Last night I got a phone call from one of the therapists who has evaluated Gabriel for First Steps in the past. Her husband's cousin is expecting a baby with a diagnosed DH in January. She wanted to know if the couple could call us and ofcourse we were happy to agree. I won't guess what thoughts and concerns are running through their minds, I can only attest to what we went through. I do know what a comfort it was to have people going through similar experiences at the same time to lean on and also how helpful it was to have someone to talk to who had been where we were previously. That last sentence was a little long and confusing, but hopefully understandable...? Anyway, We met a couple of families with surviving DH children and I have met some other families online who were a great resource when we had questions or even when we didn't know what questions to ask. Please keep them in your prayers.

Also continue to keep the Marks family in your prayers. I heard yesterday that (3rd or 4th hand, so hopefully nothing got lost in translation) that his Dr. in Arkansas is comfortable with the current status of the tumor and it is "quiet". I believe he is getting ready to start Chemo soon and it is expected to be rough. Continue to pray for Matthew and his family.

Also keep my sister-in-law and her mother in your prayers. Her mother has been recently diagnosed with lung cancer. I don't think they know too much yet, but cancer is always serious. She and my brother will be with her for Christmas, so we pray they find some peace and joy in the season.

Praise and continued prayer

The benefit for Matthew was a tremendous success. Over $63,000 was raised! It was so humbling to be part of something that was so huge. The number of volunteers who worked for weeks and weeks was one thing, to see the number of volunteers who showed up to help was even more amazing. Along with the generosity of the volunteers were the number of people who came, bought tickets for the dinners, made donations, bid on auction items...it was incredible to behold. Amazing people rallied to support an amazing family and we were touched and honored to be a part of it. Continue to pray for the family. We still don't know anything about how treatment has gone, just that the family is waiting for results from the first round. We fervently pray for good results. All glory and praise to God!

Tonight at our "Why Catholic" meeting, we talked more about community and the importance and blessing of community. This past weekend was an excellent testimony to what being part of a greater community of believers means. You can pray and communicate with God on your own, and we all should, but it takes tremendous self discipline to maintain that relationship on your own. We know as well as anyone what a difference it makes to be a part of a group of people who share your burdens. I have gone through phases where I wasn't part of a group and thought I was doing fine. In all honesty, I wasn't really. There's comfort in numbers and the connection shouldn't be underestimated. Look at all that can be accomplished!

I have a prayer request from the Hufty's, our Riley friends:

Please pray for the family of a friend of mine that use to teach with me. Her youngest son is Jack's age and nearly drowned Sunday. I do not have the latest update, but he is in critical condition. They are waiting to determine how much his brain has swelled to determine the extent of damage. Pray for healing for this little boy, courage and strength for his parents, and understanding for his 3 year old brother.
Jack is starting to feel better. Besides his feeding pump deciding to stop working Friday morning and the home health care company not being able to deliver a new until almost noon, not much else has changed. We are trying to take Jack's oral eating to the next step, so please pray all goes well and he doesn't lose too much weight. He did cut his third tooth this week.
As always, thanks for your continued prayers!



Also, please continue to pray for the Marks families. There is a benefit planned in November to help with expenses as Josh's cousin, Matthew goes through treatment for his brain tumors. Please pray for healing and that the benefit is a huge success.

I haven't specifically asked for anything pertaining to our little family lately, but we would like to ask for your prayers that we have an uneventful winter. I look forward to the change in seasons - love the cooler air and crisp, spectacular autumn colors. I love getting ready for the holidays, and making plans with the families. But there also looms another cold and flu season we need to get through. The doctors are pleased with Gabe's progress and haven't given us any dire warning or predictions as we dealth with a year ago, but there remains risk of the unknown where his lung function is concerned. That risk and worry is markedly reduced and we are so grateful, but it is still there. We have already had a round of illness with all three boys and weathered it fine - Gabe is getting over an ear infection to boot. It's encouraging to see how well everyone has been able to recover, but we hope the early round of bugs isn't forshadowing of a long winter. Flu shots are set for Monday, so hopefully we can get (and keep) everyone healthy by then. Thanks for continuing to keep us in your prayers. We would like very much to discontinue our ER visits!

