Super Mommy's World

Why does time go so fast?!

2010-10-12T07:55:00.000-05:00

This year has just flown by-it seems like it was just July and here it is the second week of October! We have been really busy with all of the boys.
Connor got his cast off his leg but he still walks like he just rode a horse all the way from Texas! The nurse told us that he would walk funny for a couple of months and she was not kidding!! Connor goes back to the orthopedist this week to make sure that his leg is healing okay. Connor also turned 7 last week Tuesday~he is such a big boy now. It is hard to believe that he was ever in the NICU or so sick! He is just a bundle of energy now!! He loves his DS and X-Box and is always excited about school.
The doctors started TPN feeds on Danny 3 weeks ago. He has been home for two weeks and we are slowly getting into a routine. He seems to have more energy now since he is getting enough calories but I am just so worried about the trade off. I hate to think about what the TPN may be doing to Danny's little liver but I just have to trust the doctors. I just can't wait for him to be back to the little ball of energy he was before he got so sick. It is hard to remember how he used to be sometimes because it seems so long ago. It is just not fair!!!
Anyway, I am hoping that we go to Columbus, Ohio soon; we are just waiting on everything to be set up before we make the long trip there. Hopefully, they will be able to give us the answers that will fix my little Super Danny!! On a happier note, Super Danny will turn 5 on Thursday the 14th! He wants Iron Chef movies for his birthday! He loves the Food Network now-he discovered it in the hospital and now he watches the channel non-stop! It is so cute! I think that he is going to be a little iron chef one day!
Well, Dillon is Dillon-I am not sure what is worse my teenager or my 2 year old?! I think it is a toss-up depending on the day. Dillon got his first bike and already thinks he is Evil Knievel-I see lots of ER visits in our future!!:) He tries to ride Christopher's big bike and he is only 2!
Christopher "Tank" is playing tackle football for the first year this year! He is really good and with his size he can go far if he puts his heart into it! His team has given him the nickname Tank-he is big! Right now, his team is one game away from going undefeated this year-he is so excited! I am so proud of him. When I look at him now, I can't help but smile when I think about how tiny he was when he was born. He was the smallest of all my babies-only 5lbs 6oz and now he is as big as his dad!
Oh how the time has flown by! It makes me want to cry when I think about all of my babies growing up-where did the time go? I wish it could just stop for a little bit so I could spend more time with them while they are little, when they still think their dad and I are cool , I am still Super Mommy in their eyes and they believe that we can do anything!
Wow, I so didn't want this to be depressing but I am tearing up as I write this so I am going wrap it up because I have to go wake up my little troopers for another great day in Super Mommy's world!

What's Been Happening!

2010-09-11T06:53:00.000-05:00

I have not posted in so long for a few reasons-we moved into a temporary home, I started homeschooling Connor and little Danny has been in and out of the hospital since July.
Danny has lost weight-he is down to 25-26 pounds, he doesn't tolerate his feeds now, and he is always so tired. It is hard to imagine that this is the same little guy that was unstoppable last summer! The doctors think that Danny has some motility issues-on top of everything else and he is waiting to have motility studies now. I think that he is going to begin TPN feeding (again) next week-he is only getting in 600-850 calories a day and that is not enough to gain weight. This is probably the hardest thing that his dad and I have had to go through. It has gotten pretty tough to see him almost wasting away to nothing. I can't really think about it to much or to long because it is just to hard.
On another note, I have started homeschooling Connor and Danny (when he wants to cooperate). I do have to note that even though Danny is so run down, he still has his strong attitude and temper-which is a good thing!! Connor is really excited about starting school because he loves to learn. I will go into the why and curriculum that we are using later.
I think that we will finally be buying our house and moving for good-YAY-this month! I would love to be moved before the boys' birthdays next month. I know they are all excited-even Roxy!
Well, Super Mommy alone time is over now! :)

Trying to Stay Positive~Much Easier Said Than Done!

2010-07-16T08:17:00.000-05:00

I have always tried to be positive and make the best of a situation but it is starting to become so difficult! We moved again-Howells was a horrible town! We moved to Norfolk in order to be closer to my husband's job. When we lived in Howells, he had to drive about 50 miles one way to work every day. It was hard on him and our kids so we moved into Norfolk.
Since we moved, my husband has worked pretty much non-stop. His children don't see him, I don't see him and all the responsibility of the unpacking and moving details falls on me. I feel so trapped and frustrated. He gets off work and then sits at his shop and drinks a couple beers (at least) before he decides to come home-usually sometime after 10pm. I know that I should be grateful that he is working and his job is secure but sometimes it just doesn't seem fair!!
I am so alone here, I don't know anyone and I can't really go anywhere with all of the kids. Sometimes I really hate my life. That seems horrible to say because I love my kids more than anything but I really need a break!!!! I go from 5 am until at least 9 or 10pm with the kids everyday-even when my husband is here I am still the one who gets up with them and puts them to bed.
My husband doesn't seem to notice what I am going through or maybe he just doesn't care. I don't want to make him feel guilty because I know that he really likes his job and the people that he works with but something has got to change. I don't know how I can go on like this!
Sometimes I wish that I could just leave-just walk away from everything-my kids, my husband maybe even my life. I hate feeling like this. I just want to be happy again but I feel like I have lost myself-like I don't even have an identity anymore.
Oh well, it is time to suck it up and shake it off because the kids are up and they are expecting Super Mommy and I can't let them down!

Rain, Rain Go Away!

2010-06-15T13:40:00.000-05:00

OK, I had just started this entry about the flooding here in Nebraska. I considered my family to be lucky, although we live in the flooded area, our home has been spared because we are on a hill.
Then my husband called from work-he had some bad news. Both of our vehicles are at his job right now-long story-anyway, he called to let me know that the city that he works out of is evacuating the area around his job. The Elkhorn river is out of it's banks and it will be flooding his job-where both our vehicles are-by 7pm tonight.
Great!! The roads between our home and his town are water covered so there is no way I can get either of our vehicles so now I guess I wait and see. My husband is working out of town so there is no way that he can move our vehicles-so if his shop floods-so will our vehicles.
Of course, losing our vehicle is nothing compared to all of the families in our area who have lost everything.

Swagger Wagon-Cute Commercial or Racist Propaganda?!!

2010-05-18T12:19:00.001-05:00

I was having just about the worst morning ever and then I saw this ad-I couldn't stop laughing! It is so funny-I think because it is so true.
When I found the ad, I read that some people are calling it racist-I don't see why.
Why do people have to throw race into every single thing? What happened to the days when things could just be what they were-with no hidden meaning or racial undertone? It seems like today people look for a hidden agenda or bad motive in everything. I think the world would be a much better place if everyone would start just letting some things-like commercials or movies-just be what they are--entertainment!

We Figured Out What to Do!

2010-05-05T16:21:00.000-05:00

Well, after much discussion about whether or not to homeschool our son, we have decided take him out of public school and homeschool him. I plan on working with him over the summer to make sure that he is ready for starting 1st grade material in the fall.
Last night, we went to Connor's spring concert and it was very cute! I was very impressed with the music program that the school has here and it made me second guess our decision to take Connor out of school. That feeling didn't last long because when I got home, we opened the IEP we had received in the mail earlier. It said that Connor's speech was only intelligible to strangers 10-15% of the time. That was kind of surprising since his teacher-who had known him for a couple of weeks-reassured me that she and the para in the class didn't have any problem at all understanding Connor. I am kind of confused-do they understand him or not? I think that they said they understood him at the meeting because I was asking about whether assisted communication devices might be beneficial to him.
I am not sure why they would say that if it wasn't the case-maybe it is because they don't want to pick up the expense for the assisted communication devices. I don't think it really matters anyway-Connor will be out of the school system in less than two weeks.

What to do? What to do?

