Better Late Than Never - Cali pics

The kids in the airport ready to go!
Seesters. :)

Climbing on the seal outside AT&T park at the San Francisco Giants game.
On the ferry back from the San Francisco Giants game! Chloe, what's that you're drinking???
Stacey, Amy and best man from our wedding and awesome friend Brian!
Xander, Macy and Sadie at the Randall Museum in downtown San Francisco.
The kids working on the kid-sized scale of the bridge with the actual bridge in the background at the Bay Area Discovery Museum in Sausalito (highly recommended!)

Swimmin' with the fishes.
Chloe THOROUGHLY enjoying being OUT!

I got this in one of those emails that circulates around (thanks Elisa), and thought it seemed appropriate to share!

An elderly Chinese woman had two large pots; each hung on the ends of a pole which she carried across her neck.

One of the pots had a crack in it, while the other pot was perfect and always delivered a full portion of water.

At the end of the long walks from the stream to the house, the cracked pot arrived only half full.

For a full two years this went on daily, with the woman bringing h ome only one and a half pots of water.

Of course, the perfect pot was proud of its accomplishments.

But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.

After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream.
"I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house."

The old woman smiled, "Did you notice that there are flowers on your side of the path, but not on the other pot's side?"

"That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them."

"For two years I have been able to pick these beautiful flowers to decorate the table.

Without you being just the way you are, there would not be this beauty to grace the house."

"I wish she didn't have Down syndrome"

That's what my niece said to me when we were visiting CA. "Really?" I questioned. The statement had caught me by surprise and quite frankly I wasn't sure how to respond. In fact, I wasn't even sure what I felt. . . "I don't," I then followed up. "I like her just the way she is." As I sat and thought for a minute, I realized what a weird thing to think. . . by me, not her. Why wouldn't I want my child to NOT have Down syndrome. To NOT have to struggle with simple things like raising her arms against gravity. To NOT have 7 doctors that have to manage her complicated care. To NOT have to fight to breath whenever she has excessive secretions. Why wouldn't I want her life to be . . . well. . . normal??? But to anyone out there who has a child with Down syndrome or special needs, you may know what I'm talking about. Whatever makes our sweet Ms. Chloe "not normal" as some might say, is what makes her special. I think "special needs" often dredges up negative emotions, but to me I have come to learn that the "special" really means just that. She is special beyond what I can explain. She touches us in ways I could have never imagined an infant capable of. Adults and children, boys and girls, men and women, people of ALL abilities are touched positively by her every day. How could I EVER wish she NOT be her. The Down syndrome just happens to help make her who she is. Do I wish her life were easier? Of course! What parent wouldn't. But Chloe is magic and I wouldn't do anything to take that magic away. Ever.

Milk Protein Allergy Challenge

That sounds so exciting doesn't it? Said in a deep, loud booming voice..."The Milk Protein Allergy Challenge"!!! "Featuring. . . CHLOE MASON-MANN". haa haa. Okay, so we gave her yogurt tonight (or rather I gave her yogurt tonight) on the doctor's suggestion so we could "challenge" her milk allergy. Well, the poor baby threw up 5x, so I think it's pretty safe to say she does indeed have a milk protein allergy! She's sleeping comfortably now so hopefully the worst of it is over. There's always something right? ;)

New Family Picture

Here we are at Alcatraz.

A Smile for the Day

Sadie, my future rock star.

Listen carefully and know that I DID NOT say those things to her! Don't ask me where she got that song from. I believe it's a Sadie-original. Hope you can appreciate the 4-year-old angst.

Catching my Breath

Phew. What a busy week. It's been one birthday celebration after another this week. And it's not over yet!!!! So far we have celebrated Sadie's bday 3x and we've got one more little party tomorrow. Then, thank goodness, we can move on to the next one. ;)

So it's been a busy week with lots of appointments and catching up from vacation (and the time change). First things first, CHLOE PASSED HER HEARING TEST!!! Okay, well "sort-of passed" her hearing test. Her right ear passed 2x, while she couldn't get a read on the left because Chloe was SOOOOO miserable having the little probe in her ear. She doesn't like her ears messed with at all. HOWEVER, the audiologist said that one ear passing is as good as both and there's really no reason to believe the left wouldn't pass if Chloe was cooperating. (LOL "cooperating"). Anyway, we can retest the left ear another time or be satisfied that she's hearing well in at least one ear and know that we can always get it tested later if she shows ANY signs of loss (such as problems with speech development or not orienting to noise, etc.)

