Monday, May 18, 2009

"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.

Thursday, May 07, 2009

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.

Wednesday, May 06, 2009

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.

Sunday, May 03, 2009

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 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.........