Posted (Tina) in All Posts on January-14-2010

Ella has been having challenges during the night, especially going to sleep after her last feed of the day. And about 2 weeks ago, I mentioned to Josh that it sure seems like she is complaining more when we feed her. Well, she put up a good fight last night, not going to bed for a few hours after her normal scheduled time. The only thing that seemed to work was venting her and letting some of the food out of her belly.

Then, this morning she complained A LOT. I’m used to a bit of whining (she does not enjoy being fed), but it seemed like she was telling me more. I checked her belly and it seemed really distended and hard. I guess it just seemed like it was a repeat of the first week of August this past summer where we went to the ER and ended up being admitted for a similar issue. What did we discover? That Ella’s tummy is not emptying like it needs to. The medicine that helps with gastric emptying, Reglan, is a necessary medicine for her. Without it, her body does not function properly. Right now, she has been on Reglan. But I had this sense that it needed to be weight-adjusted.

Before calling the pediatrician, we weighed her. It seemed like she might have some fluid on board. The last time we weighed her in early December, she was 31.5 pounds. This morning, she weighed 33.4 lbs. Mind you, she had her clothes on, but still! That is a HUGE amount of weight gain for her. And it sure seems like it is coming on quickly. When she was given this dose of Reglan last summer, she weighed around 25.5-26 lbs. Sure enough, as soon as we increased the Reglan, she returned to normal. I’m so glad that we learned from our experience last time and it only took a simple call to the doctor.

We went to the ENT last week and the doctor agreed that more needs to be done to help Ella with her daily mucoids. The Nasonex and Prevacid have helped with the fluid in her ears and cleared out her nasal passages and sinuses. However, Ella still struggles with her secretions every day. The doctor mentioned that dryness makes it worse. So normally, she would tell me to increase her free fluid and give her lots of water. Apparently, the increase in fluids would help break down her secretions. But with Ella’s history of fluid issues, she does not want to make any changes.

Ella is due for all her checkups the first week of February. She has an echo scheduled, her pulmonary check-up and the pediatrician. Once we meet with all those doctors, we will go back the next week to see the ENT. We’re hoping that the echo shows that her stints are in good shape (we’ve seen some collateral veins intermittently). We’re hopeful that her pulmonary hypertension is in check. Ella seems like she has been requiring more oxygen. Back in Nov/Dec, we thought it might be nasal occlusion. But her recent trip to the ENT eliminated that theory. So we’re curious to get these check-ups and see if they have any thoughts on her increased O2 requirement. We’re anxious to see the pediatrician to discuss her rapid weight gain and the plan for food. Her doctor has wanted to switch her food to a more appropriate toddler formula, but we wanted to increase the density of the food to 30 k/cal first. Now that we’ve accomplished that milestone, we will be looking to switch foods and manage her weight gain.

What is that over there? Oh yeah, the Pack-n-Play! Ever since we set up a new play area on Dec 28th, Ella has not been back in her Pack-n-Play. It has been great for her to be out and have more room to explore. During a recent PT therapy session, Ella got on all fours and took a couple of steps crawling. The PT got tears in her eyes. Isn’t that sweet? She just knows that it is such a big milestone for Ella. Again, we’re still a ways off from Ella fully crawling or walking around, but she is still making progress.

Today is Aunt Shannon’s birthday. And tomorrow is cousin Richard’s birthday. We wish we could be there to celebrate!