tag:blogger.com,1999:blog-46791994423291847742024-02-20T02:51:14.281-05:00Uncommon NeedsSharing the comfort by which we have been comforted and the helpful hints by which we have met the uncommon needs of our family.Unknownnoreply@blogger.comBlogger37125tag:blogger.com,1999:blog-4679199442329184774.post-55242605097137133252011-09-06T17:07:00.000-04:002011-09-06T17:07:21.839-04:00Sign Language HelpSign language is not simply for the deaf or mute. Sometimes it augments communication for those whose speech is limited.<br />
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We found that Macayla could use some signs to help communicate for a short time. She learned a version of the sign for "more" and that was helpful, especially when she wanted to play in the water. She would often sign "more" to let us know she did not wish to stop.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFx5fxGPA_1YuGkTTMema4s5qhs5rs_RIwP0u3NCubOPykuD5DGCQcXaQguG-NI251vZ325-81xPEPC-WP0LqTQhUza9sDBmBqDAIHWb5AHwvmt5NiyC5a-TxTItkxf1mF_dLpjryaVCm_/s1600/logo.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFx5fxGPA_1YuGkTTMema4s5qhs5rs_RIwP0u3NCubOPykuD5DGCQcXaQguG-NI251vZ325-81xPEPC-WP0LqTQhUza9sDBmBqDAIHWb5AHwvmt5NiyC5a-TxTItkxf1mF_dLpjryaVCm_/s1600/logo.jpg" /></a><br />
One helpful resource is <a href="http://www.aslpro.com/">ASLPro.com</a>. It is free to use their website and they provide video demonstrations of the signs. They do accept donations to help keep this wonderful resource going.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4679199442329184774.post-87312674364248399732011-06-12T19:59:00.001-04:002011-06-12T20:00:26.091-04:00Transferring and Positioning - Maxi Slide Sheets<span class="Apple-style-span" style="font-size: large;">My wife is a nurse and has been training with a product called Maxi Slide Sheets. They are a really neat product for transferring immobile patients from one bed to another or for just moving a patient up in the bed for repositioning. Here is their </span><a href="http://www.arjo.com/admin/files/20100723162630.pdf"><span class="Apple-style-span" style="font-size: large;">PDF showing the product in use</span></a><span class="Apple-style-span" style="font-size: large;">, however the training video does it more justice.</span><br />
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<span class="Apple-style-span" style="font-size: large;">For us, this would have been great on several occasions as we needed to reposition Macayla for bath (which required that we spin her completely around with her head at the foot of the bed) or to just move her up closer to the head of the bed. Macayla grew to be a very tall and was heavy to move. She was dead weight much of the time and it was not always comfortable for her when we moved her. These sheets would have been great! Unfortunately, I cannot seem to find any American suppliers carrying them on their websites. Several European companies seem to though. Obviously, it is for sale here for hospitals but not the home yet.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Being the inventive sort that I am, I believe a similar product could be made at home. The material is much like that which tents are made of and as a result it is slick. Two sheets are used at once. One sheet on top of the other. As the patient lies on them, the sheet they are on easily slides across the sheet below it on the bed. Maybe with some creative sewing and care, these could be reproduced if you have a tent you are willing to sacrifice! However, I'm not sure how tent material and this material compare in strength, so much caution would need to be taken there. Plus, by the time you factor in the cost of the tent and the nylon strapping and time sewing, it may be worth just ordering the blasted things from somewhere. If I find out who is selling them, I'll update it here.</span><br />
<span class="Apple-style-span" style="font-size: large;">You can also get the product under the person by a process called unravelling without having to roll them from side-to-side (also called "log rolling"). Technically, this "unravelling" technique can be used to get any sheet under a person. I will try to find pictures, video or diagram to show this soon. It is a great technique for many situations.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-11809193586261015602011-05-27T15:23:00.000-04:002011-05-27T15:23:57.006-04:00Research into Lysosomal Storage DisordersThis article was shared and it sounds as if this discovery my offer some direction for future medicines and therapy for diseases such as Battens. The information in the article is credited to Baylor College of Medicine. <a href="http://www.eurekalert.org/pub_releases/2011-05/bcom-mgm052311.php">Click here</a> to read the article.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-22520667921639368922011-05-16T11:14:00.001-04:002011-05-16T11:15:07.225-04:00DNR Stands for "Do Not Resuscitate" not for "Do Not Relay"Recently, I was <a href="http://www2.wspa.com/news/2011/may/13/school-district-considers-policy-over-medical-care-ar-1841302/?referer=http://www.facebook.com/l.php?u=http%3A%2F%2Fbit.ly%2FlrueGH&h=ca0b2&shorturl=http://bit.ly/lrueGH">interviewed</a> by a local news station about school policies concerning children with DNR's. Macayla had a DNR while she was going to school. From my understanding at the time of interview, the school district wanted a policy in place that did not allow them to enforce or enact the DNR during a crisis requiring life-saving measures. In other words, they would perform life saving measures until EMS or other medical professional arrived. I later learned that the real story was the school district wanted a policy that they were not responsible if the DNR <i>was not passed on to medical personnel such as EMS</i>. This is another issue entirely.<br />
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When we signed a DNR for our daughter, it was because we knew the prognosis. We knew interventions would not change the ultimate outcome. So we had to decide which interventions to make and which ones we would not make. We certainly did some interventions. Our daughter had a feeding tube and we utilized suction and pulse/oxygen monitoring. I know some may not consider these as "interventions" but that is exactly what they are. Without them, she could have died much earlier. Some children may need oxygen to supplement breathing, some need tracheotomies, others intubation. Each family must decide for themselves what is best and families can change those decisions over time with progressive or dynamic conditions. The DNR gives the option to families to stop interventions if they know it is what's best. Having a DNR does not mandate a family can't intervene, but it gives that option when the situation warrants it.<br />
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The fact is, at least in our area, neither the school district nor EMS will honor the DNR if life saving measures are called for on someone under 18. In our situation, I would have preferred that to allow me time to get to our daughter and assess her. What may look like "the end" to someone else could have been a "normal" or reoccurring issue with our daughter that can be managed. But we knew better than anyone else what that looked like. So, if EMS beat me there, I had no problem with them implementing life-saving measures. We wanted to make sure that we had the option, legally, to not intervene when our daughter reached a point where the interventions did not give her quality of life. Remember, her prognosis was fatal. Interventions would not change that and we wanted to avoid, if possible, the intubate/extubate roller-coaster. Again, I'm not saying it is wrong to intubate or intervene. We just wanted options. We wanted to be aware and assess if interventions were going to be more for Macayla's benefit or ours. I also believe there is no ethical difference <b>in a situation like ours </b>between withholding interventions and removing them later once the "hospice" process began.<br />
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With all this said, I believe the school district and EMS should be required to relay the information that a DNR is in place even if they do not enact it. The hospital needs to know it. It is pertinent medical information just like allergies, medications, and diagnosis. I believe the school district cannot excuse themselves from passing on this information and really there is no reason for it to be an issue, especially in our area. The number of children who are attending school with a DNR is such a small percentage that there really is no logistical challenge with keeping up with this record just as they keep up with medications and doses. I also suggest that parents keep a copy of the DNR with the child's go bag or wheelchair. The DNR can speak if the parent is unable to due to injury or death. Also, if something happened to us, it communicated our general wishes to grandparents who would take over Macayla's care.<br />
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Again, each family must choose what is right for their situation and child. We were fortunate and did not find ourselves in PICU trying to make these decisions. We were able to be with Macayla at home and be with her. She went to her eternal Home when it was time and we know that even PICU would not have been able to stop that. I pray for all the families facing these impossible choices.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-14240336091033749262011-05-04T16:16:00.000-04:002011-05-04T16:16:03.654-04:00Augmentative Communication for iPad & iPhone<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijYzrx1iEuS3hfN9BCsrbCRQwHXMXjlA2NOjmbiyX7MPVyj7ebrimQvUQlRjtxZgfeZ8ydlUipRuYwPeWGM3uqCbiaEJ07A1P0wfchjL2sL32Xo9_LlBrrPPwTW_p0l5pSiMLHY9urcWEx/s1600/apple_ipad_2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijYzrx1iEuS3hfN9BCsrbCRQwHXMXjlA2NOjmbiyX7MPVyj7ebrimQvUQlRjtxZgfeZ8ydlUipRuYwPeWGM3uqCbiaEJ07A1P0wfchjL2sL32Xo9_LlBrrPPwTW_p0l5pSiMLHY9urcWEx/s200/apple_ipad_2.jpg" width="135" /></a></div>We really wished we had learned more about <b>aug com</b> (augmentative communication) much sooner with Macayla. It would have helped her put some skills in place earlier while she still could. However, it did not make sense for us to have the very expensive computerized aug com systems with touch screens that was out at the time. Amazingly, <a href="http://www.apple.com/ipad/">Apple's iPad</a> and iPhone have revolutionized the availability of this technology at a fraction of the cost.<br />
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iPads have larger and more accessible screens, but iPhones or iPod Touch work for those with the fine motor skills to manipulate items on their screens. (An iPod Touch is just like the iPhone minus the phone capability.) They all have built in cameras. The iPhone and iPad with cellular connectivity have the benefit of not needing a wifi network to access the internet. In other words, you can access the internet anywhere. The iPod needs to be connected to a network wirelessly. For the non-techies out there, this may sound a bit overwhelming, but these devices were designed by Apple to be intuitive and to think like we do. People who have never spent much time on computers figure these things out very quickly. Plus, when they are not in use for aug com, they have all the functions of a laptop. Email, web, word processing, photos, movies, calendar, music, etc.<br />
