Friday, January 29, 2010

The Josh Roller Coaster.... part 2

See this unbelievably cute and handsome boy???

He needs surgery again. :(

We took Josh to the ENT (Ear, nose and throat) doctor today. Since he caught the swine flu and RSV last October, he has been battling ear infections almost non-stop. I am tired, he is tired and it was really getting old. So it was no surprise his Pediatrician sent us back to the hotel on the hill (aka Primary Childrens) to find out what to do.

Now I am not surprised he needs tubes again. Because when he had them put in the first time I was informed a small percent (like 5%) of kids have to have them put back in a second time because they fall out after a year or so and they still need them. So of COURSE Josh is going to fall into that small percent. Our little fighter goes all out!

But the ENT is also going to take out his adenoids this time around since there is always a chance of a third re-insertion of tubes if he doesn't. Seriously... what % do you think Josh would fall under??? His tonsils will also go if he finds that is the case once he gets in there. Why not?

So with his more complicated history and bad track record of recovery with surgery.... we are going to be staying overnight. yea for me. LOL!

Surgery is scheduled for Feb. 11th. We hope to get it done before he gets another ear infection. We don't want anymore dehydration. Wish us luck! Poor guy!

Monday, January 25, 2010

Trying to find my new' normal'

I am spending this week trying to figure out what my new 'normal' will be and how best to schedule my days. You see, I got a phone call from Scott this past friday that literally uplifted me in ways I have so desperatly needed.

The news???

He is getting a new schedule!!!!!! Right now he leaves for work at 2pm and gets home at 11:30 pm..on mon, tues, and fridays. He leaves for work at 11a and gets home at 8:30p on saturday and sundays. For the past three months he has missed most nights (which are chaos to say the least!), church and all the family parties. It has literally sucked all my energy to be the only one home during the hard times of the day.

So what has me sooo excited???

His new schedule is mon-fri from 8-6. This means he will be home every. single. night. to help me!!! And the whole weekend as well. He will be able to go to church with me, and to all the family functions. Also....except for that brief time he was unemployed... he has worked saturdays for the past 8 years. So to have him off on saturdays is a dream come true.

So now that he will no longer be home during the day... I have had to re-think the way I am doing things, how to schedule everything in I need to, and how to get around not having him home to be with Jordan when I need to do stuff with Josh. But trust me... it is so worth the hassle it is to find babysitting!

So... I totally have felt the HUGEST weight lift off my shoulders and I feel so happy now. I have been praying for a few weeks now for something to happen so I could make it through the next few months until we get Trevor some help. I have already gotten an initial appoinment for Trevor's youth intake, but it will take time to get things going.

So like I said, I am trying to find my new 'normal', but it's a good thing!!!

Tuesday, January 19, 2010

Update and Test Results.

Now that the weekend is over and I have kind of (ha-ha) caught up on my sleep I am now getting the blog updated from our latest crisis.

Josh went in and saw his pediatrician yesterday morning. He still has a faint heart murmur, but he thinks it just needs some time to go away. Whew! Good news there! He also checked his ears... which started this whole thing last week..... and he had a double ear infection. Not only is the one that was on the verge at the ER infected now, but the one that was fine is now more infected and inflamed than the other. Poor kid!! So we got an appointment with a new ENT down at Primary Children's and we go next week. I am pretty sure we are looking at tubes again. Sigh...... I am soooo done with ear problems!!! The doctor also had no ideas as to why he got dehydrated other than the fact that his body does not react to illness...even simple colds well and we just need to keep him as healthy as possible. So when we go to the ENT next week, I'll do another update then.

Now for Josh's ELAP test results. This is a developmental test that Early Intervention does to see where your child is at. You have to do them yearly, but Josh has actually had them done every 6 months. So here is his latest results.

Keep in mind that Josh is 31 months old.

Gross Motor = 15 months
Fine Motor = 18 months
Cognitive = 18 months
Language = 13 months
Self Help = 16 months
Social/Emotional = 24 months

His last testing was done in May of 09' and here is how much farther he has come. Gross motor remained the same. Fine motor gained 4 months. Cognitive gained 6 months. Language gained 5 months. Self Help gained 4 months. Social Emotional gained 6 months.