We're meeting with the pedi tomorrow to discuss whether Chloe might be having seizures. Stac and I are pretty confident that's not what's going on, but emailing back and forth wasn't cutting it, and I think he wants to examine her, so we're going in on a Sunday so we can have a chance to talk. Poor guy must be exhausted!!! We (and all his other patients) are so lucky to have such a great pediatrician!

As for me, well, I'm a long LLLOOOONNNNNNGGGGG story (hee hee), but the short of it is, I'm feeling pretty good lately. Spirits are up, all things considered, and I'm not as tired as I was about a month ago. I can manage much better with the kids with my stamina being, well, there. It may not be great, but it's there. So I'm plugging along, keeping the house in order, coordinating Chloe's car, taking care of the kids, recruiting kids for my new toddler program starting in the fall, and trying to enjoy the summer before it's over. Especially since it seems like it just started. All in all, we're all hanging in there most days and even doing quite well on others.

One of Those Days

Yup, I'm having one of "those" days. Not one of THOSE days, but one of "those" days. :) You know, the ones where every light turns green as you approach. Even the arrowed ones. Where your baby's smile lights up every person she sees. Where you feel like, even if only for today, everything is going to be okay. . . no, better yet, everything is going to be good. Ah, I LOVE these days.

Chloe's had a couple episodes of shaking. Twice she was MAD and then yesterday she had just finished therapy. It was as if she shuddered or shivered from a chill. Her whole body shook just for a second or two. Her OT was here and saw it, so she was able to help me report it to the doc. He wants us to watch them more closely for more details (HA! they happen so randomly, so quickly and so unexpectedly!!!) and he wants her to have an EEG. They could be seizures, but it's really hard to tell. I know, you'd think I wouldn't consider this part of my happy day, but the happy part is that I'm not afraid or overwhelmed. I think it will be nothing. I'm just going with it at this point and whatever it is we'll face it and conquer it, if need be. (and for those of you with experience with seizures I'm happy to hear your input!)

Today I wear my boxing gloves ready to take on the world. Today is one of those days. . .

and maybe it's one of those days because my middle baby is 4 years old today and I am empowered by the memory of her amazing homebirth where I learned my own strength as a woman was far beyond what I ever thought possible. Maybe THAT is why today I stand so strong. I love you Ms. Sadie Deanna.

Sadie at Alcatraz.

MUCH better today

Chloe slept great last night - all night with her CPAP and had a 'typical' day today. So looks like whatever that was has passed! We even hit a kids' museum today and now we're heading out to watch my sister play Ultimate Frisbee. Tomorrow we're hitting Alcatraz and visiting with my uncle and aunt and HOPEFULLY my cousin (3 of my favorite people in the world). That'll round out a VERY SPECIAL vacation. (Then it's back to reality.) See ya on the flip side (with pictures!)

Oh What A Night!

Wow, what a night. We had a great day, but I noticed while we were out at lunch that Chloe was starting to sound a little congested and rattly like she had mucus in the back of her throat. She seemed to gag on it slightly occasionally, but no big deal. When I tried to feed her dinner a few hours later she was very irritable and gagged every time I tried to feed her or give her a drink. I finally gave up and took her out of her seat. That's when the REAL gagging and retching and DRAMA began. This was the longest she's ever had an episode like this (or repeated episodes). She vomited mucus at one point, cried A LOT, had some stridor and had to work hard to breath because she was crying so much, gagged and retched a lot, and was just all around not doing great. I was having my sister get us directions to a) the nearest hospital and b) the best children's hospital. Unfortunately they are not one in the same. At home we are 10 minutes away, here we are more like 40. We took her in a steamed up bathroom, tried venting her stomach of air and finally decided to call the pediatrician back home to see what we should do. That's when she fell asleep. So we waited. . . and she slept. . . and we waited. . . She did wake up eventually with some "I'm okay" smiles before falling off back to sleep. Mommy, although feeling like she's been slapped in the face after becoming quite comfortable wtih Chloe's strong health status, is finally recovering and feeling as though the likelihood of a hospital visit has passed. Daddy, fortunately, had this one right. He didn't think we'd end up going, but I wasn't feeling so confident. The amount of mucus coming from her mouth and the difficutly it was causing convinced me she was going need to be suctioned (of course because we didn't bring the suction machine because it's getting returned!!!) But we all got through it and hopefully she will wake up feeling MUCH better. Our only guess is that she got dehydrated and now that she's on her feed will bounce back. Let's hope!!!!!!!!!!!!!!

