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I inadvertantly published post while I was trying to add these pics and other two recipes with Apricot preserves!! Hopefully I will master this blogging thing soon.

Coconut Shrimp

1 lb. raw shrimp

prepare a fish beer batter

grated coconut, on a plate

oil for frying

apricot sauce - saute a few cloves of chopped garlic in olive oil, add to a small bowl of apricot preserves, salt & pepper to taste.

Heat pan with oil or heat deep-fat fryer. Dip shrimp in batter, then roll in coconut, drop into oil, remove when golden brown, turning as much as needed while frying. Serve with rice, steamed vegetables and apricot sauce. This is so nice in the winter when you need a taste of the islands!

Chicken Curry

4 skinless, boneless chicken breasts, chopped

2 yellow onions, chopped

1 TBL butter

2 TBL flour

1 TBL curry powder

1 Cup chicken stock

1 TBL mango chutney or apricot sauce

1 TBL black current jelly or other dark jam/jelly

2 TBL golden raisins (plain raisins are fine also)

1 apple, chopped

rice

Saute chopped chicken breasts until done, set aside. In the same pan saute butter and onions until soft. Blend in flour and curry, saute for 1 minute. Add stock a little at a time, then bring to boiling point and simmer until sauce thickens. Stir in chutney and jelly, season with salt and pepper. Replace chicken in pan, stir up and cover & simmer gently for 30 minutes or until tender. Then stir in the raisins and apple, cook 5 minutes more. Serve with rice, a veg, and fruit (grapes are nice). This recipe is from my family in Wales, it's comfort food for me and reminds me of my time there - we eat it a lot during the winter. If you don't like curry, try this, it's not strong, just warm and flavorful! For kids that don't eat curry, set aside some plain chicken, apples, raisins & some veg with rice.

Lots of News and what you can do with a jar of Apricot preserves

I really should post more often after reading my last entry, so much has happened!

Jones:

-had another botox injection in July and will have his third next week. We are all very comfortable with the procedure now and absolutely LOVE the staff at the American Family Children's Hospital Sedation Clinic. We are in and out in two hours, with no real side effects. The botox has helped give him the confidence to push through the tightness to reach and try to move his arms/hands more. It loosens his hamstrings to help him gain stregthen in his legs.

-is cruising around in his gait trainer after some minor adjustments by the lady that works with his equipment. One day he even went all the way around the block, although had to be pushed a little bit. He loves being out with Owen and the neighborhood kids or just a quiet walk with Tom or I. Now that it's colder, I've been taking him to a quiet mall close by and he even likes to go in the stores with the walker. He likes to bang into things and reach up to touch clothes.

-has been working with a Communication Development Program using symbols to tell us what he wants. He loves it, when the boards come out, he throws his arm up in the air "I'm ready!" They are assessing him to see if a communication device is appropriate and if we could get the funding for it. In the meantime (and in addition to) we got an iPad (Tom won it through work) and Jones loves that thing, he gets so mad when I check my email on it.

- is going to a Storytime Preschool at the UW Speech Department. He attends Monday and Wednesday for an hour and a half. He loves it and is engaged the whole time! It's all boys somehow, only 3 on each day, he's the only one that attend both days. The other boys have Down Syndrome, except one who had brain damage in utero and has severe epilepsy. He is buddies with them all and loves his teachers. He is definitely very interested in talking and is making progress. He says "Hi" all day long and may say one other word during a day. He has said a lot of words once.

- feeding issues are going well. He is interested in a sippy cup but really likes me to get my finger wet and put it in his mouth. I do it to rinse his mouth after brushing teeth but now when we are out he likes to get a drink at the fountain or just out of a cup that way. He is eating more challenging foods now. Loves a peanut butter and jelly, grilled cheese and pastas. We still feeding him some Stage 3 baby foods when we go out to eat or are having a meal like steak & brussell sprouts that just aren't even appetizing to try to whiz up in the food processor. It's just easy for him. We are continuing trying to encourage him to self-feed, not making a ton of progress there but it's ok.

