Sunday, May 31, 2009

8 weeks can be a really long time...

So after being home from the hospital for a little more than 24 hours, I have found an interesting challenge. Josh's tube has to be taped going straight out of his tummy so the site heals correctly. This tube will be replaced in 8 weeks when he is healed. But until then... we have this lovely affect going on with his clothes.....

It sticks out a good 3-4 inches... and so I have to make sure his clothes stretch over it but not tightly. Sigh... this could be a VERY interesting 8 weeks. I will be glad to get the permanent MIC button put in then.

Just click on the picture.. you'll see how far out it goes. Nice, huh?

Saturday, May 30, 2009

Josh's surgery

Well we are home and in one peice! I don't think Josh or I have ever been as glad to be home as we are today. It has been a long two days.

We arrived at the hospital and they were not only running on time, but early! So he was taken back quickly so we didn't have to do too much sitting and waiting with Josh. They let me take him back and hold him while they gassed him with a mask. After he was already out they did his IV, drew his blood and took his NG tube off. So he didn't feel any of that... thank goodness.

His G-tube placement went well and Dr. O'Gorman (his GI doc) did an upper GI Endoscopy as well. She found that all that was normal, but took biopsy's as well. Then a pediatric surgeon came and did the full thickness colon biopsy. He won't have those results as well until next week. But visually everything in the upper GI looked OK. Nothing to explain his problems yet.

So here is some pictures of him right after surgery. He did very well waking up. He was soo quiet, he did not make a PEEP for at least an hour.

This was taken some time during the night. He had a rough night. He ran a slight fever and was in quite a bit of pain. He had to have several boosts of pain meds through his IV. He is such a laid back kid that we knew he had to be hurting pretty bad to be like he was. It was a very long night and he didn't sleep much.

Then this morning my parents came and were able to distract him very well. He got a new car and was quite happy to play with them. We spent the morning getting all his G-tube teaching done and I learned how to actually do the dressing changes. It was not fun, but had to be done.

And here he is home at least. He was so happy to be home, I am not sure he knew what to think. I am so glad to have it over with.

Scott took this picture of his G-tube. If you are curious about it, you can click on it and see it larger. He will go back in 8 weeks after the site has healed and have what is called a MIC button placed. I post pictures of that when it happens. For now he just has this huge tube sticking up in the way. It could be a fun 8 weeks!

We did at least get all his blood work results back before leaving today. Everything there was normal. So we can rule out some things that could be wrong, but we still don't know what is wrong. His GI doctor is running out of ideas, so we hope the biopsy's are more helpful. And he also has his appt this next wednesday with the Genetics department. We hope to find some answers soon. Thank you everyone for thinking of us!!

Wednesday, May 27, 2009

The F.U.N. clinic (or not)

Today we had a follow up appt with the feeding clinic down at PCMC. It is actually called the Follow Up Nutrition clinic, aka the FUN clinic. But Josh really does not think it is a FUN clinic, LOL! He screamed like you would think he was dying.... all for his weight and heighth. Nice huh? He has had a recent drop in weight, but overall he is doing great as far as nutrition. His constipation is getting worse. So after talking to his GI doctor we are going to try to get to the bottom of it. While he is already under anesthesia for his surgery, a surgeon is going to come and do a full biopsy of his colon. Then the GI doctor will do some biopsy's of his upper GI area as well. He will also have another blood work up done and she'll test for some more stuff there. He'll have his G-tube placed and go home the next day.... hopefully with some answers. We are also going to take him off dairy again and see if that, with the new formula will help at all too.

It's never an easy answer or solution with Josh. I am just glad we can time all these procedures at the same time. I will keep you posted about it all. I will post some pictures and an update on his surgery on Saturday night. Wish us all luck!

Tuesday, May 26, 2009

Our little entertainer.....

Tonight was our last end-of-school program...Jordan's preschool graduation. We watched a little program and then had a potluck BBQ. I have to say that Jordan has changed so much from last year's program. He was not shy and was hamming it up like I have never seen. Scott and I were in shock at how much this kid can boogie! He has quite the dance moves I have to say. It was soo funny! We even had a couple people tell us that they couldn't believe how much he hammed it up. Nice, huh? We didn't take our camcorder (due to the fact that I forgot to charge the battery) so we only got pictures. But you can see kind of what he was doing.

Here he is playing a 'guitar'. It was soooo hilarious, I wish we had it on video!

And here is Jordan with Miss Melodee his teacher. She was awesome and ran a great program! Jordan learned all sorts of things this year... and is ahead of his age group thanks to her.

And this picture has nothing to do with the preschool program. But while we were there Trevor had a rough time as usual and complained at the end of being cold. He wanted to wrap up in a blanket to get away. So when we left he took the blanket we sat on and buried himself in it for the ride home. After we got home he got his jammies on and was still complaining about being cold and wanting to 'hide' in a blanket. A few minutes later I was going around gathering the garbages and I found him here. I normally don't take pictures of the kids on the toilet, but you can see why I did. It was just too funny for words! Good thing I scrubbed the toilet today, huh?

