On Christmas Eve Jonah was sick. As we were going to bed Jonah went into a seizure. It lasted and hour and he ended up in the ICU. We spent 5 days in the hospital and a week after we got out, he had a second seizure that lasted 25 min. This is very scary for us and we do not know why this is starting.
We have started Jonah on some anti-seizure meds that are suppose to keep him from going into a seizure.
Above everything we are asking for Gods complete healing over Jonah!
The last scan showed that the tumor was still stable and not growing!
Cannabis oil appears to be working. Radiologist said tumor is stable. We can see it is a tad smaller and they observed that the tumor looks “different”. Huge praise! We will continue down this road making some minor changes to the oil ratios bringing in more THC to kill the tumor more.Thanks for your prayers and support!
The whiter the tumor the more blood flow. Last scan the tumor had more white vs the new scan which is telling us that the blood flow is not getting to the tumor! More good news.
Also, over the past several weeks we have been seeing some great improvement in Jonahs walking and shaking which is also great news!
We are so thankful for all of the support we have received! We thank you for your continued prayers!
A lot has happened since we found out about Jonahs tumor. We moved back to Colorado after Doctors at Boston Childrens gave us a 3 month window to watch and see if the tumor was going to do anything. We wanted to get Jonah on cannabis oil to see if that would reduce the tumor before we ever moved forward with doing chemo since it is SO bad for you, especially a 2 year old! Jonah has been on cannabis oil for about a month and a half. He is due to get a scan in the next few weeks to see what the tumor is doing and if it has shrunk at all. As always we continue to ask for your prayers for Jonahs feel healing! We will never give up on the fact that God still performs miracles!
So, we have been at it the last two years with Jonah. Praying for him. loving him, playing with him. Through a long course of events, we move to Massachusetts and we found another neurosurgeon for Jonah. We had to do a rapid MRI for a baseline of his brain since he was at a new hospital. They did the scan and found something off. They did a full MRI and confirmed that Jonah appears to have a low grade glioma. Which is a brain tumor. We have had a few appointments with docs and they are saying thay they want to go in a “de-bulk” the tumor and after do some chemo treatment. We are looking into alternative therapy. But first and foremost we praying that God will heal Jonah from this tumor.Here is our prayer for Jonah : Payer for my son today. Please pray this with me. Heavenly Father, we praise you and thank you for bringing Jonah this far. For blessing us with his compassionate, loving and caring spirit. We thank you for how smart he is, and even more, we thank you for how much he sees you and his faith in you at such a young age! We lift him up to you today and pray for your intercession. We command the tumor in his brain to dissolve. In Jesus Christ Name. Amen
Thank you for all of your support and prayer for Jonah!!!!
It seems like just yesterday my husband and I were starting this blog to inform family and friends on how our little guy was doing. I can’t believe it’s been two years! As Jonah is climbing all over me at this very moment I am reminded of how unbelievably blessed we are with this little boy. Quick update. Jonah had another malfunction a year after his last one malfunctioned, it was weird because we were a few days shy of when his last one was. We are so unbelievably thankful for his NSG She is amazing and takes very good care of our little boy. Anyhoo we haven’t had anything else go wrong ( so far) Jonah is talking up a storm and has been for a long time. He is so funny and smart and no one could ever tell that he has Hydrocephalus. HE loves to swim and go to the park he still calls the swing “fwing” it melts my heart! He’s also doing really well with baby sign language but after he learns to say the word he really doesn’t use the sign anymore. We are so blessed that he continues to excel at every level. God truly is who he says he is, and he keeps his promises!
About a year ago my husband and I contacted over 100 churches across our nation to have them pray for our unborn son Jonah. Soon the word was spread( thanks to the internet) and we had people in over 13 countries praying for our little man. He was diagnosed with severe Hydrocephalus. The Doctor made his condition sound like a death sentence. They said if anything the best scenario for his life would be that he would have slight physical and mental disabilities. The day of his birth I was so nervous and excited but most of all scared. I just kept clinging to the words God gave me which was ‘ I kept the Jonah of old safe in the whale and I will keep your Jonah safe today’ . At about 8:34 a year ago today our son Jonah was born. His cry was the most beautiful sound I had ever heard, we were so worried he wouldn’t cry and we wouldn’t be able to keep him. He weighed 6 lbs 7 oz and was 5 weeks early!! ( big boy) He quickly went off to surgery to get his shunt placed. he was in the nicu for a month (mostly because he wouldn’t eat on his own) and then we brought him home.
