History

Sunday, August 9, 2009 8:55 PM CDT

Hello everyone,
James is healing well from his surgery but he now has a raging case of cabin fever! The first few days home were OK, he was not allowed to go up and down stairs at all and was he was still feeling pretty sore. After so many days of helping him get up I pulled a muscle in my upper back and had horrible muscle spasms for a few days. On James' second day home he began talking about what happened to him in the recovery room, I had been hoping that all the morphine he had would wipe out the memory, but no such luck. He began telling me how scared he was and how he felt like his heart was going to stop and how much pain he was in and he said that he could feel himself fading out. So it broke my heart all over again. He became very fearful that something like that would happen again. Because he was on a ventilator during his surgery his throat was a bit raw for a few days afterwards, every time he felt like "his throat was cluttered" he thought he was going to have another asthma attack and not be able to breathe and then he would panic. For some reason James has never learned how to clear his throat, weird.

Because some of his abdominal muscles were cut during the surgery laughing, crying, coughing and sneezing have all become extremely painful for James. So he has not been able to watch certain shows because he would start to laugh, then cry from the pain and then think he was having and asthma attack and not be able to calm down, a very strange cycle. So James has not been able to watch any Tom & Jerry or The Simpsons, and we have had to change the channel during some episodes of Spongebob because they crack him up too much!

Slowly buy surely we are trying to get back on our feet, James has been unable to walk since his G-tube was removed back on July 7, so he has been down for a while. He is now starting to stand upright once again! I was starting to forget how tall he is. He is able to go up and down stairs once again, but with constant reminders to take it easy and slow down, he often tries to bound the stairs like he used to and ends up flat on the ground, sheesh boys!

All of the wonderful notes and messages left here in the guest book have really meant a lot to James, he marvels "so many people love me and want me to get better, and I'm not even famous! I'm just a kid!" A special thanks goes out to an angel that sent him 2 Mario T-shirts, we love you, even if it means that I have to wash one every other day because he will wear nothing but Mario shirts now, you are the best!!

James still has a drain inside of his incision, basically it looks like two wires coming out of the ends of his site. I take him to Georgetown on Tuesday to get the drains out and he gets his steri strips off then too and we can see what his new belly looks like. He's nervous about getting the drain out and constantly asks why they just cant put him to sleep again to take them out, ugh! Wish us luck!!

Tuesday, August 4, 2009 3:47 PM CDT

Hello All!
Thank you so much for all the thoughts and prayers coming our way this week, it really means a lot to us, and James gets so excited when I read him the notes left in the guestbook.
The surgery yesterday went very well, it took a little over an hour and there were no surprises. The staff at Georgetown were amazing, we are so used to military healthcare, which has been wonderful, but this was just a different atmosphere. I was able to accompany James into the OR which he said looked like a UFO. They gave his a little gas the knock him out before starting his IV, then I had to leave him, it never gets any easier and leaving him in there was gut wrenching to say the least. While the surgery was underway we were in the nearby waiting room, where they have a nurse whose sole purpose is to go into the ORs and check on the patients and report back to family members on how the surgeries are going. She was so sweet and it was comforting to know that he was doing OK. James was taken to the recovery room and after a little while only one of us was able to go in and see him. Fred was really anxious to see him so he went in first. After a little while Fred came out so I could go in and see him. I got to his bedside and I could tell that he was hurting bad. I tried to comfort him but I could see that his pain was awful, suddenly he started making a weird noise and I realize that he is having trouble breathing, the noise I heard was his lungs. James had the worst asthma attack that he has ever had, it was terrifying. He began to panic because he couldn't breathe and the pain from the surgery was unbearable. The nurses had me step away from his bedside so they could work on him. James was trying to scream and reaching out to me, saying "help me Mommy please, help me, help!", it was one of the most terrifying moments of my life while I watched his oxygen levels plummet into the 70s and 60s (they are supposed to be 100). The nurses paged the anesthsiologist that had been with him in the surgery, they thought he may have to be intubated and put on the ventilator again because he was having such trouble breathing. Thankfully they were able to get a nubulizer breathing treatment in him and give him lots more morphine for his pain. He was in so much pain that he was crying which was making the surgery site hurt so bad and then he would cry harder and panic, it was an awful cycle. It took a little while for the morphine to kick in, but once it did I was able to calm him down. Once he got all his breathing treatment in his oxygen levels bounced back and he was able to be taken up to his room. But I think that recovery room episode took years off my life.
Once we were upstairs James began demanding a cheeseburger! And I've never seen him more angry than when I told him he was not going to have one, it was actually kinda funny! So considering that he had just had his whole belly reconstructed I thought that was a pretty good sign! I tried to get him to rest, but he is stubborn (I have no idea where he gets it from) and he insisted that he was not tired, considering how much morphine he'd had I was shocked he was zonked out. After a little while he was allowed to have a little apple juice and he took a few sips and it made him slightly nauseous so we took it slow. Georgetown is a teaching hospital so that means lots of medical students and a kid like James is fascinating to a med student and they want to know everything. I must have given his complete medical history, which is a loooong and sorted tale about 500 times! Finally the med students left and an angel sent from above arrived.......his name was John and he was a hospital volunteer and he came bearing video games!!!
James had arrived at the hospital completely kitted out in Super Mario gear from his favorite video game, he even packed all his Mario toys to take with him to the hospital. So when John the volunteer showed up with a gaming system packed full of no less than four different Mario games James declared that he was never leaving the hospital! So he refused to rest and played video James until late in the night.
The nice thing about Georgetown is that it is less than 10 minutes away from my parent's house, it is also where I was born. So Fred slept the hospital with James and I tearfully went to my parents house to sleep, I didn't want to leave my buddy again. Late in the evening our wonderful friend Father Gianni arrived to see James and give him an anointing, it meant so much to us that he came to see him.
When I awoke in the morning I called to find out that James had been up out of bed! He was still demanding a cheeseburger, but we placated him with a pop tart. I headed over to the hospital and James was still playing video games. James wanted to get up so he took a walk around the nurse's station and checked out the fish tanks. Early in the afternoon his surgeon came by to check his progress. His first reaction was "are you sure you had surgery yesterday, you look better than I do!". He was thrilled with James' progress and he said we could go home!!! We were expecting to be in the hospital for about 3 days, so it was great to get sprung so soon.
So I am typing this from home! James is hanging out in his room watching Disney channel and talking about all the wonderful video games they had at the hospital. James was sent home with a drain still in him and that will remain in for a week. Next Tuesday we will see the surgeon again for him to remove the drain. James has to take it easy for the next two weeks, I've already informed him that his discharge paperwork stated that he may not drink alcohol or drive.
Thanks again for all the support, I'll keep updating this site on his progress.

Sunday, August 2, 2009 7:11 PM CDT

Hello Friends and Family,
It has been two (!!) years since I've updated James' page, am I a slacker or what?! James has been doing well, only two 911 calls since I last updated. I just wanted to update the page since James will have surgery and be hospitalized for several days in the coming week. Caring Bridge is a great way to keep everyone informed and saves me from having to repeat myself. A little background................
In August of 2002 James had a Thal Fundoplication surgery to correct his severe reflux disease. At the same time he had a Hiatal Hernia repair and a G-Tube (feeding tube) placed. James has had major feeding problems since his premature birth and he was fed by tube for many years. The surgery completely corrected his reflux, actually a little too well, he was unable to even burp for two years after his surgery and anyone who has ever know a little boy knows that burping is way important. Fast forward to James in 2009 age 10.....after seven long years James no longer needs his feeding tube, yay! On July 7 James was admitted to Walter Reed Army Medical Center to have his feeding tube removed. The doctors did not have high hopes for getting it out the conventional way (a metal rod and lots of yanking and tugging) and they assured us that *never* had they been able to remove this particular type of tube without a certain surgical procedure. So they had James all hooked up to IVs and drugged up and were all ready to administer the Propofol. (Propofol? Hmmmm sounds familiar right? Uh yeah, isn't that the drug that just KILLED the King Of Pop whose FUNERAL we are watching on TV in the sedation clinic right now this very second!!???) Yeah, we weren't freaked out at all! Thankfully after a few doses of Versed and lots of tugging and some tears (not all of them from James) the docs were able to get the tube out and we didn't need the Propofol. ( I didn't tell Fred why that drug name sounded so familiar until after we got home.) James is bandaged up and the docs assure us that he can resume his normal activities the next day, they tell us that in 97 percent of patients the hole where the tube was (stoma) will close on its own in 12 to 24 hours no fuss no muss. Hmmmm 24 hours later there is still a big hole in James! 48 hours later the hole is oozing so bad James has horrible acid burns on him and he is bleeding and screaming. So the docs tell me to give it two weeks to close, ugh. Meanwhile James is miserable because acid is constantly coming out of him and he can't even walk without major leaking so he is house bound aside from a few short trips in his new wheelchair. We take another trip to Walter Reed to get more creams and gauze and see the stoma nurse and the GI doc all of whom are very concerned with how much he is leaking still and the condition of his skin. So they put in a consult for us to see a surgeon, and no one at Walter Reed can see us until August 4. A few days later I talk to the GI doc again because things are not improving at all and he miraculously gets us an appointment with a pediatric surgeon at Georgetown University Hospital the very same day. We high tail it to G'town and the surgeon was so nice (trust me this is usually sooooo not the case when it comes to surgeons) and he determined that James was one of the 3 percent of patients whose stoma will not close on its own. Unfortunately the surgery is not as simple as just putting a few stitches in the hole. Basically the surgeon will cut out all of the scar tissue that makes up the hole (stoma), then because of having the G-tube and other surgeries James' stomach is adhered to the inside of his abdomen, they will cut the stomach away from the abdomen,then stitch up the hole in the stomach, then they stitch the muscles back up to hopefully prevent any future hernias, and then close the skin. The surgery is going to be at 10:30 AM on Monday, August 3 and it should take about an hour and a half. James will remain in the hospital for a few days to recover. So in a nutshell, my kid has a big hole from his skin directly into his stomach and he's been leaking digestive acid out of this hole for a month now, so now we need to surgically repair the hole. I have gone through so much gauze in the last month its ridiculous! James has been his incredible amazing self through the whole ordeal he remains to be our hero.

