Here we go again.

Back in about May I signed Caden up for a program that offers respite care. I just wanted to be able to go to the freaking grocery store alone.

It took them two months before they even came out for the home visit strike one. The guy comes out tells me the ins and outs tells me they MAY need ONE evaluation. Fast forward to August and the lady meets me in an office for two hours, at the end of the two hours she said "I'm not sure on him he is too social for autism". I get a call several days later her telling me she doesn't think he has autism she thinks he is "mentally retarded" Strike two. I don't care if it is a valid medical dx, I want to know where the hell she came up with this after two hours.

I contacted the school and had them complete an IQ test on Caden, it came back at average, the only issue is Caden sees everything in black and white. There is no middle ground, no small details, which lowers his IQ, but the best guess they have is his IQ is average range.  He made so much progress in OT, they were able to drop him to once a week, and he is actually ABOVE level on grasping. His PT, while still behind he is making huge progress. ST he is at level but there are some issues she would like to work on (truth be told she loves Caden so she is going to find something).

The lady comes out the day after I faxed her all of the test results for Caden  observes him, and calls me several days later saying he wasn't engaging with the other kids, and she wants to do an ADOS (autism screen) on him. You mean ANOTHER autism screen? This makes I believe #8 or maybe #10. But lets go back to her comment "I'm not sure on him he is too social". She said no autism because he is social, and now she is saying he wasn't engaging with the other students.

WTF is it? Does he or doesn't he? Remember we have played this game before I am quite frankly tired of it. Grocery shopping alone is totally not worth it.

Much too long

It's been a LONG time. I think the last time I wrote C was just into his first year of Early Childhood. Here we are at his last year.

He has grown, he has thrived, and he has been released from all his doctors. We had an autism screen last year, it came back that yes he is delayed but they are not sure that the delays are autism. It could be that it is left over preemie issues, or it could be pdd-nos, a very mild form of autism.

He still has therapy, he is in speech twice a week, occupational therapy twice per week, and physical therapy once per week. He still can't write his name, they feel it is because his hand muscles are so weak he tires out before he can finish writing it. I think he is stubborn as hell and refuses. The kid can take apart anything, can't put it back together, tell me he has weak hand muscles.

R, she has really been struggling with anything with words. We thought eyes had them checked there is nothing wrong. I would pour over ADHD websites hoping to catch something that might explain her issues. Her memory flat out sucks, like bad. It takes a normal child something like seeing it 50 times before it commits to long term memory, a child with ADHD might take as many as 80 times. With R it takes about 100 times. Those numbers may be incorrect, it's been awhile since I was told. In other words it takes her seeing it twice as much as a normal child before it commits to long term memory. The more I read the more it talked about the medications in the concerta/ritalin family helped with memory retention. It took two different medications that caused major weight loss, or sedated behavior before I could talk R's doctor into trying Ritalin. She started the Ritalin about six months ago, she has not needed an increase, and here is the big thing she is starting to read. It has finally clicked. Where it used to take her twice as many times as normal children, it is now taking just a few extra times as normal children before it commits to long term memory.

We have since changed doctors, we have enough refills to last us until we can get in with the new doctor. I have heard excellent reviews about this new doctor. He LISTENS he refuses to dx any child on one screening, we wants at least two. Which we already have. He is more up to date on current therapies and medications. I really hope he is what everyone says he is.

J, not much has changed with J, she is my only child that is totally 100% predictable. She spends her time in school, if she isn't in school she is drawing.

She has her own facebook page, but she hasn't been active for awhile. She got so overwhelmed with the drawings, and school that she stopped the drawings. And as if I didn't need to say this © 2008-2013 All materials, content and forms contained on this website are the intellectual property of Designs by Jade G and may not be copied, reproduced, distributed or displayed without Designs by Jade G express written permission. You know got to do the copyright on Jade's picture if I am going to share it.

K.. I don't even want to get into the legal mess he has himself in. I hope at best for probation, but he is probably going to prison. He didn't use his head, and got into a lot of trouble. I really want to kick his ass, like bad. Instead I am fighting off idiots that think it is their place to say what went down. Not their buisness. I can only hope Karma doesn't bite her hard in the ass or maybe I CAN hope karma bites her hard in the ass.

When you have nothing nice to say blog about it.

