Lauren June (age 9) Propionic Acidemia, Cardiomiopatie & Autism (passed away peacefully at Canuck Place Children’s Hospice from Congestive Heart Failure) Dear Lauren, It has been 2 months since you’ve been gone and we think about you every With Love, Vă rugăm să consultați pagina de web a lui Lauren la http://laurendelima.weebly.com/ pentru a vedea mai multe fotografii și clipuri video. |
Arhiva Categorie: Știri & Anunțuri
Vincent F.
Vincent F.
My most fondest memories of my son Vincent was his strength, courage and the constant happiness that he projected. His favorite things to do were to and I quote “go to the rides or “go bowl” and he loved to be with his family. Even though he battled PA he was always smiling and laughing. It brings me to tears when I think about it but it is something that he taught in all of us that whatever “life” God chose for you, it is much better to live it to your fullest than to give up. Vincent was 10 years old when he lost his battle with PA and we will never forget his beautiful smile and warm heart. “The mention of my child’s name may bring tears to my eyes but it never fails to bring music to my ears. If you are really my friend, please don’t keep me from hearing the beautiful music. It soothe’s my broken heart and fills my soul with love.” |
Kirstyn T
Kirstyn T – updated 3/2016
prieteni Bună ziua PA!! A trecut multă vreme de când am discutat cu multi dintre voi!! Este atât de bucuros să fie din nou în contact prin partajarea povestea actualizată a lui Kirstyn! Pentru aceia dintre voi care nu ne… Voi începe de la început. Kirstyn Paige sa născut în august 17, 2004 și după zece ani de infertilitate și de o sarcină lipsită de evenimente ce a sosit în sfârșit. Când sa născut a început să arate semne de Icter si pediatrul nostru a decis să efectueze unele analize de sange. A revenit cu rezultatele ABO și Incompatibilitatea avea nevoie să fie transportat de o oră la nord de orașul nostru la Shands la Universitatea din Florida, pentru tripla foto-terapie. De asemenea, se întâmplă să fie meu Alma Mater…asa de…GO Gators!!!! (A trebuit să arunc asta acolo!.) Bineînțeles că am fost foarte îngrijorat de acest diagnostic, dar nu am avut nici o idee despre ce a fost la orizont. În timp ce Kirstyn a fost în pepinieră nou-născut la Shands ea a răspuns bine la tratament icter , dar ea a început să aibă alte probleme. La vârsta de șase zile, ea a devenit aproape letargic și a refuzat să asistentă și părea să aibă chiar și un timp greu de deschidere ochii. Am devenit supărat și a cerut asistenta pentru a apela un medic pentru a verifica ei peste. A devenit îngrijorat de respirația dificilă și se decide că ea trebuia să fie admis la NICU pentru evaluare și teste suplimentare. Pe măsură ce ziua a continuat starea sa deteriorat și ea sa oprit de fapt respirație. Din fericire, ea a fost în spital și a primit îngrijiri medicale foarte rapid. amoniacul ei a crescut la peste 700 și ea a fost acidotică. Ea a fost pe dializa, intubat și personalul medical și-a exprimat îngrijorarea că ea nu poate trăi prin noapte. Avea numai șapte zile. Am fost absolut devastat!!
Un medic de numele Dr.. Bernstein a fost de serviciu în NICU și el a avut o oarecare experiență limitată cu boli metabolice. El a chemat imediat la echipă Genetica și după câteva zile am avut diagnosticul confirmat de acidemia propionic. Ea a petrecut nouă și 1/2 săptămâni, în NICU și în cele din urmă a primit ordinele de descărcare de gestiune am fost de așteptare pe! Repede inainte………………………..
