Hi there,
What a perfect Mother's Day! It was amazing. Once again, I find myself falling behind in updating this blog. A lot has happened in the past week and half. I have recouped from the trip and am so much stronger. I have passed all of the driving tests through OT and the driving assessments and am driving again (freedom). I have been able to back down the medications once again without any impact. The doctors are just advising me not to travel under that level of stress again for a while. Believe me that is not my first choice either.
I feel so much like me. I am doing things that I used to do. One of the focuses now is to get this weight off of me so that I have my old body back. It won't be quick but I can do it. You see I had gotten used to eating a certain way while I was training. Okay, when you are training, you can eat anything you want pretty much. Well when I got hurt, I was very used to eating a particular way and my body wanted to continue but I was down on the couch for a few months with my only exercise being that of walking to the bathroom or bedroom. I became an ompa-lumpa very quickly. I am now able to do whatever I want in termed of an exercise program. I am thinking I am going to do more bicycling, I really like it. Once it finally warms us here, I will swim also as I love swimming and water aerobics.
I have been talking with a company about a job and they were interested in me. We started talking just before I left for Alabama. I am super excited about the venture. We are discussing it and we will see what happens. It changed from an full time employee to a four month contract position. I am not certain that this is the right thing for me right now but I am going to sleep on it. For today, I am going to just wait and see where we land. I know they have read my blog and are sincerely concerned about my health to do the job. I may take down my blog as I continue to look for other positions, I don't want my injury to be a stopping block for me going forward. If you would like to get continuing updates from me, please just email me your email address and I will send out periodic emails. I think it best for my futher that I take my history down from the net.
I got to spend some time with my brother. He had lots of his friends and family around him here. He is even talking about buying a house here and living here part of the year and in Alabama part of the year. He can do his job from anywhere, so his options are endless. Please continue to pray for him and his wife and the family as they face the daily reminders and memories with a broken heart. God Bless, Tina
Hello,
We have had quite the week. Avery's viewing was on Monday. Her service and burial was on Tuesday. I wrote a speech and spoke at her service. Normally, I like to speak without writting out the speech. I ususally only have a few notes but I knew I would not remember everything that I wanted to say. My brother thanked me and told me it was perfect. I still have the ability to do things, just not exactly like I did before. Her service was very nice and so very, very, many people came. It was standing room only.
The trip has taken it's toll on my health. I am in pain as I type this. I feel much more foggy or fuzzy than I have in the recent past. I feel much more like I did a few months ago. I was not able to rest and go at my speed. I needed to do just what I needed to do to get through. Now, I will start to make up ground again.
This past week, I saw and met so many people that have been praying for me and following my story. I was so very touched by everyone that came up to me and wished me well or told me how my blog had touched them. I was asked whether I ever found my feather duster several times and my bike riding excursion seemed to bring a smile to everyone's face. I think the hands down winner had to be the Charleton Heston story. I heard from more people about how hard they laughed when they read it. It is really easy to stay stuck on the icky stuff happening to you. Avery taught me to focus on the good stuff and I am very honored that my sharing the good and funny stuff with you have made your days a bit brighter.
Until my next funny story or escapade. Please continue to pray for Avery's parents and family as we all grieve and heal. God Bless you, Tina
Good Morning,
As I type this, tears run down my face. This morning our angel earned her wings. She went home early this morning. Our tears are selfish as we want her here with us. Yesterday was a very precious day. She told me "see you soon baboon". The story was summarized by this wonderful spirit when she said "I love you, my neck hurts". With all she has been through, she has not complained about pain and finally she was even with double and triple doses of morphine. While I want her here, I will take a million doses of my pain just to know that she is pain free now. She is dancing with God. Please say a pray for her parents and the family for them to have strength for the days to come.
God Bless, Tina
Hello,
We are in Birmingham Alabama at Children's Hospital. We got the call to come late Wednesday afternoon. They did surgery immediately upon seeing Avery on Tuesday. Wednesday morning, we thought it had worked at that she was taking a turn for the better. By the afternoon, we were told to come ASAP. We jumped in the car and took off. Mom and Dad drove down at the same time. We drove through the night. It was very tough on my brain and I am paying the price for it. I have been on the heavy medicines for two days now (which I have been off of for over almost two months). I also had a change in my speech for the first time in over a month.
Now for the important stuff, Avery. She is not doing so well. The doctors have said there is nothing more they can do for her. She is on a vent now and is starting to be in pain. The medications are not keeping the pain away. She has told us that she doesn't want to be in pain in more. She is ready to go to Heaven and to see God and her parents are at peace with it. They have decided that they are not going to leave her in pain. They are going to start weaning her down off the vent. Most likely, she will become God's angel very soon. For now, she is still our angel here on Earth.
Last night she told me that she loved me in her soft whispered voice. That is a moment that I will treasure forever. I am not ready to say good-bye but I know that I am only being selfish. She needs to go play like a child for the first time in her life, without any pain, without any tubes, without any tumors, without any restricitions.
Please continue to pray for her parents and their strength through all of this. They have been amazing and a real testiment of Faith. Through all of the pain I have right now from both my head and my heart, it is only minor compared to what they are going through. God Bless, Tina
Hello,
I am having a much more difficult time with the reduction of medication. We are going to slow the reduction down a bit so that I better adjust and hopefully can still make the progress down to zero meds. My focus today (and for much of this week) has not been on me and my getting better. It has been on Avery. I have such a heavy heart. Have you ever had your ache so badly that you could physically feel it?
The hardest part of this update is letting you know that Avery is not doing well at all. She did make it through the surgery last week but is having a very rough time. She can not sit up or walk on her own. She is in diapers, needs oxygen, and is not able to swallow any longer. It is amazing, sadly so, how much she has changed in the last 6 weeks. The family here in Michigan is on stand-by. My brother said to give him a couple of days and he will tell us if we need to come down. All of us here are getting ready to go. We will drive because flying is not something we can do with my brain injury. The car ride itself is not something I treasure with the vibration of the brain (bet you never noticed it before) and the pain that results. I will just take the heavy duty medications and deal with whatever happens. If you have even one spare second today, please pray for her. She beat it 4 years ago, with prayers and the good Lords hand, she will beat it again.
When you look at what Avery is going through, it makes dealing with whatever you have seen like nothing at all. I have been going through this for 6 months (yesterday), she has been dealing with it for over 4 years. As you can tell, this is a very hard update to write, my heart is sooooooooo heavy.
As always, thanks for checking in and for all of your prayers. Please pray for our little angel. God Bless, Tina
Hello, You haven't heard from me in a little while again. The headaches are worse with the medication reduction but I am adjusting and coping. With the other medications, the headaches were worse for the first several days once we started backing and then my body adjusted to not having the other meds. This one doesn't just go away. I am on a rather heavy dosage (read - a heck of a lot). We will be dropping back 300 mg a week for the next eight weeks. If it gets intolerable, we will hold at that dosage for a short while, going back to the reduction as soon as possible.
With the end goal being that I am off all meds in 8 weeks, it is expected that I will have a full recovery and be able to return to work around this same time. As we back down on the meds, we will be able to better see what, if any, problems still exist. Of course, this also takes into consideration that I will have 8 more weeks to continue healing as well. With all that being said, I have started my job search to re-enter the workforce. My old boss from my position before this last one has asked me to send him a resume but I believe is now in a hiring freeze. I have gotten such great support from my most recent employer. I have had several people offer to be references for me. It has really touched me how the leaders I have worked with in the past are so willing to help support me in finding my next opportunity. Just knowing that I have such support makes the job hunting process so much easier. One person I used to work with would banter back and forth with me and argue about lots of things (if not everything). When talking with him, he said that without me at work there is a dimension that is missing - sometimes you don't know what you had until it is gone. I was very touched. Several people have told me what a difference I made in their lives - at the end of everything, that is what is most important.
