Wednesday, February 24, 2010

The last piece of the puzzle!

Today the last piece of the puzzle fell in place.

As I eluded to in my previous post about Josh... I have some news today.

It was a big appointment day down at Primary Children's. And despite the fact that Josh had therapy this morning, only got a 45 min nap and had surgery two weeks ago..... he was an angel like always. He never once cried or whined. He got agitated when his weight, height, blood pressure ect. was taken but that was it. I love this boy so much!

Anyway, our first appointment was with Dysphasia (Feeding Clinic). Josh was 26.3 pounds today. That puts him in the 5th % for weight. He lost a pound since his surgery so it was explainable and they didn't dwell on it (phew!). His height is 35.5 inches tall so he is in the 23% for that. His head was 46.3cm (0%) but all things considering, that was good. We didn't do any med changes, just some dosing changes. Nothing big there. They are pleased with his progress...but he could still stand some more calories a day. His BMI is 2% so they want to see that up a bit. But nothing huge. We talked about his continuous feeds, and his doctor told me to plan on at least 6 months more of 24/7 feeds. We can re-evaluate at that point. There isn't any way he would grow out of the reflux in that amount of time. So for now we just continue on how we are doing and increase his calories as he can tolerate it. So the summary of that appointment was..... he is doing good, needs a bit more calories, but all in all we are in a great place with him from a medical standpoint.

Now for his neurology. As some of you may or may not know... Josh has had these shaking/twitching/jerking episodes going on for the past 16 months. He has had numerous EEG's and testing to find out what is going on. Nothing so far has shown up. But he has also not been doing the 'episodes' during any of them. So really there was still a big unknown going on. Then we have this sleep study done last november. After that was done, the Sleep Dr. decided to change his sleeping meds to something called Neurontin. Since about sept. I have kept a chart of Josh's 'episode days' for the Neurologist. Well after starting this new medicine I started to notice that he wasn't having his bad days anymore. I thought it was just fluke at first, but they really stopped. Two weeks, three weeks, a month went by... christmas... and he still had not had any more of those episodes. We already had an appt with his Neurologist for today (since oct) so I was very curious to see what he would say. I had done some research and actually read the info that comes with the meds (you know when you pick them up from a pharmacy and it gives you the list of side effects, ect?) and found out that Neurontin is an anti-seizure med. That is what it is really for. So I thought...mmmm..... interesting. So anyway today after going over this with his neurologist, it all fell in place. He was diagnosed with a Seizure Disorder, but unknown cause. Really it means since they have not caught them on EEG's, they don't know what kind he has so it is unknown. Since the meds have stopped them, the dr. doesn't feel it necessary to do further testing. And I have to agree.... since he told me that would mean a few days in the hospital being monitored. No thanks!!!!! (It's RSV season again). So he told me he finally feels like the last piece of the puzzle has fell into place. We finally have all his diagnosis and can move on to maintaining things for him. This is HUGE!!!! For soooo long we have had this 'unknown neurological problem' going on with no name and no way to decide on treatment. It took a process of elimination to finally get here. And I feel like a huge weight is off my shoulders. I can truly move on now and look to the future.

All in all I have to say that Josh is in a good place right now. He is healed from surgery, he hasn't played with his ears in 4 days now, he has been fun, active and doing some good things. I don't care if it takes 12 meds a day to keep his body moving and working. I don't care that I will be lugging around this feeding pump for at least another 6 months (prob a year realistically though). I don't care that he has so many diagnosis you could write a book. I just care that he is happy, healthy and making progress. He may not ever be like other kids, but I believe he has such a special place on this Earth and will change other people lives for good. He is an amazing example of never giving up, keeping a positive attitude and being happy for who he is. And he is only 2 1/2!!!! He has taught me more than I ever could have imagined and I know he will continue to do so. I think one of the greatest little quotes I have read is something I heard from my good friend Jessica (thanks Jess...itwas on your FB page) .....

Some Super Hero's don't wear capes.

I think i want to make a thing for Josh's room that says that. What do you think?

Sunday, February 21, 2010

An overdue Family Update

I was looking back on my blog and realized I hadn't really done a family update. So settle in..... this is how we are doing....

He is working hard and enjoying his job. He started his new position in the Warranty Project with AT&T. He is loving the new hours and the new challenges being one of the first people on this new project entails. He is home at night and weekends now and it has made a TREMENDOUS impact on our family. He is still the Cub Scout Master for our ward and keeps busy with that. With his new hours for work Trevor and Jordan are going to be able to start playing Soccer this spring.

I don't know where to begin! I am as busy as ever, keeping up with three boys. I have been juggling Josh's therapy, Dr. appts, and feeding/med routine. I always think that life will settle down, but it doesn't! I am also the assistant Webelos Leader for our ward so I have weekly activities for scouts. It has been an eye opener for me and I am amazed at how much work it takes. All in all.... I am very happy and busy and enjoying life.

Is doing pretty good considering the challenges we are going through with him. Academically he is doing great. Behaviorally.... he is very challenging. For the last couple years (up until second grade started) he has been doing so well from an autism standpoint...that sometimes we would forget all about the autism. It was like a kid who had a couple autistic tendencies and that was it. Now... well he is doing very classic autism things and it has been hard to watch. I have done as much as I can to help him and to work through it, but it hasn't helped. So in march he will start therapy through Weber Human Services. He will do one on one therapy with a therapist (Joel) and then will also begin a weekly group therapy. I have also spent alot of time researching more things we can do at home and have ordered some things from 'Therapro' to help out here at home (such as schedule boards, responsibility charts, ect.) that are specific for kids with autism. I hope it helps! I also hope that getting him involved with soccer (with scott being involved) we can maybe get him to a better place. I'll keep you posted.

What to say about Jordan? He is the fun loving, smarty pants boy he has always been. He has most of the Kindergarten girls loving him and is quite the ladies man. We could be in trouble with this one! He is doing great in school, learning to read, and writing very well. I am so proud of how well he does with little help from me. It is truly amazing to me to have a child who can just learn things on his own and do so well. Having two kids with special needs kinda gets you in the mode of alot of support, and it's very odd to have a child who is typical and does things on his own. I love how hard he works and how well he does in school. We have NO problems whatsoever with him and it is a nice relief for Scott and I.

Is healing well!!!! It has been 10 days since his surgery and for the most part he is back to normal! It has been a true miracle to have him do so well. I think it is all the prayers everyone offered on his behalf. I am truly humbled by the support he receives on a regular basis. He is such a special spirit and he continues to be an example to me. He overcomes so much and is still such a happy and positive child. (now I am going to get all teary eyed!!) He is still my 'baby' and I love all the hugs and kisses he gives now. He is finally into that stage and it's so fun for us! He is doing good and we enjoy every milestone we get with him... no matter how big or small.

I have some news coming up on Josh as well, but I will wait until after wednesday to post. Josh has a big day down at Primary Children's with follow up appointments. I feel we are very close to a breakthrough on a final diagnosis for Josh and I should be able to share that after his day down there. I'll post when it's done.

Thank you again for the love and support and comments you send me. I really need it some days! I am so grateful for the support system I have with family. And I have some amazing friends that I feel should be family as well. Thank you from the bottom of my heart!

Wednesday, February 17, 2010

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!!!

Sunday, February 14, 2010

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.

Friday, February 12, 2010

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!

Wednesday, February 10, 2010

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!
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.

Saturday, February 6, 2010

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.

Monday, February 1, 2010

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.