Summer Fun with Grad School Friends

While I was in grad school, I was lucky enough to meet some amazing women, and we have stayed friends since school ended, through weddings, moves, new houses, children, new jobs, and more children. There are 5 of us, and when we met, two of us were married and only one had a child. Now, all of us are married and there are NINE children between us, all under the age of 6!

We try to get together whenever our friend, Megan, is in town since she lives far away and is always traveling. So, we met up yesterday at Caitlin's house for a fun, but hot, playdate! The only one missing was Lisa-- she had just returned from her honeymoon!

Mairead and Will loved running through the backyard- especially up and down the hill. Will's mom's name is Megan and our kids are only 3 weeks apart, so we have a lot in common. Also, she went to Stonehill, too!


Will, Mairead, and Dommie (Domenic) enjoying the treats that Caitlin made-- s'mores on sticks!



It is not easy to wrangle 9 very young children... mostly, it is not easy to wrangle MY very young children. Mairead was very cooperative, but very loud, sitting on the couch yelling, CHEESE! at the top of her lungs. Ainsley and Dom (the oldest of the group at 5 and 3) were good examples, and Will did a great job holding his 3 mos old baby sister, Kylie. Isabella (6mos) and Brielle (11mos) were perfect subjects, too!

And then there are the twins.... you can see Ben's head over the top of the couch while I try to corral Jack.



They are at least IN this picture, but only because they were trying to climb on the couch to get at the babies.

I guess this is as good as it gets for a group of this size and age, but it's still a whole lot of cute kids in one picture! I love this one because Isabella (far left) has the BEST smile on her face, Dom is snuggling up to his sister, Mairead is yelling, "Cheese," Brielle is very curiously looking at Will and Kylie, and my boys are trying to grab at Kylie's feet.

Outside, the boys gravitated toward the sandbox.

Can you see Jack's curls here? I don't want to cut the boys' hair in case they have very cute curls!

So serious!

My boys and Brielle. She is 5 mos younger than my guys, but she is a big girl and has no fear, so she jumped right in with the 'big kids.'

Oh, Ben.

I did manage to get a quick video of the kids and their favorite activity of the day- running up and down the hill in Caitlin's yard. There were a million toys, a kiddie pool, a water table, a sandbox, and a swingset, but just plain running was the most fun!

We had a really great time! Thanks to Caitlin for hosting and for everyone making the effort to be there so we could all get together. And, thanks to all the moms for helping me to chase kids around all afternoon! They are ALWAYS running in three different directions and when it's 90 degrees, it is REALLY hard for me to keep up!

Unrelated cute story- Dave hung up a framed print of Carlton Fisk waving the ball fair and Mairead pointed to it and said, "Daddy, it's a picture of you." Dave will take that as a compliment! How cute is that? AND she used a whole sentence, too!

Still no MRI results. I am beyond frustrated. I know the doctor she sees is supposed to be the best for pediatric stroke victims, he's a genius, etc, etc, but I would settle for 3rd or 4th best, or even 10th, if he just called me back in a more timely fashion. I will be stalking, um, calling, his office on Monday. And Tuesday. And Wednesday...

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!

An Escapee, and trying to beat the heat

I was at Target yesterday (of course) and Dave texted me with, "Guess who can get out of the crib?" Yep, Ben went overboard during nap time yesterday. He is ok, but he was pretty scared-- so was I! Mairead is still in a crib at almost 3 years old and has never tried to escape. 15 months, and Ben hit the deck. Dave was listening on the monitor when he heard a loud 'thump,' so he ran upstairs to find Ben toddling toward him with a very scared look on his face. We are lucky that he wasn't hurt-- I really can't believe he did it. I mean, I knew he would do it, I just didn't think he would do it at this age!

