Our New Normal

Wow!  What a year we have had!  One year ago, on September 9, I found out I was pregnant with Matthew.  It was a complete and total shock, and our lives were sent into an immediate tailspin that we are just now coming out of. We sold a house, bought a house, moved, learned all about Matthew, moved to Kansas City for two months, and came home to five very busy boys.  After a year of total chaos, we finally feel like we are settling into our new normal.

Matthew just turned four months old!  There have been a lot of changes over the last month.  One of the most exciting changes is weaning him from oxygen.  He has been off oxygen during the day for over three weeks now, and recently we started leaving it off at night.  He has done amazingly well with the weaning, and I am hoping we can be off of it for good in the next couple weeks.  Right now we still put it on him at night, but only turn it on if he needs it.  I use little bandaids to keep it on his face instead of the oxygen stickers, which allows his face to be sticker free during the day.  I still love seeing his naked face.   Our pediatrician said we won't be in any hurry to give the oxygen up for good.  If Matthew gets a cold or respiratory infection he will probably need a little bit of extra O2 to help him fight it off.

Another major change is that Matthew moved into his own room and is sleeping in his crib.  The second night in his room he slept ALL night!  I thought we had it made.  Since then it has been a little rocky (to put it nicely).  He is having a hard time learning to put himself back to sleep if he wakes up, and he definitely experiencing a sleep regression which is very common around four months old.  Every night is trial and error and we never know if it will be a good night or a bad night.  It is like handling a stick of dynamite whenever we get him to sleep!  I think he is getting back at us for the sleepless nights we missed out on as a newborn because he was in the hospital. Someday, hopefully soon, he will be a good sleeper.  Did you know that kiddos with Down syndrome are usually better sleepers than typically developing kiddos?  I am hoping to experience that perk pretty soon!

When I was taking Matthew's three month pictures, before my last blog post, I tried getting pictures of him on his belly.  I laid him on the Boppy and ended up getting one good picture, but it was definitely not very successful.  Now, just a month later, he is holding his head up SO high and can roll from tummy to back and back to tummy!  My challenge in getting the picture this month was keeping him on his tummy long enough for me to get back to my camera!  Mobility, here we come!!  Matthew, so far, is achieving gross motor milestones within the average range of a typically developing child, which is not expected for babies with Down syndrome.  We are very grateful that he seems to be such a strong little guy.

A.J. turned two at the end of August, which means we survived two under two for the second time in our lives.  We hope these two boys will be the best of friends and love having each other by their side for the rest of their lives.  Watching them together makes the craziness worth it.  We joke that we were done having kids, but God decided that A.J. needed a buddy, so he gave us Matthew.

Matthew had his checkup with Dr. Daley this week, and he said he looks and sounds great!  We will go back to Kansas City for a checkup on October 25, and we don't see Dr. Daley for two months!  I can't even explain how wonderful it feels to have over a month without any doctors appointments!  I am going to soak it up.  There are a ton of things we will need to have checked out around six months old, so the following month or two will be busy.

J.P. has used the phrase "coming up for air" to explain where we are in our life.  Our lives have been anything but normal over the last year, but we are finally coming out of it.  When discussing whether we should go to a school event or not J.P. responded by saying "Yes we should go, that's what normal people do.  They go to school events."  We missed out on so many things over the last year.  We weren't able to enjoy holidays or other special occasions as much because of the stress we were under.  We put our lives on hold to give Matthew the best shot at a great life.  We would do it all over again, but I am sure glad we are on this side of it now.  We have come such a long way from those early days in the NICU, and we do not take that for granted.  Every "normal" day at home, taking care of our five boys, feels like a gift.  We are tired, exhausted and still a bit overwhelmed at times, but life is good.  Now we just need to get a good night's sleep!

I have been taking more pictures of him now that he doesn't have anything on his face!  Here are a few of my recent favorites:

PS- Did you notice the new blog header? Mighty Matthew is working those muscles!