Trying Hard

Hannah has always been the worst most challenging sleeper in our household. Since the day we brought her home she hasn't wanted to sleep. She went down to 1 nap/day at 11 months and when she was around a year old she finally slept through the night (after much trying) but at times it's still touch and go.

I always heard stories that kids don't sleep well when they are learning a new physical skill. I guess Eli went through this, maybe, for a couple of hours 1 night a long, long time ago.  So yeah, I don't really remember. 

Since Hannah is approaching 16 months and delayed physically I kind of thought we skipped the sleeping issues due to skill learning. Wrong. Last night she woke sitting in her bed, trying to pull up on the railing and very awake. Yes, the bed will be lowered before bedtime tonight. 

I'm really so proud of her and she's proud of herself. She is the child that really wants to move, she wants to get up, see, follow the big kids, etc.  But many times her body will not allow it. 

We still have to put her in the infant room at church because she's not walking, which she hates, and I get called out about every other week because she's so unhappy. One week I went back and they had her in a swing, so yes she has graduated from the infant room, but there's just no other place to put her. 

Her major mode of transportation is rolling right now and she has perfected it to a tee. She will roll from the living room to the kitchen, down the hall, into her room, Eli's room and everywhere else. And she's gotten really, really fast. Of course she doesn't realize that it would be faster and easier if she crawled, but her left side just won't allow it. We have been told once she's walking we can do things to help strengthen that left hand and arm, but at this time crawling just isn't happening. Her brain cannot figure it out. So, she rolls. 

I'm sure I will look back on the rolling days with fondness in the not so distant future, but now I just want it to be easier for her. I guess that will never change. 

Whatever you do, 

work at it with all your heart, 

as working for the Lord.  

Colossians 3:23

Christmas came early

Since we will spend time with family on Christmas Day we decided to have our family of 4 Christmas this past Saturday. 

We woke up to two little elves in our bed. 

After Keith made a delicious breakfast the present-opening began. 

Eli still has a little trouble moving on after he opens a fun gift (because he wants to play with it right then and there) but he's getting better. The fact that most of his gifts were in bags helped out big time! 

Helping Hannah with her gift from him. (So excited!!)

My two little munchkins had a blast. Eli with the toys, Hannah with the massive amounts of paper. But, I have to say this has been the most fun little people Christmas yet. It is true what people say, Christmas is better through the eyes of a child. 

From our family to yours we wish you the merriest of Christmases and a Happy New Year too!

The people walking in darkness have seen a great light; on those living in the land of deep darkness a light has dawned.

Isaiah 9:2

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. 

A Year Later

This time of year has new meaning for me since the birth of Hannah. 

You see today marks one year since Hannah was diagnosed with hearing loss. It was one year ago today that I took my 2 month old to the audiologist, prayed she wouldn't cry too much and fall asleep for the test. 

I never expected the results I got. 

After what seemed like forever and a lot of little lines on a screen, the doctor, sweet Dr. Moats, turned to me, put her hand on my knee and told me Hannah had hearing loss. She just sat there so I could take it in. 

We had started the day thinking everything was fine, no problems, just normal newborn stuff. 

We ended the day with a new reality that would define Hannah for the rest of her life.  

If we wanted Hannah to speak normally and hear she would have to wear some sort of device for the rest of her life. 

You see, since we thought there was nothing wrong with Hannah and this hearing test was just to make sure of that, Keith didn't come with us. 

I called him shortly after she was diagnosed, put him on speakerphone and he asked all the questions, thank the Lord for that, because I was speechless. 

We left that day with hearing aids ordered, a list of doctors to contact and Dr. Moats telling me of a virus, that was very rare, that started with a 'C', that she was going to call Hannah's pediatrician about. 

That was all I could remember from this day a year ago. 

As Thanksgiving approached we learned much more about that 'C' virus that she did indeed have. 

Yes, the Thanksgiving season has forever changed for me. 

It has shown me that everything in life has meaning. Not just every person but every circumstance. Hannah's hearing loss and other issues are meaningful and will be used for God's glory somewhere along the journey in this life or in the life to come. 

"For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but  at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."

2 Corinthians 4:17-18

Happy Hallo-week!

I must say this year has been the best yet for dress-up, trick or treating and make believe. 

About a month ago Eli decided he wanted to be Po, the Kung Fu panda for Halloween. Since the movie hasn't been out in a few years there is zero out costume-wise. So, I started thinking maybe E would want to be a dragon since Po is the "dragon warrior ". Haha. 

He was an adorable dragon and even won "scariest" in the 1-3 yo category at our neighborhood's party. 

Honestly, I don't think the completion was very fierce, but we were all still excited. 

The next day we broke down and bought a panda costume and added shorts for the kung fu effect. 

Also adorable. And believe me I am packing up all these costumes. Hannah can be a panda in a couple of years too. 

Since Eli was Po he decided Hannah should be Tigris (Po's friend and tiger on the movie). Sweet, huh?

Hannah, in her go-with-the-flow manner adapted to the tiger costume with ease. 

Her costume was a lot easier to find. 

We even got our picture with Olaf at Boo at the zoo. 

Fun at the onset, very scary as we got closer and Eli said "he's big!" And stopped moving. 

Another thing that made Hallo-week fun was Mawmaw coming to town! She initially came because we had lots of appointments and Keith was going out of town but it was fun that it coincided with Halloween. 

Her visits bless me because both kids warm up to her quickly, especially Eli. He could probably play with her all day if she didn't get tired. It's fun to watch. 

