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.
Sunday, December 2, 2007
Thursday, November 29, 2007
Tuesday, November 27, 2007
Tuesday, November 20, 2007
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!
Tuesday, November 13, 2007
Sunday, November 11, 2007
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...
Thursday, November 8, 2007
Wednesday, November 7, 2007
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! :-)
Tuesday, November 6, 2007
Oh, he also weighed 16 pounds 10 ounces today!
Monday, November 5, 2007
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.
Sunday, November 4, 2007
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))
Friday, November 2, 2007
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!)
Thursday, October 25, 2007
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!
Monday, October 22, 2007
Thursday, October 18, 2007
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...
Monday, October 15, 2007
Noah, have a fabulous birthday! We love you and hope to see some pictures of the chocolate cake in your EARS!!!
Thursday, October 11, 2007
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!
Tuesday, September 25, 2007
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!!
Wednesday, September 19, 2007
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!
Friday, September 7, 2007
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!
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.
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!
Saturday, September 1, 2007
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!
Friday, August 31, 2007
Thought that I would share his great smile to start off a great weekend!
Thursday, August 30, 2007
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!
Tuesday, August 28, 2007
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!
Thursday, August 23, 2007
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!
Tuesday, August 21, 2007
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...
Wednesday, August 15, 2007
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!