Wheeeeew, didya get all that?
I'll update the page after the surgery to let everyone know how he is doing. We really appreciate all the prayers coming our way and all the notes and calls of encouragement, cuz we're all scared out of our minds! Thanks for reading! And if you have a few hours to kill and a strong stomach you can read all about our medical adventures in the journal archives ;-)

Friday, March 16, 2007 10:43 PM CDT

Hello Everyone,
It has been forever and a day since I was able to update! Sorry! My silence does not mean that life around here has been boring, it never is. This is gonna be a long one so go get a drink and have a potty break now..........

James was just sprung from a 4 day stay at Walter Reed Army Medical Center. He has been sick off and on since Christmas, but the latest round of sickness was a doozy. It all started with a sinus infection a few weeks ago, he took the antibiotics for 10 days and all was well for a few hours at least. Then he had a horrible, awful constipation episode that left him unable to stand or walk. This resulted in a few ER visits, lots of abdominal x-rays, enemas, suppositories and laxatives (oh my!). And me asking him about every five minutes 'did you poop?!' After our poop patrol let up a bit James got a nasty upper respiratory infection that inflamed his asthma. So he went on steroids for 5 days. Which made him grumpy and very hungry, kinda like his Daddy.

All was well for a total of about 34 hours when he awoke last Wednesday morning with a fever and his throat so sore he couldn't swallow, he was crying his head off. Off to Walter Reed we go when he begins having bad belly pain in the car on I-95 in horrible rush hour traffic. I pull over to try to calm him down and he tells me to keep going, he just wants to get to the doctor. About 30 seconds after I pull back into traffics he starts screaming and then retching horribly. Because of James' major stomach surgeries when he was 3 years old he cannot vomit and retching is extremely pain full for him, one such instance even caused him a stomach bleed a few years ago. I pull over with the retching terrified kid and I have no choice but to call 911, because I know that I cannot vent his tummy with his feeding tube and drive in all the freaking traffic with a retching kid all at the same time. By now the traffic reporter on WTOP is talking about the 'motorist on south bound 95 with a medical emergency' and I think "that's my boy!" He's still thrilled that he made the traffic report, not once but three times! Fred/Daddy was waiting for us at Walter Reed having taken the bus there from work so I had to call him and tell him James was coming via ambulance, not comforting news. So I have to leave James in the ambulance with the medics to be whisked speedily away while I had to sit in traffic for another hour wondering if he was OK. By the time I got to the ER James was happy as a clam telling his Daddy how much fun the ambulance ride was. Sigh. His rapid strep tests comes back with what the doctors call a raging case of strep, not regular old strep, but raging! All throughout his ER stay he has a great time batting his long lashes at the doctors and nurses, telling everyone he feels fine. Thereby making his mother, that would be me, look like an idiot. So he is given a dose of antibiotics orally and sent home. We all get in the car and I drop Fred off at his bus stop so he can head back to work, as soon as we pull away from Fred, James starts retching awfully again. So I pick Fred back up and take James back to the ER. They give him a shot of penicillin in his leg that will cover the 10 days of oral antibiotics, they also give him a dose of anti nausea medicine for the car ride home, he also charms the docs into giving him two popscicles. When I return to the ER after filling his prescriptions he is sitting on the lap of the attending doctor eating a popscicle and cuddling with her. They do notice he is quite warm and take his temp, it's 101.1. He gets Tylenol and once again we are released. James does well when we get home, I put him to bed with more Tylenol and when it is due to wear off a few hours later I check on him sleeping, no fever but he is scratching at is neck like he has fire ants on him.
The next morning James awakes and his throat feels much better. He is however itching a lot. When he takes his jammies off I notice that his neck chest and abdomen is covered with a red rash that feels like sandpaper. Hmmmm, wonder what that could be? I look step throat online and read about a complication of strep, scarlet fever? Huh?! Do people still get that? Isn't that something from the age of polio? Nope, the description of scarlet fever matches the rash James has perfectly. So I make an afternoon appointment at the local pediatric clinic, and they confirmed it, scarlet fever.
James was doing ok, just itching a lot, so I went and bough him every Aveeno product available and went home to bathe him and slather lotion all over which made the itching much better. We all eat dinner and all is well until bedtime when James starts complaining of his belly hurting. He says it feels like it does when he is constipated (although not that eloquently) so I mix him up a laxative cocktail and give him a glycerine suppository. What do you do on Friday nights for fun? He is still in a lot of pain, so I give him an enema and that seems to help a tiny bit. He was cuddling on front of the TV with Fred when he started vomiting, actually barfing! I'm not sure who was more shocked, him or us! He apologized profusely for doing so and for making a mess, he is my kid after all. He hasn't been able to barf in 5 years! I had a feeling things were getting bad fast, so off we go to Walter Reed ER. As soon as we get there and they begin to triage James he starts barfing again. He has a high fever now and he was drifting in and out of sleep and barfing occasionally still. After an hour or two of this we all want to barf, because they are *stripping the floors in the ER* the ammonia fumes are overwhelming and making James feel even sicker. At some point he also starts to have awful diarrhea. He gets an abdominal x-ray to rule out a bowel obstruction. James is hooked up to an IV now and we are trying to get some Tylenol in him to get his fever down. He is barfing anything he tries to take by mouth, and he is having diarrhea about every 10 minutes now, so a suppository isn't a good idea either. Whomever invents a fever reducer that can be administered by IV will be my hero and very rich indeed, so get right on it people. Some time during this fun filled time they decide to admit James to the pediatric floor but it takes about 5 hours to do so and we are stuck in the ER all night overcome by fumes, and in my case, panic attacks.
Fred stayed with James on the early hours of Saturday morning while I went home to try to get some sleep, when I ended up sanitizing my entire house and fantasizing about tenting the house with a termite tent and bombing it with Lysol. I head back to Walter Reed where my poor buddy is still so miserably. Fred, bless his soul, spent 3 hours giving him Motrin by syringe a drop at a time to try to get the fever down. James is still not tolerating anything orally and he is pooping every 5 to 10 minutes, no I an not exaggerating. Outside of the NICU ,which we are graduates of, I have never seen a kid so sick, and so violently ill at that. Father Gianni comes by to do an anointing of the sick for James and he gives Fred a special dispensation to drink soda during Lent, which he valiantly had given up and was refusing to drink the only available beverage in the hospital. James slept off an on when he wasn't dragging his IV pole into the bathroom and his fevers got up over 103. Fred again spent the night with him and I went home to be alone with my terror and Lysol. Sunday morning James was actually able to take a few bites of toast and keep it down, yippee! Now if only we could get him to stop pooping every 10 minutes, he is still running fevers. At one point James was so out of it, he didn't know who I was or what his name was, it was one of the most terrifying moments of my life. Thankfully he snapped out of it, but man that scared me. Fred went home Sunday afternoon to take a much needed shower. He called me from home to tell me that my entire side of our large walk in closet has collapsed, leaving an explosion of clothing in it's wake. Sadly, I have had this effect on a closet before in our previous home, it is a phenomenon my friends call 'critical mass', Fred thinks it if proof that I have too many clothes, I don't see what that has to with anything. About 10 minutes after Fred calls to tell me of the closet's demise he calls to ask where the Immodium is. UH-OH! Ugh, Fred has come down with the dreaded virus now too! He insists on coming back to the hospital anyway, he goes to the garage and his car won't start! I think the only way his day could get worse is if I told him I was pregnant, ha! Which I'm not for the record. Fred insists on staying at the hospital again even though he looks like death, unfortunately sleeping in the chairs at the bedside would have rendered me and my 3 herniated disks paralyzed so I couldn't really argue with him. So I go home to my cleaning products. Monday morning dawns and James can drink without barfing! He is still having lots of diarrhea but the docs think that he can hydrate himself now so we can take him home. Monday afternoon we leave the pediatric floor, and guess what they were doing? Stripping the floors! Someone must have gotten the memo about all the squalor at Walter Reed! Just kidding, we saw no squalor and I know every inch of that hospital. James received the best care and we are so grateful to Walter Reed for saving his life yet again.
James continued to poop like crazy Monday and Tuesday at home, but that stopped finally. He is still recovering and he has lost 10f his body weight, you can see his ribs. Hopefully Angelina Jolie won't come by because she would totally want to adopt him. So to sum up, James gave us quite a big scare that my sanitizing won't wash away, and Fred has lost a bit of weight himself. Fred went back to work on Wednesday and we are all trying to recover. Thanks to everyone for all your heartfelt e-mails and messages, it really means a lot to us, and James told me 'that so many people are praying for me because they are my family and they have to' I assured him that it's because he's so lovable. He remains to be my hero.
James has been home with me all week, and getting more bored as he starts to feel better. Looking back I can't believe that he had strep throat, scarlet fever, and horrible gastroenteritis all at once. The trifecta of diseases all coming together to form the perfect storm. At least now no one can fault me for my extreme germaphobia, although this incident has certainly not improved it!
Love & Prayers,
Maureen

