just pictures

More Stella News

KK came to spend the day with the kids and before she left, she mentioned how different Stella has been behaving.  I haven't said anything to her because I was curious if it was just me and wishful thinking.  Some examples of minor changes....Stella wants to engage more.  She still has periods during the day where she likes to play alone, read books, sings songs, just do her own thing.  But she is seeking interaction much more frequently.  Her new favorite thing is to come pull someone's arm and say "want chase."  Then she squeals, runs away and looks over her shoulder to make sure we are in pursuit.  Any time she is hungry, she heads to the pantry and says "want cookie."  We are usually able to talk her into something other than a cookie.  She can only have one or two of those a day.  She is SO ready to be potty trained - every time she goes just a little in her diaper, she starts getting undressed and says "freshie."  That's our word for fresh diaper.  KK even got her to use the potty twice today!!  Yesterday, Reese was sorting her new nail polish (it is so hard to take this girl shopping and refuse her request for "mama, it's the amazing, beautiful Elsa polish") and Stella started chirping out all the colors she saw.  I've never heard her list all the colors before, especially with zero prompting!   We are all noticing lots and lots of spontaneous speech,  including more 2 and 3 word sentences.   I  read reports and talked to a few moms who noticed a little jump after this procedure - seems like cleaning out the bowel and removing irritants for a few days makes a difference.  They also said those gains might go away until we start the treatment plan (mid-October) but fingers crossed that we can hang on to these gains by continuing a stricter diet.

Here are pics of surgery day.  We got lots of snuggles before she headed to the OR.

Here is a picture of the pill camera.  Yes, I saved it once it made its exit out the other end.  Dr. K's assistant told us a funny story of another mom who had twins.  Both needed this procedure so she saved both pill cameras, made them into a pair of earrings and sent a picture to Dr. K thanking him for the most expensive jewelry she's ever purchased.

And here are some of the scope pictures.  I'm not a doctor (shocker) but I can see the spots and polyps  he pointed out where the bowel doesn't look healthy.

OK.  No more bowel talk for a while.  Let's talk about my other two cutie pies.  They love story time.

Reese was hollering my name during rest time (she calls me Jeeeeeeeeeenny sometimes) and I went upstairs to find her bracelet stuck on her knee.   And of course, she had her Elsa dress on.

Legos are the best:)

All for now:)  

Stella on the mend

Stella had her surgery yesterday morning and is doing great!!  The toughest part was preparing for the procedure.  She couldn't eat all day Monday and had to drink 24 ounces of water mixed with Miralax.  We would watch a video, pause it in the middle, make her drink ten sips, then resume the video.  Not fun!!!  I won't go into too much details but of course, there was an enema and a suppository involved.  Really not fun!!!!  We headed to the surgery center on Tuesday morning at 6:00.  After talking to the anesthesiologist and Dr. Krigsman, we put on our scrubs and headed back to the OR.  I sat on the table with Stella on my lap and put the mask on her face.  Of course, she didn't like that but after five breaths, she passed right out.  I laid her down on the bed and Wes and I gave her a bunch of kisses before we headed to the waiting room.  We knew the procedure would last 2 hours - Dr. K took 16 biopsies from different areas of her intestines.  He took pictures that I will scan so you can see - they show a healthy section versus a "diseased" section.  After the surgery, he told us his suspicions were confirmed.  Stella does have several spots that need attention and he has no doubt he can cure her inflammatory bowel disease.  The pill camera he placed inside her intestines took 5 pictures a second for 8 hours.  He will be reviewing those pictures, as well.  We have a consultation with him on September 30th to determine her treatment.

Let's talk a second about the nurses and assistants that work at the surgery center.  Every single person was so kind, thoughtful, helpful, I can't use enough adjectives to describe them.  One nurse is fairly new to Dr. K's practice and she excitedly told us about an 11 year old patient - he had been completely non-verbal since birth.  After Dr. K did his surgery and started his treatment, this little boy started talking and engaging others!  He is doing amazing work...I have no doubt that his treatment will help Stella and her bowel issues.  I don't think it will cure her autism, but I think it's a VERY important piece of the puzzle of helping her be a happy, healthy little girl.  And I can't say enough good things about Dr. Krigsman.  He has dedicated his life to children with autism who are suffering and he is truly changing lives.

