The Oliver's Twist

A Taste of Christmas

2012-01-03T11:57:00.000-08:00

Hey, were back, well, kind of. With three children ages 5 and under and the demands of therapies, nursing, doctors appointments, feeding schedules and not so savvy sleep habits, there has just been no time to blog. I know there are moms that can do it, I'm just not one of them!

The point of this blog post really is to show off my darling kids and brag a little bit! We had a wonderful Christmas with family and it was a joy to watch our new addition experience her first Christmas.

Christmas eve nap with his best buddy, Frosty and is Auntie.

After spitting up all over her beautiful Christmas dress and while getting changed, Jason caught these shots. Who needs a Christmas dress when you are this cute?

The excitement of Christmas all over her face!

Nathan LOVES his cousin Megan, aka: MeMe

My sister's family got Nathan a new Frosty. These pics only capture a few moments of the joy he experienced when he realized that he had two Frosty's.

MeMe loves all of her cousins!

Grandma and Nathan, Nathan's other best friend. He adores her.

Bella opening her new Gymboree outfit from Grandma and Grandpa.

Sweet Bella, anxiously awaiting what was hidden behind all of that paper on Christmas morning!

Tap shoes, just what she wanted!

Santa brought London a new dolly and Bella drew beautiful pictures for her stocking.

London loved presents, eating them, that is!

Mmmmm...more wrapping paper!

Big sister "helping" little sister. Forget the spoons, just eat the paper!

Nathan adored his Santa stocking, he spent a lot of time talking about it on his iPad.

Meet London

2011-07-11T16:16:00.000-07:00

So many wonderful stories to tell, so little time to do it in. Here is a little snippet of how life started for London, words are not needed. Enjoy!

Thank you for your sacrifice, Marine 1st Lt. Michael Johnson

2011-05-28T16:16:00.000-07:00

In Loving Memory of Marine 1st Lt. Michael Johnson

Thank you for the ultimate sacrifice. You are loved, you are missed, you will not be forgotten, you are a true hero.

Here is a link to our blog post from when we got word of Michael's heroic efforts to save and protect others in which his own life was lost: http://oliversfamilytwist.blogspot.com/2009_09_01_archive.html

Awesome...3000!

2011-05-13T15:28:00.000-07:00

Last weekend was Bella's third time and Nathan's first time participating in the Awesome 3000 in our town. It is run by the local education foundation as a fundraiser and this year there were over 3,200 kids ages 3-13 that participated.

Nathan's race was first. He participated in the Special Needs category along side kids with all kinds of different abilities.

There were kids that participated with and without assistance, and Nathan, by far, was the youngest (and smallest) one!

When the gun first went off, Nathan just kind of stood around, watching everyone and taking in all of the sights and sounds. He really wasn't interested in walking with or without his walker. We picked him up and carried him a short distance and then set him back down to walk with his walker. He then switched from hand held walking to walker walking to carrying on and off the entire way. When we reached approximately 25 yards before the finish line, we set him down with his walker and gave him some room to see what he would do on his own. The crowd immediately erupted in cheers and his full attention went up to the stands to see what the big fuss was about. He continued to be more interested in checking out the crowd than he was walking to the finish line (who can blame him!).

At this point, Bella came on to the track to help motivate him to move forward, and of course, he did. He will do anything for his sister! We had to help him guide his walker and make it move because of all of the distractions, but we were determined to help him reach the finish line on his own two feet. After a lot of coaxing and a ton of cheering from the crowd, Nathan finished with pride and Mommy finished with very wet eyes and smeared mascara.

There was so much symbolisim to this race, I am still too emotional to write about it.

Next was Bella's turn. Most of the kids had their parents run with them; however, Bella was determined to run by herself this year now that she is a big five year old. She kept pushing her hand out telling my mom (who was right next to her) to go stand "over there" because she was going to do it by herself.

Unfortunately I was unable to snap many pictures of her because as soon as she decided to run by herself, I took off across the field so I could get pictures of her crossing the finish line. BUT, due to the masses of kids crossing the line at the same time, I could not find her. I was sooooo bummed! After a few frantic moments of looking for her, we finally found her as she was getting her medal of completion. We were able to capture a few post race photos of her being cute as ever!

With Intent...

2011-05-01T21:43:00.000-07:00

Up to this point in his life, Nathan has been fairly "quiet" when it comes to verbal communication and sounds. Don't get me wrong, this does not mean he hasn't been communicating, but the majority of his communication has been through sign, gestures, body language, and his communication device (Proloquo2go powered by iPad).

We have heard an occasional "nigh, nigh, nigh, nigh" when he is tired and tons of "hoot, hoot, hoot" and "mmmmmmmmmm" at random times. There are days when we hear a lot of these sounds, and then there are several days in a row when we virtually hear no sounds.

Well, as always, he revealed something to us on his OWN time, when he was ready. This is the story:

Multiple times over the weekend when Nathan was around Jason we would hear, "Da, Da, Da, Da" and he would either follow that up with a sign or a gesture to let his Da Da Da Da know what he wanted. At first we didn't really believe that it was done with intent, we thought it was just coincidental. HOWEVER; to prove us wrong, he continued to do it over and over every time Jason was in the room. There was no other time during the weekend that he uttered, "Da, Da, Da, Da" unless Jason was in his view. To really prove his point, he crawled over and stood up behind a chair that Jason was working in and said, "Da, Da, Da, Da" in which Jason replied, "What do you need Nathan?" Nathan's responded with the sign for "swing". So immediately Jason rewarded Nathan by putting him in his swing and told him thank you for letting Daddy know what he wanted. He did it with intent! He said "Da, Da, Da, Da" knowing that those sounds would get a response from his daddy!!!!

And then...Jason and I were both in Nathan's room getting him ready for bed when he tapped Jason's belly and said, "Da, Da, Da, Da", and then tapped my belly and said, "Ma, Ma, Ma". Whoa, caught me off guard! I have randomly heard ma, ma, ma, ma a hand full of times over the past year, but it has never been (or at least I thought it wasn't) with intent or put into context.

I have no idea if Nathan will ever use verbal communication as his primary form of communication, but to hear his first verbal words being Dada and Mama was a pretty amazing feeling!

Thanks to his speech therapist, his ENTIRE team of specialist as well as the endless hours my mom, dad, and sister intentionally invest in therapeutic activities, Nathan is being given the best opportunity possible to develop all aspects of his communication. He is truly a blessed little boy!

Happy 3rd Birthday Nathan!

2011-04-21T08:17:00.000-07:00

From overcoming fears and aversions to gaining so much physical and mental strength, it has been a miraculous year to say the least!

Happy birthday sweet Nathan! We love you and are in awe of what you have accomplished this year!

(You may need a kleenex for this one, I did.)

Wordless Wednesday: Enjoying the last day of being two years old

2011-04-19T23:00:00.000-07:00

First Shopping Trip On His Own Two Feet

2011-04-16T22:34:00.000-07:00

Today was Nathan's first public outing with his walker, and boy oh boy, was it great! We were birthday shopping at the Learning Tree and thought it would be a safe and stimulating place for him to try his independence out on foot for the first time.

He walked from the car, to the door, through the door and down the aisles by himself. We had to do some of the steering at times because he wanted to go off of the walkway, but other than that, he did it all by himself!

Nathan's favorite toys of the day were the texture balls. He has some at home, but he was really interested in the yellow and green ones (the colors he doesn't have). Every time we walked away from the texture balls, he turned his walker around and headed right back for them.

He loved gazing at all of the games, posters, and puzzles.

At one point he signed "piano" and got down from his walker and crawled over to a little Melissa and Doug piano that was sitting on the floor. He got very frustrated because it was covered in plastic and he couldn't touch the keys. He kept turning it over while signing "piano, please".

By the end of our trip his legs were definitely tired. We ended up carrying him out of the store and put him back in his stroller. It was the longest he has ever been on his feet, walking without someone carrying or pushing him!

It was an indescribable moment to watch him navigate on his own two feet and get to where he wanted to go without having to rely on being carried or pushed in a stroller. I know that someday he will walk independently without his walker, but he will only do it when he is ready. I am elated that there is an alternative method that gives him the independence he has fought so hard for to obtain.

And yes, I am STILL a germ freak! We were right behind him every step of the way with hand sanitizer. In addition, you can see by the pictures that we were the only ones in the store for most of the time.

Oh, and one more thing...for those of you that have been asking about the baby bump, here it is. That's about all I will reveal!

A Pony Ride by Nathan Oliver

2011-03-15T15:15:00.000-07:00

A Pony Ride

Nathan Oliver

This is Pumpkin the pony.

I love to ride ponies.

One dry afternoon in March, Grandma and Grandpa Oliver invited my sister and I out for a pony ride.

First, my sister got to ride. I had to wait patiently for my turn.

Then it was my turn. I even signed pony right when I got on.

I reached out to pet him.

And then I gave him a hug.

My Mommy got brave enough to let go of me to see if I could balance on my own. She had nothing to sweat about because I am a big boy now and my balance is getting so good!

Daddy, Sister, and Grandma went with Pumpkin and I on a walk down the gravel road. It was so much fun!

After my turn was over, Sister and Grandpa took Pumpkin on a walk. I think this was Sister's favorite part of the day.

The End.

Happy 5th Birthday Princess Bella!

2011-03-10T16:18:00.000-08:00

Our sweet Bella turns 5 today! Enjoy watching her explore, grow, and celebrate life throughout this last year!

A Bitter Taste of Reality, One I Hope To Change

2011-02-23T14:39:00.000-08:00

I set out this morning to preview a potential charter school for our dear Bella to attend next year. As one in a group of 15 visitors, I was greeted by a variation of the school's staff and 5th grade students eager to share the successes of their school and pitch for new potentials to apply. We broke up into small groups and were given a tour of the school. I chose a 5th grader as my guide because I wanted to experience what the school was like from her point of view, being that she had been there since the school opened when she was a kindergartener.

Immediately I was impressed with this young lady's ability to speak and guide a group of what could have been an intimidating bunch of adults around the building. As we peered through the doors she was able to tell us what every class was doing and what they studied throughout the year. This well educated, charming girl proudly showed us the wall that displayed their sister school located in a 3rd world country. They partner with this school by sending much needed books and other educational materials. Once again all of this seemed so natural for such a young girl.

The last stop we made was outside a closed door with the letters "LRC" displayed on it. In our district it means Learning Resource Center. It is a room where kids that are on IEP's (individualized education plans) are pulled out of a classroom for one on one or small group instruction. The kids in the LRC are usually (not always) diagnosed with a learning disability, a mild form of retardation and/or are on the Autism spectrum, or other reasons that qualify them for an IEP. Basically it is where Nathan will end up for a partial day, or perhaps more, when he is in school. As a school teacher myself, I am THANKFUL for the hard work these teachers do. I have seen so many of my students benefit from the extra dose of guidance and individualized instruction they receive. But let's get back to the tour.

Our sweet guide explained to the group that this room was for kids who needed extra help with reading and math. She proceeded to say that the students were also there so that they wouldn't distract kids in the "regular" classrooms so the regular kids could keep learning. This comment stopped me dead in my tracks...for many reasons. I took a deep breath, widened my eyes so that my tears weren't so obvious, and kept my composure when in reality all I wanted to run out the door and cry my eyes out.

This young girl, whom I know meant no harm by her comment, who still is charming in my eyes, has had a school experience where "those kids" have been portrayed as a distraction, as time takers, taking educational time away from the typical students. No matter where this perception was formed, it is now her perception and I'm sure the perception of many other of her peers and teachers. It is no fault of her own for thinking or saying this, it is what she has been exposed to and has experienced as truth.