Kirstyn este un uimitor ani de unsprezece, care a început școala generală anul trecut. Oamenii sunt atât de dreapta, atunci când vă spun să nu clipească! Cum a devenit destul de vechi copilul meu să înceapă școala generală? Ea a avut aproximativ paisprezece spitalizari ulterioare de-a lungul anilor și, din fericire, nu a avut o intrare timp de optsprezece luni!! Ea este încă tratată la Shands și a dezvoltat, de asemenea, și Cardiomiopatie limită QT lung. Medicii ei sunt extraordinari, iar aceasta echipa medicala a stat de partea noastră întreaga viață!! Ea are un gtube, care a fost introdus în vârstă de trei săptămâni, iar această decizie ne-a salvat numeroase excursii la spital. Kirstyn mănâncă, de asemenea, prin gura și pe cele mai multe zile consumă 100 la sută din mâncarea ei prin gura. gusturile ei schimbă destul de des și alimentele ei preferate dintr-o săptămână nu vor fi alimentele ei preferate ale săptămânii viitoare. Suspin……… Ea iubește ciocolata, cartofi prăjiți, Doritos, Spaghete, ceai si clatite McDonalds dulce lota de sirop și hash browns. Suntem pe baza principiului primul nume foarte prietenos cu personalul nostru local McDonalds. 🙂
Kirstyn are de fapt un IQ talentat și în timp ce ea are capacitatea de a excela în școală, nu se întoarce întotdeauna în acest fel din cauza diagnosticului moderat de ADHD. Ea este în măsură să ia un medicament de bază non stimulent pentru a trata ADHD ei, dar medicul nu va autoriza orice medicamente stimulatoare din cauza problemelor de inima ei. In unele zile comportamentul este o luptă reală , dar ea nu inceteaza sa ne uimeasca cu farmecul ei, spirit și simțul umorului!
Kirstyn este destul de artist si a inceput de fapt, un portofoliu de arta de desene si picturi ei. Ea a luat lecții private de artă și aceasta este pasiunea ei. Ea practică, de asemenea, tir cu arcul cu tatăl ei și se bucură de fotografiere arcul și pescuit ei. De asemenea, ea se bucură de antagonizare fratele ei mai mic, Cason care este în vârstă de nouă ani și nu este influențat de AP. Last year, am primit onoarea de a deveni un ambasador pentru Spitalul Miracle Network Shands pentru copii la UF. Ea are incredibila oportunitate de a se alătura copiilor cu alte dizabilități și am obține onoarea de a împărtăși povestea ei și de a aduce la conștientizare și alte acidemia propionic condiții metabolice.
Noi trăim aproximativ o oră și jumătate distanță de Disney și au avut plăcerea de a întâlni distractiv cu alte familii PA, atunci când au fost în vacanță. So, dacă sunteți vreodată în gâtul nostru de pădure, vă rugăm să ne contactați și să vedem dacă ne putem întâlni prea te!!
Am facut prieteni pe tot parcursul vieții de unii dintre ceilalți părinți PA și experiențele lor ne-au ajutat să navigați aceste ape dificile din acidemia propionic. Pe măsură ce anii mei de experiență continuă să crească speranța mea este că eu pot hep alți părinți, de asemenea. O mare dragoste din Ronnie, Marsha, Kirstyn și Cason.
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Kirstyn T.
After ten years of infertility issues, Kirstyn was on her way! She turned 4 on Saturday Aug 17 & mom said her birthday was bittersweet as it is every year. Like so many PA families, her parents were told in the first week that their daughter would likely not live through her initial crisis. When Kirstyn was born she had ABO incompatibility which is basically severe jaundice, so she was transported to Shands NICU to get her liver to kick in. The first 7 days there, Kirstyn became very lethargic & stopped eating. One of the nurses even scolded mom saying she couldn’t take her child home until she proved she could feed her. The next day Kirstyn crashed, falling into a coma. Ammonia was over 700 & she spent 9 weeks in that NICU, during which time she had a core team of nurses assigned to her because of her rare condition & bleak prognosis.
