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UPDATE: September 20, 2010

I always get choked up by everyone's comments, and wind up having to sign off. Next time, I'm catching up on everyone else & not checking my notifications til last thing. I'm sorry I've neglected checking up on everyone & making sure all my loved ones are ok. You know if ya'll need me, I will come running as fast as I can, just don't expect me to know through Facebook! Deal? Ok, where to start. Thank you David, Traci, Debbie, BJ, & Gina. I know each of you would give me the shirts off your back if I needed it and vice versa. I do love you all dearly, and appreciate all of you, and the rest of my family & friends that aren't even on FB. Without the 1000s of prayers said over the last 3 years...I don't want to imagine where we'd be at. And I am grateful each of you continue to pray, several times daily for my Aidan. PLEASE KEEP PRAYING. Faith & prayers are what keep us able to keep going. As for what I said about pride. I used to be very shy, then I became more outgoing, but very proud. I don't like to admit that I need anyone or anything because then to me, that means I've failed at being independent. And my Mom drilled it in my head from a young age, that you have to be independent...SO depending on people, is a slight issue for me. I'm working on it. I understand, given the circumstance of life, I can't do it all. I've been to every plasma infusion with Aidan by myself. My Dad has been there for every surgery, and has came to about 15 Specialists & infusions with me & Aidan over the last year & a half. My Mom came to a couple of the surgeries & 3 times for infusions. But the rest of the 250+ infusions & at least 100 specialist's visits have been just Aidan & myself. I cry quite a bit. I don't let Aidan see me cry, and well, ya'll know my lack of a love life. SO occasionally, I have my BFF Suz's shoulder to cry on, but that's the only shoulder I physically have had to lean on besides my parents about once a week or so. And financially...well, my last status explains that one. I'm unable to work, due to Aidan. If I put him in a care facility, I would be able to work, but we're not talking daycare. We're talking rest home. I WILL NOT DO THAT. So, I'm his home health nurse, his teacher, his mom, and his bestfriend. I receive $500 a month in child support from his father & Aidan receives $360 a month in disability. That covers the rent, water bill, power bill, cable bill, & gas for traveling to the appts, and that's about all. My mom's family has been extremely generous, and have donated a total of $2280 since July. That's helped tremendously with gas, bills, & travel expenses to MUSC at Charleston in July for them to make more plasma serum drops for his good eye & IHTC in Indiana to see Dr. Shapiro. But, I'm going to have to learn to swallow my pride and sign up for foodstamps & any other assistance that we might qualify for. I've held out as long as possible on doing that. Dad's also thinking of selling the house at Surfside. If he does that, I might be able to afford a deposit on a place closer to family & friends. (Aidan needs a yard to play in & somewhere not surrounded by the elderly, so he can be loud). It would also help with the upcoming expenses we'll have going every 4-6 wks to Indiana to see Dr. Shapiro. But that will take away my source of income for next year, as I was doing the property management/rental of the house...so Dad wants to train me on the telecommunications side of EJW Enterprises, and learn how to contract out all this stuff for Verizon, so I'm going to still be able to maintain & take care of my Aidan. But, it's still going to be a couple months before he can start me teaching me the biz. SOOOO, I'm a wee bit stressed. And, I again have turned a reply into a NOVEL!!! I'm sorrry!!! GEEZ, I AM going to write that novel one day....thank you all so much again, for the love you show me & Aidan. I don't know what I'd do without ya'll. PRAY PRAY PRAY & Love & Hope ♥ ♥ ♥ (And as usual, I also can't read my own words without getting even more emotional, so no proof-reading has been done. Sorry.) Now back to pretending everything is normal & none of this is real in mine & Aidan's world for the rest of the night! Maybe tomorrow too! LOVE YA'LL!!!!

