Here we go…

This title can encompass so many things. 

A new year, a new school, a new start. I’m sure I’ve written about all of those, but this time it’s a new drug. 

As many of you know Hannah has been taking medicine to prevent seizures for over 18 months. While the med is helping breakthrough seizures (ones that happen during the day, and cause her to be unresponsive) she is still having seizures while sleeping. 

Small ones, 1-2 seconds in length. 

But, these small jolts to her brain are no good. 

They interrupt her sleep, cause her to not enter deep sleep and not store her memories. 

 Before Christmas Hannah was screened for a trial drug to help with this specific type of epilepsy. As of now there are no drugs that target these little nighttime jolts. 

Yesterday we were told she was accepted. 

Tomorrow we start the medicine. 

I’m anxious, I’m doing so many things around the house to keep myself occupied and Hannah is completely unaware. 

As always,  she will do what is asked tomorrow and we will pray that this medicine starts to heal her brain. 

Since this is a drug trial there is a 30% chance she will receive a placebo. 

Will you pray she receives the real drug? Right now, as you are reading this? 

I am thankful for this opportunity, for the medication and the doctors and the smile on my daughters face as I dropped her off this morning. I believe that God’s timing is perfect and trust this drug trial is part of that. 

God’s way is perfect. All the LORD’s promises prove true. He is a shield for all who look to him for protection. Psalm 18:30

Joy & Faith

I love this age with my girls. Suzi calls Hannah her best friend and Hannah grabs dress up clothes for Suzi to put on so they can play. ❤️

Both our girls have a fruit of the spirit as their middle name. Hannah Joy and Suzi Faith. After Suzi was born Keith said God knew we needed joy when Hannah was an infant and faith as we added a 3rd child to our family. As they grow I see these fruits multiply in their lives and wait with expectation at what God will do. 

The unknowns with Hannah’s seizures and which medicine will work best is still present but I am seeing more communication in her. As you all probably know she has speech apraxia + hearing loss = hard to communicate. But these past few weeks Hannah has been expressing more thoughts and words to me. Just today she looked outside after the rain stopped and said “rain stopped, the sun!” When I took the girls to the park this week she repeatedly said “thank you” for bringing me. She and I also try and take Jack the dog for a walk on Monday and Wednesday and she definitely tries to engage in conversation about birds and leaves and everything else a little girl talks about on a walk. 

I’m thankful for the goodness of God in the midst of hard times. 

Seasons Change

As much as I love fall and the cooler weather is brings it makes me sad when the days get shorter and summer is gone. I have been reflecting on the summer lately...The summer of COVID, the summer of virtual life, isolation, birthday parties, and of course when epilepsy entered our life. In a way it has seemed to mark time. I think back on the days when we didn’t give her 3+ medications a day with fondness, with ease, with innocence. 

Don’t get me wrong, Hannah is still Hannah. She still has her opinions and let’s you know what she thinks. She still likes to snuggle and hugs everyone and for all these things I am thankful. 

So far we have tried two medications. We are hopeful the second one will control the seizures but neurological medications make this mama nervous. One side effect of the med is dizziness which a girl with balance issues does not need but I am praying it will level out. We return in 3 weeks for a repeat EEG to see if anything with the mis-firings in her brain have changed. Actually, this is a take home EEG (which I hope has a battery pack), but I’m hopeful it will be more comfortable for everyone. 

I know life is so mixed up for everyone reading this. Our story is just one of millions who have been blindsided by life. Life is hard, life is not fair, and if I didn’t know the Lord I don’t know where I would be. I am continually in awe that the Lord loves me like he does and has a plan and an end that is good. Praise God this is not all there is, praise God eternity is real! Having Hannah has made me long for Heaven more. I pray if you are reading this that you will seek an eternity with him. 

“For God so loved the World (you & me) that he gave his only Son. That whosoever believes in him will not perish but have everlasting life”. John 3:16. 

This song has been on repeat in my head and brings tears to my eyes every time I hear it. I hope it blesses you too. 

“I push you away, still you won’t let go. You grow your roses on my barren soul” 

Who am I to be loved by you Lord?

Who Am I? By Needtobreathe

https://www.youtube.com/watch?v=AUdMMUUYXKs

Wake me up when it’s all over

Week one of online learning is over and let me tell you this mom is beat! 

I know, I know I need to relish all the at home time I’m getting with my kids. These days are fleeting and isn’t it a joy to stay home and teach, no make sure your child is learning?? 

Everything outside of me is saying “embrace it”, “grow closer to your kids through it” and more. 

That’s not happening here. 

My kids are once again at 3 different schools. Eli is homeschool hybrid, 2 days at school, 3 days homeschool. Suzi goes to preschool 3 mornings a week and Hannah is a public school virtual learner. Yes, my head is spinning. 

We decided to homeschool Eli this year, because online learning was tough on him (& me) in the spring. I switched Suzi’s days at preschool to coincide with Eli’s schedule and of course when this perfect schedule was made Hannah was planning to be an in-person kindergartener 5 days a week. Oh, that feels like such a far off dream right now. 

