Sunday, December 30, 2007

Milestones...



It's funny how, as parents, we constantly talk about the milestones our children are reaching while comparing them to other children to be sure they are "okay." Jordan has been delayed in many of her milestones from the beginning which led us to consistently wonder if there would be more to her differences than just those apparent from the outside. As time has gone on and we've seen her progress we feel confident that cognitively she is up to par even though physically she is a bit behind - all due to the challenges she has had to overcome. One giant milestone for her was rolling over. She didn't roll over from back to front until she was nearly 10 months so when she finally got those legs and arms over we were overjoyed. She is finally pulling to standing and even climbing up stairs. Many of her milestones haven't been just coming naturally so this means work for us and for her.

One milestone we weren't sure she would ever achieve, as funny as it sounds, is sucking through a straw. I figured I was destined to skip the straws and sippy cups and head straight to a real cup. I assumed that her palate would never be repaired to the extent that she could actually form a suction strong enough to get juice, milk, water, whatever out of a cup or juice box. I even wondered if her lips would be able to form a tight enough seal to make it happen if the palate worked well enough (sometimes the muscles don't work after a lip repair and it effects the smile, facial expressions, lip movement, etc.). Through much effort on our part along with Jordan's speech therapist and her occupational therapist she now drinks from a straw! She drank from Noah's sippy cup with a straw last night and it was so exciting. A small percentage of those reading this post can truly relate to this. When you aren't sure your child will ever do a "typical" thing it's a pretty big deal when it happens, especially when so much time and effort has been put into helping them get there. So a pretty minor uneccessary skill has been mastered in the Gray household but it is a huge milestone for us. :)

Along the same lines as the suction is her ability to blow air out of her mouth enough to blow out her own birthday candles. I am certain Noah would be happy to blow her candles out for her for the rest of her life but I'm guessing Jordan will, one day, want to blow out her own. This is another one of those seemingly small steps that really isn't a big deal but it's huge for kids with clefts. Jordan's surgeon told me at the last visit that his hope is for her to blow out her birthday candles someday. I can't wait to tell him that she sucks through a straw already and that we are aiming for Jordan to blow her own candles out on her 2nd birthday. :)

Hope you enjoy the video!

Jen

Friday, December 14, 2007

Mile 17

Fresh and excited before the race with my training partners and friends.

Early on...still looking okay


The final mile or two where I told Shan that he had no choice but to run with me.

If you look at the time stamp on this you'll die if you know me at all...I MUST be in bed by 10:00 or I'm worth nothing the next day. I struggle though because there is never enough time between the kids' bedtimes and 10 p.m. for me to get all the things done I need to get done. I am also a night person by nature so I fight to make the good choice of early bedtimes.

I am still up because of all I had to do tonight but also because I decided to check in on my dear sister in Christ (she doesn't know me but I feel like I know her), Christina Levasheff. I asked for prayer in previous posts for her family as her two year old son was dying of Krabbe Disease. It has now been a little over one month since he left this place to wait for his family in Heaven. Devastating! I don't really know what else to say about this...to read her posts just wrecks me every time. Truly, my heart hurts when I read it. I sit and cry and cry as she shares her life on her blog. Their grief over the loss of their beautiful boy is heartbreaking. It all the more makes me long for heaven. For our final, eternal rest.

My life has been whizzing by me these past months at a tremendous pace. It reminds me of mile 17 of my marathon I ran about 3 years ago. The beginning of the race is SO exciting - words cannot describe. I was well-trained, rested, pumped up with thousands of people cheering me on and quite a few friends there for support. Mile 13 was where it kind of leveled off - I was halfway there but there were still people cheering and I was still in the pack with the friends I had trained with. Around mile 14 I got a couple blisters. Ugggg. I had to stop to get them taped and my friends went on but I was still okay. By mile 16 or so I was dying, I was discouraged and it felt like I would never make it. My body burned, my feet ached and my spirit was flagging. I came to the realization I wouldn't make it so I laid down on the grass and cried. I stayed there for about 5 minutes feeling sorry for myself and trying to talk myself into getting back up. Finally, I did. I tell you it was the strangers along the path and friends there to cheer me on (along with God of course) who really got me over that finish line (10 miles later). By this point in any marathon the crowds are much thinner than at the beginning and the end but that made it that much sweeter. Strangers would see my weary face and read my name on my shirt so they could yell, "Go Jen! You can do this! Keep it up girl - you're doing great!!!" My friends and husband were also willing to do whatever it took to get me across that line.
Long story somewhat short - I feel like I am watching Christina and Drake Levasheff run their mile 17 and I am aching for them. I'm not sure how to cheer them on but I don't know how to just sit here and watch them lay on the grass and wonder how they're going to get through this.
I too am feeling the weight of those around me suffering. I am surrounded by families who are losing their children, fighting for their children, watching them suffer and struggle through lifetimes of therapy sessions, procedures and surgeries, treatments that kill their bodies before making them better. These parents are sleeping on cots next to each other in hospitals, in their cars in hospital parking garages, they are wives and mothers whose husbands are in Iraq or they are single moms managing healthcare systems, figuring finances to pay for years of medical care and beyond.
Obvious to me is the fact that God is what gets us through. He is the ultimate cheerleader - our portion and strength forever. He is how the Levasheff's will get through this. He is what will sustain Benjamin's parents, Billy and Jacki as they've had to say goodbye to their 3 year old after a tragic accident. God kept Rocio together as her son Jared lay in a coma for weeks while doctors monitored his constant seizures. Although some parents I meet try to do it on their own it is without reservation that I can promise them that God is what gets me up in the morning as I'm having flashbacks of laying on the grass willing myself to get up and keep running all the while telling myself I just need to rest.

The struggle I find is trying to be the one cheering those flagging runners on while I'm laying on the grass telling myself I can't finish. Again, it is through God's provision alone that I indeed get up and keep going - how then, can I not cheer my fellow runners on?? I memorize scripture as it is God's promises and instructions to us, I meditate on it hourly, I post it in my house, I read it at least daily, I talk about it with my friends and family, I teach it to my children. This is the only way to run the race set before us standing firm on shaky legs until the end (Hebrews 12).

My daughter is not dying but she requires a great deal of care and I am so very thankful for every minute of it. If it were not for her differences and her challenges I would continue living my life thinking I could do it all on my own. I would have no taste of the weight that these parents are bearing. I would not have the constant reminder that these bodies are flawed, that this world is fleeting and that my hope lies in heaven alone. In one way, as my family and friends, I hope tragedy does not strike any of our lives but at the same time I'm tempted to pray that it does touch us in some way so that we can be tested to see where our hope lies.

To see Christina's blog go to http://blog.myspace.com/levasheff I urge you to yell her name and cheer her on. You can email or post responses of encouragement to her on that page.

Wednesday, December 05, 2007

We're Back!

Oh I've been so busy lately I have dropped off the face of the blogging world. I've missed everyone and actually got caught up on one or two blogs tonight as well as changing the look of my page. Cute huh? :)

Our camera died a few weeks ago but I took it apart, dug around a bit and now it works again - barely. I will post a couple Halloween pictures and then I will be back taking pictures again for posting....nevermind - there is a problem with blogger. I'll post later.

It's late and I get up early so I can't write anymore now but will later and will be checking all my friends' blogs asap.

Love, Jen

Wednesday, November 14, 2007

Gma's Visit

Here is the group!

Here's my mom and myself at Lucille's. Thanks mom for all your help and your willingness to travel to be with us!!! We missed you Pop Pop!



Here's Jordan enjoying her new mouth! She is SUCH an eater! Now that she is able, she eats anything in sight and tons of it. It's really fun to watch.
Here are a few shots from my mom's recent visit. We went to dinner at Lucille's in Lake Forest to see what she thought of Orange County's version of deep south cuisine. We LOVED it. She still insists that her family makes the food better but I'm not so sure. This place is SO good - thank you to the Gilmores for telling us about it.
Here are the Halloween shots from Jordan's therapy. They pick a theme and set up stations for the kids to go through. You can read about it on the Halloween post previously on the blog. I just wanted to post a few pictures.



Here's Jordan's Physical Therapist. She had Christina but she is now home with her new baby. This is Brian. Noah LOVES Brian and asks about him every time he knows we're going to therapy.
Here's Terry - Jordan's Occupational Therapist. She goes above and beyond the call of duty for our family. She has given us her cell phone number for questions during doctor's visits and she has even come with me on a few appts.


