Wednesday, April 25, 2007

In her own words

I found a link to this blog today and wanted to share it with others. I am simply amazed at this woman's power and strength.

Take the time to read her blog. Here is a link to a story about her precious daughter Emma
It doesn't end there though. Heather's an inspiration to us all.

Tuesday, April 24, 2007

Simply Amazing!


I am just astonished at what Wesley is doing these days. He is on such a roll that I can't seem to keep up with all that he can do! It seems like every day, he does something new or something on his own that we've been working really hard at.

I try to limit T.V. because we use it as a reward for him when he has worked hard in therapy that day. We have PECS of Jacks Big Music Show from Noggin and Thomas the Tank Engine on PBS Sprout. When he earns the T.V., we put the pictures on the top of his PECS folder and he gets to choose. Not only is he making a choice, but he's actually saying the choice too! He says either "Jack" or "Thomas". Not just once or twice, but EVERY TIME! It's amazing. There are a few times where we didn't even ask. He just pulled the picture off, walked up to me and said the name of the show he wanted!

The other night, Tim and I took the boys out to eat. We went to this place where you order your food and sit outside to eat. It was such a beautiful day. Tim set Wesley's bottle of water he had ordered on the table. While we were sorting out the food, Wesley pointed to the bottle of water. Tim asked if he wanted a drink and he did his happy hand flap! He was telling us that he needed a drink of his water! We made such a huge deal out of it. We looked kind of weird, I'm sure, but I don't care! My boy can communicate with us! His is a major thing for us. It means less tantrums, and less frustration!

We've been going for walks around the neighborhood and Wesley has been holding our hands and walking nicely beside us. Two months ago, he would have thrown a fit for not being put in the carriage. Going for walks were not possible. We went for a pretty long walk on Saturday and he did so well. We went to a playground at the Elementary school and he went up and down the slide like a big boy.

It's taken us 7 months to get this far, but I wasn't prepared for it to go so quickly. He is such a hard worker. I'm more and more confident that he will be mainstreamed into a normal classroom as he gets older and that maybe we won't have to work so hard to keep him up to where his peers are.

Sunday, April 22, 2007

Surgery Date

We have a tentative date on the surgery for Casey. It's Thursday, June 14th. It seems like it's so far away, but we have allot going on next month so it's okay. Casey is being baptised on the 20th of May and I am so glad it's happening before the surgery. We aren't extremely religious, but we do go to church when we can. It will make me feel better to know he's recognized in our church before surgery though.

The doctor will be back from vacation on Monday and I'm anxious for his call. We will finalize the details and I want to know exactly how the surgery will go, how big his incision will be, and what we can expect with the healing process. I'm nervous about bringing him home because he sits upright in his car seat and I don't want him in any pain during the hour drive.

Already in his short 7 1/2 months, I can tell he doesn't give up without a fight. He has such a beautiful and sunny personality, I often wonder how on earth he can be my child. I'm not always doom and gloom, but man is he always happy! He can go from crying to laughing with one touch to his knees or belly. He knows exactly how to get what it is he needs or wants. It amazes me how different he and Wesley really are. I keep forgetting that I don't need to show him how to do everything unlike Wesley. He needs to learn things for himself and he actually enjoys experimenting with the world around him. It's strange to me to need two parenting styles. I didn't think my children would be exactly the same, but I didn't think they would be so drastically different either. Where I need to sit and help Wesley focus and learn what he needs to do, Casey just figures it out on his own. Life is strangely amazing.

Wednesday, April 18, 2007

Adventures in Dentistry

Today was Wes' first trip to the dentist. I was dreading this appointment but it had to be done. He hates to have his teeth brushed and has started to grind his teeth. Those and along his incessant need to suck on his blanket warranted a trip.

All morning, I had been telling Wesley what was going to happen today to kind of prepare him. I told him we were going to see a new, really nice doctor and he would look inside his mouth and admire his beautiful teeth. It seemed to have worked...well, sort of.

