Thursday, April 28, 2011

Our new addition

Meet our newest addition to the Wilson household! His name is Zander Cage and I guess we'll keep it even though Cade and Gracie can't remember it! Anna thinks it is original and cool, not plain and boring like her name! She says Gracie would pick out a boring name. Just because she named her goldfish Goldie and Sunshine. Those were the final changed so often that she had to make a list and keep it beside the aquarium! I'm not even kidding!!! So Zander it is!

Ever since Gracie found our outside dog dead, she's been talking non-stop about getting another dog. We've never had a house dog but since the outside dogs are getting attacked and killed a house dog it'd have to be. When you take into account that I'm allergic to most all animals plus Asa's sensory issues and my desire to not have to clean up a ton of hair or poop, our choices were going to be limited! I've been doing my research and hit on a couple of breeds that fit our family. They are also pricey!!! This week I took Gracie by a local puppy breeder and let her look around. I was surpised when she went for the 2 yorkies running around. I thought she'd want a fuzz ball like a poodle or Biscon breed. Nope, she was stuck to the yorkies. These 2 were not for sale, one was the owners dog and the other was just bording. In fact there were no yorkie pups at all right now. Oh, and the owner mentioned that her yorkies run $500! HA, not happening here!!! I started searching some rescues because I also decided that the chewing and house breaking of a puppy was not something I really wanted to do!

Still unsure which breed would be good for us I started asking at the pet store when we bought fish. I asked a few vets. And when we picked our cat up from the vet (after his snippy appointment!) I asked them. Turns out one of the tech's mom had a yorkie she needed to get rid of. She had a mother yorkie and had kept a puppy but then started working 2 jobs and out of town so she really didn't have the time and attention for the puppy she'd kept. She only wanted $50 to pay for the vaccines! It was more than that to adopt from the shelters. He has papers too....whatever that means for us since we aren't breeders. So without telling the kids, I went back to the vet today to meet the little guy.

He is a year old, housebroken, quiet, friendly but not jumpy.....and ours! When all the other dogs in their kennels were barking and whimpering, Zander wasn't making a sound. When I held him he snuggled in for a cuddle. His only drawback, I was told, was that he didn't like a collar! He chewed them all off! I bought him a harness and he has been fine. I also bought a kennel since I found ours broken as we got ready to take the cat in.

I picked Anna up from school first and she was so surprised and excited! Asa was next but he was clueless. He noticed but was just his usual screaming, ill self on the way home. We waited for Gracie and Cade to get off the bus to surprise them. Zander was under the car and peeked out at them. By this time Asa had gotten sick and was screaming, the loud bus pulled up and our outside dog was very curious! Poor little guy was a bit overwhelmed! We got him inside and he has made himself right at home!!! I predict he will be spoiled rotten by night fall!

Asa just liked the new kennel! The boy loves boxes and he had a blast with this until he dropped the lid and startled himself!

This is what the final stage of a startle episode looks like for Asa! Passed out and draining! Right after he dropped the lid, Zander came over to see what the screaming was about and Asa was in no mood! He has since made friends and with help even rubbed the dog! I think both would just soon avoid the other. Asa is too loud for the dog and the dog is too soft and fuzzy for Asa.

So tonight I hope we all rest well!! So far everyone seems to get along fine! Let's hope it lasts!!

On a side note, when we told Cade we were taking Toby the cat in to be fixed, he was irrate!! He tried to hide the cat in the clothes dryer, in his room, in my closet and called me a "animal hater"! By the time we left the house he was near tears. No matter how much we told him we were helping Toby, he was just mad! I took him inside the vet so he could see it was a fine place with good people. I'm not sure why it affected him so much unless it was a male bonding thing. When we got Toby home and Barry saw that they actually remove the boy bits he was upset too!! What's with these guys?!

Wednesday, April 27, 2011

Milestone Celebration!

Asa has been making some great inchstones and milestones lately and I need to be sure they are all down and recognized!

