wolfhirschhorn.org

I have been reading some of the posts and wanted to introduce my daughter Kayleen.  She will be six years old in April.   She has not made the progress that many of your children have but your stories give me hope.  Kayleen cannot sit up, walk or talk and has no verbal language.  She is developmetally only 3 – 6 mos.  Kayleen is adopted so I don’t know about the pregnacy.  We got her at 7 weeks and she was very tiny, like most WHS.  She remained  very tiny but did gain weight slowly.  She was eating and taking a bottle with no problems, she almost appeared to be a normal baby.  Six days after her 1st birthday she had her 1st seizure.  She had to be intubated and in the picu.  This was the first time a doctor asked if she had a DNR.  Very scarey!  A week after we got out of the hospital, we were back in due to an allergic reaction to the seizure medication.  At that time the doctors discovered she had silent asperations.  (They were amazed she had not had pneumonia before.)  She had a tubal ligation and a g-tube.  I had hoped she would some day be able to eat at least a little food by mouth but she has a very slow swallow and the therapist does not think it is safe for her to take anything by mouth.  She did start gaining weight like a normal child but is now 45 lbs. and it is a battle to keep her calories enough to support her brain and not cause her to gain too much weight.  Her seizures were very difficult to control (typical) and she was hospitalized frequently.  She had a Steven Johnson reaction to one of the medications.   This was very life threating and since we go to a  teaching hospital, lots and lots of doctors came in to see her.   She has been on many different types of seizure meds but continued to have multiple seizures a day.  Due to the frequency and severity of the seizures, she did not advance in physical or occupational therapy very well.  She got a VNS (vegas nerve stimulator) almost two years ago.  It took several months but her seizures finally got more managable and she started school.  When the school district took over from regional center, she received no therapy and lost what few abilities she had.   She did not progress much during preschool but I got her back in therapy, at least for a few months and she started doing better.  She gets therapy through CCS but they are recommending just having me work with her at home as her progress has been so slow.  Not getting therapy is so frustrating.  Sometimes I feel everyone is giving up on her.  She had a period of good health and did not end up in the hospital  for almost 11 months.  Last time she was hospitalized, I had taken her to the pediatrician and then a few days later to urgent care.  They could find nothing wrong but I knew she wasn’t right .  We ended up in ER with breathing problems.  She was septic and they never found a cause. She was in picu for 5 days on a bipap machine to help her breathe.  After being moved to the floor, she seemed to be having seizures.  Everyone that saw them was convinced they were seizures, including the nurses and 2 neurologists.  They did a 3 day VTM and the test did not indicate seizure, although she has an abnormal MRI.  She starts crying out of the blue.  She seems to be in pain and these episodes can last 30 minutes or more.  The doctors could find no cause but her MRI showed some effusion in the mastoid air cells.   She was back in the hospital within 10 days,   again with breathing difficulties , they think caused by RSV. Back to the picu and the bipap machine.  Kayleen has cortical blindness but can see something some times.  She likes sponge bob squarepants and will turn her head to the  TV when she hears the show.  She has also suffered a hearing loss.  As soon as she is healthy again I will get her hearing retested.  She laughs but it is so rare to hear it that  I wish I could capture it in a bottle and keep it forever.  It’s is precious and so infrequent, angel laughing!  As all WHS children, she is adorable, very pretty with a ton of unruly  curly hair.  I don’t know how to send pictures yet but will try to learn so I can send her picture.  She has been back at school for 2 weeks now but the crying episodes have continued, some days or nights worse then others.   I sort of rambled on but I wanted you to get to know her a little.  I’m looking forward to reading about all your children and following their progress.