Tuesday, July 31, 2018

On Steroids (literally)

Well y'all are all caught up to speed on our family.  We had a great summer.  Shad has already started his home school curriculum.  He is starting 10th grade a year early.  He plans on doing dual enrollment when he finishes this year's work.  He probably will finish by January.  He uses  Acellus..  It's computer based and much more like college classes are today.  The ACE curriculum that his school used and we did for a few years was very repetitive.  He'd have 50 long division problems to do a day and 50 sentences to diagram.  It definitely gave him and Steve a good base but we like this curriculum better.  Plus there is absolutely no way he can be tempted to cheat LOL  You don't move on until you've passed each test.  We monitor computer use like hawks and it's set up so he can only go on the one website (he can thank his older brother for that lol at least we're using that college education for something!)  It makes life easy for me!

In two weeks Steve will be back to college for his FINAL semester!  He's graduating in December, 27 years after his dad graduated also in December 1991.  Time flies!   He's had a great college experience and is probably going to start in January on his Master's.

Sam Sarah and Selah are getting back into more therapies, the summer is almost over!

Time goes so quickly-I often feel like I'm on a roller coaster hanging on for dear life as the days, months and years speed by.  Do you feel like that too?  I can get very melancholy about it if I'm not careful.  Sometimes it hurts to look back at old pictures and videos knowing those days are gone for good.  When I was younger, probably up until the time I had my first child, I was always looking ahead, excited about the future.  After becoming a mom, I wanted to hold onto every stage and treasure it.   But I had a little one who was pushing forward...and then a bunch of little ones....

Now I have to admit the future scares me, realizing there are more days behind me than are ahead of me. Having the responsibility of three children who will need life long care, possibly long after I'm gone is quite sobering.  We have everything in place for them and all legal things done to ensure their future as much as we possibly can but it's still scary.

See I told you I can get melancholy!

So an update on my health.....did I tell y'all they gave me antibiotics AND STEROIDS????  Well I'm not much of a medicine taker, I don't even like to take much Advil and I'll usually just grin and bear it so these steroids are on pretty virgin soil!  Lord am I flying HIGH!!!  I didn't sleep a wink last night and wasn't even sleepy.  This morning I took a hot shower and made myself sleep for about 3 hours but I woke up wide awake!  I've been up all day, cooking and cleaning feeling great, just a little cough, it's 10 pm and I am completely wide awake.  If only I could live on steroids!  That's what I need in my life LOL  Actually usually I'm a bit like a person on steroids anyhow, maybe it's a good thing I can only take it when I'm sick!!!!  I have to say I don't think I've ever gotten so sick so fast!  It was rough and I'm grateful for meds!  But these steroids are the BOMB!  I LOVE energy!  I have 3 more days on it I plan on deep cleaning the house LOL!!!!!

Tomorrow Sam has his appointment with orthopedics to check his tight hamstrings and decide if he has a little scoliosis.  Sam has been diagnosed with a little CP, mainly in his wrists and ankles.  We were lucky it was not worse.  This new problem is worrisome because we don't want him to start having trouble walking!  As it is now he is walking with his knees bent and booty sticking out.  It happened so quickly that we really just noticed it.  That's scary!  We've been racking our minds to remember when we first noticed it and it seems we noticed it on our vacation.  Surely he was doing it before then but I can't remember.  I think it registered but I thought he was just being overly cautious as he walked in new areas.  He's always assumed a bent postilion in unfamiliar areas, but now he is always in that position and his leg doesn't seem to want to flex.  So I'm worried about what we will find out with him.  Luckily we are going to the same doctor who sees Selah (and who did both of her hip operations)  it's easier when you have a good relationship with a specialist!

Then Thursday we have horse back riding in the morning  and Occupational Therapy in the afternoon.  Selah is getting her new wheelchair on Monday, Sarah has horse back riding.  Then Tuesday Selah has an appointment in Orlando with a Nutritionist.  I don't know if you can tell but she's put on a bit of weight and had a huge growth spurt.  She is wearing women's sizes now!  We want to make sure her calorie intake is not too high  Her Gastro was a little concerned.  Personally I love to see the girls grow but we want her to stay healthy.  Then Wednesday Sam and Sarah have an appointment in Orlando with a geneticist.  They've had DNA testing but neither of them have any of the DNA markers associated with Peter's Anomaly.  The Geneticist feels there may be another marker out there so they are going to be tested again with a new kind of test.  I don't' know much about it but I'm sure I'll learn more next week.   NOW you know why I'm loving the Steroid so much!  My life doesn't slow down!  It's a crazy life.  So I'll keep rolling:)


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