God Bless Charlie

Charlie was baptized at Holy Family Church with our friends and family present to join in the celebration on Saturday morning. Deacon Nick, who has supported us since we received our diagnosis and who baptized him the night he was born, performed the ceremony. It was a very special celebration for all of us.

Our good friend Ted is Charlie's Godfather and we are sure he will guide Charlie from this point on. We could not think of a better choice than Dee for his Godmother. She has been his (and our) guardian angel from the beginning and loves him so much! We are so blessed to have both Ted and Dee willing to fulfill these roles in our little boy's life!

We truly appreciate everyone who came and helped celebrate. You have all meant so much to us this past year and have supported us all in ways you can not possibly understand. We know how blessed Charlie is to have you in his life.

The heirloom bonnet did not last very long with Mr Grabby Hands, but it has been tucked away in a safe place for his future bride to carry down the aisle as a kerchief some day.

I am a happy holy baby!

So, the problem with multiple people taking pictures is that no one is ever looking at the same camera at once! :-)

Our big boy with his AMAZING Godparents!!

Ireland Rose

I am so saddened to report that another CDH battle has been lost. Chanda and Mikey had to make the decision to let little Ireland Rose choose her wings over feet yesterday. Chanda has been supporting us through our blog for months and it makes us so sad that things have turned out this way for them. Please pray for peace for these amazing parents and their son Tristan as they try to find meaning in all this.

http://lovingourirelandrose.blogspot.com/

Beach Days

We spent last week at the beach with Vince's parents and camping friends: the Sherwoods, Mitchells, and Cantellos. It has been a fairly mild summer so far around here, but of course the first time we are away from AC at the touch of a button summer hit full force! It was very warm and strangely still considering we were right on the lake. Charlie is not a fan of being hot, so we stayed in trying to catch as much of a breeze as possible from a battery operated fan! It was a good time though despite all that.

Camping at the beach of course is not without its drama when you are with a 6 month old. On Monday Charlie developed a rash on his chest and belly that we attributed to the heat. He did not seem overly bothered by it when he was kept cool. It stuck around all week, but was losing its redness as the weekend got closer. On Thursday he was particularly irritable after spending the morning with grandma and seemed a little warm to the touch. So we took his temperature and when it read 102 we attributed it to teething and gave him some tylenol. The fever lasted for about 24 hours with the tylenol and then seemed to subside.

We came home on Friday evening (after much drama involving Vince's dad and a trip to the ER due to kidney stones) and when we woke up Saturday morning Charlie's rash, which had been improving, had spread over his entire body. His arms, legs, back, and face were now covered and he was obviously uncomfortable. A call to the pediatrician's led us to putting hydrocortisone on and seeing if that helped.

It didn't and after a sleepless Saturday night, we called the pediatrician again and asked to be seen. At this point his arms and legs looked sunburned because they were so red and irritated. When the pediatrician (not Dr Dracker, but another from the practice on call) looked at him she ruled out chicken pox, measles, or anything viral. She said to us, and I quote, "I think we have a case of G.O.K. - God only knows." Now, I understand things happening for no apparent reason - I myself have sensitive skin and break out with no cause - but there are better ways to relay this information to a concerned parent. She said to wait it out and give him benadryl at night to help him sleep more comfortably.

Sunday night, two doses of benadryl, still no sleep, and a rash that continued to look worse than before prompted me to call the pediatrician's office again Monday morning and schedule an appointment to have Dr Dracker look at him. This was not to get a new diagnosis, as I was willing to accept that it is quite possible to not get an answer, but more to find out how we could make poor Charlie more comfortable. Our typically happy baby had been crying and refusing to do anything but be held for over two days now. Dr Dracker looked him over and decided he thought it was a staph infection and put him on antibiotics. He has been on the antibiotics for a day and a half now and you can hardly tell he even had a rash.

In light of all the chaos of life for the past week and a half, Charlie's feeding progress has suffered slightly. When he got the fever we stopped his cereal in order to focus on keeping him hydrated. We have not started back up yet because we were waiting out this rash situation. He is back to waking up around the clock again every 3-4 hours and he has been taking between 4 and 5 oz from the bottle rather than the 6+ we had finally worked up to. So we continue the dance and will work at getting back to where we were again. All in due time I guess!

He is amazing though! So strong and he is just itching to be mobile. Everyone seems to think that once he starts getting around on his own there will be no stopping him! No slow transitions for him! :-) We are having his official baptism ceremony at our church this weekend. He was baptized the night he was born, but this will be a nice celebration. We wanted to get it done before the summertime is over to make us feel better about the germ exposure from being at church and around so many people at once. Hopefully we will have some nice pictures to post from that next week!

Charlie chilling out, waiting for dinner time!

Nothing better than bouncing on the beach!

"All I need is a tropical drink and life will be fantastic!"

