Momma Monday: 31 for 21: Day 19 The best thing about Down syndrome…

The Best

The Best

…is the community surrounding and holding it up. I often found myself shying away from other mommies stories about their “amazing” kids when Zuzu was a newborn. Don’t get me wrong, I am over-the-moon proud of each and every one of my girl’s accomplishments. But there frequently seemed to be a “show and tell” or “lookee me” quality to the way other mothers would talk about their children. They so seem to think that their child’s accomplishments are a clear reflection on their parently prowess. At least that is how it came across to me. Everyone should be proud, but it often has felt like another parents level of interest in if Zuzu is talking or walking, or sleeping or pooping was in direct proportion to their need for an opener to tell me about their little darlings steps, words, Zzzzz or poo-poos. It often has felt like their inquiries into my child’s well being were really just a springboard for their own bragfest.

With The Quail, peoples’ inquiries don’t hold that feel. They seem more earnest, thrilled and curious. The optimism I’ve observed and felt about parenting since this dear Quail has come into my world is awesome. I would have expected it to be the other way around if I had to guess or anticipate what it would be like to talk about my daughter that has Ds’s accomplishments. It is such a pleasant surprise. If she didn’t have this diagnosis these people wouldn’t be in my life and I might have just gone on feeling shy and like it was arrogant to brag so freely.

Although on second thought, maybe the community’s spirit and optimism is the second best thing about Down syndrome; since I’m pretty sure The Quail herself is the best thing.

Momma Monday- Momma’s Momma

Momma's Girls May 2008

Momma's Girls May 2008

Just thinking about my family of girls. Sadly; I live far away from my family of origin. We are all scattered across these lovely states. I’m grateful for air travel that at least makes visiting a little more feasible. This is my mom, my Zuzu and my two sisters- the girls’ Auntie Ebbie and Auntie Shell. I’m the baby of the family. I can’t wait now that the Quail is here to get a chance to go back and redo this portrait with all of my girls.

Growing up I spent a lot of time at my mother’s knee. My memories are peppered with scents and sounds. Playing and reading and cuddling up to watch The Muppet Show, Sesame Street or a christmas special. Dancing in the dining room to records on the stereo. Mom brushing my hair, rubbing my feet, baking cookies, watching me swim, holding my hand, telling me about my family, reading stories or just getting ready for the day.

I appreciate Mom’s character and determination over the years. Being a Momma now myself sends my appreciation to a whole new level. Life is never easy, life just is. It is  what you make of it. That’s what I’ve learned. I look at my girls now and I hope I am able to instill a sentimental memory or two into their psyche. I hope they think of me with the same deep loving thoughts and feelings as I do my own. I hope when something happens they want to tell me about it and that they feel safe doing so.

We are all busy Momma’s. There are days when we know we did our best and there are days we wish we could do over and maybe, just a little better. We wish we were more present when our child laughed, more comforting when they cried, less annoyed when they asked the same question for the thousandth time. There are lots of ways to live our lives and its best we focus on what we can do best each day rather than what someone else, somewhere else said we should have done. I know my Mom is there for me and strove to do her best for all of us. I hope my own children are able to say the same about me one day.

31 for 21, Day 12 Take a walk around the neighborhood!

Buddies

Buddies

I headed over to Unringing the Bell for a little inspiration for todays 31 for 21 post. I figured I would go read what the other family’s were up to and see if I had anything similar to add. Well I didn’t get very far. The mere fact that 116 other families are participating in this challenge left me grinning ear to ear!

I also will go take a stroll around the blog-o-sphere to get a small glimpse into just what life in a family that is touched by Down syndrome has in store-

Come along with me- walking is always better with a Buddy!

1. Tricia
2. Sonia Brown
3. Mary
4. Kristin
5. Nora
6. Laurie
7. Michelle and Elliot
8. starrlife
9. Michelle Z
10. Cate
11. Maureen
12. Lisa
13. Kimberly
14. My name is Sarah
15. Stephanie @ Ralphcrew
16. RK
17. Braska
18. Maya
19. Snippets/ Michelle Adams
20. Deborah
21. Elizabeth
22. Jennie and Micah
23. Su Su
24. heidi marie
25. Meredith- Cornish Adoption Journey
26. Norris
27. Mindy
28. Heidi
29. Tracy
30. Wendy P
31. Michelle (Big Blueberry Eyes)
32. Jen
33. Emma Sage
34. Opposite Kids
35. Kacey
36. Kelly Z
37. Claudia
38. Traci W
39. Beverly
40. Mary 41. Anne
42. Regina
43. Lisa
44. Stephanie
45. Stevenson Family
46. nichole
47. Laura (Munck’s Quiver)
48. Marcy
49. Megan
50. Julie
51. Cathy
52. Amanda
53. Shelley
54. Christine
55. AZ Chapmen (Of life and times of a teenager with CP and NVLD)
56. One More, More than One
57. Debra R.
58. Rees’s Pieces
59. Kristen
60. Karly
61. Sandi M
62. Pam and Rhett!!!
63. JRS
64. Molly
65. Rachel
66. Ssejors
67. Meghan Dickinson
68. Grew by 2
69. jo
70. sasha
71. Prince Vince
72. Tina
73. Lianna
74. Karyn
75. Jessica (Raising Joey)
76. april
77. Jasmine
78. Tesney
79. Karen
80. cathy 81. Ali from Mexico
82. Art of Possibility
83. Hanzely Clan News
84. Ann
85. Angie
86. Courtney
87. Lori and Colleen
88. Cole
89. Ruby’s Mom
90. Anna W
91. Katie & Logan
92. Alice
93. narretto family
94. Bethany
95. Bethany
96. Chris
97. Kelli
98. rickismom- a teen’s mom
99. Grodansmamma
100. Jennifer (Life of the Bubelas)
101. Kelli
102. Michelle
103. Sari
104. Rosa
105. Liz (Our Version of Normal)
106. Amelie
107. Leslie
108. Beckee
109. Mandy
110. Chris
111. Liz
112. Amy (Mama Mason Mann)
113. Kristin Rose
114. Amy Silverman
115. Malins mamma
116. Michelle
117. Maggie Mae @ Walkonthe Happy Side

Momma Monday- Momma loves Momma Zen

Baby Buddha

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.

Momma Monday Family Goals

Family Fun

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 🙂

Momma Monday- Momma went to the Beach!

Botany Bay

Botany Bay

 

 

The Happy Little Family just returned from a lovely weekend at Edisto Island with The Gahan Family to the wonderful news that Auntie Deb is engaged! We are thrilled to welcome our new Uncle Greg to the family and look forward to meeting him this weekend!

 

We’ll get back on the bloggin track soon…baby beach pictures to come!

Momma Monday- Quail Alert

Quail Thoughts

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!