tag:blogger.com,1999:blog-14222219260740856792024-03-05T00:27:22.859-06:00Bueltel Family MiraclesDetailing the lives of the Bueltel Boys, Braydon and Ethan.Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.comBlogger52125tag:blogger.com,1999:blog-1422221926074085679.post-24730904278683726662015-07-07T18:58:00.001-05:002015-07-07T18:58:07.170-05:00On the Other Side (Again)I know it's been awhile and I didn't post an update during Lauren's surgery, but everything went as smoothly as it could. Surgery took a little bit longer than it did for the boys, but I'm glad they took their time with my baby. She ended up with a blood transfusion, but so did her brothers.<br />
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The first night went surprisingly well in PICU. The next day some coaches from the Virginia baseball team stopped by for a visit. The pitching coach promised to get the boys a ball if we ended up attending a game. Coach Karl came through on his promise as my dad was able to talk to him before the 1st championship game. The Cavaliers lost that game but came back and won the 2nd two games to win the championship.<br />
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We got moved to the 5th floor that day as well. Things started to decline, the swelling got worse and she stopped eating. She was on morphine every 2-3 hours and we had a hard time keeping her comfortable. This went on for a couple of days. We were able to get her off the morphine on day 3 but she still wasn't eating. So we needed to stay another night. Later that day we finally got her to eat and the swelling started to go down. I walked around with her and was finally able to nurse her as well. We were able to go home on day 5.<br />
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Her brothers were very excited to have her home. Things have been going well at home as well. During my time off, we were able to go to the zoo a couple of times and went swimming with family as well. She had her 2 week post op checkup and everything is on target.<br />
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We received back the results from Lauren's genetic testing that they did here locally. And it turns out that Lauren has a duplication of the 12q15 or MDM2 gene. While it's never been linked to craniosynostosis, we might have found the missing link. The geneticist wasn't sure if she could get approval to run the same test on the rest of us, but since we were part of a genetic study, she thought they might be able to look at it. We will follow up with genetics at our next clinic appointment.<br />
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I did call our pediatrician to see if he thought this could also be the cause in her issues with height and weight growth, but he wasn't concerned. It was very nice of him to call after hours and offered to be a sounding board whenever I needed him. It's very reassuring to have found such an awesome doctor who has done nothing best for our three munchkins. It's not easy when one of your children have an issue, but when all three do it's nice to have a support system. Hopefully we are closer to having an answer on how this happened.<br />
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If you are a family who is going through diagnosis, please follow me on Twitter (ebueltel81) or find me on Facebook (Erin Bueltel). I hope that our journey could bring you some comfort.Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-88942752298432105802015-05-17T09:13:00.001-05:002015-05-17T09:13:32.877-05:00One Month To GoWe are officially one month out from surgery. We are going to apologize in advance if we turn down social invitations from now until July. Our first priority is keeping everyone healthy while balancing activities for the boys. Kind of hard right now as both boys have summer colds :(. As surgery gets closer we will keep our followers updated.<div>
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In other news, I have contacted the geneticist in California that won a $4 million grant. He is very interested in having our family be a part of his study. He told us that 90% of his families have 1 child with Cranio and the rest have 2. But none of them with 3 or more. It will be interesting to see what comes of it.</div>
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The kids are doing great except for their colds. Braydon graduated from Pre-School but will move onto a Pre-K program next year. He's reall excited to participate in the all-star basketball camp at the JCC this summer and work with his favorite Bluejays. Maybe Dougie will make a guest appearance. </div>
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Ethan is talking a lot more, forming complete sentences. We've come a long way in the past couple of months.</div>
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Lauren is doing good, although I can tell she's starting to get headaches as she gets really agitated at night. But when she smiles at you, my heart melts. However she is such a daddy's girl. But the boys are sure in love with their sissy.</div>
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I hope everyone gets the opportunity to enjoy their summer. The start of summer will be a rough one for us, but we know there is light at the end of the tunnel.</div>
Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-60524225500621816932015-03-24T18:08:00.001-05:002015-03-24T18:08:56.642-05:00Another Ride on the Cranio Roller CoasterFirst off, let me apologize for not keeping up with the blog. But life with 3 kids is rather hectic. That's right, you did read that right. Terry and I now have 3 children. We are totally out numbered. We found out we were pregnant last June. In October, we found out that we were having a little girl. Lauren Cynthia made her arrival on January 19, 2015. Due to a questionable ultrasound and our family history, we knew right away by feeling her head that she indeed did have sagittal craniosynostosis. X-Rays were taken the next day to confirm diagnosis.<br />
