Casey has been pretty busy this month (and still has a lot coming up).
She saw her dentist on the 2nd. That was kind of a frustrating day. We went to him because he is one of the only pediatric dentists in town that treats severely disabled kids. This was our second time to see him. His office is really nice, but out off Bee Caves. A VERY long drive. Even longer when Casey just does not want to be in the car.
Last time we saw him he was a little concerned about her teeth not all coming in yet. He wanted us to come back after Casey had had 6-9 months to grow a bit more. Many of Casey’s teeth are still not breaking through. When he saw this, and took a look at her high/narrow pallet he was overwhelmed to the least. He told us he has never seen anyone like Casey and had no idea how to even begin treating her. He gave us a couple options.
1- We could drive to Houston and have her seen at Texas Children’s hospital. He told us the head dentist there has seen it all and would know what to do. 2- We could take Casey to the Dental school in San Antonio. He said they may have more experience with her specific needs, but he did not have a person directly in mind. 3- We could get Casey into the Cleft Clinic here at Dell Children’s. Casey does not have a cleft pallet, but if anyone in town is going to know how to approach her unique pallet concerns it would be this group.
The options were pretty simple for us. We will start here with the Cleft Clinic. The clinic takes a team approach. They will have a dentist, orthodontist and a plastic surgeon all come in and examine Casey. Then they will work together to figure out what will be best for Casey’s teeth and mouth moving forward. We will be seeing this group in March. The drive is much better for us. We go over to Dell multiple times a week already so I know we can handle this. I am kind of excited to see what they can suggest for us. If they are not able to help then we will look into taking Casey to Texas Children’s. That drive is just so hard on her.
Casey had GI the week after her dentist. She had lost a little more weight since her last visit. It is hard to say if she had lost since we put in the G instead of GJ though. We did not get a good before and after number. We have to take her in each week now until she starts gaining again. In addition we are trying to push her a little to eat more each day. That is much easier said than done.
On the 11th we met Casey’s new pediatrician. She was really good. Dr. Legett recommended her to us. We liked our previous pediatrician. We just felt that a lot of times he was not comfortable with Casey’s respiratory issues. Even on her best days he was a bit on edge. Dr. Bell is new to private practice. She did her residency at Dell Children’s. She has been exposed to some of the more severe cases. Casey was actually having a really hard time while we were there and Dr. Bell did not flinch at all. I think it was time for us to make that move.
We had a new nurse come in to meet us on Friday. She was really sweet. She works full time as a NICU nurse in Temple. She just wants to pick up an extra shift a week. That worked out perfect for us. She will be here on Friday’s, then we have Casey’s other 2 nurses to work the rest of the week. It is nice to have 3 nurses all trained on Casey’s care. That way anytime one is out we have a better chance of getting that shift covered.
Yesterday Casey went to meet a new eye doctor. Instead of taking her to an optomitrist we took her to a low vision specialist. This is the same type of doctor she saw in LA. That appointment went very well. Casey worked really hard to try and see the different images the doctor showed her. She seemed very attentive to the doctor as well. I think she really liked Dr. Miller’s voice. We told them how hard it is to get Casey to wear her glasses. She lays on them and they dig into her face. They have a brand that is a soft plastic frame. It fits like a head band around the head instead of behind her ears. They are going to put some tinted frames in them to help block light a little too. They are really cute; pink of course. I expect to get them later this month or early next.
Next week Casey has an ENT appointment. Her ears have not been draining at all like they used to. I am not sure if this is good or bad. I guess we will know soon.
We are working on getting the master bathroom redone. We are killing ourselves trying to bathe Casey in our current tub. We are going to pull it out as well as the shower next to it. In their place we are going to have a much larger, accessible shower installed. Once we have that we can wheel Casey in and out much easier. Who knows, maybe she will actually grow to like bath time.
As always we hope everyone is well. We will post more soon.