Much has happened in the last several months to people and families around me to cause sadness and heartache. Funerals, illness, broken relationships. The larger episodes of sadness that are included in news stories don't seem to affect me as much as the hurt and heartache that happens to those closer to me.
The funerals have been for those who have lived a long, full life and for those whose lives on earth should have included several more decades. The deaths have been both expected, often after long months (or years) of suffering, and unexpected, bringing a different degree of heartache.
Although all of these losses have included the Hope of heaven through Jesus Christ, those no longer with us on earth are missed terribly by the ones left behind. Spouses, children, grandchildren, and friends will have holes in their lives for months and years to come.
The illnesses have come in different forms, both physical and mental. My heart saddens when I learn of adult children who need more care than they did when they were young because of the nature of their mental illness.
It saddens me in a different way when I learn of a child who has a progressive neuro-muscular disorder. (Think of the implications of that diagnosis for a moment.)
Broken relationships perhaps hurt my heart the most, since the relationships in my life are what have sustained me during difficult times.
During the last several years, I have found much comfort and reassurance in the Psalms of the Bible. Not only do I sometimes feel like the authors of these verses take the words from my mouth, but I also feel like others are speaking directly to me.
Part of the beauty of the Bible is that these words written thousands of years ago hold eternal truths; the words and ideas are still relevant today.
One of my favorite Psalms is Psalm 27. I have shared it with several others in the past few months and years. I hope it brings comfort to others as it has to me.
Psalm 27
The Lord is my light and my salvation - whom shall I fear?
The Lord is the stronghold of my life - of whom shall I be afraid?
When evil men advance against me to devour my flesh,
When my enemies and my foes attack me, they will stumble and fall.
Though an army besiege me, my heart will not fear;
Though war break out against me, even then will I be confident.
One thing I ask of the Lord, this is what I seek:
That I may dwell in the house of the Lord all the days of my life,
To gaze upon the beauty of the Lord and to seek him in his temple.
For in the day of trouble he will keep me safe in his dwelling;
He will hide me in the shelter of his tabernacle and set me high upon a rock.
Then my head will be exalted above the enemies who surround me;
At his tabernacle will I sacrifice with shouts of joy; I will sing and make music to the Lord.
Hear my voice when I call, O Lord; be merciful to me and answer me.
My heart says of you, "Seek his face!" Your face, Lord, I will seek.
Do not hide your face from me, do not turn your servant away in anger; you have been my helper.
Do not reject me or forsake me, O God my Savior.
Though my father and mother forsake me, the Lord will receive me.
Teach me your way, O Lord; lead me in a straight path because of my oppressors.
Do not turn me over to the desire of my foes, for false witnesses rise up against me, breathing out violence.
I am still confident of this; I will see the goodness of the Lord in the land of the living.
Wait for the Lord; be strong and take heart and wait for the Lord.
Those last verses bear repeating.
I am still confident of this; I WILL see the goodness of the Lord in the land of the living.
Wait for the Lord; be strong and take heart and wait for the Lord.
Monday, July 30, 2018
Tuesday, July 24, 2018
Summer Camps - Week 2
Last week was our second in the string of camp weeks, with the Dane County Fair thrown into the mix as well. Anna continued her therapy program at CI while Kate participated in a morning camp on Monday, Tuesday, and Wednesday at the UW Arboretum called Fantastic Flyers. Ethan and I got to catch up on our time together those few mornings :)
As of last week, Anna has already met some of her summer goals. First, she walked more than 1,200 feet in 6 minutes using her crutches while carrying a loaded backpack. Actually, she hit higher than 1,200 feet on more than one day. Second, Anna walked more than 500 feet using her two single point canes while carrying her loaded backpack. Again, she did that on more than one day. Third, Anna's overall balance has improved noticeably, although we don't have specific numbers to back up this observation yet.
This hard working kid is still working towards the other goals, which include getting up from the ground without any handhold assistance, doing the whole backpack routine, and quickly/efficiently typing up summaries.
Sweet Anna is getting more and more fatigued as these weeks progress, but she's pushing through the hard parts to continue to make progress.
Kate's camp at the Arboretum was a good one. We think that this particular series of nature camps is a good fit for Kate. The leaders are very experienced and knowledgeable and Kate comes home teaching us what she has learned each day. This year she learned about insects, bats, and birds.
Ethan and I did some work at home on Monday, but were able to have a playdate on Tuesday morning. I think this is the first playdate of the summer that was targeted for Ethan. Sigh. I guess that's typical of the life of a third child. This boy has been one happy camper, though, having his sisters home to play with a lot of the time.
Wednesday Ethan and I both had appointments to get our eyes checked. No surprises here. At least Ethan has plenty of practice with the various eye tests from being brought along to many of Anna's appointments in the last year. (We tallied them up at dinner one evening; I think she saw Dr. Struck at least 12 times in the last 12 months. Yikes!)
Thursday afternoon we attended our first library program of the summer. Perhaps that says something about our summer thus far ... we usually attend more events than this.
The dog show was a hit again this year with the kids, and everyone was able to redeem prizes for the reading program as well as stock up on more library books.
Friday we had to drive across town in the afternoon to pick up Anna's new pair of glasses. We tried to make an event out of it by planning a picnic lunch at a park after therapy, but it rained from about noon on Thursday until Saturday morning. So we did our picnic under the awning at CI. It worked.
Saturday was planned as our family's afternoon at the fair. Actually, Kate and I made a trip on Wednesday evening to drop off her project. Somehow I had forgotten that when she dropped off her project, she actually had to talk with the judge. Oops. But Kate and I decided afterwards that it was probably better that she wasn't expecting that conversation; then she didn't have a chance to worry about it.
Kate did a great job answering the judge's questions and received some very nice compliments, as well as a blue ribbon and a merit award. Way to go, Kate! I think next year she may choose to show more items at the fair.