Saturday, April 8, 2006 0:40 AM CDT

Sheesh! It has been a million years since I have updated, Bad Mommy!!
We're as busy as always here, and things are gearing up to get even crazier as we prepare for James' Daddy, Fred, to retire from the Air Force after 20 years of service! We're so proud of him we are bursting! He retires on April 21, and then he starts a new job working for the Joint Strike Fighter team on May 1st. He finished his MBA a few weeks ago, did I say we were proud of him? Cuz we totally are ;-) Fred does his last flight next Friday and James and I are going to go out on the flight line to watch him taxi in, I'll be sure to post pictures.
James is doing so well in Kindergarten! We were really anxious about him being in a regular classroom for the first time, but he is thriving. He loves his teacher and loves to do homework, obviously traits that he did not inherit from his mother, but take one look at him and it seems that he inherited none of my DNA, just my Irish temper. James is doing so well that he will not need regular speech therapy next year! This is the same kid that had virtually no language at 3 years old! In fact he now gets in trouble for constantly interrupting the teacher! He is doing great with his 'pre-reading' skills and he'll be reading on his own in no time.
Health-wise James has done okay this winter, I personally believe that sometimes it helps him to have a Mommy that is a raving germaphobe ;-) He of course likes to keep his parents on their toes, so he has been sick on every major holiday since Christmas. We had to take him to the ER on Christmas for a virus that caused a bad asthma flare up, so we piled on the steroids. Once the steroids kicked in he did well until New Years when he developed a raging ear infection (his first) and off to the ER we went again. So our holidays were no fun, but thankfully James recovered. So come Valentines Day we looked forward to a Day of love and romance, ha, ha, James came down with a virus and had high fevers for a few days. So we look forward to celebrating one of my favorite holidays, St. Patrick's Day. James is half Irish and half Italian, making him Italish, so he loves St. Paddy's Day too, we went to visit James' Bambi & Pop (AKA his maternal grandparents) at their beach house. Daddy was on a mission in Hawaii, where they had to make an emergency landing and stay an extra day, funny how he never gets stuck in less exotic locales! Anyway, we had a wonderful dinner of corned beef, cabbage, and soda bread, and James went to bed. I thought, 'wow we made it through a holiday without illness', I spoke too soon! As I truned out the light to go to bed, James awoke in horrible tummy pain and we had an awful night! James is unable to vomit (TMI, I know!) because of his stomach surgeries, so I spent all night venting his tummy with his g-tube and the rest is way too graphic so I'll spare you. So please keep your fingers crossed for an uneventful Memorial Day, Seventh Birthday and Fourth of July!
Thanks for checking in with us, I'll promise to post more often!
Love,
Maureen, James Patrick and Fred

Saturday, June 4, 2005 11:01 PM CDT

Wow, I know it has been forever since I updated, but I promise not to let so much time lapse again! I chose the turtle background, well, cuz I'm slow!
James has had a lot going on and we are averaging about 3 visits to Walter Reed Army Medical Center (WRAMC) a week, and that is if everything in OK. If James is sick then all bets are off. In fact just yesterday we spent all day at WRAMC getting new DAFO leg braces and Botox shots. And just as we were about to arrive home yesterday evening James came down with a virus that had us going to the local Nighttime Pediatrics clinic before we even got home! So James has a virus that includes sore throat, fever, congestion and cough. But it has been 24 hours since the onset now and hopefully he has a milder case of whatever virus this is.
James will have his last day of school on Friday, June 10. He has been in a Early Childhood Intervention (ECI) preschool for special needs kids for the past 3 years. Next year he will go to a regular Kindergarten! He has had the same teacher, aid, and therapists for the 3 years and he will miss them all so much. They have just worked wonders with him, when he started ECI he could barely put 2 words together at the age of 3, and now he *never* shuts up, lol!
James will turn 6 years old on Tuesday! I just can't believe it! A lot has happened in the last 6 years. They have been the hardest 6 years of my life. But I would not trade them for anything. James is truly the most amazing person I have ever met. He is my hero.
I'll update more soon, I promise! James is so excited about his Pirate birthday party next weekend, arrrrgggghhh!!!
Love & Prayers,
Maureen

Saturday, June 4, 2005 11:01 PM CDT

Sunday, December 19, 2004 10:19 PM CST

Hello All!
I know, I Know! I'm the worst Caring Bridge Mommy ever! I'm so sorry to have let so much time pass between updates! As always James is keeping me on my toes and exhausted! We have had so much going on here that I have not been online much at all and that combined with just plain laziness on my part has resulted in a journal drought, sorry!
Since I last updated we have gained much insight as to why James has been complaining of tummy discomfort. This summer he began telling me *quite* often "Mommy I have air in my tummy, please get it out, get my tummy tube!". I have been using his G-tube to get air out of his tummy constantly, sometimes getting up to 70 CC's of air out at a time, that's a lot of air for a little tummy. We saw his pediatrician many times and the GI docs as well but with no answers. James, as always, has been happy as a clam, until his tummy starts to feel bloated, which makes him nauseous and scared, I 'burp' his tummy with the tube and he is suddenly fine. He began asking me to burp his tummy so often that I even wondered if he was doing this for attention, I know, I already told you that I'm a bad Mommy! While driving one day in November, James began to yell about having air and insist that I pull over to get it out, he often will want me to pull over and burp his tummy which makes me wonder if he is also having some motion sickness. Anyway, I pulled over and get tons of air out, I cleaned him up, put the tube away and drove on, five minutes later he starts screaming again, so I pull over again and empty out his tummy, I drive on and three minutes later guess what? AT this point James is freaking out, he is screaming, salivating and spitting. Mommy decided to go to the ER, but not without stopping twice more to try to relieve his tummy. Daddy met us at the Walter Reed ER, while James is being triaged Fred went over to the Peds clinic and miraculously finagled an appointment there even after the ER tech had tried and failed, I think it might have been his flight jacket and big blue eyes, but I digress. We get in to see the doc and what does James tell him? "My tummy is all better now, no more hurtin" AAARRRGGGGHHH!!! Anyway, the doc talks to the GI team and they decide to do an abdominal x-ray as a precaution, even though his belly felt fine to the doctor, he had good bowel sounds and had been pooping regularly. After we get the X-rays and the doctor goes to see them he calls us back into his office to talk, uh-oh! They found something on the films! What is it, does he have a tumor? A growth? A GI Joe boot lodged somewhere? None of the above thankfully. But one thing is clear..............my child is FULL OF IT! It being POOP! The films show that James' entire colon and up into his small bowel were completely filled with stool. That would explain why he had been feeling bloated for the past few *months*! So we go home armed with Miralax and scratching our heads because the kid had been pooping like always, just apparently not enough. After over a month of meds, two weeks of missed school and lots of poop tales that I will spare you, James is getting better. He was on elephant sized doses of laxatives for a time, we have been able to taper back a bit but he is still on a rather large dose of Miralax. James still complains of air in his tummy but it is much less often and I don't have to burp his tummy several times a day most of the time. Aren't you all so thrilled that my long awaited update is about such an enthralling subject matter?! Well, I guess those of you still recalling the cat snot update are not too surprised ;-)
So now we are caught up to December. Last week we returned for a wonderful week in Disney World, as always it was magical. James is such a Disney fanatic! We had a blast and we even got to go to Mickey's Very Merry Christmas Party and a Disney Vacation Club Party, where Minnie Mouse gave James a big kiss and everyone watching got a hug chuckle when James wiped his face afterwards, hee, hee. I'll put some pictures up from our trip soon. We can't wait to back in the spring and we're planning a trip to visit Mickey on Halloween again too, we went for Halloween in 2003 and it was sooooo fun!
Oh, I almost forgot that James had his sleep study done at Children's hospital in DC on Thanksgiving, we don't have the results yet, but hopefully soon.
I'll update again very soon, I promise! James is so excited about Christmas, every time he acts up he gets paranoid and asks over and over if Santa knows that he has been good this year, he is so cute!
Love,
Maureen

