Making the Most of It: Hannah Update

Thank you everyone for praying for our girl (and us) last week. Hannah did amazing at both doctors appointments. I was told by more than one nurse that she is a sweet little angel, which I totally agree with, but she does seem to be on her best behavior when she's out of the house :). I think she takes after her brother in that regard.

Thursday, she had her sedated hearing test. Even though I had to wake her at 4am to feed her a last meal before the 9am procedure she had a good attitude.

She fell asleep easily but woke up in the middle so they had to put an IV in. It took her a little longer to wake up at the end, but that was the only hiccup. 

      Waiting for the doctor to show up.

When they brought her back to me.     (So sweet).

The results of the test are that Hannah's hearing is the same in her right ear, but her left ear has declined. We will get stronger aids for her in a couple of weeks. I was sad when I heard her hearing is getting worse, but am encouraged that the aids are helping and during speech therapy (and other times) she really is hearing sounds!!

Friday, we loaded up the minivan at 6am and headed to Cincinnati. 

All I can say is WOW about this hospital. We hardly waited at all, the doctor spent more than ample time with us and everyone we came in contact with was great. 

The doctor taught us a lot more about Hannah's MRI, that speech therapy is  most important right now, what exactly "having a small head" means and more little nuggets that are too hard to explain. We felt encouraged when we left and this doctor will follow Hannah. 

As I've said before there are no outward signs (except for her head & hearing aids) that she is (or will be) behind but we want to be proactive with therapy and seeing the best doctors we can find. She actually rolled over yesterday which is huge y'all!

                     At the doctor

           Eli running off some energy 

After Friday's appointment we traveled back to Louisville via southwest Virginia. That's where my g'ma lives and since she hasn't had a chance to meet Hannah yet we wanted to go see her. Yes, southwest VA is really not on the way from Cincinnati, so that meant A LOT of time in the car but our kids did great. We got back home around dinner Saturday night. 

                     4 generations

             This little girl IS ticklish!

Eli & daddy taking a dip in the hotel pool while it snowed outside. What a treat!

It was a whirlwind of a weekend, but filled with good family time. 

"Give thanks to the LORD, 

for he is good. 

His love endures forever. "

Psalm 136:1

Being Present

As I have said before, this virus is evil. At this point in the game there is no way to know how Hannah will develop, what she will/won't do and how long things will take. If I think about all the unknowns for too long they drive me crazy.

I think this can apply to anything in life. There are so many unknowns, aren't there? 

Lately, The Lord has really been impressing on my heart to "be present".  Be present in what's happening today. Today, Hannah's doing what any other 4 month old should do, today she's smiling, laughing, rolling and napping (praise Jesus!) 

I don't want to miss these precious times with my family because I'm worrying about what may happen tomorrow. Of course this is easier said then done most days, but I think The Lord has me on the road to learning more about how He cares for his children and how he really does give us what we need when we need it. 

This week has been an off week for us. No doctors appointments and no PT. Next week, however, they start back. The two biggies are next Thursday and Friday. Thursday Hannah will have a sedated hearing test to see if her hearing loss has gotten worse. This should be a semi-easy procedure, bringing home a sleepy baby. I've been praying from the beginning that her hearing won't decline, just because I don't want anything to get worse, but either way at least we'll know where we are. If it does decline she'll have to get bigger/stronger hearing aids. Friday, we'll travel to Cincinnati for a 2nd opinion with a neurologist. This doctor is highly recommended. We pray he can point us in the right direction. 

Since I'm on the topic of "being present" I wanted to share some Eli-isms and things I hope I never forget. 

The day friends arrived at our house and Eli ran over to Hannah (who was lying on the playmat) and whispered "friends, friends are here, Hannah!"

Eli calls the living room "the room room" (I kinda don't want to correct that)

Eli calls Hannah, Banana. 

The look of sadness on Eli's face when the audiologist stuck something in Hannah's ear & it made her cry. 

Eli now requests we sing "jingle bells" & "silent night" before bed. I wonder if I will still be singing it in July?

