not what I was hoping for..............

Today started out bad because we woke up late..........Phil was to be leaving at 6am and I should have been showered and waking the kids for school. Instead, Phil woke up at 6am woke me up. I jumped in the shower and her comes Jack. Miraculously enough at 7:15 I was out the door to drop Katie off at school, Jack off to pre-school, stop back home to get Maddie a good breakfast and off to the pulmonologist.

It is almost 75 miles round trip to see this doctor so I wanted to make sure half way there she wouldn't start screaming for food. I was really hoping for good news today. The breathing treatments are the last part of Maddie's recovery. She still gets one treatment a day. We had an x-ray done Tuesday so the doctor could see if there was a change.

As the doctor talked my heart sank. In six months, there was no additional recovery to Maddie's diaphragm paralysis, in a month she has gained no weight and she could be on the breathing treatments for years. After I stopped sulking I started thinking like a responsible parent and asking questions. So yes all of these things are not good news but here is a little bit more information.

Her diaphragm could still recover over time...if it doesn't she could still have a pretty normal life the way it is. She would be better off if it recovered more. She could change her breathing treatments to an inhaler. It would be more convenient for us to change to an inhaler. I decided I would wait til she was older before we made that decision. There is also a slim chance we would take her off the treatments altogether to see if she could handle it. My thinking was maybe after cold and flu season.

Has not gained even an ounce. That was definitely not what I was looking for today but she has not lost any weight. In the last two weeks Maddie has gone to ALL table food and all drinks out of a sippy cup. No more bottles. She also is sleeping on a cot at daycare. State law requires all children a year and older to sleep on a cot. For those of you who have been around Maddie she doesn't walk ........SHE RUNS everywhere. She is afraid she will miss something when Jack and Katie are around and she hates not being in the same room with me. So she is eating just not enough to gain weight only enough to maintain her weight.

This is okay for now. In about two weeks I am hoping she will show signs of increased eating and slowly the weight will stick around. She eats well at daycare and most days pretty good at home. I just need to sit down and develop a high calorie diet for her she will like. I still meet with the nutritionist once a month and she and I will be speaking soon.

When the doctor said it might be years before she has another chest x-ray, I wanted to cry. It means my child is not getting completely well and may not ever get completely well. Yes she could still have a normal life but she is not completely well. I just felt defeated. I had so much hope going into this appointment today and I left totally deflated and angry. To see Maddie you would have not idea the journey we have walked, some days crawled and other days sat motionless. It is just so frustrating to hear she has no change.

The drive to the other children's hospital today, there is no direct highway route. We travel a two lane back road through the country. I actually love this drive and is usually pretty peaceful in the morning. On the way home, my mind was racing and I was angry. I had become so comfortable with seeing her and feeling like normal in a way I feel like I have let her down. So over the next few days I will create a new game plan and become very defensive about her again and the people she is around. It is the only way I can protect her and help her. I hate being knocked down we didn't deserve it.

Hoping for better days.....................TTFN