Scrolling Vision Issue Solved?

Well, we tried a reduction in the Trileptal, which was at 1800 mgs since Meridell.  She is now on 1500 mgs, and guess what?  No episodes of scrolling vision!!  This has been true for the last four weeks.  So maybe the scrolling vision had nothing to do with the concussions!   If that is so, then so much of the issues she had in school last year might have been avoided, but we are still more satisfied with the online high school option.  And this makes the whole lacrosse/concussion issue look less concerning.  Not completely, but a little less.   Her moods haven't changed with the reduction either, thank goodness!  

College Lacrosse or No?

Such a big decision. Do we allow her to go on the recruiting circuit, with coaches contacting her from around the country, or do we put this dream to rest, as an impractical one.  Being bipolar is hard, very hard.  Life is ten times more challenging.  College will be very challenging.  Playing lacrosse plus college, maybe far too much.  As a junior, life moves very quickly through the end of high school.  She still has the SATs, the ACTS, college visits, applications, and so much more.   Yet her dream of playing college lacrosse has been what has kept her marching on despite everything.  I am not sure what would happen if that dream dies.  Praying for wisdom.

Huge Milestone: Five Years Without a Hospitalization!!

We have now gone five years without a single psychiatric hospitalization since her three and a half month stay at Meridell Achievement Center in Liberty Hill, TX, where she received intensive residential treatment.  There the doctors were able to find just the right medication mix, which she has been on since then with just a few tweaks here and there and the addition of Lamictal.  Very few bipolar teens have gone so long without a stay in acute care.   Prior to going to Meridell, she had many, many hospitalizations.  I just can't say enough about this place.  Please don't hesitate to look into long-term residential treatment at the right place if you can't achieve stability for your  child through what is available locally.  We travelled across the country to get her the best care we could find.   Sometimes you have to do things you never thought you would do.  But joy comes in the morning so to speak.  We don't regret sending her away and neither does she.  But don't just look for a place that focuses on behavioral therapy and downplays the role of medication.  If your child is truly bipolar or schizophrenic or seriously depressed, behavioral therapy alone can't fix this.  You will just be putting a band aid on a much bigger problem.  The behavioral aspect can't be truly addressed if they are not on the right medications.  We have had far, far fewer behavioral issues to deal with once Caroline was put on the right mix of meds.  Academic problems, yes, but now major behavioral problems.  There is hope!

Online High School

So far, with one week into the experiment with the online high school offered through our school district, the verdict is a good one.  Caroline loves it.  She is still having trouble with math, but that isn't anything new.  The good news is that she can go to the district offices (two blocks from our house) where the online high school teachers have office space and get help one-on-one whenever she needs it.  Couldn't get better than this!  Most of the classes have weekly assignment deadlines, so she can decide on a daily basis which subjects to do first.  She could finish everything by Friday if she wanted to so that she has the weekend sans homework.  I really, really hope this works.  She can still participate in lacrosse with the local high school too.  And she has daily discussions about the subject material with the other teens who are enrolled in the online school.  We are so grateful to be in a school district with this kind of option.  The program seems quite organized and well-run.  As the semester progresses, we will see if this turns out as we all hoped.

Summer is Almost Over, School is Looming

Everyone starts school next week.  We are still trying to work out the kinks with the Online High School.  Because they are not offering Spanish or Chemistry online, she will have to take these two classes at the high school.  This wasn't anticipated so we have to help Caroline accept that she won't be able to do everything online like she wanted to.  We have two meetings tomorrow to sort out the details.  Hopefully we can get the classes at the times she needs.

I am weary.  Summer has its unique challenges.  I think overall it has gone very well.  No big crises.  I am trying to find out about fall lacrosse opportunities.  Got to keep her in the loop socially and athletically.

 I am tired.  Why I thought i would get anything done over the summer is puzzling.   My house is a wreck, half-painted, boxes half-emptied, laundry backed up.  We did a lot of traveling this summer, and my kids did too (camps, etc.)   So, maybe the fall will be better than last fall as far as a little time to breathe.   I always hope for this, and it usually doesn't work out.   Oh well.  But I am counting down the years left til graduation, just two more!  I love her to death, but it would be nice to be done with high school!!

