Time Flies

It is so hard to believe that Ella is almost finished with her early intervention services. She has been receiving services since she was just three months old. This week, we had what is likely the final team meeting. She transitions to the preschool program August 31st...and really that process has already begun.

Our meeting was really good. I would say probably one of the best we've had in terms of progress for Ella. She made huge gains in her motor skills. At our last meeting in August, Ella had literally just started walking. Today she is walking, jumping, and climbing. Jen and Linda have worked so hard, pushing Ella to reach her potential (even under great protest at times!) She reached all of the goals we set for her six months ago. This is the first time in nearly three years that she was able to check everything off the list as accomplishments. Her speech is coming along as well. This is where we are still seeing the greatest delay, but she is slowly making gains and we are confident she'll continue to improve. Michelle is constantly looking for new ways to help Ella communicate and her hard work is paying off. We have been using sign language for quite some time and now we are adding a picture system to our day as well to help Ella pick up more speech. She is a very visual learner and although we have just implemented the pictures, she is already showing us how much it will help her. Ella is also doing great in Toddler group and loving the routine that school gives her. She is a star student!

Getting ready for the pool!

Next up is the move to preschool where she will likely continue to have services. The biggest difference is that her physical therapy, special education and speech services will happen at school rather than in our home. We have a meeting soon with the school district to discuss how often she will have each service and how it all works out. The goal is to have Ella in a position physically, socially and academically to start Kindergarten in a few years at the same level as her peers.

This is a bittersweet time for us. We have some of the best therapists who have devoted so much time to Ella's development and success. They have calmed Jason and me down in times of insecurity and taught us to be better parents and really better people. It will be sad to not see them every week and be able to share every new accomplishment Ella makes. I can honestly say that our precocious two and a half year old would NOT be where she is today without the support of Jen, Linda, Michelle, Jess and Jamie.

I remember that first phone call in August of 2009 from Jamie, our service coordinator, telling us that Ella qualified for an EI evaluation. It was hard to hear, but thankfully I was aware of how beneficial this could be(thanks to Kristin who does this for a living!) and was able to keep an open mind and follow through with service. It is so easy as a parent to be in denial....to think your child doesn't need these services. At times it has been a tough pill to swallow, but the positive aspects of EI are amazing. We started off slowly...with just one visit a week. Now we have a packed schedule that at times seems crazy and exhausting, but I would never trade it. The benefits far out weigh any day that I am tired or frustrated with the lack of extra hours in the day. I will continue to advocate for these services for all babies who qualify. It's a true testament to how a little extra can go a long way!

The Gift of Gab

Ella's new trick is to use the box of wipes to
climb her way up on to the couch.

It is hard to believe that Ella has already been in the New York State Early Intervention program for two years! We had our IFSP (individualized family service plan) meeting this week. We meet with our team of therapists and our service coordinator every six months. It's a good time for everyone to catch up on Ella and make sure we have a plan. Each therapist provides a written report and we talk about any adjustments to her schedule that we would like to see. I remember being so nervous for our first meeting. I am a lot more comfortable now. There are no surprises for us at these meetings. Jason and I are pretty involved in Ella's EI program. One of us is always home when our therapists are here. We try and ask lots of questions and follow through with what they work on with Ella.

This meeting was especially exciting because of the tremendous progress Ella has made in the last six months. Some of our goals in February were to have Ella moving independently (crawling or walking), feeding herself, pulling up on furniture, exploring her environment. This was the first time we were able to check multiple items off that list as accomplishments. She is still a little behind her peers in motor skills, but she is literally doing something new and getting stronger every day. We are relieved and excited....and now even more focused on her talking. Speech is the area where Ella is still struggling. This is where the biggest delay remains. Ella did not get my genes when it comes to gift of gab! She has recently started using more words and communicating better, but we have a lot of work still to get her caught up. The ear tubes have helped a lot and we are seeing really promising qualitative changes. Hopefully it's just a matter of time before we start to hear more words.

Baby Ella "practicing" her PT in August 2009.

Ella has come such a long way since that first visit for her evaluation in August of 2009. She was so tiny and Jason and I were so clueless. We have always an open mind though and I truly feel that has helped us navigate the world of EI and get the best possible services for Ella. We started off with PT every other week and speech therapy every other week....wow has that schedule changed! Ella currently has One hour of land PT, two half hour pool therapy sessions a week, and three speech therapy visits. We are also adding toddler group (a two year old preschool program) in September. It keeps us busy, but the services work and have helped Ella reach her best potential. With any luck I will have a blog post titled "Chatty Cathy" in the near future. :-)

Kuckerrrrr!



Poor Tucker...he is always so tolerant of Ella!