Advice?

I'm trying to figure out what to do about Chloe's newest sleeping habit. She rolls onto her belly while she's sleeping, but doesn't lie with her head to the side, but rather she lies with it face down!!! Because of her low tone and the Ds I am just not confident that she will move. She just lies there so motionless. It's so scary. So as you can imagine I'm not getting any good sleep because I'm so worried about her rolling over in the middle of the night. She sleeps with one of us at home and both of us while on vacation, so we can keep an "eye" on her. But I'm wondering if anyone else has ever had this problem? I've heard of the Nap Nanny and know our friend Jax uses one, but I'm not sure that's what's right for us or not. Of course it's just more money to spend too!!! But if it would give us all some sleep I'd figure out a way to get one! Or does anyone have any other suggestions?

Cali is still treating us well. :) I wish I could post some pics! Last night we got to visit with the best man from our wedding! We haven't seen him in about 8 years!!!! WOW. He looks great!

Another Rough Night

Chloe had another rough night last night. . . or maybe it's more accurate to say mommy and daddy had another rough night last night. I went to bed nice and early feeling the need to finally catch up on some needed sleep from the time change. Chloe's pump woke me at 11:30 so I turned it off and realized she was all wrapped up in her pump tubing. That was scary! Then I got up and left the room to get her meds ready. When I came back she was FACE DOWN on the mattress not moving! I ran over and flipped her over and she was of course fine! But throughout the night she kept trying to roll over and her skin was really cool so I was worried she would roll herself back in that position in an attempt to warm up. So I woke up everytime she rolled or moved which was a lot! She likes to bury her face when she's on her belly so I'm adament about not letting her sleep that way. I don't trust her to wake herself and move out of that position! It looked like she wasn't breathing. I was shaken for the rest of the night.

I've called the respiratory supply company and asked them to overnight the missing CPAP part to us. I don't think she should be off the machine any longer. I think it's starting to take a toll on her and we don't need to start going backwards. Hopefully tonight will go better.

CA update: Yesterday we had a great time at the SF Giants game even thought it was a lousy game. It was more the adventure of it all then the game itself. Today we are hanging out and taking it easy. We'll enjoy the sun and the pool, take in a flick (Ice Age 3) and then some dinner. Tomorrow we start sight-seeing again!

California

Well, here we are in Cali. Chloe did GREAT on the flight, as did the other two. I wish I could post pics, but I don't have a hook-up here. I'm using Xander mini-computer! Traveling was long, but as I said, went quite well. We couldn't have asked for more. Yesterday, we enjoyed a nice July 4th parade (where we all got sunburned) and a day swimming in my sister's pool. Then we had a pizza picnic and watched fireworks in the FREEZING cold! The fireworks are all about the company. :D Today we're off the San Francisco Giants baseball game. Hope for WARM temperatures! WHY oh why did we have to be here during the "cold snap"?! I left the cold weather in CT to come to the cold weather in Cali? haa haa. Like I said, it's all about the company and the company here ROCKS! :)

One side note, so we did the sleep study, waited for the results and then LUGGED the cpap machine with us to CA only to realize we forgot a part and it won't work. Guess she's taking a little break from the cpap this week. Oops.

Beautiful New Blog

Check out my beautiful new blog! An amazing woman, Rebecca spiffed up my page for me and added a button. For you fellow bloggers, please feel free to add Chloe's button to your page. ;) Thanks soooooooo much to Rebecca. What a wonderful thing you did for me. I LOVE it.

We're off on our big trip to Cali! Wish us luck. I won't have my computer so I can't upload pics most likely, but hopefully I can check in occasionally from my sister's computer. We're so excited!!! My kids are sleeping in their own beds in their own room, Chloe is doing GREAT, and we're heading to California with my mother and step-father to visit my sister, brother-in-law and niece Macy AND I'm actually feeling pretty darn good. . . dare I say it. . . "life is good". :D HUGS to EVERYONE for all your support through the down times. Hope you can enjoy the "up" with me too.

First Swim!!!

