MomOfThomas

It's me again...

2009-11-10T18:47:00.000-08:00

As always life is busy. But life is good.

Thomas is flourishing in kindergarten. He has an awesome teacher. They have loaned him a communication device called a "Dynavox". It is fairly easy to operate once it is programmed and he is a rockstar when he uses it. It has made life around here a lot easier and less frustrating for all of us.

Jacob is growing fast and doing things ahead of schedule. It's a relief to have him reach milestones early, but bittersweet because I see in him all the things Thomas could have been. Everyone knows I love Thomas as he is, but Jacob is the spitting image of his big brother and to see him doing things already that Thomas still cannot do (sitting on his bottom on the floor) is bittersweet. It's like seeing the baby Thomas *should* have been. That seems so horrible to me to say that, but it's true. That is what I dreamed of for Thomas.

Meanwhile Thomas has taken well to being a big brother. He loves Jacob and is so sweet with him. Jacob adores Thomas and loves any bit of attention Thomas will bestow upon him. Those are the moments that make it worth getting out of bed in the morning.

Bad Neglectful Blogger

2009-10-23T18:46:00.000-07:00

Life with a newborn and a special needs child is a challenge. But now that the baby is almost 6 months can I still call him a newborn? Sorry to whoever still reads along for the lack in posting. Life just gets away from me (if you could see my house right now you'd understand what I'm saying and know that it's true!).

I, once again, will promise to try to get back to blogging as regularly as I can manage. I am now working part time but it feels like full time after all is said and done. Thomas is in school full days five days a week! Jacob is growing like a weed and I can tell already that I will be in for it with him in ways I never experienced with Thomas. I'm excited about that, and to be truthful I'm also a little scared!

For now here is a little peek at my gorgeous boys. These pictures were taken about two weeks ago (by me! I'm a wannabe photographer).

Pictures!

2009-05-22T04:50:00.001-07:00

My Handsome First Son What's in here?

T and his silly self trying on his safety glasses:

Jacob, the little sweetheart!

Sleeping, it's what he does all day.

Brothers

The past 5 months in a nutshell...

2009-05-22T04:37:00.000-07:00

Well what's been going on in the past five months? LOTS!

1. Thomas turned SIX and had a fabulous birthday party with a bunch of our family friends. He got way too many presents and our house is overrun with all of his toys. Books were (and are) still his favorite items to receive, but he also really liked the "power tools" he got from Grandma Sue.

2. On Thomas' birthday I went to the doctor and was put on bedrest. Turns out my cervix was "funneling" and so I was ordered off my feet as much as possible. I was allowed to continue working, which helped to make the days more bearable.

3. Thomas now knows the entire alphabet. He can identify every letter upon request in any order. He is using his PECS (picture cards) to let us know what he wants (such as orange juice or chocolate milk) and can use them to make complete sentences (such as "I want to go outside please").

4. Thomas now can do the sign for YES. He does it in his own way, which is close to the correct way. He's been doing it for months but I only learned yesterday that he meant YES when he does it. Even so it has made life a lot easier in just the few hours I've known what it means. He picked out where we should go to lunch yesterday using yes and no, and when I asked if he loved me he said yes!

5. Toward the end of my pregnancy (the last three weeks) I was put on complete bed rest. That meant no more going to work, no lifting, no anything. It sucked! I spent a week in the hospital trying to stop labor, and it worked. I managed to keep the baby baking until 35 weeks and 6 days.

6. Jacob Gary was born on April 30, 2009 at 4:49 a.m. He was 6 lbs 0 oz and 19.5 inches. I had another quick labor. My water broke at 2:30 a.m. and contractions started immediately after (every 2 minutes). Jacob came out at the hospital, delivered by my own doctor, after just three pushes. He is now three weeks and 1 day old and doing great. He came home with a bit of jaundice one day after I was released. He had a billi-blanket for just one day and is doing great. Thomas loves him, and has pleasantly surprised us with how little jealousy he shows and how much he seems to like Jacob.

And that's all the major things. During my stint on bedrest Thomas and daddy did lots of bonding and now have a really close relationship. Thomas also became more social due to all the visitors we had here helping out, especially my sister and my mom who spent the most time here helping.

I'll attach some pictures in a seperate post.

Lost Password Recovered

2009-05-22T04:35:00.001-07:00

Hi all! I have to apologize for the huge amount of time that has passed since my last blog entry! I had forgotten my password and in the craziness that is life just had no time to spend worrying about it. But I've got it now and plan to try to post regularly once again.

