Big news all around

First, today is the 3 year anniversary of Hurricane Katrina. 3 years ago my parents house was full of family from NOLA, and everyone was watching on pins and needles. So now we are all on pins and needles watching Gustav. Once it hits the gulf of mexico it could go anywhere. I was on intent on watching Gustav but apprently Hannah is turning towards the gulf too with another storm at her heels. WTH. I have a friend who works in this field and if she tells me to leave I am leaving. She said once it hits the gulf she will call me with what she knows.

What a pick McCain made. I was pleasantly surprised. I am not a very political person. So when Jen told me today how she was “giddy” with the prospect of Sarah Palin (before it was announced), I had no idea who she was talking about. What I have heard so far I really like. Mainly, the pro-life stance she takes. She also seems like someone you can relate too. She seems like a pretty tough lady.

Though I am not an Obama supporter, it is neat to have him be the Dem nominee. In the beginning he intrigued me. I was not jazzed about any Rep candidate and can’t stand Hillary. So, I was looking at Obama. He was talking about change, and he seemed like a decent guy. But the more I learned, I knew I could not support him.  My conservative beliefs won out. That being said, it was something watching the audience moved to tears for their candidate. (I hope the Rep party can get behind McCain now with that enthusiasm)

This country has come a long way and for that I am proud. (I know there are still race issues that face all sorts of people still) What a historic election.

Thanks for all of the adivise

Thanks to everyone who commented or sent emails. Y’all have given a lot of good advise.

He is taking 2 steps forward and 1 step backwards. So, I guess I can’t complain about that too much. But I must say now that he is showing me that this lack of potty training is behavior, my patience is running thin. Unless he is leaving the house, I am just keeping him naked. Hubby looked at me tonight like I was nuts when I covered J’s chair at the dinner table w/ a crib mattress pad to keep it dry b/c yes, J came to the dinner table naked. I am not giving him the opportunity to have an accident. If you are wondering, he treats underwear like a pull-up. So please do not judge. I will do what I have to do to get this boy potty trained!

J met his second teacher today. (He will be attending a typical PreK 2 days/week in the morning and still PPCD in the afternoon. He beings this PreK program next tuesday at St Elizabeth Ann Seton.) I met the teacher last night at Parent’s Orientation, and she is super excited to be working with J. She told me they will have an aide in there for part of the day, b/c she really wants to work with J. She was so eager to be able to help J. I did not want to tell her he was just there for socialization. I was really cute today b/c J met another little boy in the class. When we were leaving, I told J to go and tell him goodbye. He walks over to him and gives him a bear hug. That other mom looks and me and said her little boy was a hugger too. Good thing b/c J will give hugs whether the other person wants one or not.

I have sucombed to collective peer pressure

I now have a facebook page.

I got a myspace page a few months ago and really did not find a whole lot of people I know out there.

Well, I spoke to a friend (the one who told the virtues of myspace – wow she probably does not know the power she has over me ), and she told me she found a friend of ours from college (we were also HS friends) who I had not spoken to since our HS 10 yr class reunion in 2000. (Nicole, if you read this it was great reconnecting with you.) So, I made a profile today. I knew a lot of people out there in cyberville. I really doubted many people “of my generation” would be out there. I was pleasantly surprised. I even found out my BF from college is pregnant. She lives in Bermuda, and we don’t get to talk all that often. She is supposed to call me tomorrow night to give me all of the details. I can’t wait to hear from her.

Today was the first day of school

How sad is it when your 4 y/o practically jumps from the car to Mrs. Jones (his teacher). Now mind you, he has had this teacher for 2 years but still. He has been looking forward to going back to school for weeks. Every time we pass his school he asks for Mrs. Jones. It is reassuring how much he likes her. It reassures me that she is treating him well. It is a scary thing with a child who does not answer questions to know that no one is mistreating them. Actually, we had a first today. Normally, J just answers questions with yes or no and that is it. When I picked him up today, I asked him if he had a good day? J’s response was, “Yeah, I did a puzzle.” THIS WAS A FIRST OF HIM ANSWERING A QUESTION APPROPRIATELY! I did a little cheer with him and praised him about answering so well. So kuddos to the J-man (Misty, that’s for y’all).

