tag:blogger.com,1999:blog-39488617300856675502024-03-05T14:41:03.485-08:00Ellie's MissionNataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.comBlogger43125tag:blogger.com,1999:blog-3948861730085667550.post-84290479567055597122011-12-06T06:02:00.000-08:002011-12-06T06:26:46.227-08:00I am thankful for....December always seems crazy for me between birthdays and Christmas and school activities, it seems there is always something that needs my attention. This year Sydney is playing in a different basketball league and games start this weekend so I'm adding that too. But I am determined to really enjoy this season. I didn't mention this month is also one that tends to bring up lots of memories of Ellie in the hospital. Although she is doing well, I can never forget what we went through 4 years ago this month. We were so close to losing her and it is really hard to just forget all that we went through....especially rushing her to Kansas City during a snowstorm. I still get a little worried when it snows....what if something were to happen again? Would we make it to a hospital in time? Sooo...my focus this month is on what I'm thankful for.<div><br /></div><div>Today I am thankful for my incredible family. For my wonderful, supportive husband and 4 incredibly loving and resilient girls. God has indeed blessed me! </div>Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com2tag:blogger.com,1999:blog-3948861730085667550.post-38792383146221698702011-12-01T06:17:00.000-08:002011-12-01T06:33:53.991-08:00Hurray!Okay, so after trying forever to remember how to log in to this site again (yes, I already know how sad this is) I have finally succeeded. I have very much missed blogging. <div>Life continues to be busy at our house with the 2 big girls involved in sports and the younger 2 getting into everything possible and testing us in every way:-) Ellie stayed hospital free until last month when we found out she had developed a stricture (narrowing of the esophogus at her scar site). On Nov. 2, we took her in for a procedure to widen the esophogus (they put her under anesthesia and used a "balloon" to break the stricture). The procedure was successful and we were able to take her home the same day. On Tuesday, I took her down to Children's Mercy for an Esophogram (swallow test) because she started to get things caught in her throat again. It is again showing signs of narrowing, but not nearly as bad as the last time. She has been scheduled to have the procedure again in January. We will continue on this same path until it no longer narrows which her surgeon has assured me will happen. I am so thankful for such an easy fix. More later.<br /><div><br /></div></div>Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com0tag:blogger.com,1999:blog-3948861730085667550.post-78886316660978065362009-09-24T10:55:00.000-07:002009-09-24T12:19:14.749-07:00Step Up for Down Syndrome<div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyYdA3OxWdLeaBzHtRDx0FAKdeq2AVnMHxoB4bHFwGLOfGlA9McMLs0Ht2G0ExjWLq4QuUUtQrcvaYD0l1x9dzgpVDqGjYO9og9SXQTovWNxe-ByW1YqMa7HzvQe1ni-CEHBwYh46n9Fs1/s1600-h/Sept-Oct2008+153.jpg"><img id="BLOGGER_PHOTO_ID_5385114660436325122" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyYdA3OxWdLeaBzHtRDx0FAKdeq2AVnMHxoB4bHFwGLOfGlA9McMLs0Ht2G0ExjWLq4QuUUtQrcvaYD0l1x9dzgpVDqGjYO9og9SXQTovWNxe-ByW1YqMa7HzvQe1ni-CEHBwYh46n9Fs1/s400/Sept-Oct2008+153.jpg" border="0" /></a><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiarjtuSWCC0XGpUrzKu2Si4XAX5XyPCIYGhkmuoUBT5n7ufnwgrkUDrPLjH5LPTIgeUpycf5brLKhdNfUt_RNf7QsYq_hkTDzKWULBkaaFev7wWpB6idGb2Xea4DFnQueiqcy3CpAXsiDh/s1600-h/Sept-Oct2008+150.jpg"><img id="BLOGGER_PHOTO_ID_5385114651130144066" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiarjtuSWCC0XGpUrzKu2Si4XAX5XyPCIYGhkmuoUBT5n7ufnwgrkUDrPLjH5LPTIgeUpycf5brLKhdNfUt_RNf7QsYq_hkTDzKWULBkaaFev7wWpB6idGb2Xea4DFnQueiqcy3CpAXsiDh/s400/Sept-Oct2008+150.jpg" border="0" /></a><br /><div>Hi Everyone,<br />It's that time of year again. Step Up For Down Syndrome (previously known as Buddy Walk) is Saturday, October 24th. This is the fundraiser that raises money for the Down Syndrome Guild of Greater Kansas City. We had so much fun last year...the kids had a blast!! There was food, games, pony rides, music, inflatable bounce houses and so much more. It all ended with a walk in honor of those with Down Syndrome...in my eyes, a walk in celebration of Ellie and all she has survived! You can register to walk with our team that day or you can make a donation to the Down Syndrome Guild by clicking here: <a href="https://www.syssolutions.com/kcwalk2009/Main/MyTeam.aspx?Reset=Y">https://www.syssolutions.com/kcwalk2009/Main/MyTeam.aspx?Reset=Y</a></div><br /><div>If you are unable to do either, I just ask that you spread the word. Every bit that the Down Syndrome Guild receives goes toward supporting those with Down Syndrome and their families.</div><div>I hope you will be able to participate with us in whatever way you can!! Thanks!!!<img id="BLOGGER_PHOTO_ID_5385114670060187602" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVJpGfY9EJd6rq9sGNIwCMHGuoR_j-92EKU6w4dUAyseX9mBK4sy87zJcIA2UIIMueaN9OE3xcGC-ygq6C_ObCaKOez175zX-YwNO_JjUykFzwf4hOFH5e233kv2lfMd211QxGnB6mS1lP/s400/Sept-Oct2008+145.jpg" border="0" /><img id="BLOGGER_PHOTO_ID_5385114671743082242" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfdJDVh3tGcWCN_Bg54pI8rp0NIWYWM61cc-MgaKHaC3bCq0rI_6MI-4cAPMwiP9PgOwNgQZf1W2p_kxG8gz6DUh_lrwSWW-5raEEJ09cMOfTwu3t8dlLt7iJGL1Z08XofkoKKiCXmQHbU/s400/Sept-Oct2008+147.jpg" border="0" /></div></div></div></div>Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com0tag:blogger.com,1999:blog-3948861730085667550.post-75654510217924137632009-08-24T06:12:00.000-07:002009-08-24T06:44:35.704-07:00Too long....<div><div><div><div><div>I've been away from blog too long and neglectful in my updates. It's been a busy summer with all the new things that Ellie and Maddie have been doing and with Sydney playing softball. Now we are into school and soccer season for Reagan and Sydney. Well, Ellie is doing awesome! No more hospital stays and we finally got to finish those dreadful shots at the end of July. Her poor little legs were bruised all summer long. Since coming home, she learned to pull-up to stand, cruise, stand up on her own and, as of a week and a half ago, take her first steps. It does make one wonder how much her button (feeding tube) was holding her back. She is eating and drinking well...even using a sippy cup (without the no spill piece and with our help so it doesn't spill). At last weigh-in (middle of July), she was 20 lbs, 2 oz. Finally gaining back the 2 lbs she lost before the hospital and then adding some extra (she was just over 17 lbs at her worst in April). Her vocabulary is growing everyday, both speech and sign language.</div><br /><div>Growing right along with her is Maddie, who learned to sit up, crawl, pull to standing, say Mama, Dada, hi and nigh-nigh and now stand on her own all in one summer. I know that she will be taking her first steps soon. It's amazing how much they have picked up from each other. They are so good for each other!<br /></div><div>Sydney lost her front tooth finally and the other front tooth is fast on it's way! Reagan is, well, Reagan! Always into something and always keeping us on our toes. Watching her practice soccer, I have high hopes on how she'll play. She's petty excited.