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!

Shoes?

Josh and I are not sure what to do...Our physical therapist told us that Will will most likely need bracing for his feet. His feet tend to roll inward, so he is walking on the inside of his ankles. She also told us that we need to put him in hard sole shoes so that he has more support because he likes to use his big toe alot for balancing (his big toes is VERY flexible). So she wanted us to talk to orthopedics when we went to Myelo Clinic last time. We talked with the doctor and he said that he would never brace a child as young as Will that we should wait until after he is walking and that soft soled shoes are the best way to go. So Josh and I are really confused as to what we should do. It makes sense to us to put him in hard sole shoes because that big toe does crazy things! We also think that it makes sense to give him extra support around his ankles to help keep them from rolling inward. Sigh...what to do...

Today Will had PT and she had a pair of the braces that another kid grew out of and she brought them in to just experiment. I thought that there was a definate change in his foot posture (he tends to stand with his feet far apart and toes pointing ourtward). He was standing with his feet closer together and toes pointing forward. So we kept the braces so that I could show them to Josh and we are going to the pedi. next week so I am going to talk to him about them.
I am also leaning toward the PT's opinion a bit more too because she has treated another child with RTS and knows what to expect and what to look for as far as what RTSweeties tend to do. The ortho and pedi have never treated another RTSweetie and their knowledge is limited.
Josh and I are going to go over all the options and make a decision, sooner or later...

Who knew buying shoes could be so difficult!

It's official...

he has caught a bug. He started with a runny nose yesterday and fever. He didn't feel well at all yesterday but I think that he is doing better today. I made the mistake of mentioning that we hadn't been to see the doctor for quit some time! Should have kept my mouth shut!

We have a busy day today. We have a birthday party at the zoo at noon. Then down to Perryville, MO for a party for Christopher at 4:30. Caroline is super excited about both events...I hope that brother can last the day.

What's going on?

I am not sure what is going on with Will. The night before last he woke up during the night (nothing unusual about that) and I noticed that he had vomitted in his bed. He cried for a bit then went back to sleep after we cleaned him and his bed up. Poor Mr. Cow got most of the mess but was as good as new after a cycle in the washer. Yesterday he acted fine, like normal so I just thought that it was a fluke that he got sick. Just had something that upset his belly. Then last night...he woke up in vomit again! The only difference between last night and the night before is that he would not stop crying. He cried most of the night and there was absolutely nothing Josh or I could do to console him. We tried everything...prevacid, thinking that he was having some reflux. motrin, thinking that he was teething. feeding him, thinking he was hungry. rocking him, thinking please stop crying! Anyway, you get the picture...nothing worked! Finally, we got him to go to sleep but even this morning he is not acting like himself.

I am beginning to think that he is constipated. Which is leading me to believe that the Milk of Mag. is not working. Cindy-what do you do for Natalie's constipation? Speaking of...I hear him grunting right now. Nothing is happening with the grunting, he must have just realized that he can make a new noise, who knows...

But the constipation doesn't explain the vomitting. I am not sure what that is all about. Maybe a bug that only causes you to vomit while sleeping, I don't know. Mr. Cow survived the night with no yucks, he looked relieved this morning!

We are staying home today to regroup from our long night...

(In case you thought that there was a huge cow in my washer and in Will's bed...Mr. Cow is the stuffed animal that Will sleeps with every night. He smiled and giggled yesterday when I gave him Mr. Cow after he had a bath, totally cute!)

Is it okay to pray for poop?

I did it!

Ok, I did it! I changed Will's g-button! I am not going to lie to ya, it was GROSS!! But I did it. I had to put a surenge into the side port on the button and pull out the water keeping a balloon inflated in his stomach and then the button just pulled right out. The hole where the button is is gross and food from his stomach came out. But I did it! The hole looked like an ear piercing hole, for lack of better discriptives. The changing of the button wasn't that big of a deal and they only made me do it once (and Josh just watched!) So I hope that we don't have to change it out any too soon!

They also use silver nitrate on his granulated tissue around the button site. It is now black and GROSS! They said if it is still there on Monday that we have to go back for some more. I guess that it stung when they put it on because he did not like it at all. They gave him some tylenol and he seems to be doing better now.

We also weighed him today and surprisingly he only weighed 15 pounds 6 ounces. Josh and I were a bit disappointed because we thought he was gaining alot. We both got the impression from the nurse that we need to be feeding him more. Sigh...I thought we were doing good. We see Dr. Rahman in 2 weeks for a well baby visit and we will see what he has to say about it.

I hope that everyone enjoys their Monday and tries to stay cool, good luck!

As I am typing this...

Caroline is laying on the floor watching cartoons and Will crawls over to her and gives her a "kiss" (I really think that he is trying to eat her hair, but she is calling it a kiss!) They are giggling and laughing, just having a great time. Caroline is hugging on Will and he is smiling and giggling. It has got to be one of the cutest things that I have ever seen. Now they have decided to dump a BIG basket of toys onto the floor, yikes!

We are staying home today to get some housework done. I need a housekeeper! I have laundry coming out of my ears!! Wish me luck...

Water Bugs

We went to Splash City (again) today and today Will was crawling around in the water and having a great time. There were a few really small bubblers in the baby pool today and Will had so much fun with them. He even put his face in the bubbler! It was really funny to watch him look for the water then to have it come up in his face, he would just giggle and laugh. Thought that I would share it with you all, I think that I may have a water bug on my hands!!

Water Bugs

We went to Splash City (again) today and today Will was crawling around in the water and having a great time. There were a few really small bubblers in the baby pool today and Will had so much fun with them. He even put his face in the bubbler! It was really funny to watch him look for the water then to have it come up in his face, he would just giggle and laugh. Thought that I would share it with you all, I think that I may have a water bug on my hands!!