These past years have been trying with many moments leaving me wondering if I’d ever see this huge milestone in her life. Yet miracles continuously occurred and Phoenix, true to her name, rose through it all, much to specialists surprise and my relief! She is such an inspirational being who has taught me and many around her more in her 13 years on earth, then anyone else ever has or could. She never ceases to amaze me with her old soul views and words of wisdom, or with her unconditional love and concern for others, both people and animals alike. Her positivity never wavers, and she gives strength to others even when in the direst of circumstances herself. Her ability to forgive and empathize is astounding and humbling. I'm so proud of the young women she is becoming...even with that teenager attitude coming thru at times! Raising her these past 13 years has been an incredible gift and blessing. I look forward to celebrating many, many, many more milestones in her life with her, to continue to grow together and for her to teach and remind me what is truly important in life!
HAPPY 13TH BIRTHDAY to my now official teenager!!
These past years have been trying with many moments leaving me wondering if I’d ever see this huge milestone in her life. Yet miracles continuously occurred and Phoenix, true to her name, rose through it all, much to specialists surprise and my relief! She is such an inspirational being who has taught me and many around her more in her 13 years on earth, then anyone else ever has or could. She never ceases to amaze me with her old soul views and words of wisdom, or with her unconditional love and concern for others, both people and animals alike. Her positivity never wavers, and she gives strength to others even when in the direst of circumstances herself. Her ability to forgive and empathize is astounding and humbling. I'm so proud of the young women she is becoming...even with that teenager attitude coming thru at times! Raising her these past 13 years has been an incredible gift and blessing. I look forward to celebrating many, many, many more milestones in her life with her, to continue to grow together and for her to teach and remind me what is truly important in life!
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As we knew would occur at some point, Phoenix's health recently took a turn from it's stable and healthy level. Doctors had warned us as I posted before, that her medical condition would at some point worsen...it was a matter of when not if. That time has occurred. A few weeks ago Phoenix's liver levels returned concerning. Upon more tests and seeing the doctors in calgary... we were told that the sludge in her bile ducts have returned. They've put her back on bile production medication, as we did last time without success, in the hopes maybe this time it will work. Just got the call tonight on a sunday that this friday they have her booked in for an ultrasound. On thursday she will be turning 13.... she's not impressed with starting her teen years with medical stuff. So...we may be facing as we did a couple years ago and be doing many many many trips to calgary and edmonton for surgeries and hospitalizations.. and once again the scary life threatening sepsis risks. Phoenix started hyperventilating when the doctor was telling us what we were looking at again... she remembers the nightmare that had all been. Took a bit to calm her down...but she's back to thinking positive through it all.. wish I was as capable of doing so. It terrifies me to go through it again....to come so close to loosing her again that only miracles pulled her through them at the time. I'm not sure there's a max on miracles... but we've used more then I can count at this point in her life!
So...I suppose we prepare ourselves mentally for the worst..and hope for the best. We've pulled through everything life has thrown at us so far....and we'll continue to do so :) It's been nearly a year since my last post!! And it's definitely been a roller coaster of a year. So many HUGE changes in our lives. Not all good... not all bad.
Our Family unit consists of 2 and a dog once again and has for the past year now. We've moved in with my parents as I am financially unable to afford the cost of living in this city... my paycheques in a month wouldn't cover the rent... and we refuse to let go of Frog the dog, who has been integral in Feeny's healing when she suffered through her past medical issues. And he's an integral emotional support for myself, and awesome mountain hiking buddy! Since our move though Phoenix has flourished!! She suddenly gained an independence within the first month that she never showed an ability for! She instantly made new friends that she's kept and she hangs out with after school times and talks on the phone with them. Something she never seemed to be able to build fully before! Phoenix started junior high in september and has been doing amazing!!! Her grades, her socialization skills, her independence and self confidence has grown by leaps and bounds! I've been in awe of the incredible positive development in her! In the summer through fall we went on many adventures and both grew as individuals in finding who we really are. It was definitely a summer of discovery and independence for us both! In October She went to DISNEYLAND! For a children's wish trip she was nominated for thru the child development center! In ONE single day she and a huge group of kids went to disneyland, they flew out in the morning and was back after midnight! It was a long and tiring day but she came off that plane bouncing off the walls still!! haha Her health through all this remained well...and gave us this freedom and fun that neither myself as her parent and caregiver, or herself as the dependent child, had a chance to experience. We will forever be thankful for our summer of discovery and freedom.... especially now as her health has taken a turn. HAPPY 6TH LIVERVERSARY PHOENIX!!! She has now officially had her new liver HALF her lifetime! 