Talking about speech therapy

Speech Therapy means another therapy to add to the appointments and stuff that Nick is doing. But this is good, and it's not so much about Nickolas, right now it's mom and dad classes and a play group where we get to practice!

We had our speech assessment the beginning of the month, Nick remained completely silent through the whole thing! But he is starting to chatter a little bit. Just no actual words yet. But I think that mama and dada are going to come soon. He is making those sounds when he is really angry and babbling in his crib at night.
I asked, but it doesn't count.

I even caught Katheryn trying to get Nick to talk. I could hear her yelling in the van the other day. When I opened up the door she is saying to Nick - "Say Daddy, Say DADDY! DADDY" He of course just smiled and laughed at her.
Dadda is his favorite sounding word to say. In the middle of the night when he wakes up and is very upset that he is awake it is dadadadada that he's saying in his VERY unhappy voice! But I don't actually think he is calling us - yet.

I made sure to ask for a copy of his assessment when we left - something that I have to keep reminding myself! (So that I have records for everything, instead of them being all over the place).
I received it this year.
Pretty much what we expected.
I really, really hate hearing that he is delayed in everything. But like mobility, language is pretty obvious and it's obvious that by 15 months (wow - are we there already!) he should have a word or 2.
So bad news is that he is severely delayed in his expressive language (using language) - well duh! He has no words. But in reading the report it said that he is showing some 'scattered communication skills' in the 12-15 month range. So that is good.

That's another reason why getting the report is helpful, I can go back and read this stuff instead of just remember that she said something about some talking stuff, but I can't remember. And the words severely delayed just repeating over and over. Because he is showing improvement - that's all I ask.

But his other stuff - his understanding and pre-language is there and in the appropriate range. So he understands what we say, what we want him to do ect.

Have I mentioned that I hate these assessments. They make me feel so dumb.

When I'm asked a really simple question like 'does he point to action words in books?' What?! I have no idea. Oops, he's supposed to be doing that?

But we have a plan. Kyle and I have some workshops to go to this month. We have a parent session where we learn all kinds of different things to do, and the a couple of parent and baby sessions where we practice. And reassess in 4-6 months.

A plan is good. Lets us feel like we are doing something.

I got a picture book for Nick to look through - full of HIM! He seems to be enjoying it!

This is just the first of what is Nick doing posts - more to come - I promise!

Spina Bifida in the News

Spina bifida is on the lips of many newscasters across the US and Canada. I was excited and taped one of the news reports (and accidentally slept through the other - oops). Reporting on the results of the MOMS research study done in the United States.
It is also all over our blogging world as well. Many of the moms I follow participated in the MOMS study.

The result of the MOMS study is complete and published. This is a study that was done in the States. It compares doing surgery to repair the back either before or after the baby was born. Prenatal versus postnatal surgery.
I did look into the surgery when I was pregnant with Nickolas. This was a research study, where parents who were eligible were randomly assigned to the prenatal or postnatal surgery group. The prenatal surgery group had surgery at (I think 24-26 weeks), while the baby was in the uterus! It really blows my mind.
Closing the back in a teeny, tiny 24 week fetus. Then closing mom back up and continuing with the pregnancy.
It is actually during this surgery that this photo came from.

The other group is the postnatal group. These moms (who were randomly assigned) had the initial testing for the group and then returned at 38 weeks for a scheduled c-section - just like Nickolas.

So I went into watching these news articles knowing the study was completed early (apparently ignoring the fact that it ran twice as long as anticipated). AND that it was declared a complete success and now fetal surgery is being offered separate from the trial.
Amazing. But at the same time a little saddening.

Saddening because all of this news, all of this excitement about the surgery, isn't going to help Nickolas. Isn't going to help any of the kids that are born. But I think that is just me being a little self-absorbed. This is GREAT for future parents who get a diagnosis. I wonder what it will do to doctors who recommend termination for a fetus that could have surgery?

That being said, this surgery IS NOT A CURE. It is never meant to be a cure. It was meant to see the impact on the various complications from spina bifida. Specifically hydrocephalus, and chiari malformation.

