On Thursday my mom and I made our way to CHOP to have his feeding eval completed. There is somewhat of a wait to have an eval, but when you say "Down syndrome" and "infant" in the same sentence, they tend to get you in fairly quickly - even put you on a waiting list. It was only a 2 week wait for us from call to appointment.
If you ever decided to do a feeding eval for your "being", keep in mind that the more specialists in that appointment you see, the more copays you have. This one appointment resulted in 4 copays. If you do no have Medicaid as a secondary insurance, man do these specialist appointments add up. {Especially when one parent is working.} We had an equivalent of 5 copays this week alone.
Fortunately, we have Medicaid for Wes. In Pennsylvania, there is a loophole where if you are born with Down syndrome, you automatically qualify for Medicaid regardless of income. Before getting your panties in a tizzy remember - my kiddo did not choose to have Down syndrome, and don't even get me started on that bull on me choosing to "not" have him. That's garbage.
So... secondary insurance is a highly appreciated {and needed} benefit for my son. However, there are 5 insurance providers that you need to choose from. Not all doctors accept these insurances, which becomes a BEAR when you are in need of a referral.
Like in our situation... Wes' pediatrician accepts our primary insurance - no problem - and we don't ever need referrals for our primary. However, with his secondary {Keystone-Mercy}, his doctor only accepts Aetna CHIP. Well, our Aetna choice is Aetna Better Health which is clearly not accepted. {CHOP accepts - I believe - all 5 of our options.} Since Wes' primary doesn't accept our secondary insurance, then NONE of Wes' copays for his CHOP specialists are covered. That means, secondary insurance is pointless if we don't change PCP's. This is frustrating and sad because our pediatrician was the first doctor to evaluate Wes. He just looked at Wes with nothing but love and care. He is a huge advocate for us. Ugh....
Anywho...
As usual, I lose my train of thought and ramble...
We were seen by a team consisting of OT, ST, Nutrition and a Doctor. There were two separate appointments done back to back. The first by the nurse practitioner and nutritionist. The second by the ST and OT. Finally, a one minute check up by his doctor. Yes, it was about that amount of time - that's a friggin' copay! D'ah!
Without going into the boringness of the 2 1/2 hour appointment, and how stinking cute Wes was when babbling and shouting {Woohoo! Baby boy can speak like a champ!} and how much I felt like a terrible mom {don't we all feel imperfect?}, this is what the team came up with:
Speech: Feed Wes straight forward, supporting under his lip to close mouth while swooping out and upwards. Stop unnecessary oral exercises because Wes has good tone. These exercises are bringing more attention to his tongue and other areas of his mouth which is causing more tongue thrust.
*** Hot topic of oral motor exercises... I will test this out for a week or two before I decide if I am going to drop it or not. Honestly, all this crap with his tongue protruding out happened when I tried to be super mom and shoving things into his mouth. We'll see! ***
OT: Get it! - Ok, I will! Fortunately Wes' 6 month eval is on Monday. Woohoo to more therapists in my home. {Sarcasm - but, I actually don't mind at all. I just know things are going to increase and add on} Also stated was to support his sides in his chair with a rolled towel and work on having him reach for things in a seated position. No prob, already doing that.
Nutrition: Xanthan Gum has killed babies in the past year. 22 to be exact. This is what I thicken his formula with. This is what ALL thickeners have in them. I'm screwed. I need to try oatmeal {again}. Last time he got red as a cherry, but that is not the reaction you receive when a child has Celiacs. I don't want a dead baby, so I shall try replacing oatmeal for Xanthan Gum for at least 2 bottles a day. Ey yiyi! Any who, we're doing another upper barium swallow study in November to see if he can retry thinner liquids than a honey consistency. Also, keep eating 24 - 30 oz a day and spoon feed twice a day. If I give him only 24 oz of formula, I need to give him a vitamin supplement. Umm, no thanks to supplements. Until Wes refuses food with his adequate amount of nutrition, I will not be pumping him with supplements. This kid already gets enough additives to his diet.
Doctor: "Wes has a chubby tummy - did he poop today?" me: "Yes, twice". This is where I begin to internally freak out about the Xanthan Gum affecting his gut. Oh, did I mention that ALL of September, this boy pooped via suppository. And, the problem with Xanthan Gum IS digestion issues, specifically NOT pooping. Yes, freaking out.
Ugh! Well, GTG - Someone is hungry and I need to make an oatmeal bottle.
Lovely.
