Saturday, January 31, 2009

Lizzy Story, Part 2

It's been a while since I posted a Lizzy story. What's a Lizzy story you ask? Some of you will remember this post. My dear sister tends to leave long winded voice mails where she holds entire conversations - all by herself - for several minutes. This is not a rare phenomenon.

Today I received this Lizzy story, which really, is an audio comment about yesterday's post/photo shoot. Part way through her message it goes silent, but just for a few seconds before she beeps back in chatting away. In exploring ways to publish audio files without video, I also found a way to add an audio greeting to the top of my blog. It was fun to see if I could figure out the techy stuff. In any case, feel free to listen in on my hilarious and sweet sister as her love and passion for her niece and nephew shines through the airwaves.

Love ya Liz, but don't teach little Emma your ways!

And now, since I'm doing dorky techy things, I'm off to research custom built navigation bars. Anyone have any tips? (Renee, I'm thinking of you)

Friday, January 30, 2009

Valentine Photo Shoot

We played photo shoot at home today.

Here are my favorite two shots.

I couldn't help but play with my blog photo header as well. I also have a cute Valentine's Day card, but I'm saving that one for later.

Thursday, January 29, 2009

Way to Go Lilly Ledbetter!

(from About the Lilly Ledbetter Fair Pay Act: Lilly Ledbetter, a manager at Goodyear Tires, endured pay discrimination (and thus the loss of significant wages) during her 19 years of employment--just for being a woman. She won a substantial settlement in a lower court and then the the Supreme Court ruled against Ledbetter, saying that pay discrimination claims must be made within 180 days after the pay is initially set. This effectively gutted the ability to hold employers accountable when they pay women less than men--even if the discrimination continues for years. The Ledbetter Fair Pay Act, signed into law today by President Obama reversed this bad Supreme Court decision, putting us on better ground for getting fair pay!

Did you know that right now women without children make 90 cents to a man's dollar, mothers make 73 cents, and single moms make only about 60 cents to a man's dollar? We've got a long way to go for equal pay for women, but today was a great step forward.

"Thank you for working so hard on this bill to close the loophole created by my Supreme Court case last year. Today is a historic day in the fight for equal pay, and even though my bill passed there is so much work to do. I'm going to keep up this fight and I hope you will join me. Let's keep up the good work ladies! Together we can win equal pay." --Lilly Ledbetter

And thank you Lilly!

Sit, Walk, Run, Win, Fly

I am struck once again by the enormity of the election of the person, Barack Obama (putting aside politics for a moment). Discussions are happening everywhere about the impact of having an African American president. I don't consider myself a writer. Its been written about - and better - elsewhere. However, I am one of millions who has been changed and inspired by what has happened.

Dr. Martin Luther King Junior's famous words, "I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character" speaks not of evolving to a place in our society where we are all 'color blind.' It’s about seeing the whole person without passing judgment based on our preconceived ideas regarding color. Equality isn't about making everyone the same. It’s about equality of value.

Recognizing Obama's color is important because in acknowledging it, we honor the significant history of an entire group of people that goes along with it. The oppression, violence, racism, hatred, suffering, and hard work experienced by African Americans is recognized and remembered.

I can only speculate on the impact this is having on people of color. Overnight, a whole group was raised up. Ideas of self worth and identity have been shifted. I think specifically of the generation of children growing up right now. Of African American boys and girls who have the first family to look to, to dream their own dreams. It’s not just Barack that is making an impact. Michelle's strength, grace, and comfort in her own body inspires me. Their girls bring with them great hope and will be a joy to watch.

Racism isn't over. A lot of work still needs to be done and I hope we never stop talking about this. I want to read about the studies done years later on the impact Barack and his family has made, and not just in our own country. I believe the effects will extend beyond those in the minority group of African Americans but to other minority groups as well. People of other colors, religious beliefs, sexual preferences, and different abilities are given hope to dream bigger dreams. Because it’s about striving for equality for all while embracing our differences and honoring the history that comes with them. I have a dream that one day Sophie will not be judged by her diagnosis or the shape of her eyes but by the content of her character. It is possible and there is much work to be done.

