Nicholas

while things are going....that is about all I can say, sorry it's been so long but we've been mighty busy with endless illnesses in this house. Everyone seems to just keep passing bug after bug around UGH! While anyway Nicky's doctor from the asthma clinic is on mat leave and a respiratory specialist from sick kids has taken over for her, and it's a mixed blessing. After being told SINCE BIRTH his day-time snoring was "normal" and he was just a "grunt baby" we are now told it is "far from normal". After reviewing his records and checking him out she is almost 100% certain he is suffering from micro-collapses in his lungs while he's sleeping, but she did say his issues could be caused by two things or a combination of the both (but is still certain he is having collapses and tests with confirm it). She said he is either having the micro-collapses, breathing in food/liquid, or both which is why he's having so many bouts of URIs, pneumonia and his asthma is still out of control so he is being booked for a sleep study and feeding study. She did say that less likely he is seizing in his sleep but is highly doubtful of it but it will still be looked at as part of the routine when they do the sleep study. We've also had his meds changed a bit so hopefully we will see some better results now but we go back in 2 months for her to reaccess him. He also goes in in February for the last measurements on his eyes and he's finally having his surgeries booked so it's going to be a long year by the looks of things. Two eye surgeries, a sleep study, and a feeding study...OH BOY WHAT FUN! Please keep him in your prayers and pray that she is wrong about the micro-collapses and the breathing his food/drinks in. He has enough on his plate already poor boy doesn't need any more things to deal with!!!!

On a good note 4 days shy of 10 months Matthew WALKED! Yes we have a walker now lol he also like climbing EVERYTHING you turn your back even for a split second and he'll go from the floor on the other side of the room to the back of the couch and lay of it and wave at you with this cute little grin on his face like he's saying "HA HA Mom you aint fast enough to stop me from climbing on the couch" lmao so as you can imagine he is keeping us all on our toes! He has also mastered climbing almost out of the crib and scaling baby gates.....that has made child proofing attempts far from easy lol it's more like an adult obstacle course when he decides to take off, but at least I'm getting my exercise....who needs weight watchers when you have a very active baby on the loose?

-Liz

Karen & Jackson

Hi all, just wondering if anyone ever hears from NJ Karen and how things are going with her. Darts to BBC for making everyone disappear!

DESPERATE NEED OF PRAYERS

Logen is in DESPERATE need of prayers. I am in no shape to repost here. Just pray for us, For Logen really.

Our new blog link: http://splendidmayhem.blogspot.com

Nicky-update

I updated our blog lol and it is LONG! Lets just say it's been a long few months! Nicky has been sick most of the time he's been in school, but is doing so wonderful there, has had many asthma attacks, migraines, and three bouts of pneumonia and is on a whole list of meds now. He is now on maintenances doses of Naproxen for his migraines (after 3wks steady to break the cycle), FlowVent & Ventolin (sp?) for his asthma and dex when his infections get into his lungs, advil & tylenol to control the pain of his muscle spasms, colease (sp?) for his bowels, and has been off and on antibiotics for the past three months and they are wanting us to look into botox for his legs! He will be booked for his eye surgery after his next eye measurement in Feb (they want another measurement in hope they do it 110% right the first time so he wont need another surgery) but has avoided the surgery on his penis YAY! AND AND AND He FINALLY has his new AFOs YIPPEE!!! They don't come home for another lil bit because they want to make sure they fit right and they work alright for him, they are at the school, since they have already had to send them back once but OMG we are so happy that he finally has them again! I posted a ton of new pics on the blog since we haven't been on to update in ages but since things have calmed down a bit I think I will be able to keep up with it better lol

-Liz

NBBC

I just wanted to let you all know that I started a roll call post on the NBBC, so if anyone is interested in joining us over there also, feel free. Let us know you are there!
Thanks

I HATE Babycenter.............

I feel like they have completely tore us all apart. I miss all of you so much!! I know we have this blog & many of you have your own blogs (which I check religiously!!)...but it's not the same :(
I think about all of you soooo much & wonder how your kiddos are doing....has Niki had her baby?? What about Carolyn?? UGH!!
Sometimes just logging in to BBC made my day a WHOLE lot brighter....especially if I was having a "downer day"......
I just wanted you all to know that I DO think of you all often & I hope you are all doing amazing! We are good here...Joshie is in Kindergarten & loves it!! Mia will be 2 in January!! (WHAT??) She's quite the entertainer.....LOVES her brother to death & really helps him out when she can...
I guess I am just trying to say that I MISS you all TERRIBLY & think of you all often!!
LOVE & HUGS TO ALL OF YOU.....
& I promise to try & post more often....

Research on Service Delivery of Care to Children who have Had Strokes - Please help!

This post is intended for parents of children who have had strokes.

As a parent of a child who has had a stroke myself, I have become interested in researching the service delivery of care to children who have had strokes.

I have been provided the opportunity to complete an independent study of parents and medical professionals to determine the current state of service delivery of care and to compile recommendations for potential improvements.

In order to compile data for this study, I am requesting your participation in a short survey.
This survey is intended to be completed by the parent(s)/guardian(s) of the child and/or the medical professionals providing care to the child. If you are in contact with multiple children who have had strokes, please feel free to submit a separate survey for each child

The survey is located at:
http://www.surveymonkey.com/s.aspx?sm=7EFkdmBoALXzhGozKQOi_2fw_3d_3d
(If you are unable to click on this link, you will need to copy and paste it to your web browser)

Please feel free to distribute this survey link to other parents and other medical professionals who work with children who have had strokes.

No identifying information will be collected about the child who had the stroke or about the person who is completing this survey. All questions are optional.
If you have any questions about this research, please feel free to contact me directly.

