Saturday, January 31, 2009
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
Thursday, January 29, 2009
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!
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
Tuesday, January 27, 2009
Monday, January 26, 2009
Debbie Downer, signing off.
Friday, January 23, 2009
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.
Coming out of sedation with her daddy, in her 'streets.'
Photos from Sophie's bronchoscopy.
Wednesday, January 21, 2009
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
Monday, January 19, 2009
Saturday, January 17, 2009
Friday, January 16, 2009
Thursday, January 15, 2009
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
Tuesday, January 13, 2009
Sunday, January 11, 2009
Friday, January 9, 2009
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
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
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
For auld lang syne, my dear, For auld lang syne,
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).