How is Matthew?

We are often asked: “How is Matthew doing?” Here is our answer today:

Matthew has been congested for the past 2 weeks. We aren’t all that surprised given he lives with two preschool aged petri-dishes. I took him to the pediatrician last week to check him out. I felt a little silly taking him, as it’s just congestion, but I was worried that it would be different since he’s unique. Dr. Bel let me know …it is just congestion. He’s going to get the typical childhood yuck. So, we are flushing his nose with saline mist, keeping him elevated, using the nasal aspirator, etc. Most of the time he doesn’t seem too bothered by the congestion, but sounds a bit like baby Darth Vader.

Other than that, Matthew is doing well. He’s become more proficient at eating. He takes about 2 ½ ounces in about 30 minutes, though he still leaks a bit out the side of his mouth onto a towel. This is a huge improvement in the past 6 weeks. Matthew’s sleep schedule is getting more normalized as well, for which we are very grateful. Most nights he does a 3 hour sleep stretch, eats and then does a 4 hour stretch. Overall, he’s not too fussy, and is best comforted by just being held. Thankfully, we do love holding our squishy baby!

Speaking of squishy, Matthew still has hypotonia (low muscle tone), which is typical for 4Q duplication. That makes him a bit squishier than other 6 week olds. His neurological system needs to continue to mature for the tone to improve. We have exercises recommended by OT to give him the opportunities to practice.

On the whole, Matthew is doing well right now. Although unique in his own right, he’s a pretty typical 6 week old.

We pray that Matthew meets his upcoming developmental milestones (either on time or even a bit delayed). We are not as concerned about the delays, as he was delayed in learning how to feed, but he is catching up. Completely missing milestones is our concern. Unfortunately we won’t know whether the milestone is delayed or missed until he hits it. I think we have come to terms with potential delays, I don’t think we are quite there yet if they are complete misses. But as we are trying to prepare ourselves for all the possibilities, I read a wonderful reminder on a blog of a family who have a little girl w/Angelman Syndrome. This is a small excerpt of the poem “The Child That Cannot Talk” from their blog (http://thelaughlinfamily-tx.blogspot.com/2010/01/child-who-can-not-talk.html)

I am the special child.

I am your teacher.

If you allow me, I will teach you what is really important in life.

I will give you and teach you unconditional love.

I gift you with my innocent trust, my dependency upon you.

I teach you about how precious this life is and about not taking things for granted.

I teach you about forgetting your own needs and desires and dreams.

I teach you giving.

Most of all I teach you hope and faith.

I am the special child.

So true!