2010 To Do List

In the year 2010 I have a list of "to dos" which you could call Resolutions. Some involve me, but most involve Caleigh. Here's a small run down:

1. Get out of the house more. Experience new places. Socialize.
This goes with the fact that Caleigh isn't loving any new person she meets. Actually she isn't very happy with people she already knows either. Terrible Twos? Maybe I'm not socializing her enough? Maybe her social circle should involve more than therapists and doctors? I'm not that social anymore either. I used to be able to go go go and talk talk talk, but I have turned into a hermit. I admit it.

2. Educate those around us about Caleigh, her conditions, and all her strength.
This is simple. Instead of shaking my head, smiling and nodding every time someone says Caleigh is sleeping or makes a comment about her that isn't true; I just need to put it out there. Caleigh has cerebral palsy and Short Bowel Syndrome. I need to offer up information and look at our meetings as an educational experience. The ringer here is to stay pleasant, patient and nice while doing the educating.

3. Take Caleigh to the Zoo. Teach my daughter that Monkeys are real. They don't only come in Sock form.
4. Take Caleigh to the Aquarium. Nemo isn't the only fish in the sea and Rainbow Fish can't really give away his shinning scales.

5. Sign Caleigh up for Music Therapy. She loves music so much and definitely needs more culture in this category. The Black Eyed Peas are not considered culture in my book. Beethoven in person and on a piano would be lovely. I tried a traditional music class in '09 and didn't feel like it 'fit.' So hopefully I can find something that will work.

6. Take Caleigh to outdoor summer musicals. Eric and I used to attend several of these on the beach when we lived in Florida. They are a wonderful chance for family time outdoors and are generally free. Our town recently opened a pavilion downtown and that brings opportunity.

7. Take Caleigh to the beach.....a real beach.

8. Get rid of the "Old Lady" smell that seems to still be permeating our new house. Any non-chemical advice on this one would be greatly appreciated.

9. Paint all the rooms in our new house with No VOC paint. Gotta think about Caleigh's little lungs.

10. Plant new trees and shrubs. Make a new garden area with a smaller (then previous) compost pile.

11. Have at least one dinner party. Martha Stewart style. I've never had an official dinner party and it sounds like a lot of fun. Themes. Decorations. Now that we have the room, why not?

12. Make the decision if we should send Caleigh to school (PPCD) in August when she turns 3. I'm dreading this one. It makes my heart hurt just thinking about it. {Reference #1....Reference #1}

13. Look into 'help' with Caleigh. That might include a nurse or just a babysitter that is able to handle her needs. Lord knows that Eric and I need a guilt free long night out every now and then.

14. Get to work on our Will and a Special Needs Trust for Caleigh. Important stuff that we don't need to be putting off.

15. Pay off those stupid college loans. Almost there, but ugh.

16. Sign up and take Caleigh to the 3 week intensive summer physical therapy sessions in Houston. 5 days a week, 3 hours a day of PT. I think she is ready.

17. Get back into Photography. Make time for it. I've got a college degree (see #15) in Fine Art Photography and I really need to be putting that to use. I've done jobs here and there since Caleigh was born, but I really do want to get back into it. Photographer, Photoshop Artist whatever capacity I would love to regroup. I also need to find a venue to sell my art. Online or brick & mortar, it doesn't matter. It just needs to be done.

18. The ever so popular "loss weight" resolution. I fit into a pair of pre-Caleigh jeans today. I'm not going to lie...they are tight, but it felt good. So I think I'm just going to resolve to eat healthier and be more active. No worries.

19. Enjoy 2010, worry less, stress less, have less guilt and smile more.

20. ~~~~~HAPPY NEW YEAR~~~~~

CrawlAbout Crawler

I've been meaning to post this video for a long time. Actually this is from November of this year. Our old house. With the old floor.

After we bought the red tummy scooter, I knew we needed this crawler. I tried to borrow one from everybody possible. A try before you buy scenario. After a few months with no luck I went looking for funding. I found it with our local DARS (Department of Assistive & Rehabilitative Services) group. At $500 bucks we were really glad that the funding was there.

You can read more about the CrawlAbout Crawler here.

Caleigh does amazingly well in the crawler. It helps her move on her own. She has great hand and leg sequencing. We have to remind her with prompts, but she knows what to do. She gets excited and her tone takes over. She also likes to do what we call the superman. This is where she gets so excited both arms and legs hover in the air. It's pretty cute. We try to put her in the crawler twice a day.

