Thursday, June 10, 2010


Jude was up a little after two am again, and was up and down the rest of the night. When my alarm went off at 7:30am I contemplated smashing it into bits, but I decided I would need it again. Reluctantly I finally got out of bed, and as I did I heard Jude's whines ... again. I went over, and grabbed him, and laid him into our bed. He quickly snuggled up to his dad, and went back to sleep again. No one can tell me this little boy doesn't know what he wants, or doesn't want. He is emotional, and has needs, and he wants those needs met. I will never forget the famous terminology used by our first neurologist that Jude would doubtfully progress, and "it doesn't take much to be baby". Maybe not, but this baby knows what he wants, and that's an accomplishment.

Once I got home last night from work I was literally exhausted. I was cranky, I was annoyed, and I wanted some me time. I rarely get in moods like that, but I promise I was in one yesterday. I think it was a combination of exhaustion, huge work stress, and just overload. So you know when you walk in the door, and you get about 1 million questions from your family? Well I reminded myself how lucky I am to have my family, and entertained them until about 9pm, then I was done. I was then blunt about the fact I needed some me time, and I was "overcapacity" or "twitterpated", and twitter would say. My husband cracked up that I used those terms, but I was serious. They kept pushing, so I pushed back, and my husband said he didn't like me pushing back. I explained I was voicing I needed time, and that no one was listening. He said I am the mom, and he was raised that the mom should always be perfect. I replied "Yeah well I am not". I think he was getting a huge kick out of the fact that I was not being my normal Ms Congeniality, so he was going to push me as far as he could. He would argue with a half grin on his face. Finally, he went upstairs, Em went to bed.........and everyone left me with a cranky baby. "Well just fabulous", I thought to myself. I proceeded to have some me time while holding the baby, and typing on my lap top with one hand.

I have not heard back from the neurologist yet regarding Jude's new seizure activity. I am waiting on him to call, but we do have an appointment on Tuesday. So even if I don't hear back right away we will have our answers next week. I am going to make out a list of questions I would like Mike to ask the doctor when they go.

I am going to try to set up a night away for Mike and I think weekend. Just dinner, and a movie would be great. It's difficult since Mike's mom is not available, but I think I found a sitter which is wonderful. Let me also say that Emily has been a huge help since she has been home from school. She is a little blessing for sure.

Speaking of Emily, my friend is determined to get Emily on the Ellen show. Emily just loves Ellens show, and she understands that by being on her show she could really help Emily's cause. Emily's goal is to someday have her boxes in every children's hospital in the nation. This would take a corporate sponser, legalities, and items we would just have to have help with. Please help Em reach her goal. Just go visit this site and join the cause to get her to the show!/group.php?gid=133176776694475&ref=mf then repost it on your page, and invite your friends. Also, please twitter about it if you have a twitter account. Emily has a good heart, and only want to help as many kids as she can.


Candace said...

Yikes, poor Jenn! I know it isn't funny but you made me laugh! Sometimes Carl tries to goad me like that! LOL!

I wish I could offer you some help with little Jude's legs. She has not had any problems with dislocation, though. Is Jude really tight in his legs? I do know that wearing knee immobilizers at night really helped with Faith's tight ham strings. And of course her braces at night. We just recently stopped both after six months but we have to watch closely for any changes and she will go back into them. I wish I had more stuff to help you, my friend. Does Jude see an orthopedic doctor? It sounds like you might want to pursue that route.

Anonymous said...

Jenn..WOW, you are an inspiration! You have a beaufiful family! I love your Emily Smile boxes..what a wonderful idea. I am sure they are such a gift to children all around. What a blessing you are to so many families and their children.

THANK YOU SO much for sending on to little Sam. He has had a difficult week and needs all the support and encouragement he can get. Thank you so much for doing this for him!!!

Blessing and hugs to you and your little Jude!!

Jamie said...

We have found with Anna that when we giver her melatonin she sleeps really hard for about 5 hours and then after that she sleeps like crap the rest of the night. She also seems to maybe have nightmares but I can't be sure about that. We tried from 3 mg to 9 mg and it seemed to get worse as we increased the dose. Our neuro tried many different meds but finally put Anna on trazodone and it has worked wonders. She still isn't a perfect sleeper but she is a million times better than before. I hope you get a good night's sleep soon, you deserve it!