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!