A few weeks back Asa started sitting up in bed by himself. I was so excited to go into his room and see him sitting up in bed! Then he started sitting up and OUT of bed by himself! The first time he was in his room playing. The second time I was getting my camera ready so I could record myself going in there with him out of bed and before I got to him, he came scooting out of his room! Then this morning I slept in and as I got up I heard him in the hallway at the bottom of the stairs. He was sitting but was stomping his feet on the floor. Gracie and Cade were upstairs watching TV so I assumed they got him up. When I asked though they said no, they didn't get him. That means that he got up and out of bed, out of his room and to the bottom of the stairs where the only noise was coming from! Smart kid! He just better not be planning any middle of the night roamings!

He has also gotten really good at the wheelchair. And very brave! After church Sunday we were finishing up the nursery and missed him. He was rolling down the hallway and into the foyer! Did you remember it was Easter Sunday and the place was packed!! Apparently the crowds parted for a 3 year old in a wheelchair and he headed outside! I found him happily rolling down the drive thru driveway....backwards! Don't panic there was a trusty adult there to stop him from crashing into the parked cars!! Seriously, he was having a great time! He'd push up the little hill and then let go of the wheels so he'd roll backwards!!!

He also rocked at the Easter Egg hunt on Saturday. While the big kids were busy he used the wheelchair to push a little ping pong ball around on the gym floor! I see wheelchair Olympics in his future! Do they have a wheelchair X-games?!

And his tolerance for crazy, loud, busy environments is amazing to me! The egg hunt was busy and loud and he did great. He spent a lot of time in his chair rolling around with everyone. Then he spotted me and was clingy while I needed to be busy! I ended up putting him in a little chair along the wall and he just sat and watched all the action! The best tolerance was last Thursday at Gracie and Cade's ball games. Gracie played at 5:45 and Cade at 7:30. We have to be there by 5:15 and Cade's game went until 9:30! Asa did amazing!!! He staying in the jogging stroller for a long time. Then he walked with my mom. Then back into the stroller for a while. He scooted along the bottom of the bleachers for a while and was happy to sit and rub the concrete! And he ate! Boy did he eat!!! He had some Cheerios bummed from another little boy, a sucker, some hamburger bun, some of a fry, Pedisure and 3 cups of Gracie's Gatorade!!! I just knew he was gonna be sick but he wasn't at all!

His eating has not been so great lately. He is willing to do the Pedisure but he isn't very adventurous with other oral things. And we've been having to drain a lot too. I need to start tracking this!

Thanks for celebrating with us!!!

Thursday, April 21, 2011

Happy Birthday Gracie!!

I've got several blog posts in my head and one is even typed and ready to share but a more important event needs to come today! Today was Gracie's 8th birthday! I got to take birthday cookies to school and hang out while the kids did their Easter Egg hunt. Seeing Gracie in her school environment was really fun.

Gracie is one of the most unique girls that I know. She has always done things her own way. She has no fear of bugs or blood or guts. She doesn't scare away from any of the grossness of Asa at all. She even attempted to change a terribly stinky diaper all on her a matter of fact she did change it by herself, there was just poop smeared everywhere!

She is also a huge tomboy. From an very early age she just kinda fell in line with Cade and assumed the role as his equal! When she was 4 I even caught her trying to stick through the deck rails to tinkle while in her swim trunks. She didn't understand why her pee went down her leg instead of the streaming off the deck onto the plants below! She still loves her swim trunks but now she does wear a swim top at least!

For as tough as she is, she is also terribly tender hearted. She loves animals. All animals! Just a few weeks ago we were leaving our house to ride out a tornado warning in my parent's basement. She broke down because we couldn't carry her fish with us! This whole thing with her dog getting killed is terrible for her too. In case you aren't my FB friend (and why aren't you?!) then you don't know that last weekend Gracie found our dog killed by dogs who are unleashed and have pack like behavior. Apparently the attack happened on Thursday afternoon or Friday and Gracie found him on Saturday afternoon. It wasn't a pretty sight! She has had trouble sleeping and keeps talking about it. She also thought her teacher was gonna get her a puppy for her birthday today! Getting another dog is not an option right now because the other dogs are STILL not being leashed! Anyway, my Gracie is an animal lover!