Rosa Sat so Martin could Walk. Martin Walked. So Barack could Run. Barack Ran. He Ran and he Won so all our children could Fly. Thank you Libbey for sending me this simple but powerful song.

Wednesday, January 28, 2009

Valentine Layout

Now that this site is back up and running, I gave my blog a new (free) background in honor of St. Valentine's Day. I've had some of my Valentine decorations up at home for a week, so no, its not too early. This is way too much fun. The hardest part was picking from the many choices. I plan to learn to build my own layouts, but for now, this is a great solution.

Wordless Wednesday

Tuesday, January 27, 2009

What's in a name?

Mark says that it is my job to think up names for Maybe the May Baby, and his job to veto them. So far he's done a pretty good job shooting my suggestions down. For the name to fit in with Alexander and Sophia, it must be a strong, old/ancient (perhaps even Biblical) name. I don't have a preference for length or letters that it must start with. To have a good name meaning or famous people in history is a plus, but not a deal breaker.

My favorite two are Elizabeth and Katherine. Just think of the gazillion nicknames that she can choose from if she so desires? However, these are the names of my 2 younger sisters. So, according to Mark, they are currently used names and are out.

The name we agree on the most is Heleana or Helena (Hel-A-nuh, not Helen-uh). Think of the beauty of Helen of Troy, or Saint Helena, the mother to Emperor Constantine the Great (first Christian Roman Emperor) who is credited with finding the relics of the true cross. Nicknames could be Lanie or Lana (L-A-nuh) but not necessarily Helen (after all Alexander is Alexander, not Alex). It means sun ray or shining light. To say the name you have to exhale the Hel part (breathy) and the rest is melodic and pretty.

I also like Magdalene but Mark prefers the version Madeline, which is pretty good too. Maddy, Maggie, whichever would be fine. Sarah (previously Sarai before she and Abram had name changes in the Old Testament) is also good, but is already a cousin's name. Kennedy is good too, but is not really ancient enough. Still, they're on the list.

So, do you have a suggestion for a name that might work for this little girl? Maybe just isn't cutting it anymore. I've looked through baby name books and searched on line until I can't see. Leave a comment but please refrain from telling me why you DON'T like the names on our list.

Oh and Mark's only contributions so far have been Nicole, Amabo, and Seven. Help!

Monday, January 26, 2009

Bloody Monday

I know its been a post-heavy day, but holy geez. Today, as in just this 1 day, there were 71,000 job cuts announced. They're calling it Bloody Monday. Deere & Co, the world's top farm-equipment maker, said it would cut nearly 700 jobs between factories in Brazil and Iowa. As in, where my father and other family members have worked their whole lives. He's an old timer, which makes me worry that he may be at risk for 'early retirement.' Surviving the Deere layoffs of the 1980s was brutal, but this is scary. Caterpillar, where Mark's grandpa worked, provides the pension that his 90 year old grandmother survives on, and they too are getting hit hard. Mark is on the job market for next fall and the universities he has applied to keep announcing hiring freezes. I know more than one person without work at all or in danger of being there very soon. If you could, please take a moment to stop and send good thoughts or prayers that our economy turns around soon.

Debbie Downer, signing off.

Date Night & Slumdog Millionaire

Mark snapped this photo in my hooded Russian style faux fur coat last night.

We had an official date last night (woo-hoo)! The kids were cared for by the excellent Miss Paige while Mark and I went to a steakhouse to meet other parents who have kids with a little something extra (our local DSN Parent's Night Out). After grilling our own and stuffing ourselves mercilessly, we snuck off to the movies. Yes, I see the irony of eating red meat and then going to see a film set in India.

