I didn't realize it had nearly been a week since posting! That is life. Yesterday we were back up at Riley for a Neuro appointment. They are pleased with his progress, and ofcourse that there has been no more evidence of any seizures. We are officially weaning off of the phenobarb. In about 7 weeks, it should be gone. We aren't going back until early May, so we are slowly starting to see some daylight between doctor visits. On a sad note, when we went up to visit the NICU we found out that one of Gabe's module mates passed away sometime in the past month. We knew she had a lot of issues, but always thought there was hope she would go home. Some of you may have known the Coopers. Little Naomi was quite a fighter and we were very sorry to hear she was gone - but also realizing she was frequently an unhappy little girl and at least that is over for her. She was right across from Gabe, so it was impossible not to notice the bad days (sorry nurses, I tried to be oblivious). Our thoughts and prayers are with the family, and also all those who got to know her so well while she was there. I know it isn't easy for any of the docs/RTs/nurses to lose a baby, but I am sure it is rougher when one has been there for so long.

We give thanks...

Happy Thanksgiving. What do you know, I am getting to post today! It is 8:00 AM, and I am still the only one awake - I'm giving thanks for over an hour to myself with my coffee! I'm sure that time is drawing quickly to a close, so this will be brief....no really it will be....ok, I can just hear the eye rolling and doubt over the internet waves. You can stop it now.

It seems that the last several times I have been in a store that has music over the intercom I have heard Natalie Merchant singing "Kind and Generous". That is the song we set the slideshow of everyone at Riley who guided us through our time there. If you search around, we posted it a couple of month ago and you can peak at it again if you want. Ofcourse now every time I hear it, I can't help but think of all the help we have had these past 6 months. Actually, our gratitude extends back nearly a year, to all of those who helped us arrive at a diagnosis. We have spent so much time expressing our gratitude to everyone at Riley (and deservedly so) however I fear I have been remiss to all those who got us to Riley. Without their efforts to get us answers, all those at Riley who worked so hard would never have had the opportunity to work their miracle. So, on this day of thanks - Thank you to everyone in Dr. Riley's office, Dr. Turnquest-Wells' office, Dr. Padilla's office, Ohio Valley Heart Care (2 echocardiograms), Dr. Voyles' office. And ofcourse anyone else I may have missed. Along with that - to all of you, our family and friends (new and old, and those we haven't even met yet) who prayed for us, sent us words of encouragement and lifted us up when we have needed it most. So we dedicate "Kind and Generous" to all of you (quick special thanks to Shannon VanHyfte for helping me locate the lyrics). Natalie Merchant says it better than we could ever hope to express ourselves. Happy Thanksgiving to you and yours!

"Kind and Generous"
Natalie Merchant

You've been so kind and generous,
I don't know how you keep on giving
For your kindness I'm in debt to you
For your selflessness, my admiration
For everything you've done, you know I'm bound,
I'm bound to thank you for it....

la la la la la la la la la ...........................

You've been so kind and generous,
I don't know how you keep on giving
For your kindness I'm in debt to you
And I never could have come this far without you
For everything you've done, you know I'm bound,
I'm bound tothank you for it....

Na Na na na na na na na na nana na na na na na na na na na

Oh, I want to thank you for so many gifts you gave with love and tenderness,
I wanna thank you
I want to thank you for your generosity,
the love and the honesty that you gave me
I want to thank you, show my gratitude, my love and my respect for you,
I wanna thank you
Oh I want to thank you, thank you, thank you, thank you, thank you, thank you...

As I mentioned in a previous post today, Gabe is getting stronger every day and can tolerate more and more. The picture up and left shows the "bench" work recommended by PT. It has done wonders in getting Gabe to lift his chest and shoulders. I forgot to mention that b/c Gabe's shoulders are a little high, we are doing neck stretches as well. He isn't too crazy about those. I finally got just a few more pictures posted. If I don't get time to post tomorrow, Happy Thanksgiving to every one. We obviously have so much to be thankful for- thanks for your comment Susan! We will be thinking of all of you and hoping that your holiday is as special and meaningful as ours. If you are "lucky" enough to be in the workforce tomorrow, then we are especially thinking of you and your family. Josh works tonight and tomorrow night, but we'll all enjoy dinner together. To our family members we won't see, we love you and ofcourse we will be thinking of you and praying for you. It is going to be a rather intimate gathering for us - so there are a lot of people we will miss. At the same time, we will be thankful that our reasons for not being together this year have nothing to do with illness, or hardship. Happy Turkey Day!!

