Tuesday, March 24, 2009

Doctors and doctors and more doctors...ugh.

This is all Vinnie's stuff, just to be clear.

We went to the eye doctor yesterday. Vinnie has a blocked tear duct that at this point would need to be probed. He will be put under for this. Otherwise his eyes look great. So we set April 1st for his surgery.

After the eye doctor was the genetics appointment. I really don't understand why we see her but I am assuming because she kind of knows what things should be looked at with children with DS. She is amazed at Vinnie, he is doing so well. Oh and amazed at his parents too! She suggests since he snores to go the an ENT to see what he says as far as sleep apnea. If you didn't know Vin has a very small penis, almost an innie. So we mentioned that and she suggested seeing an endocronologist (spelling?) to make sure it's not a hormone problem. Because of his itty bitty pee pee it's hard to pull back on the skin and he will most likely need ot be re-circumsized so we are trying to get appointments for all of these things and will most likely put a hold on the tear duct surgery so if he does need to be re-circumsized they can do it while he is under for his eye. Phew...I think that's all.

Monday, March 23, 2009

Rylie is going home

Yahoo! Not sure if she is home yet or not but the latest news on her Carepage was she had done all the things required to go home. I am sure that her and her parents have a lot still to go through, her being in a cast from belly to ankles(I think that is where it is now). Thanks for thinking about our special little friend!!

Sunday, March 22, 2009

Wow, an award!

Life is Grand

I actually won an award from Karyn at Quinn's Crusaders! Go check out Quinn, she is sooooo cute! I am hoping to meet them one day so Vinnie and Quinn can fall in love! LOL

I guess this means that people are actually reading my blog – ha ha. (I felt the same way Karyn!)

Thanks Karyn!!

The award is called the Life is Grand Award. And for this award I must give five reasons why I think life is grand and then tag five more people. My reasons life is grand are:

1. Life is grand because of my kids, Rudy and Vinnie. What amazing little men!
2. Life is grand because of Jayson, my hubby, even if he does screw up (a lot! te he) he makes it possible for me to be home with the boys and puts up with my crazy emotions.
3. Life is grand because Vinnie has Down syndrome. I know some of you are saying "is she crazy?"...nope, not one bit. Because of Vinnie and his extra chromosome I have met some amazing people, opened my eyes to many new things, and has brought me to a new level of love. What an amazing journey.
4. Life is grand because I have so many people in my life that I can lean on and can lean on me. I love that I am able to lean and be leaned on because if it was just one way or the other it wouldn't feel so rewarding.
5. Life is grand because I am alive, this may seem small to some but I have been through and have seen so much in 32 years that I am truly amazed that I am here.

I think I am suppose to tag other people but I really don't know how to do that. I would love to see anyone else's "Life Is Grand" so consider yourself "tagged" and let me know so I can read!

Rylie update good news

good news

Posted 18 hours ago

Well we have just been informed Ry is being moved out of ICU today. As I mentioned before Rylie will be finishing her recovery on the cardiac floor instead of the orthopedic floor.....just so they can keep an eye on the cardiac piece. Rylie has turned the corner and is showing huge signs of improvement which is such a relief to Jim and I. What were weren't posting before was Rylie wasn't talking. She was trying to but couldn't formulate her words. A consult was done with the neuro team and no one could really pin point what the cause was. In the end they are thinking it was a combination of all the medicine she was on. Thank you to our friends/family who helped educate Jim and I quickly on the questions to ask and what to look for. You guys are the best!
So from here I believe the last hurdle she has is to get off the o2. Everything else it out which is making her much more comfortable. She is eating and talking to us and right now watching Charlie Brown with Auntie Joanie. Her nurse Lisa and I are going to try and wash her hair and clean her up. This should be an adventure!
We will update later.

