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.

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!

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!

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!

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!!

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!

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!

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!

http://www.elfyourself.com/?id=1308646049

Oh, make sure that your volume is on!

Enjoy!

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. :-)

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!

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... www.bilibo.com

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 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.

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!

Watching Shrek

Last night there was a Shrek Christmas show on TV. I didn't really like the content of the show but the kids liked watching it. Will was glued to the TV, it was pretty funny. I have never really seen him watch TV like he did, maybe it was the big green oger. Here are pictures of the kids watching the show.

First Blog!!

Well, here it is...our new blog! I have decided to change over Will's caringbridge website so that I can add more pictures! I am going to be adding pictures more often through the blog. I also know that some people had trouble viewing the caringbridge site at times, so I hope that with the new blog it is easier. I hope that everyone enjoys the new blog.

Getting Ready...

Hi everyone!
I haven't posted in awhile so I wanted to let you all know that everything is going well. We have not had any vomitting issues this past week since changing the formula. We are very pleased that he has not been getting sick with his feedings.
Caroline doesn't have school this week, which is good because she has come down with a cold. She has a runny nose, cough and sneezing. I have been giving her medicine and she seems to be doing well.
We are gearing up for the holiday season. I am ready for some turkey on Thursday! We will be traveling to Sparta. We are going to eat lunch with Grammy Abell and the rest of the family there. Then we are going to stop in at Grandma Forcum's house to visit my Dad and all of his family. Then to Grammy and Papa Pillers house for supper. Whew....that's alot of TURKEY!!!!
The kids are going to stay the night at my Mom's house on Thursday because I am planning on being one of those crazy people shopping at 4am! My friends (Laura B and Laura D) are going to go too so we are making it a day and I am sad to report that I am in serious need of retail therapy! LOL! I am looking forward to the day, it should be fun!
Everyone have a Happy Thanksgiving! Oh, I forgot to mention that at school last week Caroline's class made a poster with all of the things that they were thankful for. Each child got to list 2 things and next to Caroline's name she had that she was thankful for DisneyWorld and her bedroom. I thought that it was too cute!
((Hugs))

What a Day

Today we had our appointment with ortho. The appointment went well. We only had to go uptown, we had the appointment at Glennon Care, which is a clinic in Maryville with Cardinal Glennon doctors. It was great to not have to drive to StL, expecially with the traffic! Anyway, we saw Dr. Engle and she was great. I told her about my concerns of Will's ankles turning in while standing and also about the popping in his hips, ankles and knees. She decided to have x-rays done of his hips and feet. We did those x-rays at Anderson Hospital (never again!!) We waited 1 hour and 15 minutes in the waiting room, with both kids, by myself, Will having no nap, need I go on! Then we had to go back to the doctor office, which is right next door to the hospital but I still had to put both kids into their carseats, drive to the doctor's office then get both kids out of their carseats, etc. to go over the x-rays with her. After going over everything, she decided that the right thing to do is to get him in some braces to keep his ankles straight and keep is big toe from curling under while standing. We will be going through Early Intervention to get he braces through the State of IL. They will pay for the braces because we had them included in his ISFP. So it will take between 6-8 weeks to get them. I am glad that we decided to get the second opinion, she seemed to reason like Josh and I did. So know we have to be fitted for the braces and wait until they come in.

Something new

I hope that everyone had a nice weekend.
We have tried some different things with Will's feeding. We have been giving him only 2 ounces at a time through the tube and we have also switched to the ready serve type of formula (the type that is already mixed/more expensive). I believe that the changes have made a difference. He seems to be doing well. He only threw up a small amount today. We will give this a shot for awhile and see how it goes. I will keep you all posted....
On Tuesday we have an appointment with Orthopedics. Will sees ortho because of his tethered spinal cord release surgery. He has follow ups with ortho every 6 months. The last time we saw ortho, I sort of questioned the reasoning of the doctor. You remember the whole shoe issue...Anyway, we are getting a second opinion. I am still concerned about Will turning his ankles in while standing. He likes to stand on the insides of his ankles. I just think that it would be easier to correct now rather than later. He also "pops" alot. His hips, knees and ankles are always popping, even when he is not weight barring. So I am concerned that the popping could cause damage to his joints in the future. I was not very comfortable with the ortho that we had seen in the past so I requested to have the second opinion. We will see how it goes...

