last day

Today is the last day Caroline will be 4.




Tomorrow she will be a year older, a five year old. It makes a Momma weepy just thinking about it.

The Pumpkin Patch

Yesterday the kids and I went to my Aunt Lucy and Uncle Jim's house to visit their pumpkin patch! The kids had a blast. We met my sister, Leslie, Aaron and nephew Mikkah there. Caroline picked out a pumpkin for each member of our family, including a small one for Will. Will was having an off day and was not having any of the pumpkin business but I managed a few good pictures of him.


Will looking for his pumpkin.


The kids in front of the pumpkin patch sign (Uncle Jim made it!!). If you click on the picture to make it bigger you will be able to see that Cow is sitting on the hay bail with Will's pumpkin!


Caroline looking cute!


Mikkah in search of the perfect pumpkin.



After we were done picking pumpkins the kids got to play on their playground. Aunt Lucy and Uncle Jim's house is like a kids paradise! As a kid, I remember going there and never wanting to leave because it was so much fun, it was no different for my kids! There favorite part was the trampoline! Will LOVED it! Jaxon helped him out and he was giggling the entire time! Caroline had a great time jumping with cousin Trinity.

I just really liked this picture of Will. His eyes say it all.

No more...

Bottles!

Will has been bottle free for 4 days. Woo Hoo! I am so happy to be done with washing bottles!! We decided to drop it cold turkey. The first day was rough but he has been steadily getting better with each day. I am having to tube feed him more but I think that once he gets the hang of it I will be able to taper off. We decided to go cold turkey because Will has the ability to drink out of a sippy he just refused. He would drink apple juice out of a sippy with no issues but if I would put his milk in a sippy he would not drink it. It was a complete behavioral issue.

Since we have stopped the bottle, I have realized just how much of a comfort thing it was for him. I mean seriously, how many months upon months was I cramming a bottle in the poor child's face in order to get him to eat. Anytime he would whimper I would get his bottle for him. My mind was stuck in the "I have got to get his 24 ounces in him today", so every 2 minutes I was giving it to him. Poor kid.

So now we are past that. He is a big boy with a sippy cup! Way to go Will!!

So I know that you can't see the sippy in this picture but I thought he looked so cute in his overalls!

stuttering

Today when I picked Caroline up from school her teacher asked me if Caroline stuttered at home. I told her that she does and that it mostly happens when she is excited, in a large group of kids or when she is in a hurry. Her teacher nodded in agreement and said that is when she normally does it at school. Then her teacher said "if you need any help with that, just let me know". I said, "okay, thanks and have a great weekend".

I got to the van and the "Bad Mommy" dialogue started to play in my head. You know what I am talking about, the "maybe I need to have her evaluated by a speech therapist", "why have I not done anything about this before", "oh my gosh, it must be really bad if her teacher said if I needed help with that", "what kind of mother am I", "you need to pay more attention to Caroline and her needs", "you need to get it together", "this is your job!!", etc.

Next week when Ms. Patti comes for Will's speech therapy, I am going to ask her if she thinks I need to have Caroline evaluated. She has been around Caroline when she has done the stuttering, I have even asked her about it before. At that time, she just thought it was a phase that Caroline was going through. Kind of one of those things where her brain was working faster than her mouth (if that is even possible :-).

Has anyone else's kids stuttered at this age (4-5 years old)? Did they grow out of it? Did they require therapy?

Thanks ya'll!

"Syndrome Kid"

Today Will's hospital called me to schedule his sleep study.

We are having a sleep study to put my mind at ease. There are many RTSweeties that have severe sleep apnea and have shown no signs of having a problem while sleeping. Apnea also runs in the family. Will snores, not loud, but I can tell when he is sleeping by the sounds that he makes. It is just to rule out apnea and to put my mind at ease. I don't think that there are any problems, I just want to make sure.

Anyway...

The very friendly lady called to make the appointment. She asked a few questions, I had to spell Rubinstein Taybi for her (not uncommon for me to have to do this) and she asked why genetics was ordering the test. I told her the same things that I have told you.

She said, "I always find it so interesting when we have a 'syndrome kid' come in for a test".

I was stunned.

Did she just say that??

I politely told her that my 'syndrome kid's' name was William and left it at that. My child is not a syndrome, he is a person just like everyone else, who happens to have RTS. I could not believe that a medical professional could say something so insensitive and inappropriate. It was completely uncalled for.

