Friday, September 30, 2011

Baby Steps

First and foremost,  I want to send out a thank you to everyone from nosurgery4clubfoot.  I got so many wonderful comments and uplifting stories.  Its nice to know that a lot of you could relate to my frustrations. I also appreciate everyones honesty about their treatment history.  I saw that a lot of parents trusted the so called "Ponseti trained" doctors and are now dealing with relapses and surgeries.  My mission over the next few weeks is to ensure that Nolan can get the best care I can possibly manage to arrange.

Over the past week I feel like I have at least made a little progress toward my little man's treatment.  By the end of this clubfoot journey I am going to be an insurance manipulating machine!  So there are currently 2 possible options:  If the little dude decides to be on time/late I can switch to Aetna PPO insurance in early november with my work and be able to see Dr. Zionts in LA without a referral as early as Jan 2.  As long as treatment isn't being delayed too long we would be ok (this is of course something I still need to discuss with the doctor.)  Option number 2 I am currently trying to unfold.  My husband has Anthem HMO which is accepted by Dr. Zionts in LA as well.  However, since it is an HMO, I will need to have a referral by a primary care physician to be able to see that specific doctor.  This poses a few questions, will a pediatrician here in SD be kind enough to refer me up to LA?  Should I just set up a pediatrician in LA so I get referred to the LA doctor?  And would this even be faster to get treatment then situation #1?  I have heard 2 conflicting reports:  One is that I cannot put an infant on either insurance until his SSN comes in.  Once it comes and the paperwork has been filled out, the insurance will not take effect until the first of the month.  Report 2 is the same as report one BUT the insurance is then back dated to the DOB and the insurance will backpay for any treatment.  I like situation number 2 much better!!!!  I have my husband making some calls today so we will see how all this unfolds.

So you might be wondering where this Dr. Zionts name came from.  Well first it came from nosurgery4clubfoot.  I've been trying to research every doctor here in SD to try to find someone who can  effectively treat clubfoot.  Kaiser says they have a doctor (Dr. Shoemaker) but he is not on the Ponseti certified list even though Kaiser has told me that this is the treatment they follow.  I have an appointment on 10/18 to talk to him.  Then there are 2 doctors at Rady's children's hospital that are certified but it does not look like they actually practice the method regularly.  One doctor is Dr. Mubarack who seems like he was once on his game but now is over it (just an impression and I haven't actually talked to the guy.) The other is Dr. Maya Pring.  She seems like an amazing woman but yet again she doesn't focus on clubfeet. She is a pediatric orthopedist who specializes in hip problems but can also treat a clubfoot if it comes her way.  Another big red flag is the Rady's website that describes their "Ponseti Treatment".  Everything seems right until the end.  The last sentence on the page says most children have to get surgery at 1 month (tendonectomy) and then another at 8 months!  We are still trying to set up a consult with one of these 2 doctors through a family friend who has some pull at the hospital.  We are still waiting for an answer.

Now for Dr. Zionts...He seems wonderful!  He is a clubfoot specialist who runs clinics in LA 3 days a week.  Now here is a doctor I feel comfortable with.  The name was given to me by some moms on the support group and I am extremely grateful to be pointed in that directions.  The next baby step is figuring out how to get there.

On a separate note, my husband called our genetic counselor we have with Kaiser, Amy (who has been the most amazing person through this whole ordeal.)  He explained how we were treated at our last ultrasound by the OB.  Amy was appalled!  She said that leg length is not something that can be diagnosed via ultrasound due to a high rate of error.  She said the info hadn't even been given to her, and better yet we should have been referred to an orthopedist or Amy to explain what it meant and treatments.  I guess the OB's education medical opinion of "nothing can be done" is not apart of Kaiser standard protocol.  Now I'm a little confused...was the LLD just an error on the ultrasound or is the fact we could see it on the ultrasound mean it is pretty significant.  We have another appointment scheduled on 10/4 to answer that question.

