The way we adapt....

Since Josh got his NG tube it has been hard to bathe him. He is a very excited baby in the tub and makes a massive mess every time. So obviously trying to keep his dressings for the tube dry was a challenge. So i decided to just bathe him in the sink. He is small enough still and I can control the amount of splashing a lot better. He was a little hesitant at first, but tonight seemed to really enjoy it. I had to snap a couple shots since we stopped using the sink for bathing when he was like 5 months old. Poor kid has lost his ability to make a lake on the floor, but he was happy anyway.



Aahhh the way we have learned to adapt to everything. LOL!

What a difference a week makes

I know!! Another day with 2 posts! I am on a roll! LOL!

I just wanted to let you know how Josh is doing. It's been a crazy and wild week and we are still adjusting to the 'new' way of life here.

Josh is doing amazing! It wasn't until he had the NG tube placed and he was getting the nutrition he needs that we have realized how bad things had gotten. His decline was so gradual that there was not one specific event to let us know that he was in some serious need of help. But now that he is getting his calories, he is totally a different boy! Before the tube, he was taking 3 naps a day. I started to wonder recently how normal this was for an almost 22 month old to take 3 naps a day. But he was always tired so that is what he did. Now he is only taking one afternoon nap, and it is so nice! He is so full of energy and excitement. He is so much happier now. He is eating a little better as well. Not alot of intake, but he is more willing to try things now that we don't force any eating on him. He still won't drink, but for now we aren't pushing that. He is not a big fan of his tube, but so far has not messed with it at all. We have Home Health Care now that helps us with the tube and all the supplies, including his new formula. It has been an adjustment to find the best way to transport everything, how to make it all work and to keep his feeding schedule going. We are doing every 2 hours right now since he can't tolerate large amounts of formula at one time because of his reflux. But all in all, it is going well. He is doing so much better that it makes it all worth it. I don't care how much more effort it takes, it is doing what we weren't able to do by mouth and I am feeling very relieved for the first time in months.

So I know you have seen these pictures I am posting, but I just wanted to show you something. The top one was taken the afternoon after his ER visit. Look at his color and the way he looks. Then look at the picture below that. It wast taken two days ago. I was looking at them today and I can't believe the difference!

We still have the issue of reflux going on as well as constipation. I am making some calls tomorrow down to the hospital to talk to his GI doctor. I know that we haven't gotten to the bottom of all his problems, but we are making progress. Thanks for all the love and concern!

Random

My sister Amy, came to my house yesterday to visit. I was able to get a picture of Josh with her. He has been a little more shy around her than he normally would be. But she got here right after his traumatic visit at the ER. So he is scared of people he doesn't know. But I thought it was cute anyway!


And here is my nephew jumping on Josh's bounce and spin Zebra. He LOVED it. He was laughing and smiling, it was so cute!

Cousin Time!

Two post in one day! GO ME!!!

Today we went to the Hill Air Force Base Museum with my sisters and parents. It was a nice little break from everything. The kids had alot of fun. I didn't get many pictures becuase I was keeping track of Jordan, but you get the jist of it.


Isn't she so cute! I love her hat she was wearing. It is adorable!

I don't get pictures of Josh smiling often, so I had to take advantage!

And here is all the kids. We looked so funny with all our strollers.

Better late than never!

My sister, Amy, flew in last saturday night with her two kids, Kyrie and Ryan. We haven't seen them since they moved to Philadelphia last July. It has been sooo awesome to see them and spend time with them. The kids have gotten soo big! Especially Ryan, who wasn't quite 3 months when they moved.

This is Amy and Ryan. He took a couple days to warm up to us, but he is a very happy and smiley baby.

What did I tell you? And the cheeks are adorable too!

Here is little Kyrie. She is actually 3, but only maybe an inch taller than Josh. She is soo tiny and cute and has such a cute, sweet voice.

Jordan is cheesin' it up for the camera, as usual. Crazy kid!

And Trevor playing T-ball, his favorite thing to do. He is pretty good too!

My mom hasn't gotten all the summer stuff out yet, so there wasn't any baby swings up. So Scott gave in and swung on this with Josh to keep him happy.

An update on our fun adventures!

Yep... this is about how I feel too!!!!!!

We made it through the weekend! LOL!!!!

I was on the phone most of the day today with all sorts of people who will now join our chaos at home. I started out with a call to the GI doctor and the Dietician working with Josh through the feeding clinic. I was feeling a little overwhelmed until today when I finally got answers and know where we go from here.

