A much needed update

I'm finally back!  Thanks to all of you who have checked in on us because of my absence here in the blogging world.  Rest assure, we're doing well.
We made our transition up to the 8th floor on Tuesday of last week.  We did it with little drama (thank goodness).  With the help of the childlife folks, we were able to prepare her for the move and then create a positive transition.  The only real change has been in Rylynn's attitude.  She's always been such a sweet little girl.  She may talk a lot, but she's usually rather cautious and quiet.  We've been really lucky that we never had any real terrible two-like behavior.  Until Tuesday of last week...
Ry now yells at anyone who enters the door.  She puts her hand in the air and begins to yell "No".  She will continue with the hand and the yelling until said person leaves her room.  I've seen kicking, pushing, and even a little high pitched shrieking.  :(
I know this is to be expected.  I am constantly reminded from the pros here that this is normal.  She has no control over her body, her room, her personal space, or anything else in her life right now.  So this is her only way of telling us that she's fed up with it.  I am relying on the guidance of the folks here to help us through the acceptable behavior and the behavior that I can discipline for. 
So the other weird thing is the idea of raising a child with everyone watching.  You know how sometimes you are in a restaurant or grocery store and your child is misbehaving, you have to think a bit and decide what is the appropriate move while folks are watching.  That's what I have to worry about every 10 minutes as another person pokes their head in the room and tries to make small talk with Ry about her puppy or her pretty pink fingernails as she is yelling "No".  Oh well.  I will do the best I can while we're here and hope that once we return  home, things can return to normal.
I lost my focus for a bit... So back to how Ry is doing. 
Things are pretty good.  We have not had to change her meds around much because we've seem to find a pretty good balance for now.  I am reminded that this can change suddenly and then take weeks to regain, but for now we'll celebrate our happy place!  We've still got a little work to do on her anti-coagulation.  We started her on aspirin last week and Saturday when we went to undress her site, there was a substantial amount of bleeding.  I've never seen her sites bleed like that and Gilly and I were super worried.  We immediately discontinued the aspirin and are going to wait before slowly trying to get her on it again.  The sites seems to be trying to heal and we've had no major bleeding since then.  I am hoping the clot from the heavy bleeding does not cause us any grief or infection down the road.
One of our daily challenges is still trying to get her to eat more.  Right now, in a typical day, she'll eat a few bites of egg, one bite of toast and one grape for breakfast.  At lunch time I'm lucky if I can get her to eat a couple of goldfish or a bite of banana.  For supper she might eat a half a chicken nugget and a few bites of macaroni.  But man are we trying, I hope it will get a little better each week.
She's been just as stubborn each day during her PT/OT sessions, not much has changed.  She cries during most of them only because she's making a point, not because she can't do what they are asking of her.  But luckily she has finally learned to love going for walks out in the stroller to see the trains or blow bubbles in the butterfly atrium.  She still has major anxiety about the playroom, painting studio, and any other new adventures, but I see a HUGE improvement from where we were just a couple of weeks ago. 
For the most part, we spend all of our free time sitting at our new Dora folding table and chairs playing with our moon sand here in our room.  This is her favorite past times right now.  We shovel sand with our spoons morning, noon and night!  Our room is decked out with a doll house, tubs of art supplies, books, movies and anything else a toddler could want.  The hospital has given us so many things and so have many of our friends and family.  Ry has so much to keep her busy.
The final little bit I want to share for tonight is Ry's new found love for the ice machine in the nourishment room across the hall.  Even in ICU Rylynn loved to eat ice, but having full on access to this ice means she needs every drink to be filled with ice, not just ice cold.  If there is not enough ice, it must be refilled.  And even though she gives her bed side nurse grief ALL day long with the kicking, yelling, etc., she has learned that she can ask them for ice and a spoon and they will bring it.  Each nurse will ask as they leave the room "Is there anything else I can get you?"  They probably do this mostly out of habit and they are usually addressing me or Gilly, not really Ry.  But each and every time Ry hears someone ask this question (even when you think she's not listening), she will pipe up with "ice and spoon".  And lo and behold her kind nurse will come right back with a cup of ice and a spoon.  Last night she was falling asleep with her eyes already closed and all snuggled in.  And without even opening her eyes she answered the nurse with her request.  What a little stinker, but hey if it makes her feel better and gives her a little input on her care than keep those cups of ice coming!
I am exhausted and have to get some sleep.  Once again sorry for the delay in posting, I'm so glad to be up and running now and promise to keep you all better informed.  Please continue to pray for Ry.  Living in a hospital is no place for a two year old, but we're trying our best to make it work.  We pray for her Angel heart every night and every day.  We love you all.
Good night.