AHHHHHHH!!! This is me screaming and crying! IS THIS HOW MY SWEET NATHAN IS GOING TO BE PERCEIVED, A MERE "DISTRACTION" TO "REGULAR" KIDS? How on earth can I put him in a school situation where he will be treated and made to feel this way? No, I'm not projecting irrational feelings and no, I can't change people's insecurities so that they will look at Nathan as a whole person, but dang it, WHY?

Nathan is nonverbal and constantly makes humming noises, this will be considered a distraction.

Nathan knows his alphabet, numbers, shapes, sign language, and can operate a computer, all at the age of two and a half. He has more skills at this age than many of my students had entering kindergarten and first grade, but yet he will be a distraction because he hums.

He will be a distraction simply because he is different.

Will he have friends? Will people want to be around him? Or will his differences scare them away because they don't how to communicate with him?

Will he get made fun of because his thumb is crooked?

I know in the early years kids are kids and don't notice the little differences, but as they get older, they do notice them, just as my sweet fifth grade tour guide noticed and perceived "them" today.

I really don't want to put Nathan in a full time education setting where he is strictly with other children with intellectual, physical, and social differences just because he might be a distraction to others. Nathan CAN learn and has the ability to learn. With the proper support he will learn to be an asset to his peers and be a positive contribution to his community. He may not "look or behave" the same as his "typical" developing peers, but he will be just as valuable. I will continue to advocate for his ability to learn in a "typical" environment until I see that the environment is no longer appropriate for his intellectual and emotional well being.

This reality really stung today. I have lived this reality as a teacher and now even more so as a parent. The latter is harder than the former, let me tell you. Please if you are a teacher, IA, administrator, remember that those "distractions" have a heart, they have the need to belong to a community of people that care about them, just like the "regular" students. It is hard figuring out how to do that for many, but the more these children feel loved, accepted, and treated as an equal with respect, the less of a "distraction" they will be.

My friend Terri (Addy (RTS) and Kate's mom) as been a huge advocate, mentor, and trail blazer in the area inclusive education where she lives. I only hope to have the presence and composure to do such a thing for my son and my community. It's a huge undertaking, one that needs to be done for ALL people...

By the way, we are still considering this school for Bella. This experience, by no way, will deter us from the possibility. I know it happens everywhere, not just this school. And, I still think my 5th grade tour guide is a charming, well rounded, outstanding student!

Fantastic News and Other Tid Bits

2011-01-28T21:03:00.001-08:00

We got a call late tonight with some of Nathan's blood test results that we have been anxiously awaiting since last Thursday.

For the first time in Nathan's life his white blood cell count is in the normal range! For those of you who don't know why we are so excited, here is the scoop...

(This is my own interpretation, not meant to be medical advice, or taken as scientific fact!) What I have learned, and have been told, is that an elevated white blood cell count means there is likely some kind of infection somewhere in the body, sometimes it can be a indicator of the big ugly "C" word...cancer. The twist with this particular problem is his medical team (which consists of several fabulous specialists) could never find what was causing the elevation. It was a mystery. Dr. Hematology even consulted with the RTS guru from another country... he was baffled as well. So we were left with a big unknown as to why the count remained so high.

This particular medical issue is one that has constantly been on the forefront of my mind since my sweet boy was an infant. I do not like not having answers as to what is causing Nathan's medical issues, especially when the "c" word is thrown around in the mix of possibilities (some medical journals state that he has a higher risk of cancer because of his syndrome). My mommy "gut" feeling, not medical fact, tells me that the elevation was due to his chronic lung problems during his first 18 months of his life. His lungs NEVER had a chance to heal because he was sick, intubated, and had so many sedations in such a short amount of time. Since we have been so over the top crazy about germs and sickness, he only had two colds during 2010, allowing his lungs to clear and get healthy. He also had ZERO hospitalizations, intubations, sedations, a far cry from his first 18 months of life. Yes, we have been over the top by avoiding public situations and anyone with a known sickness so I have to find some justification for our craziness. It makes me feel better to attribute his well being to our fight against germs even though it may actually have nothing to do with it at all. I hope that statement doesn't come back to haunt us with sickness just because I feel so good about his current state of health. So I am hear to say, I will take a deep breath and try to file this one away...yes, I just said it, so now I have to do it.

In the same breath, I just want to say that I am aware that there are several RTS babies right now that have been very sick and are currently hospitalized. As we experienced for a year and a half with Nathan, these times are very scary and filled with moment by moment uncertainty. These experiences tear families apart by miles and hours sitting in hospital rooms waiting and hoping for good news. My heart and thoughts are with these families in hopes for a speedy recovery for their children.

The other information we received is that Nathan indeed has low ferritin levels, which Dr. Pulmonology thought might be a problem after his last sleep study. Nathan moves around in his bed A LOT during the night. Sometimes he even wakes up and has a party in his bed for 2-3 hours during the middle of the night, or shall I say, early morning hours. He never complains or cries during the time that he is awake, but he sure does plenty of hooting (my RTS family knows the sound :) and keeps us awake! So it is confirmed that the low ferritin is likely causing the sleep problem and can easily be fixed with an iron supplement. We are hoping it helps!

In other news, we have started the potty training process. Around Christmas, Nathan started signing the word "potty" so we took advantage and started putting him on his little potty. He has had a lot of success, but I know it will take a long time. He has taught us that the second he signs "potty" we had better get him to the toilet or else it's too late. Much more to come on this adventure!

A Writer In The Making

2011-01-26T19:10:00.000-08:00

Bella has really taken off with her writing lately! As a four year old, she is doing fantastic. Here is her journal entry from today. She wrote this without any help (I wrote the date, she wrote the 2's in the date). My teacher friends will appreciate this! I, as her mom, am ecstatic about it! She loves writing about our puppy, Barkley.

Wordless Wednesday: Oldie but Goldie, One of My Favorites

2011-01-11T15:27:00.000-08:00

Surprise!

2011-01-06T11:56:00.001-08:00

Yep, no help needed to interpret this one.

This was a definite surprise to us.

The cute dumpling is due early in July. He/she will be born late in June though!

It's my excuse for not blogging much over the past couple of months. When your 37 and have the pukes and are looking for every opportunity to nap or go to bed early, it doesn't leave much time for anything but survival!

William, Nathan's RTS brother, is going to be a big brother on the same day that Nathan is going to become a big brother. How cool is that?

Vocabulary

2010-12-13T11:45:00.000-08:00

Nathan loves to learn! He is constantly wanting to be read to, sort shapes/objects, and look through one of his many stacks of flashcards. I'm always amazed at the information he is able to retain. Since he is nonverbal, I often wonder what is in his little head that he is unable to communicate through the signs that he knows and the icons he can access on his iPad. I KNOW that there is more than he can communicate, I wish I was better skilled in helping him get it out!

In this video you will see that his picture vocabulary is growing. Excuse my constant talking, asking him to "look at Mommy", but I found that if I get his attention before I ask him to make a choice, he is much more accurate. You will also see that his cute little pointer finger sometimes wanders before he points to the correct answer. We just found out that his eyes don't work together so it takes them a second to focus and for him to get his finger to move where he wants it to go.

Enjoy!

Oh yes, sorry about the sideways video, I can't figure out how to make it upright!

A Moving Speech

2010-11-24T10:28:00.000-08:00

I don't often take the time to listen to or watch videos or other media on the internet simply because I just don't have the time. However, this morning as I was reading my friend Jessica's blog I was inclined to take the time to watch a video that I hope will move you in the way it moved me.

If you are sitting at your computer and don't have time to watch, just listen and continue to do your work in another window! Here is the link: http://community.specialolympics.org/_22007-Fremd-High-School-R-Word-Speech/video/483951/82244.html

This young student went out on a limb. He put his reputation on the line, but he didn't care. He spoke from his heart.

I am so happy to know that there are trail blazers out there, preparing the way for my sweet Nathan to enter the public world.

Thank you Soren!

Touched

2010-11-02T08:17:00.000-07:00

One day last week there was a knock on the door and on the other side was my neighbor. As I opened the door he handed me a piece of paper and said, "This lady is trying to get a hold of you. She said to tell you that she's from So Delicious. She really wants to talk to you but couldn't find your phone number. I don't know how she got my phone number, but her is her information. Call her."

I must say, the whole thing was a bit weird. The funny thing is that I had just blogged about Nathan's drink and how we use the So Delicious brand of coconut milk yogurt, so it kind of made sense, but was still weird.

A little while later after I was done feeding Nathan, I called the number on the piece of paper. As she answered the phone, a sweet voice on the other end said, "Is this Brandi?" I responded appropriately and asked how she knew me. She said that she works in marketing for the yogurt company and was searching hits on their products and was lead to our blog. What she said next is something that will be imprinted on my heart for a very long time. It went something like this:

"I am not someone that is easily moved, but I read your blog and watched the video and was deeply moved by your son's story. I can't imagine what you and your family have been through. I went to the owners of the company and asked if there was something we could do to help your family out with his drink. The agreed to send you vouchers for free products."

Our conversation went on for about another ten minutes. We discussed some of Nathan's health and nutrition issues along with other products that they have to offer to enhance his diet. She continued to portray her sincere compassion for our family and all that Nathan has endured in no uncertain way. Yes, I had a good cry on the phone with her as I was deeply moved by this stranger's kindness.

This woman, a mere stranger, went out on a limb to find us. She was moved. What she doesn't know is how much she moved me and rekindled a flame that was just about put out. Thank you Ms. So Delicious, you touched my soul.

And thank you Turtle Mountain for your generous donation! You are helping our son to grow healthy and strong!

A Sigh of Relief

2010-10-30T07:47:00.000-07:00

Yesterday there was an email in my in box that read something like this: "You have a message from Dr. Pulmonology. Please sign in to your account."

I knew exactly what was going to be in that email...Nathan's sleep study results. I really didn't know if I wanted to open it or just call Dr. Pulmonology to interpret the results because I don't like getting bad news in an email without having the doctor available for me to ask questions like; how bad is it?, does it require surgery?, how long will he be under?, are there other issues we should look for?, will this be life long?, and so on.

However, I mustered up the courage and opened the email. This is what it said:

Respiration: Average respiratory rate was 22 per minute. There
were a total of 0 obstructive apneas, 1 central apneas, 0 mixed
apneas, and 1 hypopneas. The overall apnea-hypopnea index (AHI),
therefore, was 2 events/hour. REM AHI 0.2 events/hr. The
respiratory disturbance index (RDI) which includes the AHI and
RERA index is 0.2. The mean oxygen saturation while awake was
98% and during sleep was 97%. The minimum oxygen saturation was
92%. There were 36 desaturations >3% for an index of 4.3/hour.

Did you see that? ZERO obstructive apneas, ONE Central apnea, and his oxygen stayed at an average of 97-98% with a less than 3% destaturation rate for the night!

Here is Dr. Pulmonology's impression:

The sleep
latency was normal. Sleep stage distribution was normal. Sleep
efficiency was normal. No snoring was heard. The patient had a
normal number of apneas. Nathan does not meet criteria for
significant obstructive sleep apnea. Nasal airflow sensing was
limited during this study and it is possible that more subtle
events were not detected. The patient did not exhibit any
snoring, which is consistent with absent OSA.

