Dare I share this.....

Besides the fact that my daughter will hang me one day for sharing all that I do about her......the last time I discussed this with you guys, Claire ran for the hills! Shortly after bringing her home we tried a little potty training experiment that went terribly wrong and hasn't been revisited for over a year! Since gaining a lot of the vocabulary needed to talk through this, we realized that Claire is actually scared of....well, seeing her poop. Sorry to be so graphic! But, that's it in a nut shell.

So, we spent the past months desensitising her to this sight as well as explaining to her that she doesn't have to look at it, just put in the potty and flush! She set a goal of working on it when she turned 4. We let her call the shots with this and have been talking a lot about it since her 4th birthday is just around the corner!

Then a few weeks ago she announced that she was going pooh....while in the tub. Not thinking, I snatched her up and sat her on the potty. This usually evokes an episode of frightful crying and clawing to remove herself from the offensive commode. As it happened, this time she was indignant, but not traumatized. So, we went with it. She "accidentally" pooped in the potty and I ran for a treat. Not expecting this, we were fresh out of M&Ms, but my visiting parents had brought chocolate with them, so it sufficed!

She got chocolate, she got lots of praise and she got to flush without looking! Wow! This is fun stuff!

The next morning, Claire made another announcement, so we rushed her to the pot. I went to the store for M&Ms after that. Apparently, this is catching on!

And so, with only a few accidents here and there, we have managed to go in the potty more often than not for about 2 weeks now!

Of course, I'm sharing this on the eve of our long weekend camping trip. Somehow I doubt potty training is going to transfer well to the campground! Oh well. I guess we'll pick up where we left off.

What most people don't understand about why this milestone is soooooo important for Claire, is that she isn't "supposed" to be able to do this. The nurses at the spina bifida clinic told me they doubted Claire knew when she was going, even though I told them that she announced it all the time, often before she is actually going. Due to her other issues, it just wasn't likely that she would have enough sensation to be potty trained. So, while most moms do celebrate the passing of the diaper phase, I am thankful that this is even a possibility for my little girl! WHOO HOO!

Just another day.

To most people that saw Claire today, it seemed like it was just another day in her life. She got up this morning and I got her dressed for the day. Nothing special. She had physical therapy with Ms. Denise. It was fun...but regular. Then we went to the hospital for some tests. All part of life for this three year old. I counted them today. She's had 36 medical appointments since last June. That's if I didn't miss one when I looked back at the calendars. Just another day. We came home, took Isabel to dance class and then swim team for Isabel and Parker. Just another day.

But if you'd seen her a year ago today

You would know that today was not just another day.

A year ago today, she was a scared and confused little girl.

Taking peeks at her new parents, strangers trying to get her attention.

A year ago today, after traveling several hours from a village outside of town, she was taken from the lap of her foster mother of two years and unceremoniously, dropped in mine. We spent just enough time in the orphanage to sign some paperwork giving us temporary custody of her and then went to our hotel. Many of you remember the post I made that day. If not, feel free to look back here. I remember that day very well. I remember that she moved her legs, ever-so-slightly, when she was sitting in my lap and I knew she wasn't paralyzed! I remember that she seemed like she was almost in shock and that she wouldn't have anything to do with Paul.

She played. She ate. She played some more. And then some where along the way....

She realized that something wasn't right. She was not in familiar territory anymore. And, she suddenly did not want to have anything to do with either one of us.

But, she tried to be brave.

When she fell asleep, I was able to take her socks off and get a first look at the her feet. They were beautiful, but we knew she wouldn't be able to walk this way. We suspected that she had club feet, now we had our confirmation.

These little shoes were on those feet. I still have them. They appeared to be handmade....probably by her foster mother.

That night she fell into a fitful sleep. She didn't understand that we loved her. She didn't understand that she was going to have a forever home. Brothers and sisters and aunts and uncles and grandparents. All she understood was that this was not just another day.

Today that scared little girl has come into her own. The child that wouldn't make a sound for three weeks, never stops talking now. Never. She's still talking when I walk out of her room at bedtime! The child that behaved like a feral cat when we tried to bathe her, splashed in the sprinkler just a few weeks ago. The child that China said would never walk, can't be stopped!

