Mom Update, November 30, 2012, Friday

Quick update. Mom is still in the hospital but was moved to a step-down room (6213 -- her lucky number is 13!) yesterday. She can have visitors 24 hours a day. So now for the nuts and bolts---dare I say she seems better each day? I do dare. I do proclaim, in fact, that she is better each day. Where that will lead, only God knows, but she is better each day. Small increments. Baby or neonatal steps even...but better.
Her speech is still slurred and when she wants to say anything that she is initiating---not part of the context of a current conversation with her---the words are 98% gibberish, not real words. It's funny though because even someone's gibberish between loved ones still has meaning. She still uses the same tones and volume of voice to say affectionate things or to yell at us in frustration even. She and I had a most difficult morning today...she is frustrated and misses dad terribly...she once told me that one of the things she loved most about dad (from before they were married) was that he made her feel so secure. She cries terribly and inconsolably when he is not with her in the hospital (though he spends 9-10 hours there a day).
She ate all her breakfast for me---all of it!!! She sucked thickened (nectar thick) orange juice and milk through a straw (to a count of 5), she ate oatmeal and pudding from a spoon and she chewed and swallowed that tofu looking french toast stuff too! She cried on and off for dad but when breakfast ended, she really became ornery. Calling me names and telling me to, "Shut up!" That phrase comes out loud and clear!! No matter what I did, she was gritting her teeth in anger --- I remember in special education classrooms I'd worked in that the kids act out the most with the person the know can take it and still love them anyway. I guess I am that person to her. Lucky me! The good thing and amazing thing is this: about an hour after she calmed down, she called my name and said, "I'm sorry." Then we told each other we loved each other. The amazing part to this is that she knew what she did and she knew she wanted to apologize...she was so aware. Her memory wasn't this good before.

Mom tries to sing and to count with us when we do her range of motion exercises too. Today she counted in order at one point and out of order at another point. She mentioned numbers in the 90s and 100 (not in order). She tries to sing with me when I sing songs I used to sing with my pre-K kids about the days of the week or the months in a year.
Anthony came and did physical therapy with her while I was there and he makes me cry to watch how skilled he has become in working with mom. He puts many of the physical therapists I've seen work with mom to shame. He got her to move her right foot quite a few times and her fingers on her right hand once. He works the muscles in her shoulder near her neck and almost does a pressure point stimulation down her arm to wake up her muscles again...and it works every time. He does something similar down her leg too. And of course, he gets her laughing so much!!

Dad was able to get mom to imitate sticking out her tongue which is monumental too! Many times! Dad also was able to get her to smile, putting her lips and mouth the same way his was, but not able to show her teeth, though she tried to.
Con and Sammy and Anthony Michael and Gina and Terry and Jean and Claudia all came all day on various days of the week or at night to be with mom. Mom spoke on the phone to Con and Claudia and Aunt Carol today. Actually maintained a conversation---granted, not big sentences, but she managed to say, 'hello' and 'OK' and 'so long' and other phrases in context. Mom also enjoyed a visit from Uncle Mike, her brother too this week.
Claudia, ever the innovator, is already working on ideas on how to help mom communicate. Since neither of her 2 hands work well enough to write, Claudia came up with the idea to teach mom to use a lighted pointer flashlight (it sends a red beam of light) to point to cards or words or phrases in order to communicate. She is also making a social story for mom to use about missing dad.
Though I have made numerous calls to the neurologist at the hospital, he hasn't called me back yet. His receptionist wanted to know what exactly I wanted or could want to talk to him about??? She was surprised I asked to speak to him. Oh brother, some things never change. And one person comes in and says one thing and 2 seconds later someone else comes in and says the exact opposite. It is what it is. Advocacy, advocacy, advocacy.
We are up to finding a facility for mom to go to for rehab. Or, we may opt to take her home for rehab. We aren't sure yet. Please pray for guidance. Thanks so much.
A year ago today, it was a Friday and December 2...but it was this Friday, this day that we took mom back home after being in a facility for 18 months. One of Claudia's students came to the colloquium she and I did on mom's story at the college the other night. After he left, he wrote her this text message. It puts everything in perspective for me... here it is:

"I just finished filling in my wife about tonights lecture/teaching & showing ur web site. Family is our world. I can't describe how much ur story touched us. Ur family is just inspirational for the dedication, sacrifice, & distance u'v gone for ur mother. Honestly, I will NEVER forget tonights lesson. It is easy to see the passion ur sister & u have for teaching as well as helping & caring. My wife is very much the same, but working 10 yrs. at the Flower I didn't c other teachers like that & I think it's sad. They try to make the kid adapt to their way of teaching instead of trying to adapt to the kid/s. I was so sorry to hear about ur mom at the end, she will be in my families prayers. No matter what happens though, because of ur families love & commitment, she lived happier than ever for 2+ more yrs despite what the professionals gave her. In doing so ur story is going to safe countless others, children & elders, that I know."
"Love one another" John 13:34

