Our first gowns!!!

Here is a precious hospital gown made with care and prayer by Jennifer Woodward.

You can see the post below but a week or so ago I posted a request for anyone who could sew to begin thinking and praying about making cute hospital gowns for babies and toddlers who are in the hospital. They would be particularly for high level care kids who have too many wires, tubes, etc to be able to wear their own clothes and who are in the hospital for an extended stay.
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).

The challenge for me is that I'm a beginning seamstress and due to Jordan's care etc. I don't have much time to get this started. Honestly I was a bit discouraged thinking about how many weeks it would be until I could spend time finding and working on a pattern, trying to figure it out so that I could send it out to other women who sew who have offered to help.

Tonight I got a call that Jennifer already dropped a few off at a friend's house for me!

I visted her blog and saw so many comments by other women who also want to help!!

I am so encouraged and so moved by everyone's enthusiasm and care.

I am beginning to pray about the hospital to contact for donations. Originally I assumed it would be CHOC (Children's Hospital Orange County) but I've been really drawn to UCLA Medical Center since first thinking about this.

Some of you don't know that Jordan spent nearly a week in the PICU there on a ventilator, sedated with tubes all over and all I wanted was my baby back - the way I knew her (in her own clothes, in her own bed, awake, etc.). In an effort to share the true Jordan with her caregivers I hung pictures of her, put bows in her hair and laid "Piggy" next to her along with her quilt that was handmade from our church's quilting ministry that had an angel pin given to Jordan by her Great Aunt BJ. I hung pictures of Noah along with his cards for her, all to remind myself and the staff that this patient was not our girl, not the girl we know. There were families there whose children would not be going home or who were facing months of hospitalization who could've benefitted even more.

All this to say that the bows, the blanket, the pictures and Piggy really weren't needed at UCLA because it is a place where the staff truly cares! I drive up to that hospital and I have a feeling of comfort and love for them. We went back to visit after we were released and they were so excited to see Jordan. One year later we were back for another surgery and I ran into some of the PICU staff in the cafeteria and they recognized us! They were so sweet and so kind. In thinking back to our time there I really feel I'd like to donate the gowns to them with a special letter thanking them. I'll keep praying and any of you who sew start sewing! I'll get the pattern from Jennifer (hopefully) and let you all know where you can find it or duplicate it.

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!

My Two Fish

I posted that Noah started swim lessons last week and he's doing so much better every day. Saturday at the city pool he jumped off the edge into the water, made his way to the wall underwater then pulled himself up back out of the pool - more times than I can count. He's super excited about swimming so we'll see how it goes tomorrow at class again.

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.

Yay Noah!!!!!!!!!!

What a huge week it's been at our house and it's only Wednesday!!
Noah had his first swim lesson yesterday and today he rode a bike with no training wheels!
Yay! What a big boy we have!

More pictures from San Diego...see previous post

These posts always come up in the wrong order - I added more pictures from San Diego - scroll down for the post about our trip.

Mission Bay Playground
Shamu!!!!

I love this picture. She is SUCH a happy girl!!

The Fam

Jordan loves talking about bubble gum. Here she just said, "Wanna see me blow a BIIIG bubble?" She does this all the time and it's a crack up.

San Diego

So cute!
This boy loves the water!!!

Petting Zoo at the Fair

Jordan thought all the pigs were named Wilbur.

This was a fun area at the fair where people could hear themselves playing instruments.

Noah loved it!

We're back from our San Diego vacation and wanted to post some fun pictures.

We had credit card points that needed to be used so we booked a last minute trip to La Jolla for the family. Shannon was so sweet and planned the entire trip for us. He even researched local things for us to do while down there.

Shan got to surf, I got to run, we played by the pool (I napped!), went to the San Diego County Fair to see the animals and eat all kinds of weird fried things, we went to Sea World, and then spent a little time playing near Mission Bay. It was the best! We came home refreshed and rested and more than a little thankful for our time away.

Hospital Clothes

This one is blurry but you can see the stitching okay.

Here's the front.

The back with buttons.

I sent an email out to my friends and family who sew asking for them to consider making hospital "dresses" for babies who need to be hospitalized. I was talking to a mom today who often spends weeks at a time in the hospital with her 2 year old (days younger than Jordan). Someone made her a few dresses for her to wear rather than hospital gowns.

It was so touching to her and I can understand why.

