Missing in Action

Christmas has been nuts this year. Not a moment to savor the season for us. I got a part time seasonal job that turned into full time seasonal that turned into thanks for bailing us out we don't want you any more.

In the midst of that My grandpa passed and a trip to Orangeville Utah we went. It was a wonderful services and we have photos on my blog. We are glad to have that part over with. Christmas was good otherwise.

Now on the real life.... Hubby got a great job offer. Will help us out tremendously but I don't want to see him sad. I am hoping it is just temporary and will help us just get back on our feet. And get us a vacation together....

Tyler is doing well. We did phenol injections ( more about that later) and he is doing FABULOUS!

If You are interested...

My friend is doing this wonderful gift for a family who might be interested...


I am giving away a free shoot to a family/person who really needs it. It will be a regular shoot, plus 20 photos at high resolution on a CD. This will be going to a family in need and who you think deserves it above anyone else. If you have a candidate for this shoot email me (littlemischiefsstudios@yahoo.com) why you think that they deserve this shoot and on January 17 2010 I will be announcing the winner. This is for anyone in the entire state of Utah. Please try to think about someone who may really need this.

littlemischiefsstudios.com
littlemislchiefsstudios.blogspot.com

Fight for Preemies

November 17th is prematurity awareness day. For the month of November we have been blogging our journey with prematurity and blogging for awareness. The theme of the March of Dimes this year is one that I can't help but be passionate about. This year they are using the phrase "Fight, because Babies shouldn't have to!"

I fight because Tyler and millions of other babies shouldn't have to.

Prematurity is the leading cause of Death of American newborns. Those who do survive often have life long challenges.

They fight everyday.

Tyler was born at 25 weeks and 3 days into my pregnancy.

94 days before he was suppose to. That means he fought for 94 days to live so that we could take him home. But the fighting hasn't stopped since.

He fought through a Patent Ductus Arteriosis, Grade 3 and 4 brain bleeds, Chronic lung disease, Retinopathy of prematurity, PVL, Cerebral palsy, hydrocephalus and craniosynostosis. He has been shunted, endured countless hours of therapy, bracing, brain surgeries, heart surgery, Skull reconstructions and low vision. All because he has had to fight. All because he came 94 days before he was suppose to.

I fight because every day we struggle with food, sensory processing, cerebral palsy, high muscle tone, no words. Every day I fight to help him lead a life that is less challenging. Everyday I try to do one thing that would make his world easier.

Everyday I try to tell our story so that ONE mom never has to feel the guilt I feel for not making it those 94 MORE days.


I fight so no mother has to wonder what she did to hurt her baby.

I fight so no mother has to question whether support should be withheld.
I fight to get accommodations made so that Tyler can be a participant in EVERY activity!

I fight because Tyler can't.

He has his own battle to fight. He is a hero. He is fighting every day. He attends those therapies that we take him to, he listens day in and day out at the boring letters and words he hears trying to get him to speak. He fights everyday to put one foot in front of the other with out falling, all because those 94 days he came to early left him with Cerebral Palsy. Everyday he fights.

I fight to help others understand that we need accommodations made so he can enjoy life to the fullest. I fight to find ways to help his processing disorder be a happy place instead of a lonely one.

I fight because of EVERY MEDICAL ADVANCE and ever MODERN DAY MIRACLES we can't figure out a way to keep a women pregnant LONG enough to save these babies from disability and death.

We have put a man on the moon for Pete' sake. We have found water on the moon. We are transplanting organs into children and adults, yet we STILL can't find a way for a woman to give her child a FULL 40 weeks of pregnancy to SAVE HER CHILD from a life of disability.

I fight because I love a preemie.

I fight because he is mine. And he deserved nine months. And I keep fighting because he deserves the best.



I fight because I want my next child to have NINE MONTHS

I fight because I am raising a miracle.

I fight, so he doesn't have to!


We fight so THEY don't have to.



Please, support us in your blogging and face book status and twitter messages. Fight4preemie so they don't have to! We would especially like to see our family out there showing their support for the Miracle that happened in their life on Sept.21st and who every single day shows courage to be the best Tyler he can be!

FIGHT....... Because they can't

* this was a repost from my blog, I haven't been around much but have read. We have a few things coming up that I can't wait to share and hope to get some input from the lovely ladies we have on here! Thanks for reading, sorry if the photos are to big!*

untitled

My life this year has been in a constant state of chaos in stasis and right now, I see no end to it.

I just met with my school's SLP, whom I practically had to beg to evaluate my little girl. Finally, a full 45+ days after the fact, today I was informed that her performance is at the 1st percentile.

At my IEP ammendment meeting, my 2nd grade teacher was in attendance as was the assistant principal; both were present at the initial IEP meeting back in September. You would not believe how quickly one's hackles can be raised upon hearing the insensitive words of an uninformed AP.

For instance, during our conversation, these school professionals said things like "oh well sounds like our school is not a good match for your child"... and "maybe we should write a safety goal.. in case you change schools or something".. and at the beginning of the school year, my school virtually told me that a 1:1 aide was not an option for my child. And yet today, the AP told me that without medical documentation or IQ testing-- or the fact that I have chosen not to share this information with them- that they cannot provide additional services. I responded saying that I would gladly share my recent psychological testing if they would provide an aide, but that I had already submitted copies of testing that documented a need for an aide. I also bluntly told them that I saw no reason they needed to have access to IQ tests if they weren't even going to try to meet the needs of my child.

You would not believe how irritated I was to watch an SLP, AP, and regular teacher talk themselves in circles. Interestingly and totally off topic, my SLP informed me that she always wanted to work in the NICU. And yet when we started talking about my daughter and her syndrome, her words were "yeah and she has Velo- car... whatever its called syndrome." I was a bit put off by her insensitivity.

But. No matter. I guess I will start making plans to change schools. Whats a littlemor chaos?

SOS

It has been recomended that J starts wearing a helmet! I am such a mess about it. He needs it in hopes to prevent all the bruising that is occuring due to his head banging. Does anyone know where I could find one that would fit a baby. He has such a small head a normal toddler helmet is just too big...let me know what you know. Thanks Ladies..

Short and sweet

I am really tired of being house bound!
There was an excellent program on Epilepsy featured on 60 minutes; a weekly news program in the US.See link!

Autism Poem

I found this poem today and posted it on my personal blog... but I thought you guys would enjoy it too.

If you are interested... check out my blog at:

www.christensenchaos.blogspot.com

QUESTION...

The fact that no one has reponded to Melissa post worries me. Where is everyone? I hope doing well and staying out of hospitals! I hope all are enjoying the beautiful fall colors that are surrounding, and getting the chance to crunch some leaves.

I come to you with a serious issue that has me worried. MyJonah has a chronic lung disaes called non CF-Bronchiectasis. If you are familiar with CF its the lung part of the disease that Jonah has. Anyways, on Saturday Jonah was sitting at his high chair and I was sitting kiddy corner at the kitchen table. I noticed he stopped drumming with his rattle and I looked up at him and saw his eyes roll to the back of his head. Then he looked normal again. Since Sat this has happened another 2 time. I didn't think much of it because he has been head banging so much I thought maybe well, I dont know what I thought. Last night I was serving dinner and my husband asked why J was doing that and I dropped the fork I was holding to run to see if J was still doing it. I never mentioned it to my husband before that because I thought it wasnt a big deal. But once my husband saw it , it validated things I was thinking and I imedietly called the home health nurse. SHe came by this morning and of course Jonah did not do it for her, but she said that it is deffinately neurilogical. She thinks he is having seizures. Im kinda freeked! Both of his drs have called to schedual an EEG, now we are waiting to hear back from that department. Has any of your kids ever had a seizure like this, where they just go into a daze then the eyes roll back then they come back too? He does not shake or anything like that. I am so worried. Please let me know if any of this might be familiar to you. I really hope he is not seizing now. How much more can one mom take?

Are we all this busy??

I haven't posted on here in a really long time. It has been a wild and crazy few months for us. I am wondering how many of you are feeling like that too?

My family is doing good. Josh has been keeping me on my toes. We have several appointments going on in addition to all his therapy. Then you add in his G-tube placement at the beginning of summer, with all the complications we had.... and here we are 4 months later! Our most concerning problem right now is Josh's lack of sleep. We saw the great Dr. Pfeffer a couple weeks ago and are waiting for a sleep study to be done. I am very tired since he sleeps about 1-2 hour stretches.... it's awful. He moans, whines, talks.... ect. So I hope to get to the bottom of that soon.

