MERRY CHRISTMAS!

Yep, it's Christmas time.  I'm starting to feel it a bit, but its tough to enjoy this time of the year when you know that starting the first of next year a Simon marathon will begin.  We're hoping for answers, solutions, something but along this journey I think we've learned to not hold our breath.  He's a quirky little guy and his body works a little different, it is what it is.  But alas we have to try, we never stop trying to give him every tool possible to help him be the best he can be and be in the best health he can be. 

Christmas presents for him have taken a different approach from us this year.  He's getting the fun stuff from grand parents, from us he's getting a cool dinosaur humidifier.  Still very kid cool but also practical.  Sometimes I think we try so hard to treat our SN kids like everyone else that we miss the mark a little bit of accepting them as they are and embracing what some of those differences are.  He could care less about most toys.  A humidifier will be a big boost to his oxygen challenges, i.e. keeping his nose from getting irritated from the cannuals.  I think treating him like a kid is great, but I think its also important to remember to accept him just as he is and if he would love a card for Christmas, then get him a card, why spend $50 on a toy he won't play with?  We're all different, different things bring us pleasure so if we want to be honest the stress we have over how much we spend on someone when instead a truly thoughtful gift would do the job and bring you and the person receiving the gift from you; why strive for anything else? 

Those are my random thoughts.  Take them for what you will. Merry Christmas!

Simon's Hands

I have started a new blog to showcase the paintings Simon and I are creating together.

http://simonshands.blogspot.com/

And Life Goes On...

Well, I did it.  I signed up for the Ogden Marathon.  Eek!  I found out I have a heart arryhthmia(sp), hypoglycemia and low blood pressure a few weeks ago and my ECHO is the 9th but I knew this marathon would sell out if I didn't sign up so I just went for it.  I imagine I should have everything sorted out by then and worse case will just have to not run it.  That I just don't see needing to happen though so I'm optimistic, excited and nervous!  Its a beautiful run though, Dave and I drove the course Sunday. 

My cute Simon has gained 4lbs!  I have to call the nutritionist and see if we need to reduce some of his calories.  Man oh man!  He's heavy and tall.  We've been very informally exploring growth attuneation(sp) as a possibility for him.  I probably better make the appointment to discussing it fully with an endo soon. 

Did you know hearing aids are crazy expensive and if you're born with a hearing loss insurance won't pay for it; except Medicaid, which we don't get sooooo; Simon won't be hearing for awhile until we get that sorted out.....

How is this for random thoughts?  We're still in limbo on all of Simon's stuff until the sleep study.   Our lives are me, running and Dave music and both of us as much sleep as we can fit in! 

The boys are living life day to day and nothing terribly new going on except we will have another driver in our home here in a few weeks....

Simon's Halloween costume was a hit.  I'll have to figure out how to include a picture.  Its sad that I don't know. LOL

Emergency Prepare

If you do food storage or just prepare in general there is a great giveaway!

http://beprepared.com/article.asp_Q_ai_E_1092&sid%3DINEM1084&EID%3DALL0811b&lm%3Demer

New Loop Officially Thrown....

So our cute boy decided he still doesn't like to breathe at night and even at times while he's awake.  So after his tough surgery at the beginning of the year and the steps to control his reflux we're right back where we started from.  He will be on night time oxygen and he will have a new sleep study (that we pushed to January for financial reasons, with Dr approval of course), new scopes and possible pulmonary testing. 

I've been a bit spent and exhausted today.  In exploring my reasons, when it could really be worse; I think its like this:  you do things thinking they will make something better.  You start living life like things are good.  Then something like this shows you not only is it not but somehow you missed the signs that they weren't.  How can you miss it?  So its like you really try to push yourself into denial because you just don't want to believe it and you think there must be some mistake and yet you are still making the phone calls and making the plans to find out what is wrong, yet its this surreal process of going through the motions but really just wanting your life and the life of your child to be "normal".  To just not worry about this, to live in blissful ignorance.  To just live.  Sometimes that is my greatest wish of all, to just be. 

