Welcome home!

I knew this week would be crazy before it started, but I did not expect this. Looking back, I can't believe we've only been back 7 days. 

So, like any kiddo who is in the therapy, when you return from a trip everyone wants to meet with you. So Monday to Wednesday Hannah had 1, maybe 2 appointments per day. Not bad, and I have to brag that everyone was SO impressed with her sitting. 

Another thing that happened is Eli started school! Yay!  

He was SO excited and did so well the first day!

That was Tuesday. 

Wednesday he woke up with a 101+ fever. Whaaaat? 

Definitely not in the plan this week. 

Because Thursday Hannah had an ABR (sedated hearing test) which had been scheduled for at least 2 months on a day Eli would be at school, right?

Wrong. 

By the time Eli woke from his nap Wednesday afternoon his fever had crept up to almost 104 and he was pitiful. 

So regroup. Keith stayed with Eli the next morning and I went with Hannah to the hospital. 

Besides having to fast Hannah did beautifully. Barely fussed at the anesthesia and slept through the entire procedure with just nasal sedation and not the IV. 

The results of her test were good. Her hearing is the same as it was 3 months ago, so hearing aids are still working well for her as evidenced by her continued babbling and reactions to sound. 

Our next steps are having her evaluated by a team of doctors on the cochlear implant board in Cincinnati. These doctors include a developmental pediatrician, an ENT, the surgeon, a speech therapist and one more that I cannot think of right now. Since Hannah has additional issues (not just hearing loss) we decided to go this route so that more eyes are on Hannah and nothing is missed. 

We also plan to meet with a cochlear implant surgeon in Louisville at the end of September to get his take on her. Regardless of where the surgery takes place, this evaluation will help either doctor. 

So, back at home...

Eli is still pretty pitiful sitting at the table with a blanket wrapped around him in August. Poor guy!

But we are making it. Today is Friday and tomorrow (or 5 o'clock today) cannot get here fast enough. 

Hopefully next week will be less drama-filled. 

Mama said there'd be days like this. 

Ahhh...beach 2015

There is just something renewing about sand between your toes and salt in the air.
The beach, it. was. nice.

The Wilson family has been going to the beach for as long as I can remember so I'm glad the tradition still holds and I can share it with my kiddos.  Of course, Hannah was not thrilled about the beach, except for the sand that she continued to eat, but give her a year and I bet things will be different.  

Sticking her feet in the Atlantic

It was nice to be on beach time and off therapy and appointment time.  I'm sure Hannah felt the same. We ate leisurely breakfasts and went out on the beach most mornings.  We took afternoon naps and ate lots and lots of shrimp.  

We waved to countless helicopters that flew over head and kept our eyes open for sharks but only saw a huge group of dolphins which was a nice surprise.  

We got up with the sun (or before it) because of Eli.  Most mornings he woke at 6 and does not know how to control the volume of his voice while others sleep, so we hit the sand early and took morning walks.  That's a nice time to be on the beach.

Eli loves the ocean and the waves, but knows how to keep himself safe.  It was fun to see him explore more this year.  

Another morning walk with my big boy. 

"You rule the swelling of the sea; when its waves rise, You still them."  Psalm 89:9

 Eli is also learning more about flying a kite.  The winds were high most days so it made for fantastic kite weather.  

Next year they won't be this little and I'm sure they'll be on to another adventure. I treasure these times with them. 

To say it was nice to "get away" is an understatement. I actually had not been to NC since before Hannah was born, but it was also nice to be away from the world of doctors and therapists pointing out things Hannah does wrong or constantly being reminded of her delays. This trip away caused me to let that go for a little while and just enjoy my girl the way she is and not worry about what she's not doing. 

I believe it helped her too, because while we were away she started sitting (yay!). Of course it's not for super long and she still falls over but it's an improvement and such a kind gift from God to this mama who doubts his goodness in my life so often. 

This trip and this girl are such examples of how the Lord knows me and how much he delights in his children. 

"For the LORD 

takes delight in his people; 

he crowns the humble 

with victory."

Psalm 149: 4

Let's Go Swimming

Over the past month Hannah and I have had the opportunity to go swimming.

Just us. No big brothers. 

We started aquatic therapy and I must say in Hannah's case it was a win-win. 

First of all the pool was a comfy 92 degrees, so basically a giant bathtub. We did it on Tuesday when big brother had other plans, so Hannah was well rested and to her it just felt like play time. 

She got to splash, float on her back, ride in a boat, all the while exercising and strengthening those trunk muscles. 

Her sitting is improving. She is starting to catch herself better and her left hand is opening and grabbing at toys more frequently and with more purpose. 

