Wednesday, November 17, 2010

Landon, Landon, Landon!!!

..........WHAT AM I GOING TO DO WITH YOU??!!

I think I have officially been put in my place.......and it is NOT the BOSS of this little man!  Once again Landon has reminded me that he WILL lead the way.........IN.HIS.OWN.TIME (surely, not mine)!!

Let me explain.............this is the look of VICTORY!!!



AND.........this is what has been CONQUERED.........




YES, you read it correctly, that would be a #3 (as in Stage 3 food, LUMPY and all) in the top right hand corner of that pouch.  You know, the one I wrote about this past Friday stating that Landon would have absolutely no part of.  Well, tonight I decided to frustrate myself  TRY giving Landon a stage 3 food for kicks, just to see what he would do (or should I say, to CONFIRM the fact that I am NOT losing my mind).  Ha!  I guess that didn't work out in my favor, either!!  The nerve this little boy has, WILLINGLY, opening his mouth, bite after bite, until he finished THE.WHOLE.THING!!!!  Smiling, YES, smiling the whole time!!  No reaction to the change in texture and NO GAGGING!!  I am so happy that Scott was there to witness this, to confirm that YES, I am indeed losing my mind!!!!  LOL

Of course I am so happy for this HUGE achievement (and you better believe I did a VICTORY dance), BUT, I am still aware that tomorrow is another day!  It's a start though!!  I offered, he accepted (and did it willingly).  Maybe because I approached it without any expectations??!!  At any rate, HE DID IT!!!  

Can Landon (& his mommy) get a WOOT WOOT??!!











It's a Fun, Fun Sunny Day!!

Well, the sun is shining and Landon just finished his Early Intervention (IFSP) Review.  He did a great job and we spent some time setting some new goals for the next 6 months!!  There is really nothing I would love to see more than my little peanut running around the backyard with his brothers, this spring!!  Anything is POSSIBLE!!  (Once again, we passed on the reading of the results.........we know what Landon can do and what he still needs a little work on).  He was such a trooper through the whole thing and finished on a smiling note!!  I was looking at some videos that we took of Landon over the past week and I came across this one.  Keeping with the mood of the day, I thought I would share it with you.

If I didn't know any better, I would have thought that Landon "JUST" found his hands.  Either that or he is going to make one heck of a music conductor!  You decide=)

**Don't forget to pause or turn the music off at the bottom of the page**


video

Hope your day is fun and sunny too!!!

Friday, November 12, 2010

Time for Intervention (Feeding Specialist)

I confess, my patience regarding Landon's feeding/weight issues has finally gotten the best of me.  I have pretty much exhausted all possibilities and have felt that it was time for an intervention.  Landon turned 21 months yesterday and he has only gained 1/2 a pound since his 18 month check up!  That's right folks, Landon now weighs a whole whopping 18 1/2 pounds=(  FRUSTRATING!!  I have been getting tips from other blogs, friends, "professionals" and nothing has seemed to work LONG TERM (or long enough to pacify me)!  I am a pretty patient person, but I do have limits!

Landon's pediatrician gave us a referral to a local feeding clinic.  Although Landon is an outpatient at Children's Hospital Boston (Down syndrome clinic), it was unanimous that Landon have his initial evaluation done locally (in case he needs to be seen weekly) and he would be seen in Boston at his next clinical in January!  That works for me, as traveling 45 minutes once or twice a week just does not fit in to our schedule!

This afternoon we met with a feeding specialist.  The events that have led us there are as follows:

- Landon officially dipped off the Down syndrome growth chart (at his 18 month well-visit in which he weighed in at 18 lbs.)

- Landon still eats stage 2 purees......will not give stage 3's the time of day

- Landon has added "MINIMAL" solids to his menu (Gerber cereal bars, cheerios, Gerber cheese curls, toast w/ hummus, cream cheese and a thin layer of peanut butter, pirates booty, a slice of American cheese (on occasion) and yogurt (well, this is still a puree)

- Landon drinks 3 "bottles" of whole milk a day (at 5oz. a shot)  I admit, I have issues with him still taking the bottle.

- Landon recently went to the Dr.'s  for his flu shot (2 weeks ago) and weighed in at 18 1/2 lbs.

- Landon "WAS" drinking from his honey bear cup/straw and has since decided that he is so over it!

- Landon will drink from a sippy cup......FOR ME.......but will not consistently do so for others.

