Saturday, March 20, 2010


Sometimes it's hard for us to watch young children that are Jude's age walk, and run around, but sometimes it's not so hard. Sometimes we are very accepting of the fact that Jude has cp, epilepsy, is legally blind, etc, and I have an example from this weekend. Emily had a pageant this weekend, that a darling friend paid for her to enter. The pageant was based on facial beauty, and personality, so Emily really wanted to go. My friend knew Emily wanted to attend, and she did everything in her power to make that happen. So when we heard she received an entry we did our best to help her succeed. We took her to the function (which was luckily in Dallas), and while at this event we noticed several kids Jude's age running around, and several others that were older staring at Jude. There was one little girl imparticular, about age 6, that thought Jude was ever so fascinating. She walked up right in front of us, and just stared at Jude for a long time. I just smiled at her continuously, and then I looked at Emily, who with all her maturity was also smiling at the young girl too. Em just cut her eyes to me, and made a nod that she understood what was happening. It's not the girls fault that she stared, she was just trying to figure out Jude' situation. Young children stare at Jude more than adults do, and I know it's because they are wondering "how does this happen". I sometimes wish the parents would just teach them to ask what happened, rather than letting them constantly wonder. I know in some circles it may be considered rude, but I would just prefer people ask. Regardless we just accept this happens now, and accepts Jude the way he is. Mike made reference that it seems more "men" just don't get it. A dad told him how great Jude's stroller was with the cool "headrest".

So last night was rough. We were exhausted from the weekend, so we just laid around, but we noticed Jude wasn't acting like himself. He was very fidgety, and he was coughing a lot. We have had an issue with Jude gagging lately, and we aren't sure if its teeth, medication, or mucus. Anyway, so I finally just laid him in his bed last night, and I heard him cough, and checked on him several times. The last time I heard him cough I figured he was alright, and didn't check on him right away. UGH, of course that's the one time he had throw up all over himself, and the bed. I called Mike down, and we bathed Jude, changed his sheets, and got him dressed again. We spent the better part of the night with Jude crying, coughing, or him having seizures. I counted 26 seizures last night. So I am at work 100% exhausted today. I really don't even have the energy to talk on the phone, but I have to. I emailed the neurologist to see if this is an effect of the new medication, but Mike feels like it's Judes teeth. I am not convinced of that. The nurse is there with Jude now, and I have asked Mike to let her know I would like the suction unit used on Jude today.

So my family is in town. I am going to run by my cousins on the way home, but I am sending Em home to rest. She was up last night too, because of Jude, and was late to school this morning, poor thing. She also said she had a nightmare that really scared her, which is strange, because I did too. We are hoping for a better night with Jude today, and I will update once I know more.

Oh and Miss Em won overall photogenic, which I am THRILLED about. Her natural photo won over all the glam photo's etc, she also got Personality Supreme (go figure). She had a wonderful time, and she is so thankful to the people that helped her attend.

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Midwest Mommy said...

That is a beautiful picture!
So sorry things were rough last night. I hope tonight is better.

Colleen said...

What a beautiful girl you have! I don't like it when kids stare either, but actually I would rather have them stare than the adults. I hope you find the answers soon to Jude's seizure activity at night.

Candace said...

Crap.....stupid seizures....Did Jude's doctor give you a time line for the new medicine. When you might see improvement if it comes? I sure pray that it does work for him. We know a family in our area whose son is similar to Jude but has Myoclonic encephalopothy. But he has struggled with seizures like Jude does. Dozens of them in a day and every kind of medicine. So frustrating. BTW Emily's picture is wonderful....

AmandaK said...

Beautiful picture of your daughter!

I have an award for you @:

Purple Quilter Queen said...

Gorgeous picture of Em!

Katy said...

Beautiful pictures!

I think that kids have a curiosity that adults have, but they haven't been taught that it's rude. I don't mind children's curiosity--I figure if they learn about disability when they're young, then maybe they'll be more educated adults.

Debbie said...

What you describe with Jude is what I have been living with Hudson...up until our ER run and hospital stay last week. I completely know the vicious cycle of coughing, mucous, vomit, seizures all too well! So sorry...I hope he is now doing better.

I know what you mean about the staring. My 2 typical kids have been so exposed to so many differences, being at a children's hospital so much, that they never stare or gawk at any one who is noticeably different, and it makes me so proud. These siblings learn a huge lesson in life quick, but I am proud of how they handle it, and embrace those like Hudson vs. those who don't get it.

Oh, and BTW...what a cutie patootie your little girl...well she is past cute...absolutely stunning pic!