Wow! What an amazing few days we've had. Something about this time of year is magical and so special. We have once again spent a Christmas like no other. This year has been spent in, instead of out shopping much. We have no lights on the house, but we do have our manger, three stockings and a tree. We still aren't in our home, but the ranch house has been super cozy and Ry has been right at home. But as we are reminded time and time again, there are only a few precious things that really matter. Being here with Rylynn is the one Christmas blessing that trumps all things.
I could ramble on because I feel like I'm such an emotional mess right now, but I'll spare you all. Our family has so much to celebrate during this special season. We will continue to do so and never forget the Grace of our Savior. Gotta go! I have a CRAZY two year to chase around!
Merry Christmas to you all. I hope you and your family have a wonderful day. Hugs and kisses!!
12.25.2011
12.16.2011
Today might be the day...
So I apologize for it being so long since I've last posted. I have so many pictures I'm still trying to get on the last one, but I'm having a little difficulty.
But pictures or no pictures, I had to get on and share some hopeful news to all our friends and family. Ry has been doing wonderful here at the holiday house. She is silly, talkative, has a great appetite, and is such a joy. She is growing and developing so quickly. It really is amazing how much they open up once they leave those hospital walls. I hate thinking about how much she would have been set back if we had been there for a whole year. But wow, you can't tell it now. And her energy level is great!
On Friday, the 9th, I took Ry to a quiet mall north of town for the last of our Christmas shopping. (I did almost everything online this year to avoid having to get out. And tried to finish everything else up before most shoppers were getting out to the stores.) Our last stop in the mall that morning was at Dillards and we had just finished up. Ry had done great all morning, wearing her mask and staying in the stroller, but now she had had enough. So we strolled to the purses where it was empty of shoppers and I let her out of her stroller for a bit so she could stretch her legs. The displays were just close enough so that I did not have to hold her hands and she could scoot from one to another without letting go. HOWEVER, before long she had let go of the displays and was walking through them like crazy! She would shout "Mama I love this one, I'm so jealous!"
It was hilarious (Don't know where she learned I'm so jealous? I don't think she has a clue what it means!) I was so excited! I let her carry on for a bit just because I couldn't believe she was walking all on her own. I'm sure the employee did not appreciate me letting my child run through the department, but I was so thrilled I just let her go! I tried not to make a big deal about it in front of Ry, but I had to call Gilly and tell him. And from that moment on, she's been walking on her own! That day alone she walked for hours, what a joy to see her cruising again! I love it!
So all been well here and at Ry's check ups. We've adjusted some meds slightly based on labs every couple of days, but no major concerns. Yesterday was Rylynn's 10 week heart cath. Her pressures were impoved (YAY!) and things all look like they are continuing to trend in the right direction. Her chest Xray is still nice and clear, echo was great as was EKG. So the docs are quite pleased. Today we'll get her biopsy results and then ....
If the results are negative...
We get to go home for Christmas! Home. As in Lampasas. The place that Rylynn and I have not been in 54 weeks. I can't even explain how excited I am. Tonight might be the first time in over a year that Ry sees her swing! It's all she's talked about for the past three days. Gilly sent her a picture of it hanging and waitiing and she just can't wait.
We are still having to clean, paint and re-carpet our home after the renters moved out so we can't actually begin moving in till next week, but till then we are going to stay at Gilly's parents ranch house (where he's been staying for the past year). We can celebrate Christmas there. Together. And next week we'll start getting settled in our place.
We are praying with all our might that Ry's results come back favorable. If so we'll be on the road as soon as we get the call. We're hoping to make it home in time for a late dinner of Gilly's hamburgers and french fries. Mmmm... I hope we're home for dinner :)
But pictures or no pictures, I had to get on and share some hopeful news to all our friends and family. Ry has been doing wonderful here at the holiday house. She is silly, talkative, has a great appetite, and is such a joy. She is growing and developing so quickly. It really is amazing how much they open up once they leave those hospital walls. I hate thinking about how much she would have been set back if we had been there for a whole year. But wow, you can't tell it now. And her energy level is great!
