I thought it was time for an update, since many of you have been kind of enough to ask about our progress with Jake’s acid reflux. Not much has happened in the last month, so this one isn’t going to be accompanied by a full orchestral fanfare. Maybe a guy on the kazoo would be more appropriate. But, there are a few things to say.
Jake’s been on his meds for about a month, Lanzaprazole for anyone who’s curious, and the oftenest asked question I get is, “Is it working?”. I usually stutter my way through a semi-eloquent version of a shrug. Since Jake’s acid reflux is “silent”, I’m not sure how to tell if it’s working. Along the lines of, how do you know the ghost is really out of your house and not just being real quiet if you couldn‘t see it in the first place? Jake’s happy, cute, funny, eats most of the time and still barfs every once in a while. He hasn’t gained any more weight, but that may still be on the near horizon. So, I hate to say it, but I really have no idea if it’s working or not. I just hope he’s in less pain!
We have FINALLY been scheduled an appointment for a feeding therapy evaluation with a feeding therapist, feeding specialist, occupational therapist, speech therapist and possibly a shaman thrown in for good measure. They will all watch him eat, watch how he and I “do” mealtimes together and help me understand how to help get him over his fear of solid food. After the evaulation, we’ll see another therapist several times until we get Jake able to eat green eggs and ham without the blender having to be involved.
One of the more annoying parts of this process was actually getting the appointment. I called five times, went into the office only to be told they “don’t schedule on Fridays” and called twice more. Then, played phone tag for a few days and finally found out that there was a two month waiting list. I called the hospital in Denver, just in case we could get him in sooner, talked to five different people this time and my last phone call was never returned. So, I gave up my hope of getting in sooner and although we are technically still on the waiting list for five different clinics, I think that the beginning of January is looking good. Since every specialist, within every practice, within every group of doctors, within every hospital calls what we need something different, the whole process got maddening and I was tempted several times to hurl my phone into the kitchen sink. One more issue to address on my list of strongly worded letters I intent to write someday. Please, please, please, everyone call what we need the same thing, so I won’t have to go over the whole problem from start to finish with every single person I talk to.
And, that lead to my realization that I can speak Surgery, Cancer, Endometriosis, Pediatrics, Pain Management and am marginally fluent in Nervous System, but when it comes to Pediatric Gastrointestinal Disorders, I’m stumbling about a back alley with my electronic translator which will only ask where the nearest pickle vendor is located. Speaking the language of the disease is so important, so I plan to do whatever research I need to in the next few weeks so I can stop referring to the pickle vendor and start being intelligent and useful in my new language.
For all the pain that he has been in, Jake continues to cruise around being his usual little funny self. The gaps in his development are getting a little wider, which I see every time he’s in the nursery at church or hanging with his favorite girlfriend at the YMCA. He’s going to be 18 months in a few days and he still isn’t walking and words, while there are many, aren’t intelligible. (He still refuses to say “mama” much to my annoyance) . Speech and eating difficulties often go hand in hand since all the same muscles are required. He does do a lot of the other things he should be doing at this age, so we’re not worried about him too much, but there will be some catch up to do when we figure out how to keep his body healthy and nourished. There are so many wonderful things about him and it’s obvious that he has a sense of humor and is smart. Our favorite thing to do is sing “The Wheels on the Bus” together, but we have bats, piranhas, gators and fish on our bus, all which make a sound or a motion and he’s catching on and starting to do the motions or make the sounds before I do, which is pretty awesome. So, I’m not any more worried than a watchful mama is going to be anyway.
Thanks, as always, for being part of our journey. I’ll update again in a few weeks after we see the specialists for the whateveryoucallit appointment. By then, I hopefully WILL know what to call it. J
And just so you can ALL see how cute he is, here is one of our Christmas picture mishaps…