Wednesday, July 29, 2009

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."

Monday, July 27, 2009

"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.

Saturday, July 25, 2009

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? ;)

Sunday, July 19, 2009

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.

Saturday, July 18, 2009

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.

Tuesday, July 14, 2009

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.

Friday, July 10, 2009

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!!!!!!!!!!!!!!

Wednesday, July 8, 2009

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!

Monday, July 6, 2009

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!

Sunday, July 5, 2009

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.

Friday, July 3, 2009

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.

Thursday, July 2, 2009

First Swim!!!


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



video

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.