Wednesday, April 29, 2009

Who needs money??

Apparently, not us! LOL! We just had to put about 600$ into our van today. Not too thrilled about that, when you consider all of our money goes to Josh's medical bills..... but we need to be able to drive to those appts, right?

Anyway, that is not what I was going to blog about today though. I have something much more interesting.... at least for our household. Trevor is the subject of today.

This past monday was a meeting with the school district to determine Trevor's placement for 2nd grade. Scott and I were nervous about this since we knew it was going to be the first year he was possibly going to be somewhat mainstreamed. So we weren't surprised when that is what is going to take place. He will be put into a regular 2nd grade class with 'support'. Neither Scott, nor I, are exactly sure how we feel about this right now. He will be pulled out for resource help a few times a day, so that will be good, but I just don't know about him being in a class with 25 others students and one teacher. I just don't know what to think. At least we let them know we weren't thrilled over this idea, but they reminded us we can re-evaluate this fall. We'll see.

The team was great about helping us with some pretty big behavior issues going on with Trevor. We are actually going to get to meet again next monday to put into place some new ideas to help us at home, and to get us through the summer. I am so glad that we do have the help we do, I just don't want to backslide from where we are now.

We also had an appt with our wonderful Pediatrician today. Dr. Stevensen is a great doctor and we love him! He spent a good half hour just talking to me about what is going on and how things are going. After much thought and research, I decided that maybe some medication at this point isn't all that bad. So we decided to put Trevor on some meds to help with his aggression/anger problems for now and maybe just through the summer. It is a very low dose for now and we'll just increase in small amounts if needed. I never thought we would go this route, but we just can't keep on going this way. So we'll see what happens.

Other than that, things are the samo-samo here. We are just chugging along and waiting for some nice warm weather to get out more. Summer is coming on us fast. There is only 4 weeks of school left. Can you believe it?? Time sure flies!

Friday, April 24, 2009

Another Doctor appointment....

I first want to thank everyone for those wonderful comments left on my previous posts. I generally don't talk about that kind of stuff on our family blog (I leave it for the special needs blog I am on), but it was one of those days. It helps to know I have such wonderful and amazing friends and family . You rock!!!

Now... today I took Jordan in for his Kindergarton Physical. He did very well with all the testing. His eyes are great, his iron is good and finally there is no longer blood in his urine. He weighs a whopping 33.3 pounds which put him into the 3rd%. The doctor suggested some PediaSure to get some calories in him. We'll see about that. He was 42.5 in tall and in the 50% for that. So tall and thin. Like usual. They had us fill out a developmental questionaire with all sorts of things for Jordan to do (such as drawing, writing, ect). He was quite a bit above the average on that in every area. He is doing great!!! It is soo nice to see that for me since I don't spend the time I need to with him on those things. Thank goodness for preschool!

So, the bad news? He has Strep!!! His lymph nodes were swollen.. have been for about a month and so she wanted to do a test. I was a little surprised about that since he is acting fine. When the test came back positive, I was floored! So he has had it for awhile. Poor kid. So he didn't get his shots today (he was happy) and we will go back next week for a second strep test and shots. Yea for us!

I have included a couple pictures of Jordan at the airport this past week with the F-16's. My dad got some good pictures of him and I wanted to share!

Thursday, April 23, 2009

Some things going on.....

Today was one of those bitter/sweet days for me. Josh had therapy with the OT at the Rehab for Primary Children's. Today was the first day that she worked on non-eating sensory issues. We went into a therapy room with all kinds of equipment, swings, toys, ect. He had a hard time just walking around since there were gymnastic mats out all over. He tripped and fell several times. Tera (his therapist) got him on a swing and he flipped out. This kid LOVES to swing, so you could tell just how uncomfortable he was. Even though we didn't do a whole lot, I still felt like it was productive. Tera taught me how to do the tactile brushing and massaging to help him with his sensory issues. She also gave me some really good ideas on how I can help him get the sensory input he needs in the most productive way. He is really struggling right now with sensory things and it is something I don't know much about.

And after giving the braces a break about three weeks ago, look what is back.........

Yep. The braces. He was tippytoe walking so bad and both his OT and PT with Early Intervention we had to get them back out. (although his are blue in case you are wondering!) He is doing much better, less falling ect. so it is good. But I had a hard time with it this time. I just wanted SOMETHING to be going good, or for one part of all this to be done. I know it won't be forever and he will probably just need a few more months but it was still disappointing.

After therapy we went to pick up Jordan at my friend London's house. One of the other ladies from our ward was there with her son that is only a couple weeks younger than Josh. He is such an adorable little boy and I see him in nursery every week. He was climbing all over the playset outside and having alot of fun. It must have been the mood I was in today, because it made me so sad to see Josh having a hard time walking in the backyard, not able to climb onto anything and not able to pick up the big truck they were playing with. For the first time I just felt like I had to get out of there. I don't usually have this problem since I am in nursery with Josh and other kids his age and see this all the time. But for some reason today it hit me like a load of bricks.

