tag:blogger.com,1999:blog-39876309218291018892024-03-13T11:00:32.092-07:00Dylann's JourneyDylanns Journey with arthrogryposis.Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.comBlogger86125tag:blogger.com,1999:blog-3987630921829101889.post-58394981979216024312023-01-09T21:28:00.001-08:002023-01-09T21:28:08.026-08:00Final stretch <p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"> </span></div><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2glw9q2OspgX2tiRusekHI3vdUY0fpmFccCOB094SDJCE9N1Uc9d7_oER_EMOx-tsZHFsBdhN8qVdCpts2i1JpLWVvwKwfX18rvR858uL8Ic0_KQHI4c-LzhW6qGu6ESiW6LVHDZ7Rdxp5PcvEq7licuFmVjxydIMcEUZWXw2zFETikxTG_IiaIYsug/s3072/E2066C9F-796C-4973-9082-F391328F3C44.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3072" data-original-width="2796" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2glw9q2OspgX2tiRusekHI3vdUY0fpmFccCOB094SDJCE9N1Uc9d7_oER_EMOx-tsZHFsBdhN8qVdCpts2i1JpLWVvwKwfX18rvR858uL8Ic0_KQHI4c-LzhW6qGu6ESiW6LVHDZ7Rdxp5PcvEq7licuFmVjxydIMcEUZWXw2zFETikxTG_IiaIYsug/s320/E2066C9F-796C-4973-9082-F391328F3C44.jpeg" width="291" /></a></div><br /><p></p><div>Today marks two weeks since returning to Florida after Christmas. Micah came back with us for the first week. It was so nice to have him with us - we’ve been really missing him. He helped entertain Dylann for a few days so I could get some work in. They got to swim in the pool and we have the best shops and activities to walk to!</div><div><br /></div><div>Therapy went pretty well that first week. She had 4 days of active sessions really focusing on strengthening her quad muscle in her right leg. By end of the week she started getting frustrated. She’s trying so hard to move her knee and do things she’s just not able to at this point. We see a few different therapists and one of them started questioning if she has enough quad muscle to progress. There was some confusing notes in her discharge summary that says she has no distal quad (above the knee) so they were questioning if she’s going to be able to gain enough to walk without braces. So we ended that week pretty sad and discouraged. I was wondering if any of this was even worth it. </div><div><br /></div><div>Jeremy came Thursday night before New Years so we were able to have a little fun that weekend. We went to the beach and hung in the pool, shopped, and saw some New Years fireworks.</div><div><br /></div><div>New Years Day Jeremy and Micah went home but grandma came the night before for two weeks! She’s been so helpful to keep me sane :). Monday we had no work and therapy so we relaxed. Dylann started complaining of “heart burn” that day on and off a handful of times. By Tuesday she kept saying it and as we talked more about what heart burn felt like for her, she was having some sharp pains near her heart and lower ribs. She’s been having some GI/constipation stuff for the last year so my initial gut was it’s that and started her on a “clean out” Monday afternoon. That evening she was getting pretty worked up and scared thinking something was happening to her heart. Dylann is a very reliable person surrounding her medical needs so when she asked to go to the doctor at 9pm that night, we did. Not a fun situation when you’re far from all your doctors.</div><div><br /></div><div>Luckily urgent care was quiet and they were so great. They did an exam and watched her vitals for a bit as well as took an X-ray of her lungs and stomach. Overall she looked great other then her tummy getting backed up again (as I suspected :) ). She calmed a little after the MD told her that her heart and lungs looked and sounded great - but the pain continued Wed and Thursday so she didn’t want to do much. It seemed to worsen with activity.</div><div><br /></div><div>Last Thursday we saw her orthopedist again- some good and bad news :/. I asked about her quad and what’s realistic especially since she’s not ever used it being in KAFOs her whole life. He looked at her muscle function and told me that he feels confident she can gain strength there! He confirmed it’s going to take months of hard work beyond what is done while in Florida, which we will do and wasn’t an issue- just wanted to confirm we have realistic goals. He seemed very happy with her leg progress.</div><div><br /></div><div>When he heard the update on her chest/rib pain, things took a left. He said he wanted to check her spinal cord. He had asked me to send her MRI disc she had done when she was 1 so he could make sure there is no tethering or other nerve etc issues. I tried for weeks and they still hadn’t received it. So after he heard about the new pain he says he wanted an updated MRI of her spine asap. This also didn’t move us to discussing when we can leave which I was hoping to make a plan for in next week or two. :(</div><div><br /></div><div>So Friday our plans shifted to getting her a MRI. We had to cancel therapy to get there and then sat and waited two hours. We did it unsedated so wasn’t Dylanns favorite hour. They let me stay in there but she was pretty nervous and scared. She was able to stay calm enough to lay there perfectly still for 70 minutes. She said she kept thinking of shopping, the beach, and ice cream :). So….. we did all three of those over this last weekend. I’m amazed every day at home amazingly strong she is.</div><div><br /></div><div>Friday she didn’t have any more pain. Saturday she did for a bit in the evening but it was lower in her belly. She didn’t have it yesterday or today. Yeah!!! She finished her “clean out” so I’m still feeling pretty confident that was the issue but sure resulted in a ton of extra medical visits, time, and costs. Thank goodness Grandma was here to help with the crazy last week. Hopefully she isn’t too traumatized by our crazy life.</div><div><br /></div><div>We haven’t heard the outcome of the MRI as of yet from the doctor but I read the report in her online chart and it reads all normal. Hoping he feels the same. PT went well today - they spent a lot of time walking and stepping with her KAFO on (and sometimes unlocked). We see the MD on Thursday again and we’re really hoping we can leave on Friday. Dylann and I are both over it and not functioning at our best. Since the PT/rehab is going to need to continue for significant time we’d rather do at home if an extra week or two here isn’t going to move her significantly farther. Send warm thoughts that we get to start the drive home on Friday! We’re ready.</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-15628944081208683632022-12-30T14:26:00.003-08:002022-12-30T14:27:37.100-08:00First few weeks and Christmas <p>We just hit our halfway mark of being down here in Florida!</p><p>For the week and a half after discharge we did daily PT. The main goal is to keep her knee moving from full extension to at least 90 degrees flexion/bent. She was able to bend farther then that pre surgery which she should gain all back over time. She has pretty much met this since her third session! Her knee does tighten up through the day and her quads are not yet strong enough to keep the knee straight on her own. So we’ve been doing our own home pT for another 1-2 times a day on top of clinic.</p><p>The house where we were staying until Christmas had so many fun activities! She saw Santa 4 times, held baby Kangaroos, made 10 bags of slime, made cookies and gingerbread houses, and lots of art projects. She also met some new friends from Ohio and South Carolina who we did some fun things with as well like go to turtle sanctuary and dress up like a Rainbow High doll. Grandma was here for 5 days and we went and saw the Sandi Christmas tree and hung out down town. </p><p>She managed to keep up on her school work! Mom, on the other hand, is a bit behind. She also LOVED to check the mail and email each day. She got so many lovely cards notes and packages. Thank you to all of you who took the time to send things! It made her day.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7gXDznh3rp8aoVf0OsjehetRfhE-EgR-NJbcnbmKsFFM2DO-vQtmZ5uvDOSo1Ug9yMEs2ym1sSovqGiqN4FcdJ8WdI9SjQTSWDr6EpUVbzFPX4hzqwEoBePDyx8VNCTaG9afjOdhW2hygE3PhZBMhH1ahkG7N_4RWuTkA_4LGuyXmq7Nfi8rOu9tOEg/s4032/E3135027-41CA-428A-92ED-49B84D875917.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7gXDznh3rp8aoVf0OsjehetRfhE-EgR-NJbcnbmKsFFM2DO-vQtmZ5uvDOSo1Ug9yMEs2ym1sSovqGiqN4FcdJ8WdI9SjQTSWDr6EpUVbzFPX4hzqwEoBePDyx8VNCTaG9afjOdhW2hygE3PhZBMhH1ahkG7N_4RWuTkA_4LGuyXmq7Nfi8rOu9tOEg/s320/E3135027-41CA-428A-92ED-49B84D875917.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg83DADh8hqD1XNxS3Y2IgSOuB8MtwzQcIzn5DNlgwyjkA5SHUjoIoRu3thHmA_UXg8Gq9Se_FpO4hKt_FFdg_aSVnGFedwtYXKM-dbr9iLYtssK0YH7OPzf82IubGhJ6qapEDwAvJDeHkGSIk8wVQIwSvifE5m2X-pY5XF36cdqM5z0-AXxHEcYUG_Lw/s4032/D1356448-EF28-4F54-B8A9-2D2F8CBF7EA9.jpeg" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN5zlmb3Lu7-lZ9UZmNsj7JfOJYiJB0Mr44vntSrvhQKq8OGfo6rK_ra1-0B0X-6HvlDvLYiBUxdN9rNlftzkslz0UgXBxlNleXwdwriqLepofezyBukHO3V_n1YQqSg-xY7Xps8vjdbqxb3yFA5-IaVd132yBH1y3Wsgcv8ycVCYjn6Utq43eqlM9Zg/s320/55DA581A-B225-49F7-B8C5-555140B277C9.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixqpPGoPHkuJH7Zd4wOxFFsOGENUsG0pY85V2HHi_GEtXlMucdMwXmoXNeI6qL_LjKR_Tu_u7rcbxGC7K7RmRJ60Fs7LKtYOEbO8xJ73bjYTvYWUSRPg6owLlxNw5M1FrFlfFsAAr2va1hAkWeyjhrKz8wzzrijpvOtIeIUCyQclmAjebj9cdRGvbisA/s4032/9DB3424C-6EB5-425A-B112-BB15BD292913.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixqpPGoPHkuJH7Zd4wOxFFsOGENUsG0pY85V2HHi_GEtXlMucdMwXmoXNeI6qL_LjKR_Tu_u7rcbxGC7K7RmRJ60Fs7LKtYOEbO8xJ73bjYTvYWUSRPg6owLlxNw5M1FrFlfFsAAr2va1hAkWeyjhrKz8wzzrijpvOtIeIUCyQclmAjebj9cdRGvbisA/s320/9DB3424C-6EB5-425A-B112-BB15BD292913.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; 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margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxb5dYf2eoO5kiq50Eqm8SF_Q8T-byUXwg8s2b_C2kIYmPN5zW3g2kvCZTFefDOS35oraz_PsmXqd0-sMQmGuCSZujM8McZMhLSMfRwyUU7KSLsxLMkrYCmcy4M8iONywzo6lk4byCBUFYvAd6toTofFWpCgyE4bozh_V0IK-8sqRIWAmLaUmCfwfliw/s320/2C648D1F-C169-4A13-B02E-771BEAA45200.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3DKwaLzzBlWsDn1y_JSx8z17oDCfUvRqG0rA39XQyT-pei3jbqr-CckOBR37ZyE-YQ5245Gq0MirU6zt0O5fML1W2uZw3WZeDG3EheOJSfLoXFmQkXNegzCMG7uTy0aa1ds1iavaos2HpGn-AbdcloKSWJpnkyYAwMqRyN82l-ZwNgk54a58KiUm5IQ/s4032/2A529BF1-EF7B-4E74-A69A-98C47AC7397B.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3DKwaLzzBlWsDn1y_JSx8z17oDCfUvRqG0rA39XQyT-pei3jbqr-CckOBR37ZyE-YQ5245Gq0MirU6zt0O5fML1W2uZw3WZeDG3EheOJSfLoXFmQkXNegzCMG7uTy0aa1ds1iavaos2HpGn-AbdcloKSWJpnkyYAwMqRyN82l-ZwNgk54a58KiUm5IQ/s320/2A529BF1-EF7B-4E74-A69A-98C47AC7397B.jpeg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Thursday 12/22 we saw the doctor for her post op appointment. He said that her leg looked straight, was healing good, and she could move to active PT! She needs to spend a lot of time strengthening her quad muscles so that’ll be our focus of last 4 weeks. </div><p><br /></p><p>We then luckily caught a flight to Minnesota Thursday night to home in time for Christmas. We were not sure that was going to happen with the weather so Dylann was pretty happy to get home for 4 days!