- We are not really sure if Landon is "chewing" his food or moving it around his mouth (so that it melts) and then swallows it.


So, I am a bit bothered by the whole bottle thing (it's just not part of MY plan, diagnosis or not, I want him off the bottle by the time he is 2) Selfish on my part, YES!!  It frustrates me that he will not take the sippy cup consistently since he is quite capable of drinking from it (STUBBORN on his part, MOST DEFINITELY)!  I am frustrated that he can eat purees and pieces of toast (crunchy and all) but will not combine the textures or at least be willing to try something new.  We have been stuck on this same menu much longer than I expected.  If I give Landon a noodle with alfredo sauce, he will suck the sauce off and spit the noodle out.  If I give him a french fry dipped in ketchup, he will suck the ketchup off and spit the french fry out.  We have tried mashing and small pieces and putting dinners through the food processor.  We have tried different textures and different techniques and the list just goes on.  Frankly, I'm tired.  I'm tired of TRYING!!  Maybe I'm the problem!!!  Whatever the case may be, in the best interest of Landon...............I.NEED.HELP!!

We met with the feeding specialist today for about an hour and a half.  We went over EVERYTHING from Landon's birth to where he is today.  I was asked to bring in a bunch of things that Landon eats (and I took that VERY seriously, lol).  I brought a little of EVERYTHING from his menu.  I even brought in ALL the different "cups" that we have tried to offer him.  YES, I was prepared!!

We began with transitioning between the different foods, and don't you know, that little bugger did so like each bite was the same!   HA!  The consensus has been that Landon tends to "munch" rather than actually "chew" his food.  WELL, today he showed signs that he was actually chewing!  Surprise, surprise!!  Hmmm, maybe the 6 teeth that he now has, is helping!  Then we moved on to drinking.  Landon generally will drink (unassisted) from his bottle, for me (pretty consistently).  But, lately at home (with grandparents) and at school he has been a little naughty boy taking a sip from his bottle and then throwing it across the room.  There have been consequences for that (like having his bottle taken away)......thanks Melissa=)  But of course the little show off that Landon is, drank his whole bottle (unassisted) for this complete stranger.  Ugh!  Finally, we moved on to the sippy cup, which he will drink from "the most" consistently but will whip it at your head as equally consistent.  Not today my friends, with a little applauding, he drank from that sippy cup and placed it ever so gently on the table after each sip.  SERIOUSLY???!!!

The outcome of this meeting was that the feeding specialist felt like Landon was a good candidate for this program.  The pros are that he has no health issues (no underlying problems that are preventing him from progressing).  Thyroid and Celiac have already been tested for and ruled out.  His tongue thrust is not bad, she feels like with some extra prompting techniques used while eating, that she can help him control it better.  Now that Landon has teeth, they will help him break down his food a little better (to avoid choking, giving him more confidence in trying new things).  She is very confident that Landon will progress (rather quickly) through this program.  However, she felt that we need to place Landon's issues in order of importance.

Our first goal will be to get Landon back on the Down syndrome growth chart.  Although it is expected that he will be a bit smaller, we do not want to overlook a "potential" problem.  It's best that we address this issue now and stay on top of it.  We will be adding a liquid multi-vitamin and we will add 2 bottles of pediasure a day.  This will require me to adjust MY plan.....if Landon chooses to do this by bottle only......then the bottle it is.  The goal is not to stress him out by changing too many things all at once.  OK, I'll give him that (well, maybe a little extension)!!  Also, Landon eats about 5 containers of Gerber baby food a day with snacks in between his 3 meals (for a total of 5 "meals" a day).  She would like us to add an extra container (to make 2) at breakfast.  Hopefully, this will help him to pack on a few pounds.

Landon will have his official weigh in next Friday.  We will monitor him for one month.  And adjust his plan as needed.  The feeding specialist will address some minor issues as we go along.  To this day, this has been the one area that Landon and I struggle with.  Some days it's just so hard when you see him progressing in every other area. You start to wonder if you are missing something........some significant sign that you are overlooking.  And yes, I have a HUGE fear of that!

Sunday, November 7, 2010

Thankful!