Then why does many of the news reports discuss how spina bifida causes walking difficulties, brain damage and mental disability.
http://www.msnbc.msn.com/id/21134540/vp/41499228#41499228

Wait a sec. Back that up!
So this is how the post surgical group is portrayed? Can't walk, brain damaged and having mental problems. What is this horrible thing called spina bifida?
I think that this kind of portrayal is negative,  perhaps we don't want spina bifida in the news - at least not like this.
I suppose (gruginly) that chiari and hydrocephalus could be considered brain damage - but that is certainly not how I see it.

The Canadian News was much more gentle. CTV news reported:
http://www.ctv.ca/CTVNews/Health/20110209/spina-bifida-surgery-110209/

I did think about the surgery when I was pregnant. One part of me wishes that we could have participated. Hey what mom wouldn't wish we had participated when it has been a great success. That being said I was not going to be able to leave work and Katheryn for the 15 weeks I'd have to live in the States, or the money to do so.

As well I didn't even qualify. For one I wasn't a US resident, but even if I was, I had a previous c-section which automatically disqualified us. As well, Nickolas did not have hydrocephalus before he was born (which I had thought was needed - but looking at the research wasn't needed). That is what I keep telling myself. But I know we did the right decision, just sometimes, in the middle of the night that thought 'did you do everything humanly possible' creeps in. My rational mind knows that yes I did.

Because this is my blog I thought I'd just write my thoughts upon reading the research myself. I think it might be a little dry - so feel free to just skip to the Comments section.

Looking at the results (and coming from the perspective of a L&D nurse) I can't help noticing the impact on the uterus. 1/3 of the women had a weak scar from their surgery - and 8 women had their uterine dehiscence (or start to come apart). It gives me shivers just thinking about it.

So it is not risk free. This affects this mother, this pregnancy and subsequent pregnancies with multiple scars on the uterus. It is not something to take lightly (Not that ANY of the women who participated took this surgery lightly).

As well from the L&D eye: premature labour, premature water breaking were significant. Not only are these kids going to be born with spina bifida, but also risks of being premature.

How premature? 13% were born under 30 weeks. Under 30 weeks! Preemie-premature. 33% were born under 34 weeks (before lungs are mature). Another 33% were at the later premature phase and only 16% were term. Compared to 85% of post-surgery babies who were term.

In the scheme of things I guess prematurity can be outgrown and nerve damage can't. But I've never had a premature baby.

So, those are the risks.

But what does surgery get you?

The need for a shunt was decreased (but not eliminated). Only 65% of the prenatal group met the criteria for a shunt placement - and only 40% had a shunt placed. (Not quite sure why there is a difference between needing a shunt and getting one - but maybe I'm not reading it right).

The postnatal group (like the general SB community - I think) had 92% had criteria and 82% had a shunt placed.

The Chiari - 96% postnatal group had Chiari malformation (again typical). But only 64% in the prenatal group! And these babies were more likely to be mild. The Chiari still worries me, but Nick's chiari is not symptomatic. The introduction of the article, which talks about herniation of the hindbrain  - scary! Does not mention that this is often not symptomatic. I think leading to the media discussing brain damage and mental deficiency.

The second primary outcome does say that the mental development index and functional level (not sure why mental and motor was clumped together) was significantly better in the prenatal surgery group. Looking at the actual numbers of the mental development index - there wasn't a significant difference between the 2 groups.

About the functional level - yes there was a difference. 32% of the kids who had prenatal surgery functioned at 2 or more levels higher! I'm amazed. As well as more likely to not use assistance to walk.

NO difference in cognitive scores.

One final note. The discussion part of the article says that the surgery decreased the risk of death. I'm not quite sure where they got this. There were 4 perinatal (before brith) deaths, and 2 preshunt deaths (in the prenatal surgery). So I'm confused about how surgery decreases the risk of death. It also mentions the improved mental function scores. From what I read I don't know how they came to these 2 conclusions. But I know that I am sensitive to the possibility that spina bifida and hydrocephalus (with chiari thrown in for fun) can cause Nick to have a mental disability.

