Ten Fingers, Ten Toes

These pictures are of her left hand, the one that appears to be more severely affected. Notice that although her fingers are short (due to the webbing and the missing bones at the tips of the fingers) she still has a great thumb. The thumb was attached to the pinky so the fist was pulled tight but when she was three months old the band of skin snapped and her thumb was freed. Since then we've stretched it out so that the thumb is useful.

Here is the hand that appears to be typical. Most people think this hand wasn't affected but it seems that this one was actually more severe in the scope of things because her thumb is very short and only has the very first bone coming out from the palm. The tip of the thumb can be pulled out, moved and bent backward and forward because it is only skin. This is the thumb that her original doctor said he would remove. Since the base of this thumb is strong it is vital that it not be removed! Our current surgeon (praise God we got a 2nd opinion) is planning on stabilizing this thumb and making it a little longer. Notice the index finger is also shorter than normal.

So often we talk of checking to be sure our kids have ten fingers and ten toes before we heave our sighs of relief upon their delivery into this world. This cliche implies that as long as the ten fingers and ten toes are there all else will fall into place. We all know that many babies are born with less than ten fingers and ten toes and all is still well. We also know that it's an indicator of some challenges lying ahead for them. I thought of this when I was meeting with Jordan's hand (and foot) surgeon last week. He was describing to the residents how severely affected Jordan's hands are as a result of the amniotic bands that wrapped around them. He was trying to impress upon them that they will not typically see a case this "bad." Although I completely understood that he was speaking from a hand surgeon's perspective I also fully realized that that's all it was, his perspective - his clinical, surgical, "functional" perspective. I, somewhat jokingly, informed the residents that Dr. Jones is mistaken in thinking that this is a very severe case of amniotic banding, that most of the parents I've met online are fitting there 1 year old for a prosthesis or figuring out how their 8 year old can best use the little "nubbins" on his shoulders where his arms should be or they're teaching their 16 year old how to drive with their feet. From that perspective, Jordan's case is very mild. Everyone got a good laugh but it really stuck with me that I can choose to see Jordan's case as very severe and I can listen to the doctors saying that her challenges are going to be great and that there isn't much more they can do for her hands or I can see it from another angle. Yes, it does seem rather unfortunate that her longer, stronger thumb is on the hand with the weaker fingers that are fused together while her weaker, shorter thumb is paired with the more typical fingers on her right hand, I still choose the perspective that she will do all that she is supposed to do in God's will for her life. I could sit here all day and think about the things she may or may not be able to do later in life just for her to surprise us in the end (she is pretty stubborn for those of you who don't know :) ). My guess, though, is that my time pondering would be better spent praying...praying that I'm obedient in training her up in righteousness, that she will learn to love the Lord her God with all her heart and lean not on her own understanding (taken from Proverbs 3:5), that she would learn early to obey her parents in the Lord so that things will go well with her and she will live a long life on the earth (taken from Ephesians 6:1), and that she will spend her life being defined not by how severely she is affected by this circumstance but how fully her life can be spent for the Lord. If only we all had God's perpective rather than our own or that of the people around us. Imagine the possibilities.

For the clinical details since I mentioned them:


+ He will only probably do one more change on her hands. He will take bone from her leg or a toe (yes we do kind of like the ten toes/ten fingers thing and want her to keep all ten so we'd prefer the leg bone missing a chunk) and use it to lengthen the short wobbly thumb on her right hand. He will use pins which will stabilize it until it grows together. It will be only a little longer and won't bend - even after the pins come out. I can't picture it either - we'll have to wait and see how it works.


+He can't widen the web spacing between the fingers on her left hand (the shorter fingers that have been more cosmetically affected) like he anticipated because of the nerves in the fingers. He says the pinky on that hand won't be of much use and that she will have a sort of side pincer grasp rather than a stronger, straight on pinch.


+ He says he will do her surgery in August sometime so that it is before her 2nd bday.


---One year later, leading up to her 3rd bday, she will have her next facial surgery. Dr. Kawamoto will put in an artificial tear duct in her left eye, raise her left eye up so that it lines up more closely with her right and he will do another little touch up on her nose.



Thankfully that will give us 7 months or so for now without surgery and then after that we will have an entire year without another surgery, Lord willing. Imagine that! A whole year with no surgeries!!



There you have it - sorry the update is a bit late getting out. Our therapy schedule is still grueling but she is developing in leaps and bounds lately so we are encouraged.



Thanks for checking in!!!

63 Years

My grandma and grandpa (my dad's parnents) have been married for 63 years now and are facing some of life's toughest hurdles. My grandma has Alzheimer's, Parkinson's and Cancer while my grandpa recently had a triple bypass for the 2nd time around and now has an infection that has him beginning his second month in the hospital on a ventilator. He's been completely out of it until the past couple of days and they are hoping he will begin to get better so he can go home eventually. The top picture is of a visit my grandma took to the hospital last Saturday. It is quite a trip for her to make it from Palmdale to Hollywood to see him but it was worth every minute of all of our time to see them together. She came with lipstick on, her hair done and such a smile when she saw him. You can see her smiling at him in this picture. When they left he touched her face for a long time...look at the person next to you (hoping it's your spouse, ha ha) and imagine you both 50-60 years from now. Strange to think isn't it???? Imagine losing that person. So hard! We should never take for granted the people in our lives. We should invest in them for the long haul.

I'm posting this as a prayer request - that you would take time during your day, as believers, to pray on their behalf. Pray ultimately for God's will in their lives and for those of us around them to know what our part is in their trial. We are called to serve others and to love others but sometimes, practically speaking, that has challenges when our own lives are so full. The very least we can do for one another, as Christ commands, is to pray for one another.

