Wednesday, October 27, 2010

Look at this Girl--Notice Anything??

Here is Lily, showing off her cap on her trach.....this forces her to breath through her mouth and nose, just like everyone else.  I say she is tolerating it quite well.

Her other talents are crossing her eyes whenever she feels like it.

Her Fearsome Scary Skills--watch it!!

Oh Brother, it is nearly a burden to be this cute!!
Check out the rosy cheeks and lips with her trach blocked.....very cool.

She is quite the character.  We are thrilled that capping is going so well.  If she continues to breath well while capped,  we should be going into the hospital soon to get this trach out. Deo Gratias!

Thanks for your prayers, we are most appreciative!

Sunday, October 24, 2010

Here I am!!

Yes, I am alive!  It has been a little while since I posted, it has been pretty busy around here.  Here are a few things going on in our life.....

Lots and lots of doctor appointments.  Having five kiddos with a syndrome means lots of doctors.  Last week was genetics, pediatrician, and ENT.  We will be seeing a pediatric retinal specialist this week.  Five kids....five sets of eyes  We are also up for another orthodontist appointment for two boys.  Next week is developmental pediatrics for Lily.  Doctors like me.....they see many loans paid off as I enter the building.  I’m glad I can help......

We have had a lot of family in town.  That has been a big blessing and much fun.  Okay, people, stay away for a little bit now, and let me clean my house!!

Lily had surgery last week.  It was very quick.  So quick I was just walking up to the waiting area with my coffee and bagel, saw the surgeon who was talking to my husband, and panicked thinking, “Oh my...something is not right if they are out that fast.”  Isn’t that sad?  Instead of thinking, “Wow, that was fast, how cool!”, I panic.  Such is life in the halls of fatigue.  What the ENT did was look for scar tissue in her trach area, during a bronchoscopy, and clean out wax from her ears.  She has NO scar tissue....amazing.  AND, we can start capping Lily’s trach, making her breath through her nose and mouth, instead of that hole in her neck.  We have capped her a few times yesterday, for almost an hour.....and she did fine.  We just need to build the time up gradually, and she can get her trach out when she has worn the cap full time for three weeks, during waking hours.  Wouldn’t that be wonderful if she could get her trach out for Christmas??  Hey, I’ll even go way out and ponder no trach for Thanksgiving.

Lily is starting speech again. Our first session was fun, she has such an expansive vocabulary, but pretty much speaks in vowels only.  Consonants sort of evade her, except “M” for Mama and she also replaces a lot of things with “G”.  Gaggy.....Gam....too cute. The girl has a lot of work to do, though, but I think we are up for the challenge.  She is quite motivated, she has waaay too much to say to everyone she meets, to stay behind too long.

Pete has a lot of orthodontics that are getting ready to take place in the weeks to come.  Months of palate expansion should be interesting for a child who is still very orally defensive.

I am finally getting back my health and strength, Deo Gratias, after a very trying time after my surgery this summer. The only residual thing is getting a follow up ultrasound to see how that small mass on my kidney is doing.......we are assuming it is an angiomyolipoma....a big word for a small piece of fat with some blood vessels running through it.....but nonetheless, we need to make sure it is behaving.  They can start bleeding internally if they get too big.  No thanks.

Here are some pictures of what I have been up to other than running to the doctor for appointments, cooking, cleaning...and oh, homeschooling!!
Lily’s favorite thing in the world.  Dogs.  These were especially sweet dogs.  I didn’t know giant poodles were so sweet.  Check out the built in pompoms on their feet!

The Blessed Mother’s Birthday on Sept. 8th.  Lily was ready to dive into the cake’s icing, the only part she can eat without having swallowing issues.

Some people have a personal shopper, we have a personal gift opener. She insisted on helping J out for his 16th birthday, good thing!

I made a pin cushion for my sister for her birthday.  No quilt this year, Sister.....but look, isn’t it cute enough to eat??  Don’t though...pins are hard on the GI tract.

I made these bags for my dear nieces, for their birthdays, that also are right before St. Therese’s Feast Day.  I was really happy with the way they turned out.  I stitched out St. Therese on my embroidery machine.  I keep that baby busy!
I am currently trying very hard to finish a knitted baby sweater for one of my husband’s nieces.  It is cute!  I’ll check back in with pictures, soon.

Craft Fearlessly and eat lots of is the only way, I’m tellin’ ya!