Truly we've had a good few months run really, fairly uneventful; so I really just need to appreciate that.  But for today and maybe tomorrow I'm going to induldge my emotion as it stands and then just pick up and move forward.  Enjoy the 4 months we have before we have to worry about any tests or further intervention and just be.......

More Simon is Getting Healthier News-Sort of

I spoke to Simon's ENT nurse today because we were supposed to do a follow-up oximeter(sp) a few months ago but the scope and GI stuff made me forget about it.  So we will have that done sometime this week and *crossing fingers* we can return his oxygen concentrator.  He's been sleeping pretty great most nights, he still has moments but overall much better.  Most of his sleep apnea is Central so oxygen really won't do much if his brain forgets to breathe, but he's been sleeping pretty well so hopefully the obstructive portion of the sleep apnea is resolved enough that his dips are more mild and we can just get rid of one more piece of equipment.  Woo hoo! 

Family Update

Everyone is just plugging along not too much exciting going on.   Joseph and Hayden both have jobs washing windows now and they are happy to have the extra money.  We have added Meagan (Joseph's girlfriend) to our family as our nanny.  We love Meagan and are happy to have her here with us.  Simon is doing great.  We had a follow up with GI Wednesday and she was so pleased with how he looks.  He gained .6 grams and 4CM and is on a steady growth line.  To avoid any major intervention we've decided to up his calories by switching to 1.5 calorie food and less volume so he's getting the calories but not the reflux inducing volume.  She decided not to do another scope at this time and just see him in 4 months.  He sounds good and looks good, lungs sound good so she felt comfortable to wait on that and we are very grateful. 

Joseph, Meagan, Simon and I all went to the local pool and tried

Doterra is so Awesome!

So I'm always exploring ways to help my family be healthier.  I'm a coconut oil freak so I was prime to be introduced to Doterra essential oils.  I've been watching a church friend just start looking better and better and knew she was into these oils because she invited me to classes I couldn't attend.  Now that my work moved me back into this area I have more spare time and told her I wanted to learn more.  Let's just say I was impressed and am now using oils everyday on all of us but the teenagers who don't listen to me anyway.  They will diffuse though so that's something ; )  For Simon lavendar has been a great all purpose, I'm also using On-guard and Frankincense for his brain health as well and Melalluca for his stoma!  For me I am using a variety of citrus and feel alive and wonderful everyday.  I'm also using Frankincense and On-guard and Slim & Sassy.  The hubby and a friend of mine have GI issues and have been using digestzen and they are seeing great results!

So Doterra was founded by healthcare professionals who wanted world class therapeutic grade essential oils introduced to offer a wellness alternative.  These are PURE ( no additive) essential oils who's quality control is unsurpassed.  I am becoming passionate about Doterra.

Here is a link to my site:

http://www.mydoterra.com/valoriedodart/

Also if after reading you're interested in a class or signing up here is some information on the best way to sign up to get your oils wholesale OR if you have ANY questions at all, feel free to contact me at valvied@yahoo.com

Here are 3  ways to purchase Doterra oils

1. Just buy retail. It’s easy.
2. Get wholesale prices with a $35 membership, or get the membership free when you enroll with an enrollment kit.
3. Get an enrollment kit and membership. You will quickly discover that you use up some oils faster than others and develop favorites. Replenish these and try new products on Doterra’s Loyalty Rewards Program.  Get an additional 10%, increasing to 30% back in free products (greatest value even with shipping). For every order over 50VP you receive points back for free product and you can change your order every month. You can cancel at anytime, but make sure you redeem your points first! You can earn up to $100 a month in free products on this generous program!

How to get your oils for free

1. Invite friends to try Doterra’s Loyalty Rewards and pay for your own oils (easy).
2. Actively share Doterra and supplement your income by $1,000-$3,000 a month (not hard to learn how).
3. Replace your income entirely. Doterra has the highest retention rate in the industry at 65% and their compensation plan is phenomenal and more generous than most network marketing companies (I can teach you to duplicate a pattern of success. Are you determined?).

