A Fork In The Road

I rarely blog anymore. This was not my intention when I first decided to blog. My intention was weekly posts about our life! Tons of pictures and countless updates.

For awhile, I did just that, and it was good. I met (online), other fellow bloggers and we connected as we could relate to each other’s journeys.  I put all my fears, frustrations and triumphs into these posts and if felt good to be encouraged and recognized and supported.

Then life changed.  We found the Institutes for the Achievement of Human Potential and my whole thought process changed.  Stella had a brain injury and there were things we could do to help her brain!! Fabulous!

Then life got really REALLY busy! Instead of spending my evenings blogging and sipping on coffee while the TV played in the background, I found myself writing in Stella’s food/program journal, making flashcard and homemade books and reading about supplements (TNI - Targeted Nutritional Intervention, to be exact).

I did manage to do a few update posts about Stella’s progress. Other then that though, I kind of stopped blogging.  I was still journaling (a bit), but I always found myself journaling when I was sad about our challenges, or about what Stella was still not doing. I never truly felt 100% comfortable with sharing these thoughts as I felt deep down these were very personal and not 100% mine to share.

 What if, 10 years from now, Stella stumbles upon my blog? How would she feel reading my blog? Will she feel exposed, belittled? Will she feel like something is wrong with her and that her being different is a bad thing?

I NEVER want any of my daughters to feel that way! Realizing that one day, my girls may read my blog has made me really rethink, just what I am willing to share. I actually feel like I have already shared a tad too much.

As a parent of a child with T21, I have been sharing on my blog my experiences and my perceptions of what it is to have a disability. However, this is not and will not be my daughters view. 

Of all the positive things I share about Stella, I worry that the negatives will be remembered more.  Disability has such a negative stigma attched to it already.  Am I feeding into that negativity? Am I doing more harm then good?

So I stand here at a fork in the road.  Do I continue to blog? If I do, what exactly will I be blogging about? I don’t feel like Stella’s (or her sisters') journey in life is mine to tell anymore.  

I love you more then mere words can ever express.

To My Daughter

Hi Stella,

It's mom. Today is your birthday. You are five years old. I am beyond delighted at the fabulous little girl you have become!

You have a zest for life that is contagious. Those around you can't help but smile and feel your positive energy when you enter a room.

You have mastered listening to your body. Diapers are a thing of the past and accidents are few and far between.

Your physical skills impress me every day.  Hanging and swinging across the monkey bars like a boss!!  Those two skills are helping your fine motor skills and the fact that you can now use scissors efficiently makes my heart smile.

Your voice, your words, your sentences. What a long way you have come in one year.  When you tell me "no, stop please" or "no, go away please", it makes me happy that you are able to express yourself, plus your manners are impeccable! You are working so hard to learn to talk clearly and I can't wait to hear more of your thoughts over the next year.

I will always remember the day you were born like it was mere moments ago.  Your birth, Sophie's birth and Olivia's birth were each so unique and life altering.

Olivia was our first. She made us parents.

Sophie was our rainbow baby. She was the ray of light after the storm.

Stella, you completed our family.

You are our little warrior.

Happy Birthday my fair skinned, blue eyed little girl.

Antibiotics - The Double Edged Sword

Antibiotics. Antibiotics or antibacterials are a type of antimicrobial used in the treatment and prevention of bacterial infection. (thank you Wikipedia).

I love antibiotics.

I hate antibiotics.

Especially when it comes to Stella. 

She was doing so well this winter! She was cold free for 3 months.

January to March. 

Those three months she usually is sick almost every month. But not this year!!! 

So what did I do? 

I jinxed it.  

Yup. Instead of keeping my yap shut, I spoke OUT LOUD to my hubby about how Stella has been “sick free” all winter!! I swear the minute I said those words, I heard Stella sneeze….and it’s gone downhill since then.

