Expect the Unexpected

I checked out for awhile.  In September Bonich left for college in California, Mason and Reagan started school and they both had a number of medical tests, evaluations and even a few day procedures done at hospitals.  It was a pretty dark month but I feel like I can finally see the light.

After all the testing and evaluations, we have finally got some clarity on what our little gal Reagan has going on.  I think I'm finally ready to share.

Hearing.  Reagan has been evaluated as having moderate to severe hearing loss.  The hearing loss issue is something that we were not expecting.  We knew she had ear issues, chronic ear infections, but to have actual permanent hearing loss was something that I was not ready for.  It caught Dan and I both off guard.  I'm not sure why.  The doctor originally thought that she had fluid build up.  During the procedure for ear tubes it was discovered that she actually has very large holes in her eardrums so the tubes are not an option.  Patching them up at this time is not an option either.  We are moving forward with a test called an ABR to see what Reagan's brain can hear.  She has had three audiology tests and they have each had different results.  This process has been frustrating and has tested me.  The appointments for the testing and procedures have been scheduled weeks apart and me being the Mama Bear that I am, I want my girl to hear now so that hasn't been sitting well with me.  I hate waiting.  I so badly want her to hear normally and everyday that goes by all I can think is that it is one more day that she cannot hear correctly.  Once we have the ABR completed we should know once and for all what Reagan can really hear and how to move forward with getting her amplified.

Speech:  Reagan is very delayed and we knew that.  It was not a surprise when we got her and saw and heard her but when we got the evaluation back I was shocked and scared.  She has been evaluated at having the speech of a 19 month old.  Reagan is 5 years old.  I know it's common for an institutionalized child to be delayed but 19 months old?  The diagnosis of her hearing issues does explain some of her speech issues.  I honestly had no idea that her speech was that far behind but once school started I saw the difference and it hit me.  After dropping her off at school her first day I got in my car and cried.  She is so far behind.  Am I the Mama to help her get caught up?  Will she ever even get caught up?  Am I up for this?  She has such a long road ahead of her.

DiGeorge Syndrome:  I first heard of DiGeorge (aka 22q11.2 deletion)  last year when our cardiologist told us to look it up.  We had given him Reagan's medical file and asked him to review it.  He told us to research DiGeorge because it is common in patients with Reagan's heart condition, Tetralogy of Fallot.  DiGeorge patients can have a very distinct facial features.  I knew just by looking at Reagan's pictures for the last year that she did have some of the facial characteristics that are associated with DiGeorge. We got Reagan's diagnosis on September 14, 2011.  Reagan is missing part of her 22 chromosome.  It was the last of all the results to get returned but of all the results this was the one that was not a surprise but yet it was the hardest to take in.  For me it was heart breaking to have on paper that Reagan is different and may not be a normal child.  I couldn't even talk to anyone in the beginning without crying.  The diagnosis does explain so much of Reagan's major issues; her speech, her ear infections and her hearing problems.  It is common for a child with DiGeorge  to have learning disabilities.  As a student in school Reagan is delayed, it's very apparent.  It's also apparent that she processes information and learns differently than her peers.  Right  now it's wait and see.  To see if her learning is because of her hearing, the fact that she has been institutionalized for the majority of her life or if it's the DiGeorge.

Last year after we talked to our cardiologist and he mentioned DiGeorge, Dan and I came so close to NOT moving forward with Reagan's adoption.  I was so scared.  We called our agency and told them we needed more time.  I was struggling with moving forward.  My heart wanted her but my mind was questioning if I could handle it if she was diagnosed with the syndrome.  It was a conversation that I had with my dad that  changed my thinking about being the mother of a child with very special needs.  He told me not to make a decision based on being afraid.  When he said those words I had an overwhelming sense of peace.  I knew without a doubt that Reagan Joy Qingqing was to be my girl.

Today when I think about all that I could have missed out on by not being the mother of this amazing, loving, happy, sweet little gal that scares me.  I am so blessed to be her mother.  She is a constant reminder to expect the unexpected.