Comparisons and milestones

Being a twin, I have always found that I was compared in almost every way possible to my brother. It is just natural for people to compare twins. I find myself comparing Corinne and Jacob as well. Although they are fraternal and not identical as my brother and I, comparisons can be made. All babies are expected to reach certain milestones at certain expected times. At the age of ten months, Corinne and Jacob have not hit the same milestones.
Corinne cut her first tooth three months ago; Jacob, last week.
Corinne is crawling on her hands and knees while Jake has not learned to roll over yet.
Jacob is about 4 pounds lighter than his sister.
Corinne eats whatever you spoon into her mouth with little to no complaining. Feeding Jacob by mouth can be challenging.
While it is obvious why Jacob is so delayed it may be frustrating to a parent who is expecting too much. If you are reading this as a parent of a child with HLHS or that has suffered a stroke or other brain damage - do not get hung up on the milestones. It is a waste of time and energy worrying about silly things like that. Your child has gone through a serious trauma, let the child proceed on their own timeline.
When my older son was reaching the milestone the experts say he should start talking, he was obviously delayed. He had so many ear infections that we had to have tubes placed in his ears to help them drain. He had temporary hearing loss due to the infections. I was so worried that he would fall behind. I was constantly comparing him to his classmates in daycare. He is now 5 years old and the picture of health. I was worried he wouldn't talk as quickly as the other children but that worry has evaporated - I can't get him to shut up half of the time! Milestones may seem important at the time, but they are only meant to compare. If you are really very worried about your child not meeting a milestone, seek help. There are many social services that are ready to help you and your child get the help that is needed.
If you are the parent of a special-needs child, you may have already found your inner-strength and are coping just fine. If you have not yet found your inner-strength - don't worry about it, there is no milestone for that.

What I'm thankful for

This Thanksgiving is the beginning of Jacob's first Holiday Season. It is time to take into consideration all of the things I am thankful for:
My family - without them my life would have no direction or meaning. I have received immeasurable help from my family all of my life and now even more.
My friends - what can I say that could ever be enough to thank them? I have always valued my friends, but I really never appreciated it like I do now. From my Brothers in my Lodge to the friends and acquaintances I have made in my 43 years. I have never appreciated how much a kind word or uplifting phrase could lift my spirits. Friends are the currency of life and I am wealthy with them.
My son's caring staff - over the last year, Jacob has had the finest staff in the world waiting on him.  I have lost count of the doctors, nurses and techs (and thank you for the comment last week) that have helped him at every turn and bump in the road.
Cigna and AFLAC - I don't mean to make this a plug for the insurance companies, but without them I would be in one helluva hole.
My boss and my wife's - for being so understanding when I have to take a day off on short notice for an unseen doctor's appontment.
Many people have lost the meaning of Thanksgiving but I will never. Thank you for following this blog. I hope I can help or inspire someone somewhere.
Happy Thanksgiving to all!

Gimme a smile

Jacob seems to be very happy to be at home. This may be hard to understand but he is beginning to recognize me. Corinne, of course, has instant recognition of me and her mom, but Jacob does not. Jacob and Corinne both did not recognize us back in April when they were split up for an extended time. The brain damage that Jacob incurred during the stroke destroyed a good portion of his original personality. Areas affected involve memory, speech, vision and emotional response. The best thing I have seen today is his smile.  I have been trying to take a photo of him smiling but I may have a better chance of photographing a UFO; his smile is quite elusive. He has given both myself and Christina big wide smiles today. He may be both physically and emotionally delayed, but I think he will eventually come around. He is due to have physical therapy twice a week and the therapist has been very optimistic. Is he blowing sunshine up my ass? Who knows, but it is best to remain positive. I am not going to try to kid myself either. Expect the best - prepare for the worst. There goes my pessimistic nature again.

Life goes on...

