Wow, it's been a month......

Seems this blogging thing has gotten away from me somewhat. I just logged on  by chance and realized I haven't posted in over a month. Things have been crazy busy so no pictures yet, because I have not even uploaded them to my computer yet. (As you can see, I am really on top of things these days).  We had a great Christmas. Cameron was so excited this year. He talked about Santa and told us that he said "Ho Ho Ho". He even sat on his lap, which I figured he would freak out about once we got to the front of the line. He asked for an orange bear. And Santa looked everywhere to find that orange bear since the little guy asked for nothing else and never changed his response when asked "what is santa gonna bring you?" This was Cameron's first really fun Christmas. He had a ball opening his gifts and has had even more fun playing with him. He got a play kitchen and some food and pans, plates etc. which I'd have to say is his favorite. He spends hours making us all different meals and feeding us. It's so cute.

I have been out of commission for a bit which accounts partially for my absence. On December 17th, I had back surgery. I originally had surgery for a disc issue five years ago. A disc was removed and a bone graft was placed with six screws. I have been in pain ever since that operation and finally found another doctor who said the original bone graft had never taken and two of the screws were just moving around in my back. I really had no choice but to do surgery, we couldn't leave the hardware in as it was and the pain was getting in the way of my life and carrying two kids around all the time. After a few complications and a couple extra days in the hospital, I am home. I am pretty much useless at this point. I spend most of my time in the bed or in the recliner. The pain pills keep me comfortable but drunk and the many braces and devices I have to wear every day keep me busy. My oldest, Alek has been a great help, doing a lot to help. Since I'm not allowed to pick up anything, or bend at the waist, my mom has come to stay with us to take care of the kids. Thank god for her. Without her, I don't know what I'd do. Cameron still hasn't fully understood why I can't pick him up and when he sees the 12 inches of stiches on my back he says he's scared. Thankfully this is behind me and hopefully this time it will be successfull. I am looking forward to less painful life. And as soon as I am better recovered, I'll post some pictures!

Pink Eye Again.....and other updates!

Seriously. Cameron has pink eye again. He woke up this morning with a crusted eye. So the doctor's office was blessed with our presence again this morning at their walk in hours. I'm sure they see us and think "oh no, here they come again." Nevertheless, Cameron does have an infection in his eye again. This time the doctor (not our regular doctor) gave us eye drops instead of the oral antibiotics that give Cameron terriblel digestive problems. I'm sure these will not be easy to apply, but it's better than the alternative!! He also gave me unlimited refils so that I don't have to frequent their office every week, like I have the past 3 weeks. UGH. He did say that he believes that Cameron's tear ducts are blocked, therefore the bacteria that gets in his eyes is not washing out like it should, causing pink eye repeatedly. He suggested that we visit the eye doctor and explore with her the idea that perhaps he needs to have his tear ducts probed. That sounds so pleasant, but I think that we'll try these drops and pray that the infection clears up and doesn't return.

T&A Surgery. I called the scheduler yesterday (because they had yet to contact me) and we are scheduled for T&A removal. As with everything else, they are prompt as usual. His appointment is on January 7th....! I was hoping that I would be able to have Cameron taken care of and recovered by the time I have surgery on my back on December 17th. I can see that won't happen, so pray for me that I will recover well enough to be able to stay in the hospital for 23 hours with Cameron for his surgery.

Last, but certainly not least. Sunday in our area, a young boy was killed in a tragic accident. I did not know this boy or his family (even though we have the same last name) but I want to offer my sincere sympathy to his family. This was a tragic loss and in my opinion the most awful thing that can happen. The loss of a child is my worst nightmare. And during the holiday season, I can only imagine it is much harder. I hope this reminds everyone to cherish the time they have with their children and families. Life can be cut short and you really never know how much time you have. Enjoy every day, savor every moment. Don't let yourself get too busy for the silly stuff.  

Being Thankful

Since it is Thanksgiving week, I have decided to dedicate my whole week to things I am thankful for. Today is especially important. As I hear of a young boy's tragic death nearby, I am so very thankful for my kids. And for their health. I am thankful that we have had this time together so far and hope that we can have many, many more years together.

Still no school!

Well, it's been a whole week since Cameron has gone to school. Last week, the remnants of IDA and a nor easter came through our area bringing big problems. Enough problems that schools in all the surrounding areas were closed on Thursday and Friday. I'm tellin you that having kids home during a storm only makes things more difficult. On Thursday night, I had both boys in bed with me and the B-Curtis. It seems the only one who got a good nights sleep was Rylee.

School did reopen yesterday however Cameron has been blessed with pink eye yet again. He had pink eye just last week and was treated with oral antibiotics. This week when the infection returned, I tried antibiotics but he has apparently developed a resistance to them. Terrific. So we were at the door waiting for the doctor's office to open this morning so we could get a stronger RX. Hopefully this works. I will say however that this pink eye has made my day a little less stressful since we were able to get out of therapy for both today and tomorrow. Boy, it's sad when you enjoy sickness just because it calms your life down a bit.

In other exciting news....! I finally heard back about the sleep study. I got a call this morning from the ENT's nurse saying the doc had reviewed the results and there was mild obstruction and that they would re-evaluate later for surgery. NOT! I wanted to tell them they could evaluate tonight because I was bringing Cameron to them so that they could see for theirselves what his sleeping is like. I find it funny that after everything I've told them and finding that there is obstruction whether it be mild or severe, they are wanting to do nothing. Hello, isn't obstruction not great even if it's mild? I told the nurse I was not in agreeance with this and that I would like to have the doctor reevaluate his decision now, that I was not wanting to wait to do something that was inevetible anyway. So I just got a call back saying that the doc agreed and they are going to schedule a T& A surgery. Now don't get me wrong. I don't ever want my children going through surgery, however I also don't want them suffering through treatable things and I also would rather them just go ahead and do this instead of waiting til he's older. UGH. But either way, it has worked out I guess. Tomorrow I go to the doc to schedule my 2nd back surgery which I'm hoping to get done before the end of the year. Seems I'm gonna be real busy for the rest of 2009~!

