Wednesday, May 30, 2007

Pass it on...

I found this on youtube. I don't know the author, but it hits home! I want to pass it around the world until EVERYONE knows about CHD's!

Here is a direct link

Sunday, May 27, 2007

Home Sweet Home

Home Sweet Home...We arrived in KY yesterday. My husband and I were both born and raised here. Me in Elizabethtown and him in Bardstown. So far we have seen one of my sisters, her husband and their two kids, and from Robs side, we saw a few cousins, and his aunt. Today is his family's reunion. I am excited to go. I have never been (mostly because we live out of state). I don't know what all we have planned for the week. Family court, the zoo, a get together with my family this Friday...this is vacation, so I want to just veg and let it happen.

Tommy barely slept on the way, and refused to wear his HME (it goes over his trach and keeps him from getting too dry). Now all of the kids are sacked out on one bed, Rob in the other, and me on the computer! They are gonna hate me when I have to wake them up.

I really miss not living here. I have such mixed feelings. If we move back, Tommy's health would definitely make a turn for the worse. The hospitals here are nowhere near as competent as MUSC. So for now, we will visit when we can, and maybe in a few years, when he overcomes more of his little quirks, we can think about moving back. Of course, it is summer now. We might feel differently once the snow starts to fall! After living in Charleston for 6 snowless years, I don't know if I would be able to tolerate the shoveling, the black ice, and all the lovely stuff to go with it!

I will update on our trip when I can!

Tuesday, May 22, 2007

Big Bad Swallowing Baby!

Short and sweet: the swallow study proved that Tommy CAN swallow!

"Cricopharyngeal dysfunction is defined as the delayed or incomplete relaxation of the cricopharyngeal muscle during swallowing. This may cause dysphagia and aspiration, affecting the quality of life."

That is a quote from a medical journal. He's defied the odds to do what you and I can do naturally. He has to work a little harder at it, but in the end, the food goes down pretty easily once he figured out what was expected of him. I feel like standing on top of MUSC and blowing great big raspberries at all of the writers of these medical journals. Time and time again, Tommy has turned the medical world on its ear. He grows, he thrives, he laughs! Of all of his accomplishments and milestones, his smile is my favorite. Second is swallowing!

I don't know if he will ever get "nutrition" from swallowing, but he will get enjoyment! That tough little cookie deserves to enjoy something in this life. He goes through boring and sometimes painful therapies all week long. He has had procedures and surgeries. I can't wait to hear what his speech therapist lays out for us this week! He deserves some happy, enjoyable times in his little life!

Monday, May 21, 2007

"Where's My Chicken????"

Some things are meant to NEVER be said, but as parents, we say things we had never planned on vocalizing, ever! for instance, tonight I find myself in the kitchen yelling "Where is my chicken??" Yes, my chicken. See, Brandon has a bad little habit of taking random things that don't belong to him and hiding them in his room. It can be one of Tommy's sensory toys, a shoe, one of Rob's tools, and sometimes food. Today, it was a whole chicken! I had taken it out of the freezer, placed it on the kitchen table and then took Tommy to my room to get him ready for bed and settled for the night. The whole process takes about 30-45 minutes. When I get back to the kitchen, the chicken is missing...hence, my yelling. Brandon comes into the living room and gives me a sideways smile. With a stern look, I ask him what he did with my chicken. He said, "In my room..." Sure enough, there's the chicken on the top bunk in his room. I am still trying to figure out how he got it up there. He barely ways 35 pounds!

Since we are going to KY next weekend, I am hoping he gets a weeks worth of spoiling from everyone. We will be getting back on his birthday. I am trying to convince him to have a Hotwheels cake. Or anything other than HIS idea! He wants a potty cake. Yep, he wants a little toilet on his cake. He might just have to have a regular cake, with whatever I want on the top, and then I will make him a little cake of his own and find a dollhouse potty for him. I am hoping with the positive attention he will be getting, he will settle down with the taking things. I really think he is doing it because Tommy gets so much attention with the therapists coming by twice a week, then since I have to suction Tommy so frequently, it looks like I am spending time with Tommy more than Brandon.

I hate it that Brandon feels like he has to take things to get noticed. He will be 4 on June 4th, so I am hoping he is going to grow out of all of this very soon.