2010-04-30T07:23:00.000-05:00

OK, before my son started kindergarten my husband and I had talked about homeschooling him but we decided to give the public school a chance. Even though his preschool said he was ready to start kindergarten in the fall of 2008, we decided he wasn't ready for several reasons, one of which was that he was only 4 and wouldn't turn 5 until a couple of months into kindergarten. The school district really put the pressure on us to start him but we held our ground and he started one year later in August of 2009. I had just
gotten my first taste of how controlling public schools can be; especially when you have a special needs child.

We had an inkling that things weren't going well at school but we were constantly reassured that he was "doing great" and "had lots of friends" by his teacher and all of the members of his IEP team. I had some doubts because of little things that he said but when I asked his teacher or anyone at the school, they brushed off my concerns and made me feel like I was wrong to even question them.

At one point, my son was coming home every day in tears and saying that kids were being mean to him. I asked the teacher what was going on; of course she said nothing was wrong-he was doing great and always happy. The school had the school psychologist talk to him to try to find out what was going on-without my knowledge. The psychologist called my home and left a message on my machine in which she said she couldn't understand what he was saying but she told him that it "makes her sad when he goes home from school and cries". I thought about pulling him out of school then but we waited since we knew we were moving!

Just before we moved I met with his IEP team and that is when they decided to tell me that there were issues with him at school but "he was ready to go to 1st grade". Then we moved....

Two weeks after being at his new school, the school called an IEP meeting to "update" his IEP. Wow, was I blindsided!! They told me among other things that he wasn't "mature" enough to go to 1st grade, he couldn't follow 2 step directions, he didn't know all his letters, he couldn't count to 20 and he needed to repeat kindergarten.

I was speechless because this was completely opposite of what my husband and I had been told for the past two years. According to the system, he had been ready for kindergarten for 2 years and now he isn't ready at all?!

Now my question is what to do? Should I homeschool him or give the school another chance? I so confused by the system-it doesn't make any sense and my son is the one who is losing here!

So today I will try and decide what the best option for him is. There are a couple of other issues and I will go into those tomorrow.

Moving to a Small Town~~A Really Small Town!

2010-04-28T19:22:00.000-05:00

Four months ago I thought that our family would be in Alabama right now-instead we are in a tiny town in Nebraska and as much as I am trying to like it---I HATE it here!!
Don't get me wrong, there is nothing wrong with Nebraska, it's just that I was really looking forward to moving back to the South. We were all excited about moving and starting over in a new place.
Things have turned upside down since February, when we found out that we wouldn't be able to move until 2011 at the earliest. All of the arrangements and plans that we had been making for the past year went out the window and we had to make a new plan. Our lease was up at the end of March so we had to move. Omaha has become so violent over the past few years, we decided that we would move to the country.
Finding a home to rent in a small town in Nebraska is challenging to say the least! It took us 3 weeks and about 700 miles before we found a cute little home in a cute little town.
Of course, all of the cuteness has worn off and I am sitting here today wondering why I ever thought that moving to a small town was a good idea!!
Oh well, I am sure that tomorrow things will seem better!:)

President Obama=Peace Prize.....Really?

2009-10-09T07:19:00.000-05:00

President Obama won the 2009 Nobel Peace Prize today. I guess I must be missing something because I haven't seen Obama do anything that is worthy of recieving such a distingushed award. How can he recieve the Peace Prize when he has American's fighting a war in Iraq and Afghanistan? He was awarded the prize because of the "extrodinary efforts" he has made to inmproving international diplomacy. It seems as though going around the world and apologizing for America not only can endear you to crazy dictators like Chavez and Ahmadinejad, it can also earn you the Nobel Peace Prize!

Omaha Moms Meet~New Group

2009-09-23T07:00:00.000-05:00

I have just finished the training to become a Moms Meet Ambassador. Moms Meet is a new group that is nationwide and will be starting groups here in Omaha soon. The main goal of Moms meet is parents(moms) supporting each other. Moms meet is sponsored by Earth's Best and KIWI magazine. I am looking forward to starting a group here in Omaha!
If you are interested in joining, please contact me @ omahamomsmeet@gmail.com.

I Hope You Take the Love With You!

