Here we go…

This title can encompass so many things. 

A new year, a new school, a new start. I’m sure I’ve written about all of those, but this time it’s a new drug. 

As many of you know Hannah has been taking medicine to prevent seizures for over 18 months. While the med is helping breakthrough seizures (ones that happen during the day, and cause her to be unresponsive) she is still having seizures while sleeping. 

Small ones, 1-2 seconds in length. 

But, these small jolts to her brain are no good. 

They interrupt her sleep, cause her to not enter deep sleep and not store her memories. 

 Before Christmas Hannah was screened for a trial drug to help with this specific type of epilepsy. As of now there are no drugs that target these little nighttime jolts. 

Yesterday we were told she was accepted. 

Tomorrow we start the medicine. 

I’m anxious, I’m doing so many things around the house to keep myself occupied and Hannah is completely unaware. 

As always,  she will do what is asked tomorrow and we will pray that this medicine starts to heal her brain. 

Since this is a drug trial there is a 30% chance she will receive a placebo. 

Will you pray she receives the real drug? Right now, as you are reading this? 

I am thankful for this opportunity, for the medication and the doctors and the smile on my daughters face as I dropped her off this morning. I believe that God’s timing is perfect and trust this drug trial is part of that. 

God’s way is perfect. All the LORD’s promises prove true. He is a shield for all who look to him for protection. Psalm 18:30

A Puzzle

Who do I cling to?

From where does my help come?

My help comes from the Lord. 

Maker of Heaven and Earth. Ps 121

As many of you know Hannah has always been a puzzle to us. One of her early intervention speech therapists once described her like that, and even though it made me cringe a little, I think it defines her perfectly. As she grows older most of her decisions make sense to me once I figure out what she was thinking, but lots of times it’s like putting together a brain puzzle. 

One thing that a neurologist warned us about when she was 3 months old was the possibility of seizures. At that time, she had lots of other things going on so we just prayed that she would never have one and it would never be an issue. It’s actually a question I get every time we see a new doctor. And up until now I have always answered no. 

Well, it happened (see previous post) and even though I know many people have seizures and live fine lives with them I still did not want this for my daughter. I don’t like checking her every time she is lying quietly on the couch or feeling relieved when she comes into our room at 2am. 

Last week she had a routine EEG. Keith went with her and said she did very well. She sat the whole time and let them put tons and tons of probes all over her head. She was a rockstar, really. 

Going into this EEG we knew there would be abnormalities because her brain has been malformed since birth. But when a doctor schedules a telehealth visit at 9am on a Monday you know it’s not good news. Hannah’s seizure seems to have started some mis-firings on the right side of her brain. Left alone they could cause more damage. Medication is needed. We spent Monday waiting for her neurologist to call with an appointment which could possibly be the next day. 

After a lot of discussion between doctors it was decided that she could wait 3 weeks (insurance mandated wait period) for a follow up EEG. 

So we wait. 

This, unfortunately, is another piece of the Hannah puzzle. We pray that the right medication is easily (& quickly) found and that her hospital stay is as short as possible. 

A First

I’m writing this to document and to remember. 

Yesterday I had maybe the biggest scare of my life.  When I went in to “release” my kids from their rest time Eli said “Hannah’s sleeping with her eyes open”. Yes, it sounded odd. So, I turned on the light and went over to Hannah. She was unresponsive and was obviously seizing. I quickly lifted Eli off the soiled  bed and told him to get Keith. As I continued to shake her, he dropped the phone and came in and picked her up and said “we’re leaving”. It was at this point that I started crying and couldn’t quite figure out what to do except hold my daughter while Keith got everything together. 

Today she is back to normal. We don’t know how long she was unresponsive but I don’t expect it was long. Eli was beside her the whole time and showed great concern. 

After Keith and Hannah left I melted into a puddle on the floor. Eli immediately knew there was something wrong and told me he was praying for Hannah in his brain. (Oh. My. Heart). Suzi was crying but I don’t think it was out of concern for Hannah. Her little brain couldn’t comprehend the complexity of the situation. 

As we await next steps from the neurologist and check the box of one more thing CMV has added to my dear child’s life, I thank God for his control over my life. I know I really have no say in anything that happens to my children but I’m thankful I have a Father that does and wants good things for them. ❤️

Lately...

Yes I’ve been MIA lately. 