When his name was called, I had to drag him into the hall that lead to the exam rooms. He wanted to run around the waiting room and was mad when I said he couldn't. So, we make our way to the exam room and he seems to be doing good. He voluntarily climbed up onto the chair and sat to play with his busy beads. The hygienist gave him a ride up and down. He was a bit skeptical about that. Once the dentist had come in, he seemed pretty relaxed. He had Wes sit on my lap facing me and then laid him back on his lap. He was able to get his fingers into Wes' mouth and looked around. He said that his teeth looked very good and to keep doing what we've been doing.

We've pretty much been fighting him every night and some mornings (when I can pin him down) to brush his teeth. It's a complete, all out battle, but it has to be done. We go back in 6 months for a cleaning. Now that should be a real trip!

Trip to the E.R.

Things just keep getting better and better around here.

Last night, after Casey had been in bed for 2 1/2 hours, he woke up coughing. No big deal I thought. I listened to him for a second on the monitor and he sounded funny. Raspy and hoarse. So I headed upstairs to see if he was alright. He sounded terrible. I picked him up and rocked him for a minute and the gave a hard cough and then threw up all over me. I called for Tim downstairs to come help me. We stripped him and decided to take him into the bathroom and run the hot shower. That wasn't working. He sounded worse then ever. When Wes was 11 months, he had bronchialitis so it was recommended to us that we buy a nebulizer. Tim got the neb out and we gave him a treatment. He cried miserably during it and could barely catch his breath. At this point, I had already called the pediatricians on-call service and was waiting to hear from them. I couldn't wait. I quickly got myself dressed, and Casey redressed from the vomit incident. I called my mother-in-law, grabbed Casey and ran out the door telling Tim I would meet him at the E.R. We got there at about 9:30 and the nurses bumped him to the top of the wait because he was an infant. By 9:45, they had did the intake of him and by 10:15, he was in a room waiting for the doctor. They did a swab of his nose to check for RSV, but it was certainly croup. At 11:30, they gave him a dose of prednisone and we were home by 11:45pm.

He was such a trooper through it all. Flirting with the nurses and showing off for the doctor. He whined a couple of times but we laid him down and he curled up with the blanket they gave him. While they were taking his temp. (rectally, I might add) he peed on the nurse and his pajamas so he was in just a onsie that was thankfully in the diaper bag. He slept surprisingly well last night, and has been exhausted all day today. I'm just thankful that I listened to my gut and took him in. I can't imagine what it would be like if I waited until morning.

Tuesday, April 17, 2007

I'm trapped

Today is one of my dark days. It's been coming on, but I've been trying to push it down.

I had to run to the post office today to mail out a package. Who would have thought that the post office would have a line out the door at 9:30 in the morning. Well mine did and Wesley decided he did not want to wait in that line. About 1 minute 30 seconds of stepping through the door, Wes thought it was a great time to have a tantrum. A full on, throw down, kicking and screaming tantrum. Let me paint a picture for you. I had Casey in the stroller, a large package in my hands and I'm trying to get my son up off the floor with a room full of people watching me. I threw down the package, picked Wesley up and threw him over my shoulder. Grabbed the box and pushed Casey out of the building using my hips. With stares at my back, I managed to get us out and to the car. I put the boys in their car seats, got in behind the wheel and cried. I cried for myself.

I am so tired of feeling trapped by a two year old. I can't go anywhere for fear of tantrums, meltdowns and embarrassment. It's not easy carrying around a 20+lbs baby and running after a quick two year old. I should have known not to take him. I should have known that this would ultimately end in disaster. I set myself up for it. How am I supposed to go on with daily life and do daily things when I can't leave the house? It's safe here. Wesley and I know what to expect. I don't care if he has a tantrum here because no one is staring or judging. The only place we can go is to department stores with shopping carts. He's contained and he's happy to ride in them. Other then that, it's no go. I have to find a playground that's completely fenced in or we don't go. I would love to take him to some activity centers, but I can't keep up with him. I can't juggle Casey and drag him around by his leg at the same time. Others frown upon leg dragging.

I love my child, there's no denying that. I find myself wishing for just one day of normalcy. One day where he and I play and talk and laugh. Just one day.

