Our New Living Room!

This has been a LONG time coming.

But we finally got everything finished, and now have brand new furniture for the first time ever!

It started out as desperately needing a new washer/dryer and bed. We were able to find good deals on the bed, and our bedroom has been done for awhile. We kind of last minute decided to get a new sectional couch for our living room. We have had Scott's parents old couch and loveseat up until now. It was nice and in good condition.... but the loveseat rocks and Josh was soooo unstable on it. It became a safety hazard for him. So all I can say is thank goodness for RC Willey payment plans! We got a KILLER deal on the couch and washer/dryer. So after all that was said and done we used gift cards they gave us to buy a new coffee table and chairside table. So we finally got it all done tonight and here some pictures.

I would post pictures of our new washer/dryer, but figured you've seen one front end loader... you've seen them all. It was a whirlpool Duet set. I am in love with it! I can do laundry in a few hours, not a few days, and Josh's onesies will no longer come out ruined and torn. Yea!!!

Poor boy!

Poor Josh!

He is not feeling good. We expected that. But I still feel so bad for him. He is miserable and wants me to be holding him 24/7.

I just want him to feel better.

Josh is HOME!!!

Well Josh and I survived one more hospital stay. Let me tell you... if I never had to do it again... I would be jumping for joy. I really hate staying overnight. Anyway.... we are home and that is all the matters.

Josh's surgery went well. When his doctor came out to tell me how he did in surgery, he told me his tonsils and adenoids were very large. He is willing to bet that he sleeps better after he heals and the swelling go down. So that was great to hear. Makes me feel a tiny bit better about him having to go through this. His ear tube on his left side was great. His right side was full of infection (he came down with ANOTHER ear infection on monday of this week), so he sucked it all out and put the tubes in. It will be a bit more painful than normal because of that. But all in all there were no bleeding problems and the surgery itself went great.

Here are some pictures of him while down at PCMC.



This is him in Pre-Op. He wasn't happy there, but it only got worse after this unfortunately.

Right after I finally got to come see him after. He had a bit of a hard time coming out of the anesthesia this time.... so it was an hour before they let me see him.

These next pictures are him when we were trying to get him to suck on a Popsicle and take a drink. He was not feeling well (duh) and had been heaving. Poor guy!!!

This is one of the times he fell asleep. I couldn't resist taking this picture. He has had a hard time managing his saliva and so he is drooling non-stop and blowing bubbles when he is asleep. I feel so bad for him.

We had an awesome night nurse and she got me a bigger bed to sleep in last night. But guess who took it over?

I pulled some of his cars out and he was so miserable he just held them. Since he always has his hands behind his back like this... I took a picture of him sleeping while still holding onto his car. Even surgery can't stop him for his cars!

Just some more pictures of him throughout the night. He did not sleep from midnight on.

His Oxygen levels dropped constantly last night. He usually is within 92-97... even when he had his G-tube placement surgery last year. He kept de-sating to 80-82. After a couple minutes he could recover on his own, but that was not normal for him. Then he spiked a fever of 102 so we had to have lab work done and chest x-rays this morning to rule out aspiration from his surgery that would cause pneumonia. Thankfully nothing came back on the x-ray and since he is already on antibiotics for his ears, they let us go. Phew!!!

So far at home as long as we keep him on a good dose of Lortab he is doing alright. He is definitely not feeling well and we expected that. If I get any more pictures of him tomorrow I will post. Thank you everyone for the love, concern and prayers!

Me + Autism = Frustration

Some days I really hate Autism. There... now you know the horrible truth about me.

Trevor has been having such a rough time for the last few months, and things just continue to slide downhill. I know that life with an autistic child can be a roller coaster, and we are on the downhill part....

He is doing OK in school, just some minor behavioral problems... such as not staying on task and following directions.

Home...... well that is where everything falls apart.

He is having some major meltdowns like I haven't seen in months. He is biting, head banging and doing things like that. I just wish life would be easier for him. I feel so bad that I can't take away the problems that make his life so different.

Thankfully I have gotten him in with Weber Human Services to do some individual and group therapy. I hope it works as well as the therapists say. Here's to hoping!

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Also a little side note..... Josh is going in to the hospital tomorrow for his surgery. Ear Tubes, Adenoids and Tonsils out. This could be a tricky recovery. Please keep him in your prayers.

The BIG Reveal!!!!!!!!

After WEEKS of work... our bedroom is finally done!!! We actually had most of it done a few weeks ago, but we were waiting for our mattress set to be delivered. It finally came today.... and so we can officially be done!!!! Here are some photo's for you to enjoy.


