Prayers

I forgot to write in my last post about a little boy that just had a bone marrow transplant. He is having a rough time right now. He has sores in his mouth that are bleeding and possible pneumonia. His family are waiting for his white blood cells to start growing. I hope this will be soon as to start fighting against the bad cells and infections. His name is Elijah. He is from Iowa and is currently in Minnesota. I have been following him on Care Pages. It is a website that families can keep intouch as someone is being treated. I really dont know how I got onto his site but I began reading one day and now I follow everyday. There are some of the sweetest pictures of this little guy. He started treatments for cancer almost 2 or more years ago. They had beaten it and then it came back. He is a chunk and has a sparkle in his eye when he smiles. I know Ryan has problems but I always remember it can always be worse. I am thankful for the issue's we have to face and think of Elijah struggling for his life!!!!!!!! We dont have it bad at all. Keep this little guy in your thoughts that he is healed. May God wrap his arms around this little boy and take away the pain.

Love,
Becky

Happy Halloween!

Its been a long day waiting for Halloween night. Ryan was to have a party at school today. Hopefully that was fun and his costume isn't a mess. Trick or Treat hours at home are from 5-8pm. The fire station starts their party at 430pm with hot dogs and such...... We will head down there first and then to neighbors houses and that's it. He's usually in bed by 7pm. I would like to keep him awake a little longer. He was awake at 445am this morning and 345am the day before. That's a little much. He yells DADA when he's awake and ready for breakfast and it only gets louder the longer you wait to go in. So I don't wait to long because I swear the whole block can here him yelling "DADA". Ryan is a Care Bear this Halloween. Last year he was a Spider. He originally was suppose to be a turtle but the outfit didnt fit. I bought it several months ago and its a onsie type thing. He is too long in the torso. So a girl here at work had a blue Care Bear and she gave it to me. We have been practicing saying Trick or Treat. He does pretty well. Trick sounds okay its the treat that comes out "TA TA". He has been pointing to his bowl/plate and saying more if he is still hungry or wants something. He was saying Hi to every car that went by but now he doesn't. He will Oma and Opa and Mommy. He will also say Tractor if I cue him too.

I hope everyone has a great Halloween night. I will try to send out some pics tomorrow!!!!!!!!!!
He has been growing so fast his Care Bear outfit is almost to small. When he got shots last week he weighed 31 pounds and was 34 inches tall. Its always different everywhere we go. I stick with the pediatrician measurements. He is in the 90Th percentile for height. Thank God!!!!!!!! I really hope he isn't short. I would be happy with 6 foot. No matter what he is probably going to be a big boy. He's built like a moose. And strong as heck!!!!!!!

Take care and send pics of your little monsters.

Love,
Becky

Great Weekend

We had a very nice weekend. Saturday, My mom, Nancy, Christina, Victoria, Pamela, Madalyn and Debbie went to the Women's Lifestyle Show. It was fantastic. We then had lunch and took off shopping. I bought a new winter coat, its been 8 years. I love it. Ryan and I hung out and played in the leaves on Sunday. We visited with the neighbors and I mowed the lawn, well, the leaves. We washed and cleaned out the car and napped and it was a good day. I so enjoy those days. So I think Ryan might have allergies to grass and leaves. I did when I was little. He itched his eye's and nose. So now Im at work and Im looking forward to Halloween. Hope everyone's is good.
Take care.

Ryan and the Festival

Ryan did have a good time at the festival! He is so funny. He sat on the ground and listened to the story and participated in the hand gestures. He even moved closer to the story teller, and raked up leaves as directed. Inside at the gym, he rode the little car things, and played with balls..he does so love balls. It was really funny...he was watching some older kids make baskets and he got a basketball and stood under the hoop and raised the ball over his head like he was trying to figure out how to get it up there! After we got done at the gym, we headed to Oma's so Ryan could take a nap. Oma and Opa were not home because they are in Florida. As soon as I pulled into the drive Ryan exclaimed, "Oma-ma!". He is a case! I just can't get enough of this sweet little boy! His Nana loves him!

