Tuesday, November 10, 2009

Post Halloween Sugar Rush

We made it through the feeding clinic evaluation for Cameron and Evan individually. I was worried because the boys have had bad colds all week and they won't even let us past the nurses station check in if any of us (me and my hubby included) have any sign of fever or serious coughing because there are so many medically fragile kids there. Luckily we were all okay. I left each boy at home with my mom and I took the other one with DH to their appointment.

First of all, I just have to say, damn do singleton parents have it made!!!! This was my first time ever taking only one baby out and it was easy as shit. He was even better behaved and did not have his brother to feed off the anxiety and chaos. It was sooooo nice and smooth to push around a lightweight stroller for one baby, I didn't bump into a single thing all day. Carrying half the gear we needed, changing only one diaper, the quiet while talking to a panel of doctors all at once. One kid at a time, no matter what you are doing or how things are going, is SOOOOOO easy. It was like I was able to breathe for a minute.

They did the vitals intake when we first got there, which as usual sent each boy into hysterics though not as bad when they're seeing each other freak out. During the evaluations there was a pediatric psychiatrist, nutritionist, GI nurse practitioner (NP) and a speech therapist in the room with us doing our evaluation by asking a battery of questions with our medical records in their laps. But we were also on a close circuit video camera so that the head director of the program who is a GI specialist, and four other people of varying medical experience could watch. I have no idea who the other people were but we did get to meet with the head director at the end.

The Director told us that the boys oral aversion and reflux are so bad that doing just the outpatient OT and Speech as well as the OT and Speech through EI services will not be enough. He said that it was obvious that I've been trained for the basic eating problems and behaviors through all our therapists and doctors thus far, and that we need more extensive behavioral observations and conditioning because eating by mouth starts off as a reflexive thing as infants but past one year of age it is then a learned behavior and can not be "figured out" without help. And he had no guesses as to when they will outgrow the reflux but that it could take even longer than the 22mos of age that I've heard of. They are on the best medication on the market and that is still not working for us so right now only time and intensive therapy will tell.

Typically there are no more than 6 to 8 kids in the program at a time. They have one slot waiting for Cameron right now but since his twin is in the exact same boat and I refuse to admit them separately, and because we are high risk for illness due to cold/flu/RSV/H1N1 season, we have been waitlisted to start the program on June 1st, with the possibility of starting as early as April 1st if there are two sudden openings.

This is kind of a big problem because we are at an all time low with eating. And we are going to be paying out of pocket for continuing for private OT and Speech therapy sessions weekly until we get the boys to eat or get into this program.

The second big problem is the cost. The whole six weeks for one kid out of pocket is $30, 000. Our current insurance will cover all but the Mental Health portions of the six weeks because they feel a child as young as my two don't need Mental Health even though this is clearly as much of a behavioral issue as it is a medical one. We will likely have to pay about $18k out of pocket total for both kids, this is above and beyond the $4k for our out of pocket max (plus the private OT and Speech therapy sessions) because the Mental Health portion doesn't fall into the parameters of the plan because of the boys age. Joy. Luckily someone at the feeding clinic told us that we can hunt around for an insurance during open season that has a lower out of pocket cost and habilitative coverage which is key.

Then, and this is a really trivial thing and will only be a PITA for me, but I will be sitting in uncomfortable chairs for 8hrs a day for 6weeks trying to keep my sanity by staying busy and learning as much as possible from observation and direction from the therapists in the feeding clinic. This is a six week program that goes Monday through Friday from 8am to 4pm and it's about 45min from my house through Baltimore city. While the boys are in the program I'm allowed to stay during the day but only in parent waiting areas which are really just doctor's waiting rooms with horrible chairs a lousy TV and some bad coffee. I have to get an IT guy to come down and hook me up with limited internet abilities. I will be called in secret to sit in the one way mirror observation rooms to watch each baby get fed by psychologists, OT's and nursing staff so that I can learn what they are doing to convince the boys it's okay to eat food. The boys CAN NOT see me during the day unless it's part of the parent training in the last week of the program. I can leave and go do whatever I want but I really would rather be there to watch my boys and learn how they're going to get them to eat but it will be like watching paint dry.

Oh well, whatever it takes, right? This program has a 95% success rate to have the kids go from eating nothing to willingly eat some things by the end of the six weeks. It's not a fix, they stay working with OT for two more years afterward, but by the time we leave the program they should be eating SOMETHING VOLUNTARILY which is a hell of a lot better than nothing.

In more interesting news we have a lot of communication going on in our busy house. The boys are everywhere, climbing on the stairs, running, and getting in to anything they can, pushing all kinds of buttons and poking their fingers in anything at eye level. Both boys know where their head, nose, mouth, eye, and ear are. Both boys easily recognize the letter "O" and can point it out in books and pictures and signs.

Evan does not talk much, but he will soon. Evan is my little professor, my little dragon and has the temper and the studious intensity that match those nicknames but he's such a happy kid that when he bust out his new toothy grin you just can't help but want to pick him up and squeeze him silly. He does respond to the question of "how does a choo choo train go?" with a fist pumping up and down and singing Wooo-wooo in his sweet little boy voice. Most importantly he has signed the words:
All Done

Evan says the words:
Shhhh... (complete with finger to lips)

Evan also waves bye bye, and clearly shakes his head no when he doesn't want something. We are working on blowing whistles and harmonicas and straws to practice making the O shape with the lips and learning to drink from a straw, which Evan really enjoys and has gotten the hang of very quickly. He's loving drinking milk in large sips and tolerates white grape juice but just barely. And we are practicing holding a cookie to our lips and touching it to the tongue without gagging, and while most days it's not successful we have moments. And Evan is showing to be much more tolerant of sensory things. He loves to get his hands dirty and smear pudding all over his table, dip his hand in to milk and water to smash and crumble a cookie and doesn't get upset about being filthy like he used to. He's also doing better at dipping a spoon in puree foods and putting it to his mouth to eat, but it's not much and no where near what you or I would actually call "eating" to sustain life. But it's on his own terms under his own control and he never gags when he is in control. So we are definitely on the right track with this.

