Baby is always right on schedule- Karen Maezen Miller

Tenderheart

A mother’s heart is capable of defying logic and reason- Tracie Shafer

Little One

Love can hope where reason would despair- Lord Lyttleton

The Girls

Baby Buddha

Have you met Karen Maezen Miller? Either in real life or online or in good-old-fashioned print? She’s one of my literary and Zen heros. As mentioned in my “Meet the Family” page I find I relate best to Zen parenting books in my aspirations of the kind of mother I want to be, and I do mean that in both definitions of kind. I know, I know- anyone who knows anything about Zen practice would probably be appalled by my striving to be Zen- it’s in line with when I used to repeatedly run late and have to hurry up to get to yoga class to finally settle in and find some peace of mind.

The book, Momma Zen was one of my favorites from my first parenting year. I remember when I was bringing it to work with me to read during my break times while I was pumping. I remember another coworker who was also a pumping mother saw me reading it and I tried to explain how I liked the sheer idea of Zen parenting. She laughed at me and told me to let her know how well that works in a few months. I squared my jaw, shook my head and headed into the friendly barn at work to pump (our lovely euphemism for the room they let us milk ourselves in at work) and read. Then I found her website Cheerio Road and found myself pondering her eloquent thoughts on a regular basis. The one that touched me the most and let me know that indeed I do have a home in this school of thought was actually this one. Her list of letting go happened to coincide with my return to work post maternity leave with The Quail. The final line- “Baby is always right on schedule” has become my momtra in learning to live, love and learn with a baby who doesn’t necessarily develop according to the timelines that “the books” predict. I have it posted at work so I can look at it when I feel worried that she isn’t sitting like the other babies are or rolling the other babies are or talking like the other babies are.

Which by the way- yesterday she started sitting independently in that wonderful Weebles wobble way (we’ll continue to work on the not falling down part) yesterday- a day before she turned 7 months old. She started rolling from back to side with the occasional flip all the way to belly the week before and blowing raspberries in the last week as well. And did you notice- the first picture ever where you can see her little neck!

Baby is right on schedule.

Family Fun

It’s good for every individual and family to have goals for themselves right? Well here are my individual goals for my family!

1. To have a family blog

2. To get the household To-Do list caught up

3. To maintain a family sourdough starter

4. To make cinnamon rolls from scratch early in the morning so everyone wakes up to that wonderful scent

5. To have a regular family dinner

6. Start up a family exercise routine that we all do together to include yoga, walking, swimming and gardening

7.To learn to use a DSLR to better document family life with.

8. To learn to use a photo-editing program to enhance those DSLR shots

9. For each family member to have a good book they are always in the middle of

10. to have a creative project that we are working on with the girls (art/craft/writing/cooking/gardening)

11. To always have a trip to South Dakota, California and Wisconsin planned each year

12. To keep the clutter level in the house down to a dull roar

13. To have a flower, herb and veggie garden

14. To have our household improvement projects prioritized and one started

15. To have ongoing letters to my girls started

16.  To have Lovey’s and my workloads maintained AT work so they don’t infringe on family time

17. Milestone  Calendar formats started for the girls

18. To invite friends over to play at ou house at least one time a month

19. To go to GNO one time a month

20. To have one-on-one time with Lovey, Zuzu and the Quail one time a month

21. To write a children’s story

22. To organize my photos

23. To get started/prioritize my photo projects

24. To learn to download music and have a great collection together of favorite songs.

25. To weed through the extra junk in the house and get it to the thrift store

26. To have a fun activity planned with the girls one time a month- trip to zoo, apple orchard, goat farm, berry picking, etc…

27. To have a comforting evening routine for everyone

 28. To take time to sit and smell the tulips 🙂

Quail Thoughts

I was going to start this as a pity post- that’s how it felt at the time I started it. Thursday was the start of a round of “routine” 6 month check ups for the Quail. I’m not sure if it varies by area. But here our Early Intervention program and our geneticist recommends the following check ups every 6 months for the first few years:

thyroid check

hearing evaluation

vision evaluation

geneticist evaluation

On top of those we have of course the standard 6 monthwellness check with her pediatrician and ongoing cardiac evaluations and echo-cardiogram monitoring. It’s time to review her IFSP. We are starting physical therapy and she is currently in occupational therapy for feeding/nutrition therapy. And we are getting a referral for a speech evaluation. Oh and did I mention she has her first ENT evaluation tomorrow as well?

It’s a lot- and yet- it’s so good and easy and she is generally healthy. It’s when all the appointments happen to lump together like that that I notice the little “extra”. But in reality- our first year with Zuzuwas not easy either. She was a high needs baby- no actual colic- just not wanting to be put down-and she was frequently ill with one infection or something like thrush or diarrhea in response to the antibiotic that treated the primary infection. So we are not newbies to the need for frequent medical treatment. But I digress.

On 8/20/09 the Quail had her pediatric wellness check. This also served as a followup to her ear infection in her left ear earlier this month. She had been treated with10 days of amoxicillian  and the infection was gone. This is only her second, “treated” respiratory type ailment. She also had an URI in the beginning of June but at that time they treated it more like asthma with a nebulizer with albuterol and prednizone. The wheezing in her chest healed then and hasn’t returned so there haven’t been any other URI since then until the EI in the beginning of august. At her wellness check she weighed in at a wopping 14 lbs 9 oz, 26 inches and a head circumference of 16.5 inches. Which for a baby that has Ds is huge. Her height shot up to the 75% on the standard charts! Her head and weight remain happily around the 42% on the standard charts (which is what she has averaged since birth). Again I think genetics comes into play here (Zuzu was always around the 90th% in her measurements). She did spike a fever of about 101.5 the day after her vaccinations but as with the previous 2 times she has had a fever it dropped back to normal the next day.

