And, here's the continuation of my list, the last 5. For this 5, I decided to do 5 medically related topics...just because.
6. Vicki dislocated her elbow when she was 18 months old. We took her to the ER and the ER doctor couldn't reduce it. They sent us home with her elbow hanging ickily (my new word) by her side. She laid on the couch and never cried. It took 24 hours for her elbow to spontaneously reduce. She is one tough cookie.
7. Vicki has been to lots of doctors in her lifetime. She started out with the NICU team when she was born, She's been seen by neonatologists, pediatric cardiologists, her regular old pediatrician, multiple developmental pediatricians, audiologists, neurologists, psychologists, endocrinologists, geneticists, neurosurgeons, otolaryngolist, ophthalmologist, optometrist, allergist, and a few others that I am sure I am missing. No wonder she doesn't like to go to the doctor. :(
8. Vicki has had lots of different therapies over the years... from more traditional speech and occupational therapy, to therapeutic horseback riding and listening therapy (using the Tomatis Method for retraining the ear), She's had ABA therapy since she was 4 years old. We've dabbled in vision therapy and pharmacological interventions (that have included chelation and B12 injections that we had to give her every 3 days for a few years among other things), as well as allergy shots. Some interventions have made a tremendous difference, others not so much. Sometimes it is difficult to ascertain whether a new medicine or treatment protocol is working or whether a zillion other factors could be the culprit or savior. I think one of the most difficult thing as a parent is feeling like you are never doing enough or doing the right things. Unfortunately, most of the above mentioned interventions have not been covered by our insurance and we've had to pay 100 % out of pocket. That's so commonplace and so sad. For example, right now it is being recommended to do IVIG treatment for Vicki's PANDAS. It stinks that we have yet to get our insurance to cover this. Sigh.
9. Vicki has an official diagnosis of Autism ,Seizure Disorder and PANDAs. Unofficially she has a diagnosis of an infectious laugh and a twinkle in her eyes and a spring in her step. ;)
10. Vicki has been in the hospital a few times.. Of course, when she was born she was in the NICU for 7 days and received 2 complete blood transfusions. She had tubes put in her ears when she was 5. She was admitted to the hospital in 2010 for a few days - that's when she was diagnosed with seizures. She has had (I think) 2 sedated MRI's and was in the hospital 2 other times for 24 hour EEG's. She will be returning at some point tin the next few months for another sedated MRI. She has a small mass next to her pituitary and they just want to keep an eye on it to make sure it doesn't get bigger. One of the most amazing things I have taken from her hospital stays is the phenomenal staff that has worked with us, especially the hospital therapeutic play staff. In 2010 when she was admitted for seizures... Joey and Ally were pretty scared. I remember the therapeutic play specialists bringing big buckets with the kids names on them with dolls and all kinds of hospital supplies... masks, bandages, gloves, those little green mouth swabs. You name it, it was in there. They answered questions patiently from the kids and they brought Vicki all kinds of cool stuff to play with in her room. They gave Vicki a new bottle of red nail polish, lots of play-doh, and so many more things. I wonder if these wonderful people know what a difference they made to our whole family that hospital stay.
Anyway.... that concludes my random list. You see the good and the bad and the happy and the sad. I bet if I asked Vicki to list things... she would list her favorite Disney princesses and foods- especially fruits and veggies. Maybe I'll have her do that today as we wait to see the neurologist later this afternoon. xoxo
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