I cannot sing the praises of this movie enough to do it justice. Please see this film. Prior to going, all I knew was that it was set in Mumbai, had something to do with an impoverished man on the game show "Who Wants to Be a Millionaire?," and that it is taking the awards circuit by storm. Some have argued that they used every cliche in the book and have noted problems with language. In my opinion, these criticisms are hardly worth mentioning.

The cinematography is breathtaking. It's not a stretch to say you can almost feel the heat of the slums and smell the stench rising off of the garbage mountains. The beauty and life force of the people and vibrant colors of fabric being washed in fetid waters are set against a back drop of filth and violence. Extreme poverty and homelessness are depicted in a way that feels quite real but not exploitative in the way I tend to feel after catching a Save the Children infomercial. The characters that you instantly love (even if there is no way that you or I can relate to their situation) take us through; treachery, abuse and violence that is hard to watch, human trafficking, betrayal, disfigurement, putrid waters, chase scenes of children having fun and in other shots, running for their very lives.

Depicting the human condition on a grand scale, especially the aerial shots of the cramped tin roofed Dhavari hovels on fire after Muslims are beaten, burned, and killed during the Hindi-Muslim riots, is done in a way to ensure a hefty dose of liberal guilt without feeling like the audience is being voyeuristic. Amidst conditions that cannot be described as merely 'horrible,' a tale of survival, loyalty, hope, and star crossed love emerges.

It doesn't really matter if our hero wins the million dollars in the end. The people are shown en masse cheering on one of their own while huddled together around television sets in front of shops and the Taj Mahal. This happiness is dampened by the personal tragedy unfolding for the main characters which left me, and quite a few others in the audience, in tears mixed with anticipation, hope, joy, and sorrow. Finally, during the end credits, the cast gives us one last treat as they salute Bollywood.

Afterwards we rushed home to squeeze our kids, blown away by what we had just seen and felt. Can you tell that this film moved me?

In a word, Magnificent.

Buddy Walk Shadow Box

I've always wanted to put together a shadow box. Here's my first attempt (taken without flash to reduce glare). Items include the Team Sophie button my sweet sisters made and official Buddy Walk blue and yellow colored beads from our first year. The rest are from this past year including; Sophie's team t-shirt, her wrist band (we all wore them), her autographed photo of Karen Gaffney and photo taken with her at the DSN reception the night before the BW, sparkly crinkle paper that Sophie enjoys, the BW medal that walkers receive upon completing the course, and shots of Team Sophie in action. I topped it with block letters that were a gift from the Ds group in Madison, WI. Truth be told, it was harder than I thought to put together. It's a back loader which means it's difficult to keep the contents from shifting while putting the frame together after you get them 'just right.' I could have futzed with it for a few weeks and still found things to change. In the end, it turned out nice.

Friday, January 23, 2009

Laryngomalacia, Tracheomalacia & Down syndrome

The day of the pediatric flexible bronchoscopy went something like this: register at 8:25am, go to 3rd floor and wait 3 minutes for room assignment on 2nd floor, get room (closet sized) and wait over an hour for the numbing cream for both hands and wrists for placing the IV, wait for scope to be cleaned from previous patient, sit in dark room (closet) and try to get Sophie to sleep as she hasn't eaten since 10:45pm the previous night, converse with Cathy, update Twitter (geek), finally go to the procedure room and calm daughter down as they place the IV, BP cuff, O2, EKG wires, watch as doc pushes Versaid and Ketamine, get sent back to room (closet) to wait - 1 hour and a half after we were originally scheduled to begin (not bitter), get report and photos from Dr. Lung MUCH quicker than anticipated, comfort sedated girl as she wakes up, feed and dress her, home by 2, nap till 4:30, still slightly goofy -but good.

