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!
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!
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!
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!
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.