tag:blogger.com,1999:blog-59216265501496908992024-02-18T22:57:25.363-05:00Mugga BuggaA celebration of all that is good in life despite dealing with a terrible illness, Cystic Fibrosis.
When Seamus first started talking, he would say "Mugga Bugga" when he was having fun. This blog is a record of a childhood filled with fun.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.comBlogger189125tag:blogger.com,1999:blog-5921626550149690899.post-48880794611603617102015-06-04T10:45:00.001-04:002015-06-04T10:45:14.146-04:00LiverversaryI can't believe I haven't posted since the transplant! On May 13, 2014 at 8:30 PM, as I was making t-shirts for the annual CF Great Strides Walk and Seamus was taking a bath, we got <i>the call</i>.<br />
<br />
"Julie, we think we have a liver for Seamus. Can you get to Philadelphia right now?"<br />
<br />
Those words changed our life forever. We all jumped in the car and took off, leaving half of our pre-packed luggage behind. The 3 hour ride to Philadelphia was the longest trip of my life.<br />
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They had told us another child waiting for a transplant was also called and once they examined the liver, they would determine whether Seamus or the other child was the best match. I know many people waiting for organs go through many "dry-runs" before actually having their transplant so I was trying to not get too excited, but it was nearly impossible. At 4:30 AM, my cell rang and I heard "It's a go!"<br />
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Within an hour, Seamus was wheeled away into the OR with a smile on his face and our family went to the waiting room for a very long wait. Through the 8 hour period, we got many updates that things were going well and finally the surgeon came out to tell us it was done. She said they were surprised at how awful his old liver looked because he always seemed in good spirits and didn't complain. I told her we've been hearing that from doctors his whole life. She said he was very lucky to get the new liver when he did.<br />
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His recovery went well, with a few bumps along the way, mainly with his GI system getting used to the new liver but he quickly adjusted and after two weeks in the hospital, we went to stay at the Gift of Life House for another week to be close for follow-up appointments. On June 3rd, 2014, we headed home.<br />
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This past year has been great. Seamus' liver has been healthy and he is back to being an active kid. He's gained more than 13 pounds and has gotten 3 inches taller. He hardly missed any school this year and he made the Honor Roll all semesters.<br />
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On his first year liverversary, I wrote the letter below to his donor's family thanking them for this wonderful gift. The Gift of Life House will send it to them and I'm hoping to hear back.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>Dear Donor Family-<o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<i>I am the mother of a wonderful nine year old boy who is
alive today because of the precious gift that he received from your loved one.
I will never be able to express my gratitude and thankfulness enough to your
family for such a selfless act in your time of grief. I think about your loved
one and your family every day and I am so sorry for your loss.<o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<i>My son, Seamus, received his new liver after waiting ten
months on the transplant list. His health had continued to decline until he was
very sick and unable to attend school full-time. He wasn’t able to play with
his little brother or walk very far without the aid of a wheel chair because he
was so exhausted and in pain. <o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<i>Originally, it was planned that I would donate part of my
liver to him but because of an anatomical complication, I was unable to be the
donor. This was a huge disappointment for our family. After that, he would ask
me every day if that would be the day he would get “the call” and as time went
on, we were all getting discouraged and were afraid he wouldn’t get it in time.
<o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<i>I am so happy to say that now he is an active little boy who
runs around and loves to ride his bike and scooter. He takes karate class and is back in school
full-time in the 4<sup>th</sup> grade. His liver is functioning extremely well
and the doctors couldn’t be happier with his progress. <o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<i>Seamus plans on being a pediatric anesthesiologist when he
grows up and I know he will accomplish his dream. That wouldn’t be possible
without the enormous gift he received last May. I do not have the words to
fully convey how much it means to my husband and me to see him have that
chance. <o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<i>If you would like to contact our family and find out more
about Seamus, we would love to talk with you. I know it may be difficult for
you right now, so if you are not comfortable yet, I understand. Whenever you
are able, feel free to contact us. <o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<i>With sincere gratitude-<o:p></o:p></i></div>
<br />
<div class="MsoNormal">
<i>Julie</i><o:p></o:p></div>
Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com1tag:blogger.com,1999:blog-5921626550149690899.post-40231688894566187452014-02-25T17:30:00.000-05:002014-02-25T17:30:28.663-05:00Time Flies<span style="font-family: inherit;">Where to begin? Well, we made it to Denver and saw Dr N. He was 100% certain that Seamus does need a transplant and also some very complicated motility testing to determine once and for all what the hell is going on with his GI tract. So we came home very excited and thought things were going to happen! </span><br />
<span style="font-family: inherit;"><br /></span>
Well, it's 8 months later, Seamus is still waiting for a new liver and will finally have the week-long motility testing done here in DC in three weeks. These things take a lot more time than we anticipated. We decided we wanted to increase Seamus' chances of getting a liver so we took a trip to Philadelphia and got him evaluated at Children's Hospital of Philadelphia (CHOP). We loved their program and felt very confident with the doctors. We also met with the transplant team at Hopkins and decided to list at both places. Originally, the plan was for me to be a living donor. I went through all the evaluations and tests and Hopkins thought I looked really good. I just needed to lose a few pounds. CHOP had other ideas. They looked at my imaging and thought I had some anatomical issues that would make the surgery too risky for both Seamus and me. Because CHOP has much more experience with pediatric transplants, we felt we couldn't ignore their advice so we discarded the living donor plan.<br />
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In the meantime, Seamus was working with his therapist trying to get used to the idea of transplant. Initially the whole thing freaked him out to the point of refusing to talk about it. The only thing that made it a little easier was knowing he was going to get part of Mommy's liver. When that fell through, we were really worried. Thank God, his therapist totally gets him and has worked with him so well that now he is completely on board. He understands his liver will come from someone who "didn't make it". At this point, he talks of nothing but his transplant and is getting very frustrated that the call won't come.<br />
<br />
So over the 8 months, Seamus' condition has quickly deteriorated. He continues to go to school but is having a very difficult time because of fatigue, nausea and vomiting, and bleeding issues. He has also developed hepatic encephalopothy which causes confusion, poor memory and difficulties with motor skills like handwriting. It's been a definite struggle working with the school to understand his issues are medical and not behavioral. His teachers seem to think of him as a nuisance. We are working on pulling him from school part time and having a home/hospital teacher come to the house to work with him on the off days.<br />
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He also continues to have current hospitalizations due to his lowered immune system and frequent GI bleeds. His portal hypertension is getting worse and his liver and spleen have gotten so big, he looks like he's 8 months pregnant.<br />
<br />
