There are a couple of things that have changed in Brinley's treatment lately:
-She has started with physical therapy. At her first appointment her therapist was surprised at how much progress Brin had made in the month between her evaluation and treatment. Since then she has continued to progress each session. At first it was all about head control and we are now moving on to weight bearing in her arms as well as some trunk control. She is even starting to sit with support! "C" (the therapist), said that a lot of babies with similar backgrounds to Brinley are not comfortable in any position out of midline (lying or sitting flat basically). So far, Brin has handled every position well. She definitely has a way to go and prefers her right side, but she is doing well.
During PT and conked out after ;)
-Speech therapy. Where to begin....basically, Brinley's tongue has 3 lobe shapes. They are connected, but make her tongue essentially fold in half backwards. I have never seen or felt the top side of her tongue. During her speech sessions Brin is typically upset. I end up having to suction saliva out of her trach for hours afterwards. It is very slow moving and discouraging. Imagine putting your finger in your baby's mouth to the point where they gag and trying to scoop their tongue forward....no fun for any of us. We understand that this will help her, but honestly, it's the part that we are the worst following through with. She used to tolerate the massages that we need to do on her cheeks, but not any more. Please pray that Brin starts to relax during these times so we don't feel that we are torturing her and so her secretions aren't as severe.
-Apnea. This has been such a journey! This past week we met with the pulmonologist and he was concerned about the frequency of her desats (when the O2 levels in her blood drop significantly). He said the cause is likely one of three things: aspiration, reflux or seizures. During her NICU stay, Brin had an EEG that came out normal, so we are thinking it's not seizures. The most likely culprit seems to be reflux. We did start her on zyrtec and it really seems to help, but the Dr had mentioned that some patients need it 3x a day, and we feel that may benefit Brin. We are planning on calling Monday morning to see what he thinks. We do know that aspiration causes some desats and it is hard to tell what causes them unless you're really watching and happen to notice if she has recently swallowed or not. There does seem to be a trend near feeds and before her next dose is due, so we think we're on the right track. Today she has had a few events, but yesterday, Brinley didn't need her vent at all!
Brin's first snuggle with her favorite red-headed uncle
-Me. While we were on vacation I really struggled with how "normal" everything felt when there is this glaring difference having Brin and all her equipment. Having to plan to the last detail. Taking turns out by the fire because she can't be near smoke, etc. It took me several days to let go of schedules and diganosis and just relax. While processing my thoughts I looked back at every blog entry just to see where we had been. It felt so strange to read back the words we had written. The depth just didn't seem to come through. It is just so hard to put into words the ramblings of the human heart. Oh well. Peter and I are getting closer to being able to go out on a date and the very thought of that is exciting! Our nursing care should be able to start in a week or so. We got approval from our insurance and are starting paperwork with a nursing agency on Monday. Please pray that we will have wisdom in scheduling, staffing, etc. Having people in your house so often can be a very complex thing. Add into that the fact that I really want to be Mom to all of my kids, and trying to find boundaries and letting go where I need to (because, I honestly can not be Mom to all of them at once right now) and it is even more tricky.
"20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." Ephesians 3:20-21
He IS able, and we are watching and waiting and praying to see how He is going to work all of this out for good. It was so encouraging to hear from her ENT how much better her mouth looks. He is the only one that has actually scoped her and has been in the picture since the beginning. He actually said "This doesn't even look like the same baby!" That my dear readers, is God's hand of healing. More tissue in her mouth, development of her chin, the tongue moving forward more- these are things that are explained in no other way!
Thank you everyone who has continued to pray for and practically love on our family. We are humbled and blessed by our church body, friends and family. May God richly bless you in return! Keep standing with us. God has this.
Brin is chunking out so nicely that sisters are getting more confident in holding her and moving her around. Snuggles with Raina while watching Swiss Family Robinson.
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