If these oils are going to change your life, you need to have them in your home. If you use them yourself, it’s so easy to share them! Which kit is right for you?

Essential Oil Kits

All of the following kits include enrollment.

CLEANSE & RESTORE KIT   $150   100PV

Kit Includes:

• Lifelong Vitality Pack
• GX Assist
• PB Assist+
• Lemon
• Doterra IPC Introductory Packet

FAMILY WELLNESS KIT  $250   200 PV

Kit Includes:

• Lifelong Vitality Pack
• PastTense (10 ml)
• Fractionated Coconut Oil
• Family Physician Kit-26 Page Info PDF - 5 ml bottles of lavender, lemon, peppermint, melaleuca, oregano, frankincense, Deep Blue, Breathe, DigestZen, & On Guard.
• On Guard Foaming Hand Wash and Two Dispensers
• Doterra IPC Introductory Packet

FAMILY PHYSICIAN AND SLIM & SASSY KIT   $150.00   110 PV

Kit Includes:

• Family Physician Kit-26 Page Info PDF - 5 ml bottles of lavender, lemon, peppermint, melaleuca, oregano, frankincense, Deep Blue, Breathe, DigestZen, & On Guard.
• Slim & Sassy
• Doterra IPC Introductory Packet

HOME ESSENTIALS KIT   $250.00   220 PV

Kit Includes:

Essential Oils-15 ml Size of Lavender, Lemon, Melaleuca, Oregano, Peppermint, Breathe, DigextZen, & On Guard.
Essential Oils-10 ml Size of PastTense
Essential Oils-5 ml Size of Frankincense, Deep Blue.
Doterra IPC Introductory Packet

WELLNESS COMPLETE KIT   $520   400 PV

Kit Includes:

• Lifelong Vitality Pack
• TerraZyme
• Family Physician Kit-26 Page Info PDF -5ml bottles of lavender, lemon, peppermint, melaleuca, oregano, frankincense, Deep Blue, Breathe, DigestZen, & On Guard.
• Essential Skin Care Kit with Invigorating Scrub
• AromaTouch Technique Kit- 5ml bottles of Balance, lavender, peppermint, melaleuca, wild orange, AromaTouch, Deep Blue, & On Guard.
• Lotus Diffuser
• Doterra IPC Introductory Packet

PREMIUM ESSENTIAL OILS KIT   $500   400 PV

Kit Includes:

Essential Oils-5 ml Size of Purify, Deep Blue, Elevation, Serenity, Balance, Eucalyptus, DigestZen, Wild Orange, Grapefruit, Lemongrass, Marjoram, AromaTouch, Oregano, & Lime.
Essential Oils-15 ml Size of Lavender, Peppermint, Lemon, On Guard, Melaleuca, Citrus Bliss, Breathe, & Frankincense.
Fractionated Coconut Oil (4 oz bottle)

• Lotus Diffuser
• 5 Introduction to Essential Oils Audio
• Wooden Doterra Storage Box
• 5/8 Dram Sample Vials (15 Vials)
• Doterra IPC Introductory Packet

LOYALTY REWARDS OPTIONS

MONTHLY VITALITY     $160     150 PV

Kit Includes:

• Lifelong Vitality Pack
• TerraZyme
• PastTense 10 ml
• On Guard

HEALTHY INSIDE & OUT     $180     155 PV

Kit Includes:

• Lifelong Vitality Pack
• Essential Skin Care Kit with Invigorating Scrub

OIL SHARING KIT   $1150.00   1000 PV

Kit Includes:

Essential Oils-1 Bottle Each 15 ml of Coriander, Grapefruit, Oregano, Citrus Bliss, Elevation, & Serenity.
Essential Oils-1 Bottle Each 10 ml of Deep Blue
Essential Oils-2 Bottles Each 15 ml of Frankincense, Lemon, Wild Orange, AromaTouch, Balance, & Slim & Sassy.
Essential Oils-2 Bottles Each 10 ml of PastTense
Essential Oils-3 Bottles Each 15 ml of Lavender, Melaleuca, Peppermint, Breathe, DigestZen, & On Guard.
Essential Oils-3 Bottles Each 5 ml of Deep Blue

• Lotus Diffuser
• Opportunity Brochure (10)
• Product Guide (10)
• 5/8 Dram Sample Vials (72 Vials)
• Cap Stickers for Common Oils (5 Sheets)
• Fractionated Coconut Oil (4 oz)
• Sample Keychain
• Doterra IPC Introductory Packet

EVERY OIL KIT   $1500.00   1400 PV

Kit Includes:

• Every Doterra Essential Oil
• Fractionated Coconut Oil (4 oz)
• Canvas Bag
• Lotus Diffuser
• Doterra IPC Introductory Packet

 DIAMOND KIT  $2150.50   2000 PV

Kit Includes:

Single Essential Oils-15 ml of Basil, Bergamot, Cassia, Clary Sage, Clove, Coriander, Cypress, Eucalyptus, Frankincense, Geranium, Ginger, Grapefruit, Lavender, Lemon, Lemongrass, Lime, Marjoram, Melaleuca, Myrrh, Oregano, Patchouli, Peppermint, Rosemary, Thyme, Vetiver, White Fir, Wild Orange, Wintergreen, & Ylang Ylang.
Essential Oil Blends-15 ml-AromaTouch, Balance, Breathe, Citrus Bliss, Elevation, Purify, Serenity, Slim & Sassy, Terrashield, & Zendocrine.
Essential Oils-5 ml size-Cinnamon, Helichrysum, Melissa, Roman Chamomile, Sandalwood.
Essential Oil Blends-5 ml-Deep Blue, DigestZen, On Guard, Past Tense, & Whisper.
Essential Oil Blends-10 ml-Clear Skin, & Immortelle.

• 2 Each of the Lifelong Vitality Pack.
• 1 Each of the Fractionated Coconut Oil, Intro to Essentials Kit, Aroma Touch Kit, Family Physician Kit, Canvas Bag, Lotus Diffuser, On Guard Protecting Throat Drops, On Guard Hand Sanitizing Wipes, On Guard Foaming Hand Wash with 2 Dispensers, Essential Skin Care Kit with Invigorating Scrub, PB Assist+, GS Assist, 5/8 Dram Sample Vials (15 vials), SanoBella Protecting Shampoo and SanoBella Smoothing Conditioner, Hand and Body Lotion, Trim Shake Chocolate, Trim Shake Vanilla, Citrus Bliss Invigorating Bath Bar, Serenity Body Calming Bath Bar, TerraZyme, Zendocrine.
• 10 Each of the Product Guide, Slim & Sassy Booklet, Introduction to Essential Oils Audio CD & Booklet, Family Physician Audio CD, Essential Skincare Product Brochure and Doterra Opportunity Brochure.
• Doterra IPC Introductory Packet.

Recipe For Success with Doterra Oils

Step #1 – Select a kit so you have more than one oil or product to draw upon when needs arise.
Step #2 – Decide which products and oils you want to use repeatedly and share with friends. Order these items through Loyalty Rewards to earn 10-30% free product credit back. After 12 qualifying orders you will be getting 30% back (so 33 points for $100 spent), along with the wholesale 25% discount–it’s like getting the oils over half off!
Step #3 - Contact me through my website so I can help you (if you need) over the phone or go to my http://www.mydoterra.com/valoriedodart/directly and click on join to enroll yourself. Be sure to enter Valorie ID #83391 as your sponsor, and I will be happy to help you however I can.


