US trip - action plan

This is my last post directly about our US trip (back in, gulp...) March.

Every time we go to see US specialists I am always overwhelmed by:
- their superior expertise
- patient communication style
- vast experience
- support staff and facilities

It wasn't different this time either. I really-really want Fi to have access to these facilities.

At the same time, once again I have realized that not everything is about science. I like rational solutions, I am a lot more comfortable planning overwhelming finances and fights with insurance companies than thinking of the emotional side of being born physically different and what might help one to be a well -adjusted adult. Heck, I feel we are all screwed up in our own way, despite our parents best or worst efforts, I am thinking Philip Larkin: This Be The Verse...

So it really helped me to talk with my friend and her teenage daughter in Atlanta  to start thinking a bit more actively on this subject of emotional health.

I have come away with a new item for my to do list for the next few years, namely to ensure for Fi to be very involved in a sport that she enjoys and can do, which is most likely to be swimming. Please don't make me do a post about the researched impact of sports on self esteem :-)))

Hypochondroplasia family get together

August has started, so this MAY mean that I will have time to post a little bit more often than I have recently.

Let me do an inventory of what I would like to write about over the next few weeks, not necessarily in this order:

- Madison family get together
- US trip going away action plan
- Emotional well-being
- Misguided article on seizures
- I never finished my article series about limb lengthening, so I owe the 3rd portion
- I think there is another article on seizures I haven't shared yet
- Where we stand with GH treatment
- PRECICE limb lengthening
- Low PAPP-A and SD

So, the family get together. This was our second time meeting with 3 other families and we had a new family coming along as well. It surprised me again how much we had to talk about and how it didn't matter that we hardly know each other.

No matter what lots of people say, HCH is not like achondroplasia, although some features are very similar, there are lots of other potential concerns, so meeting other families is such a unique opportunity. I wish we had a chance to do that more often, but we haven't really connected with any of the 3 families we know in Ireland.

It was great to see one of the fellow blogger mums and her family as well, HI VANESSA!!! I can't help but wonder if this group will meet again with Dr Pauli retiring. I suppose at least we have FB to keep in touch.

Atlanta

From the Florida heat we flew to the very pleasant weather of Atlanta to meet with my hero mum friend E. and her teenage daughter A. who has hypochondroplasia and has had lengthening on both the arms and legs and is basically my height.
We had such a great weekend. Talking to someone going through the same rare journey with a similar outlook on life is such a unique treat. I will remember the dynamic of the weekend and the discussions we had for years, quite probably for ever.

Discussing the difficulties  honestly is never easy, but it is a lot easier when you have a soul-mate to share with.

Meeting Dr Paley

Let me preface this by saying that I have watched a ton of videos, read a lot of publications and presentations and have spoken to a number of patients and parents of Dr Paley. So I pretty much thought I had an idea about who we would meet. He actually surprised me and was a lot nicer and lot better communicator than I had expected.

This is a picture of Fi during the consultation before she actually fell asleep (it was a long wait).

So Dr Paley spent an hour with us, he first explained the protocol for lengthening and then he answered every single one of my 19 questions and more, in great detail, never making us feel that he had done this a million times. He actually made me feel like he liked parents who ask questions which is a huge bonus in my eyes.

There are a few differences between his approach and the one discussed in Baltimore:
- He prefers doing the arms after the second leg lengthening
- He would do surgery for girls as young as 7 not at 8 as they can be emotionally more mature
- I think he would do internals in the tibiae at the age of 12ish even if the growth plates haven't completely closed

He was very helpful when it came to discussing non-US treatment options mentioning several different options.

He examined Fi very well, by now I can always easily tell how much any doctor knows about HCH just based on what they examine and how and he was clearly very aware of her condition and what needed to be assessed, unlike all orthos we have seen in Ireland.

All in all it was a great visit, we will see him again in 2 years and I think we will then make a more precise plan.

If anyone is interested in my 19 questions, please e-mail me and I am happy to share more detail on a more private forum.

West Palm Beach - 2

If you ever want to go on a sun holiday I think West Palm Beach is the place to go. I have to say that I have totally fallen in love with the place and we haven't seen all of it.
Thankfully Fi is a really good travel companion. We were able to go downtown, walk around City Place get a bite to eat, enjoy the sunshine... I stand open for correction, but this is how I imagine Spanish colonial revival style... I could be wrong.

