Sunday, December 30, 2007

Visited the ER last night

I took William to the ER at Cardinal Glennon last night because he threw up and it was very odd in color and texture. Since Will only takes in formula his vomit looks the same everytime, so we knew that it wasn't right and I had a flash back to the earlier episodes before the malrotation surgery.

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

Christmas Day at Grammy and Papa's

We spent the afternoon with Josh's family. His sister Teresa and Todd where there. Josh's brother Ryan, wife Andrea and James were also there. Along with us and of course Grammy and Papa. Here are a few pictures of the kids opening gifts. Caroline got a Smart Cycle from Grammy and Papa. She has been playing it all morning! She was very excited about it!

Here is Will helping Sister out with the box!

Christmas Day 2007

Here is Caroline opening presents on Christmas morning. She was so excited about everything that she got. She thought that she had been a good girl since she received so many gifts from Santa.

Santa gave William a spinning Elmo chair. He likes to look at Elmo but can't spin because his legs are still to short yet.

And Will in all of the wrapping paper. I think that he had more fun playing with the wrapping paper and boxes than he did with the toys.

Montroy Family Christmas 2007

We celebrated Christmas with the Montroy family on Sunday. We had a really nice time. Here are some pictures from the party.

Here is a picture of the kids with Santa! The one and only from this year!!
This is a picture of Caroline, William and James.

A picture of Aunt Judy sitting on Santa's lap. She sits on his lap every year, it is just so cute!
A picture of Grammy, Papa and their gang!

Aunt M. and James, he is actually saying "Cheese!!!" I love him!

Christmas Eve

We celebrated Christmas Eve with my family at my Mom and Mike's house. There was tons of great food and good laughs. We all watched National Lampoon's Christmas Vacation and laughed a lot. It was a great time. Here is a picture of our family in front of the Christmas tree. Caroline is wearing her new princess pajama's that NaNa and Poppi gave to her. She loved them! As soon as she opened them, she said that her clothes where itchy and that she needed to change into her new pj's.
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
Caroline a really huge Cinderella doll, which she loved! She kept saying "it's as big as me!".

Aunt Marty didn't want to have her picture taken, so we made her hold Will, which made her happy!

Mom and Mike in front of the Christmas tree. Getting a good picture of the two of them in nearly impossible, Mom always blinks!

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

Santa 2007

We took the kids to see the big guy in red tonight. It was a bit last minute, with Caroline being sick all week, time just got away from us. Tonight at 5pm Caroline said, "I still have to tell Santa what I want for Christmas!" And I thought, "Oh crap, I forgot to take the kids to see Santa Clause!". So when Josh got home from work, we loaded the kids up and headed for the mall. That's right folks, we are nuts, crazy, completely lost it! The line wasn't as bad as I thought it was going to be, we only had to wait for 15 minutes, only to be next to see Santa and while we were busy with the kids someone cut in front of us! The nerve of some people. Anyway, we didn't say anything becasue it's Christmas, right!? And as we were waiting in line I told Josh, "This will probably be the last picture of the two kids together on Santa's lap because next year Will will probably be afraid of him" we joked about it and laughed. It was finally our turn, set the kids on his lap and Will started screaming! Caroline told Santa what she wanted for Christmas and Will screamed his head off. The ladies (aka Elves) took some pictures but they were horrible and rediculuously expensive ($20 for 2 5x7's, that's highway robbery for the quality of picture that they take) and they wouldn't let me take a picture with my own camera so there are NO pictures of the kids on Santa's lap. What a disappointment (for me) Caroline was as proud as a peacock that she sat on Santa's lap like a big girl. Last year she was afraid and so Josh and I were also in the picture with the kids!

That was enough of the mall for me!

We then went to the Way of Lights at the Shrine. It was beautiful. Will fell alseep and Caroline talked our ears off but the lights we beautiful. At the end we made a donation to the Shrine and they gave us a stuffed camel which Caroline named Sheba (my parents used to have a dog named Sheba).

We got home at 9:30pm and put the kids to sleep (Brother with Mr. Cow and Sis with Sheba) and called it a day.
Here is a picture from last year's trip to see Santa. Notice Will is crying and Caroline is trying to get as far away from him as possible. This was after about 10 minutes of bribing, pleading and begging for her to sit on his lap until we finally agreed to be in the picture with her! And still she would not sit on his lap. This picture is classic!

Thursday, December 20, 2007

We met a new friend!!

Yesterday Will had appointments at Cardinal Glennon. We first had to go and have a renal ultrasound, they wanted to make sure that his kidneys are functioning properly after having the tethered spinal cord surgery. Everything was fine and it all looked great. Will did really well during the ultrasound, he just sat there and played with a toy while the lady used the tool on his back. He did great!

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

First Snow!!!!

Josh and Caroline (and Madi the dog!) went out to play in the snow on Sat. morning. Caroline had a blast! Madi liked trying to catch the snow balls! They stayed outside for quite a while. Caroline and Josh had a great time throwing snowballs at one another. Caroline got Josh with a few good ones! She has an arm on her!
Josh and Caroline built a snow man. Caroline said it was a girl snowman (snowwoman??). I am not sure why they put the bucket on it's head. But Caroline thought it was funny. I think that they may have stayed outside too long. Caroline was really cold when she came in. Caroline had rosey cheeks for a long time after she came inside. Oh well, it's not everyday that we get SNOW!!

