great and we've had a lot of fun times. God continues to provide us with daily blessings and more that what we need or deserve. His mercies are new every morning and for that we are thankful. When He called us to this journey, He never said it would be an easy one. But that doesn't excuse us from listening and obeying Him. I think it's easy to think if we do what God wants us to do, he will bless us by making everything nice and easy. But we aren't put here to be comfortable (even though that's a nice feeling). We are put here to accomplish His purpose for our lives, and even though I don't like to admit it, that usually means it's not comfortable. I imagine there are those that wonder if Eddie and I would have adopted Aiden if we knew what his medical future held. I would do it again a hundred times over. He is our son, and God knew that well before we did. The medical stuff can be overwhelming at times, but that's because I feel like I'm not in control. The reality is that I'm never in control even when I think I am. It just helps me rely on Him all the more. And honestly I need that reminder quite frequently. We appreciate your continued prayers for Aiden over the next several months, whatever they hold for us.

Meeting Nashville Predators Patric Hornqvist and Kevin Klein

Making cookies for Santa

Daily nebulizer treatments

Christmas picture

Wave pool at Wilderness in Smokies

Roller skating for first time at Cambrie's b-day party

Summertime

Seems as if I'm managing an update about every 2 months, but hey that's our life around here. Cambrie graduated from kindergarten at the end of May. We are so proud of how far she has come this year after a crazy start. She was only in school for a few weeks before we left for China, and she missed over 2 weeks. Kyle finished up a great year with several awards. He had to work hard that first quarter to catch up after missing 2 weeks of 5th grade. But he managed to reach his goals and even made Principal's list all 4 quarters. Aiden is loving life despite 2 surgeries and numerous doctor visits. It amazes me that he will just walk right back with whatever nurse comes to get us. I would think after all he has been through that he would be scared of medical people. His personality is such a blessing. I think he will definately accomplish whatever he sets his mind to.

We have had a busy summer so far. We met all of Eddie's family in Myrtle Beach the first week of June. The kids had a blast with their cousins, and Aiden loved spending the whole week in water. He wasn't too sure about the loud ocean, but loved our pool at the house. Cambrie taught herself to swim with some instruction from her big cousin Blayne, so she was thrilled. Kyle and Eddie went off to church camp this past week and had a blast. Actually I picked Eddie up on Tues night b/c he had to be at work on Wednesday. Kyle came home today looking pretty worn down, but probably would have stayed another week.

We are thankful to have surgeries behind us for the moment. Aiden's mouth healed quickly without much discomfort, and the circumcision only seemed to bother him during a diaper change. Glad to have them out of the way. During his bronchoscopy and ct scan they discovered that he had a lot of "junk" in his lungs, so we had a swallow study done. We found that he is apsirating when he drinks liquids because he drinks so fast and overpowers his muscles. We now have to thicken all liquids and have removed the valves from all his sippy cups hoping to slow down how fast he drinks. Can I just say I have little spots all over my floors and furniture from the drippage out of the cups. But at least it matches the rest of my messy house. He has also had several ear infections, so tubes may be in our near future. The pulmonologist also suspects he may have acid reflux based on the condition of his lungs, so we are treating that with medicine. Fortunately our pulmonologist decided Aiden was a perfect candidate for a special clinic at Vanderbilt that will involve a pulmonologist, a gastroenterologist, and an ENT. When we go, we will see all 3 doctors together that will coordinate his care. Makes sense to me, and it saves us several trips as well as peace of mind that they are all working together. Our first visit will be in August. He has also been referred for a hearing evaluation because he failed the test in the pediatrician's office. Cambrie failed this as well, and ended up being fine when we had her tested further. But since he is waiting to start speech therapy, this has to be ruled out first so they know how to work with him. Gotta tell you that even with all these things going on, you would never know it if you saw him. He is the happiest guy! He smiles all the time and says hi to anyone who glances his way.

As of now, we don't have any more major plans for summer. Just looking forward to some quiet nights and weekends at home, knowing that will all change when school starts in about a month. Thanks for checking in on us!

Kelly

Pictures

Happy 3rd Birthday!!!!!

