Changes

First, thank you so very much to all who have been helping us with meals and providing help with the children. Also, thank you for all the prayers on our behalf. We have had two nights of awesome sleep, and then some nights of iffy sleep,  but better than before, so thank you very much for praying for that on our behalf.

Second, I have been wanting to post about the changes we see in Daniel since his surgery. He is very weak, and it is discouraging to see him struggle so, but we know this is a marathon, not a sprint and we will persevere. However, there are some cool changes we have seen already and those are encouraging. You may remember this sweet picture of Daniel napping while still in the hospital. See how his fingers are laced together? He was never able to do this before because the fingers on his left hand were too tightly fisted.  I have seen him sleep this way a time or two since we’ve been home and it warms my heart. That he can do this himself as he is falling off to sleep is very exciting for us.

The muscles inside Daniel’s mouth have been challenging for him since he was born, and contributed to a lot of feeding struggles early in his life. More recently this has made it really hard to brush his teeth, because his tongue has always reflexively pushed out against the toothbrush. Since the surgery we have experienced less of this and are able to brush with less struggle. Hip hip hooray! Wasn’t expecting that little benefit!

After we were able to get Daniel up a few days after the surgery I noticed immediately that the appearance of his legs had changed. Even though he was in his wheelchair his legs looked like normal little boy legs! Because of the spasticity in his muscles, his legs always looked thin and tight. To see him up that first day with legs that looked like the relaxed legs of any other six year old was very touching.  It is a lot easier to help him get dressed without the spasticity fighting against us. He doesn’t have to deal with his feet shooting outward while he sits in his wheelchair either. It used to be that whenever he got excited about something or was working hard on something with his hands, his legs would tighten up and push out straight. That doesn’t happen anymore.

Another biggie that we have noticed is that the nighttime grinding of his teeth is almost completely gone. The tightness and muscle cramping in his legs at night have been painful for him for years and we would hear hard grinding of his teeth nightly. The week before his surgery we actually had an emergency trip to the dentist because he has a chipped tooth. The dentist attributed the chip to all the grinding Daniel does in his sleep. This tooth still needs to be taken care of, but we are not hearing the grinding from Daniel’s room any more while he sleeps. What a blessing for him to not have that particular pain any more. He is still uncomfortable from the surgery, but I am excited for him that once he is fully healed he will be able to sleep peacefully. What good news!

He has had physical therapy appointments almost every day since the surgery, and he is working hard. He is also experiencing frustration, weakness and pain as he goes through these appointments and has had some problematic behavior during some of these sessions. Please pray for him about this. Long term benefit doesn’t mean much to a six year old who is struggling and in pain, so finding motivation to do the work in the moment is something his therapist and I are working hard to discover. It can change with the day. We are using charts and goals and prizes and whatever else we can think of, but this is an especially challenging part of the recovery. I have to keep reminding myself that it has only been two weeks, and of course he is uncomfortable and it is so, so hard to do this work. I am sure when we have a few more weeks under our belts he will begin to be encouraged by his newfound strength and I am hoping this will in itself become good motivation.

We have been getting him in the swimming pool every afternoon this week as a second therapy session. He really enjoys this and I know the movement of his legs in the water is excellent for his muscle building. We have seen great improvement in his moving in the water just since Monday. Yesterday he wanted to “jump” in off the side (sitting on the edge and basically leaning forward until he falls in) over and over and over, just laughing each time and saying “I want to do it again!” I’m glad that this form of therapy is more free-form and much more fun for him.

Our whole family continues to feel stretched and overwhelmed by our situation, but it does help to focus on the positive changes we see in Daniel and that as we get further and further from the surgery date things will improve more and more. We are so grateful for your support and encouragement, and gifts and cards. Thank you! Thank you!