Thursday, May 17, 2007

We've been having a great week. Rob is getting a ton of overtime, Tommy is doing fantastic. We had Tommy's cardiac appointment today. Dr. McQuinn only wanted his oxygen saturation levels. Last month, they were in the low 70's and he was coughing. Today he was back up to 84%. We also go his heart cath scheduled. It is going to be on June 25th. Tomorrow we have PT. Tommy had his G tube replaced today (routine) so I am excited to see if he will do some tummy time. I'm not expecting anything, but it would be nice to see if this helps him.

We are passively working on Brandon's potty training. We let him go if he asks to go, but we don't make him unless he wants to take a bath. Matthew is having withdrawals from his gameboy. I have to keep it put away and let him take it out for special occasions. I have to hide it,haha. We ended up installing a camera in their room. Too many fights and they are blaming each other. Plus Brandon has a bad habit of taking things that aren't his and hiding the evidence in his room. I love having a hubby that works for an electronics company. Brandon is enjoying shaking his butt at the camera. (insert eye rolling here)

Well, now that the cat is out of the bag with my family, I can share that we are taking Tommy on his first road trip in a couple of weeks to meet our families. Outside of my mother in law, nobody on either side of our families has met him. Today's appointment confirmed we are cleared to leave town! We have his swallowing study and see his ENT on Monday. Other than that, we are just hanging out waiting for our trip. We are going to Kentucky. I am especially excited for my mom to meet him.

Monday, May 14, 2007

Bug Spatchu-wah!

Did you ever just want to capture a moment or a phase coming out of your little one? This is one of those moments... Brandon just came racing down the hallway with a flyswatter. Apparently, he has seen a bug of some sort...except he is yelling as he runs "I gotta get the bug spatchu-wah!" over and over. I guess we now have a "bug spatula" in our home. Nifty device!

Funny For Mother's Day!

Happy Mother's Day!
I saw this video on a message board I belong to. Funny, funny stuff!
It cheered me up because I had a pretty lousy mother's day. Not a big deal I guess, just the fact that it was just an ordinary day around here. I whined about not getting special treatment, but it got me nowhere, haha. This video made me think of Matthew and Brandon in 15 years!

Friday, May 11, 2007

Alex--My 16 Year Old

As you can see, I only have 3 boys in the picture to the right. Someone is missing. My first true love, my firstborn, Alex. Alex is 16 and I have not seen him since he was 8 years old. I lost him to my ex husband on a technicality. Our original agreement was 6 months and 6 months until we could iron out a divorce. It was during my ex's 6 month turn that he filed for divorce. He asked for custody and in return would not request a paternity test for Matthew (who had just been born) and grant me sole custody of him. He promised I could still see Alex every summer and holidays. Since I was broke and couldn't afford a lawyer, I saw no way out. Alex did come to live with me that summer and we had planned for him to stay an entire year, but it wasn't meant to be.

Michael (my ex) had remarried soon after our divorce because he had gotten his girlfriend pregnant. She had her baby that December. Michael's mom paid for Alex a round trip plane ticket to come see his new sister. He would be home right after Christmas. At the same time, Rob quit his job. A day or two before Alex was supposed to come back, Michael found out about this. He decided from our conversation that we could not provide a stable home for Alex, and therefore, Alex would not be coming back.

He left his clothes, his toys, pictures, Christmas gifts, everything. He bought him all new stuff. Every summer there was another reason why he couldn't come see me. Everything from I didn't give Michael an "itinerary" two months in advance, to he was going to Iraq and he didn't want to take Alex away from his sisters at the same time. Last summer, I had it all together. Money, transportation, time off...and a month before I was due to go get him, I was put on strict bed rest for pregnancy complications. It's not so simple to put him on a plane...I am required to physically show up at an appointed time Michael has approved.

At first, they were in Maine and I was in KY, then I moved to SC the same year they moved to NY. Michael had to rejoin the Army because he couldn't find a job. Ironic, huh? The reason I couldn't have him was lack of a job. Sad because I had a full time job in less than two weeks after he decided I could not provide a stable home and was able to support Rob and Matthew on just my income!