A cold. A cold I can handle. But lately with Stella her colds seem to turn into a sinus infection, and this cold was no different.  After a week her cold seemed to be getting worse instead of better. Green sometimes brown nasty snot, a nose so stuffy and yet when she blew her nose it seemed painful to do.

Crap.

A sinus infection, for SURE a sinus infection. 

I couldn't let the poor child suffer through a sinus infection! Those things suck! I took her to the doctor and he gave her antibiotics.

The next day she was remarkably better! Yay Antibiotics!  But as wonderful as it was that she was getting better, I knew that all her “good” gut bacteria was being killed off too. Which meant Stella’s immune system would be even weaker.  

A few days after she was done her antibiotics….. BAM! She seemed sick AGAIN!!!! The last time ( in December) it seemed that her sinus infection was back or perhaps never really went away). But this time, she seemed even worse! She had a fever, her tonsils sounded swollen, her nose was stuffy and she seemed to also have a cough.

SIGH… SOB…. more sighing.

She is pumped full of supplements. She is given vitamins she is lacking, minerals she needs more of, probiotics to keep the healthy bacteria in her gut, and thyroid meds that she needs. Slowly all of these things seem to be working. She is getting sick less often. BUT when she does get sick, boy does she ever get sick!!

I can’t f*&#ing win.

Sigh.

Off to the doctor’s office we went on Monday. She got her throat swabbed and then we had to go to the hospital. 

Yeah, Stella was not cooperating and would not pee on the toilet for me. So we had to go the hospital so they could put a catheter in so a pee sample could be obtained. The doctor wanted to rule out a bladder infection.  Needless to say that event was traumatic, for her and for me. But she was a courageous little girl, and the hubby was there to help as well which was definitely what i needed. He is my rock. (love you babe!)

Ahem… anyway..

Yesterday she was clearly no better, even worse to be exact. To be honest I was terrified. You see at the doctors office on Monday, the doctor ordered up a blood requisition. He wanted to get a complete blood count (CBC) of her blood. He had noticed a slight rash on her stomach and after seeing that he told me he wanted to get her platelets looked at.  Why would he want to look at her platelets? He’s checking, just to be safe, for signs of leukaemia. He never said that to me, but I knew that was what he was doing.

So when Stella woke up yesterday and was clearly no better, I was internally freaking out. As much as I did not want to have to take my child to get her blood taken (she had just had her blood taken for her thyroid a mere 2 months earlier), I knew I HAD to. Off we went to the lab. I told Stella where we were going and why and let me tell you she was not happy about it. She kept saying “no!” and crying. When we got there, she kept saying she had to poop. She’d fuss, look at me and say “poop”. So off we’d go to the bathroom, i’d sit her on the toilet, and she’d say “all done”. We did that about 4 times.  

My poor sick baby!

Poor kid. 

You know what though? She is a brave little girl. When it came time to get her blood drawn, she sat still, put her arm out, and fussed a little bit. She kept her arm still and they found a vein the first time. What a trooper she was!  As we left she kept pointing to her arm and saying “needle”. An elderly gentleman stopped me and asked if he could give Stella some money as he thought she was so brave. I thought that was so sweet, so of course I said yes!

Stella took the money and said “gank you” (Thank you).

Fast forward to today and Stella is FINALLY on the mend. Seems she has strep throat, as does her 6 year old sister!! 

Yup, you guessed it, BACK on antibiotics! SOB!

However, Stella is noticeably better today which is wonderful to see. Now to keep her healthy once she is done the antibiotics.

Oh and her blood test results came back and she is low in iron. Her platelets are good.

I am relieved.

Cancer hits just way too close to home.  I am painfully aware of it.

Stella has Trisomy 21. This puts her at a higher risk of getting leukaemia.  

Sigh.

Being a mom is tough. There is so much to worry about isn’t there?

Thankfully today is a good day. We are turning the corner and Stella is on the mend.

This was taken yesterday. Today she was 100 times better. 

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!!!