Answers

It has taken over a year, but we might finally have an answer to the delays. No, it isn't just because it was a preemie, but it is "side effect" if you would like to say that.

Yesterday Luke, my mom, and I loaded up and headed to Riley to see the Developmental Peds department. We hadn't seen them since July when the decision to try inpatient feeding therapy was made. At that point they never really gave us many answers other than he needed more nutrition to catch up. So we did what they recommended. Since then we have had our struggles, but we are slowly seeing improvements. However, Luke still does not sit. We have increased therapy and are watching Luke become stronger. For example right now I am watching him roll around the floor just trying to reach things that he has thrown around.

Don't get me wrong, I am PROUD of him and all that he has accomplished. I just really want some answers why we aren't progressing like we had hoped. I was told over and over that he should catch up by the time he is 2...NEWS FLASH! Isn't gonna happen. I know that, and others are finally realizing that too at this point. I'm just more upset that I don't know why.

Well the NP we saw yesterday was happy with Luke's weight gain...wasn't expecting that. Luke is on the chart for height and on the height/weight chart for his adjusted age. He isn't on there by much, but he is on the graph instead of below it. She asked me my concerns, I had three.
     1. weight gain
     2. nutrition and diet
     3. developmental delays

In no particular order. I had heard before that the more nutrition he takes the more he will catch up. The problem is this, his diet changes each day. We fight the vomit, we fight the schedule, we fight life in general with Luke. I was told to work hard at getting in Luke's 5 feeds a day at 6 ounces. Even if Luke is sleeping, we need to feed him. We can either wake him or feed him in bed. I am now going to try and feed Luke earlier so we have a better chance to get his feeds in. I never thought I would say the great sleeping Luke does would hurt him in the long run. We also need to watch our schedule to make sure we are able to feed him on his schedule. Of course this happens when school is just starting and we're still trying to get ourselves in a routine. Also, they would like us back on Duocal. This is the added calories we were on almost a year ago to help a little. So no feed is simple. We have some with Duocal, some with Miralax, some with other meds. Not to mention the occasional inhaler. A complicated life, just got a little more stressed. The dietician is also going to call me this coming week to hash out some details.

Now we get to the big question...developmental delays. Like I said before, we need more nutrition for his growth. It all stems back to an ultrasound from the age of 1 week. At this time we were more worried and stressed about brain bleeds and we celebrated when there was minimal or none. I don't believe we were ever told about the minimal amount of white matter on the right side of Luke's brain. They are saying that his brain is delayed because it is rewiring itself. When he was born so small and so early his brain wasn't ready like the rest of his body. We are playing catch up more than most because of this smaller amount of matter. From what they told us, the greatest help to Luke with rewiring is therapy. To work with him all the time. Along with the high nutritional valued food, he should catch up. They of course can not give me an age when things will get there. They are hopeful that Luke will be sitting within the next 6 months. He is getting so close, he just needs to go over that threshold.

In the back on my head I always wondered about cerebral palsy. He has less muscle tone and is spastic at times. It comes and goes throughout the day. They want to see Luke back in 4 months to see if we have progression. If he is still not sitting and were in the same place they would like to do an MRI to make sure we haven't missed anything. Like I said before this is the first time I've heard about the small amount of brain matter. After speaking to Heather, Lily's mom, she went looking online just to see what she could find today. I give her a huge amount of gratitude. She found something that looks like Luke to a T from what we can see.  Periventricular Leukomalacia is what we believe to be Luke's diagnosis. Here is a link This is what the developmentalist was speaking of. The link sums Luke up correctly. The brain dies in areas around the ventricles. This happens predominately in premature infants, especially those with severe infections...ding ding ding. Infants with PVL can face major nervous system problems, especially in movement in the first year and the second year. The only treatment: therapy.

I heard the big words from the doctors, but all the answers come from Heather's searching. I can finally say that there is a reason to the madness and it isn't something were doing wrong. This is our baby, and we need to work with him. I guess in the back of my head I always thought I was the reason he wasn't sitting and I was the reason he was so behind. Now I know that there is a rhyme or reason to all of this. I feel relieve, and hope that we can overcome the obstacles. So not all great news, but I'll take it.

Now just to add some cuteness to your day:

Little Elvis

Looking real excited for his January Synagis vaccine