Uncle Nick

People always comment on Asher's "wild hair". Let's just say... it runs in the family. Here is Asher's uncle Nick holding him last week.

Our Michigan Visit and More

Life has finally settled down after a busy week. Asher spent almost a week in Michigan and met lots of new people. Asher is very excited that his aunt Dawn and uncle Nick will be having a baby girl in 4 weeks. Aunt Dawn held Asher and his new cousin kept kicking him.
Also, Ashy had a doctor appointment yesterday and weighed in at 8 pounds 12 ounces! He was finally big enough to get his first vaccination, which actually went pretty well. Asher is continuing to take a little bit out of the bottle everyday, although it seems the feeding tube will be sticking around for awhile because he has to get quite a bit stronger to do away with it completely. We will be starting speech therapy (to work on sucking/swallowing) in the middle of July.

Here are a few pictures from our time in Michigan.

* * *

Grandma!

Grandpa and Asher - best buds!


Great-Grandma Griffith holding the little guy

Asher's new cousin, Jaxton, and aunt Julie

Hanging out with new friends - Elijah and Joshua and Sarah (Asher was getting cranky at this point!)

Live from the mitten state

We survived our first long car ride with Asher -- four hours! He was a little cranky throughout the drive. We stopped once for a diaper change and some squirmy time out of his car seat but overall it was a good drive. We've had a great time relaxing with family and showing Asher off to lots of people. So far, Asher has met all of his great aunts and uncles and great grandma. He got to meet my cousin's newborn baby (just 6 days old). Asher was very excited to meet someone that he was actually bigger than! He has also met some of my friends and will meet a few more before our trip is over.

My brother and sister-in-law made it here today from their home in Kalamazoo. They are expecting their first baby in just four short weeks. Asher is very excited to meet his cousin (a little girl... yay for pink!).

Will will be headed back to Chicago tomorrow. His 2-week long paternity leave is coming to a close and he will return back to work on Monday. He will be going to Wisconsin Tues. night and coming home on Wednesday. Asher and I will stay here in Michigan until Tuesday and then we are headed back to the big city.

Oh! And one major change in our lives -- we are no longer blogging from our rusty old PC. Say hello to our new Mac! She's super cute (I just decided "it" is a "she"). Here is a family photo that we took on the new computer.

More Asher pics

It's been a while since the last post so I think the best way to recap the last couple of weeks is in pictures:

Showing off his cool t-shirt from auntie Liz...

Early morning on our FOUR year anniversary!

Keeping guard...

Giving Mom a hard time...

Bath time with Aunt Maggie...

Chilling out...

Four generations of Atkins...

Saying hi to Great-Grandpa...

Indecent exposure...

Surfs up...

Sleeping...

Making sure she's not forgotten...

Tummy Time

"Tummy time will get easier, buddy, I promise."

Friday

Thank you all so much for your encouragement and prayers! We have felt so uplifted in the past week since finding out the news about Asher's diagnosis. I continue to have both good days and bad days, but I am starting to see past the diagnosis and not let it limit or take away from Asher's amazing-ness and uniqueness.

Many of you have asked about the meeting with the genetic counselor on Wednesday. Honestly, I was dreading it and did not even want to go. I just didn't want to partake in another discussion where I would leave feeling hopeless. Thankfully, we had done just enough research on PWS that there were no surprises with what the doctor said. He was hopeful and said that everything is on a spectrum, and we are lucky to have found out so early because we can help Asher immediately. Already, we are teamed up with physical, occupational, and speech therapists that will meet with us once a week for an hour to help strenghen Asher. These are all through Illinois Early Intervention program, which is a statewide service that helps any child with developmental delays. It is free and actually comes to our home, which saves us a lot of travel time (which isn't easy with a 6-week old baby!).

We really are taking it one day at a time. It is easy to get caught up in obsessing about what the future may look like but I am trying to avoid that. I want to enjoy this precious time with our new baby and soak in every new development and success that I see him have. He loves laying on the floor under his little activity mat and staring at the mirror and toys on it. He seems to love having his feet kissed from Pearl (and she LOVES this too!). He loves to be held and played with. We took him to the park last weekend and he seemed so content just laying on the blanket, feeling the breeze and soaking in love and attention from all of our friends. THESE are the things I want to focus on, because these are the things that bring him joy right now. As our story unfolds and the nature of his diagosis becomes more clear, we will adapt our lives and techniques to meet him where he is. As cheesy at it sounds, we want him to be the best Asher Atkins he can be, no one else, and without expectations or limitations. Again and again it is made clear that he is a gift from GOD!

An old friend passed this verse onto me. Joshua 1:9 - "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." I am thankful for this verse, as I have felt both terrified and discouraged throughout this journey so far, and I am sure those feelings may never go away.

On another note -- we are excited that Grandma and Grandpa Atkins are coming into town for a few days. This will give Will and I a chance to spend some time together while Asher gets grandma/grandpa time. We are all headed to the White Sox/Tigers game later this week, and I have to confess... I will be rooting for the Tigers. We are even considering making a trip to Michigan in the next couple of weeks so Asher can meet some of his family there.

Thank you again for your support. Each of your emails/comments/phone calls/visits are what are helping me get through this so far.

hard days

I am writing with a mix of heavy heartedness and hopefulness. I think the past 5 weeks are finally starting to catch up with me, especially in light of the news we received Friday afternoon. I received a call from the geneticist at the hospital and she stated that the results of Asher's chromosomal tests were in. I could tell by her voice that it was not the news we were hoping to hear. She said that there is a deletion on Asher's 15th chromosome, which correlates with a syndrome called Prader-Willi syndrome, and a diagnosis had officially been made based on the results of the tests. I couldn't even speak and I literally felt like I was going to be sick. Doctor's had referenced this disorder as a possibility already and I knew enough about it to know that it wasn't good.

So here we are, 3 days after hearing this devastating news. I have a mix of emotions that seem to change at any given time. We are meeting with a genetic counselor on Wednesday to further discuss the diagnosis and what action we need to take at this time.

After spending about 10 minutes googling it (very scary), I learned a few things about Asher's diagnosis. The part of the brain that registers hunger does not work properly in people with this disorder. They suffer from extreme hunger that is really never satisfied, which often kicks in somewhere between 2 and 6 years of age. Because of this, these individuals often suffer from life-threatening weight problems. It's so scary for us to think about our little baby having these issues in years to come, and we feel so many emotions around the nature of the syndrome. Also, people with this diagnosis have lowered IQ's and require a great deal of special education and therapies.

We are asking for prayer for strength for Will and myself, and our families. We have quite a journey ahead of us and continue to ask ourselves, "how did this happen to us?". Of course, we must hold onto hope that Asher will be able to live a happy and productive life, and we know without a shadow of a doubt that God has purpose in this. We are also enlisting prayer on what our future will look like, especially in terms of my work. We know it is unlikely that Asher will be able to attend a typical daycare, which means I may stay home with him and put work on hold for awhile. This is a big decision and we need guidance and clarity from God.

The lyrics to a song by Ginny Owens keep going through my head and bringing me peace. They remind me of God's sovereignty and plan for his people. Here it is if you'd like to listen, and the lyrics are below.

If You Want Me To - Ginny Owens

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

Chorus:
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to


It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I go through the valley If You want me to