Jordan in Noah's giraffe costume from last year. She was a little bear on Halloween night but I don't have pictures in here yet.


Noah used Ivy Cox's kangaroo costume this year. He was so cute!


Scroll down for another post!

Jen








We're Still Here

Hi friends and family! It is so good to be posting again. We've had a very busy time lately and have not had a chance to post anything. This post will be fairly dry with a few updates and prayer request follow-ups but I'm hoping to post some more interesting ones soon.



Fingers and Toes:
I think I already told you but last week I took Jordan up to UCLA to see Dr. Jones, her hand and toe surgeon. He took the casts off and said she looked great. Yes, "great" is a relative term. They were completely black with scabs and stitches so I couldn't bring myself to really look at them much. We've been soaking them a few times a day then putting antibiotic ointment on them and rewrapping them. Finally they are healed enough that we don't need to do anything to them anymore. However I can now get a good look at them and I'm wondering why the surgeon didn't separate the index and middle fingers more. Her fingers are webbed up nearly to her middle knuckle which leaves very little movement room. He said he increased that web space between her first two fingers but it doesn't seem to really be very helpful. I am waiting for him to call back. I'm sure he has a plan for it - we have complete faith in him as our surgeon but just want to make sure we understand his plan and what is being done to her and why.
We are scheduled to meet with him in three months to plan the stabilization and lengthening of her thumb on her "good" hand.

Palate:
We met with the craniofacial surgeon who was very excited about the work in her mouth but I've since noticed a small hole in the roof of her mouth. In fact she coughed while I was looking in there and stuff came out of the hole which means it goes all the way through, which means her speech and her suction could be impacted. We'll meet with him in three weeks for another follow-up and I'll talk to him then. A hole could mean another surgery for her in six months to close it.

Orthopaedic:
We met with Jordan's new foot doctor today. His name is Dr. Brage and he is in Laguna Woods at South County Orthopaedic Specialists. He's really nice and agreed with our therapists that Jordan needs some type of brace/splint to stretch that foot beyond 90 degrees. We asked our last doctor for one and he thought it was unecessary. It is now looking like we wouldn't be so far behind if we had this brace earlier. Bummer. Anyway, because her foot was tied up to her leg for the 8 months she was inside me and then the four months leading up to her first surgery, the tendons/muscles, etc. on the front of her foot/leg/ankle are VERY short and tight while the ones on the back are VERY long and loose. Because of this we've had to work at stretching her foot to pull it down. We did six weeks of serial casting to slowly pull it down before. This doctor has a bracing system he thinks will work better than more casts on her leg. You should really check out the website - http://www.dynasplint.com/pediatric.html
We're waiting for insurance to approve it and then for her to be fitted. We're so excited that this might finally help her stretch her foot beyond 90 degrees. With her foot the way it is now she will have a very hard time walking and will walk with an OBVIOUS "difference." Please pray that insurance will pay for it and that it works out for her. She will have to wear it for many months and is MUCH preferrable to a cast to her hip for months.

Heart Stuff:
Jordan had a Patent Foramen Ovale (tiny hole in her heart) when she was born. They expected it to close by one year so we went in last week for a follow up exam/ultrasound. I love appointments like this one. Noah hasn't stopped talking about the Thomas train table in the waiting room and the nice nurses who played with him while I was in with Jordan. They took care of him while we had our appt. Shan actually went to high school with the doctor's assistant so I think we might have gotten special treatment. :) Either way, it was a blessing.
We got a letter in the mail today with the results...
"Echocardiogram - Followup echocardiogram was obtained...which demonstrated closure of the previously known septal defects and a normal heart...she is therefore discharched from cardiac followup..." Yay! I love when doctors can say, "Have a nice life!" We don't have to go back again and I'm so glad to check one thing off our list. :) Praise the Lord!

Enough of all this business now that you've been updated. I will post Halloween pictures soon and a few other thoughts.

I miss you all during our busy seasons and love checking your blogs. Know that even if I don't leave comments I am reading them.

:) Jen

Wednesday, November 07, 2007

Sweet Judson Levasheff

Sorry that I forgot to put the website about Judson. You can visit the site at www.caringbridge.org/visit/judson

You can also click on "Links" at the top to go to their My Space page and see videos of him. Amazing - what a sweet boy.

His mom posted at 12:30 today saying that Judson went to be with Jesus at 11:30 this morning. Please read their site, consider their suffering and examine yourselves as we all should. Would we respond in the same way?

Jen

Tuesday, November 06, 2007

Please Pray

Some of you have heard about, read about or are somehow connected to a member of the Levasheff family. Drake and Christina have two children - one of which has a terminal illness called Krabbe Disease. He seems to be in the final stages at this point and I ask you to read through their Caring Bridge site and their My Space page to find out how you can pray for them and also to learn from them and their response to such tremendous grief. I plan to write more on this but not tonight - it's too late and we have an early day tomorrow - but please read their postings and take a second to evaluate your own life and your guess at how you would face something so devastating.
Jen

Wednesday, October 31, 2007

What is normal anyway???


Okay this blogging daily will stop soon I promise but I figure since I still have some of you as a captive audience I might as well take advantage of it. In fact, when I was a kid I wanted to be, at one point, a tour guide operator. That way I could use that authoritative voice and talk all day long to an audience who had nowhere else to go. They would be trapped on my bus or tram and I could just talk at them all day long. Funny huh? :) The blog is like that for me...I can write these long posts and think to myself that hundreds of people are checking it all day long to find out what I have to say next. I guess the whole blogging phenomenon is kind of like that but I don't mind. I love reading other blogs and I hope you enjoy reading mine.

So today was a kind of up, kind of down day. It was a great morning. We (myself and the kids) finally got out of the house just the three of us to do something normal and routine like go to get a couple little things at the grocery store and finally get a pumpkin for carving (or "cutting" as Noah says). Noah was talking all morning about this pumpkin we were finally going to "cut." Being gone at the hospital all last week then trying to take care of Jordan and get my mom on her plane then all of our appointments Monday and Tuesday there really was no other day to do it. We get to Albertson's and nothing (we did buy a few $1 costumes for the kids...yes, ONE dollar). We walked over to Wal-Mart, nothing. When the lady at Wal-Mart told me that they sold out of their last pumpkin at the end of last week I nearly started crying. I didn't say anything, I just turned the stroller around and headed for the car while Noah is asking over and over when we're going to cut our pumpkin. I'm totally trying to control myself and keep from losing it. At the same time I'm telling myself that it's just a stupid pumpkin and that I REALLY shouldn't be crying over not being able to cut a pumpkin! On the way home from the store Noah wanted to hear our "God Music" so I turned it on and How Great is Our God came on. Hearing Noah sing it and listening to the words I really, again, felt so thankful for so much. I was overcome with thanksgiving that we have Noah who is healthy and wonderful and that we have Jordan with us still, despite my thoughts after her surgery that something was terribly wrong. To have a God that I KNOW for absolute certain is perfect, loving, just and unchanging through time and trials is such a comfort even when things aren't perfect. He doesn't change when things in this world do.

In talking to Shan's mom later she helped me to realize that it wasn't just the pumpkin that was the end of me, it was that I wanted something "normal" for our family for once. I wanted to be like everyone else, cutting pumpkins, sharing "The Pumpkin Gospel" with my kids (Google it and you'll see what I'm talking about). This whole pumpkin thing threw my entire day! I dressed the kids up late morning to take them to Jordan's school for therapy. They had a Halloween day for the kids that was so fun. It was nice being there in a place where I could relate to the parents and the therapists, where they also want "normal" in their lives but have had to adjust to a new "normal." My favorite thing of the morning there was the fact that Noah didn't stare, didn't flinch, didn't notice any of the kids who were in wheelchairs, using walkers and who were severely affected by their differences. I LOVE that that is "normal" to him now, that (Lord willing) he will probably not stare when he sees a person with a physical difference and he will not gawk, he will not whisper and he will not make them uncomfortable or ashamed.

