Wednesday, December 30, 2009

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!!

Wednesday, November 18, 2009

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!!

Friday, September 25, 2009

5 question friday


MckLinky Blog Hop


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

Thursday, August 27, 2009

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.

Wednesday, July 15, 2009

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.

Tuesday, July 14, 2009

The Winner IS.......

The winner for the drawings are as follows:


A: Joyce
B:Leigh
C:Heather


Make sure to get with me about where to send the prizes. My email address is ashleysaper@gmail.com! Thanks so much for playing, and the theme we chose is Curious George.

Monday, July 13, 2009

Blog Hop!

3 Things you didn't know about me

  1. I am a very picky mother. My children are sheltered to say the least. I do not allow television Monday through Friday for my children, and candy is very seldomly allowed either. I even dislike it on holidays. I have no idea why I am so stuck in my ways about these things, but I'm glad that I am my kids find other things to do rather than sit on the couch and watch television.
  2. I do not eat breakfast, and if I do it's not your traditional breakfast. It's something quick like a candy bar, or banana, or even a plate of dinner reheated from the night before. ha! But yes my kids do eat a good breakfast.
  3. I'm very good with numbers, I do a very good job balancing checkbooks, and preparing a budget. Now sticking to that budget, no way! But I can do someone else's no problem!! I would love to be an accountant. But I do have a little OCD when it comes to numbers. It's odd and I can't really explain it but I am always adding or pair numbers together. It's weird.

Be sure to join in on the Blog Hop!! have a great Tuesday. Make sure and enter my drawing it ends Today around 11am!! It is a few posts down.

MckLinky Blog Hop

Not Me! Monday


If you would like to join in click the Not Me! Button and begin! MckMama is hosting and it is always fun to see what others moms did not do!

I did not Allow Princess to wear a gymnastics outfit and cowboy boots to swim in last night.
I did not go to garage sales on Saturday and buy two of these wonderful cars so that we would have a little less fighting in the yard. Nope Not ME!!
Also while out at said garage sale I did not buy a baby sling when my child is almost two and expect him to be a happy monkey in it! No way! I also did not tell my neighbor what I had not done and then get exicited when she offered to loan me her very pretty one instead. I most certaintly did not borrow it for the next few wekks and put monkey in it first thing this morning. Oh and I do not plan on taking it to the doctor with us today! Nope Not ME!!
Have a great Monday and a Wonderful week, we are off to the doctor. Don't forget to enter in the giveaway below. It ends tomorrow!!! Good luck!

Friday, July 10, 2009

Birthday Party Dilema

**UPDATED**
It will end Tuesday July 14th

I have two birthday parties to plan and set up for in August, I'm starting now because, I am leaving on July 24th and will be in Alabama until the day before Princess' party on the 8th. Anyways, Princess is doing Disney Princess (yes again!) I can not change her mind for anything. Monkey of course can't tell me what birthday party he wants, and since we do not watch television Monday through Friday and on the weekends we are sooo busy we don't watch television then either, he doesn't have a favorite anything. He loves cars, elmo, and eating.ha! I have several ideas and I want to get your opinion, which one do you think would best suite Monkey? Please help me! I have less than two weeks to get this done, because once Princess' birthday comes, we have school starting then Monkey's. So here are some pictures of what I'm thinking. Tell me which one you like by the number. I will pick a winner at random . So here are the rules:

Enter one time and tell me which birthday theme you think would be good (1-5) and which item you would like be entered in the drawing for (a-c). I will pick a winnerTuesday morning and announce it on my blog, so be sure to check back around noon Tuesday 7/14/2009 to see if you won. If you pass the word on that I'm having a giveaway, you can enter a second time as well. Pass the word on through email, blog, myspace,facebook, twitter, phone, how ever you want to! Thanks!!

1
2
3
4
5


Here is what you could win:
A

B

C

Thursday, July 09, 2009

http://cochranquads.blogspot.com/ Check out Sandra's blog, she is giving away some really great items! It is her 100th post, and she has so many drawings for you to be entered into! She will close the drawing on July 14th so be sure to stop by her blog today to be entered!! Have a happy Thursday!!

Tuesday, July 07, 2009



DIGITAL CAMERA

This is my favorite photo this week. It is monkey from Doogoland. He LOVED the slide! Go ahead and join in to the Blog Hop!


