tag:blogger.com,1999:blog-44890866627712709222024-03-04T23:36:35.941-05:00Elsie's Left LegOur Journey with Proximal Femoral Focal Deficiency (PFFD)Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-4489086662771270922.post-76345196136170885502012-05-13T00:51:00.002-04:002012-05-14T15:50:17.597-04:00Treatment PlanOur visit to Baltimore and the Ruben Institute of Advanced Orthapedics (RIAO) was great.<br />
First of all the drives were pretty uneventful and Elsie did so great in the car! Plus I thoroughly enjoyed driving through the Appalachians. Gorgeous! <br />
<br />
When we got to RIAO it was a beautiful sunny day.... I took this as a sign of what would follow :) <br />
<br />
We arrived at 1010 for our 1100 appointment. By 1050 we had been checked in, gotten X-rays and talked to a fellow. Not bad considering we were told we may have a few hour wait!! By 1130 Dr. Standard came in with Lee (a nurse who I've been emailing and does the chats) and with the fellow, Fredrico. We talked a lot... Great discussion. We're really comfortable with the RIAO staff and Dr. Standard. <br />
<br />
Summary of Dr. standard's diagnosis: <br />
Current leg difference: 7.5 cm <br />
Projected Leg difference in adulthood: 24cm give or take <br />
Description of her severity "mild to moderate" <br />
Evaluation of other parts of her leg (ankle, knee, foot): Appears to have good joints. Many cases are not as fortunate, though no promises that knee surgery won't ever be needed (or any other for that matter)<br />
<br />
Here is a summary of our treatment plan: <br />
15-18 months: Superhip Surgery This is like a salad bar surgery... Meaning there are about 15 possible things he could have to correct, Elsie may need 1 or up to 15. One thing we know she'll need is the femoral head to be straightened. This procedure will likely add 2cm to her left leg. <br />
<br />
3-4 years: First lengthening. This will use an external fixator during the recovery. We will have 14 weeks of potentially staying in Baltimore for physical therapy and follow-up visits with Dr. Standard. If we decide to try and do physical therapy at home, we would only stay between 2-6 weeks in Baltimore and then come home. We'd then have to visit every two weeks through week 14. After week 14 we'd most likely return home and send periodic X-rays to Dr. standard until he calls the lengthening complete. At that time we'd return to RIAO once again and have the fixation removed. This procedure could add about 7 cm. This will be the most trying and challenging portion of Elsie's treatment. After hip and first lengthening, Els' legs will be pretty close to even, however as she grows, the difference will grow as well. Nice to think though that for a little while the difference won't be too noticeable - a glimpse into the overall success. <br />
<br />
8-10 years: Second lengthening. This lengthening would use an internal lengthening device. No external fixation this time. This technology is something Dr. Standard developed (with others). We'd have physical therapy, time in Baltimore and of course recovery. however, not as intense as the first time. Again this could add 7 cm 10 years or so: remove a growth plate in her right keg. This is an option if we wanted to reduce the amount of lengthening needed in her left leg. Not sure what we'll decide, but this could eventually make up for 5 cm of the difference. Overall, this move would reduce Elsie's full-grown height by 2" which isn't a big deal coming from parents who are 5'10" and 6'2". <br />
<br />
13-15 years: Final lengthening!!! Same as the second. This is where we'd make up the final difference. Girls' legs are generally done growing about 14, so we will do Elsie's surgery when she is done. This lengthening will depend on if we shorten right leg and the success of others. <br />
So that's our going forward plan!!! We go back to RIAO to have a check-up and to plan/schedule her hip surgery in about 6-8 months. I'll update on other parts of our visit soon. :)Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com3tag:blogger.com,1999:blog-4489086662771270922.post-49640728371402980792012-05-07T23:03:00.001-04:002012-05-07T23:03:15.124-04:00Recent Visit with Dr. Nowicki<div class="MsoNormal">
<span style="font-size: large;">Aghh! Where has the
time gone? Over a month without an
update and I have so much to share!</span></div>
<div class="MsoNormal">
<span style="font-size: large;">On Wednesday, April 25 we visited with Dr. Nowicki here in
Kalamazoo. We had some x-rays done of
her knee and hip. Good news…. Dr.
Nowicki was very pleased with the results.
