Last night when I went to check in on Oliver before I went to bed, I noticed that he was taking very shallow breaths. This morning he sounded much worse - very wheezy and raspy. I called the pediatrician and thankfully she is always willing to fit the kids into her busy schedule. I had fears of aspiration or pneumonia, but it turns out to be allergy induced asthma. We are now the proud owners of an inhaler and spacer. He is also on a new allergy medication. He sounds better already. Phew!
Tuesday, November 30, 2010
Sunday, November 28, 2010
We headed up to PA to spend Thanksgiving with my family. We feasted on potato filling, turkey and sweet potatoes. (Oliver ate a raspberry jam sandwich - picky eater.) We woke up Friday morning to both Matt and Oliver sick with a stomach bug. Matt recovered fairly quickly, but Oliver was sick the entire visit. He spent most of the long weekend in his pjs watching movies and snuggling on the couch. Matt and I were able to take Waverly out on Saturday for some shopping at a Christmas Market. Knock on wood, Wavey and I haven't been struck with the bug.
Tuesday, November 23, 2010
We are the proud new owners of a huge box of *Simply Thick*. I went to the pharmacy tonight to pick up our first supply. We will add 2 packets to each of Wavey's sippy cups, thickening her drink to a nectar like consistancy for easier swallowing. It is supposedly tasteless. We shall see tomorrow how she tolerates it.
In other news, I attended Oliver's "Friendship Feast" this morning. It was quite a busy day for him. He had both Occupational Therapy and Physical Therapy. His therapists worked him hard, lots of tears were shed. Then we went to school, which is not his typical routine. He ususally doesn't attend Tuesdays. But we wanted to participate in the special day. He cried for the first 30 minutes he was with his class. I was with him, but he was so concerned that I was going to leave he was inconsolable for awhile. Once the table was set and he realized it was lunch time, he was absolutley fine. It was so nice to watch him with his classmates and teachers. He waved hi a few times and he was very excited for circle time at the end of the day. He enjoys singing the "Goodbye Song" and moving his photo from the school building to the car photo. He is such a good boy.
Sunday, November 21, 2010
About a year ago a local reporter wrote a story about Waverly & Oliver in our weekly paper. A few days after the article was published we received an email from a local woman whose son passed away from Sanfilippo 25 years ago. The moment she saw Wavey & Oli's picture, she recognized the full zips, protruding tongue and button nose. Immediately, she knew they had Sanfilippo.
We began exchanging messages and about a month ago, Oliver & I met her for lunch. We had such a lovely time sharing stories about parenting a child with MPS. As Oliver dashed around the patio area, she knew exactly how to wrangle him back onto the sidewalk. Experience.
Last night, she and her husband invited us over to their home for dinner. We had so much fun. There is an understanding among Sanfilippo families that is so special. There was no behavior explanation required. Wavey stayed near, while Oliver enjoyed exploring and finding his favorite walking path. We saw pictures of their son and heard stories about his childhood. They noticed similarities between Oli and their boy - both physically and behaviorally. I think Oliver brought back a lot of memories for them. Matt & I appreciated the opportunity to talk with another couple who has been through this. It was a wonderful evening.
Thursday, November 18, 2010
Waverly did a wonderful job at her swallow study this morning. She never refuses food...even when it is laced with barium. The results were as expected. Her swallow has moved farther back into her throat, causing the gagging and choking. She is having the most difficulty with thin liquids. Trace amounts are entering her trachea, which is not good. We will have to begin using *Simply Thick*, so we can make her drinks more like a nectar consistency. I have already emailed our doctors for the prescription, so hopefully we will make this change soon.
I cannot believe she can no longer safely drink milk, water or juice without having to add a thickener. Sad.
Wednesday, November 17, 2010
After a few days of illness, everyone is healthy again. Poor Waverly spent her actual birthday home sick from school with a runny nose and fever. Thankfully it was a fast moving bug and within a few days she was back to her happy self.
