The Next Step

I have had this "looming" feeling that we are quickly approaching a crossroads in our lives. Well, I know we are... It's just a weird feeling, not a bad one, but one that makes me anxious, excited, sad and fearful all at the same time.

In addition to adding another member to the family, we've been working on the next school step for Will. He turns five in April. An age I really wasn't sure we would achieve. After a lot of thought, research and trusting our gut, Neil and I made a choice for where we hope Will will go for Kindergarten and then on.

He has been in a Montessori program near our house and it's been awesome. The teachers are very loving and kind and they have kept him safe. We started Will in OT and Speech therapy nearly a year ago and have seen that type of intense 1-2-1 work really help him. We know he needs more than a public school system could give him so we have decided on a school for children with learning differences.

Learning differences means everything under the sun...

The application itself is a doozy.... 7 page application, 300 questionnaire via scantron, speech, OT, PT and neurologist reports and recommendation letters along with a 6 page current education backgrounder. I guess that's one way to see who is really serious about applying!

Class is lead by a Master's holding Lead teacher and is supported by one Bachelor's holding Para-educator. Additionally, a Speech Language Pathologist works with each classroom about 8-10 hours each week leading instruction, working in small groups, or individually with students. There are a maximum of 10 children in each class, and at least a 1:5 ratio is kept throughout the day.

We submitted the application and are number 3 on the wait list for the 2014/15 school year. The only remaining step is a cognitive evaluation which will be completed in early February. It's a four hour test, so pretty intense! We also will go through the interview process in person, including a day where Will would be in the classroom environment being observed. We should know something late March.

The admissions process, in my opinion, is pretty subjective. I've been told they build classes based on each individual child's strengths and weaknesses. It's not based on just one thing, or one score. Not like a Vanguard or Magnet school program where they need the smart kids. If only it was that easy.

If we are not accepted, I know we are going to be absolutely crushed... we really feel like this is the best environment for Will to thrive and be happy in. So, send up a prayer for us please. One thing is for sure, he does NOT need nor want to be home schooled. We would both go insane. :-)

When did my little baby get to be nearly five?

Turkey, Sniffles, Pulled muscle and a Tree

Hope each of you had a very nice Thanksgiving. Ours was quite low key, but enjoyable. We spent the afternoon at my parents house with wayyy too much food. Will enjoyed all the dishes and even saved room for pie.

Carson wasn't feeling photogenic that day, but Will and Cameron hugged it out.

Waiting to be served...

Playing outside post-turkey

I've thought a lot about what I am truly thankful for this year and it is simply this.... my son. Will. There is plenty of other stuff... babies yet to be born, husbands who are amazing, family and friends etc. But none of those could ever surpass the fact that I have woken up every day for the past four years and 7 months knowing I could and did talk, see, hug and kiss my son.

Will also has had his first major cold/congestions since starting on the immune system (IGG) infusions. We made it an entire year on that drug without a single slimy green booger or cough. I will happily take that. However, it didn't make for a very fun time for him. He slowly got over it and I don't think it hit him nearly as bad as it could have. So I'm thankful for that too.

This next part is mostly for my own record keeping... We went to a lake house for a little fishing and Will probably was more active going up and down stairs, fishing, playing, wrestling with dad in a four hour time span than he is all week.

He woke up the next morning complaining that his right leg hurt, behind his knee. Then he started walking around and essentially collapsing on the floor. He couldn't put much pressure or stand on his right leg for very long. Maybe 3 or 4 steps then fall. Of course we both wind up paranoid that it is some sort of disease progression, but for now, we have decided to chalk it up to extreme activity. We spent the next few days keeping him home from school icing his knee, using motrin and rest. By Thanksgiving he was able to walk around without too much trouble, but it wore him out. By the end of the day he was not able to keep good control of his body.

Now, about three weeks later he seems just fine. He has been able to use his leg again for stairs and hasn't had any problems. I'm really hoping that this was a fluke and not something else. One of those little shoes waiting to drop that I obsessively worry about.

Random pic too cute not to post. He asked me to tie his sweater around his neck

and make it a superhero cape.

We managed to get our Christmas tree up after Thanksgiving. Will loved helping decorate and it was so sweet watching him pick out an ornament, find a good spot and then hang it up with such concentration. His fine motor skills were rocking!

I am happy to report that this year our Christmas decorating went smoothly - or as smoothly as it can when you're 8 months pregnant and can't bend over very well --- dragging boxes out of an attic, rearranging furniture and keeping a four year old from breaking it all!