This is a long video, but you really get to see how well she does in it. Enjoy!

Christmas with Caleigh

I had a wonderful birthday on Christmas Eve. My wish of staying home and hanging out with my family became a reality with a little bonus snow storm. I'm not a huge fan of snow or cold, but it was nice to watch from the comfort of the heated indoors. The news said that it had only snowed 6 times on x-mas eve in the last 111 years. We got about 3 inches. I know I hadn't seen anything like that.


The wind was blowing the snow like crazy and there was mention of a blizzard. I'm pretty sure it wasn't a blizzard and my northern friends can probably attest to that, but in North Texas when it snows everyone gets excited...very excited.

On Christmas Eve, I started thinking about the traditions that I grew up with and how I wanted to start our own Christmas traditions with Caleigh. I did come up with a few things. One being milk and cookies for Santa and the other was reading Twas the Night Before Christmas.

We also watched The Elf {my fav} and A Christmas Story. We also read a childrens version of Jesus' birth. Those are pretty basic Christmas Eve situations. I probably should have started thinking about a week earlier. I think that was a good start though. Hopefully next year we won't be scared to take Caleigh to Christmas Eve services because I would like to add that to our tradition too.

The next morning we got the added bonus of waking up to a White Christmas. Which was honestly fun and such a wonderful memory for Caleigh and our first Christmas in our new house.

Caleigh woke up at 6am which is about an hour and a half earlier than usual. We started opening presents. Caleigh seemed interested, but not really understanding with the whole process.

She's only 2 and just like last year we probably got more joy out of it than she did. The wrapping paper was a big hit which is a pretty normal response. I do think she is definitely more aware of Christmas though.

We finished up with presents. Made some coffee for Daddy and tea for Mommy and then proceeded to get all bundled up to head outside.

Since we live in North Texas and really only see snow once or twice a year we generally don't go out and buy the latest snow bunny fashions. So you will have to enjoy our thrown together winter looks that mostly involve pajamas.

Caleigh didn't really like the cold at 7:30am so in most of these pictures she looks pretty disgusted with the situation, but Eric and I had fun for the 10 minutes we were outside.

We waited around until about noon to head out to the grandparent's house. The bridges were all pretty icy and there were tons of cars wrecked and broken down from the the snow storm and ice. So Eric drove really slow and we arrived safely.

Unfortunately, Caleigh refused to take a nap all day so she was pretty cranky. We pretty much held her the rest of the afternoon. I also didn't take the camera out of my bag to catch more present opening. Between Mimi & Pop and Grammi & Grandpa, Caleigh hit the toy land jackpot. Good thing we got a bigger house.....we'll really need it now!

So that about sums up Christmas with Caleigh 2009.

Merry Christmas. We hope everyone had a wonderful and blessed day. I know we did!

28

Today I am one year older. One year with more experience. 28 years old.

I had actually forgotten about my birthday until about 3:30 yesterday afternoon. When your birthday is the day before Christmas it tends to be put on the back burner. I'm fine with that. I'm not much of a birthday party kinda girl. I'm sure years of holiday sharing did that to me. Although back in my elementary school days I secretly wanted a summer birthday. Pool parties, warm afternoons and kids actually in town to come to my party.

So what did I do? I had my daughter in the summer. Not by choice, but still a nice little perk to her prematurity. Summer Birthdays.

I don't have any big plans for the big day. I'm hoping to get a nice, quiet, long, hot shower. The type of shower you step out of beet red and squeaky clean. Maybe unpack a box or two. Maybe a nap. Mostly, I want to spend the day relaxing in our new house with the best hubby ever and the most beautiful little girl in the world.

Here's to another year!

Christmas {Last Year}

I never posted any pictures from Caleigh's first Christmas at home. Circa 2008. I know, I promised them, but I never got around to it. I still haven't posted Caleigh's 2nd year slide show either. I guess life just gets in the way. Huh, go figure?

So here's some chunky cheek photos to ooohhh and ahhh over. I forgot how much the TPN that Caleigh was on made her look so swollen. In an absolutely adorable way of course!
Love those cheeks.
Last year she didn't know what was going on. This year, maybe she does. Who knows? Caleigh definitely knows a lot more and in general she is very aware of her surroundings. Plus the amount of Christmas music, movies, books and Santa talk have got to help.
I can't wait until Christmas morning. It gets more special every year.