Dave took the boys out immediately after naps to invest in a crib tent for the little devil. Dave has been great about caring for the kids, taking them for walks, and taking them on little outings. I love having him home with us! The kids definitely do, too. The only problem is that now the twins have realized that we could go someplace if we wanted, so they are constantly pointing out the windows or turning the doorknob saying, "more bye-bye, go bye bye," in hopes of heading out.


Mairead had hippotherapy on Wednesday and loved it. She really does well and even put her helmet away when she was done. What a good kid!

On Monday, it was 94 degrees, humid, and thunderstorms threatened all day... not a good weather forecast when you have three toddlers and no central air. So, we planned a little trip to the mall. We had lunch there, walked around, looked at the animals in the pet store, and went to the indoor play area that they have. It's just a small little area with some climbing structures, tunnels, ect, and it is designed just for the little ones. They all loved it!

We did have one incident-- an adorable little girl about two years old ran over to Ben and hugged him with all her might. It looked more like she was tackling him and they both fell to the ground with her on top of him. He was scared, but he was ok. The little girl's mom told her to be gentle so she later came back and petted Ben on the head. I guess he is just irresistible.

We headed home just in time for naps (the kids have a/c in their bedrooms), so we were able to keep cool pretty much all day!

These are all cell-phone pictures so they are not that clear.

One last one of Mairead on the horse.

She has been making some amazing strides lately, not the least of which is being able to say, "I love you" in return when we say it to her at night. I can't tell you how much this means to me-- we have been waiting a long time for those three little words!

She is also asking more specifically for what she wants, and letting us know if she is hungry or cold- this is new for her. If we ask, "Who lives in the purple house?" she can tell us. Her therapists have commented that lately some things just seem to be clicking for her, which is awesome. I just wish that all of these amazing services did not have to end when she turns 3.

The boys are doing really well, too. They are saying new words and trying to color and do puzzles. They are also into climbing. Everything. All the time. It's a good thing Dave is home because we have to be super vigilant with them. I know everyone says it, but right now, they really ARE double trouble!

Summer is Here!

Summer officially began for us this past weekend. Dave is home with us on school vacation and I can't tell you how great that is. The kids love having him home, and so do I! Mairead will sometimes grab Dave's hand and mine and say, "Mom! Daddy!" She seems to know that it is special for him to be home so much.



Just because it's summer doesn't mean that we are slowing down at all. We actually added swim lessons for the boys this week. We can't take pictures because Dave and I are both in the pool, but it's just as well because they HATED it, especially the first day. They are starting to come around but we have just one day left. I hope they warm up to it because we plan to spend a lot of time at the pool this summer!



While Dave and I took the twins to lessons, Christin really helped us out by babysitting Mairead. She even took her swimming one day and then to a playdate with Ailish. Christin has been a HUGE help this week- thanks, Christin!

One reason the boys may not have enjoyed the pool so much is because they had nasty reactions to their MMR vaccines. They had fevers for 4-5 days and then broke out with a rash. Ben had the worst of it, looking like he had the measles from head to toe. They have been pretty cranky the past few days. The reaction coupled with the heat has made for some grouchy babies!

We did have a great Father's Day weekend before the fevers really got in our way. We spent a lot of time playing outside with the kids and enjoying the weather. Dave is such an amazing dad to our kids and they just love him to death. Mairead is especially cute with him. And, we are lucky enough to have a great Grampy right here in the house with us, and a Grandpa waiting for us in New York. We also think of Dave's dad on that day and wish he was here to see our family.

Even though it was Father's Day, the kids got a new present- Nana and Grampy gave them a sandbox that can actually fit all three of them!

We also keep up with their weirdness. Jack was holding this tupperware in his teeth and humming.

Ben, as we all know, loves to play in the recycling and found his way under the cabinet to the mother load of the recycling bin.

Hmmmm.... here's a nice piece of garbage...

Our bathing beauty dragged Daddy into the freezing cold pool several times. He must love her very much.

She did sit in the kiddie pool a bit, but now demands "rectangle pool, no circle pool." Now that she has had a taste of the big time, there is no going back.

