Posted (Tina) in All Posts on April-14-2009

Wow, time has flown by. The Bun’s parents have been together for nearly 19 years and married for 14 years. It’s hard to believe sometimes. There are no festivities planned today, as Josh is battling a sinus infection. But we’ve opted for a rain check to celebrate at a later date.

Ella did have a rough morning with lots of meltdowns at things that were not a big deal – changing clothes, wiping her face or dripping nose, etc. So when the OT session arrived at 11:45am, we were not expecting success. We put Ella in her chair and turned on her favorite video for distraction. She surprised us – she did really good and tolerated more than we were expecting. Again, not a lot of food intake (our goal for these sessions is 1 ounce) and many times we get only a few bites worth into her mouth over an hour session. But today, her recovery time was better and retching was less often. It also seems that once she gets anxious and worked up, the retching is so much worse. A couple of times, she started to get upset, still swallowed the food and avoided retching. It is not very common, but was good to see. Again, very small steps with the Bun!

Overall, it seems that the Bun was feeling a bit better today. Although her nose was still giving her grief, it seemed to be a bit lighter than the past few days. And the nights over the weekend were restless whereas last night, she only woke a few times. Have I mentioned how excited that we are that we are no longer using Captopril? Yes, I feel like I’ve only mentioned it about a thousand times, but it has made such a HUGE difference. And without her SVC procedure, we would still be using it. Thank you Lord!

She did not have physical therapy today, but enjoyed her latest activity of sitting in her Bumbo seat with her laptop computer. Most of the time she is hitting the buttons on accident by leaning onto the computer, but she stops and watches and listens, so you can tell that she is processing. It was getting her excited. Maybe she is a techy, computer geek like her parents? Only time will tell…

Many of the blogs I’ve been reading over the past few days as well as Ella followers have suggested some great books to us since our news last week. So I went online today and placed a large order of books. I feel like I am going to become a book worm, but truth and understanding about this journey is just what is needed for the soul right now.

Aside from that, just resting in truths that I come across like this one:

Deuteronomy 31:8 (NIV)
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.