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Caroline Caroline turned 10 years old back in November of 2009. She walked at 4 years old but is still not running or jumping. She is severely globally delayed in all areas. She attends a special needs school. She currently uses speech and some signs but she prefers speech so her signs are slipping. She can say one full sentence and that is “How are you?” Most of her speech is just one word utterances such as apple, eat, drink, ride, school, etc. Click the link below to continue reading
Brian Brian was born in 1982, a full term baby with no obvious signs of differences at birth. He was developmentally slow with notably “floppy” muscles. He was slow to sit up, walked at about two and a half years, needed eye surgery because of eyes that drifted outward, had a large umbilical hernia, and as can be seen from his photo has many facial features associated with PKS. He was diagnosed at three and a half with PKS, Click the link below to continue reading
Brayden Brayden was diagnosed with PKS at 3 days old. He was born at 35 weeks and placed in NICU for 34 days. Fortunately, doctors saw something different about the way Brayden held his hands so they checked his DNA. Sure enough we were blessed there was an answer and that answer was PKS. Brayden didn’t show much of the symptoms of PKS then nor does he now. Brayden makes strides each day. He can sit, take steps with assistance, eat anything, Click the link below to continue reading
Billy Before I had Billy I would see other special need kids and feel so sorry for their parents. I felt sorry for them wondering how they coped. I was so ignorant to that world until I had my own special Angel. I then realised the only difference was the hopes and dreams you have for your child instead of hoping my child would be academic in school and have a successful career. I now hope that my child will sit up unaided or maybe one day walk or talk. Click the link below to continue reading
Ava Our darling we girl was born January this year one day past her due date. My wife's pregnancy had been uneventful with all scans showing normal and other than some swelling late in the pregnancy there had been no cause for alarm. Ava was born 22nd January 2010 around 4 am by emergency C section at Middlemore Hospital in Click the link below to continue reading
Lillie My pregnancy with Lillie was fairly uneventful, outside of some happenings at my 20 week ultrasound. At the ultrasound, they noted she had an echogenic focus and told us that was sometimes an indicator of down's. At that point, it was too late for an amnio, so we had a 2nd level ultrasound where they told us it was not down's and everything looked fine. Lillie was born at 39 weeks, Click the link below to continue reading
Brittany After a normal, full term pregnancy, the precious little girl we had hoped and prayed for was born on January 13, 1983, weighing in at a healthy 8 lbs. 7 oz. Brittany captured our hearts from the second she was placed in my arms. She had a cute little turned up nose, a pouty bottom lip, a little patch of dark hair on the very top of her head and, to our surprise, an extra little finger on her left hand. Click the link below to continue reading
Gabby's angel sent from God--we had no idea that anything was different with her during pregnancy., all tests were normal. Then came July 15, 2006.by arrived at 4:58am, 6lbs 1 oz, she looked great. All that was wrong was that she had really bad club feet, we thought that was her only problem. When Gabby was 6 hours old, they brought her to me to so I could feed her, then she turned blue and stopped breathing. To read more, click the link
Ela was born on February 7, 2007, 6 days overdue. Her Apgar score was 9/10/10. She was a perfectly normal, happy, healthy baby, she was breastfed for 16 months. It wasn't until 8 or 9 months, that I realised something wasn't OK with my baby girl. All the other children were standing on their feet and already trying to take their first steps, while Ela was unable to sit. The developmental pediatrician told us she was hypotonic. To continue reading, click the link
Fern Fern is 2 and a half (DOB 22 July 2008). She is a beautiful girl who we all love! My pregnancy with Fern was different from the start. At 8 weeks I had a scan as I had experienced bleeding and pain. All appeared ok, I was still pregnant. The 12 week scan was fine, and the blood test for a down's came back as low risk. As I got to my 20 week scan I had a nagging feeling that all may not be right. When we went in for the scan it transpired that Click the link to continue reading.
KAJ PRAVIJO NAŠE DRUŽINE
O PKS OTROKIH
Družina, na katero se lahko zanesemo skozi dobre in slabe, in ki bo vedno na voljo, da nas dvigne!
Biti sposoben deliti z ljudmi, ki jih »dobijo«. Lahko se nasloni na tiste, ki so imeli enake težave. Zelo dobro je vedeti, da na tej poti ne grem sam.
Lepo je biti slišan in razumljen. Vedeti, da so tu ljudje, ki ponujajo nasvete, dajejo odgovore ali potrebujejo samo neko moralno podporo, je neprecenljivo. Kako lepa družina!