Hard Days, Little Victories

Little Sis has been refusing any type of bottle. She is a champion nurser, and didn't want to give it up. Not that I'm giving up on it completely. It's just that our life with Little D has just gotten seriously complicated and I need to know she'll take a bottle when I'm not with her. I also need to know she'll go to sleep for someone else. I'm still a little touchy on that last part. Anyway, my lovely cousin came over for the whole day on Wednesday last week and now Little Sis is readily accepting a bottle for at least 2 feedings each day. Also, pumping is helping my milk supply increase as well, so I know she's getting more to eat. She is also taking some solids well now too. She loves peaches, pears, carrots and squash, but she's not so fond of sweet potatoes or applesauce. Most of that ends up on me, or her bib.

In other news, I finally broke down to a neighbor/friend and told her everything that has been going on. She promptly went to our Relief Society President and told her everything, so then SHE came over and sat down. "What can I do to help?" Keep in mind, this poor woman is in charge of the welfare of our entire court. That's 58 families that she is responsible for. She is also one of my friends, but on top of all this responsibility, she was barely called to this position less than a week before. Anyway, I told her I needed help finding childcare for my daughter while I'm taking Little D to all his appointments. She said she'd help arrange and if I thought of anything else to give her a call. I'm trying to think, but right now I don't know. She also suggested we talk to our Bishop, which I know we need to do, it's just hard to ask for help. I don't know if I would have asked her for help if it hadn't been almost handed to me on a silver platter. I'm pretty funny that way.

So I guess this brings me to the gory details about what is potentially wrong with our little boy. I have to say, somehow writing it on this blog makes things real to me, so I've been avoiding writing about this. Little D has speech delays, which you know. He also has some other developmental delays and sensory processing issues. Beyond that, I haven't put much on here. Back in June we visited our local health department's clinic for children with special healthcare needs. We were hoping to get an actual diagnosis of sensory processing disorder. We got so much more than we bargained for. First we met with a developmental psychologist who told us she saw the SPD things, but also some autistic tendencies. Then she told us his facial features reminded her of a genetic condition and she would like us to see the medical doctor in the clinic. We agreed.

When we met Dr. K, she asked us so many questions about Little D's health history, my mind was spinning. She asked us if he had any hospitalized illnesses, which he hasn't. Then she asked us if he had a heart murmur. Yes. Has he ever had an echo? No. Then Little D refluxed (vomited) all over the floor. Does he do that often? Yes, several times a day. I thought it was because he was overstuffing his belly. Now I know that's not what causes it since he eats less and continues to reflux. Dr. K prescribed the Prevacid and talked to us about the genetic condition, 22q11.2 deletion – also known as DiGeorge syndrome or Velo-Cardio-Facial syndrome (VCFS). Dr. K described the common problems to us and in my head I was checking them off in a list. It was like she had read a page from Little D's health diary, if there was one. Nearly all his symptoms and problems, including the sensory issues, could be caused from this one genetic syndrome.

At first, I'll admit, I was excited. What parent wouldn't feel some sort of relief at the thought of being able to finally know why their child is 'different.' Then the reality of it started to sink in. This has been a process. We met with Dr. K back in July, and here we are, it's almost October and I'm barely realizing how serious this is – lifetime problems and concerns serious. I will have to write more entries about the many, many specialists we've been seeing and what they have all said. Suffice it to say that we have seen radiology twice, cardiology with a scheduled echo, GI with a soon-to-be-scheduled scope procedure and an appointment next week lined up with ENT with potential scoping procedure to be scheduled with GI.

Needless to say, it's not what I imagined I would be doing before my little guy turned 2. I assumed our biggest hurdle was finding a great primary care pediatrician. I had no idea. Luckily we're blessed with great neighbors and friends so Little Sis has someone to watch her every day we have an appointment for Little D. I so appreciate that since Dad is at school all day during these appointments. I couldn't do all of this alone. My attitude about the condition of our lives and Little D's health has gone from apathy to grief, to its current state of acceptance. We'll see how long this round of acceptance lasts before it turns to grief again.