No reason really accept that every time I sit down one of my kids climbs on me, (which I’m expecting to happen many times before I finish this post) but that’s just this season of life, right?

Life has been full of good things. 

School, therapy, making new friends, spending time with family and more. 

Hannah’s IEP took way longer then we expected, but it seems Wake Co is behind so she just recently started school. 

This made me very anxious at first, but looking back it gave her time to adjust to a new place, get set up with new doctors and have a semester of speech therapy at UNC before she started 4 day preschool. 

I struggle with wondering if I’m doing enough for her, but trying to be at peace with what we have right now. 

I’m sure there is always more that we can do, but weighing that against what’s best for our family as a whole sometimes changes things. This does not always permit us to put all our efforts into Hannah, however much we want to. 

I think we are settling into life in NC. We have found a church that provides fellowship for our entire family and opportunities for us to serve. 

Eli is registered for Kindergarten and I really think he’s ready. This year of transitional Kindergarten has been a great jumping off point for him and he loves to learn. 

Hannah started 3 year old preschool through the public schools on January 2nd. Since we’ve had a good deal of snow she’s actually only gone 6 days so far, but we are hoping this last snow storm was the last. 

Hannah was placed in a developmentally delayed class with other kids who have speech delays plus. Her teacher is great and I have noticed in just the short time she’s been there how much she is retaining. I’m excited to see how she progresses. 

Of course she will have her 2nd cochlear implant surgery in a little less than a month, so that will cause her to miss school as well, but such is life with a complex 3 year old. I am looking forward to how this will change her speech and listening reception. 

Suzi is growing so quickly. She turned 18 months right after Christmas. She is always trying to keep up with her older siblings and continues to amaze us with her cuteness and personality. 

These kiddos keep us busy but we wouldn’t have it any other way. 

No Change

"No Change"

That phrase can be perceived positively. 

Like there is no change in location or no change in the time of the event. Everything is as expected, no need to switch your plans. 

Or negatively. 

There is no change in the diagnosis or no change in my answer. "Yes, kids we are going to the doctor, the plans did not change". 

In Hannah's case it's a both/and. 

Hannah had a sedated hearing test a few weeks ago and there has been no change in the hearing in her right ear. 

But also, there has been very little change in her speaking ability. 

Her speech therapist calls Hannah a puzzle. She does everything in her knowledge box to help get Hannah to say more sounds, but the tricky thing is, some days Hannah talks a lot and other days she is completely silent. 

And no one can figure out why she does it. 

Is it because she can't hear us?

Does she not want to hear us?

Is it because she's two and just doesn't feel like speaking at that time?

Yes, a puzzle. 

In a meer 3 months Hannah will have completed her early intervention therapy and will be ushered into preschool. 

This preschool will be specifically designed for kids with hearing loss and I do believe that it will make Hannah speak more. The daily routine of school, the pressure from her peers, etc. 

Right now the professional opinion is not to move forward on implanting Hannah's right ear. The doctor thinks her hearing aid is giving her enough amplification to allow her to hear well. 

I tend to agree. 

We will continue to check it every 6 months. 

There are no reasons to think that Hannah won't speak, and it does seem like she understands everything that is being said, so again it's a puzzle. 

One that is hard to be patient on putting together. 

 

That darn cast

It's baaack!!

The night before we had it put back on I seriously couldn't sleep. I just knew Hannah would take it badly, meltdown in the doctors office and be very frustrated. 

The casting went surprisingly well. Hannah sat patiently and curiously as the nurse put it on only to discover she had done it wrong and had to take it off and start again. At this point I was getting nervous, but the second attempt was successful with both attitude and action.

 

You see last week she had her first occupational therapy appointment since before Christmas. During OT her therapist really pushes Hannah and doesn't let her use her right hand. This is to strengthen and help her hand work correctly. Well, during this appointment Hannah would do nothing and got very upset. The only thing she ended up doing with her left hand was eat cheese (her favorite food) so this was discouraging for me. But it also showed us that the cast needed to go back on. 

She is adapting and usually with a smile so that is a blessing. The Lord has been gracious to her through all the tests the past few months. 

She'll have the cast on 4 weeks this time and then hopefully we can take a break...hopefully. 

We have more decisions to make about Hannah's continued therapy and other strategies to try with her left hand specifically. Please pray we would have wisdom. 