Today she is happy and confident. And, we are blessed. Today is the anniversary of her "Gotcha" day and it may have seemed like just another day, but it was not. Unfortunately, her urologist had plans for us today.

So, Claire and I spent this anniversary at the hospital. Claire was not thrilled with this idea, but we have good news. One year after they told us her ureters were ruined and she would need surgery for kidney reflux, this new test proved that God is good! Claire's bladder did not reflux into her kidney's until it was full of 260 cc of fluid, as opposed to 50 cc last year. She will not need surgery, just a little medication for night time. And, her kidneys look wonderful!

So, it wasn't the traditional way to celebrate this milestone, but the good news made up for it! We went home and ordered Chinese take-out for dinner. She got to use her chopsticks......though she doesn't really care for Chinese food much! Go figure!

Wednesday

Yesterday was spent at the hospital. Claire had two appointments. First, she had another ultrasound. When you have bladder issues, an ultrasound is a very noninvasive way for the Docs to keep an eyeball on what's happenin' in there, I guess. Because she has had three of those things in the last 8 months. She doesn't care for them....only because she doesn't really like strangers to mess with her. But, the good news is that she has such a great grasp on English now that I was able to talk to her about the appointment, what was going to happen, how it was going to feel....and she got it! She was still nervous going in. But, she was much more calm than during the other two ultrasounds and I really feel that it was because she had the verbal skills to handle it. She knew what was coming, she trusted me, and she was able to talk to us during the procedure. Amazing the difference that can make! But, she is so cute. She kept looking at the screen where the picture was and saying, "I don't see me in that picture! Where am I?" Then I realized that she understood that we were looking at pictures of her, but I needed to explain that it was the inside of her, not the outside!

Next it was onto our appointment with the NEW urologist. We have been seeing Dr. A. He was the best, but he is about 100 years old and he's getting ready to retire. Since Claire's last visit with Dr. A went so well and he determined that she would not need surgery right now, we felt it was a good time to make the switch. Dr. P is the new guy on the block, but he is hardly new at this. And, he is with the spina bifida clinic at our hospital so our hope was that he'd be very knowledgeable about urology from that stand point. I think we got our wish! Dr. P met with me and Claire was so comfortable around him that she completely ignored the doctor and acted like she was at home. Not always a good thing, since she wandered around the room and interrupted us more than once...but, at least she wasn't terrified. She has been known to be a cling-on when some doctors are around. Dr. A was....ummmmm, (ahem)......shall we say, aloof, and made her nervous. No so with Dr. P! But alas, all doctors are different and come with their own......ummmmm, stuff. Dr. P's stuff involves a whole different set of tests. Dr. A did a VCUG on Claire last year. This involves putting a catheter up into the bladder, filling the bladder with contrast and then watching what happens on an x-ray. Of course, at the time we first did that procedure, she'd never been catheterized and went ballistic on the table. Dr. P does a similar procedure....but, it's different. Same concept, it just involves some equipment to measure pressure in her bladder and will help determine if the amount of pressure in her bladder is going to have a negative affect on her kidneys in the long run. The short of it is that Dr. P seems to be a conservative doctor, which we like, that is aggressive when it comes to protecting the kidneys, which we LOVE! The down side. It's another procedure that Claire isn't going to like. He's going to do one every year until she turns 7. This year it is on HER GOTCHA DAY! Happy Gotcha Day....have a bladder full of contrast, sweety!?!? The up side. Her kidneys may thank us one day!

Isabel went to the appointments with us and did her school work while waiting. She's such a trooper!

Regardless of the news that Claire will undergo more testing...that may lead to surgery, we still had a great appointment. Everything is fine as is for now. That's always good news! And, better news is that Dr. P is up on the new surgery being done right now to correct neurogenic bladder! No, that is not a typo. I know I told you that there was no cure for this and that Claire would always have to be cathed....or would learn to do it herself one day. BUT there was an "unless" in there. We are always on the verge of new medical break-through and it looks like one of those marvelous things may have happened! And, our Dr. P met the Doctor that started it. Haven't heard about this yet? Well, you may not be interested...but, I am and this is my blog!