I really hope all is well with all of you! I have some of you ladies' personal blogs that I follow, so I know what some of you have been up to. But not everyone. I really hope that you are doing well.

answers about cord blood.

Yesterday we visited the neurosciences clinic at Primary Children's. Our regular Neurologist at Primary's referred us there when we asked her how to find out current and accurate information on the use of umbilical cord blood in treating cerebral palsy.
We told them what we were coming for when we made the appointment, but apparently the Doc didn't get the memo. He was a real nice guy, and took his time in asking all the questions about MK's history, carefully looking up lab reports, and test results on the computer. But he looked like a deer in the headlights when we told him why we'd come. He said that he was just a resident working under Dr. So and So, and that he would run it by him. We waited in the room after that probably another half and hour or so and joked that they were probably 'googling' about cord blood so they'd have something to say to us. The sad thing is, I think we were right. Both doctors came back and talked in circles just restating MK's condition to us and telling us what we already told them, that it seems to be more of an issue of some sort of brain damage rather than a genetic condition....yada yada yada. They really had nothing to say, nor seemed to know anything about cord blood. They gave us a packet they printed out from a web site. (I had to giggle inside myself.)
I got better information about it last week when MK had a check up from another one of her doctors at primary's. I casually mentioned it while we were there. That doctor had just returned from a conference on the subject. She said that she has had numerous patients (mostly with spinal cord injuries rather than cp) who have been interested in cord blood, and many who have even tried to use it. According to her experience, and the information she'd learned at the conference - There is definitely potential there. But the technology just isn't totally ready yet. She said she felt that it would be worth while to harvest and store the blood, but that it's difficult to even put a time frame on how long we might have to hold on to it before the technology is ready. Maybe 10-20 years, who knows?! But she also cautioned - whatever you do - don't go to China or Mexico. She said she'd had patients who had done that, and while she didn't elaborate, she strongly and clearly implied that their efforts were a waste.
I think at this point, we are leaning towards harvesting and storing, but not totally sold yet. We'll be looking into the different companies that do it to check on prices and such. I'll keep you all posted on that.
A big thank you to Ann who left a comment with all the links to blogs and such about it. I've been particularly interested in following Cady's blog, who recieved cord blood for her CP as part of a study done at Duke University. I'll keep watching her progress. Thank you!
In the meantime, it's good to get some updates from some of you. I'm glad we all seem to be hanging in there. Good Luck with Halloween all!

Been Awhile...

Hey Ladies. Looks like we're all resurfacing after a long summer. It's nice to hear from you again! Since I last posted my family has relocated to Atlanta, gotten settled, and started school. Overall we've had great experiences here and can't complain. Unfortunately the Early Intervention program here in GA is lacking. We had a discussion about this I think back in June. R is only allowed one therapist at a time, they evaluate her and decide her "primary need" and that is the therapy we receive. We can request for supplemental therapy if she qualifies for other services, but it will all need to be paid out of pocket and even then they will only provide it once a month.

Right now R's 'primary need' is Physical Therapy and her therapy will begin next Wednesday (yes, it's taken over 3 months to get services started here). Since June and until her reassessment in January I am doing all her Speech Therapy. I'm grateful J had such extensive therapy because I feel (somewhat) confident, but I won't lie... I'm completely overwhelmed and scared I'm going to miss something. I'm also punting as the Occupational Therapist and Dietician... and nurse. Totally different and somewhat scary not feeling like you have a legion of people looking out for you and your child. I'm sure our PT will be great, but, I'm sure you understand the panic that comes with making sure your child is getting everything they need.

Remember back in the spring when I said J "finally caught up?" Well, yaah, she did, and then she entered 1st grade. Ha. It's proving to be much harder on my cute J this year. Her brain damage affected the processing ability, which we already knew, but it's rearing it's ugly head as the concepts are getting harder and harder (math..reading...). They have her on the "Rescue Intervention Team" at school. She meets with a reading tutor once a day, has after school tutoring with her teacher once a week, and I do 45-60 minutes of remedial work with her at home each night. It's exhausting but I'm hoping it will help! The RIT team will be watching her for another 4-6 weeks if there isn't any progression, even with the increase in help, they will do more language development tests to see if they can nail exactly what part of the processing is tripping her up (dyslexia, auditory processing disorder, dyscalculia, etc)...and then write up a specific IEP. I feel confident and grateful for the charter school we chose to put J in. Her Elementary school only handles K-3 and they have an Early Intervention Specialist for each grade specifically. I'm working closely with the teacher in hopes to reinforce what she's learning in class.

Sooo things here are going well, just a little overwhelming. But what part of that is new with us and our cute kids huh? I guess my main concern about J -and maybe y'all can give me some suggestions- she's getting to the age where you KNOW you're not doing the same thing as your peers in your class. It takes her twice as long to do an assignment, she's singled out for tutoring, etc. I don't want her confidence to be affected. I can't control the way other kids react or treat her, but I can help her channel her confidence. Any thoughts?

I'm Still Here

Just so ya know. I haven't gone and done anything crazy. Ok, yes I have. I signed up to be the soccer coach for Marshall's team. I also reluctantly agreed to take Marshall to Wasatch Mental Health again. They have NEVER been helpful. They have only said Marshall has sensory problems, that's all, and then left us with no idea as to what we should do to get through this mess! Thanks a lot guys....

I also let myself get addicted to a game on Facebook and spent every spare second I could, playing that. I think it was a way to push the stress away, but it was not good. I finally was able to realize that what I was doing was not right and I stopped. I deleted the game and blocked Facebook too. So, if you normally look for me on there, sorry but I'm MIA until I feel I have control over my obsessive behavior. Maybe I will never feel like I can go back to Facebook. Who knows. So, for now, read about the sleep doctor update, Marshall in soccer, a silly song parody I made up, and soon I will update about school. But for now...the link- http://buckleinbunch.blogspot.com/

Sorry I don't have more to say. I need to get a shopping list made before I get Marshall from school. I love 3 hrs of time to myself. Ahhhh...it's so nice!

Radio Flyer

* I posted this same post over at my blog prematuritywithlove.blogspot.com*
Birthdays didn't mean much to me until I had a baby. Then the only thing important to me is making Tyler happy. With that in mind every time his birthday rolls around and me and Dallas get to give him gifts I try so hard to find something that invokes a smile and HOURS of fun and joy.

Last year my sweet little man got a basketball hoop and a chair. That chair is the grossest most loved piece of furniture we own! This year I went in search of the perfect "chair" to give him.

I found the perfect cake for the perfect party but couldn't think of the perfect gift. We went to the toy store and once again found a perfect "gift" but it wasn't "the chair."

I wanted to get Ty a bike but knew that his Cerebral palsy wouldn't allow him to hold on and still ride at the same time. I researched and researched and found a good alternative at the toy store.

A Radio Flyer

Dallas put it together tonight and some little boy LOVED it.

He really really liked being able to ride the bike.

Though we need to make some adaptations to the pedals and it will take a lot to get him to ride it on his own he was such a big kid and he wouldn't stop smiling.

He was pointing up the street and telling his dad he "wanted to go there PLEASE."

The mom had tears in her eyes and she watched him go. Flying up the street as fast as our feet would take him. As we would slow down and turn around he couldn't get his hands up fast enough to sign "more please."
The simple joys of life. The simple joys a 3 wheeled radio flyer will bring.

I have an announcement to make. Not that it will be as big a surprise to you my cyber-friends as it was to my in-laws on Monday night, but I am now 26 weeks pregnant.
My husband and I have been playing a game. We thought it would be funny not to tell anyone unless they flat out asked us "Are you pregnant?" I guess we're cruel. We thought it would be fun to watch people squirm. Let's face it - you've either got to be really brave or really rude to ask a woman if she's pregnant. So, that's what we've been doing. Slowly a few people have caught on, but my in-laws have not known. Nearly 7 months into this thing, I'm showing, we've been dropping hints like crazy and they hadn't caught on. So we finally gave in and told them.

Of course I can confide to this group that beneath the surface there have been a lot of other reasons to keep things on the down low. The intense fear I have for one thing. I just haven't wanted to have to hash over things and answer questions over and over again about all the possible problems we might have. People are well-meaning. I just haven't wanted to deal with all that. Including all those people who think we're crazy to be having another child anyway.

