Simply being a mom

So excited!

2009-02-04T10:12:00.002-05:00

We will be moving this spring!
My mother in law, who was selling her house, took it off the market. She wants us to rent it from her instead!
She called us a few days ago and told us we could start moving in our things right now if we wanted.
This weekend she's bringing over empty boxes. There's so much I want to get rid of before we move again. We have too much...stuff. I have baby clothes sitting in bins. Then there's the clothes my husband and I can not fit into anymore. I have 3 closets to go through and empty as much as possible. I can't decide if I want to have a garage sale or if I want to post everything on Freecycle .
Her house will be the biggest house I've ever lived in. When my husband and I married we rented a one bedroom house. It got a little cramped when Kaeden was born. We were supposed to move the spring following Kades birth but we were slammed with unexpected bills. So we stayed in the little house. Xavier was born that June and we went from being cramped to downright squished in the little house. This past spring we moved into our current apartment. We now have 3 bedrooms and 2 baths. Quite luxorious compared to the living conditions we had before. But it's still on the smallish side.
The new house we'll be moving into is also 3 bedrooms with 2 baths but it's much more spacious. The kitchen is huge. There's a deck in the backyard. I'm also happy about the silliest thing this house has...a room for the washer and dryer! Right now our w/d is in the kitchen. I hate that.

Now when I have birthday parties for the boys there's enough room for visitors. I won't feel as though everyone is sitting on top of each other. The house is all on one floor so Xavier will be able to run in and out of his bedroom without me worrying about stairs. The neighborhood is quiet and right next to a school. I'll be able to take the boys for walks again when the weather is warm. There's also a park nearby! I wish so much that we could move right now! I honestly hate living in a city.

The boys are doing great today. Yesterday Xavier was so ill. He was barely awake for 3 hours the entire day. Today he's running around and back to his old self.
Kade hasn't been as cranky. I think he senses my excitement. I told him we were moving back to our old small town. Its as though he knew what I was talking about because he started squealing with delight.
I think my family will be so much more happy. I had hoped that karma would come our way with some good fortune.

*does a happy dance*

Xavier is coming home today!

2009-01-31T12:24:00.002-05:00

My little guy has been with my parents since Tuesday. I miss him so much! Nothing here is the same without him. Well, except I have a much cleaner house.

Kade has certainly loved his one on one time with me. I held him yesterday and he grabbed my shirt just like he used to when he was a baby. We spent our evenings sitting on the couch chit chatting about life. He especially loved me asking him if I could buy a bottle of his "Kaeden Cuteness".

I know Kade won't be happy to see his brother returning. He was rather unhappy with my parents returning Xavier last time. I guess he thought once Xavier left that meant he would never come back again.

Now that we have our tax return money I can finally buy Kade some new educational stuff, like flash cards. I plan on taking one wall in the living room and turning it into learning center.
I have found all sorts of cool things I could pin on the wall.

I really enjoy the age my kids are right now. I can honestly say I'm not much of a newborn baby person. Yea, it's a supercute age, but it's not a really interactive stage of a childs life. If I could have it my way I would go from being about 7 months pregnant to having a 12 month old baby.
Call me crazy but I would be fine with that.

WTB: More patience

2009-01-26T17:04:00.004-05:00

My internet has been crazy for the past month. I apologize for not blogging as much but it's become almost impossible to stay on the 'net for more than 10 minutes at a time. I've contacted Comcast and our modem will be replaced soon.

Kaeden had a great speech therapy session today. There were a lot of vowel sounds. He was also responding to questions with "yea" and "no". The therapist brought along a remote controlled dog. She placed the dog on Kade's lap and he loved it! He would pet the dogs ear and even seemed visibly upset when she took the dog away once.
I wish we could afford to buy a real dog for him. But our rent would be $40 a month more, plus there would be vet bills.

Xavier has really been something else today. He was in timeout twice for not listening to me when I told him "no." He was acting out the most during Kade's therapy. I know he gets jealous of all the attention Kade gets during the hour. We've tried to include Xavier but it seems to fuel his desire to be the center of attention. It actually seems to make his behaviour worse instead of better.
I'm not entirely sure what I'm going to do about this problem.