Thanks for your patience. :o)

Speech & Other Updates

2008-12-30T02:39:00.000-08:00

Thomas had his last speech appointment yesterday. It was kind of sad but in a way I'm glad to have one less appointment each week. But I was able to show his therapist something cool he picked up over Christmas. His teacher sent home a bunch of sheets with pictures on them. The first row contains "I want" and two other things like that. Then there are three rows of activities and the bottom row says "please" "all done" and something else. I think it was on Christmas Eve that Thomas and I were hanging out waiting for others to wake up and I showed him "I want" "to read a book" "please" and he picked it up right away, all day he would pick up his sheet and point out "I want" "to read a book" "please". Between myself, Aunt Erin, and Grandma Mary we must've read at least 20 books a day. So anyway, yesterday at therapy I took that sheet and asked Thomas what he wanted to do, and of course he wouldn't do it. lol Well his therapist uses a laminated piece of posterboard with velcro on it and the same type of images cut out with velcro on the back for him to choose which activities he wants to do next. It so happened that there were three activities on the board that matched the sheet we brought with us. His first pick was "cards". Well she was supposed to be doing his end of therapy evaluation to show the insurance company how far he's come, so she wasn't really going to do the activities on the board (he got ticked when she didn't have it set up so she set it up just to appease him, Thomas apparently likes having a routine). Well he picked cards and she didn't do cards, so he grabbed his sheet and pointed out "I want" "cards" "please". LOL If he could've talked I can only imagine what he would've been saying "lady, I picked cards so lets do the darn cards!". LOL So she did work on some cards with him after he asked so nicely. After the evaluation he also chose book, which he then pointed out on his sheet ("I want" "to read a book" "please") and then a game ("I want" "game" "please").

It was pretty awesome. I need to decide what other card combinations I'd like made up and see if his teacher will do them up for him to use at home. I'd like to come up with a system using poster board or something to have all the words and commands with all the options and choices he could want permanently placed somewhere in the house. We could do food items using magnets placed on the fridge. I'll have to give it some more thought.
It may not be actual speech, but it's finally an effective way to communicate without the whining and frustration of not knowing exactly what he wants.

Since it has been a while since I've done a Thomas update I can also share that he has mastered the art of shaking his head "no". (Something I've been working with him for literally years) Now that he can do that and knows what it means he is constantly answering questions with an enthusiastic shake of his head. If only he'd get "yes" down too we'd be all set. Right now he is the king of NO. lol

For Christmas we got Thomas a "George" in the box (like a jack in the box, but with Curious George instead of Jack). It took him about ten minutes to master the art of turning the crank. That's a huge thing, at first he couldn't do it at all, now he's a pro, and it requires he use his right hand, which he rarely does, so it's a double bonus as far as fine motor therapy goes.

That's about it for Thomas updates this time around. He is doing so well and learning so much. It's still so exciting every time he learns something new and to see the excitement and pride on his face as he realizes just what he has learned.

If you made it this far thanks for reading and thanks for sharing in my excitement over Thomas' accomplishments.

The boys got skills...

2008-12-09T04:34:00.000-08:00

There's not a whole lot to complain about here in Thomas' world. He is doing great in school, and while he never wants to actually get dressed to go, once he's on his way he's happy as a clam. I'm still bribing him each morning with new books (thank goodness for Goodwill!), but hey, we do what we gotta do. Speech therapy is going well, and while he's not talking, his communication skills have improved so much that life around here has gotten a lot easier.

The other day I was sitting near Thomas and asking where certain body parts were, and he correctly pointed to my toes, feet, knees, tummy, hair, head, and when I asked where my mouth was he leaned in and gave me a kiss. I counted that as correct. ;o) He gets confused on eyes and nose however, so we're working on that.

On the baby front, after another couple ultrasounds I am pleased to announce that there is one healthy dancing baby in there. I was sad that the second baby pulled a vanishing act, but one will be easier on everyone, including Thomas. I know he'll have a hard time dealing with having to share the attention, the toys, and *gasp* his books! But we'll get through it. When I ask him where the baby is he will point to my belly, which is so so cute. If I'm too far away when I ask, he'll point to his own belly. LOL I'm getting ready to start weekly progesterone shots to help reduce the risk of another preterm delivery. I'm hoping to find out the gender at one of my weekly ultrasounds that are about to start soon too. Then I can start the serious shopping!

That's about it. We're getting ready for Christmas and I must say I am not prepared at all. I still have gifts to buy and nothing has been wrapped. We took a gift to Thomas' speech therapist yesterday and he got mad that he couldn't open. (really what would he have done with a Yankee Candle anyway?) So I think after I do get the gifts wrapped I won't be able to put them under the tree, because Thomas will open them all the first chance he gets. The tree has been up since the day after Thanksgiving, and he is finally leaving it alone - two broken and one missing ornament later! Don't even get me started trying to count the number of candy canes he has snuck off the tree!

Thomas' daddy and I both turned 30 in November. I don't know if it's the pregnancy or the number but I'm definately feeling OLD lately. I'm guessing it's a combination of both.

Proposition Two

2008-11-12T05:12:00.000-08:00

The people of Michigan have spoken. Majority rules and so, it is with great relief and pleasure that I can say Proposition Two has passed!