It's been an emotional roller-coaster for me. Sometimes scared and worried. Sometimes just excited for our new little girl to come. We've had a few scares along the way, but everything has been fine and is fine now. But I'm also at the point where things have happened in my past pregnancies, (preterm labor resulting in losing a baby, other issues causing pre-term emergency c-section, miscarriage, etc.) which makes me a little nervous. I can't help but be a little paranoid and overly cautious.
Today was 'walk your kid to school day' and I drove anyway. I feel a little guilty about that. But it is painful for me to walk, and I'm too scared to 'push' anything.....I'm sure many of you, if not all of you can relate.

I wanted to ask you all about something that was brought up to us a few months ago. Someone mentioned the umbilical cord blood and told us that there have been cases where cord blood has 'cured' cerebral palsy. Have any of you heard anything, or do you know anything about using cord blood? I've done a lot of research about it on the internet. There actually are stories about CP 'going away' after treatment. But pretty much everything I've found on the subject has been produced by the blood banking companies -- none of it negative. It just seems too good to be true -or as easy as they make it sound. There's got to be more to it. We've got an appointment with a neurologist at Primary Children's in a couple weeks to find out about it. I'm trying to build a good detailed list of questions to ask. I have no idea yet if it's something I want to try or not. But I really want to learn more about it. From what I can tell, it has no risk, for the new baby. If it could help MK even just improve the slightest bit, I feel like maybe I should give it a try. On the other hand, it seems so new. Is it safe? What are the risks anyway? What is the procedure? ya know? Do any of you know anything, or do you have any good questions for me to add to my list?

Thanks for listening. I'll appreciate any input you can give.

Need some equipment?

Hey everybody- I've got a pair of walking wings and a set of pedi-wraps that I'm getting rid of. I'd send them to the D.I, but it's likely that they won't know what they are, or what to do with them. If you're interested, send me an e-mail and you can have them. I've included pictures of both below.
I know the walking wings have been posted about before. They simply strap around the middle of your child and have 'handles' for you to hold onto to help keep your little one upright. It's a one size fits all item. Ours has been very gently used. They look and feel brand new.


Pedi-wraps go around the legs. They are made of fabric but have metal or something inside to make them stiff. They act as a brace to help weak little legs stay up and stay straight. Ours are purple. They've been used once or twice in therapy and are otherwise brand new. I can't see a size on them, but I think they must be about the smallest size as they are about 12 inches (maybe a tad bit longer) in length. M.K. used them while trying to strengthen her standing muscles. They kept her legs from buckling under her.

Hey Girls. My HOLY COW post@

Communication is kind of a problem in this house. I think there are so many times that there are sometimes when the frustration of our lack of communication is so non existent that I can't help but feel some what sorry for myself. And it isn't me that can't communicate!

A glimpse into what I mean before I get to the holy cow part: Yesterday Tyler got up at the butt crack of dawn. Like 3 am. Not kidding. He was happy, mom um no! He had PT and OT yesterday as well which is a total throw of his schedule. He is not that set on schedules where he freaks. In fact I am not even sure he knew it was not the right day. What threw him off was the new contraptions he is to wear. He only had to have them on an hour. While getting on his shoes he was crying and crying and crying. His dad got him calm and the trip to PT was not as bad as I had anticipated. He was fine. He wouldn't let me leave him at PT which is abnormal but otherwise he was fine. He walked for Rachel and played his game for Jackie. He was allowed to take his shoes/braces off on the way home.

He played all day with Corine ( his respite lady) and we knew hew as exhausted. He fell asleep on our bed way late. We woke him up at 6 pm and bed time is at 8. He is a bear when he wakes up then compound his lack of verbal skills and you can only imagine the frustration he has. Dallas and I together couldn't figure out what he wanted. Finally we got him to sign SOMETHING. He wanted water, pool and something else. But he signs PULL not POOL. But it means the same thing to his ears.

So needless to say, communication is huge.

His speech is getting cut in Utah and he has been out of speech here for about a month. It was so hard to get use to the idea that he won't have it. He needs to talk. He needs the therapy.

While we were waiting to get our braces I thought I would go through the " Can you say this game?" We have been super working on just the basic sounds like Ba, Da, ta.. you know the stuff your 9 month old says.

He will say Ma or mom fine, and we FINALLY got him to say Ba. It was huge. We made a huge deal out of it. We let him be the praise junkie he is and then we moved on to something new. Those that know him know he won't say Da or dad at all unless it is by sign. Sign is fine. It is nice to see he KNOWS Dallas. But hearing it is way better.

SO, in the middle of a nasty circle K bathroom ( I really really had to go and Bret was still closed) he wanted to touch the floor. I said "ew no. Its Dirty! Can you say Da da Dirty?" SERIOUSLY we do this ALL day. When he wants something we say can you say "Fo fo food." I am sure people think we are NUTS. He looked at me and smiled and said Da. I gave him the praise junkie YAY and asked again. And again, and again. I finally called Dallas but he didn't answer and was super excited.

I was afraid he would pull a Tyler and NEVER say it again. But sure enough when we got home he said Da. When I would ask him to say Dad he would say Da and sign dad at the same time. It was making his dad BEAM from ear to ear.

So HOLY freaking cow! He has a new sound.

Signs and sounds he is currently making: A glorious LIST for YOU! ( the big words IE computer are all signs or approximations of signs)
Da
Ba
who ( like owl talk who who!)
T sound
S sound
Computer ( Dallas LOVES this one)
Dad
mom
Elephant
tiger
lion
monkey
pull
pool
water
all done
more
food
yummy( this one is just a sound he makes)

I think that is it for now. As you can see it is not extensive but it is a START and we love that he is progressing no matter what the speed!

* This was posted at my blog so you get a repeat*

BUT..... on a happy note. We are moving back to Utah. That's right ONE WEEK till we touch down in Utah county! Not sure how my hubby will do in Utah county but I am so excited. We have a new preschool that is just opening and hopefully we can get it all started and set up quickly!

It's been a long time!

I haven't posted on here in such a long time. I thought summer would give me more time to blog and keep up with the cyber world, but with all three boys home... it has been nuts!

My little Josh is doing pretty good right now. He had his PEG tube placed on May 29th and has had some small problems with it, mainly with granulation. He then had the conversion done to a mini-button on July 29th. He came home a lot more sore than I thought he should and within a couple days had granulation started again. We got that under control then the skin started to do this weird thing and bleed and the hole got bigger... it was a nightmare. He was hurting alot and screamed through all feedings and dressing changes. After taking him into our pediatrician and not really getting anywhere, I demanded an appt with someone down at Primary Children's. Our GI doctor was out of town at this point... that was our problem. So we got another doc to agree to see him in between surgeries. He was diagnosed with a staph infection at that point. The doc looked and said he did not have granulation at that point. We got started on antibiotics and within 24 hours the granulation came back. UUUGGHH!!! It has been so frustrating. The staph infection is looking almost gone so we are making progress, but it has been rough. He has spent many (too many to count) sleepless nights. At least his weight gain had been what they wanted to see with the G-tube in.

But on the more positive side, Josh mastered the stairs!! We have been working on the stairs with his physical therapist since January! He could go up them 3 months ago, but he just could not get the down part. It is all part of his dyspraxia. But it all just clicked last week and he went up and down all by himself. We were able to remove the gate for our stairs and he can now just go up and down when he wants instead of waiting for me to help him. It's been an exciting thing for us. I knew the mom's on here would understand how exciting this is. I have told a couple people who don't know Josh very well and they look at me like I am crazy for being so happy he can go up and down. But we partied here for him!!

I hope all is well with all of you mom's and you are getting ready for another school year to begin. It's been a nice summer, but I am ready for school. I can't provide the same structure my autistic son needs at home, and we have had so much together time this summer.... we need a break! Good luck with the challenges I know you all face this fall and I am thinking of all of you!

What do you think? Inappropriate or not?

I have to bounce something off of you all. I'm having hormonal issues, so I can't tell if things that are bugging me really should be bugging me or not. Know what I mean? There's a particular issue that I think is really stupid. But maybe it's just me. Maybe I'm out of line, and should have more of a heart. Let me know what you think. I'll try to leave out any personal feelings as those may be clouding my judgement as well.

We've had M.K. in an animal therapy program for the past several months. It's a non-profit, volunteer run organization. When we signed up we were told it would cost x amount of money. We were encouraged to find a community sponsor to pay the fee, just to get the word out about the program and make people aware.
Last week, one of the volunteer therapists got a hold of the parent e-mail list. I don't believe the people in charge know about it. She sent an e-mail to all of us parents. She started out with the line "I want to address something that has been bothering me about all of you." Then continued to tell us about how the person in charge has sacrificed so much to run this program - mortgaged their house twice and is $30k in debt because of it. And this therapist further believes that because of this, we should all be paying more because the payment asked for isn't covering the costs.