UPDATE: September 17, 2010

The reply to a comment that went awry and turned into an extensive novel of an update...sorry for my not being able to proof read it, and for it's scattered, here & there & back here train of thought...I am usually a great poof reader, finding editing flaws in published novels, but I can't read my own words about Aidan...anyway, to all that continue to pray, to those that continue to ask, and love, and hope....here's the latest on Aidan and his fight with Plasminogen Deficiency. I know I wrote some the other day...but I got a bit emotional and skipped over some parts. Hopefully, I've explained everything...and in a way that ya'll can understand. If you have any questions, feel free to ask. I don't mind answering, some days are better than others emotionally, but I've come to a sort of peace with it now...if a mother ever can...anyway....HERE's what started as a reply to Jennifer's inquiry on how Aidan was doing tonight on my FB page...09/16/2010...even if I did keep writing til it's now 09/17/2010. I think I'll go back to sleep now. GOD BLESS & GOODNIGHT!!!!! <3

He's doing ok, Jennifer, thank you for asking. His mouth is beginning to feel a little better, with him eating some soft proteins like tilapia. Still lots of applesauce. Both ears have been steadily holding at "good" the last 5 weeks. And, good is better than it's been since December, so we're thrilled about that. With the ears doing better, hopefully the hearing loss will stop at just the high notes he's lost, in one ear as of Tuesday. His good eye is trying it's best to stay membrane free, with the Fresh Frozen Plasma drops Dr. Teed makes for him at MUSC Storm Eye Institute. We've been putting a couple drops in each eye, basically flushing them with FFP, every 2-3 hours while he's awake. Started that when his good eye started getting red and showing signs of irritation. His prosthetic eye stays bruised looking, and is uncomfortable for him. We would have it removed, since we now know he can't ever have the front part of the prosthesis...but, right now, he can't have surgery anywhere, because of his blood disease...they've put off doing any follow up CTs, because of the contrast...and the mass on his right kidney. The mass shows up 3x larger on the ultrasound, because of the thinner density around the outer edges of the mass, so they're arguing with me about even a follow up ultrasound. Plus, the amount of radiation his entire body has already been exposed to, especially in April and May...and his lungs, having the artherosclerosis already in the upper area of one lung, and the lower area of another, he's been tiring out more easily, and coughs if he's physically active for more than ten or fifteen minutes at a time. If he has a big day, where we go on an adventure, or if he goes to spend the night with his Dad or his Papa (my Daddy), it usually takes him at least 2-3 days of lots of sleeping to recover his energy. BUT he's still a 6 year old boy, and refuses to sit still, he won't admit he's tired (will persistently say no I'm not tired, as he nods off to sleep) He still loves to play, although he can't be as rough as he'd like. He loves karate, and to pretend...but, the slightest bump to the mouth, or something in his eye, or normal things that you would shake off...causes these dang membranes. Anyway, he's still laughing, running, playing, trying to get by with normal 6 1/2 year old boy stuff. He's gotten to where he will sit down now-a-days and take a break, but then he's right back at it, enjoying being a child. With the FFP not providing the specific enzyme he needs, but in such a small quanity...and it only staying useful in his system for about an hour. 2 hours max, before it's used...and the plasma itself and the other enzymes that he doesn't lack as much of, genetically, stays in his system for about 24-36 hours before it's used and filtered through the kidneys. With him having between 250-300 bags of plasma infused into his body, via PICC lines and most recently, his chest port, over the last year and a half...it's put strain on his kidneys, filtering that pumped in Fresh Frozen Plasma slushy (we call it that, cause it's still cold and and almost slushy when they pump it in)...the strain has irritated the kidneys, most likely causing one of the ligneous membranes to form, and that is what the mass is on the kidney. Where the ligneous membranes form, anywhere they form, they cause end-organ damage, or kill the tissue underneath. That's why we pray for the waning of the disease, the waning of the membranes, to not kill these tissues, these organs. His heart also showed a calcified ductus remnant. The ductus normally closes after born, along with the umbilical artery, but, there's not supposed to be any calcification. Calcification, and the atherosclerosis, all the other conditions and diseases that are now a complication, or bring caused by the root problem of his severe plasminogen deficiency. What has been done since the last CTs with contrast at the end of April, is falling probably going to be done by Dr. Shapiro's team in Indiana. There's only been around 1500 documented cases of this disease in the entire world since the mid 1850s. Japan just had it's first cases of it, EVER, just this year. 2 elderly sisters who had both had eye surgeries for vision problems, but before the surgeries, had never showed any symptoms of plasminogen deficiency, because their bodies produce more than Aidan's(their cases not as severe), and they have a different type of mutation, with only one mutation...and other things. As far as the severity, he is an extremely severe case of Severe Type 1 Plasminogen Deficiency, with his plasminogen levels at 17 %. Normal is 75-140. Last year and the beginning of this year his plasminogen stayed between 20-21%. But, both of the Japanese women are currently being treated with the same type of non government approved, plasma eye drops. The plasma eye drops, just like the plasma, doesn't really have enough of what Aidan lacks, but they are, in Italy, working on a plasminogen CONCENTRATE eye drop. Think of frozen orange juice concentrate. Well, what