Saturday, April 14, 2007

The "S" word

No, not that "s" word. Surgery. One of the worst words any parent wants to hear I think. Casey's appointment went horrible. It took all that I had not to punch the nurse who did his catheter in the face. My mother instinct was so strong yesterday. I told Tim that I wanted to yank everything out of him and just take him home. He's only 7 months, but the look of sheer horror and pain in his eyes cut me to the bone. I could hear "why are you doing this to me?" in his cries. All I could answer was that I loved him and I'm sorry.

So after 3 hours (from start to finish) it was determined that the obstruction in his kidney has indeed gotten worse. The fluid in his kidney is taking even longer to drain out and that isn't good. On the upside, his kidney is very healthy and producing 50% of the work. Neither kidney works at 100%. They share the work load and this is true for any healthy person. Tim and I trust the doctor and know that he is only looking out for Casey and the health of his future. He is actually rearranging his schedule so he can preform Casey's surgery in the next month. He takes the time to explain everything from stem to stern and encourages questions. He even made sure that I could page him before he left for vacation so he could go over the results of the test. He puts us at ease and for that, we trust him.

Of course, my anxiety is at an all time high. With two kids who have health issues, how can it not be? I'm learning to take it one day at a time and relinquish control where there is no control in the first place. This is hard for me. I'm the one who is in control nearly every day. I decide what happens and how it happens. To not have control over this is like losing a big part of who I am.

My mission, if I choose to accept it, is to let things go. Let them progress and give my input where needed. Inform myself as much as I can to give the right input and trust in others. There is a bigger world out there then just me and my boys and I need to let them in.

Thursday, April 12, 2007

I have to do what?

About 2 weeks ago, I took Wes to his pediatrician to go over the diagnosis and see what he had to say about it. In his own way, he still refuses to admit he was wrong and should not have put off our concerns about autism. Anyway, I asked about having his heavy metals tested including mercury, lead, and aluminum, just to say I did it. He was on board and made a note to call the lab and set these up for us. He even sent out referrals to a geneticist and to a neurologist. Both of these were referred to us by the Developmental Pediatrician. Well I got a call from the nurse at the Pedi's office and she started to explain that in order to test for mercury and other heavy metals we need to do a 24 hour urine collection. A WHAT! This child isn't even close to being potty trained, has no idea what his potty is for, and has no desire to sit on the potty for anything other then make it go off and sing (yes we have a potty chair that sings. It also knows when he goes and will praise him with another song). So Tim and I have to dedicate an entire weekend day (and night) to following him around while he's naked to collect his urine every time he goes. Oh, this has fun written all over it. While he's napping and sleeping over night, we have to tape a collection bag over his you-know-what to collect any urine he has while he's sleeping. That sounds like even more fun! Wes is a total sensory freak and I can see the battle already starting with trying to tape a bag around him.

Am I just torturing him for no good reason or will this give us some insight into the possibility of where his Autism came from? One part of me wants to say "Nah, he's fine", the other "If you don't do this, you will regret it later". So regret it now and get it over with, or regret it later and hate myself. I'm sucking it up and getting it over with. It's only 24 hours and the boy loves to be naked. Another sensory thing with his clothes.

Tomorrow, we are taking Casey to a Children's Hospital for his kidney. We are doing the MAG 3 scan and I am not looking forward to it at all. His urologist said that it wasn't a matter of life or death but it does look worse then it had before and he wants to know how bad. He said he wouldn't do surgery for another month if he needed it. He explained that his left kidney would stop producing much of his urine so it could drain off while the right kidney picked up the additional slack. Once the left kidney was sufficiently drained, it would start producing again at normal capacity (well normal for him). The cycle will just keep repeating until it is fixed. Keep him in your thoughts and prayers.

Monday, April 9, 2007

Happy Easter!

I know, a day late and a dollar short!

We had a good easter. The boys didn't get a whole lot because neither of them "gets" what Easter is about. I bought the boys a toy they could each enjoy together and that's about it because we're on a really tight budget. The toy has a fan and it blows these plastic balls through a tube and out into the air. Then they go down a hole and around a slide and back into the toy itself. It's really cute. Wes is starting to enjoy it and Casey is starting to get used to the sound.
The boys got lots of clothes for summer, some diapers and formula which is fine with us!

