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Saturday, December 24, 2005 3:07 AM CST
Wow! I can hardly believe its Christmas Eve. Time just flies anymore. I hear thats a sign of old age. I like to think of it as being just a bit more seasoned than others AND, we do know that all things are better with seasoning! :0) I keep pinching myself to make certain I'm not dreaming. Yes we are in fact home....Yes he is in fact feeling well and YES we have seen MANY Christmas miracles! Let me repeat that... MANY Christmas miracles. This past week has just left me speechless. So much love for one small boy. I just can't express how thankful I am for the kindess that has been shown to my sweet Jophie. He has recieved some beautiful Christmas cards. I've hung those all around his bed so he can enjoy them. Jophie and I would also like to thank the Tumbleweed Foundation for their generous gift and we'd like to thank another dear friend who has asked to remain annonymous(we will be respecting that wish). Your kindness has went above and beyond. You along with the Tumbleweed Foundation has made it possible for Jophie to have the best Christmas ever! Thank you both from the bottom of our hearts! I have one last Christmas miracle. As you all now these special kiddos have many needs not covered by insurance and Jophie is no exception. In fact, he has many needs that are beyond my reach. I have come to accept that these needs will be met only when God chooses. I struggle with this often wanting to provide and trying to always "fix it" my way.....I finally had to just hand it all over to God. I still find myself forgetting and jumping in there to take over BUT, I've discovered when I leave well enough alone he sure can handle these situations so much better than I PLUS, I could do without the extra stress....LOL OK I'll keep you waiting no longer I have this group of girlfriends. 500 ladies to be exact from the Boutique Designers and Buyers Board on ebay. Pretty big group eh? These girls have shown so much love towards Jophie and I. They've gathered him up and adopted him as their own supporting us through all of Jophies ups and downs and let me tell you there are many. They've never waivered nor backed away. They are always standing along side us regardless of the circumstances. On the 19th Jophies life was changed by the girls on that board with their heartfelt act of kindness. I awoke to find a Christmas greeting to Jophie and I from those very ladies. That Christmas greeting turned out to be much more than I could have ever imagined. Unbeknownst to me they had been working like little elves behind the scenes and they managed to raise enough money for Jophie to have a new stroller type wheelchair! OMGoosh! Have you ever gotten one of those surprises that absolutely blindsides you? You know the kind. You never even saw it coming and now nearly a week later I am still numb and continually pinching myself to make certain that I'm STILL awake! It's amazing to me the lives my sweet Jophie has touched AND he continues to leave his mark on the hearts of so many. Now all we have to do is pick out a chair then they will purchase it for us and ship it our way! I've been researching nearly every day and talking back and forth with OT's, PT's, Peds, and ortho. We are trying to decide which chair will best suit Jophies needs as well as be safe, comfy, and practicle. It is still going to take a bit of time to sort through it all but soon enough he will be stylin in his new wheels! Did I mention his old chair has been broken for quite some time, his insurance has refused to pay for a new one because its not been 5 years and, its not only unsafe but doesn't even fit properly in the van creating an unsafe transport anytime we take him anywhere. We are hoping this stroller style will not only fit in the van but will also fit with him seated in it AND facing the right direction allowing him to ride securely like he's supposed to. To all Jophies aunties of the BDB board: Jophie and I would like to thank you girls from the very bottom of our hearts. Thank you for loving him. I'm so looking forward to this new year and to witness how God continues to move mountains for one small boy. Welp I need to scoot as I am baking cookies, candy, and other yummy goodies to fill some baskets for gifts. Gotta get those things finished and YES I am doing all this at 5:23 a.m.! Eeeek! Please continue to remember Jophie in your prayers. Your continual storming of those gates for my sweet boy is so much appreciated and needed! Please remember those families who are celebrating this Christmas without their little ones and those who this may be their last. To all of our Caringbridge family: Jophie and I would like to thank you for your love and friendship this last year. Thank you for standing by us even when things were tough. We both want to wish you a VERY Merry CHRISTmas and a Happy/Healthy 2006! Trina(Whose still looking upward and leaving it all in Gods hands) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Sunday, December 11, 2005 4:49 AM CST
Gosh its almost 6 a.m. again.....About 9 more minutes to be exact. Ugh! I'm almost finished with Jophies tube feeding. One more dose of meds and he's good to go until 9....Gosh thats only 3 hours..Ugh again. Can you tell I'm sleepy? No nurse tomorrow till after 7 p.m... so I'll just have get my lazy butt up eh? LOL Jophies snoozin which is wonderful. We're still using the Novasource and unless its my imagination "I think" he's getting used to it. YAY! He still has the occasionally tummy problems but nothing like when he first went on it. Well he officially can not go to the bathroom on his own now. About every 3 days we have to help him. We've found on this new formula if you go beyond the 3 days he gets so sick to his stomach SOOO we are right on top of things! Thank goodness for that dry erase board or I'd never remember anything! LOL I still have to phone those people who are spose to come work on his chair. I thought I'd wait till after Christmas right along with waiting on the next steroid decrease. Gosh I hope all this stuff I'm putting off doesn't push the little guy over the edge when he's faced with it all. I just hated making him miserable since its very rare he gets to spend time at home during the holidays. I am so thankful for this time we are getting together. There are no words adequate enough to express my feelings right now. I'm just so thankful. Over these last few months my love for Jophie has grown so much. I didn't think I could possibly love him any more than I do but, that love continues to gain strength...Almost to the point it hurts. Yes I think I love him so much it hurts. I'm sure many of you out there know exactly what I'm feeling. Did you check out that adorable little elf at the top of the page? How cute is that!? I just love his expressions. I'm working on another pic but I'll leave you hangin in suspense on that one. Lets just say momma has to get her creative juices flowin to overcome all his obstacles. You know The wheelchair, all his tubies, the fact he can't sit unassisted, and on and on....SOOO to say momma has to be a bit creative in taking his picture is a major understatement at the very least! LOL Speakin of cutie pies. Scroll up top and check out those 2 cute mugs of Easton and Louie! Clean Scans folks...YEP you read that right..Clean Clean Clean! Aren't they just the most handsome little guys ever? It's amazing to me how far they both have come. Please continue to pray for them as they have such a special place in my heart. I have a few other little guys who could use your prayers as well. One of my ebay loopies little cousin is just beginning his journey with ALL and right now the little guys immune system is shot and he's got a viral pneumonia among other things. Camdenlooper is his name. He has one of the new pages. Also, another ebay buddy has 2 ill children. They are so much more involved than I can tell you here but if you could remember them their names are Ian and Aaron. That would be Ian in mn. An absolute angel on earth! Hmm anything else to tell? I'm workin on customs for my twin models. Business is slow and I haven't bought one thing for Christmas. I'm still luvin the Y. I just love swimming and I just can't tell you how much better it makes me feel. There is just so much stress and worry with these sick kiddos. You don't really realize it until you get a bit of relief and then rather than just rest a bit you practically collpase from exhaustion. Who knew a body could be so tired and not even know it? hehe Jophies medical trust will be established real soon. His insurance has just gotten awful denying so many necessities and I don't see it getting any better. As a matter of fact starting Jan. 1 it looks like it will get worse again. I'm praying we aren't affected to bad with this new governmental decision. These decisions just seem to keep hurting the most vulnerable. The very ill children, the old and the handicapped. If you ask me there's something wrong with that picture. One of my friends is working on a gospel sing fundraiser for this spring to try and offset some of his medical costs. Jophie LOVES gospel music so I'm hoping he can go to listen. I'll let you know more as I know more so those who are near could come join in the fun. It's gonna be a a great time I'm certain! Jophie needs a haircut so bad. I need to just wrestle him to the ground and get it done. After I get his hair cut, we are going to try and take him to see the Christmas lights in a park over in Kentucky. I think with it being outdoors and with the weather being cold there is little chance of getting exposed to anything. Santa also sets up shop amongst the decorations and lets the wee ones take pics with him! I want so bad to get his pic taken since his last pic with Santa was when he was 5, in the PICU on the vent. Santa was leaning over his bed which was cute and all but I can honestly say it's not the most promising pic to put in that baby book! hehe OK I have to go before its too late to sleep at all. Sorry this was all over the place but what can you expect at now 6:30 a.m.! eeek! I have to get some sleep! Be back soon! Stay safe and everyone make loads of memories this Christmas season! All our love Trina(Whose still looking upward and so very thankful) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Saturday, December 10, 2005 5:04 AM CST
Just a quickie to say I'm headed to bed as its 6:00 a.m. It took a bit longer than expected to get his sight updated. Will be back tomorrow evening at some point to catch you all up on us. Love you all! Trina and Jophie
Thursday, November 24, 2005 2:48 AM CST
Can you believe it's Thanksgiving already? Well it's nearly 4 a.m. so officially it is just waiting for the daylight hours.....LOL I can't even begin to tell you how thankful I am on this day. Jophie and I are home and more importantly he is doing well. I have such a wonderful family and so many dear friends and that includes my Caringbridge family. Thank you all for sticking with us. I know its a rocky road but it sure makes the road seem alot smoother when you don't have to walk it alone. :o) My turkey is in the oven and smelling so yummy. The whole Thanksgiving meal and its smells is so comforting to me. I love watching the Macys Thanksgiving Day parade too. Can't wait! Today we had snow. It just peppered down. It looked like we were in a snowglobe and someone was shakin us up! LOL...It's warmed up now and its started melting but it sure was pretty and I can safely say that knowing were not buried in it with no hope of digging out....Don't you worry..My tune will most assuredly change the moment we do get buried in snow. :O) Jophie is still doing well on the Novasource pulmonary...He's still having tummy troubles. The nurses and I have worked round the clock fiddling with drugs and trying to get those tummy pains under control or at the very least come to a happy medium. It's very important that we get some sort of relief as this formula is helping his lungs so much. Please continue to pray we can come up with a good combination/solution to help with that tummy. Welp I need to scoot as I'm toasting bread to have it ready to fix the dressing tomorrow... Thank you for your continued prayers for my sweet Jophie Have a Happy Thanksgiving all! Trina(Whose so very thankful on this day) and Jophie(Who continues to rest in the loving/healing arms of our heavenly father)
Monday, November 14, 2005 2:04 AM CST
Hello my dear family and friends. Thank you for your patience and a special thank you to our dear caringbridge friends and a few new friends I see scattered in the guestbook during our absence Thank you from the bottom of my heart for caring and again, I apologize for leaving you hanging. There is so much to catch you up on. I doubt I'll cover everything in one setting but will cover all the highlights for now Last you knew Jophie was recovering from another active pseudomonis, Mycoplasma pneumonia, C-diff not to mention the 20+ medications he was taking every 4-6 hours. Well, I'm happy to report the pseudomonis is now in a state of remission once again, the Mycoplasma is gone, the yeasty beasty is gone and yes the C-diff is gone! He has had a couple sinus infections that are now gone. I think that all merits a well deserved "WELL GLORY"! :O) On the medication front we are back down to Jophies basics of only 15 + meds. It is indeed a long list but I'll not bore you with that. The steroid game continues as we are closing in on the 25mg mark. For now I've promised him we'd hang out at 30mg till after the first of the year. I think he deserves a withdrawl symptoms free holiday don't you? Besides, he really has been protesting this last drop to 30mg so I think it will take till January to coax him into another drop. My plan is to use a sneak attack and hope he doesn't notice that missing 5mg. Yea right! LOL During this last month I've taken Jophie to see an pediatric orthopedist. I've been dreading this trip and honestly have put it off just so I wouldn't have to hear what I already know. You know that dream world where everything is perfect and if you just ignore certain things then they can't possibly exist. Right? You ever do that? Come on admit it.....You know you do. :O) Anyway, the visit revealed what I already knew. In one aspect it was nice to actually have the doc officially state what I have been saying for years especially since all the other docs disagreed with me. I love it when I'm right. LOL Jophie does indeed have Kyphosis rather than scoliosis. Well he in fact has both but the more prominant problem is being caused by the kyphosis. An 85% curve to be exact and you don't have to be an expert in Kypho or Scoli curves to know that 85% of anything is a "Kiss your Butt" curve. What does all this mean? The same thing its always meant. The more his body curves the more restriction is being put on his lungs and the harder it becomes for him to breath and in turn causing more pneuomonias and respiratory infections. Its a viscious cycle but just a part of Jophie. What can be done? For Jophie nothing. For a healthy child without all of these underlying problems and conditions. Surgery. SO, we accept yet another boulder on this Jophie road and begin busting it up. We may not clear this one but we sure can make a path to pass eh? What else? Ah another doctor visit. Denist to be exact. Is it scheduled? Nope not yet. Why...You ask? I'm in my world again pretending nothing is wrong. Never fear I am very aware...I'm just enjoying not having an "official" statement from those white coats that have letters after their names. LOL I just need to determine can it wait till spring so we aren't facing the winter germies. He can't be near a hospital while he is well. It would be suicide to bring him around those germ infested halls on purpose. Lets pray he can hold out and have this taken care of during the summer. I bet your asking what he needs to have done right? This is a very touchy subject for me so for fear of breaking my little "soapbox".....I'll give you the shortened version. Jophie had one oral surgery at age 2 because medication made his teeth bad. Over the years his baby teeth did not all fall out and are now bad and his permanent ones are coming on the sides. I haven't been able to brush his teeth since he was 7 years old which is making the problem worse. No, I'm not a bad mommy nor am I being neglectful. By not brushing his teeth I am saving his life. He would aspirate into his lungs and drown and or get a nasty infection. I can't brush them because his insurance won't pay for his suction tooth brushes. I can not afford 800 dollars a month for tooth brushes nor could anybody and thats just the tip of the iceberg. I've fought this toothbrush battle for almost 6 years not to mention the start of my battle the day he was born. Who would have thought medical necessities would be denied here in these United States? I'm tired of fighting and mad that he has to face yet another surgery because they don't care. The end This past month as been hard. I get denials all the time on supplies and medical equipment. Generally I average 1-2 per month. Last week alone I got 3. I'm tired of fighting and jumping through their flaming hoops to get Jophie what he needs. It makes me ill they don't care about these kids. Yes I'm bitter. I can't help it. This momma is tired. Am I giving up? Nope! I would NEVER, EVER give up on Jophie. I just need to breath if only for a moment. 2 weeks ago I joined the Y. It's the first thing I've done for me in years. 12 years to be exact. I'm feeling guilty already because I'm leaving Jophie and he can't come with me. I know I need this. Physically and mentally I'm at my lowest ever. I know YOU out there who have terminally ill, chronically ill, or medically fragile kiddos know EXACTLY what I mean. I'm only there 2 hours and I'm only about 20 minutes from home but I still worry. I try not to but its hard. Jophie doesn't just have a cold that will go away. It's a lifetime of worry and struggles that takes its toll. Nuff said! I need to go finish Jophies tube feed and meds. He hasn't slept well for about a week. His tummy is bothering him. I have no clue. I'm still trying to decipher where its coming from. I'm leaning toward steroid withdrawl but who knows. We did start a new formula about a month ago. I'm really praying its not that because its a special formula geared towards kiddos with lung problems. I really think its helping his lungs. Besides this has only been going on for about a week and he's already eaten almost 3 cases of the new formula. If anyone has kiddos out there with lung problems, is volume intolerant, or gets alot of infections you might want to try this. It's called Novasource pulmonary. I really have seen such an improvement in his lungs. This formula is sterile, has a hang life of 48 hours if using a feeding pump and, is supposed to strengthen and make the lungs healthier. It has extra protein, fat, and calories making it possible to eat less but still get the daily requirements and then some. One of the biggest things is it helps to inhibit the growth of all those "BAD" bugs that these medically fragile ones get. If you'd like any info about it just toss me an email and I'll be glad to share what I know. OK going for real this time. Thank you again for your support and prayers. Please continue to keep Jophie in your prayers. Pray all those germies stay away That he continues to get stronger That these tummy problems will subside That his insurance company would grow a heart and give him what he needs so his momma can stop getting 3rd degree burns from jumping through their flaming hoops And for me I have several unspokens All our love Trina(Who is looking upward and trusting him) and Jophie(Who remains in the loving/healing arms of our heavenly father)
Wednesday, October 12, 2005 4:03 PM CDT
Will be udating soon. Please be patient with me. For now Taking once second, one mintue, one hour, one day at a time... Trina and Jophie
Friday, September 23, 2005 5:35 PM CDT
We're still here. Still fighting bugs, still lowering steroids. We are down to 45mg and I wil be lowering him again on Thursday to 40mg. We need to get back to 20mg per day. It's going to take some time. Jophie is now down to one antibiotic. This last one should go through the end of September and the Diflucan we will continue for 2 weeks beyond the last dose of the last antibiotic. Some days he seems better and then others it seems as though he is still struggling. I really have no clue what to think at this point. One day my hopes are up as I see a high O2 sat and even consider begining an oxygen wean then just when I think "this will be the day", his sats fluctuate again. Today is one of those days. The Boutique angels auctions for the hurricane victims will continue through the end of this month. I believe we are either at $30,000 or very close. Yay Angels! You can find the auctions by searching Boutique Angels Charity on ebay. Please remember to say a prayer for the victims in the path of this new monser Rita. Ok short and sweet tonight as I just have no time. His schedule still remains quite demanding. Please continue to prayer for my sweet Jophie. I'm not certain these bugs are gone yet. Thank you for your prayers. All our love Trina(Whose resting in his arms) and Jophie(Whose resting in the loving/healing arms of the heavenly father.)
