The Josh Roller Coaster

Isn't this picture so sweet? I think so! What a miracle he is.

I have decided to call part of my life the "Josh Roller Coaster". It seems like there is never anything smooth sailing with him, it's all up and down.... and then sometimes even upside down.

The last couple days have been very emotionally draining for me. Monday was a chaotic day in which I did not do well at planning out my day. Josh had both his Speech Therapist (Jill) and his Occupational Therapist (Lynda) come. He had a very off day. He has those once in a while, but this was a particularly bad one. Because of that, it instigated a couple deep conversations about Josh and where we are currently.

His Speech Therapist, Jill, is starting to think that Josh's auditory processing is very far behind. We already know that he has a Sensory Processing Disorder, but his auditory is farther behind than the rest. It really explains why he is not really even babbling, let alone talking. He is scared of every noise he hears too. This also explains why when we verbally say something to him without signing, he doesn't 'get' it. This doesn't change anything as far as therapy is concerned, but Jill is going to do some basic hearing tests on him to make sure there isn't fluid in his ears again.

His OT, Lynda, was able to witness something that nobody else besides Scott and I have seen. Josh has these bad shaking/twitching spells going on. They started last december, so it's almost a year later. He is very inconsistent with them so we have not been able to have his neurologist see them, or anyone else. She was concerned and told me she wishes she could figure it out. She also thinks we need to address it again since it has been almost a year and no change. As far as therapy is concerned Josh is doing good with feeding. He is starting to chew more and we are so happy. It still does not address most of his problems, but any progress is good.

Then, I finally had a good talk with his GI doctor about his reflux mostly, and feeding/nutrition concerns. She expressed to me that with Josh's track record of problems she is a little worried about doing the Nissan Procedure (that is where they take the top part of the stomach, wrap it around the esophagus to prevent anything from coming up) since his stomach position is high and he over-reacts and takes much longer than usual to recuperate. So we are going to be as aggressive as possible first with treating the reflux before we go forth with the Nissan. I trust her judgement and know that she is truly thinking of Josh personally, and not just another medical case. So we are going to change one med, add two more and put Josh on continuous feeds. Right now he is on continuous feeds at night, but not during the day. We are going to put him on 24hr feeds for a while and see if his body can tolerate it better and he can gain his weight back he lost and keep gaining to the ideal weight. I have been opposed to the 24hr feeds at first, but after talking to her I can see the benefit with it and I am willing to try it.

Now tonight is Josh's sleep study/EEG down at Primary Children's. I hope that we might find something there that can explain some of his complex issues, but we may not. I just hope we can get to the bottom of everything soon. I'll post more tomorrow when I have more information.

Pictures of the kids!!!!!

A friend of mine contacted me awhile ago about taking pictures of my kids. I have wanted to get pictures done for a long time. So I took her up on her offer and even though it took a few weeks to finally get them done, we did it before Halloween. Thanks Shanda so much! I am so in love with these pictures!!! She did an absolutely amazing job. I had a hard time narrowing it down to post on here. But here are some highlights. I will post more in the coming days. Enjoy. (I sure did!!)









Thanks again Shanda!! I am so happy to have these!

The way we roll.......

This is our night. Usually we don't have two kids going at the same time, but since Daddy was home tonight... score!! I had help!

This is Josh fighting the breathing treatment. He is not a fan.

Look how sad he looks!!! About breaks your heart. At least he is getting better, however slow that may be.

Is the end in sight?

I was going to post an update yesterday and never found the time to get to it. So I finally have some time right now before Trevor gets home from school. Thank goodness!

Trevor is doing much better! He just has lingering asthma problems, but that is all! He saw his doctor again yesterday and we got a new prescription for an inhaler and he took it to school. He will be on preventative breathing treatments for the next several weeks, possibly until March. He was so happy to get back to school and I talked to his teacher an hour ago and he had a good day as well. Can't ask for anything more, huh?

Jordan is also better. He was so excited to go back to school today. This morning he told me he 'missed his girlfriends'. He is such a ladies man! He had a good day and was so happy to see he gets to go on a field trip this week.

Josh is slowly improving. I am not seeing any great improvement from him, but he is not getting worse. I took him to the doctor yesterday as well. We are going to be doing some breathing treatments to help him get rid of the gunk in his lungs/chest for the next week, and then he will also start a preventative breathing treatment plan. He also will be doing it all winter. His doctor is concerned if we don't keep an aggressive plan going, he could end up really sick. His lungs need a chance to heal. We decided yesterday to try one more day without any oral steroids. He had a very bad night in which I was concerned enough that I called back first thing this morning and when the doctor returned my call said he definitely needed to go ahead with the meds. I am just so tired of meds!!!!! But this one is only for 5 days. In other news, Josh has lost almost 2 pounds. We expect weight loss when kids are sick, but it makes me so nervous with Josh. So I am going to up his feeds a little and take him back in two weeks (if not before, LOL) to make sure he is starting to gain it back. I tell you this kid keeps us on our toes!!!

I am feeling much better, just a lingering cough and runny nose. Thank goodness I am on the tail end of this since Josh is not sleeping well and been stressing me a bit.

Thank you everyone for thinking of us! It is so nice to have so many people who care!! I want my mom and dad to know I appreciate all they did for us as well.. bringing me food, meds, whatever we needed. Thanks!!!!