Back to Stella, when she woke up from surgery, she was THIRSTY!!  But for the first three hours, she was only allowed to have a few sips of water.  She kept asking, "want water, want water."  It was so hard to have her speaking so clearly and not be able to grant her request.  We did give her a sip here and there.  She was exhausted by the time we got home and fell asleep.  She was wearing a belt with the pill camera device strapped to her waist.  And it was heavy.  She had to wear it until 4:30 pm and luckily, she slept most of that time.  It was almost too heavy for her to walk around with.  When she was awake, we laid in my bed and watched videos while Wes took care of Reese and Drake.  At 4:30, the belt came off and she was allowed her first meal.  Dr. Krigsman warned us to only give her a snack because she would throw up if she ate a full meal.  So she ate two bananas, got a bath and passed out again.  We were a little nervous she wouldn't sleep through the night since she had slept most of the day but she did!!!

She had a normal breakfast this morning - bacon, bananas, berries and a granola bar.  All 3 kiddos played happily this morning.  We took a trip to the grocery story to get out of the house, then lunch.  She didn't eat much lunch and I could tell she was super tired.  So all 3 kids are in bed (Drake and Stella are napping, Reese is singing "Let it Gooooooooooooooo") which gives me time to update the blog.  I love rest time:)

Wes took some pictures on his phone but he left town this morning so once I get those,  I will share them.  I have a  few pictures post-surgery...

Waking up

Driving home with the huge belt under her pajamas so she doesn't mess with the computer.

Passed out...

 Cuddles with Mama.

Playing the next morning.  Still sleepy but happy.

Stella

We are doing Stella's procedure tomorrow.  Sorry for the last minute confirmation....it has been a VERY long day, she's exhausted, we are exhausted, and we can't wait to get this over with.  She is scheduled for 7:30 am and we hope to be leaving the hospital around 11:00 am.  Sorry I don't have more info at this time.   I'm just mentally, emotionally, and physically exhausted.  This too, shall pass.

XOXO - and I will update the blog and send a text to immediate family after the surgery.

Videos Galore

Time for video catch-up...

Drake sounds like he has marbles in his mouth.

I caught Reese trying to look at her back in the mirror....hilarious!

Stella singing on fast-forward speed.

Reese's latest catch phrase - "Oh Dear."

Her other favorite word....."WHY?"

Drake playing with trains.

Adding another surgery? Why not?????

Stella is scheduled for surgery on Tuesday but she came home from school with a pretty nasty cold.   I was able to talk to the anesthesiologist and discuss her symptoms.  Unless she is feeling MUCH better on Sunday evening, we are going to have to re-schedule her surgery.  But that's ok because we just added another surgery to our household.  Who?????  Reese had a visit to the ENT today and when he took a look at her tonsils, his reaction was immediate.....THESE NEED TO COME OUT!  I knew they were big - KK mentioned it earlier this week and when I took a look, I could barely see a hole for her to breathe.  He is super flexible and told us to give him two weeks notice before we want the surgery done.  Trying to coordinate Reese's surgery with Stella's surgery with our vacation and Thanksgiving and Christmas!!!!!  Definitely want to get it done before January because it will be 100% covered - we've already reached our out-of-pocket maximum for the year.

So that's the bad news from our house today!!!  In the world of good news, we had a visit from Nana and Pop today.  They stopped in for a few hours as they made the drive home from New Mexico.  Sounds like they had a wonderful trip and enjoyed the beautiful weather.  Today was HOT and MUGGY, so probably not the best welcome back to Texas.  


Pics from the day:

Reese inspecting Pop's "boo-boo's"  -  any freckle, dark spot or variation in skin tone is considered a boo-boo in her eyes

Playing with our new toys from Nana

Catch!!!!

Reese sitting in the doctor's chair.

Stella drawing a pig.

New Routine

This is what our new daily schedule looks like....

6:20 - start collecting kids that are awake, breakfast, get dressed, pack lunches/snacks

7:20 - hop in the car and start the 20 minute drive to Steiner Ranch

7:45 - schlep all 3 kids to Stella's classroom to drop her off

7:50 - sit in gridlock TRAFFIC for 30 -40 minutes to get to Country Club

8:30 - drop Reese and Drake at Kids Club.  Exercise, busy work or errands

11:00 - Lunch with Reese and Drake, then pop them in their beds  (Drake takes a 2 hour nap, Reese reads books in her bed)

12:30 - bus drops Stella off at home

1:00 - Stella's afternoon therapy starts in-home - Reese joins her for part of it

2:30 - Drake wakes up and joins Reese and I 

3:00 - snack

4:00 - wind-down - put a movie on while I make dinner

5:00 - dinner for kids

5:30 - bath

6:00 - bedtime

6:01 - Relax with my hubs!!!!!!!  

KK comes a few afternoons a week to help with the craziness, especially when Wes is out of town. And she helps on the weekends, too.  Don't know what I would do without her!!!!!!!  

Here are some pics of Stella getting off the school bus.  

Drake and Reese playing upstairs.

If there is a mirror around, Reese is checking herself out.  Ruh-roh!!!!