Friday, September 30, 2011

September Quarterly Appointment Update on Ashton and Family Update

I so rarely update the family blog, I think because I started it for updates on Ashton and almost all of her appointments or blessedly uneventful!  Still, we had an appointment this week, and though it was not necessarily eventful, there are updates.  First and foremost she is an extremely healthy little girl!

When we got there and got in a room and they came and got her to measure her again because they said their equipment must have malfunctioned.  I assumed it was saying she was smaller than she should be. Come to find out, after measuring four times on at least 2 different machines, she grew 2 and 1/2 inches in 3 months!  Wow!  I thought those pjs I bought at the beginning of the summer shrunk, lol!

She gained the weight she should have also, but because her height is now above average and her weight is average, her BMI has dropped to the 45th percentile.  Even though she is pancreatic sufficient, they still like to see her at or above the 50th percentile.  Right now it is the lowest it has ever been.  They are not worried because the main factor is the huge growth spurt and she is not showing signs of insufficiency, but they did say not worry about restricting calories or fat, and to even add them liberally!  They sugested all the things that are suggested to kids that are pancreatic insufficient, including full fat butter and sour cream in mashed potatoes, extra cheese and powedered milk added to whatever I can add it to, and anything else I can come up with to add fat and calories.  They suggested 2,000 calories a day, which is the norm for adults! 

I had also been reading about CF kids needing more salt in their diet because they lose more when they sweat.  No one ever said anything about this to us, so I brought it up to the nutritionist.  She said yes, to give plenty of salty snacks, use the salt shaker liberally, and even to add salt to pretzels, crackers, and popcorn!  Poor Jackson is going to feel so mistreated.

We had the vitamin discussion again as well.  I have not been able to get her to take the CF vitamin in liquid form since she was very, very young, so the consensus has been to have her take a whole chewable off the shelf like a Flintstone (the recommended dose for her age is a half.)  Well, the only issue on the results of her annual blood work, which they drew blood for in June, was that her vitamin D was a little low.  They like it to be 30 and it was 29.  Soooo, they tell me they have a chewable CF vitamin!  Why did someone not tell me that when we began trying to figure out what to do a year ago!  She could chew!  Anyway, she is taking it now and all seems good. 

She also had a chest x-ray this time and though we do not have the result, she did a great job.  She sat right where she was supposed to and said CHEESE!  LOL!  She also sat and opened her mouth for her cough culture and they said even the big kids fight them on that.  The only other change is the addition of a cough regime to her vest treatment just to move any mucus that may be loosened during the treatment. 

As a reward for how great she did she got her ears pierced.  I think that was the most traumatic part of the whole day, but she wanted it even after she knew it was gonna hurt.  She cried, but I think it was more traumatic for me!

In other news, Jackson is doing Cub Scouts and Flag Football.  Flag football will be over in a few weeks and he wants to do pads next year.  Apparently he can and his daddy said okay....I think I will need a prescription.  He LOVES Cub Scouts and the whole family went on his first Cub Scout family campout.  It was fun, and I hope he continues to enjoy scouting.  It is a great program.  First grade is going well, though he nor I enjoy the homework he has each night.  We have had a lot of lessons on having to do things you do not want to do sometimes. 

I hope all is well with your families.  Until next time:)

Sunday, March 20, 2011

Updates and Strange Reminders

I haven't blogged here in a long time, but this is where I blog about family and Ashton's journey with CF.  I thought some of you might be interested in the new doctors and how things are since we moved to Knoxville.  Ashton's health continues to be outstanding, amazing even.  There are reminders, however, that everything is not exactly right.  These are things that would not necessarily lead us to believe she had CF if we did not know, but since we do know, we are able to recognize them for what they are.  Her morning cough is probably not just allergies or sinus drainage.  Her boughts with mild constipation and occassional vomiting are probably very, very mild CF related symptoms.  We know we are so, so blessed that she is such a healthy little girl. 

This weekend our family went to the American Museum of Science and Energy in Oak Ridge.  It was free admission days so we took advantage.  There was an exhibit where  you placed one hand on an aluminum plate and one hand on a copper plate and the electricity from your body made a needle move.  Then you were supposed to breath on your hands to make them sweat, and the salt on  your skin would make more electrcity go through and the needle would move more.  Neat little gadget, and Aaron and I both did it with the needle moving as it should.  Aaron put Ashton's little hands up there and the needle went off the chart.  If you'll remember from what I wrote at the beginning, one of the ways they diagnose CF is by the increased salt content in the sweat.  A strange reminder that things are not exactly normal. 

As far as East Tennessee Children's hospital... AWESOME.  The doctors are much more aggressive.  This could prove to be not so great, but for now, we are happy.  They told us that kids as healthy as Ashton worry them because they can slip through the cracks until they are really sick.  They do not plan to let that happen.  So far they have only added a nebulizer treatment to her normal treatment regime.  It is a hypertonic saline solution (yes, that is salt water) that she inhales as a mist twice per day with her regular inhaler and vest treatment.  She hates it, but they say they have seen kids go from completely junky lungs to completely clear after six months of this, so they put everyone on it.  I'm game.  They also do a bronch once a  year where they take a sample from her lungs to make sure they catch anything that could be growing ASAP. 

A nice side treat is that they have a closet full of toys in the waiting room and one lady is in charge of them.  She hands toys out and keep them clean and that way everyone can play and no one catches germs from the toys.  She also sets up the exam room with toys, colors, stickers, etc.  Last time Jackson went and they made sure he had plenty to keep him occupied as well.  It made clinic day so much easier. 

Jackson is doing GREAT in school here and is all about science lately.  We are trying to nurture that.  We love Knoxville, but we are so thankful for technology that keeps us connected to each of you...we love all of you.    Hopefully it will not be so long until next time.