*Important*

My friend in Tennessee posted a very well-written blog that I think is important for all to read. She has a wonderful way with words and maybe she can help you understand why language is so important to us. Renee's Blog- Life With My Special K's 03/29/2008 "Why It Hurts"

Slideshow from Trip

So, I tried to post a few pictures directly and it was trying my patience, so here is a slideshow. Enjoy.

WE ARE HOME!

Ethan and I returned back to North Carolina after an almost two-week stay in California with my parents. We were greeted at the airport by Karen, one of my best friends and Olivia's Mother for anyone who has been reading earlier posts. I have never been greeted with such enthusiasm and excitement before! She ran to me and Ethan like there was no tomorrow and then we just held each other and cried. We both really missed each other!!!

Amazingly, our luggage made the flight with us. Our red-eye flight out of Oakland left over an hour late which left me about 20 minutes to get from Terminal C in Houston to Terminal B. You guys didn't know that I could run that fast, did ya?!?! LOL! I literally arrived at the gate as the airline attendant was saying "If you have a ticket for Raleigh/Durham, you should be ON THE PLANE NOW". So, for our luggage to make it too was miraculous.

Neither Ethan nor I slept hardly at all for over 24 hours. Ethan cried and fussed a bit, but because he wanted me to hold him before take-off and we couldn't do that until we were mid-air. Overall, he was a good traveler on the way home.

After we left the airport, we met up with Karen's cousin, Shannon, at the Cheesecake Factory (yum, yum, and more yum, yum's). It was a great tour of the mall parking lot until we found it. Fun times...

Scott was home when we arrived home. Ethan was SO excited to see our house. It was the funniest thing! He saw the house and just got the biggest smile on his face! I wish that I had the camera out for that one. We basically got our stuff inside and collapsed. Well, I did anyway. Scott and Ethan had playing to do. I will post those pics a little later after they are uploaded to the computer.

The trip was good. I didn't feel good a good majority of the time due to my allergies and some things happened that totally crushed me emotionally, but I was home, got to see my family, party with my sister, Kamrin, for her birthday and go back to Yosemite with Ethan. The weather was beautiful, never even needed to bust out my jacket or big sweaters.

We were able to see some friends along with some of Scott's family. We missed lots of people which is sad, but also got to see people that we didn't think we would or could, so that was an added bonus.

I am so happy to be home. I LOVE MY BED. I was able to sleep in today, which was beyond lovely. Of course, Ethan was in his room, taking his toys and chucking them over his gate onto the hardwood floors. Thanks Son.

Pictures to follow soon...I hope. :-)

8 more days

And Ethan and I will be on our way to California. We have a stop in Houston, so we will also get to see Kimberly, Steve, and Joel. I have never looked forward to a layover so much in my life! :-) We will get to spend almost 3 hours with them- YAY!

We will then be in California for about two weeks. We haven't been back in close to two years, so it will be interesting to see how things have changed. I plan on going to Yosemite so Ethan can be there. My mom says that there is plenty of snow, so Ethan will get to play in the fun white stuff. I hate packing for cold weather though- we usually travel during the summer so we don't have to deal with bulky stuff.

Scott doesn't get to come and we are really bummed about that. But, maybe it will be a good respite for him too.

Ethan and I will get to meet Christopher, my brother Kolt's baby, for the first time. Ethan will have a playmate for the weekend! I am hoping to be able to spend some quality time with my nephews and niece too. Two weeks is going to go by way too fast.

Olivia has been gone for two weeks and two days now. I definitely have my bad days. This will never be ok.

We went to Atlanta over the weekend for a Downsyn meetup. It was much smaller than last year's, but we had a good time. Some friends let us stay with them which was much more relaxed and good for Ethan. He was able to play with Natalie who is almost two.

I have been going crazy getting Ethan consults with different doctors. I am going to have him see a neurologist about tethered cord/spina bifida occulta. Let's just say, a hairy back on a 6 year old is not common...

The next doctor would be the cardiologist. I would feel a LOT better if I know that the holes in his heart are CLOSED. He has not had an echo since he was around 2 weeks old. All the doctors are confident that his heart is fine, but for my peace of mind (since our luck is not so great lately), I would just like to get it cleared up for sure.

Scott's sister, Cindy, may be coming to visit us next month! We are so excited about that too! Lots of stuff going on. Trying to keep my head on straight...

The Princess Party That Never Should Have Been

Yesterday, we laid our dear Princess Olivia to rest. So many people came yesterday and the night before to be with Olivia one last time. People came from other states to see her. She was such an amazing spirit that touched so many people all around the globe. The flowers that were sent were amazing.

After Olivia's beautiful service, we released pink Princess balloons in her honor.

Photo and video editing at www.OneTrueMedia.com

I miss her terribly. My heart is aching. As I try to encourage Karen to rest, I find myself not being able to do it either. After laying down last night around 2am, I found myself awake at 2:30 from a nightmare. I was hoping to dream of Olivia dancing and singing along the streets of gold. Maybe today's nap will bring that dream to me.

One of our darkest days...

February 13, 2004. Ethan is diagnosed with leukemia. It is a date forever etched in my brain. Today, he is a growing, healthy little boy. He amazes us everyday- even with the newly emerging terrible two behavior!

I am still numb about the loss of our sweet Olivia. As I make a couple of phone calls for Karen to inform of Olivia's passing, it still seems so unreal. The last dr. I spoke to said, "OH, I hate to hear that"...I said, "I hate to say it". Karen and I have gone to the funeral home the past couple of days to see Olivia. This may seem creepy to some, but it is done out of pure love. Last night, we even dressed her in her beautiful gown. Her hair is curled and she has her special bow in. She is wearing her new ring and bracelet. We still have to take her necklace and a couple of her belongings that will stay with her forever. Karen and I must seem so odd to the funeral home director...we were fixing makeup (originally, she was a little too orange), putting on lip gloss, and picking fuzzies out of her hair. These are things that we did when she was alive and it just seems right to be the ones to do it until the end.

