Brian’s been gone on a boys 4 wheeling trip for four days. He was due back today, but he called me when he got off the Rincon Train (near Tahoe) and said that is truck was now only going into 1st gear, and he hadn’t figured yet out how he’s going to get home.
Well, here are the updates on our lovely Miss Kaitlyn –
Between Kaitlyn and me, we had 10 doctor visits this week – yes 10!!!
It’s been such a crazy week that I can’t even think back to when I last wrote. Hmm where should I start?:
- Kaitlyn has had just one episode of the “coffee ground vomit” (blood in the vomit), yesterday. She went almost a week without doing it at all.
- She’s still vomiting, some feeds more than others, but at least on occasion I can go a feed without vomit.
- She’s gaining weight - her last weight check she was 14 ½ pounds.
- Eye follow up appointment – Her ROP seems to be completely resolved. She will likely have some peripheral vision loss as a result to the laser surgery that fixed the ROP disease, but it is likely to be minimal. Her eyes aren’t crossing any longer – they seem to have corrected all on their own. And she is near-sighted, but at this point, only -1.5%. The eye doc said that we’ll have to wait until she’s 18 months old (corrected), until we have a better idea as to what her vision will be and whether she’ll need glasses.
- Kaitlyn had her 2nd lung hypoxic challenge – which means she was put in a little tent in a reduced oxygen environment to see how she her she saturated. The last time she had this test she “failed” it, We don’t have the official results from the doctor yet, but she seemed to do a lot better. This means a few things if she indeed “passed.” It means that Kaitlyn can go on a plane or to high altitude. She wasn’t allowed to up to this point. She is going to have a 2nd lung test in the next month or so which will test her actual lung health.
- Kaitlyn had to have a meeting at her Regional Center office with the head doctor. In addition to a “home teacher” that she’ll be getting, we also talked about seeing a Speech Therapist that can hopefully help with her eating.
- I addition to all of the above appointments, I had a dentist appointment, a Physical Therapist appointment for my jaw, and a physical with a new primary care physician. I met with some new clients, showed quite a few houses, held an open house today, and OF COURSE, took care of Kaitlyn along while Brian was away (with a bit of help from her nurse Lucy who came 2 days).
- Kaitlyn is rolling over both directions – from her stomach. She used to only roll to the left, now she can roll both ways. We’ve seen her roll a few times from her back to her stomach, but usually with a little bit of help.
- She is teething! But I have to tell you, with all the horror stories I’ve heard from other mom’s and their babies teething, Kaitlyn is one tough cookie. One of her bottom teeth is poking through a tiny bit (I can feel it when she bites on my finger, it’s quite sharp), but she just rolls her tongue over it, and continues to try to put everything into her mouth. She seems to have taken great linking to biting her feeding tube – so I have to watch her like a hawk. No fever, maybe a little bit more fussy, but basically same Miss Kaitlyn.
- Eating. Well that’s not going very well at all. I try every day to feed her solids (or rice cereal) via spoon, and she has gotten very good at clamping down her lips, turning away and making it generally very clear that she wants nothing to do with food. When I give her a spoon, she’ll put that it her mouth, but not before she takes her other hand and basically wipes away all of the food first. I also try to use the soft-feeder on occasion (the soft-feeder is a cup feeder where I try to get her to “drink”, I can get a bit into her mouth, which she’ll swallow, but much more goes down her chin.
- My mom, Grandma “Nana” came for a visit. It’s been a few months since she’s seen her granddaughter – I warned her that she wasn’t going to ever want to leave that Kaitlyn has grown so much. Nana indeed didn’t want to leave and couldn’t get enough of holding her. She was so cute, she went stroller walking with Miss Kaitlyn and was obviously very proud to show her off to anyone she saw.
- While my mom was here we went to a Family Barbeque at the George Mark center. Again, the George Mark center is the incredible respite and hospice home for children where Kaitlyn is going to stay when we go on vacation next week. It was really nice to meet some other families while we were there. We met in the chapel for a parent’s session, and it was very powerful – some of their children passed away at the home - it was very emotional.
Well, I think that's about it.
Pictures coming in a seperate post...