I do not mean to be negative about the article or in any way about the women and children who participated. I can only imagine how brave it is to be part of an experimental study where your child and yourself is put at risk (and/or benefit). It is a great thing for those who participated and those who planned and wrote about the study. It is an excellent study that opens to door to so many new possibilities. But I've studies so many research papers during my nursing school years, and I guess my mind still critically analyzes these papers.

Apparently I'm long winded today, and I thank you if you actually completed my whole 'review' of the study.

I promise tomorrow I'll have some long-awaited updates on Nickolas, and hopefully some pictures! I have a couple of half completed posts to spruce up!

Give Love

To my SB Mommies - I am sure you have read this a couple of times - thanks to Joanna and her beautiful writing. But this is for family and friends who haven't read this, who don't know who I'm talking about when we think about Shea.

It's a reminder that everyone needs love.
So Joanna, take it away!

Because it's February.

Because I just decorated my house in pink and red hearts.

Because Valentines are not just for couples...but friends, mommies, daddies, siblings, classmates and neighbors.

Because everybody needs love. And not the romantic comedy, butterflies in your stomach, plucking petals off daisies kind of love.

They need the "I'm yours forever" kind of love.

The "we can do this together" kind of love.

The "can't stop starring at you" kind of love.

The "I'm always there for you" kind of love.

 

The "I can't keep myself from smiling around you" kind of love.

The "I promise to make time to laugh with you" kind of love.

The "everything you say is so important to me" kind of love.

The " I couldn't be prouder of you in this moment" kind of love.

The love that lifts you up....

Squeezes you tight...

Makes even hard times feel alright..

The love that teaches you all that you need to know...

And gives you support you need to grow...

The undeniable you were made for me...

And together we make a family...

What's mine is yours...

I treasure each kiss...

And everyone deserves to feel like this...

Kind of Love.

Because real love is something that cannot be bought - only shared. We need it from the time we are born - and those of us who having loving families know that NOTHING could have replaced that. The love of family - the love I was given as a child - made me who I am today. It teaches us how to love the rest of our lives. It can never be truly expressed in the form of greeting cards, chocolates, flowers, or jewelry. Those sweet tokens and gestures give momentary happiness - it's the feeling love behind them that really means anything at all. So with that in mind, and in the spirit of this holiday of love - I would like to propose the perfect gift for your loved ones.

Give the gift of Love itself.

Give Love.

You can bring joy and love not only to those who hold your heart -

but to child who needs your help.

Give Love.

 By helping one little boy come home to the family who is waiting to give him this kind of love. The kind of love every single one of these children pictured above are given every day.

The kind of love so many of us are blessed to have.

The kind of love he deserves.

Give Love.

 

Shea's story is a remarkable one - and it is only just beginning. For those who don't know - and didn't read about Shea in December - he has spina bifida and hydrocephalus, was born in an Easter Eurpean contry and is put up for adoption. He is fast approaching the age of 4, where he will be put in a mental institution for the rest of his life. He now has a family ready for him - and Shea is WAITING to come home. His family is actively completing the adoption process - eager to give Shea the love, support and care only a family can give. The only thing we can do to help them bring Shea home as soon as possible is to GIVE.

Give what you have.

$5, $25, $50

It's not the size of the gift, but the size of the heart behind it.

GIVE LOVE.

It is so costly to adopt internationally - so much so that many people say "we can't afford that" or "it's just not possible for us". But this family has given everything they have not once, not twice, but 3 TIMES (read their blog - they are an amazing family)and is making that leap of faith to make Shea a part of their family - but they need help raising the last bits.

(And in adoption language, "bits" = $9,000!)

They need our HELP!

As a friend so honestly reminded me "Let's face it ... we all spend/waste $$$ on this every year. The chocolate is gone...the flowers die... and all you have is a distant memory of the token(s) you invested in."

 How much more meaningful - how much more noble - how much more true to what love is all about - to give that money instead to this family - to this little boy -

to bring him home - to give him Love.

So help share the love...with Shea. :)

  

Isn't that the most adorable Valentine ever?!

It's message is simple - it's purpose sincere.