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We were already scheduled for the Craniofacial Clinic at Children's Hospital to meet with her surgeons and genetics. Not a big deal, because this is our 3rd time doing this. Pretty much all they did was feel her head and walk out of the room. Because we pretty much know the drill. The genetics counselor is going to see if there is anyone out there doing research on craniosynostosis to see if they want to study the kids. Because it is really rare to have 3 children with the same thing and no other issues or family history.<br />
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We also got a Ct scan to determine if indeed her coronal sutures are fused as well because they aren't sure if they are or not even though x-Rays said that they were. We also got confirmation that her surgery will be June 19th at 11:00 am.<br />
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That's all I have for right now. I really will try to get an update if we hear back from Genetics.Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-53300888637135053282013-09-07T19:45:00.001-05:002013-09-07T19:45:42.969-05:00Finally Moved to Intermediate CareAt about 5 o'clock we finally got a room up on the intermediate care floor. So now we are accepting visitors if you want to come up, just text me and I can tell you the room number. However we may get to go home tomorrow so there might not be much time to visit. So go ahead and call first and I will let you know where we are at.<br />
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Ethan is doing a lot better. He is eating like his normal self and his eyes aren't as swollen anymore. He still has a lot of swelling in his head though. Right now he's watching the Michigan Norte Dame game because we don't get the special Big Ten Network channels here. So Terry facetimed his brother on our ipad and is watching the game over my phone.<br />
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I will try and post another update before we get home.Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-90274666577473655672013-09-07T05:10:00.001-05:002013-09-07T05:10:31.557-05:00Still in ICUWell, we are still in ICU thanks to an over crowded hospital. Oh well, hopefully we will get to move today. Ethan slept a lot better than he did last night. Last night was pretty rough for us. He was easily agitated and ended up needing a blood transfusion. He is doing a lot better though and his blood work had come back clean. However his eyes are swelling shut so I have a feeling we will be in here longer than we thought because of the swelling. Thank you for your continued thoughts and prayers!Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-90893516708679709442013-09-06T00:51:00.002-05:002013-09-06T00:51:31.222-05:00Into to the morning....So we are technically into day 2 of our hospital stay as it is now after midnight. Terry let me sleep for a couple of hours so I should be able to stay up for the rest of the night. Ethan is such a trooper. He already managed to get rid of his arterial line and one of his IVs. Granted he did them himself and he probably shouldn't have lost them this quickly, but if it means I get to hold him sooner, I'll take it.<br />
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He has had 1 oz of Pedialyte and seems to be holding it down, so we will start giving him an ounce or two of breast milk. Once he can keep that down, we can start Lortab and Tylenol as his pain medicine and that's one step closer to getting out of ICU and onto the regular floor. Which also means we are a step closer in taking him home.<br />
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Terry and I can't tell you how much it means to us that our family and friends took their time to text, call or facebook post that they were thinking about us. We truly felt your support and I think that's why it seemed to go so fast once we finally got into surgery. Also I truly believe you guys provided the strength Ethan had while waiting for surgery. He was barely fussy even though he hadn't gotten to eat for over 6 hours. And if you can see, he rarely misses a meal. :)<br />
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I will try and post another update once we get moved onto the regular floor.Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-6216514155473856132013-09-05T16:18:00.001-05:002013-09-05T16:18:05.438-05:00On the other sideWe made it! Ethan is getting situated in PICU! It won't be long and I will have my baby boy by my side again!<div><br></div><div>Everyone keeps telling us how great he did!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKlHHVQbK5p1V2vm0BfzIVKO8ZnCYR5_Nlgph1q4QUWMqPCHaK943bRJtogKI2-HKnxt_MbZwBwhulfeqhQS0mVfF8A-OpYFF-0OU1oLPvPlGRYRXJ-lgjOpM4bVdq2SQp83-Np4Z1SS3R/s640/blogger-image--1875031378.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKlHHVQbK5p1V2vm0BfzIVKO8ZnCYR5_Nlgph1q4QUWMqPCHaK943bRJtogKI2-HKnxt_MbZwBwhulfeqhQS0mVfF8A-OpYFF-0OU1oLPvPlGRYRXJ-lgjOpM4bVdq2SQp83-Np4Z1SS3R/s640/blogger-image--1875031378.jpg"></a></div><br></div>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-29076037616489643332013-09-05T14:19:00.001-05:002013-09-05T14:19:47.568-05:00Halfway There<span style="font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); ">Neurosurgeon is done. Bones were fused kind of weird but was fixable. Plastic surgeon is still molding skull back together. Should be done in a half hour or so. Hasn't needed a blood transfusion yet. Everything is going great so far.</span>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-50172590412066466682013-09-05T13:27:00.001-05:002013-09-05T13:27:59.401-05:00Just getting startedJust getting started as it took awhile to get all the lines in.Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-21380258099953119002013-09-05T12:37:00.001-05:002013-09-05T12:37:57.293-05:00And so it beginsAfter running behind by about a hour and a half, Ethan is finally is surgery. As we get updates, I will try and post them here. Please keep Ethan in your thoughts and prayers as well as the surgeons, nurses and other staff as my baby's life lays in their hands.Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-38506692310275643972013-08-31T09:09:00.001-05:002013-08-31T09:09:50.954-05:00It's the Final Countdown!<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0fdcud9Pmlcgjt_DiX8vA6Uhzj6lKH4z5cNQiJ0I3tKQ9XobUt6n1MzPR5hI4mcej0RZbu667Ory0QPpSHwvHM0Ah8kehw4BZguI8ZZw7GXqIOjlK-9Sq7VFbF3A-V8OjZ6WNcicxmGyr/s640/blogger-image-1104098505.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0fdcud9Pmlcgjt_DiX8vA6Uhzj6lKH4z5cNQiJ0I3tKQ9XobUt6n1MzPR5hI4mcej0RZbu667Ory0QPpSHwvHM0Ah8kehw4BZguI8ZZw7GXqIOjlK-9Sq7VFbF3A-V8OjZ6WNcicxmGyr/s640/blogger-image-1104098505.jpg"></a></div>We had Ethan's pre-op physical done on Thursday. And as long as he doesn't get sick, we got the go ahead for surgery.<div><br></div><div>Surgery will be on September 5th at 11:15. We have to be at the hospital by 9:15. I sure hope they are on time because chunky monkey can't eat after 7:15. Poor kid can't go 3 hours without eating.</div><div><br></div><div>We appreciate everyone's kind words and thoughts. The first night after surgery we will be in ICU, so at that time we would appreciate not having any visitors. However after we are moved to the surgical floor, Ethan would love to see or hear from you if his eyes are swollen. I will try and keep the blog updated during surgery. Here's to seeing Ethan in the other side.<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5reKh7vMHVRF8jjziA9tv3ICOQDu0ztIYrHjeCx2K5ZbX9r0PqeCQQ1KHsrt-Kj2f0-Flj6OaBgSf5xvszPSE9hOwvhlCXGZN_rStEZZkZY-vXnsT_K5KcwgPN2amCc9I_Cg7l43RMHth/s640/blogger-image--46226362.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5reKh7vMHVRF8jjziA9tv3ICOQDu0ztIYrHjeCx2K5ZbX9r0PqeCQQ1KHsrt-Kj2f0-Flj6OaBgSf5xvszPSE9hOwvhlCXGZN_rStEZZkZY-vXnsT_K5KcwgPN2amCc9I_Cg7l43RMHth/s640/blogger-image--46226362.jpg"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5reKh7vMHVRF8jjziA9tv3ICOQDu0ztIYrHjeCx2K5ZbX9r0PqeCQQ1KHsrt-Kj2f0-Flj6OaBgSf5xvszPSE9hOwvhlCXGZN_rStEZZkZY-vXnsT_K5KcwgPN2amCc9I_Cg7l43RMHth/s640/blogger-image--46226362.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh27lw8M12UR2qyjmwPytCmmQMCTLchlFSq4UsODGH2Hq4iLw5jdll_hLrOFfB36tbbnha6lxl3bxn1f5XqFdQ9BX9m6nPkYrO-W-D5teEWEdweYytHlZdJj1w61SPqhwdtLUZ4Ed9evGKW/s640/blogger-image-31171416.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh27lw8M12UR2qyjmwPytCmmQMCTLchlFSq4UsODGH2Hq4iLw5jdll_hLrOFfB36tbbnha6lxl3bxn1f5XqFdQ9BX9m6nPkYrO-W-D5teEWEdweYytHlZdJj1w61SPqhwdtLUZ4Ed9evGKW/s640/blogger-image-31171416.jpg"></a></div></div></div>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-42968183909486026992013-07-25T15:51:00.000-05:002013-07-25T15:51:08.048-05:003 Year and 4 Month Check-upsFor the first and only time, Braydon and Ethan were able to get their well checks at the same time.<br />
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Braydon weighs 35 lbs (80th percentile) and is 3 ft 1 and 3/4 inches tall (48th percentile). He had a blood pressure of 103/66 and a pulse of 115. Developmentally he is right on track and even above the curve when it comes to recognize numbers and counting. So Dr. Davey told us if we want to start some phonics and having him read to us we could do that. Here's to hoping I can have my own Little Einstein. :)<br />
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Ethan weighs 16 lbs 3 oz (70th percentile), is 24 1/2 inches tall (30 percentile) and head circumference of 44 1/4 cm (90th percentile). Developmentally he is also fine, so while we have an issue with Cranio, it is not causing any developmental delays and we won't be doing any further testing on the boys. We also got the go ahead to start on cereal and solid foods if Ethan likes the cereal. <br />
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So besides their funny head shape, my boys are as close to perfect as they can get. And I will take it because I couldn't ask for anything better.<br />
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<tr><td class="tr-caption" style="text-align: center;">Braydon 3 Year</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Braydon 3 Year</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ethan 3 Month</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ethan 3 Month</td></tr>
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<br />Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-67076917436343899112013-07-19T13:15:00.001-05:002013-07-19T13:15:03.932-05:00Is it GeneticHeard from the geneticist today. Which was a lot sooner than expected. So the good news is that their Cranio panels came back normal. So technically we still don't know what caused both boys to have Sagittal Craniosynostis. However the geneticist thinks that it somehow results from Terry, but I guess we will never know.<div><br></div><div>She wants to follow up with them in a couple of years, unless they show signs of developmental delays. She asked how Ethan was doing and when I mentioned his headaches, she suggested I call Puccioni's office to see if surgery could be sooner. Depending on how bad things get, we may call after Braydon's birthday party. If not the countdown is now at 48 days. </div><div><br></div><div>Thank you again to all those who have thought and prayed for us. Your thoughts and words mean everything to us.<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaJ7nK2_Od00WuE-HIoQmN8X3T2aBJpOohc-Bh86W11Q_7hJK-caTAW0IaxQlII7D1i-vSVOT9fh420WpmD-AOxtAH47kdf8iIgkV8hefuLILbegBl76KnsGvIHmdbjdjPod-dU4Mt3Tk7/s640/blogger-image-1547736374.