Truthful Tuesdays (oops... or wednesday!)

I ran out of time for Truthful Tuesday last night. It was crazy. The end.


Today for Truthful Tuesday I am going to talk about my feelings on raising two special needs kids.

It's hard. Are you surprised? Some days I just want to hide and pretend everything is fine. Not everyday is like that.... just some days. I know we all have good and bad days. I don't think that for the most part I do anything more than any other mom's do, it's just different. Then there are times as I am sitting at the hospital for a dr. appt, test or whatever it may be... and I realize this. Some mom's DON'T know what this is like. Not every mom has spent hours and hours and hours at dr appts, hospital stays, therapy visits. ect. And there are times when I am sitting in a waiting room wishing I was somewhere else. Wishing I was home. Wishing that Josh was not having to go to yet another appt. Just wishing life was not so hard for him.

Do you know what gets me through? Josh. He is amazing. I know I have said that a few times, but I just wish you could see how special this little guy is. He rarely cries while we are doing all these appts and tests. And remember we have to travel an hour to Primary Children's Medical Center. So he has already had to be confined in his carseat for an hour every time we go. Then he is loaded into a stroller where I load his medical bag, his feeding pump backpack and the endless supply of cars we take everywhere. Then it takes another 10 minutes to get to the dr office, clinic, lab ect we are heading for. He then has to sit in his stroller in the waiting room until we get called back. I keep him in the stroller so he doesn't touch all the things many other kids have touched to try to keep him well. I do let him out in the exam rooms, but they are good at sanitizing them. He rarely cries during the time we are in the exam rooms and just plays. Then anywhere from 30-60 minutes later when we finally are done with whatever appt we have, I have to get him dressed, reload everything into the stroller and walk out. Then we have the hour drive home. And that is if we only have one appointment that day. I try to do multiple appts at once if needed to save more trips down to PCMC.

I do almost all these appointments alone. Just me and Josh. Scott is always working now, and I find babysitters for Jordan and Trevor if needed. (It usually is.. LOL) I do like getting to spend time with Josh one-on-one... just wish it was for a different reason. He is such a good kid and I can't wait to see what it in store for him for the future.

I have many more thoughts on this subject, but this is all I can share right now. It's not an easy subject for me to talk about so be patient!

Thankful Thursdays

This week I am thankful for:

-Scott's car tires still being under warranty. We had to get one fixed and one replaced.

-Josh being well and happy. He has been a lot of fun this week.

-Trevor finally going to his first therapy session with his new therapist, Joel.

-Jordan trying to read a book way above his level... and sticking with it.

-Scott. He is the best, and keeps me sane. We just celebrated our 9th anniversary a couple weeks ago. It's hard to believe it's been 9 years. I love this guy!

Truthful Tuesdays

I have decided to start a new thing on my blog. I am going to do "Truthful Tuesdays" and "Thankful Thursdays". They may be short, may be long posts... who knows. I just decided that since I do use my blog as a journal I wanted to get everything on here. Like how I am feeling about things and how thankful I am for the family I have and many blessings. So bear with me and I hope you enjoy it if you want!

Today I am taking Jordan to the dentist for his 6 month checkup. No big deal. I am also taking Josh in for his very first appointment. I am very nervous about how he is going to do. He HATES people bugging his mouth. But this dentist specializes in Special Needs kids so I am assuming they have ways to get everything done. Here's to hoping anyway.

We had a really good day yesterday with Trevor. I think it was the first day in a very long time that I didn't get yelled at, backtalked, bit or hit at all. I really want to find a way to get Trevor to a better place. I know he is struggling so much and so am I. As his mom I want to take all the hardships away and let him experience life as a 'normal' child. But that is not going to happen. We just need to find whatever it is that will help him to succeed.

So that is my thoughts of the day.

Birthdays and Changes

I haven't done a post on Jordan's birthday because we haven't done his birthday parties yet. But since we did an inpromtu party the night of his birthday with Scott's parents.... I have a couple pictures.

First though, is this picture of Trevor. He went on a field trip last week to McKay Dee Hospital. He was really excited about it and came home with a bag of hospital gear. He put it all on and was telling us if we were OK or not. I was surprised he would wear it since he has so many sensory issues. But here he is! Sorry the picture is so dark... Scott took it so I don't know what happened.

