Jaxon's first feeding clinic evaluation went very well. I was so nervous that they were going to put a bottle in his mouth resulting in him getting violently sick. Not the case at all. I LOVED the director, which was the only person we saw. She of course fell in love with Jax, who of course flirted the whole time...these boys...
She read all his medical reports and was very prepared. She listened to everything I said and wrote it ALL down. She asked if I was able to "touch" Jaxon's face. I squeezed his cheeks and asked, "like this"? She laughed and said she could cross that whole learning technique off. She then asked if I could touch his lips. I laughed and said I put chap stick on it every few hours (he has blistered lips from all the vomiting). She was trying to figure out where we needed to start. I felt so proud of Jax that we could jump ahead about a month's worth of therapy. And here I thought he was going to be one of the worse cases they've ever seen.
So after a long talk and showing her that Jax will chew on his own fingers, toys, bib etc, we figured out where to start with him. He will NOT eat until his vomiting is figured out. She wanted to make that clear to me. But in the meantime, she wants Jax to be very familiar with "how" to eat, so when the time comes, the process will be much faster and easier. She believes Jaxon's true anatomical age is about 5.5 months since he was born the size of a 28 week baby. She said she does have faith that he has very nasty reflux and that it will go away, all while giving me the disclaimer that she is not a GI doctor in any way, but it IS possible, and that these upcoming tests can be negative. She thinks Jax is very bright and didn't display any signs of neurological problems, but again, gave me the disclaimer that she can not in fact see into his brain. She said that if this IS just reflux, then it is in fact one of the worst cases they've seen, but Jax is not broken. It will just be a bit longer..I hope her optimism proves to be right!
She worked on an exercise with Jax and I, of which we'll be doing at home over the next 5 weeks until our next evaluation. She wants to see Jax at every GI appt, but since our next GI appt is next week, she wants to see him at his following one. Jax needs to get these processes down slowly but surely. She said once his vomiting has subsided, Jax should be very ready to do intense training. But until then, we're starting with a SPOON.
Our exercise is Jax sitting in his highchair and I work with him 3x's a day with a spoon and water. He actually took a few drops of water at the appointment..swallowed and everything!! Big cheers. The point of the exercise is for him to accept the spoon on his own terms and to know it's not a bad thing, nor is the moisture going into his mouth. I tested out the exercise with him with the director and by the 3rd time he tried heaving, so that ends it immediately. The whole exercise is only 5 minutes total (unless he gets sick).
I tried it by myself this morning, and I was excited that he accepted a few drops of water. I'm amazed since he vomits if he sucks on a wet washcloth in the tub or if I put saline in his nose! The doctor made it clear that those things surprise him and trigger a gag reflex. He has to be the one to control it.
*If anyone out there going through this wants exact details of how we do this exercise, let me know and I can email you personally.
So we've started. It's such a small step, but at the same time, so nice for Jax to start having a spoon brought to his lips and understand it's not evil. Sadly...I'll probably never get to feed Jax a bottle. The doc said that by the time we get him healed and eating (and tube-free) he'll never be able to do a bottle (and will prob be too old for them at that point!). He'll need have things that don't induce vomiting easily, like pureed food.
So that's that. A long road, that I'm soo happy to start. Let's just hope this is reflux, so that road can actually be conquered. And he weighed 15.8lbs and is still under 25" (SO short!!!)
Switching gears. Brady decided he was too cool to sleep last night. He enjoyed being up from 2am-4:30am. Of course Jax is sleeping better, but still falls apart between 4-5am because of the congestion making him gag. Soooo after 2am there was no way of sleeping for us. I'm so proud that Jax slept from 7-3, and then up randomly. I'm very excited to see how he does once this cold is over.
What do you think they're talking about?
Jax steals my heart in this photo.
Bleeker as Daddy and I so fondly think of Jax.
Brady's new found love of balls (and pulling the cat's hair)
This morning they were kinda talking to eachother...I thought it was too cute.
Some crazy toy I brought out that was in our basement since
I was pregnant - anything new is a big hit!