Long Day

Well, he slept through the night, which was great for me!! But today he hasn't been eating really well (nothing new) but with the time change he is totally messed up on his feeding schedule. He is off the schedule by one bottle (by this time of the day we should be on bottle #5 and we are only on #4) He was getting tired so I was going to tube him the rest of bottle #4, which was about 3 ounces. Just finished tubing when he started to vomit, cleaned that up, changed his clothes and thought he was done. Ten minutes later, the mother load of vomit! It was so bad that I just sat him in the kitchen sink. So the entire bottle #4 came out, so he only downed 3 bottles, 12 ounces. Not good! So I have had two showers today and Will has had two baths. My carpet has been shampooed. My floor has been mopped, twice. I am done...for today ;-)

Funny Thing...

happened while registering Will for his upper GI yesterday. It was the first time that we have had any procedures done at St. John's. The lady called our number and we walked over to her desk and sat down. She asked if this was William, I said yes and spelled our last name for her. She typed it all into the computer then got a really puzzled look on her face. She said "my computer says that William is in his seventies". I thought about it for a minute then it hit me, that's grandpa! Grandpa Bill Pillers is a patient at St. John's also! We have never had this happen before because Will usually only goes to Cardinal Glennon, and I don't think that Grandpa Bill would be a patient there!
After I explained to the women that the William Pillers that she has in her computer is Will's grandpa, she just smiled and asked for his middle initial. I guess she didn't think it was as cute as I did! Here is a picture of Grandpa Bill and Will at Will's birthday party in August.
Update on Will, he did the crying spell last night again. We gave him medicine for reflux but it didn't seem to help. He finally just fell asleep but it was a long night, again!
Josh left for CA today, he will be there for two nights for work. I hope that Will decides to sleep well tonight! :-)

Everything normal

The upper GI went well. Everything came back normal, no obstructions and only a small amount of reflux. So the doctor thinks that Will just can't handle the amount that we are giving him. He usually gets 24 ounces a day but we are going to cut him down to 20 ounces (one less bottle) a day. The doctor thinks that by the end of the day he just can't take anymore liquids in and therefore vomitting. We are adding extra calories to his formula (an extra half scoop of formula and one scoop of duocal) making his formula 30 calories per ounce verses regular formula which is 20 calories per ounce. So she doesn't think that there is going to be a problem with decreasing the amount per day. We will see what happens...
Oh, he also weighed 16 pounds 10 ounces today!

Not so good

The flu shots didn't go so well :-\ Caroline was screaming and kicking. It took me and two other nurses to hold her down, then after it was already done she said "I know it is going to hurt" When I told her it was already over, she just said "oh". Then she asked if she was brave and the nurse told her no! I told her that she can for sure be brave next time to which she gave me the look of "there is not going to be a next time!".
I called the GI doctor today because of all of the vomitting that Will has been doing the last few weeks. She wants him to have an upper GI again to make sure that everything is okay. We are scheduled to do that tomorrow at 9am. Then we will see the doctor after we have the test done and go over what it shows.
I will let everyone know what happens tomorrow.

Wanted to update you all on Will. He is doing better, I believe that we have turned the corner on this cold. He was up for about 3 hours last night crying from midnight to 3am. It was another night with crying and there being nothing that I could do to soothe him. But other than having a long night he is doing well today. Thanks for all of your prayers.
Tomorrow we are going to the pedi (Dr. Rahman) or as Caroline would call him Dr. ComeOn for the kids flu vaccines. I am going to be taking the kids by myself because Josh has to work. So please pray that Caroline does better with this vaccine than the last one she got in August. If you remember, she was kicking and screaming and I had to hold her down (it wasn't pretty). So lets pray that the poor little girl makes it through (and Mommy too!).
Teresa (Josh's little sister) got engaged this weekend!!! Congratulations Teresa and Todd!!! ((HUGS))

