Merry Christmas

I sit here this Christmas morning, surprised to be waiting on two children to wake up. Well, maybe not. Gabe was up for a while last night, and he doesn't quite get the sense of anticipation just yet. Justin WAS up at 5 AM, but we sent him back to bed, and he is still sleeping. So Kendrick is patiently (no really, he is pretty content to wait!) waiting for his brothers to start shredding into the many colored packages around the tree.

Last night, after returning from the Children's Mass, we lit candles on cupcakes and sang Happy Birthday to baby Jesus and go Grandma Maggie - who shares this special birthday. We try to interject the true reason behind the celebration whenever we can, and they do a good job of paying tribute to baby Jesus right along with Santa. When Justin asked how Santa really knew if everyone was being nice or naughty, I told him since Jesus was everywhere, so He tells Santa. That satisfied Justin for now. We can only hope the magic lasts.

Our greatest gift this year is a happy healthy family. Gabriel was discharged from OT this month, just as we thought he would be. This was the last discipline for First Steps we were involved in. It was another bittersweet farewell as we move on in this amazing journey. I talked to the mother of an Autistic child last week and she mentioned that he has therapy several times a week with many different disciplines. It was a reminder that despite Gabriel's tenuous beginning, we are incredibly blessed not only to have him here, but also to see him function as a normal child. He had another echocardiogram this past Monday and we will get another xray next week to continue monitoring his progress and his patch, but we no longer hold our breath in anticipation of these results. We feel comfortable all will show that he continues maintain health and the patch is holding. Some day we know that these results may be different, but we are enjoying today and all that we have to be thankful for. Christ is here in our lives every day and we welcome the opportunity to welcome Him again and again - especially on this holiest of days. We wish God's blessing to you and your families and hope you can feel that same sense of awe and hope that must have been felt that first Christmas by shephards and kings alike.

Merry CHRISTmas!

One more thing

It seems that throughout our journey this past couple of years, there have been plenty of "one more thing" moments. This time it is a definite positive. Karen, our physical therapist, has officially discharged Gabe from PT. The goals we set just about a month ago have been met. Gabe continues to amaze everyone. She evaluated him to be sure he was really ready for discharge and I signed my last physical therapy progress report. As we talked about Gabe and thought back to where we started, I think she was tearing up a little bit, and I swallowed the lump in my throat. We've been so blessed with wonderful and talented people caring for Gabriel even before he was here. Our therapists fit right in. During yesterday's session, we probably did more talking than therapy. She frequently works with Ginger, our OT, and they talk about Gabe all the time. They are both amazed at how quickly this day has come, despite the odds. This is the first DH baby she has worked with who has left First Steps. Typically they still need some therapy beyond age three. What makes it even more amazing is not only how quickly he has achieved his goals, but how quickly he did it with the size and seriousness of his defect. We talked about that too, about where we started. She asked questions about the prenatal timeline and that first week at Riley. I went back to places in my mind I don't visit too often anymore and brought up questions in my own mind I may never have voiced. There are so many unknowns about his development and what happened - both how and why. They are questions that cannot be answered and do no good to revisit, but it's human nature I think. I relayed the shock we felt that first night when we learned Gabe might not survive. I remember the compassion of everyone involved and how they patiently tried to explain the unthinkable. I also remember falling asleep with my head on his bed and then being wheeled back to my own room to get some sleep so we could come back and face a new day and whatever it might bring us. I remember the questions that swirled around in my drug-induced fog of a mind and how they bounced into the events of the day and all we were trying to process. I remember thinking about the countless ultrasounds we'd had over the past months and desperately repeating to myself, "but I saw him practice breathing, how can we be faced with this now".

We talked and relived and in the end just did what we have always done, quieted the questions and enjoyed the moment. As it was the day we were discharged from Riley, it was a bittersweet day. A proud moment tinged with some sadness that we wouldn't see this person every week anymore. Such is life. We will likely go through it again next month as Ginger thinks our next OT session will also be the last one.

I just updated our family blog and the following is Gabe's excerpt of that larger entry, for those of you who are just checking in here. As always feel free to look in on the whole family if you like, sorry if it is a little long winded!

Gabe is coming right along in therapy and is likely to drop next month from OT and PT every week to OT once a MONTH and PT every other week. Amazing. Our most significant accomplishment is probably staying clear of the ER in over a month (knock on head). He has only been to the doctor for a flu shot recently, and last month's check up with Surgery and Pulmonary.

He is babbling more and more, starting to slowly add actual words and now has four consistent signs: more, eat, milk & please. He pretty much walks everywhere, looking very much like a little old man as he goes. This past Friday we made a quick trip to Indy for the members preview of the "Haunted Train" at the Children's museum and then a small reunion with some of the night nurses who took care of him. We haven't had much opportunity to visit with the night nurses, so we were very excited to stop in. Tabatha and Amanda fussed over Gabe's transformation from the last time they had seen him, and the boys' costumes from the party at the museum. As we were preparing to leave, we even ran into Dr. Rouse, who did a double-take seeing little Gabe the lion, accompanied by the Scarecrow and Tin man!! It was cute.