Our new KING size bed! This will come in very handy for the many late nights we have with Josh and lack of room when he is with us in bed.

A new Crib!

Josh got a new crib! As you may already know, when he started night feedings in october, my sister-in-law was nice enough to let us trade her a toddler bed we had in our basement for her crib. My niece was using the crib in the toddler bed setting. Well a couple weeks ago we found out that my sister-in-law is expecting twins! So she needs her crib back. Now that Christmas was over we had a little extra money and finally bought Josh a crib. I know most 2 1/2 year olds are not in cribs anymore, but between his developmental delay and the fact that he is on a feeding pump at night... we are keeping him in the crib as long as possible.

So here is a couple pictures of his new bed.

The Josh Roller Coaster.... part 2

See this unbelievably cute and handsome boy???


He needs surgery again. :(


We took Josh to the ENT (Ear, nose and throat) doctor today. Since he caught the swine flu and RSV last October, he has been battling ear infections almost non-stop. I am tired, he is tired and it was really getting old. So it was no surprise his Pediatrician sent us back to the hotel on the hill (aka Primary Childrens) to find out what to do.

Now I am not surprised he needs tubes again. Because when he had them put in the first time I was informed a small percent (like 5%) of kids have to have them put back in a second time because they fall out after a year or so and they still need them. So of COURSE Josh is going to fall into that small percent. Our little fighter goes all out!

But the ENT is also going to take out his adenoids this time around since there is always a chance of a third re-insertion of tubes if he doesn't. Seriously... what % do you think Josh would fall under??? His tonsils will also go if he finds that is the case once he gets in there. Why not?

So with his more complicated history and bad track record of recovery with surgery.... we are going to be staying overnight. yea for me. LOL!

Surgery is scheduled for Feb. 11th. We hope to get it done before he gets another ear infection. We don't want anymore dehydration. Wish us luck! Poor guy!

Trying to find my new' normal'

I am spending this week trying to figure out what my new 'normal' will be and how best to schedule my days. You see, I got a phone call from Scott this past friday that literally uplifted me in ways I have so desperatly needed.

The news???

He is getting a new schedule!!!!!! Right now he leaves for work at 2pm and gets home at 11:30 pm..on mon, tues, and fridays. He leaves for work at 11a and gets home at 8:30p on saturday and sundays. For the past three months he has missed most nights (which are chaos to say the least!), church and all the family parties. It has literally sucked all my energy to be the only one home during the hard times of the day.

So what has me sooo excited???

His new schedule is mon-fri from 8-6. This means he will be home every. single. night. to help me!!! And the whole weekend as well. He will be able to go to church with me, and to all the family functions. Also....except for that brief time he was unemployed... he has worked saturdays for the past 8 years. So to have him off on saturdays is a dream come true.

So now that he will no longer be home during the day... I have had to re-think the way I am doing things, how to schedule everything in I need to, and how to get around not having him home to be with Jordan when I need to do stuff with Josh. But trust me... it is so worth the hassle it is to find babysitting!

So... I totally have felt the HUGEST weight lift off my shoulders and I feel so happy now. I have been praying for a few weeks now for something to happen so I could make it through the next few months until we get Trevor some help. I have already gotten an initial appoinment for Trevor's youth intake, but it will take time to get things going.

So like I said, I am trying to find my new 'normal', but it's a good thing!!!

Update and Test Results.

Now that the weekend is over and I have kind of (ha-ha) caught up on my sleep I am now getting the blog updated from our latest crisis.

Josh went in and saw his pediatrician yesterday morning. He still has a faint heart murmur, but he thinks it just needs some time to go away. Whew! Good news there! He also checked his ears... which started this whole thing last week..... and he had a double ear infection. Not only is the one that was on the verge at the ER infected now, but the one that was fine is now more infected and inflamed than the other. Poor kid!! So we got an appointment with a new ENT down at Primary Children's and we go next week. I am pretty sure we are looking at tubes again. Sigh...... I am soooo done with ear problems!!! The doctor also had no ideas as to why he got dehydrated other than the fact that his body does not react to illness...even simple colds well and we just need to keep him as healthy as possible. So when we go to the ENT next week, I'll do another update then.

Now for Josh's ELAP test results. This is a developmental test that Early Intervention does to see where your child is at. You have to do them yearly, but Josh has actually had them done every 6 months. So here is his latest results.