Monday, September 12, 2005 8:53 PM CDT
Grrr! Caringbridge just ate my entire post.. Grrrr growl! SO, lets try this again. Sorry for the delay but Jophies med schedule has kept me hopping. He had a follow-up with his pediatrician on Thursday and she was amazed at how well he looked from last week. He is indeed getting better but is not completely well just yet. He continues to rattle my nerves with low O2 sats. Just when I think I am going to wean his oxygen a bit he has a day or so of low sats with me working all day to keep them up. SO, for now I think we will cruise at 3 liters. This Thurday I plan to drop him another 4mg on his steroids bringing him down to 40mg per day. We need to get him back to his baseline of 20mg per day. Pray he can do this. Well things seem to be getting better down south for he victims of the hurricane. I do wish things could have went more smoothly for them but for now things seem to be moving in the right direction. We need to pray things continue to only get better and all the folks in charge get themselves on the same page and continue to help these people move forward and heal. The Boutique Angels are doing so well on ebay! I am so proud to be a part of some of the best ladies ever! Their hearts are pure gold. As of tonight our totals are now at $27,016.36! WOW! Can you say WOW WOW WOW!? Not too bad for a bunch of STAHM's kickin out our Boutique items eh? Just a reminder 100 % of the proceeds will be going to the hurricane victims supporting such charities as Operation Blessing, American Red Cross, Mercy Corp, Larry Jones Feed the Children just to name a few. The auctions will continue to run through the entire month of September. Just search Boutique Angels Charity on ebay or follow this link Boutique Angel Auctions If you are a designer and would like to join in our efforts just toss me an email. Again thank you all for you prayers. All our love Trina(Whose resting in his arms) and Jophie(Whose resting in the loving/healing arms of our heavenly father)
Saturday, September 4, 2005 3:10 a.m.CDT
Well you better grab yourself a cup of cocoa and sit back cause this is gonna be a long one :O) Oh where to begin. I think I'd like to start with directing your attention towards the nightmare happening on our soil. This hurricane has been devastating but what has happened after is absolutely unexcuseable. I am appalled at what has been unfolding as I'm sure you all are to. We turn away help from 20 countries....WHY? Because, our government says "We have it under control" ???? WHAT? I think not.....We hear they can't get to people because of water? WHAT? UM what about a boat OR how bout one of those nice amphibious vehicles are military have? Why not a bass boat, blow up raft, air bed, kayak, ANYTHING THAT FLOATS PEOPLE.....Take one at at time but just GET R DONE! I watch and listen to the doctors and nurses in the hospitals with no electric, no food, no water, and NO working generator since MONDAY.....They are bagging those patients on the vents for DAYS. Not minutes or hours but DAYS....I bagged Jophie for 10 minutes during a hospital power outage when he was on the vent 5 years ago. THAT terrifed me and that 10 minutes was FOREVER. Imagine doing it for days. I watch these people on roofs screaming, crying, jumping up and down waving signs...PLEASE HELP US.... Please see us....We are alive BUT we are dying. I shiver to think about another disaster of any kind. It could happen to you or me and watching this horrific event unfold sends cold chills as I imagine the very same thing happening unless something changes. I'm sick to death of listening about the stealing. LET THEM HAVE THE FOOD, THE DIAPERS AND FORMULA! We weren't feeding them so leave them alone....Sure there are some who are stealing other things. WHO CARES? They won't get far. Quit worrying about that garbage and rescue these people! OK, I'm stopping on this subject for fear I can't be nice. I'm hoping everyone is as frustated as me. SOOOO, LETS HELP THEM! There are many ways and here are a few. The Boutique Angels are once again storming ebay and what a storm we are creating! The auctions will be running through the entire month of September and to date our totals are at $11,758.60! GO ANGELS! GO ANGELS! Our auctions are supporting such charities as American Red Cross, MercyCorp, Operation Blessing, Feed the Children just to name a few and as always, 100% of the proceeds will be going directly to help the families. I also want to mention that many of the designers including myself are offering FREE shipping in our auctions. Go check us out! You might find something you like and in turn you will be helping all of our fellow Americans during this tragedy. To find us just search Boutique Angels Charity on ebay and let the shopping begin! If you are a designer and would like to join in our efforts just toss me an email. :O) Welp, onto Jophie now. We are home from the hospital so theres that! Now this part is lengthy but I don't know any other better way to do this than to just spell it all out. We came home on Thursday and ran into a couple little glitches on the way home...His feet began swelling and at the pharmacy it took 2 hours to mix his new meds....one med had to be formed into a compound and the other into a solution and the 3rd had to be crushed, mixed, and placed into capsules to make it more stable and effective..Sheww! The plan for now is to try all the new meds through his feeding tube rather than put a picc line in. I myself wanted a picc put in and then just let me run the IV drugs for the next however many weeks. We were all in agreement and then the ped on call got worried about infection. I agree its a risk with Jophie but his stomach is such a mess but, putting that many antibiotics on his stomach is just a recipe for disaster. If he has any probs or gets worse, we will go back outpatient and get the Picc line placed and do the bulk of the meds via IV at home. So, we wait and watch.. Today I am fiddling with the way I'm dosing him to see if I can alleviate the nausea. One of the antibiotics is making him sick. I think. It's so hard to figure which one but I'm fairly certain I've narrowed it down to the culprit. Speaking of medicine. Let me just say this medication schedule is absolutley overwhelming. I had to hang a dry erase board just so I could keep up with things. There are 20 medications at 9:00 a.m.! My eyes are indeed crossing! The official diagnosis is: He has a bilateral pneumonia in the base of both lungs. This would be Mycoplasma Pneumonia which is the better of the pneumonias to get if you had to have one. I'm thankful for that. He also has C-diff but I think I mentioned that one in my last update. He grew Pseuodomonis and Proteus Morabilis which is what we felt he was colonized with. I really hated seeing that as I was so hoping the colonization wasn't so. He also grew a new one called Providintia or something along those lines. I haven't gotten around to looking that one up just yet but I will in my spare time! LOL....One piece of good news is that he didn't regrow the Klebsiella that he grew 2 weeks ago! YAY! SO, of the 3 bugs he grew they chose the Pseudomonis as the one being active and are treating him for that one. Makes me shiver. I'm certain you all remember that is the bug that just about killed him last year AND when the bug didn't the antibiotics they had to use almost did, mainly the azactam. This time the lab found the Pseudo to be sensitive to Cipro and we're praying really hard as we try it. You normally treat Pseudo with 2 antibiotics so its a risk using only one. I'm praying and my hope is that you will too. He will remain on the Cipro for 14 days and then see how he acts. He will remain on the Flagyl for the C-diff for 40-50 days, the Doxicyline for the Mycoplasma for 30-40 days, the diflucan for the yeast and to prevent the overrun of it for at least 60 days AND the gazillion other meds he takes normally will remain the same. Shew!! I'm pooped just writing all this out! We are once again doing steroid reduction. We have been stress dosing him through this last week an a half bringing him back up to 60mg a day. I reduced him yesterday by 10 mg so I have him down to 50mg per day. I'm hoping in the next day or so to reduce him again by 5mg. Please pray he can tolerate this. Today his sat has not been that great sitting up but now that he's asleep in the bed its great. I'm wondering if the fluid overload is effecting that. Now onto some fun things! I wanted to say thank you to my dear friends The Social Graces on ebay for sending Jophie balloons while he was in the hospital. He loved them! Thank you girlies! FOR ME?! HEY! Get those down here so I can reach em! hehe Ahhh! Home at last and LOOK my balloons are here too! Hi, I'm Jophie. Whats your name? A HH! I'm so excited I can't stand it! More ballon fun! With love from all his aunties :0) I have some big thank you's to pass out! I promise to get some pictures posted of everyones goodies soon. Just give us a bit more time to recoup from this last hospital stay. To the little ones from the "Rainbow Fish Room" classroom. Thank you for the beautiful blankie you made. Jophie LOVES it! It really came in handy during this last hospital stay as he was sooo cold. That double thick blanket was just what the doctor ordered. ~~winks~~.... To Barbara! Jophie is now your biggest fan! Thank you so much for the box of Elmo goodies! Jophie LOVES Elmo. I hung the poster on the wall by his bed so he can see Elmo when he's lying in bed. He loves the little radio and all his other Elmo goodies too! To Jaclyn! A sweet 16 yo teenager who took the time to get to know one little boy and share some love. I must say I was impressed with your choices for Jophie hon. I believe alot of thought went into choosing just the perfect things that you thought he could enjoy. The Koosh ball is perfect. He loves moving his hands over it and its perfect for tactile stimulation. The Fraggle Rock music video is perfect! He LOVES music. The little puppy is the most adorable and has to be the softest thing I have ever felt! He's all snuggled up in bed with him right now. :O) Thanks so much hon. P.S....We loved your card and what a great artist you are. You did a great job on Elmo and his fish! ~~winks~~ To Krista: Thank you for the beautiful card! It's so cute and was very thoughtful of you! To the Angels of Destiny Thank you for the beautiful angel ornament. We appreciate the prayers for Jophie I think that covers everybody. I really need to go now as my eyes are indeed crossing. Can you believe I've sat down here about 4 times trying to finish this? Sheww! Please continue to pray for my sweet Jophie as he battles steroid reduction, an active Pseudomonis, C-diff, Mycoplasma double pneumonia, AND all these drugs on his tummy! Please say a little prayer for me as I administer this regimen of meds. Jophie continues to need me often so pray for my strength that I can keep pushing forward. We love you all and appreciate you more than you know. Trina(Whose being carried) and Jophie(Whose resting in the loving/healing arms of our heavenly father.
We still are having some feet swelling but the more he peeees the better it gets. Peee baby peeee! hehe..I called his ped an we think its IV fluid overload....THe meds wellll......I'm just thankful our local pharmacist who is privately owned by the way, has a chemistry degree! haha....He said CVS and Rite-aid would not and could not have mixed those meds.....
Sunday, August 28, 2005 3:59 AM CDT
We are in the hospital again.....He was admitted today.....Just not himself....sleeping....moaning...crying......loooow temp 93.7 .......Now 2 warming blankets, a double fleece blankie, winter thermal blues clues cap lined in fleece complete with ear muffs, water bottles made of gloves, and 13 hours later he is up to 97.2 ...Sheww!
Here's what I know so far......... Xrays showed a pneumonia.....CT scan was clear thank God....Blood has been drawn for all the goodies including cultures...Snot is being cultured.....Bug juice is hung and so far he has gotten 1000 mg of Rocephin and 300 mg of Clindomycin and right now is getting 100 mg of Doxycycline.......
Doxycycline was added because he tested postive for Mycoplasma...Couldn't take first drug of choice erythromycin.........They are keeping the other 2 antibiotics on board to make sure nothing else is brewing.....
Thats it for now......Will upate when I can and when I know more....
Please keep him in your prayers........Pray his body remains strong so he can fight this bug........
Wednesday, August 25, 2005 12:51 PM CDT
Well I have tried to update this several times but time is so limited. We are home for now. Jophie is still on antibiotics for a few more days. He got 5 doses of Rocephin via IV in the hospital and then we are finishing off with omnicef as a precautionary measure. The shadow that was on his right lower lobe in the first Xray did not show up on the second Xray which is absolutely wonderful news! His cultures did grow some nasty bugs as I feared plus he grew a new nasty one. I'm hoping it was one of those cross contamination/normal flora things. Today as well as yesterday he has just not been himself. Right now he looks like he feels awful. He's slept alot in the last 2 days as well. I'd be lying if I said I wasn't worried. I have no clue whats going on and am exhausted trying to figure it out. I'm stepping back and taking a breath and maybe things will become clearer. For now I appreciate your storming heavens gates for my sweet Jophie. Please pray that he's just going through a couple days of being in a funk and that he'll snap back to that sweet smiling Jophie we all know and love. One last thing before I go. I was absolutely heartbroken to read the news of Jacob Duckworth. He is an amazing child. I know they would appreciate all your support and prayers as they face these precious few days they have left. Thats Jacob FL We love you all Trina(Whose resting in his arms) and Jophie(Whose resting in the loving/healing arms of our heavenly father)
Thursday, August 18, 2005 2:22 PM CDT
Quick update: Jophie was admitted to the hospital yesterday. Will update with details hopefully tonight All our love Trina(Whose trusting him) and Jophie(Who remains wrapped in the loving/healing arms of the heavenly father)
Many have been lifting him up to the thrown since yesterday. We can feel it and there is no doubt in my mind those prayers are being heard! Thank you!