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaJ7nK2_Od00WuE-HIoQmN8X3T2aBJpOohc-Bh86W11Q_7hJK-caTAW0IaxQlII7D1i-vSVOT9fh420WpmD-AOxtAH47kdf8iIgkV8hefuLILbegBl76KnsGvIHmdbjdjPod-dU4Mt3Tk7/s640/blogger-image-1547736374.jpg"></a></div></div>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-32828363182800125182013-06-25T20:18:00.001-05:002013-06-25T20:18:39.134-05:00Craniofacial Clinic Appointments<div><br></div><div><br></div>So the boys had their clinic appointments today. Since we have already been through one surgery we didn't have a lot of questions. So we ended up doing more waiting then meeting with the doctors. Plus our neurosurgeon had an emergency so we didn't even get to meet with him.<div><br></div><div>We did meet with a geneticist, and she's pretty sure there is some genetic reason as to why our boys have Cranio. It's just whether or not we can find it. So we went ahead and got both boys tested. Let me tell you that was a fun half hour, especially after being there for 3 hours already :).</div><div><br></div><div>We won't be able to find out the results for probably 3-4 months. Next stop on the journey is Ethan's surgery on September 5th.<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbWDqGZ4u1rgJddRl4ZgMm9dflns0GylSDAlM66KMbep_MdGBo0DgjUmu_PKB6NYZ3WRXesQd6Ey0Nc0P-BDNMv31W20xm7oFrHuHk1kr4_CAWtDMjJU51zZdpMrpSwVDdIUxJ2au81NUW/s640/blogger-image--292847218.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbWDqGZ4u1rgJddRl4ZgMm9dflns0GylSDAlM66KMbep_MdGBo0DgjUmu_PKB6NYZ3WRXesQd6Ey0Nc0P-BDNMv31W20xm7oFrHuHk1kr4_CAWtDMjJU51zZdpMrpSwVDdIUxJ2au81NUW/s640/blogger-image--292847218.jpg"></a><font color="#0000ee"><u><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5ZW3HRUd2J7k4PvFFN6iReH-owBoMTlsXKR7KljGR1INLymzC_nrVG0HfbD1Y7Xm4w3aWyn3fKQYj2hWr6rwc-ilsxxI1SaGnbmFuPGQ7Efm26CyO3oge8AizuxmOA0gD4u9IxwbUc9oe/s640/blogger-image-408667104.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5ZW3HRUd2J7k4PvFFN6iReH-owBoMTlsXKR7KljGR1INLymzC_nrVG0HfbD1Y7Xm4w3aWyn3fKQYj2hWr6rwc-ilsxxI1SaGnbmFuPGQ7Efm26CyO3oge8AizuxmOA0gD4u9IxwbUc9oe/s640/blogger-image-408667104.jpg"></a></div></u></font></div></div>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com2tag:blogger.com,1999:blog-1422221926074085679.post-25074011359040705382013-04-11T12:55:00.003-05:002013-04-11T12:55:50.845-05:00ET's CTAt just three week's old Ethan had to have his first CT scan for his Saggital Craniosynostosis. Even though the skull x-rays and physical examination confirmed the diagnosis, the surgeons still wanted to have the CT scan as a road map for the surgery. Our first go at this was to try without sedation. Because if you have to have sedation, he wouldn't have been able to eat after midnight. And I don't know about you, but I wouldn't want to deal with a newborn who couldn't eat for probably 12 hours. <br />
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However before our stop to Children's Hospital, Ethan had to see Dr. Davey for a weight check. Even though we had been gaining weight the first 2 weeks, he wasn't averaging an ounce a day. So this week we had a goal weight of 8 lbs. 15 oz, well he totally surpassed that and now weighs 9 lbs. 6 oz. I knew he went through a growth spurt, but I wasn't expecting him to gain almost a pound.<br />
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After the weight check we headed to Children's and their radiology department. I was instructed to feed him down there, but they weren't quite ready for him. So we sat in the waiting room for awhile and then finally were called back to feed him. I got him as calm as I could with both nursing and the pacifier. However he woke up when another kid came in to get prepped for his procedure because he was kind of loud. But he still remained calmed. We went back to the CT scan and he was starting to fall asleep so we put him on the table and got him all snuggled up and strapped him to the table.<br />
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He fell asleep, thank god! However when Ethan sleeps, his head turns to one side or the other and it's because his head already sticks out in the back. I wouldn't want to lay on that either. So after a lot of different positions and tape we were finally able to get his head facing forward and got all of the necessary pictures without having to use sedation. I'm so proud of the little peanut. <br />
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We will go back to the clinic on June 25th where we will meet with the plastic surgeon (Dr. Miller), the neurosurgeon (Dr. Puccioni) and Genetics. I'm assuming after those meetings we will have a better idea on when Ethan's surgery will be. However we still expect it to be when he is between 4 and 6 months old so probably sometime in August.<br />
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Again we appreciate all of your thoughts and prayers.Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-11965775468025684502013-03-30T13:49:00.001-05:002013-03-30T16:03:22.094-05:00Welcome to the World Ethan!On Wednesday, March 20th, while playing with Braydon I thought I felt my water break. We waited until Terry got home from work, and had dinner. It still felt like something was leaking but I still wasn't having strong contractions. We decided to be safe than sorry, so we packed up Braydon and dropped him off at my dads and headed to the emergency room.<br />
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We got checked into labor and delivery. They ran the nitrate paper test and that came back inconclusive. So they ran another test and it came back positive for Amniotic fluid. However I didn't know this but figured it out when they came in to put in my IV. It took them 3 nurses and 6 sticks but I finally got my IV set up. They sent us walking because I still wasn't having strong contractions. We walked for a hour with no change, so I got hooked up with pitocin and set up for the rest of the night. <br />
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At about 8, Dr Phillips came in and had to break my water again because I had quit leaking. I was still only about 2 cm dilated so they upped my pitocin again. Around noon I got on the birthing ball to try and get things going because I still wasn't progressing, that was when things got to be painful. They gave me the epidural, and I was able to take an afternoon siesta. <br />
