Saturday, February 2, 2013


I haven't blogged in a while.  Mainly because I'm recovering from brain surgery.  This seems so obvious.  I'm exhausted.  Typing is something my brain is still trying to re figure out.  I have headaches alot.  I can only sit up for so long before my neck gets so tired, and for quite a while there the dizziness and nausea would kick in something fierce if I sat much.
I'm officially in PT now.  She is having me go 3 times a week.  It's not fun, but not horrible.  I really like my therapist and that helps.  Most of the work right now she does while I just lay there.  She's starting to have me do a few basic stretches by myself and we always end with this amazing heat machine that I'm in love with!  I've been wanting heat since my surgery.  I'm still not allowed on my neck or head but at this point my shoulders have been very nice. 
My incision is looking really good.  I'm still having quite a bit of discomfort, a whole lot of tightness, and sleep is a huge struggle.  I have my next recheck with my surgeon this next week.  Hoping he begins to adjust some of my restrictions.  I'm still currently only allowed to lift 4 lbs.  That really covers what's going on with me physically.  For me currently all Mito testing is on hold until I'm farther into my recovery.

The 2nd not at all obvious reason to not blog much lately is a hateful comment that I received and wasn't able to respond to.  I have NOT brought this on myself.  I can not give myself a Chiari Malformation OR Mito.  These are not something that you can just go and get for yourself.  You can't do something to cause them.  You can't "catch" them from a sick person.  You can't will them to come into your life.  I did NOT bring this on myself.  I did NOT ask for this for myself.  I sure as HELL didn't ask for this for my son.  I didn't ask to suffer.  I'm hating every fucking day of this and how it makes me feel.  I would do it over and over though if that meant that I could take it from my son.  This is hell on earth and until you have lived it you have NO fucking clue and you have NO right to talk.  Children and adults are dying and NOT one single one of them has done anything wrong.  They haven't asked for this.  Neither have their parents, or siblings, of families, or friends.  This is HELL on earth and this is also our HEAVEN on earth.  The torture that my family and so many other families go thru is HELL.  It is unbearable, unimaginable, and not able to understood, only felt by those living it.  It is also our heaven on earth because the strength we learn and the blessings that we endure and the HERO's and friends that we meet along this journey are amazing.  It is also unimaginable and not able to understand, but truly to be felt deep down in our hearts and souls.  We are all connected in these journeys, as separate as they may be we are all connected by what we live each day, in the Chiari community and in the Mito community.

My family.

Emily ~ Emily is at such a tough age.  She's stretching her boundaries and pushing her independence.  She's exploring her power, and seeing where she can dig in and refuse to give.  She's dealing with some very typical pre-teen issues.  There's been missing work, rushed work, forgotten assignments, skipped work, missed chores, arguing, eye rolls, hair flips, and TEARS.  oh the tears.  Love the pre-teen emotions.  From what we hear from the other parents and the teachers this is a common theme thru a large group of the 6th graders this year.  The last year of elementary school.  How time flies.  She's staying busy with school, violin, choir, and babysitting.  She's still in her school orchestra as well as the advance 6th grade orchestra.  She's still active in choir and loving music as much as ever.  She babysits at least once a week, sometimes twice.  Tonight is her first overnight babysitting (the parents are there).  It's her regular customer.  The youngest daughter is having a b-day sleepover and they have asked Emily to help with the overnight party.  It should be fun for Emily and definitely a bit of babysitting variety!

Jace ~ Jace is struggling in school.  The work is getting harder and he's really struggling to keep up.  It takes him alot more time to process the information, especially if it is written.  The math concepts have gotten more confusing and even reading them aloud now isn't proving to be enough for Jace.  We meet with his teacher this week, as his teacher is equally concerned.  Jace is doing well in speech right now, and is being alot more willing this year to spend some extra time focusing on his speech sounds.  They are definitely still a struggle for him, but at least he's trying this year.  When he's not in school he's home begging to be outdoors.  He doesn't care to much about the cold weather and still prefers to be outdoors as much as possible.  He's been outside almost all day today with a friend.