Tomorrow morning I am taking her to Children's for a "Modified Barium Swallow". I think this is her third one. It is quite an easy procedure. She eating a few varying textures of foods that are tainted with barium. As she chews and swallows, they take "photos" to check for any problems. Her two previous studies were basically normal. We are confident tomorrow's will show some significant changes. This information will help us make the necessary decisions regarding dietary changes and the eventual feeding tube.
We met with an amazing speech and language pathologist who has been assisting us on this new path. We have been putting her suggestions into practice - switching to whole milk and yogurt, pureeing foods to an applesauce consistency, adding olive oil or butter to increase calories, brushing her teeth more often, taking more breaks between sips. We anticipate needing to add "Simply Thick" to her water or juice, so we don't have as many choking episodes.
All of these changes feel like they are coming too soon. I wasn't ready for this. Not yet. She just turned 7. Time is passing by too quickly.
Sunday, November 14, 2010
We had a gorgeous day for a birthday party yesterday. We had about 50 friends join us for a party at our favorite park. We had lunch, laughs and a yummy birthday cake. The highlight was singing "Happy Birthday" - Wavey's favorite song. She beamed throughout the entire song. Here are some photos from our celebration.
Friday, November 12, 2010
Oliver loves his new bed. He spent most of Wednesday evening climbing in and out of it. He slept beautifully that night - 11 hours straight. I even had to wake him up to get ready for school. He was nicely tucked under his blankets, with his ducky in hand. He continues to want to climb up during the day and chill up there. He takes toys, books, balls and scatters them around.
I am so thankful that we were able to get this bed covered with insurance and our waiver. It is going to have an incredibly impact on our family. We can rest easily at night, knowing he can't fall out of bed and get hurt. He is beginning to have the sleep disturbances common with Sanfilippo. Hopefully, this bed will make that phase a bit easier for all of us.
Wednesday, November 10, 2010
Oliver has a big boy bed!! His Sleep Safe bed arrived this afternoon. They assembled it in less than 45 minutes and we love it already. It is a little high, so Oliver is using the piggie bench to help him climb in and out - already mastered this today. He climbed right in and explored his new dinosaur blankets and pillows. All evening he wandered into his room, played on his bed for a few minutes and then ran back into the living room. He seems very excited.
Oliver using the bench to climb in and out.
The bed with the 2 side panels folded down.
Oliver getting under the covers.
All tucked in.
The bed with the side panels raised for safety.
Tuesday, November 9, 2010
Tonight is Oliver's last night in a crib. He is much too big for it, but it contains him when he is awake in the middle of the night. Tomorrow afternoon the medical equipment folks are delivering a Sleep Safe bed. This bed is like a hospital bed, but so much more. We are getting the *high* version. It is a standard twin size, with really high sides so he can't climb/crawl out of bed. Almost like a twin size crib. He will be able to wake up and move around the bed, play with his stuffed animals and babble. However, he won't be able to get out and wander. It will keep him safe and allow Matt & I to have peace of mind. The main side is clear, so he will still be able to see. That side folds down for easy in and out. The bed itself can raise and lower as well.
I bought him new dinosaur sheets, blankets and pillows. I will take photos tomorrow.
Hopefully Wavey's bed will arrive soon, too.
Saturday, November 6, 2010
Thursday, November 4, 2010
I just found out that a 7 year old boy with Sanfilippo passed away today. 7 years old. Waverly turns 7 later this month.
Each time I receive word that another beautiful child has died, it hurts a little deeper. Too close to home.
Please say a prayer, send your thoughts, or reflect on Ashton and his family.
Wednesday, November 3, 2010
I had a dream that Waverly could speak again. She was sitting on my lap and I asked Matt to puree her dinner. She took my face in her hand and said, "puree". I was stunned and then she did it again. I called for Matt and told him this was crazy. She looked into my eyes and said, "this is craaaaazy".
It was short and simple, but what a gift. One of the things I miss most is her beautiful voice. She had such an adorable lilt to her voice. She loved to finish the lines to her favorite books and she was always up for a song.
I wish I could fall back to sleep and dream that dream again.