Dave and Jack had some quality time together.

The boys have been practicing learning to feed themselves. I'm still not quite sure how much goes in their mouths...

Ben

Jack

Mairead got her hands on Nana's glasses the other day. I actually think she looks a lot like me, here. Plus, I often wear my glasses upside down and have cookie on my chin.

A fun Father's Day activity was this new tee-ball set. Daddy taught Mairead how to use it. Mostly, she wanted Dave to hit the ball far, and she would yell, 'Yay, great job!"

I hope that everyone is enjoying the summer as much as we are!

Mairead updates

I promise to share some twin updates and pictures soon, but I just had to share this because Mairead is in the other room right now having her developmental therapy session, and she is doing some AWESOME stuff today! Abstract concepts are really hard for her, as is answering direct questions. Mary, the therapist, asked Mairead, "Does the airplane go in the sky or on the ground." The wheels started turning and Mairead took a few moments and blurted out, "in the sky!" This seems simple to some, but for her, this is great! She is learning to process things much more easily, which is such great news.

The other day, I took her out to run some errands and on the way home, we drove by some waterfalls. She said, "Mom, I see waterfall." Again, huge. Then, she said, "It's beautiful." I literally started to cry because of that simple statement. Because, it's not so simple for her, and to know that she is enjoying and appreciating the beautiful world around her is just about the best feeling I could have.


She is also really stepping up her coloring and drawing skills. She did this one today with Mary. When she colored the little blanket (in red) on the elephant's back, Mary said that was 'kindergarten level' coloring. Maybe we have an artist on our hands...

And, this is the face she drew completely on her own yesterday. She says each part when she draws, "circle, eyes, nose, mouth, ears, and hair." So cute!

In medical news, we have a date for the MRI. I spoke with the neurologist at 3:30pm one day last week, and radiology called the next morning at 8:30 to get things going. I was impressed! I answered some questions and they told me that a nurse would call within 48 hours. She called an hour later, asked more in depth questions, and told me that scheduling would call in 2-3 days. They called 5 hours after that. About time things started moving quickly!!!

Anyway, it will be at 7:15 am (ugh) on Jully 7. That is actually not bad... I was expecting to wait longer. She can have it done at a sattelite location so we don't have to trek into Boston, which is nice.

I am already freaking out about it. About the actual MRI, the sedation, etc, about the results, everything. There really is no good result. Either they see something wrong in her brain (good because it explains things and may help with preschool, but bad because, hello, something is wrong with her brain) or they don't see anything (good because her brain is ok, bad because we are back to sqaure 1 with what is wrong). Please keep us in your thoughts on that day. I hate to have her sedated, but there is no other way to do it. And, at least she won't be scared while having the MRI- those things are scary!

I have to say again how much I love Mairead's team from Early Intervention. All of ther therapists were here yesterday after coming to the house for a meeting about where to go from here. They are awesome- this is not a typical or required step when a child is about to turn 3, but they were so disappointed with the IEP results and so interested in what her upcoming MRI will say, and, of course, so concerned about our little girl that they thought we should all meet to figure out our next steps. THEY suggested the meeting because they want so badly to do something to help us.

They are each going to write summaries that illustrate their concerns about M and their feelings about why she needs preschool, and these summaries will go to the neurologist (who has offered to try to help with the preschool issue) and with me to mediation when I appeal her IEP.

They offered suggestions for how to best appeal the IEP, and brought materials and ideas for private therapies, learning centers, preschools, speech pathologists, etc, so that we have resources after she is discharged from EI.

They are awesome. They truly care about her and they make me feel so much better becaue they can see what I see. They can see that she WILL test well but that all of the gray areas are where she needs help. They can see that she is bright, but that she still needs so much help. They see all of her strengths and how great she is, but they also see why she is deserving of services and how much she could benefit from them.