Aidan lacks, is about 1/8 of that can of concentrate, every couple-few hours. And that concentrate is what our bodies use to heal themselves, and wounds by clotting and other things...well, that concentrate is mixed with water, alot of water versus the concentrate, right? And, that's what a bag of plasma equates to for Aidan. What he needs gets mixed with a bunch of other stuff he doesn't need which puts strain on his body, and hurts more than helps right now. BUT if Italy can come out with that plasminogen concentrate, which Dr. Shapiro hopes the researchers will have a formula figured out within a couple years, then they're just a step away from the injectable form which Aidan needs. It has to be administered in the vein, but that's no problem in exchange for living a longer life! With the disease being so new, with testing for plasminogen deficiency being figured out finally in 1997...and there's not enough people with it, especially younger people with a severity...the doctors, the pharmacutical companies, no one's interested in it. Too expensive to do all the research & testing with no profit because not enough people...but Aidan is a fighter, and there's Dr. Shapiro and her team in Indiana, and the researchers at Merck in Italy, and then Dr Shuster and his team at the university in Germany. Hopefully, someone will figure it out. We also were blessed to have Dr. Teed and his team at MUSC, and still see him for Aidan's main eye concerns. He's the only one that'll mix up the drops. The pharmacy at MUSC won't touch it due to liability with it being "research"...but as for the other specialists cataloging the progression of the disease...we're stopping. I can't put Aidan through anymore than what he's already been through. He's gone above and beyond for research purposes, there's no need to catalog his steady decline with ear doctors, and eye doctors, and dentists, and cardiologists, and pulmunarists, every 3 weeks and Hem/Oc every week, sometimes everyday, and doing bloodwork and labs and chemsitry panels every week and watching red blood cells, and white blood cells, and lymphocytes, and creatine, and protein levels...and so, so, so, so much more. We're stopping. I'm still going to take him every time anything appears to be getting worse, to whichever specialist he needs, but I'll be taking him every 4-6 weeks for a regular check-up, screening, testing, whatever needs to be done up to Dr. Shapiro in Indiana. She's the co-founder of the Indiana Hematology and Thrombosis Center, which is partially funded by federal research grants, and funded the rest of the way from patients payments. And she is the US specialist on this disease. She's the only doctor I have spoken to among 27 SPECIALISTS, that knows anything about the disease. Only one other hematologist had ever even heard of it. I've been doing all the research, going in with the research, and the game plan, and pretty much telling the doctors what I believe is going on and where, and what treatment might work, and how much and when, and they say ok, type it up & sign it & that's what we do. BUT in Indiana, Dr. Shapiro knows, cause we've studied the same research. I've studied HER research. I can talk with her, and comprehend and vice versa, and SHE makes the decisions. SHE writes out the orders, and the recommendations, and is able to tell me what's going on and what to expect. That is SUCH a relief...such a blessing. To have her take Aidan as a patient, is something we've been praying for since last spring, when we tracked down the "Dr House" of the disease...and it was her. I have faith she'll be able to help Aidan in ways others would not, and I feel at ease and able to breathe knowing we're doing everything possible, seen everyone possible, and have the best doctor possible now working on him and his case. I have been speaking to IHTC.org, and Dr. Shapiro's assistant and 2 other specialists up there, since we got back at the beginning of the month. I email them with any new concerns, or pictures of his mouth or other problem areas, when concerns arise & we figure out a game plan til next visit. I've got a lot of handy dandy medical things & have learned a lot over the last 3 1/2 years. They seem to have given me my honorary pediatrician award or something...lol...but they know, I've seen it, I know how to do it, I know what to look for, I know how to try our best to prevent it, I know what to do in just about ANY possible scenario that could come into play with this thing...I even have a 3 ring binder of organized lab results, surgery info, medication dosage charts, research, every puzzle piece any doctor might need if an emergency arises anywhere, and that book goes with Aidan everywhere, along with his bag of meds, face masks, hand sanitizer, and our other insulated cooler bag with plastic ice freezer thingys to keep his plasma serum drops cold, because they have to stay frozen until I dethaw a new bottle, slowly in the refrigerator every week (cause the stuff doesn't stay good long after thawed) And, then has to be kept refrigerated til half the bottle is tossed when I get another finished thawing in the fridge the next week. WOW....OK, it's midnight, I started writing this at 9:45, after dropping Aidan off in Gastonia to spend the next 2 nights with his Dad & grandparents. This is the first time he's got him in months, and I'm missing him like crazy, and of course worried, because I'm not the one taking care of him at the moment. But, I'm going to stay in & rest tonight , since I've already napped and then wrote the night away. And go out tomorrow, and maybe tomorrow evening and find some fun or friends to have lunch or dinner with or maybe both! Who knows. But, I do know we're ceasing the merry-go-round of specialists and gonna start living more normal lives. Going to have more time, more fun, more adventures, more laughs...it's a good thing. It will all work out. God has a plan! And I apologize, that what was supposed to be a quick response to a question, into another lengthy update novel. Please continue the positive thoughts & prayers!!!! That's what keeps us going!!!! <3 <3 <3

