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 :)

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

Meeting up!

Suzanne was in town this evening and we had a chance to meet up and talk in person. I thought I would share a couple of pics, so you can see Sammy and Reichen together. It is so nice to spend a little time with another family who is have similar experiences.

By the way, I have to say that Suzanne has some of the cutest, best behaved kids I have ever met! It was a great time :)

If you are interested in seeing more pictures of the evening - click here

HAPPY BIRTHDAY!

HAPPY 2nd BIRTHDAY MIA :) Hope today was great!

CP Magazine

Cerebral Palsy Magazine
I found found some great articles from this magazine. Wasn't sure if anybody else got the magazine, so I wanted to post the info needed to get the mag. There are older issues you can download for free. That may help you make your decicion :) Let me know what you decide. I'm also game for paying one year, reading the mag and passing it on. The when renewal comes up the next somebody else pays, gets to read it first and mails it to me :) I'm half asleep... did that even make sense?! I'm heading to bed :)

MRI tomorrow

Austin has his MRI tomorrow. I'm anxious to hear if his brain has had any changes since his CT scan when he was only a few weeks old. But then I'm nervous about the day, sedation is never fun and I know he'll be starving by the time it's over. Plus he has such high doctor anxiety these days, I know tomorrow will be crazy.

Wish us luck.

W Sitting

Hi Gals

I hope that you are all doing well. Sorry about not being around much. The summer has been beautiful and I have not been spending any more time on my computer than needed for work. I am sure I will get back into it once school kicks up in September.

I do think of you all often and enjoy reading what your kiddos are up to!

I am looking for some advice from you Mommy's with older little ones. Reichen is now able to transition to sitting and he often transitions directly into the W sitting.

We are constantly giving him the verbal cues to straighten his leg and then straightening them for him. I have talked to our physiatrist and OT and they recommend that we do not have him sit in this position since it can cause issues with the hips.

Did you see the tendency to W sit? What was the most effective way to stop it? Any advice is much appreciated. Thanks!

Since it has been a while -- here is a recent pic of the little dude:

Blog Music

Hey Girls! I added a song to our blog~ Let me know what you think. I think there may have been issues with blog viewing for some of you one a playlist was added. We can 'do away' with it if it's a view problem. Do you have any more you'd like to hear on the playlist? I could only think of 1 good 'appropriate' for our blog song.

fixing a blog link...

Just wanted to fix Dawn's blog link to the right... it's spelled incorrectly and therefore doesn't link you to the blog... it's actually saintprairiedawn.blogspot.com

FYI


Ellen :)

Hello everyone!!!!

Heh Ladies!!!! How are you all doing? Sorry I have not been on here yet. But between home stuff and occasionally getting onto BBC to check and post every so often, I don't seem to have time to go anywhere else. I wanted to come on and say hi though. I do have my own blog if you want to link in, but I am not sure if I have the privacy settings right on it. Can anyone help me with some advice on that? I am REALLY new to the whole blogging thing, LOL. I hope to be able to keep up soon. Hope you all are doing fabulous!!! Take care....

Alais

Blogs

You should notice the 'new' blog list on your right. If you do not want your blog listed, let me know so that I can remove you. If you would like to be added, also let me know.

Joshie is 5!

Hope you are having a great 5th birthday! Share some cake with Mia :)

I *hate* to be a downer but I have to ask.....

Why us?? Why did God choose me & my family to go through this? Why did He choose you all?? In light of Joshie's 5th birthday tomorrow, I am happily bittersweet. I am so proud of my boy & how far he has come, how much he has accomplished....but on the other hand, WHY HIM???? He should be out running through the grass on his birthday, playing in the surf....but my son is (happily) cruising around in his walker....because he has CP. It's NOT FAIR!! I'm angry & I'm sad. Does God *really* think I am strong enough to endure all of this.....not to mention my little boy!!!!???? WHY? WHY? WHY? Just when I think I have wrapped my brain around all of this.....a day like this appears out of nowhere. *SIGH* another joy of having a child with special needs.
I'm sorry to be a downer but it's just "one of those days".......perhaps tomorrow will be better but for today.....I will just wonder..............

Candid Camera

I knew that YOU GIRLS would "get this" more than anyone else. The other day, we were at an indoor market place, and Ellie wanted to stand at the railing. I was actually able to leave her there for 30 seconds, and she stood on her own, holding tightly onto the rails! For those 30 seconds, she looked completely "typical". Like any other three-year-old little girl. I actually thought to myself, "wow, she's taller than I realized", because I never see her standing upright, all by herself.

