tag:blogger.com,1999:blog-34042775915740606202024-03-13T06:33:03.052-07:00Isaac's Big AdventureIsaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.comBlogger179125tag:blogger.com,1999:blog-3404277591574060620.post-81749476620238613472014-04-08T03:03:00.001-07:002014-04-08T03:03:58.629-07:00Almost a year? I thought I would share a little update on Isaac since its been nearly a year since my last post.<div>
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Isaac is 5 years old!!!! He goes to pre-K four days a week for half a day. He loves his teacher this year and has been lucky enough to have an aide nearly all to himself this year. His speech is intelligible by most these days - its pretty amazing to those who haven't seen him in awhile. He still loves books and music. He gets occupational therapy, physical therapy, speech therapy and music therapy (by far his favorite). <div>
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He got a trampoline for his birthday last year and have been so excited to use it again since we've been trapped in the house with all this crazy weather this winter!!! Yay for spring finally!!!! He's on .4mg of genotropin daily. We are set to have another sleep study in May and a revision on his VEPTR in his back in the next couple of months. </div>
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He's into repetitive questions right now and pretty particular about his schedule. He has a rough time with transitions but does well when he knows how things are going to go in advance. We have had a few instances this year of hitting at school but for the most part he just resorts to crying when he doesn't get his way. But overall he's doing well. Those are just our areas of concern for now. </div>
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He still has limited access to food and is only allowed to eat what we give him - so foodwise we haven't had too much trouble so far. His weight is up this winter but once we can get more exercise that should be a lot better too. The winter has been hard on all of us. :) </div>
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We have a meeting next month to talk about Kindergarten - which has us a little freaked out - but excited. Its hard to believe how fast it all goes. </div>
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Here are a few recent pictures:</div>
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Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com1tag:blogger.com,1999:blog-3404277591574060620.post-67726153975655463962013-06-23T13:11:00.001-07:002013-06-23T13:11:34.067-07:00Wow, so its been awhile. Isaac is doing pretty well. The last several months have been eventful. His VEPTR revision went great - much better than expected. He was off Pre-K for a while just tired more and couldn't tolerate as much for about a month after (was worn completely out by preschool 3 hours a day/4 days a week, stuff like that) <br />
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We were very glad once school was out for the summer for sure!!! He'd started to throw tantrums when he was tired and cried a lot more. Once he got his bearings he's been back to his old wild self now that he's had some time to rest. We are keeping him in pre-k another year next year - because I just don't think he can swing a full day of school just yet. <br />
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His new favorite thing is pretending he's Handy Manny and trying to fix things with his tools, so there are play tools everywhere, all over our house and yard, stuffed in drawers and hidden in corners. He asks who's calling and wants to know what they want fixed, then says will they like that mommy - once he's fixed it. Super cute. <br />
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All things food seem to be going ok for the moment - he's not really pushing us for it too much. He's been busy busy and playing outside ALL THE TIME - so I think we are doing alright for now. We are in sugar free popsicle bliss I think, yay summer. <br />
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We spent a week in Hilton Head in early June and the kids loved it, I'll have to post some pictures. Isaac will be 5 this summer, Jack will turn 2 in October and Lucy is going to be 4 in January - so its been a zoo. But I'm glad to report that things are going well. I guess I haven't really posted too much lately because PWS hasn't been to big of a part of things lately. So that is the best thing I could post anyways. :) Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com0tag:blogger.com,1999:blog-3404277591574060620.post-75062994822993793652013-01-28T07:20:00.005-08:002013-01-28T07:20:48.883-08:00Surgery scheduled - eek. We are set for a complete revision of his VEPTR on February 21st. So please keep us in your thoughts and prayers - it is his 1st revision - and it will be a pretty long involved surgery. (oh and I'm a worrier, so setting the date it like a stopwatch for my panic)<br />
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Here's the little guy enjoying his mild winter. </div>
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Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com1tag:blogger.com,1999:blog-3404277591574060620.post-62220148283427217132012-11-19T06:17:00.000-08:002012-11-19T06:17:08.819-08:00IEP & parent teacher conference So we had our 3rd IEP for Isaac - they are adding PT and OT to the ST he's receiving at school. This will be in addition to the therapies he receives privately (PT, ST, and OT) each week. We are excited. Its nice to hear them talk about his progress. <br />
