Wheels

Yesterday I picked out a wheelchair for my 4 year old little girl. I thought the process would be a lot more emotional but really I feel like I'm in a good place with this decision. Of course it surreal that I actually picked out a wheelchair for my daughter but the process itself went well. I'm excited about what the wheelchair will bring to our family and I'm looking forward to it's arrival.




This all started several weeks ago when we were at a routine visit with Olivia's orthopedic surgeon. We continued the conversation with our developmental pediatrician and physical therapist. Olivia has outgrown most regular size strollers, she's too tall and too heavy. While she does enjoy walking with us she is starting to fall more often and you have to maintain hand contact with her at all times or she will run off. We've been making do by just carrying her but she's getting pretty heavy. And when it's just me with the kids I have a difficult time managing both kids at the same time (I'm obviously referring to more difficulty than the average person might experience with an almost 5 year old and a 2 1/2 year old). Olivia likes to be held but she also likes to bend over or reach for things and when you're carrying someone who is almost 50 lbs and they decide to reach for something it throws off your entire center of gravity (and does a number on your back). We all decided it was time for a special needs stroller or push chair of some sort.

Yesterday the medical equipment rep met me at Olivia's physical therapy appointment. We discussed what we were looking for and the medical equipment rep brought 7 different examples of different types of push-chairs/wheelchairs but really to me they are all wheelchairs. I learned that there really is no such thing as a special needs stroller, it's basically a wheelchair but it just looks more like a stroller. After much discussion we settled on the Convaid EZ Rider (pictured above) but in light purple. It seems very durable and Olivia climbed right in and enjoyed sitting in it. She was quite pleased with herself and looked very comfortable. It folds up nicely and once folded is similar in size to a larger umbrella type stroller. There are several options for attachments and accessories and we will be getting a tray attachment and a few other little things. The medical equipment rep was very nice and was quite taken with Olivia. When he walked in she politely shook his hand then climbed right up into one of the chair samples. She even gave him a few hugs. It was also nice to have Olivia's physical therapist there to help. She has been working with Olivia for almost 18 months and she knows Olivia very well. Even though we already have the script for the wheelchair the process takes a long time. The medical equipment rep told me we could expect it to take 3-4 months!

Mommy-Olivia Day

Someone didn't have school today and I really enjoyed spending time with her today! Peter was here with us but he is pretty good at keeping himself occupied so it really felt like it was just me and Livey. And she's growing up, I call this her slightly-shy-big-girl smile. The one that says yeah mom, I'll indulge you for one picture but then I've got things to do and people to see.

Click...

take a pic! If the words to the camera song from Go Diego Go are running through your head then you know you have a house full of toddlers.

Years ago my friend Elena introduced me to MckMama. MckMama is a Christian mom of 5 who is also a photographer. She has a hugely popular blog here: http://mycharmingkids.net/. Anyway I've read Mckmama's blog for years, I feel like I know her. I'm constantly suprised at how many other friends of mine read MckMama's blog. I've even mentioned her before on my blog here: Seriously!.

I am so excited to share that we will have a photo session with MckMama herself in just a few weeks! I love her pictures, I really like the unique perspective, I love that kids look like kids in her pictures, not staged models. I am cautiously optimistic that we might get a few good photos from our session. As the reality of Sanfilippo syndrome becomes more a part of our lives we're realizing the increased importance of capturing these memories. Here's a link to her photography website: http://www.jennifermckinneyphotography.com/

Now enough links....I am starting to worry about what we're all going to wear. I think we might do jeans and a solid color top for the family shot but I want to get a few of the kids by themselves and together. I prefer the pictures to be in color so I'm okay with the kids wearing colors that coordinate with each other. Our photo shoot will be outside. I feel like I want something really bright and cheerful, I haven't seen anything I really love at any of the usual places I shop--Gymboree, Land's End, Gap, Old Navy. Does anybody have any suggestions? It doesn't have to be fancy, I tried looking on Etsy but got a little overwhelmed. I also need it relatively quickly as our photo shoot is in under 2 weeks!

Duke Day

Olivia had an ENT appointment at Duke this week. We do have a local ENT but Olivia needs to have another hearing test done and one of her ear tubes fell out last month and since those procedures require sedation we prefer to have those tests done at Duke. When I scheduled our appointment with the ENT at Duke I gave Olivia's PBMT nurse practitioner a call to let him know we would be at Duke so he scheduled an appointment for us in the PBMT clinic just to check how Olivia was doing. Mike was able to take the day off from work so that he could help out and it was wonderful to have his help!

Mike and Peter enjoyed playing in the waiting room during our audiology appointment. As expected they were not able to get much data from a traditional audiology exam so they will do another exam when Olivia is sedated.

