Another Day at Clinic...

CF Appointment:

Great news: 100% O2 sat level, lungs sounded great, got the vest ordered and we will receive it tomorrow, we are stopping the albuterol before hyper-sal and if no cough arises then in 12 days we will also be stopping pulmozyme but he is satying on hyper-sal, gained 1lb 3oz so he is 22lbs 3oz....i am sooo happy!!

Allergist Appointment:

Great news: NO milk allergy!!!!!!!! but we are doing some stool tests to try and figure out why they are still sooo loose!! and may be going to a GI dr if we have no answers from that! Don't think it is an enzyme issue becuase his poop is not oily and greasy and he is gaining so good so we will see!!

I am one happy momma :)

Lunch with Exec Director:

Went awesome as well! Nice to meet someone from the foundation to put a face with it! I learned today that the foundation was started by some parents who wanted to find a cure for CF (I had no idea who started it) and that they had no idea what the underlying problem was with CF until 1994 when Pulmozyme came out!!

Another Day spent Driving and Waiting....

So today was the monthly clinic visit and it was a GREAT one other than the driving and waiting. First things first, apparently a nurse who worked at the clinic when we first started would always enter data and mess up things probably because she did not double check herself  and Keagan's doctor fired her I guess based on the comment he made today. So on the form I bring home from every visit had a mistake on it and that mistake was the wrong mutation combo for Keagan. Keagan is a DOUBLE DELTA F508'er so he DOES NOT  have the 621+1G>T mutation. I am kind of relieved from this since there is no information on how severe CF can be with the 621+1G>T mutation! And unfortunately, we did not get to see the allergist today to figure out whether or not he has a milk allergy but we will see her when we go back on March 16th! So clinic details....

Respiratory:
    - nothing!!! even with a runny nose and cough (I know it can turn into something for you negative thinkers)

Nutrition:
    - 28 7/8" long....almost an inch in a month
    - 21 lbs!!!!!! This is a 2.5 lb weight gain in a month!
    - continue getting him FAT lol
    - in the 50th-75th percentile for weight for length ratio!!!!

What did I learn today?
     - anything with a strong scent will irritate his airways
     - pools, rivers, and lakes are all ok...YES!!!!
     - will prob start pediasure when he is ONE
     - and in the summer will probably start giving him gatorade with added salt when we spend the day outside

GOAL: When Keagan begins walking/running, we will spend an hour-two hours running and playing outside to begin his active lifestyle to keep him healthy!

CF and its Drugs

So news juat broke that a new medicine is going for FDA approval!! The medicine right now is VX-770 but I am thinking that it will prob get changed to something different. This medicine is only for people with certain CF mutations, so Keagan will not benefit from this medicine. VX-770 will only benefit 4% of the people who have CF. This medication will help improve overall health of the CF patients with the mutations Delta F508 and G551D. The research company who developed this med has more in the works to help other CF'ers with other mutations. I know that one day the awesome researchers will have something to make Keagan breathe easier, gain weight easier, and taste less salty! But unfortunately, CF research is not government funded so unless people like you donate money that one day may never come for Keagan or the 30,000 other people in the U.S and there are more worldwide. So if you haven't already helped to make this easier by donating to the CFF through someone's Grreat Strides team page or the CFF directly then please do so. One day we will together make CF stand for CURE FOUND! Thank you to everyone who already supports the CFF! If you would like to help Keagan's Great Strides team then you may do one of the following:

1) go to www.cff.org/great_strides/krystalcovington and doante
2) order a team shirt $15 for adults and $10 for youth/toddler e-mail me kscott0305@gmail.com
3) my mom is selling CF bracelets and keychains e-mail he kitty19705@gmail.com

or you can donate directly to the foundation at http://www.cff.org/

THANKS AGAIN FOR ALL THE SUPPORT AND LOVE! KEAGAN CAN'T DO IT WITHOUT ALL OF US!

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!

My Oh My....clinic 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 old...lol! 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...

Respiratory
     - 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
Nutrition
     - 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!

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.....

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 have...it is in HIS hands!!