Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, May 03, 2007


Wow...Looooooooooong day here today! First, I had a meeting with a public health nurse and new social worker about the TBI waiver. (traumatic brain injury) I am in LOVE with this man. Well, maybe not HIM, but that he is here to represent ANGELA, and HER NEEDS, and not the needs of the county. So they have all the medical documentation, along with everything from the psychiatrists, etc. He is recommending her for THE HIGHEST level of the waiver, called a TBI-NB waiver. Meaning Traumatic Brain Injury -Neuro Behavioral. This will about TRIPLE her funding! A certain percentage can be used to pay me, a certain percentage for weekend respite care, a percentage for 'stuff' (we can fence that *^&$# pond in our back yard...or fill it in!) A certain percentage for training (Like the conference PLUS a PCA to go with us!!!) Oh, and ANY needs that the social worker deems immediate necessities. He wants all our doors to be hardwire alarmed with a panel that talks and tells you WHICH door "basement walk out" or "Garage service door". We could do things like put in taps that CANNOT scald her, handrails in the shower, a certain type of shower head, etc. (he wasn't saying she needed those things, just listing them as examples.) OMG, that FOUR HOUR meeting MADE MY WEEK!!!!!!

Then there were the phone calls. HOLY COW I've heard from everyone today! Without repeating it all, here's the plan....

Tuesday 8:30 pm to the hospital for a full-spine MRI. We'll not only be ruling out AAI, but checking for an other anomolies along the way. Ths is to rule out her problems being orthopedic vs. neurological. This is a 2 hour scan. We're doing it late so I can give her nightime meds and she sleeps through the whole thing instead of having to sedate her with an IV.

Weds at 12:30 arrive at Mayo Clinic for check-in. 1:20 meet with the neurosurgeon and neurologist. When that's done she'll be admitted to the hospital, stay overnight then Thursday morning will have an SPECT and Angiogram. (and a couple other tests that I've now forgotten the name of.) THESE are THE TESTS that we need done. When these are done we will know if we're going to Boston, Standford....or worst case scenario....nowhere but to sit back and wait for her to have a stroke.

So that's what I know. I'm having a good day today because I have a new love in this new social worker. He said things to me, or asked questions that I'd been feeling for months, but never been able to put words to. Things like, "So...when was the last time you were able to let your guard down and just be you?" Ummm HELLO! 11 years ago when she had her first stroke!

So, that's our day. We'll see how next week goes.


Jackie R said...

Leah, Our thoughts and prayers are with you guys right now. Like I said if there is anything I can do just let me know. Jackie R.

jharootunian said...

Wow Leah that sounds like great news. Someone on your side! I hope next week goes as planned and they find good news for you.
Jenny from downsyn