Step #4 – Get some reference materials. If you know the alphabet, you can easily learn all about oils. Here are my favorites:

These large reference books retail for $25, but I can include shipping for that price if you want to order from me. I order these in bulk to lend out to people all the time.

Contains the same reference info as the book above without the sections on the single oils, the blends and the oil inspired nutritional supplements, it’s softcover and half the size. This one sells for $13.95. AromaTools sells these along with sample bottles, labels and many other valuable tools

The All Natural Face Review

I am so not good at this blogging thing but wanted to share a discovery that I've been keeping to myself for the last year or more.  The all natural face at http://theallnaturalface.com/index.html

I was having some problems with itchy eyes and red splotches on my face and was talking about it around one of Hayden's friends.  She suggested the all natural face and said I could get samples for a great prices and I should try it.  So I ordered the sample kit and man she sent a little of everything for such a good price and then once I tried it?!  I was hooked.  I've been a loyal customer for well over a year, year and a half.  Its all vegan makeup.  I don't have problems with my eyes using any of it and she makes the funnest colors of eyeshadows and eyeliners that I've been having a blast.  The foundation covers so completely and well and again such a good price with specials running every month on top of already great prices; there is just no going back for me.  I've tried almost everything she makes LOL.  The other funny thing is because of her I am hooked on coconut oil.  LOVE it!   I use her hair tea about 5 times a week and use low sulfate for off days.  I have started dyeing my hair with henna and love the results (its a commitment).  We just received their sunless tanning lotion and I thought because of the lack of chemicals it wouldn't be very potent so I just was kind of liberal with it; no need, it worked fast and well.  Overall what I can say about The All Natural Face http://theallnaturalface.com/index.html is I have not tried one product that I was disappointed with and for a sensitive skinned person for me its been a life changer!

Back to Blogging Though Things are a Bit Hectic

I work full time and Simon had two doctor's appointments last week, and I helped lead a parent's hour at the hospital and Joseph has prom coming up so I had to go tux renting with him.  Needless to say things have been busy. 

So the new scoop on Simon, sort of.  His upper GI showed a distended esophagus, hiatal hernia (that is new) and reflux.  The evidence of the GI bleed during his surgery and the distention suggests that he has had long-term reflux, though 3 years ago it was minimal.  He has a malrotated colon but the GI did not think it was showing signs of symptoms so we're not worrying about that unless the surgeon said something.  The surgeon ended up not being in town so she couldn't have him pop in like she had hoped.  So we were waiting for his input and then would schedule the scope and biopsy and do the PH probe. 

So I get a message from the surgeon's nurse that said he did not need to see Simon YET.  So, like the patient person I am, decided to wait to hear from Dr. O'Gorman to tell me what he said and when to schedule the other tests.  No phone call.  Not like her.  So I called today and left a message.  She is in clinic the last couple of days but I'm anxious to know whats going on.

Two things she mentioned was for children like Simon are usually considered with these symptoms; a nissen or a GJ tube.  We didn't make a decision or discuss it more because until the other tests are done we don't know exactly what we're dealing with.  But I did start my GJ research because I naturally thought no surgery, we'll just do a GJ, problem solved.  Well, there are things that make me uneasy about the GJ and now I'm not sure.  So I've decided to stand back, wait for the tests to tell us what they need to, what they plan to do or consider and then so some real praying and soul searching for the best solution.  Quiet meditation is how Simon and I communicate best so I wait for him to send me the mommy this is best vibe and the Dave to give his opinion. 

I have to honestly say, I wish Simon was done with "issues" it really seemed like a honeymoon period for awhile.  But this proverbial slap in the face of reality has kind of ticked me off.  Simon rarely shows strong evidence or symptoms of illness for some reason.  His fevers don't get extremely high, even with RSV and pneumonia simultaneously.  His reflux he seemed to have a handle on.  I'd see him swallow hard sometimes and get tense but it wasn't constant vomiting like when he was younger or even spit up problems or the old aspiration type holding breath and panicked look he used to get.  It was an innocent general question about adenoids that started all this and it feels like a return to when he was born; "we'll fix this and then you'll just go on like normal." It wasn't true then and isn't proving to be true now.  Its exhausting not quite feeling like you know what's coming next. 

