Making Rounds

Macayla gets to see most of her doctors this week. She has been to neurology, the surgeon’s office, genetics, and nutrition. She has started baclofen for stiffness and rigidity. Dressing Macayla can be like dressing Pinocchio while some of his joints glued into a position. You may get the shoulder to rotate, but the elbow is frozen at a 60 degree angle. You may get the elbow to move, but the shoulder won’t relax. It’s different every time. This medication is supposed to help with that. I hope it helps her relax. She went to the surgeon’s office to have the valve on her feeding tube replaced, again. We had it replaced at the end of February because the first one started leaking slowly. The new valve began leaking almost immediately and worse than the first one. We finally got this second valve replaced Monday and today, it started leaking! All of this is happening in the midst of these valves being on constant backorder. I’ve had a few conversations with the manufacture, Bard and I am waiting on an answer as to what can be done. It defeats the purpose if all of the formula we put in her stomach comes right back out when we disconnect her feeding pump. Not too good! So, Mac makes her rounds this week. She’s a girl on the move.

Frustrating!

Macayla has not been sleeping very well for the last two weeks. This week was worse than last. For three nights in a row, she has stayed awake until around 1 a.m. and then wakes up a couple of times before sunrise and either gets out of the bed or tries to. This is dangerous for her and so we end up sleeping in her bed to keep her safe. Macayla’s crawling has become labored and she falls 90% of the time from the crawling position. Then on Tuesday night, Jacob couldn’t sleep because of an ear infection. So, Jennifer and I were swapping children throughout the night trying to get them to sleep. It gets quite frustrating. I get frustrated with the kids, but they can’t help it so I get frustrated with myself for being frustrated at them. At 1:30 in the morning, when you are frustrated about your frustration, you suddenly find yourself thinking about how much you really want to be at the beach. Alone. For a month. But then you feel guilty for wanting to just throw your hands up and run away from your family. This guilt, of course, is frustrating. But in reality, it is mainly because of sleep depravation that there is so much frustration. After a good 4 hours of semi-solid sleep, the world is bright, new and full of possibility! Oh, wait, that’s only after 4 hours of semi-solid sleep and half a pot of coffee. Then the world is bright, new and full of possibility!
But in spite of a few sleeping issues, things have been good. Macayla has been doing well. She has a great nurse that comes two days a week. (We wish it could be more.) Her sight and memory are holding on, though they are challenged. We went to Charleston this past weekend and it was a good trip down memory lane for Jennifer and I, as that is where we met and dated. Jacob enjoyed seeing the Citadel. The barracks looked like castles to him, but they were kind of lame because they didn’t have any fire-breathing dragons in them. We got to swim with the kids and play in Charleston with Jennifer’s parents, grandparents, aunt and uncle and her cousin who is finishing up his senior year at the Citadel. It was fun. But still, part of me is still longing for a beach trip with the four “S’s”: sun, sand, surf and sleep. Make that five “S’s”: sun, sand, surf, sleep and sleep.

Blessings Continued

I have a friend who is on staff at a church. He struggles sometimes because it is such a thankless job and after a while that can get to almost anyone. Beyond it being thankless, it is lonely and often most of his efforts are supported only by words, if that. Recently, he was venting to me and I have to admit that instead of reminding him of all the positive things he has told me about his church before, I encouraged his negative take on things. It was only later that I realized how thankless I had been, not only in my approach to his struggles, but also in my approach to our struggle. We have much to be thankful for. Granted, our daughter is dying. But God has placed so many people in our lives and provided for our needs in amazing ways in response to this situation. Jennifer Neary is our “Early Interventionist” from the Department of Disabilities and Special Needs (SCDDSN) and she always goes above and beyond what it takes to provide Macayla with services and resources. She’s not in it for the money, that’s for sure! She’s here because she actually cares for Macayla and us. If you are a special needs family and are not involved with your local disability board, I would check it out. We have been blessed by multiple church families in Anderson and Greenville who have been praying for us, providing meals, and even services around the home. We have neighbors who look out for us, our home, and even our yard! Our family has provided support and love by caring for Macayla and us. My wife’s parents take care of the kids for us once a week so that we can get some sleep or have a date night. Sometimes they or my mom may come over and watch the kids or just do the dishes and laundry because I’m too busy with the kids to get that done. We have received financial support. My dad and step-mom have helped out with building a wheelchair ramp in our garage. I can’t imagine going through what we are without family and friends to help us out. I know that there are some people in the world who go through it alone. Further, I can’t imagine going through what we are without Christ. His presence is real and He is an ever present help. Sometimes He let’s us know his presence in our quiet moments of solitude, and sometimes He let’s us know His presence while family or friends are doing laundry, providing meals or taking care of Macayla. Through all of this, there is so much to be thankful for. It is easy to get caught in the negative. To be sure the bad things that are happening to Macayla are real and they will not simply vanish with positive thinking. But dwelling on those things can blind us to the very real blessings that we experience everyday. Thank you to my “church-staff” friend for reminding me of that. We are God’s workmanship, created in Christ Jesus for good works, which He prepared in advance so that we could walk in them. Thank you to so many who are walking in those good works!

