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description=Luke was born April 25, 2007 with TGA (D-Transposition of the Great Arteries) and a Ventricular Septal Defect. He had open heart surgery when he was five days old. He is thriving and happy and truly our little miracle!;

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Text of the page (random words):
o are just starting this heart journey with your baby or those who are looking for others who share their story luke is 10 and in 5th grade he sees his cardiologist on an annual basis and has had a very steady path of health he has mild neo aortic insufficency which means he has a mild leak in the aortic valve and the neo just means they placed the aortic root in a new spot when they did his open heart surgery we ve been following this leak for years and it hasn t changed yet luke was on a medicine called enalapril every 12 hours for years to hopefully lower the pressures in his heart and preserve valve function our cardiologist decided to take him off the medicine this year when luke was on enalapril he got tired easier was bothered by heat and dehydration very easily and suffered from migraines those issues seemed to resolve as soon as he stopped taking the medicine luke s cardiologist talked to me about the possibility of learning disabilities that can be related to having been on cardio pulmonary bypass heart lung bypass machine during open hear surgery luke s condition d tga carries a high risk of adhd luke had greater complications than most with d tga suffering a coronary event heart attack after his first open heart surgery and he had to be rushed back into surgery and put back on the bypass machine for some time luke did have delays with his gross motor development and we worked with eci early childhood intervention to get him physical therapy until he caught up i feel visual spatial visual motor skills have always been a challenge for luke kicking a ball hitting a t ball crossing midline his skills with executive functioning are also an area where he has struggled multiple step directions remembering steps etc inattention has been a big issue since starting kindergarten i took luke for a neuro psychological evaluation at the end of 2nd grade we found that luke has pretty severe adhd pi primarily inattentive he was also diagnosed with dysgraphia which is a neurological disorder that makes it hard physically to write it s in the same family as dyslexia we re trying to get him as much support as possible at school and we re hitting it hard at home too we also learned luke is above average intelligence and above average in a lot of other areas he s bright creative empathetic and has a really great sense of humor he will do great in life and is capable of anything he puts his mind to having learning problems is not an indicator of intelligence and does not mean your kid is lazy if these issues affect your kid they likely have to work harder than other kids to do what comes easily for others and that s frustrating and can hit confidence we went with an iep for luke this year so he s in the collaborative classroom where there is an extra teacher in the classroom during math language arts science and social studies to move around and help all the kids who need extra help this is a resource available through a federal program called idea the other kids in the class don t know who the collaborative teacher is there for because they help all the kids but really focus in on the kids with the ieps he has received occupational therapy and vision therapy which have made a world of difference for his in his ability and confidence we re getting help but realize he ll still need extra time accommodations tutoring and support as he moves through school like a lot of kids do who haven t had open heart surgery if you suspect there is a problem don t delay getting your child evaluated there are tons of resources available privately and at school federal idea program to help children overcome these issues new research shows that many children with congenital heart disease chd are at risk of developmental delays that can affect learning behavior and social skills but there is good news most children with chd do not have severe developmental issues and can be helped with the appropriate help at school how can you help your child understand how the chd may affect your child read the american heart association article published last year on neurodevelopmental outcomes to see the connection between these and chd and consider having your child tested using the guidelines provided make sure you understand how best to communicate your child s needs with the school you need to be familiar with early intervention 504 plans and individualized education plans ieps to ensure that your child gets the best help possible below are some resources i ve found developmental_issues_and_chd_2013 overview_of_services_ei_iep_504_2013 sample_504_plan_2013 anyhow i wanted to share what i ve learned and encourage you to continue advocating for your kid and getting help and resources where needed that s