Wednesday, February 3, 2016

Quick February Update

Thought I'd just share a little of what's been going on with Haddie for those of you that want to know. She's doing pretty well these days. Still scooting when she crawls and she gets in that mood maybe 3 times a week. She's doing very well with her therapies and working her switch toys. She seems to be more alert than ever. We've lowered her seizure meds a little bit and she's reacted fine. We met with a dietician this past week and she felt Haddie was doing well. She's plateaued a bit so we need to increase her calories some but overall Had is eating and drinking well.

And that's about it really. It's so crazy to have a sense of normality considering how hectic the first year or so was. I was reminded of this when I was at Akron Children's hospital this past week. Haddie and I hopped in an elevator and a guy my age walked in as well. He looked beat. I asked him how he was and he said "so, so. We've been in and out since August". I knew what that meant. In the hospital, things get better, you get out and before you can get settled you're back in the hospital. I told him I'd been there and simply encouraged him to hold on and hang in there. I wish I could've said more before he got off the elevator.

People often ask why I don't update this more. The main reason is there isn't a ton to update. Haddie continues to impress us with her growing abilities and her funny personality. We are so blessed to have calm and uneventful days and months. We know full well that could change in an instant so we try not to take that for granted. But I am humbled that people still ask and ant to know. That tells me that Haddie has a special place in a lot of peoples hearts.

Thanks for your prayers and thoughts!

Thursday, December 10, 2015

Haddie- Cember Update

Hey Folks,

Thought we'd give you a quick update on Haddie since it's been a while. Hadassah has been doing pretty well recently. People always ask how her development is coming and we say slowly but surely. She makes some progress and then we have a minor set back. But we thank God these days have just been minor setbacks. Shes had an ear infection this past week but is coming out of it.

videoHaddie's therapy sessions have been going well. They currently have her working with switches where she can activate a switch and it turns on a moving toy. She seems to like some toys better than others. This could help us out greatly down the road in communicating what she wants. They make switches that are way more advanced. However, we still believe Haddie girl will talk some day so we the switches may just be for fun anyways. Don't tell her but Santa may be bringing her her very own switch toy for Christmas.

We also found out that Haddie has a temper. We thought she was having seizures at first. Her face would turn red, she'd kind of lock up, turn her head to the side and let out a scream lasting around 10-15 seconds...quite startling if you've never seen her do it...extremely startling at 3:30 in the morning coming through her video monitor which amplifies sound (envision a pterodactyl dinosaur coming down on you). Our neurologist investigated and doesnt believe those are seizures. Kids with seizures do not turn red. Kids who are mad turn red. Which makes sense because just about every one of those screams can be related to her being angry...pooping, laying on one side for too long, being hungry, or waking up in the wee hours of the night and no one is awake...etc.

 Slowly but surely we figure this girl out. And two nights ago we figured out it was time to crawl. She gets in these moods from time to time when she's fixated on crawling and she refuses to do anything but crawl. So we give her some pressure on her feet for a push off and away she goes. Out of her bed room and half way down the hall. She was working hard. She went to take another crawl and fell asleep halfway through it!

Thanks always for your thoughts about us and our family. God is still using Haddie to show people that He's good and in charge. Hope you all have a great Christmas. Never forget about the miracles God gives us through Christ.

Thursday, October 8, 2015

New Toys

Hadassah has been doing okay the past few months. She got over her UTI and was starting to get back to crawling when a cold set in...and stayed around for about 3 weeks. We gave her nebulizer treatments and just waited for her to get better. It seems to take Haddie twice as long as everyone else to kick the ailments she gets.

But she's doing better now! It's tough because during those times she loses some of what she has gained in the areas of crawling and head control. But we have bought a few things that we think will help her out:

1. A Cute Pink Helmet. Many kids have these because of seizures that cause them to collapse. Some kids have them because they hit themselves. Haddie has it simply because she gets rug burn when she crawls! The therapist had never seen anyone get a helmet for that reason but they said it makes sense. We just got it two days ago and you can tell by the picture that Haddie isn't used to it just yet.



2. The Firefly Upsee

 My dad saw this on Facebook and so we looked into it. Basically this will help Haddie experience what walking feels like. It will also put some weight on her legs which is also good for her. We don't know how well it will work but we are willing to give it a try. It's in the mail and we are super excited to try it out!