First Cold of the Season

Hi All-
It is official, Will has his first cold of the season! He is very conjested and just not feeling well. And thanks to all of the idiot parents in the world, they have taken all children's medicine off of the shelves so there is nothing that I can buy to help him get some relief. Idiots! Don't even get me started on that subject!
He has been having trouble eating because he can't breathe through his nose so as a result he has been getting most feedings through the tube. He has also been vomitting more than usual too. I just don't think that he can handle large quanities through the tube (large quanity being 4 ounces). So when I have to feed him I have to give him 2 ounces then wait 30 minutes and give him the other 2 ounces. But the vomitting can still happen, it just depends on what time of day it is, I think. He vomits more in the evening but not so much during the day. Weird! He has been EXTREMELY whiny and wants to be held all the time. Needless to say, I have about had it. But I hope that he will be getting better soon. We go to the doctor on Monday for flu shots (Lord help me with Caroline, she told me after her last shot that she would not be going to k-garten because she was never going to get a shot again!) so if he is not better by then at least he can see the doc.
On another note, Caroline had a great time trick or treating! She got so much candy that she asked if I could put some of her candy in my pockets so that her bag would not be so heavy! She was most excited about recieving two cans of soda and a bag of microwave popcorn as treats! She is my child!
Pray for Will's speedy recovery from this cold (my arms are getting tired from holding him all day and night and my house looks like something exploded in it!)

At the Dentist

I took Will to the dentist yesterday and well, she really couldn't tell me anything. They took x-rays to make sure that he had perminant teeth, which he does. We could also see the other baby teeth on the x-ray and they all looked to be in the right spot, so that is good. She just said that we would have to keep an eye on the tooth that is growing in funny. So nothing to really report other than we need to start brushing Will's 6 teeth. I told her to wish me luck on that one!
Last night we took the kids to the Pumpkin Prowl at the zoo. The zoo was open until 9pm for Halloween fun. Caroline wore her Tinkerbell costume. We didn't put Will in his Peter Pan costume because we didn't want him to get sick before Trick or Treat! We just dressed him really warm. Caroline had a great time. The zoo was decorated for halloween and their was a craft project for her to do. She just thought that it was neat that we got to eat dinner at the zoo!

Gaining weight!

Went to the dietician today. Will weighed 16 pounds 5 ounces. He had gained 5 ounces in one month, our goal was 8 ounces. We are now going to add something called duocal to his formula. Normal formula has 20 calories per ounce. We add a half of scoop more of formula to every four ounce bottle making each ounce 24 calories. By adding the duocal we are going to make each ounce 30 calories which should get him gaining. The dietician would like Will to be up to 18 pounds, that is our goal. By getting him up to 18 pounds he would be in the 50 percential for weight and height on the RTS growth chart (RTSweeties have their very own growth charts!). We go back in a month to check his weight again.

Teeth Troubles

Good Morning!
We are having some teeth troubles!! I told you before that Will is getting about 4 new teeth. He has his top front two teeth and the tooth right next to those are starting to worry me. The tooth is coming in sideways (what should be the side of the tooth is pointing to the front of his mouth) and almost in front of the other tooth. I think that I am going to take him to a dentist and see what they say. It may be hurting him, it is really close to the front tooth and may be pushing it.
He has also started to bite. He made Caroline cry twice yesterday because he bit her on the leg. He is a very oral kid, meaning he puts anything and everything in his mouth. Plus, he is cutting teeth. So I am not sure if this is a teething issue or a behavior issue. I really don't think that he is trying to hurt her, maybe just wants to see what she tastes like (chicken?) I tell him no but he just looks at me and smiles! Then I have to laugh because he is sooo cute meanwhile, Caroline is crying! Sigh. What to do, what to do...

Happy Birthday Noah!!!

Today is Will's very best friend Noah's 1st Birthday! You all will remember Noah and his family, they are the family that we met while at Disney. And Will could not stop kissing him!! Say a little prayer for Noah today on his very special birthday!
Noah, have a fabulous birthday! We love you and hope to see some pictures of the chocolate cake in your EARS!!!
XXXXOOOOXXXX

Here is a picture of Noah and Will taken when we met at DisneyWorld.