Walking!

Make a Smilebox postcard

During PT this morning, Gabe took about 10 steps!! He would take them 2-3 at a time, then stand a bit, but he took 10 steps before he sat down again. He began standing for extended periods of time just a few days after his last surgery, now the walking! It makes us really wonder how long this hernia had been bothering him and how much it had been slowing him down! Enjoy the video clips - and thanks for all of your prayers and support! We are certainly rejoicing this "big step" - all of them!

There's always SOMEthing...

Do I begin with last night, or Friday night? I guess I'll start with Friday.

I had to work Friday afternoon, so the first part is second-hand. Apparently Gabriel woke up screaming from his nap and didn't settle down easily at all. He then started throwing up and continued alternating between general malaise and vomiting for the rest of the afternoon and into the evening. When I got home from work, Josh and I took turns holding him, eating, feeding other kids, etc... Around 8ish, I went to change his diaper and noticed something different. There was a lump about the size of a large green grape under the skin just to the right of his penis. Well that didn't look right and I called Josh over. We didn't make the obvious conclusion right away, feeling just a little confused after all about something that we hadn't seen before, but as we were sitting on hold with the after hours clinic, Josh stated the obvious and I had a "duh" moment. Hernia - the regular kind. By the time the nurse came on, we pretty well knew we would be heading to the ER, being that it was now nearly 9 on a Friday night. That's where we went and much to our surprise, after explaining the situation, we pulled back the diaper tabs and our jaws dropped when there was no protrusion anymore. They did xrays to make sure there were no intestinal blockages, gave him some pedialyte and once satisfied that the vomiting was over, sent us home with instructions to return to the ER should it pop back out again. The rest of the night and all day Saturday, Gabe was fine. That night, it popped back out again - so I called in the calvary and hopped back over to the ER with the same results. After another couple of hours (Saturday night on a holiday weekend is not a good time to be in the ER) another doctor reconfirmed it had to be a hernia, but to take him home and get in touch with a surgeon Tuesday, when offices were open. He added that if it popped out again and we could massage it back in, we didn't need to come back. Sunday it did come out again, but I massaged the area, the lump seemed to fade away, Gabe was content, so we stayed home. Monday night (sounding like a broken record? I feel like one) Gabe really started to fuss around 7:30, I checked and sure enough, it was back out but he wouldn't tolerate any touching this time. He wouldn't even put his knees down when I picked him up. The ER docs and the on-call surgeon couldn't coax it back in either. So a little after midnight last night they took him into surgery and fixed it. We spent the night in the peds floor and just got home a little while ago. He is sleeping and I think I want to do that too.

NICU reunion

We RSVPd for the NICU reunion picnic at Riley on September 13th. Don't know how many from Riley still check here, but we are excited we will be able to go and look forward to seeing a lot of people who remain special to us there. That's really all I wanted to say, but since I am here, I guess I can update a little. Gabe has completely returned to his normal self, showing no ill-effects from the head-trauma, physically anyway. Psychologically, may be a little different. If he takes any kind of a tumble, he cries - sometimes screams. He can get quite dramatic about it. Hopefully this will improve. We haven't had any other medical appointments in a while, so I don't know if he will have "white coat" syndrome from his stay in the ER and PICU.

We are in the process of getting ready for the big yearly First Steps eval to determine what Gabriel will need in terms of services for the next year. Our OT seems to think that he won't qualify for her services anymore, which is bittersweet. Our weekly sessions are ultimately moving us towards not needing her anymore so it is nice to know we are reaching our goals, but we will miss seeing her every week. Our PT is in the process of trying to get some orthotic foot braces to help Gabe toward walking on his own. He rolls his feet inward when walking and standing, which she says a lot of little ones probably do, they just adjust and grow out of it - and don't necessarily have a PT around to notice a problem. The process is a little slow b/c of paperwork, but hopefully they will be approved. One concern is that we didn't include walking independently as a goal for this 6 month period, since we didn't anticipate needing it as a goal. Standing was one of our goals, so she is hoping that will be good enough to get them through First Steps. If not, we'll buy them. Our Insurance flex acct would probably cover it, but we don't put any money in it. It just seems like an interest-free savings account, so why bother.
Ok - time for bed!

CDH Awareness Petition

Apparently one organization is trying to trademark and have ownership over 'CDH Awareness'. This just seems very wrong to me. If you have a minute, please follow the link, read the information pertaining to a petition designed to stop this from happening. If you agree with the petition, please sign it. Thanks. If you do sign it, feel free to leave a comment or shoot us an email with your thoughts. Again, our email is jpwittmer@wowway.com

Here's the link:
http://www.ipetitions.com/petition/cdhawareness/