Now a year later he has only had to have one shunt revision and he has NO disabilities whatsoever!!! he is progressing the way any one year old should be. He actually took his first steps a few days ago and loves to clap and wave hi! Jonah is my reminder that God is good and he is who he says he is. I look at this kid every day and I’m amazed at Gods mercy and grace. I don’t know why but he chose to heal Jonah and let us borrow him for a little while longer. Our God is still in the business of miracles! I have living proof laying right next to me. And his name is Jonah. Happy birthday to my sweet little boy!!!!!!
Jonah is a trooper! We are so thankful for Jonah and the the huge blessing he is in our life. His surgery went well and everything is looking good. Fortunately the only thing that was wrong was the catheter not working, and that is now fixed. We still have to be cautious that his shunt doesn’t get infected after the surgery so Jonah still needs prayer! : ) The average shunt revision is four every ten years.
Our NS told us to basically get use to this, and that this is going to be our life. She wants us to be prepared. But it is still very scary. Doing any kind of brain surgery is never just a routine procedure. I don’t know if this will ever get any easier for us to wrap our heads around. But I do know that we will continue to invite God into our lives during the good times and the hard times. God doesn’t promise a life with out pain and hardship but He does promise to be with us, to walk alongside of us during these difficult times. God also calls us to be him in the flesh by offering support and love to the people around us. And we want to thank all the people who have been there for us and walked alongside of us during all of this. For showing Jesus to us and reminding us that he is right here with us.
This is going to be a lifelong journey and we will continue to reach out and ask for prayers for Jonah and our family. But we want to share our prayers and support as well. We will be opening prayforjonah.com up for others with needs for support and prayer. We get a decent amount of traffic from people searching on the internet for prayer and support and people also looking for a need to pray about.
Surgery went well! The catheter that goes into the brain from the shunt wasn’t working. Everything else looks good. They replaced the catheter and Jonah is doing great! 2 Brain surgeries in your first 7 months of life has to be a little rough. Jonah is a trooper. Thank you Jesus for Jonah and the blessing he is to us! Thank you to everyone who lifted Jonah up in prayer. We are extremely blessed to be surrounded by such great people.
Jonah is still coming out of anesthesia and can still use prayer. His is sitting in his moms arms and you can see the peace on his face.
Last night was a really long night! Jonah went to sleep around 9am and woke up every 30 minutes or less crying. We thought it could be him teething and or a belly ache but his eyes also seem to be a little lazy. It is possible that it could be his shunt. The more we talked about it this morning, we decided that were better to play it safe and talk to the NS. She wants us to bring him in for a scan. The other problem is that Jonahs Neurosurgeon is on bed rest because she is due to have a baby and she has high blood pressure. We really like her and we don’t want anyone else doing a shunt revision besides her.
All that to say this is all a little unnerving for us and we would really appreciate your prayers!! So would Jonah!
Wow! We are so blessed! We went to the doctors for Jonahs CT scan today and the appointment could not have been better! The day Jonah was born, they did an ultra sound and saw that there was no brain mass because of the fluid build up. Well today, the CT scan showed a fully developed brain. We can not express how grateful we are for everyone’s prayer and support! We had thousands of people praying for Jonah from all over the world and we know that God has heard our prayer and made our son whole! Thank you Jesus!
Love, Patrick and Kelsey!
The pictures below are not from Jonah, but they show exactly the difference in what Jonahs brain looked like the day he was born, and today! If you look at the ultra sound you can see how large to ventricles are becasue of the amount of fluid in them, which means the fluid is there and not the brain.
Our yet to be born Son named Jonah is suffering from extra fliud in his brain. There are multiple things that can be causing this. There are alot of un answered questions and uncertainty if he will stay alive. Alot of things are pointing in the direction of Hydrocephaly which would mean he will need a permanent shunt put in which will drain the fluid from his brain. This would be a good case scenario. We are asking as many people as we can to pray for Jonah to be healed. There is power in numbers and in prayer. We believe that God can heal him. So We ask you to join is in daily prayer that Jonah will be healed by the power of Jesus Christ!
Ask, Seek, Knock
7 “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8 For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.
We will keep adding updates daily and we thank you so much for your support!