Sunday, May 24, 2009

Memorial Day

Since Scott is working tomorrow on Memorial Day, we decided to decorate graves today. We tried to explain to the kids what was going on and why we do what we do. They probably would have enjoyed it more if it hadn't been raining. Sigh... oh well you do what you gotta do.

Here is some pictures for those family members who don't live close.

Friday, May 22, 2009

Just hangin' around...

This is what Josh did last night. He found himself a new place to sit. He was so proud of himself for figuring out how to climb in there. Fun, huh?

And this is what I did today. I babysat my friend Lorina's little girl that is about to turn 3 months old. Since Lorina took Jordan to the Dinasour park, I offered to watch her baby, Alett. It's fun to have a baby around... but I am glad I don't have one full time. I couldn't do it. But she is adorable!

Wednesday, May 20, 2009

My new best friend!

Meet my new best friend. It's name is Kangaroo Joey. This is the Feeding Pump we were given when Josh first had his NG tube placed. We thought it was useless and never even used it.

Then last night Scott and I attended the G-tube class down at Primary Children's. We learned a TON and now feel ready for this next step. We also learned that we were not feeding Josh correctly and probably have caused him more tummy aches. Alas... the ER didn't show us anything, we just 'winged' it by ourselves. So after a wonderful nurse that spent two hours teaching Scott and I about feedings... I decided to come home and wheel out the pump and attempt to figure it out. You see when the Healthcare Company delivered it two months ago... I got a fast run-through on the machine and was left with a big instruction booklet. The problem was that it included every language BUT english. So after a bit of trial and error last night, I finally figured it out. So this morning I gave it it a whirl. It took a few minutes to get the formula made and the pump all primed, but then it was good to go. Josh was happy in the high chair, and I was able to do other things for those 25 minutes.
So now I amwondering why I wasn't doing this all along (um.. maybe cuz NOBODY told us the correct way to feed???) since I can just hook him up and away I go. I am in pure heaven!!!

Josh sat and watched Baby Signing Times and was not even aware of what was going on. I am just so excited to be able to get more done!! Whatever am I going to do with myself now??

Trevor's Award Assembly

Today was the first grade awards assembly. I was the only one able to attend since Scott was working. I didn't get any good pictures of him standing on the stage since it was too crowded. But he got an award for the Super reading and Math, and then a reading medal. He was very proud of himself. Way to go Trevor!!!

Monday, May 18, 2009

When the boys are left alone....

First of all I just want to give an update. Josh will have surgery to get his G-Tube placed on May 29th, next friday. He will be at Primary Children's Medical Center at least one night. We'll keep you updated.

Now onto what my kids did tonight.

I sent Trevor and Jordan downstairs after dinner to play. 10 minutes later Jordan comes up screaming that Trevor hit him with a golf club. Oh my.... isn't it pretty?

Saturday, May 16, 2009

Birthday, birthday and more birthday!

Today we went to Raeanne and Jeremy's (Scott's sister) house for a birthday party for both of her kids and Josh's. Since all their birthday's fall in a 4 week period, we have started combining to make things easier. It was a lot of fun as usual and the kids had a blast. Thank you Raeanne for having us all over!

My neice and Nephew got a Trampoline for their birthdays. They had just set it up when we arrived and the kids were in heaven. My bro-in-law did try to take Josh up there, but he didn't like the bouncing.

So here is the kids having some fun.

And Josh was having fun with their dog Gruff. He is an old dog and can't hear, but Josh was very amused by him.
And my brother-in-law got on the trampoline and bounced the kids really high, and of course they loved it.

This is Raeanne's sister-in-law teaching all the kids how to play 'crack the egg'. They thought it was so fun!

And Scott's mom even got on and jumped with my niece for awhile. Scott had to snap some shots of that!

And they got the 4-wheelers out for a bit and the kids all took turns riding them. Trevor was loving it and they went really fast and he didn't care. He definantly has some speed demon in him!

And the birthday kids opening presents.

And our cute little Josh. He was a little overwhelmed today and wasn't sure what was going on.

And FINALLY!!! Josh figured out kind of how to open presents! He at least attempted it for the first time. He was still a little overwhelmed, but at least tried to open each present. Thank goodness!

My sister-in-law made this cute castle cake, but our camera ran out of batteries before I could get a picture. She also made the birthday kids their own 'Sand' Cake in little sand buckets. It was soo adorable!! Thanks Raeanne, it was amazing!

Friday, May 15, 2009

Finally we know!!!

I have been waiting to write about what is going on with Josh until I had all the answers.