Eli's favorite cereals are flakes and O's. 

Lord, thank you for my children. They truly are a gift from you!

God is our refuge and strength,

 A very present help in trouble.

Psalm 46:1

Christmas 2014

Like everyone else it's hard to believe Christmas is over. The holidays have come to a close, kids go back to school this week and Keith's work ramps up again. That also means Hannah's doctors appointments start again as well as PT. 

Honestly, I'm a little glad to start up appointments again. I did enjoy not having constant things that kept us in the car & in waiting rooms, but these last few days I have started to give into worry a whole lot. Questioning every little thing Hannah does, wondering if it's normal or brain-related. When we see doctors and therapists they seem to keep these worries at bay. 

For the most part Hannah is doing exactly what a soon-to-be 4 month old should be doing.  We are trying to celebrate every little thing, but then worry comes back. The what ifs and the second guessing. 

I know I can't live there. Hannah is who she is. God knows her future, not me. This is something I repeat to myself daily, sometimes hourly. 

Back to Christmas... It was great. Keith's parents came and spent time with us which was a blessing and this is the first time in our married life we've spent Christmas in our home. It was different. As you can imagine I was a little consumed by CMV at times and thinking about what our life was like last Christmas. What would it look like next Christmas? 

I'm so thankful for Hannah. She makes me smile so much and gives me joy. I love that she's in our family, I just hate the virus. 

Here are a few more shots from Christmas. 

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

Matthew 6:34

We're Okay

Thank you everyone for your outpouring of love, support and prayers. It means so much to us to read your comments and really be carried daily by your prayers. 

We are going through something no one should have to endure. Child-sickness is horrible to hear about, but when it's your child it takes over your whole being.  We wake up and go to sleep thinking about it. And every time we look at sweet Hannah. 

...so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again.   1 Thessalonians 4:13-14

WE HAVE HOPE. We know who goes before us and we long for His return, maybe even more now than ever before. 

So as Hannah's first Christmas approaches we are thankful for all The Lord has given us and the hope of what's to come. It's more than I could have ever imagined and my heart is full even in the midst of hard news. 

              Merry Christmas to all!

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. 

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

from a mamas perspective

A week ago I knew very little about MRIs, hearing loss, infectious disease and especially CMV. We basically tested Hannah for CMV to rule it out, not find a diagnosis.

We've gone through every emotion from extreme saddness and fear to anger and hope. I have to say that Thanksgiving weekend was the longest weekend of my life. A doctor should never deliver this news on a Friday afternoon with little information and instructions to just "wait until Monday". Our minds went crazy. 

By the time Monday came I was actually glad to see Keith leave for work so we could stop talking about it. And of course with 2 little ones my mind went to feeding and playing cars and rocking to sleep and watching curious george. And when they would both nap. Fear crept in. 

I believe the only thing that is holding us up right now is the prayers of the saints. 

Honestly, Hannah has been a challenging baby from the start. I actually wrote an entire blog post about how bad colic is when she was about a month old (that I never published) which seems pointless now. We don't know and may never know if those symptoms were CMV related or just colic. So far every doctor thinks they are separate. 

I never wanted this blog to go here. I just wanted it to share about life. Kids growing up, holidays, first days of school but not grief and a sick child. But, maybe that's what The Lord wanted. This is all part of the broken world we live in. 

As I started out saying, you never know what you can handle until you have to. Sometimes I feel like I'm barely hanging on, but that's when I must cling to Christ. 

A wise friend told me "when you look into the future and think about "what may happen" or "worse case senarios" you are picturing a future without God." I don't know the plans for Hannah's life but I am blessed to be a part of the story and see how The Lord ordains every step. 

If you're still reading thanks for staying with me. I know this has been an array of thoughts but I wanted to write them down and share a little from my heart. 

Thank you for praying for our girl. With anti-viral medicine prescribed we now wait to see how it attacks the virus in her brain and ears over the next 6 months. We are trusting The Lord for complete healing but, as Keith said, we must hold health loosely and watch to see how The Lord writes Hannah's story.