tag:blogger.com,1999:blog-76214746990725735202024-03-04T23:57:34.271-08:00Family Living with Cerebral PalsyAmanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.comBlogger58125tag:blogger.com,1999:blog-7621474699072573520.post-80089975100987697882014-03-19T22:10:00.001-07:002014-03-19T22:10:06.395-07:00Winter 2013-2014 PneumoniaJames has had a fairly healthy winter. Unfortunately a few weeks ago he came down with pneumonia. After 2 days of fatigue, fever and nebulizer treatments I took him in to the doctor. I honestly thought he was going to be admitted to the hospital, but he lucked out. His O2 sats were a little low at 93% but he was holding steady there. We increased his nebulizer treatments, re-started his asthma medications, started an antibiotic and a steroid. After 3 more days he finally was feeling better. We were fortunate enough to use Sanford's new Same Day in which you get to see your own physician on the day you call. I don't doubt other physicians but when it comes to James it really helps to streamline his care when we see his own physician. Normally I think most physicians would've asked for and x-ray and maybe labs but our pediatrician decided that no matter what the x-ray would've shown he was going to treat it aggressively anyway. James has a poor history of doing a very good job of compensating during illnesses. Which is good, but unfortunately at some point he can't compensate anymore and that's when things go south very quickly.
We went for a follow-up a week after and the pneumonia was gone, but unfortunately his O2 sats were still only at 92%. We did an x-ray (which is not the easiest experience at Sanford SW Peds). The pneumonia is gone for sure but he saw a lot of inflammation which means that James' asthma isn't well controlled. We increased his Pulmicort and go back in a month for another check. At that same check-up we'll be checking James' weight. I think at long last our years of avoiding a G-Tube are over. If James' shows no weight gain by that appointment, it's time for a G-tube. Andy and I have mixed feelings on it, but we'll do anything that James needs. Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com1tag:blogger.com,1999:blog-7621474699072573520.post-27120995749072737052014-01-29T23:16:00.000-08:002014-01-29T23:16:24.340-08:00Christmas Pictures<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4lH5IZUNM8ZIx3loOA_xnMF53VI_ckDWTXW1IGW_Fpx9s50yB2PDik1BL3iT5rFLfH6FoMuuOsVfmzyw6RzgRXfJT_NUHFAiJWflzX1PVNtzN0pQiLlVWQDMemPWhqIOEp9Le_AKs3zFq/s1600/DSC_0082.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4lH5IZUNM8ZIx3loOA_xnMF53VI_ckDWTXW1IGW_Fpx9s50yB2PDik1BL3iT5rFLfH6FoMuuOsVfmzyw6RzgRXfJT_NUHFAiJWflzX1PVNtzN0pQiLlVWQDMemPWhqIOEp9Le_AKs3zFq/s320/DSC_0082.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggCSM_c_LNuq_gv77CSZHU_5eRxNGGGmv5wC2V_m-4JtOXpCi_jiQ8OJSpmaK8wpd628QwV3nnQMAHSQ0ptDVOJDdKVKfYVLx_SGA9KtmzIAcF5mgfXH3cXN8MooOVuBmG58pP-af-2vOA/s1600/DSC_0087.JPG" imageanchor="1" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjti1Acro973xUd-BBoahK6yFJYG32LaQQ6WyRJOtCKGh1ioatp5V6jztuJY5chTPvaKWWEqh2ZFTzmSWTQ0tPiglAxg9g3gqNVGN5G_h05stTic4Y3ns3yjvrtg3qx_AjeMiaUcS06tmN9/s320/DSC_0249.JPG" /></a></div>Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-73608264018888813372014-01-28T19:48:00.001-08:002014-01-28T19:50:26.989-08:00Driving, A Wedding and some ABRI'm obviously WAAAAYYYY behind on this post. But here's a quick run-down of our summer vacation.
We left on a Thursday night. I got off work a little early, but we only got as far as Watertown, SD. That left us with driving all the way to Clarksville, TN the next day. We drove straight south along the border of Iowa, Nebraska, and Missouri and then over to Illionois and across Kentucky all in one day. Surprising our kids were amazing in the car. Having the DVD player in the van is a lifesaver for sure. The kids sure do travel well.
Saturday we had some fun in the pool before getting ready for my cousin Troy's wedding. It was a great ceremony and we headed over to the reception that had an amazing view! The kids had loads of fun dancing and seeing their cousins. It was also a great chance for Andy and I to visit with some of my relatives that we don't see very often.
Sunday we went to church but unfortunately had to get back on the road again right away.
We drove to southern Georgia and stayed there a night. Monday we only had a few hours of driving and so we decided to stop at Daytona Beach to see the ocean! Elliot loved all the sand but wanted NOTHING to do with the water. James liked it all. James and I hung out in the sand and a little down by the water-but mostly I just sat on the sand and James laid in my lap and we played in the sand. I thought he might get upset because the sun was so bright but he did awesome. I tried my best to remember to pack everything. Well, I forgot floaties for the water, sunscreen, beach towels and hats!! We remembered Elliot's sunglasses and took a short walk to buy some sunscreen and beach towels...but still forgot to get a hat for James.He got to put his feet in the water and he got his legs covered with sand. Elliot only wanted to make a sandcastle. He also went on a walk with Dad down the beach to look for shells-no luck there. About the time we were leaving it started to rain so we finished up our drive to Ft. Lauderdale where we were headed for some ABR training.
ABR training went well. This was Andy's first time. He got to meet the trainers and ask all the questions he'd been asking me for months (but wouldn't believe me when I gave him answers). We learned 6 new exercises. Wow-that's a lot of exercises. Our target is to spend 2 hours a day on James but we're finding it difficult. I am the one who is the most comfortable with ABR and the pushing drive behind it...but I don't see James :( The ABR time I do spend with him is while he's sleeping after I get home from work. We spent 2 days doing ABR and got in a little time in the pool while it wasn't raining. It rained, and I mean rained, all day both days. There were a few flash flood warnings around us. Unfortunately we weren't able to get out and see much because of the rain but just relaxing in the pool and hotel room was ok too.
After ABR we headed back to ND. We made it in 2 days! We drove as far as Clarksville, TN the first night and then the rest of the way home the second day. It felt good to be home.Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-6215722617233697722014-01-26T22:14:00.000-08:002014-01-28T19:51:19.483-08:00Halloween 2013Once again Halloween (and a couple other holidays...) has come and gone and I haven't posted yet. This year the boys had fun again. I chose a fireman costume for James that I found at Costco. It was a great quality. The fabric was thick and it was made really well. I don't think even Elliot could ruin it. James wore his costume to school and loved it! His teacher told me that when they put him in his stander they put him in front of a mirror and he just couldn't stop looking at himself! HAHA! In the afternoon I was able to go to James' school and paint pumpkins with him in his "inclusion" classroom. James was way too busy watching all of his friends and did absolutely no painting. It was fun to see his teachers and classmates interact with him. His classmates and teachers really do include him and love seeing him!
Elliot was the Red Megaforce Power Ranger this year. He talked about being Ironman (again) for months but when we went to buy his costume (also at Costco) he insisted on the Power Ranger. He loved it and later I found that I had extra costumes in the basement that someone must've given us last year (thanks whoever gave us those! I have no idea who it was!). Wouldn't you know that one of the costumes I already had was a Red Power Ranger! Elliot made Daddy put on the mask and be a Power Ranger with him for awhile.
