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!

What was I thinking?

I completely forgot a nomination! What was I thinking! I am officially adding my friend Rina. She has an adoption blog called Bringing home Myah. This is an adorable family with three of the most handsome boys you will ever see. They are heading to China shortly to bring home their baby girl, Myah and you can following along on their blog! Rina, will you accept this award!!!!

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!

Nominations

Okay, I just realized that the blog award post posted this morning and I haven't gotten around to letting my nominees know! Opps! I will be doing that today, but, if by chance you see this before then, forgive me.

TA DA!

On my birthday, July 11th, I was awarded my first Blog Award! The award was given to me by my friend over at The Source. She is a high school friend that found my adoption blog and has been following our story. I am so honored that she thought it worthy of this award! Unfortunately, it has only taken me...what, 3 weeks to get around to accepting it!

According to Blog rules:

The winner can put the logo on her blog

Link the person you received your award from

Nominate at least 7 other blogs

Put links to those blogs on your site

Leave messages on the blogs you've nominated

Here's my dilemma. I don't actually follow that many other blogs and the most of the ones I do follow are adoption blogs! I barely have time to write my own! Of course, now that I've seen the list of blogs that my friend nominated for the blog award, I'm very interested in reading those and, of course, she writes a great blog too. But, that doesn't solve my problem now. One of my favorite blogs is not open to the public right now, due to adoption laws, so I don't think I should nominate Never Say Never. Sorry, Regina! Well, I nominate....

Ni Hao Y'all. This blog belongs to an amazing woman of God with a great sense of humor, that has four biological children and now, four adopted children from china, several with special needs.

Waiting Child. This is a blog that belongs to a family from our China travel group. They stepped out in faith to bring home a child that by all accounts should not be alive today. This mother tells of how they found him and how he survived, until they picked up his "red thread" and brought him HOME. This is the story of Yoyo and his amazing parents!

Chinese Starfish. This blog belongs to a South African woman living in China. She operates a small foster home for special needs orphans with the main goal being to get their medical needs attended to using private funds and grants and getting them adopted out to their forever families! Amanda is an amazing woman, fighting a good fight!

Crazy Mommy. This blog belongs to a mom with 2 bio and 2 adopted children from China. Three of the children have special needs, including one with autism. She usually has a very positive outlook and a great sense of humor.

The Ten O'Clock Scholar. This blog belongs to a Christian homeschooling mom of 3. I found this blog recently, while looking for homeschooling blogs and really liked it but I confess that I have only been reading it for a short while and have not had time to go too far back in the archives. So far, so good!

That's it. Like I said, I don't really follow other blogs that much. I could nominate a bunch of blogs that I've looked at and thought were neat but I don't really think that is in the spirit of the award. But, I am still honored to have been worthy to get the award myself!

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!

BFF

Play dates!

Leaf piles

S'more Buddies

Even when the world is upside down

We're on the same team!
Maggie and Isabel
BFF

What could be more special than ALMOST sharing your birthday with your bestest friend in the whole world? Maggie was born 364 days before Isabel and had to wait almost a year for the fun to begin! Due to me being friends with Maggie's mother, Sara, the girls have known each other since Isabel was born. It wasn't BFF at first sight, but over the years the two girls have grown virtually inseparable! So different and yet so much alike, it's crazy. Maggie goes to school and Isabel is home schooled, so they both have other friends...but at the end of the week, it's always Maggie and Isabel!

I have a school friend, Michelle, that I have known since 5th grade. She and I have been through just about everything together. Many other friends have come and gone but Michelle has always been there. I hope Maggie is Isabel's Michelle!

Happy Birthday Maggie Mae!

Birthday Girl!

The Beginning

Isabel Lee Gour

Born July 24, 2001

8 lbs 1oz

No longer the baby of the family, our middle daughter turned 7 today! It's hard to believe that she is so big now! She rides a bike, plays the piano, swims 25 meter laps and reads small books. She can scramble her own egg in the morning and change Claire's diaper. It seems like just yesterday that I was changing hers! I prayed hard to get that baby and we know we've been blessed every single day of her life!

I love my Lizzie! She calls me "Mini Me"!

Beautiful Ballerina

Wild Woman!

Happy Birthday sweet Isabel Lee!

HOME SWEET HOME!

Yesterday began with a wonderful visit with three very neat people! Shane, Anna and Yoyo were part of our travel group in China. Yoyo is an amazing kid and it was so nice to see him doing so well! We hope to keep in touch with this sweet family for years to come!

