has officially ended. It was a good time…mostly. We’ll go day by day…Saturday (1/10) we spent the day with my parents. We had breakfast with them and then went to the Magic Kingdom. Janson rode Big Thunder Mountain, then made the discovery that she really DOES like roller coasters. We were thrilled with Guest Relations…they took our letter of medical needs and gave us a pass that let us use Jack’s stroller as a wheelchair! Oh my gosh, that was so nice..we didn’t have to get him in and out all day long. It made it way more bearable for him as well. He got a Wall-E toy that day and carried it around all week…and still (he announced that Wall-E has a No-No just like him! We thought that was hilarious…since Wall-E’s belly opens, I guess Jack figures Wall-E is just like him!). Janson discovered the joys of pressed pennies (and we are out $43 because of it!). Sunday (1/11) we were at Hollywood Studios. Mostly, we were at the Star Wars area. Janson got picked to go to Jedi Training Academy. She got to go on stage and fight Darth. You never ever saw a kid so happy in your whole life! I thought she was going to cry—she told us later that she didn’t want to fight him, she wanted to hug him! Monday (1/12) was our 11th anniversary! We got up that morning and Janson and I went horseback riding. We had a lot of fun just hanging out together. The rest of the day we spent at EPCOT. They rode rides and Jack and I watched people…Tuesday (1/13) we went to the Animal Kingdom…Hello Geraldine! We met up with CJ and Mike–who are Janson’s favorite hippo people (and some of our favorite people, period!!!). Unfortunately, it rained, so we called it a day early. Wednesday (1/14) we were back at EPCOT. We really were quiet that day. Just looked around a lot, rode very few rides, and just really enjoyed our time together. It was a good day! Thursday (1/15) we were at Magic Kingdom again. That was the day of Big Thunder–Janson and I rode it 6 times. We’d fast pass, get on, get off, wait, get on….she loved it! Friday (1/16) we finished out our week with Animal Kingdom again–and we got to see Geraldine! Unfortunately, this was the day that was–of course–the disaster day. You know nothing “normal” can happen to us…Janson and I had gotten on Expedition Everest (this huge roller coaster). We were seated, in the next to last row, and the people said there were technical difficulties. SO we waited about 15 minutes or so and the ride started. We went up the big, giant, steep hill, went around a bend, up another hill, and then you go backwards through the dark, to the pinnacle of the mountain—which is where we got stuck. In the dark. In the cold. In the next to last row. Backwards. Janson cried. I was trying to not be upset for her. We waited and waited and waited, and finally they sent people to rescue us. With our feet on land, we had to then walk 17 flights of stairs down to the ground, where they handed us passes to get on the ride again….whenever they fixed it. We bought t-shirts that say “Mountain Rescue” on them…and we did ride again…it just took me all day to calm Janson down. All in all, it was a good week. Jack had moments. I know there is no way we can ever fly with him…he has far too much equipment! There were noises, lights, and things of the sort that he didn’t like at all. He made his opinions known. And you know, there are rude people everywhere. I almost had it out with a lady one night. She was allowing her toddler to play on the handicap ramp to a restaurant. She was sitting at the one end, and her husband was at the top–with the baby running between them. I said, “excuse me” to go up the ramp and she said, “You can’t take strollers in this restaurant!” So I very calmly said, “yes I can,” and showed her my special magic pass. In reality, I wanted to hit her. I wanted to ask her how much fun she was having with her kid—and if she had to plan every single moment of her day around her kid’s medication schedule. I definitely think that there are things Disney could do to make it more accessible, but that’s for another day. In other, non-vacation news…we are finally getting the bed! After all the drama, hospital grade vs. home care bed…we’re getting a crib for him–supposedly this week! It looks a lot like the Big Red Prison Crib, only it’s blue. It has an IV pole for the pump and the head goes up—I’m so excited. I think this will really make his life a little easier. We’re mildly concerned about how they will get it up the stairs to our bedroom, but we decided that if it won’t fit, we’ll move the dining table to our bedroom and sleep downstairs (just kidding..we have no idea what we will do. We might have to switch rooms with Janson…this week could be really fun.). Bups took Janson to the grocery and Jack is asleep on the couch…all is well with the world. I will post pictures later…they’re home and I’m back on Mom duty!

Jack’s first shot at the Train

Yep, those are Depends that I decorated with Love for my BFFs!

The gang prior to trick-or-treat…look, we were still smiling!

Yes, he went as an ostrich. You should have heard all our neighbors laughing at him!

Well, I didn’t win Rachel’s contest. But it’s totally OK…because I realized, in the process of doing it, that I was (gasp) HAVING FUN! ME, ME, ME…having fun! I almost forgot what that was. I mean, I am the Queen of sarcasm and jokes, but deep down, I haven’t done something just for the heck of it in awhile! I had so many bubbles in the tub that I couldn’t hardly find the water!

You know, I think sometimes I get bogged down by the weight of what goes on every single day. I listen to doctors and therapists–and random strangers–tell me things, and I lose part of who I am. I become sad and cold and mean.