On Saturday, we met up with Kate's 4H buddy at the fair so the girls could ride the carnival rides together.
In fact, Ethan tagged along for a few of the first rides, and then Anna joined in a little later.
With Emily and Kate to help Anna on and off of the rides, Matt and I didn't have to ride any with her! Hooray for us :)
Kate's favorite ride was the Firestorm. She must have ridden it about 10 times.
We paused mid-afternoon for some lemonade and funnel cakes.
After watching the horses and looking at some projects, the girls managed to fit in a few more rides before Emily had to leave. We had some hot and tired kids at the end of that day.
I have a feeling that the fair is going to hold a different place in our lives in the coming years :)
Now we're already into the next week of camps. Summer is going way to fast!
As of last week, Anna has already met some of her summer goals. First, she walked more than 1,200 feet in 6 minutes using her crutches while carrying a loaded backpack. Actually, she hit higher than 1,200 feet on more than one day. Second, Anna walked more than 500 feet using her two single point canes while carrying her loaded backpack. Again, she did that on more than one day. Third, Anna's overall balance has improved noticeably, although we don't have specific numbers to back up this observation yet.
This hard working kid is still working towards the other goals, which include getting up from the ground without any handhold assistance, doing the whole backpack routine, and quickly/efficiently typing up summaries.
Sweet Anna is getting more and more fatigued as these weeks progress, but she's pushing through the hard parts to continue to make progress.
Kate's camp at the Arboretum was a good one. We think that this particular series of nature camps is a good fit for Kate. The leaders are very experienced and knowledgeable and Kate comes home teaching us what she has learned each day. This year she learned about insects, bats, and birds.
Ethan and I did some work at home on Monday, but were able to have a playdate on Tuesday morning. I think this is the first playdate of the summer that was targeted for Ethan. Sigh. I guess that's typical of the life of a third child. This boy has been one happy camper, though, having his sisters home to play with a lot of the time.
Wednesday Ethan and I both had appointments to get our eyes checked. No surprises here. At least Ethan has plenty of practice with the various eye tests from being brought along to many of Anna's appointments in the last year. (We tallied them up at dinner one evening; I think she saw Dr. Struck at least 12 times in the last 12 months. Yikes!)
Thursday afternoon we attended our first library program of the summer. Perhaps that says something about our summer thus far ... we usually attend more events than this.
The dog show was a hit again this year with the kids, and everyone was able to redeem prizes for the reading program as well as stock up on more library books.
Friday we had to drive across town in the afternoon to pick up Anna's new pair of glasses. We tried to make an event out of it by planning a picnic lunch at a park after therapy, but it rained from about noon on Thursday until Saturday morning. So we did our picnic under the awning at CI. It worked.
Saturday was planned as our family's afternoon at the fair. Actually, Kate and I made a trip on Wednesday evening to drop off her project. Somehow I had forgotten that when she dropped off her project, she actually had to talk with the judge. Oops. But Kate and I decided afterwards that it was probably better that she wasn't expecting that conversation; then she didn't have a chance to worry about it.
Kate did a great job answering the judge's questions and received some very nice compliments, as well as a blue ribbon and a merit award. Way to go, Kate! I think next year she may choose to show more items at the fair.
On Saturday, we met up with Kate's 4H buddy at the fair so the girls could ride the carnival rides together.
In fact, Ethan tagged along for a few of the first rides, and then Anna joined in a little later.
With Emily and Kate to help Anna on and off of the rides, Matt and I didn't have to ride any with her! Hooray for us :)
Kate's favorite ride was the Firestorm. She must have ridden it about 10 times.
We paused mid-afternoon for some lemonade and funnel cakes.
After watching the horses and looking at some projects, the girls managed to fit in a few more rides before Emily had to leave. We had some hot and tired kids at the end of that day.
I have a feeling that the fair is going to hold a different place in our lives in the coming years :)
Now we're already into the next week of camps. Summer is going way to fast!
Tuesday, July 17, 2018
Summer Camps - Week 1
Monday, July 9 began the month of summer camps in our home. Anna started her four week intensive therapy adventure at CI while Kate and Ethan have a handful of other camp-like activities during the month of July.
The upside to everyone having activities is that this mom gets "some" time at home without any kids around. This time comes in very handy for such chores as grocery shopping and cleaning. I still marvel at how clean things can get in the small amount of time that people are out of the house, and then how messy they can become within 15 minutes of people getting home.
The downside to everyone having activities is that this mom has a lot of driving to do. Oh, well.
Anna's summer camp update first. This is Anna's third summer participating in Advance. The first summer was good; her second summer was great. We all have high hopes for this summer.
Anna set a personal goal for herself last fall of wanting to be able to use her crutches as her main mobility device for school in 6th grade. Almost all of her goals this summer are to help her achieve that milestone. The main focus is getting Anna to walk around as much and for as long as possible while wearing her 10-12 lb. backpack. In addition, she is practicing taking it off, putting it on, pulling things out, and putting things in. All of these tasks are second nature to most 6th graders, but believe me, it is HARD work for Anna. The idea is to get these tasks as automatic as possible for her before school starts so that the transition isn't so hard.
In addition to mastering life with her crutches, she is also working more and more with two single point canes (a.k.a. her crutches without the cuffs). The idea behind this is that it will continue to challenge her strength and her balance so she can continue to make progress in regards to her eventual goal of walking independently.
So far so good. This kid has an incredible focus and determination. I just hope she hasn't set her hopes too high this time.
Kate's update next. Last week Kate participated in a week of day camp at Lake Waubesa Bible Camp. She had a great time and was very chatty about her days there. (Her chattiness after the fact usually means that she is her quiet and reserved self during the time at camp.) She enjoyed the time in and around the water, the experiences with nature, and the team building activities.