As you can see his biggest hurdle is still speech/language. Although he did gain, I am still a little worried of the fact that his gross motor has remained the same. Not looking so good neurologically speaking. It is sooo good to know we have an appt with his neurologist next month.

All in all he is growing and improving and that is the bottom line of what is important to me. He tries so hard at everything he does and I am proud of what he has done. He is still an amazing child and I am in awe of all he has overcome already.

Sunday, January 17, 2010

To the ER..... again.

I think I jinxed myself. Two days ago I remember thinking that it was so nice that Josh had no doctor appointments this month, only therapy. Oh why do I say or think these things?

So anyway... I had to take Josh to Primary Children's ER last night. I really never envisioned we were going to end up there. Here is the reason. Two weeks ago or so, Josh started this clear runny nose. There were no other symptoms that were concerning or out of the ordinary to me. On thursday I started noticing him playing with his ears. It has never failed for him to get an ear infection with a runny nose. So friday afternoon I notice he is playing with it still but at that point I knew we could not get into his doctor until monday. I figured I could use his ear drops and ibuprofen until then.

Well yesterday morning rolls around. I get him up at 8 and get him ready for the bath. I notice his diaper is not as full as normal, but didn't really think much else of it. I got busy getting Trevor and Jordan ready to go tubing with my sister-in-law and then going grocery shopping. Around 2:45 I realize I have not changed his diaper, nor is it leaking which it should be. So I lay him down to change him and the diaper in bone dry. No pee whatsoever. Now he is on continuous feeds... so he soaks diapers in a couple hours. I call my mom at work to get her opinion on whether I should wait or take him to Wee Care to be seen. She suggests calling and asking. I do. They want to see him (big surprise). I make an appointment for 6pm. I get going on some laundry and the phone rings... a doctor from Wee Care calling. After talking to me about Josh, his history and what is going on he tells me I need to take him to the ER. He said that what is going on with him is above what they can do for him. So I sit for a few minutes wondering if it is REALLY warranted to take him in. Because of his special medical needs I can only take him to Primary Children's.. an hour away. I call a couple people to ask what they would do (thanks Jessica and Raeanne for listening to me) and get packed up and head out.

I check before I leave, the second I get there, and about every 10 minutes after that for some pee. Nothing. I am worried at this point, but figure he probably has a UTI or something like that. After many hours of waiting they run some labs, cath him and get some urine and we wait some more. The PA we had when we first arrived was not taking this serious. I tried to tell her that at this point this kid has not peed in 10 hours and his feedings have not stopped. At once point she said... 'well I guess I better ask the obvious... did you forget to turn his pump on?". I was a little offended. Um... no and I have added formula every 4 hours when the bag is empty just like normal. I call my mom to check in and she tells me I should ask for a 2nd opinion. I decide that the next time I get the PA in I was going to do just that. Well about an hour after they told me the results of his labs/urine would be in (love the ER waiting time) the ER attending came in. She just informed me that she looked over his file and decided she better take it over. So she does another exam... much more thorough by the way.... and informs me that he has a heart murmur and his bladder is empty. So what I was thinking was a bladder problem was dehydration. She said the labs showed signs of it, but it is not severe. She also listened to his heart (the PA did not) and detected a heart murmur and that tells her something is not right. So since we can't increase his G-tube fluids because of his reflux, he got an IV and some hydration that way. I think every doctor there last night got involved because nobody could figure out how a child with a G-tube and continuous fluids got dehydrated. I just told them... welcome to my life with Josh. He is always stumping the doctors. He also did have a bulging ear drum but they decided to not treat that and have us follow up with his doctor tomorrow morning.

So the summary of all that? Even a slight cold can make Josh take a turn for the worse with no warning. So they suggested I keep him home and away from groups. Oh... wait I already do that. They had no other suggestions for keeping him well since we already do everything. They just told me to keep an eye out of his urine output today and take him in to have him checked tomorrow and to follow up with his GI doctor. Even though he is doing better today... the reason behind how he got dehydrated in the first place is still a mystery. Oh good... I was wondering what I was going to do in my spare time this week. LOL.

Friday, January 15, 2010

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 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!!!

Sunday, January 3, 2010

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 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!