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When we bombarded them with our questions about food, they all said he's doing fine around it (and they eat family style), not trying to take other kids and so on. They also said that there has been no aggression this year, no pinching, no biting. They believe and I agree, its because he can communicate so much better this year. <br />
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He also started Music therapy about a month ago, and I'm pretty sure he'd leave us for his therapist if he could. Any lady who will play the piano for this boy has his heart forever. <br />
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We are prepping for these food filled holidays coming up - trying to work on our game plan for all of it. Keeping Isaac from gaining a bunch of weight before his surgery in January has us a little on edge, but we are always a little on edge I guess. :) <br />
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Now onto the important stuff, what should Santa bring a cute little 4 year old boy for Christmas . . . Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com0tag:blogger.com,1999:blog-3404277591574060620.post-2623808188296490612012-11-08T16:10:00.005-08:002012-11-08T16:10:55.623-08:00Isaac the ring bearer<div class="separator" style="clear: both; text-align: center;">
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Here's Isaac and Lucy at my brother's wedding a couple of weekends ago. I love this picture and had to show him off!!! <br />
Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com1tag:blogger.com,1999:blog-3404277591574060620.post-9347873125000383772012-10-11T14:31:00.000-07:002012-10-11T14:33:45.001-07:00Been awhile - eye sugery went wellQuick update :) - Isaac had eye surgery September 18th and it went well - his eyes are much straighter now. <br />
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Oh and guess who is in the 75th for weight. Yeah, Isaac is looking good. We had his 4 year shots and he was 42 lbs and around 41 inches. <br />
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Just thought I'd post a few pictures of what we have been up to. <br />
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Isaac had to read Jack's books to him that he got for his 1st birthday, as they opened them :)</div>
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Isaac's not afraid of the tigers for sure, but poor Jack wouldn't take his eyes off the tiger</div>
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Enjoying the big slide</div>
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This is what you get when you ask for silly faces . . . </div>
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We see the orthopedic surgeon next week to talk about getting a larger VEPTR device and taking out the old one. Just wanted to give a quick update. He's enjoying preschool a lot this year - and really just growing into a fun little nut like the rest of our goofy brood. :)Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com0tag:blogger.com,1999:blog-3404277591574060620.post-89604753052391340642012-08-02T09:39:00.001-07:002012-08-02T09:39:03.144-07:00Happy 4th Birthday Isaac!<div class="separator" style="clear: both; text-align: center;">
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Isaac and Jack trying out the new wagon</div>
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Isaac showing off his pirate hat</div>
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The wiley band of misfit pirates at the party</div>
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Isaac cheesing with Jack</div>
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Getting close to a rhino - we went to the Wilds the weekend before his birthday and he really loved it, despite the expression in this picture. :)<br />
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Happy 4th Birthday Isaac! The pirate party was so much fun, with all kinds of family and friends showing up. He was in heaven. I know everyone says it, but I really can't believe its been four years since you showed up, because I really don't remember life without you! <br />
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Oh and he even got to have his birthday card read on The Sunny Side Up Show on Sprout by Chica. He thought that was pretty awesome too. Barney said "Happy Birthday" - I couldn't top that next year if I tried. :) Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com3tag:blogger.com,1999:blog-3404277591574060620.post-85457504995918347792012-08-01T14:28:00.002-07:002012-08-01T14:28:20.304-07:00Anyone else use the Genotropin Pen 5??We had the pen back when he was 2, but complained about it leaking (as in there wouldn't be enough in there for the last dose) and were switched back to mini quicks. Apparently at that time, many others had the same problem. So ever since we've been on the mini quick indivicual shots. <br />
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We switched to the pen almost a month ago, and maybe we are just paranoid, but we worry he's not getting all of the shot. With the mini quick shots, it was simple. There was no smell, no drop on the end of the needle when you pull it out. But with the pen, no matter if you hold it in his leg for 10 seconds or 15 seconds or a year, it still comes out with a drop on the end, and it still smells. I'm just curious as to other's experiences - if its something to be concerned about. The dosage he's on right now doesn't come in the mini quicks, so we had to go to this for the increase. So if anyone has any guidance I'd appreciate it. <br />