At least one good thing happened this week...I am still working!  I am now training people how to take over my shift when I go on maternity leave so it is a lot of "lift this" and "can you grab that."  The dizzy spells have stopped since I have been taking it easier.  Now just 5 more weeks of work and 9 more weeks until my due date!  I think the biggest shock of birth will be that there is a baby coming and not just a leg.  With all the doctors appointments and constant googling I have to remember I'm having a son...not just a leg that needs to be fixed.

Friday, September 23, 2011

Information overload

So I have a confession to make...I have been on a googling rampage this week.  Mostly I have been looking for anyone who has experience with an LLD and clubfoot.  It doesn't seem like there are a lot of us out there and even less doctors that have the qualifications to treat it.  Here in San Diego there are only 2 Ponsetti Certified orthopedists which are both located at Rady's Children's Hospital.  Then the Rady's website has a description of their clubfoot treatment which is definitely NOT the Ponsetti confused.  My husband and I are currently trying to pull every string we got to try to have a consultation.  Of course if the consultation goes well there is the whole issue of insurance.  Currently I have Kaiser insurance and can only go to a Kaiser doctor.  My little man is due Dec 1st and my work has open enrollment in Oct/Nov that goes into effect Jan 1st.  So the question it worth being treated by a Kaiser doctor for the first 30 days then be able to transfer to the certified orthopedist when my insurance can transfer over or do I wait to get treatment all together.  I guess that is what the consultations are for right?

I might have a lot of time coming up for consultations soon.  Lately I have been having dizzy/short of breath/heart racing spells in the morning at work that lead to me vomiting for the next hour or so.  I thought it might be a return of my horrific morning sickness I had until I was 25 weeks.  Had an appointment with my midwife yesterday and she said its a vaso-vascular issue?  Supposedly when I am constantly bending at work (which I do a lot of!) I am cutting of blood supply and causing my nervous system to go haywire...great.  The solution?  I now have to go into work and explain to my Asst. Curator why I have a doctors note that says I am no longer allowed to bend at the waist.  This is going to go over real well.  My work has been amazing and very supportive this entire time but now I feel like my issues are getting a little ridiculous.  I can just image what their reaction is going to be.

Monday, September 12, 2011

My first blog...ever

I am new to the whole blogging thing but I felt that sharing my story might be able to help someone who is in my position in the future.

Our journey so far:

On July 12, 2011 I arrived at Kaiser Zion hospital to receive the first good look at what was growing inside me. This was my 20 week ultrasound and I was honestly thinking the worst thing that could happen was that the tech could tell me I was having a boy (a little dramatic I know but I wanted tu-tu's and barbies so badly!). Not only did I find out I was having a little boy, but this little boy has a unilateral clubfoot on his left side. My husband (Cameron) and I then spent 2 more hours with the tech and a doctor scanning every possible surface of my unborn child. They looked at his palate, kidneys, spine, heart, name it. We then were whisked away to a genetic councilor , Amy, who was extremely patient and kind. She calmly explained that his clubfoot could be a sign of another genetic condition, more specifically Downs Syndrome or Spinal Bifida. The ultrasound screening and my previous blood test put me at a very very low risk for either of these two but I was offered an amniocentesis. By this time I was gushing tears and my husband was looking a little glossy as well. We are both 25, active, healthy, and have a clean family history. We were in shock that something like this could ever happen to us. Amy kept telling us that clubfoot is something that is genetic and there was nothing either of could have done to prevent it or cause it. Nonetheless, I continued to beat on myself that I had to have done something. I hadn't even so much as taken a tylenol during my pregnancy, I refused the anti-nausea meds from my midwife when I could barely work through the morning sickness, and I had carefully counted every gram of protein I ingested on a daily basis to make sure I was being healthy throughout my pregnancy with my semi-vegan diet (I still eat organic "hippie" eggs and will occasionally have fish). Still, this had to be my fault.