Apparently a Chinese doctor (how fitting), by the name of Chuan-Guo Xiao, has been working since the 80's on a procedure to re-route nerves in the spinal cord, from the leg to the bladder. He had some success in China and naturally, brought it to this country for further study!

Here are a few links for those of you as excited as I am about this prospect!

http://www.tampabay.com/features/humaninterest/article984049.ece

http://www.allkids.org/body.cfm?id=396&action=detail&ref=369

http://www.canparaplegic.org/en/Research_32/items/23.html

This is not something that we would consider lightly. As with any major surgery, ON THE SPINAL CORD, it has risks. But, this is something that we are planning to keep our eyes and ears on for the next few years. Claire is too young to be a candidate right now anyway. But, if they continue to have good success with this and if she does become a candidate for it, we would be thrilled! And, it's good to know that our Doctor is keeping his eyes on this too.

So, with that said, how about joining us over at the Wednesday Prayer Meetin'. Significant Source is reminding us to give Glory where it is due, and so I thank God for the Doctors that are working to find ways to make life easier for kids and adults like Claire! And, I thank God for our good follow-up visit yesterday and for keeping our sweet girl healthy! Most of all, I thank God that He provided us the means to bring Claire home almost a year ago, and He continues to provide the ways for us to give her a better life!

Potty Talk!

For obvious reasons, we haven't really been discussing potty training our soon-to-be three year old. What would be the point, right? She will not be "peeing" in a potty until she is old enough to be taught to catheterize herself into a toilet. According to the nurse at MUSC, this could be achieved when she is between 8 to 10 years old. And, from what we were told at the Spina Bifida clinic, Claire would most likely experience difficulty controlling bowel movements due to the same nerve damage that causes her to have a neurogenic bladder. When she is older she will need to be put on a "bowel management plan" to achieve social continence. Sounds lovely, doesn't it. But we are prepared to do whatever it takes to insure that Claire can have what is termed a "normal lifestyle". We committed ourselves to it when God said "that one, she's the one"!

That being said, toileting is something that has recently peeked Claire's interest. There are a lot of people in this house and she's seen some of them using that potty thing. Also, I personally noticed that Claire has been able to tell me that she is going to soil a diaper before she does so on a regular basis. I mentioned this to the experts at the spina bifida clinic and they brushed it off as if I was a wishful mother that didn't know any better. Okay, whatever! Claire and I can figure this out without them.

So, as we strolled through Wally-World the other day, Claire spotted potty chairs in the baby department. I asked her if she wanted one. She is a pretty decisive kid and general knows what she wants. If we are in the toy department she will spot a toy, I hand it to her, she plays for a few minutes and then hands it back and says "No". Not that I intended to buy it anyway, because we probably already have it at home! But, this time she wanted it so I loaded the posh pink potty into the buggy and away we went home.

As soon as we got there she insisted sitting on the potty until dinner time, proudly showing anyone that would pay attention. The boys were thrilled! :) "Mom, did you have to take her diaper off! Eewww!" She wanted the diaper off, she knows what is supposed to happen here. She kept saying "Claire go potty". Paul's parents were called to come over for viewing pleasure (they live across the street). Claire was only too happy to show off!

Well, first thing this morning Claire announced that she "go poopy". Now I knew she hadn't yet, because I had just put the diaper on and was holding her, so I asked if she wanted to sit on the potty and poopy. I sat her down and told her I would go make her oatmeal. I returned to check on her and she pointed to the door and told me to "go make oatmeal"! When I returned in a few minutes she said, "put diaper on". Okay, so I picked her up and what do you know, SHE WENT IN THE POTTY!!! We danced and sang and clapped and she looked nervous at us like we each had three heads! It was great! Then I gave her chocolate candy....... because that makes sense right? Then she danced and sang and clapped her hands! "CLAIRE GO POTTY"

Maybe this is a milestone, one the odds said she would never achieve. Maybe it's a fluke. Maybe she will do it again. Maybe she won't. Either way, we love her! Either way, we celebrate her!


