Ok, so if I could have looked ahead and known what the first month of Grady’s life would look like before we was born, I would not have fretted so much. Looking back on all the books and jargon read, I feel blessed to have positive updates to give…. but really all that aside I am overwhelmed with the gift that is Grady.
Here are a few highlights from our first month home with our Grady:
Medically speaking… He latched on in the hospital and proved to be a vigorous eater taking in all the milk he can get… gaining over a pound within the first 30 days. While in the hospital we were able to meet with the Genetics Doctor who praised his strength and control. He got clearance from the Pediatric Cardiologist that his heart is perfect….A slightly bumpy road was paved by prayer when Grady passed his ABR hearing test. He had beat Jaundice in no time. Our biggest medical malfunction happens to be a little cradle cap and clogged tear ducts. I must say all of these updates come with a sigh of relief.
Developmentally speaking… I will admit, I focused on all the things they said Grady probably wouldn’t be able to do in those Down Syndrome books. Not too often do you read what they probably will be able to do… so to me Grady is already a champ. He is our champ. Not too sure where to start since we have yet to meet with our therapists for his Initial Evaluation (it happens this Thursday the 25th!) but as you can see from the picture above he lifts his head to see us all the time. He follows objects with his eyes and head. He kicks his little legs as if he is doing the running man on his back. Not to mention sleeping 8+ hours a night! I mean he is 1 month, he does what all 1 month old babies do with or without Down Syndrome, he eats, sleeps, poops and provides a bundle of love. I promise myself never to get too caught up in the can-nots just the can-do’s from here on out. So write this in your books. can-do!!!
Our Life as a Family… things have changed a bit…I am fully unable to get it together for myself in the morning between feeding both the boys… I have realized the days of leisure are short lived. Getting out of the house for morning appt’s is comical. My head spins 360 degrees. Mason is adjusting and has outbursts here and there, but at the end of the day all he wants to do is hug and kiss Grady. He wants to sing “Chicken Fried” or “Itsy Bitsy Spider” to him or just hold him. Mason has continues to go to bed at 7 at night and sleep a full 12 hours. Amen. Paul changes diapers and gives a pumped bottle from time to time. He loves being a dad to two boys and loves to call me from work to see how his “boys” are doing. Grady is sleeping in a co-sleeper for most of the night. I had to trade in the bassinet because I couldn’t see him and was paranoid with his irregular newborn breathing patterns. I am not going to lie, I broke all my mommy rules I had firmly in place with Mason… I often co-sleep with Grady, and I LOVE IT. Naptime for Mason is at 1pm and he gives me a good 2-3 hours, I put him down and then feed Grady, then you know what I do? I take a Nap too! Even if there are dishes to do or laundry to fold or bills to be filed…and guess what, they will be there tomorrow but days to cuddle with Grady will slip away and I won’t get them back. So guess what, I take every bit of cuddle time I can with him… every single second. Do I feel guilty getting 9 hours of sleep and then napping at the age of 25? No…days like these are priceless and are cherished. I could stare at him forever. Sounds silly but I like to rub his nuchal fold till he drifts off to sleep, its so soft and squishy… a little extra for me to love on.
Happenings and Support….We have not starved since Grady’s homecoming we have had three wonderful meals dropped off at our house from some wonderful Grace Women. We often spend time next door at my Mom & Dad’s where we find Love & more Food! Yummy. I am slowly beginning to cook or should I say find time to cook. I have also found great support from a friend at church who is a mother to a 3 year old (Wes) who happens to have Down Syndrome. Her experience, wisdom and faith have become a comfort and safe zone. We have big plans as we go through this together… It is nice to have someone who who knows Exactly how I am feeling. Grady has made two trips to the park, a visit to my co-workers at the school, and to Church this past Sunday. All places he was greated with Love as if his extra chromosone was invisible. I saw a lot of God Goggles. I was encouraged. Of course I have had a few people take a second glance, but I am chalking that up to his “extra” cuteness.
My Personal Experience as a new mother of a child with an extra chromosome in month 1 : I have learned to take one day at a time… when I think to hard about the future or about the next step or stage, I find myself in a state of anxiety. I have a lot of time to think while breast feeding, and sometimes I let my mind wander too much. Yes, I have been disappointed in family members who haven’t visited but I am so Over it now. The only tears that I have shed since he has been born are the times when I stare at his beautiful face and get caught up in how much I care for him and love him. While sitting in church this last sunday, I happened to sit next to a newborn boy about the same age as Grady, I looked over at him for a few times and for the first time since Grady arrived I noticed the difference in his appearance. His features are smaller mainly his ears and nose compared to the typical child, but not for a moment did I get emotional. I can totally embrace his differences. I love his small nose and his face. I was so proud to show him off to the other new mommies. I am so thankful for God to give me Grady, and I can already feel my heart softening and demeanor starting to walk a more graceful path. When we were singing at church I just wanted to lift him up in praise and thanks….
The month ahead- We begin the Early Intervention Process: for those of you who don’t know what that is: Grady qualifies for a variety of services due to his diagnosis. They include but are not limited to: Speech Therapy, Occupational Therapy, Physical Therapy ect.. In New York State it comes free of charge and all services are performed within our home. (thank you Tax Payers: for the first time I am seeing a positive outcome from those ridiculously high taxes my parents have paid into all their years here!) Early Intervention begins almost immediately and it’s goal is to build the child up in all ways so they can work through their possible and/or expected disabilities and achieve various goals. We start with an initial evaluation this week. I have more to blog on this… Gooo Grady!
Another Pediatric appointment for weight check & our appt. with the Genetics doctor for a follow-up….