Good Morning

Hello all, the weekend is over. It went fast I know. I worked on saturday and Nana watched Ryan. They went to a fall festival in West Peoria. Ryan decorated a pumpkin and had his picture taken. He played and ate and had a good time. We hung out on Saturday night and he slept well. Sunday he ate all day. He kept pointing to the kitchen and would pull out his chair. He must be growing. Jeez!!! He was hungry. We went for a walk and came back and I made biscuits and gravy. We both took at 3 hour nap. It was fantastic. I carved the pumpkin and he had no interest in it whatsoever. Then we walked over to the neighbors and Dave and Ryan played while I talked with Sandy. Dave made us homemade ice cream. It was so good. We had dinner and took bathes and read books and Ryan was ready for bed. Not much to report. This week we see the surgeon on thursday and friday he gets his 18 month shots. YUCK!!! Saturday is the womens lifestyle show. So Ill be heading to that and then work. Thats it. Talk later.

Becky

funny

I forgot to tell you that Ryan is perfectly square. He is 32 pounds and 32 inches tall. LOL. He is symmetrical. I think he's going to be a short husky kid.

results

Yesterday afternoon Ryan had a cookie swallow. He drinks barium out of different cups to see if the liquid is penetrating his airway. Out of all the cups he penetrated his airway on all of them and aspirated deep and shallow. So they told me he has to drink out of an open cup and or a straw. No sippy cups for Ryan. We see the surgeon again Thursday. We will discuss all the test results and talk about repairing the hernia and the Nissen which is failing. We got home a little earlier than normal and I think Ryan thought it was the usual time as he was ready for dinner. That's our normal routine. So then we played outside and he helped me with laundry and got the broom out to sweep. He took a long bath and threw a fit the entire time i was getting him dressed. Then we read books like always. Then he went to bed. He slept from 630pm to 530am. Wow. I was in bed before 9pm. Oh it was great. I slept like a rock but I'm still tired today. How annoying.
Tonight we are having pizza and we are vegging out. No laundry to do, no cleaning. The only thing that needs done is to mow the lawn. Maybe Ill get to that this weekend. Maybe the grass will die soon. LOL!
I have to work tomorrow. That completely sucks. I have to keep my hours up. I cant have short paychecks. So Ill be sitting here tomorrow. But there are some things I need to get done. Hopefully the day will go fast. After that nothing. I plan on doing nothing.
Ryan's hair is growing so fast. He did fall this week and hit his forehead on a tricycle. He has a big scab, so again we wont be able to get pics taken. I want to take him out and put him in his tux and get pics soon or before surgery. Hopefully that will happen.
Ryan is going to a fall festival tomorrow with NANA. There are going to be all sorts of games, etc... I hate that I don't get to take him but he will have fun with NANA.

I hope you are all well and looking forward to Halloween. Please be sure to send pics of the kids in their costumes.
Have a great weekend and enjoy the nice weather.
Love
BECKY AND RYAN

