Monday, May 16, 2016

Jellybean on Wheels

 Now is a good time to share something different. It will be the perfect distraction for me and maybe helpful to someone. 

 Jellybean turned two not long ago and I had been feeling a little sad that he was stuck wherever we set him. When he gets bored with the toys around him, he just zones out. 

 Toddlers should not zone out. They should be into everything and running you ragged as you chant "no" all day. 

 Jellybean is still working on learning to sit up by himself so we sit him up or put him on his tummy and there he is until you finish what you are doing. 

 I don't like it but sometimes I do need to clean or use the phone or fold laundry or cook. So I headed to Google and special needs forums to try to glean some idea of how to remedy this situation. That is when I came across the Bumbo wheelchair. Get on Youtube, search it, and prepare to be amazed. 

 Doubt lingered that it would work since he has trouble coordinating his arms and hands  and has weak muscle tone but I had to try. 

 I found a supply list but no instructions. Maybe people are afraid of liability issues so let me preface this by saying that if you use any information here you accept full responsibility for the outcome and/or any injury. This chair is not perfect and could probably be tweaked to be better but I am not a professional builder or professional anything, just a dorky stay-at-home wife. Having said that...

 Here is our homemade baby wheelchair: 
(Photoshopped helmet to protect his identity...sorry, he is super adorable)
  As you can see, we did not use the Bumbo seat. The seat we used has a deeper seat, a removable insert, and a handy tray. Of course, almost everything was purchased on Amazon since we do not get out much. I will provide links to the items we used. I bought the nuts, bolts, washers, and brackets at the local hardware store so I could be sure it was what I needed. 

 On Youtube, they build the wheelchair and within minutes, the toddler is zooming all around. That was not our experience at all. 

 We spent weeks with backaches from bending over to make him use his hands and move the wheels. Each time we made him push, we said, "big push." We did not use it everyday and if he did not want to sit in it, we did not make him. It was a long, slow process. We were about to give up. 

 And then...

 one day he was playing at his activity table and he realized that he could lean and pick things up off  the floor. He started dropping toys on the floor and picking them up. One toy bounced out of reach and he put both hands on one wheel and pushed. 

 Oh, the look on his face! That is when possibilities came open. At first, we had to put his hands on the wheels and tell him to push but he could do it without our help. He had trouble getting his hands back on the wheels. 

 And then...

 not too long ago, he did it on his own. We just had to tell him to push but now he can push without prompts. It is slow and hard work and he does get distracted but I cannot tell you how excited I was when, on his own accord, he pushed 2 feet to get to the coffee table and pulled off the laundry I had just folded. It was AWESOME! Our therapists are amazed, too.

 Now we are working on teaching him prompts for learning to turn. We say, "left push" or "right push" and we still use "big push" for using both hands to go forward.

 Does this mean he won't walk? No. Who knows if he will walk one day. We are working on what he can do right now. This wheelchair means that he has freedom to explore, develop, and be part of life in a way that he could not before at his level.

 His brain is opening up to new ideas and thoughts. He is turning into a toddler right before our eyes and all because he can do something all on his own. God has made our bodies adapt in such amazing ways. What a blessing to watch!

 If you have a little one with developmental delays, consider trying to put one together. Here is what we used:
- (1) Seat  (be sure to keep the safety belt attached. Even though our wheelchair does not tip forward, it sits angled forward and if he leans forward, he can tip out so buckle up for safety. The tray is handy, too)
-(1) Base (we cut this into a u-shape because it makes it easier for him to maneuver closer to toys and the wheels attach better closer to the seat. You do want to be careful not to get the wheels so close to the seat that little fingers can get caught)
- (1) Back Wheels (This is a 4 pack. I like the 5 inch wheels for the back. I tried 3 inch but it was awkward. I did use a smaller 2 inch caster in the front)
- (2) Side Wheels 
-(1) Axles (this is a 2 pack and I used one for each wheel to be sure that each wheel could roll independently so you can turn on a dime. There is a pic below that shows how they are attached under the seat. They are at an angle so the wheels are slightly angled out)

 We put the seat about 5 inches from the back of the base. At first we just cut out sections for the wheels so they could sit close to the seat but then we realized that it was better to round out the front so he could get closer to his toys. 
(bottom, you can see our updated u-shape and where we put the wheels)


 On the side of the chair are two arches that look like they are waiting  for wheels. I measured up from the bottom about 3 inches right in the middle of each arch and drilled a half inch hole. 

 Under the seat, I measured about 2 inches down from those holes and drilled half inch holes so that the wheels would sit at an angle. These holes do not go all the way through to outside of the seat. As you can see from the picture, I did some pretty ugly gluing with Liquid Nails to keep the axle in place but I need to redo it because it is not holding it in place. 
(Axles crossing each other and sitting at an angle under seat)
 Put the axles in place before you attach to the base. It will be a lot easier. To attach the chair to the base, I used L-shaped brackets bolted into the base and the seat as you can see from the following picture. 
(L-brackets, 2 in back and there is 1 in front)


  Once you attach the seat to the base, you can add the wheels on the bottom. The side wheels have 2 washers between them and the seat to keep them spaced far enough from the seat to give enough room for fingers. Then you just add a nut to hold them in place. 
(Front with updated u-shape and no insert. The front wheel is bolted into the bracket)
 At times, we do have to tighten everything up. The whole thing cost about $120 which is a steal compared to $700-900 for a chair like this. We are getting measured for a regular wheelchair but this one will still be our playing chair because he is at the same level as friends and it makes toys more accessible. Let me know if you make your own and remember, don't give up if your little one does not get it right away. It is worth the effort. 