- motor skills are coming along, he wants to walk so badly! Crawling is definitely a challenge for him and sometimes he's not into it but we make time for it everyday. Tom and Owen getting down with him and making games out of it helps so much.

- he is a funny one. He loves to watch this ONE Baby Einstein DVD, On the Go and throws a fit if I try to expose him to a new one. Oh well, whatever makes him happy (and allows me to make a meal). Even more crazy is that it was Owen's most favorite too. He'll even watch it with Jones.

- his old PT retired and I am really excited about all the new ideas and follow throughs that the new Physical Therapist and I are working on already. She's really detailed and very resourceful. Sometimes a change can be good.

- in addiiton to all the new good stuff with PT, I'm looking into a lot of new therapies for Jones. Cranioscaral massage therapy, more Chiropractic (although I love our old Chiro, we are going to see another family friend who takes Jones' insurance), special needs swimming classes, a medical setting rehab PT to compliment Birth to Three PT.

Owen:

- is settled at his new school Van Hise. He's made friends, kept his old (one is silver and the other's gold).

- He just finished reading Because of Winn-Dixie in his reading group (that he got moved out of temporarily but is back in now - long, boring story) and will be starting a new book this week.

- I will be starting to volunteer in the class this week so looking forward to seeing what is going on and helping.

- Will be taking a clay art class and will start Basketball in January.

- He is starting to have more responsibilities around the house, which has met with much whining in a language we can only describe as demonic BUT, he does it.

- continues to play mostly with Legos.

- is getting big! He even does things now like take a shower and wash his hair by himself. I still can't believe that one.

- he had been coming in our bed in the middle of the night since getting bunk beds. We switched him back to a queen bed and that has improved. Although the yesterday he came in about 5 am, and woke us up at our normal time (7:15 am) by saying his sleep "This is California." LOL.

- he is becoming very quick-witted. Owen and I went to Bed, Bath and Beyond with Brett to help him pick out a new bedskirt. We were joking and Owen said "Where are we? Bed, Bath and Brett?" We are still chuckling, he loves to laugh.

The Ames Street Cafe:

- although I'm still a bit depressed about my failed attempt at Coq au Vin, on the bright side, two ladies asked me for the recipe for a tart I made for a Baby Shower. It is easy, beautiful and a nice change from the standard (yet marvelous) Apple Pie. As Annoying Orange says, "Try It!"

French Apple Tart

Pastry Dough -

1 stick cold unsalted butter, cut in small cubes

1 1/4 cup flour

1/4 tsp salt

2 to 4 TBL ice water

Filling -

6 apples, peeled, cored, halved and sliced thin

1/4 cup sugar

1/2 stick cold unsalted butter, cut in small cubes

1/2 cup apricot preserves, heated and strained

Preheat oven to 375. Blend flour, salt & butter with a pastry cutter or your hands until mix resembles coarse meal. Drizzle 2 tablespoons of the ice water and gently stir with a fork, adding water until it comes together. On a lightly floured surface, rollout dough to fit a 10 inch fluted tart pan with a removable rim. Arrange the apples in the pastry shell. Sprinkle the sugar on top of the apples, dot with the butter. Bake for 45 min, or until the crust is cooked through and the apples are golden. Brush with the heated, strained apricot jam while the tart is still hot. Serve with vanilla ice cream.

Botox and Beyond

It's been since St. Patrick's Day that Jones had his first Botox injections. Now that I have a bit of perspective, it was a good time. I was ready to either throw up, pass out or have an anxiey attack...simply walking into the Children's Hospital is upsetting enough but the smell in the treatment rooms and all the equipment just brought back a lot of unpleasant thoughts...and I like hospitals! The nurses and Dr. McLeish (Jones' Rehab Dr.) were all so great, and of course Tom was very supportive. Jones handled everything like a pro. We did decide that a light sedative would be best for him. I totally needed it more than he did!!! It made him floppy, drunk-like, very kissy and giggly. We all joked that green beer would not be good for him. He got 17 shots of Botox, in his hamstrings, pecs, biceps, elbow area and palm of the hand. He hardly seemed to notice. We were fine to go home about an hour afterwards. After it all, I was again reminded that God brings us through all things just fine. I was all worked up and it went so smoothly - I was seriously disappointed in my faith but, I'm working on it. So, we (and other people) have definitely noticed his arms & hands and legs are a lot looser, he's using them more. We are stretching him all the time so that his muscles will lengthen and be freer to move for him. The idea behind the Botox is that for adults and children with high-tone, it relaxs the tight muscles so that the weaker muscles have a chance to strenghten and overcompensate. We've seen him reach for more objects, it's been most apparent in his hands.

