The Stevenson Family

Sleep Apnea Surgery

2020-02-14T15:06:00.003-08:00

Welcome back!

Figured it was time to dust off this blog and get it back up and running while we navigate this new journey to the Inspire Therapy surgery.

A couple links on the study if you are interested:

http://www.sleepreviewmag.com/2016/05/clinical-trial-evaluate-inspire-therapy-osa-adolescents-syndrome-expanding/

Study Links:

https://www.ncbi.nlm.nih.gov/pubmed/29098288

https://www.ncbi.nlm.nih.gov/pubmed/31219619

As many of you know, Beau has always had severe sleep apnea. He had his tonsils and adenoids removed right before his first birthday. It was the WORST surgery ever. They couldn't get his pain under control and overdosed him on fentanyl in the ICU. He went into cardiac arrest. It was the scariest time ever. http://alainakylestevenson.blogspot.com/2010/05/long-days.html

We didn't know what else to do for the longest time until we met his neurologist, Dr. Ramey, and he got him into his first official sleep study. We found out he was having an average of 28 episodes an hour (where he stops breathing while sleeping). That averages about every two minutes he would stop breathing. He basically never got into a REM sleep. Which results in behaviors and energy issues during the day.

In 2017, from Feb to Nov his sleep apnea worsened after comparing two sleep studies. Neurology referred us to ENT in Spokane for more options because the CPAP wasn't working. They recommended tongue base reduction. We decided to head over to OHSU (Portland) in the spring and met a different doctor for a second opinion. He was leaning more toward a tracheotomy to be placed. Both options weren't something we wanted to do.

After a ton of research, we found a study they were doing called an Upper Airway Stimulation. The down fall was it was out of Boston and you have to be 10 years old to fit the criteria. Beau was only 7 at the time. We came to the conclusion that's what we were looking ahead to do.

Then Dr. Lam (who we are seeing now and our third opinion) heard about our case through his partner. He called us at the end of the 2017 summer and we talked for 45 minutes discussing Beau's situation. His research is sleep apnea in kids with Ds. He knew all about the Upper Airway Stimulation and his colleagues who perform the surgery. Long story short, once we met him he thought Beau would benefit from a lingual tonsillectomy and epiglottopexy surgery. This is the step before the tongue base reduction where they actually remove parts of the muscle in the tongue.The doctor scheduled the surgery two days later because he didn't want us going home his apnea was so severe. We had our follow up sleep study a couple months later and his apnea episodes were cut in half. He was only having 12 episodes an hour in 2017.

He turned 10 in May of 2019. We started to get the ball rolling again. Had another sleep study done in January of this year. Found out his apnea is getting worse again. He was up to 13.5 episodes. Anything over 10 is considered severe.

To make it quick, Dr. Lam is now one of the few doctors in the country doing the Inspire Therapy study on kids with Ds. He hasn't found a patient that qualifies yet, so Beau may be the first child out of OHSU to have this surgery done. Scary but exciting at the same time. This could be life changing for him.

We head over to Portland tomorrow. He has his scope scheduled for Tuesday. If everything looks ok, then we move forward with the surgery. There is A LOT of steps and paperwork that has to be done because it's still all research based. We have an appointment scheduled for Mar. 20 to see the developmental clinic. They want to follow him before and after the surgery to see if this will help developmentally as well. He'll also have to have 4 post op sleep studies done after the device is placed.

We just pray that everything looks good structurally on Tuesday and he qualifies for the surgery. We hope that if he does have the surgery that he will tolerate it well and it will help him sleep better.

We've got a long road ahead, but we'll keep you all posted!

How Long Will Beau Need a Feeding Tube?

2017-11-01T09:27:00.000-07:00

Will he always need a feeding tube?

I'd always answer with... We aren't sure. He'll need it until he can start eating enough calories by mouth.

On August 12, 2009, Beau went into his first surgery to have a feeding tube placed and a fundoplication done. He was only 77 days old.

(The goal of a fundoplication is to prevent stomach contents from returning to the esophagus. This operation is accomplished by wrapping the upper portion of the stomach around the lower portion of the esophagus, tightening the outlet of the esophagus as it empties into the stomach.)

Why have a feeding tube placed? He was only 29 weeks and 6/7 days when he was born. With being a preemie and having Down syndrome, it was a lot of work for him to eat. He wasn't eating enough to get us discharged from the hospital. The only way they'd let us go home was if he had a feeding tube placed. Being in the NICU for 99 days was enough for us!

I can say now that it was a blessing in disguise. Little did I know, we'd need that feeding tube for A VERY LONG TIME. 8 years 2 months and 12 days for nutrients to be exact!

I'm so excited to say that it's officially been ONE WEEK since we've put any food through his g-tube. We've accessed his g-tube twice all week only to bolus him some water and that's it. He was getting a little dehydrated the first couple days because he wasn't drinking enough fluids. I feel that this may be the real deal. We've been close so many times to weaning him from the g-tube, but we've never gone a FULL WEEK with nothing. There's no going back now! We'll know for sure in three weeks when our dietitian comes back to weight him. Send the positive thoughts our way.

This has been a LONG time coming!!!

How'd we finally get him to eat?

A lot of consistent support! I didn't have the time to sit for 30-40 minutes every time he needed to eat. With the two other kids, it just wasn't possible. That is what he needed and now we have the help!

