You are Strong

I have been debating on this post for awhile. I usually don't do posts like this on our family blog, but here goes nothing.

First of all I want to share with you a poem I got from my friend Jessica, whom I have met on my "Thru the Tulips" special needs blog.

YOU ARE STRONG
*********************
How often has it happened - an acquaintance hears your story or sees your child and says "I'm not as strong as you. I could never deal with all the things you deal with." And you shake your head modestly, and brush it off and maybe even feel a little condescended to.*** But you know what? They're right. You are strong. You're facing things that the average parent doesn't even want to imagine, and you're handling them.*** Whether you were strong to begin with or had strength thrust upon you by necessity, you're one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be so strong. But appreciate that strength now. It makes you special. Capable. A force to be reckoned with.****

This poem has hit me hard the last couple weeks. I have found myself time and time again reading it throughout the day. I think it was written just for me to express how I feel.

When Scott and I got married 8 years ago, I was like most young bride's.... full of hopes and dreams and visions of what our life was going to be like. Needless to say it has not turned out how I imagined. But I wouldn't change a thing. I love my kids and love everything about them. Raising kids with special needs is not easy. It is a day to day survival of the fittest it seems. But it also brings me such joy and happiness that I can't imagine my life without my kids. The thing I probably struggle with the most, emotionally, is the heartache I feel that they have to work so much harder than other kids to do the same things. Trevor doesn't have any physical challenges and never has, but works hard to keep up with the other kids academically. Josh just has to work hard at everything for so long to accomplish things. Like climbing on our couch. He worked for MONTHS to be able to do that. It is the same with everything he does. He is a very determined little boy and tries so hard... but some days I just wish he could figure things out and get his body to do what it needs to so he can do something he works so hard at. I know that Heavenly Father is mindful of him and that he truly is OK, but it is still hard as his mom to see how hard he has to work at the simple things.

So the reason for this post was to share that poem with you and let you know how I survive each and every day. I also rely on my friends and family to be my support system. Thank you everyone! You're the best!

Changes in our house

I have been putting this post off...since we are still in the process of getting things in our life figured out.

We found out on monday, June 22nd that Scott lost his job. Since he is the sole income in our family, you can imagine it was a stressful time. Since then we have been quite busy trying to figure out what we are going to do, how we will make this work and Scott has turned in over 40 job applications.

We have gotten the ball rolling on unemployment to help us through this stage. We also are working hard to get Medicaid in place so Josh won't suffer. Our insurance covered us until the 30th of June, and after that we are on our own. As you probably can guess..... Josh's medical expenses probably are around 2,000$ a month. So we NEED coverage! LOL! I have been reassured that Medicaid will kick in asap and we will be OK. That has been the biggest stress of all.

But through this I have had the chance to sit down and remember what is truly important in life. We will be OK, and life will go on. It might not be the way we thought it would go, but we will be OK. And since Scott was looking for the last year for a new job anyway, it probably is a blessing in disguise. I can see us looking back a year from now and realizing it was for the better.

So until then.... we are having lot's of family time and surviving the summer. If you hear of anyone hiring or know of any job openings, please pass them along. Thanks!

Park

Today we had a fun day at the park. We met my parents, Chan, Brian and Parker at the Layton Park. The kids played on the playground and fed the ducks. I didn't get as many pictures as I wanted since we were trying to keep track of all three kids. Josh has never been able to play at the park before. He wasn't able to walk until november, so he missed out on the park last summer. This was the first time he actually got to play. And boy was he in heaven! Enjoy!

Updates and Tent Fun

Yesterday Scott set up our tent outside to make sure it was still in good condition before he takes Trevor and Jordan on the annual Father and Sons camping trip. The kids all enjoyed it, even Josh.

Don't mind Jordan's weird face.... he is into pulling faces for the camera.

And here is Trevor all wrapped up in the floor of the vestibule. He has not been camping since he was 14 months.... so this year will be quite the adventure!

Trevor has been having a good summer. He is being very good behavior wise, but that is because we have kept to a good schedule. He has been more clingy than usual and hiding in his blanket most of the day... every day.... but it's hard to adjust to the summer routine.