On 8/26 she had her vision and hearing evaluations. Her eye dr (and this service was paid for by Babynet) said he detects no current problems with her eyes/vision. He recommends she come back in a year.  The hearing tests didn’t go quite so swimmingly and this is where the original pity-party part of the post (say that 5 times fast) comes in. Her left ear still has fluid in it- no infection seen- just fluid- so the audiologist recommends she go get an ENT evaluation. Lovey is taking her tomorrow to the wonderful ENT who put tubes in Zuzu’sears. He had already warned us the need for tubes runs in families (and also typically in kiddos with Ds). Well she still has fluid in her left ear from the earlier EI. So they couldn’t get any sort of adequate reading off of that ear. Her right ear is also showing signs of a hearing loss. And that is what was more concerning. She did pass the newborn hearing screen and the audiologist said that she can most likely hear at a conversational level but is not hearing soft sounds such as consonants which can hinder speech development. They did the tympanogram, OAE and the sound boothexam. Later this month we’ll go back to attempt the ABR. I say attempt because this involves making a baby go to sleep on command. While it is good she doesn’t have to be put under for the test it will be a neat trick to get her to go to sleep on our will. Sort of like herding cats I imagine. We have a 2 hour time slot to work our magic and were given suggestions like keeping her awake and hungry in the morning so she can then eat and conk out when we get there. A dear friend has volunteered (or more accurately been commandeered) to ride along on the trip and keep poking and telling hilarious stories in the back seat to keep our dear Quail awake and alert. We really won’t know until that test is done if it is a severe or slight hearing loss. I say this is no longer a pity party because a dear group of online friends were so positive and supportive upon hearing this and reminded me how much medical technology has improved and how this is really a fairly fixable issue to have. And sure enough our lovely audiologist told us she wouldn’t hesitate to put hearing aides on the Quail should she need them. Here’s hoping they come in purple polka-dot!

On 8/27 we had our regular OT and PT appointments. PT went swimmingly- we noticed when she was on her back and a toy she wanted was placed near her head, in her line of sight she would lift her little top leg and make the motion to roll her Buddha belly over. She already does well going front to back. Thus as mentioned in a previous post tummy time has become more exercise for us in repeatedly flipping her back to do her neat trick again. And then came the real miracle of the week, my 6 month old baby- nursed to sleep for the first time! We didn’t do a feed and weigh. At each OT appointment thus far she has spent more time exercising her lungs then her oral-motor area. So Kathy said she would not polk the baby prior to nursing and I was to just come in and attempt to nurse. I tried a new position- which will surely set me into PT if I have to do it long- and we were off! The Quail seems to have great proprioception needs. It seemed my holding her on the boppy pillow and her trying to feel stable and nurse at the same time was too much, but when I leaned over her and let her body be sandwiched between my body and a firm surface she was much more accepting. This hasn’t been fool proof- and I still have to use parts of her Dr. Brown’s bottle to get her to latch on but it is a huge improvement and gives me hope that this little Quail may become a nursing champ one day as well!

Next up- more PT and the Geneticist.

Oh- and lastly- she isn’t really blonde- I think that’s why this picture is so cute to me!

ps- The Quail is going to get tubes. Hopefully this will spare her much illness and help her hearing!

While I myself am no sportsman, a dear friend of our family, John Motoviloff ; is an avid hunter, fisherman and outdoor writer. Many of my happy memories of Madison involve home-cooked, hunted and gathered meals and the ensuing discussions of the meal itself with his lovely family. I can relate to food and where it comes from and have a great appreciation for that now. While I would sadly have to become a vegetarian if I was responsible for the hunting and gathering in my own home- knowing John and his pure appreciation for nature, animals and the world around us has helped me to see that not all hunters are just out there for the joy of shootin’ somethin’ up.

When we lived in St. Louis, Missouri; I had the pleasure of working for a wonderful organization called- The Recreation Council of Greater St. Louis. In my tenure there I had the opportunity to participate in many outings that were arranged to provide recreation and social opportunities for all individuals with developmental disABILITIES. Their mission is to ensure that all people, regardless of ability are aware of and have access to activities and programs of their choice. This is one of the kindest, cleverest and energy-filled groups you could hope to work with. If there is an idea of an activity that someone likes to do- they will help figure out how to give everyone the opportunity. While there, we participated in sailing and bicycling expeditions as well as working closely with the local parks and recreation departments to make sure that the local parks were available and accessible to everyone. They also would assist individuals and families financially to make their recreation hopes and dreams come true with funding for activities and camps of their choice.

It is in the spirit of these two paths in my life that I want to point out another organization that is providing recreation around the country to people with disabilities or critical illnesses. Last week I heard a promotion on the radio for a non-profit organization called United Special Sportsman Alliance. They can be located at http://www.childswish.org. The woman who was describing their organization talked about how they are able to fill a void that is in the scheme of The Make-A-Wish foundation. Make-A-Wish deems hunting and fishing too dangerous of a dream to grant. USSA grants wishes to children who are critically ill or have a disability that are dreaming of the opportunity to try hunting or fishing. They schedule events all over the country where professional hunters and anglers donate their time and their tags to help make these dreams come true. They even described an upcoming bear hunt where people who have waited 10 years for their name to come up in the lottery to get a tag have donated them.

If you know of a child who has an interest in hunting or fishing and hasn’t had the opportunity due to accessibility issues such as the child uses a wheelchair and you aren’t sure how they could get on a boat or out in the woods to hunt- contact this organization to see if they are near you. They have the experience, the equipment and the heart to help! Way to go USSA!