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.




  1. Payton still had mild OSA after her T&A too, and she also has PLMD, yet has never had iron/ferritin levels out of wack. It is a screwy science and seems to be pretty common in kids with DS. I knew the adenoid could grow back, but interesting on the whole tonsil thing.

    What day is Tif leaving? I guess it is good you aren't going to NYC since you will want to be here when she leaves. Boo.

    Have fun Friday!

  2. I am so proud of Miss Lila for her Citizen of the Year award. Wow - what an awesome recognition for an awesome girl.

    Going to miss your firstborn so much. Nate sheds a few tears everytime we talk about Tiff leaving.