Coordinating services and B-12 Update

Insurance waiver, title 19, case managers, coordinating services, qualifying waiver services, respite service providers and endless miles of yellow tape. This is my life, my current lingo and my future to do lists for navigating through a waiver program. Despite all the yellow tape the waiver program is one of the best things about the state of Iowa. No matter what your income if your child meets certain criteria you could qualify for a waiver program that would waive your income and provide you with title 19 (medicaid) and other services pertaining to the child's needs. This means we will finally be getting some help in paying for Lochlan's treatment and we will be able to afford more treatment for him. Hallelujah! We will now be able to provide Lochlan with ABA Therapy (as soon as Homestead can coordinate the services), speech therapy, more OT and also respite(which means mom gets a BREAK!) Could it sound any sweeter? Luckily enough we have a great case manager who is just as passionate as we are in getting Lochlan the help he needs and deserves.

An update on the B-12 Injections

We have had 2 more injections since my last post and unfortunately I am unable to say that things continued to get better. I do believe that the B-12 is working-I am having some trouble injecting it into the fat.(the boys are soooo skinny Sully 33lbs Lochlan 26lbs) I noticed today just after I gave them the injection that both boys' urine was a slight tint of pink-which means they already excreted the extra that was to be absorbed over the next couple days. Aaarrgh! I will try to be even more careful the next time and will try again at an even smaller angle. Sully continues to verbally stim and it is causing some real trouble especially at meal times. He is still very non compliant and seems to avoid following directions with asking questions or justifying why he needs to continue doing what he is doing. He has also started to tell me that I am "irritatin' him"..which doesn't go over very well and he ends up apoligizing to both Jesus and Mommy for being so mouthy! He is becoming more rigid every day and is now requesting bacon for every meal. Despite his chattiness at the table and unwillingness to eat what I have prepared for him, he is keeping weight thanks to the neocate junior. Hopefully soon we will get the results of his ONE (optimal nutrition evaluation) test so we can have some multi-vitamins compounded for him.

Lochlan had 2 really good days last week and then started slipping back into his crisis mode of falling apart and then engaging in self injurious behavior. He has also started to bang his foot on his chair and poke his eye when he is in a meltdown. We have had to put his helmet on him and then put him in his high chair with 5-point harness just to keep him safe. I am praying that the eye poking business stops as I have no idea how to intervene without giving physical contact. Currently we are just ignoring this behavior and monitoring it so he doesn't harm himself. It has only happened a couple of times thank goodness. On a good note...He is continuing to greet his dad and I and with "hi mommy!" and "hi daddy" spontaneously. He also spontaneously said "what happened" today, normally he would only echo this but today it was out of nowhere. He has been chattering more and more. Not much we can understand, he is even trying to vocalize when Sully is singing. He will move his little head back and forth and it is sooo sweet. Speaking of sweet-Lochlan has started to potty in the toilet before bath- he has done it twice now. I think he is just starting to figure the whole potty thing out. But....I will save our potty sagas for another post.