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Thread: September update

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default September update

    Hi!

    Thought I should post...as always it is busy here. The running around for school is unbelievable. I think life was easier when my kids were little, much as I didn't think that at the time! This week I am trying to figure out how I can be in 2 or 3 places in one time for 2 different nights! Ugh. Still trying to figure out how I can make it to book club on Monday, I read the book this month and I have missed the last 2 mtgs so I don't want to miss again. But Brandon has a cross country meet, dog has obedience class and there is a fundraiser for the boys' school at Stevie B's (a pizza place). For sure the pizza thing is out and probably book club too. The kids have unbelievable amounts of homework every night. I think it just seems magnified since I have so many that I am overseeing. The other night I grabbed a large cardboard and set it in the middle of the table so Brandon & Tyler would leave each other alone and focus.

    Brian has attended 3 AA meetings so far, he says it is helping him. He also has his appointment with the Options treatment counselor on Monday morning...not sure what they do there yet. He has not had a drink since getting pulled over. Yay! He said he had tremors at first but not anymore. He now drinks a lot of caffeine, but I have noticed he is backing off on that so that is good. That first week I bought him a new coffeemaker so he does that and also pepsi (the real sugar kind, I am fussy what I buy, no HFCS). Whatever works! Though in the long run, I do hope he can cut back on the soda, but I am not going to nag now. He still has a license but probably not for long as we got the notice to suspend in the mail this week. He will likely be able to get an 'occupational' one though so he can go back and forth to work. I also bought a breathalyzer for home for random checks, he has passed them all so far. We actually have 2 since I wanted one that went to 3 decimal places. I said he could put the 2 decimal place one in his van just in case he falls of the wagon. I sure hope he wouldn't be stupid twice...I said I will forgive this once, but never again. If you really want to see a tearjerker, watch this video, I was totally bawling and so did Brian when he watched it: https://www.youtube.com/watch?v=eubWYPhcEEo

    School is going great for Caitlin! She is up to 1 hour a day in her stander (which is her goal)! Seizure control remains pretty good...some odd eye movements here and there but nothing worth calling in. Hoping it stays that way! I emailed our wheelchair rep with our color choice, going to go with pearlescent white and an orange stripe on the back (if that is not too expensive if not included in base price)...with the seat being black and the white & orange she will look awesome at school! Their school colors are orange/black/white...the galloping ghosts! She will have this chair thru high school so it will be perfect. If it ever comes! Haven't heard back from the rep yet, I asked if she had any approvals back yet. I am hoping to get it before Christmas.

    I did get a bad phone call tonight....my sister's boyfriend is moving out, they are breaking up. I feel bad for her. Man when it rains it pours! Send some prayers her way, I think she will need them. She was like, "want to feel like your problems are not so bad" when I first answered. Wasn't expecting that bombshell, but it was weird for her to call so late (it was only 8:30pm but she is an early to bed girl). I think that is all for here! Hoping the thunder and lightning will pass over us...we had a bad storm last night that woke up Caitlin and the dog threw up it was so bad....and I have seen a few flashes and heard some rumbles while I have been typing now...

    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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  3. #2
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    Lisa, Ive been reading your posts. Just reading what your family has been dealing with makes me exhausted. It sounds like some things are going better... I pray that your family can continue on this healing path. So glad that school is going well for Caitlin. can't wait to see a picture of Caitlin in her new chair! Hopefully not too much longer. Caitlin must love being in her stander everyday. I can only imagine it's really good for her whole body. Keep us posted and I will continue prayers for your family.
    Mary Grace

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  5. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    If only you could clone yourself!! I wish that you didn't have to miss out on your book club, since that is something for you, some Lisa time, which is important. Any chance you could phone your club members and ask to change to a different night? They might say, "Yes." You never know ...

    Cardboard so the boys can focus on their homework. Great idea. Carve out some cardboard study cubicles for the kids. Let them decorate/paint them. Then set them up. In separate rooms if possible.

    So happy to hear that Caitlin is doing well, and tolerating her stander! Oh, I do remember those days with my boys. The days of being in the stander. Michael had a special stander with wheels, which allowed him to "walk." He only used it at school, and it was amazing to see him in it. I'm sure it is doing wonders for Caitlin.