</div><br /><div>That's it for now, as I'm doing this one-handed (Maddie in my arms) and with Reagan talking to me. Here are some pics of the girls from this summer: <img id="BLOGGER_PHOTO_ID_5373523787919919442" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggcv3WMX4qItSCslY29ujbFW2j-LxMsMB5k4zG2Umow_VnhV5atyBLoCWdOr5pJo8xXKUgjsELPSQY2dzYM8M5ZXT7GGtLDrxsPxDlYZUjpzFDoL6r9VoZjpXA_g-0ZZXCMPgRR6SiNvq3/s400/girls+pics+2+054.jpg" border="0" /><img id="BLOGGER_PHOTO_ID_5373523778398379330" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYxvR6-4VYaPeBxMODlvKjH9dLDyHF95GdHYUmjN_lIag9fSNnRn8I-i2HHgPI42uEbJwVZ5cIwLDdeZ3IGI-2-B4_aTU6NsH1YfiaKPU0eJt2YY8XrOZhlo43wnLJdBRbnNpdq341F-2S/s400/girls+pics+2+079.jpg" border="0" /><img id="BLOGGER_PHOTO_ID_5373524246337341410" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCGspQdGhxn9k0Y7cCuQsTI9qC7TgXU7TAWYKz547DLD-_bTDqb3LcBp1gccOFsElCzxhTfMbp7mpMceCOJ-6IwfASaXAVKpGYoORGKt8NvJk2sb5SuaDkhhj0Zz6p7s71_vQnA3XjPgRf/s400/girls+pics+2+070.jpg" border="0" /></div></div></div></div></div><br /><br /><img id="BLOGGER_PHOTO_ID_5373523769872523186" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfen3XtNNkzkVYVL7KbpfwxfV2VxAnW7ZAPcU-9h932sLpyCb2NFf4uf5b5K7K7ROZL30c8rBWVPyK-5-ay972I3QOM2qV0bz82WhBcTjYuN2HW8IZ_6iicDUi2XYgZB7R9yofQwEgPZmI/s400/girls+pics+2+050.jpg" border="0" /><img id="BLOGGER_PHOTO_ID_5373523764431515266" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaaoPkwLmco8zI9-6Y6Z7_6JDg4WGHqzUq_ioyUPXigBEqNVzxQsyOsQ8T3hwyEsW8biq3OkFp2iYIFeuwkdx0sfe0lFeJ0Drw5I5Cr0Rbc-dl3ZdeeWgWI13AZ0WEzP5XK0HyAZK-RBZt/s400/girls+pics+2+012.jpg" border="0" /><img id="BLOGGER_PHOTO_ID_5373523755120637042" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYCloKT7DE9izcSUepqfC9RKk-boSrlAyv1lI8h7Yp5JKCwyJLrfFTN2QoeNZsubyJdgaJEuO2DaJxM7M4Eo1c3mukRJ36sOUWlfn0GPL6c67rjWYj3xYOKGsfe9K6_75dUBxPW68TOx4k/s400/girls+pics+2+006.jpg" border="0" />Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com2tag:blogger.com,1999:blog-3948861730085667550.post-10827527390715049092009-04-20T21:02:00.000-07:002009-04-20T21:09:53.281-07:00Ahh...The Sweet Smell of HomeWe finally arrived home today. I have all the girls asleep so I will have to make this a quick blog...a little time for me. Basically, her surgery went well and her site is healing nicely. She decided two days after surgery to go on a drinking strike...great timing, huh? People would ask what was wrong, is she having trouble swallowing? My answer: she's two! I'm just adding as much liquid (cereal, milk-soaked graham crackers) to her diet as I can get in and hoping for her to be happy she's home and start drinking again. The reason for the delay in getting home was taking care of that stinking blood clot. Small as it is, she still has to see a Hematologist, and get those shots I told you about (2x a day for 3 months). Well, just getting it to a functional level to go home on took several days. I got a bit pushy toward the end, but it got us home. So here we are. I'll add pics soon and try to update a bit more.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com2tag:blogger.com,1999:blog-3948861730085667550.post-48475311693609128922009-04-15T08:59:00.001-07:002009-04-15T09:00:26.068-07:00All WellEllie is in recovery right now. We hear she did well during surgery and they were able to close everything up. We're anxious to see her and to see how she does with eating and drinking today. I'll keep you posted.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com1tag:blogger.com,1999:blog-3948861730085667550.post-19149623365821667602009-04-15T07:19:00.000-07:002009-04-15T07:24:53.207-07:00# 9Ellie just went into surgery about 15 minutes ago. They will be closing her j-site. First they will close the intestine(jejunum) and then they will close the abdominal wall. There should be no leaking after it is closed. They say it will look like a dimple. She is able to eat and drink after and we are all hoping she goes straight to it and has no aversions. I will update more later after her surgery.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com1tag:blogger.com,1999:blog-3948861730085667550.post-78314888769874452872009-04-13T20:30:00.000-07:002009-04-13T20:43:47.902-07:00Shots? Seriously?Yes, sounds like I will begin my training tomorrow on how to give Ellie shots. I don't know all the specifics yet, just that I will be giving Ellie shots of Heparin after we go home. She is currently on Heparin to thin her blood and keep it from clotting (she has a small clot where the pic line got occluded and thinning her blood keeps the clot from getting bigger). She will also begin seeing a Hematologist about the clot...just what we needed....one more doctor. I was also told that she can never have a pic line on that left side again because of the clot.<br /><br />The wound care nurse came today and we took off the bag and looked at her site. It looked great compared to before. I think we are definitely looking at Wednesday to close her site. If all goes well and she takes right back to eating and drinking, we should go home Thursday. That's the plan anyway, but not all plans go as they should. Keep your fingers crossed.<br /><br />Today Ellie was happy and playful in her crib. She even pulled herself up to kneeling despite the big splint on her leg that holds her IV in place. It's so nice to see her happy and loving again. She has not been herself for almost 2 weeks. It has also been nice visiting with the nurses and care assistants that she had a year ago. A few still remember her well...especially the one with her tonight. That's all for now.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com1tag:blogger.com,1999:blog-3948861730085667550.post-52259447365632856982009-04-12T16:07:00.000-07:002009-04-12T16:14:33.401-07:00Happy Easter!Wishing you all a Happy Easter! The girls were excited that the bunny did not forget about them and knew that they were visiting Ellie. The Ronald McDonald house provided an incredible brunch and Dave's sister invited the girls over for an egg hunt. So it was still a happy Easter. The only down side was having to say goodbye to Dave and the girls at the end of the day. It breaks my heart to see Reagan cry. When Maddie and I got back up to the room, Ellie was sitting up and playing with her new Easter bunnies and throwing her glasses off like usual. No new news today except that her arm looks much better and the new pic line is working well....incidently, we had a different nurse last night.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com1tag:blogger.com,1999:blog-3948861730085667550.post-35634188132416803662009-04-11T14:23:00.000-07:002009-04-11T14:56:44.543-07:002 HensonIf you've been to Children's Mercy Hospital then you know that means Ellie has been admitted and is staying on 2 Henson. The last day of March, Elllie had her button taken out (NO Tubes!). It should have been great news, but we spent the following 9 days with her site leaking, irritating her sensitive skin, trying to stay hydrated, fighting occassional vomiting and trying to control pain. The last straw was Thursday morning. She spent the entire night awake and after only 2 ounces of milkshake, she threw up and it had a green tint with brown flecks. Green usually means bile and brown is dried blood. Her surgeon's office sent us to the ER at Children's. After 10 hours, 5 tries for an IV line, 2 different doctors, lots of explanations, lots of frustration,1 x-ray and 1 bag of fluid; Ellie was finally admitted. In a nutshell, she was severely dehydrated from the loss of fluid (no matter how much I gave her, we couldn't keep up) and extremely constipated (colon was full--pain med was constipating and not getting enough fluids to move it out). She has had lots of fluids to hydrate her now and is getting enemas to help her bowels. A wound nurse came in to find a new way to protect her skin from leakage and help it heal until the hole can be closed. There is a bag attached to it to collect fluid (there's still quite a bit coming from it). A pic line (catheter that administers fluids into the artery) was placed yesterday so she could receive nutritional fluids. Unfortunately, I walked in this morning to the arm that had the pic line being purple and swollen. NOONE had noticed and it was very obvious. Yes, I was livid! I got her nurse in and a charge nurse who said they'd never seen anything like it. A surgeon on rounds took a look and sent her for an ultrasound to see if it was a blood clot. The ultrasound showed that her catheter was the same size as her vein and was blocking the passage of a lot of her blood. Apparantly kids with Down Syndrome can have different sized veins than typically seen. They also said it could have been scar tissue from previous pic lines blocking it. There was a little clotting but they felt sure it wasn't cause for alarm. The pic was pulled and a new line (smallest catheter they have) placed in her other arm. As soon as they pulled the pic, her color started returning. It is still swollen but that it supposed to go down. Other than that, she is happy and playing now. They hope to close the hole middle of this coming week.