First of all, the NG tube is going to be around for awhile. Soon we will be having a G tube placed, but for now the NG tube is the way to go. For those of you wondering.... the NG tube goes in his nose, down his throat and in his tummy. The G tube is surgically placed directly into the stomach. They don't like to leave the NG tubes in for longer than a few weeks, so that is why we will be going to the G tube after some tests and x-rays are done to determine the best placement.

The Doctor upped the amount of formula a day and got us going with Home Healthcare. They will be coming tomorrow to show me how to replace the NG tube in case he pulls it out, or it is time for a new one. That was relief. At the hospital they told us I would have to go back to the ER to get it put back in. Plus his nurse will keep track of him, and we will get all of our supplies through them for his feedings. They are hoping to change his formula, but we are waiting on an answer if the insurance company will cover the cost.

We also had a feeding pump delivered tonight. It is an interesting contraption. It will do overnight feedings so we don't have to do so much during the day. We aren't positive on when or what we are going to do, we need to get more supplies and get going on our new feeding schedule. But it will be nice to not have to sit around and put formula down his tube all day. So when his nurse comes tomorrow, we'll get going on that.

All in all it has been a crazy and interesting weekend for us. Josh is doing so much better now that he is getting fed well. He is happy, running around all the time and his color looks better. So we are really glad he is better. It may not have been the road we thought we would take, but the end result is the same.... a happy and healthy Josh.

A trip to the ER

We had a trip to the ER at Primary Children's Medical Center last night. Josh is now sporting this lovely thing.........


.... a feeding tube.

In the previous post I was updating about his therapist growing more concerned each week about Josh. Well yesterday morning I wake up to a call from the Feeding Clinic down at Primary's. They had been talking about Josh and taking into consideration what his therapist was concerned about and had a lot of in depth questions. They decided that there needed to be something done about his lack of eating and drinking. So they started off with having me take him to our local hospital to have an x-ray done of his tummy to see if he had anything seriously wrong in his bowels. They also told me they were going to be placing an NG Tube at some point this weekend, which is a feeding tube, as well to get him the hydration he needs. I did the x-ray and waited for a call from the clinic. About 2:45 pm I recieve a call that they found something on the x-ray and we were to take him to the ER at Primary's. So I scramble and get the kids taken care of for the night, (Thank you to everyone.... mom, chan, shari) and Scott rushed home to go with me.

We got down there and had a 3 hour wait in the ER. They finally took him back and when the Dr came in he looked at Josh and said his tummy was distended and hard. He needed a bowel clean out as well as the NG tube. He originally was going to start an IV to get him some hydration, but after talking to the GI doctor on call decided to put the tube in first and get some pedialyte down him to see what happens. He also didn't want to do a bowel clean out if there was an obstruction, so he ordered more in-depth x-rays. In the meantime Josh had the tube put in, which was very traumatic for him... I felt sooo bad. Then the doctor came back in with the results from the x-ray and told us that everywhere there is a possible place for stool, he had it. His colon was full, everything was full. So they did the bowel clean out, another traumatic thing for poor Josh, and about an hour later, he had filled 3 diapers and was calm again. It was very rough on him and he was in pain, but at least it worked (it doesn't always work). So he was suddenly a very happy boy... at 1am! His tummy was about half the size it has been for days and was no longer rock hard. I was amazed at the difference. So after all that we were finally released with instructions on the tube feeding. We will call his regular GI doctor on monday to find out what changes she wants to make, but for the weekend we do a feeding every 2 hours. So far it has been going good and he seems to be used to the tube now.

We don't know how long he will need the tube, but I do know he will need to be intaking the same amount of fluids orally as he does through the tube before they take it out. Part of his problem is his fear of drinking. So we need to work through that. I would suspect he probably will have it for several weeks.

So that was my fun day and night. I NEVER want to do that again! Thanks again to our families' for helping out at the last minute with the boys! We have an amazing family and we couldn't do this without them!

Finally....

I thought I would post an update on Josh and how he is doing with his new therapist. He goes to see Tera every week right now at the Primary Children's Rehab center here in Ogden (thank goodness!!)

I have been very happy with her and she seems to be on the same page as me. His other OT, Lynda is amazing as well and I love her too. But Tera has some pull with PCMC that Lynda didn't have. So FINALLY we might get somewhere with some of the problems we have going on.

So as far as progress is concerned, we have made some finally! He is now able to move around soft meltables (foods that dissolve) in his mouth. He is starting to chew a little, but it's an ineffective chew, but still chewing is good. He is eating more table foods now, such as mashed/baked potatoes, lasagna/spaghetti sauce (minus noodles and meat), cheeto's, graham snacks and stuff like that. I am so excited to see him doing new things!

