pictures

more pictures…

June 19, 2009 | Author Heather

post party family photos….the kids were thrilled!

In an attmpt to squish the rumors, Brian and I got married. (kidding!)

Dani and Jack….

Bria and Janson….

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Perapalapalooza!

May 3, 2009 | Author Heather

I promised, so here it is!

Let me start with a conversation Melissa and I had a month ago. It went something like this:

H: “I miss you.”

M: “I miss you too…sigh”

H: “I want to move home and live next door to you.”

M: “Me too…sigh…”

Clearly, I’m a little homesick lately (ok who are we kidding. I want to move back in a HUGE kind of way, and I have a hard time accepting that this may not happen.).

So, we decided to ease both of our pain, we would meet in Jacksonville for a weekend. It’s halfway for both of us. We booked the hotel, and planned for 3 weeks!

We counted down minutes. Seriously. The entire trip there we were text messaging about where we were and how long it would take us….also what we were eating, drinking, and where we stopped to have a potty break! It was hilarious!

We arrived to the hotel first, and much to our complete joy, they gave us a 2 bedroom suite (it’s glorious to be married to the hotel guy!)!!! That meant we could co-habitate on top of it all! Once they arrived, we squealed and hugged for awhile. You know, girl stuff. The hotel was in the middle of this shopping center. And I’m not talking strip mall. I’m talking like 500 shops and restaurants! For the first time in my life I got to walk in to a Sephora! (more about that in a sec)

So, we packed up our children and headed out to see the sights.

We stopped for a snack, first. That didn’t last long because Jack got a little fussy.

Then, we went to Sephora. We soaked in every corner. Every smell. Every glorious sample. And because Melissa was being sad, I even took one for the team and splattered bright purple eyeshadow on myself. That’s love. The boys went in search of a cookie for my little screaming boy, and then to check out the cooking stuff. We wandered like this forever and then realized we had to actually eat dinner.

We stop at this place called Maggiano’s. Family Style Italian. Supposed to be the best o’ the best. We wait forever for a table. We finally sit down. Janson is like ready to chew off her own arm. We order our dinner. They bring it in stages. Appetizers, salads, main course, dessert…all family style. So as our main course comes, I ask if Janson’s food is coming too…”Oh yes, it’s coming…” but I was wondering if they just forgot it. So, we kept asking, and Janson kept waiting. She didn’t get her dinner until we had ordered dessert. And, they didn’t have lemon cookies for her for dessert…AND, they still charged us for her. I was mad. Still am. The manager sent me an email offering us to come have a lemon cookie on them! Wasn’t that generous!?

The next day we went to the zoo. It was fun. No hippos. That was sad. But it was OK. It was a beautiful day. The girls were great, Jack slept a lot. We discovered that they allow you to feed the giraffes. So we get in line for tickets to feed. Then we line up to wait to feed. Well, Mel and Pat somehow got a few people in front of us. I was going to be camera-woman extraordinaire. They get up to feed the giraffe, and it turns around, walks away, and lays down! It was so sad! Luckily, they gave us tickets to come back later. When we did, they all got to feed the giraffes! I think that was the highlight of every one’s day! (Except for me and Mel. We discovered that the children’s play area contains 2 large elephant things to climb on—and they are completely anatomically correct. I can’t kid on this.) That night we ate in the hotel so we could go for ice cream at my new favorite place, YogaBerry.

Sunday, we had to bid each other farewell. It was sad. But Perapalapalooza 2.0 is on the books for my birthday!!! I love having things to look forward to!

Posted in Adventures with Heather, pictures, vacation | 2 Comments »

Reporting in…

March 26, 2009 | Author Heather

He’s awake! We’re in our room (340).

We got here and got registered…everything was fine. They sent us to neurodiagnostics, and there was not one soul there! We waited, and finally some lady came and told us we were not where we needed to be. When they FINALLY got us to the right place, Dr P was there (we didn’t actually expect to see him today) and he said he wanted to see what was going on with his main man! Can I just tell you how much I love this man!