Sunday, August 14, 2005 4:14 AM CDT
Sorry for the delay. We've had a bad few weeks and still it continues. Not sure exactly as I'm still trying to pinpoint whats going on. Possibly and most likely once again steroid withdrawals...possibly blockage/impaction which also could be due to the latest decrease in steroids. I've had enough of watching him suffer. He has been on a slow decline since this last decrease. I've expressed my concerns to the endo...The last conversation I all but pleaded. The next time we speak there will be no pleading because I have as of today increased his dose back to what it was. If he does better then I'm right..If he does not then I was wrong. Either way I have to know and so far since I have increased I've seen some improvement. He is sleeping right now for the first time in days..no weeks....Since the decrease on July 8th, his schedule has been off...He is gagging/wretching almost non-stop/daily/nightly...His stomach is not emptying and I'm pulling off more than I'm putting in...His stomach hurts...He can't poo and then he has diarrhea which in turn causes a horrid bloody rashy mess......his body, muscles and bones hurts..He's kicking/screaming/whining/irritable and I'm certain he's lost weight...I'm only able to get into him about 1/2 of his daily pediasure intake...I'm having a time keeping up with the fluids as in electrolytes..I pull off all the junk that is accumulating on his stomach and then try and replace with the exact amount in pedialyte..This has to be done very slowly so I'm staying up pretty much 24 hours and giving him 35-40 cc per hour of electrolytes....I've suctioned so much his airway is sore/bleeding and so swollen that times I can not even clear it so he can breath which is more than frustrating to me and is horrible for him as he feels as though he's suffocating..He in fact is......His nose was horrible, swollen and a bloody looking mess but now it does appear to be healing AND that sinus infection still lingers I fear...I feel it certainly is a result of all the suctioning and his weakened immune system..I pray constantly it doesn't go into his lungs....His lungs are screaming for the amount of steroid we took away..I've had to increase his Oxygen and his breathing treatments AND in the midst of all this madness I'm supposed to maintain all his other body functions plus keep all his other regular meds moving...Jophie takes 14 medications a day which are around the clock not to mention I've been pushing extra enemas which are working only about half right now, glycerin chips which are working somewhat, and miralax which is working but causeing horrid stomach pains and diarrhea AND lets not forget the antibiotic for the sinus infection which is also causing stomach upset/pain and the dreaded yeasty beasty.....Imagine trying to get all the normal meds in when you can't even get his stomach to empty or absorb properly...It's a chore in itself and to say the least warrents stress dosing for Jophie and soon his momma is going to need drugs! For the last week or so I've been weighing the odds.....ALL of the above as opposed to giving back 5mg of steroid? It seems pretty simple to me AND thats exactly how its going to remain. Jophie was cruising along just fine until the reduction. I do understand this endo has never seen him before and she did need to see how low he could go ..WELL, I think he's proven he can not tolerate even the smallest of drops. Based on the way he's feeling, we would be stress dosing non-stop....OK so is that not stupid? Tripling his dose(EACH DOSE) to accomodate for the stress of being lowered down when in fact its spose to be temporary and only used for things like surgery, infections blah blah blah... He was taking 20 mg per day ...thats 5mg 4 x per day...We dropped him to 15 mg per day..thats 5mg 3 x per day....When we stress dose we are giving him triple of his dose which would be 5mg x 3 = 15mg x 3 times per day..That would be 45mg per day....Doesn't the original 20 mg per day as opposed to 45 mg a day sound more logical and much safer? I think we'll take the 20 mg he was originally on rather than all the other stress/trauma/increases and blah blah...Wouldn't you agree? I'm taking him to his ped monday as we need Xrays and or CT scans to make sure he doesn't have an ileus because of getting so backed up/make sure the stomach is not doing something diff. and or hasn't sustained any damage because of this, plus he may need another round of antibiotics for the sinus infection if its not resolved. I'm also going to request she do bloodwork to make sure all counts are fine especially his white/red and glucose. His immune system is horrid and I am absolutely terrified as the fall season begins to approach us. We so covet your prayers and appreciate all the love and support you give us. Please continue to pray for my sweet Jophie as we continue the steroid battle in hopes of finding a happy/comfortable yet safe and stable dose to remain at long term. Please pray for all his discomfort right now and for me that I can continue to put one foot in front of the other as he continues to need me for extended periods of time.... We love you all Trina(Who is being carried and most assuredly without could not do this without my heavenly father) and Jophie(Who remains in the loving/healing arms of our heavenly father)
Thursday, August 5, 2005 4:29 PM CDT
Well here it is 5:00 and believe it or not I'm getting a bit sleepy. Just a quicky to catch you all up and then off to bed before I miss this window. Jophie has another sinus infection so he has been keeping me busier than the norm. We have him on antibiotics again and I tried my hand at the steroid stress dosing. I did phone his endocronologist to make sure I did it right. Honestly it wasn't that hard and of course Jophie liked it! My little Prednisone Prince! :O) Earlier I think I saw a bit of seizure activity but not as bad as during the last sinus infection. His appointment with his neruo is scheduled for Aug. 31. We do need to touch base with her because its been a while. I also suspect since its been so long since his last EEG, that she will prolly order one. We shall see The followup to Columubus Childrens is still scheduled for September and I'm so hoping he won't catch anything since it will be closer to fall and all the germies. Makes me nervous just thinking about it. Welp, I need to scoot as I really need to sleep cause I have a gazillion things to do later today as well as a ton of phone calls to make. OH...Almost forgot.... I'm working on making the links available once again. I'm sorry its taking so long but my time is so limited. I've been trying for the last few days to change Jophies background and music and such and still haven't got to that! LOL...Ya know it is nice that Kim and Terri were able to get theirs back up! It sure helps when visiting our little friends but, I really wanna get ours going as well since we have a so many different friends from theirs. All those who have contacted me before to have their child added please toss me an email once again so I can give you the details and continue to include you and all those who would like to be added please contact me as well for the info. Look for all the pertinent info coming soon. Please continue to pray for our St. Jude friends. Please remember Jacob as they just recieved some heartbreaking news. Thats Jacob FL.... Thank for your continued prayers and support. Trina(Whose heading to bed I HOPE!) and Jophie(Whose resting in the loving/healing arms of our heavenly father)
Friday, July 29, 2005 3:29 AM CDT
Wow! It was so much cooler here today. I can't stand the humidity and Jophie really can't. We've had to increase his oxygen just so he could breath easy. We have central air but when its that juicy outside you feel the effects inside as well. It's actually chilly at 58 tonight but I'm lovin it!
We still haven't gotten to get into the pool. We now have a seal problem on the filter lid. I bought a new lid to fix the leak because the other one was cracked. It did the same thing last summer. So far it hasn't cracked again but its still leaking air around the edges so I can't vaccum. I did however figure out why its doing this.
The heat pounding directly on the lid is causing it to expand and as the canister expands the lid doesn't give and it cracks. In the evenings when its cooler it constricts and the pressure is releived so no leaking. It's stretched out of shape now and won't go back so alas, we now need a new pump. I'm hoping to get that taken care of in the next week or so. I want to get Jophie in the pool so bad.
We are still at the same dose on the steroids. Same mg and still 3 times per day. I'm going to call his Endo next week to catch her up with how he's been doing and get us both on the same page. We were supposed to drop him again to 2 times per day after 3 weeks but he's not going to be able to do it. My hope is that we can at least hold him here.
Jophie woke up a bit off this morning. Heart rate was up, sat was down, a bit sick to his stomach, and generally off. He had to go to the bathroom so we fixed up a pooey cocktail to help things along bit..He was feeling better later this evening. He's sleeping now and I'm feeding him and giving him his meds. I hope I can finish before 6 a.m.
Welp, I need to scoot. I have several bracelet customs to work on and I have a ton of ideas for fall/halloween floatin around in my head. I need to actually get some things ready while I'm able to.
Thank you all for your continued prayers. Please continue to pray that Jophies pseudo and proteus stay dormant, that he continues to maintain on the steroids and his adrenals don't get any worse as well as keeping all those other buggies away. Also, remember my unspokens if you don't mind.....I still have some insomnia going on but am trying to fix that.
Here's hoping to another 0 humidity day tomorrow! :O)
Trina(Whose most assuredly being carried) and Jophie(Whose resting in the loving/healing arms of our heavenly father)
Tuesday, July 19, 2005 5:53 AM CDT
We're here! Sorry for the long delay. Its just after 7:00 am here and I guess I have insomnia still. I'm heading to bed anyway to try and make myself snatch a few zzzz's before the day nurse gets here at 9:00. Lets see so much to catch you up on. We've weaned Jophie down to 3 times a day on the steroids and still keeping the same dose which has been wonderful in that I don't have to give the last dose at 3:00 a.m. BUT, I still can't sleep. I need to work on that one. His Endo specialist called last week and she is pleased so far with the reduction. I expressed my concerns in that he still is having problems with this drop and I really don't feel he can go any lower. He keeps dropping his Oxygen sat. She and I both feel his lungs are requiring the steroids as much as the adrenals so he will most likely be at this dose indefinitely. We are to touch base with each other every week so she can stay on the same page with his progress. She mentioned he might have to go back up to what we just dropped him from if he continues to drop his O2 sat. I'm praying he can hold right here. Jophies woke up at 6:00 all smiles which makes me smile as well. You just never know how he's going to wake up. That little booger slept nearly 16 hours BUT, that was to make up for the fact he didn't sleep at all the night before nor did he have the nap the day before that. I would guess he's caught up now! Well we have another neuro appointment. This one is scheduled for Aug. 31. I guess we'll see if this one holds or if they cancel for the 6th time...haha...The seizures are under control still so thats wonderful news! OH I almost forgot! The results of the bloodwork he had done at Columbus Childrens was awesome in that he doesn't have anything wrong with the pituitary gland nor the thyroid! YAY! SO, I guess his little brain is sending just enough messages to those areas to make things work right that way. I was so happy he didn't have another problem to deal with. He does have a couple things I know are going to have to be dealt with but I just get sick thinking about them. His teeth are needing pulled again. His first oral surgery was when he was 2 and during that time a few of the baby teeth were pulled, they were cleaned real good, fillings, seals, and caps were placed in the hopes the teeth could be protected till they fell out. Well, where he doesn't eat the baby teeth never fully came in and those temporary fixes are breaking down. ~~sigh~~ I'm going to have to call his dentist to get an appointment and I know its going to be another oral surgery which scares me to death. Any surgery is such a danger plus we risk infection again. The other biggy is his back. Its really in bad shape. His spine seems to run perfectly down the middle yet he has this horrible hump on one side. I think its more kyphosis than the original scoliosis that everyone thought it was. I'm not sure what to do about this. I know his wheelchair is making the problem worse and I also have been told he most likely wouldn't survive a surgery to repair the back. Quiet honestly I'm not sure what you could do since the spine is already straight. Ths over time is going to continue to make his breathing worse. ~~sigh again~~ I need to pray about these things. I also have a few unspokens if you wouldn't mind. There are many things right now that I just don't know what a good solution would be. I'm not certain there is a solution to a few things. Regardless, I just ask you say a little prayer for me. It's hard making such difficult decisions to begin with but to do them alone is even worse. I know whatever I decide on many of these things can and will determine either good or bad outcomes for Jophie as well as myself. I think probably I'm just a bit overwhelmed right now which is probably contributing to the insomnia. My mind is continually moving trying to sort out or come up with good answers. I need to remember that God is still in the drivers seat and I prolly should let him drive now and again eh? It's just hard sometimes when you want to fix something so badly but its not within your power. OK going now as I'm actually getting a bit drowsy. I just pray that drowsy feeling stays with me when my head hits the pillow! :O) Will update sooner next time. Things have just been busy round here. Thank you all for your continued prayers. We appreciate them so much. Trina(Whose resting in his lap) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Friday, July 15, 2005 5:37 AM CDT
Quick update: I'm just now heading to bed at almost 7 this morning. Jophies fine I just couldn't sleep. I'll be back later after I sleep some to do a full update! Now off to catch me some ZZZZZZzzzz's! Trina
Saturday, July 9, 2005 6:24 PM CDT
We're back!....We made it back late Thursday and was too tired to update...Slept like a log as did Jophie. Friday and today were lazy days still trying to get caught up. Thank you all for your prayers and thoughts. Jophie and I appreciate them so much. The trip down went well. We did get a bit off track and ended up taking us 5 hours to get to the hotel rather than 3 but no problems after that. We dumped the map that had a goof on it and printed out a new one so things went much smoother on the trip to the hospital the next day. Jophie traveled well down but his little body was getting so tired and sore as he's not used to sitting in that position for long periods. I managed to do all his tube feeds and meds while moving so that saved some time. He ran out of oxygen about 10 minutes from the hotel because of our little "offtrack" episode but I managed to do a quick tank change in the back seat! It was a trick to say the least as we were in the pitch black, moving faster than I like on a 4 lane highway in an unknown area, AND me trying to read the map and shout out lane changes and exit ramps PLUS was tube feeding Jophie with the other hand AND had a syringe full of steroid which is like liquid gold that I was trying not to drop!...LOL OK on to the visit. The hospital is so much bigger than last time we were there. Many additons have been added so finding the right area proved to be a bit of a challenge. We did however manage to arrive 5 minutes early which is a major accompishment for us no matter where were going! :O) We didn't have to wait long as Jophie was needing suctioned and his food and meds were due so I asked for a private area to take care of his needs and they said lets just go ahead back. YAY! ~~Makes mental note to always time his appointments during food/meds time. The doctor was nice and she really seemed to know her stuff. She said def. he has adrenal insufficiency. We knew that one. She also said that its not uncommon at all for a child with brain damage to be have the same problems stemming from the pituitary gland as well...So shes making sure hes not getting double whammied. He had some bloodwork that she said would tell her whether or not his brain is communicating with is pituitary gland and if not then he would also need thyroid replacement meds to compensate for that as well. The plan for now is to try another wean..ugh..She needs to see just how low he can go...sounds like LIMBO! how low can you go!? hehe...Anyway I started yesterday..well last night by accident...I fell asleep and forgot his last dose! So, I thought might as well start. The dosing plan is to drop him from 4 x a day to 3 x a day but keep the mg the same. Today hes only had 3 5mg doses of the cortef. We are to hold him there for 3 weeks and call her weekly and report his progress or regression. Next week I will find out about the results of the blood tests and whether or not he will need additionaly medication to compisate for the pituitary as well. After 3 weeks if he has done well then on week 4 I am to drop him once again to 2 x per day still keeping the mg the same and follow the same direction with phoning and such as the first 3 weeks. Then on Sept. 9th we have to go back for more bloodwork and whatever tests she feels is necessary and talk about a long term plan. If at any time he doesn't do well with these drops I am to go back up to the previous amount and leave him be. This will give her a baseline as to where NOT to drop him below. She also taught me stres dosing which he should have had the last 2 weeks during the breakthrough seizures and sinus infection. To stress dose I'm to take whatever the dose is hes on which is 5mg and triple it which would be 15. You give that above what they are taking as a base for 48 hours and then begin weaning by halfs on the 3rd day trying to get them back to the base. If they have problems go back up for 48 more hours and repeat process. Times I have to stress dose will be any illness, infections, pain, surgeries, dental work, procedures especially painful ones, hospital stays and anything that would cause him pain/stress for extended periods. So, this is where we stand now and I'm pleased. Granted I wish he didn't have another problem to deal with but we do so we accept it, learn to manage it and go on. He's always been a trooper and will adjust just fine with my help. :O) The trip home he did well until about an hour away from home. He got really uncomfy and agitated. His body was just tired and sore and he wanted to be home. Once we got home he settled down nicely and slept till noon the next day! haha I have some cute pics I've added to the photo section if you'd to take a peek. :O)> One of the funniest things I think was him riding with the seatbelt. I managed to get it on him and prop him with enough pillows that he could sit kinda on his own. He would look over at me and then out the window and then back. He just had this perplexed look on his face like.."Hey what am I doing? I didn't know I could sit up?" LOL Thank you all for your continued prayers. Please continue to pray for him as we do this reduction. He has been having some withdrawal symptoms ever since I have reduced. Not as horrible as before but still not comfortable. I will be working on his neuro appointment next week. The seizures for now have subsided and seemed to disappear right along with the sinus infecction. I think the seizure threshold was lowered due to the pain and infection not to mention we need to stress dose his steroids next time. Continue to remember all our St. jude friends and all those whose little ones are dancing with the angels. We love you all Trina(Who is looking upward and walking in his SONshine) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Wednesday, July 6, 2005 1:56 PM CDT
Very quick update: We are heading out soon to Columbus Childrens. We planned on leaving at 3:00 but we had just a bit of a delay. Jophies aid thats going with us took my van for her hubby to change the oil/filter and rotate the tires for me. Well I have no break pads at all so she is having to run and get some for him to stick on before we leave. I'm so thankful we found this before we took off. Ok need to scoot as I still have some packing to do, Jophie to be fed and medicated and bathed! SHeww! Will try and post from the hotel but if not I will post when we get back probably late Thursday or Friday day. Please pray for travel safety to and from Columbus....For Jophie to travel comfortably....For the doctor to determine the extent of the damage/cause of the adrenal gland failure and for me to be able to understanad what will be involved in his care and effectively learn to manage this long term. Thank you all for your continued prayers. We appreciate them so much! Trina(Looking Upward and Walking in his SONshine today!) and Jophie(Whose resting in the loving/healing arms of our heavenly father)
Tuesday, June 28, 2005 1:14 AM CDT
Sorry for the delay in updates. Jophie has really had a rough time over these last few days. He continues to have breakthrough seizures. We went to see his ped about 3 weeks ago. He had blood work to check the levels of his seizure meds. The tegretol at that time was 8.5....Normal is 4-10. This was not a fasting bloodwork so the numbers would probably be a bit lower had it been fasting. Regardless thats pretty much Jophies "normal" number. His ped increased his tegretol by 100mg thinking maybe his age and the onset of puberty could be causing the chemical change making him have these breaktrhoughs. He did GREAT on that dose for 2 weeks and then Boom! I started seeing more seizure activity slowly building and then eventually into the breakthrough seizures again. On Wednesday of last week we returned to her office and this time had a fasting bloodwork. This time the tegretol was 10.5 which is a smidge higher than the norm and indeed higher than Johpies "normal" of 7-8ish....OK so now what? We tossed around many possibilties. His age and puberty onset, pain, infection, no longer working for him......He did have a few symptoms which made me believe he had a big ole sinus infection SO we went with that assuming that the pain and infection was what was lowering the seizure threshold.... SO, she lowered his seizure med back down to the original dose, wants us to see his neuro, AND said phone her if the symptoms of the possible sinus infection gets worse. When he woke on Thursday that little nose was even worse. ICK...Bloody/crusty mess. Plus he had extra secretions. I also remembered a few nights before I had to increase his oxygen up to 3 1/2 liters..He normally hangs out on 2ish....AND had to give him some extra breathing treatments...Thinking back I bet it wasn't so much respiratory like I feared but rather the nasal passage being so swelled from the sinus infection that the oxygen couldn't get to this lungs. I called her office and she called in some Augmentin ES 600 which is a new one for us...Its a nice one with "extra strength" hence the ES.. :O) ...Its used for kids with recurrent/big/bad yucky hard to fight buggies...I guess that bout covers Jophie...:O) Anyway, we started that on Thursday. I also have been giving motrin around the clock as the seizures are much worse without the motrin....The motrin is NOT stopping the seizures however, I do feel its alleviating the pain which in turn helps the seizures come under control....Remember pain, fever, infections, and many other things can lower the seizure threshold... This past weekend he really felt rough especially on Sunday..I rarely saw a smile or even a coherent look. He seemed pretty zoned out with constant seizure activity all day. Last night I gave him Zofran to help him sleep as his sleep patterns have been worse since this onset..SLeep deprivation also can cause seizures so there was something else I needed to try and get under control for him....sheww! Tired yet? I sure am... :O) As far as the neuro goes welll......thats a big mess too. It seems since he has not been seen recently he is considered a new patient even though this neuro has seen him since he was about a year old. AND to make things worse he is no longer seeing children...UGH...OK so there is good news....While I am waiting to hear back from that office, we do have a pediatric neuro that came to our area I believe a couple years ago....I've seen her with another child so I'm familiar with her. So, I call his peds office today to see if they heard anything from the other neuro and if they could also rattle some cages at the ped neuros office. So far papers have been sent for a referral and I'm awaiting a phone call. The do feel it won't be this week that he is seen which really is causing probs in that we go to Columbus Childrens next week...That trip alone is going to be rough on us and Jophie let alone him having these seizures...Sheww.... On a good note...Today for most of the day he has seemed pleasant and more himself with only one dose of Motrin in the a.m....I still have seen some seizure activity but compared to yesterday very minimal...I'm going to make sure he sleeps well tonight even if I have to give him something... Well, I think yoru caught up to speed now! I need to scoot and finish his food/meds...Please pray we can figure out the cause of these new seizure developments and that we can come up with a solution. It worries me so much because Jophie doesn't have any spare brain cells to lose. Each seizure causes brain cells to die and we can't have that. The damage at birth took away many of his and now he needs each and everyone thats left. I'll try and touch base again before we travel to Columbus Childrens hospital. I'll have my laptop with me so I will be able to keep you up to date while we are there. Continue to pray for Jophie that all those big buggies will stay away, that the pseudo and proteus will remain dormant, that these seizures are treatable and will subside, AND for travel safety to and from Columbus Childrens. Sorry this entry was all over the place but, thats about how I feel. All over the place! :O) Thank you all for you continued prayers. We appreciate them so much. All our love Trina(Whose trusting my heavenly father with each step) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Sunday, June 19, 2005 1:32 AM CDT
Happy Fathers day Dad! I have the BEST dad in the world! Thank you for all you were to us kids as we were growing up and thank you for what you continue to be! I love you! AND to all those daddys out there Happy Fathers Day to you as well! Well can you say sleepy? That is exactly what I am sleepy sleepy. This weekend I've been without nurses which makes for a long weekend. I can handle one day but 2 I just about can't do. It's almost 3 and I'm so hoping I can finish up Jophie a bit early so I can hit the sack a little earlier. Jophie is still maintaining on his current dose of steroids. I hope we can get him in the pool at least one time. I just want to do something with him. Just one day that he feels well enough to brave the outdoors so he can enjoy what he loves best. The pool! You ever have about a million things to do and can't begin one? There are so many things that need to be done that I can't pick which one first so I sit and stare at it all. LOL OK funny story. I do wanna start by saying I have only done this one other time as an adult so don't laugh too hard. On the days I know I have no help I set the alarm clocks. Yes thats plural on purpose. I'm not sure what it is whether its age creeping up or just pure exhaustion. Could be a little of both I guess. Anyway, I did manage to get up but just a bit past 9:30 which is wonderful compared to last Sundays 12:30! ACK! OK fast forward. Jophie is fed and I am just about as excited as a kid in a candy store thinkin bout a 2 hour nap I'm bout to get. I get woke up by a pounding on my bedroom window. Thats how everyone wakes me up when the house is locked up. It's the only way to wake me. LOL It was one of the girls who work for me. She is the one who has been off for almost 2 years getting her LPN. Well I made this bracelet for one of her classmates baby. I need a wrist measurement but the mom didnt' get one SO the crazy thing now has to be resized. Anyway, we get that all settled and I"m thinking OK so I have about 20 more minutes before my alarm clocks go off again for Jophies evening food/meds. I'm just about to climb in bed and I thought I'd better hit the bathroom first as I had just taken my BP pill earlier and I KNEW I would be loaded as the water pill in it causes you to dump really soon after you take it. SO I'm on the pot minding my own business and I hear this crash. I'm sort of in a daze and can't seem to figure out first off where I am and second was someone breaking in or did something fall or what? OK so why am I dazed? WELLLLLL, (Don't laugh) ....It seems that the crash was my alarm clock that had vibrated itself off my bed. Why you ask is my alarm clock going off? Because it was 20 minutes LATER! I had fallen asleep on the pot! OMGoosh! ROFL! I have only done that one other time! I'm just glad I didn't fall off and crack my head! hahaaha I can hear all that laughter out there. Oh well I hope if you needed to laugh then I sure nuf gave you one. :O) I guess I'm going before the laughter gets any louder. :O) On a serious note lets not forget all our kids. Jacob is doing great after his surgery. If you wanna check on him toss me an email and I'll send you in the right direction ~~winks~~ AND Louies MRI was CLEAR CLEAR CLEAR! YAY! I haven't had a chance to update up top so I'll stick it her for all those who were wondering. Pray for Tom and Jennifer as this journey is taking them in a different direction. He updated on Bens sight but didn't fully disclose yet as did our local news. So for now I just ask you pray for guidance as they follow Gods will for their lives. Please continue to pray for Jophie that he remains stable on this steroid dose until we can see the specialist at Columbus Childrens. Pray also that the proteus and Pseudo remain inactive. We love you all and thank you for your continued prayers. Trina(Whose absolutely drinking up Jophies smile he keeps flashing me so much lately) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father.)
Monday, June 13, 2005 3:37 AM CDT
Friday June 17th UPDATE:
Well I made it back..Not that night but in the middle of the night none the less..:O)
Well we have an appointment and this one is for certain. We will be going to Columbus Childrens Hospital on July the 6th. The actual appointment is not until July the 7th. The news on the Ronald McDonald is first off its a new one and I guess there is a humongous waiting list. They won't even put you on until the day you are to arrive and still there are no guarantees.
The people I have been dealing with there at the endocronology department have been very nice and helpful. We spent a couple days talking back and forth on the phone making her aware of the special requirements we had to have and such. The good news is after she spoke to the RMH they said because of the circumstances and because of Jophies health, the distance and such, they offered us one complimentary night at the Marriott which is just 5 minutes from the hospital. Isn't that so nice?
We spoke the next day ironing out the details as Jophie has to have a non-smoking room, accessability because of his wheelchair, fridge for his food/meds, at least a microwave to fix his food at 3 a.m...AND I can tell you I'm not trapesing about in Columbus at that hour looking for a microwave...LOL
The other good news is Katy, one of the girls who works for me, she will be going with us! YAY! And Karin it was so nice of you to even consider going with us. Your so sweet hon. I wouldn't expect you to anyways because of the distance apart we are. However, if you were closer, I'd take be ringing your phone off telling you to pack those bags! :)
I was getting a bit nervous as Katy was my last hope. I had already exhausted everyone I knew..I was hating the thoughts of having to cancel this for the 3rd time in less than a week!
The traveling part we still have to iron out but so far tentatively we are going to see if he is able to sit in his handicapped car seat. He hasn't ridden in it since he was around 5 so I hope it will work. The one thing for certain is he can not travel locked into his wheelchair as the chair and he are both too big to fit in the van together...Thats one dilemma I have got to figure out soon.
Lets see what else? OH to clear up all the confusion from the guestbook. the Happy Birthdays in there are NOT for Jophie but for Jamie. Jophies birthday was in April. Jamies birthday is June 14th but has since been placed for adoption hence the confusion for those coming along later in our journey.
Jophie still remains stable and is still being maintained on the same dose of steroids. I hope we can find something out from the specialist. My guess is he is going to say his adrenals have failed. Maybe not but I think so. I haven't seen anymore seizures since last week so not sure what that little glitch was?
This week I better don my armor as I'll be fighting with insurance companies again. Does it ever end? Nope I don't think so. Oh well I guess it gives me something to do since I have all this free time on my hands. LOL
Well I need to scoot and finish up Jophie. Its 5:30 and will soon be light. I'd like to try and get at least a couple hours before our help gets here.
Thank you all for you continued prayers. We cherish them more than you know.
Love you all
Trina(Whose hoping to get some rest soon!) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Sunday, June 5, 2005 7:39 PM CDT
Quick update: I'll be back later on to update better but wanted to stop by and ask you all to pray for sweet Emma Graces family. I was heartbroken to hear she had earned her angel wings. I know one thing for certain. Emma Grace and Stanton are makin some noise in heaven right now! :O) We have Jophies appointment to see the Pediatric Endocronologist Speicalist all worked out including all the details I was worried about. Will catch everyone up later tonight! Until then thank you for your prayers! Love you all Trina and Jophie Did you think I was ever coming back? :O) Gosh lots been going on. Lets see where to begin? Well first off its been HOT HOT HOT today! Sheww! 96 and humid..icky! Jophie does not handle hot and icky very well. Thank goodness for our air or he wouldn't be able to breath. Well yesterday Jophies aide asked me if I had noticed any seizure activity. I guess she saw some eye fluttering and some general seizure activity in and around his face. Just as soon as she left he started. Thats the first time I've seen anything at all since this last increase of his Tegretol. His pediatriician said we could also increase the Klonopin if we have to. So far nothing today so I guess I just watch. I'm going to call her in the morning just to let her know whats going on and see if she needs me to bring him for bloodwork or do some adjusting. Columbus Childrens Hospital called on Friday. Endocronology scheduled him an appointment for July 25th or possibly August 1st. Well as we were talking a cancellation came in. So now we are scheduled for June 9th which is Thursday. I went ahead and took the appointment but I'm thinking I may have to reschedule. Well first off we have the travel issue. I don't feel at all comfortable driving with him when he can't sit in his wheelchair. I have his handicapped carseat and thats an option but we need to see if he can sit in it with his back. Second, someone HAS to come with me. It is very difficult to travel with Jophie not to mention the gazillion items we have to bring and 3rd......The nurse is trying to get us a room at the Ronald McDonald House so we can come up the night before as this is too long of a drive to try and make it there early plus he is going to be so tuckered. OK with all those obstacles they presented me with yet another. OK after all I have been told about the adrenal testing and such, this nurse proceeds to tell me that Jophie can NOT be tested unless he is off the steroids? What? Well the way it was explained to me was you can do fasting bloodwork, the ACTH injections, then blood work again and compare notes of the two....Depending on what the adrenals did in response to the ACTH would determine whether or not they are functioning even a little bit or not at all...... Well now this is a mess because we are stuck as far as weaning goes. To take him off the steroids would kill him so what do we do? She said it didn't seem to be a dire emergency as he appeared to be stable and we were maintaining him well. Well yea I know that BUT, for how long do we maintain him? She did mention he may never be able to come off them which I was aware of but I would at least like to know if they are making an attempt to function ya know? I'm going to toss this by his ped in the morning because my feeling is...IF they are not going to do anything then WHY even go? We can maintain and do bloodwork here.~~shakes head~~ a mess I tell you..... OH and guess what...I have been setting 3 alarm clocks to get myself up..Yea I know sounds crazy huh? I can NOT for the life of me get up. I have insomnia something awful on top of the fact I don't make it to bed till around 3-4ish anyways....OK so when that time comes I am NOT sleepy..I go and start sewing cause I figure I might as well be working right? I've been hitting the bed at 6 and a few times 7 and 8! ACK! Once the aide gets here I can lie back down and take a nap but on Sunday Jophies aide doesn't come till after church so I set the 3 alarm clocks..I didn't wake up till 12:15!! OMGooosh! His food and meds were so late not to mention I was scared out of my wits he was going to have a seizure since he was having probs anyways...UGH! SO, here I sit and am just getting ready to start his 3rd meal and meds and we are still about an hour and a half behind....Hopefully by the last meal and meds I can get him pretty close to caught up. Sheww! I need to scoot as I need to get moving on his food/meds.. Please remember all our little St. Jude friends. Did you read Eastons MRI and spinal fluid was clear!? YAY! Now we need to storm the thrown for Louie. His MRI is on June 14th so strap on that warrior prayer gear! Also, don't forget little emmagrace/ar. is still on the vent but has proven to be such a fighter! emmagrace/ar and her family would appreciate your prayers for their baby girl. Thank you for your continued prayers for my sweet Jophie and the sweet guest book entries. We love you all Trina(Whose enjoying his SONshine today!) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Monday, May 30, 2005 3:07 AM CDT
Just checking in for a second. The Boutique Angel auctions are still up and running. They will be running through June 6th. 100 f the proceeds will be going to The Center for Missing and Exploited Children this time. Boutique Angels Charity The Center for Missing and Exploited Children You can follow the link or type in Boutique Angels Charity in your search. Jophie is just about asleep. He should be finished withi his food/meds in another hour or so...I'm still not certain if we will be able to go to the parade. At this point I'm just going to be thankful for some sleep. haha I'd like to take a moment to thank all those who have been fighting and continue to fight for our freedom. I will never forget what you have done for us. I'd also like for you to remember all those families whose little ones are dancing with the angels. Here are just a few of our friends. As you look at each sweet face, please say a prayer for these families on this Memorial Day. They do miss their babies terribly. Trina(Whose still resting in his arms) and Jophie(Who remains snuggled in the loving/healing arms of our heavenly father) 
Gotta run. Thank you for your continued prayers.
Tuesday, May 24, 2005 1:12 AM CDT
Hey all The Boutique Angel auctions are doing very well and just as I promised here is a link to the auctions. Boutique Angels Charity The Center for Missing and Exploited Children You can follow the link or type in Boutique Angels Charity in your search. 100f all proceeds will be donated. I still don't have mine up but will be working into the wee hours I'm certain for the next couple of days to get mine completed and then listed. Jophie is just hangin out in the bed wide awake of course :O)...He's enjoying his last meal for the day...Actually I think his favorite thing is the steroids but he won't be getting that buzz till 3:00....I guess my little prednisone prince will just have to keep his britches on until then...LOL Memorial Day is getting closer and I'm still praying we will be able to go to the parade. I won't know till that day. I guess thats what makes it so hard. You never know what Jophies going to wake up and feel like and then I have to make sure I have someone to travel with us as we have the traveling issue PLUS the weather is really going to play into this as well. I know...I know.... One day at a time girlie..One day at a time During this Memorial Day we're reminded of all those who have lost their little ones. Please stop by and drop a few lines. Even if its just "we're thinking about you" ...I know it will mean so much to these families. I'm also reminded of all the soldiers who are fighting for and have lost their lives for our country just so we can be safe. Let us be thankful and pray that our heavenly father brings them safely home. If you notice, he is even cutting the grass with a pair of scissors. Ok leaving you with a short and sweet one as I need to switch into beaver mode and get to sewing and beading! haha .... Thank you all for your continued prayers. Love you all Trina(Who is thankful for our soldiers who continue to protect us) and Jophie(Whose resting in the loving/healing arms of our heavenly father
Here is a soldier stationed in Iraq, stationed in a big sand box.
