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.

Haddie'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.

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.

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!)

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.

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!

The Stander

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!

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.

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. 

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!
 

Ghost Girl

Things have started to get a little bit better for Haddie since I last wrote. She is slowly getting over her bronchilitus and is eating better. She's still pretty knocked out and lethargic from her seizure meds. We wrote to our neurologist and he had us take down the Sabril medication starting today. So we will see if that helps with her alertness.

Most of you know Haddie had a level 4 brain bleed on both sides of her brain before she was born. Doctors have told us that she will not be able to do very much. She's already defied the odds and is doing way more than ever expected. But we have to admit, this is hard sometimes. We want her to do more and it seems that things often go at a snails pace with her. We dont know how much is sinking in...or if anything is.

I picked up a book this past week that has challenged me as a parent. It's called Ghost Boy. Maybe you heard about it on the Today Show. Its a book written by a guy named Martin Pistorius (not the blade runner, shoot his wife guy...that's Oscar). He was a normal little boy until he was 12. At that point for some reason unknown to doctors he started to regress both physically and mentally. He lost all of his motor skills, speech skills, and every other kind of skills. Doctors said he was brain dead. And in his book he says that's what he was...for four years. But then his mind woke up. He became aware of his surroundings. But his body wouldn't respond no matter how hard her tried. For 9 more years he was a mind trapped inside a body. He talks about how he would be dropped off at a care center each day and often would not get any mental stimulation all day. He'd watch Barney for hours. Most people treated him like he was an empty shell...a ghost boy. But one day he was given the chance to be tested using a computer that would help him communicate. It took a couple of years but he finally showed everyone that he was there all along. And now he's a college graduate, is married, has a job and a best selling book.

You never know what's happening below the surface.

That story fills me with hope and wonder. You can see in Haddie's eyes that there is something going on in her head. Some of the doctors and therapists encouraged us and told us that we have no idea how a growing brain like Hadassah's will compensate for the damage that has been done. Maybe she is learning...but her body just isn't showing what her mind already has comprehended. This challenges us to dig deeper and provide more stimulation and chances to learn. We do a decent job at that but sometimes it is tough when you don't get a response in return.

Martin never gave much of a response either.

There are days that we do better than others. We still ask for and need your prayers. God gave us Haddie for a reason and we are beyond blessed to have her in our lives. Thanks for reading.

God is good.

Cough, Sniffle, Cough

Getting used to the new year yet? We are still getting adjusted. Haddie has had some little issues lately that have been more annoying than anything else. She had an increase in those little 30 second seizures so we went up on her Onfi. That led to less seizures but then she was very sleepy. Then after a week she woke up and we were good for a couple of days. Then the seizures came back and came back stronger. So we went back up on the Onfi and you guessed it...now she's sleepy again!

Tis the cycle.

Then on top of all that she has a virus (bronchiolitis) now. For the past week she's been hacking and had a lot of congestion. But since there was no fever and she was eating well we didn't go to the doctors office. Yesterday we decided to go since it won't go away. He was concerned and put her on a nebulizer treatment overnight. She was a little better this morning. We saw him again this morning and he said that if she wasn't better by tomorrow then we might need to stay at Camden Clark until she gets over it.

So we are loading her up on fluids and nebulizer treatments today. Prayers would be appreciated. We are used to this and hospital stays but it definitely gets annoying and throws a wrench in things. But sometimes that's how life works, right?

We don't ask God to make everything peachy and okay. We ask Him to help us glorify Him through whatever circumstances we are going through...good or bad.

Hope you have a great week. God is good!