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Apps for this device can do more than the previous, bulky systems. Apps like <a href="http://itunes.apple.com/us/app/tapspeak-button-plus-for-ipad/id364806507?mt=8">Tap Speak Plus</a> can turn the iPad into a big Mac button. It has the flexibility for users to customize the button's shape and color or turn a picture into the button. No more hauling and storing big, plastic buttons that hold limited sound recordings. You can record whatever you want for it. <a href="http://itunes.apple.com/us/app/my-choice-board/id384435705?mt=8">My Choice Board</a> is another app to communicate choices. It has a small library of images you can use or you can use the camera in the iPad to take a picture of an object and add it to the library. Also you can record sounds or words with the images.<br />
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<a href="http://itunes.apple.com/us/app/big-button-box-hd/id369796382?mt=8">Big Button Box</a> is an app that provides sound effects activated by different big buttons on the screen. The buttons can be rearranged in any order so that the most helpful ones are on the first screen. This is also good as some of the buttons may have sounds not appropriate for all folks. There are cause and effect apps like <a href="http://itunes.apple.com/us/app/do-the-roar/id372464902?mt=8">Shrek Roar</a> that respond to touch and/or sound.<br />
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For a great run down of what's available, go to the <a href="http://www.sc.edu/scatp/">South Carolina Assistive Technology Program</a> website and check out the <a href="http://www.sc.edu/scatp/expo/expo11handouts/Apps%20Galore!.pdf">handout from 2011</a> on these apps. If you download <a href="http://www.apple.com/itunes/download/">iTunes</a> for free onto your computer, you can search right in iTunes itself to find these apps. We have heard from families how well their children have responded to these devices and it is so encouraging.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-86749313040322235072010-08-18T23:04:00.003-04:002010-08-18T23:19:40.557-04:00iPad for Special Needs<div style="text-align: center;"><br /></div>A friend of ours recently got an iPad as a surprise from her husband. I was jealous. However, she posted some photos of her son, Daniel, playing with it. Daniel was born with an encephalocele and is now 12 years old. He has been interacting quite well on the iPad and there seems to be several apps for the iPad geared toward special-needs. <div style="text-align: center;"><br /></div><div>I would recommend checking it out by going <a href="http://www.apple.com/itunes/">to Appl</a><a href="http://www.apple.com/itunes/">e and downloading iTunes</a> for free (if you don't have it already). Once in iTunes, you can search through the AppStore and see all the great options. I found Proloquo2Go and Tap To Talk in the augmentative communication realm. Usually, you can find these apps under the category of "education." I have included a couple of screenshots from iTunes.</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 302px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhKjPYodKTpDLW093FN_mW07WJYM1wYZH2RUeAVAoM5_pM1-AAd3qq22m5dseB7NFbHNy605mbq8fEBK4RrahFmeEfuMMMMgbQZNE1BVgIn-i8Wox4nCpvNGvts1JTi9ZOMSWHdStZx_Na/s400/tap2talk.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5506955254648759874" /><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 304px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg12wRFeM7PjkCIC7VFxTDNgW13fZou8sW9RVkLVpFoPO1L2CaqvnrQ7p93pwOvRI0jwRWvpXzjgzH5RyEn_ujeBXtQPW3cja-PCUNUuRI_8M_lfSaBxlevrUERC5GulYw_c2Zzq4cQn_n1/s400/Prolo.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5506955012558181938" /></div><div>The iPad starts at $500, but it has so many other uses and so much augmentative communication devices can cost outrageous amounts. Plus most of the apps are free or just a few dollars if they cost anything. I think it would be worth checking out.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-51521064569971218932010-08-10T22:28:00.004-04:002010-08-10T22:44:11.191-04:00Sibling's GriefJacob is seven and Macayla's little brother. She died on May 22 and it is now August 10th. He has not cried or had any emotional outburst about Macayla yet. We have been concerned that he may be repressing his emotions. But a hospice counselor who has been working with Jacob gave us some encouragement and some signs to look for:<div><br /></div><div>If Jacob were to react strongly and negatively every time Macayla was mentioned (like run out of the room screaming) then we might have a problem.</div><div><br /></div><div>If Jacob just shut down and would not get out of bed or have difficulty functioning for no apparent reason, we might have a problem.</div><div><br /></div><div>If Jacob simply acted as though he was not hearing us when we speak about Macayla, then we might have a problem. (At times, I think he has mildly displayed this, but nothing troubling yet. Usually, he speaks very matter-of-fact about Macayla)</div><div><br /></div><div>Further, we have to be on the look out for regression in skills and behavior. He may be unable to perform tasks that were non-issues before Macayla passed. He may not perform well academically. He may start having obedience problems at home and school. </div><div><br /></div><div>Fortunately, we have witnessed none of this to speak of yet. School starts in a week for him. But the counselor reminded us that he has been preparing for this time just like us. He has grieved along the way also. We cannot stress enough to parents how important it is to allow a counselor into your life and your child's life when they are facing the loss of a loved one, especially a sibling. We, of course, recommend a counselor who has a Christ-centered worldview, but not everyone shares that stance. Seeking counsel is wise and healthy because there are just somethings we are not meant to do alone. Hospice organizations, such as the one that has served us, often have counselors on staff and some specialize in children. </div><div><br /></div><div>We have also learned to be straightforward and honest with Jacob's questions. Often adults try to shield the children when they ask about death, dying, caskets, etc. Children seem to do better when we are up front about it all. Granted, they don't necessarily need every detail of the death process, but speaking clearly and using consistent words will help. We typically use the word "died" instead of "passed away" for instance. We have explained the disease to him and the death process when it was happening. We also spoke about what happens after death and the funeral, casket, burial, etc. Be clear, simple and open. That is the advice we have been given.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-27277344493910740112010-07-31T07:00:00.001-04:002010-07-31T07:01:49.662-04:00Van UpdateThe van sold! Thanks to a new friend it sold via word-of-mouth and we are thankful it helped their family and ours.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-13025390497775836322010-06-24T21:13:00.025-04:002010-06-25T16:17:29.143-04:00Van For Sale!<div>We have our handicap van for sale! Hopefully, our price will be fair and helpful to another family and helpful for ours as well. (It's amazing what others are charging for handicap vans of similar age and mileage.)</div><div>This is a <b>2000 Dodge Ram Van 1500. -- 113000 miles</b> -- It has a Zephyr conversion package (high top and running boards. The higher top really was helpful when we needed to work on Macayla and stand next to her) -- <b>Braun wheelchair lift and additional seating provided by a jump seat that folds out of the way (see pictures below)</b> -- Power windows, Power locks, CD/Cassette, Cruise, Tilt, Rear Air, Alloy wheels, hitch receiver, power seat, wheelchair anchor system, and more!</div><div>For those who are local to our area, the van can be seen at Hayes Auto Sales on Clemson Blvd. in Anderson. Next to or really behind Office Depot. They will be glad to show you the van and let you drive it. They are selling it for us and that means you can do a trade in if necessary.</div><div><br /></div><div><b>Their hours are</b> </div><div>M-F 9 a.m. - 6:30 p.m. </div><div>Sat. 9 a.m. - 4:30 p.m.</div><div>Sunday closed.</div><div><br /></div><div>They are located @ 3415 Clemson Blvd. Anderson, SC</div><div>864-226-2472</div><div><br /></div><div><b><span class="Apple-style-span" style="font-size:large;">Asking $10, 500</span></b></div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCTb76bvrNNrPPdZr_u8m5mD7ypeTsE6JMwCZ7nxrgc703aGynb96VqzcG_32NrEAGzWQIkZP_qwoYC9DyccvAAxcnCoa8bBTmRwPKYLJVD6hzZObfPA6_hJ8O6GU5arYLuoX1IzF08ocU/s1600/IMG_3622.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCTb76bvrNNrPPdZr_u8m5mD7ypeTsE6JMwCZ7nxrgc703aGynb96VqzcG_32NrEAGzWQIkZP_qwoYC9DyccvAAxcnCoa8bBTmRwPKYLJVD6hzZObfPA6_hJ8O6GU5arYLuoX1IzF08ocU/s400/IMG_3622.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486520170820740690" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbQDILbbasUimWnbZALKSn1sHb-rzdkN870UiXyn9I6kRQQmDrSC-6lUo7O9Wyhr8Skaya1xYPhkoPGGq4OAac8tvdBHOg9nbQUmik-V9CsqekrmssRmgEgKwSPpR8hmQytK_WMXQMjTRg/s1600/IMG_3626.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbQDILbbasUimWnbZALKSn1sHb-rzdkN870UiXyn9I6kRQQmDrSC-6lUo7O9Wyhr8Skaya1xYPhkoPGGq4OAac8tvdBHOg9nbQUmik-V9CsqekrmssRmgEgKwSPpR8hmQytK_WMXQMjTRg/s400/IMG_3626.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486519946588145570" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHFgVFp_IYTKNqPGh8v5Q1tpnF_HsZOw2JGSXuVu3Jh4-RfwSBS2IopbMXxVF6yGgfBO9AIBhCyNagjweV7Yzsm-0QvmISs3ywcetjsFpdmhRHTEKfCLv1grxkO1x0N6t7ajO8Qk95jJAv/s1600/IMG_3619a.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHFgVFp_IYTKNqPGh8v5Q1tpnF_HsZOw2JGSXuVu3Jh4-RfwSBS2IopbMXxVF6yGgfBO9AIBhCyNagjweV7Yzsm-0QvmISs3ywcetjsFpdmhRHTEKfCLv1grxkO1x0N6t7ajO8Qk95jJAv/s400/IMG_3619a.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5486519387437074594" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFaBhrH2nEr2ncN095A1Q0BdYTWAtnUmNjq1GrjDJpqp_rbemIQN__GB7FPZ7skqnkrdCfDktfYPWIiiuY6r7FXZ_yBVhDw_M-P94blyY-K4gv0mUg_v2ZGhnnKGpiZVs7DxxxPayZfEoU/s1600/IMG_3608a.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFaBhrH2nEr2ncN095A1Q0BdYTWAtnUmNjq1GrjDJpqp_rbemIQN__GB7FPZ7skqnkrdCfDktfYPWIiiuY6r7FXZ_yBVhDw_M-P94blyY-K4gv0mUg_v2ZGhnnKGpiZVs7DxxxPayZfEoU/s400/IMG_3608a.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5486519251080609106" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir82eoZgg3szMunjnRwZNZGtCo-YOLZpjd1RlDePJXvlCXWvmlmrHRz0RauMjdobQV5iFN4q-TtF2OeEXLxIlzP0PEwCigwd3sXr1jwGqKCM2M02etrmH0QcibUiDlorjNuqpgD-f6kLBZ/s1600/IMG_3611.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir82eoZgg3szMunjnRwZNZGtCo-YOLZpjd1RlDePJXvlCXWvmlmrHRz0RauMjdobQV5iFN4q-TtF2OeEXLxIlzP0PEwCigwd3sXr1jwGqKCM2M02etrmH0QcibUiDlorjNuqpgD-f6kLBZ/s400/IMG_3611.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486519153620411922" /></a><div><br /></div><div>This control box is connected by an expanding cord. It can be used by the person on the lift or an assistant to operate the lift while standing outside. It moves the lift up and down and folds and unfolds the lift.</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEPQBkZh0dKKS-cTDIZ2ESVuTkVSotdEeCOfMzUe56L7kzM8Ii3JFGpaoQ5fLB-7XgBfT8b54p3_czzqevPXey88qBPnflE2hc7Sxs1aqpn1AaIiOcQ1VdT87N7TPuJm0zU1L9TbVSiefu/s1600/IMG_3610.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEPQBkZh0dKKS-cTDIZ2ESVuTkVSotdEeCOfMzUe56L7kzM8Ii3JFGpaoQ5fLB-7XgBfT8b54p3_czzqevPXey88qBPnflE2hc7Sxs1aqpn1AaIiOcQ1VdT87N7TPuJm0zU1L9TbVSiefu/s400/IMG_3610.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486518645202029618" /></a><div><div style="text-align: center;"><span class="Apple-style-span" style="color:#0000EE;"><u><br /></u></span></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEPQBkZh0dKKS-cTDIZ2ESVuTkVSotdEeCOfMzUe56L7kzM8Ii3JFGpaoQ5fLB-7XgBfT8b54p3_czzqevPXey88qBPnflE2hc7Sxs1aqpn1AaIiOcQ1VdT87N7TPuJm0zU1L9TbVSiefu/s1600/IMG_3610.JPG"></a><div>There are lights on both sides of the lift and they are very bright and helpful at night.</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC0sxuxFCipWYOXGo9DHAjkhlS9NRbWkgo0Ayfwg-L2Mle-69z7K7YiHJ7qXETvJaJ7s1OJhlBYrJxyiwfSxvxRNlRnptapy5HDZMkT7tSFRFIReWHnP2mwkwidNQfpRUb0-ryqU-mm6hf/s1600/IMG_3614.