Sorry for the delay in posting - it has been a busy week and we continue to have computer issues, so it is even harder to work computer time into the schedule. On Saturday, Ginger Whitler (OT) met Gabe and began working with him on oral stim. She has worked with DH babies before and we hear she is the best! Her husband is also on the police department, so we have a lot in common. She was absolutely fantastic with Gabe and I think he responded reasonably well to the stimulation exercises. She was back yesterday and we learned even more. Between the PT and OT work, I think my head spins sometimes trying to figure out everything we need to do with him. In OT she has us working on desensitizing Gabe orally and by deep "brushing" & joint compression. In PT we are working on Tummy time, he sits on the ball and works on his trunk strength and we also do some "bench work" in which we use a cushion and Gabe kneels in front of the cushion and has his elbows propped on the cushion. It is working wonders for his ability to lift his shoulders and even his chest off of the floor. It seems like he has really taken off in the past few weeks. He can sit in the bumpo seat for up to 10 minutes on a good day with minimal assistance now and his reflux has gone way down. He doesn't even reflux every day anymore!! We have actually gone through an entire day without having to change his clothes! Gabe is also "talking" a lot more. He uses his lips and tongue to shape his sounds now. In fact, he is chatting away from his blanket on the floor as I type this. Justin and Kendrick are off of school for the holiday and are playing with their "Cars" race track in another corner - I actually just returned from settling a racing dispute. All was settled peacefully and no drivers were ejected or fined. For the moment, and I am certain it will be brief, all is quiet and under control.

I finally finished Dungy's book "Quiet Strength". It is a very worthwhile read, even if you are not into football. I was getting ready to put it away for the night when I got to the section about his son's suicide and I couldn't put the book down. Their story of strength and perserverance was nothing short of amazing and inspirational. They reached out to so many, even in the midst of their own grief. In one excerpt, Dungy talks about a father who wrote to him, worried that his own son may be contemplating suicide. Dungy actually wound up calling to talk to the father and son, who did not kill himself. As a family, they were able to turn their grief and pain completely over to God, which allowed so many good things to result from something so terrible. The book also gives powerful insights into all that is still good in the world of professional sports. You hear all the time that there are fewer and fewer role models for our kids, but I don't think that is true. All that is wrong with the world seems to make better headlines, but that doesn't mean I buy into it. I have seen first hand that there are plenty of great people for my boys to look up to. One says he wants to be a policeman and the other a fireman - how's that for hero worship? Appropriate, I would say. And as they get older if they should decide their heros are professional athletes, as many young boys do, I have restored faith that there are many out there I woul be happy to have them emulate - even if they don't make headlines. Another reason I am a proud Colts fan - win or lose. They seem to understand what is really important in life and many of them choose to follow the tremendous lead of Christian values, hard work and perserverance set forth by their leadership. We saw players at the hospital this summer and Kaci (Josh's sister) told us of a player who visited the injured husband of a teacher she works with. Most are active members of their churches, frequently sharing all that have been blessed with and ministering to those who are struggling. Whatever the stats may say, or the scoreboard (which is also usually GOOD) all of the good they have done and will continue to do sum up my definition of real men - those are the stats that make them heros. Performing well and winning games just helps get peoples attention and provides a platform for a more important message about what really counts in life - that was clearly outlined in the book.

Ok, I am off of my soap box. Time to get back to the many tasks at hand. We got some PT in, but time to get some feeding work done. I'll try to post more pictures later.

Update

Tuesday was a busy day for Gabriel. We saw Dr. Rouse around 11:00 AM and he was quite pleased. Everything looks great with Gabe's Gtube - Dr. R said it had healed up nicely and the granulation tissue we were battling is virtually gone. I let him know that Gabe had just recovered from an ear infection - actually still fighting the fluid. We went in to see Dr. Logan on Monday b/c I thought he looked a little "fleshy" under the tongue. He loves to cluck his tongue and I got just a little concerned. Maybe things are going so well with the usual issues I feel a need to scrutinize for other potential problems. Dr. Logan told us there was a little extra tissue under the tongue, but nothing that would be a problem. His ears however still had fluid in them, but no infection. So we are in "wait and see" mode, but I'll take a little fluid in the ears over fluid in the lungs. Dr. Rouse confirmed that the lungs were perfectly clear! Gabe is now weighing in at 15-15! They didn't measure his length, but we will be going in for his 6 month check up in two weeks, so we will find out how tall he is then. Can you believe what I just typed? His 6 month check up. It doesn't seem possible, but there we are.

We got home from our appointment with Dr. Rouse and promptly met with Karen, our physical therapist. We spent some talking about Gabe and his history (don't worry, I kept it to the condensed version - she had most of the history) and then she put him through his paces. He tolerated it all very well and we got some good tips on how to work with him more on our own. I got a picture earlier, but the computer is acting up, so I will count myself lucky to get this posting saved - the pictures will have to come later. We will meet with Ginger (OT) on Saturday for the first time for oral stimulation.