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com2tag:blogger.com,1999:blog-3948861730085667550.post-9371446094871071092009-03-26T20:51:00.000-07:002009-03-26T21:17:27.561-07:00Trial RunWhat a long week spring break was. We planned on getting some things done around the house, but it didn't work out that way. Ellie caught Reagan's stomach bug, which then turned into a bad cold and finally into her first ear infection. This was the first ear infection any of my girls have encountered. It was not a moment to celebrate. After spending the entire night awake with her and at the doctors' offices the next day, I got sick and then my cold turned into a sinus infection. Oh well. All the kids are better now and I'm finally on antibiotics....yeah! <br /><br />In the meantime, the kids have been busy. As promised, here is the update on the big girls: Sydney's basketball season ended last month and we've already started soccer season again. She played her third game last weekend and is finally making some good contact with the ball. She's in the soccer league this season (Sunflower), on an all girls team and we really like the coach. Her highlight of the last two years finally came this past weekend when she realized she had a loose tooth. She has been asking me for the last two years when it was going to happen and it finally has. She can't wait to loose it.<br /><br />Reagan is really enjoying pre-school and even learning to write a few letters. Her teachers say she has some of the best fine motor skills in the class and that she loves crafts and is a perfectionist. Last weekend, Reagan was going outside to play with her daddy and she came into the living room in a dress and jewelry. I asked why she was so dressed up and she told me, "Because I want to look fabulous. Fabulous means pretty!". Too cute. I think we've read "Fancy Nancy" one too many times!<br /><br />Maddie is growing like a weed. She weighed in this week at her 4 month checkup at 14 lbs 10 ozs. A week ago she rolled from her tummy to her back and this week she surprised me with rolling from her back to her tummy. She loves her sissys!<br /><br />As for Ellie, we are on a trial run...hence the title of my post. On Tuesday we were given the okay to do a week long trial run of NO TUBE!!! Yep, that's what I said. So far, I think she's doing great. Yesterday she drank 17 oz of milk and today it was 19 oz...of course she was eating too. The drinking strike is over I think. I'm tracking how much and what she eats and drinks everyday and sending it to her nutritionist on Monday. She is going to calculate the calories and then I will take it all to her surgeon on Tuesday and talk to him about a plan for when we can take the tube out. Of course all of this is dependent on how she eats and drinks and if she can gain weight. On Tuesday she weighed in at 19 lbs 8 oz. A 7 oz gain from the previous week when she was so sick (we supplemented with formula feeds to get her weight up faster). I'm just hoping for some progressive weight gains. We've been in the 19/20 lb range for months now. So, I'm hoping for a good week and good news next week. Oh, and she has a new word, "eyes". We've been working on body parts. The only problem is that she wants to use Maddie has her part finder. Until next time....Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com0tag:blogger.com,1999:blog-3948861730085667550.post-46065816389475727842009-03-15T14:04:00.000-07:002009-03-15T14:11:06.171-07:00The Sickies...How I hate when the kids are sick. Reagan started it last week while I was updating the blog. Fever, throwing up, coughing...fun stuff. Then just as I send her back to school on Wednesday, Ellie gets it and right as Dave was leaving town for 3 days. Now we are down to Ellie and Maddie coughing and having runny noses. I was sooo happy when Dave got back last night. I'll update more later when I'm not holding a baby.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com1tag:blogger.com,1999:blog-3948861730085667550.post-86386639386809238232009-03-06T20:25:00.000-08:002009-03-06T20:52:48.463-08:00Ever changing...I just write about all her changes last night and then she goes and adds more to the list. Today she said "ba-by" and she looked at Maddie and when I asked her where her nose was, she pointed to mine and then found hers. Then tonight after Dave left, I put her in her crib to play for a few minutes and Reagan comes in telling me Ellie is standing. I said, "no she's not, she's probably just kneeling" but went with her to look...and sure enough, she had pulled herself to standing, then started to cry because she was stuck. I'm so proud of her!! Sydney and Reagan get just as excited about her new accomplishments. It's such fun.<br /><br />I didn't get to share about how Ellie's eating is going last night....Reagan got sick for the 2nd time yesterday. Must have been a 24 hr. bug, cause she seems to be doing fine today. As for Ellie, she eats 5 meals a day and drinks 14-16 oz of milk. Yes, drinks. We finally found a cup that works and that she likes about a month ago. Her teacher brought little 1 oz plastic medicine cups and she seems to like those best. We worked with a swallow specialist from Early Intervention for a few weeks and now she is swallowing faster (it is definitely not as delayed as it was). She only needs 4 oz of water by feeding pump now. We are getting so much closer. Of course, it is always 2 steps forward, 1 step back...she's is on a bit of a drinking strike since her minor surgery. She's decided she doesn't like the cup so well now, but I'm doing my best to pack on the calories with her food and keep her from getting dehydrated. This week she weighed in at 19 lbs, 12 oz. Only a couple oz gain from 2 weeks ago...so pretty much maintaining. The nutrionist will weigh her again next week and I'm diligently keeping track of what she eats/drinks/calories.<br /><br />As for Maddie, she is quite the chunk. At her 2 mo. appt. she weighed 11 lbs, 13 oz...over half the weight of Ellie. She is 3 1/2 mo now, I can't imagine what she weighs now. She smiled at 6 weeks but didn't get really good at it until last month. She was a bit colicy: my reason for the hiatus from posting. She definitely is one that likes to be held: mom, dad, Sydney, whoever will take her and rock her to sleep. But she's still a keeper. It's definitely crazier around her than it used to be. At times, I imagine it's like having twins. At night, I rock the two little ones to sleep after putting the older girls to bed. Ellie has to be on the tube at night still, so no tough love yet in the going to be catagory.<br /><br />Well, that's enough for now. I'll update on the big girls next time.