He asked his wife to send him dirt (U.S soil),
fertilizer and some grass seeds so he can have the sweet aroma and feel the grass grow beneath his feet.
Sometimes we are in such a hurry that we don't stop and appreciate the little things we take for granted.
Please say another prayer for our soldiers that give and give (and give up) so unselfishly for us.
Saturday, May 21, 2005 1:34 AM CDT
All is well with Jophie...We are still on the same dose of steroids and are still deciding on our next move with his adrenal glands...The seizures are still being controlled with this new increase! YAY!.... We are anxiously awaiting our Memorial Day Weekend. I'm crossing all fingers and toes and praying ever so hard that I'm able to take Jophie to the parade....He hasn't been since he was around 5ish....It will all depend on the weather, how he feels and am I able to get him there. Tomorrow is the start of "The Boutique Angels" auctions. The proceeds this time will be going to "THE CENTER FOR MISSING AND EXPLOITED CHILDREN" You can read about "The Boutique Angels" and see some of the amazing work done by the many talented designers in our group by using the link up above. The charity will run from May 23rd through June 6th) I'll be including a link tomorrow to make it easier to get to us. You can also find us by searching "Boutique Angels" in ebay. Lets see what else....We've had a beautiful weekend here with the sun shining, blue skys, and low humidity. I've been working on the pool trying to get it ready. The back of the house needs cleaned so badly. It has vinyl siding and mold covers it terribly which is Jophies BIGGEST allergy which means he can't go out there just yet. Another big thing I'd like to do with him this year is get him in the pool some. Our pool is an above ground pool that I bought for Jophie when we first moved to the country. We've been here going on our 8th year now and for the last 3 summers he has been unable to get in the pool. Mostly due to the fact its hard to lift him in and out safely and because of being ill. I am praying so hard that things work out so he can enjoy this summer. He deserves a good summer and a time of feeling well so badly. OK now I'm going to touch on a subject that I tend to side step. I have a tendency to "ignore" certain things in hopes they will go away. I've been told by my dear friends that I do tend to go into my "dream world" quite often. It is a nice place to be and I'm certain if they'd join me just once they would be hooked! hehe For years now...12 to be exact I have fought the state which controls Jophies insurance and for years he has went without many medically necessary items and equipment. Some I have paid out of pocket and other things well he just went without. He has an extremely mishapen back due to riding in an umbrella stroller a year past the weight limit because the "state" wasn't sure he "REALLY NEEDED" a wheelchair?? He CAN NOT WALK...duh...If I dwell on these things too long I just get infuriated. I don't ask for his medical equipment and medical items frivously. I save his insurance "tons" of money at every corner I can. They have no clue, don't appreicate it, and just plain don't care. OK let me take a breath before I get completely off track. I guess this frustration comes from several years that keep piling up of having to run this "ever present bulldozer" ALWAYS uphill pushing against these beuracrat fat cats who sit on their duffs who make up this "ALL SEEING ALL KNOWING" board of so called medical professionals?? who toss out decisions left and right based on the "MEDICAL NEEDS" of our children who are by the way ALL lumped under one big umbrella labeld "DISABLED" so, therefore they are all the same no matter the diagnosis and ALL should receive or be denied exactly the same thing medical equipment, supplies and resources...~~Shewww...Take a breath girlie~~ Oops, Did I say all that? Well you know I'm telling you facts because I have been living it and Jopihe sadly has to "suffer it" at the expense of his so-called caring state who is suppose to make sure he gets everything he needs. Let me start by saying Jophie did not ask to be this way. His parents made some very bad choices and in turn caused the majority of what you know about him. This child deserves everything I can possibly give him and more for what he has and continues to suffer through. You can't even imagine what a day is like for this little guy. "A day in the life of Jophie" up top is a cakewalk compared to all the "details" I left out to save his dignity and to spare all the squemish folk out there. I will say this. Knowing what he goes through each and every day and what I have to put him through "to live" mind you is more than you could ever fathom and I can assure you that if it were turned around.... I could not tolerate a smidge of what Jophie goes through daily and have still that shining smile he's so well known for on my face. OK with all that being said I've been forced to face certain things. Jophie has MANY items of medical equipment and supplies that are needed and will continue to be needed. As he has gotten worse more medical items have become necessary. These are items that his insurance has refused to cover SO I pay for them. I'm running a business from my home(Jopihes Jungle up top~~winks~~) and each and every dime I make goes to something he needs but its still not enough. The people selling the medical supplies and equipment are lying down and night and sleeping KNOWING these children HAVE to have these things. Sad isn't it and HOW can they possibly sleep well? So very sad that they would take advantage of these helpless children. Please don't get me wrong I don't mind giving Jophie all I can. There is no doubt in my mind that Jophie and others like him are EXACTLY what I'm on this earth for.. I would give up any part of me to get him what he needs. Caring for Jophie is indeed a 24/7 job so I work into the wee hours of the mornings sewing and beading making sure I always have something to sell. I do get a bit overwhelemed sometimes and feel like a nurse whose shift never ends. Kinda like groundhog day but then I see that smiling face and remember what its all about and why God placed this special little boy in my care. He has touched so many lives in a magical way and continues to. My life has been forever changed and I am better for it. Knowing all of that it has become necessary for me to set up a medical trust fund for Jophie to help with his medical expenses as well as saving for his funeral. Those who know me know how hard this is for me to do. You also know how close Jophie came to dying this last hospital stay. Each time he seems to get worse and then is when I'm forced to look at certain things. One being....Jophie has no life insurance...He has never been able to get any because of his health problems. I began trying when he was an infant and finally was told you will never be able to purchase any for this child. Many have emailed and asked if we need anything or if you could help and I've always said "we have it covered"...I now know it's time to graciously accept the help that keeps getting tossed my way. This is very hard for me to face but I know I must. When Jophie was smaller we were still able to go to church and our pastor at that time told us a story about a family who needed help. The father continued to refuse the kindess of his church family until one day this little lady who was one of the first founding members of the church came to him. The father couldn't understand why she seemed so hurt by his actions. You see she didn't have much to give but she was giving all she had. For him to deny her that gift she was offering for his family was a slap in the face. She felt rejected and hurt. Our Pastor explained how there are so many good people in the world and not everybody gives expecting something in return. The father graciously accepted her gift bringing tears of joy to her eyes. You know what she had? Canned goods. Doesn't seem like much does it? It was quite the contrary. Her gift far exceeded any dollar amount. You see these were vegetables she had grown specifically for the mans family...She grew them, picked them, and then canned them and KNEW they would not go hungry because of what she "could give"...Over the years this story has stuck in my brain and I've learned that sometimes the smallest gift turns out to be the biggest. There have been times along the way that I've wanted to help someone but didn't have the funds to just hand over cash. Thats when we have to sit back and say, "OK what can I do or what can I offer?" Most of the time it goes back to what we do best. I Make things so a blanket to this one or an outfit or bracelet to that one is what works best for me. AND you know what? Sometimes a kind word and a prayer goes a long way ~~winks~~ I will be speaking with a lawyer Monday and he will be advising me on how best to set this up. In the mean time here are a few things you could be praying about. 1. At the present Jophies wheelchair needs replaced. The insurance won't cover it because its been less than 5 years. Under normal circumstances it would last about that length of time however, Jophies back has gotten so much worse that he can not even sit up straight in it. It has been ill fitting from the beginning causing his back to become yet even worse. We have to prop blankets in arm pits and behind his head because his back won't even allow him to sit back not to mention the chair keeps breaking which has caused him to almost fall out of it on several occasions. It is Imperative that he sit up every day to keep things moving in his lungs. Since he is colonized with Proteus Morabilis and with Pseudomonis, it keeps him at such a high risk for another infection if we are not diligent with his schedule. 2. I can no longer safely transport Jophie as his chair with him in it will not fit in the van. We are in the process of trying to size down a bit which means I will have to find a wheelchair that is a stroller type so it will collapse and fit in a vehicle thats not a van not to mention I will have to lift him into his carseat. 3. Speaking of his carseat. It goes to 102 pounds so we are ok that way however, I have to see if he is able to sit in it and be properly fastened in. His back may not allow this in which case we will have to get a new handicapped car seat. The good news is the carseat should be covered as this was his very first one purchased when he was 2. I would think there have been enough years passed to justify a new one. We shall see. I'm still trying to find a decent priced tooth brush for him. Yea I know you all are saying, "just go buy one at wal-mart" ....Sorry no can do. Jophie can NOT have anything by mouth which include dribbles from toothpaste or water because of aspirating into his lungs SO when he was on the vent we were introduced to "The plaque Vac" ...It's this really cool tooth brush that hooks to his suction machine and while you brush it pulls everything right back out. Wow was I amazed! Well imagine my amazement still when I discovered his insurance would not cover it? What? OK so I'll just buy them...WELLL these buggers are 10 dollar a pop and NOT reuseable past a couple times and believe me we have tried. SO, I call all of his medical suppliers and wouldn't you know one of them was willing to sell us the toothbrushes at a discounted rate? HOWEVER, we had to buy them by the case....Wanna guess how much? $800 a case!!! WHO can afford $800 bucks a month for toothbrushes?? Not us...SO, I began buying them 1 or 2 at a time off the net for 6 bucks a piece...He has already had one oral surgery and it looks as though he is going to need another because the insurance will not cover his toothbrushes..They would rather put him through surgery and pay that price than montly toothbrushes? Makes no sense to me. 4. The "ALL KNOWING" medical board I was telling you about has now determined that Jophie needs only 1 box of gloves per month. WHAT? OK he is suctioned AT LEAST 12 times per day and generally more than that not to mention the sterile technique needed for care of his feeding tube site and many other things. We go through close to 5 boxes per month...Home medical supply will glady sell them to us at $11.00 a box....Yea right....OH and did I mention that he is allergic to LATEX AND TO THE POWDER? YEP, so now they just became more expensive because we have to buy VINYL with NO POWDER....There is some good news though. I found a company online who if I am reading correctly will sell them by the case for $37.50 @ 10 per case.....I have to call Monday to make for certain. I sure hope so cause that would be a good break in our favor. 5.My van is paid for so please pray that first off we can find the perfect vehicle that will haul Jophie, all his medical items that go with us when we travel, his wheelchair, AND that when we do the switch that it will be even so I will not have a montly vehicle payment. My van only has 28,000 miles on it plus its handicapped accessable and would be perfect for a smaller wheelchair and child. I would think it would bring enough by selling outright to get something even or pretty close to even. At any rate I know God has the perfect solution I just have to trust him and pray he makes it clear what he wants me to do. I'm gonna stop here because its time to feed Jophie and I'm getting more upset by the minute as all these "needed" items are actually on the page in front of me. It is a bit easier to take when I deal with only 1 item at a time. It's not so overwhelming that way. OK I need to go. There is so much more to tell but it will just have to wait. I'm going to get a picture of Jophie in his chair so you can see how terrible this is. In the mean time please continue to pray for his needs. Remember all our friends whose little ones have gone home. Also, there is a little girl that I have followed for a long time now. Her name is Emma Grace. She continues to amaze everyone with her strong will. She has neuroblastoma and on Dec. 9th received her mommas stem cells as a new treatment. She has been doing very well that way but has been on the vent for months because of a nasty lung infection. They are on an all too familiar emotional rollercoaster that I have no desire to ride again. Please if you could say a little prayer for this sweet little girl I know her momma would appreciate it. AND to follow my caringbridge buddy KIM(Kodys mom) I'll say its emmagrace (ar) ... I'm sorry this got so lengthy but once my fingers start flying on something I feel strongly about theres no stopping them! Thank you all for your continued prayers and support. We love you all Trina(Whose resting in his arms tonight) and Jophie(Whose resting in the loving/healing arms of our heavenly father)
Monday, May 16, 2005 4:43 AM CDT
Today is my brother Seans birthday in heaven. I can just imagine the party he is having on those streets of gold! :O) Happy Birthday buddy! I LOVE you! See you soon! The "Angel Auctions!" are fast approaching with our proceeds going to "THE CENTER FOR MISSING AND EXPLOITED CHILDREN" this time. The auctions begin on May 23rd and will continue through June 6th.....I'll be including a link so you can easily access the auctions once they begin. There a many talented artists/designers among our group. You can view some of our work on "The Boutique Angels" homepage via the link above. Jophies had a bit of stridor today but not terrible. I think he needs to go pooey again. I managed to give him a bath and I KNOW I'm gonna be so sore tomorrow...He does love his shower but by myself I can't get him in so I do a bed bath which he seems to enjoy as well however, he picks and chooses which bed bath he's going to enjoy and if you just happen to be the lucky recipient of an "off day" LOOK OUT! I tell you it's like wrestling with a baby bear and he normally WINS! haha The past year has really been tough. Jophie has really had a rough time overall and when I start thinking about all he's been through, all 12 years begin flashing before me and it becomes a bit overwhelming. Thats when I have to step back and listen. Listen to my heavenly fathers gentle whispers telling me, "everything is going to be fine" and, reminding me ever so gently: "in his time" Another dear friend sent this story a few weeks ago. I've read it often and thought I'd share. I hope it brings you as much comfort as it does me. SCARS IN LIFE Some years ago, on a hot summer day in south Florida, a little boy decided In the house, his mother was looking out the window. She saw the two as From the dock, the mother grabbed her little boy by the arms, just as the The alligator was much stronger than the mother, but the mother was much A farmer happened to drive by, heard her screams, raced from his truck, Remarkably, after weeks and weeks in the hospital, the little boy survived. The newspaper reporter, who interviewed the boy after the trauma, asked the The boy lifted his pantlegs. Then, with obvious pride, he said to the You and I can identify with that little boy. We have scars, too. No, not The Scripture teaches that God loves you. You are a child of God. He God has blessed you, so that you Never judge another person's scars, because you don't know how they got them. Thank you all for your continued prayers and friendship. Trina(Whose resting in his arms and very thankful for all my scars tonight) and Jophie(Who remains snuggled in the loving/healing arms of our heavenly father) 
to go for a swim in the old swimming hole that was behind his house. In a
hurry to dive into the cool water, he ran out the back door, leaving behind
shoes, socks, and shirt as he went. He flew into the water, not realizing
that as he swam toward the middle of the lake, an alligator was swimming
toward the shore.
they got closer and closer together. In utter fear, she ran toward the
water, yelling to her son as loudly as she could. Hearing her voice, the
little boy became alarmed, and made a U-turn to swim to his mother. It was
too late. Just as he reached her, the alligator reached him.
alligator snatched his legs! That began a very incredible tug-of-war
between the two.
too passionate to let go.
took aim, and shot the alligator.
His legs were extremely scarred by the vicious attack of the animal. On
his arms, there were deep scratches where his mother's fingernails dug into
his flesh, in her effort to hang on to the son she loved.
boy if he would show him his scars.
reporter, "But look at my arms. I have great scars on my arms, too. I
have them because my Mom wouldn't let go."
from an alligator, but the scars of a painful past. Some of those scars
are unsightly, and have caused us deep regret. But, some wounds, my
friend, are because God has refused to let go. In the midst of your
struggle, He's been right there, holding on to you.
wants to protect you, and provide for you in every way. But, sometimes, we
foolishly wade into dangerous situations, not knowing what lies ahead. The
swimming hole of life is filled with peril and we forget that the enemy is
waiting to attack. That is when the tug-of-war begins. If you have the
scars of His love on your arms, be very, very grateful. He will not ever
let you go.
can be a blessing to others. You just never know where a person is in
his/her life, and what they are going through.