all for now god bless 2 comments luke is 6 1 2 and doing great november 14 2013 november 14 2013 craftyorganic luke photos congenital heart disease d tga tga transposition of the great arteries i don t find the time to update this blog often but wanted to put up a few photos and say luke is still doing great no changes since the last update just getting big 2 comments it s been a while january 11 2013 craftyorganic luke photos hi it s been quite a while since i ve updated this blog luke is no longer babyluke but instead a rambunctious 5 year old who started kindergarten this year his heart check ups have been really good with minimal changes over the years he does have a mildly leaky aortic valve for which he takes a medication called enalapril every 12 hours 7am and 7pm our cardiologist put him on the medication when he was 2 because studies show lowering the pressures in the heart can help preserve the valve function other than that he is doing really well i can t say i don t worry a lot however i know that it s normal i never hesitate to call or visit the cardiologist if i m worried about something as i d rather have my mind put at ease luckily we ve got a really wonderful doctor who takes my concerns seriously and talks me down when i need it ha anyhow here are some updated photos of our precious luke and family since i last posted we ve added another baby girl to our family both of our girls are heart healthy if you ve found this blog because you re just starting your heart mom or dad journey please don t hesitate to contact me there is a great wonderful caring heart parent community out there i d love to introduce you to god bless 1 comment luke s 3 1 2 year photos december 14 2010 craftyorganic luke photos leave a comment precious photos november 18 2010 craftyorganic luke photos leave a comment elizabeth comes home november 13 2010 november 13 2010 craftyorganic luke photos elizabeth grace came home september 25th she was discharged from the hospital at a whopping 5 pounds 6 ounces leave a comment elizabeth grace august 10 2010 august 10 2010 craftyorganic luke photos elizabeth is continuing to do well in the nicu her breast milk feedings have increased to 12ml every 4 hours and she is tolerating them well she has gained a little weight back and was 2lbs 7oz this morning she is on room level oxygen and is no longer on the cpap she has a nasal cannula and has been doing well on it she is still having episodes where she forgets to breath but her alarms go off the nurses rub her back and she snaps right back as an example she had five episodes since 7 30pm last night but the doctor said for her age size and being on the nasal cannula having 5 is actually not bad she is on a higher dose of caffeine to help stimulate her breathing and the hope is as it builds up in her system she will have fewer of these episodes if the episodes don t improve or get worse they will put her back on the cpap for a while until her nervous system matures more i am able to hold elizabeth twice a day for kangaroo care which is direct skin to skin contact she responds well to the kangaroo care her stats all improve when i m holding her i m sure my stats improve too luke isn t allowed in the nicu only 18 and older are allowed so he hasn t been able to see his baby sister yet we have shown him photos and talk about elizabeth all the time though he is a bit confused still but excited to meet her leave a comment elizabeth grace hundley august 7 2010 craftyorganic luke photos hi everyone we are happy to announce the arrival of our new addition elizabeth grace hundley excited to enter the world elizabeth grace a little miracle at 2lbs 9oz and 15 4 inches long arrived just shy of 10 weeks early on august 2nd it was quite a traumatic time for both elizabeth and i though we are both doing well now i suffered a placental abruption just as we were getting ready for bed sunday night the ambulance arrived within 5 minutes and rushed me over to st david s hospital downtown because of the massive amount of bleeding the doctor rushed us into surgery and delivered elizabeth elizabeth came out crying and feisty by the grace of god i had a difficult time in surgery because besides having a placental abruption they discovered i had a rare condition called placenta accreta the placenta had grown into the muscle of my uterous and caused those contractions that play a role in minimizing blood loss to stop i apparently lost so much blood i didn t have protein plasma in my blood to stop bleeding and i was hemorrhaging after having had three blood transfusions and two plasma transfusions our wonderful and talented doctor was able to save me i am out of the hospital and feeling better every day elizabeth is in the nicu breathing on her own because she was born at 30 weeks her nervous system isn t fully developed she has periodic episodes of apnea and bradycardia to help her body to remember to breath she is wearing a cpap the cpap does not breath for her but rather keeps a steady stream of air going into her lungs to remind her body to breath when it forgets in addition she is