Daniel Update from Laura

Daniel had a grand mal playing in the living room near the front door on Thursday March 27, 2008. Because of his blindness, he loves to spin for self-stimulation. As Daniel was happily spinning, he had a grand mal and dropped to the floor. Daniel is fine, I believe he does not even know what hit him. We gave him diastat (rectal valium) to stop the seizure and he slept the rest of night and woke up as happy as can be the next morning.

Daniel is scheduled for another video EEG on April 16 - April 19 (72 hour test) at Children's Hospital. Whatever the test shows, we have no plans of getting anymore brain surgery in the near future.

Daniel has been diagnosed with severe encephalopathy (severe degenerative brain disease). Daniel has scarring on the right side of his brain and he has atropy on the left side of his brain.

Daniel is such a special gift from God and brings us so much happiness and love.

The Sluss Family

Please continue to pray for Daniel, his parents, and family. Pray especially for his dad (Mark) for the next two weeks as he is in Ethiopia for a Work and Witness (short-term mission) trip with three other members (David, Roz and Lorraine) of our church. For additional information see this post.

Short Term Missions

My church is very active in missions whether it be local (compassionate ministries), in the states or abroad. Today four people - Mark, David, Roz and Lorraine left for Ethiopia to begin their Work and Witness (W & W) trip. While in Ethiopia team members will be constructing homes for widows, using local materials. At the same time people from the community will be working on the Training Center Project. W & W team members raised money to help with the cost of building materials. Initially it was planned that team members would participate in building the Training Center, but it was decided that locals should do the labor to give them a sense of ownership.

The W & W team will be showing the Jesus Film during their time in Africa as well. Please pray that our Ethiopian brothers and sisters' hearts are receptive to God's plan for their lives. Please keep, Mark, David, Roz and Lorraine in your prayers as they sacrifice their time and share their love. They will return on April 13th.

Side Note: Some of you remember Daniel - his dad, Mark and his Aunt Lorraine are team members from our church. His other Aunt Carolyn from another church is also on this mission trip. They are going during a time when it would have been easier to say no because of the trials they have been going through with Daniel's surgery and seizures and with their mom, Joan. Joan was diagnosed with cancer before Daniel's surgery and has had a stroke and some other difficulties as well. Please keep their whole family in prayer during this W & W trip and beyond. Also keep Laura (Daniel's mom) in prayer as she will be shouldering all the responsibilities for her family while Mark is away. Laura said she will be sending an update on Daniel soon too.

From Laura (Mark's wife)- 4-1-08

Hi Robin:
On the way to church last Sunday, I was missing Mark so much, then this song came on the radio by Audio Adreneline "Hands and Feet". I cried almost all the way to church because all I could think about was Mark and the team. I am so proud of all of them, especially my husband. I wish I could be there with him right now.

The link to the song and video is below, it is powerful. I think this video was filmed in Haiti, it is one of the poorest nations. Those people live off a dollar a day over there.

God bless,
Laura

P.S.: Please feel free to post my message above and the link to this song on your blog.

Update on Daniel from Laura

Daniel got his PICC Line out on Wed. March 5. He had a seizure right there in the doctors office after she pulled it out. Daniel had three seizures on this day and the third seizure was so bad at 8:00 p.m. at night that I gave Daniel his Diastat (rectal valium) to stop the seizure. Daniel has good days and bad days. I count it all as a blessing from God because Daniel is such a beautiful gift from God. Daniel's heart is so pure, Daniel is fearfully and wonderfully made by God.

I am truly blessed that we have had so many people praying for little Daniel and our family. Everyone's prayers have helped to sustain us and have given us so much hope and encouragement to know that we have so many brothers and sisters in Christ Jesus praying for us.

It is only by the grace of God that any of us can get through it all whatever it is that each one of us is going through.

As my dear prayer warrior sister in Christ (Jerri Phillips) said after she left her doctors office pertaining to her heart condition: "and I left his office with the smell of dust and rubble in my nose." "Jericho was down".

Hugs to all my brothers and sisters in Christ Jesus.

Laura

Daniel Update and PICC Line Removed

This morning Daniel had his PICC line removed. Right after they took it out Daniel had his second grand mal seizure of the day and had a third seizure this evening. Laura said they are discussing other options for medical treatment with the doctors. As soon as she has more info I will share, but in the mean time, please keep Daniel and his family in your prayers.

