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Thread: Happy Valentine's Day!

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    Distinguished Community Member andromeda31's Avatar
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    Default Happy Valentine's Day!

    Hello!

    It has been so crazy busy here that I haven't had much computer time at all. Brian just finished his sentence...he ended up doing the 'bracelet', so home jail. It worked out good (as that can be!). Of course, then all the running around fell to me so that kept me occupied since it is wrestling season for Brandon which means daily practices and lots of meets and tournaments. Last Saturday I spent all day long sitting on a bleacher seat with only 1 time that I got up. I got a fitbit for Christmas and I only got 2200 steps in that whole Saturday, when normally I can get 10K in by noon on a typical day. Normally Brian would pick Brandon up after practice on his way home from work since he finished around that time, but I had to do that driving too since that was not allowed. It was crazy. I am so glad gas prices are down!

    We have also had a lot of appointments, Caitlin had her neurosurgery followup...hadn't been there for 2 years so that was nice! It was basically in and out, I was disappointed that we didn't get to see the doctor though, just saw a PA (physician assistant). I could have been more assertive and see the doctor, but I felt a bit ambushed they way she asked if I needed to see him. Like, well we did drive 2 hours....but I could tell the way it was asked that they did that to save time. I did just open the EOB this morning and it was billed very low so I guess that is good. Usually it is $120 and it was billed at $55 so I guess I can't complain too much. She is doing well with her shunt and I do know the number if she should have any problems.

    The big news is, she also had her CP Clinic appointment in January also. Her spine xray showed her curve is at 60 degrees. :( I was not surprised based on her appearance, the way she sits in her chair, and the way her ribs flare out....it was obvious to me that it was getting worse (scoliosis). It has gotten 18 degrees worse over the course of a year....which has led me to finally agree to the spinal fusion surgery. She is booked for July 31. I chose the summer so that it doesn't interfere with school or family life. We really don't do much in august and since it is summer, we won't be trapped in the house like we were when she had the hip surgery in the winter. I had though winter would be good but it wasn't. I have talked with Tracy (Meg's mom) on the phone about it since Megan had it already. One thing she said was that in summer, it was easier to get clothes on, which I had not thought about but I am glad we are booked for summer! It will be nice to not worry about wrangling a winter coat on over sensitive healing scars! I also talked on the phone yesterday to a lady I met when I met with the congressman last year...she is an adult with CP and she had it done when she was 20 so it was also nice to get a patient's perspective. She also had it done at the hospital we will be going to and she said she has some friends that had the surgeon we are using and that they had even better results than hers so that was also a relief to hear. I am ready for Caitlin to have it done....I have noticed that we have slowly cut back our life because of her curve/back pain over the past year as it has worsened. We used to go to the mall or to the movies all the time and now hardly ever. Things are a little better with the new wheelchair, but she still has pain, which really is a big reason I finally agreed. So we will be having a LOT of appointments in the next few months to prepare for this surgery. I have a stack of lab draw orders I need to have done, a little mad at myself as I wanted to get it done today but forgot to call yesterday and schedule it. Used to be able to 'walk-in' to the lab but not anymore. Might have to wait until next Saturday since this week is busy too. The boys have had a lot of school activities too in addition to the sports stuff. Band concerts, school family nights, and now teacher conferences this week, etc. All good things, but they sure help to make this winter go by fast!

    I bought myself a kindle with my Christmas money, just to keep me from being on my computer so much. It works great! I can quickly skim thru my facebook newsfeed on it...but that is why I haven't been on here at all. I need to get it set up on my kindle to view braintalk! I am still working on figuring out how to download books from the library on it too. The other night I was looking for one to try out but everything I wanted to read was on hold. We read a really good book for book club last month called Me Before You by JoJo Moyes. It made for a great discussion! If you're looking for a good read, it is worth the time. It was surprising the people who disagreed with what happened in it and who was in favor of it. I've been in this book club since 2006 and it was interesting that some of the ladies I thought would be totally against what the character did were not and vice versa. Anyway, just wanted to get a quick post up on what we've been up to. I need to go take down my Christmas tree now....that is truly how busy it has been here. I have NEVER left it up past new year's day before, ever. All the ornaments are off and put away, just the tree with red & white lights and red ribbon...the Valentine's tree! LOL!

