Well, shoot.
So the last time I read my Bible, the verse that popped out at me was Psalm 112:7. "She will have no fear of bad news; her heart is steadfast, trusting in the LORD." When I read this verse, I thought of my friend. Our upcoming trip to the doctor didn't occur to me.
Well. Let's start from the beginning. Alicia had three doctor appointments this month, not four. Synagis doesn't start until November, that would have been #4.
The first was Dr. Bothune, pediatric opthmologist. Alicia is at high risk for crossing her eyes and bad vision. So, off we went. Her eyesight is just barely within normal range, but normal it is. If she begins to cross her eyes I am to call right away. I find myself looking at her, "Did she just cross her eyes?" "Is that what crossing would look like?" I see him again in nine months, unless those eyes really do cross.
#2 was ECSE: Early Childhood Special Education, just keeping tabs on my babe. Alicia was extrememly tired and cranky for their whole visit, but they believe she's on track. She's definitely on the slow end of the track, but on the track she is nevertheless. We talked a lot about feeding. They believed that I really should be trying to feed Alicia just a little food (like at least two bites) twice a day, that she really did need the practice and exposure. They say that learning to eat solids is crucial for speech development. So we've been trying more and I think she's actually starting to get into it. We let her hold the spoon, something we never would have done back in the days of first-time-parenthood. We see these ESCE ladies every month.
Ah, today. Today was Dr. Sidman, pediatric ENT. Today was the worst doctor's appointment we've had in a long time. He's a great guy, though. And he's got this cool laptop that he writes on. Like with a pen thingy. Just writes. Right on the screen. Do you have one of those, Ernie? Yeah, okay. This appointment was to look at the lump in Alicia's cheek. The pulmonologist guessed it was just a hemangioma, but called Dr. Sidman anyway, who said we should come see him. And it's not a hemangioma. Now, hemangiomas are harmless little red spots which preemies often have quite a few of. Licia has her share. It's not a hemangioma. It's a tumor. Not cancerous. But this kind never go away on their own. They often grow and always eventually become infected. It needs to come out. He'll do surgery when Alicia is two or three years old. She'll have a scar on her cheek. We'll see him again in six months, unless it grows or is painful to her. This thing's proper name is pilomatrixoma for short.
As if that weren't enough, Alicia also has fluid in both ears. We were popped into a little hearing test room, and Alicia failed with flying colors. Little Bo Peep can't hear too much. Now, she did have her hearing tested just before we left the hospital. She's not deaf. It's just this fluid. We'll wait five weeks until our appointment with the pediatrician to see if it clears up. If it doesn't, she'll get tubes. I feel like such an idiot parent for not noticing that my daughter can't hear. Since we left, I keep saying her name to see if she responds. Occasionally. But tonight she woke up when Toby started crying in the next room.
So there it is. Bad news. Not too pretty. I tell you, I could eat great quantities of sugar and fat today.
Oh, and all the bad news today has nothing to do with Alicia being premature. It makes me feel like life is just out to get Licia one way or another. I am so very grateful for the high quality of medical care Alicia receives. I am grateful that there are people who spend extra years studying to be able to keep my Alicia healthy. One question I forgot to ask, does Alicia get to fly to Canada for Christmas?


3 Comments:
Hey there
We had the same problem with Jake's ears. Jake has failed his left ear up until today. He has had fluid since he has been born and 3 weeks ago, he had tubes put in. Today, he had his post op and he passed both ears. Fear not, the tubes help. Jake even had a double ear infection last week and having the tubes the infection drained out, ending it quickly and keeping him relativly happy. Keep your chin up...
Jodi
I had tubes in my ears 5 times before I turned 5, and I also had specially molded earplugs I had to wear when bathing and swimming until I was 7. I'm sure it sounds like bad news to you, but if they do go ahead with tubes, Alicia will soon be all the happier to be hearing more and won't remember a bit of it.
Hello Fuller Family,
Michelle, do you remember those days we spent our lunch breaks in the Children's Hospital break room? We talked about the difficulties that our little girl's were having. How difficult it was for them to eat. Remember those long days of trying and trying to nurse our girls, wondering how it could be so hard to learn how to eat? Then there were the apnea epesodes, Alicia's monitor would alarm, then Alyssa's.
I could go on and on about the "do you remember" but we both know that it feels like it was just yesterday and it's something that we will never forget. Both Alica and Alyssa have come so far. I always think about the days I spent at Children's, waiting for that day when I could finally take Alyssa home.
Well, that day finally happened seven months ago and I haven't talked to you since. I enjoy reading your blogs and having the opportunity to check in on Alicia's progress. Alica looks great, I love the pictures.
You're a very dedicated mother, Alica is lucky to have a mother as caring as you.
Keep your head high, although it seems like when you think you've gotten through all obstacles another one hits you.Remember how far Alica as come from last December. What a Miracle!!!
I still have Alyssa's caring brigde site caringbridge.org/alyssahorob so you can check in on her if you want. You can also e-mail me at thorob@nemontel.net. I would love to hear from you.
Tracy Horob
Williston, ND
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