On our way home from therapy Noah is still talking about our pumpkin cutting so I decide to veer over three lanes to check out the Dana Point Harbor Pumpkin Patch before driving to our surrounding cities to find a pumpkin while the kids napped. As I am pulling in to this desolate, deserted parking lot covered with straw I see ONE pumpkin sitting by itself in the middle of the lot and a lonely man hanging around. He said that it is, indeed, his last pumpkin and that he had already checked every single grocery chain in our entire area and that there were no more pumpkins. I nearly fell over. This pumpkin was the last in our tri-city area! (San Clemente, Dana Point, San Juan) It was ours - warts, bumps, lumps, broken stem and all it's glory - it was ours! The guy wanted $5 but I only had four...this was the first time I used Jordan for sympathy...I took her out of the car with me when I went over to ask him if he would accept $4 since that's all the cash I had with me. He agreed and we left with our prized pumpkin - elated!

Although we didn't have time to carve it later we did have a nice night at home with the kids and walking around the block with our friends and neighbors. We'll carve the pumpkin tomorrow hopefully but it doesn't really seem all that urgent anymore. :)

Thanks for reading my long post. As for Jordan she is still doing well and we are planning on being back at church tomorrow night for our young marrieds' bible study. Yay! We miss you all so much at Compass Bible Church!!!!

Jen

Tuesday, October 30, 2007

Follow Up Appt #1

The kids and I drove up to Santa Monica today to see her plastic surgeon. He was SO happy with the results he was clapping and just chuckling and staring at her. He kept showing me her picture from before and saying that he has only one more little fine tuning to do to her nose at the next surgery and it'll be "perfect." I don't see such a huge difference but I can tell it's better. I think the eye still throws me a bit since it's off balance. He said that in two years (when she's three) he'll make her left eye level with her right, create an artificial tear duct for her eye and also do that last touch on her nose.I would like to see him take some of the extra fat that she has on her foot and leg during that surgery too but we'll see.

Dr. Jones "cast guy" was able to get us in to redo her casts in L.A. while we were up there. He did a great job with two soft casts that really seem like they'll stay on. She didn't crawl on them tonight but we'll see how tomorrow goes. I can't see her sitting still for long.

Funny story...on the way there Noah started screaming, "Sissy hand black! Sissy hand black! Noooooo Sissy! Don't touch!" He was making his funny gagging sound he makes when something is really gross (like fruits and veggies, haha). I turned around and saw her stitched bloody hand reaching for Noah from her car seat. It was like seeing this Frankenstein hand reaching up for him. She managed to get the bandage we used off. I pulled off in Carson City somewhere to rewrap it only to find that I couldn't get back on the fwy from that exit. I sat in tons of 18 wheeler traffic to get back on going south just to exit and go back north. After that we sat in SO much traffic on the way there due to an oil spill, truck fire on the 405. We were 45 minutes late with no time for lunch. We were sitting for so long on the fwy that I finally got out of my seat to try to feed Jordan. We rushed to Westwood for the casting and thankfully made it only to spend more than 3 hours trying to get home. We got home around 7:00 tonight and Shan had a giant spread of food here from more of our loving church family. WHAT a blessing!

I am off to bed and will hopefully see many of you tomorrow at our church's Fall Fest. Go to CompassChurch.Org to get details or go to Aliso Viejo Town Center to have a free night of food, fun, and tons of activities for the little ones. What a great option for your families instead of the usual Halloween stuff. We'll be there with our little giraffe and kangaroo. So excited!

Jen

Monday, October 29, 2007

We're Still Here

Obviously from these shots you can tell that Jordan is thrilled to be home. We're so glad she's home with us!

Noah surrounded by the girls...his Aunt Vel in the middle with cousins Brianna, Josslyn and Jayde and Jordan. Poor Noah. :)


Thank you SO much Gma for helping us this week. We already miss you terribly but are SO enjoying our clean house and stocked fridge. Noah cried last night when Gma left us at the airport. He was really sad but thankfully Gma will be back next week.


Jordan and Noah out for their first walk. She is obviously enjoying herself! Funny.

Sorry we haven't posted anything recently but it's been a little bit of an adjustment. My mom left last night and Shan's family and my dad came over yesterday to see us. It was great for the kids to see everyone and for the cousins to see that Jordan is doing so much better. She woke up about four times last night but we let her cry for a bit and she eventually went back to sleep. We woke up this morning at 9 a.m. even after apparently turning off the 6 a.m. alarm to get up and do my bible study. The whole house was sound asleep until then. We woke up Jordan and Noah at about 9:15. I think everyone is recuperating, not just Jordan.



Noah and I took Jordan to her pediatrician today for a blood test which came back great. Her body is making new blood to replace the lost blood so quickly. It looks like we won't need any medication for it. He also re-wrapped her foot since the first larger wrap was coming off. Tonight though, her giant arm cast came off. Yep, her little arm just slid right out and her stitched up fingers were out in the open - I thought I was going to faint. Thankfully Shan was there to help because I had a hard time looking at them much less touching them. We couldn't get the cast back on so we just re-wrapped it ourselves. It's much smaller but now doesn't have the protection when she cralwls so I'm not sure how we'll keep her from hurting it.



Tomorrow Noah and Jordan and I will head to Santa Monica to see Dr. Kawamoto, her plastic surgeon so he can check out her palate and her eye. I'm going to ask him details of what he did to her face because we keep looking at her nose trying to figure out what he did. We think he built it up, making it not as flat and he obviously pulled that left nostril down a bit too. My mom said that every night last week when Noah prayed he prayed for Dr. Kawamoto. So cute.


We really are so thankful that our worst fears that night after her surgery weren't true. Just having a few minutes where I thought we were losing her makes her (and Noah) that much more precious to us. As she was cracking me up today it just kept hitting me how much she adds to our family and what a blessing she is to all of us. We are so thankful to the Lord that she made it through and that the doctors took precautions when they saw things weren't going well with her. It's been bittersweet coming home because I am really missing the nursing staff and doctors in the PICU. I also miss the families that were there that I bonded with and I'm wondering how they are making it and how their kids are. I think of them all day long and wish I could see them. I would love to share with you all someday the things I/we saw there so that you can also gain the perspective we gained in regard to struggles and hardships.

Thanks again to everyone for your help and prayer.

jen

Saturday, October 27, 2007

Home Sweet Home...or is it?

Just a quick update on Jordan for you faithful bloggers.

We were so excited to get home and get some rest, get clean clothes, see Noah, etc. however Jordan seemed to do better in the PICU than at home. She is totally a stomach sleeper but has had to sleep on her back propped up, with her arms restrained so she can't take the tape off her nose. That paired with a little discomfort (I don't think her pain is terrible) she hasn't slept more than one hour straight. All night she would finally fall asleep only to wake up again crying. We tried rocking her, rubbing her chest, singing, playing music, putting her in our bed, feeding her, giving her Tylenol - everything. Today she didn't nap but 30 minutes or so and cried a considerable amount of time. Finally tonight we gave in and gave her Tylenol with Codeine which didn't even work. The girl is on narcotics and still won't sleep. We decided to try putting her on her stomach and just not worrying about the tape. If it comes off it comes off. She immediately fell right to sleep and hasn't woken up yet. I am hoping to have a solid night's sleep even though we have now stayed up late talking with my mom.

As for her health and recovery...she seems to be doing really well. Her pain seems more like discomfort and is managed with Tylenol and Motrin although I do wonder if it hurts because she doesn't really want her bottle. She is VERY lethargic and very pale which I think is due to the blood loss. Her levels were still low when we left so they told us to see our doctor on Monday for a test to see if we need medication or can make it slowly back to where she was before the surgery. She doesn't seem all that sleepy, per se, but she really just lays back and stares off. Kind of sad but still an improvement from a few days ago when she stayed asleep constantly and had a machine breathing for her. Yikes - what a week.

Next week we go for a few appointments so I'll update on prayer requests soon. I'm also going to post a video clip of her crawling with her big casts on her arm and leg. It's really funny. She's surprisingly good except on the wood floors where it's slippery.

Take care all of you!

Also, for those of you who know Carrie Steele it's her birthday tomorrow! (correct me if I'm wrong Carrie) We are so blessed to know you and are so thankful for you (the Baja Fresh was great tonight, we devoured it). :) :)

Friday, October 26, 2007

WE'RE HOME!!!!!!!

WE ARE HOME AT LAST! Oh man we waited so painfully long today for the doctors to release us and finally they did around 6:30. We are home, Jordan is sound asleep in her bed, in her room, we've eaten a fantastic home cooked dinner of pulled pork, cole slaw and potatoes compliments of my southern mama (eat your heart out Gilmore Family!) and we've put all our dirty clothes in the wash. We also got to see Noah for a minute even though he was in bed. The only thing he said to me was, "Lay down Mama" so of course I couldn't resist. It was so great to see him and even to smell him - sounds weird I know.