Ethan was also able to participate in the same week of day camp at Lake Waubesa Bible Camp. He also had a great time, but was stretched in terms of his endurance since this was his first activity that was all day every day for a whole week. (It was good practice for Kindergarten!). Ethan was much quieter and more reserved when he came home, which meant that he was his silly outgoing self while at camp. Seriously, this boy never ceases to amaze us. Neither Matt nor I were nearly as comfortable or confident in our skin at 5 years old as Ethan is right now. Experiences like this make us wonder what he will choose to do with his life.
Friday evening was the family night celebration at camp. We all came along, in spite of the heat.
Matt participated (and WON) the all-dads WaWa Ball tournament.
The evening wrapped up with a picnic dinner and a closing program. Then we headed home with some hot, tired, sweaty kids. Saturday morning was a little rough for some members of the family ...
Harvesting update. Since our return from out west, the kids and I have been working nonstop to harvest and preserve garden produce. The broccoli and peapods are all done; the beets and June raspberries are almost finished; and Kate and I pulled the onions today. We have started picking cherry tomatoes, but the main harvest is yet to come. The cucumbers, zucchini, and green beans are in full production mode, requiring plenty of time and energy for the four of us. The kids actually argue about who gets to use the cucumber slicer; I'm guessing it will be similar for when we start shredding zucchini. After Ethan voluntarily snapped beans with me for an hour on Monday morning (and earned his $1), the girls decided that they should snap beans in the afternoon (and earn their dollars).
Our last harvesting story relates to Reepicheep, the chicken ... er, rooster.
Upon our return from the trip to visit family, our suspicions about his gender were confirmed when he started waking us up early in the morning by crowing. Oops. These things happen. After weighing our various options and trying (albeit not too hard) to find him a new home, we decided to harvest him this last weekend.
Matt and I did our research and proceeded with the task as humanely as possible. It wasn't too bad, actually, especially once you remember that I taught my 7th graders how to dissect frogs and chicken wings years ago. We plan on having a chicken dinner one evening this week.
Our second week of summer camps is already in full swing, but I'll wait and update about that another time!
The upside to everyone having activities is that this mom gets "some" time at home without any kids around. This time comes in very handy for such chores as grocery shopping and cleaning. I still marvel at how clean things can get in the small amount of time that people are out of the house, and then how messy they can become within 15 minutes of people getting home.
The downside to everyone having activities is that this mom has a lot of driving to do. Oh, well.
Anna's summer camp update first. This is Anna's third summer participating in Advance. The first summer was good; her second summer was great. We all have high hopes for this summer.
Anna set a personal goal for herself last fall of wanting to be able to use her crutches as her main mobility device for school in 6th grade. Almost all of her goals this summer are to help her achieve that milestone. The main focus is getting Anna to walk around as much and for as long as possible while wearing her 10-12 lb. backpack. In addition, she is practicing taking it off, putting it on, pulling things out, and putting things in. All of these tasks are second nature to most 6th graders, but believe me, it is HARD work for Anna. The idea is to get these tasks as automatic as possible for her before school starts so that the transition isn't so hard.
In addition to mastering life with her crutches, she is also working more and more with two single point canes (a.k.a. her crutches without the cuffs). The idea behind this is that it will continue to challenge her strength and her balance so she can continue to make progress in regards to her eventual goal of walking independently.
So far so good. This kid has an incredible focus and determination. I just hope she hasn't set her hopes too high this time.
Kate's update next. Last week Kate participated in a week of day camp at Lake Waubesa Bible Camp. She had a great time and was very chatty about her days there. (Her chattiness after the fact usually means that she is her quiet and reserved self during the time at camp.) She enjoyed the time in and around the water, the experiences with nature, and the team building activities.
Ethan was also able to participate in the same week of day camp at Lake Waubesa Bible Camp. He also had a great time, but was stretched in terms of his endurance since this was his first activity that was all day every day for a whole week. (It was good practice for Kindergarten!). Ethan was much quieter and more reserved when he came home, which meant that he was his silly outgoing self while at camp. Seriously, this boy never ceases to amaze us. Neither Matt nor I were nearly as comfortable or confident in our skin at 5 years old as Ethan is right now. Experiences like this make us wonder what he will choose to do with his life.
Friday evening was the family night celebration at camp. We all came along, in spite of the heat.
Matt participated (and WON) the all-dads WaWa Ball tournament.
The evening wrapped up with a picnic dinner and a closing program. Then we headed home with some hot, tired, sweaty kids. Saturday morning was a little rough for some members of the family ...
Harvesting update. Since our return from out west, the kids and I have been working nonstop to harvest and preserve garden produce. The broccoli and peapods are all done; the beets and June raspberries are almost finished; and Kate and I pulled the onions today. We have started picking cherry tomatoes, but the main harvest is yet to come. The cucumbers, zucchini, and green beans are in full production mode, requiring plenty of time and energy for the four of us. The kids actually argue about who gets to use the cucumber slicer; I'm guessing it will be similar for when we start shredding zucchini. After Ethan voluntarily snapped beans with me for an hour on Monday morning (and earned his $1), the girls decided that they should snap beans in the afternoon (and earn their dollars).
Our last harvesting story relates to Reepicheep, the chicken ... er, rooster.
Upon our return from the trip to visit family, our suspicions about his gender were confirmed when he started waking us up early in the morning by crowing. Oops. These things happen. After weighing our various options and trying (albeit not too hard) to find him a new home, we decided to harvest him this last weekend.
Matt and I did our research and proceeded with the task as humanely as possible. It wasn't too bad, actually, especially once you remember that I taught my 7th graders how to dissect frogs and chicken wings years ago. We plan on having a chicken dinner one evening this week.
Our second week of summer camps is already in full swing, but I'll wait and update about that another time!
Wednesday, July 11, 2018
Medical Updates
It's been awhile since we've provided a comprehensive medical update about Anna. I've purposefully put off summarizing all of the various appointments in the last few months so I could gather everything and share it all at once. Here it goes!