Mini Daniel Update

I called to talk to Laura tonight and one of her older boys answered the phone and said she couldn't come to the phone now because Daniel pulled at his PICC line and the home health nurse was there checking out the situation. Please keep them in your prayers.

This morning in church Laura testified to God's goodness and praised the Lord that Daniel had three days with no seizures.

Daniel Update and Video

Laura has been taking care of Daniel and his PICC line from home since the 21st, but I'm sure it seems much longer to Laura who manages his care and his PICC line three times a day. Each time she does an infusion of his antibiotics the process takes an hour - it's a full time job for Laura. Of course Mark and their other sons help as well. Below is some video of the PICC line process.
*Note* Music will play for about two minutes before the video starts.


Daniel continues to have seizures on a regular basis up to three to four times a week. Laura gives him Valium if he has a grand mal for five minutes as soon as the medication is administered the seizure stops. They will see the surgeon on Thursday to check the incision and make the infection is clearing up adequately. Laura is planning also to meet with Daniel's neurologist to discuss other medical options.

Daniel is talking more. He continuously says, "Your welcome, bye bye have a good night." Laura laughed when she told me and said that he is repeating what the Walmart clerk says when they leave.

Please continue to pray for Mark, Laura, Daniel and the whole family as they continue Daniel's treatment at home.

Daniel is Home!

Daniel was discharged from the hospital yesterday (Thursday) afternoon. Laura had a three hour meeting with the home health nurse yesterday as he went through all of the initial information and trained her how to care for the PICC line and administer Daniel's antibiotic. Laura has to give Daniel his IV antibiotics every eight hours.

Its been a long month for Laura and the whole family. Please continue to pray for them. Pray that Laura is able to get the rest that she needs so she can continue caring for her family and pray God's will in the whole situation!

Thank you so much to all who have shared their love, concern and prayers with this amazing family!

Daniel has his PICC Line

I spoke with Laura a while ago and she said that Daniel got his PICC line with no complications and he is playing happily now. Laura will be instructed on the use and care of the PICC line and hopefully they will all be home tomorrow. A home health nurse will meet them at home and give more direction. The doctors said that Laura's quick identification of the area on his head that is infected kept him from getting a bone infection and/or a brain infection.

Daniel is getting a PICC Line

I just spoke with Mark and Laura and they said that Daniel has to get a PICC line (Peripherally Inserted Central Catheter) tomorrow morning at 9am. They are going to put him under anesthesia to place it. For those of you who are not familiar with a PICC line - it is a flexible tube designed to provide direct access to the bloodstream and can be used for many medical procedures. Daniel will be in the hospital until Thursday or Friday. They anticipate that Daniel will need IV antibiotics from home for about two weeks. A home health nurse will instruct Laura on how to administer the antibiotics and flush his line with Heparin to make sure there are no clots in the line. The medical team is insisting on IV antibiotics to ensure that Daniel doesn't get a brain infection or any kind of infection in the bone.

Please continue praying for Mark, Laura, Daniel and the rest of the family.

Update from Mark and Laura re: Daniel

We called Children's Neuro dept. yesterday, because there was swelling and some blood oozing out of Daniels incision, they said bring him in immediately. Once there, they confirmed an infection and admitted him. They did a CT scan of the head at 1:00 this morning, with the intention of surgically opening the incision back up today, cleaning it out and re-stitching it back up. Providentially, the CT scan showed only a superficial infection which can be treated by antibiotics, and LORD willing, he will be released sometime today once the culture that identifies what type of bacteria we're dealing with, has been returned from the lab.