Based on what he saw, he definitely thinks that our best option will be
limb lengthening. What a relief, I just
hope that Dr. Standard and Dr. Herzenberg can confirm. I know limb lengthening will be a trying
process, but I feel so blessed that we have a clear front-runner, that it isn’t
a ‘six to one, half dozen to another’ scenario…. where Matt and I are forced to
choose what’s best. </span></div>
<div class="MsoNormal">
<span style="font-size: large;">So, you’re asking what was it that made Dr. Nowicki
pleased? First of all, he was pleased
with her movement of the leg, and to hear that she is bending and rotating it
well without signs of pain… (reminder, early on any movement in her leg was
obviously painful – leading to her wearing a harness) Also, the x-rays showed what appeared to be
the femur being held into place, even though we couldn’t see a femoral head. A certain gap in the hips, along with her
movement, lead him to believe that there is a femoral head present, but we just
can’t see it on the x-rays (whether it hasn’t ossified or it may be
turned). This is great news because
often PFFD children are missing their femoral head. On top of that, Dr. Nowicki thought her hips
looked great and said that hip reconstruction may not be needed! Though not definite, I take any good news we
can get <span style="font-family: Wingdings; mso-ascii-font-family: "Times New Roman"; mso-char-type: symbol; mso-hansi-font-family: "Times New Roman"; mso-symbol-font-family: Wingdings;">J</span> </span></div>
<div class="MsoNormal">
<span style="font-size: large;">Soon I’ll add a few shots of her x-rays from 4/25/2012…. 6.5
months old.</span></div>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-55717971682118896822012-05-07T23:02:00.001-04:002012-05-07T23:02:26.527-04:00Trip to Baltimore!!!!<br />
<div class="MsoNormal">
<span style="font-size: large;">Here it is Monday night and we leave Wednesday morning for
Baltimore! I CANNOT believe it! We are so close to the appointment. What am I feeling?</span></div>
<div class="MsoNormal">
<span style="font-size: large;">Overwhelmed – so much to do, in so little time! </span></div>
<div class="MsoNormal">
<span style="font-size: large;">Nervous – Baby and 10+ hour car ride (and that’s if we
didn’t stop or hit any construction). Oh
yea, I get car sick too. Plus I know
I’ll be a ball of nerves leaving my oldest behind… which brings us to the next
emotion.</span></div>
<div class="MsoNormal">
<span style="font-size: large;">Sad – I do not, I repeat DO NOT want to leave my 2 year old
Mimi. I don’t think she’ll understand us
leaving her but taking Elsie. Plus, I’ll
just plain miss her. </span></div>
<div class="MsoNormal">
<span style="font-size: large;">But, most of all I am EXCITED! – I am excited to meet Dr. S,
Dr. H, Lee a nurse and the rest of the RIAO team. I know we’ll soon spend lots of time here, so
I’m looking forward to essentially acquainting myself to a large part of our
future. Wednesday is the first step into
a major life event, so how could this not be exciting. I’m very optimistic – I
know God will take care of Elsie and I truly believe that RIAO is where we’re
supposed to go! </span></div>
<div class="MsoNormal">
<span style="font-size: large;">Expectant – Let it be known, I have high expectations of
this trip. Up through now, we have very
little answers on plans for the future, just a list of possibilities. However, I am confident that with Dr. H and
Dr. S’s experience, they will be able to give us a fairly accurate picture of
what Elsie will be facing in the next 14-16 years. </span></div>
<div class="MsoNormal">
<span style="font-size: large;">Finally, I’ve never been to Maryland, so it’ll be fun to
visit a new place even if expedited! </span></div>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-17047001162162332772012-05-07T23:01:00.002-04:002012-05-07T23:01:43.443-04:00Multiplier Q&A<br />
<div class="MsoNormal">
<span style="font-size: large;">I participated in the most recent chat with Dr. Standard and
Dr. Herzenberg on April 26. Last time I
participated they suggested we download the multiplier app for our iPad. As I discussed earlier, we did this and it
predicted a 12.4” discrepancy in adulthood.
</span></div>
<div class="MsoNormal">
<span style="font-size: large;">I know my measurements aren’t official since it doesn’t take
into account bowing of the bone, nor am I an official measurer. However, I still wanted to see what the Drs
thought of this.</span></div>
<div class="MsoNormal">
<span style="font-size: large;">So, I shared these results with Dr. S and Dr. H on 4/26 and
they said, even if that were accurate, they could probably perform surgery and
correct that severe of a discrepancy!
YAY <span style="font-family: Wingdings; mso-ascii-font-family: "Times New Roman"; mso-char-type: symbol; mso-hansi-font-family: "Times New Roman"; mso-symbol-font-family: Wingdings;">J</span></span></div>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-24237319440941447102012-03-26T22:31:00.000-04:002012-03-26T22:31:09.501-04:00Multiplier Prediction<span style="font-size: large;">There is an application available for my iPad called "Multiplier". It's icon is below:</span><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4j5ST1ay5hiZLjCOd6ISxSNPn4SBxsyR-scKMMRF56r2PBRw40Lyv7_bOCBJRLwqUpDL_N7pkrwM2K678mXmf6E2yUuRt9uWtaPNt3SJswQKMgJ7xBcHQ70UMEqGhGGQG3vaerPGI4hOa/s1600/multiplier.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img aea="true" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4j5ST1ay5hiZLjCOd6ISxSNPn4SBxsyR-scKMMRF56r2PBRw40Lyv7_bOCBJRLwqUpDL_N7pkrwM2K678mXmf6E2yUuRt9uWtaPNt3SJswQKMgJ7xBcHQ70UMEqGhGGQG3vaerPGI4hOa/s1600/multiplier.bmp" /></span></a></div><span style="font-size: large;">During the monthly LLD chat that Dr. Herzenberg and Dr. Standard host, they mentioned this app as a tool that can predict the limb discrepency in adult hood, based on a child's current stats. So, I figured if they're supportive of it, I would give it a try.</span><br />
<br />