Eyes - Anna had a check-up with the ophthalmologist in June. He was able to check her vision more accurately this time and she has a new prescription for her left eye. However, less than a year had passed since she got the new set of glasses, so we have to jump through some insurance hoops to get her the newest lenses. She should have the new pair (which look exactly the same) by the time school starts in September. Anna's double vision is still present, but we are pretty much out of options now for correcting that issue.
Teeth - Anna had four teeth pulled in May and the matching four on the other side of her mouth pulled in late June. She was a trooper and hardly complained about it at all. Of course, the shells remaining were pretty small, so there wasn't much pain.
Thyroid - Anna's thyroid levels were checked in February. They are stable, but will need to be checked every 6 months. Her daily thyroid medication has remained stable for a few years.
Growth - Anna had an endocrinologist appointment in mid-June. Her growth is much more typical of another girl her age, but her height percentile is still less than 10%. Her growth hormone therapy dosage was increased to adjust for her weight gain. (It's still tricky to respond when people comment about Anna's growth now. Now that she has grown, people notice. But what are we supposed to say? Usually, not much.)
AFOs - Anna's braces were adjusted back in May to account for her growth. This pair will probably last her another 6 months or so, at which point she'll be casted and fitted for a new set.
Hip/spine x-ray - Anna requires a couple of x-rays of her hips and spine prior to her intensive therapy program in the summer. They want to make sure they don't do anything that might cause more harm to a kid than good. The last two summers, these x-rays have been positive for osteopenia (precursor to osteoporosis). The osteopenia was caused by radiation, chemotherapy, and a few of the medications Anna was on in 2014.
The good news this time around was that there was no evidence of osteopenia! Hooray! The bad news this time was that they have detected enough of a curve in Anna's spine that she was referred to a pediatric orthopedic specialist for scoliosis. There's always something ...
Neuropsych evaluation results - For my own records, this was the year that required mucho communication about the "official" results. For everyone else's information, the results were pretty much consistent with those of 3 years ago, with some additional concern about Anna's executive functioning skills. Again this time around, the testing showed some ways in which Anna is a really intelligent person, but also how she is very, very different from other kids. Although these results are hard to digest, we appreciate having the documentation to help us advocate for Anna in educational settings.
Now it's on to the good stuff. Most of the above was just the nuts and bolts of what we have to keep track of.
Food update - Back in April, we began the process of weaning Anna off of tube feeds. At that point, she was getting 300 mL of formula each day that was a total of 450 calories, in addition to the homemade purees. Every few weeks, we'd cut back on the amount of formula she was given throughout the day. We would keep track of her oral intake and her weight, to make sure we had the data to support our own observations. Things were going very well and we were given the approval of the GI doctor at our June appointment to continue as planned.
As of June 27 (Anna's 11th birthday), Anna is no long receiving formula. She still receives three "meals" of our homemade purees and a bolus of water in the mornings, but that's it. We are hopeful that Anna can continue to make forward progress in this regard so that some day she can be completely off of g-tube feeds. (What an amazing goal to have reached and what an amazing goal to have!)
PT update - In May, Anna had an OT/PT evaluation in preparation for her intensive therapy program. Here are a few of her numbers.
For a balance test, she had previously scored 24 in 2016 and 28 in 2017. The maximum score for children over 6 is 54. In May, Anna scored 39!
Last August, Anna could walk 140 feet using her crutches during the 6 minute walk test. In May, she walked 855 feet with her crutches, while wearing her backpack. Whoa.
Last August, Anna could walk 10 meters using her walker at a speed of 1.16 m/s. With her crutches, she walked at a pace of 0.15 m/s. In May, she went 1.13 m/s with her crutches, 0.6 m/s with two single point canes, and 0.69 m/s independently. That's right, people, she's now being testing on how fast she can walk without using any assistive devices. She was certainly on a roll the day that she did her evaluation, but everyone is looking forward to seeing what this summer's Advance program has in store for her.
Anecdotally, Anna prefers to walk on her own in our house. She either cruises from object to object and wall to wall, or walks carefully on her own. More than once in the last week, Ethan has said, "Mom, Anna looks normal!" when Anna is standing in the middle of a room. (We then have a conversation about what normal means.) Given the choice, Anna more often asks to use her crutches when we're out and about. If she knows there is a lot of walking, then she'll ask for her walker.
This journey has been several years in the making, and will continue for the rest of dear Anna's life.
Eyes - Anna had a check-up with the ophthalmologist in June. He was able to check her vision more accurately this time and she has a new prescription for her left eye. However, less than a year had passed since she got the new set of glasses, so we have to jump through some insurance hoops to get her the newest lenses. She should have the new pair (which look exactly the same) by the time school starts in September. Anna's double vision is still present, but we are pretty much out of options now for correcting that issue.
Teeth - Anna had four teeth pulled in May and the matching four on the other side of her mouth pulled in late June. She was a trooper and hardly complained about it at all. Of course, the shells remaining were pretty small, so there wasn't much pain.
Thyroid - Anna's thyroid levels were checked in February. They are stable, but will need to be checked every 6 months. Her daily thyroid medication has remained stable for a few years.
Growth - Anna had an endocrinologist appointment in mid-June. Her growth is much more typical of another girl her age, but her height percentile is still less than 10%. Her growth hormone therapy dosage was increased to adjust for her weight gain. (It's still tricky to respond when people comment about Anna's growth now. Now that she has grown, people notice. But what are we supposed to say? Usually, not much.)
AFOs - Anna's braces were adjusted back in May to account for her growth. This pair will probably last her another 6 months or so, at which point she'll be casted and fitted for a new set.
Hip/spine x-ray - Anna requires a couple of x-rays of her hips and spine prior to her intensive therapy program in the summer. They want to make sure they don't do anything that might cause more harm to a kid than good. The last two summers, these x-rays have been positive for osteopenia (precursor to osteoporosis). The osteopenia was caused by radiation, chemotherapy, and a few of the medications Anna was on in 2014.