Anyway, it was kinda nice, and I thought y'all would see these pictures in a special light:

Logen Update

I posted an update on my blog about our St Louis trip. The gist- he was put on 4 meds and his seizures have the potential to be fatal. Crappy news!

http://duncanfamily2004.blogspot.com/2008/07/seizure-update-st-louis-appt.html

Play Time :P

I'm excited :) Hannah's Mommy (Trina) is flying in to hang out with us for the weekend!
Watch out Arkansas, here comes trouble :P

**EARTHQUAKE**!!!!! We're safe & sound.....

This morning at approximately 11:42 am So Cal had an earthquake!! I've lived here all my life so this is nothing new, however, this is the 1st "big one" since I had my kiddos & I was terrified!!! 1st instinct was to grab them both & run to the doorway until the shaking stopped. Of course, it didn't faze either of them & they were actually mad that I took them away from "Barney"!!!
The early reports are reporting that it was a 5.8 & centered in Chino Hills which is about 35 miles away. But the shaking was strong & the rumbles were loud! It always amazes me how you can actually HEAR the earth shake....it starts out like the earth's stomach is growling & just gets louder & louder!!....SCARY!!
Anyways, we're all o.k....just wanted to let you all know :)

Nicholas

I updated my blog the other day with the story about Nicholas's eye appointment. I'm too lazy right now to copy & paste it but the gist of it is Nicholas is going to need surgery to fix his eyes =( Glasses just wont cut it any more and the patch is not an option because of his bouts of severe head pain. They are hoping to have him booked within the next year to have the surgeries started he'll need two, one per eye, and then patching or glasses to fix the vision issue in his one eye.

On the upside Nicholas has been discharge from NICU follow up and is now NICU alumni, so we now get to go to all the alumni picnics and get togethers!

-Liz

We made it!

A brief post... we made it to St Louis. Logen's appt at the hosp is in the morning at 8am. I will update when we get back to our hotel. I'll post pictures on my family blog, but won't duel post those here to. Lazy me. :) Pray for answers!!!!

*Update on Andres' botox surgery

Hi ladies! I'm sorry that I haven't had a chance to give an update, so here it is:

Andres wasn't given anything this time to relax before they put him to sleep, but he didn't even cry when I handed him over. I actually had a harder time than he did! I was called back when it was about time for him to wake up, and he woke up alot better than he did last time. He was casted while he was asleep, so I was warned that he would be really sore. I gave him Motrin all weekend long to subdue any soreness that he might feel. But the best part of this whole thing is that he took to his walker the same afternoon of the surgery! His dad took some time off work to help out after the surgery; he really is a great dad.

Anyways in conclusion, for any of you that are thinking about this for your child; I think it is great. But I think it would vary on what your child is/may be allergic to. I know there is one mom in particular that tried on this board and it didn't go well. (Please forgive me; I can't place your name @ the moment) If you have any questions in regards to my experience with my son's botox injections or serial casting, please don't hesitate to ask. I'm happy that I have all of you ladies to share my joys with and to help me with my strength when I'm feeling weak.

Sorry for making this so long! I hope that all is well with all of you!

<-----(my sons)

Andres (with his walker) & Diego

-Angelica

He's Weird, Whaaaaattttt?

{I'm Duel Posting Here & On My Blog}

I wanted to blog this the day it happened, but I couldn't. I can't let it sink in b/c then it might be real. The truth is, I know it's real, but that doesn't make it suck any less. Here's what happened.

Logen & I walk into preschool, happily. He wonders off to play in the kitchen center. I sign him in and walk over to kiss him good bye.
Little girl, age 4 or 5: He's weird
Me: What did you say?
Girl: I said, he's weird
Me: Why do you say that? (My heart is beginning to sink)
Girl: Because, he walks funny and he dribbles {meaning: he drools, CONSTANTLY}
Me: Well, everybody is different
Girl: Yeah, but why is he so weird?
Me: {Oh, God, please carry me out of here without crying. I can't do this! I can't. She's just 5, she doesn't know it hurts me. She doesn't understand}
Me: Well, Thats the way God made him and it's ok that he's like that, he's special. Just like you are special. Everybody here is special.
Girl: Oh, he gets everything wet
Me: Turn and walk away with tears in my eyes. Stare at teacher, not sure if she heard me. This child is not in his class, so she's not been told the "I'm special" story. It's ok. We can do this. Really, we can. It's going to be fine.