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 267px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC0sxuxFCipWYOXGo9DHAjkhlS9NRbWkgo0Ayfwg-L2Mle-69z7K7YiHJ7qXETvJaJ7s1OJhlBYrJxyiwfSxvxRNlRnptapy5HDZMkT7tSFRFIReWHnP2mwkwidNQfpRUb0-ryqU-mm6hf/s400/IMG_3614.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486518360187425394" /></a><br /><div>This switch is out where the person on the wheelchair can operate it once they roll up on the lift. (If they are able. The whole system can be operated by the special friend or their assistant.)</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif7aJJyxLW-p6D6dVmIhAHICAxLTFFv7_Xj7maajZtJgKOViiaJFYDiZee82VU3qtCICXveE_8FGGjMkgt5bssXGRRoqg13_P1rfpew959bRykiDNlEFtBAWs4nWfpsPUz36eZ4HwBHWvI/s1600/IMG_3615.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif7aJJyxLW-p6D6dVmIhAHICAxLTFFv7_Xj7maajZtJgKOViiaJFYDiZee82VU3qtCICXveE_8FGGjMkgt5bssXGRRoqg13_P1rfpew959bRykiDNlEFtBAWs4nWfpsPUz36eZ4HwBHWvI/s400/IMG_3615.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486518144385033330" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMGBRAAXReGFN_woiwas55j0k360lEG2cncFw3LVJZfQM5qmTRdyNQRp1An_0MXdFZmUXpH9mSZnzo7k723_n6oOXtIoMycXDCyC8PzAVthWZzZ-yIT_JFti3DvLraspRrEUsHijUcL-Tg/s1600/IMG_3612.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMGBRAAXReGFN_woiwas55j0k360lEG2cncFw3LVJZfQM5qmTRdyNQRp1An_0MXdFZmUXpH9mSZnzo7k723_n6oOXtIoMycXDCyC8PzAVthWZzZ-yIT_JFti3DvLraspRrEUsHijUcL-Tg/s400/IMG_3612.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486517954799244562" /></a></div><div>For the lift to clear on the way down, the rear bumper was removed. However, we still have said bumper incase someone wants to convert his back to a standard van.</div><div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD4BhFxXSd6FXE6LUKY094h-pFtDWr1bCfm2JvdTMxbVIn1Z98aGq4wdMyNqlAokfrba2AaGTRq2OEI9-Dnf22heTqU5qzdv_WPabTldiCguMctRbftoUxnaG0i_H93IXv7yxTup2xYeZw/s1600/IMG_3616.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD4BhFxXSd6FXE6LUKY094h-pFtDWr1bCfm2JvdTMxbVIn1Z98aGq4wdMyNqlAokfrba2AaGTRq2OEI9-Dnf22heTqU5qzdv_WPabTldiCguMctRbftoUxnaG0i_H93IXv7yxTup2xYeZw/s400/IMG_3616.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486517790158021106" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdrl3RBh12T5_z4l0UtBL9bECRKqMz4U4S0pF9FY-i0_dpWeHdr0sWs_YWlq9alL32SgtFdhDJPBAvNoisBZGpXqsnwEv3lAduW1HmwN0O7GC9LRiSrOEeqbtqHk-wYpvKw1WFvd4UvisJ/s1600/IMG_3617a.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdrl3RBh12T5_z4l0UtBL9bECRKqMz4U4S0pF9FY-i0_dpWeHdr0sWs_YWlq9alL32SgtFdhDJPBAvNoisBZGpXqsnwEv3lAduW1HmwN0O7GC9LRiSrOEeqbtqHk-wYpvKw1WFvd4UvisJ/s400/IMG_3617a.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5486517638635439858" /></a><br /><div>These help keep the doors open while operating the lift.</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGQSp9qu_EWtEUbKSzHuDMSi_15DF1Lel9rJoFTj2FEIINMY8E3sGep9hM5SIE_kHCqJQt3Zc7gMzmVHjeXEtC6HyqQj4O3Hbt64H12rS3I7z8UPXuyN_6Y-PMs2Bz5qEtl694aioWjrr2/s1600/IMG_3618.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGQSp9qu_EWtEUbKSzHuDMSi_15DF1Lel9rJoFTj2FEIINMY8E3sGep9hM5SIE_kHCqJQt3Zc7gMzmVHjeXEtC6HyqQj4O3Hbt64H12rS3I7z8UPXuyN_6Y-PMs2Bz5qEtl694aioWjrr2/s400/IMG_3618.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486517299347245266" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTery9by7ZcWXQgI8MN8whBFT8NSe57prL9Z7jeqxLZcrK2HGtRZYv0dZ5eAnA3XE64PZkoLZPgWjsXXjPPSeoaRHHTMXKRBGRKwqRV50iKM93OdmyRKwUUKC0uUPIb0dR8IpQcxejNQz0/s1600/IMG_3624.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTery9by7ZcWXQgI8MN8whBFT8NSe57prL9Z7jeqxLZcrK2HGtRZYv0dZ5eAnA3XE64PZkoLZPgWjsXXjPPSeoaRHHTMXKRBGRKwqRV50iKM93OdmyRKwUUKC0uUPIb0dR8IpQcxejNQz0/s400/IMG_3624.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486517181871809954" /></a><br /><div>There are controls on the inside of the van that control the lift. They are the yellow, orange and red switches on the right side of the lift. See below.</div><div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyq1G6TJA0K5i-bA1cw18iOz4gCrb4L1gCBN-GincYHpLSXxd51AzCE0h0j6TTfD1NLfALjSym8s-9CMo6PlfViScUpaoQQNb6GspJbPScEcZPo9svlB8gwqnb0HRIE5TGgCG7AzAl99CB/s1600/IMG_3606.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyq1G6TJA0K5i-bA1cw18iOz4gCrb4L1gCBN-GincYHpLSXxd51AzCE0h0j6TTfD1NLfALjSym8s-9CMo6PlfViScUpaoQQNb6GspJbPScEcZPo9svlB8gwqnb0HRIE5TGgCG7AzAl99CB/s400/IMG_3606.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486516851207441938" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJaU8y3CxtDsiZc1UlKM5uAxZOpAt-B5qo2V7Uw5HIJwzHQtdahneSWxUQMr81pxjdZqPWvPlXHCiJtbCWKNI8Sh3bN9Z9cC5wvqemxc5BXs8yP_aHCPAGHpjT-_IjaABbGnT8wx4FoWll/s1600/IMG_3595.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJaU8y3CxtDsiZc1UlKM5uAxZOpAt-B5qo2V7Uw5HIJwzHQtdahneSWxUQMr81pxjdZqPWvPlXHCiJtbCWKNI8Sh3bN9Z9cC5wvqemxc5BXs8yP_aHCPAGHpjT-_IjaABbGnT8wx4FoWll/s400/IMG_3595.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486516736197503474" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO4MxsSbh-J6YEyni6zLt2WZIvASYyTSwPNQ__pxrX-Ke1JqQvHT5cGQXkB-F-Zqf6YtN1EUevHhFZO23b9LbQhu2JdK2WBHsnjujfmu2qMJyfw0xq0sHDVVZ3xtYcqd_oClgHrzgjAM-V/s1600/IMG_3596.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO4MxsSbh-J6YEyni6zLt2WZIvASYyTSwPNQ__pxrX-Ke1JqQvHT5cGQXkB-F-Zqf6YtN1EUevHhFZO23b9LbQhu2JdK2WBHsnjujfmu2qMJyfw0xq0sHDVVZ3xtYcqd_oClgHrzgjAM-V/s400/IMG_3596.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486516652208241330" /></a><br /><div>We opted to install the lift in the rear so that our daughter and son could sit side by side. It also helped when she was not doing well and we had to take her somewhere. One of us could drive while the other or a nurse could sit next to her. It also helped with parking. It never fails that a person will park their little compact in the last handicap van spot. With the lift in the rear, we could park in normal spaces and still unload.</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8lwiCoLHZoxdPaQ5KLVkSgMvGRwaDTdff5K3LuJAdmh5Y55uSv3bCDw14rTqk9YY6iG1udr7R1e8ne4AURzNJ_FyPJLtd0K6H3PPtopR14xpscPzM9q1w0x3OepHll9GMDNQsr1p7w8-_/s1600/IMG_3598.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8lwiCoLHZoxdPaQ5KLVkSgMvGRwaDTdff5K3LuJAdmh5Y55uSv3bCDw14rTqk9YY6iG1udr7R1e8ne4AURzNJ_FyPJLtd0K6H3PPtopR14xpscPzM9q1w0x3OepHll9GMDNQsr1p7w8-_/s400/IMG_3598.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486515945017922818" /></a><br /><div>These are the Sure-Lok hooks for the wheelchair. There are four of them and the red switch releases it so you can pull more of the blue strap out and hook to the chair. The knob on the side ratchets the strap tighter. Once all four points are hooked on, the chair does not move. If you forget to tighten one, it will self-adjust as you ride down the road and tighten some of the way for you. There is also a seatbelt system for the person in the wheelchair if it is needed.</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidGS8B3GGw4_5j01FfyCfM9SUVWEJyrw_t01cpdV5VdanyszqNH-2FLnHPcHj3fc4Qi9CsNrEFMg8kO-XzGLy2rVuwS37E2fYuEoozV-Pk_X1JpwlQ8blCGAWBXjEF1ugI-fd-O7_2MbC4/s1600/IMG_3600.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidGS8B3GGw4_5j01FfyCfM9SUVWEJyrw_t01cpdV5VdanyszqNH-2FLnHPcHj3fc4Qi9CsNrEFMg8kO-XzGLy2rVuwS37E2fYuEoozV-Pk_X1JpwlQ8blCGAWBXjEF1ugI-fd-O7_2MbC4/s400/IMG_3600.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486515115741775506" /></a><br /><div>We had a jump seat installed and it has come in handy. Usually it stays folded up like this and out of the way. Once we pushed our daughter into place, we could lower this down and provide extra seating...</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDBnMQud9az04wtdJf8F5MPce1yUfpHApUvOubWUuaUY455ZnvPTxV1xeMuRXN6vQloaTYWWzwhc9ii1_Raoy8jcNncuQJeQdjGNSY2_RDrfZnylHAhyphenhyphenG-7jSMrn32krMMrmpSA9I6OF78/s1600/IMG_3602.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 267px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDBnMQud9az04wtdJf8F5MPce1yUfpHApUvOubWUuaUY455ZnvPTxV1xeMuRXN6vQloaTYWWzwhc9ii1_Raoy8jcNncuQJeQdjGNSY2_RDrfZnylHAhyphenhyphenG-7jSMrn32krMMrmpSA9I6OF78/s400/IMG_3602.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486514382800674594" /></a><div>The seat folds down like this, then...</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmuY3yaBNquj5B4njKkJwXbdcZlKh7AzOQP8U95wsNViInCLZRU_iTwqqnbevW9gczZrgCZIPLVH8Vm9j1Hva9NFXLorX2yyf_leXZ6LjSEVzI0tLp34Hq3TQjGyogOkl8H1qtZJsnE2q-/s1600/IMG_3603.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmuY3yaBNquj5B4njKkJwXbdcZlKh7AzOQP8U95wsNViInCLZRU_iTwqqnbevW9gczZrgCZIPLVH8Vm9j1Hva9NFXLorX2yyf_leXZ6LjSEVzI0tLp34Hq3TQjGyogOkl8H1qtZJsnE2q-/s400/IMG_3603.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486514122133165842" /></a><div><br /></div><div>...the back folds up and two people can sit here! It has seat belts also.</div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhROUzZT1l89IC1PdyXl_ar-b4VbHwngzd69HuYEFWry82isHIXjiaPBMFinRFQ_78NtSrhpMqmkI6D1D6rm2Yecvx1iyUbsqSaAyJ59D2NkSY5DAyXfjFTsG_iVMpAfE4Voiab1J5PQRlo/s1600/IMG_3605.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhROUzZT1l89IC1PdyXl_ar-b4VbHwngzd69HuYEFWry82isHIXjiaPBMFinRFQ_78NtSrhpMqmkI6D1D6rm2Yecvx1iyUbsqSaAyJ59D2NkSY5DAyXfjFTsG_iVMpAfE4Voiab1J5PQRlo/s400/IMG_3605.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486513872946531938" /></a><br /><div><br /></div><div><br /></div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEindL1mU_YFUCUAOl3lCCFt23J0HO1kU_yEJVaYS9kEjYrQfMFMhABAT-_MyFBrP7ztRSkngaeZD7uWrhkJE4UIX-BORGDP51v45xNuPxGGBEUt8JzDqcAs3CNuA2m3XYj-6r-i7GnvySyZ/s1600/IMG_3621.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEindL1mU_YFUCUAOl3lCCFt23J0HO1kU_yEJVaYS9kEjYrQfMFMhABAT-_MyFBrP7ztRSkngaeZD7uWrhkJE4UIX-BORGDP51v45xNuPxGGBEUt8JzDqcAs3CNuA2m3XYj-6r-i7GnvySyZ/s400/IMG_3621.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5486513565093585330" /></a><br /><br /></div></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-4679199442329184774.post-22380265369346113992010-05-29T06:49:00.006-04:002010-06-05T08:47:56.090-04:00Hospice - Symptoms of DeathThis is not what we ever wanted to post. Our daughter, Macayla, finished her fight with Battens and died on May 22, 2010, her 9th birthday. She has been steadily digressing since the fall. But over the last two weeks, we found it difficult to get any information on signs and symptoms for people who had reached the end of life. Fortunately, for us, we had several people around the last few days who had nursing experience with dying patients. They walked us through and prepared us for some of the coming symptoms and bodily responses we might see. We also had hospice nurses who came in from time to time to give guidance and offer support. <div><br /></div><div>My hope is to share our experience so that others may benefit. You may not want to read this and that is completely understandable. But for those who are in the midst of this and are looking for info, we hope and pray they can find something helpful here.</div><div><br /></div><div>Macayla's autonomic nervous system was being impacted by the disease. That is the part of the nervous system that controls all the automatic functions like breathing, bowels, heart, etc. This indicated that the disease was deteriorating the brain stem. The brain stem is quite resilient compared to the other parts of the brain. But even it cannot withstand Battens. We did not determine this with an MRI but through our genetics doctor who sized up Macayla's symptoms and put it together. This caused Macayla to have sporadic vomiting over the last couple of months as her stomach randomly contracted. Her bladder functioned but had erratic patterns and had to be cathed frequently. This symptom actually showed up over a year ago. At times it was worse than others. We also noticed over the last 6-8 months that her face would go from being red and flushed to pale without any fever or discernible reason. We learned that the autonomic nervous system also controlled how much the blood vessels dilated or constricted. This meant that the blood vessels would randomly open more in her face and make it appear red and flush. At other times they would constrict and there would be less blood flow in her face and she appeared very pale. So, over the last couple of months, we were able to recognize symptoms not previously seen. When our genetics doctor put all of it together, he guessed it was the autonomic system and brain stem being impacted. He was right.