Overdue update

Well, I have a been a bad girl with the blog – yet again. I think because Taylor’s progress/situation is slower and less frantic than it used to be, I’m not doing a great job of keeping up with the blog. I always enjoy writing once I take a moment to catch up and always vow that I’ll do better. We’ll seeJ We have had quite a lot going on – we had a wonderful Easter – as you can see from Taylor’s picture she was a lovely gal on Easter Sunday. It was a quiet Easter out here because David’s parents were in Hawaii, so we had dinner with his sister and her family after many, many egg hunts. I have such fond memories of my Easter’s growing up that I love trying to recreate the magic for my own kids. Lauren started to ask a few tough questions this year – she was trying to sort out if the Easter bunny was a real bunny or someone wearing a costume. The bunny hides eggs inside in Seattle because it is cold and rainy outside. Lauren is always a little freaked out about the idea of a bunny in the house, but she was mostly excited. Jacob ate as much candy as possible and Taylor enjoyed watching the kids run around on their egg hunt.

The next week (last week-end) we left town on Wednesday for a long week-end in Palm Springs. It was simply dreamy. Very sunny and warm (around 85-90 degrees, but a very pleasant dry heat) and lots of time outside. The kids traveled great and everyone had fun. Taylor enjoyed the sun much more than ever before and she even had fun in the pool! We stayed at a condo complex with 8 pools and a few other families that are our friends. The kids had buddies to play with and David and I really enjoyed the break – and the sun. It was a very relaxed and laid-backed vacation – just what we needed.

Taylor was thankfully healthy – she’s finally kicked her ear infections and is all done with her medicine, so we’re hoping she can stay healthy for awhile. We do have an appointment with the ear/nose/throat specialist in a few weeks, and we hope that he wants do the ear tube surgery on Taylor soon. We really think she needs it and we’re ready to make it happen. We’re just so tired of her not feeling well – it’s sad to see the toll it takes on her and her therapy has definitely been compromised over the last several months because she has felt so poorly. We hope we can get the procedure done soon so she can enjoy the relief from her ears. Because Jacob has had the surgery twice, we are less intimidated than we would be otherwise.

Unfortunately, my vacation peace-of-mind was fairly short-lived. On Monday we had a crazy day – David had to go to Portland for work and Alison was sick, so I juggled the kids (and work). Taylor had a long therapy session with Susan, and she and I had a long discussion about Taylor’s progress. It was a long conversation and emotionally draining for me. All of us wish Taylor were making quicker progress (particularly with her protective reflexes) and Susan was recommending a seven-day-a-week regimen for awhile. We struggle with the balance of aggressive therapy for Taylor, while not wiping her out. The rest of our team (therapists at her school and all of our various specialty doctors) thinks we have a very aggressive approach and more is not necessarily better. So, for now, we’re going to stick with our program, add a bit more work at home, and hope a sustained healthy period for Taylor will help us break out of the plateau.

Also on Monday, I had my first tough experience with Taylor’s condition and its impact on the other kids. I was picking Lauren up from school and she and Jacob were playing on the playground and one of Lauren’s friends asked “why do Taylor’s eyes look funny?” I just said “oh, I think the sun is in her eyes.” But, it reminded me how much I don’t want Taylor’s condition to take a toll on Lauren and Jacob. I didn’t realized how much it affected me until the next morning – I had a meeting with Lauren’s teacher to discuss her reading progress and mentioned to her that some kids might start asking about Taylor and asked her to let me know if she sees Lauren sad, or thinks we need to discuss special needs with the class. I was so embarrassed, but I think the rough day or two hit me at the wrong time, and I started to cry during my parent-teacher meeting! I was surprised and didn’t pull it together as well as I wished I would have – Lauren’s teacher was a dear, but it’s a good example of how sometimes the weight of our situation will hit at the most random times.

I’ve been much better the rest of the week and it’s been great fun to see Taylor feeling better. Her therapy sessions are going better and we’re all feeling more optimistic. We have some dear friends struggling with a very tough situation and we’ve been spending time with them over the last week. In our effort to be good friends to them, we’re reminded of how much we have to be thankful for. Each of our kids is such a gift and we’re thankful for every day we have with them.