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. :)

Wednesday, June 18, 2014

Father's day? Birthday? Which is it?

This past Sunday the 15th was my first father's day. It was also my birthday so it was pretty special. Pierce and Nicole put together a great day. First there was a breakfast egg sandwich and presents. From there, we loaded up and took off to one of the local driving ranges which had miniature golf. We had a blast. It was hot, but not humid thank goodness. After that, we hit some balls in the batting cages. I tried curve and fast balls but didn't hit any. Sad really. But the slow pitch softball I was able to hit some of them. After that, it was off to Chinese food with some folks from the neighborhood. This Chinese food that was recommended to us was great....a little ghetto being attached to a Days Inn, but nonetheless great food. From there, back to the house where I invited some of the local neighborhood dads to the house for bourbon and cigars. Then to bed. What a great day. Check out some of the pictures.

Sunday, June 1, 2014

What a weekend

So, this weekend was one busy weekend. I decided that painting the fence would be a good idea now before it gets too hot. It had been beautiful and perfect painting weather, so I got one coat on the fence and it looks rather good, if I don't say so myself. Below is a before and after picture.

Nicole decided to break out the kid carrier. We found out a way to attach his pulse ox to the back of the carpet so that she could walk around and so while carrying him she watered the new trees that she planted last weekend. She planted a golden weeping willow and a Carolina silver bell tree. They are great additions to our yard! See below for Pierce hitching a ride on Nicole!

Sunday, May 18, 2014

Sunday chillin'

Pierce and mommy hanging out on a Sunday afternoon.

And kicking it with daddy.

Thursday, May 15, 2014

Where do fingers go? In a mouth of course!

Look! He is putting his fingers in his mouth. Nicole thinks that he might be teething. This is really the first time that I have seen him definitively put his fingers in his mouth and kept them there for any extended period of time. How cool!

Sunday, March 23, 2014

Pierce - Age: 3 3/4 months

Yesterday was a good day. We took him off any supplemental oxygen yesterday and he did great. I got home from work around 1130am and when I got here, he had Ben doing so well on 23% that I thought I would try taking him off altogether and see how he did. By the way, room air is 21% oxygen so it wasn't a big stretch. He was off till he was put in his crib for the night which was around 11pm. Overall, a great day.

Thanks to Carl and Dan for coming over and having dinner and hanging out. It was great!

Wednesday, March 19, 2014

Pierce - Age: 3.5 months

So, sorry for the delay in posting. Things have been hectic and I just have not had the time to sit down and write. I will try to be better in the future, but unfortunately I can't promise anything.

Pierce has had a very eventful couple of weeks. The last pediatrician appointment, he was 12  pounds eight ounces. Another pound heavier than he was just two weeks ago.

Last week he went in for a three day EEG because we just didn't feel something was right and thought that he was indeed having seizures even though initially they said he wasn't. The three days were intended to capture any major events. He went in last Tuesday and was to be discharged on Friday morning. Pierce knew where he was and was VERY unhappy. Can't blame the guy really. After only about 12 hours worth of the EEG, they determined that he was having seizures and we started him on a drug called Keppra to help control them.

He was then released the next day. Yay.

Since then they started him on another anti seizure medication so that they could ultimately stop the Keppra, but the first few days we realized that it seemed not to agree him because he started scratching up face. So we have stopped it, per the doctor, and will revisit at his next neurologist appointment.

Today we just had another pediatrician appointment. He is a shrimp (10th percentile) and his weight is right in line with his height. She said it looked like we have been taking great care of him and he is certainly moving around more, is stronger and has more eye movement. This is all great news! BTW, he is 12lbs 8oz.

Enjoy some of the pictures below.

Sunday, February 23, 2014

Pierce - Age: 11 weeks

Pictures....and some thoughts. 

It's its 730am on Sunday morning the 23rd. Pierce has been home for just over two weeks now. As I sit here watching him, so Nicole can get some much needed sleep, I am reminded the little things in life that we take for granted...breathing, swallowing, eating. 

It never occurred to me that I would be the parent of a disabled/handicapped child. But you know what I have realized...you figure it out. Children don't come with owners manuals. Well babies or otherwise. Modern medicine is amazing. 

I am so very thankful for all the support I have received from friends and family. It has been so wonderful and thoughtful.  All the nice emails, gifts, food, etc...It has been overwhelmingly nice. 

I am also so grateful for my colleagues and the company that I work for. Everyone has been understanding and interested in how Pierce is doing. It is so wonderful to have a work family who is that supportive. The insurance that my company provides is top notch and I am so grateful that it is available to Pierce. Without my insurance, Nicole's insurance and Obamacare, we would likely be bankrupt. 

A thank you to the wonderful people at Children's National Medical Center. They were fantastic and have given Nicole and me the skills to take care of our little man. They were great, caring, thoughtful and gave him such good care. 

Thank you to all the folks in Hyattsville. Thank you for taking us in when we moved and being such great friends. You all have been fabulous. 

