Speech therapy has made a huge leap! Josephine said “B” multiple times during therapy on Monday. She had to be prompted, but the sound was there. We even heard a slight “mmm” sound. This is after about 2 weeks of pushing to produce bi-labial sounds.
Carrie, the speech therapist, considers Josephine to be at an 8-10 month level (Josephine is now 17 months old). She is very happy with Josephine’s inflection and chatty qualities. Gee, guess who she got the chattiness from????
OK…So this is my time to get out some aggravation. I will try to be reasonable and censored, but knowing me, that will fade quickly.
Two experiences this week have made me wonder who watches out for our children with special needs. It’s completely up to the parents/caregivers to fight the bureaucracy that creeps around in our society:
DIVISION of DEVELOPMENTAL DISABILITIES
Sounds like a nice name wrapped in a pretty bow that will help all those affected with a developmental disorder? Wrong. I have to preface this rant by saying we have just completed the application for Josephine to register for the DDD and this may all be for nothing, but it’s what I am feeling at the moment and need to get it out.
A rep from ARC of Essex County helped me complete Josephine’s application and I am super grateful for that. She is a great woman and is very knowledgeable with how to cut through the red tape. Before we even got started, I showed all the cases about Tetrasomy 8p and was certain this would solidify the acceptance. Quite the contrary! According to the ARC rep, the lower the IQ, the greater the chance of acceptance. Most of the cases show an IQ range of 60-78, too high to help Josephine’s case, even though her IQ has not been tested. The ARC rep had to remove 3/4 of the articles and only focus on the most severe. The DDD doesn’t like to see children with an IQ over 70. And since Josephine is only 1 of 20, it could be likely she would be denied because she is not delayed enough. And there is no proof that the disorder is a life long situation. WHAT????? Her chromosomes are not going to change! Her therapy will help her catch up, but she will always need some assistance with daily activities. ARE THEY KIDDING ME?
Having said this, if she is accepted, Josephine will have a great deal of benefits coming her way, including respite care and after school programs, as well as summer camp opportunities, all free of charge.
So, all we have to do now is wait 3 months – 1.5 years to find out the answer. Stay tuned!
OXFORD HEALTH INSURANCE
After much discussion with Sheldon and our PT, Lana, it was decided Josephine needs a assisted mobility device in lieu of a mainstream stroller, given her hypotonia and poor muscle strength.
We met with the rep from AllCare Medical and he measured Josephine to fit her for an adaptive stroller that will grow with her and give her the support she needs whenever we are in a public place. It can also be used as her high chair in restaurants, as the mainstream high chairs are not safe for her and do not give the support she needs. Lana wrote a wonderful letter of medical necessity, explaining Josephine’s needs, and it was signed by our pediatrician as well. We also included her genetic test results and any other information supporting the need. It seemed like a sure thing.
Yes, it was a sure thing. A sure thing we would be denied! Why, you ask? Because according to the all-knowing “powers” at Oxford, Josephine is just fine using the typical stroller and high chair and does not need the added support. REALLY!!!!???!!! I’m sorry…have these “powers” met our daughter? Have these “powers” seen her in a typical stroller, to see how uncomfortable she is and how unsupported she is? Have these “powers” seen Josephine hit her head numerous times on the back of the typical high chair because she throws her head back without warning? REALLY?
Well, I assure you that Oxford has made the wrong Mommy angry. We are already in the midst of an appeal and will inundate Oxford with more information than they can handle. This is completely unacceptable, to say the least. Denying a child the right to enjoy an outing with her family, all to save a buck…Thanks Oxford. Glad to see my monthly premium is being used in the best way possible!
Ready for Round 2!
After talking with the nutritionist (on Friday, January 15), I took her suggestion of adding a bedtime snack in addition to the couple ounces of formula and…are you ready? Josephine slept straight through the night two nights in a row!
Don’t worry though. Josephine was back to her “normal routine” the next two days and was awake every 2 hours. But we think it’s a two year molar issue and are looking ahead.
Last night, Josephine did sleep through the night again. I suppose we will have more of those sleepless nights, followed by nights of blissful dreamland.
All part of this journey! For now, HURRAH for sleep!
I tried to upload this video on this blog, but the file is too large. So here is the next best thing. Apologies for the quality, but you will get the idea.
Early Intervention and the progress it brings…(click on the link below).
Okay, it’s getting close to midnight…there’s finally silence. Nope, spoke to soon…as soon as I wrote that sentence, I jinxed myself. The crying continues. I wish I understood what she needs. As Krysta wrote in her earlier post, is it the normal toddler-fighting-sleep-scream or something else. Is she on some type of sensory overload?
Not really adding anything new…just my two cents. Just wish I could understand her more to help her.
The saga continues…
It seems that Josephine likes to keep Mommy and Daddy awake throughout the night…keeping us on our toes, I suppose.
But seriously, the trials and tribulations of getting this girl to sleep – outrageous. If we would let her, Josephine would cry for 2 hours straight while in her crib, rather than fall asleep, like most children her age. Then again, what is “Normal for Josephine”…
We are having some issues with middle of the night feedings over the past two weeks. Mitch Bentler (Nutritionist Extraordinaire) said she was doing great, as long as she didn’t wake up to eat in the middle of night. OKAY…so now what? I am calling Mitch on Monday to find out the next step. Do we need to increase formula intake before bed? Increase caloric intake whenever we can?
I have read that other Tetrasomy 8p kids have difficulty sleeping, even to the point that one of them must be sedated for 5 hours at night in order to get a decent rest.
So, is this another symptom or just a kid fighting sleep?
On to the next bit of research…
As of January 5, 2010 (HAPPY NEW YEAR), Josephine gained 3 ounces since December 4 – she ZOOMED up to 15 lbs, 11 oz. and is 29 3/4 inches long.
Hey, a gain is a gain is a gain! As long as there is a gain, we are thrilled!
Here’s a list of some of Josephine’s most recent milestones as of 16 months old. Developmentally, Josephine is at a 6-8 month level:
1. Mimicking pounding hands on table
2. Mimicking clapping hands
3. Reaching for Daddy to hold her while in someone else’s arms
4. Requesting more facial massage by touching own face, then touching therapist’s hand
5. Rolling over to tummy and choosing to play for a few minutes without prompting
6. Bearing weight on legs with assistance for small periods of time, about 5 minutes
7. Sitting unsupported for up to 30 minutes
8. Self-feeding finger foods such as Gerber Puffs, Cheerios, pasta, carrots and meats
9. Beginning stages of stacking blocks by two
10. Use of protective reflexes when falling over (still working on reflexes when falling back)
I need to take a moment to give total accolades to our therapy team from Sunny Days Early Intervention Services (www.sunnydays.com). Not only are they wonderful with Josephine, they are patient, kind, respectful, knowledgeable, caring and full of spunk!
Kudos to:
Lauren Levine, Developmental Intervention
Lana Furman, Physical Therapist
Kim Pannucci, Occupational Therapist
Carrie Leshin, Speech Pathologist
It is because of all of these women that our beautiful miracle is excelling in all aspects of life!
THANK YOU! THANK YOU! THANK YOU!!!
OK. We are done with all the tests to determine how Josephine has been affected by Tetrasomy 8p.
As of December 30, 2009, here’s where we stand so far..