<span style="font-size: large;">I had to select Femur, Female, input Elsie's DOB and the current discrepency (8cm). This spit out a calculation of 12.4 inch discrepency at full growth. Matt and I obviously aren't expert measurers, and we aren't trusting Elsie's future to an iPad app. However, it's the first prediction we've got. Unfortunately, it is a steep difference. Within the next few months Dr. Nowicki and Dr. Standard should be able to give us more percise predictions, as well as what the implications of such predictions are. It is a neat tool though.</span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com4tag:blogger.com,1999:blog-4489086662771270922.post-53089606844295774152012-03-24T19:42:00.002-04:002012-03-26T22:25:27.315-04:00Change of Doctors<span style="font-size: large;">Originally, we wanted to see Dr. Paley and shared our brief communication with him. However, since then we did finally make the decision to switch to Dr. Stanard and Dr. Herzenberg of RIAO in Baltimore. We're seeizng Dr. Standard on May 10th and I'm very excited!</span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com1tag:blogger.com,1999:blog-4489086662771270922.post-77248951620845215012012-02-23T20:43:00.003-05:002012-02-27T12:35:15.053-05:00Tough Choices<span style="font-size: large;">25 Months ago today I became a Mommy. Ever since I've been making choices.... how long to breastfeed, when to start feeding food, what type of childcare we wanted, when to have another baby.... the list goes on. Some of these choices were easy, even fun to make. Others were given greater consideration prior to actually having my answer. It's part of my role as a parent. I've been given my children's future as the greatest responsibility. Of course I knew I'd be making choices on their behalf. But nothing could really prepare me for the choice I'll soon be forced to make - how to treat Elsie's PFFD. </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">Lately I've been obsessing about what decision we will make. Limb lengthening, rotationplasty, amputation...something else? I don't know the risks and benefits of each to truly make an informed decision, but within the last week I can't think of anything else. I am thinking about it 24/7. </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">It all started from last week's chat when Dr. Herzenberg said Elsie's leg looks to be on the severe side of PFFD. He mentioned a total of 7 surgeries. Initially I was relieved he thought he could do surgeries. That's what I've been hoping to hear. BUT then my wheels have been going since then. If Elsie had surgery to reconstruct her hip at 2 and then 6 surgeries for limb lengthening..... what would her childhood be like? I'm guessing that the 6 surgeries is comprised of 3 to put on a fixator and 3 to take it off. If that's the case, I've seen in multiple sources that a fixator is on for 8 months for each lengthening. If Elsie has 3 lengthening surgeries, that's a total of 24 months in a fixator. 24 months of cleaning the needles everyday, 24 months of possible complications leading to chronic pain. If this was the path we chose, would Elsie get a fun, carefree childhood? Also, I'm starting to wonder what the increased risk is that's associated with greater discrepency. Will there be a chance that we could go through these surgeries and her leg be shorter still? If lengthened to meet the right leg eventually, how strong and functional will her left leg be? We are making a list of all of the concerns we have so that come June we can ask Dr. Paley. </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">Aside from the Physical concerns that Elsie may face, I'm wodnering how in the world we'd make it happen? We live and work in Michigan. To have so many surgeries and recovery in MD or FL we'd have to take off a significant amount of work. Not to mention the finances associated with living in a hotel or short-term apartment each time. The worst part to think about? If I'm in FL or MD for 4 months at a time, where would Mila be? I can't stand the thought of dragging her away from home, but even more so I can't stand the thought of her not being with me. But then I think of the fact that part of those 4 months are bound to intersect with the school year...how could she stay with me. My only logical answer to this is to MOVE. Seems far fetched I know, but it's the only way I feel like we could stay together as a family, keep the girls in school as well as Matt and I being able to keep our jobs. </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">So, needless to say, the Limb Lengthening is exhausting to think of. Are the benefits worth the physical toll it could take on Elsie? </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">On the flip side, I recently connected with a family whose little girl had her leg amputated at 9 months due to PFFD. Her mother graciously has been open with me on their experiences and with photos. Her daughter learned to walk with her prosthetic leg, her daughter had a single surgery and may never have another surgery again, her prosthetic is all that she knows (and as Mom says "she loves it!"). This beautiful little girl is seemingly able to enjoy her childhood just like others her age. The prosthetic is functional and isn't noticable visually unless you're looking for it/know it's there. This mom told me that they've never looked back. So in April we see Dr. Nowicki again. I want to find out more about our non limb lengthening options and the associated risks. </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">Hopefully come June after seeing Dr. Nowicki and Dr. Paley, we'll have a good idea of our options and the risks/benefits of each. Matt is trying to wait to think about it until we have all the knowledge... I wish I could. </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">I pray alot about Elsie. I want to make the right decision, I want a miracle in her leg, I want to know what God's plan for her is. Right now my heart and head are pulling me towards amputation. Seeing the little girl with the prosthetic calmed me. I saw what I want to see in my daughter.... a little girl loving life. A little girl in her home, with her family....every day. But I can't help but wonder, am I REALLY leaning this way because I think it'll have the greatest results or because it'll be the easiest option? It is obviously easier to not travel and go through all the surgeries. But deep in my heart I'm feeling this is (with my current knowledge) the best. If it comes down to it and we have an amputation.... will 18-year old Elsie understand the decision? Will she wish we would have tried something else? What would she have done differently? These same questions would apply even in the event of Limb Lengthening. Would Elsie be regretful of all the time she spent in the hospital? The time away from home? The pain associated with the needles? Was it worth the years and years of physical sacrifice in the end? And that's the worst part - no path is the easy one. There isn't a right and a wrong. And it's a decision I don't want to make - but at the same time, I trust no one else to make it for Elsie. She's my precious little girl and no one cares for her like I do.... and no one would put the time and consideration into choosing like I will.</span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com2tag:blogger.com,1999:blog-4489086662771270922.post-25152854808456025512012-02-18T22:58:00.001-05:002012-02-18T22:59:33.542-05:00Chat with Dr. Herzenberg<span style="font-size: large;">Through PFFD.org I was introduced to a monthly chat that is offered to parents of children with limb lengthening needs. It allows us to ask Drs who host questions and they give us their thoughts. <a href="http://www.lifebridgehealth.org/RIAO/AboutDrJohnEHerzenberg.aspx" target="_blank">Dr. Herzenberg</a> and <a href="http://www.lifebridgehealth.org/RIAO/AboutDrShawnCStandard.aspx" target="_blank">Dr. Standard</a> are both Ortho surgeons, like Dr. Paley, also among the World's finest. They are the co-founders of the International Center for Limb Lengthening at Sinai Hospital in Baltimore, MD. </span><br />