The good news this time around was that there was no evidence of osteopenia! Hooray! The bad news this time was that they have detected enough of a curve in Anna's spine that she was referred to a pediatric orthopedic specialist for scoliosis. There's always something ...
Neuropsych evaluation results - For my own records, this was the year that required mucho communication about the "official" results. For everyone else's information, the results were pretty much consistent with those of 3 years ago, with some additional concern about Anna's executive functioning skills. Again this time around, the testing showed some ways in which Anna is a really intelligent person, but also how she is very, very different from other kids. Although these results are hard to digest, we appreciate having the documentation to help us advocate for Anna in educational settings.
Now it's on to the good stuff. Most of the above was just the nuts and bolts of what we have to keep track of.
Food update - Back in April, we began the process of weaning Anna off of tube feeds. At that point, she was getting 300 mL of formula each day that was a total of 450 calories, in addition to the homemade purees. Every few weeks, we'd cut back on the amount of formula she was given throughout the day. We would keep track of her oral intake and her weight, to make sure we had the data to support our own observations. Things were going very well and we were given the approval of the GI doctor at our June appointment to continue as planned.
As of June 27 (Anna's 11th birthday), Anna is no long receiving formula. She still receives three "meals" of our homemade purees and a bolus of water in the mornings, but that's it. We are hopeful that Anna can continue to make forward progress in this regard so that some day she can be completely off of g-tube feeds. (What an amazing goal to have reached and what an amazing goal to have!)
PT update - In May, Anna had an OT/PT evaluation in preparation for her intensive therapy program. Here are a few of her numbers.
For a balance test, she had previously scored 24 in 2016 and 28 in 2017. The maximum score for children over 6 is 54. In May, Anna scored 39!
Last August, Anna could walk 140 feet using her crutches during the 6 minute walk test. In May, she walked 855 feet with her crutches, while wearing her backpack. Whoa.
Last August, Anna could walk 10 meters using her walker at a speed of 1.16 m/s. With her crutches, she walked at a pace of 0.15 m/s. In May, she went 1.13 m/s with her crutches, 0.6 m/s with two single point canes, and 0.69 m/s independently. That's right, people, she's now being testing on how fast she can walk without using any assistive devices. She was certainly on a roll the day that she did her evaluation, but everyone is looking forward to seeing what this summer's Advance program has in store for her.
Anecdotally, Anna prefers to walk on her own in our house. She either cruises from object to object and wall to wall, or walks carefully on her own. More than once in the last week, Ethan has said, "Mom, Anna looks normal!" when Anna is standing in the middle of a room. (We then have a conversation about what normal means.) Given the choice, Anna more often asks to use her crutches when we're out and about. If she knows there is a lot of walking, then she'll ask for her walker.
This journey has been several years in the making, and will continue for the rest of dear Anna's life.
Sunday, July 8, 2018
Summertime!
Now that we've been back at our home for a solid week (and Matt only had to work two days last week), we feel like we're hitting our summer groove a little more.
While Matt was at work on Tuesday, the kids and I dealt with the ripening produce (again). They weren't nearly as excited about stringing peapods, cutting broccoli, or slicing cucumbers as they were the first couple of times. Oh, well. It's all part of life, right?
The kids also have been making great use of the pool on these hot afternoons.
I think that particular afternoon I was dealing with quite a bit of communication regarding Anna. I've been able to play with them a few times out in the water, just not every time now.
For the Fourth of July we tried to brave the heat and bugs for a Concert on the Square in downtown Madison. The kids were excited to try it out and I was looking forward to the patriotic-themed music.
But ... it was really hot and really buggy. And the weather was kind of iffy with the potential for a sudden rainstorm.
So we bailed out early after only listening to the first half of the concert, came home for ice cream, and then found a random parking lot to sit in to watch some fireworks. Again, we tried sitting outside of the van, but the mosquitoes are TERRIBLE right now.
Thursday morning the kids and I went over to a friend's house for a playdate. We all decided that it was probably a good thing we had planned something for the morning after the 4th. At least the kids were distracted and weren't too crabby in front of one another.
Friday was another garden morning before the kids and I took advantage of our last "free" day for a month. With Anna's therapy month starting on Monday and Kate participating in a few camps in the next few weeks, too, our schedule is going to be more cramped than it has been this last week.
We decided to try out Troll Beach in Stoughton for a bit. Our kids are suckers for beaches. Sure enough, the sand was a hit with our crew.
Ethan, however, liked the inflatable slip n' slide even more.
The sun was getting to us after a couple of hours so we decided to go home and, since we still had our swimming suits on, swim in our pool :) With all of the heat and sunshine lately, our pool's temperature was 95 degrees! It was more like a hot tub than a pool that afternoon!
Saturday was a day at home, with Matt and I finally feeling like we are caught up with things at our house and around the yard. Because so many things were finally crossed off the endless "to do" list, Sunday we spent some of the afternoon at the Stoughton Fair.
Kate and I had visited once earlier in the week (since she is exhibiting at the Dane County Fair in a few weeks), and she really wanted to go back. We decided to go during a free tractor pull competition so that people could bounce back and forth between the machines and the animals :)
And now we must set the alarms for the morning again. Anna's therapy this summer is from 8 a.m. until noon, so we can no longer lay around until 7:30 or later. Sigh ...
While Matt was at work on Tuesday, the kids and I dealt with the ripening produce (again). They weren't nearly as excited about stringing peapods, cutting broccoli, or slicing cucumbers as they were the first couple of times. Oh, well. It's all part of life, right?
The kids also have been making great use of the pool on these hot afternoons.
I think that particular afternoon I was dealing with quite a bit of communication regarding Anna. I've been able to play with them a few times out in the water, just not every time now.
For the Fourth of July we tried to brave the heat and bugs for a Concert on the Square in downtown Madison. The kids were excited to try it out and I was looking forward to the patriotic-themed music.