Sunday, December 19, 2004 10:19 PM CST

Wednesday, September 29, 2004 11:19 PM CDT

**check out a few new links**

Hello Everyone,
It's been an action packed week already, and not in a good way! James has come down with whatever I have been fighting the past few weeks, I thought that I had allergies until Fred and James started coughing too. Sigh! James had a great weekend last week, starting out with a sleep over at Bambi & Pop Pop's on Friday night while Mommy & Daddy went to the Air Force Ball. Then Saturday morning James got to go to the National Zoo with Bambi & Pop Pop, he had so much fun he didn't want to come home with us when we went to pick him up, he was so exhausted he fell right to sleep in the car on the way home. Sunday he had a fun day helping Daddy wash the cars and playing outside with his buddies. He was perfectly fine at bedtime, but when I checked him about an hour and a half after he was asleep, he sounded like he was drowning. He was wheezing and struggling in his sleep to clear the crud that had suddenly appeared. We woke him up and he told us that he was 'not OK' , he sounded just awful and could hardly talk. So off to Walter Reed we went to the ER. We got right in with no waiting and by the time the doctor came to examine him he had clearly all the crud out that he had been struggling with. But given his really bad lungs the doc had us start a course of steroids. So home we went and we gave him his steroids through his G-tube when we got home and we all got to bed at around 3 AM. Fred slept down in James' room to keep an eye on him. Monday James was still coughing, but feeling OK in general, but from his past experience the coughing was scaring him, poor buddy. He told me "Mommy, I don't like these coughies one bit!" Amen to that. Tuesday James was sounding better and we were thinking that we may not have to do the whole 5 day course of steroids, but Wednesday he sounded worse so more 'roids it will be. Hopefully things will clear up Thursday! James is bummed out about not being able to go to school at all this week and not being able to play with his friends. But he has started a new family tradition by setting up his Toy Story Yatzee game every night to play with Daddy, one time he let me play too :-)
I'm feeling like absolute crud myself, I'm stressed out about James being sick, I hate him being on steroids so much. The steroids make him so grumpy and emotional, another Caring Bridge family calls steroid time "the Big Eat & Scream" so true! I can't seem to shake this bug that I was so hoping was allergies, I hate that James caught this from me. I guess we can say that cold and flu season has officially arrived at our house. Fred and I will be first in line to get our flu shots this year so we can do what we can to protect James. He cannot get a flu shot because of his egg allergy, and with his lung disease he is extremely high risk. So if you are reading this--get your flu shot! And don't even think about coming in my house without washing your hands! And if you have even just a sniffle--stay away! Thank you, the following message brought to you by the Germ Nazi, otherwise known as James Patrick's Mommy :-)

Thursday, September 16, 2004 0:47 AM CDT

Hello Everyone,
Sorry for not updating sooner! Things have been hectic as always and I've been stressed out. Not stressed for any particular new reason, but I guess anxiety is kind of a hobby of mine now ;-)
James is adjusting well to his new DAFOs leg braces. Meaning that he wears them without complaint and likes to put them on himself even! He is however, getting major bruising from them around the back of his calves and the back of his knees. Because he has 'toe walked' up on his toes for so long due to spasticity in his calves, he tries his hardest to keep on doing it with the braces on even though they make it impossible for him to move his ankle past 'neutral' , in other words, he cannot point his feet at all and his ankle stays at a 90 degree angle for the most part. It is especially evident when he tries to walk fast or run, he bends at the knees a lot to try to get up on his toes. He of course doesn't complain about the bruises, but he doesn't complain about much of anything, unless the cable TV goes out then all bets are off!!
The DAFOs don't seem to be helping much with James' stamina as of yet. His legs seem to tire out after a few aisles of shopping. James has gone through such a growth spurt over the summer and now with the leg braces on, it is impossible for him to fit in a shopping cart seat anymore. It's the end of an era! So unfortunately I have to have him sit in the big part of the shopping cart when we go to certain places, but he is great about staying put and sitting on his rear. I'm amazed when I go to stores and it looks like most kids are doing shopping cart gymnastics, sheesh!
The other 'trouble maker boy' in our family, Fuzzboxx the cat has been under the weather lately. He spent all day on Tuesday in the kitty hospital having tests done and his teeth cleaned and thankfully all his tests came back looking good. He has had chronic sinus problems and so they flushed out his sinuses and apparently the Vet and his aide had never seen so much snot come out of a cat in their long careers, ewwww. I'm sure that is just the kind of info you all came to James' site seeking ;-) Fuzzboxx is still really pissed at us for subjecting him to the Vet but he is doing great and should be with us for a long time to come. James had been so worried about his buddy Fuzzy, we really thought he was a goner, but now that he is in the clear James is back to tormenting poor Fuzz.
On the first of the month James' Corbett grandparents moved back to their home in DC. Yippeeeee!!! We're all so happy to have them so much closer! James was thrilled to go visit for a sleep over (without Mommy & Daddy) last week. He could hardly wait to go and visit the elephant statues that flank the entrance on the Indian Embassy, which is just a few steps from Bambi & Pop Pop's back door. When James was a toddler he became so enamored of these elephants that he would drag anyone and everyone over to see them, hee, hee. While James was visiting the pachyderms Mommy & Daddy (AKA Maureen & Fred) slipped away for a night at the Capitol Hilton to celebrate out eighth wedding anniversary. We had a nice dinner then walked down to the new W.W.II memorial, it is really beautiful, it is a wonderful tribute to those who served, including James' great grandfather.
We're continually amazed at the number of people that have been visiting this site. It's only been up for a short while and already so many friends and family have stopped by to check on James' progress. We're also so blessed by the number of people that we don't know that have stopped by and signing the guest book with such wonderful messages! We hope you all will continue to check in on us, James absolutely loves it when I read him the guest book entries, so thank you all so much :-) We're even featured on the famous 'Julianna Banana's' http://www.caringbridge.org/canada/julianna/index.htm site this week. Wow, James has hit the big time! We've 'met' so many other Caring Bridge families and kids that are such inspirations. All our special kids are such fighters and incredible blessings.
Check in on us soon and I promise not to mention cat snot again :-)
Love,
Maureen ~ Proud Mommy to James Patrick

