The Best Day!

On top of the wonderful weekend we had, a day that Claire has been looking forward to finally arrived.  Claire has wanted new shoes since we bought the boys some new ones back at the end of summer.  Unfortunately for Claire, Tar-zhay and Wally World do not carry shoes that you can cram the likes of an AFO into! And shoes that you can wear with AFOs?  Well those babies are not cheap.  So she had to wait until she outgrew her AFOs.  Which she did back in November.  Then she had to wait on her Mama to make her an appointment with Mr. Jim.  Mr. Jim is her orthotist. 

We saw Mr. Jim a few weeks ago and he casted her for her new AFOs.  Which, come with shoes!   Yesterday we went to pick them up. 

 

An old one and a new one.  See how much she's grown! 

Nasty ole worn out old shoes!

Brand spankin' new shoes with shoelaces, y'all!

Shoelaces were very exciting!

She may actually have a fetish. 

I'm just sayin'.

'Cause she is in love with these shoes!

And could not wait to get them one those tootsies!

Mr. Jim got her in them as fast as he could!

I asked Claire what she thought of them when she got down to walk. 

She said, "they are awesome!"

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!

A Godsend!

Dr. Dobbs is a Godsend, I tell you! That man is worth every mile we drive to get Claire here to the Shriner's Hospital in St. Louis to see him. He examined her this morning, complete with pictures and x-rays. She cried, of course. But, she got over it quickly. Her feet look terrific! Everything is as it should be. And, about her hips? NO SURGERY!!!!! He said he would absolutely not do any surgery on her hips now and probably not ever! Of course, she will need hip x-rays every year to follow her, but he really didn't see why she would ever need hip surgery! Praise God! He expressed the same thoughts that Mrs. Denise, our physical therapist, had...that you could take a perfectly mobile child and change everything by doing hip surgery. He said that she is a mylo child (meaning she has spina bifida), and that their hips are different. Period. You can not expect her hips to do what normal hips are going to do and if you try to make them "normal" with hip surgery, you can make them stiff and leave her unable to walk on her own! Can you imagine???? Thank God for Dr. Dobbs!

Oh, happy day! I just think, what if we didn't have internet? What if I'd never heard of Dr. Dobbs or the Ponseti method? What if Claire had had foot surgery and was about to have hip surgery? Would she end up in a wheel chair forever? Would she have ever walked? What if???

I just thank God so much for leading me in the direction we have gone with Claire. It has all been an answer to our prayers! Thank you to everyone that was kneeling with us! You have no idea what a relief it is to know that Dr. Dobbs doesn't think she needs hip surgery!

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!

Another day in the life..

of our Claire, and another trip to the hospital for more tests. This is the day she had her follow-up MRI for her neurosurgeon, Dr. G. She has not seen this doctor since June when he pronounced that she did not have hydrocephalus. Hydrocephalus, or "water on the brain" is common in children born with spina bifida, especially the type she has. So common, in fact that all Claire's doctors were certain that she had at least a mild case of it and shocked when her MRI proved them wrong! However, she did show that she had large ventricles, but ventricles that were draining well. Dr. G. ordered today's MRI back in June because he felt it would be prudent to check for any changes after a 6 month period. We do not have an appointment set up with the doctor and will not need to see him unless this MRI shows any negative changes. We have not seen any signs what-so-ever of hydrocephalus and don't expect to hear that there has been any change in her status. But, we would apprieciate any prayers that are sent up for Claire!

Though today's tests are just precautionary, she had to be sedated and that is never any fun for her! The good news is that she shouldn't have to have another MRI anytime soon if this one shows no change!! As a matter-of-fact, she will be released by the neurosurgeon and simply be followed by the spina bifida team, not to have to see him again unless there is a concern!

A new resource on the block!

An amazing group of women, namely, Stefanie over at Ni Hao Ya'll, Tonggu Momma at Our Little Tongginator, Rebecca from China Baby! and Aimee at Heart Smiles have labored in love to create a wonderful new resource for parents adopting or wanting to adopt special needs children from China! I share with those women a heart for China's countless Waiting Children and as you all know, our own sweet girl was one of them! Claire is truly a living miracle and gift from God that we would not have been able to receive without the Waiting Children program. I was excited to lend our information to this new website and I have already reaped the benefits of it, as I found a new resource for our family based on Claire's special need!



So please, if you have a special needs child, want a special needs child, think you could one day open your heart to the blessings that wait....check out this new site, No Hands But Ours! The site is designed to encourage parents, provide support and resources and get the word out about children that are still waiting. And, if you want to see anything added to it...your family story, a link to your blog or your favorite resource listed, you can let them know at nohandsbutours@gmail.com. The more the better!

Replacing fear with knowledge

Replacing doubt with assurance

Replacing isolation with community

Replacing defeat with hope

Role Play

We knew it was only a matter of time. Claire decided to cath one of her baby dolls today. She has all her supplies handy but she skipped the hand sanitizing! I hope the baby doesn't get a UTI! Yeah, I think it's going to be a few more years before she will be quite ready to do this on her own!

Step one: Fling the baby's dress over her face....because who wants to watch, right? Then remove the diaper.

Step two: Hand sanitizing-who needs it! Skip that step and go straight to "use a box of wipes to clean the baby's bottom!" The more, the better, right?

Step Three: Get your catheter and paper cup ready, (yes, I sometimes cath her into a paper cup because they are way cheaper than diapers, people!) and search for the little pee pee hole.......ummm, where is that thing?

Step Four: If you can't find it, improvise! Hey, and this baby isn't even crying, so it must be fine!

Step Five: All done.....except there is nothing in this cup, mom! At this point she asked for some water in the cup! Now she wants to go give the baby a bath!

