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!

Thursday, June 18, 2009

Medication update and funny Bryce story

I heard from the NP at Audrey's rheumatologist's office. After consulting with her ophtomologist, he is going to increase her methotrexate to .7 cc sub q weekly. That should be fun with an increase in the nausea and vomiting that will go along with it. She's trying to learn to swallow pills, but it isn't going well. Not looking forward to this.

Bryce's b-day party is on Saturday. We invited one of his best friends from school named McCade. Turns out McCade is going to Disneyland this weekend, and so won't be able to come over for the party, but wanted to drop a gift off. We were all having snuggle time on the couch, and the doorbell rings. I open up the door and Bryce saw McCade through the crack when I opened it, and he just starts screaming McCade! McCade! It was so funny. He brought over a Candy Land game and an Uno Game - McCade's two favorite games. Right away both boys are off to Bryce's bedroom and playing. His mom and I looked at each other and said we have got to get these two together for a play date. I guess McCade talks all the time about Bryce, which just warmed my heart to hear. As a mom, you always worry that your child will be judged, and that's even worse when he has a speech impediment or something to make him "different". I'm so glad that children are so much more accepting of differences than others are. At least they are at the age of 5. I'm glad that a little boy named McCade can see Bryce's good heart and understand the Spirit, if not always the words.

Last night we were scheduled for OT, but his therapist was sick, so we didn't go. I tried to do some therapy at home with him, because he just loves playing with the play-doh they gave him. It's actually thera-putty, which comes in different "strengths" so to say, to work out the muscles of the hands. Last night we made pizzas, and snakes, and looked for popcorn and macaroni shells in it. Audrey had just as much fun with it as Bryce did. His OT is trying to strengthen the muscles in his hands and trying to improve his coordination through working with the thera-putty. And if he never realizes it's actually "therapy" so much the better!!

Wednesday, June 17, 2009

Doctor Day!

Yesterday was doctor day. We had 5 appointments originally scheduled, but turns out I was wrong about when Bryce's OT was, so we ended up with 4 appointments, but 3 of them up at PCMC. First up on the list was an eye doctor appointment for me. I've been battling what I've been calling stress headaches for a while now, but finally decided to have my eyes checked. I had this appointment originally scheduled for St. Patrick's Day, but got deathly ill and ended up in the doctors' office receiving IV fluids. So turns out my glasses are too strong, and that may definitely be contributing to my headaches. So I need new glasses. Then up to PCMC for kids' appointments.

Bryce was first up on the list with an eye doctor appointment. He failed his screening at school last year so I've known he's been needing a visit to the eye doc, but didn't really want to pull him out of school for it, and I needed a day when I could coordinate it with Audrey's eye doc. Bryce actually did really well - a lot better than I thought he would do. He named most of the letters correctly, and other than calling the letter V the letter Y, he did okay. But he was consistent in calling it a Y, so I think the tech understood. Audrey did pretty well too, but then she's been through this a lot more than Bryce. Right away I noticed she wasn't doing as well as Bryce, but of course the techs don't tell you anything. Normally we would have gone back out into the waiting room for an hour or so, but this time we didn't even get sat down before they were bringing us back to see the doctor. Bryce once again did really well, and doesn't need glasses. Then it was Little Miss' turn. Of course she is used to this as well, and just hops up on the chair. Dr. Hoffman still sees a little bit of inflammation in her left eye, which is where this whole dang thing started back in October LAST YEAR! Her right eye looks good, which is good news. But we just can't get this left eye completely under control. So for now she's still staying on the 2 different sets of eye drops. UGH. Then we went down to the cafeteria at PCMC, and had lunch, and since for once Dr. Hoffman was running early, we had a little bit of time and so went up and visited up at HCH. Then back down to PCMC for her rheumatologist appointment. We actually got in early there, too, which was totally unexpected.

Dr. Bohnsack said that he's not sure if he's going to increase the strength of the Remicade. He wants to talk to Dr. Hoffman about that, but it will be decided by the time she goes for her infusion next Saturday. I asked about an easier option - just going up on the methotrexate, and he said that she is pretty well maxxed out at that, and since she's having such severe nausea and vomiting with it lately, he doesn't really want to increase that and put that much more strain on her system. Another option was to increase the frequency of the Remicade, but that will end up costing us more money that we really don't have right now. She's also been complaining that the bottom of her feet hurt, and we've seen some swelling and puffiness on the balls of her feet, so he's wondering if arthritis is going into the metatarsal joints on her left foot. She also definitely has a sausage toe back again. It hasn't been that sausage-y for a while. So we're not exactly sure what is going on with her. The rest of her joints look good, and he said she has great range of motion in her left wrist where this whole dang arthritis diagnosis started. I counted them yesterday - Audrey is on 7 different medications. How said is that? She's on more medications than she is old! She's on Remicade every 8 weeks, daily folic acid, daily naproxen, methotrexate weekly, phenergran for nausea and vomiting from the methotrexate shots, and 2 different eye drops.