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com2tag:blogger.com,1999:blog-3948861730085667550.post-55901018688398848542009-03-05T20:03:00.000-08:002009-03-05T21:26:11.678-08:00Ch-Ch-Ch-Changes....Not just the blog site, but lots going on with Ellie. She has changed so much in the 3 1/2 months since Maddie was born. She is quite the crawler now; something she had barely started right before Maddie was born and then just took off on. While I was in the hospital, she pulled up to standing using Dave's hands. Just a couple weeks ago, she pulled to standing on her own. Slowly, but surely, it is coming along. She gets on her knees to reach things and has also gotten pretty good with the one knee, one foot stance (a beginning stance for standing). She has shoe inserts to help her stance. She tends to use the inner part of her foot to stand rather than standing flat -footed. These should help. She also locks her knees and we're working on that. She also using some new fine motor skills like stacking a block and putting small things inside of different sized containers. She's finally using some sign language (fish, bye, hi, play, drink, milk, all done and eat) and has really shown an interest in copying words and sounds lately. Just this week she said "bee" (she likes when I beep her nose), "buh" (book) and sings the "e-i, e-i, o" in Old McDonald and I yih yih yih (whatever that song is called). Other things she has said in the last couple months, fish, hi, night-night, bye, no, nose, and my favorite, "no mama". Of course they are not so clear that anyone can understand, but they are definitely words she is using.<br /><br />She absolutely loves Maddie. She was jealous the first couple weeks and promptly showed us her first tantrum when we brought Maddie home but now all is fine. She now loves to kiss her and pet her head. If you lay Maddie on the floor where she can get to her, she crawls right up and just stares into her face. The only time Ellie tends to get jealous of her now is if she is hurting and I can't hold her alone and comfort her. And yes, she's giving kisses, complete with a smacking sound and hugs now. We all love that, especially Sydney and Reagan.<br /><br />.....I'll update more later, Reagan's sick.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com1tag:blogger.com,1999:blog-3948861730085667550.post-23735217973517404932009-02-26T05:59:00.000-08:002009-02-26T06:32:59.926-08:00# 8<div><br /> </div><br /><div>No, this is not the number of kids Dave and I have decided to have:-) It is the number of times Ellie has gone to the operating room now. It's been a busy few months for Ellie, all of which I'll update on later, but medically we've had a few issues to deal with. Last month, we made a trip down to Children's Mercy because her button site (located in her intestine and where we hook up her tube) looked really red and angry and she was running a little fever (100). Ellie rarely runs a fever so I thought maybe the site was infected. Our ped. let us put her on antibiotics and away we went to KC. The nurse practicioners (NPs) looked at it and so did the wound care nurses. They decided to change out her button and put in a new one and we were taught a new way to care for her site until the leaking stopped. This all went great and the leaking went down some and then a couple weeks later it all started again. So 3 weeks ago, I called and talked to the NPs again and sent them this photo:</div><br /><p><img id="BLOGGER_PHOTO_ID_5307107836846560050" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzjW9cBf-C-7oqsiFYNaRA14AI7sQnESTpfWEHT09H7R0rJ8DdqwF0fE9IGy94W18jbZUjbeHs1n2EHVK1vrGOkMe1gAGmtwaqXHqiTR9T_Fve5mDG8kQ_ioMUIiXEwcFvtfc7KmTvUxhM/s400/stoma+001.jpg" border="0" />Ouch!!! Right? Yeah, they called back immediately and told us to come back in. They gave us a new way to take care of her site but still didn't know why it was leaking so much. On the way home, Dave suggested maybe it was because she was eating and drinking so much now (16 oz plus whatever she eats!). Made sense to me. Then last week, one of her stitches that has been working it's way out for the last year, finally got infected (the pimple by her belly button in the picture). Back to KC we went. We saw her surgeon this time and he tried to take the stitch out but couldn't get to it. He said he'd rather put her to sleep than torture her to get to it. We asked him about the leaking too and he agreed with Dave. He had only two suggestions: Take the button out and use an NG tube (nose to stomach) for the 4 oz of water she gets daily or deal with it until we reach our no tube goal (20 oz of fluid and gaining weight). I went with the deal with it option. A year of passing tubes through Ellie's nose was enough for me. </p><br /><p>So we made an appt. for Ellie to get her stitches out this past Monday. We had to go through all the same operating room procedures including kissing her goodbye as the nurses took her away. This part never gets easy. Even though it was the simplest operation she's undergone yet, it's still an operation. There's always a risk (we found out the hard way last year). But 25 minutes later, it was all done. He took out the infected stitch, along with another that was working it's way out. He said there was one more he could feel but it was in the muscle and he didn't want to accidentally cause a hernia. So, I looked at Dave on the way home Monday and said, "So does this count as # 8?". His reply," Yep." If only they all could have been this easy. More updates later, but I'll leave you with this:</p><img id="BLOGGER_PHOTO_ID_5307113025236774770" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 384px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5yBtN80xMCBuKWRV3n9ih444Q94-c-1s9iRwfQ3E9EbrjF6kg3XHZo5hk4haUKG_qNb1PQvHfMVXz5W6c9i7jFPBifScF7MzY5Q8Uq76u6qdm81-fho9xf-3nep0dmMlkRVDJyqRjeZad/s400/Dec+2008-Jan2009+229.jpg" border="0" /><br /><p><br /></p><br /><div></div>Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com4tag:blogger.com,1999:blog-3948861730085667550.post-30843711396828702892008-12-29T10:49:00.001-08:002008-12-29T18:18:19.628-08:00Eat Your Heart Out Anne Geddes<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT91wxiRncCsQuuBT4PFdXV70VTpY2-l_D4DBWlFDtSLShg8Dex8yArs5L0Ow0RtzTjyrJm3zGIgC0KdBEJxJncna2mygLO0CvkouBv-0u_pPIJwVbrpWxaEXy_JckluOC4D2H4fr1B1yJ/s1600-h/Dec+2008+162.jpg"><img id="BLOGGER_PHOTO_ID_5285396805780644594" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT91wxiRncCsQuuBT4PFdXV70VTpY2-l_D4DBWlFDtSLShg8Dex8yArs5L0Ow0RtzTjyrJm3zGIgC0KdBEJxJncna2mygLO0CvkouBv-0u_pPIJwVbrpWxaEXy_JckluOC4D2H4fr1B1yJ/s400/Dec+2008+162.jpg" border="0" /></a> My favorite!<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhec7WhoFPp4Xflvfsx5Gh7OWg0-zCTiiSW3ylVWV9__mTTm8uSDDyel-0AlnrrMqWqj9hCngKNS4bRZjTmvkjoqtapeCtZz4r6mBc1VybS3_RKTFsJjplla5NJjC5F6uywxHNfa1iLnF7Z/s1600-h/Dec+2008+160.jpg"><img id="BLOGGER_PHOTO_ID_5285396801837393698" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhec7WhoFPp4Xflvfsx5Gh7OWg0-zCTiiSW3ylVWV9__mTTm8uSDDyel-0AlnrrMqWqj9hCngKNS4bRZjTmvkjoqtapeCtZz4r6mBc1VybS3_RKTFsJjplla5NJjC5F6uywxHNfa1iLnF7Z/s400/Dec+2008+160.jpg" border="0" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbsRElKFFxaKhHkrQ4fTUqJbyvJngRq0QHcUZTElpR5jpfRA2ZGJdDbhEmbNyJKT-Cy6DddbDh1IL0LLO496QS4EhisF9CokjCSqhLZ-Lttbde4S8BFdm07zjIfkKPLs5ZCpizD7JxLMs9/s1600-h/Dec+2008+158.jpg"><img id="BLOGGER_PHOTO_ID_5285396794353757458" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbsRElKFFxaKhHkrQ4fTUqJbyvJngRq0QHcUZTElpR5jpfRA2ZGJdDbhEmbNyJKT-Cy6DddbDh1IL0LLO496QS4EhisF9CokjCSqhLZ-Lttbde4S8BFdm07zjIfkKPLs5ZCpizD7JxLMs9/s400/Dec+2008+158.jpg" border="0" /></a> She looks like she's yelling at someone here. Probably me for taking these pictures.