Make a donation (even just $5!) in the name of a friend or loved one - to Shea's Adoption Grant (through the chipin on the right hand margin of the Saving Shea blog) or visit his family's blog and donate through their chipin (it all goes to his account.) Then print out these adorable Shea Valentines and give them to your sweetie, your sister, your mother, your friend - and see their faces light up at the sweet face on the card.

 I can't think of a sweeter, kinder,

more beautiful way to Give Love.

Can you?

(visit http://www.savingshea.blogspot.com/ to read more about Shea's story as well as to view/print these Valentines.)



Thank you Joanna for those beautiful words. I hope they inspired someone out there to really think about what love means this Valentines.

No Day like a Snow Day

So I'm a bit late posting this. This was our weekend a week ago, when we decided that we had stayed in the house too long, and would go out and play in the snow. It had finally warmed up to a -5C.  So we headed off to play with cousin Madison!
Nick was less than impressed with being all bundled up in the snow.

The original plan was to go sledding, but the kids are still a little young for some hills. So we just pulled the kids around the backyard.

I got this perfect sled for Nick that has nice high sides, and a seatbelt. And because we've lost his snow pants, he is piled high with 3 blankets, 2 pairs of pants and lined splash pants. I think he has on Katheryn's pink, red and purple gloves, and the hat he hates,

We were outside, with the snow coming down. And Nick decided he had had enough, and the adults decided to agree with him! Katheryn isn't that happy anymore - but Madison (my niece) is still having a blast and hamming it up for the camera!

Now that everyone is all rosy cheeked and rosy nosed we headed inside to run around. Nick has decided to all of a sudden become a picky eater, boycotting any type of fruit or vegetable that isn't banana's decided that the plastic pineapple was still ok to chew on!

Don't know if I'm just asking for trouble writing about a snow day 24 hours before we are getting a snow storm.

We need to talk...

OK we really need to talk about some things. Trust is very important aspect of our relationship and I really feel that you have failed in that department. It is something that we both have to work on and I'm not sure if I'll be really happy until we reach that point in our relationship again.

First of all Kyle and I are great, so are the kids. So who am I 'talking' to? The shunt.

Don't call the men in the white coats to come and take me away... hee hee ha ha ... yet.
My other SB moms know what I'm talking about (I hope).

I feel a bit like I need to get over this. In the range of things that could happen (and will happen) a shunt revision is a walk in the park. (OK Maybe if that park is Regent Park at midnight!) But it just seems to have shaken me and what I thought I knew.

It was one thing I thought I had a handle on, one thing that I knew was there, but didn't really care. It was working, we'd had our year anniversary, we could breathe a little better. Hey I was even measuring his head only once a month! Now we are back to every day.

I guess I am just being naive that it's something I didn't have to worry about. Just one more thing I can stick my head in the sand about. Wow I'm full of metaphors today...
I am back to that gibbering mess where every little cry or sleep has me thinking SHUNT! OK I might be a little hard on myself here. But that is certainly what it is feeling like now. I feel like every day I'm thinking how spina bifida sucks, all my posts have been complaining and negative. Where is the positive?! Where is the hope and dream and this is not that bad! I guess it's there somewhere.

(FYI I put him there - he's not in the pulling up stage yet)

And I'm just not sure how to get past this. I guess time will tell. But what will happen in another 13 months? what will happen in 2 years (apparently the average age of a shunt)? Is there ever a time I can stop worrying about the shunt?! Worry about when it is going to fail us again. Stop trusting it!

So in honor of promoting a trusting relationship I am thinking of names. No I am not crazy. Men can name their ... um ... peter's (or at least tv says they can). So why can't I name Nick's shunt?
Except I am totally overthinking this! I have a couple of names in my head, but not 100% sure on them. It's not like it's something I have to imagine myself yelling "X time for dinner!"
What I've been thinking - considering this is shunt #2, is some B names. But I'm pretty boring, so I have Bob, Bert and Brian. I can totally imagine myself saying/thinking "Oh that Bert, is he acting up again?"
I'll say it again. I'm not crazy.