Thursday, February 23, 2012

Tough Choices

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. 


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. 


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. 


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. 


So, needless to say, the Limb Lengthening is exhausting to think of.  Are the benefits worth the physical toll it could take on Elsie? 


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. 


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. 


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.

Saturday, February 18, 2012

Chat with Dr. Herzenberg

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.  Dr. Herzenberg and Dr. Standard 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. 

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. 

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. 

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. 

Wednesday, February 15, 2012

Shots in the Short Leg

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). 

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. 

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)

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. 

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. 

Thanks for listening! 

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.

Friday, February 3, 2012

Developing

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. 
Trying to Roll - She gets soooo close.  Anyday now!

Strong Core (even better now, but hard to capture in a pic)

Happy, Strong Girl
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.  :)