Great news on the Avery front! She had her surgery on Tuesday. They were able to do the much less invasive procedure after all. She is doing better already and has even been released from the hospital. It will take a little while for her body to absorb all of the fluid retention and for us to see how much of her current situation was related to the fluid. Any way you slice it, she is out of surgery, says her head doesn't hurt anymore, and is doing better. Hopefully, this was the total fix she needed.
What else is going on? I am doing so much better every day with memory. I retook a memory evaluation that I had taken 8 weeks ago. At that time I scored 2/12 (I passed two sections). This time I passed 10/12! I am left with just a few problems (diverated attention, multi-taksing (including driving) and application of information) that we are still working through in OT. I am still having a hard time using opposite sides of my brain at the same time but am way better at it than I was just a few weeks ago. I am getting back to being me so much that when I come accross something I can't do or remember, it seems odds. Talk about turning the tables, it used to surprise me when I got things right or could do them. The best news in this is that I know when I don't remember or can't do which means that my brain is working on new ways to deal with it. I am still doing all of my exercises and reading activities to work my brain and help to find new ways to process information. I talked with someone that had a similar type of situation back 20 years ago (no, she wasn't hit in the head with a tree, she was in a car accident but similiar result). At the time, the neurologists didn't think that you would find other pathways and retrain your brain. She was simply told "you may get better overtime as you heal but we don't know. Whatever is left, you will just have to learn to live with". Counting my blessings, if I had to get hit in the head by a tree, I am very glad that it happened to me at 40 and not 20. I have been able to reep the benefits of 20 more years of medical knowledge and the belief that you can find new pathways.
As always, thanks for your prayers, well wishes and support. God Bless, Tina
Hello,
Thanks for checking in today. We saw my neurolgist today. It went very well. We are going to start backing down the final medication. He is optimistic that I will have a full recovery. As I start coming off of the medicines we will have a much better idea how far I have yet to heal. We start backing down tomorrow.
Avery is going to have surgery on Tuesday. They are not sure if they are going to do a scope or a shunt until they get inside and are able to see everything. Either way, please continue to pray for her too.
Thank you for all of your prayers. As we back down the medicines, my hope and prayer is that the pain be tolerable and my memory improves even more swiftly.
As always, thanks for checking in. I can't believe how many people are still checking in daily and praying for me almost six months later. God Bless You all, Tina
Hi there,
Yesterday was one of the best days I have had yet. Saturday afternoon, I could remember squat. It just goes to show you that things change so much day to day. Okay, for the funny one. Ken, my husband, and I were talking yesterday about things that happened in the news. He stopped the conversation and told me, oh by the way Charlton Heston died. I, according to him, gave him a blank stare. I was thinking, crud another funeral. I don't remember him being part of my family or friends, it must be from Ken's side. I have since learned that neither of us are related to him. I have also seen pictures on TV of him and have no idea who he was. Just another blank spot in my memory. Thank goodness it is not one that is a real deal breaker. It did give us a laugh once I told everyone what I was thinking.
I am realllllllly tired of not being able to be me. According to those around me, I have been down lately. I have been unable to do so much for so long that I am just over it. I decided yesterday that I was tired of being caged and I was going to do something about it. I was going for a bike ride. WELL, I had never thought about all the things you use your brain for when bike riding -scanning, balance, peddling, steering, just to name a few. (and yes, I had on my helmet). I live further back from the road than most people so I had a good long chance to test it out on my driveway. Well, I got on and started down the driveway. I tried to change the settings and immediately drove off the drive onto the grass. Next, I was riding along doing okay with balance but had difted into the middle of the road. Faced with cars, I moved back to the side of the road but had a bit of problem with balance. Here is what it boiled down to, I can balance well or control where I am going well, but not both. Oh, I forget to mention the lovely curb that jumped out in front of me. It had to have just been put there, it appeared so quickly. Did I mention that scanning everything around me was way over-the-top for me? The moral of the story is I am still stuck captive at home for now and just have to deal with it. I just have to focus on my blessings
Thank you a million times over for the prayers you have shared. I am about 70% back to being me and still improving. It would not be possible without all of the love, prayers, and support you all have given and of course with God's will. This week we see my neurologist once again. Next week, it the med rehab doctor. I will, of course, keep you updated as that all happens.
I need to ask you to do me one more favor. I need you to pray for Avery. She is barely able to walk on her own now. Some of the doctors think it is fluid build up in her brain, others have thought it was steroid related. If it is fluid, the best course of action would be a shunt. The doctors are conferencing with other doctors to discuss the case. This Friday the family will meet with her primary treatment doctor and discuss the next course of action. If they do decide to do a shunt, it would be done shortly thereafter, perhaps early next week. Please pray for the doctors wisdom to find the right cause and solution for her change in health. Please also pray for strength for Avery and her family as they go through this. Blessings, Tina
Happy April Fool's Day,
I hope no one got you today! This morning my sister called to tell me that Eric didn't have school. I didn't even realize that it was April Fool's Day or I would have thought she was trying to get me. His school is really out because of power outages. Several schools in that area are closed today. He is home helping me with my writing exercises. He has an amazing gift for writing and is such a wonderful asset to me.
I have a headache today but not like the past couple of days. More than anything I am tired now. The days following a bad headache, I usually am more tired than normal. Hopefully, I will be able to get to bed early tonight and get a good night sleep.
I would love to hear how your April Fool's Day went. I usually play at least one elaborate trick on someone. I took this year off (which means that next year will be twice as good). Talk with you soon. Thanks for checking in and for all of your prayers. Please continue to pray for Avery also.
God Bless You, Tina
Hi all,
It has been a couple of days since I updated. Sunday was one of the worst days I have had in months. The headaches left me in tears and I had to resort to the strongest of medicines. I was able to go to sleep for a few hours and help pass the time until the headache was gone. It was the first week in three that I missed church but next week I will be back on track.
I have a bit of a headache today. (in Tina positive speak that means that it really hurts and I am just coping and staying positive). As I have said many times, I don't mind the pain, I can handle it even when it is super uncomfortable. What bothers me is the resulting confusion and loss of memory. As the plaque my loving Aunt Dorothy sent me says, "Of all the things I lost, I miss my mind the most". Now you also see the twisted humor in my family. With time, I should not have these episodes so much. My son was talking about something that happended on Friday night and I don't recall it. With this much of a headache, I am lucky to remember this morning ;)
Enough about the yucky stuff. Let's talk about something funny. A little while ago, I was talking with my best friend and we were walking down memory lane. I was on the phone so the kids could only hear part of the conversation. I was laughing so hard I was crying and at some points, I could not speak without gasping I was laughing so hard. Much of what we were talking about, I only had vague memories, a few parts I remembered well. When I got off the phone, Eric asked me who what movie we were talking about on the phone. He wanted to see that movie it sound funny. Finally, I composed myself and with all seriousness said, honey, we were talking about us. Eric said no really who were those cool people. It couldn't be you, you are my mom. This injury has showed me so much how so many people see me. Many have left me speechless and move loved than words can express. Others have left me, well, not that. I loved Eric's response, I laughed at it, and I was thankful that he only sees me as the responsible, fun loving mother - for now, we will keep it that way.
Again, thanks for checking in and for all of your prayer. I couldn't be where I am today without your prayers. Please keep them coming. I am going to heal and I am going to be me again, thanks to you. God Bless, Tina
Hi there,
It has been a week again since I updated the blog. We had a really full day on Easter. I did get very tired but held up okay. It all caught up to me on Monday. I needed one of the medications that I stopped taking. I went to bed with a splitting headache but the medication took care of it and I was able to finally get to sleep.