<br />
<span style="font-size: large;">I attended my first session on Feb. 16 and was pleased to see how accessible the Drs are. I was able to talk to Dr. Herzenberg when it was my turn to ask questions. I sent him a picture of Elsie's Xray. Unfortunately, he was in agreement with Dr. Nowicki that Elsie's discrepency was on the severe side for PFFD. Of course this is without a physical examination, but it was a hard blow for me to take. I guess I've been holding out hope that her case wouldn't seem severe to someone who deals with limb lengthening on a daily basis. </span><br />
<br />
<span style="font-size: large;">There was good parts though... Dr. Herzenberg mentioned that even though most Doctors would recommend amputation, he believes they could operate (estimated total of 7 surgeries - that's disappointing!) and also, he was asking about if Elsie keeps her knee bent or if she can straighten in. When I said she straightens it, he said that's a good sign. So that made me happy. </span><br />
<br />
<span style="font-size: large;">Even though we're going to see Dr. Paley in June, I would like to keep our minds open to working with Dr. Herzberg or Standard. I keep thinking of how personable Dr. Herzberg seemed via the chat. Also, I like the thought that monthly I could communicate with him in an open chat Q&A without an official appointment. Finally, others in the online community that I've been fortunate enough to learn from have had great experiences with him. As an added benefit, MD is much closer to home than FL. </span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-59249211475908091612012-02-15T20:05:00.001-05:002012-02-17T22:59:58.414-05:00Shots in the Short Leg<span style="font-size: large;">We do get the immunizations according to the schedule suggested for children. The last two well baby check-ups for Elsie (at 2 months and 4 months), she has had to get 3 shots total. From everything we've heard, the leg with PFFD is completely fine to accept the shots. Elsie's pediatrician and I decided each time that we'd give her up to two shots in her right leg (normal) and if needed, the third in her left leg (short). </span><br />
<br />
<span style="font-size: large;">The first round of shots in December went well. Our pediatrician made a point to grab the most experienced nurse to give Elsie her shot in the left leg. She wanted to make sure someone with experience could find the best mass of muscle (and would have the experience to know to do this!). Of course she cried and immediately wanted to nurse. However, that was the extent of our recovery. After a few minutes Elsie was back to normal. </span><br />
<br />
<span style="font-size: large;">This past Friday (Feb 10) we had the 4 month shots. Again it was three shots, so two were going in the right and one in the left. I didn't ask for the most experienced nurse, but will be sure to in the future. A really young girl came in to help with the shots. I don't even know if she was aware of Elsie's short leg. Again, this is something I will make sure to bring attention to in the next round of immunizations. However, I trusted the process since it went so well last time. Little E again cried and wanted to nurse. We did that and as I went to dress her again I noticed the shot seemed to be right ON her knee. I was mad, but like my husband said, we can't change it now. It's there. Looking back, I wish I would have said something and remembered the name of who gave the shot (so I could avoid her.... although facially, I'll probably recognize her)</span><br />
<br />
<span style="font-size: large;">About 2 hours after Els' shots she became extremely upset and unconsolable. She basically scream cried for a few hours in a row, with only a short nap to break it up. She didn't want to nurse, she didn't want Mommy to sit.... I just had to hold her and bounce, bounce, bounce with her on my chest, her head on my shoulder. This may sound typical to any baby who is upset, but I assure you she is NEVER upset like this. She truly has the most happy disposition of any child/person I've ever met. So I was nervous to say the least. I took her tiny pants off and her entire thigh was red and swollen. Luckily, the paperwork we were given said this is a known side effect (something like 1 in 6 children react in such a way). Even though it is known to happen, I am convinced it was because of the placement of the shot. Neither my older daughter Mila nor Elsie have ever reacted such a way to shots, just this one with poor placement. I felt terrible. Thankfully no long term harm, just a very uncomfortable baby. </span><br />
<br />
<span style="font-size: large;">Why am I doing this? 85% is to complain and vent (I've been getting more mad each day) and 15% is just to encourage other parents to speak up if you want to. That's what I've learned from this. I will next time make sure I ask for a more experienced nurse and and I will for sure inform, or remind, them of Elsie's leg. I'll ask them to make sure they take time to find the best mass of muscle and perhaps even share with them about the poke to the knee. </span><br />
<br />
<span style="font-size: large;">Thanks for listening! </span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9fRais2IhPIXedebzKunki5f9laGxOu79u-3oFXjcM4kX_YRBz7QG4SAQntDLZLhXyQKCwx46Qe632vWEyaqzVvRGeSkmwfnzSaeZ4FaTXtbMoQO3TcY39yZQaEWGgJ7FChzqkq0nVD5c/s1600/shot+location.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9fRais2IhPIXedebzKunki5f9laGxOu79u-3oFXjcM4kX_YRBz7QG4SAQntDLZLhXyQKCwx46Qe632vWEyaqzVvRGeSkmwfnzSaeZ4FaTXtbMoQO3TcY39yZQaEWGgJ7FChzqkq0nVD5c/s320/shot+location.jpg" width="214" yda="true" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hard to see, this is 5 days later showing the poke. I wish I had a picture of what it looked like swollen, but I didn't want to put her through the torture of a photo shoot then. It's obviously much closer to knee than in the thigh muscle.</td></tr>
