Uno, Dos, Tres, Cuatro

Sarah Kate has just finished Day 4 of UEU, and she is doing great! No battle of the wills has been necessary, and for that I am truly thankful. She has been extremely cooperative and has worked very hard every day. I don't think I could work out for 3-4 hours at a stretch every day, but she has done it without complaining a bit. I have let her choose each day whatever she wanted to eat for lunch (I know they say food shouldn't be used as a reward, but we've gotta eat....) and she has requested Mexican food every day. I did manage to sway her toward Taco Bell this afternoon because we are on the verge of being on a first-name basis with the folks at Habanero's.

We hit a little snag earlier in the week. Sarah Kate had a slight fever Tuesday night, and although she seemed alright the next morning, about midway through UEU on Wednesday she felt a little bit warm. We were just down the hall from the after hours clinic so we had them check her temperature, which was 101.1. I couldn't believe she had been working so hard even with a fever. We left early and I brought her back here to rest. She took some Motrin and slept for about 3 hours in the afternoon and seems to be much better today.

I could see a difference today in Sarah Kate's stride after being in the Adeli suit. It is longer and more typical-looking. She is also doing a better job of walking with her arms down, although she still has to be reminded to do so. A few other things they are working on during these 3 weeks are: learning to dress herself, learning to jump, and stepping on/off a curb without support.

We are enjoying it here at Papa and Bebe's house. I haven't had to do a thing since I've been here (Bebe even did our laundry!) and Sarah Kate has enjoyed being able to look out in the morning and see the horses. Papa has a brand new colt that she is quite enthralled with, and she also likes riding to the barn and back in Papa's golf cart. The drive in to UEU is only about 30 minutes, most of it on the interstate, so that's not too bad.

Sarah Kate will be working with Lisa one-on-one on Friday morning, and she jokingly told Sarah Kate to "get ready" when we left yesterday. After that we will be going home to Decatur until Sunday afternoon.

Have a wonderful day!

The LORD has done great things for us, and we are filled with joy. - Psalm 126:3

Back in the Saddle Again

Monday marked our return to Birmingham for three weeks of intensive physical therapy. We weren't able to get the apartment again, so this time we are staying with my dad and stepmom ("Papa & Bebe"). Their home is about 30 minutes to the Children's South therapy office, but that's alright because it's not crucial that we be close like it was following the surgery when Sarah Kate was unable to ride for more than a few minutes in the car. Although it is a longer drive in each morning, Sarah Kate only goes once per day (instead of twice like before), and it's nice to have some help with her (plus I don't have to clean or cook!) Papa & Bebe have horses, a dog, and multiple felines, so Sarah Kate is going to enjoy it here. We will be coming home on Fridays and returning on Sundays.

Yesterday was her first day of UEU ("Universal Exercise Unit"), as they call it, but the first day was primarily an evaluation of her progress and any "body issues" she has, such as joints that aren't positioned just right. They also studied her flexibility and watched her do things like walk, sit, etc. The evaluation took about three hours total and she began working today.

We arrived at 8:30 this morning and her session started off with heat and massage. After that, she did some exercises (disguised as play) to help strengthen her trunk, and did a "6-minute walk" where they got her to walk down and back in a long hallway for 15 minutes (just kidding!) and kept track of how many times she fell down (or didn't). Following the 6-minute walk, she did some exercises using pulleys with sandbag weights. She got a chance to have snack (cheese, peanut butter crackers, peanuts, and apple juice), and then was fitted into the Adeli suit to work some more. She finished up about 1:00 and then we went for some well-deserved lunch - she requested Mexican food!