So many more things to talk about but I'm really so very tired. I'll update more when I'm more awake.
Friday, May 13, 2005 3:30 AM CDT
Well I began this entry at 3:30 this morning but somewhere along the line I got distracted...Imagine that! LOL....I did notice its Friday the 13th...Sure glad I'm not superstitious.... Quick Note: For those of you who have been having trouble accessing Jophies sight never fear it was my error and all your computers are fine :O)...Somehow in the wee hours of this morning I managed to upload my licensed version of the song I have on here rather than the mp3....Thanks to a dear friend Laura for bringing that to my attention! Thanks hon! Lets see whats been going on. Jophie is still doing well on the new increased dose of steroids.The increase of his seizure meds also continue to control the seizures. YAY! His ped is on hospital service for 2 weeks so we will be waiting till thats over before we proceed with the possible weaning, bloodwork, and whatever else it brings. I'm sure you've all noticed that I've removed Jamies pics from the sight. I felt that out of respect for his new family I should return the sight back to Jophie that way if his new mommy would like to set him up a special sight it wouldn't be so confusing. I'll still update on how he's doing for those of you who have followed the boys for some time. Can you believe Memorial Day is almost upon us? I do love the holidays. Our town has the oldest running memorial parade in the nation...I believe this year marks the 124th? I'll have to double check on that but thats fairly close. I remember marching in that parade in high school! I LOVED BAND! Bet ya can't guess what I played??...Lets see how many of you can come up with it...Just leave your best guess in the guest book. Lets see who thinks they know me~~winks~~.....I'll fess up in the next guest book entry and the winner well....How bout an honorable mention in the next journal entry?...hehe OK BIG NEWS! You all remember I'm part of a group on ebay known as "The Boutique Angels" (See link below)...Our last auctions benefitted "ST. JUDES CHLDRENS RESEARCH HOSPTIAL.....Well we are about to run our next "Angel Auctions!" WOO HOO! This time our proceeds will be going to "THE CENTER FOR MISSING AND EXPLOITED CHILDREN" The auctions begin on May 23rd and will continue through June 6th.....I'll be including a link so you can easily access the auctions once they begin. There a many talented artists/designers among our group. You can view some of our work on "The Boutique Angels" homepage via the link above. Hmm what else? I think the biggest news this month is the anniversary of my brothers death. This month is always a happy and sad time for our family. I love spring with all the smells, flowers, and SUNSHINE but, it also reminds of that night 2 years ago. I'll never forget that phone call. It was just shy of midnight. I was waiting on my midnight nurse and the phone rang. I thought it was her calling off but it was my dad. I could tell something was wrong. You know that tone? The tone in someones voice you never want to hear. He told me Sean had been killed in a car crash. It was a terrible accident killing not only my brother but a dear friend of his who was about to be married. My brother left behind his 2 young children Cindy and Ryan. Sean was the most caring, loving person. He didn't have much but what he did have he would glady hand it all over to someone in need. He would give you the clothes right off his back or his last bit of food. He was well known for taking him homeless friends and other peoples unwanted children. He was raising his little girl alone because the mother had abandoned her as well as her 2 children that were not even his biologically. Needless to say the children were devasted and left with nobody. I've been buried in pictures from the funeral(I'm so glad I took pictures) and many pictures of us all growing up. Two other things I have that I guard as though they were gold. A lock of his hair AND one month before Sean died he called my house and my callwave was on. I saved that phone call for some reason. Now I know why. I copied that message to a CD. I treasure those last words to me, my name that he spoke and those last 2 words that will stay etched in my mind forever...."Bye Bye"...Little did I know that would be the last time I would hear him say those words to me. This collage has a few of my favorite pictures of my brother. The car pics are what was left of his car. The picture of Ryan and Cindy together on the bottom right was taken right after their daddys funeral. I was heart broken but the look on their faces hurt me more. The other 2 of Sean with his kids that both say "I love you daddy" were framed up for the funeral and left with him in his casket. I can't wait to see him again! I miss you more than all the salt in the sea! Don't worry we're taking care of Ryan and Cindy. I LOVE you and soon we'll meet again...What a day that will be in heaven! I'm leaving you with a poem I gave my parents. I framed it with a lock of his hair. To my dearest family, some things I'd like to say. Thank you all for your continued prayers and support. We love you all Trina(Resting in his arms tonight) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
But first of all, to let you know, that I arrived okay.
I'm writing this from heaven. Here I dwell with God above.
Here there's no more tears of sadness; here is just eternal love.
Please do not be unhappy just because I'm out of sight.
Remember that I am with you every morning, noon and night.
That day I had to leave you when my life on earth was through,
God picked me up and hugged me and He said,
"I welcome you. It's good to have you back again,
You were missed while you were gone.
As for your dearest family, They'll be here later on.
I need you here badly, you're part of my plan.
There's so much that we have to do, to help our mortal man."
God gave me a list of things, that he wished for me to do.
And foremost on the list, was to watch and care for you.
And when you lie in bed at night the day's chores put to flight,
God and I are closest to you....in the middle of the night.
When you think of my life on earth, and all those loving years,
Because you are only human, they are bound to bring you tears.
But do not be afraid to cry: it does relieve the pain.
Remember there would be no flowers, unless there was some rain.
I wish that I could tell you all that God has planned.
If I were to tell you, you wouldn't understand.
But one thing is for certain, though my life on earth is over,
I'm closer to you now, than I ever was before.
There are many rocky roads ahead of you and many hills to climb,
But together we can do it by taking one day at a time.
It was always my philosophy and I'd like it for you too;
That as you give unto the world, the world will give to you.
If you can help somebody who's in sorrow and pain;
Then you can say to God at night......"My day was not in vain."
And now I am contented....that my life was worthwhile,
Knowing as I passed along the way I made somebody smile.
So if you meet somebody who is sad and feeling low;
Just lend a hand to pick him up, as on your way you go.
When you're walking down the street and you've got me on your mind;
I'm walking in your footsteps only half a step behind.
And when it's time for you to go....from that body to be free,
Remember you're not going.....you're coming here to me
LOVE, SEAN
Sunday, May 8, 2005 2:41 AM CDT
Happy Mothers Day to all you mommies out there. Jophies seizures are now under control again. YAY! The new dose took a few days to build up but once it began building up, I began seeing less and less seizure activity. We still haven't went for the next round of bloodwork. I'll update as soon as I know when and what the results show. Mothers day is always so special to me. I am so thankful and honored for all the children God has allowed me to care for but especially for my sweet Jophie. I can honestly say I never dreamed I would be granted that honor yet again this Mothers Day. After all thats happened over this past year, I am forever thankful for this special time yet again with Jophie. Thank you father. I'm going to leave you with a beautiful poem sent to a group I'm on for christian parents with special needs children. The original poem is written by an unknown author howerver, the owner of our list who is a dear friend of mine adapted it so all who would read could see through "our eyes". The eyes of a mother with a "special" child for you see she too has children like mine. I hope this will warm your heart as much as it has mine. Thank you Susan! I AM A MOTHER'S PRAYER Thank you all for your continued prayers and support. We love you all. Happy Mothers Day! Trina(Whose very honored to be Jophies mommy) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Original Author Unknown.
This version adapted 5/11/2003
by Susan Mahserjian-Smith
FOR MOTHERS OF SPECIAL NEEDS CHILDREN
I am a mother's prayer.
I am sometimes clothed in beautiful language that has been stitched together
with the needles of love in the quiet chambers of the heart.
And sometimes I am arrayed only in the halting phrases interrupted by tears,
which have been torn like living roots from the deep soil of human emotion.
I am a frequent watcher of the night. I have often seen the dawn break over
the hills and flood the valleys with light and the dew of the gardens has
been shaken from my eyes as I waited and cried at the gates of God.
I am a mother's prayer:
there is no language I cannot speak; and no barrier
of race or color causes my feet to stumble.
I am born before the child is born, and ere the day of deliverance comes, I
have often stood at the altar of the Lord with the gift of an unborn life in
my hands, blending my joyful and tearful voice with the prayers and tears of
Thee father.
I have rushed ahead of the nurse through the corridors of the hospital
praying that the babe would be perfect, and I have sat dumb and mute in the
presence of delight over a tiny bit of humanity, so overwhelmed I have been
able to do nothing but strike my fingers on the harps of gratitude and say,
"Praise You, Lord!"
I am a mother's prayer.
I have watched over the incubator praying only for continued breaths as I
watched a tiny chest barely move. I have enveloped fingers so tiny they
were but the breadth of an "I love you." And I have caressed premature skin,
translucent, like the gossamer wings of an angel.
I am a mother's prayer.
I have babbled from her lips like a small brook on
a mid summer's morning, and I have gushed from her heart like a storm swept
torrent of leaves.
I have marveled at the development of a skill and I have wept over its lack.
I have wrapped my child's legs with plastic splints and Velcro ties while
asking the King of Creation to wrap his heart with salvation tied with
purity.
I am a mother's prayer.
I have cradled a child having a seizure while whispering 'It's okay honey,
mommy's here.' And I have sustained a whole household while we waited for
the ambulance to come. I have mixed medicine, filled syringes and held up a
thermometer that read 105 degrees. And I have sighed with relief over the
sweat in the little one's curls because the crisis was past.
I am a mother's prayer
Surrounding my child's heart like armor as a
protection from a world that can be cruel and heartless to one who is
different. And I have wept with that child when my love and prayers weren't
enough and the inevitable pain struck his heart like a piercing arrow.
I am a mother's prayer:
I have filled out numerous medical forms and
searched a hoard of specialists to find the right one for my child. And I
have driven long distances through a lonely night to an Emergency Room
praying only that his specialist would be available, all the while pouring
my heart out to the Great Physician.
I have fed my child through a tube when nothing else would sustain him and
praised God for its sustenance.
I am a mother's prayer.
I have followed my child through the darkness when
I didn't know her whereabouts and covered her like a blanket when she lay
down in an unknown bed.
I have sung songs in the night when there was nothing to sing about but the
faithfulness of God.
I have wrapped my prayers around my addict child and stormed the gates of
Heaven with him within my arms praying only for his healing.
I am a mother's prayer.
I have stood in a funeral home to make arrangements for the burial of my
child choosing just the right urn or casket with which to hold the remains
of my love.
And I have crawled to the foot of the cross to just hold on until I could
feel the arms of my Savior lift me up and carry me through to His peace.
I have been pressed so close to the promises of the Word that the imprint of
their truth is fragrant about me.
I have lingered on the lips of the dying like a trembling melody echoed from
Heaven.
I am a mother's prayer.
I am just as much alive in the glories of Heaven as
I am within the constraints of this world.
I am a mother's prayer:
I am still here: and as long as God is God, and truth is truth, and the
promises of God are "yes and amen," I will continue to lift my child before
the throne of Almighty God, and strive and plead with the boys and girls
whose mothers are in Glory, but whose ambassador I have been appointed by
the King Emanuel.
I am a mother's prayer. . . . .
Sunday, May 8, 2005 2:41 AM CDT
Happy Mothers Day to all you mommies out there. Jophies seizures are now under control again. YAY! The new dose took a few days to build up but once it began building up, I began seeing less and less seizure activity. We still haven't went for the next round of bloodwork. I'll update as soon as I know when and what the results show. Mothers day is always so special to me. I am so thankful and honored for all the children God has allowed me to care for but especially for my sweet Jophie. I can honestly say I never dreamed I would be granted that honor yet again this Mothers Day. After all thats happened over this past year, I am forever thankful for this special time yet again with Jophie. Thank you father. I'm going to leave you with a beautiful poem sent to a group I'm on for christian parents with special needs children. The original poem is written by an unknown author howerver, the owner of our list who is a dear friend of mine adapted it so all who would read could see through "our eyes". The eyes of a mother with a "special" child for you see she too has children like mine. I hope this will warm your heart as much as it has mine. Thank you Susan! I AM A MOTHER'S PRAYER Thank you all for your continued prayers and support. We love you all. Happy Mothers Day! Trina(Whose very honored to be Jophies mommy) and Jophie(Who remains wrapped in the loving/healing arms of our heavenly father)
Original Author Unknown.
This version adapted 5/11/2003
by Susan Mahserjian-Smith
FOR MOTHERS OF SPECIAL NEEDS CHILDREN
I am a mother's prayer.
I am sometimes clothed in beautiful language that has been stitched together
with the needles of love in the quiet chambers of the heart.
And sometimes I am arrayed only in the halting phrases interrupted by tears,
which have been torn like living roots from the deep soil of human emotion.
I am a frequent watcher of the night. I have often seen the dawn break over
the hills and flood the valleys with light and the dew of the gardens has
been shaken from my eyes as I waited and cried at the gates of God.
I am a mother's prayer:
there is no language I cannot speak; and no barrier
of race or color causes my feet to stumble.
I am born before the child is born, and ere the day of deliverance comes, I
have often stood at the altar of the Lord with the gift of an unborn life in
my hands, blending my joyful and tearful voice with the prayers and tears of
Thee father.
I have rushed ahead of the nurse through the corridors of the hospital
praying that the babe would be perfect, and I have sat dumb and mute in the
presence of delight over a tiny bit of humanity, so overwhelmed I have been
able to do nothing but strike my fingers on the harps of gratitude and say,
"Praise You, Lord!"
I am a mother's prayer.
I have watched over the incubator praying only for continued breaths as I
watched a tiny chest barely move. I have enveloped fingers so tiny they
were but the breadth of an "I love you." And I have caressed premature skin,
translucent, like the gossamer wings of an angel.
I am a mother's prayer.
I have babbled from her lips like a small brook on
a mid summer's morning, and I have gushed from her heart like a storm swept
torrent of leaves.
I have marveled at the development of a skill and I have wept over its lack.
I have wrapped my child's legs with plastic splints and Velcro ties while
asking the King of Creation to wrap his heart with salvation tied with
purity.
I am a mother's prayer.
I have cradled a child having a seizure while whispering 'It's okay honey,
mommy's here.' And I have sustained a whole household while we waited for
the ambulance to come. I have mixed medicine, filled syringes and held up a
thermometer that read 105 degrees. And I have sighed with relief over the
sweat in the little one's curls because the crisis was past.
I am a mother's prayer
Surrounding my child's heart like armor as a
protection from a world that can be cruel and heartless to one who is
different. And I have wept with that child when my love and prayers weren't
enough and the inevitable pain struck his heart like a piercing arrow.
I am a mother's prayer:
I have filled out numerous medical forms and
searched a hoard of specialists to find the right one for my child. And I
have driven long distances through a lonely night to an Emergency Room
praying only that his specialist would be available, all the while pouring
my heart out to the Great Physician.
I have fed my child through a tube when nothing else would sustain him and
praised God for its sustenance.
I am a mother's prayer.
I have followed my child through the darkness when
I didn't know her whereabouts and covered her like a blanket when she lay
down in an unknown bed.
I have sung songs in the night when there was nothing to sing about but the
faithfulness of God.
I have wrapped my prayers around my addict child and stormed the gates of
Heaven with him within my arms praying only for his healing.
I am a mother's prayer.
I have stood in a funeral home to make arrangements for the burial of my
child choosing just the right urn or casket with which to hold the remains
of my love.
And I have crawled to the foot of the cross to just hold on until I could
feel the arms of my Savior lift me up and carry me through to His peace.
I have been pressed so close to the promises of the Word that the imprint of
their truth is fragrant about me.
I have lingered on the lips of the dying like a trembling melody echoed from
Heaven.
I am a mother's prayer.
I am just as much alive in the glories of Heaven as
I am within the constraints of this world.
I am a mother's prayer:
I am still here: and as long as God is God, and truth is truth, and the
promises of God are "yes and amen," I will continue to lift my child before
the throne of Almighty God, and strive and plead with the boys and girls
whose mothers are in Glory, but whose ambassador I have been appointed by
the King Emanuel.
