Waverly has continued to be a solid sleeper. We have had 4 nights in a row of straight 8pm-6am sleeping. It is fantastic!! Unfortunately, she is still crying a lot. It is mostly in the evenings after dinner, but today she cried on and off for the entire day. I cannot figure out what is causing it. I know this type of behavior is common in children with Sanfilippo, but I am determined to find a reason. I hate seeing her cry. I don't think she is any pain, but I can never be sure since she is unable to tell me.
Saturday, May 29, 2010
Thursday, May 27, 2010
Wavey slept through the night again last night. (Can you hear the cheering coming from our apartment?!) Her teacher reported that she was much less weepy while at school and only started crying a bit before bedtime. I hope the crying dissipates, as she continues to get a full night's rest. We are hoping for another successful night tonight.
Matt and I were talking this morning about schooling. I received a message from someone asking about IEPs. She was immediately on the defensive and almost combative with the process, even though the child has yet to enter school. I remember that feeling. When Waverly started preschool, I felt like the school was the enemy and I was going to have to defend Wavey. And while it is true, that I am her advocate with the school, I quickly learned that the school is my partner in her education plan.
I understand that our situation may be unique. We live in an excellent school system with so many supports in place for the special education community. However, once I adjusted my attitude to view the school as part of Wavey's team, things seemed to move along much more smoothly.
I am not in the education field. And I certainly do not think it is perfect. But I do think the field of special education has changed drastically for teachers. They work so tirelessly for our kids. Their compassion and patience is astounding. They deserve our gratitude and appreciation.
We recently received word that Wavey's teacher is leaving for another school. She has been wonderful - communicating daily about Wavey's day, always available to talk, offering suggestions and always revealing her love for my little girl. She is really going to be missed.
Wednesday, May 26, 2010
Have we found a solution? Last night I suggested to Matt that we put Waverly in our bed for the night. She always ends up there anyway. She typically wakes up and wanders around her room, before we realize she is awake. I thought all of that wandering may wake her up, making it more difficult to go back to sleep. It actually worked!! She woke up twice in the middle of the night, but we were get her to fall back asleep. She slept until 7!!
I am trying the same tactic tonight, hoping for similar results.
Tuesday, May 25, 2010
Waverly is at it again. She woke up at 3:00 am yesterday and 2:00 am this morning. We tried to get her to fall back to sleep, but she wanted nothing to do with it. She was ready to go. Unfortunately, Matt and I were not. I am not sure if the medicine that seemed to work for about a week has already lost its effectiveness or if another factor is at work. All I know is that my poor little girl needs to sleep. She cried last night for hours, until it was bedtime. She is exhausted.
Crossing my fingers that Mister Sandman comes for a long visit tonight.
I was able to fly to Chicago over the weekend to spend time with 2 of my favorite people. My friends, Kamarah & Michele. We met in college, lived together out senior year, were in each others' weddings. They are also the ladies behind "A Hundred for a Home". Michele just had her first baby, so we all met to celebrate Judah. It was 3 full days of friendship - laughing, reminiscing, dreaming, crying, sharing, eating, shopping. It was fabulous!! I hadn't had time away like that for over a year.
And Matt was super Dad while I was gone. He took off of work to take care of the kids. He dressed them, bathed them, fed them, got them on the bus each morning, put pigtails in Wavey's hair, packed lunches, took them to the park, and tucked them in each night. He is a very hands on Dad, so he had done all of these things before, but never for multiple days. He did a superb job. I even came home to a clean house!!
Saturday, May 22, 2010
There is a Sanfilippo conference in the UK at the end of August. The MPS Society offered 2 scholarships to parents who would like to attend. I was selected!! I am SUPER excited to learn about the latest developments in research. It is going to be fantastic to be back in London for a few days. The city holds such special memories. I can't wait to explore and remember. It will do my heart good.
Wednesday, May 19, 2010
Thank you for all the suggestions. A friend came up with "For Waverly. For Oliver. For a Cure." I REALLY like it. We will be working on the tees and as soon as they are available for purchase I will let you all know.
I think that I have mentioned in previous posts that Waverly has been having a very rough few weeks. She has been crying - weeping - throughout the day and night. Her school even called last week, because they were unable to console her. For those of you who know Waverly, you understand just how unusual this is. She *never* cries. She has also been having some serious sleep issues. She has been sleeping for as few as 4 hours each night! I took her in to see the neurologist last week, hoping he might have some answers. Unfortunately, these are symptoms of the disease. He did prescribe a medicine to help her sleep. We have been adverse to putting her on anything due to complications, but we were all exhausted. She has been on it for the past 4 nights. She is sleeping solid for about 8 hours each night. Still not enough sleep for a 6 year old girl, but we'll take it. We were considering taking her in for a CT Scan, to be sure there wasn't any intracranial pressure, but she has been tear free all day.