Just wanted to post a quick shout out to our big 3 yr old boy today. We will have his party tomorrow night, but he did get a new Thomas the Train motorized train and a Thomas beach chair this morning. He was very excited! Can't wait to post pictures of his first birthday as a part of our family. We love you Aiden!

Surgery Postponed

Thought I would update and let everyone know that Aiden's surgery was postponed by the anesthesiologist at the last second. While I completely understand his concern about the lung issue, he did not treat us very nicely, and implied we needed to consider our son's safety before putting him through elective surgery. Well, yes the circumcision is elective, but his dental surgery is not an option at this point. We just wanted to knock out both procedures while he is under anesthesia so he won't have to endure it twice. So we will proceed as planned with the bronchoscopy and CT scan next month (which of course requires anesthesia), and then reschedule the other after we know for sure what we are dealing with in his lung. Thanks for the prayers, and we will let you know when we have some news. I'm also adding a few pictures we had taken last week.

Kelly

Update

Hey, yes we are still alive, but extremely busy. We had an awesome holiday season with family and friends. Aiden loved everything about Christmas, but especially his Thomas the Train. It was one of the first gifts he opened, and he carried it around all day and even went to sleep with it that night. It seems January was the month of sickness in our house. I was the only one fortunate enough to have escaped the flu. Eddie had it first and managed to develop a lower respiratory infection as well. Then Aiden had an ear infection that required 3 rounds of different antibiotics to knock it out. During these visits the doctor was concerned about pneumonia as well, so she ordered a chest x-ray. She called last week to say they had received the final report of the x-ray and that there was a suspicious area in his lung, and that she compared the x-ray to the one he had in September, and the spot was there then as well. They originally thought it was just pneumonia, but she wanted us to see a pediatric pulmonologist to be sure, especially since he is scheduled for surgery this Friday. We were fortunate to get his dental surgery piggy-backed onto his circumcision surgery so he would only have to be put to sleep once. He will probably not speak to us for awhile after Friday. Anyway, so the pulmonologist felt like he has some atelectasis (small collapse of his lung) in that area. They want to do a bronchoscopy and a CT scan to determine the cause, but are going to wait until after he is recovered from this surgery. Then I received a call yesterday from the pulmonologist saying that she had presented Aiden's x-rays in their grand rounds and the consensus was that there is an enlarged blood vessel that is obstucting his lung and causing the atelectasis. So now we will be having an echocardiogram on Friday before the surgery to be sure his heart is ok. We're pretty overwhelmed at this point, and we just feel so bad for our little man. He is such a trooper, and is so happy through all of this. However, we are thankful for good physicians that have gone the extra mile to be sure he is ok for surgery. I'm so glad his pediatrician decided to look at that previous x-ray, instead of writing it off to pneumonia. We feel blessed as well to be at Vanderbilt for his treatment. So we definately covet your prayers over the next few days and even months. We know God is not surprised by any of this, and that Aiden is, as he has always been, in His hands. I will try to update after the surgery and let you know how he is doing.

Kyle and Cambrie are doing well with school. Kyle is involved with several extra curricular activities at school, as usual, so that keeps us running back and forth a lot. Thankfully we are taking the spring season off as far as sports go, so that will afford us some much needed rest on the weekends and weeknights. We are looking forward to a short trip to St. Loius for spring break. We went to Indianapolis last year for a few days, and that was just the right amount of time to get away but not exhaust us. Kyle is especially looking forward to going up in the Arch. I have graciously volunteered to stay with Aiden at the bottom. I don't care for heights, not to mention the swaying that sometimes occurs at the top. We also plan to visit the zoo, and a few fun museums. It will be our first official vacation as a family of 5, so we are excited.

Last night we had some professional photos taken of Aiden and the whole family, so I hope to post some of those on here when I get a chance. They turned out really nice, but I spent a fortune on them. I was just amazed that the photographer was able to get some shots of all 3 children looking at the same time. Not an easy feat!

Well, that's our news for now. I'm sure the next few weeks will be just as crazy as the last 5 months, but we wouldn't change a thing. We are so thankful for our blessings.

Kelly

Decorating cookies for Santa

Christmas morning
Snow on Christmas Day