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Also, we belted the refrigerator. Isaac has been getting in the fridge but not really for the food. Mostly just to play and nose around. So we had to keep him out - and ended up cutting a canvas belt and strapping the two fridge doors together. The belt is attached to one of the doors by a plastic strap so it won't fall off. But like everything else with this syndrome, we always worry its the worst, the beginning of the monster. We have to be prepared I guess. <br />
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Enough rambling, for once all 3 of my children were napping so I decided to post - and of course 2 of the 3 are now up. :) I will post pictures of Isaac's 4th birthday soon!!!Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com2tag:blogger.com,1999:blog-3404277591574060620.post-61270110033979770212012-06-26T19:35:00.001-07:002012-06-26T19:35:26.204-07:00The Busy Summer BeginsSo we went to the Outer Banks for Vacation the first week of June and had a great time - then back home again to start extended school year and then off to Columbus this past week to see Orthopedics and go to the PWS Clinic. I am in a blur it feels. His VEPTR on the right side is holding on by a "whisper" but we are holding out until October to switch the entire thing out - its still keeping the boy straight and the infection seems to be gone (yippee) so we are happy. We just hope we can make it that long without any excitement. <br />
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Our PWS clinic appointment went well - they increased us to .7 dose of Hgh over our .6 - so he's growing. Weight and height were going with his growth curve so they were pleased. Diet is to remain the same. Still unsure of how long we are staying with the clinic there - its just that the VEPTR has kind of locked us in there and we go to so many appointments with that. Just don't know. Eric wants to see about going somewhere in Pittsburgh maybe, and sticking with the Ortho in Columbus. We are so indecisive - its amazing we ever married. :) <br />
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Summer is going great - he's really chatting us up - we love it! He's turning 4 in July and he's having a pirate party! Which we thought he'd be excited about but then he told us, "NO, NO pirate party, handy manny party." So you want a handy party, "No, Barney party" You want a Barney party "No, scooby doo" And on it goes, but he's really getting excited about his birthday, just not the pirates. :) OH and he's all about the swimming these days. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMIY6A0RfZsN68aDbVzUYyNt1i7CE7ykCS8u1hvqD1CzYBv3sSHbxMTzHlcykKQSot9SaRC0R_c4cxHQtS_TFLLe27RfVbtYwaEyT84n0vRlAnUYUDPfDXmXOOmqTYPBavSITSpyrx0-w/s1600/698.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" rca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMIY6A0RfZsN68aDbVzUYyNt1i7CE7ykCS8u1hvqD1CzYBv3sSHbxMTzHlcykKQSot9SaRC0R_c4cxHQtS_TFLLe27RfVbtYwaEyT84n0vRlAnUYUDPfDXmXOOmqTYPBavSITSpyrx0-w/s320/698.JPG" width="320" /></a></div>Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com0tag:blogger.com,1999:blog-3404277591574060620.post-14145717603232786992012-05-23T14:35:00.003-07:002012-05-23T14:45:05.100-07:00Katie Beckett<a href="http://www.nytimes.com/2012/05/23/us/katie-beckett-who-inspired-health-reform-dies-at-34.html?_r=2">http://www.nytimes.com/2012/05/23/us/katie-beckett-who-inspired-health-reform-dies-at-34.html?_r=2</a><br />
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I was told when he was first born I needed to apply for a "Katie Beckett" waiver - its amazing what has come about in our country due to this wonderful woman and her family fighting for their daughter to have a better life. <br />
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Isaac has been on WV's Waiver program for almost a year and it is amazing. Our waiver provides him a special needs medical card and access and funding for therapies, respite, nursing, all kinds of things. Its amazing what is available to my son through this program - Its amazing how much better you can sleep at night not worrying about whether your insurance will cover everything - and knowing that there are so many wonderful resources out there. I'm thankful to Katie Beckett and all that she accomplished for so many out there. RIP.Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com0tag:blogger.com,1999:blog-3404277591574060620.post-39589745437050105522012-05-09T06:51:00.000-07:002012-05-09T06:56:46.444-07:00Oh and some more of our little Matlock<div class="separator" style="clear: both; text-align: center;">
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They are so stinking adorable - yeah I'm super partial, but I can't help it.Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com1tag:blogger.com,1999:blog-3404277591574060620.post-80676803619002677932012-04-27T10:03:00.002-07:002012-04-27T10:03:23.023-07:00Any insurance appeal tips out there?Isaac was denied speech therapy - we've had it for half a year and now they are saying he doesn't fit the guidelines for medically necessary? Even though he fits all of the required list word for word?
