Mulch!!

Today we spent the day spreading mulch and giving our landscaping some TLC.  Andrew was a HUGE help and stayed right along with us the whole day :)  Nathan had fun supervising and spending all day outside - his favorite place to be!!

Heading for another load.

Spreading the mulch.

Just like his Daddy :)

Another load!!

Dump.

Neuromuscular Clinic

This morning we headed to Wash U. for Andrew's check-up with his Neurologist.  Andrew was a champ of course and worked hard through all of the testing and timed activities.  Andrew's scores relatively stayed the same overall, but individual muscles fluctuated since last June.  Andrew's Neurologist was happy with the results, but suggested we start steroids to help Andrew's energy levels and to hopefully slow down the progression of Duchenne.

Prednisone was prescribed along with a regiment of other vitamins and supplements.  Before starting anything though, we need to teach Andrew how to swallow pills.  Prednisone is a very bitter drug that leaves a horrible taste in your mouth the minute it hits your tongue.  There is an oral option, but you have to take so much of it that it's just easiest to bite the bullet and get Andrew used to taking pills.  So here we go - this is going to be a fun challenge :)

We also had to get Andrew's calcium levels checked before starting steroids.  So after all of the hard work at the MD clinic, we were then sent to Children's for a blood draw.  It's ironic being at Children's with Andrew since we spent so much time there with Nathan as an infant.  We forget that Andrew has only been there once or twice, but are quickly reminded as he's pointing everything out to us that makes this hospital so special for children.  Steve and I didn't take any of that in with Nathan's experience as his stays were merely a life or death situation.  I have told many people that you don't ever really WANT to go to Children's Hospital, but if you HAVE to go, this is the place to be.

One last appointment to add to our list is for Andrew be evaluated by a Cardiologist.  An initial cardiology evaluation is important to keep track of Andrew's heart with Duchenne.  Your heart is a muscle and one muscle that is so so very important!! 

It was quite a long morning, but Andrew did fantastic and we have yet a new regiment to add to our schedule.  One blessed day at a time...

Walk, Run & Roll at Busch Stadium

Today Andrew, Steve and I headed to the Cardinals game early to walk on the field and help spread awareness for all people living with disabilities.  It was a fantastic experience and a great day spent with just Andrew :) 

Waiting patiently to walk on the field.

We are starting to move!!

Ground level :)

Touching the grass (and then got in trouble for it).

Stan the Man!!

Andrew and Daddy showing the number of feet in left field.

Hitching a ride - it was a long walk :)

Two peas in a pod!!

Meeting with Andrew's Team

This morning I headed up to Parkway Early Childhood Center to meet with Andrew's teachers and therapists.  It's hard to believe he is just about finished with preschool!!  We were able to discuss all of Andrew's progress and areas to help him in the classroom.  I want to pass along any suggestions to Andrew's Kindergarten teacher in the Fall that will help him be as successful as possible. 

Right now, we see Andrew fatiguing more quickly especially as the day goes on.  Kindergarten is full day and some of those days will start with therapy for Andrew even before school.  Anything to help keep the physical activity to a minimum is beneficial to Andrew.  Some "tricks" we have learned are - give the kiddos an option to sit in a chair rather than on the floor (less up and down movement), have Andrew be on an end so he doesn't have to climb over anyone (preventing a tripping hazard), keep cubbies/mailboxes at eye/mid-level to keep him from bending/squatting, put Andrew at the front or back of the line when walking up/down stairs (lets Andrew go at his own pace) and to let Andrew decide what is best for him :) 

Andrew is a very independent little guy and doesn't want help unless he asks for it.  He knows his limitations and if you watch him closely, you can see the shortcuts he takes to keep up or make things a bit easier.  We do not want Andrew singled out, but at the same time we want to make sure his needs are met - it's one fine line and hard balancing!! 

It was hard to say good-bye to Andrew's team at this meeting.  Some of his therapists had been working with Andrew since age 3 and have become close friends :)  We are so blessed to have so many wonderful people in our lives especially those working with our children day in and day out to help them succeed!!

Trinity Closing Program

I can't believe Andrew is finished with preschool and will be starting Kindergarten in the Fall!!  I don't know where the time has gone and Andrew is growing up so quickly!!  We are so proud of all of his accomplishments and can't wait for this next transition :)









Theme of this year's program - got to love all of those little hands :)

 

Andrew processing in :)

Singing and dancing away with their glow sticks.

Waiting for snack talking to Daddy :)

I think we may have a ladies' man on our hands!!