So we bailed out early after only listening to the first half of the concert, came home for ice cream, and then found a random parking lot to sit in to watch some fireworks. Again, we tried sitting outside of the van, but the mosquitoes are TERRIBLE right now.
Thursday morning the kids and I went over to a friend's house for a playdate. We all decided that it was probably a good thing we had planned something for the morning after the 4th. At least the kids were distracted and weren't too crabby in front of one another.
Friday was another garden morning before the kids and I took advantage of our last "free" day for a month. With Anna's therapy month starting on Monday and Kate participating in a few camps in the next few weeks, too, our schedule is going to be more cramped than it has been this last week.
We decided to try out Troll Beach in Stoughton for a bit. Our kids are suckers for beaches. Sure enough, the sand was a hit with our crew.
Ethan, however, liked the inflatable slip n' slide even more.
The sun was getting to us after a couple of hours so we decided to go home and, since we still had our swimming suits on, swim in our pool :) With all of the heat and sunshine lately, our pool's temperature was 95 degrees! It was more like a hot tub than a pool that afternoon!
Saturday was a day at home, with Matt and I finally feeling like we are caught up with things at our house and around the yard. Because so many things were finally crossed off the endless "to do" list, Sunday we spent some of the afternoon at the Stoughton Fair.
Kate and I had visited once earlier in the week (since she is exhibiting at the Dane County Fair in a few weeks), and she really wanted to go back. We decided to go during a free tractor pull competition so that people could bounce back and forth between the machines and the animals :)
And now we must set the alarms for the morning again. Anna's therapy this summer is from 8 a.m. until noon, so we can no longer lay around until 7:30 or later. Sigh ...
Tuesday, July 3, 2018
Happy Birthday, Anna!
On Wednesday, June 27, Anna Elizabeth turned 11! (Yes, I know that this happened almost a week ago now. And yes, I know that we arrived back from our trip the day before Anna's birthday. There's been a lot going on at our house recently.)
In the past year, Anna has continued to grow and mature in many aspects of her life. She has made some amazing progress with her skills (more on all that in a later post) and is looking forward to seeing what additional progress she can make this summer. With her increased physical capabilities come increased responsibility and expectations. Sometimes these transitions are smoother than others.
Anna still has the ability to have wisdom beyond her years, but she is also still just a kid. Her favorite activities are creating art with different pattern making tools, playing with her siblings, playing games, solving math puzzles, and helping when she can. She's come a long way.
We had been prepping Anna for having an extended birthday celebration, due to the fact that we were arriving home from our trip the day before her birthday. But we were still able to celebrate much on her actual special day.
Cards and gifts were enjoyed in the morning.
During the morning hours, the kids helped prepare and freeze peapods and broccoli, in the midst of all of those loads of laundry. At some point, we managed to make Anna's requested birthday dessert, homemade chocolate cake. (I failed to get two matching 1s for the cake, so we pulled out a couple of mismatched 1s. No big deal :)
Anna and Ethan came along for a quick run to the grocery store so we could get a few supplies for Anna's requested birthday dinner. After coming down off of our vacation trip, I'd say it was a pretty good birthday for our oldest.
Just before we left for our trip, we were disappointed to learn that we would probably be missing the entire strawberry season here in southern Wisconsin. However, another one of Anna's birthday surprises was that our favored strawberry farm was scheduled to be OPEN for picking on Thursday, June 28! So we hauled ourselves out of bed early that morning and spent an hour or so picking 15 lbs. of berries.
Kate was my biggest helper this year.
Anna stuck with it for a long time.
But strawberry picking is not Ethan's favorite activity ...
That afternoon the kids helped me make some strawberry jam! Kate and I managed another quick trip to get more strawberries on Saturday morning to round out that harvest. Hooray!
Anna participated in the mini-golf without her walker or crutches (just Mom), so she was ready for a little break while the others did the ropes course.
None of us had ever seen a Tommy Bartlett Show, so we were very impressed by many parts of it.
By the time the show was over, we were famished. Although Matt and I were hoping for a "sit down" restaurant, birthday girl choose Culver's. Oh, well :) When our bellies were filled, we were ready to crash for the night. It's a good thing we did, too, because the next day we all used plenty of energy!
After breakfast at Cracker Barrel, we got ourselves ready for the opening of the indoor water park at 9:30 a.m. At that time of day on a Monday, there are NO lines. We did the tall waterslides 6 times in a row without any waiting. (Anna climbing the stairs 4 of those times, with one hand on the railing and one hand holding my hand.) Then the ladies in the family played in the wave pool while the boys explored the medium water slides. We managed another three trips down the big slides before we decided to try the outdoor waterpark. By that point, Anna crashed on a lounge chair, but Kate and Ethan found a second reserve of energy and tackled the medium water slides again and again.
We rounded out our water park time with a few trips down the big outdoor slides. Boy, those are fast! In the future, we now know that our family can handle hours upon hours of water park time. Good to know.
By the time we changed and found a place to eat our picnic lunch, it was 1:30 p.m. Yikes!
After a bit of refueling, though, the kids wanted to play at the playground. Seriously!?
But birthday girl wanted to make sure we used our passes to the Timbavati Wildlife Park before we went home. So, on another hot, hot day, we did, but stuck to the shade as much as we could.
We all got a kick out of the llamas who had been very recently shaved :)
By the time we reached the sun, the kids were ready to be done.
Well, except Kate. She would have stayed there for a few more hours.
We made a quick stop at Culver's to get our ice cream that we didn't get the night before.
And this boy was OUT about 5 minutes after he was done with his dessert. His body was t-i-r-e-d.
In the past year, Anna has continued to grow and mature in many aspects of her life. She has made some amazing progress with her skills (more on all that in a later post) and is looking forward to seeing what additional progress she can make this summer. With her increased physical capabilities come increased responsibility and expectations. Sometimes these transitions are smoother than others.