Jordan is doing good too. He is going through a bit of a rebellion stage so he has had many priveledges taken away, but seems to be finally getting better. He is a ball of energy and still talks all day long.

Josh is doing about the same. We are still trying to find him things he can eat and getting him to take food by mouth. He is not a big fan of eating at all right now, and has a big problem with 'holding'. That is when a child puts food in their mouth and just holds it inside before either swallowing or gagging. Josh had done this in the past, but never to this extent. He even holds his saliva and won't swallow it. So I called his OT with Primary Childrens' and took him in a week ago to get some help and to get him going there again (we took a break for 4 weeks from there). She did all eating therapy and at the end told me his progress is at a standstill and it doesn't warrent anymore visits with her. Well unless he makes some big progress. Can you believe it? I was floored. I thought that was what therapy was for..... to help him with is feeding issues!! So after some frustration, sadness and tears... I decided I am done with her. The end. I called up the OT through Early Intervention that has been working with Josh since he was 6 months and told her that we are in need of help with the feeding again and I was done with the other OT. She was shocked that happened. She said he is clearly struggling with something and she can't believe that other OT would abandon him right now. He is recovering from surgery and needs some additional support. And once again I felt better and thanked Lynda for the millionth time for taking such a vested interest in Josh.

So that is about it in a nutshell. Once again we are so thankful for those therapists that have been with us the last 18 months. They are all amazing therapists and we are grateful to have them.

If we make any huge breakthroughs I will post some pictures... after I do a happy dance of course!!

Happy Birthday for sisters who rock!

See these two amazing girls? They are my sisters.... and best friends, wonderful aunts, inspirations to me, and amazing examples of who I hope to be.


This is one of my favorite pictures my dad took of us. I think it was taken around 2003. It is so fun to take a moment and look back.

Now the reason for this post is to wish both of my sisters a Happy Birthday. Today is Chantel's 23rd birthday. I know Amy had her 25th birthday on May 2nd, but I was really busy and never got a post up here like I wanted. So I figured since it was Chantel's birthday anyway, I could just do a Happy Birthday Post to both of them.

Thank you guys for all the love and support you have given to me. It's been a lifelong time of fun, hardships and bonding. This past two years have tested me and my strength to move on. But you guys have been so wonderful to help me through this and continue to offer your support or just someone to talk to. Thank you from the bottom of my heart.

I just want everyone to know how blessed I am to have these two rocks in my life. I hope they both had a good birthday (sorry it is so late Amy!) and know that I love them so much and am so grateful for them.

Wish them a Happy Birthday too!

Thank you girls... you rock!!!!

A Change of Pace......

Today I babysat my nephew and niece for the day. It was alot of fun, and a change of pace for once. Usually I am doing all sorts of things for Josh... like therapy, feedings, phone calls, exercises, ect. So to have the kids come and take a day to just play was nice. My wonderful sister-in-law also sent a crib for Josh. His broke a month or so ago and he has been sleeping in the playpen since. Raeanne had an extra crib so I got that set up today as well. Thanks Raeanne!

Anyway, a few weeks ago my sister-in-law took my niece Aliyah to have her hair done at a place here in Riverdale that specializes in her type of hair. I just had to get some cute pictures of her new look, and then some of the kids as well. Josh is MIA in these because he was asleep.


Here is a before picture of Aliyah. Her hair was pulled up in Poms all the time since it was a very long process to do anything else to it. I was amazed how much Raeanne had to go through each week!

And here she is now! She had the braids done and some extensions put in as well. I just love it to pieces!!! She is sooo adorable anyway, but now she looks more grown up. So cute!!!!

And of course the boys wanted in on picture-taking time. So they goofed off for me. They were so hilarious!


Aren't they all just cute? And they are all so much fun. It's great to have something new to do get my mind of some of the stressful in's and out's of my everyday life. And we love having them come anyway, so it's a double bonus!

Updates and Genetics

I thought I would get an update on here about how Josh is doing since his surgery.

He had a rough few days immediately after coming home from PCMC, but is doing good now. He still has a little problem with vomiting, but I think we have that under control for now...... I hope! His dressing changes are a necessary evil, but are going well too. He whines a bit through them, but no screaming or flailing around. He is such a patient little boy, he continues to amaze me.

