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!

Remember us?

Sorry we have taken so long to post any updates. Annie is holding strong although we were quite anxious to get her an H1N1 vaccine. Now that Luke and Annie have been vacciniated (Annie was at risk of getting severe disease if she was ill) we are all breathing a little easier. In the past several months, Annie has taken her fierceness to a new level. She is walking and starting to talk (see video below). She is still recieving daily meds to support her weak lungs, speech therapy and physical therapy. She is just such a rock star and we are so proud of her. She has come so far in this past year - we were in such a dark place a year ago. Rock on, Annie!

Annie roars!

Annie playing with Luke's new toy tiger after a day at the American Museum of Natural History. Hear her Roar!

Annie enjoys Luke's bday party!

Annie's bday present for Luke -standing! No hands!

Fever saves the day

So, Annie spiked a fever. This ended up being a blessing in disguise. The antibiotics have finally broken through and her breathing has made dramatic improvements. This is a real relief since the heavy meds didn't really seem to be having a large impact. Whew.

Let go, let God.

It's been a tough week. Annie's breathing continues to be strained and the meds we were giving her just weren't kicking it. She is now on her third day of the tougher steroids and, when you are in it this deep, it's just hard to tell how much she is improving. I just can't believe this is happening in August. It's going to be a long winter.

Last week, I came home after a tough doc's appointment with Annie. The toughest part being the option I want, to find the miracle cure that will just make this all go away, doesn't exist. There isn't a miracle drug and we are resorting to doing our best. So, on the heels on this disappointing dose of reality, I run into our broker (oh yes, we're selling out apt) and strike up a conversation. She has been through some challenges of her own with their (not so little) guy and she is as equally Type A as I am. She shared that when things are tough, she resorts to this prayer/mantra/release: "Let go, let God". It has become something I have held on to tightly these past few days. I share it with all of in love and hope that perhaps we can all, event the Type As among us, release a bit of that fear to someone/thing greater and get on with the stuff that we can fix.

Honeymoon over?

Poor Annie developed a cough two weeks ago and it's getting increasingly worse. I think her (incredibly awesome) pediatrician nailed it today when she replied "crap" after I updated her on how Annie was doing. We are back on all of our meds and debating putting her on more. Since nothing really seems to be the slam dunk when she is having a tough time, I struggle with giving this little thing so much medication. It's a challenge but we continue to be so thankful for our ever-expanding team of docs and therapists who join us in routing Annie on to better health.

Despite this, Annie is her usual crazy self. She spent the day out in the sunshine at the summer house and is now cuddled with me on the couch trying to get some rest. It's been hard for her to lay down and sleep so I suppose I will accept the burdensome task of holding this sweet little girl and watching her sleep. Bummer.

Annie hits the Today show!!

Today is Be A Hero for Babies Day and Annie woke up bright and early to help March of Dimes and Farmers Insurance raise $2M in one day. You can help too! Farmer's will match your donation so you know what to do....

https://www.marchofdimes.com/howtohelp/farmers.asp

Da-Da

It's official. Annie has said her first word. Today, at a small diner in Yonkers. Annie looked at Steve lovingly and said, "Da-da". It was deeply moving. I teared up, Steve was moved, and Luke looked proudly on at his little sister.

Then she looked at the lady in the booth next to us and said, "Da-Da".

Then the waitress, the guy walking by, the salt shaker...

Allergist

Now that Annie is 1, we were hoping to be able to run more tests to get a better sense of what has been leading to all the respiratory issues. We took Annie in to be allergy tested and it turns out that is not the case. It was actually a little disappointing bc that would have given us a bit more of a definition and an action plan. We are now left to thinking she is still working through having under-developed lungs. The nagging questions are when this will resolve itself and if there are alternative ways that can help her until her lungs get stronger. So, we will hang tough and keep at it. The wonderful news is that she is just doing wonderfully now and we have been able to remove some of the drugs she is on. Our greatest hope is that she can enjoy the summer without daily meds for breathing. We'll bulk back up again when fall hits but, for now, we are enjoying this honeymoon period!

