Friday, May 29, 2009

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)

Thursday, May 28, 2009

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.

Monday, May 25, 2009

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!

Thursday, May 21, 2009

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!

Tuesday, May 19, 2009


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! :)

Sunday, May 17, 2009

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.

Tuesday, May 5, 2009

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!

Sunday, May 3, 2009

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 .


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!

Friday, May 1, 2009

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.


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?