Monday, March 21, 2011

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.

Saturday, March 19, 2011

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.

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!!!!

Trevor.....and the guilt

I almost waited to do this post because it is going to be a hard post for me. I have an extreme amount of guilt I am dealing with when it comes to him.

Don't ask me why he was in our dryer.... Scott took these pictures. I asked him about it and he didn't remember why Trevor was in the dryer either. But it's funny.

Here is another picture I love. When I am really busy I can usually talk Trevor into holding or feeding Kaitlyn for me. He will usually do it for a few minutes. He does NOT like her spitting up and freaks out when she does. In fact seconds after I took these pictures he got spit up on and had to take a bath. No... not because it was that bad, but because he freaks out. But the pictures are sweet.

Now for the update.
Trevor is really struggling right now. There is just no way to sugar coat it. I am tired of pretending things are going splendidly around here, because they aren't.
Of course this all goes back to the end of my pregnancy and when Kaitlyn was born. All 3 of the boys had the adjustment to deal with. We knew that. That really isn't the stresser here. It just happens that the pregnancy was one of the reasons we are where we are now.
Some background: Trevor and Jordan moved to a Charter School this school year. It has been great for Jordan. He is learning so much more than I can even believe and is being challenged like he needs. Trevor has struggled. I did research and talked to several people including the board of directors before making the choice to move the boys. Theyassured me over and over that they were set up for special needs kids, had a speech, OT and PT onsite, ect. I expected some bumps because this was the first year for Good Foundations Academy (GFA). In september we met as an IEP team for his yearly review. At that time school was going great, he had an awesome teacher and was happy. We made the decision to move from an IEP to a 504 since he was doing OK with the curriculum, it was the modifications we needed. I signed all the paper work to do the full fledged testing since it was due January of this year. I was warned it would take a few weeks. No big deal. Then the end of the pregnancy happened, a couple outpatient visits to stop labor, Kaitlyn coming 6 weeks early.... and before I knew it Christmas break was here. I realized I had never seen his test results or heard from the school. Then in January Kaitlyn gets sick with RSV. Life becomes chaotic once again. I am taking Josh to several Dr. appts and evaluations, Jordan has a couple dentist appts, I was getting Trevor back into his bi-monthly therapy appts, and the list goes on. I talk to the lady I carpooled with and found out the director for special education was fired/quit over winter break and there had been NOBODY at the school until Feb 1st. I was so mad. Mostly at myself because this was something I should have known. I dropped the ball and didn't stay on top of things for Trevor. So I call the school and ask to have his teacher call me (she is awesome and called me several times over the school year). We have a good heart to heart. She tells me he is failing reading and writing, has a D in Math and Cs in the rest of his subjects. He is not keeping up with the accelerated pace the board decided to set over winter break. I leave several messages for the new guy who took over for the special ed and wait for him to contact me. In the meantime I basically do a lot of praying and talking and decide that it would be better for Trevor to go back to his old school H Guy Child. I get in contact with the special education head there, who is awesome and remembers us and was so happy to hear Trevor was coming back. I finally hear from the guy at GFA and he apologizes to me and tells me that the school really did drop the ball big time and let Trevor fall through the cracks. He had only been there for like 2 weeks. He said it was so bad he called the State in to audit the school and get them back on track. I told him I just wanted Trevor's file and former IEP ready to get sent to his new school. I then go and get him registered and wait for the file to get there so we can decide how bad things are and what to do. He was out of school for a total of 3 weeks. It was lot's of fun. LOL.
So this past monday both Trevor and Jordan started at H Guy Child. When the school got his file and I talked to the Coordinator at H Guy Child she told me she was absolutely stunned at how bad his file was. There was paperwork missing, paperwork not done right and legally it was a mess. So for now we have Trevor in a normal 3rd grade classroom and are trying to get things going so he can be ready to go for next year. With how much work this will take it is basically like this year is a wash. I still don't know what is going on.
I just can't believe that GFA screwed up so badly! I think they are a great school with an awesome curriculum. They just aren't set up for special needs kids and they should have been honest with that in the beginning. They are basically trying to be a 'gifted' school without coming out and saying it. And that is great. I just wish they had decided all this before they opened their doors.
I know someone is probably going to tell me that it's not my fault this happened. I know that the school screwing up is not my fault. I am so angry with myself for not staying on top of what was going on. I have never been so out of the loop with Trevor and his education as I did this past school year. I am going to have a really hard time ever forgiving myself for this. As a parent with an autistic child, I KNOW I am his advocate. Nobody will stand up for him but me. And I even know that the second you let your guard down and forget to keep all this as a top priority.... THIS happens. And I have had so many parents of autistic kids tell me this and I vowed to NEVER let it happen to my son. And I did. And he is paying the price. His life is upside down right now and he has regressed in so many ways. And I will feel horrible about it until the day I die.
Now you know that life is not hunky dory at the Christensen house.
But, it's not the end of the world either. I got on my big girl panies and am fighting back. Hard. Life will eventually settle down and in a few months (yes it will take that long) we will be able to adjust to our new normal. It would just be nice to fast forward to that point. LOL!!!