For those not living in Michigan, Proposition Two made it legal to use embryonic stem cells for research. There are strict regulations on this research, such as the embryo must be one which the people who "own" it have decide not to use it and it will otherwise be discarded. Also, it must be less than a certain number of days old before being frozen. Also the "owners" will have to sign a consent form for researchers to use their embryo's.

I realize this is a controversial issue. Pro-life people think it is as bad as abortion. I am not going to get into that. What I am going to get into is the potential this research has in curing disease's that as of now are incurable. Stem cells have the potential to treat and cure Multiple Sclerosis, Parkinson's Disease, Diabetes, Heart problems, CEREBRAL PALSY, and the list goes on and on.

My husband and I are actually going to bank the cord blood stem cells from our new baby and have them injected into Thomas. I have heard stories of children like Thomas, who could not walk or talk, receiving stem cell injections and actually growing brain tissue. The result: they can now walk and talk. Such a simple thing to do, a painless procedure, that can mean so much to a little boy who doesn't yet know that he is different, and a family who knows how hard life is going to be for him.

So thank you to all in Michigan who voted yes. Controversy aside, this research could save and improve millions of lives. Including that of my little boy.

A lot of NEWS!

2008-11-12T04:41:00.000-08:00

I have woefully been neglecting my blog. I admit it. However there has been a lot going on around here to keep me busy.

Thomas has completed 8 weeks of pt/ot and is working through his second 12 week session of speech therapy! After all these years of fighting with insurance companies we finally have one that was willing to give speech a chance. They approved 12 visits, and his progress was so good they approved an additional 12. Now, he's still not speaking, not even a single word, but he is comprehending, understanding, following directions, pointing, and making his wants and needs known. It is a huge accomplishment and I am so proud of him!!

We also just received a new set of AFO's, nighttime splints, and a pair of Hatchback shoes for my growing boy. The splints were covered 100% between our two insurances, the Hatchbacks were out of pocket. $65 well spent I would have to say. If you haven't heard of Hatchbacks, they are a pretty neat shoe that actually can be semi-bent to fold open at the sole so they are easier to put on. They are a little wider than regular shoes as well to fit over afo's.

On the momofthomas front, I started a new job. It is a wonderful position in which I help mentally and physically handicapped people to be able to use their computer for fun, work, school, etc. I go to their homes, install hardware and software which makes it easier for them to use their computers. I also teach them different software programs to help with everyday skills they need to get through the day (reading, math, etc). It is a very rewarding job, and the pay is great, but the best part is I can make my own schedule. I work only while Thomas is in school and am home to get him off the bus. I love it! That is the main reason my time here has been limited and some online friends are feeling neglected.

And possibly the biggest news of all: We are expecting a sibling (or maybe two!) for Thomas! Soon I will be momofthomas&____________! I am almost 12 weeks along, my due date is May 30, 2009. At my early ultrasound (I had spotting so they did an ultrasound) they discovered TWO fetal poles! The doctor says there is a chance one of the twins will be what is known as a "vanishing twin". However, at not quite 12 weeks I have already outgrown my regular jeans, even though I have lost 2 pounds. Either it's twins in there, or Godzilla. LOL

I'll post more about my pregnancy later. The doc thinks I have what is known as either a uterine septate or a bicornuate uterus. I have an appointment with a specialist next Thursday to find out more. I'll try my hardest to get back here and update y'all on my progress.

Wiggling through the years...

2008-09-06T04:24:00.000-07:00

Thomas discovered the Wiggles when he was two years old. We were visiting someone who happened to have The Wiggles playing on her tv. After that he just couldn't get enough of the fab four from down under. They have done so much to help his development and it doesn't hurt that they are fun to watch. Thomas first learned to clap by watching and imitating them as they sang "Everybody Clap". We had been working on clapping for over a year in physical therapy, and it only took the Wiggles a few weeks to get him doing it.

Now that Thomas can point, he can correctly identify each Wiggle by name and by color, as well as Wags, Dorothy, Henry, and Captain Feathersword. He loves when I help him follow along with the dance moves, and when I need a smile for a portrait I can almost guarantee one by doing a Wiggly dance.

I took Thomas to his first Wiggles concert in 2005. I learned that the Wiggles host Meet & Greets for special needs children before each show, and was lucky enough to get one for Thomas. Thomas was not in a good mood when we arrived at the venue. He was in an even worse mood as we stood in line waiting to meet the Wiggles. At that point he didn't understand where he was or what was going on. He was screaming and crying and just an overall mess. We were at the end of the line so he couldn't see the Wiggles until the very last minute.

We finally got our turn and I said to the guys "I'm so sorry, he is not in a good mood today" and of course the Wiggles were great about it. They all spoke at once to tell us it was okay. As soon as they spoke Thomas turned his head from my shoulder and stopped crying mid-scream. He was in total and complete awe. He couldn't stop staring at them long enough to even look at the camera. It was such a great moment, and one of those forever memories you know will always be cherished. Thomas was so happy that day, the entire concert was spent with a constant smile stretched across his face.