</div><div><br /></div><div>To the tough part. Macayla's experience is, of course, not necessarily what others will endure. But there may be some common symptoms. We are thankful for those who helped us evaluate them and it helped us make Macayla more comfortable. The last week was up and down. Kids who reach the end of life really keep you guessing. Adults can be more steady according to our friends at hospice. </div><div>Macayla had a week of frequent vomiting. Then I noticed an unusual breathing pattern on Friday night. She took two quick, deep breaths, followed by a shorter breath and then she would not breathe for about 8-10 seconds. She did not seem in distress. We learned this pattern is called Cheyne-Stokes (pronounced "chain-stokes"). Saturday morning she ran a fever of about 102 and her breathing was a normal pattern, but raspy. We took her in for a chest xray and they said it showed no pneumonia. Sunday night she began vomiting profusely and it was difficult to get her to recover. She had four bouts of vomiting through the night. Between those times, she was asleep, but her breathing was much more intense and started the Cheyne-Stokes pattern again. She seemed to be straining to breathe more than usual and the breaths were raspy. Suctioning did not help.</div><div>Her fever returned and got up to 103 and then went back down again without any medication. This indicated her hypothalamus in the brain stem was not functioning properly as it controls body temp. After a touch-and-go all nighter, Macayla recovered and slept most of the next day and night. On Tuesday afternoon, I finally was able to get some responses from her. Her last smile was on Tuesday afternoon. She fell asleep that evening and remained asleep the rest of the time.</div><div>The last three days of life we saw the following symptoms. I thought a list might make it easier for you. If you have any questions or want more detail, email or comment.</div><div>- Macayla's fever went up and down on its own without medicine over the course of a couple of hours.</div><div>- She had Cheyne-Stokes breathing patterns. She may have two or three breaths followed by a apnea spell that would last 10 seconds and as long as a minute (especially toward the end).</div><div>- Circulation centralized and blood flow to the limbs slowed. We had a hard time finding a pulse in her feet and legs and even the pulse in her wrist was weak at times.</div><div>- Her lungs got "wet" and began to fill with fluids. She sounded raspy on every breath and it got worse over time. She would cough some at first, but most of the time she was unable. In the hospital, they can stick a tube down into the lungs and keep them clearer, but at some point we would face the decision to remove the tube and in Macayla's case she would just start the process again. Intubation (as it is called) would not change what was happening to Macayla or the ultimate outcome for her. For others, it might buy some time if needed. We chose for Macayla to be at home and not attached to machines in the end. For our situation, the machines would not change anything. Each family must decide for themselves what is best.</div><div>- Her heart rate stayed elevated. She normally stays between 70-100 bpm, but then she stayed up between 130 - 170 bpm.</div><div>- Her kidneys also began slowing down earlier in the week. We had to cath her most of the week and during those last three days, we barely got anything with the catheter. What we did get was very dark and concentrated in smell. </div><div>- Her skin also became mottled on the bottom sides of her arms and legs first. This was difficult to notice for me, but the nurses noticed it right away. It looks like splotchy gray and blue discoloration on the skin. It's where the blood seems to not move as much and fluids are settling. </div><div>- The intestines and stomach stopped. This we were not prepared for. She started drastically leaking around her feeding tube. Everything just sat and since she was unable to urinate, all of her fluids were finding their way out around the feeding tube. We had to remove the feeding tube and use the suction machine to quickly remove the fluids gushing from her stomach. This helped, but it continued to build up and even had stool in it eventually. Stool will start to back up and can cause a patient to start vomiting stool. We removed the feeding tube multiple times and irrigated her stomach with water and the suction machine. It prevented her from vomiting more. The leaking was so bad we actually wrapped her torso with a diaper to help absorb it.</div><div>- Because her stomach did not work, her medicines were not being absorbed. She was not getting her seizure meds and she had multiple grand mal seizures during the last three days. We had started morphine and Ativan to help with nausea and spasms and pain. We had to go to morphine injections and an Ativan cream that absorbed through the skin. We also started a pain patch. There are multiple medications that can be compounded into cream that is absorbed through the skin. Even suppositories may loose their effectiveness if circulation slows down in the lower regions of the body. So, compounded creams can be helpful and applied to the wrists or chest.</div><div>- She had a couple of spells where she stopped breathing for several minutes. In fact, the first time she did this it lasted four minutes and her heart stopped beating. We thought that was it and then she started breathing again. As her apnea spells got longer, her heart would slow down, get irregular, and then she would start breathing and the heart rate would jump back up.</div><div>- The last few hours of life, her heart rate finally slowed down and stayed close to 100 bpm. She slowed her breathing down to 4 to 6 breaths per minute. Normal is 16-20.</div><div>- The nurses told us that often people will stop breathing, but the heart will keep going for several more minutes (as much as 10). But Macayla actually did the opposite. Her heart stopped and she took a few more breaths before it was over.</div><div>- One other thing of note. Macayla seemed a bit more responsive on the last day. She opened her eyes with stimulus. It may have been one of the ways she said goodbye. We also tried to reassure her the whole time that she would be o.k. and that we would be o.k. We told her that she could go home anytime she was ready. Dying people need to know this and need reassurance that those left behind are ready. Like with anything our children would do, we wanted to be supportive, but it was the hardest thing to support.</div><div><br /></div><div>Again, I only wanted to share this because it's hard to find info out there. Our experience was not exactly like others, but from what we gather from hospice and others, many of these symptoms are seen during the end of life.</div>Unknownnoreply@blogger.com9tag:blogger.com,1999:blog-4679199442329184774.post-66169520876202467302010-04-06T04:11:00.003-04:002010-04-06T04:18:50.151-04:00Alternating Air Mattress Helps Prevent Skin BreakdownAnyone who remains in the same position in the bed runs a risk of skin breakdown and bedsores. Hospitals often have special mattresses that automatically alternate pressure zones to reduce the likelihood of these problems.<div>Recently, we started noticing more and more issues with skin breakdown and our daughter's OT suggested an alternating air mattress. We discovered there are mattresses that can replace an existing mattress or there are covers that set on top of an existing mattress. Both work on the same principle. They attach to a motorized pump that constantly shifts air around in the different cells in the mattress. This means pressure is moved around and you can remain in the same position longer than on a regular mattress. We rent ours and have found it to be helpful. It is not as hot as memory foam or lamb's wool and when it comes to bedsores, heat and moisture are the enemies. Lamb's wool can help reduce sheering, but these mattresses help with pressure. It is certainly worth looking into if skin breakdown becomes an issue. Our daughter is very comfortable on hers.</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4679199442329184774.post-15424755822791122592010-01-19T11:16:00.008-05:002010-01-19T11:35:55.942-05:00Video Monitor a Huge Help!<div style="text-align: left;">For the last six months, we have been using a video monitor to keep tabs on our precious girl. It was one we got on sale and is made by "Summer" and available at Target and other places. The great features we love is that it is a color camera and monitor, picks up on sound well and has the ability to see in the dark. It also has a built in thermometer and the monitor displays the temp in our daughter's room.</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTKEV8ehW87oCYR3aV-pntFIglHby5iVY1IgVaNy1RQ53YeVBsgM9fTkvlRNb2F6bwvYCZ0zJ_9RfFAxivw-du667K1yEOL9iTiiEVk9CneopEmUL8hcKRg-jJ6nDZKzcPbKam4eCZhjHH/s320/Summer+camera.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5428488994188795282" /><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMcqIrzr2DxUjYC4KLRHg3dgeITvhcomCIdrbLIVWKDKRvm3IXoi46ioYV_duTO40Amzv-uI08xQZBBA7sESSXKhx7kWDVFUCdrUvOP-g6N0Ctz-nelcyZjcHwyvYeBHHt-Kogc84G3wKo/s320/Summer+monitor.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5428489188022218706" /><div>(I enhanced the picture in the monitor here for demonstration purposes.) We found, however, that we needed to have flexibility in where we mounted the camera so that as we changed our daughter's position, we could move the camera to stay in view of her face. That's the best way for us to tell if she was having a seizure. So, I utilized a $14 clamp-mounted desk lamp (sometimes called an architect's lamp) and modified it to hold the camera. The lamp arm clamps to our daughter's bed and gives us an adjustable arm to maneuver the camera position.</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr7rtr5jU6Hlv3mKWgb6_Ut6UBoBAgFGNhLLGq8MQQNU1pBKIK1cE09NFczH-E9tjdHfTmkWia_OvAzEZ96OVRMIcE6dV5knNWy59r1Hjycm8Az31vBXxKV4aTTYrnacir1MmlshicEnc1/s320/Summer+mount.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5428489674664893362" /><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixmtR8XhnUi2YYTYnqZihKuG7Q-WuMPKK5iy3eiotFEhaIoslkEW0V9R-zkVmZTTw5EwuYsSXl229jP9DcjnFNI5aLx7pMn3enNhQKNYG89SgRBQRZ03APkko6upBfm8qFcfOsDtnsmEUm/s320/Summer+arm.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5428489924953272338" /><div>I had to remove the light socket and switch, shade and cord from the lamp so as to leave me just the arm and springs. Then using a scrap piece of plywood, I made a platform for the camera to mount on. It has a built in slot for a screw head on the bottom so I simply mounted a screw into the plywood and slid the camera base on. However, there is only one slot (designed for the base to hang on a wall) so I used a rubber band around the other side to keep the camera base from moving. The camera itself swivels and tilts on its base. </div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhquZXPUwGiw_x0S-HK4ZJmK1ZAMHmg24BatFaq3HXpo0HJFF7KXfg842wvG3TtbX7FE1e1ARQxRHHOpt3pYunmK6Akkmz0gtgsV9tay8hAV9Xw0JxHrY9pLHPwmO0nO6TV0gGwLGB3C004/s320/summer+mount+2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5428490247898371442" /><div>With the base secured to the lamp arm, we have a very positional camera. The monitor it transmits to is rechargeable and has a decent range on it. I have only seen trouble with the signal if I get to the complete opposite end of the house (1600 sqft home) or if it gets too close to my wireless router. Other than that, it has been great. </div><div>You can even add an extra camera and switch back and forth on the monitor. It has been worth the money for sure.