Let's rewind a little:

Nathan's last sleep study showed approximately 45 apnea episodes AN HOUR with his oxygen getting down in the low 80's. As a result of his last sleep study it was recommended that his tonsils and adenoids be removed even though he was so young (we were told that removing them before the age of three can cause bleeding problems during surgery and they could possibly grow back). However, he ENT surgeon felt Nathan's apnea was so bad that the need to have it done outweighed the risk.

We were against having his adenoids removed because we suspected that Nathan had a submucous cleft palate and had read that the adenoids support the submucous cleft palate and prevent it from sagging, leading to other feeding, speech, and sinus problems (which he didn't need to add those to his list of challenges).

So, surgery was done during early Fall of last year. The surgeon came out and said that he had to take Nathan's adenoids out because if he didn't, we would be back for surgery within the year because his airway was so small and they were taking up airway space, contributing to his apnea and swallowing problems. He said that we could deal with the feeding, speech, and sinus issues as they showed up, if they showed up, in only a way that a surgeon can do.

Fast forward to today:

Nathan's swallowing issues, as far as textures go, have greatly improved. He did have a little sinus problem, but allergy medication took care of it 100%. And...the boy is nonverbal at this point so it is too early to tell if it is going to effect his speech.

But...the big one is that he is apnea free! I'm sure we will have to continue to check it periodically throughout his life because his anatomy will change. But for now, we will muster up the courage to put his pulse oximeter away and only use it only when he is sick. We have hooked him up to this every night since he was brought home from his first surgery at three months old to monitor his oxygen and heart beat.

So a big sigh of relief is being taken around the Oliver home. We are elated to mark this one off his list of diagnosis for the time being!

On a side note this was documented in the study:

The patient had a moderately elevated number of periodic limb
movements. The majority was not associated with arousals.
Periodic limb movements can be associated with iron deficiency,
sleep disordered breathing or exist independently.

We knew he moved a lot during the night! This one will be an easy fix...I hope!

This just in...Wordless Wednesday (a late one)

2010-10-27T19:20:00.000-07:00

The Cost of Drinking

2010-10-26T10:06:00.000-07:00

Nathan loves to drink, in fact he is very clear in how he communicates his desire to drink by signing...

"More"

"drink"

"please"

"Mmmmmm "

He consumes a total of 1300 to 1350 calories a day. 420 of those calories go through his g-tube in the form of goat milk along with one scoop of Duocal (palm and coconut oil powder). The rest goes in by mouth in the form of his "drink" and solid food. Insurance is kind and pays for his Duocal at approx $140 per month. We pay approximately $200 a month for the following ingredients for his drink:

Wowie, zowie...$340 a month for the boy to drink! But if you add the rest, the part that insurance covers for his g-tube...$330 per month for feeding bags, $30 for syringes, $120 for pump extensions and $350 for the pump rental, it's $1170 for the boy to get his liquid nutrition of 420 calories per day into his belly! Oh yah, I forgot the $180 every three months for a new g-tube :) But then again, we pay 20% of the total cost after insurance every month so add another approximately $190 to the mix and we are to a grand total of $390 a month out of our pocket for his liquid nutrition. Wooohooo! I wont go into the cost of his meds (that insurance doesn't cover) and other expenses... I might fall over if I actually write it down and see it in print.

If we chose to have him on a formula, our insurance would cover the entire cost. However, every formula we have tried either causes him to vomit or break out in a rash/hives. So after many trials and errors, this is what we have come up with. It is nutritious and what he needs. The coconut milk yogurt is used as a thickener. All of the other thickeners cause his reflux to get out of control. But on top of his gluten and dairy free diet of solid food, this boy is expensive to feed!

Alas, it's all worth it. He's growing, learning to eat, learning to drink, and most of all thriving! He's making his way to someday being g-tube free. So here's to you big buddy...no matter what it costs!

Carpe Diem With Our Skydiving Daddy!

2010-10-18T21:11:00.000-07:00

Sunday was a gorgeous, sunny, Fall day, and what better way to end it than by jumping out of and airplane and skydiving into the sunset sky? Yep, that's what my husband did, he took his first leap with one of my dearest, childhood friends, Durinda. Durinda took her first dive a few weeks ago and my husband has been chomping at the bit ever since he heard about it, so he and Durinda took advantage of this beautiful Fall weather and flew the friendly skies together, only out of the airplane, not in it! Here are a few pics (not edited) from the air. Another jumper with a camera mounted to his helmet was snapping the shots...

Headed out to the plane all suited up...

Thumbs up!

Your professional jumper, the guy that guarantees a safe flight!

Jason, Durinda, their professionals and some crazy guy in the middle.

Headed out and up!

Scooting to the edge, there's no turning back now...

And, out you go!

Soar like an eagle...

Hang loose in the air...

Make a funny face...

Flap your wings... (check the moon out in the upper right corner)

Check the altimeter...

And poof, there goes the chute!

Your chute opened, and you blissfully floated through the sky...

Your landing was perfect!

And you were all in one piece!

Carpe diem my love and my dear friend, what a great experience!

He Did It!

2010-10-18T13:16:00.000-07:00

He did it, he took TWO steps! It wasn't pretty, it wasn't with great balance, and we couldn't get him to do it again, but he did it! He overcame his fears and let go! Woohooo!

Communication Tidbit...

2010-10-12T14:22:00.001-07:00

While visiting with Dr. Oncology today the doctor introduced himself followed by asking Nathan how old he was. Given the fact that the doc had never met Nathan and didn't realize that he was nonverbal, I held up his iPad and Nathan responded by finding the correct icon, replying, "I am two years old". First of all I loved that the doc addressed Nathan (he was a fabulous doc), second of all, Nathan responded on his own, I did not have to answer that question for him. He did it by himself, in his voice, I was just the device holder!

Oh, and just in case you needed a little more of him...

Wordless Wednesday...

2010-10-07T06:53:00.001-07:00

Visiting the Roloff Farm Pumpkin Patch

2010-10-04T13:07:00.000-07:00

I'm going to try my first Smile Box slide show. Here goes!

Create a free slideshow

Precious Pumpkins

2010-10-02T16:06:00.000-07:00

So...I will write about our great trip to the Roloff Pumpkin Farm later this week, but I just had to give a little preview of my precious pumpkins!

Wordless Wednesday...

2010-09-22T14:50:00.001-07:00

Wordless Wednesday...

2010-09-14T20:34:00.001-07:00

Introducing: Baby Oliver #3

2010-09-12T16:32:00.000-07:00

Here is a first glimpse of baby Oliver #3. He was born July 23, 2010, second of four pups. Weighing just 2.2 pounds, Barkley is a Havapoo (half Havaneese and half Poodle). He came much earlier than we expected (we wanted to wait until our kids were a little older) because we need new carpet and wanted to potty train before it gets installed. Thanks to all of you for your well wishes and prayers for our new addition.

We Are Expecting!

2010-09-11T23:53:00.000-07:00

We are expecting...sooner than we planned.

First pictures and more details soon!

Stay tuned.

Take A Visit

2010-08-23T19:48:00.000-07:00

Take a visit over to my friend Jessica's blog http://newkindofnormal.blogspot.com/2010/08/inside-those-four-walls.html Here she writes about a subject that hits very close to home. Many people have left great, insightful comments. Please feel free to continue the discussion here or on her blog if you would like. Jessica and I are not the only moms who have experienced this. There are so many more.

Wordless Wednesday...

2010-08-11T12:48:00.001-07:00

Hey, Lady...

2010-08-01T14:02:00.000-07:00

Hey Lady... don't you realize that your long stares and furrowed eyebrows are about to make me cry? I know we are in this children's boutique at this yuppy shopping mall together shopping for our darling daughters and it appears that my son's noises are bothering you and you are in every subtle way, trying to non verbally communicate that to me. Do you not realize that my son spent most of his first eighteen months in and out of the hospital, enduring horrific surgeries, going to therapies, being told that he may not make it through "this one", and yet you see that he looks and acts different and it seems to be o.k for you to glare at both me and him in this setting? Did you not see that this is indeed a "children's store"? It doesn't say "Only typical children" on the outside. I can handle a glance or even a double take, but glares and dirty looks I can not bear. Do you realize the tears that you have caused me since last night? Are you the typical person that my family is going to have to endure for the rest of our lives? Are you the one that is going to fight against him being integrated with your high functioning daughter? Is your daughter going to grow up and be the one that is going to hurt his feelings and make him cry because of your ignorance? Yes lady, you scarred me. I will get over it and quit crying about it soon. You are the one that causes my skin to grow thicker. I only hope you find a way to see that there are other people just like my son that you will come across again someday and I hope you can find it in your heart to smile or completely ignore them because your glaring eyes and dirty looks do more damage than you can imagine.

Proloquo2go Training

2010-07-29T14:59:00.000-07:00

My RTS family knows the background on the video I am going to show, but I know there are many of you that read this blog that don't have children or family members with RTS so I will fill you in.

Nathan's receptive vocabulary (what he understands) far outweighs his expressive vocabulary (what he can communicate). He can sign a handful of signs, but not enough to express what he want's to communicate and is beginning to get frustrated. We are not sure if Nathan will ever be verbal so we decided that now is the time to get a form of communication started for him so he has a way to communicate his needs and eventually have the opportunity to have conversations with other verbal and non verbal people. So a while back we began to research speech output devices and decided the best device for Nathan would be the Proloquo2o program powered by an iPad (a speech output device allows an individual to press a picture or symbol button that corresponds with what is needing to be communicated followed by a voice output so hearing abled people can understand what is needing to be communicated).

So with Nathan's iPad in hand, I traveled to and from Cincinnati to the national RTS conference and spent a total of 13 hours on an airplane which allowed me plenty of quality time to program his device. Up until this time Nathan's iPad was used for picture and word stimulation along with vocabulary development and of course, a little fun for everyone else in the family. Might I add that "Angry Birds" was played on the airplane to help time go by faster too!

A communication presenter at the conference stated that Nathan should be communicating in 2 word phrases at this point so I decided to program a "want" icon on his device. In addition there are 6 icons on Nathan's home page that he has access to at all times, they are drink, blanket, night night, eat, and family. They are limited right now because we are in the "teaching" phase. Later on he will have access to a larger vocabulary once he can operate the program more efficiently.

Fast forward to dinner this week. Nathan had his drink and an avocado for dinner. My goal was to teach him where the drink and avocado icons were and to have him push the button every time he wanted a drink or avocado. He caught on VERY QUICK. I had to model it for him one time and he took off with it on his own. Unfortunately the program does not respond to his touch very well and when he would touch the appropriate button and not get an immediate feedback he would randomly begin to touch other buttons...which means I had to redirect him back to the proper buttons. So here is his first training video. We are asking him to request a drink and avocado. He is looking at a symbol for drink and a sketch drawing of avocado as well as the other four icons on his homepage.

Wordless Wednesday #1

2010-07-07T10:21:00.001-07:00

Wordless Wednesday #2

2010-07-07T10:17:00.000-07:00

Wordless Wednesday (Teething On Anything He Can Get His Mouth On)

2010-06-28T21:29:00.000-07:00

Determined

2010-06-28T20:59:00.000-07:00

While playing outside on his blanket, Nathan realized that our cat, named Jonah, was waiting by the patio door to get in. My sweet two year old put aside his aversion for grass and set out for his four legged furry friend.

He had to crawl on the grass,

through some barkdust,

and on to the raised gravel cement patio, treating the surfaces like they were indoor carpet.