So what did we learn? Sophia has Laryngomalacia (la-Ringo-mal-A-sha) and Tracheomalacia. The cartilage of her voice box is soft and floppy as is part of her windpipe. As hypotonia (low muscle tone and floppiness) commonly goes along with Ds, this is no surprise. The sound called stridor (upon inhale) and cough that sounds like a bark or like croup (on exhale) is due to the soft tissues. Just like with croup, colds can cause inflammation and the slightest bit of swelling reduces the size of her airways enough to be problematic and noisy. However, unlike with croup, steroids will not help. The only treatment is comfort measures, Dr. Lung prefers cold vapor vs. steam, sitting up, getting older and growing bigger (AKA time). Typically this appears in younger babies and goes away on its own by 18-24 months, but in the case of children with Ds, it can take a little longer for the airways to mature and stiffen.

So, I take it as good news, albeit frustrating, that we basically just have to live with it until she gets older and cold/flu season passes. I was able to get a nebulizer with just saline and a neat pediatric sized mask with a purple dinosaur on it. I had to persuade her ped for this as both he and Dr. Lung feel that its just a semi-expensive vaporizer. Since we have 2 vaporizers in her room as it is and nothing else will help her condition (except 'shock the monkey' - dance outside in the cold air), I insisted we have it on hand. I heard from both docs about how there is no evidence that saline would provide anything more than temporary relief. I (and the other mom's in-the-know) am happy to have it as an option when it gets really bad in the middle of the night.

Here are some photos of the day including from the actual bronchoscopy. As always, click on the pictures to enlarge. If you are a visitor (or anyone really), please request permission to use the bronchoscopy photos by leaving contact information in comments.

Thanks for the good thoughts and prayers everyone. As for now, I'm removing twitter from the sidebar and going to bed.

Funny girl in purple hospital diggs.
She was pretty happy until her hunger increased while waiting.
After the procedure, getting foot IV removed in our room. Still very 'out of it.'

Coming out of sedation with her daddy, in her 'streets.'

Photos from Sophie's bronchoscopy.

Wednesday, January 21, 2009

Bronchoscopy Tomorrow, Twitter

Sophie's pediatric flexible bronchoscopy is tomorrow morning. (original post here) It's a safe, fairly quick, and not too uncommon procedure. However, I've decided to try out a geeky gadget called Twitter to send updates. I've added my twitter to my sidebar so you can read the updates there or sign up with twitter yourself. I should be able to send updates through my cell phone that will show up on my blog sidebar that can keep you up to date. Hopefully it will be quick and easy procedure and I won't have much time to say much, but I thought I'd give it a try. Hey, it's better than twittering a typical day or you'd read things like: changed dirty diaper, cleaned puke, changed another dirty diaper, lunch.

Honestly, I think I'm the one with the most nerves about this. The idea of sedating my little girl has me, well, uncomfortable. Thanks to Mark's mom for coming up to play with Alexander and Cathy who will be keeping me company until Mark's morning classes are done!

Tuesday, January 20, 2009

Yes We Did

Too emotional for words, with great pride, hope, and jubilation I join the world in celebrating this historic day.


Monday, January 19, 2009

MLK Day of Service, 44 in 24

Happy MLK Day of Service! Though my day of service means that I am determined to finish cleaning my own kitchen, I do value this national service event. After serving in AmeriCorps*VISTA for over 2 years and working in the domestic violence field for over 5 years, I value community service and hope to instill it in my kids. I long for the free time to get back out there. Thanks to those getting out there today.

In any case at my house we've got inauguration fever! Sophie had a dirty diaper that Mark was in charge of this morning. I overheard him say, "Don't worry Baby. Change is gonna come!" Crack me up...

And the countdown officially begins...