Her more recent thyroid test did come back low.  I am hoping to get her on some thyroid medication because she is one sleepy girl.  All day, kind of comatose.  She sleeps way too much.

Speaking of sleepy, I am heading to bed.  Goodnight!!

Sorry for the Lack of Posts

Not really any particular reason.  Summer busy-ness I guess.  All is ok.  I don't think I can ever say great, right?  We are just kind of bumping along.  Caroline is taking summer school Geometry which isn't going that well.  She loves her new teacher, but the class is only three weeks long for one semester of Geometry, and it is too fast for her.  She might be retaking it again in the fall.

I think we are 99.9% sure we are homeschooling next year, using the district's online high school.  She was so stressed out last year, and so were we.  Wasn't worth it.  And she had seriously the best IEP team in the country I would vouch.  But a big public high school wasn't the right fit, and the small self-contained special ed classroom would not have been the right fit either as the kids were pretty intellectually challenged.   She is entirely relieved.  I worry about her taking the SATs next year, but we will be enlisting a tutor beginning in August.

Medically she started running a little "high," which looks like obsessiveness for her, so she is taking a bit more lithium.  But she is also going to be going on thyroid medication as she is clinically low (probably caused by the lithium,) which accounts for the low energy and sleepiness she has experienced all year.

She has played some summer lacrosse, but not much at all compared to usual.  Her knee is nearly 100% better following surgery.  There is a fall league she might join up in Denver.  I know she is longing to really scrimmage.

I hope your summer is going ok.  Summer can be hard, or really good, it would seem.  Caroline often does best in the summer.  Maybe it is the lack of school stress, or the sunny days.  I too do better with lots of sun.  That is one of the reasons we jumped at the chance to move to Colorado.  Despite the cold, it is sunny most of the time.

Talk to you soon!

Not Going to Camp

Caroline took the news about her not going to the camp in Canada really well.  She was relieved actually.  Between the knee surgery and her need for sleep, she was worried that things would go wrong.  We have come up with an alternate plan, which involves the beach, which she is very happy about.  So even though we are losing some money, the peace of mind we have now is worth it.

This is the last week of school.  She is being exempted from her English and Biology final exams.  She has only a big history project to turn in, and a few English assignments and she is done.  I am feeling myself relaxing already.  Like a huge weight has been lifted from my shoulders now that school is almost done.  Still don't know what we are doing next year.  We need some time to think and pray about it.

The Big "Where Should She Go to School" Decision, Again

Once again, we are not sure where Caroline should go to school next year.  The big public high school hasn't been that great, even with a well-followed IEP.  She is begging me to home school her, but I don't know that I want to.  The other options are the online high school for this district, an alternative school around the corner, or a private, smaller school, likely Christian.  Just praying for direction and wisdom.  This is one of the hardest parts of raising a bp kid, the whole educational aspect.  Nothing seems to be a perfect fit, and sometimes not even a good fit.    I want to do what is best for her academically and socially, but I want it to be best for me too.

Another Crisis, Another Day

This kid is amazingly accident prone!  Two weeks ago she did something to her knee in lacrosse practice, resulting in severe pain and a trip to the ER.  She was given Norco, and a heavy duty knee brace and we waited to get in with the orthopedic doc.  Got the MRI, saw the doc and he says that she nearly dislocated her knee cap, and in doing so, broke off a piece of cartilage under her knee cap, which then moved into her knee joint, causing the severe pain.  She has to have it removed to avoid further damage to her joint.  So she has surgery scheduled May 17th.  In the meantime, she has been home from school while on the narcotic pain meds, and receiving home bound tutoring again, which she hates.  School ends May 24th, and once again she is behind.  She went back to school this morning because the is OK without the heavy duty pain meds and can get by on Tylenol.  

In the midst of this, we have decided not to let her go to the camp in Canada in three weeks that she has been looking forward to all year.  There are just too many risks, especially with her knee, so soon after surgery.  And we realized that in order to get to the camp, she has to be up all night on a red-eye flight, changing planes in the middle of the night, and then transferring to a bus in the middle of the night to connect to a ferry.  Going without sleep is a sure recipe for mania.  That would be a horrible start to a week of camp. She is going to hate us.  But we just can't let her do this.  We are going to come up with an alternate vacation, maybe to a beach.  This year has been such a bummer.   If I could afford to take her to Hawaii, I would, seriously.  She deserves it.