One of my OT activies was to update my resume as a recall activity. It was a lot of fun to try to remember what all I did for the different places I worked over the past 20 years. I did have to break down and ask some of my old bosses to help me with the accomplishments as my lists were short and I knew (or at least hoped) that I had done more than that. The list was longer than I had recalled by quite a bit. Even after seeing some of the lists, I didn't recall doing some of the things. This was a great recall activity.
My OT is on vacation this coming week so I am doing therapy at home. One of my therapies this week is playing cards, specifically Speed. It is a scanning, speed, and divided attention activity. So it works several aspects at once. The kids and I spent the night at my mom and dads last night and played at least 50 games of speed. We are all addicted to it now. I have to continue to practice this. By the time two weeks are over, I will have it down pat and be a master.
Avery got her MRI results and they are good. The tumor has not grown. However, they are concerned about the fluid retention in her brain. The group of doctors are conferring about what should be done about it and when. We will know more once they can all decide how best to handle this. As always, thanks for checking and for your prayers. God Bless, Tina
Hello,
It has been 5 months since my injury. This season has helped me greatly to continue to have faith and stay focused. You see I keep remembering that even though Good Friday happened, Sunday did come. I have been disabled for 5 months, lost my job, missed so many things with my family and friends, but my Sunday will come. Even when the darkest days (Friday) are here, we are reminded that Sunday is coming.
We have backed down the medicine and I am feeling the headaches more. It is not intolerable and I can handle it. The real downside to it is the impact it has on my memory. I am much fuzzier than I have been.
This Easter we are going to church, over to my parents for a few hours, and then to my husband's family for a bit. It is a really long day for me but I can lay down and leave whenever I need. I am ususally only good for a few hours at a time so I expect I will nap during the day. This is the first Easter we have been home in 9 years so we are going to try to see our family while we have the chance.
Please continue to pray for Avery. As always, thanks for checking in and for all of your prayers. I want to wish you and your family a wonderful Easter Sunday full of love, joy, and rejoicing (and Easter Bunny Candy). God Bless You, Tina
Hi all,
Christmas came and went without me being able to do hardly anything. I am so thankful that this holiday, I am able to do so much more. Christmas I literally sat, ate, and went home or to sleep from the two celebrations we attended. How far I have come in three months! I am going to boil eggs since I have learned to use the stove again. We are going to color eggs for Easter and make deviled eggs. It may not sound like a lot but for me it is a great accomplishment to be able to do these things.
This week has been a bit of a tough one. We backed all the way off of the second medication I have been taking. I feel the headache more but it is not anywhere near intolerable. The only problem is that things I remembered and talked about just a few days ago, I now don't remember. It appears that the headache is impacting my memory. I joked with Ken and the kids that if they had anything built up inside that they wanted to say to me that now was the time because I probably won't remember it tomorrow. Ken said he wasn't willing to take that chance just in case I did remember. (for those of you that don't know him, he was joking).
OT is going well. I am doing so many taxing activities there and at home. The reading piece from speech is also going well. I can now read two articles and comprehend before I need to stop. When I need to stop it is for shorter and shorter periods of time. My brain is healing and I am getting better. I also play a lot of Big Brain Academy which I told you about already. It is really helping me. Multi-tasking, depth perception, and driving are the stumbling blocks for me now. I have reduced periphrial vision. It is still better than most peoples but less than I am used to before. The kids were also used to it being better so they walk up to my side where there are use to speaking to me and scare the *(^% out of me because I can't see them there now. If that is all that I end up losing with this, I will be super happy. As I said, it is still good just not me.
I thank you from the bottom of my heart for your love and support through all of this. It is at times of trials that we find out who our friends are. I am so blessed to have so many, including you. Thank you for your prayers. Please continue to pray for Avery. I wish you a wonderful Easter and all the blessings that comes with His resurrection. God Bless, Tina
Happy Holy Week,
Can you believe that Good Friday and Easter Sunday are just days away? We had a very busy couple of days. I did go to the Coffee House. It was nice. I sat at a table with two other friends and we talked for a while. The service was very nice also. It didn't even last two hours. We drank hot cocoa, talked, and got refocused on this coming Sunday and the message it brings to each of us.
Saturday was very busy also. After the Coffe House, I came home and slept until late on Saturday. We had a funeral service for a long time friend of my husband's family. Between the viewing, the service, and the luncheon, it was probably 3 hours. I was wiped out. I wore a very small healed dress shoe. This is the first time I have been in any shoe that wasn't flat. I was VERY proud of myself. I won't go into the whole story about not fitting into my pantyhose anymore. Let's just say it was quite the ordeal and very funny but not a story I would like told at my funeral :)
After the funeral I came home and went back to bed, I was toast. Sunday morning came and I went to church. It was my second week in a row. Last Sunday, it was too much for me and I had altered speech. This Sunday, I made it okay. After church we went to my parents house where I promptly sat down on the couch and fell asleep for three hours. It was a wonderful visit. They got to be entertained by my snoring :) It was still really nice to be able to get out and see them. Today I have walked my short stint for exercise and gone to OT. I am working on writing my resume, practicing multi-tasking, and starting to relearn how to drive. It is all so much fun but really challanging. So, guess what, I am going to get off of here and go take a nap again. It is all about progress not perfection!
Thank you for checking in and for your prayers. I am continually touched by the wonderful emails and prayers set my way. Please keep Avery in your prayers too. If you haven't checked her site before it is www.averyann.net God Bless you, Tina
Good Morning Sunshine!
I have been playing a ton of Big Brain Academy. If you don't know what that is, it is a video game that tests memory, thinking, and cognitive abilities. The thinking section is still the one I am worse at but I am getting better. I also am getting better with the memory section. I am loving the fact that I am getting better everytime. I am still only a C (a to d ratings) but I have moved up from the bottom. :)
I am also spending a ton of time each day on right side stregthening and fine motor skills training. I use golf balls, pennies, cards, beans, and poker chips. I like the poker chip the most because it is the most challanging for me. You simply take a poker chip and put it between your fingers and move it between the next two fingers without using your thumbs to help. My kids can do it fine - me not so much but again, each time I am getting better.
Today I am going to spend some time with my daughter who has a half day. Later today she will babysit for some friends of ours while the moms all go to a Coffee House night at our church. This is my first girl's outing. It is only two hours so I am going to give it a try. I am super excited. It is another step on the road back to being me.
Let me know how you do with the poker chip exercise. How did you do with the marching? As always, thank you for your prayers and for your well wishes. They are helping me to heal faster and faster. I can't wait until we can all celebrate me being me again... God Bless You, Tina
Hello,
Today was a great day at OT. They told me that it will be one to two more months before I can multi-task and drive :) YEAY! I have a ton of fine motor skills tests that I need to work on over the next week. I also have a new opposite side of brain task to master this week. Want to practice with me. It may be easy for you but it still something that takes practice for me.
Here we go. Start by doing marching in place and moving your same arm and leg at the same time. Once you have mastered that, try moving your opposite arm and leg - make sure to march with your knees high. Fun! Fun! Fun! It is the simple little things like this that will help my brain to work properly. I also am working on Big Brain Academy. It works on memory and other cognitive skills.
I am so very much looking forward to the next few months to see what all continues to come back and how much better I am going to be. I can't wait to be back to normal again. It has been 4 and a half months so far so it will be 5 or 6 in total. I could not have gotten to this point so fast without all of the help and prayers from all of you. I will never be able to thank you enough for your support.
