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...