I will always be 34th st.

As I wiggle "They're Real" mascara on my eyes, a very rare occurrence that I wear makeup these days, I'm taken back to when I would get ready for a day at Sephora. I hope that one day Andy can realize what his mommy did, and be proud of her. I used to dream of the day I would be in corporate, flying around the country to train others. My last few days at work I had taken over for a brand rep who was there sick and was teaching others how to use the products. I beam with pride when talking about my $500, $800 sales and how I worked at the center of the universe. Those skills have remained; they are manifested in how I teach others about who Andy is. And those are priceless. 

Gratitude

Yesterday we traveled to Rochester for another opinion. What I heard turned into the most humbling moment in my life. 

We saw Dr. Kwon. We wanted her opinion of the MRI's (she's reviewing and will call us back) and how she would have treated the IS had we been going to her clinic/when she would wean the Zonisamide. (We are currently going to start weaning in a week).

She told me that she had never seen a case of IS being brought to control as fast as Andy's. If he was seen by her, she would have began with phenobarbital and ACTH would have been the last resort after every other medication. She never uses Zonisamide. She also would have predicted a far poorer outcome then Andy has. She explained that this is difference between an older doctor set in their ways like herself and a younger one like Dr. Pugh in Albany. And they never would have known they weren't doing the best for him. 

How do I look Dr. Pugh in the eyes and thank him for saving my son's brain? I'm overwhelmed with gratitude and each word feels more inept than the next. 

Negative energy

I've learned a valuable lesson last week. 

No matter if you like someone, or dislike someone, they have been in your life. And when their life is over, it does effect you. 

I held so much negative energy for one person. I thought I had found peace and forgiveness years ago. My mistake. 

On Thursday my negative energy exploded everywhere. It hit all the walls, the ceilings, I couldn't handle being inside of a building. Once it escaped, it was gone and I found true inner peace. 

Reflections

Andy's birthday is around the corner. This is a milestone that I don't take for granted. 

A lot of parents spend the day their child is born celebrating. It's a joyous time filled with visitors, and pictures. Or at least lots of baby cuddles. 

I didn't. I spent it in tears fearing for my baby's life. I know I'm not alone, I know that countless others had similar NICU experiences. But what about the ones who carried a full term healthy baby and then the birth is where things became complicated? And then that baby was transferred to another hospital without you?  I haven't found them yet. It could be a lack of searching on my part. A deep self conscious part of my existence that savors just one experience that's all for me. What if I found another mom who went through what I did? What if she handles it "better" than me? 

 

I'm overwhelmed with jealousy of others who had an experience where they were never separated from their baby. This all leads me to the conclusion I cannot do it again myself until I can be genuinely happy. How can I be happy for myself if I'm not happy for the mother next to me? 

This is not to say I haven't made progress in the last year. I can talk about it now, I can ask other mother's about their experiences without blurting out spiteful, argumentative comments. 

I like to think I will get there. 

If it wasn't this, it would be something else.

The appointment went good and bad. 

For the good we discussed how this could all be caused by the lack of oxygen at birth or a genetic disorder. After hearing of Andy's vision issues he was able to recommend even more strands to check for. 

His progress was impressive, and the doctor was amazed. He laughed, danced and played with his feet to show off.

The swallow test (of course it has a fancy name that I can't remember) and referral for a GI doctor has been made. It's looking like a possible G tube. 

I feel any sense of control slipping away, what a false security I was adjusting to. 

I've seen this coming, as others, namely his pediatrician didn't say a single warning. How hard is it to warn a parent? What are you afraid of, my tears? I'm a vulnerable person, I do feel emotions for my child's hardships. I still deserve full disclosure. We will carry on with the rest of our day now. 

Genetic testing again

Tomorrow is Andy's next neurology appointment. We will discuss his progress, any possible seizure signs, more genetic testing, and schedule a swallowing test to be done at the hospital. The testing this round will be an Infant Epilepsy Panel, and the company that runs it will come out to our home to take his blood. My poor little buddy.

Even more work for me tomorrow, I'm going to be contacting the Medicaid Service Coordinators in my area and requesting a care at home waiver. Then I'm contacting the Division for Developmental Disabilities to see if there are any services I'm missing. I need to follow up with getting in contact with his new feeding therapist and how progress is going for his vision therapy. I found out recently that vision therapy is another service that can come here to take care of Andy!

Last night he slept very little. My guess is that he's hitting more cognitive milestones. He's becoming a sweetheart who laughs over hugs and kisses. 

Lost treasure

I cannot complain. IS snuck into our life like a home invasion in the middle of the night. It stole a few precious treasures, but it didn't take everything. 

We still have our boy. We still have laughs. We don't have spasms. 

At some point, and I can't put my finger on when, Andy's development did regress. In the area of feeding. He no longer sucks on the nipple of his bottle. He chokes on everything, and has the tongue reflux of an infant. Now we start feeding therapy. We will be on the bottle for a long time from now, and even longer for bites of food. My boy who could eat fish cakes with me, can only eat yogurt. 

This is one treasure we lost.