I'm coming to the realization that CMV will never leave our lives. Hannah will never "arrive" and be rid of the effects of this virus. 

That's hard to except. 

It's actually gotten me down lately, but I do have to remember the Lord's faithfulness to Hannah and us in the past and remember he never lets us go. 

In All Things Give Thanks

It's that time of year again.

Thanksgiving. 

When we stop and gather with family and friends and give thanks to God for all we have, where we live and what we are able to do. 

Since I was a little girl I've always loved Thanksgiving. It's nestled nicely between my birthday and Christmas. Included with it are chances to see people I haven't for sometime and the menu is delicious!

When I lived overseas Thanksgiving became an even greater event.  Since we were all far from home, everyone on my team would make their favorite foods and a lot of them.  We would feast and watch Christmas movies for a few days and forget we lived in a foreign country. Haha..

Since Keith and I got married we always make sure we invite others over for the holiday and invite family to come whenever possible. 

Most of you know from reading this post and this post that in 2014 Thanksgiving changed in our family. I still love this time of year but let's just say it now brings up a lot of emotions in me that may stay dormant most of the year. 

It is interesting the Lord caused Hannah's diagnosis of hearing loss and CMV and her cochlear implant surgery to both happen around Thanksgiving. Really within days of each other. 

From two years ago, with an itty bitty baby in my arms, not knowing what she would be able to do, or say. To today, watching my sweet, determined little girl continuing to amaze us at all she has accomplished and can do. 

So, as I sit here days after Hannah's surgery and days before her activation I thank the Lord for redeeming this time of year for our family. 

I thank Him for giving us hope and continuing to amaze us at His love for us, His children. 

During this time of year this sits on my mantle. 

 

But I think I may need to keep it up all year. It reminds me of how good the Lord is to us and how many times I forget to say thanks.

In the spirit of Thanksgiving I again want to take the opportunity to thank all of you for your service and prayers for our family.  For loving us in more ways than I can even think through right now and lifting us up in prayer when we didn't know what to pray.  Hannah is a product of those prayers and as her mother I am forever thankful for people like you who intercede for our family.

"Give thanks 

in all circumstances; 

for this is God’s will 

for you in 

Christ Jesus."

1 Thessalonians 5:18

7 days to go!

 

Written by Keith

Thanks for all the prayers for Hannah!  We have been quarantining the family as much as possible.  We have all been pretty healthy so far.  Hannah had a day bug last week but thankfully it came as fast as it went.  We have been debating this but we are going to do some light trick or treating tonight.  Prayfully the open air & antibacterial wipes will prevent infection.  This is the first year that Eli fully grasps the concept that trick or treating = candy & fun.  So we didn't want to rob him of the experience.  

 

If you have an opportunity to pray for Hannah this week.  Here are some things that have been on my heart.

- Please pray that the family stays well this week in preparation for Hannah's surgery.  Also pray for the health of my parents as they are coming up on Sunday to watch Eli for the surgery & to provide helping hands post surgery.  

- Pray that God directs the surgeon's hands during this delicate surgery.  

- Pray for Hannah to have a speedy recovery.  In many cases cochlear implants can be an outpatient procedure.  Hannah is staying the night because of the issues with her brain.  There are unknown risks.  Specifically pray that she does not have any seizures.  Kids with her brain condition are more susceptible.  

- Pray for Ellie and myself to love each other during the additional stress

- Pray the surgery is successful and that Hannah will be able hear!  This is really exciting for me.    

This is step 1 for Hannah's hearing & speech recovery.  The link below is a first hand story about what Hannah will go through.  Cochlear implants are not the same as glasses or lasik.  They will help her hear but the hearing is different.  I don't really understand what different means but she will have to learn to hear in a different way.  Learning to hear is not something I really ever thought about.  

http://handsandvoices.org/deafhardofhearingchildren/inspiringdeafandhardofhearingteens/

Lastly please pray for Ellie & Hannah post surgery.  Pray that Hannah will learn to hear & speak.  This learning means more doctor & therapy appointments.  Ellie is a trooper & doesn't talk about this much but it is physically taxing on her.  Hannah has already had a 100+ appointments this year! Pray for endurance and patience as she will need to have more speech therapies post surgery to go along with the other physical stuff.  

 

Thanks so much for remembering our family during this time. We will keep you updated!

