Big Day

Three notable things today.

FIRST THING
The suction machine finally arrived!  Niko has been stuffed up for over a month now.  Her sleep has been totally interrupted.  She wakes up choking and screaming.  She sounds phlegmy and rattling all day.  The bulb syringe is a shameful joke.  The nosefrida did close to nothing.  The other I-Cell families recommended a suction machine.  In fact it seems like most of the families use them.

Obtaining a machine has been a struggle.  Our insurance plan doesn't cover any equipment.  We were denied for everything that doctors have recommended thus far.  I've talked with social workers, insurance agents, doctors, specialists, etc.  And then suddenly today, my doorbell rang and a friendly man delivered the machine.  I have a sinking suspicion that I'll receive a fat bill in the mail for this.  But I'll deal with that when it happens.

I'm pissed off that this took so long to arrive.  And I'm steaming mad that Niko has suffered unnecessarily for over a month.  But am I glad that there is still a need for it?  Weirdly so.

The model I received is Roscoe 50006.

It came in this travel bag.

This is the pump.  It's really simple - just an on/off switch and a level dial.  The rep told me to leave it at high.   They also gave me a replacement tank.

These are the little sucker tubes called… "Little Suckers".  The rep mentioned that they also have nasal tubes made specifically for babies with a soft bendy plug at the end that creates a seal at the nostril.  But he didn't bring any because my doctor didn't prescribe them.  hhhmmmmmpppppp.   

I gave this machine a try and it didn't get anything out of her nose.  Niko's congestion sounds like it's deep in the back where the back of nose and throat meet.  I'll give this another try tomorrow, or perhaps tonight when she wakes up screaming.

SECOND THING
Niko rolled up today.  For real!  I left her on her back on the floor mat and then looked away from her.  When I turned back around a few minutes later she was on her tummy.  She didn't even complain, as she usually does when I place her on my tummy.  This was her very first bona fied success at rolling over and I missed it.  She looked stunned.  The look of "What the hell just happened?  And how did I get here?" was clearly on her face.  I'm so proud.  The passing of her first birthday must have forced her to face her challenges, set goals for herself and strive to meet her goal dates.

THIRD THING
We went for her first PT and OT session at CCS (California Children Services).  She's been getting PT and OT at the house (through another program) but this was at the CCS office.  She met a new team of therapists and seemed to like them.  They also have a different style from her other therapists and she learns better when she's exposed to new environments.

Somehow now that she's one year old, she seems different.  More present.  More engaged.  More cognisant.  More mature.  She acknowledges engagement with people right away.  Her face lights up.  She's just different.    

I caught this on video today.  I know that there are countless videos on YouTube of parents making ridiculous noises in order to get their babies to laugh.  But this is hysterically fun.  And I dare you not to smile.

Swing

I put Niko in a playground swing for the first time today.  She freaked out and panicked about being unsupported until I propped her in there nice and tight with my jacket.  Then she seemed to enjoy it.  She's the sweetest little strawberry.  I could just bite her.  What is it with parents?  We all want to devour our kids.

Birthday Girl

Today is Niko's 1st birthday.  I can't believe she's one already.  This day is bittersweet.  It's impossible not to think of the milestones normally reached by the end of a baby's first year; sitting, crawling, eating, walking, babbling, roaming around, exploring, etc.  But of course I can't focus on these things.  And I usually don't.  But the first birthday is a big landmark and a big reminder.  Niko has not even had her first bite of solid food yet.

But she has made some impressive progress.
She now has a somewhat regular sleep routine.  She takes two naps a day, at around 10:30am and 2:30pm.  Her final bedtime is around 7pm.
I can now place her in the bassinet to sleep and walk away.  She can fall asleep on her own.  This is HUGE. 
She also has a feeding routine.  She gets 4oz of formula every two hours during the day, 6 feedings total.
On a few occasaions she was able to hold on to a wedge of fruit and suck on it for juice.  The fruits she can hold so far are apples and pears. And I have offered strawberries and watermelons to her (I have to hold these since they break apart easily, and she doesn't like the mesh bags).  This girl likes fruit.  
She can reach out and touch the face of the person holding her, which is a sweet way to connect with her.
And she can laugh out loud and recognize humor like a 'real' kid.  I say real because I sometimes forget to treat her like a real baby.  

Here is a video a friend shot today.  We sang happy birthday to Niko with a mini cake. She didn't eat it and looked around with a pretty puzzled look on her face.

Happy birthday my love!

Warm Weather

I have nothing to blab about… except maybe two things.

I love warm weather.

I love Niko in shorts.

And Niko has crazy hair.

Ok that was three things.  

Birthday boys

Today is the birthday of two super cute I-Cell boys.

Mikey turns 7 today!  He lives in Florida.  He (and his sister, who also had I-Cell and passed just before her 5th birthday) are two of the most capable I-Cell kids I've seen.  I know that all these kids have their own very unique capabilities and strengths, not to mention big personalities.  But Mikey and his sister reached some serious "regular kids" milestones such as crawling, talking and displaying major and minor dexterity.  



Mikey's birthday cake.

I love this video.  This shows how fearless Mikey is.

This is Mart from Holland.  He turns 3 today.  I have a super weak spot for him because I think he looks a lot like my Niko.  And he always has a mischievous look on his face. 

Feeding Therapy

We do feeding therapy once a month.  Nikola's occupational therapist is wonderful.  She is helping develop Niko's facial muscle tones.  Niko's face is really firm, but underneath all that firmess is weakness.  We are hoping to help her loosen the tightness and at the same time tone her face.  Loosening up her face, developing muscle tone and pushing back her gag reflex will all contribute to the success of her eating solid foods.  So I'm definitely willing to stick to this program.  It's really important to me that Niko gets to enjoy food.  I think it's one of the greatest pleasures in life.  How can I plan a trip to Italy for her that doesn't involve gelato?

Her therapist gave us a tray for her bumpo seat, which is great for Niko to play and reach for things.  She also gave us a couple of cool tools.  One is the NUK brush.  I'm to brush the inside of Niko's cheeks with this to get her used to having objects in her mouth.  This also builds strength.

The second is a special needs feeding spoon.  This is basically the smallest, most shallow spoon you've ever seen.  It's called an E-Z spoon.  This spoon is super flexible and soft.  The tip is very small and flat so it's less likely to cause the gag reflex.

Here are the instructions for Niko's facial massages.  We are doing #2 and #4.  She will not tolerate the other massages.  I have to do this about 5 times a day.  Niko hates being fussed with but I'll try.

On the subject of headwear...

I don't know where to store this gem of a photo so why not here? When I saw this photo I knew it had to stay with me always.

Where did I find this? Oh yes, Amazon! It was via their recommendation tool. You know, "if you buy this, you should also buy this!"  However since I order mostly diapers on Amazon, it's a mystery what could have possibly summoned the BETTY DAIN HEADWEAR PROTECTOR HOOD, 12PK, ASSORTED COLORS.

"Protect hair and makeup while you dress," it says.

Oh Amazon you know me so well. My hair is 2.5 seconds from dreading and my lips are crusted with residual toothpaste. If I hastily yank a sweater over my head and subsequently wipe off the aforementioned details I may lose my current and only form of income: receiving spare change from strangers on the streets.