Even after his pediatrician did a peer to peer review twice? For real? You don't think this little boy needs speech therapy? Whatever. I'm just tired and annoyed.
So any tips on insurance appeals??Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com6tag:blogger.com,1999:blog-3404277591574060620.post-64876195909195591092012-04-21T19:54:00.000-07:002012-04-21T19:54:28.167-07:00Doing much betterSo we had an appointment Friday 13th to get the bandages removed again - dr. said it looked really good. Hoping that 6 weeks more of antibiotics gets rid of the infection - then we can still be on board with a total revision of the device in 6 more months (switching out the entire thing on both sides). If not - other crappier alternatives exist but I am staying positive that this is just killing it. :)
Isaac is feeling sooo much better singing and laughing and back to his happy self - he still has horrible balance, made obvious by the enormous pump knot on his head he got his first day back to preschool - but hoping that all starts to improve too as he gets more used to the adjustment.
We also had an eye appointment, and surgery was discussed. Isaac's eyes are crossing even with his glasses on - so yeah the glasses aren't going to correct it anymore. Accommodative esotropia is the actual term for what isaac has. Anyways, just wanted to update.
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0KfrPEjUA8Cd2aH2HGxP0vpz1CgaI6UCXQVDiVSEYx13a_y6vpSo_WjZOAue2tUQq1PkRrTKsHDsfyRcG2IaoUevo9POWkEM6Z-Egz_ckXpNYkK20wSmvNKWQRr66wsD7rWtxCqRHr_g/s1600/009.JPG" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0KfrPEjUA8Cd2aH2HGxP0vpz1CgaI6UCXQVDiVSEYx13a_y6vpSo_WjZOAue2tUQq1PkRrTKsHDsfyRcG2IaoUevo9POWkEM6Z-Egz_ckXpNYkK20wSmvNKWQRr66wsD7rWtxCqRHr_g/s320/009.JPG" /></a></div>Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com1tag:blogger.com,1999:blog-3404277591574060620.post-34301559992703309172012-04-11T05:57:00.002-07:002012-04-11T06:06:30.869-07:00Yikes, rough couple of weeksSo March 29th we went to columbus to get his surgical dressing taken off - he was kind of grouchy but I didn't think anything of it. By the time we got home he had a fever of 103 and I couldn't get it down. No other symptoms really. We took him to the pediatrician's office the next day. They checked for strep and wondered if it might be a virus. Fever stuck with us all weekend and the scar on the left side of his back became swollen and red. By Monday we were in the ER here, after torturing him for a few hours we were sent back to Columbus where they opened his back up again Monday night. <br />They cleaned out the wound, but the device was kept in. We stayed in the hospital until Wednesday on heavy antibiotics and waiting to see what the tests showed the infection was. Thursday we found out it was staph, and switched antibiotics for the third time. Friday we found out it wasn't RSV. So he'll be on antibiotics for at least 6 weeks - he still acts like he's in pain - so he's still on Tylenol with codeine. Its just been wild - but we really hope the infection didn't make it to the device, because having to get that removed sounds just awful for the poor boy. <br />We go back Friday again to have this dressing taken off and make sure everything is going ok. So keep Isaac in your prayers. What an awful way for a kid to spend his spring break from pre-k. :(Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com4tag:blogger.com,1999:blog-3404277591574060620.post-75755561250779280142012-03-20T08:39:00.003-07:002012-03-20T08:56:49.888-07:00Surgery went wellSo this time he only had to have a lengthening done, next time we'll have to have to change out the top portion of the device changed out - but we are thankful this one is over for now. He did great and was moving around soon after. <br /><br />He had a room (suite actually) in the new portion of Nationwide Children's Hospital this time. It was very nice. We tried out the new playroom too. Overall we could ask for a better outcome. :) <br /><br />Oh and anyone else notice how hard it is to not give comfort with food after a big procedure like this? It feels like I'm going against nature here to not feed him treats to make him feel better. <br /><br />Anyways, he's doing great climbing the walls stuck here with mommy and the two others.Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com2tag:blogger.com,1999:blog-3404277591574060620.post-65473209955871311332012-03-12T08:10:00.002-07:002012-03-12T08:17:47.384-07:00More cute<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglp3-eLXYtnSrzgNswSYuhDCVORzUIGElwfAHvcNOk6C3ZpsYQcLbliy6nf9dVH-KsUnXZYKRzR1zkRJAUv7QtAe6QINk-bEPkaDFCcs1NA4Wn4syMgl_81h4K8nOGZIEzg0OH4Ar5PHQ/s1600/382.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglp3-eLXYtnSrzgNswSYuhDCVORzUIGElwfAHvcNOk6C3ZpsYQcLbliy6nf9dVH-KsUnXZYKRzR1zkRJAUv7QtAe6QINk-bEPkaDFCcs1NA4Wn4syMgl_81h4K8nOGZIEzg0OH4Ar5PHQ/s320/382.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5719029676481758674" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDWSwS6dSoE7oMsIF6mub2ld_2q7LMQHOzU-A8U8Gm0T8kCbyIqQJ_Nw3lruWQ9b-2t9N35yV1R_Qv_wX1geMI0pwe6m25Laf022s6FAl0ZketZdvhF2k28QXc-Co86quMmeklRzFOF4s/s1600/398.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDWSwS6dSoE7oMsIF6mub2ld_2q7LMQHOzU-A8U8Gm0T8kCbyIqQJ_Nw3lruWQ9b-2t9N35yV1R_Qv_wX1geMI0pwe6m25Laf022s6FAl0ZketZdvhF2k28QXc-Co86quMmeklRzFOF4s/s320/398.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5719029665872872786" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfylcdhIoC717CO0VYfqEuQQLtRxkWX4uqu-EvY3bYxAzAxNOg-WLR7eX0xG6Y-tNwbF_P681EkrFj0Fvr9qE8fd_st9N_PJEHjQ5RApFtbvCVBAPJqVGEvOvcLghT8WZZjEZxn2reb5I/s1600/299.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfylcdhIoC717CO0VYfqEuQQLtRxkWX4uqu-EvY3bYxAzAxNOg-WLR7eX0xG6Y-tNwbF_P681EkrFj0Fvr9qE8fd_st9N_PJEHjQ5RApFtbvCVBAPJqVGEvOvcLghT8WZZjEZxn2reb5I/s320/299.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5719029657271286610" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiqL1gnIA6BW5YRl_Es1Kjo_s4adX1vhSv_Yl8ITRIIOLrptWVMhFU4c49A_3E2bY3gSEgEt7JP2PlQb8KdHaMxpgJNiBbcRvs2HMHY_u0zXlUffjApBSBWorudF_yfGxgKGj6GJQronk/s1600/120.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiqL1gnIA6BW5YRl_Es1Kjo_s4adX1vhSv_Yl8ITRIIOLrptWVMhFU4c49A_3E2bY3gSEgEt7JP2PlQb8KdHaMxpgJNiBbcRvs2HMHY_u0zXlUffjApBSBWorudF_yfGxgKGj6GJQronk/s320/120.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5719029649841640450" /></a><br /><br /><br />I had to throw in some of 5 month old Jack (the giant) and Lucy at her 2nd Birthday. And yes that is Isaac reading to Scooby Doo. He also likes to read to a group of Mickey Mouse stuffed animals and a Barney. :)Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com2tag:blogger.com,1999:blog-3404277591574060620.post-89377171109182856862012-03-12T08:04:00.002-07:002012-03-12T08:10:38.866-07:00Some new cute kid pictures :)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAw-ukOrLFUxBNYyT4IybIqTeJxLh8COT-3E4JAha7XOcDHF3e7mqAErB7SscRwZiqI5zV3GEEP3bGa20JAVBy-fuEZDtYjaVyZaIxDvmjnC93e04FWqJ8zKNBAgH9bn0wsXSrfZDXYWg/s1600/030.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAw-ukOrLFUxBNYyT4IybIqTeJxLh8COT-3E4JAha7XOcDHF3e7mqAErB7SscRwZiqI5zV3GEEP3bGa20JAVBy-fuEZDtYjaVyZaIxDvmjnC93e04FWqJ8zKNBAgH9bn0wsXSrfZDXYWg/s320/030.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5719028217927574738" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnbKYEEEKWnYZ0V_oRfICMwJqKUw-WuFCBofaeofd0vMTNJDjfifXWu5SaQ1ytzdmEC2Sv0a_zind3GDsEPP3IWSBdUbQIUHnFOr9_UuW4G5sLpMHon-PcybpMOUxxcdPZuQMACXMEO1w/s1600/226.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnbKYEEEKWnYZ0V_oRfICMwJqKUw-WuFCBofaeofd0vMTNJDjfifXWu5SaQ1ytzdmEC2Sv0a_zind3GDsEPP3IWSBdUbQIUHnFOr9_UuW4G5sLpMHon-PcybpMOUxxcdPZuQMACXMEO1w/s320/226.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5719028211737948802" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2XXbPcn-tLctHX5sawBM-agp2CczRYxIOgpcUzoLwt8fLadM7VqC7-28pHtKO28N1Zarngf7mjk_vS69FCoV7gGeSzFKT13kBwjAo49h41sDawsotIrazU_yIfvctxdKT7lxL-ktaWx4/s1600/203.