No potty pictures but here are some new bath pictures! Is this the same girl that fought like a cat to get out of the tub and screeched when water touched her skin! Unless, it's rain, which she loves!?!?!

Still isn't crazy about having the shampoo rinsed out but doesn't scream anymore! Just whimpers and boy will she fuss at you if you get it in her ears!

She can't get her left foot wet yet so we are still taking modified sponge baths, but she loves putting her right foot in the sink (something that would have brought tears and shouts of "no, no, no" only a month ago).

She loves to make it "rain" and will even let me do a little on her head!

Nothing definitive

I was hoping for a yes or no answer yesterday, but I did not get one. Understandably, this guy does not want to rush Claire into a surgery when she is clearly doing very well right now. While she did run a low temperature on Tuesday evening, it went away on it's own very quickly. And, though she did have cloudy urine, which did not clear up, it also did not get progressively worse. Those were all good signs! One symptom, which you would think would be good, is not. Claire remains completely dry between catherizations. This is very uncommon with neurogenic bladder unless you are taking medications, like Ditropan, to relax the bladder muscle so it can hold more urine. Dr. A. believes that she does not "leak" because she is still refluxing. And, that is not good.


At our last visit, Dr. A put Claire on a regimen of twice a day antibiotics for a period of 30 days. He intended her to refill this bottle and continue on, but he failed to put a refill on the prescription so I thought he meant for her to stop them when the bottle was empty. She did and he was impressed that she did not have a full blown relapse but he thinks it is best if she stay on prophylactic antibiotics. So, we are back on Furadantin, but only once a day now to see how she does with that.


He is "cautiously" hopeful that her reflux and the condition of her ureters will improve with antibiotics and CIC (clean intermittent catheterization), but he still feels that in the end, she will benefit from ureteral reimplant surgery. If she has another UTI in the next three months, then it's a done deal. Otherwise, we continue as is until December. On December 3rd, Claire will go in for another renal ultrasound and VCUG (voiding cystourethrogram). This test will check the condition of her bladder and ureters as well as expose the level of reflux she has. The first time she had this test she was at a level 5 on a scale of 1-5 with 5 being the worse! Many children improve once CIC begins but I say the Doc is "cautiously" hopeful because he admitted that a lot of damage was done to Claire's bladder and ureters during her life in China and he isn't entirely sure that she can recover on her own. He also feels that while her kidneys are still in good shape, she lost some kidney tissue to damage (this was the first anyone mentioned of this) and he doesn't want her to sustain anymore damage caused by continuous reflux and infections.


So, I guess my answer is.....we still don't know. He sounds like he really feels she needs the surgery but he wants to give her body some time to heal itself first.


One question I am often asked about all this is "will surgery cure her condition?" The intention of the surgery is to eliminate the reflux issue. There is not a "cure" for neurogenic bladder. The nerves that control Claire's bladder were damaged as a result of her spina bifida. In other words, she was born this way. At this time, there is not a way to repair those nerves so there is no way to "cure" this condition. It can be managed and many, many children and adults do just that. As Claire grows older, she will be able to learn to catheterize herself. Though I have exposed her "secret" to all our family and friends, not to mention strangers on this blog, theoretically, she could go through her adult life without her friends even knowing unless she choose to bring them into the loop. It is my hope that she grows up to understand that God made her this way and that it is nothing to be embarrassed or upset about so it doesn't matter who knows. Realistically, I know she will go through a time when she doesn't want everyone discussing these aspects of her life. But for now, we act like it's nothing unusual. Maybe I'm wrong, but I think that's a healthy attitude. I just have to hold onto the thought that the Father chose us for her and that He knew how we'd parent her. Hopefully He won't let us make any mistakes that can't be rectified!!


For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.


~Psalm 139:13-14

Our happy girl!

Finally!

Sisters!