God Bless, Tina
Hi all,
I have had some really rough days since my last entry, three to be exact. For the most part, I just kept going back to sleep to get through it. Thank goodness I can now sleep through it. Those days were just slept away. We are not sure if the bad days were a result of backing down the medicine or not. I went to church again this past Sunday. There were so many things going on at once that my brain couldn't handle it and I slept for 3 hours after the service. Either way, today (so far) seems to be a better day. for the most part, I am up to a point that I can do between two-three hours before I need to lay down again (depending on how taxing those hours are). I am very much looking forward to the day that it is 8-10 hours.
I just heard about the title of a new book called Stop Whinning and Start Living. I love that title. I don't know anything about the book but the title really speaks to me. I stopped whinning a while ago, I am ready to start the living again piece but my body (and brain) don't quite agree with me yet. Yesterday at OT, I had to do this exercise that had me scan a board with my eyes to find matching pairs. Yes, the game you played either with your kids or as a kid. It made my head hurt and I had to go lay down during OT. It won't be long until that isn't a concern. Such a simple game and I have to lay down after playing it. I am only 6 weeks away from it being 6 months. The doctors have all said from 6 months to one-year to heal. I am choosing 6 months and hope my body and brain agree :)
Avery is home and is doing better. Thank you for all of your prayers for her. I too owe you all a huge debt of gratitude for the prayers that have helped me get to the point that I am today.
God Bless you, Tina
Hi all,
Today is a BIG snow day by us. We got 10 inches of snow overnight. It really made me stop and pause today. Today was a prime example of the simple little things in life that you can't do when you are injured that the rest of us take for granted. I can't even shovel my own snow. What do you do if you are injured and live alone? It makes me super thankful for the wonderful support group I have had during this time.
This morning, I just want to do so much more than I am able to do. Thank Goodness Ken is here to keep me in check and not doing more than I should. I think I am able to do so much more than I really am and end up with a bad headache laying on the couch again. As my body heals, I am wanting to just be me again but I am not. Hey, how did you do with the toe tapping thing? I still haven't gotten it yet but am determined I will. I did get the same foot same hand.
We backed down the second medicine to once a day. So far, so good. I can't do as much as I could before but that is to be expected. The headache gets worse with less activity than before but I am adjusting. On another note, Avery is still in the hospital and they are still stumped as to what is causing her problems. All of our prayers and hearts are going with my brother and his family for Avery's full healing.
Please continue to pray for Avery and her healing. As always, thanks for your prayers and thoughts and for all of your time spent checking in on me. Blessings, Tina
Hi everyone,
Today has brought a day of phone calls and practice, practice, practice. I still can't get the toe tapping thing down but am going to master it yet. I talked with my neuro today. We were supposed to meet next Wed but he wanted to call me with the full results of the EEG. Everything is checking out without seizures, like I told you the other day. They are stumped as to why I am having the episodes but are 100% certain that they will heal in time as my brain heals.
What does this mean? It means it is time to start backing down on the meds and see how I do. I am going to be off of two of the medicines by the next time I see him. He moved my appoitment out until six weeks from now. We think I will be ready to start stepping down off of the last medicine at that time. Today I started the back down on the second medicine, the first one we had already started the reduction. Hmmm, well I am not able to think as well as I have been with the medicines but that is to be expected as the headache is worse.
I am still having voice changes as I do anything physical. The mental triggers are taking much more and I have figured out how far I can push it before I need to lay down. Once I lay down, it is taking less time to get it back under control.
Avery is still in the hospital and they are still trying to figure out what is happening with her. Please continue to pray for her. As always, thanks for your prayers and for checking in with me. Blessings, Tina
Good Morning All,
What a wonderful weekend! My brother was in town, I was able to go out to dinner with my whole family on Saturday and to church on Sunday. I spent the rest of the time resting or sleeping but I was able to do the really important stuff. I was truly blessed. This is the most I have been able to do in months! I am getting better.
Today at OT, they had me do some exercises that were really simple but that my brain could not do. Here you go, put you hand on your knee. Slap (lightly) your knee with your hand and tap your foot at the same time. Do this with your same hand and foot. Now comes that hard part, tap your opposite foot while slapping the opposite knee. I am still trying to get this one but will with practice. It is a child's exercise but I am retraining my brain like a child.
If you haven't read Avery's site in a while, she is back in the hospital. She is holding her breath and passing out and they need CPR to bring her back. The doctors don't know what is causing her to get to this level so they are trying to figure it out, perhaps the steroids but they really don't know anything now. My brother was in MI with us when the first episode happened and on his way home when the next two happened. He is there with her right now. Please pray for her.
As always, thanks for the prayers and well wishes. God Bless You, Tina
Hello,
I have done it again, it is too long between updates. I have finished my EEG and OT appointments for this week .The EEG was supposed to be a 6 hour but we ended it early. I had two "episodes" that were not seizures, thank God. With two episodes they thought they had enough and ended it after four hours. It is not seizure, it is not explainable, it is just baffling. It is resolving itself. It is happening less and less often but is still happening quite easily from physical activity. The mental activity is taking more and more to set it off. We will get the full result of the EEG in two weeks. For now, all we know is that it is not seizures.
I belive that it will resolve itself before we ever figure out what "it" was. It has been ruled out that it is seizure or phychological and the neurology of it doesn't make sense. So what is it? Who knows. I do know that my headache correlates with it but it is not ususal for migranes to effect speech. The doctors are trying but have really run out of options to explain it. The brain is a mysterious things. I know one thing for sure is that I will be realllllllly happy when I am back to being myself.
I am getting better and will continue to do so. I know that there are so many people so much worse off than I am. I take comfort with where I am and that I have the ability to heal. The nice thing about what I have is that as it takes the doctors longer to figure it out, I get better, time is on my side. I have gained a TON of weight and am finally able to start with limited strength building exercises. I will have plenty of time to get back into shape after I heal. Today I would say that I am 50-55% back to being myself.
Thank you for checking in and for your prayers. The prayers I have recevied so far have taken me tremendous strides, God Bless You for sending those my way. Blessings, Tina
Hi,
It is Sunday and I missed church again. I so miss being able to attend regularly. Our church is such a fun place to worship and so full of love that when you can't attend, you realllllllllly miss it. Today I missed it because the headache is overwhelming and my voice has changed again.
Today I am also super confused and having a hard time following conversations. It is like I am back like I was a month ago. During the night on Wednesday I felt a strong snapping inside my head that woke me up. We aren't quite sure what it was but since then I have had a much worse headache. Perhaps it is the neurons waking up again. Wouldn't that be great.
I just got the great news that my brother is coming home next weekend. Avery is doing well enough with her treatment that he is going to lay-over in Michigan for the weekend after a business trip. I can't wait to see him. Next weekend is also friend day at our church. I am going even if I have to go on a stretcher with ear plugs. I would also welcome any of you that would like to join me to come along. Just shoot me an email if you are interested in going with me. It is a very casual church that anyone can attend (and feel at home). Just let me know.
My mom is doing better today. She is still really weak but at least is able to take fluids. As always, thanks for checking in and all your prayers. God Bless You, Tina
Hello,
Can you believe it? I know I can't! It has been 4 months since my accident. In the last few weeks, I have been getting much better. I am steadily improving but still having great difficulty with my short-term memory and the headaches. The past two weeks have been just crazy in our house with sickness. First came the stomach flu and then this bronchitis stuff. Steph is the last one fighting it off and hopefully we will be all done with it. With the coughing, your head shakes (bet you never throught about that) and wow do I know it is there!