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By 4:30 I was dilated 8 cm so my doctor decided to stick around. At 6 pm she came back and checked on me and I was ready to push. After 20 minutes of pushing, our baby boy made his appearance at 6:24 pm weighing in at 8 lbs 10 oz 20.5 inches long on March 21st.<br />
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It's here that I must admit he didn't have a name and at first glance I wanted to call him Creighton. But I quickly changed my mind and we decided on Ethan Terence Bueltel. He was perfect in our eyes and we were so happy to have him here. Especially me 3 weeks early since he was so big. :)<br />
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For those that don't know our family story, our oldest son Braydon was diagnosed with Saggital Craniosynostosis. So we were cautiously optimistic that Ethan wouldn't have it. However concerns from our pediatrician on an oddly shaped back of the head sent us for skull X-rays at his 1 week checkup. Skull X-rays confirmed that Ethan's saggital suture has also fused. So now we get to follow the same path that we followed on with Braydon. Our two boys look like they could be twins 3 years apart and now they will most likely have matching scars as well.<br />
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Terry and I appreciate all if the concerns , thoughts and prayers. While having to take this journey again, we know with God's and all of your support we can handle anything. We start our appointments with the plastic surgeon on Tuesday. We will try our best to keep everyone updated as best as we can.<br />
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Much thanks and love,<br />
Erin, Terry, Braydon and Baby Ethan<br />
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Unfortunately Baby B-2 is just as stubborn as it's big brother and mommy. The little one was more interested in looking towards my back then showing off parts of it's body. We didn't get a good look at the organs or a really good look at anything. Except the only thing it wanted to cooperate with was was revealing it's gender. We decided we wanted to tell people via cupcakes, unfortunately with the late notice not many people showed up. So we will let Braydon do the reveal:<br />
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So yes, Braydon is going to have a little brother. I think he was more excited to eat the frosting then to find out that he was going to have someone to play with, torment and have a lifelong best friend. And more good news is that there will be another boy in the family as Terry's cousin is due with a baby boy a couple weeks before us. We joke that with my history, we might get to be roommates in the hospital together.<br />
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But since we couldn't get enough good pictures and with my history of gestational diabetes, we get to go back on the 14th for another ultrasound. Hopefully I'll have some good pictures to share and good news that they don't see any risk of Cranio with the next one.<br />
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As a side note, my fasting sugar levels haven't been the best, so they have put me on insulin, but just being on it for 2 days has drastically helped my numbers. Hopefully we can maintain it through the rest of the pregnancy.<br />
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<br />Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-70055900213434538352012-09-24T15:12:00.001-05:002012-09-24T15:12:31.991-05:00Since You've Been GoneI know it's been a super long time since I last posted. But life with a 2 year old has been extremely busy. Things have been going fairly well with Braydon's head shape. However about 6 months ago we noticed that it was a little bowing in the front. We saw Dr. Miller, and he suggested we talk to Dr. Puccioni. It took about a month for us to be seen, but that's ok we weren't that worried. Pretty much he told us that the decision to have the 2nd surgery was ultimately ours. It would strictly be cosmetic and at that point in time Braydon's head was borderline in what he would recommend getting fixed. So we decided to wait and see.<br />
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In the meantime we had Braydon's 2nd birthday party. Of course it was Thomas the Train themed. Braydon loves Thomas as well as all trains. But what 2 year boy wouldn't love trains. Don't get me wrong, he loves sports too. Every time there is a football game on, he says "football awesome."<br />
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Braydon seems to be hitting his milestones nicely. He's starting to speak in sentences, knows around 50-75 words. He knows his letters and is starting to count to 5. As far as growth is concerned his head is 51.25 cm (96th percentile), 31 lbs (71st percentile) and 33.75 inches tall (26th percentile). We couldn't be more happier with how things have turned out.<br />
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Which leads us to today. We had our follow up with Dr. Miller this afternoon. He pretty much walked in and said his head looks great. That we probably won't need the 2nd surgery, but he still wants to follow up on a yearly basis to make sure the skull continues to grow. So since we got such good news today, we would figure that we would share some more good news with you. Braydon is going to be a big brother. Baby B-2 is scheduled to arrive in early April. We couldn't be more thrilled, however very cautious. While we know that Braydon's condition was a "fluke", we still are concerned that any subsequent children we have might have the same condition. If it were to happen again, at least we are "prepared" for what is going to happen.<br />
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I hope that everyone has enjoyed their summer and gets to enjoy the fall (that is if you even get one).<br />