He only attends school half days right now. Once he's home, he has ABA for two hours a day. The one on one attention is what I knew Beau needed from the beginning but finding that was near impossible. Once he received his autism diagnosis this spring, everything started to fall into place. I feel that we are finally at a very good spot right now for Beau and he seems genuinely happy for the first time in a long time.

Beau Update

2016-12-12T12:14:00.002-08:00

We've been getting a lot of questions lately about Beau. Here's a quick update.

He had a ROUGH two weeks post surgery. He was in so much pain and refused to eat or drink anything. Thank goodness for his g-tube or we would've been stuck at the hospital keeping him hydrated and pushing his pain medications. He drooled a ton following surgery and I was starting to worry that this might be a permanent thing. I'm guessing it hurt to even swallow his saliva because that has gotten better.

He struggled with tolerating any food for awhile. He couldn't even tolerate his formula via his g-tube for about two weeks. He lost quite a bit of weight but has since been gaining it back slowly. He's now back to eating little bits here and there. We still have a TON of work to do before that g-tube can come out but I'm hoping one of these days we will get there. It's more a behavioral issue at this point than a skill thing. He just flat out refuses to eat. To those who say....just don't feed him, he'll eat! Nope!! He would starve himself if he had to.

He's been sick this last week as well. They removed his ear tube (the other one fell out on its own) when he went in to clean out his ears during the scope. He thought that he might be fine without them. It only took 3 weeks for him to get a nasty ear infection. I'm guessing we'll be back in soon for another set of tubes.

How's the sleeping? We feel it's helped some. We've actually heard him dreaming a couple times these last couple weeks. Not sure I've ever heard him dream before. He also seems to be not moving as much throughout the night. It hasn't shown much in his behaviors throughout the day but like we said is those are learned behaviors that we have to continue working on. He doesn't seem as exhausted during the days though. Some days are still better than others. We won't really know the actual results until we complete our sleep study in February. I'm guessing it got a little better. Not a complete fix but we figured it wouldn't be.

OHSU

2016-11-16T17:47:00.001-08:00

A quick way to answer all questions.

Here is the run down on what's going on with Beau. Beau has severe sleep apnea. He has an average of 28 episodes an hour (where he stops breathing while sleeping). That averages about every two minutes he stops breathing. He basically never gets into a REM sleep. Which results in behaviors and energy issues during the day.

Last year from Feb to Nov his sleep apnea worsened after comparing two sleep studies. Neurology referred us to ENT in Spokane for more options because the CPAP wasn't working. They recommended tongue base reduction. We came over here (Portland) in the spring and met a different doctor for a second opinion. He was leaning more toward a tracheotomy to be placed. Both options weren't something we wanted to do.

We've been researching a ton on different solutions. After a ton of research, we found a study they are doing right now called an Upper Airway Stimulation. The down fall is it's out of Boston and you have to be 10 years old to fit the criteria. We came to the conclusion that's what we were looking ahead to do.

Then Dr. Lam (who we are seeing now) heard about our case through his partner. He called me at the end of the summer and we talked for 45 minutes discussing Beau's situation. His research is sleep apnea in kids with Ds. He knew all about the Upper Airway Stimulation and his colleagues who perform the surgery. We met him Monday in office and then did the scope on Tuesday. He was our third opinion.

Long story short, he thinks Beau would benefit from a Lingual Tonsillectomy and tacking up the back of the tongue. This is the step before the tongue base reduction where they actually remove parts of the muscle in the tongue.

-All people have tonsil tissue on the back of the tongue (lingual tonsils) that is different from what we normally think of as tonsils (palatine tonsils) that are located on the sides of the throat and seen when we open our mouths. In some cases, substantial enlargement of the lingual tonsils contributes to airway blockage and obstructive sleep apnea.

Lingual tonsillectomy involves removal of the bulk of the lingual tonsil in order to enlarge the airway behind the tongue.

The doctor offered if we stayed the rest of the week he'd do it tomorrow so we didn't have to travel back and forth again. So here Beau and I are awaiting the surgery tomorrow at 7:15AM.

He's hoping this will open up his airway enough to hold him over until he turns 10 and can qualify for the Upper Airway Stimulation. Us too!

I've been super impressed with everyone so far and how accommodating and flexible they have been just for us.

Hoping for a fast recovery so we can get home.

- Posted using BlogPress from my iPhone

Brantley- 9 Month Update

2016-08-16T13:48:00.001-07:00

You're eating everything in site. We haven't found anything you absolutely hate. You love to eat dirt, sand & rocks as well. You will put ANYTHING in your mouth.
You've found the stairs and love to climb them. You're super fast as well. You mastered all our stairs yesterday.
You love watching your brothers and follow them around as fast as you can.
You are currently working on your top four teeth. Your two front teeth will be coming through after the two next to them. You haven't enjoyed getting these four teeth in. You will have 6 teeth total when all four pop through.
You're pulling up on EVERYTHING right now. I found you standing in your crib the other morning at 4 am with a huge smile on your face.
You want to walk so bad but still don't have the coordination for it.
You've been army crawling everywhere. However, yesterday you decided to try out really crawling a little bit.
You have quite the scream on you when you are trying to talk. You still inhale to laugh!
You haven't slept through the night yet. You're still getting up twice through out the night to nurse and then you go right back to sleep. You sleep from about 7pm-7am
You LOVE dogs!
You're my first water baby. I can't keep you out of it.
You started waving yesterday (8/18)

Weight: 18lb 4oz (23%)

Height: 71.1 cm (30%)

Head: 45.5 cm (62%)

Prayers

2016-07-28T09:47:00.000-07:00

I know I have a lot on my mind when I resort back to blogging. This seems to be the place I go to get all my emotions written down and off my mind. People always comment how amazing and strong I am. However, it is a daily struggle sometimes.

