Sunday, August 29, 2010


Does/has any one sent their child to Pingree??? Jonmah was diagnosed with High functioning autism, but the dr said an autistic school would be ideal for him. I called a feew in the salt lake area and A they are either to expensive or B, they are ABA. I called and the waiting list for Pingree is any where from 6 months to a year and a half!! Is it worth it?? What if i just home schooled?? He is just approaching age 3, so he will be in preschool for 3 years. Im just looking for some thoughts and ideas on education for autistic children.

Friday, August 27, 2010

Baclofen anyone?

Our doctor has suggested we try baclofen for Josh's spasticity. Does anyone know anything about it? So far I have read that you can become less coordinated, have fatigue, become depressed, or become irritable. There are also some bad side effects for quitting cold turkey but I don't plan on doing that. Anyone? Anyone?

Wednesday, August 25, 2010

Botox Problems

Hey guys! So last January JT got botox like he does every 6 months but something went wrong. After a month the botox started wearing off and wearing off fast. Within about 5 weeks of getting it we were back to where we started. The reasons we were given were that:
1. It was a bad batch of botox
2. It was a badly placed injection
3. For some reason his body isn't reacting the same way it used to.

So at the beginning of August we did another round of botox and this time we bumped him up to the maximum dosage. It worked. I have never seen his leg be that weak. You could tell how he walked and moved that the botox was working and when I pushed his foot back toward his shin it actually MOVED!

But now, not even a month later, I can see him tightening again. We have a night stretching strap but now that I am putting a little tension in it he can't sleep through the night with it. I can barely get his ankle to 0 (ankle and a 90 degree angle) and when I do he says, "Ow".

Have any of you been here? Do you know of other options other than surgery? We see his doctor in about a month but if I can come with some ideas it would be nice.


I am in need of some advice and direction....

3 months ago, or so, Bree was released from Early Intervention. She did not go without a fight that's for sure! She had so many pulling for her- her PT/OT and speech therapist were fighting the system, so to speak, to get her into the pre-school. After her test came back and she was just a few point above the lowest qualifying score, it was ultimately decided that she would not continue. I was upset at first but then realized that it was going to be okay and we would figure something out.
Since then my hubby got accepted into grad school (YAY!!!!!) and we have moved to Utah County (Provo to be exact). I told myself I would let Bree have a really fun therapy free summer- and we would pay for it later. School is starting in the area, meaning summer is coming to an end. So it is time to "pay for it" I guess. I am feeling a twinge of guilt due the fact that I am not the one that will really be paying for it; it was a nice break for her. However, she has really fallen behind and even regressed a bit. {BAD MOM!!!}

I have looked into a few programs in the area but I am wondering where to go, as we are new to the area and Early Intervention still isn't an option. I have checked into the Now I Can Foundation- Thanks for that post. And that could be a possibility for her, but it will be a pricey one for us.... Any ideas or thoughts?

Thanks! And Welcome to the the new Moms! I am excited to have you here!

Monday, August 23, 2010

My Story

Hello all! My name is Kat, I got thrown head first into the world of special needs a little over two years ago and have been charging forward ever since! I have two amazing little girls, Taylor who is 4 (and a half!) and Madison who just turned 2 in July. Madison was born with Down syndrome. Here's my story...

I was 22 when my husband and I found out we were pregnant for the second time! We had just barely decided we we're ready to start trying for number 2. It was 2 months before our first daughter's 2nd birthday and it didn't take long, one try and I was pregnant! Everything seemed pretty normal. We were in the process of buying our first home and I was training at my new "big girl" job.

During my pregnancy I took the AFP test which is supposed to check for any genetic "malfunctions." I wasn't at all worried about the test and just took it simply because my doctor told me to. In fact at my next visit my doctor told me that my test results came back normal and I had completely forgotten I had even done any tests (that's pregnancy brain for you!). During my 5th month I got the flu really bad and dropped 14 pounds fast so my doctor wanted me to visit a high risk pregnancy doctor to keep an eye on our girl. Everything there was completely normal, she measured two weeks bigger than she should but my doctor said not to worry she'd just be a little big, possibly 8 pounds but no bigger.

