Whenever Joyanna sees these kinds of pictures of Philip she says, "Philip happy". It doesn't happen all the time but we are thankful for the times he is happy. | Even Ethan gets in on the action of helping Philip. Not exactly normal for a 16 month old to help his big brother drink, but even he does what he can to help! Nap-time for Joyanna! |
This is Ben. Recently, I spoke with someone about a blessing that God had given to our family, and thought it may be a blessing to those that read this blog to hear a few of the ways that God has taken care of us. It also will help us remember in the future how God has been faithful
Several years ago when we bought our Ford Taurus, we intentionally bought a bigger car. Even though we only had Philip at that time, we knew that we may need the space for several car seats before we would be able to save up money for a larger vehicle. It worked fine for a few years, but as we added Joyanna and Ethan to our family, having the 3 car seats in the back was getting to be more of a challenge. Last year, as we continually saw Philip going downhill, we began realizing that we would probably be physically picking him up and putting him in the car for a good while, almost “dead weight” at times; and we began to realize that, though it was working with the car, we needed to pray about a van. Practically, because it would become more difficult physically for Becca and I to avoid hurting our backs lifting Philip sideways into a low vehicle, but also because he would need a wheelchair at some point and there wasn’t space in the car trunk for a wheelchair. A van was becoming a need, but God already had plans for that. It had not crossed our minds that we may be receiving some inheritance money from my grandmother, who had passed away earlier in the year. But, the amount we received was sufficient to buy a van. Numerous times since we have gotten the van we have realized what a blessing and help it has been. For example, at Christmas-time when we traveled to KY, Becca climbed multiple times from the front seat to the back of the van to take care of Philip, who threw up a lot that night while we traveled. It would have been an impossible trip, without the extra space in the back of the van for Becca to help him and keep him from choking. Earlier this year, Philip had to get a specially adapted car seat for special needs children, it wouldn’t have fit in the Taurus if we had tried. He also got an adaptive stroller that wouldn’t fit in a car’s trunk. God knew all these things before they happened. Our heat/air unit in our house has been going out for a while now (6 years ago the repairman told me we needed a new unit). For several reasons we needed to put in an entirely new system, rather than just replace the unit itself. That included new duct-work, adding duct-work to a room in the house that had no heat/air vents, moving the location of the unit, etc. One estimate I got from a reputable company estimated the total cost at nearly $11,000. That’s a lot of money! However, through a pastor who was willing to be a blessing to us, through a grant from the Isaiah Stone Foundation, and through a rebate from our Oklahoma natural gas company we were able to have the system replaced this week with a cost to us of only around $1800. A main reason we are changing the system completely is to make room to expand our bathroom in the next year or two to be more handicap friendly. As Philip gets bigger, bath time is only going to be more challenging. Only God can work some of these types of situations out! It is certainly going to be a blessing and help to us not to deal with the heat or air system breaking down a couple times a year. While talking about blessings, I have heard Bro. Dave Hardy on several occasions make the statement “When it comes to friends, I am the richest man in the world,” I want to borrow that thought from him. As we have gone through the last 5 years with Philip and the last few weeks with concerns about Joyanna, I can’t help but reflect on the friends that God has given us. I would almost want to challenge Bro. Hardy and say that we are “richer” than him: The parents and families God has given Becca and I The church that we attend, and the love and encouragement that has been showed us from the people there Working at Heartland and the attitude, flexibility, encouragement, and help from the staff and students The doctors The therapists The school teachers All those that have helped with babysitting for the many doctors’ appointments, as well as other times that have allowed Becca and I to get away for a little bit Those that have stopped and interacted with Philip and given him high-fives whether he has been happy or sad, smiling or grumpy, interactive or mostly unresponsive Those that have helped us financially, emotionally, physically, spiritually, and those who have encouraged us in both the bad times and in the good times (even during the good times, there is usually something going on under the surface, whether we have said something about it or not) Those that have sent us texts, cards, emails, etc. The people, that we don't even know, that are praying for our family in churches around the country. It seems to us that God has given us a lot of things materially, and make no mistake, those things have helped to make our lives easier and taken a lot of the concerns and stresses of “normal” life off of us while we deal with the concerns and stresses of an “abnormal” life. However, when we look at our lives, the 'thing' of perhaps the greatest value that God has given us is the friends and family He has brought into our lives. Ben filled you in on our recent doctor’s appointments but we realized when we didn’t post for a while, there was some information missing on how Philip is actually doing these days.