On Friday, the 9th, I took Ry to a quiet mall north of town for the last of our Christmas shopping. (I did almost everything online this year to avoid having to get out. And tried to finish everything else up before most shoppers were getting out to the stores.) Our last stop in the mall that morning was at Dillards and we had just finished up. Ry had done great all morning, wearing her mask and staying in the stroller, but now she had had enough. So we strolled to the purses where it was empty of shoppers and I let her out of her stroller for a bit so she could stretch her legs. The displays were just close enough so that I did not have to hold her hands and she could scoot from one to another without letting go. HOWEVER, before long she had let go of the displays and was walking through them like crazy! She would shout "Mama I love this one, I'm so jealous!"
It was hilarious (Don't know where she learned I'm so jealous? I don't think she has a clue what it means!) I was so excited! I let her carry on for a bit just because I couldn't believe she was walking all on her own. I'm sure the employee did not appreciate me letting my child run through the department, but I was so thrilled I just let her go! I tried not to make a big deal about it in front of Ry, but I had to call Gilly and tell him. And from that moment on, she's been walking on her own! That day alone she walked for hours, what a joy to see her cruising again! I love it!
So all been well here and at Ry's check ups. We've adjusted some meds slightly based on labs every couple of days, but no major concerns. Yesterday was Rylynn's 10 week heart cath. Her pressures were impoved (YAY!) and things all look like they are continuing to trend in the right direction. Her chest Xray is still nice and clear, echo was great as was EKG. So the docs are quite pleased. Today we'll get her biopsy results and then ....
If the results are negative...
We get to go home for Christmas! Home. As in Lampasas. The place that Rylynn and I have not been in 54 weeks. I can't even explain how excited I am. Tonight might be the first time in over a year that Ry sees her swing! It's all she's talked about for the past three days. Gilly sent her a picture of it hanging and waitiing and she just can't wait.
We are still having to clean, paint and re-carpet our home after the renters moved out so we can't actually begin moving in till next week, but till then we are going to stay at Gilly's parents ranch house (where he's been staying for the past year). We can celebrate Christmas there. Together. And next week we'll start getting settled in our place.
We are praying with all our might that Ry's results come back favorable. If so we'll be on the road as soon as we get the call. We're hoping to make it home in time for a late dinner of Gilly's hamburgers and french fries. Mmmm... I hope we're home for dinner :)
12.12.2011
A super special weekend and all things Christmas
A couple of weeks ago we were approached about tickets to the Children's Holiday Parade. We had heard quite a bit about it and really thought Ry would love it. However, it would be impossible to take her with crowds of people, especially children all around. The hospital helped us to get a hotel room at the Adolphus Hotel which lies at the beginning of the parade route. So Friday I packed up all of Ry's meds and everything else and once Gilly made his way into town we headed downtown. Things were already completely nuts on the streets and in the hotel lobby. Kids were running crazy, parents were chasing behind them, but joy and excitement was in the air (well, the joy and excitement was beaming from the kids, parents were a little more tired and irritable)
We made our way to our room Friday night and then camped out there only leaving for an early, quiet supper at the grill downstairs before the masses came to eat. Ry enjoyed watching the excitement from our window as they prepared for the parade. Then bright and early Saturday morning we were ready for the parade.
I figured Ry would watch a few minutes of it and then be done. But from start to finish (about an hour), she never left her spot at the window. She loved every minute of it!! She talked about it for days! It was so nice for her to experience the fun in our safe, quiet space. We have alreay booked a room for next year and hope to make it an annual trip. We had a wonderful time!
Enjoy all the pics and see what else we've been busy doing.
Pics still coming... I've been having a little tech difficulty. Check back soon!
