Thursday
We took the itty bity Continental ExpressJet flight to Cincinnati, which by the way, actually lands in Kentucky. We got lucky and were able to have an empty seat for Maya to sit next to me. She fell asleep for about an hour thank goodness so the flight was pretty good. We got in our mini van rental (Charlie and I might as well start checking these out since we will have to buy one soon...yes, a mini van. Who would have ever thought. Think wheelchair lifts...). We were lucky enough to have enough grandparent support - here is Maya, Grandma, Nani and Grandpa.
After settling into the hotel, Hyatt Regency, we headed to the plaza for some dinner where Maya ate our entire appetizer plate of SPICY spinach cheese dip. She wasn't very happy when it was "all gone".
We headed to the first event of the conference. An ice cream social. One cannot describe the chaotic-ness going on in this room. It was a mix of emotions for sure. You can tell people were happy so be seeing each other again, but we were just looking around at all the kids, mainly the Type 1 kids, and couldn't help but be grateful that Maya is Type 2. Our heart really does go out to all these families and what they have been through and continue to go through. It was nice to meet with some other families. We met this nice family from Kansas City who have a 19-month old who is a Type 2. She was in this mini wheelchair and wheeling herself all over the place. She just took off and her dad had to go after her. It was neat to see such a tiny little thing exploring in her little chair. We all went around and met a few other couples before getting the very tired Maya to bed.
Charlie and I took advantage of babysitters and headed to the movies. We saw Hangover. Seriously a funny movie. I haven't laughted like that in a long time. Good choice Chuck!
Friday
Prior to the first general session, we dropped Maya off at the childcare. We were happy to see so many volunteers in the childcare. Maya was happy to play with other kiddos her age that weren't walking and crawling all over her!
The general session had 3 speakers:
1. FDA orphan drug dept - SMA is a rare disease so there is a special act to protect the rights of making drugs for orphan diseases. Most companies don't want to fund rare diseases since there is little to no profit so this department seeks various avenues rare disease advocates can take to get drug treatments out there.
2. Another speaker from the national inst of health spoke about the importance of newborn screening of SMA and other childhood genetic conditions. The thought here is that drug intervention has better success before symptoms present. Like the drugs Maya is taking. Had we given it to her when she was 4 months old, we could have delayed any of the functions she has already lost. What we wouldn't give to have found that out earlier! We did what we could in the time we had so no regrets. I do believe in this group's advocacy of newborn screening though and would love to talk to Maya's ped about it.
3. Final speaker was FSMA's lobbyist. He spoke about what we can all do to help support the SMA Acceleration Act of 2009. There are 3 ways to help - write, call or travel to DC. I ask all of you to help with at least the calling part. I will post intructions later on what we can do.
The first breakout session Charlie and I went to was for Type 2 issues. Although it was very informative, I think I teared up three times and Charlie thought he was going to be sick. We may have been the only newly diagnosed family in there. They were talking about issues that Charlie and I are years away from like school, but hearing all of it really overwhelmed us. As one mom put it, "we are still living in Disneyland" meaning that we are a bit in denial. I know we are and its just going to take a while. We are trying to make our life as normal as possible, but when it comes down to it, it just won't be like everyone else's normal. Everyday will come with twice daily respiratory therapy, twice daily stretches and exercises, daily therapy appointments (PT, OT, AT), twice daily medicine giving, daily nutrition and caloric intake analysis. All this is going to take a while and we know that. We are just introducing a little more and have come really far since January we think. We will be lucky to have the healthy times and have to be well prepared for the sick times and all the surgeries - which may not come this year or next, but they will come eventually. Its just the disease taking its toll and we have to be prepared. I am convinced that we need a mentoring family but they are all so busy, too!
The grandparents went to their special session and I heard it was very well worth it as well. Just as many grandparents there as parents. Really shows the support that each SMA family has. The afternoon breakout sessions were on orthopedic mgmt (which went WAY over my head since they were talking about spinal surguries to correct scoliosis), a session on aquatic therapy/assistive computer technology, a toy adaptation session (where Charlie dismembered a bubble-blowing cat so that Maya bean can blow bubbles easier). The same family with the 19-month old was in the toy class so we asked if we could put Maya in her wheelchair. It didn't take but 5 seconds for Maya to figure it out and she was wheeling herself.