I'm also frustrated by my boys hatred of clothes. They both try their hardest to ruin their outfits. Kade repeatedly pulled out his feeding tube to let formula drip on his shirt. When I asked if he wanted his shirt off he smiled. Then he shrieked with happiness once it was taken off. Xavier still moves his diaper so he can pee on his clothes. If I acutally redressed them each time their clothes were soiled I'm guessing I would have about 1 load of laundry, if not more, of just baby clothes!

Some days I'm not sure where I get all of my patience. Just when I feel like cracking I still find myself talking calmly to the kids.

2 down, 2 to go

2009-01-24T13:37:00.003-05:00

Thankfully, the testing for the school system went well. I was worried Kaeden would lose his patience after being poked and prodded for so long. I was pleasantly surprised to find that he was also scheduled to see the occupational therapist while we were there. That means he will only have two more evaluations to finish.

He didn't go to his speech and hearing test that was scheduled last Tuesday. About an hour before we would have left Kaeden developed a fever. I dressed him for bed while Chris called the school to reschedule.
Ever since then Kade has been battling whatever has made him ill. Some days he seems fine and then on other days he's back to vomiting. I suspect it may be a mild sinus infection. He's had some cold like symptoms that seem to drag on.
I will most likely take Kade to the doctor on Monday then. I'm curious to see how much he weights. I need him well by February, when we take him back for his check up at Riley hospital.

Going back to Kade's testing, I think I will call the school to make a complaint. We had to go to a building located in the downtown of our city. Later I found out this building is one of the oldest buildings in the city. As we approached it, I was looking around for the handicap entrance. Generally I find that the wheelchair ramps are either right besides the stairs or they are off on either side of a building. Neither my husband or I could find the ramps. Eventually we gave up. I carried Kade up the stairs and my husband hauled the chair up behind us. After the testing was done, one of the ladies showed us where the handicap entrance was located.
It was a loading dock! The kind trucks back down into. There was no obvious indication that there was wheelchair accessibility there.

Inside there is an elevator but it's the kind of elevator that makes me nervous. It's very old, small, and looks like the kind that frequently gets stuck between floors. It seems like the school has picked the most inappropriate place for special needs children.

Daycare tradegy

2009-01-20T16:27:00.003-05:00

The full article can be found here
Toddler Crawled to "Comfort Zone" to Die

Melissa Calunsinski, an employee of Minee-Subee Day Care Center in Lincolnshire, admitted to killing 16 month old Benjamin Kingan.
She slammed the little boy on the floor causing him to suffer a severe fracture to his head.
After the attack, he grabbed his blanket and pacifier and crawled to his favorite bouncy chair. He was unresponsive when help arrived. He later died at a hospital.

My heart goes out to the family of Benjamin. Although I do not personally know this family, I would like to offer them my sincerest condolences.

I would like to take this moment to light a candle for Benjamin.

I didn't have a chance to meet him but I will forever remember him.

Oh, the sickness

2009-01-20T09:26:00.002-05:00

Poor Kaeden has been ill for past few days.
It started on Sunday when I noticed Kade was fighting the urge to vomit. I had to take him off of his feeding pump early that day. Yesterday evening he was sick twice. Then this morning he emptied half of his tummy in his bed and the other half of his tummy in his seat downstairs.
The smell is so intense. There are about 3 loads of blankets that need to be washed.

He seems to be slowly improving. I gave him 8 ozs of water through his feeding pump. After his last bout of illness that left him hospitalized I now know how important it is to keep him hydrated.
He's watching Finding Nemo now. His favorite movie of all time.

I haven't decided whether he should still go for his hearing and speech test today. I wouldn't want to make him anymore sick by exposing him to cold tempratures. But yet the testing should only last 45 minutes and it needs to be done. I'll have to see how Kade is doing in the next hour or so and then I'll make the final call.