</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4679199442329184774.post-23498525361761918892009-11-04T05:08:00.006-05:002010-01-19T11:16:21.615-05:00Kangaroo Joey<div style="text-align: left;">We tried using a new feeding pump, the Kangaroo Joey, for a month. It certainly has some nice features and I like its user interface and options. It alarms when the feeding is done and the alarm's volume is adjustable. It seems to have more accurate measurements marked on the feed bags than the Zevex Infinity system. It has multiple advantages, but it was not a good fit for us.</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWc6PHNn-xjL9ZOtDeEONeAlNj0xsPmNpPpcobrBYxnhfgQaUYgNJLLXdBUAwQ4Ynw88NL9KtFWVolT5AAEdxCw_8gwH91fHVNF3D1Siumg3FgzDLd14Ydx1-cO89b9B5mJu4hfsEqjjft/s400/Joey+pump.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5428482736317116562" /><div>We use Elecare formula and it is a powder that has to be mixed. Apparently, powder formulas do not operate well in the Kangaroo system because it has a back-flow prevention valve that is pretty sensitive. The company who makes the Kangaroo stated we would have to blend the formula if we did not want there to be any problems. We noticed however, the post that turns the back-flow prevention valve on the feed set would get out of alignment and make it difficult to insert the set into the machine. We would notice this mainly when the tab on the set would not be centered in its corresponding hole on the pump door. The tab would actually be resting against the outer edge of that hole and would push back once the pump started. Then this would pop the door open and the pump would fail to function. We traded the pump out twice and never could figure out why this kept happening. Our best guess is that something was not quite right with the feed sets.</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgynWYfpm_M4tHej2wSc2SfhN24fJCYebS7YdMYo8qwF2cIKDayM_ZBydv9ooFBYl2OOruN5X6axLXgbu0w-hmNKQ6FfPattrfKg7g6r_6f4sBbowQkis5h87FjOnwjO15W2WrlhFmaFHG1/s320/Joey+door.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5428484295012291698" /><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHdNz02KreqnLTvdcWemMqjdhyphenhyphen-gO43U5OwysyOOR7QiYf7rhk-W2Hi4IqOhXg3A0i_XdG_lVd2czKfsEHbA6v13MT19mkz9b39kTriV4Jp3yxHVVBrJpla4VOMR93mPPYlCrvUsUFFPr-/s320/Joey+groove.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5428483127436748610" /></div><div>There are a lot of features we like about this system, but we did not find it to be reliable. We also noticed that the volume it dispensed was inaccurate. It would indicate it had delivered 250 ml of formula but we could tell less had been given. We actually measure our formula with a scale to ensure the volumes are correct. What we mixed and what the pump gave often varied by quite a bit. So, we have gone back to the Zevex pump and are dealing with the issues it presents. But it seems to be more accurate and is not as sensitive to mixed formula.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-17254051477857560072009-10-20T08:25:00.004-04:002009-11-04T05:08:29.286-05:00Kangaroo Joey vs. Zevex InfinityWe have switch feeding pumps from the <a href="http://www.moog.com/markets/medical-devices/enteral-nutrition/">Zevex Infinity</a> to the <a href="http://www.kendallhq.com/kendallhealthcare/pageBuilder.aspx?topicID=156963&breadcrumbs=0:121623,81039:0,73590:0">Kangaroo Joey</a>. Like anything there are pros and cons to either system. But so far, I prefer the screen and interface of the Joey over the Infinity. Without having to change screens, you can view where you are in a feeding. It doesn't seem to be as finicky once it is loaded and running. The Zevex can alarm often if the bag's set is not loaded perfectly or if one sensor is not happy about its readings. The alarming can be frustrating and hard to diagnose. However, actually loading the Joey has proven to be a bit troublesome. There is a back flow prevention valve in the tubing that has to be set in all the way for it to operate properly. Sometimes you have to push it in quite forcibly to make sure it is seated. The good thing is you know immediately if it is not seated correctly because the door on the pump will not stay closed if it is wrong. I also like how the feed bag is similar to an IV bag and more accurately shows the amount of formula inside. The Zevex feed bags, at least the 500 ml bags, were not accurate in their markings. The Joey also has a faster priming function.<div><br /><div>The Zevex does have the advantage in portability and positioning. The Joey requires six inches of fall between the bag and the pump, where as the Infinity can be position any where as long as all the air is out of the bag. The Infinity pump is flatter than the Joey and fits well in most places. The Joey is more cube-like. With Macayla being less mobile these days, we do not have to have these benefits of the Infinity, but for active children, the Infinity is great. The Infinity's door has problems with the <a href="http://uncommonneeds.blogspot.com/2009/01/zevex-feeding-pump-trouble-shooting.html">latch breaking</a>, but I heard the company is trying some other types of plastics to fix this. </div><div><br /></div><div>The Joey is new to us and we are waiting on a backpack for it and after we have had more time to learn it, I will post more if needed on troubleshooting. </div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-32024159137032780842009-09-07T13:25:00.004-04:002009-09-07T13:45:47.607-04:00Versed<div style="text-align: left;">We recently tried to control Macayla's grand mal seizures with Versed. Versed (ver - said) is often used in anesthesia and we get it in small, one mL vials. It is med meant to be given via injection, but this would take too long to have impact in the midst of seizures. Therefore, we give it to her buccally meaning between the cheek and gum without a needle. We use a vial cannula to draw up the med and then squeeze a few drops at a time between her cheek and gum. After we put a drop in, we massage that area of her mouth to help it absorb. Then we put the next drop in another place. Macayla's swallowing is impaired and even the single milliliter causes her to choke. We even suction her before we put it in. Within about a minute, we get the entire mL in.</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFG_FMLDlE2RUJ5eB63cjOCAPfYqfoXKa0v8bg1khodNn0AoppD2Wne_L4ia2_8XYbX1MNZ_kev9calPMdZXVFeA7091Gk0mVAHdwgXEaFFa5VR2NgnJKr3KZObZrOsz44VLGgHkz-neLr/s320/versed.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5378782798296467778" /><div>We have tried Versed because she has built a tolerance against Diastat. Unfortunately, the Versed does not have much effect either. This past set of seizures started and I did not wait for a second one. I could see she was not finished, so I gave her Versed immediately after the first one. The second seizure was less severe and she didn't have any more after that. I'm not sure if the Versed was the difference or if she simply was not going to have as many seizures that time. The bonus for using versed is that it is easier to administer. Diastat is a rectal gel and obviously requires us to pull down Macayla's pants and diaper. Versed can be administered while she is in her chair, bed or otherwise. It is supposed to absorb directly into the gums which is faster (and less painful) than an IV or IM injection. We just wish it was more effective. Midazolam is the technical name and also marketed under the names Dormicum, Hypnovel, or Midacum. </div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4679199442329184774.post-89259653064666357182009-08-05T15:15:00.016-04:002009-08-05T16:42:00.289-04:00DIY Beach Wheelchair<div style="text-align: left;"><span class="Apple-style-span" style="font-size: medium;">Going to the beach is a challenge with special needs. There are beach wheelchairs on the market and most of them will not work for a person with little or no tone to hold their torso or head in place. The real problem is the astronomical cost of these things. I'm not sure how their manufactures keep a clear conscience. I hope this entry encourages folks to make their own. Even if you spent $200-$300 in parts, it is cheaper than one you can get and it will be customized to your needs. I spent less than $130 by using what we had.</span></div><div><span class="Apple-style-span" style="font-size: medium;">So, to overcome this, we made our own. Our local </span><a href="http://www.familyconnectionsc.org/"><span class="Apple-style-span" style="font-size: medium;">Family Connection</span></a><span class="Apple-style-span" style="font-size: medium;"> office has a beach wheelchair we can borrow, but the seat is at a 90 degree angle which is not helpful for Macayla. Plus it has no lateral or head supports and she is too big for us to sit another type of seat on it. But we used the back wheels off of the chair for the chair we made. Below are some pictures and descriptions of what we did. I've tried to reference any websites for products that help with this. I made the frame out of PVC pipe and it held all 220 lbs. of me. I'm happy it held me, but sad I weigh that much! Anywho, It would be better if made out of furniture grade PVC and the better fittings you can get with it. Since I made the front wheels, I have discovered another way they can be done if you want to spend the money for it. This chair can be broken down for travel.</span></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">The beach chair fully assembled. </span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 382px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSV4wsvxWkEQLjNrRwKeEMIdHRZZY5Q8aycdssgUAqA97y8k2kfa071nEQC7I7UwszidONARApMNkpQLzU1JUJ4gmEEgalTdMOaGmeKLsZHK99XEkBSTvUWwsKcFxrZI841F97s_CZ6ANW/s400/beach+chair.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366564966764490642" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">This was a lounge chair that worked for Macayla as far as angles and reclining ability. It has similar angles to her articulating bed at home. We bought this one at Big Lots for $48. The chair simply sits down in the frame I built. I used heavy zip ties to hold the chair in place, though it could be done with bolts or other ways. Of course the lounge chair folds up for travel.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDVXgSSqHi9UJXIIQAFeHC2ZmvmX8P4vG53aa770ivZVlLOXpf22io_-fLS-cmCCCtUfRz-Esg2a-r8kkBrpeYDmSJhQL95US5QCvbFTulbY0dhLUZIO2kRSiEHgV6QcrROdoM-vZ2Z45X/s400/chair+without+cover.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366564798662323538" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">The blue cover we found at </span><a href="http://www.bedbathandbeyond.com/"><span class="Apple-style-span" style="font-size: medium;">Bed, Bath & Beyond</span></a><span class="Apple-style-span" style="font-size: medium;"> for $20 minus the 20% off coupon. It is terry cloth and is meant to drape over a normal lounge chair. Below are some straps my mom sewed on to it so we could cinch the cover on the chair tightly at the head. This helped to keep the headrest in place (shown a few pictures below). </span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1DDtYJBFaZTH3Jd66028XPSYFpIvQo-ZjSvmZeSB4N6vZPw_yLZ9kBv0ahAhsgCTn_7sy8UwJ5SGjCOFsER99BagwjaIny_RnldwOpzbLV2EzHTKAla_Sph1qM29-1b_wGcTtzlIMvxTc/s400/straps+on+cover.