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!!!

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?

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!

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!!

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!

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!!!!

Here we go to every doctor again....

We are going to have a very busy month! Josh has an appointment with just about every doctor in the next 4 weeks. His first appointment is with Dr. Filloux, his neurologist. We are going to get all of his diagnosis' on paper for future reasons. His Dypraxia has not been formally put on paper yet and we need it. So because of this appointment, all of Josh's therapist have written a summary of what they see with Josh, and re-did some testing to show where he is at right now. He has made some great progress and I wanted to share it! His last Rosetta Test was 12-16-08... so it has only been just under 5 months ago. His Gross Motor skills were at 13 months, and now is at 15 months. His Fine Motor was at 14 months then, and still is. His Cognitive was at 10 months and now is at 12 months. His Language/Speech is at 8 months, there was no change there. His Self-Help was at 8 months before and is now at 12 months. His Social Emotional was at 9 months before and is now at 18 months. That is a 9 month jump in 5 months!!!! I was so happy to see that.

He also has the appointment with the Genetics department on June 3rd. I have been getting all his medical records released to them from each doctor and filling out the longest history questionaire ever!

Josh is also going to have a G-Tube placed. This is the tube that is surgically placed directly into his stomach. He has a test scheduled for next monday to make sure his upper GI tract is good and then we will get the G-Tube done sometime in the next couple of weeks. He also has an in-depth appointment with the Feeding Clinic on May 27th. So we are going to be very frequent travelers down to Primary's for the next month. Scott and I also need to take a class at Primary's about the G-tube. Fun stuff!!

So that is what is keeping me busy. Trevor and Jordan are out of school on May 29th, so we have alot of end-of-year stuff to do as well. It's going to make for the fastest month ever I think!

And in some other random fun news, Josh has finally learned how to climb onto our computer desk chair and our kitchen table chairs. He has been trying for a long time. He still is not able to go down stairs yet, but he is getting a little better... practice makes perfect!!

And this is what else I have done...

I decided to try and cut my finger off yesterday.

I was cutting tomatoes for a salad and somehow got my finger right in the way. It was not pretty. Thank goodness my mom is a nurse... that's all I can say!! Thanks mom!!!!

It has still been oozing today... so I have had to keep tight pressure on it still. Hopefully it will heal fast.

What do I do in my spare time?

This is my most recent project.

Since Josh has been diagnosed with Apraxia of Speech (a speech disorder), we are not sure how long until he will speak. We have already been doing sign language with him and he knows 8 signs. But some of the more complex signs are still difficult for him due to his Dyspraxia. He has a hard time remembering and putting all the motor movements together to sign. So like we did with Trevor, here we go with the PECS again. For those of you who want a little info, PECS stands for Picture Exchange Communication System. Basically he hands me a picture of what he wants. That way he only has to learn to hand me a picture when he is need something and it is the same movements over and over. So I took all the pictures we need for now and finally got them in a binder. I did something like this for Trevor, but this is much better and more durable. So I thought I would share some pictures of what I have been doing at night when everyone is asleep. LOL!

This is the front cover. I just put 6 peices of velcro on it so I can attach a couple pictures at a time... like for him to pick a snack for mealtime. That way he doesn't get so overwhelmed with all the pictures at once.

And this is how I organized the pictures so I can find what I need in a hurry. I'll keep you posted on how well it is going. Life is sure never boring around here!