Chloe enjoys the water with Ashley and big sister Sadie (and big brother Xander - not in pic)

Sleep Study results

Well the results are IN. There's good news and bad news. The bad news is she still has apnea in deep sleep and will require continued use of the CPAP (including our trip to CA - argh). She'll go again for a repeat study in 6 months, so she's on the CPAP for at least another 6 months (overnight - not naps). The good news is although our insurance benefit for medical equipment has ALREADY RUN OUT with 6 months still to go in the year (that's obviously NOT the good news), we "rented to own" the CPAP machine so we own it now and won't have to pay a ridiculous monthly rental fee. Some more good news is that after the medical equipment benefit ran out and we found out we were going to have to pay $250/month for her suction machine (are you KIDDING me????) her docs determined that we could get rid of it because she doesn't seem to NEED it anymore anyway. So that's progress. I get a little nervous without it. Sort of like working without a net, but most likely she'll be fine. Her choking episodes seem to be farther apart now and less dramatic when they do happen. So either her airway opening is getting bigger or she's getting better/stronger at clearing it herself. Whatever it is, we'll take it! :) Happy days. Progress is good.

Chloe's "new" room

All Smiles

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!

Good News

Well, some good news for our sweet friend Chelsea!!! She was released from the hospital today! No diagnosis, but at least they are letting her go home. They'll follow her as an outpatient. Continued thoughts and prayers that they can stay out and she continues to get better!

Chloe had a good day. She slept in this morning. She had some mucusy coughing but managed it okay (only a few minor choking incidents and NO blue or purple tongues). She's been junky this afternoon, but in good spirits, as usual. :) No nursing Saturday and Sunday nights and then we're done with it as of Thursday. We're applying for a grant to cover nursing care until she's off the CPAP at night, but I'm not feeling too optimistic.

We're looking forward to a nice weekend (weather wise) and my husband's first Saturday off since mid-March!!! Woooooo hoooooo. It couldn't have come at a better time (well, other then last weekend)

Sweet Ms. Chloe video

Chloe video

Croup again

Well, we just got back from the peds office and he confirmed what I suspected, which is that she has croup again. Yes, I say again, because the last time she was sick several weeks ago I was pretty sure it was croup, because Chloe had that characteristic seal-sounding barky cough, but since her airway is small anyway and the characteristic croup cough is caused by restriction of the airway we couldn't be sure if that's just how her typical cough sounds or if she actually had croup. But this time, she had a cough from the start and it did NOT sound barky in the beginning. It has transitioned to the croup cough. So, that leads us to deduce that she does indeed, and DID indeed have croup. :) (did you follow that? - hee hee). So we debated and decided NOT to treat with steriods at this point because although she can't really nap with all the coughing she does seem to be doing quite well at night thanks to the cpap, which if you remember is HUMIDIFIED forced air that helps to keep her airway open. It's the perfect treatment for croup. So as long as she can get into a good sleep so that we can get it on her, she should do fine. The doc said her cough should change over to a thick mucusy cough in the next few days. My guess is that's when the REAL trouble for her will begin, if at all. But fingers are crossed that she breezes through this one!

Last time Chloe had croup - too exhausted to sit up on her arms.

On a stranger note, in her vomiting episodes this morning she actually vomited up her meds from more then 12 hours before!!! Clearly her meds shouldn't have still been in her stomach so there is question as to whether her stomach is emptying correctly. Could have just been a freak thing, but something we'll be keeping an eye on.

Lastly, I was thinking about ME on the drive over to the doctor and how it does in fact relate directly to my life with Ms. Chloe. For the past 9 months (and really months before that) we have experienced crisis after crisis. Several taking us to the brink of death for our sweet angel. And each time as the crisis would subside I would feel this sense of withdrawal from the adrenaline that got me through the crisis. I am frustrated that my body has broken down in this way and in fact disgusted with it for I know what Chloe has gone through and continues to go through and keeps that smile on her face. I need to be here for her and my other kids. But I guess it does make sense that the constant roller coaster of hormones in my body has just finally warn down my systems that were fragile to begin with. I guess one of the hardest things about this is having to take the time to figure out and deal with what is going on with me. But my body has decided that I must.

A Different Kind of Struggle

First off, I need prayers for my dear friend's baby, Chelsea. She's been in the hospital since Saturday and they can't figure out what is wrong with her. She is Chloe's little 6-month-old friend. We are worried for our little friend and hope you'll all add her to your thoughts and prayers!