Fed Up Friday

Yes, I do know that it is Saturday but I was too fed up yesterday to post. So we'll call this "Fed Up Friday". First, I'll start by saying that many things irritated me yesterday. #1 being the post on "Tard Supper". You may have seen this on Facebook or someone else's blog. If not, here is the link http://slog.thestranger.com/slog/archives/2009/11/09/the-tard-supper

Amazingly enough, the guy who posted this is gay. I assume he is used to being ridiculed and called names, so I am left to wonder what made him feel this was an appropriate description of the artwork. Perhaps for me, it just set off a short fuse I already have for the word "Retard". I have posted before on this subject, but it never ceases to amaze me that people still use that word not only in my presence but around Cameron.  Anyway- I'll let it go, cause I'm sure this subject will be back around before we know it. (Sometimes a girl just has to vent)

Second~ It has been nearly 6 weeks since Cameron had his sleep study. I called the doc about 2 1/2 weeks ago and was told to call them when it had been 5 weeks, as that was when they expected to have the results back. I did call back on Monday, which was 5 weeks and was told that the results had just come in and they were sitting on the doctor's desk. The nurse assured me someone would call me as soon as he had reviewed them.  On Wednesday, I called back because I still hadn't heard and nope, the doctor hadn't reviewed them yet. I was again assured that when the doc arrived in on Friday, they would be reviewed immediately and I would receive a call before the end of the day. Hello- it's Saturday......! I am going to make a 3rd call on Monday, but I assure you that I won't be as pleasant on this phone call. It kills me that these doctors charge you an arm and a leg to see our children and then take over a week to just read results and make a phone call- C'mon!

 I think Cameron got tired of waiting too.

This is a special position that kids with DS apparently like to sleep in. I have other friends who say their children do this too. If you ask me, it's rather disturbing considering the fact that I can't even bend over and touch my toes, much less lay down like this. And this kid sleeps soundly like this. It's amazing.

Anyhow, now that I've gotten all that off of my chest, I may be able to enjoy my Soggy Saturday.

Cameron's conference

Today I met with Cameron's teacher for our first conference. I guess since report cards are getting ready to be issued- they are meeting with all the parents. I was very impressed with all his teacher had to tell me. First she tells me that Cameron seems to be the star of his class. Apparently the little boys fight over who will sit next to Cameron and who will help him walk to music, P.E., library etc. The teacher also told me that they call Cameron a little Cassanova. He likes to love on the girls alot. :) This should make his daddy very proud don't ya think?  All in all it was a great conference. I love to hear that my little guy is doing so well and that he is adored by everyone around him. This is a big change from the beginning of our journey with Cameron when everything seemed to be of a negative nature. I think the best thing I heard today was that Cameron seems to have a great effect on his peers. I was explaining that I think Cameron is really benefiting from being around typically developing children his age, as he seems to be working much harder to do the things they do. Her comment was this...."Cameron is really good for the other children too, they don't see him as a child with Down syndrome they only see him as a friend." She said they even take up for Cameron and say things like he's only 3, that's why he's having a hard time.

While I was super reluctant at first to send my little fella off to school, I am soooo glad I did it now. This has turned out to be such a great thing for Cameron- not to mention that he absolutely loves going.

I'm going to soak this up for now, cause I am sure things won't always be this easy!

Monday Madness

I've found that around here, everyone is nuts. I've always known that I was crazy. Now it seems that not only my kids have inherited that trait, but so has the dog. I will tell you that we were woken up early this morning to the sounds of a certain zebra flashlight. It's a very cute flashlight, however at 5:30am, little is cute to me. I was later called at work to be told that Cameron had used the potty on his own, without asking for help and when my mom found him, he was actually trying to empty the potty into the big potty like he sees me do. Luckily he didn't spill the contents! Also while I was at work, Rylee learned to roll from her tummy to her back. This amazes me. With Cameron everything took such a long time, now with Rylee I feel that I am missing things as they fly by me. Finally to end the day, I have discovered that Cameron loves Rylee's borrowed swing even more than she does......GREAT. (I guess I'll be buying Wendy a new swing...lol)

It's funny how he thinks everything around our house belongs to him. He loves the pink bobby bouncy seat the most. He sits in it to watch TV. Good thing there will be no more babies in this house cause this stuff won't make it very long.

Mondays are madness. Complete madness. I'm going to bed now, have to get ready for Tuesday.

EDIT: IT SEEMS MY CAMERA HAS THE WRONG DATE ON IT.

Hola

It's about time Cameron learned some spanish don't ya think. I've done a great job at teaching him a second language too. My method....? Handy Manny of course and did I mention the mexican restaurant we frequent just across the street. Cameron is a local celebrity at the restaurant and since it is close (and there isn't much else to choose from nearby) we spend quite a bit of time there. (I promise it has nothing to do with the fact that they have great margaritas..) Cameron has now picked up hola and says it repeatedly to everyone who walks by us! They love it. In fact, the waiters bring Cameron special things that they never charge us for, they even take him to the kitchen to pick out his food. Apparently though, all this attention and learning of a new language have worn him out. He actually fell asleep on the table. Good thing I carry a camera in my purse at all times! This was clearly too good to miss.

