Wednesday, December 21, 2011

Time Flies...and A Little Flashback

Merry Christmas & Happy New Year to everyone! 

Milo sat on Santa's lap without crying this year!

I can hardly believe how fast the end of this year has gone by!  Milo turned 5 about 3 weeks ago and I haven't found time to post the pictures from his party but I will try to get to it after the new year.  We are heading out to visit family for the holidays and it looks like the weather might be a challenge causing us to leave a bit earlier than planned.  Milo and I have tickets to ride the Christmas Train with Santa in Canon City and a snow storm approaches, such is life in Colorado :0)

I thought I would leave you with a quick little video of Milo exactly 5 years ago.  He was only 3 weeks old, still had a feeding tube in his nose, a breathing tube in his mouth and hooked up to the ventilator.  He was also under the influence of several strong drugs, in fact he was only allowed to "wake up" earlier in the week (he had been sedated and not allowed to move since birth).  Milo has come such a long way in the last 5 years and is definitely proof of the Miracles that God performs!  

Friday, September 23, 2011


In celebration of the first day of autumn we went on a walk at a nearby "nature area" and I snapped some pictures of Milo.  The scenery doesn't look too fall-like and the temperatures have been warm but comfortable.  I really do enjoy this time of year.  Enjoy our adventure!

I love how this one turned out,
the colors are fantastic & the ripples in the water add a special touch. 
He tossed rocks into that stream for a long time :0)

And my personal favorite image 
from this morning~~
he's growing up way too fast...he turns 5 in only two short months!

Wednesday, August 24, 2011

Not Your Ordinary School Supplies

These are Milo's School Supplies for this year:

Not what most kids load their backpacks up with on the first day of school!  Into his backpack went an allergy safe snack in case the class snack is not safe for him, benedryl, g-tube extension, and extra g-tube in case his get pulled out or falls out, and an epi-pen for severe allergic reactions.  Not pictured was the standard pre-school extra set of clothes and a water bottle (which I forgot the first day of school).  At least we could leave the Pull-ups and wipes out of the backpack this year!   Ahh, the joys of a special needs kiddo :0)

Tuesday was Milo's first day of preschool this year.  He has the same teacher as last year (yeah!) but most of his therapists will be new to him this year (bummer).  Milo was so excited about going to school yesterday, he asked every 10 minutes if it was time yet.  He is in the afternoon session so let's just say it was a long morning but finally it was time to pull on that brand new first day of school shirt and put on those brand new, won't be white for long, light-up Toy Story shoes then grab the backpack and head out the door.

Come on MOM!  It's time to GO!!

OK, I'll stop long enough for you to get a picture, but can we GO now?
 We got to school and he started to fall apart a bit.  In the parking lot a little girl from his class year greeted him and he cried.  He wasn't sure about all these new kids on the playground and it was so hot you couldn't touch the play equipment.  His teacher opened the door and he didn't want to go in, he knows the routine but was stubborn.  The classroom was filled with noisy kids and camera happy parents, not an environment where Milo flourishes best.  When it was time for me to leave he bawled.  I know he stops as soon as I leave so I left him screaming in the arms of his physical therapist.  At pick-up his teacher told me he had a WONDERFUL day although she had to carry him to the door (not unusual, he'd stay longer if he could).  I think the best part of yesterday was when he was telling me about his day at the dinner table :0)  Last year he didn't really have the verbal skills or attention span to carry on a conversation like that.  He played in block area & had to share the toys.  They went to the gym for recess because it was too hot outside (a fact confirmed by the principal in an e-mail) and he played tag with his teacher.

His second day at school was a success, no tears and a great report at the end of the day.  The classroom was pretty chaiotic at drop-off today too but he held it together.  One little girl was crying so hard she threw-up in front of the cubbies (another one of those reminders I'm thankful that Milo can't puke).  The teacher was tending to her and the aide was trying to get ahold of the nurse and gather cleaning supplies.  Another little boy was having a melt-down about his mom leaving too.  I was proud of Milo for not crying without someone to guide him, he did seem a bit "lost" but he did great.  He even walked to the door by himself when I picked him up, ahh he is growing up :0)  On the way home tonight he told me that "house area" was closed today (where the kiddo left her mark) and so was computer.  They played in the gym again :0)

I hope this continues...

Saturday, July 16, 2011

What Time Is It?