If not for his smile, his giggles, his quiet moments of reassuring wisdom connecting with my spirit, I'd be a bumbling idiot by now.  Shut up Dave! LOL If not for the support of my husband and partnership as a family with Joseph and Hayden, so helpful and such good big brothers who do nothing but treat Simon as a brother and with love, I would be lost.  Without my shaky faith, but a Heavenly Father that in the midst of my fits lets me know I'm never alone, I would fall. 

I love my family.  I am thankful for them.  But the worrier in me and the need to know what's coming so I can run through at least 50 scenarios to make a decision does not like these surprises they like to throw at me.  I'm sure its a character builder, but I'm enough of a character!

Slow but Sure and Back to Real Life

Simon is progressing.  He was having trouble laying his head down and it was heartbreaking to watch.  I finally called his Dr to see if this was normal and apparently the neck muscles can get hyper-extended from all the scopes and T&A. So he sat in his special tomato with a heating pad.  Tylenol is taking the edge off his pain.  The poor kid seems to almost have separation anxiety and just does not want to let us out of his sight.  He has lost 2lbs during this whole ordeal and we need to increase his food, but right now its hard for him to handle what he's taking in......We'll get there.  I'm not a patient person but I'm becoming so thanks to my great guru Simon.   

I went back to work Friday and now I understand how people can become reclusive.  After being cooped up in the hospital and then home for so long interaction with others filled me with anxiety; or being away from home and my control of making sure Simon was safe filled me with anxiety, but I was filled with anxiety regardless.  Work is a definitely love hate relationship.  But you do what you gotta do.......

All the kids are back to school now.  Routine is good.  I'm having trouble motivating Hayden to concentrate on his school better.  I'm open to any suggestions for a strong-willed, stubborn almost 16 year old.  Who by 16 year old definition already knows everything and school is teaching him absolutely nothing.  I figured then he should go work for NASA and make himself useful with all his knowledge but ironically NASA really prefers you at least have a high school degree so we're stuck.

So through all of this I was driving to work to make sure I could get home in a hurry if needed.  Now I'm back on the train with all the "characters".  There are some very interesting people/situations on the train, including my own so after much pushing and deliberation I will be starting a train stories blog for some comedy relief. 

Our Very Unique and Quirky Simon

I kept trying to start this post several times over the week so I think I'm just going to wrap it up and add it.

Well, we've known pretty much since birth that life with Simon was not going to be ordinary. Sometimes we start living our normal lives and just kind of start getting kind of comfortable with ordinary; but like the saying goes "if you want a good laugh, tell God what your plans are." The fact is even though Simon took an expected detour from ordinary its been quite a while since he has. I still consider us very blessed, we have a lot of friends battling very hard every single day and extraordinary parents taking great care of them.


So this is what happened: Simon went in for 3 separate types of scopes to check his airways and esophagus to look for obstructions contributing to his sleep apnea; we knew the tonsils and adenoids would be coming out as well; pretty routine right? After about 45 min his Dr. came out and said he had GI bleeding that looked like old blood and he had aspirated some in his lungs so they "cleaned" and suctioned those, there was also signs of prolonged reflux and aspiration, and he asked me who his GI doc was. I told him and instantly my anxiety level went up about 100 notches. They called me to recovery almost instantly which I didn't expect but was thankful for the gift. Simon was so agitated I was so saddened to see him like that; but I knew we were staying so he would be alright and GI would tell us what to do. As many of you know time in a hospital is so surreal and it always feels like you're waiting for ever and I'm pretty sure we did. In the meantime Simon was vomiting blood and could not get his O2 saturations up. No one dared feed him until we heard back from GI, he was on IV's so it wasn't dire, but when its your kid everything feels dire. Finally the nurse came in and told us GI ordered prevacid; what? His anethesiologist (who I loved) stopped by and asked how he was doing, when I told him the treatment plan he just got a look and said "that was a lot of blood in his stomach." So I pursued that further and did finally feel good that prevacid is the best treatment at this time. He is no longer vomiting blood and additional acid can cause ulcers and irritation that can cause that type of bleeding. I knew his GI was smart but its irresponsible to not make sure you also feel right about whats happening. I'm still admitadly nervous about it all and am looking forward to his appt with his GI on Wednesday.