Claire and Yoyo

Once we got on the road, we made good time....sort of! Let's put it this way, we made as good of time as six people can make when four of them are kids! We finally hit Charleston around midnight. After our minivan vomited it's contents into our living room, we cleared a path and went to bed! It was fun while it lasted, but I think we will try to fly Paul and Claire up for the next appointment. Claire was supposed to have a cast change next week but Lizzie is coming to spend the week with us so we asked if it could be pushed back a week. Lizzie has only been able to spend one day with the child since she came home and really has her heart set on being with the WHOLE family next week. It takes an act of congress to clear Lizzie's schedule so I am NOT asking her to reschedule. We've been planning this all month.

For those of you who do not know me well, let me explain how our summers usually go. I live 30 minutes from the beach and about a dozen other cool things to do and since I do not live near my nieces and nephew, we have them spend part of the summer with us every year. Usually I have nieces and a nephew coming and going from week to week, all summer long. That has not happened this summer because we have been on the road so much. But, we have managed to pin everyone down the the next two weeks! Brianna and Christian are coming on Sunday to stay two weeks. Brooke and Megan are coming next Saturday for one. And the cherry on the Sundae is Lizzie coming Sunday and staying until Friday!!!! A house full! Now it's summer!

Stay tuned for the Many Adventures of the Gour Family!

It's a bird. It's a plane.

It's Superman! We've put thousands of miles of asphalt under the tires of our minivan this summer (5510, give or take) and not once did we come across a giant ball of twine or the world's largest frying pan! I was so disappointed! So, when we stopped at a rest stop just north of Kentucky and saw a sign for a 15 foot Superman statue in the town of Metropolis, Illinois, we could not resist!

Superman and Super Isabel-Noah is escaping in the back ground!




Noah and Isabel, Goofing off!

Sitting in front of the Superman museum and gift shop...oh yeah, this town has it bad! We read that the Chamber of Commerce used to hand out bags of Kryptonite to the kids but had to stop when DC Comics claimed it was a copyright violation!

Our little excursion cost us and we only made it as far as Nashville today. Once we stopped for dinner, we couldn't get it together enough to get back on the road. The original plan had been to get to Chattanooga, but that did not happen. We let the kids take a swim in the hotel pool instead! The good news is that we got a text message from some adoption travel buddies, Anna and Shane, that live near Nashville. They are going to meet us for breakfast in the morning! We can't wait to see them and their amazing son, Yoyo!

On The Road Again...

Meeting cousin Tommy

This is our family theme song for the summer! After a tearful good-bye with Paul's sister and family, we hit it again heading south and east toward home. We had a great visit in Omaha, but it is a long road home and we needed to get some of it behind us. We made it back to the outskirts of St. Louis before we had to get off the interstate for the night.

Farewell picture with Uncle Tom, Aunt Lisa, Christopher and Tommy. Sadly we did not get to see Jessica during our trip. She is a camp counselor for the summer at a camp in Kansas. We missed you Jessica!

Claire is doing great. She is not taking any pain medication and doesn't appear to need it. She snapped back completely to her old self and you would never know she has had surgery except for the familiar pink casts. The kids have enjoyed the travel but I think we are all looking forward to getting home for a while! I just wish I had Dorothy's ruby slippers!

One Step Closer!

Today Claire had the surgery that will make a huge difference in her life. This was the surgery that finishes out her casting correction and will make it possible for her to walk. It was minor, according to medical professionals...but major in our eyes. The nurses took her from us at the door to the surgical unit at 1pm. She didn't even cry, thanks to the sedative they had given her. We got a call in our waiting area about an hour later letting us know that she was done and her feet were fully corrected! Of course, we will have to wait to see the results because she is back in her hot pink casts for a while! We met her in recovery a few minutes later where she was snoozing off the anesthesia. They gave her some oxycodone and wheeled her back to our room to wake up. The nurse kindly warned us that she might not be her normal sweet self for a while. Boy was she right! We got an angry, inconsolable child in place of the girl we'd brought in that morning! It took a good 30 minutes of off and on screaming before she even came close to herself and another 30 to snap back altogether. Thankfully, we left with the child we knew and loved, babbling and laughing, "ready go, car!" We were not able to make it all the way back to Omaha and the other kids so we are in Independence Missouri, crashed in a Marriott off the interstate. Claire is and has been since the day she came into our lives, a trooper. Going with the flow, she got back in that van, and back on the road without so much as a whine. Her pain meds wore off at 7pm, according to the nurse, but you couldn't tell it by Claire. She talked and colored and played for hours past that and then fell asleep for the last bit of the drive.