We made our way to our room Friday night and then camped out there only leaving for an early, quiet supper at the grill downstairs before the masses came to eat. Ry enjoyed watching the excitement from our window as they prepared for the parade. Then bright and early Saturday morning we were ready for the parade.
I figured Ry would watch a few minutes of it and then be done. But from start to finish (about an hour), she never left her spot at the window. She loved every minute of it!! She talked about it for days! It was so nice for her to experience the fun in our safe, quiet space. We have alreay booked a room for next year and hope to make it an annual trip. We had a wonderful time!
Enjoy all the pics and see what else we've been busy doing.
Pics still coming... I've been having a little tech difficulty. Check back soon!
12.04.2011
Seven Year Itch
Today Gilly and I celebrated our seventh anniversary. And wow! Year 7 is one for the record books! We have always tried to get away for a night and a nice dinner each year to celebrate, but last year we spent our anniversary on our way back from a week long stay in Dallas. Last year at this time we had just gotten home, unpacked the car and began to prepare for our transplant journey. We had spent the week going through the evaluation and had taken all the necessary steps to have her listed. The final step was moving to Waco so that we could be within two hours of the hospital. So days later our entire house was packed up and Ry and I relocated. So it's been just shy of a year since Ry and I have resided in the same home as Gilly. It hasn't been easy. (Well, none of this has.) I don't know if it's harder for Gilly to leave us when Ry isn't doing well, or when she is. Either way we miss him. It's incredible to think in about a month we may be able to move back home and physically live together as a family again. And with a healthy Rylynn. One year ago, this seemed only a faint hope. A few months ago, this seemed hopeless.
Gilly has worked so hard over the past year and sacrificed his time with us. I know he loves Ry more than anything in the world and it will be so nice for him to see her again each day. Every Sunday evening it gets harder and harder to say good-bye, but I pray it's only for a few more Sundays.
Gilly is a great father and a great husband. Nothing about these past seven years has been ordinary, but for better or worse... I love you Gilly! We can't wait to come home!!
Gilly has worked so hard over the past year and sacrificed his time with us. I know he loves Ry more than anything in the world and it will be so nice for him to see her again each day. Every Sunday evening it gets harder and harder to say good-bye, but I pray it's only for a few more Sundays.
Gilly is a great father and a great husband. Nothing about these past seven years has been ordinary, but for better or worse... I love you Gilly! We can't wait to come home!!
12.02.2011
Good Report
Ry did great yesterday, I was proud of her like always. Although she was completely aware of what was happening, she tried very hard to be brave. She was not thrilled headed back to the cath lab despite the silly juice they had given her.
She was great during the four hours we spent in recovery getting her echo, EKG and transfusion. All those reports came back good and her Cath was also slightly improved. Her wedge pressures are still quite high, but they did not go up so we'll just hope that over time they will continue to improve. Her biopsy result came back today and the result was a 1R. This is a good grade. We are hoping this means that next week can cut back on her steroid a bit.
For now I have run because Daddy is here and we are "partying". Tomorrow morning we're looking forward to seeing the Children's parade here in Dallas. We can't wait. I'll post all about it real soon!
She was great during the four hours we spent in recovery getting her echo, EKG and transfusion. All those reports came back good and her Cath was also slightly improved. Her wedge pressures are still quite high, but they did not go up so we'll just hope that over time they will continue to improve. Her biopsy result came back today and the result was a 1R. This is a good grade. We are hoping this means that next week can cut back on her steroid a bit.
For now I have run because Daddy is here and we are "partying". Tomorrow morning we're looking forward to seeing the Children's parade here in Dallas. We can't wait. I'll post all about it real soon!
12.01.2011
A Busy Day Ahead
Today Ry has a scheduled biopsy/Heart Cath, EKG, echo, chest Xray, Infusion and labs. Please pray for favorable results on all of them. It will be a long day for Ry, but I'm sure she'll take it all just fine. Thanks for the extra support, I never feel alone in my prayers.
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