I think that when we go to have the test done in October, I will mention this to the person in charge of the sleep study facility.

The happenings at Lilo and The Stitch

Well, lets see....what have we been up to.

Yesterday we went to see Will's GI doctor, Dr. Brady. She agreed to send a letter of appeal to our insurance company. We will see what happens.

Will has taken a liking to feeding himself. He started to refuse to eat anything that I would offer him because he wanted to hold the spoon. I finally just gave up and let him do it. I really had to just let go and let him get messy (I have issues with this). Here he is trying to eat applesauce. He definately has the right idea of using the spoon to scoop up the food but most of the time he just wanted to play with the applesauce and touch it. Which, I guess isn't such a bad thing, he is exploring his food.

Okay, so this next picture is kind of gross but I wanted to explain how Will eats. Here I offered Will some cheese crackers (which he LOVES by the way). This picture demonstrates what I mean when I say he puts it in his mouth, lets it get soggy, then lets it fall out of his mouth, not swallowing. He has a pile of cheese cracker remains. This is pretty typical of Will's feeding times, more on the tray than in his tummy. I don't think he swallowed any of the crackers, but he sure loved the flavor.

Caroline and Josh went to an air show on Saturday. I will let Josh post about that. But that is about it.

Insurance Battle update

Well, we are going to have to cancel the estim therapy for now. Our insurance will only cover 20 visits of speech therapy per year and since a speech pathologist does the estim therapy it is coded as speech therapy and counts towards our 20.

Our insurance company did say that the referring doctor could appeal. So we have an appointment with Dr. Brady on Monday to discuss his weight gain and the improvements that I have seen since starting the estim. After we have that visit, she will submit a letter to our insurance appealling their decision to only cover 20 visits.

I am feeling defeated. Before we started the therapy I called to verify coverage. The people that I spoke to never said anything about a maximum number of visits, they only said "yes, you have coverage". I think that it is being dishonest by omission if they do not give you all of the information when you call. They should have told me that when I called those 3 times!! It makes me angry that we started this therapy and are seeing improvements and now we have to stop because we can't pay for it. I feel like I am letting Will down, like I am not providing the best for him because I know that the estim will work if he gets enough of it.

I am still holding out hope that the appeals process will work but I have been told that it is highly unlikely that they will pay. It sucks.

Update

Today Will had 10 bites of applesauce with ketchup for lunch. And 10 bites of applesauce with ketchup for dinner. Are we on to something here??

A few things from today...

During therapy this morning Will ate pureed pears!! With ketchup on each bite!! Gross!

I have been having the hardest time getting him to eat pureed foods (baby foods), he is just not interested, will not open his mouth or spits it back out. So the therapists tried some ketchup, I thought "yeah, right" but he ate it. He took about 10 bites before he refused any more. He hasn't taken 10 bites of anything in a long time. So I guess I will be packing a bottle of ketchup to his feeding therapy tomorrow!!

Today Caroline was doing her usual...talking.

Me: "hey Ya-ya what are you talking about?"
Caroline: "Mom, why do you call me ya-ya?"
Me: "because you ya-ya too much"
Caroline: "what is ya-ya?"
Me: "talking"
Caroline: "You ya-ya a lot too when you talk on the phone to Aunt Andrea!!"
Me: "mmmm, okay"

She got me! The Stinker!

Ps. I don't ya-ya too much!!! Andrea, you can back me up on this one right??

Caroline draws

Caroline drew me this picture tonight. On the top in yellow (it is hard to see in the picture), it says "I heart mom" and under that she signed it "Caroline". See the arrow that I put on there (to help you see what I am talking about) it is pointing to a message. She has an "I" and a "heart" and then two eyes. I had no idea what it was and I had her read it to me and she said "I love your eyes!". If you look at the two people in the picture (me and Caroline) you will notice that one has brown eyes (Caroline) and the other has blue eyes (Me).

I thought it was a really good picture, she did a great job. And her attention to detail is amazing!

Insurance Battles

Today I have been battling the insurance company. Sigh. It is just not fun.

Our insurance coverage changed in July. Josh's company went with a new policy. Anyway...I want my old insurance back!!! Our old insurance company paid for everything! We paid our co pays and deductibles and that was it. It seems like our new insurance doesn't cover anything. nothing. nadda. nuttin.