We went to a second concert that year, but didn't request a meet & greet. Thomas still had the best time.

We have since been to 3 more concerts, one per year. By the third year Thomas was so familiar with the venue that he automatically knows what we are doing when we get there. He gets so happy and wiggly in his stroller. Each year I have applied, and been approved for, a meet & greet with the Wiggles. Sometimes I feel bad about being a meet & greet hog, but when I see the joy on Thomas' face, it doesn't matter. I will do anything to put that smile on his face and that memory in his heart. As long as he loves the Wiggles, we will go to their concerts and if possible meet them before the show.

First Concert and meet & greet in 2005.
Also in the picture are my aunt and cousin.

Third Concert - 2006
with our friend "Wiggly" Jo, who makes all our concert attire.

Fourth Concert - 2007

Fifth Concert - 2008

Back to School

2008-09-06T05:17:00.000-07:00

It's back to school time. Thomas was taken by surprise and was not happy about this change to his daily routine, which consisted of waking up when he wanted and relaxing in bed until he felt like getting out of it. It was a shock on the first morning when I had to wake him and instead of lounging in his pj's he had to get dressed and head out the door.

He broke my heart with his tears, which lasted until he saw the bus. Thankfully he loves school busses and was almost excited to see it. Once he and his stroller were on the lift heading up to the bus, he had stopped crying. When I got to the school with his personal supplies he'd need he had already arrived. His teacher said he wasn't neccesarily happy to be there, but he wasn't crying either.

Day two went a little better. I was better prepared for this morning, with a brand new book he could take with him on the bus. He cried when I got him dressed, cried when I rolled him outside, but slowly became all smiles when I pulled out that book.

When he got home I had to put him right in the car and take him to a pt/ot evaluation, but before we got there I took him to Goodwill and we bought probably 25 new-to-us books to help make the next month or two of mornings go as smoothly as day two.

Summer Vacation

2008-08-04T20:31:00.001-07:00

I must say, I am enjoying my summer "vactation". Although it was kind of forced upon me with the absence of our babysitter, I have embraced the time off and been pretty productive with my time.

Thomas is enjoying have his mom home every day. Sometimes he will even work with me on learning to identify shapes. Mostly we just hang out. He loves to come back to my home office and play around while I work on web sites. Occasionally he crawls on my lap and types emails to his grandmas. I'm not sure which language he is using, but they seem to be able to interpret them pretty easily.

Meanwhile I am quite busy with my web design business. I was hired to do another site that could lead to many more, I completed a site I had in progress, and did updates to another. Now I am just waiting on my clients to send me my money. My business is in the black which is great! I won't be able to support my family with it anytime soon but it's a good start. Now that I'm home I have more time to learn some new programs that will eventually make my job easier.

So all in all losing our sitter turned out not to be so bad. I've even managed to squirrel away some money into our savings account! Go figure! I manage to save more money when I'm not working than I did when I was.

It might not be so bad...

2008-08-04T20:26:00.001-07:00

Saturday Thomas goes for another round of botox injections. Do you know what that means? it means I managed to win against an insurance company for a change! He gets to go to the same botox doctor that he has been going to for almost two years now.

YAY!

Turns out that the insurance company is letting us go to him under the "continuity of care" clause. However I found out they actually don't have a pediatric physiatrist signed up with them, so they really had no choice. Now they are trying to recruit our guy to be one of their members. Whatever the reason, we'll take it. Such a weight has been lifted off my shoulders with this decision.

Thanks for all the prayers and positive thoughts you all have sent out for us over this situation. They are much appreciated.

By the way...

2008-07-25T19:47:00.000-07:00

If you've read my post "Anyone know a good babysitter" then you'll understand why I am posting this link:

http://www.littleladydesign.com

It is for my web site design company that I recently started up. Granted I don't know everything there is to know about web site design, but so far all of my clients have been happy with the job I've done. If there's something I don't know how to do I research it and learn how to do it. My prices are reasonable and generally cheaper than pretty much anyone else out there.

So, this is my shameless self-promotion. If you know anyone wanting a web site of their very own, send them my way!

Anyone know a good babysitter?

2008-07-25T19:21:00.000-07:00

Well, it seems I am on vacation for the rest of the summer. My babysitter, who was on unemployment after being laid off from her full-time job, got called back to work. She got the call yesterday that she was needed today, Friday. I too was needed at work today. Unfortunately I don't have anyone else nearby who can watch my little rugrat.

