tag:blogger.com,1999:blog-52534253975923608362024-03-05T17:00:02.813-08:00giggle blessingsDarcihttp://www.blogger.com/profile/08869820304836429761noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-5253425397592360836.post-54618008090493429002012-02-25T05:40:00.001-08:002012-02-25T05:53:26.301-08:00New HorizonsOur first family trip to Baltimore started at 4am last Wednesday (February, 15 2012) morning. We woke up to get on the road very early so that we wouldn't be arriving in Baltimore too late. It's a 10 hour drive. Also, we wanted to stay ahead of a snow storm that would be right behind us all the way. When you drive from Michigan to Baltimore, MD you drive through Pennsylvania. If you haven't driven through PA before, you really <i>must</i>. It is such a gorgeous drive. I was "privileged" to drive that 5 hour portion of our trip. It was a little unnerving at times driving down mountains next to Semi-Trucks with signs telling you to take this curve at 50mph. However, every mountain peak gave beautiful views of new horizons. For a couple of these hours Brandon and Kilah slept peacefully while I gripped the wheel, shoulders tense, eyes squinted, focused on the road ahead. How telling. This tends to be the way I take on life. Sometimes when I get to the top of one of my life mountains I take a breath, look at the gorgeous view and I realize I have very tired shoulders. :)<br />
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We arrived at Sinai Hospital shortly after 5pm. We spent the evening becoming familiar with our surroundings. We used an Applebees gift card that was one of our Christmas presents and had a nice dinner. We stayed at The Hackerman-Patz House directly across from Sinai hospital. Hackerman-Patz (HP) is a house for patients and their friends/family of Rubin Institute. <br />
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If you're interested, here is a video about HP:<br />
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<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/6FA3KMH1Ihw?feature=player_embedded' frameborder='0'></iframe></div><br />
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Here is a virtual tour, if you would like to see more:<br />
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<a href="http://www.lifebridgehealth.org/Sinai/HackermanPatzVirtualTour.aspx">Virtual Tour</a><br />
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Kilah seemed right at home at HP. Her two favorite things were the chair and ottoman in our room and the shopping cart in the playroom. <br />
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</div><div class="separator" style="clear: both; text-align: center;">Introducing Oatmeal (the monkey). He was with us for the whole trip. He even had X-rays done at the same time as Kilah. He's such a brave little monkey.</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;">Oatmeal needed pigtail bows too.</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Our appointment to meet Dr. Standard was at 1pm and check out from HP was Noon so we had a little time to kill...</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvcIhkv7dGnj9ah1lHhF-FWot56HuMaJpkcuajsIk1Gjzv-cgEZ6U2D6AG9zDrWYiSLv6UZMCRwBVQRSdajzNlUQUfvqN0KRxMZgSWpsGUJiYUYdFaKehQQIEBXDl9Hyw1Qwgs-vII8Wc/s1600/IMG_1396.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvcIhkv7dGnj9ah1lHhF-FWot56HuMaJpkcuajsIk1Gjzv-cgEZ6U2D6AG9zDrWYiSLv6UZMCRwBVQRSdajzNlUQUfvqN0KRxMZgSWpsGUJiYUYdFaKehQQIEBXDl9Hyw1Qwgs-vII8Wc/s320/IMG_1396.JPG" width="320" /></a></div><br />