<br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9WP4vdzMmEvp99A7Ldtc0vc1T4SG7nmLwlRK1hAUxpQIuuINKmDjtwggK7cv4gr4ZcWNneu1M4SM-hUjLJhZm2oQSFLlYZXcaN9gCZBylrglDFcxbVm9-ixgaiUy9WtY9fDAN3BqTzZmn/s1600-h/Dec+2008+157.jpg"><img id="BLOGGER_PHOTO_ID_5285392238613484306" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9WP4vdzMmEvp99A7Ldtc0vc1T4SG7nmLwlRK1hAUxpQIuuINKmDjtwggK7cv4gr4ZcWNneu1M4SM-hUjLJhZm2oQSFLlYZXcaN9gCZBylrglDFcxbVm9-ixgaiUy9WtY9fDAN3BqTzZmn/s400/Dec+2008+157.jpg" border="0" /></a><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFyBVKK-CL0el2bCgBbH7QJwF_pE_vHrdLIbvS3ap870vB1SMsj1pY9DlzV9hpC0GbaSkOdiNFqv5ETbH9NgMwijOmJ6xd6OwHLJN9QAR9oBKVTdKREvm-NfrpUd32rk__YCQdmvbmIpU2/s1600-h/Dec+2008+150.jpg"><img id="BLOGGER_PHOTO_ID_5285392229666724754" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFyBVKK-CL0el2bCgBbH7QJwF_pE_vHrdLIbvS3ap870vB1SMsj1pY9DlzV9hpC0GbaSkOdiNFqv5ETbH9NgMwijOmJ6xd6OwHLJN9QAR9oBKVTdKREvm-NfrpUd32rk__YCQdmvbmIpU2/s400/Dec+2008+150.jpg" border="0" /></a><br /><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbm2x3Csja3YiBWg_6kMxGTKNOV5j0m89YIQEzEC96-pyaKzznGivj0KWzQ80o_S1ntWibmVdnW_8_2m3TmJCGEsXqaqLGqnu4TbEM7mIIhT1gljv_wMd4-kDpuOt7ImUB6AVMpagtzSpW/s1600-h/Dec+2008+143.jpg"><img id="BLOGGER_PHOTO_ID_5285392222507756738" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbm2x3Csja3YiBWg_6kMxGTKNOV5j0m89YIQEzEC96-pyaKzznGivj0KWzQ80o_S1ntWibmVdnW_8_2m3TmJCGEsXqaqLGqnu4TbEM7mIIhT1gljv_wMd4-kDpuOt7ImUB6AVMpagtzSpW/s400/Dec+2008+143.jpg" border="0" /></a><br /><br /><br /><br /><div><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSpqFyptj8zTk2fqGrwgRIy1pCGYYlGw8rYkF-5LUtdE8UqXwdXfgV2dPBHfOU7MZd1Ob4g5vMjFW2rbMNQ12pXJU1BbulYSd1L3Pm2uJctza-KFc0pERlQK4dBPj7jx34-KrCNZcji9eE/s1600-h/Dec+2008+141.jpg"><img id="BLOGGER_PHOTO_ID_5285392209610940786" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSpqFyptj8zTk2fqGrwgRIy1pCGYYlGw8rYkF-5LUtdE8UqXwdXfgV2dPBHfOU7MZd1Ob4g5vMjFW2rbMNQ12pXJU1BbulYSd1L3Pm2uJctza-KFc0pERlQK4dBPj7jx34-KrCNZcji9eE/s400/Dec+2008+141.jpg" border="0" /></a><br /><br /><div><div><div><div><div><div><br /><div>Just had to share these pics I took of Maddie on Christmas evening.</div></div></div></div></div></div></div></div></div></div></div></div></div></div>Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com4tag:blogger.com,1999:blog-3948861730085667550.post-81405600768637002802008-12-26T13:54:00.001-08:002008-12-26T14:04:25.415-08:00Happy Holidays!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQspD9tVp0cAgr4WvwVVcgpqjasEm_hovw77VquTwtbVZCK5R9kbbosrlS9hiy4Cp_EJUo_1Uz9F4g6V5C3du3CS_ofcGGr3Lbr-ordLs5OEaHeGlv93ubjXnymT6lLVFOaK0vn461ktOE/s1600-h/Dec+2008+028.jpg"><img id="BLOGGER_PHOTO_ID_5284221632211761074" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQspD9tVp0cAgr4WvwVVcgpqjasEm_hovw77VquTwtbVZCK5R9kbbosrlS9hiy4Cp_EJUo_1Uz9F4g6V5C3du3CS_ofcGGr3Lbr-ordLs5OEaHeGlv93ubjXnymT6lLVFOaK0vn461ktOE/s400/Dec+2008+028.jpg" border="0" /></a> Aren't they beautiful? Why is it everyone always gives Dave a look of pity for having 4 girls?:-) It was so nice having ALL of our girls at home for Christmas...FINALLY!!<br /><div></div>Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com2tag:blogger.com,1999:blog-3948861730085667550.post-11215702476030396572008-11-27T08:38:00.000-08:002008-11-27T09:10:20.714-08:00She's Here!!<div><div><div>Well, I'm a week late in getting this out, but I didn't get out of the hospital until Saturday and have been trying to recoup. Just like I've been telling people, this baby was like her two oldest sisters and didn't want to adhere to any C-section date...which was scheduled for December 2nd.<br />Madelyn Dee arrived on November 19th at 7:59 am. She weighed 7 lbs 8 oz (my biggest) and was 20 in. long (just like Sydney). <p align="left"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhTb6eR9wBKUBTn2hDSGgerMRi6TRi5HiqZZnChF1IWRc1EdmrdJtf60_50CxTr04kKT74dvnWEs1_PJr6cqxiRvN57rQxxXz7qeTIOgtzAYetxww_XMQHSOr5CeDgiKszYrwr0Rcm4mH9/s1600-h/Nov+2008+137.jpg"><img id="BLOGGER_PHOTO_ID_5273380975248169554" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 458px; CURSOR: hand; HEIGHT: 334px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhTb6eR9wBKUBTn2hDSGgerMRi6TRi5HiqZZnChF1IWRc1EdmrdJtf60_50CxTr04kKT74dvnWEs1_PJr6cqxiRvN57rQxxXz7qeTIOgtzAYetxww_XMQHSOr5CeDgiKszYrwr0Rcm4mH9/s400/Nov+2008+137.jpg" border="0" /></a></p><br /><br /><p align="left"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhTb6eR9wBKUBTn2hDSGgerMRi6TRi5HiqZZnChF1IWRc1EdmrdJtf60_50CxTr04kKT74dvnWEs1_PJr6cqxiRvN57rQxxXz7qeTIOgtzAYetxww_XMQHSOr5CeDgiKszYrwr0Rcm4mH9/s1600-h/Nov+2008+137.jpg"></a></p></div></div><div> </div><div> </div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix-L4F_arOiUYkTfdnN4Ls3Q2NtPdK-yXYOA-UoivV_EVCkXz8S6RZs64whDgPwHyt_YRFKCZVKIYwSKveY5ismaUrJxwTRgbN8uaOra9mHOjhuFsMdxa_nF_NBZGp4S4yQzHZ3DypttnN/s1600-h/Nov+2008+170.jpg"><img id="BLOGGER_PHOTO_ID_5273384105787323074" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix-L4F_arOiUYkTfdnN4Ls3Q2NtPdK-yXYOA-UoivV_EVCkXz8S6RZs64whDgPwHyt_YRFKCZVKIYwSKveY5ismaUrJxwTRgbN8uaOra9mHOjhuFsMdxa_nF_NBZGp4S4yQzHZ3DypttnN/s400/Nov+2008+170.jpg" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNadOkKjZEWXGpqkkAmUJ3HmngUOT36Vc2D6oquuYYrl_UtKGdSGOSqgrTV9jt2YrSwtiqLpWZ6uBUJXm-xqEauC-FM_IlSwjlN7v-LdWIMKVMgm9lyfEUm3lryTkI_0fSGFojcF0PiKF/s1600-h/Nov+2008+176.jpg"><img id="BLOGGER_PHOTO_ID_5273384113256606386" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 300px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNadOkKjZEWXGpqkkAmUJ3HmngUOT36Vc2D6oquuYYrl_UtKGdSGOSqgrTV9jt2YrSwtiqLpWZ6uBUJXm-xqEauC-FM_IlSwjlN7v-LdWIMKVMgm9lyfEUm3lryTkI_0fSGFojcF0PiKF/s400/Nov+2008+176.jpg" border="0" /></a><br /></div><div></div><div><br /><br /></div><div></div><div><br /><br /></div><p align="left"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhTb6eR9wBKUBTn2hDSGgerMRi6TRi5HiqZZnChF1IWRc1EdmrdJtf60_50CxTr04kKT74dvnWEs1_PJr6cqxiRvN57rQxxXz7qeTIOgtzAYetxww_XMQHSOr5CeDgiKszYrwr0Rcm4mH9/s1600-h/Nov+2008+137.jpg"></a> </p></div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div>Not to be outdone by her sisters' births (Sydney was breech, Reagan got cut on the face during the C-section, and Ellie and all her complications), Maddie had her own surprise for us. She decided to show up on Reagan's birthday!! Yes, our girls have their own way of trying to get attention. So Reagan had to open her presents up at the hospital. I really don't think she minded, but we'll see in a few years when it kicks in that she has to share her birthday with her sister. I'll write more later and throw in some pics of the girls with Maddie.</div>Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com2tag:blogger.com,1999:blog-3948861730085667550.post-83233306074875702312008-10-10T06:00:00.000-07:002008-10-10T06:22:34.252-07:00On Her Way!!So I realized it had been a while since my last update and I left everyone in limbo. Well, a week and a half ago, the dietician came and weighed Ellie. She had lost little weight, but she felt this was okay since Ellie had been gaining so much and had actually been getting too many calories with all the milk. She approved 2 more hours off the pump (11 total) and encouraged us to try 1/2 oz more of milk at each meal. Ellie did better than that! In fact, one of the days she had 12 oz!! This was a new record! Okay, I need to clarify a bit. She is not actually "drinking" it from a cup. She tends to like it thicker (I use a drink thickener to do this) and a lot of times I spoon feed it to her. Sometimes she lets me tip the cup in her mouth..but I figure, whatever we can do to get her off the pump. Well when the dietician came this week, she weighed Ellie and it was a 9 oz gain from the week before (21lbs 3oz)!! She was very happy with the progress. So happy that now she is only on the pump for 9 hours (that's sleeping hours only!) and what is in the pump is half formula and half water!! Wahooooo! She also said that Ellie is really close to being off the pump!!!!! I never thought she'd move this fast. She will check her again in 2 weeks. The next steps, in case you're wondering, would be to move to only water at night and then to completely off the pump. That's how close we are~!!!!! Can you tell how excited we are ? The girls are excited too because now they don't have to worry about tripping over pump cords.