Just some funny pics from our concert time today after naps...so fun!

Update on Jordan's Therapy Progress

I have so many things I'd like to blog about personally but I figure many of you are checking in here to hear about Jordan, not my latest musings.
Two weeks ago I was getting discouraged once again. I tend to go up and down with discouragement as we work so hard with her and see no progress. God inevitably gives us a milestone or two to keep us going (every good and perfect gift comes from God).
Speech:
Jordan was not babbling, not using jargon (intonation of speech with no real words), not attempting words - only signing (more than one year delayed). Suddenly on Easter she started saying Papa (all the grand kids love their Papa so of course this is what she started saying). Then on Monday she just took off. She began babbling all kinds of consonants, and actually trying to say words. I was ecstatic. Her speech therapist told me later that she cried on her way home from work that day. Truly these milestones are so touching when you watch kids struggle for such a long time to meet them. I remember watching a 3 year old take her first steps without her walker last summer. I had seen her doing the hard work week after week in therapy and when she took those steps there wasn't a dry eye in the house.
Physical and Occupational Therapy:
We've had some problems with Jordan's leg brace she wears at night to stretch her foot down so she'll be able to walk later. Basically insurance hassles, financial burdens and appointments all over the place to figure out what will be the best choice for her. We are sending back the brace she has now at the end of the month and are starting with a new one. We aren't sure this one will work as well but it's a fraction of the cost so we're giving it a shot. We should have it next week to try and they said she can wear it more hours through the day so hopefully it'll be aggressive in it's stretch. If not, then we'll work to get the current brace back.
Development:
Her developmental specialist we see once a week has also been really excited about Jordan's progress. She is really pleased by her attention span and her skills that just keep getting better and better. We love Kathleen and are so happy to have her come to our house each week.

We are truly blessed beyond measure for Jordan's specialists. They love her and she is smitten by all of them. She works hard and they are commited to her success. Each and every person Jordan works with on a regular basis (including our pediatrician) really go above and beyond to help her.

Kathleen and Jordan


That same week she made such strides in Speech she started cruising along furniture. We were amazed. She just took off. I had the usual bribes waiting for her at the end of the table in therapy and she just headed down to me, took the treat, turned around, went back the other way then looked at me as if to say, "Well, aren't you going to come over here and give me my reward??" We were laughing so hard. Since then she's seen a higher level PT who gave us some great suggestions and now she is even walking along parallel bars and holding with only one hand. We have a bet going - I say 5 weeks until she's walking and Brian (her therapist) says 3-4.



One funny thing I laugh at is how much Jordan makes her therapists laugh. Her PT and OT call it the Jordan Party when we're there. She's so hilarious.

Quick Update on Great Grandpa

For those of you who were or are praying for my grandpa (my dad's dad) I wanted to update on what God has been doing in his life.

As a recap - he was gardening in the warm winter sun, driving his mower, and tinkering in his garage one day then in having his second triple bypass the next. He went in for a check of his heart because of chest pain and they needed to do another bypass. He hasn't been home since and that was mid-December. He had minor breathing trouble so they put him on a breathing tube and sedated him (buckets of Morphine) so he ended up on the breathing machine sedated for a number of weeks, maybe over a month. His 86 year old body grew weaker so when the family finally insisted the Morphine be reduced he was somewhat dependent on the breathing machine. They did a tracheostomy and continued to sedate him. In the process his heart has had some ups and downs and one week he decided to cease all measures. We went to see him, to say goodbye and my dad insisted they recheck all heart and breathing stats before making such a final decision. Ends up they hadn't checked his heart for months. Uggg. Upon hearing his heart was okay and the breathing issues were mental he was then ready to fight again. Within a week he was off the trach and breathing machine (with the help of a little Atavan (spelling?) - that stuff is great, Jordan was on it in the hospital too. He's since been moved to nursing/rehab facility and is doing oral motor exercises hoping to be off the feeding tube eating a hamburger and drinking an ice cold Coke soon. :)

Everyone is wondering if his muscles can regain enough strength for him to go home and if he'll be able to swallow enough to enjoy a Double Double but if it keeps going the way it has for him it shouldn't be a problem.

Personally I love going to see him. :) I love having time with him just to talk and encourage him and help him with his exercises. It's a long drive to Sylmar but well worth it. It's become a Sunday event now and this past weekend I took Shan and the kids with me. It was great and I would guess so good for him to have the kids there. Noah said that all Great Grandpa needed was a Band-Aid and he would be all better. Jordan just loved bouncing on the bed and pulling at the tape on his hand.

We really have so much to learn from older generations. As the younger ones we tend to think we know so much and that older family members couldn't possibly have anything to teach us that 's relevant or noteworthy. That couldn't be farther from the truth. My Grandpa still says that he doesn't think much about what happens after death so I'm praying that he will recognize God as his creator and Christ as his savior before his day comes to leave this world.

Pray for this please.