"And we are confident that he hears us whenever we ask for anything that pleases him."

           1 John 5:14

Casty

Yes, she's still with us. 

She's proven frustrating. 

She's been used as a club and other not nice things. 

She's been a pain in more ways than one. 

But I really think she's helped. 

 

I now can leave Hannah to eat her yogurt all by herself! Of course it's still messy and I have to help her at the end but it's a big accomplishment. 

We have been doing as many things as possible to help that hand and use that side of the brain. 

 

Since she is such a determined little girl having no right hand has not stopped her. Even her occupational therapist thinks she will miss the cast. I probably wouldn't go that far, but I am glad we went ahead and did it. 

 

Not everyone in the house is a fan. 

Just a few more days and she will be back to two hands and we shall see how she uses them. 

Today also marks one month until surgery. Right now Hannah is healthy and everything is still a go for the procedure. Yesterday we received her last earmold for that left ear, in a month no more molds!!

Thank you for your continued prayers. Most importantly for her health and that everything works for the surgery to take place on November 7th. Also, please pray for our family as we will leave Eli with grandparents and I'm sure Hannah will need some extra holding during that time. Jealousy can run high in this house!

 

"As for God, his way is perfect: The LORD's word is flawless; he shields all who take refuge in him."

Psalm 18:30

Scheduling

Many days I spend a lot of time on the phone. 

Scheduling appointments. 

Calling people back. 

Straightening out bills. 

Etc. 

I feel like I've kind of gotten down what to say, who to ask to speak with, what questions to ask and to not leave a message for them to return my call at a convenient time, because who are we kidding? The reason I called at this time is because it is convenient for me!

Well, Hannah had her cochlear implant phone interview last week. We were told that someone would call to schedule an ENT appointment, 2 therapy evals and an appointment with a social worker. 

Not wanting to lose anytime I decided to call up there the following day to go ahead and make them. 

"The referrals are not in the system". 

So the following day I called again. 

Same answer. 

I was put in touch with the social worker who was on the call and she told me the name of the lady who should call me and she wasn't sure why it was taking so long. 

Well, a few days later we all realized this lady had been out of the office for 2 weeks and had just returned. She's the only one who can make the therapy appointments and now she has a backlog of appointments to schedule, but Hannah is on the list. 

For some reason all this waiting, not being able to move forward or do anything really got to me. I mean, does no one understand our situation? We're kind of on a clock and if scheduling initial eval appointments takes this long will she even be able to have the surgery before the end of the year? 

All this was going through my mind at 3am. Lovely. 

Well, after going a little crazy I finally calmed down and resided in the fact that these appointments would not take place before baby #3 comes. We would have to wait. 

This calmed me and frustrated me all at the same time. 

Even if no one else knew our timeline, God did and He could have gotten us good appointments or at least in with one of the doctors before the baby comes. 

But He didn't. 

And that's when I realized (again) that all this is out of my hands. Sometimes I feel like "if only I had ______". 

Called sooner. 

Pushed a little harder. 

Asked more questions. 

Even if I have a perfectly articulated plan or speech things will fall into place in the right time. 

After getting a call from Cincinnati yesterday afternoon and scheduling appointments for late July/early August I felt relieved.--To have something on the books and to not have to worry about rushing up to Cincinnati during my last weeks of pregnancy. 

I'd say God knew that all along. He wants me to focus on this new little one to come right now and having those appointments at that time will allow us to push pause a little bit on our crazy schedule and adjust to our new family. 

I love that he cares more about my needs and my heart then the schedule I think I should keep. 

So, here I am at 6am on a Saturday morning with things still running through my head, but also overflowing with thankfulness that I have a Father who arranges every step and will help me articulate my words when I call about another bill on Tuesday. 

And so I don't forget to document life while also learning so much about being a mom of a child with extra issues here are a few pics from this week. 

Eli's last day of school for 2016. Next year he'll be a big 4 yo preschooler. Sniff, sniff. 

Mrs Kara. Eli has been in her class the last 2 years!

Hannah & I sharing a soft pretzel on one of our last alone dates before the baby comes. 

So thankful for my little family & this crazy life. 

Typical, Not Typical

Life moves at a steady pace when you have 2 little ones and are expecting another, a little too steady in my opinion. 

