Getting to know all about YOOOUUUUU....



It's Sunday!! Time for a little funday Getting to know YOU action..I havta say, that I look forward to this

all.week.long.



If you've never played along..oooh..I really hope ya do..all you have to do is copy and paste the questions..answer them..and come back here and link up..super simple! Or if you don't have a blog

(the horror) and you still want to play..just answer the questions in the comments section..



This weeks questions are...



1. If you were stranded on a desert island and could pick one person to be stranded with you..Who would you pick? Family members not included.

Hmmm that is a hard one. Since I can't pick family I think it would be my best friend Rachel.

2. Do you read celebrity gossip?
YES YES YES! I love it!! I love TMZ

3. Favorite show you're waching this season?
The Real Housewives of Orange County

4. How tall are you?
4'11

5. What was the last book you read?
NDD Nutrition Defecit Disorder by Dr. Sears

6. Flats or heels?
flats

7. If you had to choose one natural disaser to go through, what would you choose..Earthquake, Tornado, or Hurricane?
Hurricane any day....I am terrified of Tornadoes and I've never been through an earthquake

8. Thong, panties, or (gasp) granny panties?
hahaha granny all the way..


Want to join in? Go to Mann Land 5

No news is good news....right?!

Well there has been nothing major going on right now with Anthony. We are playing the waiting game. I got in with the doctor this week and they said that the arteries to both kidneys are narrow. This is the reason for his high blood pressure. We left the office Monday feeling ok about that, until I looked into it further. The more I looked, the more I panicked. I called the doctor and finally got in with him again Thursday. I told him my worries, and they immediately scheduled an MRI & MRA of the brain and abdomen to check for other artery narrowing, and blood clots (this can cause the narrowing). We went Friday am and had that done. We will hopefully have results by Wednesday of this week, they also repeated some blood work regarding the tumor. He also goes tomorrow for a small swallow study to see if anything is going into the stomach better than it was two weeks ago. I believe it is, because yesterday he begged for chicken:( we gave in a gave him tiny bites of chicken nuggets (the inside only) and 4 french fries smooched. He ate it all and no gagging!!!! That is huge! Granted it was only 1/4 of a chicken nugget, this was still good. This morning we tried 1 jar of stage 1 bananas, and he ate the whole jar in tiny spoonfulls, no gagging or choking! Amen to that!! Hopefully tomorrow's test will give him the all clear to eat and drink like normal. Please pray for that:) He is so happy and I'm thankful for that, it could be much worse. I feel bad for my little man:(

SOOO LONG, I KNOW

I know it has been ages since I posted, but honestly I don't have time anymore. I'm so full with doctor's appointments, pta things, and just being a mom that I don't have time to sit down and blog a while. I apologize, but once you finish reading this post it may clear some things up for you.

Where I left off, November 18th 2009 Anthony had a Bronchoscopy done, no big deal. It would check to see if something is not formed properly which would cause aspiration (Which we have been fighting for 2 years now). Anthony did very well for the procedure and we went home about our business later that afternoon. The doctor sat down with Chris and I after the procedure an said

Doctor: "Ok Anthony did great you should be ready to head home shortly. Everything looked normal and I see no reason why he aspirates. I expect to get the "Washing" results in by Wednesday of next week and then we will go from there. If the results are abnormal we WILL be talking again very soon, if not I'll see you in 6 months."

Me: "Well what is "washing" what would that show?"

Doctor: "It would show whether or not he is aspirating food"

Me: "Oh yeah, he isn't. I'm not worried about that...(laugh)"

Chris:"Yeah, he isn't. So we will probably see you in 6 months."

Doctor:"Sounds good. I'll talk to you soon."

I get a phone call on Wednesday November 25th early in the morning like 10ish.
Nurse: "Mrs. Saperstein, this is (blank) from Dr's office. I'm calling to let you know that the washing shows that Anthony IS aspirating food."