I finally have some answers! We finally have a plan! Claire finally got to see the urologist! We had our appointment with Dr. Aaronson this afternoon. He is a small, grandfatherly British man and according to everyone I talk to, the finest pediatric urologist on the East Coast. He did, what I thought was a very thorough examination of Claire with history and went over her ultrasounds and other tests with me.

His decision about the bacteria in her urine that is causing her urinary tract infections, is to continue with the antibiotics she is currently taking. But, instead of coming off them after the ten day round, she will remain on them, at a lower dose, for thirty days. He believes that this may give her the chance to actually eradicate the little critters! Not once, did he mention putting her in the hospital for IV antibiotics!

He also took note of her reflux issue. Claire lived 2 1/2 years with a neurogenic bladder. Her bladder never emptied and only when it could hold no more, would it overflow into her diaper. Therefore, her bladder is misshapen, thick walled and she has a reflux problem. Urine re fluxes back into her kidneys. Because of prolonged reflux, her ureters are very large now and she actually re-fluxes freely. This means that urine will go up into her kidneys even without her bladder being full. For example, when she lays down, urine will flow out of her bladder and up into her kidneys. So, part of her problem is that even though we catheterize her now, some of the urine hangs out in the kidneys until after we are done. Then we sit her up and it comes back into her bladder. When a child's bladder doesn't ever empty completely it increases their chances of getting urinary tract infections. If she can not get rid of this infection after 30 days of antibiotics, Dr. Aaronson believes that she needs to have a small surgery to have her ureters reattached to her bladder. He already scheduled us for a return visit to reevaluate this in September. He was very honest and let me know that he feels certain that she will need this surgery. But, he made it clear that it is also important to clear up the infection first anyway.

I felt much better leaving his office today. I feel like we have a plan of action and now she is in his system so if we have a problem (like a relapse on the lower dose of antibiotics), Claire WILL get in to see him. He made that clear!

Lizzie bonding with Claire!

WE ALSO, FINALLY GOT TO SEE OUR LIZZIE! She came down on Sunday and stayed until after dinner tonight. It was a very nice visit. She spent a lot of time with Claire and though it took a day, Claire warmed up to her. She gave Lizzie a hug AND a kiss before she left tonight! The kids loved having her back for a while. She played video games with the boys, did a make-over on Isabel, orchestrated a treasure hunt for Isabel's birthday and made her famous shrimp and grits dish for dinner! She is an amazing young woman and we are so fortunate to have her in our lives!

The boys decided to "join" her in the chair!

Then Isabel had to get in on the pile-up too! Poor Lizzie, she loves her personal space.

Can you say SQUISHED!

And, last but not least, we FINALLY got to have a niece and nephew in for a visit. I've been trying all summer. Usually, by now, we would have had them all for several weeks. Not this summer...it's just been too busy. But, finally we got Brianna and Christian here! They came in on Sunday with Lizzie and are staying until next weekend. I love having a full house! I prefer it to be busting at the seams, if at all possible. That's why we are adding two more on Saturday....Brooke and Megan!

Christian found a treasure map in the crib!

Wasting Time!

Well, if you know me, you know I don't have time to waste. Especially, not right now! But that is exactly what yesterday's doctor's appointment was! A HUGE WASTE OF MY TIME! You know it isn't good when the doctor comes in the door, looks at you and says "I'm not sure why you are in my office, you don't belong here!". We had been sent on a wild goose chase! Like I have time for chasing geese!

Back to square one, we need to see a UROLOGIST! That's right folks! The doctor we have been trying to get an appointment with for two months! I "kindly" explained that to the Nephrologist yesterday and he admitted that our problem was with the system at MUSC. So, thankfully, he cut through some of the tape blocking us and got us an appointment for this afternoon with the Urologist. Of course, we are being "worked in" on an already overbooked day so we were told to plan on being there for a while. But, hey, at least at the end of day, we may have some answers.

In the mean time, enjoy these pictures.........

My new favorite thing to do....."paydough"!

The doughnut mommy got me for making me go to a doctor's appointment I didn't need!