2009-09-15T06:29:00.001-05:00

Last night I heard that Patrick Swayze had passed away. I was so sad. Patrick Swayze was my first crush when I was a child. I couldn't tell you how many times I watched Dirty Dancing!! I had his poster on his wall and the Dirty Dancing soundtrack in my walkman. When I was younger everyone seemed like they would be here forever and even as I got older Patrick Swayze still seemed like one of those people that would always be here-that would never get sick.

I learned in 2001 that even those who seem like they will never leave; sometimes do.

I send my thoughts and prayers to Patrick Swayze's family.
We will miss you Patrick!
We love you!

Instant Coffee=Great Taste?!

2009-09-10T12:28:00.001-05:00

I never thought that instant coffee tasted very good until I tried Nescafe. I recieved several free samples from them and I was both surprised and impressed by the flavor. I remember instant coffee tasting bland and being weak but Nescafe excels in both those areas!
My favorite flavor of Nescafe is Vanilla. The flavor is rich and the aroma smells so great! I am so glad that I took a chance and tried instant coffee again. Because I was so impressed with the flavor and quality of Nescafe Taster's Choice instant coffee, I have joined the Nescafe Taster's Choice Taster program.
I look forward to trying all the types of Nescafe instant coffee flavors and sharing my opinion of the products with you!

Free Speech and the Misinformation Police

2009-08-06T12:47:00.003-05:00

I am so outraged and in disbelief about what is going on in America today I finally had to post something about it! If anyone had told me last year that by this time this year the White House would be calling American citizens who disagree with their insane health care reform bill a"mobs of thugs" I would have NEVER believed them!
I can't believe that the White House wants Americans to report misinformation they receive about the health care reform bill. Why does the White House care what citizens talk about? Isn't this still America? Don't we still have free speech or is that taken away in the 1000 page health care bill that no one has read?
I also wonder what the White House plans to do with all of the names that are being submitted to them as people who are spreading "misinformation". Is the White House going to send the misinformation police to visit the guilty parties? What will the "misinformation police" tell the guilty parties? Will they be threatened or maybe they will be given the 1000 page bill to read so they won't spread any more misinformation? I only thought that this kind of thing went on in Communist countries-not in the United States of America.
I have never been so scared for my children's future as I am today. I am beginning to think that my children may not have the same freedoms that I grew up with!

Super Mommy!!??

2009-08-03T07:29:00.003-05:00

Well, it has been almost a year since I last posted! I can't believe that it has been that long. This year has been so crazy and gone by so fast-I can't believe that school is about to begin already. This is a big year for school in our home because Connor will be starting kindergarten and Christopher will be going to a new school! All of my boy's are excited for school to start and I have to admit, I am excited but I am also nervous for both of them!
I have several little projects that I need to get done before they start school. I am going to try to become organized-I think with four boys that is a necessity in order to maintain control in the house! A couple of the projects that I am trying to get done before school starts include finishing my household management binder, building a backpack/drop-off station, switching bedrooms to give Christopher his own room, and figuring out a way to organize Connor, Danny and Dillon's clothing neatly. The clothing may be the biggest challenge because all three of the boys are wearing just about the same size clothes.
I hope to document my journey from Disorganized Mom to 'Super-Organized Super Mommy! My three year old Danny has decided that my new name is 'Super Mommy'-I hope that he always thinks that!

Nutritional Tree-Great Natural Products

2008-11-26T07:37:00.003-06:00

I have been researching different "natural" products in an effort for finding things that might help my little guys. I have looked at a couple of different companies. The company that I plan on trying out next is called, "Nutritional Tree". I plan on trying out the probiotic products that the Nutritional Tree sells. I would love to hear any ideas from people who have used their products or know of different companies that have similar products.

