Monday, January 17, 2011

sleepless in january...

Hi Friends (:

Things are... well... a bit unusual at the Elsaesser house. To explain the title of this post, Lyla has started having either nightmares, or night terrors. We aren't really sure, but it started a few weeks ago, and she is usually up once or twice a night screaming, last night it was four times, plus once more to go potty. I feel just awful for her, I remember being scared when I was her age, and it's just no fun. Then Evie decided to join in since she's teething, which equals two crabby girls, and two tired parents!

Evie's IFSP went well last week. Cognitively she is progressing beautifully, and physically she is improving. We also got re-approved for Medicaid, PRAISE the Lord! I got copies of all of the recent doctor reports that went to the Medicaid office and took some time to read through them carefully. The reports are always so much more disturbing than the visits... for example when I talked to the pulmonologists nurse last week she just said that Evie had "some significant events of desaturation and needed to stay on oxygen." fair enough. The report said 'Evie desaturated 311 times with the lowest saturation of 62.' 311 times is a lot, and 62 is incredibly low, like blue lips low. I can't believe she didn't cry if her oxygen really got that low, those test results were shocking. I am looking forward to speaking with her pulmonologist at the appointment next week to see what he thinks about this, and why she did so poorly.

The next unusual event is happening tomorrow... John is taking Evie to her 6 month neurosurgery follow up. Although John is incredibly capable and very knowledgeable about Evie and her disease, I have never missed an appointment! Last week our first session of Women's Bible Study was cancelled due to a snow day, thus tomorrow is our first. It is a meeting I don't want to miss, and I can always call the neurosurgeons PA if there are questions I still would like answered. I'm sure the appointment will go fine, but I do have some big concerns about Evie's head and the more recent re-bulging of her soft spot, so hopefully they will thoroughly discuss it and come to a conclusion about why it is bulging.

Today we had Evie's CT scan for tomorrow's appointment, and I'll say that I am definitely out of practice when it comes to hospital visits. I guess you could say I am getting spoiled in a good way, yet it really made me feel bad for my friends who are still hospitalized frequently. After about a 15 minute wait in the waiting room, a 6 second scan, and a few more minutes of waiting for a disc, I was so exhausted from getting to the hospital with both girls, and getting them both to the scan area that we had to go share a brownie and soda in the cafeteria before we made the trek back out.

On the way to the hospital I heard the song "Your Love" by Brandon Heath and my eyes filled up with tears. I've been incredibly emotional lately (I'll blame that on the lack of sleep!) and this song set the pace for a good day. Although it was a bit exhausting, I really enjoyed the morning with my girls even if it included the hospital. I will post a few of the lyrics below.

Lastly, I realize I am a few posts deep with no pictures!!! We got a new camera for Christmas and I have some fabulous pics, but I haven't uploaded any yet. I promise to get some new ones soon, the girls are constantly changing so much I need to update.

Love you friends (: Prayers for sleep would be greatly appreciated

Your love, your love,
The only thing that matters is Your love
Your love, is all I have to give,
Your love is enough to light up the darkness
It's your love, your love
all I ever needed is your love

You're the hope in the morning
You're the light when the night is falling
You're the song when my heart is singing
It's Your love
You're the eyes to the blind man
You're the feet to the lame man walking
You're the sound of the people singing
It's Your love, your love.


  1. Seriously- we want pics of your little beauties! Especially with that fabulous new camera you have. Hang in there, mama- no sleep is a real drag. Prayers to you and in the meantime get you some good espresso! :)

  2. I just wanted to say hello. I've been following your blog and want to let you know it's so uplifting to hear your story. I am 29 weeks along with my Noah, and our story is sounding very similar to yours. Our Dr. is leaning toward either OI or hypophosphatasia as well. Thank you so much for sharing your story.