I wish we could continue this every week, but unfortunately this PT is also a professor and cannot do it during the school year, but maybe next summer when we are working on walking? 

All in due time. 

We are thankful for all the therapists and doctors who truly care for Hannah and our family. It's so refreshing as a Mama to have someone else love on and route for your child who isn't family. They push her, they make her cry but all the while she is learning and we are seeing progress. 

Today we also had beginning convos about cochlear implants with her audiologist. (I'll write a whole other post on that later), but it's just one more example of a doctor who wants the best and isn't afraid to be aggressive with treatment for a favorable outcome. 

"The LORD directs the steps of the godly. He delights in every detail of their lives."

Psalm 37:23

There it sits

For at least 24 hours Hannah's right hearing aid will be housed in the dry & store. 

Why you ask?

Because Hannah took it off and chucked it into the pool today, she's getting very talented with that right hand. 

Of course, this Mama didn't realize it until a friend's daughter swam over and picked it up. Nice. 

Recently, I feel like I cannot get it all together. Is this different than other moms? Just a stage in my kiddos lives? The new normal? I have used the phrase "I'm losing my mind" more times than I wish to admit. 

I guess it could be a new normal that I have to accept, but I don't want to.  

I'm a person who (in the past) prided myself on having things in order, organized. I arrived on time, maybe early. Now I'm just lucky to get there some days. 

I know the point of my life is not to "look" like I have it all together. And if you talk with me for 5 minutes you will realize that's not the case. You will see that I'm just as human as the next mom. 

Christ doesn't love me because I'm organized, on time or have things together. He loves me despite my prideful thinking that I could ever have it all together. He knows my mess and sits patiently until I slow down. 

I love that. 

My life has changed since becoming a Mom of two. No longer can I hold everything and enforce discipline on my children. I'm not strong enough. Physically or mentally. 

Christ tells us to "Come to Him... and find rest". (Matt 11:28) He can take my scattered, weariness and renew it just by being still and allowing his love to wash over me. 

I'm so thankful. 

So, as I look at Hannah's hearing aid in the dry & store, just sitting. It reminds me to sit with Jesus a little while longer. 

On the upside only having her left hearing aid may encourage Hannah to start pulling that one out and using that left hand more--always looking for the silver lining. 

"Cast all your anxiety on him 

because he cares for you."

1 Peter 5:7

Anger

It's a strong emotion. 

One few people like to admit they have a problem with. One that is kept away in public and explodes in private. 

Anger. 

I have been struggling with it lately. I'm not angry at one particular person or situation all the time, but when I let my guard down and don't cling to Jesus ugliness come out. 

I'm angry that my daughter has CMV and won't sleep. I'm angry when my 3 year old won't listen and disobeys. I'm angry that (in my limited perspective) we just can't seem to catch a break. 

I want my old life back. Well, I guess I do. I probably just want the life I "imagine" I want. You've heard all the clichés, the grass is always greener, blah, blah, blah. 

I have noticed that I get more angry when I have little time by myself, with the Lord, to refocus. I need to take a step away from my family to love them more. Of course this does not always happen and there are days I think nap time will never come. 

But it does. 

I've started reading a book by Paul Miller entitled A Loving Life. This book goes through the story of Ruth and explains in great detail her devotion to Naomi. Ruth left all she knew to love, support, comfort and just be there for Naomi. Whether Naomi wanted her or not, she was there. 

There is a lot from the book that applies to my life and the situation with Hannah, but this quote really struck me. 

"Ruth’s walk through the city gates, ignored and unthanked, vividly portrays the cost of love. Ruth bears the weight of Naomi’s life. We usually recoil from the cost of love, thinking it is an alien substance, but it is the essence of love. This is strangely encouraging because when the pressure of love builds, we think that somehow we showed up for the wrong life. This isn’t what we signed up for. But no,this is the divine path called love."

Some of my anger is steming from my selfishness--this is not what I signed up for. I think this quote helps me to look at love in a new light. Why I do what I do. 

I think this post needed to be written for my own sake. To put down how I'm feeling instead of just letting it twist and turn in my head. 

This is my life. I want to live it to the fullest, but I need more lessons in love. Reading about sacrifice like Ruth displayed for Naomi and the ultimate sacrifice that Jesus paid for us show me that I can do this life even if I don't always feel like it. 

Love bears all things,

believes all things, 

hopes all things, 

endures all things.

1 Corinthians 13:7

God Designs our Families

You know, I can relax a bit when I remember this truth.

God designs our families.

I have heard this a lot in the infertility world and adoption world, but since I am rather new to the special needs world I haven't thought about the connection, but it definitely applies.

