Where have we been????
Well, we are currently on our 9th trip to Philly since January, and we have been coming every 1 1/2 to 2 1/2 weeks for casting, staying 4-5 days each time. That amounts to us being away from home 10 days each month, with 24+ hours of driving for each trip. As you might imagine, life has been very busy… but good! I have had to let go of things that weren’t important in order to maintain the things that are. So we are nearing the end of our homeschool year (on time!!! Woo hoo!!!), but our family room is a wreck because I haven’t been able to properly put things away yet (it turns into a storage space of sorts during the winter because we don’t heat it). Some things are worth ignoring to buy the time to do them right, in my humble opinion!
We have had amazing help from our friends and family that have enabled us to have a sense of almost normalcy during this chaotic time, and we are so thankful to all of you!!!
Alexandra is going to be getting her 20th set of casts on Monday and we’ll be headed home on Tuesday. We started this trip 2 weeks ago thinking that we’d be here for a week and a half and head home… but then we had our follow up with Dr. Zlotolow (who is wonderful, by the way!), and he suggested a surgery on A’s left arm that made perfect sense to increase her function (her left arm has the tightest contractures and doesn’t get a lot of use). His surgical waiting list is about 2 months long, and so I said that I wanted it done as soon as we could because we will be done with casting by then and I was looking forward to us having a break from our trips… His nurse told us we could do it on the 17th because there had just been a cancellation, and I was floored. That meant staying here an extra week, but it made sense because A wouldn’t have a lot of time to stress about it (she fixates on things sometimes), we wouldn’t have to make another separate trip for it ($500 saved), and I wouldn’t have to drive out again… win!
The caveat was that for this trip I had all of my most dependent children with me… the baby, my three year old, and A- and they were starting to have a hard time at the one week mark (being away from your family, home and schedule is not a fun thing!), so how on earth could I handle an operation and post-op period alone with so many demands for another week? I admit, I had a moment of panic and called Nate ask him to come out here to help… and then after I hung up the reality set in that we couldn’t afford it and he had to preach on Sunday anyway. So I called him back and left him a message telling him that we were going to do it and he didn’t need to come. Unbeknownst to me, he was on the phone trying to call Miracle flights, Angel flights, etc… and he figured out he couldn’t get a flight because he didn’t have A with him.
I knew that the Lord would help me to stay sane somehow while dealing with everyone, and I just prayed He would send me help somehow… and He did! My friends here graciously offered to keep an eye on the younger two while A was in PACU so I could be with her, but my heart was heavy because I had told her after her last surgery that she wouldn’t have to stay overnight alone at the hospital… and she was going to have to do that once again. Little did I know that at the same time I was asking the Lord to give her strength and understanding, a wonderful family from our church was offering to fly Nate out to be with us. Everyone at our church was supportive and one of the other pastors even offered to preach even though he was just returning from vacation the day before… it is overwhelming to feel such love. Nate’s mom was able to come down and stay with the other children (who are busy with t-ball/softball and music lessons), and he arrived on Wednesday afternoon! I kept it a surprise from the children because I knew that they were so homesick and needed something to cheer them up. You should have seen them jumping up and down when they realized it was Nate that I was hugging at the airport… they had no clue!!! You couldn’t wipe the smile off of any of our faces for the rest of the evening! Alexandra was beaming!!! We walked around Old City and took our special friends from Poland (fellow RMH family) to the zoo on Thursday… the Ronald McDonald House had just gotten some passes and they knew we were trying to keep Alexandra’s mind off of her surgery, so what a blessing that was!
On Friday, despite the surgery being delayed by several hours, Alexandra hopped right up onto the operating table without trepidation, and she woke up smiling with her arm turned inward and bent at 90 degrees! Dr. Z was absolutely thrilled with how her surgery went- she is the oldest child he has ever performed the surgery on, and she surpassed his expectations! She went from passive bending at her elbow (from straight arm postion) to 40 degrees to touching her nose in the OR!!! Thank you Lord!!! This is going to help her use both hands/arms so much more effectively. He will do more tweaking to her hands after we see how she functions with her arm in this position.
Our OT, Cheryl, did an evaluation pre-op to see how Alexandra would have to change methods for activities of daily living after the surgery, and she said it might take awhile for A to come up with things that work. Well, the day she was discharged she decided she wanted to get up into her wheelchair from the ground without help and not using her left arm… and she did it! This girl is inventive and knows her body well!!! We are so proud of her!!!
We are now doing more casts and then going home on Tuesday. A has been fit for her KAFO’s and AFO’s, but Dr. VB wants her to continue to cast to bring her heel down the rest of the way, and hopefully by the time the braces are done (4-6 weeks) she will be done with casts. Which is wonderful because we want to get her swimming to improve her muscles! And, she misses baths!!! We will be back in 2 weeks for Dr. Z to take off her arm bandages and for more casts (we’ll probably stay a week and do 3 sets again).
For those of you who are following in our footsteps, or those who wonder what doing all of this traveling is like… let me assure you, it is no vacation. It is hard work. It reminds me a lot of our time in Ukraine. The stress never stops- whether it’s dealing with a child in intense pain, traffic after a 12 hour journey, rude people who ignore you and your child and let the door close in your face rather than holding it for you, or the constant, overwhelming homesickness… the enemy knows your weaknesses and will use those to hurt you. But take heart!!! God is faithful- He has provided us with beacons of light in these journeys, and we just stay focused on bringing glory to Him through all of this. We have been shown overwhelming kindnesses by our friends at Shriner’s, the RMH, and the believers over at Tenth Presbyterian Church.
Honestly, it would be easy to say that I don’t like being here. The people (in general) in Philly are much more self centered than they are in Indiana… there is a lot less kindness when we are out and about in the city… but that doesn’t change the fact that they need Christ just as much as we do! We try to be an example for Him everywhere we go, and we use our discomfort to help us look forward to going home soon. So, I don’t hate it… Philly will always have a special place in my heart because of the “helpers” here (to quote Mr. Rogers) who helped my daughter to walk!!! ETA: I do NOT mean that everyone in Philly is self-centered!!! Obviously, all of the people that I have listed in this post are amazing and selfless! I just mean that there is a difference when we are out and about here versus when we go out in Indiana. I’ve had people actually run ahead of us (back home) so they can get the door for us, whereas here people will stare and not smile and they will cut Alexandra off in her wheelchair with their carts. So maybe it’s just the defensive mama bear in me coming out in that comment!
I’ll leave you with some photos… we were able to go to another Phillies game with the RMH- and this time they took us in a stretch Hummer!