It took 3 tries to get his IV (at that point, even though I am a nurse, I wanted to cry too…). However, once the IV was in, Jack spent some well deserved time in la la land! They let us stay with him, which was awesome! The hospitalist knows me, so she was really good about letting me help! I liked that! Of course, my helping was basically holding Jack and saying all the right Mom phrases…” I love you baby…” “it’s OK baby…”Anyway, she was telling us about a study that came out saying that there was no connection between intra-uterine cocaine exposure and later brain development…evidently she feels strongly on this, because she said when she was at Emory, she was interviewed by CNN and she told them she thought that study was full of poo.

He woke up fairly well. He’s a little grumpy and demanding, but he’s still really groggy. He’s less than pleased with the IV…and when he realized that the giant bandage on his head was NOT HIS hat…um, it wasn’t pretty. I just put the hat over the wires. Life is still not peachy.

So, he’s in his bed, with Wall-E, and his wires and his big box of wires and batteries…all while being video monitored. He thinks it’s funny to see himself on the video…I think it is a little creepy.

AND—Thank you ALL so much for sending him e-cards…we got 10 so far–I cried. I think that’s so nice! And we love you all so very much…thanks for thinking of us, and for praying, and for taking the time to sit down and email us today. It helps more than you know!

More later…when we have any more news!

Posted in EEG, Jack, neurologist, pictures | 2 Comments »

Catching up!!

March 24, 2009 | Author Heather

Ah….this week is nutty, so I will catch you up on the past week or so first!

We are still fussing with the Deeming Waiver stuff. I have no # yet, and I am kind of freaking out about that…especially since the Medicaid worker hasn’t bothered to call me back. It’s painful. For me. UGH.

My brother spent 10 days here. That’s right, 10. DAYS. Need I say more? My parents came for the weekend and got him.

Now, some bright and happy news.

I started school. So far, so good. I’m kickin‘ chicken! Well, they require some outside activities, like volunteering, etc…so I thought I would check into some local options. Well…I wrote to the Special Olympics and got this very exciting letter back! Seems like they have this program for little ones, aged 2-6, who will eventually be SO athletes…they take them and teach them how to kick or throw or whatever you want them to do…they get to be around kids like themselves (not to mention the parents get to be together!), and they get to play! I’m so excited! Jack is really going to be able to play! I cannot even tell you how that makes me feel…of course, I am me, so I am nervous about the feeding tube (or the fact that I don’t want him to crash and rip it out), but I sort of gave up the thought of him playing anything. I figured that just wasn’t in his cards. THIS, THIS is amazing! Plus, selfishly, I am so excited to be with other parents!

Big G is here twice a week now. That seems to be OK…at least for Jack! She has me doing homework—which is what I am supposed to be doing currently, however, I am avoiding! I have until tomorrow to get it done! She is working really hard to get him to reach some goals…and some are definitely harder than others, but we’re trying. Her latest project is a communication board for Jack. I’ve taken pictures of him doing all his daily activities. For example, let’s say Jack wants to attempt to eat something. I took a picture of his sweet potatoes, fruit bar, yogurt, milk, and sandwich. You Velcro those pictures onto a board. When you ask him what he wants, theoretically, he’s supposed to pick the one he wants. So far, I’m 0-3. It’s a good concept, only, I think that perhaps it’s a little too grand for my man. Hopefully it will work, but I think, like everything with my guy, it’s going to take time.

Thursday is our big day for the EEG. I don’t actually know much yet about it, but I know they will sedate him, I’ll get him back, and we’ll be there overnight. I think maybe they are not going to call me so I don’t ask too many questions. I already asked what sedative they would use so I could see if it would interact with his other medications at all…I can’t help it! Nobody is going to mess with my baby!!! So, this is it for now…I will report from the hospital when I get a chance! Please keep us in your prayers…that we might get the answers we need to help him to the best of our abilities, and that everything goes smoothly. Oh, and that my tummy doesn’t take over when the nerves hit!

Posted in Deeming Waiver/Medicaid, EEG, family, pictures, randomness | No Comments »

March is officially crazy!

March 9, 2009 | Author Heather

ewwwwwwwwww…..

our little ones…getting BIG!

the Man…year 3!!

