Josh.....what do I say?

I have been putting off this update partly because I knew it would be long, but also because I would actually have to sit down and put everything going on with him into words. And that is what I am not doing so well with.

So, I will just jump right in.

Josh was seen at Primary's two weeks ago for a Feeding Clinic appt. All in all it was a good appointment. He is exactly where they want him for height and weight. We did some med adjustments to include his weight gain since last appt (in July... sad!). But Josh has been having some major tummy issues again. Very constipated is putting it lightly. I started running water through his G-tube during the night, and it seemed to take the edge off the problem, but didn't solve it. After talking to Dr. O'Gorman about what is going on, we came a to a couple conclusions. He is not getting enough water for his weight. I didn't even think about that. I have just been doing the same amount as always. Also... he has a major motility problem. And she suspected that if we ran a small amount of water through his g-tube almost 24/7, it might just push things along for him. So.... we started that. I hate having to have him hooked up to his pump so much again, but guess what? It worked! I am doing a smaller amount per hour than before because his doctor thought we were putting too much for his body to absorb it where it needed to. And for whatever reason....Josh's GI system just does not function properly and will need a constant push. So.... as far as future goes for him, it looks like the tube is here to stay for awhile. I get alot of questions on when does he get to have it removed. Well.... there is your answer. Not anytime in the near future. So once we got that problem under control he is doing well from a GI stand point.

But of course it wouldn't be life with Josh if that was all we were dealing with. Ha ha. Jokes on me. About 2 months ago I noticed he seemed 'off' for a couple days. Slowly since then he has had more and more bad days. His balance is bad, he is falling and getting hurt so much. He has fallen off our barstools probably 3 times a week now. He hadn't fallen off in months. He has bad bruises on his legs and arms from falling, and even some on his chest and back. He endurance isn't what it used to be. He gets tired doing things he did fine before. He seems to run stiff legged alot. He seems uncomfortable alot. He complains of his legs and arms hurting. I don't know if it is a tone issue or what. He is genuinely not himself. Even his preschool teacher has noticed and was concerned. I called his Neurologist to get an appt and of course they are booked out until September now. I can't wait that long. So I am going to take him into the pediatrician and see if he has any better suggestions or can get the ball rolling with neurology faster. We'll see. It has just been heartbreaking to see him struggle so much. He did good for so long that I kind of 'forgot' about how things can go with him.

And then to top all of this off we had his IEP meeting on monday. I have a love/hate relationship with IEP meetings. They are great because it is the only time you have the whole team of people that work with your child together in one place. But... I always leave these a little sad because it is a stark reminder of how far he has to go.

This time the big focus was on speech. Meaning it was the one thing we talked about in depth and there was an additional speech pathologist there from the district that gave good input too. Basically I learned that his diagnosis of Speech Apraxia is the hardest speech disorder to overcome. Awesome. I leaned the tiny little progression steps of speech and realized that he has a really long way to go. He has to learn the basics... like the most common sounds... pah, bah, mah, kah, lah to even begin to learn words. That is what they are working on. He is doing the PECS (Picture Exchange Communication System) very well. He is signing very well as has has been for over a year. The goal is to get him ready for a communication device by mid year next year and be very proficient at it by the start of Kindergarten.

So Basically I was told it is likely going to be years until he can speak intelligibly for people to understand. They don't know yet if he has developmental Apraxia... meaning as the years go by and he learns to speak he will retain everything... or if he has regular Apraxia. That means he will lose words and gain words his whole life and having a normal conversation will always be a problem. He has already lost some words that he could say before. So they don't know. This next year will be crucial in that regard. We might get a better long term prognosis next school year.

So... that is what is going on with Josh. He just need some extra love and support right now. Things are difficult for him right now, but he is a trooper and pushing on through.

I will update as I get more information.

Kaitlyn's Girly Room

It has taken me way longer than necessary to get Kaitlyn's  room on here. Hers was actually the first room completed too! We had carpet laid on Thursday April 14th and she slept in her room with all her furniture for the first time that night. The boys moved in the night after that.

So anyway, here is a before picture of her room when the boys were in it. You can see the amazing, ahem, awful, wall paper that was up on the bottom half of the walls.

 A Good close up of the wallpaper. Yes... it has pheasants on it. Isn't is lovely?

And the dreaded valance. It was screwed into the ceiling so it's not easy to take it down.

And here is the wallpaper stripping process. My awesome Mom came and did most of it for me. She was such an amazing help with this room. Other than a couple things here and there that Scott had to do... this room was all done by me.... all the work from start to finish. He was pretty busy with the basement.

And here is the finished paint and decorating job. I LOVED how it turned out and I had so much fun doing a  girl's room. It was a blast!

Now here in the complete finished room. This was after the new carpet was in and we finally moved her furniture in. It was so nice to get her things out of our room and get her moved into her own space. And the room was such a dramatic change. The pictures don't do it justice.

Her crib and new crib bedding.