Two years ago we used some really old lights and the bottom third of our tree was on the fritz - we didn't seem to care much as it was the year Will was diagnosed so we just kind of went with it. Then last year we decided to buy new lights (the LED Corona beer style) and made multiple trips to Home Depot purchasing more.

This year the tree went well, but the outside lights had a little issue. I had hired a guy to hang them - I don't encourage my husband to get on a ladder, much less me or Will. Well, they looked great, but the next morning half of them were on the ground. Thankfully, he came back and fixed them (no charge) and they are still up.

So, Merry Christmas!

7 Weeks Out

7 weeks till just the three of us becomes the four of us...

Baby Girl is moving and shaking and continues to grow. We haven't had any problems (knock on wood) and she remains on track for an early January delivery. Send a prayer, good vibes or whatever floats your boat that she stays put and healthy till well after the new year.

One rather HILARIOUS gift has appeared for baby girl, courtesy of a good friend we met through Will's school. I have given up on having any of my children ever consider A&M or rooting for the Aggies as my husband starts the brainwashing early. Apparently, so does our friend Beth.

 

Yes, this is a UT onsie complete with orange and white tutu and Longhorn shoes. She also made baby girl three cute bows and a bow board. Bows? Pink stuff? What am I going to do?

The nursery is in progress... Will is like a drill sergeant. He wants to "work" in there after school and all weekend. We have washed car seats, bouncers, play toys etc. Meanwhile, I am at the point in the pregnancy where getting up and down from the floor quickly is challenging.

Will enjoyed registering for a few things at Babies R Us - namely he used the scanner and would pick random things such as an angry birds tennis racquet - to register for. I had a lot of editing to do that evening online. The "Minnie Mouse" bath towel he picked out arrived and apparently he wants to use it first.

 



Happy Halloween (only a month late)

Happy Halloween Y'all! We got back from Disney World on Oct. 30 and moved right into Halloween festivities. Will was pooped from the trip, but not too tired - I think the candy was quite appealing.

Halloween started off rainy in Houston and his school moved the Halloween parade inside, thankfully!

The Parade went through the school and around the covered deck. Cousin Cameron is right in front of Will and Will's awesome teacher held his hand to make sure he didn't have a cowboy sized crash.

Special snack after the parade

 

We went trick-or-treating to a few houses on our street with some neighborhood friends and then called it a night.

Our next door neighbor's grandson, who Will loves, was "roaring" with Will.

Discussing the best candy route with Lighting McQueen and Cinderella.

Checking out his loot

 

Every morning before school Will would pick out a piece of candy to have for dessert that night. He would literally walk in the house from school and immediately ask for his one piece of candy.

This boy loves dessert.

Bounce Energy & People Against Leigh's Syndrome

Friends
Today I am thankful for the kind hearts and outpouring of support the Leigh syndrome community is receiving this month from Bounce Energy!

During the month of November, Bounce Energy is supporting People Against Leigh's Syndrome by making a $2,500 contribution AND for each new Facebook like received during November an additional .50 cents will be included.

So, go Bounce right off this blog post and over to this link, https://www.facebook.com/bounceenergy/app_210925899026496 and give them a quick like. Then, ask your friends on Facebook to do the same.

It gets even better! When you sign up for electricity service from Bounce Energy and use the promo code “PALS”, Bounce will donate another $50. The campaign runs November 1 – 30, 2013 so don’t waste time; get on Facebook at like Bounce Energy! While you’re at it, go ahead and like PALS too!

Thank you to Bounce Energy for all the support, time and ENERGY to make this campaign happen.

I. Am. Pregnant. For. Real.

I am officially pregnant. Yes, I've been officially pregnant for like 30 weeks now, but reality is setting in.

I. Am. Pregnant.

I am due January 9. Which really is only like 10 weeks from now. That's nothing when you add in a trip to Disney, Halloween, Thanksgiving and Christmas.

I am moving from monthly appointments to every two weeks. I passed my glucose test, whoohoo! This baby girl is moving and kicking up a storm. You can see her kicking. She seems to like resting right on my bladder. I don't sleep well anymore. I can't get up and down as easily as I could just a few days ago. It's harder to breathe. I am carrying Tums in my purse. This baby is really coming.

The crazy thing is I feel so laid back about the whole thing. Maybe it's because we have experienced so much medical stuff that birthing a child, a second child, just seems less difficult. (HA!)