Sunday, January 18, 2009

Saturday, January 17, 2009

Birthday Boy

What a big boy you are. Over the last year you've had so many accomplishments and experiences. Your vocabulary has exploded and your imagination has taken off. I love our make believe adventures, your beautiful paintings, and reading stories with you. Potty training (finally) happened. Your beautiful eyes turned from blue to green, like mine. You started preschool and I love how excited you are to go and learn. Sophie is pretty sure you hung the moon and so am I. You are such a kind, sensitive, strong, smart little guy and it is my privilege to watch you grow and grow. The next year will be just as amazing. I can't wait till our next adventure, an Amtrak ride to Chicago!

Friday, January 16, 2009

Crank it

Because it's boot shooby doobie cold and we could all use a little warmth...

Thursday, January 15, 2009

Down syndrome and Windpipes

Sophie had her first meeting with our area pediatric lung specialist. He's our new ologist, pulmonologist that is. He listened to Sophie's chest as well as encouraged her to talk so that he could hear her voice. She coughed a few times and although my ear hears congestion, he still hears a bit of the bark. We played our recording of the latest battle with croup and he listened closely, calling her cough a seal bark. He spoke of stridor (the sound of the struggle to inhale).

Then we got a science lesson that went a little like this: Children with Down syndrome have midface hypoplasia, macroglossia, a narrow nasopharynx, and a shortened palate. (Translation = little face, little parts) These anatomical abnormalities along with generalized hypotonia (low muscle tone), an immature immune system, and a tendency to obesity predispose children with Down syndrome to upper airway obstruction. Gastroesophageal reflux disease (GERD) and chronic lung disease are also common in these children and may worsen airway problems. He went on to discuss the problem of sleep apnea, especially as she gets older.

Asking how Sophie's cough tends to come on, we described symptoms of a cold for a day - 1.5 days, then her cough changes from congestion to the seal bark, getting worse over the next day, croup for 3-4 ish days with a cold remaining for a week or more after croup. We discussed her meds, first a tablet, Dexamethasone 4 MG crushed, to cover 72 hours. Then Predisolone SOD PHOS 5MG/5ML SOL, 9 ML twice daily (liquid). We asked about a nebulizer with Pulmicort. We won't yet be making any decisions on treatment for future cases of croup.

Our next lesson was a mathematical formula about breathing, pressure, and radius of the windpipe that I won't even try and repeat. The message is simple; a very, very small change to the size of the windpipe can have dramatic changes to breathing. A typical adult's windpipe radius, is 16 times greater at moving air than a small child's. When you add the possibility of an already smaller than typical windpipe, anything that restricts the size can make a big difference. Inflammation from a cold virus, trunk hypotonia (that low tone business again) or 'floppiness' of the cartilage or airway itself (malacia), you can have problems. I asked if it was common to have the malacia when symptoms only present with a virus (meaning the cough only comes with a cold, not all the time) and he said, yes. My own research has lead to learning about laryngomalacia, pharyngomalacia, supraglottoplasty, and tracheotomies, but I'm getting way ahead of myself.

Dr. Lung needs to see what we're dealing with, so the next step is a pediatric flexible bronchoscopy which will be done in a week at our local hospital. I overheard him with his scheduler who informed him that he didn't have an opening next week and he said, make one. Move the conflict to my lunch hour. She's had 4 significant episodes in 2 months time.

So it goes, after midnight, no food or water. Check in at 8:30am, procedure at 10am lasting about an hour plus wake up time. Sophie will have her feet and hands numbed with a topical solution so that they can place the IV. The IV will keep her hydrated as well as deliver meds (I forgot to write down what he listed). She will be deeply sedated but not put completely out, meaning she will be doing her own breathing, some moving around or even crying with no memory. He reviewed her heart issues (small PDA a year ago and echo scheduled for next month) and is unconcerned as he cannot hear a murmur, which hopefully means it has closed on it's own. They will monitor HB, breathing, BP, O2 and give extra oxygen. They will also numb her airways.

