Mission "Pee in Potty" Accomplished!

Rhian peed in the potty! Normally, I am only this excited about pee when Jacklyn goes in the toliet!

Rhian said, "Mom! I've gotta pee! Like right now!" I said, "Okay, I'll call the nurse." She said, "I'm gonna pee the bed!"

So I jumped up and started pulling cords and moving her as quickly as possible. She got a little dizzy, and I got a little worried. But on very wobbly legs, the nurse and I managed to get her to the restroom in time.

On the way back to bed, she decided she wanted to change into her new pajamas, which was no small feat considering all the cords she has on her. But they were able to take a few of the cords off, and change the IV covers to smaller ones, giving her a little more mobility.

The nurse brought the BladderScan in, and she had 14 ml left! That is nothing! Praise the Lord! (by comparison, the scans last night said she had 145ml and 130ml--not so good) You should have seen the smile of relief on Rhian's face to know that she did not have to have another cath!

She wants to get up and walk to the playroom, but I told her it would have to be after lunch. I'm a little afraid of her wearing herself out! She was really wobbly and weak earlier. But I will let her later...

She just said to me, "I feel like a little old lady."

When I laughed and asked why, she said, "Because I can't walk very good..."

"Well," I said, "You can't walk very WELL."

"Yeah, whatever, WELL..." Back to being Rhian...

Then she said, "I am so glad that I went pee!"

"Me too..."

Ready to Launch, But Weather Prohibits...

So to say that I am tired is a complete understatement. I am exhausted, and sadly, I look exhausted. I had a little bit of a crying session last night on the phone with David, who as always was completely reasonable and understanding. He is a rock.

Yesterday afternoon and evening were trying to say the least. Rhian was incredibly cranky, completely unreasonable when it came to meds, and belligerent to me and the nurses. Very unlike her, but between being in bed for several days, and the steroids, which are known to make people cranky, she was unbearable.

Her mood may also have been a side effect of her biological mother, Carmen, coming to see her. While she was excited at the thought of her visiting, she was less than thrilled to see her, and became increasingly cranky. She seems to have that effect upon Rhian--I'm not sure why...And of course, it was stressful for me--it stresses me to have her around to to be forced to be nice to her. I know, that sounds terrible, but it takes every thing in me, and LOTS of prayer to be nice and pleasant to that woman.

They let Rhian start sitting up yesterday, about one hour with each meal, and they took her catheter out. So yesterday evening, we used a bedpan to let her use the restroom, and the nurse was supposed to measure what was left in her bladder by putting another tube "up there." Due to Rhian's hysterical screaming (even though no one had actually touched her yet), and her kicking and tensing her legs, the two of us could NOT get it done. (If we were at home, and she didn't have a three inch incision in her back and spinal cord, I would have spanked her hiney for such behavior!!!) So, the nurse called the doctor, and he said she could do a bladder scan instead. Its some kind of sonogram machine that tells the amount of urine in the bladder.

So, of course, by this point it was shift change for the nurses, so the first nurse didn't get it done, and the second nurse didn't really realize it had to be done immediately afterwards...So, when the doctor came in to talk to me at 11:00pm, he was NOT happy that the nurses wasted a "void," and that we didn't have a bladder scan yet. He fussed at the nurses, and said it must be something in the air with the nurses, he had trouble all day. Rhian's evening dose of Motrin--the only pain killer she is on right now--was also two and a half hours late.

Rhian went to sleep early, and I calmed down, and the night went much better. David has called me about four times...I think I kind of freaked him out. He worries about me--and that makes me feel good. He has promised to come down today, and he is going to stay with Rhian tonight so I can go to a friend's house to get some sleep.

I called and talked to the little girls last night, who are at our friend Amy's house. Apparently, earlier in the day, they had found a dead rat in the barn and brought it into the house to tease Amy with...and so, just before I called they had gone into Carlee's closet to get their pajamas, when--A brown ribbon with a ball of hair attached to it got stuck to Elizabeth's clothing. Carlee yelled "Mouse!!!" sending all three girls and Colton into a tizzy. Amy was still laughing when I answered the phone, and she said Chris was laughing so hard he was crying! While I was on the phone, Amy had to reassure Jacklyn about six times that there were no mice in her house, and that it was safe to go back in Carlee's room, and that it was only a ribbon! Once again, those girls are having such a great time, I am sure they will never want to go home. But, then, it is Christmas, and I can probably bribe them with gifts...

So, about midnight and 6am, Rhian had to go to the restroom, so we finally got her urine measured (yuck--this is exactly why I did not become a nurse!) and two bladder scans done. But she is holding too much urine in her bladder, and so...we may have to do another catheter. She still has one bladder scan to go, and hopefully she can get up to the toilet to do it, so maybe her bladder will empty more fully. This is the one thing that is keeping her from going home. So, we will probably go home tomorrow rather than today.