Guy Sandwhich

Yesterday we had a super busy day. Wednesdays are always busy, but this day started very early and we started our day with Aquatic therapy at 8am. That was followed by Speech at 9, Cardiologist at 10 and finally PT at 11. Lucky for me, Cameron's therapies are all done at the same building where many of his doctors rotate. We don't typically do this many appointments on one day however it just kind of happened because of some scheduling issues and the fact that I can not take Rylee into the hospital with me for Cam's appointments.

By the time Cameron had done therapy in the water and had an hour of speech he was a little less than eager to visit with the cardiologist. That is surprising, right! He allowed the nurse to weigh him (he is 31 pounds) and they checked his blood pressure. That is where his cooperation ended. He acted so crazy when they were trying to do the EKG that they had to stop. The doc says he's not too concerned because Cameron doesn't exhibit any signs of distress.  He listened to Cameron's heart and lungs etc. all while I had his arms pinned behind his back and my leg holding down his legs and of course him bellowing. When the doc stood up and the tears stopped Cameron held up his fist and said "Guy Sandwhich". The mothering side of me had to scold him for this. I didn't allow the nurses to reward him with stickers because he had not cooperated and had even been rude to his doctor. Cameron knew he was in trouble but I have to admit that I was having a terrible time keeping a straight face througout this. I can't help but laugh when he's not around at the things he is picking up and they come out at the most unexpected times.

And just for the record........his nanny taught him about the knuckle sandwhich. Not me.

Crick or Creat

This was really the first Halloween that Cameron has been able  to enjoy. He has gone every year since he was born, but this year is he is talking and finally he is walking. The costume he is wearing is actually too small but he tried it on in Target and then just had to have it. The hat has been worn all over the house ever since and we've all been laughing at him. Little Rylee got her costume compliments of a good friend who has everything anyone could ever need. Whatever I'm in need of, I just need to tell Wendy, cause she either has it or knows how I can find it.....! You'll notice that my oldest child is not present in these pictures. It is not because he has had the swine flu (cause he was better), it is because he refused to wear a costume and then proceeded to trick or treat without one. My neighbors are obviously better than I am- I wouldn't have given him any candy. I did tell one lady who asked what he was, that he was dressed as a pain in the tail. He is enterering those pesky pre-teen years that are not so fun, and which also lead to the real not so fun times, teenage years!

Despite that hot weather (I think I'm entering menopause since I cannot deal with heat lately) and the rain, we had a terrific time. We pushed the two little ones around in the double stroller in our neighborhood which was great. The houses are very close and the driveways are short. Cameron walked up to every door and said "Crick or Creat". He even started to do it without my prompting and of course used his manners and said thank you too! Everyone he met thought he was just adorable.

We did quite a few houses in our area (filled up both boy's buckets), then trecked the few blocks to the in-laws house for a visit. Cameron wanted more trick or treat so we went a few houses down and Cameron was able to visit with an OT therapist that treated him when he was an infant. I don't believe he remembers her but she loved to see him and was so proud at all he has accomplished.

Now on to our pre-Halloween foolishness. Earlier this week, Cameron came into the living room like this.

It's a piece from the mister potato head set we have. He was actually just holding it there but I thought, why not tape it there for some real fun. The fun didn't end there either. Cause ya know I had to try it out.......

I look terrible and that has nothing to do with the mustache. But it was all good fun either way. Wait to Robert sees this.

Enjoy!

21 Things About Cameron

Okay, so I stole this idea from someone else (sorry Beth) but it seemed like a good idea. So here goes. 21 things about my little Cam.......

1. Cameron only weighed 5lbs, 4oz when born
2. He had heart surgery at just 6 months
3. Although he has 47 chromosomes, he does incredibly well
4. Cameron recently got a dog who he calls Bee Curtis.
5. He goes to school 3 days a week
6. He goes to 4 different therapy appointments a week.
7. He has many nicknames including, Cam, bird, scooter, and sweet baboo.
8. Cameron is a nanny's boy
9. He is a great little brother and a very loving big brother.
10. During a recent fundraiser, Cameron learned to say very clearly "Guys, Beer"
11. While his speech may be delayed he is very proficiant in any "ugly" words he happens to over hear.
12. Cameron didn't start walking until 3 1/2
13. He has been known to go outside on his own saying that he is going to WaWa for coffee.
14. Cameron loves books. He can sit forever and look at books.
15. He loves to have his picture taken and many times will smile a goofy fake looking smile when he sees the camera.
16. Cam's favorite show is Mickey Mouse Clubhouse on Disney, and he also likes Two and a Half Men.
17. He is able to tell us where to turn in the car to get to certain locations. Mostly restaurants but also Nanny's, Grandma's and other friends's houses.
18. Cameron doesn't sleep well, but is rarely in a bad mood.
19. He loves to ride his bike (which I will add that we have to push while he steers and we spend a lot of time heading toward the ditch)
20. Cameron is a great dancer. He knows how to raise the roof, bring it back down and walk like an Egyptian.
21. Most importantly, Cameron is a loving and energetic little boy who brings absolute joy to all those who are lucky enough to be around him.

Will I Ever Sleep Again?

