Brothers!!

Andrew and Nathan sporting their new haircuts :)

FINAL NICU Follow-Up Visit

It's hard to believe, but some things are starting to come to an end as Nathan is getting older. Today, we had our final visit for the NICU Follow-Up Program through St. John's Child Development Center. Nathan has had follow-up appointments every six months since leaving the NICU at 3 months old.

It's about a two-hour appointment starting with interviewing with a nurse all about Nathan's health & wellness, progress, milestones and what's new with Nathan. After that, Nathan is tested by a physical therapist and a developmental therapist. Nathan's has come a long way physically since our last visit in January and Jen & Barb were just thrilled with Nathan's progress!! After that is over we are moved to another room where we wait for Nathan's Neurologist to deliver us with the formal results.

It's very clear to everyone that Nathan is making progress and that is a good thing. However, Nathan scored at just a twelve month level. His neurologist stresses not to get hung up on this number because there is no right test to take everything into consideration, but it is still the hardest thing to hear that your child is so far behind. We discussed in detail Nathan's prognosis and I can't even remember all of the technical terms that were thrown at us to be honest. I can tell you that Nathan does have a form of Cerebral Palsy and of the three areas of the brain that could be affected in some way, Nathan unfortunately is three for three. Our little guy has been hit more than hard so early in life and now it's a never-ending long road ahead.

We are continuing ALL of Nathan's therapy and praying for more and more progress each and every day. Our schedule is nuts, but without all of the help and support from therapists, family and friends, Nathan would not be where he is today.

A Touching Dedication to Special Needs Children

It's hard to put into words what thoughts, feelings, concerns, fears, etc. - the list goes on, we have for our precious little Nathan. I came across this poem the other day and it's amazing how this author said it PERFECTLY.

Someone I Love by Lori Hickman

Someone I love relies on me in ways you will never understand.

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.

Someone I love is unable to advocate for themselves for things that most of us take for granted.

Someone I love will never have the opportunities that every child should have.

Someone I love will need unconditional love and support after I am gone - this frightens me to the core.

Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act and/or learn differently than others.

Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.

Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of this world.

Someone I love has needs that require more time and energy than I have to give.

Someone I love has needs that mean I am not able to meet basic needs of my own.

Someone I love has needs that have become the driving force behind major decisions my family makes.

Someone I love has changed me in ways I will never be able to describe.

Someone I love has taught me about love and about the really important things in life...

And still others don't understand what it is to be me, they aren't living in my skin.

Transition Meeting for Nathan

This evening we had a meeting with Nathan's team of therapists, his First Steps' Coordinator and representatives from the Parkway and Special School Districts. It was a very informative meeting about what will happen when Nathan turns three and exits the First Steps Program. This will happen in February and there is so much to do between now and then.

Steve and I were prepared with questions, but have even more now that we know a bit more about the process. One of our biggest concerns is Nathan's hearing loss and how that will be addressed in a "normal" school setting. We want to make sure we have exhausted all of our options and know he will be in the best preschool social setting possible with all of his challenges.

I plan on visiting the schools this Fall once they are in session to get a better feel of what will be the best fit for Nathan. I really hope this decision ends up being easier than what we are faced with now. We are overwhelmed with everything to consider!!

NO More Diapers...

...for Andrew, that is!! We definitely have been putting off this big event of getting Andrew potty trained for awhile now, but I kept thinking our schedule would ease up a bit and I would have more time to focus on it. Well, I finally realized that our therapists weren't going away, we still had appointments to keep and plans to make. Our schedule is actually getting a bit tighter which I didn't think was possible, so we just had to bite the bullet and make the best of it.

So, today we said good-bye to diapers and hello to underwear :) We are just taking it one step at a time and hoping for the best. Andrew is definitely ready now and very willing to sit on the potty and collect rewards for trying and obviously for going potty. He's excited for this next step of becoming a big boy and proud that he's no longer in diapers like his little brother :)

Up Steps!!

