So this post is mostly concerning a certain immune system.
Jordan is so brave.
I love that we serve an AMAZING God that we have no doubt could/can/did/will heal Jordan's immune system!
It was three weeks today that he last had his antibody infusion.
He was prayed for so very much. He was anointed and he went forward for immune system healing at Youth Alive.
I'm so proud of him for his courage and faith.
He declared he was healed and he didn't want infusion ever again.
He felt great and never indicated that he even needed his infusion.
His blood test results came back. I got a call from his CHOP Doctor to go over those results. (which I had on speaker for Dave to hear to)
We heard "We want to increase his dosage up from 15 grams a week to 18 grams" (last years weight gain and growth had them needing to up the dosage)
As you can see on the picture above we have G, A, M, Immunoglobulin's (which is the three immune fighters within our uniquely created bodies) G is the only one they can substitute.
The A and M is almost nothing. The G is up in levels because this is the IGG that recives the infusion through Jordan's Sub Q tissue. Without his infusion this one to would be down low like the others. He has little or no fight to fight anything would this level dip as low as the A and M.
I made some phone calls last week.
I researched.
I just could not stand the idea of going against all medical advice. After all he has been so well the last seven years since getting infusion. He was never on any medication since then! Never even a doctor visit for anything other then his yearly CHOP checkups.
I realized that if he gets sick with anything small or large giving infusion will not nessesarily make him well again. I also was aware that he is still considered a child and I'm taking a risk taking him off infusion under the radar of his doctor and specialist at CHOP. (Children's Hospital Of Philly) His shipments were still arriving and they thought we were using them. (remember this is specialty very expensive stuff that can be difficult for some people to get) I would be questioned if I halted the shipments.
What to do!??
I never wanted to squash Jordan's faith that he was healed yet we can't ignore the obvious either. God sent us Doctor's and we have been so thankful that Jordan has been so well with such a great quality of life all these years.
We prayed about it.
I made phone calls to others with children that have this same condition. They advised (from experience) to keep up with his infusion and if we decided to stop for awhile do it along side a family doctor and not blindly.
I made an appointment with our family doctor.
The appointment was today.
It went well.
I took Jordan in and we had a nice long talk with his family doctor. This family doctor can't even order the infusions Jordan gets since it needs to go through a specialist and then to a specialty pharmacy.
He explained everything in depth and went over Jordan's latest blood work with us.
He does not believe that Jordan's body is making very much of its own antibodies at all. (seeing the levels of his other immune levels) He did suggest that he could move our case to a specialist in Lancaster once Jordan is out of the "child" class. (CHOP specializes in children so that is why we were sent there) His doctor said when he turns eighteen he could move his case. He thought then we might be able to get more in depth and be closer to home so they can monitor closely.
For the past few weeks Jordan has been well without infusion. If we were to try to give him a break now is the time of year to do so. Not to much sickness goes on during the summer months. BUT.... He plans to go with Dave to Belize for four days this month yet. Airplanes, Airports and other Countries does not sound like the place to be without to much fighting power.
Today we did infusion again.
Jordan was brave as I know he was so disappointed when those needles went back into his skin! I felt like crying for him.
We will not give up hope. We will continue to believe in healing. I know Jordan has an amazing testimony for the Lord with or without his weekly infusions. I know he is thankful to be well. I know he is brave. I know he knows pain that we don't know. I know he will not give up on one day leaving these infusions behind him. I know he is strong and courageous. He is our family hero.
I want to research and dig for answers concerning his blood tests. I cannot tell on his charts what his body makes on its own and what he gets from infusion. I just know they need his levels to be up above one thousand. We will up the dosage to make up the growth spurt that Jordan has had the past few years so his next shipment will come with more dosage which will take a bit longer to infuse. Right now Jordan can do his infusion from start to finish in about an hour and a half.
He has energy. He has a full time job. He has a great social life. He has a great quality of life. He is not sickly or skinny like the other kids whose moms I talked to this week. He is so BLESSED and he knows it. If you were to meet Jordan anytime anywhere you would not have a clue he has this condition. It does not interfere at all with anything he does (other then taking time every week to relax while he receives infusion) His doctors, pharmacy and insurance company have been good to us. I would just hate to mess that up by doing something against orders.
For now we THANK God once again for health and antibodies to help along keeping Jordan well.
Today Jordan cleaned out an old shed at the shop. It was dusty and his eyes look cloudy tonight and his nose is making noises I don't like. He deals with some allergies like that and its crazy how we take for granted that our immune systems fight the smallest things like even dust...:)
Some things we do here to try to help his body naturally fight...
Jordan has an air purifier and a diffuser in his room. He has his own thermostat and he keeps his room chilly all year round. When walking into his room it feels and smells like an inviting sanctuary! (I may or may not have taken a nap here a time or two...:))
He baths in and we topically apply YL oils most every day. He takes whole food supplements which I trust. Enzymes, Probiotics, Omegas, Calcium are a few rarely skippers he takes daily. He loves pretty much any healthy food... except sprouts, squash and cabbage...:)
(and also not so healthy when he gets away with it...:})
The Beamer Pad is pretty new here and I'm still educating on it. (it has to do with circulation) I have a few day Beamer academy education seminar coming up soon and I hope to learn how to better use this for Jordan.
We have a hyperbaric chamber but Jordan has yet to use it. I hope to be brave enough to put him in there one day because I know it does wonders in oxygenating the body!
You can leave me comments if you want. I'd love to hear what you would do if you had this condition to deal with in your home with your child. I know you'd all have words of wisdom for me and I'd love your feed back.
Sometimes I'm left to wonder what else is out there that could help Jordan's body fight. I have researched medical cannabis and I do read much from TTAC (The Truth About Cancer) but I know I could take more time to dig into education. I do believe God created our bodies to heal themselves if they are given the tools to do so... I'm just not always sure where to start:)
That's all for that....
These beautiful summer days we are so BLESSED to spend time here....
I'm not sure where this thing was back in the days when I basically worshipped the sun! I could spend hour upon hour just laying in it. Those days are over. I no longer enjoy laying out there cooking my skin. An hour or two is plenty for me and then I prefer to have friends to visit with or a good book to read.
Having cousins to share a place like this is every kids dream come true I would think!...:)
The garden is so much fun these days! The days get started with a run and then a visit to the chickens and the garden, We have new baby guinea peeps that are so much fun to watch right now!
Breakfast is whatever veggies get gathered from the garden sauteed with a few eggs thrown on top...
Its the best time of the year for eating healthy I think... Except when we are at parties or on vacation...:)
Look who is enjoying this summer to... She loves having the Little's around all the time!
We have gotten used to Jazlyn around the house and she is well behaved with better house manners.
Dave is in Texas. Today was a day spent looking into Zook Cabin's opportunity. Tomorrow is another packed day with Dave leading a group of investors as they get education on his latest investment opportunity... Coal!..:)
I'm sure I'll hear more about coal in the days ahead...:)
Tonight we are tired. We enjoyed this lovely day to the fullest!
The school packets arrived in the mail and I could have croaked over them! The school schedule is not something we even want to think about yet but we did talk about it a bit and I love that Jenika completed the summer workbook that got sent home and Javon is still working on his. We do visit the library and reading is something they do most every day but things like piano and math are getting neglected totally. School will be a jolt for this clan the way its looking these days!...:)
Summer is the best time of the year for sure!!
The dry weather has the yard in no need of much maintenance. It feels nice to have this break in July after the huge growing season earlier it felt like we could never keep after with the mowing and weeds! The journey in seasons sure keeps life interesting here!
Good Night from the Zook corner...
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