Thursday, January 29, 2009
A Preview to our Madness!!
Sunday, January 25, 2009
Jordan loves attention
And next... we are going to do some home improvements in the next couple weeks. It all started with replacing blinds that are ready to snap any day now, and has ended with repainting the whole living room/kitchen area as well. I have wanted to repaint for awhile now, but thought it would cost alot more than it will (yes I am not very keen on projects like that). My uncle Mike used to do painting for a living and so he came today to help us figure out how much paint we need, ect to get going. So I may seem to disappear for awhile in the coming weeks. It is going to take alot of time to do it. But I am sooo excited to get going!
Wednesday, January 21, 2009
This first picture is Josh a couple nights ago. Jordan has a friend named Roman, who came to play and brought newspaper hats for the kids. Josh was very mesmerized by the whole thing and so we had to get a picture.
Today my mom also took me shopping for my birthday. It was a wonderful break from everything and I got some fun stuff too. After we were done shopping, my mom came back and stayed with the kids (minus Trevor, he was in school) while Scott and I went to a very belated birthday lunch. It was fabulous! Thanks mom!!!
We recently got Mario Kart for our Wii and we made my mom play today. It was sooo funny watching her play! She was laughing so much and made us laugh really hard. She did good and beat both Trevor and Jordan. Way to go Mom!!!
Sunday, January 18, 2009
A little late....
Happy belated birthday Parker!
Just a little catch up for our family as well.
It's been a busy week, but very productive. Josh had his two tests done and now we think (knock on wood) that things will calm down in that area. We are currently transitioning him to thin fluids, but it's going to take longer than I thought. He drank some water today in nursery and had a marshmellow in his mouth (I didn't know this at the time) and choked. He threw up on the table, freaking out our new nursery leader, it was lovely. So we need to keep a real close eye on that. But we'll work at it and see how things go.
Trevor has been sick this past week, but is feeling better now. He is supposed to give his first talk in primary next week, so we'll see how well that goes. Up until now Jordan has usually done things assigned to Trevor because he won't. But he says he will this time. Here's to hoping!
Jordan is doing great too. He has been a bundle of energy lately! He spent some time this past friday with my mom and ended up going to a hair appointment with her. That is something I would never attempt with him. But he was an angel and kept the entire salon entertained. That's my boy! What a flirt! He is so excited to get back to school since it has been a long weekend for us with the holiday.
Other than that we are just chuggin along, doing good. Hope everything is well with you!
Thursday, January 15, 2009
A Silver Lining
First of all, Josh did great! He cooperated and ate and drank everything we gave him, even with the barium in it. His swallow is looking good. He had a tiny bit of pooling (like it being stuck in the back of your throat) with the thin liquids, but he did awesome on the pureed foods. So basically he is not aspirating anything anymore and the pooling is minimal. So this means we can FINALLY after 10 months, go back to regular thin liquids! We are going to wean him off the thickener this week and see how he does. I did use a regular sippy cup tonight with gaterade to see how he reacted. He can't gulp with a sippy cup since it requires some good sucking. He did OK, but was not really into it. Change is always hard for him.
So after this weeks tests we have found out he does not have a swallowing disorder, and the pooling is very minimal. Basically his problem is a severe delay in oral-motor development, and sensory issues on top of that. So we will just keep working on him learning how to move his tongue around in his mouth, chew and manage that together. A pretty daunting thing for him. We'll see on Feb 4th what the team at the Feeding Clinic says at Primary's, but it will be along those lines.
So while we are basically where we thought we were, it is such great news to finally be able to give him normal drinks and not use the wedge to position him for feeding! Progress is great!
Tuesday, January 13, 2009
Another day, another test
Her suggestion? More therapy. Big surprise, huh? She is putting her recommendation into the team of therapist/dr's in the feeding clinic (which he starts feb. 4th). She thinks he needs to see an Occupational Therapist at the rehab that specializes in Sensory/motor problems. She may suggest more after his Swallow study he has on thursday down at Primary Childrens.
So when, do you ask, am I going to find time to add another therapist?
I have no idea. I'll get back to you when I find my sanity!
Saturday, January 10, 2009
Just a quick note
Wednesday, January 7, 2009
New things at our house
For those of you who don't know, our basement is not finished. It is pretty big, around 1400 square feet or so. One side is blocked off for storage, but the main part has become a modge-podge of playroom, tv area, exersize area, food storage.. ect. So I decided that we needed to significantly downsize the toys... most of them being choking hazards for little Josh. So while Trevor and Jordan were at school, we went through the toys and got rid of about 90% of them. We re-arranged down there and hung up a swing for Josh. We plan to get a therapy swing for him, but until then this one will do.
So here it is. Just remember it is cement walls and floor. There is no framing or anything, so it's not pretty.
Here is the 'tv area' with chairs. It is really nice to have since we have cable running to the TV so the kids can watch Disney or something down there.
Here is the 'playroom/therapy' part. I say that because the mats and different rugs, ect is something that Josh has a hard time with walking on, so it does double duty. And of course his swing is there too.
