16 Months

I have been such a slacker when it comes to updating the blog. Life is busy, which is obviously not a situation unique to just our little family. Life is just busy, period.

But I will attempt to do better.

(Equine sleeping is all the rage around here!!)

Maddox is 16 months as of the 21st of February. He is a speed crawler, proficient cruiser, and extremely curious little man. He is super cuddly, very squirmy, and gives the best hugs complete with back patting. Love him.

If I had to guess, I would say that Maddox is about two months away from walking, and when I say walking I mean toddling around precariously. With that being said, he is doing very well and is making good progress with his gross motor skills. He is very strong and very motivated. It has been a blessing for him to have older siblings to watch and try to keep up with. One of the problems with him being mobile and wanting to move quickly is his feeding pump. He spends about seven hours a day hooked up to the pump. The tubing is several feet long, but he isn't a fan of staying within a certain radius of the backpack that holds his pump and bag of food. He tries dragging the bag behind him as he crawls, but it tends to create a leaky mess and sore tummy. The older kids are great about helping Jeff and I move the bag around the house as Mad crawls and moves. Once he is walking I think we will try to just put the backpack on him and let him carry it around with him. It might be a bit heavy though, which probably won't help with his initial unsteadiness, but as he gets the hang of it I would imagine that wearing it would free him to go where he wants to go.

(not uncommon mess at our house)

I wish I could say that Maddox would be off the pump soon and eating by mouth, but that is simply not the case. We have seen little progress in the feeding department, but are trying to not be discouraged or frustrated. It is what it is. For the past few months Maddox has plateaued with his growth. His dietitian had us go up considerably on his feeds, but it is definitely possible that his lack of growth is due to his chromosomal disorder(turner's mosaic), or his thyroid, or his heart. At his last cardiology appointment in January we saw that his heart was starting to show a little more wear and tear and start down the anticipated path leading to more surgery. Apparently it is possible for one's heart function to look okay on an echo and still show metabolic changes that are caused by heart failure. So, we aren't completely sure why he isn't growing at a faster rate, but I assume the next few months will be pretty telling. We finally switched to a new GI doctor after spending the past year going to.....a less than helpful one. We have some tests coming up to help us figure out Maddox's gagging, retching, vomiting, and determine if he needs more surgery to help. It is possible that we will be referred to and ENT as well in the near future. You can never have too many specialists, right? An ENT would put us at SEVEN specialist that we see on a regular basis. That of course doesn't include his pediatrician, PT, OT or dietitian. Too many doctors!!

On a positive note, Mad is letting us brush his teeth with an electric toothbrush!! His OT brushes his skin with a medical brush. She also uses a little massager the size of a pen with different heads on it and massages his body and inside his mouth. All these things help with his sensory issues and will help with feeding. He know what food is and where it is supposed to go but he seems pretty nervous about putting it in his mouth. He says, "Aahhhh" and shoves crackers and the like in our mouths, but really isn't interested in doing more than licking or touching his lips to most things.

He has said or attempted to say a few words and is understanding directions more and more. His is such a goof. He can be really shy, but can also be such a ham. We have started letting him go on the trampoline and he LOVES it! This kid has NO FEAR. When the older kids are outside jumping he stands at the window and squeals and waves and points a laughs. It is adorable.

Maddox wants to be where the action is.

His mom could handle maybe a little less action, but of course we couldn't let things get

too boring around here.