Okay, just a quick little thingy here....It seems like people aren't really posting much here or on the NBBC. How would everyone feel about a board on proboards? I know I asked before, but the admins at mymommytime.com created a CP board at my request over there, and the format is really simple. Anyone want to join me over there?

Update on me & mine

Hi ladies! I feel like I haven't been able to talk with you all in forever. So many things have been going on, and at times feel like it's all going to fall....but only the strong survive, right? Well, here come the update...

I'm currently 8 months pregnant with my 3rd baby, and will be going by c/s by December 1st. I would really like to wait til the 8th, (of which I'm due) but my hubby is scared of any possibly complications. But to be quite honest, I'm done being pregnant for at least a couple of years; if not completely. I've been pregnant constantly for roughly the past 4 years of my life! lol...No name has been concreted yet, but I'm liking the name Mateo Gael. (middle name pronounced Ga-e-l) Please feel free to send any name suggestions my way!

Andres and Diego are doing great. Andres started pre-school last August, and just had his first parent-teacher conference last week. The teacher enjoys having him in her class, and says that Andres strives to be like the rest of his classmates. He knows who to be around when they do certain activities so that he can physically be supported. He has problems with the stairs when he has his serial casts on, but still tries. He's social but would rather play by himself; I find myself being worried about that aspect because usually he's such a social butterfly. He's making strides in speech therapy, but is still having problems with pronunciation. One bite of the apple at a time, otherwise I know I'll choke on it. Diego will be turning 2 on the 6th of next month, and I still have a party to plan! He is such a character, and is SO strong-willed. His favorite word right now is NO! Such the tape recorder this one is, (like his older brother) so I'm having to watch myself that much more often.

Please let me know if you're on hotmail, so that I can add you to my messenger. I feel so disconnected from all of you!! I hope all is well and hope to catch up with you ladies soon! Much love to you all!

-Angelica

Does anyone ever hear from Alisha?

Just wondering how her and her Wiggles & Gumballs are doing?

They never made it over here did they?

Nosies!

Haven't had a round of these since we were on Old BBC- Maybe a dose of the nosey thread will get us moving! I'll post a few and answer in the comment section~ I'm going back to basic questions, I know we've probably answered these before.

1) Whats your favorite color?
2) Your favorite food?
3) Favorite scent for your home?
4) Do you text message? On average, how many per day?

Update on us

Okay, just a quick update on here. I'll update more in-depth on my blog.

Bri started preschool on Sept. 9. I was a nervous wreck about it, especially when I learned that she was the only girl, she's the only one who can't walk, has special meds, feeding tube, etc. It wasn't reassuring to find out that the teacher had reservations about her being in the class, because she had no experience with someone with the type of disabilities Bri has. She has worked primarily with kids with Autism or SPD, which are the primary diagnoses of the seven boys in Bri's class, as well as some speech delays.

But, let me tell you, Bri loves going to school. She goes on Tuesdays and Thursdays right now, and every day, she brings home a piece of preschool artwork, which I am amassing in a collection. I need to get them all laminated and put into a book or something. Maybe scrapbook one or two of them. Anyway, back on track....Bri loves circle time, is the belle of the classroom. Everyone loves her, and, even though she has an assigned one-on-one assistant, the teacher makes the assistant share Brianna time with everyone. She has charmed the teacher, all three assistants, the nurse, and all of the therapists. Not to mention the boys in the class....She already has two little boyfriends, from the very first day. The first day, we were waiting outside for the teacher to open the door, and one of the little boys, Daxton, came up, and was very interested in Bri and her chair. He looked it up and down, was touching it, trying to touch Brianna. I found out when I went to pick her up, that another boy, Allan, was very helpful during circle time, showing her each object, explaining to her what everything was. That following Thursday, I dropped Bri off, and stayed there for a few minutes, just to show the assistant how Bri's AFOs and her TLSO brace work. While Bri was lying on the floor, first Allan, then Daxton came up, and started stroking Bri's head and cheek, telling her, "Hi, Brianna, I'm Daxton! It's Daxton!" or "It's Allan! Hi Brianna! Hi Brianna!" It was like a little contest. Since then, Daxton, especially, has shown an attachment to her, trying to get her out of her chair as soon as she gets there, so she can be on the floor where he can say hi and play. He starts trying to unbuckle her buckles and, if you're not watching, will try to lift her out of her chair himself. It's so sweet.

