New Brace and AFOs

We did a "power trip" (there and back in a day) to St. Louis last week to pick up Amelia's new brace and AFOs. Steve went with me so I had someone to share the driving with~it made the drive much easier! We're already seeing a difference in Amelia's ability to stand~she'll even stand unprompted! We can't really see a big difference with the nighttime brace other than she can't really untie them. They are hook and loop tape so we are waiting to see if she tries to undo them. Hopefully she'll be walking without any help before long. We are also going to start physical therapy next month.

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Mother's Day 2008

This was my first Mother's Day with Amelia. I always think of the girls birth mother on this day. It makes me sad and glad all at the same time. It's difficult to describe all the emotions surrounding this day for me. No psycho-babble today....check out the family blog for a slide show of some pictures of the day!

Battle of the Brace~sleeping~CONTROL....

We've been experiencing "sleep issues" again. The past week, Amelia has decided to wake up in the middle of the night/morning and begin her "Mommy" call. Yes, she chants..."Mommy! Mommy! Mommmmmyyyyy!" Over and over and over again. If I do not respond in what she believes to be a "timely fashion", the screaming begins! And I do mean screaming! I had thought we were over the hump~ HA!!! I even went so far as to vocalize that we were getting along so well lately. I guess she showed me. Which is what so much of Amelia's behavior is about~Control!!!

Markell shoes on a Denis Brown Bar

Which brings me to my next topic....the dreaded brace that she wears 14-16 hours a day. It's a wonderful contraption~unlace, loosen bucket, force chubby foot in, wench down buckle, re-lace and wah-lah, you are finished. Can you hear the sarcasm???? Steve HATES this thing~he actually breaks into a sweat when he tries to put them on Amelia. I have sort of mastered it and can whip through it rather quickly.

Nice screw....wrecking havoc on my hardwood flooring....How does a little girl get that off after I wench it on. Do I need lock tite???

Amelia doesn't fight us on the brace. Well, not really~she uses a more passive aggressive way to fight us. She will bang the shoe/brace against the floor, mattress or whatever to loosen the massive screws on the bottom and then she takes the shoe off the brace. Imagine my surprise when I check her before I go to bed and find her shoes unscrewed!?!? It's very irritating.

I'm also a huge stickler on her wearing the brace 14+ hours. Honestly, she should probably be wearing them around 16 hours. We usually get 12 hours at night and then 2 hours at nap time. So I've been extending the time in the morning and right after nap time. It's been working out o.k.~but it means that I have to put the brace on her at around 7:30 p.m. since she is an early riser. Not such an easy task since summer is almost here and it's daylight until 9 p.m. So now the brace has been going on later at night which translates into wearing it later in the morning. Do you see wear I'm going with this???? Needless to say, we are in another transition phase that hasn't been much fun.

The new Dobb's brace is in and we will be getting it fitted this week. Amelia will also be wearing AFOs during the day and hopefully it will assist her with walking. If you do go to the link to check out the brace, know that there is some controversy about the bar and this video. If you know anything about braces and braces, the second brace is clearly too small for this little girl which will cause her to be uncomfortable. Amelia can crawl like a champ with this bar and she can stand quite well.

There is also another site you can check out . This is a family with three children~all born with club feet. She is a tremendous resource for families that are dealing with club feet. The biggest difference for us is that Amelia did not have the benefit of treatments during infancy, which is what US born babies get. Amelia was living with her feet for 16 months before any treatments. So the protocol is slightly different~like wearing AFOs during the day. Many people would say that this is not appropriate procedure. But since Amelia has nerve and tendon damage~her case is different. On and on I could go about the different perspectives.

So we are moving forward with the brace and AFO until we have the tendon surgery in the fall.

Earthquake in China

I'm sure many, if not most of you, have seen the international headlines about the earthquake in China. Amelia is from Sichuan Province, Chengdu, to be exact. The epicenter was about 60 miles from Chengdu. Half the Sky is the US agency that provides programs for the children many orphanges around China. Amelia's orphanage happens to be one that benefits from the work of this great organization. HTS has been sending daily updates to anyone on their mailing list. This is the latest update that I have received....

Dear Friends,
I dearly wish I had more good news to report. The very best thing I can tell you is that we have not had a single report of injuries from the welfare institutions.

As of this morning (Friday) there were 19,509 people confirmed dead. The State Council today said there will likely be more than 50,000. Today’s government report describes one terrible scene after another: thousands homeless, thousands missing, thousands injured, thousands trapped or buried alive. Hope for survivors is dimming. There is an urgent call for body bags to prevent the spread of disease. There have been over 4,400 aftershocks.

