The EI teacher (early intervention) came again this last week (they come weekly for 2 hours). She is concerned with braxton's muscle tone. He is definitely tighter than xander. Most preemies have tight muscles because they were not in utero long enough to get the flexibility that newborns have. They are stretched out for months and when they are touched, they tend to extend their arms and legs in protest to whats happening to them at that moment. Through time and stretching exercises, this tightness should go away. If it does not, or gets worse, that's when a neurologist will step in and diagnosis. Right now, Xander can touch his toes to his mouth (with my help) and braxton still has about 7 inches to go.
What does this mean? She still isn't recommending o.t. and p.t services, but wants us to continue to stretch him out throughout the day. Also she taught us infant massage which will also loosen his muscles. As we are well aware of the damage the brain bleed did, we are not confessing that these are signs of cerebral palsy. throughout the NICU stay, we were told that he is at a "VERY HIGH RISK" for some sort of CP. This can range from being a toe walker, to not being able to walk. I am not being naive to the fact that this is possible, and I do see the tightness, however I am still praying and trusting that he doesn't have any disabilities.
We go to the Loma LInda high risk infant follow up clinic in april. This is where they will see all the specialist at once and should get a referral to OT/PT at this time, if they see fit. We will see some of the doctors and the pt that worked with them while in the NICU. I'm anxious to see their reaction when they see them. Especially the one doctor; this doctor that runs the follow up clinic is the one that advised us to "stop all heroic efforts". We'll see what she thinks now. :)
As for his eyes...since I last sent the email to pray for him, his eyes have improved! His left eye is still very crossed, but both phil and I (and others who have seen him) have noticed that his right eye stays more focused. I suspect there will be some sort of intervention needed (probably patching). He is coo'ing and smiling a lot more too. He tries to grab hanging toys and can roll over from his back to his tummy (thats a huge milestone). Xander is doing much of the same. However, Xander is still more of the little social butterfly; he LOVES to be talked to and will laugh and coo at you all day if you let him. He is doing really well.
Mr. Caden is growing up soo fast. HE amazes phil and I everyday. He is a good big brother. He loves to hug and kiss them, but still has his occasional "why are these two little things in my world" attitude. He is learning to be patient, but lets face it..it's hard for all of us.
As for mom and dad...we are still breathing. I can't say we have adjusted...and I'm beginning to think everyday will be a new adjustment. It's a process...a process that never ends. And that is what I have come to realize. I have a daily choice. A choice to smile and be happy. Or to cry and be mad. I pray to GOD that I can make it through the day with more of the smiles than the tears. More often than not, that is how it looks. God is teaching us a lot right now. Some days I don't feel like I'm a very good student. Other days, I feel blessed to be in this situation; as I'm learning so much!
We are continuing to pray with and for you all. The boys pray for the you all unprompted. God is good and his plans stand firm. Keep looking to him for strength each day. We love you all.
ReplyDeleteThe Froese Family