Having a child with medical needs is emotionally draining and exhausting. It also makes you question everything you are doing as a parent. Am I making the right choice? Do we need to do more? What if we don't do anything at all?

I was hit with this reality yesterday.

When we went to Portland a month ago, we didn't get answers. Dr. Milczuk, we visited with wasn't up to date with all the new information and didn't know a ton about kids with Down syndrome and sleep apnea issues. He did try to connect us with his partner, Dr. Lam, who specializes in all that stuff while we were over there but he was out of the office. We should've been visiting with Dr. Lam all along. Long story short, we came home feeling like we needed to get the CPAP to work. Knowing it would take a bit to get use to it but it needed to work. That is still a work in progress.

I kind of accepted the fact that he may always have sleep apnea issues until he can get old enough to wear the CPAP. We'd just deal with the behaviors and daily struggles each day as they came. That was until yesterday.

Dr. Lam personally called me and spent about 40 minutes talking to me about Beau and sleep apnea. He said Dr. Milczuk talked to him about Beau. He basically said that Beau needs something done now. He said it would be a disservice to Beau to just wait and see. He said that they consider sleep apnea severe at 10 and Beau is at a 28. He said because he's starting so severe the only thing that will solve it completely is a trach. He talked about the tongue base reduction a ton as well even though that won't correct it completely.

Long story short, Kyle, Beau and I will be flying back to Portland soon to meet Dr. Lam and then have a scope the following day to see what's going on in there. Dr. Lam would like to look for himself and see where we go from here.

We need a ton of prayers that we find the right solution for Beau.

Brantley-7 Months

2016-06-28T14:33:00.000-07:00

The day after you turned 7 months you decided it was time to move. You weren't strong enough to crawl on all fours so you mastered the army crawl real quick. You went for Tammy's purse strap first! You got your first teeth in this month (bottom two). You haven't enjoyed getting teeth much. You still aren't enjoying baby food. We've tried and tried and you shiver or gag every time. We finally decided to go straight to table foods and you seem to be enjoying it. You are all over the house now and getting faster by the day. You in hail to laugh or talk sometimes. It's the funniest thing! You LOVE watching your brothers and think they are pretty comical. You are waking 2-3 times a night to eat. You still LOVE bath time and being outside. Your eyes are a blue/green/brown color. They seem to change depending on what you wear. Your hair is finally coming in very slowly. It's a blonde/orangy color.

A few pictures from the last month or so.

Brantley- 6 Months

2016-05-27T12:53:00.002-07:00

6 Month Update:

Weight: 16 lbs 5 oz (23%)

Height: 63.5 cm (2%)

Head: 43.5 cm (51%)

Loves his big brothers. He's more interested in watching them than Mom & Dad.
Responding to sounds by making sounds.
Happy most of the time
Puts EVERYTHING in his mouth.
Hates baby food.
Doesn't mind rice cereal or Mum Mum crackers
Rolling around to get places.
Starting to push up on all fours but puts his head on the ground while doing it.
LOVES bath time. Splashes in the water.
Sitting without support for about 5 minutes
Wakes up about 3 times a night. Usually sleeps from about 7:30pm until 6-7am on average

Brantley- 4 Months Old

2016-03-22T13:51:00.000-07:00

How has 4 months come and gone already?

You are growing up so fast. With two busy big brothers, we don't get the extra time to sit down and soak you all in. However, you don't seem to mind at all. You adore your brothers and want to join in on the fun I feel. You're still so chill and easy going most of the time. You're starting to realize you like to be held instead of hang out in your bouncer by yourself.

Yesterday (3/21), you decided to roll over on your own from your back to your tummy. I have a feeling your going to be going in no time. You're always watching where your brothers are at. You'll randomly start laughing at them to get their attention. It works every time. They are really good with you and love to help mom get you a diaper, pacifier, or talk with you so I can get things done around the house.

You are super smiley most of the time. You smile with your whole body. It makes me laugh.

You still have blondish/red/brown hair and you're still rocking the blue eyes like mom!! We'll see if they start to change in the next two months.

Sleep updates on Beau

2016-02-06T09:31:00.001-08:00

Up a little early this morning. I've had a lot on my mind lately surrounding Beau and my best therapy is blogging about it. We've really been struggling lately with Beau's sleep apnea issues. He's always been a horrible sleeper. He had to have his tonsils & adenoids removed right before his first birthday because it was so bad. That was the worst surgery ever. We almost lost him. We ended up in the PICU where they overdosed him on fentanyl. He ended up crashing and they had to give him a reversal drug. To think about another surgery is horrifying. In the last year, we noticed he's been getting up more & more at night. He gets up at least 4 times a night (more than the baby).

We had a sleep study done last year (Feb.2015). They confirmed he has sleep apnea and said he needs to wear a CPAP machine. Well that was a big joke. We had the machine for a month and he wore it for 45 minutes all together. You read that right....45 MINUTES for the whole month! He wouldn't keep it on and would freak out once it got close to his face. Insurance won't cover it if it isn't worn for a certain percentage of time so it was returned. Neurology said to wait a year and we'll try again.

Kindergarten rolled around in August and it was suppose to be full days for Beau. How do I send my kid to school all day when he still needs a nap most days? Some days he wakes up at 7 am and is exhausted by 9 am. There is no way he could make it all day at school. Structured activities are hard for him when he isn't tired. At his IEP meeting, we decided that he would attend 1/2 days and work up from there. The year is half over and he still is no where near being able to attend school for a full day. When Beau is tired, he doesn't lay around. He speeds himself up which usually results in behavior issues.

This brought us back to see neurology to reevaluate. We were going to try the CPAP again but insurance wouldn't cover the CPAP unless we had another sleep study done to prove he still had sleep apnea. I HATE insurance at times! Long story short, we had another sleep study done in November. During the sleep study, they tried to get Beau to wear the CPAP when he was in his deepest sleep. He instantly woke up and wouldn't let them put the mask on. They decided he wouldn't tolerate the CPAP machine. Sooo....on to the next options.

Met with the neurologist yesterday and he basically said that Beau's sleep apnea is getting worse. Which I could've told him without the sleep study based on Beau's sleeping issues at night. He said he's getting concerned at this point with how severe his sleep apnea is getting. If it is left untreated, sleep apnea can lead to learning, behavior, growth, and heart problems. He even said it can be fatal.

He's referred us out to a Pediatric Otolaryngologist who specializes in children, especially those with congenital craniofacial abnormalities. We'll see what he has to say and go from there. He mentioned a possible tongue base reduction surgery. Just the sound of that makes me cringe. That sounds horrifying.

If that is the option at this point, we've already talked about heading to Seattle Children's or OHSU in Portland for a second opinion. We have some major decisions to make this coming year. I was really hoping this would be a "non-medical" year for Beau. It's looking like it will be a very challenging year for us to say the least. My heart is heavy and my mind is spinning. Some days, I just feel this isn't fair! Why should this sweet boy have to deal with all this junk?

Thanks to a fellow DS momma who reached out to me last night and gave me the advice "As much as you can be in the moment with your three and set the worry aside, please try." That is exactly what I'm going to do. Life is to short to sit and worry about the what ifs. We'll take this one day at a time and go from there.

Two Months

2016-01-31T09:59:00.003-08:00

Can't believe I'm already celebrating two months being your Momma, Brantley. You're our easiest baby yet. When I found out I was pregnant with you, I only asked for one thing...that "this" baby would fit into our crazy family. That's exactly what I got!

You're a good eater, sleeper, and very patient! All things that make my life a little easier with three. Thank you!

You've been smiling more and more lately. The last two days we've even carried on a couple converstaions together. I have no idea what we were talking about but you seemed to enjoy it.

We had your two month pediatritian aapointment today. It went well. The doctor said you look great developmentally and growing right on track. Keep up the good work!

Here's your two month stats:

Weight: 11 lbs 13 oz (38%)
Height: 22" (10%)
Head: 15.75 (77%)

You're just like your brothers and have a big noggin!!

We love you so much!

(Update: You're almost 3 months now! Late on posting.)

The SCHOOL UPDATE

2016-01-10T18:07:00.001-08:00

Here it goes. I've been meaning to write an updated post about Beau's school situation. However, I've been meaning NOT to write an update as well.

The reason being...
1) I was extremely pregnant when it was all going down.
2) I just had a baby. Let those hormones level out first!!

8 weeks postpartum and I'm feeling like me again! Some rational thinking can now take place.

We worked REALLY hard to get him mainstreamed with his peers. We even held him back a year and placed him in a private preschool where he could be fully included. He did AMAZING and the teacher was amazing. They (the teacher and his aide) truly loved Beau and knew what he was capable of. Yes...he was a handful at times I'm sure, but what other 4/5 year old boy isn't? However, they treated him like the rest of the kids. I feel the kids benefited from having Beau in class as well. It was real inclusion!

Once it was time to start looking at his transition into Kindergarten, we were feeling pretty confident about it all. They would see how capable he is and place him with his peers in his neighborhood school, right?? We had scores to prove that inclusion works for Beau now. His social scores went from in the 30% range to around 75% in just 1 year being fully included. It was all there.

Wrong! Beau has Down syndrome. There's no way he'll be able to be included in a regular classroom. The curriculum is just to rigorous these days. He's just starting to be potty trained. He's going to need more attention. Blah, blah, blah. That's what we heard. As a teacher, you know how furious this made me?

To make a LONG story short, Beau was placed in a different school than our neighborhood school where there was an extended resource room. That way he could go to the ER room 1/2 the time and a typical kindergarten class 1/2 the time. That wasn't exactly what we wanted but we met in the middle. We met with the teacher and she seemed excited to have him.

Then...school started. These heartbreaking notes started coming home on a daily basis about how "bad" Beau was. I was starting to sense something just wasn't right. Beau started saying, "no school, I'm sick" every morning. He was hating school. We demanded a meeting with his team to figure out what was going on and what they were doing to help him. These meetings continued (I believe we had four) and no plan was officially put into place. I asked for a behavior plan to be wrote up. There was always a reason why Beau wasn't being successful in this setting and it always resorted back to...he needs to be in a self contained classroom where he can get more one-on-one attention.

