2nd Casting Day

Today was the day that Claire's first casts came off and the second ones went on. She was less than crazy about the saw they used to remove the fiberglass top of the casts! Once the casts were removed she was ready to go home! "Ready go", she kept saying! We could see some change, but mostly in the left foot, which seemed to face forward more. Once the casts were off, they put us in a room and let us wash her legs and feet in the sink. She really needed a full fledged bath, but at least her feet got a good scrubbing, because those toes were smelling rank! Then I lotioned them up, which she loved helping with. After that, Dr. Dobbs put the second casts on. He is pretty positive that she only needs three more casts. However, he is going to China to train doctors next week so we will not be back for our next appointment until July 14th. She will also have an appointment on the 21st because Dr. Dobbs is not casting on the 28th and they don't want her to go three weeks between castings! So, it looks like her surgery and last casting will be on August 4th. The cast on her right foot will have to be removed three weeks later and the cast on her left, about 4 weeks after that.

I don't like this at all!

Not finished yet, but on the way!


Playing with Parker!


Oh no, not again!

Now I'm ready to go!

Science in St. Louis

Good Morning! I'm feeling better today!

The Gulkes and the Gours

Isabel, Becca, Josh, Brett, Noah and Parker

Today, we started off with the free breakfast bar at the hotel with the Gulkes and then headed over to the St. Louis Science Center. This humongous museum is free! Yes, FREE! Have you noticed the theme here. WE LIKE FREE STUFF!

We started at one end and went through it to the other end. It was completely hands-on, which is good because when we are in places like that our kids can't keep their hands to themselves! We spent hours there and still didn't see all the exhibits but we had a great day! Karla's sister met us at the Science Center and helped us find a good restaurant. Thank you Maria! At the end of the day, we had to say good-bye to our friends. It was such a great visit!

Isabel, Becca and Noah built a space shuttle


Are those hamsters in that wheel? Oh, it's Becca and Isabel!

Sharing a little rock candy, thanks to Mrs. Karla!

Having a few Mia moments!
Who can resist those cheeks! How big is Mia...sooooo Big!

Getting my Good-bye kisses from Brett!

And that's all I got to say about that!

Friends!

Going to lunch

Last night I opened my email to find something exciting! Our dear friends, the Gulkes, live in Illinois and wanted to know if they could come see us in St. Louis for the weekend! Scott and Karla were in our travel group when we went to China. We met our first day in Beijing and it was like being with friends we'd known forever! I was so happy that we would get to see them again! They drove in today and we all went to lunch and hung out by the pool. It was so much fun to see Scott, Karla and Mia again and meet their other children, Brett, Josh and Becca. Later, we ordered in pizza and played one of our favorite games, Apples to Apples. It was so nice to have some friends to hang out with! Thank you, Gulkes! You made our weekend!

Hanging out at the pool-Becca, Isabel, Josh, Noah, Brett, and Parker


Brett with his arms full!

Parker being tossed by Brett and Paul

Isabel with Mia

Hair bows, courtesy of the Gulkes- styling by Parker!

Feeling better at the zoo!

Prairie Dogs,

Anteaters,

and Monkeys, oh my!

....And Claire preparing to hide from the animals!

We were able to get Claire into an urgent care facility first thing this morning and get her on stronger antibiotics. She is feeling much better this evening!

Since the weather was nice again and we knew that the zoo was free, we decided to stroll around it with the kids this afternoon. Claire still wasn't quite herself but she loves to stroll. She does not love animals though, so she would get very upset if I took her out of the stroller for a better look and cover her face with her blanket when she saw any animals from the stroller! This girl has real issues with animals! However, we found that she did like to look at the penguins and puffins! The exhibit was indoors and freezing cold but she let Paul get her out of the stroller to look at them!

The penguins that Claire loves...okay, tolerates!

By-the-way, the St. Louis zoo is very nice...lots of beautiful plants and flowers, nice exhibits and a variety of animals! The kids have never seen kangaroos, wallabies, takins, sun bears, or prairie dogs! They really enjoyed the new animals.

This is the Giant Sugar Daddy that the kids found at Cracker Barrel. We do not usually buy the kids candy or junk food, but when we are on vacation we will occasionally and I could not resist this treat! I just think it is hilarious!

Back in St. Louis

After a day on the road, we are back in St. Louis. Claire did well on the ride considering that she probably has a urinary tract infection. Our urologist from Charleston wants us to take her to an urgent care facility to have a urine dip and get a stronger antibiotic than the one she is already on. We did not get to St. Louis in time to get her to one before they closed tonight so she will go first thing in the morning. On the bright side, her temperature climaxed at 103.4 this afternoon and has not been up past 100 since. Her urine is also clearing up a little. Maybe the Septra she is on is doing some good.