My mom did SUCH a great job holding down the fort here at home. She was constantly cleaning up dust from the fires that has settled in our house, she was playing with Noah giving him much needed attention, she stocked our fridge, our pantry, she cleaned up the house and even completed our job of potty training little Noah. She even bought a new rug, some new candle centerpieces and a new table runner for the house. How fun! What a trooper. We're sad that she can't stay another week so we can have the time to visit with her that we planned for originally but we will see her in two weeks when she comes back for the weekend.

We are hoping to sleep in a little, lay around, spend time with both kids and my mom tomorrow. Jordan is still really weak and lethargic (they think it may be due partially to the blood loss - her blood level is still low and we'll get it checked Monday) so we won't be going anywhere. Sunday our family is coming over. Shan's mom was at the hospital with us most days and I'm sure is looking forward to seeing Jordan doing better and I think Shan's nieces would like to see a healed Jordan looking more like herself after seeing her pictures from this past week. I'm dying to get to church with the family but next week may be our soonest to get everyone there together. We miss you Compass!

Thank you SOOOOO much everyone for all you did for us. You may think you made minor sacrifices but they were HUGE for us. As I said before, people were continually blown away by all of you and your support for us. I can't even think about it or I cry. This week has been terribly long and has had some very trying moments. We're so happy to have it behind us and to be able to look back and see so clearly the ways God sustained us through it...amazing! I could tell you story after story all night but I should get to bed.

We will see you all soon, hopefully - Thrivers: We will see you Thursday night, Lord willing!

Pastor Dale: I called you on our way home tonight but your voicemail didn't come on.

With love and gratitude,
Jen

Closer to getting home...




Hi everyone.

We came in this morning after sleeping at the Holiday Inn (thanks to the Seagers!!!) and the nurse had Jordan out of bed and was holding her. She was basically sitting up and he said that he had walked her around the floor because he thought she was bored. So cute. She doesn't seem to fall asleep unless we're holding her but she did sleep the whole night last night until 7:30 this morning thankfully. She also took another full bottle today already.


We're waiting for the docs to make rounds and let us know if we can go home. Our nurse said not to get our hopes up because they don't usually discharge from ICU. They usually have to send the patient out to the regular floor for a night. :( I want to go home so badly, especially considering the fact that she is doing so well. She's not smiling or playful but she is definately doing much better.


Last night the Fieldhouses came to visit so Jordan could see her little girlfriend, Tessa. Tessa has recovered from her surgery two weeks ago and even thought to bring Jordan a turtle balloon with bandaids on its face, leg and arm. So cute! The girls were just staring at each other and Tessa just kept smiling. She was trying really hard to cheer Jordan up. Oh it was adorable!


Okay we'll let you all know as soon as we do when we'll be home.


Jen

Thursday, October 25, 2007

Hooray!!!!

She is doing fantastic and we feel certain she will be coming home with us tomorrow! We were really anxious to try to feed her. We thought it would hurt and she'd have a hard time...she literally downed 6 oz of milk like it was nothing! The best part of it all is that she "sucked" it down. Until now she has been missing the roof to her mouth and has been unable to suck or form a seal in her mouth. I could feel the bottle being sucked into her mouth as I was trying to pull it out because it was empty. She sucked for the first time at 1 year old. Weird. :) :)

As I was walking back into the unit so elated that our girl is back I ran into another mom I met while sleeping (if you call it sleeping) in the family room. She was crying and said she couldn't talk but that she'd talk to me tonight when we go to bed. Thanks to Megan and her sister Laurel, we are staying at a hotel and I feel terrible for this mom. It is so hard being here knowing that Jordan will be going home and will get better when I know that is not the case with some of these kids. I feel guilty that we are staying in a hotel, I feel guilty that she is doing well and also that we are leaving tomorrow. It's really a tough situation. Please pray for these families. They have SUCH sad situations and many of them only have hope in these bodies in this lifetime. My hope comes from a God who loves me, who created me in His image and who has called me according to His purposes. Such comfort! Pray for their children's lives and also that they would all, sooner rather than later, learn to trust in Christ as their salvation and sustenance.

So very thankfully,
Jen

She's extubated!!!!!!!!!!!


Such great news! They took the tube out and she is breathing on her own just fine. It was totally freaky when they were taking it out and her crying sounds SOOO strange - that's a little unnerving too but at least that tube is out. We are ecstatic! Yay! Yay! Yay! You can tell that her little face and neck are puffy from the steroids she's been on but thankfully she's off the tube. We'll post more later.

Possible Extubation Today

Yay! The docs were just here and are ready to take the tube out this morning. There is a buzz of activity and we are so excited for her. The doctor said that even if they take it out and all goes perfectly they will continue to watch her here overnight to be sure that all goes well. We are hoping that she's off the ventilator soon so we're able to hold her. If so then Shan will go home for the night, I'll stay here and he'll come back tomorrow with my mom and Noah to pick us up. That way Noah can see the hospital (I wonder if kids' imaginations are worse than reality sometimes) and see the fun play room for the kids. I absolutely cannot wait to see him and it will be great to finally see my mom considering she's been here almost a week and I haven't seen her.

Okay so we will keep you posted. As soon as the tube is out we'll post an update and hopefully a little video. :) :)

Pray that the extubation goes well and that her throat has gone down enough to leave it out.
Pray that she is able to eat soon and that Shan gets home and back safely.


They're here!

Wednesday, October 24, 2007

Last Update for the night 9:45 p.m. Wednesday

No picture for this post - nothing too new. I just wanted you to be updated for those of you praying for her comfort tonight.

She is doing great! She is totally relaxed, and not at all in need of any medication except Tylenol (no codeine, just straight Tylenol). Even when we turn her, suction her, and pound on her chest to loosen the fluid up she is so mellow. Tonight the nurse was hitting her chest to loosen stuff and while she was doing it Jordan fell asleep! I have to wonder if it is simply an answer to prayer that she would be comfortable and relaxed. She didn't even gag or cough from the tube tonight.

The respiratory therapist was here a few minutes ago and said he still doesn't hear an air leak (meaning he would guess it's still swollen) but that they will decide whether or not to try to remove the tube tomorrow. If they remove it tomorrow morning we will still not be home until Friday evening. If it's removed later than that obviously we'll be home later.

Okay, we're going to watch a movie on the laptop and then get to "bed." I'm on the reclining chair tonight and Shan is in the car. Ha. I keep waiting for a security guard to knock on the window and tell him he can't sleep in his car. So funny. I just found out tonight from another mom that there is a shower on the floor for us to use! SO excited!
:)

Okay- will post more tomorrow morning when the doctor's decide about the tube.

Jen

She's awake!


Yay! Jordan is awake and alert. This is the longest she's been awake, calm and alert since before surgery. She is looking around checking things out. She periodically starts crying (no sound comes out though because of the tube) and get agitated but is mostly okay.


Tube Update:

The staff has decided to wait another day to see if her throat swelling goes down before taking the tube out so for now we are status quo. Please pray that she will be calm over the next 24 hours while we wait to take the tube out. I think it will be hard on her because she is off the anti-anxiety medicine and we don't want her back on it. She will be awake and alert but annoyed with the tube down her throat and all the restraints. Pray too that she will sleep most of the night so we don't feel guilty leaving to sleep.


Will post more later.

Update 10:45 a.m. Wedensday





We had a GREAT night of sleeping last night - yes 8 hours! We both got showers this morning and are feeling MUCH better. We got here in time for the doctors' rounds so we were glad. The night nurse was really sweet and so good. While we were gone she gave Jordan a sponge bath and cleaned her hair and face a bit. I'm so thankful and appreciative that she took the intiative with that.


- She is still on the ventilator: It's breathing completely for her right now and they don't hear an "air leak" which would tell them that the swelling is going down in her throat (her throat is still swollen tight around the tube). They are hoping to remove the tube today or at least do an exchange tube which is smaller so she can start breathing more on her own. They are starting to use this rubber thing to hit her chest and back to make sure fluid doesn't sit in her lungs which could cause pneumonia. She hates the pounding an moving but did calm down once they laid her back down. They're also changing her position every so often to help with the fluid and the circulation. She likes being more on her side I think.


