Maybe by a thread... but still hanging. My little trooper is still fighting so hard. He's been having good days and bad days, very inconsistently. And a good day is defined by standing up in his little 5x5 area and playing with his toys for about 15 minutes at a time. The biggest issues right now would have to be his eyes, his mouth, and his trach/breathing. And bath... I won't even go there. Terrible.
His eyes are just beyond horrible... there are no words. And they are only getting worse by the day... literally. He's becoming a little more frustrated as it gets harder for him to see each day. You can tell by the way he reaches for things, and brings his toys all the way to the corner of his left eye to be able to see it. Like I said before, the eye doctor said that his right eye already has half the vision of his left... and both eyes (the left one worse) have granulation tissue growing over his eyeball. The right eye is more than half-way covered. I've put a call in the the eye doctor... not really even knowing what I'm going to ask, but just making sure with him one more time that we have no other options. For this poor child to lose his vision along with everything else going on, is just borderline cruel.
His mouth just kills me. He's had teeth since he was about 3 months old. Imgaine how it would feel if you had never brushed your teeth for almost 2 years. I really just can't imagine how his poor mouth feels. Then on top of just "feeling yucky," he's got sores covering his lips and tongue. Not to mention, that he must have cavities and rotting teeth in there that I'm sure is painful. I fully understand the dentisit's concerns about putting him out and trying to do something with his mouth. It's somewhat the same deal as the eyes... if you irritate any of the mucous membrane tissue, it becomes raw and can fuse to any other surface. There have been cases in other EB babies, where after dental work, their mouth has been fused together completely, with tissue sloughed off in places. I'm not thinking I want to go there. I just wish there was something we could do. I've been using Biotene spray- but you can imagine how he loves that.
And his breathing- where do I begin? With this weather the way it's been... he has been SO dry. He can hardly stand up to play for 5 minutes without having to lay back down with his humidifier on. And no- he will not wear it standing up. Nothing can be "in his way" when he's standing and trying to play, including us people who are always in his face. So I've been doing breathing treatments, high steroids, changing his trach when need be, and keeping him on his humidifier most of the day... and he's still having the most trouble he's had in a while. I'm almost positive that it's the sore acting up below the trach. And I don't like that at all. But I'm doing everything I am supposed to be doing.
He hasn't left his little "comfort zone" in months. When he stands up, we ask him if he wants to go outside, ride his car, anything... and the answer is always "no." For a child who cannot speak, he SURE can get his point across. But there are also times when I tear up because he will stand up signing "more" and we try everything to figure out what he wants and we can't. He gets so frustrated and gives that pouty lip and wants to get back on the rocker. It's so sad. But MOST of the time, he can communicate with us very well and let us know exactly what he wants without a word. He can say "NO" very well (just like any other 20 month old can), and now his "yes" is tilting his head all the way back with a big huge smile. It instantly melts your heart.
On another note, I'm sure all of you are very aware that a child with special needs puts a strain on a marriage. Well, in our situation... that has surely been the case. Randy and I have been seperated since July and Tripp and I have been living with my parents (who have been A-M-A-Z-I-N-G). I have tried to be very respectful in keeping our personal issues off the blog, but I also know that it will be coming out sooner or later. I don't want to go into detail and I hope everyone will respect that. Both Randy and I love our son. And everything being done is in Tripp's best interest. I do, however, want to say thank you to Tripp's MeMe, who comes to help me at least 4 times a week- rain or shine, regardless of my good mood or my bad mood (which is hit or miss these days).
And thank all of you for your support- this has been a difficult time for everyone involved.
And with that... I will leave you with my precious angel...
whose smile gets me through the toughest of days.
Love,