No More Food Scales We mentioned that we were planning to stop the diet but Philip’s last day on the diet was June 2. That day we took the whole family to McDonald’s (courtesy of Poppa and the gift card he sent in the mail!) and Philip had fries for the first time in 10 months. He did enjoy them! We were still trying to ease him back into a regular diet at that time so he also had the cheeseburger without the bun and some yogurt. We specifically went to a restaurant with a playplace and Joyanna and Ethan had fun climbing and playing…oh, and daddy, too! J Since the diet has been finished, I’ve found things that I had forgotten that Philip liked so much—regular milk, casseroles, stews, cottage cheese, yogurt, crackers, and lots of fruit. He has enjoyed all of those. The first week he was off the diet, we didn’t really know what to expect. Our first thought was that he would decline a little quicker, since the diet did help him a little bit in July of last year. However, the first week was a great week. He was happier and seemed more content. Maybe eating some of those things and just eating more in general helped him to feel better. The second week was a typical down week, then the third week was the craziest week our family has had in quite a while so it was impossible to evaluate poor Philip with all the craziness happening around him. We had our HVAC replaced so we were living with my sister-in-law and her husband for a couple of days. Philip had 4 appointments and it was Vacation Bible School at our church. I did not take the two boys but Ben drove a bus for the week and Joyanna went with him almost every day. Everything was a little helter skelter and you could sense the wear it was on Philip. However, once Friday came, appointments and VBS were over and we had been back home for a couple of days, you could see Philip begin to relax and get more sleep so he felt better. Yesterday and today have been okay days. I think we’ve mentioned in the past, maybe even before the diagnosis, that the best way to describe Philip’s progression is the highs get a little lower and therefore, the lows get a little lower. I think that’s continuing to describe his days. What Are The Days Like? Philip can still sit up some on the couch on good days, although he leans over on a pillow to rest quite a bit more. He can still see a little bit, at least enough to find his toys in front of him. He can grasp those toys and therefore is able to play a little. He has his favorites--a wooden toy mallet with a cylindrical handle he can hold easily, a plastic snake, a rain stick that has beads that fall and make noise, his duck that his teacher made for him, a Little Tikes hammer that bangs and boings, and every few days or so he takes a renewed liking to the flag his Full Circle Family gave to him. What makes him smile or laugh? The flag from Mrs. Lisa that plays patriotic songs, saying ‘Boing’ and other sound effects that are similar, certain songs, when the bee gets him (I tickle his belly and say, ‘bzzzz’), Daddy sticking his head into Philip’s belly and getting him. There are two that almost always make him smile. Spinning has always been his favorite and still is. It’s a little hard to accomplish these days. The only way right now is for me to hold him in my lap in the computer chair but that’s only as long as Mommy can take the spinning. Philip would love to go longer. The other is true testament that he’s a boy—bodily noises. Whether it be a can of flarp (noise putty) or a whoopee cushion, it can usually get a smile if not a downright giggle out of him. NCL is known for causing sleep troubles. I don’t know everything about the why of that yet but we’re seeing the signs. Philip seems to be waking more at night although sometimes he is quiet so he doesn’t wake me. He still naps mid-day after lunch and seems tired at different times throughout the day. He is drooling more and his ability to chew and swallow can fluctuate with the day or even time of day. His seizures have increased a little I would say since we’ve gone off the diet but we anticipated that some. Please pray for us that we would make wise medication decisions that will be in his best interest. It’s hard to know whether to medicate more or less and which will help him feel better without a lot of trial and error. God can guide us in those choices we know and we are trusting He will show us along the way. I pray daily for God’s grace for Philip. I feel there is so much I can’t do for him, especially when he is upset. I try all I know to do and then just pray that God will take care of the rest. Recently, God has answered that prayer several times by calming Philip when I haven’t known what to do. I remind myself often that God loves Philip even more than I do and is capable of taking care of his every need. He is doing the same for us. Oh, and of course, words can’t express my relief about Joyanna. I feel like God has given me a gift. Then, it reminds me how God has given me so many gifts, not only my children (all three of them) but so much more. I couldn’t write it all here so I won’t try. Thank you, LORD! Good News |
Philip & Joyanna's Story
December 17, 2009 -
August 25, 2018 Philip's memorial slideshow and funeral service can be viewed by clicking on the "Philip" tab at the top of this page. You can read more about Joyanna's story by clicking on the "Joyanna" tab at the top of this page.
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