MckLinky Blog Hop



Monday, July 06, 2009

princess swimming




I'm following MckMama and posting Not Me Monday today.

On Friday night when we had a party for the hubby's grandparents 50th anniversary I was not so thrilled with how beautiful I thought I was that I took 15 pictures of me on the way to the resturant, and then when I got home I most certainly did not have princess take pictures of me at 11:00pm because the hubby was already sleeping. NOT ME!!



I also did not let princess take a picture of just my shoes (because she wanted to) and then post those on Myspace. NOT ME!

While on a trip to Doogoland I did not let monkey run around with only one shoe on. I would never let him run around like a crazy child. NOT ME!


Hope you enjoyed! If you'd like to join in click the banner above! Thanks!

Don't forget you can ask me any questions. I'll keep it open until tomorrow.





Monday, June 15, 2009

Galveston Pictures













Friday, June 12, 2009

A Weekend Away



This is where we will be this weekend. I can not wait! We are going to Kemah Texas. It is about 45 minutes north of Galveston Island, and has a very nice boardwalk. We hope it will be fun! We will also be going to Moody Gardens in Galveston.princess and monkey have never seen the beach so this should be fun! I will take lots and lots of pictures!!! Have a great weekend

Wednesday, May 20, 2009

I'm still alive

Sorry I haven't posted in FOREVER! I've been super busy. This is our Teacher Appreciation week since the darn swine flu cancelled ours the first week of May. We have had such a blast working our butts off for the teachers, and the LOVE it to say the least. I'm so happy to make them happy, that is what I'm there for.

monkey had his checkup Monday and everything looks great. The 6 weeks of antibiotics is done and the sinuses are clear! YAY! Now we will began the thin liquids through a spoon on Speech Therapy days, and see how that goes. As long as there is no pneumonia then we do not need to go back the the lung doctor for 6 months. I'm thrilled and hope this fixes his problems. Another speech therapy note is that princess will graduate Speech Therapy on Thursday in one week! I'm so very proud of her. She has worked so hard and we will be having a little party for her on that day.

Today is speed racer's 7th birthday. I'm so amazed at how much he has grown!! I can't believe that my baby is 7!:( He leaves in a couple of weeks to go to St.Louis for the summer, and his dad has lots of fun things planned, so hopefully he will have fun.

Not much more going on, maybe I can blog more later when the school year is over!!! HA!!

Thursday, April 16, 2009


This is a video from Anthony talking on the phone. If you listen closely you can her his lips smacking between talking. He is something else! The rest is Abigail's first night of grmnastics. Enjoy!

Sunday, April 12, 2009

Friday, April 10, 2009







Tuesday, April 07, 2009

doctors visit

Well the doctor's appointment went perfect!! Thanks for everyone's support. We got there and his blood pressure was a little high, but they think that was due to him being mad. No big deal. I went in prepared with my manilla folder full of information about his problems, pictures and tests they have done so far. The nurse actually listened to me and asked to see the papers I brought. She read through them and asked further questions, no one has ever done this. I was so happy, yet still anixous to see if we would get answers. Then the nurse said here is what we are going to do. I want to do another test for CF (cystic fibrosis) because the place you had his taken at is NOT a CF hospital, therefore the test was probably not accurate. GREAT. So the nurse came in and started that right away, meanwhile the doctor came in to see us during that, which was sooo nice! The test takes about 10 minutes to prepare the area, then 30 minutes for the things to collect sweat. The doctor said lets finish this test, then go down for xrays and blood work. He told us you will have a plan before you leave here as far as what we will do next. He ordered an xray of his sinuses, and tons of blood work. The blood work was done for many reasons, but also for further CF testing because they didn't get enough sweat. Those results will take up to 4 weeks. The xray showed SEVERE sinsus issues, he said it was pretty much absessed throught his sinuses. So the diganosis is that monkey probably had a sinus infection early on in life that went untreated (not on my part) or missed, which has trickled down the airways to cause frequent infections. Then from being so sick for so long and no one figuring it out, we think his swallowing is from that also. Imagine being sick and stuffy nose for 19 months. How would you feel? Wobbly? Tired? Wheezy? Unable to swallow well? Yeah! So pretty much we have Chronic Sinusitis, and Asthma. We have started a 3 week minimum and 6 week maximum course of antiboitics. This is for the sinus problem. Then we started a breathing treatment twice a day and throught the day as needed for being "winded". We also got a "spacer" inhaler for on the go. So we will go back in 6 weeks and recheck his sinuses. I'm so relieved and happy that I kept pushing and never gave up! I knew something was wrong!

