It's ONLY Been A Year!!

Blogging.

I have been extremely horrible at it. I mean, when it’s been almost a year since my last post, then I know that I am a bad blogger!!

I am now going to attempt up to do an update. Phew! 2014 and then some!

We started 2014 getting into the groove of Stella’s program. Some days were better then others, but on average we rocked out a good full 3 hours and then another 2 or so hours on and off of doing other things.

We enjoyed our first Easter in our new house! This was Olivia’s first year where she knew the Easter Bunny was not real (yet she still believes in Santa…..??), so she had fun helping us hide chocolates for Sophie and Stella to find. She also had fun pretending to believe.

Summer 2014 was full of visits from my family! In June, my sister, brother in law and nieces came to visit, and then in August my parents came to visit.

All the cousins!

My parents with Olivia. Olivia insisted I buy her those purple glasses. She spent all day pretending she needed to wear glasses. Lol.

2014 was a year of small, yet big improvements in Stella. 

She began saying more words and putting two words together.

Her stamina has increased. She can walk longer distances and has started running, as in sprinintg and then going back to walking…..or running and sliding on the ground on to her belly.  

She likes to do this in the mall.  Her sister Sophie taught her.

It’s not so bad when the mall is empty, but when it is busy, then it gets a tad……embarrassing.  “Sorry sir, sorry you almost stepped on my kid because she decided now was a good time to run and slide.” (insert red face here)

When hanging on the brachiation ladder (Monkey bars), she can hold for 30 seconds!! 30 freakin seconds! That is hard! But this also means she is now strong enough to be able to move into brachiating (swinging across the monkey bars), with help.

hanging with Daddy.

Taking a break on our walk.

Hanging on the monkey bars at the park last June.

Now, she is not always happy and eager to do her physical program. On days like those, I try to make it fun or I bribe with Dora (works most times), or I don’t push it and just “go with the flow”.  But on average, she is rocking her physical program.

How do I know what we are doing is helping? (Aside from in my gut “just knowing”?)

When Stella started preschoool, she was assessed by a physical therapist and an occupational therapist.  Stella is on par with her peers physically. Of course, they go based on her stature, but even based on her stature, she does NOT need any PT!  She can climb, run, jump….all on par! She will not be needing any help in this area!! 

The Occupational Therapist that assessed her was impressed with what she could do also. Though she will need some OT at school, it is encoourgaing to be surprising therapists. 

Those two examples are proof to me that we as a family, are on the right path with going a tad alternative when it come to therapy for Stella! All her hard work, day in and day out is paying off.

2014 was a year of small improvements in Stella's health.  We are slowly getting on the correct path for her when it comes to vitamins and supplements.  Stella still did get sick quite a lot last year. Lots of colds! But when she did get a cold, it did NOT go into her chest like it used to! So that is huge! We were not able to stay off of antibiotics though. In June Stella got a sinus infection and then again she was sick all of November and most of December.  She just couldn’t shake a cold and then sure enough it went into her sinuses and it just took very, very long to clear up.  Her immune system is still a work in progress.

In September, Olivia started Grade 4!!!!! WHAT????  Sophie started Kindergarten!!!!!! and Stella started preschool!!!! Aggghhhh!! My babies are growing up!! Which means I am getting older!! Make it stop!!

In December we spent Christmas in MEXICO!! It was awesome!! We hope to do that again in 2016!

Ahhhh, how I miss this still!

The beautiful house we rented in Playa Del Carmen!

But before we went to Mexico, Mickey and I met with Dr. Erica Peirson via Skype. Dr. Peirson works at the Down Syndrome Treatment Centre of Orgeon.  We met with her to address Stella’s thyroid.  She is a fabulous doctor! Very knowledgeable and after talking for 3 hours to her, we were hopeful that Stella’s thyroid being treated would help her immune system and everything else in her body, function better.

Well, since Stella started on Desiccated Thyroid, I have noticed the following.

  

Her sleep almost immediately improved! I am sure she still is not sleeping as good as she could, but she no longer gets up 2 x in the night. 

Her energy is noticeable. I mean, she has always had good energy, but near the end of the day she always seemed to be really tired. Lately she has lots of energy still in the late afternoon/early evening.  

Her appetie has improved. This has seemed to have tapered off, but the first 3 weeks I definitely noticed an increase in appetite! 

She used to have quite bumpy skin on the back side of her upper arms. This has noticeably improved. The bumps are almost non exsistent.

Her cheeks are now a nice pink. They don’t seem as red as they used to be.

Her hands and feet are always warm now too! I haven’t checked her body temperatture, but I bet if I did it would no longer be at 96, but at normal 97!  

Hopefully as she is on desiccated thyroid longer we will start to see an improvement in her immune system.  The rest of this winter will be telling that is for sure!  I am VERY hopeful and feeling really great about the choices we have been making for Stella!

One more huge change we have embarked on is POTTY TRAINING!! This time around I decided to use an actual potty training method.  The one Mickey and I decided on was the Bridget Murphy Method (you can read about it here).  Day 1 of the method was long and seemed a tad crazy insane, but Stella was a trouper and pulled through.  We are now 4 weeks past the initial 4 day method. Stella still has many, many, many (sigh) accidents. BUT, at least twice a day she will look at me say “poop” and when I put her on the toilet she will pee in the toilet! She has yet to do a “duce” though. I mean Day 1 she did, but she hasn’t since (sob). 

Part of me is REALLY regretting deciding to potty train, cause now we can’t go back! Putting her back in diapers now would just be confusing I think so now we must trudge forward and be hopefully that something in her little brain will click and she will fully get the whole idea of peeing on the toilet.

Stella is a little warrior. She is doing so much everyday.  For the most part she is happy and eager to learn and to exercise and to spend time with me.  Most days I feel like she is rocking life and making great strides at reaching her potential. 

Then there are the hard days.  The days when nothing I do seems to work. Where she’d rather lie on the couch and chew on toys all day.   Sometimes it’s very hard to see a typical kid learn something so fast and with such ease.  Those days suck.

Stella has to work, and work HARD to achieve what that typical kid can do with his/her eyes closed.  Those days it just feels like this journey, this road, is a HUGE mountain.  One that we are struggling to climb up.

We are fighting against the wind, the rain, the snow.  Fighting so hard, yet seem to be moving so slow or sometimes not moving at all.  

Those days I wish Stella didn’t have DS. Those days I wish learning to speak, learning to engage with other kids her age, was easier for her.  Those days I feel pissed off that she has to work so hard. Those days life seems terribly unfair.  

Those days I feel like I am just not doing enough, that I need to do more. I know if I spent MORE time with Stella on her program, that I would see MORE improvement.  But for me personally I need to be realistic with what I am able to handle as a mom. I don’t have eight hours a day to focus just soley on Stella.

So for now, we do what we can. 

Every month I seem to go through this inner emotional turmoil. 

Every single month, at some point I have a pity party and I feel overwhelmed and sad and that nothing we are doing is helping.  

And you know what?

Every time I feel that way, Stella seems to do something to show me that “hey mom, chill. I GOT THIS!”.  

A new word, drawing a circle, going pee on the toilet, asking for help.

You are our warrior Stella. Thank you for reminding me that you are an individual, that all the work we are doing IS paying off and that you can achieve anything!!!