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!