Also remember the playpin I complained about collapsing? I pushed for it to be recalled...well it was finally! YAY!

Monday, April 06, 2009

Again...

monkey has pneumonia...again. This is no kidding the 6th time since January 15th! How much more can my baby take? Today he is making a high pitched squealing sound and turning purple (during the sound). Yet, no one seems concerned. We took him to his doctor today and she said oh, well a pulmonologist needs to see him, but I can't get you in any sooner than he is. (we are scheduled already for April 27th). I called the pulmonologist and demanded that he be seen asap! They took me seriously and put him on a "red flag" cancel list. So once they have a cancellation they will call and put him in, and you know what? That means he will be seen tomorrow morning at 9:30 am, because they had a cancellation! YAY! Maybe we shall have some answers. I'll try to post tomorrow after the appointment.

Tuesday, March 31, 2009

video
These are from princess' ballet recital last week, not as good as last year, but she still had a good time.

monkey's appointment with the new doctor went ok. I'm not thrilled with her but I've realized I Wont get a good doctor. She agreed that there is something going on and like his previous peditrician she too believes that he has cerebal palsy. The only thing is that a neurologist has to determine that and NO ONE can get him in until October!?! He will not even be able to have an EEG to rule out seizures until then! This is crazy, but I've realized all my fighting and whining is doing no good. He is a very active young boy, and I'll take each symtom that comes, if it gets worse then we will go from there. I've lived with the purple lips, rashes, fevers, and aspiration for 19 months whats another 7? I've just got to watch my eating with all of this, I have gained about 15 lbs. At first it was a little hear and there, now I'm up to 15! So maybe I'll take up running?hmmm.

Monday, March 23, 2009

Ok I need help....

















monkey has had many problems since birth. Most of you are already aware of this. However, I am so un-lucky when it comes to finding a GOOD pediatrician! I find great OB-GYN doctors but horrible pediatricians. Please pray this changes today because after calling around for two hours this morning, and being told "Honey your son has too many problems for this doctor to handle, how about trying this doctor." I was at the end of my rope and had one more doctor left on my list of gazillion to call. This doctor is willing to take him, all symptoms in tow. And she got him in this afternoon at 3:00! I'm so nervous yet ready for SOMEONE to give me some answers. So the reason for this post number one is prayer, please pray that this doctor will have the wisdom to look at all the symptoms together and find out what's wrong. Also that she will point us in the right direction. Second is because I want to know if anyone out there knows what might be wrong with my baby. I am going to post some of his history here and please pass this blog along to whoever you might know that could be of help. I want some answers!














  • I delivered monkey at 35 weeks gestation. He was actually the size of a 32 week baby because he did not grow after 32 weeks. We don't know why he stopped, we just know he did. We were aware of this pre-delivery. weight:4lbs 13oz. 17 3/4 inches.

  • He immediately had breathing problems and was not allowed to be in the room with me for about two days. They never had to do anything for the breathing problems just monitor him. He then wouldn't eat much, and was not keep up his body temperature and had to do that before coming home three days after birth.

  • He always sounded "nasal-y" while taking a bottle. This was immediately after birth. He always sounded like his nose was clogged.

  • He ate very fast and often choked on the formula.

  • At age two months we noticed that he had what appeared to be seizures. He would roll his eyes back in his head, his eye lids would shake, and one arm or leg would also shake.

  • At age five months he got the flu, which is when all of his sicknesses began. He then got pneumonia (6-10times), bronchitis(3 times), RSV, the croup and many upper respiratory(maybe 4-6) infections.

  • He has only had ONE clear chest x-ray in 18 months, all the rest have shown infiltration.

  • He did not hold his own bottle till age 14 months.

  • He did not walk without support until age 18 months.

  • He had a swallow study done in October of 2008 which confirmed that he aspirates or penetrates every liquid that he swallows. He began oral and motor therapy at that time.

  • He began physical and occupational therapy at about 14 months for the upper weakness.

  • He gets very winded with activities.

  • His lips turn purple-blue several times a day, nothing else is purple-blue, just the lips

  • He breaks out in a weird rash (not eczema) 6-10 times a month.

