Tuesday, March 31, 2009
2 'Creon 5' enzymes with every meal (16-20 per day) mixed with applesauce
1/8 teaspoon of salt (we mix this in with his applesauce)
2 treatments of Albuterol through the use of a nebulizer, 10 mins each session
2 sessions of CPTs (chest percussion therapies) about 15 mins each
It has been a difficult couple of days around here. Starting the nebulizers was pretty traumatic for both Casey and myself, it makes it even more real that our son has this horrible disease. The hardest part is feeling like "mom and dad are supposed to make you better when you are sick" but all we can do is make him feel better, we can't take it away for good. I compare it to taking cold medications, they make the effects of a cold feel better but they don't make the actual cold go away. We keep our hopes up knowing that there potentially could be some medication for him in the next few years that will benefit him tremendously, but those are all several years into the future. It is extremely scary not knowing how "severe" Gavin's CF will be. Will he be a kid consistently in and out of hospitals? Will he need a port? Will he need a feeding tube? Will he be stuck with a constant cough? Will he have sinus problems? When will we start to see lung issues? It is so difficult dealing with a disease that differs greatly between patients. We spent nine months so excited for the future, and now there are days when I just dread the future because of so many scary unknowns.
The first neb treatment we tried while Gavin was awake. That did not work out well. For the first minute or so he just stared at me with these huge scared eyes, it broke my heart. Then he screamed the remaining time. Today, we tried it while he was sleeping and that worked much better. When I first held it up to his face his opened his eyes a bit and we were worried that he would wake up, but he fell right back asleep for the entire treatment. That was much easier for both Gavin and myself. He still does really well while we give him his CPTs. The only time he gets frustrated is when he cannot see anything while we do the treatments on his side and he faces the couch cushion. We've tried putting colorful objects in front of him, but he is only happy when he can see all around the room at his leisure (or just "his pictures" ha)
We try to remind ourselves that our doctors/nurses goal is for Gavin to live a full lifespan, but that is difficult to remember in the day-to-day moments.
Casey is still on the job hunt but has had several interviews. We are just crossing our fingers that one of these works out AND that they have awesome insurance :)
Keep praying for us!
Posted by Jen at 8:56 AM
Thursday, March 26, 2009
Gavin now uses a nebulizer with Albuterol two times a day, right before we do his chest percussion treatments. This will help to open up his airways making his CPTs more effective. No worries, all of this is still just preventative and also to get him used to the treatments. I cannot imagine trying to start all of this with a toddler, it would be impossible! This will all be Gavin's "normal" and he'll never know life without CPTs and his nebs (unless there is a cure someday!)
Once again, our nurse reminded us that kids born with CF today that are treated at the U of MN are expected to live a full life span. It is so reassuring to hear this! We now understand why people call their CF teams and other CF families their second family. Gavin has seen his doctors more already than most of his family!
Posted by Jen at 4:56 PM
Monday, March 23, 2009
Another happy note...we got to see the Stanley Cup today. Casey's family friend Sean Podein played for the Colorado Avalanche (a NHL team for all of you that don't follow hockey) when they won the Stanley Cup Finals and he brought the trophy to the St. Louis Park Rec Center. It was pretty cool to see! We thought about kissing the cup, but then I saw about a dozen other people kiss it before me, and the idea didn't sound so appealing anymore, gross! We ended up putting Gavin IN the cup! It was so funny!
We will be visiting our CF center again on Thursday. Hopefully it is uneventful because that means things are still going well! Cross your fingers that Gavin has been gaining enough weight! He is already wearing 3 month sized clothes (sigh) and he doesn't look like a newborn anymore.
Keep praying for us!!!
Posted by Jen at 7:37 PM
Sunday, March 22, 2009
Thanks so much for the donations raised for our walk so far! Please keep those donations coming! We NEED a cure or better treatments for our precious little man, and all the other kids out there affected with CF, before its too late!
Posted by Jen at 9:05 AM
Tuesday, March 17, 2009
Posted by Jen at 3:08 PM
Monday, March 16, 2009
Yesterday, we headed out to Eagan to visit with some of my extended family. My dad's cousin Scott has tickets to the MN High School Hockey state tournament and flies in from Seattle each year to watch the events. Here, Gavin got to meet his Great-Grandma Vanderpool, Great-Uncle Bruce, Great-Great-Aunt Colleen along with several other members of the family. He was very well behaved and was only fussy when he got hungry, we are so lucky to have such an easy baby! We don't get together with this part of the family very often so it was good to see everyone and catch up!
Gavin becomes more and more alert each day! It is crazy how fast he has already grown! He has lost the majority of the hair he was born with. Well...he's lost the hair on top of his head but has kept it in the back so he's sporting somewhat of a mullet! As they say, business up front and party in the rear! Here are some new pictures...
Here are a couple of short video clips!
