Morning Surprise

The other morning, we woke up to a surprise from Wes. When I checked on him the night before, nothing seemed unusual. He was laying in his bed, upside down with his weighted blanket across his hips. I left him as he was. Usually, I go in, turn him around and give him a kiss. It has been rather hot here and I didn't want to disturb him. I'm kicking myself now!

Tim came into our bedroom and said "Guess what your son did". Well it could have been a number of things. He could had destroyed his room, pulled everything out of his drawers, or pulled every book off the shelf. Well none of that happened, but he did pull off his diaper at some point in the night and peed all over his bed and bedding. The diaper I did have on him was bone dry. Was was up and running around his room stark naked saying "Hi, how are you?" The correct answer should have been annoyed, angry, dumbfounded. Instead I say "I'm good. And you?"

Tim walks him to the bathroom to give him a quick shower and I proceed to strip his bed. Everything is damp. From his pillowcase to the beanbags in his weighted blanket. Just how I want to spend my morning. Covered in urine. I still have no idea when he took his diaper off. Was it before he fell asleep or did he wake up in the middle of the night? Did it come off on it's own (doubtful)? We get the boys downstairs to start breakfast and I take the bedding downstairs to start washing. I had to send Tim to a laundry mat to wash his comforter because I was afraid it was too big for the washing machine.

I've learned my lesson. I will now make it a point to go in and check on the boy. Double check that his diaper is secure and tight and that he hasn't taken it off again. I guess I should be grateful that it was urine and not something else smeared on the walls. I've heard the horror stories, but never did I imagine that Wes would do this. His OT was very pleased by this story. She said that it means he's got good fine motor skills. With dripping sarcasm I said I'm tickled pink as well.

Another hurdle over

We are home from Casey's surgery and what an experience that was! This might be along post.

We left on Wednesday night because the hospital is an hour away and we had to check into the hospital for 6am. There was a B&B type place on the hospital campus for families who had children staying at the hospital. They rely on donations to keep them open. We stayed there the first night. Casey does not like sleeping in pack-n-plays but we had no choice. He cried a good portion of the night and Tim and I took turns letting him sleep in the twin beds we were given in our room. This was not comfortable. Of course once he finally fell asleep in the crib, we woke him up to feed him one more time before cut off so he wouldn't be starving come morning.
We were up by 5am to get ready for the day. By 7am, they were ready to get him started. We played in the playroom with him until the doctors came in to discuss the procedure and whatnot. They wanted to give him an epidural instead of a steady morphine drip. It was easier to control the pain and less side effects. I was surprised, but glad that he wouldn't be pumped with heavy narcotics. I was able to take him into the OR which was one of the hardest things I have had to do. To leave him behind was heartbreaking. He was so exhausted that he drifted off to sleep in no time and very easily. I left the room in tears. The surgery took nearly 4 hours. Because he was so chubby, they had a hard time getting an I.V. in and the epidural. His ureter was more malformed then we thought and it was a bit harder then the doctor anticipated. There was about 2 inches of ureter that was narrow and small and needed to be removed. They also had to take part of his kidney that had expanded into his renal cavity before they could reattach the ureter. Once that was done, they stitched him up on the inside and used Dermabond on the outside (like superglue). I was a nervous wreck and once his scheduled time to come out had come and gone, I demanded to know what was going on. I couldn't wait any longer. Just as I was getting up to find out if a nurse was going to talk with us, his doctor appeared from the double doors. I nearly hugged him!
He explained to us what happened and what his kidney looked like. They had put in a stint to minimize any leakage of urine. It wasn't long before we were able to go see him in recovery. His recovery went well. By the next day, he seemed more like himself. They shut off the epidural and removed his catheter. Unfortunately, when they removed the catheter, it snagged the stint and pulled that out too! The doctor said it wasn't that big a deal and he does them just as a precaution. We were discharged on Saturday afternoon.
As soon as we got home, Casey started going down hill. His temperature spiked, he was very lethargic, moaning in pain, and listless. We called the doctor right away and were told to bring him back. So back in the car for another hours drive. They did an ultrasound which came back fine. We were admitted for another night. The doctor wasn't sure but gave the possibility that because he was so constipated, that it could of caused his symptoms. By the next day, his plumbing was working just fine and he was back to his old self. We came home again Sunday afternoon and he's been the Casey we are used to.
Thank you to all the wonderful nurses who took such great care of my baby. They actually fought over who would be his nurse for the day. That made me feel good. He made a friend with a sweet little (older) girl. All in all, I am so thankful to be home!

Speech Therapy....again and IEP meeting

Today we had a consult with a ST that is working through Early Support Services. I'm really happy with this one because she will be working together as a team with Wes' OT and ABA therapist. She wants to come and observe the ABA to see what she is doing and then will start on her own once a week. She thinks he needs more then just a monthly consult which I agree. He's using more spontaneous words but more echoing then anything. She will start on her own in two weeks. Next week, she will come back with Wes' OT and observe more.

Yesterday we had the initial IEP meeting where we met his liaison and the coordinator for the special ed preschool. I can't believe this is happening already! He's still my baby. I'm very happy that he'll get more socialization rather then just going to the park and I think he's really going to take off there. Once he gets into a routine and becomes familiar with the teachers, things will go great. I'm very excited for him. I'm having a hard time deciding if I want to put him on the bus or not. Tim thinks we should, but me being mom, wants to protect him. The school he will go to is one block from our house and I was going to walk him to school and pick him up. Now I'm thinking of letting the bus pick him up, but I will go get him after. That way I can talk to some of the other parents (get to know them) and talk to his teachers to see what he is doing and if they have any suggestion on what we can do at home to continue his learning.