It has been three weeks since that dreadful sleep study. And one thing is for sure, Cameron is definitely not sleeping now. I know he didn't sleep well before but things seem to have gotten far worse since the study was done. I'm sure that this is coincidental, probably things are worse because the weather etc. Cameron fell asleep at 8:00pm last night and I therefore, stupidly assumed that I would get some sleep. HA. Silly me. Cameron woke up at 11:00pm, crying because I had put the gate up so he couldn't get out. I did the stupid thing, because of lack of sleep, and put him in bed with me. (This has been a common occurance for at least the past week). And to say that his sleep is terrible is a complete understatement. He sits, he rolls, he gets up, he snores, he lays back down. He lays on me. It seems the only way he would sleep was if I held him.....and guess what, that prevents my sleep. I did call the ENT last week to stress that we were really having some issues now and they are supposed to have his study results within the next week or two. Sure that isn't that long if you are sleeping, but without a good night's sleep, I could quite possibly go postal. That ENT could expect to find me waiting at his office for him one morning demanding that either the tonsils be removed or this kid is going home with him for a night. :) I would love to say this is me joking, but for goodness sake- GIVE ME A BREAK!

Signed: Sleepless

3 Months Old today

Boy time flies. Today Rylee is 3 months old. She has changed so much. She is smiling and even giggling, and lucky for me- sleeping much better. Yee haw!

And as for other current events. My oldest and sarcastic son, Alek left me a message in the bathtub. He has used the letters we bought for Cameron to play with in the bath and left the following....

I couldn't help but laugh when Robert called me into the bathroom to show me this. Alek had already left for school so I decided to leave a message back. I didn't tell him my message, I just waited for him to get in the bath that night to find it.

I didn't actually ground him for it, but it was fun to hear his reaction when he thought I was serious.

5am conversations that make you laugh

Cameron arrived in my room this morning at 2am. Yep, 2am. Now that he opens doors with no issue, there is no way to keep him in and when he has his crazy wake ups during the night, he just leaves. He did however go back to sleep in my bed which meant I didn't. We had feet, elbows, knees and at some point even his head pressed into the lower part of my back which is already under construction.

At 5 he decided it was time to get up and wanted me to do the same.

Cameron: UP
Mom: No buddy, it's still dark
Cameron: OOOOOK
Mom: rest
Cameron: Snore. Ba BA BA (he pretends to snore) Awake.
Mom: No Cam, it's time to sleep.
Cam: oooook. Hold you. (which means hold me)
Mom: Okay
Cameron: Rylee?
Mom: She's sleeping
Cameron: Oh Gosh

After this, I laughed because I couldn't contain it anymore. And as you all know, once you laugh, you may as well just give it up because he then continued to do this same thing over and over until we did actually get up.

October is Down syndrome Awareness Month!

I thought that since it is Down syndrome Awareness month, I would take time to reflect on my experiences as a mom of a child with Down syndrome.

My story begins a little over 4 years ago when I first learned I was pregnant with my second child. We were very excited to be having a baby and since our other son was already 6, it seemed like it was now or never. Now don't get me wrong, we didn't necessarily plan the pregnancy, but we really don't plan anything in our lives. 12 weeks into my pregnany I began bleeding heavily and I was convinced that I had lost my baby. I hadn't of coure, but throughout my pregnany this continued and I spent many hours either in the doctor's office getting ultrasounds or on the phone with the docs. I even went as far as to rent a fetal heart monitor so that I could make sure that my baby was ok at home. I became obsessed with making sure my baby lived.

Funny enough when I delivered Cameron at 35 weeks, all of my fears disappeared and I was delighted that I had just given birth to a beautiful "perfect" baby.

It's funny now when I think back to the next day. The day after Cameron was born. The day my life fell apart. I won't go into detail of my breakdown. I will however share my initial fears. Fears of putting this burden on my older son, worrying that I would never not have a child in the house, scared of what people would think and most scary to me was the knowledge that I just simply couldn't take care of this baby. Now this is funny to me now only because I have the knowledge now that I didn't have then. So I'm able to look back and think "how foolish".

When your baby is suspected of having Down syndrome, the docs tell you but you just cannot fully believe the diagnosis until the chromosome testing is completed. In our case, this took roughly a week. (I say roughly, like I don't know that it took almost exactly 168 hours for the actual results. ) After a rough week of disbelief and pure depression I decided it was time to take action. For the first time in my 25 years of life, I prayed. And I don't mean, the kind of prayers many people ask for, a new car, a better job, the right man. I actually prayed for strength. Strength to get me through what the doc was going to call and tell me in a short while. Now I don't claim to know what the higher power is, but I do know that there is a higher power. And on that very day, the very day that I gave up the fight of trying to change Cameron, I was given what I had asked for. Strength.

I won't lie and say that we haven't had tough times. Cameron did have a heart defect that required surgery at 6 months old. And it may have been earlier if it hadn't taken him 6 months to get to 10lbs. We have had to fight serious battles with insurance companies and even the almost impossible battle of getting some type of assistance. We have dealt with stupid comments, the "R" word and the strange looks.  But we have gained a lot too. We have gained knowledge, patience, understanding, and a great love that couldn't be any stronger if this child didn't have 47 chromosomes. I can honestly say that not a day goes by that I am not completely amazed at what Cameron has accomplished and what he shows us. Because of him, we have a better appreciation for life, a stronger will to overcome and a belief that he was given to us for a reason. And even in his short time here with us, he has already taught us more than we will ever possibly teach him. He has changed our lives forever, only it's not the change I expected those 24 hours after delivery. It is a much needed change. A change for the better.

Sleepless Study

I'd like to take this opportunity to complain at the sleep study. Yesterday the sleep lab called me sayihng they had a cancellation for last night. I have been dreading doing this, so I thought it would be a good idea to go ahead and take it and get it over with before I had a chance to talk myself out of it again. So we got our stuff ready and I tried my best to prepare Cameron for what was ahead of him. He of course had no nap so he was tired. When we first arrived, he was great. He figured this was play time with just he and mom and we were gonna have a fabulous time.