It's hard not celebrating the holidays like I used to when I was little. Christmas has very little meaning to me because I can't enjoy watching the kids open their gifts. Yes, next year might be different with Casey, but it will still have no meaning for Wesley. I remember waking up and hunting for Easter Eggs before my sister got up. It was so much fun looking high and low for them and then enjoying the treats from our labor. Will Wes ever get to enjoy that too?

On Saturday, we took Wes to see Laurie Berkner! He had so much fun. I'm not sure if the whole reality of it got to him. He was very excited to hear her songs, but did he realize she was on stage singing or did he think he was just looking at a really big T.V.? Well it doesn't matter because he was such a great little boy! He sat nicely and was great the whole time. He fell asleep on the car ride home and we stopped at McDonalds for a special lunch. I was actually dreading the day in the back of my mind because I wasn't sure if he would be able to sit that long, but he did and I'd take him back in a heartbeat!

Friday, April 6, 2007

Bad news


We have bad news about Casey. About a week ago, we had an ultrasound to check Casey's kidney. He was born with Hydronepherosis which is dilation of the kidney. Back in Nov/Dec we had some testing to rule out reflux and blockage. The ultrasound showed an increase in the fluid so we're thinking the blockage is worse. He will need surgery if the new MAG 3 scan we're having done shows an increase in fluid. The MAG 3 scan is basically a large x-ray machine that takes pictures of Casey's kidney every minute for 45 minutes. It times how long it takes his kidney to drain of fluid. If it takes too long, then there's an obstruction, blockage, or kink in his ureter.

How am I supposed to handle all of Wes' therapies and whatnot AND my baby having surgery? I am going to be a total wreck! The blue skies I have been feeling are once again clouded over. Things start to look bright and then BOOM! A new wrench is thrown into my life. What the hell did my kids do to deserve this? What did I do that my kids deserve all this shit. I'm sorry, but I am just so mad. I need someone to be mad at. More and more each day, I'm leaning towards not having any more kids. I can not go through more medical crap with another child. I can't do that to any other child. It wouldn't be fair.

Will it ever end?

Tuesday, April 3, 2007

Quick update

I've really been pushing the PECS today and getting alot of frustration and resistance. Except when it comes to the picture of cookies. Wes learned this one pretty quickly tonight. He handed me the cookie card about 5 times and each was met with a cookie. Well a Nilla Wafer, but still a cookie. Figures it was the cookie one he'd get first though. I am so stinkin proud of this child. My heart just soars when he learns something new.

What a day..

The ball is rolling!

Yesterday we met with the behaviorist and the preschool teacher who will be working with Wes using ABA therapy. She is super nice and seems like a great fit. She will be starting in the school district this fall and will help with the transition when Wes starts preschool. She will be coming three days a week for 3 hours. She started yesterday with him and I told her to feel free to push his limits. His whining doesn't affect me anymore because I hear it so often. We also started on PECS. We have some general pictures to start out with. The game plan is to start object to object, then picture to object, then picture to picture.

So for example, we will start with animal figures. The BT (behavioral therapist) will place an animal on the floor, say the name of the animal and hold out her hand for Wes to give it to her. Once he's mastered that and echos the name, she will put a few animals on the floor and hand Wes a picture of the animal she wants and say it's name. He's to find that animal and give it to her while using the name. Once that's been mastered, He will need to match a picture with a picture. She has story boards of some nursery rhymes and the last word of each rhyme is left blank with a picture. She will sing the song to Wes, but leave out that last word. Wes is to find the picture that matches that of the Story Board. Each accomplishment, he will receive a reward. I just have to figure that out. I know someone who uses chocolate chips. We might do the same. Every time he masters a skill, we up the anti. So instead of getting a chip for each match, he might get one for every 4 matches once it's been mastered. It changes every time he masters a new skill.

Tim and I went to a support group and it was so much fun. We met a really nice couple who have a son who is much older then Wes, but they were so nice. Tim actually went to school with the dad. They had a Make and Take Night where everyone was able to make visual pieces to take home. You could make a story board, or more PECS or whatever. They had computers and laminating machines to use. Next month is about transitioning into preschool and I will totally be there! We need all the information we can get. I hate going into the unknown. I like to dip my toes in before jumping full force. I want to know what we're getting into before it happens, so it should be a very informative meeting.