So I have noticed on several posts today people with the it's my way or the highway mentality. Are you KIDDING ME? Okay so lets get into this shit.

Cloth diapers, (the main thing that sparked this blog) I have no issues with cloth diapers, but they are not for me. I am not going to go post on someones status about how cloth diapers are so gross (not that I think they are, I just hate the extra laundry).  Really what is the point of yelling at someone because they choose to use a different type of diapers then you? Oh heaven forbid I decide I like Huggies better then LUVS are you going to pitch a bitch fit about that one also? What point are you trying to get across besides you're a bitch?

hot topic- Circumcision. While *I* have decided it is better for MY son to be left intact, I also understand the social pressure there is not to make that decision. I am not going to go and tell someone they abused their son over it. All you do is make the other person shut down and stop listening.

Politics (yes I am on a roll with hot topics today) Debating politics is one of the most pointless things you can do. My mind is already set what way I am going to vote. Unless some dirty shit comes out, you're not going to change my mind. Add to that, if you source is a non-partisan source, I am not going to listen to (fox news) bullshit. If you keep badgering me about it, again I will shut down and stop listening. I am glad YOU feel the way YOU feel, so go vote that way. But *I* feel the way *I* feel, and *I* will vote the way *I* feel makes better sense for *ME*. FYI, I am not a one issue voter, I look at the way the person feels about EVERYTHING, there isn't a make or break issue for me.

CIO, co-sleeping, and general parenting. Hey you-yeah you random person who thinks just because CIO worked for your child, and you think that your bed is just your bed! That doesn't mean that works for everyone or even that it will work for your next child. After four kids I have learned one thing, it is just because it worked for one, it is a guarantee it will NOT work for the next.  So next time you jump on your judgmental soap box remember to eat your words when little Johnny CIOs for four hours and in utter desperation you bring him to your bed so you can sleep. I would say I would laugh when that happens, wait I am saying if I am there to see it I WILL be laughing.

And while we are at it, since I am being a major bitch today, formula versus breast. GET THE FUCK OVER IT! We KNOW breast is best for god sakes! But when you have defective tits what are you going to do starve your kid? Yeah I thought not.

Needless to say, I am so sick of people feeling the need to debate every.little.thing. Just because you think your way is heaven sent doesn't mean I do. Get over yourself, you are not GOD!

Updates on the previous post

Starting with Caden again. So I took Caden into the school for the transition meeting. While Caden's case manager is sitting there they are observing Caden. He is acting like a normal 2.75 year old is expected to act. They said they want to test him at the district level to see what they are dealing with. Caden's case manager turns four shades of purple she was so upset. Oh sorry, can you not bully the school into your bullshit dx?

Caden went to the pulmy, I let her read the autism report, she read it over, said you might as well trash this, because it is nothing but a whole bunch of garbage. This isn't the Caden I see. She even refused to note it in his chart. Other pulmy news, he has been released from their clinic. Granted it isn't a full time release, it is a go in twice a year just to keep him current just in case we need them.

His 3 year well child exam went well. He is up to 34 lbs and 38 inches. Not bad for the little dude who started out at 2 lb and 14 inches. I also brought up the autism with his pedi, and the developmental pedi's desire for the blood test. His question to me was this "is the blood test going to chance the services Caden is getting?" Which is a no. He then said, "then why make him suffer with the blood test?" He also said IF and that is a BIG IF Caden is autistic (yeah another doctor who disagrees are we seeing a pattern yet?) he would be on the lowest end of the spectrum you can be on. He said go with it for now, and get the extra services. Which I agree.

Rylee update: ALL the allergy testing came back negative. The allergist thinks it was just a fluke thing, I think it was the detergent. So I will continue with what I got going now, and see if she has another rash show up.

Jade update: The hearing aids seem to have done the trick Jade went from a GPA of about 2.5 to a GPA of 3.5. She has A's in most her classes, with a few B's in her less interesting classes. WTG Jade!

Kennedy update: They have decided that he has bi-polar. BUT they are also thinking we might be dealing with aspergers. The pedi said 100% Kennedy IS on the spectrum. What this means, not much. Both are treated the same way, so even if we are treating for bi-polar, it is the same meds, and same therapy a child with aspergers would get. While we may not have all the answers, we have some.

And that is that in a nut shell.

