Monday, December 29, 2008

Another update

Jude had a horrible seizure tonight. It was so bad that Mike and I both just sat on the couch and cried. I looked at Mike and asked through the tears "Do you ever think that we made the wrong decision?". He said "everyday". It's not that we could EVER imagine Jude not in our lives it's the fact that Jude is in PAIN! He has a tiny little whimpers that he now lets out through these seizures, and he looks directly into your eyes like he is pleading for you to make them stop. It honestly makes me want to vomit! I feel so sorry for him, and I don't understand why this is happening. I will probably NEVER understand why life allows poor little innocent babies to suffer. Although I have said before that if the doctor's said this could be "dyslexia" or "major mental retardation" I am sure we would still choose the same option ..... to give him a chance. We love Jude so much and want him with us always, but I see his life shortening with each seizure.

The nurse called back from the doctor today, and said that the doctor was out of the office. She approached our concerns, and verified they were valid. She assured me though that they do have Jude's best interest at heart. She said that the extended time until the first office visit gives them more time to evaluate his situation. She said we should continue to call each time his seizures strengthen, lengthen, or change in anyway. This helps their office identify the true issues, and what medicine will help him most. I told her we feel a little "lost", and she asked me "why". I explained that we feel we have a baby that is so sick, and needs so much help that we don't know if what we are doing is correct. People can say "don't be negative", but reality says he is ill. We have to acknowledge that and help him the best we can. She acknowledged we were very correct in thinking this, and that we are doing a great job. She said their office is here to help us, and will continue to do so in the best possible manner. So the doctor will call tomorrow to see if they need to increase or change the medication.

So this is not easy on Mike and I either, and although that is one part I won't go into detail on I will just say it's not easy. I pray that we make it through this and become closer through our journey. I have faith in our love, and I believe we will make it through. There are times I just want to run off on a vacation together like we used to, but then I remember we cannot. We don't really need one though because we have Emily's smiley face, and Jude's sweet demeanor. While mentioning the vacation I thought about reading my magazine tonight (while in the tub of course), and I thought about all these celebrities that sprinkled the pages. I thought of their sometimes easy lives, their live in cooks, and more. I get so annoyed with the modern day ....."I didn't do anything" rich kids. Maybe I will write a blog on what I would do if I was a! It might be interesting. (No being a millionaire won't help Jude this is just me being funny because people in these magazines CRACK me up!! smile).

On another note and then I will close. The one thing that did make me smile tonight was this video:
I could just hear Mike's "cat" voice when I watched this. In fact when I showed him this video tonight and he immediatley broke into his cat "You no see me" while laughing hysterically. I have to record Mike someday so you can share in this experience! It's the little things......


Anonymous said...

Would being a millionaire help Jude?

You might get more medical care or even better medical care but money will not buy a miracle. Your miracle is laying there in your arms, is surrounding you in your home and is amongst you in your friends. Forget those stupid celebrities...many of them don't have a fraction of what you have. Even I, an average person, don't have a fraction of the love that you have.

It sucks that Jude has these seizures and it sucks that you guys have to go through this and it sucks that people like me can't do more for just sucks. And it makes me mad. But at the end of the day you got to spend another 24 hrs loving that little boy and he got to have his mama and daddy help him through another day....and for that I am thankful.

I pray that GOD gives you the strenghth to go another day.

Cjengo said...
This comment has been removed by the author.
Cjengo said...

Aw thanks. I think you misunderstood though ... because I didn't explain myself well, which I have a habit of doing. Money will not help Jude, and I am proud to hold him in my arms. I was simply making reference to some of the ridiculous items we see in magazines. There is no one in the world that has what I have, and I am grateful for every bit of my blessings.I thought about doing a funny blog on what I would do and NOT do with a million dollars like ... um NOT buy a pink luxury car! lol :). That gave me a laugh. Again thank you for your sweet post.

Jennifer said...

I have to tell you - that cat video had me laughing out loud.

Of course, you know we always had cats in my house when I was younger. :)