Some wonderful friends have given us some darling seasonally appropriate clothes. I dug through all of Will's old clothes and found some of the least offensive boy sleepers. I had picked generic bedding for Will, so we'll reuse that again. I went through all the blankets, burp cloths and other sweet little baby items and again, found the least offensive items.

The guest room to nursery transformation is taking place in early November. I have started a list of a few items I need to get - namely a baby wear sling type thing. I am going to need to be as hands free as possible to keep up with Will.

The only thing I'm trying to allow myself to worry about is work and ensuring that I have everything all buttoned up. I am avoiding thinking about just how the hell I am going to deal with a baby not inside my belly and Will. Life feels easy right now.

I must say, I am really focused on enjoying every minute of "just the three of us" time that is left. Last night Will was in such a great mood, we all ate dinner together and hung out. It was awesome. Just the three of us. It makes me sad and anxious to think that Will is not going to get my totally undivided attention whenever he (or me) wants it. But, it will be good for all of us.

Talking about the baby

Loving on my little guy

Is this all in vain?

This morning is a hard morning for me. Three mito kids have passed away recently and I have followed their stories, one in particular. I have never met this family face to face, but I have read how he was such a lively child, full of life and fun and then his parents watched for two years as their son died in front of them, in their house, in their arms. I grieve for them and with them in a very surreal and perhaps unhealthy way.

I freely admit that since Will was diagnosed I am depressed and have major anxiety about the future and have used medicine to help me deal with all this. Well, being pregnant that medicine isn't exactly ideal for the baby so I'm off. I weaned off for the last trimester. That medicine helped me stay focused and less anxious, but it also gave me the ability to have a poker face about our life. It gave me a filter for my emotions so I wouldn't be a hot, irritable mess.

I'm not jumping off a bridge or in some deep depression because I'm not on it, but I am FEELING so much more. I can't pull away from the grief I feel for this family who lost their son, from the grief I feel for our family. Are we doing all this in vain? Will our son suffer the same way theirs did? What the hell will I do without Will? I so desperately hope and pray for a miracle, and I can't decide if that's delusional, but it's all I have some days. I just have to believe that something is going to happen to help Will. And I REALLY BELIEVE something will happen to help him.

I watch Will make amazing progress every week in school, OT, PT and Speech. He is a really smart, good kid. Why him? He deserves so much more than we can ever give him.

I grieve because I feel as though Will's story is parallel to so many others who have passed away, and have lived in pain. I do not want that for Will. I already grieve for his unborn sister, who should be totally healthy, but I grieve for her at the pain she may experience in her life. I feel bad trying so hard to have another baby, only to know that she's going to experience things no child should have to. How selfish of me to do this.

It's a "feeling" kind of day around here and that's ok. It feels good to cry, to have a stronger emotion than what I have been having but it's also really scary, overwhelming and just kinda of sad.

I just cry and get it all out, then breath deeply and remind myself to focus on the here and now, be in the moment with Will and enjoy everything each day offers - even the bad and sad stuff. Each day is a good day because I get to hug my little bud, play games and even get angry with him when he tests the boundaries of being a four year old.

One good thing about feeling more is when something is funny, it is really damn funny. This was my biggest laugh of the week, http://suburbanturmoil.com/warped-childhood-restoration-hardware-style/2012/12/03/. I literally bookmarked this link so I could get a good laugh in whenever needed.

Painting a pumpkin - we do not need sharp knife work in this house!

Yes, the finished product is pretty much a black pumpkin with a few streaks of other color.

 

Dracula Mickey Mouse on a fake pumpkin. Gotta love Target finds that won't rot and are fun!

The soapy, bearded boy in the bathtub

Gymnastics - getting into handstand position

 

Feeling pretty pleased with himself as he held his handstand for the whole ABC song

Doing "Puppy dog" walk down the mat. He tried so so hard this morning to make sure his knees didn't touch the mat.

The "attitude" look - MOMMY, STOP taking pictures. NO!

 

Will recently started being able to balance on his knees. This is a pretty awesome accomplishment if you ask me. So today in gymnastics he was not only balancing on his knees, he was "walking" on his knees down the mat. He works so hard at things so many take for granted.

 

I mentioned this new accomplishment to his coach, Mr. Glass, and he immediately had the entire class do the new gymnastics trick - The Will Walk as he called it. He had each kid do it down the mat, including Will. You could tell Will was so incredibly pleased and proud to have something named after a physical accomplishment he did. I was living in the moment without my camera, so I didn't get a photo, but I will forever have that memory.