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<br />Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com2tag:blogger.com,1999:blog-1422221926074085679.post-8941450715116319852012-01-03T20:42:00.000-06:002012-01-03T20:42:42.950-06:00It's Been A Long Time ComingWow, I can't believe it's been 5 months since I posted. But life with a toddle is interesting at best. We've been used to the walking, but now he's climbing on everything. And well let's just say he's like his mommy and likes the electronics. When I finally get time to sit at the computer, I'm to exhausted and want to go to bed.<br />
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It's been an interesting 5 months, Terry had to have a benign lymph node removed in October. We were worried that it might be cancerous, but luckily for us everything checked out. We finally got to enjoy the holidays this year, I even attempted to help cook Thanksgiving Dinner. I more or less watched my mom do it, but I'll know for next time.<br />
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We also got to enjoy Christmas with our families because we didn't have to worry about getting Braydon sick before his surgery. Unfortunately, we were the ones who were sick. So hopefully we didn't pass our germs on to everyone else. Braydon was uber duber spoiled at Christmas. I literally thought Santa threw up toys all over my living room. But you know what, he plays with them all and is super happy. He's also a very healthy 17 month old. Who would have thought that would be the case after the past 17 months.<br />
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It's hard to believe that a year ago tomorrow, we trusted our babies future in the hands of 2 surgeons we barely know. Now we owe them everything for what they have given us. Everyone comments on how perfectly round his head is and there are NO signs of brain damage or any trauma. He's a babbling, running, climbing, all 17-month year old little boy. I couldn't imagine life without him.<br />
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I hope that as he gets older, I'll be able to write more just so we aren't doing the 6 month updates. He changes so much from day to day and I would like you to all enjoy him as we do each minute. But to tie you over, here is a before surgery picture and where he's at now. And yes, he's now a blondie.<br />
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Before: <br />
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After:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsgE11r8JxSkt7pHJ8mJCYh-4pNv8YeTYCtbFbJJvnx_RSMxsDk_VDXADV6kPqUhKwyVdcnNB862_rhBQRAFYGJLQq-GIviLwB2BKZkmpe23xnMX8Gt-tOImgEj9BxK2Hp_zDJevUDWK47/s1600/010.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsgE11r8JxSkt7pHJ8mJCYh-4pNv8YeTYCtbFbJJvnx_RSMxsDk_VDXADV6kPqUhKwyVdcnNB862_rhBQRAFYGJLQq-GIviLwB2BKZkmpe23xnMX8Gt-tOImgEj9BxK2Hp_zDJevUDWK47/s320/010.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR3CHp4Yis4JE9em2Am7IUYiicm63c6DgCyrChEy6QcqDVisKMpnA3OHfRK5h4V0srM1cPfBp7lConOm8GEHqDGvKB1snWnkkV5N8W-SWtYr59auF9M5sGYcKlAJUBu7xgtU8bsuQK2UiD/s1600/028.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR3CHp4Yis4JE9em2Am7IUYiicm63c6DgCyrChEy6QcqDVisKMpnA3OHfRK5h4V0srM1cPfBp7lConOm8GEHqDGvKB1snWnkkV5N8W-SWtYr59auF9M5sGYcKlAJUBu7xgtU8bsuQK2UiD/s320/028.JPG" width="320" /></a></div>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-71281363882693885602011-07-03T10:38:00.000-05:002011-07-03T10:38:08.898-05:00Life on the run...I know it's been a long time since the last time I posted. You all probably thought I had forgotten about this blog. But life with a mobile 11 month old has been crazy. Since the last update we have gotten 2 bottom teeth and the top 2 have broken through. We learned to crawl and went to see Grandma and Grandpa Pitzer in Louisville. So we got to go on our first airplane. Over the last couple of weeks we have even started to walk. Every day Braydon takes more and more steps.<br />
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This makes me cry tears of joys. It's amazing that 6 months ago we were awaiting a surgery and wondering if our baby boy was ever going to be "normal". He was perfect to us, but to other standard he wasn't. He wasn't hitting his milestones and his head was shaped like a football. It was 6 months ago that we took him to Children's Hospital and left our baby boy's life in the hands of 2 surgeons.<br />
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Now 6 months later and you could have never known that he had super dark hair when he was born or that his head was shaped like a football. You would have never known that he cried all night long or that all he ever wanted was to be held and lay still. Because all he wants to do is go go go. He has super blonde hair and his head is perfectly round. He's walking at 11 months and hitting the milestones at a lot earlier age. He's learning to use the sippy cup, but I still think breaking him from the bottle is going to be hard. He eats all table food now, even though Terry mashes it up to look like baby food sometimes. He worries that Braydon is going to choke. Braydon likes to stuff handfuls of food into his mouth. <br />
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We always thought we were going to have a baseball player, but we might end up with a linebacker. As this little guy has learned the art of charging the dog or us and lowering his head. I worry that his head will break, but he shows no fear. He is our miracle and I thank god every day for the blessing that he provided us. Times were tough and they still can be trying, but I could never imagine having as much strength as our little boy had when he went into the operating room. I also wish I could live without fear the way he does, but hey someone has to worry right?<br />