Nathan has mastered the basement steps :) He is motivated by the light up above and constantly has to stop and check it out. We have been working on the steps during physical therapy and he decided to take off today!! I didn't catch it with this video, but Nathan usually announces, "Up steps" as he's going up and "Down" when he decides to go down :) Time to get the gates back out!!

The Boys Meet Mary!!

We headed over to my brother's house today for the boys to finally meet Mary. They were a bit under the weather when Mary was born and we wanted to make sure we were germ-free. They LOVE their new girl cousin and wanted to help Uncle Todd and Aunt Laura with everything :) Mary Grace is just a sweetheart and handled the boys without a flinch!!


That's a good baby.


Andrew holding Mary like a big boy :)

Kisses for Mary.

Steve with his precious niece.

What a cutie pie :)

Nathan proud of his cousin!!

Chesterfield Amphitheater

After a long day in the heat, we figured we may as well head on back out to check out some live music at the new Chesterfield Amphitheater. It was perfect!! Griffin and the Gorgoyles was playing and we all had a blast. The weather cooled off and we even saw an amazing sunset while enjoying the music. There are a couple more concerts left in the series and we plan on enjoying them :)

Andrew clapping along with the beat of the music.


The boys!!

Nathan enjoying the music!!

Andrew having fun!!

Heitman Family Reunion

This afternoon we headed out to the farm for the annual Heitman Family Reunion. This is Steve's Mom's side of the family - Steve has 33 first cousins on this side!! We had a great turnout and it's amazing to see how much all of the kiddos have grown. It was a HOT day, but the boys did great!!


Andrew on the catapult swing.


Saying our prayer before meals.

Steve pushing Andrew and Henry along with another one of the cousins' little girl (I have a hard enough time keeping the cousins straight, let alone their kids!!)

Henry and Andrew on the teeter-totter.

Nathan smiling away :)

Fittings

This morning we headed to get BOTH boys fitted for orthotics after a check-up with their orthopedic surgeon on Monday. Nathan is growing out of his current orthotics and needs new ones with an added mechanism to allow us to stretch his Achilles tendon. Andrew also needs his Achilles tendon and heal cord stretched to help prevent his "toe walking." So, he is getting custom orthotics as well to help with this task.

Once we get these new orthotics, it's going to be a rough transition getting both of the boys to tolerate wearing them. It will be a rough few days and then hopefully it will just be another part of our every day routine :)

And then later this afternoon, Nathan was fitted for a therapeutic bike - yea!! We are praying that Variety Club gets the necessary funding in order to provide all of the kiddos this year with adaptive bikes that need them. It's a wonderful project that is supported by so many and provides endless benefits for children who otherwise could not move on their own. Project Mobility is where the bikes come from - check out this AWESOME organization - www.projectmobility.org

Mr. & Mrs. Eric Becker!!

Congratulations, Eric and Katie on your marriage!! What a beautiful ceremony and fun reception - thanks for including us in your special day. We wish you a lifetime full of love, laughter and happiness!!


The newlyweds :)


Myself with family friends, Jamie and Beckey.

Me and my Mom.

Welcome, Mary Grace Bruemer!!

This afternoon my brother and sister-in-law introduced their precious baby girl, Mary Grace!! She was born at 2:46pm weighing 6 lbs 10 oz and 18 1/2 inches long. She is absolutely perfect and we are so glad her arrival went as smoothly as possible. Congratulations, Todd & Laura!!

Sweet little angel.

The PROUD parents!!

Mary and Gigi having their first heart-to-heart - she is wide-eyed and taking it all in :)

Me with my precious niece.

Wide-eyed.

Gigi and PaPa with their long-awaited grand daughter!!

Happy Birthday, America!!

We had a great time this 4th of July weekend spending lots of time with our families, in the pool and enjoying delicious BBQ. We love having extended weekends to relax with the kiddos and to give little Nathan a much needed break from ALL of his therapy.

Nathan having fun with his Godmother, Aunt Erin!!


Posing with Pops' hat on - looks like it's a pretty good fit -ha!!

Some of the grand kids enjoying popsicles by the pool - Morgan, Will, Andrew, Kathryn and Matthew.