Our last meeting was three days before Brantley's scheduled c-section date. I was DONE! You can't be successful in a classroom or school for that matter if nobody believes you can. Why waste our time? We decided to move him to the new school and the new classroom. The worst part. He couldn't start at the new school for three more weeks. I ended up keeping him home for three weeks because I couldn't send him back.

We met with his new school and new team the week after Brantley was born. We felt very welcomed from the very beginning. The teacher had all the right questions and concerns and was very proactive. Even though it wasn't our "ideal" placement. It's been the best placement for Beau for the time being. We LOVE his new teacher. I now get email updates on a daily basis. This is what I hear now...

We started wearing his glasses during circle time today. He did not love it, but with prompting kept them on for the whole time (about 40 minutes). We will just make that part of the routine now. When I had our vision specialist review his prescription she said it was for distance and a small correction, so it seems like wearing them during large group activities where he is not at a table would be beneficial, but during table tasks maybe not necessary. Thoughts?

Today was ok. He did a really nice job during work sessions, but had a hard time during our movement group. I am trying something new and it seems hard for him to follow the video we are watching. I had him sit at a table during the movement group bc he was rolling on the floor instead of following along. As soon as we got back into work sessions he was fine.

You see the difference?? She values Beau and believes he can be successful. He is in a self contained classroom but now is starting to be integrated back into the typical Kindergarten classroom at his new school. His new teacher wanted to get him back on track and get to know him before she let him go into another classroom. That is starting now, so we'll keep you posted how the rest of the year goes!

It's amazing what is possible if someone believes in you.

You will do great things Beau!

Where has time gone??

2016-01-09T10:14:00.002-08:00

I've really missed sitting down and blogging. It was really therapeutic for me in the beginning of Beau's diagnosis. Now that we are 6 years in, I don't think about Down syndrome much anymore. I think and worry about "normal" life issues that are happening with all three of my boys. I feel these are just "normal" things and who wants to read about my normal?

With that being said, I'm really wanting to get back into blogging again. I love looking back at where we were six years ago and how much our life has changed over the years. After Bryce came along, life got busy. Now with Brantley, it's really busy! However, I want to be able to look back on these precious years (like I can with Beau).

Time to dust off the keyboard and start blogging again! Hope you enjoy our new "normal" with three boys! I've got a lot of catching up to do. Here it goes...

Our visit with Santa went pretty well. Bryce wasn't going to sit on Santa's lap but he was ok with standing by Rudolph. Beau did great! He walked right up and sat on Santa's lap. He told him he wanted "presents" for Christmas. Bryce wanted a backhoe.

We made our annual trip up to Greenbluff to the pumpkin patch with our neighbors. The boys picked our their own pumpkins and one for baby.

Their favorite game was the bean bag toss.

Bryce thought it would be fun to ride in the train until he realized mom wasn't driving it. He kept saying, "Mommy do it." That's his saying all the time. Mommy has to do it most of the time. Mommy is his favorite (well...besides his cousin, Abbi.)

The boys really got into riding bikes at the end of the summer. We had to go out and buy them helmets because they were getting pretty fast on their bikes. Beau loved riding his strider bike and Bryce favored his little Harley trike (not pictured here.)

There for awhile, all the neighborhood kids would ride their bikes around our block after dinner. The boys looked forward to it every night.

2016 will be the year of more blogging!

Brantley's Birth Story

2016-01-03T16:14:00.002-08:00

Finally got a few minutes to sit down and write down Brantley's Birth Story.

His pregnancy went very smoothly. It was my most enjoyable pregnancy. I think that has to do with the fact that I had a good pregnancy with Bryce, so I had a good feeling this pregnancy would go just as well. I always say I think I have some pregnancy PTSD issues from Beau's birth. It is ALWAYS in the back of my mind the whole pregnancy. The difference this time around was that I already knew what a smooth pregnancy felt like. I just focused on the positives. This time around we didn't have nearly as many doctor appointments and ultrasounds as well. That made me stress less as well and made the time fly by faster. I'm sure having two other little ones helped the time factor as well!

We went right up to my schedule c-section date with no labor signs. I thought for sure I was going to go a little early this time around. Its pretty strange saying that I've had three kids but have never felt a real contraction. A blessing I guess!

We had our c-section scheduled for 12:30 pm so we had to arrive at 10 am to get prepped and ready for surgery. We walked into Labor & Delivery, signed all the paperwork, and then sat in the waiting room for about 5 minutes. We were called back and I was to get gowned up right away. We then went into our recovery room to meet all the nurses, the anesthesiologist, and visit with our doctor. There were two student nurses who were going to observe our delivery as well. They got my IV placed and monitored baby for awhile and then we waited....and waited......and waited! An emergency c-section came in so our surgery was pushed back. I was ready to get the surgery done by then.

We sat in our room and observed the other couple & baby for about twenty minutes until the nurse came in and said it's go time. She walked me back to the surgery room. I remember sitting on the table looking around thinking how many people were in there. I said, "it looks like a party in here." The nurse said, "a party to welcome your baby!"