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In less than one month we will celebrate his first birthday. It's amazing how far we have come in the past year and can't wait to see what the future has in store.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTK0TrRlyHqi1aXwNWcKFi7EmPGDR5TDBpsqVJM6w1CAO0CT0uKur-3-p6yO-xhpo8eG1FMZcKJSIjPgGX0TbHHE60F9fDjh8wxNDB-f1qnq5c-rPK6v1ji8Jc_Z6i05jK_Aok_JAzjnlZ/s1600/6+Months+Post+Op.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTK0TrRlyHqi1aXwNWcKFi7EmPGDR5TDBpsqVJM6w1CAO0CT0uKur-3-p6yO-xhpo8eG1FMZcKJSIjPgGX0TbHHE60F9fDjh8wxNDB-f1qnq5c-rPK6v1ji8Jc_Z6i05jK_Aok_JAzjnlZ/s320/6+Months+Post+Op.jpg" width="320" /></a></div>After Surgery -Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-54865671965859985392011-03-06T11:18:00.001-06:002011-03-06T11:19:47.300-06:00Braydon is an AngelBraydon's story has been posted to Avery's Angels. This is a non-profit group started by a mom of a cranio baby. She started off making headbands for little girls and now is making do-rags for little boys. Please read Braydon's story.<br />
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<a href="http://www.averysangels.net/Averys_Angels/meet_the_angels/Entries/2011/3/6_Angel_59__Braydon.html">Braydon's Story</a><br />
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</div><div class="separator" style="clear: both; text-align: left;">Also Braydon's picture is featured on the Sagittal Craniosynostosis description page.</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;"></div><div class="separator" style="clear: both; text-align: left;"></div><div class="separator" style="clear: both; text-align: left;"></div><div class="separator" style="clear: both; text-align: left;"><a href="http://www.averysangels.net/Averys_Angels/meet_the_angels/Entries/2011/3/6_Angel_59__Braydon.html">Sagittal Cranio Synostosis</a></div>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com1tag:blogger.com,1999:blog-1422221926074085679.post-38564919849313905272011-03-05T11:15:00.000-06:002011-03-05T11:15:44.006-06:00Can you believe it?I know it's been a long time, but living with a curious 7 month old, doesn't leave a lot of time for blogging. Yesterday we hit the 2 month post op mark. And you would never know that Braydon went through major surgery unless you noticed his scar. His hair is growing back blond and the incision site is healing up very nicely. Also his head shape is very good.<br />
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Braydon has started to try and crawl. He tries to grab the carpet in front of him to pull himself. But he gets around a lot quicker when he rolls. He will also scootch backwards. I can't believe how big he is getting. I really miss the newborn stage when I could just hold him and snuggle him. But I don't miss the staying up all night. Braydon will sleep from about 7:30 at night to about 5:00 in the morning. He will go back to bed if you snuggle with him for a little bit. He's eating fruits, veggies and dinners 3 times a day and will even eat a Vanilla wafer or 2.<br />
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He babbles a lot unless you put a phone or get him on the webcam. I think he gets camera shy. It drives my dad nuts because he wants to interact with him, but he can't. At least they come back a lot. He still has only really said Da Da and Ba Ba. But we are working on Ma Ma. I'm sure he will surprise me with it one day. Until next time Braydon says keep on smiling.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgysMQaPTQ0AlSJQdWHGdz-0vjhcQmrvh9-n03EBovf5G2ngSZWwRUH3Zc9BF81zdYYvZ_WsOybbLytGHc0AW2S-L_vBnVHRUCp6j2isdDGPeBHOhH3ntL5KWXiug8UeP0ZPDZyI1C-i1oq/s1600/011.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgysMQaPTQ0AlSJQdWHGdz-0vjhcQmrvh9-n03EBovf5G2ngSZWwRUH3Zc9BF81zdYYvZ_WsOybbLytGHc0AW2S-L_vBnVHRUCp6j2isdDGPeBHOhH3ntL5KWXiug8UeP0ZPDZyI1C-i1oq/s320/011.JPG" width="320" /></a></div>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-42211254689676657262011-02-04T18:25:00.000-06:002011-02-04T18:25:16.372-06:001 - Month Post OpWow it's been 1 month since we handed our little guy over to the surgeons. Braydon is doing great. His incision was infected, but it seems the antibiotics are doing it's job. His head shape looks awesome! We couldn't be more pleased.<br />
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Braydon has now said ba ba and da da. He's sitting in a high chair all by himself now, and he's upgraded to his convertible car seat. We can also "sort of" drink from a sippy cup. We are almost through the fruits and then he'll be able to eat anything. Oh boy!<br />
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Heaven help us, because our little boy is growing up so fast.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH6bAAs-n4M7eMjwYagucHl-8RDlgvYyPQ0Js-zcWk66G4PikhOc1AuBsjessJRdtDBBWXsGgw3G-roxxfHMYCKWYKzSDFqMuaEPbEOd7lwyt4FikMl0slPE1BQ0r3Suv2hqVm8GZNoeo-/s1600/020.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH6bAAs-n4M7eMjwYagucHl-8RDlgvYyPQ0Js-zcWk66G4PikhOc1AuBsjessJRdtDBBWXsGgw3G-roxxfHMYCKWYKzSDFqMuaEPbEOd7lwyt4FikMl0slPE1BQ0r3Suv2hqVm8GZNoeo-/s320/020.JPG" width="320" /></a></div>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com1tag:blogger.com,1999:blog-1422221926074085679.post-30683679035469068712011-01-29T09:12:00.000-06:002011-01-29T09:12:59.663-06:006 Months Down, 6 More to GoWe started off the week by seeing Kristin at Dr. Puccioni's office. She's the physician's assistant to Dr. Puccioni and she is super nice. When she walked in she was amazed at how great Braydon looked cosmetically. Like Dr. Miller, she was sure that Braydon wouldn't need another surgery to remodel his skull. Braydon was giving her the stare down, it sure does take awhile for him to warm up to someone. But at least he didn't cry when she was touching his head.<br />