Thank you for your time on this effort!

Kiera

Update-Ben

Hi Ladies,
I wanted to post a quick update on Ben (22 months). He seemed to have hit a road block with wanting to stand (he gets soooo nervous, and just wants to sit back down). The PT has decided that it is best to go forward with the AFO's. She thinks that will help his balance, the way his feet/ankles/legs are positioned, as well as his confidence. We are going to a Rehab Dr at Children's Hospital of Milwaukee to get a second opinion before moving forward.
I have mixed emotions, but I am mostly ready for him to feel confident to move to that next level. I am concerned that he is moving a bit backwards(he had much more interest in pulling up a month or so ago).
I will let you know how it goes tomorrow.
Take Care,
Carrie

My baby turned 5 this week!!

My Emma turned five this week. Where did the time go? It seems just like yesterday that we brought her home, scared and afraid for her future. I nearly worried myself to death those first couple of years, and I wish I could get that time back--knowing what I know now! Oh well, you know they say you can't go back.

Emma has been doing very, very well lately. She got flowers from her PT clinic about a week ago for doing so well walking with her walker. She is still not completely independent yet. She just cannot seem to control the walker she has. I will take anything in the physical department though.

Her language is getting better. She can be very low volume at times, and her articulation can be hard to understand--but her mommy and daddy and grandparents understand her for the most part when she does try to talk. Her favorite things to say are: "NO," "NO MOM," and " I don't want to." I wish I could get an, "I love you." or something like that once in a while, but again I will take what we can get. We have been recording more of her talk when we can catch it on a recorder. I miss a lot because she talks when I don't expect it.

She is reaching better. If you will remember she hardly ever used her arms and had hardly any purposeful use of them. She is now reaching to show us what she knows. It is a spastic, fisted reach--but again we will take it. She can now really show us how smart she is by pointing to words, letters, numbers, multiple choice question/answers and things like that. She does it now all by herself. She appears to be at or even above age-level in many things. I don't like to brag! (Oh, I am lying there!) But, I wasn't sure that I would ever be able to say that, especially early on. I think everyone is impressed, and she is finally getting some respect. That makes me happy.

Well, that is about it. I miss you ladies a bunch.

Here is a picture of Emma at Toys R Us. She got to go for her birthday and pick out of few things. She and my parents overdid it just a little. She had a blast. She is finally able to see and appreciate toys and games and just going to a toy store. Oh, the little things that other parents take for granted.

She smiled the whole time!! She was so excited. It was a good day!!! God knows we have been praying for days and moments like these.

911 Call

Today has been interesting. Interesting. At 8:04am my phone rang- I missed the call b/c I was dropping Parker off at daycare. At 8:05am I was in the car heading towards my school and listening through 14 voice mails to get to the one Logen's school had just left me (if that tells you anything, I don't listen to voice mails very often)The lady had said Logen is in the nurses office and they've called 911. Please call them.I freak. 1st thing that comes to mind: Seizure. Bad one. Tears, why couldn't this have happened when he was near me?!I regain composure and call them back. She said he was on the school bus - and had been seizing for about 2 minutes before he even got to school. I can't remember if they had phoned ahead to warn them or not- whoever was there to take him took off running to the nurse's office. The nurse immediately gave him diastat (a form of valium administered rectally). This stopped the seizure. They called 911 and then me.I headed towards his school. Thankful I was still in town (well, the next town over- but my school is a good 40 minutes *atleast* from Logen's school). I turned on my flashers and drove like any paniced mother would.When I got there the paramedics asked if I wanted them to transport Logen or if I wanted to. I said them. He was still lethargic and really not even holding his own head up. There were several people in the nurses office with Logen. The nurse was holding him and his teacher was standing next to them. The assistant principle, office ladies, and 2 paramedics were there 2.We got in the ambulance and headed to the hospital. Logen's teacher drove my van to the hospital so I would have it there. I really thought he would have slept on that drive, but he didn't. He was so out of it. He would have been so excited if he had known he was riding in the back of an ambulance. The paramedic riding back there had been to the school the week before to show the fire truck off and remembered Logen. He said he loved it!When we got to the hospital Logen was still not totally with it. The Dr there called and spoke with his Neuro at the CP Center in St Louis. They said we did the right thing and decided to up his medicine again. He's up to 75mg of Zonegran/AM and 100mg/PM. He was checked over and besides the fact that he'd just had a severe seizure, he looked good. So he was discharged.We got home and he slept til about 1:30 this afternoon. He cried when he woke up, he tried to walk but was so wobbly. He ate a little oatmeal and was starting to get his normal color back.I spoke with the CP Cntr nurse this afternoon and she said she'd call me back in the AM about this. It's alarming to me that his seizures are getting worse. Today's seizure was classified as tonic-clonic. Logen has never had this kind before. Nor has he ever had one lasting over 2 minutes. I'm worried about this. Personally I think if they are getting worse- there must be something we are missing. How is it that seizures just pop up at 4.5 years old and become worse as you increase the preventative medicine? I'll post an update when I get one.The nurse called this afternoon to check on us. I also spoke to Logen's teacher (everybody wanted an update) She said when the bus got to the school this afternoon, they ladies had tears in there eyes-- they were so so worried about Logen.I am absolutely AMAZED with his school. So far, in every aspect they've gotten a A+.I missed class yesterday- Parker has a bilateral ear infection. One he's had for about a week we didn't know about. We got numbing ear drops- they looked horrible. He hadn't had a fever- just wasn't sleeping. He still doesn't have all of his front teeth in, I chalked it up to teething. Guess we won't do that again.

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 :)