Waiting "patiently"

IT'S SIGNING TIME!! Live in the park! Today Milo & I went to a fabulous park in Highlands Ranch to watch Rachel Coleman from Signing Time perform. Luckily the performance was between 2 thunder/rain storms, quite a feat considering our crazy monsoon season this year :0) We got there early and had to wait sitting on the lawn.  I was doubtful that this method of waiting would work but Milo did very well, I only had to chase him once!

Doing the "Hopkin's Hop"

I think the best thing about this gathering was the diversity of families that attended. There were deaf/hard of hearing kids (I saw more cochlear implants than I could count), trach kids, kids in wheel chairs, kids on oxygen, kids with Cerebral Palsy, autistic kids, Downs Syndrome kids, and oh yeah typical kids too. No one stared, no one made faces or rolled eyes when kids ran around crazy or screamed, no one blinked when Milo lifted his shirt and showed off his g-tube (in fact a kiddo sitting on the blanket next to us had one), everyone seemed to understand. We met a mom and her daughter who sat next to us, the little girl had a trach & the mom quickly spotted Milo's stoma scar so we talked "trach" for a few minutes.  When Signing Time was created I doubt Rachel and her family had any clue about how many families she would help.  Even though she has two special needs kids (one deaf and one with spina bifida & cerebral palsy) I suspect that the success of Signing Time within the special needs community was beyond her expectations.  You see, Milo learned his signs from watching the Signing Time series over and over and over.  He would never "practice" with the videos but when he suddenly started signing, it was an explosion of language for him.

Up Close...

This show was so family friendly. They asked the kids to come up right in front of the stage to sign, sing & dance. I wasn't so sure Milo would get that close but he did. We started out at the back of the group and ended up right at the stage so he could be close to Hopkins the frog.
That frog is "humongous"

Rachel, host of Signing Time, and Hopkins, the mascot

Rachel sang and signed many of the popular Signing Time songs, she had kids come on stage to help her out and Hopkins even signed the songs.  Quite a feat for a person in a frog costume.  Rachel also taught us a few signs that didn't make the cut for the videos such as "tantrum" and believe me that one will come in handy :0)  She also told us that they just filmed a new Signing Time about potty training and they are coming out a very cute app for it providing positive reinforcement.

Dance (and sign) Party!

For one song (Turtle Rock, which happens to be a favorite of Milo's) she asked the kids to get up and dance.  Well quite a few took that as an invitation to come up on stage with her so she invited all the kids up and had a great dance party while singing and signing.  Milo took the opportunity to get up close to Hopkins but he wasn't so sure about all the other kids running around.  I picked him up and Hopkins patted him on the back, that made for one pretty happy 4 year old once he escaped the crowd.

Checking out Hopkins...

Rachel is a bit "over the top" in her acting on the videos but it captures the kids attention wonderfully. She even made fun of herself during the show!
Rachel and Hopkins braving the heat.  The hat & flip flops
are not a normal part of her wardrobe for shows.

Milo did very well and sat for the whole show with the exception of one break to get cold water, it was crazy hot sitting in the sun.  I can't image how Hopkins lasted as long as he did in that costume!  He did take a break at the end and Milo was concerned he wouldn't be back.  But no fear, Hopkins was back at the end for the Meet & Greet session.  We waited in line to take pictures with Rachel and Hopkins and finished up just as the rain started sprinkling again.  Milo certainly wasn't going to say hi to the frog on his own so I got in the picture too (as I said it was hot so I looked a bit weary).  Rachel was super nice and autographed a t-shirt I bought for Milo.

Sharing a little "I love you" in sign :0)

Tuesday, June 7, 2011

It's Summer Time!


The grass is a vibrant shade of green, the colorful flowers pots are sporting new flowers and the flower beds are showing off their beautiful colors and textures.  The air conditioners have resumed there appointed positions in the windows of our house as the rising temperatures have signaled the beginning of summer.  Not to mention that Milo has been out of school for nearly 4 weeks already, that doesn't hardly seem possible.  His last day of preschool was a bit bitter sweet.  He has learned so much this year both academically and socially and it was in no small part to his wonderful teachers.  During the last hour of class the parents were invited for a small celebration and presentation of certificates.  Of course Milo was the only one who wouldn't sit still or participate in the songs but there were no meltdowns so I considered it a success.  He played with his classmates and posed for pictures.  He didn't really understand the whole "summer break" thing and still asks about going back to school "tomorrow, please". 