She is also so funny! She says what's on her mind, even when she'd be better off keeping her opinion to herself! She is so blunt and honest and innocent that I can't help but laugh even though she is telling me how old and fat I'm getting! She told me on Monday that she wanted me to make the same softball cookies I made for her last year. They are scratch cookies so there is mixing, rolling, chilling, cutting, cooking, cooling, frosting, packing, etc. I couldn't get the icing the color I wanted and Gracie just sighed and said "it doesn't really match but it's ok, just do the best you can"! She doesn't understand sarcasm though! Too bad that is like my second language!

And she doesn't lack self confidence! She will readily tell you that she is the best reader in class, the "hottest" girl in the school, the best ball player on her team and just generally the best of all things in the world! And she isn't just blowing hot air. She believes it! She lives it!!! While Cade was playing ball tonight she was playing "wall ball" with a group of boys, some older and some her age. Then they got out on an empty field and she pitched and fielded for them. Then she took her turn hitting! I'm amazed at her ability to hang with a group of boys but not just to hang with them but also have the upper hand! She was the only girl!

I've enjoyed watching her grow this year.....physically, emotionally, intellectually and spiritually. She started off this school year with no desire to read and was not that great of a reader. She has improved so much and even likes to read for fun now! Of course she has grown taller and stronger too.

By far the hugest milestone of her past year was that she gave her life to Christ! She is a Christian and I couldn't be more proud! What a blessing and I can't wait to see her grow and learn and I wonder how God will use her!

It has been a wonder 8 years with my sweet Grace Eden Marie Wilson! I'm so blessed to be able to call her mine while we are here on Earth together! And yes she has 4 names! Would you expect anything else from someone who named thier kid Asa! We selected Gracie because we truly feel like God's grace has given us much more than we can ever deserve or even imagine. And Eden came in when our pastor was teaching about the perfect Garden of Eden. It seemed fitting since baby #3 would be our last and complete our family....or so we planned! Anna insisted that Gracie had to have Marie in her name since Anna does too. So she does!

Happy Birthday my Gracie!

Wednesday, April 20, 2011

I Am the Disabled Child

I am the child who cannot talk.

You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's stardards...great strides in development that you can credit yourself. I do not give you understanding as you know it.
What I give you is so much more valuable...I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.

I am the child who cannot talk.

I am the child who cannot walk.

The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the top shelf. I need to go to the bathroom... oh...I've dropped my spoon again. I am dependent on you in these ways.
My gift to you is to make you aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness.

I am the child who cannot walk.

I am the child who is mentally impaired.

I don't learn easily, if you judge me by the world's measuring stick. What I do know is infinite joy in the simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity.

I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I give to you my innocent trust, my dependency upon you.
I teach you of respect for others and their uniqueness.
I teach you about the sanctity of life.
I teach you about how very precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.

Most of all, I teach you hope and faith.

I Am The Disabled Child.

~~Author: Unknown~~

Monday, April 18, 2011

I HATE mito....

This seemed to be the theme of my Facebook today. Various mito friends were going through different struggles and trials. I was having my own "I hate mito" moment this morning.

I've gotten pretty used to Asa's issues. Some are constant, some come and go and some just pop up from nowhere. And then there are a ton of issues that we have never had to deal with, for which I'm grateful! But this morning had me shaking my head in disbelief at how something so normal and random could affect my little guy so much. What would normally be no big deal is turned into a big deal by mito!

And so, I HATE mito because.....

Asa went to bed last night around 9pm. I heard him waking up and playing around 8:30 this morning. He never cried for me but I got him up around 9am. He was sitting up on the edge of his bed (love this milestone!). I gave him his Prevacid, cleaned him up and sat him in the recliner. I got his cup of Pedisure, which he gulped down by 9:30am! I offered an applesauce or a yogurt but he refused. He sat and played with his laptop while I did laundry and cleaned out a closet. Around 10:30 he started screaming in pain. I looked in here and he was red faced, doubled over trying to poop! I picked him up and comforted him but he was in pain, pushing and gagging from all the work to poop. He finally settled and I changed him. I changed a whole little half dollar size ball of poop! All that effort for nothing! I laid him back in the floor and went back to the closet. He never settled and started struggling again. This time while I was rocking and comforting him, he dozed off. Before he got all the way to sleep, I change him again....barely anything again. As I was changing him he dozed off. Once he was changed I laid down in his bed with him. He was gagging and coughing but was asleep in just a minute. He ended up sleeping from 11am-1:30pm. Just making 2 tiny poops was enough to completely deplete him and he slept for 2 1/2 hours!

