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. 

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 4 Year Old!

Hannah turned 4 a few days ago. 

A couple days before her birthday we had her evaluated at a center for developmental disabilities. 

Not the best thing to do right before a birthday. 

Overall Hannah did most of what she was asked, but it was hard. It was hard seeing her get frustrated because she didn’t want to be there and couldn’t verbally explain that. It was hard seeing some therapists at a loss for how to help her. It was hard leaving and not feeling like we had any next steps. 

Looking back I can explain all of her actions away. Such as the room was very boring, there were no toys, four adults were trying to engage her, only one of which she knew. Yes, this may be hard for any 4 year old, but it was my kid being analyzed and studied that day. 

As Hannah gets older her delays are more clearly seen. Especially in the company of peers. We pray that one day things will click with communication and somehow that may solve a large amount of her frustration, but it may not. 

I don’t have to figure all these things out today, but I do have to remember where my hope lies. In a God who created and knew Hannah’s life before she was known to us. That her days, like all of ours, are numbered and planned out before one of them came to be. 

Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

Psalm 139:16

Knowing this truth helps me as time continues to pass quickly. 

Even though we see her progression as baby steps she is doing well and growing/maturing in her own time. 

On her birthday I brought cupcakes to school which she loved. Her class and teachers have been such an encouragement to our family. Hannah feels at home there and is thriving. So it was fun to celebrate with her friends. 

The next day she started therapeutic riding and was immediately in love. 

She has loved horses for a while now, but this was the first time she every rode a large horse. So fun!

We hope to start doing this once a week. Beyond her just loving horses it has many therapeutic benefits. 

It helps to strengthen Hannah’s core muscles, which are still rather weak, it helps with her walking and her gait, as her gait aligns with the gait of the horse as she rides. We are thankful for this resource, be it pricey, and that she loves going. This is huge!

I am thankful that the Lord shows me joy in the little things and that He knows the next steps. Please continue to be in prayer for our family. 

What Summertime Brings...

Summertime has gone by...fast. 

As I look back over the weeks I feel like I was just planning camps, VBS and vacations and now they’ve almost all come and gone. 

I love summer because it comes without a schedule,  for a long time. When I am rushing around getting everyone where they need to be I feel like a part of me is lost and I turn into a bus driver. So, Hannah’s schedule has thrown a few wrenches into how our family operates.  We decided to send her to a full day hearing impaired school that is 30 minutes away back in the winter. Even though I knew this would take a lot of extra effort (and driving) I was, and still am, hopeful of the progress we will see in her language by going to this school. 

A few weeks before her previous school ended I talked with her teacher and she mentioned the new school having a year-round schedule. Wrench #1. 

So, Even though Hannah and Eli are both attending a public school they have 2 different schedules. The year-round schedule has the students in class 9 weeks off 3 weeks, year round. The traditional schedule (Eli’s) has him in school from September to June with a long summer break. As I am not opposed to the year-round option I wish both children were on the same schedule. But, I keep telling myself it’s only for 2 years, while Hannah is in preschool and then she should return to the traditional schedule. 🤞Hannah starts school August 1st. 

Another thing that was added is Hannah having her first round of Botox treatments. Wrench #2. Botox is used for people who have tight and/or weak muscles. It helps them become more flexible (for a limited amount of time) to help with walking better, etc. So, Hannah had this procedure on Monday and now will start intensive Physical therapy for the next 12 weeks. 

All I can say, thank the Lord my family is close, because I could not do this without my mom. 

As Keith mentioned last night, so much with Hannah’s care is a guessing game. We hope and pray that we are making the right decisions but sometimes you just have to go with your gut, and Keith’s seems to be more accurate than mine. 

We know the Lord has brought us this far and he is where our wisdom and help come from. (1 Samuel 7: 3-12). 

One other thing that made our summer even more special was Suzi’s 2nd birthday. Have I mentioned I love summer birthdays? We had a “water party” with neighbors complete with cupcakes and watermelon. So perfect for a second birthday. 

❤️

So we joined the church today...

One thing that helps me feel the most settled in a place is having a church family. 

People who you belong with and people who walk with you through life. 

We have been blessed with a church home that  welcomed us in, made a place for our children and challenge us daily. 

This is the smallest congregation we have ever been a part of, but a group of upright, down to earth and beautiful people. 

For all this we are so thankful the Lord led us here. 

So this morning we were presented in front of the church as members. On the way to church we decided to only have Eli come up on stage with us and leave the girls in children’s church. 

A very good idea. 

While we were worshipping I started thinking how nice it would be to have our entire family up on stage. For us all to join the church together. So during the last song I went down and got the girls out of class. They came willingly but when we got to the auditorium they went crazy. No lie. 

They did not want to sit in our laps, they wanted to run down the aisle. 

Once we finally got up on stage Hannah did fine, but Suzi just wanted to run. Yes, my sweet Suzi was kicking and screaming. We hurriedly made our commitment Keith and I switched children (he, my saint of a husband) had been dealing with Suzi while I held Hannah who was, for the most part, content. Eli was a rockstar. 

As we exited the stage there were sympathetic glances and words of encouragement but I’m sure my face was beet red. 

Wow, kids humble us, don’t they?  My kids bring me to my knees, or should, multiple times a day. 

Most people who came up to talk with me afterward said “we’ve all been there.”  While I know this is true, for some reason I thought by kid #3 it may get easier. But no. 

My kids not only made sure we were very memorable to the congregation, but that I keep my focus where it should be. 

On a God that gives abundant grace and meets me daily as I mother these three. I am still amazed that they have been entrusted to us and I get to witness their little lives. ❤️

These Are the Days

Spring break!

In a word...LOVE. 

Now that I have two kiddos in school this break was MUCH needed and a time I have thoroughly enjoyed. We didn’t travel anywhere but staying at home for a break was just perfect. 

Spring break means...

No packing lunches. 

No rushing around in the morning. 

No insisting little ones put on their shoes at least 5 times before we walk out the door. 

Taking time to eat breakfast. 

Spending time together. 

Going to the park. 

And it didn’t hurt that the weather was beautiful all week long!

I often hear from moms who are farther along on the journey say “you’ll miss these days when they’re gone”, and this post isn’t about that. But I am thankful that the Lord has allowed me to see how precious this time is with my kids. 

They still are most content when they are with their family and still want my attention on all things. 

I know they won’t always be like this. 

Easter Sunday at our new church. 

Only 3 of us made it since Hannah was under the weather, but a friend of Eli’s also came with his family which was an added blessing!

Pretty Suzi (in a dress made by her GiGi) and her new “cheeeeeese” face. Her personality is just blooming. 

And Hannah. Thriving with her new ear and learning more everyday. We are still waiting for more clear language, but her listening and response time has increased in the short time since activation. 

As this break comes to and end I am excited about the next few weeks of school and realize

summer is coming and there are many more memories to be made!

One of them being tee ball. 

Yes, this will be what our evenings look like for the next few months. 

❤️ ❤️ ❤️