I'll update again tonight to let everyone know how the appointment went and to share some pictures of our house guests! Yes, on top of everything else, we have been visiting with our Lizzie and also with a niece and nephew, Brianna and Christian! It's been fun, but, as usual, WILD!

Okay, skip the ER

As we were walking out the door to head to the ER, Claire's spina bifida nurse called. She told us NOT to go to the ER. We had left a message with her as she is our "go to" at MUSC. She explained that this is an infectious disease issue not actually a urinary issue and we need to see a Nephrologist not a Urologist right now! Hmmm? A Nephrologist is a doctor that specializes in kidney diseases. She got us an appointment with the best one at MUSC for Tuesday morning. In the mean time we are heading over to MUSC to get a urinalysis and culture done so she can get on some more antibiotics, but they are concerned that this may not be the same little critters as last time so they won't put her on anything until they know which critter it is! But, they will put her on something by the end of the day and she will remain on it until the new doctor, in the long line of Claire's specialists, figures out what the main issue is and can address it! Thank goodness! We have averted a hospital stay thanks to Stephanie, the super-nurse!

Cloudy Days

Please pray for Claire today. We are heading to the ER in a few minutes. She has been 5 days off the stronger antibiotics and as we feared, they did not do the trick! Her urine began clouding up last night and we started the morning with very cloudy urine and 99 temp. Based on what happened last time, she'll be running 104 degrees by this evening. Apparently, the ONLY WAY to get the urologists attention is to go to the ER. We've been told that she will most likely be admitted and put on IV antibiotics. That's fine, we just want her to get over this...YESTERDAY!

E. COLI

E. coli is a nasty word, especially when it is attacking your child! Claire had a routine urinalysis during her very first appointment at MUSC. Shortly after that day, we were instructed to begin catheterizing her and we left town for St. Louis. Apparently the results from that urinalysis were not back until we left and unfortunately the nurse had misplaced our cell phone numbers and could not contact us. They had found e. coli in her urine! The Urologist thought it might have been in her system long enough that she was not affected by it since she was in good health when that specimen was taken. That can happen with children that have neurogenic bladders that do not empty. Bacteria will colonize in their bladders and they become able to keep a balance of good with the bad. But, he wanted us to know because she could become very ill. As you know, while we were in St. Louis, that is exactly what happened and we had to take her to a local urgent care clinic. They also did a urinalysis, and due to her symptoms, they went ahead and put her on an antibiotic for urinary tract infections. They too found e. coli in her urine but by the time we found out, we were at home where we were greeted with an answering machine full of messages about the two urine tests. At this point, she had been on antibiotics and appeared to be back in good health! When we went to her Spina Bifida clinic appointment, another urinalysis was ordered to see how things were going. The nurse did note that Claire was running a slight temperature though. Yesterday when I went to get her out of the crib I immediately knew something wasn't right because I could smell foul urine. When Paul got home from work, I let him know. This reminded him that the nurse from MUSC had in fact called him and told him that her results were back and she still has the e. coli in her system! They told him to notify them if she had foul smelling urine or ran a high temperature. This morning we let them know and they called in a prescription for her. By the time we got it filled she was running a 104 degree temperature. The nurse, called to let us know that we were to give her this medicine every 6 hours, even to the point of waking her up to give it to her! She said that if this does not knock it out, Claire will have to be hospitalized to have IV antibiotics administered!

Tomorrow morning, at 7:00am we will pull out of our drive way heading for St. Louis again. Thankfully, we found out about this before we left and she is on the best antibiotics we can get her on. Please pray that this drug will do it's job. I can not imagine her having to stay in the hospital!

The Appointment

Enjoying my favorite snack, yogurt!

Well, it wasn't as comprehensive as I had hoped it would be. We did not see a urologist. Apparently, they are all on vacation right now. And, because she already saw the Neurosurgeon, we did not see anyone from the neurology department. Basically, we spent the entire visit with a doctor that specializes in child developmental, answering developmental questions so they could decide her developmental age...the same thing we did at our adoption clinic appointment three weeks ago. I did find out that her overall developmental age three weeks ago was 10 months, and yesterday she placed at 21 months, so that was good news. She scored so low the first time because of her lack of verbalization. She is making leaps and bounds progress in that department! They made lots of comments about how smart she is and how good she looks. That was it. Come back in two months so we can see where she is then. In the mean time, we will get in to see a urologist and they will schedule the orthopedist once she gets out of her casts. I guess at this point everyone is just waiting to see if she will walk and how fast she can catch up on talking!