I know there are a million other reasons to hate mito....and I hate mito for all those who struggle in so many ways. But this was just a big reminder that mito sucks in so many ways.

Asa made up for his lazy, sleepy morning this afternoon though. After we picked Anna up from school he played and played outside. He sat on the edge of the pool and kicked his feet in the water. I pushed him on the swing set. He bounced on the trampoline. He sure didn't want to come inside!! I can't say that I did either!

Friday, April 15, 2011

A busy week!

We have had a busy week and several ups and downs. On Monday Asa woke up early with a fever, snotty nose and mucusy cough. I took his temp under his arm and it was 99. He felt much warmer so I did it rectally and it was 102. I tried a forehead reading and got a totally different reading! I've noticed this when Asa is having heat issues but I need to have an accurate reading when he is sick! 

I watched him closely Monday. He had fever again at 2 pm but his nose had dried up. He was super clingy and took 2 naps. He was a good eater though! By evening though it became clear that his belly wasn't emptying fast enough and he was full and sick. By evening I was pretty sure I'd be going to the peds on Tuesday.  I was thinking he could have strep or ear infections or sinus yuck or my fav, something viral. 

But when Asa woke up on Tuesday his fever was gone! In fact his rectal temp was 97.4! He was still tired so I didn't send him to school. He felt well enough to tear up a roll of toilet paper, empty the silverware from the dishwasher and pull the pots and pans from the cabinets! He ate the Pedisure well too but again, by evening it was clear that his tummy wasn't functioning well. Yuck!! 

By Wednesday we were back on schedule! Asa did go to school but he had a rougher day. They had to drain him at school too. 

On Thursday I did some work outside early in the morning. Asa played on the sidewalk and tried to scoot into the dewy grass. I put him back onto the walkway twice but the third time he scooted through the overgrown flower bed and into the taller, wet weeds. When I tried to get him up he pushed my hands away! Silly, adventurous boy!  

He has still been having dry sneezes, coughs, red eyes and he often grabs his nose and face like it itches. Dr. Pacheco, the immunologist and allergist we saw in Houston, still hadn't sent me the blood tests results. I called last week. She gave him a script for Zyrtec but I didn't want start it until I had the bloodwork. So I called again today.

Shockingly all the environmental stuff came back normal! He isn't allergic to the trees they tested, grasses, dust mites, cats, dogs, etc. I think we live in the allergy belt of the US and Asa isn't allergic to any of them! Yay!! He is however allergic to milk and pecans. And peanuts and soybeans had a slight elevations. Now Pedisure is milk based so this is odd and confusing. Dr. P had said that if something came back high yet he eats it without trouble then we keep letting him have it. I'm not sure if the itchy eyes and nose, eczema or puking are related but this is interesting! I can't wait for Dr. P to get back in next week so she can walk me through this. 

There was also something about his immunity but I still need clarification on this too! See the first part of this post and then tell me that he has trouble with immunity! I'm sure Dr. P can help me understand this. She is so amazing! Very easy to understand! 

Oh and on the school front, when I picked Asa up Thursday and he was wheeling down the sidewalk, instead of turning towards the van he continued going straight and pushed to the door of the next classroom! The door was propped opened so he opened it on up and got the attention of several kids and the teacher. I was so surprised that when they came over Asa didn't shrink away but instead reached out to play with a little boy and his toy!! And today as I chatted with the teachers he rolled away and was exploring in the toy cabinet! I love to see him playing!! 

Thursday, April 7, 2011

What a cute monster!

We've created a monster! 