A touching moment

2009-01-18T23:06:00.005-05:00

Xavier and I have a game we like to play together. I'll sit on the floor and he hides behind the couch. I have to call for him but I have to use a silly voice when saying his name. I'll hear a burst of giggles from behind the couch. Then sometimes he makes me go through an act of fake crying about how I miss my baby, where is my baby.
When he decides the time is right he'll run out from behind the couch and sprint over to my lap. I have to make sure I have my arms wide open because if I don't he will actually take the time to stop, pull my arms out and apart, run back to his starting point, and then sprint to me again.
Earlier this evening we were playing this game. All was going well until he jumped up from my lap and slammed his head into my lower jaw. I could almost see the little birds floating around the top of my head. My husband, who was laying on the couch beside me, could hear my jaw pop on impact. Surprisingly, Xavier never cried. He stood up and inched away from me. The shock of pain wore off fairly quick so I signaled to Xavier that we could continue on with our game.
I opened my arms, he ran to me, but this time he tried to wrap his arms around me. He snuggled up on me as though he was trying to apologize for accidentally hurting me. I wrapped my arms around him and we sat like that for at least 5 minutes.
There was something so special about that moment of time.
My Xavier, he's a good boy.

Forever my Kaeden baby

2009-01-16T14:17:00.004-05:00

I am so proud of my Kaeden baby today. Yes, I called him a baby even though he will be 3 years old in March. He will forever be my Kaeden baby.

He did so great for physical therapy. He was able to lift his head and maintain excellent head control while resting his belly on a therapy ball. It's moments like those that bring tears to my eyes. He's trying so hard! No one will ever be able to say he doesn't give 110%.
He does have days when he does not cooperate for therapies but he is a 2 year old. I wouldn't expect a typical kid to always cooperate.

Today I caught Kade watching me a lot. You know that feeling you get when someone is staring at you? I would turn to look and his big blue eyes would be fixated on me. He would follow up with a huge grin. My heart melted each time. He can't say "I love you" but that look, that sweet innocent look, says it all for him.
I know this is going to sound odd but I couldn't imagine Kade being any way other than the way he is. I used to have dreams of him talking clearly or running while he played. Not anymore. I love him just the way he is. He is not physically perfect but his soul, his prescence, his everything else, is perfect. Why would I ever want anything less?

Xavier was in a good mood today. I think I only had to tell him "no" a few times rather than the usual 50 + times. He didn't like the heavy pj's I put on him today. He only seemed annoyed for a bit before running off to play with toys. Maybe even he realized how cold it was outside. The wind chill's dropped to -20. I had the heat inside cranked to high but it was still a bit chilly in here.
NOAA weather reported the cold temperatures to be lowest this area has experienced in decades!

I left my house for an hour to watch a belly dancing class. My husband said Xavier clung to him the whole time. It makes me so happy to know Xavier is getting to spend time with his daddy again. He's getting to the age where he wants/needs male influence. It's ok, I knew the day would come when Mommy wouldn't be all that she used to be. I still have Kaeden. I don't think he will ever outgrow his preference for me.

Xavier still has moments with me, although they happen less frequently as time goes on. If I lay on the floor that increases my chances of getting some snuggle time with him. He'll run up to me, a slobbery toy in one hand, then he'll kneel down to place his head on my chest for a brief moment. It seems only yesterday I was rocking him to sleep when he was a newborn. I do miss holding him like that.

If I had to give a titles to my boys Kade would be the Snuggler and Xavier would be the Protector. No one messes with his Mama or his brother. When my husband rough houses with me Xavier will step in between us and yell at my husband. If Kaeden cries and Xavier doesn't think I've noticed he will run to get me. Even if I did hear Kade I make sure I thank Xavier. He has a subtle sweetness about him.

It's almost bed time for me now. Good nite.

Leckey Equipment

2009-01-15T13:29:00.006-05:00

The occupational therapist and I spent our hour together fitting Kade into his new Leckey demo equipment.
The first piece we worked with was the Squiggles Saddle Seat. Kaeden really enjoys this seat! It's well padded for comfort, sturdy, and the height of the chair is adjustable. Unfortunately the chair does not include a headrest. I'm very lucky to know some great people at the local medical equipment dealer that were able to attach a headrest without altering or damaging the demo seat.
On the 23rd of this month, Kade's occupational and physical therapist are going to try to meet up to discuss any other pros and cons of the chair before I consider submitting an order of purchase.

The other Leckey demo item we put Kade in was the Horizontal Stander. Once again, another well padded, sturdy, and adjustable piece of equipment. I had really hoped Kade could use it. However, the openings where the legs are put in before the straps are applied are too big. In an upright position Kade is able to bend his legs and then he slides down the stander. It's not really the fault of the manufacturer. Kade has really thin legs. Hopefully we'll find another brand of a horizontal stander that will allow me to strap his knees more securely into place.

