Thursday, March 11, 2010

medication update, CBS 11, and a cute little picture

Jude's Dr called me today to talk to me about the medication, and how he really feels it's best for Jude. I guess he had heard I was struggling with giving Jude this drug. He said that the deaths from Felbatol have been age 14 and older, and most have only been in women with other underlying issues liek Lupus. I explained to him that as a couple Mike and I would have a very difficult time if Jude had a severe reaction to a medication we gave him. He understood where I was coming from, but he then said the lack of medication could also cause huge problems. He believes that Jude will never progress if he continues to have the amount of seizures he is currently experiencing. If Jude doesn't progress then the outcome will probably not be favorable.

So Mike, and I are still at a loss, but we are being pushed towards the medication route. I still struggle wondering if there is anything surgically that can be done in the future that will help Jude. Jude is a very sweet baby, and he giggles, and smiles but I still hope one day I can see him progress further. I snapped this picture of Emily holding Jude, and it looks like Jude is standing, what a sweet sight! Let me point out that Jude kept his head up for about five seconds prior to it falling right after I snapped the picture. It's a strange relationship with emotions in the world of special needs. You are so thankful for such small things, but at the same time so angry at the large milestones you miss.
Image and video hosting by TinyPic
Regardless, I am so happy my little boy can smile and laugh, it warms my heart!

Emily's interview came out with CBS 11, http://cbs11tv.com/video/?id=52629@ktvt.dayport.com. I just love how articulate my child is, and how unafraid she is of the camera. I am however, disappointed they didn't mention her website, or how she can accept donations. She cannot keep sending out Smile Boxes, without donations. If you watch the video you can see that she involved other kids this time, and even had them sign a postcard letting the patient know that particular person made their box. Emily also received two letters from little girls yesterday that had received her boxes. One little girl was still in the hospital, and Emily emailed her back asking if they could be pen pals while she is in there, I thought that was sweet. She also received a letter from the little girl who had a stroke, she is in the hospital in Arkansas. She hates that the kids are sick, but she likes hearing from those that receive her boxes. I think the letters inspire her to continue her cause. Now, we just have to figure out how to achieve her goal of getting Smile Boxes nationwide!

9 comments:

Purple Quilter Queen said...

That was a great news piece! It really brought tears to my eyes with that last line that you said about Emily just wants to make kids smile. So sweet. That is a great picture of them on this post too! He's so tall!

Candace said...

SEIZURES SUCK.......


BTW Way to go Emily. We are so proud of you and all you have done! You are a bright light in a world that often has a lot of darkness! Clapping, Clapping,Clapping....

Anonymous said...

There are no words to express my amazement with this little girl. I think a large part of her greatnesss is a result of her Mother, Father, stepdad and Jude. All molding this child into the person she is!!! I praise you all and what you do!! AMAZING

gilda said...

I am sure you are very proud of Emily for everything she does. It also brought tears to my eyes to see her dedication to the smile boxes. Congratulations Emily on your enterview you are truly a sweet angel to help make smiles when they are desperately needed:0)Love the picture of Jude so handsome! I will continue to pray for you and Mike on your medication issues with Jude.

Colleen said...

That's a sweet picture!!

Katy said...

Gosh. Well he does raise some interesting points. You know, when they first prescribed Prednisone for Charlie I was so worried because it very specifically said that people with heart issues shouldn't take it and Charlie had had heart failure. The cardiologist explained to me that we would keep an eye on it and we could stop at any point. Best decision we ever made--prednisone was a life-saver.

I think the surgery idea is a valid one, but I think there are only a couple of places in the US that do it on children. You might have to call someone like the Cleveland Clinic if you're interested in that.

Holly said...

The ER gave Caleigh Felbatol when she was having her hour long seizure a few weeks ago. It was the third drug that they used out of 4.

I know every kid is different but Caleigh was fine with it. It was one of those moments where you try everything to save your kid.

If I was in your shoes {which I'm not} I would go with what I 'know' is the most harmful for Jude. Up until this point you know what the seizures have done and can do. Seizures can do horrible things not controlled. If Jude starts acting weird or something changes with him on the medicine then you can always stop the med. Go with that great momma instinct.

Have you talked to your doc about the Keto diet? I know it works great for Kendall.

mom2nji said...

First let me say, as someone who has read your blog for a while now, I was crying tears of pride for Em. She did such a good job. (so did you).
Gosh Jude is getting so BIG!
Now for the drug issue...
I wish I had the magic answer with Noah and his autism and ADD issues, I have struggled with when or whether to give drugs. And with Jordan's asthma it is a constant battle, many asthma drugs have scary side effects. All I can say is research and then go with your gut.

bluecottonmemory said...

What a beautiful daughter, inside and out! She reminds me of my oldest son, called to greater responsibility because of being the oldest. People always said he was born an old man.

There are two things I've learned about making decisions. 1)When you have peace, you know you're doing the right thing - because that peace comes from God; and 2) Sometimes the angrier and more torn up you get about a particular are like opposite day logic - the harder I fight, the more angry I get means that is the choice. Once I finally submit, then I have peace.

I know that when my children have had struggles, I try to move heaven and earth to find solutions. I'm like a dog with a bone. There's really no contented rest until "I" have solved the problem.

I pray that God gives you peaceful sleep and restful dreams in your family journey. You are an amazing, strong, so loving mom - a fighting mom, too (cause that's what good moms do). I'll keep your family in my prayers:)