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</div><div class="separator" style="clear: both; text-align: center;">As you can see; Oatmeal was learning to use a camera.</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Our appointment with Dr. Standard went wonderfully. As all of his patients and their parents had told us when they recommended him, we LOVED him. He took care to spend as much time as we needed and answered all of our questions. He had a little different plan for Kilah's leg than the previous doctor. The best part of the visit was the way that Kilah enjoyed Dr. Standard. She was very comfortable with him and was feeding him pretend food (her favorite thing to do) throughout our appointment. He won her heart as he chomped at her fingers and said, "nom<span style="font-family: inherit;">, nom, n</span>om!" We have decided that we will be using Dr. Standard and <em style="background-color: white; font-family: arial, sans-serif; font-size: small; font-style: normal; font-weight: bold; line-height: 16px;">Rubin Institute for Advanced Orthopedics</em><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small; line-height: 16px;"> (</span><em style="background-color: white; font-family: arial, sans-serif; font-size: small; font-style: normal; font-weight: bold; line-height: 16px;">RIAO</em><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small; line-height: 16px;">).</span></div><div class="separator" style="clear: both; text-align: left;"><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small; line-height: 16px;"><br />
</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #222222;"><span style="line-height: 16px;"><span style="font-family: inherit;">After talking with Dr. Standard we now know that Kilah's Tibia is bowed slightly. This is common with FH kids. He explained that his normal procedure is to do bone straightening before attempting to lengthen bones. Also, she will gain a little length by straightening the bone. Dr. Standard also recommended the "Super Ankle" procedure for Kilah. This is basically correcting her ankle and putting it in the best position for limb lengthening. He advised that Kilah undergoes as many surgeries as are deemed necessary and beneficial before the age of 4 to prevent any social and psychological damage. He said long term memory isn't really developed until after 4. Developmentally, this is the best choice for Kilah. Surgery has been set for the first week in October. We will be staying at HP (we already have it booked). Kilah will have her tibia straightened and the "Super Ankle" procedure done. Both of these procedures require fixators, so this will be our warm-up/practice round for limb lengthening. If everything goes as planned, Kilah will have her first limb lengthening next fall. </span><span style="font-family: arial, sans-serif;"> </span></span></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #222222; font-family: arial, sans-serif; font-size: x-small;"><span style="line-height: 16px;"><br />
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</span></span></div>Darcihttp://www.blogger.com/profile/08869820304836429761noreply@blogger.com0tag:blogger.com,1999:blog-5253425397592360836.post-77532667394203389032012-01-24T06:18:00.000-08:002012-01-24T06:19:12.354-08:00Heart EncouragedThis will be a brief post to answer a common question and share an amazing video with you.<br />
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First, if you've been looking at photos and videos on my Facebook page lately you may have noticed that Kilah often wears a shoe on her shorter leg while wearing a slipper on her other leg. We have found that this gives her a little bit of a lift and helps stabilize her ankle. Also, when she stands still (which isn't often these days) she is more likely to stand flat footed. Most of the time she walks on her toes on her shorter leg so she is loosing flexibility quickly. Any flat footed time is good. Our trip to Baltimore is approaching quickly and we plan on talking to Dr. Standard about her shoe lift and AFO (brace). <br />
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Second, I'm so excited to share this video with you. Last night, when I watched it for time, it was so encouraging for my heart. Although I know that Kilah will be a stronger person because of the things she will experience in her life, it is so uplifting when you see a young person as a living example. It was nice reminder. My favorite part of this video is when Miranda says thanks for all of the good memories. I will make sure Kilah has good memories. :) Here is it. Watch and see for your self. <br />