We kept the gender a surprise this whole pregnancy. I thought it would be nice to do one thing as natural as possible since my pregnancies were so planned out from beginning to end. I loved not knowing going into delivery. It made it so much more exciting. It took my mind off the surgery part and I just kept thinking I wonder what was in there. A boy or girl? I always said a boy and Kyle was thinking a girl. Even our doctor thought for sure it was a girl. He told me at my 38 week check up that he thought it was going to be around 6 lbs and a girl. I was only measuring around 37 weeks this time. This was my lowest weight gain during a pregnancy as well. Looking back now, I'm sure it's from chasing two little boys around all day.

It was time for my spinal. As soon as I sit on that operating table, all my memories from Beau's delivery come rushing back (my PTSD issues!!) Our doctor walked in with pink glasses on. He goes, "I'm supporting the pink. I think it's going to be a girl." I said, "you're going to be disappointed. I'm saying a boy." The nurse stood in front of me while my feet were dangling off the operating table and was asking about the baby names. She was trying to get my mind off the spinal. My doctor came up and sat next to me on the operating table. He knew how nervous I was. I remember just sitting there sweating so bad. I kept telling them I can't stop sweating. They just kept reassuring me it was ok. They had no clue how much I was sweating until the spinal was placed and it was time to get me prepped. The doctor said wow you were sweating a ton. You soaked through your gown. We got a good laugh over it. Proof that I was anxious to just get the surgery part over.

Once I went numb from the chest down, they placed my legs on the table and started prepping for surgery. The blue screen went up and they went and got Kyle. As soon as Kyle got into the room, the surgery started. Before I knew it, the doctor said here comes baby. Then it got quiet...it's a.....BOY!! I remember the room got loud again and first thing I said...I told you so!!

He started crying and the only thing I could see was everyone huddled around the warmer. I think those next two-three minutes are the longest ever. I just wanted to see his face and make sure everything was ok. Once Kyle brought him over to me and I was able to kiss his face, I was able to breathe a sigh of relief. He was here and we both were doing great!

The closing me up part is so much longer than the delivery part. There is so much tugging and pressure. I always get a little nauseous. Once I was sewn up and ready to head to recovery, they transferred me to a different bed and I was wheeled to our recovery room. As soon as I got to recovery, I was able to hold and feed him.

We still didn't have a name for him. I remember for the next day and a half just staring at him and asking, "who are you?" Everyone said that as soon as you see him, you will know his name. That wasn't the case. It took us until the next afternoon to decide on Brantley. We had it narrowed down to Brantley, Beckett & Brooks. After sleeping on it, we agreed on Brantley Edward. Edward is after Kyle's father, Craig Edward.

2015-12-23T08:59:00.001-08:00

Picture collage generated with Smilebox

It's a BOY!

2015-12-08T18:45:00.002-08:00

A quick introduction to our newest little man.

Brantley Edward Stevenson
November 12, 2015
1:57 pm
7 lbs 8 oz
20.5 inches long

Birth story to come when I can find some down time to sit and blog!!

Beau starts Kindergarten

2015-09-20T11:28:00.001-07:00

Beau started Kindergarten this year. This was on his first day of school. Drop off went well the first day. He was super excited and no tears were shed from mom or Beau until mom and dad left I guess.

He found his seat at the table

Bryce helping Mom & Dad drop off Beau

He didn't start riding the bus until week 2. He was super excited until the bus pulled up.

Mom and Beau both cried about his first bus ride.

The ride home wasn't so bad. He had trouble staying in his seat but wasn't crying!

The second day on the bus was much better!! All smiles and excited to see the bus.

Everyone but Bryce was excited. Bryce wished he could ride the bus as well. He cried the first week Beau rode the bus.

Summer 2015 pictures

2015-09-20T10:59:00.004-07:00

We went on a lot of play dates to Jump & Bounce!! Beau asked everyday if we could go there. He LOVES the bouncy slides.

The boys discovered their love for popsicles.

We tried taking the boys to our local carnival. Beau didn't want to go on the rides. Bryce went on the carousel and was done.

However, they loved playing the $5 games.

They really do love each other!

Triathlon & Running

2015-09-20T10:55:00.000-07:00

Kyle participated in his first Sprint Triathlon this summer. He did pretty well besides thinking he wasn't going to make it during the swim portion.

The boys and I enjoyed the big park while Kyle wore himself out!

We also participated in our first team relay race. Being pregnant, I didn't run but was the designated driver/picture taker!

With our team: Lettuce Ketchup!

National Down Syndrome Convention 2015

2015-09-20T10:51:00.001-07:00

We were able to make it to the 2015 National Down Syndrome Convention this year. I've wanted to go since having Beau but it's never worked out for us. This year it was located in Phoenix, Arizona. We just happened to have some good friends who live down there. They only live about 30 minutes from the Convention Hotel. It worked out perfect. Kyle and the boys were able to hang out with our friends while I focused on attending the conference. After attending our first conference, I learned some things that I'd do differently next time around. Next time, it would be nice not to have the kids even though it is VERY family friendly. A little vacation for just Kyle and I would be amazing. Also, there were some late night events I would've loved to attend but it just wasn't possible with the boys. They were already in bed when some of them started. I wasn't able to visit with all my blogging mommy friends like I had hoped. Just another reason to go to another one!

Oh yeah, MOST IMPORTANT... we'd buy a traveling toddler car seat travel accessory next time so we could just put the kids in their car seats and roll them around the airport instead of hauling them, a car seat, and our carry on bags through the airport.