In closing, if you have a minute there is an update on the prayer blog regarding another special Riley family - they are local (from Haubstadt). http://chainofprayers.blogspot.com

Gabe is continuing to try out new tastes and textures - I believe he has rated squash in the dislikes category, but carrots seem to be going over very well! I have some carrot pictures, just give me a little time to get them posted. It's almost time to get everyone going for school. He is also laughing pretty easily now, and is very ticklish like his Dad and brothers. He has rolled all the way over, but just a couple of times. He also doesn't push up very well on his tummy, but that is why we are getting the PT, hopefully soon.

Justin hit me with more "Life" questions last night. If you will remember last winter we dealt with the "Where do Babies Come From" question, which made sense and I was kind of prepared for, considering the circumstances. Last night I was not prepared. I am tucking him in and as I lean in for the kiss, he asks, "Do people die in the winter?". ....uhhhh? So to stall as I search for an answer, and to help answer the question better, I chose to probe into the root of this question. After some questioning, it turns out they read a book about the Pilgrims at school and the hard winter in which many grew sick and died. I felt more competent to answer now, so I explained the difference in the times when the pilgrims lived and the conditions compared to our situation and that he didn't need to worry. Well, if you know Justin, then you know that isn't the end of the conversation. This lead to "if we get sick, do we die", which I fielded ok I think, but that one lead to "But if you die, do you get to come back sometimes?". So now he had switched into more personal mode - he wasn't asking about death in general, he was asking about my death. How do you stick to the truth and still calm his fears? We are not stork and cabbage patch people, we try to be honest (well, at this age we go for the "swiss cheese truth" - it may have a few holes in it) but he is crying now, so what do I say? Well I'd love to tell you that I ever so eloquently explained it all, he smiled and rubbed his little eyes and then rolled over and fell promptly asleep while I congratulated myself on another successful parenting moment....but we all know better. We got through it - talked about visiting in dreams, family pictures and videos and how the people we love come back when we think about them. We talked more about prayer and Jesus. He was satisfied enough that he did eventually go to sleep, but even as I left the room, after the tears had been dried and noses wiped, I could tell the wheels in his head were still turning.

Oh, and while all of this was happening, Kendrick was popping his little head over the rail of his top bunk inserting his own thoughts - the classic one:
"Mommy, I'm shy",
"what?",
"I'm really shy!",
"Do you know what that means?",
"Yes, it means when you're gonna die".
Ofcourse he is grinning all the while, as he does. I think I need to ask Miss Pat if they are working on rhymes in preschool.

Happy Halloween

The boys had a great time on Halloween. Since the weather was so perfect, Gabe came along in the stroller. I think he enjoyed his first "trick-or-treat" experience. We thought the choice in costume was appropriate. I'm sure he'd love the chance to "pick" on someone for a change, instead of being the "pickee" all the time. The scrubs actually came from my Aunt Pat, and the Children's Hospital in Denver, when Justin was a baby. The mask (featured below) is from the older boys' dress-up collection and the scrub cap is a summer cap turned around. So, let's hear the comments - what did you or your kids dress up like?

Results

Ok, we got the results yesterday afternoon, but things have been nuts (nothing new nuts - just nuts as usual nuts). Well, one new thing. The wireless link went out on the laptop, so I have to go down to the basement to use the computer - it is amazing how just that one extra step makes computer use so prohibitive! Fortunately we got the warranty coverage we almost never get, so we are awaiting the packing from HP to send it off.

Back to the results. Better, as we anticipated, but not quite as much as we were hoping for. He did have some desaturations while sleeping down to 84 (that's the oxygen), so Dr. Macke is reluctant to take him off of the O2 just yet - we didn't really believe he'd get to come completely off of the O2, just maybe during the day, but no dice! He is down to 1/4 liter, so that is a big drop from where we were. He is still having some obstructions, but they were reported as less frequent, shorter and no total obstructions. Now for the big one - the CO2. Remember our first study showed an average of about 57 with peaks in the 90s, last average was 44 with a peak at 53 - Now for this one.......are you ready? Average was 39 with a peak of 48!! Not a huge difference from last time, but look at where we started! He wants us to get another full night study Tuesday, December 18th - so we will get to visit both day and night shift again! I have to put a positive spin on it anyway I can. We actually thought we might skip one month of journeying up to Indy, but that's ok. We will be there November 27th for Neuro, Dec 18th for the SS, and the last week of January for Dev. Peds and another swallow study.

That's the medical news. In other news...you may have wondered why I have not posted or emailed Halloween pictures - b/c normally they would have been up that night. Wellll...the camera has been misplaced, again. And it is not a conspiracy/secret campaign to get a new camera, don't listen to Josh. As soon as I find it, we will get the boys in all of their Halloween finery up for you to see. They were pretty durn cute, if I do say so myself.