Now here comes Mother's Day again. My baby is not here. His dad is in Iraq and he lives with his step mom. He has never met Brandon or Tommy. He saw Matthew when he was a year old. My heart breaks when I think about the days I have lost. He was 8! A little boy with big dreams and a big heart. Now he is 16. He's not my baby anymore...I sit here with tears in my eyes wondering how different his life would have been if he would have been with me all of this time. It took me a long time to forgive myself for leaving his dad and tearing up his life. He and I have made peace with this and he is glad I left his dad. He isn't a nice person. (obviously, he's kept my child from me for 8 years)

I love Alex with all of my heart. He has grown into such a strong young man. He keeps a close guard on his heart these days and doesn't let many people get close to him. I feel so fortunate that he allows me into his world. It may be just telephone and internet these days, but at least we have communication. Here is a then and now of him. The current one is of him and his girlfriend, Cassandra. They have been together over a year.

Wednesday, May 9, 2007

7 Random Things

OK, Nancy has tagged me. I don't know many bloggers out there yet, so I have no one to tag! So anybody wanting to play along, I tag YOU! Here goes, 7 random things about me:

1. I was in Job Corps, but didn't complete a trade.

2. I lived on the coast in Maine for 5 years. It was the most beautiful place on earth.

3. I weighed 95 pounds when I graduated high school.

4. I had pink hair my senior year.

5. I can only hear a telephone conversation clearly with my left ear, although I have no hearing loss.

6. All 4 of my sisters have a tattoo. I do not. (and no plans to ever get one!)

7. I study and collect all things about faeries. ( I AM part Irish!)
I had a mini-vacation today! It was grocery day here. I try to go once a month and stock up. We make enough trips to the doctor's office as it is, so why add more trips if we can do it all at once. Rob usually waits in the van with his laptop and watches dvd's with the boys. Sometimes, I take Brandon in with me for mommy time. Today, we put a spin on that. Our friend, Ernie, dropped me off at the front door of Walmart and headed back to my house. Rob stayed at home with the boys and Ernie while I leisurely strolled around doing my shopping. No rush, no screaming, no little hands taking things off of the shelves, no whining for cartoon cereal.

By the time I was done, my cart was overflowing and I came in $10.00 under budget. I was about to leave when I realized my cashier had taken my coupons, but had not used them. I went back and since he happened to be a manager, he just scanned all of the coupons, and gave me back cash! $7.47 worth! I was so impressed that something good happened to me. Rob came and picked me up while Ernie sat with the boys for about 30 minutes. Scary! He had to suction Tommy while we were on the way home and went too far. He's never had to do that before, so even though Rob showed him how, he panicked. Tommy is okay. He had "pink trach" for a little while (a few drops of blood in his secretions). I put saline down for moisture and he was fine.

The groceries got put away pretty quickly. I even had dinner ready in less than 45 minutes. Now all of my babies are asleep at a decent hour, and I am settling in to watch The Dead Zone.

Tuesday, May 8, 2007

A much needed laugh

Little boys will make you laugh! Just when I think I can't take anymore, one of them says the funniest thing. Brandon is always pushing my buttons, and looking for new ways to do so. Every time I tell him to do something, even if he is in the middle of doing it, he will tell me "no". He is going to be the class clown at some point. I can feel it. So today, he is being his usual charming self. I don't even remember what I said to him. I do, however, remember the reply. Without missing a beat, he turns his back to me, raises his bottom into the air and says "Talk to the butt!"

I just lost it. I needed a good laugh. Now someone reading this might be just appalled to hear a three year old say that! Get over it. He's three! I realized long ago that this is not the "Cleaver" household. I have 4 boys, all with a unique personality and beautiful smiles. They are all sarcastic, mouthy, loud, and rambunctious--each in their own way. But at the end of the day, a phone call to Alex always ends in "I love you". Matthew hugs me. Brandon kisses me, and Tommy smiles.

Yeah, the house is a wreck. Something smells funny in their room. Dishes and laundry never get finished on the same day...Who cares! My boys made me laugh today! And to any of you out there thinking my boys need discipline or need to learn respect...Lighten up, I've got this one! "Talk to the butt!"

Sunday, May 6, 2007

Baby birds!

Today, the family all went outside to clean the yard and mow. Rob calls me to look at something. This is what I see.

Baby birds! Poor babies, the nest was on the ground a few feet away. Then we turn around and find this guy.

Here's mommy and daddy searching frantically.

Rob used sterile gloves (funny, how many people have sterile gloves around???) and we put them back in the nest. We then sat the nest on our patio table.

Our trees are too far off the ground to even try to put the nest back. It took several hours, but we caught mommy and daddy feeding the babies later in the afternoon. Don't know if they will make it. I am afraid a cat is going to get them. Only time and nature will tell...

