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!

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.

Dedication

Deut 6:4-9 4 “Hear, O Israel: The Lord our God, the Lord is one. 5 You shall love the Lord your God with all your heart and with all your soul and with all your might. 6 And these words that I command you today shall be on your heart. 7 You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise.8 You shall bind them as a sign on your hand, and they shall be as frontlets between your eyes. 9 You shall write them on the doorposts of your house and on your gates.

Today was an excellent day at worship. We formally dedicated Haddie to being a part of the church and to raise her to know the Lord. The church dedicated themselves to help us...and several other families at the church did the same. It's amazing to have a great church family to encourage and challenge us. 

Haddie has been doing great lately. She continues to gain weight and get chubbier. She's taking 160mls  every 4-5 hours. We met with Help Me Grow this week and they seemed to be happy with her development. She can lift her head better and tracks a lot better with her eyes. 

One thing they said last time we met seems to make sense to me. Obviously Haddie has some challenges due to her brain. Yet as I've said before, no one can really predict what she will be able to do and what she won't. She is currently 8 months old. However she was born 3 months early so they say her "adjusted age" is 5 months old. That's where most people track her development. But the last time we met one of the therapist said there is research out there suggesting that they should also not count months that the child was in the NICU or in the hospital. She said that during those months the baby was trying to just survive, not develop. So with that in mind, and if that research is true, Haddie's adjusted age would be 2 months old....since we have only really been home since November. 

We are blessed just to have Haddie here and we do not take that for granted. God can do what he wants with her. But we do try to track how she is developing and we try to challenge her. So if that research is right and Haddie is closer to a 2 month old than a 5 month old...I'd say that's about right and she's on par. 

She truly is beautiful and we love seeing her learn and grow. We meet with a dietitian on Friday to make sure we are feeding her the right amount and the right way. Then we go back to Akron on the 7th for another EEG to see where we are with he seizures. She hasn't had a seizure or any signs of the "west syndrome" that we mentioned before...so we pray that the results are better. 

Hope you all are having a great week. Thanks for your continued prayers. 

EEG News

Today Haddie had her EEG in Akron at 7 am. That took about an hour and then we went to see the neurosurgeon while we waited on the results. Dr.Chen is happy with Haddie's shunt. Everything seems to be going pretty well there. So well in fact that we don't have to come back and see her for 3 months. 

We then went in to see the neurologist, Dr Enlow, to discuss the results of the EEG. The good news is that there is constant brain activity. Praise God for that. The last one they did in September seemed to show some activity and then no activity. Today is was a constant stream of activity...which is a great thing.

The not so good news is that a few of the lines on the EEG are pointing to a disorder that we don't want. He said that she could be headed toward "Infantile Spasms". I could try and explain but this definition would work better: An infantile spasm is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months.

So it is definitely not something we want. "Developmental regression" is not at all what we want. He is not sure about this though. Haddie is not really showing any physical signs of an infant with the spasms. She has no visible seizure activity. So it might be West Syndrome or maybe not. If it is, the only thing they can do is treat it with strong medication that has some very serious side effects. He wants us to come back Feb 10th to do the test again. He said that hopefully the test would reveal that those chaotic waves are going away.

So here we are again. We are trying to stay positive. And we are. I'm fairly confident that she doesn't have that disorder. But the possibility of it certainly steals your breath like the temperature of today's air. 

God is good. Always has been, always will. We trust that He has a plan for Hadassah. We ask you to pray that this isn't West Syndrome. We are so excited and proud about the progress Haddie has made...it would be very tough to see her go backwards again. 

Love you all and hope you have a great week. Stay warm!

What A Year!

It's been a wild one! I remember thinking that 2012 was a doozy...little did I know what 2013 would turn out to be! Finding out about the SCT in March, going to Philly in April, coming back in August, going to Akron for most of September and October, and finally getting into the swing of things the past two months! Whew! We made it through and are enjoying Haddie every day. Praise God. Kate wrote a Facebook post that explains our doctors visit today:

Really good Doctors appointment this AM! No G-tube right now and we are allowed to remove the NG tube(feeding tube) from time to time at our discretion  Little Miss weighed 12 pounds 14 ounces and yesterday she took all feeds (except 3 AM) from the bottle. Biggest compliment from the Dr.... "You make fat babies, and that's what I like to see!" Yay! Haddie is finally chunky!!