When the GI doctor mentioned that Will would benefit from the estim therapy, I called the insurance company to see if we had coverage. I called three separate times with the procedure code and diagnoses codes, talked with three different people, all three representatives said that we had coverage. They said that they (the insurance company) would pay 90% of each bill and we would be responsible for 10% until we meet the $2000 out of pocket maximum, then the insurance company would pay 100%. That was all they said. I questioned, asked "are you sure"? Yep. Okay, Cool! Off we went with the therapy.

Now, we found out that the insurance will only pay for 20 visits of each type of therapy per year. So he is entitled to 20 visits of speech, 20 visits of occupational, 20 visits of physical and 20 visits of developmental therapies each year. What a joke. We are talking about a child that is going to have to have some sort of therapy until, until, well the end of time.

The only one that we are mostly concerned about is speech therapy. Will has Ms. Patti coming to our home once a week for speech therapy. The estim therapy is done by a speech pathologist so therefore considered speech therapy, even though it is swallowing/feeding therapy, which he does three times a week. It is not going to take long to reach our 20 visits.

Because of the Early Intervention program through the state of IL, the therapist that come to our home will continue. What our insurance doesn't pay, the state of IL will. So those therapies will not stop BUT because they bill our insurance first, they count towards our 20. Which I don't understand...the Early Intervention program is for "developmental delays" not medical. If we didn't have any insurance the state would pick up the entire tab but since we do, they bill them first. So, if Will would break his leg (God forbid) and would require physical therapy at the hospital, our insurance would not pay for it because they had already been billed for 20 physical therapy visits through Early Intervention. Will could get the physical therapy at home with the physical therapist with Early Intervention but not at the hospital. It just doesn't seem right that they are charging our insurance. But anyway...

The 20 visit maximum was NEVER mentioned to me during my three phone calls to the insurance company. I am still working on it but I am sure that Josh and I will not be able to swing the $1300 per visit for the estim. Yikes! I have called the GI doctor that referred us for the therapy and she is writing a letter of "medical necessity" so we are appealing our insurance company. I hope that it works and that they will pay for the therapy because I really think that it is helping. I have got my boxing gloves on and ready to step in the ring. We will see...

Will also drinks pediasure, a toddler "formula". He receives 100% of his daily nutrition from the pediasure, so it is a MUST have. Our old insurance covered it, no problems. Our new insurance, not so much. I have called 3 times and was told that it was covered all 3 times. Aperia (the home health supply folks that provide it for us) has called 3 times and told that it is NOT covered all 3 times. GGGRRRRR!!! So the very helpful lady at Aperia and I call the insurance company via a conference call and we both talk to them together. "Sam" said that we have coverage and that they will pay for it. So we will see if they pay for it. I am not holding my breath but I do have the reference number for our conversation with "Sam" so if they don't at least I have some ammunition.

I miss our old insurance that paid for everything and didn't have any maximums.

Still here.

I am still here. Sick. But still here. The kids and I all have colds. We came down with them on Sunday. Caroline sounds like a frog. Her voice is nearly gone, I would normally be excited about the fact that she can't talk at her normal volume and rate, but I feel bad for the girl. Even though her voice is not up to par, she continues to ya-ya. She has not been running a fever so I think that she is okay to go to school tomorrow. I don't know, should I send her to school with a cold? What are the rules on that, I have no idea??

Will is coughing and snotty, poor thing. Usually when Will gets sick I go on "high alert". "High Alert" as to whether or not he is wheezing, having trouble breathing, keeping hydrated, choking on secretions, all of which could land him in the hospital. But I am feeling pretty comfortable about his ability to keep hydrated and handle is secretions. He is drooling like a mad man, snotting like crazy, sneezing and coughing but still smiling!

Me, well, my throat hurts and my head is pounding. I felt really bad yesterday and I am feeling lots better today.

Josh left today for DC. He will be home on Thursday. Caroline made him a picture today that she wanted to take a picture of and email it to him. She said that it is a picture of her and Josh and they both have on crowns because she is the princess and he is the prince. Oh, and they are holding hands. We sent it in an email to Josh where she told me what to type. I let her type her own name, which see thought was soooo cool!! Gosh Darn, she is too cute!

