Wednesday, January 26, 2011

From this DAY Forward...

So I have placed a new concept into our lives. This new concept comes as for the past 9 months I have been completely wrong about what gene mutations Keagan has. I have been thinking this whole time he had two copies of the most common mutation which is delta F508, but he actually has one copy of delta F508 and a copy of a rare mutation 621+1G>T. I have searched for info on the rare mutation and cannot find anything. I even went as far as contacting my genetics professor from college and he couldn't even find anything correlating this mutation with symptoms of CF. I do know that the 621+1G>T is the second most common mutation found in French-Canadians! I also know that the rare mutation can affect the pancreas pretty severely which i guess is true because Keagan does take almost double the amount of enzymes for his weight so he is pretty pancreatic insuffiecient (pancreass does NOT naturally produce digestive enzymes at ALL). I do know that the rare mutation is from my side of the family becuase my husband has a 5 year old cousin with CF and he has two copies of the delta F508. All I know is that his combination of mutations is like all other combos of mutations for CF meaning that there is no set in stone symptoms and each patient can have a varying degree of severity. So his could be very mild with little to no complications or it can become very severe. So this is where the new concept of our lives come into play: WE ARE GOING TO LIVE IN TODAY AND ENJOY IT WITH NO WORRIES OF THE TOMORROWS UNTIL WE GET THERE!

Thursday, January 20, 2011

My Oh days!

Today was clinic day! Clinic days are exhausting! We left home at 11:30 am this morning and just got home at 8:15 pm. We drive 2.5 hours there, have clinic for 3 hours, and drive 2.5 hours home! Our clinic consists of talking with nurse (weight, height, blah blah blah), waiting, talk to nutritionist, waiting some more, respiratory therapist (throat swab), waiting some more, resident doctor, oh and waiting some more, then finally Keagan's actual doctor. We only talk to each person for maybe 10 min so you can only imagine how much waiting we do and stare at the blue walls. I mean there is only so much to do in a room with a 9 month! On a side note: So I asked Keagan's dr about this new thing I have heard about called salt rooms. These rooms are huge rooms filled with salt and they have a generator that blows salty air throughout the room and the people just sit there and breathe in salt. He said "its a bunch of hooie" haha meaning a bunch of nothing! He said if you want that then just ask your/your child's doctor for hypertonic saline! Alright so back to clinic...

     - lungs had some slight crackles on both sides in the upper lobes
     - ears are slightly red and irritated
     - still coughing
     - throat swab results pending....will call if anything grows
     - weight 18lbs 7oz
     - dropped below 50th%ile
     - has gained 1lb 10oz in a month
     - height 28"

No real med changes! The doctor lowered the units of enzymes so instead of one capsule being 20,000 units they are now 10,000 units. So his doctor said he can take as many as 4 with each meal and to give him lots of butter so we can get his weight back on track! We are still doing all soy stuff but next month when we go back we are going to see an allergist to make sure Keagan does not have a milk allergy (his dr suspects it). He also prescribed Keagan a laxative because it is good for his poop to be formed but Keagan was having a hard time getting it out so I thought he was constipated. The dr said if you lower the amount of enzymes to make it easier for him to poop then you are basically just using the fat he doesn't absorb as a laxative....which is BAD cuz we want them to absorb their fat! It is just hard for them to get poop cuz of the sticky mucus.

On another side note:
I also learned today that all kids have something called FOOD NEOPHOBIA. It is basically where they are scared of new foods. There are studies that show you may have to offer a new food up to 15 times, yes 15, to get them to actually eat it and like it! The nutritionist said you should offer new foods to them even if they throw it and then keep offering it and they will eventually taste a little bit and it will be more and more each time they are offered it until they eventually start eating it. I gave Keagan a pancake the other night and it ended up behind his head! He LOVES to play with new foods! Here is a list of some good fatty foods for infants (9 months and older) and toddlers:
High Calorie Finger Foods
     - noodles with alfredo sauce
     - grated whole milk cheese
     - crackers with cheese or peanut butter
     - blueberry muffins
     - pancakes or waffles
     - sliced/mashed avocado
     - soft-cooked vegetables with butter and cheese
     - scrambled eggs with cream and cheese
     - tuna or egg salad sandwich with mayonnaise
     - breaded fish or fish sticks
High Calorie Spoon Thick Foods
     - applesauce mixed with cream
     - ice cream
     - oatmeal/grits with cream, butter, and brown sugar
     - whole milk cottage cheese or yogurt
     - pudding made with whole milk and cream
     - mashed potatoes with butter, gravy, and sour cream  <----Keagan's Fav
     - thick cream soups (potato, cheese, and broccoli)
     - refried beans

Overall a good clinic visit! Message me with any questions and comments are always welcomed!

