Wednesday, March 30

Day in the life of Ainsley today...

It is hard to believe our little girl will be 6 months next week! She is growing up SO fast!


A typical day for Ainsley includes...

Lots of smiles!


Having fun with her daddy--anytime she sees Ryan she just lights up!


She enjoys being read too--here is a new book stand from her Papa Bob! I just love the colors and it reminds me to read to Ainsley! Ainsley's Gramie Cohenour has been saving books for her even before she was born!


She loves to practice standing up!


Is starting to want to sit up!


I'm so proud to be her mama!


I thought blogger was extremely slow--it normally takes me 3-5 min to up-load each photo--then Ryan informed me is was our old computer (which is 5 years old). In the time I worked on this post--I also made dinner, washed dishes and unloaded the dishwasher...while stopping back by the computer to up-load another photo...guess it is time for a new computer, Ry will be thrilled!

Tuesday, March 29

Walk to snow...

Yesterday evening Ryan and I stayed on campus late to help judge student leader awards--so I picked up A from school and took her on a walk and then grabbed dinner downtown with Ryan. Ainsley loves going on walks--she was all smiles yesterday.


Then this morning we woke up to snow!!! Just a light dusting, but hard to believe it is almost April!!

Monday, March 28

Future alumni?

My dad bought these cute pink overalls for Ainsley this fall and she was finally big enough to wear them this weekend! Both of my parents and sister went to EIU. Ryan and I met there--and Ryan's brother also went to EIU! We think she may have to consider EIU in her college visits....in about 17 more years! Plenty of time to prepare!

Friday, March 25

Cardigans

Ainsley and me this morning--both wearing cartigans! I am in love with this little girl!

Thursday, March 24

6 Weeks

Yesterday morning the hospital called and scheduled A for her head CT for next Wednesday. Then yesterday afternoon the sedation nurse called and said since she had RSV they need to wait 6 weeks until they can sedate her for the test (by mask sedation).

I immediately thought--but she was sedated on MONDAY!?!? Apparatently that was a liquid sedation and those guidelines must be different. Here is Ainsley on Monday resting peacefully before her test--she did really well with this sedation. The cord on her foot was to check her pulse and oxygen levels during the procedure--before she went to sleep she found great joy from pulling on this cord and bringing her feet closer to her mouth!!


And here is our happy little miss in her carseat recently! Notice her favorite doll who is normally with her!

Tuesday, March 22

Tuesday...

Today I went to daycare over lunch to play with and love on Ainsley and she was not feeling well. Crying up a storm, lots of drainage from her nose and ear...Ryan took her into the doctor an hour later and they said she had a bad ear infection in one of her ears and that we needed to start her ear drops again. The doctor explained that since she has tubes in her ears the drops will help to wipe out the infection. Tonight she took a big nap when she got home, ate some squash, took a warm bubble bath and then went to bed. We are hoping a good nights rest will make her feel much better.

I will be excited one day to post about something other than the illnesses which seem to consume our time these days :)!

On a happy note--here is miss Ainsley in the car earlier this week. She loves to hold our drinks--I think because they are cold and feel good on her gums when she sneaks a quick lick on the outside of the cup!

Monday, March 21

Hearing up-date

This morning we took A in for her second sedated hearing test--we were really nervous, but also somewhat at peace ready to find out what our little girl needs for her hearing. She had to fast after 3 am this morning--and she was a trooper! They did the sedation around 10 am and she was pretty happy for having such an empty stomach. The test lasted around an hour and the Director of Audiology was so kind and helpful and explained that Ainsley's left ear is working great--which was GREAT news! She then said, she is still registering a mild hearing loss in the high frequency in her right ear and needs a hearing aid.


Our next step is to get her fitted in early April for the hearing aid and then she should have it in place by late April.

Things we are thankful for: Ainsley. We waited a long time for this little girl, so no matter what comes our way with her we are greatful for her. We are also thankful for...one fully functioning ear, a mild hearing loss, Ainsley can take off her hearing aid to go swimming, take baths, etc and still hear--when other kids with a more profound hearing loss don't have that option...