So, I'm not going to go on and on about this, but I wanted to just bring y'all up to speed on why I'm not sending updates lately. It's me this time. This annoying shell of a body of mine seems to have just given up lately. I'm not sure exactly what is going on. We (as in my docs and me) have some theories, but we won't know if we have the right answers until we see if the meds work. But basically we think that my adrenal system has just given up from all the stress and is therefor creating havoc with my other physical problems. I have an under-active thyroid that since Chloe's birth has been out of whack and not so easy to regulate. I also a borderline iron level and really low D. I have fibromyalgia, too and although I don't have much pain these days I am OVERWHELMED by exhaustion and malaise. I need about 14 hours of sleep AND coffee to actually feel awake for a few hours a day. It's the kind of tired where I literally can NOT stay awake. I find myself falling asleep while Chloe spends a few minutes in her bouncer or certainly when she naps. I'm having to cancel appointments and playdates and forget keeping up with my house. A good day means I make it from 6am-8pm without napping. But I don't have many of those days. As you can imagine, it feels impossible right now to manage two young children. I am desperate and sad and hoping that some day soon my meds and slew of supplements will start to make a difference. And believe me, I've tried the ol' "positive mental attitude". . . "today's going to be a good day", but it's not in my head and it doesn't matter how I WANT to feel. I'm not sitting around moping because I don't feel like doing anything. For those of you who know me I am anything but lazy and have lists upon lists of things I'm all fired up to get done. But with this, whatever it is, I'm too tired to even make lists. So anyway, I'm just writing so everyone can understand where I've gone. This blog is about our lives with Chloe and NOT about my current miserable health, so I may need to take a break from blogging until I'm back on my feet again. I'll take some positive thoughts and prayers and mojo so that I can get back to taking care of my kids and family! That's the most important thing to me.

okay, time to take Chloe to the doctor. She's been fighting a bad cold but as always being a true fighter! She's got a constant cough, but the smiles remain. We had two choking episodes this morning, but I was able to talk her through the panic. I wish you could see the way she looks at me with her sweet eyes during those episodes. She has so much trust in me. It's inspiring.

The Results Are In!!!

I don't really have time to blog on this beautiful glorious Memorial Day, but I know many of you are wondering how the BIG fund-raising tag sale went for gorgeous Ms. Chloe! Over the 3 days (the one mini sale we did a few weeks ago and then Sat and Sun) we did $1700! YAY! That'll cover one of our deductibles! We are very pleased. It was a LOT of work, and I don't know that we'd do it again, but it's done and we have soooo many people to be thankful for for donations and for helping out. And so many people turned out for the sale on Saturday (like 100's) including our local fire department who each made donations to her fund!!!! I was touched beyond words when I saw the fire truck pull up! It's been an amazing journey!!!
The local Ridge Road Fire Department - too bad they missed Chloe who was asleep with a bad cold!


My big kids enjoyed checking out the truck!

A GREAT day sandwiched in the middle

Well, her morning started out TERRIBLE with the whole blue tongue incident (see post All Good Things below) and ended almost as bad. But boy, let me tell you, she couldn't have had a better day in between! She was as happy as I've ever seen her today. All full of life and joy and just pure pleasure! She did GREAT at her Physical Therapy appointment and just completely impressed her therapist with her new skills. She ate and napped and laughed and just had a really super day. She didn't even complain when she had some granulation tissue cauterized at the hospital (that's tissue that grows out of her g-tube hole - it's her body trying to heal the hole). Nothing like a little near-death experience this morning to put life in perspective I guess. She certainly seemed to be enjoying life for all it was worth today. And she brightened up my day like no other.

Unfortunately the day didn't end on such a high note. We were on her bed laughing and having a grand ol' time when suddenly she started shaking. I thought "what the ???!!!" For a split second I even thought she might be having a seizure. But then the tears came and I realized she was in pain. She was shaking from pain!!! I tried to soothe her but she was clearly in pain. She cried like that for a few minutes and then just fell asleep. It was horrible. Stacey (my hub) said he has seen her wake like that and he thinks it's gas pains. I don't know WHAT it is, but I didn't like it, that's for sure! There was definitely something wrong for her to cry like that.

Wrapping up on a brighter note, yesterday we received our Jaxson's Blanket for Babes blanket from fellow blogger Lacey (Jax's mom)!!! Here's a picture of Chloe napping with her sweet, beautiful blanket. Lacey and friends make these special blankets for kiddos with life threatening illnesses. It came at such a perfect time and really warmed my heart. Here's the link to her blog with stories about kids who have already gotten blankets where you can learn more about it or send in a donation so other kids can get blankets too. Check it out!