  • He has frequent high fevers that range between 101-104 (this happens 1-2 a month)

  • At birth he was at the 3% for weight, then 1mth-3%, 6 mth-26%, 9mth-34%, 1 year-23%, 18 mths-8% (that's a big drop from 23% to 8%)


  • Had one day where he smelled bad....not body odor bad, it was a weird foul odor that came. He had just been bathed the night before, no diarrhea or throw up and the smell just disappeared a few hours later.

p>







These are the tests they have run, and the problems we KNOW he doesn't have:




  1. EEG as an infant-normal

  2. Chest x-rays- only 1 was normal

  3. blood work -mostly normal

  4. urine sample- normal

  5. EKG-normal

  6. Echo cardiogram-normal

  7. PH probe(acid reflux test)- normal

  8. EGD (biopsy of esophagus, stomach, small intestine)-normal

  9. Sweat test for cystic fibrosis-inaccurate, no answer

  10. MRI-normal

So does anyone have a clue what could be going on?






I know the symptoms are crazy and all over the place, but that's what is confusing to us also. Thanks in advance to anyone that can help.

Wednesday, February 18, 2009

Red Envelope Day

Everyone should do this. I will be going tomorrow and buying as many red envelopes as I can. This is very important to me, and I want to do everything I can to make sure another baby is not murdered. This might help. Pass this on to whoever you think will participate! Thanks!

We have a lot going on here. monkey will be having surgery in about a week and a half, and I go to the neurologist tomorrow. I did see a doctor about my depression and anxiety and I am now on medication for that. I'll try to post later about what is going on. Thanks

http://www.redenvelopeday.com/

Thursday, February 05, 2009

Good Ole' President, Huh?

WASHINGTON, Feb. 4 (UPI) -- U.S. President Obama signed into law a bill expanding a popular health insurance program for children Wednesday, calling it a first step to healthcare reform.

"This is a down payment on my commitment to cover every single American," Obama said before signing an expansion of the State Children's Health Insurance Program to roughly 4.1 million children who currently aren't covered by health insurance. The bill extends the program until 2013.

The additional $35 billion in costs would be funded by a 62-cent increase in the federal tax on cigarettes, which was one of the differences between the Senate and House bills. The House version included a 61-cent per-pack tax hike. "It is just one component of a broader effort to bring our healthcare system into the 21st century," Obama said of the state-run, federally funded program.

Obama used the signing ceremony to urge passage of his economic stimulus package. Healthcare initiatives contained in the stimulus package moving through Congress include computerization of medical records and extension of health insurance for the unemployed "so workers who lose their jobs don't lose their healthcare, too," he said.

The SCHIP bill also allows states to use federal funds to provide healthcare coverage to children and pregnant women who are in the country legally -- a provision most Republicans opposed -- amending current law that mostly bars legal immigrants from receiving State Children's Health Insurance Program coverage until they have been in the United States for five years.

Now I must say that I agree with all of this, up to providing for the families here illegally. I do not agree with that! Men come to the county and then bring in their families and have children so that they then can be made a legal citizen through their children. This is wrong! I am for people coming to our county the legal way! I do not think that our government should now fund for these babies to be born and have healthcare when their parents are illegal. There are so many of them that will now be covered and you know what that means more americans, who were born and raised here, will loose our coverage. Chris and I do not have healthcare, we go to a local hospital that has a healthplan we pay little for, and we are covered only at that hospital. However our children do have the state insurance that we also pay for.

I remember when I was pregnant with princess' and her biological father walked out on us, I was put on complete bedrest due to a staph infection that lasted three months, the first three months of my pregnancy. At that time I was in an apartment and was unable to work with a doctors order, I was unable to finish my school, and I needed help. I remember going down to the welfare department for the first time in my life and trying to get some kind of help with food stamps. I was told that I made to much money, 400 a month child support for speed racer. The lady looked at me and said "Honey don't you have a mom and dad that can help pay your bills?" I started crying and turned around to walk out of the room when I looked around and saw probably 15-20 mexicans who could not even speak enough english to talk to the lady at the desk, they had a person translating for them, and they were there to get their monthly benefits. I was floored. Her I am pregnant on bedrest, which means I CAN NOT work even if I wanted to, and I can get no help. But these people can and they are not even legal!

Tuesday, February 03, 2009

speed racer with his new bike
Princess getting her first pedicure
Her first manicure

And her purple fingers
Her beautiful red toes :)

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