Some good, some bad..... you take what you can get!

For those of you who follow me on Facebook you already know how excited I was for school to start. I promise I am going to be posting pictures of the boys when Jordan starts next week.

Now, for an update on Josh. He had his appointment with the Feeding Clinic today down at Primary's. We haven't been to the Feeding Clinic since a couple days before his initial surgery to have the feeding tube put it. We have made several trips down there, but it has been three months since we met with the whole team.

So... this is where he stands. He currently weighs 25lb even. He is 35 inches tall!!! I knew he was growing, but sheesh! So although he has gained from last appointment, he still has some gaining to do for them to be happy. For his height, 28lb is ideal. But whatever we take what we can get. His BMI is 2% so that reflects that he has not much fat on him at all. So they are increasing the amount of formula again to add some extra calories.

His reflux has gotten worse since his tube was put in. It can be one of two things. When the G-tube was placed, it did change the position of the stomach, and 2% of kids have reflux worse, post surgery. Also we switched his reflux meds when all this happened and they may not be working as well. So we have added ANOTHER med to see if that helps. He also is not sleeping well at all right now, with 45-60 min stretches for the norm. His GI doctor hopes it is reflux related and we can solve that problem fast. If not, it will be another new doctor that deals with sleep disorders and more tests. Yikes!

His constipation issues are coming back, but not as bad as they were before we took him off Milk, Eggs and Soy. The doctor is really at a loss as to what to do next. So we are going to add 3 more meds for that and see what we can do. The next step is to take him off all food and slowly add one thing at a time to see if it is food related. Both his Dr. and I agree it is likely a food allergy since when he has been sick and on tube-feeds only, he goes back to normal. So we'll see what happens.

The last thing I got 'lectured' on was his immune system and the precautions we are going to need to take this winter/illness season. She warned me that with the problems he has, coupled with his G-tube and problems with it, we need to treat him like a immunocompromised child. He does have a history of catching everything as well... so this isn't too much of a surprise. A simple cold can land him at PCMC this winter, so we are going to follow through with all her suggestions. If you live close enough to visit... be prepared to be met at the door with hand sanitizer from now on. The boys will also have to be more careful as well.

So that is about it for Josh. He is doing good and he is doing some new things lately. He is signing even more than ever and is a happy go-lucky boy again. We really missed that this summer with all his problems. We are just adjusting to his new feeding routines, and the kids school schedules. Wish us luck!!!

Forgetful Mommy!

I am forgetful. I will admit it.... what mom isn't? I am usually not forgetful about making sure Josh's dresser drawers are locked. We keep his extra med supplies for his G-tube stuff in his top drawer. If left unlocked he can open it from the crib. This morning I woke up and heard him just happily giggling and talking to himself. I am thinking this is great... it can buy me another 5 min or so. Mmmm.... bet I won't make that choice again!

This is what I woke up to see. And boy was he happy about his accomplishment!

Why?

Trevor asked me to take these pictures of his the other day. He makes me laugh at times when he randomly asks for pictures to be taken. But whatever, he is a funny kid. So here he is all decked out ready to go shopping with me. It is so hard to believe he is starting 2nd grade a week from today. Where did my baby go?

2 Weeks

Just thought I would give a quick update on Josh. After two weeks of screaming through feedings, many dressing changes a day, lot's of sleepless nights, a doctor' appt, and many phone calls later.... he should be on the upswing!

I probably should just give you a little explanation. Josh had his button put in 2 weeks ago. Since then he has had alot of pain and problems with his G-tube site. I did all the stuff I have been told and couldn't figure out what was wrong. So after a weekend of horror here, I took him first thing monday morning into his pediatrician to find out why his G-tube site is so sore, red and looks awful. He looked at it and said he had never seen anything like it. So he called down to Primary Children's and was able to talk to Josh's GI doctor. She told him she was heading out of town and to call in a heavy duty barrier cream and call the 'ostomy' nurses at PCMC. So I called down on tuesday to talk to the nurses. After an hour of talking to several of them it was decided he needed to be seen by a GI doctor. Well his regular one had just left out of town. So Dr. Pohl... a brand new doctor at PCMC.. agreed to see Josh today in between surgeries. It was so great to get it so fast.

So....the diagnosis? He has a staff infection. Nice huh? Poor kid. He has been bleeding alot since yesterday and it just looks so sore. I feel bad. But he got some antibiotics and some heavy duty cream and should be feeling much better in 48 hours. We hope anyway! The bad news is that where the skin has started to recede from the G-tube hole... is going to just cover over with scar tissue. So instead of a scar the size of the G-tube hole, his scar will be at least the size of a quarter. But that is a small price to pay I guess. At least it is on his stomach.