We are having some pretty big struggles with Trevor right now that is making me second guess everything I do as a mother. I wonder at times if I am doing the best I can be, or if I need to try harder. I know that everyone goes through this and I am no different, but I feel like I am running blindly as fast as I can and hoping I don't run off the road. There is so much about Trevor and Josh I don't know and at times I wonder if I am doing a good job. I sometimes wonder how I ended up with two special needs kids that are so dependent on me for so much.

Anyway, I didn't mean to ramble on so much. It was just one of those days that I looked at Josh and saw all the things he still needs to learn just to function in the world. It was an overwhelming day and I am glad I can go to bed tonight and wake up with a brand new start tomorrow.

Monday, April 20, 2009

A Day in the Life of Jordan

So today has ended up being a great and fun day for Jordan. Since Scott was off on saturday and today, we had more time than usual to get things done around the house. On saturday we did all the cleaning and planting we needed to do. So today after Josh's therapy Scott decided to take Jordan fishing. To say he was excited is a huge understatement. He was bouncing around the 5 minutes it took for Scott to get the fishing gear all loaded. Here is a couple pictures Scott took of him this morning.

Then this afternoon my dad called and told us there were some Military F-16's at the Ogden Airport. I guess one of the jets blew a tire while landing and crashed and shut the base down for landings. So they flew into Ogden Airport to wait for the base to open up. So Scott hurried and took Jordan out to see them up close, since my dad can get him on the ramp. He was sooo excited to get to see the jets that fly around all day long here... up close and touch them (his words). When they got out there one of the National Guard men let Jordan climb into the cockpit. Jordan was a little scared to go up the big ladder, but he did it. And he was so excited. All he could tell me was about the yellow lever (ejection lever) and how you aren't supposed to touch it.

So I think Jordan got to have a pretty fun and eventful day. I was so glad, he really needed some fun. He kind of gets lost in the mix here at times with all we do for Josh, and then dealing with Trevor. He just needs some alone time with us and it's hard to get that. But he had a wonderful day and was so happy. It makes it all worth it!

Sunday, April 19, 2009

A sick week

I haven't had alot of time to post this week due to sickness....yet again. I was not feeling the best on Easter Sunday and ended up in the doctor on monday with Strep Throat again. Scott went in on tuesday with it as well. The kids, thank goodness, have not caught it from us. Josh did have to go to the doctor on thursday with another ear infection. He is still recovering from a cold and runny nose. Having a feeding tube with a constant runny nose has posed some interesting problems, and I have had to re-tape his tube daily. He hasn't been thrilled over that, but dealt with it OK.

The other two are doing good. Jordan is finally getting over a cold he had that lasted for over 3 weeks. Trevor was sick recently too, but is fine now and hasn't caught anything going around in our house. He has a Field Trip tomorrow for school and is so excited to go.... so I think even if he was sick he would tell me he wasnt :)

Other than that, we have had a pretty uneventful week for the most part. This weekend the weather has turned warm and sunny so the kids were able to play outside finally. Most of next week looks very good, so maybe this week will be a better one with something more to do. Josh loves the outside and now that we can be out there, his Physical Therapist can work on some of his outside walking issues. That is one of our next hurdles we have been dealing with.

I am glad that I can finally blog about an uneventful week for the most part. Now that I am feeling better again, we can get back into the swing of things. I hope everyone (at least those of you living in Utah) get out and enjoy this gorgeous weather.

Sunday, April 12, 2009

Happy Easter!

Happy Easter Everyone!!!

Saturday, April 11, 2009

Be Prepared

I am sitting here trying to decide what to say. It's time for an update on Josh, but I am struggling with what to say. It's just one of those days where I want to say everything is hunky-dory... but it's not and therefore am not sure what to say.
I did take some pictures of him tonight, he was playing with the boys and laughing. It was so cute.
Anyway, today we went back to Primary Children's Medical Center for a Barium Enema. Yep... it was fun stuff. As I sat there trying to tell him I loved him and everything was OK, I got a little emotional. I usually am good at putting up a strong front during dr. visits, tests, therapy, ect. But today was just one of those days. I started thinking what if everything is NOT ok? What if Josh has to do more tests that are hard, painful and terrifying for him? I am emotional exhausted today with everything, and really wanted it to be done. But... fate had other plans. I rushed home to give my mother-in-law a break (she took the kids today to Baby Animal Days and had them for most of the day). About 15 min after getting home, Josh has a blow-out. He had a TON of Barium in his little body that had to come out. I just sighed and got to cleaning him up. As I am taking his clothes off, I realize his NG tube is covered in baruim/poop mixture. GROSS!!!!!! For those of you who don't know much about the tube, it is taped on his face, over his ear and then some more tape keeps it on his back, tucked into his shirt, and hangs down. Well it was down far enough that when the top of the diaper leaked... it got covered. Since he needed a new taping job that I had put off.... I realized I was going to have to take his tube out, replace it with a new one, and cause more pain. Oh... I just wanted the day to be done. It's days like these that I wonder what else can go wrong before I can go to sleep and start a new day.
But on the flip side, he is now OK and forgave me for all the pain of pulling off tape and sticking the tube down his nose/throat. He continues to amaze me with how well he can bounce back after a day like today.
So, for some updates now... he is still a ball of energy. He is all over the house getting into things he never had the energy for before his NG tube. He is not making any progress with the eating, but we kinda of figured that until we get the tummy issues figured out, he isn't going to want to eat. I am so tired of the constipation issue, I hope I can push to get it resolved in the next couple weeks. We will get the results of this test on monday.
Other than that, he is doing good. He is such a good boy and very lovable. He is really into giving hugs and kisses lately. We are so happy to see him being so interactive, it's just priceless.
Enjoy the pictures!