........that's how I have been feeling lately!  The days seem to come and go (rather quickly) and the goings on of the day tend to be a blur.  After getting the kids to bed at night, I get to have a little ME time.  Not very long, but long enough to sit and think about the days events.  I'm a bit disappointed that I have been away from my blog for a little while.  I feel like I have missed so much.  But I have been enjoying catching up these past few days.  Thank you to those of you who have continued to stop by and leave comments, and to those of you who have been concerned about my absence and sent me personal messages.  YES, we are still here, LIFE has just been keeping us busy these days.  And these days just keep getting shorter!!  UGH!  Too much to do........so little time=(

I am also THANKFUL to another group of women that play such an important role in Landon's life.  And today,  I think they deserve recognition, and I would like to share with all of you.........their continuous acts of kindness!

I often speak very highly of Landon's EI team (who I blog about on many occasions).  Landon continues to make great strides in many different areas.  I will be sharing his latest with you all shortly.  I'm working on those posts (which are now drafts), SO, I am getting there.  Again, too much to do/say.....so little time=(  Landon's therapists continue to see him at "school" and the staff at his school have been very open to having them there.  And today, this is the new group of women that have me feeling THANKFUL!

Since Landon has been going to "school" full time (since September) he has been making GREAT gains, rather quickly!  I know that this will not ALWAYS be the case, but right now, IT IS!!  And I could not be happier!  Landon's therapists see him for 1 hour every day while he is at school (4 days a week).  They have really been trying to work with Landon during the days regular activities, alongside his peers.  But the important piece in all of this is that Landon's teachers are all actively taking part in learning about each of his therapies.  This way they can continue to work with Landon for the rest of the day/week.

You see, Landon is the first child with Down syndrome to attend this "school".  Looking for a daycare for your child is a very stressful task.  Looking for a daycare for your child with special needs is stressful x10!!  Scott & I decided to send Landon to this school, just like his older brothers.  Yes, even though they were not experienced in teaching children with Down syndrome.  I guess coming from a family of educators, Scott & I share a true belief in "INCLUSION".  There is a part of me that feels that because this school had never taught a child with Down syndrome, they didn't have any preconceived notion or outdated information barriers.  They take things one day at a time and allow Landon to lead the way.  He  does everything that his peers do, and they make accommodations where they are needed, giving Landon the opportunity to reach his fullest potential.  And when they are unsure of something, they communicate with me, Landon's EI staff and accept the opportunity to attend workshops to educate themselves.

Last week, Landon's OT, was hosting an "Including Samuel" workshop.  She invited myself and the staff at Landon's school to attend and to say a few words on our experience with inclusion.  Unfortunately, I was unable to attend that evening (but I have had the opportunity to attend an "Including Samuel" workshop in the past).  I did however send a letter (of our experience with Landon and his daycare) that was read following the viewing, to a room full of "mostly" educators.  Not quite the same as being there in person, but still having the opportunity to help spread awareness.  It was such an inspiring documentary that really gave me HOPE for Landon.  I am happy to say that 5 staff members from Landon's school attended this workshop.......on a Tuesday evening, for 2 hours......on their own time!!    A very special "thank you" to Melissa for sharing her thoughts on inclusion too!!  These women continue to go above and beyond........ EVERY.SINGLE.DAY!!  Ever since Landon started going to this school, they have opened their doors and their hearts to our little boy.  They have taken interest in learning about Landon, Down syndrome, and any technique or strategy to help him reach his fullest potential.

I am painfully aware that this concern for Landon may not be shared at each level of his educational experience.  But right now, we have that!  This part of our journey (20 months in) has been very good to us.  I am grateful to have this positive experience so early...........because I have been given the opportunity to see the positive outcomes of inclusion, on a daily basis.  It does work.  And it can be done.  The key is communication between all parties involved in our children's care accompanied by the belief that inclusion does and can work.

THANK YOU to the staff at Hawthorn Hill Preschool for believing in Landon and all his possibilities.  For not only attending the "Including Samuel" workshop, but for making accommodations for Landon when needed, showing interest in his therapy sessions, for taking the initiative in learning sign language (through the Signing Time DVDs) to communicate with Landon and for passing that knowledge on to his peers so that he can truly feel like he IS included.

The impact that you have on your students is powerful!!  You are opening the door to an inclusive education for so many others (with different abilities) that will follow in Landon's path.  And you are exposing others to the world of differently abled people.  For your willing effort to help spread awareness, we are forever grateful.  I can assure you, that you will help to ease the fears of many parents who may be at the beginning of their  "journey into the unknown".  Landon is lucky to have each and every one of you!

THANK YOU for accepting Landon as he is and for loving him none the less.