Sarah Katenstein

Although we had expected next week to only have to go to Birmingham once, when we went to therapy on Friday it was recommended that Sarah Kate continue to go twice a week for a while longer. Although it was up to us, we have decided to continue the twice a week trips. It will be more difficult on us than one day per week would be, but we believe it is for the best.

A dear lady from our church, Beverly Vaughan, has been sending little notes to Sarah Kate in the mail. Each is just a sentence or two of encouragement, but they are appreciated as we journey down this road. We received one of the notes today. It read:

Sarah Kate, I am so proud of you and so glad Jesus is helping you to walk!! Miss Beverly

Although Beverly's words were written and mailed earlier, they were so fitting for today. The weather here has been cold and icy, so we’ve spent the whole day indoors. Sarah Kate has used this day to her advantage – she has walked all over the house! It started out with walking from this piece of furniture to that one, crossing the hall from this door to another, and so on. She used her canes only once the whole day. Let me say that again – she used her canes only ONCE all day long. Scott even asked her tonight if she would like to walk all by herself to her Sunday School class in the morning, and she said “yes.” She walked to the refrigerator at dinner to get out a container of yogurt. She went back for the ketchup. She walked to the tub at bathtime. She fell, but only rarely.

Sarah Kate's steps are the lurching, halting steps of a tiny Frankenstein, but they are the most wonderful sight to behold! I looked outside the front door tonight, checking on the sleet that was falling steadily. The street light at the corner of our yard was reflected in the window of the house across the street, in the distinct shape of a cross. Yes, Jesus is helping Sarah Kate to walk.

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." – Matthew 19:14

These Boots Are Made for Walking

So sorry to those of you who have been religiously checking the blog, only to be disappointed that there is nothing new posted. It's just tough to get around to it sometimes, but I am finally getting around to it - somehow the weekends are tougher that the weekdays. Anywho...

On Thursday afternoon, Sarah Kate walked into physical therapy on two quad canes and walked out on only one. We had encouraged her to try to take a few steps with just one cane, which she did, although under duress. We then suggested that she try to talk a few more feet to the sucker basket, which she also did. Once she had her sucker in hand, she didn't really want to have to give it to me so that she could take her other cane back, so she walked the rest of the way to the car on just the one cane.

On Friday, we went back to Birmingham and Sarah Kate surprised everyone by walking into the therapy office on just the one cane. She was so proud of herself! She got her new "duck canes" on Friday and they are just straight 3/4" PVC poles with the new duck feet rubber tripod cane bases. They don't even have handles - they are just straight poles about 6" taller than the top of her head. She has done great with them, though! We are encouraging her to try to walk with just one cane at times, although it's still a little tough for her. Her new "boots" finally came in, as well, and actually fit this time! We went and bought her some brand new shoes to wear over the new braces - no Nikes this time - Reeboks in a size 8-1/2 wide.

On Sunday, she practiced standing up from a bench, holding the standing position, and then walking. She wasn't particularly enthuiastic about doing it, but she cooperated, nonetheless. M&M's and jellybeans are becoming a standard reward at our house for working hard and not complaining.

Monday morning saw us back in Birmingham for PT and OT. We were fortunate to have a morning appointment this time, so she was not as tired when we arrived and we didn't have to eat our tacos in the car. She walked in using the duck canes, and then walked across the gym without holding onto anything. At the time, she had a large belt, similar to a weightlifter's belt, around her waist because she was about to use the bungees. The therapist, Corinne, and I both believe that she walked so well because she felt more secure with the belt around her waist, so Corinne gave us an elastic brace to wear around her middle when she is practicing walking.

When I sat down to type tonight, I at first was thinking that I didn't have all that much to say. As I sat here, it seemed at first glance that not much progress had been made since my last post. I kept looking over at Sarah Kate as she sat at her table eating mac & cheese and realized that a LOT has happened in just a week's time. At times I'm so focused on getting her to do this or that and taking her here or there, that the big picture gets lost. Continue to pray for us as we press through the daily grind. The other issue I'm having is that she spends so much time "working" that it seems like she is missing out on some of the carefree joy of childhood. It takes some effort for us to just sit back, relax, and wait on the Lord.