</p><p>We had a great Christmas then headed back to Florida Monday 12/26 evening. We moved into an apartment since returning so no longer have the same mailing address. Trying to see if we have options as I know some of you have asked for it. We do have access to a pool so Dylanns pretty happy! ❤️ </p><br /><p></p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com1tag:blogger.com,1999:blog-3987630921829101889.post-11656756618187634682022-12-09T05:38:00.000-08:002022-12-09T05:38:02.915-08:00Post surgery updates <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuCrmZdKNadF7M-qvEnjgyLJTX7wQD2A9iJFCSd-SbV81-SxLRPaaCsJJFBCvNvnBcBBOBeh-LnGMJt7riSR5OuzKP8uUoxC9igfmIO-X660xGR6eo5roPS6IxwxWa7wo2oRIY3YlFERMKEzLx9R-f-f9zFfufJjweNSKesCERRNAi6TBb_xzvsGAz0g/s4032/E2FBF7F9-F991-4374-A7CC-AF4A73A7379D.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuCrmZdKNadF7M-qvEnjgyLJTX7wQD2A9iJFCSd-SbV81-SxLRPaaCsJJFBCvNvnBcBBOBeh-LnGMJt7riSR5OuzKP8uUoxC9igfmIO-X660xGR6eo5roPS6IxwxWa7wo2oRIY3YlFERMKEzLx9R-f-f9zFfufJjweNSKesCERRNAi6TBb_xzvsGAz0g/s320/E2FBF7F9-F991-4374-A7CC-AF4A73A7379D.jpeg" width="240" /></a></div><br /><p></p><p>It’s been a busy few days. Dylanns first 6 hours after surgery was quiet. She was very sleepy and it took all her energy to even speak. Mid afternoon she started to perk up a little and ate some lunch. She had some more moderate pain before bed (outside of that was pretty controlled) so she took some stronger meds and was pain free for rest of the night. We shared her bed and got a little sleep.</p><p>Wednesday she was back to herself. PT came and helped us get her up in a walker which she was able to do independently. Her leg is in a long immobilizer brace and she should be cleared to stand/walk on it in a few days, although she’s not excited about that :).</p><p>We were cleared for discharge around lunch and left a few hours after. This was the quickest she’s recovered post surgery! Her other major surgeries she was inpatient 3-5 nights with different issues like fevers or oxygen support needed. So we weren’t expecting to get out so soon.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6VLebPVdYYpilPj3UWqjjmSJ8pWFxpVARh6fksvhRv3-Rd4ShkpOuSBAAqYk-G7BB4WsfX0ovD9DuosSms_ZfeXKPqQ2HQte4IbdVRCbR4jU8fF5KQmJ14mIdoZzTuVoSdPhaDhlrxYV0toD_1AA5Hn2VHTWveFrbanOQrNCoE3Nfp3f98nIbH5eOng/s4032/1A777DED-E68E-4207-A4C3-2ED3BE35FE91.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6VLebPVdYYpilPj3UWqjjmSJ8pWFxpVARh6fksvhRv3-Rd4ShkpOuSBAAqYk-G7BB4WsfX0ovD9DuosSms_ZfeXKPqQ2HQte4IbdVRCbR4jU8fF5KQmJ14mIdoZzTuVoSdPhaDhlrxYV0toD_1AA5Hn2VHTWveFrbanOQrNCoE3Nfp3f98nIbH5eOng/s320/1A777DED-E68E-4207-A4C3-2ED3BE35FE91.jpeg" width="240" /></a></div><br /><p><br /></p><p>She rested the rest of the day in bed and was finally able to have her ice cream! Got her favorite at Culver’s. She had a spike in pain before bed but after some medicine she hasn’t taken any more in over 24 hours now.</p><p>Yesterday was pretty good. She had some nausea in the morning and was sick a few times. Dad left to go home so I think some it was her nerves. Grandma gets here Saturday. She got some mail at the house which made her very excited and happy. Now we’re on an hourly mail check schedule LOL!</p><p>After dinner my full Dylann was back. She was getting around in her walker. She was making jokes and happy. She drew me this sweet picture ⬇️</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYdlt0lkKYB22-gRL3glwdSyY-xLuPz5YfkpKY1hEGRQex0jXIR4_Jn-cIW2SzfGf3d4jhkooeqan106pmtr7wqj2avpGvMib-qsDMBlxCdUPKfEr0SrfuNctCE0s6PuckD4dr_JN0b3Kj4coDpi13t7EuUn5xxFZ61UBG1KkhX7sl3WtjhGtoWdCXYw/s4032/5F2B84B1-5C46-4051-931C-515E020BBCDA.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYdlt0lkKYB22-gRL3glwdSyY-xLuPz5YfkpKY1hEGRQex0jXIR4_Jn-cIW2SzfGf3d4jhkooeqan106pmtr7wqj2avpGvMib-qsDMBlxCdUPKfEr0SrfuNctCE0s6PuckD4dr_JN0b3Kj4coDpi13t7EuUn5xxFZ61UBG1KkhX7sl3WtjhGtoWdCXYw/s320/5F2B84B1-5C46-4051-931C-515E020BBCDA.jpeg" width="240" /></a></div><br /><p><br /></p><p>She had a virtual piano lesson with her music teacher and wrote a song.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYADNA-V4jQpC1XqbFVc_YFoMDvBat-GWzsXOmH3wocU3r7svDYP54M4ygkSw9Tik5fULq9XeDiBtckPcOac-6YLXvcZRVPi4HLwTOrnk8gnW6FryH_QD3WUh9idY46f0Lw2rBn4IUewOPbFSqs0o2hAwoSbe_LOcshF4Y6e_kl0nn8aiS_Oa9fCirFA/s4032/4E2D7A3D-B67A-4285-B824-5EE45EB595B8.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYADNA-V4jQpC1XqbFVc_YFoMDvBat-GWzsXOmH3wocU3r7svDYP54M4ygkSw9Tik5fULq9XeDiBtckPcOac-6YLXvcZRVPi4HLwTOrnk8gnW6FryH_QD3WUh9idY46f0Lw2rBn4IUewOPbFSqs0o2hAwoSbe_LOcshF4Y6e_kl0nn8aiS_Oa9fCirFA/s320/4E2D7A3D-B67A-4285-B824-5EE45EB595B8.jpeg" width="320" /></a></div><br /><p><br /></p><p>Before bed we removed her dressing over her knee as instructed. She was very nervous about this in case her knee moved anticipating the pain. There’s minimal swelling and all the coverings looked great. She decided on her own to try to move it and was able to straighten and bend it just a little on her own! She said it felt tight but didn’t hurt so is a little less scared for Saturdays first PT session.</p><p>I continue to be amazed at how strong and resilient Miss Dylann is. ♥️♥️♥️ Today/Friday we hope to get outside and enjoy the 80 degree weather for a bit between activities. </p><p><br /></p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com6tag:blogger.com,1999:blog-3987630921829101889.post-48041500935207154782022-12-06T19:11:00.011-08:002022-12-06T19:14:30.395-08:00First few days of FL update <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiREq5cyMmrRtYTTT9FWGulYbNd_p5yheTMVEEyHtqHsryj8zYRIJt0cXnUsVr38BsS9X6KIQIMSog9OFpq6oKhad325owysOlGPEdDYO-Kp44cskwrTYvyz-bAp4bTwMnJ6dAWNejzdTt4kfbQWi0p69GFuFTGTt-KcB76a8NGvax--ks8gI6866g1kw/s4032/8A73CFB8-BD05-44BA-AB16-13F255358544.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiREq5cyMmrRtYTTT9FWGulYbNd_p5yheTMVEEyHtqHsryj8zYRIJt0cXnUsVr38BsS9X6KIQIMSog9OFpq6oKhad325owysOlGPEdDYO-Kp44cskwrTYvyz-bAp4bTwMnJ6dAWNejzdTt4kfbQWi0p69GFuFTGTt-KcB76a8NGvax--ks8gI6866g1kw/s320/8A73CFB8-BD05-44BA-AB16-13F255358544.jpeg" width="240" /></a></div><p><br /></p>Florida update!<p></p><p>We left Friday and it took two days to get here. We made it to Illinois the first night and had a nice comfy hotel. Second night we got to just past Chattanooga TN and didn’t quite have the same experience of hotel. Lots of reasons but Dylanns only request was to swim in a pool before surgery so we made sure it had a good one. We stopped early, checked in, ordered dinner, got changed and headed to the pool just to learn it was closed. 😢. She was so sad. We told her we’d make it up to her on Monday after her appointments and go to an outdoor public pool in west palm beach!</p><p>Sunday we arrived about 630 and got all unpacked and settled. Monday she had her pre op which went well. We then tried to find our pool for pool day. Tried 5 pools and apparently Mondays are not the day to find a pool as they’re closed out here. Fail #2. We did go spend a few hours at the ocean instead ♥️.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtQjtq-vd_KIvVZeDRb6MEDRaa1bja59ob-A2UaWPSiNvK-gpUrim-F8NOopYsv2_cl7D9JnrbbnKE5JAYfbw9cRSSXSb4VlsMo7Zb1hFv6IHz4hjUOdOekLlBSC64czpveI2ZsmBoDk8L-_VRi7k0-hs2l0zQ-T-SrBygocDHew6iRmqzjcm8AiFEug/s4032/2030C297-4BE1-42D1-8894-7C44BC4BE164.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtQjtq-vd_KIvVZeDRb6MEDRaa1bja59ob-A2UaWPSiNvK-gpUrim-F8NOopYsv2_cl7D9JnrbbnKE5JAYfbw9cRSSXSb4VlsMo7Zb1hFv6IHz4hjUOdOekLlBSC64czpveI2ZsmBoDk8L-_VRi7k0-hs2l0zQ-T-SrBygocDHew6iRmqzjcm8AiFEug/s320/2030C297-4BE1-42D1-8894-7C44BC4BE164.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUuyJm73mJR3EA-NI7RVIHp3J-JoONoSR6pMB4dGyW0wW0nrYIsVmRh_HDEGkTea4fJrgW6ofoFMREOwfZlgIc3ZSfGtfJQs1Q2bPugkMEYNhiWGMXJNiD5CTKW3xNvb5a5gK64STV1xdjp4HDuuyC6psafx_wDbI6Nq5y-HM_0u8fjjgt1eqvJpl7Zg/s4032/24019F88-B738-4BAF-A896-E970A8CF61C0.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUuyJm73mJR3EA-NI7RVIHp3J-JoONoSR6pMB4dGyW0wW0nrYIsVmRh_HDEGkTea4fJrgW6ofoFMREOwfZlgIc3ZSfGtfJQs1Q2bPugkMEYNhiWGMXJNiD5CTKW3xNvb5a5gK64STV1xdjp4HDuuyC6psafx_wDbI6Nq5y-HM_0u8fjjgt1eqvJpl7Zg/s320/24019F88-B738-4BAF-A896-E970A8CF61C0.jpeg" width="240" /></a></div><div><br /></div><div><br /></div>Today was surgery day. We got there early - 6 am - for 8 am surgery. Things went well. Her surgeon said her knee is straight (was the goal) and he didn’t have to shorten the bone like he thought he might. This is good news from a recovery standpoint - less pain and recovery but also means she can start standing on it much sooner. That was a win! She was pretty tired for awhile after she woke up but has perked up tonight. She’s almost back to herself. It’s going to be a long 6 weeks of rehab to keep her knee moving as much as possible. <div><br /></div><div>Today her only request was a M and M mixer from McDonald’s. I went to two and apparently west palm beach McDonald’s ice cream machines are down. 0 for 3 this week on Dylanns wish list 😢.</div><div><div><br /></div><div>If you want to reach her between now and 12/22:</div><div>Email - dylannsdash@yahoo.com</div><div><br /></div><div>Mail </div><div>Dylann Paradeis </div><div>Quantum House </div><div><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: 100%; background-color: white; caret-color: rgb(15, 49, 96); color: #0f3160; font-family: Inter; font-size: 17px;">987 45th Street, West Palm Beach, FL 33407</span></div><div><p><br /></p></div></div>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-82797565321925792592022-11-25T10:27:00.001-08:002022-11-25T10:35:24.566-08:00Our next step in Miss Dylann's AMC journey <p></p><p><span style="color: black; font-size: 13.5pt;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="color: black; font-size: 13.5pt;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoSvHn0bBBVl-WUl_p3LjCCWMElVXRhaLGuAgv1SJonxPoOnVibAlRhh84x-8sxX21o6raHK0IwQ3UBETamM-LdqwHfVT6jgB3jwVgh6Dij-PVobLBr7N-GyijNEgAevWFC3UCnFpJ2AsUwQIqRiIYhZRCL2vqk9fJgUgh9uDGlja-gkzA8ojrLm6F8Q/s2048/dylann.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoSvHn0bBBVl-WUl_p3LjCCWMElVXRhaLGuAgv1SJonxPoOnVibAlRhh84x-8sxX21o6raHK0IwQ3UBETamM-LdqwHfVT6jgB3jwVgh6Dij-PVobLBr7N-GyijNEgAevWFC3UCnFpJ2AsUwQIqRiIYhZRCL2vqk9fJgUgh9uDGlja-gkzA8ojrLm6F8Q/s320/dylann.jpg" width="320" /></a></span></div><span style="color: black; font-size: 13.5pt;"><br /><span style="font-family: georgia;"><br /></span></span><p></p><p><span style="font-family: georgia; font-size: 13.5pt;">It's been a long time since I
posted an update on Dylann's AMC journey. Mostly this has been due to not
too much going on due to her beloved MD leaving the Shriners Philadelphia last
summer. This has left us in a period of transition as we waited to see where
he was going to end up so we could continue supporting her needs around her
knees and ankles in particular. </span></p>
<p><span style="color: black; font-size: 13.5pt;"><span style="font-family: georgia;">This has been a challenging time
to not have his support. About a year ago she dislocated and broke her
elbow on a trampoline and we had to quickly find a local orthopedist to support
her casting and surgery needed. She has also grown out of her leg braces
and had one brace that continued to have an issue with the lock leading us to
need multiple trips to local orthotists last Spring to keep her ambulation support.