Election is Over

2008-11-05T07:44:00.002-06:00

I have refrained from posting anything about the election and who I thought should win because I have always felt like that should be a person's own private decision that should not get influenced by other people's opinions. But now that the election is over, I just want to say how scared I am for my children's future!
I hope that I am wrong and that Obama will turn out to be a great president but right now, I am scared about America's future. I have always believed that if a person worked hard they could make it in America. I believe that what you make by working hard should be yours and should not be spread around! It is not right to tax people more basically because they work harder. People in America have become lazy and dependent on the government. Whatever happened to the can do American attitude? Now the only thing that many Americans can and will do is wait for the government to give them their next handout.
I only hope that in four years, the Americans that voted in Obama and gave control of the House and Senate to the Democrats will own their vote! I am curious though, who will they blame since George Bush won't be there?

Pee Wee Herman's Birthday?! Not Funny! Thank's Dad!

2008-08-29T07:53:00.004-05:00

I am still in disbelief that my little 5lb 6oz baby boy turned 11 on Wednesday! He is now a 150lb 5'6 11 year old 5th grader! Where did the time go? It seems like it was just yesterday that I was at the hospital having my first little boy. I still remember my father coming into the room after my son had been born, telling me that he was going to be special because he shared a birthday with-of all people-Pee Wee Herman! I was not amused!
Christopher was my parent's first grandbaby and they spoiled him rotten-they were allowed! Both of my parents were so proud of him! Of course, my dad had a special bond with Christopher, maybe it was because he was his first grandson or maybe it was because somewhere deep down my father knew that Christopher was the only grandchild he would have the joy of knowing! When I think of Christopher as a baby, I can't help but think about my dad. My dad passed away before Christopher turned 4. I sure do miss him.
I know that he would still be proud of his first grandson if he was still here! Christopher is such a joy-although he can be a pain-I am already dreading the teenage years! I am sure that my dad would say that is just payback for my teenage years!
I am so glad that birthday's only come once a year because even though I love seeing my babies grow up, I wish that they would stay little forever!

He Took a Cupholder?!

2008-08-27T08:41:00.003-05:00

Yesterday my landlord had to come to my house to fix the air conditioner because it was leaking. My husband and I have rented from him for over a year now and he always seemed normal, in fact, we are moving into another one of his properties next week. Once the landlord was downstairs, we were talking and then he said he needed to the bathroom-I started to tell him he could use the one upstairs, when all of a sudden I heard him start peeing!! Right in front of me!! WTF!!!!
I left the laundry room, where the air conditioner and toilet are, and went into the family room in the basement to give him his privacy. After about 5 minutes, I went back in the laundry room to see if he had finished fixing the air conditioner yet. When I walked in, he was holding the cup holder/snack tray to my 4 year old's car seat. He saw me looking at him, so he put it down. He said he had fixed the air conditioner and started to get his things together.
As he was carrying his equipment out, I noticed that he was also taking my 4 year old's cup holder/ snack tray. I was kind of surprised and couldn't think of what to say to him about the cup holder, so he walked out with it.
After he went outside, he cut down tree branches and left them in the yard and then left!
He did a couple of odd things, but I am still not sure why he took the cup holder. My 4 year old is tube fed and doesn't need the cup holder, which is why the cup holder was in the basement and not in the car. I guess I just find it weird that the landlord would take something that he knows isn't his!
But what do you do?!

What Did You Say? "Boy Hearing" Explained!

2008-08-07T21:44:00.002-05:00

Why is it that your son, or for that matter your husband, has excellent hearing when it comes to video games or hunting, yet don't hear you ask them to pick up their clothes? I used to think that my 4 son's had a hearing problem that they must have gotten from their father, then I realized that it was just "boy hearing".
You may be wondering just what exactly "boy hearing" is and does you husband or son suffer from it, too. Well, chances are they do! I define "boy hearing" as the ability for a male of any age to only hear what they want to, when they want to. Not only does "boy hearing" cause males to not hear what you say, it also gives them the uncanny ability to completely tune you out when you are right in front of them.
The first experience I ever had with "boy hearing" was with my brother. There were times that he would be so focused on either a movie or his Nintendo, that he would not hear a word that I said to him. I just thought that was how my brother was-I was wrong!
After having four boys and a husband, I have found that "boy hearing" is a common occurrence. If I ask my sons to pick up their room or to pick up their toys they suddenly go deaf; but, if I am standing outside, whispering on the phone about going to the zoo, all of my kid's suddenly appear from out of nowhere and start asking when we are going to the zoo!
You can test your spouse or son's for "boy hearing" by asking them or telling them about something that does not involve wheels or games, and then see if they respond. This test works especially well if you are asking them to help you clean something or pick up their dirty clothes. If they do not respond or act like they don't hear you, then they have "boy hearing"!
Don't worry though, "boy hearing" is really just annoying, even though it may seem as if your sons or husband has some serious hearing loss, they don't-it's just the "boy hearing"!