Me: "What?!? So what do we do now?"

Nurse: "The doctor is working with Anthony's GI doctor and we will have a plan soon"

I was freaking out to say the least....My baby boy has been having food go into his lungs for 2 years and I didn't know?! No way not possible, but ok we will figure out a plan no big deal.

Since this was the day before Thanksgiving, we didn't hear from anyone until Friday. Friday they tell us that we need to meet with a surgeon and set up an appointment for surgery....They (the GI and Lung docors) recommend a procedure known as a Fundo with a G Button.

So in the meantime as I'm researching this surgery, I realize this is for acid reflux children, well see ALL the tests ever done on Anthony for reflux have been negative. He doesn't have reflux, we've had an upperGI, 2 24hr ph probes, nothing showed acid reflux. Yet the doctors wont budge the surgery will happen. We talk with the surgeon and forge on with their plan and trust that they know why they are doing this. Their point was with no reflux this will still reduce his aspiration by at least 50% and we had no choice but to agree with that.

So about two weeks later comes surgery day. Our families were there and we were all ready for a one to one and a half hour surgery. Well every hour the nurse called to tell us he is still in, maybe one more hour and we should be done. 3 hours later the surgeon comes out.

Surgeon" Well Anthony did very well. However, there was a Hiatal Hernia which we were not expecting (Because EVERY test done showed there was NO Hiatal Hernia) Therefore his stomach was in his chest."

Us" In his chest?!"

Surgeron: "Yes, and we had to move the stomach back down to the correct place and fix the hernia to continue. He should recover just fine."

After two days in the hospital we went home and it has been a struggle ever since. We came home with iv pole, feeding pump, tubes, gauze, syringes, medical tape, feeding bags, formula for the G-button. We became nurses in 3 days...haha Seriously!
He is currently on 4 feeds a day each is 8oz and we will work up to more. Nothing by mouth. Why you ask? Oh because ever since surgery he chokes on anything that goes down. Yeah wonderful...We are working out a plan to go back in a loosen the Fundo a bit, bcause it is too tight. That should be sometime in January. So until then nothing by mouth.

In between all of this he had an appointment with the Nephrology doctor for his high blood pressure. He says indeed Anthony has high blood pressure (Thank You!) and they want to do lab work and urine tests. So away we go no big deal. I've been fighting since April for a doctor to tell me yes this blood pressure is too high for a 2 yr old (we are talking sometimes it would be 125/80 or 116/50) no one thought this was a problem. Now they do! Well we got a phone call on Wednesday (seems to be a good day to give bad news for doctors)
Nurse" Mrs. Saperstein we have your sons blood work back and the doctor wants to do some further testing."

Me:"Ok sure, what does this abnormal test indicate?"

Nurse:" Well I'm going to use a big word here..
(pause for a few seconds) Tumor."

Me:" A Tumor?!? On his kidneys? Could it mean anything else????"

Nurse:" Usually not, no. So lets go on with these tests and talk again. This could be a false positive."

So that leaves us at today we go in at 2:00 and then again at 3:00 for some ultrasound testing on his kidneys. Please pray for my baby boy this afternoon. This is the last thing he needs. He has been through soooo much!! I'll try to post afterwards the results. The best way to keep in contact with me is facebook. I can update that from my phone. My email is ashleysaper@gmail.com.