I think much of my reaction has to do with the way it was presented. The first line put me on the defense immediately. But I also kind of feel like when I pay what is asked and take my child to therapy every week, that I shouldn't be given a guilt trip for doing that and be asked to pay more money because of someone else's a)lack of financial foresight or b)desire to keep the costs low for us families. I don't want to feel guilty about taking her to therapy. ya know? I have enough to deal with. Am I out of line here? Should I be feeling so sad for the one in charge and trying to scrape up extra money that I don't have, out of guilt?
I think it's kind of inappropriate for the therapist to take things into her own hands and first of all speak for the program with out the knowledge of the director, or to talk to us parents like she did. It seems to me that a director who has been running this program for several years would know the costs involved, and probably has her reasons for doing things the way she does-whether it puts her in debt or not. It also seems out of line to come back to your clients after they have paid, and ask for more money. I wonder if the therapist understands the costs involved with having a special needs child, or if she's donated any money to the program herself......

I don't know. I'm always grateful for the therapy we receive and for the therapists who give it. It's always so nice to have someone take an interest in helping your child. I want to keep being blissfully ignorantly grateful now, but I'm bothered by this. and I don't want to do the therapy again next year. I'm curious to hear your opinions though.

Second DAFO...what do you think?

Okay, so we went to JT's Physical Therapist's today.  I have been kind of worried about how his gait has changed the last few months.  His left foot and leg have been the problem side in the past and he already has a DAFO on that side.  Lately he has been walking on his toes on his right side.  It looks like he is trying to make it easier to just swing his left leg up without catching his toes.  I have heard of "tippy-toe" walking and I knew it was a reason to get DAFOs.  So I guess I wasn't completely surprised when it was suggested we get one for his right leg as well.

I hate to give him something else you know?  I really hate the idea of putting a DAFO on his leg that doesn't seem to be affected by his CP.  But I know he won't change his way of walking without some sort of help.  The other option was to get sturdy hiking boots but it is already so hard getting shoes that will fit both feet (the left over the DAFO and the right foot is so skinny even in smaller sizes shoes that are big enough for the left rarely stay on the right)

It was hard to see him walk in the right DAFO she had laying around. Minutes before he was running and showing off, but with it on he was unsure and unsteady, asking for help often...but on the other hand I have never seen him walk so normally, slow, unsteady but it looked RIGHT.  I don't know how to explain it.

I feel like getting the right side would help him.  But I guess it is just saddening.  Does anyone have a suggestion?  Anyone had something like this happen?  Is there another option I am not seeing?  

I hope all of that made sense.  I have had a long day.

Hey Everybody,

I just got this e-mail from Jamie. (The Mom whose boy was abused at school) I'm sorry I'm slow in posting it. I just got back into town---She is going to a School Board meeting for Weber County TONIGHT at 6:00p.m. Again, sorry for the short notice. That's my bad. If any of you are interested and able to go, I'm sure she'd appreciate your support. Here is the rest of the e-mail she sent. Valuable information to know.

I would like to share some important information if you could pass it on please. Please let the Mom's know how important it is to be informed on your rights and that of you child. Not just to the extent the school gives you dig deeper! just an FYI they are hiding behind the FERPA laws in our case, (and stating that is why they could not say anything, and why the aide was released) BUT... My son has medical reasons why I should have been told everything according to this!

Personal Knowledge or Observation

FERPA does not prohibit a school official from disclosing information about a student if the information is obtained through the school official's personal knowledge or observation, and not from the student's education records. For example, if a teacher overhears a student making threatening remarks to other students, FERPA does not protect that information, and the teacher may disclose what he or she overheard to appropriate authorities.

The "Health or Safety" Exception – (34 CFR 99.36)

The Department has made three important liberalizations to the section of FERPA which governs how institutions can make use of the "health or safety" exception to FERPA.

No longer will the health or safety exception be "strictly construed" [the old section 99.36(c)]. Instead, section (c) now provides the following three types of useful flexibility:

First, in making a determination as to whether to invoke the "health or safety" exception, institutions may take into account the "totality of the circumstances" pertaining to the safety or health of a student or other individuals.

Second, if the institution determines that there is an "articulable and significant threat" to the health or safety of a student "or any other individuals," it may disclose information from education records "to any person whose knowledge of the situation is necessary to protect" the health of safety of the student or other individuals.

Third, "If, based on the information available at the time of the determination, there is a rational basis for the determination, the Department will not substitute its judgment for that of the educational agency or institution in evaluating the circumstances and making its determination."

Another change occurs in 99.36(a). In connection with an emergency, an institution may disclose personally identifiable information from an education record "to appropriate parties, including parents of an eligible student [emphasis added], if knowledge of the information is necessary to protect the health or safety of the student or other individuals." The provision for disclosure to the parents, in this context, is new.

In addition, the Department will now require that the institution involved must record, under 34 CFR 99.32(a)(5), the nature of the threat and the parties to whom it disclosed information under the "health or safety" emergency exception.

53A-11a-301.   Bullying and hazing policy

 (3) The policy shall include the following components:

(d) procedures for protecting:

e) procedures for promptly reporting to law enforcement all acts of

bullying, hazing, or retaliation that constitute criminal activity;

 (i) a procedure for referring a victim of bullying or hazing to

counseling;

(j) involving the parents or guardians of a perpetrator or victim of

bullying, hazing, or retaliation in the process of responding to, and

resolving, conduct prohibited by this chapter;

(k) to the extent permitted by federal and state law, including the

federal Family Educational and Privacy Rights Act of 1974, as amended, a

procedure informing the parents or guardians of a student who is a

victim of bullying or hazing of the actions taken against the

perpetrators of the bullying or hazing;

If they have a policy they didn't follow it.  If they don't have a

policy they are in violation of 53A-11a-301.   

Under IDEA, children with disabilities are entitled to a free and

appropriate education (FAPE) in the least restrictive environment

practicable. In turn, a FAPE includes special education and related

services which are reasonably calculated to permit a child with a

disability to benefit educationally. Consequently, actions taken by

school districts to alleviate an unpleasant bullying situation for a

special education child in order to comply with Title IX's dictates

concerning peer sexual harassment may inadvertently also violate a

child's right to a FAPE by altering that child's placement and/or

programs. In order to prevent placing school officials in this legal

Catch-22, a legal model needs to be developed which ties the overlapping

statutory frameworks of Title IX and IDEA together in one hybrid legal

cause of action. Alternatively, if Title IX's stringent legal standards

for peer sexual harassment cannot be met in a given bullying case even

after incorporating IDEA concepts, IDEA may also provide legal bases for

special education children to obtain monetary damages against school

officials who have failed to protect them from bullying, which, in turn,

has violated that child's right to a FAPE under IDEA.

Social Skills Class

Marshall started a social skills class at his OT's office. They have been trying to get him in the class for over a year now but they always had it on Thursday afternoons at 4pm and there is NO WAY that could work for me. Even if it weren't 1/2 hr North of where I live, I still couldn't do it. So now, I'm thrilled that it will be every Friday at 10:30am until Sept. 18th. They will work on his communication skills, which will be so nice.

Today at church, he was asked a question by our Primary President. (The Primary is the children's organization. It's where they go to classes with other kids their age..kind of like Sunday School for other churches.) She asked him if he went to see the new temple that had been built. He just stared and stared at her. I had to go ask him questions and try to get him to answer them but he had no idea at all what she was asking. He never really answers questions. He is usually lost in his own world during church. I think he just turns inside to deal with the stress.

What a Jerk

I am so sick and tired of all the looks and comments about my son's shrieking.  JT can't talk and so his preferred method of showing any strong emotion is shrieking, whether it be sad, frustrated, angry, playful, happy, overwhelmed, hurt, excited or just when he wants to say, "Hey!  Look what I can do!"  So, as you can imagine, out in public we get a LOT of glares that clearly say, "Can't you control your son?"  

So yesterday I was in the store with my little sister, when my son got angry at something and let out a really shrill one.  This middle aged woman was standing about 8 feet away.  She not only gave me MAJOR stink eye but as she was walking away she actually said, "Come on lady.  Control your kid."  I was about to turn around and ignore her like I ignore everyone who says things like this to me but I saw my sister's face.  Slack jawed, pale and wide eyed it looked like she had been slapped.  She was right.  So I turned back around and said, "Excuse me?"  