Friday, September 3, 2004 0:46 AM CDT

Hello All,
Wheeewww, it has been an exhausting week! We've been to Walter Reed twice and we have yet to get out of there in less than three hours because we always have to make so many stops.
And in between all these appointments, James managed to loose his second tooth! The tooth fairy brought him a Mickey Mouse wallet to keep all his money in, he was awestruck that the Tooth Fairy knew that he had seen that very same wallet at Walmart and she knew he needed it! Amazing huh? James says that he thinks his friend Spencer (14 months old) must have been the one to tell her :-)
Tuesday, James had a physical with his regular pediatrician. Since we are so often in the doctor's office for one thing or another it was a bit strange to do all the 'normal' stuff like a hearing test and vision test. James had trouble getting the concept of the hearing test (earphones on with a button to push) and he had a hard time pushing the button down, so he raised his hand every time he heard a sound instead and he looked so cute. Then onto the vision test where he cannot name the letters of the chart, so they do an alternate one and he did great. His weight almost floored me.........drum roll please......................**48** pounds! This is a kid that has been considered 'Failure To Thrive' for most of his life and has a feeding tube! Amazing, he is doing so well with his growth, we're so proud of him :-) Also on the agenda for Tuesday was a visit to the case managers office, she let us know that James' sleep study will be scheduled soon. And then we went to the Orthodic clinic to see Mr. Tim who is making James' DAFOs, for his legs. We made arrangements to come back to see Mr. Tim on Thursday. Tuesday night I had to make yet another trip to the ER, kitty ER this time! Fuzzboxx is sick, but hopefully on the mend.
Wednesday was action packed as well since it was Daddy's birthday! Wooohooo, Happy Birthday Daddy! James got his Daddy a Kermit DVD and some Homer Simpson boxers, hee, hee :-)
So that brings us to Thursday which was also James' first day of school. He is in the afternoon class this year and so he was only able to stay for an hour today because of all his appointments, grrrr. He is so thrilled to be back with Ms. Bonnie, who has been his teacher for the past 2 years as well. He has all the same therapists at school and he knows every kid in his class already. I picked James up and reminded him that we had to go back to the hospital and he let me know that he has 'too many doctors Mommy!', sigh. First stop was to see Mr. Tim and see the DAFO's he has been working on, we decided that we will call them "Super Shoes". James tried them on and while Mr. Tim worked on the adjustments, we headed downstairs to see James' pulminologist, Col. Paterson, who is a favorite of James :-) James did his first Pulmonary Function Test and he loved every minute of it. He got to blow into a thing hooked up to a computer so that on the screen he was blowing out birthday candles or being the big bad wolf and blowing the 3 little pig's houses away. He did well for a kid with lung disease. Col. Paterson said that he did not expect James' BPD (lung disease that vent dependent preemies develop) to go away ever, but that he would improve. So we are to keep with the same medication (inhaled steroids twice a day and Singulair) regiment and see him again in 4 months. We were downstairs for so long that by the time we went back up to see Mr. Tim he was gone, but he left James' braces for us. We headed to the car to go home and I cried the whole way home, James was thankfully engrossed in his Rescue Heroes video. So we brought them home and tried them on and thank goodness they fit inside his Dr. Martens boots perfectly! So James took them for a spin outside and played ball with his pals next door. He did great, he walks well in them but it looks like he is bending his knees more to try to get up on his toes, physical therapy to the rescue! So to sum up, James loves his braces and he wanted to wear them to bed 'so that my legs will not hurt anymore and be all better'. And my heart broke when I saw them, they looked so big and bulky and 'appliance-like'. Now it is completely obvious at first glance that James has special needs, or whatever you want to call it. He is completely oblivious to this, but other kids his age are not. I don't want other kids to stare at him but I know they probably will and this kills me. Because of my beautiful boy I will do what he has taught me and keep fighting, and instead of complaining I said a prayer when my heart was breaking today and thanked God for every second I have had my sweet boy. I believe that God does not make mistakes and James has had to overcome so much for a reason. He is an amazing kid and when I had him just over 5 years ago I thought of all things that I would teach him, I never knew that it would be him that has taught me more than I could even imagine.
Love & Prayers,
Maureen

Friday, September 3, 2004 0:46 AM CDT

Tuesday, August 24, 2004 0:13 AM CDT

Hi there everyone!
Well, we have returned home from our trip to Savannah, Georgia to visit Fred/Daddy at 'airplane school'. Fred was in Savannah from August 1 until August 27. So James and I drove down on August 9 and came home on the 18th. We had a great time, James and I moseyed around the city going to all our favorite places while Fred was in class during the day and then we all had fun in the evenings going to fun restaurants and going for a horse carriage ride once too. James' favorite place to eat in Savannah is the Pirate House, which is a really neat place where real pirates used to hang out back in the day. But James also had an absolute blast at the Crab Shack restaurant on Tybee Island where he got to feed real live alligators! It is a well known fact that James wants to be the next Steve Irwin and he even uttered 'crickey!' when two gators fought for one of the gator treats James offered. It was a lot of fun and James was so excited!
James and I had to make a pit stop on our way to Savannah, Walter Reed Army Medical Center of course! James had a long awaited ENT (ear, nose & throat doc) appointment on the 9th so we packed the car and went there on our way southward. The reason for this appointment was to discuss the possibility that James is having obstructive sleep apnea. James was sedated for a brain MRI earlier this spring when he stopped breathing, so it may be that his tonsils and adenoids are cutting off his airway when he sleeps. So we met with the ENT to discuss this and the possibility of having his tonsils and adenoids removed. The appointment went OK I guess, the doc said that there is sufficient cause to remove his tonsils and adenoids. However, I'm not big on putting my child through another surgery just for the heck of it, so I told the doctor that I would need to see some proof that he actually needs to be under the knife once again. Thankfully the doctor saw the wisdom in this and ordered a sleep study to be done on James. This will be done at Children's Hospital in DC, but I do not have a date yet. James will be hooked up to all kinds of instruments and machines that will observe him as he sleeps.
The day after we returned from Georgia we missed Walter Reed so much that we had to go again. (By the way it is ridiculous that the valet parkers there all know us!) We had to go to the Prosthetic and Orthoses clinic there for James to be casted so his ankle foot Orthoses can be made. James was so apprehensive about getting casts put on again because he was so terrified of the cast saw. We even called in reinforcements and James' wonderful Godmother, Gerry, was there with us in case we had to hold James down. But thank God they did not have to use the saw on James this time!!!! They quickly applied plaster casts to his legs, they dried super fast and they used a neat blade to take them right off, James was so relieved and so was Mommy! They will now use the plaster cast to make a model of his legs to make the Orthoses from. So we go back to that clinic on August 30 to be fitted for the braces they are making for James' legs.
As you can see from the new picture here we had a momentous kid rite of passage while we were in Georgia! James lost his first tooth, and we had no idea one was even loose! I have had a great deal of anxiety about James' health lately, not because he is particularly ill right now, just Mommy Post Traumatic Stress from all we have been through. So James' tooth falling out left me having my own little panic party. We were having a very nice dinner one night and I was making sure James was chewing his food well when I saw that one of his front teeth on the bottom looked strange, I had him open up so I could have a closer look and I saw that his tooth was just about to fall out. At this point it does not even occur to me that this is perfectly normal, all I can think is "Oh my gosh, now his *teeth* are falling out!" I had to leave the table to compose myself and while I was gone Fred popped the tooth right out. James was fine with all of this and getting excited about the tooth fairy already. I came back to check out the new hole in his mouth and I see that the tooth next to it is really loose as well. I had to call my Aunt Mary, former dental hygienist, to talk me down and tell me that it is while it is early, it is within the range of normal that a kid will loose teeth at 5 years old. Wheew! I'm still marveling at how such a 'normal' kid thing could throw me for such a loop! I'm such a dork! James even sensed that I was upset and told me "I'm sorry I lost my tooth Mommy, I won't do it never again." Is this kid sweet or what?! So now I have Mommy guilt for freaking out so bad. I should start a collection now for the therapy that James will need because of this incident later in life! Oh well, at least I know that the second tooth will be out soon and it won't catch me so off guard, lol!
So that is what is going on with us these days. James is excited to be going back to school soon. He wants to tell all the kids in his class about feeding the alligators :-)
Until next time.................