The hard parts of what is going on is the same old issues. He was on thickened liquids for about a year. When he had the swallow study done they told me all was well and to put him on regular liquids. Since then he has steadily declined in his intake and we are pretty much at a standstill. He is only taking about 6oz of formula a day and 1-2 oz of juice, water, ect. NOT GOOD! His lips have gotten cracked and dried out and he is not wetting many diapers now. His therapist has really been watching his drinking and finally today she thickened his juice for him. He took about 4 oz total while there. So she thinks there is something wrong still. Then when you bring the whole constipation issue into the mix.... she is concerned. I told her alot more of the history behind that and she thinks we aren't going to solve the eating issues without this being dealt with first. So she is going to call the Feeding Clinic and talk to them about doing further testing. Up until lately I have been on the fence on doing more testing. But he is not drinking! This can't go on anymore. So we will be waiting for his therapist to call with a plan of action. Sigh.... it never ends!

Think Green!!

Here are some pictures of the boys in their St. Patricks Day shirts. Trevor also came home with this hat... not sure what it was exactly.

Jordan does have a St. Patricks Day shirt too, but is not wearing it. He decided this morning at 8am to use his shirt and pants as napkins and we had to change his clothes. He knows not to do that (what can I say.. he IS a boy), so he got pinched a couple times for not wearing green. What a goof!

And of course little Josh. He doesn't care about wearing green, but LOVES short sleeves. It is the first time since last fall he has been able to wear them. When I put his shirt on this morning, he walked around looking and touching his arms for like a half hour. Funny!

A better post coming soon!

I will have a better post in the next couple of days with some pictures. But for now I just thought I would pass along that Josh has gotten Strep Throat from Scott. He went in on tuesday for it, and I took Josh into a 24 hr clinic late last night. I am glad I did, because we got on the antibiotics before it even got bad and it won't affect any of our plans. So..... for now it's just a matter of getting meds down him twice a day (on top of the 6 others he takes..). He is a trooper though, happy and pretty active still.

Silly Josh

I have had to wake up my kids a lot since the time change on sunday. Before that they all got up before I ever had to wake them up (yes, they are ALL early risers). So it is a rarity for me to even see them asleep. Today Josh had OT Therapy twice, with just enough time for a nap in between. When I went to wake him up, I found him asleep like this. Even though we were running a tad late, I had to take the picture. He is all kicked back with his hands behind his head (his FAV position) with his feet up. Made me laugh!

8 Years already!

Today is our anniversary. It's been 8 years since we got married. It is hard to believe it's this long already! Time sure flies! Our wedding day was a very cold, wintry day with lot's of gray clouds and a little snow. At least today it is sunny!

I am so glad to have married someone so perfect for me. We balance each other out so well, it's amazing! We have had a roller coaster ride the last few years and it's been wonderful going on that journey with Scott. When we got married, neither one of us every pictured our life going the way it has gone. Raising two kids with special needs has had it's stressful times, but together we have survived everything. We have a wonderful family to show for the last 8 years. I love the way Scott makes me laugh... no matter what is going on. If I didn't have him to keep me laughing I don't know how I would make it through each day. I love him more now than the day we got married. Thank you Scott for a wonderful 8 years. Here's to the future!

I love you Scott!! Happy Anniversary!

Happy Birthday Jordan!!

5 Years ago today we welcomed Jordan into our family. Although he had a rough start to life, he has been a wonderful ray of sunshine and a whole lot of laughs since. I thought it would be fun to post some pictures from then, and also some from his birthday party today. Enjoy!

Blogging Slump

I have been in a blogging slump. I look at everyone's cute blogs every day... with funny stories, cute pictures and fun things going on. And I can't think of much to say. I know that everyone doesn't want to hear about therapy this day or that. Or what kid hit whom..... so I have been waiting for something exciting. And I have come up with zip. Sorry.

But I do have one funny story. This was told to me by my sis Chan. So if I don't get it quite right.. I am so sorry!

She babysat Jordan and Josh for me yesterday so I could get a very much needed hair cut (thanks again Chan!!!). While there she was either doing some laundry, or changing loads or something. Jordan followed her down and had to ask some questions, as usual. I guess he asked her why she had to shut the door to the washer/dryer. She told him it was so when it started going the clothes would not fall out. So he says to her (and again I am trying to remember exactly how she said it) "Chan, I can't wait until I grow up and move out of the house and do my own laundry. I will leave the lid open so my clothes will fly out". What aspirations this kid has. LOL!

The only other exciting thing to happen here is that Josh FINALLY learned how to climb onto our couch. His Physical therapist has been working on this with him since December. It still takes him some time to get all the coordination down to get his legs and feet to work together, but he did it. Now he has discovered a whole new level of trouble. LOL!