During the summer I hope to accomplish some goals with Milo:
1.  Potty Training
2.  Following simple rules without meltdowns
3.  Stop throwing everything that is in arm's reach
4.  Walk with me holding hands in stores, parks, mall, etc.
5.  Stay near me in stores without holding hands or being in a cart against his will
6.  Be in the kitchen without playing in the water or constantly having the fridge door open
7.  Eat a wider variety of food (this kid won't eat fruit or veggies)

I am happy to say that #1 is going very well and there is no longer a need for diapers or pull-ups in this house!  I'm not saying that he doesn't have accidents or that he is independent in the bathroom but he is doing incredibly well.  He was finally ready and I found a way to bribe him.  Finally something he cares enough about to work toward a goal.  Unfortunately the "bribes" are a bit more than an M&M each times he uses the potty but bottom line is I'm not changing dirty stinky diapers anymore :0)

#4 & #6 are definitely works in progress and don't always work but the majority of the time he will hold my hand and the baby gate blocking off the kitchen has been removed.

Of course what is summer break without some fun!  My plan is to get him out of the house and do fun activities a couple of times a week.  So far that has mostly involved going to the park but I also hope to take him to the aquarium, the Wildlife Experience, Tiny Town, Swimming Pools and maybe even a movie or two.  Anybody have any other ideas of fun outing with an active 4 year old?

Thursday, April 28, 2011

Allergy Treatment (NAET) Update

Milo has now had 8 treatments!  In the eczema department I'd say it is overall improved but he definitely still has his fair share of outbreaks.  This spring seems to be especially hard on him so I am thinking he may have some environmental allergies (pollen) as well.  He has been treated for all his diagnosed food allergies except for soy but there are more foods I suspected he had a sensitivity to as well.  He is still itchy off and on, he has eaten a goldfish cracker and a Fruit Loop without any huge reactions (he's such a sneak) but I'm not encouraging him to eat those type items yet :0)  Just the fact that he wants to is encouraging to me, before he was never interested in such items.  I've created a page that I'm documenting each treatment and how the following week goes, just click on the NAET tab just under the Milostones banner.  The end of March Milo also saw his MD allergist.  We hadn't seen him for about 2 years but he did repeat the blood tests earlier this year (before NAET started) and we were able to get the results.  Overall his numbers looked better, still high but not nearly as bad.  This summer we will go to National Jewish for a food challenge to oats to see if he is safe to eat them.  He has passed the oat NAET treatment so that coupled with the lower numbers on the blood test I hope to add that back into his diet.

The most exciting thing has been a positive change in Milo's behavior.  Now I can't say for sure that NAET treatments are definitely responsible but the coincidence is too much to ignore.  NAET is an energy balancing procedure so it is possible he just feels better all around.  For the most part he is calmer, more cooperative and generally a bit happier.  Now don't get me wrong he still has his moments and certain things still set him off but I definitely see an improvement.  Christmas was a nightmare, he was not happy the whole time we were in Alamosa.  His favorite phrase was "go home..." We were also there in February and after 24 hours he was crabby and "wanted to go home".  Fast forward only 2 months and 8 NAET treatments...Easter weekend...I was bracing for a crabby, uncooperative kiddo.  Amazingly he only had about 2 meltdowns and those weren't even all that bad.  He participated in an Easter Egg hunt on Saturday and although it started out with a tantrum he eventually caught on and enjoyed himself, in fact, we had to drag him away from the host's house.   He sat through a whole church service (ok, so he slept through half of it) however he was not excited about sitting down for dinner with the other 24 people at my Aunt's house for Easter dinner.  I never once heard "go home" and when we did leave he wasn't really ready although he didn't resist.  AMAZING!  His teacher at preschool has said that the last 2 weeks in particular have been great.

So while I can not say for sure that the allergy treatment are absolutely working just yet you can bet I will continue to take him for more!

Friday, April 1, 2011

April Fools!

April 1st is a very significant day in our lives.  On April 1st 2007 Milo was flown Flight For Life to Children's Hospital in Denver (for the second time) and in a matter of weeks ended up with his trach and ventilator.  I was not impressed with his April Fool's Day antics!
April 1, 2007 at The Children's Hospital

And one year later on April 1st 2008 Milo was finally able to COME HOME after 365 continuous days in the hospital.  pril Fools Day 2008 did start out with a little prank, but it was for his nurse :0)  The night nurse left his old broviac in his crib with him (it had been repaired the day before) for his day nurse to discover in the morning.  It did make her heart skip a beat!

Proudly displaying his "old" brovic parts
By lunch time we had finally left the hospital.  It was a bitter sweet moment, we made some wonderful friends during the past year.  There was a whirlwind of activity at our house that day but Milo did wondful and we were on our way to start the next adventure.