Things that we worry about: this being a permanent hearing loss for our little girl--it won't get better; her always needing to explain why she has a hearing aid, at some point her pink/sparkly hearing aid will be uncool for her and she may be embarrassed...we feel like these are things we can help her through and I'm sure the technology will improve greatly over time.

We are excited for her to get the hearing aid in place to see how much better she responds to sounds--we have already noticed a huge difference in her hearing since she got the tubes in place.

They said hearing aids last 4-5 years, so this first hearing aid will be pink, sparkly and girly to make it fun for her. The next set she will get to pick out herself at age 5 :)!

Sunday, March 20

Sunday with dad

This afternoon I went to the office to get some work done and Ainsley got to hang out with her dad! They watched NASCAR together--here is a picture of them as I was walking out the door. So cute!


Tomorrow we take A in for her repeat sedated hearing test. She can't eat 6 hours before the test--so we will wake her up at 2:30 am to give her a big bottle!! She gets prepped/sedated at 9 am, test at 10 am and we meet with the doctor at 11:15 am to get the results. Ainsley then sees her endro doctor in the afternoon for her 3 month check-up. Busy day for our little girl.

Saturday, March 19

Saturday fun

We've started a tradition in our new home on Saturdays- We start the day with a quick trip to Caseys to pick up--the Saturday paper, diet coke and doughnuts!

Ainsley looking at the Sears add for 2 seconds before it went in her mouth!


Ryan!



I've had two of these today....I need to phase out the Diet Coke soon :)!


We then we out to lunch in Cedar Rapids and went to Super Target!! I loved that store!!

Our little miss was coughing up a storm and sneezing in Target--by the time we left we had went though almost a whole thing of mini Kleenexes and she was tired--she fell fast asleep on the ride home, that girl loves her car seat!!


Ryan and I then spent the last two hours cleaning our house--we disinfected everything...I've been sick this week, Ainsley is getting a cold again and Ryan hasn't been feeling great the last two days--hopefully this will help! Lysol to the rescue!!


On a random note--I LOVE the Bath & Body new soaps!


I got all of Ainsley's toys rounded up tonight and was going to clean them too--and I thought, how do you clean stuffed animals and soft toys--she is always putting them in her mouth..any thoughts?


My sweet niece, Ava, celebrated her 9th birthday today! HAPPY BIRTHDAY AVA! We chatted with my sister and niece, Ava on facetime tonight!! I loved seeing them. They got to see Ainsley at bath time before she went to bed!

Here is Ava and her cousin Ainsley in late October!

Thursday, March 17

Up-date on Neurology visit

Thanks everyone for your thoughts and prayers for our little miss today! We spent our entire morning at the peds speciality clinic--neurology.

Ainsley and I before her appointment in the hospital walk-way. I was all smiles here--but seriously a hot mess! I read alot about her condition last night on-line and was a nervous wreck!


Since they squeezed us in between appointments--we had to wait over 2 1/2 hrs to see the doctor.
Off came the cute St. Pats day outfit--Ainsley weighed in at 16 lbs 14 oz!!


To pass the time--Ryan played some solitaire!


We practiced some standing!


After an 1 1/2 hrs of waiting--we played hang man on this cute chalk board.


We broke into our emergency store of formula--these to go bottles are expensive, but in a pinch are great!


Our little miss got a little sleepy after hour 2 of waiting :).


She took a little nap--and a few minutes later around 11:45 am the doctor arrived!


Good news: neurologically, she looks great! Some concerns: he confirmed her head is flatted on one side and her ears are off a bit due to that flattening. He confirmed we needed a CT before we move forward.

Based on the CT results they will (1) Worst case scenario: if her bone plates are fused they will need to do surgery (very rare) (2) More likely: she will need a band/helmet to help with the flattening.

We are waiting on a call back for them to schedule the CT--hopefully they will fit it in next week.

A sweet friend sent me a card today that says "God doesn't give us more than we can handle"...SO true! He knows our limits and has brought in good family, friends and doctors to help support our little girl through all of this.

