Thank you all for sharing in the lives of our three amazing children- Mairead, Jack, and Ben. We hope you visit often!

Saturday, March 13, 2010

12 Month Stats and a video

I did promise to upload more video of the boys' party, so here is just one of the kids dancing and having fun. It's kind of a chaotic clip with kids running in and out, but you can see some of their dance moves. Mairead is yelling, "C'mon everyone!" while spinning into everyone around her. They definitely had fun!

The boys had their 12 month visit to the doctor last week and she was very happy to see that they are doing well. She is pleased that they are growing bigger and stronger and she thinks they look great. They are still on the small side (25th percentile for height and weight), but healthy just the same.

Jack weighs 21lbs 5 oz and is 28 1/2 inches tall. Ben is the exact same height, but weighs 12 oz more at 22lbs even.

She did recommend that we have a cardiologist follow up on Ben's heart murmur, but she is confident it is nothing to worry about. We will go to Children's Hospital for that on April 1.

Speaking of Children's, we did finally get an appointment for Mairead, but it is not until June 1. The specialist she needs to see has quite the waiting list, so we will just have to be patient. She will start receiving different services through Early Intervention this week, so we are looking forward to helping her that way.

Thanks to all of you who have posted words of encouragement here on the blog or who have sent us encouraging emails. We truly appreciate the support you provide for us and our little girl. And Jack and Ben, too!

Wednesday, March 10, 2010

It's the Little Things

With all that we have going on with Mairead right now (not to mention PT for the boys and the challenges of raising three kids under three), it's important to focus on all that we have to be thankful for every day. It's the little things in life that are important, and we have three little things in particular who are very important to us!

The past few days have actually been warm enough to enjoy going outside! Dave and I have piled the kids into the stroller and gone for a few walks, and Jack and Ben had their first taste of exploring the oustide world on their own. Last time it was warm enough to go out, they were too little to crawl around.

Now, they can do fun things like play with sticks.

They were a little confused as to where we were or what we were doing out in the yard, but they liked exploring the new territory.

Jack kept looking back at us as if to be sure we were really going to let him play with all of the sticks he kept finding.

Both boys raced to Grampy for a little fun.

Nana, the athlete of the family, showed Mairead how to shoot some hoops.

Since I am NEVER in pictures or on the blog, I thought I'd show you that I cut about 6 inches off my hair last week. I almost backed out at the last second but I needed a change and I am really happy with it. Forgive me for how tired I look- this was the day of Mairead's evaluation and it was a long one for me.

Inside the house, the kids find all kind of mischief to get into. The boys love tv remotes, the batteries in tv remotes, electrical cords, the vacuum, anything in the recycling bin, and the cats.
The other day, they found a new use for their walkers.

Mairead thinks it's fun to take a rest in Lily's crib (wee's crib, she calls it).

One cat, Molly, is very patient and seems to enjoy having the boys pet her.

Their favorite thing to do is to pull EVERY diaper and wipe from the changing table. I guess Ben got tired of waiting for someone to change him, because he looks like he is about to do it himself.
Pants on the ground... pants on the ground...
Mairead had fun playing in the sink while Nana cleaned the bathrooms.
We haven't been as crafty lately, but here are our latest two creations. She liked these. I made the roof, door and windows, etc for the house, but she glued all of the parts onto the paper.
She REALLY liked this one. We did it last week and when I brought out the construction paper today, she said, "Ice cream?", so we did another one today.
I do realize just how lucky I am to be home with the kids and to be watching them grow. They are all doing such fun stuff. For example, if you ask Jack if he has a bad cough, he will reply with a little fake cough! I need to get video of that. Ben loves remotes and will seek them out. Once he finds one, he will frantically wave it at the tv and press buttons to see if anything will happen. Both boys start dancing when they hear music. Ben is standing unassisted and is not too far from walking. Jack's PT is definitely helping him get stronger and he is cruising really well.
Mairead is saying new words and phrases all the time, which is fantastic. Today, my mom started to count and said "One," and Mairead jumped in with "dos, tres!" I think we have watched Dora about 5 times in her entire life, so I am not sure where the heck that came from, but I thought it was pretty cool! She understands that 'One, two, three" means the same as "uno, dos, tres," so I know that her little brain is working overtime, and hopefully the therapies she will receive will help her to let all of that information out.
Thanks for checking in!

Tuesday, March 9, 2010

Concerns about Mairead

I hate to follow such a happy and fun post as the boys' birthday with one that is so serious in nature, but I know we have been a little out of touch lately, and I wanted to let you know what is going on with us. We have been increasingly concerned about Mairead's development, and have been trying to figure out what is going on with her. For a long time, we thought that she was doing fine after the stroke, but now, it appears that she is not fine in terms of her development. She is very much delayed, to the point where we had a conversation with her doctor about Autism. You can't even imagine how heartbreaking it is to have that word even mentioned in regards to your kid- it is so, so, scary. Then, the alternative is that she doesn't have autism, just brain damage from the stroke. Not a great choice. We have not said much about it because we wanted to wait until we talked to her doctor and she was evaluated by Early Intervention, but we have had concerns for a while and are now trying to adjust to the special needs that she has, as well as to get services in place for her.

The doctor and EI do not think that Autism is what is going on, but we can't rule anything out at this point because neo-natal stroke is very much under-researched, and every victim shows different results. Most, however, have delays in comprehension, speech, and motor skills, as well as a very high tendency for learning disabilities and other problems. Also, what limited research there is about neo-natal stroke indicates that the deficits are more and more significant as the child approaches school age. The reason that she seemed ‘fine’ for so long is because her brain was doing ‘simpler’ tasks. Now that she should be processing and synthesizing more complex concepts and information, her brain is not keeping up.

Right now, we are on a waiting list to see a pediatric stroke specialist at Children's Hospital. We have had her evaluated by Early Intervention and the results were somewhat disheartening. This is long and involved, but here is what they said--

She does qualify for services and she was so good during the evaluation. She did some things I honestly did not expect her to do, and she was very cooperative. She came out 'lower' in some areas than I wanted to hear, but there was nothing really surprising in what they told me.

Here is how she scored (her actual age is 31 mos)
Cognitive 19 mos (ouch- a full year behind in problem solving)
Fine Motor 25 mos
Gross Motor 26 mos
Receptive Language 19mos (again, ouch. This is what they think she understands)
Expressive Language 22 mos (this is how she expresses herself through language)
Social/Emotional 26 mos (eye contact, playing, smiling appropriately, reacting to others)

The people were really great and told me that she has a lot of strengths. Also, they reminded me that these tests don't truly give a picture of the whole kid. They told me that they could tell that she is smart. Her receptive language and cognitive scores were very low, but it is hard to know what she really understands since she has a hard time communicating to us. There are some times that we think she DOES know the answer to something, but she cannot communicate it to us.

The Speech and Language pathologist is anxious to hear what neurology says because she believes Mairead "sounds like a stroke victim." Lots of ‘carrier phrases' that she uses to compensate. For example, she knows 'help please,' so when she is stuck on something, she just uses 'help please,' not 'fix my toy, please' etc. She echoes certain phrases that she hears and uses them in appropriate situations, where she should be using unique phrases. I guess stroke victims do this as they re-learn language. They get a good grasp on many phrases that help them get what they need, and they use those phrases when they are at a loss for other words.

So, I teared up when she said that because as much as I don't want Mairead to have autism, how horrible and absurd is it that my 2 year old is a stroke victim? How awful that she is starting her life with having to compensate for something so bizarre and something she never had a chance against.

They did see a few of the things that can indicate autism, but her social skills counteract anything ASD related. And, that was not their focus. The speech therapist especially thought the stroke was the underlying factor we need to look at. They said she is 'all over the map,' and that you can't run down a checklist for Autism, Pervasive Developmental Delay (PDD), etc, and see her. Nothing about her is 'black and white.'