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2XXbPcn-tLctHX5sawBM-agp2CczRYxIOgpcUzoLwt8fLadM7VqC7-28pHtKO28N1Zarngf7mjk_vS69FCoV7gGeSzFKT13kBwjAo49h41sDawsotIrazU_yIfvctxdKT7lxL-ktaWx4/s320/203.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5719028203174679794" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjya70cTWPeLas4dLgCKDjfkOBwRKaXt_-wSrjmwTeylQIt88Ke0eosHccSCC0cPojYMZOyYZhqEDqalwx4_wEjywQY_OIIrvR_oAjUYB-Zx1bdRQsnaRTjA6GPtzV6Wz3y7y5VbCWpmao/s1600/395.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjya70cTWPeLas4dLgCKDjfkOBwRKaXt_-wSrjmwTeylQIt88Ke0eosHccSCC0cPojYMZOyYZhqEDqalwx4_wEjywQY_OIIrvR_oAjUYB-Zx1bdRQsnaRTjA6GPtzV6Wz3y7y5VbCWpmao/s320/395.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5719028195094675010" /></a>Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com0tag:blogger.com,1999:blog-3404277591574060620.post-50442726489539106612012-03-08T05:54:00.002-08:002012-03-08T06:04:18.427-08:00StressedSurgery is next week and I'd be pretending if I were actually not freaking out about it this time around. I guess he is probably going to have the top part of the device switched during this lengthening and it could go from a 2 hour procedure to much longer - the surgeon won't know until the time of surgery and even then we are out in the waiting room left to wait until its all done with. Oh wait, did I mention that I'm horrible at waiting. Yeah patience is not my forte. <br /><br />Isaac is doing great right now too and I just hope that the surgery doesn't set him back any. Yeah I know it will be ok. I guess I like to worry to keep myself busy. :) <br /><br />We also have his PWS Clinic appointment on Friday and I'm actually excited for it so I can show him off. He's doing well, his weight is good and he's talking much more. I might get him to sing his ABC's or Happy Birthday or his new one, Rain Rain Go Away. :)Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com1tag:blogger.com,1999:blog-3404277591574060620.post-73222227843500449462012-02-06T05:47:00.000-08:002012-02-06T06:07:06.287-08:00VEPTR lengthening scheduled/FOOD stuffIsaac had his annual sleep study done Friday night after his ortho appointment in Columbus. We found out his next VEPTR lengthening will be March 15th - and it may or may not involve a replacement of the top device - he'll only find out once he's in there. His curve has increased around 10 degrees higher than it was after the lengthening last year. The orthopedic surgeon was more positive about VEPTR this time - he still crossed his fingers once while talking - but reiterated that its better than growth rods for Isaac. <br /><br />We should have another endocrinology visit soon - and should find out the sleep study results. His weight is staying pretty steady around 39 lbs. His VEPTR device is kind of pulling against him height wise right now so we might not see any increase there until he's lengthened. :) <br /><br />Things are going pretty well - he hasn't had any change in food related behavior in awhile. We have some basics established (no food in reach or in sight, we eat at the table, we limit his calories). He hasn't really woke up and said or signed eat like he did last year. He'll wake up and usually play for awhile and then I'll offer him his breakfast. He usually doesn't want or ask for food unless he sees it. If you bring out some food he'll come over and ask for some, but if we don't have anything out, he's not really asking. So that's been nice. Because we just try not to eat anything when we aren't at the table unless its ok for him to have some. I guess we always just think we are in the calm before the storm, waiting for all that to start. At least we feel prepared for it if that makes sense. Well enough rambling, off to play with the two other wild ones while Isaac is at preschool!Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com0tag:blogger.com,1999:blog-3404277591574060620.post-49071398186235288192011-12-19T21:10:00.000-08:002011-12-19T21:19:48.401-08:00PWS Clinic Appt<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtWswmcGOL8Y9l1uY9YtoH1zmqwbgpRUubmcc2_ICcybbzVhezVK9qzpjbm9SCNcarsrRlbAufKNM2t_f7SLWvlGCjjN2VmWztu36Ad1gkVCzwAVc09yFNVxd3WzELNHHkVoM6QLSd6w8/s1600/threestooges.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtWswmcGOL8Y9l1uY9YtoH1zmqwbgpRUubmcc2_ICcybbzVhezVK9qzpjbm9SCNcarsrRlbAufKNM2t_f7SLWvlGCjjN2VmWztu36Ad1gkVCzwAVc09yFNVxd3WzELNHHkVoM6QLSd6w8/s320/threestooges.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5688075266458784434" /></a><br />Isaac's weight has stayed about the same since spring - so that is wonderful. It is very hard work - and I stress over his diet constantly, so its good to hear from the doctors that even they think things are going well. He has grown 3/4 of an inch since June. I was really happy and pleased with the appointment. We met with a psychologist during the appointment to talk about certain behaviors and how to address them. <br /><br />Overall it was a great trip - we stayed an extra night and went to see the Christmas lights at the zoo, which the kids loved. We are really looking forward to Christmas this week! Isaac wants a pirate ship and Lucy wants anything princess. Seeing Christmas through the eyes of a kid is absolutely the best! I love how excited they get at the littlest things - we all need to live like that. Just be more excited about the little things.Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com1tag:blogger.com,1999:blog-3404277591574060620.post-84616494335517793492011-11-19T12:02:00.000-08:002011-11-19T12:10:48.900-08:00Speech is really coming right along! Scoliosis UpdateI wanted to share this moment from a few weeks ago because it was so cute: <br />Isaac got a Batman sticker at therapy and on the drive home Lucy kept saying she that she was Batman. Isaac listens to her for most of the ride and then says, "No Ki Ki (what he calls his sissy), I Batman" It was so stinking cute. <br /><br />He now has so many words and is really coming along with intelligible few word sentences. He still gets insanely excited everytime you can understand just what he is saying. I think that between preschool, increased therapy, and Lucy's nonstop talking - he's coming along in leaps and bounds! <br /><br />We had an orthopedics appointment early this month and his curve had progressed 2 degrees in a couple of months - which isn't so bad - but we can expect our next lengthening in Spring of 2012. The goal is to stay closer to 6 months than a year between lengthenings - apparently better for the spine. Not so great when you think that a spine only tolerates a finite number of lengthenings (we've heard around 6) before it doesn't help anymore. Eek. So yeah we have the potential to outgrow the usefulness of the VEPTR earlier than expected but we knew this thing was a work in progress when we got it. Its just hard in dealing with the unknown - but I guess that speaks to more than just the VEPTR :) <br /><br />Jack and Lucy are doing great. Its a wild bunch but everyone seems to have adjusted to the new one pretty well so far. Isaac does try to carry him anytime we look away but we watch for that. :) <br /><br />Bring on the holidays!Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com1tag:blogger.com,1999:blog-3404277591574060620.post-65697961438091949722011-10-12T07:09:00.000-07:002011-10-12T07:14:54.845-07:00Baby Jack is here!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3BOcYMJFMOY4K2mLFMkoD3lNZj_wEENn1-_VwnrL4jgjEX72QsjBzHHmQdQlkFU-QhNX2ZpDKEyv_j8JupRXiyUNDorZuhucMtkrg-oqC9mGEs-tbe6gmIMRN268lMY9YxjaOuzG8h8c/s1600/173.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3BOcYMJFMOY4K2mLFMkoD3lNZj_wEENn1-_VwnrL4jgjEX72QsjBzHHmQdQlkFU-QhNX2ZpDKEyv_j8JupRXiyUNDorZuhucMtkrg-oqC9mGEs-tbe6gmIMRN268lMY9YxjaOuzG8h8c/s320/173.