Our days and weeks are full. We have at least 1-2 therapy appointments (in home) a week and then at least one doctors appointment, maybe more. 

One thing that has been happening (not intentional planning on my part) is Monday's are usually free, which is nice. It gives the kids and me a day to come down off the weekend and just play at home, which I think we all need. 

There are times when I think we look so typical and other times I know we don't. 

Yesterday was one of those days. Hannah had her first booth hearing test. The one she's awake for, has to let us know if she hears sounds, knows where they are coming from, etc. 

I went in to this appointment not expecting much. I didn't think Hannah would perform and we would probably leave with little data. Well, it was rough, because what 19 mo old wants to sit and just turn their head for a sound? But she did come out with some data. 

Her hearing has declined. 

We are not sure exactly how much, but from what the test showed, a survey I took about Hannah and the fact that she isn't readily adding new words to her vocabulary all point to that conclusion. 

Not typical. 

So her doctor wants to move with a cochlear implant evaluation in the next month. This means meeting with an ENT, a speech therapist, a social worker and someone else to all evaluate Hannah and see if she is a candidate. I'm sure it will also mean scans of some type because they need those to make sure everything is good internally for surgery. 

I'm trying not to get overwhelmed. 

And pray that this baby (who is due in 8 weeks) is flexible. 😉

We knew that this would happen all of a sudden and yes it's not great timing for our family, but I'm trying to take it in stride. Who needs "nesting time"

for a 3rd child anyway??

The more Hannah grows and progresses I see the perfection (if you want to call it that) in Eli. 

The fact that his feet move correctly.

His hips are straight. 

He has good balance. 

He did things, like walking, on time (even though I thought he was behind). 

He can hear me when I whisper. 

He calls to me from another room. 

And it points out how atypical Hannah is. 

Keith reminded me last night that this is why we are doing so much for Hannah, so she can have the best shot at a mainstreamed, normal life. His and my prayer is that if we put extra effort in now it will benefit her later. 

Hopefully. 

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."

Isaiah 41:10

Hannah Update

Over the past week and a half we've had appointments every. day. For some reason every doctor appointment (new or follow up) landed this week, so needless to say we are a little exhausted and ready for the weekend. 

Overall Hannah is doing well. She is cruising the furniture, balancing on her own for seconds at a time, responding to more sounds, learning new signs and more. For all of these things we are so thankful, but with any appointment there is always the possibility of new issues coming up. Things we never thought of or even knew about. 

One thing that came up a month or so ago is Hannah has a slight pronation on both feet, meaning her feet turn in instead of lay flat, making it harder to walk and balance correctly. Even though Hannah has learned how to walk around on feet that are not completely flat it could pose problems in the future. It can effect her knees, hips, etc so we bought some shoe inserts to help correct the problem. She was also measured for SMOs (one of this week's appointments) that she should get within the next month that will also help her feet and balance. So, hopefully we are on the way to independent walking. 😊

This week we also visited Cincinnati Childrens hospital for 2 follow-ups and an evaluation at the rehab clinic. All of the therapists we met with in the clinic were very encouraged by Hannah's mobility and the PT even said she probably won't need the SMOs for very long. Yay! 

The doctor also had Hannah get a hip x-ray to see if they are in alignment. Of course, they aren't (one of those unexpected things) so she called for an ortho eval. At this point I have no idea what an ortho eval even is and have already had one conversation with the nurse and plan to call her back today with more questions Keith and I came up with last night. 

Even though Cincinnati Childrens is an amazing resource and is only 1.5 hours away it is not feasible for us to go there much more than every 6 months so yes, we have many questions. 

I know life is just like this. Whether you have a child with additional issues or not. 

We appreciate your prayers for wisdom in all her health decisions and that she will continue to make lots of progress. 

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."

Romans 15:13

All the way my savior leads me

This morning I woke up earlier than all others in my house, probably because my mommy brain just turned on early and not because I was fully rested. Facebook reminded me of this post that was written a year ago. A post that was shared and commented on more than 700 times.

As I read over the re-posts and comments and tears ran down my face I was reminded of just how many of you have held us this past year. How many of you have prayed, asked your bible studies and churches to pray, and truly cared for Hannah and our family. It's almost too much to express in words--the power of prayer.

There have been times, many times, we did not know what to pray or how to pray and you prayed for us.

Thank you. 

