Friday, June 26, 2009

Happy Birthday Bryce! (and another picture marathon)

Today is Bryce's 5th birthday, and once again I'm feeling very melancholy. When we found out we were pregnant, it was a total shock - Audrey was only 4 months old when Bryce was conceived. So he wasn't exactly a planned pregnancy. In some ways, his pregnancy was easier because I didn't have as much morning sickness, but we did have a couple of times where we thought I was losing the baby because I was bleeding. But at exactly 37 weeks, Bryce was born. I have to admit that I was under so much stress when he was born - Audrey had just been diagnosed with juvenile arthritis 3 days earlier, on our 3rd wedding anniversary, June 23, 2004. Two days later, on Friday, June 25, and I had an amnio to check Bryce's lung maturity, and it was fine. The next day, Saturday, June 26 I was a scheduled c-section. The doctor's didn't want to take any chances with me going into labor early since it had only been 13 months since my previous c-section, and they also didn't want to take any chances with my blood pressure. Gene and I had been debating boy names all the way through the pregnancy, and just couldn't find anything we just loved. We knew his middle name was going to be Edward, after my dad, but just couldn't find that first name. I wanted something not too terribly unusual that people wouldn't be able to spell it, but I also didn't want something totally common, either. So Bryce was born a few minutes after 9 am, and about 3:00 in the afternoon they finally had me back in my room, and the baby (as he was then known) in my room, and things settled. Gene was going to go down and get some lunch, and I said you are not leaving this room until we have a name for our baby! So we sat down again, and started debating names. We both really liked the name Bryce Edward, and we just loved the sound of it. So that's the story of how he got his name. But I wasn't going to keep calling him "the baby", so it was kind of funny.
Bryce was actually doing really well at meeting all of his milestones until about November. Then he got a really nasty cold right around Thanksgiving, and he also started having these funny movements as he was falling asleep. He actually didn't get completely healthy until February, when he was finally diagnosed with RSV. He just kept catching everything that was going around. All the time he kept having these weird movements, but in my mind they were all associated with him being so sick. To make a long story short, Bryce was diagnosed on March 25, 2005 with infantile spasms. It's a very nasty, rare form of epilepsy that strikes babies between the ages of birth and about a year. It can lead to a lot of problems like mental retardation and severe problems with other forms of epilepsy. For Bryce, his development stopped right around the time he got sick, and he literally became a lump on a log. He wouldn't interact - he wouldn't do anything except lay there. We did various medications, and eventually found seizure freedom on Topomax and Zonegran. Bryce's last seizure was on July 10, 2005. That was the best birthday present I could have asked for. He was weaned off all of his medications in January 2007, and has been seizure free for almost 4 years now. We know that he is a walking, talking miracle, and although I get easily frustrated with him sometimes, know that we have a much better outcome than a lot of others that I know. My child can walk and his talking is getting better. Bryce has been diagnosed with Childhood Global Apraxia, which is a motor planning problem. It's affecting some of his gross motor skills (like pedaling a bike) his speech, and most especially right now his fine motor skills. He receives a lot of therapy (speech and occupational therapy) to help him, and he's also enrolled in speech and OT through the school district.
I have an amazing little boy. He has conquered and overcome so much in his little life. He has an amazing smile and can be the absolutely sweetest little boy. When he's in a really good mood, we have a little kissing thing going on - I'll give him a kiss, and then he turns around and gives me one, and then I'll give him one, and it just keeps going that way. It's really cute. He knows his alphabet and knows the sounds the letters make, even if he can't get them out right. He can't write at all, but we're hoping that eventually will come. If not, the school district has said they are looking at alternative forms of communication for him. I love my little "bubba boy" so much, and I'm so proud of him and how hard he's worked to even attain the smallest goals. We didn't know for a long time if Bryce would ever walk or talk, and he's doing both. He walked at 15 months - just 3 months after the seizures stopped. He didn't start talking until he was 3, but he has such a huge vocabulary now. We can't understand a lot of what he's trying to say, but he's getting clearer, and we're getting better at understanding what he wants.
I am so so proud of my Bryce. I know that he can accomplish anything because he's already accomplished so much.
Happy Birthday, Bryce. I love you.
P.S. I'll post pictures from his birthday later. We're going to Manti this weekend for the Mormon Miracle Pageant and are spending the night. Yeah!

1 comment:

  1. awwwwwww such sweet kids !
    I saw this link on your facebook page!
    Love all of these cute pics!