For three of the past four months, I laid on the couch and just existed and was thankful to be alive. Now, I am still thankful to be alive but very ready to be back to normal. That is supposed to be a good sign that I am getting better. I have a very busy week this coming week. OT twice, a 6-hour EEG, and an awards breakfast for my daughter's honor roll. Any one of these things is enough to set me back but I am not going to miss any of them, especially the awards pancakes.
My mom has gotten this horrible mess going around and it is really kicking her butt. She is getting dehydrated. We are all just ready for all of the sickness to be over. In the meanwhile, please keep her in your thoughts and prayers. As always, thanks for checking in and for your thoughts and prayers. PS I still can't find the duster.
God Bless You, Tina
Hi all,
Here is the question of the day - where the heck did I put my extended handle swifter duster? If you happen to have seen it at my house, please let me know. I know for sure that I got it out one day to sweep up the endless dog hair. I also know I put it away somewhere but I have NO idea where. This happens to me about hmmmm a million times a day. At least this morning I did close the refridgerator after I opened it. That one is super funny to me. You would think that the cold air blowing at me would be a clue but I still miss it all of the time.
So many people talk about what happens to you where you are hurt or going through a rough patch. For me, I have learned to be much more thankful and forgiving. (Doesn't this sound a bit like the song sung by the guy that I can't remember his name or the title of the song - but it is about living fully, well anyway). What I have learned has been a very pleasant experience. So many of you have shown me so much love that I can look back and say that I must have lived right in the past. The memories are coming back from the long term. They are so much fun. The kids, my family, or my best friend Mary will be telling me a story about something way out there that I did and it will start to come back to me. It is so funny to hear it through their eyes as I start to remember . For those of you reading this that don't know me so well, I like (okay love) to have fun with my family and friends, I was the one that flipped her canoe at 5th grade camp with the girls (truth be known, I was the biggest kid there) and I am a bit loud. Well some memories came back to me about the old days back in my mid to late 20's and I was sharing them with Ken. The kids were there and Steph heard what I was talking about. She started laughing. I asked her if she was having a hard time picturing me with a wild side and she told me in no uncertain terms that I was not wild at all, I was a mom. Sometimes some stones are better left unturned.
As for what is going on with the family we had a brief scare this week with my brother's family. He left Michigan several years ago and moved to Prattville, Alabama. They don't have snow and they have a Robert Trent Jones golf course in his back yard. Well a tornado touched down in their neighborhood, just a few streets over from where they live. Their house and my parents house down there are both fine. They were without electricity for a while and had to go to a hotel so that Avery could keep her oxygen going, the battery only lasts so long.
As always, thanks for checking in and for all of your prayers. I am still dizzy but can walk on my own now. I am having the change in speech pattern less and less, we are down to every other day or so and for shorter periods of time. I have learned what it feels like when it is going to change and I stop and rest for a while. My memory is still not good. The funny thing is my brain - shoot I forgot what I was going to say - you will have to wait to see what is go funny. For now, thank you for the prayers and well wishes. I hope you all know that I could not be on the road (super highway) to healing if it weren't for all of the support I have gotten from you. God Bless You all, Tina
Hello,
Where has a week gone? Well most of it was spent with the stomach flu and croup in the house. Eric is off on break this week but all he has been able to do is play a game of cards with me. That was the exercise I choose to stimulate my brain. Okay, truth be known he had a huge advantage. We were playing blackjack, it strained my brain until the voice change happened and the headache made me go lay down. He also took advantage of the fact that I can't add without my fingers so he cleaned up big time. Steph was not off of school this week but did miss several days with the stomach flu too. Isn't it just amazing how things just go through the whole house. So far I have escaped unharmed - let's hope it stays that way.
The hit counter on the site doesn't work so I don't know for sure how many people are checking in but I do know that I have heard from a large group just touching base regularly from the site. I am really thankful to have this vehicle to share updates and to hear from all of you. I am getting better daily. I still have quite a way to go before I am back to being me again. Yesterday was a huge moment for me. I cooked my own breakfast without burning my hand. Okay, so it was an over-easy egg, but I did it on my own. Two months ago, I could not go to the bathroom without someone helping me. I am getting better, just don't ask me to remember anything with my short-term memory.
Two-weeks ago, Ken and I were talking about a place that we have camped in Canada called the Pinery. I didn't recall it at all. Yesterday we were talking about it and I could recall somethings about it. The long-term memories that are missing are coming back. It will just take time. According to my neuro, it is just because of the microscopic swelling of the brain and as the swelling goes down, the memories will come back. The short-term memory doesn't work quite the same. OT is going to help me with tips and tricks to help my short-term memory. Maybe I won't forget to close the fridge door anymore. My parents and I have it figured out, I am just practicing for my later years when I really can't remember anything and it isn't because a tree hit me, who knew! Now that the kids are getting back on their feet and I am doing better, I will try to keep the site more updated. Honestly, I don't remember to do it unless someone tells me to. Guess I should put a sticky note on the computer, but then I would need another sticky note to tell me to go read the note on the computer - what a life I have - isn't it wonderful - I am thankful for it, even if it is a bit upside-down right now.
Thank you to all of the amazing people that have given donations to me and my family. The money is being used to help us cover the additional costs of testing and to pay the premium for our benefits while I am off work. My friends at work and at chruch have been very generous so much so that I have been left speechless (which isn't something that is easy to do). Other friends, family, and even some strangers have lent a helping hand. God Bless You each and everyone. Thank you for your continued prayers as I continue down the road to "being me" again. And yes, I know I am going to break some of your hearts but I will be me again - with even more energy than before. God Bless You, Tina
HI,
I talked with my neurologist yesterday. He has requested that I do a 6 hour EEG and meet with the eplipsy specialist. The two of them talked and are questioning if my speech pattern is from a former seizure and the healing process after that. We will be doing it at the end of the month unless there is a cancellation before that. I have also started OT and speech evaluations.
I had a great day yesterday. A great friend from the church came over for lunch and a friend stopped by later in the day from work. Of course, that means that I rested the rest of the day. The headache got bad enough to cause my voice to change late in the day during the second visit. So far today, it has started hurting but has not changed yet. It is just plain odd how this happens.
With being down and out so many things can not be done. However, I have to say that I have such a new apprecaition of life. This morning I woke up and looked out my back window to see all of the trees with ice and snow on them. Before I would have looked out and moved on. Today I stopped and relished it - what a gift everyday is! It is really amazing how much different the world looks when you change your view! Hopefully, you too will stop and see life through a new view (without having to go through all of this)... As always thanks for your prayers. Please keep praying for Avery's healing as well.
God Bless, Tina
Hi,
Did you ever get up with the feeling it was going to be a bad day? It really stinks when you think like that. I decided to fight it. I was going to change my mindset, I went back to sleep. What do you know, I did wake up different, this time it was worse, I was certain it already was a bad day I guess my brilliant plan didn't work so well. It is really hard to have a positive attitude with a headache like that - but I do. I decided that I was going to go back to sleep for a third time. What is that old saying about three. I don't remember (go figure) Well, whatever the saying, it worked for me! See you should never quit trying even if it means that you need to take three naps.
We haven't heard back from the speech and OT yet on the schedule. I do have a doctors appointment on Thursday to say how the therapy is working. I may not have even had my first appointment with OT by then. All of this therapy is to help make my brain work like before - (be nice now!). They want me to journal so that my thoughts can find other paths through my brain that aren't damaged. The funny thing is that many times I will be talking or writing and say something but I have no idea what I said. Today Ken asked me what I had planned for the day. I told him I was going to Nieman's, then meeting the ladies at the club for lunch, stopping by the spa for a mud bath, then a short stroll down the Saur. I then said what's a Saur? I am strolling down something I don't know. The word is in my brain but not the meaning. This happens to me all of the time. If you are talking with me and I ask you what I just said, I was listening, I just don't know the meaning of what I said. It is crazy.
