Monday, December 20, 2010

Wishes do come true!

IN 5,4,3,2,1
I know, you see
Somehow the world will change for me and be so wonderful..........................
Do you know what show that's from?

iCarly on Nickelodeon!!! Rylie's favorite show! Rylie is pretty much obsessed with iCarly. She knows all of her songs and never ever misses an episode. She comes home from school each day and takes off her coat and shoes , as fast as she can so she can run to her room and turn on iCarly. Vince and I are amazed at how she watches the show and laughs at all the funny parts. It's great to see how she understands and gets it! We are also happy to see how she is watching an age appropriate show and not still watching shows like "Barney"! We love watching her dance and sing along with the show! She just loves the theme song! It never gets old for her and she belts it out as loud as she can.

When I found out a few weeks back that iCarly (Miranda Cosgrove) was on concert tour and going to be at the Keswick theatre, which is practically in walking distance to us I immediately thought how much Rylie would LOVE to go see her. I had remembered Sarah posting on her blog about a neat organization called Gifts from the Heart for Downs. They grant wishes to people with Down syndrome! Soooo I went on their website and sent an email explaining how much Rylie Loved Miranda Cosgrove and how she would love to go to her concert and possibly even meet her. Kim from Gifts from the Heart for Downs called me right away! She was so excited that I contacted her and right away she started making contacts so that Rylie's wish could come true!

Head on over Gifts From the Heart For Downs for the official announcement! We are forever grateful. Kim, I can't thank you enough for making Rylie''s wish come true.

Thursday, December 9, 2010

Tuesday, October 19, 2010

Girl Scouts and Daisies


Rylie joined Daisies. Today was her very first meeting. The meetings are after school right across from her classroom. I met her there and she was already sitting in the circle with her friends eating a snack. Two little girls from her class are in Daisies with her. These little girls looooove Rylie and make such a fuss over her. They love to help her and everyone wants to sit next to her. I was just there observing. The troop leader thought Rylie would be fine next time without me having to be there. So it's all good!

Karlie also had her first Girl Scout meeting today. She loves it and is so excited about all the activities they have lined up this year.

I'm just not thrilled about all the cookies we're going to have to sell. I'm not big into fundraisers. I guess I have to get into it though, because there seems to be a lot of them in Girl Scouts and Daisies.

I'm very impressed with the whole Girl Scout organization so far!

Friday, September 10, 2010

Happy Birthday Karlie

12 Years ago today I became a Mom! I'm so thankful for my beautiful daughter, the sweetest girl ever born. Love You Karlie! Happy Birthday!



Tuesday, August 31, 2010

Some Updated Pictures of my Girls






Bethenny Frankel




One day this summer I stood in a line of 1600 people to meet Bethenny Frankel. I was about number 50 in line so it wasn't bad. I only waited about 2 hours. My guilty pleasure is watching the Real Housewives! Ha Ha!

Herr's Factory



Wednesday, June 2, 2010

The Life of A Christian

This was one of the songs played at my Dad's funeral service. It sums up the life of a Christian. Beautiful.

Thursday, May 27, 2010

Dad


My precious Dad passed away on Monday. There are no words to describe the pain my family and I feel and there are not enough words to describe the love we had for him.
My dad had such a big presence everywhere he went. He loved people. He would talk to anyone no matter where he went. He could instantly become a friend with a complete stranger. My two brothers and I were so close to him. We know how much he loved us for he always showed it. My mom and him were a beautiful couple. They had so many wonderful years together. They had so much in common. They loved the same foods, the shore, antiques, flowers etc. My parents showed me what true love is and how to endure life's difficulties together. It is because of my dad's faith that I know the Lord today. And I know the Lord will help us through this difficult time. My dad is now in the presence of Jesus, home in heaven and we know he is at peace.

Please keep us in your prayers, my mom especially.

Sunday, May 16, 2010

Well, Wadda Ya Know!

Rylie had her orbital ultrasound on Thursday and now I'm more confused then ever. The ultrasound revealed that there is no fluid causing the swelling on her optic nerves. This is called Drusen or false papilldema. True Papilldema is what we've been dealing with all this time. In other words her optic nerves just have a swollen appearance because she was just born this way. It explains why the medicine has never worked to decrease the swelling. She was put through hell to be diagnosed with Pseudotumor and all along it was Drusen.

But it's still a little tricky and confusing. Why wasn't this ever detected by the ophthalmologist all these years? Well because Drusen becomes more visible to an ophthamologist as a child gets older. Maybe the medicine worked and that is why the ultrasound revealed no fluid. Doctor said that's possible, but not likely, because the optic nerves still appear swollen. Why when she had a spinal tap did it reveal a high opening pressure? Well that high number may just be Rylie's normal(because of Down syndrome). Not really convinced about that one. Drusen can still cause vision problems, but it's rare. Unlike Psuedotumor which is very vision threatening.

