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

Plugging along

This was Hannah (& I) last Thursday morning for her hearing test. 

We haven't had one of these since August and even though it's still the same test (for better or worse) Hannah has grown up a lot since then and it's getting harder. 

First of all it's just emotional. For Hannah, because she had to wake up early, go out in the cold, she doesn't want to sit on the bed and wait for the doctor, she wants to move around, get on the ground and more. Of course, since it's only 6:30am she forgets how tired she is and remembers how hungry she is so there's lots of bumps and tears and you get the picture. 

For me, it's also emotional. I think I've started tensing up when I pull into the hospital parking lot. I am tired of the silly questions about her delayed development and doctors and nurses who think they are pointing it out for the first time. Really? 

Since Hannah is getting older she is also more able to fight the sleep induced sedation and gets mad when we wake her up and force her to drink something so we can be discharged. 

So yes, just fun all around. 

The result is her hearing remains the same. Good news! Also, the doctor hopes to try a booth test next time instead of sedation. Even better news! Of course we will continue to monitor her speech and hearing. 

We have lots of professionals and professional parents keeping a pretty close check on Hannah. She is one of the sweetest children I know (not showing any bias here) and I am so thankful that she is part of our family. 

As she gets older her cries in pain, discomfort and confused looks hit me harder and make me get more defensive when doctors want to do yet another test.

But today we are well. 

The hospital is forgotten (by most of us) and we are anticipating the 1+ feet of snow predicted for this week. 

Thankful. 

"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

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. 

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

Innocence

It only took 7 months.

It only took 7 months for someone to ask me what was behind Hannah's ears. It came from an innocent child who was no more than 10. I was sitting at the IKEA snack bar with both children while Keith got us some ice cream before we piled in the car and drove 2 hours home. Hannah was smiling and laughing and the little girl noticed, commented about how cute she was and asked. 

I really don't mind being asked. 

I love to talk about Hannah and I loved explaining why Hannah wore hearing aids to this girl. 

What I wasn't expecting was the reaction (or non-reaction) of her father. 

The father never directly looked at me. He just sat there listening to his daughter and other children. He was expressionless and eventually told his daughter to stop asking me so many questions. About that time Keith came with the ice cream so we parted ways. 

I'm sure the father didn't know what to say and he was probably exhausted after enduring IKEA with his children, but the way he handled that situation kind of shocked me. 

It also made me sad. 

Is this what Hannah will face her whole life? People looking at her but not saying anything? Or worse, looking and making fun? I pray she will have the maturity and knowledge to know how to handle those situations. And so will I. 

I know life is hard and if Hannah doesn't get made fun of for wearing hearing aids it will be something else, but as her mama all I want to do is protect her. 

But then I remember to take it one day at a time. 

Right now I am her voice and I'm privileged to be. 

Right now I get to hold her a little longer and enjoy the baby that she is. 

For that I'm thankful. 

6 month challenge!

Can you see them? They are really tiny, but Hannah got her hearing aids Friday!

Here's a better picture (knocked out after our long day). Pretty pink for my girl.

It's SO much fun to hear my daddy's voice!

We've had quite a few adjustments over the last few days. Hannah has taken them like a champ, but she's tired. Hey, we're all tired!  But with the hearing aids (and mama constantly adjusting them) and anti-viral meds she's had a lot of change. 

She started the meds Friday afternoon and is getting the dose 2 times a day for 6 months. So far it's hard to tell if she has any side effects. She does seem to be a little more fussy, like her stomach hurts or something, but it's hard to tell. We are praying she will adjust and can calm down a little. 

A sweet friend of mine told me she and her kids will be praying for Hannah everyday for the next 6 months of her treatment. That really spoke to me and gave me the idea to extend that challenge to all of you. 

Will you pray for Hannah everyday?(today through June 7, 2015). Her 9 month birthday :). 

We believe The Lord can heal her brain and ears and prayer is what we need. 

Here are things you can pray (+ anything else you think of). 

1. Pray the anti-viral meds will completely erraticate the virus from her body. 

2. Pray her brain will heal and she will not have any long term side effects. 

3. Pray her hearing does not get any worse. 

and for us...

4. Please pray we will have hope and don't go to dark places of worry and fear about the unknown. 

Thanks to all of you who constantly tell me you are praying and have asked how you can help. We have felt carried by prayer. 

Tomorrow we see an ophthalmologist and hope to get in with a neurologist soon. It's a lot for this little life. 

Eli answered, "Go in peace, and may the God of Israel grant you what you have asked of him." 1 Samuel 1:17