Why I have been MIA

I have sat down at my computer daily for the last 10 days or so and just could not do an update. It's been a really long few weeks for me... for reasons I am not going to go into detail about. The short version is: I have been having a hard time keeping things together with Josh and Trevor. Both kids have had numerous problems going on and it just took it's toll on me. Things are going better now and here I am!

So now I have to do a catch up post!

This picture is from a couple weekends ago when my family celebrated my nephew Parker's third birthday. Since his birthday is the day before mine, we did a b-day party for both of us. My boys had been dying to hold their new cousin, Evelyn and finally got the green light. They were so excited and Trevor was mad at me for taking her back. It was so cute.



We got a new 'grandkid' picture since Evelyn arrived and we needed to get her in it too. It is always quite the process to get little ones to look at a camera. It was fun though and my dad got a couple really good ones.

My birthday fell on a saturday this year. Scott asked for it off like three weeks before so he could get me out of the house. We had a plan to go to a Go-Kart place and dinner, and my mom had Josh and my aunt was going to take Trevor and Jordan. We found out a few days before that Scott's great-grandma passed away and so we ended up attending her funeral instead.

Now the boys insisted I needed a cake since we did the family party a week before my actual birthday. I decided to let the kids pick one out at walmart since they asked a bazillion times. They were a little mad that I didn't agree on a deer hunting themed cake. LOL! But we finally agreed upon this one. I took a picture of them with it since it was the first time they had ever insisted I get to do something for my birthday.

Now onto a little bit about Josh. We have just had some bad days with him and a couple good ones in between. He has spent most of the time since before Christmas sick and not eating at all by mouth. Last week he broke out in hives all over his body the cause of which is still unknown. His skin is sooo stinking sensitive... I really despise it with all my heart. I took this picture tonight to show you what his skin looks like where we have to tape for his feeding tube. This is actually good for him. I just hate how miserable it makes him and I wish I could make it stop.

Now onto the last big project of what I have been insanely doing. We need a new bed. There is just no getting around that fact. We got a memory foam/temperpedic pad for it like 5 years ago..... and that is no longer working. So with our tax return we are going to buy a new bed and upgrade to a King size. Well.... once I started pricing headboards/footboards (which I have wanted our whole married life) I decided that since the cheapest we found was 699$ .... we were going to have to wait. Scott spent hours online at ksl.com looking for a deal on one. HE FOUND ONE!!!! We got a beautiful brand new headboard/footboard with rails... for 179$ at some matress dealer in SL. I was soooooooo excited! So he went and picked that up this week and we just decided to paint our room that day. It has been alot of work, but I absolutely love it! I just can't wait for our tax return so we can get the matress set.

This is the best 'before' picture I could find tonight. This is right before we moved in actually so my grandparents stuff was still in it. But you can see the horrid valance and the dull walls.

And here is the after! I love the brown... it makes our room not soooooo bright? I guess that is the best way to explain it. If you look close you can our new headboard/footboard behind our current one with blankets over it. I will post pictures when we get it all done. I love it!!!

2010 and Josh

As I said good-bye to 2009, I decided things are going to have to change to make 2010 better. So here we go with the 'new' me and way of life.


See this cute boy? He has been the source of my stress for the last month. Don't get me wrong, he is ALWAYS the source of my stress for the most part, but it was like out of control, not getting any sleep stress. So while the kids were off school for the holidays, I spent a few days trying to figure out how to de-stress myself and my life. So far so good.... LOL!

Now for an update on Josh. He had an MRI done on Dec. 17th. We finally got a call from Dr. Filloux last week on the results. His words? "Well it's good and bad." I took a deep breath and said "OK". Basically his MRI came back good, with no obvious signs of big changes since his last MRI. He has a bit less space for his brain than before (from his microcephaly), but so far it's OK. There were a couple spots that were the same as before, just not quite as developed... nothing to big to worry about. The bad part? Well Dr. Filloux is concerned about what IS going on and that we still are no closer to answers than we were before. I am charting his 'off' days and what goes on when he has them. We have an appt with Dr. Filloux for him to do another exam, sit down and go over the last testing he has had done and see what we are missing, or what else it could be. He clearly has something neurological going on that is yet to be diagnosed. He still can't rule out seizures since you can have them and not show up on an EEG if he was not having them at the time. So we aren't any closer than we were before. It's frustrating to not be able to know what is going on. His off days has been more frequent in december and was very hard for me to watch. The other concerning thing has been his regression in eating. He stopped eating all together for about a 10 day stretch. Now when he does eat, he won't chew and has been just holding food in his mouth until he gags or chokes. It's been very draining on me to deal with it every. single. day. all. day. So that is part of where my stress has come from. It is also why I decided I have to make some changes to help my day to day life go smoother. Since I can't control what is going on with Josh, I can at least make the things I do easier on me.