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<div class="separator" style="clear: both; text-align: center;"><object class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="http://3.gvt0.com/vi/EEMS_aoqMic/0.jpg" height="266" width="320"><param name="movie" value="http://www.youtube.com/v/EEMS_aoqMic&fs=1&source=uds" /><param name="bgcolor" value="#FFFFFF" /><embed width="320" height="266" src="http://www.youtube.com/v/EEMS_aoqMic&fs=1&source=uds" type="application/x-shockwave-flash"></embed></object></div>Darcihttp://www.blogger.com/profile/08869820304836429761noreply@blogger.com0tag:blogger.com,1999:blog-5253425397592360836.post-77967295776208678092012-01-17T19:12:00.000-08:002012-01-17T19:19:18.338-08:00Road Trip!!Last Thursday Brandon and I were a part of a live chat with Dr. Standard from Rubin Institute for Advanced Orthopedics, Sinai Hospital of Baltimore. He was taking questions from people. Most people in the chat were those with children that have FH. It was very informative. Dr. Standard offered to do a free consultation with us and spent a lot of time answering all of our questions during the chat. During the chat there was plenty of friendly banter going on between Dr. Standard, his patients and his RN, Lee. Lee has been very helpful and attentive. She emails me back quickly and her responses are always lengthy and answer all of my questions. I really appreciate the service I have received so far from Dr. Standard and his staff. Today I called and scheduled an appointment for the middle of February. This trip is basically to get a second opinion and to see what we think of Dr. Standard and the facility.<i> </i><br />
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</i></div><div>On a side note, I was playing with my camera a couple days ago and snapped this picture:<br />
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</i></div></div><div>It looks like Maggie is going to remove Kilah's arm from her body. Hahaha! They really do play so nicely together and Maggie was in mid play bite. </div>Darcihttp://www.blogger.com/profile/08869820304836429761noreply@blogger.com0tag:blogger.com,1999:blog-5253425397592360836.post-24295500076718311382012-01-15T20:59:00.000-08:002012-01-15T20:59:26.184-08:00Twinkle Toes.I really just wanted to show that even if you don't have a fibula in one of your legs, you can still dance like a pro. Here are more of those "sillies and giggles" that I have been talking about. We love listening to Pandora. I think this day we were listening to the "Kim Walker" station.<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxmEKo7fi2X6Yg3sV5FBeIsfvxWwmaYDGg0lsBLRO9cVF8lgkTGRYI7AnLmqWGz2HFfoYH4itRCNcMCQNpOJA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">And here is an example of my future ballerina</div><div class="separator" style="clear: both; text-align: center;"><br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzslI6bcOqIrc8NNGklM-WWp-unQUg9kKW6UxawgQfOV6TiX55GYj3uTnPeq8m1PCorSkqFVUK8dAQ0czSD5g' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Kilah jamming with daddy. </div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;">These videos make my heart smile. The end. </div><div class="separator" style="clear: both; text-align: center;"><br />
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</div>Darcihttp://www.blogger.com/profile/08869820304836429761noreply@blogger.com0tag:blogger.com,1999:blog-5253425397592360836.post-30301874600217883362012-01-12T20:01:00.000-08:002012-01-12T20:01:35.526-08:00Refreshing comes after the storm.Well today was not without tears but today it wasn't me. Poor little Kilah fell while drinking her sippy cup. She has done it many times before but today was different. It was a little delayed but soon after the tears came ALOT of blood. It soon stopped along with the tears but here is the result...<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj6mV7s9VkKTr0T5XrKKbamkHqdgjGxYZtRJ_Y0WgOCTk_uplJt9sqUJFbnmoVA0TrEBnY1TzuRRdVJjrt8W6djyZ2FrTocAKSCI0zFJzQ-wGC8WM5EFnLR-VVLI-8z5EEPVaghijH2JM/s1600/IMG_0269.