Cousin Emanuel -

This is a great way to keep a 3 year old out of trouble! :-)

Family picture on the beach

"Mom, why do you always smooch me like that?? Its embarrassing!"

"Hi Guys! Isn't this place great?!"

This is where Charlie and I hung out most of the week. He played and people watched and I read my book. A good time was had by all!

Sleepy Charlie!

"Man, this vacation stuff is exhausting!"

"Daddy just promised me a cheeseburger! Woo hoo!

***

There is nothing better than a Southwick sunset to convince you that all is right with the world.

***

Our poor baby passed out after being miserable all day long. :-(

developmental report card

Charlie had his 6 month checkup at the NICU developmental office yesterday and passed with flying colors! The developmental specialist, Diane, whom we worked with while in the hospital and Dr Bode both think he looks great and is progressing as a normal baby at this point.

He enjoyed all the new toys around him, showed off all he can do, and "talked" up a storm! The only thing Diane noted was that Charlie tends to step down with his toes initially rather than flat footed when he is stood up. She did not seem overly concerned though, so I guess it will just be something to keep an eye on.

His weight was up to 17 pounds 3 ounces. Dr Bode was happy with that and says she wants to just see a slow and steady gain from here. She said that his weight gain should taper off now that he is 6 months old. We were given the all clear and only have to return when we want to visit!

We were also given the spiel again on the necessity of keeping Charlie healthy as we are coming upon cold and flu season. Dr Bode has heard that this year's flu season is expected to be particularly rough especially with the resurgence of the swine flu once the kids all go back to school and the weather starts to change. If and when a vaccine is approved, we are going to give her a call and see whether or not she recommends it as something that is safe for Charlie to have. Regardless, we will have to be careful about going in crowds and will probably stick around home - not that we go out much with him now! :-) I guess there will be no grandma's house for Christmas this year!

Food Time!

The six month marker we met last week also meant that we were all clear for starting some "real" food. As I have mentioned before, we decided to give the Super Baby Diet a try and because it is based on whole grains, it is recommended that you wait until six months so that the digestive system is a little more mature. We had no real reason to start any earlier, so we waited it out!

Charlie is starting with the Super Porridge made of organic brown rice. Once he proves successful with that we will tweak it and add different grains in and start with some fruits and veggies too. I have been trying to keep an eye out for fresh locally grown fruits and veggies that I can freeze for now, so that we can use them to make food later on once he is ready. We went blueberry picking last week and have a little stock pile in our chest freezer in the basement now!

For now he is getting cereal twice a day. His first cereal went fairly well yesterday. It was a messy ordeal and he does not like finishing the entire portion, but as with everything, we will go at Charlie's pace!

First bite: "Hmm... What's this??"

"Uh, guys... why do you keep smearing this stuff on my face??"

"OK, I get it - - you put it in my mouth and I spit it out..."

Round 2: We got smart and took his outfit off before starting! :-)

Here we go again...

"Clean and dry! Chillin' in my crib!"

Prayers for Beal Family

Baby Jackson lost his fight with CDH yesterday afternoon and chose wings over feet. Please keep him and his family in your prayers and they struggle to make sense of everything around them right now.

An Amazing Six Months

Charlie is 6 months old today! It is so hard to believe. In the grand scheme of life, 6 months seems like nothing and yet the past 6 months have changed our lives so drastically. And to look back at where Charlie was 6 months ago versus today, it is mind boggling! When we were up at the hospital visiting Melissa, Walt, and Noah last week, Melissa and I were talking about what a huge difference 6 months makes at Charlie and Noah's stage, but in no time at all you will not even be able to tell that there is a difference between them. Life is amazing!

Charlie started sitting up by himself last week. He cannot pull himself into a sitting position yet, but if you sit him up, he is pretty steady! He's very strong! And yesterday, seemingly out of nowhere, his random screeching and screaming turn into more purposeful sounds - - dadadadada, yayayaya. Still just sounds, but definitely progressing towards something more! He is still chewing and slobbering like crazy, but no signs of any teeth yet.

Luckily, his reflux seems to be under control since restarting the reglan and his feedings are around 6 oz each again. Over the weekend, Charlie decided that sleeping through the night was a good idea and after we woke him to feed him before we went to bed at 11 or 12, he would sleep right through to 7 or 8 the next morning. The past couple of nights he has been waking up again for a bottle at around 4, so he is still calling the shots just as he has been since day 1! :-)

Serious Charlie

Smiley Charlie

Charlie and Chloe sharing some tummy time together

"Those are awfully big eyes you have Chloe. And and awfully big nose.

Can I grab them? Please?"

Sitting up all by himself!

I moved the "just in case" pillows to take the picture. Right after I got the picture, he looked up to see what I was doing and... CLUNK... toppled over and clunked his head...

There were some tears, but after a hug and getting his toy back, he was fine. And Chloe was completely unfazed by all the action, as you can see. :-)