I'm a bad blogger

I haven't looked at this blog in FOREVER as evident by the last post saying "Laura's 15 month check up" !

I have been better at using her carepage to update friends on how Laura is doing, I'm not sure anyone even reads this blog or if they did they probably don't anymore given the above :) Understandable.

It's so hard as a working mom, to maintain a blog and a carepage and a house, the list goes on and on.

So a brief summary of the last 9 months -

Cardiac-wise:

Laura has had 2 appts. since the last post both were excellent as far as news goes. The one in November 2010 she had a sedated echo - the girl is not going to be a "happy" drunk - she did not like the feeling the medicine gave her and fought it for a good 15 minutes before finally giving in and going to sleep. So the next one in April 2011 they just gave her the lighter dose to relax her and allowed her to watch some videos while they did the echo. That went over much better, they even gave her a lollipop (her first!) but when the effects of the drug wore off she threw a huge tantrum - no doubt due to hunger, since we anticipated a sedated echo she wasn't allowed to eat after 6 am and it was now almost 3 pm when we finally saw her doctor. It wasn't pretty - lol.

Anyway, she's doing good, still has a little stenosis in her conduit, and a little leak in her VSD patch but nothing to warrant intervention. Her sat rate was 100% and we don't go back again until November.

Overall Health:

Laura has been in over all good health, only a few minor colds and a couple of ear infections. We did not have to do any breathing treatments over the winter, her pulmonologist felt Laura was stronger this year and didn't need any additional protection against the dreaded RSV, so no Synagis shot either.

Tibia Hemimelia

In February we took a trip down to Florida to visit Dr. Paley at the Paley Institute. I found him while looking for information regarding Laura CLD (Congential Limb Defect) and was so excited to think we had an alternative to amputating her right leg. I didn't want to get my hopes up, but read some very promising things on his website. It was a long trip to drive from MI to FL but we stopped and visited an old friend in S.C. and it was so great to see her again, then we stopped in Titusville and was able to see the last launch of the Space Shuttle Discovery. When we finally arrived in West Palm Beach it was late and our appointment the next day took up most of the day so we really didn't get to do any "touristy" stuff. We got dressed up and when downtown to the Cheesecake Factory for dinner and then to the beach the next day for about an hour before starting our way back home.

As for the appointment. . . well it was sorta middle of the road, the one thing I didn't expect. I was hoping for an excited "I can help you save her leg!" or "I'm sorry, there really isn't anything I can do." What we got was "well, it's one of the worst cases I've seen. I can fix it but you really need to weigh the cost - physically, emotionally, and financially. She will need to come here every 4 or 5 years for surgery and rehab, which could take up to 4 months each time. I don't know what your jobs are, so you need to evaluate if you are able to take that much time off, and you need to consider having to pull her out of school, and losing part of her childhood. Really she's no better off with her own limb versus a prosthetic. IF both of her legs were like this I would definitely recommend doing the reconstuction on one of them." Hmmmm. The good news is no decision is needed right.this.minute.

And then a funny thing happened in April. A friend of a friend met a new neighbor, who just happened to have a 13 yr. old daughter that was born missing her fibula, similar but slightly different than Laura, and he was so excited to hear about Laura that he insisted on getting my number and calling me. He recommended that we take Laura to the Rubin Institue in Baltimore to see Dr. Herzenberg - Dr. Paley's old partner. I never even thought to see if Dr. Paley had a partner when he was in Baltimore, when Laura's U of M ortho said that Dr. Paley had moved from Baltimore. Dr. Herzenberg is a former U of M dr. and this guy - Dave - who called me said, "please go to Baltimore, we've been going there for years, Dr. H is the best. Dr. Paley was there when we first started going and pardon my French - he's an asshole" lol.

So now we are thinking we might need to take a trip next spring to Baltimore . . . I would definitely be interested in Dr. Herzenberg's opinion. I guess it will depend on how we are financially, and how Laura is cardiac wise.

In the mean time, here's a few pics of her from the last 9 months. She just turned 2 last month, I can't believe how fast time flies: