I am a bit overwhelmed today. Sometimes I feel like no matter how hard we try to deal with Jude's issues in a positive manner we get pulled into negativity. I am sure that it's lack of sleep again that's talking. Jude was up until 2:30 last night, and Mike was beyond frustrated so I took over. Sometimes I am not sure which direction to step to help Jude, and which direction to step to keep the rest of us sane too. Today I am looking into getting Jude a bath chair, a pediatric car seat, and he will eventually need an adaptive stroller. So the question is.......where do I find that stuff in DFW that accepts medicaid provided through MDCP. I also have personal insurance for Jude, but I believe this goes through MDCP. I get lost, and by not being at home I feel even more lost. I am sure if I was there for Jude's therapy I would know more about where I need to find items to help him. I am also setting up Jude's follow up vision screening with the pediatric opthamologist. In addition he still needs to see the pediatric hematologist. I can say that the reason for Jude's stroke is not relevant, but is actuality it is. #1. I need to know if Jude had any blood issues that could potentially lead to another stroke. #2. If there is something underlying (like my platelet issue) and if so, can this information help other children in the future? #3. Does he have any issues that need to be treated? I guess it's a pleothra of questions that need to be answered.
So it should be a week filled with appointments, and information. Jude ate pretty well while I was at home, but he is still resisting the bottle at first. He literally throws a hissy fit, pulls away from the bottle, and then will finally calm down and eat. You have to keep the bottle in his mouth until he gives up, and eats. Regarding baby food he will eat some of it, but only after he has acted like a sprinkler, and the feeder is coated in food. If anyone has had feeding issues like this before please let me know what you found out.
Jude will be one in September, and his next neurologist appointment is August. Since we will be approaching his first birthday we will be looking into a new EEG, and a new MRI. I am afraid they will have to put Jude asleep for the MRI, which scares me to death!!! I may request the MRI at cooks, and have the information sent to our doctor in Plano.
So without further delay here are all the pictures I promised.
Emily dropping off her smile boxes at Cook's Children's Medical Center:
Emily, and Jude at the zoo:
Emily, and Jude "watching" fireworks from her window:
Jude practicing keeping his head up:
So last night some of our friends came over Natalie, Andrew, and their daughter Camille. We had a great time talking, and they have been such huge supporters of Emily's Smile Boxes. We watched their little daughter play with Emily, and laugh herself silly. Em had such a great time playing with her, and "babysitting" her. Em was literally out of breath at one point, and looked at me saying, "wow babies are hard work". I just slightly grinned as I looked at Jude on the floor just laying there. He didn't do much. He didn't run around, giggle, sit up, or anything that Camille could. I felt sorry for him, and for us, but then shook it off as I picked him up. Jude looked into my eyes as I held him close, and it's like he could communicate with me. I believe that there is an instinctual nature for a mother to protect, and communicate with their child. I wished Em could share in more playful moments with him, but I know she loves him with all her heart. We were so happy they came over, and Camille took a liking to Jude's yellow chair. In fact any time I put Jude in there she would want us to get him out. Here is a picture of her telling Jude to get out,
It was sooooooooo cute!!! She is just precious. I truly enjoyed their company.