We chose to go to the mall again this year for Trick-or-Treating. It's easiest with James because there are no steps etc and we don't have to worry about that stuff. He wasn't into it much but Elliot loved pointing out all the other costumes and getting candy. James, as always, loved watching all the other kids running around and laughing. After the mall we took a short trip to see my co-workers. On the way home James and I dropped Daddy and Elliot off a couple blocks from home so that Elliot could do some more trick-or-treating. He loved going the houses and seeing all the decorations! All in all it was a pretty successful Halloween. Maybe James will be more into it next year...or maybe he and Mom will just hang out at home in costumes :)
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCN8yLmvAQOA8JrtDv3H2XX9IGFJTfWsIlGMS0tdwmcQholBgR9SaIsGC1qE7WGI-JJzcSucegpC2wHJRzQvcj5_Ri2cY1GBFT3UULVgy2emdbxwTFnetXR4zEKtE7Cvbftl19QCv5m9Ja/s1600/DSC_0861.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCN8yLmvAQOA8JrtDv3H2XX9IGFJTfWsIlGMS0tdwmcQholBgR9SaIsGC1qE7WGI-JJzcSucegpC2wHJRzQvcj5_Ri2cY1GBFT3UULVgy2emdbxwTFnetXR4zEKtE7Cvbftl19QCv5m9Ja/s320/DSC_0861.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1gfZroGKvs2pOamKJYdsupvMl43lok_1sS-tr6ZlYN53f4zK07Wgv0cte9kyqN82xHv0QxuYCrmp3Eqf1WTr6wg_VrZFgMWKWeuihGgY8uzlcrz2g2Px0_UdGJX4SYPoHE8qoweDG0S1F/s1600/DSC_0838.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1gfZroGKvs2pOamKJYdsupvMl43lok_1sS-tr6ZlYN53f4zK07Wgv0cte9kyqN82xHv0QxuYCrmp3Eqf1WTr6wg_VrZFgMWKWeuihGgY8uzlcrz2g2Px0_UdGJX4SYPoHE8qoweDG0S1F/s320/DSC_0838.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi36Z5AVJqjeorAWN9rqdNAnr3Fv8psjE-Vc9K766W-YGg-QRenFmZbvPBZ3uXCDhyphenhyphenNOJjXNf37viqNlnCet6yMYL8tzjdlag2lipOKCUm3EXT6_cufjxj7-iMNTWeOHAMYBPrXA9f46Eg3/s1600/DSC_0850.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi36Z5AVJqjeorAWN9rqdNAnr3Fv8psjE-Vc9K766W-YGg-QRenFmZbvPBZ3uXCDhyphenhyphenNOJjXNf37viqNlnCet6yMYL8tzjdlag2lipOKCUm3EXT6_cufjxj7-iMNTWeOHAMYBPrXA9f46Eg3/s320/DSC_0850.JPG" /></a>Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-15240187415611019902013-09-25T21:15:00.000-07:002013-09-25T21:15:38.548-07:00All Grown UpSo I'm a bit late with this post. My tiny baby boy is all grown up and goes to all day long Kindergarten. We were able to meet most of the people that are involved in James' school day on the day before school. We met them all and taught them all about James and what he likes and dislikes. I found that so helpful! I think they did too. For the first couple weeks there were lots of phone calls to mom to find out even more about James. He is adjusting very well to all day school. The first couple days were the toughest. James gets on the bus at 7am every morning and gets home at 2:30pm. That's a long day for a little boy-especially one who is so busy at school. His day is pretty jam-packed at school. He spends the majority of his time in the Special Education classroom but gets integrated into his own classroom for group times like snack, phy-ed, art etc. He is loving the group reading time in his classroom and his teacher reports to me that the students that sit in his pod with him have become very protective of him! In the morning before school starts he is in the gym with all the other kids and his para and it sounds like all the kids love to hang around James and help him and push his chair. Other things on his agenda each week are 100 minutes of speech therapy, 60 minutes of therapy with the deaf and hard of hearing services, 60 minutes of Occupational Therapy, 60 minutes of Physical Therapy, and 60 minutes of Adaptive Phy-Ed. That's all in addition to his regular school day in the classroom/special ed classroom! Last week his teacher reported to me that he identified the sounds for the letters "F" "M" and "P" He is still strongly motivated by the computer and iPad and is using those frequently to complete his schoolwork. His team of teachers is working really hard to find the best ways for James to communicate his knowledge and wants to us. Just today they had an evaluation with the assistive technology person for the school district. They got a switch to help James use his iPad more effectivly and are exploring other options-even having an evaluation for an eye gaze computer system for him to use!!! Wow! I can't believe how much has happened for James in other a couple of short weeks at school. I can't wait to see what else he'll teach us this year!<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGz1hKVwLNSmAqnQuD4SXC_1wcP2IfIFMRJadytei9orVMcmPv7I3HWWFx_bkhQaKK50OQR7wWTvHaNYANnInyQjl9QgJAM7Gyk-9HV1VaH_G5RqSsb7EV0JmMyW22cCybou_CAPXpC5B9/s640/blogger-image-588050682.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGz1hKVwLNSmAqnQuD4SXC_1wcP2IfIFMRJadytei9orVMcmPv7I3HWWFx_bkhQaKK50OQR7wWTvHaNYANnInyQjl9QgJAM7Gyk-9HV1VaH_G5RqSsb7EV0JmMyW22cCybou_CAPXpC5B9/s640/blogger-image-588050682.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY9lf-IHQRs3_UO8Qoxfq6miRBwdruAc7AApOg8RhMB2iXYR5MM_Hmntg3uS5yUmObhyH2r4o-4FzbIKxBweza1WZx6YglyZCZVkRgRhgr60jxNG8kiSlTR0RhYs8gFMHWyp6QJp3zhR4w/s640/blogger-image--1028810526.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY9lf-IHQRs3_UO8Qoxfq6miRBwdruAc7AApOg8RhMB2iXYR5MM_Hmntg3uS5yUmObhyH2r4o-4FzbIKxBweza1WZx6YglyZCZVkRgRhgr60jxNG8kiSlTR0RhYs8gFMHWyp6QJp3zhR4w/s640/blogger-image--1028810526.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWemaTWoKy9vcMpNTi_mSog6MBZpgersROI_HOB-MQeq4DQmX8tynYaFWt9yQyD_hrLDzQJ0KE98FuFXfBzu3kh7E7vt9r94FLypDUKvNMybMoWGRqits0sfZb7zWornbJzfy90tOnaed8/s640/blogger-image-1798948493.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWemaTWoKy9vcMpNTi_mSog6MBZpgersROI_HOB-MQeq4DQmX8tynYaFWt9yQyD_hrLDzQJ0KE98FuFXfBzu3kh7E7vt9r94FLypDUKvNMybMoWGRqits0sfZb7zWornbJzfy90tOnaed8/s640/blogger-image-1798948493.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG5sSDlDCHyQA6PcnYvL-ELS31YNZRFdDiyBz6IjOhrajkBp2Fzblr79pVyfuFD3JQ6JA0RtFGkTlL9GJasuFD4NwfeVIlo-qzJGX6y2JAXhbs78mlXXAds6qK7jYa3iCAHnx9LbFdJQJQ/s640/blogger-image--1822703565.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG5sSDlDCHyQA6PcnYvL-ELS31YNZRFdDiyBz6IjOhrajkBp2Fzblr79pVyfuFD3JQ6JA0RtFGkTlL9GJasuFD4NwfeVIlo-qzJGX6y2JAXhbs78mlXXAds6qK7jYa3iCAHnx9LbFdJQJQ/s640/blogger-image--1822703565.jpg"></a></div>Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-27327621429141790852013-08-12T06:37:00.001-07:002013-08-12T06:37:41.438-07:00Safety FirstTragedy struck a town close to us last week that reminded me of the dangers of having a child with special needs that I'd rather forget. An 11-year old autistic boy wandered from his home and was found the next day in the river. How tragic. I cannot imagine the grief his family is experiencing. When I heard the news I wanted to break down and cry.<br />
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While I know that right now this isn't something that could happen to James, it reminds me of how vulnerable he really is. He can't scream for help, he can't get up and walk away from danger, he can't stop himself from falling off his bed. I think as a special needs parent I'd rather forget these things. We have so much going on already from school, to therapy to feeding that it's easy to forget, or take a passive approach, to safety. <br />
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Since James is not mobile that saves us a lot of headaches when it comes to safety. We know he isn't going to wander off in the neighborhood or fall down the stairs. But there are some areas that I know I'm lacking in and I can no longer ignore. The biggest one I can think of is James' bed. When we moved into our new house several months ago we bought the boys bunk beds. I knew that when we put James in a regular twin bed that I was going to need to buy a railing so he wouldn't fall off. But I haven't done it yet. Moving James into a twin bed was a safety decision in and of itself. He was getting his arms and legs caught in the railings of his crib and I was afraid he would break a bone. So to the big boy bed we went. Most of the time he's ok in his bed. But he has fallen out and he has gotten his hands stuck underneath the mattress and scraped up his knuckles. This week I am buying a railing for his bed. <br />
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Another recent thing that's popped up is James' safety on our couch. He spends a good amount of time lying down on our loveseat-that's James' spot. I've never thought much about James falling off-he can't roll, so he can't fall off. Wrong. Twice last week he fell off the couch. He wasn't hurt either time, in fact the second time it happened he was just content to be on the floor. I need to make sure I'm closer by when he's on the couch now.<br />
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The last big safety issue I can think of is James' special tomato chair. It has a harness-so it should be safe right? Wrong. We don't use the entire harness. After we moved to our house I couldn't find the pelvic portion of the harness so we weren't using it. Well James has gotten pretty tall and when he arches his back (when he's excited mostly) he pushes on the floor with his feet and is close to pushing himself out of his chair-while it's not a big deal and it wouldn't be a fall very far, it still isn't safe. <br />
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All in all every parent has to worry about the safety of their kids. I worry about Elliot getting out the front door/garage door on his own and rushing to the street. But those of us with special needs children need to remember that our children are much more vulnerable and we need to be more vigilant and not forget or get passive about the safety of our children. Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-40843493926451459372013-07-17T09:49:00.001-07:002013-07-17T09:49:39.888-07:00Pictures Now, Words to Follow<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOWYdX7rT0fJvlQvT2NFUiX0o9I1a53qvG6zJMmsKLdV7QhGhfIpRfO1t6Ea0WM22zBIDdTFX1AbJ7uMGihGWTvCIVVTLS8zEEy6gfbZj6Hqre0TlUmGVdfb5-rdi3LiGyFATrC2bL5V5c/s640/blogger-image-745961899.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOWYdX7rT0fJvlQvT2NFUiX0o9I1a53qvG6zJMmsKLdV7QhGhfIpRfO1t6Ea0WM22zBIDdTFX1AbJ7uMGihGWTvCIVVTLS8zEEy6gfbZj6Hqre0TlUmGVdfb5-rdi3LiGyFATrC2bL5V5c/s640/blogger-image-745961899.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivkpXEbf1RIV2U03E9Z6so4Ot9vD7h87wHT96SBho6UioifzAwkQT1I7e6deAkZhGutFuNOARFvIx7P8W_4Odt3QKAlqOpSg2fRNQGDI-XnKURAprKrsNSvo_9IAOxSfeRyU6jjvrMtD99/s640/blogger-image-1856386780.jpg" imageanchor="1" style="margin-left: 1em; 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I had to work again this year. We slept in-which Andy and I both needed. I usually luck out on morning when Andy is home and doesn't have to work. A typical morning has Elliot coming into our room telling us it's time to get up. "The sun is Up" is what he always says, and then he pesters me until I wake up. However, if Andy is there and Elliot notices he skips right over me and heads straight to Andy and tells him it's time to play or something like that. I guess I know where I stand. I'm ok with it though-I generally get an extra hour or so sleep because of it. <br>