We did find a local orthotist in Waconia that we love and he helped us get
exact replicas of her Shriners braces this Summer but just a bit bigger.
As we worked through all of that, it has been weighing on me what to do next
for her knee and ankle support. If we had continued to work with the
Shriners Philadelphia, Dylann would have had a surgery on her knee this last
summer and more casting on her feet to get them back to flat to the
ground. As of the time of this post, Dr van Bosse has not yet started
taking patients at a new location and some of the surgery's being discussed for
Dylann are time sensitive to complete while she is still growing. <o:p></o:p></span></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;"><span style="font-family: georgia;">Earlier this year, I made a
decision to start looking around for another MD in the event Dr van Bosse was
not up and running by this summer. We met with two doctors in MN that
were new since we tried to find a local doctor 7 years ago for her. One of them
said the same things we heard then which was to remove bones and do very
invasive things as part of their treatment plan. The other one did agree to
follow Dr van Bosse’s treatment plan as is even though he would do a few things
differently and was ready to perform the surgery this summer. We then got
notified late Spring that he was leaving Mpls Shriners which left us back
at square 1.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></p>
<p><span style="color: black; font-size: 13.5pt;"><span style="font-family: georgia;">At that time, I made the tough
decision to schedule a consult with a provider who is very well known in the AMC
community and specifically around knee interventions.<span style="mso-spacerun: yes;"> </span>Many of the children with AMC we know across
the country who do not see Dr van Bosse, see this other provider in
Florida.<span style="mso-spacerun: yes;"> </span>We had a consult with him in
July and follow up in August to hear his treatment recommendations which while
a little different than what our prior MD had suggested, have shown to have
great outcomes for increased knee range of motion in kids with similar knee
contractures to Dylann. After much contemplation and lots of discussion with Dylann,
we decided to schedule surgery with him for 12/6.<span style="mso-spacerun: yes;"> </span>This was not an easy decision for a lot of
reasons; but in particular because we love her prior MD and credit all the
progress she has made to him. It truly came down to the timing of weighing out
waiting for him and her age with the difference in this surgery.<span style="mso-spacerun: yes;"> </span>I also do not prefer to continue to travel
out of state for cares in general; especially considering changing to a much
more expensive city from Philadelphia and what this means financially.<span style="mso-spacerun: yes;"> </span>All that to say, we have and will continue to
always do what is the best for Dylann and feel like in this case, it is.<o:p></o:p></span></span></p>
<p><span style="color: black; font-size: 13.5pt;"><span style="font-family: georgia;">So, what does this mean logistically?
It means Dylann and I leave one week from today to temporarily reside in West Palm
Beach Florida for 6 weeks. Her surgery is scheduled for Tuesday 12/6 then she
has daily physical therapy for the remaining time which is an important piece to
her rehab to get the most knee range of motion possible.<span style="mso-spacerun: yes;"> </span>We will be flying home for 5 days to spend Christmas
here in MN but will predominantly remain in FL most of December and January.<o:p></o:p></span></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;"><span style="font-family: georgia;">Overall, Dylann is doing ok with
this upcoming plan.<span style="mso-spacerun: yes;"> </span>She has some nerves
and is excited to see what this means for her continuing to need her tall brace
to walk.<span style="mso-spacerun: yes;"> </span>She is sad to miss a number of the
Christmas things we usually enjoy as a family but being able to fly home for
the actual Holidays helped her feel better about that. She is feeling sad to be
away from her friends and family.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></p>
<p><span style="color: black; font-size: 13.5pt;"><span style="font-family: georgia;">For me, it is going to be a lot
and this will be painful for her which is never easy to see your child in pain.<span style="mso-spacerun: yes;"> </span>I find the ocean to be my calm happy place so
that is helpful to be in a city that allows us to come and go from there as we
please. I am so thankful to have such a wonderful employer to support me in
supporting Dylann while still working as I can. I am also so thankful for friends
and family who are going to be coming and going to help support and entertain
us down there.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></p>
<p style="-webkit-text-stroke-width: 0px; font-variant-caps: normal; font-variant-ligatures: normal; orphans: 2; text-decoration-color: initial; text-decoration-style: initial; text-decoration-thickness: initial; widows: 2; word-spacing: 0px;"><span style="color: black; font-size: 13.5pt;"><span style="font-family: georgia;">I have been getting asked how
friends and family can support us during this time – one thing that comes to
mind is to send any cards or notes to Dylann during our time so she has fun
things to open and knows people are thinking about her.<span style="mso-spacerun: yes;"> </span>We will be staying at the Florida version of
a Ronald McDonald house for the first three weeks then in an apartment for the
second three weeks. I put the address below for how to reach her from 12/4 to
12/21 before we fly back for a short Christmas visit. Things can also be sent via email to <a href="mailto:dylannsdash@yahoo.com">dylannsdash@yahoo.com</a></span></span></p><p></p><ul style="text-align: left;"><li><span style="background-color: white; font-family: georgia; font-size: 13.5pt;">Dylann Paradeis </span></li><li><span style="background-color: white; font-family: georgia; font-size: 13.5pt;">Quantum House</span></li><li><span style="background: white; color: black; font-size: 13.5pt;"><span style="font-family: georgia;">987 45th Street, West Palm Beach, FL
33407</span></span></li></ul><p></p>
<p></p><p><span style="font-size: medium;">I will plan to keep this updated more regularly as well when we are down there.</span></p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-12933748899451531982021-03-09T06:13:00.010-08:002021-05-31T23:57:11.174-07:0019th trip to Philadelphia <div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/--rL-Zk44Zc8/YEeD5_4BTDI/AAAAAAAAQSE/Q1LetaWtLeQPCcv3WyGwJWrRoENjwDw4wCLcBGAsYHQ/s2048/36DDD417-5D00-4B4F-820C-03E2524FF648.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/--rL-Zk44Zc8/YEeD5_4BTDI/AAAAAAAAQSE/Q1LetaWtLeQPCcv3WyGwJWrRoENjwDw4wCLcBGAsYHQ/s320/36DDD417-5D00-4B4F-820C-03E2524FF648.jpeg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-FzLLh9csgn0/YEeD5_L17oI/AAAAAAAAQSA/hJzwQ_Gq1uYSaI2CKKlh6TUYVI7Weul1gCLcBGAsYHQ/s2048/356221E3-45B8-429D-AC3D-DCCCB82FFB10.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-FzLLh9csgn0/YEeD5_L17oI/AAAAAAAAQSA/hJzwQ_Gq1uYSaI2CKKlh6TUYVI7Weul1gCLcBGAsYHQ/s320/356221E3-45B8-429D-AC3D-DCCCB82FFB10.jpeg" /></a></div><br /><div><br /></div><div><br /></div>Friday was our 19th trip to Philadelphia. I can't believe we're at that number. Time has really flown by.
It was pretty quick and non eventful. <div><br /></div><div>The airports were pretty empty and flying Delta means we get the whole row to ourselves. We landed Thursday afternoon and stayed in a surburb just northwest of the city. </div><div><br /></div><div> We saw our MD first thing Friday morning. He really just said the same things as our last visit in September. Hes recommending basically a repeat next summer of everything we did when she turned 4- 8 ponseti feet casts over a few weeks then: another hip surgery/osteotomy, 8 plate in her right knee, and ankle tenotomies. then into an eight week petrie cast. </div><div><br /></div><div> Her hip has already had two surgeries. The first one at age 2 was to get it into socket. The second at age 4 was to make her socket more rounded as it has formed more in a straight line when dislocated. While hes happy with the progress, he wants her socket even more curved. Right now theres a small part that is getting sll the pressure when she walks and hes concerned over time thatll cause her alot of pain and arthritis. Im honestly on the fence about this. That surgery at 4 was a beast and Dylann was in alot of pain. While I dont want her to have pain later, I also dont want her to have pain now. </div><div><br /></div><div> Her knee I was expecting. Her right knee was straight after her surgery when she was 4 but has regressed to about a 15 degree contracture again as shes grown. She was walking much easier when that was straight with her short brace and now only will wear her tall brace on that leg. Ultimately if shes going to walk without braces or at least not tall ones, getting her leg straight is important. This means putting in what is called an eight plate- a little peice of hardware that goes over the front growth plate. It stops her front growing but keeps the back growing so the knee straightens over time. Once her knee is straight then it gets removed. Usually about 3-6 months. Its an easy procedure however it was very very painful the first time Dylann had it done. She then has to be in casts for 6 -8 weeks after. </div><div><br /></div><div> Her feet are regressing so she needs the casts and a heel cord release again to get them in the right position. Shes had this so many times I cant even recall. Maybe 100-150 casts and 5-7 heel cord releases. </div><div><br /></div><div> So it probably means spending most of summer 2022 in Philadelphia. This year we are just going back in the summer for a check up and get fitted for new braces then picking them up before school starts. </div><div><br /></div><div> We are in a research study for AMC so after our appointment we gave our samples for the genetic testing panels. The rest of the day we just hung out in the city and ran errands and went back to the airport at 4 for our even flight. We met Jeremy and Micah in Destin and just going to relax in the FL sun for the week!
