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. 

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

She's Two!

Our sweet Hannah is TWO!

It's hard to believe all she's been through in her 2 short years, but through God's grace, she has come through like a champ. 

I've never been one to put all my children's milestones out there for everyone to see, and since Hannah is delayed I had to fight hard not to compare her to other kiddos, but she's walking now and we are so excited. 

I just can't get enough of it!

Another awesome birthday present is her surgery was approved and is scheduled for November 7th!! 

I've been on the phone all day scheduling and rescheduling everything that comes with her cochlear implant surgery, but it will be worth it because my baby is going to hear!  

I'm sure as the date gets closer I will learn more about all the ins and outs of CIs and have more specific requests, but today, right now, would you pray that Hannah would be healthy on November 7th and able to have the surgery? If she even has a runny nose that could delay it and we really want it done before the holidays and the end of the year. 

Thanks so much for loving us and our little girl. It means more than you know that so many people pray for her and cheer her on. We are very blessed!

I'll post more later on her birthday celebration. 🎂

And it begins...

After a week of tests, evaluations and discussions the conclusion is to implant Hannah's left ear. This wasn't a huge shock to us and we are thankful everyone involved is basically on the same page, but the unknown is still scary. Especially having the surgery 1.5 hrs from home and everything that entails. 

We are taking everything one step at a time. First of all insurance has to approve the surgery, that can take 3-6 weeks. After it is approved we have to get on the surgery schedule. Best case scenario is 8 weeks, worst case is December. 😁

The reason we are starting with just one ear is because Hannah's left ear has always been her worst and since she has other issues, not just hearing loss, the doctor wants to make sure this is a mechanical issue and not a neurological one. So, doing one ear, then giving Hannah some time to show us what she can hear and do will give us information for a possible right ear implant in the future. 

So Keith and I have been reading up on manufacturers and think we have landed on one (it's a big decision choosing something that will go in your girl's head!)

Of course we want to commit this whole process to the Lord. We do think that He is leading us in this direction but would you pray for a few other things?

Please pray insurance approval would come quickly so that the appointment will be scheduled soon. 

Pray that the surgery would happen at just the right time for everyone involved. (Our family, family that may come in to help out, the doctor, etc). 

Please pray that this surgery will help Hannah hear better and begin to speak. 

There are many other specific requests that will come as the process unfolds and I'll share them with you then. 

Thanks for walking through this with us. It is a huge decision that can make a life-changing difference. 

Commit to the LORD whatever you do, and he will establish your plans.

Proverbs 16:3

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

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. 

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

"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. 

Let's Go Swimming

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

Just us. No big brothers. 

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

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

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

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

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

All in due time. 

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

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

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

Psalm 37:23

Brave

She was brave. 

But I think she felt tricked. 

My heart probably hurt more than hers, but we both made it through. 

After the evaluation the doctor noticed her tongue was tight as well and that was probably the reason for her gagging on some chunky foods. So, 2 cuts. 

She will now have to learn how to use her tongue and lip in new ways. This will mean a little more therapy and stretching, but we do pray that this procedure will make a great difference. 

She's now napping and all is well. 

Thanks for your continued prayers. 

We are ready for the weekend!

"Weeping may last through the night, 

but joy comes with the morning."

Psalm 30:5

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. 

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

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

Hannah Update

Thanks everyone for praying for Hannah and her neurology appointment. It did not go as well as we prayed for. It was not all bad but there was not a lot of hope that the doctor gave us for things to be normal. He told us that there was a good chance she would develop epilepsy. In fact a 70% chance she will have some degree of epileptic seizures. He stated even though she has developed correctly so far we will see delays. How severe he couldn't say. As I rewind the conversation in my head I notice he continually chose not to say hopeful things. Basically, he compared her brain damage to a scar that would never heal. How bad that damage is may take years to reveal, but don't expect normal. 

This information is what I'd read on the internet, but I just long for normal. We purposely prayed daily during Ellie's pregnancy for a normal, healthy baby.  This is not normal though, and I am just sad. I think about my loss and I feel guilty because Hannah's loss is greater.  It seems there are too many thoughts to take captive right now.  Based on her brain the doctor believes that Hannah acquired the virus in late second to third trimester. He said it was acquired randomly somewhere in Louisville. Ellie and I were already struggling with our move to Louisville because of the great community we had in Austin.  Now it is hard not to say:  "If I wouldn't have moved my family to Louisville everything would be normal". "Did I miss something?" "Did I manipulate this move and not listen to the Lord?" "Am I Jonah or Job in this story?" I know that even if we were not meant to be in Louisville it does not matter. I know that looking back is not what God wants. 

For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11

I also see where I put my hope. My hope right now is in "normal" whatever that is. Ellie sent me a blog yesterday here . It spoke to us and the writer, who just discovered her husband had cancer, went through this verse “Blessed is the man who trusts in the Lord, whose trust is the Lord. He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit.” (‭Jeremiah‬ ‭17‬:‭7-8‬ ESV). We feel the heat and my trust is wavering. I seek out and pray for this trust as the drought is here.  I pray that our trust and hope is in the Lord not "normal". 

The verses for the day on the blog were some verses I have been praying through. 

Psalm 46:1, “God is our refuge and strength, an ever-present help in trouble.” (NIV)
Psalm 118:14a, “The LORD is my strength and my song.” (ESV)

Please pray, as Ellie and I don't feel very strong right now.  Pray that we would feel His strength.