Napping in his very own crib for the first time!

So I am perfectly fine with April Fool's Day being a nice calm day with no big hoopla, good or bad. Knowing my onrey guy it's only a matter of a few years before April Fool's day pranks begin but this time just pranks please, ok Milo?!

March 31, 2011

Wednesday, March 16, 2011

Allergy Cure?!

While hopping from blog to blog earlier this year I came across a novel treatment for allergies.  I was immediately intrigued and had to investigate further.  The treatment is called Nambudripad's Allergy Elimination Technique or NAET. The NAET treatment uses a blend of medical knowledge and practices from chiropractic, acupressure, kinesiology, allopathy and nutritional disciplines.  This therapy is a way of reprogramming the brain to accept substances that it had previously identified as harmful or toxic.  The result is allergy elimination.

That first night I spend hours researching this too good to be true answer to Milo's food allergies.  I found the official NAET website which describes how it was developed and the treatment process.  I found many blogs of people who had wonderful experiences for themselves or their children with this therapy. The next day I went to library and check out Dr. Nambudripad's book "Say Goodbye To Illness".  I will honestly say the diagnosis and treatment does sound kind of suspect in the context of our familiar western medicine concepts but are widely accepted in Eastern medicine.  That first night (late at night), I texted my friend Liz, who is an acupuncturist, to find out if this was for real or some kind of "to good to be true" scam.  I talked with her the next day and while she had not heard of this specific method by name she did know several practitioners who did successfully treat allergies in a similar method. I can not tell you how excited I was at the prospect of getting rid of Milo's food allergies!

The NAET website has an extensive list of practitioners who have gone through the training.  I located an experienced acupuncturist in our area.  After talking with her about Milo and his medical challenges as well as his allergies I set up Milo's first appointment the very end of February.

So what happens during these treatments?  I'll try to summarize it for you the best I can.  Each week Milo receives a treatment for a different allergen which is part of a series called the Basic 15 which he has tested as having a reaction to.  These are 15 most common allergens that should be cleared before others, the theory is that clearing these 15 will strengthen the body and immune system to better receive the following treatments. 
Each treatment begins by conducting muscle response testing.  Muscle Response Testing or MRT is a testing technique based on kinesiology to test allergies by comparing the strength of a muscle in the presence and absence of the allergen.  Because Milo is young and generally not cooperative, I serve as a surrogate for the testing.  The allergen is in a small glass vial which I hold against Milo's skin with my hand and the muscle response test is performed on me.  As long as I remain in skin to skin contact with Milo, his results are transferred through me.  Sounds weird I know but it really does work.  When an allergen or combination of allergens is identified the treatment can take place. 

I serve as a surrogate for the treatment as well, as long as I remain in skin to skin contact the treatment is effective in him.  The allergen in the small glass vial and placed against Milo's skin and I remain in skin to skin contact with him, normally my hand on his back under his shirt.  The doctor then uses chiropractic and acupressure techniques along my spine to bring the body's energies into a state of balance. She also stimulates the acupressure points on his back.  It is said that by doing this, NAET is capable of erasing the previously encoded incorrect message about a specific allergen and replace it with a harmless message by reprogramming the brain. 

For the next 10 minutes the vial(s) are placed in Milo's sock so they remain in contact with his skin to reinforce the treatment.  He can play during this time as long as he doesn't get too crazy.  For an adult it is supposed to be used as a time of meditation.

Milo must then avoid that specific allergen for the next 25 hours, here's why. There are 12 major energy pathways (meridians) in the body. Energy molecules take 2 hours to pass through one meridian when there is normal energy flow. During the NAET treatment, the normal energy flow of the molecule of the allergen is established through the energy pathways. If the energy molecule can complete its travel without interruption and return to the original starting point in 24-25 hours, the uninterrupted journey of that energy is imprinted in the brain as harmless or beneficial energy.

We return a week later so that Milo can be checked with MRT to see if the allergen has cleared. If the allergen has not cleared the treatment will be repeated.  If the allergen has cleared we move on to more MRT testing and will treat the next allergen.

I found this video of a NAET treatment session, it is similar to Milo's treatments.  The instrument used on this child's back is what Milo's practitioner uses on my back and she uses more of a gentle massage type technique on Milo.