And, I think. He's 4 and a half. He goes to kindergarten in 2009. What do I do. If kids are already starting to notice the difference and point them out now, how do I handle them then? Will they shun him? OH, I just don't think we can do this. And, Logen- Logen can't explain to me how this makes him feel. It hurts me more every time I think about. A 5 year old hurt me this bad. How do I deal?????????

~*~*~*~ Jessica ~*~*~*~

speaking of hippotherapy...

I was inspired by Melissa's pics of Joshie on the horsie to post a pic of Sammy's own brand of hippotherapy with my sister Mary and her horse, Amber. We went to the barn the other day..it was SO hot amd humid, but Amber was a trooper! She's a sweet horse... Luke took a ride, too...he's been riding her since he was 2!! :) They love it!! (Sammy cries when we take him off!)

Happy Birthday, Melinda :)

Happy, Happy Birthday, Melinda!! :)
Hope you had a fabulous day.....(sorry this is technically after midnight...) ;)

Hugs,
Ellen, Luke, and Sammy :)

My 1st blog post....ever!!

O.K. girls, bear with me. This will officially be my 1st blog post ever!! YAY!!! Like Chrystie, I don't *really* have lots of news with Joshie. He's in summer school until Wed. of next week then he's off until Sept. We're quickly approaching his 5th birthday (the 31st) & I STILL am having a hard time wrapping that around my brain.....where did the time go??

He's LOVING Hippotherapy & I really can tell a difference in his core strength since he started. It's really gotten alot better & his 1-hand supported walking is really improving. I think we still have a ways to go to the ever elusive independent steps but he is on the right track.

That's about it for us. Mia is almost 18 months & is SUCH a chatterbox!! We call her the little monkey cause she climbs on EVERYTHING!!! She really looks out for her brother is constantly smothering him with kisses (which he's not really into ;)

That's about it with us...taking the kiddos to Disneyland tomorrow to celebrate my nephew's & Joshie's b-day!! I'm sure I'll have a TON of pics to share!! For now, here is one of Joshie on his horse, Peanut & another of him at the park on the swing...his FAVE!!! Look at that smile!!!!

This n' That

Oh girls. Accept my apology for my serious lack of communication lately. Things have been busy, and for some reason, my posting motivation has been really low. I have a hundred things to say, both to you and on my personal blog, but regurgitation from head to screen is sometimes overwhelming and unattractive. So, basically, I have no good excuse for my absence. But, I've been reading and loving, I promise!

I'm not really sure there's much to update with Ellie/us. Things have been pretty status quo for Ellie in the mobility department lately (maybe that's one of the reasons I feel unmotivated to post anything). It's, of course, frustrating. But, she's happy, and hopefully honing the skills she HAS learned, so these "down times" aren't completely useless. Right?!

On a positive note, Ellie's speech has been improving daily it seems. She's still well behind for her age, but she seems to add a word every day, and she's copying our sounds a lot better. I love seeing the wheels turn!

I thought of you girls the other night, because I wanted to rush to the computer to vent, knowing you were the only ones who could REALLY understand. Here's what happened:

DH and I help lead our senior high youth group at church. We've been very open with the "kids" as to what's going on with Ellie, and they have really grown to love her. The other night, we had a bonfire at our place for the kids. We also invited the "newbies" who will be freshmen in the fall. Of course, they were new faces to me, and vice versa.

It was time for me to put Ellie to bed, so I was making "the rounds", saying goodnight to all the kids. When I got to a group of new, unfamiliar freshmen, I told Ellie to "say night-night". One of the boys replied to her with, "Good Night, Golden Retriever!"

At first, I thought he was referring to the color of her hair. I thought it was a little odd, but a LOT of odd things seems to come out of the mouths of 14-year-old boys! BUT, the boy continued,

"I once had a Golden Retriever dog who drooled a lot too. She reminds me of that dog."

GULP.

I was so taken aback that I didn't know what to say. The ironic thing is that I had just been thinking that Ellie's drooling was improving! Of course, she ALWAYS drools more when she's tired, because it becomes difficult for her to keep her tongue in her mouth. Since she had already been up two hours past her bedtime, she was REALLY tired by this time. So, yes, she was drooling.

