April 20, 2008

Dissappointing Chicago trip

Well, our trip to RUSH didn't go as well as we would have liked. The first appointment on Thursday went fine - we met with a slew of doctors and asked all the questions we could think of. First, Dr. Polley, the cranial surgeon, came in and we liked him a lot. He agreed with Dr. Figueroa that Aiden looks like a more mild to moderate case. His recommendation for treatment includes watching Aiden's soft spot on his forehead and if it starts to get smaller rapidly, then that is when they would do the first cranial surgery to open the suture. If it stays wide open as it is now, then they recommend waiting for surgery until it seems to become a problem. This allows Aiden to get bigger, in turn making anesthesia less risky as well as making it less likely that he would need to have additional surgeries later.

The part we weren't too pleased with was the meeting with the plastic surgeon, Dr. Derman. We were asked to get there an hour earlier than our scheduled appointment time of 9 am so that he could see Aiden prior to his regular day of scheduled patients. So we arrived at 7:30 for our 8 am appt. but were not seen until 8:40 because, as the nurse told us, "Dr. Derman swims every morning". Now, he seems like a good enough doctor, and I'm sure he is, but he looked at the x-rays we brought from Kleinert and Kutz here in Louisville for a brief 30 seconds or so before announcing that Aiden has 4 fingers and a thumb on each hand, but that on one hand it looks like he only has 3 finger bones from the middle part up to the tip. He then launched into how they would do surgery to make him have 3 fingers instead of 4 and how they wouldn't sacrifice function for fingers (meaning they wouldn't try to make 4 if it wouldn't be functional). I had to stop him and ask him why multiple doctors have seen Aiden, and 2 different sets of xrays, and this was the first we heard of this discovery. He hemmed and hawed and relooked at the xrays (for another brief 30 seconds or so) and said that yes, maybe the bones were overlapped and he couldn't tell. I suggested getting another round of xrays before he made such a conclusion. He agreed. He also said that doing any surgery on Aiden's feet to separate the toes is typically considered "a hassle". I could tell Ricky wanted to launch into him right then and there, but we just finished our appt. without letting our emotions get the best of us. When the Dr. left the room, Ricky had his mind made up. I was trying to keep an open mind, but it didn't take me long to agree that Dr. Derman would not be operating on Aiden.

We were hoping that we were going to leave Chicago this trip with a good feeling and that we could decide that this was the right place for Aiden to be treated - from head to toe (literally!) However, now we are hoping that our trip to Dallas May 15 will atleast allow us to split his treatment between Dr. Polley (RUSH) for the cranial surgeries and Dr. Fearon (Dallas) for the hand and feet surgeries. If we are completely blown away by Dr. Fearon, then we will also consider doing all of his surgeries in Dallas.

On a lighter note, Aiden was a perfect little traveler during his first of many flights. He nursed during takeoff, slept, then nursed during landing. I'm sure that while in the terminal, we were those people with the baby that nobody wanted to get stuck next to, but he didn't make a peep! Of course the flight to Chicago is only 55 minutes - we'll have to see how he does on the much longer flight to Dallas!

Until next time!






April 11, 2008

Choosing a team

We are still in the process of choosing the team that will treat Aiden and perform all or most of his surgeries. As I mentioned before, I visited with Dr. Figueroa at RUSH Medical Center in Chicago a few weeks ago and Ricky and I will be heading back up there to meet with Dr. Polley and his entire team (7 or 8 different doctors) to discuss their treatment plan for Aiden in more detail. We leave Wednesday, April 16 for our appt. on Thursday the 17th. We hope to get all of our questions answered and are keeping our fingers crossed that they might be the team we choose as it would be very convenient with family right around the corner.

We are also going to The Craniofacial Center in Dallas, TX on May 15 to meet with Dr. Jeffrey Fearon. Like Dr. Polley, Dr. Fearon is a specialist in craniofacial anomolies and syndromes. They both have extensive experience with children with Apert Syndrome and are pioneers in some of the treatment options currently available (to read article about Dr. Polley and Dr. Figueroa, click here).