Hubby (HS teacher) started school today, too. He said it was total chaos. One girl came to his class and said her schedule had her at lunch all day long. J has been going with hubby over the weekend to get his classroom ready. J calls his school a castle. For those who do not live in Texas, the high schools look like a community college campus. They are VERY large. Last year hubby’s school had 4,000 students. Don’t know how many they will have this year. that just gives you an idea. so, Daddy works in a castle. He starts teaching at the community college tomorrow. summer is officially over.

Potty Training

I know I have lamented about this topic before. I have asked the preemie group their advise on the matter. NOTHING is working. Over the past several months, we have been racking our brains to figure out what to do to get J potty training. We have gone all over the place – control, not having the sensation to “go,” sensory by not being able to have his feet on the ground, etc. Let me explain what it is like trying to get him on the toilet. I ask him to go sit on the potty – His response is “no” – I ask him again to go and sit on the potty – “uh, no” – I physically put him on the potty – he squirms and screams to not get on it – I get him on the potty and he just sits there doing NOTHING.

He is now most days waking up with a dry diaper. Friday I was determined that he would go on the potty. He and I had a show down. The above scene played out. We had an hour and a half until meet the teacher. I figured we had plenty of time. Boy was I wrong. He held it for an hour. I knew he would not “go” unless he had a diaper on. I refused to put one on him no matter how much he asked. He did not sit on the potty the whole time, but he was doing the cross the legs and jump around to keep from going. HE WOULD NOT GO ON THE TOILET. 8am hit and meet the teacher was starting and he has not had breakfast or gotten dressed. He won. I put the pull up on, and he peed so much he was puddling in the diaper. I got to run him to the bathroom and give him another bath and mop the floors where he had left a trail. Needless to say, I was none too happy. This is more than likely TMI, but I need help. I need the mommies in blogland to let me know how they have won this war. I know J is out of the ordinary but any advice is wanted. I am also throwing this out there for Heather too. I spoke with her last week about this b/c her little girl has been “stubborn” to potty train too. Heather, if I get any good advice I will pass it along.

20/20 tonight

I just saw a clip on the ABC World News about 20/20 tonight. “Babyland” is the title of tonight’s show. It is on the problem of infant mortality rate/prematurity in the US. I already did not like the intro. They said if more women got prenatal care the rate of premature births would dramatically drop; then they zoom in on a micro-preemie. The above statement is correct but it a gross exaggeration, IMO. All the months J was on the NICU and the 2 years I worked there most babies did receive prenatal care. A lot of reports take this angle and it is soooooooo often not the case!

After, I watch it tonight I will update this post w/ my opinion on what I saw.

** update – Ok, I watched the show. It was totally focused on Memphis, TN and the rate of infant mortality there. Apparently, it is the highest in the country. They focused on the inner-city and the mom’s lack of prenatal care. Everything they said was true, it is important that women get prenatal care. The problem I have of most of these type shows is that they make it seem if all women get prenatal care then premature births will magically disappear. That is not an entirely true statement. Guess what? I did everything my doctor told me to do during my pregnancy, but J still came 4 months early. Another thing that really was tacky thing they did, IMO, was they put a price tag on the babies. The reporter was walking through the NICU w/ the neo and she looking at the different babies and asking how much each of them was going to cost. This one is going to be $35k, that one going to be $500k, etc. I know she was trying to make the point that prenatal care is much cheaper than these amounts but really was that necessary?

We are approved

Just got an email from our social worker, and she was able to present us today.  So, we were approved.  YEAH.  Contract should be coming shortly.

What they don’t tell you about prematurity

Stacy at The Preemie Experiment posted this yesterday (I hope she does not mind me copying the post ), and it is worth a read.