The plus side of all this is he has moved up the transplant list a lot. When he was first listed in August, his PELD (Pediatric End-stage Liver Disease) score was actually -6. That's because the score only takes into account a few items, all of which Seamus liver was doing in a borderline okay way. After writing an exception letter based on his other health and deteriorating quality of life issues, CHOP got him up to 28 points and Hopkins got him to 25. They are both in the process of writing new letters asking for 30 -35. That's a really high number and we expect to receive a call very soon if the letters are accepted by the national board.<br />
<br />
So right now, we are in a holding pattern. We don't make any plans because we never know what is going to happen next. Seamus continues to fight and lead as normal a life as possible. Hopefully, it won't be another 8 months before I update this with news he got his new liver!Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com2tag:blogger.com,1999:blog-5921626550149690899.post-40011103826676663842013-06-04T11:53:00.000-04:002013-06-04T11:53:20.018-04:00ProgressionLet's start with my progression. BMI is now 31.9. It's coming down slowly but surely and with the last few months we've had, I'm not going to beat myself up about it. I've lost 17 pounds total.<br />
<br />
In April and early May, James spent 11 days in the hospital with a terrible lung infection. It caused empyema which is a build of infected fluid in and around the lung which caused it to collapse. He thought he had bruised or broken a rib and didn't get it looked at right away. It had progressed very far by the time he got to the hospital and he needed surgery to clear out all the pus from his chest cavity. He is finally feeling better now.<br />
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Not to be outdone by his father, Seamus had to make a hospital appearance as well. Seamus had been having a hard time with his nightly feeds for weeks and on May 19th he vomited again but this time there was a fair amount of blood. I contacted his GI doc who said he should get an endoscopy soon to see if he had more varices that needed banding but it wasn't an emergency. The next day he went to school and vomited again with a lot more blood. We headed straight to the ER.<br />
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He was admitted and an endoscopy was done the next day. They kept telling us they were sure it was just a tear in his esphogus from all the vomiting and if he had more varices, he wouldn't be acting so happy. I told them "You don't know Seamus".<br />
<br />
After the procedure, Dr K asked us to talk in another room which is never a good sign. Usually the docs talk to the parents in the waiting room right in front of everybody. He told us Seamus had two grade 3 varices which they banded and another grade 2. Grade 3 are very serious. It means the cirrhosis has progressed and the portal hypertension has gotten worse causing the pressure to build up. The blood vessels were so big they nearly filled up the whole esphophagus. <br />
<br />
While he was under, they changed his feeding tube from a g-tube that goes into his stomach to a g-j tube so the feeds could bypass the stomach and go directly into the intestines. This is to help his nutrition level because currently he is severely malnourished, partly because of his cirrhosis and partly because with his chronic constipation, food is not being absorbed. Immediately after the surgery, he vomited and dislodged the new g-j tube so it was unusable.<br />
<br />
Two days later, they put him under again to replace the g-j tube and things went fine until a few hours later when he started feeling ill and spiked a fever of 105. They started him immediately on antibiotics which was good because he ended up having sepsis. During the procedure with all the manipulation of his gut, bacteria crossed over into his blood causing an infection. Sepsis is very dangerous, especially in people who are weak and have low immune systems. They, and we, were very worried about him.<br />
<br />
During that time, we were in discussion with his doctors about how to proceed with his care. At this point, he has them perplexed. He was only diagnosed with liver disease a year and a half ago and it's progressed faster than anyone could imagine. It's definitely time to start talking about transplant. We saw the medical director of the CFF in clinic a month ago and he told us we should probably talk with Dr Michael Narcowicz in Denver because he is the top GI/liver doctor in the CFworld. We brought this up to Dr K after the procedure and he agreed it would be a good idea. Besides just discussing tranplant options, he would like Dr N's advice on improving Seamus' nutrition (which is necessary for Seamus to recover from a transplant) and any other ideas on handing his chronic constipation. And on top of everything else, we can't forget about his lungs. Although his lung function is still very good, his x-rays do show CF lung progression.<br />
<br />
So that's where things stand. He is now doing 18 hour feeds everyday as well as 1.5 hour of medicines through his tube so he is basically constantly attached to his pump. He is in good spirits although he has "the worries" often and is seeing a psychologist to help him feel better. We are all looking forward to going to Denver next week but I am very nervous because I think our life may be changed completely after meeting with Dr Narcowicz. I'm trying not to think about or make any plans for the future because things may all change.<br />
<br />
Our wonderful friends set up a fundraising site to help us with the travel and medical costs and it raised $3000 in just a few days. I can't thank them enough, that money will help us out tremendously. <br />
<br />
Here's a cute video of the kids in the sprinkler this weeked. After I stopped taping, Mackey really got into it and we couldn't pull him away.S<a href="http://www.youtube.com/watch?v=eCt62rkj73w">prinkler fun!</a><br />
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I'll post again after we go to Denver.<br />
Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com7tag:blogger.com,1999:blog-5921626550149690899.post-63225503874575508782013-03-05T10:20:00.001-05:002013-03-05T10:20:56.942-05:00UpdateSo let's get it out of the way... After realizing on-line Weight Watchers just wasn't going to cut it for me, I joined Jenny Craig. My life is so crazy right now, I really need something very structured so I don't have to make any more decisions than I already do. After one week, I lost 3.6 pounds. I had lost a few before so total loss is 7.3. Current BMI - 33.7.<br />
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Mackey had his second birthday a few weeks ago. The poor guy really gets the short end of the stick. It was a low key event at our house but he had a big celebration at daycare. He was thrilled to get presents so I don't think he minded not having a party. I will write a post strictly about Mackey soon. He is growing up so fast and I want to make sure I record some of the wonderful things he does before I forget.<br />
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Some of Seamus' symptoms seem to be changing so we spent 7 hours at CF and GI clinic on Friday and got x-rays and an ultrasound done. The concern was he might be developing ascites which is fluid build-up in the abdomen because the pressure has increased so much in the liver. The doc called us Sunday night, which is usually not a good thing, to tell us there was no sign of fluid but he has lots of trapped gas and they can't figure out why. He had some stool but isn't obstructed. He constantly looks like an 8th month pregnant woman. We also got definitive proof of the cirrhosis which up to this point they had assumed but hadn't proven. This doctor has only been following Seamus for about a year and I think he's finally starting to understand the uniqueness of the situation. He admitted that Seamus is "a mystery" and his liver (and GI) disease is not following the path of most CF patients. We had another long discussion about transplant on Friday and he still believes Seamus isn't ready but we are concerned about waiting too long because he could become too sick to be eligible.<br />
<br />
The best part of the weekend was meeting with the Make-A-Wish volunteers. They had lots of questions for Seamus about his likes and interests and really listened to his request. He has a very specific request so we are hoping they are able to do it. He makes to go to the Activision offices where they make the Skylanders video game and create his own character called Man-atee. It's half man, half manatee. The face will be his face. He's come up with all the powers he has and whole story line. So hopefully, he could actually work with the designers to create it and incorporate it into the game, at least a version just for hem. My biggest concern is they wouldn't fully understand what he wanted and would just send us out to meet with the designers who would give us a tour and just show him how they work. I think he would be very upset if we went all the way there but he couldn't make Man-atee but it may be too much work for them.<br />