Rylie was taken off the medicine and will go back to the doctor in 3 months. I'm just going to pray we go back to normal now and nothing else develops. Her vision has been fine throughout this whole ordeal.

Listen Down syndrome Moms, If your ophthamologist ever looks into your kids eyes and sees swelling of the optic nerves, make sure the very first test ordered is an orbital ultrasound! Because the ophthalmologist said Drusen is very comman with kids who have Down syndrome.

I'm still confused about everything! The good news is I think I finally learned how to spell ophthalmologist. Ha!

ALSO, PLEASE CONTINUE TO PRAY FOR MY DAD. HE NEEDS MAJOR PRAYER. HE'S WAXING AND WANING. HE WILL PROBABLY NEED A FEEDING TUBE. WE NEED A MIRACLE. GOD CAN DO MIRACLES AND HE HEARS OUR PRAYERS!

Monday, May 10, 2010

Some Updates and a Prayer Request

Rylie had her 4th ear tube surgery today. It went very well. We were there by 7:00 am and out by 8:00 am. Wow, that's quicker then a doctors appointment! She just bounced right up and has been running around playing all day.

On Thursday we see the Neuro-ophthalmologist again. Before that appointment she will be getting an ultrasound on her eyes. She's doing really good and not showing any symptoms of the Pseudotumor, but hopefully we'll know more on Thursday.

Two weeks ago she already had an appointment scheduled with the original ophthalmologist, so I took Rylie just because I was anxious to see if the medicine worked. There was still swelling on the optic nerves, but her vision seemed fine. If on Thursday there is still swelling, they're going to have to try a new medicine or something else. Thank God she is doing so well, or I would be going out of my mind waiting for medicine to work.

Now, I have a prayer request. My dad had a pacemaker put in about three weeks ago. The recovery has been anything but smooth. There is so much going on with him. I wouldn't even know where to begin right now trying to explain it all. Some days are better then others and today was a better one. Please pray for him! He needs healing from his head to his toes. Thank you.

Monday, April 26, 2010

Michelle from Big Blueberry Eyes came up with a wonderful way to honor Carly George's life and show the George family that her Down syndrome community will never forget sweet Carly. Please go visit here to find out more info and how you can help.

You can also visit here to grab this button.



Thank you George family for sharing your sweet girl with us. We will never forget Carly and you will be in our prayers constantly.

Wednesday, April 14, 2010

Update

Rylie is under the care of a great doctor now. She still has the swelling...it could still take weeks for the medicine to work and another test will be run. She's doing good, but it's just a waiting game as long as she is not having symptoms....more later, I'm too tired to think straight.

Friday, April 9, 2010

UPDATE

I took Rylie to the Neurologist yesterday. She looked into her eyes and said that there is still pressure there, because it looked blurry. The Neurologist doesn't have the equipment to really look into the eyes like the Opthamologist does. She only used one of those lights that the pediatrician uses, so she couldn't really tell much. She recommended seeing a Neuro-opthamologist and I told her we already have an appointment scheduled with one for next week. She said great and she knows the doctor we have an appointment with. She said he is the best! So next week we'll see him. The Neurologist increased her medication dosage. Maybe by next week all the swelling will be gone. That's what I'm praying for anyway. Rylie is doing great. She is perfect on the outside, I just don't know what's going on inside. I stopped researching Pseudotumor Cerebri online because it was freaking me out. Since she is not in any pain and still isn't showing any symptoms, I'm happy with that and looking forward to seeing the Neuro-opthamologist next week.

Thursday, March 25, 2010

I called the neurologist yesterday and was able to have a good talk with another neurologist in her department. She said it was Ok that the medicine hasn't worked yet after two weeks. She said to give it at least four weeks. That made me feel a little bit better. I'm keeping her appointments with the neurologist and the ophtamologist she has now, but in the mean time I called CHOP and was able to get an appointment with an actual Neuro-Opthamologist. I'm looking for a second opinion for treatment. I looked up this Neuro-Opthamologist online and found out that he is an international EXPERT on Psuedotumor Cerebri. I'm 99% sure after we see him we will switch to him permanently. What more could you ask for then an international expert.Plus it would be nice to only have to deal with one doctor.

So we will see her current Neurologist on April 8th, The EXPERT Neuro-Opthamologist on April 14th and the current Opthamologist on April 27th.

I hate all of this waiting, but there is nothing else to do but wait and see if the medicine works.