Mom Update, November 28, 2012, Wednesday

Just a quick update. Found out today that mom actually experienced a major stroke the did damage to the left parietal lobe of the brain (damage to the left parietal lobe can result in what is called "Gerstmann's Syndrome." It includes right-left confusion, difficulty with writing (agraphia) and difficulty with mathematics (acalculia). It can also produce disorders of language (aphasia) and the inability to perceive objects normally (agnosia). The stroke was caused by a large blood clot. We've been in a catch-22 situation with this because mom having had a brain bleed in the past, could not take blood thinners because of a risk of another bleed. Now, she is on aspirin as a blood thinner, a cholesterol drug to prevent plaque build-up and an antacid to counteract stomach problems from the aspirin.
Her blood pressure fluctuates between 150-172 on the top so she may soon need blood pressure medication.
Mom has difficulty swallowing and is not allowed to drink liquids of any kind yet. She does swallow pureed food though...more today than yesterday (10% yesterday and 50% today). She may need a feeding tube again in order to supplement her caloric intake so that her energy level increases.
She continues to either speak actual words but slurred or speak gibberish (non words). She gets speech therapy which focuses on cognitive skills (trying to speak or point to objects...) and swallowing (strengthening the muscles in her neck). Because she can't swallow well, she is beginning to pool the natural fluid from her sinuses of her head in her throat and chest. She is being monitored for signs of infection through blood work.
She is not well enough, awake enough, or active enough to remain in the Hospital's Rehab Center so we will be deciding either on a sub-acute skilled nursing facility for rehabilitation or taking her back home to receive therapy there.
She receives physical therapy in the form of range of motion exercises. She was unable to sit on the side of the bed on her own.
We continue to visit her and work with her when she is awake...singing, talking, counting, playing with the IPAD apps, listening to music, watching TV and doing range of motion exercises with her. She knows us all and sometimes uses our names. She still can say, "I love you" and "I want to go home" among other things. Our mission continues to focus on loving mom as we have all along this ordeal in her life. It's always been about how we can make her life, whatever condition she's in, better through love.

Will keep you all posted. Thanks for all the prayers.
"You need to persevere so that when you have done the will of God, you will receive what he has promised." Hebrews 10:36

Mom Update, November 25, 2012, Sunday

Hi Everyone,


I hope your Thanksgivings were wonderful. Ours was. However, I am writing with some bad news. Mom had a mini stroke (or strokes) today. Here is her status: She used to be weak on the left side only but now is weak on both sides. She used to be able to speak and be conversational but now her speech is predominantly jarbled and slurred. She became very disoriented and confused when she first woke this morning---didn't know any of our names or where she was. Terry and dad found her this way and called Claudia. Claudia and John called the ambulance and mom was brought to the hospital.
We all arrived there together to be with her. Once we arrived there, she was starting to improve a bit...spoke in understandable words (but slurred) maybe 15-20% of the time, began to move her right arm and leg...but then regressed back to jumbled speech and no movement and then progressed back to moving and talking somewhat understandably again.

Blood work came back good, she had a minor urinary tract infection (not the cause of her condition at all this time), and her CAT Scan came back fine (which means no bleeding, clots, aneurysms...). MRI is planned for tomorrow (tried today but didn't have the exact name and brand of the coil in her head so radiology wanted to be safe and wait---compatibility of machine and coil vary and can result in further injury if not the right match). MRI is expected to show where the stroke occurred, how bad it is, and how many occurred. Then...on to rehabilitation... (as I write this, I realize I didn't ask about the shunt malfunctioning and/or fluid on the brain again). They hydrated mom and this should help her recover more because the neurologist explained that there is a lack of fluid in the body and brain following such an occurrence. The neurologist also said that it is a good sign that her abilities are inconsistent because it means she is progressing and not regressing.
We kept mom active and alert all day...taking turns being with her (only 1 person at a time allowed). My philosophy was that we needed to keep what was functioning well already, functioning; so that what was dysfunctional could 'kick in' and come alive again or so that other parts of the brain could begin to 'kick in' and compensate for permanently damaged areas. We kept her talking (in her own way), counting, playing games, naming items and people...even reading! She did all that midday and into the afternoon. As the day went on, she was tired and agitated and upset and cried a lot about being in the hospital. She was inconsolable.
Mom's receptive language (ability to understand others) is good. It is her expressive language that is lacking (her ability to talk, point, gesture...to communicate). She was able to lift both legs and arms on command for the neurologist when he came. And she was also able to smile (she couldn't do that all day until he came). She couldn't stick out her tongue though. She kept asking (in her jarbled way) why she was in the hospital and what happened to her and when she could go home. She told dad she loved him and was sorry for putting him through all this.

I don't need to ask for prayer because I know you all will pray...but here's a specific list, if I may be so bold to ask... pray (obviously) for mom to heal, for God to hold her in the palm of His Hand, for comfort for dad, and for the strength for all of us to do what we need to do to help her recover (whatever that may be) and to not quit 5 minutes before the next miracle happens.
I won't do a daily email post, just an occasional one to update you. Thanks for the support and prayers.
"Even when I walk through the darkest valley, I will not be afraid, for you are close beside me." Psalm 23:4