Some fun for the kids

Since the kids didn't get to go trick-or-treating, or do anything for Halloween yesterday, I was going to come up with some fun craft or something. I didn't plan on feeling as bad as I did... so therefore they did not get to do anything. Poor kids!

So today my friend Lorina called to see how our family was doing. She decided to throw together a craft for them to do since they missed out on everything. They have been elated to say the least to have something fun to do. They made a silhouette picture, sucker ghost's and played with play dough. Here are some pictures of them having some fun!

And if you can't tell from Jordan's funny face he was pulling for a picture, they are doing much better.

Now if Josh and I could just get on the upswing... life would be grand! Josh is not having a good day today and is miserable. I hope he turns the corner soon. I don't think I will breathe a sigh of relief until he is all better.

Can it get any worse???

Just a quick post. Josh has RSV now. I ended up taking him to the Urgent Care late last night since his breathing wasn't great and he looked soooo awful. I got it caught early enough that we hope to just do meds and breathing treatments at home. So far today he is not any worse so I 'think' it is working. Poor boy is really sick. He was also tested for H1N1 which came back positive as well. Big surprise.

Today's Project........ done!

Today we had to get Josh's room all set up for night feedings. Of course since it was a big project I woke up with the symptoms of the H1N1. So needless to say this was the ONLY thing I got done. But it is done and so far tonight he is sleeping peacefully.

So I took a couple before pictures of his room. He had toys in there and spent quite a bit of time in there.

Before= Fun room

After= Not so fun room.

Now there is no toys in there (they got put downstairs or in a corner of the living room) and there is all of his feeding stuff.

You can't see his pump and IV pole... it is just to the right of the crib in this picture.

Now, my other big problem with night feedings was keeping our two year old from pulling everything out and 'feeding' the bed or floor. I came across a blog recently of a mom who came up with a good idea to help solve that problem. It was genius I tell you!!! So here is my attempt at the same thing. I cut a small hole in his jammies and sewed the edges up and ran his tube through it. So far so good.

And since I didn't want it hanging out before it was time to actually go to bed... I did this. Scott laughed at how it made him look. I was just glad for out of sight, out of mind!

Other than that big project of the day, we are still chugging along with the flu. Trevor's asthma is still pretty bad, but he is feeling a bit better. I am glad I haven't seemed to get it so bad I can't function. I am soooo thankful that it came on Scott's two days off so I can get more rest.

I will post an update tomorrow. Pray that Josh isn't more sick than he was today.

Update on the kids

I think I have a new hatred for the H1N1. I am stuck home, I can't have anyone come here and I can't go there. And I have three kids wanting me to hold them at the same time. 7 days is not coming fast enough! I say 7 days, cuz that is what the doc at the ER told me to expect for the kids to not feel well. Sigh... it's going to be a long time!

So... Trevor is doing better. He is through the fever, shakes, chills, ect. but the cold part has got a good hold on him. His asthma has gotten pretty bad and I am doing breathing treatments around the clock. He has thrown up a few times from coughing so hard. I feel so bad for him. I hope he feels better soon.

Jordan is on day 2. He has had a high fever with the aches, pains, chills... ect going on. He has had periods of time today he seemed to be a little better, but then it comes back with a vengeance. If it follows the same pattern as Trevor.. he should be slightly better tomorrow.

Josh has been coughing on and off today. That is how it started with both Trevor and Jordan. But..... his could be reflux related too. I don't know for sure. I have been in contact with his GI doctor about his feedings and ect.... for the last couple weeks and she finally called today to 'chat' with me. Josh is not getting enough calories a day anymore, mostly because he does not tolerate the bolus feedings very well anymore. So we are going to start him on continuous night feeds. It has been a pain the rear to get going though. It wasn't as easy as it seems. The crib we are using is Scott's old crib (ours broke several months ago) and it is basically being held together and in place by plywood and his dresser being shoved up against it. In order to have room in his room for the equipment for his night feedings, I need to move the dresser. But if I do.... there goes the crib. So my sister in law has been so awesome and is going to switch us... our toddler bed being stored downstairs, for her crib. My niece is using it in the toddler setting, so they don't need a crib anymore. So we are going to switch around and start night feedings tomorrow night (thanks Raeanne.... you're a lifesavor!). We'll see how this all works out.

So.. that is the update on our family. We will hopefully be swine flu free by next weekend and be able to come out of isolation. Wish us luck!!!!

Spoke too soon!

We have that yucky H1N1 Swine flu at our house. I have done as much as possible to protect our family and we still got it!!! Trevor and Jordan are the one's sick with it as of now, but that will probably change with our luck. Trevor had to go the ER last night for some meds and IV fluids. He is doing slightly better today. Jordan is only on day 1 of it.... so who knows how sick he is going to get.

So we will be not going out of our house for awhile and we don't want anyone to come here. I'll keep you posted on how it's going.

It's that time of year again

for this...................................


Trevor caught a cold this weekend, a very minor one actually. His asthma on the other hand.... got out of control. I kept him home today to take him to the doctor. And so begins the nightly and possibly morning breathing treatments. We are going to start with singulair again and if that doesn't keep it under control we will add a second nebulizer med. It's the most wonderful time of the year! We are officially going to look like a pharmacy with our line-up of meds for the kids. Nice, huh?

Also, Trevor's doctor warned us that asthma and the flu don't mix well. It can be one of the underlying conditions to land him in the hospital if he gets it. So now we have even more reasons to keep the kids out of the crowds. I guess we'll see everyone next spring. LOL!