Please pray for Josh's cousin, Matthew, and his family. I blogged previously that his brain tumor had returned. This past week he underwent brain surgery for the second time and unfortunately this time they were unable to safely remove all of it. I am not sure exactly where things go from here, but they are returning to Indiana and will be working with their local neurosurgeon, Dr. Cobb. His previous recovery was nothing short of miraculous and we are all praying for the same result. He has a beautiful wife and daughter now, in addition to the tremendous extended family who all have more questions than answers at this point and are really hurting. Please, please hold them all close in prayer.

My aunt is going into surgery as well today, please keep her in your prayers as well.

Special Prayer Requests

First I want to request prayer for another DH family I just met over the phone tonight. We were introduced through Kaci, Josh's sister. Kaci called to speak with the mother and was astounded at the story she never expected to hear. Little Max was born in April with an undiagnosed left CDH. He was not doing well after birth and was transferred to Riley approximately three hours after birth. Fortunately he was born at Clarian West, just outside of Indy, or Mom feels things may have gone very differently. He went on ECMO at day 3, had his surgery the next week and ultimately went home at about 4 weeks old. We talked for almost an hour. Max's intestine, stomach, spleen were all twisted up and were brought out, untwisted and put back in place. He had some vocal chord paralysis and also deals with tracheomalacia. Because of these complications, he wound up with a trach, so this is a family with a lot to deal with. We had to go home with what felt like a lot of equipment, but they have twice as much. They are also dealing with a LOT of reflux - and that does sound familiar. We know they have a long road ahead of them, but we have hope to offer and share as we move forward. So many helped to pull us through and we welcome the opportunity to return the favor if called upon. Keep them in your prayers, the next winter will be especially challenging.

The next child I learned about through my Mom. One of the doctors that she volunteers with at the Hope clinic has a new grandbaby girl who is beautiful and special. She was born with a syndrome that essentially means part of her brain is missing. Lillie Grace has Dandy-Walker Malformation. Haven't had time to research it too much yet and haven't had contact with the family yet, except through Mom. Despite everything, she seems to be defying the odds and developing normally so far. Obviously there is a lot of uncertainty, but she has been born into a special family and has everything going for her. She has already touched many in her short life and is certainly destined to touch many more. Please keep her and her family in your prayers. I am pasting a portion of an update email Lille's mother sent out:


Hello family and friends,
We are so excited to send you this newest update. I must start by saying, PRAISE THE LORD!!. Lillie Grace has surprised all of her doctors. They can't find anything physically wrong with her through these first six weeks. She had her one month check up a couple of weeks ago and was doing everything a one month old is supposed to do. She is alert, smiling, pushing off on her feet, and eating all the time. She weighs 10 lbs. and 8 oz.! Her head and all of her other measurements are in the 75th percentile, which is awesome. We met with the neurologist this past Thursday and heard more good news. Dr. Boutiller looked at the MRI and confirmed the Dandy Walker but when she did her physical exam she could not find anything to be concerned about. We are not out of the woods yet but what a miraculous start!! We were concerned with what might happen but she told us not to look for trouble when there wasn't any. Our baby girl is truly a miracle and a blessing! I truly beleive that the prayers that have been lifted up are the reason for this wonderful update. We continue to ask for your prayers as the next few months are crucial to her prognosis. We love you all and will keep you posted as we continue on this journey. We look forward to seeing how God will use Lillie Grace in the future because we know she has a special purpose!
Love in Christ,
C. H.

Praise!

I meant to post this more than a week ago, but it has been hectic. I think somewhere along the way I asked for prayers for a friend's father who had bladder cancer. The initial prognosis was not very good. Last week I was told he had received a clean bill of health from both local doctors and Indy doctors. I don't believe this was really expected as when he had his surgery, the cancer had spread more than doctors had expected. He and his family endured some serious chemo and I know they are truly rejoicing over this. On another note, she is due to deliver their second child next month and these past weeks have been a bit bumpy, so I would ask for prayers that the remainder of her pregnancy goes much smoother and for the delivery of a healthy baby boy or girl.

Oh yes, my Aunt is also doing better and did not have to go on dialysis. Her surgery is still scheduled to go ahead as planned! More good news.

Too much noise...

I'm having another one of those nights. I should have gone to sleep over an hour ago. I tried, but couldn't settle down enough to sleep. My thoughts keep bouncing around in my head and the noise from the "little rubber ball" leaping from all of my random thoughts is too great. I am here to try and quiet the noise. There are so many people I have been praying for, and I am not always good about writing them down in one place. There are little notes here and there, but not all together as they should be. I am just going to start listing them as best I can and ask whoever still checks here to help me pray - as was the original intent of this blog.