Tuesday, March 23, 2010

There is a certain kind of pain a mother feels when they're told there is something wrong with their child or that their child is sick. It's a hurt that goes right to the heart and causes worry..extreme worry. It's not the kind of worry you have when your short on money or waiting for a call back for a job, etc. It's a worry and a hurt that goes right to the heart and causes your eyes to well up with tears every time you think. I'm afraid this is how I feel right now. We went to the opthamologist tonight and the swelling on Rylie's optic nerves hasn't gone down at all. The doctor said it looks the same as when she saw it two weeks ago. Maybe it will take a little longer for the medicine to work, or maybe they'll up her dose, or maybe we'll need a new treatment plan. The Opthamologist recommended seeing the Neurologist as soon as next week.

The thing is....Rylie is not in any pain. The problem is that she has Psuedotumor Cerebri and it can cause vision loss. Right now her vision seems to be just fine, but I don't know what effect this could eventually have on her.

All I can do is trust God and work with the doctors to get this resolved. I don't like this feeling. I feel like I'm back seven years ago and getting a Down syndrome diagnosis. I'll have to use that experience from seven years ago to remind myself everything will be fine.

Friday, March 19, 2010

Yesterday Rylie had her MRI. This morning I called the neurologist for the results because I knew she had them according to radiology. I was getting anxious waiting for her call back, so I asked radiology to fax the results over to her pediatrician because I knew her pediatrician would get right back to me. And she did. She told me everything with her brain looked normal, but they saw fluid in her sinuses and noted that it might possibly be mastioditis. HUH? The ped told me I need to take her over to the ENT. Well Rylie was already at school and my car was in the shop, so I casually told the pediatrician I would take Rylie to the ENT next week, not realizing this could be something serious. The pediatrician told me...NO, I'm not asking you to get her over to the ENT now I'm telling you, then she told me to take a taxi if I had to. She said she might need IV antibiotics. So right away I went into panic mode! The pediatricians office made arrangements for me to see the ENT at 2:00 and that gave me some time to make arrangements. My friend Kim picked up Rylie from school and my mom was able to come up and watch Cesalie. Speaking of Cesalie, while I was in panic mode and making all these phone calls she went into Karlie's room, found a black Sharpie marker and decided to draw all over herself. She drew all over herself and because she loves cats so much, she decided to become one and drew whiskers on her face. Yeah, just what I needed.

After I finally calmed down and was waiting for my mom to come up, I went on line and googled Mastoiditis...and realized there was no way Rylie had this. Her hearing has been fine and her ears looked wonderful to me, she had no fever and has been doing great. So, after I read that I really started to calm down and wonder why the pediatrician was making such a big deal.

Meanwhile I was getting ready to get out the door and the Neurologist calls and says, Rylie's MRI was normal. I told her what the pediatrician told me about the Mastoiditis and she said anytime you do an MRI they will see some fluid in the sinuses, and she wasn't worry about it, but still go see the ENT in case.

So, we go to the ENT and the ENT said that the pediatrician overreacted. Rylie was fine. She just had a little bit of fluid in her ears and her tubes were now out. She got a hearing test and did pretty good, but we need to schedule her for ear tube surgery again.

Ok now back to the MRI. Because everything else with her brain has been ruled out that officially means she has Psuedotumor. They're not 100% percent why children get Psuedotumor, but they said it's common with Down syndrome. She is taking Diamox to deal with the Psuedotumor and the swelling on her optic nerves. Hopefully the medicine is working. We will find out when we see the Opthalmologist on Tuesday.

Besides the fact that Rylie had severe pain from her spinal tap last week, she has been fine. No nausea, vomiting or any other symptoms Psuedotumor can cause.

The pediatrician had me scared today. But thank God there was no mastioditis! I realize her ped had to take all precautions, but I think she should have consulted with an ENT and the neurologist before scaring me to death.

Friday, March 12, 2010

Update

Rylie was sent to CHOP last night because she was in pain, and her pediatrician wanted them to do an MRI on her back.

While waiting in the ER her pain subsided quite a bit(ANSWERED PRAYER!!!!). The doctors checked her out and didn't feel that her pain warranted an MRI. They gave her some pain medication and sent her home. Apparently this pain in her back is normal for having had a spinal tap. It should resolve completely in a couple days.

So for now she will have an MRI for her eyes next week, and we'll go from there.

Thursday, March 11, 2010

Rylie is doing good right now. Prayers have been answered. Thanks everyone. I'll update when I know more.

update

Doctor said Rylie's back was swollen and the pain was radiating to her front. She'
s on her way to CHOP for an MRI on her back. I would appreciate prayers.

Some stuff going on with Rylie

On Tuesday Vince took Rylie to her annual eye exam. She sees the eye doctor each year for her Optic Nerve Hypoplasia and astigmatism. Right away the doctor notice that her optic nerves were swollen. That is very serious and she was sent right to the emergency room.

When we arrived at St. Chris's she had blood work which was normal and a catscan which was also normal. They wanted to send us to CHOP, but CHOP wanted St. Chris's to finish up with all of the neurological test before they sent her.