In his heart a man plans his course, but the LORD determines his steps. - Proverbs 16:9

It Rained & We Got Some Duck Feet

Monday was a nasty day to be driving, although I was thankful it was only rain and not the 1-2" inches of snow and ice that had been predicted on Sunday night. Sarah Kate and I headed back to Birmingham, with a last minute location switch that put us a little behind schedule. We made it on time, though (both of us with drive-thru taco on our face), to her OT/PT appointment.

Sarah Kate is still nervous about letting go to do things, but she is improving every day. On Monday she stood approximately 20-25 seconds independently, and took 5-6 good independent steps. Lisa made the statement after observing her walk that she has it in her to do it, if she can just get over that fear she'll be walking by herself. Sarah Kate also spent some time in the swings - suspended (picture flying like Superman) in a harness, and then standing on a flat swing (picture a scale) holding on while it moved. She was even able to walk around the swing. The purpose of the swings is to help with her proprioception.

Sarah Kate will have some new canes soon! The current quad canes that she uses are big and bulky, and actually probably slow her down a little bit because the bases are so large that they get in the way of her feet. Her new canes will be made of PVC (homemade canes - Daddy will be proud!) and will have "duck feet" bottoms. The "duck feet" base is actually a flexible tripod style rubber base - more stable than just a tip, but less bulky and awkward than the quad canes. It's a visible symbol of progress!

We also received our dates for the intensive therapy program. The program is four hours/day, five days/week, for three weeks in Birmingham. It's purpose, as I understand it, is to really "fine tune" her skills. After the program she will continue to have therapy, but much less frequently than she is now. She will start the program on April 24 and end on May 12.

Sarah Kate is doing very well in her therapy. She cooperates and pays attention (better than most 3 year olds, anyway, is what I was told) and she works very hard. It's easy to tell when she is afraid, but she presses forward, anyway. I am very proud of her! She's getting lots of suckers and M&M's these days. We are both exhausted - it is not unusual for her to climb back into her bed just a few hours after getting up.

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. - Romans 5:3-4

On the Road Again

I've gotten a lot of questions about the blog (in particular, how frequently I plan to post) now that we are home. I've been torn about what to do - the real world is squeezing my time, unlike when we were at the apartment when so many things were "on hold" - so I think I've decided to post twice a week for awhile. We are going to Birmingham twice a week (Mondays and Fridays as of right now), so I'll try to post following each visit.

Physical therapy in Decatur went well this past week. The therapists that worked with her were impressed with her progress thus far. We actually even ran into Sarah Kate's previous physical therapist (from Early Intervention), Rhonda, and she, literally, could not take her eyes off of Sarah Kate. She even expressed an emphatic "that's not fair" while she watched the PT stretching her, because she was doing with ease what Rhonda had struggled with for over two years. Seeing Rhonda gave me a boost, because being with Sarah Kate every day it's more difficult to see the big picture. Sarah Kate was very well behaved at the sessions - mostly, I think, because it was a new place with new "stuff" and new people. We will be in Decatur for therapy Tuesday, Wednesday, and Thursday for now and in Birmingham on Mondays and Fridays. We got a loaner stander from the PT office here, but it's a lot different than the one she used in Birmingham. Instead of being stationary, it rolls (think of it as a wheelchair that you stand up in). She is using it to strengthen her standing posture and stretch her hamstrings, and she thinks it's great fun because she's learning quickly how to maneuver it around the house. Our freshly painted living room and kitchen walls are in serious danger!

Friday afternoon we were back in Birmingham with Carrie. Sarah Kate did really well, and tried something new this time. She was standing on an exercise mat with a wide leather belt around her waist. The belt was then connected with bungees to the walls of a cage on either side of her. She stood catching and throwing a ball and also practiced jumping up and down. The bungees were moved around to give less and less support. She also stood unassisted for several seconds without fear (and without awareness that she was doing it!) We will not be seeing Carrie for the next several weeks, and when we were leaving Carrie told Sarah Kate that the next time she came back she wouldn't need to use the canes. I am cautiously optimistic about what she said. I don't want to be disappointed or grow impatient, but I also believe strongly that Carrie wouldn't say something like that directly to Sarah Kate without a great deal of confidence that it will be true. If she's right, what a miracle that will be!

I've received once again the verse that has been shown to me at every turn along this journey, beginning with scheduling this surgery way back in August, so I'll reprint again today.

...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. - Isaiah 40:31