We then got to walk all the way down to the beach, the city is immaculate, clean and very tasteful, if you like this style, I personally find it charming. I think it suits the climate. By the time we got to the beach, Fi was fast asleep, I dragged the stroller down to the beach and dipped my feet into the water. It was so warm, everyone else was wearing bikinis, felt a bit out of place in my jeans and T-shirt, but we made it to the beautiful sandy beach, can't complain.

If you have any prejudice about Americans being on the larger side, you will forget it in West palm beach for sure, I have seen some of the skinniest and most stylish women there. Also there were a lot of gay couples around which we don't get to see here much and I really like the freedom this represents.

The next day we went to the outlet mall which just opened at the end of Feb. talk about timing and shopped for the 3 girls. Fi LOVES shopping and she was so easy-going I couldn't believe it. I mean do you know any other nearly 3 year old who will shop for 3-4 hours, neither do I. 

This is the time when I say that I make shopping in the US a priority :-)...But really, kids' clothes are great quality, wash well and I am all for bargain hunting. Enough to say that I won't have to shop for anything other than winter coats for the next 2 years. All this for the fraction of the price we would spend here.

Moment of shame: I have always had this theory about how one has this awareness about one's own children, almost like a sixth sense, I find that I always know when they are behind me. I have stepped on others' kids, but never mine. Well, my theory is wrong, there was a Desigual outlet and I stepped on poorv Fi... She was unharmed and I could continue to enjoy looking at all their colorful clothes. I love that brand. 

Our appointment with dr Paley was on Friday and I will do a separate post about that tomorrow. 

West Palm Beach - Quantum House

Just got back from 10 days in the US, the purpose of our visit was to see Dr Paley and Dr Pauli. It wasn't easy to leave the other 2 behind as Lia has been unwell for over a week and just stopeed having fever the day before we left.

Fi broke my phone's camera on the first day so none of the pics in the next few posts will be mine. I couldn't really make notes of my thoughts, it was just too busy, too jet-lagged, too much really, so I'd better get this done now while everything is still so fresh.

We left the Irish winter last Tuesday 4 AM, putting our winter coats in the orange suitcase which otherwise only had chocolates for gifts at the airport. Had 2 very uneventful flights, other than half of the passengers being sick on the plane: never ever take a flight out of Dublin the day after Saint Patrick's day... But really it was fine, the 20 year old guy beside us fell asleep about 2 secs into the flight and was drooling the entire time, I wish Fi would do that, but she decided to stay awake and entertain herself with the inflight entertainment system for the whole duration of the flights, I have no complaints!!!

Arrived in West Palm Beach at 5 PM. By the time we got to the accommodation we traveled 20 hours. Fi never even whimpered, and was ready to explore all. Guess which suitcase made it to the summer weather, of course not the one with our summer clothes in it. But we got it soon enough, it wasn't too bad really.

I didn't rent a car, for the few trips we had our "own driver" whom the House recommended. More about him later.

We stayed at Quantum House which is within Saint Mary's Hospital where Dr Paley's Center is. The House is amazing. So beautiful, clean, affordable. Dinner was provided every day, there was plenty of food in the pantry, it really made life so easy.
We were up early every day playing in the garden, the mini golf course, the playground, the butterfly garden. There was some program for the kids every night, therapy dogs, piano and musical concert with tutus being given to the girls. Weekly golf lessons. The organisation is just so impressive.

The other families staying there were all lovely and I shall remember them for ever. The Russian lady whose family sold everything to get their child treated who was born without a fibula. Such a real eastern European intellectual, a life-long connection was made.
The beautiful couple who had 4 of their own extremely nice kids and adopted son with an undiagnosed form of dwarfism from China who was getting treatment there. They are about to adopt a second kid with achondroplasia.
The English lady with her 10 year old who listened to classical piano music on her phone in the morning. She just helped everyone in her own quiet, polite way,
The American couple with the 3 year old. They just worked so hard to help out in every way although their kid has been struggling and they were not really getting any sleep.
The mother from WI whose eldest girl was being treated, she moved her 5 children down to a condo in West Palm for the duration of the treatment while her husband stayed home to work.
The Asian mum whose son had fixators on but was studying so hard, he got accepted to Yale as a pre-med.
My pen pal whom I call a friend now, whose son has pseudo-achondroplasia and is being treated.
All have so much courage and are so special I will never forget them.
Here is a pic of Fi and me admiring her at the piano concert tutu night... What can I say, soemthing like this can only exist in Florida, right???