For five years I have been a stay at home mom. Mostly by choice. Before Thomas was born my hubby and I decided I would take a year off to be home with our son. When Thomas came out 8 weeks early and ended up having problems, we knew we had made the right decision. 18 months, and hundreds of appointments later, I was still a stay at home mom, only now I was the stay at home mom of a special needs child. I couldn't go back to work. For one, Thomas sometimes had appointments five days a week for months at a time. Occasionally those appointments would slow down to just one or two a week, and rarely we'd have a week with no appointments. Who wants to hire a person who needs to leave early every day or who needs every day off? No one, that's who.

Finally, five years into life with Thomas and I think I am ready to rejoin the work force. I find a job that is just a temporary position, which is a great way to test the waters and see if this will work. It's got to work. Ater five years on a single income things are getting tight. Luckily my immediate supervisor is great at being flexible with my schedule and the job works out. Even more lucky is that I found a sitter who would come to my home and watch Thomas for very little money. Before that job ended I was looking for another job. This was working out okay, right? Why not shoot for a permanent position?

I found another job working for an insurance company for which I had previously designed a web site. The owner knew about Thomas and our special circumstances and promised flexibility with my schedule. Boy, if only she had known what type of flexibility I was going to need! Less than a month later I was giving her a zero day notice. "Sorry boss, I can't come in tomorrow, or Monday, or any day actually, until after Labor Day. Sorry."

Am I the world's suckiest employee or what?

Fortunately for me, my boss is pretty awesome. She didn't bat an eye and told me my job will be waiting for me, whether I can find a sitter again for the summer, or if I have to wait until school begins in the fall. If I were her I would have told me to hit the road and not look back. I think, in part, she feels for me because of Thomas and his special needs, and because she has a son with a different set of special needs.

So now I am wondering how on earth are we parents of special needs kids supposed to make it in today's world? A boss like mine is a rare find. There are few jobs that are willing to be so flexible. Besides that, I am once again without an income. It is now the burden on my hubby's shoulders to carry this family all on his own. We just can't do it. For five years he has been carrying us as slowly our saving's has dwindled to scary little numbers, and just when I think we are finally going to be okay, life happens.

I applied for social security for Thomas. I was denied because as a family of three we have an income greater than $1300 a month. Yes people $1300 a month for a family of three, and that is pre-tax income. That is what the government thinks a family of three can survive on. I can't possibly see how a family of three can survive on that income, especially a family of three in which one is disabled which means only one of us can work. I contacted a lawyer, surely that is just a ploy by the government to try to get out of paying. Nope, the lawyer said them's the rules so tough luck sweetheart.

Am I wrong to think something is not right with that picture? I guess I should be thankful we don't meet the income requirements to qualify, instead of whining about not qualififying. But the way things are going, we'll qualify before too long. Thanks Uncle Sam.

On a completely unrelated subject, did you know the President makes $400,000 a year? I'm sure he gets free healthcare in there too, as well as his own limo, airplane, house and all the other extras at no additional cost to him. Granted, the President's job is hard, and important. But ya know what? So is mine.

I Hate Insurance Companies

2008-07-17T18:25:00.000-07:00

I.

Hate.

Insurance.

Companies.

There, I said it. Now tell me any of you out there disagree with that comment, I would find it hard to believe. Recently my husband's employer decided to switch insurance companies. This meant I had to find a new pediatrician for Thomas and had to wait and worry if all of his specialists would be covered. Luckily they almost all are. All but one to be exact.

Unfortunately that one is the one I most wanted to keep. He is Thomas' physiatrist, in charge of managing his cerebral palsy. He is the second one we have gone to see and the only one we ever want to see again. This guy can deliver a dozen injections of botox in Thomas' legs without Thomas even shedding a single tear! He agrees with me, so far, on everything. We have the same views on treatment and on how I should let Thomas live his life.

I cannot give him up. I won't. I'll take out a loan, remortgage my house if I have to. In a world of so-so doctors who may or may not actually know what they are doing, this one is genuinely knowledgeable and up-to-date on all the latest treatment options. He travels across the globe to gain this knowledge. And now my insurance company won't cover him.

I. Hate. Insurance. Companies.

There is hope. I can possibly keep him under a "continuity of care" clause in which the insurance company will allow Thomas to continue seeing this doctor based on their history together. I'm nervous because it has been only 13 months since we found him, I don't know if that is long enough. Another loophole could be if there are no other physiatrists near enough who will accept pediatric cases. If I remember correctly there aren't any others around, except our old one who, when giving Thomas his botox injections upon which Thomas would cry his little heart out, would say "stop being a baby!" Ummm, hello?!? HE IS A BABY!

So, those of you who pray, those of you who meditate, those of you who sacrifice chickens or other livestock, please do what you must so we can keep our beloved Dr. Dabrowski!

:o(

2008-07-13T09:25:00.000-07:00

Short bus jokes aren't so funny when someone you love rides one.