NO GOOD NEWS

OK, I HAVE EDITED THIS AND SOME MAY HAVE ALREADY READ THE POST BUT I PUT SOME INFORMATION IN THAT WAS GIVEN TO ME AND HAPPENS TO BE WRONG. YIPPEEE. I KINDA QUESTIONED IT YESTERDAY BUT I WAS GOING TO CALL THE NURSE AND TALK TO HER TODAY. MY GUT INSTINCT WAS SOMETHING WAS OFF. THE DOCTOR TOLD ME HE LOOKED AT THE CT BUT RYAN DIDNT HAVE A CT. I THOUGHT HE MEANT THE MRI THAT HE HAD DONE A YEAR AGO. I LOOKED AND IT WAS NORMAL BUT SOMETIMES WHEN LOOKING AT THE ACTUALY FILMS THEY SEE THINGS THAT THEY ARE SPECIFICALLY LOOKING FOR. HE TOLD ME HE HAD SOME SMALL ABNORMALITIY. NOPE!!!! HE DOESNT. THE DOCTOR TRIED CALLING ME LAST NIGHT AND THEN I JUST TALKED WITH HIM AND HE TOLD ME HE WAS THROWN A BUNCH OF STUFF AT THE SAME TIME AND THAT HE THOUGHT THE CT WAS OF RYAN. NOPE. SO HE CALLED TO APOLOGIZE AND TO LET ME KNOW THAT HE IS FINE. HE DOES STILL SEE SOME SLOW DEVELOPEMENT IN HIS SPEECH AND TO WAIT FOR A COUPLE OF MONTHS TO SEE IF IT COMES ALONG. IF NOT THEN A SPEECH EVAL. BUT OTHERWISE HIS BRAIN IS NORMA. HE DOES HAVE LOW MUSCLE TONE AND WE WILL HAVE TO FIX HIS CLUB FOOT BUT TO HAVE A NORMAL BRAIN. OH, I NEED TO CELEBRATE WITH A BACARDI RAZ. THAT MAKES ME FEEL SO MUCH BETTER. I COULDNT DECIDE IF WHAT I WAS FEELING WAS DENIAL OR WHAT. I HAD THAT FEELING IN THE PIT OF MY STOMACH THAT RYAN DOESNT HAVE THOSE PROBLEMS. I DO KNOW HE IS A TAD BIT BEHIND BUT NOT BY MUCH. I AM GRATEFUL TO THE DOCTOR THAT HE IS SO THOROUGH. I AM TRULY GREATFUL TO BE ABLE TO HAVE A GREAT PHYSICIAN OUT OF THE ONE'S THAT HE HAS. AND THAT HE CAUGHT HIMSELF IS A GREAT THING. I WAS JUST GETTING READY TO CALL THEM WHEN I GOT HIS MESSAGE.
I THINK THIS IS A GOOD LESSON FOR EVERYONE THAT WE HAVE TO BE PRACTIV IN OUR OWN AND FAMILIES HEALTHCARE. THIS IS NOT THE 50'S WHERE WHAT THEY SAY GOES. THE MEDICAL FIELD IS A FAST PACED EVER CHANGING FIELD NOWADAYS AND THESE PEOPLE THAT ARE IN THIS INDUSTRY ARE HUMAN AND HUMANS MAKE MISTAKES. ITS A RISK THAT WE HAVE TO DEAL WITH. JUST LIKE ANYOTHER RISKS WE FIND COME ALONG IN OUR LIFE. NOT TO SAY THERE ARENT YAHOOS OUT THERE BUT BE INVOLVED AND QUESTION THINGS.
OH, IM SO MUCH BETTER. MAYBE ILL PUT THE U OF CHICAGO VISIT OFF. I DONT KNOW. ITS SO HARD. I SO APPRECIATIVE OF THE EASTER SEALS PEOPLE. THEY HAVE HELPED RYAN AND I IN SO MANY WAYS. NOW WE CAN MOVE ON AND GET HIS REFLUX AND FOOT FIXED AND LOOK OUT KENZIE JO AND REESE AND VICTORIA, RYAN MIGHT SWEEP YOU OFF YOUR FEET!!! LOL.

HOPE YOU ARE ALL WELL.

Stress

Well, we are off to the surgeon's office today. I really dont want to see him but the speech therapist suggested it. Maybe he will help facilitate appointments to U of Chicago. Tomorrow is the Upper GI test and then the Easter Seals doctor. Busy week. Looking forward to the weekend. Can you believe that Halloween is almost here. Ryan is so funny. Just the way he swings his arms when walking. Like he is king of the world. He is climbing all over the place. Its a fight now to get him to brush his teeth. He did better with that 6 months ago. Im sure it was fun then now its boring. He throws a fit when I start to brush them for him. He just wants to suck on the toothbrush to get the paste off. Nothing else to report. His little tummy is still bloated and he cries sometimes like it hurts. The hole where his feeding tube was is now pushed out some. It was inverted. I think this is from the hernia. Ill keep ya posted regarding all the appointment.

Take Care.
Becky

Nice Weekend

I had a great weekend. It was relaxing and fun. Ryan was such a good boy. We hung out and went on a dinner date Saturday. WE saw a dog and kept telling him to say "Hi Puppy". We went to Walmart and he started saying "HI Puppy". Sunday we got up and took a walk then played and read the paper. He took a great nap and so did I. We visited with the neighbors. When Ryan wants something he points and grunts. That is starting to get on my nerves so I told him to say "More Please". I was on the phone and he kept saying "More Please" and I caught the end of him saying that. I yelled Yippeeeee!!!! He hasnt said it since. I know he can say more than he does. He took a good long hot bath and played, we got pj's on and read books. He slept from 700pm to 630am. He was in a pretty good mood.

