Friday, July 24, 2009

A long overdue update…

I know, I know I have been slacking in the blogging department.  I plead the fourth, that is four kids that are keeping me busy with camps, activities, medical appointments, and just life in general. 

I’ll start by updating on Lucy since her life is weighing the heaviest on my brain right now.  On Tuesday we had our repeat swallow study at DuPont with one of their senior speech pathologists who has experience with aspirations and breastfeeding.  I’ll just cut to the chase, the results from this study were the same, possibly a little worse than the first swallow study.  We confirmed again that Lucy silently aspirates all thin liquids even thickened liquids.  She did do better when lying down at a 45 degree angle which is similar to the position that she nurses, but she still aspirated after forty swallows from a Haberman bottle.  We learned that Lucy has a delayed swallow, she does not swallow until she has too much in the back of her mouth, which is contributing to her aspirating. We were told that this combined with her hypotonia are contributing to her swallowing issues.  Here’s the kicker, this speech pathologist advised us to stop breastfeeding as well.  Her fear is that Lucy could possibly be aspirating small amounts of breast milk every time she nurses, thus compromising her lungs and putting her at risk of having another aspiration pneumonia. Her fear is that kids with low tone who have repeated aspiration pneumonias are at greater risk of not recovering from the illness, possibly requiring a trach.  Yikes!    

We are disappointed, to say the least, with the results and recommendations from this study.   Lucy is a breastfeeding addict, because of this we have been modifying her nursing since we were given the results from the first study.  I have been pumping and then bringing Lucy to nurse on an empty breast. This way she is receiving the comfort and security she longs for but not the milk.  She does not seem to mind that there is little to no milk flowing when she is nursing, again another plus to her lack of appetite.  Very often Lucy comes to me to nurse for just a few seconds at a time when she is in a stressful situation, it’s her way of asserting her power and finding comfort when she knows she has very little.   I had the speech pathologist listen to Lucy when she was nursing to hear for any changes in her breathing and swallowing, thankfully she did not notice any problems. She observed that Lucy does very little swallowing when she is nursing, indicating that she is receiving very little milk.   Still there is really no good way of knowing if she is in fact aspirating when she is nursing.  We are going to need to work very hard with Lucy to find alternative ways of comforting her, this is NOT going to be easy, but hopefully she and I will learn.  I am feeling very defeated, but I will of course continue to pump and provide Lucy with as much breast milk as possible through her tube.   Got breast milk?  I am on a mission to find some lactating mamas' who are interested in donating any of their extra milk.

Yesterday and today we were at DuPont again to find Lucy some adaptive equipment that will hopefully make her life and ours a little easier.  I have been initiated into the world of special needs equipment, holy moley I had no idea that they had so many options available to us!  I was equally amazed and overwhelmed with what insurance will cover and all the restrictions and limitations that go along with that.  After weighing the pros and cons of  several systems, we are going to be getting Lucy a seating device that will support her trunk better when she sits thus allowing her to use both of her arms without using one arm for stabilization.  This seat has a combination hi/low base for indoor use as well as a pretty cool looking stroller attachment for use when we are out and about.   Lucy is small and still fits in most of her baby equipment, but despite her size she is growing up and wants to be more independent and interact more with her surroundings.   That being said, today we fit Lucy for a teeny tiny walker which will help her to get up and moving as much as her little heart desires!  I was not sure how she would react to using a walker and was VERY pleasantly surprised when she grabbed on and put one foot in front of the other.  We trialed both posterior(a walker that you pull behind you) and anterior (a walker that you push in front of you) types.  For Lucy it was more natural for her to use an anterior walker, she kept trying to turn around and push the posterior walker.   Lucy took to walking with a walker fairly quickly, she would walk a few steps than sit down to take a break.  At one point she pushed a walker out of the door of the therapy room and part way down the hall before she wore herself out.  She was so darn proud of herself and she smiled so big that her binky fell onto the floor.  After weighing the pros and cons of the three different walkers we trialed today we decided that the anterior walker with two wheels on the front and stoppers(now tennis balls) on the back was the best option for Lucy.  Unlike her adaptive seating system we ordered yesterday that will take three to four months to get, we were able to bring home her new walker today.  Now that it is in our home, she is not as interested in it as she was at DuPont.  Perhaps she saw the walker as a means of high tailing it out of the hospital and that is why she took to it as well as she did.

Today we have an appointment with Lucy’s GI nutritionist,  I am not expecting any surprises from this appointment it should be a routine weight check and eval.  We have had a whirlwind of appointments this week, we are going to take a break from all the appointments for the next month as we are “officially” taking a summer vacation!  We have a lot of things to cross off our summer fun list.  Of course if  Lucy or one of the other kids gets sick we will address the issue, but hopefully we don’t get sick of vacation.

Jack, Megan and Sophie have all been busy with various morning camps the last two weeks.  I organized a very complicated schedule of who’s going where on what afternoon this week with several of our friends.  Without the love, support, and hours of babysitting these friends have offered us we would be more insane than we already are!

P.S. I will post a slew of pictures just as soon as I charge the battery on our camera.

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