Tuesday, June 24, 2014

Let Us Hold On, Just a Little While

15q24 is a trickery little monster.  It's not just speech or sounds that become lost, but certain skills can slowly fade away. Something as simple as grabbing the spoon with food on it and feeding herself, is something she hasn't done in a long time.  No matter how many times I ask, no matter how I ask, she won't take the spoon from me.  It's a little disheartening, but I feel with time, she could gain that skill back.  I know she has the physical capability to grab the spoon and put it in her mouth, but something in her brain is not allowing her to.

Tonight, dinner consisted of Mila chowing down on a cheese quesadilla and fruit, while Michael and I sat at the table chatting about random things.  Mila hasn't eaten real fruit in FOREVER...so for her to go for the first bite was a big deal!  Such a big deal that I prompted a "high five."  I usually do hand-over-hand guidance for most things, prior to asking her to doing them independently.  So, I guided her through "high-five" a few times before asking her to do it.  I held my hand up, asked her for a high five...she looked at my hand, looked at me...and ever so gently touched her hand with mine.  Michael and I clapped and cheered so loud!  Mila's excitement level grew with her head bopping, lots of squeals, but you could tell she had no clue why we were so ecstatic. Hahaha!  I thought for sure we had scared her out of any more "high fives," but my girl gave me a couple more as soon as I asked for them!

It's these little moments that make us so proud to be her parents.  We cheer loud and obnoxiously because something as simple as a "high five" is a big milestone for us.  We scream and clap like hyenas because we don't know when we'll get to again.  These moments are special and we'll hold on to them as long as we can.

Look who's turning two next month....

Wednesday, June 11, 2014

Serenity Sucks

We have literally packed/unpacked five times in the last month, whether to go on a trip or move.  As much as I like to travel, we are on a much needed break from doing any packing...and the next time we move, it will be to our permanent residence AND we will pay someone to move our things!  I definitely have to praise Mila...she is the BEST kid to travel or move with.  Even though I notice changes in her abilities and skills when were constantly out of routine, she never fusses!  She's a super chill girl.  For that, I am so grateful.

So, here we are, back in our groove.  All family who have visited are gone, no major trips planned, and we're resuming our schedule.  The schedule that now consists of therapy 4x a week and random doctor visits.  Mila recently qualified for Speech water therapy.  Yes, speech therapy in a 90 degree salt water pool, 30 weeks out of the year!!  She also gets an office session once a week too. Unfortunately we had to "break up" with our in home Speech therapist, but after reading the history of Katie Blehm and her reputation of success with speech water therapy, I had to give it a chance.  They incorporate so many motivating factors for Mila.  First, being water.  Second, being iPads in the pool.  I mean, seriously.  Who wouldn't love a 90 degree pool with iPads!
They have 4-6 assistants in the pool each session so there is plenty of attention on Mila.
I have no idea when Mila will start to respond to Speech Therapy, but Mila's doing really well with her standing, cruising, and even walking with her walker.  Even if she isn't consistent with these functions, she has her moments of surprise.  Such as, walking with her walker by herself for a full minute!  Wish I knew how to post the video.  It's awesome to watch.  She's awesome.  I'm so glad she continues to progress no matter how big or small.

Now that we're back at home, doing our thing, monotony sets in pretty fast for me.  As much as I love being with Mila, and as hard as I try to be patient with her milestones, it becomes exhausting.  I'm with her all the time so it's hard for me to notice changes in her.  I have to continually pray for patience...literally all day, everyday.  I have moments when I want to scream.  I have sad moments of wishing she would walk or talk.  Then I'm humbled by a mom we meet who's teenage son with a syndrome unknown has never said "mama."  Talk about a gut punch and tears.  I can't imagine.

She will get to start pre school in January which I'm really excited about.  Sometimes I feel as if I'm not enough for Mila.  I really think she would thrive better if she could spend time with others and I could be a better mom if I was involved in other things outside of the home.  It seems like I'm always pushing back "my" start date.  My start date of work, consistency, socialization.  I'm constantly pouring myself into Mila and pushing my needs to the back burner.  Thats why serenity sucks.  As we resume our normal routine, it means, I go back to being mommy and caretaker.  I would like to be less care taker and more mom.  I need to be a great mom...not just a good mom.  So until January rolls around, I'll continue to beg & pray for patience. You can join me if you want.  I need it.  Mila and Michael need it.