bravo!!
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bravo!!
nadam se da bu sve ok. držite se
Jako se veselim zbog vas !pužić prvotno napisa
iii dr se predomislio, uzeo uzorke krvi za analizu i otpustio Iskru kući, uživamo
Odlično je to sto malena nema nikakvih problema sa organskim sustavima i doji , to je super .
Iskralijepo ste joj ime odabrali.
prekrasno ime!
pužić, odlične vijesti
Posljednje uređivanje od anamar : 18.07.2013. at 13:50
Iskra- predivno ime! Čestitam!
Čestitam na Iskri!
http://www.24sata.hr/zdravlje/isklju...sindrom-324313
tko zna..možda jednog dana..
puzic, cestitke!
super da je sa srcem sve u redu. i da dodam:
napreduje i znanost, ali napreduje i drustvo u socijalnom smislu.
nedavno je bio clanak o mladicu sa down sindromom koji je zavrsio fakultet.
hvala vam na čestitkama
Puzic , ljudi se boje nepoznatog (bas kao sto si rekla ).
Meni se isto događalo kad sam rodila E. neki su pitali da li mogu čestitati obzirom da je rođena sa teškom srcanom greskom i operirana kao novorodence ( prvi put od tri ).
Vi - roditelji će te biti ti koji će često morati pomagati drugima kako da vam pristupe, ljudi često ne znaju kako .
Pužić, čestitam na bebici, prelijepo ste joj ime dali!
Super da je beba doma s vama
Puzic, ja od kad sam cula ime pjevam: Mala Iskra pozar skriva......
jos ce ona paliti nasim forumom. Ja sam sretna jer znam da nije jednostavno ni dosla do vas.
Sto se tice dojenja, znas da nisam savjetnica, ali nije prva spavalica. No kad se razbude onda su male nacicanke.
pužić, prekrasan post si napisala
djeca s DS su stvarno posebna, divna djeca
što se tiče dojenja djece s DS, ono je malo specifično (ali itekako moguće) zbog njihove uspavanosti i niskog mišićnog tonusa pa bih ti ja preporučila da nazoveš SOS telefon
i stavljam par linkova da si pročitaš
http://www.roda.hr/article/readlink/1491
http://www.lalecheleague.org/faq/down.html
http://mobimotherhood.org/MM/article-down.aspx - na ovom linku imaš sve jako detaljno objašnjeno
Pužić
javljam da s ei dalje borimo sa sisanjem, dok ide samo ili uz kompresije ona papa čim treba potegnuti odmiče glavu, mlati nogama, rukama, negoduje i nema šanse da povuče ono masnije mlijeko..ne znam više što da radim, pijem piskavicu, čajeve, nudim joj obadvije u jednom podoju a činjenica je i da mlijeka nema baš..ne znam više kako bi ga navukla??bili smo na prvom pregledu kod ped, dobila je 250 gr za 19 dana što je kaže ped manje od porpisanog po n+knjigama ali u ovom trebu nije zabrinjavanjuće, bitno d aje vratila porođajnu težinu i na to još dobila.Što se mišićnog tonusa tiče ped kaže d auopće nije labava kako djeca s ds znaju biti, drži glavicu kad je na trbuhu, upinje nogicama, rukicama, stalno se odguruje, svi oni refleksi koji se provjeravaju na prvom pregledu su ok, tako d anam to daje još jednu nadu u bolje sutra.još uvijek se mučimo s razbuđivanjem i hranjenjem, to traje po dva i pol sata no imam osjećaj da ide na bolje što dani odmiču.toliko za sad
ništa onda kompresiraj, ja sam svojem najmanjem dosta dugo kompresirala, jer drugačije nije htio, a sisal je skoro do 3 godine.
nalazi krvi su ok, u granicama za ds, ne treba za zg. malo češće treba kontrolirati krvnu sliku da nas nešto ne zaskoči ali u principu je ok.do jeseni se nadam da smo završili s dr
Super.
I moram ti reci da se meni čini da vama sve odlično ide unatoč sitnim poteskocama sa dojenjem.
dugo je bila na neonatologiji , uspavana je , sitnija ,treba jos nabildati proizvodnju , ali unatoč tome ( i mogućim problemima zbog samog DS) ide vam jako dobro.
za dojenje je najbolje da zvrcneš SOS ili otvoriš topic poseban, pa će savjetnice reagirati.
odlično za nalaze!