Also, while we were in the hospital my mom had a talk with a social worker about our situation (Chris being laid off on top of Ant's problems) she was very rude and unwilling to help, but a volunteer overheard my mom talking and asked her to wait a moment he had someone he wanted her to talk to. My mom talked to a wnderful woman who is a child life advocate, her daughter has cancer and they lived in the hospital for 2 years. She listened to my mom's story and she came up to our room, without Chris and I knowing, and gave us Christmas for all three kids, meal vouchers to use while in the hospital, and she just talked with us for a couple of hours. The social worker happened to come in while she was there and she was of course very nice. She told us she would try to work on our problems. The next morning, we had another set of gifts for all three kids, and $400.00 in walmart gift cards. Oh and did I mention that there were two families that wanted to help us out? Yeah they paid our water bill and power bill for two months. It was amazing to say the least!! I'm so blessed to have been able to receive that. It made our Christmas worthwhile. Ant's surgery was 8 days before Christmas and we had no money to buy Christmas presents, we did not know what we were going to do, and it was heartbreaking. I encourage all of you to donate to a local children's hosptail whenever you can, you never know when that could be you needing it. I know I will be giving back as soon as we are able!!

Anthony

Today Anthony is going in for a Bronchoscopy. You can read more about it here. About two weeks ago he had a routine swallow study done to show his progress in oral and motor therapy. It showed that he has not had any improvement with aspiration since the intial swallow study back in October 2008. Because of this his therapist had to discontinue treatment at this time, and along with the pulmonologist we decided it was best to do a Bronchooscopy and see if there is something physically causing the aspiration (versus something neurologically). We hope to get some answers today that will explain his aspiration. You can read more about Aspiration here.

On another note, Anthony got his Spio vest last week thanks to Grandma and Papa! We love it!!! If you know anyone that has a child with Sensory Integration Disorder I highly recommend it!! We can now go out and he is calm and not overwhelmed. Read more about it here.
Thanks for stopping by! Please keep us in your prayers today!!

5 question friday

Quick run down of the rules...copy and paste the following questions to your blog, answer them, grab the MckLinky BlogHop code and link up! I'd also be very grateful, appreciative, forever indebted, honored, etc...if you'd link back to the creator of this blog carnival, Mama M.(the 5 Question Friday Carni!)! Oh, and if you don't have a blog, but want to join in, just leave me your answers in my comments!



1. What celebrity have you been told you look like?
I've never been told I look like a celebrity

2. What is your all time favorite movie, any special reason why?
Steel Magnolias. I don't know why I love that movie but I do. I could watch it all the time.
3. Since we're talkin' movies...Popcorn: overrated, underrated, or 'bout right?
Overrated
4. Are you a glass half empty or half full kinda person?
half empty most of the time. i need to change that
5. What perfume/cologne do you wear?
Right now I love Victoria Secrets Fresh and Clean spray I believe. I change them often

Sensory Integration Disorder

I have not blogged in a while and for you 3 people who read my blog, I apologize. I have been so busy with our trip to Alabama, then school starting that I am just now catching up on this.

We have started a new diet right now. I'm reading a book called NDD by Dr. Sears. I started that diet on Wednesday and I love it! It is almost organic, but not quite, and we can still eat a lot of our favorite foods. This has made a big difference on the kids moods (and mine:)) I recommend that book to everyone who has or is planning on having a child, it is awesome what you learn.

On to the title of this post, Sensory Integration Disorder, Anthony was just diagnosed yesterday with this. I'm still learning about it, and I'm not quite sure yet what this means for him and us, but I'm hoping to find other moms out there that are familiar with it. We will began therapy within the month two times a week. So we are up to five therapy sessions a week, each are one hour long. I'm ready to get that going and see what happens. Everything I find says that he could be diagnosed with ADHD or Autisium when he gets older, so I'm trying to get as much information now about those two as possible. If any of you know anyone who has this disorder or is aware of it, please ask them to get in touch with me. I need all the information I can get right now, such as support groups, books, tools, toys, etc.

If you have any questions or comments please leave them. I'll try to post pictures tonight or tomorrow of the kids first few days of school.

Not At All Wordless Wednesday

This post has been in my mind for a few nights, but I've never sat down to type it. These last few days have been hard on me to say the least. Hell this summer has been hard on me! I don't know what more I can take, or what I need to do to change things, but I need to do something.