This is the difficult part of Sanfilippo. Is she crying because she is in pain and is that pain so great it is interrupting her sleep? Or is she having sleep disturbances and she is so tired that she cries? I wish she could tell me what hurts or what is bothering her!!
As long as the crying doesn't return, I think we are confident she is pain free. Unfortunately, kids with Sanfilippo have SEVERE sleep issues. Compared to a typical child, Waverly's sleep pattern is anything but normal. It has never been as bad as it has been the past few weeks.
I have to remember that each time we settle into a routine and feel like we have things under control, a new change comes along to shake things up again.
Tuesday, May 18, 2010
Matt & I would like to have t-shirts made in honor of the kids. I know many of you have already or are going to participate in walks/runs for MPS. We thought a t-shirt would be a wonderful awareness tool. All of the proceeds we make would be given to the MPS Society for Sanfilippo research.
My question is, does anyone have any ideas for a logo or slogan? Brainstorm with me. I want something simple.
Sunday, May 16, 2010
I have spoken many times about my desire to be honest. This blog not only serves as a source to keep people updated on our family, but it is also a diary of sorts. A way for me to look back and remember - good, bad and ugly. Although having a positive attitude is essential in surviving each day, there are days when life and all of its pain gets to me. I want to share those moments, too. They are an important glimpse into this life of mine. They are real.
I sometimes encounter people who want to point out the positive in everything. It can be frustrating to feel like I cannot share from the heart, without being *corrected*. It seems as if sadness is sometimes looked at as a rejection of God's will and His love. I disagree.
I cannot pretend that I do not get angry - that I don't wonder WHY. I listen to other people complain and I want to stop them and give them a little perspective.
Yet at the same time, I know that my story is my experience. I cannot expect others to use my life as their gauge. I remember in the pre-diagnosis days, that small things felt so big. Hindsight is a powerful thing.
There are days when I no longer cry. My sadness is deep within me. The tears don't flow as easily as they used to. My mind wanders to the future - thinks about their funerals, how I will possibly be able to cope with such pain. It scares me.
This doesn't mean I have given up hope. That I have succumbed to the devastating disease and written off any chance for my children.
I still hope for a cure. I hope that it will not come too late. Waverly & Oliver have had an incredible impact on so many people already in their short lives. And I am excited to see what else they are going to accomplish.
Saturday, May 15, 2010
Matt created this fantastic video photo montage for MPS Awareness Day. Please take a few minutes to watch it. It is our hope for a cure.
Honor the many children suffering from this horrible disease - learn more about MPS at www.mpssociety.org - tell someone you know about MPS and how it has impacted your life - wear purple - make a donation to find a cure - say a prayer for the children and families affected.
Friday, May 14, 2010
MPS Awareness Day is tomorrow, but we celebrated today with the kids and their schools. It was *purple* day.
We went to Oliver's school this morning and dropped off purple frosted cupcakes for the preschool classes. We also gave each of the kids a goodie bag with a ribbon, *Ollipop* and purple M&Ms. I cannot even begin to tell you how incredible it was to walk into his school and see teachers & staff wearing purple and sporting purple ribbons. Even the kids in his class were wearing purple! His teacher wrote me this afternoon to tell me that they raised over $700 for the MPS Society in Waverly & Oliver's honor. Incredible!!
We then went to Waverly's school and dropped off cupcakes for her class, too. We were able to go up to her classroom and visit. The teachers and staff are SO nice. Once again, so many people were wearing purple ribbons in support of our kids. We were even asked to speak with the 3rd grade class across the hall from Wavey's classroom. The students wanted to know why everyone was wearing purple ribbons, so the teacher invited us in to speak with the students. It was a wonderful experience, although I have to work on my description of the disease so young children can understand.
Even Matt's coworkers are participating in MPS Awareness Day and wearing purple ribbons. (I can't take a photo of them - no cameras allowed in his office.)
There is still time to show your support and help raise awareness. TOMORROW - Saturday May 15th - is MPS Awareness Day. Wear purple, make a purple ribbon or just make an effort to tell someone about MPS and how it has impacted your life. We need your help, so we can find a CURE!!
Wednesday, May 12, 2010
Waverly has had sleep issues for years. Since she was 3 years old, she has been waking up in the middle of the night and coming into our room. When the sleep disturbances began we tried desperately to get her to go back to sleep in her own bed. At first, it worked. Then she started coming back out over and over and over again. We thought we should be firm (like the Super Nanny). Eventually, we grew so exhausted and frustrated that we would just bring her into our bed. Once we started doing that she would go right back to sleep until the morning. As long as we were all sleeping...
Then she started having difficulty falling asleep. We would have to stay with her until she went to sleep - sometimes up to 90 minutes each night. Thankfully, the doctors recommended we try Melatonin. It was a miracle supplement! All of a sudden she was asleep within 20 minutes. Life changing...