There are days when it hurts to see what other people’s kids can do. Like eat. Without choking! Or drink out of a sippy cup.

BUT, I know God has a plan and He chose us for Jack, and this is all going to be OK. I just need to have more fun!

So—today we are going to the hospital (no, not his hospital, mine…a nice visit to work ought to remind me how thankful I am to be at home!! Katy–I’ll give them a kiss from you!)! Then we are going to make an attempt at the mall. It’s suddenly gotten freezing cold here and Janson needs uniform pants for school.

Back to Rachel–you know, my new BFF. Well, not only did I get a PERSONAL email from her, BUT, if you look down to the post where I said I emailed Rachel, she commented. Yes, I am pretty sure that we are just about as tight as friends can be at this point. Alissa and I are working on the Master Plan to get her to come to Savannah. I mean, I have the guy with a hotel. We just have to come up with a reason, and a plane ticket….and whatever else she wants.

OHHHH….in other related Medical news…Jack has had 2 days of his medication. The first night, he was asleep in NO time, but was still awake 4 times in the night. Last night, we stayed up and watched the Great Pumpkin (I’m so glad it’s found year after year), and then I gave it to him. He only got up twice! I think that’s a great improvement! I got like 4 hours of uninterrupted sleep. Maybe that’s why I am not compeletely functional and kind of all over the place today…or it could be the 3 cups of coffee I’ve already had this morning…..

Today’s Photo: Liss and I took the Hippos out. Well, in true Jack fashion—I got him out of the car, put his hat (head) on, he took two steps and fell face first in a mud puddle. The combination of water and dirt almost did us in…Let’s hope Halloween turns out a little bit better!

I know this may come as a shock–and it sort of hurts my heart as well—but my time dealing with Social Security is over. (everyone, “AWWWWWWWWWWW”)

Yes, we are officially denied. Which means, NOW we get to deal with the Infamous Department of Children and Families in order to FINALLY Get him the help he needs! Doesn’t it all sound delightful?

I got sick last week. I actually didn’t leave the house to go to therapy Thursday! I finally went to the doctor and got all drugged up. I’ve got some antibioticals, some nose sniffing drops, and some allergy pills. The allergy pills get me all wound up so I take them with my coffee in the morning! My mornings are going SO much better than usual!

Mr Jack…hmmm…our little enigma. He started with another new “rash”–I totally blew it off as diaper rash, as it was in that general region. Well, as it turns out, it’s eczema. So we had to change his soap, our soap, detergent, etc. And did you know that it flares up with stress? SO, now I am stressing over what’s stressing Jack out. I’m sure whatever it is—it’s my fault. Probably the constant, “Jack, honey, please eat something!” Yeah, and they want me to wash him more often. I suggested that he come do that for me. HA! He’s actually having a really good week so far (knock on wood).

My parents were here on the weekend. Last time we were in Orlando, Jack saw this giant witch at Old Time Pottery. She laughs when you walk past her. And she’s not really one of those creepy, ugly witches either. She looks like an old lady for the most part. Well, Mother bought her and brought her to Jack. He’s obsessed. He talks to her, kisses her, sits by her….he thinks she’s real.

Other than that, we’ve been laying low. I’m hoping I can get to feeling back to normal so we can get more accomplished. I feel very far behind right now.

Do you love the hippos? Janson says, “Hippo Halloween!” I love it!

I don’t even know quite where to start on this one….so I’ll start with Monday. Monday, no school. Janson goes with me to therapy, which was nice. Jack was SUPPOSED to get his helmet, but it wasn’t quite fitting right, so we reordered it. He had an awful day at therapy, and we got kicked out again. Lovingly, but kicked out nonetheless. We all came home and took a nap ( I worked all weekend—and it was the first time since Jack came home that I worked the ENTIRE weekend. It was painful. And just yucky, but that’s another story!). Tuesday: I am awakened to Jack slobbering on my face (which was really sort of nice, he never wakes up happy). We lovingly refer to him as The Wedge now….somehow in our stupor of tiredness, with the child who refuses to sleep through the night….we’ve come to the conclusion that we need sleep too, so he’s ending up in the bed with us about 4 in the morning, when we tire of the screams. Although, recently, it’s been earlier than that. But anyway….he’s the Wedge. So, he and I start down the stairs–where we meet Sebastian (who’s looking a little funny—sort of pasty white with a tinge of green around the gills). He says “give me the baby—go help Janson!” I am still relishing the slobbers, and can’t fathom what Janson might need. I thought he wanted me to do her hair or something….so imagine my shock when I discovered her laying on the living room floor with blood all over her face. I mean, everywhere! So, being the compassionate nurse that I am—I go get some wet towels, and plop down next to her. I ask her if she’s hurt. She says no. I ask her where the blood is coming from. She says her ear. Well, in all my years I have never seen THAT much blood come from an ear. I look to make sure her earring is still intact, and it is. So then my head is clearing and I realize that this blood is pooling in her ear. POOLING! She sits and it just pours out. So gross. So I clean it the best I can, and stick a cotton ball in it—telling her to lay still. I have the phone in my hand to call the doc and I start saying “what did you put in your ear’….she says nothing and she’s hysterical. Doc says come on in (being that we practically own the doctor’s office, they are very accommodating). We get there, she sees J. She says–she needs a specialist. Stay here. An hour later we’re in the specialist’s office (did I forget to mention, Jack’s got water therapy at this point? I had to arrange to get him there and J to the doc at the same time! I am at this point wondering what God is trying to teach me). The specialist comes in and (he was wonderful with J. Laughing and cutting up and playing with her—highly recommended if you ever need an ear specialist in Savannah!) proceeds to suck the blood out and then…he pulls stuff out. I won’t describe that. Afterwards, he tests Janson’s hearing, packs her ear with sponges, and gives me some medicine. Then he gives the verdict. She has this thing called ear canal cholesteatoma. ( http://www.earsite.com/tumors/cholesteatoma.html ) It’s not really good. And she has lost all the hearing in her right ear. So for the next week we do the drops in her and then next week we go back so he can see how much damage has actually been done. Pray for us. PLEASE! My mom called last night to talk to her, and she said she couldn’t talk….because she uses the phone on her right ear and she couldn’t hear. I told her to use the phone on the other side and she said she didn’t know how! And the biggest tragedy of all…BooBoo Head (the most loved hippo of all–the original hippo–the one she can’t go anywhere without) got blood on her. So we had to wash her (which scared me because she’s got some seam issues from all that love and I didn’t want her to come undone yet). But she lived through the wash and is now very clean and happy. wish it was that easy for the rest of us….

