Practice (hopefully) Makes Perfect

I started my vital stimulation treatments on 5/24. It's pretty low-key and I appear to be tolerating the treatments well. I freak out at the beginning when Marsha has to hook the two little electrodes to my neck, but that's just because I hate having anything taped to me at all. At the end she puts aloe vera or some moisturizing cream on my neck. I don't mind this part.

On the fourth session, I was tolerating the two electrodes so well, that Marsha has since put four on me in each session. Once they are on, she just gradually increases the level of stimulation while I eat 3 ounces of baby food and crackers. The session is about an hour and usually by that time, I am pretty bored and despite mommy and daddy's efforts, I am a bit stir crazy.

So today, I completed my sixth session - just 15 more to go. Marsha already has my swallow test scheduled for 6/21 to see how I am doing. I overheard mommy and daddy saying that if this doesn't work, they are going to look into getting my a stomach tube. There's a little boy that goes to my therapy who has one and I guess it's not as bad as it once seemed. This little boy is named Christopher. He's five years old and has trouble chewing and swallowing. I heard his mommy tell my mommy that he was born early and with all the tubes they had to put in his throat to help him grow and be strong caused him to not want anything in his mouth. At all. They called it oral aversion. So, he only eats stage 2 baby food and the rest goes in his tube into his stomach.

The stomach tube wasn't at all as bad as mommy and daddy thought. In fact it just looks like Christopher has a valve on him - much like one of those beach balls that you have to blow up. The valve looks very similar. The hope is that I won't have to go through the surgery and have to get one.

I know for a fact that mommy and daddy are getting frustrated with the amount of times I am pulling tape off of my face or am needing my tube to be re-insterted. I guess I haven't learned that pulling it off means it has to go back on. I throw a major fit every time it has to be reapplied or inserted. It's probably my least favorite thing to do. Period.

Well, I have to have my last feeding of the night. I hope everyone had a nice Memorial Day weekend!

Love,
Emerson

Do You Hear What I Hear?

All I can hear right now is my screaming. Bloody murder.

Well, my ear tube surgery is done. We got there at 7 a.m. they took me back at 7:50, and the nurse went and got mommy and daddy at 8:01 to say I was done. I didn't come out of the anesthesia too well. I have basically been kicking and screaming for an hour and just dozed off to sleep. Isn't it amazing that I can post a message on my blog while sleeping?!?!? That's the Miracle of Modernity (aka MOM).

All the fluid has been drained from my ears and I shouldn't have too much additional drainage. We have some special drops to put in my ears, 3 times per day, which should help.

My hearing should be improved immediately and I should also start seeing improved balance, although I am getting pretty good on my feet!

Well, tomorrow morning at 7:30 a.m. I am going in for my very first vital stimulation therapy session. It's a pretty intense schedule - 6 days per week for about 3 and a half weeks. Mommy and daddy will go to my first and then take turns taking me. I really am excited. Please keep your fingers crossed and keep me in your thoughts.

Big hugs!

Emerson

Yippie Skippie!

I never thought it could happen. Ever. But it did. Someone in the health care world was able to work some magic and I am getting my ear tubes in on MONDAY! Wooooooooo-hooooooooo! I am so happy, I could pee my pants! Oh, I know, I do that every day. But seriously! This is the best news ever!

So, I have to be at Children's hospital at 7:00 a.m. and the procedure will be at 8:00 a.m. It will only last about 15 minutes, but they will put me under and for that, I have to be away from daycare for the day. So, even better, mommy is going to take off and I will get to see her all day!

Here's to greater balance, improved speech, and hopefully a new positive turn in my health care improvements!

Picture me waving bye bye. Because I can do that now!

Emerson

DENIED!