As I think back on those dark days I'm reminded of those of you who never left us and a God who hasn't either. Through all the questions, unknowns ups and downs the Lord has been leading us and keeping our heads up. 

When we didn't feel like venturing out to a doctor appointment on a cold winter day the Lord motivated us and helped us through. When we felt at the end of our rope and very sad in the diagnosis a friend would call and encourage us. When I felt very alone in a house with two youngsters a friend would call and ask to stop by. 

All of this was the Lord leading us and you praying for us. 

This morning we also had Hannah's one year assessment for first steps--Kentucky's early intervention program. 

As I sat there, across the room from Hannah, watching her engage with therapists, jibber jabber with strangers, point, make eye contact and sit up the whole time my heart was glad. Of course glad at the progress, but also glad about the girl she is becoming. A girl who yes, needs a little more help, but doesn't let that stop her. A girl who, through God's grace, is determined and willing to work hard to accomplish every day tasks. 

I started to think if she works this hard at simple tasks how hard will she work when the goal is larger and and the outcome greater? 

So much of her personality is just emerging and it's a sweet sight to behold. 

There is still so much we don't know about Hannah's future, but we know who holds it. The same One who has walked with us this past year and since the beginning. 

It's hard to find the right words to thank you all for your prayers and love so I'll simply say thank you. 

From the bottom of my heart. 

Good Father, Good Fall

Many of you have probably heard the song "Good Good Father" sung by Chris Tomlin.

Every time I hear it I cry. He is so good. I look back on where we were a year ago...

No sleep. Colicky child. 

No idea our child had hearing loss or CMV. 

Struggling as we added another child to our family, but thankful at the same time. 

and as I look back I'm amazed at His goodness. 

Believe me when I say the grief is still fresh. I think back to Thanksgiving 2014 and never want to re-live those days. I remember crying so much my head hurt, arguing with Keith about what we should have done. 

What the doctors didn't do. 

And feeling very alone. 

I don't know when those days will fade from my memory, but I want to remain faithful even if they don't. I want my kids to read this blog in 20 or so years and see all that God did in our family through the addition of Hannah. 

This year things are brighter. Our girl is progressing, slowly, but still progressing. 

I think we've accepted it, for the most part, and are trying to move on to a new normal. 

Things are different, friends are different and the way we look at life is different. Many people in our life have continued to come around us, pray for us and encourage us (especially from afar). But the special needs title is a lot for some so a few friendships have been lost and that's okay. 

We are thankful that we do believe in and serve a good, good father who is perfect in all of His ways. It's a love undeniable with peace that is unexplainable. 

Peace may still be hard to feel all the time but I know He gives it to me lavishly. 

And for that I'm thankful. 

"Be thankful in all circumstances, 

for this is God's will 

for you who belong to 

Christ Jesus."

I Thessalonians 5:18

Don't Worry About Tomorrow

A few months ago I was checking out at the grocery store alone, a rare occurrence. As I moved to the front of the line I noticed the clerk checking people out was only using one hand to scan every item and put them in bags. At first I thought she did not have a right hand, but as I got closer I noticed her right hand was just down by her side, lifeless, like she didn't even know it was there. 

I really wanted to ask her why she couldn't use that hand, what had happened to her hand, but in the 30 seconds I stood there before her I could not figure out an appropriate way to ask without coming across insensitive. Also, I didn't have Hannah with me, who usually helps me to start those types of conversations. 

A few months ago we knew Hannah had trauma to the right side of her brain because of the CMV, every doctor and therapist told us this would lead to left side weakness but we really didn't know what that would look like down the road. 

When I saw the clerk in Kroger I got a glimpse of what could be. 

I started to worry. 

Now that Hannah is moving more we can see how much she favors her right hand and how hard it seems to be to move her left. 

It's hard to pull up with one hand that's stronger than the other. It's harder to crawl, it's harder to eat. 

For the most part Hannah is adapting. I am amazed at what she can do with that right hand, but we want her to use her left too. 

And we don't want it to be so hard. 

There are days when she puts things in that hand, brings the left to a toy, claps, and more. But at other times it seems like she is totally disregarding it. 

As I understand it, using her left hand doesn't make sense in her brain. Even if she was older and could understand me telling her to move it she could not do it. 

That's why she's in therapy. 

That's why it's important to start early and work with her hand often. 