</tbody></table>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com1tag:blogger.com,1999:blog-4489086662771270922.post-50233643726204900282012-02-03T20:46:00.000-05:002012-02-03T20:46:09.344-05:00Developing<span style="font-size: large;">When Elsie was born the Doctors told us that she would develop as any other baby. The PFFD doesn't link to other physical delays or disabilities. This makes sense, plus, Elsie doesn't know any different - her leg has always been this way. Though we heard this, it is comforting and great to see her developing just as Big Sister Mila did. Below are some recent pictures of what I call the Happiest Baby Ever. </span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO1wk1L3EqP5k8qSd-ZI_1E8qLf28nAqbvv571I9OVpkd15j6DrVswCQcNAJ2s6lrlMBmwq8ANHgz_7_r_Xb7d-aE_PgMsCB8f7sTOxZ5xjXPeLENBsRhOLO4ke71Uji4is2-QZ4VckWtp/s1600/DSC_1140.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: large;"><img border="0" height="320" sda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO1wk1L3EqP5k8qSd-ZI_1E8qLf28nAqbvv571I9OVpkd15j6DrVswCQcNAJ2s6lrlMBmwq8ANHgz_7_r_Xb7d-aE_PgMsCB8f7sTOxZ5xjXPeLENBsRhOLO4ke71Uji4is2-QZ4VckWtp/s320/DSC_1140.JPG" width="214" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Trying to Roll - She gets soooo close. Anyday now!</span></td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhsE-56uPu5Re_M4QwAn_EudriPjc0AAGI7HxBfqFqMZQSHza1wArMostK_z9UFIYZMXT_P16_XfnPOPx9ZmAS_lDhUdtJM_L2mLsuO3Cxz4lQw2RmB2bVZ2szw3oIDudBYmqMOgG1Mhqa/s1600/DSC_0959.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: large;"><img border="0" height="214" sda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhsE-56uPu5Re_M4QwAn_EudriPjc0AAGI7HxBfqFqMZQSHza1wArMostK_z9UFIYZMXT_P16_XfnPOPx9ZmAS_lDhUdtJM_L2mLsuO3Cxz4lQw2RmB2bVZ2szw3oIDudBYmqMOgG1Mhqa/s320/DSC_0959.JPG" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Strong Core (even better now, but hard to capture in a pic)</span></td></tr>
</tbody></table><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhtl5VzEFNL8vsmvoFUMBIKP77kBaj7MZIy0qhIRBEPioKMLjs0-BVc34ZBSLSvyyLQgW_0-cjFIHv4jcFum8CkQKuy7kI21aNqVSX4BK-ugMb_pODypFvEjBDzLdYjysdiW2lby2-QQbE/s1600/DSC_1237.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: large;"><img border="0" height="214" sda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhtl5VzEFNL8vsmvoFUMBIKP77kBaj7MZIy0qhIRBEPioKMLjs0-BVc34ZBSLSvyyLQgW_0-cjFIHv4jcFum8CkQKuy7kI21aNqVSX4BK-ugMb_pODypFvEjBDzLdYjysdiW2lby2-QQbE/s320/DSC_1237.JPG" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Happy, Strong Girl </span></td></tr>
</tbody></table><span style="font-size: large;">I hesitate to share this, but I am simply because other Moms (or parents/guardians) could be thinking the same thing with their child. Since Elsie's PFFD was such a surprise, a very small part of me use to worry we will have something else pop-up that we aren't expecting. I hate that this crossed my mind, but it did - and on a rare occasion, still does. Everything Elsie does is normal, just like any other baby. And the older she gets, and the more she develops, the less it crosses my mind. Many days, I don't even think of her leg or the condition - she's just E. :)</span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-47840656820401480122012-01-17T21:12:00.003-05:002012-02-20T12:50:32.071-05:00Going to See Dr. Paley<span style="font-size: large;"></span><span style="color: black; font-size: large;">Dr. Dror Paley is the world renowned limb lengthening surgeon, and the man we hope can help Elsie.</span><br />
<span style="font-size: large;"><br />
<span style="color: black;"></span></span><br />
<span style="color: black; font-size: large;">Initially, our plan was to see him once we knew if/when she'd be a candidate to begin limb lengthening surgeries. Even Dr. Nowicki has talked about Dr. Paley and his abilities. Recently, my husband and I have been talking about going to see him as early as possible to ensure we have the best advice right off the bat. So, while on Dr. Paley's </span><a href="http://lengthening.us/index.html" target="_blank"><span style="color: black; font-size: large;">website</span></a><span style="color: black; font-size: large;"> I noticed his email address listed on the contact page. I emailed him and here was our communication over a two day period. Each time I emailed him he got back with me within hours! </span><br />
<span style="color: black;"><br />
</span><br />
<span style="color: black; font-size: large;">*********************************************************</span><br />
<span style="color: black; font-size: large;">From: Jackie <br />
Date: Thu, 22 Dec 2011 11:38:44 -0500<br />
To: Dror Paley </span><br />
<span style="color: black; font-size: large;">Subject: Daughter Born with PFFD</span><br />
<span style="color: black;"><br />
</span><br />
<span style="color: black; font-size: large;">Hi Dr. Paley-<br />
I have been browsing your website and truly hope we get the opportunity to meet with and work with you someday. My daughter has unilateral PFFD and is 10.5 weeks old. We're currently seeing an Ortho Pediatric Surgeon in Kalamazoo, MI. When should we engage your office as to her condition, if working with you is our hope and goal?<br />
If you're interested, I've added some pictures and an xray on a personal blog I started about our journey with PFFD. It's www.elsiesleftleg.blogspot.com<br />
Thanks for your time-<br />
Jackie</span><br />
<span style="color: black;"><br />
</span><br />
<span style="color: black; font-size: large;">*********************************************************<br />
She is at a good age for you to come out for your first evaluation. I generally like to see them by around 12 months of age. <br />
Dror Paley, MD, FRCSC</span><br />
<span style="color: black; font-size: large;">St. Mary’s Hospital</span><br />
<span style="color: black; font-size: large;">*********************************************************<br />
Thank you Dr. Paley-<br />
</span><br />
<span style="color: black; font-size: large;">We will work with your office to visit prior to her 1st Birthday. I'm guessing it would be most beneficial to visit after an MRI, so that you can review it as part of your initial evaluation? Would you suggest this?<br />
<br />
Thanks-<br />
<br />
Jackie</span><br />
<span style="color: black; font-size: large;">*********************************************************</span><br />
<span style="color: black; font-size: large;">I prefer to get the first MRI at 18-24 months. For now just come in for an evaluation and new xrays that we will get on site. </span><br />