God knew sweet Hannah and all her needs would be in our family from the beginning. Even if I never expected it. 

I am so glad He's got this!

Yesterday, Hannah turned 10 months!  Wow, 10 months where did the time go?  She continues to work hard with her therapies and is showing us so much more of her personality with every passing day.

Her main mode of transportation is still rolling, but she has started to army crawl, but usually ends up going backwards or in circles. She is eating up a storm, a few of her favs are yogurt, green beans and pears.  She is pushing up on straight arms (thank you to those who have prayed for this) and her left hand is definitely joining in on the action. She now tries to hold a toy with both hands, where before she would not bother and just swing it around with her right.

Today we will try out a thumb splint. This should help Hannah's thumb to stay out (and not in towards the palm) and help her hand to open more. This should encourage her to use it more often and strengthen her hand. You can tell that her left hand is weaker, but with this and other exercises it should get to where it needs to be.

Yesterday we started water therapy and it was a hit!  Hannah had so much fun kicking and splashing and spinning in circles (that's what happens when you only kick with one leg) but by the end of the session she was using her left leg too. We are thankful we can utilize an indoor 92 degree pool with all the toys and floats they provide. This therapy should help Hannah relax a little more and give her some resistance when trying to strengthen that core of hers.

Yes, our summer is busy but busy with the right things.

Eli is enjoying a week at Bug Camp, and even though I am not entirely sure what he's doing all day (he's so tired when I pick him up) he comes home dirty and tells us what some bugs sound like...interesting. Just what a 3 year old boy needs!

"I am the LORD, 

the God of all mankind. 

Is anything too hard for me?

Jeremiah 32:27

CMV Awareness Month

June is CMV awareness month. 

My newsfeed is flooded daily with different facts about the virus, different states that are fighting legislation to add CMV testing to the newborn screen. Friends and family forward me articles about CMV, books, etc. it's all good and I'm learning a ton.

But sometimes I think back to June 2014. When I was pregnant and ignorant. 

When I was decorating my soon-to-come 1st daughter's room and day dreaming about what her life would be like. 

This was definitely not in my dreams. 

Fast forward 1 year and we are filled to the brim with doctor and therapy appointments. We have learned more over the last 6 months about CMV, early intervention and all the acronyms that go with it to fill a book. 

This is not what I expected my life to be like. 

But this is my life. 

And honestly Hannah brings so much joy to it. She is the sparkle to my day and her smile melts me every time. 

She's worth all the energy put forth, even if I wish things were different. 

The following list are facts and data about CMV. Be aware you may find some things on the list shocking. I wanted to post this on the last day of June so that everyone can learn more. Also, if you know a friend who is pregnant or wants to be please forward this to her. You never know who you may help. 

Creating Awareness about CMV--some things you should know. 

1. Pregnant women should talk with their OBGYN about CMV.

2. Each year 30,000 babies (1 in 150) are born with congenital CMV. 

3. CMV is found in bodily fluids including blood, urine, saliva and tears. 

4. There is currently no vaccine. In 1999, the government ranked a CMV vaccine as top priority for research and industry.

5. Pregnant women are more likely to get CMV if they have young children at home.

6. CMV disabilities can be present at birth or appear later in life. 

7. Every hour CMV permanently disables a child. 

8. Only 13% of women in the US have heard of CMV. 

9. Each year CMV will be the cause of death for 400 babies and children in the US. 

10. Congenital CMV affects more babies than all current newborn screening conditions combined. 

11. Most OBs do not discuss CMV or CMV prevention with their patients, although recommended by the CDC and ACOG. 

12. CMV is the most common virus transmitted from a pregnant woman to her baby. 

13. Women who interact with babies and young children should be educated on CMV. 

14. Research has shown a link between CMV and miscarriage. 

15. Newborn CMV screening has significant potential for improving children's outcomes. 

16. CMV is the leading non-genetic cause of hearing loss in children. 

17. Up to 70% of children between 1-3 in daycare settings may have CMV. 

18. Most infants born with congenital CMV appear healthy at birth. 

19. Congenital CMV causes more disabilities than Down syndrome, fetal alcohol syndrome, spina bifida, and pediatric HIV/AIDS

20. CMV is the leading cause of Cerebral palsy in children. 

21. In 1993, only 3% of babies were screened for hearing loss. By 2001, 90% of babies were screened. In 2015 less than 1% are screened for CMV. By 2020 every baby should be. 

22. In 2013, one state passed a law requiring CMV education and testing. In 2014, two states proposed laws and in 2015, five states proposed laws. Is your state next?