The chiropractor I've seen seeing wanted to see Jones so I took him in for evaluation, that ended up in an adjustment. Immediately Jones had even more of a decrease in tone and just seems more alert - even by neighbor's account?!?! Even more amazing is that after his nap that day he started to do things with his arms he's never done before, such as when on his tummy, he was able to pull his left arm up - a critical ability to push up to sitting and other positioning. He is giving hugs, playing with toys in new and fabulous ways. We are so encouraged.

He has also started wearing AFO's (ankle foot orthodics = lower leg braces) and a neoprene trunk brace. He looks like he's going scuba diving with the trunk brace on! Both really give him a lot of stability when sitting and walking. Although it's sometimes hard to see him with all these gadgets - glasses, thumb splits, trunk brace and AFO's...I just remember that they are all helping him and we are thankful he's at a developmental place that they can help him. He is a super trooper through it all, smiling and laughing.

That's the other thing...having to say "No, Jones!" He wants to be naughty when he can. I had to tell him not to stomp on Gretel (my Mom's dog) after he kept doing it and doing it. I then realized he has never attempted to step on Nina (our dog). It's crazy to think that somehow he's figured out that Gretel can handle it (probably likes it) and Nina cannot, very preceptive! He's a joker and loves to get me all excited by pulling my hair, hitting my face and now his new trick is to push dishes close to or even off the table to get me to gasp...see the YouTube video here,

One last note. Tom and I went to a City-Wide Worship Event last where I saw an old family friend who prayed with me about Jones. He prayed that God is the Name above all names, above Cerebral Palsy and another diagnoses or ailments. I had never thought in those terms about God's name and am so touched by the incredibly deep dimensions of God and how we will never be able to see him in his true form, but keep getting closer as we approach him.

I'm just reading over this post as I wrote it awhile ago and just didn't get around to sending it. A few updates : The trunk brace was causing some acid reflux so we haven't been using it much. Next week we will be starting to work with the Waisman Center's Communication Development Program, to help Jones' speech. Our neighbor runs the program and has asked us if we would consent to being videotaped for a webinar they will use to educate all the Birth to Three Speech Therapists in the state. If I'm able to get the link to it once complete I will share it.

Walking Wings & My First Protest - Art (PHOTOS)

I'm just learning how to upload photos...the art scan is too big, I'll try to figure it out later.

Walking Wings & My First Protest - Art

Thanks to everyone for their positive support in writing this blog! It feels good to have a place to share. I hope it feels intimate enough. We care so much about each one of you. So, anyway, here is the scoop this week!!

Buoyed by online reviews and more importantly, by Jones' PT, I went to Babies R Us (way over on the East Side so many rounds of Wheels on the Bus were sung) to buy this new device called Walking Wings. As you can see from the photos it's a supportive harness that helps children walk without having to be held by their hands - it's definitely not a leash, it's for emerging walkers. Although it's not specifically intended for children with special needs,t in Jones' case (and other CP kids from reviews) it works for him too. It went so well on the first day!! He instantly felt freed to explore in a different way than by having me support him. It allows him to totally direct his path. Unfortunately, he mostly wanted to stomp and kick Owen's neatly arranged Matchbox race that was in progress. Poor O had an look of indignation but then realized the comedy and victory in it. It's so funny, Jones has this cheeky little side to him that comes out when he can physically do something. It reminds me that he is just a normal 17 month old trickster just trying to act out! As a sidenote, I don't think I will be seeing my chiro as much anymore. Thank you Dr. Krantz, you rock!