Long time

Oh my it has been awhile. So here we are, at the end of summer and I haven't updated anything. Since I have major updates on all the kids we will go youngest to oldest.

Caden, he had his adenoids out, you seriously wouldn't have known he had major surgery even 4 hours later. He did have a little trouble waking up, but it was expected they gave him some sort of medication that would make waking up a little easier then it was the first time he had surgery. He is sleeping MUCH better, he is no longer snoring, and he is talking much clearer then he was prior to the surgery (even ST and OT thought so).

As many of you know we have been fighting with OT and ST for almost a year on the whole autism dx. They wanted me to take him into the office for an evaluation (August 24th) and see what the board had to say. I KNEW what they were going to say, they were going to say autism. Forget the fact that the only screening he ever failed was the one given to him when he was 18 months actual (15 months adjusted). His developmental pedi admitted herself they will fail the screening if it is done before they are 18 months adjusted. So 5 screenings and he has passed them. We are not talking the M-chat, we are talking the CARS screening which is more in depth.

So after watching him for about an hour, having some lady who doesn't know him interact with him they came back and said yes he has it. I still disagree. I think there is another issue at hand here they are not seeing. Yes there are markers, I admit there are markers, but some of the things they had listed as markers are issues he had months ago, not current ones. They say that is because he is in therapy. *sigh* whatever. I may not agree with them, BUT Caden is now approved for one of the best preschool programs you can ever hope to have your child in. I refuse to let this label interfere with him leading a normal life, I refuse to let him and the school use it as a crutch.

As far as the homeopathic drugs, we haven't had to dose Caden since May. I am seeing some signs that he is ready for another dose, he is starting to slow down on his learning, but it isn't the brick wall we were seeing before. So that is Caden in a nut shell. Oh and before I forget, they want him to have a blood test to rule out genetic conditions. I am going to go ahead with it, but I think it is going to come back normal.

Rylee, miss Rylee is now in kindergarten. Which has me stressed. NV adopted the new core standards http://www.corestandards.org/ which you can read about there. I think they are out of line, I think they are expecting way too much out of these kids. I had Rylee in preschool to you know give her a headstart, instead she learned NOTHING that the core standards expects out of her. She can sing pretty songs, she can write her name, she knows her numbers, colors, and shapes but knows nothing with it comes to ABCs and phonics. What little she does know is because I have been pushing it really hard this summer. She learned more from me this summer then she did in the two years she was in preschool. Over the summer she kept having these awful rashes come and go, we are talking she would be covered head to toe. I took her to the doctor who is certain it is allergies. So the end of this month we have a trip into the allergist (same office as Caden's pulmy) to see what is causing this. I am NOT looking forward to seeing my child allergy tested. The only thing that has me less stressed about it, Caden's pulmy told me which of the two allergy doctors to request, and which one is the quickest and more gentle. In the end, I just hope I am not putting my child through something that shows nothing.

Jade news, I am not sure that I mentioned but back in about April Kennedy made a smart remark about Jade not being able to hear. After further questioning I found that he wasn't kidding it was true. I made an appointment with the pedi (who I love) he did the easy hearing test on her, and found that she failed it 100% failed. So he sent us to an audiologist. We went into the audiologist to find that Jade had 75% + hearing loss in her right ear. Which lead us to an ENT (who I also love) the ENT wanted to rule out genetics (which we didn't fully rule out but any major things are a no) we had to do a CT scan, and a brain stem scan which both came back normal. We also had to go to a hearing aid place. So my 14 year old daughter now has to wear a hearing aid. The school was less then helpful (forget the fact they failed to notify me about two hearing tests that Jade had failed) finally I went and parked my butt in the principals office until they paid attention to me. Now they are willing to take a closer look at Jade, but for now they do not want to put her on any type of educational plan until we know how the hearing aids are going to work. Which we pick them up tomorrow.

Then we get to Ken. We have finally got him to agree to therapy, and *fingers crossed* medications. The meds we will know more next week. But after talking more about autism, I am wondering if maybe that is Ken's issues. They were telling me all the signs in a teenager, and every.single.one fit Ken. This is something I am going to have to explore more.

And that is that, that is my summer in a nut shell, lots of running to doctors, and not rest at all.

Dear pprom (prom)

I hate you! I hate everything about you!

