Sunday, December 30, 2007
Josh tube fed him 2 ounces at 6pm and then at 7pm he vomited what looked like chocolate milk. Usually if he is going to get sick after a feed it is within the first 10 minutes after the feed. So the fact that he waited an hour before getting sick was strange in itself. I immediately thought that it could be blood in the vomit. Josh didn't seem to be as worried as I was but he went along with my worry (I think to make me feel better).
I first called the Glennon Exchange where you phone and talk to a nurse and they give you advise on what to do. The nurse told me that I needed to take him in to be checked out due to his history. I knew that they would tell me to take him in, they hear g-tube and they immediately want him to be seen. We were on the road to St. Louis at 7:40pm and were at Cardinal Glennon by 8pm.
They took us back to a room right away and started the screening process. They wanted me to feed him again to see if he would vomit so that they could test it for blood. Oh, by the way, he was acting completely normal and smiling at all of the nurses and doctors that came into our room. What a ham bone!
I feed him another 4 ounces while we were there and he never vomited. They finally decided to take some stomach contents from his button and test it for blood. It showed no blood so they wanted to get a stool sample (yippie!). So the swabbed up there (I am not going to go into details on this part! ;-) They had to send the sample off to the lab and we will only hear from them if there was something abnormal.
By 10pm they were sending us home telling us it was probably just a fluke and that he probably just has a virus, which would have to run its course. ((SIGH))
I am not sure that it is just a virus. My gut is telling me differently, though I am not sure what may be going on. We have an appointment with Dr. Rahman tomorrow, his peditrician. So I am going to go over all of this with him and see if he has any thoughts. I am also going to call GI (Dr. Brady) in the morning and let them know what happened and see if they want us to do something. The vomiting needs to stop!!! Soon!
I have had an email and a phone call into our genetic nurse asking for a referral to an ENT (ear, nose and throat) specialist for 2 weeks and with the holidays have had no reply. Will has touble swallowing (not being able to keep food in his mouth while eating and always letting drool run out of his mouth) and I want the ENT to make sure that there is not something going on in his throat causing him to not be able to swallow properly.
So I may have had a moment of freaking out last night when I decided to take him to the ER. But I know that brown vomit is not right, even if the test says no blood. I hope that I make some progress with the ENT this week, we will see.
Wednesday, December 26, 2007
Aunt LeLe (Leslie) and Aunt Marty (Marcea) gave Will a Rudy and he loves it. He got on it and starting bouncing right away!
Aunt LeLe, Aaron and Mikkah gave
Leslie, Aaron and Mikkah. Aaron had to work on Christmas Eve (hince the "brown"). He came straight from work because the kids were standing at the door yelling for him to come home. He didn't want to make them wait any longer to open gifts. Thanks Aaron!
Grammy Abell and Dell celebrated with us too. Dell was more entertaining than the movie at some points because he would get to laughing so hard. I am not sure what was funnier, Dell or the movie!
We had a wonderful Christmas Eve. Thanks Mom and Mike for having us over! Loves and Hugs!
Saturday, December 22, 2007
Thursday, December 20, 2007
After the ultrasound we went to clinic where we had to see urology and orthopedics. We usually have to see tons more doctors than that but the last time that we went the other doctors put him on a one year follow up. I was thankful that we only had to see the two doctors because I had Will there by myself. Josh had to stay at home with Caroline because she has been sick all week. Anyway, I was hoping that we would be in and out of there, but no dice! Our appointment was at 1pm and we didn't even get a room until 3pm! So it was almost 4pm by the time we left the hospital.
But here is the exciting part!
While we where there one of the doctors said that there was a family there who also has a child with RTS and wondered if I would like to meet them. I said "Heck ya!". So yesterday we met Alex! He is very young, I want to say maybe 4 months. But he reminded me a lot of William with a full head of dark hair, so tiny and of course the broad tumbs and broad toes! He was so very cute! Alex is the youngest of three children. I talked with his parents and found out that they live in Jacksonville, IL, which isn't too far away! I am so excited that we have found someone so close to us. Alex has already had malrotation surgery (Will had that surgery in April) and he is getting ready to have tethered cord release surgery (Will had that surgery in Nov of 2006). We exchanged email and phone numbers so I am very excited to get to know this family.
It is so amazing how Jessica (Alex's mom) and I could instantly bond the way that we did. I looked at her and all of the emotions of when Will was first diagnosed came rushing back. I could see the pain in her eyes and I remember that pain, it is still very fresh. I just hugged her and told her that it does get easier. She questioned me at first and I told her that I know it is hard to believe right now but it does. I think that she was relieved to see Will doing so well (he was being a typical "Stitch", into everything, not wanting to be held, etc.) We didn't want to stop talking and I know that I didn't want to say goodbye but they had other tests that they had to get to. So I went home and sent her an email right away.
That was our day, it was very exciting!
Monday, December 17, 2007
Thursday, December 13, 2007
Ms. Abby, "Oh, Caroline, that would be so sad if someone took your baby. Why would you want to play that?"
Caroline (with that DUH look on her face) said, "It is JUST a story!"
Can you tell that I have had the "stranger danger" talk with Caroline a few times!
Wednesday, December 12, 2007
Today, Ms. Patti and Ms. Robyn gave him a Nuk brush. It has little prickles on the end and he really enjoyed chewing on it. This is a picture of him with the brush. They also give him vibrating toys (a jiggler) and a vibrating spoon to "wake up" his mouth so to speak. He loves the vibration. They also tried other flavors with suckers, cheese whiz, puffs and baby food. He did pretty well today but was ready to get out of his high chair by the end.
Here is a picture of Will when they gave him a sour sucker. He face was priceless but he wanted more! That was today's therapy, we are done with therapy for the week!
Tuesday, December 11, 2007
Oh, make sure that your volume is on!
Wednesday, December 5, 2007
She was very confident in saying, "We sang the Danger Song".
I said "The Danger Song? I have never heard that song, how does it go?"
She said, "You know Mom, the one about Baby Jesus!"
"Again, Caroline, I don't know that song, sing it for me."
She said, very annoyed...
"Away in a Danger, no crib for a bed...."
It took everything that I had not to start laughing because that would have REALLY made her mad!
Tuesday, December 4, 2007
Monday, December 3, 2007
"For 11 years, writer Ian Brown and his family have dealt with an unexpected presence - his son, Walker, born with a rare and complex genetic disorder, CFC, which makes life very disorderly indeed. Unable to communicate or even to eat on his own, mentally delayed, fragile, sickly, sometimes destructive, sometimes joyful, Walker is a mystery made possible by modern medicine. In his remarkably frank and intimate story, Brown describes his struggle to care for and to understand his son, and through him, the value of a human life."
Go to http://www.theglobeandmail.com/boyinthemoon. Part 1: Walker, the Unexpected Son is available now. Part 2 : Finding Walker's Place will be available next Saturday and Part 3: Walker, My Teacher on December 15th.