MRI update

Hello Everyone! We spoke with a Neurosurgeon after he examined the MRI and the baby and he said Ezekiel will have surgery to place a shunt to remove fluid from his brain either this weekend if they can schedule it in or at the latest on Tuesday. He also gave less severe developmental delays than had previously been given. Thanks everyone for your thoughts and prayers! He and Mama(Melissa) are doing well! The only additional prayer request is he has had a mucus buildup that is affecting his breathing, however he is still breathing on his own. In Christ, Brian

Feedings

Hi everyone....

Sorry it has been so long since our last update, but things have been pretty crazy. Zeke is still having a hard time with his feedings so the doctors have decided to give it another week and if he is still struggling they are going to put in a g-tube (a feeding tube that goes directly into his stomach) so that we can take him home. The good news about this is obviously that we an go home, but also that because he is digesting and able to eat, we can work on his feedings at home and the feeding tube will be temporary. He had another MRI this week which showed that there is still fluid and the ventricles are still enlarged. It appears that he has several brain anomalies but it was difficult to see anything for sure because of all of the fluid. He has had several blood tests but so far there is no diagnosis. We've had a lot thrown at us this week, so please pray for us to have the strength to deal with what God has given us.

Also, in case you weren't aware, we are now staying at the Hospitality House--a house beside the hospital where people who live out of town and have loved ones in the hospital can stay. It's been a blessing to be closer, but difficult to be away from home. If you need to reach us, please feel free to call our cell phones.

Thank you all so much for your prayers. We humbly ask that you continue to pray for Zeke and our family. We ask for prayers for strength, endurance, and that we will be able to accept whatever God's will is for Zeke's life. Please continue to pray for Zeke's eating, his hear rate (as he's had occasional drops which will keep him in the hospital), and God's will for our future. We cannot thank you all enough for your love, support, and prayers.

In Christ,

Brian and Melissa

Still not feeling well

We just ask that you continue to pray for Zeke's health. He is still not feeling well and we had to take him to the emergency room last night. They still can't find anything wrong--the doctor last night said that it was possibly "overlapping viruses." He seems to be feeling a little better today, but still crying a lot and not eating. Please pray that he will feel better soon.

9 Months Old!

Well, it's hard to believe, but Zeke is 9 months old now. He had his check up today and things went pretty well. He is obviously delayed in most areas, but we are hoping that his upcoming surgery will him to do some catching up. He has lost a few ounces, so please continue to pray for Zeke's eating and weight gain. He is still getting the tube feedings at night so we aren't really sure why he's losing weight. We were really disappointed. We are going to increase his intake of formula as well as solids and hopefully this will help. She also said that he's on track as far as speech goes. He's babbling a lot and even mimicking some. (Especially Dada!) We are very excited about this!

We saw Dr. Matthews--the reconstructive surgeon--on Friday, but still no date for the surgery. Dr. Matthews has ordered a 3D life size model of his head so that he can plan out exactly what he wants to do. That should be here this week so we should hopefully know something late this week or early next week. We're all a little nervous about that surgery, but excited about how it will improve his development.

Thank you all again for all of your faithfulness to prayer.

Brian and Melissa

Zeke's week

We'd like to think everyone again for their prayers for Zeke's health. He's felt a lot better today and is starting to be more like himself. Yesterday he had a neurologist appointment. The neurologist had good things to say--he's very pleased with his development. He said he won't need to see him again until he's a year old! Today he had an appointment with the urologist and he DOES have a hernia. The urologist feels like it's a strong possibility that the hernia was causing Zeke the pain that landed us in the ER earlier this week. He'll be having surgery Friday, August 4th to fix the hernia as well as the bladder reflux. We are very grateful to have found the problem and that it can be fixed. Please pray for this upcoming surgery.

We also had an appointment with the pediatrician today and Zeke's lost 5 oz being sick. This is not a good thing since he's already underweight. We have an appointment with the GI next week and we'll discuss possible options. A Nissen Fundaplication and/or G-tube are still possibilities. Please continue to pray for Zeke's stomach problems.

Thank you all again for all of your thoughts and prayers!

October Update

Hi everyone....

I just wanted to ask for prayer for Zeke. For some reason, he's had a really hard time tolerating his feedings the past couple of days. He hasn't wanted much by mouth and after he has a tube feeding he's been doing a lot of wretching. After he has a tube feeding, he wretches and a lot of mucus is coming up out of the tube. This could possibly be because he's getting over a cold or just that he isn't tolerating his feedings. We've backed up a little--he's now getting only 4 oz every 4 hours. He's only had one feeding so far today and he did fairly well--he only wretched one time and only a couple of teaspoons came up so that's a big improvement over yesterday's battles. He's lost a couple of ounces which is discouraging, but I'm trying to look at the big picture and at how much he's gained total in the last few weeks. Dr. Twerdi's nurse is setting up appointments with Zeke's GI (stomach doctor), the surgeon who placed his g-tube, and an appointment for Zeke to have another upper GI performed. They aren't really sure why he isn't tolerating his feedings better and want to see what's going on. They feel like he should be able to tolerate more at this point than he is currently. Please pray that we fill figure out what is going on and help Zeke to eat and gain weight.

I talked to both Dr. Twerdi and his speech therapist yesterday about our long term plan for Zeke's feedings--and both feel like he could still come off of the g-tube at some point. The speech therapist is encouraged by the fact that he is at least taking something by mouth. I feel like every time we take a step forward, we take two steps back, but she encouraged me by saying that she's worked with other children who have just decided one day they want to eat again and they get to remove their g-tubes. We are grateful for Zeke's g-tube as it has made our lives SO much easier, but it's hard being a mother and feeding your child through a tube--it just isn't natural. As always, please continue to pray for Zeke's desire to eat.

I start back to work Monday so please be in prayer for our family and our schedule. Things are getting better at work, but I know it's going to be hard to go back and leave Zeke again. I've really enjoyed the last couple of weeks with him--I've been able to see him improve so much!

I filled out the last part of the application with the Department of Social Services yesterday (the Medicaid portion) so hopefully the ball can continue rolling for CAP-C which would give us in-home nursing and Medicaid. The medical bills are stacking up, but God has been faithful up until now to provide and I know He will continue to do so. Our new insurance isn't covering some of the things that our old insurance covered, but the good news is there is a max out of pocket and once we hit that, what they do cover they will cover at 100%! We're very excited about this!

As always, thank you all for your love, prayers, and support!

Melissa

Zeke's Baptism

Ezekiel was baptized on July 23. Brian gave a prayer for Zeke that we thought we would share:

"You made all of the delicate inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous and how well I know it! You watched me as I was being formed in utter seclusion--as I was woven together in the dark of the womb. You saw me before I was born--every day of my life was recorded in your book. Every moment was laid out before a single day had passed."
--Psalm 139:13-16

Ezekiel, when I read these verses it makes me think of how the Lord has taken care of you and will continue to do so. These are the verses your Mother and I have clung to through your life. I pray you would love and seek Him with your whole heart and made him the man God made you to be. Your Mom and I pray we would be a good example of Christ to you.

Updates

For Hines family updates, please visit hineshappenings.blogspot.com