After that, she went the entire first year without further need for hospitalization, but has had 4 since then. She’s had three blood transfusions of packed red cells. She was diagnosed with mild cardiomyopathy at 18 months, so she has an EKG & EEG every 6 months. Stomach bugs are the hardest thing, causing 2 hospitalizations due to excessive vomiting, ketones & high ammonia. decembrie 2005 she spent 2 days in the hospital for a terrible ear infection that was first misdiagnosed as seizures because she was vomiting then zoning out. Martie 2006 she was in overnight for a respiratory infection & high ammonia. Her mom said “Kirstyn gets sick really quickly! Once she reaches moderate ketones, she will need to go straight to the hospital or her body will begin rapid decompensation.”
Kirstyn had OT & PT her first 3 years through an Early Intervention program. At the age of 3 she broke her collar bone in school because she didn’t reach to catch herself during a fall due to her low muscle tone. She’s clumsy when she walks, but has always been very active. Her mom said “If she gets red faced, we have to give her extra calories or she will spill ketones within an hour of hard play. We learned that the hard way during her 3rd birthday party at the park.”
Last year at age 3, test results showed Kirstyn had reading & comprehension skills of a 6 year old, & counting & number abilities of a 5 year old. She’s going into her 2nd year of pre-k, geared toward medically impaired children with no cognitive delays. She’s quite bold & independent & it’s very difficult to keep her on a task she doesn’t want to do. She loves to sing, draw, & paint. She has very low muscle tone in her hands, so she really resists anything that involves use of hands, like using scissors. Due to her low muscle tone, Kirstyn still receives PT through school. She has a lot of behavioral issues & doesn’t like to listen. Her school has recently considered testing her for ADHD, even though they’re also considering testing her for the gifted program.
She’s just started her first activity, tap dancing & loves it! Recently Kirstyn learned to ride a bicycle with training wheels, which she got for her birthday. Playing on the computer is one of her favorite past times. She doesn’t like her little brother Cason (20 months), & often asks her mom to “Please send him back to the Little Brother Store.” She picks out all of her own clothes & doesn’t care what people think : ) And, she loves to do housework.
Kirstyn eats 100% by mouth except when she’s sick. With a packed lunch from her mom, she eats so much better to at school with friends around. Her mom said “We always know when she’s getting sick because her first symptoms are always spilling ketones and she stops eating. For this reason she has a g-tube“. Like many young children, she has a weird diet consisting largely of french fries, pancakes, hash browns & loves to eat at McDonalds & Bob Evans! Her mom said she likes ketchup on mini frozen waffles & calls them mini pizzas & would eat ketchup on everything (anything mom lets her put it on!) She doesn’t care much for sweets, only an occasional M&M. At parties she’ll tend to lick a bit of icing to feel like part of the group.
As far as potential complications from PA, she’s doing amazingly well. As of this year her doctors said she only needs labs 4 times per year! Her restricted amino acids typically run around the low end of normal, & she’s given a Valine supplement because it’s always run below normal. Her Glycine is typically around 800.
Marsha, Kirstyn’s mom, expressed her sincere appreciation for the support she’s received from the other PA families through PAF, saying “We’ve been blessed to be part of this support community, which I’ve turned to for help on many occasions.” She said they’ve even met a few other PA families because they live so close to Walt Disney World, so look her up if you’re planning a trip!
On behalf of Marsha, Ronnie, Kirstyn, & Cason
Brandon N.
Brandon N.
Our son Brandon started showing symptoms of his illness within
the 1st day of his birth (7-9-98). To make a long story short, he was finally diagnosed at 5 days old at Riley Children’s Hospital in Indianapolis, Indiana. We have a really great group of people who manage Brandon that include Dr.s Wappner and Hainline and a great dietician Becky who I consider my friend. Without them I really don’t know where Brandon would be today.
Brandon has a g-tube and gets almost all of his nutrition through his tube. He does eat by mouth and that mostly consists of Quakes (ranch flavored), and puffed popped corn. Brandon also likes sauces and will usually try anything like that. Now that is enough about the medical stuff.