Thursday, March 17, 2011

Jordan is 7!!!

Jordan turned 7 on March 8th. (Yes I know I am late at posting, but if you read the previous post you'll know that it was because of our computer I wasn't able to do any posts.)

Since I am finally going to be able to do an update on each of my kids now, who better to start with than the birthday boy?

Here are some facts about Jordan you may or may not know:

~He loves Blue. Anything blue. His new bedroom will have blue walls and blue bedding. He even wanted a blue ceiling, but I had to nix that idea.

~He is becoming such a great helper when he is in the mood. It seems like he can do more to help me than Trevor because he understands complicated directions. He will do all sorts of odd jobs around the house if I make him a to-do list.

~He loves Kaitlyn. He likes to spell out her name when referring to her. Makes me laugh. He loves to get her to smile at him and feels like it is a huge accomplishment when she does.

~He loves to play with my iTouch because Scott downloaded a dinosaur game. He is pretty darn good at it too.

~He is reading like a champ these days. He doesn't particularly like math (what MY child not like math? LOL) and will argue about doing his math homework.

~He seems to be the master at knowing odd facts. Mostly it is due to him watching the History and Discovery Channels lately. Whatever it takes to get him to learn.

~He is a very polite, well mannered boy. At least everyone outside of our family thinks so. LOL.

And this picture below really captures his personality. He keeps us laughing all the time.

Happy Late Birthday Jordan!

Wednesday, March 16, 2011

Our Basement

In case you have been wondering what happened to me and why I have not been blogging much..... this is it.

First of all our computer was giving me so many issues. It would not download pictures and I wanted to post pictures on all my posts. So now that we are far enough into our basement budget, we could finally get our new laptop. So now I should be able to blog lot's and lots!

Now for the basement. This is mostly for my sister who lives in Philly (Hi Amy!!) so she can see the progress. This is basically a weekly timeline. Scott and my awesome Father in Law started framing on the 19th of February. Today both rooms have the first coat of mud on and Scott is sanding them down to be ready for the next coat on saturday.

Here is Trevor's room framed.

This is Jordan's room framed.

This is looking from the bottom of our stairs. Their doors are right next to each other.

Closer view....

And this is another view of Jordan's room.

This is their doorway's again, but with insulation. Now you can really see the doorways.

This is Jordan's room again.

This is Trevor's room.

This is the other side of Trevor's room. His room is really big. Very rectangular so long and more narrow. He will have lot's of room to be left alone now.

This next picture is almost the same view...but with Sheetrock on it now. I took the picture before they got to the room for tape and mud.

He has that huge support beam that runs the length of our basement in his room. We decided to paint it white and not sheetrock it... much easier.

This is Jordan's room.
In the pictures below you will see that he has a small built in desk area with a light above it. We had a small awkward space along one wall because of the plumbing for the bathroom that will back his closet. My Father in Law, Ron, came up with this awesome idea to use part of the extra space for a built in desk (he did it in one of the bedrooms in a previous house) and Jordan is so excited to have a desk area. It will also have shelves above for storage (for all his 'projects' he is always doing LoL).

