We don't know what God has planned for us and baby Knox but we prayed for a miraculous healing and we asked for extra strength and grace to fulfill His will each day.
I asked the neurologists in Phoenix if they've had a lot of cases like Knox------their answer was a little surprising. They've never seen parents go forward with a child in this condition. Knox is severe. The doctors don't have any advice.... just time. No one knows what could and may happen over time. At the end of a very good appointment, all that could be said was, "I see your faith is very important to you. Would it be helpful for us to all pray together?" It was the sweetest gesture that could have been offered. The prayer was real and spiritual and offered up in Jesus' name. I'm thankful for that neurologist. Even though we don't have any medical hope of recovery for Knox, we know the Great Physician and He's a good good Father. Knox's time may come... Most doctors have stated they believe an infection will eventually take him. We don't know what the future holds-but we are clinging to the One who holds the future⚓
It's been a long time!! I've missed being able to post an update, but things have been so busy around here lately and I think my energy has also been low. But this update is totally sponsored by the delicious Starbucks coffee my husband just brought home to me! Hehe :)
I finished up the book A Path Through Suffering. It was tremendous. I'm going to start another one by Elisabeth Elliot and then I may reread this one again! Yes, it's that good! Here's some things I thought important enough to highlight in the last few chapters...
*The chance for each one of us to "die" is always given. With exquisite delicacy He prepares us in mysterious ways and teaches us how to receive our daily deaths, whether they be small ones such as the cutting remark, the social slight, the unwelcome task, or the coming to pass of our worst fear.
*You will find peace only in the cross. Take it all to the cross and leave it there. The cross has become my home, my rest, my shelter, my refuge.
*If we were given all we wanted here, our hearts would settle for this world rather than the next. Faith in God means obedience with no thought of consequences. It means not only do or die but sometimes do and die.
*If I am going to trust God for my future then I must rust His sovereignty over my past. He could have prevented it. He allowed it to happen. He makes no mistakes. He hath done ALL things well.
*This life is nothing but a vapor. The Word tells us to focus upward, put off the old man, put on th new and go. A glad acceptance of hard things opens the way for glory.
*The CROSS - It takes the weak and makes them strong. It takes our sin and bestows Christ's righteousness. Out of bondage we are made free. Darkness is overcome by light. Loss turns into gain.
Good stuff, right?! Now you don't have to read the book. LOL!
I've been able to spend time with my Mom. We went to a ladies Bible study at church and it was a great time.I've had time to cuddle and massage my sweet baby Knox. And I took the three older kids to church on Sunday morning. :)
Knox has had a rough couple of weeks. It was obvious he was sick and that his body wasn't feeling well. Carl and I really felt like the antibiotic he was on wasnt helping his infection at all. I knew he had to be doing worse and not better because his coloring was always off, he wasn't doing hardly any self-intiated breathing, he continued to have a lot of colored drainage around his eyes and trach. Then on Monday he had a very high fever. He didn't take long to get the fever down because he has a hard time regulating his temp but it was still just obvious the infection was still strong in his body. We went to the ER in town with Knox as recommended by our pediatrician. We thought we would be heading back to Vegas and the children's hopsital because our town isn't equipped to care for a baby like Knox.
This was our first time out with Knox. We used the double stroller we purchased and he laid in the back part and his machines were in the surrounding parts and seat. We basically just put him and his stroller set up straight into our van. It worked - no alarms. Yay! We do have a car seat that is a lay down seat that someone purchased and it's being sent to us (Thank you!!!). We will be using that car seat for our trip to Phoenix on 2/4 because it turns out we were misinformed and medical transport in the form of an ambulance is not provided! But after having to get him to the ER in a pinch, we feel more comfortable we can make it to Phoenix!
Knox seems to be doing a lot better on this new stronger antibiotic. Our ER talked on the phone with the Doctor in Vegas and everyone was in agreement that we could administer this antibiotic at home instead of having Knox sit in a hopsital (open to more infections) for days. He hasn't had a fever again, his drainage seems to be less, and he is having a lot more self-intiated breating! I love seeing that blue dot on the ventilator :) When I hold him at night and rub his back he seems to do a lot of breathing on his own :)
I wouldn't say anything new has occured with Knox. He is still doing a lot of those very slight movements and seemingl in response to something we are doing to him (Suctioning, cleaning areas, diaper change, etc.). The slight movements are sometimes his head tilting to one side, his pointer finger moving up and down, a big self-intiated breath. I check his eyes everyday and sometimes his pupils are big. Sometimes they are small. They don't necessarily respond or change when his lids are lifted.
