2013

2013
Happy New Year's to all of our readers.

2012 has undoubtedly been a year of hardships and grief for our family. Avery' s pregnancy, labor and delivery, NICU stay, first few months home stuffed full of adjustments and colic, the never ending feeding problems, the issues with her Doctor, the abuse investigations from so many different angles and people, the new g tube that has been nothing but problems, and a diagnosis of osteogenesis imperfect...and that's just the issues with Avery. Matt was deployed, Madi started school, Kailee turned two and definitely became terrible twoish...this year has been so incredibly trying.

This post isn't full of rainbows and sunshine. Tonight has been hard. Avery's tube is getting infected, yet again. The button is definitely too large for her tiny tummy at 2.5cm. It hangs out at pulls painfully on her granulation tissue. The tube going in and out constantly makes the site so sore... and she still seems to be having arm and leg "twitches" (spasms) that are not only annoying and painful for Avery but they are so h hard on me to sit by idly and watch her suffer. She is such a bright, enjoyable little girl. The first almost eight months of her life have been so terribly hard on her. They've been equally as hard on every member of my family. I know I've written of this in the past, but it is such a big issue for our family right now.

Tonight, instead of going out partying and drinking, I sat at my friend's house working painstakingly on tube covers, pads, and belts for Avery. I'm trying so hard to do anything to make her life more comfortable.

There are many OI families who have children two or three times more severe. Some don't survive the womb. Some fight for life. Some don't ever get to feel the air rush past their face while they run. Most will feel the pain of several breaks in their lives, spending weeks in huge casts to protect their fragile bones. Parents who learn tragically fast how to cast, medicate and comfort their ailing child. Those parents....they are me. They are the tens of thousands in the world who live with a child with OI. And they, we, survive.

Barely.

Tonight, instead of going out with my friends, I cared for my sweet baby. I cried. I don't do it often, but my heart bars a burden only a few will understand. Guilt. What did I do wrong?I was worried about having more children because of the growth restriction, but I selfishly wanted one more...did my body fail her?I know the answer. Logically. But my heart aches so deeply for my child. I know it does no good to wallow in self pity, or to focus on the negative. I know. But tonight, tonight my heart hurts. Instead of sleeping peacefully, she is screaming in misery. I hate that sound.. it breaks even the toughest soul.

Tomorrow, Avery will be going back up to the hospital and hopefully they can change her button. If not, we will take another trip to Fargo to give their IR department another shot at her button. I'm hoping the military will get us out of here soon enough. Avery' s medical needs far exceed the capabilities of this hospital. Even Fargo isn't terribly adequate for Avery. I'm hoping to go to some where with a great children's hospital like Texas Children's. I'm ready to get her fixed up and living life like a normal child. As normal as normal will be for her.

The last three days I've had a terrible headache. Saturday it was a migraine but not terrible. Yesterday I couldn't even get out of bed. Today it's just a constant, annoying headache. The kind you get behind your eyes. I've already been to the ER twice for migraines in the last week or so...they tried toradol, reglan and benedryl mixed. Nada. Diluadid. Nothing. I've been taking ibuprofen 800mg twice a day plus naproxen. No relief. I'm miserable from my headache. If anyone has any OTC or at-home remedies that would be awesome. I NEED to be able to function.

Thursday is another court date. It is actually our pre trial but hopefully it will just be the closure of our case. I'm praying so hard for an end to this nightmare of madness. Sometimes gotta give!

"So we do not lose heart. Though our outer self is wasting away,our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." - 2 Corinthians 4:16-18