Today our friend Lawi had his follow-up blood test. Ten days have passed since his successful surgery and he is doing very well. His beautiful mother and I decided that Lawi looks a little bit like a delicious marshmallow.
He passed the blood-test very well and was a real brave-heart. Now we are waiting for the results. Let’s hope that it will be positive!
Welcome back to our Shevet home
It has been just over a week since Lawi was in surgery. A difficult day for his mum.
Her patience and endurance in the hospital was rewarded today with the news that Lawi could come home to Jaffa. This is lovely news. He is on just one medication, and no special instructions for his feeding which lightens the aftercare burden for his mother.
Thank God for a good outcome for Lawi, and please pray that he continues to heal in the following weeks.
God is with Lawi.
We pray that God would bless Lawi and his mother with peace and strength. It must be so difficult not understanding the language, or not knowing what all the various machines and numbers on the machines mean. Today we tried to explain Lawi’s condition. Lawi was weaned off of mechanical ventilation, and is now receiving oxygen via nasal cannula. His blood pressure is still low, but he is receiving medication for this. Lawi is slowly improving, and praise God he does not have fluid around his lungs.
We pray that Lawi’s mom would find comfort in the words in Isaiah 41:10 which say, “fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”
Step by step for little Lawi
The doctors were hoping to wean Lawi from mechanical ventilation today, as he is on a low amount of respiratory support. He was slowly waking up and off of the sedation medications, but they wanted to wait a little bit longer for him to be fully awake prior to attempting an extuabtion.
It was translated to the mother that his blood pressure had decreased throughout the day, but they were able to manage this by increasing blood-pressure support medications. Please pray for Lawi and his sweet mother as they rest and recover.
Lawi headed home to Shevet House
After Lawi had his cath last week, he has finally been discharged back to Jaffa today! His beautiful mum was as patient and gentle as always. I really love spending time with him and his mother for this reason: they are always calm and loving. Everyone who sees Lawi always comments, ‘He’s so beautiful!’, and it is true! Both he and his mother are beautiful inside and out!
They are a blessing. Please pray for a surgery date soon this sweet boy.
Lawi is still recovering from his diagnostic catheterization. He is currently receiving a small amount of oxygen support. Today he was transferred to another unit. His mother has been kindly and sacrificially caring for Lawi. We pray that Lawi’s mother would be able to rest, and to rest in the comfort of knowing that God is caring for Lawi.
Little Lawi's catheterization day
Today was catheterization day for Lawi. As we came to the hospital we looked for him in his room, but they said he had been picked up three hours ago. Quickly we went to the ICU where we saw a room full of doctors and nurses standing around Lawi’s bed.
Shlomi (a very nice nurse) greeted us and told us a little bit about Lawi’s condition. Lawi’s mum was very quiet and I had the feeling she didn’t really know what was going on. Dr. Sharon talked to us and explained that Lawi’s pulmonary blood pressure was very high during the cath so they had to give him oxygen. It was a lot to take for him and they had to resuscitate him. We were quite shocked but she took all the jolt out of the situation by saying, “He has nine lives. He is awake and cute.“
I was thinking he is cute but no, he doesn’t have nine lives. However, he does have a loving and caring Father in heaven. God was with him during the whole cath and also will be with him now. We gave them some space and I came back to see them in the afternoon.
I was delighted by his well-being. Lawi was awake and smiling. Shlomi gave him something to drink and explained to Lawi’s mother how well he is doing. Again and again the nurse said to me how cute Lawi is. I love to experience the love the staff give to our Shevet children and how much they care for them. Shlomi explained me that it is very important after a cath to check the child’s blood pressure and the skin color. As you can see for yourself his skin looks very good.
I praise God for His presence in the cath and for the amazing staff he gave to support Lawi. I pray that Lawi and his mom can more and more experience God‘s Love and that Lawi will recover well from everything.
Admitted for catheterization
This morning we received the news that Lawi was scheduled for a diagnostic catheterization tomorrow, to test the different pressures in his heart and lungs prior to surgery. We were as surprised as it appears Lawi is in the picture below, but we were also very thankful and joyful for this news. Lawi’s mom was so patient in waiting for the room to be prepared. Many hours later, at last, Lawi was admitted to the hospital. Please pray for Lawi and his mother as they start to prepare for this next step.
Friends from the other side of the world
The smallest resident of our home, Mr Lawi, had some special visitors today! Here he is with his mum, having a cuddle with Nicole with her three beautiful children. Nicole’s parents, David and Susan, live in the USA. They are ‘local leaders’ for Lawi.
Like Lawi’s mum, they are also parents to a son with Down Syndrome, so little Lawi has captured their heart. Their son, Nicole’s brother, is called Seth. He is an adult now. Nicole shared the story of how Seth also needed a heart surgery when he was a baby. She brought some family photos to look at together and today many more pictures were taken, as if Lawi’s story is like another chapter in the story of Seth’s heart surgery.
First day at the hospital
Sweet Lawi had his first assessment at the hospital today. He was dressed to impress in a beautiful white hat and fluffy white coat as well. He has just arrived from Kurdistan where his mum tells us it’s snowing!
He was chilled out the whole day and here he is relaxing during the echo….
The doctor explained that it is clear to see that he needs to have a surgery to repair his AV canal. But first it needs to be decided whether or not he needs to have a catheterizaton beforehand to check the pulmonary pressure, which is high. So Lawi’s case will be discussed at the surgical conference with the rest of the doctors.
It was nice also that during the waiting time, an Israeli couple recognized their Kurdish language being spoken and asked where these families were from. The gentleman told us that both of his grandparents were goldsmiths from Kurdistan, and were from Erbil and Kirkuk. They were very interested in the treatments Lawi and the other Kurdish children were having here, and warmly welcomed them.
Please pray for Lawi and his mum to feel settled and at home here with us and the other families in Jaffa.
Tonight was the arrival at Ben Gurion Airport here in Israel, of seven-month old Lawi from Kurdistan. Lawi is a beautiful baby with down Syndrome. He and his mother appeared to be quite intimidated when they arrived, but they all arrived safely and with all of their luggage. Here they both are seated in center.
Upon arriving at the house, they will have an opportunity to rest before their checkups tomorrow at the hospital.
To Israel while there is still time
Baby Lawi was born with Down syndrome and the complete AV canal heart defect. This problem can be surgically repaired to allow for a normal development and life span, if it is done at the appropriate time, at about the age of six months. Any significant delay beyond this may leave a child inoperable and with a shortened life span.
Lawi turned six months of age at the start of January. The surgery he needs is not available in his home country of Iraq, but yesterday his visa to Israel was approved, where he has been accepted for surgery at the Sheba Medical Center. We are praying and working to get him to Israel as soon as possible.