Simon could not keep any fluids down at all. He had an extremely rough night and never settled. He could not keep his oxygen saturations up even on 2 liters of O2 and we had to add a blow by as well. Simon vomited most of the night. I'm not going to go into how we were sent home but I will say Simon vomited while getting him in his chair and the mentality still seemed to be rushing us out. I'm very disappointed with the experience. We knew he shouldn't be leaving but I was hopeful that maybe being home would be the best thing for him to heal. Within minutes of getting him home I knew that we wouldn't be able to sustain him there and called his pediatrician. I figured if he felt we could care for him safely then I would feel better about it. He decided to send us up to our local hospital and get him on IV's as his stomach was not moving at all. Eventually it was determined that the lortab stopped his bowel system. We did come home on oxygen so we just continued on the 2 liters. After a day or two here we decided to try to wean him to 1.5 liters and he immediately plummetted to 84 so we decided it wasn't time to make that move after all.


On Friday we started him on 1/4 diluted food on a slow pump and except for some gagging initially he's done well and seems to be becoming less restless all around. We've had some diarrhea and his stomach is starting to turn on again. We turned down his oxygen again and had much better results. We started a slow pump of 1/2 diluted food and he did well. Turned down his oxygen more and he did well on that as well.


We finally started seeing some sparks in him and personality. There was nothing more heartbreaking than seeing him getting poked and IV's and not reacting at all. When this all first happened he wouldn't even move out of the position he was put in; by Friday he was trying to roll and forget everything else; that is what made my breathe my sigh of relief.



We are home now; all of us exhausted. Simon's lungs are still gunky but he's just barely dipping below 90 occasionally and all without oxygen; he is still on his night time oxygen and still in pain. He can't take lortab so we're giving him tylenol every four hours to make sure he doesn't hurt too much. We are so happy to be home though and glad he's improving. Simon's body has difficulty sometimes and I think this was just too much for it to take on its own.

Merry Christmas, Happy New Year and Just Living Life

I haven't been great at keeping this up well at all.

We had a good Christmas. Quiet and together. I think we managed to surprise the boys which is what I really like to do. Just to keep that magic alive. Simon's switch didn't quite work out with the toy we planned so we're searching for a good toy to use with it. I'm still glad he has his own switch though. I found him a great musical bath toy that he can bat at and activate; PERFECT and he loves it too.

The New Year for us was quiet; except for the teenagers we were asleep by about 11:30PM, that is just how we roll. Sleepy. LOL The next morning it hit me we're only a couple of days from surgery and I just held Simon and cried. Even these minor surgeries get me until they are behind us. I can't stop kissing his cheeks and hugging on him. He started pushing my face away tonight so I guess I've reached my quota for the weekend.

I will leave you with my New Year's wish for my fellow chromosome moms, but I think its fitting for all parents really:

May the new year bring you happiness and especially good health. Smart doctors and caring nurses. Therapists who help your LO strive to their fullest potential. A smile that melts your heart or even just a blink; and a spirit that seems to speak to yours. Just remember to look back and pat yourself on the back! You made it through challenges and surprises that on days you didn't think you had the strength too. All the worries and sometimes heartache for your LO, they are behind. You can take those baby steps forward knowing that your LO is in your wonderful, able hands to guide them to be the best they can be, already in 2010, now in 2011 and continuously.I think you are all amazing people, raising other amazing people! I wish you a very happy new year.