So it's Thursday and little Ms Sarah is back at work, and I am thankful. Sarah not only brings relief fielding all the calls, but she has made me laugh several times already. She got back in from town last night at 2am so the girl just shut her door, turned off the light, gathered a blankie, and is sleeping on lunch. Where is she sleeping you ask? Under her desk...ha! I told her she could have called me at 2am because I was up with Jude. I am not sure if it is the medication, the seizures, or just Jude wanting to wake up lately. The boy is seriously disturbing my slumber though, and we have to have a talk about this. Actually, I am grateful that he is there to disturb my sleep. Since I am working full time Mike normally gets up with Jude, but it still wakes me up to. Yet last night I think Mike was so worn out he was just not waking up so I got up with little Juders. I put him in bed with me, and he went sound to sleep again. He then had a seizure about 4:40am, and then another about 7:15am. Neither one of them were terrible, but they are still disturbing. I talked with Mike a little while ago, and it seems Jude is still slow in eating today which I believe is a side effect of the Topamax. I am hoping that Jude will adjust to the medication, and begin to eat normally again. I think I am more at peace with our situation now, although I still have a variety of emotions that break through. My life will start to function with a normal pace, and then my mind will refresh itself that it isn't normal. Then I remind myself that it is normal just in a new way...make sense? No one plans to have a special needs child, or have a difficult pregnancy. So as a re-cap ECI will be out again next week, and we will get on a formal schedule. Then we have the neurologist appt on the 28th, and we have another neurologist we will see for a second opinion. I am still SUPER encouraged that Jude tracked all those bubbles last night.
So my family will be here Sunday. My aunt who is a registered RN is coming to help us a bit with Jude. Mike needs to finish up the large job he was overseeing in Stephenville, and needs to complete some errands. I know Mike trusts leaving Jude with my aunt. I think he trusts her more than the Respite ECI can provide, and I do too. In addition my friend Kels bday dinner is on Sat night, and I am going to try to drag Mike out for a few hours. I think it is healthy to have some us time, and it's needed. Neither one of us likes to be gone very long.....but we have to work on us too.
Ok now on and Emily note....this ones funny. Yesterday Mike called me at the office telling me that Emily and her friend Addie, just showed up at the house with some little boys. He said Emily was providing a tour of the house "this is my room, this is Jude's room, etc". Mike said one of the boys waved at him "Hi sir". Mike wasn't sure who they were and just waved back silently. He then got up to go explore who the new kids were, but when he walked out he was attacked by the overpowering smell of roses. He finally figured out Em and Addie must have gotten into my perfume...to smell pretty. BWAHAHAHA! I sighed when Mike told me this and said "isn't she to young ". He explained it was all innocent, and just normal kid behavior. So later that night I come home, and Emily comes running up to me saying "Mommy, a boy moved in across the street and it finally happened I FINALLY found the boy I love". Trying to control my laughter I just reply "Um finally? honey you are ten and you are way to young to be in love". She said "I know, but he is funny, and nice, and he is my friend". So soon there was a knock at the door, and low and behold there stands the little creature coveting my young daughters heart. I let him inside, and another knock followed, and here comes Addie. Our upstairs was swinging away to the sound of rockband until about 7pm when I shoo'd everyone home. I was glad Em was having normal kid time, and just as a note the boy is funny! He came downstairs to entertain me at one point, and he received a few laughs.
Jude has a caring bridge site set up now. A few people have sent me the link to fill one out, but I just haven't because I have this blog. After receiving another link today, I went ahead and set one up. I have heard hospitals do have direct access so it might come in handy someday. Also, there is a guestbook for people to sign who don't access my blog all the time. I wrote this one from Jude's perspective vs mine :). Here is the link: http://www.caringbridge.org/visit/judeortiz. Please stop by and sign the guestbook.