<br /><br />As if this weren't enough, she had another tooth break through...we are at 12 total now. It's hard to believe that 10 of those have come in since May. And....she said "ball" very clearly last week when early intervention was here and then I got her to say "bye"!! I have also moved her bed completely flat (I've been slowly moving it from an inclined position) and put crib bumpers around. This seems to be helping her with sleeping at night. I spoiled her 2 weeks ago by letting her sleep in bed with me and it's been hard keeping her in her crib every since. But she does like the bed flat now. It is easier for her to roll around, sit up and play in and she really likes to hold the edge, pull up and down and peek at who is on the other side. This is so much progress for her. I told Dave that I really believe she may be crawling or close to crawling by Christmas. She is already working her way all around the living room scooting and piveting on her bottom. It's hard for the girls to remember she can get into their stuff now.<br /><br />Finally, a quick reminder that the Buddy Walk is the 18th and there is still time to donate. We are so excited to finally participate this year. Especially since she was in the hospital during it last year.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com3tag:blogger.com,1999:blog-3948861730085667550.post-32915508483278145442008-09-25T10:15:00.000-07:002008-09-25T10:34:32.211-07:00We Need A New Goal For Buddy Walk!!Wow!! Thank you so much to all who responded so quickly and signed up for Ellie's team, made donations and/or passed the word along to friends and family. Thanks a bunch also to my sister Shelly for hosting a last minute garage sale to raise funds (she did practically everything...all I did was bring stuff over to sell). She set up a sign at the entrance letting everyone know what the funds from the sale would be used for and some people didn't even buy anything, but just gave donations. We made $350 to contribute to our team!! With that addition, our team reached the $1,000 goal in 5 days!! I'm setting a new goal, so keep passing the word. We have until <strong>October 11th</strong> to collect donations. You can also still register to be on Ellie's team, your t-shirt will just not have Ellie's Mission on the back, but we will know you're with us!!<br /><br />As for Ellie, she continues to be busy. She now has a total of 11 teeth! I believe 5 of those were just in the last few weeks. She has also figured out how to get into a sitting position from being on the floor. Unfortunately, it is the wrong way (she does the splitz, bad on her hips). We've been working on the correct way, and she is getting soooo much better at it. We've also gotten her Hip Helpers (they look like biker shorts that have been sewn together). She has to wear them twice a day for 30 minutes. She does not like them. They really make her work hard and don't allow her to be so flexible with her legs. It really seems to be helping her get stronger. <br />The big news: 2 weeks ago we were told we could take her off her tube for 9 hours straight a day!!! This has been so awesome!! It is so nice to pick her up and not worry about a tube. Unfortunately, the girls have forgotten to be as careful when she is hooked up, but I just keep reminding them. The other big news: She said "Shoes" and "Ball" (ball is not as clear, but is definitely what she means). I think Dave grinned from ear to ear when he heard her. Her signing is sporatic but she has made signs for milk, more and drink. If she wants to talk instead though, I am very okay with that!!Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com1tag:blogger.com,1999:blog-3948861730085667550.post-2346987081407464882008-09-15T13:25:00.000-07:002008-09-15T13:37:33.697-07:00A Subject Close To My Heart--Buddy Walk<div>This is a copy of an email I am sending out today. In case, I've missed your address, which is entirely possible, please take a moment to read it and/or share our website with others. THANK YOU!:</div><br /><div></div><br /><div>Dear family and friends,<br /><br />Many of you know what our daughter Ellie has been through in the past year and a half and many of you have helped us out in so many ways. To this we say Thank You so very much! What you may not know is that we found out that Ellie would be born with Down Syndrome about a month before she was born. At the time we received the diagnosis, we were given a packet of information from our doctor's office. We didn'<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK2Jr9Pknv10bLcMXkLJ6i6Xm3ThW1wH0nUh8ADNoYpDcGqQAwwLjqrgS54fyrKKDwWrhOd1ZHwL6WT_OJhCiO1kg5MJNxgnrO1JbcUE6RbQbTGmotFivAF-_x1eaEl_mabPLgKthGw3Ju/s1600-h/June-July+2008+203.jpg"><img id="BLOGGER_PHOTO_ID_5246349504297021810" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 285px" height="185" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK2Jr9Pknv10bLcMXkLJ6i6Xm3ThW1wH0nUh8ADNoYpDcGqQAwwLjqrgS54fyrKKDwWrhOd1ZHwL6WT_OJhCiO1kg5MJNxgnrO1JbcUE6RbQbTGmotFivAF-_x1eaEl_mabPLgKthGw3Ju/s400/June-July+2008+203.jpg" width="400" border="0" /></a>t know a lot about Down Syndrome at the time, so we read everything we were given. We sent in the reply card enclosed and the Kansas City Down Syndrome Guild sent us a huge package full of books, brochures, a DVD, and even some gifts along with a very nice letter letting us know that they were available when and if we needed them. We also received a call asking us if we would like support and information from another family in our area who had a child with Down Syndrome. At the time, we declined. Her medical issues and just the knowledge that she would have Down Syndrome were incredibly overwhelming. But, what we did do was read the info and books they sent us cover to cover. It was this information and one of these books that gave us the knowledge we needed to ask the right questions after Ellie was born. It was reading one of these books that led us to ask for the Echocardiogram that discovered the hole in her heart. I'm sure the hospital would have done this anyway, but in a situation where you feel completely powerless, it gave us a little bit of power. The doctors appreciated our newfound knowledge and we're sure this is why they were able to discuss Ellie's situation with us so candidly.</div><br /><div><br />The reason we're sharing this with you is because we are participating in the the Buddy Walk this year. This is the Kansas City Down Syndrome Guild's main fundraiser. The money donated is used to send out packets of information to doctor's offices like mine, to buy books like the one we received and send them in care packages to families who have just received the news that their child will be born/has been born with Down Syndrome. It is used for activities that allow families of children with Down Syndrome to interact and learn from each other and it is used to help families, whose child has to be hospitalized, offset some of their costs. And these are are only some of the ways in which we have been helped by the Guild. There are many more ways in which the money that is donated to them is used.</div><br /><div><br />Please consider visiting our Ellie's Mission team site at <a href="http://www.kcbuddywalk.org/">http://www.kcbuddywalk.org/</a> . If you would like, you can make a donation to the Kansas City Down Syndrome Guild from the site or you can join our team, help us to raise money and walk with us at Arrowhead Stadium on Saturday, October 18th. If you decide to join our team, please sign up by this Friday, September 19 so you can have our team name on your shirt!