Continue to pray that God will indeed receive all the glory in all things.
Mark
~~~~
I spoke with Laura this morning and she said that Daniel is on two IV full-spectrum antibiotics until the doctors know what is causing the infection and then they can use the specific antibiotic that works best against it.

Daniel is at the Hospital

I just called to check up on Daniel and found out that Mark and Laura took Daniel about one and a half hours ago to the hospital because he has some kind of bump on his incision site. As I get more info I will continue to update.

Please keep Daniel, his family and medical personnel in your prayers as they figure out what to do for Daniel.

For Mark and Laura:
"Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the LORD: He alone is my refuge, my place of safety; He is my God, and I trust Him. For He will rescue you from every trap and protect you from deadly disease. He will cover you with His feathers. He will shelter you with His wings. His faithful promises are your armor and protection."
~ Psalm 91:1-4 NLT

Daniel Update

Laura came to church this morning while Mark stayed home with Daniel. He had another seizure early this morning, but Mark and Laura are handling it with grace and peace. This morning in Sunday School Laura testified to standing firm in Jesus. Daniel is their treasure and they are thankful that God has blessed their lives with him - as we all are.

More updates to come. Your continued prayers are appreciated!

Friday's Daniel Update

I just spoke with Laura (her phone was out of order yesterday) and she will be giving more of an update later today. They are on the way to the doctor's office with Daniel right now. He had another seizure very early yesterday morning and has broken out with hives from his new medication for seizures.

Laura wants to assure everyone that she and Mark are standing firm in the Lord regardless of what is going on around them and they greatly appreciate your ongoing love and prayers!

Thank you so much!

Daniel's Story - Bring the Rain

Laura sang Bring the Rain by Mercy Me on the Sunday before Daniel's surgery while this video played on the screen. It was a beautiful testimony of God's love.

Daniel Needs Prayer

Please keep Daniel in your prayers. He had a grand mal seizure early this morning. The surgeon said that there was a 15 % chance that he could have more seizures after the surgery. Please pray... more info to come!

Daniel Was in Church Today!

What a surprise we had this morning when Daniel and Laura walked into church together! He looked terrific (as did Laura)! I heard someone saying, "Someone forgot to tell Daniel that he just had surgery." He looked happy and we give God the glory.

Please continue to keep Daniel, Mark and Laura, Nathan and Timothy in your prayers as they continue the rehabilitation process. The whole family works so well together as they love and support each other and Daniel beautifully. They are an example of Jesus in action.

Daniel is HOME!

I spoke with Laura today and she wanted me to let everyone know that Daniel surprised everyone and improved so much that he was able to SKIP going to a rehabilitation center and go straight home. When Laura called Tuesday night she was absolutely thrilled that Daniel sat up on his own for the first time and grabbed her hand and started walking around the room. Since he regained his strength and his balance his doctor cleared him to go home last night. They got home around 9pm and ten minutes after their arrival Daniel's new hospital bed was delivered.

Daniel Home in Bed

Laura said that Daniel has had a good day today and has been directing his own physical therapy program :) and resting a lot. He will have physical and occupational therapy with professionals and other medical treatments to come, but he is doing fabulous!

Mark and Laura want to thank each of you for your continued prayer support during this time! They thank God for the miracles HE has given on Daniel's behalf.

Daniel

Daniel's Doctor checking in on him

Keep Daniel in Your Prayers

I just spoke with Daniel's dad and he said that Daniel isn't doing as well as the doctors had hoped he would be at this point. They think he is having a difficult time regaining his strength because of the fact that he was such a tiny preemie (born at 22 weeks gestation - 1.4 lbs) and because of his blindness. His surgeon believes some of the problems are due to the fact that he is blind and regaining his balance is more difficult than for a sighted person.

Daniel on his birthday 7-6-97

He did physical therapy twice and occupational therapy once today. He had little energy and was easily exhausted. His medical team is discussing options right now. They are trying to find a rehabilitation center in the Washington DC metro area that will accept his insurance. They want him to have specialized rehabilitation for a couple weeks before returning home.



He has been laughing and playing with his toys. He is able to keep his eyes open, but doesn’t have much strength to do much of anything else after physical therapy. He was wiped out. Daniel’s mom shared that Daniel tried to flip the shower cap off his head today while she was washing his incision and his head. She also gave him a bath in his bed tonight.

It’s challenging for the family to be separated during this time. Please continue to keep Daniel and his family in your prayers as he continues his recovery and rehabilitation.

*10:15 pm Update*

Laura, Daniel's mom called me tonight in tears, tears of joy. She said she wanted to tell me about a miracle! Earlier today Daniel wasn’t even able to hold his head up and at 9:20 pm Daniel sat up in the bed and held his mom’s hand and started walking around the room. Praise the Lord! Please keep praying for Daniel because your prayers are working!

Monday's Update on Daniel

Mark, said, "Laura helped Daniel out of bed for a little while today, he is so weak, he was having trouble holding his head up. He will be starting PT tomorrow. There is even some talk of him coming home tomorrow night, or Weds. morning. Its just talk right now though. He was laughing and said his first word today, to Dr. Yaun..."toy"."



Thank you for your ongoing prayers for Daniel, his doctors and his family.