As he approached his goal of reaching the cat, Nathan's furry friend eluded him and ran for the grass as quickly as he could. You see, Jonah is not fond of kids. In fact, he is not fond of any other person except me. Nathan turned around and followed the same path back out to the grass to catch the kitty. He had a goal in mind and he was determined to reach it, even if it meant having to deal with all of his texture aversions. Unfortunately Nathan was never able to catch Jonah, so I helped him reach his goal and scooped the crazy feline up into my arms so he could be rewarded for his efforts.

The best part of this is that Nathan GOT DIRTY and he didn't care. My boy has never had an ounce of dirt on him, except for dirt from the carpet and wood floors. He loved every minute of it, so did I.

Wordless Wednesday (Cowlicky)

2010-06-23T15:01:00.001-07:00

Play Date

2010-05-17T07:46:00.001-07:00

This is a long story, but I'm going to try and make it brief without losing too much meaning...

A few years ago when we moved into our neighborhood I quickly recognized the face of a girl that I went to school with. We were in different classes from grade school on through high school. In fact, I helped out a lot in her classroom in grade school, it was a reward that good students got to do. I have not seen her since the conclusion of high school but memories quickly flooded my mind when I saw her quirky gait and heard her loud, ever so repetitive voice. I knew immediately who she was. Within a couple of days of moving in, I was over at her house reintroducing myself to her and was greeted with a lot of hugs, head pats, and excitement. I told her mom that Nezzi and I went to school together and we tied the course of 30 years together all in a short time.

Over the next couple of years Nezzi's mom and I had a few conversations out at the mailbox or in the street...they were short, sweet, and informal with Bella usually at my side and Nezzi at her side. Once Nathan was born, our conversations became longer and she became more open. At the conclusion of our conversations Bella would always ask me why Nezzi talked the way she did, in fact, she told me that Nezzi scared her. I gently explained that everyone is different, added a few generalizations and that seemed to satisfy her.

Fast forward to this Spring...

We were outside doing yard work when Nezzi showed up with a bottle of water for Bella. She said, "It's it's it's hot, hot, for you you you you you you. Drink, drink, drink, I love love love love love you you you." Bella said thank you, drank the water and we walked Nezzi back across the busy street.

Since that day, Bella has asked if Nezzi could come over and "play". I thought to myself, "Wow, she's asking an adult woman to come over and play. Is this o.k? Will her mom be o.k. with it? What will Nezzi think?" The next time I saw Nezzi's mom I told her about Bella's interest in having Nezzi over to play and she was excited for the opportunity.

This Friday when we got home from appointments there was a bag of coloring books and a baby doll sitting on our porch. I immediately knew who it was from because Nezzi LOVES to color. I looked across the street and saw her outside and thought it would be the perfect time to have her over and color with Bella. Bella jumped with joy and screeched in excitement as we walked across the street to get Nezzi.

When the girls got here they sat at the dining room table and colored in their coloring books. There conversation was about the characters in the books and soon enough they were both asking for snacks. I felt as though I was hosting two four year olds...cognitively, I was. Soon enough they were outside planting sunflower seeds, playing tag and swinging. Bella was loving every minute of it, so was I, so was Nezzi. When it was time to go, both girls were disappointed, but I reassured them that there would be more opportunities to "play".

We walked Nezzi back home and filled her mom in on what the girls did together, gave hugs, and then cam back home. Bella was elated that she got to play with Nezzi. The one thing that she did ask me after taking Nezzi home was why she was so big. You see, Bella found someone to play with that felt normal to her, she felt like she was playing with one of her peers. The only difference she saw between herself and Nezzi was size. I just reinforced that everyone is different and for now, I am good with that explanation.

My sweet Bella knows no difference right now. I love the purity of her heart. She had a play date and it was fun. That's all that matters to her. She has no idea what that play date did for me. I am grateful.

The Amazing Nathan

2010-05-07T07:52:00.001-07:00

This week has been an amazing week for Nathan developmentally. I have been in awe of all that he has learned to do this week. For starters, he was taught for the first time on Monday at therapy how to climb stairs. On Tuesday while I was out running some errands, he climbed the stairs (two stairs that lead to a sunken living room) at my moms all on his own. In fact, I was not there to see it and my mom had no idea he could do it (me neither since he had only worked on it one time) either. My mom said that it startled her because he was at the top of the stairs and she knew that she hadn't put him there.

On Wednesday, I was at home vaccumming and turned around to see Nathan standing up against the ottoman, walking around it. It shocked me because I didn't put him there and he has never been able to pull himself up to that high of a surface on his own. Here he is...and he did it by himself.

This week has also been a week of new beginnings in the area of feeding. We have been giving Nathan 1 oz of thickened liquid by mouth 2-3 times a day after each feeding. In the beginning when I was giving him thickened goat milk, he would just push it away. So, I got creative and mixed CHOCOLATE soy milk with coconut milk yogurt (as a thickener) and now he can not get enough of it. I never would have given Bella chocolate as an incentive to eat or drink, but I will do whatever it takes to help this little guy learn how to take all of his calories by mouth. I'll leave the "tough love" part for transitioning to non-chocolate liquids when he has mastered swallowing.

So here is to an amazing week! I wonder what is in store next?

Wordless Wednesday

2010-05-05T07:57:00.000-07:00

Nathan's new RTS sister, Brooklynn

2010-04-28T16:19:00.000-07:00

I want to introduce you all to a precious new little baby named Brooklynn. She was diagnosed with RTS a short time after birth and is now three months old. I must say, this is about the sweetest little baby girl I have ever seen!

This darling bundle has so many of the medical issues that my Nathan has had. She has already undergone a couple of surgeries to correct intestinal and airway issues. She has more scheduled surgeries ahead of her to correct the common problems RTS brings. My heart goes out to this family as I know what they are experiencing and going through.

Please keep this little one and her family in your thoughts and prayers as she recovers from a surgery that she had just a couple of days ago. She is scheduled to be released from the hospital on Friday if she continues to stay strong. Her dad says that she is in good spirits, what a gift!

Birthday Celebration

2010-04-25T22:49:00.000-07:00

What a week for my sweet two year old. Wednesday was his "real" birthday and we had my husband's parents over for dinner and cake. It was kind of tricky to pull off because earlier in the day we lost power and had to pick up and go to my moms so I could cook dinner over there. Thankfully, the power came back on and we were able to come home for our celebration.

Boy oh boy did we have lots to celebrate. Not only did Nathan turn two, he ate, no, CHEWED AND SWALLOWED, chicken. He also chewed a little pasta shell and swallowed it. No choking, no gagging and turning purple, no vomit. What a birthday gift that was!

Here are a few pics of the evening for you to enjoy...

Looking at the new alphabet cards Grandma got for him...

Opening a new Matchbox play set...

Sitting on his new tricycle. This is the most awesome trike ever invented. Love the safety features on it!

We had another birthday party for Nathan at our house on Saturday with my parents, sister and family friends. Nathan was in fine form as he entertained with his smiles, clapping, famous "hat" signing bit, and his new skill of walking with only holding on to one hand for support. He was full of life all day long!

Nathan's auntie followed him around and took these awesome pictures throughout the day. She captured some precious moments.

Signing "I love you" to Auntie...

Entertaining with his famous "hat" bit. Yes, we encourage it. It brings us joy!

Sweet sister...

Big boy Nathan! Bella said that he looked so much bigger today than he did yesterday now that he is two. I agree :)

Showing Grandpa how to push buttons on his new book.

Giving Auntie licks (aka: Nathan kisses).

Deciding whether he wants to touch his cake or not...NOT! That's o.k. he will some day.

Daddy's beautiful masterpiece...

New power wheels from Grandma and Grandpa. He loves it! His right angulated thumb is going to need to get stronger so he can push the "go" button on his own!

Lots of packages to open!

Showing us a picture of his fire truck decoration. He likes to point to things and have us tell him what it is. Can you guess what he's pointing to in this picture?

Playing clapping games with Daddy while everyone finishes up their dinner.

And...a sweet smile for Grandma. He adores her more and more every day.

Ahh...we are so blessed.

Second Birthday Video

2010-04-22T00:19:00.000-07:00

Wow, what a year it has been! It has been a year of joy, pain, growth, and gain. We have looked over the rainbow and watched bluebirds fly to help us get through the hard times (surgeries and sickness), dreamed dreams that did come true (crawling, eating, communicating and so much more) , wished upon stars and asked for the clouds to be far behind us (the unexpected things having special needs can bring), but most of all...we made it!

Happy birthday sweet boy! We love you!

Happy 2nd Birthday Sweet Boy

2010-04-21T15:46:00.000-07:00

(We had a power outage in our area today so I am blogging from my moms. No cute pictures or slide shows for my prince today, but I will post one tomorrow...hopefully our power will be back!)

Dear Nathan,

Happy 2nd birthday! You have come so far this year and have continued to amaze us with all that you have conqured. We love you sooooo much!

Love Mommy, Daddy and Bella

No "real" title

2010-04-20T07:03:00.001-07:00

I don't know if I will actually hit the "publish post" button at the end of this post because sometimes I just write and feel better without ever "publishing" my post. I often think of who my audience is going to be when I write and I know that it is mostly families of children with RTS. I know that they are the ones that can relate to me the most, but sometimes I feel that I complain a little too much about the difficulties this road with RTS can bring.

It's the eve of Nathan's 2nd birthday and the last few days have brought about some emotions that I wasn't quite prepared for. I know anniversaries of traumatic events can bring back those horrible memories and can often cause one to re-live the event over and over. In a nut shell, that is what is going on for me. I guess what I struggle with is that a child's birth should not be remembered as traumatic. It shouldn't be filled with whisking him off in an ambulance to a children's hospital where he will be hooked up to machines to help him live and being told that he has been diagnosed with a genetic syndrome that will require lots of surgeries and interventions to keep him alive. That's just not how life should begin. And yes, I'm still protesting a little, it's my nature to protest difficult things.

For the most part, Nathan is doing well right now. His health is the best it has been since he was born. I never really believed other RTS mommies when they told me that things would get better because at 18 months old, they were not better, they were getting worse. But 6 months later, things have improved...they were right. We are miles away from being "better", but we are on the path to getting there.

I guess if I really let down and am honest, what all of this is really about is how the past two years have effected my sweet, ambitious 4 year old. Yes, I know kids are resilient, forgiving, yadda, yadda, yadda. However, I feel like I missed the past two years of her life, the only child that I had the opportunity to have a "normal" childhood with. Instead, I have spent he past two years farming Bella off to my mom, sister and a family friend so I could take Nathan to all of his doctor's appointments, therapies, and hospital stays. Yes, I could have chose to take her with me, but those environments and situations were not where a two and three year old belonged...for many reasons.

It grieves me that we have had to keep her away from typical social things that preschool aged children get to do in order to keep her brother healthy. Yes, it has paid off for Nathan because he has only had one little cold since the beginning of December and has stayed out of the hospital, but we can not get the time and opportunities back for Bella that she has missed out on. Many people do not understand why we chose to do this, especially since Bella is so active and social. But many people don't walk in our shoes and know that sickness is what causes Bella more distress because she ends up getting shipped off and gets less attention so I can care for her brother. And believe me, I have done everything I know how to do to find someone who can take care of Nathan and all of his medical issues so I can have time with Bella. It's not easy.

I miss Bella. I grieve the time I have lost with her. I have missed half of her life and I can't get it back. I feel like I have failed her. She is not the one that has "special needs" attached to her, but she really does have special needs. She needs her mommy's time and attention, the same attention I give to her brother.

So on this eve of Nathan's second birthday I will continue to reflect and allow myself to "feel". But then comes tomorrow...a big celebration for a little man who has come so far!