    Caitlin's new wheelchair sounds ideal for high school. She should definitely be on the Pep Squad (do they even have those anymore?). In the winter, she will be a Snow Queen in her pearlescent white throne. I hope you receive it tomorrow!!

    Sending prayers your sister's way to heal her broken heart. May she find the strength to keep moving forward toward a more positive relationship.

    Wonderful news that Brian is attending AA meetings and is in recovery. Coffee is often a substitute, as is sugar. Ice cream, cookies, soda, etc. The body craves the sugar from the alcohol. Coffee is a stimulant. Alcohol is a depressant.

    Just a thought ~ get some bottled water and have it available for Brian. See if he can make that choice, because his liver will definitely benefit from water intake to flush it.

    Also try smoothies ~ healthy drinks, with fruit, a natural sweetener. Almond milk, or coconut milk, with berries, peaches, bananas, kale, spinach, carrots, etc. Brian's body needs nutrition and building up.

    Is Brian exercising? That would be helpful for him too. He can begin to refocus his concentration on being healthy, getting fit, being in shape, taking care of himself. For his beautiful wife, his 4 beautiful children, and himself.

    That video was powerful. I can certainly understand how profoundly you and Brian were affected by it.

    Good for you in setting boundaries. That must certainly provide incentive for Brian to continue on his recovery path.

    Sending ongoing prayers for your family ~

    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.

  6. #4
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    The book club is through the library so not able to change days...I used to just meet with a few friends but we would end up talking (socializing!) and not talk about the book so we joined the library book club in 2006. Seems weird to think I have been going for that long! It is nice though, I go when I am able, I do usually always read the book even if I can't go and then I email my thoughts to the librarian who moderates it. She reads the emails she gets that people who can't go send to her. It is not too often that I miss book club...it works good since my original friends that joined with me are busy too so even though we don't always get there I see them every so often when we all make it, and I've made new friends too! And have read lots of books that I would never have picked otherwise!

    Tomorrow we go to Milwaukee for the heart appointment for Caitlin & Brandon. I am not too worried about it, mostly worried that the dog will be ok for a long stretch until Brian gets home to let him out. I also got a letter today from Caitlin's neurologist in Madison....she is leaving. :( What a bummer! I liked her...it's always the ones I like that leave! So now I have to decide if I want to just see someone else there or switch back to Milwaukee since they hired more doctors recently. It is an easier drive to Milwaukee than Madison...for Madison you have to drive thru town a bit to get there. I did go to UW-Madison for 1.5 yrs so I know my way around ok, but Milwaukee is right off the highway exit and boom, there it is. And there is the comfort level of knowing my way around the hospital in Milwaukee where at Madison I got lost trying to find the café. I am going to think about it awhile though, her next appointment is in November, but the doctor's last day is Oct 30 so we won't be seeing her before she leaves anyway. A lady on fb gave me a good recommendation of who her son sees in Milwaukee so I will consider that too.

    I asked Brian what it was that helped, the sugar or the caffeine? He said both at this point. I did look at the Water Joe at the grocery store...might try that sometime for him. At least it wouldn't have all the nasty additional stuff that soda has. He is exercising a LOT....thanks to Ranger the ultra high energy dog! He has to walk him every morning, typically for a 40 minute walk around the 3 pond trails. I think that is a good habit for him to have. His ankle is still sore a little bit though or I think he would do more. He tripped down the stairs in the garage (2 steps) the day we went to the zoo (when we were back home and unloading the van). That was awful to see, I was getting C out of the van and I saw it all happen. He did have it checked at the doctor but he doesn't rest it enough, in my opinion.

    Not sure if they have pep squads anymore....we went to a basketball game last year and it seemed like there were not that many students there with how big the school is. When I went to school, EVERYONE went to the games! There were even a group of guys that weren't 'sporty' but they would dress up in camouflage and called themselves the 'bleacher commandos' and would get the crowd going with cheers. Ah the good ol' days! I was in band and every home game, the pep band played. I was so disappointed there wasn't a pep band either. I did look at the district calendar and they do play at some games but not all. Funny how the cultures are different...I only went to high school just 5 miles down the road from the high school my kids will be going to...not like in a different state or something!

    Anyway, I better head off to bed and get a good night's sleep for tomorrow! :)

    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!!