Anna still has the ability to have wisdom beyond her years, but she is also still just a kid. Her favorite activities are creating art with different pattern making tools, playing with her siblings, playing games, solving math puzzles, and helping when she can. She's come a long way.
We had been prepping Anna for having an extended birthday celebration, due to the fact that we were arriving home from our trip the day before her birthday. But we were still able to celebrate much on her actual special day.
Cards and gifts were enjoyed in the morning.
During the morning hours, the kids helped prepare and freeze peapods and broccoli, in the midst of all of those loads of laundry. At some point, we managed to make Anna's requested birthday dessert, homemade chocolate cake. (I failed to get two matching 1s for the cake, so we pulled out a couple of mismatched 1s. No big deal :)
Anna and Ethan came along for a quick run to the grocery store so we could get a few supplies for Anna's requested birthday dinner. After coming down off of our vacation trip, I'd say it was a pretty good birthday for our oldest.
Just before we left for our trip, we were disappointed to learn that we would probably be missing the entire strawberry season here in southern Wisconsin. However, another one of Anna's birthday surprises was that our favored strawberry farm was scheduled to be OPEN for picking on Thursday, June 28! So we hauled ourselves out of bed early that morning and spent an hour or so picking 15 lbs. of berries.
Kate was my biggest helper this year.
Anna stuck with it for a long time.
But strawberry picking is not Ethan's favorite activity ...
That afternoon the kids helped me make some strawberry jam! Kate and I managed another quick trip to get more strawberries on Saturday morning to round out that harvest. Hooray!
The final aspect of our family's celebration of Anna's birthday was a trip to the Kalahari. Before our trip, we'd offered to Anna a planned birthday party, or a quick family visit to our favorite Dells destination. After weighing her options, Anna chose the Kalahari, so we snatched up one of their great summer deals and made a quick trip on Sunday-Monday.
After early church on Sunday, we packed everything up, had an early lunch, and made the quick drive to arrive by the early afternoon.
We were able to get in a round of mini-golf and a trip through the ropes course before driving into Lake Delton for the Tommy Bartlett Show.
Anna participated in the mini-golf without her walker or crutches (just Mom), so she was ready for a little break while the others did the ropes course.
Even though we have been experiencing hot and humid weather here for awhile, the outdoor waterski show was quite pleasant. Shade and a little breeze make a huge difference.
None of us had ever seen a Tommy Bartlett Show, so we were very impressed by many parts of it.
By the time the show was over, we were famished. Although Matt and I were hoping for a "sit down" restaurant, birthday girl choose Culver's. Oh, well :) When our bellies were filled, we were ready to crash for the night. It's a good thing we did, too, because the next day we all used plenty of energy!
After breakfast at Cracker Barrel, we got ourselves ready for the opening of the indoor water park at 9:30 a.m. At that time of day on a Monday, there are NO lines. We did the tall waterslides 6 times in a row without any waiting. (Anna climbing the stairs 4 of those times, with one hand on the railing and one hand holding my hand.) Then the ladies in the family played in the wave pool while the boys explored the medium water slides. We managed another three trips down the big slides before we decided to try the outdoor waterpark. By that point, Anna crashed on a lounge chair, but Kate and Ethan found a second reserve of energy and tackled the medium water slides again and again.
We rounded out our water park time with a few trips down the big outdoor slides. Boy, those are fast! In the future, we now know that our family can handle hours upon hours of water park time. Good to know.
By the time we changed and found a place to eat our picnic lunch, it was 1:30 p.m. Yikes!
After a bit of refueling, though, the kids wanted to play at the playground. Seriously!?
But birthday girl wanted to make sure we used our passes to the Timbavati Wildlife Park before we went home. So, on another hot, hot day, we did, but stuck to the shade as much as we could.
We all got a kick out of the llamas who had been very recently shaved :)
By the time we reached the sun, the kids were ready to be done.
Well, except Kate. She would have stayed there for a few more hours.
We made a quick stop at Culver's to get our ice cream that we didn't get the night before.
And this boy was OUT about 5 minutes after he was done with his dessert. His body was t-i-r-e-d.
A very short, but very fun, birthday celebration trip for Miss Anna and family.
Monday, July 2, 2018
Road Trip - Part 5
Saturday, June 23, we drove from Thermopolis, Wyoming, to Chamberlain, South Dakota. The drive itself was beautiful and beautifully uneventful. We didn't realize that we would be driving through the Big Horn Mountains until we were actually driving through the mountains. The entire morning passed quickly due to the scenery.
Saturday evening we stopped at Matt's parents' home for a quick patio dinner before another rainstorm. We had enough of a chance to see Grandma's flowers, visit with the grandparents, and get some wiggles out before checking in to our hotel and getting settled for the night.
Sunday morning was a big day for the Senior Mischnicks. Mark not only celebrated 20 years of pastoral ministry, but he also presided at his final service before retiring!
Amazingly, all three of his children, two of their spouses (Pastor Chris had other obligations in nearby Huron), and his eleven grandchildren were all able to worship together for Mark's last service.
After church, the congregation hosted a brunch for the Mischnicks and all who came to wish Mark well. The cousins formed groups quickly and easily by age. The four oldest boys (Mark, Jonah, Seth, and Nate) played cards.
The four middlest girls (Anna, Kate, Ruth, and Julia) goofed of and played pretend.
The youngest three (Ethan, Claire, and Zeke) played some imagination game outside.
The whole crew hung out at Grandma and Grandpa's Chamberlain house one last time, admiring Grandma's flowers, playing cards, and visiting with one another, before driving over to the Mischnicks' new home in Mitchell. More card games, more imagination, and more visiting ensued.
Ruth and Kate continued their writing project in earnest. Those two discussed, drew, outlined, and planned for a few hours that afternoon.
During this time, we did out best to take some family pictures. Here are a few of what I got on my camera. I may add some more as they become available.