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He has a second wish, just in case, which is going to the Disney resort in Hawaii. Obviously, James and I wouldn't mind if that wish was granted but he really has his heart set on the first one so I hope they can do it or at least some comparable version of it.<br />
<br />
So we're still waiting for culture results and more liver blood work to come back but currently Seamus is feeling good which is the most we can ask for. I'm hoping we get that huge snowstorm everyone is talking about so we can all stay home together and snuggle.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com1tag:blogger.com,1999:blog-5921626550149690899.post-77746731074872428122013-02-08T11:03:00.000-05:002013-02-08T11:03:37.505-05:00Weekly update 2/8/13Okay, this week I did well with eating healthy and went to the gym or did something at home every day. I lost 1.2 pounds which isn't a lot but I had lost 4.2 pounds before my last post so overall I'm down 5.5 pounds so I feel good.<br />
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BMI 34.1Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com1tag:blogger.com,1999:blog-5921626550149690899.post-53714266936725892132013-02-01T10:31:00.000-05:002013-02-01T10:31:55.171-05:00Weighty issuesI have always been overweight and like most overweight people, I've tried scores of different diets, some more successful than others. I've lost a few pounds and inevitably, gain it back over time, especially after having two kids. I know the statistics, how I'll be healthier and live longer if I lose weight, but of course, I think nothing will <em>really</em> happen to me. For the first time, I no longer have an option of taking my weight lightly (pun intended).<br />
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Yesterday, Seamus had a follow-up visit with his liver doctor. We always dance around the topic of transplant at every visit. His opinion is some day Seamus might need one but as long as the liver is still functioning and his lung function does not seem to be compromised by the ever-increasing size of his liver and spleen, then he is not ready. His lung function has actually increased lately due to three months of inhaled antiobiotics but his liver lab work is always borderline okay, some times just under the acceptable numbers and sometimes just over. Every time he gets sick, like the flu-like virus that landed him in the hospital last week, his liver has a very difficult time handling it and bouncing back. So basically we do not know if, or when, the transplant talk will change.<br />
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That's where my weight issue comes in. I am the same blood type as Seamus but James is not. That means that I am a candidate to be a living donor for Seamus and I always assumed that would be no problem. Yesterday I found out that one of the biggest donor requirements is weight and I am too fat. It never really occurred to me that the fat is not just hanging off the outside of your body but your organs actually get a layer of fat as well and in order to have a healthy liver, your BMI should be around 23-25. That means I would have to lose more than 45 pounds to be an acceptable donor.<br />
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Since his liver could take a turn for the worse very quickly, I really need to be ready at any time. I could not lose 45 pounds immediately if he needs a new liver quickly. He could be listed for a cadaver liver but there is a shortage of organs and you never know the outcome of that.<br />
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So I have to take this weight loss thing seriously, extremely seriously, for the first time in my life. It's not a matter of just looking good in my clothes but it could literally save my son's life. I am going to post my progress here for everyone to see. Maybe that will shame me into keeping on track. I could use your support and advice.<br />
<br />
2/1/13 - BMI 34.3Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com6tag:blogger.com,1999:blog-5921626550149690899.post-78537023285142439892013-01-11T22:46:00.000-05:002013-01-11T22:46:51.649-05:00Catching UpSo the last two years in a nutshell:<br />
<br />
Mackey is almost two and is totally awesome; crazy, and defiant, and full of piss and vinegar. On days when he's throwing temper tantrums and saying nothing but "No, No, No", I may not think he's exactly awesome but to hang with this family you have to be tough and not take anyone's shit. I think he's ready for the challenge.<br />
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I am so glad we made the choice we did. Seamus is such a good big brother and the love they share is so special. Mackey absolutely adores his big brother, Bubba, and tries to emulate him in every way. He loves to sneak into the medicine drawer and grab empty syringes and "take his medicine" and we've caught him on a few occasions puffing on dirty nebulizer cups. He is completely obsessed with Dora the Explorer and does a mean Dora dance. Drawing is his other passion, much like his brother.<br />
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Mackey spent the first year at home being taken care of by Ga, my mom, who lives with us. After we caught him standing inside the dishwasher a few times and doing laps around the house, we realized he was too much for her to handle. He now goes to daycare and is doing great. His caregivers speak Spanish to him most of the time and he's picked up a lot. When he first started becoming vocal, we thought he was speaking lots of gibberish but then we realized he was speaking Spanish!<br />
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Seamus is doing well at his new school. He attends a performing arts school and has drama, art, music, or dance every day. Last year, he skipped a grade so he's now in the second grade. The only downsize is the large class size but that's the same in any public school. The nurse there is great and treats him like her own.<br />
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His health has been a concern. He has been hospitalized quite a few times in the last two years (now up to 33 admissions.) Some were for lung exacerbations but most were for GI or liver issues. He was diagnosed with CF liver disease in December 2011 and it has progressed much faster than anyone expected. His liver and spleen have become very enlarged and are in danger of rupturing if he accidentally falls or gets hit. He is not supposed to do any contact sports but he is still allowed to take karate for now. He loves it and is up to a yellow belt but he won't be able to continue much further because he can't spar.<br />
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He has cirrhosis and portal hypertension which means his liver has a lot of scar tissue that doesn't allow the blood to flow through. Instead the blood flows back into the stomach and esophagus and the pressure builds up so the blood vessels can burst at any time. He has had some bleeding so they went in and did a banding procedure to cut off the affected blood vessels. Normally, after a few weeks the band sloughs off and heals but in his case it didn't heal and instead formed an ulcer. One night, he woke up vomiting about two cups of blood from the ulcer and had to be rushed to the hospital. It eventually healed but the concern is the next time he needs to be banded, which is definitely a "when" not an "if", it could happen again.<br />
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He's starting to question things and some stuff does seem to bother him, but overall he still has a positive outlook. He is starting to have some trouble concentrating in school. We don't know if that's because the work is getting harder, if it's related to the liver disease, or if he's having sleep issues which are common to CF. He is going in for a sleep study soon. <br />
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Tonight, bedtime was a circus and James said something about how we aren't a "normal" family. Seamus asked "Is that because of my CF?" That's the first time he ever said anything like that. We told him of course that had nothing to do with it. There's really no such thing as "normal" and if there was, what fun would that be?Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com1tag:blogger.com,1999:blog-5921626550149690899.post-77096207641055944522013-01-10T15:30:00.000-05:002013-01-10T15:30:35.930-05:00Still HereIt's been two years but I'm still here. Here's some photos from our trip to Florida last Spring.