New Shoes

It has been awhile since I have posted, which is a good thing, right!? Will has been doing pretty well. He has been working on two more new teeth. Yikes! So he has been taking Motrin like mad!
Last night was a bad night. He woke up around 10:30pm and did not go back to sleep until about 3am. He was crying and screaming but there was nothing that I could do. I gave him Motrin, Prevacid (for reflux, stomach acid), orajel and I tried to feed him. He wanted nothing to do with it. So we just sat there and cried. It was a rough night. I hope that he does better tonight, but I am not going to hold my breathe. I still have not figured out what the problem was last night but I hope that he is over it.
We have an appointment with the Dietition on Monday. We are curious to see how much he weighs, like usual. He is really liking the avacodo right now, so that is really good.
During all of Will's therapy sessions lately the therapists have been doing their evaluations. They have to evaluate Will every 6 months then we have a meeting with the service coordinator and all of the therapists. We all discuss our goals for Will and what he has achieved. We find out where he is developmentally and things that we need to work on, etc. We are going to be having our meeting on the 23rd.
We went shopping yesterday...on the list was new shoes for Will and a halloween costume for Caroline. Will got a pair of Stride Rite shoes that are to give him support around his ankles and they only cost a small fortune. But I think he will be walking soon! So the fortune is worth it! Here is a picture of Will trying them out!

Caroline came home with a Tinkerbell costume along with Tinkerbell wings and shoes to match! The kids are going to be Tinkerbell and Peter Pan. Don't worry, I will be taking pictures! Caroline thinks that Josh should be Captain Hook and I should be Wendy. We will have to see about that, the jury is still out!

Been awhile

Good Morning Everyone!
So sorry that I have not been keeping up with my journaling duties, I hope that you all forgive me! :-)

Will has been doing really well. He has started to "talk" alot more resently. He looked at me yesterday and said "MaMa", I was very happy about that! He also says "DaDa" when Josh enters the room or comes home from work. He has also started to hold up his arms when he wants to be picked up. He wants to be held alot so he gets tons of practice with this one! He is now banging his hands on his tray while sitting in his highchair and using his pointing finger and thumb to pick up snacks on his tray. All of these accomplishments are huge! We are very proud of William and his success.

He has also been eating a bit better. But we are still struggling with it.

His top two teeth have started to come in, so he has been really grumpy! He hasn't been sleeping very well either, so we all haven't been sleeping well.

We have a day packed full of therapy today, so we are going to be busy!!

New Weight

So, I have totally not been with it! Sorry, I haven't posted anything in over a week!!

Will has been doing really well. We went to see a nutritionist at Dr. Brady's office last Monday. Drum roll please.....Will weighs 16 pounds!!! We have finally gotten over the 15 pound hump! Yippie!! She gave us some tips on how to get him to eat real food. We have been trying some of them with some success. He really liked cooked carrots, not so much with the pears.
We go back to see her in a month, so we can make sure that Will is still gaining weight and hopefully eating some real food better.

That is all I got for now....Later gators!

DisneyWorld, part 2

On Tuesday we went to Magic Kingdom to have breakfast at Cinderella's Royal Table. Upon entering the castle, Caroline got to meet Cinderella, have her picture taken with her and had her sign her autograph book. Caroline was given a magic wand and Will was given was given a sword and both were given a wishing star (a blue plastic star that said "Wishing Star" on it) We then had breakfast and the waitresses called us Lord, Lady, Princess and Prince (it was really cute). They brought Caroline out a birthday cake and everyone sang Happy Birthday to her. Then ALL of the princesses came out and each one of them came to our table for a photo and to sign her book, even the Fairy Godmother came out. At the end of the breakfast all the Prince and Princesses were asked to stand up and hold their wishing stars and the wands/swords. The kids then said the magic words and wished on their stars, OMG it was the cutest thing ever!!
We then went a rode the rides that Caroline wanted to ride again and the ones that we missed the first day. She also got her picture taken with Belle who was wearing her yellow dress! It was one of the highlights of the day for Caroline! We then went to MGM where we saw the Ariel show, Beauty and the Beast live on Stage (where we got VIP seating!, front row!!) and Playhouse Disney live on Stage. All of the shows the kids LOVED! Caroline got to stand up and dance at the playhouse disney show and see Bear and the Big Blue house. We then watched a parade and she got to see lots of Characters and the evil queen talked to her!! Caroline was really scared but really excited at the same time! She then had her picture taken with Sulley (Monsters, INC), Pinocco and Minnie Mouse. We then went back to the hotel and went swimming because we were all really HOT!!!
On Wednesday we let Caroline go shopping for suvineers. She had fun picking out what she wanted and what to get for Will, Mikkah and James. She loves to shop, she is a total girl! Then we flew home! And that was our trip! We had a blast! Most importantly Caroline had a magical time and that was what we were going for!