Posted by Jen at 9:51 AM
Thursday, March 12, 2009
We learned today that there is a clinical research study on his particular kind of CF that works with the pancreas, allowing it to absorb fat. Basically, his pancreas creates the correct kind of enzymes but they are not able to move through the cell walls. The research studied a medication that allows these enzymes to move through the cell walls and it sounds like they have gotten success from these trials. (The U of M has been participating in this trial) It will be several years of more testing before the FDA would allow any testing done on children or before they will approve the drug for general CF patient use but it was very uplifting to hear this news! He has the second most common kind of CF but it still is a rare form of disease so we are thrilled that this study is being performed on his particular strand of the disease. If we get the chance we will definitely enroll Gavin in this study. From what we understand, this medication would also help to prevent the mucus from building up in his body which would be a great thing for his lungs. The study is called CFTR Modulation and for more info follow this link: http://www.cff.org/research/DrugDevelopmentPipeline/#CFTR_MODULATION
We have another appointment two weeks from today for our nutritionist Kathy to decide if we need to adjust Gavin's medication more. He may potentially need to take a medication that keeps the acid in his body (which is normal) from breaking down the enzymes while he digests them but we won't know that until his next appointment.
For those of you curious, if Gavin gets a cold or flu etc. we don't have to rush him to the doctor immediately. Today, Dr. Laguna told us that we need to call if Gavin has a cough that persists more than two days and they will put him on an antibiotic that will prevent any bacteria from creating infections due to this cough and the build up of mucus that occurs when you are sick. I asked about his body becoming immune to antibiotics and Dr. Laguna told us that they save the "big guns" for very serious infections (if he needed to go into the hospital etc) and they have many kinds of antibiotics to choose from which helps to prevent any immunity.
We will start Gavin on solid foods when he is around 5 or 6 months. We will start with rice cereal to see how his body digests solids and how we need to adjust his enzymes at that time. (His enzyme intake will always be based on his height/weight ratio) Then we will move to meats because of their high protein levels and after that we will try out fruits and veggies. Kids with CF need to eat 50-100 percent more calories than a "normal" child so this lucky guy will be able to eat food packed with butter, salt etc that would cause any of us to become obese. We also asked when we do and don't need to give Gavin enzymes when he gets older. If he just munches on a handful of pretzels or Cheerios we don't need to give him enzymes because of their low fat content. However he will need to take his enzymes before having a bottle of milk, especially with whole milk because of the high fat content. Out of curiousity we asked what he does if he drinks beer when he gets older, and she told us that he won't need to take pills for that either but he will if he decides to go on a food run at 2 a.m. haha.
This may sound horrible, but each time we go to the U we see several kids that are in wheelchairs, deformed, on oxygen etc. and while we are devastated that our little guy suffers from CF we thank God that it is something that can be maintained and we will have him here for a very long time. It is fun sitting in the waiting room and watching all of the kids walking and playing around, it just shows us how resilient kids are and that none of them let their illnesses slow them down!
Posted by Jen at 12:04 PM
Wednesday, March 11, 2009
Posted by Jen at 1:36 PM
Tuesday, March 10, 2009
We spent the last weekend in Rochester (our first weekend away from home!) and Gavin got to meet his Great Grandpa and Grandma Brown. It's always exciting to see four generations together!
Great Grandpa & Grandma Brown
Here are some other family members that Gavin has met so far...
Oma Vanderpool (Jen's Mom)
(Jen's) Cousin Lacey
I have copied and pasted the update from our other blog about Gavin's CF below. If you want to look more into this disease check out www.CFF.org
We have had two appointments at the University of MN since we last wrote and we met our wonderful doctors and heard great news. Kids born with CF today are expected to live a normal lifespan as long as they keep up with their medications and treatments! It was such a relief to hear that! So far we have met his pulminologist (Dr. Terri Laguna), his gene counselor, two of his nurses, his respiratory therapist and his nutritionist. We are still working on keeping them all straight! What we have learned is that his CF prevents his pancreas from absorbing the fat and his body does not reabsorb salt which is the cause of the mucus buildups and potential lung issues. Since 2006, they have routinely checked babies for this disease so instead of treating a child who is diagnosed later in life and has severe issues, they are trying to prevent these issues from ever occurring. We will not know the severity of Gavin's CF until he gets older but his outlook at this point looks wonderful!
Right now for his treatments we give him enzymes (which are a broken up capsule mixed with applesauce) each time he eats. This allows his body to absorb the fat and calories he needs to allow him to gain weight. We also do chest taps (which help to break up mucus and prevent bacteria from growing and causing an infection) in the morning and in the evening. Once Gavin turns one he will wear a vest (which was invented at the U! Go Gophs!) that will fill up with air and perform his chest taps so we don't have to do them manually. Right now Gavin loves his chest taps! He tends to fall asleep when we do them, it's pretty funny. Luckily this does not affect his immune system so while we need to be cautious about colds/flus/bronchitis etc that could potentially impact his lungs, he will be able to fight off these viruses just like any other kid.
Gavin will be raised just like any other kid, he will just need to do a few extra things everyday to allow him to stay healthy. He will be able to play sports, run, play and get dirty just like every other little boy. We are VERY lucky to be living in Minnesota, the U is one of the best, if not the best, place to treat CF. They have one of the largest CF centers, meaning that all of his doctors work with CF and CF only. We are blessed to have the most beautiful boy in the world and we love him to pieces!
Posted by Jen at 5:54 AM