</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-81954945780869820422020-07-17T12:45:00.000-07:002020-07-17T12:45:48.308-07:0017th Philly TripGetting close to 20 Philadelphia visits for Miss Dylann since she was 1. I still remember our first visit 5 years ago and coming home thinking - I have no idea how on earth 🌏 we’re going to have our MD be on the other side of the County. This is literal insanity to even be considering this. For those of you newer to our journey, we had seen 4 Orthopedic MDs in MN with minimal success. Saying things like she’d never walk so no plans for casting or to try any interventions or lets focus on getting her in a good position for her wheelchair. Feeling defeated and confused why everyone was giving up on my 7 month old, we met Dr vanBosse at the MPLS AMCSI conference. He told us don’t let anyone perform surgeries and get on his wait list. So we did- for a year- and showed up here for appointment #1 on 7/6/15. <div><br></div><div>When questioning back then how to continue to travel for care lots of others AMC mommas said- you just figure it out. So we did. Best decision ever! Now she doesn’t stop moving and not much can get in her way. :)</div><div><br></div><div>So how are things going... some background, we had a braces mishap in March. We were in FL for Spring Break and let Dylann wear her braces in the Ocean. They got pretty sandy so Jeremy hit them on the ground to shake the sand out and they both cracked on the heel. 😳 We tried to do what we could to salvage the situation with a little glue and gorilla tape since all clinics were closing due to COVID. The cracks turned into chunks coming off the braces. We had an appointment in May but I didn’t feel comfortable coming then with the Northeast COVID numbers so we bumped it today. We debated moving it again but our braces were in a pretty dire state so here we are. </div><div><br></div><div>Our travel experience was pretty good. Airport was pretty empty, plane 1/3 full, no one at the car rental place, and everything on time. Full time mask wearing has been an adjustment. There was on guy on the plane who wasn’t having it and threw a few fits when he got called out. 🤣 Got in late and up early for the hospital. </div><div style="text-align: left;"><img src="https://drive.google.com/uc?export=view&id=1rD2zl7DHkLyo7eVHTiOczIdGJpc2uuPB" alt="https://drive.google.com/uc?export=view&id=1rD2zl7DHkLyo7eVHTiOczIdGJpc2uuPB" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"><br></div><div><br></div><div>Dylann was asked to be a part of a clinical research project on AMC so we spent time taking pictures and answering a lot of questions. If she is part of the next round we get family genetic testing!!! </div><div><br></div><div>Our visit didn’t provide the greatest news. We had a hip X-ray and VB said he’s no longer happy with its progress. He wants her to have a third hip surgery in a year 😢. We had a talk about the risks of not doing it. She also needs another knee procedure on righty to get it straight again ... and more feet casts. </div><div><br></div><div>So he’s recommending next summer we do 3 weeks of casts then hip/knee/ankle surgery and 6 weeks back in the Petrie cast. She was in this on her 4th birthday - it’s the long leg casts with the bar in the middle. UGGG.</div><div><br></div><div>Then I had to face to music with the brace shop- she wasn’t very happy with us and said our braces were in a “catastrophic state”. 🤣😂. So we had to measure for new ones then they made some short term changes to the current ones until we come back next month to pick up the new ones.</div><div><br></div><div>So- we’re tired and a little sad. We’re going to hunker down for a few days in a condo by the ocean and relax then make our way back home. That should help! We miss our Dakota Melon but she’s staying with a house with 3 dogs and appears to be having the time of her life! 🐶</div><div><br></div><div><br></div>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-4454037761341525072019-08-10T06:09:00.000-07:002019-08-10T06:10:48.349-07:0015th Philly TripJust over halfway done! This is the going to be the longest visit and was the first time we drove. Dylann’s feet were started by to turn in again. This is common for arthrogrypotic feet. As the child grows the feet want to back to their clubbed position. This is corrected by doing ponseti casting which is a series of casts changed every 4-7 days while slowly moving into the right position. An average set is about 8 casts. Dylann just needed 4 which was good news as that meant a 2.5 week trip in stead of 4. After the casts then she has a minor surgery to lengthen her Achilles’ tendon and pull her heel down. That is scheduled for next Wed.
We left MN Wednesday 7/31 in the afternoon and made it almost halfway to Indiana. We arrived in Philly Thursday evening and luckily got into the Ronald McDonald House. That always makes things much easier. Dylann has her first cast last Friday. She did amazing and left the room walking on them. She’s had no pain. This is a drastic difference from 2 years ago when she was up crying all night.
<a href="https://1.bp.blogspot.com/-MPTTjW5udqA/XU1vGr3F7UI/AAAAAAAAIYA/t2CKo5h_OyAIJWt8Ea7rW35dXdN4l7F0gCLcBGAs/s1600/5A2305BC-744F-4E2C-B1FA-4C9DB958631B.jpeg" imageanchor="1"><img border="0" src="https://1.bp.blogspot.com/-MPTTjW5udqA/XU1vGr3F7UI/AAAAAAAAIYA/t2CKo5h_OyAIJWt8Ea7rW35dXdN4l7F0gCLcBGAs/s320/5A2305BC-744F-4E2C-B1FA-4C9DB958631B.jpeg" width="240" height="320" data-original-width="1200" data-original-height="1600" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"></a><a href="https://2.bp.blogspot.com/-aY6x0SdmXPc/XU1vG--4CcI/AAAAAAAAIYE/bTnwD_rS6eIliRxaDjxIS_f-Pq8ajUPmQCLcBGAs/s1600/EAF882B4-701F-467E-A201-83A280126570.jpeg" imageanchor="1"><img border="0" src="https://2.bp.blogspot.com/-aY6x0SdmXPc/XU1vG--4CcI/AAAAAAAAIYE/bTnwD_rS6eIliRxaDjxIS_f-Pq8ajUPmQCLcBGAs/s320/EAF882B4-701F-467E-A201-83A280126570.jpeg" width="240" height="320" data-original-width="1200" data-original-height="1600" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"></a>
Saturday we went and got some school clothes at King of Prussia mall. There happened to be a LOL doll fashion show. Dylann was loving her best life with that!<div><br></div><div>Sunday we brought Jeremy to the airport so he could work for a week the rejoin us. The kids and I then walked around downtown Philly and looked around before returning to the Ronald McDonald House. Micah was able to join a 5 star Pokemon Go raid with some others and won a legendary Pokémon so he was pretty pumped about that.</div><div><br></div><div>Monday was cast number two. The place was so packed so we were there all day pretty much for a 940 appointment. She has a history of hating the cast saw but after a few minutes of nervousness she didn’t make a peep getting them removed. </div><div><br></div><div><img src="https://drive.google.com/uc?export=view&id=1zizOLgDV9iIviAbcStTK5LOAxCYdgCUQ" alt="https://drive.google.com/uc?export=view&id=1zizOLgDV9iIviAbcStTK5LOAxCYdgCUQ" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"><br></div><div><br></div><div>That night we played with friends at the Ronald McDonald House and was part of an improv story show.</div><div><br></div><div><img src="https://drive.google.com/uc?export=view&id=1tMm52fH_XYBZf_b2l8_zMwYHkiKhuWzL" alt="https://drive.google.com/uc?export=view&id=1tMm52fH_XYBZf_b2l8_zMwYHkiKhuWzL" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"><br></div><div><br></div><div><img src="https://drive.google.com/uc?export=view&id=1BoN8tZ9MGYG9cSfuxoglSAvs5vo15Zv2" alt="https://drive.google.com/uc?export=view&id=1BoN8tZ9MGYG9cSfuxoglSAvs5vo15Zv2" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"><br></div><div><br></div><div>Tuesday we decided we needed a little R and R. The kids and I went to Connecticut and stayed in a little beach cottage for a few nights. The town was so cute. We sat on the beach, watched movies, and rested.</div><div><br></div><div><img src="https://drive.google.com/uc?export=view&id=1zhL0l6RrLGNAWDvT4eTWk_OB4AMrTMfq" alt="https://drive.google.com/uc?export=view&id=1zhL0l6RrLGNAWDvT4eTWk_OB4AMrTMfq" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"><br></div><div><span style="font-size: 12pt; -webkit-text-size-adjust: 100%; display: inline !important;"><br></span></div><div><span style="font-size: 12pt; -webkit-text-size-adjust: 100%; display: inline !important;">Friday morning - cast change again! This time we were in and out and had minimal nervousness from Dylann. She likes her pink casts! That color has been the only constant.</span><br></div><div><span style="font-size: 12pt; -webkit-text-size-adjust: 100%; display: inline !important;"><br></span></div><div><span style="font-size: 12pt; -webkit-text-size-adjust: 100%; display: inline !important;"><img src="https://drive.google.com/uc?export=view&id=1_CyVacV_lvd1RDlJml5kDAWJ-JOalKPv" alt="https://drive.google.com/uc?export=view&id=1_CyVacV_lvd1RDlJml5kDAWJ-JOalKPv" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"><br></span></div><div><span style="font-size: 12pt; -webkit-text-size-adjust: 100%; display: inline !important;"><br></span></div><div><span style="font-size: 12pt; -webkit-text-size-adjust: 100%; display: inline !important;">Then went to pick up daddy at the airport! Overall things have been going better then expected. Dylann is such a trooper and hasn’t had any issues with the casts. Micah’s been a big help- most of the time 😜. We’ve mixed in some fun so they’re hanging in there. Micah’s pretty homesick. I did forget how the public responded to casts as it’s been a few years since she’s had them. Lots of stares, looks of sorrow, comments like “look at the poor girl”. Those that actually talked tous have asked how she broke her legs, and prayed for her to have a speedy recovery. I should be used to this by now but it doesn’t really seem to get easier. One mom carried around handouts about the condition to spread awareness and just gave them out as this happened to raise awareness and not have to retell the story each time. I like that andvthinking about following suit. </span></div><div><span style="font-size: 12pt; -webkit-text-size-adjust: 100%; display: inline !important;"><br></span></div><div><span style="font-size: 12pt; -webkit-text-size-adjust: 100%; display: inline !important;">We’re here for another week or so. We’re going to tour NYC for a day the hoping to get back in Ronald McDonald House. One more cast change left, a surgery next Wednesday on her ankles for an Achilles tenotomy. Depending on her recovery then we will start the drive back home!</span></div><div><span style="font-size: 12pt; -webkit-text-size-adjust: 100%; display: inline !important;"><br></span></div>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com1tag:blogger.com,1999:blog-3987630921829101889.post-14766774822768314662019-01-28T19:48:00.001-08:002019-08-08T21:13:32.819-07:0013th and 14th visit to PhillyI just realized I never wrote about our last trip either. I few weeks before Thanksgiving Dylann, Nichole, and I went for a long weekend. It was eventful!<p><br></p><p>I was trying to save PTO days so I could take all Christmas week off so decided to book a Thursday evening flight for our Friday appt. This meant no Ronald McDonald House because you have to arrive by 8. Then I realized I wasn’t comfortable with a midnight cab ride with a preschooler. So I booked a car service to pick us up and bring us to our hotel. Ended up being costly decision lol.<br></p><p><br></p><p>We arrived at the hotel to find out we had no room. So it’s 1am and we’re sitting in the lobby finding us somewhere else. Mind you I do lots of research when I travel so I wanted to be in this part of the city to be in safe walking area for things to do. Now that’s out the window. We end up being put in a cab anyways to a hotel a few miles away. The one positive is they paid that night if my room.</p><p><br></p><p>Friday we had a quick appointment. Mostly check up and brace fitting. Then that night we did some boutique shopping and had a girls night. This hotel was on a side of town I’d wanted to try but hadn’t so ended up being a nice shift.</p><p><br></p><p><br></p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-4398884324337544472018-06-26T19:07:00.004-07:002018-06-27T17:06:52.889-07:0012th visit to Philly <p>Jeremy and I were trying to figure out how many trips to Philly there’s been so I went back and counted. Twelve. In three years almost to the day. Our first trip was 4th of July weekend 2015. Here are some pics from back then.</p>