    Hope you are all having a Happy Valentine's Day!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Lisa it's so nice to see an update from you! Wow you sure have been busy... And Kudos to you for 10,000 steps by noon. I got a fit bit too and I do about 10,000 for the day and I thought that was good. I'm so sorry that Caitlin will need surgery. Kathleen has had a surgery in the winter and one in the summer and yes the summer was much easier on everyone. Just to get fresh air was a plus. She her energy back much easier.Praying that all goes smooth and she has an uncomplicated surgery and recovery. Kathleen is still having issues with her c-spine (AAI) and her surgeon is so torn between surgery and just watching it. A fall or jarring of her neck could be quite serious. I hope things will start to slow down a bit. I hope you enjoyed your valentines tree. LOL. We've had some years that I've left it up way too long... What a mess that would be taking out a very dry real tree! You always amaze me! Keep us posted...
    Hope you're enjoying the day!!!
    Mary Grace

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    Welcome Back! I've missed you!!

    You win the trophy this year for Last to Take Down Christmas Tree! I was holding onto that trophy, as ours came down at the end of January, but you definitely own it now! And so clever of you to have it double as a Valentine's Tree. You are brilliant!

    What is a FitBit? I looked it up, and I'm still not sure, although I only glanced at the site. Is it a pedometer? I have one of those I used to wear on my pants' waist. I wore it on my walks, so I was able to determine the paths I needed to take to get up to 2 miles. Does the FitBit calculate how many steps you've taken as you go about your daily activities?

    Is Brian able to drive now that he's served his sentence? I'm so glad that he got house arrest. Far more sensible and practical for him and your family situation. Was he allowed to go to work and to drive to work? Or was he required to remain in your home for the duration?

    I'm sorry that Caitlin needs the spinal fusion surgery. But I'm grateful that you have Tracey and the lady you met last year to give you guidance and advice. I would guess that summer would be far easier than winter for a variety of reasons. Do you feel that the wait for her new wheelchair contributed to the worsening of her curve? Bless her and you ~ my prayers are beginning right now ~

    How do you manage to accomplish all that you do every day? I agree with Mary Grace ~ you amaze me! See if you can squeeze in some Lisa Time to rest and relax.

    HAPPY VALENTINE'S DAY TO ALL!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #4
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    It is a fake tree so there were no worries about needles. :) It is so weird to see it gone, but kind of nice too...now we can look forward to spring. For Kathleen's neck, do they want to do fusion on it? It would be scary to worry about falls and stuff. My Dad had surgery on his neck a few years ago, and he was and still is very active...which does make me feel a bit better about Caitlin's surgery. He had his done by a neurosurgeon, but it was pretty high up on the neck. Caitlin's will be done by an orthopedic. She just also had a wellness checkup too this week and it was nice to talk about it with her pediatrician too.

    The fit bit is a pedometer, but also tracks so much more...it syncs up with my laptop and you can login to the fitbit website and it will track your sleep, weight, activity, etc. You can also 'friend' other people with fitbits so at first just Brian & I were 'fitbit friends' since he won one from work through their wellness incentives. So you can compete for the number of steps per week. Now one of my neighbors friended me too so I feel a little more competitive...after yoga (which does not give many steps toward my total) I will hop on a treadmill and walk for 20 min just to get my total up. It doesn't take too much. Just getting Caitlin up in the morning and bathed, dressed, fed and out the door I can rack up 2000 steps all before 8am! It was eye opening to see how active my morning is! I used to have a regular pedometer, but that was a hassle compared to the fitbit, I remember having to calibrate it by taking steps and stuff and it used a battery. The fitbit sends me an email when the battery is low and I can charge it by plugging it into my laptop by USB cord. It also shows distance walked in a day, stair levels climbed and you can set goals. I love it, it is fun to see what I did, and I can also check the 'dashboard' using my kindle with their free app.

    Brian was able to drive the whole time (thank God!) and he could go to work and to AA meetings but that was about it. He does have an ignition interlock (blow to start) thing in his van and has to have that for 15 months total which I am totally fine with. I actually think they should make all those with a DUI have that thing in their vehicle. Here in WI, it is only for 2nd offense and up unless there are other factors on the 1st offense (which he had the kids in the van so that is why he got it). He has to blow (0.00) to start the van and it will randomly beep during the driving and he will have to provide a 'blow' to be able to keep driving. If one does not blow, it will beep the car horn (automatically) and the car lights will flash. It also records all the results on a chip that gets replaced every other month (of course for a fee). But it is a little bit peace of mind for me to know he has to stay sober. He has been sober since the arrest for the DUI but this is an extra layer of security on top.

