Glen’s ONH Blog

Hey everyone we have made it home safe and sound and never we have never been so glad to see hay grass cows and stone county in our whole lives!!! We had a great crew to greet us when we got off the plane, my mom and dad shawns mom kurt and christy clay bailey garret noel and carol!!! It was great and we went out to dinner at cheddar’s WOO HOO and kurt and christy bought our wonderful dinner! We are here and we are still so exhausted but we are so thrilled to have glen here safe and back to normal and we truly met some amazing people while we were there and i do miss them all so much they became our family and we love them all!!!! And we are all praying for everyone that is still there and still getting treatments cant wait til you all get to go home. Glen does have improvement in his vision he sat on the couch and watch tv that is the first time he has ever done that and i asked him questions to see what he could see and he did great PRAISE GOD!!!!!!!!!! So we feel blessed and we just pray that it keeps getting better and better!! We are so blessed! Thank you all for your support and your prayers we love all of you !!!!      Shawn Tiffany and precious little glen 

p.s. Glen wants everyone to know that his granny and papa was waiting with a red razor cell phone of his very own!!!

                   Thanks guys !

Hi everyone Glen is finally doing better it took 2 days for him to be back to normal —- yesterday we were so worried that he had some brain damage cause he was not acting like himself and he was shaking and not walking straight and couldnt speak right ! It scared me to death and then we realized that he was so low on electrolites and so we gave him orange juice — 4 glasses and then he is so much better! He is so scared still and so tired that he is still not up to par! But he will soon. Bless his little heart he has nightmares at night about it and he gasps for air and thrashes his head around. The main doctors have talked to us and they have said that Glen has a extremely high spinal pressure so he can not have anymore treatments and to be quite honest I wouldnt do anymore anyway to sit there and watch your child suffer like we did and screaming in pain — shaking beyond belief and vomiting– and then his stats down so low and thinking at any minute he is going to die is the worst feeling in the whole world — I thought to myself here I brought Glen over here to give him better eyesight for a better life and now I am going to have to leave here without my baby— my head was spinning my legs were shaking and all I could do was scream. We came here and he got 2 treatments and the way we look at is that Glen got these 2 treatments and God took those stem cells and placed them where they needed to go because his vision has improved so he got what he needed and God took care of him and kept him alive and he is going to see that we get home safely. I thank each and everyone of you that prayed for us and helped us to get here because we came just hoping to get some more vision and he did get it so we are so thankful and feel so blessed and we PRAISE GOD FOR THAT!! There isnt a morning that I wont get up without praising God for letting me once again keep my baby! We love and miss everyone and cant wait to come home!!!   Thanks so much for everything and please pray for us to make it home safely — Glen says he cant go any longer without his GRANNY!!        See you all soon

Well Glen woke up this morning with a headache — which I expected so I gave him some motrin and about an hour later he said it hurt worse so I gave him the other dose of motrin and within 30 minutes he was screaming to the top of his lungs that his head hurt so I went and got the doctor and they came in and was asking him questions and he was just screaming and he was in more pain than I have ever seenhim in! and he started kicking and screaming and hitting himself in the head and hitting me cause he was in so much terrible pain! So they gave him some valium and it still did not knock it so they came back and gave him more so he had 10 miligrams in an hour and then I was watching his chest and and it looked like his heart was going to beat out of his chest and he was a little asleep and then all the sudden his body starting shaking all over and he started vomiting — he had vomitied earlier too. and I started freaking out — I thought he was going to die — I was running down the hallways screaming for someone to come and help my baby and all the doctors came in and it seemed as though nothing was being done and all I could think was what have I done to my baby? I have never been so scared in my LIFE! I was crying and shawn was crying — it was the worst day of our life— then I called my mom and dad and told them to start praying and had tonya call the church and they had told me that this could last for 7 days and I was shaking and screaming and after everyone starting praying he woke up in about an hour and he said his head did not hurt anymore PRAISE GOD and ONLY GOD!!!!!! And the rest of the day he has not had any more pain and he had slept alot and he has drank some water and he just now ate some spagettii so he is feeling better he was hooked up to oxygen and a heart monitor and an IV and the only thing that he has left on him now is his IV so he is doing much better and this is a day I would never ever want to relive again and I am so thankful to have my sweet baby and he is normal ( making smart elic remarks) they said that it happened because they did not measure the stem cells when they put them in and they put them too fast so it put so much pressure on his head and it was a day of living HELL for all of us and we are just so thankful now so thank you all who prayed for him and I will keep you posted. Please continue to pray little glen needs it!!!

