The Story of Lillian Part IV

We were home but she was a hand-full.  No it wasn’t the diapers or feedings it was the fact we had to every other day go to our pediatrician and get her blood pressure taken (infants do not like having their blood pressure taken).  so we got on fairly close terms with all the nurses and staff at the doctors.  She also had to visit the Cardiologist regularly as her heart was not completely back to normal and her blood pressure remained high although she was quickly off the medication as even the smallest does was dropping it too low.

On the home front we moved into our new apartment and I got more hours at work, things looked to be going our way.  Nothing significant happened for months, we had doctor visit after doctor visit after doctor visit.  At 4 months we had our first visit with Dr. Bello at the Developmental Pediatrics.  He was doing a study on the development of children who spent significant time in the NICU and follow them for 1 year after discharge.  At 4 months she was rated as normal and asked to see us in 6 months for a final follow up.  The six months passed and at that meeting, she still tested at a 4 month level.  She had made not noticeable gain in development in 6 months.  At this point we scrambled with our pediatrician who suggested we get involved with early intervention through the Albany County Department of Social Services.  And evaluations were set up.

Dr. Bello also began testing her for everything under the sun, which required a significant amount of blood work (infants don’t like being poked with needles).  As we approached one year, she soon had therapists coming out her ears and all the blood work came back negative. 

We took a well deserved vacation with Sophia to Disney World in January and before we knew it, Lillian was one year old.  With no proof anything was wrong and she seemed to be making progress, we figured the delay was all related to her traumatic birth and she would outgrow it.  In December of 2007, she had stopped progressing yet again.  She is currently rated a 9 – 10 month old and she will turn 2 on January 18.  She is more than just delayed, something is seriously wrong.  All signs point to some sort of genetic disorder, none of which are very good.  But we have already faced many challenges with her and this is just another ‘bump in the road’.  But more importantly she is there ready to be held and snuggled at all times, so I guess its really not that bad.

And Sophia, who though she denies it, I think clearly remembers what her sister looked like in the NICU prior to going to Syracuse and it has stayed with her ever since.  The two of them are closer than ever.  Just recently Lillian was given this plastic hippo you can ride and it sucks up blocks.  My wife tried to get her to use it, the therapist tried to get her to use it and all she would do is cry.  Sophia comes home from school, picks up Lillian plops her down on it and the two of them spend the rest of the evening riding around the living room, Lillian having a ball.  In many ways she is typical of a sibling with a disability, she is mature well beyond her years and like many have become a parent far too quick.  She takes on way too much responsibility with Lillian, especially for a 6 year old.  Sometimes she forgets to be a kid and sometimes we as her parents forget she is a kid.  But its just another challenge we face and I know we will get through it.

Thanks to all of you for giving me this chance to vent, it was actually a lot easier to write than I thought it would be and soon I’ll have some better posts up about happier things, such as birds and video games and who knows what else!

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