Blessings

Friday afternoon, we drove to Spartanburg, SC to pick up our van. It spent the week there having a wheelchair lift installed. It was installed in the back doors of the van and allows Macayla to roll up behind the driver seat and she and Jacob can sit next to each other since he has the seat on the passenger side. This means she can safely ride in the van while sitting in her wheelchair which is much more comfortable than the car seat we were using. The lift was installed by the folks at Classic Coach Mobility and we can’t say enough about what a great experience it was dealing with them. Joe West was our contact there and he took as much time as it took to educate us and work through all of the nuances of selecting a lift that fits with our daily lives. Everything Joe said would be done was done just the way he said it would be. We walked away with every expectation met or exceeded. It was a joy dealing with him. Jacob even is beginning to learn how to use it and he likes to use the buttons and lift Macayla into the van.
Things have been stressful lately and we have been struggling emotionally and spiritually. But as this has happened, God’s people have been coming to us from all directions with unexpected blessings: some with words of hope or encouragement; others with acts of service; many with prayer and cards and emails. The van was only possible because Macayla was granted a slot in the Medicaid Waiver program that would pay for it. Above that blessing, we were blessed to work with Joe and Classic Coach to have the lift installed. We could have ended up with anyone installing our lift, but we ended up with him. We have had friends showing up to provide acts of service around our home and items that we can use. I have been encouraged by the prayers of others, and because of those prayers I have been able to pray more. We have met folks through emails or phone calls that are in similar struggles and we would have never met them if our situation wasn’t what it is. In the midst of an emotional and spiritual slump, God has moved people in big ways to remind us that He is with us. It is truly blessings upon blessings and grace upon grace.

Nursing

We have been trying to get a home-health nurse in place since October and it has been a struggle. There is a nursing shortage everywhere and maybe more so in home health. But yesterday, after more than a month without a nurse, we had someone assigned to us. The nurse we met will only be part time and will be with us two days a week. She has a background in pediatric ER and it was clear in just the short time she was here that she is very sweet and attentive. We are excited that we may be able to get nursing off the ground for Macayla. It will help us out a ton. We are also excited today, because we are hoping to pick up our van after it has had a wheelchair lift installed. We are waiting for confirmation that it will be ready. Jacob is excited about it as well. He was a bit concerned about leaving our van with someone else. He said, “I hope they are being nice to our van and taking good care of it.”
As far as Macayla goes, she has been showing some weakness in her torso and arms that makes it more difficult for her to crawl and she even slumped over in her chair for a while the other day. But she has been able to hold herself upright since then. Her sleep has been good for the most part. She struggles some at first to fall asleep around 9:00 to 9:30 and then wakes up around 4:00-4:30 after which she may sleep until 6:30-7:30 if we let her. This is a much better sleep schedule than what she has been on in recent months. She has been quite expressive with me lately and lets me know that she doesn’t like diaper changing. That may be from the not so fun time with diapers this past weekend as we combated constipation. She hasn’t suffered much constipation since we went completely to formula, but now it seems to be starting again as she has had it twice in about a month. She also has started calling out almost constantly. It sounds like a siren sometimes or yelling. She seems to do it regardless if she is happy or sad. She stops is she sees something that is interesting or when she is sleeping. Other than that it seems to go on most of the time. It can definitely wear you down. Overall, things seem to be going well for now and we hope that we can continue on that part of the journey.

Should I Get a Senior-Citizen Discount?

Last summer, I had a strange pain in my right foot. I felt like I strained it and it hurt for a few days and then disappeared (the pain, that is; I still have my foot). Over the Fall, I noticed it a couple of times, but it was annoying at best. This past Friday, it started hurting again. I ignored it until Friday afternoon when it started to hurt more than ever. By Sunday, I was hobbling around and couldn’t drive a car. My foot was swelling and bruising and I was wishing that it would disappear (the foot that is). The short story is that I went to the doctor on Monday and found out I have gout. Gout! I thought gout was one of those made up words the old people in my family used to describe mysterious pain in their joints. I did not know that it was a diagnosable condition. The doctor admitted that I was not the classic gout patient, since they tend to be older or heavier, but I have it nonetheless. It is clearing up thanks to some steroids and anti-inflammatory medication along with another medication that helps metabolize the uric acid that causes the problem. For reasons I won’t write of here, that last medication is no fun. But I have several “loved ones” that have not allowed this opportunity to escape without much humor at my expense! My wife is leading the pack in this arena! So, to head some of that off, just know that I am a man you could describe as advanced or ahead of my time. Now if I could just get some of the senior-citizen discounts and benefits to go with it.

Be sure to check out Jacob’s World and Macayla Smiles. There is some new content. We have included a few of Macayla’s MRI slides for comparison on her page. New pictures will be coming soon on the Image Gallery page, so stay tuned.