Fast forward to 2 weeks before my due date, my contractions start! We jump in the car and drive to the hospital and 3 hours later, after the wonderful anesthesiologist messed up during my epidermal and did a spinal tap on me by mistake,our baby girl is born. She weighed in at 9 pounds, 2 ounces! When the doctor put her on my belly I noticed something was different but I didn't know what, mind you my head is spinning still from the spinal tap. The nurses take her over to clean her up and they had worried faces. I told my husband something was wrong but he kept assuring me she was beautiful and perfect. I asked him to go over to her because I just knew something wasn't right. My doctor could tell I was getting panicked so he came over to me and told me the news that changed me forever.

"I think she has Down syndrome."

There it was.The phrase I never imagined I would hear. I'm 23. Who thinks they will have a child with Down syndrome at 23?

"Are you sure?"

"I can't say it matter of fact but based on what I see I'd say she does"

I cried. A lot. I didn't know anything about Down syndrome. I knew some basic characteristics but that's it. My doctor called our pediatrician, our angel with a stethoscope, and she was there within the half hour. She held my hand while I cried and she confirmed what we already knew, our baby had Down syndrome. She told me we could do this. She told me that things may be tough but we were strong and so was our baby and together we would do this.

After she left I locked myself in the bathroom to cry. I left myself have that moment. At times I regretted that, questioning myself "how could you cry in despair the day your daughter was born?" but now I know I needed that. After I cleaned myself up I asked to hold my baby. I held my baby and looked in her eyes and knew I could do this. With her in my arms, I can do this. And I have.

She is two years old now. She is a healthy little girl. We've had our bouts, a couple E/R trips, pneumonia twice, and some minor delays but we get through them and come out stronger. I know two years doesn't seem like long but I have grown so much in those two years, right alongside my husband and our girls. Our girls are both very smart and oh so entertaining! I can watch them for hours. My job was very understanding and now they let me work as extra help so I get to pick my schedule and the rest of the time I get to be home with my girls. It's not always easy, but its always worth it!

I look forward to getting to know all of you as we share our journeys! I also have lots of family updates here! Our local foundation, Central California Down Syndrome Foundation also has a website, CCDSF, if you're interested in looking.


Friday, August 20, 2010

Introducing Samantha

Hi. I'm Jenny. I'm wife of Marcus. Mother to Samantha and Callie. I'm a happy person most days. But I think I'm pretty normal. I get frustrated and angry too. About 4 years ago, I used to get my feelings hurt a lot.

Just over four years ago, Samantha was born. We knew at 20 weeks gestation that she was not developing properly. This, we knew. We knew her head was too small. We knew there were some major concerns with this. We knew that it wasn't "normal" to have a head that was too small and we knew it wasn't "normal" to be monitored weekly by doctors for the last 17 weeks of pregnancy. But we also knew, through blood work, that though they didn't know what the problem was, they didn't think it was life threatening. Our baby had a good chance of living through the pregnancy.

We did a lot of internet research. "Small gestational head circumference." Google can be great, but can't it also just break your heart? I spent hours looking at different websites, trying to find out as much as I could about the unknown. It's quite challenging by the way. But among the things we knew was the fact that she had microcephaly -- micro (small) cephaly (head). During my pregnancy, though, I felt such peace. I felt a true sense of "It'll be ok." I took that to believe her head would be fine. Miracles happen. Some people would have called it denial. I called it faith.

They induced me early and had a team from the NICU ready to whisk her away. She came so quickly...and after 3 pushes (it helps having a small head), she came out screaming to the world. She was healthy, but small, and she was able to stay with us. No NICU needed.

Three months later we went to a geneticist at Primary Children's Medical Center in Salt Lake City, UT. She received the diagnosis of Primary Autosommal Recessive Microcephaly -- there was no genetic test to confirm it, but she fit the bill (though I had my own feelings that wasn't her true diagnosis -- but what did I know?). We were told it was extremely rare and that they couldn't tell us much. She did print off some things she found on it, and sent us home. Back to what I knew: I knew my daughter had a small head. I knew she was "healthy." I knew I knew it was going to be ok. And now, I knew she had this diagnosis. Things didn't compute. But it was ok...because things were going to be ok.

