Bracelets

Special Video

Look for Chloe in this very special video!!!!


Photo and video editing at www.OneTrueMedia.com

Rough Evening

Well, Chloe may we working on her first tooth. I can't find any evidence IN her mouth, aside from all the drooling. She also had a really tough patch last night of screaming, crying (choking and gagging) with a low grade temp that seemed to get worse when she sucked on her binkie and was soothed by a teething ring. So far so good today, and I haven't discounted her ears, but for now I think it's teeth... (By the way, I think her hearing has gotten better since the wax was cleaned out).

We ventured out for fireworks last night. The big kids enjoyed them, but Chloe, not so much! I think the poor financial crisis in this country led to more of the less expensive boomers, which meant LOTS of loud explosions in succession, which for Chloe was beyond terrifying. My husband huddled with her in the truck, but that didn't seem to help. And as if the 1/2 hour of dramatic crying earlier in the evening wasn't enough. Poor baby! Thankfully, she's fully recovered today!

We spent yesterday moving the big kids into their "new room" now that our friends have moved out. We've been setting up Chloe's room too. As of late the big kids have been sleeping with me in my room (in my bed) and my husband has been sleeping with Chloe in what WAS the big kids' room. But last night the big kids slept in their "new" beds, Stacey still slept with Chloe, but I got the big KING bed all to myself. Ahhhhh. It was sooooo nice. Next step is get back into the same bed as my husband. LOL I'll post pictures of the rooms when they're all done. :)

Sleep Study

Asleep, snuggled up in her special Jaxson's Blanket for Babes (it was really dark but the flash made it look light).

The next morning ready to get all that stuff off her head, but still in good spirits!

The sleep study went fine. Well, fine in the sense that she went ALL night without her CPAP mask on. They decided to use the night as a baseline and the tech "unofficially" said she did really well and her naked eye never saw her sats go below 91!!!! WOW! Back in Dec 08 she went down to 69. That's pretty darn low. She had some apnea events but I think they were mainly "central" (brain related) as opposed to obstructive (self explanatory), and seemed to be mild (when watched to the naked eye). So we're hopeful that we might actually be done with the CPAP machine. How exciting would that be???? (CPAP = Continuous Positive Airway Pressure). It ususally takes 2-3 weeks to get the official results, but our doc said he'd do his best to have results to us in time for our trip end of next week, so we know if we need to take the CPAP with us.

From the pictures, however, I'm sure you can imagine she didn't exactly sleep well. In fact she slept horribly, tossing and kicking her feet, reaching for the wires. This went on every 10-45 minutes so I got little to no sleep. I was exhausted. But all is well that ends well, right? ;)

The latest

Well, we're off to Chloe's sleep study tonight at the hospital. We'll be there from 7a-7p. We still haven't made a final decision on who will go with her - me or daddy. I had elected daddy, but now that it's tonight I think I want to be there with her!

PT today went quite well. As with all her therapists, she was quite impressed. She is pretty confident Chloe will need orthodics (aka braces) for her ankles and lower legs to assist with standing. Although she's been baring weight on her legs, she does lock her knees in place because they aren't strong enough to hold her. So she'll make a final decision next month.

Hearing seems to be better since the wax was cleaned out and her mucus seems to be diminishing. We'll go through with the hearing test, because she hasn't had one, but hopefully it will reveal that all is well. ;) We can hope. . .

She had another doc appt and weighed in at 15lbs 11oz. (up from about 15lbs 7.5oz last month). This is the time they slow down so he said she's still fine on her curve, but wanted us to add back in the 2 ounces we had taken out. I'm going to try rice milk mixed with rice cereal first to see if she'll gain enough on that. She looks great if you ask me. As long as we monitor her I think it should be fine. Not being able to "feed" your baby via the mouth just doesn't get any easier. I still long to give her a bottle instead of having to feed her through her g-tube. To hold her and snuggle her as she sucks on her bottle gazing into my eyes. I know, we have to make those moments happen anyway, but it's not quite the same as when you're nourishing your baby at the same time. And although I don't mind the tube feedings while she's asleep they are REALLY a pain when she's awake and active during the day.

Make sure you check out the picture below so you can see just how great she looks! It's amazing. I'm excited, but holding my breath at the same time. . . She's my little rock star!

All Packed and Ready to Go

Our friends Ali and Kait are moving out, (they've been with us for a 1 1/2 years) and they tried to pack up our sweet little Chloe!!!! She doesn't seem to mind. She will sure miss them!!!! (we all will!)

Treat for Mommy

Okay, so mommy and the big kids got a little treat today - new HAIR cuts!!! Now this is such a treat because we've (I've) really been overwhelmed with things lately and haven't gotten us in for hair cuts in a really long time. I feel like my "old self" again. :)

Before. . .