<span style="color: black;"><br />
</span><br />
<span style="color: black; font-size: large;">Dror Paley, MD, FRCSC</span><br />
<span style="color: black;"><span style="font-size: large;">St. Mary’s Hospital</span></span><br />
<span style="color: black;"><span style="font-size: large;">*********************************************************</span></span><br />
<span style="color: black; font-size: large;">So we are no longer getting an MRI as early as we thought! This thrills me because I won't have to put Elsie under anasthesia as young. Also, if it's under his direction, I completely trust it! So it's set; we've set up our first appointment to go to Dr. Paley's in the beginning of June! YAY. Plus, who wouldn't look forward to a trip to West Palm Beach, FL. <br />
<br />
Just to be clear - We REALLY like and trust our pediatric ortho doctor here (Dr. Nowicki). However, we just want to make sure we do all that we can, as early as we can for our Little E. </span><br />
<span style="color: black;"><br />
</span><br />
<span style="font-size: large;"><span style="color: black;">You can also find Dr. Paley on </span><a href="http://www.facebook.com/#!/pages/Paley-Advanced-Limb-Lengthening-Institute/99341804421" target="_blank"><span style="color: black;">facebook</span></a><span style="color: black;">. <--------- click there!!</span></span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com1tag:blogger.com,1999:blog-4489086662771270922.post-13253793754620428592012-01-17T20:43:00.000-05:002012-01-17T20:43:45.162-05:00Life without the Harness<span style="font-size: large;">So, I'm a bit behind on updates. Elsie has been out of her harness for 3 entire weeks as of today! What a blessing. I remember with my oldest daughter, Mila, baths, changing clothes and even changing diapers seemed inconvenient. However, after 10 weeks in a harness and doing the same tasks - they are much easier without the harness and no longer seem inconvenient. </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">I saw on<span style="color: black;"> </span></span><a href="http://pffd.org/"><span style="color: black; font-size: large;">pffd.org</span></a><span style="font-size: large;"> that another mom's child was in a harness. She too could understand the desire to have a squishy baby 24-7. Let me tell you, it's been a great blessing to have her back to normal! </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">Since taking her out of the harness we haven't seen any signs of pain. It is evident that whether dysplasia or fracture or <em>whatever</em>, the harness did the trick! </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">Here is a picture of Elsie the last time she wore the harness! How cute :)</span><br />
<span style="font-size: large;"><br />
</span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6ltZfC79o0QoAHYzC4gA8_iWMGIwRBZjNMkAuozKbiCJOclG8Zj2DiHHDDI5DDRjdI6viLiKwgqSqf_WN2FWvJVic8bnS6uhyphenhyphenlR-JLLrioQaW1jm4exdmS3jn2J964dfOVNZFE76gHzWO/s1600/DSC_0566.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: large;"><img border="0" height="320" kba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6ltZfC79o0QoAHYzC4gA8_iWMGIwRBZjNMkAuozKbiCJOclG8Zj2DiHHDDI5DDRjdI6viLiKwgqSqf_WN2FWvJVic8bnS6uhyphenhyphenlR-JLLrioQaW1jm4exdmS3jn2J964dfOVNZFE76gHzWO/s320/DSC_0566.JPG" width="214" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">It was a good time to go because Little E was about to outgrow it!</span></td></tr>
</tbody></table><span style="font-size: large;">The only difficulty we faced from losing the harness was Elsie was use to sleeping in it for 10 of her 11 week life. The straps kept her legs in the air (as shown above) the entire night. So the first week without the harness Elsie had a hard time staying asleep. She expected her legs to levitate :) But we've worked through that and sleep is back to normal. </span><br />
<br />
<span style="font-size: large;">Needless to say, we haven't missed the harness!</span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-73942128698312304112011-12-21T20:52:00.001-05:002012-02-20T12:47:37.511-05:00Early X-Ray<span style="font-size: large;">My Husband and I decided that we would ask for copies of all ultrasounds/x-rays/reports...anything with information on PFFD and Elsie's leg. We are 10.5 weeks into PFFD (how old Elsie is) and I finally picked up the image from her first xray when she was not even 24hrs old. Below is the picture. I've also quoted the Dr.'s notes on the x-ray report.</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidUgBxPdW4IJuHUam2Frzb8gC35iPoYmBf2u456qWXO7PEQ55S1I1huNbWevlw7OOCX-vtcBWOMQVX_dKHI5Qq62CtP55RjcfKVImPHrmOHgj8Kr8CaxVYtITmc9EPTzFpI0B2AHe5xuSf/s1600/elsies+xray101111.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="223" rea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidUgBxPdW4IJuHUam2Frzb8gC35iPoYmBf2u456qWXO7PEQ55S1I1huNbWevlw7OOCX-vtcBWOMQVX_dKHI5Qq62CtP55RjcfKVImPHrmOHgj8Kr8CaxVYtITmc9EPTzFpI0B2AHe5xuSf/s320/elsies+xray101111.jpg" width="320" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: large;"></span></div><span style="font-size: large;"> Here is what's in the report:</span><br />
<br />
<span style="font-size: large;">"FINDINGS:<br />
BONES: Images are limited due to the less than optimal positioning. There is asymetric widening of the left hip with deformity of the proximal left femur which may be developmental subtle lucency about the proximal left femur with slight angulation no gross callus formation but this may represent a fracture.</span><br />
<br />
<span style="font-size: large;"> CONCLUSION: Asymmetric widening of the left hip, lateral dislocation with developmental deformity of the proximal left femur there is a relative angulation and a subtle lucency possible fracture, age indeterminate. Right hip appears more normal but this may also be slightly widened. The pelvis appears to be well developed. Clinical correlation and progress studies recommended."</span><br />
<br />
<span style="font-size: large;">We will share the Ultrasound images as well once we pick those up. The x-ray is from Borgess and the ultrasounds were taken at Bronson (both in Kalamazoo). Side note (The right hip has looked normal in every instance since this initial x-ray)</span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-19481951527635464792011-11-30T23:19:00.000-05:002011-11-30T23:19:00.260-05:00Harness was a Success!<span style="font-size: large;">On Monday we had an ultrasound to determine if the femur head was in the hip socket. We don't find out much info at the time of the ultrasound because it's done at Bronson Hospital and the results have to be sent over to Dr. Nowicki at Kalamazoo Center for Medical Studies (KCMS). So today (Wednesday, Nov. 30) we met with Dr. Nowicki to go over the results. Drum roll.... success! The femur head is in place. Hooray! We aren't surprised to hear this because Elsie has been moving her leg just like the right one. However, it is nice to have the official confirmation. <br />