Testing, testing

Trying to work through some computer issues...

Still here... and doing well!

I've had computer problems all week, but Gilly has taken care of me with a new (and much needed) laptop. Thanks, you are the best! :)
So now that I'm able to reconnect with the world wide web, I can update you guys. We've had a great week and although I don't have any time to post right this second, I promise to try to post tonight.
Fill you all in soon!

Monday Update

Things have been really great here the last few days. We are still tweaking a few diuretics, adjusting her tube feeds to maximize her nutrition, addressing the cannula sites and trying to help with a strange uncomfortable feeling Ry gets every now and then. But she has been doing really well. We are told that we may get to head upstairs one day this week, maybe even tomorrow. I have real mixed feelings about going up. For one, I LOVE our nurses down here. The entire staff has been great to us and I’ve gotten to know so many people so it will be weird to head upstairs where we’ll be starting over. I have no doubt that the ladies up there will be just as great (they always have been), but we’ve never gotten to know them as we have our ICU team. Mostly because once you’re upstairs, you don’t need as much attention. The nurses are there to make sure things are fine, but the floor is setup to encourage you to care for your child’s needs as much as possible. Often this is seen as a teaching period before you take a post-op or treated heart-child home with you. (Our stay this time will be different since we are just being cared for without the intention of sending us home.) They have already assembled a team of nurses that will care for Rylynn based on their experience and knowledge of the VAD. So I know we will be in great hands and we just consider ourselves lucky to meet a new set of friendly and kind nurses.

The other part of the move that I’m so super nervous about is Rylynn’s reaction. As some of you may recall several months back… Ry was super stable here after about a week in ICU and sent upstairs on a Sunday afternoon. After a several terrible hours with her in our new room upstairs, we had to head back down to ICU because her sats were so low and her vitals were off the charts. So at 10:30pm they brought us back down to ICU and by 11:30 she was sleeping comfortably and everything was back to normal. These moves are called therapeutic moves. Right now Rylynn does not respond well to any time spent outside of her room. Today, as we have done over the next several days, we went up to the eighth floor for a ride in the stroller and talked about and looked at all the familiar things. We are hoping this will help her coping with the shift. I’m still dreading it for that particular reason.

NOW the great part about moving upstairs, which I think I have stated before, but merits repeating, is a private bathroom and the ability to eat and drink in your room!! Enough. Said.

We were so happy to have Daddy stay ALL day today, but will be sad to see him leave this evening. We can’t wait till he comes again on Friday.

So I’ll sign off for now, but hope to have more good news the next time I post.

Getting better

Ry has had a pretty great week following a pretty crummy weekend. The cath last week really knocked her back a bit. She suffered through some pretty terrible pain on Friday and Saturday (mainly from a "real" chest tube) and by the time Sunday rolled around she was super glum. We knew she was finally feeling better with some increased pain meds, but she just wouldn't snap out of the blues. It broke our heart to see her so upset. But Monday was a new day. We have had a pretty great week and each day seems a little better. She has kept most of the fluid from reaccumulating in her chest, her appetite has increased just a smidge, and she wants to get out of bed more. These are all big strides.

Also, very importantly, she's been sleeping better. She still wakes a time or two during the night and will be uncomfortable for about an hour, but she eventually falls back into a heavy sleep. I'm so thankful that she's resting better. Thanks for all those prayers for good sleep. It's so important for a healing body.

The one thing that we still have some major concerns about are the cannula (I just realized that I think I've been spelling this wrong all along!) sites. Her tissue has eroded quite abit around each site and we're trying everything to promote tissue growth. On Tuesday, the discussion began about better securing the device so that we can cut down on the movement of the cannulas. With input from the transplant team, nurses, and would care, we came up with a list of problems and then how we might fix them. I immediately called mom who I knew was on her way, and asked her to make a stop at Hobby Lobby. I was determined to fabricate a device/holster like type thing to alleviate some of the movement. Nurses brought me 100' of tube gauze elastic net (in two different sizes), 6' of some other kind of gauze wrap, gel pads, and scapels. Mom brought foam blocks, more fabric glue and some material. I spent a few hours on it late that night and came up with a pretty good prototype for my first try. I plan to use a different material, but otherwise think it's alright. I will have to post pictures of it later. I hope it helps promote healing for her wound sites.

