All day to myself!

I have had the most wonderful day all to myself. Rob took the older boys with him to a friend's house. I have had the past 8 hours to do nothing but watch girly movies on cable and hang out with Tommy. I did manage to make myself do one load of laundry but I have not put anything away. Rob is on his way home now and bringing me some food. Oh, speaking of Rob... they're home! It's been such a perfect day. I'm so glad they're home.

Dozing off During Homeschooling

Boy, getting back into the swing of things around here is proving to be a challenge! Since the first of November, things have been askew. Tommy has had 3 hospitalizations and every time, the boys have to stay with a sitter so Rob can work and I can stay with Tommy in the hospital. Homeschooling has been hit and miss. Now that the holidays are over, I've been easing Matthew back into his lessons. Yesterday and today, I've had him doing one set of multiplication tables and working on a story. He got these great books for Christmas that have lines at the bottom and space for a picture at the top. The story is coming along so far.

The biggest obstacle is that I am flat out exhausted! I'm up and down with Tommy all night. Once I've spent the time getting Tommy ready for bed each night, from beginning to end, it's usually an hour. That means I'm done around 11:30-12:00. Then I have to contend with Matthew and Brandon fighting and not wanting to go to sleep. I can't go to sleep before them because they get up and get into everything. That means I don't hear quiet until about 2:00! I usually unwind and fall asleep between 3and 4, only to have Tommy wake up around 6 for suctioning, and then Rob getting ready for work at 7. Then I'm up again at 10 to start all over again.

I'm hoping that I can catch a catnap while Matthew writes his story. Tommy is almost asleep and Brandon is watching Shrek the Third in his room. Hopefully the phone doesn't ring like it always does when I doze off! (or my instant messenger ding, or UPS bringing me a package) I have a sneaking suspicion that Matthew will run off to watch Shrek as soon as he hears me start to snore. That means more work for both of us. I can't help it. I even had a Coke and I can't keep my eyes open. Time for that nap!

Our New Year's Eve

Happy New Year! It was so nice to spend New Year's day home with my family instead of a lonely hospital room. I guess I would have been fine. I would have watched the ball drop on tv there just like I did here. We had so much fun last night. Rob got out of work around 5 and went and picked up the boys from the sitter. Then he swung by the hospital and sprung us outta there! We had to stop and take Brandon to go potty at a nearby McDonalds so he wouldn't flood our van, then we were off to find some dinner. After a quick pass through the drive thru, we went to a huge holiday lights display here that the boys have been wanting to go through all season. We go every year. It was nice to see a few new displays.

After we drove through the lights, we headed to the first of 3 local Walmarts. Our router that we use for our phone gave out on us the night before. We needed a specific type of router that we could have picked up at any Best Buy, but they were closed for New Year's Eve. We eventually found what we were looking for, and it was about $30 cheaper than I expected. We also picked up lots of goodies and soft drinks. I even sprung for two bottles of sparkling cider. The kids were so impressed with the pretty bottle and the bubbles in their juice!

I spent about 10 minutes on the phone with our internet service provider setting up the new IP address and cloning it to our modem. Then it was all about tweaking the software. After an hour (and toasting the new year) we were online! A quick check of the phone line proved to be disappointing. A prompt told us that there was something wrong with our service. It took a while to find a phone number for Vonage. What a pain in the neck! The first person I talked to kept going through a trouble shooting menu and basically undid everything I had set up with our ISP. I was flaming mad. For some reason, my cell died and she was gone. She didn't even try to call me back!

I called and got a new person and when I explained what was going on, he was just appalled! He said all that needed to be done was to register our new router! There was nothing wrong with it and all of the stuff the crazy woman I got the first time was doing nothing but making a bigger mess! He had our internet fixed and our phone lines humming in less than 10 minutes! Now I have a brand new wireless connection for my computer and my phone line! No more cables snaking across the floor, no more stressing out because we've been booted offline again. Hooray!!!!

I never thought I would spend New Year's Eve in Walmart looking for a router, and then the next several hours being tortured to set it up! All's well that ends well. Happy New Year, everyone!

Hum Drum Hospital Stay

I just spent the night with Tommy in the hospital. He's been having blue spells with coughing, clammy skin and drenched in sweat in the middle of the night. I thought it might be his heart, so I emailed his cardiologist. He asked me to bring Tommy in to be admitted. Turns out he has a viral infection. Fancy word for the cold. Tommy is not typical, so when he gets even a little cold, he is potentially fighting for his life. Since the cold is a virus, there are no antibiotics that can be taken. We just have to ride it out. This is nowhere near as bad as the last time he got sick. We're very lucky! He's fine until he starts to cough, then he's turning blue. As of now, he is laughing at me, trying to get me to look at him!

He will be getting Benadryl for night time and we are going to let him sleep upright in his swing for the next few days to help with the congestion. It doesn't help that it has been raining. Rain makes his secretions run like a faucet. I am happy to say he is a comfortable 79% oxygen saturation level right now. We're going to see the Christmas lights tonight at our local county park. I can't wait to see Tommy's face. He is moving up to his big boy carseat tonight. Yay!

Sorry! I meant to post earlier!

We qualified for both programs! The medically fragile program has several other homeschooling families, so I am going to try to get together with a couple and see if we can work our something that would benefit all of us so no one would miss time with any of our kids.

I'm very excited about CLTC. They are shooting for 40 hours a week for a Personal Care Assistant to come to my home and tend to Tommy's needs. Whether it be a diaper change, a bath, or doing his laundry. She will be at least an LPN, so she can suction and feed him too! Yipee! We have a little bit of a wait on that because the coordinator said it takes about 10 days to hear back from Tommy's doctors. The doctors have to write orders for nursing. I told her which ones she would see the best results from the quickest and gave her their information. We are hoping for 3 days 2 nights. Woo-hoo!

I will have to post another update later. I am so tired. Tommy is getting blue again and he is getting harder to manage. He's waking up in the middle of the night coughing, blue, clammy and sweaty. I sent an email to his cardiologists. I'm going to try to take a nap because I had to get up with him very early this morning. He was desatting and I had to give him a breathing treatment.

A Little Nervous

Tomorrow, er, today I should say, as it is 1:30 in the morning. Anyway. I have representatives from two different programs coming to my home to assess Tommy tomorrow. At first I was really excited that we have potential help. I just don't know if it is going to be the right kind of help. Tommy is just falling through the cracks here. Until South Carolina gets its act together and a Medically Fragile waiver is signed into law, then we are just bobbing along hit and miss.

I still want them to come to our home because I want to hear what they have to say. I'm worried with the Medically Fragile program that transportation would be an issue. It has been suggested to me more than once to put my children back in public school. I'm not looking for the school to babysit my children. Look at all the germs they would be exposed to and potentially bringing those home to Tommy. Not to mention I'd have to send them to school in body armour. The school actually had an article in the paper at the beginning of the year advertising bullet proof backpacks!

The other program I don't know much about but I think I am going on a wild goose chase with them. I honestly am starting to feel like it's just easier to go it alone than to deal with the hassle of the different programs. Maybe I will be surprised, but I've been down this road before. In just 12 hours, I will be finishing up one meeting and preparing for the next.

If I won the lottery, I wouldn't have this problem. I'd have a housekeeper to tidy up and cook for the boys. I'd have a nanny to look after the boys when I had doctors appointments, and I would have a LIVE IN nurse that I pay privately to be my extra hands and eyes for Tommy. I'd actually have a room in my home just for homeschooling. No more cramped book shelves full of curriculum and reading on the couch. Hopes and dreams.....

Christmas Pictures