Belated Easter Update

Taylor said "mama" tonight. She was in her highchair and I was cleaning up her dinner and I walked back to her chair - she looked right at me and said "mama". This was music to my ears. You may remember that mama was her first word and shortly after her seizure, she lost almost all of her words. She has a very consistent "dada", but this was the first time I heard a clear "mama" in almost a year. It's hard to describe how much my heart melted. I know she loves me by the way she looks at me, smiles, cuddles, and lights up for me. But it is so nice to hear my sweet little gal say "mama". I will treasure that forever. I hope to hear it much more.

It's a fitting ending for our last several days. Lauren was on spring break last week so we went to Whidbey Island on Thursday and just relaxed. It is nice because we have to slow down there - no therapy, no running around, no household chores - just playing, being outside and relaxing together. The kids had a great time and David and I really needed the break. We've had a tough few weeks and needed a moment to recharge.

We went through a lull where it's hard to say exactly why the past few weeks were tough. We had a round of doctor appoitments - as we do every few months - this time hitting her pediatrician, neurologist, and endocrinologist. This involves appointments at Children's and while not as stressful as it used to be, it still hits you on the head that you are visiting specialists no parent ever wants to see. Her pediatrician appointment was uneventful and quick - he was quite late and rushed - and annoying - but quickly confirmed what I was worried about - she has fallen off the growth chart and he was concerned about her growth. She is still proportional - height/weight - just very small. He agreed we should go back to endocrinology to test for growth hormone or other hormonal deficiencies that might impact her growth. David was a trooper and took her to that appointment - which I hate because it involves giving lots of blood and in the past, this has been really hard for Taylor. As expected, we learned nothing except Taylor gave lots of blood - we're still awaiting the test results. We swore we'd always make sure to do the blood work before we saw the specilist so we could actually have a productive conversation, but they got us in on a cancelled appointment - otherwise we would have to wait until July! The specialist doctor shortage is the real deal. So, we're waiting to learn more, but they actually think her growth issues may be associated with her diet - or lack thereof. Particularly worrisome is a protein shortage. She truly hates turkey/chicken baby food, but we're going to have to get creative. While also tackling feeding therapy more aggressively. Ahhhh......on the plus side, the neurology appointment was positive - amazing from our old curmudgeon of a doctor. He was really pleased with Taylor's progress and said he thought she would be able to walk!!! - given her progress. This was so wonderful - no doctor ever tells us anything hopeful so to hear definitive guidance was such a gift. We needed a bright light so badly, and combined with my "mama", life is sweet.

We needed this reminder because Easter was kind of hard for us. Again, it's hard to say why. It followed this series of doctor appointments, and Jacob and Lauren had staggered spring breaks which created two weeks of schedule juggling. Also, Susan was coming to our house early for therapy sessions, so it was lots of therapy for all of us. The combination of this had me heading into Easter in a bit of a funk - but mostly, it really hit home that I want Taylor to be able to hunt Easter eggs like the other kids. She is 2.5 now and it is so hard to know what she is missing out on and what we so desperately want for her. Of course, with the big kids, we want to embrace all of the fun and festivities - but I have to mentally prepare myself to not be sad for Taylor - or at least try to. My old mantra "it's not helpful" to be sad or worried came in somewhat handy, but it was a bit of a long week. At church, we prayed for peace and I prayed extra hard - I felt like I needed an extra dose this year.

So, after a few tough weeks, this week-end was even more blissful and made Taylor's special "mama" gift even more special. Our life is truly good and we are blessed.