Help Me Grow ....

Today is a sweet but somewhat bitter day.

When my son was diagnosed with Noonan Syndrome in December of 2008, he was only 5 months old, our pediatrician encouraged me to contact the county agency "Help Me Grow" for some assistance and early intervention with Donovan.

Donovan spent the better part of his first 5 months not feeling well because he refluxed constantly.  He had a series of colds, a couple of ear infections and just felt less then stellar.  Developmentally, he seemed okay but he leaned a lot to the right side.  He also had a droopy eye and it seemed like maybe his right side was weaker than his left side.  My first thought was that he had a neurological issue.  So when the cardiologist wanted him tested by the geneticist to see if he had Noonans and it came back positive it answered some of these questions.  Like why he had the droopy right eye and why he leaned to the right.

When Donovan was 6 1/2 - 7 months old,  he was finally evaluated by Developmental Specialists from the county's program "Help Me Grow".  They determined that he needed some help by a Developmental Specialist and Occupational Therapist.  In the beginning, they would visit every 3-4 weeks and then eventually we got on a "schedule" where they would come out to visit once a month.  Today was our last visit with our Developmental Specialist and our Case Coordinator.

I remember the first day when Pam, the Case Coordinator, walked into my house.  I cried.  I cried because I was scared, nervous, worried and flat-out overwhelmed with the hand I was dealt.  It took me a long time to come to grips with my child's "imperfections" and "struggles" and it just solidified reality -  "mommy-hood" wasn't going to be a walk in the park.  Pam was awesome.  She listened to me, she let me cry even when I felt so stupid crying in front of a total stranger.  She walked me through the process and introduced me to a more calm and enjoyable life, just by being a good listener and helping me through this process.  She truly was a comfort and a guardian angel!

We lucked out, Cindy was our Developmental Specialist and she just made herself right at home the first day she arrived at my house.  Donovan was such a "mommy's boy" but warmed up to Cindy in no time and often waited by the front door when he knew she was coming to "play" with him.  I tried to plan Donovan's therapy visits when his sister was in school.  There were days when Norah was sick and it was "therapy" day for Donovan.  She met Cindy and fell instantly in love with her.   She would be so bummed when she knew Miss Cindy was coming to visit Donovan and she was going to be at school.

Donovan had an Occupational Therapist, Marta, for about 7 months.  We got him to "walk" and Marta's work was done.  She was instrumental in getting him to develop his gross and fine motor skills.  Once he stayed "well" he developed by leaps and bounds.

Donovan's development started out slow.  He was a little behind his peers in the beginning, but much of this was attributed to the fact that he was not feeling well.  He had been in the hospital twice because of respiratory issues.  The first time, pneumonia and the second time was from RSV.  Both hospitalizations were within 4-5 weeks of each other.  Turns out, he was having "breathing" issues because of his reflux and because of asthma.  Reflux and asthma often go hand in hand.  When a child doesn't feel well, they don't develop as well either.  So once we got him feeling better, he managed to catch-up and exceed expectations.

A year or so ago, Donovan was well ahead of where he needed to be developmentally.  His goals were met and Cindy and Pam were ready to close up his "case file".  I started to tear up.  I told them they couldn't leave just yet.  I wasn't prepared for this quick exit.  I needed another month, could I have just one more month?  They both agreed that one more month was fine, in fact, technically they could keep his case file open until he turned 3 years old.  So they both agreed that they wanted to wait until he was 3  years old to close his file.  Phew!  I dodged that abrupt exit.

I felt bad that I was having them come because Donovan was doing so well developmentally.  But then, he stopped eating in early January.  It was proof that I still needed their intervention.  I needed them to help me stay sane and monitor my child as we walked through this "feeding issue" journey.  I couldn't have done it without their "parent and professional" knowledge.  They helped me identify what might be the problem by probing me with questions.  Although they didn't solve the problem, it was nice to have someone "hold my hand" when I was feeling beaten-up, frustrated and severely worried.  It was nice to know that someone besides me, my husband and our families truly care about our son's well-being.  When Donovan was hospitalized, Cindy stopped in twice to visit him.  Instead of canceling his "therapy" session, she showed up at the hospital.  She also called me every couple of days to see how her little buddy was doing.  Gestures that meant the world to me and my husband.  She truly went above and beyond!

I built a friendship with these ladies.  They have no idea how important they have been in my life over the last 2 1/2 years.  I will miss the monthly visits.  I will miss our one hour together were we talk about Donovan and how he's doing, let him play with "cool toys" and strategize for the next month.  I'll miss having that validation that Donovan is doing well developmentally.

I still wonder about two aspects of Donovan, his speech (he stutters a fair amount) and his behavior (he's very bull-headed).  Two things I'll have to monitor and hopefully get some insights on when he goes to preschool in September.  I know the preschool will keep a watchful eye because they know his history and want him to be the best he can be and succeed.  So I know I'm in good hands even with this transfer from home therapy to preschool.

Donovan passed the city school's "educational/developmental" evaluation back in April.  He does not require any developmental intervention.  His gross and fine motor skills are were they should be.  He is intelligent.  He's perfect!  If you would have asked me back  in January 2009 if I would ever think that Donovan would be "perfect", I would have had some doubts.  I know that the assistance we received from "Help Me Grow" was very instrumental in making my little guy "perfect"!

On Thursday, Donovan will turn 3 years old and that is why today was our last visit with Pam and Cindy.  I'm going to miss Pam and Cindy very much.  However, I vow to keep in touch.  I can't dismiss two people who made such a great impact in my life.  They're stuck in my heart forever!  Thank you ladies for helping me be the best mom I can be!

Colleen