Sorry to all of Deklyn's fans! I know it has been awhile since my last post, but to be honest there hasn't been much going on until just recently! I'm going to be completely honest, this last little while I had been losing touch with what I believed in. I was still believing for Deklyn's healing but I kind of lost the drive I had to see it happen soon. Being in a hospital environment can really put a toll on anybody's faith, and you hear so many negative things, no matter how much I believed things would one day get better after hearing all the negatives it went from believing what the bible says and nothing else, to believing what the bible says can happen but who knows if it will. Over the past few months I realized I was not a happy person. I may look happy and sound happy, and yes I wasn't overall un-happy but mostly I was quite mad inside. Mad that this could happen to us, to our baby. Mad that it didn't seem to matter how much faith I had my baby was still born with this disease and to make matters worse he's been in the hospital much longer than we believed he'd ever be. Now, I really don't why these things I've prayed and believed for haven't happened but I know I haven't been doing things exactly right. I've believed with all my heart (or so I thought) that Deklyn would be healed and then in the back of my mind I'd say, "but that's what you said before and were still here". I don't have all the answers, no one does, but I know I need to take a better approach. I need to remember Gods promises to us, I need to stop lowering my expectations, and I need to be happy. I've found a few verses that I'm standing on in prayer for Deklyn, those of you who are praying for Deklyn I'd like to ask you to use these verses as well.
"Have faith in God. For assuredly, I say to you, whoever says to this mountain, 'be removed and be cast into the sea' and dose not doubt in his heart, but believes that those things he says will come to pass, he will have whatever he says. Therefore I say to you, whatever things you ask when you pray, believe that you received them, and you will have them" Mark 11:22-24
Then they cried to the Lord in their trouble, and he saved them from their distress. He sent forth his word and healed them; he rescued them from the grave. Let them give thanks to the Lord for his unfailing love and his wonderful deeds for men" Psalm 107: 19-21
Then they cried to the Lord in their trouble, and he saved them from their distress. He sent forth his word and healed them; he rescued them from the grave. Let them give thanks to the Lord for his unfailing love and his wonderful deeds for men" Psalm 107: 19-21
"Praise the Lord, O my soul, and forget not all his benefits -- who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion," Psalm 103:2-4
"Surely He has borne our griefs and carried our sorrows; Yet we esteemed him stricken, smitten by God, and afflicted. But He was wounded for our Transgressions, He was bruised for our iniquities; The chastisement for our peace was upon him, and by His stripes we are healed."
Isaiah 53:4-5
I know there are many more wonderful healing verses but I thought this was good for now!
Now back to Deklyn, he is growing and growing! He really is such an amazing little boy. He has so many reason to cry and be upset and he is almost always happy and content! This week though was a different case, to be quite honest I thought we might lose our baby. For some reason we had been having difficultly suctioning Deklyn for awhile now, and suddenly he was needing a lot more oxygen than normal. Normal for him would be anywhere from 25-32% but he was on 100% and still not doing well. He didn't look sick and that was what confused me the most. For almost the whole day Nurses and Respiratory Therapists were around his bed trying to figure out what was going on. Just the day before I had got some yellow sections out of him and they had also found he had 95% lung collapse on the right side. I suggested a test where they take secretions and see if anything is growing in them. Usually they don't unless the baby seems sick, or has a fever but they did it any ways for Deklyn which was so good they did because it came back growing an infection. So he started antibiotics, that was just one piece of the puzzle. I also asked if they could do a trach change because it seemed so strange we couldn't suction him properly, they did and found out the trach he had in wasn't right for him. His trachs need a coil in them because his trachea is floppy and this one did not have a coil and eventually it was collapsing on its self, this was the 2nd and finally piece of the puzzle! They did another x-ray and found he only had 5% collapse and he is acting much more like Deklyn. Of course we are still dealing with the infection but he is needing much less oxygen and is so much happier. Praise God!
We got to do some new fun things with Deklyn like put him in a stoller that works with the portable ventilator he will get when he's big enough, sit him up in a big chair that will help him learn how to support himself and just get a different view of things and we also got to start playing on the floor which was a blast! Deklyn was so cute wiggling around! We would lay him on his side and I'd go sit behind him and call him and try to get his attention and he would roll back onto his back to find me, it was so awesome!! So that is really just about it! Another thing we could really use some prayer for, my husband would like to join us for a month or 2 this winter to be with us for christmas and Deklyn's 1st birthday but we just can't afford for him not to work so he's looking for a job here in the city for those 2 months. Its going to be so awesome to have him here with us, but if you could just pray and believe with us that he'll get a great job for the short time he needs it that would be awesome! Thank you guys for all your support, I'm just amazed with everything that has been done for us and all the kind words and encouragement We've needed it every step of the way! Now we just need to keep believing, I really don't care if people think I'm crazy, but I know my son will be completely healed and God is going to get all the glory. He's got an amazing plan for my little boys life but we need to pray and believe. There is no reason why we can't get an amazing miracle, ones like we read in the bible. I know I will have my son home with out a ventilator in the name of Jesus.
Here is a song that has really encouraged me lately, weather you are going through something or not it is an amazing song! Give it a listen!
http://www.youtube.com/watch?v=722zPX1npcA&ob=av2e
Here is a song that has really encouraged me lately, weather you are going through something or not it is an amazing song! Give it a listen!
http://www.youtube.com/watch?v=722zPX1npcA&ob=av2e
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that is beautiful inspiration Sonje! I will definitely be adding to the many prayers streaming up to our healer & savior! -Kailey
ReplyDeleteI appreciate your honesty and sharing on what you want prayer for. We will definitely be praying the verses you shared. heard that Sheridan was going to join you. Praying that he will find a job for a couple of months.
ReplyDeleteI am finding your blog for the first time and am an utter mess in front of my computer. I just said goodbye to my second baby due to lethal hypophosphatasia. I got to 22 weeks with my first angel Ana and lost her this past May. Drs. thought is was campomelic dysplasia and a spontaneous case. We got pregnant again 2-3 months after losing Ana only to find out at 12 weeks that the baby's bones weren't developing. Again we were told there was no chance of survival. We are waiting for genetic test results as well as the pathologist's report but they are confident in it being hpp. Thank you for posting this blog!!!!!!! I feel so lost and sad... broken. I am looking at pictures of Deklyn and wondering how Ana and Baby 2 would look. After reading this I keep thinking... would my babies be able to survive with the treatment Deklyn is receiving. I am praying for Deklyn's recovery and for you and your husband to keep your strength. He looks like a happy little boy! I will be praying for a better future for all of us. I look forward to following your blog and seeing how Deklyn is improving.
ReplyDeleteErin I am sorry to hear what your going through! I'd love to talk to you more! If you want to please email me at cassondra.faith@gmail.com I'd love to just encourage you and hook you up with the right doctors! Praying for you and your family!
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