    I do think waiting so long for the new wheelchair did not help the curve. My hope is that the new chair will prevent it from worsening even more from now until July. I have also watched some of the dvd they gave me with patient family interviews, doctor interviews and PT interviews about the surgery. The packet of info they gave me was so basic....mostly things I already know from her being in the hospital so much already. Also the patient interviews on the dvd too, they talk about things like, where to stay (hotels, McDonald house, etc) and where to eat and how good the hospital food is, lol. I already know all that! I am working on my list of questions for the doctor though, things that are really important, like cadaver bone or shaving hip bone to gather bone for the fusion, who will order her seizure meds into IV form since our neuro is at a different hospital, etc. When I talked on the phone with Tracy, and J, I took notes on their answers (and I had a list of Q's for them all ready!) so I feel good that I am gathering good info on what to expect. One good thing is the ortho floor is in the new wing of the hospital, it is a LOT nicer than the old side. Rooms are a lot bigger, desk area for the parent and a curtain for sleeping, a window that looks not at a brick wall...(I was in a room like that once! No sunlight, brick wall 2 feet away from the window).

    Well, gotta go make my menu for the week and grocery list, still busy, the way I fit it in though was I had to cut back on my computer time. :( But that is not all bad though...trying to set a good example to the boys, especially since we take their electronics completely away during the school week! Wrestling goes through the end of march so once that is done life will calm down a bit. Logan is wrestling too now, his started up last week but it is just more of a 'fun' learning the moves program through the rec department. Brandon likes it though since the coach is also Brandon's middle school wrestling coach so they let the middle school boys come and help out and Brandon is all about that! I wish it were warmer here so I could do something fun with Caitlin but it is negative windchill so we are staying home by the fire....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  5. #5
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    ((((((Lisa)))))) ~

    Thank you for taking the time to answer all of my questions!

    The FitBit sounds like a handy gadget, and far too technical (and unneeded) for me. I never go anywhere, other than my pre-mapped 2 mile morning walk. And I remember wearing my pedometer for an entire day once and was astonished at how many steps I accrued at home. I know how long I sleep, and I have this old thing called a scale to tell me my weight. I don't have a laptop, a smart or iPhone, or iPad, Notebook, or Kindle. I am so 1990s. Just a tad bit more advanced than internet dial up.

    That's great that Brian was able to go to work and AA meetings. Much more meaningful and productive, healthful, and empowering for him than sitting in a jail cell. I agree with you that all DUI cases should have the breath monitor in the car, and I even think that it should be required permanently for a DUI driver. If that was mandatory, just think of all of the people who would be saved from drunk driving accidents. Congratulations to Brian on maintaining his sobriety.

    Great idea to make a list of questions about Caitlin's surgery. You can just keep a running log for the next few months. And you have Tracey and J, experts, helping you, which is wonderful. I can testify that a newer, larger room with a view, makes a huge difference in the hospital experience. When Jon went from the new ICU to the old one, which is also Step Down, it was an enormous adjustment for us mentally, psychologically, emotionally, spiritually. We went from spacious to cramped. From privacy to hearing everything said or done in both rooms adjacent to Jon's. From a picture window of the sunset every evening to a narrow window above the bed, which provided light and no view. Makes a HUGE difference for the patient and for us, parents, who are there 24 hrs/day.

    Praying for better weather for you. Are you getting the beginning of the next storm moving in?

    Be well. And take time for yourself. You deserve it!

