Wednesday, April 9, 2014

One Year of Frogger Blogging

I just happened to hop online tonight and take a look at the blog. I get overwhelmed every time I see how many of you have looked at these rants and writings...over 240,000 page views! I take satisfaction not in the massive number but more so in that those numbers represent prayers to God on our behalf.

Then I scrolled down and realized it's been a year. 1 year ago I started this as a way of getting prayers and information out about our struggles. Here's the first post if you never got the chance to read it: First Post.

I just write this to tell you all that we serve an awesome God. He is loving and He is just. I realize that is easier for me to write and say considering he found it in His will to answer our prayers the way we wanted Him to. That is all the more reason for me to praise His name today. And I ask you to please pray for those who are in the situation were in a year ago today.

God is good. All the time. And we are happy to have everyday with our Haddie. Thanks for joining us on this journey!

Tuesday, April 1, 2014

Foolin Around With An EEG

We had our EEG today. Turns out, Haddie is an alien. April Fools! Okay, now that we've got that out of the way, here's the scoop.

Haddie's EEG went pretty good. Not a lot has changed but it does present some good possibilities. There is activity in areas of Haddie's brain where there hasn't been activity before. The not so good news is that there's a bit too much. The EEG lines tend to spike in certain areas. However, this could just be lines showing up because things are starting to fire and Haddie's brain is figuring things out.

Dr. Enlow couldn't really say if it was good or bad but said time will tell. The spikes, while showing increasing activity, could still point toward infantile spasms. He is increasing the dose of her one seizure med and getting rid of the other. Our old nemesis drug, phenobarbital, will be gone in 2 weeks! It has served us well but it has also cause Haddie to sleep a great deal as well.

So all in all we are happy. Doctors in Philadelphia predicted that she wouldn't have any brain activity. Period. And they were right. For a while. But you never know what the brain can do....especially when 10,000 some people plus have prayed for it. She also doesn't have to come back to see neurosurgery for 6 months. We come back in 3 weeks to get another EEG with Dr. Enlow. God is good.

We also found out that we are still feeding Haddie too much probably. Our pediatricians opinion is that she needs to have excess weight to bank on if she would get sick again. The dietician we saw today agreed but not to the extent where we are. Haddie's weight for her age (17.6lbs) is in the 97th percentile. However her height (25inches) is in the 1st percentile. Translation: we got a round little girl on our hands. And while that may help her if she gets sick, in the long run it could hurt her. We know for a fact is has literally slowed her down some. She used to roll over and now she can't. So our plan is to cut back on how much fortification we put into her feeds.

Praise God on behalf of us today. It has been a good one. He continues to help our Hadassah and that is no joke. Have a great week!

Monday, March 24, 2014

March Gladness

Been a good while since I updated so I figured I would do just that. Hadassah has been doing pretty well. This past month she has been growing and developing. I dont think I updated after her last went very well. The Sabril medication at the lower dose had started to change the EEG for the better. For the past month we have been slowly increasing the dose. We go back on April 1st for another EEG to see if the hypsarrhythmia is better or gone. We pray that it is...this will greatly help her development.

The only negative is that she still has the feeding tube in. We have been giving her oral stimulation with each feed to try and keep her feeding skills up while its in. After the 1st, if everything looks good, we will schedule another swallow study. Really hoping she can pass that so we can get that tube out. If she fails, we are probably headed toward a G-Tube...the port in her belly that requires a surgery. From the sounds of our blogs it might seem like we view the g-tube as the antichrist or something. We know its not that bad and many kids do well with it. But to us it would just feel like a step in the wrong direction. But we shall see.

God is good. Life with Haddie has been good. It's a struggle sometimes. We have to push ourselves to push her. That's what she needs. It's just hard sometimes to tell if she likes something or if she is ticked off at you. I need to speak "grunt" a little better. But we love giving her baths and playing with her. Just the little things that most people wouldnt notice are what drive us to keep going. The other night we put her in her seat and put the mobile above her. She started batting at the dangling animals. We cheered for her like a college frat boy at the NCAA tournament.

We took a look at some old videos from the NICU last night. That seems like a dream now. We have come so far. God is faithful and good.

Hope you all have a great week!

Thursday, February 27, 2014

Swallow Study Sorrows

It's been a long day so I will jump right into it. Haddie was scheduled for a swallow study today. Our Dr. had heard the "wet" sound from her throat that we have grown accustomed to. Haddie has always had a different sound from her lungs but we just assumed that was Haddie. Back when she was in the NICU they kept waiting for that sound to go away before taking out her breathing tube after one particular surgery. A doctor finally said that's just how Haddie sounds and didnt worry too much about it. She passed a swallow study before we left the NICU.

We do notice that Hadassah coughs and chokes here and there during her feeds. But she usually takes most of it down unless she is sick. And she has been gaining weight.

But today we discovered through the swallow study that Haddie is aspirating. What that means is when she takes a drink most of it goes down her throat to her belly but some of it goes to the "pipe" that goes down to her lungs. If that continues to happen she can get infections or pneumonia in her lungs. We tried a couple of different sized nipples on the bottle but got the same result. They waited a couple of minutes and tried thickening the feed but that didnt seem to help because at that point the milk was already in the pipe.

Their suggestion is that we put back in the NG tube through her nose and feed her that way for a while until she develops some more.