Let me really tell you about my son Brandon. He is 6 (almost 7). He will be entering 1st grade in a special education class. He has conquered his ABC’s and will soon have his numbers 1-10 down. Brandon loves to play outside and really enjoys being around other kids. He swims with Special Olympics, plays baseball on a Challenger league and can ride his bike with training wheels. Brandon has shown great promise with his vocalizations and with practice I know someday I will hear “I love you Mom.” Brandon has a smile that can melt your heart, but also has the mischievous twinkle in his eye.
Some days, weeks, month’s etc. can be tough, but when that little hand holds yours as you watch Shrek for the 100th time, or when he picks out the same bedtime story every night, or when he is so proud of himself because he finally learned how to blow out a candle…
I know I have been truly blessed.
We love you Brandon, keep up the good work.
Tony, Lisa, Matt and Brandon N.
Valparaiso, Indiana
Amber B.
Chase W.
Chase W. age 22 – updated 4/2020
Au trecut patru ani de când am scris un update despre Chase. He is 22 acum ani de zile și sunt fericit să raportez că face bine și că rămâne sănătos în această perioadă foarte dificilă a pandemiei.
În ultimii patru ani, Chase a necesitat două spitalizări. În aprilie de 2017, Chase s-a îmbolnăvit foarte tare de pneumonie. A stat pe un ventilator timp de trei săptămâni. Nu eram siguri că avea să reușească, dar Chase este un luptător și am avut atât de mulți oameni care se rugau pentru el. Mulți dintre voi ați făcut parte din aceste rugăciuni, și nu vă pot mulțumi suficient. El a fost stabil din punct de vedere metabolic în cea mai mare parte, cu excepția, of course, când este bolnav. Pe lângă medicul genetic și neurologul, vedem un cardiolog pentru sindromul qt lung. De asemenea, vedem un nefrolog și am aflat recent că rinichii lui funcționează doar la cincizeci la sută. În ciuda acestor provocări, Chase rămâne relativ sănătos.
Chase a absolvit liceul primăvara trecută. A fost atât de interesant pentru el. I-am iubit atât de mult școala, dar era timpul ca el să meargă mai departe. Cea mai mare provocare a fost găsirea unui program adecvat pentru el după absolvire. Am reușit să găsesc un program care să-i susțină toate nevoile și am putut obține finanțarea pentru program. A fost o ușurare uriașă!
Chase este o persoană atât de fericită și aduce un zâmbet tuturor celor pe care îi întâlnește. Îi place să primească cărțile de naștere de la clubul de ziua războinicului. Îi place să-și petreacă timpul cu familia, în special, fratele său mai mare Kyle. Îi place să se uite la sport la televizor și îi place foarte mult să meargă la plimbări fiind împins în scaunul cu rotile. Este capabil să meargă singur, dar obosește destul de ușor.
Sper că în acest moment foarte dificil toți membrii familiei noastre să rămână sănătoși. Este un timp atât de înfricoșător, dar a avea o organizație ca aceasta este atât de util. Nu pot mulțumi fundației PA și OAA suficient pentru tot ceea ce fac.
Amy
Mama la Chase 22 PA
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Update on Chase W., age 18
Hello everyone, the last time we had put out an update on Chase, he was ten years old. He will be turning 18 next month! I can’t believe how the time has flown by.
Chase has grown into a handsome young man. He has really lost a lot of baby fat and has gotten leaner and taller. We have had to make adjustments with his formula along the way, but, overall, Chase has been doing really well. He still does not eat anything by mouth except drinks of water.
He currently is a junior at a special education school. He started this school as a sophomore. This was such a great change for him. We tried the program at our local high school, but, it just could not meet all of Chase’s needs. Also, it had 2,000 students, whereas Chase’s current school has 200 students. The program he is in is wonderful. They are really teaching him life skills, and they have a sheltered workshop on sight. Chase has certain jobs he must do every day. The students, along with the staff go out into the community once a week. He, also, receives speech/language therapy, occupational therapy, and aba therapy.