Here are a few pictures of my first official baby sling. I'm making one right now for a friend but I'm waiting for the metal rings to come in the mail. In the meantime I decided to whip up a sling for anothe friend's daughter. Tonight I gave little Reese Woodward her first baby sling to carry her baby doll in just like mommy. It was fitting considering the fact that Reese's mommy, Staci, gave me my sling. I will post a picture of all three of us with our babies in our slings. I made this one to fit Reese (a three year old) so it didn't take much material and I was able to find the smaller rings at Lowe's. It worked well as a trial.

Alison - yours is coming soon. I wonder if I should start taking orders...hmmm.

Before you jump in line you may want to look closely to see the lame stitching. :)

jen

More from Easter

"Grandma" (Shan's mom) and the kids.

One of their sweeter moments.

Aunt Vel

Aunt Vel was so sweet to Jordan (as always!). Since Jordan can't walk yet Vel carried her to the eggs then she'd set her down, let her put the egg in her own basket and Vel would carry her to the next one. I loved it - it was one of the sweetest memories from this Easter.

Here's Jayde - Noah and Jordan's cousin who also searched for eggs with the kids.

After dinner at Shan's parents we went down the hill to Vel and Dave's to hang out, and take the kids in the spa before heading home.

I do have to say that another of my favorite memories this year was riding down the hill on Shan's dad's Harley. It was AWESOME! The weather was perfect, we could see all the way to L.A. over the horizon and we were having so much fun. I asked Noah if he wanted to ride and our cautious son answered, "Um no Mama, I just ride in my carseat."

We love you Grays!!!!

Resurrection Sunday

Our church had a love Old Testament marketplace set up outside for Sunday School for the kids. During our Easter message they were able to experience first hand what it was like during OT days - a petting zoo, a giant bull wandering around, donkeys, dead fish, and the likes. It was really neat and Noah loved it! Jordan didn't love that it was 87 degrees out so we fed the animals, fed ourselves coffee and donuts and headed to Shan's parents' house.

Here are a few pictures from church and then Shan's parents house in La Verne where we spent the afternoon. We are SO thankful that they live close by (about an hour away) and that they are so involved in our lives. We love them tremendously and really appreciate their involvement and investment in our lives.

Celebrating Spring and Easter

Shannon's mom, Lana, came the week before to make butterflies with the kids so that I could get a few things done. She brought all the supplies (pretzels, caramels, black licorice and jelly beans) and had a great time with the kids. It was great to have her here and the kids love when she comes.

There's our butterfly - representing new life.

Eggstravaganza Report

Shan was such a trooper all week picking up the slack for me while I prepared for the Eggstravaganza. I had a great time doing it and loved having the kids with me while we shopped for the best deals on food (trying to be prudent with the church's money), loaded cart after cart and carload after carload with food and drinks all the while sharing with them the reason we were doing this entire event...to serve others in our community, sharing the love of Christ with them and inviting them to our church to hear the true gospel of our Lord and savior, Jesus Christ - the reason we celebrate Easter. I will admit that the "load" (no pun intended - ha ha) began to wear on them the night before the event when we were at Costco for one more load. The Costco employees helped load up 900 waters and enough oranges to feed a couple hundred while we were deciding on snacks for the kids coming. I was on the phone and heard the loudest screeching as I looked up to see Noah laying on Jordan in the shopping cart seat while her little hands were reaching grabbing at his face like she was trying to poke his eyes out! I couldn't believe it. :) We wrapped up our shopping and headed home to pack the car. Overall it was tons of fun and so great knowing we were serving others.


Here are a couple moms from my Navigating Motherhood group. I am so blessed to be able to spend Friday mornings with them! Melanie and Tiffany chatted for a while in the food area at Eggstravaganza. It seemed like they were having a great time enjoying the activities and the fellowship.

Our best guess is that between 1,800 and 2,000 people were there from beginning to end but beyond numbers were the converstations that took place. So many people had such a great time and are now planning on coming to church. I talked to at least five women specifically who said they were coming and since then I've seen three of them at church and one has had a sick child but wants to come soon. Our church is committed to speaking the truth according to God's word and therefore that's the best place for people to be spending their time. It is an amazing community of believers who care for others, who serve those around them and who are like good Bereans, studying God's word living their lives in light of the fact that they have a Holy and perfect God who has saved them only by His grace and mercy.

If you are interested in reading more about Compass Bible Church, their doctrinal statement, wht they believe and the current messages being taught go to www.compasschurch.org.
Our current series is on how to get eternal life (www.howtogeteternallife.com) and will continue for four more weeks before we begin our next line by line study through the book of Romans.

Delinquent Blogger

So sorry to all of you who faithfully check this blog - I've been pretty busy so I haven't updated the page lately. As a friend recently wrote on her blog, you would be amazed at how many blogs I "write" in my head as I go through my day. Insights, funny stories, great things I'm learning, updates on Jordan's progress, etc.

For sure I am planning on posting within the next day or so on:
- The Eggstravaganza
- Easter
- Jordan's AMAZING progress lately (praise the Lord!)
- Shannon's birthday blog post (yes he turned 35 this month)
- Death - In the past month two people I know have died, one has breast cancer and another is ready to give up. I can't help but post my thoughts on this topic.