Anyway, that's Bri's school update. As for me, nothing much has changed, except, instead of having Mondays and Tuesdays off, I now have Sundays and Mondays off. So, while it means less time to run errands during the week, it also means I have one genuine day off, during which I cannot run most errands, so I will be forced to rest and relax most of the time. Other than that....eh, same old, same old. Still single, though, at this time, it is more of a good thing than a bad thing, as I was dealing with a psycho who wouldn't stop calling for a while (he finally took the hint...I'll blog about it on my other blog soon.), and am burned out on needy, jealous, possessive, overbearing, insecure, psychotic men for a while. And, with my luck, that's how they've all been lately. What's new with everyone else?

Updates

Ok, girls.

It's definitely time for some updates! Some of you are about to pop out babies, ALL of your babies are getting older, some of you are going to school, some are changing jobs, some have moved out of state or country...I'd love to hear about it all!

I really miss the old BBC board, where we "talked" often. I noticed that the old BBC is still up-and-running, so if y'all were ever thinking of meandering back over there, don't leave me out!

If you don't know how to post on the blog, then give us your update in the comment section for this post.

In fact, I'll start the updates with my own in the comment section.

Love y'all!

I've Got It On Video!

Oh, girls. I've been so very horrible with posting and responding to your posts. I HAVE been reading, and cheering with you, and crying with you... I'm actually really missing our BBC board. The format just seemed so much easier. And it's REALLY HARD for me to get onto blogs at work, which is where I spied on y'all most often.

At any rate, I just wanted to share this video that my DH took at Ellie's therapy session yesterday. She's walking so much better these days! It's like the light bulb FINALLY went off! She still needs some help with the criss-crossing of her legs (which is what the therapist is doing---putting her hand in between Ellie's legs to keep them from crossing over one another), and some hip support, but the actual rhythm of steps is really coming along. YAY!

Love y'all!
Chrystie

Jason starts 4th grade tomorrow!!!!!

Jason is starting his first day of 4th grade tomorrow. He goes to a year round school, so the schedule is different. I think he is a little hesitant this time around, because he is starting to realize that he is getting older and has so many more responsibilities now. The class he has been put in, has a teacher who is good with children with disabilities, so that is a big plus. Jason needs to have teachers who are patient with him. Sometimes he has a hard time understanding things and getting answers out as quick as the other kids. But he is smart and I know he will be ok. He has also formed a great group of friends he hangs out with, raised well from good homes. They tend to protect him from the bully's in school. :o)
We are also almost done with his IEP, we just need to meet with the psychologist now, who will be determining what kind of help he will be receiving for his comprehension issues. Also his new teacher let me know that about two weeks into school, once she has had a chance to get to know Jason, that she would like to have a meeting with us to get an idea of what she needs to do to get him on track, what she can expect and make sure he has the best possible learning experience. I was happy to hear she took the initiative to offer that.
So we are onto hopefully a positive year for Jason. I am praying there aren't as many bumps in the road as last year. But heh, if we hit some bumps, so be it. We will just face things head on as we have in the past and think as positive as we can. After all that is the only thing we can do right? Anyway, just wanted to give you all an update.

Hi Everyone!!

It has been quite a while since I have last updated, but I do follow the board religously and love to see what your "little one's" are accomplishing. As for "Benny", he has been doing well as of late(knock on wood). 2 months ago, he did have another major seizure which was triggered by a fever. He had to be intibated, and was at our local Children's Hospital for two days. He did bounce back quickly, and our Neurologist has since weaned him off Tegretol and onto Keppra(better for fever-induced Epilepsy).