<a href="<object width="425" height="425" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab" classid="clsid:d27cdb6e-ae6d-11cf-96b8-444553540000"><param name="movie" value="http://images-community.shutterfly.com/flashapps/slideshow/slideshow-ui.swf"/><param name="flashvars" value="configXMLURL=http://images-community.shutterfly.com/flashapps/slideshow/config/config-share.xml&slideshowModuleURL=http://images-community.shutterfly.com/flashapps/slideshow/slideshow-module.swf&projectGUID=0Cat2jFwxYtWc0&swfName=slideshowFlashContent&showReplay=true"/><param name="menu" value="false"/><param name="quality" value="best"/><param name="wmode" value="transparent"/><param name="allowScriptAccess" value="always"/><param name="allowFullScreen" value="true"/><embed width="425" height="425" align="middle" pluginspage="http://www.macromedia.com/go/getflashplayer" type="application/x-shockwave-flash" name="wrapper" quality="best" menu="false" allowfullscreen="true" allowScriptAccess="always" flashvars="configXMLURL=http://images-community.shutterfly.com/flashapps/slideshow/config/config-share.xml&slideshowModuleURL=http://images-community.shutterfly.com/flashapps/slideshow/slideshow-module.swf&projectGUID=0Cat2jFwxYtWc0&swfName=slideshowFlashContent&showReplay=true" src="http://images-community.shutterfly.com/flashapps/slideshow/slideshow-ui.swf"></embed></object><p style="width:425px;margin-top:0;text-align:center;"><a href="http://share.shutterfly.com/action/welcome?sid=0Cat2jFwxYtXMg&cid=SFLYOCWIDGET&eid=118">Click here to view this photo book larger</a><div style="margin-top: 10px; width: 425px; text-align: center;">Photo Book Tip: Create an adventurous <a href="http://www.shutterfly.com/photo-books" style="color: #6666cc;">travel photo album</a> at Shutterfly.com.</div></p>"></a>Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com1tag:blogger.com,1999:blog-5921626550149690899.post-81939215306352043422011-02-23T13:49:00.006-05:002011-02-23T15:11:14.578-05:00Surprise!It's pretty obvious I'm not very good at keeping up with this blog. When I first started, my intentions were to write about the happy times of Seamus' life but this past year has been a pretty rough one and often I found the only things I had to write about were not very happy. Don't get me wrong, even through all the difficult times, there are always moments of joyfulness and fun but sometimes just making it through the day is so exhausting, this blog is the last thing on my mind.<br /><br />But now I can truly say I have something happy to write about. Cormac Richard Coleman has arrived! In true family fashion, it was not in the easiest manner. I think our family motto should be "If it can done in a more difficult way, we will find it." <br /><br />I woke up on Valentines Day at 2:00 AM to a very uncomfortable sensation and realized my water had broken, 5 weeks too early. The doctor told me to get to the hospital right away. After having contractions for 7 hours with no dilation, they said I needed a C-section. I had just sent James home to take care of Seamus' morning treatments because I thought it was going to take awhile before any decisions were made but when they decided on the C-section, they meant right then. I had to tell James to quickly come back and he literally almost missed the whole thing. I was in the Operating room on the table within minutes of the birth before he got back.<br /><br />Cormac was born at 9:39 am, 6 lbs, 19 inches, our perfect little Valentine. You would never knew he was a 35 week preemie.<br /><br />The rest of our stay was pretty uneventful, after I got over the severe nausea and vomiting from the spinal they gave me. Mac had some breathing issues and spent a night in the NICU but nothing uncommon for a preemie. I also picked up a cough that I thought I got from Seamus when he came to visit. Seamus was just thrilled to meet his little brother.<br /><br />We were discharged on Thursday and within a couple hours of being home, I was horribly sick with fevers and chills and the doc wanted me to head back to the ER to check for an infection. I spent the whole night getting all kinds of tests and they finally diagnosed me with pneumonia. I stayed in the hospital until Sunday after begging them to let me go home to my baby. They found out I didn't get it from Seamus but got it because of the vomiting which had aspirated into my lungs. <br /><br />We're all home now and everything is going well. Seamus is such a good brother and can't wait to teach him everything. Pictures to come soon.<br /><br />On another note, I know some people were confused because on Facebook, I had originally mentioned twins. I was pregnant with twins but we found out early on that one of them was very sick and at 15 weeks, his heart stopped. I wanted to let people know but it was a pretty difficult time and not something you can easily post about on Facebook.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com6tag:blogger.com,1999:blog-5921626550149690899.post-35511122476461908182010-12-29T14:40:00.009-05:002010-12-29T16:23:28.647-05:00For SeamusOne day, Seamus is going to find out the circumstances of his brother's origins and I wanted to write down the story to help him understand.<br /><br />When you have a child with Cystic Fibrosis, deciding whether to have more children is a difficult decision with much to take into consideration. We did not make this decision lightly. <br /><br />My childhood was full of moments that I couldn't imagine getting through without my brother being by my side and I know James feels the same way about his siblings. We always wanted Seamus to experience that too. He is definitely in for a bumpy road ahead and there is nothing like the love of a brother or sister.<br /><br />But we also knew the risks. The chances of having another child with CF was 25% which may not seem like a lot to some people but it's huge when you are looking at your child suffer in the hospital and have to watch him go through all the daily stuff he has to endure just to try to stay healthy.<br /><br />Another CF mom I know put it well when she said "Women take all kinds of precautions like not eating soft cheeses or raw fish when the chances of that causing a problem are so small. Why would I take the much bigger chance of giving another child a horrible disease like CF?" <br /><br />If we had another child who did have CF, I can't imagine the guilt I would feel. Not only for bringing the child into the world knowing how much he would suffer, but also knowing I would be affecting Seamus' health as well. The recommendation is that people with CF should not be within 3 feet of each other because of cross contamination but obviously CF children in the same family can not adhere to that. Whenever one grew something in their lungs, they would be sure to give it to the other. <br /><br />There is one way for two carrier parents to have a child and insure (at least 95%) that they will have not the disease, and after many years of deliberation, that is what we decided to do. It's called Pre-Genetic Diagnosis (PGD) which is used with in vitro fertilization. They can tell as early as 3 days whether an embroyo carries the genes for CF. <br /><br />It's a very touchy subject in the CF community because people have many opinions about it. Some think we should leave it up to God who does or does not get the disease or they think a cure is going to be found soon, so if another child has it, they will be fine. Some people who have CF feel that if their parents had used PGD they would never have been born and maybe it makes them feel like the world is telling them they shouldn't exist. <br /><br />I want Seamus to know that is not how we feel at all. We would never, ever change anything about you. You are a kind and compassionate little boy and we know part of that comes from your experiences with CF. We desperately hope for a cure, but with or without one, CF will always be a part of the wonderful person you are. <br /><br />I hope you can understand why we made the choices we did for your baby brother. We wanted to protect both of you. You are going to be a fantastic big brother and he is going to love you so much, just like Mommy and Daddy.