Keep in mind that Josh is 31 months old.

Gross Motor = 15 months
Fine Motor = 18 months
Cognitive = 18 months
Language = 13 months
Self Help = 16 months
Social/Emotional = 24 months

His last testing was done in May of 09' and here is how much farther he has come. Gross motor remained the same. Fine motor gained 4 months. Cognitive gained 6 months. Language gained 5 months. Self Help gained 4 months. Social Emotional gained 6 months.

As you can see his biggest hurdle is still speech/language. Although he did gain, I am still a little worried of the fact that his gross motor has remained the same. Not looking so good neurologically speaking. It is sooo good to know we have an appt with his neurologist next month.

All in all he is growing and improving and that is the bottom line of what is important to me. He tries so hard at everything he does and I am proud of what he has done. He is still an amazing child and I am in awe of all he has overcome already.

To the ER..... again.

I think I jinxed myself. Two days ago I remember thinking that it was so nice that Josh had no doctor appointments this month, only therapy. Oh why do I say or think these things?

So anyway... I had to take Josh to Primary Children's ER last night. I really never envisioned we were going to end up there. Here is the reason. Two weeks ago or so, Josh started this clear runny nose. There were no other symptoms that were concerning or out of the ordinary to me. On thursday I started noticing him playing with his ears. It has never failed for him to get an ear infection with a runny nose. So friday afternoon I notice he is playing with it still but at that point I knew we could not get into his doctor until monday. I figured I could use his ear drops and ibuprofen until then.

Well yesterday morning rolls around. I get him up at 8 and get him ready for the bath. I notice his diaper is not as full as normal, but didn't really think much else of it. I got busy getting Trevor and Jordan ready to go tubing with my sister-in-law and then going grocery shopping. Around 2:45 I realize I have not changed his diaper, nor is it leaking which it should be. So I lay him down to change him and the diaper in bone dry. No pee whatsoever. Now he is on continuous feeds... so he soaks diapers in a couple hours. I call my mom at work to get her opinion on whether I should wait or take him to Wee Care to be seen. She suggests calling and asking. I do. They want to see him (big surprise). I make an appointment for 6pm. I get going on some laundry and the phone rings... a doctor from Wee Care calling. After talking to me about Josh, his history and what is going on he tells me I need to take him to the ER. He said that what is going on with him is above what they can do for him. So I sit for a few minutes wondering if it is REALLY warranted to take him in. Because of his special medical needs I can only take him to Primary Children's.. an hour away. I call a couple people to ask what they would do (thanks Jessica and Raeanne for listening to me) and get packed up and head out.

I check before I leave, the second I get there, and about every 10 minutes after that for some pee. Nothing. I am worried at this point, but figure he probably has a UTI or something like that. After many hours of waiting they run some labs, cath him and get some urine and we wait some more. The PA we had when we first arrived was not taking this serious. I tried to tell her that at this point this kid has not peed in 10 hours and his feedings have not stopped. At once point she said... 'well I guess I better ask the obvious... did you forget to turn his pump on?". I was a little offended. Um... no and I have added formula every 4 hours when the bag is empty just like normal. I call my mom to check in and she tells me I should ask for a 2nd opinion. I decide that the next time I get the PA in I was going to do just that. Well about an hour after they told me the results of his labs/urine would be in (love the ER waiting time) the ER attending came in. She just informed me that she looked over his file and decided she better take it over. So she does another exam... much more thorough by the way.... and informs me that he has a heart murmur and his bladder is empty. So what I was thinking was a bladder problem was dehydration. She said the labs showed signs of it, but it is not severe. She also listened to his heart (the PA did not) and detected a heart murmur and that tells her something is not right. So since we can't increase his G-tube fluids because of his reflux, he got an IV and some hydration that way. I think every doctor there last night got involved because nobody could figure out how a child with a G-tube and continuous fluids got dehydrated. I just told them... welcome to my life with Josh. He is always stumping the doctors. He also did have a bulging ear drum but they decided to not treat that and have us follow up with his doctor tomorrow morning.

So the summary of all that? Even a slight cold can make Josh take a turn for the worse with no warning. So they suggested I keep him home and away from groups. Oh... wait I already do that. They had no other suggestions for keeping him well since we already do everything. They just told me to keep an eye out of his urine output today and take him in to have him checked tomorrow and to follow up with his GI doctor. Even though he is doing better today... the reason behind how he got dehydrated in the first place is still a mystery. Oh good... I was wondering what I was going to do in my spare time this week. LOL.