And... the birthday boy. He is a whole 6 years old now! I still can't believe how fast he has grown and how old he is already. He had a good birthday with a pizza party and a couple presents from Grandma and Grandpa.

Now these couple pictures of Josh are so amazing. It was about 730 at night and Scott and I were trying to get the kids to clean their room, do reading and get ready for bed. Josh had been bathed already and was just running around the house waiting for his time for bed. I had been yelling into the kids room from the kitchen to clean up the toys. I started to hear the sound of Josh's toys hitting the toys bins... but figured it was Scott cleaning up his toys. A couple minutes later I walked into the living room and found Josh cleaning up his toys!!! I had to document it since he usually requires Scott and I to sit with him and help him. What a sweet boy!!

Now, a couple of posts ago I mentioned one of my favorite sayings. I said I wanted to somehow put it in Josh's room. I did it yesterday and wanted to show you how fun and easy it ended up being. The whole project (including wood and paint) was only 15$. I think I am a good bargain shopper!!

And this is where I hung it in his room.

And my last project of yesterday was elevating Josh's bed. He now sleeps consistently on his pillow (or really close) and his head at the same end of the bed. So I finally was able to do this. I just put some foam pad under that end of the mattress. I am really hoping it helps. He has been having some sleeping issues, both night and naps, and I think it is some breakthrough reflux for some reason. So I did this last night and he did sleep better last night. I don't know if it's a fluke or not yet. But I hope!! Also he has been puking around 10:30-10:45 am every morning for the last 5 days now. Just formula comes up. I have not done anything new or changed anything in our routine so that is why I think he is having some breakthrough reflux. I hope it gets better soon.

Just a close-up on the end I elevated.

I will post more pictures in a couple days when we do birthday parties.

Candid Photo Shoot

Today I decided to pull out the camera to take a picture of what we have done in the corner of our living room. Josh's room is full of medical stuff and there is no room for toys. So we took this corner about 4 months ago and made a small play area for him. We had this old cart (so old... it was used as a nightstand by me when I was 14-17 years old) to put toys on. It was a pain because Josh would take out every single toy to find what he wanted. Many messes. So I finally decided to bite the bullet and buy an organizer. So this is what I was going to take a picture of. And I did... here it is.

But then I decided to get some pictures of Josh too. This is him actually eating!!! That is monumental in itself and worthy of celebrating.

Now I just took some pictures of him. Do you like his hair? He has always had VERY fine hair. Usually it has been shaved due to some reason or another (tests, monitoring head changes, not being able to be in a tub, ect). But now that we FINALLY have all his diagnosis and we are through the worst of the testing.... I finally let his hair grow. It finally got long enough to comb a month or so ago. Scott has been trying to spike his hair for the last week. For some reason I just didn't like it. I tried to like it... but it just wasn't him. So today when he woke up from his nap I thought... mmmm.... I am going to 'hawk the hair. I wasn't sure if it would turn out or not. But I think it did and for some reason it seems more him. I think for some reason it just fits better.

So what is your opinion? I won't do it for church... we will comb it down and nice for that... but I love the fun personality that Josh has... and think this is cute.

Anyone else have anymore hair style ideas?

When Josh is tired....

Today started too early. WAY tooooo early. Trevor was up at 5:30 am. So that means Jordan was up shortly after. What I was the most frustrated about was that Trevor woke up Josh. But that happens on occasion and Josh goes back to sleep. Not today. Trevor thought if he was awake, he should get up and play. He can get Josh out of the crib and before I knew it... Josh was squealing and running around the house.... at 5:52am!!!! UUUGGHHHH!!

Today is tuesday so Josh has group therapy. After we took the kids to school I got him ready for the day and turned on Signing Times for him to watch while I finished getting ready to go. I came back out and found him fast asleep on the couch. So cute!!! This boy does not fall asleep anywhere but bed. Never in a carseat...no matter how tired his is. So I had to take pictures.

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?

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....

Scott...
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.

Melissa.....
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.

Trevor....
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.

Jordan.....
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.

Josh.....
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!

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.