So that's 4+ more months until my big baby becomes a really big boy.

SPD

SPD is Sensory Processing Disorder. It's not something easy to explain, nor does it seem easy to live with. In a nutshell, it's difficult for people with SPD to separate the senses around them. There are actually 7 senses in the body. There are the five we all know (smell, touch, taste, seeing, and hearing) and there are two more which are vestibular and proprioception. Big words.

Vestibular is the sense of balance. We all have receptors in our inner ear that send information about the position of our head in relation to gravity. It gathers input through movement and is seen as arousing (excited) or alerting to the nervous system.

Proprioception is the muscle sense. There are receptors in the muscles and joints that send information to the brain. It gives information about position of the body in relation to other body parts. This system is inaccurate if the person has low or high muscle tone. Wesley has low muscle tone. The input it sends is seen as organizing to the central nervous system.

Tim and I went to a seminar on this subject because I firmly believe Wes has a lot of these issues. It's very prevalent in his eating habits and some play. We learned more then I thought we would. I came away from the workshop feeling like I knew my child more then I had before. It actually makes sense. I knew Wesley had low muscle tone, but I had no idea what that actually meant in relation to his learning. Low muscle tone is not about strength. That boy has strength that you wouldn't believe, but his arms and legs are very floppy and heavy. He is clumsy and falls a lot. It was explained to us that low muscle tone just means it takes more work for Wesley to use his body. It's more effort to lift his arms or move his legs to walk. I had an Ah HA! moment. Because of his low muscle tone, he has a harder time learning because his brain is always more aware of where is body is and always sending messages to locate it rather then giving him a chance to focus on what's in front of him. It's also a reason for his rocking and arm flapping. When he rocks or flaps, it's sending messages to his brain that his arms and body are there and working, giving him an opportunity to focus on something else.

So to make this a lot shorter then it would be, we have to incorporate "heavy work" into our day. Heavy work means making Wes use his muscles and joints to give him the necessary input his brain craves to allow him to "regulate" himself. Regulating himself would mean he's able to concentrate and won't need to stim. These should be done for a few minutes, multiple times a day to keep his regulation at an even pace.

I think with all that I'm learning and all that I know now, I should earn a honorary doctorate!

Love/Hate relationship

I actually have a love/hate relationship..with the park. Yes that's right, the park. Let me tell you why.

I love it because I can take the kids out into the fresh air and let them run wild. The park we go to is fenced in so I don't have to worry about someone (Wes) running off and I have to chase him into the street. The particular park we go to is small enough that I can always see Wes, but large enough for lots of kids. It's a great place for Wes to get some social interaction and see how other kids socialize.

I hate it because my son is different. Instead of running around like the other kids, he sits on this bridge, flapping his arms and kicking his feet. I hate it because I can't sit and let Casey play for fear of Wes taking off or hurting another child and I'm not keeping an eye on him. I hate it because some of the children stare at him like he's a leper. I feel like a bad mother if we don't go to the park at least twice a week.

Today, after two days of rain, I packed the kiddos up and we went to the park. Wes went straight for that bridge and started flapping his hands and kicking his feet. One little girl walked past him and stared at him. She almost had this look of dislike as she made sure he wouldn't touch her. Then another little girl came by. Probably the same age or younger. She stooped next to him and asked if he was alright. He reached out and touched her nose and giggled. I don't think he knew what to think. I, of course, broke down. I tried hard not to cry in front of all those perfect soccer moms chitchatting with the others and drinking their coffee. I felt like my boys and I were outsiders. We didn't belong because we were different. That just totally sucks! I have tried making conversations in the past, but I end up excusing myself so I can stop Wesley from throwing dirt, or pushing another child out of the way, or sitting in the way of all the other children. Then of course, he throws a temper tantrum and I end up dragging us out of the park.

So that's my love/hate relationship with the park. Sad isn't it?

The countdown

I have begun the countdown to Casey's surgery. We have just under 2 weeks to go. It sounds and feels weird, but I'm actually okay. I know that he is in good hands with his urologist, the hospital is one of the best and it's better to get this out of the way now then when he's older. Tim and I will be taking him while Wesley stays with my sister in law. She happens to be an OT and will be a huge benefit to Wes while we are gone. I know that she will do her best to keep him on his routine and not disrupt his world too much.

Casey's growing so fast before my eyes. It seems like years ago that I was bouncing on a yoga ball praying I would go into labor that night. He was so heavy and I was so uncomfortable. Not to mention it was 90 degrees with about 70% humidity for months. Now he's here and it's 9 months later. Nine Months! What happened? The saying "don't blink, or life will pass you by" hit the nail on the head. Sometimes, I regret being so wrapped up in Wesley. I feel that I've missed watching Casey grow. I didn't get the opportunity to nap with him in my bed. To take him to the park and let him enjoy the grass like Wesley did. It's hard taking them both out because I'm always chasing after Wes and poor Casey gets stuck in the carriage. He's almost ready to crawl. He gets his little bubble butt into the air and rocks back and forth on his hands and knees. It's really cute. I egg him on by putting his favorite toy just out of his reach. Hoping he'll move forward to get it. Almost! He has such a personality. Always smiling and looking for a laugh. He's not afraid to let me know he's mad either. The boy has a set of lungs like I've never heard.

Time surely flies by when you aren't looking. With the help of Tim's cousin this summer, I'll get the chance to experience the things with Casey that I've missed up until now.