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj6mV7s9VkKTr0T5XrKKbamkHqdgjGxYZtRJ_Y0WgOCTk_uplJt9sqUJFbnmoVA0TrEBnY1TzuRRdVJjrt8W6djyZ2FrTocAKSCI0zFJzQ-wGC8WM5EFnLR-VVLI-8z5EEPVaghijH2JM/s320/IMG_0269.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Kilah's first fat lip. Just in case you didn't feel bad enough, here are a few more pictures. I couldn't choose just one. :)</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiD6grEQcwRfz40po9WCL3iYI85rtS6cRGa2Gk5CcWoC0tVfQOJagxZIg-_WMExs0gsOC-04Os01xvu5BMEJds_dggiyJXr35QdJ6UHp_ywoh-6MLm7JeS1uq9y8FGvhtmqhoB7cgPM7E/s1600/IMG_0265.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiD6grEQcwRfz40po9WCL3iYI85rtS6cRGa2Gk5CcWoC0tVfQOJagxZIg-_WMExs0gsOC-04Os01xvu5BMEJds_dggiyJXr35QdJ6UHp_ywoh-6MLm7JeS1uq9y8FGvhtmqhoB7cgPM7E/s320/IMG_0265.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL3HJel6UtqX5voJ3LqoFY4yfcLR6WaJK6fEgjmtIHhyEPSj7rAKf_cgOZU9zIsw9YR5HXv5SOES4bajRxmOja0jMBJWeiKFQ87AyJDQRX_EuVNqUiuDkWCRYGG_yFZUMGM55JBJrFb7w/s1600/IMG_0267.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL3HJel6UtqX5voJ3LqoFY4yfcLR6WaJK6fEgjmtIHhyEPSj7rAKf_cgOZU9zIsw9YR5HXv5SOES4bajRxmOja0jMBJWeiKFQ87AyJDQRX_EuVNqUiuDkWCRYGG_yFZUMGM55JBJrFb7w/s320/IMG_0267.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaSH-RrsAXJv_L9v3YfGfkiVy0bdbZ5k4EKPHnNI98RR0jXM6HztSxc8ALcnB_-ogHciiQZyDUqM4_6x3p-ySFrGmZuvj6zqKl9xVczeJD9bXYMjSe33zCIGKw8mbnQACNJ92mpUJwD2A/s1600/IMG_0268.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaSH-RrsAXJv_L9v3YfGfkiVy0bdbZ5k4EKPHnNI98RR0jXM6HztSxc8ALcnB_-ogHciiQZyDUqM4_6x3p-ySFrGmZuvj6zqKl9xVczeJD9bXYMjSe33zCIGKw8mbnQACNJ92mpUJwD2A/s320/IMG_0268.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;">I had to give her some Advil so she could sleep. She woke up and said, "oh, momma" and pointed at her lip. It was hard not to laugh at how pitiful she was but now she sleeps soundly (the advil must have helped).</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">I just left a live chat with a doctor in Baltimore at Sinai Hospital. His name is Dr. Standard. It was a chat designed to answer questions about Limb Length Discrepancies. It was very beneficial and I feel very blessed to have met more people with this commonality. I received lots of great information. In short, I think we will be doing a "road trip to Baltimore" soon. That's what I'm calling it. It sounds more fun an adventurous that way. heehee. I will keep you posted on any decisions we make. </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">I thought I would share a picture I snapped the other day. It really shows Kilah's current LLD pretty well.</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVKPEgwVUasgAVvAo1vm2ik65sCEdR5-o6c6NRzzibCrtvn-I6PO0_0MEkAJcuzj193cGnsX1DR3OZdVIt6JNdx16Pq6o_BKNk8H4qekXwuwKOuPN-zDuvb7yrHRufzDrxMzqqhjnnsno/s1600/IMG_0058.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVKPEgwVUasgAVvAo1vm2ik65sCEdR5-o6c6NRzzibCrtvn-I6PO0_0MEkAJcuzj193cGnsX1DR3OZdVIt6JNdx16Pq6o_BKNk8H4qekXwuwKOuPN-zDuvb7yrHRufzDrxMzqqhjnnsno/s320/IMG_0058.JPG" width="213" /></a></div><div class="separator" style="clear: both; text-align: left;"> </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">And in this photo she is standing flat footed:</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtsytDNDIqywY6qCqLlC6BflN7LBfSptr2_jLiBvyv2f7cIRiv33Rvnz8AZEA71h2hAEXtu0hMSM7ZbAa7c7l98gUHVg6VJBKefVHlTHqywqLURGePcObr_6rdItbXctgRQRlK3y_FMX4/s1600/IMG_0111.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtsytDNDIqywY6qCqLlC6BflN7LBfSptr2_jLiBvyv2f7cIRiv33Rvnz8AZEA71h2hAEXtu0hMSM7ZbAa7c7l98gUHVg6VJBKefVHlTHqywqLURGePcObr_6rdItbXctgRQRlK3y_FMX4/s320/IMG_0111.JPG" width="213" /></a></div><div class="separator" style="clear: both; text-align: left;"><br />
