So my aunt came to my house this morning at 7:30 to watch Jude, while Mike and I worked today. Mike has to finish his portion of the job that is out of the city, and then he will be free again for Jude. I believe he can have his guys finish the final stages of the job up without him there. I called my aunt about 9:30 to check on Jude, and she said I must have mothers intuition because he was seizing. I could hear his little yelps in the background, and it made me sad I was not there. I know she is very patient with him though. As I said before my aunt was a nurse for years so she knows Jude isn't in pain. The crying he has is either a part of the seizure itself, or because he is very frustrated with the involuntary movement. Anyway, we have been a bit concerned with his eating, although Jude is still gaining weight. So this morning my aunt said she got almost 4 ounces down him, and then she fed him a jar of carrots. I said "He ate the ENTIRE jar?". She said "Yes, is that a problem?". I told her that is wasn't I was just shocked because he normally just takes a few bites with his medication. I guess he wants more baby food, and is all for the more solid foods....he is his fathers son! So I was very thankful to hear that he had both formula and baby food. I am torn on how I feel about feeding tubes, so I am so happy that he is eating well. I hope he will continue to do so and will have a will to survive. I understand though that sometimes it just cannot be helped, and some children must have a tube to survive.
I enjoyed my day off yesterday, but I also remembered how much I miss my kids when I am not there. I am truly thankful though that Mike is at home with both of them. He is so good with them, and he now proclaims nobody can better care for his son than HIM! I said "Ummmmmmmmmm......... listen here buddy!" lol. So yesterday Jude had a seizure at my cousin Sarah's house, and my visiting family were able to witness it. Jude whimpered and cried while his body jerked, and we all rubbed on him. My cousin Candace said "I can deal with a disabled child, but this seizure thing has to stop! It's not fair" I told her I have said and written those exact words on this blog, and to others. There is no cure for these seizures. It's just a matter of hopefully finding the appropriate combination of medications, and then adjusting them as Jude grows.
Mike and I talked a lot this weekend, and that was nice. We talked about if Jude is in fact disabled how we will work with the house since all the secondary rooms are upstairs. I do finally have one thing on my side which is Mike being a contractor. He could easily and inexpensively close in my dining room to make another room. We could then convert our half bath to a full bath with railings, or whatever is needed. We are lucky that our walkways widths are enough apart for a walker. I am saying WALKER because our goal is for Jude to walk. I still have a lot of faith in our little Juders. In fact my family pointed out how he looks at whoever is talking to him. My aunt said in her years of experience as a nurse, school nurse, etc that those who truly had nothing working in their brain were expressionless. She said she had one boy that came in to the school on a gurney (oh my!), and that his pupils would not even react to light. When Jude is placed close to a lamp his squints his eyes. We have accepted the fact our child will be challenged, but we are hoping/praying that he will be able to function. Although she pointed out what I always say.....we will work with him and love him no matter what. She also told me of one child that you could tell had a lot of therapy. That is another goal of mine with Jude.. EARLY INTERVENTION!!!
So back to Mike and I........we also talked about us needing to work out and get ourselves back to normal because us being healthy is important too. We also discussed the fact that prior to all this happening we had discussed more than 1 child. I had wanted a little girl, but the thought of that now seems non existent. My pregnancy was so incredibly difficult, and then what we have been through with Jude, and financially. In fact after this we were on the NO MORE CHILDREN band wagon.... It's sad though. I hate that the only pregnancy Mike experienced was so very difficult, and all this after he had lost 5 other babies. (I had mentioned that his ex wife had lost several babies through ectopic pregnancies). Just doesn't seem fair does it? I really believe my pregnancy was so rough because there was something wrong from the start. My platelets read low in the ER at 3 months, but they didn't inform anyone until I ordered the records. Another thought of mine was "what if GOD FORBID we lose Jude I am not sure Mike would make it back". Having another child has led me down a path of "I cannot fall apart". Granted you have to break down sometimes, but I know Emmy is there, and therefore I have no other choice but to be strong. So I wondered if it would be good for him to have another baby at some point. Not to ever replace Jude, but to provide another outlet and hope. I am not sure either one of us could handle that though ever so the thought is always fleeting. Fear takes over, and the thoughts of even the slight possibility of going through this again reigns over how remote the chance is.
We then talked about if I returned to school, his photography he is so good at, finances, Jude, Emily, and then the Jack Russell terrorists started up in the backyard. Oh yes, they are still there my friends, and they are still very loud. Plus, they are very smart and knocked over the entire plastic container of dog food last night. Which was so loud it sounded like a gun shot, and scared me off the couch. Not only did they knock it over they can get the lid off and go to down. Plus, Lady has now figured out how to take her pet rock and throw it at the door to get your attention. She doesn't get her ball, or her rope toy, nope she gets a ROCK! They make me laugh though and provide me much entertainment.
So Em and her friends are still texting away, and she is still getting bigger right before my eyes! I am anxious to get home today, and see everyone.
Have a good day all.
Ps ~ I stay up with carebridge because of Jude's account. Please say a prayer for little Margaret in Missouri I think she really needs them today. I have been following her story and her mother was sweet enough to leave a message on Jude's guestbook. Here is her link: http://www.caringbridge.org/visit/margaretromph