Josh's cousin: he was diagnosed with a brain tumor - this story is nothing short of miraculous and not a short one - with no hope of a good outcome originally. Long story made short - found miracle doctor from Russia living in Arkansas and he got every bit of that tumor. He has a beautiful baby girl now! Bad news: tumor has returned and has a partner. I don't really know any more. The Russian doctor is out of the country and I think they are waiting to hear from him. Please pray for another positive outcome.

I know three people with dialysis looming. My cousin has been on dialysis for a while now and is on the kidney donor list. A friend of mine has a brother that is facing dialysis and possibly a kidney transplant as well. My Aunt has been facing the possibility for a while, but it hasn't seemed to be an issue lately. Appears that some bloodwork came back suspicious and she may be looking at dialysis soon. Hopefully the repeated bloodwork will have a different outcome. She was getting ready for surgery in August that will likely have to be postponed if she does, in fact, need dialysis.

Jackson Fleig will be having his hernia repair tomorrow - and also moving his kidney back where it belongs. I know his mother is especially worried b/c she is a pediatric surgical nurse and probably knows too much. Keep their entire family in your prayers - that surgery goes well, that the family can remain calm and steady (oh please pray for that one - it isn't easy to sit and wait and feel helpless - yet I know they will want your prayer efforts directed more so towards Jackson and his surgical team) and that little Jackson will be as comfortable as possible during his recovery.

For Victoria who just graduated from high school and is getting ready to leave for her basic training in the Navy. She is very excited and full of optimism. My prayer is to keep her safe and for God to reassure her Grandparents who are full of mixed emotions (understandably so).

I know there is more and it escapes me. The fog of sleepiness is starting to settle again, so hopefully I can get some sleep. It is going to be another busy week - I'll be working more this week than I have since Gabe was born since we will be short-handed more so than usual. I know I am up for it - and I am just going to keep saying that...

Also pray for someone else I hold dear who is sometimes here and sometimes gone. I'm not ready to lose this person yet, but don't know how to hold on and don't know how to help. This is all I know to do...

Away for a while

I don't know why I haven't been on this blog for a while, or if anyone checks it anymore. I guess life happens. I have still kept up with prayers, just not blogging about them. We've done a lot of priority shuffling over the past year with our family and our faith at the top of the list. A member of the family asked for a prayer request and it has jogged me back to this blog. As usual I will cut and past in her own words.

I ask that you add Jacob Rowland to your prayer sight. He is the son of our counselor at school. He is 9 months old and they are not sure what is wrong, but he has some form of cystic fibrosis and is not absorbing food. They are considering a G-tube and of course I thought of all you have gone through. Their family could sure use some extra prayers.


I have a few prayers to add to that, some confidential. I know someone struggling in faith and finances - pray for them please. I pray that they will see becoming bogged down in what is of the world is a distraction. I pray that they will be able to return to God and turn over their worry to Him. We have found in the past that when we are honestly able to do this, answers come. Somehow, they come. That which seems impossible is possible. Help us pray for this person. On another completely different topic - some of you may have seen on the news the story of the young Florida wife and mother who was kidnapped, raped and murdered. This is a tragic story, even if it stops there, but it doesn't. Another motorist was on the phone with 911 dispatchers, following the suspect as the young woman beat on the windows of the back seat. The other motorist gave dispatchers the street name and direction the car turned off on and this information was never relayed to authorities who were searching for the car. Losing someone in this way must be devestating, but also knowing how close this tragedy came to being averted and a young woman saved...well I can't imagine. This story has stayed on my mind and hasn't left me. I have prayed for the young husband and his young boys. I am sure he can't pray for himself right now. That's all.

Our dear friends and module mates, the Hufty's, had some big news on their own blog today. Jack, born with a tracheoesophageal fistula, Jack will get surgery to connect his esophagus and stomach on December 21st. The family has been waiting for news that Jack was ready for this next step for some time now, so this is exciting news. It will be difficult, I am sure, to be back in the hospital over the holidays, but good to get it done and behind them. Mike (Jack's Dad) will also be off for Christmas, so that will help with logistics and big brother Logan - Justin and Kendrick's buddy. Their site is http://www.caringbridge.org/visit/jackhufty

Here is an excerpt from their blog with their prayer request:
Thank you for all of the prayers you have said up to this point. We would like to ask for your prayers again during the next several weeks for our own Christmas miracle. We specifically ask that you pray for Jack to remain healthy leading up to the surgery, for Jack's lungs to be strong enough to handle the surgery, that the surgery goes well, and that his recovery goes well. Please also pray for the doctors, nurses, RT's, anesthiesiologists(sp?), and others who will be working with Jack. We have seen how powerful prayer can be and appreciate even the smallest prayers.

