This is the first holiday that is not Jayen's first. I can remember one year ago and the teenie tiny little thanksgiving outfit he was in. Oh my this is going too fast.
We spent Thanksgiving at Great Grandma Foxhoven's house with lots of family. Then on Friday mom and grandma left the house at 3:30AM. (So she can't be mad at me anymore for waking her up that early!) They went shopping and the boys got to stay home and play.
Things have been going very well. Jayen is eating a whole jar of stage 3 baby foods now. He is willing to eat and often seems to enjoy it. Hope this lasts!
This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Thursday, November 25, 2010
Thursday, November 18, 2010
GI doctor
We met Dr. Zapata today. He isn't really sure what is going on with Jayen right now. We spent about an hour talking about Jayen's medical history and what was all going on with his puking. Right now we are just going to start some interventions until more of the test results come back. We were so close to being done with all meds until Dr. Zapata suggested getting back on an anti-reflux medicine. We also have to start him on a next step soy formula. Hopefully he will start eating more and putting on some weight. (I know, crazy to wish for again)
Wednesday, November 17, 2010
Upper GI x-ray
Jayen had his upper GI x-ray. Jayen was not allowed to eat anything since midnight the night before. Daddy is still back home trying to get that big buck so mommy was stuck dealing with a crabby baby in the middle of the night. Our appointment was scheduled for 8:40. We dropped Dalan off at Emily's and headed for the hospital early in the morning. Jayen was very hungry! They gave him barium to drink so they could watch it during the x-ray. I'm sure that was exactly what he wanted to drink ;)
The x-ray was pretty fun to watch, except for the part when they had to strap Jayen in and turn him upside down. I can't believe all that this kid has had to go through! The doctor's had to watch the barium go in all the way through to when it came out. As far as they could see, everything looked good. Tomorrow we go see the GI doctor and will hopefully get some more information.
The x-ray was pretty fun to watch, except for the part when they had to strap Jayen in and turn him upside down. I can't believe all that this kid has had to go through! The doctor's had to watch the barium go in all the way through to when it came out. As far as they could see, everything looked good. Tomorrow we go see the GI doctor and will hopefully get some more information.
Friday, November 12, 2010
4 point crawl, 2 point buck
This is daddy's big deer hunting weekend so we all headed up North to stay with grandma and grandpa. Just like clapping, Jayen had to show off his new crawling skills to daddy and grandma first. Daddy and grandma started yelling, did you see that? And of course, I didn't. Jayen decided he was going to get up on his hands and knees and crawl. Way to go buddy!!! What huge leaps you are taking in your milestones. You will catch up in no time. I'm so proud of you. Daddy may have seen you crawl first, but I got a deer first. Mommy got a 2 point buck (it was a spike buck) and daddy hasn't gotten anything yet. Good thing he has the rest of the week to try again!
the video is from my cell phone and isn't high quality
Sunday, November 7, 2010
Birthday Party
We celebrated Jayen's birthday today with family and friends. It was so fun to play games, laugh and reminisce about the past year. Mommy made the birthday cake. There was one for Jayen to smash and one for everyone else. Jayen wasn't sure about smashing it, so big brother Dalan had to help out.
We shared our story about Dalan making wishes every time we went to the hospital with Jayen. He would throw coins into the fountain and say, "Make my brother all better." Dalan's wish is starting to come true. Jayen has been seizure free for almost 6 months. We wanted to help everyone with their deepest wishes too. Mommy and daddy built a wishing well and gave everyone a penny to make a wish. We will use the wishing well as a plant holder and bury all the coins in the well. We pray everyday that everyone's wishes come true.
Saturday, November 6, 2010
Bang, bang, bang
For a few weeks now we have been working at therapy on getting Jayen to bang to objects together. I think I have said, "Jayen, bang, bang, bang," more than a million times. But, it finally paid off. Jayen started clapping for the first time today. Of course, he likes to show daddy his tricks first then waits a couple of days to show mommy. I hope to see it soon!
Thursday, November 4, 2010
HAPPY BIRTHDAY JAYEN!
A little cake, a lot of fun
Our little MIRACLE is turning 1!
Jayen started his birthday celebrations by going to the doctor. Yeah, yeah not the best birthday present ever but we had to do it. Jayen is only in the 4th percentile for weight. He is still having issues throwing up so we are going to get an upper GI x-ray and consult with a GI doctor. Hopefully we can figure out why he is not eating and why he is still puking.
Next we got to go to therapy. Again, not the funnest place to be but has to be done. We brought a GIANT cookie and a thank you card to our therapists. They have done so much for us. We are so thankful for them.
We did have some fun when we went out to eat. Just like his older brother, Jayen celebrated in style at Hooters. We were surrounded by friends who had shared in this crazy year with us. It was awesome to see this huge milestone. I remember 6 months ago not being sure where we would end up. I'm still in that place but it doesn't seem as scary anymore. We had some wonderful family and friends that helped hold our hands through our toughest moments. Without them, I don't know where I would be.
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