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!
 

Tuesday, February 3, 2015

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.

Tuesday, January 20, 2015

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!

Friday, December 26, 2014

Merry Christmas and a Haddie New Year

So I said I was going to update more in my past post. Turns out I lied. Sorry. But I still love you...and I know you still love Haddie so I will get a pass this time :)

The EMU stay ended up being a good thing. We found out she was having little seizures and they were happening more frequently. We took away a med, added a new med called Onfi, and things are much better. It makes her a little sleepy still but she's starting to come out of that. And we've seen a lot less of those little seizures.

We keep working with her on head control and other basic motor skills. It's a daily chore but one we don't mind doing. There's a million and two exercises we could do with her but we try to focus on a few simple ones each day.

She's eating like a champ. And drinking. We thicken water just a bit and she slurps it down pretty well. She takes 500 calories of food off of a spoon each day.

We've enjoyed time at Christmas the past couple of days. Haddie likes to hang out with her new cousins Jensen and Sylvain. She was a good girl this year so Santa came to see her. She wasn't so sure about him though...
 Hope you all had a Merry Christmas. God is very good. We hope you remember the best gift of all...the sacrifice of his Son. Merry Christmas and a Haddie (happy I mean) New Year!

Wednesday, December 10, 2014

EMU Stay

It has been a while since I have updated...and I have received the complaints about that. Sometimes I feel like Haddie is a celebrity and I am her PR manager. But to be honest, I am honored that you are still following our story. So I will continue to update. And maybe a bit more frequently.

A good bit has happened since her shunt surgery back in October. On Nov 25th we had an eye muscle strengthening surgery. This was to help with her one eye that was slower than the other. Other than us forgetting to tell them not to give her morphine and her being asleep for 24 hours afterwards making it impossible to give her her meds...it went well. Her eyes are improving and she is tracking a lot better now.

We are currently in the Epilepsy Monitoring Unit at Akron Children's Hospital. She's been having little episodes more frequently these past few weeks. When they come on her Haddie's face gets very flushed, her arms go stiff, she gets a panicked look on her face, and her tongue thrusts rhythmically. However, they only last for 10 seconds to a minute. We had caught a milder version of this a few months ago on an EEG and it didnt come back as a seizure. But they have become more pronounced now and our neurologist seemed to think a 3-4 day continuous EEG monitoring would be good for her. So I checked in with her yesterday. And she was a good little girl and had 5 of them for them to record. we figured she would be a booger and not have any this week.

Turns out, they think they are seizures. We dropped a medication last night. I am currently waiting to see the doctor and see what the plan is. They may add another med. The plan is to watch her until Friday but if they see what they want to see we could get out earlier.

Life's good. Haddie really is doing well and while we dont like seizures, these a way milder than what we dealt with in the early summer. But hopefully we will try something that can fix these little ones too. I will update with the results later on.

Seriously, if you are still following our story, thank you. I appreciate your prayers and thoughts for my family. God is good.