UPDATE: July 16, 2010

14 weeks of FFP (Fresh Frozen Plasma) and this time, it's still not working. We've had 3 times it looked hopeful in an ear & the mouth, but so far....it's not working. He's developed ligenous membranes in both ears, left eye, throat...and they're getting worse. As of today, he right ear drum is expanded & green, and they're afraid he's very close to loosing his hearing. His 2 permanent front teeth are turning clear & hollow, and are getting ready to fall out. The membranes, or excessive fibrin build-up, is on his gums above those teeth...and spreading...onto the roof of his mouth and the right side of his inner cheek. This will lead to him loosing all his teeth & then...gets worse. We're going to try an antibiotic & see if it helps with the ear, but the Dr doubts it's infection since I've been doing antibiotic drops in his ears for months. His blood pressure is still staying high, and his lil heart is steadily beating way above normal. When I asked about the follow-up ultrasound for the mass on his kidney....I got a look of pity. They don't think there's any need to do the ultrasound. If the membranes aren't getting better, then the ones inside aren't either...and there's nothing we can do. They can't do any procedure to make sure, but with the chest xray & CAT scans...the 2 spots in his lungs could be membranes or could be due to arteriosclerosis. They don't know & he can't have anymore radiation exposure unless absolute emergency. I called and spoke with Dr. Amy Shapiro's nurse in Indiana, since Dr. Shapiro's not returned Aidan's hematologists' calls in the last month...hopefully, she'll call her today, if not by Monday. Still trying to reach Dr. Schuster in Germany...without any luck. Honestly, Dr. Schuster appears to be Aidan's only chance. With the FFP not working, and Aidan now has multi-organ involvement, prognosis is poor. His body is getting tired. He wears out a lot easier, getting dark red circles under his eyes...

I think that's it...trying to remember...I'm sure I left something out, and will update later when I realize what it was. Thank you all for so many prayers over the last 3 years....and please continue to pray for my baby boy...and pray that Dr. Shapiro or Dr. Schuster will answer our calls for help & be able to do something... I'm not giving up, no matter what they tell me. <3

And, here's one of the links to Dr. Shapiro's write up about plasminogen deficiency. Aidan's is Severe Type 1 Plasminogen Deficiency with multi-organ involvement.

http://www.hemophilia.org/NHFWeb/Resource/StaticPages/menu0/menu5/menu330/PlasminogenDeficiency.pdf