I didn't want to make a scene (and I wasn't sure how to respond to this boy), so I just gave him a disgusted look, and went into the house to put Ellie down. I really *do* think it was just a 14-year-old boy who didn't realize what he was saying. Because he is unfamiliar with us and our family, he didn't realize that there was anything "different" with Ellie. I'm going to give him the benefit of the doubt...for now.

Of course, it made me think about the future and how many stupid comments Ellie would have to field in her lifetime. SIGH. It makes me want to envelope sweet Ellie in my protective arms forever. It brings tears to my eyes to think of how tough our kids' skin will have to be.

I've also been thinking about my reaction to this comment, and I wish I could go back in time and change it. I wish I would have said something to the boy. Unfortunately, I have a sneaky suspicion that I will have more opportunities to respond to rude comments (from other people) in my lifetime, so hopefully this will prepare me for a good comeback. People need to realize that they can't go shooting off their mouths.

Anyway, this has become a novel! All this to say "hey!" to you girls!!

Chrystie (Ellie 3-15-05, SDCP)

Hearing test

I posted this on NBBC also, but since most of us are not there anymore, I thought I would finally give the blog a try (I hope I do it right)! Addison had a sedated ABR (hearing test) on Mon. it was a such a mess, she would not go to sleep after they gave her the medicine to sedate her, they had to give her a second dose and she still fought me so hard to go to sleep. She ended up crying herself to sleep. I was convinced there would be no hearing loss, well I was wrong, she has mild to moderate loss in the left ear, it just broke my heart to hear this. Now we need to see the ENT and see what he says. We have been told she may need a hearing aid, and on the other hand we have been told that with just moderate loss in one ear she may not need anything, who do I believe? Anybody out there with experience with hearing loss/ hearing aids? She is only two and I really don't think that at this point she would keep one in. Any words of wisdom?

Kara

If you know any CP mommy's near Toronto Ontario

Tell them to print out this flier and get their butts down to the Ontario Federation for Cerebral Palsy office! They are giving out FIVE free toys to every child with Cerebral Palsy who goes in there this Friday and Saturday WOOHOO can you guess where we are going this weekend? lol Brett Carleton and his family donated a crap load of toys to them to give out, I thought it was wonderful! Nicholas is so excited he can't wait to get his toys, they aren't adaptive or anything they are normal everyday toys so I have no idea what he'll end up getting! By the looks of it though they have a lot of educational toys (my favorite kind!) so I hope he gets something that will keep his interest lol

http://www.ofcp.on.ca/pdf/toy_flyer.pdf

Well I hope your all having a wonderful week so far
-Liz

Nicholas

Well turns out Nicholas's head ache are just going to be a normal part of his CP, after 14hrs in the emerg and one CT scan with dye later we were discharged with a "there is nothing that can be done, the attacks are too short so if you give him anything for it by the time it kicks in they will be gone already, the only thing you can really do is comfort him through them" HOW DEPRESSING? poor guy has been through a lot of pain lately between his legs and his head aches, Monday nights (3am) attack was the longest so far it lasted until 4:18am =( it really sucked the life out of him too he has had no energy at all since it. This scan was depressing though because with the dye the could actually see damage and even knowing he has some having a doctor come in and say "we can clearly see his brain damage but nothing worrisome that would be causing the pains" is rather depressing. It's the first time we've been told that they can see it =( I cried like a baby when we got home "brain damage" is not what I want to hear when it comes to my little guy...Cerebral Palsy was hard enough!

and hey we got some interesting letters from Gerber Life too, because Nicholas's legs don't work right he was denied and so was Matthew who is PERFECTLY HEALTHY! I knew Joey would be denied but he has diabetes and it's almost impossible to get him insurance lol not that I really wanted it but I did want the freebie they were giving away with their quotes. Turns out though if they deny you they don't give you one hahaha JERKS! I wrote about it on my blog if anyone wants to read it, though I did write about his cognitive abilities in my rant which might make some of you a tad upset since he is advanced in them so only read it if you want. (click his name above)

-Liz

Emma and her tricycle...

Emma is doing very well with her tricycle this summer. If she is good, she can ride until her heart is content. I wanted to practice adding a photo, so here is one.

