Cant remember what I wrote last - we went to NY for the wedding. It was beautiful. I wish we could have enjoyed it more. Meg woke up sick the morning of the wedding. 30 days on the dot- I could set the calendar by it. Same thing again only this time Zithromax did not work which means she had to go back to the Rocefferin shots. Also teething and got one new tooth. Any weight she gained is gone. GI doctor weighed and measured her Monday and she was 19.3 lbs and holding at 30 and 1/4 inch. The monthly illness undoes any progress she makes. Physically and nuerologically. We switched her over to Neocate too - it is so gross. But she is digesting it it looks like. When we vent her it is no longer like a bubbling volcano of undigested Peptamen. Just a lot of stuck gas now - not so much liquid which means it is making it past the stomach. Feeding issues are a daily battle. I think she associates food with pain now. She cries in pain with her GI issues - so hard too. It is so sad. I would not want to eat either.
I have had a lot of sleepless nights in the past 2 weeks. We actually did an entire all nighter this past Monday. I cant believe how old I feel. I was literally sick on Tuesday from no sleep. The whole room was spinning and I was nauscious. Feeling really sad these past two weeks and crying a lot. I keep hoping for a good day - a normal day and they never come. Sometimes you hit the wall and I hit it hard this time. There really is not anyone to talk to except for Pat because no one else REALLY understands - even as hard as they try to. I feel cut off from the rest of the world and dont know how to get back to it. There is no time to figure it out either. Most of the time I feel like I have got it and I have what it takes, but on days like today I am lost. Have to stay strong though. James and Ryan need me too and besides- Pat is out of town on business - no one to pick up the slack tonight.James has to be at King High tonight to volunteer for an event and I have to take him and pick him up. Little things like this take planning around here!
Have to start the food battle with Meg now so we can keep feeding her orally. If for nothing else to keep her mouth muscles working so we dont end up having to suction her. If it were not for the gtube feeds she would be an air plant by now!!!