Clinics and Coasts

On Thursday Gib and I took Ellie in for a clinic appointment with the Short Bowel Clinic at CHB for the first time in a month and a half. It went well, Ellie is gaining weight again and has grown another half inch. Even with her pause in weight gain last month she is still in the 50% for weight and 70% for height. They were very pleased with her progress, but would like to see her continue gaining. They also recognize that with her current energy level she needs more calories. So we increased the concentration of her milk formula which increases the calorie content. She went from 20 calories per ounce to 25 calories per ounce. She is still on PN for 6 nights a week with one night off when she get just D5 mixed with half normal saline. But we didn't change anything with her PN just her milk.
It was a great visit because most of the doctors were away at a conference so we got to spend more time with the TPN guru and the nutritionist. They were very helpful and we got so many questions answered. The nutritionist gave us some great pointers as to what new foods we can try and how to make them ourselves so that we don't have to buy everything.Here is a picture just to remind you all whose daughter this is. Check out that hair. Gib got it wet after feeding her to clean off any food that found its way up there. Then on Friday we headed north to spend the weekend in Maine. We arrived on Friday and stayed until Tuesday morning. Last time we made the trek up there we decided that we needed to stay for more than one night to make the trip worth it, and four nights was great!

The weather was very hot for Thursday, Friday here in Mass, and we thought that it would be cooler in Maine. But it was just as hot if not worse. Ellie handles the heat well, but she did start to get a bit dehydrated from sweating so much. So we gave a call to Apria(our supply company) and they got a few bags of hydration fluids out to us. After a good hit of the new fluids she was good to go for the whole weekend. Hooking Ellie up for extra fluids is new territory for us, but it was something that we were told we may have to do. Especially in the hot summer months.The trip to Maine was a huge success, we all had a good time playing with the cousins, exploring the Maine coast and spending time with family and friends.It was Ellie's first time seeing the ocean, and first time at the beach. She even managed to eat a few pieces of sand just to keep things interesting.Ellie and Gus got to see their first parade and Ellie enjoyed her first gram cracker. Ok, so really all she did was gum it, but she seemed to like it. Gib's sister and mother even babysat for a few hours for us so that Gib and I could sneak out to get some new clothes and enjoy a quick meal out. Gib and I forgot how nice life was near the water, maybe on the next visit we can get Ellie out on the boat.