Wednesday, January 30, 2008

Rylie's 5 year check up

Rylie had her 5 year check up last week. Everything went well. She is 39 lbs and 38 3/4 inches. The pediatrician and I discuss what specialist Rylie should be seeing yearly. She doesn't see the need for Rylie to see the GI doctor anymore since she hasn't had any problems since birth(anal stenosis). Every year I take Rylie to see the GI doctor. He hardly even looks at Rylie, then he ask me a few questions and says,see you next year. It's just a waste of time. I was also wondering if Rylie should be seeing an orthopedist, but the ped said not unless there was any concerns which there aren't. She just needs to have her neck X-rayed for AAI. She will need to get this x-ray again this year. Last time she had it done she was 3 years old and all was well. So now once a year she will need to see the eye doctor. And I want her to see the ENT every three months. Thats not bad. I'm very thankful!! She also got her annual bloodwork done on monday. They tested her CBC(red and white blood cells), and Thyroid. The doctor called tonight and said her only concern was that her MCV levels were slightly elevated. Normal range for her age is 73-87 and Rylie's were 90.9. This could mean a vitamin deficiancy, in folic acid or B-12, but it's unlikely in a child unless they never ate meat(which Rylie does). Then she said Rylie's levels have been at 90 for the past 4 years so its probably just normal for Rylie and thats just how she is. WTH! I didn't know that. Every year the pediatricain calls and says Rylie's bloodwork came back and everything is fine. I never ask for numbers, but I guess I should start. The pediatrician said to just start giving Rylie a multi -vitamin and we will have her bloodwork done again in three months. I'm not worried, but it's funny because I GOOGLED causes for elevated MCV levels and it came up Down syndrome. Is this something comman with Down syndrome?

Sunday, January 27, 2008

Guess who got her ears pierced ....




AGAIN!!!!! Rylie had her ears pierced when she was a baby, but she was always pulling on the earrings and when she got a little bit older she would actually take them out. It got to be so annoying that I just took the earrings out and let the holes close up. So, it's been a few years and yesterday on a whim, while at the mall I decided let's get them pierced again. She did great! She didn't even cry! She is still being good. She knows the earrings are there, but she isn't even bothering with them. I hope she continues to do good. I think she looks so pretty with them and I'd like to keep them this time.

Friday, January 25, 2008

Move over Mommy, I've been Tagged!


Hi everyone, this is Rylie. I finally get to do my own post. It's about time since the blog is called RYLIE! Well, mommy is giving me this opportunity only because baby Logan over at the Baetan Family tagged me to do a list of my loves and dislikes.So here goes....

I love Mommy, Daddy, Karlie and Cesalie
I love playing dress-up and make pretend cooking
I love all things Curious George
I love my pre school because I love to learn and see my friends
I love ice cream and bread
I love amusement rides and playgrounds
I love babysitters(anybody want to babysit me?)
I love birthday parties and presents
I love blogging, this is fun!

My dislikes are pretty simple....

I don't like being put in time out
I don't like being told No!
I don't like being told Don't Touch, Get Down, or Stop It!
and I don't like being told to wait for anything.

If you say any of these words to me I will immediately throw a tantrum!!!!!!

Hey this was fun, now I want to tag Peanut over at Three Weddings

Thursday, January 24, 2008

I Love This

I wonder who wrote this. Anybody Know?

THE CREED OF BABIES WITH DOWN SYNDROME

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

-Author Unknown

Tuesday, January 22, 2008

Rylie did great!

Wow, Rylie really suprised me. Last night we fed Rylie very well! She stayed up late and actually slept later then usual. She woke up at 8:30 and got her bath. She started right away asking for crackers but I distracted her by letting her look at family pictures on the computer. Then she watched her new montage three times in a row. Every once and a while she asked to eat, but we just changed the subject and she did fine. Surgery didn't get started until 12:00, even though they promised me no later then 11:15. There was another little girl in the waiting room, so Rylie was having fun playing with her while waiting. The actual surgery only took 10 minutes and when Rylie woke up, she was a little groggy and cried for a couple minutes, but then she started belting out The Curious George song followed by a few Barney songs. When she got home she ate some pizza and chips. She played for about an hour and is now taking a nap.

She must be hearing good already, because the doctor was giving recovery instructions, and of course mentioned about wearing ear plugs if she goes swimming. Well, before Rylie laid down for her nap, she asked me at least 20 times if she could go outside in the pool and swim? I said, sure Rylie, soon as it stops flurrying outside. By the way, we don't even have a pool!

So, anyway the surgery went very well. She will have a follow up visit in 2 weeks and a hearing test.

Monday, January 21, 2008

No food or drink for Rylie, God help me!