First of all, his upper GI test came back good, just showing the severe reflux with the NG tube in. The doctor hasn't been sure about whether or not to have him have a Nissan procedure done. That is where they go in and surgically close off the valve so nothing can come up anymore. After talking to a couple other GI doctor's and then to me today, we finally have a plan. With the problems he is having with the NG tube she wants to get the G tube placed as soon as possible. So we are going to go ahead with that and up his meds for reflux and see how he does after the site heals. His GI doctor can do the G tube surgery, but a surgeon has to do the Nissan surgery. Since that can take several weeks, we both agreed it would be better to wait and see if things get better with the NG tube gone. I don't want to put him through anymore than he has to be, so I feel pretty good about this. So she is going to get his surgery squeezed in the schedule sometime in the next couple weeks. Scott and I are going down to PCMC to take a class on the G tube and how to deal with it next week. Then we'll be all set.

Josh's neurology appt went well. He was officially diagnosed with Dyspraxia, a motor planning disorder. He has several other diagnosis as well and the Dr. is doing a formal 'on paper' document for everything. We have a great neurologist! We love him! He did remind me that even though most kids with SID and the problems associated with it eventually get better (not perfect), we are forgetting his Microcephaly diagnosis and how much that plays a part in all this. All of his problems stem from Microcephaly and therefore compound the issue. His head size is still below the bottem curve, but he is doing OK. He just gently reminded me that Josh will never 'catch up' or be 'normal'. He will always have problems and need extra support and medical help. But we are doing the best possible for him and he has some great therapists that are on top of everything. We hope his appt with the Genetics doctor on June 3rd will shed some light.

So that is where we are at. The only other change we have had is a new formula. He was put on something called "Elecare" that is the most hypoallergenic you can get. The GI doctor and dietician is still convinced there is something else going on with him and now that the insurance is helping cover the expense (since it is going through a tube) we can finally afford it. We'll see how well this goes. Keep checking back for more updates!!

Monday, May 11, 2009

One more test down..

Well we made it through one more test today. Josh had an upper GI Barium Series done. He did as good as can be expected. They got him to drink enough by mouth to get the esophogus part done and then put the rest through the tube. The only thing I know for sure is that his reflux is worse than we thought. The Radiologist did part of the test with his NG tube in place and then part with it out of place. He refluxed every time with the tube in place and half the time with it out. So I thought we were probably going to be able to ween him off the meds and now I find out he is not getting any better as far as the reflux is concerned. Even though we don't see anything coming out of his mouth, it is still causing some pain. So that is probably some of the reason he isn't sleeping well. Sigh.... what else is new, huh?

The hardest part was that we ended up having to take his tube totally out and rip all the tape off and replace it on the other side of his face. He was so traumatized by that, it was unreal. I feel so bad for him, it just makes me sad. But he seemed none the worse for wear tonight and was acting fine. So we'll see how well things go when we go back on wednesday for his Neurology appt. He is really starting to hate PCMC. Poor guy!

But while there I was able to have a little time to go see a friend I have met through my 'thru the tulips' blog. Her little guy is currently at PCMC and I actually met her face to face at the Radiology dept last month. So it was great to see her and I hope to have time to see them again on wednesday. At least it gives me a highlight to having to go back to PCMC this week. Thanks Jessica!

Saturday, May 9, 2009

A Time to be Grateful

I decided today I needed to remind myself of all the things I am thankful for. And wouldn't you know, I have had a few reasons come my way to remind me (in all my craziness) that I am grateful for the little things in life.

First of all, I am thankful my little tornado Josh decided to sit and watch 'Baby Signing Times' for the entire half hour in this chair. I was able to get the dishwasher unloaded, dinner going, dog fed and taken out, and Trevor's homework done in record time. He was such an angel baby.

And my wonderful husband sent me flowers for Mother's Day! I was very surprised to open the door and see flowers! He is so sweet and I love him so much. It was just the thing I needed lately!

And if that wasn't good enough as it was, I recieved a package in the mail today from my sister Amy. I was very surprised to open my mailbox and see it and even more excited when I saw what she sent me. Last month when she was here in Utah visiting she picked up some material to make a purse for me and Chantel. I had no idea about it at all since I wasn't with her when she went shopping. So it took me by surprise. I have been out looking for a new purse/bag lately but hadn't found what I wanted. I could not believe my eyes when I saw what it was! It was EXACTLY what I had been looking for!

With the purse she also sent a sweet note that made me all teary eyed.... she told me she picked out this charm to go on in that says 'inspire' because she thinks I am an inspiring mom/sister. I don't know about that one, but it sure lifted my spirits a TON. I know she didn't know how much I needed this, but I did! Thank you Amy... you truly were inspired to send me this gift and the note... I needed it! I love ya sis!

So I have been reminded of what I am grateful for, and that is all that really matters. Some days it feels like I am going 200mph and don't realize how lucky and blessed I truly am. I have a wonderful family and some awesome friends that keep me going. Thank you to everyone!!!!