You came into my life and destroyed everything thing I knew. You left me wondering what next. You left me with never ending questions.

You came into my friends life leaving her with heartache and pain. You suck pprom (prom)!

How many lives have you destroyed? How much heartache have you caused? How many questions have you left unanswered? Pprom you need to take a hike and never come back.

Me-

doctors appointments..

Caden had his 3 month follow up with his pulmy.. We got talking about the homeopathic stuff, and she asked if we thought there was a difference. I replied yes, in the last 6 months he has went from barely speaking to talking in 2+ word sentences, he is mimicking, he doesn't seem to be hitting the brick wall anymore.

Then of course we got talking about his asthma, she asked when the last time we gave him a breathing treatment, if we were seeing any issues with his breathing etc. I said the last time was in April, he hasn't wheezed, coughed, or even been sick.

She knows we also give Rylee the homeopathic (the first time was because she wanted to try it also). Rylee also has asthma, and she also hasn't had ANY breathing issues.

K is sure that the homeopathic "drugs" have or are healing their asthma.

She also mentioned that she would like me to speak at one of her conventions. Not sure I am willing.. I am NOT a public speaker! I did say I could do a letter, and she was okay with that.

Other news, Caden has to have his adenoids removed. No big shocker there, we knew it was coming up. I am really not worried about it, the healing time for them is 1 day. If it helps him sleep better I am all for it :)

Caden is now up to 29.7 lbs (he finally gained)! And 36 inches tall. :) Not my little dude anymore.

I suck!

Yes I know I suck, and I am so sorry.

So, since this is about Caden, here it is. Caden had another dose of the homeopathic stuff the first part of the month. We didn't see the strong aggravation that we saw last time, but his sleep was very disturbed.

He hasn't hit ONE mental block since starting them.

He went from speaking one word with us unable to understand most of what he said to speaking in 2-4 word sentences, mimicking new words, and we understand about 60% of what he says.

While he still has a long way to go, he is slowly getting there. I recently found a link that talks about preemies and their delays. It said that 50%+ of 25-28 weekers will suffer the same delays that we see in Caden. Take that stupid case manager who tells me that this isn't normal.

In other news, we are down to the final months of speech/occupational therapy. I signed the transition papers the first of the month. His first day of preschool will be the first Monday after his birthday.

This blog

Will be getting a face lift in the next few weeks. I want it to go back to what I started it for, the life of a preemie.

Some posts will be removed, new ones will be added. My more dramatic posts will not be put here, they will be on my private blog.

While I know I may lose readers, I am okay with that.

So stay tuned, or be aware that I will clog up your dash board as I find and add old posts that has to do with the very first moment that my life as a preemie mom started.

The aggravation

1.5 weeks after Caden's last dose we are seeing the aggravation coming out. The kid has done NOTHING but scream all morning.

And I want to cry!

I KNOW this is for the best, I KNOW it will help him past his mental block but oh my!

Caden

When I took Caden to his last RSV clinic his doctor asked me to keep notes on his progress. I never thought I could dust off the ol blog and keep my notes here until someone told me my blog is lame. So, there you have it. This blog will be more focused on Caden's progress and less about well, everything else.

We started Caden on the homeopathic drugs on the 24th of Jan. On the 14th of Feb there was a comment made about his progress.

On about the 24th of Feb I noticed that Caden was hitting another mental block. We gave him the second dose of the baryta carbonica. We haven't seen his aggressive state come out yet from that dose, BUT about a week after giving Caden a dose we notice he comes down with a cold. That may be his reaction to the medication.

Now what we are seeing. He continues to push forward not hitting his mental block. Before he would have 2-3 weeks of steady progress, and then a 1-2 month mental block. Now it seems that the mental blocks are very short lived, and his steady progress is lasting longer.