Oh yes, I am going to hit the "publish post" button, why not? I don't need pats on the back to tell me every thing is going to be o.k, it's just where I'm at today.

More Tulips

2010-04-16T21:48:00.000-07:00

As promised, here's a handful of more tulip pictures. I must say that I was a little disappointed in our pictures this year. I didn't seem to get that "ahhhhh awesome" picture like I usually do in this beautiful setting. The combination of ages, the need to go potty, the dislike of new textures, the desire to ride the cow train and eat ice cream did not lend many moments to snap good photos. It's ok though, there are many more years of tulip pictures to come!

O.k. RTS mommies, here is Nathan's biting in action! His sister is his favorite chew toy! She is so good about it though.

Nathan adores his grandma!

Tulip Flashback

2010-04-15T07:28:00.000-07:00

A year ago at the Tulip Festival...

Yesterday at the Tulip Festival...

A year ago...

Yesterday...

More tulip pics to come!

PECS Training

2010-04-06T15:56:00.000-07:00

Nathan is learning a new form of communication using the PECS (picture exchange communication system) process. Today was his first official day of training with his specialists from Early Intervention. This is his first step towards getting ready to use the Proloquo2go program in which we hope to get started in the near future. You can check the Proloquo2go program out here :http://www.proloquo2go.com/About/ We are really excited about it and feel this is a good fit for him. Nathan will use the new ipad instead of the smaller ipod touch because the icons are bigger and it will be easier for him to use.

Anyhoo, back to today. Here are some clips of the training. He caught on so fast, I couldn't believe it. His teacher's were equally amazed at how quick he caught on.

In this clip Nathan has a picture of his puppy on his tray and his teacher is waiting for him to exchange the picture for the real puppy. She is not using any verbal cues, just a hand out in front of him, waiting for the picture. You will see that his reactions at first are a little slow because he is processing what she is expecting.

This next clip shows that his processing is quicker and he knows what his teacher is expecting him to do :

This last clip is long. You will see at the beginning that he processes quickly, but points to his puzzle indicating that he wants it. His second teacher then (the "prompter") comes over and guides his hand to the picture and helps him hand it to the requesting teacher. This was the last time he needed prompting. He caught on so quick! In the middle of the clip he gets bored and is not quite as interested in the puzzle and quits asking for it. He eventually picks speed back up and begins entertaining with his ever so famous "hat" sign. (Yes Cindy, I should have gotten a hat out for him. I'll catch on someday :) ) Later in this clip you will here me ask his teacher's an important question about prompting.

We learned so much from this experience today and are so excited to expand Nathan's communication options! He never ceases to amaze me!

"Get The Video Camera, quick!"

2010-04-05T08:04:00.000-07:00

Last Friday, I yelled through the house, "Get the video camera, quick!" to my husband because Nathan was sitting down on the counter in front of me while I was eating dinner and he was signing all of the signs he knew as I requested them. I have never tested what he knows out of context but I thought, why not? He successfully signed puppy, happy, eat, more, mommy, hat, thank you, kitty, fish and daddy. I was in awe that he could do it.

But of course, by the time we got the video camera out...no more signing by request. Instead, he turned into a comedian and would only sign hat. I think he kept doing it because we were laughing at his expressions and he enjoyed our responses. You will also notice that every time I ask him to sign "pupppy" he looks around the room for his puppy. Pretty cute!

A Week At The Beach

2010-03-28T22:11:00.000-07:00

We spent last week at my parent's new beach house that they built in Nehalem, Oregon. Their house is absolutely beautiful... My sister, niece, mom, dad, Bella, Nathan and I went over early in the week. Jason drove over after working a few more long days.

My dad is still in the process of landscaping and finishing up a few odds and ends around the property. Bella spent a lot of time shoveling sand, dirt and rocks with him. She loves helping her grandpa!

The weather was on and off throughout the week. We had a few days of sun and a few days of rain...typical for the Oregon coast. On one of the sunny days we headed down to the beach. Bella loved chasing the waves,

throwing and digging in the sand,

and making sand angels (Nathan stayed home with grandma because he still had a cold).

Most of all, I think she just enjoyed letting the wind blow through her hair and experiencing total freedom!

I did have to catch her to get this picture...I'm glad I did!

The kids also spent some time outside scooting and riding bikes. Nathan loved watching his sister quickly zoom by, it made him laugh every time!

On another sunny afternoon, Bella and Nathan played on the sand piles that are in the neighborhood (which is still under construction). Bella had a great time, but Nathan wasn't sure if he liked the sand. Last August he didn't mind the sand, but this time, he was a little hesitant. I'm hoping it was due to him not feeling so great and not texture aversions! Only time will tell. I did capture a few sweet moments of him playing with his fire truck and laughing at his sister.

One evening my dad built a fire in the fire pit and we made smores. I brought Nathan out for a few minutes and boy oh boy, did he dish out the kisses.

In the evenings, us girls spent time scrapbooking after the kids went to bed. I almost have Nathan's first year done, wahoo! I'm sure I could have used the extra sleep, but how often do I get to sit down and scrapbook?

It was so nice to get away from our regular routine for a few days. My parents are very gracious to allow us to come and relax in their new home. Thanks to my mom, Jason and I were able to go out on a short date the night before we left. It was a great way to end the week!

Baby Jesus Medrano

2010-03-15T20:44:00.000-07:00

Please pray for this little guy. His name is Jesus and he is one of Nathan's RTS brothers. He is back in the hospital with a bad respiratory illness. He and his family have endured a lot over the past three months. The hospital has become a far to familiar place and they are just ready to be home with their little guy and their beautiful daughter.

Birthday Bella

2010-03-15T07:51:00.001-07:00

Wow, what a week for my sweet four year old! It was a great week and weekend of celebrating her birthday.

On Wednesday, she woke up to a new "big girl" bike that she has been needing for a very long time. My hard wood floors got plenty of breaking in with her new bike for the rest of the week, so did my white walls. It was way to cold and rainy for her to go outside and it was only fair to let her enjoy her new gift.

Later that day we let her choose where she wanted to go for lunch. She chose Red Robin so they could sing to her and she could get an ice cream sundae. My husband met us there and we had lunch and she opened the rest of her gifts. She got a pair of skates, a new spring outfit from Naartjie, and a new collection of books.

That night we had her favorite meal; steak, potatoes and asparagus. Yes, that was my four year old's request. No mac and cheese, pizza, or tacos for this princess! After dinner, she practiced skating with her new skates...on my hardwood floors :)

On Saturday she had four little friends over for her "kid" party. They played games, did a craft, opened gifs and dressed up in princess gowns. It was so nice for her to have friends to play with, she loved it! And of course, there was cake...check out Daddy's creation this year!

In the evening the celebration continued with our families. We had 15 people over, it was a busy place! She was adorned with more wonderful gifts and spring clothes. She is so blessed to have such a wonderful, loving family.

That same day, we got to welcome our new cousin into this world. He is named after both of his late grandfathers, what a tribute! We went up Sunday to see him and Bella was so good with him! It was like having a real, live doll for her to play with! I can't wait to get to know him more!

My Blanket, My Puppy

2010-03-11T07:04:00.000-08:00

My Blanket

by Nathan Oliver

I love my blanket! I can stick it in my mouth and suck on it.

I can hook it on my teeth to pull my mouth wide open.

I can chew on it.

And...I can give it lots of hugs.

My blanket is my best friend!

My Puppy

by Nathan Oliver

This is my puppy. Well, it's actually my sister's puppy, but I like to play with it when she's not watching.

I can sign "puppy" when I want to play with him.

I can point to his eyes.

I can hug him.

And he can hug me. I love my puppy!

Happy 4th Birthday Bella

2010-03-10T07:37:00.000-08:00

Four years ago today, at 8:10 p.m., you were brought into this world.

We instantly fell in love with you.

Your name means "beautiful" in Italian. It fits perfectly

You had that precious baby face that we couldn't get enough of.

You were goofy and wiggly most of the time.

You grew so fast, always making memorable moments.

You loved being outdoors, especially when yummy treats were involved!

Your precious smile always melted our hearts...

And still does. We love you Bella. Happy 4th birthday!

Just Pray Harder

2010-03-09T07:21:00.000-08:00

The aforesaid title to this post is a statement that has been a sore subject to me in the area of prayer. In recent days there has been a discussion amongst RTS parents about oral language and when and if their child will ever speak, using their audible voice. Amazingly there are stories of children speaking before the age of two, for the first time at the age of 9, or even the age of 23. Some parents have been told by careless therapists that they should no longer focus on oral language because if they are not speaking by the age of 5, then they will likely never speak. Other RTS kids have had speech services involuntarily cut because they were not making progress with their oral language skills and the parents and child were blamed for not working hard enough.

To tell a parent that their child may never speak, walk, read, etc... is a shameful utterance. It is a slap in the face to parents who work tirelessly with their children endless hours every day. But what is more shameful and hurtful to me is when a parent is told to pray harder, put their child on a prayer chain or take them to a prophet or healer so that God will "heal" them and make them talk. Could their be more of a defeating feeling to a parent after praying and being prayed for for years and their child still is unable to use their audible voice to communicate?

Since the day Nathan was born he has been prayed for by literally, thousands of people. Our church as well as many churches across our country have prayed for him and continue to do so even today. However, Nathan still gets sick, is non verbal, continues to need more surgery and is still developmentally delayed. So why hasn't God healed him? Haven't their been enough prayers said for him? Haven't we prayed hard enough? Haven't the right people prayed for him? My answer is yes, yes, and yes. If we continue to pray for him is God going to make him talk? Well my answer is...if that is what he was meant to do. I truly believe that no prayer can manipulate God into changing the way Nathan is. Yes, I have prayed, begged, pleaded and yet, he is the person he was meant to be.

My friend who lost her infant child a year ago on March 1st said it best last week. She said that she had to get over the fact that God gave them their sweet daughter for 200 days for a reason. He (God) knew that she would only be here for 200 days before she was born. She is now in Heaven, happy and healthy. That is their hope for all of their children, to be healthy, happy and go to heaven some day.

When someone tells me that they are praying for Nathan it makes me feel good. It makes me feel like we are not in this alone. Likewise it makes me feel good when someone says, "I'm thinking about you" or "I will think positive thoughts for Nathan". But as with many people who live in constant crisis, what makes them feel better is when people put their words into action and not just lend a casual, "I'm praying for you" (thus a topic for another post).

So, should we stop praying? Should the mother of a sick, dying child quit praying for God to miraculously heal her precious gem? Should the father quit praying for his son to some day be verbal, and use his audible voice? No, no, and no. God knows them inside and out and if that is His divine plan, then He will. But please, don't tell families like this to just pray harder, it's not helpful. It does more harm than good and is more likely to leave them feeling more hopeless than anything else.

The Shoe Lady

2010-03-05T07:11:00.000-08:00

When Bella was ready for her first pair of shoes I took her to a local department store that sells good, but not overly expensive shoes. I quickly learned that her flat, wide, thick, cute little rectangle feet would not fit just any 'ol shoe. In fact, it fit into not a single pair.

So off to another local department store that sells higher end, very expensive shoes. I thought, "They have to have something!" Nope! Struck out again...until a saleswoman comes out to greet us and asks us if she could help. After unsuccessfully trying to fit Bella's chubby foot into several pair of shoes the saleslady told me that Robeez were Bella's best option until her feet thinned out a little. She told us to come back every few months and we would try again.