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</div>Darcihttp://www.blogger.com/profile/08869820304836429761noreply@blogger.com2tag:blogger.com,1999:blog-5253425397592360836.post-91914500993708901542012-01-11T12:33:00.000-08:002012-01-11T12:33:11.089-08:00Sometimes there are tears.Well it's not all giggles all the time. Sometimes there are tears. Yesterday I called my husband (THE best husband anyone could ask for, might I add) in tears after hanging up the phone with the company making Kilah's first AFO and shoe lift. I had no idea what to expect and was socked to hear that an AFO for my tiny little Kia's leg is nearly $1000!! Apparently we will be paying for that out of pocket because we haven't yet met our deductable. Money isn't something I usually let bother me but I about fell out of my chair when I heard that number. Once I had my bearings again I called back and told them I would not be purchasing the shoe lift from them. I have opted to have a local small business start making all of Kilah's shoe lifts because the price is about 80% less. I asked if my mom, who was already in the area could pick up her shoe. Later my mom called to explain that when she picked up the shoe, that it already had the lift on it! Strange. They had constructed it without my go ahead or payment. Anyway, after discussing it with the manager they decided to give it to me for free because it was their mistake. This lifted my spirits a little because it was over $100 for the lift alone. It was long day of phone calls and insurance issues. I spent some time reflecting on scripture and praying and felt much better about things when I went to bed (minus a killer tension migraine). <br />
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Today was a new day! I woke up refreshed, headache free and ready to attack the day. After a "lovely" teeth cleaning at the dentist, and with dinosaur cupcakes in tote, Kilah and I went to celebrate my nephew, Tristan's, 5th birthday. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinJKpLq5pO23EEEjxCoccvNsA4Rr-BoHC_10ZdN1bf9PcNbulSH-1rFHrjmlM7r3GdzIC6PpoSs9Sc-b3p16oF6jiXcp7_A_XGbxUegFvhIXF4hZm1BDrcDSKMXCKJqcapFcoVZjmBwac/s1600/IMG_0228.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinJKpLq5pO23EEEjxCoccvNsA4Rr-BoHC_10ZdN1bf9PcNbulSH-1rFHrjmlM7r3GdzIC6PpoSs9Sc-b3p16oF6jiXcp7_A_XGbxUegFvhIXF4hZm1BDrcDSKMXCKJqcapFcoVZjmBwac/s320/IMG_0228.JPG" width="320" /></a></div><br />
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When we arrived at my mom's house for the little birthday lunch/party. My mom gave me the "free" shoe lift. Right now I'm very angry. I'm very glad that I didn't pay anything for it and I'm pretty sure it's a good thing that my mom picked it up and not me. I'll post a picture. We are still waiting on AFO. Kilah can't wear the shoe lift without it. Her lift is too tall and if she looses her balance and falls she could break her ankle. Anyway, here we are a month later and still... no where. ugh. I will post a picture or two so that those of you who have dealt with shoe lifts can tell me what you think. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLMLA-NkshAfMcy3K3xWCSoO9DYdCyUaWqUbyFRYG_u_JbF0Iu1tJ6pqjr3ef44poNhQw0Yv-HyS805iytsU30sUtUhRMppsxEVEY9gqJMibQf-GkRu6aoJMwKH4rw9NLq7l8v8MT8nnQ/s1600/IMG_0234.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLMLA-NkshAfMcy3K3xWCSoO9DYdCyUaWqUbyFRYG_u_JbF0Iu1tJ6pqjr3ef44poNhQw0Yv-HyS805iytsU30sUtUhRMppsxEVEY9gqJMibQf-GkRu6aoJMwKH4rw9NLq7l8v8MT8nnQ/s320/IMG_0234.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgICd1lPj1t5qDuFZ9ArDBpHYW_UcKbvF-UcL6dFGj3JlftHjNH7MF7WfYPmvIUzni3qtT-86FFUJIhoa2K9-TUCgEn4g4IdntXUFPiu0fkP3dRqJC9nACmnz83ibFRM8qLDBtcQ9bA6kM/s1600/IMG_0235.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgICd1lPj1t5qDuFZ9ArDBpHYW_UcKbvF-UcL6dFGj3JlftHjNH7MF7WfYPmvIUzni3qtT-86FFUJIhoa2K9-TUCgEn4g4IdntXUFPiu0fkP3dRqJC9nACmnz83ibFRM8qLDBtcQ9bA6kM/s320/IMG_0235.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM-MJsA76xnF71mbY30HYItXnpzI06rY4KFIvyOSuX7-9rVbuew3xZoivVuZvyqqPsMLbwm26shiON65J1ACnDENQsB7p6OjqYcYM9H1wYgr7-z7sbeB5RNO3Wc-aMDyfMArdbQddoGGs/s1600/IMG_0231.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM-MJsA76xnF71mbY30HYItXnpzI06rY4KFIvyOSuX7-9rVbuew3xZoivVuZvyqqPsMLbwm26shiON65J1ACnDENQsB7p6OjqYcYM9H1wYgr7-z7sbeB5RNO3Wc-aMDyfMArdbQddoGGs/s320/IMG_0231.