Tuesday, September 29, 2009

Another appointment done

Today was Josh's appointment with the Developmental Pediatrician, Dr. Winters. I really liked her. I never know what new doctors are going to be like and if we will 'click'. Because one thing I have learned in the last couple years is that having a doctor you can just sit down and talk to, makes all the difference in the world. Dr. Winters was great. She sat down and had obviously read through his file beforehand and was very easy to talk to.

We basically talked about Josh's problems all together and how they relate to each other. When you see more than one doctor for things, you don't really talk about the whole picture all that often. When we go to the GI doctor, we don't talk about his neurological problems, ect. So today we talked about all his problems, diagnosis' and how they relate to each other. She provided some good insight into maybe where we are going with him and what kinds of things we can expect. She hopes that we can get the cause behind his neurological disorders diagnosed soon. She agreed with the testing we have coming up (MRI, Sleep Study, EEG, and hopefully Genetics) and said she was very interested to see what we find. The only medical suggestion she wants us to do is to see an Opthamologist. She said that they can actually diagnose some neurological problems that way. So we are going to get going on that. Other than that, she said he looks really good. He is getting all the services he needs and seems to have therapists that are on top of things. She did notice his Dyspraxia and said it was quite noticeable... but then laughed cuz she said she is trained to do that.

The only thing that made me kind of sad was that his head has not grown AT ALL in months. With his Microcephaly and Brachycephaly we should know to expect this. So she is going to suggest an MRI at the earliest time. I am a little nervous about that.

But all in all it was a great appointment and I learned alot of medical information about some of his diagnosis. She just reiterated what I already knew: he will progress in his own way and we can't expect that he will 'catch up' to other kids his age. It makes me so sad for him. I know he doesn't know any different and he is an amazing kid at adapting and working through all his disabilities, but I just wish it didn't have to be like that. I wish life was easier for him, but I also know Heavenly Father has a plan for him and he won't be forgotten.

Out of all Josh's problems going on right now, she agrees with his neurologist that the biggest concern is Josh's Speech. Or lack of to be more exact. But she said he is a classic child with Speech Apraxia, which his speech therapist has already diagnosed pretty much. There is alot of controversy on that diagnosis in general. Some specialists think you can't officially diagnose it until kids are 5 or so. But she agrees with Jill (his SLP) that Speech Apraxia is for sure going on. She said you can tell by his mouth position and the sounds coming out that he is not being able to motor plan orally to form words. So this makes me feel better now about this being a good diagnosis for him. But where we go from here.... I don't know. Jill is coming to do speech therapy with him tomorrow and I can't wait to pick her brain.

So that was my morning. Dr. Winters addressed the stress of having a child that requires so much and let me know I am doing a great job with him. I have never had a doctor tell me that, so I was a little surprised. She told me she has no doubt whatsoever that the reason he is doing this well is because I have done so much for him. That made me feel better and made me realize once again that it is so worth all the time and effort I put into therapy with him. It was a good day. I can't always say that walking out of Doctor appointments with Josh. So hooray for today!!

Monday, September 28, 2009

New Changes

Welcome to my new/old blog! I have made some changes and I am sure you will notice more changes coming. Tomorrow will be my first "holding nothing back" post. Josh has an appointment with a Developmental Pediatrician with a program called Children with Special Health Care Needs or CSHCN. We have been waiting for 3 months for this one. Josh's neurologist and the genetic doctor pushed for this. I'll let you know how it goes.

Sunday, September 27, 2009

A blog overhaul

Our blog is going to be having some changes in the next few days. I have decided to use this blog for more personal feelings, emotions ect. I have a special needs blog that I post on and I love. But sometimes I feel like I am two different people.... because I only post the bare minimum of my thoughts and feelings on this blog. Since I don't have alot of time, I am going to start using this as my journal and therefore it will be more thoughts and feelings as well as updates and ect. of the family. Some times I wonder if I could help everyone to understand what we as a family go through alot more accurately if I just post what I feel. So here goes nothing. Let me know what you think. I don't want to lose any of you already reading this blog. Any thoughts?

Saturday, September 26, 2009

Brothers for life

Aaahhh..... isn't it cute???

It's so fun to see the boys letting Josh do things with them more. Up until the past couple months they have always referred to him as 'baby Josh'. But lately I have noticed them (more Trevor) trying to play with him and have fun with him. Last night we had movie night. And before the end of the movie Josh and Jordan ended up like this. I love it!

Thursday, September 24, 2009

I heart the Sleep Doctor!

So today was our appointment with Dr. Pfeffer, a pediatric sleep specialist. I absolutely love her! She was great and Josh even thought so since he climbed up in her lap during some of our appointment! That is not normal for Josh to do if he doesn't know the person. But she was great.

Anyway, the verdict? He definately has a problem! Ha-Ha... like I didn't know. But all kids have issues with sleeping at some point and all mom's deal with it at some point. At times I have wondered if maybe what he does is normal. But today I found out that it is very unusual, and we need to get it solved since it can lead to long-term problems. First of all, I learned alot about him personally. She was telling me about a lot of new studies that prove kids with developmental delays, preemies, and problems like Josh's have a high risk of sleep disorders. What his sleep disorder is..... is the big question.