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366564525172742690" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">We created a lateral support system with a child's life vest. It had enough straps on it to strap securely to the chair and stay in place. I added a strap to hold it together around her torso like a big belt. This could also be accomplished easier with </span><a href="http://www.adaptivemall.com/riblwaexsubl.html"><span class="Apple-style-span" style="font-size: medium;">the lateral supports that can be ordered for bath chairs.</span></a><span class="Apple-style-span" style="font-size: medium;"> We did not have the time to order any before our trip. Plus this saved us some money. The blue pillows were also bought at </span><a href="http://www.bedbathandbeyond.com/"><span class="Apple-style-span" style="font-size: medium;">Bed, Bath & Beyond</span></a><span class="Apple-style-span" style="font-size: medium;">. They are designed for lounge chairs and have straps with clips to clip onto the chair. We strapped them onto the arms for extra comfort.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMrlFXPSIIS0w53F3QpzBVxfota56l2rCN6XhY5VCRhnRf7F4ogPABkJ8C2a1_KjI5Eg708TP8sOhWkCIJ_fgakY0fpor45z2WX8gAEtZLY1D_z127TbmAthy38r0l0yAnnqRb0DQkmdK1/s400/seat+closeup.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366564250852220306" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">This is the other side of the lateral belt. It is a child's life vest that is worn like a sandwich board. The straps that normally wrap around the child's torso were used to strap the vest to the chair.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 267px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaRc7e0bR5sVQi0mNL4u-KJQSrZWSm6NcUwRjmE0IWauBm85vZkB1lpTJu_4bkAuMv2BxjfKKpmTMEhVQbIlUtT1ITVEITZs72cIdGFZZhvV4n9dl143Psg3DJIb2IiPvyKNCaPsp8Cqmw/s400/lateral+belt.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366564030241945970" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">We used velcro to attach this hand towel to the life jacket so it would be more comfortable.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW-RvhxBstuSKwyGHPG8PlLBwyFlFhjSsvrbo32q0o3ns2QZP0ZIxaXM4T2VLEDucH_wMgx9cP54ZN-SuNO0BhcCJXDC2sIlQctO_oII15ofWEIFSQdtZCS9LQhIai2TddAM7y5TYDH_9Z/s400/velcro.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366563820431924738" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">This is a close up of the headrest. We found some "hot tub" pillows at </span><a href="http://www.bedbathandbeyond.com/"><span class="Apple-style-span" style="font-size: medium;">Bed, Bath and Beyond</span></a><span class="Apple-style-span" style="font-size: medium;"> on clearance. They are vinyl-coated foam pillows with a weighted flange on them meant for someone to lean their head back on while sitting in a hot tub. We cut the flange off and used one on each side of Macayla's head to keep it in place. The blue lounge chair cover has pockets that hang off of each side to stow stuff. We cut two of the pockets off and they happened to be the right size for these pillows. We sewed the pockets in position and inserted the pillows. My mom utilized some ties from the cover and a button she found at Wal-mart to close the pockets and keep the pillows in. This really kept Macayla's head from flopping over to either side.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkp7EeABF9f-iThwuq9JQMGhcpwLSFv-8u0r1LR8Mc2Zrxr12bNhHEqrYpuXPaDqJ4YfWp70IWqFR42xYMqlYIRR6wDJz76O1sTUSAETRmpNWnvNj9d6cya4opfXXAsEMQRPKti0-4O3go/s400/headrest.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366563568197293522" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">As one of the ways to make the chair more compact for travel, I used an old bike carrier for a car. I cut it so that I could slide the 1" PVC pipe over it and use self-tapping screws to hold the pipe onto the tubing of the bike carrier. The arms meant to hold the bikes became the arms that went back to my push handle for the chair. When the chair is disassembled, I can fold up the handle section in the same way the bike carrier folded up.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizyn1NBs49qg0AoGINjBX1TcnGnZvK-lKIGX6hz6rvd8sdYsEruomAo5Kf58D4weVhXPJGBWzULxavpMOWGYjseelYW91_HCW-ar6jXZdAZK31X-otqLkpM-5ndC9ATFyBTAouuLOjx8Gd/s400/bike+carrier.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366563120865379778" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">1" aluminum tubing (available at Lowe's or Home Depot) slides perfectly inside 1" PVC pipe. Here I bolted a PVC pipe to the frame and there is aluminum tubing inside it. The aluminum extends up and is exposed above the frame. The PVC from the bike-carrier handle then slides over the exposed aluminum tubing. I then used a pin from said hardware stores to lock the two together. So, bolts hold the pipe and tubing together and to the frame. A removable pin holds the handle's PVC and tubing together just above the frame.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjbnG8ItiAhyEFI0gEF_HI80jyE3pMYhs-3EtCMLX9YvNXUHUTAIam29Yu-6nbm-mgbR1Xkugpl7ERVmjvoArEmCM_DVAy1EqJjIsYGsdFTalehpTUcmayv23Ub4GY6pnkNX0qfucXwGxb/s400/bolted+handle.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366562963271875634" /></div><div><span class="Apple-style-span" style="font-size: medium;">These are the </span><a href="http://rolleezwheels.net/"><span class="Apple-style-span" style="font-size: medium;">Roleez</span></a><span class="Apple-style-span" style="font-size: medium;"> wheels we borrowed. There is another brand called </span><a href="http://www.wheeleez.com/"><span class="Apple-style-span" style="font-size: medium;">Wheeleez</span></a><span class="Apple-style-span" style="font-size: medium;"> as well. They slide perfectly onto the 1" aluminum tubing. Thus, my axel is one long piece of tubing that runs through the frame from one side to the other with enough excess on each side for these wheels. Removable pins keep them from coming off.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZPMMi2eODpEiyr_4YED4IrWEZR0SdL2s7vVOkxgdLEDMo9g8zFzcp8fZLtxo-cZCjAonVq7Bsb7iiLXUv1F0Se1XreKsIUcI2x73DCm3-_KuTbAZEFLwy5mOIm1iWSSqUds0gi4TBuAIF/s400/roleez+wheel.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366562708734023442" /></div><div style="text-align: left;"><span class="Apple-style-span" style="font-size: medium;">This is how the umbrella stays in place. I used a piece of PVC pipe that is screwed to the frame. When we used it on the beach, the pole stuck in the sand acted as a brake as well. </span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLE_5QtBvFlr7pmJFgZnokDsrdIPSxPVcC3hytCJkt1wbA36TBbseGMyqPwpDsLTWcDkXw9DCi0WG75tDsI2mRw47Zyi2PwJcFlse98xzskjaQcNlCmGlKLX94c98-GUwaOyy5fCTV3qV8/s400/umbrella+mount.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366562391784515810" /></div><div style="text-align: center;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div style="text-align: left;"><span class="Apple-style-span" style="font-size: medium;">These are the front wheels I made for the chair. They are constructed out of PVC and swivel like normal dolly wheels. They also detach from the frame with removable pins to make packing easier. There are easier ways to accomplish this and there are now dolly versions of the Wheeleez wheels now that can be mounted . But they are not cheap. So, I made these.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1zsRNwV-kB5is3FJAk_61i4sDFGKhEiQV2IdyKzNWhqEN5hyphenhyphenSalAXKl1NkqtXbxITj_Bqek9CqMnDGbxwjaHxvE7Um6LBiF8nH-n_Q3ubghJKLTqdU1UrPD1s92tTZCspimTxiwL3djKz/s400/front+wheel+on.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5366562207113095266" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">This is the detached front wheel. The aluminum tubing inserts into the frame and gives the connection more strength. I found that a 1" coupling fits well into a 1 1/4" coupling or fitting and can spin freely. Using this, I was able to mesh 1" and 1 1/4" fittings to make the dollies spin 360 degrees. The tires here are pneumatic wheels made for hand trucks or garden wagons. I had to use a smaller 1/2" pipe for an axel that could fit inside PVC pipe. Thus, I used an elbow fitting that reduced from 1" to 1/2" at the wheel. This whole assembly should be reinforced with 1" aluminum tubing inside above the 45 degree elbow.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2SR0Bg07jaIB2OTq54u1FnEZNSz9GniX41ju6NSe6GNl0VbWaVr895P1XlCulW0ymCPqRP81rOOeqwCbdWdycNKAykWYq-mNcucyCydAuYLrrUdYJ0Yb0XKvCS1YJntSr31crdQ4T-g7U/s400/Front+wheel.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5366561904228133698" /></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">Overall, this chair worked well for us. Macayla really relaxed in it and even fell asleep in it every time we used it. It made it very easy to mover her around the beach.</span></div><div><br /></div>Unknownnoreply@blogger.com23tag:blogger.com,1999:blog-4679199442329184774.post-58426654085870269292009-03-24T11:13:00.008-04:002009-03-24T11:26:38.615-04:00Catheter System<span class="Apple-style-span" style="font-size: medium;">This year, Macayla started struggling from time to time to empty her bladder on her own. We have had to use catheters often and had a system recommended to us that has been great. </span><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsxaNznzzlPiVdpYOhcpiDdB4wNKCpaRRmLWWt_m39GzOQiqCiiLOHRdJ2Fgvu-qrHIskavp7FHJHb8FrOG-VRdd1X-doCwcoAFkW9lKcWLEnWRT_idBuczLP5iVE8jKweffHhkWayUP1K/s320/IMG_0299.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5316773259067747538" /><div style="text-align: center;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">Rusch/MMG makes a self-contained catheter system that can be used by anyone. It is portable and has all that you need. It has Beta-dine swabs for sterilization, a small, fold-out chucks pad, gloves, and a bag with a self-contained catheter and lubricant.</span></div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHKzOM27dWS77jrh9zmzkKbi8eHm5eK2Wt_qZvqL8W8kD4fLirTjCg1XZtuJLzdyTWnmL-Ja5h6kMrWq3jd7QRjDvRo3yfyGGY69lO1_Ih36GpYWNQuBL604H0oquJ3p0FHGwjGCt1ihn2/s320/IMG_0300.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5316773555450932690" /><div style="text-align: center;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ_t5p71uNwDN_PEy-hkqForAWKgShn3aSc-B5vSouJfHarNnpcop3NTkANC40mVCAMqA7NfWv_f_tWwhuQQ4XLezLUT97yetfeUJ-lgWkiQbw0PacaN4Lc1oa4URqxIFCANCAvx9LEFsq/s200/IMG_0301.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5316774246921975938" /></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2OYztOMd4bUIwVDS-aFLhWKeMcVl9LTYVZwVNJjdtDvg7d0Ux7XbrDH5EVTFeECCoo004N8o1xRU7uNaHNZFTg8CMqPHaL0claPADeT4yIrs5e0b_HRQGat0IjdlIcBTVsEiyStQJcCmS/s200/IMG_0302.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5316775058595485426" /></div><div><span class="Apple-style-span" style="font-size: medium;">There is a cap on the top of the bag that covers the tip of the catheter. There is lubricant inside the cap. Once it is removed, the catheter extends out of the bag and once it is done, it retracts back into the bag and the cap can be put back on. The bag can be torn open and emptied and</span></div><div><span class="Apple-style-span" style="font-size: medium;"> then thrown away. We have found it to be a quick, simple and convenient system.</span><br /></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1LOWRpWa6DmZk5t5pQfcUsdAlYIzNmyqKHtqUJ0jj73EUChmM4yGojfqw1uE5Lx671q_L0OtZFXyzA0ewV2Ly-x7lhhmlj8cjVLw2_oP28XybbVchuBwbUgvodCLAVy06JRj2Pgd9qSnZ/s200/IMG_0303.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5316775490831320738" /></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6h8_SH-PGFmWjyyROf2TYVnp9koOP6XLCraUEfcY48MFRm9KQA1hGb7Fmmo0mojGPwlPbfc4YxhR6s7kr6OjA_jHDHF1ZX7zaFcod9RUeWKPj1mNA_E-BaF6m6_8NybNiFsZoPQkedRgj/s200/IMG_0304.