6 more years then I would have had with her had a family with courage and heart in the depths of their grief not said YES to organ donation and in saving up to 8 other children’s lives! Because of that family’s bravery and selflessness, my daughter is here today and is maturing from a child into a young lady. I get to spend every day with her and watch her grow and flourish and encounter life’s typical ups and downs and help her through them. I get to help her achieve her goals and dreams and be proud of how determined and mature she is. And be in awe of her as well. I often wonder how such an incredible child came from me! She has taught me so much, and I’m sure has much more to teach me! I am so thankful for the gift of life we were given! We treasure it every day, but especially on this day that the big surgery was done, and her life hung in the balance with us not knowing what percentage she’d fall into and if she’d come out of surgery. A family lost their loved one, and I regained one. We celebrate her gift of life today, but we also give thanks and grieve for the family that lost their child and made a life changing and lifesaving decision for others. We will forever be in their debt and will forever treasure this gift they gave us for however long it lasts and beyond, for without it, today and all the days before this would not have been possible <3
April 10 Feenys new chest brace. The $1000 contraption that's in the testing phase still. Feeny gets to be the guinea pig and help make the changes needed to make it comfortable and still functioning to push and maintain her ribcage in place. Oddly enough despite how much bigger it is then the last one, she likes it and wants to wear it! April 16 HAPPY 12th BIRTHDAY to my Miracle child PHOENIX!! I can't believe she's a preteen now! I can't believe looking back on all we've been through and how close to loosing her at times we were, that we've now made it to this milestone birthday and did so with her healthy for once! LOL I'm so incredibly blessed to have been chosen to be her mother. I needed her as well even though I didn't realize it then... I needed someone who I could look up to and who could teach me things that only a child can on how to survive in life and have the determination and positive attitude to fight through everything, no matter what. How to live in the present and look forward to the future, and never dwell on the past. She has taught me more then I have probably taught her on how to be a better person! She is my inspiration and my reason for living! Birthday Breakfast!! These past few months Feeny has had several bouts of illnesses, non that needed hospitalization or treatments thankfully though! But an unusual amount....Frog the dog made sure to take good care of her on those days :) For Easter my mom took Feeny and I with her to surprise my 85 years young grandma with a visit! We nearly gave her a heart attack at her doorstep! But afterwards, she was happy to see us, and us her after so many years away! It was entirely worth driving thru the snowstorms for 14 hours! 4 generations <3 Feeny getting close watching the deer watching her in BC On our way back from princeton BC visiting family for easter, we stopped in golden BC to surprise feeny with a visit to the Northern Lights wolf center! She was too young to do the wolf pack walk, but she was privelaged to touch one of the wolves that was coming out for the pack walk! Another check off her life experiences to live list!! She also got to see a buffalo herd up close and tried to feed a few!! No fear of anything, hanging half in the pen over the fence and all! I'll back track the last few months appointments and events that occurred from oldest to newest, probably in a few separate posts :) Feb 11, 2014, Today poor Feeny endured 2 HOURS of dental work doing the final Root canal, with NO freezing! (her stubborn choice!!) Needless to say this time it wasn't so easy as the last ones...she got her gums and lip accidentally cut...It was much harder for the dentist as usually they are frozen and little things like that aren't registered...unfortunately she felt everything and some! But she braved through it, and let them continue, eyes pouring tears at times, but still refusing freezing! Found out there's a high risk of her two front teeth chipping off as they are shattered and weakened. They suspect she will need an implant in the knocked out one when she is 18. Also said if she becomes too self conscious about the yellowing of her teeth from the injuries they sustained, she can't whiten the outside, as it's an internal discoloring, but she may be able to look into a treatment that opens the tooth and injects bleach to help. Not something we need to worry about right now tho...but I suspect as she hits more into her teens she will become more conscious then than she is now about it. But for now we are finally DONE with the teeth from her horrible injuries back in June!! Next month we will see the specialists about her still not returned to normal hearing and balance issues. Hopefully some answers then.... and hopefully no more issues from this... but only time will tell for the rest as she grows and we see if it affected the growth plates and if she needs surgery to re-break and shorten the jaw bones. March 5, 2014 Feeny was told today when she saw the surgeon about her ribcage, that if she's content with where her ribs are now (not fully back in place) and not self conscious about the shape of them, then she could reduce how often she wears her chest brace. After 4 years of needing to wear it 23 hrs a day, she was pretty stoked to drop down to night time wearing only! Now just need to book the appointments in Calgary to fit and build her a new