Sunday, August 26, 2007

A Real Hero

Well isn't it great when you learn something new? I spent all night teaching myself a new feature I found bundled with my Windows Vista Media Center. Literally...I never went to bed. I guess it is time to "reset" my internal clock. I hope you enjoy the video. Here it is...

Do You Like My New Page Layout?

Today, I decided to update the look of my blog. I like the new look better. It makes it easier for me to look at the page and see his slide show and ticker. Today begins the countdown to Tommy's first birthday. In less than a month, my little fighter is going to be a year old! It does not feel like a year. It feels like weeks ago he was born. Maybe it's because wee one still sleeps beside me in a bassinet. I know he isn't going to be in there much longer. He is starting to get too long. I don't want him sleeping with his legs curled up after all of the physical therapy we have done to stretch him out! Speaking of PT, he's been doing remarkable in that area! Look what we have accomplished this week.

Here he is sitting up for a few seconds on his own. Not long, but he did hold his balance for the first time!

This is him playing on his tummy for the first time! He even lifted his head a few times!

The tummy is a really big deal. When we started therapy six months ago, he would hyperventilate the second we tried to roll him over. It has been a lot of hard work for all of us, especially him. I hope by his first birthday, he will be able to lift his head and play on his tummy, and be able to sit on his own. He will probably get a crib for his birthday. I've never made a big deal out of any of my other boys birthdays, but after all we have been through with Tommy, I wouldn't feel right without some sort of celebration. I've got a few more days to plan it!

Wednesday, August 22, 2007


Tommy went to the endocrinologist today. Just another "ist" to add to my already long, long list. My sleep schedule is completely screwed up. I end up being up til 5 in the morning, and sleeping until 11ish. Matthew and Brandon stay up so late and no matter of approach will sway them to lay their heads down and sleep! I have always been a night owl, but when Brandon can survive on 4 hours of sleep a day and go like a freight train morning and night, I am having a hard time keeping up with him! I need a week of sleep! I have been given a respite opportunity...I can choose whatever it is I would like to pamper myself. Tough call. I just don't know!!! I thought about checking into a nice hotel for a weekend and ordering room service and going on a garden tour. Problem is, I have to train Rob how to care for Tommy, and it's just not working out. The point is to get away from Tommy for a little while, but if I have nobody is this whole world that knows how to care for him but me, then how can I ever get away. Maybe my respite should be to send Matthew and Brandon away for the weekend instead!

Friday, August 17, 2007

Time For A Change

Today was a day for me. Well, I should say yesterday, since it is almost 3 in the morning...anyway...I took myself to the doctor. Not Tommy. Me. I have been worried since Tommy was born that my gestational diabetes was not under control. At my 6 week checkup after he was born I was told it was a little high and to see my regular doctor. I didn't have a regular doctor, and my insurance ran out very soon after that appointment.

I ended up finding a free clinic last week and made an appointment. I was not far off track in needing myself checked out. My fasting blood sugar was 131. Not terribly high, but enough that the doctor started me on some oral medication and is having me monitor myself for a month. I will then go back and see if there is any change.

Now, Today today, (because it is almost 3 a.m.) well, that is another story. It's my birthday. I am 36 years old today. So I guess my birthday gift to myself was to get on track to getting healthy. I am going to celebrate by putting a roast in the crock pot when I finally get up so there will be no cooking on my part for my birthday dinner. I am going to watch High School Musical Part 2 and just relax. I am hoping hubby can take the older boys to a friends and all of them spend the weekend. I could really use the peace and quiet. Of course, Tommy would still be here, but he alone isn't really that much work. It's when you add all of his work in with cleaning house, cooking, taking care of the other boys, blah, blah, blah that is gets tough!

So. Happy Birthday to ME!

Thursday, August 9, 2007

Decorations By A 4 Year Old!

Silly Brandon! I walked into his room today, and look what I found! They have bunk beds and Brandon has the bottom. I guess he needed decorations!

Wednesday, August 8, 2007


Wowee! I think I am going to like the upcoming school year! Last year, during the second semester, we tried on homeschooling. I gave it a ton of thought and talked to Rob about how he felt. We have decided to go for it, and this year, not only are we homeschooling Matthew, but Brandon as well! If we were sending them to traditional school, Brandon would be in a Head start or Child Development type class, so why not!

I have been in touch with a lady here in town that also homeschools. We happened to be chit chatting on the internet and talking about Brandon. She offered me a book...well, that book turned into 3 boxes of books for both kids! I have posters, flash cards, books, you name it! I only lack getting chalk and some wipe-off markers and we are ready to rock and roll!

Since they didn't have much of a summer with Tommy having surgery, and all of that yucky stuff, I decided not to start them until Sept 4th. The regular school district starts here Aug 21, so it isn't too far behind the regular year. I am really excited to get on a good schedule and watch them thrive and learn each day. Here's the latest of the troops!

Saturday, August 4, 2007

Sleep Deprivation And The Trach Baby...

I am blogging at 4:19 a.m. I am dead tired, and cannot fall asleep. For the past week, every time I have dozed off, Tommy has awakened. As if on cue, his little feet flew into the air as I began to write this blog. You see, Tommy does not meet the criteria for Medicaid to provide him a nurse. They have a waiver program, but that is only for mentally retarded children, or children on a ventilator. Since he can breathe on his own, he doesn't qualify. The fact he is BREATHING THROUGH HIS NECK does not count for anything. Neither does the fact he is on oxygen. Or fed through his stomach. Or has unrepaired heart defects. Or can't swallow. Developmental delays don't count. He is 10 months old and has the physical movement of a 5 month old!

Nope. No nurse. Just me. I cannot work, even if I wanted to. Good thing I wanted to be a stay at home mommy. That is about the only good thing about the situation right now. As his Mommy/Nurse I care for him 24/7. You would think I would care for all of my children 24/7, as you would yours. No, no...I mean physically doing something pertaining to his medical needs 24/7. Loading and prepping his feeding pump, administering medications, physical therapy, caring for his trach and gtube sites, and suction, suction, suction, suction, suction! The more it rains, the more gunk he gets in his trach! Oh, I forgot to mention that these are in addition to bathing, dressing, diaper changes, kiss the ow-ee, playtime, get up, and put to bed stuff of a typical baby too!

I am soooo frustrated. I KNOW if I close my eyes and start to drift off, he is going to start coughing and gurgling his trach. I guess I am just going to have to risk it. I am so sleep deprived, I can't even find an analogy for how tired I am! Wish me luck and at least a partial dream before he needs me again.

Oh, as a postscript, I just want to add how much I love Tommy. I would do anything for him. I just cannot be a good mommy to him and to the other boys if I am too tired to function. I just need a little help and the system is messing me over.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries