Our new normal...for the time being

The past couple of weeks we have been settling in to our new way of doing things. I believe they call it...survival...yikes! All in all, things have been going well, but I won't lie and say that it hasn't been hard. We certainly did not anticipate how difficult it would be to juggle the number of doctors appointments and/or consultations we continue to have with Taye. Not too mention, the transition from one child to two.

I can sum that last sentence up in a phone call I received from Benjamin as I was driving home from work one day last week. I believe our conversation was "hey, you gotta hear this". When he held the phone up, to what I imagined to be an interesting scene, all I heard was one child screaming until he took a breath so the other would "outshine". Oh my! When I pulled in the driveway, I remember getting out of the car, taking a deep breath and diving into the role that meets me as soon as I walk in. (what happened to that transition time after work....or a nap?)

Benjamin has been playing the "stay at home dad" role as determined prior to completing the adoption. When we made this decision prior to the adoption, I know he was excited as I was fortunate in being able to take the first leave with Mikias. With my new job of working until 4:30, he certainly got more than originally bargained for. Although I know it must be difficult, Benjamin is doing amazing.

His "new normal"...Monday-home both boys. Tuesday- home with both boys & then PT/OT afternoon Wednesday- Mikias at daycare with the tumblesbus while every other week an ultrasound or CT Scan for Taye... leading up to surgery. Thursday- Mikias at daycare while Benjamin takes Taye to PT/OT followed by the ever relaxing Friday of being home with both boys. Last week was my first full week back at work and by Friday night we both were exhausted. But, hey....we are not complaining. We have a good thing going on over here with nightly walks (sometimes to the park) in which I can't think of any other place to be in the world.

Taye continues to keep us smiling. I have to admit that when people ask me how he is doing, I would love to say very confidently "good". I find myself so guarded and protective of him as I still feel like we walk on uncharted territory. His PT sessions go well. He is definitely gaining strength in his mid-section as we only need to allow him a "lean" for sitting. This is an improvement. He more comfortably rolls over on both sides (including the "skull-less" side). OT has been more difficult as he falls asleep often and struggles a bit with attending to things. We are in process of identifying if he may have a "sensory processing disorder".

His daily routine is improving as we are actually able to get him down for a nap and his night sleep has longer intervals. He certainly continues to eat like a champ. His latest endeavor was sweet potatoes! We take all of this as a sign that he is attaching to us and starting to feel more comfortable.

Last week his ultrasound indicated that the fluid found on his brain noted in the last CT scan is still there, but not growing. It looks like we are still on track to have his surgery June 15th. I would say my favorite growth seen thus far, is that he appears to recognize his name "Taye". It kind of feels like he is healing and growing into this new name. Certainly, Sintayehu (his middle name) will always hold a place for us, but Taye certainly has a nice ring to it...especially when he looks over and smiles.

Lately, we have been setting up follow-up appointments with various entities. We have a follow up appt later in the summer for his eyes, a neurology appt early June to determine a plan for the current seizure medication he is on, and this Wednesday is the evaluation for "early on" services offered through the school district. For the latter, he will have a whole team of early-on educators to determine what, if any, services to provide to ensure the earliest intervention possible in preparation for school. Honestly, the idea of an IEP for my 8 month old scares me, but the fact that this is even possible is extraordinary. At very least, we will have very complete record of his progression. Honestly, I think he deserves all this attention. He is making up for his first 6 months. Besides the fact, he is super cute and you just want to love on him all the time.

We also have a date set for our "welcome home" visit from the adoption agency. I almost forgot we had something to do to officially complete our adoption. I am pretty sure this was already to have taken place, but our agency has been great with giving us space. The US Gov't...well, not so great as his green card arrived with his name spelled SintayeMu.

Overall, Taye, aka... Sintayehu , SintayeMu or our little miracle still reminds us daily how much we have to be thankful for. That feeling is still so fresh...