Wednesday, March 16

Amazing

Ainsley's doctor is simply amazing! She contacted peds neurology for a consult for Ainsley earlier this week and said they would try to see her this week. I hadn't heard from them, so I called them today and they said their first available appointment was in September!!!!! I emailed my doctor and a few minutes later peds neurology called me back and said can you bring her in the next 30 minutes...I said I wish I could but I'm home sick. She said how about tomorrow at 9:30 am? And I said YES! I am so thankful we live in a town that has such good medical care for our little girl!

A friend send us this website recently--and I thought I post some pictures to help everyone see what Ainsley has (thanks Alysha!). The PT said the head is divided in 4 quadrants and our little miss has concerns with 3 of those due to her ears and flattening.


Ainsley has flattening on her right side similar to this picture.


This will be similar to what Ainsley will need--a helmet or a band:


I was so relieved to see these little cuties on the website (because the responded so well to this treatment)--they are quads from Dallas and I enjoy reading their mom's blog (Steeces Pieces):

Monday, March 14

Iced tea

Ainsley is just like her mama--she loves Iced Tea! Well, she really just loves to lick the outside of our glasses at restaurants--classy I know! I'm sure one day when she is older and she tries Iced Tea she will love it, but for now--just the outside of the glasses!

This was at a recent trip to Texas Road House!

Sunday, March 13

3

This is our little miss at church today--she loves to "talk" during the sermon...and is a really LOUD talker! We only had to take her out of church and walk around twice today--that is pretty good!


Our friends and family are having a hard time keeping up with our little Ainsley's medical conditions and at times we are too...so I thought I'd give an up-date on our beautiful little girl and what she's been through recently because we currently are juggling 3 conditions:

1. Hypothyroidism: Ainsley was born with this condition and takes a pill a day which gives her body what she needs since her thyroid isn't working. She sees her specialist every 3 months and gets blood work every 6 weeks to monitor her levels and make sure she is on the right does. We are thankful this is totally manageable!

2. Hearing: Ainsley has failed several hearing tests and in February was sedated to do a more thorough test--the results were..she needs hearing aids because she failed that test too...and then they put tubes in her ears because they thought the hearing loss was due to fluid. Thankfully she responded well to the tubes and she gets the sedated hearing test again next Monday to determine if there is hearing loss and if she needs hearing aids. We are praying that she passes the test next Monday. The test reeks havoc on her little body--because she is normally drowsy/sleeping all day.

3. On Friday we learned of #3 :(. Ainsley's head as been flat on one side for a while--our doctor sent her to physical therapy to check her neck muscle function to make sure she didn't have muscle damage which would make her favor one side. I took Ainsley myself on Friday afternoon to PT, because I thought it was just a routine visit to learn some tips for strengthening her neck. Good news--her neck muscle is great. Bad news--the head is broken down into 4 quadrants and Ainsley is failing in 3 of them due to (flat right side of her head, and the other two are her ears being off center front to back due to the flatting of the head). I thankfully had the nicest physical therapist who understood how shocked I was a took a long time to explain what steps we need to take next to help our baby girl. Our next steps are a CT scan to determine if there is any damage in the brain--she said this was HIGHLY unlikely because she is hitting all of her milestones (praise God for that)! and then she would need to be fitted with a helmet to help with the flatting of the head and the ears. She would need to wear this 24/7!

I left the doctor in a state of shock and thought can we handle this? Yet another thing to tackle..how much can Ainsley take--another sedated test...and then God stepped in. As I was loading up the stroller and Ainsley into the truck at the hospital (only 10 minutes after leaving the appointment), my doctor called me--at 5:30 pm on a Friday night. She was calling to follow-up on some lab work I had done earlier in the week that came back abnormal (that will be for another post--they are still waiting on one of my labs to come back which is checking for a clotting disorder, my one test that came back was high which she has never seen before). She said not to worry, so I'm not.

I was able to talk everything over with her that I just learned from the PT. It was AMAZING to be able to talk directly to Ainsley's doctor within minutes of learning this new news. God is good. She said she was going to consult with some neurologists on Monday and get back to us.

This weekend we let this new news settle in, loved on Ainsley, laughed with her, decided she is going to get one sparkly-pink-girly helmet and we are going to keep moving and enjoying life with her.