Love and Prayers,
Maureen ~ Proud Mommy to James Patrick

Friday, August 6, 2004 0:40 AM CDT

And they're off!!!!!!
The casts are history! It was sooooo much harder than I thought it was going to be! I completely underestimated how difficult having a 45 pound kid in two leg casts would be! The first time James tried to walk into the bathroom by himself he learned really fast that casts and Pergo do not mix! I had to carry him up and down our three flights of stairs and to the bathroom all week. Whew it was not easy! James had a lot of difficulty walking with the cast shoes on, with the casts and the shoes it added at least 3 inches to his height so his center of gravity was way off and he had trouble balancing. He was so determined to walk up on his toes that he figured out how to do it with the casts on and the toes of the casts would actually bend! He still has a lot of bruising around his calves where the top of the casts dug into him from walking on his toes. James was so terrified of the cast saw that he did not want to get the darn things off. Fred is out of town, so I had my brother, AKA Uncle Mahcull, meet us at Walter Reed to help. Good thing he was there because it took four people to hold James down so the ortho tech could saw the casts off! Man was he screaming! He now also has marks on his arms from us holding him down because he fought so much, poor buddy he was not happy. But he recovered quickly and was soon pleased to realize that he could move his legs :-) He was a bit shaky at first but he was walking around well before we left the hospital.
Getting the casts off was only our first stop at our second home, also known as Walter Reed Army Medical Center. After the casts were off and the green vapors of stink coming off James' feet calmed down, we headed across the hall to see Dr. Morrow. He is the surgeon that performed James big "three for one surgery special" back in August of 2002. James had a hiatal hernia repaired, a Thal Fundoplication and his feeding tube placed all at once. We wanted to check in with Dr. Morrow to discuss the bleeding problem James had back in June. We really can't be sure that it won't happen again, but hopefully we won't see a repeat. Dr. Morrow also noted that James has a bit of granulation tissue around his G-tube, this is when the body knows that there is a hole in it and so it sends up extra skin cells to try to close the hole, granulation tissue around a G-tube can cause the stoma, or opening for the tube to leak and become irritated. So he got more Silver Nitrate sticks to burn off the granulation tissue, he also have us some topical numbing cream to treat the area with before burning the tissue off. So far I have been procrastinating in actually going through with this plan because I know how painful and scary it is for James, but I know eventually it will need to be done, volunteers are welcome to hold down a screaming and freakishly strong kid while Mommy burns away extra tissue, sounds like fun right?
After we saw Dr. Morrow it was time to head upstairs to see James' case manager. I was dreading this because as they say, "the squeaky wheel gets the grease" but I've also found that the squeaky wheel also makes few friends in the case management department ;-) But today our case manager was very helpful. I need to appeal the fact that James was denied for a special needs stroller (the one we are using is a generous hand me down and extremely heavy) even though his doctor and physical therapist wrote the order for one, grrrrrrr! We really want to get a simple umbrella style one for quick trips so we'll see how that goes. We also had to have the case manager order a new G-tube so that we have a spare if we need it.
Next stop, Dr. Foster, James' Physiatrist who treats his CP. Dr. Foster is the doc that does the Botox shots and ordered the casting. He was thrilled at the progress James made from the casting! James' flexation in his ankles has improved by almost 5 degrees, that is huge! So I was so thankful that the merits of the casting were proven and it was worth the struggle. SO now that James has made such improvement, we have to make sure that he retains it. The way to do this is by having James fitted for DAFOs. Which are leg braces called, Dynamic Ankle Foot Orthoses. Check this website out for more info :http://www.dafo.com/products.asp_Q_pagenumber_E_157_A_dirid_E_18_A_subnavid_E_26
Hopefully we can have him fitted soon and that the process for getting the braces made will go well. Then I suppose we will have to tackle the 'getting him to wear them' part, ugh! So we then headed over to the Orthodics and Prosthetics Lab where sadly we were the only non-amputees in the waiting room. Walter Reed is where all the war wounded come after being overseas, and it is so heartbreaking to see all these young guys so badly hurt. James is beginning to notice as well. Anyway, turns out that both of the guys that do the fittings for the DAFOs are overseas now, so we'll see what happens with getting him fitted, I'm going to see if we can do it out in the civilian world so we can get it done sooner rather than later, I want to make sure James doesn't lose any of the ground he has gained.
Well, that concludes our day at the hospital. James is doing great and enjoying being able to run outside with his friends again. He keeps telling me how happy he is to have his casts off, and he never complained about having them on at all.
There are pictures of James getting his casts on in the photo album now, I tried unsuccessfully to post them last week, but they finally went through.
A huge thank you goes out to all that took the time to leave messages in the guest book. It really means a lot to us and James is thrilled when I read him the messages every morning. You all have written such sweet things that always make us smile, THANK YOU!
Love,
Maureen ~ Proud Mommy to James Patrick who still has seriously stinky cast feet!

Tuesday, July 27, 2004 11:09 AM CDT

**Update Thursday, July 29**
Well I must admit that I completely underestimated how hard it would be with these casts on! James has not complained one bit, but Mommy is groaning! I've been trying to keep James busy so today we went to the National Zoo and he had a ball. If we are home I have to constantly yell at him not to walk around. He is so determined to walk on his toes that he bends his knees and gets to walking the way he usually does. The casts have bruised the back of his calves badly, and when he gets up on his toes he actually bends the darn things! But he has been an angel, he is amazing! My back is complaining loudly! I'll update more later, check out the new photos!

Tuesday July 27.....
Hello out there! Sorry this update is overdue. It has now been one week since the funeral for my grandfather, James' great grandfather, and life is starting to get back to 'normal' whatever that means! The services for Pop Pop were wonderful and sad and moving, he was a wonderful man who lived his life with such joy. My mother, James' 'Bambi' had been maintaining a vigil by Pop Pop's bedside during his last week with us. She came to spend the night at our house one night after being with him all day and we got the call from the nursing home that Pop Pop had passed away. The strangest thing about it was that James woke up screaming bloody murder that morning and was out of his mind scared about something, he came into my room and was trying to tell me something through his tears. He finally climbed up on my bed and was instantly fast asleep again, very unusual for him, it was about 6:30 AM and he is NOT an early riser. He was not even asleep for 5 minutes when the nursing home called. I didn't really think much of it until my Mom said that James had woken up screaming right when Pop Pop died. Weird huh? James spent a lot of time with his great grandparents and he really loved his Pop Pop :-)
Anyway, due to all the whirlwind of activity surrounding the funeral and having lots of family in town we delayed James' casting last week. But yesterday was the big day! James now has below the knee fiberglass casts on both legs. His legs have been casted as part of the treatment for Cerebral Palsy. The first step in the process is the Botox shots, which he received a little over 3 weeks ago. ( You can look at past journal entries for more info on that.) The casts are put on to help get the maximum benefit from the Botox shots so that his muscles will stretch out and loosen up. One cast is camouflage patterned and the other has stars and stripes :-) So having an active kid in casts has been an experience, and it hasn't even been 24 hours yet! He is doing great and has a great attitude as always. A few people have given him goodie bags with puzzles and things and some new toys to keep him busy, everyone has been so sweet :-) He can walk OK if he is on the carpet in our house, although the kid is so determined to walk on his toes, as all kids with spastic Diplegia CP do, that he bends at the knee and will get up on the toes of the casts even though he can't bend his ankles! He has some cast shoes that Velcro on but they make it very difficult for him to balance, so it looks like I'll be carrying him to the car and stuff like that. At least we have his special needs stroller to use for outings, we are supposed to be getting another special needs umbrella stroller to use, but so far no word on that. James has been wonderful with the casts, his only complaint was when the ortho tech had to use the cast saw on both feet to cut out around his toes to make them walking casts, the heat from the friction of the saw scared him and he though he was being burned, so he screamed at the top of his lungs because he got so scared, we had to hold him down and I hate doing that. There was a little girl coming into the cast room just when he started screaming and she looked so freaked out because of him, she must have thought we were cutting off his toes or something!
Anyway, James will have the casts on for 8 days, he gets them off next Tuesday and he also has an appointment with his surgeon then. He finally got an appointment with the ENT and we will see him on the 9th of August.
That's all for now, thanks to everyone who has signed James' guestbook, he loves getting new messages, so if you've signed once before he'd love to hear from you again, and if you haven't signed, what are you waiting for ?! :-)
Until next time...............
Maureen ~ Proud Mommy to James Patrick

Wednesday, July 14, 2004 1:00 AM CDT

Hi everyone!
Sorry is has been so long since my last update, we have been busy as always!
Fred and I (AKA Mommy & Daddy) had a great trip to Savannah, but we missed James so much! But he had so much fun with his Bambi & Pop Pop that he didn't even want to come home! While James was visiting with Bambi & Pop Pop his limp got much better and he was not complaining of any pain, not that he usually would even if he was, grrr! His wonderful Physiatrist, Dr. Foster was away and not able to see James until July 7th. We went to see him and told him all about James' limping, x-rays and pain, he is scratching his head too! He wants to see James immediately if it gets bad again, but James conveniently has these problems when Dr. Foster is out of town and I don't think he wants to take James on vacation with him :-)
James received his second treatment of Botox shots on July 7th and he was not happy about it at all. James now knows that when someone says the word 'Botox' it means they are talking about 'little pokes' and he will immediately get upset, use the sign for 'stop' and tell us to be quiet! Poor buddy, he was so scared to get his shots that when Dr. Foster went to set up James hid under the desk and would not come out. I got him out and it took three people to hold him down while he got his injections. He screamed and thrashed and begged us to stop, he pleaded "Mommy please make them stop, I don't like this, NOOOOOO!!!!" Needless to say this broke my heart. I hate that I have to hold him down while strangers poke at him and do painful things to him, he doesn't understand. He screamed so much that he has petechiae all over his face again. I was up by his face when the first shots went into one leg, but then he was thrashing around so much that I had to go and hold his legs down and he couldn't see me. He thought that I had left him there and it made him scream even more. It was just awful, even though the Botox has helped him so much I hate the thought of having to do this to him every few months indefinitely :-( He does know that since he had the first Botox treatment his legs have not been hurting him at night, but so he doesn't understand why we have to do it again since he thinks it is all better. Sigh!
James will have both of his legs put in casts next week, it is a process called serial casting and it is done in conjunction with the Botox shots to get the maximum benefit from the Botox. The Botox has done wonders for James so far, but unfortunately it is temporary, we will have to continue the shots every few months. James has always had some stamina problems, because of his Cerebral Palsy the spasticity in his legs makes him tire out fast. The Botox works to paralyze the spastic muscles which helps James tremendously with the severe muscle spasms and cramping that has plagued him at night ever since he could walk. Unfortunately the paralyzing effect also means James still has stamina problems, just for a different reason now. It is hard for him to admit when he is tired, but after normal kid running around play he is limping and toe walking pretty noticeably. So we use a special needs stroller for a lot of our outings because the kid is just too big to carry anymore! He is growing so much and looking like such a big boy now! And today he said some words that at one time I thought that I would never hear "Mommy, I love to eat!" remember this is from a kid that has a feeding tube and had to have 2 years of very intensive feeding therapy to learn to eat! Yipppeeee!!!!!!!
This week has been a difficult one for our whole family as my Grandfather, Roy Harper, James' Great Grandfather, and our beloved Pop Pop has taken a turn for the worse and will not be with us for long now at all. We don't expect him to last the next 24 hours. James and I and very close to him and he is the sweetest man on the planet. Please keep him and our family in your prayers, James is very sad that Pop Pop will be leaving us soon and this will be very hard on him. Pop Pop has 7 children (one of which is James' Bambi, and my Mother Rita) 18 Grandkids, and 15 Great Grandkids (James is lucky number 13). We have alot of love in our family and we are so sad to see our Pop Pop leave us. I'll keep you posted when I can. I'm going to try to post a picture of James with Pop Pop. Until next time.................