<br />
As a result, we are in the weaning process now! We're going from 23 hours a day in harness to 12! This will last for 2 weeks and then we'll move to 8 hours a day for 2 weeks. After that it can be removed. I'm so excited to have my squishy baby back! It's amazing how much I cherished holding her sans harness that 1 hour a day. Now I get it 12 :) Luckily, the time she spends in the harness can be all night long, and during the day out. This will make bath, diapers and clothing changes much easier. </span><br />
<br />
<span style="font-size: large;">The Dr. that performed the ultrasound questioned whether Elsie had a fracture. Dr. Nowicki explained that what she saw was probably abnormal bone, which may look like a gap in the bone on the ultrasound. He said that even if it were a fracture, the treatment is 6 weeks in the harness, which we just completed. The Dr. at Bronson also noted that her femur head, though present, may be small. Although this isn't great news, we are lucky that she for sure has a femur head. Many with PFFD are born without a femoral head. </span><br />
<br />
<span style="font-size: large;">I'm very happy that Elsie is moving her leg and seemingly no longer experiencing the pain when her leg is in motion. No matter the inconvenience, the harness was well worth it. But I'm not sad to say good-bye!</span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifcM5WMapBreyDQ5I3Pf07kNkPsgilrqoEX99NM7zxEwA_rAa2ibSWX2w-4QWYH1MqRH2G7rkz1a530LAbGPKhPiQNp9hiIZ0jlQGHiZwP9ywkIp9o1hu4P4N30pQQWNPf4tNKOhWHV30D/s1600/DSC_0242.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: large;"><img border="0" dda="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifcM5WMapBreyDQ5I3Pf07kNkPsgilrqoEX99NM7zxEwA_rAa2ibSWX2w-4QWYH1MqRH2G7rkz1a530LAbGPKhPiQNp9hiIZ0jlQGHiZwP9ywkIp9o1hu4P4N30pQQWNPf4tNKOhWHV30D/s400/DSC_0242.JPG" width="257" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Elsie stretching her legs! She loves to wiggle freely out of the harness :)</span></td></tr>
</tbody></table><span style="font-size: large;">The next step is all the way out in April (23rd to be exact). We will see Dr. Nowicki for a follow-up and to discuss what needs to be done next. This will most likely be an MRI. The MRI will allow us to see exactly what is or is not present in her left leg. This knowledge will allow us to know what treatment(s) we may be looking at in the future. </span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-10841805462297477772011-11-11T22:43:00.000-05:002011-11-12T21:03:37.872-05:00Progress<span style="font-size: large;">Today, like all other days, I removed Elsie's harness for her hour of freedom. Immediately her limbs began to move all about. This is normal for her two arms and right leg, but usually she doesn't move her left leg too much. Today was a different story. Her leg was extending straight, lifted in the air. She would bring it down and flex it, just to repeat the stretching again! I truly got tears in my eyes. It was encouraging to see her move so much. Not moving her leg isn't common to PFFD, but Dr. Nowicki believes it probably is just her caution in response to the pain she experiences (which is still unknown as to the exact cause of the pain). However, with her increase in movement, I'm hopeful that it's a sign the harness is giving her the comfort we want her to experience with possible long term benefits. YAY.</span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghj6fFW03OawbzcMi_FnR4p2D_gaJckpNHykJYawuCqNj_X2eRtE9wal3wnZpqKoucZVIgnOdxlxfGgjtQVyq0KG_89IaHgxCbcCarhttuMkFQwmiJGEBRmWuJG720tKkbJQNxe7GPhq53/s1600/DSC_0004+-+Copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghj6fFW03OawbzcMi_FnR4p2D_gaJckpNHykJYawuCqNj_X2eRtE9wal3wnZpqKoucZVIgnOdxlxfGgjtQVyq0KG_89IaHgxCbcCarhttuMkFQwmiJGEBRmWuJG720tKkbJQNxe7GPhq53/s320/DSC_0004+-+Copy.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Picture Proof!!</td></tr>
</tbody></table><span style="font-size: large;"><br />
</span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-63863126456089235872011-11-07T22:15:00.000-05:002011-11-07T22:15:59.024-05:00The Harness<span style="font-size: large;">Elsie cries when we move her left leg. Right off the bat it was evident that Elsie does NOT like her leg to be manipulated. PFFD does not normally come with associated pain so the Dr. wasn't positive as to what was causing her discomfort. The two guesses were 1) Femur Fracture or 2) Hip Dysplasia. After an ultrasound when she was 1 week old we discovered that she does have hip dysplasia. </span><br />
<br />
<span style="font-size: large;">Since the chances of having hip dysplasia and PFFD independent of each other is quite unlikely, the dysplasia is probably caused by either a improperly formed femur head, or an improperly formed hip. Either way, we won't know exactly which one is the cause (or both) until her MRI. As a comfort measure we have Elsie in a Pavlik Harness. She's been in since 9 days old. She'll be wearing it for a total of 6 weeks for 23 hours a day. <br />
<br />
Although it's a pain to maneuver around with diapers and clothing, it's been a blessing. I can see a difference in her comfort.</span><br />
<br />
<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><span style="font-size: large;"></span> </div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: 1em; margin-right: 1em; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG7a0Hd6hIn1EfYnKqOS39L4SY8VQWfsgk7EOqK5H2YwzKCKT-E0Y9jr02q0hpbKrRY7hj-vtL39vS3-vjkaWs9cI2oAhnKYGnAqgQu5vPtkE-DnKv5NbMHr7laAxaBvW1nGZQ114qiyZa/s1600/DSC_0536.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: large;"><img border="0" height="320" ida="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG7a0Hd6hIn1EfYnKqOS39L4SY8VQWfsgk7EOqK5H2YwzKCKT-E0Y9jr02q0hpbKrRY7hj-vtL39vS3-vjkaWs9cI2oAhnKYGnAqgQu5vPtkE-DnKv5NbMHr7laAxaBvW1nGZQ114qiyZa/s320/DSC_0536.JPG" width="214" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Elsie in the harness at 9 days old</span></td></tr>