"Your son just screamed right in my ear!"

"I am sorry my son is DISABLED and CAN'T SPEAK!  You JERK!"

Yes, I pulled out the disabled card.  But I wanted to run her down and tell her just how much I despised people like her that get so hateful that they have to deal with my son's shrieking for 5 seconds of their lives.  They think THEY don't want to hear it?  I hear it all day everyday for everything!  Some people have said things to me when he shrieked for joy.  I am not going to discipline my son for showing happiness.  And no, I am not going to discipline him for showing UNhappiness either.  He has the right to say how he feels even though we may not always like hearing it.  It isn't like he carries on doing it for minutes at a time it is just one long blast.

I hope I was never thought someone was a "bad mom" just because of something like this.  Why don't people just realize they don't always know the whole story and they just need to give a mom a break.

You're gonna want to read this!

Hello Everyone,

I got an e-mail today from a Mom who'd like to join our ranks. I accidentally deleted her e-mail, so I'll paraphrase this as best I can; She's been reading our blog a little bit and has really loved it. It's given her a lot of comfort and strength to know that someone somewhere understands. She has a unique and interesting story that I think you'll all want to hear- it could happen to any one of us! and what a nightmare! A version of it is posted here below. She is still trying get some sort of action taken and would love our support in her efforts. If you have comments for her you can leave them on this post. As I said, she is reading our blog, and I believe she's planning to join us soon.

Parents In Utah School Outraged Over Kids' Safety In School

Two parents found out weeks after the incident that their children were being abused emotionally and potentially physically by another student in their special needs class. The parents, told only of the incident by a classroom aide are furious that the teachers and school officials failed to tell them what actually had happened to their children while in the care of teachers. The events occurred at Plain City Elementary in Utah.

The mothers, Debbie Veldhuizen and Jamie Doak, have filed a complaint with the Office for Civil Rights and have sent notice to the Utah Professional Practices Advisory Commission and the Weber district. Nothing has been done. A lawsuit was dismissed for not being properly filed and they have since stopped pursuing it. They have moved their children out of the school.

But, What Happened?

According to a teacher's aide named Holly Wilson, a third child, not identified, touched Veldhuizen's clothed groin during school, causing him to have an accident. In addition, the same child harassed her son in the bathroom, screaming profanities at the child and threatening to kill him. The eight-year-old boy was so frightened; he was afraid to use the restroom and began having accidents. The other boy, Tucker Doak, does not speak and is about the size of a toddler. The same student choked Tucker and later tried to suffocate him.

The mothers believe that the school officials should have done more for their sons, specifically alerting them of what was happening. However, the school authorities said they did not alert outside authorities because they have to be careful doing so when children act out against other children. They work as a team to handle the situation and ensure it does not happen again. The mothers do not blame the offending child because he too is a special needs child. They do blame the school for the lack of notification and the lack of providing the proper environment.

Throughout the school year, there were four aides. Moreover, for six months of the year, there was no licensed teacher in the classroom due to budget shortfalls.

Posted by Richard Oppenheim

The Latest

So I haven't posted in a LONG time. We've had some really good days, some bad but really, he's doing quite well lately. We are now in the exhaustion cycle. Marshall isn't sleeping well again. Every night for the past 2 weeks, he has been waking up screaming. We have to go into his room and tell him he's OK. Then he goes back to sleep until the next time. He also talks in his sleep a lot. We go in his room at least 4 times a night. It is exhausting!! Still, overall I can't complain. He is eating and less angry too! That is so nice. We still need to improve eating some textures but when it's something he likes, he gobbles it down. We still can't get him to eat noodles. I made Chicken Noodle Soup with my own homemade noodles. We made him try a bite but he threw up. Oh well. It's still progress.

Four weeks ago, he was SO mad that I called my husband to say I was dropping Marshall off at the nearest crisis center because he was so out of control and I felt myself getting there too. Brian just told me to rake Marshall to him. He was at school working on his research so he made Marshall go there and be bored. Then, just before I was supposed to pick them up at the bus stop, I smashed 3 fingers on my right hand in the garage door between 2 of the sections. I broke my ring finger all the way through at the tip but only bruised the other two. I'm still wearing a splint and sometimes it still hurts REALLY bad but I think it is starting to get better.

Well, that's my update. I hope all of you are doing well.

TEACH ME

This is mostly off topic, but I am moving to Utah soon. Maybe in a few weeks or possibly next month. (ha! which is in a few weeks!)

Anyway, I am starting to think about things such as how the heck I'm going to transfer medicaid insurance/waiver, developmental therapy services, etc. Who's a good doc to see for special needs kiddos? Anyone I should be avoiding?

Can any of you mamas help me out?

This llama is waiting with pen in hand for some guidance!

Sometimes I hate it

Recently I had a HUGE influx of readers on my blog. The comments were not ... um nice. But after a day like today I can't help but think how much this sucks.

I love Tyler. I do. I try everything in my power to be the best mom in the entire world and I fail at it. I hate it. I hate that we have to do this. I hate that he has to go through so much. I hate that people think we don't treat Ty "normal." I hate that we have to do things that most people have NEVER even heard of. That getting routine immunizations is not the same as botox every few months. That your busy week doesn't get to consist of painting your house but dragging your kid to every therapy that anyone can think of PLUS some.

I don't get it. I don't get why its not OK that this can suck. Why do I have to be OK with it all the time? Can't I say it sucks.

Today we did casting for new AFO's. SMO's are coming with them and we are doing Titanium afo's but they are not covered by insurance OR Shriners. We have to pay half of them. But the casting part sucks. For real, this kid has been through 7 brain surgeries, countless pokes and prods and he really doesn't want to put on a freaking cast.

My hubby who works ALL the time was suppose to go with us to help hold him down. Yeah. That didn't work out. So here is my 30 pound kiddo, thrashing around, spitting, screaming, gagging kiddo while they put casts on him. Finally they had to get another person to help me hold him down. Yeah. A normal mom so gets to do that.

Seriously... I hate it.

Happy Ellie, not happy bowels.

Yippy! The short gut Cha cha! Ellie had another large bout of diarrhea this afternoon so we are back to just clears. We decided to try pedialyte through her G-tube at a very slow rate for tonight and then if her bowels tolerate that, then we will increase tomorrow morning.

I guess we were a bit to premature with the solid food. Usually noodles and plain chicken are pretty safe with her, but not this time.

Ellie still wants to eat but her bowels don't like the food. It is almost as though her colon is doing nothing, there is so much water in her stools. I don't know what this means for a possible discharge tomorrow. I personally would like to see more improvement or at least know what it is that we are dealing with before we go. But... that is just me.

We will find out more tomorrow when rounds and the GI team come through.

Clay Crisis Chapter 2

How do eight weeks pass, summertime be well into July heat, and we can hardly remember our way home? Sometime today, God willing, we will leave the hospital and not have to be readmitted for a long time! Clay's gastrostomy mickey is now replaced with a Gastrostomy/Jejeunostomy tube.....a lot more obvious and larger than the simple mickey, but if jejeunostomy feeds keep us home, by golly we will happily accommodate larger tubing and learning a new method of feeding him after 24 years!!! His stomach no longer empties as it should because of bands of tissue and anatomy constricting the area that opens into the intestine and also keeps food from back flowing to the stomach......(it's all complicated and at 50, my brain is much foggier than when I was 26, so I'll just say complicated; it all makes sense, just no need to go into grand detail for now).....so the J tube will allow feeds to be absorbed by avoiding the stomach. We will use the G tube port for medication dispersal and water flushes, but for the enteral Nutren 2.0, we now will use a feeding pump and slow feed the majority of the day through the J tube. Overwhelming? YES! Adjusting ~ adapting? YES! Clay has had a gastrostomy since he was a year old....bolus feeds; now to convert back to a jejeunostomy and a feeding pump is a work in progress, but feasible. If this measure keeps him healthy and at home, we definitely will learn and adjust accordingly. It has been a very long eight weeks with only 14 nights cumulative with him at home between readmits. Prayerfully the docs from Internal Medicine have finally pinpointed why we kept needing to return with feeding issues. Thank God, they feel this has been the reason.....all he has been through has been difficult and exhausting. But Clay is still with us and we hope this new feeding regimen will be finishing glaze on his now reformed vessel. There is much more I can explain and possibly post, but for now a smaller post to update our status. Please keep Clay in your prayers. We appreciate all of them as we anticipate going home at some point today and very prayerfully, our lives will begin to get back to normal with some modifications and rest. We are blessed to still have Clay here with us......so many amazing miracles and extreme blessings during this eight week ordeal. I cannot fathom how Mary endured Jesus suffering; I experienced much conflict with emotions in my prayers and groans that words could not express as we watched Clay suffering horribly and painfully as he has. His journey here is not finished yet; he says his angels have been with him and he is to stay here with us. I don't know for how long, but I will treasure my jar of Clay for as long as God ordains our purposes here on Earth. He is sovereign and He deserves much praise for all He has provided. Love remains never ending.

