Tiffani left for Wyoming yesterday. Having completed her final classes at George Mason, she was ready to head out for her third summer at the Heart Six Ranch in Jackson Hole. We said goodbye with tears streaming down our faces.

I watched as she said goodbye to Lila on Saturday night~ with Lila thinking it was like any other night~ and when Nick walked away with her Tif just lost it. How she loves her little sister.

To chase away the blues, we needed to have a fabulous day yesterday. So we did.

We went to church in the morning, followed by lunch at a local organic bakery. Love that place! The owners have two little boys, so I guess that explains the toys that fill the back of the small restaurant. Lila had a great time playing while Nick and I chatted and took our time browsing the menu.




After lunch, Lila took a 30 minute nap. (Seriously, what's up with that?) It seemed to be enough to sustain her because she was in a great mood when she woke up.

She wrote in her daddy's Fathers Day card...............


Then we changed our clothes and headed outside to play.




Lila wanted me to swing with her..............



And she also convinced me to slide with her. She kept saying, "Your turn mama." So I kept going down the slide. I probably went down that slide about 30 times. Not a good idea.

(In case you are wondering, I don't recommend this. My butt will probably be hurting for days. It's actually tingling/throbbing right this second. Stop laughing, I'm serious!)

While Lila and I took turns sliding, Lila's daddy was enjoying his Father's Day. Taking after his Italian grandfather, he loves to work in his garden. And that is what he did. (Don't laugh at his white socks. If he doesn't wear those he gets horrible bites on his ankles.)


Lila helped him. For a brief moment in time..........


Then it was back to playing for her. Working on those gross motor skills, she was determined to walk up the slide.

She was so excited when she finally made it. "I did it!"


What an awesome day we had. I love days like that. I could have done without the dishwasher crapping out and leaking all over the floor, but we can't have everything, can we?



No, we can't have everything. I'd say we come pretty close, though. We are pretty simple people. We have a simply awesome life.

And even though we are missing Lila's brother and sister, we are so proud of them and happy that they are spreading their wings and following their dreams.

Hugs~


Linda

In between playdates and mini vacations......

There are school days, therapy sessions and appointments to endure.

Miss Lila had a sleep study a few weeks ago, and we went to the follow up appointment right before we headed out to the lake last weekend. We found out that we have a few issues to deal with.

Lila still has mild obstructive sleep apnea even after her T & A. The specialist recommends that we go back to the ENT to see if her adenoid has grown back. (Did you know that adenoid is supposed to be singular instead of plural? We only have one adenoid. Just found that out myself.) Apparently an adenoid cannot be completely removed, so it is quite common for it to grow back. It was also recommended that Lila be checked for excessive lingual tonsillar tissue. All people have tonsil tissue on the back of the tongue (lingual tonsils) that are different from what we normally think of as tonsils (palatine tonsils). In some cases, substantial enlargement of the lingual tonsils contributes to airway blockage and obstructive sleep apnea. Just an FYI~ we were told that 50% of kids with Down Syndrome have excessive tonsillar tissue. So, back to the ENT we go!

But wait...................there's more. Lila was diagnosed with Periodic Limb Movement Disorder. An average person moves their legs 10 times per hour when sleeping. Lila averaged 29 kicks per hour. All. Night. Long. Periodic Limb Movement Disorder is often associated with low iron or ferritin. We just had all of her bloodwork done in January, but we will be getting everything checked again ASAP. Will update on this situation soon.

All of this movement is also disrupting her sleep. The end of the report reads:

Increased awakenings and arousals are present. These are probably due to increased leg movements and obstructive sleep apnea. However, any cause for discomfort such as reflux and asthma could contribute. Recommend vigorous medical therapy for nasal congestion, reflux and asthma in addition to other recommendations as listed.

You have to love medical reports. LOL

None of this is stopping her, though. She just continues to enjoy her life. : )


I will be posting pictures of our trip to the lake soon. We had such a great time! For now, I will be rapidly moving about as this is a very busy week. A Buddy Walk meeting last night along with a brief visit from Justin and Maggie, a sleep evaluation at Loyola University this morning, a night out with my women's club tonight, Lila's end of the year party tomorrow morning, a Wine & Wellness presentation at my house tomorrow night, and a possible trip into D.C. on Thursday to attend a briefing on the education and assessment of students with DS and other intellectual disabilities.

Last but not least, Friday's events. I'm so excited about this day! On Friday morning I will be taking Lila to the awards ceremony at her school where she will be receiving the Citizen of the Year award for her preschool class. Woot! In the afternoon we will be attending a golf tournament that the DEA family is sponsoring for Lila's Buddy Walk team, Lady Lila's Lineup.

I will be so busy that I won't even think about the fact that my firstborn is leaving for Wyoming this weekend. Yeah, right.

What's that word again? Bittersweet. Sad because we will miss her yet happy because she loves it out there so much! Ah, the winds of change. I can feel them.

That's all for now.

Hugs~


Linda

Tomorrow................

We will be on our way to Starrucca, Pennsylvania. to hang out, relax and chill. Mom, Dad, Nick, Lila and me. We will be staying in a lake cabin at the foot of the Catskill Mountains.

I hope to be in the middle of the lake on one of those kayaks.

Inside of the cabin..................

No internet access, no cell phone access. Sounds like heaven. Will talk to everyone when we get back!

Hugs~


Linda

I love Saturdays...............

Most Saturdays are good days at our house. No work, no school. Lila loves it because there are more people in the house. Today was an especially good day because my parents are here!

Lila loves being involved in whatever is going on in the house. Today it happened to be laundry.

Check out the big girl!

The plants needed watering. She was such a big helper!

Pay no attention to the fact that there is more water on the ground that in the planter~
So serious.................

After all that work she needed some down time.

Lila woke up from her nap to a big surprise. Thanks to the generosity of our awesome friends Pam and Riley, Lila has a new swing set to play on! Riley had outgrown the swing set, and Pam said that we could use it! Thanks, Pam! And thanks to daddy and grandpa for all of your hard work to pick it up and put it together!

Check out the joy on her face!

She absolutely loves it!

After Lila played, we snacked on appetizers and relaxed, enjoying some family time. For dinner, we had london broil, tomato basil salad, and asparagus. We all worked together and it was delicious!

Tif and my mom working in the kitchen.

And just because I love him, a picture of me and my man.

So thankful for my family, so thankful for my life. I am so blessed.

Hugs~


Linda