Chase has not been hospitalized for at least five years. Any sickness he has gotten, we have been able to control at home, including a stomach bug. We have, also, finally have had Chase seizure free for 6 months. He is on three medications for his seizures, and they have really controlled them well.
Chase’s physical strength has definitely declined over the years. The doctors want to rule out everything, so a MRI is planned for him soon. He has been fitted for orthotics and this has helped a great deal with his walking. He gets fatigued very easily, and sometimes requires a wheel chair. This is so strange for the boy that when he was younger, you literally had to “chase” him everywhere.
Overall, Chase is very happy. He really enjoys his books, his certain music toys, and watching sports on tv. He likes to spend time with his family especially his big brother Kyle when he comes home from college. He enjoys his extracurricular activities of basketball and baseball, he may not always participate, but he really enjoys being a spectator!
I feel very blessed to be Chase’s mom. He is such a special kid. I am, also, very grateful for the PA foundation, as well as, the OAA.
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Chase W.
Our son Chase was born March 19, 1998. He was our second child and my husband and I were so excited because we were having another boy and Kyle, our older son, was going to be a big brother. We had no idea what was ahead of us. Chase’s story is so familiar to all PA families. By Chase’s third day of life, I knew something was not right. He would not breastfeed and his breathing was very labored. I also noticed an odd smell on him when I held him close. It was late at night and I alerted the nurse, but she just thought I was tired. I insisted that he be taken to the nursery for the doctors to check him out. I remember calling my husband telling him Chase was very sick and this was before anyone told me what was wrong. I just knew something was wrong with him. As a mom, you just know. Sure enough, the nurse came back, and told us that his temperature had dropped to 95 degrees and he was acidotic. Of course, I did not know what that meant. Fortunately, we were in a very good hospital and they immediately started giving Chase medicine that would help him, especially with his ammonia. They did have to transfer him to St. Louis Children’s Hospital, but by Chase’s fifth day of life, the doctors at Children’s hospital were very sure he had Propionic Acidemia. My husband and I, of course, had never heard of it. I just remember asking God to please spare our son so my son Kyle could have a little brother.
Now Chase is 10 years old. We can’t believe it sometimes. In the beginning, the doctors were very guarded on Chase’s prognosis because he had an early onset case of PA and not a lot was known. He has been hospitalized so many times we have lost count, but as he has gotten older, those hospital admissions have decreased. He has just recently started having seizures again, but besides that his PA is very much in control.
Chase is such a sweet boy, he brings so much joy to our lives. He is developmentally delayed, but he is making strides every day. He really lives up to his name, by the time he was walking at 18 months, we were definitely “chasing “him around and have been ever since. We are so thankful to all the OAA families and the PA families for all the support and advice. With this disease, you can really start to feel alone, but it is such a blessing to be able to connect with other families. This past year, we went to our first PA family day, and we had such a good time. It was so nice to be able to talk to other families about g-tubes and other stuff and know that other people totally know where you are coming from.
We would love to talk to other families.
God bless you,
Amy, Jackson, Chase 10 PA, and Kyle 14
Tiffany B.
Tiffany B. – Age 16 – actualizare în februarie 2017
Tiffany este o persoană foarte de ieșire, îi place să vorbească. lucrurile ei preferate din lume sunt Odd Lot, Barney, precum și orice copii arată pe YouTube,,en,Ea este un al doilea de studentie la liceu într-o clasă de educație specială,,en,și convulsii,,en,Ea este total dependentă g-tub,,en,dar este întotdeauna foame,,en,Ea este foarte plin de compasiune pentru alții și este foarte dulce,,en. She is a sophomore in high school in a special education class. Ea a fost în cea mai mare parte stabilă în ultimii ani cu AP ei, doar probleme cu interval QT lung, and seizures. She is totally g-tube dependent, but is always hungry. She is very compassionate to others and is very sweet. Este într-adevăr nevoie de mult pentru ea obține în jos.