Feeling Like a Failure

Do you ever feel like a failure as a mom?  I am struggling with those feelings this week.  I have been sick for 10 days, and sick enough that I have spent a lot of time in bed, doing nothing, or sitting in front of the T.V. doing nothing.  The house is a mess, the laundry backed up, the fridge was beginning to stink, my papers had exploded everywhere in the kitchen because I started a project and then got sick and couldn't finish.  My kids are frustrated with the mess, even though they help to create it, but my husband is a gem.  I am so glad the kids do their own laundry.  At least that isn't my responsibility. And I did get Caroline to thoroughly clean her room this weekend, which was huge as her room looked like a bomb had gone off in it.

But I think my struggle is deeper than the chaos of the last 10 days.  I sense a lot of disappointment from my younger two, over a lot of things.  Some of it is false expectations that they need to get over, some is legitimate over having a bipolar sister who takes so much attention, but some of it is disappointment with me as their mom.  I haven't always kept my promises.  I have made promises I never should have made.  I have been too harsh at times, and not strict enough at others.  I really wished for the perfect home life for my kids.  And of course perfection is a myth, but I find myself still longing for something I can't have.  

I am thankful that I know God is faithful, when we are faithless.   I know the truth, it is just that sometimes my feelings loom larger.  I just want to be over being sick, and I want to get through the paperwork involved in buying this house we are renting, oh, and doing our taxes, and getting organized enough before school gets out May 28th that the summer won't feel so overwhelming.  

At least Caroline is stable.  I have to say that every day to remind myself of all the blessings that come out of that one thing.

Back to School, Part-Time, Holding Steady

I haven't been writing because I have been sick and before that I was super crazy busy from about mid-March.  Lacrosse season and soccer season are in full swing, so adding the games and practices to our crazy family schedule has put me behind in everything, including doing our taxes!

Caroline has started back to school, one period added each week.  So far the results have been mixed.  Some days she has gotten the migraine aura of the visual disturbances, and some days she hasn't,   while wearing the special prismatic glasses.  I thought this would happen.  I have a feeling that we aren't going to see a miraculous "cure" or perfect solution to her sensitivity to florescent lights, or the projectors.  Not sure at this point of she will finish out school at the public high school this year.  We will see how this week goes.   If we don't see major change, we may just have to homeschool the rest of high school.  I can't even think about what to do about college yet.  One bridge at a time.

She is in heaven with the lacrosse side of things.  She is wearing a rugby helmet, the only one on the team who does.  So far, no injuries, no collisions.  She is making some amazing goals.  We are so proud of her!  We pray that her season continues concussion-free of course.

For those who have commented recently, please know how encouraged I am when you comment here.  I do read them and sometimes I don't have time to reply like I want to.  You are blessing to me and I hope this blog is a blessing to you!  We are in this together!!  For us it has been ten years and God has been so good to bring us stability now for the last four years or so.  I believe this kind of stability can  be found for your child as well, with lots of trial and error and the right help.  It might take years, but I really believe if you keep pursuing and advocating, solutions can be found.  Not a cure, not perfection, not even a truly"normal" child, but a much improved quality of life, for your child, and for your family.

We Missed Her First High School Varsity Game

Yes, my fault.  I messed up the times of the JV and Varsity games.  She scored some amazing goal in the Varsity game apparently.   But they put her in the JV game too so we got to watch her score several goals.  Sigh.  One day I will get it right!

Paralysis

I struggle a lot with feelings of total paralysis.  When you live in a state of constant crisis, not much else gets done.  I ask, "Am I just lazy?"  But then I remember my life is so very, very abnormal.  Regular motherhood is stressful and overwhelming at times, no matter how rewarding.  Being a constant caregiver magnifies everything by a hundred.  I don't start projects because I know I won't be able to finish them.  Today was a perfect example.  I could have done so much, but Caroline's needs got in the way.  I know it won't always be like this.  It is what it is.  My third child ask me why I am so tired all the time.  Well, I chalk it up to the emotional strain and the lack of consistent exercise, and whatever else.  Oh, and being 45.  Oh, and the antidepressants that I have to take or else I end up in a ball on the floor.  So I am soporific but sane.   But today is a beautiful day, quiet and sunny.  So at least I can enjoy this day that God has made.   And I am.