Love,
Maureen

Friday, June 18, 2004 10:43 PM CDT

Hi there Everyone!
Well, James went back to the doctor on Thursday to see if we can figure out what is wrong with his leg and why he is walking so funny. (Check out the past journal entries for more on this.) He had more x-rays, 15 (!) of them to be exact. He had x-rays done to both feet, legs and ankles and both hips. He was twisted on all different angles to get different views, he was an angel as always. Especaily when the Tech doing the x-rays told him that Buzz Lightyear had recently had the very same x-rays done! Imagine that ! He couldn't hold his foot in the correct position because the CP makes him a bit jumpy in his feet and legs so I think they got a few films of Mommy's fingers holding his leg into position :-) And boy does his feeding tube look weird on an x-ray, it looked like he had swallowed a wrench, hee,hee!
Anyway, we returned to the pediatric clinic to wait the results of all the films. Instead of waiting for the report, Major O'Brien (the chief of the peds. clinic) and Captain Schwartz (the doc we had the appointment with) walked down to Radiology to look a them first hand. Major O'Brien's husband is the Radiologist so I know that they went over them well :-) With four people looking over all the films they couldn't find any evidence of any fractures. This is good news, but it still doesn't tell us why he has been limping!
James has finally begun admitting that it does hurt him and he will point to his Achilles heel, on both feet. Yesterday he woke me up saying that his hips hurt him, I think they hurt because he has been walking so funny for over a week now. It breaks my heart that he doesn't understand that pain is not normal, he is so used to something hurting him :-( But as usually he does not complain! He is amazing! And the limp has not slowed him down any, it makes me want to tie him down if it would make him stop running! He runs even with his funny walk so he looks almost like he is skipping!
The Pediatricians put their heads together and came up with a theory as to why he is in pain. They think that he may be experiencing some rebound from his Botox shots that he had to loosen him up. They think that the shots loosened up the muscles that have always been so spastic and that now that the Botox is wearing off and the muscles are tightening again, it is causing him pain. It would certainly explain the major increase in toe walking. Of course James' Physiatrist that treat his spasticity has been gone all week, so hopefully he can clear so things up for us when he returns.
Mommy and Daddy (AKA Maureen and Fred) are going to go on an unaccompanied trip next week for 5 days without our little buddy! We are excited but we also know that we will miss James so much! He will be staying with my parents or as James calls them 'Bambi & Pop Pop' so he will have a blast! Fred went to the JAG office on base the other day to get a medical power of attorney for them in the likely case that James will need to have medical care while we are gone. Hopefully Dr. Foster can clear up the mystery of the limping boy next week. Thanks to everyone for your thoughts and prayers! James also really loves it when people sign the guest book, hint, hint ;-) Until next time................
Maureen, Proud Mommy to James Patrick

Sunday, June 13, 2004 10:18 PM CDT

I'm going to leave James' birthday party journal up for the week, but I wanted to update on his leg also......
Tuesday June 15...
We think James may have fractured his left leg. I swear this kid is trying to kill me! He started walking funny last Thursday, no too obvious, but he was walking up on his toes on his left leg when he steps. But because he toe walks somewhat because of his CP it was not really alarming. Friday his teacher asked me about it because she had noticed too I repeatedly asked him if his leg hurt, if he had a boo boo, but he says no! Saturday he was running around all day during his party and his funny walk began looking more like a limp, he was still telling me it didn't hurt, but he couldn't explain why he was walking funny. By Sunday it was even more noticeable so I got up early Monday morning to call the doctor. First I called his Physiatrist, he treats James' CP and he does the Botox shots. He is out of town all week! So I called the ped clinic, his doc had no appointments but they gave me one with someone else. So yesterday afternoon I took him in to be seen, the doc could clearly see something was wrong, if he doesn't walk on his toes with his left leg he will limp badly like an old man. So she sent us for x-rays. We got the x-rays done and James was very disappointed that he didn't get to look at them too. We waited in the peds waiting room for them to be read. Major O'Brien who is one of the chiefs of the peds clinic has known James since he was a baby came out to talk to us. She tells us that there is nothing on the x-rays, but that he still may have a fracture. She said that sometimes with little kids it is hard to see a fracture on an x-ray until the fracture starts to heal and then they will see evidence of a healing fracture on the film. So she send us home with instructions to give it a few days and see if it gets any better. Today when I woke James up his limp was worse and he finally told me that it was hurting him! He has been limping around for 6 days and he wouldn't complain about it! He also told my neighbor that it hurt when she was watching him so I could go to the funeral today. So poor buddy finally admits that it hurts :-( He has such a high pain tolerance because of all he has been through it makes me sad :-( Anyway, I'm going to take him back in for more x-rays on Thursday to see if they see any evidence of a fracture. He doesn't have any swelling, he has a bruise on his foot, but honestly he has bruises all over his legs from being a boy, so I have no idea what happened! Fred and I are supposed to be going away for 5 days next week and James will be staying with my parents so I'm hoping we can get some answers before the end of this week. Stay tuned! It is never boring around here!

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Hi everyone!
James had his 5th birthday party on Saturday after having to postpone it because he was so sick the week before.
He chose to have a fireman theme this year, and those who know me know that Mommy tends to go a little bit overboard with the theme :-) Hey everyone needs a hobby right?!
James' birthday parties have always been very important to me. Every year we have a big cookout at our house with tons of family and friends. It is my way of really celebrating James and all he has accomplished over the last year. Last year I really threw myself into it to try to make it extra special for James because his father was serving in Afghanistan and couldn't be there for his birthday.
This year I wanted to make sure he had lots of fun because he has had such a hard time lately especially with his recent hospitalization. I think I succeeded, James had a great time!
As I said, it was a fireman theme and our local fire department sent over a truck with a few fire fighters and let the kids get on the truck and check everything out. When James saw the truck coming around the corner he started jumping up and down with excitement. He was so happy he was yelling and cheering, it almost made me cry seeing him so excited :-) I had the video camera running and I can't wait to watch the tape! I thought that the kids would just sit in the truck and look at the stuff on the truck and that would be the extent of it when they told me that they would let the kids squirt the hose too! Wow, all the kids were in heaven! I'm still so thankful that the fire department came over just for the asking, they were so gracious and even insisted that we did not need to make a donation, but we did anyway to support them, they do so much for our community.
My brother is a volunteer fire fighter in a nearby county and he brought over his gear for the kids to try on. Those helmets are so heavy! James put "Uncle Mah-cull's" gear on and went crazy with the hose, apparently he thought that Mommy's shoes were on fire so I got a thorough dousing of my feet! All the kids took turns squirting the hose, and all went well until Kaleb, James' buddy that lives next door, he must have though that I was on fire too because he doused me from head to toe, it was so funny!
James got a lot of nice gifts and the house has been alive with all kinds of new electronics sounds, hee, hee. I made him a special cake since he has a severe egg allergy, and he actually ate some! He didn't eat anything else during the party, until he and Kaleb figured out how to work the M&M Machine, lol! I found them under the table frantically stuffing their faces :-) Thankfully he did drink a lot during the party, he left a trail of juice boxes in his wake, and I was able to get him to take some Pediasure before bed too.
Health wise James continues to surprise us! Since his recent illness his voice has been extremely raspy. He is no longer coughing and seems to be back to normal, but his voice has not recovered, I wonder if he may have injured his vocal cords during his extremely forceful coughing? And for the past 5 days or so he has been doing a strange limping thing when he walks. He is walking only on the toes of his left leg and occasionally completely up on the toes of both feet. His gait has always been a little abnormal because of his Cerebral Palsy, but the way he is walking now has me worried, he really appears to be limping. When I ask him if his legs hurt he says no, but unfortunately he is so used to being in pain that most things don't bother him :-( But clearly his legs are bothering him. He has been doing so well since he started Botox injections too! I'll get up early Monday morning to make an appointment with his Pediatrician and I'll call his Physiatrist about his legs. But even though is legs were bothering him he would not stop running around during his party! I thought I would have to tie him down! He slept like a log and we had to wake him up at 10:30 this morning. He was sleepy all day and I tried to get him to nap to no avail, oh well! He's sleeping well now and hopefully he will sleep in a bit tomorrow cuz Mommy is worn out! Until next time, keep your fingers crossed that James' voice and legs are all better soon, I'll post an update in a day or so. Check out new pictures in the album!
Love,
Maureen ~ proud Mommy to James Patrick, a big 5 years old!