Annie's birthday week: She's 1!

What a year this has been. We have only recently returned from a wonderful vacation celebrating Annie's birthday and the conclusion of a very tough year. Luke threw a birthday party for Annie, we visited the ocean, mini golfed for the first time and enjoyed the blessing of our friends and family. We are so grateful to everyone who has helped us through what is easily the most demanding year we have ever faced. We learned so much about the strength of family, our ability to cope and learn when the preemie roller coaster offered us countless highs and lows, our need to support other families so they never feel isolated when dealing with prematurity..the list goes on. We are so thankful that we walked hand in hand this past year with so many wonderful friends, families and a medical team that has given us the tools to get Annie through this first year.

Looking back is hard. I have to say that when May 27 hit it was hard to think back to where we were that time last year. I was so frightened and unsure of what Annie's future would be. I felt I had failed her and prayed that, despite my failure, she had the strength to get through. A year of countless challenges has followed. During that year, Annie has taught us that her medical challenges are mere technicalities. It is her spirit that warms my heart and pushes away those moments of guilt. She has faced every challenge with a smile and always that feisty spunk that was so apparent the moment she arrived in this world. We have persevered because of the joy that radiates from her. With that spirit fueling our way, we look to the future with strength and optimism and don't waste too much time looking back at those times of fear and uncertainty. Annie still has a long road: speech therapy, physical therapy, feeding therapy, allergists... obstacles that we will overcome with the strength and love that is freely given by Annie, Luke (who has done nothing but adore his little sister), his family, and all of you, our dear friends. Our love goes out to all of you. Enjoy these photos. The journey continues...

 

 

 

Birthday girl!

 

Annie's 1st mini golf

 

 

Team Annie hits the March of Dimes walk

 

Annie sits!

Our wonderful friend, Adina, just shared this photo of Annie at her daughter's bday party. I have to say, it took my breath away to see how far Annie has come when just one month ago she wasn't able to sit up. We will post more on the [Amazing] March for Babies soon but this, I felt, couldn't wait.

Getting ready to march!

There is still time to donate: http://www.marchforbabies.org/s_team_page.asp?seid=649053

We are thrilled that we are being joined by friends, family and (hopefully) some of our NICU friends. Thank you, Uncle Nate, for our awesome Team Annie and friends logo!

On all fours

Annie is really starting to make some progress (which I completely credit the PT with). She is now crawling very comfortably and starting to feel more comfortable standing if she can lean on a small table. It's wonderful to see her progressing so quickly and we will all keep up with encouraging her to try all these new movements!

Annie has also become a bit of an indicator for the pollen count. We have it under control, but she does seem to react a bit to the increased pollen count in the air. So, if you're wondering if it's high, we'll be sure to let you know.

Otherwise, we are gearing up for the March for Babies that is coming up next week. Team Annie is going strong and we have raised over $1000! Thank you to all of you who have supported us. If you haven't had a chance yet, we encourage you to join us in the walk, donate, give blood or even just give a hug to a family coping with prematurity. Let them know they are not alone and always feel free to share the blog if it can be of any help.

Here is our team site: http://www.marchforbabies.org/s_team_page.asp?seid=649053

March on!

Annie's first acceptance letter

We heard back from Early Intervention and Annie was found eligible. The process was a little taxing since it involves an evaluation that identifies all of the cognitive and physical delays that your child is experiencing. Annie is more than a 1/3 delayed in a few areas (primarily physical) so we were found eligible. It's hard to hear that your child is 'delayed' but it has been heartening to learn that we are not alone and so much can be done to help her right away.

