Wednesday, October 13, 2010

How fast things change

~~Before you read this, scroll to the bottom and turn off the music~~

So updating my blog has taken a backseat... I'm sorry!!! But given the pregnancy issues going on, I am sure everyone will understand!

Just to start this update off..... and for those of you who don't know..... I did indeed get to have my first trip to the hospital for contractions last saturday night. I have been having them for weeks now, but they were every 3 min or so and after a day of meds, hadn't slowed down. I was also not feeling well which I knew could be possible pregnancy complications. I went in, they monitored me for a bit, gave me a shot, took labs and since I have an AWESOME doctor, I was able to come home after 4 hours. I just have to take the meds every 4 hours round the clock now for the rest of the pregnancy and be even more careful (is that possible???). So all in all.... it wasn't too bad I just needed an extra boost to get things back under control. I really hope this isn't a forewarning of what is to come... but who knows. Other than that things are stable for me.

OK... now THAT is all over with.... here is a big update on our little guy. It's been a busy week for him with big appointments. But first.... pictures!!!!

These pictures are funny. Believe me. If you know Josh, you know he HATES blankets of any kind. He has not had a blanket in his crib or his bed now since he learned how to throw them out. He doesn't sit under them or even care to have them around. But Trevor on the other hand likes nothing more than to tightly wrap his entire body in a blanket. He has been doing his daily reading alot while under his blanket on our couch. A couple weeks ago, out of the blue Josh just started dragging this blanket out and using it while he reads books. It is so funny to see him copying his brothers. Makes me smile!!!





I really hope this video works (since I can't tell until I publish the post). It was the other night when Scott was getting his nightly G-tube stuff/meds/jammies done. All Scott was doing was sitting there looking at Josh. He wasn't making faces... just starting at him. It is rare we hear Josh laugh like this. I grabbed the camera because it was so cute. Enjoy!



video

Now for the appointments. Yesterday Josh had a routine appt with Dr. O'Gorman, his GI doc down at Primary Children's. There have been many appointments we go into knowing that there is multiple things to talk about. This was actually a quick appt for Josh and I loved that. He is doing very well from a Health standpoint. His height and weight are right at target now, he is on the charts and looks awesome. I already knew that, but it's still nice to hear. For once this was not our biggest concern area. Should mark the calendar on that one. LOL! But..... as usual there is always something that has to be figured out. This time it's his worsening (to put it mildly) constipation issues we have going on. He holds his stomach alot and says 'owie' and cries. He doesn't poop for days, when he does it is completely awful. So I didn't know what the answer was going to be... but something has to change. Dr. Molly (that's what she has the kids call her) had a resident and another dr in training all come in the room to get opinions. (love having THAT kid). She doesn't want to increase any meds (he is on 5 for constipation), but she is pretty concerned. She has been his doctor for 2 years now. She flat out told me she was really thinking by this time we would be weaning meds, not upping doses. So after a lengthy and in-depth conversation about the foods he IS willing to eat by mouth, she has a hunch. He eats a lot of carbs. Since he has been eating more by mouth over the last 2-3 months and that is when things got worse... she is concerned his body can't process carbs. I guess there is a couple disorders for that, but they are hard to diagnose. So since she doesn't want to totally rock the boat right now, we decided on a plan to see what we can do about it. Every 3-4 days we are going to have him go NPO (no food or drink by mouth) and do only G-tube feeds with his special formula and see if we notice any improvement. If we do.... we add more NPO days to see what happens. She does not want to make him NPO all the time, but at the same time is also worried about long lasting damage/results of this constipation. I have to agree.. he IS only 3!!! So that is our new plan. We did double one med dose, but that was it for now. She just doesn't want to increase any more meds since he is on 13 meds a day for all his problems. I will have to see how this is all going to play out.

