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?

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!

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

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
4fordsblog

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

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!

Decisons, Decisions...

It's that time of year again to start thinking about Christmas cards.  I contemplated making my own cards this year but in an effort to simplify our holiday season I settled on the ever popular photo card.  Now comes the hard part...Shutterfly has so many new and wonderful cards this year, I'm having a hard time choosing a design!  Ususally I pick out a card and make sure to take pictures of Milo that complement the style and colors.  So off I went to choose a card (click here to see the many choices) do I want folded cards, flat cards printed on heavy cardstock, cards printed on photo paper, 4x8, 5x5 or 5x7 and then there is the style; traditional, religious, contemporary, full of color, few colors, oh and how many pictures, they have styles to accomodate between 1 and 6 photos.  After a long debate with myself I have decied on this style, but who knows, we'll see after I take the Christmas pictures of Milo :0)  One of my favorite things about the cardstock is that it is made from sustainably forested trees.

Why Shutterly you might ask?  I have always recieved wonderful quality in a timely fashion from them.  My favorite Shutterfly project was a photo book I made about Milo's medical story.  I wanted to remember the whole story and be able to share it with others.  The book I recieved was wonderful!  So professionally printed and bound.  So far I have ordered 3 hard back copies, one for Milo, one for me and one for my mom.  I am contemplating making another one that is geared toward preschool/Kindergarden age for Milo.  I also made some small soft back photo albums for my nephews and niece of their vacation time with us.  They were a hit!  Shutterfly makes it easy, choose simple path and they will do most of the work for you or fully customize the book yourself (my choice because I'm a bit of a control freak).  I have also made calendars and photo mugs for Christmas presents that have turned out beautiful.  They also have greeting cards for about any occasion.  I especially love the cards who's proceedes benefit the American Lung Association, Heifer International, and LIVESTRONG.  I just saw graduation announcements too, for everyone from preschool graduation to college graduation!

Oh and if you have a blog and would like to earn free holiday cards from Shutterly click here to learn how.  Even though I wrote this post to earn some fabulous free cards, everything I have said is absolutely true :0)  I really do love Shutterfly!

Trick-Or-Treat!

For Halloween this year Milo had laryngitis, his poor little voice was hoarse and squeaky.  Since he seemed to be getting sick we didn't venture down to Alamosa as we had planned.  Airway swelling + higher altitute = nervous mommy.  For two years in a row now we had planned on trick-or-treating with his cousins but again our plans didn't quite pan out.  The good news though is that Milo never got horribly sick, no fever just some extra chest junk but he handled it quite well.  We ended up going to Boo at the Zoo on Sunday for some trick-or-treating and that was more than enough for Milo.  He was nervous about all the people in costume at first but by halfway though the zoo he felt better about the whole situation.




Milo's Loot



Eeyore at the Zoo



 

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Noel (Elmo), Faith (Snow White) & Milo playing in the corn

The middle of October we had a Trach(less) Kids Halloween Party...we only had one kiddo with a trach but 3 that used to have trachs.  We had a great time, the kids were super cute in their costumes.  I put dried corn in Milo's water table and it was the hit of the party.  The kids loved digging in it, filling containers & finding spiders, bats & skeletons that were hidden.  Not long after everyone left Milo had the whole thing emptied on the ground...we will have the fattest squirles in the city :0)

Jen & Faith (Snow White), Janay & Milo (Eeyore), Tina holding Noel (Elmo), Lily (mailbox), Dustin holding Landen (horse) & Marissa (Minnie Mouse) and Jeremy

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Owen, Milo, Brett & Dylan



The beginning of October Milo's cousins came to visit.  We went to the circus which Milo didn't like all that much, it was crazy LOUD.  The next day we went to Nick's Garden Center for their Fall Festivel.  It was the first weekend so there were not many people which worked out great.  The kids played in a hay maze, jumped in the inflatables, played bean bag games, rode a train & had their faces painted.  It was a great time!







Milo the kitty