Ultimate Olivia Update

These are some of my favorite pictures of Olivia from our photo session with MckMamma.

We're nearing the point where we are not really concerned with Transplant related complications (I knock wood as I type this so please knock wood along with me as you read). For the most part Olivia is healthy. She gets the occasional cold or sniffle but she's well on her way to being caught up on all her vaccines. Her immune system is no longer compromised. Some of you from Washington state may remember Olivia's constant and chronic runny nose and sinus issues. I'm very happy to share that those are over.



Olivia also has normal bowel movements now. Prior to transplant Olivia had several loose bowel movements a day (as is common with children with Sanfilippo syndrome) and then she was dealing with the challenges of being on IV nutrition and chemotherapy and then she had some post-transplant virus issues but now we're very happy she has normal poop!



Olivia is off of all of her transplant related medications. She takes zyrtec and singular regularly for allergies. She also gets nebulizer treatments twice a day for reactive airway disease. Doctors at Duke told us that the reactive airway disease maybe the result of one of the chemotherapy medications that Olivia received during transplant. I think that it may have been diagnosed at Duke but that it might have been something that Olivia had prior to her transplant. Technically asthma cannot be diagnosed until a child is 5 years old but Mike had asthma as a child and at one point before Olivia was diagnosed with Sanfilippo syndrome she was having some asthmatic symptoms along with a sinus infection and she was put on an inhaler for a month.



Olivia is also still experiencing some muscle weakness in her trunk and lower legs. We think this is the result of some of the medications that Olivia took during transplant. This weakness was initially caused by the high doses of steroids that Olivia took during transplant. Sanfilippo syndrome is slowing muscle recovery but the geneticist thinks that Olivia's muscle tone and strength will continue to improve. She's getting stronger every day, she's become quite a climber and she loves to run. We have started venturing to the tennis courts in our neighborhood so she can run around but still be safely contained.



We are at a point now where Olivia seems to have survived the transplant process but now we're just not sure how much it will help lessen or mitigate the effects of Sanfilippo syndrome. We met with a new geneticist last month at UNC, Dr. Muenzer, he is very familiar with MPS and will be Olivia's primary physician in the UNC hospital system. Dr. Muenzer was so comfortable around Olivia which immediately won me over. Olivia had been seeing Dr. Escolar at the Program for Neurodevelopmental Function in Rare Disorders (NFRD) at UNC. Dr. Escolar and the NFRD are moving this summer to the Children's Hospital of Pittsburgh of UPMC (University of Pittsburgh Medical Center). We're hoping that Olivia will continue to be seen by Dr. Escolar on an annual basis but we need a geneticist close by as well.



Dr. Muenzer is not as familiar with treating children with Sanfilippo syndrome post transplant simply because there are not very many. He did assure us that we seem to be on the right track and is assisting us in getting appointments finally scheduled for another sedated hearing test.



Olivia's hearing test from last summer was inconclusive but given the history of hearing loss with patients with Sanfilippo syndrome she recommended that Olivia be fitted with hearing aides. We've had one challenge after another trying to schedule an appointment to get Olivia's hearing aides. Our insurance company recognizes UNC as an in-network provider but Duke is an out-of-network provider so it's been a giant insurance headache! We've decided to go to UNC and start over with another sedated hearing test and then move forward from there with UNC doctors.



In general Olivia seems to be a little more "with it" lately, more aware, more engaged. Dr. Muenzer couldn't tell me if this was the result of improved cognitive abilities or the result of some of the interventions we're using. I guess in the end it doesn't really matter as we focus on taking it all one day at a time.



Olivia continues to love school and IEP meetings are getting much easier. I'm working with the Army Community Service program on post to develop a seminar for "first-time IEP parents". We've had 2 IEP meetings in the last 4 weeks. The first was an annual meeting where we set goals for the coming school year. Olivia's teacher and I used the Birth-to-Three guidelines to determine where Olivia was cognitively and make appropriate goals. We also focused heavily on self-help skills and incorporated those as goals. Our second meeting was a transitional meeting as Olivia will be transitioning from Pre-K to Kindergarten in the fall. Olivia will be in an ID classroom next year (Intellectually Disabled). Olivia attended the meeting with me so that she could meet her new teacher and tour her new classroom. We're hoping that Olivia's 1:1 aide will be able to make the transition with her but aren't sure if that will happen. I think the class and new school will be a good fit for Olivia.



That about sums it up :) I hope you've enjoyed the pictures as well as the update!

