Quail Day- Holiday Highlight’s Week wraps up!

Posted on November 5, 2009 by Cole | 1 Comment

There are decidedly fewer photographic instances of the Quail on Halloween. Not for lack of trying- but maybe a baby’s first Halloween is not unlike a baby’s first birthday. It’s really for the parents- not for her. Yes I dressed her up; yes her sister got to choose her costume and yes she was taken along to the festivities of the week. But at our Downtown festival she slept, during the school party she was at the doctor getting her flu shot and finally by the last and actual Halloween party she was up and dressed but more than a little distressed by all the commotion and cumbersome nature of the added layers of her costume. She was Captain Huggyface- the illustrious sidekick of the PBS hit cartoon WordGirl. We were able to locate a monkey costume for the base layer, then I made shirts for the kids with the advice of a helpful fabric store clerk and a particularly crafty co-worker with home-made iron on transfers. The Quail’s hip-helper therapy pants happened to be a shiny red that coincided with Capt Huggyface’s costume and lastly I had ordered a Hanna Anderson Pilot Hat for both of the girls when I was thinking about the costume and also thought the Quail might have a hearing loss and be in need of hearing aides. I’m happy to report she is able to hear us all too well and the hats are now just costume accessories and not a needed therapy aide. It was a lovely holiday and we’re glad to be able to move on to the more thoughtful upcoming ones.

Quail Day; 31 for 21 day 29: From Buddy Walk to Buddy Sit

Posted on October 29, 2009 by Cole | 4 Comments

The Quail has taken to sitting like nobody’s business! In a mere week she went from toppling down after a few seconds to sitting and playing with toys for minutes at a time! Way to fly little Bird! Way to fly!

31 for 21, day 24 Evolution of a Baby

Posted on October 24, 2009 by Cole | 2 Comments

Quail Day- Speaking of First Rides; 31 for 21 day 22

Posted on October 22, 2009 by Cole | 3 Comments

We went to the park one day, in the very merry month of October….

While last Sunday was Zuzu’s first ride on her shiny new tricycle; her little sister also got a turn for firsts- her first swing ride! And she LOVED it! She was all smiles and giggles. It was a beautiful day for it and it was so wonderful to watch the girls swing and giggle together. Zuzu was about the same age when it occured to us to take her to the park and ride on the swings. It has remained a top activity choice in her repotoire and looks like the little Quail will be following suit.

Thanks to all of you who inquired as to our wellbeing after last week’s Quail post. Thursday was the last day of the worst of the worry and eating difficulty. It really does seem like she just had a cold and that was affecting her appetite and sleep. On friday we went to OT and PT prepared to tell Kathy that we thought we might be done with trying to nurse if she was now doing so poorly with the bottle and it was affecting her sleep. We had been to the cardiologist and the GI dr that week and there didn’t seem to be a clear cut medical cause for the difficulties and she had no fever and was playful inspite of the decreasing amounts of food and sleep. Perhaps it was also a little growth and developmental spurt taking up her time, her focus and her energy. We went into OT and I told Kathy about what a difficult week it had been. She suggested we try nursing so she could assess if anything could be done differently or if there was something causing the problem. I figured this would probably turn into a scream-and-sob fest. But really the lesson in all of this was to just be. We don’t always have to “diagnose” every little irregularity. We don’t have to make ultimatum-style decisions about what we will or won’t do. Some days will be hard. Some days will be cake. But they are all our days. We sat down to nurse. The Quail fussed and clucked at me for all of a few minutes and latched on and nursed like old hat. 23 minutes later she was drifting off with a belly full of milk. She did pop up long enough to throw up a full ounce down my shirt. I guess the lemonade of that is that we now know exactly how much milk makes up Niagra Falls. We had done a feed and weigh and she took in 4 oz and then threw up and we weighed her again and an ounce was missing. Well not missing, more like down the front of my shirt; but you get what I’m saying here. It was fine and Kathy felt we didn’t need to come back the next week. It had also been just before that session that she had sat up for Ashley our PT. It was the best day! And to top it all of Sara Rosenfeld Johnson; the illustriave speech therapist; was at the clinic doing evaluations and she had a few minutes to pop in and introduce herself and meet us! We are thinking of signing up for an evaluation the next time so it was nice to put a face with a name. It was just a brief hello but she took the time to get down face to face with the Quail and talk to her. When she reached out to touch her face though The Quail flinched away. We questioned if that was just her stranger anxiety which she has been having a bit of a time with or a hypersensitivity to touch which she has on occasion exhibited as well. When she knows someone though she really doesn’t mind them touching her face- so I would tend to lean towards the former explanation albeit less clinical. Although didn’t I just get through saying I didn’t need to diagnose every little irregularity?

