Tuesday, July 29, 2014

Heading back to work...

Family and friends,

It has been a solid six weeks since I have even thought about blogging. Sorry to all of you who look at this page regularly, hoping for an update. Even though I have been home I just haven't been into it and so I haven't blogged. I have just been spending time with Pierce, enjoying the last month and a half of my paternity leave and kicking back. Although, let me tell you...I am looking forward to going back to work. Crazy as it may seem, I think the adult interaction in a professional setting is what is really appealing to me. Even though I can get adult interaction with Pierce around it just isn't the same. That and taking care of a kid full time is job in and of itself. It is not property management, but different. It is fulfilling, but different. It is rewarding, but different. Okay...enough about me. I realize that you are on this blog to hear about Pierce so let me get to it.............drum roll please.........

Pierce is doing great!

The end. Take care. I will talk to you all in another six weeks or so.

Haha, just kidding.

Pierce really is doing great. He is growing and thriving. As of yesterday he is 16 lbs, 7 oz and is 25 inches long. He has not grown a cm in the last month and because of that his pediatrician cut back a bit on his food. This is good because since we have complete control over his caloric intake, we can be sure that he does not become a fatty (the pediatricians word, not mine - even though this sounds mean, it really isn't and Pierce's pediatrician is fantastic) and we can make sure that his food increases when he grows. He has greater head control and can almost hold it up on his own, albeit for short periods of time, but he is getting there. He plays with an old Fisher Price spinning pyramid, which he loves. The cause and effect really work for him. He also loves this ball that Nicole got for him. He will put his arm in it and bat all sorts of stuff in his crib. It is hilarious.

We also found out (through an MRI) that he is a good candidate for cochlear implants. The ENT doctor said that the anatomy is intact and that he is confident that Pierce will have usable hearing (not just ambient noise recognition) which is fantastic news. I was on the fence about having him go through another surgery if all that he would hear would be ambient noise. This info is great though. The plan is to have that surgery at one year of age. Now, before he can get one of them implanted at one year of age, he has to have tubes put in his ears to drain the fluid so that they can be all dried out an perfect before they stick a wire in through behind his ear and in his cochlea. We don't need any more infections after all.

When they go to place the tubes, the plan is to have his soft cleft palate repaired and remove the tongue-lip adhesion. This is all great news. Since he has the trach (which is a secure airway) we don't need his tongue adhered there any more. This way he will get additional movement from his tongue and hopefully this will help him swallow food. We have been trying food in his mouth and he has some swallows, but he aspirates a decent amount of the food and I am caught for the rest of the day suctioning out sweet potatoes or peaches or whatever out of his trach. It sucks. Hopefully this will help.  You try it....take the tip of your tongue, press it against the inside of your bottom lip and then without removing it, attempt to swallow...not so easy is it? Imagine how it would be for an infant who is just learning how to swallow and has muscle weakness in his upper body.

And yes, he has seemed to have found his swallow...and his gag reflex. Both awesome!  Yay Pierce!

So the biggest thing that we found out, happened after his first optometry appointment. Nicole always had a suspicion that he could not move his eyes side to side (they actually go in a big V pattern...crossed eyes when looking down and the opposite when looking up but normal when looking straight ahead). This was confirmed by the optometrist. This information gave us a new underlying diagnosis. Pierce has Moebius Syndrome. It is likely that he does not even have Pierre Robin Sequence as all of those symptoms are common in Moebius Syndrome.

To find out more about Moebius Syndrome, please visit http://www.moebiussyndrome.com. This is the website to the Moebius Syndrome Foundation website. They are the foremost experts on this syndrome. Or you can keep reading and I will give you a quick rundown.

Moebius Syndrome is a rare neurological disorder which effects the 6th and 7th cranial nerves primarily and sometimes others. The cause is unknown, be it environmental, genetic, random or a combination; however, researchers believe that it happens between 4-6 weeks gestation...long before a lot of people know that they are pregnant. In many people the 6th and 7th cranial nerves are paralyzed or completely missing. In Pierce's case they are missing. The most recent statistic is that Moebius effects 1 in 1,000,000 people. Often people can go their entire lives without ever meeting someone who has Moebius. The most obvious in folks with Moebius is that they cannot move their face. Their faces are basically frozen. Folks with Moebius can also not move their eyes laterally. Those are the two main parts of Moebius. Other symptoms may include:
  • Lack of facial expression; inability to smile
  • Feeding, swallowing and choking problems
  • Keeping head back to swallow
  • Eye sensitivity due to inability to squint
  • Motor delays due to upper body weakness
  • Absence of lateral eye movement
  • Absence of blinking
  • Strabismus (crossed eyes)
  • Drooling
  • High palate
  • Short or deformed tongue
  • Limited movement of tongue
  • Submucous cleft palate
  • Dental problems
  • Hearing impairment
  • Articulation / speech disorders
  • Minor mid-line anomalies
  • Club feet
  • Hand/feet deformities
With that being said, the Moebius Syndrome Foundation has a conference every two years. 2014 was the 11th conference and it was held here in the DC metro area. We went and it was great. We learned a lot and met/saw about 375 others who have this condition from 4 month old babies to 60+ year old adults. It was amazing to see so many people with the same condition in one place because it is very possible that we may not have ever seen anyone else, ever. We plan to go every two years. It is a great place for Pierce to meet people and play with other kids that have this syndrome. Now, although it may take longer for kids with Moebius to hold up their head, crawl, walk, talk, etc., they usually catch up. That is a good thing. Before we were uncertain as to whether or not he would be able to do many of these items with his neurological issues, but it seems to us that likely he will be able to do everything. By the way...although these folks may look different, cognitive ability is not affected.

Overall, this is positive news but upsetting at the same time. Even though it could be worse, it isn't and we are thankful that it is what it is.

Pierce was also recently accepted into the Kendall Demonstration School which is part of Gallaudet University. It is a school for the deaf and hard of hearing and he starts in September. It will be two days a week for about four hours a day. It will be awesome for him.

To end on a high note, my mom and grandma came out to visit. We had a GREAT time. Four generations in one household under one roof. It was fantastic. We talked and played with Pierce and had a grand old time.

That's all for right now. Now enjoy some pictures. :)