On 2/4 we have 3 appointments scheduled. Heart doc, lung doc and his feeding tube surgery for the mickey button. I think we will ask for him to also see a neuro doc in the future....
The ball has been moving for certain health care programs available here in our town for Knox. We are getting things approved and it's a blessing to have some sort of help. One I'm very excited about is physical therapy! :)
Carl's family is moving here from KS to be of help and support. We are so thankful! My parents also live in town. Knox is a blessed little guy to have so many loving people. Everyone pitching in helps lighten the load. Some days are SO hard. Some days my sadness and pain is overwhelming that I can hardly function. Pray for Carl's family as they are making the transition and still need a lot of things to work out so they can get here and get settled.
Once again this is another long update but it's so long since I've been able to sit down and think about all that has gone on. I'm praying everyday. Making my humble pleas to our Good Heavenly Father. He is good! I'm so in love with Him. I know He will carry us through this and we hope to bring honor and glory to His name always.
Quick thoughts before I go:
*Carl is amazing! He cooks, cleans, takes care of Knox, loves on the other kids,and takes care of me in my craziness! ;)
*And my mom is the best. She is cooking us supper tonight :)
We made it home yesterday, and mommy and daddy have been organizing supplies and setting up my corner of the living room ever since.
I had a great night, but struggled to keep my levels of oxygen right this morning. Mommy and daddy had to execute an impromptu trach change, which was an adventure.
All good now, getting ready for Christmas Eve fun with family.
Keep praying, we are all adjusting to life as it is now, all the different needs and items needed to provide care.
Enjoy your time with family and friends today!!!
Oh, dear Lord. Thank you for this beautiful family. Lord, my heart weeps and aches for the pain and worry of this family, I lift Prestyn up to you. Lord, We ask for healing for this little guy. I ask that you give his little body strength to heal, bring him comfort, and give the medical team to provide life producing care. Lord, we know this boy will be healed in one of two ways. You can take the sickness away miraculously and allow him long life here, or You will give him ultimate healing and take him home with You. I'm asking for You to miraculously heal him, and let him be a living testimony to Your healing grace. I ask You to wrap Your loving arms around the family and let them feel your presence. Bring them comfort, Lord, in whatever Your will is. Bring them strength, courage, and wisdom in these difficult days. Hold them, Father. Receive and hold their brokenness. Lord, bring others to come alongside them to provided for their needs. Open and soften the hearts of all that they may trust You and have faith in Your eternal love. In the Name of Jesus. Amen!
I dont know the family but the holy spirit told me to lay hands on this precious babys pic and i spoke healing upon his body and peace upon this family and upon the drs treating him,our god is able and i speak healing into existence and this child will grow up in the ways of the lord and will share his mighty and awesome testimony with all he comes in contact with!!i claim it in the mighty and healing name if jesus! ! AMEN
A four year old boy in SC is making national news. When he went to visit Santa he asked for a train and asked Santa to get down on his knees and pray for your little one. I wish I could post his and Santas picture here but I can't. I commend his parents for raising such a wonderful young man and I am so truly heartfelt sorry for your family. May the Lord and the kingdom of heaven watch over your family.
Really wish I could give money but I have a little one on the way so can't really do money but I will pray for u all I hope the baby is ok that's just hart braking hope every thing gose good with baby boy good luck to all come on baby boy u can do it fight for ur life u can do it
Saw the article about prestyne praying for baby Knox as I sit here and hold my 7 month old baby boy and I just can't help but pray and pray that baby Knox makes it to 7 months and on. I just pray in Jesus name that he will be healed of what ever is going on! In Jesus name Amen! Please keep us updated about this precious little sweet heart
Knox family-I would love to send you a card,but I understand if you don't want to give out personal info(address,etc.). If you have a PO Box,or if I can send it to the hospital,or just General Delivery(at the local post office),please let me know. You can message me here or facebook. I'd love to send a card,and maybe some stickers or something for the other kiddos(something to cheer them up a bit). God bless you all...*continually praying* Lisa and family
love and help and healing coming your way through the power of Christ!Amen
God bless you all! I wonder if you have spoken to other specialists? We have a tremendous team of doctors here at The Hospital for Sick Children. We are praying for you all.