Sunday, October 26, 2008

sippy cup

For the past couple of months we have tried multiple times to get Colin to understand the mechanics of the sippy cup. We were just using the normal ones you find at Target that are colorful with a little nozzle on the top and handles on the side. We tried it when he was hungry, when he wasn't hungry (and calmer), and every stage in between. We would give it to him just to play with and get used to and also put a little formula or juice in it to tempt him to put the little nozzle up to his mouth. No such luck.

Our latest attempt was using the Avent attachment for his normal bottle that provides handles and the "feel" for using a sippy cup. Still, eventhough he might grab the handles, he wasn't understanding that we wanted him to raise it to his mouth, tip it up, and let the sweet nectar flow onto his tongue and down his throat.

Despite how it might sound, we weren't desperately trying to get him to use a sippy cup. Really it was just a fun idea that we were hoping he would get the hang of. Just like every step has been, though, we knew one day a light would flick on in his brain and he would know exactly what to do, and do it. Today was that day.

I was drinking some good, old fashioned sweet tea from a glass and Rebecca was sitting next to me with Colin in her lap. As soon as he saw me raise my glass from the table all he wanted was to grab it and "play" with it himself. I let him grasp the rim and the side for a second, then we got an idea. I assembled a small Avent bottle with the attachment and brought it to him (empty). Immediately he stuck the nipple in his mouth, knowing exactly what to do. Being dinner time, we went ahead and prepared his formula, starting with two ounces in this bottle. He downed it in no time with only a little tip at the bottom from Rebecca. As he finished we refilled it until he drank all 10 ounces!

We were so proud of him, and it even got us to thinking about what else is going to be changing as he continues to grow up. All we've known in his life thus far is that we pretty much do everything for him. We are exhausted much of the time and have no idea how parents have multiple babies at a time -- or especially how single moms/dads make it. Then we realized, just like now we will not be holding his bottle for him as he drinks, there will be a day when he can use a spoon and fork (or even a spork) to feed himself real food. Eventually he will be crawling and walking himself without our assistance; he'll take his own baths, brush his own teeth, put on his own clothes, clean his own room, and on and on. Of course, for a while we will still be observing most of these things, but not actually DOing them for him will be such a load off that I can't even imagine.

At the same time, there will be a day when he doesn't need us as much anymore, and a day when he even moves away and starts a family of his own. For now that seems like in the distant future, but I know those days will come before we know. And they WILL come. What we can do now is prepare and shape Colin so that he will have the toolbox he needs for facing this world outside of the protection of Mom and Dad. We love him so much and so excited to continue to watch him grow up into an incredible man.

Wednesday, October 15, 2008

much delayed update

It has been a little over a month since Colin was diagnosed with Cystic Fibrosis. In that time we have received an outpouring of love and prayers from so many of you and we cannot help but feel the hand of God moving in our lives. First and foremost we have asked you to pray that God would give us strength, and He has provided all the strength we need. Not to say that the past month has been easy, nor that the next many years as Colin's parents will always be easy either, but we have a determined trust that the Lord will always provide us with the extra courage, the extra patience, the extra endurance we need to face CF and to face this life he has blessed us with.

Thank you all so very much for everything you have done. Both in thought, prayer and action. We cannot express how much you all mean to us and are grateful to call you all "family."

As for Colin, he is doing extremely well. At his seven month well child exam he weighed in at approx. 14 lb. 12 oz. and a week later at his pulmonologist (CF Dr.) appt. he had gained another half pound or so. In a little over a month's time, that means he gained almost 3 lb. when previously he had been gaining about a pound a month, and not even that recently. His CF Dr. noticed significant improvement in how well the air was moving through his lungs and suggested we could reduce the three breathing treatments we were doing per day down to two for two weeks, and then down to just one. They did test him again for Pseudomonas, which is a CF specific virus, and it is still present in his system, but not causing any illness. In order to knock it out of his system he is on an antibiotic called Gentomicin.

Our life is definitely different than it was a month and a half ago, but I think we are getting adjusted to it all. Below I have sketched out what a normal day looks like for us lately. Bear in mind that this could easily change with every passing week.

Rebecca's sister, Sarah Branigan, has also started an incredible "event" through the popular social networking site, Facebook. Through the event, "65 Roses for Colin," Friends, family and strangers are able to create a rose (any way they choose) in honor of Colin and send it to him. We have received many more than 65 and have heard that there are more on the way. Additionally, Sarah and Rebecca have put together a website to permanently showcase the roses that have been sent in, as well as provide information about Colin, Cystic Fibrosis,, as well as how one can get involved in a local or national campaign. Please check out whenever you get the chance!

A day in the life of the Fishes:

wake up
colin's am breathing treatment (xoponex & pulmocort, then gentomicin)
shower/get dressed
give colin vitamins (once a day)
give colin zantac
give colin enzymes (every feeding)
feed colin
chest physical therapy (pt) - somewhere in there
take colin to nanna's
pick up colin from nanna's
get home
give colin zantac
give colin enzymes
feed colin
chest pt
bedtime story
colin's pm breathing treatment
colin to bed

Of course, this list is oversimplified. However, the best days do seem to be the ones that are the most regimented. We find that Saturdays are the worst at trying to keep his schedule, especially with naps and the like, but he toughs it through, and he loves spending all day with daddy (and mommy).

Also, check out the newest pictures of Colin on Picasa via the link to the left!