brace to accommodate her growth developments, something they haven't had much experience with is chest braces and girls...so she'll be their guinea pig! lol AND she drew up her two weeks of medications into their containers all on her own with me supervising!! HUGE accomplishment for her to remember what meds are given when and what they are for! So proud of how responsible and mature she is becoming! Someone is a tad excited to be done with wearing her chest brace after 4 years! Well... Almost done... Now instead of 23 hrs a day wearing it, she only needs to wear a new one that will be built for her at night as maintenance....so as she grows her ribs won't start to push out and peak badly in the middle again. Progress finally after all these years trying to fix what her enlarged organs and the liver transplant had done to her ribcage March 11, 2014 Saw GI doctor today at childrens hospital, was told everything looks great liver wise for feeny! He took a look at her scar on her stomach and noted the one side that is thicker in width and sinks in a bit with a fold almost to it in the corner, he said when she is older she can have plastic surgery done on it in which they will open the scar up and resection it and sew it up again, and it will be covered. It’s not an issue for her right now, so not a thought we’ll entertain anytime soon! Lol She’s had enough surgeries for now! Our awesome GI doctor is leaving for quite awhile we were told, and someone will be filling in for him though until he returns. I informed feeny that meant she is NOT allowed to get sick or do anything that’ll cause her to need a doctor until he is back! Haha We were very happy to hear the good news on her health though! Now to wait for her appointments for hearing tests and ear specialist to deal with her balance issues from last years injuries. Her chronic back pain has returned as well as her knee cap popping out despite her continuing physio at home everyday, but we aren’t sure how to deal with it, as she can’t have anti-inflammatories, and Tylenol is hard on the liver and useless with back pain and headaches, which she’s been getting more of as well. I’m hoping it’s just because as she’s maturing her hips are widening and causing the stress on the back causing it and it will reduce in time on it’s own. March 27
Just finished 2 of Feenys 3 apps today. Her hearing test came back fine. The ear specialist unfortunately gave me bad news... He doesn't think her issues are related to the ear. Her symptoms he said are that of a cerebral brain injury. He's referring her to a neurologist now... My heart is breaking that this injury last June has and will continue to affect her for life... And now in a much more serious way...with permanent brain damage... Lunchtime and a break before we attempt to find the next medical center and get her fitted for her new nighttime chest brace... We had to go to edmonton end of april for a few days to do her annual liver and kidney check up. She was unhappy with all the pokes and tests, but was a trooper getting thru them and being starved for some! We made the most of the trip and visited with friends and got some horses and Irish wolfhound cuddles in too! The doctors were happy with how she is doing liver wise, and I'm still awaiting to hear about her GFR kidney test results. Her bone density tests came back great as well as they have been for several years now and are at her perfect chronological age. It was interesting seeing her pictures of it 6 years ago and now...her ribcage looked nearly perfectly round it was so enlarged from her organs pushing it out, and her spine had a curve in it from the pressure and leg length difference. Her ribs are narrowing, or she's growing into them! and her spine is much straighter! Some pictures of Feeny with her favorite Irish wolfhound Quinn <3 She was ecstatic to learn her application for a wolfhound was approved! She has had all her christmas and birthday gifts be money for her wolfhound fund. She takes in ours and her grandparents bottles for recycling to get the money for it. She saves all her allowance to put towards it, and saves canadian tire money as well :) She has been so dedicated and sacrificed actual gifts in determination to raise the money she needs for a wolfhound and an emergency fund for the first year to cover food, vet, basic care needs that I required she have if she was to get a giant breed. She's more then half way to her goal and been approved to be on a list to wait for one hopefully within the next year :) She has proven herself in caring for our own dogs and foster dogs that come through, and she makes time for feeding, medicating, letting out and cleaning up after them every morning and evening. She is more responsible then most adults when it comes to the dogs! I am very proud of her dedication and perseverance in obtaining her dream! I'm happy to help her reach it and learn the valuable lessons she is in the time and effort of years it will take her to achieve this dream, but never giving up in it or being upset at not getting other gifts at holidays! Irish wolfhounds truly are the gentlest of giants <3
Happy New Year Everyone! I hope this year brings more joy and success to you all :)