Speed Racer is gone with his dad and has been since June 4, this is the longest he has been gone and it is killing me. I'm so anxious all the time, and I'm just ready for him to be home, he will be this Saturday though and I can not wait. I got to see him a few weeks ago for the day. I flew into St.Louis for a few days because my uncle was in ICU. It was nice to visit with Speed Racer and my family, but not under those circumstances. I am glad I was able to be there in St.Louis with my family during that time. My uncle did pass away the night I flew home, while I was on the plane. I was ready to be home with my babies, and had made the decision to go ahead and go home early. I could not bear to see my uncle in an ICU bed any longer. It was killing me. I'm sad that I wasn't there after he passed to help support my family, but I'm also thankful I wasn't there when he passed, I don't know that I could have handled that. My grandmother (who I was named after, my dad's mom) also passed away while I was on my way home from seeing her when she was in the ICU in 2004. Both of them waited until I left the hospital and was heading home, to leave this place. I have been told that your loved ones do that with people that they know would not be able to handle them passing, I don't know if this is true or not, but I would like to think that is what happened. None the less I still have the regret that I didn't attend either funeral, and that I wasn't there when they passed. My uncle's passing made me realize that life is short, and that you are not guaranteed another day. He was not 100% healthy by no means, but he was living pretty well until about a week before he passed, and before we knew it he was in Cardiac arrest and never came out of it. It was a shock to me, and I'm still confused. How could it have happened so fast? How did no one notice that he was so sick? The doctor's had to have none he was getting close to this. I don't know. I'm just confused, and sad. I am not ready to loose either one of my parents, and to think that my three cousins who are all around my age, had to go through this hurts. I hate it! I think everyday about the family that he left behind, and how we will never have another memory with him, it hurts.

Monkey also has me kind of down in the dumps, not him, but his situation. I am tired of doctors, I'm tired of needles, I'm tired of xrays, I'm tired of tests, I'm tired of bottles, I'm tired of therapies. I'm just tired. I spend way to much time at the hospital or therapy with him, that he has no clue what a normal childhood is. He shouldn't have to have his blood drawn every other month, and have tests after tests. His poor little face the second he notices we are in the doctor's office is heartbreaking. He hates going! I hate putting him through all of this, but I have no choice. It is so aggravating to go somewhere and talk to someone about him. I'm so tired of hearing "Oh sweetie he is fine! They won't find anything wrong with him, look at how healthy he is! He's walking and talking that's great!" No it's not, and yes he is sick. YOU just can't tell. Just because he walks doesn't mean he doesn't have a left side weakness. Just because he eats normally and drinks from a sippy cup doesn't mean he doesn't choke and have to have thick it in every cup. Just because he isn't on high blood pressure medicine doesn't mean it isn't high. Just because he isn't purple at the moment, doesn't mean he won't be in an hour. Just because he is not terrible skinny, doesn't mean he is growing right. Just because he throws a tantrum like a normal two year old boy, doesn't mean he is 100% well. He isn't. He is sick. He has something wrong, and until I get a definite diagnosis I will not stop! I know that since I'm young people think I have no clue what I'm talking about, but I do. I've known since the moment I found out he was not growing at 33 weeks that something was wrong, when I lost weight at the end of my pregnancy, when he was so small at birth, breathing problems, pneumonia, bronchitis, weakness, stomach problems, fevers, temper, aspiration, everything. I knew with every symptom something is wrong with him. Yes he is bright eyed and very active, but it is the things that you can not see. It the extra things that I have to do to make his life easier. Those you don't see in the pictures or in person. So I'm tired of hearing "oh he's fine", etc. The truth is he is not. Some of his most recent tests have come back fine. However his AST levels were elevated and I am hoping to know more about this soon. We still have a lot of tests to get back, but so far it's ok news. I'm just down in the dumps if you can't tell. I hate that he is going through this, and I wish I could take it all away, but I can't. Please keep him in your prayers. We both need it right now.

I think I'm done complaining and rambling but I needed to get that out.