The Senek Family would like to announce the arrival of the Kimba Pediatric Tilt-In Base Stroller! Mommy, Daddy, Sheldon and Josephine are doing fine after the arrival of their dear friend on Friday, April 2 at 10:08 AM.
Josephine looks wonderful and it fits her perfectly. I am so excited to take her out on the town and show her off in comfort!
Thanks to Lana Furman (our FABULOUS P.T.) and John from Allcare Medical!
Slow and steady wins the race…that’s the quote, right?
I am happy to say, at 19 months, Josephine is now a whopping 16 lbs., 15.5 oz. A total of 4 ounces gained in 5 weeks.
No, it’s not what I had hoped for, but it’s a gain. And gains are good…gains are good.
During D.I. therapy today, Lauren commented on the 10 second delay Josephine has when asked to do a task or respond in some way. This part is not new. But it is something we, as parents and therapists, have lost sight of because Josephine’s progress is steady.
What we forget sometimes is all the information that is being stored in her little head; she needs more time to process.
Anyway, it was what happened AFTER therapy today that was interesting to note.
Josephine was sitting nicely on the floor, just hanging out. I noticed she was making little motions, as if mimicking a conversation.
Both Lauren and I realized that Josephine was replaying our session in her head and doing all the things we had asked of her the hour before. It was the coolest thing to watch. She was “practicing”. Touch head, clap hands, twinkle twinkle, Mama, etc… Josephine was very content going through the movements and then she was done. She looked up at me, so proud of her accomplishments.
And Mama beamed.
Check out our little fashionista.
It has happened…
I have officially entered Josephine into the casting pool for “differently-abled” child models. This is picture I used (her school picture from Stepping Stones):
Keep an eye out for news about Josephine and Toys “R” Us and keep those fingers crossed!
Major milestone!
The crib mattress has now been lowered down one notch because…
JOSEPHINE IS SITTING UP REGULARLY ON HER OWN!!!!!!!
While we don’t expect her to pull herself up to standing anytime in the next two weeks or so, you can never be too cautious.
Pardon me while I wipe away my tears of pride and joy!
Man…it’s rough to actually do this protocol as much as is recommended! I heard it was hard and I didn’t believe it, but it really does get past you if you aren’t paying attention.
But I have to say, this seems to be doing the trick with Josephine’s hypersensitivity issues. She is tolerating her baby lotion better and she was able to play with dry pasta during speech therapy today.
Maybe dees here therapists knows whats theys doin’!
Yummy red velvet cake with cream cheese icing, tea, chatting. Just what you’d expect during a family training meeting with all our therapists, right?!
Seriously, we have the most phenomenal therapists EVER!
Each therapist discussed their strategy and goals for Josephine. There was a lot of back and forth talk about incorporating all therapies during each session (i.e. mixing a bit of PT during speech and mixing a bit of DI with OT, etc..).
Everyone was on the same page and had one goal in mind: giving Josephine the best opportunity to grow to her full potential!
When pressed for specifics, the therapists offered a range for Josephine’s developmental age.
PT: 5-6 months OT: 7-13 months DI: 8-13 months ST: 8-12 months
Much clearer now, right?
The main point made extremely clear to Sheldon and I is “STOP WORRYING ABOUT DEVELOPMENTAL AGE”. Focus on Josephine’s progress and celebrate those moments as they come. Nothing more.
That I can do!
We seem to have discovered another “possible” symptom or characteristic for Josephine and “her” disorder (I use quotes because each kid with Tet 8p is their own patient, until we can get a sense of what is what for all the kids).
The OT and PT are thinking Josephine has a sensory defensiveness issue (http://en.wikipedia.org/wiki/Sensory_defensiveness), as well as a hyposensitivity to movement. These are both considered to be Sensory Processing Disorders.
Is this a result of Tetrasomy 8p? Could be or it could be it’s just Josephine. What we do know is while some typical kids have can have these issues, kids with special needs tend to have this more often.
Why is this presenting now? My thought is Josephine is getting older and becoming more familiar with touch, sound, taste and smell. She is “waking up” to the world a bit more.
Josephine has been having “gag reflex” moments in the past, but I always thought it was due to saliva or eating something that got caught in the throat. Now I look back and realize she may have been having sensory issues for some time now.
How did we figure this out?
We were at Stepping Stones for group therapy and the OT, Alexis, suggested putting Josephine in a tub with uncooked pasta (penne, rotini, elbows…yum!). I did so without any explanation to her and she freaked. We took Josephine out and while the Alexis was holding her, Josephine started to gag. Immediately, Alexis identified that the pasta was the reason for the gag reflex. Not a clue until now!
So, to make sure I felt comfortable with this new information, I mentioned it to Kim, our Early Intervention OT. Kim agreed. In past therapy sessions, Josephine has been unhappy with messy play such as with pudding and finger paints. She can’t stand holding a crayon and won’t touch a marker.
In fact, after discovering this potential issue, I observed more of the same reaction during lunch one day last week. I gave Josephine pieces of mixed fruit, which is a little slimy from the juice. She didn’t want it, so I added some Cheerios as an “incentive”. Instead of eating both, Josephine looked at the tray and started to gag again. Then she tried to separate the two foods and got very frustrated at the sight of the food. I took the food away and she was fine.
I mentioned these occurrences to Lana, our Early Intervention PT, and she was surprised to hear this. She wanted to test it herself. So, she put some bath foam on a table and showed it to Josephine. No reaction. She put one finger in the foam. Little reaction. Two fingers. More of a reaction. The whole hand = GAG REFLEX. Lana was convinced.
What happens now? Will Josephine have this for the rest of her life? Who knows.
Kim gave us a brush and explained that we now need to do a brushing protocol. Brush Josephine’s hands, feet, legs, arms and back every 2 hours and follow it up with joint compressions. This will help desensitize her body a bit. Follow this link for more information on brushing: http://www.developmentaldelay.net/page.cfm/135.
Maybe she will always be sensitive to these things. But we now know if there is a random meltdown, we can better understand the source and how to correct it to make Josephine more comfortable immediately and in the future.
Josephine amazed me today and brought tears to my eyes, cheeks, the floor, etc…
While Carrie (our speech therapist) was holding Josephine and saying goodbye after her session, Josephine looked me straight in the eye and said,
“BYE BYE”
It was the most beautiful sound. It still rings brilliantly in my ears!
If I wouldn’t have heard it for myself, I wouldn’t have believed it. And I have a witness.
To hear my little girl’s voice in such a way, words cannot begin to describe.
True beauty!
Josephine had her 18 month check up today – no shots required for this trip, so she was a happy camper!
She gained 6.5 ounces since her last check 1 month ago. Josephine’s stats are now 16 lbs, 11.5 ounces and 30 3/4 inches tall. Her head is still on the small side (17.5 inches around), but maintaining at the 10th percentile.
HAPPY 18 MONTHS, PRINCIPESSA!!!!