A small instrument will go down her nose or in her mouth to look at Sophie's throat, voice box, windpipe, and smaller breathing passages of the lungs. There is no incision, this is commonly done, and is quite safe. He will be looking for any anomalies such as inhaled foreign object, tumors, and shape and size of her breathing parts. He told us to expect her waking up time to be an hour and likely she'll be sent home the same day. If she doesn't come off the sedation well or if he sees something he doesn't like, she'll stay overnight.

Once we know what we're dealing with, then we'll come up with a treatment plan. Mark's mom is coming up to hang with Alexander. It's the first week of classes so Mark can't be there. If you're local and want to hang with me in the waiting area, let me know.

As I reminded Mark, nothing has changed because of this consult or the procedure. We'll simply have more information in a week with a better idea of how to treat her when the coughing starts. And then we move forward.

Wednesday, January 14, 2009

Happy Birthday Sweetest Boy

Although this picture is over a year old, it is one of my all time favorites.
Today my boy is 4. How in the world did that happen? More on the big day to come...

Tuesday, January 13, 2009

On Notice

Sen. Clinton's confirmation hearing for the Secretary of State position is on and I'm glued.

I'm so excited and proud of her. Quotes are making headlines about violence in the Middle East, Iran and nuclear power issues, N. Korea and her "smart power" strategy to renew U.S. leadership in the world and to strengthen U.S. diplomacy.

What makes my hope float to the top today are her comments about women's rights and specifically a very important issue which is near and dear to my heart. Clinton stated, "Violence against women is criminal, not custom or culture." She speaks of fighting human trafficking. She's putting A LOT of abusers, in our own country and internationally, on notice. And my heart sings.

Sunday, January 11, 2009

Up Goes the Sun

Sophie and I have been doing a lot of patty cake, itsy bitsy spider, and rock-a-bye bear lately. Lots of times she will grab my hands and clap my hands together, her signal to start patty cake. I do the singing and either do the motions myself or move her hands. We begin clapping together, but usually that's all the motion she will do.

Last night in the bath she was putting her hands together above her head. I was slow on the up take but quickly came to realize that she was saying "Up" when doing this. As in "up goes the sun and dries up all the rain." Yipee!!!!

Friday, January 9, 2009

Croup Be - GONE!

I'll take a kick to the head over croup any day. So, I did. Last night Soph slept (SLEPT!) all night with minimal coughing next to me and laying down!!! Most of the time she had her little feet in my chest or even in my face, but I didn't mind. I did have a strange dream though. I have always been a vivid dreamer and can remember at least one usually per night. Pregnancy has added a level of bizarre to them. I was at my parent's houe and the family was all there having a pool party in summer. (It was not their house in real life). We watched in horror when an air raid began as war on American soil, in a big way, took us all by suprise. Stress much?

My conversation with Sophie's ped this morning went well. As Soph is not barking so much today as she is coughing up wet ickiness, we decided to stop the steroid after today and not continue for the full 5 days of meds, totalling 3.5 days of Prednisalone. It's not like needing to finish antibiotics for effectiveness and I don't want her taking any more than she needs.

As for the nebulizer, let's just say I didn't have to bring out mama bear to get Doc to see things my way. He's on board for next time with the steroid (Pulmicort) through a nebulizer and saline/distilled water with the neb only as a secondary comfort measure (as in during an attack at night versus going to the ER). Since she is on the mend and already has an appointment with Dr. D (ped lung specialist) next week, we'll either get the new script from him, or the ped agreed to write it.

Thanks to all who have supplied articles, support, and strength. Momologists Unite! On another note, Maybe seems to love my morning glass of orange juice and is moving like crazy!

Thursday, January 8, 2009

It's as Easy as Breathing

Except that sometimes breathing is definitely NOT easy. When it's your baby struggling with breathing, it's downright scary.

Monday Night: Tale tell signs of a cold appear in Sophie.

Tuesday Morning: Yep a cold, but will we avoid the 4th croup since November?