The main health issue now is her kidneys and bladder and at this point, we are doing all we can by catheterizing her every 3 hours. When she gets to see that elusive urologist, he will be able to tell us if she needs surgery and exactly what condition her kidneys are in. They all seem to be shocked that she has lived this long without major kidney damage considering she did not void at all, other than overflow. In spina bifida children, they are born with a bladder that works or they are born with a bladder that doesn't work, so obviously she has been this way her whole little life. The nurse told me that she had a patient whose parents didn't cath her like they were instructed and within 3 months she was in kidney failure! So, how is it possible that our baby girl is still alive! I believe in miracles.....

They did take another urine sample to do another urinalysis because the last one they did showed some pretty bad bacterias, hmmmmm, maybe that's where the urinary tract infection came from! Unfortunately, we will be out of town when the results come in so, we would have to take her to another urgent care facility to get a prescription if she needs one. Good grief! Hopefully, the Augmentin she just finished has knocked it all out!

On the bright side, the local Shriners here in Charleston have said they will reimburse us for our travel expenses, fuel and hotel, when we have to take Claire to the Shriner's hospital in St. Louis!!!! This is a huge relief! They were excited because we weren't asking for help with flights! They said they get lots of requests for flights and that is so expensive, but they were more than happy to pay for our fuel and hotel bills!

Isabel cutting up at the beach with her number one bestest friend in the world~MAGGIE MAE!

The kids have enjoyed these two weeks at home to reconnect with their friends and finish out the swim team season. Our last swim meet is tomorrow night! We spent a few hours today down at the beach with some friends and the kids have plans with friends for the rest of the week. Then we round-em-up and move-em-out again!

Claire, goofing off at a swim meet!

A good day with a bad ending...

Yesterday we thought we would take a "quick" trip over to Petersburg, Kentucky and stay the night so we could go to the Answers in Genesis Creation Museum today. Okay, St. Louis to Petersburg, outside of Cincinnati, Ohio, is not exactly a short trip, but.... it is closer than if we had come from South Carolina, so we figured it was our chance! We listened to our Jonathan Park CD's to set the stage.

Claire was a little fussy last night, which is not normal for her, so I thought the casts were bothering her. It annoys her a great deal that she can not move easily in the crib. I also had to get up with her twice to change her diapers so apparently her stomach was a little upset too. But, she was doing pretty well this morning, considering she isn't much of a morning person anyway. So, we headed out to the museum.

We spent the entire day out there. It was very nice to be in a real museum, full of scientific and historical facts that did not claim the theory of evolution as a matter of fact for any of it! The weather was very nice as well, so we were able to enjoy the lovely gardens and petting zoo they have. Claire does not like to be near animals of any kind so she just sat safely in her stroller and watched! We also enjoyed the scavenger hunt for kids and the special effects theater.

Dinosaurs are cool!


Camels tickle when they eat from your hand!

Even though Claire seemed fine today, we noticed that when we catheterized her, her urine was getting cloudy. As the day went on I felt like she was running a temperature and by the time we got back to the hotel, she was definitely running one. We have called our doctors and we are observing her right now. She was already on antibiotics in case of a urinary tract infection. Obviously, she has been in lots of situations in the last few days that could have exposed her to a virus but cloudy urine is not a good sign. Paul has gone to get a thermometer because I forgot to pack ours. If her fever continues to go up and she gets any more ill, we will have to take her to the hospital. Please pray for healing for her! If I do have to take her to the hospital, I want it to be the Children's hospital in St. Louis.

Our plan for tomorrow is to head back to St. Louis. We will stay there until after Claire's second casting on Monday and then head home. Hopefully, she will feel up to going to the zoo one day, which is FREE! As a matter of fact, there appear to be quit a few free and interesting things to do in St. Louis.