Tuesday, June 8, 2004 0:33 AM CDT

~~HAPPY BIRTHDAY TO JAMES~~
Wow, I can't beleive that my baby is five years old. June 7, 1999 was truly the start of the rest of my life. Five years ago we did not know what the inside of a NICU looked like and we never knew how to properly 'scrub in' for 3 full minutes. We did not know what an oscillating ventilator was, or CPAP. Billi lights were new as were feeding tubes and warming tables. Five years ago we did not know what BPD meant or Spastic Diplegia. I never knew the differnce between a Mickey and a Bard Button feeding tube.
Over the last five years I've learned that Tinky Winky really is the weirdest of the Telletubbies and that everything, including the furniture, on Blue's Clues can talk except for Blue the dog, how weird is that?! We now know that Stanley is the coolest show on the Disney Channel and not to cuss out other drivers in traffic. I've also learned that a child that will eat nothing willingly will toss back cat food like its popcorn. I also know that waiting 2 years to hear a little voice say 'MaMa' was totally worth it.
Five years have brought much heartache, but much more joy. When things are really bad, it makes the good so much sweeter. Knowing James is like glimpsing a little piece of heaven. He never lets anything get him down and always approaches everything with such excitment. His eyes draw strangers to him constantly, and he charms everyone he meets. (Unless of course you have a beard, in which case he will call you 'Saddam') He has made me a better person and shown me that I'm stronger than I thought I was. I'm the luckiest Mommy in the world and I love my little buddy with all my heart. Happy Birthday Boo, we love you!

Thursday, June 3, 2004 9:31 AM CDT

Hello Friends and Family,
I created this site to keep everyone informed about all the happenings in James' world. Check back often for updates!
James has had a very rough week. It started when he woke up on Sunday morning with a slight cough. I thought that it was just his allergies acting up, but by Monday it had gotten alot worse. Monday night he was up frequently with lots of coughing. I gave him some breathing treatments in the wee hours of the morning. He woke up on Tuesday morning at 6 Am with a fever and still coughing like crazy. He was coughing to the point of retching, which is very scary for him because he cannot vomit, so when he retches it is extremely painful for him and just terrifies him. I gave him some Tylenol through his G tube to try to bring down the fever, but as soon as I did this he began having stomach cramping and major retching, so I had to use the G-tube to take all the meds back out and that seemed to help. We called the Peds. clinic at Walter Reed so we could take him in to be seen and we hurriedly packed up and got in the car. Fred was driving and I sat in the back to comfort James. We were sitting in traffic in I-95 when James began retching and having stomach pain again, so he asked me to get the air out of his tummy, I acessed his tummy with the tube and bright red blood came out into the tube. At this point James became really lethargic as if he was losing conciousness so we were absolutely terrified and Fred drove like a bat outta hell in rush hour traffic, on the shoulder and everything to get James to the nearest ER. The closest ER was Holy Cross hospital and we arrived there practically on two wheels screeching into the ER. We were just panic stricken thinking that we might be losing our precious little boy. James did perk up once we got him into his exam room and we had a wonderful nurse taking care of him. The nurse used his G-tube to put some sterile water in his tummy and then drain it back out to see if there was more bleeding. Soem more blood came out of his tummy, but it was older blood and not a huge amount so the nurse and doc there felt that where ever the bleeding had come from, it had stopped.
The doctor taking care of James at Holy Cross called James' surgeon at Walter Reed to confer with him about James' bleeding, fundoplication, and g-tube. Our fear with the bleeding in his tummy was that he may have torn the area of his tummy that has been surgically altered to prevent reflux. James had this surgery, called a fundoplication, performed in August of 2002 at the same time he had his g-tube placed and his hiatla hernia repaired. Since it has been almost 2 years since his fundoplication they felt that it was not likely to have been damaged from the coughing and retching.
The doctors at Holy Cross decided to send James home after a little while and we are instructed to start a course of steroids to clear up the coughing and inflammation in his lungs. James has had respiratory problems since birth, so a course of steroids is nothing new to him. We gave him his first dose of steroids while waiting to be discharged from Holy Cross. As soon as we put the medication in his G-tube he again began having stomach cramps and retching so we had to take it all back out. So the docs decide not to let us go home and they started an IV on James and sent some blood for more tests. James had a few sips of Apple Juice by mouth and that caused him stomach pain and retching as well so we had to take it all out of his tummy via the G-tube to give him some relief.
At this point the doc at Holy Cross is at a loss and frankly I think a bit afraid of James' many issues, so they decide to transfer James to Walter Reed for further observation. James was so excited to take a ride in the "Boo Boo Bus" (ambulance) that he named the "James-mobile". I got to ride in the back with him and he was so wide eyed in his excitement and he didin't want to get out when we arrived at Walter Reed!
We finally arrive to Walter Reed, which was our initial destination to begin with! James was checked into the Pediatric Ward, where there are lots of familiar faces and he even had the same nurse that he had last time he was an inpatient there.
Once settled in, James was able to tolerate a few sips of juice without any problem and he even ate a few of his beloved Pepperidge Farm Goldfish with no problems. The docs at Walter Reed confered with their GI doc there and they belive that the cause of James' bleeding was that the 'mushroom' piece of his tube that holds the G-tube in place against the inside of his stomach, became irritated from all of James' coughing and retching and that it dug into his stomach lining a bit and caused the bleeding. The other theories to the bleeding were that he may have simply broken a small blood vesel from all the coughing or that he could have irritated the piece of ectopic pancreas that James has caught in his stomach tissue (that is such a long story!).
So once the doctors were satisfied that the bleeding was explained and now stopped, James just got some IV fluids and tried to get some sleep. It was a truly awful night for him. I stayed at the hospital with him while Fred went home to rest. James was so exhauseted that he slept fitfully and had a few episodes of uncontollable coughing and crying that he just could not get himslef out of. It was really awful as I tried to give him a breathing treatment to calm the coughing but he was so agitated that he couldn't tolerate it. James woke several times during the night with his whole body racked with coughing, it was so hard on him, poor buddy.
On Wedsnday morning James woke up doing a tiny bit better and still tolerateing oral liquids and some tiny bites of food. James had a few visitors from other parts of the hospital and he enjoyed showing off his IV and dramatizing his 'little poke'. It is crazy when we are in such a huge hospital and every one seems to know James from his many visits to several of the clinics there!
On another note, being at Walter Reed is quite an eye opening experience because that is where all of the war wounded from Iraq get cared for. To see all these young guys missing their limbs and learing to walk on prostetic legs is both heartbreaking and awe inspiring. All those guys are so brave.
To get back to James, last night they decided to relase James and we arrived home with lots more medications and new stuffed raccoon that his nurse at Holy Cross gave him that James has named Scratchy. I was really nervouse that he would have another bad night, but mercifully he slept very well. He is still coughing, and it sounds awful but it is not as frequent as it was even yesterday. He has been able to eat some small meals and lots of little snacks and he has done welll. There has been no further blood in his tube and we are so thankful that he has pulled through once again.
James was suppoed to have his fifth birthday party this weekend, but we have decided to postpone it until he is a bit stronger. Thanks so much to all of you who have kept James in your prayers, he really needed them this week.
Love & Prayers,
Maureen, Fred and James Patrick :-)

Tuesday, May 11, 2004 0:00 AM CDT

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