I'm sure you have all heard about the protest going on down at the Capitol. Ginny (Mike Langer's wife - well, she's mine friend now!!) and I took Owen, Jones and Leo down there last week. I wanted Owen to see why school was cancelled, it ended up being four days off. It's hard to explain unions and collective bargaining to a six year old but, I think he gets some of it. Now that it's evolved into the Dems leaving the state, I'm kinda over talking to him about it. He often chants "Take a walk Walker!" and "Kill the Bill!" He brought me this fantastic drawing of "me in all the protest signs". I just love his art, as all parents do. I'm so moved by his creative mind expressing itself through drawings. I'm so impressed by him in so many ways but through his art I'm able to view the world as he sees it, and it's beautiful.

Some of you have asked what the Ames Street Cafe is - it is our kitchen. Brett started saying it that when he would call to find out what Tom was cooking for dinner, to see if he wanted to come over or not. Thus the Ames Street Cafe was born - we also call it the Ames Street Grill when Tom is firing it up.

Tonight's Special : Tom is in Las Vegas so it's a heat up the oven kinda night or TGFTJ, Thank Goodness for Trader Joe's Fish Sticks and Potato Wedges. We serve them with whole, raw carrot sticks and organic D'Anjou pears slices. For dessert we had Chocolate Peanut Butter and Red Velvet cupcakes from Barnes & Noble Cafe thanks to Aunt Libby.

Braced Up & Level 16

If any of you are out of the loop, a quick catch up - Jones had a difficult birth, it was precipitous, with meconium present, and the cord was wrapped around his neck so that he was not breathing. He was resuscitated and sent to the NICU. Once there he began having seizures, that were then controlled and stopped, he has been seizure-free since. We also found out that he had a lack of oxygen sometime before birth, either from the cord being compromised or placental detachment. When he was eleven months old he was diagnosed with moderate Cerebral Palsy - thus begins our journey! He is 17 months old now and doing well with lots of therapies and lots of hope that many milestones will be achieved :)

We had an appointment with Jones' Rehabilitation Doctor this week. She had many new suggestions to help improve his tone and mobility. He was fitted for a trunk brace, which like his thumb splits, will be neoprene with Velcro closures. This brace will help him sit up straighter so he can hopefully use his arms/hands more. Underneath the brace, he will wear two strips of kiniesiotape placed on either side of his spine, all the way up his back. The tape is like a muscle prompt, crazy! In several weeks he will receive lower leg braces, I'm not sure how they will look yet. These braces will help align his leg and feet muscles in the proper position for walking.

The most challenging aspect of the Dr.'s advice is to begin Botox injections which will decrease the high tone in Jones' muscles. We are pretty sure that we will do it, we just need a little time to mull it over. There are two major benefits, one is that it will help reduce the risk that confractures of the muscle and bone will form, causing irrevisible deformaties. The other is obviously, with decreased tone, he can move more. So more on that later...

Owen's teacher just retested him at reading level 16. Although I don't know what that specifically means, it's good! His whole reading group is now at a 15/16. He is still in a cluster group, which are students from different classrooms of the same reading level. It was started because Owen didn't have any similar readers in his class. For all of the last semester he was the highest level reader in the Kindergarten but now his cluster group has caught up, which is great. He is playing basketball and is fast! He has no idea what to do with the ball but, they are all learning. Offense and defensive are difficult concepts for 6 year olds to master.

Ames Street Cafe Special - Spinach burritos with grass-fed beef, topped with Organic Valley sour cream and a side of guacomole.

Reviews: "I don't like the green stuff. What is it this time, cilantro?"

First Post...

This is the first post so I'm not even sure what I want to write yet!!! I guess that it's been hard to keep everyone updated on the happenings with Jones' progress and the rest of our family. So, I thought maybe a blog might be a good way to keep our friends and family in the loop. So, here goes! I'll post a whole history of where we have been and where we are now.

Cheers to this new adventure!!

-Trina