She says her gut feeling is the wakenings are reflux related. She was surprised he hadn't had the Nissan surgery done when his G-tube was placed. So that is her biggest theory. Although she said with his neurological problems, she still wants to rule out 100% that he is not having seizures. So the first thing we are going to do is a overnight sleep study down at Primary Children's Medical Center. He will also have a full night EEG done as well then. If the EEG looks normal and they don't see any other obvious problems, he will have a 24 hr. PH Level done. This will require a 24 hr stay at Primary Children's as well. Then if that comes back with a reflux problem then she will be suggesting to his GI doctor to have him referred to the surgeon for the Nissan Surgery. I haven't talked to his GI doctor yet to let her know that Josh has been vomiting lately.

So in the meantime she gave us some Trazadone to help him sleep at night. This won't change any underlying problem going on, but should help him sleep better. We'll see.

All in all, I am very happy with our new doctor and I am glad I have finally have gotten in to get this whole sleep thing under control. Believe me... I can't function much longer on waking up every 1-2 hours at night! This has been going on for 27 months (hence how old Josh is, LOL)... so it's about time. I'll let you know how the meds work. Wish us luck!

Wednesday, September 16, 2009

EI Carnival

Early Intervention had a Carnival tonight for the kids. Brothers and sisters of the kids were also invited. Since Scott has been sick, I took all three boys by myself. Crazy? You bet! I forget how one-on-one Josh is and just trying to keep him from hurting himself the bazillion times he fell is a full time job. Trevor and Jordan did awesome and had fun even though we didn't get to do all the stations they had set up.

Here is Josh at the Bubble Station. He was loving all the soapy water he got to put his hands in. I know everyone around him appreciated him wiping his soapy hands on their shirts since he can't stand to have them dirty. It was great apologizing for that a thousand times.

And here is where Josh spent most of his time. Riding down the track on this cute toy. To say he loved it is an understatement. He got more turns than any other kid even though it took him three times as long to climb on. To say there was gnashing of teeth when we had to leave is putting it mildly.

And now for the highlight of the evening. Meet Freddy, Buddy and Tiger. These are the goldfish all THREE boys won at the ball toss. Yep... even Josh made it in the cup. (if you know anything about Josh you know he throws very, very well) Trevor and Jordan had them all named before we got home. Thank goodness for a 7$ fish bowl kit at walmart for goldfish.

Stay tuned to see if we have to do any fish-funerals in the coming days.

Saturday, September 12, 2009

I thought an update was in order since we all had new things going on this week.

Scott had a good first week of work. He is adjusting to sitting in a training class for 8 hours a day and getting up at 5am. So far things are going good.

I had to be the drop off/pick up from school chauffeur this week... with Josh in tow. Up until now he has been able to stay home with either Scott or I and take his naps when he wants. That was all over this week. He did OK with the new change, but it made things crazy for me. I have to say I like the quiet in the mornings now with it just Josh and I home.

Trevor is doing OK at school. He has had a couple rough days and we are still working things out, but he is slowly coming around. I have a meeting with the district at the end of the month for his yearly IEP. I hope to have all the wrinkles ironed out with him by then.

Jordan is absolutely LOVING school. He is so excited every day to get in the van with his backpack and he had done amazingly well. He already has 3 girlfriends and I have been told by his teacher 'is such a delight to teach'. It's so fun to see how well he has done.

Josh is healthy for now. We have been taking extra precautions to keep him that way. He started a new group therapy this week so it is like starting over. But this group is right here in South Ogden, and at a time I can make it while Jordan is in school. So it will be a great thing. He is still having some big problems with sleeping and now that we have all his medical problems under control, we are doing something about it. He has an appt. with a Sleep Specialist on Sept. 24th. I am just hoping I can make it to then...he is up so much at night right now. I'll keep you posted on that.

So that is our life right now. Busy as usual. But we are enjoying it and I am so glad to have the kids in school and Scott back to work. It is all working out so well.

And I was looking through my pictures on my computer and found a couple I thought I would share. Enjoy!

This is just a couple taken when I took the picture that is our header for the blog. I just love Trevor's expression in this one.
And this pictures shows a typical mad face of Jordan. I love it!

And this picture is the day that Josh finally mastered climbing into a chair. He was so proud of himself! I couldn't resist taking pictures, but never posted them.

Sunday, September 6, 2009

Getting our Life back together

Since Scott lost his job in June, things have been a bit tight and stressful around here. With this economy it has made job hunting pretty much a joke. I feel so bad when I hear about other people losing their jobs as well.... because I know the stress that comes with it.

So for those of you who don't know, Scott is employed again! It is not a permanent job, or one he really sought out, but sometimes you do what you have to do. He is going to be working for Teleperformance as an AT&T Rep. It's full time and that is good. It's not great pay, but he may look into a 2nd job once he is trained at this one. All in all we are just glad to have him employed and getting some income finally. He still is looking for a better job and has a couple possibilites that may come about at the end of sept or first part of October. So it's not all said and done yet.

So he begins on tuesday and will work 6am-2:30pm monday-friday for 5 weeks. Then he will switch to a 2:30-11pm shift after that. He will probably miss alot of family functions this holiday season, which bums me out, but we'll get over it. Thank you for all the love and concern for our family, we have amazing friends and family. Love you guys!

Tuesday, September 1, 2009

School has begun!!!

I am a little late at posting this. But the kids are in school!!! This is actually Trevor's second week of school, but Jordan started Kindergarton yesterday. He loves it! I am loving it as well... what a nice break!

I had to get a picture of the Cubs backpack. Scott was so proud!