Saving Money on Back to School Shopping

2008-08-04T01:34:00.003-05:00

Summer is almost over and that can only mean one thing--school is starting! It is funny how the end of summer has different meanings the older you get. When you are in school, back to school is exciting and a little scary. As you get older and become a parent, back to school is still exciting but it also becomes scary-but for much different reasons!
In today's economy, having to buy school supplies and school clothes can get very expensive-very fast! I have found several ways to help ease the financial burden and save you lots of money! One of the best ways to save money on school supplies is to go to your local dollar store. In my town, it is the Dollar Tree. This might be the best store ever! You can find many of the basic school supplies that your child will need for very little-one dollar! Some of the items that I have found at the dollar store for back to school are pens, pencils, scissors, notebook paper, crayons-if you don't mind the off brand, notebooks, and binders. Many of the dollar stores rotate their items or only get a limited quantity of items. If you are looking for a specific item, it might be worth your time to check out two or three dollar store locations.
Another great outlet for school supplies is Big Lots. Big Lots is a closeout store, so their inventory is constantly changing. I have found alot of great deals on school supplies, like backpacks and novelty binders at my local Big Lots.
Of course, Wal-Mart is a great place to get great deals on school supplies. And as an added bonus, you can save gas by doing all of your other shopping there, too. The one downside to Wal-Mart is that as school gets closer, the store gets more crowded and the school supply area can become a little hectic.
I hope these suggestions help ease the pain of buying school supplies. Tomorrow, I will give ideas on ways to save on back to school clothing!
Happy Shopping!!

Randy Pausch-Goodbye!

2008-07-25T08:41:00.003-05:00

I just heard that Prof. Randy Pausch has passed today. I just want to send my condolences to his family and friends.
His last lecture was so inspiring and it is heartbreaking that such a good person is gone. I hope that he realized how many people he touched with his lecture about life. I know that I will never forget him!
My heart breaks for his wife and his children. I know how hard it is to lose your father but I am sure that he gave his children many wonderful gifts that they will treasure in their hearts forever!
I hope that God eases the pain of his family's loss!
God bless you Randy Pausch! You will be missed!

My E-bay Store-How I started working from home-Intro

2008-07-25T07:05:00.002-05:00

For several years I thought about selling stuff on e-bay. I always put it off and said that I would start as soon as I did this or that. At the end of May, I took the leap and opened my e-bay store. It is very time consuming and has been frustrating at time, but, I think that I am beginning to get the hang of it!
I opened my store, The Frugal Moms Boutique-http://stores.ebay.com/The-Frugal-Moms-Boutique, and discovered that it is not as easy as it sounded! In my store, I sell pretty much anything, although clothing-especially children's-does very well! I am trying to increase my sales and my feedback score and one day I hope to be a Power Seller. That day seems very far away, but I think with time and effort, I can reach that goal.
I will add more details about my journey to becoming a Power Seller in the coming weeks!

Here We Go Again....

2008-05-29T09:46:00.002-05:00

Well, I think that the unimaginable is happening! I think that my youngest son, Dillon, may have the same problem as my middle two boys. I can't believe that it is about to happen again! My husband thinks that Dillon has the same problem. I don't want to believe it.
Dillon has started coughing, that is how it started with the other two boys. The doctor's can't tell us why he's coughing and so the uphill battle to find out why begins. The genetics doctor's want to do an MRI to see if Dillon has the same brain changes that the other two boys have, but the pediatrician wants to wait. Of course, even if he does have the same changes- what does that mean!
I dread the next few months- I guess I can always hope that Dillon just has a really bad cold that is lasting for 7 or 8 weeks. Well, I guess time will tell.