Not long after we arrived they began hooking Cameron up to the many wires they use to see what exactly happens when he sleeps. Now I have to say....this is complete ridiculousness. No child is gonna sleep with this junk hooked to their head, legs, chest and neck. Shoot, I wouldn't sleep with it on. I talked him through it keeping him busy so he didn't cry and eventually we were hooked up.

Give me a break. Good grief. This is crazy. So we lay down and watched TV for a few minutes. Cameron started his tired noise and before I knew it, he was snoring. I turned the TV off thinking that maybe I was gonna get some sleep tonight. Uh wrong answer. 1 1/2 hours after he fell asleep, Cameron starts his crazy sleeping. Sitting up. Laying down. Sitting up. Laying down. Well by gosh, wouldn't you know that this was gonna disconnect some of the leads? Yep, sure did. So the tech had to come in and hook it back up which caused screaming and crying. He finally fell asleep again, only to repeat the whole process over and over again all night. I don't know what they will conclude from this sleep study other than he didn't sleep but oh well. I will say that after this is all over and he has had a bath he still didn't sleep. He was exhausted and finally several hours later zonked out in front of the TV.

He is still feeling the effects from this long night 12 hours later. And boy, I am too. This was an awful experience and to top it off, we will now wait 8- 10 weeks for results. Terrific.

What happened to nap time?

For the last several weeks Cameron has been boycotting his naps. Now I'm telling you, he needs these naps. And I think that I need them even more. Things have kinda fallen apart since he learned to open doors. Now he is impossible to keep in his room. Yesterday after school my mom sends me this pic message on my phone. Cameron, in his sweet way of playin my mom, brings his pillow and blanket out and lays on the living room floor. He believes that if he lays down for 10 minutes he will be excused from his nap. Worse than his idea, is that this actually works with my mom since she is wrapped around his finger. B Curtis wasn't misisng out on this chance to lay down and get a little shut eye. Especially since he got to lay on the pillow with his favorite friend. I will add that Cameron never went to sleep and he was hell on wheels by the time I got home. Cameron very rarely is in a bad mood even when he's tired but he gets sensitive and cries at everything. Needless to say, at 7pm it was bedtime. For Cameron and Alek, since the 10 year old decided to show his tail and talk ugly to his grandma.  As for me, I am looking for a way to keep this kid in his room for either a nap or at least some quiet time. The baby gate is great except that he stands at it and yells "mama" the whole time. Maybe a child proof doorknob is the solution??

Buddy Walk

Yesterday we went to the Buddy Walk in Virginia Beach at Mt. Trashmore. This is our 4th year of Buddy Walk and yet I'm still as touched this year as I have been the previous 3. There is nothing quite like seeing so many people with DS and their families. It's like a secret society. And best of all, you don't get any of those goofy comments or "feel sorry for ya" stares. We had a great time. The whole family went and they even had t-shirts to fit Rylee. We even took B Curtis. I don't have many photos because getting three kids and a dog ready for a walk is pretty tough and goofy mama forgot her camera. As it seems, downloading pics from my cell phone isn't the easiest or quickest thing to do. But even with all the craziness, the tunnel traffic, the long drive, and no sleep the night before, it was a great event with beautiful weather. I personally can't wait until next year so we can do it again.

The embarrassing Mother

Gosh, I remember being a teenager and being very embarrassed of my parents. I like to think that I had plenty of reason for this. My parents were dorky and they drove a dorky car. I don't remember being embarrassed really until I got into middle school which for me was around 7th grade. There were also some other issues at home with my parents that I won't go into now, but we'll just say that around this time in my life, my mom and dad were less than desirable kind of people. Still, I know that kids get embarrassed of their parents, but at 10....good grief. I don't walk around with curlers in my hair like my mother in law did with my husband and I don't pick my nose in front of people for goodness sake. This morning Alek left to go the bus stop. We can see the bus stop from our house, and he is adament that we not go with him. Since there are other children and parents there, I oblige. Today, about 20 minutes after the bus should've come, I see Alek coming back up the driveway. The bus had still not arrived. I offered to take him to school but as we were getting in the car, the bus drove by. I wanted to make sure that this was in fact his bus, so  I followed him to the bus stop. You would've thought he was late for dinner. He was  practically running to get away from me. And the whole time he was shouting mom stop. It was rather funny and because I knew it was bothering him, I followed just in spite.

I'm sure he's gonna be mad at me this afternoon, but that's ok. It's what we embarrassing parents do.

Four

Last Friday our local Down syndrome group hosted their 2nd annual golf tournament. I love working the golf tournament. It is a great fundraiser and a lot of fun. I have made it my job the past two years to drive the beer cart. I know nothing about golf, nothing except that those golfers love their beer. About half way through the day Cameron came to join me so that the golfers could see where their donations were going. As you can see, he had a terrific time riding in the golf cart and an even better time pilaging through the various snacks being transported on the cart. He even learned (on his own, I must add) that we were serving beer. We spent the afternoon driving around with Cameron yelling "guy, beer". It was hilarious although I'm a bit concerned with what the teachers/therapists that work with Cam will think when he tells them about beer. I tried to convince him that it was ginger ale but he wasn't having it.

Sleep Study take 2

As I mentioned before, Cameron was scheduled to have the inevitable sleep study. Being the tired mama that I am, I cancelled it because I just couldn't bear to deal with it last week. We have now rescheduled for October.....another Saturday night which thrills me to pieces. What a way to spend a Saturday night. So after mixed opinions from other parents, I wonder why in the world we even have to do this. So, I used the trusty internet to do some research.