Hoping you all had a wonderful holiday!

It was busy–not surprising at our house! Last Friday, in one of my most splendidly stupid moments, I managed to splash grease in my eye (maybe in hopes of being a pirate for Christmas?). Janson, bless her heart, was smart enough to call our neighbor and she came over…well, after a trip to the ED, and some antibiotics–I can finally see again! It was ugly there for awhile, but by Christmas, I could open my eyes fully again!

Then came Christmas eve…Janson started to complain that her tummy hurt (me, the good mother that I am, thought she ate too much junk). She didn’t want to sleep, didn’t want to eat….we woke up Christmas morning and she was still off. But she went through the day and didn’t complain too much—yesterday was still some the same, only she had a low grade temp and was grumpy. Today, I had enough and called the doctor….she was seen and she has a kidney infection. Poor thing…so now there’s 2 kids on antibiotics!

Jack is holding his own. He’s very excited by his new toys…but he would much rather get into his sister’s things–much to her chagrin!

So, that’s it in a nutshell. We haven’t made it too far out of our house…except to the doc or to the Kroger for medicine!

Enjoy the pictures…BooBoo (the most loved hippo) got a new leash and collar!

It was a great weekend! The birthdays were a zoo! Lots of our friends from church were there, and Janson was thrilled to have Mom and Dad and Non here too! They were so cute!

Jack hated his cake. He touched it, burst into tears and screamed until I wiped it off! He did like presents, though. He thought it was fun to play with the papers!

Janson got lots of books and was really happy to just have friends here to play with.

No new real news on Jack. We go to the doctor tomorrow for his year old check up and Janson’s 8 year. That should be fun! This Thursday he starts speech therapy! And next week we have a visit with the stomach doctor. There’s always something!

Enjoy the pictures! More later….

He’s 1????!!!!!!!!!!

Happy birthday to my little man! He had such an interesting day….

Janson started back to school this week, so we have to drive 40 minutes to drop her off and pick her up…which is just lovely. But she loves it, so it’s worth it! Non is here too, so at least I have company to talk to !

Therapy is going well. Jack is starting speech therapy next week, since he’s a big boy now! And on his birthday, he got to see his favorite person, Ian the Brace Maker, so life was just about as perfect as it can be!

We’re having the birthday extravaganza today–Janson’s birthday is tomorrow, and Jack’s was yesterday. It’s the Darth Hippo Vader (yes there is such a thing) meets Elmo birthday party! Pictures to follow—and I am sure there will be lots of stories to tell!

Just wanted to get some new pictures on here. He tried to climb the stairs the other night…we followed him…he thought he was big stuff! The other ones are from his actual birthday. Janson took hippo cookies to school!

More after the party……

Wednesday, March 28, 2007Non says I need to take back what I said…I am not a bad mommy (sorry Non). Jack went to the pulmonologist today for his monthly RSV shot. He weighs 16 pounds and is 25 inches long (woohoo he grew finally!). She said that because of the CP she wants to see him again in August to evaluate him to see if he should start the shots again in September. Poor thing, he screamed and he gave me this look like “Mom, are you kidding me..how can you let them do this to me?”! So that was our excitement for the day. Now he’s sound asleep. On a lighter note, Janson made sure he went to the doctor dressed appropriately…hippo socks and a hippo outfit! And Boo Boo Head sits out to wait for her to get home. Janson has to do a Bible verse at church tonight. She’s supposed to dress up–she and this other little girl made up some little “routine” to show to everyone…I guess they are doing a version of American Idol with Bible verses. Keep your fingers crossed…you know how she is, she’ll probably cry and won’t say a word!