One day at a time...

Isn't that how it is for all of us...we just have to take things a day, hour, even moment at a time sometimes.

Maddox is definitely making progress. As of today, he weighs 9 pounds! As far as length goes, I don't trust any of the measurements that have been taken. He either shrinks or grows some ridiculous amount compared to the last measurement. I think he is somewhere between 20 and 21 inches, but really, what does it matter. Maddox will be starting growth hormones in the next year or two anyway, and hopefully by then we'll be able to get more accurate measurements.

Today we spent 5 hours at doctors' appointments. He saw the GI doctor, who was pleased overall, went up on his prilosec(reflux med) and increased his hourly feed volume. There is still blood in his stool, but we are hopeful that the longer he is on the Elecare(hypoallergenic formula) the better things will get. Today he took about 11 mls of milk by mouth in about 3 minutes, no problem. To give you some perspective 1 ounce is 30 mls. Recently he has been taking more like 3-5 mls at a time orally, which is next to nothing. The bottle he uses is about 2 inches tall and measures each ml. We have a goal to have him drinking 20 mls per oral feeding in the next 6 months. I am sure we'll make that goal if he builds on what he did today, but you know how it is...2 steps forward, 1 step back. We'll just take it a day at a time.

Maddox also saw the pulmonary doctor who, last week, prescribed a nebulizer and two medications, Albuterol and a steroid, to be used twice a day, for who knows how long. Maddox got a chest x-ray today and his lungs don't really look different from almost two weeks ago. We will see in a month if the daily breathing treatments make any sort of difference. Maddox also got his monthly synagis shot to help prevent RSV. This is one expensive shot, costing more than $1000 per dose. Hopefully our insurance will cover one more dose for March.

We have added more medication this month, which is discouraging, but hopefully temporary. We went up on three different meds and added two completely new ones to the mix. With each medication there are risks of side affects and drugs interacting with one another, but so far Maddox has been tolerating all of them fairly well, except for the iron. We now give the iron to him in small increments so as to not overwhelm his sensitive little tummy.

I have been letting Maddox do an adapted tummy time, and I really think he has more neck/core strength and head control in just the past week. Sometimes I get hung up on the fact that he is 3 1/2 months old and fairly far behind other kids his age. It is hard to accept sometimes that he is on his own schedule and is going to do and learn things in his own time and own way. I know that is the case with all of us, but just more so with individuals who have some significant issues. I don't think I have fully accepted the fact that I have a special needs child and that the long term affects of some of the things he has experienced are out of my control and cannot even be fully known at this point.

As a teenager I honestly always felt that I would have a child with disabilities. I felt like my first son, who was speech delayed, might be able to fit the bill. In fact when I found out that my first child was developmentally delayed I cried and felt like he would never be normal. He is now in kindergarten, doing well, loved by his teacher, enjoying school, and very much a normal and darling little 6 year old boy. I have to believe that Maddox will be the same, for all intents and purposes. If I dwell on the thought that he's not going to be able to progress and his life has no possibility at normality, then I might just stop trying. Some days it is hard to see the point in some of the things we work on. In the back of my head I'm saying, "he's only going to go back to square one when he has surgery again. is this treatment really going to do anything to help? is it worth spending so much time on this(oral feeds, different therapies) when I have three other kids and a house full of laundry who need my attention too? Poor Maddox. Of course he is worth it. Just some days it is hard to look into the future with a positive attitude.

The older kids have been great overall and just love their little brother. Tracen makes Mad grin and is constantly asking if he can give him kisses or touch his foot or head. So sweet. Maddox just watches the craziness unfold as the other kids chase each other around the room, sings loud songs, and just run wild. Maddox likes it, most of the time, and can even sleep through it.

So, one more week down and we are making it! I am sure I will look back someday and be so grateful for the experience, and SO grateful that this part is over.