<3
u kontaktu sma sa savjetnicom za dojenje iz os a i laumi pomaže preko pp-a, sve sam proučila, imam osjećaj od kad nam je tempo šetanja po dr slabiji i od kad više vremena doma provodima da je i mlijeka više, naravno i od kad sam mozak namjestila na pozitivnu vibraciju.bit će to okHvala vam na podršci
Baš mi je drago da vam se sve polako slaže, svaki dan će biti sve bolje i lakše.
Jel vam ds otkriven nakon rođenja ili već u trudnoći?
nakon rođenja
pužić čestitam i samo hrabro naprijed
a za imepredivno je, ja sam se kao mala tako htjela zvati, čak su me moji doma ponekad tako i zvali radi te moje velike želje
puzic kako ide?
ide..dan po dan. Mala maza, kad te gleda tim okicama ne možeš ju ne uzeti, samo ju mazimo.puno je budnija u odnosu na 1. mj, aktivna sve u 16., vježbe smo naučili, pa vježbamo, krećemo za 15 dana kod logopeda za ranu intervenciju i tak ide, nije strašno kako sam na početku mislila.Dobila je u malo manje od dva mj 1700 kg i narasla 5 cm tako da je dr jako zadovoljna. Sisanje joj je i dalje predjelo samo, možda se popravi kad krenemo s vježbama za usta.
a tebi i sefici
za super curicu!
Pužić, vježbe za orofacijalne mišiće su važne, ali jednako je važan i položaj bebe tijekom dojenja, kompresije i slično. Jesu li ti na vježbama pokazali kako pozicionirati dijete tijekom dojenja ?
nisu mi ništa pokazali , sama istražujem kad stignem, bila bi sretna da mi je netko pokazao ili bar uputio na neki filmić da vidim. Imam osjećaj da se mlijeko povlači, da ga ima još i manje iako je ona ojačala i sad bi mogla fino povuči samo da znam kako postići taj vakum jezikom (nekad uspije fino uhvatiti i vuče dok ide a večinom hvata i duda jer ne uspjeva jezikom stvoriti pritisak na bradavicu nego joj ona samo stoji u ustima i guta samo dok ja kompresiram ili curi samo..)kompresije radim od početka ali nemaju baš nekog efekta kad ona ne sudjeluje ili jako malo sudjeluje
http://noahsdad.com/how-to-deliver-d...down-syndrome/
kako roditeljima reci da beba ima DS
5 Ways To Properly Deliver A Down Syndrome Diagnosis
1. Say “Congratulations,” Not “I’m Sorry”
It doesn’t matter if the child is diagnosed with Down syndrome prenatally, or after birth (as in the case of our son,) congratulate the parents for the child they have conceived, or the child they just had. As I mentioned, my wife’s OB/GYN’s first words to us after our son was born was “I’m sorry.” Don’t say that.
This is the birth of a child, not a funeral. And the birth of a child always calls for congratulations.
2. Keep A Positive Demeanor
I know you’re nervous, you’re about to have an awkward conversation with some parents, and you have no idea how they’re going to respond to what you’re about to tell them, but please stay positive, after all you’re talking about someones child. You’re the professional and the parents are going to follow your lead.
If you look like it’s the end of the world, they may think it is also. But it’s not. It’s a beautiful new baby who is longing to meet his or her new parents. So please, please, please get over your fear and nervousness, put a smile on your face, and tell them that their new little one has a surprise for them, then help them understand what causes a child to be born with Down syndrome as some mothers think it’s their “fault” that their child has Down syndrome, and they perhaps did something to cause it.
3. Tell Them There’s Never Been A Better Time In The History Of The World For A Child To Be Born With Down Syndrome
There’s a good chance that you don’t personally know anyone who has Down syndrome, and an ever better chance that you aren’t up to date on the current information about what life is like for children with Down syndrome , but you should be. I’ve heard stories about OB/GYN’s telling parents that children with Down syndrome suffer, won’t ever be verbal, are sick all the time, and have all sorts of health problems. Sadly, most of these OB/GYN’s are telling their patients this information based off information that is decades old from when they were in medical school. What’s even more heartbreaking is that this inaccurate information causes many of their patients to make a fear based decision (aborting their child) that they regret the rest of their life.
