Pray for Aedyn

Aedyn had a good report at the University of Iowa.  His hip continues to improve.  It's still not quite where it needs to be but because of the progress, he is still able to avoid surgery and a cast at this point.  The doctor would like him to continue wearing his brace at night for 6-8 more months to see if this will help the hip to form correctly. 

We formed a Family Team for March of Dimes' March for Babies.  "Team Aedyn" was able to raise money in the fight for all babies to be born full-term and healthy.  It was a great experience!  Many friends and family members partnered with us by donating and/or  walking with us that day.  We designed "Team Aedyn" t-shirts and made a storyboard to be included in the walk's "Mission Mile".  It was a great day!  (See pics).

We continue to work through the LONG and COMPLICATED process trying to get Aedyn on one of the "waivers" that will help us be able to access more resources for him.  Pray that this will happen soon.

Getting his hips checked

Team Aedyn t-shirts

Aedyn and his Storyboard

March for Babies - the Littlest "Walkers" for Team Aedyn

Aedyn in his cute bibs

Riding his Caterpillar (with some help)

I Think I Might Like Coloring!

I Love my Puppy

Playing in his Bumbo

Working on Sitting

I Like my Tiger Xylophone

More Progress with Tummy Time

Aedyn had his eye appointment last week.  His eyes look good, even the possible issues with vision that sometimes occur with Emanuel Syndrome.  She is a little concerned that he might have a bit of a lazy eye issue with his left eye.  She wants to check that again in 3 months. 

His appointment with the ENT following the BAER test went well.  The doctor is pleased with how the right ear is looking since the tube was put in in the fall.   We learned some things about what options will be available for his left ear (with no canal).  When he is closer to 5 years old, he can have a CT scan to see what the bone structure looks like.  If the bone structure is good, Aedyn's ENT will refer him to his colleague to build a canal and eardrum.  When the bone structure is good, there is good success with this type of surgery.  If there is any sort of anamoly with the bone structure, it greatly reduces the success rate with creating a canal.  If this is the case, the better route is to pursue a BAHA (a type of hearing aid that works with bone conduction behind the ear). So, the results of the CT scan when he is older will let us know which is the route to pursue.

Aedyn had an appointment with the NICU Follow-Up Clinic this week.  It was great to see some of his nurses who helped take care of him.  The nurse practioner who meets with us and evaluates his progress always has helpful ideas for us - again another great resource we are blessed with.

Aedyn has been making progress with his physical therapy this week.  We have included a picture of him showing some of his improvements.  Previously he did not have the strength in his arms to prop himself up - he was working on staying propped if we got him in that position, but couldn't get there on his own.  Just this week, he's been able to prop himself up on his elbows by himself!  He's decided he really likes this as he can see so much more : ) 

Next week we go back to the University of Iowa to see how his hip is doing.  We appreciate prayers about this.

I'm so big!

Making progress! Yay!

Getting eyes dilated at eye dr.

Aedyn enjoyed Easter!  We enjoyed Easter this year too - it seemed more like his 1st Easter since last year he had only been out of the NICU for 7 days at Easter and we were still very overwhelmed trying to learn how to take care of him and deal with all his equipment.  It's amazing to see how far we've all come in a year!

This week has been a week of therapy.  We have such a great team working with Aedyn and are so blessed by them!

It's been a great week!!!

Last weekend we continued to celebrate Aedyn's 1st birthday with a little party. It was great to celebrate this important milestone with family and a few friends.      

We had a week full of appointments this week.  Here are some of the highlights:

1) Aedyn had his 12 month checkup. Although he has had bloodwork done many times, this was his first fingerstick. He did so great and just watched the nurse.  He now weighs 18 lbs. 13 oz.!  (His birth weight was 3 lbs. 13 oz.)  Some of his measurements are even in the 25th percentile!!!  We were used to the 3rd percentile or the 10th percentile for various things and just expected that he would hang out in these ranges and were fine with this being his "normal".  So this was a nice surprise!  The doctor said that growing is not his issue.  This is great! 

2) Aedyn got a GREAT report at his cardiologist appointment!  The valve continues to show improvement!  We were not even aware that this was an option and were praying that it stayed the same and didn't get worse.  What a great surprise that it is continuing to improve!  The ASD (hole in his heart) wasn't easily viewable this time due to some angles with the echocardiogram.  However, his doctor said this means it's possibly very small OR that it has closed on its own as there is no evidence of it causing any issues for him at this time!  Again, we didn't know that it was still a possibility for it to close on its own.  We thought the window for that to happen was already passed.  His heart is managing so well at this time with both issues that he doesn't have to go back to his cardiologist for a WHOLE year!!  We shed some tears of joy before leaving the office.  God's care and protection of our little Aedyn continues to overwhelm us!