    Here's your smoothie ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    No storm here, just lots of cold air! Today, high of 4 with negative windchill. Good thing I am stuck home....got a phone call from school yesterday afternoon, Caitlin had a big blowout poop so I went and picked her up so she didn't have to ride the bus home and chance another incident. She had one the night before but I thought it was just from the miralax she had over the weekend. Guess not! The loose stool bug is going through their classroom apparently the teacher said. I am glad I kept her home today since she had another big one today. Good thing I kept her in her jammies until after she pooped, I just had a feeling! And I laid a towel down before I put her on the floor....right now I am doing a load of wash on the sanitary heavy load setting!!! Gave Miss Caitlin a nice shower and cleaned her all up for the day. I was hoping she would be better today since we have church tonight and I am making soup for the supper (we do soup suppers there for lent). Lasagna soup...delicious! Last year we called it Lenten fast since the soup was just, well, so-so would be kind! So this year I signed up to bring a pot of soup for a few of the weeks. My motto is to just not complain, do something about it! :) Even worse today is some sensor in Brian's van went out so he had to get it towed to the service place and is without a vehicle until it gets fixed. Good thing his brother works near him, they work for the same company but there are multiple buildings all over town. Plus he has to drive past our town to get to his house (they live further out from work than we do) so it isn't too inconvenient for Brian to get a ride from him thank God! It just stinks that it has to happen on the night we have the most stuff going on. In addition to church (which Brandon & Tyler are required to attend on Wednesday evenings for religion class-when it is not lent, they have their religion class that night during the school year), Logan has wrestling for an hour. Ugh! Hopefully Brian can hitch a ride with his brother tomorrow morning too since I scheduled Caitlin's lab draw for tomorrow thinking that was the one day we had free to get that done. So cross your fingers that we get all the logistics for this worked out! :) Fear not, I have been taking time for myself in all this shuffle....been doing great at getting to the gym (except for today!) and feeling great with getting my workouts in. The IUD has been working great, I have so much more energy. I must have been really anemic before because it is amazing the difference. My only wish is that I had had it put in a year sooner vs waiting so long and thinking it over. Also hoping that Caitlin's labs go smoothly, these are the pre-surgical workup that the orthopedic surgeon wants done to make sure she is ok for the fusion. I have a huge stack of orders, they will probably be taking 2 or 3 large vials from C I am guessing. Hope they find a good vein!! Going to sit down and read the paper for a little break...

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ((((((Lisa)))))) ~

    Hoping that all went well with Caitlin and church tonight, and there were no more blow outs! Hoping also that your lasagna soup was well received! Praying that Brian's brother will provide needed transport. Prayers too that Caitlin offers up a really good vein for her blood tests.

    I'm happy for you that you are feeling better and have more energy with the IUD. You need all of the energy you can get!

    Always take good care of yourself, dear friend ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Lab draw went easy...had the lady we usually have so she got it right into the vein with no tears from Caitlin. I felt bad for the little boy that was in the other chair though (they have 2 chairs in the little draw room), his mom had given his morning dose of meds and they needed it to be trough for lamictal. I spoke up and said that I had done that a few times (given meds accidentally) and it did work out as long as it had not been an hour yet as I had been told after an hour the meds are absorbed. She had given it at 7ish though and it was almost 8:30am. They ended up poking him and holding the blood and calling the doctor to see. Boy did he scream! Caitlin made comments about it and I told her, well that is how you used to be! So glad she is over that now at least.

    Brian's van didn't get finished yet so that was a bummer. Of course I have tons of stuff tonight to work out. So glad our parents live nearby and are helpful. My mom picked up Brandon last night and Brian's parents took Logy to wrestling and tonight Brian's parents are bringing Brandon to piano lesson since I have a church council meeting. I only have that one night a month and wouldn't you know all this would happen this week, ugh! We are putting a new battery in his van in hopes of avoiding these problems again. It is so cold here lately which affects that interlock device in his van from working properly. It is such a pain and I sure hope he remembers what a pain it is!

    I have been adding probiotics to Caitlin's applesauce yesterday and today and feeding foods that are helpful for stopping diarrhea. She did have a little poop this morning, liquid, but just a small amount. And then this afternoon she had another poop, but it was more 'peanut butter' consistency and a more 'normal' amount so I am hopeful that that was the tail end of that virus! Fingers crossed! I am debating sending her back to school tomorrow...she is otherwise feeling fine and playing with her kindle and chatty. I was hoping to get started on our taxes this week but all these things have thrown a wrench into those plans. Maybe this weekend....such an exciting life! LOL!

    Time for a smoothie!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ((((((Lisa)))))) ~

    Brave Caitlin! So happy a good vein was found. Been there, done that, so many times. It used to take three people, besides me to draw Jon! He is quite strong, so we had to hold him from all sides.

    I'm exhausted just reading about one day in your life!

    I hope that Caitlin's poop firms up, and she's able to return to school. Then you can tackle the taxes! Oh yeah! Such fun! I know. I need to do the same thing.

    Here's your smoothie You need it!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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