Rylie's ear tube surgery isn't until 11:00am tomorrow. She is not allowed to have any food or drink after midnight. She usually is asleep by eight and wakes up around 6-6:30. Every morning I go into Rylie's room to get her and she says -HI MOMMY, EAT! Oh no, how am I going to explain to her she can't have breakfast or a snack or her juice? Her receptive language skills are not too great, so it's not like I can sit her down and explain to her that she is having surgery and that's why she can't eat.How many times do you think I will hear, MOMMY, EAT tomorrow before 11:00? I'm guessing, one thousand times.I'll let you know.

Friday, January 18, 2008

Check out my new banner

Isn't my new blog banner so awesome? It was designed by Tom over at Narrow Ridge. He did such a great job! Thanks Tom!

Wednesday, January 16, 2008

How long?

When you have a child with special needs, of course it can be tough some days, but you love your child. You treat them like the rest of your family. You see your child as a child first and not their disability. You become their advocate and make sure they get the best medical care available to them. Your life goes on, but you do have certain problems that arise here and there. For some parents, their children have a lot of medical problems. For some it is problems with their child's education, and for some like myself it is behavior problems. Whenever I get upset, sad, frustrated etc about Rylie having Down syndrome, it's not her that I'm upset with or sad about or frustrated with, it's the SYSTEM so to speak. It's dealing with doctors, caseworkers, therapist,and paperwork. Anyway here is where I'm going with this..............................

Back in August(5 months ago) we contacted our IU and told them we would like to have a behavior specialist for Rylie. Three weeks later, We were contacted by an outside agency(wrap around) and told that in order for Rylie to get the services they need to evaluate Rylie and do an intake. Three weeks later I brought Rylie out to this agency and told the intake worker all about Rylie's behavioral problems. Three weeks after that they sent another worker out to my house which I wrote about here and I told the worker all about Rylie's behavioral problems. Another three weeks go by and the same case worker goes out to Rylie's preschool and the teacher tells the worker all about Rylie's behavioral problems. Then the worker puts her evaluation together so that we can meet with the psychologist three weeks later and tell him about Rylie's behavioral problems. Then the psychologist diagnoses Rylie with Disruptive Behavioral Disorder , by the way this took him three weeks to do. Then we meet up again at the agency and we go over Rylie's behavioral problems. And then three days later they tell us She is approved for a behavior specialist and a TSS(therapeutic staff support). Three weeks later the behavior specialist contacts me and comes to my house to meet Rylie. Well guess what she wanted to know-What is Rylie's behavior like? GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!
So, now she can come to my house every week and I can tell her about Rylie's behavioral problems. And maybe someday (perhaps three weeks from now)the TSS will contact me and I can tell her about Rylie's behavioral problems. Oh, and also the behavioral specialist(who I really do like, and gave her this same speech today, and is really going to help me out, and who agreed that this was ridiculous) told me Rylie really should have a Mobile therapist to help her with her behavior, but she would need to be evaluated again.

Ya know, Rylie's behavior has actually improved these past 5 months and I give Vince and myself the credit. Who else could I give it to?

Why does everything always have to take so long? Why do so many people have to get involved? Why is it so hard to get a doctors appointment when you need one? Why do you have to argue at IEP's to get what your child needs.

If you read this far , thanks for listening, I'm just having one of those days.

Tuesday, January 15, 2008

Another Ear Tube Surgery

Rylie never had an ear infection as an infant or toddler, but she would sometimes get fluid in her ears when she had a cold. In April 2006, she got tubes put in for the first time. Immediatley after getting tubes her speech exploded and she passed her hearing test with flying colors! Her last hearing test was done last January and she passed. Last month she got her first ear infection ever and then another one a week later. I was starting to wonder if she was having some trouble hearing. I noticed she wasn't making any improvements in her speech. So, last night I took her to her ENT appointment. The ENT said Rylie has fluid in her ears and needs new tubes. Surgery will be next Tuesday. It is a quick and simple procedure, but I am still nervous.

Friday, January 11, 2008

The rest of the story Part 7


Well we spent 14 days in the Nicu before they let us take Rylie home. The cardiologist said she had a opening in one of the chambers of her heart, but he thought it would close on its own, and it did. She had a few follow ups with the cardiologist and an echo then she was in the clear. She past her hearing test at the hospital, but later failed it. She eventually had ear tubes put in and that did the trick. She was also diagnosed w/ an eye problem(THIS IS SUCH A LONG STORY IT DESERVES ITS OWN POST. LETS JUST SAY A MIRACLE OCCURRED, AND SO FAR TO DATE RYLIE'S EYESIGHT HAS BEEN PERFECT). She also had sleep apnea. We had to learn infant CPR and she was brought home on a monitor.(grrr I hated that thing to no end!)


