Friday, December 19, 2008

I hope you enjoy the below photo of Jonah being snuggled by Grandma and the video of Noah playing patty cake. The video is a bit dark but hopefully you can see what a cutie he is!

Jonah now weighs over 19 pounds (19.5 to be exact) and is a chunky little guy. He is 28 inches long. Noah is still attempting to catch up, he is shy of 18 pounds and a bit over 26 inches. We just picked up "Yo Baby" to add to his diet and it is a high calorie yogurt (110 cal per 4 oz.) We hope he will catch up to his brother soon.

Jonah's MRI turned out to be a very, very long day. We showed up early as they asked but they ended up being an hour behind so we sat around until 1:30 waiting for the anesthesiologist. Thank goodness Jonah did well for the MRI.

After we headed down to meet with his neurosurgeon. This clinic was also behind and we waited another hour to get in to see his specialist. We reviewed the MRI. PVL was present (Periventricular Leukomalacia, which is damage and softening of the white matter of the inner part of the brain that transmits information between the nerve cells and spinal cord) which does put Jonah at a higher risk for a Cerebral Palsy diagnosis but this is nothing new to us. Yes, in some ways it means a closer step to a CP diagnosis as PVL puts infants at a very high risk for CP but we have known the high likelihood of this since Jonah's birth.

On a positive note, the neurologist noticed Jonah's developmental progress since his last visit so that was exciting to hear. Grandma Langston also commented that Jonah has made good progress since October developmentally.

We talked with Dr. Magram about the diagnosis of CP and his response was that generally he waits until the age of two and expected that it probably would be on his left side since he seems to struggle specifically with his left hand. He encouraged us to continue therapy but we had an interesting conversation about Jonah's orthotic helmet. I guess his experience has been that babies with hydrocephalus generally don't show a lot of improvement with orthotic helmets due to the fact that their heads generally grow a lot slower and by the time there is growth the bones have generally become to rigid or fused together so it is nearly impossible to reshape. I did tell his specialist that we were able to get rid of most of the Plagiocephaly in the back of Jonah's head (a malformation of the head or oblique slant to the main axis of the skull) and it has reshaped and now we are focusing on rounding it out on top and the sides so some improvement has already happened and we intend to keep trying. He didn't discourage us from continuing but just wanted us to know that Jonah's head will never completely reshape which we know. So that was definitely an interesting conversation. I already see an improvement in the shape of Jonah's head, we plan to keep at this for a few more months to see if we can't see any more improvement.

Another fun happening, Jonah has started chattering even more and his new thing to do is say "Ba!" with great emphasis. We are happy at his verbal attempts as one can only imagine how difficult it must be to interpret the world around you without being able to see anyone's face clearly, so learning to speak is even more challenging with Jonah but he is trying!

So that is our current update. Grandma Langston and I got caught in a snow storm and where stuck in Valencia overnight Wednesday. We were not able to go over the Grape Vine until Thursday afternoon. So needless to say between our trip to Fresno, finishing our kitchen counter tops and our trip home from LAX this has been an interesting week!! Our kitchen counter tops are finally finished, we had the floor tile crew come today and do some touch up work. Now we have curtains left to hang and another overall cleaning needs to happen to the house, hopefully before Christmas.

Grandma and Grandpa Langston have been so helpful. I am so grateful they are here. Both boys just love to interact with both and get lots of love and kisses.

We hope to get an e-card made up for Christmas and out, I just need to find time to get pics of Jonah and put it together.

We love each of you. Thank you for your continuing support and prayers. Always remember Noah and Jonah as you pray because they need as many blessings from above as can be granted to continue to affect their ongoing development.

Love, Shane and Michelle

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