Saturday, August 1, 2009

Smile boxes, bread mishaps, and the eye doctor

It's Saturday and I am sitting on the bed typing my blog as I watch Jude sleep. It took awhile for him to go to sleep today, because he kept having spasms that were waking him up. I held his paci in his mouth as he occasionally twitched, and he finally drifted off to a deep sleep. Other than that circumstance it's been a nice day of relaxful times. We get Emily back tonight, and I am so excited about that. I know she is ready to us, and we are ready to spend some time with her.

Relaxing for me can include cooking. I enjoy baking nice treats for my family, and it's my way of unwinding. This morning I made homemade banana nut bread, and Zucchini bread from scratch. When I pulled the Zucchini bread out of the oven I received a rather spicy smell, and it threw me for a loop. Suddenly I felt like Homer Simpson and the word "D'OH" escaped my mouth. My cinnamon, and cumin are in the same type bottle, and it was obvious I had used the WRONG BOTTLE. I sighed, and threw the bread into the trash. Luckily the banana nut bread was not harmed by my cooking nightmare.

Jude went to see the pediatric eye doctor yesterday, and she was very nice. She said she noticed Jude's left eye is becoming lazy, and rolling down. Therefore, we have to patch his right eye to try to get him to use his left eye more. Jude's stroke was worse on the left side so I am assuming this is the cause of his current situation. So he has cute "boy" patches for his eye, and we will start this soon. In fact I may put the patch on while he is sleeping so there won't be a protest. She also marked him "legally" blind on all his paperwork, but this is more of a call for therapy vs a permanent diagnosis. The hematologist had noted the day before who Jude "recognizes" us and turns towards us when we speak. She also noted how he will look directly at our faces, so I see some hope for his vision.

To our great surprise we received 4 donations for Emily's Smile Boxes today, and this made me so happy. I called Emily to tell her about it, and she was so thrilled. I explained to her that I had located a shelter in Dallas that houses abused children. Since abused children are a subject close to my heart I asked her opinion on adding them to the Christmas box list. She was all for the idea, and said "That would be great mommy". I know it seems I take on a lot, but honestly I have whittled my load down to work, home, and smile boxes. I make time for my friends when I can, and I have gotten the courage to say "I am sorry, but I cannot make it" to events. I try not to overload our schedules, and I focus on what's important. To Emily, and I the smile boxes are very important. Maybe they are an outlet for grief, but it's a good outlet. As a child I always wanted to help other children, and due to my daughters idea, we are now able to accomplish this. I so enjoy it, and I only hope it grows into a large non profit empire where we can ship these boxes to all the children's hospitals in the nation. It's a lofty goal, but one we are working towards. Emily cannot wait to hold her "smile box making party" for her Christmas boxes.

So I pulled my normal demanding self routine with a friend of mine who's daughter also had a stroke. I feel bad because I kept texting, and emailing her talking about day to day schedules. She was going through a time where she just needed a break from life for a bit, and bad Jennifer hounded her. So please forgive me, I have a tendency to do this when I worry about others, and wonder what I did. Everyone needs a break, goodness knows I take one every now and then. It's needed!


~Amy Rose said...

Jenn...your cooking nightmare made me laugh! I did that with Sopapilla Cheesecake last year...instead of using regular crescent rolls I used Garlic crescent rolls. Did not even realize it until I took it to work and we tried it and it smelled and tasted like garlic! Ha Ha! They love to joke with me about that...forever! Anyways...we will keep Jude's little eye in our prayers for it to correct and get stronger! Also, I will try and send you a donation for Emily! I played the clip for Brant to watch and he was so touched. I told him I had made a donation and he said "give more!" We think what Emily is doing is just so thoughtful and unbelievably mature and she has just touched our hearts. I can not imagine the pride and joy you have for her! I am glad to see you having a relaxing day at home! Take care...and enjoy your weekend!

Thalyn Crabb said...

Jenn, I am sitting here with tears in my eyes as I read through the experiences shared in your blog. While it is so overwhelming to read about the many challenging and often scary circumstances of your life, it is also comforting to find someone who has walked this path. I found your blog as I was searching for information on the effects of prenatal stroke on vision and eye movement, and was moved by your experiences and outlook on life. I also have a son who was diagnosed with a prenatal stroke. We got his diagnosis at eleven months, and were just so glad to finally have an answer as to why he just couldn't do the things he "should" have been doing, standing, crawling, pulling up, sitting indpendently. Then the gravity of the situation set in, and we began to fear the long-term consequences of this diagnosis. He is now three-years-old, and receives OT, PT, and Speech therapy. I love the opportunity to connect with other parents of children who have suffered prenatal strokes, as they understand the great battles and small victories we experience every day. I will be watching your blog and sharing in your joy over each milestone gained and all to often setback. I will also be praying for your family as this truly affects every aspect of family life. Keep your positive and often humorous outlook on life as this is what gets us through the challenges we face daily.

Thank you for your inspiration!
Thalyn Crabb