<p><img src="https://lh3.googleusercontent.com/-kf4zm5Tpm7U/WzMGsoX4baI/AAAAAAAAClM/2S-yhDp6c8clcdnmTgW9N0kmtEjTkRiEgCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-ooJxqrLGmmc/WzMGtbt75dI/AAAAAAAAClQ/qIZRMJovFX4nPRVVpKnfmD0N--UKeI9GgCHMYCw/%255BUNSET%255D" alt=""><br></p>
<p>I remember thinking back then I had no idea how we were going to make it work to have a physician halfway across the county from us. But, we just made it work and here we are...for the 12th time.</p>
<p>We saw Dr vanBosse Friday for an office visit and X-rays. He had Dylann do a lot of walking in her tall and short braces. Since Dylann doesn’t love to unlock her tall ones to practice walking, the next time she needs braces remade (prob 6-9 months) she’s going to get GRAFOs- which are shorter braces but help with the knee extension when she walks. Pic below. She did decide to walk a little with her tall ones unlocked after her appt.</p><p><img src="https://lh3.googleusercontent.com/-Eny9vnHums0/WzQcCfZB-bI/AAAAAAAAClw/_NPrqFLRNnwEiSGphkqqoFW6UwWdJWb-wCHMYCw/%255BUNSET%255D" alt=""></p><p>He spent some time trying to pep talk her into wearing her braces all night. The risk is big by not sleeping in them as her knee could start to develop a bending contracture again after all this work. She ignored most of it and told him she didn’t like them LOL. She has however slept in them since Friday which hasn’t happened in 4 months! Will see if this keeps up. We’ve tried everything.</p><p>He looked at her hip progress. Overall he felt things looked good. Her socket is starting to round out nicely from her surgery. He said the space between the socket and femur head is a little wider than her other one however. That might mean in a few years he will want to do a third surgery. 😳 I didn’t even ask questions cause I’m honestly not sure we’re in for another one. I’d really need to understand what we’re gaining and risks of not doing it. It does not seem worth it unless it prevents long term major issues.. and I mean major.</p><p>We talked a little about Thursday, (tomorrow). Tomorrow Dylann is having another surgery. This time it’s to remove the pin in her hip and the 8 plates from her right knee. Should be a day surgery but Dylann likes to spike fevers after surgeries so not sure. Sounds like little to no pain ... hoping that’s true. We’re just hanging at the Ronald McDonald house watching a movie. Check in time is 6:30am for surgery. Send her some good thoughts tomorrow!</p><p><img src="https://lh3.googleusercontent.com/-wq5u-9z3JXQ/WzQgdah3YoI/AAAAAAAACl8/lw6SxTj6qZ8vM-LI0Bh78ZSJcTbUaZP8wCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-F817t0aQQqI/WzQgec6UE4I/AAAAAAAACmA/LkT9XcysdAYudI6k7MLqPrDz8EeW7BHdQCHMYCw/%255BUNSET%255D" alt=""><br></p><p>Also remember Saturday is AMC Awareness Day! Wear your blue and tag us on Facebook.</p>
Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com1tag:blogger.com,1999:blog-3987630921829101889.post-17815987582625103922018-05-30T19:49:00.001-07:002018-05-30T19:50:01.674-07:00Next philly trip<p>It’s been a bit since I posted. Things are going pretty well. Dylann had a second set of X-rays to check on her knee and that knee is straight! We go back to Philly in three weeks for an outpatient visit and then surgery to remove the 8 plates in her knee and pin in her hip. Should be a same day surgery... fingers crossed.<p></p></p><p>She’s been walking just a little bit without her braces but doesn’t seem all that interested in that at this point. She also now hates sleeping in her braces so we don’t get much sleep around here. She screams in pain between 10-12 each night and is not consolable. Hoping the MD has more ideas when we are there. The biggest issue is her knee needs to stay stretched out otherwise the chances of her regressing back to bent knee when she’s older is high. She’s just not having it and even says she doesn’t care if she needs more surgery cause of it.</p><p>Otherwise that’s about it. Just working on planning this years Dash!</p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-92129001975217829952018-01-29T19:25:00.004-08:002018-01-29T20:32:16.107-08:00Updates and special needs parenting vulnerability post<p>Dylann is doing great. I can't believe Thursday I can say it's three months post op! She's walking almost all day long in her KAFOs with short breaks and some use of her walker. We are doing twice a week physical therapy to work on regaining her bending ability in her knees that she lost while being casted and to start strengthing her hips and thighs. We have a long way to go but she's making great strides! I'm so grateful for my work that has supported me in working from home close to full time. I have a PCA who helps Dylann while I work but allows me to be much more available at home and it is helping make everything feel much more manageable. Being able to see Dylann more over lunch times and before and after work has managed to move me up the ranks to "her favorite" again. A place daddy has held for a better part of a year. :)
</p>
<p>Dylann has to sleep in her tall braces all night which I was very concerned about initially. She actually is doing fairly well with that. It's only been a few nights I had to cave and removed them so we could both get some sleep. Her right foot has been super super sensitive since surgery. Her MD said it was probably nerve stretching. We are finally seeing some improvements there where she will allow some touching of it without screaming. She refused a pedicure with me last week, her favorite thing ever, so I know she's still not fully recovered. Doc said it would take time.</p>
<p>Next steps are to continue with lots of therapy, X-ray in March here, then return to Philly in April for a week long affair. She'll have some outpatient visits and then outpatient surgery to remove the pin in her hip and the plate in her knee. Sounds like it's same day procedure so hoping that sticks. She's already very agitated when we talk about going back for that visit. Her resiliency is inspiring and I learn from it daily! Also she has the strongest biceps I've seen in a 4 year old. It's hard to see here but she has a big bump!</p>
<p><img src="https://lh3.googleusercontent.com/--KmtcjX0YeU/Wm_lKiJtdRI/AAAAAAAACiI/lKRq4aTRW2wvgxf65HmGjB2rnGv5mTmzACHMYCw/%255BUNSET%255D" alt=""><br></p>
<p><img src="https://lh3.googleusercontent.com/-iSSMzIFAd64/Wm_lgy0DN8I/AAAAAAAACiM/6hl98g_SnSoZo9SQTWv8uq9qmBifC-yHgCHMYCw/%255BUNSET%255D" alt=""><br></p><p>Alright, so here's my vulnerability post for the day. I debated sharing this but I think it sheds light on the multifaceted things that come up for us. Most of the time I feel like I got this figured out, things are going fine. Until I realize maybe I don't lol. Maybe there are hard days even when I don't realize it. </p><p>I lost it today. One of the hardest things when you have a child with special needs is going in public. It's so full of emotion that it really takes all the strength possible to be educating others on her condition, or trying to let the stares not bother you and being thankful she's still too little to notice or trying your best to ensure she experiences everything I would want a 4 year to and trying hard not to be sad when there are things she just can't. Frankly it also is a lot of energy with finding special places to change her braces when she has to use the restroom and building in extra time to support her independence in getting places on her own. It can be a lot.</p><p>I honestly have probably been asked about her circumstances 400 times in 4 years. I truly do welcome people to ask questions. I prefer that over stares. It gives me the chance to share her diagnosis and experience and to brag about what she's overcome from what we were initially told. I've been asked about her in a number of ways: "what happened to her?" to "did you break her legs?" to "OMG! why is she like that?". Every time I smile and say my same lines. I've debated getting shirts that explain things or at least say "she has AMC" or creating cards that explains everything and I could just hand them out and not talk. But, so far I patiently tell her story and smile. For 4 years.</p><p>Today was different. I couldn't tell you why. I was in a good mood, nothing out of the ordinary. I take Micah to karate class and Dylann wants to come with. People are nice and inclusive to her there so she tags along and watches him and plays. When I get there a father asks me why she's in braces. I do my usual reply explaining her diagnosis and her treatments ending with my favorite punchline "and they said she'd never walk but look at her now."</p><p>The fathers mother (grandma) walks over and says "but, will she ever be normal?". Yep, game over. I snapped. I snapped at this 70 something year old grandma in the middle of karate class who I know had no ill will behind her question and I very loudly and rudely said "SHES NORMAL NOW!". She actually surprisingly looked unfazed and said "but I mean, will she ever be normal, like walk without braces?" I'm like " I didn't realize that was the definition of normal."</p><p>People stared at me and I immediately felt guilty and I walked away. I managed to ignore the man at the State Fair who was loudly telling everyone how slow she was walking and creating a line. I managed to politely respond to the many times I've been asked if I broke my daughters legs. I managed to ignore the lady who came up to me at Cub when Dylann was in her first cast telling me she'd pray for us so the horrible things that were done that led to her cast wouldn't happen to her again. That one actually stunned me into silence so I might have responded if shock hadn't taken over. 😳🤔. Nope, the grandma in the middle of karate class is where I decide to snap. It wasn't my best moment. Still feeling guilty 5 hours later.<br></p><p>I'm thankful for my mom support group. Tip to any mom with kiddo with newly identified special needs, find a mom support group. Mine immediately came to my guilt rescue and all had done the same thing at some point. </p><p>Moral of the story... well probably a lot of things. </p><p>One, I'm going to have to apologize to her next week 😒. </p><p>Two, as strong and with it as I feel most of the time, I have moments like this. They aren't pretty. I'm human so expect others might do the same. I'm giving myself grace on this one.</p><p>Three, I'd encourage those reading this to ask questions when you're curious to those around you but be mindful of the approach. They probably have a lot going on. Things are tough and we want to protect our kids at all costs.</p><p>Four, no I didn't break her legs.</p><p>Alright, time to watch shameless from yesterday! </p>
Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com1tag:blogger.com,1999:blog-3987630921829101889.post-41520292871730215832017-12-15T19:47:00.001-08:002017-12-15T19:48:08.716-08:00Post op visit Dec 2017<p>Got to Philly yesterday and we're lucky again to get a room at the Ronald McDonald house! We saw our dear friend Katee!<p></p></p><p><img src="https://lh3.googleusercontent.com/-Z25-VLZvIJY/WjSUfefWAwI/AAAAAAAACgk/ygOWwizfFAIikjIUJsAan14B9yf3anJOgCHMYCw/%255BUNSET%255D" alt=""><br></p><p>This morning we got up bright and early to get the cast off. </p><p><img src="https://lh3.googleusercontent.com/-YP5WwTupzxg/WjSUpEr8q7I/AAAAAAAACgo/KpqZEFsWRF0fZuVPfgisYdFlSiZfpv8jQCHMYCw/%255BUNSET%255D" alt=""><br></p><p>The saw scares her pretty significantly at this point so it was a rough hour Miss Dylann getting it off. But look at those beautiful straight feetsies!</p><p><img src="https://lh3.googleusercontent.com/-rIaIVBgOSqc/WjSVEjb8g9I/AAAAAAAACgw/minaTIyj2j4dD0yGj_CEitZCGI843EZqwCHMYCw/%255BUNSET%255D" alt=""><br></p><p>Next we tried on our new braces the got a hip X-ray. Then we waited to see our MD. He said her hip looks great. It's healing nicely and she was given clearance to weight bare in braces!!</p><p>He said her right knee responded so well to the procedure that her leg is almost straight. He plans to take the plate blocking the growth plate out in 4 months!! She does still complain it hurts.</p><p>The MD had her do some standing to see how the braces fit and how things were looking. The only sad part to hear is she has to sleep in these tall braces for years to keep her knee and feet in position. That's going to be a fight.</p><p><img src="https://lh3.googleusercontent.com/-74qxkTuh3iU/WjSWXyjbwbI/AAAAAAAAChA/z9UbHl2ByTY3BJ-NzjBHjt9P_v8nezj3QCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-qcsdggBkyIE/WjSWYUn55tI/AAAAAAAAChE/0EAhzA98dt8usOyV_8IzLq1gBjiAzk-FwCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/--JNpDo10Mu4/WjSWZqKvOII/AAAAAAAAChI/MS__LAQ2FZwBYUMKvw4Kz3mNsoA4C39HwCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/--hgrQ1HA7dM/WjSWaOSwhEI/AAAAAAAAChM/JbJFpIrenZEU61nXn-Oo6_zs96mIjCMSQCHMYCw/%255BUNSET%255D" alt=""></p><p>She had some soreness tonight so stayed in her wheelchair most of the night. Finally she agreed right before bed to let me soak her feet and cut her nails. She then asked to walk and managed to walk like 10 steps independently again!! She continues to amaze me everyday!!!</p><p><br></p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com1tag:blogger.com,1999:blog-3987630921829101889.post-42279936918206488142017-12-15T19:33:00.001-08:002017-12-15T19:33:52.458-08:00Surgery Day Philly Nov 2017<p>I realized that I posted all Dylanns updates on Facebook but not on here. I'm hoping someday Dylann will find it helpful to look back on all these events so decided to summarize how things went.<p></p></p><p>Surgery was on 11/1. She had a left hip osteotomy, right knee 8plates, removal of left femur plates, bilateral knee tendon releases, and bilateral Achilles tenotomies. The surgery took 4 hours but with all the prep and other things, about 8 from when she went back to when we saw her in ICU. She got an epidural for pain management so spent the first two days in the ICU. He said the surgery went great, her left knee straightened with just tendon releases and then the right improved a ton as well but did need the plates.</p><p>First day went just fine. She mostly slept and pain seemed controlled for the most part. </p><p><img src="https://lh3.googleusercontent.com/-YNMacFM2dbs/WjSRzB0NjkI/AAAAAAAACgM/YuldW-VxDYoRFq6oe_39P4DmSBaRJA01wCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-4BXrvV6F8Hw/WjSRzks0JQI/AAAAAAAACgQ/7AYBPkaGF9oMzEdkEEgxHxxs6cQ8VaOtgCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-J_FunS1dBII/WjSR0L0EokI/AAAAAAAACgU/Huv7b5V1NWsckCSvW0Y_X1Rp3NSY-4mNACHMYCw/%255BUNSET%255D" alt=""><br></p><p>Second evening she had a pretty large meltdown that took Valium and three of us to calm her. She was upset we couldn't hold her and complained about her knee. Her O2 plummeted from there so she had to spend the night on oxygen.</p><p>Friday they worked to get her off the epidural and she had intermittent pain. We moved out of ICU onto the 5th floor in a room for 4. First night we didn't have a roommate. Her O2 still was falling too low so she spent another night On the o2. She also started getting fevers. </p><p>Saturday we got her off the oxygen but her fevers kept happening once a day and we couldn't leave until fever free of 24 hours. We were finally discharged Monday at 12 just in time to catch our 4pm flight. The plane ride went really well!</p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-92044674715431102952017-10-30T18:19:00.002-07:002017-10-31T06:30:20.794-07:00Continued Philly Fun<p>Dylann and I had a nice time this weekend. Saturday we found a festive in downtown Philly and went trick or treating.
</p>
<p><img src="https://lh3.googleusercontent.com/-VQI_dIlBDEw/WffNKPg9wjI/AAAAAAAACcc/GIwOwQGfBJQWI4vm5fH1Bzb6h039c3eWQCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-YEXp_VtbPWY/WffNNoUuzOI/AAAAAAAACcg/vI7iNp7zOrQyWM-HXbB1nUBJ5kW_qOdTQCHMYCw/%255BUNSET%255D" alt=""><br></p>
<p>What a sweet Moana :)</p>
<p>Sunday we hung with our new friend Katee. We watched Moana in the theater and did lots of playing at the Ronald McDonald house.</p>
<p>Today was time to get our last foot cast! We got to be in the fancy cast room!</p>
<p><img src="https://lh3.googleusercontent.com/-O_-RtMWAHTQ/WffN1z3eU6I/AAAAAAAACcs/AA1RzNIg1LETU8rU1w5zXyPmNc4G-__KwCHMYCw/%255BUNSET%255D" alt=""><br></p>
<p>Cast removal was traumatic again but then got some time to enjoy my legs castless for a bit. Look at those straight feetsies! 😍</p>
<p><img src="https://lh3.googleusercontent.com/-K6zMisHm21I/WffOOYhg2TI/AAAAAAAACcw/d0Y7x0oXclMNZdDPHFrsB0lBUiTKGTGdgCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-47D7Ww8VV7c/WffOP99I12I/AAAAAAAACc0/-Qkdszo3ZOUqO-3R9nUYgieU-FGif_gXgCHMYCw/%255BUNSET%255D" alt=""><br></p>
<p>Went back to purple/pink casts.</p>
<p><img src="https://lh3.googleusercontent.com/-d4q_tIpPqQA/WffOeqoY2lI/AAAAAAAACc8/JPoEP5v9e_sjKZHz4H4vF5XXobb4wOqSwCHMYCw/%255BUNSET%255D" alt=""><br></p>
<p>Spent the evening playing with Katee and going to music therapy. Both our besties are gone now so Dylann and I are on our own tomorrow. </p>
<p><img src="https://lh3.googleusercontent.com/-qkf2jqPeUaY/WffO3klJwPI/AAAAAAAACdI/Ktx-wRVt_i0jEczHBRNbbm1fncbaKne_gCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-DNjDTJgicaI/WffO5QnyPzI/AAAAAAAACdM/261sPYSynT0AooJLvA5p9wb81L2zFY1iwCHMYCw/%255BUNSET%255D" alt=""><br></p>
<p>Id be lying if I said I'm not insanely nervous about Wednesday. She's been asking lots of questions about it and I'm sad to have her be in such pain again. Keep her in your thoughts and prayers. She'll be in surgery probably from 7:30am to 2 or 3pm. Thanks so much to folks who have sent her things. We know she's very loved. 😍 Sweetest little one.</p>
Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com2tag:blogger.com,1999:blog-3987630921829101889.post-71795589131735205802017-10-27T12:28:00.001-07:002017-10-27T12:54:57.476-07:00Start off to 10th Trip to Philadelphia<p>It's safe to say at this point that Dylann and I are really good at travelling to Philadelphia. Most of what I had wanted done prior to getting prepared was done, so that always helps. The only main hiccup was getting her rental reclining wheelchair. They told me the week before we left that I wouldn't get it on time after a number of mishaps on their end. I decided to try to find another way and borrowed some options from neighbors of mine. They ended up calling me a few days before I left and said they were going to deliver it that day or the next day and were going to call me back with the time. A few hours later my neighbor was calling me as she attempted to go sign for it and they wouldn't let her and they hadn't called me back with the time so I was still in at work a half hour away. I raced home to find out that somehow our DME company had ordered us an entire medical set up - bed that could raise her feet and/or head, a lift to get her out of bed as well as up and down stairs, a bathroom set up and the wrong size wheelchair. So that all got sent back and was a giant waste of my time. They aren't the most organized place I have worked with.</p>
<p>Anyways, we were able to use what we had for now and can make adjustments later if needed. My aunt and uncle brought us to the airport Thursday. We had a pretty easy flight and Dylann did great. </p><p><img src="https://lh3.googleusercontent.com/-nyotQaAKc4k/WfOLxkCxa6I/AAAAAAAACa0/Jhyv2UMD7-c6ghQhiKPSl8wPchZjlTTWACHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-f8M6CGFjjuE/WfOLyiDEHDI/AAAAAAAACa4/hUxiqLKzURsT94quHfu_KHr8mzNsMyFngCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-AER7CEEw22w/WfOLz7qI2gI/AAAAAAAACa8/RJuScL-IDEI1G-XCvqoYdz5nas9pX53WwCHMYCw/%255BUNSET%255D" alt=""><br></p><p> The car rental went flawless and we decided, for the first time, to use Thrifty and the Shriners contact to help coordinate it. I ended up getting $100 off, an upgrade to an SUV for free, and a free car seat for the time. We got in the Ronald McDonald House which is always such a blessing for the amount of stress being there is alleviated. Dylann as usual was spoiled when we got here last night with toys and volunteers playing with her!</p><p>Casting went fairly well. She now is very upset with the saw sound so that's a pretty rough 15 minutes for her to get them off. Her new doll kept her happy and she picked new colors! Sounds like her surgery will be about 6-7 hours next Wednesday.</p><p><img src="https://lh3.googleusercontent.com/-wJFyMNKsJFA/WfOMkPqib1I/AAAAAAAACbI/p_15QAQltQwE2jeSCEhpBBeUCv89MLvBwCHMYCw/%255BUNSET%255D" alt=""><br></p><p><img src="https://lh3.googleusercontent.com/-BkoXdzSvIzE/WfOMzHKdXyI/AAAAAAAACbQ/jeXZiUG4u4kiVN3G9JgUihWa_55tdPfrgCHMYCw/%255BUNSET%255D" alt=""><br></p><p>After casting we ran lots of errands to bank, post office, and grocery store. When we got back to the Ronald McDonald house house just a bit ago we met a new friend who sees our MD. He was in the cast that Dylanns going to be in next week so we went over to chat. He actually had surgery two days ago and is already discharged so that initially made me feel relieved. Well the more I talked to Mom it sounds like it's been kind of horrible. He's still in a ton of pain and begging to go get the cast off 😩. So now I'm nervous again. They are from Singapore and staying here for the month he's in it. Poor kiddo did not look happy. </p><p>So now Dyl is resting then wants to play with her buddy who we found out is coming today. We plan to do some Halloween events this weekend and relax. Weather is beautiful at 70 and sunny!</p><p>Also, lots of people have been asking where they can send Dyl a card so I'll just post our address on here as well. Our plan right now is to head back Monday 11/6.</p><p>Phila Ronald McDonald house</p><p>ATTN Dylann paradeis </p><p>100 East Erie Street Room 204</p><p>Philadelphia, PA 19134</p><p><br></p>
Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-90200550337946431212017-10-12T19:12:00.001-07:002017-10-12T19:12:16.457-07:00Halfway through Casts<p>Tuesday marked the 4th cast meaning we're halfway done with serial casting! Dylann and I went down to Shriners to change her casts. She was less happy then in Philly. Mostly she hates the saw so once ther child life specialist got her distracted, it went ok. She stuck with the puppy paws for one more week. The MD said her one foot was making good progress, the other one medium... that's what I was expecting.</p><p><img src="https://lh3.googleusercontent.com/-FUoYd1gGraI/WeAeaVkSmGI/AAAAAAAACY8/O1zO5oox8LUZMN9QfemF01ygSA4v4BGDQCHMYCw/%255BUNSET%255D" alt=""><br></p><p>Most of the upcoming trip is planned. We leave in two weeks from today and are there about two weeks. Dyl and I are going first then Jeremy will join us 10/31. Her surgery is 7:30am on wed 11/1. I anticipate she'll be in there for 6-8 hours so that day is going to be horrible. Hopefully only 2-3 nights in the hospital after. The only main thing left to get done is her wheelchair here that we need to rent... the DME provider is being difficult. I'm hoping to have it so I can just fly that one with me instead of the having two chairs to bring back. Not sure the timing is going to work at this point. Oh and Dylann and I need a ride to the airport 10/26 getting there at 11 if anyone can do that! Otherwise we're ready as we are going to be.</p><p>I did get the call this week that her cast removal will be 12/15 at 8:30am!!! So 6 weeks in cast is set and she hopefully can enjoy Christmas cast and pain free! I was worried 😩 the holidays would add weeks on.</p><p>She continues to rock all this... the rest of us probably get C+s 😳.</p><p><img src="https://lh3.googleusercontent.com/-yESNxa6PF6E/WeAg6mEvlqI/AAAAAAAACZM/AzLzevWHcMcdPKMEZlz-gLZiBR2lmxsUgCHMYCw/%255BUNSET%255D" alt=""><br></p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-18949377899755751162017-10-06T18:19:00.001-07:002017-10-06T18:19:47.330-07:00A week in..<p>.to our 3-4 month journey. Overall things have gone well since we got home Tuesday. Wednesday morning we had an IEP meeting and then she was able to join her friends back at preschool!<p></p></p><p><img src="https://lh3.googleusercontent.com/-uufvCoqvPbc/Wdgnl1seU4I/AAAAAAAACXQ/EbtcT-64YdQ4DPKYLeU0r-m1nwSKuEXiwCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-bTuhKSDHCO8/Wdgnm41wNgI/AAAAAAAACXU/k6tmAsIfwFYF1nKyiCSR9vHwzN6wksz0wCHMYCw/%255BUNSET%255D" alt=""><br></p><p>Thursday daddy took her down to get her casts changed. Sounds like this was not a good experience for anyone. She's terrified now of the saw to remove the casts. The Mpls Shriners MD had to take a break to let her calm as nothing was helping. They ended up having the social worker come and play with her to keep her distracted. This ended up working and once the casts came off she was her normal perky self. I love the colors she picked... blue puppy paws. Her feet are looking good after 3 casts.<img src="https://lh3.googleusercontent.com/-ZkWJ2AiA278/WdgowyDg8MI/AAAAAAAACXk/Mmz0lyQ7eeoXwsuDdroi5VbEK7Nvu577gCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-rJiwKAZFCsI/Wdgoq9VBhMI/AAAAAAAACXg/fVm3k1EYFxcvZw1Oc5LoaWPMdj4S_rywQCHMYCw/%255BUNSET%255D" alt=""></p><p>Today she went and saw her favorite Angel for her CST appointment. This always makes her in a better space and can't believe we've been seeming Angel since Dyl was 5 days old! We drive to Lindstrom now to keep things going!</p><p>Dylann is sleeping better and complaining of her knee less. Her temperament is so amazing! She spent some time today taking selfies with her grandma and grandpa.</p><p><img src="https://lh3.googleusercontent.com/-wKK9AeL0irA/WdgqIVXWEqI/AAAAAAAACXw/wPwNEPYFr24_md8HbRsq4XjrcnZm51MjACHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-_VDWWBJloCs/WdgqIwDJpdI/AAAAAAAACX0/qSRhF-Sm5FQaZ7lF8l0TC3ssnx6of3pqACHMYCw/%255BUNSET%255D" alt=""> </p><p>Finalized next trip plans so things are falling into place. Delta continues to provide top notch customer service for our needs. Got discounted fares with medical waivers to change anything we need last minute. Plus we now get the TMA Care program that individually helps those with disabilities get through check points so no more stress around that. Got a car booked then got connected with a manager who is giving us a Shriners discount and lots of free upgrades and perks. Finalized with a DME company today for her rental reclining wheelchair that will be here in time to bring with us there. So, today, felt like things were coming together. The last three days have felt like 30 though so this momma plans to sleep 😴 til noon tomorrow...</p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-60989894354855366072017-09-30T18:44:00.002-07:002017-10-02T18:59:27.794-07:00Nineth Philadelphia Trip<p>Just finishing up our 9th trip to Philly in just over two years. Things are going better than expected. Friday was the start of Dylanns 8 ponseti casts to get her feet back in better position. We do two casts here then home to MN for three weeks/ 4 casts at Mpls Shriners the back out here10/26 for two more and surgery.</p>
<p>Here are some pics before casting on Friday morning. She loves the Ronald McDonald House!</p>
<p><img src="https://lh3.googleusercontent.com/-8vmDpeFkUXc/WdBDBq7lvLI/AAAAAAAACSM/CicuZwV9ZO8zhxGUrHAONQaPyLovZ2ANgCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-AtDaJIj9BnI/WdBDCgjkQoI/AAAAAAAACSQ/LoOS8THkZkstvwmvYQwfM9E3YhOgR1g3QCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-YRk13HZLmhg/WdBDDxMGoJI/AAAAAAAACSU/AJb5l7MiKxUMQgZShVcSVrh7rcFOok-9QCHMYCw/%255BUNSET%255D" alt=""><br></p>
<p>We had our appt early Friday and things were running on time! She was a complete angel 😇 during casts, just laying and watching tv. The dr and I talked about her surgery a bit. We've been debating about flying or driving home and he helped with questions around that. He talked again about how her shins are twisted on both sides. Her ankle bones are on front and back versus the sides. He may decide to untwist these during surgery next month depending how much her feet correct during this casting. We talked about the knee plans and that both knees should fully straighten 6-24 months after the surgery. They may lose a little of the bend ability as the arc of motion stays the same, it just realigns. I didn't realize this but Dylann actually has a good amount of motion in both knees, one just doesn't straighten. So this will help her work towards walking independently without braces and hopefully won't lose too much bend as the trade off. She will need a lot of rehab post cast. I learned the time after the cast from surgery is worse than the time in it. </p>
<p>Here's a few pics from day one.<img src="https://lh3.googleusercontent.com/-eE4n31I4tJY/WdBGETLxvVI/AAAAAAAACSo/a3JSIv8fnRwYMCBcn1djElFkqHNWx1iAwCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/--4oc_UmZCzw/WdBGGXbryRI/AAAAAAAACSs/P6vkn3UgjYoVbkuXPoMCR1n-Vtr3T65PQCHMYCw/%255BUNSET%255D" alt=""></p>
<p><img src="https://lh3.googleusercontent.com/-Ljl8o2VMFcM/WdBGCD2VG0I/AAAAAAAACSk/9dvSsc1c2akjlxkxs8FvJWx7oAv3hP96QCHMYCw/%255BUNSET%255D" alt=""><br></p>
<p>First night sleep was pretty restless, mostly cause Dylann is a belly sleeper and was getting frustrated that she couldn't roll around as much. She slept all night though so way better than expected! </p>
<p>Saturday we went to the Camden Aquarium and to the mall to have some fun. Dylann made friends at the RMH.</p>
<p><img src="https://lh3.googleusercontent.com/-BDYj4_AT_4E/WdBIb4U3TXI/AAAAAAAACS4/kLZ1tJASo3c6EhciIcFWo0p40aU-bXVigCHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-zmaVydhU7Xw/WdBIefHnBfI/AAAAAAAACTA/HZ9skwYH5TEegA01L5MRzLURC6BDsgJLACHMYCw/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-gC_tpFZsfac/WdBIffmUInI/AAAAAAAACTE/tUanf-1_VxYP5oawMlNgJWuS85arcoDYwCHMYCw/%255BUNSET%255D" alt=""><br><img src="https://lh3.googleusercontent.com/-6fTzo70gt-0/WdBIcwGZ_-I/AAAAAAAACS8/5YWCN-FExBMrlT9Nb1V6YIb83A_WWn-RQCHMYCw/%255BUNSET%255D" alt=""></p><p>Sunday we went to a park and ate at WAhlburgers and played with our new friend Owen at the house. Sleeping continued to be rough as nights went on for Dyl. She's mostly complaining about her left knee and medicine doesn't seem to help.</p><p><img src="https://lh3.googleusercontent.com/-24KM0__ZerI/WdLtpLFmKTI/AAAAAAAACU0/qLaJew8uE_AHna0yiWM8PSXovHsfjDeowCHMYCw/%255BUNSET%255D" alt=""><br></p><p>Monday we had our second appointment. It was a long day with a three hour wait until our casting. Dylann had a very sore knee so was pretty tearful during casting this evening. Will see how tonight sleeping goes. Tomorrow we get up early and head back to MN for three weeks then back here for two. She went for two toned tonight!</p><p>This girl is so amazing!</p><p><img src="https://lh3.googleusercontent.com/-HqL90mAJEVg/WdLu2RGrB7I/AAAAAAAACVM/RpvDWTUr1OIoHKbn_dXdHNjU9TCMlr6eACHMYCw/%255BUNSET%255D" alt=""><br></p>
Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-53191520957882762582017-08-22T20:40:00.001-07:002017-08-22T20:40:29.356-07:00Special Needs Mom Thoughts - 70 days until surgery <p>Most days I don't even think about Dylanns AMC anymore. She's come so far and it just becomes part of daily routines. Today for some reason things bothered me. I dropped her off at daycare this morning and on the way in she's walking in her braces while I push her walker and she says, "mom, I don't need my walker anymore, I can walk now. Let's give it to someone who needs help walking."</p><p>I then watched her go into her room and try so hard to chase around her girlfriends in the class. I am so proud of her determination and at the same time I felt so sad. She was always behind them so didn't catch up to the group playing but looked elated to be doing it. It was such a weird mixture of feeling so proud and such heartache at the same time. I hope she always feels included but I know that's not going to be the case. She's so excited to be independent and doesn't understand the road she starts next month having to start all over.</p><p>I'm in several different Facebook support groups for Arthrogryposis; some for moms only, some for any connection to the condition. There was a very heated discussion yesterday about if AMC moms can really understand what it's like to have AMC and ultimately that we really never will. Some adult AMCers went on to say how selfish we are for putting our kids through all these procedures nowadays when they all managed without them. I can't shake that discussion. I mean I trust my doctor 100% but his goal is to get her to walk independently without KAFOs. But would that be Dylanns goal if she could decide this? Are we putting our kids through too much pain when's she's perfect and happy right now? It's so hard to know if you're making the right decisions sometimes. I guess I have never thought of myself as selfish. So those comments struck a chord with me. I felt that dichotomy this morning when she walked off. How do you know you're doing the right thing? This preparation just feels so much worse than last time.</p><p>Most days I don't even think about Dylanns AMC anymore. Today wasn't those days.</p>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-4290804711205754562017-07-06T17:59:00.002-07:002017-07-06T18:09:33.087-07:00A date is set<p>We got the call today. Dylanns next surgery is set up.
