As of Feb.20.09-Curtis has now been dx. with several neurological diseases-The primary one is called Neuro-Degentive Dystrophy with Global Neuropathy-as a result of the NDD he has Childhood Dementia as well as Degentive Diffuse Brain Disorder. All that is fancy talk for his brain is being destroyed one fuction at a time. At the present he is a shell of the little boy we use to have. He has dropped coginitively to 3mo level,he requires periodic O2-because his brain forget to tell him he can breath,he is on 24 hour tube feeds,has a vp shunt,has siezures,cognitively blind and deaf. We have good days where you can catch a glimpse of a smile-Curtis has been placed on pallitive care and followed by Footprints thru Cardinal Glennon Hosp. We know there is nothing left we can do for Curtis but to keep him comfortable and give him the best quality of life we can manage. This disease has robbed us of our laughing,bubbly,playing in the dirt chatter box(he no longer has any speech) it may sound unbearable to most and without the faith of trusting God to carry us through it would be. But we F.R.O.G.(fully relay on God) to carry us through. Somedays I have a little trouble with the F part-some days I feel as if the frog is drowning-but God has given us many blessings,and we cling to those.We dont know how long we we will have Curtis before God calls him home-we dont know what shape he will be in when he receives his wings what we do know is God is strong enough to sustain us when we think we cant make it through one more day. Come follow us on this journey-lift my son up in your prayers and remember God is good and understands even when we dont. F.R.O.G. I have started a quest for stuffed frogs for Curtis room. Its a visual way to remind me and all that enter that F.R.O.G.'n is the only way to get 'er done. sharon and crew as of 4/09-Curtis cognitive level is now at about 1-2 mos old-the only thing left is his ability to walk-his speech is completely gone-with the exception of a occasional gruntle sound-he has been placed on medication for severe pain and for a form of sundowners. Its the disease that keeps on giving(or taking) wwe keep F.R.O.G.'n and fighting the battle on on knees. I dont know how else to do it! as of 10/12/09 Curtis has been placed on Hospice. Dec 24,2009 at 11:42 my sweet baby boy became a Christmas angel. We are beyond sorrow,but still fighting this battle on our knees-the hardest battle we have ever been asked to fight at that is to stay here while our baby is rejoicing and dancing on the clouds-we need your prayers and support even more now
As of Feb 1,2010 we have offically opened the Curtis Shubert F.R.O.G. Foundation-in hopes of offering support prayer and encourgement to other families that are traviling this impossible journey of medically compromised children. Thru the foundation we hope to keep the memory of our Curtie alive and strong. We hope to pass on the many things that thru Curtis God has taught us.
We also are following God's lead (and Curtis nudging) to become foster parents and possibly adopt children with medical needs. Please keep us in prayer as we go forward with trying to do God's work and pay it foward. as always F.R.O.G.
June 12, 2013 8:26am
Ok now that my feet have touched the ground again
When we got the call about James we didn't even know they were having court Monday-guess the caseworker felt that since it had been cancelled so many times best not tell us. When the call came in she asked for both of us to be on the line-when she said those words "TPR granted and in best intrest of the child to be adopted by the Shuberts " I cried and screamed THANK YOU JESUS-neighbors heard me Im sure. We called James in from outside so we could tell him that he NEVER EVER had to worry about leaving again the smile and relief on his face made all the hassle worth it. To see that little boy finally after almost 3 years be able to relax and breathe a sigh of relief was priceless. Now he knows that we all still have to go to court and have the judge sign this legal paper making him legally ours-but he is ok with that-he now knows that he can stop worrying about being moved. And let me tell you his behavior has been drastically changed-he doesn't seem to be quite so jealous of the other kiddos-its actually kind of strange to see how different he acts towards the other fosters now-he is more at peace more like-'yeah you guys are here but Im here forever. He even made a sign to hang on his door 'JAMES SHUBERT FOREVER ROOM' He told the caseworker thank you. He was teasing Bryan and Aaron and Brianna by telling them he was their uncle now. He did ask if we could get a message to N the one that threatened him with getting him kicked out of Shubertville and that he was never going to be a Shubert-he wanted to tell him 'BLAH BLAH BLAH-TAKE THAT NOW GO BACK TO JAIL AND STAY THERE. IM A SHUBERT AND YOU LIVE IN JAIL. N is in residential for the really bad kiddos, James thinks that's jail. The adoption worker that we have also doubles as N caseworker-so we will tell her what James said and let her decide. We also reminded James that N is a very disturbed young man so not to take him seriously.
So heres what happens now-we get a adoption worker-which we have-she comes out we do tons of paperwork and then we get a court date. We then all get dressed up and sit while the judge says YOUR A SHUBERT LEGALLY. In between that time we are going to have a huge party-not sure when yet-I still got to get through Bryans 17th-but soon after that-In the meantime we are all enjoying the fact that he is a Shubert and never ever going to have to leave. Plus now I can (well doing it anyway) post his real name and picture of our newest son. James is thrilled that he no longer counts as a foster kid-he has officially moved to the pre-adoptive kid status. What to know why-cause according to James-NOW THEY CAN PUT MORE BABIES IN SHUBERTVILLE. He said he is going to tell the lic worker when she comes out that he doesn't count as foster and Bryan doesn't count as a kid so that opens moms house for 3 more kiddos. BUT NO TEENAGERS- He has appointed himself the official rule reader for new kiddos-I love that kiddo.
well that's about all for now oh wait one more thing as a after thought- TO THOSE THAT EVEN THINK JAMES IS A REPLACEMENT FOR CURTIE
HE IS NOT A REPLACEMENT-HE IS A INHANCEMENT TO THE SHUBERT HOUSEHOLD.
love you all and thank you for all the support and prayers-I hope you all stay tuned to the next journey we embark on-which of course is more kiddos. start praying pink and tiny.
hey I just gave birth to a 8y/o bouncing baby boy. no wonder Im tired. lol
Guestbook signed 0 times today
Please sign love the support. Happy mail is Curtis Shubert 229 St christopher Cahokia,Ill 62206 frogs are still welcome
curtis's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.