The Adeli suit (pronounced like where you'd go to get a sandwich) is a broad-shouldered vest, knee pads, and shorts set with a series of hooks and velcro straps, and a pair of Vans tennis shoes modified to work with the suit. The therapists take a lot of little bungees and connect them to various points on the suit (I can't begin to estimate how many options exist) and onto the shoes. The purpose is to hold her body as close to perfect alignment as possible - hips, ankles, knees, thighs, back, and so on. She then does regular therapy activities in the suit, and the intent is to train the body (including the brain) to do things the "right" way. If you'd like to read more about it, follow this link: http://www.adeli-suit.com/English/adeli_suite.htm

We got some news on the insurance front! Scott heard from our case manager at BCBS today and they have worked out an agreement with Children's Health System to cover the 15 UEU visits at a reduced amount. The agreement is instead of, not in addition to, the 30 visits with the cap that we were given last week. What that means for us is that instead of buying a loaded Toyota Camry, we only owe half of one :-) Although that sum is still significant, it's much more manageable than what we were looking at just a few days ago. It's not coming as quickly as we would like sometimes, but God is providing for us. Thank you to everyone who has prayed for us and continues to pray for us.

I'll do my best to blog more frequently during the next three weeks (I'm not cooking or cleaning, so I should have time, right?) I appreciate all of you who have faithfully read the blog and encouraged me throughout this journey. I am constantly surprised at the messages that I receive and to hear exactly who is reading the blog. God bless you all!

Be joyful in hope, patient in affliction, faithful in prayer. - Romans 12:12

Good News - Bad News

After having such a great week two weeks ago, things have kind of gone downhill. Sarah Kate has not done as well walking over the past week, and even reverted to using her duck cane a few times. Her appetite increased a good bit toward the end of the week and she seems to be sleeping more, so we are hopeful that this setback is temporary and related to a growth spurt. A simplified explanation of why this would be problematic is that when children have growth spurts, the bones grow quicker than the muscles, and the muscles grow and stretch to catch up. Children with cerebral palsy have muscles that are already tight, and they aren't able to keep up. Before Sarah Kate's surgery, it was always visibly obvious when she was growing; her right leg was tighter than her left, and the right foot would begin to turn out. As the muscles "caught up," the foot would come back to normal.

We got what we thought was great news about our insurance several days ago, but it has turned out to only be modestly good news. BCBS authorized 30 additional therapy visits for Sarah Kate, but they placed a cap on the total amount of only $3000. We are very disappointed in their response, which is far short of what will be necessary. Sarah Kate starts the intensive therapy program on Monday (the 24th), and we had hoped to be able to know going in that at least this portion of her therapy would be covered. BCBS has moved incredibly slow throughout this process (it took over a month for them to authorize this small amount), so we know that at this point we're just going to have to take that leap of faith and pray that God will provide a way.

Please continue to pray for us.

I have set the LORD always before me. Because he is at my right hand, I will not be shaken. - Psalm 16:8

Sarah Kate Can Walk!

Alright, I know that the title for this blog may not seem like much of a revelation. Many of you have already seen Sarah Kate take independent steps, and maybe even weeks ago. What has been lacking, though, is Sarah Kate's desire to walk anywhere, anytime, under most any circumstances - in short, for it to be natural to her. We've turned a corner this week, though, and I'm so happy to be able to say it. Sarah Kate can walk. She turns corners, maneuvers around the toys, and doesn't try to conserve steps. She hasn't used a cane in several days. Although she falls a lot (and still looks a little like Frankenstein) and does a lot of moving between things instead of typical starting and stopping, she doesn't hesitate anymore to walk. I can not put into words what an achievement it is.

Some of you have shared your thoughts and said prayers regarding our insurance situation. We have not given up and are still pushing - squeaky wheel and all that jazz. Children's Hospital has our account temporarily on hold (doesn't mean the charges aren't accumulating - just that they aren't expecting payment right away) until this thing is settled, and the local PT is being very good to work with us, as well. Don't stop praying for us! The biggest financial hurdle we have is the upcoming intensive therapy program - it's very expensive (almost half of that "loaded Toyota Camry" I mentioned before), but is supposed to be the equivalent of months of PT. It is all worth it, of course!

On a personal and vulnerable level, I'm asking for prayers, as well. This whole process is incredibly rewarding, but also terribly stressful, and it is taking a toll on me. I always say that I can stand anything that I can see the end of, but the end here still seems far, far away.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. - 1 Peter 5:10