Photo Sharing - Video Sharing - Photo Printing

A year in pictures

This is before Caden could walk, proving that he could stand. :) 2-10
Not sure what they were looking at. 3-10
Caden's first real Easter, he was very excited to open the eggs to find Candy. 4-10
The first birthday party that Caden ever attended, this is also the first time we allowed him contact with other kids. 4-10
Caden's first surgery. 5-10
OUCH! Thank God this burn healed very nice. 5-10
Kennedy did it! He promoted to high school! 6-10
Rylee was very proud of her tattoo! 6-10
The start of Caden's vertical exploration. It hasn't ended! 7-10
First day of school! 8-10
Park time! 9-10
Halloween! I am sure next year Caden will be more into it! 10-10
The kids Christmas pictures! 11-10
A second birthday, which is a HUGE milestone, Caden's age is no longer adjusted!! 11-19-10
A very typical response from Ken when it comes to photos. Hide! 12-10
While you may not be able to see it in this photo, Jade SMILED! And she was having fun with the little kids! 12-24-10.
Rylee was very excited for her new camera! 12-25-10
And for the last photo of the year, Caden enjoying his candy apple, the thing is almost as big as him! 12-31-10.

Happy New years!

2 years

Two years ago today my journey of being a mom to a preemie would start. Two years ago today I was 24 weeks 2 days pregnant and my water would break. The person I was then gushing out of me like the water around my son.

I used to put up with a lot. Little things would not bother me, and now I find I get angry! Angry over the hand we were dealt. Yes things turned out okay, but I still look at my perfect son and think how things would be so different had my water not broke.

Have I changed for the better? I can't answer that.

I used to be so outgoing and everything that was handed to me I would deal with. Now I and reserved, and hold on to everything. I am an emotional hoarder!

It's been a long hard journey, and maybe this has been a good change for me. But I do not like the person I have become, I do not like how angry I am.

But in this journey I have found some of my best friends. I have seen who is there for me in the good times and the bad. I have have grown. I guess that is all you can ask for.

20 months...

I would have liked to do 20 months in photos, but that is just too many!! It has been almost 20 months since C man came into this world at 2 lbs 7 oz. He is now 24 lbs and going strong. What a blessing he has been in my life. So.. Here is just some random pics!




11-23-08
12-20-08

1-21-09

2-14-09

3-20-09

4-20-09

5-25-09

6-15-09

7-08-09
5-24-10

It still amazes me to look at these photos and see how much little man has grown!

Chickens and Mice

I know I have spoke before about my thing with mice. If I think there is a mouse in whatever I will not go in said place.

Part of this is from when I grew up. We lived next to a corn field and a cow field like this..

Growing up next to said corn field every harvest we had mice-lots of mice. You would open a drawer and find nests of mice. You would do laundry and find dead mice in the clean clothes. It was awful!

So... I grow up, and left this house and the mice behind me. Or so I thought. After my divorce I moved in with my mom (actually I moved in with her so I could get divorced) I have my horse, and they have their chickens, geese, and ducks. We also had raccoons (not by choice). To keep the raccoons from eating the birds, my step-dad built a chicken coop. Well guess what came with the coop? Mice and rats. Needless to say I never messed with the chickens. My step-dad would go out every night to feed the birds and to lock them up. Summer time he would flood the mouse holes. And every night the chickens would be waiting for him to do it. When he flooded the holes we had swarms of mice everywhere (never saw a rat but was told they were there). The chickens would hunt the mice. It was a cool sight to see the chickens kill the mice, but it was yucky enough I didn't get closer then I had to.

LOL so there is my chicken story!

Tubes..

As most of you know C had his tubes done today. While I tried to put on a brave face for everyone saying I was not nervous, I lied. I slept maybe and this is a huge stretch 2 hours last night. I tossed, I turned and I freaked myself out. Even with a sleeping pill my mind would not shut off.

So we get up at 4 am, C man was up and ready to go. You would think the kid was also just as nervous (or excited?). We get to the surgery center just before 6 and hung out in the halls until they opened. We had the entire waiting room to ourselves until 6:30.

At 7 am they called us back, did all C's stats (which were not many) they tried to get a pulse ox, which failed. She asked if C sucked his thumb, oh no he don't. As soon as she let go of his hand he had his finger in his mouth pulling the probe off. The thermometer was sitting on the bed, when the phone rang he picked the thermometer up and said hello. She gave him some syringes (no needles) he had those torn apart and was bored with them within 10 minutes. So we let him wander (no one else was back there). He went and stood behind the counters trying to answer phones. And in general just being cute. They gave him a little ghost in a cup he had the lid off within minutes.

By this time it was time to go back. I picked him up gave him kisses handed him to the nurse who set him down and he walked back to the OR like he owned the place. I heard a small cry from him as we were headed to the waiting room. I sat down sent one text and read 2 pages in my book and we could hear him screaming his head off. We figured they just started, nope, he was DONE. Not even 15 minutes later.

We got back to recovery and boy was he pissed. He screamed for the next 15-20 minutes, like holding his breath screaming pissed. As he started to wake up he would not cry as hard or as long. The nurse came in took his stats and told us we could go. C has slept most the day today. I really hope it doesn't mean he isn't up all night..

In all it was not as horrible as my mind had made it. It was quick and easy. Now to wait on the results and see if this is what he needed.

Adjusted age

I forgot to mention when I was on my mini freak out about C about adjusted ages.

Six more months and they stop adjusting Cs age. Six more months and they feel that he is caught up. Six more months and my little guy is not a preemie anymore.

Granted I will have to mark that he was a preemie for who knows how long (I just filled out some papers on K (14) and it asked if he was a preemie. It is part of Cs medical history, but six more months! It has been a LONG 18 months, I am ready.

Other news... C is now pointing. I noticed it yesterday. I had some cookies in the oven.. I was pointing at them showing them to R, C peeked in saw the cookies looked at me and pointed at them. Later last night he wanted the phone, and pointed at it. One of his fails on the Autism screen, and he is now doing it. YAY!

More on the autism

The more I have watched C the more I think it is wrong.

I know he has a delay, they know he has a delay. Almost every one of his delays has to do with speech.

C had an appointment with his pulmy (just a standard check up nothing serious). We talked about the screening. She looked at me like I was insane. She said that while she is not an expert she doesn't think he has autism. He was able to hold eye contact with her, he interacted with her.

She then went on to tell me about a friend who had a preemie. She didn't go into details, but told me that it took until he was THREE before he said his first word. Once he said his first word you could not shut the kid up. He had his full vocab, but refused to use it.

We got talking about his cold he had two or three weeks ago. She asked how many times we had to give breathing treatments. She then looked back in his chart saw that he has had two episodes of wheezing. It only takes three for them to say asthma. She did mention that she is sure it is something we are going to see come out at a later date. Okay I can deal with that! I know we are going to see something come up. I know C is not in the clear. I know most major things (autism pending) he has cleared.

His next appointment, he will be meeting with the BIG boss. The one that is like a pulmy god in this area. Only the sickest of the sick see her. So you may be asking why is he seeing this doctor. He has to now see every doctor in the practice at least once. That way if we have an emergency (not that we are thinking we will) we will have at least met with all the doctors.

And here I thought this might be the last time he went to this clinic. I think he will be seeing them for years still. Not that it is a bad thing, this is the clinic that has found everything.

My head is spinning..

Speech therapy went well. She watched him, saw that he does not mimic. Saw that he has some skills, but they are really behind.

Pretty much she said the best thing for him is to repeat, repeat, repeat. Even if he isn't showing signs that he is enjoying it keep it up. For instance, I was poking him in the face with his foot (it is part of keeping his hips flexible he has always been a stiff baby) I kept saying get your foot. C wasn't showing a lot of signs that he was having fun, but he was showing enough to keep it up. She said that is exactly what we need to do with him. Okay, I already do!

A lot of singing, reading, pointing etc.. All of them help.

Then we got to the Autism screen. They test all children at 18 month since there is a rise in Autism. C tested a high probability of having Autism. S asked me why I didn't seem shocked. I mentioned that I had already thought it several months ago. I didn't really think much about it, like I told them I knew something wasn't right, but I wasn't sure WHAT.

So the steps will be we watch him for the next several months. See if anymore signs emerge. L the ST is in the Autism team. She said there are some things that are saying no, such as C climbed in her lap and let her cuddle him, he didn't freak out when S and L walked in.. So we are thinking it is a developmental delay (part of the delay he has had his whole life). But my head is still spinning. The what if's are running in my head. I have been on the verge of tears since they left. Seriously Autism?

Then sippy cups. They saw that C was using a soft nipple sippy. They asked how he was doing off the bottle, I said he didn't care. He would take his juice and water in a hard spout but his milk he wanted in a soft spout. S then said, we don't care if it is soft or hard, as long as he is off. They saw a 3 year old that was still on the bottle. If I would have known that, C would have been off the bottle months ago. He LOVES the NUK sippy!

So yeah that is that..