<br /> <br />In no way did I write this post in judgment of other CF parents who may have made a different decision than ours. There is no easy answer and I respect any parents who have to deal with these issues. I ask that you respect our decision as well.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com5tag:blogger.com,1999:blog-5921626550149690899.post-75249624002788775772010-12-22T16:23:00.003-05:002010-12-22T16:43:12.338-05:00Catching upIt's been a busy Fall and Winter at our house. The big news is I'm pregnant! We are expecting another son in March and we're all excited. I think Seamus was more excited earlier and just wishes it would be over already. When I ask him to come feel the baby kick, he rolls his eyes and says "Mommy, I don't need to feel the baby again." Mommy also wishes it would be over soon. This is hard work for a "mature" lady like me.<br /><br />Seamus was sick the entire month of November. He started the month with an endoscopy because an x-ray showed a piece of his old g-j tube stuck in his stomach. They went in to remove it but then couldn't find it. However, the breathing tube used for anesthesia seemed to stir up gunk in his lungs because two days later he ended up in the ER with pneumonia. He stayed for a week and then went home on IV antibiotics for another two weeks. After that, he still wasn't better and has been on oral antibiotics hoping to finally kick his cough that he's had since July. He finishes on Christmas Day and hopefully he can get a Christmas miracle and have it be gone for good.<br /><br />He's been enjoying school a lot this year. He's a big Kindergartner and is really learning a lot. He told me today he can't wait for Christmas break to be over so he can go back to school. We're having a very difficult time trying to find a school for him next year. His current school is just Pre-K and K. Our local elementary school has class sizes of 30-35 which would definitely not work for him because of all the germs.<br /><br />He's still taking dance class, tap and ballet, and even though he's not the most coordinated, he still loves it. And of course, he still spends hours each day drawing and cutting his "paper dudes". I think art is going to be his thing.<br /><br />Seamus is very excited about Christmas but I think he's catching on about Santa. He keeps talking about how the Santa he saw this year didn't look like the one from previous years. He's too smart for his own good. Yesterday, he ran around the house and collected all the tissue boxes and drew family portraits on all of them. Then he wrapped them up for Christmas presents and said "Now when they blow their nose, they can look at pictures of their family." He's very thoughtful.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com1tag:blogger.com,1999:blog-5921626550149690899.post-61613879513627199642010-07-12T21:57:00.005-04:002010-07-13T02:48:25.561-04:00Not okayI had a stomachache one day and I was complaining about it. I asked Seamus "How do you do this all the time? Does your stomach hurt everyday?" <br /><br />"Yes"<br /><br />"I'm sorry, baby"<br /><br />"It's okay, Mommy"<br /><br />But you know what, it's not okay. <br /><br />It's not okay that just the thought of pooping can make him cry.<br /><br />It's not okay that we're no longer surprised when he jumps up in the middle of dinner to go throw up and then comes back and finishes his meal like nothing happened.<br /><br />It's not okay that some days he is so gassy and distended that he can't tolerate shaking in his vest because it hurts too much. <br /><br />It's not okay that every day a four year old boy has to be tied to his feeding pump for 2 hours getting Miralax pumped through him in order to poop, along with Mucomist to make it less sticky, Erythmycin to improve motility, Prevacid for reflux, probiotics for bacterial overgrowth, swallowed Flovent for eosinophilic esphogitis, and Pentasa for colitis.<br /><br />It's not okay that he gets humiliated when he has accidents, which are no fault of his own, because of all the medicine he gets pumped through his system. <br /><br />It's definitely not okay that even with all the daily meds, he still gets blocked up and now needs a weekly heavy-duty four hour clean-out with Go-lytely which means every Sunday we can't leave the house because you never know when it will go into effect.<br /><br />There is just nothing that's okay about what he has to go through.<br />-------------------------------------------------------------------------------------<br /><br />He had CF clinic on Friday. Our regular doc, Dr P, is on maternity leave so Dr Preston Campbell, the medical director of the Cystic Fibrosis Foundation was filling in. He was really good with Seamus and talked with us for a long time about Seamus' GI issues. He told us he has never seen any other CF patient with such extreme GI issues. That was a shock because he has seen thousands of patients. At first, I thought, "Okay, we're not crazy. This <span style="font-weight:bold;">is</span> really serious" but then I thought "Oh shit, we're not crazy. This is <span style="font-weight:bold;">really</span> serious."<br /><br />He didn't really like it that so far, the treatment has basically been just to keep increasing Seamus' meds and when that doesn't work, admit him for a longer clean-out than we can do at home. He didn't really have anything new to offer that could help Seamus currently but he does feel that there is hope. Some of the new drugs being developed work specifically on Seamus' type of gene mutation. There is also a new enzyme which should be approved soon that is the first one not made from pigs. Since Seamus' most severe food allergy is to pork, that's good news for him.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com6tag:blogger.com,1999:blog-5921626550149690899.post-33648682047805439162010-06-18T11:46:00.003-04:002010-06-18T16:48:13.311-04:00Thank you, Mary KateWe met <a href="http://www.MKMcKenna.com">Mary Kate McKenna</a> last year when she did a photo shoot of Seamus for <a href="http://www.littlestheroesproject.org/">"The Littlest Heroes Project".</a> Seamus and MK hit it off right away and although we only spent a few hours with her, we've kept in close touch.<br /><br />She is getting married this weekend and this what she posted yesterday on her Facebook account:<br /><br /> <em>Many of you have asked what you can do for our wedding- I have a simple request- please donate to the Cystic Fibrosis Foundation in honor of one of my very favorite people on this earth, little Seamus, who stole my heart when I photographed him and his family last year. (here's some photos: http://bit.ly/seamusc) Seamu...s (child of James Coleman and Julie Scheib Coleman) is an incredible kid- so let's use this time of celebration to help find a cure for this painful disease. Thank you all so much! http://www.causes.com/causes/469?m=9e4cc0c7&recruiter_id=398845</em><br /><br />She is the one who should be recieving gifts yet she gave <strong>us</strong> the best gift of all. I can never repay her. She truly is amazing.<br /><br />Not only is she a great person, but she's also a fabulous photographer. Here's a video I made of her photos. I've posted it before but I can watch it over and over.