An Overdue Update

I've started a dozen blog entries over the last couple of weeks but then stopped midway through because I just didn't have the time to deal with the emotional release that accompanied the entry. For me blogging has become more than just sharing pictures and family anecdotes, it's become a part of the way I process and work through parenting a child with special needs. Over the last couple of weeks I have had a really hard time dealing with the reality of Sanfilippo syndrome. So many random thoughts rattling around: Now that it seems like Olivia is on the other side of the transplant process I seem to be experiencing a big rush of emotions related to that process. I am remembering where we were this time last year, this time 2 years ago, etc. I can't believe that I lived with Olivia in a hospital for 3 months. Peter is now the same age that Olivia was when she was diagnosed. To be honest Olivia was more advanced than Peter is in some ways. She was definitely better at expressing her needs and wants verbally than Peter is. Olivia would walk into the kitchen and tell me what she wanted where as Peter is more likely to get it himself. Things seem to come so easily for Peter. As a parent I feel pretty isolated here. I know a few other parents of children with special needs but I can't say that I'm really friends with any of them. Blah, blah, blah. Even I'm tired of my rambling. Now for the promised update, via pictures..... Peter went to daycare for the 1st time! It was just for a few hours while I had a doctor's appointment but he LOVED it. We are blessed to have an awesome childcare center right in our neighborhood but there is a long waiting list and hourly care appointments are hard to come by so we're still trying to figure out how to work it all out.



Olivia has started taking a small dose of melatonin before bed. It has made a HUGE difference. She is sleeping straight through the night from 8pm until 7am and then often takes a short 30-60 minute nap. Mike and I love taking turns snuggling with her for her weekend naps.



Peter and I try to meet up with Mike for lunch every couple of weeks. Peter loves to visit Daddy at work. He also enjoys trying to eat slices of Pizza that are larger than his head!



Olivia continues to love our swing set. She's recently started to say "hi" and "ball". Her smile is such an encouragement to me!



Peter had an unplanned play date with a friend. Apparently I became a Grandma, to twins :)

How Can I Help?

After I post about us having a particularly rough day or couple of weeks I often get a string of emails from people asking about how they can help. My recent post about my fear of the Internet prompted a string of these calls, texts, messages and emails. When you're in the midst of something and someone asks what they can do to help it can be difficult to step outside the situation and see where their time and efforts can be best spent. This is particularly challenging for me! Sunday mornings when we're scrambling to get out of the house for church and kids are running around half naked and I'm busy trying to pack the diaper bag, find church appropriate attire, make breakfast, get Olivia's meds together, find matching shoes, wash faces, brush teeth...... Mike will politely ask what he can do to help and I always snap back in a very impolite way...."PICK A JOB, ANYTHING! Jump in! Step up! JUST DO SOMETHING!". Sunday mornings are not a peaceful time in our house.
But I digress.

People ask how they can help Olivia, help with Sanfilippo syndrome, help our family. Here's a list of several different things, hopefully you will be able to find an opportunity that matches up with your interests and availability!

• SHOP! The mom of our friends, Waverly and Oliver has a friend who is a thirty one consultant Thirty-One. They sell great purses, totes, wallets, organizing items, etc. Super cute stuff, great prices and it can be monogrammed. 25% of all of the orders for my "party" will be donated to Ben's Dream (a family non-profit funding Sanfilippo research, specifically Dr. Fu's gene therapy research). This is a great way to get some cute new items/gifts and help us get closer to finding a cure.
  Here's the link http://www.mythirtyone.com/SarahGiere/, be sure to choose the party for Shannon McNeil. The orders will all be submitted at the end of the month, so your items will arrive in April. If you have any questions please let me know! The deadline for orders is 3/20/11 so place your order soon!


• DONATE! Fundraising has begun or the Duke Rainbow of Heroes Walk. The Rainbow of Heroes Walk is the major annual fundraiser for the Duke PBMT program. Money raised goes to support families and patients going through transplant. Here is the link to donate http://www.rainbowofheroeswalk.org/modules/gifts/donate.php please don't forget to select OPERATION OLIVIA as your team.



