Sunday, August 30, 2009
Saturday, August 29, 2009
These are from a few weeks ago. He is still a little timid with walking and does it best when he isn't thinking about it. Like if he spies one of Isaac's treasured possessions and wants to make a B-line for it. He just goes and doesn't give it a second thought. Of course we never have the camera ready then! We have not been pushing the walking (we don't stop him either) too much lately because I am not sure if it burns more calories that he sometimes can't spare. Seeing him progress to walking is awesome and gives us hope for a more normal future for him.
It was hard to leave the boys, especially with JJ's recent weight loss but he is good with Daddy. And I will be refreshed and feel good about having spent time with my mom when I go home tomorrow. I have been so stressed and sleep deprived the last few weeks and will probably be so much better with these few nights of uninterrupted sleep. My mom and I are talking a lot about my dad and enjoying each other too.
Thursday, August 27, 2009
Lots of shots are in the future for my guy too. He needs 15 m vaccines and the a shot to prevent RSV every month for 8 or so months. Today he actually was happy to visit the doctors and did not cry about being there at all. I guess that will change again soon. Shots are not a big deal after all he's been through, but we still hate to have him keep going through more at his sensitive but so aware age.
Saturday, August 22, 2009
Thursday, August 20, 2009
I have been fortunate enough to email with a woman who has a 16 year old with ALCAPA repaired, the same defect that Jerry has. She found my blog through google and commented and we went from there. She is the first person I've "met" in the same situation and it has helped a lot to email with her. I read her blog and it I have to say it was kind of amazing. I felt much more emotion (fear, sadness, tension) more strongly, than I felt going through everything with Jerry. It is like a component of detachment that serves as a survival mechanism I guess. With Jerry, I really can't completely accept what is going on and still function in the best way possible to take care of him and our family. When I mentioned this to Jackie (mom of child with ALCAPA), she understood.
Here is something from Jackie's email on the whole eating issue:
Eating was a big issue. You have my sympathy. She came home with an ng tube and had it for around a year and it took some time to wean her from it and on to a proper diet. There were days when I thought she would never eat normally, she eat tiny amounts and was so fussy. These days she eats well in quantity; it isn't very varied, but you know, she's a decent weight, well in herself so I'm not going to worry about it. She doesn't seem to remember anything of it but I think there are some underlying control issues and maybe some deep, bad memories about how eating made her feel as a baby. The drs say sucking would have given her angina so I think they must relate food to pain on some level.
It is so hard to hear about and be reminded of all the pain JJ has gone through. Of course, we were in agony already because it was obvious something bothered him about eating since he was diagnosed at 3 weeks old. It is still hard to have it confirmed and know that every time we tried to feed him he knew pain was coming. And the way he would start to suck and then back away changing his mind. My poor guy had to decide if chest pain was better or hunger pain. Tough. Hopefully, this will be all behind us soon. We are always tinkering on the edge of needing that ng tube and maybe things would have been better or easier earlier on if he did have it. But I am glad we haven't and hope we won't have to go there.
Pictures and videos hopefully this weekend.
Tuesday, August 18, 2009
Thursday, August 6, 2009
Wednesday, August 5, 2009
Monday, August 3, 2009
A few cute videos. When we wouldn't give Jerry his walker toys and he wasn't supposed to be that active yet, he started using this other toy as a walker. Now he is allowed to go and he is! He is taking 7 to 8 steps several times a day. He seems to stop when he realizes he is walking alone. It is really fun and amazing to see him like this from where he was six weeks ago! Thanks everyone!