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!


Saturday, April 25, 2015

Happy 2nd Butt Birthday

Tomorrow marks Haddie's 2nd butt birthday! Odd to celebrate right?! 2 years ago Haddie stuck her butt out and said goodbye to the tumor and hello to the world...and then went back in the womb to chill for another 2 weeks. We watched all three episodes of Twice Born on PBS which documents the same type of thing we went through at CHOP. Kinda hard to believe that was us. No, we weren't on PBS...we just followed the same path as some of the people on the show. It's also hard to believe that Hadassah is almost two. Time flies when you're having fun...or something like that.

I don't update this often and I guess you can take that as a good sign. Things are going well!  Haddie has been very alert and more and more active these days. We go to Marietta once to twice a week for physical and occupational therapy and her therapists are very happy with how much she is moving. We get her on her belly a lot and support her chest and there's been a few times when she will lift her head. She also will crawl (more like scoot) across the carpet if she's in the right mood. Don't judge us for the rug burn on her head! We need to get her a little head scooter or something.

We are awaiting a couple of tools in the mail that will help her as well. One is hand splits. We are fighting her hands tendencies to want to curl in so the splits will help with that. We are also getting a supine stander which will be a major help. This device will help Haddie put pressure on her legs and will also help with neck muscles. I could try and explain it to you but a picture may be better. (That was a couple months ago when we tried out a stander)

She's eating and drinking well and seems to be gaining weight.

So all in all, life is good. It's always good...even when it's bad. Because we have a God that loves us and guides us and uses the bad for good. I'm really glad he does that.

Hope you all are having a great weekend. God bless and thanks for being our friends.

Tuesday, March 31, 2015

March Madness

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.- Matthew 6:24

It would be awesome if I could live that way a little bit more. Yet sometimes in life it is hard not to worry about things. We let a negative thought or a scenario invade our minds and it can take over and be maddening at times. 

I would say that accurately describes some of the feelings we had at the start of this month. Last month Kate and I took Haddie to see a gastroenterologist and a dietician at Akron Children's Hospital. Kate had seen them once before and it did not go so well. She went just to see about Hadassah's acid reflux and within two minutes they were pushing her to get a G-Tube. (A G-Tube is a port that they put into children's stomachs that allow you to give them medicine and food when they do not eat well). 

Our meeting went about the same. We felt they came at us rather strong and said Haddie was not where she should be nutritionally. "She is way below the curve. We believe she is dehydrated. She acts dehydrated. In fact, we have admitted kids to the hospital for less than this." That didn't sit very well with us. 

1. Haddie was sick that week and the week prior so she wasn't exactly perky.
2. Haddie has a mouth full of spit and frequent wet diapers...not exactly the signs of a dehydrated kid.
3. Last year we fed Haddie too much and she became obese. Now they are saying she's too small and not growing. 

I will be honest, they made me question all of that though. Kate felt like I kind of turned on her in the meeting. But if what they were saying was true, then I would be a horrible father who's slowly killing his kid and didnt know it. So we came to this compromise: "Give us one month to feed her what she should be getting to grow and to give her fluids for proper hydration and if we come back and she hasn't grown...we will consider the G-Tube". They agreed, we went home, and the worrying began.

All month we pushed Haddie to eat higher calories and to drink as much as she could. She crushed the calorie count they made for her. She did well on that. But it was near impossible to get her to drink the 700+ mls of fluid she was supposed to get. 

We weighed her on our own scales and she seemed to be gaining weight. So that took a little bit of the pressure off. Yet I also began to think more about what they said and the more I thought about it the madder I got. Haddie has never gone by the numbers. The tumor was a 1 in 40,000. Her chances for survival were 50%. The chances of her surviving if she was born premature after they found out about the brain bleed was extremely low. My child doesn't like statistics. The average adult is supposed to drink 8 glasses of water a day...I doubt I come close to that. So i wonder if they should admit me to a hospital because of it.

So I planned on firing these things out in the next meeting if they came at us again. I had about 15 verbal weapons in my back pocket if I needed to use them. It truly has been a long time since we felt like we had to fight for Haddie. Yet I still worried if it was the right choice. At the end of the day, a g-tube really isn't that big of a deal. Its a quick surgery. You can still feed orally...whatever calories or fluid that is lacking can be added via the tube. The tube can be removed when it is no longer needed. Yet Kate felt in her heart of hearts that it wasn't right for Haddie. "Eating is the one thing that she does very well on."

The last bit of worry came when we weighed her a couple of days before the appointment. It looked like she had lost weight. Uh oh we thought. 

So we went to the meeting last Wednesday. Turns out, God was right. He always is. Why worry? It accomplishes nothing. Haddie had gained weight. She's 21 lbs. The two demon doctors...well they actually were nice. They were extremely happy with Haddie's progress. They said she is right were she needs to be. They said continue doing what we are doing. The word "g-tube" was not mentioned one time. 

We walked out and felt peace. And we were finally able to enjoy the fact that Haddie has been doing awesome. She's been way more alert since we dropped her one seizure medication. She's moving, reaching, kicking, and even holding up her head more. Funny how worry can make you not enjoy the good stuff right in front of you. 

So long post. Moral of the story...trust Him to is able to do immeasurably more than we could ever ask or imagine. God is good. 


Wednesday, February 11, 2015

21 Months Update

Whoever thought that parents should count their kids age in months up until they are two should be slapped 23 times. That's hard to keep track of! I'm glad it stops at two. In case you were wondering I am currently 343 months old. But I don't look a day past 300!

Anyways, Haddie is doing great. Last week we lowered the Sabril from 9mls to 4mls in the morning. And the next day she woke up. It's amazing to see how much more alert she is. She reaches for things and is awake most of the day. I'm sure this is what has been messing with her development. She's been too out of it to do much. And the good part is that after 3 days the seizures went away. This is what we call the sweet spot...alert AND no seizures. Hope to stay in the zone.

We got some AFOs (ankle/foot orthotics) this past week as well. Haddie's toes point downward due to her low muscle tone. We are constantly stretching her so they don't get stuck like that. These orthotics will make her feet go at the 90 degree level and will relieve some of the tension...and the time we put into stretching. We start with 15 minutes 3 times a day but eventually will work up to her wearing them all day long. She likes them a lot. And why wouldn't she? Take a second to point your toes downward. Feel that pressure in your calf? Now bring your toe back up to the normal position. Ahhhh, much better.

We had an all day doctors appointment yesterday that went well for the most part. The dietitian and the gastroenterologist are really pushing for us to get a G-tube. Thats the port that would go into Haddie's belly that we could give meds and extra nutrition through. Haddie has not grown in a few months and they think she is malnourished. We aren't so sure about that. Haddie eats a lot and we give her a lot of high calorie food. And I'm not sure they really consider how much energy a normal toddler would use as compared to Hadassah. Due to the meds she pretty much lays most of the day other than when we play with her. So maybe she doesnt need the numbers they want us to shoot for. But we do know that she needs to grow. So we are upping her calories again to see if we can can growth in the next month. If she's the same we will have to consider the G-tube. Everyone we talk to that has one likes it...but for us...eating is the one of the normal things Haddie does well. We want to give her a chance to do it all on her own for going to the tube. We will give her the month to decide on that.

Everything else went good. We are going to continue to lower Sabril at a slow rate and hopefully she will wake up even more.

She's making good progress. Thanks for the prayers. This post is getting long so I will end it here. Thanks for reading! Have a great week!