And here is Josh in his swing. You can't tell, but he absolutely LOVED the swing. We got more smiles and laughing out of him than we have ever heard. It is too hard to get pictures of him smiling.
Monday, January 5, 2009
Spoke too soon...
It snowed today here so the roads were not great when I had to take and pick up Jordan from preschool. Josh is still fighting a cold and I hated taking him out when it was so cold. Then Josh had Physical Therapy this morning and he fell down some stairs. We are currently working on climbing stairs now...and I don't think I need to say that it didn't go as planned. He only fell down 2 stairs and his therapist caught him, but it was enough to upset him.
Then this afternoon he was walking around, following Jordan, having a fun time, and he fell (I know, what else is new with a kid with balance probs?), and managed to hit the couch and put his tooth all the way through his bottom lip. He bled forever. Jordan was freaking out telling me to stop the blood or he was going to die (can we say Drama Queen?) and not making it any better. So I decided to get a picture and show how our week is starting out. Fun, huh?
I finally took some pictures of Josh with his DAFO braces on. Since I forget that not everyone has become fluent in medical speak.. as I call it.... the DAFO braces are for his toe walking and ankle turning. DAFO stands for Dynamic Ankle Foot Orthoses. He is doing great with them and although he still falls alot, he is more stable on his feet.
In the picture you can only see the blue part of the brace. There is an inner white part that is almost up to the top of his sock. The blue part is like an outer brace that stablizes it even more.
Sunday, January 4, 2009
Some updates...
I thought with the Christmas break things would be slow and relaxing. We had two whole weeks of no school, no therapy, no Dr. appts, ect. Boy did I underestimate that!
It was a nice break from the therapy and ect, but we kept pretty busy anyway. This past week we were able to spend some time with Scott's family. His grandpa passed away on the 30th of December, so we had a funeral. It was an emotional time, but we were also able to see the family we don't see very often.
The kids spent alot, if not all, of the break sick. Josh is still struggling to get over a cold and cough. His week starts out tomorrow with therapy in the morning. Hopefully I don't have to reschedule since it is a pain, but we'll see what tomorrow brings. He also has tests next week so we hope he gets back to normal fast. He has a swallow study scheduled at Primary's on the 15th. He also has a Clinical Feeding Evaluation on the 13th, so it will be a very busy week.
Jordan is more than ready to go back to preschool and get to play with his friend Roman again. I think he needs a break from Trevor!
Trevor is already thinking of ways to not have to go to school tomorrow. He always struggles with going back to school after an extended break. That is the autism coming out. He had quite a bit of problems in school right before the break, so we are going to see about getting him some special help with a new councelor now that school will be back. We'll keep you posted on that.
I am looking forward to the kids being back in school and Josh being back in therapy. We have had some struggles come up with Josh these last couple weeks and we need some advice. I really did enjoy and needed these two weeks of no school/therapy, but I am ready to get back into the swing of things.
I hope everyone had a great holiday season and Happy New Year!
Friday, January 2, 2009
The things my kids say....
This first one is the conversation I had with Jordan today while I was bathing the boys. I was actually scrubbing their hair and dumping water on their heads at the time.
Jordan: Mom you scared me outa the crap with the water. If I were you I wouldn't do that again.
Me: Scared you outa the crap?
Jordan: Yep.. that means it was really scary.
Aahh, isn't it cute??
Then tonight I was tucking Trevor in bed. Currently he has this huge bear rug of mine, from when I was little, on his bed. You know the kind with a big head? Ya one of those.
Me: Get good sleeps tonight since you will be at Chan's house tomorrow.
Trevor: Um, mom I have a problem.
Me: What...??
Trevor: That bear is looking at me. Can you please turn his head to the other side of the bed, it's making me scared.
Me: (laughing) Yea I can... I didn't know it was scaring you.
Trevor: Only when I go to sleep and it looks at me.
Aren't kids funny sometimes? Mine sure make me laugh alot.
Thursday, January 1, 2009
Bring on the New Year!
Some of the things I have learned this past year:
~I am a lot stronger than I thought. I have had to deal with things I never thought possible and I am still here.
~My kids make me laugh... alot.
~I truly could not make it in this world without my family. They have been an absolute blessing to me, more this past year than I can ever remember. I truly have the best parents, sisters, in-laws ect.
~I have some wonderful friends that have been willing to listen to me, or help me at the drop of a hat. It's overwhelming how much support I have gotten from people that aren't in my family.
~I have come to terms with the fact that Josh will always have struggles that other people don't have, and I am willing to do what it takes for him to learn as much as he can to lead as normal of a life as possible.
~I have also come to terms with the fact that while other moms run around to soccer, dance, tumbling ect. my life (for the next year at least), will revolve around Dr. appts, therapy and clinics.
~I have learned how invaluable Therapist are. Josh truly has the best therapists. Believe me, we have done Early Intervention before and this time around it's sooo much better.
~I have learned that God always has a plan for me, and as long as I keep the faith, everything will be OK in the end.
So Goodbye 2008, you were not very good to me... but bring in on 2009! I am ready for you!!!!!
Thank you for everyone who has been such an inspiration to me and my family. We love you all!