One thing that really made me sad was that Karlie was not allowed to go into the Nicu. No children under 12 years old! I begged the nurses and doctors everyday, but these were the rules and it broke my heart. On the day Rylie was discharged, we left the hospital and drove right to Karlie's preschool. Oh, the joy of finally seeing her hold her sister.


Early intervention started at home right away and there were tons of doctors appointments that first year.


If you are a family member, friend or blog friend then you already know how much we love Rylie. She has brought so much JOY into our lives. The sadness we felt in the early days of Rylie's life have disappeared. No, It is not easy raising a child with Down syndrome. We have had our struggles and especially now that she is school age there will be a lot of challenges. But we have gotten this far and I am excited to see what the future holds for Rylie.

Wednesday, January 9, 2008

Finding out for sure Part 6

I was really holding out hope that Rylie didn't have Down syndrome. Vince and me just didn't see it. I am amazed when I hear other parents say they looked at their child for the first time and just knew. I couldn't see any of the characteristics. We look back at her newborn pictures now and laugh, because we must have really been in denial.



So, it was now Thursday, three days after Rylie was born. I was leaning over Rylie's bed, talking and playing with her, when I was approached by the Nicu doctor( I have no I idea what his title was officially). He said, "Mrs. Volz, the genetic counselor is here to talk with you". No, No, No is what I cried out. Does she have Down syndrome, Is that why she wants to talk to me? He said, yes, and then started to explain something, but I ran away from him to find Vince ,who was outside in the hallway. I found him and just started crying, and saying she has it , she has it!



The genetic counselor found us out in the hallway and took us in to a private room. She had a very "cold" personality. She had papers w/ pictures of chromosomes on them ,and was trying to explain things to us. I kept asking her , what is Rylie going to be like. Will she walk, talk etc. She gave me the I don't have a crystal ball speech and went on her way. She couldn't say one positive thing to me. Where was the book Gifts back then?

I was devastated. I did not take this news well. They were still checking her eyes, ears, heart and a million other things, but now I didn't care. I felt like now Rylie has Down syndrome, and that can't be fixed, so who cares about anything else, just fix whatever you can and let me take her home and somehow deal with this. I know that sounds awful, but that was how I felt. I was in complete shock. I couldn't believe this was real but, during this time I constantly prayed and people were praying for us. And I did feel God's presence, but I felt so cheated. Many parents describe finding out a diagnosis of Down syndrome as being like the loss of the baby they thought they had, and having to go through a grieving and mourning process, and I have to agree. I knew I loved Rylie, and this is why it hurt so much. I felt bad for her. I didn't think this was fair for her.

So if it wasn't Hirshsprungs, What was it? Part 5


It was Anal Stenosis. Anal stenosis is the narrowing of the anal opening, making it very hard for the baby to pass stool. Instead of any type of surgery Vince and I had the pleasure of fixing this ourselves. We literally had to insert a metal dilator into her anal opening twice a day for months.(sorry if this is too TMI). We were told this protocol may not work and she still might require surgery in the future. Thankfully, it did work and she never needed surgery. The doctor told us that Rylie would still have to deal with constipation for the rest of her life. Well, she dealt with constipation for about 6 or 7 months and has never been constipated again. She is very regular and potty trained( except a night time).


I'll continue about the rest of the NICU stay in my next post.


Tuesday, January 8, 2008

Birth story part 4



So because Hirshsprungs disease was suspected, we met with the GI surgeon. He explained what Hirshsprungs was and told us Rylie would need surgery in two days, but before surgery they would do a biopsy to confirm. The surgeon kept saying" these kids "this and ""these kids "that referring to Down syndrome. All I could think of was, how did the baby that I carried for 9 months, who's ultrasounds were always perfect become one of "these kids".So. I signed all the consent forms for surgery.




The next day as soon as I walked in to the nursery, I was greeted by a smiling surgeon. He's said, good news mom-Rylie does not have Hirschsprungs. Praise God!!! It was a miracle! The surgeon said he couldn't believe it. According to her x-rays it looked like Hirschsprungs, but according to the biopsy it was not. So, no surgery for Rylie. As happy as I was that my little baby would not be getting surgery, I just wanted to know if she had Down syndrome. We were still waiting for the blood work.




We had a lot of support from family and friends. I didn't have a computer or Internet back then so, Alot of people were doing Down syndrome research for me. I was not to happy with what I was finding out. All I did was cry and pray, but I was loving my baby. Even though she was hooked up to a million wires I was still able to hold her all the time. I was amazed at how BEAUTIFUL she was. I just wanted to bring her home so bad. I hated the NICU. I was thankful that she was in the hands of good doctors and nurses, but I felt like they owned her and they wouldn't give her to me to take home. She still needed to be seen by the cardiologist any many more doctors. She needed a hearing test, eye test, and MRI. She was also being treated for Jaundice.