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After sleeping we just did little things around the house while the kids watched tv. We took a walk to the park that's close to us. James and Elliot both LOVE the merry-go-round. The kids always love going to the park to play and behave really well. I was a little hot and not enjoying the muggy air so we finished up our walk and headed home. Once home I had to get ready to go to work. Andy was good enough to cook supper on the grill and bring me some at work. Once back at home the kids and Andy made s'mores and now that all Elliot wants to eat. Having a low-key Independence Day was ok for me this year-especially since we're gearing up for a long trip next week.Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com1tag:blogger.com,1999:blog-7621474699072573520.post-41518762927632770392013-06-27T18:33:00.000-07:002013-06-27T18:33:26.772-07:00Trying to Catch UpI am all over the place lately. I just can't seem to catch up on the blog. Every time I get a chance to write a post I think of 4 more posts I should write!<br />
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Before we went to Philadelphia James and Elliot and I headed to Rochester for another check-up for James' cochlear implant. Everything was good and he improved on their little questionnaire. He's around the hearing ability of a 9 month old. So it's great that we're still seeing improvement. As with all things with James we aren't completely sure where he is because he can't always tell us! We'll go back for another visit in August before school starts.<br />
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School has since ended and started again for James. The last day of school was so very bittersweet. Eagles Education Center has been pretty good to/for James. The teachers and kids all love James and they all know him! They love to help him and talk to him and give him hugs! It's even more fun to see his classmates out and about in town! They spot him right away and run right over. That sure makes a momma feel good. The staff at Eagles has been amazing over the past 2 years. Everyone from the secretary, to the principle to the therapists and paras love him. It was pretty fun to drop him off and pick him up every day and have soo many people talk to him and get excited for him to be there. The therapists and his teachers have seen the amazing potential in James. They want to see that potential reached and went above and beyond to connect with his future teachers for next year. We were very sad to say good bye to Eagles Education Center. James started summer school a couple of weeks ago at the Lodoen Center in West Fargo. I had a mini-panic attack about sending him that morning. I was worried. All new teachers. They don't know James-he doesn't know them. I was very hesitant, but of course I got a good report and James had a good week at school. Now he's off for 3 weeks and will go back for 2 more weeks. <br />
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We're gearing up for our trip to Tennessee and Florida in a couple of weeks. It actually worked out pretty fabulous. My cousing Troy is getting married in TN and the dates are perfect for us to stop by the wedding on our way to FL for our next ABR session! Andy will get his first ABR training and I'm pretty excited to have 2 of us to work on James. It gets pretty hectic when I try to do all the day time things that have to be done and ABR, especially when James is in school 1/2 days. Andy will be taking over the majority of ABR in the fall when James starts full days at school. I'm not really looking forward to Kindergarten. James will be gone all day and I'll barely get to see him. Elliot is also going to be starting PreSchool in the fall. Whatever will I do with my time?! I'm sure that there will always be something to do. <br />
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We are settling pretty nicely into our new house. We love all the space we have! Our backyard is fenced and has a playgroud, so Elliot is always wanting to go outside to swing. We've met the neighbors to our East and they have 2 little girls Elliot's age and a baby. Elliot spots the girls outside and he immediately has to go out to play with them. It's great for him to have someone close by to play with (besides mom and dad). <br />
Unfortunately our basement has been getting wet in our family room. It's been very frustrating as no-one ha ever had moisture problems in that house before. 4 times now we've had to stay up late and vaccuum all the water up, pull the carpet back and get it all dried out. We're having someone come out to look and see what the problem sometime in th next week. Let's pray that its not too expensive.<br />
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We've been working on getting James a swing for the swingset and a ramp into the house. It's a process as always but it's going well and hopefully we'll get them before the end of summer. Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-1867924472599254252013-06-21T23:17:00.000-07:002013-06-21T23:17:26.408-07:00ABR Progress ReportSo after my mistake back in February, James and I were able to head to Philadelphia for another round of ABR training. I was pretty excited for this one since we got James's first progress report. The progress report is good! I know that we've already seen changes in his head and trunk control but it was really nice to see the changes in the pictures. I'm still amazed that I'm doing to him! The trainers stressed the importance of continuing on this path and that while he is young I need to really get some good time in to make the changes to his body. <br />
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We learned 6 new exercises again. I'm feeling more comfortable with learning new exercises because now I've gotten the basic techniques down and it's just a matter and refreshing those techniques and applying them in a new area. This go round we'll be working on his neck pit (spot at the bottom of your head that meets your neck). Most people have an indentation there and James doesn't. We'll also work on upper back again and middle back along with some shape changes in his head and working on his thighs! I'm the most excited about that. It was actually requested by our physical rehabilitation doctor. I was a little nervous to approach the subject of alternative therapies with her but she was awesome about it! She was very open and even suggested a couple! She asked to see if they had something to help with the tightness in his hamstrings. Last August we did botox to loosen them up and it helped some but of course it wears off. Going through botox injections with James is pretty difficult. They give him the gas to calm you and kinda gives you amnesia but he still fights and gets anxiety with all those doctors and nurses around. I'd rather not do botox unless we have to anymore. <br />
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We'll actually be going to another training session in Florida in July. The sessions are pretty close together but that's my fault from missing February's sessions. I'm a little nervous for that session because Andy is going to be learning and pretty much taking over ABR with James. In the fall James will be in school all day and I won't have time with him to do ABR. So Andy is gonna take over and do it in the evening.Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-7890063399454337152013-05-11T17:34:00.002-07:002013-05-11T17:34:21.441-07:00A Single Word Made Me CryA fw weeks ago the boys and I headed to Rochester and the Mayo Clinic for another check-up with James' cochlear implant. The Friday before we went I was able to have a meeting with his current teachers and therapists and the deaf and hard of hearing teacher from the West Fargo School District. We had decided when we moved that we wanted to keep James in his current school and class until the end of the year. We figured that moving him to a new preschool and then again to a new school in the fall for Kindergarten that it would be too much disruption and learning for both James and teachers to get much productivity. It's worked well and we're now working on getting his new teachers and therapists ready for him. Anyway, this meeting was to talk with the new teacher and let her know James abilities and needs. <br />
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While we were having this meeting his speech therapist from his current school gave me the most AMAZING news in the world. That week during school while they were working with James on Yes and No-after the therapist modeled the word "yes" for him he SAID THE WORD "YEA" ..... TWICE...ON PURPOSE! I absolutely couldn't believe it! I've cried several times over. Of course we haven't been able to get him to do it again yet-but how awesome that he was able to do it that one time! I've honestly never even really thought what James' life would be like if he could speak. I can't even imagine the possibilities that would open up for him. I've been pretty cautious with myself and don't try to think about stuff like that too much. We just take one day at a time and go from there.<br />
