My grandpa used to say that on occasion.
He failed to mention the steel-toed boot wearing things that tend to kick hard.
Thursday was a good day though.
So, amongst other things, the van died. The timing could have been better I suppose. I turned a corner and it just stopped running. I got it going again, limped to a parking lot, called AAA and got towed to a repair shop. While waiting for the tow, I called to see if the other car was fixed yet. Last week, someone graciously offered to fix my heater issue. Unfortunately, intermittent problems are the hardest to find. It wasn’t fixed, BUT, it is driveable, and better than a rental at the moment. I can always “Fonzie” it for a while.
I did, however, wind up buying a lotto ticket.
I figure I’m due.
The past few days have been fairly low compared to Monday’s fireworks. We’re getting pressure to move on to the next facility. The best facility in the area won’t take her because she’s not far enough along yet. The second best facility in the area won’t take her because she’s too young. They wouldn’t even give me a tour. It goes downhill from there.
Basically, we’re having the same problem that we had before. We are seeing activity. The medical staff is getting mixed results.
Frustration is the word of the week.
Thursday morning, however, we got a little bit smarter. The night before, Sandi had toured some of the suggested facilities, and she took her camera with her. She still had it in her bag up at the hospital that morning when Anissa got active. What she caught on tape was huge. She was talking to Anissa, who realized that she was being recorded. Anissa then reached over, grabbed for a pillow, couldn’t get it one way, got it the second way, and covered her face, hitting Sandi with the pillow in the process. Another recording showed Anissa taking direction and doing activity on both sides of her face.
It might seem minor to you.
To us it was huge. It showed awareness, problem solving, independent action and a whole mess of other things. And before anyone asks, no I won’t youtube it.
Sandi then proceeded to show it to every person who came into the room.
We *THINK* their perception of Anissa changed again.
They saw progress.
Once again, the medical staff not listening to the care-givers. This broken record really needs to stop.
So, we’re still in the hospital, in search of a sub acute care facility until she can handle 3 hours of therapy a day minimum.
We have had 24 hour spans where we have more activity than that. Just not consistently. Right now, the pattern is: GREAT day, sleep day, pretty good day, GREAT day. Repeat as necessary. Of course, it does appear that she’s recovering quicker after activity, and it’s only been a week, so not enough to learn the pattern yet. We have felt twinges in her right leg. She’s trying to move it. She’s also starting to open her mouth at appropriate times to talk. Still no sound though. Still incredibly tired/weak.
I spoke to a friend last night who gave me some pretty good advice. We’re basically at the point that the kids could help out more with Anissa, BUT, I need to do it right, and protect them as well, physically and emotionally. I’ve been spoon feeding them updates. The positive ones. Trying to keep them somewhat updated and their spirits up. We’ve been doing “good night calls”, which is difficult for an adult, let alone a child, but I want Anissa to be able to hear their voices. My plan is to start with the oldest first and take him up one on one. The drive should give us a bit to talk privately on the way there and back. He’s seen the video, and had a few questions. I’m hopeful there will be more, but you know kids. If that goes well, we’ll try the middle one, then the youngest.
Technology being what it is, try buying a tape recorder in a store these days. I bought a little boombox the other day with plans to record the kids at home continuously in various situations so she can hear “our home”. When I got it home, I realized it wouldn’t record ambient sound. Ok, no big deal. I’ll just buy a tape recorder. I want something I can leave in the room safely so that if it does get stolen, it’s a no big deal $20. So, I went to Best Buy and explained what I wanted. They tried talking me into a digital thing. I told him I really wanted a tape recorder that can record ambient sound. But you can do so much more with a digital recorder. I realize that, but I want to record ambient sounds in my house with a tape recorder. A digital recorder would be better for that. Are you trying to hunt ghosts?
Um, no.
My wife had a stroke and I need to record my kids continually and not worry about the thing growing legs in a hospital.
Oh. Um, we don’t carry those any more. Try Radio Shack.
