Second Opinion

For years I have travelled to NYC, either with B, friends, or my Mom to celebrate our birthdays.  To me it was magical and just bursting with life and opportunity.  As many times that I've been there, I had not been there in at least ten years and then last year I had a budding idea of going again.  Especially with my Mom and M, maybe even for our birthdays in March, but the timing wasn't right for my Mom.  This idea of going to NYC was running parallel to my medical challenges, I never thought the two would meet, but they have and now we're at a vertex.

So after the advice of getting a second opinion and the recommendation of a particular doctor, I made an appointment and he happens to be in NYC.  I'm so glad I did.  The hospital was much easier to navigate and once I got to the doctor's office, it was actually an office with a waiting area and a restroom.  We got there early, so I was ready to wait, but they saw me right away which was a nice surprise.  When the nurse came in to check my vitals, I mentioned that the automated blood pressure cuffs do not read accurately for me and she said it wasn't an issue and got out a manual cuff.  When I went to the other hospital, they said they did not have a manual cuff and I had two readings of my blood pressure over 200....  The nurse then asked me to change into a gown which also surprised me as I wasn't expecting an evaluation, the other visit was basically reviewing my MRIs and a recommendation.  He came in quickly and tested my strength, balance and nerve responses (I'm sure there's a medical term for this).  He watched me walk around the room and gave me various physical tasks.  As he was looking at the MRI report and the MRIs, he questioned the report and called another doctor to look at them too.

I felt like I was in good hands.  

The outcome is similar to the other recommendation, but smaller and in steps, not all at once.  

Thank heavens.

He did talk about risk, but the risk of the surgery is the same for everyone with achondroplasia and assured me that I would be ok.  

In order to have the surgery there, I have to be screened at the Skeletal Dysplasia Clinic and he would like to see me that same day with another neurosurgeon.  So now we're waiting for the stars to align and find an appointment that works for all parties.  

The trip to NYC was a lot, which I'll write about in another post, so the thought of going again is a little daunting, but the confidence and comfort I felt leaving the appointment makes it so worth it.  

I'm so thankful for the advice and recommendations I received from the dwarfism community.  If I can give you a takeaway from this, here are two:

1. Don't be afraid to reach out to people (and to those people - THANK YOU).  
2. Get a second opinion.  It's your body, it's ok to ask too many questions and learn as much as you can.

Physical February - sort of

February has not been fierce.  

Our claim with insurance has been slow going, so have the repairs to the basement.  It's annoying.

I have also scheduled the second opinion for the 24th so it feels like everything has paused based on that recommendation.

However, I did schedule my sleep study consult which is at the end of the month and I scheduled physical therapy.  And what a gift physical therapy has been!  Many of these initial appointments have been consults so imagine my surprise after having a conversation and assessment with the physical therapist when she said "OK now we're going to get to work."  It felt great to be given something tangible after so many "think about its".  My therapist is incredibly kind and gives me lots of encouragement and compliments my progress.  I imagine all physical therapists are, but it makes all the difference to me.  I've already noticed a difference in my stamina and my confidence.  

It truly does feel like a gift, a gift to myself.  It's one of the few things I do all by myself, getting out of the house and taking an hour to work on my body and listen to it without distraction has been so valuable.  B has been working on improving his health as well and making great progress.  In the beginning I would feel a bit jealous even bitter that he would get up every morning and go for a bike ride or walk by himself, while I tried to fit in a "Grow with Jo" before M woke up.  But I get it now and I'm glad we've found ways to make space for it in our lives.  I'm also completely disconnected when I'm in PT.  The first time she put me on the heating pads and told me she'd back in ten minutes, I wanted to ask for my phone.  Now it is a pleasure to be still and simply stare at the birds outside (even if they're buzzards) and feel the comforting heat.  I continue the exercises at home but really look forward to my sessions twice a week.  

Physical, forward (slowly), feeling (lots), faltering and forgiving February. 

Tonjiru

In December we went to Hawaii and my in-laws graciously met us at the airport late at night to pick us up and take us to their home.  At the time of our arrival we would have been waking up and starting our day back home and my MIL being the best, knew we would be tired but hungry and had soup waiting for us.  It was incredible, and just the thing you want to take the edge of hunger off before going to bed.  I asked her about it and she said she got the idea from watching "The Midnight Diner" on Netflix, my husband and I had seen a few episodes of it and appreciated the connection.  

When we got home I looked up the recipe and looked forward to including it in our soup rotation.  A grocery store that would have all of the ingredients for this recipe is at least 30 minutes away, so I altered some of the ingredients with what we had.  I would say this is tonjiru inspired not authentic.  Also as the recipe mentions "ton" in tonjiru means pork and "jiru" means soup, and I used chicken...so I may have to rename this recipe.  Tutujiru?  

• I cut up equal amounts and tried to cut similar size and shapes of the following:
• 1 onion
• 2 yellow/golden potatoes
• Daikon
• 4 carrots
• Cabbage
• I slow cooked and shredded some chicken thighs
• I added sesame oil to a pot and added the onions, give it a minute then add the carrots and daikon.  Then I added the potatoes, chicken, cabbage and 48 ounces of vegetable or chicken broth.  
• Miso Ginger broth from Trader Joe's would probably work well too and once I used a bag of slaw from Wegmans instead of shredding cabbage.  
• Let everything simmer for about 15 minutes, then add 2 hearty spoonful's of Miso to a ladle and lower into the soup.  The miso will melt and you can add some broth to the ladle before stirring the miso in completely.  
• You can also add tofu to the soup at this point but I always forget and it is just fine.