Monday, October 26, 2009
Making the Most of Every Opportunity
Saturday, October 17, 2009
Jordan's New Sling
I wore Jordan in a sling exactly like this for more than 2 1/2 years since she couldn't walk much of the time. It was the best gift ever. Mine was made by Jenny Woodward who also jumped on the hospital gown ministry right away. Her blog is http://www.doctrineanddiapers.blogspot.com/ and you can see her projects under the craft link on her page.
I copied her pattern a year ago or so and made a smaller version for Reese Woodward and have since made another one for a neighbor, Cassidy and also matching slings for Jordan and her little girlfriend, Reagan (her 3rd birthday is Tuesday).
I used a coupon so each sling cost me less than $5.00!
Here's a picture of Reagan and Jordan
Wednesday, September 23, 2009
Audiometry
Saturday, September 12, 2009
Quick Update on JJ's Progress
I had a few minutes here on a Saturday while Shannon is at the men's retreat and I'm a total vegetable on the couch with the kids watching a movie - after a morning of cartoons (yes, I'm a bad mom) so I thought I'd post a quick update.
September is a VERY busy month for us as I start working two days a week (boo hoo!), ministry starts up at church for us and the kids, Shannon starts school again (and works full time with our Real Estate Mortgage business), Noah starts his one morning a week preschool again, Jordan continues with therapy as usual and we go through the crazy process of Special Education testing through the local school district. Uggg. Today is a much deserved morning on the couch with the kids. I'm loving it!
As for Jordan's update - she is doing very, very well and it's great to see. This month she is being assessed in the areas of gross motor, fine motor, speech/language, pre-academic and cognitive skills with our local school district. We aren't expecting her qualify for services in any area, thankfully, but we want to be sure and we want to know for sure that she is closing the gap developmentally and that her medical issues haven't caused delays that need to be worked on. Next month we are expecting her to only have therapy one morning a week and no surgeries scheduled on the horizon for another 2 or 3 years. I can't imagine! She will be three this month which a whole blog post in itself.
A big milestone recently is her ability to go up and down a few stairs without assistance. It's so exciting. She is physically becoming more and more independent all the time. She's beginning to be able to hang on monkey bars for a couple seconds (showing increased hand strength and flexibility), she is beginning to learn to use special scissors to cut paper, she can draw circles and lines on paper, she is only wearing her brace part-time now and is graduating to a smaller brace in a week or so. She's just doing so great and it's fun to see. I put a video on here of her climbing the stairs in front of our house. We've been working toward this since she began walking after her surgery earlier this year.
I will be posting more pictures soon and then of course her birthday post - she turns three on September 30th and we're heading to Disneyland with our "princess" for a day of celebration. Yes she will be in costume - princess of course.
Friday, August 21, 2009
Refurbishing

So in the spirit of refurbishing I've recently taken up arms against stained clothes. I can't stand to throw away cute clothes and Jordan is CONSTANTLY staining her clothes. We jokingly call her Pig Pen (Peanuts cartoon) as she is constantly dirty and dragging her even dirtier blanket around with her.Bleaching seems to be the quickest and easiest but on patterned shirts a quick sewing on of a picture or shape works well. You can always look through other stained clothes to find cute pictures or designs and save yourself money on fabric too. Save old shirts that aren't salvageable and sew buttons on various stained spots, sew shapes or patches onto shirts too. Patches seem like they'd be too heavy for lightweight fabric but making your own from any cotton material works well too.

