Kiera is 6 Years Old Today!

I know I haven't updated the blog in a long time. Since my discovery of Facebook, it became easier to briefly post in that forum, and combined with going back to work, blogging fell by the wayside. That said, Kiera is 6 years old today. It is hard to believe that it has been 6 years since that day that changed our lives. Kiera is still trached and living with oxygen and a g-tube for feedings. She advances in many ways, and still struggles in others. Feeding by mouth  is still experimental...she tastes foods and makes messes but rarely swallows anything. Kiera's sign language is getting better, but we have depleted our repertoire of vocabulary and need to find other resources. Kiera still receives homebound education services from the public school, but is developmentally delayed, and we have her on a waitlist for the ASL Academy charter school. I would like to send her to school, but the charter school seems to be the most appropriate for her needs, and she is 4th down on the list. I think any of the regular public schools would overwhelm her, and frankly I have trouble figuring out the logistics of getting her there and keeping her safe. It is hard to see her peers and children younger than she head off to school, while she waits.

Life has been taking a toll on us these last few years, and I am holding on for an upswing. I cetainly hope it happens soon. In the meantime, we will just celebrate getting Kiera to the 6 year mark. It definitely took a lot of hard work and persistence.

Bronch done, now waiting for Airway Appointment...

So, Kiera's bronchoscopy wasn't as nice as it could have been. Plus, Kiera, is pretty ticked off about the whole thing so trach changes have become a bit more adventurous. She has a granuloma in her airway above the trach that needs to be surgically removed before with can look at decanulation. It looks like the ENT doc may not be able to get her in till late August! I am pretty dissappointed since we only have a small window when they will decanulate. (No decanulations happen during RSV season). Then I had the pleasure of the med frag case manager telling me, "You need to get on this. This is very unusual for a child to have their trach this long. None of the kids I work with have had theirs this long." etc, etc, etc...I paraphrase. Like I haven't been trying to get this done since April!? Like I don't realize Kiera's course is extreme!? Like I need someone pressuring me to get mor things done!? ^%@(%^$ Thanks for the input. Of course, what does she know...5 - 9 years seems to be a norm for some of the people I have met with airway issues.

Anyway, we're in limbo for a little while. Kiera's EEG was abnormal while sleeping so they increased her seizure meds. Food is getting better, and a formula change to Compleat is a huge improvement in the diaper department. Gotta go for now. Just had to vent.

Finally!

Okay, I know I've been quiet in this forum, but life has pretty much been routine for a little while. We are still waiting with bated breath for respiratory counts in the PICU to decrease enough that we can get Kiera in for an elective bronchoscopy and start looking at procedures for possible decanulation. Things may step up in activity soon.

The BIG news is...Kiera signed potty and went #2 in the potty for the first time ever! (Yes, I realize she will be 5 in August). I don't know how consistent this will be, but it's certainly a first step.

No Vent since Monday 3/28 7AM!

So the countdown begins! Kiera is officially on her HME with between 1/2 liter and 1liter O2 24 hours a day! Her Ventilator has gone dormant! We are trying to schedule a bronchoscopy for her near the end of April to investigate our next step toward getting her trach tube out. Things just seem to be happening exponentially around here.

By the way, she is getting to be such a big girls. She is oh so BRAVELY attempting to eat some bites of "big girl" (baby) food.I may get adventurous and start grinding some things too. She can also put her HME back on by herself when it falls off. Sometimes she needs a little help, but when she can't do it, she holds it close to her trach tube until she can get help from an adult.

I guess that's all I really have for now. There will definitely be more to come!

Kiera can READ!

Yup...she's a genius. :) Kiera has been reading her sign language book to us for about the last month, and I was wondering if she recognized the words or just the pictures and illustrations of the signs. Soooo...with my 1st day off for spring break I wrote some of her words on a piece of paper and tested her. She was a bit distracted wanting to do other things, but she very clearly recognized and read (using sign language) 7 words: FRIEND, DIRTY, CLEAN, GRANDMA, BOOK, READ, and TRAIN. I am pretty sure she knows others, but I will have to test her later when she's in the mood to tolerate me. :) She also correctly identifies many letters of the alphabet and has been reading her I SPY alphabet book. I think her favorite letters are E and X. She can also spell GLUE and I think reads that word too. What a smarty pants! I'm so proud of her.

I have long loved this poem

A MONGOLOID CHILD HANDLING SHELLS ON THE BEACH*

Richard Snyder

She turns them over in her slow hands,
as did the sea sending them to her:
broken bits from the mazarine maze,
they are the calmest things on this sand.

The unbroken children splash and shout,
rough as surf, gay as their nesting towels.
But she plays soberly with the sea's small change
and hums back to it its slow vowels.

*When the poem was written, the designation
Down syndrome was not common terminology.

I first studied this poem in my 10th grade Honors English class over 20 years
ago. It made an impression even then, and I thought of it Sunday at my
nephew's birthday party. The cackling, healthy, developmentally on-track
children were all playing and running around. Kiera was quite self-entertained
exploring the house and the yard. She would occasionally take notice of the
other children, but generally kept to her own plan. As the children broke the
pinata and scurried for the candy and toys, Kiera was quite content handling
pebbles in the backyard landscaping. I had to smile to myself at the full circle
nature of my life. Who knew that the poem I learned in 10th grade would hold
such a personal application for me so far down the road? I am so glad that I
was paying attention.

Major Strides!

We upped Kiera's anti-seizure meds, so seizure activity seems stable. Kiera is feeling great and getting into everything. She is down to 1 to 1.5 liters of Oxygen during the day. She is signing a ton and trying to communicate. She seems hungry for knowledge. She requests that her diaper be changed, attempts teeth brushing a little, washes her hands, and actually tried eating about a dozen pea-sized bites of yogurt tonight. She is still VERY orally defensive, but I think she is very hungry. She probably needs her formula volume increased a little, but I am trying to take advantage of her clear desire for food and see if we have a window of opportunity here. She is learning all of the topics on her sign language videos and enjoys sitting on the potty (unfortunately AFTER the diaper is dirty for now). I think she is understanding our use of reason with her when it comes to these scary developmental steps. She is also playing better with other children. She is still very self entertained but occasionally allows other children into her world. Today we went to her cousins' birthday party. They had a HUGE jumper rented which Kiera went in for the first time. Another little girl said "hello" to her and Kiera said "hi." It comes out as an airy whisper when she says it, but it was clear to me. Things seem to be progressing exponentially. We are pretty excited to see what lies around the bend.