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So in Rochester not much has changed. They were happy with James' progress and re-programmed his mapping. He's had about 8 months of "hearing" growth in about 6 months time-so we're on track and the implant has helped! He's been a little cranky lately when we put it on in the mornings. I'm hoping it isn't beacuse of the sound being too loud. We'll have to watch him closely and hopefully he'll get used to it. In the meantime I'm not going to mess around too much with his growing programs. His growing programs are where I can slowly increase the amount of sound and the loudness of the sound. Each time we go to Rochester they program his implant with 3 growing programs and we slowly work our way through them. I usually don't push him too hard with this because I don't want him to be afraid of the implant or dislike it. We take it really slow and wait to move up until we know that he's completely comfortable where he's at currently. We'll go back to Rochester again in August before school starts and after that appointment we can start only going every 6 months or so! I'll be excited to not be traveling so much with the boys.Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-61031094260696152352013-04-28T12:30:00.001-07:002013-04-28T12:30:24.674-07:00Hoppy Birthday James!James' birthday was just a few days after Easter this year so we celebrated on Easter Sunday. It was nothing fancy or huge but a good relaxing day. We started of course by going to church. The boys behaved themselves really well-especially considering we weren't even inside the church! Since we moved we started going to a new church and it's packed every Sunday! So Easter Sunday they had it all set up for people to sit in the fellowship hall and watch church through Skype! My parents and all my younger siblings came to our place to celebrate James' birthday. My brother Nathan and his family were planning to come but poor Lucas got sick a couple days before :( bummer. Guess we'll just have to arrange a play-date/weekend soon! We had lots of Mickey Mouse items for James! He still loves Mickey. The last couple of years we've gotten James an ice cream cake for his birthday-thinking that ice cream is something that he can eat-he wants nothing to do with ice cream. So this year we tried your traditional cupcakes. He was pretty interested in the Mickey on a stick-but that's as far as that went. <br />
Every year around this time I think back to the week that James was born and what whirlwind it was. It's amazing to think that this little boy is here with us. I never once thought that he was going to die. Never. But now that I think back, there were so many times that he fought to pull through. Statistics don't usually work in James' favor (I'll save that for another day). That being said, if he followed the mortality statistic like he follows the rest, he shouldn't be here. But he is. And I thank God for it every day! This little boy is so happy and smart. I get pretty excited to pick him up from school every day now because he is showing them how smart he is and finding ways to tell us! Hoppy 5th Birthday James!<br />
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Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-53507948861561539362013-03-17T17:17:00.004-07:002013-03-17T17:17:49.328-07:00Whoops! I'll never make that mistake again!In February James and I were supposed to head to Montreal for our 3rd session of ABR training. I had the trip planned, plane tickets purchased, hotel and rental car booked, days off of work, babysitters lined up for Elliot....We were ready. The Thursday-Sunday before we left I spent with some awesome ladies at a scrapbooking retreat that we go to each year. It was a great weekend of relaxing and doing whatever I felt like doing without having to worry about kids etc. I got quite a bit of scrapbooking done and I'm finally feeling like I can work on our family album and not just the kids' albums.<br />
So Sunday came along and Andy and the boys picked me up on Chippewa Falls, WI. They had spent the weekend at Andy's parents and visiting friends and family there. We got the Minneapolis and Andy dropped James and I off. We headed to the kiosk to get checked in and guess what I realized at that precise moment-the passport we have for James is just the card=only good for land and sea travel :( I was so mad at myself! Of course the people with the airline were very helpful and tried to get us as close to the border as possible, but there were too many unknowns for me. We didn't know for sure if we'd get a rental car-let alone one big enough for James' wheelchair, we didn't know if that border station was open 24 hours and it was going to be several hours of driving late at night in super unknown territory with an early start the next morning. So we decided to re-book our tickets and re-schedule ABR. Both Andy and I were pretty mad about it. Most expensive mistake I think I've ever made. But now we are set to go to ABR in Philadelphia at the end of April. The people at ABR have been really helpful and this week we'll be connecting via phone to answer questions we have and we'll keep trucking on until we get to go in April. <br />
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Hopefully I'll get a post up soon about our new house!!!<br />
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In the meantime we are selling Butterbraids and Puffins to help raise $$ to pay for the session fees for ABR. We are amazed at the results we've seen and can't wait to do more! Price for both Butterbraids and Puffins are 1 for $11 or 3 for $30. Butterbraid flavors are Apple, Blueberry Cream Cheese, Strawberry Cream Cheese, Bavarian Cream, Raspberry, Cinnamon, Caramel Rolls (9 count). Puffin flavors are Apple, Blueberry Cream Cheese, Strawberry Cream Cheese, Cinnamon, Caramel, Mozzarella, Nacho. Orders can be placed to emailing me at <a href="mailto:ajbuettner@hotmail.com">ajbuettner@hotmail.com</a>, message me on Facebook, or call me at 701-318-9938. We'll be taking orders until March 28 and delivery will be April 4th.<br />
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Also, if you're around the Fargo area on Easter we'll be celebrating James' 5th birthday!! Not too much is planned right now but I'm sure we'll have cake and ice cream and some lunch. <br />
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Here's a few pictures to hold you over! James and Elliot went to the dentist this week and neither of them had cavaties! James wasn't so sure about other people in his mouth-he even fights mom and dad when we brush his teeth and he does lots of biting during that too. Elliot cried at first, which got James upset-he hates when Elliot cries because he's scared. But we got Elliot settled and he did awesome!<br />
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<tr><td class="tr-caption" style="text-align: center;">Dentist checking everything out!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">a little hesitatnt, James crying for Elliot</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Daddy's boys for sure!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">watching curling with Uncle Uncle</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">No cavaties!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Moving!!</td></tr>
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Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-8862361926024513442013-03-08T00:10:00.001-08:002013-03-08T00:10:34.680-08:00Spread the Word to Stop the WordI'm a day late, but I figured late is better than never for this post.<br />
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Most people have used the "R" word out of context and not meaning harm to those who are mentally handicapped or disabled. I"ve done it myself. But that doesn't mean it isn't hurtful anyway. Most people are making fun of friends of family in fun by calling them retarded or by slamming their arm/wrist against their body. Guess what-those actions are my son. I have a son who can't control his movements and when I see someone imitating these motions that my beautiful boy makes in frustration-it hurts. Especially if its a friend or acquaintance. No matter who you are, it hurts but I guess I expect more of the people who are closer to me and my family.<br />
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So I guess I'm asking anyone who reads this to think twice before using the "R" word and to help their friends and family to quite using the word inappropriately!<br />
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<img alt="" src="http://www.r-word.org/uploadedImages/r-word/Resources/2013badge_180x150.jpg?n=3772" />Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-55042167095431486722013-02-04T20:27:00.001-08:002013-02-04T20:27:47.566-08:00Cochlear Check-upLast week on Monday James, Elliot and I went to Rochester for a check-up for James' cochlear implant. Sunday we drove down to Rochester in some not so great weather. It rained all the way until the Twin Citites and once we got there it turned to slush and snow making for some pretty bad roads. Monday morning our appointment was scheduled for 9am but had to be pushed back a little because one of our normal audiologists was sick. We didn't get pushed too far back though :). They checked out his device to make sure it was working correctly and checked his maps. Over the past 3 months I actually didn't change any of James' programs/growing programs. I was really hesitant to do this because he was still crying a fair amount when we put the implant on in the morning. I wasn't willing to increase the sound if he was giving me negative reactions. But I found out that instead of putting the device on his head and then turning it on, I should have been turning the device on and waiting a few seconds before placing the microphone piece on his head. oops :( Lesson learned. I've slowly been turning up his volume in program 1 now that I've figured that out and haven't had a negative reaction since. They people we work with at Mayo are so awesome. They are very tolerant of our ever busy Elliot and help to keep him busy with toys. When it comes time to put James in the sound booth, James, myself and Alice (one of the audiologists) go into the soundbooth and the other audiologist (the one who was sick this time-Melissa) and Elliot head into the control room and they keep Elliot busy in there with some quiet toys. This time when we put James into the sound booth he did really well. He is responding to voices wonderfully and now even at a softer level than before! Yay! He's responding to some sounds but not as much as voices-but they tell that that's typical. Our new project to work on is now tying sounds to objects-like saying cow and then "moo" to connect the two of them-using a picture always helps with James too. <br />