I am a mother's prayer. . . . .
Friday, April 29, 2005 5:47 PM CDT
Well I finally have made it back here. What a ride we have been on. Jophies seizures continued to get worse and I finally ended up taking him to see his pediatrician. Jophies seizures use to be horrid up to about 2 years old but then with the right medications they were for the most part under control. He would still have a few breakthrough seizures during times when he was ill, when his levels would get messed up, or because of a reaction from a drug that didn't mix well with the seizure meds. Jamies seizures were also uncontrolled from birth. He had in excess of a 100 per day and those were just the ones I could see and count not to mention the ones I missed or when he was sleeping. His indeed were much worse. Jamie currently is on 3 seizure medications which keep his down to a minimum and at a much safer number rather than 100 . We indeed are not strangers to seizures but, I do hate seeing them rear their ugly heads after lying basically dorment for so long. For Jophie it seemed bloodwork was in order so off we went over to the hospital where he had tons of bloodwork. For the most part everything looked great. His white count was 6.1 YAY! Remember when he came home from the hospital in November and he was neutropenic at 1? Wow! What an improvement from then. His electrolytes and liver are great as well as the many other things that were tested. We also checked his Tegretol(seizure med) and his Klonopin(Seizure med) levels. Since he had just gotten a dose of both drugs prior to the blood work we knew the level would or should in theory be a high level unless of course he was low to begin with....Regardless we could compare what we got to his base line. I believe she said the level came back around 8 which if my memory serves me right that is what his normally runs during a fasting bloodwork which would stand to reason that IF that blood draw would have been a fasting level those numbers would be lower.... At any rate she increased his Tegretol by 100 mg and will be scheduling him to have more levels drawn only this time it will be fasting levels to determine what they after this increase. IF the levels are still too low she will increase the Tegretol and once the klonopin comes back she can also increase it if need be. Since the increase I am seeing fewer seizures with the most of them being facial near the eyes, mouth, and face in general. On occassion I am still seeing a bit of hand/arm/leg involvement but nothing like it was prior to the dose increase. Jophie has been on these 2 particular drugs since he was 6 months old plus the same dose SO, it is entirely possible that he has outgrown his dose. We shall see. Now, to the next problem. You all know we have been weaning his steroids since last November and last I told you he was down to 2.5 mg 4 x per day. My last entry if you remember, Jophie was having trouble with that last drop so I began fiddling with the steroids a bit. I tried increasing one dose back up. He did respond well but the other 3 dosing times he was still having probs. I then tried going up on 2 of the doses but still he was having problems. I finally just gave in and gave him back the dose he was on prior to the last drop which was 5 mg 4 x per day. He LOVED that. SO, what does that tell us? Basically his adrenals aren't putting out enough to sustain him and are doing one of 2 things. They are either still trying to jump rejuvinate themselves or they are not working at all....So whats next? Well, the day we go for the Tegretol and Klonopin fasting levels they will also draw levels to test for his cortisol(Steroid/Hormone are adrenals make naturally) level. We then will return to her office where he will receive an injection of ACTH and then we will go back to the hospital for more bloodwork. THIS test will then determine based on the levels whether his adrenals are working a little or not at all. Once we get those levels back that will determine our next step. IF they are functioning somewhat I would suspect we would continue to wean but at a very slow pace. She also said we could even bump him back up to 10 mg if he needs it. I don't like going back any more than we have to however, if he needs it then so be it. In the event the adrenals are NOT working then she will be scheduling us an appointment with Columbus Childrens Hospital where he will be seeing an pediatric endocronologist. Sherrie is a wonderful pediatrician and a dear friend. I have full confidence she could handle this however, she said she sees so very few of this type of situation that she doesn't want to miss something or maybe not give him something he might need, or dose him too low or to high...etc....I concur........ SO, if the test reveals no activity then I guess off to Columbus Childrens Hospital we go. I'm not going to worry that far down the road right now. I have too much going on with him to worry about things that may not come about. He indeed has too many problems for me to be borrowing any ~~winks~~ Well thats us for the last few weeks. So it seems Jamie and Jophie both have kept me hopping. For those who have been asking....Jamie is doing fine. He actually has been living with his new forever family since last July. My midnight nurse kept him the whole time Jophie was in the hospital and, even when Jophie was able to come home in November he was still to unstable to bring Jamie back into the picture so, she just kept him for me. It turned out that with him being there so long, the whole family just fell in love with him. i prayed this would happen and am so happy for him and them.....He couldn't be in a better place. They love him so much and he is VERY well cared for PLUS, I can see him whenever I like. Isn't it wonderful how our heavenly father takes care of everything? He made the path for me to follow from the beginning knowing the outcome. I certainly had no clue how it would end but he sure did and oh how sweet the ending. I'm certain God isn't finished with me just yet....I know he is just making a way for many more children to come to me. The thoughts of this excites me beyond measure! :O) Do you ever wonder sometimes what would have happened had we have chosen another path? I know I sure do and it terrifies me....Don't you sometimes wish God would just put super glue on the path he'd like us to travel so I we couldn't waiver to all those other paths that appear so much "better"? :O) Well I need to scoot as I have a gazillion things to acomplish this evening. I'm tube feeding Jophie right now...He's getting a breathing treatment and I just suctioned him which he is going to need again after the treatment PLUS, I need to get cracking on a new set as my other ends Monday along with some bracelets on ebay. I also have a bunch of bracelets to list that I finished up in the wee hours this morning. Sheww! I need to light a fire under ME...hehe Thank you all for your continued prayers and support. Please remember all our friends. Tom, Jennifer, and Eli are traveling to St. Jude to be with many of their little friends who are having a hard time right now. Pray for travel safety and that God will give them the strength and courage to be supportive and helpful to these families. I'm certain this continues to be very hard for them still so close to sweet Bens death. We all miss him terribly. I can only imagine the emptiness they feel. Don't forget Eastons MRI is May 19th. Lets pray for clean scans folks! On another note, I do wish we of the caringbridge community could bring the links back to you who support us with so much love and so faithfully..... I'm sure it is greatly missed by the families and the little kiddos. So far no word on how caringbridge is going to handle this SO, for now I will try and keep you updated on the ones on my sight. If there are any you are concerned about just toss me an email and I can update you on how they are doing. For now just keep them all in your hearts/prayers and hopefully this will be resolved soon. For now we will "Just keep Swimming!" "Just Keep Swimming" Thank you all for your continued prayers and support. We love you and appreciate you all more than you know. Trina(Whose resting in his arms and adding some superglue to my shoes~~winks~~) and Jophie/Jamie(Who remain wrapped in the loving/healing arms of our heavenly father)
Thursday, April 21, 2005 10:50 PM CDT
The past few weeks have been a bit trying and tiring..Many things have come about and now as of today some new changes in our household so I'm accepting and dealing with all these emotions........
Starting with Jophie.....For those who don't know he has been having trouble with this last steroid drop......We feel his adrenal glands have indeed failed and starting around the 8th he began in an adrenal crisis.....The symptoms were so subtle and were also many things that happen to him normally not to mention he can't speak so for me it was and always is a challenge to discover what is wrong......I began playing around with his steroids after a couple of days giving him a boost here and there to see if that was in fact what was going on.......He always responded very well which led me to believe that was the case.
My hope was to be able to increase only 1 or 2 of the doses and leave the other 2 alone but that was not the case......As of 2 days ago I have increased him back up to the last dose he was on prior to this last drop and he seems to be recovering. I will be contacting his pediatrician next week to see what the next plan of action is. We will most likely be having blood draws to determine his fasting cortisol levels as well as monitoring his liver and kidneys as this can also cause failure of both. His liver is monitored on a regular basis because of all his seizure medications which are also metabolized in the liver and also a risk of failure this just makes it even more possible.......
My hope is that we can eventually wean him completely and that his adrenals began functioning again.....Please continue to pray for the little guy as he still is struggling to recover from this last ordeal.....
Now to our drastic turn of events......As of this morning our little family which once was 3 is now only 2........My midnight nurse stopped by this morning as she had something to talk to me about.........Her family has decided to adopt Jamie.....I've prayed for this for so long....Jamie does indeed deserve a forever family to love him unconditionally just as Jophie has someone. I myself was just unable to provide that. While I am rejoicing in this wonderful news for Jamie I am at the same time saddened as I did love the little guy as my own....I will always remember the day I brought that sweet baby home from the hospital and he will always remain in my heart forever.....
Tomorrow I will began cleaning out everything that is his from last year.....His room is still packed and remains the same as when he left here last July.......My midnight nurse will not be needing any of his items and many of the clothing items are too small........I will begin listing all his clothes on ebay and the toys that she does not want I will either sell, or donate depending on the item.....
Please pray for us as we adjust to all these new changes.....I will have to learn to live with one less child and will also have to adjust financially as our income just dropped by half......As a foster parent I have done this many times but the going away never gets any easier especially when you've had them from birth......
Thank you for your continued prayers and support.....I appreciate you all more than you can know....
All our love....
Trina(Whose resting in the arms of my father tonight), Jophie(Who remains wrapped in the loving/healing arms of our heavenly father) and Jamie(Who has found his forever family) Thank you father...
Saturday, April 16, 2005 2:26 PM CDT
We have had the most gorgeous weather which I REALLY need. I am so low on saratonin from the winter and all thats happened in the past few months. I need refuling ever so bad. I love going out and just standing and soaking up the sunshine! AHHH! Lets see what else is new? Both Jophie and Jamies wheelchairs need worked on. It's like pulling teeth to get someone to come work on them. They are covered under insurance and one would think the suppliers would be very willing but that is not the case. You would think I was asking for a limb donation from them. LOL.....I do hope we can get them fixed soon. I have not been happy at all with Jophies newest chair. This is his 3rd and they can only be replace every 5 years so we are stuck until at least around his 14th-15th birthday...UNLESS he has a big growth spirt and they have no choice ~~winks~~ I'm really hoping he stays well so we can enjoy this summer. Last summer seems like it were only a dream or its as if it never existed. It seems when we have long hospital stays like that no matter what season when it rolls around the next year its as though I "missed" something. It's hard to explain.This summer I would LOVE to figure out a way to get Jophie into the pool. I bought it exclusively for him but for the last 3 years we have not been able to get him in because of his weight. We need some sort of Hoyer lift. OH we have a hoyer and its mobile but its not made in such a way that it will work. The boom does not pivot nor do the legs open wide enough to get flush up against the pool. Bummer. Really that Hoyer is just a waist as it won't go completely to the floor anyway. So, we just lift both boys. Orginially we were going to have a ceiling lift put in. It was approved and the planning stages begin however, it was determined with our ceilings and the construction of the home that the ceilings would most likely not hold. Bummer again. My plan at some point in the future is to come up with a way to have the boys a handicapped accessable home built. It's a major feat to take on but they deserve to be comfy. They didn't ask for all thats happened to them and the least I can do is try and make it better and as comfy as possible. We shall see how it all unfolds. Well, I need to scoot as I'm right in the midle of feeding Jophie and my day nurse took off for half the day. I have to keep reminding myself nobody is here so I don't forget to get his meds and food! LOL Thank you all for the birthday wishes and all your kind entries. We so appreciate your love and prayers. Continue to keep both boys in your prayers. Pray that all germies stay away and that Jophie can eventually tolerate being completely weaned from these steroids. All our love Trina(Who is still resting in his arms) and Jophie/Jamie(Who remain snuggled in the loving/healing arms of our heavenly father Saturday, April 9, 2005 11:54 PM CDT I'm happy to say this update is coming from home! Jophie is doing some better from my last entry. He still isn't acting just right so please continue to pray this will pass. HAPPY BIRTHDAY JOPHIE! My sweet baby at 1 and 2 months This is one of my favorite pictures of Jophie at 2 years old. He would officially became my son shortly after this picture was taken. 12 years ago I was driving to Cabell Huntington Hospital to "just look" at a sweet little baby that needed placed in foster care. I had just gotten my liscense the day before and honestly never dreamed I would be getting a call so soon. At 26 I was nervous and oh so excited to take a peek! This would be my first child and a baby at that! That 20 minute or so trip to Cabell seemed like eternity. Brain damaged....Vegetable....Medically Fragile....CT Scans show sporadic damage....Guarded Life Expectancy were just a few of the words I would hear that day. Did I hear those words? Yes, sort of....My eyes could not get past that beautiful baby lying there.....His eyes and that hair....Oh my...There indeed was so much more to him than all those words and tests. He was indeed about to show the world just how much more. He was so small at just under 5 pounds. Small but mighty would soon outline the life of one small baby who many thought had a very grim future. In the past 12 years Jophie has endured more than most do in an adult life. He's faced death on more occasions than I can count. He's battled the vent on more than one occasion. He has edured and continues to endure more tests, procedures, treatments, surgeries, rare and deadly super bugs and faces many monsters beyond what any of our imaginations could fathom and he always does this with a smile. A hero is said to be someone who is distinguished by exceptional courage and strength. My life has forever been changed by such a person. He's my hero..He's my son. I've learned so much from this sweet child and he continues to touch many lives. If I ever in this life have a healthy child I will NEVER...EVER....take their health for granted. I will always be thankful for their health. Jophie. Thank you for being you and for teaching me to love beyond measure! Happy Birthday baby boy! Momma loves you more than all the salt in the sea! XOXOXOXOXO PICTURES UPDATED: Don't forget to check out the birthday photos in the photo section :O) Thank you all for your continued prayers and support. All our love Trina(Whose resting in is arms tonight) and Jophie/Jamie who remain snuggled in the loving/healing arms of our heavenly father)
Saturday, April 9, 2005 0:28 AM CDT Welp Jophie is officially 12. It was 12 years ago that I drove to the hospital and picked up my sweet baby and now It's almost 4 a.m. and I am gathering things up as I fear I may be taking Jophie to the hospital. I just have a moment to do a very quick update as I don't want to leave him alone for very long. I wanted so much for him to feel well on his birthday. I truly never felt I would be spending another birthday with Jophie. Thank you Lord for the time you are giving us. He's not been feeling well for about 3 days and today was a bit worse. His O2 Sat is terrible. Well it was terrible hangin out in the low 70's. I've given him a few extra breathing treatments, cranked up his oxygen, gave him an extra 7.5 mg of steroid, and tons of suctioning. The only problem is the little guy will not cough. ugh He can stifle a cough like nobodys business especially if it hurts to cough. Right now I'm more comfortable with his sat hangin out in the high 80's low 90's. Not his best but I will take it over 60's and 70's any day. I at first thought he had to go to the bathroom and I still do but I don't think its causing these problems. I am just sick to my stomach thinking this direction but I can't wait till the last minute. With kids like this you have to be prepared. I actually haven't upacked my bags from this last hospital stay. Almost everything has remained packed since November as well as the van. I do have to replace a few items. I'm praying so hard that I am wrong and he will be all Mr. Sunshine for his birthday tomorrow. Um I mean later today. OK I have to go and check on him and finish getting things ready just in case. Please say a prayer for Jophie that this is nothing and he will perk up. Trina(Whose resting in his arms tonight) and Jophie/Jamie(Who remain wrapped in the loving/healing arms of our heavenly father.