Benjamin ~ Ben is Ben.  I feel like that describes him perfectly to all that KNOW him and says nothing to those that don't.  Ben is set in his ways, as deep as always.  Life has to happen Ben's way, the same way, every time.  He's struggling with focusing in school and is constantly behind on his school work.  He refuses to try and rushes sloppily thru it all.  His teacher is lucky to even be able to read his work.  His teacher this year doesn't push Ben to do his best work and she allows him to skate by with almost nothing.  It hasn't been a great fit for Ben.  Socially Ben has made some great strides.  He has his best friend at school(for 2 yrs now), and even has a few other friends as well at school and in our neighborhood.  He still tends to parallel play alot, but will actually get involved and play as well.  His new favorite hobby is origami and paper airplanes.  He went thru an entire pack of computer paper in no time flat.  He's always looking for books at the library or grabbing an ipad to go to his favorite origami websites.  If he finds you on pinterest he'll hang over your shoulder looking for projects as you scroll.  He's also discovered that he has "lines on his belly" and loves watching his abs and is so proud of them.

Ariana ~ She's LOVING kindergarten.  She's reading simple books with minimal help and has advanced to the next book program in kindergarten.  Her writing has improved so much this year and she's even trying to sound out and write her own words and sentences.  She's the social butterfly, so always making friends and having fun.  She's loving her new haircut and is happy that she can still wear bows.  Sometimes I still look at her and almost panic that all her hair is gone.  After having long blonde hair to her bottom for so long this chin length style is a big change.  It fits her so well though.  Totally goes with her princess sass!  Her birthday is coming up on the 13th and she's super excited to be turning 6!  She loves that she's getting so big.  I think age is most important to her, way more than it's ever been for any of my other kids.  I'm guessing that's what happens when you have 3 older siblings and you are as strong and independent as Ari is.  She's by far my most stubborn as well, which can be interesting!  She's finding a love in music as well, and has to have it to sleep.  She loves to always have her toe nails and finger nails always painted, preferably in pink or purple!

Elias ~ My little man.  He's doing well and struggling all at the same time.  I know that doesn't make alot of sense.  He's running higher temps every day.  He's having pain to the point of grinding his teeth until given pain meds, but we can't find the source of the pain.  His keppra levels are still struggling to come up and that's WITH doing the meds thru his IV.  His finally back at a good point with his secretions.  His intestines are still not super happy with us but for now they are chugging along.  He's developing some new rashes.  His thrush is finally gone.  He's signing way more, and even on certain things he's consistently combining 2, sometimes even 3 signs together by himself!  He's using his polite words; thank you, please, sorry, help, excuse me.  He's beginning to label more things with sign as well!  He's loving his dress up set, basketball set, and bowling.  Jace and Eli love to bowl together.  They set up the pins and hold the ball and run at the pins falling over together knocking them all down.  This results in huge belly laughs from Eli.  Something we don't get often, but love so very much.  When Eli starts his big belly laughs everyone in the house tends to stop and come and watch.  It's mesmerizing.  It's normally his siblings who get them, when they play rough and silly with him.  It's my favorite time.  It's so normal.  So normal it's almost scary sometimes.  For those few moments they are simply siblings, on the same level.  There is nothing different about Eli.  Melts my heart. 
Eli's primary doc is passing time and keeping Eli stable until farther into my recovery.  Once I'm stronger the goal is to get Eli's big surgery done quickly.  Tonsils and adenoids removed, and tubes placed in his ears.  He really thinks this will make a big difference.  He seems a bit to optimistic, but my mommy heart is always guarded, history has shown that Eli's body doesn't always follow doctors hopes and plans.

Bob is well.  Busy as always.  Trying to keep up with all of life!
As most of you know we will be moving a block away.  14 months in this home.  There are some things we are sad to leave but because of health and home issues we have no options left.  We are staying in our neighborhood, school, all of that.  We were very lucky to find a home available right by us!  It is even larger than our current home and will allow the master bedroom and Eli's bedroom to be on the same floor.  This eliminate stairs for he and I!  It also has a working garage which is very much needed with Eli's wheelchair!

I would love to tell you that I will update soon, and that I promise to stay current and up to date with it all.  But currently I make no promises.  You can always find me on facebook which is updated often, especially with pics!  I will end with 1 of my favorite pics lately!  I was able to prop Eli one evening before bed for some super special mommy and baby cuddles! 

oh and one final thing to the lovely person leaving comments and saying cruel and completely inaccurate things on my blog...FUCK OFF!  oh and have a lovely afternoon!

1 comment:

Becky said...

Why would someone say something like that to you? That breaks my heart. NO ONE DESERVES what you are going through. I'm sorry someone was so insensitive as to suggest that.