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She thought he was doing really good. She told us that it would probably take awhile for the soft spot to close, but in case it doesn't they can take a portion from the other side of his head and split the skull and use it to fill the hole. And then put the remaining piece back. Then it should grow back in. She also told us we can start putting Neosporin on his incision site and start scraping off the scabs. I'm not sure about the picking part, but we definately could put some Neosporin on his head. We have to go back the first part of April to see Dr. Puccioni and hopefully he will clear us and hopefully we won't ever have to see him again. Not that we don't think he's a nice guy, I just don't ever want to have to deal with this again.<br />
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Kristin was also very helpful in answering our questions. As long as Braydon's skull fills in the big holes, he won't be restricted in any activities. He'll be able to play football, baseball or any sport that he wants to. Or if he wants to be a dancer, he'll be able to do that to. My money is on a Steven Tyler replica. That boy can scream. :) I also asked her about the possibility of some brain damage because Braydon won't roll over from his tummy to his back and he was having a hard time sitting up by himself. My fears were put to ease by her and also by Dr. Davey at his appointment. Kristin said that she doesn't believe that there was any damage, and said if you had all those headaches all you would want to do is lay on the couch. So it probably made him feel better to lay down.<br />
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We then met with Dr. Davey for his 6 Month Check-up. His stats were 18 lbs 5 oz in weight (he gained a pound since surgery), 25 3/4 inches in height and head circumference was 46 cms. His head size didn't increase since his surgery. He is now in the 62nd percentile for weight, 23rd for height and 94 for head circumference. Since Braydon had his surgery, he finally got on a curve line for his head. Before he was way off the charts. :) I would have thought that since his surgery, his head size would have decreased a lot. But Dr. Davey told us that most of the time Cranio doesn't really affect the head size to much. He just told us Braydon is going to have to have a big hat size.<br />
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His check-up went great from all other standpoints as well. I told Dr. Davey about Dr. Byrne's concerns about his eyes and my fears were put to ease. There is absolutely nothing wrong with his eyes. Thank you to the lord that nothing else is wrong. also he told us that his little pee-pee is getting better. We still have to pull the skin back, but we may not have to surgically fix it after all. He told us that developmentally he is right on par. Since he can at least roll over one way, that is perfectly fine and as long as he can sit up while being supported he is right on track.<br />
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From a diet standpoint we still need to give him about 32 ounces in breast milk and formula. Once we get through the fruits (we have apples, pears and peaches to get through), we can start pureeing what we are having for dinner and give it to him. He also can have Biter Biscuits, but I have no idea what those are. So if someone could tell me that would be great. In a couple of weeks we can start Cheerios and Puffs along with crackers and yogurt. By the time he is 8 months old he can have bread and some soft food. By the time he is 9 months old he should be eating finger food. I'm sure I will have to wrap my house in plastic wrap when that happens because he is already throwing stuff. :) Or Dakota is going to become a fat dog because I'm sure Dakota will eat more than Braydon.<br />
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Braydon had to get 3 shots and the drink. Poor little guy, but he did so well. We do think that he had a little reaction to the flu shot, because he was running a fever on Friday. And that has never happened and that was the only new shot they introduced. I guess we can confirm our suspicions when we bring him back in a month to get his second dose.<br />
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We took him to get his pictures taken after his appointment. I know it was a genius decision to take pictures after his shots. But it was the only time we really had. It took him awhile to warm up and he only lasted about 20 minutes. But we got enough good shots. I'll share some of our favorites with you. Until the next time Braydon says keep on smiling.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQc16N3ZaxT6B3HwUqUhsfxKsHS2ctMFFVmlH0jZyWQTCE9fI4zngVYwInewLwWpOxMYznn85XW0wcjv-Gu0tWXdiwDoZQwem4eByj97eAXEWh7ION7M08Zl5WQhHHXuQuhyZ3N5OLsuQP/s1600/0056.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQc16N3ZaxT6B3HwUqUhsfxKsHS2ctMFFVmlH0jZyWQTCE9fI4zngVYwInewLwWpOxMYznn85XW0wcjv-Gu0tWXdiwDoZQwem4eByj97eAXEWh7ION7M08Zl5WQhHHXuQuhyZ3N5OLsuQP/s320/0056.jpg" width="320" /></a></div>Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0tag:blogger.com,1999:blog-1422221926074085679.post-77042615789159054622011-01-21T15:23:00.000-06:002011-01-21T15:23:06.093-06:00He looks good, oh he looks so good.Had our first follow-up with Dr. Miller today. And he says Braydon looks great. The stitches will flake off here in about a couple of weeks. It will take a while for the skull to regenerate itself and fill in the soft spots. But if the rare chance it doesn't they will have to go in and do some bone graphing. He told us about the minute chance of needing a 2nd surgery for the forhead but would be totally surprised if he needed one as his forhead looks pretty good right now. We won't have to go back and see him until April 22nd. So Braydon will get checked out right before we leave for Louisville. Hopefully there aren't any setbacks between now and then that would make us have to cancel the trip.<br />
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Next stop on the recovery train is Dr. Puccioni's office on Wednesday.Erin Bueltelhttp://www.blogger.com/profile/14048894036128925189noreply@blogger.com0