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!