We also did a little questionairre that we had done before James was implanted. I don't remember doing it, but his score at that time was a 2-3. The score is pretty simple. They ask questions and each question you answer 'yes' to, adds a point. He's now scoring 7-8 which is right on track with a 3 month old. I was pretty happy about that since he's had it for 3 months. But then they showed me what other kids are doing after they're implanted and they score between 13-33. That was a little disheartening, but then I realized that some of these are kids implanted at a much younger age, they don't have cerebral palsy and they have much more consistent use than James does. That's something we'll have to work on. Part of James' inconsistent use comes from us doing ABR. Anytime James is lying on his left side-the implant won't stay on. So any of this ABR exercises that require him on his left are a no-go for the implant. He also doesn't keep it on anytime he's in the car or on the bus. James also for some reason takes his bottle better if we prop it for him while he's lying on his side on the couch-well just the way our living room is laid out right now this puts James laying on his left side to see the tv while he eats-and you guessed it, that means no implant while he's eating or if he's just lying on the couch. When we get James up and into his new Special Tomato chair, he does ok with keeping the implant on-but he can also manage to knock it off lots too. If you remember the microphone piece attaches to his head with a magnet and he's gotten pretty good at knocking it off on purpose, but sometimes it's just by accident and the way he moves his body. We've found a headband that came with his giant box of supplies that helps keep microphone on, and that has helped a tremendous amount-especially at school. So, I guess all in all, it was pretty successful, but mom and dad and James have lots of work to do.<br />
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Our latest family development-WE BOUGHT A HOUSE! We are super excited to be getting out of the apartment. It's not a terrible apartment, but apartment living doesn't exactly agree with us, or fit us. We are moving into a 4 bedroom 2 bathroom home in West Fargo with a heated garage, fenced in big backyard with a swingset, open floorplan, lots of storage and a hot tub. We are super excited and I think the kids will like all the room they'll have to play-inside and outside.We close on March 12-and we'll be super busy right up until then. In February James and I are heading back to Montreal for some more ABR training, I'll be going on my scrapbooking trip with my friends from WI, and of course we'll be busy working and going to appointments and packing our apartment up! I apologize in advance in case I don't keep you all updated! Hopefully you'll see and update about ABR and another with pictures of the new house! <br />
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<tr><td class="tr-caption" style="text-align: center;">Watching Wrestling-He LOVES it!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bedtime at the hotel in Rochester</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cheese!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cheering for the Vikings-somebody has to</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sitting in his Special Tomato chair in a great mood!</td></tr>
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Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com2tag:blogger.com,1999:blog-7621474699072573520.post-67168593912400681222013-01-20T03:23:00.000-08:002013-01-20T03:23:10.399-08:00We did it!I never thought I would say this-WE MET JAMES' WEIGHT GOAL! I took James to the physiatrists office yesterday just for his check-up (we go about every 6 months unless we have AFO problems) and lo and behold he weighed just over 30 lbs. I was shocked! I never thought he'd make it. I'm still actually a little hesitant to celebrate because I'm not sure it will last. A lot of times James gains some weight and within a couple months is back to where he was. Hopefully he can hold on to this weight-even if it does make it a little harder for me to carry him. <br />
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James came home from the hospital on New Year's Day. Great way to start the year. Of course I was feeling terrible with one of the awful illnesses that's been hitting everyone. Not sure if it was the same thing James had, but whatever it was, it was terrible. We followed up with the pediatrician and they were pretty happy with his recovery. His oxygen levels were still a little low (89-90ish) but they weren't too worried because he seemed to be symptom free and feeling better. Just to make sure though, he has a follow-up X-Ray in February to make sure his lungs are all clear and looking good. <br />
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There isn't a whole lot new on our homefront. This past weekend we headed to WI to celebrate Christmas with Andy's family and the kids had a good time. They love to see the animals and gets all sorts of attention. Elliot especially loves to play with his cousins. James was feeling great and did really good at opening his presents! Leave it to me to make the fun stuff double as therapy. It's was good practice for James though. Opening presents requires his to reach and grab and hold on to something and then to let go too. Slowly but surely he makes his way through his presents. Elliot on the other hand was just not that interested in opening his presents. He was too busy playing with all the toys that are at Grandma's house. It took a lot of convinving but eventually he opened all his presents.<br />
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Now it's time to clean house and do some ABR and get ready for another trip to Montreal for ABR. In Februay, I get to take a weekend and go scrapbooking with some friends in WI and then immediately after that James and I will board a plane and head to Montreal for our 3rd session for ABR. I'm mostly excited for this session beause they'll do an evaluation and within a month or so after we'll get his first progress report. I'm excited to see the pictures. We've been able to see the head control of James improve so much. I just hope that we're doing more work to his body than we realize.Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com1tag:blogger.com,1999:blog-7621474699072573520.post-46376411315619150872012-12-31T13:36:00.000-08:002012-12-31T13:50:35.232-08:00Christmas, Illness, Resolutions and FamilyWhere does the time go! Here it is December 31, 2012 and I'm still behind. This past year has been a busy year, but an amazing year for our family and James. The most recent development, that most of you probably know, is that James has been in the hospital since December 27. James hadn't been feeling well since a couple of days before Christmas. The Sunday before Christmas James was extremely constipated. We tried all the usual things and even progressed to suppositories but we had limited success. Monday, Chistmas Eve, he started a cough and by the time we were getting ready for midnight mass James was absolutely miserable. We took him to the ER and they gave him an enema and milk of magnesia to help with the constipation. A couple hours later he was successful but the next day he was still feeling pretty crappy. He wasn't too interested in opening presents and started running a fever about 99F. By the time Thursday came around and Tylenol wasn't helping I decided to take him in. His lungs sounded kinda crappy, but the x-ray didn't look too terrible. However, his oxygen saturation levels were in the 80s. They should be close to 100. So he was admitted to the Peds unit at Sanford Children's Hospital here in Fargo. They've mostly just been supporting him with oxygen but they also decided to give him some IV antibiotics. They think it's viral (the flu test was negative) but they like to cover all their bases. He's steadily been doing better. At this point the fever is gone and he's been on oxygen since midnight 12/31/12. They usually want them off oxgen for 24 hours before they discharge them, so hopefully tomorrow James can come home!! Let's keep our fingers crossed.<br />
With the month of December has come lots of traveling and busyness. Because of this, we've been slacking on our work with ABR. That takes me to my first New Year's Resolution (yes I'm doing them!). I want to get in more and more time with ABR and get the most out of this therapy that has been awesome for us and James so far. We'll be heading back to Montreal at the end of February for another session. January is a little busy for us too, but I'm determined to get in lots of hours.<br />
Of course I'm going to be cliche and another one of my resolutions is to lose weight. Since we moved to Fargo in April 2011 I've definately been putting on some weight and this coming fall I'm standing up in one of my best friend's wedding and now I've got the incentive-now I just need to get the get up and go.<br />
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<tr><td class="tr-caption" style="text-align: center;">Boys with mom and Santa gifts</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Opening Presents</td></tr>
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Grandma has the magic touch </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Auntie Julie got married 12/21/12</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Daddy and James napping on Christmas Eve</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Elliot likes to help James open his presents...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY35SkxKwLtY1uz1Ilbj-GFvm0YazeyHna0tSqOTMTvL5htAayEjRsFBSK8CyhQLA4FPiXryVaagf_AiCwnWH66l2teCEHnUKfv19JOCNvBMtznMOU6PKxfWJHlZVH11pbdjTifXBCZv6J/s1600/176.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY35SkxKwLtY1uz1Ilbj-GFvm0YazeyHna0tSqOTMTvL5htAayEjRsFBSK8CyhQLA4FPiXryVaagf_AiCwnWH66l2teCEHnUKfv19JOCNvBMtznMOU6PKxfWJHlZVH11pbdjTifXBCZv6J/s320/176.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Especially when it's stuff he wants!</td></tr>
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I think overall in 2013 our whole family is hoping to come together more and learn better how to help each other and not just get through every day, but enjoy it, and enjoy it as a family. Sometimes I think we get so wrapped in every day life of working, school, therapy, house chores etc that we forget we're a part of a family and we're supposed to be enjoying life ando ur ultimate goal is to help each other get to heaven. This next year I'd like to focus more on our family and God. We have lots of hopes and dreams for the future and I like to think that if we trust in God and if it's meant to be, that he'll help see these hopes and dreams come true for our family.Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com1tag:blogger.com,1999:blog-7621474699072573520.post-46453323712959165542012-11-10T18:54:00.000-08:002012-11-10T18:54:09.048-08:00Keep On Truckin'I haven't been posting much-and yes I'm going to use the "too busy" excuse again! October was a whirlwind for our family. <br />