Apparently the art form that was making mixtapes is truly lost.
At home, the kids are holding up as best as they can. I’m sleeping in 2 hour increments, and waking up every so often to check on the kiddos. A great friend is coming over Sunday to help me put up some outside Christmas decorations. I just want to give it more of a semblance of a festive look. I’m hoping that will be a distraction of sorts for the kiddos.
Please pray for stamina and patience. Anissa needs it. I need it. Those who are here with us need it.
on Dec 11th, 2009 at 4:17 pm
Thinking so often of you guys and saying many, many prayers. There are a lot of things I have doubts about – Anissa is just not one of them. She CAN pull through this. She WILL pull through this. I don’t have an ounce of uncertainty. The patience part is the hardest – I can’t even imagine the frustration of waiting, of wanting so much to happen so quickly. But she is making huge progress – doing things that a week ago you didn’t think were possible. And YOU are doing everything right. She is quite lucky to have someone that is advocating for her as strongly and as passionately as you are. YOU are amazing!
on Dec 11th, 2009 at 4:25 pm
My Sony CD alarm clock player broke. I went to Best Buy to get a new one and it was the Hunt for Red October. Everything was alarm clock iPod bays. I asked someone to help me and the salesman said, “Why do you want that?” Lord.
Maybe to play my hundreds of CD’s? I finally found one but it was sorta ugly and seems to be made out of Kleenex and rug fibers.
They are obsoleting us right into insanity.
News sounds huge for only 3 and a half weeks. Patience is something only tortoises seem to posess. We humans want it all better NOW. Hang on!
on Dec 11th, 2009 at 4:57 pm
You are amazing, I take my hat off to you. Sending the bestests of vibes from Amsterdam, The Netherlands.
on Dec 11th, 2009 at 5:01 pm
I think the camera was a great idea. As far as a recorder, maybe ebay or craigslist? People are bound to still have those. I’m sorry the sales people were giving you a hard time. 🙁
And… I’m so glad you put that disclaimer on there about youtube. I can’t imagine anyone having the nerve to ask for that, and I would have been HORRIFIED to read someone trying to invade Annisa’s privacy that way.
Good thoughts coming your way.
on Dec 11th, 2009 at 5:21 pm
I have a small tape recorder I can send you, so if you don’t find one at Radio Shack, let me know and I’ll send it immediately. I don’t care if it gets lost or stolen and I will never need it back. Just say the word.
createwithme
AT
hotmail
DOT
com
on Dec 11th, 2009 at 5:25 pm
Thanks so much for sharing the update with us. Please know that we are sending all kinds of hopes, wishes and prayers for continued improvement. Anissa – we love you!!!
on Dec 11th, 2009 at 5:41 pm
Nothing but prayers, white light, and thoughts for all good things coming your way! Keep thinking outside the box to prove to the medical staff that she is making progress… they do things on their timeline, and read the chart to look for “progress” in their terms. What you guys did to show them what you’re seeing is brilliant.
Great idea to record the ambient noise, and how weird is it that the technology of our youth is disappearing so quickly? We might still have a handheld microcassette recorder and microcassettes, so if you don’t find anything, email me.
on Dec 11th, 2009 at 5:41 pm
Thanks for the update. the recordings sound lilke a great idea. I hope you find your recorder soon!
on Dec 11th, 2009 at 5:53 pm
I will be praying for you, Anissa, and your family–praying that you will feel comforted, encouraged, and will find a deeper understanding of Jer. 29:11 than you ever could have otherwise.
on Dec 11th, 2009 at 6:19 pm
Prayers coming.
on Dec 11th, 2009 at 6:21 pm
If you are still having trouble with the tape recorder, you might want to see if your area has an organization called Freecycle.
on Dec 11th, 2009 at 6:57 pm
Ah, the “too young” thing. I ran into that with my first husband. He was just 30 and most nursing homes wouldn’t consider him.
