A long overdue update

It's hard to know where to start after more than 3 weeks away from you all but I'll begin with this: Sarah and I are doing well and little Brinley is doing great! Life is busy and exhausting but in that I think we are not alone. Since bullet points have been very popular and it helps me organize my thoughts let's get to some:

• Brinley went on her first vacation. We got to spend a week up at Indian Lake with Sarah's family. It was a nice time and although relaxing comes at a steeper price these days. We did get to do some and having family around to help with the kids and just spend time with was great! She did great despite some concern midweek about a low heart-rate (more on that soon)
• Brinley had a couple of great appointments today with pulmonary and ENT. Pulmonary is very pleased with how well she's doing and because of her apnea type symptoms that she continues to display will be trying her out on prevacid to see if what we are seeing is due to reflux. Her ENT doctor was very impressed at how well her mouth, chin and jawline are developing and was surprised at how much progress she'd already made on her own. To this we can only say thank you God for answering all the prayers going up for Brin.
• Brinly is getting rather huge. She is up to 13lb. 6oz.
• She has started her physical and speech therapies and is making some good progress. Her speech therapies will be a long road as we work on getting her tongue to lie flat so she can work on swallowing, eating and speaking. This is an important one so please make this a Brin prayer priority!
• Her eyes are getting better with focusing, though she is still on Robinul, albeit a very low dose.
• Another prayer point: that the nursing care would begin very soon. If I had to estimate I would say within the next 2 weeks but we don't have a definite yet.
• There's a lot more to say but I am very nearly asleep typing this so I will leave you with a bunch of pictures and a couple of videos to enjoy and we'll write another update soon to fill in the gaps.
• Thanks to everyone that continues to bless us in so many ways!

Good news, bullet points and musings

It's only been 3 days since Sarah posted but it has been a looong time since I did one. I've missed you all :) My body seems to be adapting to less sleep at night so I guess that's...good. Life with Brinley is becoming more "routine" and therefore easier to manage to a certain extent. We are feeling more rested in general and that makes our coping mechanisms more durable; when you're exhausted everything just seems so much more overwhelming, right? We continue to be blessed by so many people in so many ways to the point where it is almost too much just to keep up with saying thank you, so if you've done something for us and we haven't told you how grateful we are then please know we are humbled and thankful for you!

Now, I like bullet points. It's how I think. It lets me jump around in short bursts. So that's what you're getting:

• This morning Brinley had x-rays of her head and an ultrasound for a dimple toward the base of her spine. Both came back normal!!! The head will continue to be monitored but the cranial sutures are not fused despite the small soft spot so praise God!
• I like thunderstorms. Today was a good day.
• We had a great assessment team here for determining Brinley's therapies that she will need. Speech, physical and occupational. These will begin very soon.
• Pi is the ratio of a circle's circumference to it's diameter.
• Brinley has started enjoying falling asleep on our chests, face down. It's adorable.
  
• Medically, right now we are entering a mode of just keeping Brin growing and developing. We're able to concentrate more on the true baby development that has taken a back seat up until now. 
• Brin also had x-rays done of her feet and if the structure turns out to be a certain way that would become worse as she grows then they'll have to do something around 6 months, otherwise no surgeries until about 1 year old.
• Coffee >> Tea

We have really been so richly blessed by God through all of this, though at times I'll admit, it can be hard to distinguish the blessing from the sorrow. The more of this time that is behind us the easier it is to see how God has worked through it all and the more it is coming into focus what He means by His command to "be still and know that I am God". He sees Brinley now, in a year, in 5, 10, 30 years and He has a plan for her. We get to be there along the way to see and so do all of you with us. That is awesome to think about. We mourn and are comforted, feel joy and sadness, excitement and exhaustion, are cranky and patient in turn but in all of it, the highs and lows, we know in our deepest being God's unimaginable and unending love for us. I can almost hear Him saying "keep going, you're gonna want to see this next part! It's awesome."

Pray for us, that our hearts would always remain soft and pliable before God. Pray that even in our exhaustion Sarah and I would be able to be patient with one another and with our children. Pray that we will soon get to a point where we have enough in us to more than just survive, to overflow and pour out! To be a source of help instead of a sink.

We made another trach baby doll (with a bonus G-tube of course). The surgery went well.