Of course we started the month out with the cochlear implant surgery which went well. Then we had a week of "normal" which school and outpatient therapy at Sanford and of course sticking ABR in any time we can. <br />
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The weekend of October 19-21 is one of my favorite weekends every year! My mom, her sisters and their daughters all go scrapbooking for an entire weekend. Not only do I get to scrapbook for a weekend and get a day or two off of kid duty, but I get to spend the weekend with some awesome women who inspire me to be better in so many ways from raising my kids, being good to myself and deepening my faith in God. I have to say that my mom and her 5 sisters have an awesome relationship and I admire them all so much. They are all strong women who've raised kids (or are still raising kids), worked hard for their families (whether at home or out of the home) and have such deep faith in God. I can only hope to be like them all one day. It's always fun to chat with women who are like-minded-and bonus-we get some scrapbooking done!<br />
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Immediately following scrapbooking we headed to Rochester for James' cochlear implant launch (turn on) which I posted on last time. I still haven't gotten the video up-sorry! For those of you who are my friend on Facebook it is there!<br />
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Just a few days later we headed to Devils Lake to celebrate my Mom's 50th birthday! It was supposed to be a surprise party for her-my Dad did most of the arranging but she came home early and caught us! Of course she said she was suspicious when my Dad got up early on a Saturday morning and started cleaning and then when she got home and Alex was outside cleaning the yard she knew something was up! Nevertheless we had a good time and a great turnout of family and friends! My mom is an amazing women who has an endless supply of energy (at least it appears that way). In her 50 years she graduated from college, raised 7 children, has an awesome career that she loves, goes curling, has been on numerous boards for things like United Way and Parish Council, always been active in the church community, and so many more things! She's just an awesome woman and role model who I aspire to be like.<br />
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Then it was back to Fargo for more working, school, ABR, and therapy.<br />
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<tr><td class="tr-caption" style="text-align: center;">Watching Netflix in the hotel in Rochester</td></tr>
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OH! and HALLOWEEN! James still seems indifferent about Halloween. I'm not sure he really understands, but he does like to see all the kids and their costumes! Elliot on the other hand was super excited about Halloween this year. We did a little explaning about it and of course he had all the TV shows to help. We had picked out 2 costumes and let Elliot pick which costume he wanted. Wouldn't you know he wanted Ironman. For about a week before Halloween he was constantly taking us to his closet and showing us his costume (and James' costume too). Halloween morning when I told Elliot he could put on his costume, he popped out of bed so fast! Of course that was a Wednesday morning, which also meant that we had outpatient therapy at Sanford and like every other Wednesday morning I woke up late and we were RUSHING to be on time. Elliot was ecstatic about his costume and wore his costume and mask all day long. We didn't do much trick-or-treating but we did do the whole mall thing. Of course it was busy, but not too bad. James got really excited when I'd show him his bucket full of candy. He kept trying to get something out of there-darn spactisity and tightness. <br />
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<tr><td class="tr-caption" style="text-align: center;">Being Ironman is hard work</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Our Ironman and Spiderman</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdfFp2ptbKHm8nkPqno8Jqxp8NtATLCSWL3QGdpGCX6iEXMWrnVkaSPCdNLkITqx0QOSqoBiyxeFDGw7ZvA12MVH8weqEsNXHJbGWzclF0ZgT-Kmkae6wU3RNfRHmphLEVO0oM2jBAIYgo/s640/blogger-image-1056002273.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdfFp2ptbKHm8nkPqno8Jqxp8NtATLCSWL3QGdpGCX6iEXMWrnVkaSPCdNLkITqx0QOSqoBiyxeFDGw7ZvA12MVH8weqEsNXHJbGWzclF0ZgT-Kmkae6wU3RNfRHmphLEVO0oM2jBAIYgo/s640/blogger-image-1056002273.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Watching his own Netflix at the hotel in Rochester</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf_Lja-uFjpokuMFyEHVIBXObh93HREXRm_7jVCw6VEKetvO26VNaILSvK6Vg7KJ_3rQuzykiFgCBH777rS8b2RL4UiW9s2pK9J0PRPn8q3nGl6KvB5RLMr0KlBoCln0XoDqB-XShsf4A1/s640/blogger-image--1897083113.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf_Lja-uFjpokuMFyEHVIBXObh93HREXRm_7jVCw6VEKetvO26VNaILSvK6Vg7KJ_3rQuzykiFgCBH777rS8b2RL4UiW9s2pK9J0PRPn8q3nGl6KvB5RLMr0KlBoCln0XoDqB-XShsf4A1/s640/blogger-image--1897083113.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm Ironman!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Edal3oMmS_EW_SznczXukPj4NRg6PCstlv4imqdyC58TTUU6cX3g6rMB2OHsTAcrFDqGsdnG9xh0kGThf-FwRAHQE-9nVtO_u35CxDAWy4cZyF6Z4t38UoIPGYMTQphbuqOHFaOIUzEc/s640/blogger-image-177378166.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Edal3oMmS_EW_SznczXukPj4NRg6PCstlv4imqdyC58TTUU6cX3g6rMB2OHsTAcrFDqGsdnG9xh0kGThf-FwRAHQE-9nVtO_u35CxDAWy4cZyF6Z4t38UoIPGYMTQphbuqOHFaOIUzEc/s640/blogger-image-177378166.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleeping on the way home from Rochester</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">"Ironman has never looked so sexy as he does today"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF5vqRVvqxxSNZXpALLawdiCtWMbIErVxtFzpBEalyxrCLqqMwH5fXduJDtB3doo21GPyG74m6jJyQvSHGzBdDUZIcEY4H26rHN57m660Tc2v3AmL3t6La3fZrvHb2CH31iwGg80HW3rJF/s640/blogger-image-800605507.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF5vqRVvqxxSNZXpALLawdiCtWMbIErVxtFzpBEalyxrCLqqMwH5fXduJDtB3doo21GPyG74m6jJyQvSHGzBdDUZIcEY4H26rHN57m660Tc2v3AmL3t6La3fZrvHb2CH31iwGg80HW3rJF/s640/blogger-image-800605507.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">coloring in the waiting room at Mayo Clinic</td></tr>
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November started with a bang-Elliot and I got the stomach flu :( Thankfully we both recovered fast. November 7th we had another appointment with the cochlear implant team at Mayo. So November 6th Elliot, James, and I headed to Rochester. It went well overall and James is hearing well. The only problem is getting him to keep the implant on. If you didn't already know, it sticks to his head by a magnet and he easily knocks it off by turning his head and hitting the implant with his headrest. Sometimes it's accidental, but a lot of times it's on purpse either because he doesn't want it on or he feels like being funny. He definately knows what he's doing though. I tried a surgical tape and it works but James HATES it. I'm moving on to trying to find some liquid adhesives or even possibly the same things they use to keep wigs on. It will be interesting to see what we come up with. <br />
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As for our next endeavor, James and I are headed to Philadelphia, PA for some more ABR training next week. We'll fly out on Tuesday and back on Friday. I'm a little nervous for James to fly. I hope he does good. I'm sure security will take us awhile with James' wheelchair, cochlear implant (I do have a card for that) and the excess liquids I need for his medication and Pediasure. Wish us luck!<br />
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These are just pictures I could get off my phone-maybe I'll get the good ones off my camera sometime...don't hold your breath though. I'd hate to be responsible for people passing out.Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-91207308089829899632012-10-25T21:16:00.001-07:002012-10-25T21:17:56.302-07:00SUCCESS!Monday October 22 was the day of truth for James. We turned on his cochlear implant. The first thing they did was run some impedence runs to make sure the implant and electrodes were working. Those all went really well. They explained that the turn the implant on in levels called "units". Units of what I have no idea...but units they are. The impedence runs they did were at a level of 30 units and we saw no reaction (not uncommon at all) so we knew at 30 units he wasn't hearing anything. Most people when they are done with fine-tuning the programming are between 150-350 units. So they slowly increased it from 30 units to 35 and so on until we saw some response. He let us go up to 100 units and he wasn't too fond of that so we backed off to 90 units and left it there for the first day. <br />
To say it was exciting would be and understatement. Watching that amazing little react to sound for the first time was incredible. You could see the look on his face-a little bit of confusion and him looking around. We even got a little bit of a smile after a bit. We're so excited for the world that this opens up for James. Even if he won't be able to talk to us, he'll now be able to hear us and the world around him. I can't even imagine not hearing my mother's voice or the sound of rain. How exciting for him!<br />
The first day we left it at 90 units and kept the implant on as much as we could. He did really well with and didn't seem bothered by the sound. At one point he was taking it off constantly-but he thought it was funny and a fun game to play with mom. <br />
The second day we put it back on again and headed to the doctor's office. While in the waiting room Elliot was playing and there was a little girl there too. She wanted to know his name and her dad told him to go ask him. She asked him and he proceeded to ignore her. A few minutes later she tried again and this time he actually answered. "My name's Tony" Now, if you know Elliot you'll know that he loves Ironman (about as much as Spiderman) and of course Ironman's name is Tony Stark-so that's where he got it from.<br />
Back to James-once in the office we slowly increased the units. We watched him for negative reactions to see if we'd gone too far. They were hoping to get up to 120-130 units-he blew them away and allowed them to go up to 150 units! He got up to 170 units before he got really mad. So they left it at 150 and slowly each day we increase the volume in the morning and see if he's ok with it. If he is we leave it there and if not we go back to where we were before. We'll be back to Mayo the 7th of November and hopefully we'll be increasing some more. We're hopin to be up to 170 units by then. <br />
