Sorry For Skipping a Day

Alas, my days are often filled to overflowing with a long list of things I have to do. Some days, by the time I get to the end of the list, I have forgotten what was on the list in the first place. Yesterday's blog entry was one of those list items that I kept trying to find time for, and finally forgot about. Happily, there were no earth shattering bad reports to deliver or questionable test results to worry about. Katie had a fine day hanging out at home with Grandpa and Grandma Kelley. They are covering for Amy and I this week while we go to school for the first three days of the week. Thursday and Friday, Katie and I will be at Fletcher Allen for her next bone marrow extraction, lumbar puncture and chemotherapy.

Today was similar to yesterday for Katie. She stayed home with my parents and had kind of a lazy day. She didn't feel like doing much walking or swinging in the back yard, but she played quietly in the house, got a stroller tour of the neighborhood, got in a nap and worked a little with her physical therapist. I can't say the physical therapy is going all that well because Katie simply doesn't want to cooperate. She is still not interested in walking for the sake of walking and doesn't want to "play" with the therapist. However, on her own or with Amy and I, she will walk when its convenient, fun and safe. Her walking still bothers us, but it is getting better. She is more confident and more willing to take short walks (approximately 3ft) without prompting.

Both children and both parents for that matter are showing signs of being tired so the focus this evening is on an early bedtime for all. The kids are winding down with a movie right now, and as soon as I'm done writing, I will be reading them stories as they lie in bed and hopefully fall asleep quickly. Josh gets grumpy when he is tired and Katie just slows down and wants to stare off into space. A long night of sleep will do them good.

Quiet, Lazy Weekend of Fun

As it turns out, we never made it to the hardware store, but we did get to the LIBRARY--a favorite Kelley family destination. Katie was very happy to be out and about. She walked about the library on her tiptoes, sneaking up on Rick and on Susan Guilmette, who forgave Katie all her wiggles. We had to cut our visit to the library short, I'm sorry to say, because Katie was hungry. She has been eating like a pig, so we took her out to lunch at the Parsons Corner, where she ate and ate and ate. (She has an interesting relationship to potatoes. When Laurie asked her what she wanted, she ordered mashed potatoes and home fries. We had to lobby for some scrambled eggs and some ham, all of which she ate.) She woke up hungry after a long nap, during which I spread mulch, and she requested dinner. She is especially partial to Sara McKenny's noodles, and she ate more than I did. She is clearly making up for lost time.

We were very happy to see Joshua this morning. The Kings called about a play date, and off we went. Joshua was happy to share his play date with Katie--he is such a good kid--and Katie was so happy to see other kids. She watched for a while before she was ready to play herself, but she warmed up to the idea during a game of hide and seek during which she got to her feet and tottered about the Kings' house. She snacked her way through their house while Joshua played with Legos. She played happily with Sam and Olivia. She gave Jack a big kiss. it was so exciting, and so comforting, to hear her chirping away cheerfully with people she likes and sees so rarely. Katie's approach to the world has changed considerably. She pauses before leaping in. She is relearning how to make friends, though, and she is remembering how to play.

Suffice it to say, she was asleep five minutes later, and she continues to rest peacefully in a nest Rick built for her in the living room. Joshua is watching a movie in our room. Rick is grading student work. I did get to the blood drive in Glover, but that is the sum total of my productivity today. The house is quiet. We are all quiet. It is so very nice to have a quiet, lazy Sunday. I have missed these cozy days.

I hope that you have all had a quiet, peaceful day, too.

A Saturday Morning at Home

This morning is like many other Saturday mornings. We started out with a leisurely breakfast and then I started gathering recycling while Amy started doing chores around the house and Katie started watching a movie. Not terribly exciting, but pleasantly normal. So where is Josh? Well, his absence is pretty normal for a Saturday morning as well. He spent the night with Robin. He is always begging to spend Friday nights with her and we give in quite often.