I had fun ordering things off of Ebay to decorate her room with. This is on the outside of her door. Those flowers are all over the walls in dark pink and brown. You can't tell very well in the pictures.

This is over her closet. In case you can't read it well it says "Giggles, Ribbons, Bows and Curls....Oh Thank Heaven for little Girls.'

This is over her doorway.

This is over her window.

This is one of the things Scott did for me. He hung this shelf for me to put the letters of her name on.

One of the reasons that things were so hard for me the last couple months was because our basement was being done, we were busier than ever, and I also stripped down and re-stained Trevor and Jordan's old dresser for Kaitlyn and her changing table. This is a before picture of her changing table.

This is the after. I stained it dark to match the crib and dresser. It was alot of work and my mom once again stepped in and helped me, and it was so worth it. I love how it turned out.

This is also the after of the dresser. It was actually already dark... even darker that this. But the boys has trashed it so I had to do a bit of repairs on it and then stained it so you can see the wood grain through it. I also took the drawer handles off and put these pink knobs back on this and the changing table.

So there you have it... the pretty pink room. At least that is what Scott and the boys are now referring to it as. I am so happy to have all 4 of my kids in rooms again and my life back under control. It was fun, but I am glad it's done.

Our Basement is finally done!!!!!

 Since this was my(Scott's) project. I thought I would do this post. Please enjoy!

Here is Trevor's room completely done! Go Pack Attack!

 I am 100% jealous that Trevor sleeps here and not me.

 This set needs to come in King Size.

One inch off on the the closet, and we had to use curtains.

Trevor's room before carpet.

 Jordan's room before carpet.

 Jordan's room completely done!

 Jordan's built in desk.

 Another view of Jordan's room.

 The two rooms during framing.

 More studs! Why am I not in a picture of studs?

 Jordan's room during framing.

 Jordan's room during sheetrock.

 More of Jordan's room during sheetrock.

This is a duplicate. OOPS!!!

Trevor is 9!!

Trevor turned 9 on the 9th of April. Can you believe I have a 9 year old???

I wanted to do a long post about him, how he is, and my yearly post about Autism Awareness with April being Autism Awareness month....

but......

my life is still in chaos and I don't have much extra time. Carpet is being installed today and by saturday night, my house will be back to normal for the first time in almost a year. It is so exciting.

In the meantime.... here is a couple pictures of Trevor from his birthday. We did his party before so on is actual birthday he got a cake and just our family sang to him. He spent some of the day with his aunt Allyson (Scott's sister) because they share the same birthday and she took him out. They went bowling, miniture golfing and to McDonalds for lunch. He absolutely loved it. Since we had a marathon painting day that day to finish the rooms, it was nice he was still able to go have fun. 

Birthday Party

We did a combined birthday party for Trevor and Jordan this year. Since our house is torn apart, we moved the party to Scott's parents house. It was a fun little party for both sides of our family. Here are some pictures from that night.

I could not get a decent picture of the kids before we sang. Surprised?

 I had to get a picture of the cake. I picked it up from walmart the day before and looked at it quickly because I wanted to make sure the boys names were spelled right. I didn't even look at Happy Birthday because I figured it was a given. I was wrong. If you look close you will see they spelled it, "Hapy Birthday". Awesome.

I can't believe by this coming saturday I will have a 9, 7, almost 4 and 4 month old kids. Time sure flies these days!!!

Josh... in a nutshell

Where do I even begin with my little Joshie? That is what everyone calls him, Joshie. I do too on occasion, but I have my own special nickname for him and nobody else uses it. Since he was so small for so long and had such a hard time growing and gaining weight, I would always call him my Little Bug. I still do call him that sometimes, but mostly the nickname evolved into buggie or bugs.. Don't ask me why.... probably because it has an ie sound just like Joshie does. But no matter how big he is, or gets, he will always be my little bug.

He is doing very well right now. He is always having some issues going on, but in general he is doing well. He just saw the fabulous sleep specialist, Dr. Pfeffer. She changed his dose of Trazodone and added a med called Clonidine. In case you were wondering..... the sleeping had gone to a point of 3-4 hours of wide awake in the night again. Sigh..... one morning I woke to find THIS all over his wardrobe closet. Awesome.

He hasn't seen GI or the Feeding Clinic down at Primary Children's medical Center because I had to reschedule his appt due to Kaitlyn having RSV. But over the phone we did some med changes and did one HUGE change.... formula. We were able to put him back on Nutren Jr. a milk based drink (basically like Pediasure) and he has done fantastic on it. Some minor added constipation problems, but worth it for the fact that he is now eating much more by mouth. I still have no idea if we will ever get rid of his G-tube since we use it for water every day. He just won't drink enough to keep his crappy GI system running smoothly. But.... it's a huge step in the right direction.

Speech is coming along sooo slowly. He adds a new word about every 3 months. I am in the process of looking at some different things to do with him for that. He loves to mimic easy sounds though and keeps us laughing with his attempts.

