Thursday, May 21, 2009

Terrible Two?? Wonderful Two!!

Well, his birthday is coming up. We have noticed he is very vocal now and cries when he is not HAPPY. It is really cute to see him with his little tantrums. It always makes me smile to see him cry unless of course it is cause of a seizure or something hurting him. He also had his first dental appointment. He totally hated it of course. He put up a fight---way cute though. Funny how the little things are appreciated. Heatlh wise, he is doing ok right now. I'm not really happy about his seizures but he is not as bad as he has been in the past. He is now putting up a fight at night giving us a hard time when we put the cpap machine on him--little stinker.
These last couple of days he has been smiling a lot, especially late evenings. He hadn't really been smiling I guess because he wasn't doing so well with all that was going on with him.
I sit him up against the sofa and he loves it. He looks around and is so peaceful. Usually when he smiles it is at random times. However, two days ago he was actually responding to me. For at least five to ten minutes while playing with him (kissing his hand, talking to him, shaking his arm, and lightly rubbing his cheek)he was actually smiling and teasing me by turning his head towards me and away from me. I was so emotional just knowing that my baby was actually playing with me. It was such a GREAT feeling. At one point I got so emotional that he heard me and thought I was playing with him so he smiled even more. As I laughed and cried his smile seem to widen even bigger. SO So cute. It was the best feeling in the world. I just pray for more of those moments with him. It's crazy cause the day before I had just visited a friend who has a baby under the age of 1yr and it was hard seeing his interaction with others. I tried to get over it and was actually playing with the baby for a while and was making him laugh. It lasted for a while until I knew I "hit my limit". Then the next day the Lord gave me this little miracle. A little bitter sweet though. I pray this is just the beginning... another step

Saturday, May 2, 2009

Joshie the tough guy

Well, he has been sleeping better with his new little cpap machine! Oh my gosh who knew how great it would be to go to bed at 11:30pm or even 12:00 midnight instead of 1:30 in the morning. Yes, our little routine would be to stay up until he could no longer stay awake and fall asleep at 1:30am. Now he has been sleeping by 11:30pm and some days even a little earlier. He also looks so peaceful now when he is sleeping. The only thing now keeping me from falling asleep soon after he does are his meds. He has a couple that are given at 12midnight and 1am. I try to stay up so I won't miss giving him the meds or I at least bump them up a little. However, it has been great knowing it is ok for me to fall asleep and not worry so much about his airway collapsing on him in the middle of the night. The way I sleep, I probably need a sleep study done on myself(ha ha)! I wake up for every little noise now because I am so use to listening out for him. His seizures unfortunately have not really improved. Actually it is always like clock work. He always seems to have them at 4 am and it wakes him up. I then calm him down and he falls back asleep. I hate it! He also gets them throughout the day. I want to start the ketogenic diet soon if this does not improve. We have tried almost all seizure medicines there are to try so far.

Joshua has been sick this week. His lungs have sounded a little wet. Secretions have increased again and he is struggling to clear them. I think he might have caught a cold. I have had to give him oxygen at night (or while sleeping). He also had a fever. I'm trying to keep him at home as much as possible and avoiding all the "sickness" going around right now.