It has been a llllooooonnnnnnggggg day so I am going to try to keep this brief.
This morning we went to Children’s main campus for a followup with the feeding team. This is an interdisciplinary team composed of a dietitian, a gastro doc, a geneticist, an OT, a PT, a social worker and a nurse. Today we saw the nurse, the dietitian, the social worker and the geneticist. The dietitian was pleased to hear how well Ryan was doing with her feeding and her growth. She weighs 14 lbs 3 oz. She is still very low on the growth chart but is consistently growing and for her height, her weight is good. We didn’t get in trouble for starting cereal, in fact they were pleased and we are adding a second meal tomorrow. If she continues to do well with cereal we can add fruit (only the kinds that promote pooping) in a couple of weeks. The geneticist thought that Ryan was doing really well too. She evaluated her tone and was very excited that her growth was good. It was a very positive appointment. Ryan will be having another swallow test in a few weeks after she has more practice with cereal and then we go back to see the entire team in July and they will watch her eat. There is always the option to go back to feeding therapy to work with solids if she needs it.
BREAKING NEWS: Katie just saw Ryan get up on her hands and knees for a split second!! Now back to the blog!
This afternoon, we had a followup with our main geneticist at the Liberty campus. She is the one that originally saw Ryan soon after birth and didn’t think that we needed to get testing done because Ryan doesn’t have any typical dismorphic features that other chromo kids do. She is also the one to give us the final diagnosis after we did have the testing done. She was so impressed with Ryan that she said she was making “amazing progress”. This was very exciting for us but it wasn’t all good news. She reviewed the MRIs that Ryan has recently had. In the first MRI for her eyes, they noted that the corpus callosum was thin. In some areas on Ryan’s brain the thalamus was fused where she should have corpus callosum. There isn’t anything we can do about it and the result of this is developmental delay. So no biggie at this point. The other thing is her neck. We actually got to see the scans of the kyphosis in her cervical spine. It’s very obvious and her vertebrae is very close to her spinal cord. This could cause some serious problems for Ryan. The geneticist said that she was going to call the neurosurgeon to see if Ryan should be seen earlier than her scheduled date this summer. After the appointment we got the X-ray that the neurosurgeon requested so he would have more to look at before her appointment. We don’t know much about kyphosis but we do know that one treatment is surgery to fuse vertebrae together. We are pretty worried about it but at the same time, we just kind of want to bask in all of the good news about Ryan.
With everyone poking at her today, Ryan was still such a little sweetie. Other than a complete blowout poop that ended in throwing away an entire outfit that was covered in nastiness, today was a pretty good day!
5/3/12 I have to add this because I forgot yesterday. Ryan will be getting an EEG because of her weird head bob. This will monitor her brain activity and check for seizure activity. Another hurdle to jump over.