Happy Anniversary

This past weekend Mike and I celebrated one of our anniversaries. We get two. We hadn't ever expected to celebrate the first--Mike was getting ready to deploy to Iraq, I was in grad school and was without health insurance, we went to the courthouse in Colorado Springs. I don't remember what I wore, I think we went out for lunch to celebrate but I couldn't tell you where we went. We think of that as our "pretend" anniversary. Mike went off to Iraq and I continued grad school in South Carolina. We were so good at "pretending" that I filled my tax return as a single person and Mike filled jointly so we ended up being audited and had to refile. Our pretend anniversary was almost 8 years ago.

We celebrate our real anniversary on the anniversary of our wedding. The day we said our vows and promised to be true to eachother in good times and bad, in sickness and in health. We've had some good years and some bad. Despite this being our 6th official anniversary it is only the 2nd that we've ever actually spent together. We never anticipated that sickness would be of our child and I think that seeing our baby girl sick has been 1000 times harder than if it were one of the two of us that was sick.

I remember we were excited to plan the ceremony itself. We laughed at how appropriate the first reading was from the Book of Ruth---"For whither thou goest, I will go; and where thou lodgest, I will lodge; they people shall be my people, and thy God my God" (Ruth 1: 16). So far that's included Oklahoma, Georgia, South Carolina, Colorado, Washington, and North Carolina. It's been sketchy apartments and beautiful resort communities.

We celebrated our anniversary by taking a weekend trip to attend the wedding of the best man from our wedding. My mom flew from Texas to North Carolina to spend the weekend with the kids while we flew to Texas to attend the weekend. It was a quick trip but we had an awesome time. It was so much fun to just hang out with the guy I fell in love with. I love you Babe!

A Birthday Bash

Peter was recently invited to his very first birthday party. One of Peter's friends in our neighborhood was turning 2. Peter and Kyle get along very well and they have had a few playdates together. The party was on a weekend so I took Peter while Mike got to spend some quality time with Olivia. Leading up to the party I had been concerned about Peter's behavior. Peter is slightly spoiled, it's something we're all aware of and we're working on. The majority of the time Peter is super laid-back, a very go-with-the-flow kid, but when he does decide that he wants something and he doesn't get it he can throw quite a fit! The thing is these tantrums happen very rarely. I was worried that Peter would take one look at Kyle opening all the presents and he'd yell "MINE" and lunge towards the gifts.

I tried to involve Peter as much as possible. We took a special trip to the store to pick out Kyle's birthday present. It was tough but we stayed on track and chose an appropriate present for Kyle. Peter chose a Mickey Mouse Clubhouse Submarine toy for the bathtub and a book.

The day of the party Peter helped me wrap the present, all the while discussing how much Kyle would like his birthday present. Peter was quite proud of the wrapped gift. When we got to Kyle's house he insisted on carrying the present into the house all by himself. Peter was a little thrown when the door to Kyle's house was opened by Kyle's dad who was holding a camcorder and a house full of people. Peter behaved beautifully at the party. He proudly gave Kyle his birthday present instead of being forced to surrender it upon threat of time out (which is what I was sure would happen). He waited patiently for his piece of birthday cake. He played nicely with the other toddlers there. At the end of the party I told Peter to tell Kyle's mom thank you and Peter decided to give her a big hug. I told Peter to give Kyle a "High 5" and say goodbye. Peter and Kyle said their goodbyes and then he ran back to give Kyle a hug. So sweet! As we left with Peter's treat bag I asked Peter if he had fun and he happily said that he did have fun and he liked playing with the toys. Peter was so well behaved I feel guilty for ever doubting him.


Checking out the Diego Invite....

Signing the card....

Wrapping the present.....

Don't forget the bow.....

Really I'm not sure who's more proud, me of my little guy or Peter of the present!


Ready to Party

Happy with the Treat Bag

All American Week

This past week we were very busy experiencing our first All American Week. Mike unit is part of the 82nd Airborne Division. The 82nd Airborne Division was created in 1917 and since it's members came from all 48 states it earned the nickname "All American". During our time at Ft. Bragg we've learned that people take being in the 82nd Airborne Division very seriously. All American Week was basically a week of activities designed to promote esprit de corps---picnics, soccer games, tug-of-war, volleyball games, baseball games, basketball games, wrestling, combatives, shooting demonstrations, paracuting demonstrations, etc. The week began with a division run that included over 20,000 soldiers from the 82nd Airborne Division. It was a 4 mile run and they ran at a pretty quick pace but there were so many soldiers participating that some of them haden't even started running by the time that the guys in the front finished.



Here's Mike leading his battery in the division run.



Our Battery FRG (Family Readiness Group) sold hotdogs during some of the intermural games. Peter was quite content to "supervise" and eat his way through bags full of potato chips.



The Division Review was quite impressive.









