Monday, June 24, 2013

summer is officially here

summer is here which means that it is getting hotter. on Friday i called her pulmonologist and they put her on an inhaler in hopes it will help her breathing at night. i can definitely tell when she is on asthma meds because she doesn't cough and is breathing so much better. this also means that she has a hard time breathing during the day when it is hot outside so she only plays for a little while before she comes in and takes a break. she hasn't been sleeping well again. guess i should have seen that coming. its like a cycle that keeps on repeating. she was suppose to have a sleep study done last monday but she refused to get hooked up so we came home and i requested to try somewhere else that might have more experience with special needs kids. so we are being referred an hour and a half away. dont have a date yet but hopefully soon we will. next sunday we are going on a trip so hopefully she does well on the trip

Thursday, June 13, 2013

many updates

On Monday I took lexi to the pulmonologist and her developmental pediatrician. The pulmonologist didn't say much about her not sleeping that we will wait to see what the sleep study shows on Monday. he did decide to start her on prednisone to see if the cough she constantly has might be asthma related. since she started on the med her breathing has gotten better especially at night. she also isn't coughing which is finally nice to be able to say. i will have to call the office tomorrow and tell them the med is working and they will prescribe her an inhaler to use. she is up to 36 lbs so that's a good thing. the developmental Dr was very nice this time. she said she doesn't want me to fight with lexi about potty training. she wants to give lexi a break and see what happens. she also has referred us to get her eyes checked, her hearing tested again and to see a neuropysch doctor in July or around then. i also talked to the Dr about getting lexi seen by the neurologist there because in that office you see the neurologist and not the nurse practitioner which with the neurologist she sees now lexi only sees the nurse practitioner. so i'm hoping they will get her into see that doctor soon. the doctor is also requesting to see a copy of her iep because she doesn't the school is going to be helping lexi enough next year and from her words shes very worried about her. which i am too. iv been saying that since day one but the school says if we place her in a special needs class then its going to be too restrictive. i guess we will cross that bridge when we get to it. summer update. lexi has been getting to go swimming with her babysitter and she is doing good with being in the water. the babysitter says shes like a little fish now. so awesome since she doesn't like baths. dont get me going about that one. she started summer school today and its only one day a week. im hoping it helps her a little more. the first week of july me and lexi are taking our own little vacation. its going to be an adventure but im ready for it. me and her deserve a much needed break. especially from work and everything it will be fun to get out and do some things. wont be a huge vacation but a little get away. i just hope the weather is nice and warm for us.

Sunday, June 2, 2013

sickness

well lexi had a virus that resulted in her puking over 5 times very violently. poor girl just wanted to sleep instead of getting sick. then to top it off i have lost my voice and lexi thinks its funny when i try to talk to her because my voice sounds very funny. sad to say i have never had my voice sound this way but i guess this year i get sick with the weird things. other than sickness going around lexi is doing good. shes been talking more since she got the ear tubes placed. you still can't totally understand her but its getting better. her seizures are still occurring but hopefully the nurse practitioner will either up her med even more or try a new med. so hard watching her have a seizure. her anger issues are still happening very often. i have noticed a new symptom where she starts sweating for absolutely no reason or she becomes very clamy like her body cant regulate her temp. its very odd