on a daily dose of caffine to stimulate her breathing she has been doing well and seems to be having fewer apnea episodes each day she has started to take small non nutritional breastmilk feeds to stimulate her digestive system unfortunately she has been having a little trouble digesting the milk so they are proceeding very slowly and carefully overall we are very pleased with her progress and are told we can expect her home in 5 8 weeks jon is keeping busy helping out with the luke working and being a taxi driver to and from the hospital we appreciate all of the well wishes and prayers we ll keep you posted leave a comment luke s school photos june 6 2010 june 6 2010 craftyorganic luke photos 2 comments easter april 9 2010 craftyorganic luke photos 1 comment backyard entertainment april 9 2010 craftyorganic luke photos bubbles are always a hit and when luke gets bored of the bubbles he can eat grass with zoey 2 comments luke flying a kite at the zilker kite festival march 18 2010 craftyorganic luke photos leave a comment potty training in full force march 18 2010 march 18 2010 craftyorganic luke photos luke is making real progress with potty training uh when he feels like it we have tempted him with m m s a cupcake a new train and a tube of plastic bugs he gets m m s for wee wee and a special bigger treat for doo doo he is really into watching his once upon a potty video while he s working on going he loves to sing the songs and talk about what the other kids are doing yeah progress luke eating breakfast while sitting on his potty luke s doo doo cupcake treat leave a comment luke s lunch shenanigans march 18 2010 march 18 2010 craftyorganic luke photos luke was eating standing on a step stool chowing on a giant tomato singing i ve been working on the railroad i got him to sing for the camera but man i wish i had a camera glued to me for those spontaneous moments still very cute though leave a comment new farm equipment december 29 2009 december 29 2009 craftyorganic luke photos luke and ethan had so much fun on the new bikes gram and pop got them for the farm they are so much fun to watch together leave a comment christmas day december 29 2009 december 29 2009 craftyorganic luke photos i woke luke up i tried to be patient but i failed he was a little grouchy at first but after a few minutes of discussing presents santa might have left him he was persuaded to check it out i think he was a little confused at first we had lunch with luke s great grandmother lucille luke was willing to share his trains with her but made sure she got their names correct the real fun started when luke s cousin ethan arrived here they are having a light saber fight ethan is a star wars fanatic notice that luke has the blue good guy light saber luke and zoey are catching their first glimpse of a star wars movie with ethan they were both so spaced watching the movie i bribed ethan to hug luke all it took was one cookie he should have held out for more there were six baby longhorn born in time for christmas they are so cute luke really likes the new buzz and woody toys he got he insisted on hauling both of them around with him for a couple of days now he is mostly taking woody along he s much easier to carry leave a comment luke s first snow christmas eve at the farm december 29 2009 december 29 2009 craftyorganic luke photos throwing a snowball at mom and her camera grrrr he sure is lucky he s so cute 1 comment gingerbread train december 11 2009 december 11 2009 craftyorganic luke photos much more candy went in luke s mouth than made it on the train ugh not healthy or pretty but it was messy and fun leave a comment having fun outside on a cold day december 11 2009 december 11 2009 craftyorganic luke photos this is what happens when i ask for a smile he takes after his dad at least i can catch a smirk as he laughs about his lack of smile for the camera leave a comment setting up the christmas tree train december 2 2009 december 2 2009 craftyorganic luke photos someone didn t want to go to bed last night he cried i want to play with mr steam engine then he said don t do that again i m going to give you a time out 1 comment riding the gator on thanksgiving december 2 2009 craftyorganic luke photos leave a comment silly laughing about shooting mommy november 29 2009 craftyorganic luke photos leave a comment singing abcs and painting november 29 2009 november 29 2009 craftyorganic luke photos leave a comment halloween november 29 2009 december 8 2009 craftyorganic luke photos luke was a park ranger for halloween this year he really enjoyed going around the neighborhood and gathering candy i got away with only giving him one piece of candy on halloween night i put it up and when he woke up the next morning he forgot about it whoo hoo leave a comment luke and ethan houston zoo november 29 2009 december 8 2009 craftyorganic luke photos luke and ethan got to hang out at the houston zoo while we were staying in houston for grandpa david s surgery they got to watch the elephants getting a bath and a sea lion show leave a comment a day out with thomas november 29...