Praying for Pounds!!!

Since my last blog update in January, E Bug has seen the urologist, pediatric opthomologist, pediatric endocrinologist, neurosurgeon, her regular pediatrician and the spina bifida clinic. As for the urology appointment, everything with her kidneys is working great!!! Her kidneys are functioning equally, there's no evidence of past UTI's, there's no scarring and there's no urine back up from the bladder into the kidneys. Hooray! As for her eyes, the cross-eyedness/nearsightedness she had four months ago is gone and she doesn't have to go back for six months. Hooray! As for the endocrinologist, the breast tissue E was developing is gone, and he thinks it was just persistent hormones cruising around her body leftover from birth. This shouldn't cause her any problems, and she doesn't have to see him again. Hooray!

As for the neurosurgeon, the MRI showed that E's shunt is functioning properly and that the fluids in her brain look great. Hooray! His only concern is that the soft spot on her head hasn't closed yet. Typically soft spots close by this age, but he's not worried about it and just wants to keep an eye on it as he believes it will close on its own in the next few years. She goes back for another MRI and check up in six months.


As for the pediatrician and the spina bifida clinic, E is still having some eating and weight gaining issues. Boo! She's still not eating solid foods so she's not getting enough calories to help her gain weight. She basically did not gain any weight between November and January, so we worked with speech therapists to help get over her gag reflex. However, we've had our ups and downs with them. (The last therapist was evil, so we had to get rid of her!) Our new therapist is awesome and has come up with some very creative ideas. Plus, I love her positive attitude! We were making great strides, and E had gained a pound between January and April until she got constipated. Right when we were getting the constipation under control, she became deathly ill with a stomach virus. When she doesn't feel well, she doesn't eat, and the downward cycle begins. She lost the pound that we worked so hard to gain, and now she's back down to what she weighed in November - not good!!!! The pediatrician is on top of things and ordered a blood work up of E's metabolic status to determine how aggressive we need to be with her feeding. We got new medicine to help with the constipation, are putting heavy cream in her milk and adding olive oil to her food, got her on some high calorie "super milk" and are giving her vitamin supplements - all to help her gain some pounds! The good news is that metabolically speaking, she's fine. The doctors are just concerned we haven't seen any growth in six months. So please keep your fingers crossed that she gains some weight - quickly!!! E has an appointment with Our Children's House who specialize in feeding July 1. We need to have made some serious progress by then or they may suggest a feeding tube. Yikes!

As for good news, for the first time since her diagnosis, I actually wasn't nervous about the outcomes of these appointments because she is doing so amazingly well (other than the weight issues). The neurosurgeon explained it best when he said, "At some point, you realize they're normal kids." I think I'm finally to the point where E is like a normal kid! As for "normal" activities, E is really acting like such a big girl. She has tons of curly hair and got her first haircut in February, she wears big girl nightgowns, went to the American Girl Doll Cafe, loves jewelry, has attended two big girl birthday parties (and got her nails painted for the first time!), loves to ride the jet ski, can stack three blocks, can sit unassisted, can say several words and is REALLY starting to express herself (especially her displeasure!) and loves to play! I know her shunt is working because she's really starting to figure stuff out: when Jeff closes his closet door and turns off the light, she knows he's leaving for work and waves good-bye to him; when she's done her bath, she reaches for the shower curtain to close it and when she plays with my jewelry, she knows where to put it on her body. It's such a relief to see her brain working!!!!!!!!!!!!!!!!!!!!!!!! What a fantastic Mother's Day Present that is!

All in all, we are so grateful for how well she continues to progress! We just need to keep the constipation and cooties away, start eating some higher calorie foods and gain some serious weight! Please keep her in your prayers, specifically that she starts eating solid foods, gains some weight soon and that her soft spot closes.