The company that makes Standing Dani (a standing wheelchair) was there and had all sorts of trials. Maya got in the mobile stander and had a great time. Like watching her walk. She used a joystick for the first time. We got all of it on video. It's long, but well worth the watch. She was running into EVERYTHING. I don't think anyone can expect a 17-month old to "drive" so I think she did pretty good for the first time.
We finished the night out at the banquet where Maya was in rare form. It was nice, too, because speaker #2 was sitting at our table and so was the rep from MDA (Muscular Dystrophy Assoc). They got to see many head throws, throwing food, paper, toys on the floor, and to top it off, Maya eating ketchup with her bare hands. Fun stuff.
Saturday
This morning's general session was extremely beneficial. They had a panel session. First with some teenagers, then with young adults. I am not sure why I had a hard time keeping my eyes dry, but I really was so emotional. And not in a bad way - totally good things. To see what all these people have done with their lives was an inspiration to me that we cannot focus on Maya's can'ts, but all of her can's. She can do anything she puts her mind to, adapted yes, but anything her heart desires. Lesson learned from this meeting. The types don't really mean anything after meeting all the people this weekend. We met and listened to some Type 1s who were in their 30s, married with children and heard of Type 2s who used to walk into their teens! It didn't make sense so now we know not to get so hung up on the "type" thing. Every single SMA child is unique. EVERY single person. We did not meet two kids/adults with the same circumstances. Just within type 2, I think there are like 50 different types.
Breakout sessions were a little more manageable today. Morning session was about nutrition and afternoon and about therapy, stretching, equipment tips. Charlie and my mom went to the session on keeping your lungs healthy and what to do in sickness and surgery situations. Thanks to a migraine, I self-nominated myself to catch a nap with Maya and Charlie while the grandparents attended the last session with the researchers.
We went to dinner at a nice restaurant by the water, finished the night out by bumping my head and practically giving myself a concussion. I am still bruised and cannot comb my hair on top!
Sunday - Happy Father's Day!
This morning we had a general session and panel. The first was providing an update on the latest research (things they recently found out about SMA and SMN protein). It sounds like they have come a long way since 5 years ago. The second panel was the most interesting to us. It was about stem cell therapy, the latest and greatest drugs in the works, and gene therapy. Honestly, I am still a bit confused on the difference between gene therapy and stem cell, but I think in gene therapy, they are actually injecting the missing SMN1 gene, whereas stem cell, they are injecting "generic" stem cells and these cells will make motor neurons (not the missing gene though). The last one was about clinical trials. We ducked out of that one early and got ready to leave for the airport. We really enjoyed the conference and glad that we were able to go and take Maya and the grandparents. Although things got emotional at times, it was very informative and we came back with good notes and made some friends.
Maya woke up with a cold and slowly as the day went on got worse and worse. When we got home we headed to dinner to take out Paw Paw Bill. Maya was just getting worse. No fever though so that is good. That night I could feel the congestion when she breathed. We started a nebulizer treatment without the albuterol. Maya wimpered when she saw the machine and mask. We have to look past that now since this is just going to help her. We put the mask below her chin like we've done in the past so that at least she would get a steam bath. She enjoyed watching Dora during the treatment and we were able to get over 20 minutes in! We literally just got our cough assist and suction machine, but we didn't have time to put it together, read the instructions, etc, so I just had to use the good ole blue ball for her nose - of course she hated it! When we put her to bed, she was at 99.9. Gave her Motrin just in case it went up and put her to bed (and me, too). Maya tossed and turned for about 3 hours before we decided to put her back in her crib. She slept just fine afterwards.
1 comment:
Sapna thanks for all of your posts. I feel like I know so much about what is going on with sweet Maya even though I only see you guys once a year. I still pray for her and you guys regularly and am happy to hear you are all doing well.
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