UPDATE: August 27, 2008

So...where to begin. Some of you already know the story about Aidan's eye. Some of you don't...and some don't know all...so, I thought I might should write one story for it, that way I won't have to sound like a broken record. :-) Back in Feb. of 2007, Aidan came down with what the doctors believed to be conjunctivitis...aka pink eye. No big deal, you might think....BUT it wasn't regular pink eye. His eyes started getting red over the weekend, took him to the doctor on Monday, they prescribed some eye drops & sent us back home. By Wednesday, his eyes were worse than ever, with his left eye swollen so badly it, the eyelid was turning inside out. So, took him back to his pediatrician. They sent us directly to the eye specialist. They did a culture there and we found out the next day, he didn't have pink eye....he had the flesh eating form of strep in his eyes. The doctors (he saw 3 at that practice) changed his drops 4 times in 7 days, but didn't prescribe any oral antibiotics. The drops didn't do anything to improve his eyes....and we were told the following Wednesday (7 days later) to have him at the hospital for emergency surgery at 2pm. When we arrived at the hospital, during post-op, the eye specialist told us he was having to do the surgery because he was going to have to remove his left eye and check the right eye's pressure & damage. Needless to say, I asked him, "How can this happen? We've been bringing him to you everyday for a week. You've changed his drops 4 times. He's not even 3 yet, and you're going to have to remove his eye????" The doctor's response was, "I'm sorry, but we didn't take the infection serious enough." Needless to say, if I hadn't been holding my son on my lap, I would have flogged that doctor like a wet hen. Here, my son was about to lose his eye because they didn't prescribe oral antibiotics? Because they had failed in their job as specialist????????? Thankfully, during the surgery, they found that Aidan's eye pressure was only 2, but the decided to leave his eye, check him in the hospital, and put him on IV antibiotics for a week. So, fast forward some of the details. Aidan spent his 3rd birthday in the hospital. Luckily, the IV antibiotics cleared up the flesh eating Strep in both eyes, and his right eye suffered minimal damage. But, his left eye...it ate off the outer membrane down to the first several layers of his cornea. We've been praying & trying ever since to get his vision restored & save that eye. He's had 25 surgeries total in the last year and a half. They have done everything from Amnio-grafts in Columbia to 2 synthetic cornea transplants up at the University of Rochester up in NY. Others have included removing membranes that keep growing behind the transplant...and now....we're at our 4th eye specialist at MUSC. They've been doing the synthetic corneas, instead of regular donor corneas, because, in children under 8, it raises the success rate to 75 % vs. 25 % with a donor cornea. But, with the synthetic ones, he grows a thick membrane behind the transplant, and also has to wear a protective contact. This last synthetic cornea transplant, that he had March of this year, has dissolved almost completely. He has only the screw (or scaffolding) left in the center of his pupil....That makes it where the protective contact won't stay in his eye...and at the rate it's dissolving, makes the chances of his eye rupturing a whole lot greater. We went again today to MUSC. They took some pretty graphic pictures of his eye...and I'm sure it'll wind up in a text book or seminar (I had to sign a waiver)....the strep was extremely rare to begin with...all they could compare it to was a chemical burn, but now...let's just say, I put drops in his eyes everyday, and never knew how bad it really looked til I saw those pics...it doesn't even look like a human eye. I can't begin to imagine the pain my lil trooper has endured...and is still enduring. But, he' always smiling and laughing, and winning the hearts of everyone. He hasn't let it slow him down at all. Not the pain, and not being blind in that eye for over a year. He's 4 & a half now. And has to endure yet another painful surgery & recovery tomorrow. This time, they're using a donor cornea (thank you to all that are donors!!!) The chances of his eye rejecting it are 75%. We're praying he's part of that 25% success rate. After we went to the doctor today, they initially scheduled his operation for Tuesday, because that's as soon as they could get a free OR. After they took the pictures...his doc (who's also a professor) cleared an OR for tomorrow. They just called to let us know a lil bit ago. That just reminds me how serious this is...... So, tomorrow at 1pm, please, take a moment and send up a lil prayer for my baby. He's been through so much, and is still fighting for something alot of us take for granted everyday....2 eyes. He's fighting it with a smile on his face and kisses and hugs for anyone and everyone. Thanks in advance to everyone for all their thoughts & prayers over this long struggle...some have been there from day one...others just finding out. I'll update with a new blog as soon as I can, and let you all know how it goes tomorrow. Until then.....keep praying!!!!!!

