Wednesday, April 11, 2012


Just a reminder: This blog is more of my journal. I keep it so that people will know whats going on in our lives and to help me vent. Please read, digest, enjoy, whatever... but do not comment. If you have something you feel you MUST say, send it to me in a private message and I'll be happy to read it.

Adversity: (n) adverse  fortune or fate; a condition marked by misfortune,calamity, or distress:

Easter weekend was pretty bring around our home. I worked most of the weekend, and the rest of it was spent going back and forth between family members houses doing the same ole mundane things. James David has a new word, "toes". That was pretty exciting. We also discovered he has pretty much no interest in chocolate (like most other things edible, with the exception of cheese.)

Sunday evening I noticed a little knot behind James David's right ear. He did not like it when I touched it! I gave it a few days assuming it was probably a swollen lymph node. Over the course of Monday and Tuesday he became very snuggly and would just lay on my chest and watch TV when we were home. They said he was doing very good in school, though. So, with the knot still behind his ear yesterday afternoon, I took him to his pediatrician.

As I assumed, it was a swollen lymph node, but his white blood count is normal, indicating no sign of infection. It's probably just his body reacting to his surgery a few weeks ago, and should go away in time. YAY! I like getting good news. :) Unfortunately, the good news was followed with not so good news. James David has lost another pound. This puts his total loss at 1 1/2 lbs in the last 6 months. At 19 1/2 months old my son only weighs 16 lbs and 5 oz. He is plummeting off the charts. He was given an antihistamine that is known to help increase appetite, since he is already drinking 3 Pediasure a day. We also have an appointment to see a nutritionist and scores of blood work to have done. There's talk of a feeding tube. On a worse note, I also noticed that James David's head looked "normal" yesterday instead of its regular concave shape in the front. Meaning his fontanel was fuller. Meaning that his shunt was not draining as well as it needed to be, hence the snuggly-ness and spacy-ness. It was better this morning, but it tends to fluctuate. I'll be keeping an extremely close eye on that like always.

After the days events we went home and did one of James David's favorite things in the whole wide world. He took a bath. We played and played with his new bath boat and sailor. Laughing and splashing and having the time of his life. Just him and mommy. As I played with my son, seeing his slightly swollen head (occasionally keeping him from laying down in the water), counting his ribs as he crawls around the bath tub, I just looked at him in amazement. Despite his adversity he is still having a marvelous time just playing.

 I looked at him and was taken back to the ultrasound room at UAB's Maternal Fetal Medicine clinic. Where they told me about Spina Bifida. All those appointments where they switched their stories from he would only live a few hours to telling me how non-severe his case was. Which they were right, his legs function is phenomenal. But what they didn't see coming was his Hydrocephalus. Sure they knew he would need a shunt, but I remember being told how rare multiple revisions were and that statistically my son should be A-OK. Eight shunt revisions later I just want to look at those doctors and be like, "What the hell?" Nobody could have saw this coming though.

Its times like these I just want to take my son and run far, far away. Protect him. Take him somewhere and start over, but that is foolish because no matter where I take him, his health will remain the same. I want to scream and break things I get so angry. Why can't he just be allowed to be happy and healthy for more than a few minutes? I want to crawl up and cry. Sob. Scream. But none of these things will fix anything. If I breakdown, I don't know if I'll be able to get back up. So I keep my big girl pants on. I work two jobs and put off cooking and cleaning and anything else I can to spend a much time possible (as little as it seems) with my son, because deep in the back of my mind I wonder how long I truly have. I'm bracing for the new doctors and the new tests and I'll take whatever is thrown my way in stride. It's part of life. No matter how much we dislike the rain, we need it to grow, and that's where the love comes in.