DisneyWorld, part 1

We made it home from Disney and we all had a fabulous time! Caroline was so surprised and it was great!
We woke her up at 4am on Sunday morning and told her that we were going on a surprise birthday vacation. She didn’t ask too many questions, we told her that we had to ride on an airplane and that we needed too get ready to go.
We got to the hotel to check in and she still had no clue what was going on. They gave her a button that said “Happy Birthday Caroline”. We then headed to Magic Kingdom.

We took Caroline to main street and showed her the castle and she still didn’t get it! Remember, she had no idea that Disney even existed; she only thought it was in the movies. When Josh told her who lived there, she was smiling and really excited. Here is a picture of Josh telling Caroline where we were at.

We went and rode several rides and met several characters (Ariel, Snow White, Alladin, The Genie, Jasmine, Timon, Rafiki and Belle). We watched a parade and she got to see TONS of characters.

We went to Storytime with Belle where Belle tells the story of the Beauty and the Beast. She asked several kids from the audience to come up on stage and help her tell the story and Caroline was chosen to be Chip. After the show Caroline was able to have her picture taken with Belle and had her sign her autograph book.

We then went to ride Cinderella’s Carousel one more time before leaving for the day. While standing in line a “Dream Maker” came up to Caroline and Josh and started talking to them. She asked what all rides they had rode and if there was anything that they didn’t get to ride. Josh and I had been avoiding the Dumbo ride all day long because the line was outrageously long. Josh told her that and she said that she would take them over to the Dumbo ride after they rode the Carousel. Then she made Caroline a princess by sprinkling her with “pixie dust” and giving her a badge to wear. Then Caroline was moved to the front of the line and was placed on Cinderella’s horse for the ride. Before the ride started the Dream Maker announced to everyone that it was Caroline’s birthday and that she was a princess and they need to bough when they saw her in the park. Caroline was all grins!
She then walked them to the front of the line at the Dumbo ride. Where the Dream Maker announced that Caroline was the pilot of the ride. While Caroline and Josh were riding Dumbo, the Dream Maker came over to me and gave me a certificate for 3 free ice creams! We had our ice cream and started to leave the park, while walking out we stopped to watch a show in front of the Castle where she was able to see all of the princesses and the princes dance with Mickey and the gang. Magical day number 1!
On Monday we went to Animal Kingdom where we rode the safari, watched the Lion King show and Finding Nemo the musical. The kids both LOVED the shows! Caroline got to meet Goofy, Pluto, Mickey, Minnie and Donald Duck and they all signed her autograph book. We then went to Downtown Disney where we met up with another family who has a child with RTS. It was so nice talk with a family who has been going through the same things as us and we could totally relate with one another. Will fell in LOVE with Noah right away, he grabbed his face and started kissing him. It was the cutest thing ever! It was so wonderful to get to met Kristi, Tom and Noah. Noah is such an angel and we are all blessed to have met them. I am so grateful that have been given the chance to hold Noah and love on him! He is precious! Thank you, Tom and Kristi for driving an hour to have dinner with us!
We then went back to the hotel and the staff had delivered balloons and a card with a picture signed by Cinderella for Caroline. They also delivered a package that I made up before we left for the trip with a Cinderella doll, a Cinderella shirt, an Ariel shirt, an Ariel coin purse, stickers, a photo album and other things. Caroline was so excited because she thought that Cinderella had actually been in our room! It was really cute! Magical day number 2!