This week a teacher that use to work in my building found out that her 7 year old son Gunner has brain tumor that can not be operated on. This little guy is amazing. He was born premature (at 26 weeks) and he only weighed a pound. He survived that obstacle and has grown into a sweet little boy with little health problems but a few learning problems. He was a miracle and now he faces another huge mountain. I am asking that you keep Gunner and his family in your prayers. His family has set up a care page that you can view and see what a neat boy he is! www.caringbridge.org The page name is gunnergillespie

This posting is from Jessie (Beltz) Engledow, a friend from college and my sorority days.

Please add the following to your prayer lists.

Cooper family as they cope with the death of their daughter Naomi.

Gabe's Godmother, Jennifer, and her family as they face her father's cancer and his upcoming surgery. She also has an uncle with a fast growing brain tumor - the whole family desperately needs prayers and support.

Another friend who is facing appendix surgery and a dilemma about the holidays in the face of medical issues and job issues.

Everyone else listed in other postings as they continue their struggles.

Thanks.

Jarrett Kiesel

Today I ask that we pray for my baby, Jarrett. Jarrett has a severe and challenging diagnosis... the unknown. Jarrett was born 6/20/07. He had seizures inutero for months before his birth. Ten hours after he was born, he experienced a life threatening seizure, and continued to have seizures for months after he was born. Thanks to modern medicine the seizures are now controlled. He however does not have a diagnosis. It seems that the blood tests, urine tests, genetic screens, spinal fluids, MRI's, EEG's,EKG's and a whole slew of other testing should be able to come up with a"cause" for the "effect." However in our case, it does not. All of the pain that our little boy goes through on a daily basis is gutrenching, but he only shows us that with a smile. He is the happiest, most loving littleboy that any family can ask for. He has touched our lives in a way that no other person can even come close to. Today I ask for prayers for Jarrett, not for his diagnosis. A diagnosis is a word usually with a negative perspective, and that doesn't accurately describe Jarrett. Pray that his happiness and fun loving personality will continue, and pray that he will continue to help strengthen our family and our faith.

I love to keep up on the Riley families that I met. I think they are all extraordinary stories. I really think parents could learn a lot by just being involved with a sick child. One of the babies that I met at Riley passed away Sun. He was in my same module, and I talked with his mother occasionally. This little boy, Evan, is in the best place possible, Heaven. He was a true fighter, but after so long he lost the fight. Pray for his mother and family. They have had a tremendous loss. Darla Kiesel

Jarrett and his family were at Riley at the same time we were, and I remember vividly the day I met them. We were veterans by that point and my heart went out to them. It is never easy needing to be there, but as time passes it does get easier as you fall into a new routine - or maybe you fall into a blessed numbness of acceptance in the new day-to-day. The numbness is frequently shocked back to reality either through your own setbacks and changes in routine - or by experiencing it through another family you have become close to. I mentioned that in a previous blog that we all seem to go through a period of "aloneness" during the coping process, well at least it was true for me and for other families I have talked to. Sometimes you cling to others and sometimes you cling to yourself - if you are really fortunate you realize that even during those times you have to draw into yourself, you are still not alone but carried in His embrace. It is important to remember we are never truly alone and that our friends and family are there for us to reach out to, but I also think it is ok to accept those times when you just can't. As you pray for these Riley Families, take a moment to thank God for Riley, but more importantly for the nurses, doctors, social workers, maintenance/cleaning staff, RTs, PTs, OTs, SLPs, Audiologists and more people than I can list who make the care of these babies possible. The building is a structure, but it is the people who make the difference to those who need to be there.

Just thinking...

I have been thinking about the families of those who have lost their babies recently. Those mentioned here on this sight and those at Riley, those we did get to know and those we didn't. I don't know why they have been on my mind so much lately, except they continue to serve as a reminder of how close we came to that sort of unimagineable grief. We are so grateful for Gabe and still so heartsick for those who didn't receive the miracle they were praying for. Their courage and strength in the face of such a trial amazes me and reminds me to cherish those I love and strive not to take them for granted. My ipod helped me so many times when I felt overwhelmed. There were so many songs I listened to over and over, but there was one from Allison Krauss that keeps coming to mind. When we are scared or grieving, we feel alone at times, no matter how much support we have in place. This song carried me through those times when I felt isolated in my fear and worry. I never had to experience the grief.