Today, much like yesterday and the day before, we plan to leave the room for a bit. it's still disheartening that Ry doesn't enjoy getting out of the room, but we'll just keep trying.

Here are some pictures from this past weekend and on Monday when she was feeling well enough to ask for her colors. We got to work decorating Daddy's "coat". (We had to run some cultures on Ry and therefore had to gown up till the results came back negative. We tell Ry we wear these coats because we get too cold.)

This pictures was taken OUTSIDE! Yep, you heard me right. For the first time in 4 weeks, we walked outside the hospital doors for about 10 minutes. It was sooo hot, but it was still great to let Ry have a little fresh air. We blew a few bubbles and then headed back in.

Ry's about to get up from her nap and it will be time for PT/OT. I have to run and again apologize to our faithful followers that it took me so long to post. I will try to find a little more time to sit down and let ya'll know how we're doing. Keep praying for Ry's strength, appetite, cannula healing and of course, that special Angel heart.

Holding Steady and Feeling Better

We're still here and doing fine... sorry it's been a while since I've posted. Things have been busy here. I really hope to post later today. Stay tuned.

Please two night in a row!!

I am so ecstatic to report that Ry slept for 10 hours last night! Yes, ten hours, this is not a typo. She was given a new sleep aid/ anti-psychotic drug. This sounds scary, but loss of sleep is taken very seriously around here (especially when it's been a week and a half with no sleep). No sleep can lead to some pretty serious problems. I'm just so thankful we've found something that works and I hope it will get her through this rough patch until she can adjust. Actually, I hope I'm not getting ahead of myself, just because it worked last night may not mean it will work tonight, but I'm hopeful.
Unfortunately, Ry battle more discomfort today, but it was much better than on Friday. Her chest tube was removed this morning and her chest Xray still seemed clear. We'll get another Xray bright and early and are hoping for no fluid build up.
Although Rylynn wasn't thrilled to get out of the room today, we did take her for a stroller ride to see the trains, butterflies, and fish. Sometimes she's reluctant to go, but we know it's important to push her a little.
I am still extremely worried about the canula sites. We have swabbed for infection and there is none present, but both sites are very irritated to say the least. Today was the first day that Ry felt the pain of the dressing change, through her morphin. It broke my heart. I hope they continue to heal, as I know that has to be a constant cause of discomfort for her.
Tomorrow we're hoping for a little play time and more activity out of her bed. Today she sat with Daddy in the chair which was great! It's the first time Gilly has been able to hold her in weeks. We're so glad he's going to be here with us all day tomorrow too.
Tonight please pray for healing of Ry's canula sites, another great night sleep and that special Angel heart.
Good night to all!

Cath Update

Ry is out of the cath lab and I got a quick peek as she was wheeled back. She did very well during the procedure.
1. They did drain fluid from her chest. They got a substantial amount taken off and her lungs immediately they saw her lungs respond. She will still have a chest tube in so that they can continue to monitor and remove any excessive fluid over the next few days. This will be very painful for Ry while she has it and keep her from getting out of bed much. This is a huge setback for us, but I understand the importance of keeping it in there to make sure she doesn't reaccumulate anything.
2. The placed a stint in her LPA (Left Pulmonary Artery). It was about half the size of the RPA. This will help with the flow of the blood to the lungs.
3. They put a total of 10 coils in. These essentially rid her of some collateral artieries that her body developed to compensate for her atypical plumbing. As mentioned before, in Ry's previous open heart surgeries, things were rerouted and replumbed in order that she survive with only half of a heart.

It is now several hours later that I am finishing this post. I am in her room with her now. She is awake and aware and in a bit of pain, but we're doing our best to control it. She scared us a little with a desatting episode and now is keeping a very high heart rate. Doctors are keeping an eye on all of this. I praying for a comfortable night for her.
Thanks for all your prayers! We appreciate each of them!

Wednesday was a better day

I was hoping to post a nice long entry last night about what a good day Ry had. It was nice to see her finally feeling better. When she woke up you could see it in her eyes. :)

So our sweet nurse decided that we'd have a day full of activities to make sure Ry didn't stay in bed and sleep on day and in turn we were also hoping for a good night's sleep to follow.

