Wednesday, December 22, 2010

Ortho Visit

Chloe's orthopedic consult went great today. They took an x-ray of her hips and they look fine. Also, he did NOT see any leg length difference as his therapist thought. She does have internal tibial torsion (where the tibia bone, one of the lower leg bones, rotates in causing "in-toeing"). You can see it best when she's sitting in my lap with her knees straight on - her feet turn WAY in. My son had it and outgrew it no problem, but because Chloe has such lax joints and ligaments we'll watch it to make sure it doesn't negatively impact her walking and cause her to trip. The only correction for it is surgery, but at this point we're just going to watch it. We don't have to return for another few years. Yay! I couldn't handle another surgery right now. One thing at a time, please. ;)

Okay, Sadie's crying and Xander's yelling at her and my niece Macy is trying to negotiate LOL. Off I go. . .

Tuesday, December 21, 2010

Another Surgery for Chloe

We saw the eye doc today and they should be calling me tomorrow to schedule eye surgery for Chloe some Friday in January. He said it's really not a big deal for the children (haa haa - I love how he always says that "it's not a big deal FOR THE CHILDREN". As if the parents are a whole other deal!)

Tomorrow we go to orthopedics to check her out and get a baseline. She has signficant in-toeing of her left foot and her PT thinks her left leg is shorter then her right. We'll see what they think tomorrow. I don't know why I'm nervous about this appointment. I was nervous today too. I know the surgery is no big deal, but I'm feeling some anxiety about it. I'm sure everything will work out fine. Just another surgery to put under her belt. She's my little fighter.

Will keep you posted on tomorrow's appointment. :) If you haven't seen the video of her walking and talking, check out the previous post here.

Fun with Chloe!

Monday, December 13, 2010

Me and My BIG Mouth!

Yup, me and my big mouth announced that Chloe's been doing GREAT wearing her eye patches and WHAM! That's the end of that!!!!

Yup, she threw it on the floor!

BUT the good news is, she's feeding herself!!!!!!!!!!!!!!!!!!!!

So life is still good! :)

Yes indeed, life is good.

Tuesday, December 7, 2010

Chloe update

Sorry it's been awhile since I've updated. Getting busy with the holiday season. Chloe's had a nasty cold for about 2 weeks now. She's been in great spirits and even kept her appetite up (usually the first thing to go with her), aside from not being able to drink because of her stuffy nose! Last week Xander and Stacey were both diagnosed with strep throat and even though toddlers are much less likely to get strep, I thought I should take her in yesterday since she just didn't seem to be kicking this cold. I wanted to make sure nothing else was going on. Sure enough, doc took one look at her throat and said "I'm swabbing it!". He still didn't think it was strep because other than the way it looked, she wasn't showing symptoms of strep. But the 5 minute test came back positive, so we're treating her with antibiotics now. Hopefully it'll kill any sinus infection she might have too. So now 3 out of 5 of us are on antibiotics! I'm happy to say, it's been a mild infection for each of them. I'm just so thankful that Chloe's been able to fight this off like she has, almost like nothing's going on. So many of our Ds kiddos are sick right now. I mean like REALLY sick. I read on Facebook and other blogs about ER trips and admissions and even life support, and I am incredibly thankful that Chloe has remained so strong. My thoughts and prayers are with those kids and family that are not so lucky.

On a more upbeat note, Chloe's doing GREAT with her eye patches! She wears them everyday without fail. She's so cute with them on too. She only has to wear one for an hour each day, so it's really no big deal. The glasses on the other hand, are a completely different deal! Too bad she doesn't have to wear the patches all the time and the glasses for only an hour! Oh well!

Wednesday, December 1, 2010

Happy Holidays

Happy Thanksgiving from our family to yours! Enjoy the holiday season!

Sunday, November 21, 2010

Eye Patch and Glasses

Chloe is doing pretty well with her eye patching. She has to wear them on alternating eyes for 1 hour each day. First day she ripped it off several times and I had to stay right on top of her. Second day I missed (oops). Third day was much better and the fourth day was great!!!! So she seems to be getting used to it. Hopefully by wearing the patches her eyes will strengthen possibly eliminating the need for surgery in January. Then there's the glasses. That's a completely different story. She will put them on, but won't leave them on. We work with her a little each day to get her to wear them. We're taking baby steps, although she only needs them for a month, so we don't have too much time to get her to wear them!!!! They have prisms on them to help her see better since her eyes don't align, but it could also potentially make her turn worse, which if she needs surgery is a GOOD thing because they want the turn to be the worst it can be so that they correct the whole thing and decrease the chance of repeat surgery.
Finally, I've put Chloe back in her leg braces. We'll wait to see if she needs new ones, but for now I'm going to continue to use the ones she has. Why not, right? Better then using nothing. She is walking ALL OVER the house now with her push toys. She uses that mode of transportation more then crawling now. Yay Chloe! Hopefully soon she'll drop the "walker" and do some independant walking.

