What a Fun Day!

It is easy to wake up at 5 am when you get to wake up to this:



I thought you might enjoy seeing this precious smiling face...I hope it brightens your day as much as it brightens mine! God is so good...He continues to teach me appreciation. When Audrey and Elise were this age, I could see these kinds of smiles all the time...I loved it! But, something about the rarity of it makes it so much more precious!!

Lydia and I have had such a fun day today...she woke up with those smiles, and she has been happy ever since! Her only down time was at PT with Susan...boy, has she got these therapists' numbers! She was fast asleep for most of the therapy session...a re-run from OT with Teresa on Monday. I am joking when I say this, but it sure seems like she decides that she is not going to work...and off to sleep she goes.

This little girl knows just how to make me forget my worries...thanks to all of the people who got the brunt of my venting yesterday morning...Jennie, Jory, Mom and T. I got a call from a nurse with Home Health...they had to re-draw blood from Monday's blood test because the blood clotted....again. I was pretty livid about it....the third week in a row. But, I have to just let it go...The results were good, so that's what's important. Dr Hollman and Dr Wood were both concerned with a low CO2 level that she had for last week's test. That could be a sign of acidosis, and she had never had a low level before. This week's test returned to normal, so they are not really concerned about it anymore. Thank God! They said that if she cries during a test, it could effect the level...of course she cries during the tests, so hopefully that was the reason. I'm sure that they will be watching it closely.

I put a call in to Dr Hollman yesterday about Lydia's jittery behavior Tuesday night. To re-cap: she had some twitching in her hands and arms, she was terribly irritable, and she was very easily startled...could not stand sudden movements. This was exactly her personality early in life. I had assumed that either the ACTH or maturity (or a combination of both) had calmed her. We wondered if it might be withdrawals from the med: it's not. She said that Lydia would not have those kinds of behaviors as withdrawals from it...the things that we look for when weaning from the ACTH is a change in blood pressure or the presence of infection. That is why she has her blood pressure checked 3 times a week and blood drawn once a week. Dr Hollman said that we need to watch this behavior closely to determine for sure if the startles are truly caused from some outside stimulus. It may be some type of jerk from her nervous system that she would need to treat with other medication. She encouraged me to keep her updated and to call her cell phone if I needed to...she said that that's the only way she'll know what's going on...I am so thankful that Lydia has her to care for her.

New homework from PT:

Susan said that we are going to start working from the bottom up. Since Lydia continues to have trouble holding up her head...we are going to try to help her to sit with support, and use her arms to hold up her upper body. She liked the way that I've been putting pressure on her lower back to help her straighten it. She gave us a large elastic band to put around her torso to sort of work the same as my hands have done...then my hands will be free to work with her from the front. I can put a boppy pillow around her for safety. We will hold her hands on her legs in front of her to encourage her to bear weight on her hands. She noticed that Lydia is pretty much only motivated by people and funny faces...toys don't really do much for her. She also gave some homework to Paw-Paw: to make a chair for her that sits directly on the ground and is custom fitted to her size. It will hopefully help her to keep her back straight and sit with support...she can use it for a while, with my help at first, of course.

Big thank you to Bridget for getting a baby scale donated for us!! Now, there shouldn't be any more doubts about whether or not Lydia is gaining...she has been pretty much continued to be on the up-swing. I'll have a lot better idea once we get the new scale and begin using it. Thanks again!

Thank you all for your continued prayers and all of the prayer lines...prayer is the best medicine! Also, special thanks to Alexa for Lydia's prayer blanket that you sent!! I try to keep it on her as much as possible...it makes me feel a little more at ease to see her wrapped in prayer...it also keeps me reminded of all the loving people who wrap her in prayer each and every day.