Return to Routine

 Life is starting to resume to a normal routine here, which is such a wonderful blessing. The photo above is Ella's "cheeeeeese" face. Little Miss is so happy to have all of her family under one roof again and has spent the last week loving on each of us, especially her big brother. Ella really is such a blessing, she shares her gift of laughter, silliness, sassiness, and love with us all and it's such a delight to raise a child who enjoys life's simple pleasures as much as we do. 

 Our Nicholas feels more and more like his happy non-sick self every day. He has been taking longer breaks from his bi-pap during the day, but he is still working on getting back to baseline. Baseline for Nicholas means that he only wears his bi-pap at night for sleeping. We realize that because SMA is a degenerative neuromuscluar condition, being on bi-pap more frequently may be Nicholas's new normal, and that's perfectly okay with us. What ever we can do to help our child feel comfortable and relaxed is what we plan to keep doing for him. Nicholas also has more secretions than normal and we assume those will lessen as he continues to improve, but, again, we realize that this could be Nicholas's new normal. When Nicholas got bronchitis before his second birthday, that illness took away much of physical abilities: the ability to feed himself, the ability to sit unassisted for long periods of time, and most drastically the ability to swallow food and eat by mouth. Typically, most SMA children loose some strength when dealing with an acute illness so we know that Nicholas may never regain some of those things he lost while hospitalized with RSV. We do hold on to hope, though, that with some time, Nicholas will be back to baseline and not too much will have changed just yet. 

These beautiful brown eyes have captured our hearts forever.

Ella has enjoyed dressing herself every day this past week. In these photos she chose her brother's winter cupcake hat, a hand-me-down daisy shirt from her friend, Aubree, and her jean jeggings. 

Today when I got home from work she was wearing her rainbow striped pajama pants, a long sleeved white tee shirt, and a blue and white polka dot swim cap. I just looked at Jeff, and he said, "What? That's what she wanted to wear after her bath. At least she matches." No part of our daughter's outfit matched, so she gets her sense of style from her father, obviously.

I think she looks like a true artist, don't you? 

Since we sprung forward last week I have been planting like crazy. All this extra light in the evenings combined with warmer weather makes me eager to be outside. So Ella and I usually spend time in the afternoon in our backyard tending the flowerbeds and planting new flowers to bloom this spring and summer.

When Nicholas was at Doernbechers, the wonderful child life coordinator, Jan, brought him this wonderful Storytime Sticker Book that both Nicholas and Ella really enjoyed completing together with a little help from mommy.

The kids liked it so much that I ordered several more for them which will be delivered by the Easter Bunny on Easter Sunday. Shhh, don't tell...I cannot wait to see their excited faces!

That about sums up our week back at home. Even things like dishes and laundry don't bother me these days as being home just feels like such a blessing.