We do own a Lecky bath chair. It was given to us by another family. It's lightweight, easy to adjust, and has a great strap in system that gives support but also prevents body slippage.

In case you haven't noticed I am a huge fan of the Leckey line. I really believe they do their best to fit the diverse needs of disabled children.

It's not meant to be simple

2009-01-14T14:01:00.006-05:00

It seems Kaeden will still have go through with the schools evaluations. I called today and the lady informed me I could withdraw consent but that would mean Kade would have to attend a regular school, instead of one for special needs. I'm so frustrated.
He'll have to endure hour long evaluations for nothing but a label for the school to put on him. Then at the case meeting they'll tell me he's special needs, as though I haven't known that all along.
I could understand this process if Kaeden's disability was questionable. For some children, their disability requires testing because it would be the only way to know if a special needs school would be the best course of action for them.
It's heartbreaking but Kaeden's disability is very obvious. I wish more than anything that I didn't have to put him through this, yet again.
It seems so unfair and honestly, he's been through enough.

I don't think we'll be able to take him to his first round of testings tomorrow because the of the weather. The maintenance crew at our apartment complex hasn't bothered to clear the sidewalks yet. Also the windchills for tomorrow are forecasted to be as low as -20.

Xavier has been unusually calm this morning. He's been content playing with some toys and occasionally watching Oswald with Kaeden.
He brought me my wedding album earlier. It's as though he wanted me to show him the pictures inside. I sat down on the floor and showed him the 2005 version of Mommy and Daddy. I had forgotten that in the back of the photo album I had tucked away the ticket stubs from my first date with my husband.

Exactly one year later from the date on the tickets, we brought Kaeden home from the NICU.

Xavier wasn't interested in my first date with Daddy story. Instead he ran off to play with his kitchen.

It's time to stop reminiscing though. There's a ton of paperwork I have to fill out for the school. Wish me luck as I work my way through the pile!

Silence is golden

2009-01-13T19:07:00.004-05:00

I love sitting here at my computer desk and hearing almost nothing. The sound of the keyboard tapping as I type is oddly soothing.
After a long day of children crying, whining, and screaming, just about any other sound is soothing.

My kids have really kept me on my toes lately.
Kade has decided that he hates his wheelchair. I've tried to make him as comfortable as possible but it's obviously not working. Today I even let him sit his bath chair. He really enjoyed it but his little butt kept sliding down the chair, regardless of how tight I made his lap restraint. I didn't want to make the strap too tight because he has an abnormally high pain tolerance. He would never be able to let me know it was too tight.
I did feel a tinge of relief when his physical therapist told me she learned at a recent conference that spastic children are the most difficult to fit into special needs equipment. Now I know Kade probably isn't the only child having a hard time. I can only hope Kade will adjust better to his chair as he grows older.

Xavier, oh my goodness, Xavier.
He can almost bring me to tears sometimes. I've been working so hard on teaching Xavier how to say what he wants. The constant whining instead of being verbal is so nerve wracking to me. I have so much more patience for Kade's inablility to speak because it's part of his disability.
Xavier really doesn't have a reason for his silence.
I have caught him talking in a whisper. I encourage him to talk louder but he's unwilling. Honestly, the rest of Xaviers behavior doesn't bother me. He's a typical 1 1/2 year old. He's going to get into things, he's going to push the displinary boundaires with me. He's supposed to.
But the whining. I wish he would cry instead. I would even take a tantrum over the whining.
Most nights I have so much guilt over the relief I feel when Xavier goes to bed. Maybe I'm not trying hard enough, maybe I need to learn his signals better...but I could "maybe" myself til the cows come home.
Sometimes kids are difficult. It's that plain and simple.

The sooner any parent learns that, the better off they'll be.

I need to call the school system tomorrow. My husband and I have decided against all the evaluations the school wants to do on Kade. If I remember correctly, he doesn't need to be tested in order to attend school.
Each evaluation takes an hour and aside from the psychological portion, Kade has done the others many times before. It will only cause him distress and for what? So the school can say they have done it? He has almost 3 years worth of papers that will show the State has already done the same.
There is nothing left to prove. Kaeden can do what he can do and for now that's not going to change. At some point it's time to say enough is enough.

Hopefully the kids will be in a better mood tomorrow. *crosses fingers*.