Our first week at the Center for Pediatric Feeding & Swallowing

I have so many impressions to share from the past few days, but I cannot guarantee that I'll be able to squeeze them all into this post, or even that I'll be able to finish writing this post in one go.

Overall, I have had an overwhelming feeling that we are indeed in the right place to help Richard O. get his feeding back on track. As expected, the first days have not been easy, but we are seeing improvement, and I feel secure that the methodology of Dr. Eicher and Dr. Berkowitz is sound in its scientific basis.

They observed us feeding Richard O. first thing on Tuesday morning, and then met with us afterward. Given the huge pile of medical records that I had forwarded to them over the past week, the doctors had a good feeling for Richard's overall picture to date, and the actual feeding evaluation gave them the visual confirmation that they needed for Richard O's treatment to move forward.

Several issues came up that we will be addressing during our stay here:

First, Richard O's GI motility. The poor kid has struggled a LOT with constipation ever since his T1 diagnosis. Of course, if you can't get stuff OUT of your system efficiently, well...eventually things are going to back up pretty badly, and you won't want to eat much. It's rather uncomfortable.

Secondly, gastroesophageal reflux. Richard O. had been prescribed Prevacid by our pediatrician immediately before his stomach illness hit, but we discontinued the meds when his vomiting started in case it was an allergic reaction. The reflux can make it very painful for him to eat, and even to sleep. I will be curious to see whether this medication helps change his sleeping patterns at all.

Third, muscle weakness. In the early intervention evaluation he had done back in NY, it came up that Richard O. has some weakness in his trunk, and especially has difficulty with rotation in his shoulders and hips. Though he had great posture while sitting at age 6 months, it has since deterioriated, and he has a pronounced posterior pelvic tilt, and now sits with a rounded back. While we are at the center, he will receive physical therapy once a day to help address this weakness.

And then, there's the behavioral piece...since he's learned to associate eating with pain, we have to retrain him in how to eat. We have found that he will not tolerate having the spoon touch his tongue, and this also partially explains why he cannot successfully drink from a cup, either -- apparently spoon skills translate to cup-drinking skills later on. I never knew this before coming here.

The days are very long, and sometimes, they are frustrating for all three of us in the family. Richard O. has four feeding sessions a day at the center (one every two hours!), and one session of physical therapy each day as well. Some days there are a lot of tears: Richard O's shed in public as he gets frustrated with all the changes he is being asked to make, and sometimes my own, washed down the drain of the shower. It is so hard to see your baby struggle.

Despite my initial hopes, it looks like we will be here for a month. Period. That will afford us the best chance at helping the behavioral changes stick once we exit the program. I shudder to think at what the cost of all this therapy will be, even though we have very good insurance coverage for it all. Still, it is necessary for my son -- we have no hope of successfully managing his diabetes if he cannot be persuaded to eat or drink anything! As I try to remind myself when things get hard, we are literally saving his life by helping him overcome this present difficulty.

I am so incredibly grateful for the kindness of my Aunt Dolly and Uncle Lou, who have permitted us to set up camp in their home for the next month. They have both been so incredibly generous and thoughtful -- we get to come home to wonderful home-cooked meals, and such loving, supportive people. I have a beautiful neighborhood in which to take Richard O. for walks, and a backyard where he can play -- and on occasion, he even gets to play with his third cousin Annabelle, who is just a few months older. I think this experience would be so much more difficult if we had to return to a drab hotel room every night. Words just don't express the depth of gratitude I hold for Dolly and Lou.

As long as I'm on the subject of gratitude...can I say that I truly have the best friends and family in the world? If there is one thing that these few truly horrible weeks have taught me, it is that an incredible number of people care very deeply for me, my son, and my husband. My sister-in-law Catherine has been an absolute angel, organizing a veritable army of church members remotely from her home in California. My visiting teachers and home teachers from the church have performed such thoughtful acts of service, from clearing our yard of brush to completely cleaning our home from stem to stern. I had visitors each day I was in the hospital with Richard O. Meals were brought to our home, toys and books lent to my son, and many other small and thoughtful acts of service rendered. And through all of this drama my own mother has been there to clean up the puke, soothe the baby, run to the store, and perform just about any job that could be performed by anyone in such a situation.

Truly, words fail me -- I know we are being watched over. I know my son is being watched over. I know we are not alone. And I know that inside I am growing tougher and more resilient than I have ever been before. I have been hollowed out that I might be filled again with better, more beautiful things. Smaller joys really are sweeter.

It's only 8:30, but I think it's time to turn in for the night. Both of my Richards are already snoozing, and I am eager to join them.