I hope that you would never tell an already scared, worried and shocked parent this bogus information. The truth is, there really has never been a better time in the history of the world for a child to be born with Down syndrome and there are countless resources available to help reach their full potential. Today people with Down syndrome go to college, have careers, drive, get married , are public speakers, become actors and actresses, play (multiple) musical instruments, live independently, and live meaningful and productive lives.
In fact, American Journal of Medical Genetics recently published a study that showed that parents of a child with Down syndrome have a more positive outlook on life because of their child with Down syndrome. In other words they are happy, not sad and depressed, because of their child with Down syndrome! I recently told a reporter from Headline News that there’s no reason to be sorry for us, or for Noah…and I meant it!
It’s important that you paint an accurate picture of what their new child’s life could possibly be like, and an accurate picture is a hopeful one. When you took the (kršitelj koda)ocratic Oath you swore that you would use your power (and influence) wisely, so be sure you don’t unwisely and irresponsibly use your power and influence to scare someone into making a decision to end the life of their baby; especially if the information you are giving them to base that choice on isn’t accurate. Give them hope, not fear.
The blood of that little baby is on your hands if you try to tip the scales towards fear and worry and in turn cause them to “terminate their pregnancy.” Remember, you are to use your power wisely, and serve the highest interests of your patients, and that little baby in the womb is indeed your patient. Be sure you take good care of him or her, that little baby’s life depends on you.
4. Let Them Know You’d Be Happy To Connect Them With Another Family Raising A Child With Down Syndrome Who Can Answer Their Questions And Give Them A Window Into What Life Is Like Rising A Child With Down Syndrome.
When you tell a parent that their little child has a chromosome abnormality they are going to be scared. They will more than likely cry. That’s ok, it’s a normal thing to do. They are mourning the loss of the imaginary child they made up in their mind, the child that didn’t have Down syndrome. As they morn the loss of that imaginary child, they will also begin to construct a new child, a child with Down syndrome.
Those parents will probably be like me, and not know much about Down syndrome, therefore they will begin to imagine their new child based on their inaccurate information about Down syndrome, and this will cause them a lot of unwarranted fear. People are scared of the unknown, and Down syndrome will likely be an unknown for a lot of your patients receiving a Down syndrome diagnosis.
It’s your job to help make some of the unknown, known, and by doing so hopefully remove some of their fear so they can walk forward in hope.
One of the best ways to help them learn about Down syndrome isn’t by giving them an outdated pamphlet, and telling them to go home and “think about it.” It’s by introducing them to another family who has a child with Down syndrome, and allowing them to see first hand what it’s like raising a child with Down syndrome.
My wife and I are currently expecting another child, and are using a different OB/GYN this time who actually asked us if she could pass our contact information along to one of her other patients who is expecting a child with Down syndrome, to which we quickly and excitingly responded, Yes!
I would encourage you to do the same. We have a Facebook page where lots of families share pictures and stories of their children with Down syndrome, and we also have a website where we share 60 second videos of our son Noah just living life and doing things that typical kids do.
If you don’t know a parent locally that has a child with Down syndrome I would encourage you to reach out to your local Down Syndrome support group and they would be thrilled to give you a parent contact. In addition, you can email me and I’ll happily provide you with my information that you can give out to any of your patients. My wife (who is a pediatrician and the mother of a child with Down syndrome) and I would love to talk to any of your patients anytime about what it’s like rising a child with Down syndrome, and I mean that.
As a OB/GYN your knowledge about Down syndrome only goes so far, and the way you present the diagnosis to parents will largely be swayed by your opinions, experiences and stereotypes of people with Down syndrome, and not real life facts about Down syndrome. It’s ok to be honest about that with your patients.
You’re a Doctor, not God, and you aren’t expected to know everything about everything, so please take that pressure and burden off of yourself.
The best thing is to tell new and expecting parents that you don’t personally have a child with Down syndrome (assuming you don’t) but that you would like to connect them a parent who does, and that it would help them to see that it’s not as scary as they may think it is.
I think connecting an expecting parent of child with Down syndrome to a parent with a child with Down syndrome is the most responsible, helpful and honest thing you can do to help a parent who has just received a Down syndrome diagnosis. In fact, I’m convinced that if every women who received a Down syndrome diagnosis could hang out with our son Noah for just thirty minutes the abortion rate for children with Down syndrome would be almost zero.