And so that is what is going on in our house. There has been so much pounding, sawing, banging to make the kids (well Josh and Trevor) go into some major sensory overload. My upstairs has a permanent layer of white powder dust from all the construction. It's so worth it though.
I just want to also take the time to let you know how amazing Scott is. He is working so hard on this basement. He spends about 10 hours every saturday now and for the last 2 weeks he spends up to 5 hours at night, every night, during the week to be ready for the next big step each saturday. He is still working and helping with the kids on top of that. I couldn't ask for a better and more amazing husband than I have. I love him so much. I will get all teary eyed if I keep on going. This last few months have been really stressful on both of us and he still works as hard as ever. Love him!!
And I want to also let you know how amazing my family is! Ron has been here for the last 4 saturdays working all day with Scott to get this done as soon as humanly possible. With him being the bishop I know he has other things he could be doing but he is so willing to help. I am so grateful. I am also grateful for my brother in law Jeremy for coming one saturday to haul sheetrock down our stairs and sheetrock the ceiling. I know it wasn't easy for him to get out on a saturday with Raeanne working all day. My mom was her for about 3 days straight helping me strip down and re-stain Kaitlyn's dresser she will be using. I had fallen on my elbow and she helped me immensely so I could stay on track with my timeline. My sister has come and helped with kids for me, and been an great help in numerous ways from babysitting to helping me with Kaitlyn's clothes. And also to my brother in law Brian. He came and helped haul sheetrock down, put it up on the ceiling, came one work night and worked until 10pm so Scott could be ready to tape and mud last saturday. And even came tonight to help unbunk the boys' beds so we can clean out their old room this friday. He stayed and helped organize and throw stuff away for me. It saved me hours of work. I have a cold and Kaitlyn is also sick so it was so nice to have him come do the one thing I was dreading this week.
I have amazing family. I love my family. I love Scott's family. We would be up a creek without a paddle if it weren't for them. Love you guys!!!!

Wednesday, March 2, 2011

You've got to be kidding me!!

So last week on monday the 21st of February, I was taking my dog to get neutered.... and slipped on the ice getting out of my van. I landed on my left elbow and it hurt a little but I didn't think much of it since I was trying to get Rosco checked in for his surgery. While driving home I decided to feel my elbow since it was starting to feel funny. I felt a big lump. It kinda scared me a bit. When I got home I had to talk myself into taking my sweatshirt I was wearing over my t-shirt off to get a look at it. It was not pretty. It looked like someone had shoved a golf ball under my skin. I called my mom at work to see the best thing to do. She said ice, ibuprofen and a sling. My sister was so nice and came up to my house to bring me a sling and clean out and bandage me up. Here is a couple pictures I took that morning off my cell phone (so I could send it to my mom to look at). Be's gross!

Now this is what it looked like 2 nights ago. Not pretty at all, but the swelling had gone down quite a bit. But.... it hurt worse every day and not better. I only wore the sling the first day since I couldn't get anything done with it on. Probably not one of my best ideas.

So my mom kindly suggested I really needed to go have it looked at. So once again my amazing sister came and watched my kids yesterday so I could go to the Doctor. He was not impressed with me for waiting 8 days to come in. He did some x-rays and range of motion tests. Diagnosis? I cracked my elbow. Awesome. I have an infection in the skin where the scrape was (very common I guess), but coupled with a crack in the bone can lead to some serious stuff if the bone gets infected. Double Awesome.
So... I am on strong antibiotics, pain killers and ibuprofen for swelling and the dreaded sling for 3 weeks. I have to go back on friday to make sure the infection is getting better. Triple Awesome.
Being one handed is not boding well for having 4 kids, 2 of which are very dependent still. It's been interesting to say the least. I just hope it heals fast now that I am on the right track.
I just didn't have any excitement going on right now. LOL.