 For 2 days now all Ella keeps saying is "KUCKERRRR"....it took a bit to figure it out, but now we are pretty sure she is calling the dog (who's name is Tucker!) She shouts KUCKERRRR (drawing out the RRRR) and then butt scoots her way over to him. She loves her dog. She is always trying to kiss him and pet him. She tries to lay on top of him and just a few days ago I caught her sitting on his belly bouncing up and down. Tucker is such a good sport and takes this abuse in stride even though inside Jason and I are pretty sure he hates life!

Ella's new pet name for the pup is pretty cute. I am sure it could be worse given the many different letter she could replace the "T" in Tucker with. It's also pretty significant that Ella is calling for him. This is probably the first time she is using words to get your attention. She says "momma" and "dadda" and will greet you with "hi!" when she sees you, but her speech has been delayed and the words she does say sometimes come out sounding not exactly how they should. Sure this is pretty typical of a toddler to not always repeat things perfectly, but our speech therapist wanted to have Ella's hearing checked out anyway. It's pretty standard to have a hearing test when a child is receiving speech therapy services. I am so glad we took Michelle's advice.

Ella's hearing test came back a little below normal. We met with an ENT to try and find out why. She has only had one ear infection in her 2 years and we know she can hear us (most of the time). It turns out Ella has fluid in her ears that won't drain. The doctor suspects what Ella hears sounds like what we would hear if we were underwater. It's usually more common with kids who have chronic ear infections, but not always. The best news is that it is treatable. Ella is scheduled to have tubes put in her ears on Thursday. It's a relatively routine procedure. The doctor says it should take about 10-15 minutes and the results are pretty instant. She told us that in most cases kids are already hearing better before they even leave the hospital.


Can you hear me now? Ella loves
to pretend to talk on the phone.

Of course there is always a level of anxiety when your child has to have surgery or undergo a medical procedure. Jason and I have been through a few stressful tests and events at this point, and it doesn't ever get easier. However we are so optimistic and excited for Ella to be able to hear us clearly. We can only imagine (and maybe a little nervous) about what will come out of her mouth. Maybe Tucker will actually sound like Tucker...but even if it doesn't, we can live with KUCKERRRR!

Nothing But The Best...

We started Early Intervention with Ella when she was three months old. We were referred to the program because of Ella's time in the NICU and her genetic diagnosis. Early Intervention is by far one of the best services that is offered to families in New York State. I have seen first hand the positive effects of one on one therapy in a home based setting.

We have three amazing therapists that have become a big part of our lives. We see them several times a week (most times more than we see our own families). Jen, Michelle and Linda help Ella with so many things, and they also do a great deal to keep Jason and I sane!


This is Ella when she was about 9 months old, working hard with Jen
on the medicine ball. Don't let the smile fool you!

Jen is Ella's physical therapist. She comes to our house once a week to help Ella get stronger. She works on things like walking, sitting, standing, and balance. Jen has the patience of a saint. Ella isn't always happy about working so hard, but she muscles through...with Jen always there to push her. Jen also helps Jason and I with techniques we can follow through with every day. Jen is a great teacher and we often say we would be lost without her guidance.

Ella and Linda at one of her first pool sessions. So funny to look
back at an old photo and see how much Pnut has grown!


Linda is Ella's pool physical therapist. She sees Ella twice a week at a therapy pool not far from our home. We started aqua therapy when Ella was about 8 months old. She LOVES the water. We have seen great progress too. She is much stronger and a lot more confident. We usually see Ella's progress in the pool translate into accomplishments on land a few weeks later. For example, Ella was walking independently in the pool for several weeks and then eventually had the confidence to give it a try in our living room! Linda is great with Ella and is always looking for new techniques to give Ella the best treatment.

Ella working on an art project with Michelle.
 Michelle always has a new activity to help motivate
Ella to make new sounds.

Michelle is Ella's speech therapist. She comes to our house twice a week to work on a range of things from talking of course, to sign language, and feeding. Michelle has given us so many great tips and suggestions. Jason and I have learned to use sign language to compliment speech. Ella uses several signs regularly. She is also starting to talk a lot more. It's amazing. Michelle is so much fun and seems to always have answers to our questions. She gets so excited when Ella has a new word or sound. She works Jason and I hard too...we frequently get homework!

Jen, Linda and Michelle are the best of the best in our eyes. We have so much respect and admiration for what they have done not only for Ella, but for all of us. I like my job, but these three women LOVE their jobs. It's not always easy to deal with a toddler (and one who is stubborn at times), but they never give up or show frustration. Although Early Intervention is only for children up to age three...I have a feeling we will have long lasting relationships with our therapists!