Jack’s shirt says, “Not Lucky, Just Cute!!!”

Sebi was in New Orleans last week. It was the Marriott GM conference. His hotel won an award for guest satisfaction scores (yea!!!) and every one’s-favorite-valet-supervisor, Bill, was nominated by Sebi and won Employee of the Year! How exciting is that! We are so proud of Bill! So, anyway, I was flying solo. And I did better than I thought I was going to do. Jack seems to be acting as the super-metabolizer again. He’s a little loopy on the clonidine. But, we have to give it a chance to work. We’ll see… Friday, we attended the greening of the fountain!!! Our yearly tradition!! We had a really good time. Alissa and I go simply for the disgustingness of it all. It truly is the grossest thing ever. I’m fairly sure that all the people around us were swayed to believe it was gross too…because we were yelling, “EWWWWWWWWWW! Nasty!” and laughing really hard! Jack did OK. He was very loopy. But he tolerated it fairly well. We also found our man again. We got his picture with the kids for the third time! It was so fun. AND, we actually found out his name, so we no longer have to label our pictures “the man” or “our friend, the guy who gets the bands for the parade.” I think, maybe, we scare him. He can’t seem to understand that we wanted to have our picture with HIM….NOT the grand Marshall. Of course, in Savannah, being the Grand Marshall is more important than being elected president. You think I’m kidding….any good Irish Catholic in Savannah prays for a little boy, so he can grow up and be in the parade! Meanwhile, back at the ranch, Big G stopped by. I wasn’t home. She actually drove to my house to drop off a copy of the psych eval. She was NICE! This is a huge breakthrough! HUGE! I was shocked myself. Impressed, even! So, now I have officially re-turned in my paperwork. Let the wait again begin! Hopefully, by the time we have to be admitted to the hospital in 2 weeks, our boy will have supplemental Medicaid! Babies Can’t Wait also called. We are going Thursday to talk about Jack’s “transition.” We get to start working on our IEP (Individualized Education Plan). I’ve ordered a book about it, and I have several offers of help from friends and family. I am very grateful for this, because I want Jack to get everything he deserves. Janson’s swim meet is also Thursday. Speaking of Janson…on Friday when I got her from school, she was complaining about her shoes hurting. She had marks all over her feet. Yeah, the good mother I am…she had outgrown her shoes. We went shoe shopping. We didn’t have to buy any…because my 9 year old wears the same size as me. That’s right. I’m fairly sure she’s not going to be my size. I think my baby got all her daddy and aunt’s genes. She’s going to be tall and willowy. With big feet! More later!

Posted in Deeming Waiver/Medicaid, Early Intervention, husband, Janson, mothers, pictures, randomness | No Comments »

Sweatin’ to the iPhone….

February 25, 2009 | Author Heather

The test is done. For a minute there, I was pretty sure it was NOT going to be done. Dr. No didn’t want anyone to touch him. AND, seriously, how dare they put a hospital bracelet on him?!! We got there, and the receptionist said, “HEY! Where’ve y’all been? Haven’t seen you in a bit!” Pretty bad when the hospital front desk knows you by name…and could tell me ALL of Jack’s real names! So, we went to sign all the important paperwork and they took all the money I had (seriously, they were collecting sweat…total cost $2000!!! WHAT!!!). Then we were escorted to the Pulmonary Lab (we’re already very familiar with them). So our favorite nurse comes out to get us. Then, it all went downhill. Jack was NOT going to sit in any chair or have any sort of anything touching his skin! After the first attempt, the nurse kind of got snotty and told me if he couldn’t sit still, they’d just go on and cancel the test and try some other time. OK, I’m SO not coming back… THEN (cue Wall-E soundtrack), I had an idea! I found Wall-E on Youtube. Short little Wall-E’s but it worked for like 2 minutes. Then, he was done. So, at a complete loss for what to do to keep him calm, I turned to my BFF Rachel. (Remember Rachel…as in SIGNING TIME! Rachel?) They just started selling an app for the iPhone that has signs and video and music…OH MY GOSH, Rachel saved my life! Seriously, I can’t lie. I don’t know what I could have or would have done without her happy little self singing to Jack today! If I haven’t stressed it enough, if you have children, you should have Signing Time! Jack can communicate…it’s amazing! Rachel, should you ever read this, I thank you from the bottom of my heart. So does Jack. Really. (OH, and while I was in there waiting forever, because after they put this goo that makes you sweat on and they tied him to the electrodes, then they remove the electrodes and you have to sit there for an hour while they collect the sweat that comes out—anyway, there were other kids there, so I was TOTALLY shamelessly plugging Signing Time! and showing all the kids all the stuff. It was fun. Of course, I didn’t let them touch me or Jack–which I think one mom thought was kind of weird, but too bad. Germaphobe has to keep her distance….) (Go Google Signing Time…right now!) So they got like 4 drops of sweat and now we have to wait. Which is the worst part. But the waiting will not be boring…I, in my vast wisdom, decided my sister in law and brother in law needed to go away for their anniversary. So I volunteered to take the girls for the weekend! How fun is that?!!! Hopefully Jack will be nice, and all will be wonderful—although, in past experiences, there’s usually one giant fight and lots of tears. Girls will be girls. Did I mention it’s supposed to rain all weekend? Yeah, hmmmm…prayers…lots of prayers!