I wonder if the clerk at Kroger had therapy or the chance to use her hand?

It's hard not to constantly wonder what the future will look like for Hannah. What she will do, how she will be looked at by others. 

That's why I entitled this post "Don't worry about tomorrow" because I know God has given me enough strength, love, grace for today. That's where my mind needs to be. That's where I need to place my trust. That God has this. That he has Hannah in His hand. 

Would you pray that our family will focus on today and not what may happen tomorrow? Believing God is full of grace for the unknown. 

Also, will you pray Hannah will be able to crawl?  We've learned that pushing up to a crawling position can significantly increase the strength of her left arm. 

We know this is possible, but it's hard. 

Thank you. 

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Matthew 6:34

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?

Over and Done.

This Sunday, June 7th, marks 6 months of Hannah being treated for CMV on anti-viral medication.

6 months of hearing the word Cytomegalovirus (CMV)

6 months of a diagnosis. 

6 months of hearing aids. 

6 months of therapy. 

6 months of multiple doctors appointments and insurance claims. 

Six months. 

This week I have been thinking a lot about how our lives looked then and how our lives look now. A lot of the emotions from those early weeks after the diagnosis have resurfaced.  The initial grief that set in has given way to more answers about the virus and encouraging doctors appointments. 

Getting in so quickly with an infectious diseases doctor was a blessing. This team of doctors and nurses helped to answer a lot of questions and give us hope. 

Nurse T that could always make Hannah smile. 

I am glad we don't have to drive downtown for an appointment anymore, but I will miss our monthly visits. Just a chance to talk about all that Hannah is doing and simply have another set of eyes evaluate her on a regular basis. 

NP Kristie. A blessing. She always took plenty of time with us & loved seeing Hannah. 

But now that's over and done. 

On June 8th I will not give Hannah her medicine. 

Instead I will pray that the virus remains dormant and does not effect Hannah's body anymore. I will pray, as many of you have been these last 6 months, that there will not be any lasting problems with her body outside of the hearing loss and Hannah can live a normal life. 

This is not easy to do, but it's necessary. 

To continually lay my plans for Hannah and her health in The Lord's hands. 

Thank you from the bottom of my heart for praying for Hannah. Thank you for remembering her and bringing her needs before the Father. You have carried us these last 6 months and I know no diagnosis can account for the work of grace in a person's life. 

So, {deep breath}, we are done with infectious diseases.  But everything else remains the same. We are still plugging along at therapy and still taking a trip to Cincinnati Children's every 6 months. We are still visiting the audiologist 2 times a month for ear molds and hearing tests. 

Yes, I wish we were done with everything and these things wouldn't interrupt our life anymore. But, after 6 months I think I've resided to that fact that this is our life. It's hard for me to imagine what  it would be like to not have so many appointments and a girl who needs a little extra help. And for my own sanity I don't let my mind go there anymore. 

I focus on what is. And what is, is pretty great. 

So, as we say goodbye to the University of Louisville pediatric infectious diseases office (say that 5 times fast) we say hello to the next chapter on the Hannah journey. I don't know about you, but I'm looking forward to it. 

For those prayer warriors out there who have been praying for Hannah and don't want to stop--here are a few updates I'd love for you to pray for (+ anything else you think of). 

1. Pray The Lord will strengthen Hannah's left side. It is weaker because of the CMV and that makes it hard for her to sit and keep her balance. 

2. Pray Keith & I will have wisdom about next steps with Hannah's hearing. If she becomes a candidate, Hannah could get cochlear implants within the next 6 months. 

3. Pray the Lord will do great things in Hannah's life. 

'Call to me 

and I will answer you 

and tell you great and unsearchable things you do not know.'

Jeremiah 33:3

Thank you. 

Wait and See

That little phrase seems to be the theme of my little girl's life.

Wait and see. 

You never really hear it in a positive context, especially when it comes from the mouths of specialists, therapists, pediatricians. 

Will she need cochlear implants?

...wait and see. 

Will she learn to grab with her left hand?

...wait and see. 

Will the brain trauma she suffered in utero effect her long term?

...wait and see. 

Well, this week we heard it again. 

This time from her pediatric ophthalmologist. We went in for a 6 month check up and she noticed that Hannah's left eye was not tracking like her right (grrr, that left side). So this week we are experimenting with an eye patch. 