What is My Responsibility? What is hers

I have a feeling I need to stop hovering.  I am hovering over Caroline constantly: "Have you done this, have you done that, when is this due, don't forget to include this in your paper..." etc, ad nauseum.  I am so stressed out over whether or not she will be able to keep her grades up enough to play lacrosse that my stomach hurts.  I just don't want to deal with the fall out if she ends up sitting on the bench for the season.  The end of the quarter is officially the 15th.  I think we will have some wiggle room next week as far as turning stuff in.  But I can't even breathe today.  Having a hard time letting go of her, of my desire to make sure everything is done, done correctly, turned in within a reasonable amount of time.  This is exhausting.  Makes you just want to crawl in bed and pull the covers up over your head until school gets out for the summer.  I can't believe we have two more years of this.  I would love to think she won't need us to hover over her after the end of this semester, but I can't imagine her doing this on her own.   She misses the fine details of big assignments.  I don't know how she is going to handle college at this point.

And as we are looking to buy a house this summer, we are realizing we have to deeply lower our expectations of what we can afford now that he is in full time ministry.  I am having a hard time with this because I certainly don't want another fixer-upper.  We have had enough of that .  Raising Caroline is stressful enough.  We don't have the energy to deal with an old house that needs a lot of remodeling and repairs. Ugh!  You would hope that something in our lives would be easy!

Went to the gym to try to de-stress and it didn't help.  Drove around looking at houses and that really didn't help as everything I liked was way out of our price range.  Came home to my messy house and that didn't help.  I need Jesus today.

Birthday Surprise!

Caroline's lacrosse coach surprised her with cupcakes and a spontaneous chorus of Happy Birthday from her teammates at the end of practice yesterday.  Yes, so nice!  Thank you, Lord, for another affirmation of your love.  Made Caroline's day, probably her whole year actually.

Milepost 17

She turned 17 yesterday.  I consider every year that she is here with us a miracle.  Or even every year without a hospitalization.  We have been dealing with this diagnosis for ten years.  So many teens her age with early onset bipolar disorder are not half as stable as she is.  We are thankful to God for her, for great doctors and psychologists, for medicines that weren't around 20 years ago, for our caring family and friends.   I know she is too!

Slowly Getting Better

Oh, I am so glad for this blog!  I am so glad that I have a place to vent without judgement!  I have to be careful what I say on Facebook.  And sometimes I can't even pick up the phone to call someone to talk because it is just too hard.  I know you know what I mean if you deal with this kind of heartache every day.  You just don't want to talk about it because there is too much to say.

The concussion doc cleared her for gradual return to play.  Yes, praise God!  But I couldn't even rejoice over this yesterday because I have been holding my breath for so long that I still can barely breathe.  I just felt numb.  I think the only close analogy is if your child is suffering from a life threatening illness (which she is actually) and a doctor comes in and says that their blood count looks good, for now.  A little dramatic, but when you have a child who suffers every day, and has so little that is positive in their lives, and that one thing might be taken away, you as a parent cling to that hope as well.  Could it be an idol, something that has too tight of a grip on us?  Yes, I know that it could.  Life is more than a sport, I agree wholeheartedly.  Far more.  But I have a sick child.  With no friends.  And major academic struggles. She needs this.

The IEP head, again the most amazing gem in the world, has told Caroline's teachers to not count her missing assignments as part of her grades right now, so that her ability to qualify to play lacrosse isn't jeopardized.  Yes, she is an angel.  God has put her in our lives.  Just want to cry.

We will try to put Caroline back in school next week for just an hour or so at a time, to see if these glasses counteract the fluorescent light sensitivity  I know I said we were leaning toward just homeschooling her, but we decided that we need to give it one last try.  She needs to be able to deal with fluorescent light at some point because life is full of it everywhere.

Thank you for praying.  I felt it.