Stay tuned and thank you for your patience. :) :)

Oh and how do you all like the new look??? I LOVE this background!!!!

Jen

EGGSTRAVAGANZA 2008 IS HERE!!!!!!!!!!

I'm posting this Eggstravaganza flyer on my blog so that you can all pass it on! Please tell people about this fantastic event that is coming up on Good Friday, March 21st from 930-1130. We will be offering FREE lattes, bounce houses, face painting, balloons, goodie bags, Easter egg hunts for all ages and much, much more!

TELL YOUR FRIENDS, TELL YOUR FAMILIES, TELL YOUR NEIGHBORS!

I hope to see you all there - you will find me in the food area (not eating the entire time but working - ha ha!)


For more information: 949-540-0699 or www.CompassChurch.org

Jesus Loves Noah!!!!

Compss Bible Church Marriage Retreat - Take One

Here's my sweet man! Doesn't he have a great smile? Normally Shannon has NO patience for pictures. If I don't get it right the first one or two tries he's over it and refuses to try anymore. The problem is that we have two kids under three and also have to take into account the fact that Shan likes to blink at every flash. We never get the shot right the first time. Last night, however, Shan was willing to pose all night long to get a good picture just to get out of dancing!

The decorations and set up were SO fun and so well done! the people in charge of throwing this retreat did a wonderful job and every detail was thought of. Great job!!!!! (I forgot to rotate the picture - sorry)

Alison and Cheyenne Kroeker are a couple we've known for a while now but have yet to really get to know until this weekend. We LOVED sitting with them finding out about their "unique" stories. Thanks to Cheyenne's colorful past we won the table contest the first day and were able to eat lunch before anyone else. Just a few details...he was born in Vietnam (or was it Guam?), he has been to nearly every country, he has been in a plane crash, has had a collapsed lung, eaten alligator and pirranha, and was adopted (the list really does go on and on but I can't remember all the crazy details). Alison is also interesting in her travels and as a surprise to me, was raised in China. We had so much fun with you guys and miss having meals with you already!

Another couple we love dearly are the Youngmans. Our bond with them started at Pacific Coast Church a few years ago and has grown since their triplets were born the day before Jordan at the same hospital. We were able to pray for each other through our individual trials one floor apart at the same hospital at the same time. Their challenges with their babies really put our struggles and anxiety for Jordan into perspective. I was in labor getting updates, knowing that their babies were fighting for their lives one floor away from me. It was a huge blessing to me because it really caused me to pray for and weep for them as they were praying and weeping for their children. As our babies have grown into toddlers we've also shared doctors, hospitals, therapy advice, and resources for our girls. I'm hoping that our friendship will grow even stronger through the years and that our kids will also grow a love for each other that sees beyond challenges and differences. Thanks Darren for being the volunteer photographer for our church and for giving your time and resources so generously! Thanks also to Lisa for volunteering her time with Navigating Motherhood! I am so excited to see lives changed through her and through her testimony!

Another (one of many) funny Cheyenne stories...we had an amazing steak dinner last night and afterward while we were sitting around waiting for the country music to start so Shan could work on his moves, Cheyenne at a pile of mint candies. Everyone thought he was just really enjoying them but as it turns out he thought they were the dessert! We laughed so hard! None of us missed the dessert table with hot coffee, tea, brownies, and warm bread pudding! Good one Cheyenne! :) :)

I plan to post more about the messages, the teachings and what I am taking from this weekend. It's just too late tonight so I'll write more tomorrow or Tuesday.

Thanks for being faithful bloggers!

Home Sweet Home!

Shannon and I were at our church's marriage retreat this weekend. I'm planning on posting about that soon but first I wanted to share some pictures and talk briefly about how blessed we are in our lives.

Shan's parents watched the kids while we were gone and Peter and Kristen Freska took care of them until Shan's mom could get here (our faithful, loving friends who ALWAYS come through in a pinch for us - Jordan's first birthday party was at their house due to rain...they called us to offer their home and wouldn't take no for an answer!). It's funny how getting away really makes you appreciate what you have at home. Although our hotel was amazing and the friendship, teaching, and great food was all wonderful there is truly nothing like home.

When we got home today Shan's parents took us to our usual spot in San Clemente - Fisherman's at the SC pier for wings and chowder. It was the most beautiful sunset, Noah was cracking us up singing Blessed Be Your Name (how right he was in choosing that song!), Jordan sat in Daddy's lap watching everyone go by and we played on the beach afterward before going home to roast marshmallows ("marshmans" as Noah calls them) in our fire place. We have been realizing lately how VERY blessed we are to live in beautiful San Clemente near Shan's parents, close to our church, surrounded by our friends.

We know that God is good regardless of our circumstances but coming home to our family and friends in San Clemente is such a blessing!!!

Stay tuned for my posting on the marriage retreat...

Jen

Home Sweet Home

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