All Good Things. . .

must come to end. Well, we had a REALLY long strength with NO incidents for Ms. Chloe so I am really pleased with that. She had one of her infamous choking, not breathing, blue-tongue episodes this morning. She just started throwing up and it was thick and mucusy and she just couldn't move it. Stacey was there this time which was so good because FINALLY someone OTHER THEN ME was there to witness what it's like. The stiff body and look of absolute terror in her eyes, the flailing and lack of sound coming from her, the BLUE tongue. And it just seems to go on forever. But she recovered (and far quicker then we did) and we suctioned out some gunk and she's doing much better now. She did have another much more minor episode shortly after that, that I wouldn't even really count and a BUNCH of spitting up for another hour or so. But now she's sleeping and soon we'll be off to therapy. Let's hope this was a just a bad morning and not the start of a new cold and a new pattern. At least now we have the right suction equipment! Thank goodness she's such a strong little fighter!

NO NAP!!!

That's no nap for ME! LOL I made it through a whole day without having to take a nap! Woooo hoooo!!! That is a huge accomplishment for me! I know most of you are probably thinking "who the heck has time for a nap? You're lucky if you were getting to take a nap!" But let me tell you, it wasn't a good thing. For a week I've been taking 1-3 naps a day. I haven't been able to do much of anything but meet the basic needs of my children and then sleep. (Hence the no blogging or updates). I've also been having belly troubles, so I think I may have had some virus or I was just having some sort of emotional break down, but I prefer to go with the first option. ;) It IS finally sunny too which is certainly helping.

Speaking of naps, Ms. Chloe on the other hand, took a whopping 4 hour nap today! Of course the one day I could have napped all day with Chloe I finally didn't need a nap. That's the way it goes. . . It DID allow me to get some things done and feel a sense of accomplishment that I haven't felt in a few weeks now!

Chloe's really doing great. Getting pictures up is going to take me til at least next week since this week needs to be devoted to our tag sale. Talk about a LOT of work. Can't say I'll be rushing to do this again! We've gotten so many wonderful donations, but that means so much sorting and tagging. . . not to mention some stuff needs to be cleaned or made ready for sale. Okay, enough about the sale - back to Chloe. She is AMAZING right now. She's healthy and rebuilding her strength and finally surpassing where she was before she got sick. She's sitting unassisted now for longer periods, although she still can't catch herself once she starts to lose her balance. She's also bearing more weight in her shoulders and pushing up on her arms when she's on her belly. She has learned to shake toys and pull toys with BOTH her hands at the same time (HUGE for her). And in the past few days she has started bearing weight in her legs!!!!!! (AKA "standing" hee hee). I hold her, but before she wouldn't even put her legs down. She's laughing more and more and really starting to "play" with us. We feel VERY lucky. My pediatrician called for something with my son today and said "I feel so out of touch with you". It has been weeks since he's heard anything from me! Do you think he misses me? LOL

Thanks for everyone's patience. It's good to be back! :)

Chloe's Doing Great (anyway)

Well, I know I haven't posted in a long time so I just wanted to take a quick second and let everyone know that Chloe is doing REALLY well. She's getting bigger and stronger every day. Once we got over that bad cold with the choking episodes, she slowly regained her strength and started to return to her old self. Now she's back to working on sitting, building some weight bearing in her arms and legs, LAUGHING, and just fun new baby tricks. I'll try to post some pics and videos in the coming days so you can see what she's been up to!!! You'll be amazed. :)

As for me, well, I've been having a tough week (hence the no writing). Something about a big birthday milestone, the crappy weather and having to put down my 2 1/2 year old dog for aggression (and NOW a horrible period) that has left me in the dumper. Oh, and it's a long story, but also a new puppy and then deciding that wasn't a good idea so having to deal with THAT too. With all that and the crappy place I've been in the past week it was just better I not post. "Pity party, table for 1, please." When I'm in that sort of place, I chose to dine alone. But time to start turning things around and open up my table to friends and family. Hopefully you'll be hearing more from me soon. Cheers.

NDSS video

Please enjoy this video put out by the National Down Syndrome Society.