First, I have found out that Obstructive Sleep Apnea (OSA) occurs in about 50% of people with Down syndrome. Well it just so happens that Cameron has Down syndrome...how bout that. The symptoms include snoring and/or loud breathing. Cameron breathes like a 400 pound man. Mouth breathing, ummm yea and waking frequently during the night or restless sleep. Yep that's Cameron. Given this and the fact that Cameron's tonsils and adenoids are very large in his tiny airways, I wonder why in the world we must subject a 3 year old and his mom to spend the night in a hospital hooked up to numerous wires where we know he will not sleep, just to find out that maybe Cam would benefit from a T&A. Uh Duh. Keep in mind that I'm no doctor, and to be fair, this is the way that OSA is diagnosed. I just feel as though we should do the surgery and remove the T&A regardless considering they measure at a 3plus on a scale of 1-4. My thought is why wait? It will probably need to be done at some point anyhow. So why not remove the tonsils and adenoids and if problems still occur then we'll take the next step. Oh well, good thing I'm not a doctor......I'm just a know it all parent.

Got my own set of wheels

Well Cameron finally got his own set of wheels. Lucky for him, this car doesn't require any gas and he is able to feel the wind in his hair. I especially like the two steering wheels, kinda like a garbage truck!

Cameron insists that we ride in this car everytime we visit Food Lion. I hate it. It's like pushing a school bus through doorway. I run into everything and knock stacks of things over. It's amusing though for my little nut. When we pull up at the register, he pops his head out of the windshield and says "ello".

Funny Business

It's so funny to look back and see how much Cameron has really grown. Last week a friend brought over a bumbo seat for Rylee. We tried it out with her and she frankly wasn't feeling it just yet.

Well Rylee may not have appreciated the pretty pink Bumbo chair, but that doesn't mean that no one else failed to find use for it.

Now keep in mind that we did not have to persuade Cameron to do this. I was sitting watching TV when a drunk walking Cameron stumbles in with this chair and has a seat. Of course we all laugh which has prompted a replay of this many times. Even so, I look back at Cameron is his own Bumbo chair and it makes me remember him when he was so small and so weak.

Week 2 at school

Cameron is doing great. Just like I knew he would. Last year, I wasn't all that impressed with the lack of communication from his therapists at school. This year I asked the teacher if it would be possible to implement the use of a notebook to exchange notes with the therapists and teachers about what Cameron is working on etc. This is working on great. Even the teacher has been sending me daily notes to let me know what Cameron is doing in the classroom. My favorite was Monday's note where Mrs. Coaty told me that they had music, Cameron made friends with some of the boys, and later had a tea party with two of the girls. I always knew my little man would be a ladies man. The teacher, whom I really appreciate even sent me these pictures ......

As you can see, Cameron feels very comfortable, which makes mommy comfortable. And even better than that is that I've only gone back to work two days a week and I've been able to be home to get him on the bus on Tuesdays. I love seeing the look on his face when that bus pulls up.

Bee Curtis

Introducing the newest member of our family.....this is Bee Curtis.

We found this dog a few weeks ago wondering the streets. I have looked in the paper and on craigslist in the lost and found ads and no one seems to be looking for him. I have seen no posters or anything. So he is now ours.

Cameron and Alek love him already. He is spunky, but very gentle with Cameron and is housetrained, which I find to be a huge plus.

As for the name. His name is Toby. He comes to Toby. But back when we had the big dog (Carl) one of Alek's friends called him Curtis by mistake. This has been a joke in our house ever since. So when this dog arrived I named him Toby, but Alek called him Curtis. Last night Cameron wanted the dog to come to him and he called "B Curtis". It was so funny that now we are all calling Toby Curtis or Bee Curtis. The poor dog won't have any idea what his name is when we get through with him.

Party at my crib

I should never be surprised at what I find when I go in to check on the boys at night. I went in to tell them it was lights off and time to go to sleep and I find them both out of their beds on the floor with all the blankets and pillows watching I-Carley. You've gotta love the brotherly love that's goin on here. It's amazing how I once worried that Cameron would negatively impact Alek's life and yet he has brought so much joy to him.  And Alek is the best big brother we could have ever hoped for. I'm so honored to have such great kids.

My Bed

This is the typical sight of my bed at night. I try to get some relax time before I go to sleep. The kids however didn't get the memo. Rylee thinks it's supper time again and Cameron is here for a play sesssion in what he calls "my bed". Not mom's bed, but my bed.

Even though I didn't get my relaxation time, I have the best time hanging with my little guy. And look how sweet.

Sleep Study

This week we had our follow up with the ENT. I so love these appointments. You wait an hour past your appointment time to see a nurse practioner and then another 30 minutes wait for the doctor to only repeat everything you've already told the nurse and nurse practioner. UGH. Anyhow. Last year the doc recommended that Cameron have a sleep study at age 3. We put that off because I was preggers and I was not sleeping at the hospital like that. (I was already mean enough) Now they are wanting him to have it done. Apparently, tonsils are measured on a scale of 1-4, 4 being obstructive and 1 being normal. Cameron is a 3 plus. So the doc wants him to have a sleep study to see if he has obstruction. OK. So I know I'm not a doc, but if we can see that the tonsils and adenoids are huge and obviously we know that Cameron makes a lot of noises in his breathing, why not just get them out. Why put a child and a mother through a sleep study when we all know dang well that he isn't going to sleep which is gonna result in an abnormal reading anyhow. Just so frustrating.