Oh Hannah

So if its not one thing it's another. Hannah likes to drop her sodium when she is sick with no real reason. So her Dr is out of town right now and she has to get sick..... after seeing a dumb Dr and daily lab draws she was put in the PICU on friday for low sodium. Her sodium dropped to a bad 122 normal is135 and higher . I was told if it gets in the teens she would start having seizures . The only good news here is we might have a reason now. The Dr things she has both Cerebral salt wasting syndrome and SIADH . now she is still on daily lab draws tell her sodium stays up and next time she gets sick we have to watch her I/O and start her on salt and drop her intake my half.
Trina

Botox and Serial Casting next Friday!

Andres has another botox appointment next Friday because his legs have become tight again. The good thing is that this time his first serial cast will be placed the same day that he has the botox done. I'm excited because I love what the botox did last time; (with the exception of that idiot doctor taking off his casts WAY too early) but at the same time I'm dreading it because he did horrible when he came out of the anaesthesia. Well that, and it made bathing him a little challenging. I hope this all goes well~If it's anything like last time, he'll be trying to be more independent within the next month. I'll keep you posted of how everything goes after the surgery! :-D

-Angelica

Someone remind me there are good days in Holland too...

You know I could explain the whole week and everything, but it doesn't matter. I just need to know there are good days too. I tried to read "success" stories and it didn't help. I tried to remember he's with me for a reason. It doesn't matter. It's simply not what I signed up for and I'm pissed. I want that doctor to pay. Not because I want money but I want him to pay for what he's done to us. To me. To my son. I'm just angry and upset and I want this to all be not true. I know a lot of my posts are like this lately but this week was exceptional and we've been in the hospital and he regressed in his motion and I'm getting hosed at work and I just haven't been able to post much except this. Somebody just tell me it will be okay and there will be good days.
Kristi & Hunter
(cross posted at the "other" places too... sorry... I just need someone's support right now)

Going Back to Baby Food

Mia has hardly eaten this past month. She refuses most foods, including sweets (sometimes I will try and give her something sweet just to see if she will eat it). She does drink about 32 ounces of pediasure a day. She can eat.As a baby she ate pretty well but she didn't gain a lot of weight. She would eat a couple of jars of baby food at one time without a problem. Over the past month she just won't eat. She is so skinny already that I worry about her not getting enough calories. She has therapy 7 times a week so she needs the energy!
Yesterday I broke down and bough baby food. I know baby food is pretty low in calories, but I am trying to get some balance in her meals (veggies, meat, fruit). She will eat yogurt and sometimes will eat spoonfuls of peanut butter. I am not sure why she is reverting back to only pureed foods. I am in the process of switching her pediatrician so I have yet to talk to her ped about this. I did mention it to the OT, but she didn't have a lot to offer on this topic. Mia has almost all of her teeth. When the food aversion first started I blammed it on her new molars that were coming in, but they are in now.
I don't think she has any swallowing issues as she used to eat. Am I doing her an injustice by going back to baby food?

How much therapy is TOO much?

I am struggling with the amount of therapy that Sammy is getting. At first I wanted more, now we have too much, I just was wondering how you ladies have found a balance between everything. I think at first I was like ok this is my number one priority. Now, I am feeling like our day centers around when Sammy has therapy. If I only had him I would feel like it was great. But I have four other kids that deserve my time and attention too. Just such a balancing act!!!! Sammy has therapy five days a week. One day they come here for infant development, and the other four days we go to the hospital for his therapy. I think in the fall I am going to do every other week with infant development and one day a week at the hospital, but he is doing so well as of late, I wonder if that is because of all this extra therapy!!! It is just so hard!

Arm Splints: Good or Bad???

Emma's arms are the most spastic part of her body, above her legs and all else. She has trouble with bearing weight on them, reaching, crawling on hands and knees. She tends to keep the flexed toward herself, even though we do ROM and exercise on them daily. So, this limits her in many ways. She cannot feed herself or get herself to her walker from the floor. It literally makes her completely dependent in spite of all her accomplishments. We are still working on getting onto her hands and knees and bearing weigh on her arms. She likes to sit on her heels, so it works out okay. She isn't a huge W sitter, but a big heel sitter. When trying to help her, she will pull her arms back up. With this said, could arm splints or immobilizers help? Are there any good ones with velcro that are easy to get on?? I have tried the Uria splints that inflate, and they are a pain in the butt. Are there any suggestion that you can give me to help get some strength into her arms? This is important for her to get more independence. Thanks!