And now we must "wait and see". 

I covered her left eye yesterday and she was fine, except not really liking the patch and trying to take it off. Today or tomorrow I will patch the right. If she gets angry and cries there's probably something wrong. 

It's hard on many levels but one thing Keith points out, almost daily, is how beautiful she is and all these things she has to wear takes away from that. 

Some of you may not have seen her new hat. 

This is the hat she must wear so she doesn't pull out her hearing aids. So now we've got hearing aids, a hat and now possibly a patch. 

Poor thing. 

Lord, help others to look past these things and see the beautiful little girl you've created. 

Help us to "wait and see" what you will do in her life with great expectation. 

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Romans 5:3-5

Maddie's Mission

I guess you can say I'm still reminiscing about our time in Austin.

However it does help that the weather in Louisville is absolutely gorgeous this week, so at least we didn't come back to rain and cold weather.

While we were there we got the chance to take some family pictures--yay!

A friend of mine is an amazing photographer and is really able to capture "moments" and not just your standard photo.  So, we were excited when she was available to spend some time with our family at a nearby park.

Of course this is what the weather was like when we arrived...

But the sun quickly came out.  

After our time together Lynn told me about a friend of hers who also had some sad experience with CMV.  Her daughter was named Maddie and her story is at the link above.  

It was so encouraging to talk with someone who had at least heard of the virus, however due to unfortunate circumstances.  She told me her friend had started an organization called Maddie's Mission in the Houston area and I should check out her page.  

Her website does give a lot of the facts and has some encouraging stories of kiddos who are doing really well (which you don't find online very often).  This organization is fundraising and working with TX representatives to increase the awareness of the virus in that state.  Bless them!

I have contacted this organization and a few others, when I come across them, to see what they are doing.  I do pray that my kids will not have to worry about this virus when they have kids.  

I'll leave you with a few other photos from our time together.  If you are in the Austin area and need a good photographer make sure you check out this link you won't be disappointed!   

priceless snuggles

 finally getting my girl to smile!

father & son

I love you

"Therefore we do not lose heart.

Though outwardly we are wasting away,

yet inwardly we are being renewed day by day."

2 Corinthians 4:16

Appointments, appointments.

Last Wednesday we woke both kids up entirely too early and hit the road for an 8am appointment in Cincinnati.

Our sweet boy did amazing. He's a great car traveler, but also did very well in the appointments. We were teased on the way in, however. We passed a nice, empty, covered (it was raining) playground and went back to it between appointments only to find out it was only used for special kids that have class there. Bummer! But, chic fila was not far away.

We saw a developmental pediatrician (Dr. W) and a neurologist (Dr. S). 

In short, the appointments went very well. Both doctors were impressed with how well Hannah is doing and even though she is behind she should walk and talk and live a good life. Dr. S even said we should only come back to see him if we think it will benefit, so it's good to know they see lots of promise in our little girl. 

As I've mentioned before her left side is slower because of the right brain trauma. 

If you are around her you will notice she keeps that hand fisted and does not use it to grab like she does her right. Because of this Dr. W did diagnosis her with mild cerebral palsy. We fully expect she will grow out of it, but there it is just the same. Having this diagnosis will help with insurance and getting additional therapy if needed. 

We also learned a lot more about hearing aids vs. cochlear implants. We learned that Hannah's team of doctors (Dr. W, her audiologist, the surgeon and possibly her therapist) all have to agree if/when she is a candidate. It seems that hearing aids are better for hearing low, bass tones while CI are better at hearing high, softer sounds. Some doctors think having one of each is the best case scenario, but new technology is coming about all the time, so we will weigh the pros and cons if we get to that point. 

We plan to return to Cincinnati when Hannah is 12 months for a checkup and to decide her next steps. 

We are so thankful for the team of doctors we are working with. She is in excellent hands. 

We are also so thankful for all of you. Your prayers, words of encouragement, emails, texts mean the world to us. 

Please continue to pray for Hannah's left side--that she will learn how to use it properly and bear weight on her arms. 

She has another sedated hearing test next Thursday 4/23. This again will see if her hearing has gotten any worse and will allow us to adjust her hearing aids if needed. I'm not excited about this test, but know she needs it just the same. 

The king's heart 

is like a stream of water 

directed by the LORD; 

he guides it 

wherever he pleases.

Proverbs 21:1