Little Miss Ya Ya

Today Caroline talked from the time that she woke up until the time she went to bed (I have even heard her talking in her sleep). I am not kidding. My only saving grace was the three hours that she was at school.

At about 3pm, I had a headache, my brain was fried and my ears were bleeding (not really but you get the picture) I set the timer on the stove for five minutes and told her that she couldn't talk to until the buzzer went off. She couldn't do it.

The thing is...she doesn't talk about any thing important. Half the time, I have no idea what she is even talking about! She is just talking to talk. When she is talking too much I ask her to please stop Ya Yaing. To which she replies "I DO NOT ya ya MOM!!" Will it ever end?? Do all girls talk this much? Is it wrong that I sometimes just want her to stop talking!!??

Isn't it kind of ironic that I have one child that talks too much and the other child I desperately pray for him to talk?

Happy Birthday Daddy!

Today Josh turned 30!!! He didn't do what I did on my 30th birthday (like cry in my room all day!) he went to work and has acted like it is no big deal! He could seriously care less.

The kids and I bought him a cake today on our way home from therapy. Caroline picked it out. And we sang "happy birthday" and ate cake after dinner.

HAPPY BIRTHDAY DADDY!!!

Pictures of Estim therapy today

Today we had estim therapy (feeding therapy). I had promised you pictures before and today I remembered my camera!!

This is Will after Jeannie gets him all hooked up. It is only tape on his face, nothing hurts. He sits really nicely while she sticks all of his stickers on. He has two electrodes on each cheek and then two under his chin. All of the little wires lead to a little remote control looking thing where Jeannie controls the pulses that are sent to the electrodes.

Ready, Set, GO!!

Once he is all set to go, Jeannie does some exercises for his mouth. Here she is using his "z-vibe", it is a gadget that has a tip on it that vibrates. After they do some of this then she starts feeding him. I didn't take any pictures of that, sorry. Will is VERY motivated by Cheetos and apple juice, he will do anything for them! Jeannie is so nice and gentle with Will. We are very lucky to have her for this therapy.

Disney on Ice

Josh and I took Caroline to Disney on Ice today. We went with my sister, Leslie and her boyfriend Aaron and my nephew Mikkah. The kids had a great time. They were all dressed for the show. Caroline was sporting her Minnie Mouse ears, Cinderella shirt and light-up wand.

Mikkah is a huge Buzz Lightyear fan. Yes, it was 85 degrees outside and he was wearing snowboots! He wears them all the time! Why? Because they have Buzz Lightyear on them!! They are the only things that he will put on his feet. You gotta love two year olds!


Here he is with his "Dash" mask on. OMG, the kid cracks me up!


During intermission the power went out. It was pitch black. I had to go to the restroom by using my cellphone to light the way! They had to cancel the rest of the show. We are not sure if we will get our money back for our tickets or if we will get tickets to a different show. We were bummed that we didn't get to see the entire show. The kids had a good time anyway, that is all that matters!

The First Day...

She went to school today! She was so excited. She wanted to wear her new shoes and requested to wear her Lilo and Stitch shirt. It is raining cats and dogs here so we took our pictures in front of the fireplace this morning. When I dropped her off there was no looking back, her and friend Lexi gave each other a hug when they saw each other, it was so cute! They have not seen each other since the last day of school in May. She is so happy to be at school with her friends and is really excited about learning. It is going to be a great year! Her teacher, Mrs. Cathy is great and is so good with the kids. I can't believe that she is going to be 5 in less than a month!! Yikes!

Games...

Where's Will?????



There He is!!!



What a fun game!

First Day of School Blues...

Today is Caroline's first day of preschool. She will not be going today. She is sick. She is VERY upset that she will not be going to school and seeing her friends. Poor girl, she has only been looking forward to this day since the last day of school in May.


So instead of the annual pretty dress and new shoes, today we are opting for pajamas and a blanket. She is not amused. She keeps telling me that she is feeling better and should go to school...maybe tomorrow. Last year Caroline didn't go to school on the first day either. But we did our first day of school photoshoot on the third day of school. Today we took our first day of school pictures inside from the couch. Hopefully tomorrow we will be able to get some pictures before school on the porch.





Last year, she missed the first day of school because we were at Disney World having breakfast with Cinderella. This year she is missing school but it is just not as fun!