They gave her a spinal tap( that was a horrific experience for Rylie) Her levels were elevated. They then admitted her to St Chris's with an MRI ordered for the next day.

The next day we were told the MRI machine was broken. They wanted to transfer her to CHOP for an MRI, but CHOP was too backed up.

In the mean time she was seen by a neurologist.

All the doctors seem to agree that she has Pseudotumor Cerebri. They put her on medicine to treat it for the time being and discharged her. She is scheduled for an MRI next week at Abington hospital. The whole not being able to get an MRI thing was an ordeal!!! I called Abington myself to see if they did pediatric MRI's.

Today she is refusing to walk and seems to be pain. I'm worried that this might be from the spinal tap. She keeps saying her belly hurts(like it's sore or something). She seems fine otherwise. She is eating alittle and drinking and playing on the couch, she screams though when I make her get up to walk. I called the pediatrician and they said to bring her in. Vince is taking her over there right now as I write this. I'm also wondering if she might have a UTI, because she hasn't gone potty all day. Maybe that is why she is in pain???

I'll update later.

Tuesday, February 23, 2010

Crayola Factory

This past weekend we went to the Crayola Factory in Easton PA. The kids had a great time! Here are a few pics!







Monday, February 22, 2010

Thursday, February 18, 2010

Family Guy, Palin, the R word etc...............

I am offended when someone assumes my daughter can't succeed in life. I am offended when I hear someone aborted their baby because of Down syndrome. I am offended when someone thinks my daughter would be better off in Special Ed instead of a regular classroom. I am offended when someone states that it is immoral to give birth knowingly to a baby with Down syndrome. These are the things that offend me.

If someone went up to Rylie and called her a retard. I would be offended. I would probably knock that person out. LOL! And yes, I cringe when I hear the word. But, It's not a battle I choose to fight every time I hear it used on television or in the movies. I'm not going to fight to ban the word retard the way I'll fight for inclusion and educating people not to have an abortion. If given a chance I might educate someone who is truly ignorant about the word. But it's just not a passion of mine to end the word.

I'm really surprised how many people where so offended by the Family Guy episode. A girl with Down syndrome on the show said her mother was the former Governor of Alaska. That was funny and that mother of hers raised her to be an intelligent and feisty woman. I actually like Sarah Palin. She's not the official spokesperson for Down syndrome. Yes, she is one of the most well known parents of a child with Down syndrome, but she is also so new to this... still. When Rylie was first born I didn't know anything about Down syndrome. I had know clue how to advocate. Do you know how many doctors, therapist and people in general said things that hurt me back then? I didn't have any witty sarcastic remarks to throw back at them. If you don't agree with Sarah Palin's political views, that's fine, but people should not get so caught up on her every word when it comes to Down syndrome. I thought the whole Emanuel/ Limbaugh thing was odd. Yeah, she blew it, but I have to give her some lead way. When Rylie was first born I was very conflicted and I'm sure I contradicted myself more then once.

Tuesday, February 16, 2010

My Opinion on the Family Guy episode

I'm not a fan of the show at all BUT, I thought it was great! They portrayed a person with Down syndrome in a regular high school setting, getting dressed up nicely and going on a date. Then they made it clear at the end of the show that people with Down syndrome aren't all the same. What more could you ask for?



And the part about her mom being the former governor of Alaska....no big deal.

You can watch the episode here.

What did you think?

Monday, February 15, 2010

Wednesday, February 10, 2010

November 1996

We are snowed in today with nothing to do, so we're looking through our wedding and honeymoon pictures and scanning them in the computer. Aaaaah, to be young and skinny again!





Tuesday, February 9, 2010

I'm Not going to Feel Guilty Anymore.

I always felt guilty when I think about Rylie's birth story. I wish I would have known the joy she would bring. I wish the days after her birth weren't fill with grief and I wish I would have accepted that she had Down syndrome instantly, but I didn't. I cried....for a long time and I prayed that the doctors were wrong. But when I read this beautiful birth story and the hundreds of comments that were left, I realized how many mothers out there felt just like me when finding out their baby had Down syndrome. It is not wrong that I grieved the loss of the baby I was expecting. What matters is that I did accept her along with my family and friends. What matters is we love her. What matters is she brings joy to everyone who meets her. What matters is now I realize how blessed I am that Rylie is my daughter who has Down syndrome.

Wednesday, January 6, 2010

Happy 7th Birthday Rylie!


Wow, how did seven years go by so quickly? Rylie is so excited about turning seven today. She has been talking about it for days! She was even more excited to share some Munchkins with her class for a birthday treat!

Happy Birthday Rylie! I love you so much and I'm so proud of all your accomplishments. Your enthusiasm for life is contagious and you bring joy to everyone who knows you. I just love watching you grow. Your a big girl now...enjoy your 7Th year!