Leaving Town

I wanted to let you all know that we will be leaving town tomorrow morning until Wednesday night. We are taking Will and Caroline on a surprise trip to Disney to celebrate Caroline's 4th birthday a little early. We haven't told Caroline anything, she doesn't even know we are going anywhere (you would think that the suitcases in my room would give it away, but she hasn't asked anything about it). Caroline is really into the princesses right now and Josh and I wanted to do something really special for her. She doesn't even know that DisneyWorld exsists and we are not going to tell her anything until we are walking up to the castle. She is seriously going to flip. On Tuesday morning we are going to be having breakfast with Cinderella (along with about 100 other people) at the castle. We have told them that we are celebrating her birthday and they are going to send out a birthday cake and everything. I have also done some secret shopping and purchased some things that we have wrapped and are going to have the hotel send up to our room with a card that says it is from the Princesses. Again, flipping! Josh and I are really looking forward to the trip and can't wait to see her face when she is face to face with Cinderella! Priceless! I am going to be taking TONS of pictures!
Also while we are there we are going to be meeting up with another family with a RTS child. Kristi (the mom) and I have communicated via e-mail through an RTS listserv online for almost a year now. They live in Jacksonville, FL and are going to drive to Orlando for a night and have dinner with us. I am also going to be taking TONS of pictures of Noah and Will. Noah is 10 months old so Kristi and I joined the listserv at about the same time. We are really excited about meeting their family.
I will post new pictures when we get home and let you all know about the fabulous time that we had! Oh, in case you were wondering, I am packing extra underware for Caroline because I believe that she could possibly pee her pants! Love ya!
Oh, I almost forgot...WE HAD POOP!!! Will pooped TWICE (you read that right!!) yesterday! I think that the benefiber may be working! Thanks for the prayers and keep praying, it works!

Blue Man Group?

I have to tell you all what Will did today. He was being really quiet so I thought that he might be getting into something, I thought I would probably find him eating the dog food, AGAIN! I walked into the kitchen and said his name and he looked at me with the face you see in the picture! I about fell out laughing, it was soooo cute. He had gotten into Caroline's markers that she left on the floor. He got the cap off and put it in his mouth so now he is sporting the blue mustache! When I asked him what he was doing he gave me that great smile! He knew he had found a find! LOL!
Thought that I would share his great smile to start off a great weekend!

Praying for Poop

So, we have be doing Milk of Mag. and benafiber like crazy all week with only little to show for it. I hope that it starts working soon, Will is miserable. I have tried the glycerian supp. and nothing happened. I don't think that is normal, but seriously nothing happened.

He is also teething. I think that he is working on several teeth. So he has not been too happy about that either. Motrin seems to be helping him with the pain. He can't do anything easily!

We are going to meet Caroline's preschool teacher today. They are having an open house so that the kids can meet their teacher and see their classroom. Her teacher's name is Ms. Abby and Caroline is really excited to meet her. School starts next week!

Keep praying for poop!

Catching you up

Well, Josh, William and I have had several LONG nights in a row. He has been waking up several times a night in crying fits and there is nothing that Josh and I can do. I gave him some Milk of Mag. this morning because I think that he is constipated. I hope that he gets some relief soon, I feel bad for the little guy. We are giving him Benefiber everyday but I guess the extra formula in his bottles are making a difference in his going and/or not going.

The granulated tissue is not getting any better either. I am going to have to use some of the silver nitrate on it, but I am going to wait until Josh gets home from work so that he can help me to hold him still. Wish me luck!

He also woke up this morning with a rash all over his tummy too. I am not sure what it is from we have not given him anything new to eat. So I am not sure...I am just going to keep my eye on it and see what it does.

Grrr...pray for poop, again!

Doctor Visits

Ok, so Caroline didn't do that great with the whole shot thing but we all survived. She had to get one and Will had to get three. Caroline got hers first and thought about holding Will's hand when he got his but then said..."I can't look!!" and stood behind the nurse.

You might see the kids in some Cardinal Glennon publications! There was a lady there taking pictures of the doctors and nurses interacting with the kids. Dr. Rahman's office is not at Cardinal Glennon but they are in the same SSM group. Caroline and Will had their picture taken with Dr. Rahman, it was really cute!

Yesterdays visit with Dr. Brady could not have gone any better! Josh and I both really liked her. She first asked us what we came in for and I told her that we wanted a plan for Will's feeding and weight gain, she said okay and gave us one!

We are going to add a half a scoop more of formula to each of his bottles a day (to add more calories). So instead of 2 scoops per four ounces as the label says, we are going to add 2 1/2 scoops to the four ounces. We are also going to start giving him Benafiber (2 teaspoons a day) to help with the constipation issue.

We have to take Will in for a weight check in two weeks to see if the adding the half scoop is indeed adding weight to him. I am just going to take him into Dr. Rahman's office and they are going to fax his weight to Dr. Brady so that I don't have to drive all the way to St. John's.

