Friday, January 25, 2008

January 24th, 2008

Kinnick was release to come home last night around 9:30pm. She has bad diareah, but she is still on 1/2 lt oxygen satting in the 90%'s. We're happy to have her home.

What's next?

Kinnick and Carver will get their Synagis shots today to avoid RSV. My home heath nurse called in sick today, so hopefully they will be able to send someone to give the shot today. Today is the 30th day. You are supposed to get the shot within 28-30 days of the last shot. My home health care agency failed to send last months paperwork in, so I didn't receive the shots in advance. I called to have the shots sent overnight so that I would have them today. I'm still waiting on them. Drives me crazy having to double check people's work. I have so many appts for the babies, feeds, and meds. Then, there all all of the extras - like the trip to Michigan. There is so much to keep track of that it would be nice if I could rely on the health care agency and my Kid Screen case worker to do their job without me having to call and ask if something is getting done.

I still need to schedule an appt for Kinnick's BAER evaluation for her hearing. She hasn't been well long enough to get this done.

I need to get with Carver's ENT to find out the game plan for his hearing.

I'm not sure who is supposed to help me with how I'm supposed to communicate with a blind and or deaf child. So, I need to work on this.

Kinnick and Carver will lose their Medicaid cards 3/29/08. I'm working to keep Kinnick's card. She may qualify for another year due to having a G-tube, Oxygen, and suctioning. Carver will most likely lose his unless I can find someone to help me keep his. I thought with his disabilities, he would qualify. However, it seems like even though he has a disability or multiple disabilities, the state still uses the families income to determine eligibility. If anyone knows how I can keep his medical card, please let me know.

Thanks again for all of your prayers. Please pray for my patience - it's really wearing thin. I've been so frustrated with everything lately. I wear myself out trying to keep up with everything.


Anonymous said...

We will pray for patience. I completely understand that things can get frustrating and I'm not sure that others understand until they've had to be in a situation where they are an advocate for a loved one. I will keep my ears open to see if I can learn how to keep the medical card and I will also talk with our school hearing specialist to see if she has any ideas about communication. When we thought Charlie was going to have hearing problems, she was very good with us!! Do you mind if they email you directly?
Keep hanging in there!

abby said...

Have you guys contacted Early Intervention (the birth to 3 program) yet? They should be able to set up an evaluation in the home pronto and get both of the kids services. I would get on them to do this ASAP. The earlier you intervene (both for vision and hearing issues but also for things like gross and fine motor skills), the better. Also, it gives you a trained eye who can hopefully help guide and reassure you, and also watch out for any problems that K and C seem to be having.

Speedy journey home!

24weeker's Mama said...

Shanon thank u for the info about medicaid. I never knew it's only good for 1 year that means Sam's card will also expire soon.