I'm actually tired of fighting this fight against arthritis. My hell - she's just 6 years old, and has been fighting a daily battle since she was 13 months old. Here's something sad - her 5 year diagnosis anniversary is coming up on June 23. That's also our wedding anniversary. I think I need to sign off for now before I become a little too angry at something I have no control over.

Wednesday, June 10, 2009

Thanksgiving Point Farm Country

We won tickets to the Wild Outdoors Festival down at Thanksgiving Point. It wasn't necessarily that I wanted to was a way to get the kids out of the house and let Gene sleep in peace. It was really kind of cool. We saw the Splash Dogs competition (the dogs jump off a deck into a pool trying to get the most distance). It was neat, and the kids enjoyed it. Bryce's giggle every time the dogs jumped was so loud and infectious every body around us just started to giggle every time he did. It was kind of funny. After the festival, we walked over to Farm country at Thanksgiving Point. Admission wasn't terribly expensive, and we got to walk all the way through and take a wagon ride. The kids got a kick out of that as well. They had this amazing white peacock. It was so beautiful. They also had a parrot at the Outdoors Festival, and I got to hold it. That was really neat.

The white peacock...and the "normal" peacock. The white peacock I've never seen before, so that made it cool in it's own right. But I just love the brilliant blue on the regular peacock's breast / body. It's so pretty. I just love it.

Yes, they really got to try and "milk" a cow that was giving out water. That was kind of cool. Audrey didn't want to get too close to the horses - she's actually quite terrified of them. They are okay as long as she's not close to them - get her close, and she goes into panic mode. And I absolutely love Bryce's grin. He has such a beautiful smile.

Bryce's birthday party is coming up this month, as well as our trip to the Manti Temple for pageant. It will be our first year taking the kids, so we'll see how that goes and if we all make it back alive....

Audrey's birthday party

Audrey's birthday party was on Saturday, May 23 at our house. She had such a good time! One of her friends from school came, and we went through almost 3 cakes - one I made, one my mom made, and the one we bought from the store.

Cinderella lit up. Audrey got a kick out of it. The Cinderella cake Grandma made.

Audrey and Juliette

The kids jumping on the trampoline - no injuries!

The stash of presents she got. She received some outfits, a set of scriptures that have her name on them, a Hannah Montana guitar, a Hannah Montana wig, a Candy Land game, a Cinderella doll, a Barbie and me...the girl scored.

Audrey also graduated from Kindergarten this year. Daddy taped it, but didn't take a lot of pictures, so this is the only one I have. She THRIVED in kindergarten. Absolutely adored her teacher, and only complained about homework a little. They had a fashion show for graduation and a little program. It was really cute.

Bryce also graduated from preschool. I can't believe my youngest will be in kindergarten next fall! It just floors me. They had a really cute program as well - sang songs and acted out the story from the 3 Little Pigs. Bryce was a wolf. It was cute. These were his preschool teachers - Teacher Dan and Teacher Tammy. He just loved them. Next year he will have Mrs. Davis in kindergarten. I so hope he thrives as much as his sister did....

Bryce's wolf mask from the 3 Little Pigs story.

Thursday, May 21, 2009

Audrey's birthday and reflections

I can not believe that my baby girl is now 6. The last couple of days, I've been thinking about what I was doing at that particular time 6 years ago. Like on Monday about 1:00, I thought oh, this is the time that they started inducing me. Last night about 9:00 I thought about how they were thinking of doing a c-section, but wanted to wait a little while longer to see if I progressed. I never did - after 37 hours of labor, I was only dilated to a 6, and about midnight they decided to do a c-section, and Audrey was born at 2:00 in the morning.

She's grown up so fast. I think it was just yesterday I brought her home from the hospital after being there for a week and a half with two different infections - staph and strep. One was in her blood, and one was in her urine - I don't remember which one was which. Audrey has grown into an amazing little girl. She is most definitely a mom's girl - she loves to help me in the kitchen and is my little shadow. She wants to go wherever I do and do whatever I do. Sunday morning are "our" time in the shower - she loves to take a shower with me and watch as I shave my legs. Why she's thrilled with that, I don't know, but that's Audrey. I got her to try broccoli by telling her "it's mom's favorite veggie" even though mom really isn't that fond of it, but I ate it anyways and put a good face on. Audrey has already dealt with so much in her short little life, I think a lot of the things she's dealt with shouldn't be things a 5 (now 6) year old should have to deal with. But she puts on a brave face and does it because she knows she should and she has to help herself feel better. Everybody comments on what a beautiful little girl she is. And I'm so blessed to have her. She is my light, and thank goodness she doesn't give her mom a lot of grief - her brother takes her share plus his share of grief for mom! :-) My kids really are the center of my life, and I'm so thankful for both of them.

Happy birthday, my sweet Audrey.