Smarty Pants

2008-06-25T18:29:00.000-07:00

I have always known Thomas was smarter than anyone gave him credit for, but his recent accomplishments have surprised even me. Mr. Man has discovered the joy of pointing. He gets that little finger out and just starts pointing away. He loves to point to objects, colors, characters, etc. and have whoever is nearby tell him what they are. Now comes the smarty pants part. Thanks to his newly found skill, Thomas is able to demonstrate just how smart he is. If I ask him "where's red?" he will find something red in his book or on his sheet of colors and point to it. He can do this for red, blue, black, yellow, green, pink, brown, gray, orange, and purple. He can correctly identify about a dozen different animals. He knows all his Disney characters, and of course all the Wiggles and their Wiggly Friends.

Is this kid a genius or what? ;o)

Seriously, I did not know just how smart he was. I'm in shock and awe of his brain power. I have always known he had it in him and have also known he just needed a way to get it out. Now that he's found that way I am over the moon, and so is he! He is so proud to point and show everyone everything he knows.

The smile that lights his face could light the world.

Common Bond

2008-06-01T14:16:00.001-07:00

Finally I have discovered something my husband and my son both enjoy and can do together. Up until now they have had no common interests. Thomas enjoys Clifford, Curious George, the Wiggles, and picking his nose. Daddy enjoys none of these things, although he may pick his nose in private, I don't know...

So Saturday night we decided to give the local race track a chance to receive some of our hard earned money. The cost wasn't high and Thomas got in free, so if he didn't like it we didn't have to regret spending the money to get him in.

When we first arrived Thomas was in good spirits. He didn't know what was going on, but with a belly full of McDonald's french fries and sprite, he was ready to party. Upon walking in he spotted one of his new favorite things (as long as he isn't on it) - a bright yellow school bus. The bus was offering free rides around the track and into the pits for anyone interested. Thomas was content, more like downright giddy, just to watch the bus circle the track. When it was time for the race I got a little anxious. Would they cars be too loud? Would he get bored? Would we end up having to leave before the first race even ended?

Turns out I needn't have worried. Thomas was in complete euphoria, sitting there watching the races. The louder the cars the more excited he became, bouncing on first my knee and then his dad's. Wriggling, squirming, kicking his legs, he had to be passed back and forth between his daddy and mommy so they could each have a chance to relax before trying to keep that crazy happy boy from bouncing right off our laps.

It was truly a perfect moment. There aren't many things my boys can do together that they both enjoy. It's hard to find an activity that Thomas can participate in with at least a basic understanding of what is happening. It was thrilling to watch him as he watched the cars circle the track. My heart was full to bursting as I watched father and son sitting together, eyes following the cars around the track, both with huge smiles on thier faces.

And even though I am not a big race fan, I can't wait for the next one!

Those things he does...

2008-05-18T10:20:00.001-07:00

As I sit here, purposely ignoring my child, he is doing something amazing.

He is feeding himself. Yogurt. With a spoon.

Yup, he is feeding himself yogurt, with a spoon no less. If you don't think that is amazing then you are among those without a special needs child of your own, especially one with physical disabilities. This is truly amazing. He has done it before, but never for as long as he is now and not usually with such little assistance (interference?) from me. Yes, I am helping. I put the spoon in the cup and get the yogurt on it. He takes it out, makes it to his mouth without dumping it on the table or himself, sucks that spoon dry, then gently sets the spoon on top of the yogurt cup.

This is actually quite huge.

Less than a month ago he had an appointment at the brain function assessment clinic. The doctor tried to get him to do all sorts of things. He was shockingly cooperative and surprised me many times with things he was able to do. But one thing he wasn't yet doing was feeding himself. Whether this is because he just couldn't, wouldn't, or because he knew mom would, I don't know. But it is just something he wasn't doing.

However, as I sit here, he is doing it. I know I said that already but I am excited and can't stop saying it!

And while I'm on the subject of that brain function assessment (to which I have yet to receive the results) I have to say that this kid really did well. There were some things he couldn't do (or wouldn't). But I had to laugh when, upon being handed a small plastic bottle which held inside a small little sugar pill, and then being asked to remove the pill, Thomas tried and tried to get that pill out with his little fingers. When that didn't work he put the bottle into his mouth and tipped his head back, getting the pill out just as he was asked. That counts right? In fact I think that was the smartest way of doing it really, I wouldn't have though of doing it that way.

Other things he did were unscrewing a lid off a bottle, matching one image to it's duplicate which was included in a group of other images, removing his socks, and pointing. These are all things he doesn't usually do, not that I've witnessed anyway.

And while I'm on this hodge podge of a blog entry I must add that Thusday we got a note home from the teacher stating that Thomas was able to take a picture of a classmate and then identify which classmate it was by immediately seeking that classmate out with his eyes. She said he did it for each of his 8 classmates and it was obvious he knew who was who. Again, HUGE!

I am so proud of my little man. Proud actually seems like an inadequate word to describe how I feel about him. He amazes me daily and I am so lucky and so blessed to be his mom.