SO!!! All that said, Rhian is in much better spirits this morning, is sitting all the way up, and wants to go to the playroom today. I left the room to get breakfast without her falling apart, and I am looking forward to getting her up and out of bed. She is doing well, all in all, as long as I can keep her spirits up--but her moods seem to be as changeable as Oklahoma weather--So, keeping with my space adventure theme--we are most definitely ready to launch, but weather is keeping us grounded...

T-1, Or at least we think...

So the doctors say that Rhian may be able to go home tomorrow. She is allowed to sit up for meals today, and they removed her catheter. She can get out of bed to use the bathroom, but its been fours hours, and she still doesn't feel like she has to go...


She is very bored, even with my attempts to keep her entertained and happy. My dad came to visit last night and took me to dinner while my mom and my stepdad stayed with Rhian. I needed some time out. It was nice, but it took us much longer than I thought it would, and I was a nervous wreck about trying to get back to Rhian.

Dad stayed in OKC last night, and is here today. Rhian and dad have been sending text messages back and forth to each other--even though they are sitting three feet from one another. Just like my mom, dad is good company for Rhian. He does funny things--like dance to music on commercials--and makes her giggle. There's nothing like a silly grandpa.


On a different note, have you taken a shower in a hospital lately? It is completely miserable...they must be designed by insurance company reps to get you to go home faster.

And I then I decided to not straighten my hair and let it dry naturally. My dad walked in this morning and said, "What did you do to your hair?" So I explained that I did not think it would be good to run my blow dryer for 20 minutes in a children's hospital...and he said, "Oh, its just been a long time since I have seen you without your hair fixed." Thanks, dad. Then he offered to pay for me to find a salon that would do my hair for me. Can it really be THAT bad? Oh, well...I suppose I'm not here to win a beauty pageant.

And what is it with night-shift nurses? Are they grumpy because they have to work all night? Or am I just grumpy because I'm exhausted. Whatever it is, night nurses and I do not get along...

I had not realized how addicted to exercise I am. I have not run in over a week now, and I feel wierd--antsy and panicky. Like my legs need to MOVE! I know, that's weird. No one actually likes to run, and certainly not me. I think about a post I wrote this April, when I lamented the cruelty of running and exercise in general. But now, its a completely different story. If I could get away to run three or four miles, I would feel soooo much better!

But considering that Rhian refuses to let me out of her room for more than 10 minutes, and won't eat or take medicine without me here, I'm pretty stuck...She has no idea the suffering she is putting me through, not only now, but when I have to start running again next week. Goodbye four easy miles, hello huffing and puffing.

But you know, for all of my complaining, I wouldn't want to be anywhere else. She is, even through her grumpiness, a joy. She is tough, and strong, and is handling this much, much better than any of us grown-ups would. She is most amazing little girl I know.

Post-Surgery Day Three

Okay, so I apologize for the boring title of this post, but that is how I feel. Its like I am on a long-term space adventure, journaling the progress of the mission. So imagine me, leaning into a microphone..."Post-Surgery, Day Three...It has been a slow day, full of grumpy nine-year-old crying..."

Rhian is healing very well. Her incision looks great, she has no infection, and her pain seems to be completely under control. But boredom and sadness have set in, and she is not a happy camper. She is somewhat unreasonable when it comes to taking her meds or rolling from side to side, and I have had to tell her to be nice to the nurses more than once. But since her last dose of Motrin, she is a little more cooperative and calm, telling me that she may be in more pain than she is willing to admit.Dr. Mapstone says she is doing exceptionally well, and that she will be able to start sitting up tomorrow (Praise the Lord!), which may help alleviate her boredom (you can only do so much laying down!). They will take her catheter out tomorrow, and she will have to get up to go to the restroom. I am not looking forward to this, considering how unwilling she is to move, and I have a feeling she will be extremely unwilling to get up when she realizes how much it hurts. But--good news is--If she can pee (basically, if her bladder can control itself after the nerves being messed with), she can go home!

So, we may be home as early as Sunday! Which will be good for all of us.

David's mom, DeeDee, stayed with Rhian last night, while I made a quick trip home to do laundry, take a much needed shower, and get some sleeeeeeep! Mimi and Rhian had a great time together, reading books, watching movies, and putting on press-on nails.

The little girls are living it up while we are here in OKC. They have been with Mimi for a few days. And after eating popcorn and ice cream for dinnner (I am NOT kidding), they weren't too excited about having to return to mom's rules last night...And today, our friend Amy Potter picked them up from school and will keep them over the weekend. After a weekend of playing with the legendary Carlee and Colton Potter, they will never want to come home!!! Elizabeth has all kinds of plans...all I can say is, good luck Amy!
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So I wrote the first part of this post just before my mom and stepdad arrived...All I can say, is thank God for Grandmas and their ability to be patient through an endless number of board games. Rhian is much happier this afternoon. We have changed up her meds a little, and therefore she is no longer getting to the crying stage. I think she was hurting without knowing it.