Get a look at this.....

Claire had a follow up with her Orthopaedist on Tuesday. Dr. H did x-rays of her back and pelvis area and gave us the thumbs up! Praise God, Claire's spine looks straight right now and her hips look really good. It is common for spina bifida patients to get scoliosis and have hip issues so these are things that will be monitored as Claire grows. But, one of the things our dear Mrs. Denise noticed during physical therapy is that Claire does not straighten her knees completely. This is due to tightness of the hamstrings and the remedy.....

These lovely knee immobilizers! Now Claire has to sleep in her Dobbs brace and these contraptions!

Just the fact that there is still as smile on her sweet face after being put to bed this way should give you an idea about the fact that this chick is one tolerant girl! I noticed she had a little trouble settling down last night but not so much that she fussed or anything. She did not even attempt to take the immobilizers off until she had permission this morning.

Let me just say that between cathing, dressing, and fastening all her braces on, we are going no where in a hurry in the mornings.... and don't get me started on her bedtime routine! Actually, do let me get started because if I don't start at 8pm there is no way she is getting in bed on time! I wonder if there is a full body brace they'd like to put her in.......because we don't have enough Velcro in our lives right now! Count them people, that is 16 Velcro fasteners-3 on each foot and 5 on each leg! Add that to the Velcro on her AFOs and shoes.....I wish I'd invented that stuff! Genius!

For those of you interested...I looked it up. Yeah, I'm just that geeky...hey I am a teacher! The multi-million dollar industry of Velcro was the brain child of a Swiss mountaineer named George de Mestral. He discovered the hook and loop idea after getting burrs all over his clothes on a walk with his dog. He took a look at the burrs under a microscope and noticed the small hooks clinging to the loops of the fabric on his pants and the idea was born. Of course he was laughed at....but whose laughing now?! The name Velcro comes from a combination of the words velour and crochet. By-the-way, that stuff was patented back in 1955! Who knew!

Progress:

forward or onward movement......

Okay, this may not look like forward movement.

But it is!
She backs into it...sometimes you've got to go backward a little, before you can go forward!

Another definition of the word is "a royal journey marked by pomp and pageant",and so we would like our pomp and pageant now, because that was a ROYAL JOURNEY, a long time in coming, for our little princess!

These shoes were made for walking!

Much to her dismay, I got Claire up a little early this morning. Did I mention that this kid is NOT, I repeat, NOT a morning person! But, around 8:30 this morning, Mr. Jim, one of our orthotists (people that design, construct and fit her braces), pulled up to our door with Claire's new AFOs (ankle-foot orthosis-plastic brace) and sneakers! Now, that is service! This child has now had 24 medically related appointments of some kind, so I do not have to tell you how nice it was to have this COME TO US!

Claire wasn't sure this was a good thing when she saw her new AFO's but when Mr. Jim started putting them on, she decided to help! Maybe it's an "if you can't beat um, join um" attitude......or maybe she just likes to think she has some control! Then she was all smiles about her new sneakers! This kid takes after her Daddy! She wants to try on every pair in the stores...unfortunately, none of those fit, so to have an actual pair of shoes to wear just made her day! It may even have been worth getting up an hour early for!

Of course, they are so big to accommodate the AFOs that she acted like he put cement blocks......or clown shoes on her! She would stand and not move, but just look! Then she would smile at Mr. Jim....'cause I think she loved those shoes on her feet! About that time, Claire saw Mrs. Denise coming through the door..............with some kind of child torture device! At least that is the way she reacted to what she saw! Mrs. Denise had a small walker in her hands and a pair of toddler forearm crutches. Claire took one look and screamed "NO"! You never saw a kid move so fast to get into my arms! Good thing Mrs. Denise is used to kids reacting to her that way!!! Well, she is the mean lady that makes them do hard stuff.....and brings torture devices! Actually, she is great and we love her already....okay, Paul and I love her. Claire is still undecided....today, not so much!


Twenty minutes later and after several demonstrations from Isabel proving that the "torture chamber" really wouldn't hurt and..................................Claire still wasn't having it! So, we left her alone. She eventually crawled over to it.....and allowed me to stand her up in it......but as soon as she realized that we wanted her to "WALK" with it, she freaked out! Really, as soon as she realized that she was touching it was when she began to freak, never mind the walking part! That just added to her anxiety! Good grief!

This picture was snapped right as she stood up. If the photographer had gotten the picture in the next second, you would have seen her look up in horror and begin to scream "NO, NO, NO"......again! We decided not to push it.

She loved walking up and down between her bars with her new shoes! So, that's something. In the mean time, the walker is waiting until she's ready. It took four months to get her to go in a bath tub willingly, people! This could take a while!

Go on over...

Significant Source is having her weekly Prayer Meetin' and all are invited! You can click here or on the Prayer Meetin' button to the right. I'll be heading over soon, but before I go I'd like to update you on Claire. Yesterday we got to meet Claire's new best friend- Ms. Denise the physical therapist! I don't have any pictures to share....because I didn't want to scare the woman off already! She will have plenty of time to get to know us and to realize that we are a little absurd when it comes to photographing our little sugar plum. I think we may have more pictures of Claire in the four months that we have had her than we do of our other kids in their first 3 years of life! Part of that is because we have soooo many little photographers now!

Ms. Denise was very thorough in her evaluation and very hopeful about Claire's possibilities. She is planning to bring a walker for Claire next week so we can get her going! Claire very much wants to walk and run like the other children and I think her determination will take her places! Ms. Denise has already instructed us on some exercises that will benefit Claire and I can not wait to keep up with her headway. She has amazed so many with her quick progress and I have a feeling, this will be no different!