Everyone is so excited for James to hear! His teachers, therapists, friends at school...we're so excited for him! I'm attaching a couple of pictures. one of them picture that shows the "microphone" piece that goes on his head (it attaches by a magnet-the piece inside his head has a magnet) and the cable connects it to his processor (which contains the programming, the volume and sensitivity). His pieces are pretty cool. Right now we're using green, but we can also switch it out to blue, white or beige. The great thing about it too is that it's waterproof! We have to use certain pieces, but that'll be fun for bathtime and swimming!<br />
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I'll try to get video up-there's one on Facebook right now.<br />
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I'm also putting up his school picture-super cute!<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFzlNykZGfEpaC_vjY876BjFZrqzJ4-VdWHCxAx7kfU02wD7aMwnwNTG2h70_eOQpu0Rtli97yZofwDKFRtMwSMzkofS0Ed0q4YrtRWLJKiiN2S2H4RN_hVYs4PI_bGNwLMkxXZ0FTdRT6/s640/blogger-image-1353781869.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFzlNykZGfEpaC_vjY876BjFZrqzJ4-VdWHCxAx7kfU02wD7aMwnwNTG2h70_eOQpu0Rtli97yZofwDKFRtMwSMzkofS0Ed0q4YrtRWLJKiiN2S2H4RN_hVYs4PI_bGNwLMkxXZ0FTdRT6/s640/blogger-image-1353781869.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFtfHB6nN_5p0lQVLFBNESt7FU-P2UgUmCAyP5-HOCSslRW8ze5W2ckgopCC3MX_IGmRHNra1gbhLLtBy_RpMPzU8229Rx-NoifRToTg1hpDiRq66_VBp4ORNCvv2-nXdhZ9dSseq1K7WV/s640/blogger-image--2004666624.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFtfHB6nN_5p0lQVLFBNESt7FU-P2UgUmCAyP5-HOCSslRW8ze5W2ckgopCC3MX_IGmRHNra1gbhLLtBy_RpMPzU8229Rx-NoifRToTg1hpDiRq66_VBp4ORNCvv2-nXdhZ9dSseq1K7WV/s640/blogger-image--2004666624.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv1VMqHcj0rIfTWlb_haPna1HPvFhTOF8EaT9kjlULgO4a-Y7aA6OKVUgtrI5w4WMxyMe3YvEcq-1lN26rsreK-mIiZGR3yye7yANIt6YuVJD-gXeAA-wkOknvFsWBGykCybZmDMHzoznT/s640/blogger-image--457486529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv1VMqHcj0rIfTWlb_haPna1HPvFhTOF8EaT9kjlULgO4a-Y7aA6OKVUgtrI5w4WMxyMe3YvEcq-1lN26rsreK-mIiZGR3yye7yANIt6YuVJD-gXeAA-wkOknvFsWBGykCybZmDMHzoznT/s640/blogger-image--457486529.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzFeW6VjRlMkqgMjMqA9AKsRof53sYZfIuUx8EaONISKbGBDK3cJIL8cKj9gyLve7Pje6vOvOliYFiX2F4_Vn-davC1MbBt7pEvO3ULENq8MeS1ECYjxXpuTxXpLhK_3lfcO3uNfN5QfKr/s640/blogger-image--2066139797.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzFeW6VjRlMkqgMjMqA9AKsRof53sYZfIuUx8EaONISKbGBDK3cJIL8cKj9gyLve7Pje6vOvOliYFiX2F4_Vn-davC1MbBt7pEvO3ULENq8MeS1ECYjxXpuTxXpLhK_3lfcO3uNfN5QfKr/s640/blogger-image--2066139797.jpg" /></a></div>Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-33895942759745623082012-10-08T11:23:00.000-07:002012-10-08T11:23:06.656-07:00Back Home AgainJames and I have been home since last Thursday. His Cochlear Implant surgery went very well. He did very well with the anesthesia and it seemed that he had more concerns about heart rate levels instead of breathing. His heart rate was kinda high for awhile, but not out of control. It was mainly due to pain and anxiety. They tried to hold off on giving him any narcotics because that would depress his breathing. He did very well. They kept him overnight in the hospital at St. Mary's just to keep an eye on his breathing and such. He was a trooper and by Thursday morning at 9 am they said we could go home!<br />
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Coming home he had some drainage out of his ear for a couple days which is pretty normal and also tells us that the tubes in his ears are working. He's been in a good mood, eating well and happy. He went back to school today so hopefully that goes well (I'm sure it will).<br />
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Now we just wait until October 22 when we go back to Mayo to turn on the implant!Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com2tag:blogger.com,1999:blog-7621474699072573520.post-48193374468488727812012-10-03T06:33:00.002-07:002012-10-03T06:38:03.580-07:00It's Finally Here!Monday of this week James and I headed to Rochester, MN. That boy is getting really good at traveling! I get pretty worried when it's just the two of us because if he gets hungry or upset I have to stop somewhere. But, no worries. That boy loves his movies and if we stop once to eat he's usually pretty good. Tuesday we started the day with a Speech/Pathology consult. It wasn't really anything new. We talked about how James communicates right now, what he's working on in therapy at Sanford and at school and what steps we should take after implant. She definately thinks that Augmentative Communication is the route to go with James. That route definately scares me. There are so many options out there and it's so expensive. How do we know that what we choose will work? Because once we purchase one-we're stuck with it. <br />
The second appointment of the day was James' MRI to verify that he has an auditory nerve and to check the anatomy of his head. He went to sleep really well. It took about 2 hours. He didn't wake up as good as he usually does. He had some "laryngospasms" and it caused some mischief and they were pretty concerned about doing surgery on Wednesday considering the laryngospasms and his previous airway problems. Once I got back there he seemed to be doing well, we gave him a nebulizer and got packed up to head to the next appointment. The next appointment was kinda fun. We got to pick the colors and accessories for the implant! We chose lime green for one and blue for the other. We get a back up processor so that James is never without hearing. Then came the appointment with the surgeon. I wasn't sure what to expect. I expected the MRI to be normal but after speaking with the anesthesiologists that did the MRI I was worried they would cancel surgery. He was ok with proceeding :) We did decide to put the implant on the left side instead of the right like we originally planned, because the right side has some fluid in it right now. We would expect a better outcome with the left that has no fluid. In a few weeks we'll need to have his ears looked at to make sure his tubes are working in that right ear.<br />
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So, today I'm sitting in the waiting room. James went into the OR around 8:00 this morning and surgery should take about 2 hours. Anesthesia had a pretty clear plan about how they wanted to handle him so that makes me feel better after what happened yesterday. We aren't sure yet if he'll get discharged today or if he'll have to stay the night. Only time will tell. In the meantime, I'm praying to God for strength for James and his lungs and for all that are caring for him today.<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSFCziycKbymuSwtFA7TnR49cm9wsKFGckVNFBXYzZQEuNW3HWor15IkPbk6UfjvRb5wTPZzocyy6dPofiwXXn69Fg9kNZSWmEYCsuzK-SJlpImqhHORbz7tr0rbA8v-FCi5i2fUsdeVN7/s640/blogger-image-681115064.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSFCziycKbymuSwtFA7TnR49cm9wsKFGckVNFBXYzZQEuNW3HWor15IkPbk6UfjvRb5wTPZzocyy6dPofiwXXn69Fg9kNZSWmEYCsuzK-SJlpImqhHORbz7tr0rbA8v-FCi5i2fUsdeVN7/s640/blogger-image-681115064.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYB0P3u0NubcJim9kkX79JVCqvHm9Qylsz5R10WPXn8mCnmzheKmFqX77E0aXHhrFltrvcMKcZjcnV57Suv9FgWQLo50CC9qyMIGvlGxJ8hJz4TUEzRQz3Y07Mnzu7E-sgtP-BJLZG-nN9/s640/blogger-image--1897700461.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYB0P3u0NubcJim9kkX79JVCqvHm9Qylsz5R10WPXn8mCnmzheKmFqX77E0aXHhrFltrvcMKcZjcnV57Suv9FgWQLo50CC9qyMIGvlGxJ8hJz4TUEzRQz3Y07Mnzu7E-sgtP-BJLZG-nN9/s640/blogger-image--1897700461.jpg" /></a></div>Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-56562377857361848692012-10-03T06:19:00.000-07:002012-10-03T06:36:41.517-07:00ABR-Advanced Bio Mechanical RehabilitationI'm not sure what's taken me so long to write this post. I'm really excited about ABR (Advanced Bio Mechanical Rehabilitation) and I can't wait to see our hours of work on James and how it will improve his quality of life.<br />
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So, in August James, my parents, my little sister and brother and myself headed for Montreal. Long car ride! James did surprisingly well considering he hates long car rides. We watched a lot of movies (or just a few movies a lot of times) and even got a new one on the way. <br />
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We spent 3 days in Montreal. We arrived the Sunday evening before ABR training began. Monday morning my mom, Abbey, James and I headed to ABR. The morning session was more of an introduction. They spoke to us/taught us different things about Cerebral Palsy in general in addition to teaching us about the basic principles of ABR. My mom really learned a lot about Cerebral Palsy in general she said. One of the big things is that James doesn't bear weight. If you think about it, we can all just sit and be bearing weight and we don't have to consciously think about it-our body just does it. Even in a young baby-if you sit the baby on a table and give it support to keep it's head up and torso-it sits on it butt and bears weight. In kids with CP, like James that doesn't happen. If you try to sit James down-he doesn't sit on his butt and he doesn't bear weight. He falls over and leans this way and that. He almost kinda sits on his tailbone. Another concept is compressional strength and weakness. James obviously has weakness. The easiest way for us to see this was they took a picture of a healthy child-pretty young (a 2 or 3 month old maybe) and hold the child by the chest. The child keeps it's "figure" but if you do that to James his whole body collapses. His ribs collapse in and his head is bent over and his shoulders slump. Hopefully one day I'll have some pictures to show-that's easier to explain it.<br />
In the afternoon all we had was an assessment. It was pretty thorough and they took thousands of pictures. They'll use these pictures to help assign/prescribe exercises and also to gauge improvements.<br />
The next day, just James and I went back and we began our training. We learned 5 different exercises-1 for his chest, 1 for his upper back, 1 for his neck and 2 for his abdomen. The staff were amazing and I have such hope for this to improve James' quality of living.<br />