Invisible Issues Related to Prematurity

Wheelchairs, glasses, feeding tubes, leg braces… all are outward signs of prematurity . If you need services at school, you’ll get them. If you go to the doctor, they listen to what you have to say. Neighbors understand why you are tired. Family offers to help.

Advances in medicine and interventions have lowered the number of children who need those devices. For this I am thankful. My daughter does not (currently) need any of the above (although she did wear leg braces for a few years).

But, there is another side to prematurity… Invisible issues. They are clear as day to us parents and the preemies that experience them but invisible to the outside world and largely ignored by the medical community.

anxiety disorders
sensory integration issues
psychiatric issues
behavior issues
fine motor delays
fatigue
feeding issues
weight and growth issues
reflux issues
head aches
autism spectrum disorders
coordination issues
sleep issues
severe constipation

Over the years I have heard many parents say that they were blamed for the above issues.

I am also one of those parents who was blamed. For a brief moment I believed it. (I must not be feeding her enough, I must be babying her, I am not strict enough, etc) But, as I started talking to other parents I realized that other preemies were suffering with the same issues.

If you are thinking, “these issues are not that bad” then you have never lived with a very young child who stabbed herself because her “thoughts” told her to. You have never lived with a child who has such severe constipation that, despite adult doses of Miralax, can still tear herself bloody when she has a bowel movement. You have never lived with a child who will drop to the floor and scream when hearing a voice on the loudspeaker. You have never lived with a child who will cry because she is so tired that she cannot run with the other children.

These invisible issues are what makes me continue to fight to get the word out. Why should any parent feel responsible, like I did, when the above issues are actually commonly reported by parents of preemies? Why should I stay quiet and let the doctors feel that preemies are fine after age 2? How will conditions improve? How do we expect the doctors to know?

I’ve been told that my posts sound angry. Since true emotion can be misunderstood, I want to be very clear. I am not angry. I was the one who chose to have the doctors save my daughter. As it stands right now, I cannot look at my daughter and honestly say that I would choose differently.

Frustration is the emotion that I feel. Frustration that misinformation is still the norm when it comes to preemies. I feel an incredible sense of duty to be a voice for future preemies and their parents. I am thankful that I am not alone in this passion.

I have really taken a lot away from Stacy’s blog. It is alway a welcome resource to read or hear from parent’s who have BTDT. Parent’s of extremely premature little ones still have a lot of uncharted territory. J was born on the edge of viability. If I had delivered him even the year earlier his chance of survival would have been very rare. These invisible issues I feel sometimes can be harder. W/ J, we seem to cycle. His behavior seems to get REALLY BAD before he hits a maturity growth spirt. Right now we are enjoying a lull in bad behavior. He is able to tell us his wants and needs better. I hope it continues.

One aspect that I have been very lucky in is that we have NEVER had doctors question us or our parenting. We have had and continue to have very supportive medical community. Our pedi tells J every visit that J is allowing me to earn a very special place in heaven daily. His office is very stimulating for J and J wants to experience it all and not to take time to have the doctor’s visit.

I guess I just hope you take away from this post is that don’t dismiss what a parent says they are dealing with just because their preemie looks “normal.”

I want to also have everyone check out Lauren at Cheers Y’all. She is in route to VN right now to pick up Emmett.

Today is also my little brother’s birthday. Happy Birthday A.

Tomorrow morning the social worker is presenting our home study to the agency.

Heard from our social worker

Our social worker email me this morning and will be “presenting” us on Tuesday morning.   Will keep ya’ll updated.

Going for some yummy sushi tonight with our supper club then to House of Pie for what else but pie. 

Have a great weekend.

I got something in the mail from the agency today

It was the NEWSLETTER. Yes, when I saw the envelope from them I was thinking it was the contract. But no, just the newsletter. It did say there were 3 placements last month. That is encouraging.

Lauren (from our VN agency) and hubby leave Monday for VN to go and pick up Emmett. I am so happy for them and can’t wait to see pics.