I cannot blame her for wanting to go home--I have not been able to go for a run for a week now. A week! I feel terribly antsy and ready to run!!!

Hopefully, before I have a chance to write another post, we will be home!

Waiting...

David and I are sitting and waiting. Which neither of us are good at. I'm trying to work--to no avail. And David is bugging me...because, of course, he didn't bring anything to read or work on...And, with nothing to work on, he is left to his own devices and sources of amusement. He is a people watcher, and no one is immune to his criticism. I just shush him and pray that they cannot hear him...Oh, what fun to be in public with my anti-social cowboy husband!

Okay...so now we know that Rhian's surgery went well and she is starting to wake up! Now we are waiting to go back to see her...Gotta pack up the laptop. More details and photos a little later...

Send Your Blessings to Our Little Blessing!

Here is the address of the hospital for sending cards and well wishes!

1200 Everett Drive
Okahoma City, OK 73104

So sometimes the irony of things crack me up...for anyone who doesn't know, my brother--Rhian's biological dad--his name is Everett. Funny. Just Funny...

Rhian's Spinal Cord Surgery

Rhian Grace is having surgery on her spinal cord Wednesday, December 16th.

This summer, Rhian's back surgeon found an abnormality on her MRI. Good news--he may have found what is continuing to make her spine curve. Bad news--it requires a nerve surgery to release the tethered cord. This involves taking off the back of one of her vertebrae, cutting open the spinal cord, and cutting the nerves loose. It is a rather risky surgery, but it must be done, and she is one tough little cookie! She has proven that time and time again…

But to tell you the truth, I am terrified--but I know that God is in control. And I would never let Rhian know that I am scared. I keep telling her, "they do this all the time...God has blessed these doctors with the talent and the knowledge to heal...God will help you to heal...you are special for a reason." But its still hard to put your child through a surgery like this...

For more explaination: http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/tethered-spinal-cord/

Dr. Mapstone, the neurosurgeon doing the surgery, says that this should be the miracle that we have been looking for to straighten her spine. In fact, Dr. Puffinbarger, her back surgeon, was thrilled to find the cause of the curve. However, he says he will give her six months after this surgery to start seeing marked improvement—and if she doesn’t then he is going to insert growing rods in her back. He says that it will be necessary for her torso to be long enough for her to have enough lung capacity to support her as an adult. Scary, scary…But I am firm in my belief that this is the miracle that we have been waiting for!

So—on Tuesday, Dec 15th, we will head to OKC to get her checked in to The Children’s Hospital at the OU Medical Center (near the Capital and Bricktown). Her surgery will be Wednesday, Dec 16th at 7:15 am. It will last about two hours, and then she will be in PICU for two days. In the PICU she will have to lay perfectly flat in order to prevent her spinal fluid from leaking from the incision.

Her hospital stay will be 4-6 days (returning home right before Christmas!), and she will not be able to return to school for four weeks. So—we would love to have anyone willing to make the trip to OKC or to the house come to see her! She will be bored, I am sure, and David and I could use the company!

A lot of people have asked how to help. We need activities for Rhian to do while sedentary. She will have to be very still for a very long time. So any puzzles, board games, or DVDs that you would be willing to lend, we would appreciate. Please mark everything with your name, and we will return them when Rhian returns to school mid-January. (I promise everything will be kept out of the little girls’ hands—and therefore unharmed!) Also, Rhian loves to do crafts, to be read to, and she would appreciate visits from friends and family. She will be doing schoolwork at home—so anyone willing to teach math will also be appreciated!! :) jk

I would also love for Rhian to be showered with cards, artwork, photos, etc. from friends and family. She loves cards and would treasure your encouraging words!

The little girls will be cared for while we are in OKC by David’s mom and our friend, Amy. David’s parents and my parents will be down in OKC helping us care for Rhian. David will be coming back and forth, feeding cattle, and therefore, anyone willing to feed my handsome hubby some dinner would get a gold star for being a great friend!!!

I will try to keep everyone updated via Facebook and this blog.

Please pray for the surgeons and for Rhian. We are confident that God has his hand on this situation, and that the surgery will go well, she will heal quickly, and she will grow straight and tall! But Rhian is beginning to get very nervous, and asks some pretty tough questions. Please pray for me to be calm, to have insight, and the right words to say to alleviate her concerns.

Someone recently asked me how I keep from being angry--I'm not sure whether she meant angry at God or for Rhian's life being so difficult. I went through that, but you know, really I have nothing to be angry about. Rhian is a blessing--a blessing that David and I chose to take on. She is wonderful, she makes our lives more full, and my job is to encourage her. My job is to make sure that Rhian is not angry. My job is to make sure that I approach her challenges with a positive perspective so that she will grow into a strong, confident young woman. I am proud of the young lady she has grown into. I am proud of how "normal" she is. I am proud that unless I tell someone, they think that she is my daughter--not my niece--but my daughter...and I love that. She is MY daughter...

Your prayers are appreciated.