Saturday, April 2, 2005 10:39 PM CST Well the totals are in. ~~drum roll please~~ Our final total for the St. Jude auctions was $2541.24! Way to go Boutique Angels! We are in the planning stages of our next charity. Tentatively it is scheduled for the end of May. I'll post the exact date and which charity we will be sponsering once our polls have ended. Mark your calenders for what is sure to be another great event! Well I have tried my best to get a picture of Jophie in the Easter outfit I made him. It has proven to be quite a challenge. I'm going to try again and try and catch him when he's not so tired. His back has gotten so bad that its nearly impossible to get him in a position where he doesn't fall over. The whole situation just has me bummed. Hopefully I can sort out a way to get a pic of him. On a good note I got the cutest pic of him this evening. He has been Mr. Smiley all day and I just couldn't resist snapping a few pics. I am a photographing maniac when it comes to my kids! :O) Check out that smile and those oh so expressive eyes. My sweet boys who both have very little brain, who both were supposed to be vegetables, who both had/have guarded life expectancies, and feeding tubes to survive. I can't imagine starving my sweet angels to death. All I will say is first thank you to my dear friend Sherrie who is a christian AND the boys pediatrician. She like I saw more than just those pictures of their very damaged brains. And second, the whole Terri S. story was very painful to all in this household and to everyone whose lives have been impacted by my sweet boys. I still feel the sting as the percentages from the majority of the American publics opinion continue to flash in my head. I pray my boys mean more to the majority than just a burden to a society. Jophie and Jamie, momma LOVES you both more than the all the sand on the beach or all the salt in the sea! Welp off to order Jophies birthday party goodies! I can't believe we are at this point in time together. Thank you God. Thank you all for your continued prayers and support. We love you all. All our love Trina(Who is thanking God just because)and Jophie/Jamie(Who remain forever wrapped in the loving/healing arms of our heavenly father)
Tuesday, March 29, 2005 4:47 AM CST I hope everyone made wonderful memories this Easter. Jophie felt good and was smiley the whole day. You can't imagine how thankful I am for this time with him that I truly never thought I would have. I'm working on getting some pics of the boys in their Easterwear. The night nurse will have to get me one of Jamie and I am going to try and get one of Jophie here. I'll post those just as soon as I can. I hate to cut his so short but its nearly 6 a.m. and I'm literally falling asleep at the keyboard. I will update more when I'm fully awake. Thank you all for your continued prayers and support. All our love Trina(Whose so thankful for everything God has given me) and Jophie/Jamie(who remain forever wrapped in the loving/healing arms of our heavenly father)
Saturday, March 26, 2005 3:45 AM CST Easter is right upon us. The glorious day our Saviour arose from that grave. He died and he was buried and on that 3rd day came forth for all to see. It all began back in Genesis in the Garden of Eden. A Garden where animals roam freely and vegetation springs forth in all its glory. A place where God comes down in the cool of the day to speak to and be with His creation. It all began with one garden and two trees. One forbidden and one for giving life. Thousands of years passed and In a small Galilean village called Nazareth, a young boy had grown to be a man. He worked as a carpenter, as his father had before him. The carpenter, named Jesus, now knew that the time was right. It was time to lay down the tools of his earthly father and enter in to the work of His Heavenly Father. For the next three-plus years, He would walk from village to village, bringing the Good News. When the right amount of time had passed, and He had attracted enough followers, he would enter Jerusalem on a donkey while the crowds shouted praises to Him. It was the week before the Passover. The time was perfect. Jesus was no stranger to the events that had occurred in the Garden of Eden. As a part of the Trinity, He had been witness to it all. Now, He was in another garden, called Gethsemane. As He prayed to the Father, He waited for the officials to come and get Him. The fulfillment of the words spoken in Genesis 3:15 were about to come true. He would be nailed to a Roman Cross and sacrifice His life for the deliverance of all men from slavery to sin. He would undo the tragedy of the first garden. Crucifixion—an especially horrific way to die—required that the accused carry their crossbeam to the site of execution. There, typically, the crossbeam was nailed to a tree. In Jesus’ case, His tree of death became our tree of life. It’s easy to think this is the end of the story. Jesus died; He rose again, and ascended into Heaven. And the beginning and the ending are the same. A look at the last chapter in Revelation tells us how: Then the angel showed me the river of the water of life, as clear as crystal, flowing from the throne of God and of the Lamb down the middle of the great street of the city. On each side of the river stood the tree of life, bearing twelve crops of fruit, yielding its fruit every month. And the leaves of the tree are for the healing of the nations. No longer will there be any curse. ~~Revelation 22:1-3a God’s story does not change. In the beginning there was a river, which fed Eden. In the end, there is a river of life. In the beginning there was a tree of life. In the end, the tree of life remains. In the beginning there was God the Father, God the Son, and God the Holy Spirit. In the end, it is the same. More importantly, in the beginning was a husband and his bride. In the end—because of the tree in the middle of the story—there is the Lamb and His Bride. Then I heard what sounded like a great multitude, like the roar of rushing waters and like loud peals of thunder, shouting “Hallelujah! For our Lord God Almighty reigns. Let us rejoice and be glad and give him glory! For the wedding of the Lamb has come, and his bride has made herself ready.” ~~Revelation 19: 6,7 Think About It During the Easter season we celebrate the resurrection of the Christ from His death on the cross. A tree. We celebrate His victory over the curse brought about by eating of the fruit of the forbidden tree in the Garden of Eden. Simultaneously, we celebrate the Tree of Life, of which we will partake for eternity if we believe in that middle tree. God’s story is amazing, isn’t it? Truly amazing. To all our family and friends We want to wish you a Happy Easter. May your heart be filled with love on this glorious day for our Saviour; The Lamb who gave his life unselfishly so that we could live forever. HAPPY EASTER! Trina <>< Jophie and Jamie <><
Friday, March 18, 2005 4:50 PM CST Important Update It seems that caringbridge is requesting that we remove all links to other childrens caringbridge sights. For those of you who have given me links to your websites and have requested they be included on our sight I am so sorry for this decision. For those of you out there for one reason or another do not want your childs sight viewed, I can respect that. Why not excercise the password protection option given to ALL of us and then nobody can view a sight without the password. Does this not seem like a simplier solution to this problem? Please know that I have all your sights saved and will continue to visit you and be assured the prayers will still be coming your way as well as any other needs that may arise. While I do understand to an extent, I fear these decisions are going to be quite hurtful to many children in many aspects. From personal experience I can say after spending months at the hospital with Jophie this community and all their friends were sometimes the only connection I had to the outside world. My only regret is that I didn't have you all throughout his whole life as its been quite the rollercoaster. I also would like to say that ALL the links that were on my boys sight were used with permission with a large portion of those being placed at the request of parents. I pray this problem can be resolved to benefit all in this community so no child may go without. Yes without. This community is supposed to be "caring" for all the sick children of this world. Let me paint you a very "real" but disturbing picture. Imagine a mom or dad sitting in their childs hospital room. The child has a terminal illness and they are fighting for his or her life. Praying for a miracle or better still a cure for their child. They've been there NOT weeks, NOT months, but YEARS. The mom or dad are tired. They look pale as they pick at what is left of their childs meal. They had to quit their jobs, leave their homes, and come into a world nobody wants to visit. They have no money for food and no place to sleep so they sleep on the floor and eat from their childs leftovers. Yes this happened and is happening all over. The RMH and Target House are wonderful however, these type of problems are still happening and not just at the hospitals. It's seen in the homes where the child is on hospice, or is chronically ill, or in remission but it took years so their job is long gone and on and on and on..... Where do we come into play you ask? We as a community come together time after time for families like these AFTER we read or hear from someone about their situation and THEN we rally around them and help in any way we can. Food cards, phone cards, packages to the children, or anything that would help or brighten their day. This could happen to any of us. It could be me or you tomorrow and I hate to think my link to this "caring" community will be gone. Let me paint you another picture. A small child is dying. A bone morrow transplant is needed but there is no match to be found. All have been asked from family to friends. There is no one left to ask so talk of their child who is most likely going to die surfaces in those innermost thoughts we pour out into these journals. Many visit the child via their sight. ONE "caring" caringbridge family happens along and steps up and says "I'll help" and then starts the drive for a bone morrow match. Yes this is a true story. It did happen and without our link to one another stories like these will go unnoticed. "Thank you Terry" Your kindness to all these families even in the midst of your madness is appreciated more than you know. You will also find the needs of children that would otherwise go unnoticed had it not been for Kim. Thank you Kim for all you do as well. "We all have a story" to quote "Big Bens daddy". We would not be a part of this community otherwise. THAT is the common bond between us. I pray that caringbridge looks deep into their hearts and remembers what this community is all about. I pray that they will come up with the perfect solution so that none of these little ones have to suffer yet even more and that the ever growing ties that lovingly bind us together may continue to hold. All our love Trina(Who tonight is VERY thankful for all those out there that I know and don't know who pray for my boys and check in on them daily) and Jophie/Jamie(Who remain forever wrapped in the loving/healing arms of our heavenly fathers)
Thursday, March 17, 2005 3:46 AM CST Well it seems I almost forgot a holiday! How could I forget St. Patricks day being Irish and all myself? So, to show our true Irish spirit we will be wearing green for the next 24 hours. It's sure to keep us pinch proof as well!~~winks~~ Jophies been pretty noisy in he wee hours of this morning. He's just now starting to settle a bit and I do hope it lasts for the rest of the night. This Saturday we will be dropping his steroids again. Please pray that he will tolerate this drop as well. He worried me a bit last night as he was just not acting like himself. He seemed a bit off but around 6ish he seemed to perk up a bit. Today he slept most of the day since it was after 7 this morning before we both actually got to sleep. It's almost 5 a.m. now and I'm hoping we both can sleep and not make it another 7ish morning. Jamie is still doing well aside from a little sinusy thing going on. The night nurse came and picked up his breathing machine and is going to see if that helps him out a bit. She's having someone make him an Easter outfit and I'm whipping up a bracelet plus I bought him and Jophie the softest chenille blankies with duckies on them. It will match Jamies Easter set perfectly. It does get a bit tricky buying for the boys because of all their medical and cognitive issues however, I do know what they like. You just have to get a bit creative~~winks~~ Jophie and I will not be going as he is still immune compromised. I'm glad Jamie will be able to go. Gosh sitting here thinking about it, I can't even begin to remember the last time we were able to go to church. I do miss my church family and it does get a bit hard but Jophies life and now Jamies has always been dependant upon me making wise decisions concerning their exposure to public places. When Jophie was a baby we went quite often and he loved it. As he got older and bigger it became next to impossible to get him into the church not to mention the immune problems that began surfacing. And yes you read that correctly. We were unable to get into the church. They refused to build a ramp and the day I lifted Jophie up several steps IN his wheelchair and almost fell well that was our last day. I later found a church nearby that I was able to get into with both boys in their wheelchairs and let me tell you it IS indeed difficult to find a church accepting of OUR little situation. I'm still not close to them like I was our first church and oh how I miss out on the support you get from a church family especially now when dealing with 2 very critical children. I will say that there is a very sweet lady in that church who always makes sure I and all the other shut-ins have tapes of the services every few weeks. I'm so thankful for her and what she does enableing me to at least get to listen to a few services. I never dreamed that at 38 I would be considered a shut in....LOL Well I need to scoot as I'm pooped and still have a few things to do before I can even get near my bed. I'll update again soon as I will need to bring back all our Easter wear after this oh so green pinchable holiday is over :O) Off to visit a few friends and pass out some virtual pinches! You all better go grab your green cause if I stop by and theres no green to be found.....Oh boy look out cause the PINCHING will begin! hehehe Thank you for all your prayers for my boys and all our little friends. I appreciate you all more than you know :O) All our love Trina(whose resting in his lap) and Jophie/Jamie(Who remain forever wrapped our heavenly fathers loving/healing arms)
Sunday, March 13, 2005 8:52 PM CST It's been pretty busy round here. I have a few customs from auctions that have ended plus I'm finishing up the last item from the St. Jude auctions. I hope have everything shipped by Tuesday at the latest. Speaking of. The Jude auctions are still doing great! We are now at a bit over $2200.00 and still about a week or so to go! Thank you to all who have helped make this a such a huge success. There are still some great boutique items being offered from all the great ladies involved. Go Boutique Angels!! Here's the link again. Boutique Angels Charity St. Jude Jophie has been a snoozy box all day. The little fella was still wide awake when I hit the sack around 6ish this morning. Our schedule is by far one of the most mixed up ones I have ever seen. I was able to lie down and get a much needed nap once Jophies aid arrived. Thanks Katy I sure needed that boost today. :O) Now I'm all ready for what I'm certain will be another wide eyed night. Easter is fast approaching as well as Jophies birthday. I can honestly say I NEVER dreamed Jophie would see this Easter let alone another birthday. My words can never express how thankful I am that I've been given this precious time alone with him. I do miss Jamie but the "alone" time we have spent together has been priceless beyond measure. I continue to cherish these moments. Jophie is still doing well on this last steroid drop. I pray the next drop will go as smoothly and that ALL germies will stay away. I think I've found a new aid. I did get several return calls from the ad I placed but quite frankly became really overwhelmed with them all. One of the names kept jumping off the page so I'm praying that is Gods way of helping me choose. It does scare me having to train someone else, bringing a stranger into the home with a whole set of new germs for Jophie to become used to. I didn't beat around the bush though. I was very adament about how immune compromised he is and that it is imperative that she NOT come if she is ill at all. Not even a sniffle. He can NOT be exposed to anything. She was willing to get a flu shot so we are now waiting the 2 week period for it to be effective. Please continue to pray this is the right person and that she will work out. I'm not certain if I told you all but I became an aunt again on Nov. 17th to little Luke Sean. My sister named him after our brother Sean who was killed in a car accident soon to be 2 years ago this spring. The little guy was a preemie by about 3 months and his lungs are a bit compromised still. He's in the hospital with pneumonia. If you wouldn't mind to say a little prayer that he doesn't contract RSV while there and that his premature lungs can fight off this bug I'd appreciate it. Lets see what else? Ahhh! LOUIES scans were CLEAR!!...YEP you read that right CLEAR, CLEAN, NOTHING ON THEM! YAY! Doin the happy dance again! Go Louie! Go Louie! Go Louie! I just checked on Easton and I'm so glad to see an update. I thought I was gonna have to go rattle some wargo cage for info ~~grins~~... It seems Easton doing great as well! YAY! He even made it to church for the first time since 2003! What a blessing to be able to go as a family. I think this deserves another happy dance! Please continue to keep him in your prayers. Eastons next MRI is May 19th. Lets think clean! Continue to remember the Bowens as they try and pick up the pieces and go on in this life on Earth without their sweet Ben and for Eli who trys to understand and comprehend in his young mind all that has happened to his family. Thank you all for your continued prayers and kind words in the guestbook. I appreciate each and every person who takes the time to say a little prayer for all these children and my boys. You'll never know how much it means. Thank you All our love Trina(Who is still resting in his arms tonight) and Jophie/Jamie(Who remain forever wrapped in the loving/healing arms of our heavenly father)
Friday, March 9, 2005 1:53 PM CST UPDATE: The Boutique Angels St. Jude auctions continue to do well! YAY! The totals are climbing and we hope to bring in a TON for the kiddos at St. Jude! My auctions have ended but there are many more wonderful ladies offering some great boutique items. Please see link below for all the auctions still ongoing. Jophie is still doing well on this last drop. The next steroid drop is planned for march 19th. Please continue to pray he tolerates these drops and those germies stay away! I'm leaving my last entry up for a while longer. Please continue to remember the Bowens in your prayers AND Sweet Louie is going for scans Thursday so all you prayer warriors lets don our gear and pray for clean scans! Go Louie! Go Louie! Go Louie! Thank you all for your continued prayers and support for me and the boys. We love you all and could not do this without you. All our love
Ack! So sorry for the delay! I can't believe it has been a week already. It's been quite busy with Jophie not feeling well. I've determined that this last steroid drop may be factoring in to some of this problem. I've had to keep giving him little "boosts" of steroid to keep him breathing well. He responds good which makes me think that is the problem. As it stands we are still at the last drop of 2.5 mg. 4 X a day and with the second dose he's getting a 2.5-7.5 mg boost depending on how he's acting. Jophie is however, doing some better compared since my last entry. He still seems a bit "off" but, not so bad now that I can't function. When he starts acting ill I can't accomplish anything for fear of what is about to happen. Can we say Post Traumatic Stress Syndrome? LOL
The birthday cake is officially gone and yes I did give Jophie an itty bitty little taste of the icing on his tongue. Shhhhh! No telling :O) He really likes that sweet stuff but what kid doesn't right?
But, no. That’s still the middle of the story. The real beauty of God’s story is that He won’t be outdone. The story He began is the story He ends.