Another week as passed and Jacob has become a part of the household in every way. His at-home physical therapy began yesterday and the therapist is confident that Jacob will regain the usage of his affected limbs. Jacob's brain has definitely started to rewire itself. It is a slow process but he has already come quite far. Since the stroke in April he has gone from semi paralysis to just weak and stiff on his left side. His locked stare to the right has all but vanished and the opthlamologist actually got him to follow an object in his left field of vision. I actually thought he was blind in his left eye but that does not seem to be the case. He keeps surprising me at every turn and has impressed on me the tenacity of human life. How could something so fragile be so strong?

One whole week with no drama

It has been one week since Jacob's last close call with the Grim Reaper. Thankfully this week has been pretty much uneventful. The incompetent nurses have been replaced with caring, smart and nurturing ones. You really can tell when a nurse cares. Her patient is not just another job but a human being. To me, Jacob is not just another baby, he is my son. A parent knows exactly what that means.
As we were trying to do last week, we are getting the twins into a routine. Jacob's easygoing nature is making this a piece of cake. Christina has introduced Jacob to the wonder that is "real" food. He has been started on applesauce and some bananas. He seems to enjoy the taste but hasn't got the whole opening of the mouth thing down yet. In the photo below Jake is being upstaged by his sister. She just couldn't resist leaning into the shot. Am I raising a Diva?

Home...again

Wow, that was scary. Of all the health threats and setbacks, this was the most frightening. I know that accidents happen - but this could have resulted in a homicide. I am not the type that bashes other people for making mistakes, but I think I am allowed his time. The nurse's actions were pretty damn close to incompetence. I don't know what kind of corrective action is planned for her but I want to be "in the loop". I don't necessarily want to see her fired, but I don't want it to happen again to someone else. We will not be inviting her back.
Today we are having a small celebration for close family. Christina put him in a really cute outfit for the occasion. See below:
He is even smiling more than I have ever seen him do now that he is home.

Murphy's Law

It has been a bad joke between Christina and I that if the doctors mention that something could possibly go wrong, it would. That just happens to be Jacob's luck. Today Murphy struck again. His new at-home nurse overdosed him on Lovenox, a powerful blood thinner. She gave him ten times the prescribed dose.
I was at work when Christina called and told me to haul ass and meet her at home so we could take him to the emergency room. Winthrop in Mineola and other local hospitals are not equipped to handle a child with HLHS. We were like a hot-potato, no one wanted to touch us - so off to Colombia we went. After an hour and a half in heavy traffic we finally arrived. We went to the brand new pediatric emergency at Colombia. The doctors and the poison control center decided that it was best to avoid the antidote and wait it out. It seems that the antidote carries its own threats. He was admitted around 9:30pm. So far it seems that there are no ill effects of the overdose, but time will tell. I think he is mostly out of the woods but the doctors remained worried about deleterious effects neurologically that may not show until later. More tomorrow. It has been a long day. I thought we were going to lose him today.

Habit forming

Now that Jacob has been home for a few days, we are starting to put a regular routine together. We have come up with a schedule that seems to be working OK for now. Jacob's nurse stays until 7:30 and we use that time to eat dinner, do JP's homework and bathe him. After that it is bedtime for JP and we have to get Jake ready for sleepy time too. Jacob is put down at around 9:00 after he calms down from the 7:30 injection. This is how they did it at CHONY and I certainly do not want him still pissy when we put him down. As he starts to drift off, I mix his nightly feeds and program his Infinity pump. I sneak in like a burglar and hook him up without much fuss - unless Corinne wakes up that is. I hate to admit it but the food pump makes life a helluva lot easier on his Mom and me. Now lets pray for an entire night of no-screaming. I really love having the whole family under one roof again. I'll have some photos to post soon.

Home

Jacob is at home with his family. This is where he really belongs. He is already interacting well  with his brother and sister. John Paul was showing him how to play Angry Birds on his mother's iPad. Corinne was inquisitive at the new arrival. Lots of work to do now so this will be a short post. Our whole schedule has been thrown into chaos as we determine the best way to care for the three of them. It has been a long time since all three rug-rats were together under the same roof.