All Mixed Up

So that little cold, well it's taking longer to get over than expected. Poor Ellie started coughing with it last Saturday and was running low fevers in the evening (100). She sounded wheezy so I called our Peds office to get her in. He was out all week. Even though I hate explaining everything again, I asked for another doctor. None available. The best they could do was a Physician's Assitant (PA). She turned out to be great. Her nurse's son is one of Sydney's soccer coaches' mom and the PA was at the last birthday party Sydney attended...small world. Luckily she read up on Ellie's history and listened to her lungs. She said she heard something with every breath too and recommended an x-ray. I forewarned her that the last time we had an x-ray (in the ER at Stormont) they told me she had Pneumonia, didn't put her on antibiotics and she stopped wheezing the next day. She understood, but said it was worth a try and that she would tell them what they were looking at ahead of time.

So my wonderful hubby picked Sydney up from school and let her hang out a the office with him while Reagan, Ellie and I made our way to x-ray. First we went to the wrong place and had to load back up in the car and go to the right place. While we are waiting in the waiting room, which was empty, an older man who has just finished up says, " Let me tell you something," to me. And proceeds to tell the story of a baby abducted in Chicago not very far a way from his mom in a grocery store and that I need to keep an eye on my baby. I tell him I was and he says I need to take her with me everywhere and leaves. What was I doing? Looking at the fish tank with Reagan while Ellie sits not even 2 feet away from me in an EMPTY waiting room. And yes, I could see her. I just had to remind myself that he thought he was doing something good. So, then we go in for x-rays. The techs were wonderful. It all goes fast. We wait in the waiting room for them to get a hold of the PA. She calls back and talks to me on the receptionist's phone. So here's my favorite part: She tells me that she should have listened to me. Then the doctor who looked at Ellie's x-ray told her it was all mixed up in there and that she'd had extensive surgery on her chest. Yes, I was laughing as was the PA who had told the doctor she already knew all of this and had already told him prior to the x-ray. Anyhow she ended up prescribing Albuteral breathing treatments to open up the lungs. So now we have yet another machine. The pharmacy told me they usually try to put the tube in the patients mouth but that anywhere around the nose/mouth area was fine. So we eventually get home after picking up Sydney (who had an AWESOME time at dad's office) and tried the treatment. Wouldn't you know it, she loved the machine and immediately moved forward to put the tube in her mouth. The PA called back later and said the doctors found another x-ray to compare Ellie's current one to (must be from the ER when they told me she had pneumonia) and told me she looked clear. I'm still not sure how well they were really able to read it (Ellie's stomach is between her lungs so it is very confusing to look at an x-ray). She told us to stay with treatments anyway. I don't know how much it is really helping. We went in on Friday since she was still coughing pretty well and saw another doctor. He checked her oxygen level (96--100 is highest) and after checking her, felt that it was just the cold hitting her pretty hard and that it was just going to take her longer to recover. We see her regular surgeon tomorrow so we'll see what he says then.

Her eating has not suffered through all of this. In fact, we are moving right along to baby meat sticks, teething biscuits and other foods she can hold that will 'melt' in her mouth. She's not too sure about holding things herself but we are working on that. Guess the meat sticks are too cold and slimy for her. Speech Therapy also told us we can start forked up table foods. Last night was my first time feeding her forked up food off of my plate...okay so it was just mashed sweet potatoes (which she loves) but it was thicker and it was a start! Our goal is to get off that stinking tube this summer!!

Things I Am Grateful For...

1. The wonderful family, friends, and people that we do and do not know that have helped us out and who have prayed for Ellie. Our family feels so grateful to have all of you in our lives. There have been so many people who have helped us out in so many ways over the last 15 months and thank you does not even begin to cover it. Recently our church (SL United Methodist) and Grove Harvest Grange put on a music benefit in Ellie's name. It was a wonderful evening and so many talented people performed. David and I were sincerely touched by the event. Thank you to all those who coordinated, advertised, performed, attended and donated. We are so thankful to be a part of such wonderful communities. I have not gotten out my Thank You cards so I do hope that no one is offended that they have not received one. Do know that we appreciate every little thing and are so excited to pass on the kindness that has been shown to us.

2. That we have had a fairly healthy winter. Outside of the 1 in however many thousand event that happened to Ellie, we have not had the flu, stomach bug or anything else nasty around here. The worst has been runny noses and the cold everyone but Sydney has right now.

3. That the girls are doing well. Despite the crazy year, Sydney is finally learning to read (and doing a great job!) and Reagan is finally closer to being potty-trained. And amazingly, neither one is resentful or jealous of Ellie. All I hear is how much they love her.

4. Ellie has FINALLY gotten back to eating like she was before her December illness. I'm so impressed because she is eating 2 1/2 ounces of baby food or 1/4 cup of whatever I make on top of staying on her continuous feed. Meaning I'm not even making her hungry and she wants to eat...especially if it's one of her favorites: sweet potatoes or squash. No, she is not particularly fond of fruit. Last week she got to try a cinnamon graham cracker stick and she went to town. Our person who helps us with the feedings kept waiting for her to gag on a chunck so she could show me what to do. And of course Ellie never did. She also got to chew on a Slim Jim (but not eat it) and whenever we tried to rearrange it in her hand, she got really mad at us! That was awesome to see. She has favorites and she's letting us know. She's also using her nosey cup (cup with a part cut out for the nose so you don't have to tip back the head). Sometimes she will drink almost an ounce! Of course it is thick liquid and we have to go a little at a time. The only bad news on the eating horizon is that Children's Mercy can't get her in for an OPM study (the one where they watch her eat on x-ray and make sure none gets into the lungs) until June 11! This means we can't officially give her thinner liquids and chunckier food and it slows our progress. I was not happy and called to get her in earlier but it wasn't possible. Argh! I had hoped to talk with our doc about it yesterday, but just as I was almost to the hospital, I got a call that the appointment had to be rescheduled because he wasn't there. Apparently there had been a mix up with scheduling. Waste of a morning but at least they are supposed to reimburse us for mileage and toll.
5. Ellie is back to her physical self and then some. She has a little bit of balance for sitting (still not doing it on her own), she is rolling over a lot and she now puts her hands out in front of her and pushes up on them a bit when she is on her tummy! I think she's getting stronger everyday. I would love for her to do more, but I made her a promise in the hospital that if she made it home, she could have all the time in the world to learn to do these things.

Of course, there is so much more that I am grateful for, but Dave tells me I already make these posts to long. My resolution is to try and post more often.