HTS Director, Child Development, Ma Lang has arrived in Chengdu and sends this note:I am deeply touched by your moral and emotional support. I only slept twoof the past thirty hours. The first thing I did after landing was todonate some medicine to the Chengdu Red Cross. It was very much appreciated – exactly what was needed. They gave me a wish list for further donations: antibiotics for children and adults, medicine for diarrhea, cold capsules (not instant medicines that must be mixed in water), bandages, gauze, tape, iodine, cotton swabs, herbal medicine to stop bleeding and some for pain relief. Other much-needed donations include tents, tarpaulins, warm clothes and shoes. People in Chengdu are doing everything they can to help with the earthquake rescue. I saw all sorts of vehicles carrying things to the donation centers. I registered for blood donation and was put on the waiting list – the blood center was overloaded with donated blood and it’s difficult to transport the blood to the hardest-hit areas. More to come… Lang

Here is the confirmed information we have regarding welfare institutions:The following institutions not mentioned in yesterday’s note suffered no serious damage:Chengdu 2nd SWI, Chengdu 3rd SWI, Ziyang SWI, Neijing CWI, Chengdu SOS children’s village, Leshan SWI, Ganzi CWI, Guang’an SWI, Suining SWI.

The following report damage, but, again, no injuries. Your generous donations will help meet all of these requests for assistance:

Bazhon CWI – Severe damage to building; children are fine. Meishan SWI – Cracks in buildings, have evacuated all children (50+) to tents. They have adequate food, water and clothes but request 20 cribs and bedding. Guangyuan SWI – Damaged buildings, all children have been in tents for 4-5days, often in the blazing sun. They request food, baby formula water, diapers, bedding and other daily necessities. They urgently need drugs and food supplements to protect against disease and heatstroke.

Nanchong SWI – There was substantial damage to buildings, all children (100+, more than half under 6 years-old) are living in tents. They need more tents, disposable diapers, children’s clothing, wagons, cribs and bedding.

Deyang CWI – Dormitory for school-age children was severely damaged. Although the other buildings seem fine, pending inspection, all children and staff have been moved to tents. There has been constant rain and much that was pulled from the buildings has been ruined. They request bedding and children’s clothing. They still have disposable diapers left from our assistance during the winter storms but will be running out of those as well as infant formula in the coming days.

Mianyang Zitong CWI (update) – Children have been moved back from the military base to a safe building in the institution. There is adequate food and water but they request clothes, bedding, infant formula, diapers and medicine for colds. They are now caring for 66 children, 23 of them under 2 years.

Sadly, 24 new orphans – earthquake survivors - arrived at the institution yesterday. We are still unable to reach these orphanages: Abazhou CWI (52 children) and Mianzhu SWI. Please give what you can to help the children who survive go on with their lives.If you would like to donate to Half the Sky’s Children’s Earthquake Fund,it would be great if you would do so at Global Giving.

My apologies forgiving incorrect information yesterday; the Ford Motor Company is generously matching EMPLOYEE gifts to Global Giving, not ALL! Still, it is an easy and convenient way to make a donation and helps HTS by handling processing of your gifts. Now maybe some other corporation would like to step up and match ALL donations?!http://www.globalgiving.com/pr/2100/proj2086a.html

If you prefer to donate directly to Half the Sky, of course that’s fine.Here are the various ways: You can donate by calling Half the Sky (+1 510525 3377) or on our website:http://give.halfthesky.org/prostores/servlet/Categories?category=Children's+Earthquake+FundIf you would like a Canadian tax receipt, please donate athttp://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s86248If you would like a Hong Kong tax receipt, please call us at +852 25205266 or online athttps://www.paydollar.com/b2c2/eng/charity/payInfo.jsp?charityId=4947Thank you for your tremendous support. Although it is heartbreaking towrite these reports, we are so honored to be in a position to help duringthis terrible time.

with love,Jenny
Jenny Bowen
Executive Director
Half the Sky Foundation
www.halfthesky.org

Half the Sky was created in order to enrich the lives and enhance the prospects for orphaned children in China. We establish and operate infant nurture and preschool programs, provide personalized learning for older children and establish loving permanent family care and guidance for children with disabilities. It is our goal to ensure that every orphaned child has a caring adult in her life and a chance at a bright future.

It really is a horrible situation. So many people in such a small area can only mean that injuries and the death count will continue to climb. Join me as we pray for everyone's health and safety in China.

Another trip to St. Louis, another unexpected outcome

We just returned from another trip to see Dr. Dobbs in St. Louis and to say that my expectations were not met is an understatement. I've spent the last 24 or so hours processing what happened and I think I might be able to put everything that happened in to words. So here it goes.

Thankfully, we had an uneventful trip, arrived in the early evening before rush hour traffic, checked in and headed to dinner. We ate al fresco which was really nice for the girls. They could get out and run a little bit and after riding for 5.5 hours, they both needed to move around.