**FYI--Mike is riding a whale that makes a whoop whoop sound according to Peter**



The ENT confirmed that the tube on Olivia's left ear did indeed fall out (I did give them the tube so I'm not sure why there was any question about this, I found it stuck in her hair near her ear). We will schedule to minor surgery to replace the tube and perform the hearing test in a couple of weeks.

After our ENT and Audiology appointments we headed up to the PBMT clinic. It was strange to see an entirely different crew of post-transplant kiddos. We were in their shoes 20 months ago, I still cannot believe that we made it through that crazy experience. Everyone was so impressed with how well Olivia is doing. She had a blast running all over the 4th floor of the Children's Health Center. For me it is such a refreshing and rewarding experience to see the PBMT staff at Duke. They know and love our family and we love them all! Olivia is also super familiar with the routine at Duke even though it's been months since we were there. She happily stands STILL on the scale all by herself. She sits still while they get her vitals. She sat quietly on my lap and didn't even flinch when they did a blood draw (and the lab tech is always able to get draw in the first try). Olivia was a rock star! She also received her first vaccinations post-transplant. She should have received these months ago but her local doctor has hesitated. Olivia got a total of 4 shots and she didn't even cry! The day of visits did tire her out though and she enjoyed a quick nap on my lap. Love the cuddle time!



Peter kept himself busy in the exam room. Future occupation maybe? Notice Mike in the corner reading work emails but fortunately there were very few work calls!



The kids were really excited to get home and ditch us for their toys. Peter has recently started reading to Olivia, so cute!



Several people told us how beautiful Olivia is and I can't disagree! Love that happy face!



We also had another appointment at the eye doctor this week. Olivia was giving me kisses in the waiting room. XXOXO!



Overall we love our Duke family and are blessed to be so close to great medical care. This makes the relocation cross-country to Ft. Bragg worth it!

Celebrity look-a-like?

Is it me or does Peter



look a little bit like Ronnie (from Jersey Shore)?


Something about the eyes or the eyebrows? Peter is making his best "tickle monster face", I have no idea what type of face the Ronnie kid from jersey shore is making but I don't think it's his tickle monster face....

Hi

Olivia has started to say "hi" or "hey" with some regularity. I would say that she does this 2/5 times. Don't you love that, 2/5 times, it's from one of the many developmental tests that we fill out when Olivia has an appointment with the geneticist or the team at UNC. I was trying to catch it on video but I had pushed the wrong button on the camera and ended up taking a still picture instead.



I'm on a mini-mission to capture Olivia on video more often. It's been a frustrating process for both of us as she never wants to perform when I pull out the camera! We have a few videos of her talking. Here's one of her when she's about 18 months old using her sign language to ask for more jello. Makes me smile. I really wish things were still as simple as a mild speech delay!

Consignment

My first experience with consignment sales was the semi-annual sale in our neighborhood in Washington. Peter was a few months old and I was able to make quite a bit of money selling all of Olivia's old clothes. Olivia had a TON of clothes and I had saved everything in case we ever had another little girl. It took quite a bit of work to get everything ready for the consignment sale (cleaned, ironed, hung up, tagged) but I made enough money to purchase a gently used Maclaren double stroller, a britax single stroller, and a small slide/fort for our backyard and I still had a bit of cash left over. I was hooked!

This past weekend there were a couple of big consignment sales here in Fayetteville. I didn't sell anything this past weekend, I'm working on getting things organized to sell in another sale towards the end of the month. I did shop though and found some great deals! The consignment sale put on by a local MOPS group was extremely organized! And they allowed parents of children with special needs to shop the night before the sale was open to the public. Here's a picture from the sale website.



I'm pretty picky about clothes, but I did manage to find a couple of brand new Janie and Jack outfits for Peter that still had the original tags for 1/3 of what they'd cost in the store. I also got a few Izod and Gap polos for Peter.

I bought a lot of toys for Olivia. Peter and Olivia both love this fishbowl toy and played with it together for almost 15 minutes! That is a new record!



It can be difficult to find toys that Olivia is able to enjoy playing with that are durable enough to last. Olivia enjoys playing with toys that are geared for the 12-18 month child but those toys aren't necessarily built to withstand abuse from a 4.5 year old. She LOVES this shape sorter and has been playing with it all morning!



I bought several pairs of shoes for Peter. I've learned that Peter's feet seem to grow at least twice as fast as Olivia's and while I don't mind spending $30-40 for a pair of shoes that Olivia wears for at least 6-9 months it gets a little ridiculous with Peter. I may have gone a bit overboard but Peter is just as excited about the shoes as the toys because he's really into taking his own shoes off and on lately. Each of these pairs of shoes was between $1 and $6 so I bought all of them for less than it would cost for a single pair!





If you haven't been to a consignment sale yet I recommend you check one out! Here's a link to a directory of kids consignment sales by state. Happy Shopping! http://www.kidsconsignmentsales.com/seasonalsales.htm

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.