And This.

Recently, Hannah has started eating more and more solid foods and since she won't take a bottle, I've upped her food intake because I don't think she's getting enough milk.

Since this is typical with lots of kids we just thought it was Hannah. 

Well, today we visited a feeding therapist and she noticed Hannah has an upper lip tie. This may be preventing her from feeding from a bottle and ultimately getting enough food. Down the road it could make it harder for her to make certain sounds, eat properly and she would more than likely have a gap between her front teeth. 

So, we have an appointment Thursday at 10am for an evaluation and possibly a cut. 

I'm praying that this will make difference. 

I'm praying this won't be too traumatic for her (or me). 

Hannah is already SO tired of being poked and prodded, she seems to tense up with every new specialist that comes her way. Poor thing. 

As I've said before, this is just another example of laying her life in The Lord's hands. 

It is Well--Bethel Music

"Grander earth has quaked before

Moved by the sound of His voice

Seas that are shaken and stirred

Can be calmed and broken for my regard

Through it all, through it all

My eyes are on You

Through it all, through it all

It is well

Through it all, through it all

My eyes are on You

It is well with me

Far be it from me to not believe

Even when my eyes can't see

And this mountain that's in front of me

Will be thrown into the midst of the sea

Through it all, through it all

My eyes are on You

Through it all, through it all

It is well

So let go my soul and trust in Him

The waves and wind still know His name"

It is well with me. 

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. 

Potty Training

Now, let me start off the post by saying, No, Eli is not potty trained. We're still in process. And even though all you seasoned Moms say 'they won't go to kindergarten in diapers' I'm starting to wonder.

I know, I should have started earlier, but I did have another child. With colic. And other issues. Who only wanted to be held, etc, etc. 

I feel like we're finally getting into a routine (wait, did I say that out loud?) and with summer coming it's time to really dig our heels in and master this thing. 

If only Eli would get on the same page.

I keep wondering what potty training is doing for our relationship.  (Eli's and mine).

Will this bond us any closer?
Will it give me more patience with him?
Funny antidotes to share with other mom friends?

I'm not sure what will come out of it, more than my child will be allowed to enter school (in a couple of years), but as with everything else it is another sign that he's growing up.

I'm trying to linger longer on the phases of his childhood.

In 5 or 10 years I am sure we will have moved on to more complex worries and stresses and thinking back on the days when he wanted me to sing "just one more song" at bedtime will be long gone.

He is a sweet, caring, sensitive and strong-willed 3 year old.

He keeps me on my toes that's for sure.  And even though sometimes he can elevate my heart rate higher than is probably normal, I am so thankful for this life.

Thankful for the opportunity to be his Mama and thankful that my house is loud, messy and well lived in.

So, someday (hopefully not in the too distant future) he will be potty trained and able to walk beside me without running off and I will fondly look back on these hard days.

"Every good and Perfect gift is from above.
coming down from the Father of lights,
who does not change like shifting shadows."
James 1:17

Music to My Ears

As a 'new' Mama of a deaf or hard of hearing (HOH) child I seem to learn something new every week.

Such as...

Changing and cleaning hearing aids and molds

Pointing out and talking about everything in sight (yes, I'm the lady at the grocery store who looks like she's talking to herself, while Hannah looks the other way). 

And making all sorts of sounds to see if Hannah can hear them. 

I have learned that while a regular hearing baby learns sounds and words passively, a HOH child needs to learn them directly. So I must be much more intentional when speaking to Hannah. 

I know kids don't speak at 8 months, but lots of verbal processes are already in the works. 

Well, Monday this Mama was rewarded by hearing her start babbling!!

Right now it's a lot of babababa and wawawawa. Music to my ears! 

Before Monday she did make noises, but nothing that showed us she was distinguishing sounds, just a lot of long or short (kind of yelling) sounds. 

We are rejoicing that even with her limited hearing she is learning and that her brain is hearing too! 

I'm video (posting) impaired so I can't leave you with proof, but I'll post a cute pic. 

"The LORD your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing."

Zephaniah 3:17

Eye Update

Well, by last Friday I finally remembered to cover each eye once to test Hannah's vision. From my (non-professional) opinion she does not seem to preference an eye, hallelujah.

I made her grab for toys, put things on the opposite side to see if she saw them and a few more tricks and everything seems normal. She didn't really fuss until about an hour in and I think that was a combo of the still-present witching hour and her just wanting it off her eye. 

She looks pretty happy to me!

Thanks for praying for our girl so consistently. She has 1 more month of her anti-viral medicine and I am ready for it to be over. 

She takes it no problem, but I do think it makes her a little hyper, especially at night.  So, I'm hoping her sleep improves when she goes off the medicine. 

We have seen lots of improvement during PT the last 2 weeks. She is gaining core strength and is almost able to sit unassisted. Right now she can sit for a few seconds and then usually face plants. 

How many pillows can one girl use?

Her left hand is working a little better too. Her hand is still fisted (loosely) most of the time, but if I help her she will open her hand and play with toys. This is a huge improvement!

Look at that left hand! Woo hoo!

The professionals say it's hard for her to lift her arm, open her hand and play with the toy all at the same time. I guess you could say it's a brain-thing. So, by us helping her we are training her brain to do these things at the same time. Isn't that pretty amazing??  I guess it's like anything else we learn, or teach our brain to do, but in Hannah's case it doesn't come naturally. 

Her right side seems to be completely normal. She grabs everything in sight with that hand!

Hannah is such a fun-loving little girl. She is definitely my smiley child. She is living up to her middle name--Joy. I pray that she will exude joy wherever she goes.

"You will make known to me the path of life; In Your presence is fullness of JOY; In Your right hand there are pleasures forever."

Psalm 16:11

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