- Pain: She is now completely off the Fentanyl (spelling?) for pain and I guess they're only giving her the Atavan (spelling? it's an anti-anxiety med to keep her calm) as needed. They want to take the chance of the pain being there because it's more important that she is awake and stimulated to start breathing on her own - even if it comes at the cost of her being a little uncomfortable. I don't love the idea but it seems necessary.


- Nutrition: The plan for now is to start nutrition through the IV (TPN) but the nurse just said it's not good to do that for long. We're hoping that she can be on a bottle soon though. She is, of course, contipated and gassy (that's typical for her) which makes her a little uncomfortable but hopefully that'll get better since she hasn't eaten food since Sunday night.


It's still sad to see her like this and we're ready to get that darn tube out even if we can't get home right away.


Other fun news - our buy is growing up at home without us! He "earned" his giant helicopter today...if you remember, we couldn't get him to go #2 on the big potty so we offered this fantastic giant helicopter (our neighbor, Noreen, gave it to him) if he did it. This morning while we were talking to my mom and to Noah he ran over and did his "business." So funny!!!


The respiratory therapist is here so we gotta run..

Tuesday, October 23, 2007

Such Gifts!



We want to post a HUGE thank you to all of our friends and family. We are speechless (yes, even I am without words for once, ha ha). Truly - you are all amazing and we can't believe you are our friends...and family.


Today Sarah came down to spend the afternoon and relieve us for a little while. Gabe and Staci came down from Bakersfield to go out to dinner with us and to see Jordan. Sarah came with a

free nights stay at a hotel that she earned with her credit card points (she says it's not a sacrifice but she gave away a date night so we could get some sleep). Gabe and Staci came with a big bag of new clothes for me from Target, two pairs of shoes, one of my favorite magazines, candy and gum. They also came with a little gift bag...I can hardly type it without getting teary eyed - Megan from our small group bible study organized people from our group to get money for restaurant gift cards while we are here. Gabe and Staci did the shopping. They intentionally went to local restaurants here in Westwood that we love and got gift cards with menus so that while we are here we can get out of this place to get fresh air and good food (greasy chicken noodle soup from the cafeteria is only good the first 5 times). :) Everyone has blessed us tremendously with offers of help and of service as well as notes and calls of encouragement and reminders to lean on God's provision when we are tired and stressed. My mom has been home taking care of Noah and plans to this entire week until we get home. Granted, Noah will need some re-training afterward (yes he is surely enjoying his freedoms with G-ma) but we are so thankful he can be in his bed and at our house with her while we're here. Shan's parents were also here the entire day with us yesterday and Shan's mom and sister came today to spend some time here even though his sister has major back pain. All of you are so sacrificial in your service to others it is humbling to have it directed our way and really tough to accept at times.

I can't tell you all enough, from the bottom of my heart, how much I appreciate you and how much the love of Christ shows through you and is an example to me. We are constantly telling the hospital staff about you all and they marvel at the support.

THANK YOU! THANK YOU! THANK YOU!

We love and miss all of you and can't wait to see you again and for you to see and hold Jordan.

Also, the care plan for now is to assess tomorrow morning and see if she is able to breathe on her own and if so then begin to wean her from the ventilator. Since the tube is stitched to her lips and there is a string holding her tongue to the side they may need to take her to the operating room to do it but we would love prayer that she doesn't have to go down there again. Once they take the tube out and she is on her own they may keep her in ICU for a night or they'll send her to the regular room down the hall.

We'll let you know tomorrow morning what they decide.

The Gray Family

Update

We talked to the doctors this morning and their best "guess" is that we will be able to bring her home Saturday afternoon. No promises but they are thinking she can be off the ventilator by Thursday (Lord willing if the swelling goes down by then - she is on a steroid right now to help the swelling) which means she needs two days to get the medication out of her system and start eating. Thank you SO much to everyone who has posted comments and left messages. Our phone batteries have been dying and we are very limited to when and where we can use our phones so please don't feel bad if we aren't calling you back. We have wireless internet by her bedside so this is the best way to reach us. You can look forward to MANY blog updates.

Monday, October 22, 2007

Update...Whoa what a ride this is!



I know that so many of you are praying for us right now - I've read your comments on here and have heard from Sarah Cox that you are faithful. I cry thinking of all of you praying for Jordan and for us.

Shan is really tired so I need to go relieve him in 15 minutes...I'm wordy so it kills me to keep it short.

I will write about the full experience tomorrow (Tuesday) morning and would do it tonight but the battery is dead so I can't use it by her bed.


Basically we got the run around for a couple of hours about where Jordan was and what was going on. I insisted someone call and finally (after MUCH avoiding me) that she was still in the operating room and that they were "working on her" thus were not able to talk to me and would be up as soon as they could to update me. I was certain she was dying - that they were working to save her and not telling us. They had our baby and wouldn't tell us anything and wouldn't let us near her. It was the worst feeling I've had ever in my life. Ever. I was hysterical and paged the doctor on call because no one else was around except this poor admissions clerk who was trying to help me find Jordan and get information.
Finally the doctor on call called me to tell me that her throat swelled and was cutting off her airway. They had to put a breathing tube in to prevent it from being able to swell any more and to ensure an airway. They didn't want to wait fearing that she would continue to swell overnight then needing a tracheostomy (spelling?). Anyway, long story short, she is all hooked up and is feeling comfortable. We've heard one day up to four days of keeping the breathing tube in and ventilator breathing for her. They will just keep her "asleep" until they take the tube out. I don't think we are going home until she can drink milk from her bottle.
Here are a couple pictures. The leopard print one is so cute. :) They were taking x-rays and actually had a child's leopard print x-ray shield. I had to take a picture. That kind of thing doesn't come around very often in ones life. I'm able to chuckle a little at this now but to be honestly it has been a very difficult night - as an understatement. God is SOOOO stretching and growing us and we're feeling the growing pains but able to trust that He will provide everything we need and still give us perspective as we are next to young children with a much worse situation.
I know these pictures are hard to look at - I agree. I just know that as I am praying for others in need I love to "be there" even if it is just through the computer .
God is so great in his provision that there was one cot left in the family room so Shan's shift starts in 2 minutes while I stay with Jordan. Usually all the cots are taken but He knew that we had nowhere else to go so he in his infinite wisdom provided us a bed - granted it's about as wide as me with no arms on the sides so pray that whoever is sleeping on it doesn't roll over even an inch. :)
Forgive the typos and spelling errors. I'm not up to par here but I promise to be faithful in updating - it's a sort of therapy for me anyway. :)
We love all of you and will write more later.
We can't use the cell phones in the PICU but can check messages in the hall. You can text or call or post comments on the blog or email. We'll check periodically.
Jen

Surgery Update #2

Okay so she made it through surgery...yes I was having a few minutes where I was having to prepare my heart for whatever may happen. Shan put it great that he was thinking about the words to the hymn It Is Well With My Soul...regardless of God's plan for her. She is still in recovery and it's taking a lot longer than they said it would so I am fighting the anxiety again. Phillipians 4:6 and 7 says, "Do not be anxious in any but in EVERYTHING, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding will guard your hearts and minds in Christ Jesus." So with that we are still waiting here in the waiting room after eveyr family that was here this morning has come and gone. Strange.

Quick update before they call us in...I'll post pictures tonight once we get settled so you can see them. Please look at them before you show your children, they may be graphic.

Palate: Repair went well. He found a "very strange thing" that is a tooth but looks nothing like he's ever seen. It was apparently hidden in there. I'm wondering if it was her adult tooth that was deformed up there and now will have to be replaced...hmmm we'll see. Her tongue is stitched to her cheek until at least tomorrow I think so that if she chokes they can get it. Weird thought huh?

Nose: He ended up "starting" on the nose revision. He started the "lengthening" process, bringing down her left nostril which was higher than the right due to the first repair. He'll do more work on the nose over time.

Bump on eye: He cut that little bump on her eye off and found that it was attached to a thick, tough line of scar tissue (pretty much confirms the fact that the cleft was caused by the amniotic band - he's said that in the past but I still wondered and therefore worried that we could or Jordan could have a child with a cleft...this rules that out). He said the scar tissue under there was causing the pull down of the eye. He'll work more on the eye later when he goes in to work on the tear duct.