Today we met with the team to review their assessment, articulate our goals for Annie and match her with the necessary services. She will be receiving physical therapy 2x a week and will have a feeding assessment. This is to address her 'low tone' and look more into why her speech is delayed (for those of who know Elly this is shocking that Annie is not inclined towards babbling). Annie has already responded so well to the PT we've provided her that I am so excited that we have committed, comprehensive resources supporting her development.

This program is truly a gift. Steve and I didn't really know what to expect and we were so pleasantly surprised. Rather than seeing Annie as 'delayed', Annie is seen as a source of potential and we are all working together to help her achieve that potential. Annie's team has just gotten that much stronger.

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!

March! (well, April actually)

Hi everyone. Our apologies for not being in touch sooner but we've been chasing Annie as she rolls around the apartment. Annie seems to be holding steady. She is still on the steroids which help her get through but we are not giving her anywhere near as much drugs as we had been.

We are currently going through the process of applying for Early Intervention which is a federal programs designed to help babies like Annie who have a developmental delay. We will certainly keep you posted as the process unfolds.

Meanwhile, we are looking forward to the spring March for Babies walk that will be hosted by the March of Dimes in April. The March of Dimes has made prematurity one of their primary areas of interest and we are eager to support them in their work.

Please consider making a donation or joining our team and marching with us. Help us help others who are facing the same fears that we have faced. Help us hope that there are less families struggling to understand the complications of prematurity in the future. All you have to do is click this link:

http://www.marchforbabies.org/649053

Love to you all.

Annie gets a personal trainer

Annie went to Lenox Hill yesterday for her assessment. She continues to do well but her tone is weak (Annie is still not sitting up). So...Annie should be starting physical therapy soon. I'm hoping that if she and I get on a good abdominal routine now we should look fabulous in our bikinis this summer!!

The Storm Abates..

It is with so much joy that we share with all of you that Annie has been well for over three weeks. We waited to share this with you until our impression was 'made official' by Annie's doctors. This week we have been to her pulmonologist and pediatrician. My favorite quote was her pulmonologist who said after listening to her breathe, "I don't believe it. This is just not the same baby." It's at times like these, when we can take a moment to breathe a sight of relief, that we realize just how scary it has been.

Too many days these past several months, our time with Annie has been spent counting down the minutes until she can have her medicine again. Praying that the coughing and gagging will stop. Scared because nothing seemed to be working. These past few weeks, we have tickled her belly and heard a hearty laugh. Played school (Annie and Luke are the teachers and Steve and I are the 'children') or watched her happily rolling and cooing on the floor.

It's not over and we know that. Annie could get sick again tomorrow but we will face that when it comes. For now, we celebrate the blessing of this happy, healthy girl.

We are so thankful to you, our friends and family, who have been unfailing in your support and love. Most of all, I think of (and thank!) our precious boy, Luke, who has done nothing but love his little sister with all of his might.

Next week we are back at the hospital when Annie was born for an assessment for developmental delay. We will be sure to post an update afterwards.

Love to all!

Happy New Year!

Well, we were running around with the baby caravan (why is it baby's have so much stuff?) for much of the holiday. Annie is still in need of frequent breathing treatments so she had her own bag of meds and equipment. We survived an ear infection for her on Christmas Eve (thankfully the doctor's office is always open!) and, unfortunately, Annie's breathing took a turn for the worse. We all most had to put her on some heavy duty steroids (she continues to be on one steroid) but she improved just in time. I would like to point out that our pediatrician, who went to great lengths to make herself available to us throughout the holiday, told me to put on my 'dunce cap' because I did not reach out to her soon enough when Annie wasn't doing too well. I was forced to wear the dunce cap for several days. It was bad. It has now been removed and I am back in her good graces (a place where I hope to stay forever -I don't want to get in trouble again!).

Good news is we are all doing quite well and even went back to toning down Annie's steroids a bit on Monday (we had to up them when she got sick). Let's see how long this will last!!! Holiday photos to come. Luke is a BIG fan of Santa.