Check out our Superstar in the CDO (Chromosome Disorder Outreach) slide show. Josephine shines at 1:34!
A Shining Star!
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Author Archives: Krysta Senek
Couldn’t Have Said It Better Myself…
Truer words were never spoken. I’ve seen this on several web sites for kids with special needs and it’s perfect!
“God doesn’t give children with disabilities to strong people;
He gives them to ordinary, everyday people,
then He helps the parents to grow stronger through the journey.
Raising a child with special needs doesn’t TAKE a special family;
it MAKES a special family.”
I thank God every day that I am the mom of Josephine Betty Joy. The mom of one amazing little gal!
Happy Mother’s Day…Here’s the Stomach Flu for Ya!
Just in case anyone was wondering, the stomach flu is not fun. Not fun for a kid, not fun for an adult and certainly not fun for a toddler with special needs.
**(Not to be read on a full tummy)**
Josephine was hit mid-day on Saturday with a nasty fever of 102.7, followed up by 5 hours of vomiting. 5x changing of Josephine’s clothes, 2x changing of Mama’s clothes, 1x changing of Daddy’s clothes, 1x cleaning of the front door, 1x cleaning of the bathroom (various surfaces)…OK…you get the point. There was no fun happening at the Senek house that day!
The main reason for this post is to share the importance of getting the special needs child to the ER when something like this occurs. We didn’t think Josephine was so bad at first, but after the 7th explosive episode in 4 hours, we knew we had to call in reinforcements.
Dr. Silverman (Pediatrician) strongly suggested heading to the ER, especially since she has the “failure to thrive”/weight issue and slightly compromised immune system (comes with the chromosome disorder territory). After the major loss of fluids (I’d say AT LEAST 8 oz or more), Josephine was very dehydrated and needed an IV to improve her levels.
St. Barnabas Medical Center’s Pediatric ER is wonderful. We were in very quickly (fortunately, this is only our 2nd visit in almost 3 years) and the doctor started her on fluids and anti-nausea medication immediately. The nurse also gave her a Tylenol suppository, which brought her fever down almost immediately. Blood work and a urinalysis ruled out any serious illness or infection and the doctor settled on a stomach bug.
Before the supplemental fluids, Josephine was super tired and almost limp like a rag doll. After the fluids, she was her perky and happy self…AND SUCH A JABBER BOX (check out the video at :35 – the punchline in her head must have been hilarious…)
Always listen to your heart…a parent ALWAYS KNOWS!
Weight Check at 32 Months
Look out world! Josephine is now a whopping 22 POUNDS!!!!! We are officially over the hump of 20 pounds. In fact, our little principessa is sooo big, she was able to STAND ON HER OWN on a big girl scale at the Neurologist’s office. Who’s the proudest Mama ever???
Happy Easter Indeed!
Josephine continues to improve her speech skills, so much so, that I can’t contain myself (or my high-pitched voice) in this video from decorating Easter eggs…
MEDEK, MEDEK… Everywhere MEDEK!
Amazement, fascination, joy. Just a few words to explain the progress you will see in this compilation of the latest “Chronicles of Azriel and Josephine”. I feel many sequels to come…
Session 12
Session 13 (note the QUIET…ah, yes, THE QUIET!!!)
Session 14
THE HAIRCUT!
Yes, the word any parent, whose child suffers from Trichotillomania, loves to hear…HAIRCUT. Not because Josephine’s hair needs to be trimmed up after pulling episode. Because Josephine hasn’t pulled any hair OUT in some time. Granted, we are keeping her hair short, so she can’t pull any out (she is still grabbing her hair when frustrated, but can’t get ahold of any). However, the idea that I CHOSE to take her to get a haircut makes all the difference in my heart.
Happy Days
This melts my heart every time I hear it…and then she mauls me!
A Breathe of Fresh Air
After being redirected by an amazing security guard through the bowels of Morristown Memorial Hospital in Morristown, NJ, we arrived at the office of Dr. Arthur Atlas, Pediatric Pulmonologist.
HI!
Good news is Josephine’s lungs are working well and present no issues at this time.
Mediocre news is Josephine’s left side of her rib cage is indeed bell-shaped, meaning the upper part of her rib cage is more narrow than the bottom (uh, kinda similar to a BELL). At this point, it’s more of a cosmetic issue than anything else. My thought is when she wants to correct the issue, we can DISCUSS it with her. But if it presents no danger to her, why change it?
Dr. Atlas (also an wonderfully gentle man) wants to see Josephine in a year to make sure everything in growing in proportion to each other.
This visit made me think it’s about time to see Dr. Dreamy, er, um, Dr. Donald Putman (Pediatric Cardiologist) again. The last time he saw Josephine was when she had just turned 1 year and he cleared her of any heart issues. But as I understand with chromosome disorders, things can change year to year and it’s important to stay on top things.
I tell ya…it never gets old seeing Dr. Putman!
No Bones About It
I would like to take this time to introduce to you, our newest doctor to enter Josephine’s world…(trumpets please): Dr. Mark Rieger, Pediatric Orthopedist, at The Orthopedic Center in Cedar Knolls, NJ.
I have read that scoliosis is a common characteristic of Tet 8p – about 1/2 of the kids, or 7 if you want numbers. And I’ve noticed since Josephine has been on her feet and moving more, she always leans one direction (don’t ask me which way since I can’t even tell MY OWN left and right at this point).
Besides, I was getting tired of the same old set of doctors and wanted to meet someone new…
Seriously, though…Dr. Rieger was very kind and had a great bedside manner with Josephine.
No scoliosis at this point. Straight spine. I am certainly relieved to hear that. But I also know that as she starts to walk more, her spine may change as well. I tell ya, this gal’s keepin’ me on my toes!
He prescribed braces for Josephine – called Bilateral Low Profile SMOs – to help her strengthen her standing and walking. Josephine had her fitting last week and we should be getting them in the next couple of weeks.
Dr. Rieger also noted a rib cage abnormality, which we knew about. What we didn’t know was if it was an extra rib, bowing rib, missing rib, etc…
It was suggested that Josephine has a bell-shaped unilateral rib cage (good luck finding ANY information on THAT one…scoured the Internet for something to see, but came up short) and should see a Pediatric Pulmonologist to determine if her lungs are affected by the deformity.
Hi Ho, Hi Ho, it’s off to Morristown Medical Center we go (well, went, since I am so far behind)…