Home Sweet Home

With a lot of help by family and friends we are now all moved into our new home. There's stuff everywhere. Boxes Everywhere. There is no way I can park in the garage. But you know what?

I don't care.

We have the Christmas tree up (with Mimi's help) and we are IN our home before Christmas. There will be months and years to unpack, paint, decorate and organize. No worries.

I love the house. I'm excited about the house. But it doesn't quite feel like home yet. I'm missing the feeling of our old home and everything we put into it. Currently, I feel like I'm squatting at my grandparents house. {Photos are coming..... Wait till you see the wallpaper!} I'm on the 3rd day and already feeling a little bit more comfortable here. I'm sure after awhile it will feel like our home.

A huge THANK YOU to everyone who helped us get settled in. We couldn't have done it without you....

Apriso {for children}

Yesterday, I took Caleigh to the GI doctor. She still has blood in her stool. Even after 2 rounds of antibiotics. The cause: Colitis

When we did the endoscope and colonoscopy back in June it showed colitis, or inflamed intestines. Colitis explains the blood in the stool and the bacterial overgrowth that isn't backing down or may not even be there. We may be treating for BO when it's actually just severe colitis.

So the new plan for Caleigh, GI wise, is to stop the Nexium (antacid) by doing a slow wean. Reflux meds are known to cause bacterial overgrowth. Plus Caleigh has been on them since birth and I'm not sure if it is even helping anymore. By doing a slow wean you don't get the surge of stomach acid that happens if you go cold turkey. I'm ok with this. Our insurance was going to stop covering the Nexium in January anyways. I'm not a big fan of antacids. If your interested in a semi-hard to read book about the hate of antacids try reading: Why Stomach Acid is Good for You. It has lots of good ideas and makes tons of sense.

The next step is to start Apriso which is a mesalamine. It is considered a topical for the intestines. It coats and soothes the lining to help heal the inflammation. I attempted a google search for use with children and couldn't find a thing. We are doing a smaller dose than the adult version. Here's the clincher.....It has to be taken by mouth. Apriso is a capsule with teeny tiny balls of time release goodness. It has to be giving by mouth so that it releases in the intestines and not the stomach. So last night Caleigh had her first dose mixed in with a tiny bit of sweet potato and fed to her by my finger. This was the first bite of food in the last 3 weeks. If I feed her with my finger she doesn't retch or gag. If there is a spoon involved it doesn't work out. So I've gotten two doses in without problems. Apriso is usually given long term to heal the damage. I've read that most feel better within the first week of taking it though. We are looking at 6 months or more of this med to fully heal the colitis. Praying this works.

We had labs drawn awhile back. Some for GI and some for Endo. Caleigh's zinc was low this time so we are having to add a supplement for that as well. We already give a vitamin D supplement and when we go to endo next week, we will get the results of her D level. She seems to be having the typical Short Bowel Syndrome mineral and nutrient malabsorption.

