We have had a busy two weeks since the last post. As you can see from the picture, Grammy came to visit a couple of weekends ago. It was a great weekend and Josie and Grammy had a great time together. The weather was nice, so Chad and I got a chance to work outside on the yard. It was a nice change of scenery after being holed up in the house for so long.Josie started to come down with an upper respiratory infection a couple of weeks ago and we have been fighting ever since. As with every infection, it has really thrown her for a loop. She has lost 1/2 pound and still can't tolerate her high calorie formula. It's been two weeks now since we were on her regular diet and we aren't getting much closer to getting back on it. Josie's stomach can't seem to handle a cold and she isn't sleeping well because of a constant cough. We actually thought she was getting better last weekend and I even went out to lunch with friends for the first time since Christmas break. I told the girls at lunch this was the first time Josie had been sick without a trip to the hospital. It seems like every time Chad or I say something like this Josie takes a turn for the worse. I came home from lunch to a inconsolable little girl and we were at the Freeman ER by 6:00. Josie seemed to be having a lot of difficulty with her gtube and stomach. We had a lot of trouble getting her calmed down, which with Josie usually isn't an issue even when she feels pretty bad. Chad and I have experienced a lot with her and very little gets us nervous, but
Saturday afternoon we were both afraid something really bad was going on. The ER did a great job of getting us in without having to expose Josie to the waiting room and did an x-ray on her g-tube to make sure everything was working well. Josie calmed down while we were there and started to feel better. Her g-tube looked good and they said they would do whatever we felt comfortable with. We decided to take her home and give it another shot. She luckily did well through the night and we haven't experienced the same issue again. We had taken her off pedialyte Saturday morning and decided we must have pushed her a little too hard to get back on formula.Needless to say, Chad and I are once again exhausted. Josie has seen her pediatrician a couple of times through this illness and she diagnosed her with an ear infection and upper respiratory infection. We met Josie's new Ear, Nose, and Throat doctor on Monday and he decided to put Josie on an antibiotic since the ear infection wasn't clearing up. He noticed that the tube in the infected ear was coming out, so Josie will have to have the tube replaced when she gets better. We also saw the pediatrician on Monday and she was at a loss as to what do for Josie at this point. It's not a good feeling to have full confidence in your doctor
and realize that even they don't know what to do for Josie. Basically, since Josie can't tolerate her formula we have her on "life support" with the tube and feed her minimal amounts of formula to keep her hydrated. She isn't gaining any weight and with the lack of calories doesn't have a lot of energy. Unfortunately, with the addition of an antibiotic her stomach is only going to get worse. The good news in all of this is we are in the process of getting Josie into Mayo Clinic for a full evaluation. Her pediatrician is in agreement with us that she needs to have a fresh set of eyes really look at her history and the issues we are facing now to come up with some solutions. In the meantime, we are working slowly to build up to her high calorie formula and start gaining some weight. We should find out in the next couple of weeks when her appointment is.Through this all Josie has made some gains. She is now mimicking us when we smack our lips at her. She thinks it is funny if you do it back to her, too. She is also making progress on crawling. She can move her knees a couple of times before she lays down. Her physical therapist was optimistic this week to see her make progress even when she was sick.
The next post will probably be after Josie's birthday. It is hard to believe she turns 1 next weekend! We are really looking forward to celebrating and I can't wait to see Josie dig into her cake!