  7. #5
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    Hi Dear Lisa,
    Like Mary Grace, I am exhausted reading about your life! Especially this year - so many fires to put out, including just keeping the kids apart so they can get their homework done! Great idea about the cardboard! I am so sorry about your sister. I've seen her photos on facebook and she looks so much like you - I know she is very close and that you will be a big support to her. But at the same time, it's another worry for you and what I read is your life energy oozing away (out of necessity!) in so many different directions. Especially with the book club not being possible for this week or at this stage. I worry about you.
    I guess what I want to say is what sometimes worked for me (I am speaking with the benefit of 20/20 hindsight, because at the time, I didn't know whether I was coming or going!) when things were really really bad in my house - just too many demands - I thought 'well, I can stand this for a week. or a month.' I would put a time frame on being able to stand the bad luck or crazy pace or whatever, and I would think 'this is temporary'. Like when I was labour with the babies. This is definitely a 'stage' in your children's life, although I think your children will always be a happy, active brood, simply because they are majority boys! But they will settle down and need you in a different way when they become pre-teens and teens. When Caitlin is older, maybe she can come to book club with you.
    Everyone always says 'make time for yourself'. I'm not sure that is possible at certain times of life. Book club may mean taking an hour to read instead of doing the dishes or cleaning up when your kids are at school. For sure, you need to congratulate yourself for that, not feel guilty. Anyway, a little of what I've learned over the years and I don't know if any of it makes any sense, it's very early in the morning and I am not a morning person! lol - I send you a long girlfriend hug. I wish I lived closer so I could bring food and babysit while you go to bookclub!
    xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  9. #6
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Just popped on to write a quick summary of our appointment today. They had their echos at 1:30....we actually got there early which is not typical for me! I allowed extra time due to all the construction which was good since the exit is all ripped up yet, looks like a bomb went off truly! We had to drive all around these corralled areas to the road that took us around a new 'block' and led us to the street that goes to all the medical complexes. It is well marked so I didn't mind. I would not want to navigate it at night though! It was actually harder to get back on the highway after, they have an even more winding route around the construction for that. I think this is going to be a multi-year project. Anyway! They did both of their echos at the same time in rooms adjacent to each other. I stayed with Caitlin but popped in once to check on Brandon. He was fine, asking the lady lots of questions. I said to him on the way down that this would be a good exploration of health field careers for him! Like take my son to work day for me, lol! Each kid got to watch a movie while the test was done, it is just ultrasound on the chest so no big deal at all. He finished first and then came into the room we were in with C which was exciting to him since she had the movie 'Rio' which he liked better than the one he got (Lion King). I figured something was found when the doctor came in C's room and took some additional pictures/views. Originally it was just a technician doing the test but I know not to ask them since they are not allowed to say anything to the patients. Everyone was super nice there! The heart center is in the brand new part of the hospital so all the stuff/rooms are big & nice too. Lots of room to move her wheelchair around and park it. After the test, we went into an exam room to wait for the doctor. I had hoped to sneak down to the café inbetween and get lunch after the test, but oh well. The nurse came in first and asked a ton of questions....more even since Brandon is a new patient and had nothing in their computer. Caitlin didn't need to answer too many since they already have her in the files. We had to wait a bit for the doctor which was not a big deal (except being hungry), kids had their kindle/Nintendo ds and I had my laptop to keep us busy. She came in eventually (the previous patient took longer or something, which I understand and was not bothered by) with a med student and a resident too. Whew! I figure when they all come in there must be something interesting for them to learn. She asked a lot of questions, examined Brandon first. The subject of Marfan's came up again...I say again because during the questions I said that when Brian was young, doctors thought he might have that and when we had genetic counseling after C was born, the counselor recommended he have his aorta checked due to the many signs he has of that (high palate, flat feet, pectus carinatum -repaired when he was 15, long arms, tall). She measured Brandon's 'wing span' which is longer than he is tall which is a sign of that. He also has 'flattish feet' and can do the double jointed finger stuff and I forget what other ones they check...had to go to the bathroom quick while she was doing them all. Did I say the echo showed that both kids have enlarged aortas? But neither have the bicuspid aorta valve (which was why we came in)! They are only at the 'high end of normal' though but due to those signs they show (C has the crowded teeth -high palate), she is concerned there may be a genetic connective tissue disorder or something going on. We have to bring them back in 2 years for another echo to check if there is any change and also recommend consulting with a genetic doctor to test for the connective stuff. I guess I am not surprised. She answered my questions and commented on how well I was taking it. :) I was like, "well with all of Caitlin's issues, nothing shocks me at all, I won't burst into tears or anything here." Oh that was another thing they asked, hernias....Caitlin has had 2 already repaired (umbilical and groin) and Tyler had an umbilical hernia repaired as a baby (his was gross, the surgeon actually had to create a belly button for him there was so much extra skin! He did a great job at it too, but he does a lot of bariatric surgeries so I think he is used to extra skin.). They are still interpreting the data and she is going to call me in a few days once the report is done. They set up an online chart for Brandon too, that I have proxy access so I should be able to view the report there too (until he turns 13). I am still processing this all yet, time to get to bed and get some sleep, it has been another crazy 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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    Hi Lisa, Oh I understand this better now after reading this more detailed report (your facebook shorter version was the one I read very late last night and I wasn't sure if the news was good or bad - now I understand it's a bit of both). Good thing the aorta problems are not bad and bad thing that there may be a connective tissue genetic problem. The problem isn't what you have now (which is four gorgeous children and the boys are healthy) - it's the future and what that might bring, which is unknown, I guess. I'm not sure what doctors expect us to make of these conversations. Right now, your kids are doing fine and Caitlin, bless her, is stable. I hope that you can live in the moment and not worry too much about what 'might be'.
    I read this today online and I thought it was beautiful - wanting to share with you today, my friend http://articles.complexchild.com/jan2013/00440.html
    Hugs xoxoxox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  12. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    Okay, honey, you need some extra ((((((LISA)))))) ~

