Ok, so I swore I would be more diligent about posting...and I really don't know what happened to the time.
In the past month, Sadie locked me out of the house. Apparently, occupational therapy is doing a great job...she was able to turn the dead bolt behind me when I walked on our front porch to wave to our neighbor. Lucky for me, my husband was only 5 minutes away and saved the day. Needless to say, we have a spare key now.
About two weeks after that Sadie was also able to lock me IN Shelbi's room. Long story short...Shelbi is in a big girl bed and we put a lock on the outside of her door to keep her inside. Yes, I know most people would say that my child knows to stay in bed until I come to them. Well, Shelbi's been in a queen bed since she was 15 months old due to her ability to climb and also the desire to not be caged in a crib. After a terrifying few minutes my neighbors heard me screaming out the window and came immediately...using the spare key to get me out. I immediately ran to our bathroom and Sadie is standing in our shower with Bill's razor in one hand and his toothbrush in the other...Conclusion...the lock is now higher up out of her reach.
Facts...the developmentally pediatrician continues to track her at 60 to 50% of her chronological age...12month old in language, feeding, mentally, etc. and 20-24 months in play/social skills. We all know she is so happy and social. Genetics pediatrician encourages us to do all we can for her, but understanding we need to have realistic expectations about her development. She says that concerning her curve of development and considering her age...we need to be realistic about how far we stress her/us out by pushing too hard. She encouraged us to find a balance between their appetite stimulant medication and allergy medication. They are both antihistamines. Orthopedic Surgeon believes at this time the tibia torsion surgery is not in her future and that Sadie's toeing-in is because of her very flexible hips. He discourages the "W" sit position. And so do we...."Fix your feet" is the catchy phrase we use to help her realize she's sitting that way as recommended by her private PT, who is awesome!!!
She is currently prescribed Prevacid 2 times a day (morning and bedtime), Claritin once a day at bedtime, and Periactin once a day at lunch to increase her appetite.
My only hope is that people continue to understand Sadie...so much is assumed because she looks so normal. She is a 4 year old with a 1 year old understanding...She is 100% dependent on her care...diapering, changing her clothes, predicting her wants and needs (she is non-verbal), drooling, high calorie food, her safety...she doesn't see danger. She is getting bigger and more things are becoming a danger to her. She can now reach things she never could before, locking doors, climbing. Nothing can be left unattended...she still puts things in her mouth...she is a stuffer. She would unroll the toilet paper...it is stored in the cabinet. She knocks over open drink containers. She sucks on the soles of shoes if they are left out. She doesn't understand hot and cold. She can reach the stove from the other side of the counter. She is now exhibiting stim type behavior...banging her head with her hand...like Dustin Hoffman did in "Rainman." She doesn't always see depth perception and often falls down the step in our house into the playroom. She can't be unattended outside...she puts sticks and wood mulch in her mouth. She literally choked on a piece of mulch last summer and we had to throw her upside down and do back blows. She has almost zero reflex skills for self protection. We start to lose our balance and we can catch ourselves, she will simply fall and hit her head....She doesn't eat well...remember those days when your child is 1 year old and you are encouraging him to eat the peas, but he just doesn't want too. You somehow think if you make that food and airplane that he'll eat it...Sadie is like that everyday every meal. Every meal, I mean every every meal...I pray she will get enough to at very least sustain her weight and hope she might gain a little
This list goes on and on...I don't write to be negative or vent...just to be truthful in the reality of a day with Sadie. Not that its important to me that people understand me or her or our family... I don't want sympathy...but maybe some empathy for life...Some gratitude about how lucky you are and our friends are to have a "normal experience" with their children. In many ways, I've become cynical about other people gossiping about the stupidest things. Or even complaining about the most trivial of life's issues. Or assuming and questioning why I don't go back to work...people let me tell you...I can't go back to work...Sadie is a full time enigma...school, therapy, doctors...scheduling...it goes on and on...I'm just sick of the smart ass comments about how nice it might be to stay home... I'm sick of the comments oh, I'd be so bored if I stayed home, or the smart ass comments "oh that must be nice" I just think that the old rule should apply...if you have nothing nice to say then say nothing at all...or what ever happened to the basic thinking before you speak. I just can't believe how many rude people there are...friends that actually say "oh, I'm so retarded." A friend of mine actually said, you know that's my word. Come on people, you can't be serious...have a heart...Sadie's medical diagnosis is mental retardation...politically correct or not...please get the picture. At anytime, someone could become brain injured...please don't take that for granted and be mean to people who can't help themselves.
