Heat Wave

First, most of you know that Mairead had an MRI at Children's today. Her neurologist ordered it as a follow up to the MRI she had as a newborn, and we are all hoping that it will show a healthy and developing brain, as well as provide some insight into how to proceed with her care. It's over, which is the best part. She did amazingly well. The only part that was really hard was when they had to put in the IV- it took 5 adults to hold her distract her, get the IV in, etc. They did put lidocane over the site for the iv about 15 minutes prior, so the needle didn't hurt, but she HATES being held down, and she is afraid of doctors, hospitals, etc. She had nembitol (sp?) which is a barbituate. I guess there was some discussion between the anesthesiolgist, NP, and nurse anesthetist about which med to use to sedate her because of her history. People get nervous when you tell them your baby had a stroke for no apparent reason. So, they went with the barbituate because she has had them in the past and tolerated them.

It was heartbreaking. She kept saying, "no thank you- please- no thank you." She finally yelled, "Stop it!" She never says that and has trouble expressing herself, so it was great to hear her stick up for herself. But, to know how much distress she must have been under to muster up the words was like a knife in the gut. It was really, really, hard to see her so afraid and so betrayed.

She did well with the sedation and slept for a long time this mid-day. I just hope it was all worth it and we get some answers. I don't know when her neurologist will read it but I will be calling tomorrow to grease the wheels on that. They did give us a copy of the scan on disk. I can see the images and I don't see the clot that was visible on her MRI as a newborn, but obviously I have no idea how to interpret any of it.


She was annoyed when she woke up because she wanted the blankets over her head and the nurse was trying to uncover her face. Once I told the nurse that she likes to be totally under the covers, she settled back down and did really well coming out of it.

I asked, "Do you want to go home?" And she yelled, "NO!" which I was surprised about, but then pointed to the bed and said, "Blanket, pillow, sleep." Basically, leave me alone and let me sleep!

Thanks for all of your thoughts, prayers, and concerns. She is now just lying around watching tv since she can't stand up or walk yet. She is so freakin' funny and sweet. She had her eyes half open and kept moving her arms saying, "bubbles, bubbles, splash, splash," like she was swimming. I went over and whispered "I love you" in her ear and she whispered back, "I love you." Then, she whispered it over and over, about 10 times, while smiling and giggling with her eyes closed. Adorable.

I lay down next to her and she made me close my eyes, then leaned over me and whispered, "I love you," like she was putting me to bed.

She seems to be using words in her drunken state that she doesn't normally use, too! She was sitting up and said, "I sitting up. I tired." She has never said either of those things.

She asked for a blanket and when I put it on her, she said, "It's nice." Never said that before either! Maybe she is just less inhibited and is not afraid to use new words. Or, the meds activated some little neuron in her brain and just fired off new words. The brain is absolutely fascinating.

So, now we wait for her neurologist to let us know what he thinks. Hopefully, he will let us know soon!

I think I mentioned that we were looking at preschools for Mairead and we have found one that we love. It is in Tewksbury and is about 5-7 minutes from us. I loved the director, the classrooms, the philosophy, everything. I explained to the director about the special needs that Mairead has and the extra help she might need in the classroom, and she was incredibly supportive. We will fill out the paperwork this week and get her enrolled. I am excited about this opportunity for her, but nervous about sending her to a 'regular' school with no SpEd teachers or accomodations, and I am a little sad that my 'baby' is not a baby anymore!

The past few days, we have been spending most of our time out at the pool because it has been SO hot! Right now, for example, the thermometer out at the pool reads 103 degrees. Yikes!

The kids have been LOVING it, especially since we get lots of visitors, and sometimes those visitors bring treats, like munchkins. Add that to sandboxes, water tables, and the pool, and life is good!

Mairead is our little fish. Even when she is so cold that she is literally turning blue, she says, "More swimming!" She absolutely loves it. She splashes around and yells, "Mom, Daddy, guess what? I swimming!"




Ben's favorite thing to do is to scoop water from the water table and dump it out wherever he sees fit.


Jack was very serious about moving this bucket. Probably just to get it away from Ben.

Jack

Ben. This is the life, huh?

It took a lot of effort to get these guys into the floats. They are either afraid of the water or just very sensitive to the cold temperatures of it because they really resisted going in. Once they got used to it, though, they seemed to have a pretty good time!

The whole family was here for the 4th on Sunday, and even Emmett and Bean cooled off in the pool. The kids loved that. It was great to have everyone together and spend time with our the aunts and uncles we love so much.

Jack needed a little alone time to relax, I guess.

Lily and her parents were here to enjoy the pool this weekend, too, so I had to get some adorable pictures of her... easy to do since she is just so cute and so very photogenic.

Think she likes her teething cookie?

Thanks for reading!