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. 

❤️

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. 

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

Trudging along through Winter

Even though winter didn't officially start until after Christmas this year (remember it being 70 degrees that day?) it still seems long. 

Since early fall Eli has been enrolled in gymnastics and I think all of his effort is paying off. He really likes it and practices all the time. He rolls, sets up things around the house to jump over and is getting more daring with climbing and jumping off things.

We've also started going to an open gym at a nearby facility once a week. This is fun for the 3 of us, including Hannah. She loves to be bounced on the trampolines, "jump" in the foam pit and of course roll all over the place. I think it's just as helpful for her as it is for Eli. 

Over the past few weeks she has gotten a lot more brave. She is now pulling up and cruising the furniture. She still wants to move like Eli does, but she's just not there yet. 

I've always said she's my risky one and this past week she proved it. She lunged forward onto her water bottle and chipped her front tooth. Yes, bad mama moment, but it seems like no nerve is exposed and she's not bothered by it. In 6 months the dentist will either file it down or fill it in. 

     Yes, neither of our finest moments. 

Even though her progression seems slow, to me, it is good for me to look over the last month and see how far she's come. (The slowness is probably why I haven't felt there was anything to "update" on the blog). But, it gives me hope and helps me to see why all these therapies we participate in weekly are worth it. 

Here are a few more pictures of fun happenings over the past few weeks. 

Keith's birthday on February 13th. 

    A fun (and fancy) Valentine's Day ❤️

And some more sweet pics of the kiddos

So as we trudge along, we have hope. Hope for warmer weather days and times when both of my children will run around the backyard. 

All in due time. 

Trying Hard

Hannah has always been the worst most challenging sleeper in our household. Since the day we brought her home she hasn't wanted to sleep. She went down to 1 nap/day at 11 months and when she was around a year old she finally slept through the night (after much trying) but at times it's still touch and go.

I always heard stories that kids don't sleep well when they are learning a new physical skill. I guess Eli went through this, maybe, for a couple of hours 1 night a long, long time ago.  So yeah, I don't really remember. 

Since Hannah is approaching 16 months and delayed physically I kind of thought we skipped the sleeping issues due to skill learning. Wrong. Last night she woke sitting in her bed, trying to pull up on the railing and very awake. Yes, the bed will be lowered before bedtime tonight. 

I'm really so proud of her and she's proud of herself. She is the child that really wants to move, she wants to get up, see, follow the big kids, etc.  But many times her body will not allow it. 

We still have to put her in the infant room at church because she's not walking, which she hates, and I get called out about every other week because she's so unhappy. One week I went back and they had her in a swing, so yes she has graduated from the infant room, but there's just no other place to put her. 

Her major mode of transportation is rolling right now and she has perfected it to a tee. She will roll from the living room to the kitchen, down the hall, into her room, Eli's room and everywhere else. And she's gotten really, really fast. Of course she doesn't realize that it would be faster and easier if she crawled, but her left side just won't allow it. We have been told once she's walking we can do things to help strengthen that left hand and arm, but at this time crawling just isn't happening. Her brain cannot figure it out. So, she rolls. 

I'm sure I will look back on the rolling days with fondness in the not so distant future, but now I just want it to be easier for her. I guess that will never change. 

Whatever you do, 

work at it with all your heart, 

as working for the Lord.  

Colossians 3:23

Don't Worry About Tomorrow

A few months ago I was checking out at the grocery store alone, a rare occurrence. As I moved to the front of the line I noticed the clerk checking people out was only using one hand to scan every item and put them in bags. At first I thought she did not have a right hand, but as I got closer I noticed her right hand was just down by her side, lifeless, like she didn't even know it was there. 

I really wanted to ask her why she couldn't use that hand, what had happened to her hand, but in the 30 seconds I stood there before her I could not figure out an appropriate way to ask without coming across insensitive. Also, I didn't have Hannah with me, who usually helps me to start those types of conversations. 

A few months ago we knew Hannah had trauma to the right side of her brain because of the CMV, every doctor and therapist told us this would lead to left side weakness but we really didn't know what that would look like down the road. 

When I saw the clerk in Kroger I got a glimpse of what could be. 

I started to worry. 

Now that Hannah is moving more we can see how much she favors her right hand and how hard it seems to be to move her left. 

It's hard to pull up with one hand that's stronger than the other. It's harder to crawl, it's harder to eat. 

For the most part Hannah is adapting. I am amazed at what she can do with that right hand, but we want her to use her left too. 

And we don't want it to be so hard. 

There are days when she puts things in that hand, brings the left to a toy, claps, and more. But at other times it seems like she is totally disregarding it. 

As I understand it, using her left hand doesn't make sense in her brain. Even if she was older and could understand me telling her to move it she could not do it. 

That's why she's in therapy. 

That's why it's important to start early and work with her hand often. 

I wonder if the clerk at Kroger had therapy or the chance to use her hand?

It's hard not to constantly wonder what the future will look like for Hannah. What she will do, how she will be looked at by others. 

That's why I entitled this post "Don't worry about tomorrow" because I know God has given me enough strength, love, grace for today. That's where my mind needs to be. That's where I need to place my trust. That God has this. That he has Hannah in His hand. 

Would you pray that our family will focus on today and not what may happen tomorrow? Believing God is full of grace for the unknown. 

Also, will you pray Hannah will be able to crawl?  We've learned that pushing up to a crawling position can significantly increase the strength of her left arm. 

We know this is possible, but it's hard. 

Thank you. 

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

Matthew 6:34

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