She gets so mad about not being able to pull up in the crib that she refuses to lay down and goes to sleep like this!

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.

Casting call in St. Louis!

We left for St. Louis, Missouri on Saturday afternoon (late of course) and made it as far as Knoxville before we had to stop for dinner and bed. Sunday found us "On the road again"! We made it into St. Louis... and back out, as our hotel was on the other side, by 10PM central time. Thank goodness for Paul's Marriott and Hilton rewards from business travel. We have not paid for a room yet!

We were up-and-at-um bright and early this morning so we could have Claire at Shriner's Hospital by 7:30 this morning. The hospital is no where near where we were staying but the traffic was not bad at all. We checked in, got weighted and measured and sent on our way to x-ray and patient photography. They x-rayed her feet and then they took pictures of them. Claire cried the minute they took her shoes off so we had to hide them for the rest of the morning. If see doesn't see them then she is fine not having them on!

This is the last time you will see me walk like this!

After the nurse saw us, then a physician's assistant did a once over and a Dr. from Thailand that is doing a fellowship did an exam. By that time, Claire was perfectly used to people looking at her feet and was happy to show them off! Finally, Dr. Dobbs came in. He informed us that, while Claire's right foot is club, or talipes equinovarus, her left foot is actually the opposite of club. Her left foot is what is called vertical talus. This is a little more unusual and many doctors are not experienced in treating this. But, guess who has treated numerous cases of vertical talus and has developed a technique for using the non-surgical Ponseti method to correct it! Yes, Dr. Dobbs! I knew we were in the right place!

See my foot!

The treatment of vertical talus traditionally consisted of manipulation and application of casts followed by extensive soft-tissue releases. However, this treatment is often followed by severe stiffness of the foot and other complications. Dr. Dobbs will use the principles of the Ponseti Method for long leg casting, followed by pinning of the talonavicular joint and a tenotomy of the Achilles tendon with her last of about 5 casts staying on for 6 to 8 weeks. Claire's other foot will be treated with the Ponseti manipulation and casting method and will take 4 to 5 castings and then an Achilles tenotomy will be performed on it. When all this is over, she will be fitted for a brace that she will wear at night for the next 2-3 years.

After our consult, Dr. Dobbs put her first casts on today! Hot pink of course! She was less than thrilled with the whole process but did much better than the toddler in the next bed that got casted right after us! Dr. Dobbs was everything we hoped and heard he would be! He is very intelligent, patient and so kind!

Dr. Dobbs at work!

When we finished up at Shriner's, we drove downtown and went to the Gateway Arch. It was a lovely day, not hot at all with a nice breeze. Claire had taken a little nap in the car and was good to go so we went under the arch to the museum and then went into the arch and up to the top! Now the kids are enjoying a dip in the pool and Claire is passed out on my bed. I feel bad for her, but in the end she will be so much better off! On the up side of things, she can only have sponge baths for the next few months and since Claire hates the bath tub that will make her day!

Note the hot pink casts!

HAPPY BIRTHDAY TO YOU!

Lovin' that cake!

HAPPY BIRTHDAY TO YOU! HAPPY 1ST BIRTHDAY CASEY MORGAN PRINCE! HAPPY BIRTHDAY TO YOU! We love you, Wild Thing!

Miss Chelsea, Mr. Paul, Parker, Noah, Isabel and Claire

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!

Over the river and through the woods...

A little time with Lizzie

To Grandmother's house we go! We just got back from a weekend of visiting. We grabbed Lizzie on Friday morning, on our way past Columbia and went on to my parent's house where Claire got to spend a day bonding with her big sister and visiting with Aunts, Uncles and cousins! We celebrated my baby sister's birthday and went to a birthday party for Miss Casey Prince, my best friend's baby and Claire's new buddy! Claire did so much better with all these people now that she is more comfortable with us! She played on the floor, let people hold her and "talked" to everybody! The change in her from one month ago is really neat to see!

Snuggle time with Uncle Charles

Isabel and Aunt Jennifer

I got Uncle Mark wrapped around my finger already!

Here we go!

We knew when we adopted Claire that her extensive medical needs would mean a frenzy of activity, especially at the beginning. Now that we have our first month behind us we are embarking on the next part of the journey for Claire.