Yep, that's right. The big, old, nasty insurance company has denied covering the vital stimulation therapy that my speech therapist, G.I. doctor and Pediatrician all recommend. They say there is a line in the policy that says they don't cover electro-stimulation to treat dysphagia, however, they were the ones who said that Children's Hospital was the only in-network provider we could use! It's only now, that we are requesting an out-of-network referral that they say this. Oh, and that it's too experimental. I guess they would rather cover the cost of an anesthesiologist and a surgeon to insert a stomach tube, continue to pay for my food and ultimately offer no real chance for a cure.

So, mommy and daddy are looking into a private pay option and following the appeal and grievance process as a retro-active activity. The provider they are wanting me to see is being super nice and offering her reimbursable rate to mommy and daddy - not her full rate. Plus, the provider got mommy and daddy in touch with an agency here that coordinates and often covers this kind of care for kids like me. So there's a chance it will be covered partially by them. Miraculously, there's a government program out there that is not financially need-based, rather they focus on the needs of the child. Imagine that! Can you believe I sound so cynical at such a young age? Forgive me. I have been exposed to the big bad world of HMOs!

And now for a good health care news story!

Today, I had a consultation on my ears to see if I am a candidate for ear tubes. Mommy and daddy took me down to the place. My appointment was with Dr. S. When we got there, a nice lady performed a hearing test. I didn't cry at all. Then we went into Dr. S's examining room and waited. Mommy said we were in a good place when she noticed that Dr. S got his Medical Degree from the University of Oklahoma. Goooooooooo Sooners!

Well, anyway, Dr. S and his assistant Pam checked my ears. I won't lie; I screamed the whole time. Dr. S said my ears were full of fluid and red. No infection, but well on their way. He recommended ear tubes and prescribed a new antibiotic for me to take while we await a surgery time. Pam is going to work with the scheduler to see if there is something sooner than the usual 3 weeks out since my ears are so bad. It probably doesn't hurt that mommy mentioned her Okie connection either! ;)

Milestone Update

Well, I am walking really good now and am even trying to run, sometimes. But when I try to run, I go too fast and end up falling down. Oh, I even started waving! I will see if mommy or daddy can get a picture of me doing it and post it up here. It's pretty cute if I can say so!

I know it's been a while since my blog has been updated. Mommy has been really busy and now with this next round of health care junk, it's probably going to get even busier.

I promise to make her do her next update sooner than last time. If only I could do this myself!

Bye-bye!

I mean, c'mon, how could you deny a face like this?

Oh! The Places I'll Go!

Howdy everyone! Sorry it's been so long since my last posting - but I have had big things going on. Huge! I went on my very first vacation and my very first plane trip! It was so much fun. Mommy said I did a really good job on the plane ride there, but I don't know because I slept all but 20 minutes of it.

You might be wondering where we went! Well, we went to Oklahoma to visit my Granparents and meet a whole bunch of my family members. It was a great time - I even started walking while I was there and my Great Grandma Dora got to see me do it! Everyone was so great to me and went out of their way to either visit me or care for me. I really had a wonderful time and already miss everyone. Thank goodness we took a lot of pictures.

Speaking of pictures, I have included some of my favorites from my trip and I hope you will take a minute to look at them and meet some of my extended family.

Now that we are officially back, you can count on some more frequent updates.

Big hugs!
Emerson

Pre-flight contemplation...

Grandpa Jim reads me a story!

I also got to meet the Oklahoma City Howards. That's my Great Uncle Rex, Great Grandma Dora (this is at her house in Ponca City), cousin Rachel, me and mommy and and my Great Aunt Susan.

These feet were made for walkin'. And that's just what they'll do. One day these little feet will bring me right over to you!

Here I am with my Great Grandma Dora.

Here's a whole slew of Okies! From l-r: Aunt Mikael, Uncle Marsh, Mommy, Great Aunt Kim, me, Grandma Lynn, Cousins James and Skye and Grandpa Jim.

Mommy made me a stunning crown so that I could officially be King for a Day!

Grandpa Jim, Grandma Lynn, Me and the big pink ball!