Tear Duct: Okay this part is confusing because I don't understand how the eye works and the ducts but I'll try to explain it. He probed the blocked tear duct and found that there is a hole for drainage, there is a top part to the duct but the sac in the middle is missing and I think he said that there is a bottom part to the duct that drains the fluid down into the nose. He will have to create an artificial duct/sac but can't do that until she is like three or so. At that time he will reconstruct her left eye that is pulled down. If he tries to do the eye now it will just have to be redone later anyway when he does the tear duct construction.

So she came out of surgery at 6:00 and they said it would be 15 minutes until she was in recovery and now it's been an hour and a half. We're very frustrated and a bit concerned.

We'll post more later.

Jen

Okay so scroll down to see the first pictures I posted then scroll back up to these.

We got up at 3:45 to get ready and get out of the house by a little after 5. Poor Jordan didn't nap all the way here and hadn't eaten since 10:45 last night. We were thinking they'd take her in by 9:15 or so...not the case. The surgery before us went really long so they didn't take her in until noon. Basically they are working on all the things we posted before (see below or the archives) but surprisingly the plastic surgeon said that he is going to "try" to work on her eye and nose if he can. I assume that means he needs to see how well the palate goes and the tear duct - like how involved it is and how long it takes. Right now their best guess is 2-2 1/2 hours for each surgeon. That puts her out of surgery at 5:00 tonight. I would guess she'd be in PACU (Pediatric Recovery Care Unit) for at least an hour and hopefully into her room after 6:00 sometime. This morning was difficult for me to send her off to yet another surgery knowing what she was facing but by the time they finally took her it was a relief that we were getting started. She was, of course, smiling and happily going to the anesthesiologist so that made it easier.

I think I accidentally erased the photo but I took such a great one...Jordan in her hospital gown sitting in the baby hospital bed wearing her sunglasses. As I put them on she started smiling and waving behind me. I was laughing and finally turned around to see part of the team of doctors standing there cracking up at her in her shades. :) Funny! She is so hilarious and was making us laugh all morning. Such a good girl too not even crying or fussing without food or sleep.

Okay so we will update you all through the blog as we find out how things are going. We have wireless internet access in the lobby and also can use our cell phones. You can post comments or email too.

Thank you all for praying faithfully. We are SO appreciative.

Jen





Friday, October 19, 2007

Isolation Week or Fun Family Time???


Okay so I started out this week not looking forward to our isolation. I love getting out of the house even if it's just to run errands and the thought of not leaving the house for seven days as we simply sit and wait for Jordan's surgery...not exactly a fun way to wrap up a dull week in my opinion. However, God has been so good to change my perspective completely and also to bless me with a few little outings (even if it was just the grocery store at 9 pm after the kids were in bed). As the potty training forced me to simply be near Noah I found myself enjoying spending time with him doing things he likes to do...read books together, play cars, build towers with his Wedgits and Legos, dance and sing to our favorite cds. Thursday morning Jordan, Noah and I were having such a great time dancing and singing that it really hit me how blessed I am to have this time with them. Today I used a gift card we got for Jordan's birthday (thanks Tobi and Brett!) to get a few fun things from Target's $1 section. I got a bunch of masks and dress up type things. It was so fun. The pictures above were taken after bath tonight. We were laughing so hard.

Barbara from our church's Prayer and Care Team called to get the specifics for the faithful prayer warriors at church and it hit me that her surgery is only a couple of days away. It made me that much more thankful for God's perspective of cherishing every moment with our children and realizing that they are truly GIFTS from the Lord. Jordan has added so much to our family and is such a joy to have. She is hilarious and such a reminder for us to encourage others to trust in God when circumstances make us doubt. Since her first birthday I've thought so often about the days when the doctors continually offered "termination of the pregnancy" as an option. If only they could see her now huh?

Wednesday, October 17, 2007

Potty Training Part Two...he's getting it!

So we are only on day three of this and he's got it! The first half of the first day was truly the worst but it has only gotten better. Basically he peed all over the place the first morning, only had a few accidents that afternoon then only a few yesterday all day and now today he went the entire day and night without one peeing accident. Amazing! He told us all day long that he needed to pee (but many times I had to remind him throughout the day).

The struggle at this point is going #2. He is having a real struggle with this. Yes, you will all want to wear shoes the next time you come to our house. :)

We will update the blog one more time before we go to surgery on Monday morning - thanks for checking in.

Monday, October 15, 2007

Potty Training...yikes





So today was the day...our first day of potty training. Some girlfriends told me about a book called Toilet Training in Less Than a Day. Yes, LESS than a day. I guess the idea is that they get the idea of going when they feel the need. We were all set up and excited this morning. I took Noah to Wal-Mart last week to pick out his big boy underwear, his favorite drinks, salty chips (to make him thirsty so he'd drink more thus have more opportunities to go on the potty), and favorite candy as reward for staying dry and going in the potty.
All the supplies were set out and my heart was prepared for this to be a fun day of laughing and learning to pee on the potty. Wow, was I off. By 10 a.m. I was NOT laughing. Noah was so excited about all the Sprite and Rootbeer that he drank and drank so much so fast I couldn't even clean up one mess before he'd go again all over the floor. By now he was SO hyper and all over the place I couldn't even get him to focus on what I was saying. He couldn't even stand still - honestly he was slipping and falling in his own pee and cracking up the whole time. His usual mellow self was screaching through the house yelling "I go on the potty!!!!!" (Check out the picture of him above holding the soda can - he looks like the Incredible Hulk about to burst out of his skin with soda running down his chest) The fun peaked when he had a "full" pair of underwear (yes, number 2) and I didn't know it so when I helped him pull his big boys down it plopped onto the floor and all over the potty and Noah. :)
Seriously, it was tough but by naptime he got it. He woke up in a Pull Up diaper asking if he was dry. He told me he wanted to go potty so he went...in the potty. Five more times in a row he went in the potty after telling us he needed to go and basically doing it all by himself. We hit a bump in the road when Grandma (Shan's mom) came over, Jordan was restless, the dogs were going crazy, we were trying to clean up after dinner and he had a few accidents.
Overall we are totally hopeful about this potty training business at the end of our first day. We need to just consistently pay close attention to him and help him remember to go (ask him if he needs to go). The worst is over even though it'll be a lot of work still as he gets into the habit.
SO sad that our baby is growing up so quickly.
We'll keep you posted and, of course send updates on Jordan's surgery as things happen. Right now we're just praying that she stays healthy and all goes as planned.
Jen

Friday, October 12, 2007

Jordan's Pre-Ops are done...

Tessa's Update:
Thank you for praying for the Fieldhouses if you did today. I saw them this afternoon and got to see little Tessa. It brought back so many memories from Jordan's first surgery and made me so thankful to be able to visit them and do what little I could to support them. Their surgeon removed some bone and moved the front of her mouth back. He also connected her nose to her lips but is going to wait to finish the lips for a few months. Keep praying and check out their blog for updates.

Jordan's Update:
I took Jordan to UCLA this morning for her pre-op with her hand surgeon. He is hands down (ha! No pun intended), the nicest, most down to earth doc we've got (although we love all of our doctors and specialists).

Here's the procedure plan...
Henry Kawamoto - Plastic Surgeon
- Closing the palate
- Removing the small bump by her affected eye
- Clearing her blocked tear duct in the affected eye (it may end up being more than a simple clearing of the duct, depending on what he finds in there)

Neil Jones - Hand Surgeon
- Seperating her index and middle fingers on her "bad" hand and widening the web spacing between her pinky and ring finger on that same hand. She'll have a cast up past her elbow for two weeks.
- Her toes will be seperated and "cleaned up" on her bad foot too but no cast will be put on. He'll just wrap it well. I'm concerned about her foot not being protected while she tries to crawl around (I wonder how she'll crawl w/ a cast on her arm. I guess I'll have to post some videos on the blog. :)

It sounds like the surgery may be around four hours and will start first thing in the morning Monday, the 22nd. We aren't shutting ourselves up in the house but we're avoiding the nursery and hoping both kids stay healthy.

Also - we're embarking on a new chapter in our lives...we're starting potty training on Monday with Noah. Yikes. I'm SO sad that my baby is going to be wearing underwear! No more rustling diaper sound when he runs around the house! I'm really dying over this. I know that they can't stay little forever but this has just flown by. We shall see how it goes. I have a feeling it's going to be full of some funny stories so check back often for updates. :)

I hope this finds you all well!
Jen

Thursday, October 11, 2007

Please Pray for Little Tessa Joy


Today I have a prayer request for all of you faithful warriors. I know that only a few of you are blog addicts, checking people's blogs daily, and therefore many of you may read this and feel it's too late to pray. If you get this tonight or tomorrow please pray for little Tessa's surgery and if you get it later please pray for her recovery and for her parents as they work to feed her and tend to her needs.