By the way, Vero and Brian…Happy 18th Anniversary…I love you so very much!

Photos: AFTER, I tried to smooth it over with a cookie. It didn’t work so well… DURING, how dejected can one person look? It nearly broke my heart!

Posted in family, Jack, pictures, pulmonologist | 3 Comments »

Third Place..a bed..and my heart’s changes…

January 26, 2009 | Author Heather

MY ever-so-brilliant daughter got third place in the Spelling Bee! OK, OUR daughter. It was the best day! She was so nervous. We did her hair pretty before school, she studied…she stood up, and I swear I was shaking more than she was! Her first word: nurse! Well, round after round, Janson’s friends got knocked out. This one skipped a letter, this one forgot the plural form…at round 10, I was sure I was in the wrong place. Round 15, it got tough. Janson messed up by accidentally saying the word in the middle of spelling it. She was so happy with herself! Third place is a good place to be! Then, there is the whole bed saga…which I THOUGHT was taken care of. Case Manager V called Friday to ask how Jack was enjoying his new sleeping arrangements. I told her he was doing fine in the car seat. She said, “WHAT???!!!!!” Yeah, that was the last time I talked to her. Which kind of makes me nervous…. My heart is changing. I don’t know why. I don’t know how. Maybe I am growing up. I spent a week watching as every one’s kids had a ball at Disney. And sure, there were plenty of moments that Jack really loved. However, there were many moments of “oh my gosh whose idea was it to do this?” (um…oops) This whole thing has taken a toll on us. We chose private adoption because we were too selfish to want a special needs child. It’s true. We didn’t want the struggle. We’re probably horrible people because of it, but it’s true. We wanted a brother or sister for Janson. We wanted the “perfect” family. When Jack was little, it was OK that he was “special” because he was little. Now that he’s big…we’re the black sheep. I mean seriously, how many people want to go out to dinner with the people who have the kid that screams and throws things during the meal? Or who wants their kid to play with mine, knowing that he’ll probably pummel them at some point? Nobody wants to work around, “oh I can’t do lunch because of therapy” or “no, we can’t take that class because they don’t take kids with feeding tubes.” At first, I was angry. I was angry at the people who thought their kids were too good. I’d see them at the mall. I’d see them at the grocery. But honestly, they are just ignorant. They don’t know what they say or do. And truth be told, if Jack was “normal”, I would be no better. My delusions of grandeur of educating the world on diversity won’t be coming true either…because, I don’t have time. Seriously, there are days when I don’t shower. If I can’t shower, I can’t take on the world. It hurts. It hurts me to see kids who are so smart and that are doing typical age-appropriate things. I feel very guilty because that’s what I wanted. I know that this could be so much worse, and that Jack is so much “better” than anyone expected…. I don’t want to be getting a hospital bed in my house. I don’t want anyone to say they know how I feel. I don’t want to hook him up to feed at 8 every night. We may have not wanted what we were handed. Who does? We’ve come a long way. Together. There are only a few things that I know for sure: I know that Jack is ours for a reason. I know that Janson will be a better person because of the change we’ve all done. I know that spending 4 hours playing with one ball is more important than any material thing. I know that saying “no” is empowering…even if it’s tough. I know that no matter what, my kids can always come to me, and I’ll be there for them. I know that I’d probably smell better if I took a shower….