The last few months have been fairly quiet. Feeny had a few dental procedures done for root canal on the one tooth, as well as fixing the chip in it. Which they did all without any freezing each time as Feeny would refuse it and just toughed thru it all! She has one more dental appointment in February to work on the tooth that was knocked out and that should be when they will do the final root canal and seal it permanently. The dentist is still unsure if it will take, and says to give it a year before we are guaranteed that it’s taken. But so far so good! Feeny has also adjusted to her jaw being a bit off so we haven’t had to pursue that any further. In November she ended up sick with strep throat and had a battle for several weeks to get it under control. After 2 set of oral antibiotics failing they had to resort to IV antibiotics for 5 days and then back to oral ones for a week, which seems to have finally gotten rid of it. She ended up with a head cold about a week after finishing the last round of antibiotics but she managed to recover on her own and it didn’t develop into an infection. She had a check-up in December with her GI team, and they were happy with how things were going liver wise so far. Her tacrolimus levels were lower than they’d like to see them, but decided to maintain her lower dosage so that the meds aren’t causing as much damage to her kidneys as they already have. We had to do blood works again to see where her levels are at and if she is holding steady or has dropped even more. With having her tac levels lower than normal, helps her body fight off colds and infections as well, as her system isn’t as suppressed. Which is needed right now with flu season in full blown chaos right now. She of course has her flu shot, but it’s not a guarantee…and last year on new year’s day she was in the ER with a later confirmed diagnosis of H1N1 despite her shots…it helped to keep it from becoming deadly for her though and she recovered on her own thankfully. Her GI doctor also wants her to be seen again by the ear specialist and do hearing tests as she is still having balance issues and muffled hearing that she shouldn’t have at this point from the accident still. So we’ve been given referrals for that. She is also being referred to someone about her chest brace again as well as her previous surgeon is no longer there. All in all, much quieter months these last few then what the rest of last year had been! I'm hoping for continued good and bettering health for her in this new year! She needs a break from it all for once! Fingers and toes crossed this is going to be a good year with no more medical crises! Sorry for the delay, for weeks I was unable to update and sign in to the site, tried again today and it FINALLY let me!! So here are the last updates that have occurred...
(AUGUST 14 AND 15: Phoenix needed to do a follow up with her blood pressure issues and kidney damage issues, so we followed up with a dr in Calgary children’s that we had seen before for her blood pressure issues, and when she had problems with UTI’s for a couple years after transplant. We drove up on the Wednesday to get her hooked up to a 24hr blood pressure machine and to get her bloodworks done up there. Then we drove back home instead of staying there overnight. Drove up again Thursday morning to have her machine data read and check bloodworks test results. Dr says her Blood pressure looks good though, she had a least 70% acceptable level readings, so no issues while healthy, we'll continue to monitor, and do other tests to determine more into her kidney functions. AUGUST 20: Saw the dentist again to do her teeth cleaning and full x-rays. Dr. was still not optimistic on saving the front 2 teeth...they are discoloring even more since the last she saw her a couple weeks ago. X-rays don't show much, but said she may still have other teeth at risk and that time will only tell. And the big discovery which came as no surprise to me with the complaints Feeny was having-her Bite IS off. Even from their previous records of her crossover bite, it’s off more than before. They tested her jaw and teeth alignment and as Feeny said the teeth catch on the sharp edges of her molars and she has to slide her jaw to adjust before she can fully clamp down. She also has limited mobility in moving her jaw side to side. Tenderness in the TMJ joints is still prominent and pain in her one ear where she still has hearing loss is tender to touch or move her jaw too much with. And she has also been grinding her teeth at nights because the jaw joint is off. Plastic surgery may not be able to help they said. It's also beyond basic dentistry...they may need to have her see an orthodontist. I of course have absolutely no coverage to see one never mind do anything. AUGUST 26: We had a 4:30am start to get up and hit the road for Calgary for Feeny's first early appointment. Saw the ear specialist to see why she is still having some muffled hearing issues and pain in her ear, he managed to get out a huge blood clot from in her ear....was kinda neat to see on the tv from the camera. He doesn't think there should be any reason why she is having balance issues still (can't close eyes and stand without falling, uses chair in a shower) or the muffled hearing issue still if her hearing tests came back fairly fine. He did say there may be a bone out of place pushing in the ear which is why she's having pain in the upper jaw joint and in the ear to touch even with a finger or Q-tip. But it's not his area of expertise. So hopefully on Thursday when we see the plastic surgeon we'll know more. She saw Neuroscience in the afternoon to deal with her inserts in her shoes. They're happy with how it's balancing her out with the leg length difference. They were also happy with her physio and the results she's been getting with her kneecap popping out issue. So that was a good appointment. Unfortunately her back is unexplainable still, but she'll see a specialist in a month or so about it finally. She's been having daily hip and back pain and can barely walk when she wakes up in the morning. Had her GI team nurse call as well, her tacrolimus levels are too low...so need to retest her blood in the am to see what they say, if still bad then we'll need to up her dosage. AUGUST 29: Feeny saw the plastic surgeon today. He said it could take a year to fully heal from her injuries so he isn't surprised she is experiencing pain, muffled hearing or balance issues. Said that jaw injuries tend to affect the ears and hopefully in time