Do you know a social worker who works with the area’s facilities? That’s how I finally find a placement. A friend who was a social worker started asking around where she knew administrators.
Yeah, it’s a long shot but it worked for me.
on Dec 11th, 2009 at 6:58 pm
Hi , just started reading about your family, bravo brother you make us wives have hope in our husbands that they too could handle things if something were to happen to us .
Is there a cause of the stroke , my sil was just diagnosed with APS which can cause strokes like this even for the young ?
Hope you can sort things out for her care , you are all in my thoughts ,
Chris
here is a link to an analog tape recorder $24.99
http://www.olympusamerica.com/cpg_section/product.asp?product=1206
on Dec 11th, 2009 at 7:23 pm
Praying!
on Dec 11th, 2009 at 7:58 pm
continued thoughts for you. all the love i can muster.
on Dec 11th, 2009 at 8:12 pm
Not a day goes by that I don’t stop and think about you all!! XOXO
on Dec 11th, 2009 at 8:33 pm
I wish I had an answer about the tape recorder for you. All I can say is, maybe try amazon if you have a few minutes (riiight….) but you might be able to come up with something.
Praying for you all – hope you ALL get some rest, and patience, and stamina…
on Dec 11th, 2009 at 9:26 pm
My mom is a nurse. When I was 10 years old I ended up with Guillian Barre Syndrome. Mom knew the signs, symptoms. She told my pediatrician FIVE TIMES. He said I just had the flu. Finally after being taken to Children’s Hospital for the 3rd time I was automatically admitted. (I couldn’t keep anything down, not even fluids.) Finally after a few days they brought in neurologists to do a test. They called my mom outside. They said, “We think we know what’s wrong with your daughter.” She said, “Yeah I know already.” All snotty they said, “And what do you think it is?” She said “Guillian Barre.” They were shocked. And from that moment on, for the next 30 days I was in the hospital, they listened to my mom more. She never left my side.
So, what I’m saying is, I understand where you’re coming from. Stay strong and keep pushing the hospital staff. Caregivers are there ALL THE TIME. They see the changes. Even the little ones. And all the changes matter.
on Dec 11th, 2009 at 9:37 pm
Please see if you can talk to the head of rehab dept and get him/her on your side. That’s how I got my husband accepted after his neuro said he should be “bed confined to a nursing home.” And also please visit (or have someone else visit) the facility after the full-time day staff goes home – maybe around 6-7 PM. Once the administrative staff goes home sometimes the care goes south.
on Dec 11th, 2009 at 10:18 pm
Oh I wish I could be closer to at least help decorate your home for Christmas. Those are the little things that matter so much during times like these. I just have to say how beautiful it is to see a family like yours so united and strong during a time like this. I have never met your wife and I was only new to twitter days before your wife had her stroke. Ever since I tried to figure out what “prayers for Anissa” was all about, I have been checking for updates and reading about your amazing family. It has been so inspiring for me to read your updates and see all of the love you have for your incredible wife and your beautiful children. I really don’t have any doubt that Annisa will make a full recovery. The road may be long but it sounds like she is determined and she WILL get through this- despite all of the traditional doctor stuff that says otherwise. I ask that you please send me an item that each of your children would like for Christmas. I will try to grant their wish (material, toys-r-us kind of gift, of course), as it is the least I can do….My prayers are with you. Lots of love to you all xo liz
on Dec 11th, 2009 at 10:43 pm
Whatever prayers you need, I will send.
on Dec 11th, 2009 at 10:47 pm
Peter, every kid and family is different, and I have absolutely no doubt that you know what’s best for yours! We grown-ups do tend to get caught up in protecting kids and are often surprised at how much they already understand or have the capacity to deal with. Sometimes the unknown is MUCH scarier than reality, though. I have no doubt that if you explain that she can hear and see them even if they don’t see a visible reaction, they will be fine. I can only imagine how incredibly wonderful a cuddle with the kids would be for all of you. It would bring peace enough to let her rest AND huge motivation to keep pushing forward. You are on the right track!
on Dec 11th, 2009 at 11:10 pm
I didn’t read all the comments so forgive me if this is redundant…try Staples or Office Max/Depot for a microcassete recorder. WAY cheaper than digital and great for ambient sound.