Beau wasn't to sure at first about the plane ride but settled right in and fell asleep both times.

One of the hotel pools

Bryce fell asleep as soon as we started moving as well!

Enjoying our last day at the pool!

Bryce's 2nd Birthday Party

2015-09-20T10:37:00.000-07:00

We did a Bus Theme birthday for Bryce. He became obsessed with school buses when we started talking to Beau about how he was going to be riding a school bus to school. We would read the Wheels on the Bus book every night and since then his love for buses has continued. Everywhere we drive, Bryce points out EVERY bus!

I had to get a little creative. Bryce seemed to enjoy it!!

Hiding his face from pictures!
Happy 2nd Birthday Bryce!

He was really into opening all his gifts this year.

I think he received 15 school buses to play with. We have no shortage!!

Favorite foods: Salad with ranch, fruit (apples, nectarines, grapes, pears), CAN'T live without milk, Pop tarts (thanks Auntie Randi!), pancakes, hot dogs. He's a VERY picky eater.

Favorite things to play with are: Anything sports related (basketballs, baseballs, football, etc.), LOVES to read books, riding on his tricycle.

Favorite show: Chuggington

Things he enjoys: Coloring, taking all the toys out of the toy box (he can destroy my living room quickly), his blankie, copying his brother, eating!

Things I don't want to forget:

He calls all construction equipment "new houses" because of all the construction going on in our neighborhood.
When reading books, he wants to grab the pictures off the page.
He tries to ride in his toys. He always asks me to help him. Like his miniature buses and cars.

Our Summer Camping Adventures

2015-09-20T10:03:00.002-07:00

Trying to do a little catching up now that I have a little down time with Beau in school and football season in full swing. A little "me" time!! I've really missed blogging but just didn't have the time all summer to sit down and do it.

We took a couple camping trips this summer. I was super nervous at first. I wasn't sure how the boys would sleep in a tent or how Beau would do staying around the campsite. Both trips went great and we made some great memories!!

Bryce roasting his first marshmallow

Beau LOVED playing with all the beach toys.

It took Bryce a bit to warm up to playing in the water. He still didn't want to get "IN" but didn't mind playing in the sand.

Dad helping Beau roast his first hot dog.

The men had to join in on the biking fun.

This is totally Bryce. You ask him to smile and he'll look away and just look at you out of the corner of his eye. He's our shy one!

The boys weren't a fan of the canoe but we wanted them to try it out.

Building sandcastles with friends

We did some hiking around the campground

Beau discovered he LOVES riding his strider bike.

Beau and Hayden cruising around

Baby #3 Update

2015-08-22T07:26:00.000-07:00

Due Date: November 19, 2015 the c-section is scheduled for November 12.

How far along: 27 Weeks 2 Day

Next Appointment: Wednesday, August 26 for my glucose screening and follow up appointment. This pregnancy has been way easier than the last two. I think I've only seen my doctor like 3-4 times so far for this pregnancy. Everything is going smooth so far!

Gender: Unknown

Exercise: Normal nightly walks and chasing the boys all around. Nothing routine or organized

Stretch Marks & Belly Button: None. My belly button is pretty much flat at this point.

Sleep: Still sleeping pretty good besides the nightly wake ups from Beau. He still gets up 1-2 times a night. I have to go plug him into his food, lay with him until his feeding is done, and then climb back into my own bed. My body is use to waking up all night long, so I'm hoping when baby comes it won't be in to much shock.

Cravings: None. This pregnancy has been different than the last two. I'm never really hungry and don't crave anything. My weight gain for this pregnancy is way down as well. That's a plus for me! I've been feeling good.

Symptoms: Braxton Hicks contractions mostly when I'm out walking or over doing activities. Some round ligament pain usually when I lay on one side longer than the other at night.

Movement: Lots of movement and now it's becoming more visible from the outside. Kyle & Maria have both felt baby move at this point.

Baby’s size/Milestones: Baby weighs around 2 pounds (about the size of a head of cauliflower) and is about 14 1/2 inches long with legs extended.

Labor Signs: None

Miss Anything: Running after this last weekend when everyone was running Spokane to Sandpoint.

What I love: Feeling good and still having energy to get things done around the house.

What I’m looking forward to: Cooler temperatures and for Beau to start school. We need some routine in this house again!

Recent Purchases: We moved Bryce into a big boy bed about 2 weeks ago. Now baby has all the furniture moved into it's room. I was just trying to decide on some gender neutral color themes. I decided to go with turquoise and grey. Then once baby comes and we learn of the gender, we can add more colors at that time. I bought two gray crib sheets and some turquoise curtains. It's a start!

What are we up to these days??

2015-07-14T11:27:00.004-07:00

2015 has brought a lot of new & exciting changes coming our way!

The most exciting is we will be welcoming one more little one in November. We've decided to not find out what we're having this time around. It seems to be the only natural thing we can do. After having Beau, my pregnancies are considered high risk now. We've done all the genetic testing and have our c-section date scheduled already for this baby. Everything is going great! Now we just let baby grow, grow, grow!!