Since we got home from the hospital, he has started to crawl! He was crawling on his belly, but he has since started the "real thing." He still won't pull up, but we are really working on it with the Therapists. He is all over the place now, and starting to act like a real toddler! LOL He will be 2-years old in December, and while I would love to see him walk, I am just happy to see him crawl! Did any of your little ones struggle with pulling up? He has done it once in his "pack and play", but hasnt done it since. It almost seems like he is so excited to crawl, that he has lost interest in pulling up!

The PT is thinking about Orthodics for him, but she wants to try a few other things first. I kind of wish she would be a little bit more proactive.

I look forward to continuing to post here, and wish all of you the very best! Stay strong mommas!

Take Care,

Carrie

We need prayers,too, please

I wanted to say good luck to Logen on his first day of kindergarten. Jess, I remember that old pic that used to be your avatar on the OBBC a long time ago with Logen as a little guy in the tube in the pool. WOW! I can't believe he's 5 already!!

We also could use some prayers for Sammy. He is starting in the integrated preschool tomorrow for a half day. Brian will be bringing him since I have to be at school, too, and I wouldn't be able to stay as long as I would like until I felt comfortable leaving him! So Brian can stay for a while and make sure he's cool with it. He's visited twice now, and he's ok with being left with others, but I am freaking out because he is SO helpless, has ZERO mobility and has ZERO speech with people who have no clue about his quirks and how he does communicate in his own way. I keep telling myself that I am leaving God to take care of him while he's there and I prayed on Sunday at church that his teachers have the strength and patience needed to take care of him and help him learn. I feel a little better because his lead teacher has a 27 year-old son with very severe CP. I guess who better to take him than someone who's lived it themselves?? ANd he will be getting more therapy there, so I'm happy about that....

Luke is LOVING middle school. See, just goes to show that all of my freaking out about him getting lost and getting picked on and being overwhelmed was for nothing! He is doing great! :)

And I am loving my new 4th grade class! My principal moved my sister from 1st grade last year to 4th and my other sister from 1st grade to 4th this year and me from 5th to 4th this year and then didn't hire a 4th teacher for the grade, so we all got stuck with more kids. UGH! So we have the ED classroom for 4th grade in the area with us, which has actually been great for them and a learning experience for us. I thought I would hate the grade, but the kids are much sweeter and innocent, so i am loving it! I guess everything happens for a reason!! :)

Alright, I'm off to do some homework and then to bed... hope everyone else is doing great!! Sheila---I'm dying to know how Malayna is doing in school, girl!! Update time, everybody!!!! :)


Ellen :)

Going to "real' school

Logen goes to Kindergarten tomorrow. I have dreaded this day for a very long time. Probably since 'around the time of diagnosis'. I have always viewed 'real school' negatively for Logen. (Since I have such a positive outlook on things... ha) I hated knowing that he'd be in the "Special Ed" class, even though thats not what they call it at his school. That'd he would be classified as 'different' for lack of a better word. Kids are mean, I was one once- I know how people treated 'those' kids.But, tonight I actually am excited for Logen. I think he will do wonderfully in the class he will be in. While I will always hate the fact that he's not in a 'regular' class, I know he couldn't handle a 'regular, mainstream' class. And, who's to say that someday he won't be in a regular class? Couldn't handle seems negative- it wouldn't be a good placement for Logen, he's not ready for that yet. And, I know he's not ready for a typical Kindergarten class either. We are still working on communication with his Aug Comm device, we aren't to the point the other kids his age are. And, that's ok. Today must be a good day, b/c it doesn't make me cry that he's not there yet. He's working at "Logen's Pace" and when Logen gets there, he will get there. He's a pretty determined kid (anybody ever been with him & I at Walmart? Or any other public place that he may want something I am not going to buy him? He's pretty dog-on good at being 'determined')So, really- we just ask for prayers for Logen. B/c with God, ALL THINGS ARE POSSIBLE. I know that tomorrow when I am in class I will be worried sick about him and how's he doing. So, maybe you could say a little prayer for Momma to. I'll update tomorrow evening, when I am suppose to be doing homework... like now.

Lost

(Dual Post on my blog and this one- I need that much help!)
I've been crying a better part of today. I'm at the part of the road where a turn is obvious. Normally, I'm fairly good at staying in control and making the right turn w/o regrets. This turn, however- I can't seem to make.

