Beyond Expectations

Disclaimer - this is long!

Today has been a day of amazing!  I'm going to start by saying Brian is the best husband ever (no he didn't tell me to write that)!  I knew going into today's appointment that it was going to be big, never did I expect it to be this BIG!  I was unable to go due to school and Brian took on the daunting task of attending, discussing and reporting Austin's progress.  Those of you who know me very well, know that for me to give up responsibility is very difficult.  Up to this point Brian and I had both attended Austin's GI appointments.  Although I was 100% confident everything would go swimmingly, I still wanted to be there....but, it just wasn't possible today.  And...it was okay.

So, reverse to last week for a minute.  I took Austin to his audiology appointment.  After three tests, I was told he failed two of them and the 3rd one he was just too young for and had inconclusive results.  I was told to come back in 8 weeks to have him retested because the failed tests could be one of three things: 1. Austin has a middle ear abnormality, 2. He has some fluid on his ears due to a cold/congestion, or 3. His ears are still too small for the equipment to give an accurate reading.  So, we are scheduled to go back in June to have him retested and see an ENT for a cause if he should fail again.  We are not getting too excited about these results.  It's very common for children with Down Syndrome to have failed hearing tests due to small passages and frequent fluid in the middle ear.  Tubes are also a quick fix if needed!

Then on Friday, Brian took Austin to his follow up with Dr. Kreykes (surgeon).  This appointment was rather uneventful.  He confirmed that Austin is doing fabulous in his recovery from his reanastomosis.  He also reached out to Dr. Kevan to discuss "next steps".  Which brings us back to today!

I will continue by prefacing that Austin has and we believe he will continue to surpass all goals his providers have discussed with us!  The changes implemented today are many and in almost all areas of Austin's cares.  So, here is what we know:

• First goal is to get Austin completely of his IV nutrition (Dr. Kevan estimated this could be by Christmas - what a gift that would be)!  Second goal is to be able to discontinue the use of the g-tube. This is a little further out, but still way sooner than we ever expected!  The taper will start this weekend.  Austin's lipids will be discontinued within the next week.  In additiona, his TPN (vitamins/minerals/calories) will be reduced to 16 hours/day (currently at 18 hours/day).  Austin's dietician will calculate the rest of the taper to 12 hours/day over the next few weeks.
• His enteral feeding rate/volume will continue to increase 1ml once or twice/week.  He's currently at 24ml/hr. In addition, next week, Austin will begin getting 10ml bottles 6x/day (currently at 6ml bottles 6x/day).  After we are insured he is tolerating the increase, we will go to 15ml bottles 5-6x/day.
• Lastly, Austin's iron has been low due to his inability to begin oatmeal and/or cereal when typical babies would, therefore, tonight we started replacement iron 2x/day.  This can be a little hard on the stomach, so Dr. Kevan wanted us to space out some of the changes to allow his little body a chance to adjust to each of them.

Austin turned 8 months on Sunday!  He is currently 7.6kg (about 16lbs, 11oz).  On the Down Syndrome Growth Chart, he's just under the 50th percentile.  To put it in perspective, prior to surgery, he was between the 10th and 25th percentiles.  He's a very happy boy!  He's chewing on anything he can get in his mouth and regularly rolling from back to tummy....and then gets stuck....and then gets mad!

We had a very blessed Easter Sunday in St. Louis Park with Brian's family!  The Easter bunny was very good to the boys and Max got a Stryder bicycle and a helmet!  Love, love, love!  Max and Gavin enjoyed dying eggs and later finding them!  Here's a few pictures from the beautiful day!

Our prayers are being answered time and time again!  We can't put into words our appreciation and love for all of you!

Love and Hugs,
Tara and Brian
Max and Austin