Beau's all signed up and ready for Kindergarten. We're very excited about his placement. He isn't attending our home school like we had hoped for, but the school he will be attending seems to be excited to have him. From our very first IEP meeting, they've been very welcoming and want to make accommodations for him to make it a very successful year. He'll be in the typical classroom for a little under 1/2 the day and then he'll be in an extended resource room for the academic piece of the day. It's a classroom for K-2nd graders. There are 12 kids in the class and 3 teachers. Kindergarten is all day at this school. With Beau's sleep issues, he gets to work up to attending full day. He'll start his year off just 1/2 days and work up from there. The ER teacher has been awesome so far. She wants us to come in this summer and meet with her and get to know Beau a little bit before the first day of school. Praying the year goes as well as I am anticipating.

Beau played in Challengers baseball again this year. He improves every year. However, he still wanted to hit the ball and run and get the ball before he ran the bases. He did lots of sitting from base to base as well. His energy level is still pretty low at 6 pm at night. Hopefully, we can get him to wear the cpap mask this year and his sleep apnea will improve. Until then, we just make sure he has a nap still during the day.

We've been super busy this summer! Between bike rides, walks, and hanging outside. We've went on two camping trips and flew to Arizona for the National Down Syndrome Convention. The camping trips went way better than we had anticipated. The boys loved it and slept well for tent camping. The trip to Arizona went well, but it was HOT down there. Thanks to our friends, Cedar & Melanie, the boys enjoyed there time with dad while mom attended classes all day.

Bryce will be turning two already this coming Sunday. Time has flown by!! He's our sensitive & shy guy. He's a momma's boy for sure!

2015 Update Thus Far

2015-02-26T14:36:00.000-08:00

These last few months have been busy! Our patience and pocket book have really been tested these last few months. Thank goodness for Grandma & taxes who came and saved our sanity! We got a little getaway for Valentine's Day that was much needed for all of us.

We had a very relaxing time with just the two of us!! We headed to Quinn's Hot Springs for an extended weekend getaway.

On to some updates....where to start??

I sat down today and thought to myself that I believe Beau has seen every specialist possible this year and it's only the end of February. I know, it could be worse! However, it's exhausting and draining sometimes to try and figure him out. Why all the tests and procedures?

Neurology: Sleep apnea

He finally had a sleep study done at the end of last year and they determined he has sleep apnea. They prescribed a CPAP machine. We tried that for a month and he wore it for a total of 46 MINUTES all month long. That was an ultimate fail. He hated it! We are going to revist it in about 10 months and see how he does then. Neurologist said his apnea will only get worse as he gets older, so he's eventually going to need it. He's hoping the older he gets the more he'll get use to it and realize how much it helps him.

Gastroenterology (GI): Feeding issues

After completing his intensive g-tube weaning program last year, he was doing pretty well eating orally. He was eating probably 90-95% of his calories orally. We were still using the g-tube for hydration purposes since drinking seems to still be a work in progress. Then comes October/November, all his therapy sessions approved by insurance were used. That lead us to taking November, December, and the beginning of January off of all therapy. He regressed a TON! Ultimately, I just gave up. All his food had to be pureed and it was a fight to get him to eat it all the time. Also, he was having diarrhea non-stop when he was eating orally.

That lead to the GI visit. She did stool studies (which all came back normal) and then sent us to the allergist.

On a side note, he's now back to 100% g-tube feeds (BOO!) and isn't loving any foods at the moment besides his crackers. We pulled his appetite stimulant medicine because it's also an anti-histamine which I believe was making him MORE tired on top of all his sleep apnea issues. That was resulting in some awesome behaviors!! Life's been interesting around the Stevenson Household lately!!

Allergy, Asthma and Immunology

We got in this Monday for the allergy test workup. They did four different tests of eight on the inside and outside of his legs. They hand picked different foods to test since we aren't really sure what's causing all the issues. They all came back normal. They said he has a lactose intolerant and a contact allergy to yellow dye. Nothing that should be causing the diarrhea.

She also did some blood work to look at his immune system. She wanted us to have a plan of attack for him when he gets sick, so he doesn't end up in the hospital every year. FINALLY!!

The doctors have always said he has asthma, but she said they don't actually test for asthma until a child turns 7. She was concerned about all his recurrent bouts of RSV. She prescribed him Qvar which is a preventative therapy for asthma. We only use it as soon as he gets sick and then a week after all symptoms are gone. It should help with bronchospasms (tightening of the bands of muscle surrounding the airways). This is what causes the lungs airways to become narrow or blocked, making it hard to breathe which then results to needing o2. Which lands him in the hospital. I also received a call today from her office. They scheduled another meeting with Dr. Drain next Wednesday to discuss the blood results. I'm guessing something came back red flagged but nothing life threatening since we have to wait until next Wednesday. I hate waiting!

Pediatrician

A couple weeks ago, Beau started getting these random spots all over his body. They were like faint little bruises all over him. His cheeks were really flushed and that was about it. No fever, runny nose, etc. I took him to the pediatrician to see what he thought. I think his exact words were, "yeah I can see why your concerned. Those are weird." Obviously, my mind went straight to the worst case scenario after the doctor ordered a complete blood count (CBC). *Children with Down syndrome are many times more likely to develop either acute lymphocytic leukemia (ALL) or acute myeloid leukemia (AML) than are other children.

It was the longest 24 hours ever! Thankfully, his blood work came back fine. They didn't go away for awhile. The doctor thinks it was just a virus causing the rash.

There is a quick update on Beau! Bryce will be next.