So that is the news. Thank you for your concern and love. Josh just never can have it smooth sailing! He is such a trooper though and did great today. He really does not like going to the hospital (can you blame him??!!) but he didn't cry or whine once today. I am so proud of him!

Opinions Please?????!!!!!!!!

So I want opinions. Jordan insisted I shave his head at the first of the summer. I did, but informed him I wanted him to grow his hair for school. So we have been letting it grow all summer and it finally is long enough that he doesn't look bald. Well this morning he decided to be a stinker and shave a small area (like the size of a grape) in his hair. If I just comb it over like HE likes it to be done, I can't cover the spot. So I got some hair gel out and tried to do the messy look. I didn't get it to turn out, so I mohawked it. Scott LOVES it and thinks we should do it all the time. I honestly don't care..... just as long as I don't have to cut his hair, and it looks decent. So what is your opinion? Do you think it looks OK, or would you never let your kid out of the house looking like this? Please be honest... I won't hold it against you!!! I want honest opinions!

I know his hair isn't really long enough yet, but it will grow.

Playing Catch-up

I would love to be so on the ball I had pictures downloaded and ready to go for this post. But..... life doesn't always work out that way. So there will be pictures soon........

We haven't been busy as in going out and about, but we have been busy here at home.

My sister, Amy, and her family have been here from Philly visiting. It has been so wonderful to see her and spend family time together. Makes me miss her so much more. Today we went to the zoo with all of us siblings, families' and my parents. It was so fun to see all the kids get excited over the animals and just be together. After a quick downtime for us all to rest, we went out to dinner. My dad decided to take us all to El Matador here in Ogden since my sister and brother in law LOVE it and miss it. It was so fun to just be together with no worries and eat yummy food. Thanks Dad... since I know you do read this! LOL!

Other than that we have just been doing the same old things. The kids have been swimming a few times at our pool and getting more brave in the water. It has been great to see how much Jordan has changed in the water this summer. Love it!

Josh has kept me pretty much busy almost 24/7 the last week. His surgery went well of course, but recovery...not so much. I just figured it was a fast procedure, with nothing new as far as incisions or anything, so he would bounce back. It has been just as rough as the last time. He has been hurting a LOT more than I thought he would, and is just in general more clingy and whiny. His surgery site got pretty inflamed and red after surgery and now we have a granulation problem on top of that (granulation is an overgrowth of scar tissue that hinders healing and bleeds a lot). We have been doing the cream several times a day and I think (knock on wood) we have turned the corner on this one. I just want him to feel better so he sleeps longer than an hour at a time at night. But it still is nice to not have that huge PEG tube taped to his stomach, so I am grateful still.

Scott is still looking for a job. He has probably turned in or sent out his resume 150 times by now. He spends quite a bit of time every day looking for a job. It's been 6 weeks now and he is still looking just as hard as he did 6 weeks ago. I am proud of how hard he is trying. I know that the right thing will come along, we just have to be patient. This economy is really rough on all of us.

We are now getting into the swing of back to school time. We will be starting our 'school' schedule next week to get Trevor ready to go. I am excited for this year coming up with all the new changes. I am also realizing I am going to be more busy than last school year. But it's OK, I am getting pretty good at organizing with a calendar!

So that is the latest from here. I will post pictures of the last week when I get some more time.

What a day!

Today we got up bright and early and headed down to Primary Children's to have Josh's Mickey Mini put in. LOL!!! Seriously it is called a mickey button and it is a mini one since he is small. LOL! OK.. so I am a weee bit tired tonight. But anyway....

We have been waiting for this day, partly to finally have it done, and because we were having enough problems with his temporary PEG tube to make anyone want to scream.

So here is our day...

This is Josh in the pre-op waiting room in his lovely hospital issued jammies. He is not happy, but if you look hard enough you can see the bubbles Scott was blowing to make him happy.

And one picture of him in the 2nd pre-op waiting room. This was after the IV was put in... and he only got off our laps this one time.

That was all the pictures from the hospital. We took him back to his OR room and was able to stay with him until he was so drugged he didn't know we left. It was kinda funny to see him so loopy. He was done in like 20 minutes and then we went back to recovery with him. He had to have Zofran again because of nausea, but other than that he couldn't get out of there fast enough. It was nice to be able to leave and not stay!

He had a couple visitors tonight to see how he was doing. Of course his grandpa came. My dad comes after every little procedure or surgery he has had to cheer him up. No wonder he loves his grandpa so much! He also likes to take his hat off and wear it on his head for a few seconds. It's a game they have been playing together for as long as I can remember. Thanks dad for coming to see him!

