So it's been awhile since I have updated this. The girls are doing pretty good. The twins graduated from Pre-K. They are so excited to go to kindergarten in the fall.
Kadian will be going to 2nd grade. The school year seemed to fly by. Kadian got the A honor roll for the year. She was also accepted into the Gift program. She will start this coming year. Medically she is about the same. We have found that none of the medications are helping with her bladder issues. She has adverse reactions to the medications. The doctor wants her to try Urinary Biofeedback. Hopefully it will help because we are pretty much out of other options.
Lauren is doing OK medically. She hasn't been sick or hospitalized in a while. She is still having muscle weakness but she will always have that. She still doesn't want to wear the braces on her legs. The geneticist said if she continues to toe walk her thigh muscle will start to get weaker. This could mean she would need a wheelchair eventually. Hopefully she will realize how important it is and that they will help. It is a real struggle to get her to wear them. She cries the whole time they are on. We have tried different things to get her to wear them. She is still drinking Portagen out of a sippy cup. I am hoping I can break her of the sippy cup during the day. She will drink everything else in a normal cup. Not sure if it is a comfort thing. She says it tastes gross in a cup. Maybe its not mixing well enough.
Onto to Sean...Sean has been informally Dx with MS. He has spinal lesions but no brain lesions. His spinal tap indicated MS but the his symptoms aren't the "typical" MS symptoms. Plus with the size of his lesions his MS should be worse. He went to the Mayo Clinic a couple weeks ago. The doctor there is unsure if it is MS or an autoimmune disorder. His ANA blood test was elevated and WBC was low. She wants more blood tests done, a better brain MRI, and a chest xray. He goes back to the Neurologist at the end of the month. Hopefully we will know more then. He is in ALOT of pain ALL the time. It is heartbreaking to not be able to do anything to make him feel better. We are hoping they will start treating him soon. He is constantly tired.
It all seems so overwhelming at times. I think if I didn't live my life ,I would wonder if all this could possibly happen within one family. We often question if all this could be linked to one Dx. It is hard to research to see if there is a link b/c so many disorders and illnesses all have similar symptoms. Lauren's disorder is so rare that most doctors do not know enough about it to really say if they are all linked together. I hate waiting and seeing how things go. Not knowing what's going to happen gives even more anxiety. I like to be able to plan out what we are going to do. We still don't know what the Navy is going to do with Sean. We are hoping they let him stay in till at least 18 years so he can retire with his full benefits but we aren't sure if that will happen.
Kadian will be going to 2nd grade. The school year seemed to fly by. Kadian got the A honor roll for the year. She was also accepted into the Gift program. She will start this coming year. Medically she is about the same. We have found that none of the medications are helping with her bladder issues. She has adverse reactions to the medications. The doctor wants her to try Urinary Biofeedback. Hopefully it will help because we are pretty much out of other options.
Lauren is doing OK medically. She hasn't been sick or hospitalized in a while. She is still having muscle weakness but she will always have that. She still doesn't want to wear the braces on her legs. The geneticist said if she continues to toe walk her thigh muscle will start to get weaker. This could mean she would need a wheelchair eventually. Hopefully she will realize how important it is and that they will help. It is a real struggle to get her to wear them. She cries the whole time they are on. We have tried different things to get her to wear them. She is still drinking Portagen out of a sippy cup. I am hoping I can break her of the sippy cup during the day. She will drink everything else in a normal cup. Not sure if it is a comfort thing. She says it tastes gross in a cup. Maybe its not mixing well enough.
Onto to Sean...Sean has been informally Dx with MS. He has spinal lesions but no brain lesions. His spinal tap indicated MS but the his symptoms aren't the "typical" MS symptoms. Plus with the size of his lesions his MS should be worse. He went to the Mayo Clinic a couple weeks ago. The doctor there is unsure if it is MS or an autoimmune disorder. His ANA blood test was elevated and WBC was low. She wants more blood tests done, a better brain MRI, and a chest xray. He goes back to the Neurologist at the end of the month. Hopefully we will know more then. He is in ALOT of pain ALL the time. It is heartbreaking to not be able to do anything to make him feel better. We are hoping they will start treating him soon. He is constantly tired.
It all seems so overwhelming at times. I think if I didn't live my life ,I would wonder if all this could possibly happen within one family. We often question if all this could be linked to one Dx. It is hard to research to see if there is a link b/c so many disorders and illnesses all have similar symptoms. Lauren's disorder is so rare that most doctors do not know enough about it to really say if they are all linked together. I hate waiting and seeing how things go. Not knowing what's going to happen gives even more anxiety. I like to be able to plan out what we are going to do. We still don't know what the Navy is going to do with Sean. We are hoping they let him stay in till at least 18 years so he can retire with his full benefits but we aren't sure if that will happen.
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