Tuesday, November 16, 2010

Rolling with the Punches

Chloe continues to keep me busy with the "little things" going on in her life! First things first - her g-tube site closed up nicely after a brief, minor infection after the closure surgery. A little oral antibiotics (and lots of positive thoughts and prayers) and she was good to go! At her post-op appointment the other day the doc was talking to me about what it would look like once the scab fell off and Chloe must have heard her because she popped that little sucker right off! (Sorry, I know, GROSS!) But that gave the doc a chance to look at it and explain to me what we were looking at (a little pink skin with one tiny little opening remaining - which I believe has even closed already after only a day). Chloe is also continuing to eat like a CHAMP. I can't hardly believe how much she's improved. Oh, and we ran into one of her old cardiac docs (he was a Fellow) from when she was mega sick girl and he was SOOOOO impressed. He couldn't get over how great she looks even with a terrible cold (yes, she has a terrible cold!). He said it was such a moral boost for him to see her looking so good. :) You go on about yourself big girl!!!!

Okay, onto the latest drama. First, her foot and now feet are turning in fairly significantly. We stopped using her braces because she was looking so good, but now her feet are turning in so much that her therapist is concerned it's going to affect her bone growth. So back to braces. Booo. I have to be honest, I hate them. I mean, I don't really HATE them, but the pressure to remember to put them on and take them off for varying times each day is a lot to keep up with. I know, that sounds totally LAME. But somethings it's just hard to be consistent and that's what she needs! And while I'm complaining, she needs new ones, so that's MORE MONEY we have to spend (we had a huge deductible for her surgery so we're also dealing with that - argh). Okay, that's it for complaining because putting it all in perspective things could be much worse and the honest truth is she truly "has her health". So what are some stupid braces. They're a great excuse to wear those adorable leg warmers Baby Legs! LOL

Finally, we had Chloe's eye appointment today. Her eye turn has indeed gotten worse and she will most likely require surgery within 4 months from when it started. Soooo, we'll see the doc again in 4 weeks, but in the meantime he wants us to try #1) patching her eyes alternating days for 1 hour a day and #2) getting her to wear prism glasses. (more money, more money, more money - hee hee, just kidding). So she's getting these adorable little glasses, just like Sweet Pea has and will likely rip them off her face every chance she can, but we're going to give it our best effort. It's one month and hopefully by then we'll see some improvement. If not we can expect surgery in early January.

So I think that about does it. She's got this nasty cold which I can't believe she's fought like she has. No fever. No rashes. No drama. Just a REALLY nasty nose and a little bit of a cough. Hey we can handle that and everything else. I was thinking to myself how different things are with Ms. Chloe. Everything we've already been through with her. When these "little things" come up it's like no big deal, but I know if ANY of these things had happened with my older two kids it would have been high drama! I would have been so scared and freaked out. We've certainly learned to roll with the punches!

Saturday, November 13, 2010

Yes, We Actually DO Play in the Leaves in the NorthEast

My friend Holly recently asked me if we actually pile up the leaves in the fall and jump and play in them. We sure do!!! It was in the 60's today and GORGEOUS! The kids, parents and dog all had a blast! Hope you enjoy the pics! (Chloe's got a bad cold, but still thoroughly enjoyed herself!)

Friday, November 5, 2010

Like Old Friends

Ya know when you meet someone and it's like you've been friends forever? It's just natural and you just connect? Well, I met the coolest chick today! Her name is Holly and she resides over at Holly's House. If you haven't checked out her blog yet, I highly recommend you do! She leaves me in stitches every time! She's real life. Anyway, we met via our blogs and have become virtual friends and today we finally got to meet in person for the first time. She had her 2 beautiful girls with her and I had such a wonderful time getting to know all 3 of them. Unfortunately I didn't get any pictures of her older daughter (that were in focus anyway).

