Friday, July 31, 2009

Yes my baby had a stroke!

Last night Mike had to run to the store to get our terrorist Spot another collar. He had gotten out again yesterday, and came home without his name tag, or collar. I decided I would go with Mike and pick up Emily's school supplies. While we were walking into the store two elderly women stopped us to look at Jude. I enjoy showing him off so this didn't bother me at all. They oo'd and aww'd over his adorable curls, and he flashed a little smile. I think it was apparent to the lady on the left that Jude had some issues, so she just politely smiled at us. The lady on the right just didn't get it, and asked "Has he taken his first steps yet?". I saw Mike grow uncomfortable but he simply answered, "No not yet". Well she didn't stop she kept telling us how her kids walked late, not to worry, etc etc. I finally stepped up, and nicely replied, "Jude had a stroke before he was born so we are unsure if he will walk, but we are keeping our hopes up". She still kept telling us how her kids walked at 18 months, and not to worry. I thanked her for being kind, and proceeded to walk on.

I don't reply this way to make anyone feel uncomfortable, I simply share the truth. I am not ashamed that my son had a stroke, and I have no problem letting people know this can happen. I also don't do this to abruptly end a conversation, although sometimes I think I need to. We live sheltered lives sometimes believing that unfortunate circumstances cannot happen to us. I have been told by doctors that we "drew the short end of the stick" during our pregnancy. Harsh, and true to a point, but Jude is definatley not the short end of the stick. My point is people should be prepared that unfortunate events can take place, and that you need to learn to adapt. Of course, I wish that Jude never encountered his stroke, and that he was taking his first steps. Of course I wish he could roll, hold his head up, and hold objects. Although, he isn't, and I love him just the way he is. I love that I can sit and hold him for hours, and that he will just stare at me, and grin. I love his little pterodactyl squeal that he let's out when he is very happy. I know Jude will most likely live with Mike, and I as long as we can care for him, and that doesn't bother me a bit anymore. Jude is special not because his special needs, but because he is JUDE!

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So we saw the pediatric hematologist yesterday, and I really liked her. I was happy that her office was right across the street from my work, because the appointment took over an hour. She was very detailed, and took her time with us. In my opinion you can tell a doctor is quality when they do not rush you out the door, and spend time getting to know your case. She reviewed my plethora of information in Jude's medical binder I keep. She looked over all of my blood work, and all of his. She asked Mike and I a long list of questions. She then said she was unsure if she should test Jude for a bleeding stroke, or an ischemic stroke. Old feelings of panic swept through me thinking she was going to tell me Jude didn't have a stroke, and his issues were my fault for some reason. I knew that wasn't true, but as a mom you cannot help questioning why it's your child that had something happen. She reviewed the in utero MRI findings, and saw the bilateral blood. She said this leads her to believe he had an ischemic stroke. That basically means Jude had clots that broke loose, and she believed they went to his ventricles causing them enlarge. She explained that initially she would lean towards the bleeding stroke since I am a bleeder, but the MRI makes her believe otherwise. So she is going to test him for both potential issues both bleeding, and clotting. We were told his risk of having another stroke was only 2% unless they find something underlying. Then she sat on the table, and in a nice tone she explained, " a lot of time parents come in here, as they should, looking for information on why their child had a stroke. Many times our tests come back 100% clean which is wonderful news, but it means you still don't have an answer as to why this happened". I thanked her for her kind words, and explained that I knew this would probably be the case. So Jude gave several viles of blood yesterday, and he goes back in 3 weeks to give more. In 3 weeks he also had to give blood to check his Depakene levels (his meds) so her office is going to do this instead of the diagnostic center we normally go to. It's all a bit confusing sometimes, but it was nice to have a specialist look at his charts, tests, and give us her opinion.

4 comments:

Katy said...

Yeah. Hubby and I are fine with Charlie and his issues, but we feel like big downers when we tell other people. We call it the CP bomb.

Candace said...

Jenn,
AMEN, sister! How lucky we are to be in the lives of these children. I love Katy's comment about the CP bomb! Faith is now at the age where people usually don't ask,it's apparent, they either are afraid to or are polite enough to keep their mouth's shut. After Faith was born and they dxed the clot, they also said she had protein c and s def.-a clotting disorder. But all subsequent tests have come back normal!??! I guess we won't ever know. I do have a hard time with that.

The Redhead Riter said...

for you...

http://theredheadriter.blogspot.com/2009/08/secrets-friends-and-sharing.html

Amber said...

I love your honesty on here. Sharing your thoughts and fears...I think that I fear writing it...perhaps it makes it more real.? *if that makes any sense*
Anyway...I think that you are an amazing mom...with a beautiful family and a stunning son! :0)