Later that night after the appointment I go into the boy's room to check on him and this is what I find. He is asleep. Feet are on the floor and head is on the bed. This is the first time I've seen him sleep like this, but he does sleep in very weird positions. LOL. I had to get the camera when I saw this. Luckily he was sound asleep and the flash didn't wake him, neither did me picking him up and putting him back in the bed.

So here's to a sleep study. Good luck studying this one's sleep. Good grief. Wish us luck. We have to go in on the 26th and I can hardly contain my excitement.

Remembering this day 8 years ago

I remember exactly when I heard the news. I was at work when a co-worker's son called to tell her that a plane had flown into the twin towers. The news of this seemed crazy but all the same just an accident. No one thought too much about it until the news came through that another plane had hit the other tower. That image of the plane flying directly into that tower is an image that has imprinted my mind ever since. That day at work was one of the quietest days I've ever experienced. With a small radio black and white t.v. set up beside my desk and the radio on overhead, we all listened as the other attacks were made. In pure disbelief we watched as thousands of people's lives were destroyed.

In the days following the attacks I spent most of my time watching the news coverage with tears running down my face. That hurt and remorse for those who lost loved ones still aches within me today as I remember that day.

While it has been 8 years, we have not forgotten, nor will we ever.

Schools on

Yesterday was the first day of school. A day that I have been waiting for since late June...! We decided at our last IEP meeting for Cam that we would let him try to ride the bus. He had been asking to ride the bus and we knew with the new baby coming that transportation was going to be a little more difficult anyway. And of couse, Robert pushed for it cause he has no idea how much mother worries about her sweet baboo. We had all of our stuff ready and had already visited the class for open house. Cameron loves the new room and all the fancy toys. He waited very patiently for the bus to arrive (in the monsoon).

The dreaded time finally came. The bus pulled right up to the driveway to pick up my precious cargo. I dredged through the river that was flowing down the driveway and took my sweetness to the school bus. I fully expected him to cry even though he had been talking about it excitedly for days. WRONG. My boy didn't have one worry when I stepped off that bus.

What a ham. I had committed to going to work so I went back inside to get my stuff and good old nanny was in tears. Good grieft mom, I don't remember you crying when your own children went to school. So off we went to the school. (Had to reassure Nanny that her boy was ok) Ok and me too. I admit I was a little worried. I waited and waited in front of the school for Cameron's bus to arrive worrying the whole time if he was upset.

No worries at all. He was fine as the para in his class brings him off the bus. I elected to walk him in to his class since she had to wait for other students to arrive. We had brought his reverse walker with him to assure that he can get around the halls with ease.

Everyone of the staff seem to know Cameron from last year. We received so many warm greetings from different teachers and staff as we walked through the hall. Cameron repeating over and over "cook". He hasn't forgotten that lovely kitchen set up he saw at open house.

Once inside the class room, Cameron went right for the doll house. (His daddy is gonna be so proud)..! I told him bye and made my exit with very little interest from him while another little boy held tightly to his mom's neck. Cameron rode the bus home too and in his notebook we found a sweet note from the teacher telling us how well Cameron had done. That he had spent some time cooking and making new friends. His color of the week is red and his letter is L. He is very excited to go again tomorrow and I'm so glad that this is something that he enjoys and that the people teaching him enjoy him just as much.

Gettin in the swing of things

Last night Robert and I were enjoying some quiet time. We were in the den watching Criminal Minds.....one of my new favorite shows, when we heard a weird noise. I called for Alek several times before he opened his door and said "what".  He was in his room and I had assumed that Cameron was with him. He was not. When we went to look for him, we found him in Rylee's room swinging in the travel swing. This swing has been retired to the bedroom because it is not sophisticated enough for my girl. It doesn't go side to side. Anyway, here is what we saw. He's crazy. That's all I can say.

And he did used to fit....look how he's grown!

Open House at School

Today was Cameron's open house for his IPOP class. We are very excited that he will be attending the IPOP program this year. It will consist of 10 children, 5 of which are typically developing and 5 with some sort of special need. Luckily, Cameron's preschool teacher has moved from preschool to the IPOP class, so he will have the same teacher as last year. Her name is Mrs Coaty and Cameron just loves her. Today when I asked if he wanted to go to school, he said yea, see Coaty. The classroom was so fun. His favorite part was the little make believe kitchen. I'm sure his dad would have been so proud to see his little man making pretend spaghetti in the kitchen while all the other little boys played with trucks. It was adorable. I had to literally drag him out of that classroom in order to make in on time to his PT appointment.

So, I think we're ready. Tuesday is coming, and school is starting. We'll see what happens when the yellow bus pulls up. I think Cameron will be fine.....it's nanny that I'm concerned about. :)

Spaghetti in the bathroom

We all know that as mothers, you lose your alone time. This is true no matter what you're trying to do. Shower, sleep or even the unmentionable....using the pot. This morning when I got up I was doing my business Cameron came in to greet me. Morning he said. This was followed by our imaginative play. Cameron's imagination has really blossomed over the last several weeks. He uses blocks as tea cups and has tea parties. He uses mister potato head arms as spoons to eat imaginary yogurt. This morning in the  bathroom I was instructed to make my hands into a plate where he placed imaginary spaghetti. I had to eat the spaghetti and then he gave me more and more.

There is definitely something to be said for imagination.

8 ferty

Cameron never fails to make me laugh. Even when I've had a long night with little sleep or a day full of chores. Last night when I was tucking him in we had our normal conversation.

Me: Goodnight Buddy
Cameron: B (B is binky which we got rid of a week ago)
Me: No Cameron, B is gone. Only babies use binkies.
Cameron: B, one time.
Me: Nope. Are you a baby?
Cameron: Rylee. Big Boy
Me: Ok then. See ya in the morning, I love you.
Cameron: Morning. 8 ferty.

