And, then in August...

And, then in August...

We continued to push along with Elizabeth.  We watched her grow slowly.  We rejoiced when she finally made her way onto a real growth chart, not one that was adjusted for preemies.  We watched her struggle with ear infections, chronic respiratory issues, and made many trips to and from the doctor's office.  Her pediatrician, Dr. Vigliotti, is amazing, and he always took time to listen to us and to Elizabeth's symptoms to help get her the care that she needed to get better.

We started Early Intervention when Elizabeth was 4 months old.  We continued to add to her team to meet her needs.  Early on, I felt that Elizabeth did not see very well.  Other family members, and I, had noticed that she also seemed to have an eye that didn't follow like her others.  She would also sometimes cross her eyes.  Her EI team members were also concerned about her vision and tracking.  So, we started to see an Ophthalmologist at Children's Hospital in Pittsburgh (CHP) in November of 2013.  The Ophthalmologist noted that Elizabeth was farsighted, but she felt that it was normal for her prematurity.  So, there was going to be no treatment at that time.

Elizabeth continued to be slow on her developmental trajectory.  She was not reaching developmental milestones at target ages and continued to develop on her on timeline.  It was clear that she had to work hard to achieve milestones.  She also clearly had issues with muscle tone, and she often seemed "floppy."  Elizabeth was diagnosed with low muscle tone, Hypotonia, early on.  This explained why it was difficult for her to reach many gross and fine motor developmental skills and why she had to work so hard to do so. 

We continued to take Elizabeth to her well visits to check in with Dr. Vigliotti.  In between visits, we were continuing to struggle with multiple infections, respiratory illnesses, swallowing issues, etc.  We because very knowledgeable on cough sounds, and what to do when a cough sounded a certain way.  We made frequent trips to the doctor's office and several trips to the pharmacy. Elizabeth, despite her issues, has overall been a very pleasant baby.  She also is very motivated, curious, and determined, which are all reasons why she has made such progress since her birth.  She would have periods where she seemed to be feeling well, and we cherished those times.  We celebrated her achievements.  We especially celebrated her "First" holidays with decorative tutus and pretty dresses.  We continue to do those things.  Elizabeth LOVES to be dressed up, and she loves to wear her crown!

We celebrated Elizabeth's first birthday in May.  It was fun to celebrate the first year of life of our miracle baby girl.  Our Princess had reached an enormous milestone of turning one-year old.  We had a party for her at my mom and dad's house.  We invited all of our family, friends and special people who have been a blessing to us on our journey with Elizabeth.  It was a great day.  We celebrated Elizabeth's first year, the blessings that she has brought to our life, and the miracle that she is on that day. It was a day full of happiness, and of course a crown and a fluffy dress.

We went on a family vacation in early August.  Our first stop was in NYC to visit Jason's brother, Billy.  Then, we went to Seaside Heights, NJ to stay with my cousins, Brian and Rosanne and their son Nick, at their beach house.  We did a lot of fun things at both locations.  It was great to spend time with family that we don't get to see very often.  Celtan, especially, had a great time. On our way home, we stopped in Hershey.  It was a lot of fun just to get away. 

The following week, we had several appointments scheduled for Elizabeth.  We were consulting with another Ophthalmologist regarding continued issues and concerns with her vision.  We had a 15 month well visit with Dr. Vigliotti, and she had a follow-up evaluation with the Behavioral Health/ NICU Clinic at CHP.  This week is when we hit a wall. 

Up to this point, it was a widely held belief among Elizabeth's doctor's and team that her overall developmental delays, hypotonia, frequent infections and other issues were due to the fact that she was born prematurely, had growth issues in the womb, and respiratory distress at birth.  The series of doctor's visits the week of August thrust us onto a new path, a sudden understanding, that all of these issues that we had been addressing and coping with for the past 15 months were likely beyond simply being caused by prematurity.  The Ophthalmologist referred us to a Pediatric Ophthalmologist, because he felt that she did need glasses.  The Psychologists in the Behavioral Health Clinic conducted a developmental evaluation using scales and checklists, which determined that she was significantly delayed across almost all of the domains, except that she had a borderline delay on the cognitive scales of development.  Dr. Vigliotti also noted that she was continuing to fall further behind in terms of development.  She also had a follow up for her bilateral ear tube surgery that was performed at CHP.  After failing two different hearing screens, she finally passed a newborn hearing screen much to my delight. 

This string of appointments were very frustrating, upsetting, disheartening.  Would there still be time to get her the help that she needs?  What is it if it isn't prematurity causing these delays?  Why Elizabeth?  It was recommended that she be evaluated by the Cerebral Palsy Clinic at CHP to have them weigh in on her hypotonia and developmental delays.  So, I made the appointments for the CP Clinic and the Pediatric Ophthalmologist.  They were scheduled for September, and in the meantime, we would have to continue with therapy and wait.