So... to start with..... this is what my living room floor looks like every morning. This is what it takes to get him dressed in the morning. I timed it today and from the start of when I lay him down after his bath to the time he is hooked up to his pump and free to run around was 22min. It's no wonder I have smarties there for a bribe to keep him happy. 22 min in a two year old world is forever.

Now the other problem/frustration I have is his feeding pump and tubes. I love his new pump....it DOES make it easier. But just the fact of having a 2 year old on a feeding pump 24/7 has many challenges. I had been putting him in all his regular clothes, with lot's of tape to keep things in place. We had kinked tubing, pump beeping, diaper change nightmares going on. I follow many blogs with special needs kids and have noticed one thing the same about them all.... the way they dress their kids (the ones with tubing of sorts). I decided that even though he has all these cute clothes, I need to dress his conducive to tubes. One of the things I am in the process of doing is making 'BabyLegs' for Josh. They are just leg warmers that go from thigh to ankle. I priced them and was annoyed at how much they were. So a friend of mine (thanks Shanda!) sent me a tutorial on how to make women's knee high socks into BabyLegs. I am sooo excited to get started!

This picture is of the ones I am going to make this week. Using these allows Josh to wear just a onesie so there will no longer be tape everywhere.

The other thing I have done is buy long-johns... like Gerber ones and put those on and then snap his onesie over them. It probably looks really funny and he might get laughed at, but now his tube can just hang down from his tummy and there is not pressure on it to stop the formula flow. Diaper changes are also a breeze now. No more pulling off 8 layers and re-taping ect.

Now for another way I have made my life easier. I started making his formula in my smoothie blender. Not only does it work really well, but I have a handy spout to pour the formula into bottles. Nice huh? I love the time it cuts down!

Since Josh is on meds 4 times a day.... I do this every night before bed. I got cheap baskets and labeled them for the times of day we do meds. Now they are ready for me so that time is cut out during the day... and I can just grab it and do the meds and flush his tube at the same time. If I forget to grab them and am doing something like a diaper change, I can even ask Trevor or Jordan to grab his meds for me and they can. Wish I would have thought of this earlier!

And this hangs on my fridge. I no longer have to sit and wonder how long his G-tube has been in, when I need to order more supplies or what I need. I used a permanent marker (in black) so I can erase easily and re-do it as I go. No more post-its, little papers ect. around my house!

And finally my clipboard. I have to keep track of this stuff for the Neurologist and I was having a hard time doing that. So one night (in the middle of the night LOL) I got this grand idea to buy a cheap clipboard, hang it up and I could keep a record and not have to wonder where my paper is, or if I wrote it down. How much easier can it get?

So as I said good-bye to 2009, I have high hopes for 2010. I have come to the conclusion that life is not going to 'settle down' and I just need to plan that way. I know that Josh will continue to keep me on my toes with his problems, but I can make my day to day life better. I think in the long run that is what has been wearing me down. I feel much better being more organized and even though it does take effort to keep it up.... it takes effort to keep up with Josh anyway. I just apply my effort in a different way. If any of you have any more suggestions or things that you have done... please let me know!!!

I hope everyone had a great year and had an enjoyable holiday season!

Pictures and stuff

I figured I better post some pictures from the past couple weeks.... except I forgot to take any. LOL. So my dad brought me a copy of all that he took and I am 'borrowing' his.

Our Christmas was great this year. Thanks to some anonymous angels, we had a great Christmas. Since they are anonymous, I can't thank them personally... so whoever you are (and you do know who you are) we are so very grateful for you and your kindness and thinking of us. It truly made it a wonderful Christmas!

Now... onto the pictures. They are random... but fun!!


My brother-in-laws....... they are great!

Both of my sisters with my new niece Evelyn and my nephew Ryan.

This picture is just priceless! He could be a Gerber Baby!

And my other cute nephew Parker. He is wearing his "Big Brother" shirt.

My niece Kyrie. I miss this girl so much. She is so much fun and always makes me laugh.

So cute!!!!!

I can't get enough of her smile!!!!!

