diagnosis: the journey begins

Hi all! It took me a while to get this posted b/c there is a lot of info so hope you're comfy b/c this is a long one. (side note: i have listed some interesting links/blogs on this page so when you have time & if you are interested, take a look)

Grayson had his evaluation with Dave Hammer, a renowed speech therapist(SLP) here in Pittsburgh, he is a nationally recognized leader in the evaluation & treatment of childhood apraxia of speech (CAS). He also coordinates research efforts at the hospital related to speech sound disorders in young children. He is just simply phenomenal! Anyway, he has given us a "working" diagnosis of childhood apraxia of speech. A "working" diagnosis means, they think this is what he has going on but because he is so young, their opinion/diagnosis may change in 6-9 months as he gets older.
Ok, so what is CAS? I talked about this briefly in another post but it is a neurologiacally based speech disorder that interferes w/ the child's ability to pronounce sounds, syllables & words. There is nothing wrong w/ the muscles themselves. The area of the brain that tells the muscles how to move & what to do is either damaged or not fully developed. He knows what he wants to say but can't say it when he tries. Either the wrong sound comes out or no sounds come out at all. This is involuntary & he has no control over it. No one really knows what causes it. This same problem in the brain can also cause problems with fine motor skills as well, which is why he is in OT as well.

So that is the clinical info. There is a TON of more information on the apraxia website: http://www.apraxia-kids.org/ if anyone has more questions. It is a great website. Now for the emotional side of things. Here is my pre-emptive warning: I am putting this out there not to ask for sympathy or pity, but because I am hoping this blog will make it's way to other families with similar issues and that they can find solace knowing they are not alone.

With that said, this has been a huge blow to all of us. I didn't know what outcome i was hoping for from the evaluation but i definitely wasn't expecting this wave of fear and emotions. I have been heartbroken since. I guess although i knew there was a good chance Gray had apraxia, deep down i was hoping he was just a late talker like Ryan. It breaks my heart that something that comes so natually for most other kids, Grayson has to struggle with all day, every day. It's not fair. He is the sweetest, kindest most amazing person, besides Ryan i have ever been blessed with in my life. The kindness, gentleness and just overall goodness that radiates from this little man is astounding. And yet, he has a rough road ahead of him. We all do. He just plain can't do things other kids his age can do. He can't catch a ball. He can't say "mama". He will have to work hard to do these things. Luckily, so far, he is willing & eager to try. We are all learning signs to help him communicate. And as if all this wasn't bad enough, poor Easton (who has his own issues, i will get to that in a minute) sometimes gets left out. Grayson requires so much attention (& not in a typical child wanting attention manner)that E doesn't get NEARLY as much attention as he should. He is the baby after all. I worry that he is going to have to be in special education when he gets to school & will have to deal with that stigma. Luckily, Gray started his speech therapy early and we caught this relatively early, in comparison to many other kids, so I am hopeful we will have things under control once he starts school. There are so many other things we need to be careful about, that you don't even think of until you are faced with them. Things that other parents don't have to worry about. Things like finding babysitters, teachers, etc. that can handle a non-verbal child. A (*gulp*) special needs child. When we go out in public, he can't yell for us or for help, or if he gets lost, can't tell people his name, etc. BUT, he really is so smart & so aware of everything that is going on. There is no doubt that he understands everything you're telling him and what is going on around him. Which is wonderful but also worrisome, because i don't know if it's a good ting or a bad thing if he understands what is going on with him. I think right now if anything he either doesn't know or just thinks his mouth/hands won't work. So, that's the hand God has dealt us & we just have to play it to the best of our ability.

Now, on to Easton. He has only seen his new OT twice, therapy 1 time. He will make some progress, then step back, then progess, then step back. I'm guessing that's somewhat typical. He has at least been taking solids at least once a day. We did stop thickening his bottles a couple weeks ago and he has been doing really good with that so far. That has helped with his constipation too (which would sometimes lead to his lack of appetite) which are all good things. I did introduce a sippy cup to him last week and though he doesn't do much with it, he grabs hold of it great & does bring it to his mouth. he mostly just chews on it, but again, all good things. he is getting over a sinus infection and at the same time, he is FINALLY getting 2 teeth. Yay!! He is sitting up by himself for long periods now and is soooo close to crawling. It'll be any day now and the wild child will be mobile, LOOK OUT! I am going to have to re-do all my baby proofing b/c Gray is so good, he just leaves most stuff alone. Not E, he is into EVERYTHING.

I never thought i'd be a mother to a special needs child, let alone 2. Let alone 2 this young and this close in age. As hard as it is at times, and BELIEVE you me, it gets HARD, each of the boys gets frustrated, we get frustrated, we're tired &/or hungry, impatient, i cry, the boys cry, what have you, i wouldn't trade it for the world. I have THE best family in the world. Besides, i've always welcomed a challenge. :-) Now I have to go find the critter running around in my walls...

Great week

So last Thursday was a GREAT day!
Grason had a awesome session with his speech therapist. He said over half a dozen words, and made a bunch of animal sounds! It doesn't sound like much, but it is a HUGE improvement.