Dessert was Klondike bars in our room. I promised Elise a sundae but service was so terrible at the restaurant that we opted for something from the hotel convenience store over waiting and waiting and waiting for our waitress to return. I wouldn't say the Klondike bars were a success, but it appeased their desire for ice cream.

Naturally, I slept horrible. Lucky for me that Elise chose to sleep with Aunt Candy (he he!) and I had a bed to myself. I think I woke up every hour because I was so fearful of missing our 7:30 a.m. appointment. That would be a total nightmare, having to reschedule! Wow, I can't even go there!

We arrived in plenty of time and we were the second patients in the waiting room. The other family was a Chinese woman and caucausian man. They were very curious about Amelia in a sweet way. Amelia was more than willing to entertain them. It was a pleasant conversation~at least for me it was.

When we were called back to the exam room a Chinese doctor arrived to ask us some questions. Well, let me say that he hasn't been in the US long~I had a very difficult time understanding him and I caught myself almost looking at Amelia and asking her what he said. Yes, I know, politically incorrect~but I was struggling. You know how you have to really focus on the person talking, look them right in the face and run what they just said through your brain about 3 times before you can finally process enough of the words to form an answer? That's what I'm talking about!!!!

He looks at Amelia's feet, looks at her legs, has her stand etc. Then he orders an x-ray of her spine. As shocked as I was to hear this, I wasn't totally surprised. I had asked the doctors when we arrived home if she had a sacreal dimple~but she does not and her spine is fine. The head nurse was very attentive while Amelia walked down the hall to x-ray. I mentioned it to her and she said that she had never seen a gait like Amelia's before. Hmmmm....not sure what that means.

Finally Dr. Dobbs showed up and informed me that due to the abnormalities that were discovered in the EMG/nerve conduction study, he recommended that Amelia have the tendon transfer (Anterior Tibial Tendon Transfer (needed in 20% of club foot cases) - where the tendon is moved from the first ray (toe) to the third ray in order to release the inward traction on the foot) now and not wait until she is 3+ years old. Since the nerves and tendons are damaged, her foot will continue to return to the "turned-in" position even after being corrected with serial castings. I knew that she would probably need the surgery eventually, just not now.

My head is spinning and he continues to tell me that she would still need 2 sets of castings to stretch the foot and tendon to prepare her for the surgery. Each cast would be on 1-2 weeks depending on how often I wanted to return to St. Louis. Then the surgery would take place on an out patient basis. He assured me it's very minor surgery. She would be in and out within an hour. She would then be put into long leg casts for 4 weeks and after that, she would be put into short leg casts for 2 weeks.

Mentally, I'm calculating the number of weeks this process is going to take and I'm up to 8-10 weeks. We have been kicking around a family beach vacation this year. Matt will be leaving in the fall for college and we figure it's our only opportunity to go as a family of six. But Steve has said he won't take Amelia to the beach in casts since she won't be able to enjoy the water etc. and neither will we. My beach vacation is fading before my very eyes. The thought bubble holding all of this information has formed and ~POP~ it explodes. All those thoughts become words and start to spew right out of my mouth. Dr. Dobbs then tells me that we can wait to start the process this fall without any problems for Amelia. I think about spending 10-12 weeks inside my house with two toddlers, not being able to go to the pool. Only going outside if it's not too hot so Amelia won't sweat too much in the casts and for me~it's a no brainer! We're waiting! Destin, here we come!!!!!!!! Sorry, another thought bubble just exploded.

We did get Amelia casted for a new night time brace and her AFOs. I'm working on getting things shipped to me so I don't have to return to St. Louis. I calculated that for us to drive there, spend the night and eat, it costs around $500! Yep, not kidding! So hopefully we won't have to return for the AFOs and brace.

I can't say that I'm disappointed with the outcome of the visit. Just surprised and adjusting to a new direction. Seems we are constantly doing that with Amelia. But hopefully she can start wearing the AFOs and it will make her legs stronger and she will start walking. Then maybe, just maybe, she won't need the serial castings and can go into the tendon transfer. This would cut down the number of trips to St. Louis, etc. etc. etc.

That' it for now~but you never know what might change next....

Almost walking....

This week, I have watched Amelia stand and balance for well over ten seconds. It's been so exciting to see the sheer delight and surprise on her face when she realizes what is actually happening. She will even take a step, but then falls down. Consequently, I don't count it as walking yet. But the standing is a very good thing! She's still pretty unsteady and you can tell she's really struggling to keep her balance. If you look at the next set of photos, you'll understand better what some of her challenges are ;-)

She likes the step stool

See how her feet are not flat....try not to notice the "budda" belly :-)

Our next doctor's visit will address this problem.

Look at that face. She is so shocked, but excited!

Trying to take a step....

She does a great job catching herself

I'm sure she will be back in casts next week. I'm also pretty sure that she is going to be less than pleased. We covet your prayers during this time....for ALL of us!