Andrew and his teacher, Mrs. Del Rio - got his diploma!!

Congratulatory hug from Daddy.

Andrew giving out gifts - Mrs. Del Rio, Teacher.

Mrs. Photenhauer, Teacher Assistant.

Another cute pic :)

Mrs. Jaycox, Teacher - Enrichment (Math and Science).



Cerebral Palsy Clinic at Ranken Jordan

This morning instead of going to school, Nathan and I headed to Ranken Jordan for his comprehensive follow-up with his Orthopedic Surgeon, PT, orthotist and other medical staff members.  Nathan has been doing well ever since his Botox injections last October and we are thrilled that so far, so good. 

Today, his evaluation went well and we are staying on the same path.  Nathan is in need of new orthotics since he's growing out of his current ones, but we are keeping him in static AFOs during the day and getting hinged orthotics to wear at night to continue to stretch his heel cords and hamstrings.  Between wearing his orthotics during the day, stretching during the night and keeping up with his Baclofen prescription, it seems that Nathan's muscle tone is under control. 

Nathan is gets around in his walker without any problem and we are loving his independence!!  We will continue to work on strengthening his core, leg muscles and focus on balance.  The sky's the limit and Nathan is always pushing forward!!

Happy Mother's Day!!

We would like to wish ALL of the Moms out there a very happy and blessed Mother's Day!!  A special shout out to Steve's and I's Moms who mean the world to us.  We cannot begin to put into words how much your unending support and constant help keeps us going and able to keep up with our daily chaos.  We would not be where we are today nor continue with meeting all of our family's needs without you!!  And a special thank you to Andrew and Nathan for giving me the title and role as their Mom :)  This may be the hardest job I've EVER had, but I wouldn't change it for the world!! 

Carnival at Christ, Prince of Peace

Andrew looks forward to CPOP's carnival every year :)  It's hard to pass up since we pass our Church numerous times a day and actually get to see them set up all of the rides and booths.  Andrew just loves it and Nathan can't get enough of all of the action!!

Andrew and Gigi starting with the swings.

All smiles :)

Off and ready for the next ride!!

Nathan and I shooting all of the aliens.

Andrew and Daddy.

Andrew and I on the Tornado - this kid has no fear!!

Now, on the Hurricane with Daddy.

 

At this point, Nathan was starting to conk out, so we headed home and left Daddy, Andrew, Gigi and PaPa to finish off all of our tickets :)

Airborne!!

Flying down the slide :)

Gigi testing out the Tornado.

Went all by himself this time :)

Plinko!!

Gone Fishin'

Had to take a snow cone break :)

Nathan's IEP Meeting

This afternoon Steve and I headed to Ladue Early Childhood Center to meet with Nathan's team of teachers, therapists and specialists to discuss Nathan's present level as well as plan for the next school year. 

Overall, Nathan is doing great in the hard of hearing program, but it is very structured and adult/teacher driven.  Over the past few months, Nathan has not been participating as expected.  The teachers feel as if they are stressing Nathan out and in response, he's just shutting down.  So they have started taking a more indirect approach with him and it seems to be working :)  He is making progress with all of his therapy and is working very hard from the minute he steps into the building.  Nathan has SO many goals on his IEP - really too many at this point.  He's such the little trooper and just continues to do everything asked of him.

So with all of this information, we are planning a bit of a different path for Nathan for next school year.  First, he will go full day rather than just a half day.  He will continue to be in a hard of hearing classroom taught by a teacher of the deaf in the morning and then move to a special ed classroom in the afternoon to give him more opportunity to interact with his peers.  We are thrilled for this move because he will benefit from the best of both worlds.  Nathan will continue with ALL of his other therapy as well - PT, OT, Speech, Auditory/Listening and Vision.  We actually are dropping Nutrition from his plan since Nathan seems to be eating most everything these days :)  We will still monitor his weight gain and are still focusing some OT time on self-feeding. 

We are anxious to see how Nathan does with going to school full day, but feel this will help spread out all of his therapy throughout the day and most importantly give him the chance to interact with his peers.  It will also be interesting to see how Nathan does with all of the new transitions and two different classrooms.  Guess we just have to wait and see how it all goes in August!!

Some Fun Pics

The boys are always up to something...if I only had a camera ready to go at a second's notice :)

Evidently, Nathan wasn't very interested in Sunday's homily...

Having fun with bubbles.

Reading to one of his favorite stuffed animals - his manatee :)

Singin' in the rain!!

Making sure to show all sides of his Lightning McQueen umbrella :)