Friday, October 30, 2009

Good Medical News All Around

* We were finally able to get Clare vaccinated against H1N1.

* We potentially have already had H1N1 in our house, and everyone survived with a lot of sleep and a lot of Tylenol. ("Potentially" because no one was tested, so it's not definite, which is why we went ahead and still had Clare receive the vaccination.) Jamie got the brunt of it with almost every symptom and was out for four days. Simon, Clare, and Violet had fevers, sore throats, and general crankiness and fatigue for about two days.

* We received the results of Clare's lung scan, which showed lung output at 45-55. Almost perfect and better than her scan 18 months ago! Which means she is not headed into the cath lab anytime soon and will follow-up with the cardiologist with another echocardiogram and EKG in six months.

Monday, October 26, 2009

Blast From the Past

I found this old photo of my little sister Christina and I from one of our All Saints parties as kids. I have no idea who we are supposed to be (maybe Mom can help?), but I am pretty sure whichever saint I was did not really have those lovely dangly earrings and humongous glasses, however stylish they may be!

Thursday, October 22, 2009

A Prayer For All

The kids received a new prayer book that has a prayer for just about anything you can think of. We chose one for cousins tonight since they are seeing all their cousins this weekend, and they are so excited for Jasmine, Alex, and Casey to come to our house. I should have scanned the prayer before reading it:

"Dear God, we like our cousins.
When they come to stay,
We talk and laugh and run and jump
And play.

Then we have an argument,
We shout and yell and fight.
We want them to go home again
That night.

But when they're gone we're sorry,
Although they are a pain,
We miss them and we cannot wait till they come
Back again!"

What kind of prayer is that?!? Is it wrong to throw a book of prayers away??

Monday, October 19, 2009


It's one of those nights that even though I've been going all day, I still can't seem to fall asleep. Maybe a blog post will wipe me out...

We missed fall this year. Some rain, a few nice days, and now the temperatures are freezing. I sent both Jamie and Clare to school in their windbreakers with sweatshirts underneath in 40 degree weather because I hadn't hauled their winter jackets out of storage yet. Then we had snow yesterday. It didn't stick, but snow a couple weeks before Halloween is not allowed! Plus Shawn was away on business for three weeks. So we've been cramming in our outdoor fall decorating (hay bales and mums), pumpkin picking and carving, and putting together Halloween and All Saints Day costumes into a few short days instead of stretching it out over the month. Although Shawn missed out, my mom and I did take the kids apple picking with friends. They had a blast (even though it was freezing - apple picking in winter hats and gloves?!?). The orchard had every variety of apple you could think of, a play area for the kids, balloon man, and a wagon ride. With our friends, we had a total of nine children who naturally commandeered the wagon ride. They sang songs all the way out to the orchards and were pretty darn cute! So at least I've been able to do a little of my fall baking and cooking. Today was homemade applesauce. It was amazingly simple and delicious! Tomorrow I am aiming for pumpkin bread and apple gingerbread. I don't know what I love more - baking it or eating it.

Clare has her lung scan this week. Our local hospital agreed to do it unsedated, so that saves us a trip to Boston. Clare needs an IV in place to undergo the scan, though, so the hospital wants us to report to pediatrics 90 minutes before the scan for the IV placement. I hope they are just being ultra-conservative and don't want to chance being late for Nuclear Medicine. I really hate to think that it's going to take an hour and a half to insert the IV. Since it is looking like this is going to be at least a 2-3 hour appointment now, Shawn is going to take Clare alone. I can't remember if the lung scan results are immediate or not. My bet is that we will have to wait for the cardiologist to give us the news. Whether Clare goes into the cath lab or not rides on this scan.

I posted a long time ago about me personally having some kidney issues. I am not a fan of talking about myself, but I am undergoing kidney surgery next month. I am a tad nervous about the general anesthesia (only had an epidural with my emergency C-section with Violet) and the surgery and recovery itself (I have been told it will not be as bad as my C-section recovery, though). I am super nervous about Life At Home Without Mommy for 2+ Days, especially for Violet. I have been pumping and storing milk since I found out about the surgery, but finding the time to pump with four young children while almost exclusively nursing a 9-month old does not equal gallons of milk in my freezer. I know we will all survive my hospital stay (which will at least be two days if all goes well), but I still get a pit in my stomach thinking about it.

And if I don't go to bed, the kids will be greeted by Zombie Mommy in the morning...

Sunday, October 11, 2009


I love that this baby is all cheeks!

Wednesday, October 07, 2009

Cardiology Report

Clare had her six-month cardiology work-up on Monday. What a long afternoon! How did I do this monthly or even weekly??? It wiped me out for the week.

Good news and okay news. It could have been worse! This was her first official visit with her new cardiologist. He has been part of our practice since Clare was born, and I have spoken to him a few times on the phone, but we had only met one other time in person. He was the cardiologist, however, who referred us to Boston to have Clare's fistula repaired, so I was already giving him two thumbs up. After this visit, I am even more impressed. He is so thorough, and it's a breath of fresh air to have a new perspective on Clare. Not that we were ever unhappy with her old cardiologist (who moved away), but I was wary of the new change in doctors and am very pleased with the outcome so far. My only negative was that he wanted to talk more than I did - and that's only because I was done after almost three hours at the doctor's office with three kids, ages 4, 2, and 8 months.