He finally got to take a bath!! Since his site was healing, he has only had his usual wipe down daily. Before the PEG tube, he was bathed in the sink since March because of his NG tube. So this was his first bath in the bathtub since March 22. Even though he looks drugged... he was so happy!!! Loved the smiles we got!

And finally... I am posting a before picture of what his PEG tube looked like.....

And this is his MIC mini Button. Now you can see why we were so excited to get it put in finally! He is going to wear a small dressing under it, but his Dr. showed us how to do it without taping it to his skin. You can see the rash and what his skin looks like now from the last 2 months of tape being torn off daily.

We are so excited to be done with this!!! It has been a long road, one that is not over yet, but at least we are through the healing stage. He is sore and bleeding a bit from the tube change, but this is the only time that will happen. From now on when we change the button (every 3-4 months) it will just be fast and no hurting on his part. Yea for Josh!!!

Photo Shoot

I took some pictures tonight with my camera in black and white. I have wanted to get a cute picture of my kids in black and white for soooo long. My camera is not a great camera, so I have never even tried. So tonight while Josh was in a playful mood I thought he could be the guinea pig. They aren't what I was going for, but maybe taking them outside in really good light will help. I am going to try that with all three kids as soon as I can. Let me know what you think.

A Single Mom?

As most of you already know I have been a single mommy these past couple days. Scott left on wed. morning to take Trevor and Jordan on the annual Father and Sons camping trip with his family. I have been on my own with just Josh for 3 full days and part of today as well.

I didn't have any expectations really, other than enjoying the fact that I didn't have to cook while they were gone, and it would be quieter. And it has been pure bliss to not have to cook anything, and the quiet has been just what I needed. Josh is not really a noisy child, so it truly has been quiet here.

Now... the things I didn't expect. Josh is alot of work! I think I have been so busy this summer just doing all sorts of things and going a million miles a minute, I didn't really think about what I was doing for whom, when. You know how it goes. I FELT like I was doing alot for Trevor and Jordan, but I guess they really are pretty self sufficient. Josh is not. And I tended my nephew Parker for a few hours on thursday. He is almost 5 months older than Josh. He was so easy! He played with toys the whole time, I didn't have to keep a CONSTANT eye on him like I have to with Josh. He sits and eats his own food, so other than making sure he is fine, I just had to put it on a plate and give it to him. It was a little bit of an eye opening experience for me. I know that Josh is an easy going kid and I love that. But he is alot of work and keeps me busy. I have been so much busier with little things than I thought I was going to be. I just thought it was interesting realization. I do miss Scott and that help he provides. I can't wait to see them this afternoon!

The Christensen Family Night Life!!!!

See this?





Every night my counter becomes a bath/medical table. Since I have had a few questions on how we take care of Josh's G-tube site, and what the care is on a daily basis... I thought I would photograph it for you and let you see for yourself. Don't worry... I didn't include any close ups of the hole in his tummy for your viewing pleasure.



Here is a closer picture of what I get all lined up before we get Josh up here. There is a bowl of soapy water for his wipe down (he has to be sponge-bathed right now), Q-tips for cleaning his site, a small med dispenser with soapy water for that, two different creams for his incision, three different sizes of Mefix tape, dressing sponges, and his nightly meds.

Here we go...... the wipe down/bath. He loves to play with the wash-rag when I let him. It depends on how much of a hurry we are in. But he does get to have some fun.

Then we give his meds. His tube can sometimes shoot stuff out of the port (opening) that the food goes in... so this way if it does go everywhere we will already be taking off his dressing.

Daddy is cleaning his tube site. He doesn't seem to mind it all that much now, but still watches with curiosity.

The lovely re-taping of the tube. We do have it down pretty fast. I am a little faster than Scott since I do it almost every time, but we both have gotten faster at it.

Some times he even helps! He is holding the tube upright while Scott finishes the taping around the tube. He has been more into pulling on it lately so we haven't let him touch it as much.

This is usually how he kicks back every night while we do this. I am telling you, this kid is an amazing little boy! He just sits there and relaxes while we do this. What 2 year old would really hold still? We are thankful every day for his patience and easy-going personality.

And finally..... this is what he waits for. Scott will pull him off the counter and swing him around a few times before laying him down to get his jammies on. He just gets a big grin on his face the second I tell him he is all done. Then he looks for Scott and waits with his arms up for daddy to swing him around. It's become a little routine we do and he loves it. Anything we can do to make this experience is good.

So there you have it..... our nightly routine. I won't lie to you and say I love it. Believe me, some nights I wish we could just get him dressed, or throw him in the tub, but that will come in time. For the most part I don't mind it all that much, but I am looking forward to his MIC button being put in so we can bathe him normally.