I really want to just go to sleep until the world goes back to normal. 

I won’t go into the details of virtual learning for a child with hearing impairment and other special needs, but it’s hard. On everyone. And way too long for her attention span. I have already spoken with her principal more this week than I ever did the last 2 years at her other school. So, they know us. 

Eli’s adjustment to homeschool is just that, an adjustment. It’s not the same, mom has never been my teacher before, and now she is. As much as I want him to learn, I also don’t want to strain our relationship, so we are taking it one day at a time. 

So, back to making this a good time for everyone. I know I can’t just go to sleep and there are little minds counting on me. This pandemic has brought many things into everyone’s life and schedule and for me this year is learning to teach my kids so they can learn. That is my prayer. 

So instead of dropping my 3rd off at preschool and having a leisurely walk through Target I will be learning. Learning how to motivate, learning how to have patience, learning how to teach. No, it will not be perfect everyday, but I know the Lord goes before me and we can do this. And 🤞🏻it doesn’t last the whole year. 

It’s Been A Week

First of all, THANK YOU for everyone who thought and prayed for us during Hannah’s stay in the hospital. She did so well and took everything in stride. She was literally “tied” to a bed by her hair and never once tried to run or get down or escape. It’s like she just knew what to do. 

So, we arrived around noon Monday, they hooked her up and the monitoring began. By mid-day Tuesday the doctors thought they knew the issue but wanted to observe her another night. There was never a seizure to capture, but there was lots of activity. What was determined, is Hannah has eses seizures. Her brain does not seem to settle or slow down at night which could be the cause of her sleep issues, focus issues, speech issues and so on. Again, left unchecked and unmedicated, could cause neuro-regression. Whew, yes that’s a lot. 

So she was discharged Wednesday having meds and a plan to repeat the EEG in a couple of months. 

Of course, being the guy he is, Keith has been researching since we heard the diagnosis and reaching out to others. If the medicine does indeed help the eses it could be huge for Hannah. 

Right now it’s a lot of wait and see and a lot of H adjusting to medication. Just in time for school to start, haha. 

We know that this was not accidentally found and the Lord has big plans for Hannah. We thank God that this was discovered at age 5. 

Please pray the medicine can be adjusted properly so that Hannah can handle it and it not only prevents seizures but controls the eses. 

Right now we are taking it day by day. 

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. 

Lamentations 3:22-23

Escape from Reality

Last week we hit the beach, and I have to say it was such a needed, perfectly timed, getaway. Yes, my kids were there 😆, no we didn’t go on a date night, but it was perfect. 

As with many of you, 2020 has been hard. Lots of sad endings to school, lots of time missing family and friends, summer camps getting cancelled and more. Having one week to escape our house and hang out at the beach (and a house with a pool) was the a gift from God. 

MawMaw and Poppy came too! 

We ate in every meal and only took short trips to the grocery store. The kids were thrilled to have two other people to play with besides their immediate family (even though Suzi and Hannah don’t portray it in this pic 😉). 

Lots of memories made last week. Hannah was healthy the whole time and the kids slept great. What else could we ask for? 

We did return to another scare from Hannah and because of this she will be admitted tomorrow 8/10 for a possible week long EEG. Even though I am not looking forward to it, I am thankful for her appointment being moved up and that we will get more answers about her seizures and what meds she should be taking. 

Thank you for your prayers for us this week and always! ❤️

A few more pics for memory's sake. 

A Puzzle

Who do I cling to?

From where does my help come?

My help comes from the Lord. 

Maker of Heaven and Earth. Ps 121

As many of you know Hannah has always been a puzzle to us. One of her early intervention speech therapists once described her like that, and even though it made me cringe a little, I think it defines her perfectly. As she grows older most of her decisions make sense to me once I figure out what she was thinking, but lots of times it’s like putting together a brain puzzle. 

One thing that a neurologist warned us about when she was 3 months old was the possibility of seizures. At that time, she had lots of other things going on so we just prayed that she would never have one and it would never be an issue. It’s actually a question I get every time we see a new doctor. And up until now I have always answered no. 

Well, it happened (see previous post) and even though I know many people have seizures and live fine lives with them I still did not want this for my daughter. I don’t like checking her every time she is lying quietly on the couch or feeling relieved when she comes into our room at 2am. 

Last week she had a routine EEG. Keith went with her and said she did very well. She sat the whole time and let them put tons and tons of probes all over her head. She was a rockstar, really. 

Going into this EEG we knew there would be abnormalities because her brain has been malformed since birth. But when a doctor schedules a telehealth visit at 9am on a Monday you know it’s not good news. Hannah’s seizure seems to have started some mis-firings on the right side of her brain. Left alone they could cause more damage. Medication is needed. We spent Monday waiting for her neurologist to call with an appointment which could possibly be the next day. 

After a lot of discussion between doctors it was decided that she could wait 3 weeks (insurance mandated wait period) for a follow up EEG. 

So we wait. 

This, unfortunately, is another piece of the Hannah puzzle. We pray that the right medication is easily (& quickly) found and that her hospital stay is as short as possible.