UPDATE 9/6/08: So, just got back from another post-op visit with the doctors at MUSC... The good news is, his donor.. cornea is clear... (It will gradually get cloudy & opaque) But there's nothing more they can do there, except remove his eye & put in a prosthesis...so we're looking for a miracle....trying to reattach his retina, and possibly a transplant of the entire front 1/3 of his eye, since his iris is gone (and that's the colored part that acts like a diaphragm to constrict and open the pupil to allow light in and out)......BUT we did get the name & of the top specialist in retina reattachment at Duke.....they say, if it can be done, she's the one to do it! If not, he also mentioned a place.. up in Michigan....so we're not ready to give up this fight just yet!!!! thanks to everyone for all their hope, prayers, and support......and please, please keep praying.......miracles happen daily.......and as one friend said, if anyone deserves one, it's Aidan........

UPDATE: 11/17/08 (HAPPY THANKSGIVING) Aidan's eye started rejecting the donor cornea this week. His eye is now "melting" as the doctor put it. There is nothing more they can do. 3 failed cornea transplants...and numerous Amnio-grafts...and almost 2 years of pure hell, it's finally ending for my son. In a way. Granted, this is not what we've seen about 10 specialist for. This is not why we have hung in there through the skin of our teeth with his eye pressure dropping to 2. This is not what we fought so damn hard for....this is not him having 2 eyes, seeing with two eyes ever again....no more hope. Yes, alot have said God must have some wonderful plan for Aidan and that's why this is happening. That it will make him stronger. That his personality is so awesome that it will be able to overcome anything....but if you want to feel what he feels....cover your eye with some tape and a piece of dark cloth...make yourself a patch over your left eye. See how long you can keep it on there before you start having headaches. I only lasted 4 hours and I think that is terrible. I can't even begin to imagine what lies ahead for my child...what turmoil he might face. Never to be able to be a policeman, the armed forces, heck, I can't even tell him he can fly a space shuttle. He's always going to have limitations from here on out. And that's what kills me. Any parent wants to give there child the best they possibly can...and when something like this happens...that is so completely off the damn charts and out of control....you lose hope...you lose faith...you become angry & bitter. Hopefully, maybe one day this will pass...but right now...it an agonizing feeling of sadness & loss & the inability to comprehend what the future may hold. Yes, I know this probably isn't making much sense right now, and I don't really feel like proof-reading it, but those that made it this far...thanks for giving a damn. Thanks for caring. Please keep Aidan in your prayers Monday morning.....

UPDATE: 12/03/2008 Aidan had surgery to remove his left eye this past Monday morning. Everything went okay. There was more scar tissue than they anticipated, due to all the previous surgeries, but they were able to cut most of it out. That made it possible for them to go ahead and sew in the back part of the prosthetic into the muscle of the eye socket. This will make his "new" eye move almost completely in sync with his good one. We go in 6-8 weeks for them to make a mold of his eye, and then artists paint the eye to look exactly like the good one. Little flecks in the blue & everything. They say you won't be able to tell it's not his natural eye unless you look at it closely while it's moving. I'm still scared to death of it all. He's more lethargic than he's been after any of the other surgeries. Of course, they kept him on a morphine drip, but that's all out of his system now, or should be. I did get him to watch a couple of movies on his little DVD player in the bed last night. He's very sensitive to light & noise right now, so the regular TV can't be used....and I've gotten him to swallow his medicine...and that's a feat in itself, let me tell ya! Today, I'm hoping he might actually eat something other than bread or crackers and maybe want to stand up on his own :-) I hope. One of the hardiest things yesterday....he said he didn't want to open his eyes til the bandages came off and he could see out of his new eye....and I had to explain how it's going to be a super new eye, extra special made just for him, and not sick like the other one...but he won't be able to see out of it. Of course, I was trying to do this off the fly, so I said the new eye was magic and gave him special powers for his imagination...more powerful than any of the other kids because of this special eye, and that during the surgery, they also made his heart a little bigger to be able to hold all the kisses and hugs and love that he's gotten and will keep getting for the rest of his life because he's such a special boy. Yeah, maybe I shouldn't of said all that, but how else do you make it okay for a 4 year old to get a new eye but still not be able to see from it? Life just isn't fair...and I'll have to start a new blog about the injustice of it all...as one friend put it. He's resting now. I'm going to right one more quick blog, then go curl up with him, maybe talk him into another movie or flying the butterfly around the room at least.....Thank you all for everything....Love you.

