Oh, Abigail

I find myself often saying "Oh, Abigail...you're just fine, honey. It's okay. You're gonna be just okay"...and I know she will be one day - but after yesterday I've come to realize that she is really uncomfortable. There seems to be a lot more going on than meets the eye. I always knew she was uncomfortable - but I didn't realize how much could actually be ailing her.

We went the the speech pathologist yesterday - I wasn't too impressed -I mean the pathologist herself was really nice and sincere, but I didn't feel like I got anything new from her. I left with instructions on different ways to hold Abi (ways that I already hold her in normally) and some new positions to feed her in...which are pretty awkward. Oh, and I left with a recommendation to use essential oils....again, which I already do. Overall, not much to work with. She did, however, agree that her breathing ailment sounds like some sort of malacia [muh - lay - sha], (which just means softened throat pipes) and suggested that it is possible that Abigail likes to hold her head back or to the side so much because it stretches out her neck and possibly makes her less than solid throat (whether it be trachea or larynx we don't know) a little more rigid, in turn making it easier for her to breath. That is an interesting thought, and it makes complete sense. But she wasn't worried about Abigail aspirating -- swallowing liquid into her lungs -- and didn't see a need to further speech therapy or eating sessions. So that was good. But I left her office thinking "eh"...like I would have survived okay without that visit.

Right after seeing the speech pathologist we went to the see her pediatrician. This pediatrician is a gift from heaven because his dad is a neurologist, so he has a background and a little understanding of neurology and with Abigail's condition it's nice to have someone with a slight background. And if he doesn't know the answer, he is one call away from one. Also! his neurologist dad is the same guy who trained the epileptologist that Abigail and I see. How neat is that? So it's a nice circle and I'm excited to have him. However, the first time I went to visit him I was not super impressed, he didn't seem to care about what I had to say and kinda blew off my concerns with a "let's visit back in a month and see if the concerns are still there" -- well they are, and I was determined to get what I wanted this time -whether he agreed or not. What I wanted were 3 specialists - G.I, (digestive system) Vision, and an E.N.T. (Ear, Nose, Throat). This visit he was much more caring, sincere and almost sorry for the last visit and how he kinda blew it off, because he heard how bad it actually was. He was much more proactive about his approach this time than last and I like that. This visit we went in, he heard her breathing and within seconds was sold that she needed to see an E.N.T in the next few days. He ordered a barium test, which is where Abigail will drink some special mixture that shows up in an x-ray to be sure that she is or is not at all aspirating. We will be getting her scoped to get an official diagnosis on this labored breathing thing to confirm that it isn't anything more serious than malacia, or see if there is something else going to that would cause more concern. He also suggested a sleep study to determine if she maybe has sleep apnea due to this breathing issue (this test is not for sure, he just suggested it to the E.N.T - but the E.N.T has to see the need and order it). He also believes Abigail still has pretty bad reflux that is affecting her eating because she hasn't gained weight in a month, she hasn't lost weight, but she hasn't gained anything. He sent a referral to a gastro-neurologist (an even more specialized G.I) so they could take a look and see if there is anything we can do. Meanwhile he prescribed more reflux meds - this time we are on prevacid...a step up from the previous zantac. It's so frustrating to me. This isn't the first time Abigail has had weight issues, and I know it's not my fault, but I can't help but feel like i'm not providing for her like I should be. And finally, he did also agree that her eyes are not perfectly aligned and sent a referral for the vision specialist. WHEW! I got all of them! And with good reason, I'm not just a hypersensitive crazy mom  - she really was uncomfortable for a reason...Although there is still so much to do, it gives me great hope that there is something we can still do for her and she is not destined to be uncomfortable forever.

During this visit I was also able to mention her breath holding things that she used to do and has done TWICE since that last post I wrote about never wanting to see them again...he seemed relatively concerned about them. I know that a seizure happens right after that episode, but I don't know if that breath holding thing is a seizure in itself..he mentioned that it could be her airways closing in and making it hard for her. So that would suck. BUT! Something I forgot to say before is that if we do get and official diagnosis on this malacia thing then there is possibly things that can be done for it as well to help the healing and strengthening of them.

I still don't know anything yet, except there is still SO MUCH TO DO! We have until August before our new insurance kicks in and we have to pay the deductible again. Oh, Abigail. What am I going to do with you?

This is AbiNormal

UPDATE: we got the E.N.T visit scheduled for Friday in salt lake (since ill be there anyway for the seizure Q and A thing tomorrow) and a vision appt for next Thursday in st George! Now I just wait for the gastro people to call!