Friday, April 10, 2009


Today Trevor got a birthday card in the mail from my sister and her family. Amy knew he would love to get mail... which he did..... and was elated to find a Walle card. And not only a card, but glasses too! So I snapped a couple pictures so Amy could see how excited he was! Thanks..he was so excited!

Thursday, April 9, 2009

Happy Birthday Trevor!!!

Today is Trevor's 7th birthday. Since it is Easter Break the kids are not in school. So since Scott had to work yesterday, he was able to have today off. He took Trevor and Jordan bowling for some birthday fun. I didn't go since Josh can't walk around there and is always stuck in a stroller. So Scott took some pictures for me. Enjoy!

Here is Trevor opening the last of his birthday presents. He had two parties last weekend but we made him wait until today for his presents from us. He was happy with what he got.

Saturday, April 4, 2009

A day with Josh

This is the last post to catch you all up....

Last night I was taking Rosco outside to go potty. I came back in a couple minutes later to find Josh here......

He is so funny sometimes! It is nice to see him with so much energy and happy. We love this kid!!!

Poor kid!

Trevor had a rough week being sick. I took him to the doctor on monday since he had a high fever I couldn't get to go down. He had a double ear infection with one ear drum possible ruptured. So it took him a few days to get better. He slept alot more than usual and spent alot of time on the couch. One of the nights he was laying there sleeping and Scott and I were watching TV. Scott looks over at Trevor and started laughing. This is what we saw...

Poor kid! He was sitting up and asleep. It is nice he is feeling better now!

Family Party

This past tuesday my family went to dinner at El Matador. Since my sister and brother-in-law are here from Philly, we went to their favorite restraunt. It was so much fun! Afterwards we came back to my house to visit some more. We got out the Wii and had some fun. Amy and Luke don't have any experience playing so it was very entertaining! Just a couple pictures I took that night.....

I miss those guys so much! I can't believe their two week visit is over tomorrow morning. We won't see them again until Christmas. We love you guys!

Thursday, April 2, 2009

Autism Awareness Day

Today is Autism Awareness Day. April is also Autism Awareness month in case you didn't know. I thought I would just share some of my thoughts about the road of 'autism' we have traveled.

I am including some pictures of Trevor through the years as well.

Before Trevor was born, I didn't know much about Autism and I didn't know anyone personally that had it. I honestly had no idea of the signs or symptoms. As many of you know he was born 4 weeks early, so when he wasn't hitting his milestones on time it was just passed off as a little behind with prematurity. As he got older and things like speech and language didn't come along, we knew something was wrong. We had a wonderful pediatrician who sent us to Early Intervention at 17m to get an evaluation done. He came back delayed enough to begin speech therapy. By the time he was 2, it was clear that there was more than just a speech delay going on, and this is when the possibility of autism began. By age 3, I was 100% sure that is what he had, but it wasn't until right before his 4th birthday he was officially diagnosed. He also began the Northern Utah Autism Program the fall of 2006. He had done amazing with the help he has recieved and I don't even want to think about where we would be without all his therapy.

Being a parent of a child with autism has been a challenge, but very rewarding. I think we celebrate milestones more than most parents do, simply because we never know when, or if he will really be able to accomplish the goals.

It's been a long and bumpy road, with some early health scares and bad allergy issues, but we made it through just fine.

We have amazing family that has accepted Trevor for who he is, not what he should be. We have been on family vacations in which they probably got frustrated, but were very understanding anyway. They are wonderful!

Trevor really is an amazing little guy who has come so far in his short (almost) 7 years. He tries very hard and works at making his way in a world that is not easy for him to deal with. He has a determination that I hope he never loses.

On this day of Autism Awareness, I hope you all may pause and think about how often Autism is being diagnosed. One in 150 kids have autism. So next time you see a child acting out or screaming at the store, consider that the child may have autism and is very overwhelmed. I wish that every child being diagnosed had the same opportunities that Trevor has had to succeed.
And if you are still reading this, thank you for all your kind support and love for our family. We have some rockin' friends and family!