Birth Story Part 3


So on with the story-

It was believed that Rylie had Hirschprungs disease, so they wanted to transfer her to St Chris's Children's Hospital. She was taken there by ambulance. My obstetrician discharged me so we were able to get to St Chris's to be with Rylie She was already admitted and hooked up to all kinds of machines when Vince and I got there. I was about to hear everything the doctors thought might be wrong. Rylie was about to be put through all kinds of test and possibly surgery, but I only had two questions-I wanted to know if she had Down syndrome and when was I going to be able to take her home.

Monday, January 7, 2008

Birth Story Part 2

Rylie had just been born. They gave her to me, I looked at her and the first thing I said was, Oh wow, she looks just like Karlie. I wasn't even holding her for 15 seconds until they took her from me and put her on the scale to weigh her and clean her up. Vince said to me-she is so cute, she keeps sticking out her tongue. I thought ,that's cute. Then the doctor picked her up and said, she's beautiful, but I wanted to show you that some of her toes are webbed.. My heart sank. How in the world did that happen. But I figured that was something that could be fixed. Then the doctor said, she is having a little bit of trouble breathing and they were going to take her to the nursery. And that quick they took her away. Vince stayed with me for a while and then went to the nursery to check on Rylie. She was in a warmer and the nurses said she was doing fine. He told them he was going to go home for a little while and get some rest while I slept. He asked the nurses, if he should stay. He didn't want to leave if everything wasn't Ok, but the nurses kept assuring himthat Rylie was fine. So he went home. Meanwhile I could not sleep. I asked a nurse to take me to see my baby. When I arrived in the nursery, I was able to hold her. I was telling all the nurse how she looked just like Karlie. I enjoyed holding her for a while then went back to my room. I really needed to sleep, I had been up for 24 hours or more.





It was 9:00 in the morning and I was half asleep. Rylie's pediatrician walked into the room and sat down.(I recently read somewhere that when a doctor sits down that is not a good sign). Here is how our conversation went.(keep in mind I am all by myself).





Me: How is her breathing? Is it because of the epidural? Is she Ok?





Doc: Her breathing is fine. blah blah blah(can't remember now)





Me: What about her toes? Will is this effect her walking(I'm already worried about her walking)





Doc: We will have to wait and see. She could have surgery to separate them. It all depends on the bones, listen I think your daughter has Down syndrome. We are doing a blood test to make sure.





Me(jumping out of the bed, immediately pacing the floor):WHAT?????I just saw her. She looks fine.





Doc: blah, blah, blah, Muscle tone, blah, blah, blah, features, blah, blah, blah chromosomes............





Then the doctor quickly explained that it was nothing I did and then he just left.





I immediately called Vince, but he was sleeping. I kept calling and calling until he finally answered the phone. I screamed something like, they think she has Down syndrome , get here NOW!!!!





I don't think the way the pediatrician told me this news was right, especially since I was all by myself, but I sure didn't deliver the news to my husband that well, but can you blame me?





Then I called my mom, and gave her the news the same way.





I just started crying and continued crying for almost two weeks.





The next day, Rylie was transferred to the children's hospital.





To be continued................................................





Sunday, January 6, 2008

5 years ago today



Rylie was born. It was around 1:00 in the morning when my water broke. I wasn't having any labor pain yet, but was told by the doctor to get to the hospital. It was three weeks before my due date, so I was happy to be getting out of being pregnant early. Since I wasn't in pain, we weren't in a big rush. We woke up Karlie and packed a bag to go to Mom-Mom's. We told her that tomorrow she would get to meet her new baby brother or sister. Karlie was so excited about the new baby. She had a special gift for her or him,(stuff hippos, aka Hippies). So we dropped off Karlie at my moms and enjoyed our ride to the hospital. It was snowing that evening. We were so excited, talking and laughing and getting ready to meet this baby!


Since my water had broken, I needed to be induced. The doctor and nurses talked me in to getting an epidural. Since I got the epidural right away, Labor was pretty uneventful. After some pitocin, an epidural, some contractions and three pushes Rylie was born. Yay, another girl. We were thrilled!


Now today is a happy day, so if I start writing about all the hell that broke loose after Rylies arrival into the world, I might get sad, so stay tuned for part 2,3 and maybe even 4. Hopefully I will let you know the rest of the story by the end of this week.


Rylie-Daddy and me are so proud of you. You have grown into a beautiful 5 year old. What comes naturally for most children, you had to work so hard, learning to eat, walk, talk etc. You are a hard worker. You fill our lives with laughter. Nobody has ever made me laugh harder then you. Happy Birthday-Love you!!!!!

Thursday, January 3, 2008