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5316775727167877938" /></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4679199442329184774.post-76309092440091516672009-03-24T11:02:00.004-04:002009-03-24T11:13:21.472-04:00Zevex Feeding Pump Trouble Shooting II<span class="Apple-style-span" style="font-size: medium;">The only other time I have had a problem with this feeding system, is when you load the bag full of food and the tubing is primed but every time I push the "Run/Pause" button, it tells me "No Flow Out" immediately. In other words, the pump did not even push any formula and it gave me this reading. I will double check the tubing to make sure it is not crimped. I manually push formula through and it flows fine, but the pump still says there is no flow out. This happened twice a month or so and if I changed bags, it solved the problem. However, that means a whole bag was wasted and our equipment provider is a stickler for only sending the order out when they can bill for it and not a day sooner.Then I discovered the culprit. If you look at the blue set that goes in the pump, you will notice how it is attached to the clear plastic.</span><div><div style="text-align: center;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEing4czHynatjOMfoxQbVAz2aikfIwh_oqduCYeduE0ZY5KjaMyDzij-66sPTN5uaMa6gaOK5hgRuyhyphenhyphenn3A0Mruk6ckDDIYg3do_3rkr-q5lzBNGDGGizzMsFcJsRaOdzlTkS2lROR02NsQ/s320/IMG_0296.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5316771151404130226" /></div></div><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">Notice the blue nodules that insert up into the clear plastic on both sides. I discovered that if one of those is not fully seated, the pump will not function. It must be pushed up into the clear plastic as far as it can.</span></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiEIci96eNS8EcG5o71LFbDo8sbm1n4C1N201KD4kh6kuHhb0gjSA5k0tg8A2KYFykiFnpZ-y3FyOHA3p53BqK7gkAsXS6jdRI7w59xheYraEqEcmjhf08QTojQkBGJgWLGlsz8D8TNvgu/s320/IMG_0297.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5316771888283724418" /></div><div><span class="Apple-style-span" style="font-size: medium;">This little deviation in the blue tubing stops everything. But it is simple enough to fix and that means less feed bags lost.</span></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4679199442329184774.post-22992847558991090062009-01-10T12:45:00.007-05:002009-01-11T06:54:26.609-05:00Zevex Feeding Pump Trouble Shooting<span class="Apple-style-span" style="font-size: medium;">Check out the first post below about this pump system. As I mentioned there, we have been happy with the system, but there are times when it fails or causes frustration. I invite any others who are familiar with this pump to add their experience here as well. Or let us know if you have used or seen a better system.</span><div><span class="Apple-style-span" style="font-size: medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size: medium;">The latch on the pump door will weaken over time and break from normal use. It is part of the molded plastic door and is flexible, but within 8 months, it will begin to crack and break off. This is a problem since the pump will not operate unless the door is latched closed. Usually, the equipment provider can switch out the pump for you, but this takes time and feedings cannot stop while you wait for a replacement. The first sign of the cracking is when the latch feels looser than normal. Then, if you look closely, you will notice a hairline crack across the top of the latch.</span></div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDs4V1K2YyKlKN9TeXFnNNEA8oKk0J6bvqL3utYC2PVmeWyUIAPv_mlIKG2qRhyphenhyphenEgf8WhUhoEgeNrlBBCm9gTMNQq7ARjWhNFVG6QoSnsCjInm6uz_Sfdglh09pjNyyiVr8mx_2TPxbOkU/s320/IMG_0010.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5289999433901024098" /><div><span class="Apple-style-span" style="font-size: medium;">We have found a couple of ways to deal with this. Before the latch piece actually breaks off, I will cut a strip off of an index card length wise and then fold it in half over and over until it is the right thickness to wedge under the latch. (see the next photo) It just has to be thick enough to firm up the latch so that it can still flex enough to work, but not flex as far as it was. By making it tighter, it gives more time before it actually will break off.</span></div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8a3buip5hvZ9KHYKWFvBW77TlgvfHq5TxaUoshNuLdNd0PAbFLIhrQG1W5pIlANnQ4yh_IJmyB1aAfH1TIc2j09Ly4Ww_hVL0N7RwkQHlPVP87JYREQ-J9-K9aGLyVBOOdkWPYNB5VTQ9/s320/IMG_0011+copy.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5290001028606968626" /><div><span class="Apple-style-span" style="font-size: medium;">Once it does break off, the pump door will no longer stay closed and therefore not function. To remedy this, we have used the velcro strap inside the backpack (the larger one only) to strap the pump in place tight enough to hold the door closed. </span></div><div><span class="Apple-style-span" style="font-size: medium;">The straps in the mini backpack will not do this. The only problem is that the elastic in this strap will wear out over time and not hold the door as well. So, there is a small size bungee cord that works perfectly. As far as I know, it is the smallest one they make. After the set from the bag is installed over the wheel and the pump door is closed, this cord will hold the door closed tight enough for it to function.</span></div><div><span class="Apple-style-span" style="font-size: medium;">These are just a couple of things we have done to make this system work while waiting on a replacement pump or just the replacement door for the pump. I have emailed the company about its design, but they have yet to respond. There is another couple of flow problems I will talk about in the next post.</span></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4679199442329184774.post-30492656333795678902009-01-10T12:04:00.010-05:002009-01-10T12:45:18.951-05:00Zevex Feeding Pump<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA64OXmUidNNh0DM6h3vUWqW6N-xBmYncZVrpgPYygxHuY3P-puwsTsMNDVGDrxr_02PSOo2dN2VWcgig6mNfZL-ho0WODhY1PJHPccyP5FbTBtXRqtch85AaH1m3HycFyQckLa_dUtyTS/s1600-h/IMG_0002.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA64OXmUidNNh0DM6h3vUWqW6N-xBmYncZVrpgPYygxHuY3P-puwsTsMNDVGDrxr_02PSOo2dN2VWcgig6mNfZL-ho0WODhY1PJHPccyP5FbTBtXRqtch85AaH1m3HycFyQckLa_dUtyTS/s200/IMG_0002.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5289715821806849794" /></a><span class="Apple-style-span" style="font-size:medium;">Macayla has a Zevex Enteralite Infinity feeding pump. It is a good system and she has used it for over two years now. We have enjoyed its portability and adjustability. It can be carried in a specially designed backpack and does not rely on gravity to work. It can be attached to a pole for bedtime as well with the pole clamp that is included. We wanted to include a few posts on this pump and point out a few troubleshooting ideas we have learned over the last two years using this pump.</span><div><span class="Apple-style-span" style="font-size:medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size:medium;"> First, many nurses may not be familiar with they system as it differs from most hospital pumps. It is compact so many of the buttons on it do two functions. For example, the Run/Pause button is one button used to start the pump and stop the pump. The Vol/Total button is pressed once to show the current volume and if it is pressed again it will show the Total volume for the day. If you press the this button once and show the current volume and press the Clear button, it will only clear out the current volume and not the Total Volume. Since our daughter has struggled at various times to tolerate food, it has helped to be able to keep track of the Total volume throughout the day and only clear it before starting the next day's feeding. </span><div><div><span class="Apple-style-span" style="font-size:medium;">Basically the pump works like this:</span></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitruOVWkW-YpiJtrMCTlYZZSzY6e2frC2pjtG83g1tRwmjE9E_6k_ZVwTdjIzZXfHtzzd9JX4Idck1nnjsb2t5gZMhx7DfGxoPquDBy30EUif8iYseD_UeAFHjQrALLSnnSh5c9yz1QvSE/s200/IMG_0004.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5289716313683153042" /></div><div><br /><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPCw5JfVeyQQmivwqiouaRjpWhjNDq7tJl5X_a3Xtox3r2iuayG5PxMtQbm-xsD0ddmay9NaH3aebM6MOTau7Vpg_ZLU3nbof0H6R8o54rLlz26oYik68UyZ4zsHAuCerssMG1uK5QuVjI/s200/IMG_0005.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5289716600721410034" /></div><div><br /></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSJLQkUZWLfyXNt4wKgW3xVazPvqa4mmWty7vLNBrSRJ4huphgOjp3-zNVbR27PvSlKpTWnT7Jiyky0G8llHV-xIDf9lQqirDfnHbKqdZwAuJL9cOyS9QaQohYrgejOkqhEZbFY5uY77O-/s200/IMG_0009.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5289717096334754114" /></div><div><span class="Apple-style-span" style="font-size: medium;">Each bag (available in 500 ml or 1200 ml sizes) have a specially designed set that fits over the pump wheel. The door then shuts over it and must be closed in order for it to work. Then it is a matter of turning it on, setting the rate and dose and getting it started. There is a catheter tip (cone shaped) on the end of the tubing that fits into feeding tube connectors. So, it will mesh with most feeding tubes. The gray rectangle in the photo is the screen that indicates all the settings.<br /></span></div><div><span class="Apple-style-span" style="font-size: medium;"> </span></div><div><span class="Apple-style-span" style="font-size:medium;">The pump has a Prime button on it, so you can fill the bag, install the set over the pump wheel, close the door and then press and hold the Prime button. It will push formula all the way through the tubing. But there is a faster way to do this. If you will notice in these photos there is a "longer" side to the set. On that longer side, you will see a teardrop shape on the blue tubing. It indicates the spot that must be pressed in order for the formula to flow through. There is a small stem inside the tubing and when it is pressed down or over, it allows formula to flow. </span></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha3SVnUrh9JIHLVJbb0Rn3HDUOcwPH1GFpnszVOPoweWXxwvRsub_zczWIvicxhhiZI77-yF69gTMXLVK5WkEI5uIlIUQzq36JnsNONjTPUqB1bXblxsVOMev_InFx_gFS8C-8gFLbg1Ly/s200/IMG_0006.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5289719850620669458" /></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCFHJFVB99Wn7QB9yRIcYUIwNtuMNjJgVOm89frITv9yZpzEFm5zrY9xKVH-uqyu0_je6MYHwZ3z57J5FtMsJB6x4e9hHb2-w8X3IjNz0cY-MauKE-hphmuH-wQfUot8_d_9hJPHClI1vB/s200/IMG_0007.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5289720102033389570" /></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 134px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGcxg4qyHNcPVyFia7ZCjXgjpeeR9VHEQ8f25h-AAiTusOffCL6zWaMW7pzRXgjXXgmciglYGPsM1Mkk7opR5gETXG18b2sIrCVgY9aqRrIqsFNMth_r8S264FnOrNSAbzdkOeBG_JWDVt/s200/IMG_0008.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5289720347844373330" /></div><div><span class="Apple-style-span" style="font-size: medium;">I use my thumb and push the teardrop section of the blue tubing while holding the filled bag. With pressure on the bag and </span><span class="Apple-style-span" style="font-weight: bold; "><span class="Apple-style-span" style="font-size: medium;">gentle</span></span><span class="Apple-style-span" style="font-size: medium;"> pressure on the blue tubing, the formula will flow quickly to prime the rest of the tubing. If you hold the bag upside down and allow all of the air to reach the tubing first, then there will be no air left in the bag and it won't matter if the bag is upside down, sideways or any other direction. Gravity will not be needed to keep the formula flowing. </span><br /></div><div><span class="Apple-style-span" style="font-size:medium;"><br /></span></div><div><span class="Apple-style-span" style="font-size:medium;">Overall, a good system. However, it takes a little practice to prime the tube by hand. Sometimes those sets (the blue tubing portion) fail and cause the pump to not work. I'll deal with that in the next post. </span></div></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-59431564125200183582008-07-27T10:04:00.004-04:002008-07-27T10:25:26.679-04:00Special Needs Bike Trailer<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoKcdQIiMm3XEQRiv5BiQwn7dY6McxITONfO_bGjeCfyUbKh-gxh88sy2MatcG6C7s1gf3Fvz87nprte98MhEBXZejqTFNz_sTP1DJytk9NTpqvASv3jkN-eW2YBRP9qZ4eeQzlTL0lnkv/s1600-h/IMG_9363_2.