Emma Eats at Friday's

Emma at spaghetti off the kid's menu at Friday's over the weekend. This was the first time that she has ever done this. For the past 4 years I have always had to puree her food, so we don't eat out that much. I usually have to take her food into the restaurant in a Thermos. She has always had a bunch of oral motor issues!! This weekend all I did was chop it up with a fork and feed her. She was so proud of herself, and it felt great to be like a normal family for a change. Now, if we can get her arms working better, maybe she can feed herself one of these days!!! That will be a bragging post that I can't wait to share!!

St Louis Bound

We are headed back to the CP Center in 2 weeks. Since Logen's EEG came back positive with seizures, the neuro wants to see him. As of now, we've been given liquid valium and were told to to give it(in a suppository form) and call 911 if any seizure occuring lasted 5 minutes or longer.

Not sure if the laptop will make the trip with us, but i'll certainly be updating when we get home. We are suppose to be meeting with a SLP & an OT about the CONSTANT drooling. It's becoming an issue. It STINKS. He's almost 5 and I am afraid his class mates will notice the funky odor. That, and it's just not normal for a 5 y/o to drool like this. He has enough issues as it is. We've discussed botox, it's considered 'cosmetic' if done in the face. Insurance won't cover it- if he qualified for it in the arms, hands, legs, etc then they could use the remaining in his face and not bill it. However, he doesn't.

Thats whats up with us.

hello!!!

lol finally got my invite and I am so glad I can finally post here!!!

Nicholas is doing pretty good but the muscles in his legs are starting to get really tight and sore, this morning when he woke up he couldn't even bend his legs they were locked up so bad. I am still waiting to get the appointment to get his legs recasted for braces but no one has phoned me back, I swear as soon as I find out when their next clinic date is I'm just going to show up and pretend they gave me an appointment lmao think it'll work??? It really sucks because they only work one day a month and his other clinic hasn't even phoned me back yet so I can't even get an appointment there! If his school was open during the summer I know that they would have had them by now since their person comes in every week! Geeezzzzzz out of three places we can get braces we haven't been able to get into a single one of them, pathetic isn't it? He's spent all day in his Kid Kart or stroller because he's been too sore to move, it's really sad to see, he wanted in his walker so badly but once in it he couldn't even move it an inch! I'm going to try to heat gun his old ones to see if I can open the one up a bit so his foot will fit in, even if it doesn't work at least it was worth trying IMHO anyway.

Hope your all having a great week so far!

-Liz

BBC meetup??

Hey everybody that's here... not sure who yet... I can't post on the OBBC still, so this is my lifeline to you guys...

Sheila and I were wondering who was still up to meeting up at the end of July?? We're looking at a beach meet up maybe, or elsewhere if that works for others.... maybe an overnight with or without kids??

Let us know!!

Ellen :)

Trivia

Don't forget we've hit July and so we start over on the trivia game. Sorry so late in the day!

http://www.funtrivia.com/private/main.cfm?tid=69015

Side Pictures

Hey guys.... just wanted to let you know -> I have several pictures in my inbox waiting to be made into the side pictures. Each one takes me around 30 minutes (some longer, I had major issues with Hannah's picture and worked on it for like 2 hours!). I promise if you have emailed me a picture, I'll make you one soon! Might take me a bit to complete them all :)


BTW-> Logen had a seizure, not a new one (for the ones who know) but I posted about the EEG results on my blog. You can click the name of this post or Logen's picture to the right to get there.

my baby graduated.......

My oldest "baby" graduated from 5th grade on Tuesday. So bittersweet! It seems like yesterday that he was starting Kindergarten! :(

They grow up WAY too fast, people!! Enjoy the little ones while they are little! :)

Map Is UP!

I added the map (Thanks for the idea Melinda!) to the bottom of our blog- don't forget to add where you are. If you have gotten an invite through email, you can start posting here. If you have not, it's b/c I have not gotten your email addy to add you. Also, I have only gotten a few pictures from Carrie, Trina, and Kara- if you'd like your kiddos (and your) pic on the sides of the blog--- please email those to me! jklduncan@yahoo.com
Hugs~ Jessica

Would you all like to include a list of our personal blogs on here? When you create a post, you have the option of typing in your link- so you are 'clickable' that way as well. Also, on the side pictures, you will notice Logen's picture is 'clickable'. I can make the others clickable if you want to include blog links in your email.

Heaven's Very Special Child

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progess may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thought may seem quite far away,
In many ways he won't adapt,
And he'll be know as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for You.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

Welcome!

Hey Guys!!! What do you think so far?