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Thanks for reading. Sometime's you just need to vent. :) I know God's got this. I'm not worried. I just don't like to be taken advantage of.</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div>Darcihttp://www.blogger.com/profile/08869820304836429761noreply@blogger.com8tag:blogger.com,1999:blog-5253425397592360836.post-36325050099631774602012-01-02T08:31:00.000-08:002012-01-02T08:40:30.357-08:00The Projection<span style="font-family: Arial, Helvetica, sans-serif; line-height: 18px;"><span style="background-color: white;">On April 15, 2011 (Kilah was 7 months old) we met Dr. Paley for the first time. Paley Advanced </span><span style="background-color: white;">Limb Lengthening Instiitute is at St. Mary's Medical Center in West Palm Beach, Florida. After more x-rays, we met Dr. Paley. They use special formulas to project what the Limb Length Discrepancy (LLD) will be when the person is fully grown. Kilah's projected LLD is 5.5 inches. Her Femur (the bone above the knee) makes up about 2/3s of her total LLD and her Tibia and Fibula (the bones below her knee) make up the rest of her LLD. Dr. Paley explained that Kilah would "only" need 2 surgeries. Her projected LLD is actually on the smaller side. So we use the word "only" because many other people undergo several surgeries to Lengthen their limbs. Also, many people with Fibular Hemimelia have hip or foot deformities that come along with the LLD. Kilah is very fortunate that she will only need Limb Lengthening and a minor procedure done on her ankle.</span></span><br />
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<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; line-height: 18px;">Recently we visited Dr. Paley for a second time on December 5, 2011. At this appointment he laid out a plan for Kilah's surgeries. She will have her first LL surgery at age 3 along with a procedure on her ankle to help the bone grow correctly. She will have her second LL surgery around age 8. At both of these surgeries they will be lengthening each part of her leg the full amount of the projected discrepancy. The first surgery her Tibia will be lengthened and with the second the Femur. Dr. Paley also wrote her a script for her first shoe lift (4cm) and an Articulated AFO. We just went last week to fill the prescriptions. We should be hearing back from them soon. I will update and post pictures once we get them and start using them. It should be <i>interesting.</i> :)</span><br />
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<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; line-height: 18px;">The latest prayer need we have is that Dr. Paley's office doesn't take our insurance. Brandon's company changed insurance providers between our 2 visits. When we went for our second visit we were told they don't take our insurance. Now we have some decisions to make. We are considering changing doctors, and we are working on a new budget that includes putting the maximum amount into Brandon's HSA each year. This condition is so rare (1 in 40,000) that there are very few doctors that do Limb Lengthening. We will have many expenses along the way because no matter what doctor we choose we will be doing a lot traveling. She will need to visit and get measured for a new shoe lift every 6 months, so we will have ongoing traveling expenses. Three months of daily Physical Therapy goes along side the Limb Lengthening process. This is an added expense as most insurance providers don't cover that much PT. Also, we will need long term lodging during this time. In short, there are many expenses involved but we trust and know that God will provide. We would like prayer for wisdom to make good decisions as we journey through this adventure.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; line-height: 18px;">Here is a short video for a little more info:</span><br />
