After my last post William and I spent three days at Strong Memorial Hospital. William needed fluids to rehydrate via IV and also some blow by oxygen. He had a chest x-ray which showed broncholitis and continued to vomit in the emergency department; so we were admitted. Although I do not like bringing William to the hospital I must say that the nurses and doctors we have worked with have been wonderful. I will not hesitate to bring William back to Strong if I think it is in his best interest. Would I rather keep him at home? of course! but I don't have oxygen, IV fluids, or nursing care available at our home.
I have to say that since being discharged we have had a very difficult several weeks. William has still been vomiting far to often, still seems congested, borderline dehydrated (according to the urine chem strips); often refuses fluids and has had some awful seizures. I am so sleep deprived that my ears ring and I have no idea if I am spelling correctly!!! William, I am sure, is feeling even worse; poor guy....
We have been working with the Ketogenic dietician weekly to fine tune this diet and try to control the seemingly worse seizures. I am prepared to continue with the diet for another couple months. We will see what changes Spring brings....
On a positive note; I am taking William to be evaluated for aquatic therapy with a physical therapist at CP Rochester on Monday! I am excited about giving him some new opportunities for growth and of course to be in the water. Lets just hope he does not have a seizure and vomit in the pool!!
William and I are also starting another round of visiting preschools for next Fall. I would really love for William to be part of a preschool program and receive services outside of the home next year. Our PT recently told us that he feels William has not made any progress in the past six months and that if I choose to keep him home in the Fall he is only recommending consult PT visits once a month!!!!!! This said when my son does not roll, sit, stand or walk..... I am a little angry....... I have had time to process this and have some thoughts to share with this PT on Monday. Not only has it been winter time when many medically fragile children struggle with health alone but William has also had a very difficult time adjusting to the Ketogenic diet. To say that he has made no progress is harsh. William is a fighter and is always making small gains.... large motor is just very difficult for him given the area of his brain malformation. He is grasping much better with his fingers and making more consistent eye contact. He smiles more despite having such a rough winter and pays more attention to books and toys.... He also seems to be gaining a little more strength in his trunk.
So keep tuned.... Let see how March goes!! Hopefully Spring is just around the corner....
well that sucks...
ReplyDeletei do hope that willie can get out for school in the fall, but if his medical status doesn't allow it, that is totally unfair to cut his PT.
Good Luck with swimming! If you see Karen or Stephanie, tell them we say hello!!!! :)
the pool at cp is great! I hope that works out! I loved CP as simon's preschool, I would love to see william go there! let me know if you have questions about it...
ReplyDeleteand as for the PT, I would write down all the areas where you see progress, those things that only us moms notice bc the PT is probably only focusing on the areas that they have goals written for....maybe if "no progress" is being made toward his PT goals then the goals should be modified to be more appropriate for william....
I think william getting out for a few hours of preschool would be great...for him, BUT for you too!! And...if you are applying to CP get your application in soon! They fill up ....