<br /><br /><div><embed src="http://www.onetruemedia.com/share_view_player?p=8c1c7cea94f6fb9ee95c39" quality="high" scale="noscale" width="408" height="382" wmode="transparent" name="FLVPlayer" salign="LT" flashvars="&p=8c1c7cea94f6fb9ee95c39&skin_id=701&host=http://www.onetruemedia.com" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer"></embed><div style="margin:0px;font:12px/13px verdana,arial,sans-serif;line-height:20px;padding-bottom:15px;width:408px;text-align:center;"><a href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt4" target="_blank" style="text-decoration:none;">Make an on-line slideshow at <span style="text-decoration:underline;">www.OneTrueMedia.com</span></a></div></div>Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com1tag:blogger.com,1999:blog-5921626550149690899.post-80469974986972605872010-06-15T12:53:00.004-04:002010-06-15T13:03:56.847-04:00BeautifulLast night we were expecting a thunderstorm after a stifling, humid day. Just around dusk, I went out on the back deck for a minute and noticed something so I called to Seamus to join me. <br /><br />There were hundreds of fire flies twinkling in our yard and in all the surrounding neighbors' yards. I've never seen anything like, even out in the country where I grew up. Seamus and I stood out there watching in silence, except for a few oohs and aahs, for a very long time before the rain finally started. It was still too beautiful to go inside so we sat under the picnic umbrella and enjoyed the rain and cool breeze.<br /><br />Later, when James came home, Seamus told him all about the "lightning bug show". That's one I'm going to treasure.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com0tag:blogger.com,1999:blog-5921626550149690899.post-26093608541828979912010-05-20T16:23:00.002-04:002010-05-20T16:28:08.673-04:00Conner<object width="250" height="250"><param name="movie" value="http://widget.chipin.com/widget/id/b4e7745cb93c7084"></param><param name="allowScriptAccess" value="always"></param><param name="wmode" value="transparent"></param><embed src="http://widget.chipin.com/widget/id/b4e7745cb93c7084" flashVars="" type="application/x-shockwave-flash" allowScriptAccess="always" wmode="transparent" width="250" height="250"></embed></object><br /><br />Please help out <a href="http://www.notsobrightandshiny.blogspot.com/">Conner's family</a>. They are in the unthinkable position of having to plan a funeral for their 7 year old son. Please donate what you can.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com0tag:blogger.com,1999:blog-5921626550149690899.post-58274314658347891512010-05-18T13:41:00.003-04:002010-05-18T14:02:34.267-04:00StridingThis past weekend was our Great Strides Walk and it went well. Team Go Seamus Go raised almost $4000 and the whole site that day made almost $150,000. So it's a good thing, a wonderful thing, that I know is helping fund the great research that is getting so close.<br /><br />But I hate it. I feel like everyone in the CF community gets so excited and has a good time but every year I hate it. <br /><br />I hate it because it reminds me that my son's life literally depends on these stupid walks and begging people for money. <br /><br />I hate it because I am so worried that one day soon, he's going to look at his face on those t-shirts and not say "Hey, that's cool that everyone is wearing a picture of me" but "What's so wrong with me that all these people are making a fuss?" and "Why are these people making speeches about young people being sick and dying too soon?"<br /><br />I hate it that I have to worry if he's playing on the playground next to another little kid with CF who has something growing in their lungs that can kill him.<br /><br />I hate it because it reminds me that Seamus' bouts of sickness seem to be getting more frequent and it is getting commonplace to hear his cough.<br /><br />I hate it because it reminds me what this horrible disease has done to wonderful people like Eva and Conner and thousands more like my son.<br /><br />So I'll leave it to other people to celebrate. I just don't have it in me.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com4tag:blogger.com,1999:blog-5921626550149690899.post-78316256838376869622010-02-05T14:45:00.012-05:002010-02-05T16:26:11.009-05:00Snow boundSeamus has a serious case of cabin fever...<br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxpf5H_3OSuf3UgKx91ZpON5KulNEPrC1EaXxZtcFCBiS8csZabU0YQHyJMcB04PesfqcPc_LCetwBOmqN_RQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyUCBV2Vt1wTNG80fUY6rL0nLtMwrnO4oxaPi7HrCrXyS9hiswIMb5yLzIixwT7H_mYzt3d-r0F63lnrfY-zQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzQ-UcSAX_lj5LwJRutJilclIyrHKd0fdusuIVlC1SZ3WrDGnZipYGpKr8APm1iJF5hk39GuhJ6UXzGHpoNkA' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzrGNDQ9-lM_95Vv747AYH9srm0Z9Z317lxv4oUOBqrOnu3dU9x85uSOgsBaSpOnCLq3yvUAMm2GPpmg65ULQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz37AfMuP3z21se9cBtiW-LL6OUgsWdYdaxi7h_TJhzs6QZtpFTzx9BBDCer00l2mPkM-6xVOK4rEiQMfDNAA' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dx48JyjIAVr9GuCxmLtQIHp0yxzok8XeZGPU9VQUoBDmd4ng_Y_ILVLXKgvoUDzCrg8g77vVHVxTFt6LUVHug' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com2tag:blogger.com,1999:blog-5921626550149690899.post-47699840312069953022010-02-03T21:03:00.010-05:002010-02-04T13:21:56.597-05:00Snow, snow, snowWinter has been rough on Seamus. In the entire month of January, he was able to go to school only 3 times. First it was the hospitalization, then MLK Day and Parent/Teacher conferences and then the flu swept through his school so we kept him home for a few days. So he's had a bad case of cabin fever and now all the snow has added to it. We had a snowstorm last Saturday, more snow last night, and we're expected to get almost 2 feet on Saturday again.<br /><br />We've tried to keep busy by playing computer and Wii games, sledding, making snowmen, and of course, drawing and cutting dudes. Today, James and Seamus took an inventory and actually counted almost 200. <br /><br />Being cooped up has made him pretty snarky. He's getting more and more defiant and spending much more time on the Naughty Step. Tonight at dinner he started pounding the table and told me he was very frustrated because he did not want fish sticks.<br /><br />He's also decided he's a big boy and no longer likes to snuggle before he goes to sleep. We read books and then he tells me leave. Sometimes after I leave, I hear him roaming around his room dragging his IV pole around with him.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com0tag:blogger.com,1999:blog-5921626550149690899.post-57332307805133173402010-01-21T21:01:00.004-05:002010-01-21T22:10:32.840-05:00The clean out took longer than we expected. He wasn't clear until Saturday after about 24 liters of Golytely. He had <span style="font-weight:bold;">a lot</span> of malabsorption that was stuck. We go back to CF clinic tomorrow and have to discuss switching enzymes. He takes 9 Pancrecarb MS4s with meals which is already the highest dose he can take so I don't know what else they can do. He also seems to have caught something while he was in there because he's been coughing and pretty junky sounding.<br /><br />Seamus has a new hobby, cutting with scissors. Santa brought him a pair of kiddie scissors and they're his favorite present, by far. Seriously, from morning until night, he cuts, cuts, cuts paper "dudes", pictures out of magazines, or anything he can find. He's surprisingly really, really good at it and we spent hours in the hospital drawing and cutting all the Disney and Nick Jr characters. <br /><br />A funny hospital story: I had to leave the room for a minute so I showed him how to use the call button and told him to call the nurse if he needed her. Apparently, as soon as I left the room, he pressed it and said over the intercom for everyone to hear "Hello, my name is Seamus and I would like some crayons please."Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com0tag:blogger.com,1999:blog-5921626550149690899.post-2773591899347913292010-01-13T22:28:00.003-05:002010-01-13T22:56:11.420-05:00Some of the worst words a parent could ever hear (besides "I'm sorry, your baby has Cystic Fibrosis) are from your child begging you to make the pain stop and being completely helpless. <br /><br />"Please Mommy, make them stop. I said please." It breaks my heart every time we are in the hospital and Seamus pleads with us to stop the doctors/nurses from doing some very painful and scary procedure. We are supposed to protect him and I feel like we are letting him down. I put on a good face and act strong so he won't be as scared but I feel like a piece of his innocence is taken away each time.<br /><br />Finally after screwing around with home treatments that weren't making any progress, he finally got admitted last night. He is doing okay but is still not clear after 24 hours straight on Golytely. <br /><br />I was feeling pretty low today and then I thought about all the great things we've been able to do that we wouldn't have if Seamus hadn't been in the hospital 19 times. We've spent hours and hours playing with play dough, drawing pictures, telling silly stories, and laughing. We do these things at home too but while we're here, there are less distractions and more time to just concentrate on each other. Obviously, it's not all fun and games (see paragraph two) but it's not all bad either. <br /><br />I hope that's what Seamus can remember too when he thinks back on his childhood hospital stays.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com2tag:blogger.com,1999:blog-5921626550149690899.post-4640696961562279042010-01-08T09:43:00.002-05:002010-01-08T09:51:30.000-05:00Quick updateWe did the clean-out on Wednesday which helped a little but his tummy still hurt and he wasn't pooping much. Dr C said he needed an x-ray which we got yesterday afternoon and surprise, surprise, he is still full of poop. He wants us to do another 4 hour clean-out today. I feel like we're spinning our wheels.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com0tag:blogger.com,1999:blog-5921626550149690899.post-1922508870680414252010-01-06T09:50:00.005-05:002010-01-06T10:47:13.595-05:00Clean outA few days ago, I had a stomachache and I asked Seamus what he does to feel better when his tummy hurts. He patted his tummy and said "I do this". Over the next couple days, I noticed he pats his tummy an awful lot. When I asked him if it hurts, he told me "Mommy, it hurts everyday". We've repeatedly told the doctor who doesn't have much else to say but now that his pooping has definitely decreased too, he wanted us to start a clean out.<br /><br />We started a home clean out with Golytely this morning but the amount we can do at home safely usually barely scratches the surface for Seamus. It's just a prerequesite so when we get to the ER and they tell us to go home and give him Golytely we can say we already did, now admit him.<br /><br />We'll see what happens.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com3tag:blogger.com,1999:blog-5921626550149690899.post-21943902390504951662010-01-04T19:18:00.015-05:002010-01-05T13:13:19.755-05:00Oh boyMy sweet darling angel hit a boy at school today. He was playing superheroes and the other boy was the bad guy. This whole superhero thing is getting out of control.<br /><br />It's weird because his teacher told us at the beginning of the year it wouldn't surprise her if there was some kind of physical altercation at some point between Seamus and this boy. This little boy was not in the class last year so he didn't know that Seamus was the "Alpha Male" and everybody followed his lead. Seamus wasn't used to sharing the spotlight. I was appalled when the teacher told us this.<br /><br />When we told her all the girls loved Seamus last year, she said "Well, maybe the 2 year olds.." Again, I was annoyed. My little boy is perfect and charming so of course, the girls would still love him. Well, my charming little toddler has turned into a rough, tough boy always on full speed. It's no surprise the girls in their princess costumes and nail polish want nothing to do with him anymore. Okay, Miss Anne, you know your stuff.<br /><br />Here are some pictures as promised...<br /><br />I haven't posted pix in a long time so here are some of the highlights from Halloween, Thanksgiving, Christmas and New Year's (notice the hats and the "dudes").<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjYeNLqcMFl4UHrhPk0M-6wy74LN2AOuO4pDKbjKd-IJbagKOLBHTJwtDgSVg8Awr4O4JR7Ql7jxVSp3gn9GEEC_xG9rmAUCYcliFIm0ZA8jPbtTOKmTjWbKewZqxVABAIkZDQOiZh8Dc8/s1600-h/IMG_0085.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjYeNLqcMFl4UHrhPk0M-6wy74LN2AOuO4pDKbjKd-IJbagKOLBHTJwtDgSVg8Awr4O4JR7Ql7jxVSp3gn9GEEC_xG9rmAUCYcliFIm0ZA8jPbtTOKmTjWbKewZqxVABAIkZDQOiZh8Dc8/s320/IMG_0085.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5423071008702971826" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIW2xdwyL2DpeXBTC04IYDceiHXxZckpEkm-gVxB2s3w6s-DBcnKuuGQPsX6fQysvu6wE4bCtSHQyrw1-XL0VYgxx5B6xG1yDfMEuMPMqJxKt2hShZIs-t0u_c6aSzVlrpi2rJB8VpLqXB/s1600-h/IMG_0080.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIW2xdwyL2DpeXBTC04IYDceiHXxZckpEkm-gVxB2s3w6s-DBcnKuuGQPsX6fQysvu6wE4bCtSHQyrw1-XL0VYgxx5B6xG1yDfMEuMPMqJxKt2hShZIs-t0u_c6aSzVlrpi2rJB8VpLqXB/s320/IMG_0080.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5423071001304166226" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrwhsO5w06xl771QP6Q87Wm-tPq-yTQArZvoEWn83T1D1bL9VV_aMl_ZESVqlfjIXjtjsZNZXoJa8SyOUB00466oLq5LjuQvqMYWQovUoY4LNm1_B31ci90KMh14rc3iDDch5l-cDTcKqU/s1600-h/IMG_0071.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrwhsO5w06xl771QP6Q87Wm-tPq-yTQArZvoEWn83T1D1bL9VV_aMl_ZESVqlfjIXjtjsZNZXoJa8SyOUB00466oLq5LjuQvqMYWQovUoY4LNm1_B31ci90KMh14rc3iDDch5l-cDTcKqU/s320/IMG_0071.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5423070996101893570" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-jtxibpRtzy7xerHgpV3hYOXGfE3XhOrStUR9JVhBLHP16OiGMtxOdKV5ZBQTVZMP1DZ4ninPm0yGFKfN_plBRg9K3O0qWKQIMceD5ZXfhQJRi27Ow622RFncHwhn3MgjZnbx0AUcf4bV/s1600-h/IMG_0097.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-jtxibpRtzy7xerHgpV3hYOXGfE3XhOrStUR9JVhBLHP16OiGMtxOdKV5ZBQTVZMP1DZ4ninPm0yGFKfN_plBRg9K3O0qWKQIMceD5ZXfhQJRi27Ow622RFncHwhn3MgjZnbx0AUcf4bV/s320/IMG_0097.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5423072223838553426" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgynUT03nRhL9FUAaXP9xG5hrJmqn6-CHGLbKhfEZ1a7ZQKvg41P9BeKFBmKoIcS87PpXyG6Iu8nyD5SL20kYuvyZYoTAakcN14qphbLSzMv3kjQcgRwteVTn7nq4ZbJTHkE2SKOcGwtp3a/s1600-h/IMG_0096.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgynUT03nRhL9FUAaXP9xG5hrJmqn6-CHGLbKhfEZ1a7ZQKvg41P9BeKFBmKoIcS87PpXyG6Iu8nyD5SL20kYuvyZYoTAakcN14qphbLSzMv3kjQcgRwteVTn7nq4ZbJTHkE2SKOcGwtp3a/s320/IMG_0096.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5423072219273232018" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifEYXgwr1HE8sumCeGR3DYqvbE_pwqCja0n75alRmlzRx5H6ltCHSpXotoLqa5UGk2D0Ap6nVER07OWaifHQ9sg_8xvSRP-ojqbRn2BpjRtohvDAmmq_3G9VMsqdv2P8Kp_VTuXvMLxjT6/s1600-h/IMG_0092.JPG"><img style="float:right; 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margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVk8Ux6dtJstyqkKPNkOzHJQ7I-iwnfqyY30AUUpisDndTsQi8mHp62DWWovfL4E39fmQGLrWshOxUeCUrF4IlJjjmSPIeD6CVPhYgDzfDED_Vk7fNRJMx1rUB5X67iAHhpCHMHFE97Exj/s320/IMG_0018.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5423074423415185202" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh13D_RjKBAhvSD0wV2ivIKrJ4Rv59iWR8ex98IWpKloci4u8FeVD-RyhFLYTaTpqn7m_trJSzz67Ajf1-WhyGlavD7YgJ0m-NHCvTxcXfxRuoika7XD3VOwemO6KHs-9EGk41pTkKe6BaT/s1600-h/IMG_0099.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh13D_RjKBAhvSD0wV2ivIKrJ4Rv59iWR8ex98IWpKloci4u8FeVD-RyhFLYTaTpqn7m_trJSzz67Ajf1-WhyGlavD7YgJ0m-NHCvTxcXfxRuoika7XD3VOwemO6KHs-9EGk41pTkKe6BaT/s320/IMG_0099.