A Living Prayer
Allison Krauss

In this world I walk alone.
With no place to call my home
But there's one who holds my hand
The rugged road through barren lands

The way is dark, the road is steep
But He's become my eyes to see
The strength to climb, my griefs to bear
The Savior lives inside me there

In Your love I find release
A haven from my unbelief
Take my life and let me be
A living prayer, my God to Thee

In these trials of life I find
Another voice inside my mind
He comforts me and bids me live
Inside the love the Father gives

In Your love I find release
A haven from my unbelief
Take my life and let me be
A living prayer, my God to Thee
Take my life and let me be
A living prayer, my God to Thee

Sorry for the lack of posting, I have been praying for everyone on this sight, and others as well, just haven't made the time to post anything. If any of you are following the Farland Family blog page, then you may have seen that another Trisomy 18 family delivered, and lost, their third child Sunday. I visited the Farland and Edwards' family pages today and read the sad news. I don't know any of them personally, but continue to pray for them. I hope you will as well.

I have another prayer request to add. My parents are helping friends of theirs sail their boat from North Carolina to the Bahamas. I pray that they have good weather and safe seas for their travels.

Kim has provided the website for Baby Hayden Shane. Keep the baby and his family in prayer - it's working!

Marcus and Alicia - Baby Hayden Shane was born on October 25 - he has a tumor on his tailbone and will require surgery after delivery in Cincinnati, OH possibly on October 26th.
www.carepages.com CarePage name: babymontooth2007
extra picture page - iniai.org/hayden

Baby Hayden

This is Kim Early (Drew's mom and Ben's wife). I have been meaning to send you this prayer request about a baby that is to be born today (I work with his father).

This baby's name is Hayden Shane. He is scheduled to be born by C-section at 8:30 am today (9:30 Cinci time) in Cincinnatti (8/25). He has a Sacrococcygeal Teratoma which is a large tumor on his tailbone. He will most likely have surgery tomorrow morning if all goes as planned and is expected to be in the hospital for up to two weeks. His parents names are Marcus and Alicia. They are very strong but need all the extra prayers that they can get.

Thanks so much,
Kim

We will keep baby Hayden and his family in our prayers - keep us posted!
Peggy

California Fires

A very close friend of mine (we've been friends since jr high school) who lives out in California took this picture and emailed it to me. I will post his email too. Please pray for him and his family as well as the firefighters who are working so diligently and selflessly to help residents protect their families and property. I know you all will come through.

Peggy

"This is an absolutely insane photograph from tonight, our firefighters are doing an unbelievable job! Foothill Ranch/Lake Forest is the city north of us.We are okay...staying indoors as much as possible, ready to bolt if we need to. The Santiago fire is about ten miles away, hopefully the Santa Anas will tone down and keep it at bay...The Westcoast HOs"

"

Angela Huntman told me about a courageous family going through a tremendously difficult time. Their blog says it all. When you get time, check it out and I think you will be touched and amazed at their strength and faith - we know the two go hand in hand. When we had our early ultrasounds and ultimately the amnio, this was the diagnosis doctors feared they would be handing over to us, and we feared we would have to hear. We were so fortunate Gabe's defect was fixable - you can't fix chromosomes. We may have been on quite a roller coaster ride, but it could always be worse. If you know anyone who has lost a child, for whatever reason, this site could offer some comfort - or at least hope for surviving it, eventually. Keep the family in your prayers, and as I have said before, if your children are healthy hug them tighter and be grateful.

http://conorbootheandgirls.blogspot.com

Update on the Anonymous prayers

Thanks for praying, even without the details. Two of the three have had dramatic improvements in the past week, so thanks so much for pitching in. One was a very likely cancer by preliminary tests that turned out to be clear, much to everyone's happy surprise! Praises!

The other has made some small improvements but still appears to have a long way to go, so keep praying!

There are 3 families I have been praying for that also need your prayers - but they wish to keep their stories private. Just pray for them as best you can without the specifics, obviously God will know.

Updates: last I heard, little Amanda is home and doing well. My Grandmother has gone into a nursing home, please continue to pray for her and her daughters.