I don't know where this 8 ferty thing came from. It's hilarious though. He looks at his arm like he's reading his watch and tells me he'll see me at 8 ferty. All day I've been asking him what time it is and in Cameron's world it is always 8 ferty.

He sure knows how to brighten my day.

Woo Hoo

I'm super excited today. Rylee slept through the night last night (10 hours straight) and did nearly the same the night before. I was able to get the boys to bed by 9:30 and then Rylee shortly thereafter. I was in bed by 10 and got to sleep until almost 7. This never would have excited me so much before, but when you've been 6 weeks without a full night of sleep, this feels like a much needed vacation.

In other news...! Cameron is doing great. He is walking all over the place. He loves to say "mama watch" and then walk around the living room. He is still unsteady and walks like a drunk, but it is so great to see him up on his feet. This was the milestone we have waited a while for.

So off to the doctor. This time for myself. (My 6-week postpartum checkup)......yee haw.

Just crazy busy

Well today isn't any less busy than other days. Cameron has three appointments today. First OT in the pool, then Speech, and later in the day some PT to complete things. He doesn't usually have 3 appointments in one day but lately this has worked out better than having them spread out all over the week. He will no doubt be exhausted at the end of the day. I know I will. The good news is that we are making more of an effort in the potty department and Cam is doing great. He used the potty 5 times yesterday and 3 of those times were because he asked to go. He is still wetting his diaper in between but I think he is making great progress and we are so proud of him. His abilities never cease to amaze me. He is one smart little dude!

Hot Dog Dance

4 weeks old already

Kids like him?

So yesterday we went to Home Depot to buy a gallon of paint. As usual the paint line is long and I have to wait for help matching paint for our shutters. And of course, I get the nutter to wait on me. In case you don't know this, I am a nut magnet. If there's a nut around, they will find me. The girl seemed nice enough to begin with. While we were waiting for her to match the paint, Cameron did his usual waving, making faces and saying hello to everyone who walked by. Most people as usual responded with a smile and returned the greeting. This nutter behind the paint counter instead responded with the question. "If you don't mind me asking, does he have autism or Downs? I nicely said, "he has Down syndrome". The girl then proceeded to tell me that she has a sister that has Cerebral Palsy and Hydrocephalus so she sees kids like Cameron all the time. Okay, so I believe that a picture is worth a thousand words. Unfortunately, there is no picture of my face after she said that. I didn't respond simply because it quite frankly shocked me a little. What exactly is a kid like that? Ok sure, Cameron has DS. So? How can someone who has a sibling with a disability classify a child that way. I know it was one of those harmless things, I'm sure she didn't mean to insult me but it's kinda like saying the R word. Although it wasn't meant to offend, it does. It's like saying I see black people all the time, or I see gay people all the time. Really not the appropriate thing to say. I felt the need to educate her, but Robert was getting embarrassed and I knew he would walk out of the store and leave me.

After leaving Home Depot, we went to Chick Fila where everyone knows Cameron. They are always so polite and enjoy Cameron's sociable personality . While we are eating, Alek asks me how that lady at Home Depot knew Cameron had DS. I said because of the way he looks. And Alek said he doesn't look different. That touched my heart. Alek sees Cameron as his little brother. Not one of those kids, or a kid like him. That's the way that we see him too as well as everyone who really knows him. In our little world sometimes I think we forget Cameron's diagnosis. To us he is just an adorable little boy and is no different than anyone else. It's just unfortunate that society will always see our kids this way instead of seeing their true colors. Maybe next time I will take the time to educate someone who says something goofy.

What the.......

Apparently as people age, they become crazy. I have seen this in my mother in law. Just take a look at my previous posts to see that she is a real nutter lately. Listen, I appreciate all the things she has done to help our family in the years past, but lately I'm not so appreciative of what she has to offer. Since this new healthcare reform issue has been a hot topic, she has convinced herself that this is the beginning of the end of the world. Geesh. She is very religous and I respect that but good grief, how bout being a little more positive and enjoy life. It seems all she talks about is the rapture, the end of the world and what is going to happen to us sinners who don't attend church on a regular basis. This is where I draw the line. Last week she was visiting and while holding my newborn and very innocent daughter she explains that if Rylee grows up she will look like her mama. But if she doesn't (cause again, the world is ending) she will be going to a place that grandmama doesn't know. In other words, she is saying that a 4 week old baby is going to hell. Why is that? It's because Robert and I don't go to church! That is not because we are not believers. We have spiritual beliefs. Maybe our beliefs are as strong as hers, but we believe in the same god that she does. The difference......we don't spend every day preaching to others, give 10% of our income to church, or spend numerous hours with the many hippocrites I have found at church.

This is ridiculous. Do people who consider themselves "Christians" actually believe that infants and children who are obviously not old enough to claim Christ as their savior, will go to hell? I'm sorry but the God that I believe in is fair and just and would never damn children or even people who had not had the opportunity to learn about Christ to hell. And furthermore, why is my family going to a place that wacky grandma doesn't know simply because we don't follow her church rituals? We are good moral people. We take care of our family. We don't lie, cheat or steal. And I believe we will be judged accordingly.

Good grief lady, give me a break. And get some medication. You're driving everyone nuts.

Incredible Imagination

Cameron has been feeling so silly lately. But his imagination has also blossomed. He uses blocks to have tea parties and a necklace as a whistle so he can be a coach. He is even a swimmer in the goggles he found in the bottom of a closet.