I had a blast on my birthday getting to talk with people about memories. I love hearing stories about me. So many of them, I haven't recalled. It is really amazing to get to hear about yourself through the eyes of others. It really gives you a very clear picture of how you showed up to them. So far, I have been embarrassed, flattered, and most everything in between. I would love to hear any special story you may have about something I did, please feel free to drop me a line. Avery was doing better yesterday but does start her new chemo tomorrow. Please keep her and the whole family in your prayers. It is at the times of the greatest tests that we show are greatest strenghts and that is what her parents have done.
As always, thank you for your prayers and support. I love hearing from you. Feel free to drop me a line. If I can't read it, my husband will. Enjoy this day as the gift it is that you have been given, God Bless You, Tina
Hi all,
I haven't been able to journal for a few days. It is very taxing on me. Once I finish, my head ache is so bad taht I need to go take a nap for a while - but I am doing it. Yesterday was my birthday! I spent most of the day laying around the house. I did get to get out for a huge change. I saw my best friend for a little while and my parents. What a treat. We laughed so much. I love how much I laugh now. My aunt sent me the most beautiful bracelet. When you look at it, it looks like hearts of silver and gold. When you look closely the letters God are what is making the heart shape - it is amazing.
Want to hear something funny. I was having a Tina moment. You see I am certain we are going to win the lottery so I begged Ken to go buy me a ticket, I only need 1 to win. Well time passed and he didn't go. He was helping tuck me into bed and I asked about the ticket. He hadn't gone while the kids were home. He promised to go as soon as he got me all set for the night. And that was exactaly what he did. You see he was going to get a ticket before the drawing so he had to hurry. What a great guy, he got the ticket before the drawing. Actually, quite a long time before the drawing because this was Wednesday night and I thought it was Tuesday. Tuesday is the drawing night. We all had a big laugh about it, even Ken. I just can't remember anything.
As for how I am doing (notice I do the fun stuff first), the new meds make me sleep a ton more and make me loopy. The letters on this screen are just blurry and moving around. Is it the meds or my head, who knows. I am starting OT this week. Channel 2 news wants to do a story about me on the health section and U of M is going to use me as a case study for visiting doctors. I am glad that I will be able to help others. Who would have thought that running a marathon would make me speak with a chinese dialect (if that is the right word)? All of this is so funny to me that I have decided to write a book, no one may ever read it but at least if I write it down, I will have a way to remember it ;)
On the very serious side, Avery has started having some problems. She is having difficulty walking and using her body. They are working hard to figure out what is going on with her but there are serious concerns about what it could be. Please keep her, my baby brother, and my parents in your prayers. As always, thanks for your thought, prayers, and good wishes. You really don't realize how many amazing people are in your life until you are down and out (or knocked out). Real friends are those that are there for you in times of need, so many have shown they are true friends that it has left me humbled. God Bless You, Tina
Hi,
This is Tina. Ken is going to edit for me. They want me to try to journal some to help my brain start working better. I haven't been able to do much the last couple of days. I worked on a puzzle with my mom and lost my voice completely. I was unable to talk at all for a while. Just too much stimulation of the brain and that was that.
They found something on the EEG that they want to look into further. It appears that the left side of the brain is working slower than the right. We should know more about all of this later today or tomorrow. Finally, they changed my medicines and I start taking the new ones tonight.
For those of you wondering, I have already been kicked free from the psych after one visit. They found that I am in good spirits about the whole thing, not anxious or stressed. After all it is in God's hands so we really should just sit back and enjoy the humor in this - so much of it is just plain funny. The kids are always cracking me up acting like me and making comments that sound like me, we laugh all of the time around here. We might as well enjoy the ride God has put us all on :)
My head is spinning and the words are all blurry so I must go. God Bless those of you who have made donations and those of you praying for me and my family. Until next time, Tina PS Fox 2 News called and wants to do my story on the heath section. Perhaps I can help someone else miss getting hit by a tree - I should start with look up and run faster than I did - you have to admit it sounds funny just to hear it - it's okay, go ahead laugh, I do.
Hi all,
Today brought the next appointment and few answers. Tina's test score were very low in certain areas (unusualy low), so low that they can't determine anything conclusively. They are going to move forward with all of the treatments available: occupational therapy, speech therapy, migrain treatment with medications, and psychological therapy to deal with the stress of the injury. All of those things combined should help us get through it easier but it all boils down to time. Plain and simple time.
We will be talking with her neurologist about her medicines in the next couple of days. He said that we may change the program up a bit depending if she is still taking one of the medicines which she still needs. We keep changing until we get the right mixture. Thus far the meds have been the only thing that has brought any real help to the situation.
For those of you that know Tina really well, you know that she is super determined to get better. They suggested that she do some things on her own like trying to read. She has chosen to read and try to reply to email on her own starting tomorrow. If you want to talk directly to Tina, she is going to give responding to email a shot, talking still exhausts her. She is also going to try to do these updates. Her determination is high to get back to where she can function like Tina again even if she has to sleep half of the day to do so. As always, thanks for your prayers and support during this really crazy period in our lives.
Regards, Ken
Hi everyone,
Today has once again brought ups and downs with Tina. She cycled in and out of speech patterns at least three times today. That is very draining on her. We are still looking at Thursday as being a critical piece of the puzzle. We just hope we aren't disappointed.
As you can see, the new website has been launched. The email well wishes are coming in and we have received a few donations as well.
If you happen to know anyone interested in 4+ acres of land, we are trying to sell a parcel. Please feel free to pass along our information. Until next time, please continue to pray for Tina and her baby neice Avery.
God Bless, The Brandau's
Hi all,
Tina has had a good day so far. She ended up going almost 24 hours without her voice changing. Since then it has changed twice. She has started taking the highest dosage of the medicine and they have gotten the headache to a tolerable state. As I said, thank goodness she has a high pain tolerance.
Steph has some friends over for her birthday. Tina entertained them all with her "alternate voice". Her speech pattern goes into that of someone just learning english - the girls were cracking up - not at her but with her. Tina had a good time but had to go to bed to get away from the noise. She has a very low tolerance for noise these days.
For those that read the jounal often, you will remember that Avery was hospitalized while in Orlando with pneumonia. They have made it back to their house, she is doing much better, and she even got to go outside and build her first snowman (yes, in Alabama).
As always, thanks for your prayers and for checking in on Tina. Keep praying that we get answers as to what to do next on Thursday. God Bless, The Brandau's
Hi everyone,
So much has happened this week! We didn't post most of this week as the new website was being built. The beginning of the week was still quite rough for Tina. Those tests really got the best of her, especially the math and reading portions. It is just really crazy. She can use words correctly but has to stop and ask the meaning. It is really pretty cute. She will say something then lean over and ask me, "did I say something offensive or inappropriate".
Thursday we spent the day in testing again. She had her follow-up EEG. During this week, they called from the neuro testing facitility and asked her to come back for one more 1-2 hour test. While out there Thursday, she did that test also. She was wiped out once again (she now refers to our couch as her bed).
Just a few more days and we will have ALL of the results. Next Thursday we will be able to map out the plan for phases II. Phase I was getting the medicines rights to make the headaches tolerable so that we could do phase II. For the past week, she has not had any headaches that made her lay down and cry. The headache is still there it is just being masked by the neuron blockers - much like narcotics do for aches in the body. Thankfully, she has a high pain tolerance. As always thanks for your prayer and unbelievable support.
