Hello my fellow followers. It's been one of those hectic days where the things that need to be done seems like can't be done because its only one Me with a lot of different hats. I just came back from taking Lj to the doctor again who informed me that Lj is having trouble with his lungs. He has already had Croup 3 times this year with fluid building in both ears. He needs to take steroids for the next 3-5 days and a nasal steroid for everyday use along with his Flovent. I was told to take Lj back to Pulmonology and ENT quickly. Outside of that I have to work 3-12 hr shifts the next three days straight. Which means I will not get sleep between getting both boys off to school and getting things ready for them for the night. I so overwhelmed trying to make sure that things are taken care of. I have to work to provide but my doctors suggest not working because my illnesses are getting worse instead of better. With no state assistance I am trying to stretch money for bills, food, insurance and so on. Lj case is still pending for SSI and it seems the judge wants to continue to give me a hard time. I need to call off work for tomorrow because Lj is sick but I can't because bills are due. What is a mom to do in cases like this. It is more than frustrating to know I have to choose between working and being home with my son.
Lj will be turning 4 in 10 days can u believe it! I know I can't because unfortunately I am always worried about him, so time just passes by. He is still attending OT and Speech and he gets PT at school. he doesn't get it as much because he has a lot of weakness for some reason. He is still undergoing test because his CPK levels are still increasing and its at 369. He still has spouts of severe tiredness and is still at a plateau in speech and occupational therapy. He still only plays with cars but it has pushed over into Transformers of course because they are cars. No other toys interest him. He has regressed in his Sensory struggles. He fights to get his teeth brushed. Hates his hands dirty, clothes dirty or wet. He hates socks on his feet and is always taking his pants off. He bursts into songs from his favorite movies (even though the words are not always clear) and still answers questions with lines from his favorite movies. He is a happy little guy but still struggles a lot with loud noises, bright lights, temperature changes(especially COLD) and any change in routine. He attends preschool and still just mimics play with other children. His current diagnosis are Mixed Developmental Delay, Expressive and Receptive Language Disorder and Pragmatic Language Disorder. His diagnosis of PDD-NOS changed because the doctor says he has goos eye contact and learns very well. all of his therapist say he seems to have Autism Spectrum Disorder but he passes the ADOS. I was told to teach him the things in so he passes very time.
Footbal season has ended for him. They lost their qualifying regional game. He loves football. His grades has come up but his anxiety is crazy. He is worried about me and my illnesses and his brothers health overall. He knows I have a neoplasm and he researched it so he knows what can happen. He has been doing good with trying to control his anger and impulses. He has been seeing therapists to help him cope. His report card had 3a's 1c and 3b's. what's getting. Him is his specific LD in Reading. The school is still giving me a hard time about it and refuses to put it on his IEP. He still has a 504 for his ODD and mood disorder.