Kate and I both hated that idea. To us, it's a step in the wrong direction. But we also have to do whats best for Haddie. We called the Help Me Grow speech therapist we see to get some advice. She said shes not entirely sure that Haddie wouldn't do well on thickened feeds. She says that once Haddie failed the regular flow nipples, the results of the next part where they tried thickening the feeds could be off.

Her suggestion was that we put the NG tube in for 2 weeks and then repeat the swallow study back in Akron. This time we will start with the thickened feeds and see how it goes. She even volunteered to go up with us so she can see the study. Its not that we, or her, distrust the people at Akron. It's just that they do not know Haddie.

If in 2 weeks when we do the study again Haddie also fails that test...then it's time to consider a G Tube which we do not want at all.

But that's life sometimes. God is still good and we are trying to see past this. Maybe this is His way of helping her not have issues with her lungs when she's older. I told Kate it will be one of those things we don't even remember down the road. But right now it's tough. We were very excited to get the tube out...we both cried tonight as we put the thing back in.

Pray for our faith to increase, Haddie not to remember all of the stuff we have to put her through...and a good result on her EEG test on Monday. God bless!

Monday, February 10, 2014

Navigating Moguls

We have been enjoying the Olympics. As I sit here and write this, the NBC Olympic music is playing. Kate loves the figure skating. I'm more into the mogul skiing. Kate asked last night why anyone would really want to do that. There's a thousand bumps on a very steep hill and some people think it a great idea to strap some wooden planks on their feet and go over the edge. I told her there's a rush involved with navigating those bumps and figuring the best way to go over and around them.

And that's what we are doing with Haddie. There's many, many, many moguls behind us. Just read the previous blogs to see that. And now, there's another mogul in front of us called West Syndrome.

We had an EEG done today because a month ago the EEG showed that Hadassah has  chaotic "waves" showing up. The good news is that there is brain activity. The bad news is that these waves aren't good. The waves, as we understand them, are sub clinical seizures. They call this a "hypsarrhythmia" or "infantile spasms" which falls under the category of West Syndrome. Haddie doesn't currently show any visible signs of these seizures. However, today's EEG shows that they have progressed. The neurologist believes that this will continue to progress. Even without visible seizures or spasms...this is slowing her development...and he believes eventually it could cause her to go backwards in development.

There's a few options but the best treatment is a drug called Sabril. It has been tested and seems to have the best results. The doctor believes that this could reduce or even get rid of the hypsarrhythmia. This could really help Haddie in her future development. The negative: 30% of those that taking Sabril suffer some kind of peripheral vision loss. Some of the 30% lose so much that they can only see what's right in front of them and others only lose the edges. We would prefer her to not lose any eyesight. But we also want her to be able to hold up her head, to crawl, or just to smile at us (parents, don't take that smile for granted...we are longing to see Haddie do it!)

So we are going to go for it. It's a bump, a mogul, a...pain in the butt. But God is good...and we pray that he will use this drug to help our Haddie. She's 9 months old today. She's growing (15lbs 8oz), she's moving, she's beautiful, and she has a personality...we have a lot to be thankful for. Hadassah is already a winner.

Bring on the next mogul.

Monday, February 3, 2014

Snowed In Update

Woke up to 7 inches of snow! I think we will stay put. Here's the latest on Haddie.

A week ago Friday we went up to Akron to see a nutritionist. We had felt that we had been feeding Haddie way too much. We trust our pediatrician on most stuff but the amount he had us feeding her seemed to be a bit much so we figured we could go up there and get a second opinion. While eating Haddie would get very tired and often would throw up a bit...maybe once a day would she take her full amount. The nutritionist agreed with us. She said that Haddie is growing so fast that it is impeding her development. She's so chunky it is making it harder for her to get the muscles she needs to lift her head.

We were feeding her 160mls every 5 hours. Our pediatrician wants her to grow between 20-30 grams a day. The nutritionist said that for Haddie's size she should be growing only 15-20 grams a day. She suggested we drop to feeding her 145 mls every 5 hours or to do 120 every 4 hours. We chose the later and Haddie has been doing great with it.

But we had to tell our doctor on Thursday. It didnt start off too well. He disagreed with the nutritionist and said she didn't see the whole picture. This stressed us out a bit because we would have to choose whom we should trust on this. But as we explained how we had switched over and how she had still gained weight he said that maybe it would work. He agreed that her intake was slowing her development. He was okay with that because his goal is to get Haddie caught up. He said he wants h

er to have extra weight in case Haddie had to go back to a hospital again and would need the reserve. He said that since she is still gaining weight he will go with it and coordinate with the nutritionist to form a plan. So we were happy about that. Feeding her is less stressful and she actually seems to be hungry...and o by the way...she weighs 14lbs 14 oz right now!

Haddie has been doing great. She's getting bigger and is slowly learning how to hold up her head and move a bit more. We had a physical therapy session the other day where we learned to do some yoga with her that will help her out. It's just so awesome to see how far she has come. We go back to Akron on the 10th to see what her seizure situation is.

Hope you have a warm and safe day. God bless!

Tuesday, January 21, 2014

Hadassah's Journey Video

My friends Lucas Metz and Nathan Tewanger made this video for us. They showed it at the Belpre Youth Rally this past year. Figured I would share it with you. They did a great job. Click HERE to check it out! Warning: probably should have some tissues on hand.