Keeping you all in our prayers.
on Dec 12th, 2009 at 12:55 am
We had two vehicles go within 3 hours of each other a few weeks ago – our teenager was driving them both times. In about 10 years, that will be a LOL memory – but it was harding doing all the things a big family needs to!
We bought a little 2 hour tape recorder for our son’s guitar lessons – you can listen with ear plugs. We got it from wal-mart – I don’t know if that’s what you’re looking for, – it’s about 6 by 4 inches big.
You guys are in our prayers!
on Dec 12th, 2009 at 1:20 am
I and thousands around the world are constantly sending over positive, healthy, restful, active vibes. I hope they’re working for Anissa & for your family & friends.
on Dec 12th, 2009 at 2:47 am
E-mail me your address and I will ship you a tape recorder – I have a radio w/tape player that records collecting dust in the top of my closet. Lots of prayers and thoughts for your amazing wife and family being sent your way…
on Dec 12th, 2009 at 2:52 am
I have a small handheld tape recorder I can send you if you don’t find one. I used it in college to record lectures, so I think it’s probably what you’re looking for.
on Dec 12th, 2009 at 3:17 am
Continuing the prayers and good vibes —
on Dec 12th, 2009 at 3:21 am
You are one smart man. She will respeond better to what she’s used to. Prayers for you all.
on Dec 12th, 2009 at 5:37 am
Prayers and positive thoughts. It’s the progress even in small increments that adds up.
on Dec 12th, 2009 at 9:11 am
Peter!!
You can go to Amazon.com and order a small portable recorder…here is the link.
https://www.amazon.com/s/ref=nb_ss?url=search-alias%3Daps&field-keywords=Tape+Recorders&x=13&y=22
I used one in college and for when my kids were little learning to talk.
If you want, I will even pay for it. Just email me. I will be happy to do it. Really.
on Dec 12th, 2009 at 9:25 am
would those little micro – cassette recorders work? If so, give a holla, our firm went digital and I’m sure I could find one of the old-school versions lying around.
The death of mixed tapes….so sad.
on Dec 12th, 2009 at 9:53 am
My prayers for your family continue EVERY DAY. Thank you for the updates, I am amazed that you find the time or energy but thank you so much. b
on Dec 12th, 2009 at 10:01 am
I find myself thinking about you crazy Mayhews all the time. I say a prayer everytime you come to mind. I’m sorry to hear about the van and the lack of heat in the car. I wish I had tons of money to but you new ones and send Anissa to the best rehab in the world. Anissa has had such a huge impact of my life over the past couple years. She helped me so much without ever knowing. I am always amazed at her faith and that has made mine stronger.
Keep up the great work Peter, you are the best.
on Dec 12th, 2009 at 10:19 am
Maybe someone mentioned this already but try looking at The Goodwill or Salvation Army thrift stores for a tape recorder. I know that I have seen them at places like that. Of course, then the problem becomes finding the actual tapes I suppose…..
So glad to hear she is doing better. I think of you all often. I can’t imagine what you are goiong through.
on Dec 12th, 2009 at 10:28 am
Maybe one of those weirdo spy shops?
I’m still thinking about Anissa each day. It is a sad situation that the middle-of-the-road patients get when choosing rehab. Only those on the low end of the spectrum get into the best facilities, those on the high end are watched and cared for in a step down facility, but those who are making progress on their own are highly ignored in my opinion.
I remember when my mom only qualified for light home care, occupational and physical therapy. She was having a good day on the OC therapists first visit, so she deemed her acceptable and decided she needed to come back only once and have her sign her all clear papers. Needles to say, I flipped out. So, Peter, keep flipping out and insist that she gets what she needs!
on Dec 12th, 2009 at 10:31 am
Praying for you all. Thank you so much for the updates!