It wasn't until about 3 months later that I thought, "Things are NOT going to be ok." We were doing therapies and she wasn't progressing like the many other babies in our church group. People were staring at us in the store. Some asked questions that made me go to my car and cry -- "What's wrong with her?" It was so hurtful. I wanted to shake them and scream, "Nothing is WRONG with her. She's a beautiful little baby girl who happens to have a small brain. [insert insult here.]" I know, real mature. But I never said or did those things. I'd just answer their questions politely, "oh she was born with a genetic condition." Or if I didn't feel up to it, "She's just small. My itty bitty girl." And smile as I'd try to hide the tears. My emotions were very close to the surface as I was realizing that things weren't ok...little did I know they'd get worse...and I was feeling so extremely overwhelmed.

It was then I decided I couldn't live my life this way. I decided to change. What I felt before...that it was going to be ok, was true. It was going to be ok. Maybe not how everyone else thought, but it was going to be just how my Heavenly Father wanted it to be. Samantha was sent to our family, the way she was, for a reason. Maybe just to increase my own faith, or the faith of those around her. I decided to be strong, and to be the mother that Sammy needed me to be. I also realized that people can be insensitive without meaning to be. They are curious, and I didn't want to discourage people from asking questions. I wanted to educate them. After all, if what Samantha has is so rare, what an opportunity for people to learn how this amazing little girl with such a small brain can be.

A month later, life became more hectic and I was so glad that I had changed my attitude before we began the life of seizures, surgeries, and sleepless nights. Samantha is our angel. She really is. She is the sunshine in our day. She's tough at times, sure. But she is such a delight. The day she was born, I sat on the bed holding her in my arms. Marcus leaned in, and with his arm around us said, "One day, we'll look back and will say 'we wouldn't have it any other way.'" He's right. It took some time, but today, I can say that most of the time that is how I feel. I see how much she has changed us. She is quite the star at the local grocery store. They all know her. Before we moved, she regularly got suckers and stickers from the workers at the stores. She has a magical power over most everyone she meets.
We are still uncertain about her diagnosis. Most recently it was suggested to us that she may, in fact, have a form of primordial dwarfism -- Seckel Syndrome. When our insurance changes, we are thinking of pursuing genetic testing. But even if we never know for sure her scientific diagnosis, it's plain obvious that she is plagued with love, determination, and the purest most beautiful spirit. She's just my sweet little girl -- our lil' samsquatch.

Saturday, August 14, 2010

Been Forever : an update

It has been such a whirlwind of a summer. Since it is slowly winding down and I am trying really hard to wind stuff up and get things caught up. I thought I would send the before school update.

Ty has done FABULOUS this summer. He didn't qualify for summer school ( boo!) so we decided we would do private therapy until his first surgery of the summer. Of course that never goes to plan and his surgery really messed up the entire month of July and Augusts therapy schedule.

The bonus: we took time off from speech and the toot face is now TALKING. He is doing fabulously well. He picks up 7-8 words A DAY! He is doing really well. Some are not phonetically correct but they are working and functional words.

He received his phenol injections and his tonsils out at the same time in June. Which messed up our casting schedule so we didn't get casts on. I think for summer that works but for winter I would LOVE to see him get casted again.

I am so thankful for Ty and all he is doing. Parenting got HUGELY easier. We hope it continues on the upswing.

The other stuff going on is driving me insane!! Dallas has been sick and he has been in and out of the hospital and them not finding anything. We think it is gal bladder and only have a few more tests before we can finally make them take it out.

We have also been dealing with infertility. 2 years we have tried to get pregnant and have resorted to IUI treatments only to have our meds TRIPLE the cost from our first month so we have had to take a step back. It has been the HARDEST thing for me EVER.

But that is us.

Thursday, August 12, 2010

Now I Can Foundation

I met a neat Mom at the special needs dance class I've been telling you all about. Last night, her husband told me about this amazing therapy. I am basically copying all this from a post on her blog ("kidz" in the side bar) and I hope she doesn't mind.
After I checked this out, I just had to post it. I think so many of our little kiddos could benefit from this.

Also, please check out the "Now I Can" Foundation Website. They need votes to get $100,000 of funding. and believe me they deserve it.

Monday, August 9, 2010

A great new resource.

I got an e-mail today from Amanda Ellis. She is a board certified music therapist. She works with children and adolescents who have a variety of developmental disabilities. She writes songs to teach kids and help them with specific (non-music) goals. She writes custom songs for children at parents' request, and has a variety of songs for download on her website. They are $1 per download. You can check her out at if you are interested. I'll also add it to the resource list in the sidebar.