Dreams video

Final Countdown

Well, my husband started my last week of my 30's by downloading the Final Countdown on my computer and playing it for me first thing Monday morning. Only a husband (who turned 40 last year!) would think that was funny. :) It's all good, 40, here I come!!!

As for Chloe, she seems to be back to her old self, smiling and happy as can be. Thank goodness!

Bracelets for Chloe

Fund raising bracelets are now available to help raise money for Chloe's medical care. All money for the sale will go towards nursing care, co-pays, specialized equipment and therapy, and any other medical expenses that insurance does not cover.

Bracelets have Chloe's name on one side, "Care for Chloe" on the other side and say "Helping with the climb" on the inside. They are royal blue, violet and lavender swirled and come in both adult and child sizes. A $10 donation is suggested. Bracelet requests and donations can be made by emailing mama.masonmann@yahoo.com .

Button

Can anyone tell me how to post a button for our blog so people can add our link to their blogs? It's the one thing I can't seem to figure out!

One of those days

So I had one of those days yesterday. One of those tough, yet likely pivotal days in our journey. . . or at least in MY journey. Chloe and I had a play date with a good friend who I actually shared Chloe's due date with! Her daughter arrived very early and Chloe just a little early, but in Maine while we were on vacation. Clearly both girls have a flare for drama!!! Anyway, her sweet little girl, one month older than Chloe, is just thriving in so many ways. It's the first time Chloe's been with a baby her age in awhile and it was very apparent to me all of a sudden all the things she's NOT doing. I spend my many hours and days focused on what she IS doing and celebrating all her new skills. But this day I was reminded of all she wasn't doing and all the things she struggles with (simple things like reaching for toys). It was hard. A hard day. . .

But then some time went by and I realized how wonderful it was for Chloe to be with this other baby who is her age and doing well. A baby who showed her to take a toy away from her. . . a baby who showed her how to shake a toy for the first time EVER. A baby who showed her it's fun to be a baby. I realize that the things that were hard for me were really just that - hard for ME. Although Chloe was a little overwhelmed she managed well and even learned some new skills. I hope she gets to have regular playdates with her little friend as they have so much to offer each other. It's exciting, thrilling even, to think of all the possibilities ahead of her and in the relationships she can form. I know she will touch so many lives as she has already, but so many lives will touch her as well. What a truly wonderful thing.

Rabbit Rabbit

Here's to a good month.

Spring

Ah, the joys of spring. Psss! First I need to complain about why I HATE spring!!!! Spring is such a crazy time of year for my husband's work. He has mandatory 6 days a week work weeks from March til June and he works long hours - usually 12 hour days. And to top it off he is so busy with work that even when he is home he's not really home (mentally). I'm honestly happy that he gets so into the whole crazy spring season at work. I think that's cool for him. But I spend the day waiting for him to get home (okay, not the WHOLE day, but by the end I am SO ready for a break), but by the time he gets home it's meds and feeds and dinner and clean-up and bedtime and one of us with Chloe and the other with the big kids and before you know it's 11pm and I'm exhausted and fried and NOT ready to start and do it all over again the next day. Then Sunday is spent trying to get everything cleaned and organized for another crazy 6-day work week. Ya know what else I hate about spring? Allergies. . . warm, beautiful weather one day and COLD miserable weather the next. . . hmmm, I thought it would be a longer list. I guess it's really the work thing that's so tough and especially with Chloe being so complicated and since I can't get ANY financial assistance for anything I'm feeling a little overwhelmed.

So how about what I LOVE about spring:

getting to sleep with the windows open all night long for the first time since last fall!, hearing the birds singing in the morning, waking up in the light of the morning, smelling fresh cut grass, children outside laughing, my kids being able to go out and play and run, flowers (EVERYWHERE!!!!!), the anniversary of Chloe's life (okay, yeah, that's the BIG one), warm warm weather, shedding clothes on those warm days (me and the kids!), natural Vitamin D, cheerful people, SUNSHINE, new life, driving with the windows down and the wind in my hair, grilling out, outdoor playdates and exercise, energy, fresh smells, warm rain (NOT cold rain - yuk), ice cream, outdoor festivals, change in wardrobe, LONG bright days, bugs (I know, that's a weird one). . . I could go on and on. . . my last favorite thing about spring is knowing that summer is almost here. Soon my husband will be done with his crazy schedule, the weather will be warm and beautiful and I will hopefully feel like a somewhat normal person again.

I guess you could say I have a love/hate relationship with spring. How about you?