Lucky for Bella, the next time we went in we were able to leave with a real pair of walking shoes in double extra wide, soft leather and a small hole in my pocket book. This was only due to the fact that the same shoe lady sat with us for over 30 minutes, bringing out every possible shoe that she could think of to fit Bella's foot. What struck me the most was her patience with Bella as she walked, ran, pulled displays off of shelves and charmed everyone that walked by with her darling smile. This saleswoman was never in a rush, never looking at a clock, and always making sure we were happy with our purchase.

Since then we have purchased almost every pair of shoes from this same shoe lady and have often left frustrated with other salespeople when she wasn't working. It seemed as if they were never willing to bring out multiple styles or special order for us. Often their comment was, "There is nothing that is going to fit her foot, you'll have to wait."

Fast forward to when Nathan was born. This same shoe lady saw my belly grow over the nine months that I carried Nathan and genuinely cared about how I was doing with my pregnancy. After Nathan was born I brought him in for the first time when Bella was due for a new pair of shoes. I explained his syndrome to her and that he wasn't doing very well at the time. Her eyes watered as she sat there and let me talk about Nathan's birth. She did not look at her watch, look away, or rush me one single time. I was grateful for her time. A few days after this encounter I received a card in the mail telling me that she enjoyed our talk and hoped that Nathan's health would improve.

Over the past two years she has continued to ask about Nathan every time I take Bella in to get a pair of shoes. She has continued to send cards of encouragement, leave voicemails, and has asked Bella to participate in their yearly fashion show.

We have been so spoiled by her that if she is not working on the day we go to get shoes, we find out her schedule and come back when she is there. To our family, she is more than just a shoe lady. She is someone who has reached out and touched our souls. She's never in a hurry, always has a smile, and possesses that rare, genuine caring way about her.

2010-03-03T07:21:00.000-08:00

The words "Mentally Retarded" are the two words that describe a symptom of my son's greater diagnosis of Rubinstein Taybi Syndrome. He is an amazing 22 month old little boy that smiles, crawls, laughs, plays, hugs, kisses, plays with toys, loves books, and responds to language (both verbal and sign). He endured 4 surgeries and nine hospitalizations before the age of 18 months.

Today is a national day to "Spread The Word To End The Word" meaning to end the usage of the word retard, retarded and its various forms. Moreover it is a day to help people become aware of using the word retarded as a way to describe how they feel when they make a mistake or see someone else do something that they didn't mean to do.

I must say, prior to having a son with a medical diagnosis of mentally retarded, I am ashamed to admit, but I was the one who would say, "what a retard", "I'm retarded", "that's retarded", "...the retards", "...the retarded kids" etc. I only grieve for the stranger that heard me using those words so carelessly. For the stranger whose kid had fought just as hard or even harder than Nathan to survive.

Now when I hear those words, I instantly feel anxiety inside. It depends on the day. Sometimes I get angry, sometimes I just cry, sometimes I just want to take my child up and say, "My son has a medical diagnosis of mentally retarded. Please know that he can hear what you are saying."

I am taking a pledge to not use the word out of respect for people who have been given the diagnosis of mentally retarded. I am learning that the diagnosis is simply that, a diagnosis. I will not allow it to control him and I will continue to push him to be all that he can be. I will still hope, dream, and provide the best possible care for my child. I can trust that my child is going to be a productive member of society. I know that he will teach people more about themselves in a single encounter than most people will learn in a life time.

So please, be mindful of using the word retard/retarded as a way to describe a person or situation. Just as we have become accepting of cultures other than our own and not using slang terms to describe their heritage, be respectful of my child and the way he, and others like him, were made. He will endure plenty of other hardships in his life without being referred to as a retard.

Please visit www.r-word.org to make your pledge if you are ready to make the change.

Walking Practice at Physical Therapy

2010-03-01T16:55:00.000-08:00

Today at PT Nathan practiced walking with a walker and did amazingly well. Up to this point, the walker has not been his friend. He hasn't cared for it at all, in fact, when he would see it, it made him cry. Today was different though. He was motivated. He crawled right up to it and wanted to go out into the hall to walk! Here is some hazy video shot from my cell phone, but I think you will enjoy it. By the way, on his next trip down the hall he actually did it without his therapist holding on to him for about 30 feet.

He is not yet ready to walk independently because his side to side balance is not strong enough, but this is sure a big step in the right direction! We are so proud of him!

First Kiss

2010-02-28T17:26:00.000-08:00

Last month my cousin and his family came for dinner at our house. It was so good to spend time with them and watch the kids play, laugh, and share kisses. Nathan, for the first time, initiated contact with his second cousin who is 8 months older by crawling after her to give her a kiss. It melted my heart! His sweet cousin wasn't quite sure about it at first, but she did let him come back for more kisses so I could get a picture. Check this out!

And here is a great shot of Nathan, Bella, my mom and our sweet cousin.

Sucker Therapy

2010-02-18T07:38:00.000-08:00

For some reason Nathan has been having many oral aversions lately . His fantastic SLP mentioned that it may be because he is now a cognitive eater and has a choice in what goes in his mouth. So, a couple of days ago while we were at the health food store Bella asked if she could get a sucker. I usually do not give in to such a request, but this time I did. I tried to convince myself that it was a healthier choice than a regular sucker because it was made from unrefined sugar and labeled completely organic. Funny how those things can be rationalized.

Later on that day Nathan saw his big sister partaking in one of those delicious suckers and reached out for it. Here is the rest of the story:

From here on out I can no longer feel guilty about handing the little man a sucker because it is now classified under the "therapy" category. Anything around our house that is considered therapy has the right to be a rule breaker!

Laughter

2010-01-26T07:22:00.000-08:00

Yesterday one of Nathan's RTS brother's, Matt, debuted a video on his swing while infectiously laughing, you should really hop on over to http://matthewtooke.blogspot.com/ and see it.

It reminded me of a video I shot of Nathan swinging and being entertained by his sister, cousin, and aunt over Christmas break. So if you need a little pick me up today, click below! Make sure to turn the volume up a little so you get the full effect.

Amazing Animals!

2010-01-24T14:23:00.000-08:00

Three times a day when we feed Nathan he has a "curriculum" (nice fancy word for activities) that we go through with him. Because it takes about an hour for each of his oral and tube feedings we keep him well stimulated to avoid boredom.

Part of his curriculum is to do three to four chunky wood puzzles each time. As before, we have never tried to elicit a response from him to identify the pieces. Our expectation has been for Nathan to correctly place the pieces where they belong (which he is quite good at). Well, today Daddy asked him to show him specific animals from one of his puzzles and this is what he got:

Nathan amazes me! He knows so much more than I ever try to get out of him. We are in the process of putting together his PECS pictures so he can start telling us more about what's in his amazing brain!

Using Pinchers and Playing With Sister

2010-01-15T07:54:00.000-08:00

After Nathan was born we were left with the decision to have his right crooked thumb surgically straightened or to just leave it alone and let him learn how to use it. After many conversations with other RTS parents, some who had their child's thumb (or thumbs in some cases) straightened, and some who did not, we made the decision to not have Nathan's surgically corrected. If he wouldn't have been through so many other surgeries up to this point in his life we would have considered having it done. The little guy has just been in the hospital too many times!

Nathan can use his crooked thumb to grasp food, toys, and other objects without any problems. Instead of grasping at the tip of his thumb, he uses his index finger to trap objects to the base of his thumb. He is quite good at it and it doesn't seem to prevent him from doing things he wants to do. Food, even slimy food, can't escape his pincher grasp...check it out!

Now that he is more mobile and stable on his hands and knees, this is what I find my children doing, several times a day. I've been waiting for this!

And...Bella will also step in at times and help Nathan with his curriculum when I need to step away for a couple of minutes. She is the best teacher ever.

In a week...

2010-01-12T08:30:00.000-08:00

In a week's time, Nathan continues to amaze me. Up till last week he would crawl around in the living room to get to the toys he wanted. This week he is in the kitchen, hallway, up against the sliding glass window looking at the cat, in the living room and sometimes down the hall. I LOVE IT!

In a week, he has learned to walk forward in his walker and make it go whichever way he wants it to go. He doesn't holler for me to come and get him when he gets stuck because he puts it in forward gear and heads right on out.

In a week, my little buddy has learned to pull himself to stand. It takes every ounce of energy he has, but he can do it on his own.

Last week, he did none of this...this week, he's a movin' and I LOVE IT!

Late Christmas Post

2010-01-07T21:40:00.000-08:00

We had a wonderful Christmas season filled with lots of family time, a couple visits to see Santa, good food, a little trip to my parents beach house and much more.

Nathan gained quite a few more skills over Christmas break, the biggest being rolling over from his back to his stomach. He has been crawling since Thanksgiving and rolling over from his stomach to his back for a very long time, but he finally did it! He can now roll both ways. It has helped him become much more independent and happy!

Enjoy these pictures of our children, our house and our tree. My intentions were to get them up shortly after I took them but alas, here they are.

Can you see the Christmas wonder in his eyes?

And the excitement in her eyes that can't wait to open her gifts?

This is kind of a hazy picture, but I had to post it because of Nathan's hilarious laugh. Can you hear him? By the way, the other beauty is Bella and Nathan's cousin!

Getting a tid bit tired of pictures, but still cute as can be.

Our wreath. We always get our wreath right after Thanksgiving from Costco. They are are beautiful (inexpensive) and stay fresh for the whole season.

Hermie and Rudolph sit in our front window. They are part of a collection that my husband started for me before we were married.

Ornaments from our fake tree that sits in the living room. I love the lighting in this photo. We get a 9 foot real tree for our family room.

Table decorations. Bella and I made the gingerbread house...so much fun.

Nathan's first Christmas ornament from last year. It's a series from Hallmark. He got the number two this year. The collection goes up to five. Hopefully they will make them for a few more years!

Our mantle. Bella picked out the M and D stockings for us this year. She said the "M" is for Mommy and the "D" is for Daddy. All her idea. Pretty cute.

Take a visit to New Kind of Normal

2009-12-20T20:57:00.000-08:00

Sometimes I read posts that other RTS parents write and it just hits home with me. I often find that with my friend Jessica. Hop on over to her post from today:

http://newkindofnormal.blogspot.com/2009/12/silent-night.html

http://newkindofnormal.blogspot.com/2009/12/bumprepost.html

There are people that could really use you this Christmas.

Sweet Santa

2009-12-17T12:38:00.000-08:00

My beauties both loved Santa. This is the best Santa ever...he is the real thing :)

Joining Will

2009-12-16T15:44:00.000-08:00

A couple of weeks ago Nathan's RTS brother Will had an amazing weight gain of 3 lbs in a month. Will's weight gain was because of his awesome new skill of eating solid food by mouth! Way to go Will! Well, Nathan's nurse was just out for a growth check and Nathan has gained a pound and a half, grown 1/2 inch in length, and .5 cm in head circumference in just a month. This is incredible! So Will, keep eating and growing, Nathan wants to be just like you!

Now for typical kids, it is expected that our kids to grow at that rate Nathan grew this month, but for RTS infants, toddlers, and preschoolers, weight gain is difficult. In fact, just a year ago, Nathan weighed 17 pounds, so he only gained 3 pounds in a year. As parents of our sweet RTS kids we spend so much time and worry about getting enough calories and proper nutrition into them so that they will grow. We spend even more time with nutritionists, speech therapists, occupational therapists and developmental specialists...all to help our kids gain weight and grow. So when there is weight gain...it's a huge thing to celebrate!

I do understand that weight gain in the opposite direction is a problem as our kids get older, but we tackle that one when we get there. For now...WAY TO GO NATHAN!

Sometimes...

