Sorry!!

It's called a gastrostomy tube (my bad)
and if you can't click on the links, copy and paste them in the address bar.
:)
gina.s

QUICK UPDATE

Hey, I still can't post regularly, but whenever something big worth  mentioning happens, you know I will mention it.  So, I'm just going to say it.  Daniel's nose-feeding (NG-nasogastric) tube is gone and has been replaced with a more confusing and frustrating, but better in the long run, G (gastric) tube.  As you can imagine, the "naso" has been removed, because the tube used to run from his nose to his stomach, but now, it just goes right into his stomach.  So he's had surgery. There is now an opening in his stomach where the "tube" is. 

 Here is a drawing of what the thing looks like (the balloon part is inside, to keep it from being pulled out.)  http://goo.gl/izud4  

This is what it looks like on Daniel (the tan surrounding is skin, but that is a model, so it's probably rubber.)

http://goo.gl/Wkyj2  

Thanks for all your prayers, last night Daniel giggled and smiled for about 30 seconds, we hadn't seen that in months.  Hopefully, with all the new medicines we're trying, at least one will help him!!

TTYL <3

gina.s

Hexco's Weird Word of the Week, May 5th, 2011

http://myemail.constantcontact.com/----Weird-Word-of-the-Week----.html?soid=1100895186825&aid=8_upZZXBP_U
Happy Cinco de Mayo too!!!

News

hey everyone, unfortunately I'm taking a break from my blog for a while, because it is just too hard to keep posting when there is so much going on: school, spelling, housework because my dad is working and my mom is at Daniel's appointments and errands and such, helping with Daniel, etc. Speaking of which, I have some very bad news. For starters, he is still having seizures, which means he is severely developmentally delayed- he can't even sit up on his own and he's a year and a half old. He also needs supplied oxygen at night because he is not getting enough on his own Said oxygen is pumped from a big tank in the hallway into his nose through a tube strapped to his face. Second, he had a "swallow study" which showed that regular baby food he could eat just fine, but formula and liquids were getting into his lungs. So he now has a tube running from his nose down into his stomach, which is hooked up to an IV pole in the family room. he was fed from a bag which the liquid was poured into, and the liquid was pumped through another tube which connected to his nose rube which then brought the food to his stomach. However, every time he gets fed through the feeding tube, he starts to cough violently and puke up all of his food. He starts to cry and the tube comes out of his nose. The puke just gets everywhere, and it smells bad, and you can't help but feel sorry for the poor little guy. We think it's because he has stomach flu, and he may also have a cold because he sneezes very often. So PLEASE PRAY AS HARD AS YOU POSSIBLY CAN AND DO WHATEVER YOU CAN TO ASK GOD TO HELP DANIEL AND MY MOM BECAUSE SHE IS STARTING TO BELIEVE THAT HE WON'T BE HEALED UNLESS THERE IS A MIRACLE. Oh and did I mention that he can't start another (86% effective seizure medicine unless he clears a mental and physical health test (basically-it's actually an EEG) on Monday? (today) I wish I could have posted this earlier so you could have prayed extra hard on Divine Mercy Sunday but anyway thank you for praying and I didn't mean to get you down (if I did) and I just wanted to tell you not to look for any posts soon. ttyl, gina.s

A Lot to Catch Up On

OKAY: I am going to write this in as few words as possible, because a lot has happened in the past week :) (and also because I just accidentally deleted everything that I had previously written for this post and now I have to start from scratch...again.)  


WEATHER:  The weather was really nice every day except for Monday, Tuesday and last Wednesday (not the Wednesday we went hiking-it was perfect weather then). 

Not much (that means nothing) happened on Monday or Tuesday. 

WEDNESDAY:  My whole family (excepting my baby brother and my dad who stayed to watch him)  met our cousins at Clifty Falls in southern Indiana to go hiking for the day.  We saw 5 or 6 waterfalls, some huge boulders at the bottom of some stone steps on a side path (and we ate lunch on a big flat one overlooking a creek), and a cave with bats (we could hear them but we couldn't see them).  I will be posting *lots* of pics of the waterfalls, the cave, and the big rocks soon.  Then we all drove back to Indianapolis to watch my brother Dominic's baseball game and then our cousins spent the night.  In case you haven't noticed, this was my spring break-we don't just do this whenever :) 

THURSDAY:  We all drove to Mason, Ohio (I think?) to Great Wolf Lodge, which is literally right next to King's Island.  I mean right next to it.  You can see all the rides from your room!!  After we got settled in, we all went down to the indoor waterpark (pictures will be going up soon also) and swam until it closed, about 3 hours from 5pm to 8pm.  Then we all had pizza and went to bed.  

FRIDAY:  We got up, packed, had breakfast, and swam again from 11am to 4pm, then we drove back home and our cousins went back to Kentucky (right across the river from Cincinnati).  
And that was our spring break.  


SATURDAY:  Not much happened today.  


SUNDAY:  Our family went to church, we got home and I read the comics.  Then I got a letter from Mariska :) and I don't remember much else exciting.  


Sorry, my memory's not that great and there probably wasn't much to remember on Monday, except the weather was bad. 


TUESDAY:  The only thing exciting about Tuesday was that there was a tornado warning, so we all slept in the basement that night.  It was kind of scary because there is just one small window high up in the wall in the basement, and so I could see outside, and there was lots of thunder and lightning, and if I listened really carefully, I could hear the wind pushing the trees back and forth (and we have big trees)  Oh and did I mention our parents weren't home?


WEDNESDAY:  I wrote half of my reply letter to Mariska, and went to gymnastics at 4pm. 


THURSDAY:  I had pumpkin pie (yummm) and grape nuts (ighhh) for breakfast, wrote this blog post (finally), and am going to gymnastics at 7pm. 


FINALLY, I am DONE!!!!!!!!! (until something else happens haha) 

Daniel Update

I am happy to say that Daniel is out of the hospital and doing very well!! he isn't sick anymore and he doesn't need supplied oxygen, but he does have breathing treatments (medicine in the form of mist through the nose) four times a day as well as his seizure medicine and others.  HOWEVER, he is alive and well for now!! ttyl <3
gina.s

Rest of First Post :)

hellooo this is to finish the first post :)

FRIDAY: it was nice outside, so mainly i was just outside or doing school the whole day.  we also visited mom and daniel at the hospital.  i also wrote the first section of the first post.

SATURDAY:  i dont really remember much except that Dominic's allergies were really bad.  Oh and here's a link to the live feed of the eagle's nest in Iowa: http://www.raptorresource.org/falcon_cams/index.html (see if you can see the chicks)

SUNDAY:  Me and my brothers went outside for a little, then our family went to church and went to visit my mom and Daniel at the hospital again, and we brought Boston Market for dinner.
        
MONDAY:  Me and my siblings went to our homeschool co-op (hi julia), then we got home and I did some school and now I'm writing this.  Sooo...yepp bye :)

P.S. Okay my blog wont be a weekly post, and it wont be a daily post, it will be a whenever-i-can post.  because i dont have time very day for a daily post, and i dont remember what i did each day on a weekly post.
BTW:  There is a fishtank at the bottom of my blog, the fish will swim to your mouse, click to drop some fish food            
:D