Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Thanks for caring. I am upset, but on the other hand as I told Dr. Whiteman, what really matters to me is that the girls get adequate care for their conditions, diagnosis or not, so as long as they continue to get treated, I can live with the assumed Mito diagnosis. It is sad to not get the chance to see if her biopsy would shed more light on the girls' condition though. I hope you are able to find a solution for your son's needs while shopping. I have been struggling with the Mayo trips with Asenath as when we have to take the bus she cannot use her wheelchair, but needs to use the available wheelchairs they have at Mayo. They don't lean back and so when Asenath is really exhausted, which is happening more frequently at Mayo, she has to sleep in an upright wheelchair and is so drained within a day after arriving to Mayo. The RMH doesn't offer wheelchair accessible buses to take children in wheelchairs to Mayo. If you want a ride that allows wheelchairs, I was told we would have to pay for it!!! It's free for those not in wheelchairs, but not for those in them. I am frustrated with that as it seems that Asenath just doesn't have as much energy lately as she used to and she requests the wheelchair to go anywhere in the RMH, let alone going on and off the buses and etc. She is way too heavy to carry anymore as well so we like you are in a dilema that needs a solution. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Pediatric s Does anyone know if they make walkers for children with a seat? I'm thinking of something similar to the fancy adult kind with the handbrakes and the seat with the basket underneath. I want one like that for Devin. It's either that, or he goes in a wheelchair to get around the grocery and other stores with us. He can make it most of the way through super walmart, but then by the time we have to do our one last stop at Aldi (small inexpensive grocery store), he's laying on the floor at the cash register. I suppose I could go later in my day and do Aldi first, then super walmart, and he could stay in the riding cart all the way to the van. That's a thought. I was just thinking that pushing him in the stroller and pushing a cart is getting difficult, (his autistic brother has to push either one, and it's mission impossible!) and he can still walk just fine, (thanks to the AFOs) but he can't go long in duration. What do you do for your children in such situations? Any ideas? And Darla, I'm just sick about that muscle biopsy being gone! I went to bed and prayed so hard last night that you would come up with an acceptable solution to this disaster! You are handling it very well though! e *Ü* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Thanks for caring. I am upset, but on the other hand as I told Dr. Whiteman, what really matters to me is that the girls get adequate care for their conditions, diagnosis or not, so as long as they continue to get treated, I can live with the assumed Mito diagnosis. It is sad to not get the chance to see if her biopsy would shed more light on the girls' condition though. I hope you are able to find a solution for your son's needs while shopping. I have been struggling with the Mayo trips with Asenath as when we have to take the bus she cannot use her wheelchair, but needs to use the available wheelchairs they have at Mayo. They don't lean back and so when Asenath is really exhausted, which is happening more frequently at Mayo, she has to sleep in an upright wheelchair and is so drained within a day after arriving to Mayo. The RMH doesn't offer wheelchair accessible buses to take children in wheelchairs to Mayo. If you want a ride that allows wheelchairs, I was told we would have to pay for it!!! It's free for those not in wheelchairs, but not for those in them. I am frustrated with that as it seems that Asenath just doesn't have as much energy lately as she used to and she requests the wheelchair to go anywhere in the RMH, let alone going on and off the buses and etc. She is way too heavy to carry anymore as well so we like you are in a dilema that needs a solution. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Pediatric s Does anyone know if they make walkers for children with a seat? I'm thinking of something similar to the fancy adult kind with the handbrakes and the seat with the basket underneath. I want one like that for Devin. It's either that, or he goes in a wheelchair to get around the grocery and other stores with us. He can make it most of the way through super walmart, but then by the time we have to do our one last stop at Aldi (small inexpensive grocery store), he's laying on the floor at the cash register. I suppose I could go later in my day and do Aldi first, then super walmart, and he could stay in the riding cart all the way to the van. That's a thought. I was just thinking that pushing him in the stroller and pushing a cart is getting difficult, (his autistic brother has to push either one, and it's mission impossible!) and he can still walk just fine, (thanks to the AFOs) but he can't go long in duration. What do you do for your children in such situations? Any ideas? And Darla, I'm just sick about that muscle biopsy being gone! I went to bed and prayed so hard last night that you would come up with an acceptable solution to this disaster! You are handling it very well though! e *Ü* Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.