Megan

Anguish

I don't know what to say except that this is a really dark, dark time for Caroline.  She had a full blown breakdown last night, sobbing and raging for a long time, crying out, "Why me!?" over and over again.   Heartbreaking. The prospect of losing what is dearest to her, either from poor grades from so much missed school, or from denial by the doctors, is killing her.   I regret not homeschooling her this year.  I feel a lot of guilt over what I could have done that may have changed the course of this year.  I am bewildered by the silence of God.  Please pray for her not to lose hope or faith that God is good, that He loves her, that He will not always seemingly hide His face.  I was reading the Psalms last night, struck by how many times the writers cried out to God in anguish, asking how long they would suffer, how long God would stay silent.  I want her to experience the God of all comfort.

Sorrow

We are having a down day here.  Caroline told us she feels fat, ugly, and friendless.  Her one new friend apparently is into the wrong stuff, so she doesn't want to hang out with her.  We tell her she is beautiful and wonderful.  I don't think she believes us.  I am hoping she will go to the FCA meeting this week (Fellowship of Christian Athletes.)  She needs some new friends, fast.  

Prismatic Glasses

So we ordered these prismatic and tinted glasses today, which the vision doc said should help with the fluorescent light issues.  They will arrive in a week, and then we need to test her out under fluorescent lights.  I would love to see her back in school personally.  She goes back to the concussion doc next week to determine if she can play lacrosse or not, based on the report from the vision doc.  I am praying he clears her.  She has so little in her life that is positive and encouraging and affirming.  God you know what is best, but we are really praying for a yes.

For Real??

And to add to the absurdity of our lives here, I took Caroline on a nice, calm, trail ride at a stables about 2 hours away.  I made her wear a helmet, of course.  But what could happen on a leisurely trail ride?  Nothing, until her horse saw the barn at the end of the trek and decided to bolt.  Guess who got thrown off her horse?  Yep, my kid.  No one else, just my kid.  The one with the concussions.  Sometimes I wonder why God allows certain events to happen.  I mean, why didn't I get thrown off my horse which also decided to gallop to the barn?  Or the other riders whose horses followed suit?  She ended up with a very bruised hip.  Thank God it does not appear she hit her head at all.  But, for real??

Appointments, Appointments

I really do think I spend my life taking her to the doctor, the psychologist, psychiatrist, orthodontist, dermatologist, physical therapists, vision therapists, tutors, labs, you name it.  I love her so much, of course I want to do these things for her.  But man, the lack of routine can get old.  I struggle to find time to just do laundry, or organize, cook, or work out.  Often when I make plans to do these things, my plans get rearranged by her needs.  We do what we have to do but we all have the need for rest, for rejuvenation, and for clean underwear.   I thought this year was going to be so much better putting her in public school, having the big IEP, leading to more time for myself, maybe even getting a part time job.  I have come to the conclusion that until she is in college (and probably living at home) and working, my time is simply not my own.  Time to give up that hope for now.  There will be other years ahead.  

This High School Rocks!

The principal of the school was outside when we were going in for the IEP meeting yesterday and he stopped us to say how badly he felt about Caroline's problem with the fluorescent lights and that he was having his maintenance people look into lighting alternatives.  Wow.  Talk about a wonderful principal!

The meeting itself with the school nurse, school psychologist and the special ed head went very well and they agreed to pursue the five hours a week, home-bound tutoring.  No one batted an eyelash but all were completely sympathetic and eager to do whatever it takes to help Caroline succeed.  We will need to get another clearance from a doctor before she can play lacrosse.  No surprise there.

I found out about something last night that might be of interest to the neurologist.  Something called occipital lobe seizures, which often present as headaches and visual disturbances, brought on by things like strobe lights or fluorescent lights.  Apparently, you can develop this as an adolescent.  Caroline may not have this at all, but I think it is worth looking into.

We have another IEP meeting on Wednesday which will include her teachers, to bring them all on board with the new plan.  Hopefully all will cooperate and get her work to her as needed.

The relief in this household now that all is set to keep her home is palpable.  Everyone can relax finally.  Thank you Lord for such graciousness from the school and the IEP team.

