Monday, December 31, 2007

It's been a crazy week, as I am sure it has been for everyone. Christmas has come and gone so quickly, although the toys piled in my house are a testament to the fact that Christmas was here. Plus the fact we are getting no sleep, what with playing Guitar Hero III every night til 11:30... does that make us bad parents??

On top of Christmas, we celebrated Tom's 40th birthday with a birthday weekend filled with events (what a great wife he has!), plus we have also been trying to gather together our things for our drive to Kentucky to see Dr. Mervis. We leave on Jan. 1. THEN, a week and a half from getting back from Kentucky, we are going to the Children's Hospital in Boston's WS clinic over three days. Phew!

One great big light from all this chaoticness will be hanging out with Lisa on our way home from Kentucky. Yeah! We are so very excited.

Oh yeah.. Christmas? We had an excellent day and Michael loved all his gifts. Brady's favorite ( I think) was his fleece blanket I bought at Bass Pro Shop... he kept pulling it up over his face to play peek-a-boo. :) And a little present for Tom was Brady's first real sucking from a straw. Of course it was Pepsi and now I think he is addicted... he definitely has a little sugar issue, methinks.

Patriots are 16-0!!!

In case you are living under a rock, the New England Patriots are now 16-0 ~ Woohoo!!! Michelle - I know you are celebrating with me out in the Southwest!

Sunday, December 23, 2007

Merry Christmas!

Amidst the malls, Playstations and wrapping paper... let's not forget what Christmas is all about. Thank you to all my blogging buddies who have helped me, cried with me and laughed with me. Merry Christmas and Happy New Year!

Saturday, December 22, 2007

The bloodwork is back and for the most part, everything is relatively normal. Calcium is back to 10.2, from 10.6 two weeks ago (I stopped giving him yogurt every day - every other day is fine, apparently). The only thing that is puzzling to his doctor, is that his magnesium and phosphorus levels are elevated. His doc found this a little weird and asked me to check with the nutritionist if there are certain foods he should avoid. I reminded her that we just started vitamin drops since we are off the Enfamil now, and she said that might be a reason for the elevations. So we stopped the vitamins until I talk to the nutritionist and his next round of bloodwork in a month.

Anyone else have these weird elevations?

Thursday, December 20, 2007

Just a quick update on the Braidster: We FINALLY got his bloodwork done this afternoon. Still not easy - the phlebotomist fished in one arm before moving to the next arm to check those veins. She didn't prick that arm, instead moving to his hand and got what she needed that way. Phew! That's over (for now...). We should hear something tomorrow.

The ophthalmologist appointment went as expected: he is the perfect candidate for surgery. His strabismus has actually gotten better, his muscles are stronger now, but still not where they should be. His vision is completely fine, ironically. So we are on the books for a February 5th, one-and-one-half hour surgery. How bizarre it is done so quick and we're all set.
Deep in the holiday rush of shopping, decorating, and caroling -- not to mention planning our January trips to Kentucky for Dr. Mervis and Children's Hospital Boston two weeks later for THEIR clinic -- we had to re-do Brady's bloodwork. Brady had his blood drawn about two weeks ago in one gigantic crying fit, screaming so bad he got the pitiki (sp?) rash on his arms. Normally, Brady is not a screamer; he does a huge cry when he gets injected then chills out. He started crying when he was being held down to get a vein and then it escalated. Well, his bloodwork came back completely abnormal, some tests not making sense because one part was fine, another was off, etc. After his pediatrician spoke to Brady's nutritionist, cardiologist, neurologist and geneticist, she decided on Tuesday to have Brady re-do the bloodwork and then we would go from there. Easier said then done.

After his pedi stated to re-do the bloodwork, Children's added a few tests to it and asked for Brady to fast beforehand. So, yesterday, we arrived at the pediatric lab close to home at 8 a.m. for his bloodwork, before his first bottle. He came in his pajamas and was pretty content. Of course, he did not stay that way. The phlebotomist handling the injections has done Brady before lickety-quick, so I wasn't too concerned about her abilities. She got a nurse in the other lab to help, as this little strong guy always needs two people to withdraw blood, mother not included. She was able to find a vein, but since he hadn't drank anything, his veins were even smaller than normal, which is hard enough as it is. She fished in both arms before she stopped, poor Brady screaming, of course. I stopped her from fishing after 30 seconds, as I know how that feels -- not too nice! I didn't want him to get a huge bruise, knowing we would probably have to repeat the process to get the bloodwork, and it wasn't helping anyway.

So today we try again. The good news is that I can give him his bottle, and just before he needs the next one is when I will do the bloodwork. The pedi office said that if we can't get the bloodwork with him fasting, oh well! We'll do it anyway. I'm not sure why Children's needs him to fast - I don't think we are testing Brady's cholesterol! LOL. We have his opthamologist appointment this morning, where I'm pretty sure she will try to schedule surgery for Brady's strabismus. I am definitely not doing THAT until February, at least. I don't think I can add one more thing in January.

It's so... ANNOYING when you are just going about your business, living life and then BAM! something bites you and the fact that your child needs this special attention is plain in your face. It's things like the screaming child doing bloodwork (I hope that's not how it is going to be from now on! He is two now so maybe he is figuring out what is going to happen at the lab.) that makes me shake my head and curse WS for putting my child through this. But I also had to go to two stores to find candy canes to bring to the Cub Scout Pack Meeting that did not have a peanut allergen warning for my older son.