Since he had biopsy's done at the same time, we don't have every single result back yet. But we have made a major break-through. After meeting with the feeding clinic a couple days before surgery, we had decided to take him off dairy when he went off food for the hospital stay. Since I was not on the ball like normal, I didn't make it to the Health Foods Store to buy his soy yogurt, pudding, milk ect before the hospital. So when he went back on food after surgery, it was non-dairy, but also no soy as well. Within 48 hours of surgery, his bowels were working normal! Since things had gotten so bad, this was truly amazing to us. And what was even more surprising was that he came home with some Lortab, which is extremely constipating and was still going normal. So at that point we realized we were onto something. So since he has also had a history of an egg problem.. and was off egg as well at this point, we realized we might just have his problem figured out.... 2 y ears to the day of his birth. So he is off Diary, Eggs and Soy and life is good now. Except the fact that we are trying to figure out what in the world to feed him. I have found some organic stuff that he can have, but for the most part, everything he used to eat is now off-limits. But we are so happy! Now if we could just get him to eat stuff by mouth... life would be even better.

Now onto the Genetics appointment. We went in last wednesday to see Dr. Rope, the Geneticist. He was a wonderful doctor and was so thorough and spent a good hour and a half with us in our exam room. Basically it is about what we expected.. meaning we won't have answers for awhile yet. But he did say he is 100% sure Josh has some sort of a Genetic Disorder, but what that is.... we don't know. He is going to start with a Chromosome Test and see what that says. We have a 10% chance that will tell us what we need to know. He looked at Josh for a really long time and told us that he was sure he has seen a picture of a disorder that Josh's facial features fit into. But he hasn't seen one in person. He took several pictures of Josh's head at all angles and is going to do some more research on it. At least we feel like it was a great visit and not a waste of time, and we hope to find some answers so we know what to expect in the future.

Until then..... we will be chuggin along as usual. Thanks to everyone who babysat, brought us dinners, or offered help in anyway when Josh was in the hospital and recovering that first week. We appreciate it soo much. It made things so much easier. We have the best family and friends! We love you guys!

Birthday party!!

Two posts today! We have been busy!

Anyway, today we had a birthday party for Josh and my cousin Kendra.. who turned the big 12. Unfortunatly due to the fact that I had dead batteries in my camera, I didn't get any pictures of Kendra.

We all met early and walked over to the park to watch the Thunderbirds perform at HAFB airshow. Then we came back and had a yummy BBQ.

And here is pictures of Josh actually opening up presents for the first time! Yea for Josh!!!

And here is his lovely dairy, egg and soy free cake. Yum-yum! He liked it and ate some of it. He did very well.

Annual Free Fish Day

Today was Free Fish day in Utah. That means you can go fishing without a license. Scott took the day off work to take Trevor and Jordan up to Loss Creek and fish. Ron, my father-in-law came and drove them all up this morning bright and early. Jeremy, my bro-in-law and my nephew Jarron went up last night and stayed the night. Here is some pictures Scott captured of their fun day .

Airplanes

This weekend is the Air Show for Hill Air Force Base. Since there are both military and civilian acts in the show, we got to go to a little open house today at Ogden airport. Most of the little civilian planes flew in here yesterday to prepare for the Airshow. Since my dad works at Ogden airport, we found out about this little open house. I picked up Chantel and Parker and we went out to see the planes. Some were flying so the kids got to see that as well.

This is a couple of the airplanes inside the hanger.

My dad hard at work..... so this plane could take off and practice his show.

The boys.... and it took several shots to get at least one picture of each of them looking at the camera.

My nephew Parker. He decided since he was in the stroller anyway, he might as well take off his sandles. So funny!

Believe it or not... Trevor took this picture of Josh for me.

This is the B-52 that flew over the airport heading into Hill Air Force Base. It is an old plane, made back in the 50's. It was cool we happened to be there when it arrived.

And this is a couple more planes that will be performing. Trevor took this picture as well. He did a pretty good job of being a photographer!

Happy Birthday Josh!

I guess it is better late than never, right? It has taken me all day to finally get a Happy Birthday Post for Josh.

Since you all know the details of how he is doing, I thought I would just post some pictures of the last two years with our special boy. Enjoy.