According to the infusion records that we keep for Niki, she received her 18th dose of factor via port on today. That means that John and I have poked Niki a total of 18 times in the chest.
Niki started off responding very well to port access. You may even remember me telling you that she didn't flinch nor cry the very first time I poked her. In my blog entry, I marveled at how well she seemed to be doing for the first couple of pokes. At the time, I naively thought that the only challenge we would have to face was getting her used to being restrained during infusions.
Well my friends, I was wrong.
Slowly, but surely, Niki started to develop needle phobia. I'm convinced that EMLA works in the same capacity as the topical numbing solution the dentist gives you before a shot. Sure, it *helps* with the pain, but being "numb" doesn't necessarily mean you can't feel the poke.
Niki now resorts to all out crying the minute we clean her skin with Chlorhexadine. We play her favorite videos (Barney, Beyonce's "Single Ladies", & Justin Bieber's "Baby") and it just barely helps with her anxiety. We've tried letting her play with her syringes and needles (with the actual needle removed, of course) and it still doesn't help come actual "pokey-pokey" time. We even give her a pep talk when we put the EMLA on. She knows that EMLA means "pokey-pokey" time is near. John and I try to make to make everything pleasant and soothing for her, but in the end, Niki still pulls back and screams the closer the needle comes to her chest. John and I take turns accessing her port because it's emotionally draining for us.
We just don't like the idea of hurting our kid, you know?
We're her parents for godsakes -- we shouldn't be invoking fear in her the minute we snap on sterile gloves! Sometimes, this all seems so unfair. She's just a little girl! She shouldn't have to be going through all of this. We shouldn't have to go through all of this. Even though we've already experienced the worst case scenario with Ethan's passing, I still can't force myself to be OK with poking my daughter in the chest every other day. With time, I'm sure we'll all get used to this. We've gotten used to everything else, right?
I just wish time would time would hurry up!
I attended a private healing mass by Father Manny Fernandez at Dr. F's (our dentist) house on Friday, 8/6/10. The Mass was spiritually moving for me. I cried. Fr. Manny said a special prayer for Niki and the baby inside of me. And, Dr. F gave me healing oil (the Oil of St. Joseph) as a gift -- Fr. Manny blessed it specifically for our needs. I use this oil every night to anoint Niki and my belly (for the baby). In addition to my nightly prayer, I also say special prayer that accompanies the oil for Niki and the baby.
I'm not perfect, but I DO have a very strong faith in my God. After all, the light of Christ shines brightest during times of darkness, doesn't it?
All I have left is faith.