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<a href="http://www.youtube.com/watch?feature=player_embedded&v=9E9HmTfLl7k">http://www.youtube.com/watch?feature=player_embedded&v=9E9HmTfLl7k</a> <br />
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</span></span></span>Darcihttp://www.blogger.com/profile/08869820304836429761noreply@blogger.com0tag:blogger.com,1999:blog-5253425397592360836.post-74489376588824281542011-12-13T10:01:00.000-08:002011-12-13T10:01:51.976-08:00Sillies and GigglesSillies and Giggles. That is the perfect description of my little Kilah. As reality of her diagnoses took hold, my heart was heavy. Having no disability myself, this was a whole new world to me. I spent a few days grieving this news. I did a lot of praying and searching God for answers. I reminded myself that this will be all she will ever know and will be the normal for her. I also thought about how I danced starting at age 3 until I was in my 20's. I always hoped my own daughter would have the same love for dance. Now I wondered if she would even be able to <em>try</em> dance? I wrestled with all of these thoughts and more while she, Kilah, reminded me everyday what life was <em>really</em> about. She was so full of sillies and giggles all the time that I had no choice but to laugh and join in the fun. I was falling in love with this little being more and more everyday and continue to still. <br />
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After the grief passed I began to have a new reality. The truth. The truth was that my daughter was completely healthy and wonderful and has a minor issue that can be corrected with surgery. There are so many who have lost children for any number of reasons. My new reality is to walk in my blessings and be thankful. The process to get my heart to this place only took a few days. I'm so thankful to the Lord for His faithfulness. He is always faithful to give me the wisdom I need for any situation that I face. We never know what life is going to throw at us but it's so great to have my Father God to cling to in every situation and the Holy Spirit's constant guidance. <br />
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I had one moment of pure joy and reassurance after reading this scripture: <br />
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"To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:7-10<br />
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Wow! Some scholars believe that the "thorn in my flesh" that Paul refers to here is possibly ongoing eye infections. Paul was dealing with health issues and prayed that God would take them away, God said, "My grace is sufficient for you, for my power is made perfect in weakness." I love this promise from the Lord. I know Kilah is going to be a beautiful, strong, confident woman of God one day because of this promise.<br />
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- Thanks for reading. I'm slowing posting our whole story. My next post will be about our trip to see Dr. Paley.Darcihttp://www.blogger.com/profile/08869820304836429761noreply@blogger.com0tag:blogger.com,1999:blog-5253425397592360836.post-66345277759369410662011-12-12T20:53:00.000-08:002011-12-22T15:19:48.751-08:001 in 50,000<table class="posts" id="posts"><tbody>
<tr class="last selected"><td class="title" onclick="setSelected(this, "642822640420825923");"><div class="postContents"><div class="entirePost">God gave us Kilah Jane on September 1, 2010. Our lives were changed that day forever. We were parents for the first time. For us that became reality as soon as we saw her beautiful face. Truly a beauty with red hair, blue eyes and fair skin she melted our hearts at first glance. 