All in all a wonderful wrap-up to a hard week and we are grateful for the little bits of Zen training in our lesson in letting things just be.

31 for 21: Day 17- Yes. Babies that have Down syndrome will do what other babies do.

Posted on October 17, 2009 by Cole | 1 Comment

Look who’s sittin pretty!

: Sittin pretty

Quail Day- The heart of the matter; 31 for 21 Day 15

Posted on October 14, 2009 by Cole | 3 Comments

Vellamo

So we have been back to our pediatric cardiologist for a follow up. Not such a great visit- no impending open heart surgery but he talked a lot more about it and how great the heart team we would use is. Which of course left me gloomy and worried. I’m wondering about giving up trying to nurse- he said that there was no need but he also said her weight dropped off a bit- and I know the main change in the last few weeks is trying to get her to nurse and it tires her out and she ends up eating less. Although- when I plotted her weight and height it didn’t look to me like it had dropped at all. I work with a pediatrician and I showed her my handy charting work and she thought it looked accurate as well- that being the case her weight has not dropped.

I need to stew over yesterday’s visit some more I don’t want to get all alarmist about it- he said essentially things are the same- but he was just more guarded about her future and described the septum wall hole as bigger then he has in the past and said he was surprised she hasn’t needed surgery already. So I was a bit taken aback. I guess we have probably always been in limboland over this- but since she doesn’t have active symptoms we can easily see; I don’t often think of it and am more focused on how great she is doing. This is just the most time he has spent talking about surgery. Before he always said we were a long way off from worrying about it and my overactive mind heard the start of him mentally preparing us for surgery. I hope it is just my overactive imagination but I tend to be right about these things which doesn’t help my paranoia.

I just hate, hate, hate the thought that something I might be doing is contributing to a compromise in her health. He said nursing was fine and he would tell me if it wasn’t but he also said there was a drop in weight gain- which is what could lead to surgery. Maybe he knows it is inevitable and thats why he said what he said. He was very kind about it- he outright said that trying to teach a baby to nurse that doesn’t want to is stressful enough and I shouldn’t add to that by thinking guilty thoughts that it is harming her- but I can’t help myself. The nursing is to strengthen her oral-motor muscles- so she will not have as hard a time with solid foods and will have better speech clarity. Both of which are areas that are typical to be delayed in kiddos with Ds. Of course heart surgery is a typical outcome for a child with Ds as well- it’s all just so gray- there isn’t any clear right or wrong right now- which is my fear that in hindsight I’m going to be left wondering if I should have made the other choice. If she has heart surgery I’ll feel guilty that I should have let her have an easier time of drinking her milk from the bottle. If she doesn’t have heart surgery then I’ll wish I had been more tenacious with teaching her to nurse. I can’t know the future now so it just leaves me in bits and pieces over what to do for her. I think we are usually blessed to not have to face the enormity of the consequences of our actions on our children’s futures on a daily basis. It’s just so hard when we do have to face it; well maybe not head on, but from a spot in the mist where the road ahead is less clear.

31 for 21, Day 10- My baby is not a Down’s- let’s talk about language

Posted on October 10, 2009 by Cole | 1 Comment

I'm talking to you

I’m taking a lead from Kaitlyn’s Korner and reblogging her reblog from Patty at To Love Endlessly

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The “s” in syndrome is not capitalized (syndrome).

An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.

Encourage people to use people-first language. “The person with Down syndrome”, not “the Down syndrome person.” A person with Down syndrome is not “a Downs”.

Words can create barriers. Recognize that a child is “a child with Down syndrome,” or that an adult is “an adult with Down syndrome.” Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.

It is important to use the correct terminology. A person “has” Down syndrome, rather than “suffers from,” “is a victim of,” “is diseased with” or “afflicted by.”

Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that “all people with Down syndrome are the same.”