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoKcdQIiMm3XEQRiv5BiQwn7dY6McxITONfO_bGjeCfyUbKh-gxh88sy2MatcG6C7s1gf3Fvz87nprte98MhEBXZejqTFNz_sTP1DJytk9NTpqvASv3jkN-eW2YBRP9qZ4eeQzlTL0lnkv/s200/IMG_9363_2.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5227698647931336882" /></a><span class="Apple-style-span" style="font-size:medium;">Recently, we went to the beach and wanted to take Macayla on a bike ride, but the only way that would be possible is with a special needs bike trailer. They cost thousands of dollars and we could not spend that. Fortunately, Macayla's wheelchair is more like a stroller where the seat comes off of the base and is held on by two rails that it slides onto. I was able to get two additional rails from Palmetto Seating who supplied the chair for us. I picked up a regular bike trailer meant for carrying small kids with a capacity of 100 lbs. I took all of the fabric off of it and with some scrap lumber I had around the house, I made a platform that Macayla's seat could latch onto. I spent $85 on the bike trailer, $10 on a trifold lounge chair (I used the middle section of it for the platform) and another $15 in hardware. Her chair fit right on it and it worked great. It was not as hard to pull as I thought it might be. She enjoyed the ride and we have a piece of equipment that we can keep for just over $100 that would have cost us thousands otherwise. I think I can also <img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-Pet5kfENf5bLJpBNcgdBwPr0KvD4MQ55dREXN9fBedD03edg2Qc75EMk8BohbNLQv5dDzSqfHbx4wDv5VG3rJ8HxEJWD4qLxBbewxPjKVd55O4qww0iqbdmOXpIZmh93pPUD8UZ6AEVC/s200/IMG_9371_2.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5227699110599185698" />make a platform for her seating system from her Zippie wheelchair that we keep as back-up. The great thing about the kid carrier trailers is that they have a ready made attachment to convert them into a stroller. So when we got somewhere, the trailer quickly disconnected from the bike and we simply attached a front dolly wheel to the trailer tongue. The trailer was made by In-Step which is a Schwinn product. This has been a pretty good success so far and with a few modifications, it could be even better.</span>Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-4679199442329184774.post-7932266569055400892008-07-14T09:30:00.002-04:002008-07-14T09:58:46.906-04:00Wheelchair LiftWe have a wheelchair lift and the process of shopping and deciding on a lift can be frustrating. We spoke with several providers and many were difficult to deal with. We finally went with <a href="http://www.classiccoachsc.com">Classic Coach in Spartanburg, SC</a> because Joe there was great to work with and was a great listener. He is very familiar with different equipment options and is a good educator. When searching for a provider, it is good to find someone who has a hands-on familiarity with the different equipment and what is possible in different vehicle types.<div>In our case we found a 2000 Dodge Ram conversion van with the high roof. We wanted the ability to have Macayla sit in the middle section of the van behind the driver seat and still leave room to sit in the captains chair in the middle section on the passenger side. This meant we had to have a rear-entry lift. We have found this to be very helpful in parking as handicap parking is usually hard to find. With the rear entry we can park in a normal space and still unload. The drawback is packing for trips. The only open space in the van for packing is the rear section, but that impedes loading and unloading Macayla on long trips. We removed the original bench seat in the rear of the van, but Joe at Classic Coach installed a special, two-person fold-away seat in the rear section. It gives extra seating when necessary, but folds out of the way the rest of the time. </div><div>We have a Braun Millennium Series lift that has a solid platform and folds up into the back door of the van (they are barn-door style). This is a fairly simple lift and has worked well. We have only had one problem with it when a hydraulic hose leaked. Other than that it has held up well for the last two years. A friend of ours has a side-entry lift that folds out of the way of the door after it folds up into position. It is nice because others can still access the van through the side door when the lift is stowed. Our lift blocks the entire rear door in the stowed position. However, our friend's lift is a bit more complicated and has had a few frustrating glitches with all of its safety features. They also must park somewhere that has enough space on the side of the van for loading and unloading. There are obvious trade-offs for different lifts and designs, but when you have a good provider who can help educate and brainstorm through the decision-making process. <a href="http://www.classiccoachsc.com">The Classic Coach website</a> has some great pictures of different options and it has links to three major lift companies that are worth checking out. </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-19425902629870249232008-07-11T07:48:00.002-04:002008-07-11T07:58:25.160-04:00Apnea Monitor<span class="Apple-style-span" style="font-size: large;">Since Macayla started having grand mal seizures that stopped her breathing, we started using an apnea monitor. It measures heart and respiratory rates through two (sometimes three) leads that attach to Macayla's torso. If her rates go too high or low, it will alarm. So far, we have found that most of the alarms are false, but they are not too frequent as long as we hook her up correctly. The most frequent false alarm has been a "loose connection" when she manages to rub one of the leads off. There is a soft, velcro belt that goes around her chest where the leads are and that helps keep them in place. Macayla is still squirmy enough to rub the leads off. It has alarmed a couple of times for apnea and low heart rate, but nothing was wrong. Her heart rate drops during deep sleep sometimes and this morning a yawn set off the apnea alarm. </span><div><span class="Apple-style-span" style="font-size: 18px;"><br /></span></div><div><span class="Apple-style-span" style="font-size: 18px;">Another option we considered was a pulse/ox monitor where the lead is attached to a finger, toe or even around the foot. It measures their pulse and oxygen saturation. If either gets out of range, it will alarm. Macayla moves her feet and hands too much for one of those to work at night, and we question if we could get a good reading on her considering the poor circulation in her hands and feet. Overall, we have been pleased and even relieved by the apnea monitor. It allows us to leave Macayla in her room knowing that if a seizure starts we will be aware of it. So far it has provided peace of mind and only a few false alarms.</span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-74288223871313108122008-06-17T09:09:00.004-04:002008-06-17T09:26:50.890-04:00Grand Mal Seizures - Need Help and InformationMacayla had three, maybe four, grand mal seizures recently. It was the first she has ever had. They all happened over a two hour period and we gave her Diastat (valium medication given rectally) and it stopped it. Macayla stopped breathing and turned gray. It was scary. But the Diastat worked exactly the way it should. In less than three minutes she was asleep and the seizures stopped. We have no experience with grand mals and Macayla is immobile so she doesn't seem to jerk as violently as I expected her too. Her eyes just started rolling in circles and her head slowly and rhythmically shook back and forth in the "no" gesture. Her chin moved up and down rhythmically and she stopped breathing. Her arms and legs twitched slightly. I want to learn more from those families that deal with grand mals all the time. I feel very unprepared for these types of seizures and it may be something you cannot prepare for. If anyone has anything to offer, please let us know. Thank you.<div>Doctors prepared us for the day that Macayla may have big seizures and die or that her airway would become too floppy to remain open and she would go into respiratory arrest. We have talked a lot about that, but nothing prepares you for the real thing. Macayla's grand mals could have been much more severe, but just the 45 seconds she stopped breathing each time was tough enough to watch. We have a DNR (Do Not Resuscitate order) on Macayla because our decision was not to repeatedly intubate and extubate when the end comes because once you start you still have to decide when to stop. Intubating does not change the progression of the disease or its outcome, so we decided we did not want to put Macayla through that repeatedly. However, watching her not being able to breathe was the hardest thing I've had to do and your first response is to call 911. End of life decisions are tough and following through with those decisions are even tougher, now matter which way a family decides to go. </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4679199442329184774.post-33285163270658942632008-06-17T08:52:00.003-04:002008-06-17T09:09:19.675-04:00DecompressionWe recently got a phone call from a family who was struggling with decompressing their child through the feeding tube. I would imagine that most families find little tricks that work best for their child, but in hopes it will help more people, I can share what works for us. We have found that most pediatric surgery offices do little to train their patients and their families with their new feeding tubes. So, with Macayla, we have worked with a Genie, a Bard Button, and now a Mic-Key button. Each has its own advantages. We love the Genie's design, but changing it is painful. The Bard Button was a leaking disaster for us but it is very flush to the skin. The Mic-Key is great because it can be changed out at home with little discomfort and the connectors lock on. There is also an extra port on the connector to push meds through without having to disconnect the feeding pump. It does stick up above the skin more than a Genie or Bard Button.<div>As far as decompression, we hook a longer connector to her (24 inch) with a 60 cc slip-tip syringe connected to it without its plunger. We lean her back in her chair or lay her back in the bed near the edge. Then we hold the syringe down below her to let gravity take over and draw everything out of the stomach. I do tilt the syringe over enough to help flow but not so much that fluids would spill out of it. Sometimes it helps to have a cup to pour excess in if necessary. However, we have always been advised by our doctors and nutritionist to never dump the fluids that come out because they are much needed electrolytes. We put all the fluids back in. The only exception to this is if we get a bunch of blood out. Typically, if the syringe is getting full and there seems to be more air, I will sit Macayla up and then let the fluid run back in. Then I will tilt her back again and once again lower the syringe down below her to decompress again. Letting the fluids run back in while she is sitting up seems to help reposition the air closer to the tube. We sometimes push on Macayla's stomach gently to assist the air out. We point the open end of the syringe away from us as Macayla has sneezed before during decompression and it turns the syringe into a mini-canon that fires stomach contents! Yeah, it's gross. We have found that Macayla needs to be decompressed before every feeding and sometimes between feedings.</div>Unknownnoreply@blogger.com0