Thursday, January 15, 2009

Follow up

As stated last night on my blog, yesterday was very difficult. Mike and I had a counseling session at noon so therefore he and Jude came to my office to pick me up. Upon entering the door I heard Jude's little yelp, and I knew he was having a seizure. I carefully removed him from his car seat, and sat holding him while he finished.... all the time wondering if my boss overheard him. Sarah was in her office, and was rather quiet until Jude was done. Once he stopped she came in, and asked if that was the yell I was referring to. I explained that it was, and then she said "I just couldn't handle that everyday". She could though when she had no choice, and she is strong so she would be okay. That's one thing I try to convey to people, is that I don't want to handle this either. It is just not a choice that was given to us on whether we want to handle this situation or not.....we just have to. So from there we went to the counselor just to talk about our feelings regarding having a sick child, and how it is affecting us as a pair. I was actually rather proud of Mike and I because by the end of the session the doctor seemed to have a good opinion of us. Let me clarify this is a doctor with a background in ministry so I was unsure how he would respond to the entire situation. We are Christians, but we also have to be realistic with Jude. He said that he thinks "We have a good balance between having hope that Jude will defy the statistics, and also understanding that his time on Earth could be short". He said it's good to have faith, but it's also good to understand what could possible happen. He said he thinks we understand that each day Jude is here is a blessing for us, and that we will learn a lot about ourselves while walking through this journey. He also pointed out that by learning about ourselves Mike and I will grow closer rather than grow apart. He then talked to me about how men just have to retreat to their cave every once in awhile. He also talked to Mike about making sure he eats while in his cave, and poking his head out to say hi to me ...ha. Also, at the beginning of our session he asked what the doctor had told us in the hospital. It was interesting to hear his response. I explained that the doctor said, "that he does not have a crystal ball, but this is what the statistics are, and that he has never had a child with as much damage as Jude be normal or live past early childhood". He replied "You cannot ask a doctor to be more truthful or direct than that". I think by the time we left we did feel better, and the doctor stated he really thinks our sessions should be on an as needed basis. Mike and Jude then went to Gymboree as I trotted back to work. Mike called later saying that Jude did have fun at Gymboree and even had expressions on his face. Mike also stated that Jude was in awe of some little baby that was screaming and laughing next to him. Which is great that Jude was so fascinated with him, but it made Mike sad that Jude doesn't laugh. So later in the day Mike called very annoyed because Jude was fussy again, and he didn't know why. He again wouldn't take his paci, Mike had to hold it in his mouth, and Jude was just not happy. I explained that Jude might have a headache due to the seizures he had been through that day. Mike was so frustrated he just couldn't really discuss it. So I called the doctor and got a dosage for Tylenol, and then called Mike back. By the time I had called back though Jude was asleep, and Mike was getting a break. I could hear the frustration still seeping out of Mike though, and I know this is so hard on him.
So after I talked with Mike the neurologists office called my work, and I updated them on the seizures. I then asked them if Jude had any clotting tests done when they took ALLLLLLL the viles of blood from him at Cooks. She told me they hadn't, and then gave me the name to a pediatric hematologist. It is my understanding that clotting disorders, and other blood issues could be the factor for the stroke or the brain bleed. So I asked her if she thought it would be a good idea to have this testing done. She replied "Yes I think it would". I then said "Well if he does have this disorder then he could potentially have another stroke or brain bleed in the the future correct?" She said "I would think so". I get SO aggravated with doctors offices!!! I mean why wouldn't THEY think of this instead of ME think of this??? So it also turns out if I have something called Factor V Leiden which is a clotting disorder it can be passed on to Jude and thus caused the stroke. There are many things that could have caused this that I had no idea about, and then there is a pretty good chance there is still just no known cause. So the neurologist gave me the number to a pediatric hematologist, and I then called my hematologist to ask them if while tracking the ITP if they performed blood clotting tests..............they didn't. Sometimes I get SOOOO frustrated with doctors offices!!! The doctor then asked what was going on, and I informed him of what happened with Jude. He put me on hold and came back and said "Come in TODAY... like immediately!" So I have an appt at 12:30 to get my blood tested again. So I then called my aunt to inform her of today's findings and it turns out BOTH of my cousins are factor V positive. One had severe issues in her pregnancy, but the baby is fine. The other cousin cannot take regular birth control due to possible conditions that arise from the factor v. So this is all very interesting. I called Mike, and told him of my recent findings. His exact reply was "I used to think you were crazy for doing all this research, and educating yourself about this situation. I thought you were crazy because it won't help Jude or change his situation. Although I get it now ....if there is an issue that could affect Jude in the future we need to know." So I feel a bit like Nancy Drew and evermore convinced that I need to find my way into the medical field ;). This does all bother me because of course I feel like if something comes back positive then I was responsible, but that is something I will work through.
So once I got home last night Jude was still asleep so i took a long hot bath. Once I got out I could hear Jude crying, and I went to go get him. Jude never cries unless he is having a seizure so something is bothering him lately. I had a "mommy" feeling and I stuck my clean finger in his mouth on to his gums and OUCH the little stinker bit down hard! So he may be teething a bit, and therefore I went ahead and gave him that Tylenol. Not long after Jude was quiet, and sitting in my arms staring at my face like he does. Although, not long after that we got hit with another seizure, and this one made Mike and I both cry. Yesterday was just exhausting for some reason, and last night when my phone rang I didn't even bother picking it up. We were mentally and physically out of it. When I got up this morning I mentioned something we talked about last night and Mike replied "was that last night? What did we say?". That seems to be a general response from both of us lately. We are forgetful and sometimes don't fully comprehend emails, and conversations. I am a part of the pediatric stroke network, and sometimes I feel so bad with the emails I send because they can be repetitive. I told one of the girls on there she could kick me if she wanted to..ha! Hopefully people are patient with us, and understand we just aren't all together there sometimes. Between work, and home I lose my mind at some point during the day.
On another note Em came home yesterday and raved about school and choir. She then said "Oh, and mom Eli likes me! I told you I could get him to like me". I said "Wait Eli? No you said Kassen......I am so girls play musical boyfriends". She just giggled and walked away......sigh! I am in trouble folks.

Here are some recent pics for you.

Jude is losing his hair so he resembles Jack Nicholson:
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Jude loves his carrots his sissy feeds him
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No really he loves carrots
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I walked in and found this the other night. I guess Em covered Scooter up and they went to sleep together
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Erika Pollock said...

I love that pic of Mike holding Jude with his crazy hair!! He is precious as well as your whole family. I read your blig everyday and say a pray for you all.

Lots of love sending your way

Boutique Mommies said...

I have factor 5 and have had 3 pregnancies the last 2 were maintained with blood thinners but none of my children have had any problems. I asked my pedi about it and hemo and they really didnt think it was a concern as of right now with the kids. There is a chance they will have it but really not sure. I inherited it from one of my parents which is the less serious form, if you inherit it from both then usual you have to take blood thinners for the rest of your life. Me on the other hand I just take one aspirin a day (baby aspirin). I can sympathize with you when you ask why they havent done these test. With my past 2 pregnancies (when in the hospital) and even with regular doctors they look at me strange and say what is Factor 5. If you need more info or want ask any questions feel free to email me.Hang in there and I am praying for you and your family!