Monday, November 1, 2010

G-tube Site Update

Chloe visited her pediatrician today and he removed the stitch from her closed g-tube site. It was buried under scab so it wasn't very pleasant for her, but now it's done and if the stitch was causing some of the irritation, hopefully that'll resolve now. She's also started an antibiotic because her doc thinks she has a superficial infection. We expect the redness to clear up in a few days with the antibiotic, but we marked where the redness is so we can tell if it spreads. I'll obviously be watching her closely. Thanks to everyone for the thoughts and prayers. I think she's going to be just fine. :)

Sunday, October 31, 2010

Halloween Pics as Promised!

That's our Super Girl!!!

Pizza face!

A Little Something Extra

It appears as though sweet Chloe might have a little complication from her surgery. As it looks now, we think her g-tube site is now infected. I've spoken to the on-call surgeon twice this weekend and although it's red and swollen, in the absence of fever, pain and/or discharge, he thinks it can wait until tomorrow to have her seen. Considering it's Sunday AND Halloween I'm trying to avoid an unnecessary trip to the ER. Here's a pic of her site (sorry for the graffic nature of the picture). I'll post Halloween pics later. . .

Wednesday, October 27, 2010

Surgery is a SUCESS!!!!

Chloe's surgery was a success! The hardest part was getting her IV line in. Thank goodness she was asleep for it!!! She is nice and bruised up, but aside from that and the bandage covering her "wound", you'd never even know she had surgery 2 days ago! I, unfortunately, got the stomach bug and had to go home, leaving Nana to care for Chloe overnight. She did a GREAT job! The big kids were home with Grandma Linda in from Montanta and cousin Miah in from North Dakota. They were having a great time even though they were worried. And although it didn't go quite as planned, it all worked out in the end, and the most important thing is that Chloe came through it all with flying colors. Here are some pre-surgery and post-surgery pics!

Thursday, October 21, 2010

Surgery a "go-go"

Assuming our little peanut stays healthy, she will have her g-tube closure procedure on Monday, 10/25. We won't know the time until tomorrow afternoon. Keep her in your thoughts and prayers. The site has been fairly dry, with only occasional "oozing" so I thought they might not want to close it, but they do, so that's good. It means we'll finally be able to put this behind us and they'll get rid of the extra skin that grew that I'm sure she would hate as she got older (besides, she plays with it!). They'll also clean out her ears and check to see if it looks like she needs tubes. One stop shopping!

I'll post the time when we have it so all positive thoughts and prayers can be focused around that time. Thanks!

Sunday, October 17, 2010

We have a DATE for surgery

October 25th is the date for surgery to close Chloe's g-tube site. She will have her g-tube hole closed, the extra skin removed and her ears cleaned and checked more closely for fluid (and get tubes if needed). This is all assuming she's stays cold-free (I think I saw a runny nose today - aaaaarrrrgggghhhh!!!) So let's hope she stays healthy so we can get this done. AND Stacey's mom and niece Miah are coming so it would be great to get it done while they're here to help. So some finger crossing would be great!

Also, yesterday was our local buddy walk. (Pictures to follow.) Chloe's Crew was the 5th highest fundraiser with over $6500 in donations!!!! We want to thank everyone who participated - everyone who walked, donated and made the walk happen. Although it was freezing with the whipping wind, we had a wonderful day and were incredibly touched by all those that chose to support Chloe's Crew.

Friday, October 15, 2010

A Fitting Tribute to a Monumental Anniversary

I thought it fitting to re-post Chloe's video about her first year on today, the anniversary of her heart surgery. It was 2 years ago today that Chloe was literally saved from death. It is a miracle day. Hope you enjoy a little walk down memory lane, including her surgery.

