Wednesday, May 27, 2009

Spasms, tournaments, storms...oh my!

Good morning all. I hope your night of sleep was better than mine was! Yesterday Emily started her tournament, so I raced after work to get to the ball field. When I drove up I noticed that the sky to the west was very dark, and anticipated storms heading our direction. Halfway through our game the sky became more ominous, and lightning began to spider through the sky. That's when they called all the girls from ALL the teams under the concession stand awning. Now granted this is a nice field, but it was a little like being at Disney world.....with all girls......at least a hundred of them anyway. I quickly was inflicted with noise pollution, and tried to tunnel my way out of the ballpark! As I was looking for a shovel to complete my desperate attempt to escaping, the officials called all the games because of impending large hail. Emily and I had a blast racing to the car to outrun the storm. I am sure I looked hilarious running in my high heels, and business pants. We got home, and safely inside our house, and watched the news for information. I saw storms coming later in the night so I went to bed early. Good thing I did, because at 1am all heck broke lose from the sky at my house. I am pretty sure "The Perfect Storm" unleashed until a little after three. At that point Jude was stirring so we were able to feed him 6 ounces of milk which was wonderful since he hasn't been eating. We finally drifted back to sleep only to wake up to Emily's alarm. So all in all we got about 3 1/2 hours of sleep, and Emily missed her bus......HELLO WEDNESDAY! Can I go back to sleep and try Thursday?

Yesterday Jude only took a total of 15 ounces, without any baby food. We do put rice in his bottles so he is getting some extra calories there. We are going on about 2 1/2 weeks of Jude not eating normally. He is teething, but with Jude there are so many other issues to think about. He is having more spams than usual which could be attributed to the paint of the teeth, the weather, or he needs more medication. Again, take your pick. It's a roulette wheel of possibilities sometimes. Last night when Emily and I got home from our mad hatter adventure in baseball we played with Jude. He has this new thing where he "talks". He looks like he is upset, but you will see smiles break through, and you know he is just trying to communicate with you. I was able to record one of the sessions last night. You will notice an adorable smile, but you will also see a small spasm. These are very different from his once violent seizures, and a more accurate way to show his infantile spasms. It's just a subtle movement, and you will hear me say "small spasm". Also, Jude turns his head side to side a lot. For you other CP mothers is this normal?

So the good news is, Jude is communicating more with us. He can also sit for a second without tumbling over. The bad news is he isn't eating well, and his spasms have increased. Is there a happy medium in this situation, or is this the happy medium because if it is ..... argh! Without a further wait here is the video. Again forgive my high pitched mommy voice...I can't help it people!




4 comments:

Kristina said...

HI. I linked to your site from a comment on one. Your son is adorable! So cute to see him *talking* with you. Regarding turning head side to side, our OT told us that with children that don't meet their physical milestones, they are often trying to stimulate their vestibular systems and that can cause them to turn their heads side to side a lot. She taught us to swing Emma all bundled up in a blanket side to side. Two people have to do it and each person takes the corners on one side of the blanket and picks it up with Emma in the middle. We then swing her back and forth while swinging. When we are done our song, we put her down and ask her to vocalize to get us to do it again. She LOVES this exercise. You might want to try that or ask your OT for other ideas to see if that helps him.

Kristina

Cjengo said...

That is so good to know, thank you!

Kristen Andrews said...

your son is adorable! Please feel free to contact me re ideas for a pediatric stroke awareness necklace.

klacustomcreations@comcast.net

MommaD said...

I will definitely be reading on a regular basis! I am following from Mom Bloggers Club now, but more than that I am touched by your story. I have a son born the last week of August, and cannot imagine the long journey these months have been for you. You have many challenges, but I look forward to following your journey of a beauty filled life with your family! Blessings!