Friday, March 20, 2009

Rylie update 3/20/2009 9pm

Jim and I met with some of the various groups of people taking care of Rylie today to try and get a better understanding of what is going on. While everyone was helpful there appears to be many different theories and ideas on how to treat Rylie. Because there are other underlying issues with Rylies health we are dealing with so many different doctors. There are so many different teams of doctors who specialize in different things here at Children's it is amazing. The pain management team want to be sure she is being given everything needed to ensure she isn't in pain, which is their objective. However, the heart doctors don't want to over medicate as this can affect her breathing which affects her heart, which is their focus. Then there are the ICU doctors who are here with her during the night when she is miserable and they want to make her comfortable which at that moment is all our objectives. The end result is Ry is going to remain in ICU until this can all get resolved which we are happy with. THis way she has a nurse who just focuses in on Rylie.
Today Ry slept most of the day and Jim and I are praying that doesn't mean we are in for another rough night. If we are.....we are and there isn't much we can do about it right now. We are just really tired and would like to get a solid few hours of sleep. It is amazing how lack of sleep can affect everything especially your coping skills.
We had a nice visit today with Grammy, Auntie Joanie and Auntie Barbara. My dear friend Beth popped in for a few minutes too which was so nice. To my fellow team mates at work......THANK YOU! The care package you sent for RY was such a sweet thing to do. You guys are amazing and I miss seeing you at work.
I will update tomorrow.
Again....thanks for all the great messages.

Thursday, March 19, 2009

Rylie Update, resting peacefully.

Posted 6 minutes ago

Jim posted some pictures of Rylie's day in Boston Monday before going into the hosptial. We all had a great time!
The top part of Rylie's cast has been removed and she appears to be much more comfortable. The doctors are talking about removing the whole thing for a few days to see if that will help with her beging so aggitated. She is sleeping now and all her stats are looking great! When she wakes up we are going to try and give her something to eat as she hasn't had anything since our dinner Monday night at the Cheesecake Factory. That place is fantastic....thanks Moe Moe for recommending it!
My parents are here so Jim and I are going to grab something to eat.
We will update later today.
Again....thanks for all your kind messages.

Keep the prayers coming for Rylie

Posted 21 minutes ago

Rylie had another long night. Her o2 stats were dropping pretty significantly throught out the night. Another chest x ray was ordered and showed her lungs were wet so she was given lasix which helped release the fluid. Also, her cast was loosened around her chest. The doctors think it was too tight and not allowing her to take deep enough breaths. Dr. Millis her surgeon decribed Rylie's mood best he said she is pissed off and boy is she ever! She doesn't understand what is going on at all. They don't want to give her anything to calm her because it effects her breathing and she runs into trouble. They are managing her pain as best as they can.
She is finally asleep now so hopefully she will rest for a while. Thanks for all the kind words and messages.
We will update later today.

Wednesday, March 18, 2009

Rylie Update


Posted 22 minutes ago

Well we are happy to report that Rylie has had a much better day. Her fever is coming down and her heart rate is normal. She is still on o2 but it has been lowered to 1.5 liters. An x ray was done again this morning and it indicated that part of her lung collapsed so part of her cast was cut off to provide relief to her chest area and allow some PT to be done. The cast went from her breast area right down to her feet. There was a small whole in her cast around her belly so that was just enlarged. Ry was also given a blood transfusion and it seemed to provide some relief. With her cardiac history the doctors didn't want her heart working so hard and by having the tranfusion this helped.
The staff here has and continues to be amazing. My parents and sister Tricia came down to visit today which was nice because it allowed Jim and I to get some rest. None of us slept last night and we were all feeling pretty exhausted.
The plan is for Rylie to remain in ICU and see how the night goes. She has been sleeping for the past few hours and doesn't seem nearly as agitated as last night. I always knew Ry was fiesty but she gave a whole new meaning to that word last night!
Thanks for checking in.

Prayers for Riley

Our dear sweet friend Riley had surgery yesterday to correct a hip problem. Riley is 4 years old and just happens to have that little something extra like our Vinnie. Her parents, Jim and Mary have quickly become our friends and shoulders (even if they don't realize it) in this journey we began when Vin was born. Riley came out of surgery yesterday and overnight spiked a temp over 104. She will or may have already had a blood transfusion today. This is all the information I have so far but I will try to update as I get updates from mom and dad. So please keep Riley in your prayers and her parents too.