Life in Photos

Life in Photos...

Eating fro-yo on a date with mom

Checking out his new Longhorn helmet - signed by Earl Campbell - thanks to an awesome event hosted by ChildBuilders!

New boots

Busted lip and swollen gum

Dress up birthday party - shockingly he chose his pirate costume from Halloween last year.

Wearing mommy's construction gear. Yup, it's been a full year since I quit my job at Edelman to venture on my own working with a commercial construction company. He has two of the three key items on - muddy boots and a safety vest. He's just missing the hard hat.

Getting new shoes to fit the new boots. Size 12.5 extra wide!

Drawing circles aka Mickey Mouse during OT

Getting ready for Disney World! Shhhh! Don't tell Will. His magic band is of course the orange one. It's going to be a party of 7 - us and both sets of grandparents!

 

 

Also - tune in tomorrow on MitoActions website, Friday, Oct 4 at noon EST.
http://www.mitoaction.org/blog/introducing-bendavia

Join us this Friday October 4th, 2013 with Dr. Ben Bronstein and Travis Wilson from Stealth Peptides. Stealth Peptides is a private biotech company responsible for the development of innovative mitochondrial therapeutics, including the investigational new drug "Bendavia." Bendavia has been studied in animals and is currently in Phase 2 studies in patients with cardiovascular and kidney diseases. Bendavia appears to target mitochondria and may preserve cellular ATP levels and prevent pathological reactive oxygen species formation in disease. 

Please join us to learn more about this exciting new drug and future possibilities for use of Bendavia by children and adults with mitochondrial disease.This meeting will be recorded and posted in MitoAction's iTunes podcast library. See more at: http://www.mitoaction.org/blog/introducing-bendavia#sthash.7mA9oX1L.dpuf

Michael J. Fox & Parkinson's

I remember very vividly when my mom told me she was diagnosed with Parkinson's. It was October 2008. I was pregnant with Will. My mom, sisters and I had all gone to a proper "ladies" lunch, enjoyed a fun drink (no alcohol for me) on the restaurant patio and then back to my parents house to catch up etc.

Learning my mom had Parkinson's was unknowingly one of the first of many terrifying moments in my life. Thankfully, now five years later she is still doing remarkably well. In those early months I would cry myself to sleep thankful she saw me get married, but wondering if she would be able to see my unborn (undiagnosed) son graduate from college.

I obviously have a unique interest in not only a cure or real treatments for mitochondrial disease, but also for Parkinson's. My mom and I carry the same gene mutation as Will. There's no reason why I couldn't too end up with Parkinson's one day.

Mitochondrial dysfunction is associated with Parkinson's, Diabetes, Alzheimer's and by some reports Autism.

Michael J. Fox was diagnosed with Parkinson's nearly 15 years ago. It's amazing to see what research and forward movement his Foundation has amassed. He is returning to the TV screen tonight in a series premiere based loosely on his life and Parkinson's will inevitably be part of his story line.

Here is a link to an opinion piece written by the CEO of the Michael J. Fox Foundation.
http://www.scientificamerican.com/article.cfm?id=a-to-do-list-for-parkinsons-researchers

I have my DVR set - out of curiosity, out of appreciation and out of hope - hope that perhaps this will amplify the need for viable treatments and a cure of Parkinson's and mitochondrial disease.

What Should Will Know as a Four Year Old?

I saw this on Facebook and held on to it... I constantly go back and forth in my head about how to encourage Will to continue learning and pushing him to do more VERSUS what are his physical limits to learning?

What adaptive things could/should we be doing? How/what could we do that will help him learn without making him feel uncomfortable.

At the mito caregiver retreat I went to recently there was an exercise on roles. The patient role has been on my mind a lot. We were in small groups rotating around trying on different shoes that represented different roles. At the patient experience one person was asked to put on a pair of flip flops and then the small group had to vocalize their observations about the "patient" in the flip flops. The patient was not allowed to speak - to speak for themselves.

I hate the way we have to talk about Will in front of people who are trying to help him. It makes me sad that he now says he is "wobbly" one day probably because he has heard other people, including me, say that.

So, how do I push for growth, recognize his limits and keep his self esteem intact? I liked the thought process this pre-school teacher wrote below.