I need to check my attic, I am pretty sure I have one of those up there.
on Dec 12th, 2009 at 12:32 pm
Meijer has the tape recorders you are looking for. If you don’t have one in your area, try meijer.com Praying for your family!
on Dec 12th, 2009 at 5:07 pm
I would definitely try Radio Shack for that tape recorder. They had them when I was there last (although that was some time ago).
I am praying for your family!
on Dec 12th, 2009 at 11:43 pm
Oh Peter, I am sorry about the car. You are DEFINITELY due for a lottery win!!
Glad to hear the news about Anissa. Stay strong with the doctors and nurses. I love 20 minutes away and if I need to come there and kick some medical ass, let me know. I am happy to do it for your fabulous wife and family. 🙂
on Dec 13th, 2009 at 12:17 am
I have one of those mini cassette players that you can talk into while you’re driving in the car that have the the little baby tapes that journalists use. You know what I’m talking about? THey sell them at probably Office Max or Staples. If you would like, I will mail it to you to have to make recordings. Just email me. It’s easy to use. I’d like to help.
stephanieelliot@comcast.net
aka Manic Mommy
on Dec 13th, 2009 at 11:28 am
Hi,
I can’t tell if you found the tape recorder or not. I have a micro-cassette recorder that I used to use for Interviews (it is MAX 3 years old). I know you can still buy tapes for it.
I would be pleased to send it to you along with all the tapes I have. You have my email.
Peace to you. You are doing and awesome job! Make sure you take time for you too.
on Dec 13th, 2009 at 4:19 pm
Stamina. Patience. Peace. Strength. Love. Healing. Prayers for all coming your way.
on Dec 14th, 2009 at 2:25 am
I have 2 mini-boomboxes & a walkman sized tape player, and they all record. I probably even have a few blank tapes around here somewhere! I know I got the mini-boomboxes @ Walmart, just within the last year or so & I’d be happy to put one/both in a box and send to you, but if you want it sooner, you may try Walmart or Walmart.com (they’ve started carrying more online & less in-store.)
on Dec 14th, 2009 at 9:51 am
Peter,
Just getting caught up on what’s been going on. Our prayers are with you and Anissa, the kids and the caregivers assisting you. From all I’ve read you are doing a wonderful job, keep hanging in there. I was thrilled to read Anissa’s reaction to seeing Nathaniel. I’m sure it was a great gift to both of them. I saw some resistance from medical staff with Erin as you may have with Peyton. You are Anissa’s advocate. I’m sure that the staff hears you, but you may need to push and push a bit more for them to listen to you. You are her voice for now, do not be shy because you know she wouldn’t be. God Bless and Lots of Love from our family to yours.
on Dec 14th, 2009 at 11:01 am
I think this cassette recorder might be what you need. http://www.kingdom.com/ProductDetails.asp?ProductCode=C13AV My mother owns one and we bought one recently to use for homeschooling. They are hard to find these days, but this one is reasonable.
Jen
on Dec 14th, 2009 at 12:31 pm
Praying for you guys constantly.
on Dec 15th, 2009 at 11:23 pm
I originally was going to comment to say that I have one of the micro cassette recorders and a few tapes you could have but I see you have mulitple offers already. Hopefully you’ve been able to procur one and are already using it to bring “home” to Anissa. Praying that Anissay continues to show them that she is one heck of a fighter.
on Dec 17th, 2009 at 11:13 am
I continue to pray for Anissa, you and your kids.
Don’t know if you have a tape recorder yet, but if you haven’t found one, e-mail me and I have a microcassette recorder that will record ambient noise quite well. I use it when I interview someone for an article just to make sure nothing gets misquoted, but I’d love to let you have it if it can help Anissa.
Let me know if you want it.
Dawn