We did spend the evening in the ER last thursday. They told me everything was normal(xrays). Then I got a call late Friday that the Chest xray said his hernia is worse and that he needed a upper GI xray. So we are scheduled for that on Wednesday. I also was told his abdominal xray showed a calcification in his abdomen. I talked with the nurse this am and told her he has been choking, coughing, gagging, his stomach is distended. I feel so bad for him. He has been in a good mood but then he cries and acts like something hurts him. I am so fed up with the doctors at this point. I want to have him referred back to the University of Chicago. I cannot stand to have him like this. It is not normal or healthy. If he must have surgery, I refuse to have it done in Peoria. There is definately a listening problem here. Anyway, Its annoying and I wont sit back and let Ryan be like this. No matter what it takes. I will not have it. So right now Im waiting. We see the Easter Seals doctor on Wednesday and I will be talking to him about this also. Im a little stressed out right now. My neck and shoulders are killing me. Some anxiety but I am lucky because Ryan is so good. He is a sweet boy.

Hope everyone is well and pray for Ryan's health.

Love,
Becky

Ryan is cold!!!!

Ryan woke up last night cold. I even had the heat on and his giraffe pj's. So I took him into my bed and covered him with his blanket and my blankets. He was laying on my chest and the kid was out!!!!! Sawing logs, people!! I put him back in his own bed at 200am. Last night I dont think either of us got a good sleep. Maybe tonight.

All is fine. Im getting anxious about his pending surgery. Im really starting to freak. Im going to see the surgeon again to talk with him and ask some more questions to just make sure.

Ryan has been having more problems with reflux and cough. Sometimes it sounds like he drowning in his own saliva. Its working my nerves. Im ready to head back to U of Chicago and have real pediatric specialists see him. These idiot peds doctors around here are awful. I do like his orthopedic surgeon but for the GI doctors. They suck!!!!!!!!!! With a capital S.

Its almost friday and that is so exciting. WE are doing a few things this weekend to spend time together and I need to get some outdoor stuff inside.

Hope you all are well and braving the cooler weather.

Take Care,
Becky

Its fall

Finally, It's going to get cooler and stay cooler. Thank goodness. Ryan is doing well. He slept great last night. The last two mornings he has been in a fabulous mood. He has been running away and hiding from me if he gets in trouble or doesnt want to do something. He thinks if he covers his face with his hands that I cant see him. It is hysterical. Maybe I play "Where's Ryan" to much. He really thinks I cant see him.

His hair is growing. I cant believe how quickly in just 2 days its grown. I wont take long for it to be back where it was. I will have to get new clippers so that guard wont fall off anymore. He does have a nice shaped head though.

Oma and Opa are leaving this week for Florida. Lucky them. I remember last year when they went, Ryan didnt recognize Oma and had to warm up to her. He will know this year.

Not much planned for the weekend. He have a early morning errand on Saturday and I might want to go to Farmington on Saturday to see if there is anything I want at Spoon River Drive. A certain booth is my favorite. Usually all the good stuff is gone the first weekend. Its suppose to be nice so Ryan and I will venture that way. Might go to a cook out that night and Sunday alot of nothing. I always save Sundays for nothing. Those are our family day. To do what we want when we want.

Well, have a good week. More later

Take care,
Becky

Happy Weekend

Hope everyone has a nice weekend. Not many more nice one's to come Im sure. Winter is just around the corner. As always Ryan and I will be hanging around. Take care.

Becky

Im singing the sleep song.

Im tired. I cant even stay awake at my desk. Ohhhh, sleepy!!!! Get through today and then it friday. Not much happening. Just got my DVR last night. I need to get it hooke up tonight. I cant wait to use it. Can you believe its going to be high 80's for like 3-4 days. Sick of that. Not much happening this weekend. Have to volunteer at church and then we are resting and playing. Im going to try to get some pics this weekend, especially before surgery. Well, I need to get some caffeine. Later,

Becky

Ryan is well, attitude and all. Hitting alot lately!!!! Slept better last night. I got laundry done so I wont have to do it on the weekend. Hopefully he gets a good nap today at school.

Surgery Set

Ryan's surgery will be on November 8th. We have to be there bright and early. We have to spend the night. YUCK!!!!! I can already smell that place. I cringe thinking of having to stay there again. He will have a pin in his foot and the cast will be up to his crotch. At 3 weeks post-op we go see the Doc and have the cast removed and pin taken out then he gets a water proof cast for another 3 weeks. So we will be playing and doing alot of stuff this month. Glad that its after halloween. I'll have to get pictures done this month and get prepared. We wont be doing alot or anything the month of November. He shou.ld be back in full force by February. I hope. Therapy will start again in January. Thats all for now.

Becky