Many of you met Tessa Joy Fieldhouse at Jordan's party. Please be praying faithfully for her and for them through this.


Their blog is www.thefieldhouses.blogspot.com and the link is on the side bar of this page.


Here's an excerpt from their recent blog posting...



Mark, Tessa and I met with Dr. Wells on Thursday afternoon and got a little bit more information about Tessa's surgery.
Here are the FACTS: - The surgery will take place this upcoming Friday (October 12) at 7:30 in the morning.- It will take from 1-3 hours depending on how well it's going.- Procedure: right now Dr. Wells plans on taking a piece of bone out from the roof of Tessa's mouth so her upper lip will drop down and back a little bit. If he feels that it looks good, he will then put a metal pin up through her lip to help stabilize it. He then will POSSIBLY close one side of her lip (the closer of the two). This is new information to us. We thought for sure that he was going to close 1 side of her lip...he told us that he would like to have "options" depending on how things go. We like the conservativeness of Dr. Wells. If he needs to go slower to make it look just right, so be it.- Tessa will most likely spend 1 night in the hospital. They only allow 1 parent to stay with her, so I am going to stay...I (Allison) will most likely sleep better in a hospital setting.- As soon as Tessa is out of surgery she will have to wear arm restraints for 2 weeks. :( Poor thing! She's going to need all the loving she can get...so everyone is invited over to the house to help cheer her up and give her EXTRA loving. Thankfully she'll have BOTH grandmas around to spoil her. Yes, my mom is coming out on the 14th to spend 4 days with us. :) We are so excited!- Feeding will be yet another issue. Her obturator is coming out this Wednesday and we're going to go back to the sirenge feeding days. Again, 2 weeks of this. Hopefully she'll adapt well.
Please, please, please keep us all in your prayers this week leading up to Friday.
(Tessa: bravery, quick recovery, little pain Us: confidence in Dr. Wells, acceptance of Tessa's new look, patience with the journey we are about to embark on, FAITH Dr. Wells: a steady hand, wisdom, a clear vision of what Tessa's lip will/should look like)
It gives me so much hope knowing that God is in complete control and knows how all of this is going to turn out. Fortunately none of this is in our hands but in His. Sure, it's going to be very difficult getting used to a new look on our precious little girl's face, but no matter what she looks like, she's still going to have the sweetest spirit glowing all over her face!

Wednesday, October 03, 2007

She crawls!!! She crawls!!!

Jordan FINALLY started crawling today at 1 year 4 days! We've been working really hard and when her therapists saw her today they were clapping and cheering. The whole room was ecstatic. It was so much fun.
Enjoy the show!

Surgery Update and Palmdale Visit





Well, thanks so much for your prayer for our appointment. The doctor got my hopes up by talking to his colleagues about how he is going to do the eye, also that he will fix the nose and the lip. He was talking as if he already planned on doing it during this surgery. I was ecstatic. I was thinking, "God you are SO good! I didn't even have to ask!" However, when he was all finished he told the nurse to schedule surgery for her tear duct clearing, her palate and just the little bump on her eye. I was so confused. Apparently he was just saying what he would "eventually do." I was completely deflated. I asked him if he would do it, he said he wanted to wait to repair it until later but didn't really seem to have any good reason for it. I instantly thought of something my father-in-law said recently. He was talking about how quickly we say how great God is when things go well/go our way but how slow we are to talk about His goodness when things aren't so great in our lives. Here I was being the classic example of that. I was certainly NOT "rejoicing always" or giving thanks in 'everything' as 1 Thesselonians 5:16 tells us we are to do (in fact that's the verse Sarah used for the devotional at Jordan's shower - how appropriate). Here I was disappointed and pouty like a child not getting my way. Rather than rejoicing in God's sovereign hand in my life I was fearing things of this world...that our insurance wouldn't cover Dr. Kawamoto later, that he would retire, that Jordan would be emotionally scarred by the things people say...I could go on but basically it was a lack of trust on my part. I am disappointed in my response but thankful that we have God's word to fall back on and to correct us. 2 Timothy 3:16-18 says, "All scripture is God-breathed and is useful for teaching, rebuking, correcting, and training in righteousness so that the man of God may be thorougly equipped for every good work."

After the appt Noah and Jordan and I went on to Palmdale to visit my family. My grandma has Alzheimer's and Parkinson's so we are really making an effort to get the kids up there more to visit. Noah LOVED it and had the best time! He went to my dad's house first and learned to feed the horses and mules, learned about gardening (of course he would not eat the veggies), led the horses around and even sat on a couple tractors. He and Jordan were such a joy for my grandparents and I hope, a breath of fresh air like they are to me, with their exhuberance and energy. We got home late last night and are off to Scooter's Jungle with Noah today as a reward for his excellent behavior at the doctor's yesterday. He was such a blessing!

Sunday, September 30, 2007

Jordan Turned ONE!!!

It's hard to think back to bringing her home one year ago.

Shannon was at the men's retreat through our church (Compass Bible Church - see link on our page) and I was supposed to meet the wives for a park date with the kids. I started having some serious contractions at around 8:00 in the morning. Somehow I was in enough denial that I was able to get Noah bathed, dressed, fed and loaded into the car and I even packed my hospital bag. As I was getting the car loaded and Noah was eating breakfast in his high chair I had to lay down on the ground in the kitchen because I couldn't stand up anymore - Noah was laughing SO hard thinking I was playing a game. I managed to drive myself and Noah to the park all while putting on lipstick and talking to Staci along the way (yes I'd put the phone down during a contraction - I'm not that much of a road hazard - hahaha). When I got to the park I had no idea how I was going to get Noah over to where the other moms were without having a contraction and having to lay down in the wet grass while they're all watching me walk up (they had now gone from 6 minutes apart to like 2 1/2 minutes apart).

Praise God I have some AMAZING and dear friends. They took charge. I only had one moment of a decent cry from the pain and just the thought that she was finally arriving and that there were so many unknowns. Sarah Cox took me to the hospital while the resident nurturer, Rebecca Millsap took sweet Noah to her house. Sarah insisted I'd be in labor for 12 hours or so and therefore I needed a shake and protein bars from Mother's Market. I sat in the parking lot having some MAJOR contractions, trying to remember what Sarah had just taught me about breathing through them, and here's Sarah hemming and hawing over which Power Bar to get me. Oh we laugh today!!!!
Even funnier is our hospital check in. Sarah is wearing a baseball hat and a grungy boy-type tank top while my hair and make up are fresh with a pretty sweat suit on. We were certain the check-in nurses assumed she was the "father" and it sent us into torrents of uncontrolled laughter. In between my 2 min apart contractions we were falling over laughing and the nurses were getting annoyed. :) I'm cracking up writing this! Our nurse insisted all I needed was a little water and that I'd be going home in an hour...I tried telling her that was NOT in fact the case. She didn't listen until she finally checked and I was dilated to an 8 or something close (is that right Sarah?). I had a near nervous breakdown over the thought of no pain meds so they rushed us in and made sure I got the epidural. I asked Sarah if she wanted to stay for the delivery and she was (oddly) overjoyed at the thought. I could not for the life of me think why she would want to see that, especially since I've seen it before in the mirror with Noah's delivery. It's really not a pretty site. She wanted to though and it was truly such a comfort having her there. While all of this was happening we found out that our friends, the Youngmans, had their triplets and were downstairs. Their daughter was 1 pound, not expected to make it and their two boys were 2 pounds. We cried for them and prayed for them and had an amazing perspective throughout our own delivery thanks to them.
Shan finally arrived by now and in about 20 more minutes I pushed a few times and out she came...beautiful, healthy, perfect, made in God's image! It was so great to finally see what she looked like. We felt a mixture of emotions - overjoyed to have our baby girl yet sad for the struggles she would be facing, and comforted by God's grace to sustain her throughout and to use her trials for His glory and her good.
One year ago...wow. Thanks to everyone for being here for us this year and for loving Jordan. Please continue to check the blog for updates this month.
Love, Jen

Happy 1st Jordan Joy!!!!