Also, Grayson, the big boy, also on Thursday, we pee in the potty!! Yeah!! It was ony the one time but he is doing really well with that too. I think we are going to do a potty training boot camp type of thing this weekend and see how it goes. Way to go Gray man!!

I was also VERY productive in getting the ball rolling for my business. Ok, i'll spare you all the mystery, I am starting a business as a baby planner! It sounds crazy, it's a very new concept. Basically, a baby planner is to pregnant and new parents what wedding planners are to engaged couples. I will help with gift registries, setting up the nursery, planning the shower(s), birth announcements, what have you. There is a TON to do but i have started making some great contacts. I am also working on seeing if i can find a job from home in the meantime until my business gets off the ground. It will probably take some time until i actually start making decent money from it. Like i said before, there is really very little $$ to invest, just time and energy. I am still playing around with my business model but i will certainly send everyone the link to my website once things get going.

Easton has had an awful, awful cold and not much of an appetite but after a week, we are hopeful that he wil start to improve soon. He has eaten fairly well for me today, but yesterday was a mess, so, we'll have to see.

I also started a pretty extreme diet called the HCG diet. I started a blog to record my progress, frustrations, etc. It is on this same site, just a different name: http://jenshcgloss.blogspot.com Wish me luck!

Ha!

I wasted half a day but i got the friggin slideshow to work.  The videos part is going to take longer, but i'm workin' on it.  Enjoy!

progress, progress...

So Easton's new therapist (OT) is nice, seems to know what she's doing, we didn't do any "therapy" when she was here b/c we just did a history since she had a cancellation & bumped him up & he had just eaten so...  He had been doing really, really well but the last few days he hasn't had much of an appetite & hasn't wanted much to do w/ solids.  I think he has a bit of a cold & and hoping it doesn't move to his ears but he is still soooo happy.  He is sleeping better but only b/c we said the hell w/ sleep training & just decided to feed him once or twice a night & since, he has been sleeping great!  Much longer stretches.

Since we started the fish oil for Gray, he has started randomly saying words here & there, nothing consistently but still, it's progress.  He's said: ball, dog, boat, sheep, raccoon, truck, fish, broke, dada, water, "what-the??"-ya that's soooo from us, and others I'm sure I'm forgetting.  I can't help but think the fish oil has helped.  It's only been 7-10 days since we started.

The plan to sell our house has taken a backseat since (shocker) we need more income to qualify for the size house we want, to make the headache of moving & selling our house worth it. 

So, therefore, I am seriously considering starting my own business.  I have an excellent idea and after i do a little more research & decide to make the plunge, I will let everyone know.  The few people i have talked to about it so far, think it is a great idea, that I would be perfect for it & there is a virtually untapped market in Pittsburgh.  There is also very little investment, which is nice.  I just need to see how well i can get things lined up then i will dive in.  If i decide to go ahead, I would like to have some fliers & business cards to hand out at the HomExpo Kleen Aire participates in the 2nd weekend in Feb. 

I am wondering if it ever going to stop snowing, but so far it just keeps coming.

I am working on posting some pics & videos on here.  Keep checking...

MRSA, therapy & fish oil

So, i got an infection in my armpit (from shaving presumably) which i now know was MRSA.  I went to urgent care & they sliced it open & drained it.  Gross.  They put me on heavy duty antibiotics.  so that should take care of it.  typical day at the Smith house.  :-)

Easton is switching therapists and the new one starts on Tuesday.  We'll see.  She's supposed to be really good w/ a lot of experience.

We have started Grayson on fish oil at a recommended dose, which many parents attribute to helping their kids improve greatly in a relatively short time with their speech disorder, particularly Apraxia.  It was brought to my attention yesterday, that Grayson is considered a "special needs" child.  It was like a punch in the gut.  It never occurred to me that he would be considered "special needs".  I thought special needs was reserved for those kids with mental retardation, handicaps or severe autism.  I was wrong.  Anyway, here is some info about Apraxia & fish oil used in conjunction with speech therapy.  Keep in mind, he hasn't been diagnosed YET, but he has MANY of the signs/characteristics, myself & his speech therapist agree.

All in all tho, although it sounds depressing, we are all doing pretty darn good! 

http://www.youtube.com/watch?v=QKGGMfngRa4

http://www.apraxia-kids.org/

http://www.apraxia-kids.org/site/apps/nlnet/content.aspx?c=chKMI0PIIsE&b=839037&ct=837215

http://cherab.org/

http://www.cherab.org/information/historyEFA.html

http://teachmetotalk.com/2008/05/01/fish-oil-information/

It's a New Year!

Happy New Year! 
I have been meaning to do this for quite some time but i figured the start of a new year was as good a time as any.  I am creating a blog to keep everyone up to date with what is going on in the Smith house.  I will try to post as often as possible.

