Back To The Grind

Back To The Grind

We had great intentions to blog while in California but that didn't go so well.  And then the summer just seemed to slip through our fingers and here we are more than two months after our last blog.  So much for doing this on a weekly basis, hence the name change of our blog!  We just have too much going on!

Let's see if I can summarize our summer before Jack awakes from his nap...

At the end of June/beginning of July we spent nine days in California.  After four days of Disney, two days of Legoland, and three days at the beach house, we were ready to return to New York.  We had a terrific time but it wasn't really a restful vacation.  We packed as much as we could into our time away and I know we created memories for the kids that will last a lifetime.  Here are some photo highlights.

                               

 

We got lots of pictures with different Disney characters and princesses

Breakfast with Minnie and friends

Cars Land at Disney California Adventure Park

The Lazy River at Legoland Water Park

 

An after dinner stroll with Uncle Tim and Uncle Michael

This was a huge step for Ryan and a far cry from the hysterics of meeting Lola during our trip to California a few years ago.

Jack loved his first trip to the beach!

 

We waited until our trip to California to officially announce the big news that we are expecting our 4th child!  We wanted to surprise Phil's brother in person.  I'm due November 3rd.  Here is a picture of me at 30 weeks.

After our return from California we had a little over a week to finalize details for Jack's 1st birthday party.  We had 107 people in attendance!  It was quite the day including a water slide, lawn games, lots of food, and a baby gender reveal!

Anticipation leading up to opening the box of balloons.  Pink or blue???

It's a girl!!!

Ryan wasn't really sure what the pink balloons meant.  At first he thought Jack was now going to be a girl!

Jack on his first birthday!

And we continued to have a busy July and August with a week of camp, numerous visits up to nonna's and papa's house, a trip to Playland, a trip to Splashdown, numerous birthday celebrations, a bridal shower, a baby shower, a Renegades game, the Norwalk Aquarium, the 4H Fair, three Irish Dance competitions, a week of Irish Dance camp (for both Ryan and Julia), and preparations for back to school.

At camp

Ryan with his Godparents, Uncle T and Aunt Anne

Rockland Feis

Dancing on the dugout at the Renegades game

Performance with her dance school at the Putnam County 4H Fair

Fishing upstate

Fun in nonna's and papa's pool

Norwalk Aquarium

Performance at the end of Irish Dance camp.  Ryan was so serious as he concentrated on the steps.  It was so cute!

Catskill Mountain Feis

Sporting their new Brazil soccer shirts

Happy Birthday Papa!

East Durham Feis

Bow and arrow target practice

Loved driving the cars at Playland

I wonder what he's thinking...

Happy Birthday Grandma!

Happy 6th Birthday Julia!

But not all of the summer was fun and games and good times.  After experiencing weeks on end of numbness and soreness in my arms and legs, the neurologist sent me for an MRI.  I have several spots in my neck and back where disks are hitting my spinal cord and causing neurological issues.  I'm returning to work when the school year begins but I will be on limited activity.  It is difficult to lift my arms, stand for long periods of time, and walk up and down stairs.  I have numerous appointments coming up to work on a plan for treatment options.

In addition, we continue to struggle with Ryan.  He has many ups and downs and continues to display wild behavior, especially when not taking the Focalin.  He is unpredictable and can get very violent at times.  We were denied services through OPWDD through their 2nd step review and we felt extremely defeated receiving that news.  The cost of the psychiatrist he sees, simply to get the prescription for meds is ridiculous.  It is $350 a month and all he does is write the prescription.  We need to look into switching to someone in our plan.  With everything else going on we dropped the ball on taking Ryan to the psychologist each week, although I'm not sure what good that was doing either.  We worked in the beginning of the summer with a behavior analyst but it was difficult applying a lot of the techniques she trained us to do when we were constantly on the run and in different settings.  All of these setbacks built up and has made me feel like a failure where Ryan is concerned.  We dropped the ball on a lot of things this summer.  It's not that we don't see the value in these things, we are simply pushed to our breaking points.  We have so much going on and when you juggle too many balls at once, some are bound to fall.  But I'm confident we will pick those balls up and add them to the mix in due time.  School begins for the kids in a week and getting back to a schedule and routine will help.  Being home on maternity leave this fall and winter will give me more time to make the phone calls that I need to make and spend more time with Ryan getting him back on track.  Fingers crossed and prayers needed!

DC

Week 166 - School's Out for Summer!

Summer is here!  Ryan finished up with a second year of perfect attendance.  Julia had perfect attendance this year too!

We were lucky to have my cousin here for a few days this week.  The kids stayed with her when school was not in session and it was a nice change in pace for them on their half days of school rather than going to day care.  Their fourth quarter report cards were as expected and we are very proud of what the two of them accomplished this year.

We finally got a letter back from OPWDD in response to our application.  It took over two months for them to review our paperwork and we now need to submit additional paperwork.  Ryan was denied services at this stage and everything is being sent to the second review committee.  We had his new psychologist and psychiatrist write letters of support and added them with the additional paperwork and reports that they were looking for.  We were told this step will take approximately two months as well.  Geesh!  We didn't ask for a lot of services; out of everything they provide we simply asked for someone to help Ryan with his schoolwork a day during the week.

His psychologist said that he is familiar with the process and it is typical for them to deny during the first round, especially for younger kids who may grow out of a lot of the symptoms they currently portray.  In his support letter he explained his assessment of Ryan and wrote, "As a past liaison between OMH (Hudson River Psychiatric Center) and the previously-termed OMRDD (from about 2006-2008), I am familiar with the referral and acceptance process for OPWDD services.  I believe that Ryan meets the criteria for OPWDD services and I hope he will be given favorable consideration."    Hopefully we hear word by the end of the summer.

Jack turned 11 months old this week!

Last soccer game

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Father's Day dinner

Ryan and Amelia

Over the past two weeks we've been working with a Behavior Analyst through a company called Little Steps Great Success.  The analyst has interviewed us several times and comes to the house once a week to observe Ryan in order to create a Functional Behavior Assessment.  Things are going well so far and she has been able to collect data on Ryan. We were hesitant at first worried that she wouldn't be able to collect any data since Ryan tends to be on his best behavior around new people.  But during the first full session Ryan was very resistant to doing the tasks she asked of him and she was able to observe a part of the Ryan we see on a daily basis.

Ryan is still taking the Focalin twice a day.  His eating habits have changed drastically.  His appetite is about a quarter of what it used to be.  He rarely finishes a meal (even with smaller portions) never mind asking for seconds or thirds like he used to.  Sometimes he gives us a hard time about eating and skips a meal altogether.  This is common with this type of medicine.  I just hope he doesn't lose too much weight as he is already so thin and bony.

Julia performed a solo in a recital this weekend.  Ryan said the best part was when she came out dancing and the audiance said, "Awwww!"  Here's the link to the video- Julia's Solo

We're looking forward to sharing our next post with you from sunny California!

DC