Sweet skeleton Hannah. 

On Halloween night Eli decided he wanted to be Po (it is always a discussion since there are 2 to choose from) and I dressed Hannah as a giraffe (Eli's 1st Halloween costume) because it was warmer. 

Trick or treating was fun but handing out candy was a blast. Eli had so much fun seeing other kids costumes and giving them candy. He even got to stay up late. 

Having kids has its ups and downs, sometimes by the minute, but Halloween is completely an "up". I love this season and love my cute characters. 

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

A Morning at Home

The weather has said rain for today all week so I planned on staying in.

We don't get many of these days anymore, even at the ages of my kids. There is usually school, therapy, a doctors appointment, grocery shopping or just the need to get out of the house. 

But today was different. 

And refreshing. 

We started the day watching Curious George's Halloween special, decorated the front door, made a paper pumpkin, played games and danced around the living room. 

I'm thankful for these days. Even though reminders to "listen" and "don't lay on your sister" still had to be said, it's fun not to have a schedule and just enjoy my kiddos. 

Here's a pic of our spooky door

And Eli's pumpkin too. 

Thankful for an "off" day to spend with these two. 

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

"Whoever has ears, let them hear!"

This verse has new meaning to me since Hannah was diagnosed with hearing loss. 

I have questioned why the Lord even gave her ears if she couldn't use them. Through her hearing journey I have learned much more about how people actually hear and that it has a lot to do with brain, not the actual ears, but she has ears. 

Also, do you know how many kids books and songs have to do with ears?  Anyway, that's for another post. 

I have wondered if Hannah would talk and if she did talk would it be understandable? I've started teaching her a few signs but I really want her to be an oral learner. 

Back in May she did start babbling which was huge. She was actually right on target with typical hearing kids and I got really excited. Her teacher was excited too but told me that many deaf children actually do babble but then it tapers off at about 10-12 months. So, I was waiting for that to happen. 

All I have to say is Hannah is not tapering off. She actually is getting louder and wants to get her point across. She'll sit there with her finger in the air jabbering about something really important. And yesterday she actually said "uh-oh". 

What? 

A word? 

So exciting. 

I am so thankful her hearing aids are enough for her right now. 

This isn't to say we are not pursuing cochlear implants, we are. We actually are meeting with a surgeon in town next week and meeting with a team of doctors in Cincinnati next month. In my (non-professional) opinion I don't think they'll want to move forward with CI's at this point but at least we'll have a foot in the door with doctors if and when they are needed. 

In the meantime I'm soaking in all the "uh-ohs" and anything else she wants to jabber at me. 

"Whoever has ears, let them hear."

Matthew 11:15

Hannah-banana

Our sweet, sweet girl turned one!

Hannah,

You laughed. 

You smiled. 

You played. 

You smashed. 

You continue to amaze me with your eye contact and curiosity. 

Your subtle ways of getting your opinion across. 

The way you light up the room just by entering. 

Your smile. 

Something that will always put me in a better mood or change my perspective on any situation. 

Today it was fun to celebrate you. 

To thank God for you. 

To look back and be encouraged by all we've seen you do this year.

Rolling over, using your left hand, babbling, eating solids, sitting up, shaking your head, connecting with our hearts. 

Hannah,

This first year of your life has been rough at times, not always fun and stained with grief. You have caused me to pray more, seek more, hope more and cherish life more. You have helped me notice others and realize that I really don't know what another person is going through. A kind word or a door held might be the nicest gesture they've received that day. 

You've given me strength to speak up, question doctors and learn from therapists all for the sake of helping you improve. I've learned to rejoice over small improvements and see these things as proof that the Lord hears and is helping you. 

You've caused me to walk slower. To not hurry through my day, but take the time to sit and rock you to sleep if that's what you need. 

Sweet girl, I know I have a long way to go to be the mama who is a pro at all that life throws at you, but I will willingly stand up for you and learn new things for your sake. I know God is making you into the daughter He wants you to be and I must hold you with an open hand as I participate on your journey. 

Dear one, I wish things were different and life wasn't so hard, but this is what we must endure until Christ takes us to Heaven. There He will make all things new, including your body, but we must wait. Thank you for being an example of patience. 

I look forward to what the Lord has planned for year 2!

With all my heart,

Mama

Here's a video in celebration of Hannah's 1st year!

Thank you to all of you who pray for Hannah and our family.  

We know those prayers have held us this year and will continue to encourage us in the next.  

Sickies

With both of my children, their first colds have been doozies. When Eli was 10 months old he got a bad cold that was accompanied by congestion that went into his chest and resulted in RSV. We had to give him breathing treatments and sit him up at night. I remember thinking "it can't get much worse than this". 

He did recover and thankfully has not had RSV again. 

Well, last Friday Hannah also came down with a fever and, like Eli, had a pretty pitiful weekend. 

She had congestion, fever, sore throat, the works. No one was getting much sleep around here. 

As of today, a full week after her symptoms started, she is doing a lot better and just has a nagging cough. 

I guess everyone has to endure their first cold or sickness, but this mama hopes it goes away and doesn't come back for a long time. 

Sweet Hannah falling asleep on the floor, evidence that she's sick because she rarely falls asleep anywhere without being persuaded. 

Well, with the fever gone and her (& all of our) spirits lifted, bring on the celebrating. Hannah turns 1 on Monday...whaaat? I know, I'm just as floored as you are. 

"Weeping may last through the night, but joy comes with the morning."

Psalm 30:5

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.