Mayo up-date

We are so thankful to our supportive family and friends for being so encouraging to our sweet girl as we began our Mayo journey on Monday.  This was Ainsley as we were waiting to pick Ryan up from work Monday afternoon.  She took a tumble on the sidewalk on Sunday so she has a scratch on her chin.

The trip was 3.5 hours and it took us about 5 hours with stops.  Ainsley tried twizzlers for the first time.  Such a good travel snack--she was a big fan and a BIG fan of Nemo.  She had never seen it before and now loves Nemo and her favorite Dory! 

I drove us to MN--I love driving in the country--it reminds me of growing up in southern IL.

Wide open spaces!

We told Ains we could go swimming when we arrived, so we threw our suitcases in the room and headed to the pool!

Ainsley loved the pool!  We got to the pool at 8 pm and she played until 9:30 pm (her bedtime is normally at 8 pm)!!!

We had some friends who we met at Iowa a few years ago who now live in Rochester stop by and visit with us about Mayo.  Andrea & Greg are the cutest couple.  She works at Mayo and gave us great advice and some inside tips--the best advice she gave us was reassurance to trust my gut as a mom and to not mention..."I found this info on WebMD".  I had to laugh and tell her I thought about mentioning a recent episode of Teen Mom where they did a muscle biopsy--thanks Andrea for saving us from embarrassment!

More fun!  I love this picture because it reminds me of how much trust Ainsley puts in us as her parents.   

We were SO tired and thinking that after almost 2 hours in the pool Ainsley would be fast asleep.  At 10:30 pm when she was WIDE awake--Ryan ordered Papa Johns...so we had a pizza party which ended around midnight when we all were fast asleep!

The next morning we were up at 6 am and made our way to our early morning appointment at Mayo.  Ryan dropped us off at the door and he went to find parking. Ainsley and I tackled the elevator and had no problem--it was the fastest elevator!

Once we got to the pediatric floor it was magical--it was so calming and peaceful.  Lots of fun things for Ainsley to look at!  Our first appointment was with her pediatric doctor.  She took Ainsley's history and reassured us that we had done the right thing to look further into her CK levels and missing chromosome.  She recommended that we meet with an endocrinologist, genetic doctor and neurologist.  She said that her staff would do their best to get those appointments scheduled this week and then we would meet with her at the end of the week to wrap up.  After a few hours of that appointment and the staff making some calls we had a plan for the week.  The only appointment they couldn't fit in this week was neurology--that was scheduled for early July.  The nurse said we could be a "caller" which means you let the front line staff know you are in town and would like to be seen if an opening comes up.  As soon as I got Ainsley's schedule I went to the front desk and said, "I'd like to be a caller for Neurology".  In hindsight this was silly because the staff just called Neurology.  After a few minutes they said we needed to wait outside of the Neurology office.

A few minutes later a Neurology nurse came out and said we had a cancelation a few minutes ago, the doctor can see you at 10:45 am, right now!  She asked for Ainsley's birthdate and I responded in a crackled voice because I was SO happy (and may have teared up a bit).  That was totally God working things out for our sweet girl.  We met with the neurologist who was not the warm and fuzzy type (which is totally ok) because I liked the direct answers he had for us.  When I mentioned the CK level he said 400 and below was considered "acceptable".  We had never heard that before.  The ranges we had been told were 150 and below.  He also thought her tone was normal (on the low end of normal)--but we'll take it!  He said that she does have some delays-he thought overall she was at 75-80% and he didn't know what accounted for the delay, but we have all of the supports in place already to work on speech, gross motor, etc.  It was GREAT news.  We left that appointment and headed to lunch.

We were all so tired.  By the time that we got to the parking ramp, I told Ryan (several times), "I need a BIG diet coke"! 

I put Ainsley in her car seat and with all of the conviction in the world she said to me, "I need a BIG diet coke".  HA!  Apparently she is very attentive to what I say!  I let her have the last few sips of my diet coke at lunch.  

We planned to head back to the hotel for an hour before her next appointment with genetics.  Ainsley was  bouncing off of the walls and didn't want to nap..so we headed back to the hospital.

Ainsley may not have wanted to sleep, but she was hungry!  She ate most of her pizza at lunch!

Our afternoon appointment was with a genetics counselor and we were scheduled to see the doctor on Wednesday morning.  When we got to the 2:45 pm appointment, she counselor said the doctor can see you today!  We were thrilled.  This was the BEST appointment. The doctor took the time to explain the genetic deletion and was SO thorough with his work up of Ainsley.  He recommended that Ryan and I get tested for that portion of our DNA because if we are missing that portion of chromosome 4 and we are fine it is not a significant deletion.  If only Ainsley has this deletion then it is significant for her and her future kids to have this deletion and corresponding concerns.  Only .1% of people have this deletion so since it is very rare he recommended looking into it more.  He also recommend doing a biochemical blood test on Ainsley (which only required a blood draw) and this will let us know if Ainsley's body is processing energy well and other things that I can't remember.  He was the kindest doctor--he was an excellent teacher. He said he was sorry we didn't get this information sooner to help off set all of the worry we've been though.  I always like to write notes to Ainsley's doctors who have made a big impact on Ainsley/our family--he is getting a letter soon--we are so, so thankful we got to meet with him.  He also specializes in endro (thyroid) so he was able to answer all of our thyroid questions.   

Off to the lab--he also checked her CK level and thyroid levels.  He needed a urine sample too.  The lab closed at 5:30 pm, so since we didn't have the urine sample by then they sent us to another lab that closed at 6 pm.  

They gave Ainsley apple juice and at 6:05 pm she was able to go potty so we collected the sample and turned it into the on-call lab folks.  This was a tricky process--but we were relieved to go to dinner and know that all of the testing was done.  

Someone at the lab recommended a great italian place, so we tried it and it was amazing.  This is Ainsley and I do a "cheers" with butter.  Ainsley loves to "cheers" just about anything.  She will want to "cheers" our iced tea/milk about 10 times.   

Ainsley was SO tired, she laid down in the booth at dinner.  After dinner she got a burst of energy and was running around outside and having fun.   SO much fun that she threw up from all of the running, so we came back to the hotel and got Ainsley cleaned up. She was feeling much better by the time she went to sleep.  Thankfully she slept so good last night from 9 pm-7:30 am.  

Around 3 am Ainsley was restless in her pack in play so she felt much more comfortable in the queen bed--she slept sideways and got a great nights sleep.  Next up for this week--back to Mayo this morning for some paperwork, waiting to hear back about her tests and a final appointment on Friday morning.  We are heading to have one fun day at the Mall of America since we've never been.  We heard there are a lot of fun things to do for kids so hopefully we can have a fun, fun day with our sweet girl.  Thanks everyone for your prayers and thoughts for Ainsley--we couldn't have asked for a better plan with the doctors yesterday.  We are very hopeful we will get good news on Friday!