At home, we have begun weekly sessions for both physical therapy and developmental therapy. The physical therapist will work on getting Aiden to improve his range of motion in his shoulders (kids with Aperts often have issues with their joints and muscle movement particular in the shoulders). She will also work on his head control, rolling over, mirror play, batting at objects, and all of the other things babies his age are supposed to be doing. He is doing great - and meeting every milestone so far - it's more of a proactive thing to ensure he continues to do so. The developmental therapist will work on gross motor skills, cognitive abilities, etc.

Aiden is doing really well. He's almost 9 weeks old and is growing overnight! He is around 9 lbs. now!






April 03, 2008

More great news!

Hey everyone - Here is an update you on how things are going (with Aiden, with Ethan, with surviving life with 2 kids...). Mom was here through Easter and I was certainly sad to see her go, but considering she hadn't slept a night in her own bed since January 31, I'm sure she was ready to get home. We went up to NKY for Easter and had brunch at the Hilton. The next morning, my mom, me, Lauren, Ethan (1), Lilly (2), Avery (11 weeks) amd Aiden (7 weeks) all drove up IN ONE CAR to Chicago to visit family. The kids were actually very good - and if it wasn't for the 2 hour complete stand still on 65 N because of an accident that closed the highway, it would have been a suprisingly uneventful trip.

While in Chicago, I managed to get an appt. at RUSH University's Craniofacial Center to discuss possible treatment there for Aiden. After being kind of disappointed in the doctors we've met with locally, I was very pleased with the doctor there and Ricky and I will be going back for a meeting with the entire "team" of doctors that would treat Aiden.

We will also be heading to the Craniofacial Centre in Dallas, TX to meet with another "top" team of doctors. We are looking forward to getting all of Aiden's surgeries scheduled (or at least a timeline set) so we can just enjoy him as a baby, instead of hopping from appt. to appt.

We're continuing to get great news along the way - Opthamologist said his optic nerve is normal and looks great (some kids with Aperts have shortened optic nerves which cause vision problems) and we've begun Physical Therapy once a week and Development Therapy once a week. We are bound and determined to give him every opportunity to develop normally. He's doing great and gaining weight - 8 lbs. 5 oz. at the last appt.

As for Ethan, he's walking now! He went from toddling along furniture to almost a full fledged run in a matter of days. He has definitely warmed up to his brother even more and gets concerned when he hears him crying (he'll point and say "AWWWW"). And he's currently adding 6 teeth to the 4 he already had (but handling it very well).

Ricky and I are tired (obviously) and are counting down the days to when Aiden starts sleeping through the night. We also can't wait for the nice weather so we can get both boys outside. I'm officially a SAHM (stay at home mom) now as I take on my full-time job taking care of the boys. Today was my first full day home with them (no doctors appts, errands to run, etc.) and I must say, I think I'm going to actually miss getting out of the house 5 days a week!






April 01, 2008

I'm a big brother!

Hey everybody! Just thought I would let you all know how things are going...Did you know that I am a big brother now? I really love my little brother! I like to lay my head down close to him and pat him and say "AWWW". I would like to kiss and hug all over him, but mom says he's still too little and I might not be gentle enough.

Guess what? I'm walking now. It is soooo much better than crawling (and better for my knees!) although as fast as I try to go, mom and dad can still catch up to me. I'll have to work on that! Before they know it, I'll be able to outrun them!

Hmmm...what else can I say about myself? I know a lot of words, both in sign language and out loud. I can say MORE, PLEASE, MILK, THANK YOU, CRACKERS, EAT, NITE NITE, CUP, CAR, and of course MOMMA and DADA. I love to sing and dance (you should see my dance moves!) and my favorite songs are The Itsy Bitsy Spider, The ABCs, Old McDonald and Twinkle Twinkle Little Star.

I am an eating machine and I like to eat whatever it is mommy and daddy are eating (especially all of mom's toast in the morning). Mommy calls me here little monkey because I go crazy for bananas. I would eat one for every meal if I could - but mom and dad say it makes my diapers too stinky, so they only let me have one in the morning. I'm working on using a spoon and a fork - but I think I drive mom crazy with how messy I get. That's okay, because the more mess I make, the more baths I take and I LOVE BATHTIME!

Well - I've got to go for now. Chat with ya later! Love, Ethan






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