    First, your stoicism, when the doctor was explaining the findings and concerns. This is something we learn, or we do innately, I'm not sure. But, when a doctor delivers bad news to me, generally, I manage to be strong, asking questions, wanting facts, seeking answers. As you did. We need time to process what we've been told. When one has gone through as much as we have with our children, we react differently than someone, who's child has just been diagnosed with something for the first time. You weren't surprised. You knew about the signs/symptoms and that Brian had been examined for Marfans. So, in a way, you were prepared for any potential outcome to these tests.

    Just like the breast cancer gene, I feel that it is better to know than not to know. Knowing gives you time to learn more about risks, treatments, options, and to benefit from technological breakthroughs in medicine, science, detection, prevention, etc. Genetics is a dynamic science, ever evolving. Your children are young, so they will benefit from advances in treating/recognizing genetic conditions.

    In the 1980s, both of my boys were tested for Fragile X, and to ensure reliability of results, Jon's test went to one university, and Michael's test went to another university. Both returned negative for Fragile X, even though they had so many symptoms, which seemed to correlate to that diagnosis. At that time, we were told to wait 5 years, before undergoing further genetic testing, as "that's how long it takes for the science to evolve." I would imagine that time has been shortened now, with the technology we have in 2014, which will only continue to expand.

    Your already overflowing banquet table just had another entree placed on it. And Donna is so right that it's often impractical and impossible for us to take time for ourselves. But it is still really important for us to make an effort to do that. Even if it is just sitting peacefully at your table, with a cup of tea, looking out upon the landscape. Take 5 or 10 minutes to just B E. And don't sit there thinking about anything. Just B E.

    May I also suggest that you and Brian keep the lines of communication open between you? How does he feel about today's test results? How is he managing those feelings? Explore any guilt feelings. Be honest with each other. This could be valuable in rebuilding trust and reliance.

    I call it the "Let's Talk About It" approach to marriage. The longer we hold resentments, fears, and emotions inside, the more difficult it is to talk about them. So, when it is apparent that an issue is at hand, saying, "Let's talk about it," leaves an opening to explore thoughts and feelings, in a calm, non-defensive environment.

    Finally, ((((((Lisa)))))), you're the anchor. You're the glue. You keep everyone functioning, and you meet every demand presented to you with determination and courage. And that is a tremendous amount of stress and pressure on you. So, just remember to breathe. To get some exercise. To sit and read. To do whatever you can squeeze into your life just for you. You deserve, and you need, that, dear friend.

    As the saying goes, "Life is a marathon, not a sprint."

    Prayers continuing ~

    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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