UPDATE: 02/13/09:
Aidan was supposed to have the mold for his "new eye" poured Jan 23.
However, after a another appt with the Eye dr, the oculearist that will make his eye, has been put on hold. Aidan's body has grown a very thick membrane over the prosthesis that is sewn into the muscle. He's had pseudo-membranes before when the eye was trying to regenerate the conjuctivi that covers the eye....but this is alot thicker and completely different. And since there are no eye components in the socket anymore, this shouldn't be happening. The professors at MUSC (and about 4 of them with 5 residents were called in to take a look) have no idea what is happening. They say they have never seen or heard of this happening in all the Enucleation surgeries they've done or researched. They've been researching for 3 weeks straight...and no record of it occurring anywhere in the world. So, they gave us this tube of ointment, and he gets an inch of it spread over the membrane 4 times a day. They were hoping this medicine would somehow help dislodge the
membrane and it would come out on it's on. But after 3 weeks, of this, it hasn't softened up at all. He also has kinked tear ducts in both eyes, and they want to stick a probe down and un-kink them.

Aidan has to go back to the hospital Monday, the 16th, for them to probe his tear ducts and remove the membrane. They want to send the membrane to pathology and see what it is. And until they're sure that it won't grow again, he can't have his "new eye". The last time he went in....for that terrible surgery where they removed his eye...the 29th surgery...I promised him that that would be the last surgery. I've been praying so hard....but, I've been praying for 2 years now over this, and it
doesn't seem like God is listening to me or anyone else about this. I'm try not to lose hope, not to lose faith., not to question the Lord. But no child should ever have to go through this.....and with it being my child I'm honestly about to a breaking point. I can't talk about it without crying uncontrollably and it's getting harder to stay strong for Aidan, but I can't let him see me cry, can't let him see me sad.....don't ever want him to think he's different or that he's the reason I'm crying....he's too little to understand. He will be 5 the 27th of this month, but still he's too little to understand.

So I ask yet again....please pray for Aidan this Monday, the 16th, as he undergoes his 30th eye surgery. Hopefully there will be an end in sight soon....

Thank you all for the continued love & support...it really means alot.

UPDATE 2/20/09:
Aidan did well in surgery this past Monday. However, we received some shocking news. The membrane that had formed is called a Ligneous membrane. Ligneous means "wood-like". These membranes occur after trauma to the eye when the patient has a rare blood disease called plasminogen deficiency. It is an extremely rare blood disease, that affects his blood's ability to create plasma. This disease normally presents itself between the ages of 4 and 5...which is why we are just now finding out about it.
They removed the membrane, sent part of it to Hematology & part to Pathology. They also went ahead and sent blood to the Hematology/Oncology division of MUSC. We have a follow up visit with HemOc (as they call it) on Tuesday for more blood tests and to discuss the disease. They had to make a special eye drop for him by spinning his own blood until only plasma was left, and they call this "Serum drops". These drops have to be placed in both eyes every hour on the hour. He's also on 3 other drops, but not as frequent. From what the research shows, these serum drops will hopefully help his good eye & his prosthetic eye to absorb the plasma his body naturally lacks, and will keep the membranes from growing. And he'll be able to have the front part of his prosthetic eye made.
We just started the serum drops in his right eye (his good eye) on Wednesday after the results from the lab came in, and after his good eye was showing signs of forming a membrane. This morning, I noticed there is less membrane like material in his good eye, so hopefully, these serum drops are working.
What this blood disease means, I'm not completely sure yet. I've researched as much as I can on the internet, but want to wait until the doctors actually explain it to me. From what I've researched, his eyes will grow membranes for the rest of his life, if there is any trauma to the eye (pink eye, surgery, getting a scratch, or a black eye). They also form membranes in other parts of the body, including organs...and the disease makes him more likely to develop blood clots. There is no cure for this disease.
So, where we go from here, I don't know. Hopefully I will know more on Tuesday after talking to HemOc. Thank you all for the prayers and support. I'm sorry I have been avoiding updating everyone. Needless to say, I haven't wanted to sign into the myspace this week. I'll try to update again on Tuesday, after I know more from the doctors.