Many of the blogs I found described using NAET to treat Autism.  The theory is that autism may be allergy linked.  The testimony on these blogs is encouraging to me.  Milo doesn't have autism but I'd say he has some tendencies, especially the sensory problems, just not to the same extent.  I am hopeful that this treatment will also have a positive effect on his behavior and attention to tasks in school. 

There are 15 basic essential nutrient treatments that each person must be tested for and receive treatment for if necessary. Many of Milo's known diagnosed (by an allergist) allergies are within these first 15 treatments.  During the first session I had the practitioner muscle test Milo to some foods I suspected he had an issue with and sure enough, he is sensitive to tomatoes, flax and chicken.  He was also still sensitive to corn and dairy products which he has successfully passed food challenges to at National Jewish.  We are currently on Milo's 3rd treatment, so we still have a long road ahead of us.  So far Milo has been treated for eggs, dairy & sugar.  Yup he's sensitive to sugar, guess that's why he doesn't like sweet things very much!

I have already seen some improvements!  By the end of the first week Milo's breathing became totally silent for the first time in over a year and has remained that way.  He always had a gurgle in his throat, secretions that he just wouldn't clear without me prompting him to cough.  That noise is gone!  His skin was much softer the first week but last week he was itchy again.  I'm not concerned, huge changes are not expected right away :0)

Here are some of the websites/blogs I found that had wonderful information about NAET. 
NAET website
Warrior Mama
Extinguishing Eczema
Owen's Journey -- NAET journey starts January 2009

If you have any questions let me know in the comments and I'll try to answer them to the best of my ability.

Wednesday, March 9, 2011

It's About Time!!

I'm sure that's what you are all saying and I don't blame ya!  Really life has been pretty uneventful around here.  There was Milo's 4th birthday and Christmas that I missed blogging about (oops).  I learned that Milo is very much into routine so changes that occur with holidays are stressful to him.  We did have some good experiences this last holiday season but there was some icky behavior to deal with too.

Milo is LOVING school this year.  His teachers are great with him!  He is talking all the time (even when he is supposed to be listening) although he can be hard to understand sometimes.  His pronunciation is the area he needs the most work in.  His little lips and mouth just can't quite figure out how to make some sounds but he's getting better every week.  He recognizes and names all his letters and numbers 0-9, can spell his name, knows his colors & shapes, recently learned to cut with scissors and is learning to write his name.  His IEP review meeting and Parent/Teacher conferences are next Tuesday and I am eager to hear what everyone has to say.

It's the time of year to check-in with most of Milo's doctors.  He had a cardiology appointment in early February and for some reason he hates that department and screams the entire time so he earned himself a cardiac MRI under anesthesia to check on his heart and pulmonary arteries.  That will be done mid April.  His cardiologist feels he is doing well she just wants to be proactive and the MRI will give them a better understanding of his unique anatomy.  Today he had a pulmonology appointment and Dr. D was more than happy with how his lungs & airway sound.  She will take a quick peek of his airway with a flexable bronchoscope just before the MRI while he is sedated and if everything looks good we'll be talking about stopping one medication, reducing his steroids and maybe even getting rid of our home oxygen, BIG steps!  The MRI might also be able to give us good view of the repaired portion of his trachea, BONUS.  In January he saw an endocrinologist for the first time because his bones have osteoporosis but no big answers there, not a suprise, just another wait and see.  He saw the dermatologist because I thought he might be getting warts on his arm again but the doc assured me it was just bad spots of eczema and to put stronger steroids on them, I've done that a couple times but they seem to be fading on their own.  ENT only wants to see if there is a problem so we get to skip seeing her for now.  I think that brings us to allergy.  I asked to have his blood tests repeated to see if the numbers had gone down after 3 years of avoiding major catagories of food.  His numbers have come down significantly so that is wonderful news.  The appointment with Dr. A isn't until the end of March but I called to check on the results :0)  Hoping for some food challenges this summer and Milo being able to eat some new foods.  On the topic of allergies, I found a method of potentially eliminating allergies using accupressure techniques that sounds very promising.  Milo has had 2 sessions with an accupuncturist (no needles though) and so far I've seen some positive results with him.  I promise to write more about this soon, it deserves an entry all to itself!

If you have made it this far I wanted to share a couple of photos with you.  Four years ago this week Milo spent his first week outside of a hospital.  It was short lived, just 7 days and some of those were not a ton of fun.  I did get some great pictures though!

March 7, 2007

And here is his school picture from this year.  He looks so big and I can't believe they got him to pose like that!

I just love looking at these photos, it makes the chaos of the 4 years between them SO worth every moment.  Thanks for checking in on us!