From last night's post here, you know I'm considering other options 'therapy wise'.

Today's events: Logen has been getting Developmental therapy through the public school since last Fall. I had a meeting with the DT today. Of course, at an IEP you must meet with more than just the DT. The Assistant Special Ed director was also there. Since Logen is technically school aged, there is not a whole lost the district is able to provide. We did turn in a waiver last year so that Logen could still get DT services through the school. However, today they suggested starting him in Kindergarten, like next week. Most likely, he will have to repeat. But, in the scheme of things- we didn't plan on starting him until next year anyways, so repeating wouldn't be so bad. And, yes- he'd be in special ed. I go Thursday to tour the school (it just opened in August, so everything will be shiny) and to meet the teachers, principal, aides, etc.
Why have I been so sad about this? Therapy, mainly. It sounds so silly now that I read it. But, he's not getting what he needs right now. So, could it hurt to take him out of it and rely on the public school system to do whats best for my baby? What if I am making the wrong choice? What if I totally screw up Logen b/c im just not competant enough to make these major life-altering decisions?I don't know what to do. My Mom told me to stop crying and go with my gut instinct. I don't have a gut instinct. Really, I don't. I get negative from one person and positive from another. That's not helping. She told me to stop worrying and just let it be until Thursday. She also said I can't hold Logen back b/c of my fears to 'let him go'. That much makes sense, but I don't think thats all. I'm scared, very much scared. And, I want to stop crying, but I can't. I don't like not being in control of things. On this one, I'm way out of it. What's right? And, what's the wrong choice here?

WHAT DO I DO????
What's going to be best for Logen? My non-verbal little bundle of joy.So, blog family please help me. I need to lean on you b/c I can't do this alone. It takes a village to raise a child, remember? Come out and help me Village :)

Jason is turning 10!

We are so proud of him! He has beat substantial odds and is turning into a son we are very proud of. I am going to copy and paste below what I wrote in my blog on myspace below. I have to say that Jason has taught us soooo much and to be very thankful for all the good around us. Sometimes life can be so unfair, but how you choose live with what you are dealt is what makes our days happy ones. Here is my entry from my blog...

Our little boy with be 10 years old in just a few days on September 7th and is going into the 4th grade at school!!!! He is getting so big! Where has all the time gone? Seems like just yesterday he was born. We are so thankful to have been blessed with such a great gift as Jason. Every day is a new adventure with him. Even though he has been dealt some cards in life that some may view as unfair, our son is very resilient and he makes the best of it and has a ton of fun doing it. He has beat all the odds that were stacked against him at birth. Every time he hits another milestone or achieves a goal, we just want to stand up and cheer! He wakes up every morning with a smile on his face and ready to go for it....We love you Jason! And we look forward to many more years of adventure with you Mr. Moo. (He would hurt me if he knew I was posting that nickname, LOL. He has informed me he is too old for these)

Nicholas's full report explained

I just wanted to die after his appointment, believe me we now know how lucky we are to have him. Nicholas actually has a very severe form of PVL (Periventricular leukomalacia) his is actually so severe we were told that 75% of neonates that are dxed with it as severe as his are dxed during autopsy!!! Of the 25% who go home they usually have severe spastic quad CP, 23% are severely mental handicapped, 38% are mod, 38% mildly, and only 1% "normal", most are either deaf or show severe hearing loss, vision problems, and so on. The doctor that was explaining it to me (while me and DS1 because he was with me) said "he should be much worse, with the amount of damage he has I'm surprised he's even doing most of what he's doing. He has so much damage...to be honest it's like I'm looking at the wrong child." To be honest I wanted to puke! He did say that there was no signs of a brain bleed or anything else and he feels it is 110% caused by the distress he was in during labor (the hospitals fault). He *TRIED* to pull up the CT report from their hospital (the one he had in December) and it's "missing" the only note about it was made by the ER doctor and it says "mom thinks CP caused by problems during delivery, CT scan shows everything is "normal" and this is a classic case of Cerebral Palsy with no known abnormalities". The doctor said this was total BS that there is no way even without contrast that they missed this amount of damage...it is just that bad his brain is no where near being "normal". This all leads DH and I to believe that since I admitted I think they caused the CP that the doctor/tech was trying to cover for them and hid it, which just makes me SICK! We are just so very very lucky to have him in the spot that he is in, he could have been so much worse. I am kind of thankful in a way that it took so long to find the real cause, I don't think if they would have put him down as having little hope for a normal life that they would have tried so hard to "fix" him KWIM? I've seen it first hand in clinic, kids that have the potential to live a normal life get better and more therapy then a child who was basically put down as having little hope of leading a normal life. Having it all totally explained and told exactly what it all means/meant was a bigger blow and bigger shock then reading it....we are SO LUCKY to have him and have him doing as well as he is doing.