</p>
<p>It's weird because I've been waiting and wanting it set up but after the call today I'm not feeling relieved, I'm actually feeling sad and worried again. It's going to be a long Fall/Winter for Miss Dylann.</p>
<p>The plan is this. We go to Philly for two sets of clubfeet casts 9/29 and 10/2. Then we come home and work with MPLS Shriners for a month doing another 4 casts here. Then back to Philly for casts 10/27 and 10/30 with surgery 11/1 so we will be there 1.5 weeks. These will be trips 9 and 10 in the last two years. So this year Halloween at the Ronald McDonald house but we should be back home for her birthday!</p>
<p>Dylanns surgery will be all day. She's having hardware removed from her left femur that remains from her last surgery. She is having a left pelvic osteotomy to help her hip stay in place ongoing by rounding out the socket. She's having 8 plates in her right knee to help her naturally straighten it while she grows over the next year, and she's having two heel tenotomies where they sever her heel cords to help with her clubfeet regression. I'm not totally clear on how long she'll remain then in her Petrie cast but likely 6-8 weeks. She'll look like below.</p><p><img src="https://lh3.googleusercontent.com/-tourdfbguqg/WV7dY5BV0AI/AAAAAAAACNw/cpVK7N3cgIkRelD5X2blz4PhZlDs1GZswCHMYCw/%255BUNSET%255D" alt=""><br></p>
<p>So we will be driving home and need to figure out how to get her around with her hips that wide. I'm hoping to add something to her wheelchair so she can still keep some independence and she can go to her preschool in that if she's up to it after recovering.</p><p>What I've learned about Dylann is she's so resilient; it's the rest of us I'm worried about 😜. Hoping this is the last major deal for her and that her recovery is that much faster then two years ago when we did this whole thing.</p>
Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-26352285147619039232017-04-28T08:27:00.003-07:002017-04-29T05:12:17.148-07:00Philly trip #8<p>Just finished up our appointment at Shriner's yesterday. I can't believe this is our 8th time coming here already. Each time we come feels like we never left.</p>
<p>We got in Thursday evening and grandma came along to keep us company. We got into the Ronald McDonald House which is always so relieving to be close to the hospital and be somewhere that Dylann loves. We also happened to arrive on the grand opening of the new playroom so she was beyond excited.</p>
<p><img src="https://lh3.googleusercontent.com/-MDN3X88NYzM/WQR-64-92AI/AAAAAAAAB5M/WVq7WEwZuckielNyuV3BRmSlW3AFqYshQCHM/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-4gay_ijbwjc/WQR-7hQT9SI/AAAAAAAAB5Q/74UZdNt_uzEVbaSOrbYaG7HHx8ioXPrzwCHM/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-GEy_QT9QPOk/WQR-8pMf45I/AAAAAAAAB5U/uO-WWt_OAyIK2-65Ox6zQTIaQtF8iTQQgCHM/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-tUH7JtzHKzI/WQR-9RJ4upI/AAAAAAAAB5Y/VqI94fFHU3wrMrYc9-GN_Db4MuSo3TZ_QCHM/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-KUOClcoqvVU/WQR-9xOCwaI/AAAAAAAAB5c/FD8T5137kCACa56vVepsYoCuCh0rpSQiQCHM/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-w8yatZJlRu0/WQR--3QJGWI/AAAAAAAAB5g/yN1jqKNgQuoFCfjOTva5ily0fQ9UohlFgCHM/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-R2XksZlWspU/WQR-_uy-srI/AAAAAAAAB5k/VvzcPlYHoVEj0CiW6MbILZMjoboYUG2rQCHM/%255BUNSET%255D" alt=""><br></p>
<p>AND.. they dressed her like a super hero </p>
<p><img src="https://lh3.googleusercontent.com/-yM5k7PreZcU/WQR_Hpw_1dI/AAAAAAAAB5o/ZxOTiR0_0PgbJZypJHwdgwmsm4KrGZJMQCHM/%255BUNSET%255D" alt=""><br></p>
<p>Our appointment was Friday morning and we were actually in and out pretty quickly. She had an X-ray, then met with the MD, then lots of fixes to her braces, then last check with the MD. She did great and didnt fuss once. </p>
<p>Not much new to report. As expected, in 5- 6 months she will have her next and hopefully last major surgery. She needs one hip osteotomy to help her socket have more of a round shape, a plate removed from her left femur from last surgery, a growth plate surgery on her right knee to gain more extension, and both feet need club feet support so will have heel cord releases. She will need 6 weeks of casting before the surgery. So we will be spending a fair bit of time out here this Fall/Winter. I asked about recovery for someone who's already come so far and he said they do bounce back much quicker. He had her do some walking and said she'll be fully walking in no time! ❤️❤️❤️❤️</p>
<p><img src="https://lh3.googleusercontent.com/-rU8v2VrMVZc/WQSBV8roi2I/AAAAAAAAB50/4b5LRMSFOr8kUBu6qwhacVDRXNSOm6VxACHM/%255BUNSET%255D" alt=""><br></p>
<p>Then we came back to the RMH and played in the beautiful 80 and sunny day.</p>
<p><img src="https://lh3.googleusercontent.com/-XvOiHiKiDRo/WQSBg3Z-iLI/AAAAAAAAB54/T92DQfbraaIx90I2zZsYPCbzz_nXSwBVgCHM/%255BUNSET%255D" alt=""><img src="https://lh3.googleusercontent.com/-jpRuECzagmA/WQSBh5nDOqI/AAAAAAAAB58/0E98XTjpXdEDk1iorn6QjlbXTYkhgBcWwCHM/%255BUNSET%255D" alt=""><br></p>
<p>We also met some new friends! I finally met another family from MN who we knew through FB but had never met in person. We also met a few other families with AMC, one of which Dylann really really liked. It was a little 5 year old named Owen from Ohio who had the same walker as her so they played together most of the stay. She kept calling him her best friend :).</p>
<p>We're staying till Sunday actually so this morning we're heading to a hotel close to downtown and the airport and plan to hit up the NFL draft 🏉, enjoy the weather, and go swimming. Overall a nice trip!</p>
Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-13616937110835509992016-10-28T18:16:00.001-07:002016-10-28T18:18:00.318-07:00Philly trip #7<h2><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: 17px;">Just wrapping up the day after seeing our MD. We had the early appointments which was nice so we actually got out of there at 230 today. </span></h2><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Got her new braces at 830, then X-ray, then waited for her appointment until about 11. Played a little tea party while we waited.</span><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Yp_37tQtqqw/WBP193f7kMI/AAAAAAAABe8/aDrKnnORyDM/s640/blogger-image-2040607533.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" src="https://lh3.googleusercontent.com/-Yp_37tQtqqw/WBP193f7kMI/AAAAAAAABe8/aDrKnnORyDM/s640/blogger-image-2040607533.jpg"></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">She got a new "buddy" from the X-ray tech.</span></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-b16Prwmc8RE/WBP19UJs0PI/AAAAAAAABe0/KRCcPiXSovc/s640/blogger-image-491625114.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" src="https://lh3.googleusercontent.com/-b16Prwmc8RE/WBP19UJs0PI/AAAAAAAABe0/KRCcPiXSovc/s640/blogger-image-491625114.jpg"></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">She got some new pink braces! She must have really liked pink in June when we ordered these 😜.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-bCztl_ieJgQ/WBP19nVgNRI/AAAAAAAABe4/70y_iT_7FoQ/s640/blogger-image-1793392576.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" src="https://lh3.googleusercontent.com/-bCztl_ieJgQ/WBP19nVgNRI/AAAAAAAABe4/70y_iT_7FoQ/s640/blogger-image-1793392576.jpg"></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The appointment was hard. Dylanns got more work to do. 😞 Her feet are still regressing but not too fast. He's hoping to keep the next casts until a year from now. Her knees are the same, same plan. In a year she'll have her knee surgery where he will stop the growth plates so it can straighten out, then remove them. Her hip was disappointing. It is in and it is growing and progressing...but, the socket is not shaped like it should be by now to keep it in. He wants to do another surgery in a year to curve the socket then into a 6 week Petrie cast like below.😬. He's going to think more about timing but potentially it could mean an all day surgery of hip, both knees, and femur plate removal or splitting these into two so this cast x2- once for hip and once for knees. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-h8MN6WF49BY/WBP4JoHwHoI/AAAAAAAABfI/iG8inbp2kxs/s640/blogger-image--917372211.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" src="https://lh3.googleusercontent.com/-h8MN6WF49BY/WBP4JoHwHoI/AAAAAAAABfI/iG8inbp2kxs/s640/blogger-image--917372211.jpg"></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I'm at the point I might just move out here. He's talking more stuff he wants to do after "a few years down the line." I was hoping we'd graduate when she was 5 😂. Not so much.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Anyways, just trying to digest it all. Dylanns exhausted and passed out at 739...so I'm going to read a bit.. The new Jodi Picoult book is out !! 😍 </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Think of and pray for this little one.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-TawYjV6YaPY/WBP4Jvm7TAI/AAAAAAAABfM/NnrNeD6Fuqk/s640/blogger-image-574827066.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" src="https://lh3.googleusercontent.com/-TawYjV6YaPY/WBP4Jvm7TAI/AAAAAAAABfM/NnrNeD6Fuqk/s640/blogger-image-574827066.jpg"></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com1tag:blogger.com,1999:blog-3987630921829101889.post-31462791443793988012016-10-05T16:54:00.001-07:002016-10-05T16:54:12.339-07:00October updatesHey all!<div><br></div><div>Not too much to update this month so far. We do go back to Philly in three weeks so I'll update more progress then.</div><div><br></div><div>We've been working hard to get Dylann walking in her walker more then also being able to get up in her tall braces. She starts preschool on 11/15 so we want her to be as independent as possible. Can you believe she's three in a month!?! A preschooler, wow! We get to see her room Friday to prepare.</div><div><br></div><div>I also decided 6 months ago to see if we could get more services and help through the county. I had been avoiding it for a few reasons: 1) I kept being told she wasn't "disabled enough" by other moms, 2) it's a lot of work and energy that I wasn't sure I had in me to end up getting denied, and 3) there's something that feels final about getting a determination that states you are certified disabled that I wasn't sure I wanted to do. Our pediatrician encouraged us to do it in March. He said he was surprised I hadn't thought about it sooner and that he'd like to see us get some help. Lol I must have looked defeated or tires that day :)! Well after 6 months of paperwork and advocating and paperwork and waiting and paperwork, the MN state medical review board did determine she met their guidelines for disability.</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-SbGn0s6LkUM/V_WSo4CTFMI/AAAAAAAABcM/XXHj3vyEZzo/s640/blogger-image--1203879415.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-SbGn0s6LkUM/V_WSo4CTFMI/AAAAAAAABcM/XXHj3vyEZzo/s640/blogger-image--1203879415.jpg"></a></div>So, will see what else we can get to help Miss Dylann keep progressing and keep being awesome!</div><div><br></div><div>I'll post more after Philly! </div><div><br></div>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0tag:blogger.com,1999:blog-3987630921829101889.post-42239036768952296552016-09-10T18:41:00.001-07:002016-09-10T18:41:58.062-07:00End of summer updatesI noticed it had been awhile since I posted so wanted to give an update but not too much is new.<div><br></div><div>Dylann continues to go to twice a week physical therapy and is working very very hard to stand by herself and try to take some steps. She finally got her walker through insurance so we've been taking it to the mall and to daycare so she can work to get around on her own more and more.</div><div><br></div><div>She continues to see Angel which Dylann loves and asks to go to each week. "Mom can we see Angel to rub my back pease." We spent a few months seeing a chiropractor as well to work on her back unevenness.</div><div><br></div><div>We've been working with the school district to get her on an IEP and she will start preschool mid November! It's twice a week for three hours in a regular classroom setting.</div><div><br></div><div>We go back to Philly Thursday 10/27 for check up, new braces, and X-rays. Dyl and I will be braving it alone but it'll be a short trip with a return flight Saturday.</div><div><br></div><div>We had our third annual Dylann's Dash event a few weeks ago and was the most successful yet! We raised about $7500 above the cost of the event and gave out two scholarships!! The weather almost caused some issues but right when folks started coming the sun came out and stayed the whole time. Magic Arms and AMCSI will be recipients of this money and next year I plan to hit 10,000 and add Shriners to our list!</div><div><br></div><div>Happy end of summer to everyone!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-XJdZvoNivGc/V9S2ZV-LmqI/AAAAAAAABV4/om45KgBo4zQ/s640/blogger-image--2031858464.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-XJdZvoNivGc/V9S2ZV-LmqI/AAAAAAAABV4/om45KgBo4zQ/s640/blogger-image--2031858464.jpg"></a></div><br></div><div><br></div>Jennie Phttp://www.blogger.com/profile/02696761887548807785noreply@blogger.com0