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On our way home we took a day to spend at Niagara Falls! How beautiful. James doesn't normally like sightseeing or hot weather but he did like Niagara Falls. I think it helped that the water/mist from the falls kept his cool. He didn't particulary like the boat ride because of the poncho's but he did pretty good the rest of the time.<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyo_Gn0aOoLmhF-iM6HeE0k36rkT-gAH3thXwLBxLklbeHSGUNRkGdeWdfl_JWaai8iLCfRy_TS1bE5HEY_CT9y82M1OM2S8BfgVeFLA82m-IU4djztUGud6JFaGPm3EKEJ8jdFhVVeZgS/s640/blogger-image--2139024417.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyo_Gn0aOoLmhF-iM6HeE0k36rkT-gAH3thXwLBxLklbeHSGUNRkGdeWdfl_JWaai8iLCfRy_TS1bE5HEY_CT9y82M1OM2S8BfgVeFLA82m-IU4djztUGud6JFaGPm3EKEJ8jdFhVVeZgS/s640/blogger-image--2139024417.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv3wX4-ftKMPFdWgy6Niy8EnGcSKSyVp8DhkYNKRkp17ATX6dCjpyDsj-Xf3Fl4uZcS7_PodiejuRBA-NZWBFnDOnmpYKSE_fWDCvDciE30z63QexMUP2pg42f9pYaH48DyBR-uqcEfFju/s640/blogger-image--2081115071.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv3wX4-ftKMPFdWgy6Niy8EnGcSKSyVp8DhkYNKRkp17ATX6dCjpyDsj-Xf3Fl4uZcS7_PodiejuRBA-NZWBFnDOnmpYKSE_fWDCvDciE30z63QexMUP2pg42f9pYaH48DyBR-uqcEfFju/s640/blogger-image--2081115071.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE1SwOHLUcoCLR19ikFuQlwiNi7zvDFdHJklMwZ2BmSKsRIe6DqL6Gty2Q5KOkafTys6iaW49dYEy7BaND_TXm1sxzdbh9jX41WSSKSK1QHwED9j30hx4ZOWvEHhXvxU4RsV6SHpNk-VC9/s640/blogger-image--205343159.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE1SwOHLUcoCLR19ikFuQlwiNi7zvDFdHJklMwZ2BmSKsRIe6DqL6Gty2Q5KOkafTys6iaW49dYEy7BaND_TXm1sxzdbh9jX41WSSKSK1QHwED9j30hx4ZOWvEHhXvxU4RsV6SHpNk-VC9/s640/blogger-image--205343159.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzVpuZ5fxweAsGLDeWuQixWy9xYlXClBSpilt1sEcQgEGWa7e31dmSHsSpoAPLtYGeKWyIEt82jaJ1P2KbCbfryn9jFkwvuv00Cq70P2h2_ZwI6Y7WdZMKU-kGZwoIycslvbI6xP350zXh/s640/blogger-image--1433281320.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzVpuZ5fxweAsGLDeWuQixWy9xYlXClBSpilt1sEcQgEGWa7e31dmSHsSpoAPLtYGeKWyIEt82jaJ1P2KbCbfryn9jFkwvuv00Cq70P2h2_ZwI6Y7WdZMKU-kGZwoIycslvbI6xP350zXh/s640/blogger-image--1433281320.jpg" /></a></div>Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-11024335194563300592012-08-28T20:32:00.001-07:002012-08-28T20:32:36.435-07:00Surgery is Set!A few weeks ago James and I went to Mayo Clinic in Rochester to have him evaluated for cochlear implants. The first day we met with 2 Audiologists from the cochlear implant team. We did a lot of talking and discussing. We talked about James medical and hearing history, how he does now with hearing, what cochlear implants do, what we could expect from a cochlear implant and on and on. They also did some testing with James. The testing was somewhat similar to what he's always had done but a little different. Instead of putting him in a soundbooth along and watching for his reaction they had one person in the control room and one person in the soundbooth with him. That way they could watch his eyes and movements more closely to get a more accurate read on what levels and frequencies he can hear. <br />
After doing the testing and reviewing the Auditory Brain Response testing we did in Fargo, they agree with the diagnosis of Auditory Neuropathy Spectrum Disorder. They took a look as his ABR that was done in Marshfield the first 2 times before he got hearing aides and it appears he's had Auditory Neuropathy all along. This upset me quite a bit. As they explained to me how to read and audiogram and ABR it was quite clear to me that he's always had Auditory Neuropathy. I felt like we've lost all these years doing something that hasn't helped him at all. I realize that had we known this years ago it doesn't mean James would be speaking, but I do think he'd have much better listening skills and his communication could be in a better place than it is right now. <br />
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But I can't dwell on that and I have to move on. And so we are. We had a second appointment with the cochlear implant team Audiologists and they gave us some insight into what we could realistically expect from James with a cochlear implant and what kind of follow-up and therapy he'll have to do. They also reviewed the different types of devices. There are 3 devices, all pretty similar. We chose one that can be worn off the ear and is also waterproof and can be worn swimming and in the bathtub. <br />
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Lastly we saw the surgeon. That was a pretty quick and painless visit. James will have an MRI the day before surgery and if he has an auditory nerve, the cochlear implant is a go the next day.<br />
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October 2nd at 11am will be the MRI and October 3rd will be surgery! We can't wait!Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0tag:blogger.com,1999:blog-7621474699072573520.post-50583922015301295652012-08-28T18:23:00.000-07:002012-08-28T18:24:52.154-07:00Family VacationFor Christmas 2012 my parents were generous enough to get us all Twins tickets! So off to Minneapolis we went. The first day we left Fargo midday and did a little shopping in Albertville with my family. While we were there I finally bought James some tennis shoes to fit over his new AFOs. James hasn't had shoes in a couple of years because his AFOs have had grippers on the bottom-he didn't really need shoes. As winter time came this past year I realized that we were outside more getting on and off the bus and the poor kid had just socks and AFOs on! For the winter we used a blanket to cover his little toes but this coming year he'll have shoes!! Shopping for shoes to fit over his AFOs was interesting. I found the easiest way to do it was to try shoes that tied instead of velcro-I just found it easier to make the shoe as wide as a could. We had the lady at the shoe store measure his AFO and then we tried Wide shoes with shoelaces. First I loosened the shoe up and fit the AFO in. Once I knew I could fit the AFO in I tried to the shoe on while James was wearing the AFO. Definately a learning experience. On the easier end of shoe shopping, Elliot got himself some Spiderman shoes. Man does that kid like Spiderman! He was pretty excited. <br />
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That night we just hung out by the pool and ate supper as one big family in our parent's hotel room. The pool was pretty awesome for kids. The kiddie pool was a walk in pool that was heated with a pretty neat slide. The kids all loved it! James and Elliot even went swimming in the big pool with mom and dad and had a blast. James loves swimming! I've been meaning to get him into lessons-we just haven't had much free time! Elliot thought swimming was great and kept saying "kick kick kick paddle paddle paddle" He even started repeating that as we watched swimming in the Olympics this past week!<br />
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The second day we headed to the Mall of America. We did a lot of walking and a little shopping. The kids' favorite part was the Disney store. Elliot is all about the Marvel comic guys right now and we couldn't get pas the first part of the store without stopping to look at Spiderman, Iron Man, Hulk and Captain America. Of course later in the store we got to see Mickey Mouse stuff which made James' day. The kids got so tired they took nap in their strollers.<br />
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After the Mall of America we headed to Target Field to see the Twins play. James loved it! Elliot liked it when he sat still long enough to watch. To no surprise the Twins lost, but it was a pretty good game. They tried to make a come back at the end, to no avail. </div>
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Wednesday we took the kids to the Como Zoo. It was pretty good and free! The kids love looking/seeing animals, Especially James. It's fun to watch Elliot see them all too since he's learning the names and sounds that go with each animal. </div>
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All in all it was a good trip. Short and not far from home, but still good.</div>
Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com1tag:blogger.com,1999:blog-7621474699072573520.post-54049527130146586152012-08-05T00:57:00.001-07:002012-08-05T00:57:21.218-07:00Short NoticeI got a bit of a short notice on some appointments. Mayo Clinic called Thursday afternoon to let us know they could get us appointments on Monday, Tuesday, and Wednesday. Wow....Of course I was so excited. I couldn't believe we finally had appointments but with only a couple days notice I wasn't sure it was really going to happen. First order of business was to get off of work....Sue and Marie at work performed a miracle for me and I got off work! Thanks a million to the people who are working night shifts for me! After getting off work I figured it would all be easy from there. We got a hotel room booked, we got the appointments confirmed, I made phone calls to our insurance to inform them of appointment dates. Lastly I arranged for Elliot to go visit Grandma and Grandpa Kitchens for the week. Auntie Abbey will watch him during the day. This was a huge load off my shoulders. It can be pretty hard to focus on James and the doctors when I have Elliot at appointments. He's not usually a bad kid, he's just busy and explores everything he can in the doctor's office. It can be a bit distracting. I'm a little sad that I won't see him for so long. He's never been away from us more than a couple of days (and that was pretty recent). He'll head to Grandma's tomorrow and we'll get him back on Saturday when we all head to Minot to my cousin's wedding.<br />
So I guess James and I are heading to Rochester, MN to the Mayo Clinic on Monday. We'll have only one appointment each day but I think they'll each last a couple of hours. I'm not exactly sure what each of the appointments really are or what we're doing. I'm not sure if it's just talking about James or if it's testing of some sort that we haven't done here in Fargo. Wednesday we'll head back home so I can get back to work. <br />
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We recently took a trip to Minneapolis to see the Twins play. James loved the game! I'll post more details and pictures soon (hopefully while we are in Rochester since I may actually have some free time!). I'll also give everyone an update on our fundraising!Amanda Johttp://www.blogger.com/profile/15445271754259772520noreply@blogger.com0