UPDATE 05/27/2009
I'm sorry I've not updated Aidan's blog, but things have been more than a little crazy. Aidan's blood work showed that his plasminogen levels are 21.0%. Normal is 73.0 - 122.0. He also has a MTHFR mutation called C677T. One other worrisome factor in his blood work initially showed his Anti-Phospholipid Antibody (IgG-APA) at 26.4. Normal is 0.0-11.0. The last round of blood work showed his IgG-APA had come down to 12.6%, but that is subject to change regularly. We have been trying to find answers to what all this means for Aidan.
After seeing a hematologist, a pulmonarist, and a cardiologist at MUSC....and after they found 3 ligenous membranes already growing yesterday (the one on the removed eye, one in his mouth, and one in his right, middle ear). And that's just the ones that were clearly visible. No telling what may be inside, I finally got to speak to Dr. Amy Shapiro who is the lead researcher in the US for Plasminogen Deficiency, and she's also the medical director of the Indiana Hematology & Thrombosis Center. She has answered alot of questions and given us at least a little hope.
Aidan's disease, and the severity of such low plasma or plasminogen in his blood will cause these ligenous, or wood-like, membranes to grow anywhere in his body where there is a mucous membrane. And they're all over your body. All it takes is a minor irritation or injury to the mucous membrane or mucosa and a ligenous membrane will form. Something as little as some pepper on food could cause them in his mouth. An ear infection or cleaning an ear after a bath with a q-tip could cause them in his ears. He is also at risk for them to develop in his upper and lower respiratory tract which would be fatal. There's also the risk of membrane developing at the base of the skull on top of the spinal cord which could cause spinal fluid to build on his brain.
After speaking with Dr. Shapiro last night, she informed me there is no cure, and really no treatment. Hopefully in ten years there will be, but ten years will be too late for Aidan.
There is a couple of "treatments" we could do to try to get the membranes to go into remission instead of spreading so quickly like they are now.....
One is hooking him up to an IV for plasma transfusions every other day for around an hour and a half a day. As long as his veins remain strong and healthy they won't have to put stints in his body to pump in the plasma. She said we could try this every other day for 2-3 weeks, then go to every 3rd day till we see a remission in the membranes. The second option is a drug called warfarin used to treat blood clotting disorders, which we can try after the IV transfusions to try to keep the membranes at bay. If the come back, he'll have to undergo more transfusions, for the rest of his life. But hopefully, the transfusions will work, and that would save his life.
I'm in trying to find a hematologist that is closer to here or in NC to try to do the treatments....otherwise we're looking at an extended stay in Indiana. Either way, Aidan is going to get some form of treatment.
That's about all that I can explain right now....I'll try to update again soon....thank you all for your prayers...please continue to pray...I believe in God's miracles and that they happen everyday....
[Co-pilot Aidan flying over the beach]

Click here to read an 8 page article on Plasminogen Deficiency by Dr. Amy Shapiro

UPDATE 6/25/09: Aidan had a PICC line inserted last Wednesday at MUSC. It's like a portable catheter that has a valve that sticks out of the skin on his upper left arm, the valve is attached to a tube which runs though his vein to the top atrium of his heart. This helps the plasma travel through his body more efficiently, and keeps him from being stuck with an IV every other day. They started his plasma infusions last Wednesday, and he goes every Mon Wed Fri for 4 weeks. Then every 3 days for a couple weeks after that. I won't get into anymore of the details of how the infusion is done...it's alot like chemo.

But so far, Aidan is doing great! We have to watch for a blood clot, since he is at a greater risk for Thrombosis to occur...but so far so good. And the membranes in his mouth are already disappearing!!!!!! We go back to his pediatrician at the end of this week for a check up, and hopefully the one in his ear will be receding, too. We haven't got any blood tests back yet to see how long the plasma is staying in his body and if it is increasing the plasminogen levels...but I'm very hopeful! And my lil trooper still keeps smiling and laughing through it all. He is truly an angel.

Thank you all again for the continued prayers and support...it's going to be a rough next several weeks...but hopefully, this will work, at least for a little while. Please keep him in your prayers!

 

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