Monday, September 24, 2007

I was procrastinating getting to bed and was researching info on palate repair. I came across this info in a GREAT article which actually quotes Jordan's surgeon. This site gives the best overview of the cleft lip and palate situation I've seen.

http://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=502&action=detail&ref=49

Surgery to repair the cleft palate generally occurs when the child is about 1 year old and involves undermining mucoperiosteal flaps from the left and right sides of the palate and suturing them at the midline, and reconstructing the throat muscles. The most significant reason for repairing the palate is to preserve speech, explains plastic surgeon Henry K. Kawamoto Jr., M.D., D.D.S. “A child can have a hole in the roof of his mouth and still be able to eat OK—they adapt,” he says. “But with a cleft palate, they will never be able to communicate in terms of speech. Repairing the palate is, for that reason, very important.”

Another site I found, http://www.nagerormillersynd.com/NewArticles.html talks about how to deal with having a facial "difference." It's really great!

Also wanted to let you prayer warriors know that Jordan will not be having the eye surgery to clear the blocked duct tomorrow. We are going to have her plastic surgeon do it at the next surgery on 10/22.

Thanks and we'll post 1st bday pictures and pre-op udates as soon as possible.
Jen

Saturday, September 15, 2007

Two Peas in a Pod



How different can two kids be?? Noah hates having his hands dirty and is the pickiest eater around while Jordan relishes messes and gobbles up anything we put in front of her. The true test will be the first birthday cake. Noah cried when we put his hands in the frosting. We shall see what little JJ does with hers.
These are from some fingerpainting we did today. Noah was rather perturbed when we forced his hands into the paint while Jordan couldn't get enough. They are both so funny and so cute! Each so great in their own ways.

Mothering...

I had planned on briefly posting dates and details of Jordan's upcoming surgeries and development but decided against it. Following in the footsteps of most of my dear friends I will post my thoughts, my recent revelations and how they all tie into this next season or our life here.

I'm reading the book The Mother at Home by John S.C. Abbott and although it is taking me months to get through 123 pages I'm soaking it up (I sneak away any second I can to read a paragraph or a page). A section that struck me tonight is fairly long so I'll quote sections for you:

"The parent must strive to be herself just what she wishes her child to be. She must cherish in her own spirit those virtues and those graces which she desires to see as the embellishments of the character of her child...Would you have your children look to God sincerely, affectionately, cheerfully, as the Father and their friend - their sympathizer in joy, their comforter in sorrow? Lead them to do this by your example. Let them see this spirit in you...When disaster comes and sweeps away your means of luxury and even of comforts, when disease takes you from the busy cares of the household...then is the time, in which to show the loveliness and blessedness of confidence in God. A smile upon your countenance, a glance of confiding affection in your eye, a word of calm submission from your full heart, will then go to the hearts of your observing children, with great and effectual power...What child ever ceases to remember the life, the daily life, of its father and mother...this is your hour of conflict. Gain the victory yourself, and your child will gather strength from your success to struggle with her own temptations and sins...Say not that the annoyances and trials which you have to bear are too great to always be endured with equanimity. God lays upon his children no intolerable burdens." (page 77 - 78)

This section is both convicting and encouraging to me now. As I sit here looking at my calendar for the next two months (not to mention Thanksgiving and Christmas following suit) my eyelid continues to twitch. Ha! You think I'm kidding. Stresses of daily life, pre-op appointments for Jordan, well baby check ups, shots for her, blood tests, two surgeries, and her blessed first birthday rapidly approaching I find the need to, once again, remember who it is that has ordained all of this for His glory and my good. I need to remember that in challenge I should be most joyful. I am at home training two children in righteousness (trying at least) - what an opportunity this current series of trials presents!! I am even better able to put my words into practice for them to see my faith and trust lived out. They will remember these days and my actions and, Lord willing, take heed of my instruction.

John Piper's book What Jesus Demands from the World, in a section titled "Our Joy is Not Mainly in Prosperity but in Obedience and Pain" he writes this, "What's wrong is that the aroma of suffering is missing. For Jesus the demand for joy is a way to live with suffering and to outlast suffering. Therefore, this joy is serious. It's the kind you fight for by cutting off your hand (Matthew 5:30) and selling your possessions (Matthew 13:44) and carrying a cross with Jesus to Calvary (Matthew 10:38-39). It has scars. It sings happy songs with tears. It remembers the dark hours and knows that more are coming. The road to heaven is a hard road, bit it is not joyless." (p 87)

I have a friend whose husband is dying and is in constant pain. This has been going on for a very long time along with many, many other challenges in her life. Through God's grace she has found peace and joy in the midst of it and is a shining example to many wives and mothers I know. As I look at her life and then examine my own I find that the peace and joy is oft missing. Efficiency and order have been my idols. At the beginning of this new season I am praying for that to change. As you pray over our requests remember this present struggle of mine.

One last quote from John Piper, "We will take heart from the fact that Jesus offered himself to die for the forgiveness of our failures to rejoice in him as we ought...'The Son of Man came...to give his life as a ransom for many' (Mark 10:45). So our joy has this solid foundation: Jesus shed his blood so that our failures to rejoice in him might be forgiven." (p 89)

Dates:
Sept 25 7:00 a.m. - Jordan has her surgery scheduled to clear the blocked tear duct in her left eye. The opthamologist thinks it will be a routine clearing of a blockage in the duct but I am concerned that he will find that the blockage is due to an anatomical defect caused by her clefting (notice that eye is pulled down - our plastic surgeon says it is basically a third level clefting and that he wants to wait to reshape it until she is five). Please pray that it is a typical blockage that can easily be cleared. This is thankfully an oupatient surgery.

Sept 28th - Shan leaves for the Men's Retreat through our church (Compass Bible Church in Aliso Viejo)...yes the same retreat he went to last year but had to come straight to the hospital the next morning because I was in labor four weeks early.

September 30th- Jordan's 1st Birthday! Can you all believe it??? It's been the longest year and the shortest year all at the same time if that makes any sense.

October 5th - I leave for the Women's Retreat.

October 22nd - Jordan's next surgery. This one is a biggie. She will have her hard and soft palates closed by Dr. Henry Kawamoto. I still cannot believe my eyes when I read his name on our paperwork. Before she was born I said, "He's the best, we'll just have to get him. We'll find a way." Through a series of events that I saw as frustrations we eventually ended up with him, to no credit of my own. It's an amazing story too long to put in here tonight.
Jordan will also have her index and middle fingers separated and her toes "worked on." I am not sure what Dr. Neil Jones (the other doctor we said we had to have - yes all part of that great story) will do with the toes but I'm hoping they end up looking and functioning as normally as possible. He is skeptical that they will stay separated but I'm hoping he's wrong.
Someone forgot to tell Dr. Jones that I've waited a long time to paint my daughter's toes!
This surgery will involve both doctors and hopefully only one night at UCLA. My mom will be in town with Noah, thankfully, and we're sure that we'll be ready to get home afterward. As some of you know, there is no rest in a hospital - ironic. We will be hibernating for a week before the surgery so please be praying that Jordan does not get sick as they'd have to postpone the surgery.

Prayer Requests:
- That all of our pre-op appts and blood tests will go smoothly and will be positive.
- That Jordan's eye surgery will be simple and routine with no problems.
- The our family will stay healthy leading up to the surgery so that it will not be delayed.
...her speech is already delayed due to her palate and she has trouble eating hard food and has choked many, many times. It is very stressful for me and if we have to reschedule it could me months before they are able to do it.
- That we will be able to focus on the gift we have in Jordan around the time of her first birthday, cherishing this life that doctors said we could take. I can't believe when I look at her now that doctors told us we could kill her if we wanted to. A 'simple' decision in a time of great stress and she wouldn't be with us today. Amazing to think about.
- Jordan is still not crawling or pulling to standing and just has some funny things she does that we and the therapists are working on and watching. Pray that her development continues to catch up.
- Pray that I will be a godly example of joy and peace and self-control to my children as I am working to raise them up to love the Lord. That they will see Christ's love in and through me in the details of our everyday lives.
- Please pray for our friends' daughter, Tessa Joy, who is having her cleft lip surgery on October 12th at 7:30 a.m. You can see their blog at http://www.thefieldhouses.blogspot.com/

Tremendous thanks to all of you who faithfully check our blog even through my dry spells when I don't post anything.

Jen