Posted in Adoption, Janson, not good stuff, pictures, sad, sister | 6 Comments »

Pictures…later rather than sooner…

January 26, 2009 | Author Heather

Sebi and J before a ride

It’s tough to fight your best friend…

Does this t-shirt not say it all?

Meemaw bought him a light….

ON the boat…day 1.

Posted in husband, Jack, Janson, pictures, vacation | No Comments »

The last day of 2008!

December 31, 2008 | Author Heather

Jack’s first shot at the Train

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

Another year—gone! Holy cow! Thought I should catch up after the Christmas craziness! Christmas itself was so fun! Janson WAS on the fence regarding the actuality of Claus. In a last ditch attempt to keep her a child, I ordered the Santa Evidence Kit! Well, if this thing wasn’t amazing…it came with a ribbon to hang on the tree that says “1st place Christmas Tree Award”, a pair of Santa’s very own glasses, one of his gloves, a thank you note from Claus, and the kicker—-his DRIVER’S LICENSE! So, we strategically placed everything around and about…it was priceless! She was so upset that he dropped his license at the house! She wanted us to UPS it to the address supplied! Jack, on the other hand—was sort of overwhelmed, overtired, and downright scared of Christmas! He came downstairs and looked at the train, loved it, got on it, fell off, and hasn’t touched it since. He then opened a matchbox car—took it to the kitchen, put it in a stroller, and drove it in circles the rest of the day. He STILL has presents that he hasn’t unwrapped. He has no interest. Jackmas may last until Groundhog Day! There are a few other notes of interest, at least I think…. We’ve been assigned a case manager through our insurance. I sure hope that means they will help us out somehow! Jack needs a bed! (for newbies or those with short memory—Jack sleeps in the infant carrier next to our bed. He has to sleep sitting upright at least 30 degrees, and he feeds through the tube overnight. So, he needs a special bed with the ability to raise the head, without him being able to slide all around. We’re hoping we can get a hospital crib at some point.) Today, we went to the lung doctor—who has the personality of a rock. She changed his lung meds and added another one–she thinks that perhaps he is still aspirating. Which would be really sad. Or, she mentioned that he may be refluxing again, and that the Nissen (the surgery from last year) might have come undone. That would be the worst thing for us! So that’s where we stand. Our year had so many ups and downs….but we are blessed to be able to call Jack our son. No matter what that means. I will leave you with a funny—courtesy of Jack! So, the other day we were at Kroger. We are in the checkout line. Underneath the register part, there is a mirror. Jack and I have been working for the better part of 6 months for him to recognize himself—when I would get ready, I’d brush his teeth and have him sit on the bathroom counter and say, “where’s Momma?” and “OOOH, Look, it’s YOU!” So we’re there at the Kroger and he looks in the mirror and looks up at me and yells, “Hi, YOU!”

Posted in Adventures with Heather, hippos, Jack, pictures, pulmonologist, randomness | No Comments »

From: Us To: YOU!

December 24, 2008 | Author Heather

We wish you all the best this Christmas!

Sorry there was no Christmas letter this year…See, I am actually still working on it. I am hoping to have it sent off before Easter. (Really…I am totally not kidding)

We’re hibernating for Christmas…will spend the day with Alissa and Ella just enjoying it! Some friends from Orlando will join us for the weekend (which is sure to be an adventure…watch for pictures!).

Jack continues to cough—so much that he can’t keep any food down (thank you God for his feeding tube), but we hope that he will be feeling better soon!

We’re continually reminding the Big One that Christmas is not all about Santa and the reindeer…it’s about the birth of a baby, who was adopted, and who is our King.

Posted in Adoption, family, pictures | No Comments »