Anyone else been told their LO has severe PVL??

Visitors!

1, 387! Did you see that? Our blog has had lots of traffic in less than 2 months. It's a big deal to see you gals posting here for me. It's taken a lot of time to get going (and I still have several pictures to create & add that you've emailed to me), and I would be terribly sad if nobody came to visit it. Thanks!!! Have a wonderful day :)

HAPPY 5TH BIRTHDAY, LOGEN!!!

Just wanted to say HAPPY 5TH BIRTHDAY to Logen!!! I know he's on a fabulous vacay at the beach...probably sipping on some apple juice on the sand :)
Have a great day, little one!!

Quick Update on us

Hey all, sorry I've not updated in so long! Things have been incredibly hectic around here. We got Bri's first manual wheelchair finally, in July. It's a cute little Zippie Tilt & Space, a purple frame, with lavender and black upholstery, and her name embroidered in the back. Brianna LOVES sitting in it...she spends most of the day in it when she's at daycare.

Speaking of daycare...don't know if I had started working again last time I updated or not. But work is going well. I'm working providing residential care (cooking, cleaning, passing meds, helping with hygiene, etc) for developmentally disabled adults. It's a great job, with good benefits, and my clients are wonderful. Right now, I work Wed-Sun, from noon to 8:30pm, and from 1-9:30 on Saturdays. Wed, Thu, Fri, Brianna goes to daycare, and she loves it. The gal has worked with me on her rates, and is only charging me $300 a month for Brianna, since we receive an additional payment for her childcare through the Inclusive Childcare program. On the weekends, there's a 19 year old girl who comes into our home and watches Bri. Both caregivers are wonderful with Bri, and Doris, the DCP, has said I need to get a Mon-Fri job, so she can watch Bri five days a week :-D.

On Tuesday of this week, we enrolled Bri in preschool, finally. She starts at the school just down the street from me, on Sept. 8th, on Tuesday and Thursday mornings. In October, her IFSP is up for reevaluation, so if she is doing well going two days a week, we might increase to three days a week. I'm sure she'll do wonderfully. Me, on the other hand...well, that remains to be seen. I mean, it's not like she hasn't spent whole days away from me before. It's not like she hasn't been going to daycare consistently for the past several months. But this is SCHOOL! It's the next step in the life of a child! It means my baby is growing up! And I really don't know if I can handle that. Anyway, that's all for now!

Hey all!

We've had a really rough month here. Nicholas needs to be circumcised, not sure if I posted about it already, and is being booked asap now to get his eyes fixed because they have gotten really really bad over the last two weeks. He is going back to the eye clinic again in two weeks for an alignment check and because she wants to keep a closer eye on him until surgery but he does need glasses asap. In two weeks time his eyes have gone from 1.25 and 1.75 to 1.75 and 2.75 not sure exactly what that really means but she said it should be changing that fast and needs to be treated now. We also got the full results back from his CT w/ contrast and after reading it I just wanted to puke, I kept thinking to myself that it was not his report and they must have sent the wrong report over. I didn't think they would be as bad as what they are but it's like two paragraphs of "severe damage to ____, ____ area noted to be small, _____ area has small deformity, severe white matter destruction in ____ area, ____ area has minimal white matter, partial right plagiocephaly noted, patient has a pineal cyst measuring 1cm" sorry can't remember all the parts of the brain it was saying it was all too much to memorize! As for the pineal cyst they are usually common findings and almost always less then 0.5cm and asymptomatic but his is 1cm and symptomatic (they are figuring because of it's size it's the cause of his head aches) it could also be the cause of some of his other problems and we've also been told if it continues to grow it can start to cause obstructive hydrocephalus at 1.5cm. Needless to say it's been a lot to take in and we are still trying to absorb it all, we are in shock still, NOTHING can prepare you to hear/read all of this!

