Tuesday, September 25, 2007

She Just Doesn't Fit the Mold

As the tears flowed once again this afternoon, I couldn't help but think about all we've been through in what seems to be a never ending trek to 'fix' something Laura needs fixed so she can be 'normal'. I remember the total satisfaction that came over me, along with the enormous feeling of relief, the day we removed Laura's g-tube. I thought that it was the end. That she would be fine. That we didn't need to worry about anything else. We had conquered it and life would go on. Normally. Whatever that is.

Needless to say, I was wrong. Big time. It was just the beginning of paying more attention to her clubfeet issues that had been pushed to the back burner as we worried about her every breath. Somehow feet just didn't seem to be all that important at the time. Now that she was breathing, and yes, even eating on her own, her feet jumped back in to the spotlight. And they have commanded a large spotlight ever since.

It has been a long road. She has atypical/complex feet that don't 'fix' like normal clubfeet. We've agreed to several smaller surgeries in an effort to correct them for good after casting her with the Ponseti Method over the course of several years. Then we agreed to use SMO's because she had low tone and was not as stable as she needed to be. Finally, just a few months ago, we agreed to let them fit her for an AFO on her most difficult foot thinking it might help. But my gut just churned. I couldn't help but think that there was something we were missing. Something obvious that wasn't normal, but given that we were dealing with Laura, normal didn't count.

A few weeks ago the orthotist brought the first AFO to an appt in order try it on Laura. I can only say that my gut churned harder and harder as the day approached, and when he put it on and it did nothing, absolutely nothing to fix her heel varus rollover, I felt at once relieved and scared all that much more. The orthotist stated that he'd remake one in order to see if it would really do something because he felt it would. I agreed. We were to meet tomorrow afternoon for that fitting. I was not happy but life goes on.

This past weekend I was sharing with my SIL Diane all that we had been through and what we felt our options were. It helped because in talking it out I put some things in order in my thoughts. But overall, my gut churned even more and I didn't sleep well that night. I kept going over and over in my mind what the possibilities were and how we could avoid AFO's and surgery. Both were supposed to be short term but in our experience, nothing is as it is supposed to be with Laura so I wasn't counting on that. I kept thinking about my research on her latest diagnosis of heel varus and my mind kept pushing the connection to clubfoot and trying to figure out how that could relate to our issue.

Heel varus is a part of clubfoot but is corrected in the process of the Ponseti Method. However, Laura's left foot was not cooperating, even for Dr. Ponseti, and it struck me that perhaps she might be relapsing. Could it be that simple? Note that I use that term loosely because we're talking about Laura but could it really be that simple? Could some casting and returning her feet to the Mitchell's for night and naps really do it? Really? As my mind chewed on the possibility of surgery in about a year or so that would forever impact Laura's ability to have pain free feet when she's thirty, I just felt we needed to pursue every possibility.

Yesterday I wrote another letter to Dr. Ponseti and enclosed a few pictures. He replied today that her feet were indeed in relapse and that putting her back in the shoes was necessary. So we will do as he asks. Meanwhile, it seems that the meeting for the fitting of that AFO has been pushed back to the end of October and beyond. Could it be that the Lord is trying to tell us something? Could it be that she doesn't need them at all? I guess in the long run we shall see. Meanwhile we will be praying for provision as traveling to Iowa seems to be a given at least twice in the coming months (if our previous experience tells us anything) and three or four times wouldn't be out of the question. Between our tight budget, medical expenses, gas prices, homeschooling and such, the Lord hand is needed to set everything in place for us.

If you could pray for us in this matter I would be very grateful. Wisdom, provision, listening ears and a willing heart to do whatever the Lord directs would be my requests. If you have knowledge of something else we need, please feel free to pray for that as well. I'll do my best to keep you updated as we go through this new journey. Meanwhile, here are Laura's feet this week. Prayer for the Lord to straighten them miraculously wouldn't hurt, either. :)

1 comment:

Angela Sustala said...

I'm not sure how exactly, but I came across your blog looking up stuff about clubfeet. I am 23 weeks pregnant with our 5th child, who was diagnosed at our 18 week u/s with bilateral clubfeet. At a 20 wk u/s with a perinatologist, the feet appeared to be mildly clubbed. For this, we are grateful and are asking God to miraculously heal our baby boy before his birth. In the event that God chooses a different plan, we want to be prepared - and you seem to have lots of information. I am currently looking into drs to interview before our little boy arrives - and have heard from other parents that the Ponsetti method is the way to go for treatment and I'm game for that, but where is the question of the day. We live in HOuston and I've heard that Shriner's or even Scottish Rite in Dallas are superior when it comes to orthopedic issues. We are willing to travel - and oddly enough, spent 3 years living in Iowa - but have been in Houston for the past 2 years - go figure! Anyway, I'm rambling and don't really have specific questions for you - just generally speaking if you have wisdom to share, I'd be very grateful!! My email address is sustala(at)gmail(dot)com Thanks in advance ... and BTW, your daughter is just beautiful!