Bringing Her Home, For Now

We have made the decision to bring Caroline home and either have the school provide home based tutoring or to just outright homeschool her.  She is very depressed and frustrated that she can't even do more than an hour at school before the room starts spinning and she gets a horrible migraine.  We are frustrated and I feel my stress level going from moderate to severe.  This pattern is helping no one.

Today we have an emergency IEP meeting with the IEP staff and me, my husband and Caroline to discuss what home based instruction would look like.  We have heard some mixed things about the success of home based tutoring, mainly that not every tutor is as dedicated to ensuring their student is getting all of their work from the teachers and being consistent about interfacing with the school and the student.  Maybe we will give it until the end of the quarter and decide if it is working or if we need to just withdraw her and homeschool on our own.

I must say again that the Special Ed head is AMAZING and so dedicated to Caroline and to finding solutions.  She even wrote her a card reminding her that God is working all of this out somehow for her good and citing Romans 8:28-29.  How could we ask for a better IEP team?? But even with such a blessing, Caroline just needs to come home for now until we determine how to treat her photosensitivity to fluorescent lights.  Her grades have really slipped too and now lacrosse may be in jeopardy for the spr9ing season.

She decided not to go on our church youth retreat this weekend,  I think out of fear of rejection more than anything.  She is so gun shy concerning relationships with other teens, and who can blame her?

One day at a time, right?  I feel so much relief at the thought of not worrying about that daily phone call from school, but homeschooling will present its own challenges too.

Heartache

You know that feeling when you are just so sad for your child because they can't function in  the "normal" world?  Or when the stresses of taking care of them combined with all the other stresses of life just get to you and feel so heavy?  Today is one of those days.

The special glasses we got her made the scrolling vision worse, not better.  She had to leave school early again.  I don't think she has spent one full day at school since school started back up after break.  She needs an education.  She needs consistency.  She needs to go through a day without a migraine.  I need days without the dreaded phone call.  Just sad today.  And frustrated.  And worried.  And discouraged.

Tag, You're It!

I don't know why I hadn't thought of this previously.  In light of the fact that I am literally at Caroline's high school on a near daily basis either picking her up because of migraines, or dropping her off late because of migraines or whatever (lately it is a stubborn virus giving her bronchitis and sinusitis), I have had almost no unbroken time to myself to get my own stuff done at home: laundry, filing, paperwork, or even working out.  Since I have a full partner in my husband, I am going to ask him to give me one day a week "off," where he is the one to deal with her and the school.  He will get the phone calls or texts, and I get a full day to myself.  After all, I too have a full-time job running this household.  I may not get paid (wish I did!) but I need time to get it all done.   Single parents who work full-time have no option but to leave work if their child is sick and needs them.

And on this note, I am seriously going to look at the option of having her do the public online high school next year.  She is home so much and her education has been quite interrupted.  She could still play on the lacrosse team, and she would have the accountability of having teachers to whom she would have to turn in work on a daily and weekly basis.  I spend an awful lot of time driving to and from the school as it is.  Maybe going to school isn't the best option for her or for me.  It hasn't been the source of friends for her that she thought it would be.  Her source of friends has been outside of the school.  We need to pray about this, obviously.

Of course this would mean I would be home all day with her.  So I wouldn't really have time to myself.  But I don't now either.  Maybe I won't until she goes to college.  And even then we know we will be "on call."  This is what it is to have a special needs kid.  No real breaks.  But God has used her to humble me.  I needed humbling.  And compassion for people who don't have it all together, like me.

Sick

So the season of colds, flu, strep begins.  Can I just say yuck? Missing school.  More make up work.  Sigh. Just when I think we are getting back on the bandwagon!

Survived the Holidays, and Then Some

This new friendship between Caroline and this girl has really blossomed over the break.  I just continue to pray that nothing happens to spoil this new relationship.  She has been burned a lot.

The kids go back to school on Monday.  I am thankful and sad at the same time.  The break has been good, from Christmas Day on.  I think everyone kind of relaxed after Christmas.  My husband and I enjoyed a night away on New Year's to celebrate our 20th anniversary, which was back in June but which we didn't have time to celebrate because of the move.  Thankfully Caroline is stable so we could go.

So I pray that your New Year will bring peace for your family, and hope, and some small victories.

Fondly, Megan