Otherwise we did have a great day on Sunday, we went on the Easter Seals cruise with Nicholas and Joey (Matthew stayed with the IL's) and we all had a blast. It was also Joey's 10th birthday, how time flies...I feel old now, so we did a bunch of other things too but the cruise was the highlight of everyones day. Nicholas really enjoyed it even though we didn't think he would because of his phobia of water but he fell in love with boating and the couple that took us out. Joey on the other hand had a few points where he lost it and freaked out, as soon as the wind hit the sails and tipped the boat sideways he freaked out but each freak out only lasted a few minutes and them he would calm down and get right back into it. He also got to steer the boat and was very excited to do this and got to help put the sails out and other things that needed to be done. It was a really good day and for once it didn't rain on us lol which was a shock since lately every time we go out with them it starts pooring!

Hope you all had a wonderful summer...sadly it's quickly coming to an end!

-Liz

Emma and I are back.

Sorry that I haven't been around lately. We have taken several small trips lately, visited a few doctors for checkups (YUCK), visited family, and done some more therapy for Emma. I wish I could note dramatic improvements, but none to report.

I really hate that I have missed some birthdays and important events among you all, but having a CP kiddo keeps me running. I am sorry, but I have truly enjoyed seeing the pictures of all the little cuties. They all look so sweet and so "typical," and I mean that as the best of compliments. I know I love it when people say Emma looks typical in her photos. It's not too often, but great when it happens.

We have recently looked at some wheelchairs/seating combos for Emma. Yikes are they expensive, and I have a $1,000 co-pay on durable medical equipment, which bites!!!

Can't wait to get caught up. You guys are the best, and I have totally missed you all.

Wow, it's been awhile!

LOL, I can actually access the blog today from work and so I am trying to get caught up with what everyone's been up to. Forgive many of my late late (and likely impertinent) comments. Anyway, work's been kicking my butt to the tune of 60 hours a week. Nights, weekends and days. But we're nearing the end of the project so woo hoo!

As for us, Hunter gets his AFO's tomorrow and I'm so totally nervous. Excited that I really think this will help us turn another corner, but nervous none the less. We're doing PT once a week now and after our big appointments we added speech/oral therapy twice a month too and we'll go to OT at least once a month (they'll tell us at our OT appointment tomorrow how often they want him to go). He's stopped sitting but W-sits with the best of them. Still "crawls" in his own cute way. He can pull up but is totally on pointe. Hopefully the AFO's will nip that in the bud. We'll wait until the end of the year to make a call on the botox injections or casting. The neurologist we met with said he thinks Hunter's brain damage is in the basal ganglia and in it's connection to the thalamus. This explains his sleep issues, the motor function and unfortunately what seems to be creeping up as emotional/behavioral issues as well :( We will know more when we do another MRI but we'll wait for awhile so that the picture is better (between 18-24 months old). We have finally started getting some sleep though because we were given the go ahead to give him benadryl and melatonin at night. Doc said she'd give him valium or baclofen if we wanted but I wanted to start small and see if we couldn't make do with OTC. I'm chickening out on the lawsuit but I still think about it a lot. It's not out of the question but I don't know if I can handle it mentally. I need to get settled with it all before I make the final decision. Man, am I long winded today or what?!?

I don't see an update post but I'd love to hear what everyone's kiddos are doing!!! Post em here if you don't mind!! (or we can start a separate thread).

Anyway, I love seeing all these pictures up and I'd like to post some if I get some cute ones. Can anyone tutor me on how to do it? I want to get a picture collage too, I just haven't downloaded any pictures in forever!! I look forward to being able to come on the site more and keep up a little better. Our best to everyone :)
Kristi