3. Curly Hair. She has so much hair! And it's very curly. So last night we decided for fun we would straighten it. We made the mistake of posting it on Facebook. The outcry against us was great! Apparently, you all like her curls...and so do we...so we gave her a bath and they came right back this morning!


Thanks for your thoughts and prayers. Haddie continues to impress us and melt our hearts. God is good.

Friday, August 21, 2015

Waking Up

The past three days Haddie has slept a lot. She would barely wake up in the mornings. She would stir a little in the afternoons and would catch up on eating a little bit in the evenings. We keep giving her antibiotics and waiting. She wasn't getting worse and there was no sign that this was anything other than her dealing with a UTI. A lot of people we talked to said they slept several days when they had theirs.

But today...she woke up! I went upstairs to say goodbye before work and she was wide eyed and looking around! She looks way better. Hoping this continues throughout the day!

I was very humbled yesterday. As many of you know, a great member of our church passed away yesterday morning. I had the privilege of going to the ER and being with the family right after he passed away. His wife's first words to me were "how's Haddie?" Mary, that meant a lot considering the moment that you were in. I cannot express how much all of your prayers and thoughts for Hadassah means to us when we go through moments like this.

Please pray for the Miller family.



(I asked Kate to send me a picture...looks like Haddie decided to close her eyes again!)

Tuesday, August 18, 2015

Infection

Well we have had several drama free and great months. But Haddie is in need of your prayers once again. She has been acting a bit sleepy this past week and yesterday was the worst. I could not get that girl to wake up and it was past noon. So we took her into  Camden Clark to do some tests. They ran her labs and it appears that she has a Urinary Tract Infection. So they gave us antibiotics to treat it.

This morning once again she is very sleepy and won't wake up to eat. We called the doctor and are awaiting a callback. We arent sure how a UTI would contribute to her being extremely sleepy two days in a row. Our biggest fear is that it may not be just a UTI but perhaps an even more complicated infection. But we don't know yet.

Thanks for praying for us. God is very good. We will keep you posted.


Monday, July 20, 2015

What's Up With Haddie

Been a little bit since I updated last. Haddie has been doing quite well. She continues to work on her head control and her crawling. It's slow coming but she gets her practice in every day. Usually around 7pm is when she's in the mood to crawl. Her legs and arms get to going...no matter where we are at...and that means she is ready to start scooting. She also enjoys time in her stander. I'm not sure how but this is her favorite place to take a nap.

About 3 weks ago Hadassah passed her swallow study. This gives us freedom to give her straight liquids! So every day we have been working on giving her a sippy cup. Our next goal is to get her chewing more. she already does some but it's not overly organized and effective...unless you are trying to brush her teeth. she hates that.

We have no complaints. Haddie keeps on doing her thing and life has been uneventful...which is good. Thanks for remembering her and keeping her in your prayers. she continues to show the power and creativity of God. He is good!

Saturday, May 30, 2015

The Stander


video

Hadassah has a new toy! For a few months now we have been trying to get a Supine Stander. We knew that we would need one to help Haddie out. We tried to get one through our insurance but they wouldn't approve the one we wanted. So Help Me Grow contacted the Shriners Club who sometimes helps with those things. They approved and bought the $7600 piece of wood for us! It finally came on Thursday! So what exactly is a stander? Check on the videos and that should give you an idea...

This device will help Haddie to put weight on her feet which will increase muscle tone. It will also help her with head control.

The best part is, she likes it. She needs to spend about 2 hours a day in it and we are working up to that. She seems to enjoy standing up and reaching for things.

All in all, things are going well with Haddie. She is eating well, gaining weight, slowly crawling, reaching, and tracking better and better.

She has quite the personality. The only negative thing is that we think she has figured out a way to throw herself into a seizure when she is mad. Why? Because she will scream with a seizure. Why would she want to scream? It makes dad and mom come running at 3 in the morning to pick her up, feed and change her. Or it makes mom and dad give up on trying to feed her something she doesnt like. Yep, we think Haddie has found a way to control us. The only times she has those seizures is when she is very mad.

I guess it is good that she is expressing herself. We just wish she would find another way to do it.

Thanks for all of your thoughts and prayers. We are excited to see how the stander helps Haddie with her development!