Thursday, December 13, 2007

Caroline said...

something really funny at school yesterday. This was told to me by Ms. Abby, Caroline's teacher. It was about the time that parents pick up the kids and they were given free play time until their parent came to get them. Caroline and the two other girls in her class were playing with the baby dolls. Ms. Abby said Caroline grabbed the baby and said, "Ok, who is going to be the stranger that takes my baby?"
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

Sour Sucker

Will had therapy again today. Today he had speech and occupational therapy together. Ms. Patti (Speech) and Ms. Robyn (Occupational) come together a lot of the time so that they can work together on Will's feeding. He doesn't eat a lot by mouth. He does well with the spoon, but never consumes enough to make a difference in his daily intake. He usually only takes about 4-5 bites of baby food a day. A lot of what the therapists do overlap as far as oral stimulation, etc. They try to stretch out his cheeks because the muscles are really tight. They try to get him to use his tongue to work the food back in order to swallow.

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

We got Elfed

Ok, this is too funny. It takes a minute to load but it is well worth the wait. Caroline was giggling out of control and asking for more! Thanks Tena for the link!

Oh, make sure that your volume is on!


Circus Clown

Will had physical therapy this morning. Ms. Shawnery and Ms. Jenny were both here today. Ms. Shawnery comes twice a month and Ms. Jenny comes to one of those visits. Today we had both! They are working on trying to get Will to stand independently. Today they had him standing on an exercise ball to work on balance and building trunk strength. I thought that maybe they were working on his new circus act! He had fun doing it!

Ms. Jenny also brought a reverse walker for Will to try. It just gave him something to hold onto while he was walking. He is having trouble realizing that he can let go and still be able to stand. If he doesn't notice that he has let go he is fine. But once we realizes it, he startles himself and jerks and falls. I figure he will get it in his own time. I already have enough trouble keeping track of him when he isn't walking I can only imagine what it will be like when he is! Here is a picture of Will practicing with the walker. I was surprised that he knew to hold onto the handles. He did really well with it.
I have a feeling that he is going to be walking soon. :-)

Wednesday, December 5, 2007

The Danger Song?

On the way home from picking Caroline up from school, I asked her what she did at school today? She said that they had music time, painted the body of a reindeer brown, and went to Chapel. I asked what she did during Chapel.
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

Bilibo Fun

This is the Bilibo!
I heard about the Bilibo from my friends on the RTS listserv (emailing community). The Bilibo is a toy shaped much like a turtle shell that kids can sit in and spin or rock or whatever else their little imagination comes up with. Many of the other mothers on the listserv have bought a bilibo for their kids because there are many RTSweeties that LOVE to spin. I had never seen one or heard of one before the discussion with the other moms.

I asked Will's OT if she had ever heard of them and she told me that she had one. She brought it over today and left it for us to play with. Will hates it! He doesn't feel safe in it, he is not stable enough while in it (which is what many of the other moms had said about their kids). Caroline LOVES it! She has been playing with it since she came home from school. It has been non stop giggles all day long! She likes to sit in it and have me spin her around or spin herself around. She likes to stand in it and have me twist her (that is her favorite).

She also likes to stand on top of it and pretend that she is the Circus Ring Leader (Ladies and Gentlemen, Boys and Girls...)

She didn't even want to take a bath. She didn't want to stop playing with it, she asked if she could take it with her to the bathtub. She is now sitting in it watching Rudolph. I think this maybe something that we end up getting for the kids, maybe Will will grow into it, who knows! Check it out at the website...

Monday, December 3, 2007

Boy in the Moon

The Globe & Mail (Canada's National Newspaper) is running a special series over the next few weeks. It's called "The Boy in the Moon" and is written by Walker Brown, a Globe reporter who has an 11-year old son with a very rare syndrome.

"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 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.

Sunday, December 2, 2007

That smell?

As I mentioned in the previous post, Will is always opening and closing cabinets. I have child proof locks on all of my cabinets except the lazy susan (we can't figure out how to but it on without it still being able to come open). Anyway, Will was in the kitchen getting into that ONE cabinet and he pulled out a bottle of Apple Cider Vinager and broke the bottle. We had vinager all over the floor and needless to say, it stinks in my house! I have no idea how to get rid of the smell but it is really bad!

Birthday Party

Caroline was invited to her friend Avery's 4th birthday party on Sat. I would say that Avery is Caroline's best friend. She loves to go over to his house to play and she is non stop talking about him. They go to the same school, but in different classes, she is always coming home and telling me about Avery.

It was a Mickey Mouse themed party (right up Caroline's alley). Here is a picture of Caroline with Avery and another friend from school, Kendra.

Will went to the party too but he was much to interested in what Susie had in her cabinets to be bothered with the party.
He was quit literally in her cabinets! Opening and closing cabinets, doors and whatever else is his new favorite thing these days.
We all had a great time and Susie and Avery are wonderful hosts. Thanks for having us over! Happy Birthday Avery!