For The Curious: Our PA Home

Pics of our new house, including Gavin's playroom. Note: I've omitted all the messy rooms, excessively wallpapered rooms and unpacked boxes. Enjoy!

Gavin's 1/2 of the Basement; his "play area".

Living room

Dining Room

89 Marwood Dr. Pittsburgh

Gavin, October 2008

Gavin is doing great. We've almost forgotten that he had surgery so recently.

This week has been uneventful. He was a bit sluggish earlier in the week, but by Wednesday, we were out about town, as usual.

Thursday, Gavin got to go to his new friend's house. Our neighbors have three kids, one is a 3-year-old adorable little boy. Gavin had so much fun and didn't want to leave, which pleased me immensely. Yeah, we've got a neighborhood friend to play with!! We also went shopping for costumes, with no luck. So, I think we're going the homemade route, unless it looks too crazy once I finish. He's hopefully going to be a puppy.

Gavin learns to "make a wish", tossing coins into the mall fountain.

Friday, we worked all day on Gavin's play area. Half of the large basement room will be dedicated to all of his toys. We went to Ikea last night. Gavin loves to say "Ikea", as on the ride he kept saying "Go to Ikea" in his amusing monotone voice (think Pat from Spongebob). We got a new rug and little kid chairs, along with more toy storage bins. (I'll post pictures, when the area is complete.) Oh, and another social improvement he's been working on - whenever we're in stores now, he loudly says "HI", again in the funny monotone, to various people. The most fun of the evening was Ikea's $1 ice cream cone that Gavin really enjoys, a huge breach in the food aversion barrier!!!

Today we weathered the rain (and cold) to go the the neighborhood Halloween Parade. I enjoyed the marching band. Gavin liked the fire truck, but really only tolerated this event for about 15 minutes. Fortunately, we didn't miss much when we left, as the remaining parade consisted of numerous preschoolers dressed up in their (wet) costumes.

We're having a relaxing weekend, enjoying Gavin and our time together. Enjoy the pics.

Newsflash: Gavin eats icecream now! Praise the Lord!!

Gavin with Daddy @ the Parade!

Gavin had a great day. Each day starts a little grouchy, but he recovered nicely. In fact, tonight he was absolutely adorable, running around the house smiling and babbling a lot. Today, we've watched Tigger&Pooh DVD 6x, so he's saying all kinds of things from that video.

Mike and I were able to go to church this morning, while Gavin slept in and stayed with the nurse. After church, we took him on his first post-surgery outing. We went to the park, where he opted not to get on any of the equipment, except for the swing. We walked a lot. He enjoyed the leaves. He wasn't as "wild", running everywhere, and he didn't smile as much, both indicators that he was distracted by his back. However, I was very pleased with the activity. I expect that by the end of this week, he'll be ready to climb.

Post Surgery 10/16/08. 9:00pm - trying to be brave.

Gavin's at home! Yeah.

We went back to the hospital this morning and he was doing well. He was very sore and grouchy. He had a good night, somewhat restless, as each time a nurse or doctor nears him, he would get very upset. So, imagine his irritability this morning when doctors made rounds! He rested a bit this morning, but by 12:00pm, his discharge paperwork was complete, so I woke him up to bring him home.

Wow, it's amazing to have this hospital stay seem so easy! Post surgery, we check out, load him in the car and drive 8+/- miles home. There was no baggage to load - we hardly brought anything with us. No concern for his trip home - it took 20 minutes! So, upon arrival home, he stayed on a makeshift bed in the living room to watch TV.

The afternoon was rough, as he was very tearful and sore, not wanting to move or be touched. He had a low-grade temp, and I was a bit concerned that it would escalate as a precursor to something worse. After a 4-5 hours of sleep and several doses of pain medicine, he seems more like himself. He actually walked to the bathroom by himself a few minutes ago. Now, he's sitting in the chair in the den with us, talking a little. He genuinely seems relieved to not be hurting so much, which of course delights me!

At home, finally feeling like interacting with us.

Pray that he continues to feel good, and that his rest tonight will provide recovery so that he can have a good day tomorrow.

We are blessed!

Riding in the car, on the way to the hospital.

Gavin Pre-op, enjoying his words and letters on the drawing board.

Thank you for all the prayers.

Gavin was out of surgery yesterday at approximately 2:30pm. Dr. Deeney spoke with us, indicating that everything went well during the operation. He was able to expand 10mm on each side as planned. Gavin looked good, but was of course feeling a bit groggy. He slept for the majority of the evening, needing pain medication and now wanting to be touched much.

