Matt has written a book for Waverly & Oliver. ALL of the proceeds will be donated to the National MPS Society for Sanfilippo research. Please watch this trailer for details about the book and consider sharing it with your friends. Pre-orders for the book will begin on May 8th. Thanks!!
Monday, April 30, 2012
Monday, April 23, 2012
Waverly is having a very difficult time. The past 6 weeks have been rough and the past few days have brought many more changes. She is still crying/whining almost constantly. Last week I took her in to see our PMR doctor, hoping she would be able to give us some answers. Waverly's walking is getting worse. She is crouching as she walks and seems to be in pain with each step. The doctor agreed that Waverly looked very uncomfortable, but her range of motion was still as it was 6 months ago and there were no signs of any problems that she could see. She suggested we consult with neurology and genetics (we see both within the next 3 weeks).
To keep things interesting, she has started having more difficulty swallowing. I have been able to give her textured foods - tiny pasta noodles in sauce, soups with veggies, rice & beans. She simply cannot eat those items anymore. This become quite clear when she threw up her dinner, after gagging on some star pasta. I have been back to making simple purees and we started giving her Pediasure to keep her calorie count up.
In addition to the constant crying, she is beginning to look more "vacant". I am finding it more difficult to get good eye contact and I feel like she is often looking through me. Last night after we put her to bed, I heard her thrashing around in her bed. I went in to lay with her and she was so upset. After watching her for a few hours and doing some research late into the night, I think she may be having seizures (very common in children with Sanfilippo). I am going to record some of the behaviors tonight to show our neurologist in a few weeks. I hope after meeting with him and having an EEG done, we may get some answers.
I feel like I am constantly guessing at what it could be, trying to find an answer. Ultimately, I know it is all Sanfilippo related. We can still treat some of the symptoms of the disease and alleviate some of the pain/discomfort she is experiencing.
I was reminded once again last night just how awful this disease it. And beyond the pain I feel in watching it slowing take my children away from me, it is a horribly painful experience for Waverly & Oliver. Watching her last night - eyes wide open staring at me desperate for help, body in constant motion unable to settle, thrashing around her bed her body exhausted - I cried for her. I wish I could take away her pain.
We had a wonderful week. Our friends came down for a few days from Boston for a visit. We met a few years ago, brought together by the shared diagnosis of Sanfilippo. We clicked, forming a friendship beyond a common disease. I have learned that simply having a child with Sanfilippo in common with another mom does not a friendship make. There is something special in connecting with another mom on multiple levels, where we can discuss real life in addition to the true understanding of what we face.
Here are all of the kids at our favorite playground. Getting the kids to look for a photo is nearly impossible, but this was a great attempt.
Sunday, April 15, 2012
After Waverly was diagnosed, Matt and I were hyper aware of changes in her. We were constantly looking for regression. We both remember vividly when Waverly started picking up her spoon and putting the handle into her food instead of the bowl of the spoon. We would turn it over in her hands and after a few dunks in her yogurt, it was upside down once again. It was a small change, but it signified so much more to come.
Oliver has started to put the wrong end of the spoon in his food. This small behavior has produced so much emotion for me. I feel like he has crested the developmental hill and is beginning the awful journey downward. All of the gains we worked so hard to master are slowly going to begin to slip away.
I can see it in his eyes. He looks lost and confused at times. His eyes well up with tears and his lips pout out in a huff. He isn't sure why things are changing, but he is well aware that things are different. He has been acting out the past few weeks - very unlike Oliver. He is pushing and throwing himself to the floor in protest. I truly believe he is scared and unable to understand what is happening to him.
Waverly has been crying for weeks. Wandering in circles, pacing the hallways and crying. We have been through this stage before with her and I assure you it does not get easy, only more painful. Watching your beautiful little girl so confused with life around her that she weeps most of the day. We have a difficult time soothing her. She awakes each morning in tears.
I try to stay positive and enjoy these little things each day, but tonight a wave of sadness has knocked me over and I am being washed away. My heart aches and I am unable to save them. Sometimes I simply need to sit here in my sadness and allow it to impact me. To fight for a cure for Sanfilippo. To love Waverly & Oliver better tomorrow. To take each moment I have with them to heart and appreciate these glorious little lives I have been so blessed by.
Wednesday, April 11, 2012
Poor Oliver. His allergies have been awful this spring and I am cursing my love of all of those warm winter days. Last week was our spring break, so we spent a lot of time outside taking walks and playing in the yard. I think all of that fresh air was simply too much for him. He woke up Friday at 3am wheezing. After 2 nebulizer treatments and a call to our pediatrician, we ended up taking him to the ER. They were quick to get him into a room and evaluated. He was incredibly wheezy, so they gave him an hour long treatment and oral steroids. He was still tight, so they repeated the process and then sent us home. We have had to give him breathing treatments every 4 hours and continue the steroids. He is doing so much better. Now to find a good local allergist to help us put an allergy/asthma plan together.
Tuesday, April 10, 2012
Yesterday we attended the White House Easter Egg Roll. We have tried for years to get tickets via they lottery, with no success. This year we had some friends with connections give us 4 tickets for the 7:30 -9:30 time slot. It was an early wake up, but well worth it. The excitement of simply walking on the grounds of the White House was worth the 4:45 alarm.
Matt and the kids
Me and the kids
Waverly with the White House chef
Future President Oliver
Looking at his notes