Insert side note: We've taken a new and strong approach to make things in Ry's daily life more low key. Her room is now decked out with signs asking staff to only come into her room 3 at a time and for us to conduct as many of our medical conversations as possible in the corridor rather than at her bedside. Many times during the day there are 12 people in her room at once. I know that Ry is loved and doted on, but sometimes she doesn't truly appreciate all the attention. So from now on our excursions, therapies, and daily routines will be done with as few staff as possible.

Back to our day...

We took Rylynn to the playroom on the 8th floor for a little coloring time. She started crying the minute we got there, but we explained that she didn't have to do anything she didn't want to and it ended up that just her and I colored for a half hour while everyone else just kept their distance.

After dressing change, a feed, a sonogram, a chest Xray, a vibration session, and a really quick nap, we took Ry down to the gym for a PT/OT session. She did pretty well, but still apprehensive about it all. We also got to see the trains while downstairs. Ry was ready to get back so we headed back up.

We spent the rest of the evening coloring, watching movies, and visiting with Aunt Jess and PaPa (my mom's been here this week helping out with the sleepless nights).

We wrapped the evening up by watching Children's MED Dallas. Ry was her cute little self and it broke my heart to see how well she was just a couple of months ago. They only briefly introduced her and plan to feature her story more next week so stay tuned.

Our plan to really tire Rylynn out worked quite well. She slept (with only a few interruptions) until 3am!!! This was so awesome! I woke up at 3 ready to go! Unfortunately, at 3 they did a chest Xray and vibration session. It was 4:30 until they left her alone and by then she never went back to sleep real well. So it wasn't ideal to not be able to go back to sleep but those 4.5 hours were wonderful.

I hope this cath today doesn't create any setbacks just as it felt like we were beginning to make headway. My real hope is that it will allow her to breathe easier and feel even better.

Keep praying there is a donor heart out there for Ry. It's the only thing that will truly answer our prayers of a happy, healthy Rylynn.

In Cath Lab

Ry was taken back to the cath lab this morning. They are exploring her anatomy and measuring the pressures in her heart and lungs. Drs are hoping we can relieve a little of the pressure although she has responded well to adjustments in medications and adjustments to the VAD.
In addition, they are going to address the fluid she's got on her lungs. She just can't shake it. Her chest Xray at 4am looked slightly improved from the one 8 hours prior, but it is still pretty awful. She may come from the cath lab with a chest tube to continue to drain. This will cause more pain for Ry and keep her pretty immobile. While that is frustrating, I know that she'll feel better and breathe easier if her chest was clear. We trust the Drs decision and will just have to see what they decide.
I will update later today to let you all know how she's doing. Keep Ry in your prayers. These procedures, while not uncommon, are always risky.

Gotta get some ZZZs

Ry didn't sleep again last night so I'm too tired to post much. But I wanted to let you all know that Rylynn's cath has been rescheduled for Thursday at 9am. We got bumped just minutes before we were headed to the lab due to an emergency case.
One other note...
Don't forget to tune in the Children's MED Dallas tomorrow night. Ry is in this episode. I will try to post the utube links to both last weeks and this weeks shows for all our out-of-towners.
Love to all. Good night.

Today's Bullets

Ry just got vallum so I've got to be quick so I can catch some sleep before she's up again. I have to bullet this post.
~Tomorrow Ry is scheduled for a heart cath to explore her Glenn pressures and the back-up pressures that she's experiencing. Most likely little can be done, but if something can they will.
~Ry is NOT sleeping at night. She sleeps for anywhere from 2-15 minutes before asking to be scooched, fanned, for water, to rub her chest or to hold my hand. Just for the record I have to note the drugs she received last night to help her sleep. The docs said it could have put an adult out for days.
9:00 Ambien
12:30 Adavan
2:00 Morphin
4:00 Benadryl
5:00 Adavan (double dose)
~Today we met with the Pain Management team to discuss Ry's comfort while awake and sleeping. We have a new game plan in place for her. I hope it works.
~Fluid is worse today, but we're pushing pushing her kidneys to unload. I hope we see results soon.

That's all I've got time for now. I'm exhausted and am hoping for atleast a few hours of sleep. Please pray that Ry's cath goes well tomorrow. I hope they find something to tweek to lessen her pressures (We're pretty sure she's got some significant headaches. It's supposed to be like standing on your head all day.)
Good night to all.

The GOOD, The BAD, The UGLY

Sorry it's taken me a few days to put this post together. I haven't had the heart to get some of this down in writing. I apologize to all our faithful followers.