RECOVERING

Screaming my head off because I don't know what I want and neither does anyone else!

Covering my face because you people do not understand me right now, so I am not going to look at you anymore!

Almost back to Claire!

I am fascinated with this IV thing now...5 minutes later she demands that we get it off her!

Eating everything I can get my hands on at the Cracker Barrel.....because, HELLO, I haven't eaten in 24 hours!

Scheduled!

We got word today that Claire is scheduled for surgery on Friday around noon! So, Paul and I will head back to St. Louis with Claire tomorrow. The other children will stay here in Omaha, Nebraska with Paul's sister because we didn't have the heart to cut the visit that short. The kids are really enjoying their time with Aunt Lisa and they haven't even gotten to see their cousins yet. The camping cousins are due back Friday and we will drive back on Friday after the surgery and go ahead and spend the weekend as planned.

Lisa took us to the Omaha Zoo today. This zoo was a bit different than the St. Louis zoo. Along with the regular zoo exhibits, it had two very nice, large indoor exhibits that we really enjoyed. One was the Lied Jungle (rain forest) and the other was a desert exhibit. When you were in these exhibits you felt like you were really there in that habitat. They were very well done!

In the Desert with Aunt Lisa! Claire is starting to warm up to this new person in her life.

Isabel hanging out with her new friend!

Parker and Noah in the desert!

Isabel, Parker and Noah in the Rain forest

The Feet

I was asked to post comparison pictures of Claire's feet so we can see the difference. I don't really have the best pictures for that because I didn't place her feet in the exact same position each time I took the pictures but this is what I have...

Before treatment

After 1st casts were removed

After 2nd casts were removed

But, the thing I noticed most was the flexibility of her feet now. Where before you really couldn't manipulate her feet into different positions, after each casting it got easier to move them!

SURPRISE!

The nurses unwrapped Claire's feet yesterday and boy did we get a surprise! Her feet looked wonderful, but it was when the doctor saw them that we got our big surprise. He was so impressed with her progress that he said, after this casting she would be ready for her tenotomy! This is several weeks and a casting ahead of schedule! That was exciting and good news and would have worked out great if he could do the surgery next Monday when she was supposed to have her 4th casting. Unfortunately, he's booked! At least at Shriner's so, right now we are waiting to hear if we are approved to have the surgery done at Children's Hospital on Friday. Doctor Dobbs has an opening, but we are waiting for our insurance to pre-certify us. If we miss this window and loose our slot, we will have to wait about three weeks for an opening at Shriner's. Whatever happens, we are certainly happy to hear that he is having such success with Claire!

In the mean time, we decided to take the kids to Nebraska to spend the rest of the week with Paul's sister, Lisa. The drive from St. Louis was not bad and Lisa was very excited to have us. She has lived out here for over 20 years and this is the first time we have been able to visit. Claire has learned to say "Aunt Lisa" but won't get too near her yet. The cousins are at camp and not due back for a few days so we sort of took over the house for now!

Making pizza with Aunt Lisa!

Missouri's Buried Treasure!

We made it back to St. Louis safe and sound, though tired, as we drove straight through this time! We made it in just 17 hours! That was with a 1 1/2 hour stop to visit my parents though. So, we managed to get in around 12:30am EST. YIKES! The kids were wiped out so we slept in. Claire is doing well. No fever today! The antibotics are clearly working but are they working well enough? The last round worked too...while she was on them. We need this round to knock out that nasty bacteria!

I love the weather up here. It is so hot in Charleston but it is so mild here in Missouri! Around noon today we decided to drive out to Meramac Caverns. The kids have never been to a cave before so we thought it might be kind of neat. It was! Meramac Caverns have been touted as "The Greatest Show Under Earth" and made the GORP top ten US caves list. It was a nice afternoon. We saw all kinds of cool rock formations in this seven story labyrinth under The Ozarks.

Noah, Isabel, Claire and Parker with stalactites in the background (yes, I had to look up stalactites and stalagmites, because who can remember which ones grow down and which ones grow up!)

The largest single cave formation in the world-The Stage Curtain! It is magnificent!

Mining fun!

Tomorrow is "casting day" take 3! One mother said that every time they took her daughter's casts off it was like opening a Christmas present! I know what she meant. We can't wait to see what is under that hot pink wrapping!

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!