Hi, my name is Tiffany, I am 8 years old, I am in 3rd grade at Lithia Springs Elementary. Some of my favorite things are Barney and puzzles. I have a lot of delays, but thats ok, I am in a class a school where all the kids with me do too. I don’t eat by mouth, I have this cool tube in my tummy and everything I need my Mom or Dad gives me through it. Can you eat while you are asleep? I can. I have not been in the hospital for about 3 years now. That is great for me, I hate the hospital and all the sticks.
I have an older sister, Amber, who also has PA. I think that she is the coolest thing on earth.
God Bless,
Tiffany B.
Georgia
Gabriel L.
Hi, our son Gabriel was born in London. He was diagnosed with propionic acidemia at 2 weeks of age after spending his first hours of life hyperventilating and with severe acidosis and high ammonia. Luckily, the medical team at Great Ormond Street Hospital for Children was very good at stabilizing him and at diagnosing him very quickly. Despite never showing actual fits, Gabriel was then diagnosed with infantile spasms (a type of childhood epilepsy) at 5 months of age after deteriorating progressively. We were again very lucky that he responded well to treatment with vigabatrin. He was weaned off medication at one year of age and has been seizure free since. At that same age, he stopped eating by mouth completely and a g-tube was inserted in his stomach for feeding. His formula currently comprises pediasure, polycose, XMTV1, vitamins and flax oil. He is been very stable metabolically for the past two years and is been followed up by the metabolic team at Children’s Hospital of Philadelphia every six months. Gabriel’s development was very slow until 18 months of age but he has made tremendous progress since he started therapies with the Early Intervention Program when we moved to the United States. He just transitioned to a special education pre-school program where he continues receiving OT, PT and ST. Since he started school, his gains have been really amazing. He just started talking and is able to comprehend perfectly and speak words in all three languages he hears. He has also gained cognitively and matured a lot. He has still a lot to catch up being his major challenges his low tone and his speech but we embrace his enthusiasm and effort and try to offer him as much support as we can. —————————————————————————- Updated 9/2015 – Gabriel – 13 years old As is often the case with so many children who are born with an organic acidemia, Gabriel’s first year of life was full of difficulties and hospital stays. After his initial crisis at 24 hours of age, Gabriel had lots of episodes of metabolic decompensation, and high ammonia levels, compounded by undiagnosed epilepsy (infantile spasms). Nevertheless, he started to stabilize around the time of his first birthday, and you can check out a summary of Gabriel’s first five years of life in a previous report we wrote for PAF.
During his first year of life, Gabriel spent 9 months with a nasogastric tube, which was so uncomfortable that it greatly contributed to his decision to stopping eating. But he got a G-tube at 15 months of age, and quality of life improved, not only for him, but also for the rest of the family. Through the G-tube, we started managing him much better at home because we did not have to rush him to the hospital every time he started throwing up. He became even more stable at the age of 3, and he started preschool also then. At that time, Gabriel didn’t have words and was incredibly delayed in all domains (especially motor and language) but he has overcome a lot and has been steadily progressing ever since. This was a little miracle to him thanks to an amazing teacher. Intr-adevar, one very important thing for us is that Gabriel has not stopped developing, even though he makes progress at this own pace (meaning, very slow!).