After (sorry, we're in our jams! LOL)

Not great of me, but I wanted to show off my handsome man! :)

More pics!

Chloe standing. This was her last attempt and she was getting tired. She had been standing straighter and more on her own, but this was still a good attempt. You go girl!!!!
















Baring weight on her arms (fully) WITH rotation. ;) woooo hooooo This picture is for Patty her OT! That's her PT working with her, but her OT comes every week. I knew she'd be so proud!







Xander's "Chloe scar". We weren't sure what to say about that one since he wrote on himself with pen. So we took a breath and each gave him a hug and a kiss.

















Chloe just loves book time before bed! :)

















Sadie and Chloe enjoy some playtime together.


















Xander and Chloe sharing a snuggly moment.










Snoozing while holding on to her g-tube. ;)

SUCCESS!!!!

Chloe picked up a Gerber puff off of her tray, put it in her mouth and ate it!!!!!!!!!!!!!!!!!!!!!! First time tonight. Sooooo exciting!!!! A HUGE milestone for her. GGGGGOOOOO CCCCHHHLLLLOOOOEEEEEE!!!!!!!!! She was a little frightened by all the cheering! Hopefully that won't discourage her from doing it again!

Dare I Risk Saying Anything???

Well, she's back to her old happy self today. We had a long outing on Saturday which is unusual for her so maybe she was just tired! She's busy playing, talking, rolling over and laughing again today. Phew!

Oops

Did I speak too soon? Well, Chloe was VERY fussy this afternoon. I tried to put her down for a nap and she screamed!!! Later I vented her stomach to get any air out and the stuff that came out of her stomach made me think maybe her belly hurts. Nothing too gross, just looked a little "unsettled". She finally fell asleep at about 5:45pm and we let her sleep for 45 mins before needing to leave for a Father's Day dinner at my mom's (HAPPY FATHER'S DAY to all my favorite dad's out there!!!). She's been acting weird all night. Smiles alternating with fussing (she does NOT fuss - ever). She's been sticking out her tongue a LOT and she doesn't do that a lot either. No temp although she felt a little warm, but my thermometers are acting funny. So we'll see how things go overnight. Teeth? Ears? Tummy? Only time will tell. . .

A Healthy Girl

Boy, now that Chloe is healthy again, I am once again realizing the impact that having a cold has on her!!!! When she is healthy she just gets so strong and seems to develop in leaps and bounds, or at least as compared to the weeks when she's not feeling well. Since feeling better she has started sitting up for LONG periods nice and tall and can even reach for things and play with things. While on her belly she is getting stronger and stronger and can hold herself up now on fully extended arms (a BIG accomplishment). Occasionally she gets up on her knees or pushes with her feet to skootch just a few centimeters (LOL). She's working on going from sitting in my lap to standing at the couch and from "short" kneeling to "high" kneeling. She used to have such trouble moving her arms. The weight of gravity was just so great for her. But her movements are getting much more smooth and fluid. It's a joy to see. And at mealtime she's REALLY working hard at picking up little pieces of food (not yet with the pincer grasp and she can't yet get it in her mouth, but she is soooo close!!!!). And the smiles and laughs just keep on flowing!!!

PICS!

Our special friend Kaitlyn reads to Chloe and Sadie. Chloe LOVES books!!!! And so does her big sister!
That's what you call "plum tuckered out"!!!
First bath in the BIG tub now that she can sit up on her own!!!!! Such an exciting milestone! Her sister Sadie shared the bath with her. They had a great time together.
So happy after her bath! Fresh clean baby!
Xander and Chloe having some playtime. She sure LOVES her brother!!!!!!!!!!!!!

Indiana Chloe! :)

Eye Appt & My Turn

So Chloe's eye appt on Friday was very positive. Her nystagmus seems to have resolved itself! Her vision seems fine and her "head tilt" seemed better too (her therapists think it's a muscle thing - and she's getting stronger lately). So it was a GREAT appt. Go Chloe!!! She doesn't have to go back until she's 2!

I had my turn at the doc on Wednesday. I saw an endocrinologist to try to figure out what's going on with me (why I've been signficantly tired off and on for a few months now - to the point of being debilitating). Of course no answers for now, but in 2 weeks I'll go in for a BUNCH of labs (13 total) to see if we can get some answers. I have a very hard to regulate thyroid so hopefully she can help me manage that. We've changed some of my meds a few weeks ago and I am starting to FINALLY feel better. I still have bad days, but fewer and fewer now. I just can't be sick. I got too much going on for that!!!!