</tbody></table><span style="font-size: large;"></span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-80824777986070987492011-11-07T21:26:00.000-05:002011-11-07T21:26:11.967-05:00Change in Attitude<span style="font-size: large;">The news of PFFD was devastating. So many questions with few immediate answers. And the answers we did receive were not comforting. The discovery of Elsie's deformed femur unfortunately stole from the joy of her arrival. It was frustrating knowing immediately that Elsie would face surgeries and physical challenges and we couldn't do anything to make it go away. After a few days in this mindset, I decided I needed an attitude change. I came to the realization of a few things:</span><br />
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<span style="font-size: large;">1) A leg is not life threatening. She can survive, thrive and have a wonderful life even if worse case scenario she needs a full amputation.</span><br />
<span style="font-size: large;">2) We are fortunate eniugh to have health insurance and jobs that will give us the flexibility to do all surgeries and physical rehabilitation/therapt as necessary</span><br />
<span style="font-size: large;">3) PFFD can be bilateral and can also be accompanied with a deformed foot and lower leg. Thankfully Elsie's lower leg and foot appear to be in great shape and her PFFD is only Unilateral.</span><br />
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<span style="font-size: large;">My attitude truly did change. I have a beautiful, healthy daughter. God will take care of her and I'm confident of that.</span> <br />
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Just to be clear, I was never disappointed or devastated by Elsie. She is a true blessing and perfect addition to our family. I have felt that way since moment one and still do. I was just dwelling on the negative a little too much. Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-41729785915726067262011-11-07T20:12:00.000-05:002011-11-07T21:26:39.865-05:00The Blame Game<span style="font-size: large;">One of the hardest parts initially to me as Elsie's mom was wondering what I did in my pregnancy to cause this. I did many google searches on the cause of PFFD. Even though I kept seeing the same answer, there is no known cause, I didn't believe it and blamed myself. I wanted to ask Dr. Nowicki if he knew of a cause, but was afraid I would cry asking.... or even worse learn that <em>I actually did </em>cause it. Eventually I did ask and he assured me that it is something that just happens. So to any PFFD mom who may be reading this... if you're like me and you wonder if you're the cause of PFFD for your little infant and are too afraid to ask........ You're not! It's something that just happens and isn't something that is caused. </span>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0tag:blogger.com,1999:blog-4489086662771270922.post-90612269635081476872011-11-05T21:31:00.000-04:002011-11-07T21:27:03.386-05:00The Beginning<span style="font-size: large;">Elsie was born on Monday 10/10/2011. Instantly I was in love. Elsie was the perfect addition to our family. The first hour after her birth she was on me and I gawked over her, starring at her beautiful face. After the initial hour she left my side to be cleaned, measured, weighed and evaluated. That's when the midwife noticed the difference in her leg lengths. Neither my husband nor I had noticed this. The nurse brought it to our attention as we had family visiting. This was awkward since we were shocked and didn't know what to think, but also had family in the room so we wanted to keep up the positivity.</span><br />
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<span style="font-size: large;">We almost had to put the leg difference on hold in our minds for the first few hours because we had many family members visiting. Eventually we had the pediatrician visit (as he would with any newborn). After he looked at Elsie, he told us that he was going to order her an xray and that we'd be seeing an orthopedic specialist to discuss her leg prior to discharge.</span><br />
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</span><br />
<span style="font-size: large;">We had the xray done in the room and at this point we didn't have any idea what the leg being shorter meant. On Tuesday evening, 10/11/11, we meet with a resident orthopedic doctor. He said that he works with the doctor we would eventually be seeing. He examined Elsie and looked at her xrays. Also, he discussed these items with Dr. Nowicki (our Orthopedic Dr). After talking with Dr. Nowicki, the resident said that the limb difference could be one of 3 things: 1) hip dysplacia; 2) femur fracture; 3) Proximal Femoral Focal Deficiency (PFFD) Of course, we didn't know what any of this meant. The resident explained each in a nutshell. After he left we were hoping it was just a fracture, so it would eventually heal. We were hopeful this was the cause because there was obvious discomfort when her left leg was moved. After doing internet searches, we were really praying it wasn't PFFD. We would find out more the next day when we met Dr. Nowicki.</span><br />
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<span style="font-size: large;">On Wednesday, 10/12/2011, we met Dr. Nowicki. He is a pediatric orthopedic specialist in the Kalamazoo area, working at the Kalamazoo Center for Medical Studies. Immediately upon visiting, Dr. Nowicki examined Elsie. He didn't have much hesitation in saying the she for sure had PFFD. It was evident because of 1) the xray and 2) the skin on her thigh wasn't saggy or baggy. It was normal, so that eliminated the fracture (if there were loose skin, that would have signified that there is supposed to be a longer leg there. </span><br />
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<span style="font-size: large;">Unfortunately, Matt and I were crushed. We didn't want this perfect little girl to face any set backs in her whole entire life, let alone start off with one. This was a shock. We were of course overwhelmed at this point. Not only is labor and delivery a long, tiring process, but we had this bomb dropped on us. I just wanted to hold little Els and think of a way to take care of her. </span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf8V_UEKYLlurTicOMEJRrZdyXK_neRAiUOgNw48k5pYgPgroa1HhfUgSaR17Oa1V5T8oPRLVajAAYIWYuyjBBgaj8kpaboipNY8F66V7gAkEZOMSHbB_vhwYSMDrIAEzTGv4DDpm0m64E/s1600/legs+for+blog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="214" ida="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf8V_UEKYLlurTicOMEJRrZdyXK_neRAiUOgNw48k5pYgPgroa1HhfUgSaR17Oa1V5T8oPRLVajAAYIWYuyjBBgaj8kpaboipNY8F66V7gAkEZOMSHbB_vhwYSMDrIAEzTGv4DDpm0m64E/s320/legs+for+blog.jpg" width="320" /></span></a></div>Elsie's Momhttp://www.blogger.com/profile/03439014935576098323noreply@blogger.com0