Friday, October 8, 2010

Sweating it Out - Lab Results

So the doc calls and leaves me a message saying to call him back that he just wants to touch base with me briefly on Chloe's labs. He says it's okay to have him interrupted. So I call back and he's finishing up with a client so I agree that he can call me back. I KNOW that there is NOTHING wrong, but yet I sit here sweating. The receptionist wasn't even aware he called me, so I KNOW it's nothing serious, but yet I sweat. You know that feeling? That feeling that everything MUST be fine. That you're simply having some crazy reaction. Some sweaty, I'm going to be so relieved when I talk to him and he tells me all is well, reaction. The I know nothings wrong, but I need to HEAR it so I can STOP SWEATING reaction! Well, he FINALLY called me back several hours (and an Ativan) later to let me know that the labs all looked good (see, I KNEW they'd be okay), but that her TSH (Thyroid Stimulating Hormone) was a little elevated (meaning she's a LITTLE underactive). It's NO big deal, but could explain the "unexplained" fatigue. We'll need to wait to hear from her endocrinologist (GREAT that usually only takes about a week!). But the good news here is NO scary thing lurking in her blood. She's all good minus a little thyroid tweeking that needs to be done (oh, and yes, surgery on her g-tube and possibly tubes in her ears and possibly surgery on her eye. . . but that's NOTHING compared to what my crazy mind was conjuring!) It's all good!!!! :)

Thursday, October 7, 2010

From the words of a big brother and sister

"Moving was hard, but it was really hard for Chloe in her first 9-weeks-of life. I only hope the best for all the kids with Down syndrome. Especially those that are new-to-life." by Xander

"I love Chloe. I will kiss Chloe. Her g-tube fell out. That's the end." by Sadie

Plum Tuckered Out

This is Chloe after her appointment with surgery today. So we have a plan. . . sort of. It involves some waiting and some what ifs and some more waiting, but still, there's a plan.

Since the g-tube site is not really leaking too much we have the choice of waiting awhile longer to see if it will close on its own, or going ahead. I'd just assume get this taken care of so we can get on with life as usual. But she's just had a cold, so we have to wait at least 2 weeks since her cold to make sure she's good to go. She had labs done today (hence the adorable doll in Chloe's sleeping arms given to her by the phlebotomist) so we also have to wait for those to come back since she's been having fatigue. The surgeon also wants to talk to Chloe's cardiologist to make sure she doesn't have any objections (which we doubt). Then the last piece to this ever so complicated puzzle, is ENT. As I said yesterday the doc wants to get in while she's under and clean things out and investigate further whether or not she'll need tubes. He's also getting back to me on whether or not we need a sedated hearing test, which would complicate matters (scheduling anyway) even further. But I have no worries. I expect it to all fall into place.

The procedure takes about 30 minutes, followed by about 10 minutes for the ENT and then another 45 minutes for the sedated hearing test, if that's necessary. So about and hour and a half total if they do everything. I'm not even going to worry about her eyes right now. We'll deal with that in November. I'm not sure it's the type of thing they'd do surgery on soon or it's really something more down the line. And I think they do it right in the docs office. Should be no big deal.

That about does it for the update. Hopefully I won't have much more to report over the next week or so except that her blood work came back great and that we all got coordinated and have a surgery date! Otherwise I expect things to be quiet!

Wednesday, October 6, 2010

ENT Update

Just wanted to show off this adorable outfit my aunts got for her that she FINALLY grew into. Isn't it just the cutest???!!!
Now for the update. We saw her ENT yesterday and he was actually pleased with what he saw. He really didn't see significant fluid when he looked and he's still inclined to wait on putting tubes in. He doesn't feel that the tests that show the presence of fluid are that accurate in children with Down syndrome because of the make-up of their ears, so he prefers that we wait. He DID, however, want to "get in on it" if surgery is going to be putting her under for the g-tube closure. At the very least he would like to get in there and clean them out and get a good look at them and then if he feels it is necessary at the time, put tubes in. The other question on the table is if she IS put under, should the newborn screening test be done because a) we're not sure if it was done originally and b) they may want new results and if she's going to be having a procedure done, now may be the time to do it. Sooooo, we go to surgery tomorrow and find out if they are going to indeed schedule a closure (which I'm not sure about since she hasn't leaked for several days now) and then we shoot for one-stop-shopping and try to get all this done at once! I'm feeling a little like there are a lot of balls in the air right now, but everything DOES seem to be falling into place.
Oh, and I finally talked to her endorinologist who said she doesn't think she needs to be switched off the generic (should have argued for it, but didn't) and agreed we could order more labs. So after her surgery appointment tomorrow we will go for a blood draw for the thyroid screen and CBC. I expect everything to come back normal as the fatigue seems to be going away. Maybe she just had a virus, or as my mom suggested, is sensing all of our stress in the house (having just moved and not being able to sell our old house, etc., etc.). I also got her an appointment with her eye doc as her eye (and maybe eyeS) is turning in more. Now I'm sorta wondering if they can do THAT while she's under too. . . hmmmmm.
okay, I'll try to update tomorrow.