I’ve been a little concerned about Josephine’s growth lately, so I scheduled a weight and length check for today.
According to Dr. Owens, Josephine is moving right along.
Josephine is 18 lbs, .5 ounces (hey, every 1/2 ounce counts!) and 32 inches long. Following her own curve nicely.
That’s a bit of weight off my shoulders, at least for now.
I need to start off this entry by saying how important it is to share this journey with everyone I know. You never know what can happen when you are comfortable and open enough to talk about Tetrasomy 8p and Agenesis of the Corpus Callosum (ACC).
I had the most amazing time with my family this past weekend. Yes, it was great seeing and spending time with family we don’t get to see often.
But the best part came after everyone left.
My cousin, Micah, and his wife, Jackie, are interpreters for the deaf. I don’t even know how we got on the subject, but we quickly started talking about verbal processing, auditory processing and visual processing and specifically how the brain plays a part in each.
We have been struggling with how to get Josephine to communicate because every time she seems to get something, she loses it when it’s not practiced for some time. I believe this is a result of the ACC. I shared my thoughts with Micah and he agreed.
Apparently, the part of the brain that processes the verbal aspect is in a different location from the part that processes the auditory and visual aspects. Because Josephine is missing that connection between the right and left brain, the verbal process takes much longer to communicate with the other two processes. However, the auditory area and the visual area are on the same side of the brain, which allows the communication to happen faster.
This is important to understand because it made me realize how vital sign language is to Josephine.
When Jackie was playing and signing with Josephine, Josephine’s face lit up and she was very attentive. When Jackie stopped signing and playing, Josephine looked her in the eye and signed “more”. No prompting. Josephine knew what to do and how to get what she wanted.
I have now submerged myself in sign language. I even have an app on my phone that I can turn to if I need a sign I can’t remember. And it has already come in handy.
Since we have started to use sign language regularly, I notice more peace in Josephine. Seriously. It’s like she’s soaking it all in and getting it. Getting it in pieces, but getting it.
We are also implementing pictures of familiar items. We are signing the word, showing the picture and saying the word verbally. Again, Josephine is starting to identify things more and more.
Sometimes it all gets a bit tedious. Sometimes I just want to sit and cry or sit and fume or sit and sit.
But I quickly realize it is worth all this work right now. To be able to give the world to my daughter. A little extra work for such a big reward is worth every tear I want to cry or every swear word I want to shout or every silent moment I want to steal.
Just looking at my little girl…I know it’s worth it.
If it were only as easy as giving Josephine TUMS to solve her reflux issue. Alas, she is now on an OTC med (Nizatidine, generic for Axid) to stop the writhing pain she goes through with her bouts of reflux.
The visit to Dr. Sunaryo (Pediatric Gastrointerologist) was uneventful, fortunately. Based on our description of Josephine’s symptoms, Dr. Sunaryo felt invasive testing would prove the same diagnosis, so why do tests to make Josephine more uncomfortable. No noise from the peanut gallery on our end.
Josephine’s reflux issue comes and goes and Dr. Sunaryo said that is normal. Some people get it all the time, while others are intermittent. We expect her to be on this medication for many months.
I have expected this result for some time now, especially after talking with the moms of the other Tet 8p kids. All 3 of them have reflux issues, although more severe.
So now, we are off onto another adventure in the world of special needs…I could use a vacation.
Last weight check was 3 weeks ago when I took Josephine in for an ear infection. She was 16 lbs, 14 oz, which was a loss of 1.5 ounces from her weight check at the beginning of April. But Josephine was sick and had a pretty bad infection, so I will just toss it to that.
Happy to report Josephine is back on track and is now 17 POUNDS even!
Every ounce is a celebration.
As an aside: I must take this time to say I just found out about a big loss at our pediatrician’s office. Becky Larsen, a fabulous medical assistant, passed on to Heaven on April 24, 2010, as a result of a blood clot to the heart. She was 36.
I feel the need to mention her on this blog because she was a true fan and supporter of Josephine in so many ways. She brought a smile to my daughter’s face, to mine and to every other patient and staff member that had a chance to know her. I know she will be cheering on “Josephine-A-Bean” from up above.
Rest in Peace, Lovely Rebecca. You will be missed more than you know.
We have a new Pediatric Ophthalmologist! Her name is Dr. Anita Breckenridge and I love her (www.kideyedoc.com)! We have seen her in the past for Little Sheldon’s eyes and were very happy at the time. However, Dr. B was no longer taking Oxford Insurance (and I can’t say I blame her), so we were forced to go elsewhere.
As you have read from my previous post, I was not happy with the level of service with Dr. Wagner’s staff.
The same day I received poor service from one doctor, I received the opposite from Dr. B’s staff! Not only did the receptionist say they DO give reminder calls, she booked Josephine for an appointment within 3 days.
Josephine and Dr. B met this morning and are now buddies!
The diagnosis is the same: Mild exotropia in the left eye. The treatment is to patch the eye for 2 hours daily for the next 3 months and Dr. B will see us again in August. Excellent optic nerve and no concerns for glasses at this point.
At least the patches are adhesive and look pretty cool, I must say.
And I know I will get a reminder call in August – from a doctor that takes time for her patients and goes out of her way to keep them.
Check out her practice at Pediatric Eye Associates, LLC., http://www.kideyedoc.com.
Let’s go back to mid-October 2009…whoosh, whoosh, whoosh…Are you with me? Good.
After many accolades about Dr. Caputo and Dr. Wagner (the Pediatric Ophthalmologist Gods of Essex County, apparently), Josephine was scheduled for an initial visit.
Dr. Wagner was wonderful, no doubt. But there wasn’t much to go on. Just initial observations that were to be followed up with in 6 months. Josephine had exotropia in both eyes (when the eye wanders outward, like a lazy eye). But because of her hypotonia, Dr. Wagner wanted to wait 6 months, after Josephine improved her muscle tone through natural development and EI therapy.
Now…let’s travel to early April 2010…whoosh, whoosh. Wait, I think we left someone behind…nope, they’re here…
Without going into detail, let’s say Mommy accidentally damaged her phone (hey, the coffee got in the way!), thus rendering the calendar and all contact information unavailable. I knew Josephine had a follow up with Dr. Wagner sometime in April, just not a clear date.
Now…a short trip to Tuesday, April 27…whoosh.
I called Dr. Wagner’s office at 8:30 AM to confirm if Josephine had an appointment THAT day and if so, the time. I left a message asking these questions, along with my cell phone number.
No return call.
It’s now 10:00 AM and no call from the office. I make another call.
“Yes, her appointment was at 9:30”, says the receptionist.
“Oh, sorry. I called at 8:30 this morning and left a message, but nobody called me back. Can I reschedule for next week?”
Slight laugh of irritation from the receptionist. “Uh, no. The next appointment is June 15 at 12:00 PM. Would you like that?”
“Why didn’t anyone call me back?”
“We have too many patients to call and remind them. Would you like to schedule that time?”
Really? No, really?
So, I took the appointment, with obvious hesitation for the lack of consideration from this lovely receptionist.
Needless to say, I am now searching for a different doctor. A doctor that actually cares about the patients and not about the numbers.
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.
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’!
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!!!!