• BABYSIT! Olivia has frequent doctors appointments and Mike's schedule is such that I cannot rely on him for help. It is a challenge to manage both kids and have an intelligent conversation with a medical professional at the same time. For many of her appointments Olivia needs to have certain tests or xrays done and it's difficult to balance the needs of both kids.



• PRAY! Keep us in your prayers. Specifically pray for me to have patience, pray for more awareness, pray for a cure!



• SHARE! Share or story! Talk about Sanfilippo syndrome. You can raise awareness for Sanfilippo syndrome with each person you share our story with.

Hope you're able to find a way to help!

Carnival

I am feeling a bit better about venturing back towards the Internet. I have been very homesick for New Orleans lately. Some years the entire Carnival season goes by and I don't even think about it but this year I really missed Mardi Gras. Before living in New Orleans I thought that Mardi Gras was an "R" rated affair but I was presently surprised to learn that it's so much more! There's so much culture and tradition! Neighborhood pride, community spirit! Mardi Gras in New Orleans is a family affair. My favorite place to watch the parades was uptown, close to campus. Fraternities would get kegs and haul couches to the median on St. Charles along the street car route (called the neutral ground in New Orleans). Families would set up ladders along the curb with little benches built on the top. The ladders held their place and then when the parades started they would put their children into the little seats at the top of the ladders so that the kids were able to catch the good stuff from the floats. Now that I'm a parent this entire practice seems a little crazy but the kids were safe and secure. They had the best view! The ladders could be a little annoying sometimes but they were sacred! No one ever messed with the ladders!



I also have to point out the entire 4 years I lived in New Orleans during college I never once saw anyone flash during any of the parades Uptown! It really was very family friendly!

In the spirit of New Orleans I have to share one of my favorite finds.....Dirty Coast. It's a local New Orleans company that makes cute and clever tshirts full of local flavor! They also make this beautiful door mat, a replica of the water main covers in New Orleans.

Afraid of the WWW.

I feel like I haven't blogged in ages. We've been busy but to tell you the truth I've been a little afraid of the computer, not really the computer but the whole world wide web.

During Mike's first deployment to Iraq in 2003 I was going to grad school in South Carolina. Mike deployed out of Ft. Carson, Colorado. I was busy at grad school with friends and classes and work and I felt a world away from Ft. Carson and all things military. Deployments were different then, I received emails from Mike fairly regularly but we spoke on the phone only a handful of times. I happened upon a listserve moderated by a veteran from the unit that Mike was serving in. Initially I loved all the information! But then when the unit started to experience some casualties the listserve that I had loved so much as a source of information became a sort of email torture. I dreaded logging into my email account and seeing casualty notices and obituaries, I unsubscribe from the listserve. I also didn't watch the news for 2 years, I would turn on the Today Show after they'd run through the daily headlines, my roommate and I watched endless episodes of Law & Order, American Idol, and Friends.

When Olivia's Developmental Pediatrician at the hospital in Washington told me that he suspected that Olivia might have a type of MPS he told me not to spend too much time looking online. He was sure that Olivia did not have Sanfilippo syndrome and he didn't want me to be frightened by what I read online. I didn't listen to anything the kind doctor said, I went straight home to google. The doctor was completely right, hours later I was sobbing in front of the computer. I shut down the computer and decided to listen to the doctor's advice. It turns out he was wrong but the damage was done, I had been scared by what I read and I was weary of the information I found online about Sanfilippo syndrome.

It's taken me almost 2 years to work my way back to the Internet as a source of information about Sanfilippo syndrome. There's a private facebook group for families and individuals dealing with MPS. Initially I fell in love with this group, so much support, so much information! But the last two weeks have been awful. Three beautiful little girls with Sanfilippo syndrome died within 4 days of each other, they were 12, 13, and 15. I didn't have the pleasure of knowing these girls but they are part of our small Sanfilippo community and their deaths are felt deeply.

I'll be back but it is taking me some time to process it all.