So we’ve entered a new phase of our lives, River and the family are slowly adjusting. I am slowly adjusting too. At first there was definitely expected upheaval and tears! River is getting to know Patty and actually things are going pretty well. Her appointments have definetly suffered in frequency, PT is about once a month, and feeding therapy will resume this week at about twice a month. Recently she had follow-ups with both Dr. Morris (Neurosurgeon) and Dr. Pickens(GI). First off kudos to Daddy who had to do both of these appointments by Himself!! I was away for 4 days(longest I’ve ever been away from both the kids, mostly River) on a school field trip to Mt. Rainier (I’m in a geology class).
Dr. Morris: River’s scar recently has “acted up”, not oozing, but swelling and looking gnarly red near the lowest part of the incision. Dr. Morris assured in his most mundane and unexcitable manner that it was stitches working their way out and that maybe we could apply a little bacitracin, but not to be overly concerned. And other than that the appointment was uneventful (from what I heard second hand).
Dr. Pickens and the GI clinic: This turned out to be a very lengthy appointment for Pete and the kids, but he wanted, and so did Dr. P, to be very thorough. We really want to get River off of night feeds. We have, prior to this appointment, feeding her nearly 500 ml at night, and only getting about 600 ml down her during the day. During the day it was blenderized diet(BD), and at night it was a mixture of milk and Organic Pediasmart. The highlights of the appointment were that River is growing great! She’s hovering around the 50th percentile still for weight, which is consistent and they are not concerned about calories. She weighs about 24.25lbs!! And our backs can tell. Pete and the dietician and Dr. P worked out a plan to bump up the daily feelings and Dr. P wants us to give them so her way slower than we have been, he explained that the way we were giving the syringe feeds were much too fast and were actually slowing down her digestion which would explain why it seemed she couldnt hold as much as she should logically be able too. Instead of two 70ml syringes (which we now use the Toomey syringe and it’s way better!) an hour it’ll be three 70ml (or roughly 200ml) an hour and it’ll take 45 minutes to slowly inject them. And do that 4 times a day. It seems like a huge giant change right? It is!! It is really time consuming and has been pretty difficult on all of us. The flip side of that though is that she is getting real food. To make it simpler on everyone we would stick her on a formula and a pump four times a day, in a backpack attached to her. Which is what most people do.
We are torn as to what to ultimately do since this is a huge commitment. We may think of getting a new pump and backpack for her and doing a 50/50 version so as to make it a little easier. The blenderized diet is thick and heavy and doesn’t move through a pump unless really thinned down, then it’s more like a homemade formula and you aren’t getting the benefits of having thick heavy food in your stomach. The thicker it is, the more it actually stays down, and helps with vomiting. We are super reluctant to give her more thinned-down blends. But spending 3 broken up hours a day on pushing a syringe and trying to get a toddler to hold still is pretty challenging as you might imagine. The good news is that 200 ml in an hour, going super slow, seems to be working so far. There has been no increase in vomiting because of it. And now her night feeds, on a good day, are down to about 330ml. And we are hoping to keep up the trend. In 2 months we need to check in with Dr. P and if there is not enough progress he may want to give her more gastric testing (we definitely don’t want this).
Physical therapy this week was a check-up with Jean, and while River’s skills have certainly improved, she is still not walking. And she was extremely uncooperative with us that morning, acting like a typical toddler and giving lots of attitude and independence. We will check in with Jean in another month. Feeding therapy this week, after a short hiatus, with Jennifer was another story. It went fantastic! River was actually interested in the food (of course I fed her less to get her hungry) she cooperated as much as a toddler can, and she discovered a sippy cup(Zo-Li) that she totally loved and drank an ounce from. We were quite encouraged. And of course Mommy went home and ordered a Zo-Li sippy cup off of Amazon.
As far as River’s adjusting to the new life of College Mom, it’s turned out well! Once the initial outrage of me walking out the door or whatnot has passed, she quickly settles down with her surroundings, she’s become more comfortable with Patty, and even Patty’s car. She appears to be connecting well with her new “family members”! With our new hectic schedules and busier lifestyle, this certainly helps to alleviate my emotions!
River's Journey 