Well Glen’s time is up and he has done so great! He laid still and was so good he said he doesnt remember what went on! I made him macaroni ( I scraped up enough stuff to make it!) and he ate alot of it and I bought him a $2.00 can of Dr. Pepper and he drank it through a straw and loved it. He said he does not have a headache –no aches at all! Thank you God we stood outside of the O.R.  and prayed the entire time he was back there getting his spinal and then when we came back he slept for 3 hours I sat in a chair next to him and watched him breath and made sure his heart was beating correctly and I thought I was doing the same thing 7 years ago today! Sitting beside his bed making sure he was breathing and his heart was beating and crying– I feel so blessed to have such a wonderful little boy who is so brave and STRONG! Thank you all so very much for all your prayers you will never know how much they mean to me us and we love all you guys very much!!!!!  1 down 3 more to go!!Thanks everyone

Well Glen went down today at 230 and he got his meds to go to sleep and it worked instantly so that was a relief and it took 15 minutes for him to be done and back so i coud see him. Now he is still asleep and his breathing and heart and everything is okay so we are just going to let him sleep shawn went after some ice cream and we are going to give him his birthday present when he wakes up he did good with the iv and needles so that is great and now we are just waiting to see if he gets sick or not so PLEASE PRAY HE DOESNT GET SICK! I know that is what I am praying and the very nice sweet translators bought him a birthday cake so we will have a party later and one girl macie gave him the transformer movie and his bud bradley gave him a transformer so he is all set! I am going to sit by his side until he wakes up and take care of him so I will blog in a few hours on how he is feeling please pray thanks

Hi everyone sorry it has been a while since I have blogged but honestly I just have been a little preoccupied they had some issues around here and you know me I freaked out — everyone who got spinals on monday all got very sick and Glen is having one on wednesday so I freaked OUT! No one can understand what this is like it is just terrible, but we are trying to make the best of it—I have seen some good progess in a 15 year old Macie she was one who got sick but then she is better today and she was so excited because she could see furthur — she had me hold a tablet out furthur and she couldnt stop moving her feet cause she was so excited because she could see so much furthur so that was the positive thing I needed to keep going. We are sure counting down the days that is for sure and I will let everyone know how things go tomm. I have all the meds to help make his 6 hours that he has to lay down flat go a little easier and he has a portable dvd player I can hold in front of him so he can watch his new movies, and since it will be his birthday Shawn is going to go down and get him a ice cream cone to celebrate and I brought him a HUGE trasformer card and we got him a transformer at JUSCO a store here the other day and Shawn hid it so he has no idea ! So we will make it as fun as we can and PARTY when we get home. There is a 13 year old boy who is here for the same thing and he went down and bought glen a transformer for his birthday and he can draw GREAT and he made glen a transformer picture he is so sweet and Glen thinks the world of him we have met some amazing people and we are blessed with that for sure — well I will let you all know how things go on our first spinal. Please pray for Glen tomm. — please pray for all of us !!! We really miss you guys! Cant wait til August 17th!!!

If you look close Glen has acupuncture needles sticking out of his head, Glen got acupuncture today and he was a brave brave boy he didn’t even shed a tear I told him he is my HERO! He is going to get a special prize today. We are going to head out to the geomomarket and one of his little buddies is going with us so the rest of the day will be pain free and full of fun. I will talk to you all later we are going to hopefully find some good food today but I really doubt it!

Well today is a day off and we are going to go to the geomomarket with some of the other families and try to have some fun! We really miss you guys ALOT! Glen wants to know if aunt noel had maylin marie yet and I tell him she better not have without us! I am going to really observe glen today and see if the first treatment has helped!  I will sure let you all know and glen wanted me to tell Julie that he is savoring that box of zingers!! and he wont share!!!!

Well Glen got his first treatment today at 2pm and he did good he cried a little when they said needle but I put a numbing cream on and so I told him he wouldnt even feel it and then they did it and he said he didnt feel it and then they took us upstairs and he had to sit on my lap and sit still for 30 minutes while the stem cells were put through the IV — he did good and they keep checking his temp and he hasnt had one but he is tired . So he is doing good so far and they said that he gets his first spinal on wed. which of course is july 23rd and is birthday! Since we have been here we have met alot of americans that are here for these treatments and some of these people it jst breaks my heart –one little girl shiree was having 25 seizers a day and she has been here for 1 week and had 1 injection and has not had one seize since! and every other ONH patient has the stigma where their eye move back and forth really fast so we see how things could have been and feel very blessed that Glen doesnt have these issues and we just pray for these sweet little kids— somehow we always have other kids in our room playing with Glen –I know it is hard to imagine that Glen has already been to the RT MART and got some chinese power rangers! The RT MART was quite a trip let me tell ya ! We took a taxi and oh my goodness that was so scary and Glen said ” mom this man does NOT know how to drive!” good thing he couldnt understand english — then the RT MART was so different live frogs and turtles– raw chicken laid out there to just pick through and get — and chicken feet —anyway their pizza is good — the only thing that is good and the diet coke is gross — so you can imagine what I am like! hehe Well I will let you know what tomm brings -Glen is walking around saying knee-haw which means hello in china and he thinks that is just so funny and he just puts his arms around these chinese girls who are our translators and hugs them and tells them they are AWESOME! its pretty cute. Well I will write tomm.

  I want everyone to see what my granny made me it is a quilt of me and her with fuzzy hair and a cheneile tree. She put us raising our arms to heaven cause we love each other all the way to heaven and back and I am very proud of it and she was still sewing it together at the airport right before we left with tears running down her face onto my quilt I will treasure it FOREVER!! Thank you Granny I love you so much and I miss you SO MUCH!!!!  

Here is Glen in The Bank of China being an Olympian!! Go Glen