The past few weeks, things have been getting a lot worse. She is falling asleep okay, but she is getting up in the middle of the night and not going back to sleep. Her days are beginning at 2 or 3 am - way too early for a 6 year old girl (and her parents!). Because of her exhaustion, she is teary and weepy throughout the day.
The disease prohibits a lot of medication that people use to fall asleep and it inhibits certain medication from being effective. We are in the process of talking with her doctors and specialists. Hopefully, we can find something to help her sleep. We are all so tired...
Oliver's preschool class is celebrating MPS Awareness *week*. They are gearing up for the big day - Friday. Yesterday his classmates painted purple ribbons, so they can decorate their room and hallway in honor of Oliver and the other children with MPS. How amazing!!
Here is one more shot of Oliver from the baseball game. I was playing around with the editing features on the computer. He is such a cutie!
Sunday, May 9, 2010
I surprised Matt with a trip to WI to see a very dear friend and his family. I thought Matt deserved a weekend away and needed to take some time for himself. I packed up the kids and drove to PA to spend the weekend with my family. On Saturday night we took the kids to a minor league baseball game. The park was really nice and we had fantastic seats in the handicap section, so Wavey could sit in her stroller. The weather was not kind thought - it felt more like March rather than May. The wind was blowing full force in our faces, so we didn't last very long. Oliver *loved* the entire experience!! The crowd - food - clapping - music - game - it was all good.
Wavey hasn't been giggling as much the past few weeks. She has switched to weeping. She is crying throughout the day, on and off. There doesn't seem to be a reason for it, almost like her little brain is misfiring in a way - confusing her emotions. It is heartbreaking to hear her cry, see the tears fall from her eyes, and that huge frown spread across her face. She is not a crier, so this is all very unusual. We are hoping this phase does not last long. How I wish the giggles would return.
Wednesday, May 5, 2010
Wavey has had a terrible week of sleeping. She has been waking up most mornings around 4am to begin her day. Waverly & I had one of the roughest nights last night. Matt was working an overnight shift. She woke up at 2am and came into our room. She would not go back to sleep. She was so giggly and unable stay still. I tried multiple tactics and *nothing* worked. She never went back to sleep. She didn't act sleep in the slightest until around 5pm. She started to get weepy - her way of letting us know she is exhausted. We held her off to her normal bedtime and she is now fast asleep. I only hope she sleeps all through the night. Her little body has to be exhausted.
I took the photo after bath time, before we put the kids to bed. You can see the sleepiness in Wavey's eyes.
I finished the goodie bags this morning. Waverly & Oliver will give one to each classmate next Friday. Now I just have a work on the blurb that will be sent to teachers & staff and work on some signage for the ribbons & lollipops.
Monday, May 3, 2010
International MPS Awareness Day is quickly approaching. It is officially on May 15th, but we are recognizing it on Friday May 14th. The color for MPS Awareness is PURPLE. I have made hundreds of purple ribbons. I bought 400 grape lollipops and put stickers on each one with the MPS Society's website. The purple M&Ms are waiting in their package. And 4 dozen cupcakes with purple frosting and sprinkles have been ordered for Waverly & Oliver's classmates. They are small things, but I hope it can raise awareness within our community.
If you would like a purple ribbon, please email me or leave a comment. I would be happy to send some your way.
Oliver's class has been learning about bike safety and they are working on pedaling skills. He is still unable to move it on his own power, but he is getting better. However, he does keep his feet on the pedals (Wavey never understood that concept.)
I cannot tell you how incredible it feels to continue to see Oliver learn and gain new skills. I am so proud of him!
Saturday, May 1, 2010
The kids and I went into DC tonight to meet Matt after work. I packed a picnic dinner and it was the perfect evening to run around outside. Oliver especially love the WWII Memorial, because it has fountains. I took a few photos of him admiring the water.
Wavey has had a serious case of the giggles the past few days. She is laughing hysterically most of the day and night (she wakes up in the middle of the night with the giggles). The laughing is definitely better than crying.
Waverly and I attended one of her classmate's birthday parties this afternoon. It was a lovely little get together, perfectly planned for our children. We read stories, played in the backyard, had snacks, opened presents and the cupcakes. Wavey did a beautiful job. 5 of her friends from school were there and I could tell she was comfortable with them, because she was calm. I haven't spent a lot of time with the other moms, so it was nice to chat. One of them asked about Wavey's syndrome, when I mentioned that I had a 3 year-old son with the same condition. I gave her a brief synopsis - developed normally, lost skills, progressive nature of the disease and it's terminal. She had tears in her eyes. I have become so accustomed to the description of the disease, that I no longer flinch when telling people about it. I used to try to hide the grim reality, but I realized that it is much better to be honest and straightforward. I feel better understood and I think people look at the kids a little differently (in a good way). We had a wonderful time.