PEHO?

Where does one begin to describe the feelings of the past two days? Sadness, Frustration, Hopelessness...I'm feeling terribly bipolar with depression. Yesterday Naysa had two appointments at Balboa, neurologist and geneticist. Neurology went well, she said to keep her at the dose I am giving her now and she added a vitamin to take once daily with her med. I told her I started somewhat of a ketogenic diet since Naysa is still breastfed, cutting out caffeine, alcohol and artificial sweeteners and it seems to have helped so she was pretty impressed by that and encouraged me to keep it up. The genetics appointment didn't go quite as well. After talking a bit she inspected Naysa, as doctors always do. She asked if her feet and hands have always been so puffy and I said yes, no one's ever said anything about them so I assumed they were just fat baby feet. I've been through enough doctors to know when they keep asking questions something is wrong, I stopped her mid sentence and asked what is was. She said the puffy hands and feet along with her infantile spasms are signs of yet another rare condition. Peho Syndrome. It's a neuro degenerative disorder of which there is no treatment and a poor prognosis with most patients not living past 15. She wasn't completely sure Naysa had this so we didn't discuss it any further, instead she got blood drawn and sent it off to one of the only two labs in the US that conduct the specific tests the doctor ordered. We now wait weeks for results and are left in anguish of our raw emotions. I don't quite know how to handle everything this time around so I will be seeking a therapist tomorrow. I need someone to talk to that doesn't know me, with whom I can say and feel what I want and need without fear of judgement. I need help, and I am not ashamed to admit that. I believe the shame comes when you do not realize just how quickly you are spiraling out of control and seek help when it's too late. The Murphy's Law of Deployment has also taken effect. Today was a tiresome day with getting the car fixed. The button on the emergency brake popped off a few days ago, which wouldn't be a big deal if we didn't have a manual transmission making the E brake the only way to park the car! It would work if you held the button on the just right long enough to pull it up or push it down but it came right back off once it served it's purpose. Having a VW they of course had to order the part so it came in yesterday and I took the car this morning at 9:30. The service manager told me it was going to be a few hours and offered me a rental car, which I gladly took because the dealership is ridiculously boring! I spent most the day with Faith and Haylee, which is always lovely :) 15:30 rolls around and I still hadn't heard from them so I called and they told me to be there at 16:30 to pick up the car, I was near by house and the dogs needed out so I got half way home and realized the garage door opener is in the Jetta! I didn't have a house key because a friend of ours house sat while we were in OK and I hadn't gotten my key back. They live right down the road so I drove over and asked his wife if she knew where my key was, her husband had it on his key chain and he is underway for a week! By this time it was about 30 minutes until I needed to be there to get the car before they close and traffic was awful, as it often is in San Diego. I rush to the dealership and as I am walking up to the office I hear Naysa making poop sounds, I look down at her and she is red with pushing (great! DAYS worth of poop...) SO, we had ourselves a blow out, yee haw! The best part is she was wearing a onesie that said "loading diaper, please wait.." I had to laugh about that, otherwise I might have cried! haha. The guys at the dealership were great though, he gave me my keys and said he would mail the paperwork so I could get on my way, I guess he saw how flustered I was. I am finally home and working on relaxing. Luckily I get to skype with the husband tonight so that should cheer me up :) Hope you enjoy the picture of how my day ended! :P