New Friends

2008-05-18T10:06:00.000-07:00

We went to a party at our friend's new house yesterday. Some of the wife's relatives that we haven't met showed up and I gotta say I LOVED their little girls. The littlest one thought Thomas was just the greatest thing and everywhere he would crawl she would get down on all fours and follow, then try to do everything he did. It was adorable. She was smitten. Then the older girl (4) had brought a bunch of books with her. well Thomas loves books so he was drawn to her. At first she hurried up and put them all away and hid them. Later in the house she asked me to read one to her so I was, then Thomas came up wanting to look at her books (they were Clifford, one of his new favorites after Curious George) so she shared with him. She'd allow him one at a time, and he figured out right away that he had to give the last one back before he could get another one. It was cute.

Most kids will try to engage Thomas at first, but will soon realize he can't play with them in the usual ways (or won't, whatever) and they will give up. The fact that these girls adapted their play to fit him just warmed my heart. it is honsetly hard to find kids like that. and honestly Thomas usually just ignores other kids anyway. but there was another little boy there who we see occasionally who had a ball and whenever it would go by Thomas, he (thomas) would try to get it to throw to the boy. well this boy wanted nothing to do with that, he'd run over and snatch the ball back. That is the behaviour I am used to. It breaks my heart when kids act like that. I know they are just little and most haven't been taught any better, but it still hurts. Luckily Thomas is a happy-go-lucky kid and it didn't bother him that the boy did that. But someday it will, and that is a day I dread. how am I supposed to explain that to him?

*sigh*

To the clinic we go...

2008-05-16T05:12:00.000-07:00

We are off yet again to the burn clinic. I cancelled last week's appointment and rescheduled for today. Unfortunately I did so while on my way to work and can't remember the exact time of the appointment. I'm sure they'll see us whenever we show up. I think it was around 10 or 10:30.

This will probably be the last visit. Thomas' foot has healed so nicely, it still has a ways to go but I think we are out of the scary part of worrying about infection and onto the part where it is more nuisance than anything else. Right now it looks like a big bruise. I find this odd, but have no experience with second degree burns and their healing process. I hope this is a normal stage as the blood begins working it's way through the new skin growth. We shall see.

Still Thomas acts like the burn never happened. He tolerates the twice a day bandage changes and doesn't even flinch when I have to wipe at the wound to get all the "gunk" (that's the technical term) off of it.

He's so strong.

I will take a picture of the burn at the clinic and post it in all it's ugly bruised-ness (That is too a word, at least in the momofthomas dictionary) and post it later.

Working Mom

2008-05-15T14:06:00.000-07:00

I had to think about my title. Working Mom. Aren't we all working mom's? I mean, being a mom is a job in and of itself dontcha think?

Regardless, I am now a "working mom." I took on a temporary job that is set to last 8 weeks. I have just completed my second week. It's been nice getting out of the house after 5 years of definining myself only as "Mom of Thomas." Having an income is nice too.

The first week was hard. The work was hard. Being on my feet all day was hard. Being away from Thomas was hard. But hardest of all was when I got home and Thomas wanted nothing to do with me. Hard was watching my baby boy look at me with tears in his accusing eyes. I can only wonder what he was thinking. I tried to prepare him for this, but really how do you prepare a child for something like this when explanations cannot be comprehended? At first I thought taking the job was a mistake. How could I do this to my poor sweet boy, how can I leave him in the care of someone I've only met twice? How can I entrust his care to someone else when I am the one who knows what each sound he makes means, I am the one who knows what he wants, I am the one he looks forward to seeing as he gets off the bus?

I went in on my second day because I had made a commitment and I needed to honor that commitment. But I wondered the entire day how Thomas would look at me when I got home. Tuesday he was being watched by a good friend who he was already familiar with. Would that make a difference? I walked in the door wondering what type of reception I would receive. Once again he didn't really want anything to do with me. His indifference to me tore at my heart. I told my husband I didn't know if I could continue with this job if it meant hurting Thomas like this, hurting me like this. I was granted some cuddles at bedtime, but then he began to cry as he was drifting off to sleep.

I have made a horrible mistake taking this job. I will have to quit. It's not worth it in my eyes, commitment or not I have to quit.

I decide to finish out the week and see what happens. We have agreed to work ten hour days so that our week is just four days instead of five. Wednesday I come home and am greeted with a smile. It seems Thomas might be getting used to this new setup. He is still not coming to me voluntarily, but will come when I ask him for a hug or a kiss. Progress.

Thursday is much the same as Wednesday.

Friday is my day off and Thomas and I get to spend the whole day together. Just me and Thomas. We go to the grocery store and McDonald's, then come home and watch the game show network. He cuddles with me, kisses me, crawls up to me and wants to be held. My heart no longer hurts. I think to myself "we can do this, this will work."