It's all in that lovely game called MOTHERHOOD, much like Monopoly. Wanna play??? Instead of drawing the card that says "Go to Jail, Go Directly to Jail", you get sent to Motherhood Guilt Factory when your child tells you "You're mean!" Instead of landing on a hotel and paying the next player, you get to pay doctor bills. Instead of landing on a utility company and paying four times your die, you get to change four diapers in an hour because of diarrhea. Instead of collecting $200 for passing Go... you get hugs and kisses and "I love yous". All right... I'll play! :)

Thursday, December 13, 2007

My son Michael was born in 1998, not too long after the McCaughey septuplets were born. I have been reading about these kids over the years, watching them grow up. Last night, I saw their latest update on Dateline, about the kids in their tenth year. (This was aired last year, but I must have missed it.) This time, though, I was watching for a different reason: I was curious to see more about the two septuplets who had the more serious health problems, Nathan and Alexis.

Both Nathan and Alexis have cerebral palsy with other health and neurological problems. It broke my heart to see how much they have worked to get to where they are. They both struggled to be able to walk. They have had countless doctors' appointments, medical issues, and learning disabilities. I suppose in the back of my head I am thinking about Brady and all he will have to endure as well, and what he is enduring right now.

But then Ann Curry asked the question, "Knowing now where Alexis is, do you feel any regret about your decision to carry all seven babies?" The McCaugheys knew there was an increased risk of cerebral palsy by carrying so many babies to term instead of selectively reducing the number of fetuses.

The mother, Bobbi, answered. "How could I? Look at Alexis. There's not a person in this world who loves being alive more than she does. How could I feel sorry that I had all of my children?"

It's amazing how a different perspective can change the entire meaning of a life. Nathan has worked very hard, enduring two major surgeries, to walk. His father said that Nathan was "determined to conquer this physical impediment. That's what his legacy might be."

So what if it is easy for me to walk? It may be hard for Brady, but it may be easier for him to be happier in life than for me. It seems that way for little Alexis McCaughey. She is fiercely loved by her siblings... the brothers who run quick and play football and the sister who has been inspired by her to become a doctor. And Nathan has struggled, but he has also inspired others around him to be stronger, to strive for more than what was given.

I know all our children are inspirations. It may sound kooky, but I was definitely inspired by these little children, who have endured so much. I say "so much" , but they may look at me and think that the things that I have endured are "so much" when to me it is just my life. Perspective. Hmmm.....

Monday, December 10, 2007

Pats are 13-0!

Did everyone watch the game on Sunday? And by "the game" I mean the New England Patriots beating the Pittsburgh Steelers! Folks - that makes the Pats 13-0!! So here's a little joke to celebrate:

Three quarterbacks, Peyton Manning, Tony Romo and Tom Brady, go to heaven to visit God and watch the Celtics play a game. God decides who will sit next to him by asking the boys a question...

God asks Peyton Manning first: "What do you believe?" Peyton thinks long and hard, looks God in the eye, and says, "I believe in hard work, and in staying true to family and friends. I believe in giving. I was lucky, but I always tried to do right by my fans." God can't help but see the essential goodness of Manning, and offers him a seat to his left.

Then God turns to Tony Romo and says, "What do you believe?" Tony says,"I believe passion, discipline, courage and honor are the fundamentals of life. I, too, have been lucky, but win or lose, I've always tried to be a true sportsman, both on and off the playing fields." God is greatly moved by Tony's sincere eloquence, and he offers him a seat to his right.

Finally, God turns to Tom Brady: "And you, Tom, what do you believe?" Tom replies, "I believe you're in my seat."

Thursday, December 06, 2007

It's been a whirlwind week over here - Brady has moved to new levels!

Mr. Brady attempted to crawl by himself today! :):) It was just once, but he did it without prodding and without help. I know he still has mucho work, but just seeing that he is attempting and getting it is such a happy time.

Yesterday, Vikki, his ST, was working with him on sounds. She was doing the "sss" and saying "sun"... he dropped his chin, stared at her, then said "sun" in the total deep, gruff voice like the little boy in "The Shining" when he was saying "red rum" ( We almost fell over. I asked her, was he saying "sun" like he was saying Vikki had a "sunny" personality? She thought he could be saying "son" like he is the son. My mother thinks he might have been in the middle of calling us a name -- "son of a &%$#". We know he was mimicking, but that is big over here too. Any of it works for me!

Sunday, December 02, 2007

We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us.
~ Joseph Campbell

It has been hard for me to realize that I will not have three children, two being sisters; I will not be that perfect mother always having dinner on the table at 6 p.m. sharp; I will not never yell at my children or never let them watch TV so I can get a few things done; I will not be the mother who has never been to Children's Hospital; I will not be the mother who can take a backseat to a child's education career and let them "figure it out as they go along".

I will be the mother who fights for what is right for her children; I will continue to be amazed at what a great brother Michael is to Brady, maybe because they are seven years apart; I will be the mother who is most knowledgeable about her son's medical condition because I have to be; I will be the mother who will be a support and friend to those who need it.

I will be the mother who has learned that the lives we were planning on having may not be the ones that are planned for us. It is hard to remember... but now that I am finally enlightened with this knowledge, I will be a better mother, wife, friend, sister, daughter, person.