I almost like the goofy picture better than the smiling one :)
Someone must have made these siblings laugh at just the right moment :)
When things finally wound down for the evening and we got settled in our hotel, our crew was t-i-r-e-d. This was the night/morning that we all slept in until almost 8 a.m. That NEVER happens at home.
A few months ago when we realized that all of the family was going to be in South Dakota for Mark's retirement, we decided to extend the visit by one day and consider Monday the "family" day. We started the morning at the Corn Palace (after we barely made it to the hotel breakfast on time!).
Although our family had made this tourist stop a couple of years ago, it didn't stop us from having fun. Here, the girls are husking the giant ear of corn.
The murals of last year were in the beginning stages of being transitioned over to the next murals. It was fun and educational to watch the workers going through this process.
This family doesn't need a lot to be entertained, although the adults all knew when it was time to leave ... the gift shop was a little too enticing.
We all plopped down for the educational video as well. It's amazing what you can learn from those!
After the Corn Palace, we all invaded a local Culver's. Surprisingly, the 19 of us were able to sit with/near each other!
For the afternoon, we took one final 45 minute journey up to Huron, SD, to see Pastor Chris' new church. Actually, the weather wasn't cooperating for our hopes of hanging out a park, so Chris' congregation lovingly allowed us to invade their activity center for the afternoon.
The men and big boys in the group played an exciting game of Around the World.
The girls got out some great coloring books.
And Anna played some more games ... surprise, surprise!
Although we were all tired, everyone was able to enjoy the company of those we hadn't seen in a long, long time.
And others had the opportunity to act like the big kids that they still are.
Grandpa and Grandma were able to come for some of the time, but they were (very understandably) tired.
The last few hours together were spent celebrating these kids. Mark was due to turn 14 on Wednesday; Anna was turning 11 on Wednesday as well; Julia was able to celebrate her 7th birthday that very day.
And then we were done. The next day was our LAST day of driving, with only 7.5 hours anticipated. Hip, hip, hooray!
Here's a few moments of that final day of driving. First, there was that time when two of the three kids were sleeping.
Then, there was the child who simply does not sleep in the car anymore.
There was also that time when the gas light came on, but we were still 5-10 miles from the next gas station. (Don't worry, we made it in time.)
And finally, there was this. Enjoy!
Saturday evening we stopped at Matt's parents' home for a quick patio dinner before another rainstorm. We had enough of a chance to see Grandma's flowers, visit with the grandparents, and get some wiggles out before checking in to our hotel and getting settled for the night.
Sunday morning was a big day for the Senior Mischnicks. Mark not only celebrated 20 years of pastoral ministry, but he also presided at his final service before retiring!
Amazingly, all three of his children, two of their spouses (Pastor Chris had other obligations in nearby Huron), and his eleven grandchildren were all able to worship together for Mark's last service.
After church, the congregation hosted a brunch for the Mischnicks and all who came to wish Mark well. The cousins formed groups quickly and easily by age. The four oldest boys (Mark, Jonah, Seth, and Nate) played cards.
The four middlest girls (Anna, Kate, Ruth, and Julia) goofed of and played pretend.
The youngest three (Ethan, Claire, and Zeke) played some imagination game outside.
The whole crew hung out at Grandma and Grandpa's Chamberlain house one last time, admiring Grandma's flowers, playing cards, and visiting with one another, before driving over to the Mischnicks' new home in Mitchell. More card games, more imagination, and more visiting ensued.
Ruth and Kate continued their writing project in earnest. Those two discussed, drew, outlined, and planned for a few hours that afternoon.
During this time, we did out best to take some family pictures. Here are a few of what I got on my camera. I may add some more as they become available.
I almost like the goofy picture better than the smiling one :)
Someone must have made these siblings laugh at just the right moment :)
When things finally wound down for the evening and we got settled in our hotel, our crew was t-i-r-e-d. This was the night/morning that we all slept in until almost 8 a.m. That NEVER happens at home.
A few months ago when we realized that all of the family was going to be in South Dakota for Mark's retirement, we decided to extend the visit by one day and consider Monday the "family" day. We started the morning at the Corn Palace (after we barely made it to the hotel breakfast on time!).
Although our family had made this tourist stop a couple of years ago, it didn't stop us from having fun. Here, the girls are husking the giant ear of corn.
The murals of last year were in the beginning stages of being transitioned over to the next murals. It was fun and educational to watch the workers going through this process.
This family doesn't need a lot to be entertained, although the adults all knew when it was time to leave ... the gift shop was a little too enticing.
We all plopped down for the educational video as well. It's amazing what you can learn from those!
After the Corn Palace, we all invaded a local Culver's. Surprisingly, the 19 of us were able to sit with/near each other!
For the afternoon, we took one final 45 minute journey up to Huron, SD, to see Pastor Chris' new church. Actually, the weather wasn't cooperating for our hopes of hanging out a park, so Chris' congregation lovingly allowed us to invade their activity center for the afternoon.
The men and big boys in the group played an exciting game of Around the World.
The girls got out some great coloring books.
And Anna played some more games ... surprise, surprise!
Although we were all tired, everyone was able to enjoy the company of those we hadn't seen in a long, long time.
And others had the opportunity to act like the big kids that they still are.
Grandpa and Grandma were able to come for some of the time, but they were (very understandably) tired.
The last few hours together were spent celebrating these kids. Mark was due to turn 14 on Wednesday; Anna was turning 11 on Wednesday as well; Julia was able to celebrate her 7th birthday that very day.
And then we were done. The next day was our LAST day of driving, with only 7.5 hours anticipated. Hip, hip, hooray!
Here's a few moments of that final day of driving. First, there was that time when two of the three kids were sleeping.
Then, there was the child who simply does not sleep in the car anymore.
There was also that time when the gas light came on, but we were still 5-10 miles from the next gas station. (Don't worry, we made it in time.)
And finally, there was this. Enjoy!
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