Whew

Long day but we are doing better. Gave Annie another dose of the super steroids today and it really seemed to pay off. She was finally able to get some sleep. She's still wheezing and coughing but finally able to eat and sleep better. Whew.

Caught off guard

Annie is really having a hard time. Today we made the hard decision to up her meds and give her an additional steroid to try and kick this. We are bringing in the heavy hitters -and with that comes a risk of some scary side effects- but, so far, we have not found the silver bullet that will just give Annie a break from struggling to breathe all the time.

I'm going to be honest. This is hard. It took us by surprise and we are having minimal gain right now as we try to get this under control. Yet again we have been thrown that unanticipated curve ball just when we thought we knew how to play the game. I could share the details of what this is like -how hard it is to look at her when she is fighting so hard and not have any quick fixes that will just make it go away- but that is just not our reality. Our reality is a daughter who, even now, finds the moments to smile and laugh. A doctor who calls all the time to make sure every possible thing that can be done for Annie is being done. Luke who radiates love and strength for his little sister. And Steve who reminds me that this too shall pass. So.... pass damnit.

PT and Annie

Annie has a great PT but the session took a much greater toll then I think any of us expected. Since her session on Tuesday, Annie has been having a hard time getting her breathing in order. She is back to wheezing and coughing and we are back up with the meds. It sucks. I have to be honest, I was really suprised that she had such a strong reaction to the session. It wasn't like the therapist was making her run a marathon with a clothespin on her nose!

So, team Annie is back in action. Lima, our babysitter, has jumped right in and we have been in close contact with her pediatrician and updated her pulmonologist. Everyone is being fantastically supportive and we just pray that we will be able to drop her meds down again soon. We were so close a few weeks ago...

Let's get physical

Annie is coming out of her latest episode and is now back down to two doses of steroids over the course of the day. Whew. This week she will start physical therapy while we wait for the Early Intervention (EI) assessment to come in. Annie did have her assessment for EI earlier this month. In a nutshell, she's behind (physical, motor, cognitive..you name it). Her delay is to varying degrees but there is definitely a need for some intervention which is why we are starting with the PT while we wait to hear back from the EI team.

It's hard to sit there while your beautiful child's 'delays' are listed out to you as plainly as one places an order over the phone for take-out. This is not to fault the therapists who led the assessment who were deeply professional and compassionate. In fact, it wasn't until out conversation was nearly over that I realized the bulk of it was about itemizing Annie's 'delays'. I can only imagine how hard this is for some families to hear. However, we see this as a benchmark -a starting point- and nothing more. It can only go up from here.

More to come as we wait to hear back on Annie's eligibility for the program.

Not so into the horses...

Last weekend we cheered for our niece at a horse show in NJ. She did so wonderfully -horses and eventing are big in Elly's family so it's nice to see the Daugherty side enjoying this as well! Unfortunately, after our Christmas escapade at Gran's horse farm and this visit this weekend, we are learning that this is a real trigger for Annie and she just does not do well in this environment. Annie returned to having some serious respiratory issues that we have been working through for the past several days. So, meds are back up: steroids and the medicine we use to control the wheezing and coughing. We seem to now have it back under control but at higher levels of meds. It was a little close on Monday, but we did manage to avoid including the heavy hitting steroids (whew). So, we're getting the old lady back together again. Once she's is starting to improve, we will return to stepping down her meds to where we were before. It's not going to be right away but we're very thankful for our two month reprieve!

Looks like Annie is a determined to be a city gal -green acres are not for her!

Annie in action -- enjoy!