Happy Birthday, Annie.

She's 4. And for the first time, I didn't wait up terrified and unhappy because of what I did to her 4 years ago by not being able to stop a delivery that was 10 weeks to soon. I know, it's not my fault. Blame the uterus, not the Mother. Man, it's tough to be a uterus. But, every year, I have, in all honesty, hated this day. It represented my greatest failure as a mother, not my greatest joy. Today, is different. She is four. She has this face that lights up a room, a laugh that bubbles over and infects everyone around her, she loved princesses and pink. She is healthy. She is my joy. Today, joy has trumped sorrow, disappointment, and fear. She is truly the stronger of the two of us. Her strength has finally won out over what I saw to be my failure. I am so grateful for her in our lives. Annie will always be feisty little Annie. She has fought harder and overcome more obstacles then I could ever imagine. Today, she goes to school, stomps her feet, and runs around with all the big kids. She is growing and her need for therapy is abating. The girl who couldn't be plotted on the growth charts is now in the 75%. The girl whose developmental delays were the topic of every conversation reads, runs, and shouts at me from two stories away (that takes breath support, folks). What a gift. What a shame that it took me 4 years to realize what Annie has always known. Who the hell cares what day she was born? The fact is, she's here.

What? No wheeze?

I am thrilled to say that Annie has survived her first round of the flu LIKE ANY OTHER KID WOULD. She puked, she ran a fever, she was miserable..but there was not severe breathing issues, we didn't hunker down at the doctors office for daily visits. She kicked that flu bug without so much a as a wheeze or hacking cough! Yeah, Annie!

Earlier this week we saw her pulmonologist again who I think was genuinely disappointed that there had been no emergencies in the past three months. Sorry to disappoint (not really)!

Looking for my soapbox

We've been in Chicago for three months. Annie still doesn't have physical therapy. She has an amazing speech/physical therapist but she sees her for 60% of the time that she had in New York. In the meantime, we notice that Annie's tongue is lolling out more and more.

The most progress we've made is an offer to have her re-evaluated for services to see if she even needs them anymore. I take that to mean give us a chance to 'evaluate' her and take away your prior approval. Um, no thanks.

I have come to believe that it is the state of Illinois who has the true developmental delay. Not serving young children whose minds and bodies are rapidly developing creates greater costs down the road. Early Intervention is appropriately named; by intervening early and aggressively you, the state, are saving yourself a chunk of change down the road. I also have got to believe that there are people graduating from the many fine universities in the state who could be employed by the EI network. Are folks tapping into this? How about forgiving a few student loans if students work for EI for a few years? Do university career offices even know about EI?

These are just some random and spontaneous ideas. I'm sure there is another side to the argument but somebody needs to serve these children. All they want to do it grow.

Thanks for letting me climb on to that soap box for a minute. Any more soap boxes out there? I'm happy to come for a visit!

On another note, thanks for those of you I know and don't know for your thoughts and support. It always helps especially during these times of frustration.

Keep posting! Keep following!

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.