Thursday, September 12, 2013

The dreaded day we hoped would never come...

I feel silly updating this with the news we received today.  But the intention of making this blog was to keep people updated on Lil Bill.  So updating I will do.

Well today was an informative day.  We went to a new pediatrician.  Our old pediatrician recommended that we see someone else for primary care for Lil Bill, this new doctor does primary care for medically complex kids and kids with special needs.  I was hesitant on making the switch, for various reasons.  I liked our old pediatrician  he was always good to us, he called us personally a couple times.  Everyone from the nurse who answers phones and deals with their faxes, to the doctor, and the nurse who took vitals knew us because of us coming in so much, because of paperwork going back and forth, I felt comfortable.

The other reason I was hesitant was because, well I do not suppose its any parents dream to take their child to primary care at a special needs and medically complex clinic.  I guess a part of me was still in denial, that Lil Bill's issues were not going to be long term.  Well today that denial burst.  I am sure it will come back.  Around my son, their are several layers of denial.

Today we met with this Doctor.  Wonderful man, probably one of the most polite, caring, personable, and experienced Doctors that I have encountered with my son.  He spent two hours with us, talking with me and Billy and interacting with Lil Bill.  He truly listened to us and he was honest with us as well.  It must be so hard for such a nice man to be in his career choice, working with medically complex children and special needs children.  Because to be so nice, and have to tell parents upsetting news about their child must be difficult.

Today we were in that difficult situation.  Let me first start off by saying me and Billy have been being prepared for the day like today, since a couple days before Lil Bill was even born.  And after that day too.  Different doctors on different occasions, they have all been planting seeds in our heads and trying to make the blow that came with this day lighter.  And for that I am grateful because it worked in some sense.

Today the Doctor diagnosed Lil Bill with spastic quadriplegic cerebral palsy.  Up until now we were being told he was too young to diagnosis and we would wait and see.  He disagreed.  He said knowing what Lil Bill's brain scans look like, and knowing what he is showing us now and his whole history he does not think he is too young.  I thought I was handling this conversation pretty well, until he looked at me with concern and said in such a caring voice, 'do you need a tissue?'

Even though we have been prepared for this I cannot help but feel sad. And scared.  Lil Bill has hearing aids, we found out yesterday he is near sighted and he is almost at the point he will need glasses, he has different airway issues, sleep apnea, bpd or chronic lung disease, he has all these issues.  And now this too.  We have been prepared for all this issues, being told they may happen, but its easy to think that, only one will happen, or that we will be the exception.  But we aren't.  We have beaten the odds of survival, given a 25 percent chance to live, but we have not beaten the odds for other issues.  I cannot help but feel guilty every time, cause everything can be traced back to him being born early.

But I remember when he was a couple days old, and they told us to get involved because that might be the only time we had with him.  And I remember hoping so bad that he would pull through, no matter what came with it.  How can I stay feeling sad?  I got what I wanted.  After losing Aiden and everything we went through to have Lil Bill make it to a viable gestation age, and seeing what looked like torture at some points to keep him alive, how can I not be grateful?  We all made it out alive.  I may have a medically complex and developmentally delayed baby boy, but I have a baby boy.  I have a precious, happy, energetic, strong little boy who finds so much comfort in my arms.  What a miracle that is.

So now with this diagnosis, nothing really changes.  We are already physical therapy, occupational therapy, and feeding and speech therapy.  We already do stretches with him multiple times a day, so we are just still waiting and seeing what Lil Bill is going to do.  I found a place in Canada that does an intense therapy with children with CP and other issues, I asked the doctor what he thought about it. He told me not to run off to Canada just yet.  He said Lil Bill might not need it.  What a relief that was.  I have hope, the doctor has hope, we do not need to do something extreme like that.  He said Lil Bill is still so young, he has plenty of time to show us what he can do, learn and develop at his own pace before taking interventions like that.  It was really nice to hear.

I am one to kind of look at the negative side of things, and Billy the positive.  Finally, I feel like I can see the positive like Billy.  I am grateful for my son and hopeful.  He may be able to do more than we believe or think.  And I feel empowered to help him get there.

So spastic quadriplegic CP is when all four limbs have tight muscle tone.  It is a scary name, to me at least, but the outcomes of children vary.  We still do not know what path Lil Bill will go down.  Oh, I almost forgot to ad, they want Lil Bill's weight gain to slow down! They said that in the height/length percentage he is in the 95%.  They are changing his diet.  I thought, what a funny problem to have.  All his life we have celebrated every ounce he has gained! And now they want him to slow down, life is funny!

So the last thing I will say is that I went to therapy a couple times when Lil Bill was in the NICU.  The therapist was talking to me about raising a child with special needs.  She said that the feeling I will get when he learns to feed himself will be the same feeling another parent gets when their child scores a goal in soccer.  I believe that today.  Our accomplishments might end up being different from others, they may not but they very likely might be.  But they will be ours, and they will be beautiful and wonderful.


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2 comments:

  1. Wow cass. You and billy are such strong and jnspiring people. I don't know if I could handle everything life has thrown at you!

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  2. My heart breaks for you and your family. But am praying for strenght, courage and lots of miracles for your baby.

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