When your child is in the hospital hooked up to machines and wires, wearing hospital issue (way to big) gowns it's too easy to forget what they are without all of it. So quickly parents and others forget to think of them in all their personality. It's easy for doctors to see this assembly line of patients when they do their rounds and to think only of the case. My favorite thing has always been putting Jordan's own clothes on her when she's in the hospital but it's often way too challenging with everything she's hooked up to as well as large casts and bandages.

I remember when she was in PICU for five days hooked up to a respirator, a central line, an IV, a pulse oximeter, a cast on every limb except one and bandages on her face. I HAD to at least brush her hair and put a cute bown in it. It didn't matter that she was sleeping through it.

I hung pictures of her up on her bed so the staff would see her the way she is - laughing, being silly, playing, etc. Fun, cute, thoughtful dresses would've made my week.

These dresses would be perfect. They are a similar concept - open in the back with a button or two and a long gown type thing that can give medical staff easy access to the baby/toddler. BUT they are SO cute! There are so many cute, colorful fabrics and styles that can be used with these...ruffles, pleats, embroidery, fun stitching, sports themes for boys, or cars and trains. The possibilities are endless for you creative types.

My sewing skills are limited so I need help. I need someone who is good at this who would be willing to come to my house with her sewing machine (or have me to her house) with a few other women who are interested so we can figure this out (unless you all can figure it out on your own).

We all need to make two - yes just two.

Then we can deliver them with cards to families at CHOC (Children's Hospital Orange County) or my personal favorite UCLA Children's where Jordan has spent many, many days.

I also envision somehow putting a bible verse in them...perhaps low cost tags that can have writing on them (my friend did this for a baby blanket she crocheted for Noah) and of course the cards of encouragement can use scripture.

Seriously friends I'm so excited about this but I can't do it alone.

I need creative seamstresses to add their own flair.

I need spatially gifted seamstresses who can help with the pattern (very simple!).

If you don't sew you can purchase fabric or send money for it.

We can find so many cute patterns in clearance racks for next to nothing or we can buy sheets that are on clearance with cute patterns or get Ikea fabric...the sky's the limit.

Post on here if you're interested - many of you have received an email about it and I'm looking forward to seeing who is interested.

"Not me!" Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

After reading through a fellow bloggers site for a few months I finally feel I have a legitimate "Not me!" Monday post that is worthy of linking to her blog. Recently my 2 year old did not have her 8th surgery and I most certainly did not plan a day at Disneyland for myself and the kids following said surgery. After a dely in the start of surgery I did not get antsy because our Disney day was waiting. While waking up from her surgery and taking a bit too long to be roused from the anesthesia I most certainly did not wait until the nurse left so that I could jostle her awake (clearly she thought she was going to take a leisurely afternoon nap while my son and I made playdough snowmen and drank juice). Once she woke up I did not quietly bribe her with the Dumbo ride in order to get her to stop crying so we could check out quickly (had I done that it would explain that fact that she instantly stopped crying but since I did NOT do that it must have been that she was as ready to break out as I was). As we were packing to leave I thought about our doctor kit at home that we've used to make her less freaked out by such frequent surgeries and doctors but don't think for a second that I am the kind of person who would enlist a nurse (whose identity I will keep secret) to help me slip the medical supplies they would have to throw away into my large and very full hospital issue plastic bag...oxygen mask, blood pressure cuff, surgical cap, etc....If and I say IF I had done all of these things I would never have buckled the poor post op two year old into my Ergo carrier as we spent the afternoon in 85 degree weather in search of Donald Duck and I most certainly wouldn't fill her with cotton candy and fantastic rides at Disneyland and California Adventure and I wouldn't think of pushing my four year old son in the stroller without a shirt because he peed all over it the minute we got into the park. I love my kids way too much to do such insane things in an effort to creat good fond memories to replace the hard ones we endure on a regular basis.

