Oh my goodness

So today was nuts! I started out thinking that I was going to do some school work but I didnt even have a second. The deal is that I had to aquire all the equipment that I was going to need at home and get trained to use it before tomorrow and then we could get discharged tomorrow. So I started out calling around looking for the scale we needed. It had to be a digital scale that measured to a tenth of a gram, and have a power cord in addition to battery power, and be portable. I called resteraunt supply stores and kitchen supply stores and even regular stores like target and no one had any scales that had all three things that we had to have. Finally I decided to call a little store called The Stash. I knew that I had seen scales there so I called and they had a perfect scale that had all three for 70 bucks. My Dad halped me out and went ot pick up the scale and then had to go to medical supply store and pic up the glucometer to test her blood sugar. He came to hospital and also brought the new CARSEAT. It is amazing and designed for disabled kids and goes up to 105 lbs. As soon as my Dad left the hospital the medical supply place called and said they accidently forgot to give him all the supplies for glucometer and pee sticks. I had ot call Hush and get her to go all the way back there and pick those up and get them her so that I could start getting trained before it was too late. SO got all the supplies and was waiting and waiting and I stepped out of the room for 5 min and I missed the dietician so I cant get trained now til tomorrow. CRAPPY! Good new is Hush and I poked ourselves and it didnt hurt at all and we tested our pee and we are both pretty healthy although we both have elevated Ph levels. I am exhausted and overwhelmed.We figured out that the pumps have been beeping every ten minutes because they mixed the formula wrong. Exactly why I need lots of practice before I leave tomorrow. I had to talk to like ten different people to figure out insurance and the new Keto cal formula for Baybe and I think that is finally ok as long as they show up to deliver it before I get home. Baybeblue aslo developed a new sore on the side of her foot. Its a huge swollen lump thats all red. Its not even where her IV was its onw the other side where there was tape so its another reaction so we have to realy keep an eye onit , it might be infected.

So first thing in the morning I will be trained to make her special formula with the scale, poke her and test her blood every four hours, and how to test her pee every diaper with the new test strips. As long as everything goes well we will be home by tomorrow night. Im really gona have to make such a detailed schedule of meds, food, tube care, blood,n urine. She is now on Depakene/Valporic acid, Topamax, klonopin, levacarnitine, Vitamin B6, Vitamin supplimant, and zantac. It will be interesting to see if I have time to do anything else for the next few weeks. I am praying that Baybe is strong enough to fully adapt to this diet. We are basically reprogramming the way her body functions completely. This is crazy but there have been so many miracles with this diet we are excited. I am excited to get home but at the same time I am very nervous. I had an anxiety attack over it today when I went for a walk. Im nervous something else is gona go wrong and I just dont have any strength left. I think Im doing a pretty good job pretending like I do though and I truly think thats half the battle. All I can do is trust god and the world and hope every second that I have made the right choiced so far for Baybeblue. She is so amazing, I would like to get her baptized when we get out of the hospital if anyone would like to join us then leave a comment. And if anyone can tell me how to make my blog read from top to bottom instead of bottom to top i would really appreciate it. I dont like it like this and I cant figure out how to change it for the life of me. Have a good night hopefully I get to sleep later than 4am/