Jordan and Devany Finally Meet

A week or two ago I took the kids up to L.A.to visit my grandpa and Jordan's little friend, Devany had an appt there so we met for coffee. I first met Shannon, Devany's mom, online. We both are members of a Yahoo group for cleft affected kids/adults and their parents/caretakers. Shannon said that her daughter's eye was also affected and since it's so rare I posted a response letting her know that Jordan's eye was also affected by her clefting. We talked on the phone for such a long time and have emailed since then. It was great getting to meet Shannon, her husband Henry and their little Devany. They live in Bakersfield so when Devany was born she had to be airlifted to UCLA because her facial cleft was so severe it was interrupting her vision and her airway. I think her mom told me she has had six surgeries and she is only 2! (Is that correct Shannon? You can post a comment if I have it wrong)

I'm so thankful that God has brought us together. I hope that Jordan, Tessa, Kylie, Devany, and any other little friends we meet along the way, can be friends for the rest of their lives. I hope they can share what God is doing in their lives and those around them through their trials. I hope they can struggle through their trials encouraging each other in God's sovereignty over their lives and His plan for them. I especially hope that through their unique situation they can come to a place of realizing their need for a savior in this fallen world.

Thanks Tessa, Kylie, Devany and others we've met and connected with for being our friends and for sharing this experience with us!!!! We love you and are so thankful for you!!!!

"Postural Insecurity"

Here's Jordan at therapy in the swing. She really loves it and is so cute in it. Her little hands hold on so tight. :)

Postural Insecurity

I know, it sounds like some psychobabble term coined by Dr. Phil or Oprah but apparently it's a common term among Occupational Therapists and Physical Therapists. We've always wondered why there were certain things she struggled with...rolling over (she didn't do it until 10 months and now won't do it anymore)...going down the slide, spinning her around on a blanket on the floor, tipping her backwards, playing in ball pits, etc. It all came together today when our Occupational Therapist thought to check her for "postural insecurity." They put her on an exercise ball to bounce and move her around, they put her in the ball pit, they tried putting her in a little rocking boat, down the slide, and every single time she freaked out. The only thing she tolerated was the slide and the reason for that is because I noticed she wouldn't go down the slide a while back so our therapist gave us some desensitizing techniques that have worked pretty well. I was a bit disappointed knowing that there is another legitimate challenge for Jordan and even more things for us to work through with her but at the same time I was ecstatic that we now know why all these things are issues for her and we are going to get a plan from our therapists that will help her.

From what I've read online and they've described Postural Insecurity is part of the sensory integration/disfunction category and is tied to the vestibular system (inner ear that deals with balance and position in space). Something is out of whack and it tells the brain that the body is falling or is not secure (I don't really know how to explain it and don't quite understand it myself yet). This explains everything! I have been wondering today if this could all be tied to her cleft, especially since it's more severe than a typical cleft and it goes up into her eye, tear duct, and also affected her hearing for a bit. I'm going to research it more and post what I find over the next couple of days so stay tuned. :)

Jen

Jordan takes her first steps...with help.

Jordan just started moving her feet to take steps! On Friday her developmental specialist was here working with her and we tried holding her hands and getting her to take steps. She actually did it! We've been trying this for months. We are still working on getting her to do it on her own while she is holding onto something but I guess that'll take some more time and work.

Sorry this video is sideways. I don't know how to change it. That's her physical therapist, Brian, helping her walk at therapy today. He just loves Jordan and gets so excited at any new development. We are so blessed to go to RH Dana!

Ahhhh domestic bliss.........

I used some Christmas money to buy a sewing machine today. Shan's grandma went with me to Target and we picked out my very first sewing machine. I came home, watched the dvd telling me how to set it up, went upstairs to find some things to use and made this beautiful burp cloth. I used an old shirt that no longer fits (finally able to take advantage of these extra baby pounds I have yet to lose) and some ribbon I had along with an old burp cloth of Jordan's. Actually it may look beautiful from far away and as long as you don't look at the back you might think I know what I'm doing. A close look will tell you I still need quite a bit of practice but it's a good start anyway. You can start placing orders soon. :)

How fun this homemaking stuff is!!!!

More to come.

Jen

Year's End

Cute Summer is the one on the right...

We are in Bakersfield ringing in the new year with our dear friends Gabe and Staci Woodward along with Summer Martin (see her blog http://www.summalovinn.blogspot.com/). Wonderful, wise Summer read this to Staci and I this morning and it really struck me. Thanks Summer!!!!

O Love Beyond Compare,

"Thou art good when thou givest, when thou takest away, when the sun shines upon me, when night gathers over me. Thou has loved me before the foundations of the world, and in love didst redeem my soul; Thou dost love me still, in spite of my hard heart, ingratitude, distrust. Thy goodness has been with me during another year, leading me through a twisting wilderness, in retreat helping me to advance, when beaten back making sure headway. Thy goodness will be with me in the year ahead; I hoist sail and draw up anchor, With thee as the blessed Pilot of my future as of my past. I bless thee that thou hast veiled my eyes to the waters ahead. If thou hast appointed storms of tribulation, thou wilt be with me in them; If I have to pass through the tempests of persecution and temptation, I shall not drown; If I am to die, I shall see thy face the sooner; If a painful end is to be my lot, grant me grace that my faith fail not; If I am to be cast aside from the service I love, I can make no stipulation; Only glorify thyself in me whether in comfort or trial, as a chosen vessel meet always for thy use."

The Valley of Vision A Collection of Puritan Prayers and Devotions Edited by Arthur Bennett

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

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.

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

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

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

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

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

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

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

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). :) :)

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