Today was another fun filled day of one doctor’s appointment after another. These days are exhausting but always productive.
Our first stop was at the pediatrician for Averi’s 9 month check up. These visits mostly consist of me updating him on everything all of her other doctors are doing so that at least someone has all of her information in one place. I’m sure that by now his office is pretty tired of filing write-ups in Averi’s folder. :)
He brought up one doctor’s concern about her being overweight and said that he thought she looked good, especially since most babies with DS are skinny. Ummm…ok. I told him that appointment was 2 months ago and that I think she looks much healthier now (you know, now that I’ve taken her feeding amounts into my own hands…whahaha).
I also showed him the PT evaluation and expressed my concern for her to receive Physical Therapy. He said that I could sign up for Help Me Grow and when I explained that we were already getting it and still not receiving PT he said he could write a referral to the hospital. FINALLY! Hopefully we will hear from them soon.
He also did a quick observation of her skills and put her at about the same developmental stage as a 4-5 month old. Apparently the geneticist knew what she was talking about when she said that individuals with DS usually take twice as long to develop skills. It’s one thing to hear it and a completely different thing to actually see it happening to your own child. I sometimes find myself being happy that I don’t have any close friends with babies the same age as Averi so that I can stay oblivious to what she could be doing. Besides, it’s not like she isn’t working on enough things right now anyways, right?
We then drove to the hospital to visit the ENT so he could follow-up on her laryngeal cleft repair. We waited forever, talked to a resident while he examined her, got her to sleep, and woke her up so the ENT could ask the same questions and do the same exam. He said everything looked great and that the swallow study cleared her to start eating. Really, are you sure?
I asked him if the surgery would affect her voice, since it was on part of her voice box, and he said that he heard a little rattle when she cried but nothing when she babbled so it shouldn’t really affect her voice.
I also asked him when we should follow up with Audiology and he sent us right over. They tested her ears for fluid and both were clear. Then they tested for response to sound and everything was the same, the left ear is still normal and the right ear still has significant loss. Finally, the audiologist sat me in a sound booth with Averi on my lap while she flashed toys if Averi looked toward a sound. That lasted all of 5 seconds before Averi decided that she had had enough of this long day and started crying.
Finally we went back to the ENT so he could tell us we could go. It’s a good thing he’s a really good doctor or I would be way more annoyed.
The last appointment was with the nutritionist at the Neonatal Clinic. They always weigh Averi to make sure that she is getting enough calories and growing nicely. Well, she weighed in at 15 lbs, a loss of about 6 ounces since last month.
Was I concerned? No. Did the nurse freak out? Yes. She left, I got Averi dressed, put her to sleep, and then the nurse returned and told me to get her undressed so she could weigh her again. Seriously? Guess what, she weighed the same 15 lbs.
When the nutritionist came in she told me that obviously a weight loss wasn’t ideal but that she was still a good weight so she wasn’t too concerned. Then she contradicted herself and told me to raise her feeds. I simply smiled and nodded my head while knowing that I was not going to do a single thing different with her feeds.
I asked her about Averi’s constipation (I know you all want to hear about this) and she said to stop giving her the vitamins with iron, feed her oatmeal and not rice cereal, continue giving her prunes, and possibly add some water to her feeds.
Finally, I asked her if it is okay that I have been slowly increasing her feed rate so that we can eventually do like 20 minute bolus feeds (just pour it in slowly instead of hooking up the pump for a longer period). She said that sounded good, since boluses are a goal. See, I can make wise decisions about her feeds without even being told. It’s almost like I know what I’m doing.
Thank goodness this day is finally over!