My Special Boys- Part 2- Danny

2008-05-07T08:44:00.003-05:00

Danny is my 2 year old son. He has the same genetic issue that Connor has. Danny had his g-tube put in when he was a year old. His feeding issues started when he was about 4-5 months old. He started choking on his food and became a very messy eater. He eventually developed a cough that sounded like the cough that Connor had. He had an MRI when he was 4 months old and his MRI was identical to Connor's first MRI.
Danny had some developmental delays as well, he did not walk until he was about 18-19 months old and he did not sit unsupported until he was 13 months old. Danny also had significant speech and language delays. As a baby he never babbled. There were several times that we thought he might be deaf but his hearing always came back ok. Danny has just begun to talk. He has less then ten words but at least he is trying to communicate now.
Danny also has crying fits for no reason. Ever since he was a baby, he will cry for no explainable reason. There is nothing that anyone can do to calm him down. Eventually he stops, but sometimes that can be an hour or so later. He still has the crying episodes. It can be very frustrating because many times he will start and I have no idea about what set him off.
Danny has also been very clingy and shy. He does not like to play with other children, except his brothers and his cousin. He is scared of people, I think. He is not nearly as social as Connor is. Danny is very sensitive. Sometimes if you look at him the wrong way, he will start crying.
Around 20 months, Danny had an autism screening. The doctors did not think he was autistic but they did say he may be PDD-NOS. Of course they said that about Connor when he was Danny's age, also. I think that just means that they don't know why he acts the way he does.
Even though Danny can be a very shy little boy, there are times, especially when he is with Connor, that he seems like the most bubbly, outgoing boy in the world. Even though Connor and Danny have the same "unknown genetic disorder", I think that there are many differences, especially in their temperaments and social behaviors.
One of the things that I get told all the time is that I am lucky because my children "look normal" and that they don't look like there is anything wrong with them and they look so "healthy and normal". I am glad that they look the way they do and I am sure that the people who tell me those things have only good intentions in mind, but it really upsets me. It upsets me because I think that every child- no matter how they look- should be told that they look normal. After all, what is normal?

My Special Boys-part 1-Connor

2008-05-02T08:01:00.003-05:00

I have four children, they are all boys, ranging in age from four months to ten years. My two middle children, Connor,4, and Danny,2, have some special needs. I would tell you what their diagnosis is, but the doctors haven't been able to give them one. Connor and Danny have an unknown genetic disorder(at least that is what the doctors say right now). Right now, we are hoping that our youngest son doesn't have the same thing but only time will tell.

Connor was born prematurely at 35 weeks and spent the first month of his life in the NICU. When he came home, we thought the hardest part was over. Instead, we spent the next year trying to figure out why he was constantly coughing and breathing loudly. We thought it was because he had been on a ventilator for a week in the NICU. He had several episodes of pneumonia, which was diagnosed only by doing a chest x-ray because he never acted sick or ran a fever. Eventually, one of his doctors ordered an upper GI and the results were very surprising. The upper GI showed my son aspirating. One of the doctors told us he was very lucky because he had been silently aspirating, probably his whole life. He was put in the hospital immediately and was taken off oral feedings. He was a year old. He spent the next three months in the hospital while the doctors ran tests. Most tests came back ok, but his MRI showed that he had a slight Dandy Walker formation and extra fluid around his brain. They put a g-tube in when he was 14 months old.

Since then, Connor has had unexplained fevers, sensory integration problems, speech delays and developmental delays. Last week the genetics doctor took more blood to run some new genetic tests. I hope it will give us an answer.

I think that the most frustrating part of this whole thing is that our 2 year old has the same issue and I think the genetic doctor suspects that my four month old may have the same problem.

When I look at Connor it is hard to believe everything that he has been through because he is such a smart and lovable little boy. Connor is a very special little boy because no matter what is going on with him he is always happy.