Written by a Pre-School Teacher –

 I was on a parenting bulletin board recently and read a post by a mother who was worried that her 4 1/2 year old did not know enough. “What should a 4 year old know?” she asked.

 

Most of the answers left me not only saddened but pretty soundly annoyed. One mom posted a laundry list of all of the things her son knew. Counting to 100, planets, how to write his first and last name, and on and on. Others chimed in with how much more their children already knew, some who were only three. A few posted URL’s to lists of what each age should know. The fewest yet said that each child develops at his own pace and not to worry.

 

It bothered me greatly to see these mothers responding to a worried mom by adding to her concern, with lists of all the things their children could do that hers couldn’t. We are such a competitive culture that even our pre-schoolers have become trophies and bragging rights. Childhood shouldn’t be a race.

So here, I offer my list of what a 4 year old should know.

• She should know that she is loved wholly and unconditionally, all of the time.
• He should know that he is safe and he should know how to keep himself safe in public, with others, and in varied situations.
• He should know that he can trust his instincts about people and that he never has to do something that doesn’t feel right, no matter who is asking.
• He should know his personal rights and that his family will back them up.
• She should know how to laugh, act silly, be goofy and use her imagination. She should know that it is always okay to paint the sky orange and give cats 6 legs.
• He should know his own interests and be encouraged to follow them. If he could care less about learning his numbers, his parents should realize he’ll learn them accidentally soon enough and let him immerse himself instead in rocket ships, drawing, dinosaurs or playing in the mud.
• She should know that the world is magical and that so is she. She should know that she’s wonderful, brilliant, creative, compassionate and marvelous.
• She should know that it’s just as worthy to spend the day outside making daisy chains, mud pies and fairy houses as it is to practice phonics. Scratch that– way more worthy.

But more important, here’s what parents need to know.

 

That every child learns to walk, talk, read and do algebra at his own pace and that it will have no bearing on how well he walks, talks, reads or does algebra.

 

That the single biggest predictor of high academic achievement and high ACT scores is reading to children.

 

Not flash cards, not workbooks, not fancy preschools, not blinking toys or computers, but mom or dad taking the time every day or night (or both!) to sit and read them wonderful books.

 

That being the smartest or most accomplished kid in class has never had any bearing on being the happiest. We are so caught up in trying to give our children “advantages” that we’re giving them lives as multi-tasked and stressful as ours. One of the biggest advantages we can give our children is a simple, carefree childhood.

 

That our children deserve to be surrounded by books, nature, art supplies and the freedom to explore them. Most of us could get rid of 90% of our children’s toys and they wouldn’t be missed, but some things are important– building toys like lego and blocks, creative toys like all types of art materials (good stuff), musical instruments (real ones and multicultural ones), dress up clothes and books, books, books. (Incidentally, much of this can be picked up quite cheaply at thrift shops.)

 

They need to have the freedom to explore with these things too– to play with scoops of dried beans in the high chair (supervised, of course), to knead bread and make messes, to use paint and play dough and glitter at the kitchen table while we make supper even though it gets everywhere, to have a spot in the yard where it’s absolutely fine to dig up all the grass and make a mud pit.

 

That our children need more of us. We have become so good at saying that we need to take care of ourselves that some of us have used it as an excuse to have the rest of the world take care of our kids.

 

Yes, we all need undisturbed baths, time with friends, sanity breaks and an occasional life outside of parenthood. But we live in a time when parenting magazines recommend trying to commit to 10 minutes a day with each child and scheduling one Saturday a month as family day. That’s not okay!

 

Our children don’t need Nintendos, computers, after school activities, ballet lessons, play groups and soccer practice nearly as much as they need US. They need fathers who sit and listen to their days, mothers who join in and make crafts with them, parents who take the time to read them stories and act like idiots with them.

 

They need us to take walks with them and not mind the .1 MPH pace of a toddler on a spring night. They deserve to help us make supper even though it takes twice as long and makes it twice as much work. They deserve to know that they’re a priority for us and that we truly love to be with them.

 

 

 

 

Will We Ever Be Shoeless?

Happy 2013 Mitochondrial Disease Awareness Week!

There are so many facts and stats to share about mitochondrial disease, but I am not really feeling like a fact and stat type mom today.

This past weekend I had a chance to attend a UMDF sponsored SPA Weekend - Support, Play, Acknowledge. The activities were centered around the "Welcome to Holland" poem, which I have posted before. The organizers did an amazing job with integrating the theme into meaningful activities and projects.

