2nd blog, Still catching up on our story

I want to start today by saying sorry for all the negativity in my first blog. I want to be honest in my blogs so maybe someone can relate, because the fact is friends and family haven't experienced much of this so they cannot. The fact is having multiples isn't like it seems on tv where they go on elaboate trips, cry rarely and all the babies are healthy. Alot of the time when having multiples there is a baby or two that have extended medical conditions if not permanent. A trip for us at this point in time is a huge issue. We have to evaluate everything. (Are there going to be alot of people there? People naturally want to get close up and see the babies and if they get sick they will probably end up in the hospital. Will the place we travel to have a plug in for Olivia's oxygen saturation monitor? The battery life is only 4 hours max. How much oxygen do we take? Diaper bags filled for three, two or more of everything. How many outfits in case she refluxes more than once? Where are we going to be at their feed time? etc. etc.) Our daughter Olivia has alot of conditions to look after. The list includes; Major acidic reflux, Sandifers syndrome, torticollis, flat skull, bronchopulmonary dysplasia. She has had surgery for PDA ligation, broviac install + removal, premature retinopathy. The only way to get her off of oxygen right now is groth and development which is hard with reflux. It is also hard when doctors false diagnose. She had to be seen in the University PICU (same system as Regional) two times for reflux apnea. I told the doctors exactly what it was, but they didn't believe that reflux apnea was even real. They called a Neurologist who diagnosed her with seizures even though the only symptoms she had were ones alot of preemies have, torticollis and occasional eye crossing. He put her on phenobarb which destroyed her appetite. We got to the point where we were feeding her every two hours and she was barely finishing 12 ounces a day. Finally I trusted my instinct again and went to a different neurologist who agreed it doesn't sound anything like seizures but more likely sandifers and took her off the phenobarb. Thank god her appetite is back, but we have alot of catch up weight gain in store. She only gained one pound the 6 weeks on phenobarb. On a lighter note, since then we have seen alot of progress. She still has reflux pretty bad but she can go without her nasal canula oxygen when she is awake the majority of the time, but needs it when she is eating and sleeping. The lower oxygen makes trips more possible so lately we have been going for walks. In fact last week was our first walk where none of the babies cried :) We still have to play catch-up on the preemie thing as well for all of them. Its harder for some preemie babies to do tasks that are natural for other babies. We are at 7 months old now and they have only rolled from tummy to back, Olivia only once on an incline. They are all three teething but dont know how to bring chew toys to their mouth. In fact when you put a teething toy in their mouth they dont chew it, they cry. For three months now it has been a constant battle of orajel, massaging their gums with a binky and tylenol. Although they exceed in other catagories. All three of them say, "Hi!" at proper times. Olivia can wave and has been since december. Caden can stand on his own if he has a toy to brace himself on. Logan can hold his bottle alot of the time. Physically i've always challenged myself so the physical battle of housework and the kids isn't stressful at all. The crying seems to be the only thing stressful so far (medical conditions aside). You cannot make Olivia eat faster so if the boys decide they want to cry while you are feeding her there isn't much you can do and vise versa. Alot of the crying is from teething, some I believe to be growing pains since the boys are growing so fast and some is due to being tired since they are on such a schedule they know when bedtime is and cry the hour before. We call this "Sour Hour". Even though we go through all this, a single smile from one of them can make all your worries vanish. I have to go because one of them is awake. I think this almost catches our story up. Thanks for your time :)