Ken
Monday, January 14, 2008
Hi everyone,
Today brought another doctor's appointment and another day of great news. Tina is progressing - it may seem slow to all of us but it is normal for what she has. This Thursday we are doing another EEG and then next Thursday we get the results of all of the tests!
Most of us know Tina is unique but now so does the University of Michigan. They asked us today if they could use Tina's story as a case study for visiting doctors coming in May. She gladly agreed. If she can help one person have an easier time of it than we have had, she jumped at the opportunity.
For now, thank you all for the prayers and well wishes. Most of you know that Avery is back in the hospital with what we think is pneumonia. Please continue to pray for her as well. What a way for her to end the marathon weekend :(
As always, thanks and God Bless, Ken
Hi everyone,
Tina had the second part of the testing today. It was another four and half hours of questioning, reading, math, language and other tests. Needless to say, it kicked her butt good. We will get the results of these tests in just about two weeks. We spoke with the speech and language therapist today also. She is going to give us some additional exercises to do once the full testing results are put together.
Tomorrow is the marathon. She wants to be there so badly. She is there in spirit and is the loudest cheering team you have ever heard. Can't you just hear her yelling - Run! Avery's Army, Run!
Report cards came out today for Eric. He got a 4.0. Tina joked and said oh hell, now I know I am not smarter than a 5th grader. As long as she can keep her sense of humor, she has won the war! Keep the prayers coming. She is going back to see the doctor that is coordniating all of this on Monday. A few more weeks and we will the phase of the plan. The meds seems to be working better as we are increasing them.
As always, thanks for your prayers and for checking in on Tina. Please also pray for Avery's Army safe return from the marathon. God Bless, Ken
Hi everyone,
A short update tonight. Tina had her first testing session of four hours. It really wiped her out and she is already off to bed. Hopefully, Friday will go a bit better. We won't find out the results of the tests for two weeks or so. We will let everyone know more when we know more about the timing.
As all of you that are running the marathon take off for Orlando, please keep Tina in your prayers and know that she would rather be there with all of you than anywhere else right now.
As always, thanks for the prayers and thoughts, God Bless you all,
Ken
Hi all,
Tina has had good days and bad. She was determined that the kids could have a sleep over while off for the holiday. So, she left for a sleep-over herself. She went to her parents for the night, thinking it would be too loud in the house (and she was right). She had a blast with them talking about memories she had forgotten.
She finally gave in and had her hair cut. Her head hurts her so badly that she has just tolerated her hair. She finally got fed up enough not to care about the pain and just did it. She was very thankful the person that cuts her hair is from her church and knew all about what had happened. When she got there she could not speak so it was sort of up to the family to explain what she wanted done. Between Jenni, the kids and myself we got it right. Before we left there, her voice had come back.
We are all excited and anxious waiting for tomorrow. She goes for a battery of tests that are four hours long and does round two on Friday. Tina is nervous about being able to hold out for the tests. Please continue to pray for her and her healing. We are anticipating results from these tests in two weeks. Many thanks to you for checking in on Tina and for your thoughts and prayers.
God Bless, The Brandau Family
Hi everyone
Tuesday was our visit to the headache doctor. He looked at everything and decided to double the dose of one of the medications over the course of a week. This should take the dosage to the level that gives most people the best relief for migraine headaches. The hope is to eventually reduce one of the medicines that gives her the most side effects. We also had some discussion about her speech problems and he said the symtoms do not resemble the ones produced by siezures.
The doctor also ordered some blood tests to rule out any uncommon problems that can be caused chemicaly by the brain. We had the draw done while we were there. He also ordered another short duration EEG in several weeks to check for any signs of siezure activity due to some of the problems she has been having. He also said the additional testing she is having done next week will be very helpful it pinpointing what areas of the brain she is having problems in and what rehab can be done for those areas.
After the doctors visit Tina had enough energy to stop by work being they are both in Ann Arbor. As much as she wanted to see everyone at work she couldn't hold up to see everyone. It was great to see her interacting with her team and getting to talk to people again. Once we got home she had to take the strong medicine for a really bad headache and lay down but it great to see her out a little bit. Getting out does come at a price since the next morning she was unable to speak for four hours. As the day progressed she improved and felt somewhat better.
Thanks to everyone for there thoughts, prayers and support. Ken
Happy New Year! Today is a clean slate starting a new year and promise of better days!
Last night we tried not taking one of the medicines to see if it is causing some of the memory problems. Well, that didn't work. She woke up in tears and very confused. She has taken all of her meds now and is a little bit better. She is determined to go to her parents to watch U of M's bowl game with them. She may sleep through it but she is going (in her U of M pajamas).
Last night Tina said, I am so lucky to be here and to have this New Year. When you look back, I easily could not be here. This is so amazing. She is very humbled by the accident. She values every breathe now in a way that she never has before. The reality of what could have been has set in. She has said it before but now she is realizing what all she would have missed. It has really impacted her.
We are so optimistic for the doctors appointment tomorrow. Thank you for the prayers and for checking in on her. She really loves to hear from people. Being home bound for the most part has left her with a bad case of cabin fever.
Happy New Year, The Brandau Family
Hi everyone,
We hope that everyone had a great Christmas. We enjoyed our time with family. Christmas Eve we all attended a beautiful candle light service at church. The holidays really took a toll on Tina. Even with us keeping it simple this year it was far to much for her to handle.
The Wednesday after Christmas Tina slept for 20 hours. She has had bad headaches ever since and worse proplems with her memory. With all the problems she says it was still worth it to see her family. So having learned our lesson we will be staying home alone for New Years Eve. If memory serves me correctly this is the first time in twenty years we haven't had a party or gone to a party. Tina is very sad that she isn't up to celebrating this year.
Please keep Tina in your prayers as she continues to heal. She will see the headache doctor on Jan 2nd. I hope everyone has a great New Years Eve and a blessed new year. Thanks, Ken
Hi all,
Tina went to her parents for a few hours today. She has had a very bad headache all day today. Tonight there is a candle light service for Laura Zuk that Tina really wants to go to. Laura was 19 and killed in a car accident eariler this year. She has been part of the family since Tina's sister married into the family many years ago. Tina simply can't hold out to go tonight, which is breaking her heart.
We are getting ready for the holidays. This year is very simple. Jesus and family are the only focus. If we don't undate again before Christmas or if you don't check back before then, we want to wish you and your family a very Merry CHRISTmas. Please continue to pray for Tina in her healing. Thank you again for all the prayers you have sent our way.
God Bless You All,
The Brandau Family
Hi everyone,
Yesterday was a very full day. I took Tina to the store to buy some clothes. Not being able to do anything for two months, she has gained weight and needed something to wear. We both knew that it would take a toll on her but it needed to be done. We thought about ordering on-line but had no idea what size she needed.
Today we paid for yesterday. For a while she could not speak and has had speach problems after that. The medicines seem to be working but we haven't gotten them just right yet. The next few days are very important for her to get her rest because next week will take a lot of energy and she really is looking forward to celebrating with family.
Many thanks for all of the cards, well wishes, and prayers. If you don't check back in before the holidays, Merry Christmas to you and your family. God Bless You,
The Brandau Family
Hi everyone,
Monday was a very quite day. Tina slept most of the day. Today started out with a bad headache and eventually she had to take one of her severe headache pills. They really help with the pain but make her very dizzy and nauseous. Her parents were able to help her finish wrapping the kids presents today and she is about as ready as she is going to be for christmas. Thank you everyone for your prayers and emails. Ken
Good Mroning,
This is Tina today! I have a really hard time reading so I am very thankful i am a good tyist and can just let my fingers go. Please forgive any typos, I can't proofread and this doenst have spell check.