A few of the activities dealt with shoes... I'm always, always, always waiting, agonizing, debating, analyzing which shoe will be the next to drop. Trying to anticipate it, trying to learn enough about each issue without becoming a hypochondriac, trying to monitor every minute of his life to identify potential problems.

Which body part is going to fail Will, what illness is going to take him down, how will he die, when will he die, what comes next. I have spent countless hours debating these topics and more in my head.

As hard as I try every day to just be in the moment, my emotions and thoughts can spin out of control. Pick an issue - school for Will and I can create "what if" scenarios from here to kingdom come. Everything from what if he gets hurt, what if the kids are mean, what happens when he is excluded for no fault of his own - it could go on literally for days.

I will forever be waiting for the other shoe to drop. Even after he is gone.

I've realized we are actually centipedes in mito world. The number of shoes that are going to drop in our lives, in Will's life, are countless. Once that "big shoe" drops, there is going to be another one lurking in my head and heart. They will never stop. Awake and vigilant because I do not want to be caught off guard. That has happened too many times in our journey.

Right now, this to me is mitochondrial disease.

Small and big shoes will fall one by one. Never in the order you think. Never easy to catch.

 

We were shoeless once...

 

Living in Italy

 

Unknowingly arriving in Holland.

 

Trying to figure out how it all works in a country we were never prepared to live in.

 

And somewhere along the way, we figured out how amazing and

beautiful Holland is once you wipe away the tears.

And waiting for the other shoe to drop sometimes looks the same and that can make it a little easier.

 

 

 

PulseOx and Speech update

The pulse OX machine and oxygen equipment arrived last Friday.

A PulseOx machine sensor (the part you adhere to your body) is sort of like a long band aid that wraps around Will's thumb with two sensors inside. One of the sensors is a small red light, so we have nicknamed our PulseOx machine Rudolph.

It connects to a machine which reads Will's heart rate and his oxygen saturation levels in his blood. If his oxygen levels are below 96, that's not ideal.

The machine

The sensor, you wrap the long tan strip around your pointer finger. The sensors are included on the strip.

We hooked Will up to the finger monitor for heart rate (HR) and Oxygen saturations (OX) on Saturday and Monday nights.

It seemed to stress him out so we did it alternating nights to try and get decent sleep the other nights. He woke up in the middle of both nights upset and wanted to remove the monitor about 1 a.m. and 4 a.m. respectively.

We monitored his HR and OX as best as we could during the night. Essentially his OX never went below 98, but mostly stayed at 99 or 100. His HR wavered between high 60s and low 90s. Consistent with some of the sleep study results, his HR was higher at the beginning of the night then as he settled into sleep it dropped. I would say that it mostly hovered in the 80s.
Our plan as discussed with the doctor is to monitor his HR and OX levels to assess when or if to actually start oxygen during the night.
I am hesitant to start the OX because his OX saturations levels seem fine. Per Dr. Jon's comments - we want Will to be in the sweet spot of 96 - 99. If we use oxygen and his OX saturation levels hit 100 WHILE USING the oxygen, then we won't know how far over 100 he is going. So it could be 101 or 501. The machine doesn't measure after 100. We want to avoid oxygen overdose, hence why the sweet spot is 96 - 99.
So we continue to monitor his heart rate and are not starting the oxygen until we have more data. Frankly this is pretty stressful on him and I'm not going to do it unless we have absolute proof that it theoretically could be helpful.

So, Rudolph and Will are slowly becoming friends.

However, this really doesn't answer the question about what to do with higher than normal resting heart rates as indicated in the sleep study.

Not sure we'll ever really have an answer, but for now I am happy with where we are at and what our trial is showing at home.

Speech milestone!
This is Will's first full week back at school since August 15 ish. He seems pretty happy to be back. He hit a HUGE milestone in speech on Tuesday. We have been working on the "s" sound. He can say s without blending it, for example, sun, so, sit. But he can't do an "s" blend such as smile or slide.

We finally got him to start "adding his s" in front so it was SSS   Lide. On Tuesday, without a lot of prompting he said SLIDE - all one word and he did this pretty consistently during the session. Words such as SLED, SLEEP etc.

We cut the session short because his speech therapist was sick so we opted out for germ exposure. We are ALL so proud of Will. It was a huge moment. 3 days a week for at least 4 months of working on S blends and here we are. FINALLY!

We have a road to go with speech, but I am just so proud of him! Basking in the glow of all his hard work.