I wish she could go to Early Intervention forever. Seriously. I love them. But, the law says that children can only go until their third birthday. I am going to be SO sad on her last day of school and at her last sessions with each therapist. They have done so much to help us and she loves them. We are truly going to miss having them in our lives. I am trying to be positive and focus on the fact that we have the month of August 'off,' with no therapies, etc. We have a couple of family vacations planned for that month, so it will be nice to just have fun with our kids.

Heard from the neurologist

After stalking, I mean, politely making repeated phone calls to the neurologist's office, I finally have an update. It's not much, but it's a place to start.

He didn't have a lot to offer except that he does concur with the original neurologist about her having an ischemic attack with diffusions in the white matter. Bascially, a stroke. Yeah, I know, thanks. I talked to him about her delays, etc, and where to go from here, and he is going to schedule an MRI and recommends that we have her tested by a neuro-psychologist. I told him about the IEP mtg and what the school said, and he said, "I am shocked by that. I mean, what do they want?" He was truly puzzled that they would not offer her a spot in a pre-school. He asked me to have EI write a summary of their concerns and then forward that to him so that he can look at it and try to be of some help to us.

So, I am happy that we are moving forward with a new MRI. I mean, who knows what her brain looks like now? After we do that, maybe he will have more insight into what is going on with her and why she has such varying skills and challenges.

I am glad he gave the suggestion of the neuro-psychologist, too, since a few people (some of you included) mentioned that as an option. He also recommended a test that he would ask the schools to do, and encouraged us to seek an Independent Educational Evaluation (all things I was already going to do, but it helped a lot to hear him say all of the things I was already thinking of).

I feel better, I guess, because I at least feel like he wants to help us and that SOMETHING is going to get done (MRI, neuro-psych, etc).

I am looking at options within school dept to find out how to get her re-evaluated. I'm not sure how things will go there since today was the last day of school, and many staff members do not work over the summer.

So, that's where we stand, I guess. I will probably try to find a developmental pediatrician and at least get on a wait list or whatever so that I have that option down the road.

I have to say that I have been SO overwhelmed with the support everyone has offered. We have heard from so many of you with ideas, suggestions, thoughts, prayers, or whatever you could offer. It really does help us to deal with all of this. I also love that we have so many friends and family members who just refuse to take 'no' for an answer! I guess no one ever told any of you that 'you can't fight city hall...'.

In other news, we had to skip swimming tonight because Mairead has a mild ear infection. This is only the second one she has ever had, and it is pretty mild. We just didn't want to make things worse by taking her swimming today. From the looks of the weather report, she should have plenty of chances to swim this weekend, anyway!

We did get to the playground today since no one had therapy and we did not have to save our energy for swimming. We usually go on Fridays, but this Friday is supposed to be 87 degrees, and that is a bit too hot for the playground!

These pictures were taken with my cell phone so they are not that great. The first one shows a new trick that Mairead learned from a certain aunt of hers... hmmm... who could that be? Drinking out of the hose is a new talent that she has.


Jack and Ben are happy to share in the sandbox (Ben is in blue)...


Or on the swings (Ben in blue again)! They are just the right size to fit in the swing together. It is pretty damn cute, I have to say. Also, they get a little nervous on the swing alone, especially Jack, but he loved being in there with Ben!


The boys are doing really well. Jack is saying SO many words! Yesterday, he started saying, "Me down" when he is all finished eating. He is walking pretty much all the time now, which is great. Ben is just about the strongest 15 mos old ever, and has amazing balance. He can climb pretty much anything (not my favorite skill of his) and has excellent control on any kind of surface.

Our walk yesterday was just about the best thing ever because a garbage truck drove right next to us while picking up the recycling. AND, the man beeped the horn and waved at us. Jack just kept pointing and saying, "I see car, I see car." Ben was waving and yelling, "Vrmmm, vrmm," and Mairead very clearly said, "a garbage truck." Yep, pretty exciting stuff!