Update

Well, there is great news and not so good news. First, the great news. On Wednesday we had the appointment with the International Adoption Clinic. Claire did beautifully for the team. She was examined by two doctors and evaluated by an occupational therapist. She scored 28 months (she is 31 months old) developmental for fine motor skills and will not need any occupational therapy! They said she is very intelligent... but we knew that! For obvious reasons she scores much lower for gross motor skills and verbal skills but we will address those in time. Her gross motor skills will be reevaluated after her feet are corrected and she may need a little physical therapy. They noted that she may walk but may need AFO's. AFO's are plastic braces for the legs that go from the foot, up the calf and stop at the knee. No big deal! She also may need some speech therapy but we are going to give her a little more time before we start that. She has a lot going on right now and we know that she would not cooperate yet anyway!

While we were at our IA clinic appointment, a spina bifida nurse happened to be on the floor and hear that the doctors were evaluating a spina bifida toddler. She asked if she could sit in and she gave me a notebook on spina bifida. It was wonderful to have this other resource in the room that had extensive experience with spina bifida! She let me know that there was no sign of tethered cord. Tethered cord is when the spinal cord gets attached to the spine, sometimes due to scar tissue. This happens in spina bifida patients and can be very damaging. That was a relief! She also told us what to look for and got us an appointment with the Spina Bifida clinic for when we get back from St. Louis. She was really positive about how well Claire is doing!

The "not so good" news is that while talking with her, she became concerned that Claire's bladder may not be functioning properly. This has been my concern too, as I noticed that she did not seem to wet enough diapers during a day. One of the affects of spina bifida is that it causes nerve damage to the nerves that control the bladder and bowels. Often the bladder will never completely empty and may not even void except when it "overflows". The great thing was that the spina bifida nurse was able to get the radiology department to fit us in for some tests this morning because this can be a serious issue. So, Claire had an ultrasound and a a test for bladder reflux this morning. The ultrasound went well, in that she has two kidneys (it is common that there only be one) and they are both functioning. Then she had the reflux test. For this test, they catheterized her, emptied her bladder and then filled it with contrast. They were checking to see if the contrast backed up into her kidneys and also if she would void all the contrast out. On a scale of 1 to 5 with 5 being the worst, Claire scored a 5 for reflux and she definitely does not void properly. This was not good news. So, I called the spina bifida nurse, Stephanie and asked what we should do at this point. She knew that we had an appointment with the Neurosurgeon today and said she would speak with a specialist about the report on Claire and meet us there! I will have to say that I have been very impressed by the staff of MUSC! They have gone above and beyond to help us!

Stephanie came to us after the Neurosurgeon left and she explained that Claire is going to have to be catheterized on a schedule to keep her kidneys healthy. She then tried to train us to do it. Claire was less than cooperative but, we got the general idea and left the hospital with a backpack of catheters and a little post traumatic syndrome! Once home we were quick to call our dear friend, Joanne. Joanne is a pediatric nurse and graciously came to the house at 6PM and 9PM to help us while we adjust to this process.

While a neurogenic bladder can be a very serious issue, the negative affects can be reversed at this point. We were told that this is something that can be easily managed and that Claire will come to be able to do it for herself in time. Our first day was a tough one, but they promise it will get better!

Now, about that Neurosurgeon appointment. The doctor said that according to the MRI, Claire does not have hydrocephalus! She does have larger than usual ventricles or cavities in her brain but they are not so large that he would be concerned. Her actual head circumference is completely normal and she appears to have good drainage! He does want to do a follow-up MRI in 6 months to be sure there is no change, but he thinks she is fine!

I know many of you have been and are praying for Claire and we so apprieciate this! Please continue. She has so many things to get used to right now and we just added one more, not to mention that she is supposed to begin her casting on Monday! We also heard that there is flooding in the St. Louis area so we are concerned but will be checking with the hospital tomorrow. We are hoping we will not have to postpone her treatment but we don't want to put our family in jeopardy either!