THE GOOD
~Having Gilly come in on Friday afternoon and spend the weekend with us. Ry loves her daddy so much and she really brightens up when she sees him.
~Hearing Ry be her chatty self, if even for only a few minutes a day.
~Ry wanting to hold my hand when she's scared.
~All of the friends and family we've connected with and have supporting us through this. It is overwhelming how much love has been poured out to us.
~Reading our blog comments, emails, FB messages and letter from those who love us and many whom we've never met. Thank you. Each one is special and will be shared with Rylynn one day.

THE BAD
~Ry is still battling fluid build up on her lungs. This mornings Xray was worse than Saturdays. They will run another tomorrow to see if we were able to diarese any of the fluid off. She's already on fluid restrictions and a whole set of diaretics so we've mazimized pulling them off in that manner.
~Still no sleep at night! Even with a sleep aid and a little morphin... only a few hours of sleep is all she had of restful sleep. The team is addressing this more aggressively now because her body needs the rest. (And I wouldn't mind a little rest myself.) It was great having Gilly here this weekend so we could take turns sleeping. I hope the Ambien they gave her tonight works or else it's going to be another rough night.
~Ry has not had an appetite in days. Tonight we are having to begin night feeds again. Good nutrition is so important for her right now and this seems to be the only way to get it.
~The canula sites are still pretty inflamed. Although yesterday seemed better, I think today's was worse. (Could be a lack of nutrition.) So I'm hoping that it will start to clear up in a couple of days. The anitibiotic that they gave to ensure that an infection does not set in is tearing Ry's tummy apart. We've had some really bad diapers one that included a dressing change because her's got soiled.

THE UGLY
I have avoided posting since Friday because I just didn't have the heart to do it. We waited anxiously for the PRA results. They aren't good. Actually, they are quite bad. I don't want to get into the protiens and the antibodies and how they work or what they mean, but this is what it boils down to. Before the blood transfusions and the VAD, etc. Ry's PRAs were 24 and 58 at two different stages. Now, after her transfusions her numbers came back at 89. (100 is the highest number) This means that we went from being able to accept 45-50% of all donor hearts to now only 10% or less. This was a major kick in the gut.
This does not is any way affect her current health condition. This only affects her odds of ever receiving a transplant. Or of receiving a good match. The team has sent off for some second opions and for more indepth look at the break down of her antibodies. We are praying for some brighter information.
There have been two other kids in Ry's exact situation on this campus that waited for a year and waited for nine months who did not receive a match in time. I wish there were some examples of those kids who walked this road and turned out great, but currently there is none. Ry has always taken us down her own path, I pray she leads us on her own unpaved path to a happy ending.
I was so thankful to see Gilly on Friday evening. He gave me a hug and told me that it only takes one heart and that we are still waiting and hopeful. I needed a kick in the pants after a long week to tell me to keep my chin up for Ry. (Its pretty bad when the docs come to deliver the news and then send the chaplain and psychologist by for a visit.) We went from smiles and hopeful feelings of a transplant around the corner, to condolences and hugs from the team... I don't really know how to take all of that??
After getting the second opinion they asked for, we will meet again this week to see where we stand and what are options are.

Once again, we're not giving up. God has led us to this place and we pray he takes our hand and continues to walk with us.
Please say an extra prayer that Ry feels better soon. It is breaking my heart to see her uncomfortable. And once again thanks for all the prayers and love so far. We love you all!

