Launching a crusade

So, we have moved to Chicago (did I forget to tell you that?). Annie was recently evaluated for Early Intervention in Illinois and her services were drastically reduced from what she received in New York. Given that her most recent re-assessment for services occurred in New York in May, this is a tough pill to swallow.

As the observer, this sounds a lot more like a lack of support for these programs for our young people who benefit so tremendously from them. IL seems to have a lack of providers (students, go become speech therapists, physical therapists or occupational therapists --the Annie's of this world need you!) but, more importantly, lacks the commitment that NY seems to have to provide such vital services for these children. EI taught Annie to walk, talk, eat...you know, non essential things like that which are such a strain on tax payer dollars.

I learned early on, that Annie is a fighter so the least I can do is keep up. She will get her services one way or the other but what about those families who have their own Annie's who don't have the means/courage/ability to fight for their kids? A 3 hours evaluation of a 2 year old with 3 evaluators in the room can be intimidating -who wants to stand up against that?

Let me know if this rings a bell or if you have any knowledge of the vast bureaucracy that is EI. This program is great. We need to make sure our children have access to it.

Happy Birthday!

Yesterday was Annie's 2nd birthday! Another year has gone by and, thankfully, this year has been so much easier for our little Annie. Yes, she still needs daily meds to help her lungs along but we are looking at an Annie who is stable and thriving. She is running around, scraping her knees, barking out orders, and smiling from ear to ear. Those smiles are not new. They kept me going night after night when she was struggling but still managed to flash me one of those high wattage smiles. I have to be honest (and a little selfish for a minute). Birthdays are a little hard. Each year I am reminded that my body gave up and I wasn't able to give Annie the time she truly needed to mature. She was in for the fight of her life. A fight she has kicked ass in. I just deeply regret that she has had to fight it. It's self indulgent, I know, but I think it's important to share those feelings too. More importantly, we ended the day with a happy girl with a chocolate cake face. That is, after all, what birthdays are all about. Especially when you are Feisty Little Annie.

EEEK!

Apologies all around for how long it has been since we last posted on Annie. Elly took her to the pulmonologist WITH PRIDE this past week because she was doing so incredibly well. While it is still very much the case that a runny nose for you or me becomes some substantial hacking and wheezing for Annie, she is really on a high right now and we are so thankful.

After a long wait, Annie was able to resume speech and feeding therapy this past week. She is a sponge and so eager to develop what is such a clear desire on her end to communicate with all of us. She acquires new words all the time but, because she has such "low tone" in her face (she still rarely closes her mouth), she has a lot of difficulty articulating clearly. Her PT remains strong. Annie is running, climbing and learning to jump. If only she didn't climb QUITE so high QUITE so often...

I have received some questions about what these therapies are like for a child Annie's age. I plan on posting something on the blog so stay tuned!!

Acceptance

So Annie has been admitted to preschool. Her first 'normal' acceptance letter. No prescription required. I realized this while talking with the school director today. Go, Annie, go.

Hello friends..we're still here.

It's hard to believe that a year ago we spent so much of our time tense and praying for things to be just a little bit easier for Annie. Today, the reality of Annie is her lungs are weak and there is no real indication that this is going to rapidly vanish in the coming months and, perhaps, years.

Yet she trudges on -impatient with all the meds, yet eager to live life. She is starting to gain some words now and we are committed to maintaining the frequent speech and physical therapy that has made such a difference in her development. We are so thankful to the Early Intervention program and all that it has done for Annie.

In other news, Elly has resigned from her position and will be finishing her doctoral studies. This will allow her more time with Annie and Luke and, frankly, provides her the opportunity to participate in those things that are particularly meaningful to her that have been placed on the back burner for too long. Friends, colleagues, and families have been so wonderfully supportive and we are eager to launch this new stage of our life.

This is the lesson of Annie: don't waste time. Seize upon the things that matter -whatever they may be- and do not let go. These are the things that truly sustain you and your spirit. Annie has placed us upon a treacherous journey but it has been truly enlightening. What a gift these little blessings are that enter our lives. Love to all, more to come...

Bouncing off the walls... with pneumonia

So our little guy has come down with pneumonia. You would never know it. He's still running in circles, stopping to cough, then resumes running in circles. However, as you can imagine, we went back into Annie Lock-Down. One parent per child. Lots of hand sanitizer. So far, Luke is on the mend and Annie appears to be resilient. We have come so far from last year. Thanks to the docs, drugs and God.

On another note, I popped in during Annie's physical therapy today to see her walking on a balance beam type of set up. Considering she wasn't even walking two months ago, it is just incredible to see how much she gobbles up all of this therapy. Give us another year and you'll never know where she came from!

Turkey jump

We were all set to celebreate T-day at my mom's horse farm tomorrow. Unfortunately, Annie is starting to have some breathing issues so we are trying to avoid any triggers for her and have had to ask our family to move T-day to our house. When you have an Annie in your life, it's easy to become very focused inward. I know it asks a lot of friends and family to adjust their plans. We're thankful to all of you!