Last year when a friend was going though a rough time I sent her an email with this encouragement that I had read one time:
1. God is in control.
2. This too shall pass.
3. The best is yet to come.

Two months later--that same friend mailed me a card in late April after my mom passed away and it only said these three lines:
1. God is in control.
2. This too shall pass.
3. The best is yet to come.

It was so encouraging then and is encouraging now too.

We are going to help our little girl get through this new obstacle and then keep on moving and enjoy life with her.

Ainsley and me before we ran to town to do some errands--we washed the truck and shopped at Target!

Thursday, March 10

Book club fun

Tonight Ainsley and I hosted book club at our house. We were co-hosting with our friend Kate who picked out "Little Bee" for this months book. It is always fun to get together with this group of women!


Ainsley was all smiles before book club--but had some tears during, I think she was so tired. She finally fell fast asleep around 9 pm.

Cheri and her cute son Parker came to book club tonight--he was all smiles! Ainsley was very curious about Parker! Someone her size--she loves looking at other kids! Cheri has a blog (Rookie Iowa Mom--link on the side bar), I love reading her blog!




A quick photo shoot on the stairs!





Happy Weekend!

Rolling over

Ainsley loves to roll over these days--last night she rolled over and took the blanket with her! She thought it was so funny! She has a tight grip on her favorite doll, Matilda, from her niece Ava!

Wednesday, March 9

Happy 5 Months Ainsley!

Today our little girl celebrates 5 months!

These days Ainsley is:
*16.5 pounds! We celebrate this fact--for our little girl who couldn't gain weight initially!
*Wearing 6-9 month or 9 month clothes
*Loves to laugh and recently started giggling!
*Is adjusting to hearing things for the first time--she gets startled now by tv, my hair dryer, me opening a diet coke--we LOVE it because it let us know her hearing is improving.
*She loves, loves, loves her lady bug car seat attachment (best purchase I've made for her yet--I'll post pictures another day)
*She is a good eater--4-6 oz bottles every 2-3 hrs
*She is just starting to try out foods and so far carrots are a hit!
*Ainsley loves her daddy--she sees him as pure fun! And always has a laugh for him.
*She is a cuddler, which we just love!
*She always has smiles for us when she wakes up in the am.
*Ainsley doesn't mind having bows in her hair (her Aunt Angie will be proud of that fact)!
*Is such a good baby at the doctor with all of her visits--she just HATES her 6 week visit to the lab for blood work. It will be nice when she is older and we can take her for ice cream on her lab work days!
*Enjoys walks in her stroller--normally falls asleep!
*Sleeps through the night on most days: 8:30 pm-6 am.
*She has a favorite doll who we call Matilda--anytime we say her name she smiles!
*Wearing size three diapers these days!

Those are a few Ainsley up-dates to celebrate her 5 month birthday!

One last thing that she loves is when we ride in the backseat with her on the way to our home from work--she just smiles at us the whole time...it will melt your heart!

Sunday, March 6

Healthy again

Our little Ainsley was diagnosed with RSV last Tuesday which is a very bad cold in adults and super bad for little ones under 1 year. Thankfully Ainsley was a fighter and pushed through it! We go back to the dr tomorrow morning and hopefully they will give her the all clear to go back to day care! She was out Tuesday-Friday of last week--and had 3 doctors apts last week. I am so thankful they take such good care of her at our doctor's office.

And, I'm thankful she is feeling back to her old self--some highlights this week...lots of resting for our little one...


She started feeling better this weekend and found her laugh...


It was really nice this afternoon (40s--great for Iowa this time of year)--so I put A in her halloween costume since she never got to wear it this fall, and we went outside for a few minutes while Ryan was grilling. She loved it!


She is really starting to giggle, which makes us laugh!


Having fun with her dad!


Ainsley has a new love--Veggie Tales on our ipad!


More Veggie Tales with dad!


A started eating this week--we tried banannas (I know...we were told not to introduce fruits first, but I thought she would love them--but she didn't). She did LOVE carrots!


Bundled up for a trip out on the town!


Ainsley with her Gammie who she adores!