The little gains

We take for granted what it is that babies do as they develop through their first few years. Although Kendall is slow to arrive at those milestones that seemed so natural for Carsen to achieve, we find ourselves celebrating every little achievement. Growing from just a few cells to be able to do what we all do day in and day out is a miracle in and of itself. The human body is so complex and one tiny change in the genesis of life can alter every simple developmental goal, as we are finding out with Kendall. Although she is slow to reach these milestones, she continues to make progress. Just in the past few weeks, she has mastered grabbing her legs and turning over from front to back. She also grabs at items in front of her as she decides they are worth grabbing. She has also become more aware of her mouth and has taken to the bottle more consistently, but only as she is falling asleep.

The challenges are presented to us as a new mountain we need to climb every day. We hope that she can make strides more quickly over the next few months. Carsen is dying to play with her and it's tough for us to sit and watch him take her hand and try to get her to hold his trains or toys. He tries so hard to get her to interact with him. It's sad in some ways, but also very satisfying to see how much he loves her. She will always have a big brother that will look out for her...

On another note, today we met with the Kidney doctor and Kendall will need to go through a few more tests to determine the level of function in her kidneys and whether or not there is reflux occurring. One test will be very invasive and hopefully she will not remember it. The other should be fairly smooth. Our hope is that both kidneys are functioning well and that our only action will be to keep an eye out for any change of signs pointing to kidney problems. We are hopeful that everything will test out as normal as possible. We will know more over the next few months.

Kendall didn't take too kind to the cold water at the pool...

Carsen loves his little sister.

1 Year Old Today

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.