As most of you know, Claire was born with spina bifida and club feet. The next few months will be spent accessing these defects and deciding what can be done to help her overcome them. We began today with an MRI to determine if she has any level of hydrocephalus. Hydrocephalus is sometimes called "water on the brain". It is a condition that occurs when cerebrospinal fluid builds up in the cavities of the brain. Cerebrospinal fluid is continuously circulating around the brain and the spinal cord and is drained into the circulatory system. When a blockage of the drainage occurs, the pressure inside the skull can damage the brain. Claire is at risk for this because she was born with spina bifida and 90% of people with spina bifida, also have some degree of hydrocephalus. The doctors in China did not diagnosis Claire with this condition, however, they also did not CT her head. Therefore, we felt it prudent to address the possibility as soon as possible to give her the best chance at a recovery if any damage has been done.

Getting ready for the MRI

Wednesday, Claire will have an appointment with the International Adoption Clinic for a comprehensive exam and developmental evaluation. This appointment will help us determine what services and therapies she might benefit from. They will also do blood tests to find out what Claire is already immune to so we will know which of the vaccines she has already had succeeded and which vaccines she needs to have now!


On Thursday we will head to see the neurosurgeon. He will have had time to get the results of Claire's MRI and will be ready to let us know his diagnosis. If she does have hydrocephalus, it is our understanding that she will be scheduled for placement of a shunt. A shunt is a device that will pump the excess fluid out of her brain cavities and into her abdomen. Obviously, we are hopeful that Claire will not need this procedure and just happens to be in the small 10% of people that do not have hydrocephalus. However, having a shunt is a pretty minor thing. Children all over the country have them and go about their daily activities like any other child.


Well, this is just the beginning! From our Adoption Clinic appointment we will get a referal for the Spina Bifida Clinic. At the Spina Bifida Clinic we will get to see more developmental specialists, an orthopedist, a urologist and a neurologist.


Buckle up! This is going to be one busy summer! Please know that all the prayer coverage and support has been felt and appreciated. We would love it if all our family and friends would continue to keep Claire in their thoughts and prayers everyday. She is still adjusting to us, and now we have to subject her to poking and prodding! We are doing only what we feel is best for her and our prayers are that we will have the wisdom to know which doctors, which procedures, which therapies will benefit her most! We are truly amazed by her spirit and her abilities every single day and we know that with the right care she will be unstoppable!





Jesus looked at them and said, "With man this is impossible, but with God all things are possible." ~Matthew 19:26

Sweet Feet!

When we first realized that we had accepted a child that not only had spina bifida, but also club feet, I immediately began to search for information on correcting her feet. Of course, we weren't sure if she would ever walk regardless and correcting her feet would be a moot point. But just in case, I wanted to be prepared. Of course, once we got our hands on her, we realized fast that our girl is going to walk one day!

During my research I came across a non-surgical method for correction call the Ponseti Method. It was created by Dr. Ignacio Ponseti, a native of Spain, who has been practicing at the University of Iowa since 1944. His technique uses a series of casts, followed by a brace to correct club feet. Dr. Ponseti is still practicing at the ripe ole age of 94 and actually looked at emailed pictures of Claire's feet and let us know that she does, in fact, have club feet and they can be corrected using his method. I was also able to find out during my research that a few other doctors, who were trained by Dr. Ponseti, are very successful at treating older children and children with spina bifida. Unfortunately, the doctors here in Charleston are not so experienced in the Ponseti method or with correction of older children. Most children have their club feet corrected with a few months of life and therefore, Claire is considered an "older child" in terms of correcting her feet. We also know that surgical correction can cause muscle weakness and possibly pain later in life. Claire already has muscle weakness and we do not want to do anything that might prohibit her chances of walking! So, we applied to the Shriner's Hospital in St. Louis, Missouri to have Dr. Matthew Dobbs correct Claire's club feet. Dr. Dobbs is considered one of the top Ponseti doctors in the country, under Dr. Ponseti himself, so we feel very confident that he knows what he is doing. He also works at a hospital that specializes in treatment of children with spina bifida, so were pretty sure that issue is something he has dealt with too. Yes, that is a long drive from Charleston, SC. But it is one we are willing to make if it means that our Claire will get to walk one day!

We got word on Thursday that Claire was accepted! They actually wanted us to be there today but that was not a possibility so they gave us a second choice...June 23rd! So, this weekend we will drive to St. Louis for Claire's first casting! We will stay in the Midwest until the following week so we can have her 2nd casts put on and return to Charleston the first week in July. At that point, she will have at least 2 weeks before she goes back for another set of casts. We are very excited for Claire that this is going to happen so soon! She will be walking on straight feet before we know it! Feel free to join us on this journey too!