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5662608542760597090" /></a><br /><br />Jack Fisher Cantrell was born October 4th, weighing 7lbs 15 oz and 20 1/4 inches long. Isaac and Lucy like him a lot, maybe a little too much at times. Things are wild but going well.Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com4tag:blogger.com,1999:blog-3404277591574060620.post-37098087154947402442011-09-29T19:19:00.000-07:002011-09-29T19:22:37.911-07:00Some cute pictures :)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo8ccBPCARFOXH650WJKFyKv65oQ9iFRX6hj6uzbVL801I79_HlkzFLgb57riLwOnw5ECehF_KuW2QfOVqSqJan6-rLB9ao8lyMKv4tbLKorSZcUEEQTIcMefMWsyO_S3QBCwQdI0rxPs/s1600/Civil+War+Lucy.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 223px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo8ccBPCARFOXH650WJKFyKv65oQ9iFRX6hj6uzbVL801I79_HlkzFLgb57riLwOnw5ECehF_KuW2QfOVqSqJan6-rLB9ao8lyMKv4tbLKorSZcUEEQTIcMefMWsyO_S3QBCwQdI0rxPs/s320/Civil+War+Lucy.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5657972035708193458" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9ZWpu-IhplZiwFrvGooMxH5hr1RpNinCmrDFi3touyITgnWXXRNy5l1yGDBA8c73Pg2eIhMLW_QsGYAFJZHRC_CrAXEL6bNqR3F9ARKZGs1gWAvw7HkY7ISh3Etc-kAK0cjqlkJVoK0k/s1600/Civil+War+Isaac.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 226px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9ZWpu-IhplZiwFrvGooMxH5hr1RpNinCmrDFi3touyITgnWXXRNy5l1yGDBA8c73Pg2eIhMLW_QsGYAFJZHRC_CrAXEL6bNqR3F9ARKZGs1gWAvw7HkY7ISh3Etc-kAK0cjqlkJVoK0k/s320/Civil+War+Isaac.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5657972018500884754" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWkO2WoAgOC-DsKn87n3agnJtB0Zr_bjZDHluz8nJPdRwSSmloExx_dnPCnU-Zmmbq7sr8652Bnuq7SA7QJhLLd8GBTF62xNDaYatyEVZ_e6pCIckk3zYyMoBhbMiI3E9jzmhXFpwvV0Y/s1600/Civil+War+Kids2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 227px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWkO2WoAgOC-DsKn87n3agnJtB0Zr_bjZDHluz8nJPdRwSSmloExx_dnPCnU-Zmmbq7sr8652Bnuq7SA7QJhLLd8GBTF62xNDaYatyEVZ_e6pCIckk3zYyMoBhbMiI3E9jzmhXFpwvV0Y/s320/Civil+War+Kids2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5657972013208875826" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibO5IV4vixtizq2kYAS-OKdf5BQJCOilEb2qtwo5UsUnCXbhVF9sr0rFPfMzeJf9vsvHYq6X0PLvsG9kBhsGPrjxj2lmbjKdVVBofUZGmNZX7piTH1b2D1ZqUtV3gWrUd0OtVxHZQbar8/s1600/Civil+War+Kids1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 227px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibO5IV4vixtizq2kYAS-OKdf5BQJCOilEb2qtwo5UsUnCXbhVF9sr0rFPfMzeJf9vsvHYq6X0PLvsG9kBhsGPrjxj2lmbjKdVVBofUZGmNZX7piTH1b2D1ZqUtV3gWrUd0OtVxHZQbar8/s320/Civil+War+Kids1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5657972009325610610" /></a><br />I can't resist the cheesy dress up pictures when at the beach. :)Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com1tag:blogger.com,1999:blog-3404277591574060620.post-71147461564133478352011-09-23T06:35:00.000-07:002011-09-23T06:43:18.278-07:00Not sure when I'll get to post againIsaac's 3 year pedi visit was yesterday - we are a couple months off since last years VEPTR surgery - but I'm so happy to report that his weight has stayed the same for months! He's still 38 lbs. and 38 inches tall (which i think he's a little taller but he's hard to measure these days). <br /><br />He's started new private speech and OT which seems to be going well. We still haven't made it in for our PT evaluation - the place we are going is super busy and I don't think he's really a high priority PT case. He also is getting speech twice a week at preschool, which is exciting. He is really getting chatty around our house and starting to get his point across. <br /><br />We don't have long before baby number 3 is going to show up and lord only knows when I'll be able to post after that - but hopefully things keep going well & we get into a routine with all the new recent changes.Isaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.com3