her body will adjust around it. In regards to her bite being off he said orthodontics and braces are our options only (no coverage tho), said the extent of the trauma she suffered often never fully heals properly and is never 100% again after. She needs a nightguard as well to prevent her damaging her teeth with her grinding at night...that's complicated as she is growing and can't have something form fitting like that on her teeth forcing them in a mold interfering with the growing and spacing of mouth and teeth. It's also not covered. If she is still having issues with pain in the jaw and ear in 6 months they'll check her out again... until then it'll be a wait and see scenario. My heart hurts to know the amount of pain she will endure for life from this…possible disfigurement as surgery is always too risky to do with her to fix her jaw alignment if the growth plates are affected, as well as possible loss of teeth. Her emotional and mental trauma over this worries me too…she has had nightmares of this incident reoccurring and is fearful of returning to the school and encountering the same thing again. I’ve returned to work…but at cut hours of 99/month…with more out of pocket fuel cost expenses. I’ll not earn my benefits back either being part time. I was denied EI for those two months down caring for Feeny, even under the new coding for parents caring for critically ill or injured children. They still are like the compassionate care leave criteria’s, and must be life threatening and faced death to qualify. The surgeon didn’t consider it so from his perspective, despite her risks as a post-transplant patient for surgery being immunocomprommised and high risk of deadly infection particularly with her recent sepsis history and even stopped breathing during the one surgery. This “accident” has cost us so much….and will continue to do so for life for feeny personally… it’s ruined so much of our lives altogether…and not just for her medically, and me work wise and financially now and in the future- but in personal areas too- I had made plans, saved and looked so forward to attending a wedding in the United states for our friends who were counting on us attending as so few could do so for their big day, it was to be a first time vacation for myself and finally meet my biological father’s (who died when I was 7) side of the family there…unfortunately that of course due to finances had to be cancelled… we miss our friends once in a lifetime wedding and any chance of meeting my family. Part of me feels so devastated and more defeated by these injuries and all its affected more so then her liver issues have. Maybe because we were finally free and stable after so long of her medical liver stuff after all those months of fighting so hard and finally relaxing those couples weeks and feeling optimistic- and this happened to her and ruined so much and crushed so many plans and hopes and literally destroyed my job etc... destroying future prospects and hopes and plans and future abilities financially. I'm going to really try and focus on the positives though from here on out...she's alive, and we've overcome hopefully the worst of it all. Everything else we can figure out and find a way to make work hopefully...so long as she is happy and doing well as possible after this nightmare is all I can ask for, it could have been worse- she's still here to hold and love and help build a future for <3 Feeny had surgery last week on tuesday to finally remove the wiring and metal brackets keeping her mouth wired shut. 40 days since she last could open her mouth! She had suffered temporary unexplained hearing loss in both ears tho, and the bad ear was barely hearing at all. They suspected it was from the swelling in her jaws, and that seems to be confirmed as after a couple days her hearing returned to what it was before the surgery when the swelling went down. Her hearing in the one ear is STILL affected and muffled from the initial injury though and she will be seeing the ear specialist at the end of the month to look into that more as well. Also she's not quite fully healed in her jaw area... So another 2 weeks from wiring removal absolutely no chewing, staying on liquid diet and resting...
Then on Thursday we saw the dentist...and received more bad news...her other adult top front tooth next to the one that was knocked out, is discoloring and showing that it may be dead as well, and we may lose that tooth too....it's badly damaged with multiple shattering fractures visible on the surface to the normal eye. They did a root canal on the one tooth that was knocked out and will continue to do root canals every 3 months for the next year and a half in the attempt to save it. The doctor did not seem optimistic though :( Doing the root canal and keeping her mouth clamped open when it hadn't been opened in over a month except for a day and a half, caused her a lot of pain the next day and swelling...even her ear lobe swelled up! She will go in in two weeks to have a good cleaning done on her teeth that is badly needed now after more than a month unable to brush them with them wired shut. As well as x-rays to do in the rest of her mouth to assess the other teeth and the damage to them. Hopefully she'll be healed and not so stiff then...as they'll need her mouth opened much longer and wider than when they worked on the front teeth. In october she will go back as well to fill in the chip on the knocked out tooth and fillings on any other teeth that they may find. In november she will go in again for another root canal on the knocked out tooth, and possibly start on the other front tooth, and any others that need it as well to repair them. It may take years of constant dental work before we are done IF we manage to save all her teeth....if not...it will be much longer and costly... :( |
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