Good news comes first - according to the echo, Clare's heart has not changed that much in the last six months. Although her stenosis has not improved, the vessels are all still small, and she has a leaky aortic valve, this has not changed for two years, which is considered good. He also listened to Clare's left radial artery where her fistula was, and it sounded normal. There is no palpable lump anymore, so the glue has most likely been reabsorbed as well.

The okay news is that since it has been two years since Clare had a cardiac catheterization, the doctor is toying with the idea of sending her back into the cath lab. He does not want her to get to a crisis point before something is done. He would rather have her undergo a cath so they can get a more accurate picture of how she's doing and do some dilations if necessary. Before this happens, though, he is going to send Clare to have a lung scan done. She can do this at our local hospital if they will do it unsedated (which they would not do 18 months ago when she had her last lung scan, and we refuse to have Clare undergo the risks of sedation just for a scan). If the local hospital won't do it, she can have it done in Boston. The lung scan will show if her lungs are working fairly equal, which provides a good indication of how her pulmonary vessels are doing. At her last scan, she was 57-43, which is pretty good for Clare. If the lung scan shows positive results, we will follow up for another echo and visit with the cardiologist in six months and re-discuss a cath then. If the scan is not good, Clare will most likely have a cath sooner.

The other okay news is that Clare's blood pressure was a little on the high side in all four extremities. Upon reviewing her list of medications, the cardiologist informed me that she was on a "baby" dose of blood pressure medication for her weight and age. I cannot remember the last time her dose was increased. He asked me what I thought of switching Clare off the liquid med and onto a pill - a medication that would be more appropriate for her age and a higher dose. A pill that she can take once a day in the morning? A pill that means I no longer have to sneak in late at night and give her one final dose of medicine before I go to bed (or on those nights I want to conk out earlier, I have to set my alarm clock to give her the dose)? A pill that means I no longer have to pack a syringe of medication whenever we go anywhere in the afternoon (even if that's just to pick Clare up from school)? Oh my goodness - give us those pills!!! Clare has been swallowing a pill for a long time now with her thyroid medication, so she will be all set with this one. The cardiologist did caution to start the new medication on the weekend when she will be with me all day, in case the higher dose causes any adverse effects. So we are going to start on Sunday. (I would start on Saturday, but I don't want to interfere with her new Special Olympics group - more on that later!)

Sunday, October 04, 2009


I feel like one of those plastic snow globes. Just when I think I can see the picture inside, it gets shaken up again and the snow falls everywhere blurring my vision. I have to wait for the snow to settle so I can try, once again, to clearly see the picture. And it never is clear. Not completely. There is always something still swirling in there. Even the tiniest bump sends it all flying once more.

Lately I am trending towards a negative outlook on everything. I don't know why. During Clare's first year, I definitely had my horrible moments, but, as a whole, I felt like I had it going on. We went through some very tough times as a family. Even though my life had been turned upside down, I felt like I coped amazingly well with it. Now this could just be my perception looking back three-plus years later. Maybe I've been this crazy all along. Recently, however, my coping skills are falling apart. Everything is catching up with me, and the stress is burying me in negativity.

I know how blessed I am. I count my five biggest blessings every day - my incredibly supportive, loving, hard-working husband and my four beautiful children. No matter how bad the day was, once everyone is tucked in their beds and sleeping soundly, I reflect on how much God has given me. Yet it's easy to feel this way when all is at peace in the house. It is so much harder to hang on to that feeling when the baby is crying, the 2-year old is biting the 4-year old, and the first grader is complaining that he doesn't want to do his homework, the little kids are too noisy, and dinner smells yucky (in that order).

It is incredibly hard to hang on to that feeling of blessedness when tragedy hits close to home. Last week, one of Clare's classmates passed away. He was a sweet little boy who had celebrated his fifth birthday only days before. During Clare's first year of preschool, it was just her and this boy on the extra day of the week. She loved him so much, and he was her first friend at school. She talked constantly about him at home. (See my April 2008 post Day Two.) When I heard the news on Thursday of his death, I was in shock and tears immediately filled my eyes. Sorrow for the family overwhelmed me - what a devastating loss for his parents and sister. How do you go on from there? I truly believe that this child is in Heaven with Jesus and is finally freed from the handicaps of his earthly body. Yet, at the same time, to mourn the loss of your child... I cannot even fathom it. And, selfishly, I rage against the fact that I, as a parent, am part of a community where children die. It's a reality here. Special needs children, children with heart defects, children with all sorts of medical problems.

I know I am blessed because four of my five children are still with me (my first pregnancy ended in a miscarriage, so I have one angel). And I have never lost a child who I had the chance to feel, hold, love, however long a life. A good friend of my sister's recently lost her baby less than an hour after birth. I have been keeping up with her blog and her loss overwhelms me as well. Overwhelms me with sorrow for parents in mourning and fills me with guilt that I have four living children when some people do not. I have always been a believer that God has a plan. But I can still question, at times, what could that plan possibly be? Why are these children taken away from their parents? I wish for just one moment that the snow would finally stop swirling to allow us a quick glimpse of the full picture.