Once Cameron and I got home we both broke down. I fell into pure pity party mode. My family that knew I was anxiously awaiting the news of the baby's gender had been calling once an hour after the scheduled appointment time. I turned my phone off. After a lot of consideration we called Amy and opted for the amnio which was scheduled for the next day. Cameron and I have the upmost respect for those who are special enough to care for a special needs child but we both agreed that we are not that special. (I know that might be extremely heartbreaking or even offensive for someone who is reading this but I feel like I should be honest in case there is someone out there feeling like they are the only ones that feel that way.) The amnio, though extremely painful, went well. After a very long 2 weeks, the results for Downs and Spinal Bifida were both negative and we were left with an ultrasound scheduled for Sept 6 to follow up on my little one's clubfoot.

Between July and Sept I started reading everything I could on clubfoot. I found blogs of moms and amazing children that continued to reassure me that even though there is something wrong with my little one now there won't be something wrong with him forever. The Ponsetti Method results are so encouraging and Dr. Google consistently eased my fears of what the future holds for my son. I honestly felt that I had this clubfoot thing completely under control (BTW Russell's Feet blog was one that really helped me through a rough patch). One of the hardest things to deal with during these few months was my family. There are extremely loving, involved, and well...sometimes very negative. I kept getting facebook messages, emails, calls, and texts about how sorry they are for me and that they are praying that God will heal his foot. Maybe it's the prego hormones but the last thing I need is my support failing to realize the problem at hand and hope that God will just take it all away. Faith is a miraculous thing and there has honestly been some amazing medical anomalies that have occurred. My little man will be fine in boot and bars, save the anomalies for someone whose life is really in danger!

Almost done I swear...

On Sept 6 I went into Kaiser Zion yet again for another ultrasound. No longer was my concern on whether I was having a boy or girl! Looking back, my need for a little girl was so frivolous. I'm almost embarrassed. Cameron met me in the waiting room and we anxiously awaited for the tech and ob to produce "no news" from the ultrasound. Yet again we were wrong. The tech was extremely friendly and bubbly even though my little man would not stop moving for 2 seconds to get a clear picture! Almost 3/4 of the way through the OB showed up and immediately pointed out that his left leg (clubfoot side) was smaller than his right. The tech measured the femurs and they both were the same size but it appears that is tibia and fibia on his left are currently measuring at 3cm and his right is measuring at 4cm. Oh and he has a 6th toe on his left foot as well. Cameron and I pretty much went into a haze at this point and the OB coldly said "I don't think there is anything we can do about a short leg. He will just have a really bad limp his whole life. Or his body could catch up and there is no real concern. Or we can't measure properly because his foot is turned in so badly and there really isn't that big of a difference. Or his left leg could stop growing all together." She quickly pushed us out without any other explanation (I was the last appointment of the day) and scheduled us for an appointment in 4 weeks to compare the growth of his legs. My husband handled the news relatively well...I last a few hours before I broke down.

Since the OB was little to no help I had to reference Dr. Google yet again to get some answers. I found that there is actually a lot that can be done to correct a one short leg (referred in the medical community as LLD or leg length discrepancy). Small differences require no treatment, medium might require an insole, and a large discrepancy might lead to a surgery or 2 in the future. Since I am very early on in this I am anything but an expert but the fact remains SOMETHING CAN BE DONE. I am not going to loose hope that my little man will develop like any normal child. I have yet to tell my family of the doctors new findings mostly because we still don't know what it really will be like. I am not ashamed or embarrassed of my son's condition; I just don't need any extra negativity to stress about. I did disclose this info to my closest (yet furtherest away) friend who is currently pregnant with her second perfectly healthy and normal little girl. She said something to me that turned my whole outlook around on his clubfoot and LLD. She told me "No matter what happens, you will have the raddest little dude around." Whenever I catch myself in pity party mode, I just repeat in my head what she told me and it immediately returns my head securely on my shoulders.

It is so easy to feel sorry myself or to be angry at those around me. It seems like everyone in my world from friends to family to co-workers are having perfectly healthy pregnancies and babies. There are days I feel cheated. There are days that I feel overwhelmed. And then there are days I feel confident and in control. I am now at 28 weeks (almost 29) and I am currently digging myself out of my pity party and trying to constantly remember that I am going to have a rad little dude.