Happy Halloween from my little bed bug! She's giving her best scary face!
10.31.2010
10.27.2010
Prayer, Prayers, and more Prayers
It seems I'm always asking ya'll for something, but here we go again. If you could please spare us a few of those very special prayers for Rylynn, it's time we get back to it.
Yesterday was Rylynn's cardiology appointment. We weren't scheduled to go back until December, but because of her recent illness and based on the echo that they took while she was in the hospital, they bumped us up a bit. Gilly and I knew deep down that this may not be a good sign, but hoped they were erring on the side of caution.
Our appointment yesterday confirmed the Doctor's concern that Ry's heart function is not what we'd like to see. I guess you could say the function is ok, but the muscle is not pumping with the rigor that it should. I asked how concerned we should be and before I could finish the sentence his answer was very. If the heart muscle is truly tiring out, this will lead to the ultimate dirty word, heart failure. There isn't much you can do when the heart doesn't want to work.
Now, before we scream transplant and board the emotional roller coaster, we are supposed to remain calm and optimistic and hope that when we meet in one month we'll have some kind of better news. Dr. Rowe wants to discuss things with the folks in Dallas and see what they think. In addition, he has added two new meds to our daily regiment and increased the dosage of what she was on. This may make a difference as well. We are praying that maybe her heart was just worn out after her virus and maybe it will improve as she gets over this cough and congestion. It's hard to believe that our crazy little tot could have anything less than a perfect heart with as much energy as she has.
Please, please be sure to keep us in your daily prayers and I will keep you all updated as we know anything.
With love. . .
Yesterday was Rylynn's cardiology appointment. We weren't scheduled to go back until December, but because of her recent illness and based on the echo that they took while she was in the hospital, they bumped us up a bit. Gilly and I knew deep down that this may not be a good sign, but hoped they were erring on the side of caution.
Our appointment yesterday confirmed the Doctor's concern that Ry's heart function is not what we'd like to see. I guess you could say the function is ok, but the muscle is not pumping with the rigor that it should. I asked how concerned we should be and before I could finish the sentence his answer was very. If the heart muscle is truly tiring out, this will lead to the ultimate dirty word, heart failure. There isn't much you can do when the heart doesn't want to work.
Now, before we scream transplant and board the emotional roller coaster, we are supposed to remain calm and optimistic and hope that when we meet in one month we'll have some kind of better news. Dr. Rowe wants to discuss things with the folks in Dallas and see what they think. In addition, he has added two new meds to our daily regiment and increased the dosage of what she was on. This may make a difference as well. We are praying that maybe her heart was just worn out after her virus and maybe it will improve as she gets over this cough and congestion. It's hard to believe that our crazy little tot could have anything less than a perfect heart with as much energy as she has.
Please, please be sure to keep us in your daily prayers and I will keep you all updated as we know anything.
With love. . .
Red Balloon Run & Relay
I'm really far behind on my blogging. Life has been very busy lately and although I often hope to sit down at the computer in the evening to post, I never do get to it. I am excited to final report on our first Red Balloon Run and Relay.
First and foremost I want to thank all of our family and friends who came to Dallas to participate and those who helped us give over $3000 to Children's Medical Center!!! It's something that Gilly and I could not have done alone and I know it will make a real difference to the Heart Center. We were able to visit with Cindy from Children's who is like family to my family! From the time I was waddling around the Children's hallways from appointment to appointment, to delivery day and through both surgeries, she has always made my family feel special and has helped us in anyway that she could. She was on Team Hearts of Fire who raised nearly $11k for the Heart Center. We were also able to see a friend of Rylynn's that we made who is just days older than she.
Gilly's sister Caity flew in from NY to walk and my sister, Tammy was stuck in an airport in Brazil, but still walked for as long as we did. (I'm sure security was beginning to get nervous watching this American woman pacing up and down her gating area!!)
The weather was beautiful and the atmosphere was great. I have a few pictures to share, but am still trying to get some from family who had cameras as well. Thanks to everyone for your support we love ya'll!
10.08.2010
A great week
Rylynn has been feeling great this week. She is back at school and although it's taking a little readjusting, she is doing good. I had intended to post last week about a special visitor that they had at Rylynn's school. Unfortunately, with all the craziness I just never got around to it. Two weeks ago a clown came to sing songs and do a lesson about animals. The director wasn't sure how all the little ones would handle her and I knew Ry may not love it. I figured I would head up there to offer an additional hand and see what Rylynn thought. By the time I arrived, Rylynn was already standing in the hallway with her teacher!! Once the clown started playing music Ry decided she liked it. So I thought we could slip back in the door and she could watch on my lap. That lasted about 3 minutes. The clown made the mistake of making eye contact with Rylynn. She shot up and instantly wanted to get the heck out of there!! It was quite funny!!
So I'm beginning to wonder how well this Halloween is going to go over... it may be a long night!
We are headed to Dallas for the race this weekend. I have no idea what to expect, but hope it will be fun for everyone. Thank you to EVERYONE who donated to the cause! We have the best family and friends!! :)
With love. . .
10.03.2010
Quick Update
We're home safe and sound and Rylynn is starting to feel much better. Today was the first day we started to see her old self which was reassuring. I'll post again soon, but I'm off to bed for now.
Thank you for all the get well prayers.
With love . . .
Thank you for all the get well prayers.
With love . . .
10.01.2010
Rough Couple of Days
I'm going to keep this short because I'm using a computer here at the hospital, but I wanted to post an update.
Ry is battling a yucky virus (little cough and congestion) that led to an earache, but she's having a tough time fighting it. We came to Dell Children's on Wednesday night after failing to curb her temp at home and a rough case of the chills. She was shaking and starting to discolor so we came right in. They decided to admit us and we're still here two nights later. They have run lots of tests and are confident that its just a virul thing, but it's just a question of how well her body can fight it and how her heart reacts. 
Ry is battling a yucky virus (little cough and congestion) that led to an earache, but she's having a tough time fighting it. We came to Dell Children's on Wednesday night after failing to curb her temp at home and a rough case of the chills. She was shaking and starting to discolor so we came right in. They decided to admit us and we're still here two nights later. They have run lots of tests and are confident that its just a virul thing, but it's just a question of how well her body can fight it and how her heart reacts.
When we arrived she was severly dehydrated and her sats were quite low. We have controlled the fever much better, she has been hydrated with IVs but her oxygen levels and heart rate still aren't great. They have ordered an echo to double check her heart function, but don't expect to find anything concerning. We just have to break this bug. We still don't know if we'll go home today, but I'll try to update now that I found this computer!!
This was after a night in the ER and finally reaching a "bed" at 3:30 in the morning.
Ry perked up for a few minutes today when a very special visitor came to see her. This is Boone.
Please pray Ry's little heart will bring her through and we will be able to take her home today.
With love...
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