5. Don’t Suggest That The Parents “Terminate The Pregnancy” Because The Child Has Down Syndrome
I can’t tell you how many times I’ve been told by another parent of a child with Down syndrome that their Doctor continually suggested (to the point that they felt pressured) that they “terminate their pregnancy.” This suggestion goes against the (kršitelj koda)ocratic Oath which you swore to abide to. It ‘s not a wise use of your power and influence, and does not serve the highest interest of your patients; either the baby in the womb who is your patient and whom you are suggesting to their parents that they murder (abort / terminate) him or her, or the mother who is also your patient whom you are suggesting murder their child and live with the guilt and regret of their choice for the rest of their life.
As I’ve already mentioned, as a Doctor you have a tremendous amount of influence with your patients, and they are looking to you with trust for guidance, hope, and encouragement. Regardless of what your views are on abortion, and rather or not you are “pro-life” or “pro-choice,‘ (I’m fully, 100%, always for life by the way) I’m sure we can agree on the fact that selectively aborting a child based solely on the fact that they have three copies of their 21st chromosome as opposed to two is wrong. In fact, some states have even made it illegal to abort a child due to a genetic abnormality.
So please don’t plant the seed of abortion in your patients mind simply because there’s a chance their child is going to be born with Down syndrome. Instead, plant seeds of hope, encouragement…and life.
Abortions never solve any problem, rather they create a multitude of many more.
e da je ovo proslijediti osoblju u bolnicama...na žalost ona prva vijest koja te šokira i ostane ti cijeli život u sjećanju dolazi upravo od njih koji nemau ni malo senzibiliteta za roditelje (majku rodilju koju pucaju hormoni)u tom periodu.
pužićka,hoćeš da ti nazovem osječku savjetnicu za dojenje,ili jednostavno dođi k meni kući
pužić i ja mislim da bi trebalo educirati osoblje u bolnicama. ponosna sam teta nećaka s ds i znam kako su to ružno prenjeli njegovoj mami i ponašali se kao da je on u najmanju ruku čudovište...ali mame su ZAKON i mame brzo sve zaborave uz svoja mala sunašca...
puse ljepotici
prošli smo prvih 6 mjeseci i mogu vam reći onaj strah, nevjerica, tuga, upitnici, suze i panika su iza nas.Našom kućom sada vlada neka neobična, do sad ne doživljena radost..ne mogu vam to opisati, to stvorenje je jednostavno uvijek veselo, nasmijano i kad se dogodi dan da potonem uzmem ju u naručje, njen osmijeh, ona privrženost i veselje poništi sve negativno.znam da će biti još puno puno teških dana i situacija, još puno puta će upitnici biti iznad naših glava, no ono što sam zapravo htjela napisati za sve one koji su u dilemi jer će možda u trudnoći vagati da li ili ne roditi dijete s Downom, ili one koji su rodili pa se ne usude pitati-pisati da to nije tako "strašno" kako se na prvu čini.
Posljednje uređivanje od sirius : 09.01.2014. at 17:44
Pužić, prekrasno si to napisala.
Ne zovu ih uzalud djeca suncokreti
Ljubi Iskru i uživajte u njoj!
Pozdrav!
Ja sam trenutno studentica defektologije i za seminar iz kolegija Psihologija djece s teškoćama u razvoju dobila sam temu : Uloga vršnjaka u djece s Down sindromom. Bila sam i asistentica curici s Downom.Jedno predivno iskustvo... Hvala Bogu, ona je sada u srednjoj školi i lijepo napreduje.
Zamislila sam na kraju seminara napisati iskustva i mišljenje roditelja koji imaju dijete s Downom - Opisati pozitivno iskustvo koje su iskusili sa vršnjaioma svog djeteta?Kako vršnjaci pomažu Vašem djetetu?Zašto mislite da je važno da Vaše dijete pohađa redovnu školu sa svojim vršnjacima?
Eto, par rečenica ..možda Vama neće biti problem, a meni ćete puno pomoći!!
Puno hvala, unaprijed!
veliki pozdrav Iskri...
hvala na pozdravima, Iskra naučila pa svima puse šalje
Iskra
Iskra
Povodom međunarodnog dana sindroma Down evo jedna prigodna
https://www.youtube.com/watch?v=aCJQAm_uKyg
i sretan vam međunarodni dan sreće
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