Now for his appointment today. He had an appt with Dr. Winters who is a Developmental Pediatrician with 'Children with Special Health Care Needs' (CSHCN). She is an awesome doctor and it was a GREAT appointment. We only saw her once before, last september so I wasn't sure how today would go. This was supposedly going to be yearly appts. Not so anymore. We discussed everything under the sun about Josh...from health concerns, developmental concerns to ways to keep him healthy. The only bad thing today at all was the fact that we go mis-info on a previous diagnosis for Josh. We were told Josh's Angelman Syndrome test came back positive, and today found out it was negative. She even called down to Salt Lake and talked to Josh's Genetics Dr. to confirm it was negative. Some nurse screwed up royally (but we don't get into it). I went into the appt with an actual list of things that I am concerned about behavior wise with Josh. Since he is complex with multiple things going on, I wondered if the struggles we have are just part of what he already has, or have we missed something. Josh has steadily gotten very, um.... how do I put this nicely?? ..........WILD and crazy. He is very all over the place, never focusing, always moving, climbing things unsafely, making messes, unwilling to sit with people, yada yada yada. I know most parents always think there child is the worst one out there at times, but I really wondered how several months ago (and granted he was sick and not full of energy) he was a mellow, easy going kid who was semi-calm..... to this WILD and out of control boy who I literally can't keep up with anymore. Where did my Josh go? He is head banging, hitting himself, throwing things, into everything under the sun, climbing on everything he can and usually falling because he is not coordinated enough, hyper-active (putting it mildly), won't sit at all, ect. I know 3 year olds are active. But this?? I really was thinking something was going on, but had to idea if it was sensory or not. After a long talk (like an hour and half!!) with Dr. Winters, and her asking all sorts of odd questions she finally sat back and told me I was not crazy, he is a handful and a half, and probably too much for me to be handling right now. I thought I was just being a wimp! She then told me what has completely surprised me in a way, but also made me so excited that my mommy instinct was once again right. Josh has ADHD. He is at high risk for it with his neurological problems anyway, but she told me she is 100% confident we will get this diagnosis at some point soon. Most doctors are very hesitant to even consider ADHD in a 3 year old, but she told me there couldn't be a more textbook case than Josh. He has all the risks factors for it, and all the signs for diagnosis. It totally made sense to me though. I have blamed some of his hyperness and behavior issues on his being developmentally delayed. But lately..... I am just in over my head. I can't even look away from him and he is into, onto, or under something so fast I can't even waddle over fast enough to stop him. I haven't been very vocal about how hard things have gotten with him, but it has. And now I know why. Now I know I am not crazy and wimpy, that even Dr. Winters told me she can't imagine how my family is holding up with him right now, and that there is something else going on, without a doubt. But...... what do you do with a 3 year old who has ADHD? Our plan for now is to go back to see her the end of january and if things have not improved with his hyperness and lack of attention, we are going to look at some meds for him. She thinks he might be able to pick up on speech and develop the language skills a bit faster if he could focus. I guess it really could be impeding his learning. Sad that I didn't realize this. But once again... the sooner we get treatment, the better off he will be. We learned that with Trevor and autism, and I will do what it takes for Josh now too. He is going to start back up with Occupational Therapy and Speech through the Primary Children's rehab, since he is not doing therapy (oops!) right now other than what they do at school. I dropped the ball on that one and after being told by two doctors in two days that I should not have let him have the summer off (and part of fall now too..) I am feeling that big mommy guilt. I just was enjoying not running to therapy for him too. I already am doing in weekly for Trevor... I just was not up to doing it yet. But I realize it is important and I need to get him back in as soon as possible. And we'll get there.

So.... now that this update is really long.... I am done. Josh just keeps me on my toes constantly. Literally actually. It's kind of hard to be on 'bed rest' or 'scheduled resting' and keep up with him. There is no sitting around when he is awake. I am just glad there isn't a lot of times I am alone with him because of school and naps. I just need to make it about 8 more weeks and then heal up from the C-section and I will be good to chase him all day long. Hopefully. LOL!

6 comments:

Tanya said...

Ohhh dang. How frustrating to have been so mis-informed. I hope you do survive the next few weeks and that he improves with the changes! Take care!

Brittany said...

I am so sorry about all of this. I wish I lived closer and could help.

Amy said...

I to wish I lived close so I could help. It kills me sometimes know if I lived there I could come get Josh and give you a break. Now that they have your contractions under control I hope they stay that way. It's way to early to deliver that baby. I am glad to hear that Josh is where he needs to be size wise. It took a long time to get him there. Good Luck with everything and we will always keep you in our prayers.

Deb and Spence said...

Crazy! So glad to know there's an explanation for his wildness. I don't blame you for skipping the therapy. With so much to do it's nice to have one less thing, but hopefully it helps him and you out a lot!

Chantel and Brian said...

I need to start coming and getting Josh a couple of times a week. Serious. I'll talk to you about it tomorrow when I come up. Really, no Angel Man's Syndrome? Wow. Well, then. the ADHD does make sense to me. I love the blanket pictures and the video! Keep taking it easy. Kaitlyn shouldn't be meeting anyone for a while yet ( :

Tanya said...

Ok the video clip finally worked for me! That is so stinkin cute! :) I lvoe it!