Rough Day in ICU 3206

The past two days have been really rough for Rylynn. She has not felt well at all, with a come and go fever and no appetite or energy. She just isn't happy. She has cried a lot and it breaks my heart, I wish she could communicate better what is bothering her. She slept terrible again last night, so tonight we are suspending her feed to see if that will make her more comfortable and rest better. I'm crossing my fingers that it will.
As we speak she is receiving a blood transfusion :( Her levels have been borderline low, but her body was making new blood. However with all of the blood drawn for cultures because of the fever she was creeping even lower. Her blood pressure has been creeping higher as well and tonight her sats dropped significantly. Her body final said she needed it. This while just today we ran her PRAs. We will not have those results till tomorrow, but please pray for favorable results. My stomach is just upset with worry. Gilly and I are praying for some good news. This is very important for her donor match and therefore for her odds of receiving a heart.
On a follow-up note, all of her cultures have come back negative thus far which is great news. There is no sign of infection so far. They are continuing her antibiotic until tomorrow though to make sure.
Another follow up note. Her irritated canula site is even worse today. Cultures on it showed no infection, but you wouldn't think it by looking at it. I worry that it hurts her, but again it's very hard to communicate with her although we do the best we can.
One other battle we are currently fighting is some fluid build up on her lungs. Her chest Xrays have been looking great and holding steady until this afternoon. An Xray showed quite a bit of fluid built up so we've upped her diaretics and are trying to pull it from her. So far she's responding pretty well and I pray we've dodged havin gto be intubated. (My heart sank when they mentioned intubation this afternoon.)
It's been a long day and I'm ready for a little rest. Please, please lift Ry up in prayer. This is a group of typical challenges that a VAD patient faces and has to work through, I just wish it hadn't happened all at once. I hope she has a better day tomorrow. I miss her smile and it breaks my heart when I know she hurts and I can't make it better. I hate it when she spends the day in tears.
Good night to all, I hope I have a better report tomorrow.

Change of Plans

So as we've always known... this is Rylynn's world and we're all just living in it. :)
Last night Ry did not sleep again. Every 15-30 minutes she's up asking for me to "scooch" her, get a drink of water, change her diaper, hold her hand, rub her owie, etc. We are trying to narrow down what could be bothering her. Could it be her new night-time feeds? Pain? New appetite stimulater? ICU craziness? Unfortunately, she also woke up with a fever. It spiked around 6:00 am. This set off the process of culturing her for many different things from infection to a virus. Cultures take 48 hours to come back, but so far nothing has grown. She also has some real skin irritation at her right canula sight which her body could be reacting to. Until cultures come back, every person who enters her room has to wear a gown and mask. This sooo annoying, but understandable.
So as you can guess this means we won't be moving up to the 8th floor till next week. So we'll sit tight and pray that the fever does not return (hasn't since about 10:00 am). We're also hoping for improved canula sites tomorrow.
Hopefully it will be a nice quiet, eneventful evening. (Except for the thrill of watching Chlidren's MED tonight!!)

So proud!

Every day I'm amazed at what Rylynn accomplishes in her therapy sessions. They really push her and she accepts and conquers her challenges. Today she amazed me! We are proudest parents ever!
The therapist asked if Ry had some shoes because she wanted her to go for a walk in the corridor. This was so exciting and crazy. Rylynn had only taken a few steps at a time from her bed to the therapy bench or vice versa. Today, my little rockstar put on her Sperry's, and took a nearly 10 minute walk around the ENTIRE unit!!!!! It was incredible! She'd stop for a moment to catch her breath and ask for me to hold her, but she'd accept my hand instead and push on. And remember folks... we are a mere 11 days post op and she is on no scheduled pain medication. She simply takes a dose of Tylenol as needed which has been only about once a day for the past several days!
Here's a clip of it. I know it's not the best quality, but you get the idea.

Tomorrow may be a very big day for us here. We are tenatively set to move from ICU to the 8th floor Cardiac Unit. This is such an accomplishment. There have been some kids that never get to leave the ICU (for months and months and months) because their condition is so poor. And most don't make it out for many, many weeks. This was one of our greatest prayers. On the 8th floor life is slightly less uncomfortable. Ideally she will sleep better, play better, live better. We try to think of it as our Dallas apartment with a view of downtown. We pray that a bed opens up and we can make the shift, but if not we hope it's in our near future.

Ry and I miss Gilly so much when he leaves. We had a great weekend with him and can't wait for him to hurry back. He makes Ry laugh the way that I can't. They play their silly games and giggle about nothing at all. I hope when he comes this weekend we'll be upstairs so that the three of us can eat a meal in the same room at the same time! It's been two weeks since we've been able to do that.

Selfishly enough I'm also really looking forward to having a bathroom in our room. I'm so tired of showering in the public shower down the hall. They are supposedly cleaned at 4:30 and I get out there to shower at 6:00, but they still seem pretty yucky. Oh well...

One last thing. Since I know tomorrow may be too busy to blog. Rylynn will be having her PRA numbers checked on Thursday. We should have results by Friday. This is a very critical test and one that we need extra prayers said. This will show us how Rylynn's body responded to the blood transfusions that she has received and ultimately her elgibility for a donor. Please, please pray for favorable results.

I hope you all have a restful night. And I sure hope Ry does as well.