Tuesday mid-afternoon: No we won't and I'm not waiting to start the oral steroid, Prednisolone 5MG/5ML. She'll only get one of the 2 doses today, 9 ML each, as we started so late.

Tuesday Night: Not good. Coughing increases. Sleep is pitiful.

Wednesday Day: No fever (she never has a fever with croup). Nap time fails. Can't lay down to sleep, even propped up as coughing increases.

Wednesday Night: 2 vaporizers in our room. Still, we hit a new level. The cough is not good and that it so obviously hurts her, hurts me. What makes the hair stand up on the back of my neck is her attempt to inhale during a coughing spell. Attempt. Try. Not happening. Choking, gasping, her expression and my inability to stop it - pain. We've got a new sound with this inhale and that sound is fear. It passes. My fear does not.

We sat in the bathroom with the shower on hot for our Poor Man's Sauna (to breathe in the steamy air) while Mark talked to the nurse. A trip to the ER tonight? It could go either way and so the ER dance begins. Do we or don't we? Ran out of hot water and transitioned to where we would be for the night. The living room rocker/recliner. She's upright and doing better. Call a friend in "the know." ER? It could go either way.

11pm we record this for the docs. The room was dark so you can't see anything. The inhale is better and the sound of fear isn't there. Still, I pack the diaper bag and start the car. She settles down. She's sleeping soundly on her daddy's lap in the crux of his arm and breathing is good. No coughing. I turn off the car and Mark begins the first shift. He makes me lay down after midnight and begins reading another book about Russia.

4:15am her coughing wakes me up. She's been fully upright and asleep for 4 hours. On and off for 10 minutes she coughs. I bundle us up and we dance outside on the front porch for a few minutes. We call this Shock the Monkey, as in breath in cold air to calm down the inflamed airway, like icing a swollen ankle. It works or she stops on her own. Who knows?

My shift begins. Mark is to riled to sleep until 5am. I assume the position in the chair. Since there is no way I can keep up the fully upright position, we settle for Soph on my chest as inclined as I can stand. It occurs to me that we are three, me, Maybe, and Soph, snuggled in and breathing together. Soph's breath effects mine which effects Maybe's oxygen. I try not to watch the clock.

Thursday: Another Poor Man's Sauna as we clean up. Dr. sees us near 11. Weight: 21 lbs. Temp: 99.1 O2: 97 Lungs: clear. We play the recording of her cough. Doc agrees it's croup. Duh. Ask for a new remedy, up the steroid dosage, nebulizer, something. Yet, we are given No change in treatment. Doc says a neb is used to help the lungs and Soph's issue is in in her breathing tube (obviously not in these terms - give me a break I'm tired). He says a neb could do more harm than good. I think he meant a neb with epinephrine, which we haven't asked for or even Albuterol. Yes I know she doesn't have asthma or pneumonia. I've heard and read that a neb with steroid (and we're already giving oral steroids) or even a neb with just with saline can be quite helpful.

We get an appt. with Dr. Lung next week so this ped lung specialist can have a look. We're tired, frustrated, expected Something to change and nothing did. Doc says the ER probably wouldn't do much either (give oxygen and monitor her) but go in tonight if we feel it's needed. ? Not letting the nebulizer decision go quite yet. Any info is appreciated.

Refill meds and ask Mr. Bojangles (pharmacist) why I can't find the BabyLax suppositories. They stopped making it. Now they only have Pedialax for ages 2-5 and it's a liquid suppository vs. gel glycerin. We have to have it on hand as 1 missed dose of Miralax (given near bedtime as part of our routine that occasionally isn't done before she conks out) causes Painful constipation within 1.5-3 days. Sometimes introducing new foods or illness causes it too. Fine, I settle for Pedialax.

At Culver's for lunch we sit in a booth with giant window next to the train tracks and sure enough Alexander gets to see a freight train. He also, out of the blue informs me, "Mom you're not fat." I'm quite sure we don't talk much about being fat so I thank him and ask him what fat means. I got a jumbled reply, something about being different? I'll take the compliment anyway.