Cameron is just a jabber jaws kid. He babbles non stop, has conversations and tells you things (for the life of me I have no idea what he's saying but I'm fascinated just the same) and copies everything you say to him. He also is extremely adept at shaking his head no and is comical when he attempts to shake his head up and down for yes. It takes his whole body and lots of concentration for him to shake yes. He's also developed a flirtatious personality and is perfecting the cutest eye roll ever. Ladies, be forewarned, this kid is going to have you wrapped around his little finger before you even know what's happening.

Cameron now says the words:
Bye Bye (with a wave, usually after the person's left the room)
Wee wee (for pig)
Neigh neigh (for horse)
Moo (for cow)
Baa (for sheep, which is his favorite)
Woof (for dog)
Shhhhh... (complete with finger to lips)

Cameron can sign the words:

Cameron does not love milk but he likes it enough to play with it and take sips willingly. On an interesting side note I learned that many kids with sensory issues will have an aversion to colored foods and often times people don't realize there may be a sensory delay (that kids usually outgrow with time) to things like pasta sauce, carrots, bright green foods, etc, and that they will gravitate to white or light colored foods like milk and some light colored cheeses. And we suspect this may be the case for Cameron. He is putting a vanilla wafer cookie to his lips and will mouth and tongue on it without taking a bite which is a big deal, but he won't eat from a spoon. Cameron is also the more sensory delayed with his hands in that he absolutely detests getting his hands dirty. He will poke and smear food with his pointer finger, but heaven forbid if you try to get him to smear his whole hand in pudding across his table. We will continue to work with this and hope that he outgrows it soon.

So now I have a target date for my goal of development for my boys. To get the boys to eat food by mouth willingly by June 1st. And try very diligently to keep track of all the words they are saying.

Now for the post Halloween Sugar Rush:

Our first bubble bath.

What's that on my head?

Evan did not enjoy the bubble beard.

Dad can we walk the dogs?


Cameron trying on his new Super Mini Entralight feeding pump backpack. It's a teeny tiny backpack that holds the feeding pump, milk bag, and an icepack. The whole thing with milk in the bag weighs about 1lb 7oz which is pretty heavy for a little kid like him. He can walk around with it but it does throw off his balance and make movement difficult. It's also very bad for his posture and not something I'd make him wear for longer than 5 or 10 minutes but it's much nicer than having to chase after him and his brother with their bags, keeping the tubes from tangling.


Leaves are fun!

Our new playroom slide! Thank you Uncle Chris, Timmy and Lucy. We love it!

Bridget is always very excited when it's time for the boys lunch. Wonder why???

Cameron prefers to smear milk in his hair with his Toothette brush rather than drinking it.

Thanks to Uncle Alan, Mommy has some seriously cool fort building skillz.

"No girls aloud Mommy!"


Trish said...

I seriously can't believe how far they've come in the last couple of months. I'm just astounded. Truly.

Good luck with the feeding stuff. I feel like we're living in limbo. And Robbie hasn't had OT in 2 months. The state. Don't get me started.

Annie said...

Your boys are awesome! I hope that they get into the feeding clinic sooner rather than later. I can meet you for lunch or something if you need a break while waiting during the feeding clinic. Love, Love the pictures!

MommaNecey said...

My daughter was 3 before she stopped with the reflux. And it was completely and totally overnight. We had been using the same GI her entire life. We had gone for a second opinion in the same state, but several hours away, but he only said, "Whatever the other doc says is about right." Not a very good 2nd opinion. Then we took her to New Orleans. We had been told she had a milk protein allergy by her original doc (she would vomit literally 20 times on a typical day), but that she could have milk in small amounts. The new GI doc said to take her completely off of milk, she could have nothing with milk in it. She was on 4 different tummy meds at this point, with an amino based formula, and she was 3 years old. When we took her completely off of all products containing even a hint of milk (no cow, goat, or soy milk), she stopped with the reflux. No more vomiting at all. It was completely gone overnight. He also took her off of 3 of her meds. We went back a month later, and he took her off of her last med. She hasn't had a problem since. At 3, she was less than 20 lbs, and now, at age 7y9m, she still weighs less than 40 lbs. But she eats like a champ. Our feeding clinic was not much help. She had food aversions - wouldn't eat anything that had mixed textures, like most jarred toddler foods. She wouldn't eat rice, noodles, oatmeal, grits, or anything similar. She had to take a med for her thyroid, which had to be given in applesauce, so we forced a spoonful down her every morning, but up to age 3 that was a nightmarish challenge. She basically ate cheerios, when she ate anything by mouth. I guess I just want to say, please be encouraged. I'm not saying that your boys have anything similar to what was up with my daughter, but "this too shall pass". And you will be SOOOO glad when it does!!! :)

Jennifer said...

I'm sorry about all you have to deal with! I wonder if there is a fun-raiser you could do to help pay for the feeding clinic. Hmm. Second of all, I want that slide!