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.

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...