The rest of the day is up in the air. Amy wants to get outside and do some planting. I want to get a little grading done and we both want to get Katie out and about. I think our first stop of the day will be the hardware store. What better place for a toddler to stretch her legs. :)

Further Good News

"Blog, woman. Blog," my husband scolds. He is putting Katie to bed, and I don't expect him to return any time soon. It's a lengthy process involving many stories, and they are just getting started.

I am fighting fatigue myself, but there is very good news to report: Miss Katherine Grace made a trip to the lab for blood tests today, and the results are amazing. She has platelets to spare (123,000!), her hemoglobin is fine (9.9), and her ANC has jumped from 190 to 726. She has not had a neutrophil count this high in a long time.

I called the kind folks at Fletcher Allen today to express our gratitude and to tell them just how well Katie is doing. There is no way to explain just how happy I am to be home with two healthy children. The version of Katie I came home to after work today shares very little in common with the Katie who occupied that hospital bed. The Katie who lives in this house doesn't need to watch television because she is so busy playing. And eating. And laughing. Katie was out back in the swing when we made it home from school, smiling and celebrating our return.

Josh was right about "the happy tears," by the way, and he deserves credit for having inspired them. Katie was laughing last night as she ran between her brother and her dad. "Come to me now, Katie," Josh would cheer, and Katie would lurch in his direction, giggling and reaching out for his hug. It was a tender moment. I was happy to see Katie enjoying herself and using the muscles she needs to develop. Her strength is returning. The real beauty of the moment for me, though, was the joy I saw in Joshua's face as he encouraged his sister to run and celebrated her efforts. Most of the time, I have ordinary children who fight about toys and boss each other around. These were not ordinary children. The love reflected in those two smiling faces was real, and it was powerful. I was so proud of them, so fully in love with them. Joshua can make Katie laugh like no one else can. He is such good medicine for her. I can be hard on Joshua--he is five, and he is relentless--but there is such good in him.

I am a very lucky woman. I don't need a thing for Mother's Day this year.

Home Improvement

Boy am I glad that this little girl is out of the hospital. She is so much more alive when she is home. Katie is animated, motivated and hungry. She spent the day yesterday, smiling, laughing, playing and loving everyone around her. She also spent a good portion of the day eating. She ate everything in site - never much of any one thing, but no food was safe within her sight. This morning has started out much the same. She asked for cereal for breakfast, but in the picture included with this post, she is eating my English muffin and turkey sandwich. She slept through the night peacefully in her own bed and didn't wake up this morning until after her mother and brother had already left for school.

Being home for her is the magic medication that is doing more to improve her mental and physical health than any of the drugs at the hospital. She is more active, more satisfied, and more willing to do the things she needs to do to regain some of the physical capabilities that she lost during her latest round of illness.

We will be going to North Country Hospital this morning to get the blood drawn for her first cell counts since leaving the hospital so that we can hopefully have counts back before the end of the day. Otherwise, if we wait till this afternoon for counts, we won't get the results back until Monday.

Her physical therapist will meet us at home this afternoon and we can begin to work on getting her to walk confidently again. Her muscle control is very shaky right now, and while holding a cup or some food, her arms shake uncontrollably and make it difficult for her to feed herself. Her legs are just as unreliable, but cause more problems for her when they fail. She is afraid of falling down, so she tries not to walk much at all and if she has to walk, she walks the shortest distance possible. The only way to describe her walk is to compare it to a the gait of a person with mild cerebral palsy. This new inability to walk is a direct result of her chemotherapy. The Vincristine that she gets generally causes this side-effect after a while and we have been told that Katie resisted the side-effect for a longer time than normally expected. With Therapy and time, this side-effect will eventually reverse itself, but for now we have to deal with it.

Amy has her own opinions about how beneficial it is for Katie to be home and I am encouraging her to add those at some point today. But just to give you a heads up, Josh said last night that he has caught her crying happy tears several times already while watching Katie interact with Josh and I.

A Good Morning

Katie is have a great morning at home and rather than describing how she looks and feels, I thought I would post a video so that you could see for yourself. Here she is, sitting on my lap in front of my computer, planning her lunch.