So things are going very well. Haddie is growing and learning. We go to Akron on the 7th to get an EEG to see if she's still having sub-clinical (non visible) seizure activity. If not, we get to start playing with her seizure meds quickly. If so, we will start playing with her seizure meds at a slower pace.

We hope you all had a Merry Christmas and we wish you a Happy New Year. God bless!


Below is a picture of Haddie sleeping through the Browns/Steelers Game. She unfortunately lives in a house divided!

Seize-ure the Day

Like my creative yet stupid titles? Thanks. But hey, it gives you an idea of what this blog is about...seizures. The good news is that Haddie hasn't had any seizures for a long time! And the bad news is...well there really isn't any bad news. Praise God!

We took Hadassah to a Neurology visit on Wednesday in Akron and met her new and ongoing neurologist. To keep you straight because it can be confusing here's who we see:


Akron-
Neurosurgery- They deal with Haddie's shunt
Neurology- They deal with Haddie's seizures and medications
Palliative Care- Dont worry, it's not the same as elderly palliative care. They simply coordinate our visits and keep track of Haddie's ongoing progress

Parkersburg- Our Pediatrician
Help Me Grow- Works with us on Haddie's physical therapy and her speech therapy (aka feeding). They come into our home once or twice a month.

Marietta- Speech and PT
We go over once a month to get some extra tips and advice for feeding and physical therapy

So anyhow, we met with Neurology to talk about Haddie's seizure medications Haddie didnt really have seizures until the shunt infection. So we are not entirely sure that she still needs to be on the meds. Dr. Enlow, our new doctor, said that may be the case but he's not so sure. He would have expected the seizures to stop after the infection cleared but instead we had to up our dosage on the meds.

But he's willing to test this out. We come back on January 7th to do an EEG. They will take a look at Haddie's brain and see if she has any signs of seizure activity. If she does not we will go with the "aggressive" plan. That plan would be to take away one of her meds and see how she does and then take away another med in a month or two. If she shows signs of seizures then we will go with the "conservative" plan. This plan will be to slowly tweak her meds and see what is going to work best for her over the coarse of a few years.

Haddie is a lot more alert these days. Our concern is that Phenobarbital could slow down the speed of her development. So either way we will see if there is a better option out there for her.

The other cool news is that Dr. E tested Haddies reflexes. When he pressed on the bottom of feet her feet shook a bit. He said this was due to Cerebral Palsy. We knew that Haddie could have this from the get go. He said though that he would expect someone with CP to be a lot tighter in her hands, arms, and legs...and Haddie is very loose. That was encouraging to hear because every day Kate and I do stretches with Hadassah to keep her loose....so it must be working.

3 nights ago we moved Haddie out of our room and into hers. She seems to be doing pretty well. All in all she is doing great. She is taking most of her bottle and she weighs over 12 lbs now! We meet with our doctor on Dec 30th to determine whether or not she will be getting a G Tube or if she can eat on her own without any tubes. We are hoping for the 2nd option.

Thanks for your prayers and please keep them coming. Pray that Haddie continues to eat well and that they see no signs of seizure on the 7th. God is good no matter what. We hope you all have an excellent Christmas and a happy New Year!!!!

7 Months

Hard to believe it has been 7 months! Haddie is growing and learning every day. We had a good doctors visit last week with our pediatrician. Haddie was up to 11 lbs 2oz. The doctor said she was gaining weight well and was happy with the amount she was taking through her bottle. We will meet with him again on Dec 30th to see how she's doing and then decide on the G Tube. If she's doing good on the bottle she may not need the G Tube...which would be great.

It's really cool to see Haddie making little steps. She seems to be getting stronger neck muscles and can lift her head a little bit better now. She also is getting better at tracking objects with her eyes.

The best feeling is that Kate and I are finally getting into a routine. We feel settled. We are comfortable leaving Hadassah with family and friends on occasion. Last night Kate and I went out on a date to grab some dinner and watch a movie.  What a blessing. It was good to just be a husband and not worry about being a dad for a little bit. Kate and I will make that a monthly practice...and I encourage parents out there to do the same. It really was an enjoyable night.

We are very thankful for your continued prayers. Here's a cute video of Kate's family and Haddie on Sunday afternoon:

Snoozin