Now for the picture below. One night Scott was trying to see how well Josh understands things and was giving him weird directions. Most everything was a little over his head and he didn't get. Just to be funny Scott told him to squeeze his cheeks. This is what he did:

Now these next couple pictures really show his personality I think. As you know Scott is finishing off two bedrooms in the basement for Trevor and Jordan. So for the last several weeks he has been spending hours and hours down there. On occasion he has things he needs Trevor and Jordan to help with. Because of Trevor's sensory issues, we bought some medical gloves for him to wear. Scott even wore them a couple times for things. Josh caught onto that and for the last month or more gets a hat and one glove on to go 'help' downstairs. It is always just one glove which makes me laugh. And we don't know why he thinks he needs the hat unless it is because it is cold down there. But he is always putting this hat and one glove on (never gets the fingers in the holes right or even the glove right side out LOL) but he is very adamant that he wears this. It is just so stinking cute!

And the last several days my mom has been coming to help strip off wallpaper in the room that will be Kaitlyn's. Believe it or not, Josh was the biggest help to her. We used a fabric softner/warm water mixture to peel it off. My mom would get several places started along the wall and Josh would come behind her and peel it off. She was amazed at how helpful he really was. And he worked with her for 2 solid hours on saturday either stripping down the paper, or washing the glue off with warm water and a scrubber. I have never seen Josh that focused on anything before. (The ADHD meds we have him on are really working!!) I love my little bug so much. He is going to be 4 in just a little over 2 months. I can't believe it. I am trying to get all the snuggle time in right now because soon he won't be interested. I don't know what I will do then. He is a sweet boy that has overcome so much and deals with so much on a daily basis that most people would give up. Not my Josh. He just chuggs along with his happy go lucky personality that I love so much.

Kaitlyn (picture overload)

Now it's Kaitlyn's turn for a post. I haven't been able to do a lot of posts I wanted to do because I needed pictures to go along with them. So now this is going to be catch-up post of several different things.

First off.... just wanted to show you why my little girl needs a room desperately. She already has taken over half of our bedroom. And now the living room is being over-run by her equipment. This first picture is her extra O2 tanks and where I stash all the cases for her monitors, oxygen, ect. for when we take her out.

This is her O2 Concentrator and suction machine. Plus some extra supplies I have are currently being stored here as well.

And we had to move our rocking chair to the basement and put the coffee table against the wall to give us somewhere to put her monitors and ect so the cords weren't stretched halfway across the room. It has been quite the adjustment.

This picture I took one night before her bath. She has built in toys now with all her wires. She has two leads that monitor her heart rate and respiration's for the Apnea monitor. They are on her left and right side with that white band to hold them on. She also has the oxygen cannula on her face with tubing to hold on to. She also had a pulse oximeter that wraps around her foot.

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If you look closely you'll see she has a wire of some kind in each of her hands. At least if she chews on the oxygen tubing it is fine. Built in teething toy.

Now to change gears. We blessed Kaitlyn at our home on March 6th. Since we do not take her out yet with it being RSV season still, we opted to do her blessing here. It turned out beautiful and it went very well.

My sister made her a bracelet to go with her dress. It turned out so adorable!!! I did a comparison picture to show you how tiny the bracelet was. I used a milk jug lid to show you the size.

And a closeup of the bracelet. My sister did an awesome job!

This is Scott's grandma Margie Christensen. This is who we got Kaitlyn's middle name from. She is an amazing woman and we hope that Kaitlyn can grow up and be like her with her wonderful example. It is such an honor to use such a great name for Kaitlyn's middle name.

And of course my sweet baby in her blessing dress. She looked so beautiful!!! It was an amazing experience and very spiritual for our family.

These pictures are from last week. I borrowed a Bumbo from a friend in our ward to help Kaitlyn get some better upper body strength. She looks so big in it!!!! Where has the time gone? My newborn is gone and she is growing up.

Whew!!! That was alot of pictures. Now for a quick update.

Kaitlyn is doing pretty good. She has been sick on and off several times since her RSV. We have not been able to begin the process of weaning her off oxygen when she is awake since we have to keep upping her oxygen due to being sick and her sats dropping. But we hope by mid-april to have her off when she is awake. As far as using it at night, it looks like there is not time frame in sight yet. She still has several apnea episodes which are only better if we keep her O2 up higher when she sleeps. We'll get there though. Developmentally she is right on target for her corrected age. She is holding her head pretty good now with just the bobble head effect going on. She smiles, just learned to giggle and is cooing now. She rolls to her side, but not over yet. She still does not hold any toys, but will hit at her floor mat toys that dangle. Her reflux is slightly better now that we have her on two meds for it. She is going with Josh to see an Ear, Nose and Throat doctor on April 15th because of her numerous ear infections already.

All in all she is chugging along at her own pace and is very laid back and happy. We love this girl so much!!!!