Pin Removal Surgery Update

Today went really well. We really had such a great day. We took Jordan to speech this morning then headed up to UCI. While we were waiting to go back we played with a beautiful black lab (a hospital therapy dog) then when we went back all the nurses and anasthesiologists recognized us from the last surgery. It was really fun. We chatted and the kids hung out. Jordan barely cried (usually everyone on the floor knows we're coming because she's hysterical). She didn't even really cry much when they took her.
We got her ready then gave her Verced (spelling) to mellow her out and the surgery only took 20 minutes or so. Dr. Jones cut an opening then pulled the pin out (yes with pliers) and stitched it up. Simple as that. When we went back to recovery (Noah and I - Shan couldn't come today due to work) she was asleep for a long time with a little oxygen mask on. Noah seemed a bit unnerved and kept saying he didn't want me to leave him alone with her. He was rubbing her cheek and talking softly to her. After a while I figured she was over the medicine and simply napping and I didn't want to spend the afternoon hanging around while she got her beauty sleep. I shook her a bit and she woke up. She cried quite a bit this time afterward. She was kind of angry too which is all just a result of the anasthesia. After a while I told her it was enough crying that she needed to stop crying and start getting ready to go (I was a bit stern). She stopped crying instantly then slyly looked over at the nurse and smiled this funny smile. We all cracked up. She is so dramatic. It's hilarious.
After we left there we went to Disneyland - yes Disneyland an hour after her surgery. Noah was reminded of Ephesians 6:1-? "Children obey your parents in the Lord for this is right. This is the first commandment with a promise THAT THINGS WILL GO WELL WITH YOU and you will live a long life on the Earth." His behavior was impeccable while at the hospital. Even being nit-picky I can't find even one time he disobeyed or was not honoring or respectful so as a result things went well for him. We had a great time at Disneyland and then headed to church later for a dinner and dessert with our bible study group.
So all is well here tonight. Jordan is in no pain, not even on Tylenol. Praise God!
I still can't find my camera charger so this was the first surgery we've had with no pictures! Sad!!!! Therefore I have no pics to post. I'm going to dig around this weekend to find it and get back in the game.

Surgery #7

I wish I had pictures to post with this but Shannon has the laptop at his parents tonight so a quick update will have to do.
We went up to Orange (UC Irvine) to do the pre op and on the way up there I was told that Dr. Jones wants to do the pin removal as a surgery rather than in the office. We scheduled it for tomorrow at 1:00. Poor Jordan can't eat or drink anything before the surgery which means she's going to be pretty sad. It should be a really quick one. They'll give her Verced (spelling?) to mellow her out as usual then she'll only be in there for a very short time. All he has to do is give a local pain killer (like at the dentist) then make a little cut and pull the pin out. I'm not even sure if he'll put in any stitches.
Earlier this week I had a pretty bad attitude about it (time, copay cost of surgery versus office visit, stress on her, sedation, etc.) but thankfully I had recently had a conversation with my friend, Sarah, about how we should never complain. If we love God and believe in His promise to us (as those with a right relationship with Him through Christ's death and resurrection) then why would we ever complain?? All things are within God's reach and all divinely appointed or permitted. I am going to do my part to trust in God and then also try to make it a fun day. God has so graciously given me a perspective of joy and thankfulness regarding surgeries. Honestly I actually enjoy surgery day as much as possible and look forward to special "fun" time with Noah while we wait and undivided time with Jordan for the hours in pre-op leading up to it then the fact that she lets me hold her the rest of the day afterward is nice too. I feel bad for her if she's in pain but thankfully modern medicine has made it bearable. The worst part at this point is her anxiety about it. If I tell her ahead of time she gets weepy and distracted and really talks about it so much. I just try to see it as an opportunity to pray with her and reminder her of Philippians 4 where we're instructed to "not be anxious about anything but in everything by prayer and petition presents our requests to God." When we do that "the peace of God which surpasses all understanding will guard our hearts and minds in Christ Jesus."
Thanks for checking in - I hope to post pictures soon...
One last quick prayer request:
My mom met a man who puts together motivation videos for Kyle Maynard. Kyle was born without limbs but he has overcome major obstacles. The producer has followed our blog and wants to include photos and video of Jordan in their next movie. He's waiting so patiently for me to get pictures and video to him but in the past couple months Shannon's computer crashed losing thousands of pictures and video clips, my cd burner died on my computer which has a few pictures, my computer screen died last week along with my mouse, my camera charger is missing and I am struggling to get the video and pictures together for him on a dvd. I'm tempted to give up but it seems to be slowly coming together with the help of a neighbor and my brother. I'm praying that even with our busy medical schedule for Jordan right now that I will have the time and the means to gather what Takashi needs for this video. Pray with me please.

Thanks mom!!!!!