Monday, January 10, 2011

A little Peek into Keagan's daily LIFE....

Just wanted to post Keagan's current feeding and treatment schedule. You may look at Keagan's treatment and think...WOW! that's a lot. But really his treatments are not a lot compared to other CF babies and as he gets older the list will more than likely only grow!
9 am: wake up and eats
          - 1 1/2 enzymes in applesauce before meal
          - 2 teaspoons of Omeprazole (reflux med compounded into liquid)
          - 1 mL of Aquadeks (multivitamin: A, D, K, and E)
          - eats: cereal mixed w/ fruit baby food, 2 teaspoons butter and salt, 7oz formula
10 am: breathing treatments
          - 4 puffs albuterol inhaler with spacer (~5 min)
          - 7% hypertonic saline via nebulizer (~15 min)
          - Pulmozyme via nebulizer (~10 min)
          - Manual CPT (beating on chest ~20 min)
10:30-11:30 am: napping
11:30 am-12 pm: play time
12 pm: eats
          - 1 1/2 enzymes in applesauce before meal
          - 1 jar veggie baby food mixed with 2 teaspoons butter, 5oz formula
12:30-1:30 pm: play time
1:30-2:30 pm: napping
3 pm: eats
          - 1 1/2 enzymes in applesauce before meal
          - 1 jar of fruit/fruit smoothie baby food with 2 teaspoons butter, 5 oz formula
3:30-6 pm: play time
6 pm: eats
          - 1 1/2 enzymes in applesauce before meal
          - 2 teaspoons of Omeprazole (reflux med compounded into liquid)
          - 1 jar of veggie with meat baby food with 2 teaspoons butter and salt, 5 oz formula
6:30-7 pm: play time
7 pm: bath time
7:30-8 pm: play time
8 pm: breathing treatments
         - 4 puffs albuterol inhaler with spacer (~5 min)
         - 7% hypertonic saline via nebulizer (~15 min)
         - Manual CPT (beating on chest ~20 min)
8:45 pm: eats
         - 1 1/2 enzymes in applesauce before meal
         - 4 oz formula
9:15 pm: bed time
total: 7 1/2 enzymes (pills), 2-2 1/2 hours breathing treaments, 21 mL of liquid meds.....
Like I said above, you may think this is a lot but Keagan's treaments and meds barely compare to the treatment of other CF babies and this list/amount of meds will only grow as he gets older.....

Monday, January 3, 2011

A New Year....

So it's a new year!! 2010 gave me one of the best gifts I could have ever asked for and that gift was Keagan! We had a good 8 months in the year of 2010. We had very little complications with CF. The biggest problem we have had with CF is getting the enzymes right. And as you all know if you read my other blogs, Keagan had his first 2 week hospital stay for a "tune-up". But that 2 week stay was the best thing in helping me deal with Keagan's CF and I came out with the best and positive attitude about Keagan having CF. I am very thankful that Keagan only has CF. He can walk and talk. We may have hospital stays here and there but at least he will be able to go home and not have to live out his life in the hospital. It was a real eye opener to stay at a children's hospital for a couple of weeks. I learned that how I see and perceive CF is how Keagan will grow up and see and perceive his disorder. I also learned how comfortable I am in having a child with a disorder. I never hesitate to tell someone that Keagan has CF and to educate them about CF. I still have my moments where I wish I could just feed Keagan without having to do the enzymes or that I didn't have to wake up and get him up 2-3 hours before we had to go somewhere to do treatments but I made a promise to myself and to Keagan that CF will not get in our way of living a normal life! I have discovered that I have a pet peeve... and that is I cannot stand for people to refer to Keagan as not normal. Keagan is normal but he just may not be as healthy. So I prefer for people to say "healthy kids" instead of "normal kids"when they are comparing Keagan to other kids. Although people may not agree but I take him where ever I go. I am not going to not take him out just because he has CF. I am more cautious right now because it is winter but in the spring and summer he goes everywhere I go! I also discovered how caring and understanding our families are of CF. They will not come around Keagan if they are sick or think they may be getting sick! The last thing I am thankful for is that my mom QUIT smoking for Keagan! My mom has smoked since she was a teenager and just put 'em down cold turkey!! Well anyway...I just want other moms to not look at CF as a burden but to be thankful their child is able to live a normal life with the exception of daily treatments and to not be afraid to speak out and educate others about CF. I also want other moms to remember how we perceive their disorder is how they will so remember to stay positive! On a side note, my husband and I have also to decided to try for another one sometime later on this year. I know some people may not agree with the decision but we want another child CF or NOT!!! If we are meant to have two children with CF then that is what we will is in HIS hands!!