Contradiction

Hey peeps, I know I promised pictures and a video. Sorry!

As a testament to me losing my mind...this week has turned out to be one after another one of those manifestations where what should be happening, and what really happens are totally opposite.

Med changes are always hard on every body. It's not just the meds though that are being inconsistent. Let's start with Monday. We did not get in bed until after 1 am due to flight delays. We were an extra hour in the air and an extra half hour on the ground. Let's just say, Cole did not take it very well. He slept in, which was great! The depakote has definitely made him sleepier. His naps are longer and he was sleeping through the night most nights since we have gotten back. However, once again that has changed. Darn full moon! Anyway, back to Monday-I get up and throw on some sweats and do a quick brush of my teeth so that I am at least properly dressed when the oxygen people come to pick up their very expensive concentrator that we did not even end up using. Having the peace of mind that it was available was great, but I don't know how much more our wallet can handle when it comes to travel oxygen. I am in the midst of an appeal with the insurance company. Really guys, it will be cheaper for you if you just pay for one. Then I can stop submitting reimbursements and appeals.Try to make a bean counter believe that one.

So, Cole is still roaming in his pajamas, which are stained since everything else is in the suitcase, still packed, or in the laundry. I hear a knock on the door and totally assume it is the oxygen company. Low and behold, it is the Medicaid Waiver worker. WHAT?! They were not supposed to come until next Monday...at least that is what my phone said. I have been waiting for this day for a month and a half now. Surely, they are here on the wrong day? Nope. I ushered her in with a shocked look on my face and told her to sit down. I did not have a single thing ready for our meeting, but I was not going to lose my appointment. I knew that they could not fit us in again until the end of June. Needless to say, I scrambled and stumbled around trying to gather information for the caseworker and the nurse that showed up later. Cole put on a terrific show and they saw us in all of our glory. He hit me, spit on me, broke two things, threw other objects, spilled stuff on my rug, yelled at me to take off his clothes, etc. He proved loud and clear that he is a handful. At the end of the meeting, the worker said that she had no doubt we would be approved and she has never had anyone that has been rejected that she personally felt qualified. That was wonderful news to my ears! A definitely different Cole than the charming, flirtatious boy from Miami. It will still take some time to get all of the nurses lined up and interviewed, but we are thrilled! I asked her advice on what agency to go with. None of the agencies she prefers are covered by my insurance or have school contracts, so it looks like I will be working with more than one agency. We still do not know how many Personal Care Assistant hours we will have, the Medicaid board approves that. Hopefully, it will be at least 4 hours a day for the weekdays. Maybe I can start cooking more than twice a week again! :) The nursing will only be 240 hours a year, which means less than a day per month and you have to access hours each month or you lose your place on the waiver. However, that is at least one night a month that Brian and I could go somewhere and know that we had a totally qualified, free caregiver for Cole.

We have noticed on the depakote that Cole has reverted back to not eating. Seriously, he could take or leave food. We are right back to where we were before the g tube, but bless it-we are not in the hospital for failure to thrive. He is not dehydrated and is still getting all of his meds and supplements. It really is one of the smartest decisions we have ever made for his care. I am really worried about him not eating again. This means re-adjusting the diet, probably re-adjusting the Keppra and a whole bunch of other things. How am I going to know what is really making the difference? It is hard to tell when you change a bunch of things at one time. Get this, here comes the contradiction...depakote is supposed to be an appetite stimulant. Hey, we are talking about Mini Hulk here, he defies all "norms". The doctors are as confused as I am and the only answer that I am getting right now is to liberalize the diet he is on right now, which is more of a Modified Atkins. They want him to eat more fruit and starchy vegetables. He's not even eating his favorite foods, how am I going to get him to eat more than usual?

Right now our treatment is:
Keppra 800 mg (400 morning and night)
Depakote 500 mg (250 morning and night)
Nano VM Multivitamin powder (replacing his Calcium, magnesium, old multivitamin, K phos)
Carnitor 7.5 mL
Vitamin D 800 IU
and a skewampus version of the ketogenic diet

I know that it is not the multivitamin causing this because we did not start it until yesterday. He has not really eaten since we started the depakote, so I can only name it as the changing factor. For something that sometimes makes people gain too much weight, it sure is working opposite on my boy. The doctors said that I should just tube feed him, but I am not ready for that yet. Just because he has a g tube doesn't mean that I have to use it to feed him. I think that he has the potential to just become anorexic and stop eating completely. It has happened to two of my close friends children, why not?

Really, there are so many things lately that are supposed to be working one way and end up doing the opposite. SO, I guess the theme of this week is contradiction. Maybe next week can be something like beating the odds? We have almost gone a full month without rescue meds for a status seizure! That, has not happened in over a year. Which is kind of hilarious, because we are supposed to be sending shirts to his seizure dog every week. For the first time ever, we WANT him to have at least one big seizure a week! The more shirts we send, the better they can train the dog. Cole is also speaking more clearly than he ever has and is picking up new words daily. We were worried the depakote would impair his speech. My little contradiction:)