UPDATE: I have seen mommy bird swoop down and feed her babies twice now! Once last night and then about 1:15 pm today. I think as long as the neighborhood kitties stay away, they might just have a fighting chance!

Thursday, May 3, 2007

Respite makes me cranky.

I could not have asked for a better day "off" from doctor's appointments. It is thundering outside, and I am hoping for lots and lots of rain to cool us off. Our little tin box we call home tends to overheat rather quickly. Tommy is on the verge of a nap that he is fighting not to take. If he is anything like mommy and daddy, as soon as the rain hits the roof, it will be off to sleepy land.

We qualified for respite, but as it turns out, it might not be what I had in mind. My idea of respite is a break from caring for Tommy. I need a competent individual with experience dealing with cardiac and trach babies to care for him. As it turns out, our early intervention program program provides respite in this manner: We first request a voucher from our caseworker who handles a total of 10 cases. Of those 10, she decides who is in most "need" of respite at the time of our request. Then we are issued a voucher, good for about $7.50 an hour for his care. Now comes the worst part. WE choose his provider. Any person we want can provide the respite. That is a HUGE problem! We don't know anyone that can do this for us! They don't have a list of trained individuals or nurses we can pick from. It's just "here, go find someone, then we will pay them".

First of all, I don't have too many friends, and the ones that I do still have are so busy with their own lives that they can't even babysit Matthew and Brandon, much less go through training to care for Tommy. Every person left alone with him must know how to take care of him in an emergency. This includes knowing how to suction his trach, cpr with a trach, and emergency trach changes. Then I must train that person how to feed Tommy with a pump and give his meds through a G tube. Oh, and how to spot signs of heart failure! I swear, I feel like making up an imaginary name for the paperwork and cashing in my vouchers! (they will be made out in my name)

Ok, I am done with my rant. I want today to be a good day. It's nice to not have to schedule my day around who is going to give him therapy that day. I am about to feed Tommy. He always goes to sleep when he is getting fed. Maybe Brandon will take a nap too. NO! Scratch that, no nap means he will go to sleep early tonight! Here's hoping!

Wednesday, May 2, 2007

Just glad to see the end of this day....

It's just been one of those days. It started about 30 minutes before Tommy's OT was about to arrive. Rob decided he needed to buy some car so he could have the motor out of it for a car he has had sitting in a barn for 10 years! He wanted to spend $350 that we don't have. I tried to explain it to him that we are broke, only enough money to pay our bills, it didn't matter. He never heard a word. Except "NO", and to that, he punched a wall and left a hole. (didn't take much, it IS a trailer)He leaves and goes back to work and I get back to trying to change Tommy's trach ties. Cue Brandon! I asked him not 5 minutes before if he needed to go potty and I was told no. That little snot stands in the hall outside my door and pees all over the floor! I am glad it was not on the carpet, but furious nonetheless!

That is when Matthew yells that the OT is here. I ask him to let her in and tell her I will right there, and to please bring Brandon a pull up. Knowing someone is in the house, Brandon starts to run into the living room-naked. I am yelling at Matthew to hurry up with the pull up, yelling at Brandon to stop stomping in his puddle and NOT to go to the living room, and this poor OT is waiting on my couch! AAAHHHGGGG!

I finally get Tommy dressed and to the living room. He has a very good session, only interrupted 5 or 6 times by Matthew and Brandon. They know I cannot jump up and spank them in front of her, so they are horrible when someone is here. Apparently Rob feels the same way, because he decides to come back by the house when the OT is here to print checks out on the computer for the purpose of going to a check cashing place to get the money for his car. I give him the evil eye. He smiles and walks out.

After the OT leaves, he calls me and asks if he can borrow $100 from our bank account if he returns the money tomorrow. Tired of fighting, I agree. After work, he picks me up and takes me to the bank. I get his $100, and we meet up with his best friend (and partner in crime) who has come up with the other $250 they need for this car. As we pull up, the guy has just sold it to someone else and they are signing the title over. (it was on the side of the road with a phone number. The guy said to call when they were ready to buy) Rob is really mad, and I think part of it is directed towards me. We watch the guy that has just bought my hubby's dream start up the car.

Now imagine the look on Rob's face and the delight on mine when a HUGE puff of black smoke pours out of the tailpipe. Rob sheepishly says to me, "well, I guess there was a reason I shouldn't have bought that car..." Hmph. Men.

Diagram of Tommy's Heart Defects

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