<br /><br />If you've gotten this far, thank you for taking the time to read about a small part of our journey no matter what you decide to do. Please feel free to pass this email along to any of your family and friends.<br /><br />David and Natalie Wonnell</div>Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com0tag:blogger.com,1999:blog-3948861730085667550.post-57178478960135761142008-09-04T11:19:00.000-07:002008-09-10T16:00:32.914-07:00UpdateI didn't mean to stay away so long. So many things happening around here. Sydney and Reagan started school. Sydney loves 1st grade. I was worried about how she would handle a full day, but she actually adjusted really well. Her favorite thing though is taking the bus to Dave's school after her school is out and playing with some of her new friends until his workday is done. Dave says she has so much fun, he has to really talk her into getting into the car to come home. I miss not getting to see her so much, but I know she is having a ball. Oh, and she was chosen by her teacher to be this month's "High Five Club" student (has displayed the characteristics of trustworthiness, caring, citizenship, responsibility and respect). Her picture will be hanging on a bulletin board in the lunch room. We are so proud of her!! <div><img id="BLOGGER_PHOTO_ID_5244381746480980274" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIm9OyD8dd91CoaAID9oxhueLuyWeVjN_cNDh2RJzCQ8RrqPm9HDyYuE7JY5-1EnkbfErGrPJS1bVZksDuBkU5jit0201NiDCYC1oIJdyv8A5i9PZmkXpPq8s0maL6ki3cSNH9_RzcdIiK/s400/June-July+2008+065.jpg" border="0" /><br /><br /><br /><div>Reagan is doing well too. She likes getting to leave with Sydney and Dave in the morning. They drive to Dave's school then a bus takes them to the elementary school. We hear from her teachers that she is very good in school, has great manners and is kind of quiet (yes, you heard that one correctly...a surprise to us). The only difference that I have noticed in her lately is that she is very clingly. She tells me a lot that she misses me when she is in school (she goes M-F in the morning).</div><br /><br /><p>The newest girl is doing fine. I had another sonogram yesterday and there is no sign of impending labor. Docs thought all looked well. She is looking healthy, weighs 2lbs, 8 oz (I think) and her growth shows her 5 days ahead of schedule. She does appear to camera shy. They tried to give me a 3-D shot of her face put she wouldn't take her arms down. As for names, we still have no clue.</p><br /><br /><div>As for Ellie, she has been continuing with her growth spurt. She now has a total of 9 teeth! Yes, they have been coming in like crazy. 2 just in the last week and 2 more almost ready to break through. She is pivoting all over when she is sitting (moving herself in circles) to reach what she wants. We have been practicing getting her on her knees and standing. It's hard work for her, but we've been seeing improvement. She waves hi and bye now (though not always right away) and loves pat-a-cake. She has figured out how to do the "roll it up" part with her hands and has gotten better with the "throw it in the pan" part (throwing her hands up in the air--this is hard for her). Just Friday, she surprised me with getting into sitting position on her own. I'm still not sure how she did it. She was laying down when I went into the kitchen, then I heard her fuss, came out and she was sitting up happy as a lark. She's only done it 2 other times but I'm sure she'll have it down soon. We've been working on it for weeks. She desperately wants to crawl to things on the floor but has not figured out how to coordinate her arms and her knees yet. Exciting news on the eating front is that we are working with a dietician now and I have her eating orally 5 times a day (3 meals, 2 snacks) and off her tube for 5 hours a day). We do a lot of counting calories...she needs around 150 per meal and 100 per snack. We see her again tomorrow and I hope we have worked hard enough to be able to double her time off the tube (the next step). This would basically have her off most of the daytime. Oh, and yesterday I got her to drink 8 oz of milk throughout the day (very thick and spoonfed sometimes)!!!! This is a major record!! If you remember, this is the part we struggle with; eating is no problem.</div><br /><br /><div></div><img id="BLOGGER_PHOTO_ID_5244530694887921490" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2h4pecoHqE1ZPvaqb0G6Ld-oT4xj22CT7pKYynyKEfO4D_G2C_dwnMp8K-3TD5a4mSf88HW-tQy_XxJuZ5QfX50fEEyfmhWNG7seNXX9sF-5SNdrT9TSTu3t48ESPm4ZWa6O5VKtpYy11/s400/June-July+2008+088.jpg" border="0" /><br />Isn't this pic awesome?!! You can't even see Dave behind her holding her up.<br /><div>And great news, we are now part of the high speed internet world, so I'm attempting to add new pics to the site.</div></div>Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com2tag:blogger.com,1999:blog-3948861730085667550.post-2364687173279106622008-08-05T13:17:00.001-07:002008-08-07T10:01:55.898-07:00It's A Girl!!!...Yes, you are reading that correctly. No, we are not playing any jokes. It really is a girl. Yes, they are absolutely sure, this is the 4th time we've been through this and we are pros at spotting the 3 lines that tell us it is a girl. Sorry, to make you all wait so long. Had to get used to the news ourselves. Sydney was/is disappointed. She really wanted a baby brother. I'm sure it will pass. Reagan said, "It's a girl!" with a big grin on her face. When the sonographer asked us if we could tell what it was (took her 5 minutes to get a good look....this baby is active), Dave and I immediately said a girl...the lines were pretty clear. Then we started laughing. Ellie was the only sibling in the room with us and she started cheering and clapping. Apparently, she wanted a little sister. Dave and I were so relieved to see a stomach, a 4-chamber heart pumping blood and every other thing that indicated that this is indeed a healthy baby. Yeah!!!!! And did I mention that this kid can move? She didn't sit still for any good pictures.<br /><br />Monday my doctor's office called to let me know they were concerned about something they saw on the sonogram. Yes, my heart rate went way up...been there, done that, not anxious to do it again! They scheduled an appointment with a specialist to check my cervix (same one I saw with Ellie). Long story short: They were concerned that I might not be able to hold the baby well and go into premature labor. This would mean bedrest or possibly surgery to help keep the baby in. They needed a second opinion. Soooo...Tuesday I had another sonogram and am relieved to share that everything looks fine. My cervix looks good and I'm showing no signs of early labor. The doctor did question me on what my normal routine is and asked me to tone it down a bit (no picking up Reagan, not a lot of stairs, Dave gets to vacuum, be careful picking up Ellie) and wants to see me in 4 weeks, but he says it's all precautionary. So for those few who knew the situation, thank you for the prayers. For those who didn't, we really did not want you to worry. Oh, and I did have them double check the gender, you know, for those who really can't believe it's a girl.....and it's STILL a girl!:-)Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com6tag:blogger.com,1999:blog-3948861730085667550.post-28025484497645141792008-07-31T06:38:00.000-07:002008-07-31T07:07:02.700-07:00Are We Crazy?.....Okay, for those of you who have not seen me in a couple months or not at all, I am very much delayed in sharing our good news. We are having another baby! In fact, I'm 5 months along and the baby is due December 8th. ARE we crazy???? Absolutely! I wanted to share the news earlier, but wanted to wait until the preliminary testing was complete...then after that, it was pure procrastination:) I had a sonogram and blood test at 11 weeks, then another blood test at 15 weeks (I'm 21 weeks right now). The final results showed a low risk for Down Syndrome, Trisomy 18 (mostly fatal to babies) and neuro tube defects (such as Spina Bifida) despite my age and having Ellie. It was a relief, but Dave and I won't be truely relieved until we see a stomach and four chamber heart on the sonogram today. Yes, we are having the sonogram today and will find out the gender of the baby. But, come on, we all know it's going to be another girl...after all, Dave "only makes girls." These are his words, not mine. As long as it's healthy, I don't care what it is. So, if you've gotten over the initial shock of the above, here's what else is going on:<br /><br />Sydney scored two goals during summer soccer. We were so proud of her. She played hard this summer. She has also picked up a little habit that I remember doing when I was little. She likes to use big words. It started with "actually", then it was either (but she mostly used it wrong and the word she really needed was even), then I heard annoying (when she actually meant ignoring in the sentence) and the lastest is part of a whole sentence...well, isn't that convenient. That one just made me laugh. She'll have a good vocab though since we are teaching her the definitions too.<br />Reagan is unofficially potty-trained. She stays dry whenever we go places and during our whole vacation to Minnesota, but tends to have accidents occassionally at home. My take on it is that it's plain laziness at home. Part of her "I'll do whatever I want" personality. She tried really hard at soccer this summer. We didn't expect a whole lot, but were happy with her stamina. She played really hard, stayed mostly focused and ran her heart out. What more can you ask of a 3 1/2 year old. She had lots of fun though and they let us have Sydney and Reagan get their soccer pic together. Can't wait to see it.<br />Ellie has continued on her growth spurt. I forgot to write in the last entry that she had a new tooth coming in ( 2 yr molar) and now she has 2 more (another molar and a front tooth). A total 5 so far and at least 2 more pushing through. I know it seems odd that she's getting these molars already, but that's just part of Down Syndrome. The teeth don't come in the "usual" order (of course, Sydney's didn't start out that way either). So we are excited to see the new things she will be able to eat soon. Last night, we had breakfast for dinner and she had a ball eating pancakes with syrup and sausage. She is also picking up green beans and eating them on her own. The biggest break-through came on Monday when Early Intervention brought out a new "cup" to try. Actually it is a perm bottle with rubber straw taped to it. The drink goes inside, and as you squeeze the bottle, the drink comes up the straw. Ellie did awesome!!! She started sucking on the straw!!! Not all the drink stayed in her mouth but she got better as she went along. We've been practicing for several days now and it does seem to be helping a lot.<br /><br />There's more to share, but I need to get the kids around so I can enroll them in school. I'll share more later!Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com2tag:blogger.com,1999:blog-3948861730085667550.post-76986025697344431812008-06-30T15:58:00.000-07:002008-06-30T16:37:57.743-07:00No Grass Growing Here....When I talked with one of our neighbors a few weeks ago, I mentioned all our activities and he said, "You're not letting the grass grow under your feet". That pretty much sums up the past month. When Sydney got out of school in May, we hit the ground running. Reagan had 2 weeks of swim lessons (which would have been nicer for her if it hadn't been cool and stormy on many of the days), Sydney had 2 weeks of summer school (she had a ball...it was a buggy theme), I signed the girls up for dance in separate classes because of age (Reagan's was a beginner dance, Sydney's was Tap and Jazz) and just as dance finished, summer soccer began. They've already had 2 games and there are 3 left. Reagan loves it, but is upset that the other kids won't let her win. She's kicked the ball a few times, but her little feet just don't let her keep up with the others. Sydney got her first goal last Saturday. You should have seen her face, she was soooo excited. We've also had some firsts: <br />Reagan had her first visit to the dentist. When the hygienist started to floss her teeth, she said, "Here I show you how to do it." Of course Dave and I corrected her quickly. Sydney had her visit at the same time and you'd have thought the kid was going to an amusement park. She loves to go to the dentist. I guess this is what happens when you grow up sitting on your mom's lap while the orthodontist works on her braces....no fear of the dentist. She was devastated (and crying) one night after looking at her teeth. She was sure she had a cavity. Dave and I looked and quickly corrected her...it was the vitamin she had just eaten.<br /><br />Reagan is out of her crib and sleeping in a toddler bed. I know, I know, she's 3 1/2. She was just so content in the crib and honestly, I was dreading it. She's so strong-willed and I just knew she would be in and out of the bed....and she has, but it hasn't been as bad as I feared.<br /><br />Ellie sat in a restaurant high chair for the first time and did just fine. It was even one that had no tray and I wasn't able to push her up to the table either (to use her hands for support). But she did awesome.<br /><br />Ellie also has figured out how to turn herself over from her tummy to her back. She had done it accidently a few times, but now intentionally does it. Every once in a while, she gets stuck, but I just lay her arm to her side and she flips right over. She has also mustered enough arm strength to push herself straight up when she is laying on her tummy (not just pushing up on the elbows). A few more things...she plays a little bit of pat-a-cake (clapping hands) on her own once I get her started and last night Dave and I clearly her say "more".....meaning we heard the "mmmo" and it ended with a definite "rrr" sound...when I was feeding her spaghetti (ground up). Oh, and she has slurped her drink a couple of times rather than mean just pouring it into her mouth. She has definitely been a busy body.<br /><br />She had her other swallow study a few weeks ago, but there really wasn't anything significant to report. OT thought her eating was awesome, so we didn't even test it and instead concentrated on the drinking. Unfortunately, when we had her Radiology, she got ticked off about being strapped down and was not as good of an eater/drinker as normal. They did go all the way down to water thin but said she aspirated a little. They really had to look back at the films to see it, and she was screaming at the time. So we're thinking, she may have done fine if she wasn't upset. What we really got out of it though was that we just need to concentrate on her swallowing getting faster and being able to drink more than what she is now no matter what the thickness is.<br /><br />As for Dave, as soon as he was done working at the high school for the summer, he came home and started framing our basement. He really accomplished a lot in a little over a week. Then he came down with a REALLY bad case of strep throat. Once he finally got over that this weekend, on the day he was feeling his best, he pulled a muscle in his back moving something. So, now he's recovering from that. It's always something around here. Told you we've been busy. I'll update more later.Nataliehttp://www.blogger.com/profile/08312211034785611221noreply@blogger.com1