"The 82nd Airborne Division strategically deploys, conducts forcible entry parachute assault to secure key objectives for follow-on military operations in support of U.S. National Interests."
(Mission of the 82nd Airborne Division)

2011 Rainbow of Heroes Recap

The 2011 Rainbow of Heroes Walk was a huge success! We have to begin with a huge THANK YOU to those of you who were able to donate to the Duke Family Support Program on behalf of Operation Olivia. Unfortunately my trip to New Orleans coincided with the Walk of Heroes so I wasn't able to go. When I discovered the double scheduling I came very close to canceling my trip but Mike insisted that I needed a break. He assured me that he could handle it and he took both kids up to Duke for the event. This was Mike's first time going out anywhere by himself with both kids. I am so impressed! He even took the camera and was able to get some great photos of some of our Duke Family!

Olivia and Ms. Marion (our Social Worker)


Someone had a bit of a meltdown.


Someone else is laid back and ready to go with the flow!


Jayne and Olivia have always had a special relationship.


Dr. Paul and the kids. I think that it's obvious that Olivia knows that the day is pretty much about her and Peter is tired of not being the center of attention.

Dr. Paul will be moving to Pittsburgh this summer as the newly appointed Chief of the Pediatric Bone Marrow Transplant Division at Children's Hospital of the University of Pittsburgh Medical Center.



Balloon Release at the end, Peter didn't want to release.


Thank you to all of our friends and family for their support and a HUGE KUDOS to Mike for taking on the Rainbow of Heroes walk solo.

Mini-Update

I know I've been a little MIA lately. My trip to New Orleans was followed up with a visit from my Mom and a quick weekend trip for Mike and I as we headed to Dallas for a friend's wedding. Mike has also been very busy at work and I've been very busy with some other volunteer obligations. In the mean time I'm so excited to be able to share a sneak peak of some photos from our family photo shoot with MckMama (remember this post: http://mikelaurieandolivialeiva.blogspot.com/2011/03/click.html I can't wait to share more but piles and piles of laundry await.

Momma Needs a Vacation/NOLA Escape/Jazzfest/Reunion

Last week I was in the grocery store. I looked down at my list and noticed this...............



Obviously I was interrupted while writing the word 'crackers'. But while I was in the grocery store all I could think was hmmmm, I don't think they sell that at this grocery store.

Fortunately respite was in sight. I left Mike and the kids and flew to New Orleans for a long weekend. The trip took quite a bit of coordination--but with the help of one of our regular respite care providers Mike and the kids managed to do just fine. I had typed up pages and pages of instructions, I took pictures of Olivia's school and the carpool lane to give to the sitter who would be picking her up. I prepped activities for the kids and meals for Mike to cook. I went a little overboard on the prep.

I was very stressed about leaving the kids but then I discovered an express spa during my layover. I thoroughly enjoyed an overpriced pedicure while waiting for my flight and started to relax.



I arrived in New Orleans in time to meet my brand new niece and Goddaughter, Miss Sophie Jaye Leiva. She's precious!





It was the perfect way to start the weekend!

I haven't seen most of my sorority sisters in years. Some of us talk fairly often via facebook but for the most part we're all busy with our own lives. One of the negative aspects about moving often and living in so many places is that I don't get a chance to develop close friendships with people. I didn't realize how much I missed that! This weekend I remembered that these girls know me, they know the intricacies of my character, they were there as I was growing up. I remember graduating from college and feeling so completely alone. I had roommates for 4 years, I loved living with a group of girls! This past weekend we slipped right into old routines and I loved it!

One of our very regular routines was stopping by the Daiquiri shop.



The daiquiri's were purely medicinal, I had to nurse my injured hand. I burnt my hand badly on the lawnmower before I left to go out of town.



We experienced fantastic food--Crawfish Monica, Stuffed Mushrooms, Trout, Shrimp Flautas, Crawfish Bread, Empanadas and equally fantastic music--Bonerama, Better than Ezra, Kermit Ruffins, Willie Nelson, Arcade Fire, Marcia Ball, Allen Toussaint, The Strokes, Ms. Lauryn Hill, Jimmy Buffett and The Coral Reefer Band.

The weather was gorgeous but it was hot. For some reason I decided that I had to have a fedora and I sported it all weekend!









We headed out to some of our favorite old college bars and we found a few new places.



I did miss Mike and the kids very much but the sitter and Mike were great about sending me text message and photo updates. How could I worry when I know these sweet sleeping faces are so content!



On Mother's Day we headed to brunch at Court of Two Sisters.



We took our time shopping and walking our way through the French Quarter. It was such a treat to be able to take our time and really enjoy each others company.

We ate lunch at Commander's Palace, a New Orleans institution with fantastic food and even better service.



It was a wonderful weekend, one of the best weekends I've had in years!