7 Months

Today Jake and Luke turned 7 months. In some ways it seems like 5 minutes in other ways an eternity. Jake is healing nicely and he is starting to use his new fingers. He still is waking up a ton during the night which of course keeps us sleepless. He is very happy during the day so maybe he just wants to enjoy life more than sleep through it. In a few weeks, he starts his pre-ops for his head surgery which is unfortunate to come so soon. Feb 1 will be his head surgery at Cedars-Sinai here in LA then his second hand surgery will be May 2 in Boston. A tough first year that will finish just before the boys turn 1. Then we'll have a little breather from the OR. The boys are growing and as you can see in the photo are very happy and love each other.

Jake Has Fingers

Today, Jake got his fingers with the removal of his casts on both hands. He still has plenty of healing left to do as the skin grafts continue to take and the stitches dissolve. But, he has the four fingers in place and the fifth will come in May. Jake was much happier once we were home and of course all he wants to do is put his fingers in the mouth. To prevent possible infection of the open wounds, we aren't letting him until the stitches and fingers heal more. He wears splints now at night to keep the fingers in alignment as without them the scar tissue could pull them downward. He is much lighter now and looked way more comfortable as I put him down for bed tonight. Maybe just maybe he'll sleep a tad better. Well this first chapter is closed and we look forward to watching Jake learn how to use his new fingers and how he adapts. Here's a little photo of Jake tonight....

Phew

Well a rainy Tuesday in Southern California brought us to Cedar's Sinai for Jake's Cat-Scan. After a very long nervous wait, I brought Jake in and held him still as he rotated in and out of the machine. Then we walked to Jake's neurosurgeon, Dr. Danielpour's office. He infomed us that Jake does not have hydrocephalus and everything looked good on the scan. Very relieved. We will see him again for a pre-op on January 23rd and for Jake's first head surgery on Feb. 1st.

Dr. Danielpour said he was relieved to see us looking happier, the last time we saw him Jake was screaming his head off in pain due to reflux. A fellow parent with a daughter who had a bad case he had recommended maalox and it worked and now drew us a diagram as to how to prop Jake up on his side. He believes his lack of sleep is due to discomfort caused by the reflux. It's nice when a brain surgeon's ingenious invention is a pillowcase filled with rice mannered like two saddlebags. We will try it out well at this point I would try anything if I thought it would work. I am sure Jake will find his way back in our bed tonight as its the only way to limit his waking up 10 times a night as we can pat his back and shoosh him back to sleep in 5 vs 20 minutes.

Well next up is Thursday for the cast removal and Jake's first glimpse at his new fingers.

Big Week for Jake

A lot of attention to Jake this week. Tomorrow Jake has a Cat-Scan to ensure that he does not have hydrocephalus. This would mean excessive accumulation of fluid in the brain. The test and meeting with his neurosurgeon is precautionary but the condition is known to happen in Apert kids and Jake's lack of sleep could point to this as a cause. We obviously hope not but look forward to getting a confirmation that he's ok tomorrow.

Then Thursday Jake gets his casts off and will see his new fingers for the first time. We are excited for him albeit there will be much healing left to happen. It is the first step and soon Jake will be sucking his fingers like his brother.

We will update you soon but please think good thoughts for us!
Love,
L & S

Jake's Hands

Attached is a shot taken right after surgery showing the extensive work that was done to his hand. It really is amazing what they are capable of doing. We now have one major hand surgery down and the next one (probably in May) will separate the third and fourth finger to finish the major hand surgery.