Here are some basic guidelines for using People First Language:

1. Put people first, not their disability* A “person with a disability”, not a “disabled person”* A “child with autism”, not an “autistic child”

2. Use emotionally neutral expressions* A person “with” cerebral palsy, not “afflicted with” cerebral palsy* An individual who had a stroke, not a stroke “victim”* A person “has” Down syndrome, not “suffers from” Down syndrome

3. Emphasize abilities, not limitations* A person “uses a wheelchair”, not “wheelchair-bound”* A child “receives special education services”, not “in special ed”

4. Adopt preferred language* A “cognitive disability” or “intellectual disability” is preferred over “mentally retarded”* “Typically developing” or “typical” is preferred over “normal”* “Accessible” parking space or hotel room is preferred over “handicapped”

Guidelines from the National Down Syndrome Congress

http://www.theupsideofdowns.org/down-syndrome/proper-language-guide

31 for 21: Day 9 Busting up a stereotype

Posted on October 9, 2009 by Cole | Leave a comment

screamin' mad

Babies that have Down syndrome are not passive angels that are alway happy. They are regular babies with a full range of emotions just like any other baby. If you assume my baby who happens to have Down syndrome is filled with joy and wants to love everyone she meets; you will be sorely disappointed as she clearly notes that you are not one of her people if she hasn’t already met you and hung out with you. She will give you a cutting look and turn back to her people.

She knows us and if you take the time, she may get to know you. You will have to earn her love, trust and respect the same as you have to earn mine.

Now that said; please do take the time to get to know her and let her get to know you. She is awesome.

Quail Day- First Bites

Posted on October 8, 2009 by Cole | 1 Comment

We started rice cereal this past weekend. With Zuzu we had started at 5 months when the first tooth popped. This time since we were still working on teaching the Quail to nurse we held off, and off, and off… and in the meantime she politely sat at the table in her highchair, mouth gaping and eyes trailing our every bite. She’s ready. Our first dear pediatrician who has since moved had told us we would know when the baby is ready to start to eat due to these very behaviors starting- when we see this it’s time to offer, and offer, and offer. The Quail who has always been excellent at getting her ZZZZs also had recently started waking twice a night to eat, oh say 8-11 oz at a crack. Kathy told us that was also a read flag that she was needing more than just the breastmilk. So the big day came and as you can see above she expressed a full range of emotion over this event. But generally has quickly adapted a full bowl of cereal into her nightly routine. Just 2 nights ago she was even up for seconds. The first few bites came right back out of her mouth. We were unsure if that was due to the tongue thrust issues you hear so much about or just regular baby-first-time-eating-food-on-this-planet sort of stuff. Probably a little of both. We had OT on monday and Kathy was able to help us with the assistance of her trusty syringe to see that the Quail could indeed gobble up her cereal with a little precise angling of it into the back of her mouth with near the 2nd molar spot. Alternating about .7 mg a side for a few and then reintroducing a very shallow spoon with a light press-down motion to the front of her tongue seemed to do the trick. The Quail definitely let us know when she had enough of the syringe and wanted the spoon and vice versa with a little stealthy blocking of the device. All in all she is a happy bird, sleeping a little more soundly in her nest at night. Now if only I could convince her not to practice her raspberries during dinner time….

3 years ago right now

Posted on October 4, 2009 by Cole | Leave a comment

last call

tryptaphan & ambien

I was a week overdue with rising blood pressure 3 years ago tonight. I was scheduled to go to one hospital only to receive a call that there was a full moon, the weekend was coming and there was no room in the inn. Well- that’s how I remember it at least. My OB called (oh yes- the only one I hadn’t met in the practice and had heard horror stories about his meanness and ego). He called saying he heard the hospital said there was no room to induce me and bring this little one into the world, and how was I feeling; and if I would like and had my bags packed; then yes he could make arrangements for me at another hospital if that was agreeable. My bags were packed, my tears wiped dry and off we went with one last pause in the exit of our life as two for a photographic still. When we returned, God willing; there would be three and life would never be still again…

We drove to St. Francis Womens’ & Children’s Hospital in Greenville; a mere hour away. The cervidil was placed, Lovey tried to make himself comfortable on the fold-out chair for a night in wait; the machine turned on to monitor and record the smooth, quick rhythms of the last hours our hearts would beat nested together. An ambien offered and turkey sandwich administered, whispered wishes of good luck and health and cheer for the day unfolding ahead of us….