It was an eventful GI appointment to say the least. Never a dull moment. Never status quo.

~~~~~~~~~~~~~~~~~~

The House.

I'm pretty sure I wrote "So the next time I update the world about Caleigh it will be from our new home. I can't wait....."

Well, that didn't happen. We sold our home yesterday and we are now in a waiting pattern for the closing of our new home. So in a way we are 'homeless' but we don't have to be out until Tuesday at midnight. There's about a 2% chance that we will close extremely late this Friday afternoon. Most likely we will close on Monday. We had gobs of people lined up to help us move tomorrow. Looks like it won't happen. Everyone has to go back to work on Monday so our help diminishes dramatically. Everything is packed and ready to go. So hopefully it won't be too hard. There is also a slight chance that the owner of the new home will let us move everything into the garage tomorrow before we close, but I'm not sure that will go through either. Everything depends on what happens today. So we sit here twiddling our thumbs.

FYI, I'm a control freak {Thanks Mom}. Controlling, or at least trying my hardest to control things is what I do. This is definitely not kosher with my thought process. I'm not as bad as I used to be in this department. Caleigh spiced that up for me. Old Holly would be having panic attacks and breathing problems at this point. New Holly just shrugs her shoulders and takes it in stride, sorta. Hmmm.....I think I just typed in third person....scary.

I'll try to update again or Twitter {yes, I'm trying that again} about the house situation throughout the weekend.

Don't forget to go over to my Review Blog for a chance to win $200 from LOFT.

Things just Keep Lining Up

As if things couldn't fall into place any better than they already have; I have been asked by BlogHer to be a Product Reviewer. I am so extremely excited to jump start this path. I've been working on my first review and it was tons of fun.

You can check it out, and show me some Reviewing Love. Plus you can enter to win a gift card worth $200 from Loft! Yes you can....Yippee!

Click Below:

Tomorrow

As I type this it is 5:30am. Eric was up getting ready for work and I just couldn't go back to sleep. There's just TO much going on in my head! So I decided to do a quick update for everyone.

Caleigh's doing better than last week. We started Flagyl on Wednesday and it is helping. Her diarrhea has slowed down and her belly is getting smaller by the day. I'm hoping we don't get any of the yeast issues that usually appear after a round of Flagyl. She still isn't 100% but she is tolerating more activity and therapies than last week. I've noticed that her eyes have become more crossed since she hasn't been feeling well. They were pretty straight before the chicken incident. We still aren't giving any foods by button or by mouth. Caleigh will take her sippy cup with water in it. She doesn't get much, but actually tries to bring it to her mouth. I'm extremely happy that she is still liking that. I'm hoping Caleigh stays well during the whole moving process. She is up to 18 1/2 hours of continuous feeds at this point. We have a follow up GI appointment on Thursday.

The House. All is good to go with us closing and selling our house tomorrow morning. Once closing is final on our house the paperwork for the new house can be finished up and we are hoping to close on it at least by Friday. With the big move date being Saturday. I'm hoping that all works out. Best laid plans......etc. Eric, Caleigh, KoKo and I took a break from packing yesterday and drove up to the new house. The new roof is done and it was fun to peek in all the windows and 'picture' how things will be and where things will go. Our house is full of boxes and we are just about finished packing all that we can. We finished up the kitchen last night and that was the last BIG thing to pack up. While Caleigh was napping on Sunday, we unloaded the attic and started piling things in the garage. I found stuff that I forgot we had which is kinda fun, but there wasn't much time for nostalgia. Maybe I can squeeze that in with the unpacking?

We've never moved with a child before so things should be interesting. In the almost 9 years of marriage, Eric and I have moved 7 or 8 times {I've lost count}. I'm the type to pack months ahead of time and then the moment we are in the new place everything must be set up immediately. I would stay up all hours of the night unpacking, cleaning and arranging until everything was perfect. I'm pretty sure those days are long gone. My priorities have SO changed. Taking care of Caleigh is #1 now. Sleep is #2. So instead of the 48 hour unpackathon. It will probably take me weeks and I don't care. I love doing that kind of stuff.

So the next time I update the world about Caleigh it will be from our new home. I can't wait.....

p.s. Check back in a few days for the intro to a new project I've been working on

Let it Snow Let it Snow Let it Snow

This morning it snowed big fluffy flakes of goodness. This came out of left field for me. I didn't know it was supposed to snow and honestly the weather people around here usually get it all wrong. Who knew? Snow in North Texas without ice? This totally goes along with the whole El Nino thing. Oh well, as pretty as it might have been I still don't like the cold.

We here at the Gray household have been staying busy with all things House related. I think my hair is turning more grey by the minute. Today we had the inspection on our house and I am patiently {pacing the floors} waiting for the results. Closing date is still scheduled for next Wed. the 9th. We have until Sunday the 13th at midnight to move. So somewhere between the 9th and the 12th we need to close on our new home. We are still waiting on the roof details for our home to be. Most of everything is packed and now I just twiddle my thumbs waiting on all the details to evolve. I can't sleep. I toss and turn. Covers on, covers off, socks on, socks off, check on Caleigh, check email, toss, turn..... It's getting ridiculous. 7 days, 7days...

Caleigh still isn't doing great either which adds to the stress. Her belly is large and distended and this morning she started stooling again. I turned off feeds, gave Imodium and started pedialyte. The usual cocktail to keep her hydrated and alert. Tomorrow is the last day for the Xifaxin antibiotic. So we may have to start something else to get rid of the bacterial overgrowth. She was doing better for 3 or 4 days and then everything went down hill again. We haven't given Caleigh any 'real' food in over a week and her skin is amazingly clear. Her face isn't rashy at all. Could it be that Caleigh can't handle real food? Eric reminded me that there could be worse things. Remember that little thing called a central line and TPN? I need to remember that more often.

This morning Kendall was nice enough to let Caleigh come over and play while the house inspection was going on. I love the look on the girl's faces. Can't you just see the dialogue there?

They are getting SO big. It's great to see the girls grow up together....