A Window of Opportunity

I have ‘joked” to a few people that it was like something in Corrigan’s brain was switched to “on” when he was medically sedated for his repeat endoscopy earlier last month.  I think that I keep hoping that they will agree with me and share their observations. Hasn’t happened yet.  Yet.

I noticed it the very evening after his procedure.  Even though he was cranky, likely a sore throat from the scope, and he was off of his normal daily schedule and at a relatively unfamiliar house, he was different a few hours later.  He seemed more clear for lack of a better word.

For week’s prior to that following morning’s check up, I had scratched down my concerns and fears onto a piece of paper so that I would not forget everything I wanted to bring up with Corrigan’s geneticist. The weight of so many worries had finally accumulated to the point that I was ready to kick them up and see where the dust settled.

Oddly enough, when I was reciting that list in the office that day, I suddenly felt like I was lying. I already knew that Corrigan was different than he was just days before and each of my former concerns felt like a permanent indictment of his intelligence.  Each conversation related to something I had listed, the helpful back-and-forth between physician and concerned parent, seemed as though I was giving the geneticist the file folder, perfectly labeled for her, by which Corrigan would be judged from that day forward.  She got the message, she shocked us by announcing that she thought his IQ would be low. Low.  The dust had settled alright.

I wanted to take it back… to change my mind and ask her about the fog. I’ve used that term before in conversations with her. I have noticed the disappearing fog before, usually on the second or third day of hospitalization. When he had a few days of powerful ammonia scavengers being all “special forces” on his system and his labs were coming back with numbers so low it seemed unbelievable. Impossible. Normal.

But why?

Maybe it was because the three of us (Mark, the anesthesiologist and myself) formed a cocoon of love and faith around Corrigan, while all singing “Jesus Loves Me” as he slipped under…maybe we impressed God with our focus on Who really controlled it all in that surgical suite(Go Jesus!) Or maybe I was just overtired. Maybe I was in instant denial?  Wishful thinking? I didn’t mention my theory.

By the time we got back to our home in Mountain Maryland, Mark and I had found ourself chattering happily about some of the new things that we had noticed Corrigan doing.  When we pulled into the driveway, we realized he had chattered happily from Baltimore to our doorstep. Without fuss.  That was big.

In the days that followed I was amazed at how bright he seemed. I do not mean in the sense of intelligence but in awareness.  Out of the blue, the elusive, but much prayed-for, eye contact was taking place for most of the day. He was laughing at things and looking for our expressions. When he was naughty, he would search the room to “read” if I were angry or not from the shape of my mouth…the furrow of my brow. He was making connections.

After we returned home, he would pull himself up into my lap and I would sit so still, afraid to move as if he were a butterfly and I was the lucky recipient of a once-in-a-lifetime visit from a Monarch on my outstretched finger.  After five…ten minutes of the cuddle continued I would relax my shoulders and drink in his presence.  He let me rub his back, scratch gently up his arms until he got goosebumps, softly swipe the hair across his forehead over and over.

He was here.  It almost felt as if I should whisper, after 27 months, “Finally…”

(to be continued…)

I am a contributing author over at Living with Special Needs.com and this was my inaugural post. Come over and learn more about Living With Special Needs!

6 thoughts on “A Window of Opportunity

  1. I don’t see how anyone could say Corigan’s IQ is low. He looks like he is doing all things that other children do at that age. He was even problem solving big time to get into food in one picture. When babies and toddlers have complex medical problems that require multiple procedures and hospitalizations they usually take a little longer to catch up in different areas. They may have strong sensory issues or aversions and social delays similar to an autistic child. But, overtime they usually come out of the fog. Of course I only see the pictures and I am not experiencing reality. But, he looks pretty smart to me!!
    BTW…Our DD had general anesthesia a few weeks ago. I was expecting a long hard day. After recovery, she was happier and brighter and more advanced than she had ever been. We could not believe it. We also felt the fog had been lifted! That is really weird. She will be under again this Tuesday so I will be able to make another observation on all of this.

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    • I’m sitting in the bank,reading this on my phone, and Jennifer I thank you so much for your comment full of wisdom. You almost made me cry…I appreciate the hope that you just gave me. I’ll be clinging to your words all day. Thank you!!!

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  2. What a beautiful sweet boy you have. Your post is so touching it makes me want to cry. My son was born with Citrullinemia too. He had a liver transplant when he was six months old. Please don’t take this question the wrong way because it is not asked in a judgemental way at all, but is a liver transplant a possiblity with Corrigan? When you talked about the moments of the lifting fog, it breaks my heart because I want you to have that all the time. I know it is such a personal decision, but for us, life is so much easier than before the transplant. Our son’s ammonia was becoming more unpredictable, so for us we felt we really didn’t have a choice. I felt like he was a ticking time bomb. I will never forget the nurses face when he came out of surgery. I asked what is ammonia level was and he just laughed and said they don’t even check it as long as the liver is functioning well. What a feeling. Things can still go wrong with transplant, but it is ususally not with the same urgency. I just wanted to ask and let you know there is another family out there that admires your strength and is here to answer any questions.

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    • Thank you Kammy for your comment! I appreciate you being willing to talk to us about transplant! Corrigan has been pretty stable for over 14 months now. The transplant was talked about earlier on in his life but Hopkins does not seem to be big on the transplant idea unless it is absolutely imperative. Corrigan has been hyperammonemic several times but he responds so quickly to meds (in all but one instance, his ammonia was back down to acceptable levels after the 90 minute bolus of emergency meds) that we chose to wait and see. Now, we are enjoying a really long period of metabolic stability and there is reason to hope that he will continue to do so well over the next few years.

      We never know though…we may find ourself transplanting one day…and we are not against it. We are just hoping to manage this for a lifetime without it if possible.

      Is it the right choice? Honestly, we dont know. We get conflicting information all of the time from both families that have transplanted successfully and also from those that have had terrible complications and have either passed away or are waiting on 2nd or 3rd livers. We trust Corrigan’s medical team though and know that if they feel transplant is in his very best interest they will let us know without hesitation.

      I am so happy that your little one is doing so well!!! We have friends that have experienced wonderful transplant results and it does make me slightly jealous, to be honest. It is such a hard choice.

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  3. Pingback: leave the window open and the crazy just might come in | Mooneyequalsmc2′s Blog

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