By 9:00pm, he was perking up a bit. Mike and I were able to have some quality time with him. He was very interested in a nature program on TV that just played music and pictures of flowers and trees (a hospital-sponsored soothing channel). He kept saying "pretty music", "pretty flowers", "three flowers", "red flower", etc. He was doing a bit of disjointed babbling last night, and although he made little sense, it was very cute. He was able to self-feed 5+ cherrios and really enjoyed drinking water. He did not want to sit up, as this was still painful for him. I was able to snap one photo (see below), where he was making his best effort to say "cheese".

Overall, he seemed to be recovering well. He did have a "plug" which gave us a little scare, but it was suctioned out quickly and his breathing returned to normal. This may be expected since he was immobile for the majority of the day, and he avoids coughing because of the pain, both of which cause secretions to settle in his chest/trachea and become less moist.

I am planning to see him within the hour and will update this site later today with progress.
Continue to pray that his recovery will go well, that he will be discharged this morning, and that he will feel comfortable enough to resume some play activities.

Recent Pics of Gavin

Gavin on the Fall Festival - Trax Farm - hayride.

Trax Farm: Train ride that he absolutely loved. He had to ride alone!!

Pittsburgh Children's Museum: Water Table. He got soaked despite the rain gear.

Pittsburgh Childrens Museum

With Mom & Dad at (Pittsburgh) Mt. Washington overlook.

We're ready for surgery! ...well, physically, Gavin has been cleared. I must say that I never feel completely ready, however, I know that this will be good for him.

We spent the morning at the hospital doing pre-op: x-rays, bloodwork, meeting with the orthopedic surgeon, Dr. Deeney. This was the best he's ever performed for an x-ray. I have him trained to say "cheese" for "taking his picture". He actually seemed to enjoy that part. For the drawing of blood, however, I've never seen him go so immediately from happy to screaming. Wow, he's getting strong. Fortunately, the nurse was good and the first stick drew the needed blood.

A comparison of his x-ray, relative to changes since April 2007 (his first expansion surgery), indicates a persistant curvature of his spine, at 18%, a change from 6% four surgeries ago. By itself, 18% is not a concern, as this degree would not be treated. Dr. Deeney did note the condition as something to be aware of as we monitor the impact of the rods. The rod placement is still good, as the rings (attached at top and bottom on both sides) have not begun to slip or wear into the ribs. This risk is always closely monitored, as we expect that at some point they will begin to wear through, requiring that the rods be re-attached to another rib. Dr. Deeney expects to expand each rod 1 - 2 "notches", as there are 6 remaining on each side. (Each "notch" is 5mm, as I recall.)

Gavin is having a good day. Following the hospital visit, we went to ChicFilA, or "Siffaway" as Gavin calls it, to allow him play time. Tonight, we are planning to take him to the Mall play area, or "Aaweeuh", so he can have a little more fun. I really don't think he comprehends going into the hospital or having surgery, as I've explained to him. I feel so guilty this time, however, because he has become much more sensitive to dr. office visits, ie. the immediate reaction to a nurse sitting down an searching for a good place to get blood from him! Anyway, maybe the extra play time today will soothe my conscience.

I plan to post during, or at least post, surgery. We expect surgery to begin around 8:30am and last approximately 4 hours. Please pray that the surgery goes well, and that he feels as little pain possible.

October 2008 Surgery

Gavin is scheduled for surgery this week, 9/16/08.

This surgery should include an expansion of the VEPTR "ribs". (See www.gavinherman.com for further explanation of Gavin's medical history.) This expansion will be the 4th received following the two initial surgeries to place the VEPTR device.

The greatest change in this round of surgery is that the procedure will be done in our hometown! No, he's not having the surgery done in Alabama - we've moved - to Pittsburgh.
The geographical shift will certainly be a blessing, in that the travel will be minimal and the proximity to our new home will make the ordeal of surgery much less of a burden.

We go tomorrow to start bloodwork, x-rays, and consult with the surgeon. We are praying that this goes well and that the surgery proceeds as planned on Thursday.

Please check this blog for future updates.
The www.gavinherman.com site has not been updated recently, due to technical difficulties! It is still accessible to view our history with Jeune Syndrome, however, I (Rebekah) will be using this blog to provide Gavin updates until the website is functional again.
Stay tuned for more updates and pictures!