Soph is still sick and snot is coming out of her nose and right eye but nap time yielded a short and much needed rest. She's also saying her favorite new word a lot this evening, Uh-oh.

So tonight? ER? Poor Man's Sauna or Shock the Monkey? We'll see. Tomorrow I'm speaking to her ped to give an update and I plan to forward on some info about nebulizers for croup. Hope mama bear doesn't have to come out.

Tuesday, January 6, 2009

Another Look at Therapy n Stuff

Sophie has been doing really, really well in her Early Intervention (EI) therapies. She has Speech therapy (ST) at home once a week, Developmental therapy (DT) at home twice a month, Physical therapy (PT) twice a month on site, and Occupational therapy (OT) at home once a month. Her Developmental Playgroup (once a week on site) incorporates all of it and has been really positive for her. Next week her ST will begin filming Sophie and I doing everyday play. We're going to attempt to make a video that we can use in the DVD player of things like playing with different toys, saying the words and signing them too. I guess I'll have to wear something other than lounge pants next week. (Oh, who am I kidding?) Here's another look at recent therapy sessions with Sophia.

Other updates:

Sophie just got 2 new teeth in the past few weeks. Both are on the bottom, one is in the front/middle left, and the other is a molar on the right. She's taken to grinding them at night before going to sleep (JOY)! and she's not sleeping so great. I hope it's a passing teething thing. She's just begun refusing to eat any vegetables or meat. To make sure I had no doubt, during lunch a few days ago she shook her head furiously "NO" to the vegetables and beef and then sternly pointed (POINTED!) at the pears. If it were up to her she would live off of fruit and honey bee graham crackers.

In February Sophie has a follow up echo cardiogram and appointment at the peds cardiology clinic in town. She still had a small PDA a year ago that they want to monitor. We'll also be heading back to St. Louis Children's Hospital for repeat hearing tests. We got a good idea of her hearing last time, but this time they want to isolate each ear.

On a not so fun note, I believe we're going down the croup path for the 4th time since November. I know when the cough changes from deep and wet to a bark. Her cold came on fast this time and I'm not waiting to see, so she's on steroids, again. Good thing we had some left plus refills. Her last course was for 3-5 days, so we did 3 and she was good. Thanks to a new blog friend I was informed not to do more than 5 days on the steroids. Hopefully it won't get that bad. We had a good 2 weeks free of illness in the house that I am thankful for. Someone here has had a cold or flu bug nearly every week since the school year started in the fall. Now that Alexander is going back to preschool and our regular lives are resuming, I am prepared for the onslaught of tiny ugly germs.

Thursday, January 1, 2009

We'll Take a Cup of Kindness Yet

Should auld acquaintance be forgot,and never brought to mind?
Should auld acquaintance be forgot and days of auld lang syne?
For auld lang syne, my dear, For auld lang syne,
We'll take a cup o' kindness yet For auld lang syne

Here's a blast from the past. Mark and I weren't even engaged yet. Here we are with his brother and his wife along with our good friend and our future son's namesake.
Skip ahead a mere 6 years. Here we are at our house in Madison with our little guy, just 2 weeks shy of his 1st birthday. We all had the flu that day.

In Madison, 2006

Last year we rang in the new year at Mark's parent's place on top of Mt. Zubba Bubba in TN. Sophie had joined the family but slept through the festivities.

New Year's Eve 2008. We made our own party at home last night complete with games, silly hats, noise makers, glow bracelets, snacks, and New Year's Rockin Eve. Can't wait till next year when Maybe joins us. This morning I looked at the calendar and realized that she's due on Mother's Day. And just maybe next year, I'll enjoy some of my favorite Andre's pink champagne instead of Diet 7 Up with Pomegranate (though that's pretty good too).

My how things have changed...
Happy New Year!