The other little miracle we experienced with Gabriel is that at the age of 6 we found a wonderful feeding therapist (who was actually a special-ed teacher with experience in feeding issues from the behavioral point of view). She taught Gabriel how to eat (after 6 years of being 100% tube-fed). It was a very slow process but Gabriel now eats like 50% of his nutrition by mouth with a very wide variety of (very healthy!) foods: rice, pasta, vegetables, fruits and so on, everything with low protein, although he also eats the occasional egg or fish sticks. The reason why he only eats like 50% by mouth is because he still has very poor oral motor skills, and is very slow chewing and swallowing. Regardless, the fact that Gabriel can eat by mouth has helped tremendously to normalize our family: we go more often to restaurants, and Gabriel is happy to seat at the table with us and even request his own food from the menu. He has gained so much confidence as a result of eating by mouth! In practical terms, the biggest challenge that Gabriel faces right now is his executive function (he has very poor coordination and motor skills, although he can run relatively well) and his language (he is diagnosed with a language disorder and although his IQ is a bit low, the psychologists think that part of the problem is his severe language issues). As a result of this, Gabriel attends a special-education school with highly individualized education. His class has two teachers and seven other children, and Gabriel still receives a lot of therapy at school (OT, PT, ST).
What is crucial about Gabriel’s life is that he is a very happy child. He loves water and has been learning how to swim for two years now and is able to execute quite a nice stroke (although the coordination with breathing is very difficult for him). In the past two winters he has also been trying adaptive ski and has absolutely embraced it. He has been traveling quite extensively around the world since he was 2 months old (we go often to Mexico and Spain to visit our families, and he loves playing with his cousin Marifer). Last year, the Make-a-Wish Foundation granted Gabriel a trip to Japan. He wanted to visit Tokyo, the city where Lightning McQueen (from the movie “Cars 2”) races in the middle of the night lights. It was an absolutely amazing experience and a very beautiful memory that hopefully will last forever in all of us!
Looking forward, we think Gabriel’s life will be very challenging, as he is unlikely to be able to live independently. Totuși, we feel blessed that he is such a kind and caring child who tries to enjoy new adventures, no matter the challenge. So, we try not to think too hard about what it will be, but focus instead on who Gabriel is and what he does right now, taking one day at a time!
Please, feel free to contact us if you would like to learn more details about Gabriel’s management or activities.
Cheers,
Marisa Cotrina and Juan Carlos López |
Lucy H.
Carson A.
![]() Carson A. We adopted Carson at birth and we have been blessed ever since. He’s the most amazing little boy! Carson is so silly and makes us laugh all the time. Carson has a 16 year old sister and a 19 month old brother. He is a very happy little boy, is extremely active and he enjoys music a lot. It’s amazing how much rhythm he has at such a young age. We think he will probably be a famous musician some day.
Carson will be Three years old on June 15th 2006. He was diagnosed with PA at three weeks of age by Doctor Jose Abdenur at Children’s hospital of Orange in California. We live in Laguna Niguel, California. Carson is doing very well. He is about 9months delayed in speech and cognitive. Physically he is only a little delayed because of low muscle tone but seems to keep up pretty well. He stopped eating around 9 months old and has been eating strictly by G-Tube ever since. He will put some food in his mouth and suck on it but never really swallows anything. He likes primarily salty things. He drinks water from a bottle and we have just graduated to a sippy cup. He currently weighs 36 lbs and is 37 în. tall. His diet consists of 126 grms. Propimex-1, și 102 grms of Similac to a total volume of 30 oz. He receives 21 oz. by bolas feed during the day and the rest at night with the pump. His medications are Carnitine-6 mls 3 xs per day, sodium benzoate-4 grms per day, Flagil-1.6 mgs 2x per day, and Prilosec 3.5 mgs 2 x’s per day. Carson receives two hours per week of OT therapy and two hours a week of speech therapy. Carson has low muscle tone, but it is not severe. We see Dr. Abdenur every two months and we have all his Aminos and Carnitine and Amonia levels checked. We work with a wonderful dietician and we change his formula according to his body weight and his labs. We Love our Doctor and can’t imagine where we would be without his dedication and Love to Carson. We know that we are so lucky to have him.
We would love to communicate with anyone. Here is our e-mail.
Our E-Mail is [email protected] |