Wednesday, September 21, 2011

The Beginning: Part 2

(Read Part 1)

Months went by and we didn't suspect anything. Then he wasn't sitting at 6 months. I figured he'd be a late bloomer, he is sooo relaxed and content. When his 9 month well child visit came up and he still wasn't sitting independently or rolling or babbling (nothing other than raspberry/snorting type noises) I was pretty concerned. I knew in my gut something was off. We were very lucky to have an amazing doctor who listened to everything I had to say. She did a very thorough exam and noticed he had low muscle tone in his stomach. She told me she wanted Malachi to see a pediatric neurologist at MUSC as well as get Malachi set up with BabyNet, a early intervention program for delayed children in South Carolina.

The pediatrician had to make the appointment...not us. A few days later the office called me and told me that we could not just get an appointment with the pediatric neurologist. We had to see a developmental delay doctor first. And in order to see her we had to fill out a packet about Malachi, send it in, and wait for a phone call to be accepted and set up an appointment. I thought for sure it was going to take forever, and I just wasn't willing to wait for some doctor to decide Malachi's fate. So I started searching for any other pediatric neurologists that would see Malachi. To no avail. The only pediatric neurologists in the state, under our insurance that would see a child for developmental delay was at MUSC. I gave in and filled out the paper work expecting to not hear anything from them for weeks.

About a week later I got a phone call from DD (developmental delay) at MUSC asking if we could come in the next day. Some meetings had been cancelled that freed up a doctor to see Malachi. Lucky for us it was spring break so Brian didn't even have to request time off.

The next day we were sitting in a room waiting for the doctors (you see a resident first, then both the resident and attending). I remember it being hot. I was so nervous. When the resident came in she asked a ton of questions about Malachi's habits, gestures, milestones, eating. All that fun stuff. I felt drained. What more could I tell them? Then they start doing some play tests to assess his fine and gross motor skills. I felt embarrassed  Obviously he was behind normal development. I felt like it was my fault. Did I leave him in his bouncy seat or swing too often? Was I not talking to him enough? I felt like a horrid mother.

The action plan was to do a general brain MRI just to make sure there wasn't anything obvious, and since he had failed hearing tests in the past she wanted him to see a pediatric audiologist there at MUSC. We also made an appointment with the pediatric neurologist. The MRI and audiologist appointment were made for two weeks later and we couldn't get into the neurologist for over 3 months.

We also had Malachi assessed by BabyNet. He failed all three categories: physical, speech, and cognitive. He mostly failed cognitive because at that point there was no way to tell otherwise how his problem solving skills were. For a 10 month child if they fail physically and speech wise, they almost always fail cognitive as well because the categories cross over into each other. That enabled us to get physical therapy, speech therapy, as well as a early interventionist coordinator that would work with him and the family.

Two weeks passed and we traveled back down to MUSC. The MRI was sedated and that was the first time Malachi had an IV. I was a nervous wreck. I hated having to hold him down while the nurses poked him. When I asked the nurses how it went, they said obviously nothing major was found because they are letting you go home! That was a relief.

All we had to do next was the audiologist. She ended up setting us up in the sound booth. Malachi wasn't being very cooperative and I was thinking "great! now we're just going to have to come back to do the test again!". Some of the sounds were so loud that my ears and brain felt like they were rattling. When it was all done she came into the booth and said, "I'm sorry but I don't think his is hearing much if anything at all." We were stunned. What? She checked his ears for fluid and everything seemed normal so anything hearing loss was permanent. She said she wanted to do a sedated ABR (we laughed at that because we seriously JUST had him sedated less than an hour before...). She told me that any hearing tests done on a small infant while awake are usually unreliable.

We walked out of there in a daze. It wasn't until we were half way home and I was telling my mom of the details that I realized what had happened. Oh. My. Word. We don't think Malachi hears very well! I wasn't  convinced that he was completely deaf. I had seen him react to sound! Or so I thought. Malachi's sedated ABR was scheduled a month away. The longest month of my life.

To be continued.

1 comment:

  1. I hate it when they probe you with questions so that you feel like you've already told them everything you could possibly ever tell them. I don't know about you but I feel like I've always answered them wrong. Like when they ask me "how much does she eat or drink of this?" and I answer and then I keep thinking about it and I'm like maybe she drinks less/more than that.

    Anyway, your story sounds so crazy! What a long, tedious process to go through. The waiting is the worst. The things your mind can come up with seem to be worse than what usually really happens.