Travel Question

For those of you with children with special health care needs out there, I was wondering what, if anything, you do special when you fly with your child. We will be flying from NY to CA (about 6 hours + about 2.5 hrs in the car getting to and from the airports) the first week of July. I am VERY nervous about traveling with Ms. Chloe as I'm not sure how to manage all her equipment and what exactly we should bring (I'll discuss that with her doc too). She has her feeding pump and g-tube supplies, her meds, her cpap machine and suction machine. We'll buy diapers and formula there to cut down on that stuff. Any suggestions? As nervous as I am I am THRILLED to be getting a little respite! This was a 40th birthday present from my mom. My mom and step-dad are joining me, Stacey and the three kids and we'll be staying with my sister, her husband and my niece Macy. They live in SF area so we're really looking forward to a nice little vacation. I don't think any of my blog friends are in the SF area, right? I'd love to meet some of you!!!! :)

Thanks!!!

ENT report

Chloe was a trooper at her ENT (Ear, Nose and Throat) appt today. Her OT and I have both noticed some hearing loss (she doesn't turn her head to sounds that are out of her sight as consistently as she used to) so that was the focus of our visit. The doc cleaned out the wax (she didn't love that, as you can imagine!), and also noticed some fluid in one ear. Since she is getting over the final stages of her croup/cold he wants to give her a month to see if the fluid will resolve. Until then I will keep an eye on her to see if her hearing seems to improve any, but we are scheduled now mid-July for a basic hearing test at Yale. At that point we'll talk with the doc again and then make a decision what steps to take next, if any. If she's still showing hearing loss we will potentially go next for a sedated hearing test at which point he could actually put tubes in right then if needed. I read somewhere online that 60-80% of people with Ds have some degree of hearing loss. He said he doesn't want us to worry about it at this point. She's her usual happy self, so as long as she's happy, I'm happy.

Wednesday is my Endocrinology appt so hopefully we'll get some answers for ME! And Friday is Chloe's eye doc appt. Her nystagmus seems much better so I expect Friday will be uneventful. I'd like to only have to worry about losing one sense at a time!!!

Boy, our little ones sure have the cards stacked against them, don't they!

Excitement for Daddy!

So last night while I was at a friend's house with the kids Stacey (aka "hubby" or "daddy") had a little Chloe drama. During intermission of Game 7 of the Stanley Cup Finals Stacey thought he'd go grab himself a snack. So when he went to lie Chloe down (who was sleeping) he realized he was all wet. Figuring she had leaked from her diaper, he lay her down to change her. When he opened her jammies he discovered her tube was out. Occasionally the extension tube comes unlocked and falls out and spills milk out all over. It's gradual and room tempurature so you often don't notice. So no big deal, just a mess, but at second glance he realized it wasn't the extention tube it was her WHOLE MIC-KEY g-tube!!!! It's the first time it's come out since the surgeon showed us how to replace it 3 months ago. So Stacey had to scramble around by himself trying to find the supplies to put it back in while her little hole straight into her stomach sat open. He was a mess by the time I got home! ;) He did great, in fact, but it was just the surprise of it all that caught him off guard. Better him then me. hee hee. I've had my fill lately! Alls well that end well! :)

Catching Up

Wow, I guess it's been awhile since I've posted. It's been a rough couple of weeks! Fortunately not too bad for Chloe! She did have croup again, but managed it quite well and is just left with a lingering mucusy cough. We have finally lost our overnight nursing care and are making the transition to caring for Chloe without it. The greatest benefit is that she is back upstairs with the rest of us and we don't have to coordinate her schedule (and OURS for that matter) for the nurses. The downside is obviously someone has to be up with her periodically throughout the night. We're in the middle of changing her feeding and med schedule so that she doesn't require so much attention at night, but at the same time we don't want to make it impossible for her to get out during the day either.

Chloe's doing GREAT with her therapies! Her therapists are impressed with her every week!!!! She's sitting like a CHAMP!!!! (as you can see in the pic!!!) continuing to bear more weight on her legs /arms, reaching and rotating more and just generally doing more and more. It's all very exciting!!!

The only "concern" I have for her right now is she seems to be having some decreased hearing. Both her OT (Occupational Therapist) and I have noticed it. She doesn't follow sounds with her eyes outside of her sight. She's always had very acute hearing. We're seeing her ENT on Monday and hopefully there's just a bunch of wax in there that he can clean out. Fingers crossed. She also sees her eye doctor on Friday. She has mild nystagmus (an involuntary jittering of the eyes), but I don't think it's anything to worry about. In fact I don't think I've even noticed it too much in the last few weeks.

School is winding down for Xander - 7 more days! He'll do several camps over the summer. Sadie will continue with her 2-days/week through out the summer. Our "live-ins" Ali and Kait will be moving out when school ends in the next couple of weeks. Xander and Kait called a "family meeting" to plan the "farewell celebration" comprised of a movie, crafts, cook-out, roasting marshmellows and a play. VERY CUTE! We will miss them very much! LOTS of changes going on in the Mason-Mann household!