2009-12-08T11:49:00.000-08:00

Sometimes I find myself awake at night thinking about things that I'm sure I shouldn't be thinking about given the fact that I have been so sleep deprived. But they are there, they are real. I don't invite them in, but I can't just shut them off. So I entertain the thoughts until I drift off to sleep or my husbands alarm goes off meaning it's time to start the day.

Recently I have been plagued with the topic of what to do with Nathan when Jason and I are gone or no longer to care for him. O.k, I know some of you are thinking how ridiculous that thought is because he is so young. But the reality is is that we never know when that time will be. I have been told to not think too far out about Nathan's future because it just causes unnecessary worry and fear. Well, I am the mother of a special needs child and the reality is is that life is difficult, difficult every day. I do think about those things because I dream for my children, both of them. When I dream about Bella I see her as a confident individual doing whatever she sets forth to do...on her own. Able to make her own decisions (whether good or bad) and able to determine her own path. She will relish in her successes, learn from her failures and move about life as she chooses.

For Nathan, life will be much different. Our intentions are to have Nathan live with us his entire life if he is not able to live on his own. But what do we do for him when we are gone? I can't say that Bella will want to take care of him and have a live in brother the rest of her life either. Maybe she will, maybe she wont. I will never put that pressure or burden on her.

Will he have to go to a home for people with developmental disabilities? I can't imagine being pulled from my home and being told to live with a bunch of strangers who look, sound, smell, and act different. And what about the abuse that takes place in many of these homes? I have heard of the horrific acts that take place in some homes, especially with individuals that are non verbal. Other parents of adults with RTS have shared their heart breaking stories. Their stories are enough to anger me to the point that I fear for Nathan. I know this does not occur in every home, but the instances are higher than most want to acknowledge.

So sometimes...these are the things I think about in the wee hours of the morning. They are real, they need to be dealt with and just leaving them for a later time does not solve the problem. I need a plan, I need a solution.

Wordless Wednesday

2009-12-02T14:50:00.000-08:00

Jeepers Creepers!

2009-11-23T22:56:00.000-08:00

Hot off the press...check this out!

He's an official creeper!

Up But Not Over

2009-11-15T07:47:00.001-08:00

Nathan started exhibiting a fine new skill a few weeks ago. He goes thorough all of the steps we have taught him in physical therapy to get from his belly to his bottom...on his own. Check it out!

Push up from his belly to his hands.

On to his hands and knees.

Begin to shift weight to his right side.

Tuck the right leg.

Use arms to back himself up to his bottom and...

Yeh, he did it! Wooo Hooo!

Now on to other things. Nathan has never rolled from his back to his stomach on his own. Many have theories on why he is not doing this. Some say it hurts to roll over on his tube, others say he doesn't have the correct patterning, and others say he just doesn't want to. I say it a combination of all of them. With out Nathan being able to tell us, who really knows. I do know I work with him every day on it and it doesn't seem that he can get all of the way over once he is on his side. It takes A TON OF STRENGTH and the correct patterning to get all of the way over. And...since he has been through 4 surgeries and 7 (or 8) hospitalizations in his short little life he is lacking strength. So here are a couple pics on how rolling from his back to his stomach is going.

We will keep at it!

Wordless Wednesday

2009-11-11T07:42:00.000-08:00

Past Due!

2009-11-10T16:37:00.000-08:00

No, I'm not expecting again...

These pictures are just way past due but too cute not to post. Enjoy Miss Bee and Mr. Penguin (and their pumpkins)!

"Hey everyone, here's my pumpkin."

"My mommy thinks pumpkin guts make for good texture therapy. I disagree. This feels kind of gross."

"Mmm...it sure tastes good though."

Back to Life...

2009-11-04T16:24:00.000-08:00

Dare I say he's healthy again? I would officially call Sunday the 1st day Nathan has been absent of sickness since September 23. It's glorious. Some how, some way, he developed some new gross motor tricks while he was ill.

All of the sudden, he can get from his stomach, to all fours, and into the sitting position. Completely textbook. His therapists will be proud. He maneuvers around the living room with some crazy sort of scoot and pull method (not so textbook). It's not terribly fast, but he can get around short distances. I am so proud of him! He is interested in pulling himself up on furniture and tries to grab on to things, but he's not got enough strength yet. Poor little guy lost over two pounds while he was sick and I think it will take a while for him to get his full strength back.

His nutritionist put him on a calorie booster called DuoCal to help get weight back on. Boy oh boy has it worked. We just mix it into his food and he doesn't even know it's there. The main ingredients are coconut and palm oils. Nathans diet is over 50% fat right now. Crazy! The weight looks good and is helping him to grow back into his clothes (he got back down to where 6-9 month pants were falling off of his already flat bottom). I wonder if his nutritionist could hook me up with a "less calorie" formula that would allow me to eat whatever I want but cut the calories in half. Somehow every time Nathan gets sick or is in the hospital, I tend to put my nutrition on the back burner and I gain weight. With four surgeries and seven hospitalizations...I'll leave it at that.

I must say that this course of sickness has taken a toll on our family. We are absolutely PARANOID of germs now. I go through tons of antibacterial wipes a day. Nathan goes nowhere. I am even scared to take him to therapy but I will because he needs it. Poor Bella gets quarantined too because if she gets sick, Nathan gets sick.

I also want to say thank you to all of our family and friends that have helped out in one way or another over the past five weeks. You certainly helped ease our burden .

In addition, I want to thank all of my RTS blogging friends who have sent emails, comments, and text messages of encouragement. You know what I am going through and your support means so much!

Stay tuned for some cute pics...they are coming.

Sick Update

2009-10-26T21:17:00.000-07:00

Well, dare I say we are starting to get a little better around our house? We definitely are not completely well, any one of us, but we are better than we were a week ago.

This certainly has been a roller coaster ride that I am ready to get off of and never get on again.

Here is the time line:

Sept. 23 Nathan goes in for T&A surgery. Two weeks prior to that, Bella had a cough.

Sept. 25 Nathan is discharged from hospital. He developed a cough while we were there, but docs felt he was stable enough to send home. They didn't want him to stay and catch another virus (h1n1) while he was there.

Sept 27 Nathan develops fever. Bella's cough worsens. Go to doctor. Bella gets antibiotic for sinus infection. Nathan is put "on watch". Take him home his oxygen sats go into the 80's that night and we put him on oxygen (at home).

Sept 28 Back to the doc. for a recheck. Lungs remain clear, oxygen sats remain low. Continues to stay "on watch".

Sept. 29 My body hurts everywhere. I develop fever, difficulties breathing.

Sept. 30 I go to doctor. Diagnosis: Pneumonia. Nathan remains very sick. Fever, cough, vomit.

Oct 2. I go back to doc. Can't breathe sitting or laying down (I never get sick, literally!). Change antibiotics to a broad spectrum one... just in case.

Oct. 3 Nathan improves, but has lost weight. Is having difficulties eating solids. Still coughing.

Oct. 4 Jason gets sick...oh no. Probably bad sushi. I'm still sucking swamp water and coughing up sludge. No sleep is taking place in the Oliver house hold. Nathan's apnea is the worst it has ever been.

Oct. 5 Back to the doc to recheck Nathan. Lungs remain clear and oxygen sats have come back up.

Oct. 6-10 Nathan is clear of sickness and Bella's cough has gone away. I'm still coughing crap out of my lungs and have no energy.

Oct. 11 Bella develops a fever in the evening. My in laws were just over and we had no idea Bella had a fever.

Oct. 12 Brother in law informs us he tested positive for h1n1. Bella's fever is manageable. In laws call and say they have cough and respiratory problems.

Oct. 13 Nathan develops fever. Jason goes to doc for flu symptoms. I demand he get swabbed for h1n1 due to Nathan's health. His doc. doesn't swab him. I'm mad.

Oct. 14 Back to doctor. Bella has 101 fever, Nathan has 102.2. Jason is very sick with fever and cough. I'm still coughing. I demand Jason gets h1n1 swab from doc. Bella's fever gets higher in docs office. She is swabbed for strep. Skin is falling off of her fingers. Diagnosis: presumed h1n1. Nathan is swabbed for h1n1...not positive.

Oct. 15 Both kids remain sick, so does daddy.

Oct. 16 When will this end?

Oct. 17 Nathan develops a barking seal like cough, vomits multiple times, can't catch his breath, and his heart rate is above 190 for over 30 min. We call 911. Ambulance arrives and wont transport us to the children's hospital. I tell them to leave, I will take him. Our local hospital does not know how to care for him, they always have him transported anyway. It is a waste of precious time that Nathan doesn't have. I ask for a police escort up the freeway, they denied us. A few minutes later, we were in the ambulance, on the way to the children's hospital. We arrive at 2:30 a.m.

Oct. 18 In the ER, Nathan vomits green stuff. They fear the worst, malrotation. 5 xrays, two surgical teams, 3 specialist, and 12 hours later, no presumed malrotation. Presumed diagnosis: h1n1, croup, and pneumonia. He's admitted to intermediate care. Jason remains very ill and is not permitted to stay due to fever and cough. He goes home. My sister stays the night.

Oct. 19 Nathan goes down hill. His oxygen saturation is in the 70's and he is on 4 liters of oxygen. We are told that he will likely get worse and may develop staff infection and strep. This is what is happening to the kids on the floor that have h1n1. They explain that they will put him on ECMO only as a last resort.

I honestly didn't think my little buddy was going to make it. I have never seen him so bad.

After 3 visits from respiratory therapy and lots of prayers, Nathan miraculously turned around, he was a new little guy.

Oct. 20 He is out of the woods, but very weak. Official h1n1 came back NEGATIVE!

Oct. 21 We go home.

Oct.22 Cough worsens. What the heck? Oh yes, Jason remains ill and Bella's cough is back with a vengeance.

The rest is all a fog. Nathan is grossly under weight and he is aspirating his food. His SLP thinks that the food may be going up his sinuses. He normally eats 5 oz of food 3 times daily. He now pushes the spoon away and cries after two ounces.

Today Bella's cough is better. I am almost cough free and Jason thinks he just has a cold now.
Nathan's reflux has returned and is bad.

In all of this, Nathan has learned how to sign "happy" and has begun to say "nigh nigh" when it is nap time or bed time. It is the only sound he mimics, but it is beautiful.

I'm not sure which way is up, but I know I have a loving family and am fortunate to have each and every one of them in my life.

I'm ready for this train ride to stop. I'm tired of Holland today.

Again

2009-10-20T17:21:00.001-07:00

Wordless Wednesday

2009-10-13T21:51:00.000-07:00

Sick Baby, Sick Sister, Sick Mommy, Sick Daddy

2009-10-02T16:06:00.000-07:00

As if recovering from surgery isn't enough, Nathan is now sick. He has what his sister has, that I got, that daddy got. Bella's turned into a sinus infection and is now on antibiotics. She has been sick for 3 weeks. I started getting sick before Nathan's surgery and now have pneumonia. Jason is getting the same sickness added to the bad sushi he ate for yesterday and which is causing other problems.

Nathan has been to the doctor 3 times this week (his o2 sats have been low and we are keeping close watch for pneumonia), me twice, and Bella once. We have filled three prescriptions for me and one for Bella to the tune of....$200 in copays. Ouch! But I am thankful for insurance. I can't imagine how much it would be without it.

I have been in bed, unable to help much. I have not been sick with much more than a slight cold since before Bella was born. Maybe there was one small sickness, but I don't remember it. My everything hurt for 3 days, nothing helped. I could hardly breathe and hand no energy.