We had a WONDERFUL Christmas, tho as always, it went too fast.  We were blessed in that, all 4 of our parents were able to be here with us & the boys for Christmas.  It took us literally ALL DAY to open presents on Christmas day, working in "rounds" between meals & naps.  We were so grateful that my mom was able to come out and spend a week with us.  Her & the boys had a great time together! 
My dad moved out here last May and lives about 10 minutes away.  It is so great having him so close.  He unfortunately got laid off in June from the job that brought him out here & has been out of work since.  The silver lining is that he has been able to spend a lot of time with us & the boys.  He has spent a lot of time w/ Easton, in particular, since they had a regular date once a week when Gray had his music class.  So Grampy & Easton are buds.  Its awesome!!

I will start with Grayson (aka, Buggaboo, Bugga, Bug, Beega, Beeg).  Gray turned 2 at the end of November and is doing great!  He is still a very sweet, sensitive, affectionate, happy little boy.  The only words he is saying consistently so far are "up" & "yep" but he definitely lets you know what he wants/needs in other ways.  He started speech & occupational therapy this past August and really likes both his therapists.  The speech therapy is going much slower than his occupational therapy (OT).  The OT was because has had a developmental delay in his fine motor skills (self feeding, using crayons, etc) but he has gotten much better with that & we have actually decreased the frequency of his OT.  His speech therapist & I are concerned that he may have a condition called Apraxia (or childhood speech apraxia).  Which is similar to what stroke victims deal with in that, they know what they want to say but their brains and mouths can't communicate correctly & they can't form the sounds.  The child feels like "my mouth won't work!".  It is very frustrating for him (& us) but hopefully since we got him started with therapy early, we can get it taken care of sooner rather than later.  Some kids unfortunately take years.  We are getting an evaluation done at the end of the month by a doctor at Children's Hospital who's supposed to be the best.  So we'll see what he says.
He is a typical boy in that he LOVES vehicles but mostly, tractors & motorcycles.  He is tall & skinny, he is 36 inches tall (which is like 95th percentile for his age) and 30 lbs which is right about average.  He still isn't crazy about his brother but I am hoping that will change over time.  :-)  He does help out a little with him, picking up his toys that he dropped and giving them back to him (unless he decides he wants to play with it).  He loves being around other kids.  He is content most of the time to sit back and watch the action; people watch.  He loves music & dancing and just your run of the mill roughhousing & tickling (he's extremely ticklish). He also likes to help with some of the chores around the house, he likes to feed the dog, load & unload the dishwasher, mop the floors & is starting to take an interest in helping me cook.  Also, one of his new favorite things to do is play hide & seek.  He's getting pretty good at it too!

Easton (aka, Peanut, Nutty, Nut) is also such a happy little boy.  He is my very big boy!  E was 6 months on Christmas Eve.  He is almost 21 lbs and just shy of 29 inches tall!  He already has such a great sense of humor.  Not nearly as reserved as Gray.  He is very sweet, curious, very aware & alert and very vocal.  he LOVES kisses!  He is a very funny kid & I know he will continue to entertain us for years to come.  I knew since he was 2 days old he had a spark in his eye.  He already LOVES animals and adores his big brother.  He does get a little stranger shy, but that's ok.  Easton is also starting occupational therapy due to feeding issues he has had since birth.  He has dealt with a lot in his life so far (both boys have; health wise) but he is also improving.  Since he was born he has had problems coordinating his swallowing/breathing which causes him to aspirate (breathe in the formula from his bottle) which can cause pneumonia and causes him to choke a lot.  So we have had him to pediatric gastroenteroligists (GI), ear,nose & throat (ENT) doctors, feeding specialists, speech therapists & a couple pediatricians.  He also has acid reflux which not only compounds the problems but also contributes to frequent ear infections.  He is on meds for his reflux & i think we are starting to get a handle on his feeding issues.  As he progresses with his OT, his feeding should continue to improve.  He started solids in the last month and at first was very difficult for him.  He has improved greatly & we have moved up to the next stage of baby foods.  We have also just recently started sleep training him as he has still been waking up a couple times at night wanting to eat.  So after 6 months of this, we are over it!  Come on E, get with the program!!  It isn't as bad as it was with Gray but we aren't home free yet either. 

Both boys will be starting Kindermusik the end of January.  Gray has taken music class for about a year now but this will be Easton's first class.  Gray really loves it & I am hoping Easton will too.  They are in different classes so it allows me some undivided fun time with each of them individually.  The classes are held at a church a few minutes away (tho they are not religious in nature) and they offer child care.  So while i am in class with one, they have someone watching the other one in the nursery.  I am hoping it will work out as well as it sounds and am looking forward to starting the classes again.

Work is slow for Ryan right now but we are expecting it to pick up again the middle of February when we have our annual home show.  It usually gets us some work.  Ryan has been looking at other career options (as he does every year when we get slow & it stresses him out :-))  We pay a ton for health insurance being self employed and are tied to the business at all times.  We are grateful for the flexibility it allows us & that it has allowed me to be at home with the boys full time but are considering being employed by someone else may lessen some of our biggest expenses (insurance & taxes, namely).  But we will see where that path takes us.  I am also planning on heading back to work once things are stable with both boys therapy.  I think it may just be part time at first.  Again, we will see.

Hope everyone is well & i am off to get some sleep, while I can.