Prayers for a friend

They say that CDH occurs in 1 in about 2500 babies...with a statistic like this you would never think that someone you know would also be affected. A few weeks ago, our friends Greg and Leslie were told that their unborn baby boy had a diaphragmatic hernia. Leslie is due the middle of August and they also have a three year old little boy, Cole. The couple has been through their CDH workup (ultrasound, ECHO, and MRI) at both Riley and U of M and have chosen U of M to deliver. Their initial prenatal testing is coming back with very encouraging numbers so far, but as we all know CDH is not always predictable. They have an amazing family and a great circle of support. Would you please keep them in your prayers during this long journey, that they will continue to get good prenatal results and peace throughout the planning and waiting for Baby Reed's arrival this summer? I have added a link to their blog as well...
A benefit is in the works for Greg and Leslie and will take place on Friday, July 8th from 6-10pm at the Shiloh in Huntertown. I will post more as it gets closer but we are anticipating a silent auction, kids games and activities, Texas Hold-em, giveaways, and dinner, for the evening. Currently we are still looking for donations for the silent auction. If you are interested in donating or helping out the evening of the benefit, please contact me! (carrielynn999@hotmail.com) Thank you!!!

Also, Baby Grace is in need of some prayers right now. She is also battling CDH in the NICU at U of M. She was on a great upward trend and is now hitting many bumps in the "CDH" road. The devestation of this diagnosis prenataly is hard enough, and to go undiagnosed until birth would be unimaginable. Please keep Grace and her family in your prayers....

Random updates....

All is quiet and well, which is always a good thing! Despite a small respiratory illness, Noah has been pretty healthy over the last month! We are cautiously optimistic that the c-diff and colitis issues are a thing of the past. He continues to do well in school and we had his annual IEP meeting a few weeks ago. He has displayed good growth over the school year despite his hospitalizations. We are continually amazed at the changes in him since he's been in this preschool program! His teacher still has some concerns in a few areas, one being his gross motor skills. He has very little core strength and very low muscle tone. They are recommending he start PT again and will he will most likely receive PT weekly during the next school year. They have also been observing that learning is very difficult for him. He has a very hard time with memorization, colors, number, letters, etc. Learning in general is a struggle. Based on these and other issues, he will continue on in the special needs program next school year and not mainstream into a community preschool. We love the program and strongly feel that the one-on-one learning environment is good for him. Although we would have loved to hear that he was ready to be mainstreamed, we are confidant this is the best decision for him.
In terms of feeding, he is actually doing awesome. The Neurontin continues to manage his visceral pain and as a result, his oral intake stays pretty steady (minus times of illness). Despite his efforts, he still isn't gaining any weight. Over the past year, he has slowly been backing down the growth chart. We've manged to get back what he lost with the past hospitalizations, but he is still on a truckload of calories (from the g-tube and food boosting), yet gaining nothing. His surgeon isn't sure if it's an absorption issue or metabolism issue. We will be heading up to U of M for a little CDH "maintenance" in the next few weeks and hope to meet with the dietitians to discuss some any ideas they might have. He is still on 10 hours of night time feeds and small tube feeds during the day and averages about 200 cal orally per meal.
Zane and Elliot are doing great! Zane's baseball team is unstoppable this year and he is playing great! He is still doing awesome in school and already anxious for middle school next year (gulp). He asked me tonight if he could start wearing cologne?? This from the boy who battles over taking a shower? I am wondering why the change, but something tells me it isn't for Mom...I am so not ready for this. Elliot doesn't stop from the second he wakes up till the second he goes to bed. He is always moving, talking (yelling), eating, and mostly getting into trouble. He has mastered the art of getting himself out of trouble with spontaneous displays of affection and dropping a few "I luff you's" when he knows he's done something wrong. They learn so early don't they?
That's about it from us! I never mind it boring!! Thanks for checking in on us!