The medicines are helping a bit. Yesterday was so fun. Over time I have found out that I cant remember - a lot. I was engaged before and dont remember it so I had a ton of fun with it. He was Brad Pitt and Fabio rolled into one, we were going to live in Jackson Hole on a large ranch. I havent made up the reason we split up yet. It is sad that I dont remember so much but at least I am having fun with it - did you know that I was a salsa dance teacher for a while - I just havent decided where it was I taught dance, I am leaning towards Spain ;)
I am a bit better, my spirits are still high and I am still determined to get back to 100%. I have accepted the fact that it will be a long road. I have just decided to enjoy the ride. I know God will lead the way. For those of you that have heard me while it is difficult to speak, you know that I sound like the nice lady at the chinesse restaurant down the road. I am hoping to leave my chinesse past behind me soon. Thanks so much for all of your love, thoughts, prayers, and support. It has made all of the difference in my healing, God Bless You All,
Tina
Hi everyone
Tina had a great time resting at her parents today. An upside to this is the time she gets to spend with her parents. Its great to see her be able to be with her parents without twenty other things needing her time and attention. Today she seemed to do good with the increased dose of one of the medicines, however they did seem to make her more tired. This can be a normal side effect as you increase this medicine. The change in medicine seems to be helping, but should take about a week before we see the full effects.
Thanks to everyone for their help and prayers.
Ken
Hi Everyone,
Today has been a better day. We talked with her neuro doctor. They changed her medicines again. We think we are on the right road. She's very sleepy but says the headache is less. We still have some room to move with these before we have to change types altogether.
She is super excited, she gets to leave the house tomorrow. She is going to day care. She went on Tuesday for a couple hours and got a great nap and had a great time getting out. For those of you that don't know day care is going to her parents house for a little while so I can do some work. Only working a few hours here and there is really starting to hurt. So tomorrow she is off to day care again.
We know we are talking about three months to one year but are excited that she isn't crying in pain today!
Thanks for the prayers and thoughts! Ken
Hi Everyone
The doctors appointment yesterday went well. He said all the problems she is having is not uncommon with the injury she had after seven weeks. The rate for full recovery is about 85%. The big question is how long. The range is typically three to twelve months. He said it is not uncommon to show little improvement for a length of time and then rapidly improve over a short period. She will do her testing in the beginning of January to find out what areas were affected and what rehab can be done for those areas.
The headaches are sometimes better, but still always there. She still gets extremely painful ones that bring on the speech and balance problems. I have a call into the pain doctor to see what else we can do for her. When we met with him he told us there were many things he could do, so hopefully he can modify the medicines she has now or give us something different for a better result. Thank you everyone for your thoughts and prayers. Ken
Hi all, it's me, Tina!
We saw the next doctor in the process. Today we got the next step in the game plan. This email is part of the plan. He wants me to try to do things I have not be able to do thus far and see how quickly they impact me.
Well I flunked this first test. My head is already pounding badly enough that I am sitting here with tears streaming down my face. I will summarize his feedback quickly. Basically, I am at where he expected me to be. We will do more specific tests *8 hours worth) over the next several weeks.
Good bye for now, more updates from Ken tomorrow. Thanks for all of your prayers and wishes,
Lovingly Tina
Hello everyone,
Today was a rough day for Tina, she had a bad headache and speech problems all day. On the bright side her balance seemed to be better. Last evening we were able to take her by church for a couple minutes and see her friend Carol at the Christmas tea. This made her week and unfortunately weak. She is getting well enough some moments to be frustrated with being stuck in the house. She isn't up to talking on the phone very much, but loves to get emails from people.
We will update after the doctors appointment Monday afternoon. Thanks for all your prayers and support.
Ken
Hi, this is Eric,
Today started off rough. Mom's headache was very bad. Usually, laying on the couch helps but it didn't work today. She decided to take a bath. She said it helped her a ton. She still has a bad headache but isn't squinting in pain.
We got an interesting call today. Mom has been trying to get a copy of the pictures taken of the path after she got hurt. No one from the park has returned any messages. Today, she got a call from the park's insurance company. Hopefully, she will be able to see the pictures. A lot of memories are missing and she doesn't know if what she recalls is what it looked like.
Tonight is the Ladies Christmas Tea at Twin Oaks (her church) and she is very down that she is missing it. They are having a bell choir and she simply can't handle the sound. She wants to be herself again, but she's not. Please continue to pray for her.
Thanks, Eric
Good Morning,
Today started off with good news and bad news. The bad news is that we didn't give Tina her medicine for 10 hours instead of 8 hours. This morning she had a period of almost 4 hours that she couldn't speak and had greater than normal difficulty walking. The good news is that this is the first time this has happened since she started taking the medicine!
We have one more change in medicine to add to the mix this coming Saturday. We need to start taking one of the medicines twice. She has done well with it so far so we aren't concerned about it at all. We are excited to see what impact it will have on her. After we add this last piece, it is all about time, finding the right doses of each medicine, and rehab. We have the first of the series of tests starting on Monday. The goal of those tests are to help us find the areas of the brain that aren't working right and give us exercises to work on targeted areas.
Thanks again for checking in on Tina and for all of your prayers,
The Brandau family
Hi everyone,
It is great of Daniel to set up this site so we can tell everyone what is happening with Tina daily! We know that many of you want to know but don't want to disturb her. We did start the new medicines last week. They are helping somewhat but not nearly where they need to be. The headaches at least are getting better and at some point each day have gotten to a place that they are tolerable.
She is still having episodes of speech problems, weakness in her legs, lots of problems walking, and memory issues. This past weekend she had a really rough day. The kids and I had gotten out the Christmas stuff to decorate and Tina told me that she doesn't remember last Christmas at all. She has a Christmas village that she used to love to set up but hasn’t for the past few years. She was very surprised that she liked it so much. We are finding more memory issues each day.
On the bright side, for those of you that know her well – you will find this very funny – while putting up the Christmas tree she told me I was putting the lights on the Christmas tree wrong - actually telling me that I was not doing it the way we have done it in the past. It ended with her bursting into laughter because she didn't remember and was just giving me a hard time. At least she can laugh at all of this!
Thank you all for the prayers and well wishes, Ken, Tina's husband
Hi everyone,
This week has brought many doctor appointments and finally the hope of some answers. As of Wednesday we were still being told that they didn't know what was causing her speech, vision, or dizziness problems. They actually told us that it was most likely anxiety and wanted to refer her to a psychiatrist. For those of you that know her well, you can only image how well that went over. I pushed back on the doctor and they finally agreed to have her looked at further in the pain clinic for her headache. On Wednesday, we met with the neurologist in the pain clinic. Within minutes, he had assessed Tina and said that she is having severe migraines that are causing most of the symptoms. Up to this point, we had been told it was definitely not migraines. There are a couple symptoms that are very rare to have with a migraine. That is par for the course, Tina is unique. He mapped out a very thorough plan and started us on the first steps. He has given us several medications that we are slowly adding one by one this week. We seem to be seeing some results so far and hope to see more improvement as time goes on. Even if these medicines don't work, there are sill many more options to explore. We are left with great hope. In summary, the medicines seem to be working so far with her headaches being better with brief moments of her being closer to the old Tina. If the medicines work, we will move on to the next phase. Tina will complete cognitive tests and assessments. We know for certain that she has memory deficits but are not sure what else is going on with her cognitive functions. The testing will begin in a few weeks if the medicines continue to help her improve. I would like to once again thank everyone for their help and support. Tina gets a real boost from all your emails. Please continue to pray for her. We have the best news so far but realize that we have a long road full o f hard work ahead of us. Please feel free to forward this to anyone that I have left off the list.
Thanks Again,
Ken Brandau