Saturday, December 15, 2012

A Christmas Miracle

Last week was a little rough for us.  Gavin isn't gaining weight as the doctors would like, so we are focusing on pushing calories and more feedings this week, in an effort to put some baby fat on him.  If this doesn't work, then the next step will be to put him back on the NG tube, and if that doesn't work, then we're back to talking about a surgical feeding tube.  We are also in semi-isolation now as we await for a shot that Gavin needs for his heart to prevent him from getting sick.  It really does feel like one step forward and two steps back.

But I started this blog after receiving much encouragement and advice from other parents who have kids with DS.  They told me that it really helps when times get tough or frustrating, to look back on your journey and realize how far your child and your family have truly come. 

It is easy to get caught up in the obstacles, and forget how far we HAVE already come.  Here are some pictures (finally!)for those of you who haven't been following through facebook.  Thank you all again for your many prayers, and for your part in giving us our Christmas miracle.


Wednesday, December 12, 2012

Healing Times

Our little warrior has been home for two and a half weeks now.  We were discharged the Monday after Thanksgiving and it has been a whirlwind since then!  Gavin did come home on a feeding tube, because he had still never eaten by mouth by the time we were discharged.  But feeding was the only thing keeping us there, so I was trained on how to put his feeding tube in, how to run the pump and give him all of his medications.  When the doctors first started discussing the possibility of having me learn how to put his feeding tube in, I thought to myself that there was no way I would be able to do that.  I have thought that a lot over the past few months, but when the time comes you end up doing what you have to do.  I've put a feeding tube in so many times now I feel like a pro.  I would still rather anyone else do it, but it was left up to me to ensure that Gavin was getting the nutrition he required so we made it work.

About a week after I brought Gavin home, he started taking a bottle.  Finally!  I've had to put the feeding tube back in at times, because he either won't wake up to eat or some days it just seems like taking the bottle is too exhausting for him.  Just the other day, I had to put one back in and Gavin didn't eat by mouth for over 24 hours.  Everything seems like such a big, overwhelming deal with him, because of all that he has been through.  If he sleeps for a long period of time, I'm constantly checking to make sure he's breathing.  If he doesn't seem interested in eating, I start worrying about the calories he may miss and how much he needs to grow and put weight on.  But Chris is always there, even from afar, to calm me down.  He reminds me what all Gavin has gone through and that some days maybe he's just tired and can't do it, so I need to do it for him. 

We've had two cardiologist appointments now and both have said that Gavin looks good.  He's holding his oxygen levels around 97 and 98 which is a huge improvement from where he was prior to surgery.  He will still need another surgery in a few years, because his pulmonary valve is bad, but for now he is recovering well.  Next up we meet with audiology, because Gavin failed his hearing test in his right ear.  It may be due to fluid in the ear or it may be a hearing loss.  We will also meet with an ENT at this time, since it seems like Gavin may have a lazy trachea.  It isn't causing any problems so far, but we want to keep an eye on it.

We also have to meet with an endocrinologist, because Gavin has abnormal thyroid levels.  That is fairly normal in kids with DS.  We have met with our community early intervention program, and our evaluations and early intervention therapies should begin in January.  There was a six month waiting list, but due to the severity of Gavin's problems and his age, we jumped right to the number one slot.  It felt so awesome to finally catch a break!  And our case worker is one of the sweetest people I have ever met.  Definitely a blessing!

Lorelai is doing great with Gavin.  She loves giving him kisses and making sure he's covered up and warm.  I won't say my days are easy, but getting hugs and kisses from Lorelai, hearing her laugh, seeing her love for Gavin and being able to finally hold my son in my home sure does make things bearable.  We are fortunate to Skype with Chris on a regular basis.  Lorelai loves talking to him on the computer.  Being apart is definitely hard, and unfair at times, but we are lucky to have a strong relationship and an amazing family dynamic that will most certainly get us through this next year. 

Plus, we have the most amazing Christmas miracle so it's pretty hard to stay down too long.  I still look at Gavin in awe and amazement at the things he has survived and the life that he breathes every single day.  We have a long road yet to travel, but with Chris, Lorelai and Gavin, I know that the journey will be a beautiful one.