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5423074917940459730" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrPIxV-5r0PE7LDY_tLTkgiulIny8FrA8Fxp2QzmxSER507XEvp-dLl0XdldQdGIJZTYjgWsa5AGGAEvgm82CjDcIgk_251QwrIw1tiEJ6PR7x8DfmsSmUjWB41810ptjDDdbS0PPX4Sv7/s1600-h/IMG_0067.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrPIxV-5r0PE7LDY_tLTkgiulIny8FrA8Fxp2QzmxSER507XEvp-dLl0XdldQdGIJZTYjgWsa5AGGAEvgm82CjDcIgk_251QwrIw1tiEJ6PR7x8DfmsSmUjWB41810ptjDDdbS0PPX4Sv7/s320/IMG_0067.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5423074913116621458" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrUL8luaol9B9zc_I-XzQedqLVCBQTp_DUq7WdHGK53ydaPw3Kp-lKSGMtNlfyNqU8NwkWAh38ca9q4LjRcDIxNX6JVycJFTmgsQuMgOMiCezJOGfua2ecE8RBiRwj3IKJucNwlfXT1X9Z/s1600-h/IMG_0061.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrUL8luaol9B9zc_I-XzQedqLVCBQTp_DUq7WdHGK53ydaPw3Kp-lKSGMtNlfyNqU8NwkWAh38ca9q4LjRcDIxNX6JVycJFTmgsQuMgOMiCezJOGfua2ecE8RBiRwj3IKJucNwlfXT1X9Z/s320/IMG_0061.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5423074905720623458" /></a>Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com1tag:blogger.com,1999:blog-5921626550149690899.post-13815850208833665502009-12-30T21:13:00.006-05:002010-01-02T23:37:33.439-05:00I'm backI'm just going to pretend it hasn't been two months since I last posted and start the New Year off right.<br /><br />Our holidays were very nice. We went down to North Carolina and saw lots of people. We saw my brother and his family who we haven't seen in more than a year. Seamus adores his cousins, Alex and Cassidy. We celebrated Christmas and Alex's birthday the week before actual Christmas day. We spent some time with James' sister Carol too whom we hadn't seen in a long time.<br /><br />We visited with our old friends Trish and Joe and their kids. They are much older than Seamus but are they were so nice to play with him for hours. At the end of the day, he send "Mommy, this is a great play date!"<br /><br />Santa was nice to Seamus. The big present was Pluto (guess who named him?), our new doggie. He's the sweetest thing but he came with a long list of unexpected ailments: heartworms, kennel cough, vomiting, and enlarged prostate. We're working on getting him better.<br /><br />Uncle Rick came to help us celebrate New Years. Seamus always loves to see him. We spent New Years Eve playing the Dr Seuss ABC Stretching Game, which is like Twister for little folks, even though most of us are not so little. And of course, we made hats which is the tradition in our house for any special occasion.<br /><br />Seamus' newest obsession is Shrek. He asked for Shrek toys for Christmas but Santa had a very hard time finding any so instead he got the first two Shrek movies. We've discovered Seamus is a very good impersonator. He does a mean Shrek walking around the house saying "dawn-kay" and you've never heard anything as cute as "Jingle Bells" in a little Scottish accent.<br /><br />Our newest hobby is drawing and cutting out all kinds of paper "dudes". We've made hundreds, everyone from Santa to Buzz Lightyear to all the kids in his class. There is a whole sub-genre of super heroes like Super Sponge Bob, Party Man (whose super power is throwing great parties), and even Super Pillsbury Dough Boy. Today, we made Dancing Man, whose ability is to change bad guys into dancers and Bow Bear who is a bear but can change into a bee and turns bad guys into logs when she stings them. <br /><br />Reading is going really well. He's picking up lots of words and is starting working on writing his letters. We still do words-of-the-day and his vocabulary is pretty impressive, if I say so myself. We were playing a game the other day that I found frustrating and I said "This is maddening". Later that night he was getting annoyed with something and told me it was "bald on the head, that means frustrating Mommy."<br /><br />He started taking a tap/ballet class. He's the only boy with 14 girls but he doesn't seem to mind. Some days I can tell it takes a lot out of him but he has fun.<br /><br />His health has been relatively good. We've been really lucky respiratory-wise, no bad colds to speak of but he's gone back and forth a lot to the GI doc and had another scope. Even though he's in pain, they couldn't find anything new so he's still on the same regimen. Everyday it's a struggle with pooping and we know it can't go on like this. It shouldn't have to always hurt and you can't imagine how hard it is to have nothing comforting to say when he says "It hurts Mommy." <br /><br />I have lots of pictures which I'll update soon, I promise.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com0tag:blogger.com,1999:blog-5921626550149690899.post-10117842186504477852009-10-25T13:13:00.004-04:002009-10-25T15:45:21.669-04:00Memorable weekLast week started with a lunch trip to Burger King for James, Seamus, and myself. Surprisingly, it's one of the few fast food places where Seamus can get milk-free, soy-free, beef-free, and pork-free food and they give away good toys.<br /><br />As we were sitting there, a swarm of police ran by the window with their guns drawn. They ran over to the 7-11 next door. More and more policemen came and surrounded the place. Finally, a man came running out with no shirt on (in 30 degree weather) and a knife in his hand and tried to attack one of the policemen. Within minutes, at least 10 gun shots went off and the man was dead. <br /><br />We had tried to shelter Seamus but the place was all windows and he saw a great deal of it before I could grab him and cover his eyes. I was much more shaken up about it than him. We don't let him watch violent tv but he's a 4 year old boy obsessed with super heroes so he's seen it and to him it's clear cut between the good guys and bad guys. When he casually asked me "Is the bad guy dead?" I knew he wasn't processing the difference between real life and tv. I told him that people may do bad things but that doesn't mean they are bad people but it went over his head. So far, he doesn't seem to be affected by it. I can't say the same for me.<br /><br />On Wednesday, Seamus and James went to on a pumpkin patch field trip with school and had a fun time. They saw lots of baby animals, including piglets just a few days old, went on a hayride and picked out pumpkins.<br /><br />Friday was CF clinic day and Seamus had a great visit. He's gained two pounds and grown half an inch so we were thrilled. He also got his H1N1 shot which takes a lot off our mind. We talked with the clinical researchers about getting Seamus in the hypertonic saline trials. Although it will add extra time in his morning and evening treatment routine and he doesn't have a lot of pulmonary issues currently, we thought it would be good for him. Maybe it will help keep away some lung infections this winter. Also, because he's not a good spitter, any stuff he coughs up ends up being swallowed adding to his already super sticky stools. So we figure if the mucuous is thinner in his lungs, it may help the GI issues too.<br /><br />We spent yesterday making Batman and Spiderman masks and then going for a "Fall Hike" through our neighborhood in our disguises. Today we made pictures with the leaves we collected. <br /><br />Lately, Seamus has been asking lots of questions about when he was a baby so we've been looking at photo albums. I didn't realize it but he thought that he was born with his feeding tube in his stomach and was surprised to see himself without it in pictures. It makes sense because he was too young to remember when he got it. <br /><br />He's also been asking about what his kids will be like when he's "all grown up" and who their mommy will be. He thinks it's really funny that I will be their Grandma. For the longest time, he's been saying to anyone who will listen "I want to be a Daddy." I know he's going to be great.Juliehttp://www.blogger.com/profile/14213549314707396509noreply@blogger.com1