Another clothing issue that is particular to our family is clothing missing sleeves and legs.
In this picture Jordan has on my all-time favorite shirt. Like many others during one of her months in a cast we cut one arm short so it could fit. Sadly over the past couple of years I've thrown away so many great pants and shirts because they've had a leg or sleeve cut off. Tonight I figured out how to sew a stretch seam with my machine. I just cut the other arm short then sewed matching stretch seams and voila! a new shirt.
Stay tuned for a really fun, exciting post on shoes! I met with Jordan's foot surgeon and we have good news...and of course great pictures.
Wednesday, August 12, 2009
Conflicting Desires
I thank you, special needs parents, for your tireless attempts to wrestle with your own conflicting desires. On the one hand, you want the best possible support for your child in their battle, finding the best schools, the top techniques, and the latest research to justify special treatment. On the other hand, you strive to normalize your child and his surroundings, never allowing your child's special needs to rob them from the joys of "normal" life, nor excuse them from the painful lessons that life has for all of us. Those of us without special needs kids face this same internal battle, wanting to both protect our kids from life's dangers and yet expose our kids to life's lessons. For showing me how to fight this battle on both ends, equally holding up both protection and exposure as valuable, I thank you.
Special Needs, Special Love
Hal Runkel, LMFT
I can relate so well to this author's description of "conflicting desires" for children with challenges. As put so clearly above, we want the best of every opportunity for Jordan which often means exhausting effort fighting insurance companies, persuading doctors, constant therapy, financial strain as a result of exorbitant medical costs and equipment, etc, etc. At the same time we do indeed want her to live a “normal” life of park dates, quiet family time, having friends, swim classes, dance classes, and other fun things typical kids do.
Even beyond this it brings to mind something I was sharing with a mom at work just today. This is a mom whose son was born with microtia and atresia (malformation of the ear). He is a child on my caseload and when he’s about six he will have a series of surgeries to create an ear. She was concerned with how to respond to various aspects of surgeries in regard to her son having the surgery and also his brother. I was able to share with her that God has absolutely allowed this event/trial in her son’s life and that, as a believer, He will sustain her and provide her with everything she needs. I told her about Jordan’s insanity at doctor’s offices that came as a result of surgeries and that during her times of fear and worry I would explain to her that we are not to be “anxious in anything but in everything by prayer and petition present our requests to God and the peace of God which surpasses all understanding will guard our hearts and minds in Christ Jesus.” (Phil 4) I would pray with Jordan before, during and after doctor’s visits and eventually she would ask for prayer. After one big surgery she was fearful and in pain and asked for me to pray with her every five minutes or so. Here is where the “conflicting desires” come in (as the author talked about above). I’m sad for her trials but at the same time I fully understand that without them she would not be forced to lean on the Lord for comfort. Although she is not saved she already has, at two years old, an intellectual understanding of God as comforter, healer, provider. For all of that I’m thankful for her affliction. Her challenges have given me an opportunity to demonstrate what it means (in good times and difficult) to live for Christ and to fully trust in God’s sovereignty (if He were not indeed loving He would never have sent His own son to die on our behalf!).
As the author talks about two “conflicting desires” of wanting to protect our children yet expose them I’m able to say that by God’s grace I am thankful for what He has exposed Jordan to because of what it offers her and the rest of our family as well as those involved. I feel for her when she’s in pain or when common daily tasks are a struggle but I’m also thankful for so many rich experiences that directly send her to our Heavenly Father. When I think of it from this perspective it's really no conflict at all.
Friday, July 24, 2009
Homemade Ice Cream in the Summer!
I am so excited to post this -
When I was a kid summers were spent at my grandparents house (that they built themselves when my dad was young) in the swimming pool (that they put in themselves), and ocassionally eating ice cream (that my grandpa made himself). I especially remember many a 4th of July with all of my cousins and family swimming, jumping off the diving board, eating in the backyard then lighting fireworks and eating homemade peach ice cream. Shannon, the kids and I were in Bakersfield recently visiting the Woodwards and we had delicious homemade vanilla ice cream (thanks Jen Garcia!!!). It brought back such memories! We went to visit my family in Palmdale on our way home and I mentioned to my dad that I'd love to have Grandma and Grandpa's old ice cream maker. If you read back through the blog you'll see that my grandpa died a year ago last April (on Noah's birthday). Since then my dad has asked me if there is anything special I'd like of my grandpas. I asked him if I could have it and we set out searching for it. If you look at the pictures from about a year ago on the blog you'll see that this wouldn't be easy. We searched the service porch, the garage and finally out to the barn we went and finally found it covered in dust but wrapped in it's original box. My grandpa never threw anything out so we figured it was there somewhere.
I have been so busy since then that today was the only time I had to possibly do it. Shannon's mom was here for dinner so she helped...
Tuesday, July 21, 2009
Amniotic Band Syndrome as Illustrated by a Cucumber
Craniofacial Appt Today
Updates and Progress
Wednesday, July 01, 2009
Our first gowns!!!
Go to Jennifer's blog to see her post on this (worth reading!) and more pictures and details.
http://doctrineanddiapers.blogspot.com/2009/06/gowns-are-on-their-way.html
This has me beyond excited!
A mom I whose daughter I see when I work told me about her own daughter being blessed by similar dresses while she was in the hospital for an extended stay. Some women got together and donated a few for her daughter in Ohio. I thought that I might as well try to duplicate the process here at a local hospital where Jordan has spent time (CHOC, UC Irvine and UCLA).

Here is Jordan the first night in a gown.

And here she is with nothing on but her bows, her best friend and a diaper. :)
If you want to read back through these posts you can find them on the right hand column of the my main blog page - This was October 2007.
Thank you everyone!
Anyone else interested please post here and stay tuned for a pattern! Forward this to anyone you know who sews!
Monday, June 29, 2009
My Two Fish
My mom wanted to put Jordan is swim class along with Noah but I was concerned with her sensory issues (vestibular problems) and wondered how it would go anyway with her foot and just her being behind in her gross motor skills in general. The teacher offered to see Jordan in the evening when she sees her special needs kids but after talking more she felt Jordan wasn't ready yet. She told me to start putting her in the shower, getting her face/head wet and just getting her more used to the water. She also said that she'd meet with us one time as a freebie to help us with ideas to work with her on our own to prepare for swimming.
I took her tonight and of course she clung to me and screamed when I let her go but it really wasn't that bad. As soon as Ms. Connie took her and was really firm with her she did very well. Ms. Connie actually got her in an inner tube kicking her legs by herself and she really does kick pretty well. She also got her underwater twice before she really freaked out but Connie kept putting her under until she calmed down enough to ask to please be taken to the steps. She also got her on her back floating with only one hand on the back of Jordan's head. When I tried to do those things with her it was really bad. I was so nervous and tense and Jordan wouldn't do it, she kept screaming and I really just wanted to watch Connie work with her as I sat in the chair. Instead, Connie says she wants to work with me at least another time before I do anything with Jordan in the pool by myself. I was totally surprised by my response to her fear and her screaming. Usually I think I do really well when she is scared, screaming, and everything else that we've had to work through with her but she looked so tiny in the pool and was so scared. Connie says that this is the summer we need to work with her on swimming because she's getting older, she's cognitively able to do it and responds like a typical toddler to the water (scared but not dealing with an abnormal reaction like some of her special needs kids with autism etc.) and if we wait she'll just become more afraid.
I'll be meeting with Connie again Thursday at 5:00 to work on this again and then she said I can get in the pool one week from Thursday possibly during Noah's class so she can help me a bit just with verbal direction.
Okay so enough of this long post. I wish I had pictures but I was in the water so I'll try to get some soon.
Wednesday, June 24, 2009
Yay Noah!!!!!!!!!!
Sunday, June 21, 2009
More pictures from San Diego...see previous post
San Diego
So cute!
This boy loves the water!!!
Petting Zoo at the Fair
Jordan thought all the pigs were named Wilbur.