Much love, many hugs, and abundant blessings to all you mamas and amazing kids~ Annette :)

No Title

I highly recommend that you avert the eyes from this post. I have been sporting a bad attitude that has lightened the rose-colored tint to my glasses. And now all I see are the stark contrast between what (I think) things should be and what is reality.

Ok, so you are still reading. You'd better grab a handful of happy pills because right now, all I have it bleak ranting about how life is just plain unfair.

Let me start out by just saying that I work as an SLP with my local early intervention agency... and last fall, I went to a meeting where we were told that my state was implementing a new and innovative, top-of-the-line, best practices method for intervention. Enter "The Coaching Model". Last December, the first pilot program ran for the new Coaching Model and it has now been implemented. Let me just briefly digress and explain WHY this is not a good thing.
****
Imagine all of your therapists that your child works with. If your experience is like mine, you have your physical therapist, your beloved occupational therapist, and if you're fortunate, you cherish your speech therapist (I LOVED mine!). Then add to the mix your developmental therapist... and don't forget your service coordinator. Ok, so you have this team of therapists who help your child to reach developmental milestones. Now. The coaching model has a team of all the professionals... but instead of having 3, 4, or even 5 therapy appointments per week, one with each therapist, the coaching model involves just one (1) primary coach who has contact with the family. Your primary coach now provides ALL the therapies... so, if your Coach is an SLP, and your kiddo needs some OT or PT, then SLP will be doing therapy activities.

Now,this might be a good model for kids who are typically developing, but just have slight delays here and there. But as parent of a child with a known syndrome and multiple needs, I really feel like my child will benefit from highly trained professionals. I would not like to have my SLP do PT, or my PT doing feeding therapy. It would have been a disaster for my child... now back to my original train of thought.
*****
At the begining of the year, my governor announced state cutbacks of approximately 6-9 percent of all budgets across the board. As a result, kids in my state who were originally receiving multiple therapies plus an additional 30 hours of developmental therapy (typical in Idaho) were reduced to a max weekly amount of 22 hours of therapy. So for many kids, their services were cut in half- after PT, OT, and SLP, there's only about 15 hours of developmental therapy time left. THis is a big deal.

Last month, the early intervention program announced that all families across the board, whether they carry insurance/medicaid or not, will have a copay. A stinking copay to cover services that our federal laws have mandated our children to receive if we so desire those services.

And this week, a letter was sent out to all families with kids with disabilties that Medicaid coverage is changing as well and families will now be paying a premium for those services as well.

In doing a little homework, I have found that many of our western states have moved in the same direction. And honestly, my head is feeling heavy and I feel emotionally drained at the notion of the winds of change that are about to befall us. As parents of children with special needs, I really feel like we are about to be dealt a hand of cards that are stacked against us in a very big way.

For me, my daughter does not currently receive SLP, OT, or PT. She is eligible for services (won't go into why she's not gettin anything right now). She is getting IBI therapy over the summer for 20 hours a week...

We haven't found out what our premium is for her Katie Beckett coverage, so this could be a big deal for us. This is her only coverage right now, since Blue Cross private insurance (where I purchase the policy) will not insure her.

So my question to you is, have you heard any changes in your area and how is it impacting you?

I just got an update from Annette. Her father is still in the hospital struggling, and Clay has had several complications with his recent illness and surgery. It does however look as if things may be starting to look up. If you have a minute, send a prayer her way, or an e-mail. I can't imagine how difficult it would be to go through all that! We love you Annette & Clay!

Neurosurgeon

We went to our MRI appointment on Monday.  We had one or two done before he was two and then we had another one in...I think it was November.  The results were always the same.  He has a lot of brain damage and scar tissue.  They have been especially worried about the 3 and 4 ventricles because the scar tissue seems to be blocking them partially.  Last time they said they didn't want to send us to a surgeon because a surgeons answer to anything is surgery.  Makes sense.  So we waited to see what would happen.  

By the time I made it back home from the hospital, the radiologist had called my son's doctor who called us and the emergency contact and us again.  He started out so benignly.  "It's not good but it's not bad."  Okay.  It looks pretty much the same as the last one.  But it isn't better.  So waiting and seeing didn't do us any good.  It might be a little worse.  Hard to tell.  But the point would be that the pressure didn't go down.  Had I seen any seizures?  Had I noticed him getting worse with anything?  Was I sure?  I don't know.  He had seemed mostly normal I thought.  As normal as he is.  Here is the number for the Neurosurgeon.  

Brain surgery.  Next week we go in and find out just exactly what will happen.  I figure wait and see is probably out of the question.  We already did that and I guess it didn't work.  Besides, how long do you wait if it could mean additional brain damage?  We really can't afford to do that.  So what's next?  I have no idea.  Next week can't come soon enough. 

In the mean time I am slightly out of my mind.  I cried for 3 hours straight the first day and on and off for the past 3 1/2 days.  I can't remember anything, I can't do math, I can't sleep until I am out of my mind tired.  This could be the craziest I have been since he got meningitis.  Blah!  Not knowing what will happen is killer.  I would give just about anything to get in sooner but no can do.  *sigh*  Apparently no one cancels or postpones their appointments with a neurosurgeon.  Go figure.

Our Potty diliemma

I have had no idea how to even start potty training Tyler. There are so many factors that lead up to NOT potty training yet let alone on how to get it to work. Knowing he is almost 4 and still in diapers is kinda crappy. I feel like people look at us weird because we are still diapering. He is getting to big for "regular" diapers and only have one more size to go before we have to do something else. Luckily he is still kinda little so we are lucky that way.

As I have read about other people with preemies start potty training and it has taken a long time. These children generally have kids with nothing else going on ( or very little.) Because Tyler's prematurity is a little more than just little kid etc and it involves his arms and legs he can't get his pants down on his own. Which leads to the first set of problems. How is a kid that can't pull down his own pants suppose to go to the bathroom if no one is around to help him? He can't. Its an impossible task. Second problem is that he can't talk. How can a kid that can't talk tell you he has to go to the bathroom? He can't. Again an impossible task.

Ty doesn't stay dry for 2 hours at a time. He has gone without a diaper for a period of time so we could "watch" how things transpire. He holds it. He holds it and then he leaks and then he stops. After a few minutes he then just pees. We are aware he knows he is peeing or he wouldn't stop. BUT then what do you do? When asked he just says no. ( The only real word he knows) He never fights you to sit on the toilet.

What we have been doing is trying to get him to wear underwear over his diaper. Nothing big but for him it is HUGE. He has only allowed us to put them on once. With over praising and what not he was happy to wear them and wore them over night. ( again over a diaper) He will wear pull ups and understands that they are not diapers and doesn't sit down to put them on but again back to problem number one. He can't pull down his pants alone. Defeating again the purpose of potty training.

Well, we have asked and asked and asked. Sat on the toilet every single time I need to and NOTHING. Not even a small drip of tinkle. Well today he spent most of his day out in our little pool on the back patio and he was diaper less. Dallas noticed the holding and walked him into the potty. After reading a Ernie is to big for diapers book and Here comes the potty train, Dallas and I got a BRILLIANT idea of bringing in his portable DVD player. In comes Barney and Ty sits... and sits and sits. I decide to pull out my camera and practice with my new lens. ( Not great with closer shots but it was fun to practice anyway) and got a few cute shots with Ty and his DVD player. Decided to check... and GUESS WHAT... WE HAD PEE PEE!!

With HUGE claps and shouts of joy Ty gave us each high five and put on a pull up and off he went. He was not interested the rest of the night but we have some cute sitting on the potty pictures.

For your viewing pleasure. Ty went Pee Pee.



( No it was not my lens or camera. He really has red eyes. He had been in the water all day)



The rest were kinda fuzzy. I was getting ready to change lenses when we realized he had peed. I guess it is one success hopefully we will get more. Here is to PEE PEE!

Lab Results

We have been so busy lately with everything I haven't stopped by in quite a while. Here is what has been going on with us.