I took asa to school today. I got out his wheelchair.  I put him in it and unlocked the brakes. He wouldn't go in! I finally tried to push him in and he grabbed the wheels and wouldn't let me push him in! His speech therapist was coming in so she tried to get him to follow her. NOPE! 
He did take her hands and put them on the seat belt so she'd unbuckle him! She did and he walked with her hands to the grass but he was not going in! I finally just picked him up and carried him in and then go the wheelchair in! 

Who's idea was it to give him independence?! I love it!

I also think he is getting the hang of sitting up on his own. For Monday's nap he sat up twice by himself. Then last night at bedtime he did it two times again.  When I went in to get him this morning he was sitting up near the edge of the bed fussing at me!! 

I think the wheelchair may  help him walk. You'd think that by getting a chair we'd be giving up on walking but really it is doing the opposite. Pushing is building his upper body strength and coordination. Having the ability to easily explore is giving him some independence and adventure. When he walks now, he is using me less and less. And that's a win-win for sure!

On the pudding front..... Asa pooped about 7 times the next day! So no more chocolate pudding for a while! Or at least not 2 cups! You know I've got to give it to him again to see if he can handle it! 

Wednesday, April 6, 2011

Too much!

Sometimes too much of a good thing is a bad, a BAD thing!

Asa really only eats his 3 cups of Pedisure a day. We are on a roll if he will eat some real food at supper or snacks during the day. Some days he won't have anything other that the Pedisure and some days he'll have lots of food and we take away a Pedisure. Yesterday he was an eating machine!

He had a Gogurt tube for breakfast with 1/2 cup of Pedisure. Before we left for school he also had 1/2 of an applesauce cup with some Nutella mixed in and a cup of Pedisure on the way to school. This alone was a great feeding day! I'm thrilled to get in applesauce OR yogurt.

Now fast forward to 2:30pm and school pick up time! I walk in to him in the wheel chair with a huge bib on, surrounded by dirty towels and sick and gaggy. Turns out he wanted a chocolate pudding cup while at school. Then he signed "more" so he had another pudding cup. Then he tried a raspberry icee thingy. He was filled to the gills and overflowing! Oooooppps! See, I didn't tell the teachers how much he'd eaten at home and he kept signing "more" so they gave him more, who wouldn't! Bless their hearts!

We got to the car and all that chocolate started coming up before I could get the drain bag hooked up. He was so exhausted and pale and nearly lethargic on the way home. I began to wonder if he had a bug because he looked so sick. After we got home and he napped some more, he perked up and was good to go by this evening. He had a cup of Pedisure at 5pm and again before bed. I was hesitant about that bedtime cup and stood firmly on a NO when he signed "more" after it!! Learned that lesson all ready today!

Bless his teachers hearts though! I would have done the same thing. It is hard when a kid who won't eat really wants to eat "more"!! I've overfed him here too. And they didn't know what he'd had before school. I also think he was tired and maybe getting too warm. It was the perfect storm really! His teacher called to check on him tonight. I think she felt bad that he got sick and I felt bad for them that he puked and got so sick for THEM! I told her he does that nearly everyday and I hated that they had to deal with it. Last night I also wondered if it was the chocolate from the pudding. We've had a few issues with chocolate and I will pick vanilla over chocolate for him. His teacher said she thought they had vanilla. I suggested they repeat the feeding but with vanilla and see if he gets sick! Hahaha, she said NO THANK YOU!

I really love Asa's class and his teachers! We had a chat yesterday about next year. I agree that he doesn't really fit in this class anymore. I feel so blessed that he had this adjustment time though. It is a small class so they can do more. And Asa has made huge, huge strides since October! They say that everyone has fallen in love with him! I love to hear that! And Friday, they took a walk in the hallway with his wheelchair and he rolled down the hallway waving at everybody. These good reports make my heart happy!

Oh and when Cade and Gracie came home from school, I had Asa asleep on me in the recliner and he was hooked up to drain. Cade came in and said, "What is that?", pointing to the chocolate filled bag. I told them it was pudding. Gracie said, "How'd he get pudding in there?"!!! See, we just aren't used to him eating! :)