Thank you, Therapy God.

After two months of persistent nagging, Annie started speech/oral motor therapy this weekend. She has also been approved for physical therapy after I had to essentially appeal the prior decision and ask for a PT eval. All this when, in May, the state of NY did not dispute at all the need for Annie to continue to receive an aggressive therapy plan. Yet IL disagrees and has spent the last two months putting our family in a position where we have had to push to receive comparable services. I miss NY.

I should stress that all of this occurs within the context of a group of EI coordinators who have tried their best to navigate the red tape to advocate for us along the way. But a shortage of therapists and the yards of red tape caused by cost-saving measures cause Annie to not receive services during a critical time of her development. Oy.

Her feeding therapist is a rock star. After all this wait, I was thrilled to have any services resume. To then find her to be such a balanced and talented professional was a huge relief. I am thankful to all those people who make EI work for families who need it but it sure is a road that demands incessant advocacy on behalf of the family.

I feel profoundly for those families who tire of advocating, who don't have the time, or simply don't realize that it is within their rights to push back when that initial 'no' is shared. We find a way for Annie. We always do. But what about those families who don't have the capacity to fight this uphill battle?

Annie pics! Not letting the rain stop her from the March of Dimes walk!

Annie pics! Enjoying cupcakes at our good-bye NYC party at Gran's farm

Potholes along the way

So Annie's lungs have been adjusting to Chicago. She got a little cold about a week ago that rapidly progressed to something far more severe for her lungs and she is now on some hard core steroids. The side effects can be a bit scary (she hasn't been on them, thankfully, for about a year). So here we are: new city, new docs.....same lungs. Time for Basic Training.

I have been thankful that the docs here have been as compassionate and accessible as our docs in NYC. Everyone is trying their best but the growing pains are certainly there. When you are coming in for a sick visit you see whomever is available. When Annie isn't doing well, we come in nearly every day to check on her o2 levels. Normally, it's just a touching base visit and we move on. Not now. Each doc has different opinions on treatment plans and I found myself on the defensive justifying why I made the treatment decisions that I made. I'm sure no one is 'wrong' but it leaves you unsure and second guessing yourself during a time when there isn't much room for debate.

Emotionally, it's intense. She was so bad on Thursday (bad for Annie is she is wheezing and coughing so badly she is gagging and vomiting) that we decided to put her on a drug that can have substantial side effects. Then I see another doc over the weekend who says she would have tried something first before this steroid. Argh. It is so hard to agree to give her these drugs that can have such dangerous side effects only to be told "Well you could have tried...". That, my friends, is torture.

As always, Annie is our strength. Today she started eating again and we are definitely over the hump. But this road was rough and bumpy. Her new pulmonologist is apparently a rock star and I am definitely looking forward to sitting down with her and putting together a battle plan we can all agree on.

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!!