A couple of months ago we started a Gluten free Casein free diet and decided to go see Dr. Humphreys ND at Healing Solutions Pediatric Centers. A DAN! Dr. He saw both of our oldest and we only have money right now for the full testing on our son. The first test we did was a Metabolic Analysis Profile. The results showed low lactic acid, an elevated FlGLU or Formiminoglutamic Acid, and high glutaric acid. I am not a doctor so I am just trying to start researching what this all means and going over the lab results here are some explanations: Low

Lactic Acid or lactate: usually a result of reduced pyruvic acid

FlGlu: dietary deficiency of folic acid, severe oxidant stress, vitamin b12 deficient. Children with folate and or b12 deficiencies may be associated with autism, mental retardation, growth failure and seizure. This deficiency can be secondary to gastrointestinal disorders.

Glutaric Acid: associated with general neurological deterioration, spasicity and mental retardation, can lead to hypoglycemia, hypotonia, nausea, poor weight gain, poor weight gain. The second test we did was a blood test.

He ordered a comprehensive metabolic panel, iron binding, TSH CBC panel, strep test, copper serum, lead serum, zinc serum and DNASE. The potassium came back high, CO2 high, low ALT, high hemoglobin and hematocrit, and out of balance zinc. These lab results did not have an explanation attached but the Dr. explained that he may have an acidic gastrointestinal environment and an abnormality in the use of B12 which can lead to anemia. The copper to zinc ration in our system should be 1:1 and he is low on zinc which we will supplement with 30 mg. for 2- 3 months.

The regime to fix it all?
1) Diflucan or fluconazole for 10 days as well as a pro biotic called Maximum GI Health 2) Folic Acid- his need was a nine out of ten right now 3) Child Essence multi-vitamin one capsule a day for 1 week then go to two capsules a day 4) Omega 3's with super EFA (not Omegas 6 or 9) 5) Zinc 30 mg. 6) Go back in one month for B12 injections

In a nutshell...we have real results on paper. Something solid to look at which links with behaviors of autism and sensory integration. The methylation systemis not working properly, the GI has a bacterial issue and the folinic acid B12 is not converting the way it should to be available in his body. I am hopeful we will see results after treatment. We are open for ideas and thoughts...This is all new to me. I wish we had money to get our other children tested. One step at a time.

I have also noticed my son seems to always be cold or hot, no in between. He keeps getting hurt while playing and has a black eye and EAR??? currently. I am wondering if there is a possibile sleep problem. We find him up two or three times a night and during the day he seems like he could use a nap, but never takes one. Ideas?

Long time no blogging ( at least not here)

Hey ladies.... long time no blogging over here. Things have been super super crazy in this lovely household. If you want super nice in depth details head over to my blog. But otherwise here is our update.

Ty is doing super super good. For the first time in almost 4 years the stinker finally has an ear infection. That of course was after our "little" run in with the swine flu.

Yep you read it... We went on vacation to Utah and freaking got directly exposed to the swine flu for almost a whole week. The in laws had it. My hubbies sister was diagnosed with the swine flu while we were on our way home. Ty got hit with a super fast fever and the pukes the entire plane trip. I was flying alone so I was nervous as could be. But we had a fever for 2 days and then Dallas and I got the sickness.

We have been battling the flu/swine flu for about a week now. With everyone sick in our house we are not happy campers.

Our vacation to Utah was ... well.. I am glad it is over.

That was our current week. Right before we went on vacation we had botox follow up. Looks like we will be going for round 2 in July. His shunt seems to be stable for now. We all know how fast that can change. We were going to do summer school at the foundation for blind children but the above mentioned sickness has put us into just being home with mom. We just hired another respite lady. She is a grandma and we are hoping it works out better than the others we have had.

We are also ttc. We know that we will be on pretty close watch and hope that with the new respite people that if we need to do bed rest we will be all set.

That is the update from this tired mommy in Arizona. So glad to see all the good updates. You ladies rock.

Here is a few photos from vacation:



If you want to see more photos or see more of the update and more indepth and of course way more photos. Come on over to our regular blog.

Blogging

Hey everyone! I just want to thank everyone on here for the help you are always giving, in your thoughts, comments, ect. I really can't begin to express how grateful I am to have this place to go when nobody else seems to understand.

Now, that being said... I am wondering if I can get everyone's family blog addresses? I follow some of yours already, but would like to follow everyone. I promise I am not one of those cyber-stalkers.... I just love to see all the things going on with your family as a whole, and how you are making the difficulties in your life work out. If you are anything like me, you don't post everything you feel about your situation on your family blog. So I like to just see the fun things going on. If you don't want to share.. that is OK too. Or you can email me the address of your blog if you don't want it posted here. Thanks!

Jonahs CPT

This is jonahs Vest that I ahve been waiting for, This video was taken at the hospital but now we have one at home, I will post a new shot when I can get time. I just wanted to share a piece of Jonah's therapy with you.

Needing Pray

Health crisis with Clay since the 17 of May........unresolved as yet and hospitalized. Also my Daddy has been just placed on Hospice Care...........Please keep us all in prayer requests. Thank you all. Love & hugs.........

You+Are+Strong.jpg (image)

You+Are+Strong.jpg (image)

Marshall update

Well, I've been MIA lately. That's because I'm barely hanging in there with Marshall's behavior and I'm so tired I just don't have time to blog. We made it through the whole Daddy being gone for a week (barely), and then 2 weeks ago, we had a big medication mixup. Here is a VERY condensed version of what happened.

Tuesday night, May 26th, I picked up a refill prescription of Clonidine for Marshall. When I went to give it to him that night, I noticed it was bigger and blue instead of the small orange pills I'm used to. I told my husband that it wasn't the right medication. My husband told me the pharmacy probably just switched manufacturers and give it to him anyway. It was one of those nights when he was so wound up and out of control that we were pushing it to make it to 7pm when we give him his evening meds. So, we gave it to him but then my husband started worrying. He looked up Clonidine online and could see lots of pictures of what it looks like when made by different manufacturers but nothing was blue. So, I called the nurse for the on-call doc. She said not to worry, just watch him that night and make sure he's breathing, etc. I told her that doesn't work for me because we don't even know what we just gave him! She suggested we call Poison Control. Yay! Good plan! I was in the middle of my "Special Playtime" with Marshall so I had my husband call. Poison Control is so Awesome!! They figured out that what we had given him was really Clonazepam, which is a generic form of Valium. He got 2 mg of it. Poison Control said to watch him. I think they expected it to knock him out. Yeah, right. They don't know Marshall. He never reacts normally to medications. He was cycling through moods pretty fast and they were manic. He was crying and crying that he loved me. Then he was climbing on me, then jumping around, then angry, then crying again. It was frightening. Finally, at 10pm, Brian called Poison Control again. He forgot to mention the fact that Marshall takes Fluoxitine in the mornings and when he was reading about drug interactions with Clonazepam, he read that Fluoxitine is NOT a good one to have with it. So, Poison Control sent him to the ER close to our house. It's a community hospital, small, not the best. Do they even have Peds? Not sure, actually. Anyway, instead of giving Marshall the antidote for Valium, which is what Poison Control sent them there for, they tried to give him something to calm him down. Oh, and by this time, he was losing the ability to walk. His legs weren't working and he couldn't hold himself up even while sitting on the toilet. The ER docs gave him Benadryl thinking it would make him sleepy. NOT!! Then they gave him his regular dose of Clonidine about an hour later. By the time that finally kicked in, it was 1:30am. This boy can go and go and go unless he takes enough Clonidine. When Brian and Marshall finally got home it was after 3am. Marshall was now pretty much comatose. I mean, he was breathing but that's about it. He was so completely asleep and had no control over his bladder. We changed him, put on clean, dry clothes, and then I checked him 5 min. later and he was soaked again. So, poor Brian went out to the grocery store at 4am to get Pull Ups. We got him changed again, put him in his bed, then changed our bed. We finally got to sleep around 4:30am. The next day, we woke him up to go to the doctor at 10:30am but he wasn't really waking up that well. He tried to walk but kept falling over and crying. He fell asleep waiting for the doctor and slept through the whole exam. The doc even pulled his eyelids open and looked at them with a light but Marshall stayed asleep. If you knew Marshall, you would know that is NEVER normal. Not even close.

