Those Baby Blues

Yesterday was a big day, but we made it. God took me one step at a time, through the anxiety, through the fear, through the disappointment, and all of a sudden here we are at the beginning of a new day already. Yesterday wasn't all bad, of course, but it wasn't easy. (Every Friday since Judah's been home I've heaved a huge sigh of relief when Jared has walked through the door and said, "I made it". I keep wondering when every day and every week will stop being so hard or challenging. Jared thinks it will be awhile. Joy.)

I really like our Neuro-Ophthalmologist. He speaks quietly and calmly and he has gentle hands. He is also compassionate while being straightforward. Overall the news was positive. Dr. L. believes that Judah's inability to focus or track is just a delay. (Those developmental delays...) Given time, he thinks Judah will get there. (We're fine with the fact that Judah has his own timetable for things...rather, God has His own for Judah...we know he'll get there.) He has a weak muscle in his left eye which may need to be surgically corrected later, but the dr. thinks that could resolve itself in time. He also has a hard time moving his eyes vertically. The muscle or nerve (can't remember which) that controls that is in the midline of the brain - also the part of Judah's brain that did not develop properly. (Is there ever anything improper about God's plans or designs?) But his ability to move his eyes better can also change with time. The shape of Judah's eyes is also something to consider. He has "droopy eyelids" (super medical terminology) that slant slightly. Interestingly enough there are 50 known syndromes that that is an identifier for. His eyelids can be surgically "repaired" later on if they hinder his ability to see well. As he grows, and his face elongates, though, hopefully that will change. The last concern is about his chiasma, the point where the optic nerves meet...which happens to be right above the pituitary gland...darn. If the chiasma is missing, then Judah would be blind; however, the one vision test that Judah did respond to was when the dr. shone a light in his eyes. Dr. L. is confident he's not blind - thank You, Jesus! (Another evidence of God's grace: holding me up and keeping me calm as I held Judah and watched his continuous blank stare through every vision test. God is good.) If his chiasma is underdeveloped then Judah will be visually impaired. The dr. needs to get a look at the MRI Judah had in the NICU so he can study this part of his brain. I'm trying not to think about it too much as I wait for his call with the results. Again, I cling to the Lord and His grace.

Judah had his 2 month well-baby visit with our pediatrician yesterday afternoon. Maybe the next appt. with Dr. A. will just be a normal check-up...because this one was more...again. Good news: our little lion cub is now 8lb. 2oz. and 21" long!!! He's officially on the chart, sitting comfortably in the 3rd percentile! (At least it's not the 1st!) He was able to get most of his vaccines yesterday, and because of his weight gain, we don't have to go back for another weight check for a whole month:) Bummer news: Judah couldn't receive his DTAP vaccine because of the risk of seizures as a side effect. Apparently, the neurologist has a note in Judah's file that, because of the way his brain developed, he's at risk for developing seizures. And yesterday I had to tell Dr. A. that Judah has been tremoring again like he was in the NICU. Which means that next week it's back to Childrens for another EEG to make sure he's not actually seizing. If not, then he can be immunized. If so...I don't know. I just realized we'll be at Childrens twice next week. Ugh. Will this ever let up? Blood work, tests, more tests, more blood work, wait, wait, wait for results...this is not the life I had envisioned for any of us...especially for my tiny, helpless boy. It's just not fair. More grieving. It's a tiring, overwhelming, daunting task to be the one responsible to advocate and care for this beautiful little gift! I don't think I'll ever know why God chose me. Jared I can see. Me? Especially considering the fact that God is very intimately acquainted with every one of my weaknesses and failings. That verse about God refining us with fire... Well, it's hot in here. "If you can't stand the heat, get out of the kitchen." Praise God that He enables me to "stand the heat" so that He can continue His good work in me. Christ in me. It all comes back to Christ in me. Wow, this has been quite the rambling... Must be lack of sleep.

Had a little celebration in the kitchen the other day when Jared was holding Judah against his chest, and Judah held his head up and away from Jared!

One more thing... We needed to find a pediatric dentist for Lydia, because our family dentist doesn't see kids under 3. The dentist that we "just happened" to be referred to served on the dental team at the BoysTown craniofacial clinic for 2 years! God has paved the way for every single step of this journey for Judah. And we got a really cool dentist for our other kids besides:)