The kids and I have a few after-school routines and patterns in place that seem to work okay for us. We cherish the days and afternoons when we don't have medical visitors (therapists and/or nurse visits) and we can just be together with some down time.
Ethan and I were able to do a few fun things in the morning this past week. On Wednesdays, we have about an hour to kill between dropping the girls off at school and the beginning of story time; this week we played at the dream park that is across the street from the library. I don't know that Ethan has ever been to this park to play; he loved it :)
Ethan helped me harvest a few of our pumpkins. Believe it or not, we ended up with at least ten pumpkins this size! (This is Ethan's "silly face", something between a smile and a grimace, which he will give on command.)
After we dropped the girls off at school on Friday morning, I realized that the next couple of weeks have the potential to be busy and/or uncertain. I thought we should take advantage of the free time, so the boy and I headed to the zoo for the morning. I don't know what Ethan enjoyed most. Was it the animals? Running everywhere? Being in control of what we saw and for how long? The construction equipment? (Our zoo is building a large new exhibit.) No matter what it was, we had a nice time.
Kate, unfortunately, has caught her first Kindergarten cold. It's not anything too bad right now, just some sneezes, a runny/stuffy nose, and tiredness. However, none of us really want to deal with colds.
This weekend was the McFarland Family Festival. In years past, we participated in a few of the activities, including kids' shows, carnival rides, the food, and the parade. This year we all went to the Dave Landau show on Saturday morning (Anna enjoyed it the most of our 3 kids), and then Kate, Ethan, and I watched the parade on Sunday afternoon. Anna chose to take a nap on Sunday instead of going to the parade; Kate liked the candy; Ethan loved all of the vehicles. Kate wanted to do a few rides at the carnival, but, as we have told her many times, we just can't do everything.
Anna has a busy week coming up. Monday is school and a nursing visit sometime during the day. Tuesday she'll go to school for a couple of hours before Ethan and I pick her up to go to an appointment with the ophthalmologist. This one is just a check-in to see how that double vision is progressing among other things. Tuesday afternoon Anna has a double therapy visit (physical and occupational) at home. Wednesday and Thursday are the scheduled days for her fifth round of chemotherapy. During her time at the hospital, she will probably see the hospital teacher to keep up with schoolwork, have therapists visit/check-in, and interact with plenty of doctors and nurses. Friday she should be back home, recuperating after the chemo.
In addition to all that, I have a consultation meeting Monday morning with a therapy group about Anna receiving swallowing/feeding therapies. Way back in February, we learned that the specific location of Anna's tumor might interfere with her ability to swallow. Part of her speech therapy at the hospital every day was to practice swallowing anything she found appealing. In early March, Anna had a video swallow study done and was no longer allowed to receive thin liquids; she aspirated some water during swallowing, but her body had no physical reaction (like coughing) to the experience.
Anna did well with her daily practice until the radiation messed with her system. She started coughing up loads of phlegm, found virtually all foods unpalatable, and had no interest in eating. Then she had the shunt infection and she did not have the energy or desire to try food. Then she developed PRES and basically slept for a week. By the time Anna came home in May, her salivary glands and taste buds were still out of whack from the radiation, she was too weak to do much of anything, and she had no desire to eat.
Slowly, she began to enjoy tasting the foods we had at the table. We made a strong effort early on to find something, anything, that Anna would want to swallow ... without any luck. Matt and I made the conscious decision at that point to put our energies (and thus Anna's) elsewhere. There were so many things for Anna to work on over the summer ... strength, endurance, and healing in pretty much her entire central nervous system. Eating and swallowing took a back seat.
Sometime in July, Anna saw her speech therapist at the hospital and we decided that Anna might be ready for a follow-up video swallow study to see if her body could handle the coordination of swallowing thin liquids. The study was initially set up for the beginning of September, but ended up being switched to the end of August. Throughout July and August we tried to encourage Anna to swallow small tastes of something at each meal. She would tell us how many times she counted herself swallowing, but then would still have something in her mouth that she needed to spit out. It turns out that Anna was just "dry swallowing" the entire time. The video swallow study showed that Anna does not currently have the strength in her tongue to move food to the back of her mouth so it can go down her throat.
This kid needs help if she is every going to eat real food again. The home health agency does not have home speech therapy services; the school speech therapist cannot include swallowing goals in her work with Anna since they are medical in nature, not educational; the out-patient pediatric feeding clinic is about a half hour from our home and has a several month waiting list. So, we are trying to find another option. We have a few good leads, but all will take time to get set up, and it will take time and energy from sweet Anna.
It's frustrating because all along we have known that eating was something for Anna to work on, but neither Matt nor I have the experience or knowledge with helping someone learn to swallow again. Besides, we can only do so much. But now we realize that it is going to take a lot of work and a long time for Anna to be eating orally again.
However, we have learned by experience that God is with us every step of the way. I hesitate to say "there is a reason for this, too" because it doesn't change anything in the present. And yet, we know something will fall into place. Someone will be able to help Anna. And we will be able to look back on this part of Anna's rehab and realize that God had a hand in how things worked out. It's already happened too many time for us to be able to ignore His presence.
Time for Prayers
Thanksgiving
Please give thanks that the transitions to school have gone well for everyone in our family.
Please thank God for the wonderful educators who are working with our family this year.
Please give thanks for the continued support and encouragement our family is receiving.
Please thank God for beautiful fall weather, even if we can't be outside as much as we'd like to be.
Please give thanks for Kate's healthy immune system, so that mild colds can really be mild colds for her.
Please thank God for all of the medical professionals who are continuing to work with our family.
Requests
Please pray that this next round of chemotherapy goes as smoothly as possible for Anna.
Please pray for Ethan and Kate this week as their routines will be shifted somewhat with Anna's hospital stay.
Please continue to pray for everyone working with our family.
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for strength, peace, patience, and wisdom for our family members.
Please ask God to help us find appropriate and effective feeding/swallowing therapy for Anna.
Thank you, as always, for your prayers and support.
2 comments:
"standing on His promises..."
That photo of your children reading with the playset in the background could win some sort of photo award! How precious is that?
Post a Comment