Ok, now it is 11pm and I'm so tired. So, long story short... Once he finally woke up, he was totally out of control. I mean, worse than normal out of control. His moods were going wild. It was seriously to the point where the doc was going to admit him to the hospital for observation. The only reason he didn't was because he felt like it wouldn't be any different. We can watch him at home just as well. I had to lock the deadbolts because he kept running away. Finally, I let him ride his bike outside until it got too dark. We called the on-call doc and made them call our doc. He said go ahead and give him Clonidine and his regular meds. It took until Friday for his moods to really start to get back to normal. It was so frightening. Needless to say, Valium is on my list of meds to NEVER USE ON MARSHALL!!!

Foundation for blind children

When we were in the NICU one of the last hurdles we had to cross was our eye exam and getting cleared from ROP. About 1,100–1,500 infants annually develop ROP that is severe enough to require medical treatment. About 400–600 infants each year in the US become legally blind from ROP.

Tyler is one of the 400-600 infants. He has amazing vision for the degree of ROP he has. While he is on the border of legally blind, he is considered to have low vision. He also suffers from nystagmus which makes his eyes constantly move and scan where he is trying to look. As a direct result from his surgery he has a coloboma as well. Though that doesn't seem to make much of a difference in his vision, it does make for a really cool eye.

When we moved to Arizona we lost our vision therapist but gained the foundation for blind children down here.

I was sent this from youtube that I thought I would share with you guys.

When we first moved here it was my life line. I met some wonderful women who attended the infant program. I am excited to send Ty back for their summer program. 3 weeks of vision geared activities. It is going to be great.

Josh's surgery...

Just a quick post to let everyone know that Josh is home and doing good. He made it through the surgery well and other than a bit of nausea, pain and stuff like that, he is happy and smiling!

If you want to know the details or see some pictures, come visit my family blog. Thanks to everyone for caring!!

www.christensenchaos.blogspot.com

Wish us luck!

We are taking Josh to PCMC tomorrow to have his G-tube placed and some biopsy's done. It's his first overnight stay in the hospital since the NICU. So it could prove to be very interesting.

His chronic constipation issue has finally gotten to the point of medications no longer helping. So a surgeon is coming in with our GI doctor to do a full thickness biopsy of his colon. We'll see if we get some answers between that and hsi upper GI Endoscopy and biopsy's there as well.

So we hope to leave the hospital saturday with more answers. It's worth a shot, righ?

Clay Crisis

Hi Moms, it certainly has been quite a long while. My computer processor died several weeks ago and then a week ago tonight we had crisis with Clay. Early on Monday morning, Clay entered into a risky abdominal explore that lasted almost four hours. He had a very rare bowel obstruction. They removed about 10 or so inches of digestive tract between the large and small colons and removed his appendix. He was in Surgical / Trauma Intensive Care until late Friday night. He is now in a Surgical Step down Unit and making strides. Only by the grace and mercy of God have we all survived. He has a total mid line incision from breast bone to pubic bone requiring 38 staples. The plus this time of having CP is that the uncontrolled movements meant he got over the soreness the rest of us would have gotten so frozen and stiff over because of the insult to the abdominal muscles. The incision looks amazing......I certainly did not heal near that fast, nor nice after my surgery last summer. His lungs were a big compromise from the long anesthesia and being flat/non ambulatory after surgery. He is still on supplemental oxygen, though less each day and not requiring nearly the deep suctioning that was required all last week. Needless to say, this was a horrific experience to endure for him. His little nasal passages and throat are very inflamed from the constancy of having to pass tubes down for the deep suctioning. His gut finally kicked back in today with two blasts of poops, but that is definitely something that was being waited upon and needed for progress. The stay has required wrist restraints at all times because of the CP and extreme random movements. He kept sliding down in the bed with legs always spilling over and out, wearing a pressure sore on his tail bone because of all the friction. If things continue to progress as we have been so answered by prayer, he will possibly move to a regular room in the next day or two. Quite possibly without further unwanted surprises, we may even be blessed to get him home around mid week, dare I dream. He is so desperate to get back home, to his queen water-bed especially with plenty of wiggle room and no slamming of body parts as in a normal sized hospital bed. There is a referral to have OT and PT consult, maybe tomorrow or Tuesday which might just be the exact thing we need to get those justifications for a new wheelchair. We've been very interested in the ones that come to a stand from a sitting position with the push of a button. He could even drive in a stand position. This will benefit because of the weight bearing, but also, importantly now, help with digestive processes that had grown lax and slow. I hope all of you are okay. I've not had opportunity to check in and read for weeks, but please know I have thought of all of you quite often, wondering if all was well........at least mostly well. Take care and hug your babies. Clay's 24th birthday was Tuesday and never would we have imagined he would be recovering from / surviving such a horrific emergency. Proves once again that Clay indeed still has a very important mission on this earth's journey that continues in progress.
(Please keep my parents in prayers.....my dad is in congestive heart failure and could pass away very soon or up to maybe 6 months. We've elected at 88 to allow God the decision to call him home and when......)

Speech Woes

Speech is such an ugly word in this house. It has been mentioned many times how badly we want to communicate with our child. It has been a source of contention many times between me and others. Its hard to explain what happens.

Tyler signs many words and usually we (meaning me and his dad) can understand what he wants. We got him to finally sign dad after he USE to say it. He now will only sign it. We have a handful of other signs/gestures that we know mean certain things. Once we explain them to others they can understand him.

When we started school we thought that being around other kids would help with his speech problem. That it would encourage him to be more vocal. While we heard more sounds and a little bit of animal sounds no words came out of his mouth.

We increased his speech and did private and are still doing private therapy. I take him once a week for an hour. Because of his need for being around mom we have transitioned him to being with just his speech teacher.

In February when we got his shunt replaced I called to talk to his teachers and therapists at school wondering why no one noticed he acted off there. For the first time in six months we found out that he was not making any sounds or making any progress with his speech teacher at school.

This was when the speech teacher mentioned he was snotty and wouldn't participate. I kinda of laughed and said " He is three. What do you expect." But I got mad. I sent a notebook every day and rarely got back any kind of feedback. I assumed he was doing fine. Communication came only when I asked questions. So this information was new to me.

I immediately sat down and went through books, puzzles, toys, anything that generated some sort of response from Tyler. I wrote out a long letter explaining noises, sounds, gestures and anything that he did when looking at certain objects.

The first day after that I got a response from his teacher. She said "Wow, we had no idea he would be this verbal." I thought for six months you got nothing and it didn't dawn on you to come and talk to me or call. I would have come in and helped you.

I was furious. But that hasn't really increased our speaking. When we got a failed hearing test everyone ( meaning teachers and therapist at school) thought this was the answer to his speech problem. Me and his dad rolled our eyes thinking that this kid can hear just fine. And sure enough we were right. Nothing was wrong with his hearing. He had his ABR done and not one bit of hearing loss at all.

This is were I started hearing from people " oh that is how my kid was/is" or " have you tried this" or my favorite " I am sure he says more than you think." Um nope. He really doesn't. In fact he makes more noises and sounds for me than he does for any one else. Not kidding. None of those things are comforting when you are dealing with a almost 4 year old. At some point communication is crucial. Speaking is needed to get your point across and to eliminate some kind of frustration.

We have been working on getting the beginning syllables out of his mouth. His private speech lady is trying so hard to get ba ba and da da out. All day long we have done something with speech. Him touching our mouths. Him feeling our throats. Me repeating and repeating ba ba ba.

After his bath tonight a most glorious sound. Ba ba

Cheers and clapping and excitement came. He did it again and again. Looking for praise. Clapping and cheering continued.

This speech thing is exhausting. It is a lonely world. Not just for me. But I can't imagine the loneliness he is feeling not being able to express himself and have us understand.

Speech

Communication

One word

Defeated

Marshall no longer qualifies for Special Ed. We lost that battle. We'll see how he does in a regular pre-school. Maybe it's just all in my head anyway. I must have imagined that my son has to be on an anti-psychotic and an anxiety med to control his anger and lots of Clonidine so he can sleep. I'm done. There's nothing wrong with my child. I guess I don't belong here anymore either.

Teacher Gifts

At the end of the school year, I usually try to do something nice for the teacher. Really there is no way to adequately say "thank you" for all they've done for my children but I hope the effort is worth something anyway. For my 5th grader's teacher I have a fun idea but for my special needs preschooler... I just don't know.

Crew has an awesome preschool teacher and then there is the aide.... the bus driver, the bus drivers aide, the school's PT, the OT, the speech pathologist, the vision consultant, the audiologist.... they are all quite instrumental in our lives. I mean really, where does it stop? I want to do something really nice for the teacher and I want to recognize the others but don't want to break the bank either.

Any idea? Do you give gifts and if so, to whom?