Most babies stop drinking formula when they turn a year old, but Dr. Brady said that Will should be on formula until he is at least 16 months old. At that time she is going to consider starting him on whole milk, but right now he needs the vitamins and minerals that are in the formula.

Dr. Brady was wonderful! Josh and I left the appointment feeling great, like we had accomplished something! First time EVER!!! She said that she doesn't need to see him back for 6 months. If he is gaining weight like he should then all should be good. Yippie!

Today we are staying home and cleaning house, that housekeeper still hasn't shown up! LOL!

Boy, we have a busy week!!

Yesterday we went to Cardinal Glennon to surgery clinic for our third round of silver nitrate. They sent me home with a bag full of the silver nitrate sticks and told me to do it every 3-4 days until it is all gone. Yippie! Also learned that Will's wonderful sergeon, Dr. Coln is moving to St. John's Hospital. Normally I would be so sad about this but we are going to be a St. John's for GI, so I have no problem seeing Dr. Coln there too!! We are going to take Will to see Dr. Linda Brady, new GI doctor, at St. John's. We have heard nothing but wonderful things about Dr. Brady and are really excited to meet her. And since Dr. Coln put in the g-tube we will be able to see both Doctors together if need be at St. John's.

Ok, back to the busy week...Today I have to take both kids to see Dr. Rahman (pedi.) Both Kiddos are due for a well baby visit and both kiddos are due for some shots! Yippie! I am not so much worried about Will, but Caroline is a whole other story! I literally had to sit on her to hold her still to get a splinter out of her foot. She was screaming her head off and out of control. So, a nurse coming at her with some needles should be interesting. But she has to have a physical before school starts, so I don't see us leaving the doctor's office without some shots.

Tomorrow is our appointment with Dr. Brady!! I can't wait! Never have I been this excited about a GI appointment. But I have heard so many great things about her, I really feel that we may walk away from this appointment with a feeding plan. I am so upset with the GI doctors at CG! They put the g-tube in and we haven't heard anything from them since!! How crazy is that! Not a follow up appointment, not a call, not a nothing! Now you know why we are going to St. John's! Anyway, I will let you all know how the appointment goes...

Aunt Leslie and Mikkah are also coming to visit today! We can't wait! Will also has a therapy appointment this afternoon when we get home from the doctor appointment (come to think of it, I might just cancel that one). Tomorrow we have a playdate at Avery's and Ms. Susie's house before the doctor appointment. Did I mention that we are busy! LOL!!

I will let you all know how the appointments go...You may be able to hear Caroline scream if you are outside around 1pm today! Poor little girl! Talk to you all soon...

((Hugs))

Happy Birthday William!!!

Today my little man turns 1 year old, I can hardly believe it. What a year it has been...
Diagnosed with RTS at 9 days old, on that day going through several ultrasounds, eeg, a skeletal survey and many needle pricks. He has had 3 surgeries this past year (tethered spinal cord release, malrotation of the intestine, and g-tube placement) and 5 hospital stays (I think). We have been to the pediatrician more times then I could even count (I am sure that our insurance would be able to give an accurate count!) and many specialists. Will has therapy sessions every week that he has been doing since he was 2 months old. His favorite toy is Caroline! He LOVES to put everything in his mouth. He loves music and bouncing (he is a Tiger at heart!) He is cruising the furniture and crawls really fast! He also loves to get into the kitchen cabinets and eat the dog food. He sits here this morning smiling from ear to ear.
My little man is the strongest guy that I know, he has been through so much yet is the happiest child I have ever seen. He lights up the room. I am absolutely blessed and honored that God chose me to be William's mommy.
I wanted to thank all of you, our family and friends who have given us your prayers and thoughts during this past year. Without all of you I am not sure how Josh and I would have made it through. Thank you from the bottom of our hearts, we love you all and appriaciate all that you have done for us and our family. We can not thank you all enough.
Everyone have a piece of birthday cake today and celebrate William's birthday! Much love to you all!

We had a birthday party for Will, Lil' Buckaroo themed. Will was the sheriff! Here is a picture of him with his birthday cupcake, he didn't really care for it.

Here is a picture of the kids after the pinata was broken open. They all walked away with tons of loot! The party was a success and everyone had a great time. Happy First Birthday William!