Parker getting his Buzz Lightyear and Woody I gave him. I just wanted to see his excitement over it.

Since Ryan and Trevor were sick for Christmas, we had to break it up so that we could all see each other somehow, but not have anyone sick over at my sister's with her new baby. So here is Ryan getting his presents before the rest of us (minus Luke and Ryan, Scott, Trevor and Josh) headed over to my sisters for our family gathering.

My sister and her family.

And finally... here are my boys on Christmas Eve. Scott had to work all night so my parents came up to see the kids that night. My dad even got some good pictures of the kids all together.

I hope everyone had a great Christmas!!! I will do a post soon on Josh and some challenging things going on with him right now. I just need some more time to get my emotions under control and life back in order. Happy Holidays!

Sweet Evelyn

I finally got to meet my new niece Evelyn Rhea Heap today. She is so precious!!! I am so excited to get another girl in our family!!!!

GingerBread Houses, Eating and a Baby

I have been trying to get an update on the blog for about a week now. It seems like it was one of the craziest weeks I have had in a long time and it just never happened. So now I am doing a extra long update to catch you up.

Last saturday (Dec. 12) Scott and the kids made a Ginger Bread house. They did one last year and really loved it, so we did one again this year.

Josh is the one with the most news to update (what else is new?)... so here we go.

The pictures below was taken a few days ago of Josh using a spoon and eating!!! This is huge news....he has not been able to figure out the motor planning to use utensils. It's been bitter/sweet in the eating area right now. He has regressed quite a bit and has perplexed both the Therapist and I. He is not attempting any chewing right now and is requesting pureed food when he will eat. He has been on thin liquids for awhile now in a soft spout sippy cup and done fine. But he doesn't really suck on it, more just chews it a little and gets some out. Recently he has been very interested in Capri Suns, Juice Boxes, ect. Well he is not managing the thin liquids that way since pretty much every time they come back out his nose. I am not sure why he is having such a hard time, but he is. So for now he can still have gatorade in his sippy cup, but if he wants a drink with a straw we are going to have to go back to nectors again. Sigh... it's always something with him.

Now onto other news. Josh had his MRI this past thursday. Can I just say I am soooo glad this is not something we do on a regular basis?? It is not fun. The end. He had to get poked in both hands for his IV and he was not happy about that. Duh. Then he had a new anesthetic that he has never had before and did not react as well. He did get some Zofran in his IV before he even woke up and at least we didn't have any puking or heaving this time. He did however have some nasty side effects and BAD balance issues. He was very out of sorts (for lack of a better term) and it lasted the full 24 hours they said it could. I am just sooo glad to have that over with. It is hard and stressful and not fun. I will post when we get results.

Josh also had his yearly testing to see where he is at developmentally. When school gets back in session I will get those results and post them as well.

Now for some happy news!!! My sister, Chantel had her baby at 2:23 this morning!!! Evelyn Rhea Heap was 7 lb 3 oz and 19 in long. I have not seen her (hospital rules) but I will post some pictures of her when I get some. I am sooo excited to have a new niece. Congrats to Chantel and Brian!

Today is MY christmas day!

Today was a great day! For numerous reasons in fact, for me, it was as good as Christmas.

Josh got his new Feeding Pump today!!! I know most of you won't understand why this is so exciting, so you'll just have to trust me on this. I thought I would take some before/after pictures of this grand event so you might be able to understand.

This is the old and new pump. Look how much smaller the new one is!!!

And this is the new super mini backpack that we ordered. Look how much smaller it is from the one he has been using.

And just a comparison of the Feeding Bags. The new pump has a different design, but holds the same amount of formula. Who woulda thunk it?

This is Josh wearing his old backpack.

And the new backpack! He is doing to be sooo happy!

And here is the new set-up in his room. I am hoping this means a beep-free night!!

Now onto the other reason today is MY Christmas. We had a visitor this morning at our house from the 'North Pole'. It's not anyone we know. He gave us a note that said Mrs. Claus wanted to help us out this Christmas season. The 'helper' went out to his van and proceeded to bring bag after bag of presents in our house. Scott and I were shocked. We don't know who did this but we are so overwhelmed with gratitude. We don't know why someone picked our family since there are so many others out there who need it too. But we are very overwhelmed with gratitude that someone thought of us.

Under our tree is now CRAMMED with presents. We still are in shock and can't believe it. The kids are so excited they can hardly wait to open them on Christmas.


Happy Holidays from a very overwhelmed and thankful Christensen Family!