I've been dying for a baby carrier to use for Jordan. Her strength and stamina are not so great due to her leg issues and surgeries as well as generaly lack of use over time. Because of this she won't walk far and has become reliant on me holding her. My mom and step dad gave us annual Disneyland passes for Noah's birthday (another post soon to come) and when we were at Disneyland one day I held Jordan most of the day. I could hardly get up the next morning because my back ached. When we were at Disneyland a mom saw me carrying her and recommended this baby carrier she had. It's an Ergo Baby Carrier and can carry children up to and sometimes beyond 40 lbs. They can be carried on your back, front or hip. They are very expensive so I enlisted the help of some professional Ebay folks to find a used one. Not possible. These things are in such demand you can't find a used one around.

As a Mother's Day gift my my so generously purchased one for me!!! I am totally beside myself and cannot wait to get it. It should be here by the end of the week - just in time for another day at Disneyland. We are so blessed!!!!

I posted a picture for you to see the beauty - I got the chocolate brown one on the left. Isn't it gorgeous???!!

Thanks mom!!!

Update on Jordan's Thumb

I've been totally absent from my blog with high hopes of getting back into it on a more regular basis. I've had some major computer problems lately...computer crashing, losing thousands of pictures, losing my charger for my camera, my cd burner breaking and my computer screen dying - all while trying to gather pics and video for a chance to be a part of a great documentary project with a deadline that we are holding up. :( I'm going to continue to work diligently to get my stuff to the producer but then I promise I will be back at my blogging. I have so much to write but no time right now.

Quickly I will update however on Jordan's "new" thumb situation.

She had surgery Feb 17th to take bone from her leg to make a work-able thumb (her third surgery in the past 6 months...yet another reason I've been to busy to blog). The doctor made a thumb for her where she orginally only had a chip of bone and a little bit of skin. No pincer grasp, no palmer grasp on that hand.

We were ecstatic when we got the cast changed and saw a thumb! Yay! It looked much more proportional with her other fingers but I was concerned when she couldn't follow the doctor's directions to use it. She couldn't move it - at all. I've prayed through the past few weeks and hoped that with extensive therapy she'd be able to learn to use it. We were told by our OT that we'd have to increase therapy to three times per week (in addition to speech twice and physical therapy twice weekly) and I was discouraged but happy to do what it takes. My energy is waning and I'm desperate for a "normal" life with time to slow down and let the kids be kids. I had looked forward to that this summer but it looks like it won't happen yet. With time things will eventually slow down, Lord willing. One exciting thing is that this last visit Jordan was able to use her thumb to pinch - here's a picture:

Anyway, Jordan falls a lot and because of this her cast broke again and wasn't able to protect her thumb anymore so we had to go in again to have it changed. When they took it off there was a large sore that smelled and left green "stuff" inside the cast on her thumb. I thought at first that the cast had broken down the skin and gotten infected but then I noticed a raised ridge on her thumb that ended where the sore was. It was the pin that's in her thumb pushing its way through her skin! The doctor said the pin is pushing its way out but what it really looks like is that one of the many times she has fallen it has pushed back. The tip of her thumb isn't as stable and actually points up a bit. The doctor said that he could give her local anasthesia (a shot in the hand) then cut the hand and pull the pin out in the office (ummm NO) or we could schedule surgery. I opted for surgery to save all of us the stress.

However, after thinking about it I've left a message for the scheduler to see if the doctor can give her Valium in the office THEN do the local and pull the pin out. The thought of this turns my stomach and makes me wonder how I'll ever handle it but it would save a surgery and it would save us $250. We are scheduled now to go in Monday morning to see a resident for a pre-op for the Thursday surgery but I'm praying that we can schedule an office visit to remove it and also that Dr. Jones will be available rather than a resident. I don't AT ALL feel comfortable having a resident pull the pin out but I am certain Dr. Jones will be booked all week.

Please pray that we can schedule an appt with Dr. Jones and that he will be willing to prescribe her valium to do the "procedure" in his office. Also pray for me to able to handle it well for her (not throwing up or passing out!). I can handle a lot (stitches, scars, puss, suctioning breathing tubes, teeth knocked out...see previous post about Noah...etc.) but for whatever reason pulling pins out is beyond my threshold. :) My dad had to go with me last time to handle it. This time I am telling myself that with God all things are possible. :) :)

Pray and I'll post an update tomorrow after our appt.........

Long time no blog...

So sorry to you all. I'm sure my readership has dwindled as things slowly chug along here without anything much new to report medically and also with my abandoning you all. :)
I've been really, really busy keeping up with things but I have quite a few things to post about. Check back in a few days for a few new posts and updates on Jordan and how things are going here.
Missing my blog,
Jen :)