The Hanna Family

Today was definitely frustrating. After my conversation with Duke I called down to Madera asking the GI Clinic why no one had called me about the feeding team referral for Noah. Oh yes, they scheduled him for NOVEMBER. HELLO! I was like, "Oh that is totally unacceptable. My son has to be seen much sooner then that!" I was so upset. I finally got them to agree to let Noah be seen by the occupational therapist that followed him in the NICU the end of August. We have several appointments set up for the 28th and I'm trying to get her to agree to see him on the 28th. They mentioned doing some "video taping" of him eating to later assess but come on, Noah will NEVER eat on demand so I am going to offer to do it at home and mail it to them in advance so hopefully their behavorial therapist can review it too.

I'm just so frustrated with things. I can't sit around for months hoping my boys make progress, etc. I feel like I'm being stretched thin in trying to get things done for these boys. I guess our only other option is to pursue the feeding clinic in Los Angeles if things worsen over the next few months (right now we are working things out with a great deal of effort and the help of Benecalorie as a supplement) but I was hoping to NOT have to split up their care and have both Madera and LA to deal with. I guess we may not have a choice.

I was also frustrated today with the whole lack of therapy options in the area. I'm going to have to get on Jonah's therapist Friday about seeing him a second time during the week (she wants to see him twice but they have a shortage of therapists and Terrio Therapy is the only place here that does the therapy for children). I've also been thinking he needs occupational therapy for his fine motor skills and I'm going to ask about aquatic therapy too. Every day I work out with Jonah at home but I'm not a trained therapist so there is only so much I can do.

I keep praying that Shane finds a good solution for things as it is often I think we are in the wrong area for pediatric services. Our boys deserve the best and it is so frustrating trying to fight for the services we do get and often feeling like if we were just somewhere with better pediatric care we'd get the attention we need without the ridiculous amount of effort. I do try and remember the good things about living in California, like the Regional Center that has stepped in so many times and helped us with things. California definitely has a lot of programs they offer through the state but our local area is lacking in good pediatric hospitals, etc. and the constant traveling out of town is really wearing on the boys and myself.

Well, tomorrow is another day and as Anne Shirley says in "Anne of Avonlea," (big fan--we just watched the series on Sunday) "Tomorrow is a new day full of promises."