I am relieved that the eval is over and happy that she will receive services. She will go to an EI playgroup once a week (the same group she goes to now), and will see a Developmental Specialist, a Speech and Language Pathologist, and a Motor Therapist. These last three services are one-on-one and the therapists will come to our home. I am hopeful that these will help. I am hopeful they do not help too much before her 3rd birthday, because if she reaches 3 and still needs services, she can go to public pre-school and get services there.

I am sad to see it on paper that my little girl is nowhere near where she should be. I hate that it is obvious to me (and to others) that she is smart, but that she has to cope instead of just 'be.' I know that her ability to cope shows intelligence, but I don't want my baby to 'cope' through life. I want her to just live it, like any other kid. I hate that her little brain is damaged and she is already fighting just to be 'normal.' Children with cognitive problems or learning disabilities can cope better if they have natural intelligence, and it seems that is the case with Mairead, so at least she is finding ways to work around some of the problems that she has in communicating.

What's really hard is that we STILL don't have an appt at the stroke clinic. I do understand that there are many kids who need attention and we do want her to see the best doctors that she can, so I can be a little bit patient…but not much. Hopefully we will have more information about that by the end of this week.

Thanks for reading all of this and for your support. I am happy that it is done and that she can finally start getting what she needs. But I am so sad that she is so far from where she needs to be, and that she has to fight an uphill battle against something that never should have happened to a baby, and that has no explanation.

As you can imagine, all of this is very hard on me, on Dave, and on our family. She was doing so well for so long that we were sort of lulled into a false sense of security, and now we are so frustrated and saddened by the seriousness of her situation. We want to be able to make things ‘all better’ for her, but we know there is no magic potion for that. A stroke is a very serious and life threatening event, and we know how lucky we are to even have her with us. We try to focus on the positive, but the uncertainty of the future is very scary, and I am heartbroken that she has so much to overcome. We are lucky to have such great family and friends who are supporting us, and who have been doing that since the day she was born.

I wanted you all to know what is going on with us, and to know when you see her that she is not really functioning like other kids her age. She has some fantastic strengths and has so many ways to show us her intelligence. We think she is amazing and smart and beautiful, and we want everyone in her life to see her that way, too.

Thanks, everyone. Please do check out the previous post to see how much we DO have to celebrate in our lives.

Monday, March 8, 2010

Happy Birthday! Happy Birthday!

On Saturday, we celebrated two very special birthdays- Jack and Ben turned 1! It's hard to believe that a year has passed since we welcomed these two little guys into the world. We had a great day with friends and family and we are so thankful to everyone who shared the day with us. The kids had a great time, too!

At lunch time, Nana let Jack and Ben lick the frosting off of the beaters from the mixer. That was pretty exciting!

Of course, we made sure there was one for big sis, too.

The boys looked adorable in their birthday bibs from Jim and Jessica.

I made the cakes, my mom frosted them, and Katie did the decorating.

One for each, of course!

Katie also made cookies in the shapes of a J, a B, and a 1. There was also a special 'M' cookie.

The boys dove into the cakes.

Jack liked it so much that he stole some of Ben's!

Enjoying Katie's cookie creations...

A hug from Jen was a nice break from the festivities.

I do have some video of the kids dancing, but I have to take some time to upload it-- that will come in a separate post.
I did upload this one the boys enjoying their cakes.
Everyone was so generous with their time and the gifts they brought for the boys and for Mairead. We really had a great day and it was nice to see everyone on a nice afternoon!
Today, we went to the pediatrician for their 12 month appointment and it went very well. They are still on the smaller side (about 25th percentile) at 21lbs 5oz for Jack and 22lbs even for Ben. Each boy is 28 1/2 inches tall. The doctor would like us to have a cardiologist check out Ben's heart murmur, but she is confident that it will turn out to be harmless.
I will definitely upload a few video clips soon and let you know about some other things going on with us. Thanks for checking in!!!