Brinley is 4 months old. 'Bout time we gave you an update!

I am just going to dive in....
*While both Peter and I enjoy blogging, each post takes a while to write, find and upload pictures, etc, so we have not had that much time and energy lately.

*Our nursing care started last Wednesday! This is obviously a huge answer to prayer. We were able to keep the same awesome nurse "J" that has been here off and on since June. We are also meeting and training other nurses. We are filling the daytime positions first (since I still can not do all the kids/chores/meals by myself and Peter has to work), but hope to add two nights a week as well. We realize sleep deprivation is a normal part of having a baby, but this time there is not really an end in sight for it, so we're looking to maintain long-term health.

*Brinley's adaptive stroller is finally ordered and should get here in 2-4 weeks. We have been using our regular Graco stroller, but it is simply not made to hold that much weight (O2 tank, suction, ventilator, feed pump, feed and of course the diaper bag) and has started to fall apart. Brin's physical therapist (is great!) is optimistic that she won't need an adaptive stroller for very long, but it will help now.

*Brin has hit 15 pounds!

*OH, this Monday, we went to the pulmonologist's office for Brinley's sweat test (CF) and it came back negative! Praise God!

*Monday was also plastics. They were hoping not to do the foot surgery until spring, but it turns out that Brin has a whole extra tarsal/metatarsal so the curvature would continue and cause more damage and pain. So, now we are looking at January/February for surgery now. The ENT Dr will do an endoscopy at the same time, so it will be a balance of making sure she is old enough to get the measurements that he needs (which will help determine the mouth/airway surgeries) and trying to prevent more curvature in the toes....please pray that we can settle a surgery date that will work well for both of those needs.

*We have started Brinley on a high dose of reflux meds and that has helped tremendously with the frequency and severity of her desats. She hardly ever needs her vent during the day now. The other night "J" did a night shift and Brin didn't need the vent for her SATS that night either! She was on it for half an hour for moisture. We're hoping to get a mist collar soon to help manage that.

*Now that Brin is so big sisters feel very comfortable "holding" and "snuggling" Brin. To us it looks more like wrestling and choke-holding, but Brinley loves it! Her sisters are her absolute favorite.

*Brin has the best physical therapists! Yes, two. One does the muscular coordination and strengthening and one does miofacial release. They rock and Brin has improved the most in these areas.

*Someone smiles now! She is just starting to flail around when excited too (a milestone that the developmentalist was concerned about because she hadn't done that when we saw him).

*We are trying to help her start focusing on and interacting with toys, books, etc

*She makes a noise! It's this little lip fart thing that she started doing the other night. Peter caught it on video. This is how we "talk" now.

*I took Brinley out to see some of my extended family for a few days the other week. We both survived! She got to meet her great-grandparents and many aunts, uncles, and cousins.

*A day a local beach with friends. Brin slept through most of it. It was crazy hot and mama got a good burn.

*The result of trying to keep the big sisters sane while we were stuck at the house training new nurses.

*Be still my heart!

*Brin is loving sitting lately. She tries to sit out of her carseat, or if you're holding her like a baby, she will fuss until you sit her up. She only lasts a few minutes at a time in the Bumbo, but isn't it cute?!

*Prayer points- Brin's tongue is still way back there...needs to come forward.
                        There are some things going on at church and we have felt our prayer covering falter a bit. Please continue to pray for us. I know it's been 4 months, but we're really still starting this journey.
                         We had an appointment with a pediatric developmentalist (lovingly referred to as Dr Doom and Gloom) last week. I cried for a week. No joke. He was concerned that her brain isn't growing and developing as it should. I can not emphasize enough how hard it is waiting to see if/how she develops. We want so badly to be able to keep Brinley home and part of our family long term. This is the thing that I have the hardest time allowing God to give me peace about. If there was anything that I could do to fix it, I would. The bottom line is that she is still improving and developing and we celebrate each and every mini milestone.