So now it is the end of another week of being a working mom. Thomas has adjusted so well. He is beginning to trust his Monday/Wednesday babysitter and has grown to adore his Tuesday/Thursday babysitter. My days are shorter because my team now knows what we are doing and can get things done faster. I get to come home earlier to my sweet boy and am greeted each day with smiles, hugs and kisses.

This job has taught me a lot about what it takes to be a working mom. To go to a job outside of the home all day and work until I am bone tired. Then to come home and take care of a child and a house. I have also learned that a full-time day job is not something I can do on a regular basis. I have managed to arrange all of Thomas' upcoming appointments for Fridays or Saturdays, but that isn't always possible. I will have to miss his end-of-year field trip. I may have to miss his end of year preschool olympics.

I am lucky to have a husband who is being very helpful with the housework. I am also lucky to have a husband who is able to support our family without needing additional income from me in order to survive. So while I am enjoying being a working mom, I am looking forward to returning to my stay at home mom status.

Botox

2008-04-26T12:04:00.000-07:00

My strong boy never ceases to amaze me.

Today Thomas had a botox injection appointment. He received six injections in each leg. I laid him across my lap on his belly to get the injections. It was over within thirty seconds from when it began. He never cried, never whined, squirmed a little, but was otherwise such a big strong boy. When it was over I sat him up on my lap and he looked at the doctor, clapped, and when the doctor clapped back he gave him a big ol' grin.

He really is an amazing little boy.

Burn

2008-04-26T11:42:00.000-07:00

The time had to eventually come when Thomas would get his first real big bad injury. Of course it also had to be a time when it was due to something as stupid as mom not putting shoes on him and dad letting him sit alone on the four-wheeler.

Usually when I take Thomas outside I don't bother with shoes. He can't walk so what's the point? We went outside and daddy decided to take Thomas around the yard a few times on the four-wheeler. As he always does, he tucked Thomas' feet under his (daddy's) legs so they wouldn't come close to the hot motor. They started their drive and did a lap or two before running out of gas. Daddy got off waiting for mom to make her way over and let Thomas stay sitting on the quad. Then I came and took Thomas while daddy pushed the quad back to the garage. Thomas and I played outside a bit longer, riding in the wagon and sitting on the lawn mower (even though it wasn't on Thomas thought he was so cool sitting on it playing with the steering wheel). After twenty minutes or so I brought him in for his bath and bedtime.

As I was undressing him I noticed he had something on his toe and reached down to yank it off. Before doing so I took a closer look and realized it was his skin! He had two medium sized burns on the top of his foot near his big toe. He hadn't cried out while on the four wheeler, nor acted in pain at any other time we were outside.

I ran a cool bath for him and put him in. I cleaned him up and allowed the burn to soak in the cool water. I got him out and put some aloe gel on the burn, lightly wrapped it in gauze, put a sock over it and he promptly fell asleep. Of course I debated whether I should take him to the ER or not, but since he acted like it didn't hurt and it looked bad but not horrible I decided to leave it be for the night.

The next morning I unwrapped the gauze and put more aloe and fresh gauze on the wound. We went on some errands and then came home. All the while he acted as though he hadn't a care in the world. When I removed the gauze that afternoon it stuck to the wound and I noticed some discoloration on the gauze. I decided to go to my "in-home medical professional" aka GOOGLE. When I read some of the results about burn care and burn severity I decided it would be best for Thomas to be seen by a doctor. I called his pediatricians office and was told to take him to the ER near them which included a burn unit.

We spent over four hours at the ER. Which is crazy since it was only serving children and it was busy but not crazy busy. By the end of the visit Thomas was diagnosed with a second degree burn but what they did and told me to do was the same as what I had been doing. They gave me a medicated ointment to use and sent us home with an appointment set up for the next day at the burn clinic. Of course I was given major guilt trips about Thomas being on the quad without shoes. It really didn't matter, I couldn't have possibly felt worse than I already did, regardless of what they had to say to me.

The next day we went to the burn clinic and again the doctor tried the guilt trip on me for no shoes/quad. Okay, I get it, world's worst mother here, I know. I felt like asking the doc if he had kids, and if so had they never in their lives suffered a preventable injury while under his supervision. But I bit my tongue.

The doc said that while the burn was bad, and would require five or six weeks to fully heal, that it was small enough not to require any type of graft or other major procedure. I was told to put the cream on it and change the bandages twice a day, put him in the tub as usual and wash the wound while trying to slough off the dead skin.

So, basically to do what I had been doing.

I beat myself up over not taking him in the same night it happened. I surrounded myself in guilt over not putting shoes on him, not reminding his dad to watch his feet on the four-wheeler, and for not noticing the burn right away. But I have decided to forgive myself, relieve myself of the guilt, and realize I am human and things like this will happen. I will never again allow him to ride the quad without shoes or jeans, but I won't stop him from riding. He's going to get hurt and I won't always be able to prevent it. Life happens and while I will be more careful, I will also be careful not to smother him so that he cannot explore and enjoy life and what it has to offer.