Today, Kendall turned one, even though it seems as if she has been with us for so much longer than 365 days.

We didn’t really have a plan for today, as it has been a rough accepting what she has gone through so far in her short life. Our intentions were to have a small little celebration for her with some cake and a few presents, but she hasn’t fully migrated to food yet and she still has a tough time with anything solid. Her gag reflex is so strong and anything on her tongue may trigger a vomiting episode. So, we picked up a little piece of cake and figured we would let her give it a try by gumming a few bites and let her enjoy the moment. There’s really not much she can eat with no teeth.

Well, at least that was the plan…

Her day was overshadowed by yet another trip to the hospital. Carsen has been running a fever all week, ranging from 101-103.5. A few trips to the doctor and another few to the hospital to run tests ended up with us taking him to the hospital again today for a kidney ultrasound. A urinalysis taken earlier in the week showed a staff infection and our doctor recommended that we get him in ASAP to get this ultrasound completed to determine why this was happening.

Back in April, when Kendall was diagnosed with WHS, our doctor ordered a kidney ultrasound due to the typical kidney issues that most kids have with this syndrome. It’s been so busy, we hadn’t yet gotten around to bringing her in for this ultrasound and I decided that since we were at the hospital doing this same exact thing for Carsen, we might as well get hers done at the same time. It worked out well, because we were able to do them back to back. While Carsen was sent up to get an additional test, I stayed with Kendall for her kidney ultrasound and the initial results were somewhat shocking. The tech that conducted the ultrasound had some difficulty finding her right kidney. After reviewing her complete abdomen, he found it in her pelvic area. The left kidney was in the correct spot, but the tech was concerned about his findings and escalated the pictures to the radiologist. After waiting a while, he released us and told us to get the results from our doctor. Cathy and I are obviously concerned about this and have no idea what this could mean for Kendall. We figured that there may be some additional issues given her syndrome, but had no idea that one of her vital organs was misplaced.

On the upside, we expected her weight to be in the 16 pound range at 1 year and she is closer to 18 pounds. We have been less concerned about her food intake these days and have become more focused on her development. She has been showing signs of improvement by rolling over from her front to back and reaching for items within her sight. She still has so far to go and with the help of her 4 hours/week of therapy, we hope that she will start showing quicker gains.

Kendall has also adopted well to her new headgear. Her ‘hat’ as I call it, will give her head a more round shape over the next few months. Her tendency to favor her left side has given her a flat spot on the back left side of her head, pushing forward her ear and jaw. Her hat will correct the shape and hopefully she will be out of it by the end of the year. The picture below is her taking a nap today on our way to get her hat adjusted, which we need to do once every 2 weeks. Cathy did the wonderful decorating job.

One Response to 1 Year Old Today

  1. cassia says:

    My son Lucas does the same thing with his lower lips (like the picture). I was thinking if they have a smal jaw. The eating problem can be related to that and a smal jay can be fixed. It seams to be a simple procedure and it can help with food intake, future headaches and problems with their tees. As a mom and a PT, I look so much on his mouth and for some reason, i don’t think that they don’t eat because they don’t know. If their mouth or jaw are smal, their muscle will be weak, tigth and probably painful. I don’t know I have a lot of questins and there are no answers. You take care and keep the good work. Sorry my English.
    Cassia

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