Thursday, May 12, 2016

Answer-less Questions

Have you ever felt like you were trudging through a valley weary with burdens, feet heavy with exhaustion, heart heavier with emotion, and no one close by? 

 I think a lot of people would answer "yes." Some days it may feel like you cannot go one more inch and you want to give up. I get it. 

 Maybe you are having one of those days where you cry every moment you are not in public. Your eyes are permanently puffy and your nose is swollen. I understand. 

 Sometimes in life we get to the answer-less questions. Things are tough, real tough and we want to know why but there is no answer - at least not at the moment. 

 The one thing I NEVER wanted to be was a whiner with constant complaints, grumblings, and pain. Personally, I prefer to hide away until I can get myself together but as a Christian, I constantly fight against that urge because it is wrong. Yes, it is wrong to infinitely whine, too, but there is a balance between the two. 

 God gave me a little insight this week whilst at one of Jellybean's appointments. We were at the neurologist hoping for some insight or at least some official diagnosis to put in his record to help the system label him. Apparently, they need a label to know how to better work his case. Alas, insight and diagnosis did not come. The neurologist said, "I have no answer as to why he can't walk or talk. Everything I have shows that he should." 

 Jellybean's development is an answer-less question. Not to say that I am giving up. We will see a geneticist but not for many months. Before then we push and I encourage anyone involved with him to push. 

 My own life is so very full of answer-less questions right now and my response has been to hide. In this moment with Jellybean, God enlightened me. Why would I give up here but fight in that moment? Why indeed. It has a lot to do with my feelings about myself but God reminded me that no one is worthy, no one measures up. BUT, HE has purpose for those HE predestines. We have much to do wherever HE has put us, whether in valleys or on mountaintops. 

 If life is hard, we endure. If there is hurt, we persevere. If there is disappointment, we have hope. 

 At the moment our questions may not have answers but there is one solid guarantee in this world. There IS an answer that needs no question -JESUS. HE covers it all. 

 "The LORD is my portion..."
- Lamentations 3:24

Monday, April 18, 2016

A Lion Sanctuary

  After a spending most of the day with a terrible headache and feeling nauseous, I headed off to bed as soon as I got Jellybean's feeding pump set up for the night. It did not take long for sleep to take over but too quickly it disappeared. At a quarter to one, I jolted awake because of my dream. This same dream pops up and disturbs my sleep on occasion.

 There I am living my life doing ordinary things - laundry, cooking, yardwork. So far it sounds kind of boring for a dream, huh? Things change though and it gets a lot more frightening. Lions, ravenous and angry, are stalking me. At first, I find ways to hide but eventually, they find ways to get at me. Before I awoke this time, I was in a car with my husband when we were being pursued all around by several lions. 

  It sounds silly but it is beyond terrifying and I am still awake over an hour later with 1 Peter 5:8 running through my head. 
 "Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour."

 This verse has been one that I have studied a lot. Even in these wee hours of morning I find myself pulling up sermons and commentaries. In the beginning of my walk with Christ, I had lots of struggles with wanting to be in control and protect myself. The church I was attending only strengthened my resolve that this was necessary. When we finally left I was of the mindset that there was no one in church that you could be close to and that it was very necessary to keep at a distance. This is how I had lived my live before Christ, too, hiding myself away so I could not be hurt. 

 I am not sure how I thought that meshed with God's Word but it is what I felt. A few years later, Truth started to chip away at the walls I had built and God moved to put me in situations that showed me clearly what a contradiction to His Truth was my thinking. 

  Oddly (or should I say providentially), I just recently found an old journal where I wrote what I entitled, "The Lion Sanctuary" based from 1 Peter 5:8 likening what I was doing to fencing in a yard that has a few lions in it. I discussed how I had spent years putting up walls to keep myself safe only to shockingly realize that I had enclosed myself with something much more dangerous. 

 After reading through 1 Peter 5 tonight and reading sermons on it. One message hit me. You cannot be a lone Christian. God did not design us that way. Look at the pictures He paints of Christianity: a body, a flock. All denote that multiple members are involved. Sadly though I find myself with planks and a hammer in hand today.

 Why would I repeat such a foolish thing?

 The scariest thing in this world is being a sheep without a flock. As a matter of a fact, I am not sure that it is even possible to be one technically. 

 Is this the struggle I will have to wrestle with in my time here on earth? Just yuk! Blaah! Thinking about it makes me sick to my stomach and at the moment, God has not given me a clear answer so I must continue where I am holding fast to Truth and obedience and refusing to give anything to the efforts of building a lion sanctuary. 

 Let me encourage you as well to not hide yourself away. Even if you are feeling hurt by those in your church, it is much better to wrestle with resolving the issues than shutting yourself off. God knows the hidden places of the heart and those lions are not looking to snuggle with you.