9 months of nausea, and nearly 4 days of induced back labor was quickly forgotten. We had a little hiccup the next day when Kilah's pediatrician came to see her for the first time. He did all of the normal inspections and when he checked her legs he noticed that her right leg was a very small amount shorter than her left leg. She was a perfectly healthy, beautiful baby girl except for a small Limb Length Discrepancy (LLD). Her Pediatrician told us it probably wasn't anything to worry about. He said that most people have up to a 1/2 inch difference and that she was probably one of those people. However, her pediatrician is very thorough and decided to send us to an Orthopedic Specialist to check it out and be sure. The specialist was Dr. Burton, a very nice, very old Orthopedic Surgeon in Flint, MI. He really was wonderful and took a lot of time with us. The first time we saw Dr. Burton, Kilah was only 2 or 3 months old. Dr. Burton also thought that Kilah's LLD was minimal and wouldn't be any problem for her.He predicted she would need a small shoe lift to make walking more comfortable once she was an adult. However, also being a thorough doctor, Dr. Burton asked us to come back to see him again in a few months. We made an appointment for around age 6 months and went on our merry way. As those few months passed we started to notice that her LLD was growing larger. We especially noticed it when she happily bounced in her jumperoo. Her right leg definitely wasn't growing as quickly as her left leg. There she would jump, unaware of the worries of the world. </div><div class="entirePost"><br />
When Kilah was 6 months old we went to Dr. Burton again. After more x-rays, Dr. Burton decided we should see a Pediatric Orthopedic Specialist. On April 7, 2011 Kilah was diagnosed with Fibular Hemimelia (FH). We went to see Dr. Settecerri and more X-rays were done and it was a very quick diagnoses of FH. With the right angle on the x-rays anyone who knew what they were looking for could easily see that Kilah only had part of a Fibula in her right leg. Dr. Setterri also took a lot of time with us to make sure we understood everything and that all of our questions were answered. He explained that Kilah was a special case of FH. He said that in many cases of FH the person may not have all of their toes or may have other more severe deformities. Kilah, however, has a perfectly normal foot and all of her toes. Then he said the "A" word. Amputation. I remember my heart sank and I fought tears. My little 6 month old baby was asleep in her grandmother's arms in the chair next to me and he was suggesting that we cut off one of her tiny little legs at the knee. It was horrifying to think about in that moment. He explained that many doctors suggest the "A" word because it's quick and easy fix. Then he said that there was another option. "What?! Another option?! Oh!!! Praise the Lord!," was all I could think. Dr. S began to explain that there was a Limb Lengthening procedure that could be done, however, it was very painful and could involve multiple surgeries as a child. We would have to find an even more specialized doctor to treat her. If we chose amputation Dr. S said he would do the surgery for us but if we wanted to look into Limb Lengthening (LL) he wished us the best. Dr. S said that it would be very hard to amputate a perfect leg like Kilah's. After hearing him say that I felt convinced we needed to look into LL to see what it was all about. Dr. S gave us a few names and locations that do LL for us to research, so that was where we started looking. It quickly became clear that a Dr. Paley was a pioneer and one of the (if not THE) best in the world in Limb Lengthening surgeries.</div><div class="entirePost"></div><div class="entirePost">Dr. Paley's Institute is located in West Palm Beach Florida. Since we already had a family vacation booked to go to FL before we had the diagnoses, I crossed my fingers and called Dr. Paley's office to see if they could fit us in during our vacation. I plead my case and was so thankful to get a call back with an available appointment time. Praise the Lord!! </div><div class="entirePost"></div><div class="entirePost"></div></div></td><td class="type"></td><td class="type"><div class="softAlert"></div></td><td class="date"></td><td class="author" nowrap=""></td><td class="link"><div class="deleteLink"><strong><span style="color: #3366cc;"></span></strong></div></td></tr>
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