Pierce has such a great group of people loving and pulling for him and for that I am grateful. I was watching the Olympics last night and they had a piece on this young girl who is a Paralympic Olympian in swimming and was born with two missing lower legs. She was adopted from Russia and lives in Baltimore. She mentioned in the piece, as she was heading to see her biological mother and father, that being disabled hasn't stopped her from doing anything. She learned early on how  to walk with prosthetics and is an extremely happy and talented young woman.  Pierce is going be that way too. As Dan said, he is going to be a beast. 

Right now he is kicking and moving and having fun on his play mat. I am very proud of him. 

Thank you all for your love and support.

Thank you Pierce for being strong and reminding me of all the small wonderful things in life.

Sunday, February 16, 2014

Pierce - Age: 10 weeks

Snow! This snow came on Thursday. We got about a foot. We enjoyed looking at it and still have snow on Sunday although it is supposed to melt if next week with spring temperatures. Grandpa Kovite has come to visit for a week.

Those are photos of the machines in his room. Nicole has done a great job of decorating and placing the furniture so that the machines aren't too much the way. It still is a lot of stuff, but we got this!
Happy Sunday everyone. Enjoy the Olympics.

Friday, February 14, 2014

Pierce - Age: 10 weeks...I think

Man, oh man am I tired. Nicole is exhausted. This is tough. I thought that I was ready for the middle of the night feedings, etc. but I dont think that I was. Now, I have nothing to compare this to but regardless, this is tough. I think the most nerve wracking thing is having to trust a nurse to take care of your child while you are asleep. Someone that you dont know, someone who you dont trust, someone who is in your house when you are not awake. Its just weird. And irritating. And seems unnatural.

I am having a heck of a time putting together this blog post, so please bear with me.

Since we have brought him home, about 10 days, the nursing company couldnt cover two shifts. This is the most frustrating cause Nicole does have to sleep. The second most frustrating/scary part is that some of these nurses have not a darn clue what they are doing....sure, they all talk a good game, but when the time comes to play...they cant. It is so frustrating. I would guess that part of the reason why they cannot find a nurse for certain nights is because we keep firing them. I keep coming into the room (by either happenstance or from an alarm going off) and the nurse has done something wrong. The last time, the lady was pumping the ambubag as hard as she could. Now, this is scary cause he is a TINY baby. If I had not set the regulator on that bag to keep it so that it wouldnt go past a certain pressure....I think that it could have been bad. That is the sort of stuff that I am talking about. It is scary. Needless to say when I saw that, I snatched the bag right out of her hand and started doing it myself....and no, I dont plan on having her back.

Regardless of the problems with nursing care, Pierce has been doing well. He has had a couple of episodes which turn into dsats and bradys, but then other times he will have them and he will be fine. Last night, when we had no nurse, Nicole said that he slept though the night and had no incidents. I think that is great. Maybe he is really coming into his own and figuring it out.

Friday night, again, no incidents and slept through the night. Same with Saturday night. Overall it had been a good weekend. Oh, and yes, I started this post on Friday and am just finishing this post.

At this point, there is not much to report as far as things that are happening so I see this blog become more and more small comments with pictures attached. If something big happens it will be on here, but enjoy the pictures and know that we are doing well.

Saturday, February 8, 2014

Pierce - Age: Nine weeks

In talking with Nicole, she recommends that I start taking his age in weeks so going forward, that is what I will do.

Pierce is officially home! Yay! We are excited and terrified at the same time. Currently we have 24 hour nursing and are going to keep that through the weekend and then reevaluate. The problem is that my insurance will only pay for 80% of the nursing cost and it is not cheap. But of course, we need to keep Pierce safe so we will see how it goes. The 24 hour nursing is supposed to end after week one anyway until we get adjusted to how to care for him during the day. We will need nursing through the night as right now, I didn't wake up to his alarms....I need to work on that as well. It will come, I'm sure.

Anyhow, he has now been home for a full 36 hours. He seems to be doing great and we are learning to take care of him in our home. It is a little but different than the hospital but that is to be expected. We just rearranged his room last night to work better for us with all the equipment that we have in the room and to get a suitable line of vision for the nurses.

He had his first pediatrician appointment yesterday. I met Nicole and the nurse at the docs because I was at work. That was tough for sure. It was the first time out if the house and boy was that nerve wracking, for me not being there and for Nicole having to it, but all in all he was fine and everything went well. The doctor is nice, we like the practice and even called them this morning for a question that we had about his not pooping in over 12 hours which I guess is normal and fine. Nicole and I are both happy with the choice.

It is now a weekend and we are going to bring him downstairs on his nose (a little filtered piece that goes over the trach that he can breathe through without being hooked up to the humidifier. We are going to put him in his pack and play and see how he likes being downstairs with digs and the fam.

I think it will be a great day. Here are some pictures from leaving the NICU to getting home, to him being in his room.