We have had family and many friends helping us out. My mom was here for 3 days during the day time, my sister came after work until bed time for four days, and a dear friend Jan, has taken me and the kids to the doctor and stayed here (even over night) for the past two days.

Prior to Jan coming, Jason had not slept more that 2-3 hours total for eight days because Nathan's nights are very difficult and he screams a lot. I went for 5 days without more than two hours total each night and about went crazy.

Oh yes, I can't forget to add that Jason has been working 11 hour days to get some projects finished that are due early next week.

I now know how difficult it is being a parent and being sick. I have been well introduced, probably more than I never needed. I am looking forward to the germs going away and staying away.

Now that I have given you my gloom and doom of sickness story, I have GREAT news. In all of his recovery and sickness, Nathan has finally learned the art of clapping his hands together! He has been giving high fives for months but now he can really do it. It's so darn cute and he is very proud of himself when he does it!

Home

2009-09-25T15:47:00.000-07:00

We are home! Yesterday was a day of ups and downs for Nathan. Some vomiting, more pain, and moments of wanting to play and a few smiles. Today is better. He is still in pain, but not as much.

We are pushing high calorie solids through his tube so he can keep up on his nutrition. He wants to eat, but it hurts. He does manage to eat 8-10 spoonfuls at a time though.

He has developed an ugly cough, but every doctor and every nurse said that his lungs remain clear. I hope it stays that way!

I can not wait to lay my body on my own bed tonight. It is so nice that we get to stay in Nathan's room with him, but the beds sure do take a toll on a persons body!

After this stay I have decided that I am going to create a children's hospital utopia. I know, this sounds strange, but what's not strange about utopia? I may market the ideas some day, you never know.

Recovery

2009-09-23T20:57:00.000-07:00

It's been a long day of recovery. Surgery was over at about 9:05 a.m. and his pain is just now under control, 12 hours later.

Surgery was successful but it revealed some other structural problems. Yuck.

We just need to get him recovered and home. We can deal with the new found problems later.

Preparing To Go In

2009-09-23T08:14:00.000-07:00

We kissed Nathan good bye at 7:45 a.m. Here he is, waiting and comforting himself with his blanket.

Night Before Surgery

2009-09-22T20:49:00.000-07:00

Well, here it is, 8:50 p.m. Nathan is in bed and Bella is off to Grandma's. This is an all to familiar occurrence around our house. The night before surgery.

I am so glad that Nathan is not old enough to understand or know what tomorrow morning at 7:30 a.m. holds for him. We will have to hand him over to the anesthesiologist and watch the doors close behind him as he is whisked to an operating table with his favorite blue blanket where he will be put under anesthesia, be intebated, and have an IV inserted . He will leave behind a worried mommy and daddy that will only hope that this goes by fast.

He will cry when he is laid down on the table, still awake. Will he feel safe? Will he wonder who all of the people are that are standing around him before he is completely out? Will they handle my child with love and care and try to comfort him?

Are there going to be complications this time? Will the surgery go smoothly?

When he wakes up he will be in a lot of pain. He will throw up from the anesthesia (he has every time so far) and be confused about where he is. He will be poked, woke up all through the night, and be in a strange, sterile hospital room. We will be right there with him, every minute.

For some reason I thought by now that we would be seasoned and the night before surgery would get easier. That is the farthest thing from the truth. For some reason it's harder. We grow to love him more and more each day, just as all parents do. The deeper in love we are with him, the harder it is to put him at risk.

We've done our research, advocated, educated and informed his surgeon about the risks involved with RTS. We now have to trust that everything is going to go well and Nathan will come out with improved breathing and swallowing and less congestion in his sinuses.

This is hard.

By Himself

2009-09-21T06:43:00.000-07:00

I've been waiting for this...he did it! All by himself.

I'm not sure how, but the cool thing is that he got there. He saw something, wanted it, and found a way to get there.

I was busy unpacking from our weekend at the coast and set him on the floor, away from the "dangers" of the t.v. A short time later this is where I found him.

He was pulling DVD's and CD's off of the t.v. stand. Did he scoot? Did he get on his hands and knees?

I will never know. But what I do know is that this was an amazing moment that I will remember forever.

I wonder if he will try pulling himself up next. I'm not sure a glass stand is the safest place to do this. Time to get the bumper pads out!

Progress, Surgery, and More

2009-09-17T11:19:00.000-07:00

I've not been a consistent blogger lately because I simply have not had much time. I do go about my day thinking, "I should blog about this" when my kids do something cool. So I'm going to get back to the boring, type A list to let everyone know what's been going on. I don't have cute pictures to attach this time, but I will bring them back!

Nathan's new skills:

- He is crawling/scooting backwards across the room.
- He started signing "diaper" today every time I changed him.
- He's identifying colored shapes (with the exception of pink) with 80% accuracy .
- When he doesn't like a book that's being read to him, he will close it and look over to the book pile for a different book.
- He can get into the crawling position when he's on his stomach. He just can't get from his back to his stomach on his own.
- He can pull himself up to his knees from the sitting position.
- He can stand up with his back to a couch with nothing in front of him. But when he falls, someone needs to catch him because he will fall hard!

Other Nathan news:

- Surgery is scheduled for the 23rd to remove his tonsils and adenoids.
- His reflux got out of control for about two weeks. His omeprazol was increased to 30 mg. daily which exceeds the recommended pediatric amount, but it seems to have made a positive change.
- His OT is going to try the "brushing" method on him next week for his sensory aversions. Hopefully this helps!

Bella news:

- We have been homeschooling a little this week. I'm not following a particular curriculum, I'm just using my experience as a teacher and doing some writing and literature activities with her.
- She wrote the word "dot" on her own the other day. I heard her sounding words out in the front room and walked out to see what she was doing, and she had written the word "dot" correctly.
- We are hoping to get her started in violin lessons this month. We just need to work it out for someone to watch Nathan.

Until next time!

War Has Hit Home

2009-09-11T22:34:00.000-07:00

Marine 1st. Lt. Michael Johnson

Dear Michael,

Although I never got to know you in depth, you married one of my sweetest and dearest, life long friends just two years ago. Shortly after she graduated from OSU, you married her and whisked her off to Okinawa, Japan to begin your short military career. I know you viewed the military as a stepping stone to a bigger career with the United States Forestry Department but you served our country with your whole heart and soul.

The times that I talked to Durinda she said that she felt like she was on an adventure and was loving her life with you. I know that she got lonely while you were on your training missions, but she adapted and made the most of it. I know you took good care of my dear friend because she always had incredible stories to tell about all the things you were doing together over in Okinawa.

On Wednesday of this week I got word that your life was cut short by an enemy sniper as you were on duty in the most hostile area of Afghanistan. At first I didn't know what to think. It didn't seem like it could possibly be real. You had only been their a little over two months. It just couldn't be you. My young, beautiful, ambitious friend couldn't have lost her husband of two years at such a young age. You two had the world in front of you. You were perfect for each other. She couldn't be widowed so early in life.

After reading report after report and talking with Durinda's family I now know it is real. I can't imagine what it was like for you in those moments. I can't fathom what you were feeling, thinking, and experiencing. What I do know is that you are a hero. You sacrificed the greatest thing any one has to offer, their life for their country. Michael, there are no words to thank you enough for your sacrifice. From today forward every time I look at the American flag, I will be reminded of you. I will share your story of bravery and heroism for years to come.

I know you are now climbing the beautiful mountains of Heaven, enjoying all of the beauties of the outdoors you enjoyed here on earth, but in a greater array. You are whole, you are free, you are loved, you are missed.

I now turn my grief to anger and pray that this war ends soon. No more lives need to be lost, but inevitably they will. There needs to be resolution so that another, young bride is not widowed. I pray for protection over every man and woman fighting for freedom's sake.

You can read more about Marine 1st Lt. Michael Johnson at: http://blog.oregonlive.com/oregonatwar/2009/09/marine_1st_lt_michael_johnson.html

My Beauties

2009-09-04T16:27:00.000-07:00

An afternoon walk downtown afforded these sweet pictures of my beauties. No words needed.

Healing, Surgery, and Self Stim

2009-09-02T08:00:00.001-07:00

Nathan is showing signs of getting better. He is still coughing a little at night, but I think that is due to reflux more than anything.

Surgery to have his tonsils and adenoids removed is scheduled for Sept. 23. Scheduling surgery is a very uneasy feeling. I have been told by several people that a T&A surgery is simple and we have nothing to worry about. However, with Nathan, it's different. His doctor told us that he will most likely be put in the ICU after surgery and spend 2-3 nights in the hospital. The space in which the doctor has to work in is extra small in addition to the possibility of his airway collapsing (an RTS thing). Surgery has been hard on Nathan, it's just plain out scary.

Nathan is beginning to show lots of signs of self stimulation behaviors that concern me. He shakes his head rapidly back and forth, flaps his right hand, bangs his hand on everything and bites any and everyone that he can sink his teeth into. He has also lost his cute, charming smile. It's very hard to get him to smile these days. I talked to his developmental pediatrician last night and he said these could be signs that he is in pain. My gut feeling tells me this is a part of the RTS behaviors that a lot of kids have. I am convinced it is side effect of casien and gluten. We have given Nathan very little gluten, but tons of casien because goat milk is the only thing he has tolerated. We are working with his nutritionist to figure out something else for him. Hopefully we will see his charming smiles again soon. I miss them.

Beach, Ponies, and Sick Baby...Again

2009-08-24T07:42:00.000-07:00

Last week my mom, sister, niece, Bella, Nathan and I went to the beach for two nights. We stayed in a beautiful condo that overlooked the ocean. My sister found an ad on Craig's List for this particular condo and ended up talking in length to the owner. She asked who was coming and what we were going to do. My sister told her that it was for a little respite and somehow Nathan came up in the conversation. She was very interested in Nathan's story and ended up reading our blog. A short while later she called my sister back and offered her condo to us for free because she felt like it was a way to contribute to our family because of Nathan. We were floored to say the least. There really are amazing people out there and Ms. Mellinger is one of them. Thank you so much for your generosity Ms. Mellinger.

On Saturday I got a call from a former co worker telling me that there were free pony rides for families of children with special needs on Sunday in a small town about 25 miles away. We headed out there and had an amazing time. Bella got to pet ponies and ride a big horse. She also got to do crafts and listen to a story. She LOVED it. Nathan got to pet the ponies as well. He did super! He grabbed their manes and tried poking their eyes. Can you believe we forgot our camera? So once again, thank goodness for the trusty ol' camera phone.

Now some not so good news...Nathan is sick again. This time I think it is going to lead to pneumonia. How do I know...well, when we hooked him up to his oximeter last night, he was at 90-91% oxygen (he should be at 100%). That means his lungs are plugged up. He's still sleeping, so time will only tell what we will do for him today.

How did he get sick again? Oh yah, I know, from his darling, big sister. She played down on the beach and got too cold and developed a cold on Thursday. As always, two days later, Nathan got it. This time it's bad.

He has been sick every month this summer and germs are not even bad right now. I am so fearful for the sick season. I'm also so stuck on what to do about Bella. We are not sending her to Preschool because of germs and brining them home to Nathan. Yes, Nathan will get sick if Bella does. The track record so far is 100%. I can't continue to keep her in a box though. I'm not worried about academics (I'm a teacher :) ) but I am concerned about interacting socially. She loves to be around other kids! On the other hand, Nathan can not afford to be sick the entire fall and winter. He is never going to develop if he continues to be sick. It seems like he just about gains a new skill and then gets sick and set back even further.

So this is what we've been up to for the past week! Thanks for checking in!