Karen was able to pick Olivia up and hold her before laying her into her casket. It was a beautiful moment and I am so honored that I could be there with them during that time. I am so thankful to Karen for allowing me to be such a big part of Olivia's life. I just cannot even begin to put into words how much I love that precious little princess. Not loved, love. Love does not die with the person, nor does it fade.

Thank you to everyone who has sent condolences for Karen and Olivia's family. It is so appreciated.

Our loss, Heaven's gain

Today at 4:58 pm, Olivia earned her wings. Thank you God for answering our prayer for a peaceful passing. Our hearts break for our loss. Olivia was a true Princess. She passed in her favorite place- her Mother's arms. I am reminded of Steel Magnolias when Shelby passes and M'Lynn says how it was truly a beautiful thing, being able to be there when that precious child was brought into the world and also when she left this world. There is no bond as that of a mother and child.

I loved Olivia from the first time I met her. There has always been something about her. She was what love is. SO many people love her- people who have never met her or Karen. It is just a testament to how someone can speak volumes without ever saying a word. Her smile lit a room. Her love was unconditional.

I knew that God brought me to North Carolina for a reason(s) and I truly believe that one of those reasons was so I could know Olivia and Karen. I have been so incredibly blessed to have been a part of their lives. I always made it a point to come over to the house to visit at least once a week so I could see the Princess. We read stories, sang, and had great talks. Olivia gave the most wonderful kisses- kisses I will forever treasure. I will never forget the time that Olivia raised her arms out to me for a hug or when she would shake her head NO when it came time for me to leave. Of course, she usually didn't mind if I took Ethan home because, bless him, he never did have a good sense of where his feet were flying and would step on her *sorry Livvie*.

When I lost my job last month, I told Karen that she had full coverage (Posse members made a pact for Karen to never be left alone during this time) and she made a comment about how maybe that's how God intended it. As the weeks unfolded, I really began to believe this. I was used in a certain way to be able to help care for Olivia and Karen. I am so grateful for all of the extra time that I had with Olivia and I thank Scott and Ethan for being so wonderful during this time too.

There were times over the past few weeks that I had hoped that we were all in a bad dream and this really wasn't becoming a reality...if only. Olivia defied all odds and definitely did things on HER time. She was surrounded by loved ones until the very end and she will FOREVER BE A PRINCESS!

*Livvie...sweet baby girl. I miss you terribly already. While my heart aches here on earth, I also smile with joy because I know that you are dancing and singing through the streets of gold. You are whole and perfect. No more seizures, no more tubes, no more pain. I will continue to take care of Mommy, just like I promised you. I love you sweet Olivia, forever and always!*

Please continue to pray for Karen and Weldon as life as they know it has just been turned upside-down. Thank you.

No AVM

Yesterday, I had the cranial arteriogram done. It wasn't that bad. They said that I would be consciously sedated and not remember anything...yeah, I remember EVERYTHING. Go me. The whole catheter in the groin was a ton of fun. The contrast (dye)was even better- it made my brain hot and crampy. Then, when it was all done, the doctor had to keep pressure on the incision site for over 10 minutes. I was sore last night from all the mashing with pressure. When I got back up to my room, I developed a migraine. I was given some tylenol (not sure if it had codeine or not, but I was asleep the rest of the day). Sleeping everything off helped ease the nuisance of having to lay completely flat for 8 hours.

So, the good news is that they did not find an AVM. AVM's can be very serious and dangerous. They did find that I have narrow vessels transporting blood and I hear the "turbulence" of the blood flow. Well, I have known that it is blood flow that I am hearing, so that was nothing new. What we do about it now is up to the ENT again. I have no clue as to what he will recommend. It will likely be a "live with it" situation. So, while it is good that there isn't an AVM- if it was, at least there would have been treatment options.

Thank you for the prayers about the procedure, for my job, and for Olivia & Karen. It means so much to me. Olivia's seizure medicine was increased yesterday, but before anyone gets too excited...seizure meds have some nasty side effects that include respiratory distress among other things. It's like fixing a problem to create another, but everything is done day by day. Please continue to pray for sweet Olivia.

Photo courtesy of Anne Grant Photography

Getting a little nervous

I shouldn't. Tests like this are done all the time. Just the idea of something being threaded all the way up my body is a little creepy. I have Kim's book to take with me and read. God bless my sister who can write me a book for day's like tomorrow.

Finally- someone else heard it!!!

Ok, so for those of you that don't know...I lost my job a couple of weeks ago. Long story short- my friends who I worked for stabbed me in the back. This is supposed to make me happier. Sure it does. I LOVE worrying about how my mortgage will be paid or how I will keep medical coverage for my family. Yep- I am SO much happier now. Enough of that. They don't deserve my energy anymore.

The good news. I went to the radiologist/neuro doctor yesterday for my pulsatile tinnitus in my left ear. I have had this awful swooshing sound in my ear since I was around 8 weeks pregnant with Ethan. At the time, it was just supposed to be excess blood flow that would go away after the baby was born. Nope. Didn't happen. I was then referred to doctors at UCSF. They did lots of tests to rule out a tumor (obviously, I did not have a tumor). But, when they could not duplicate the sound by stethescope, I was blown off and basically told that I would just have to live with it.

I was referred to this neuro dr. from the ENT here in NC. He listened. He could not duplicate the sound either. He recommended a cranial arteriogram to rule out an arterio-venous malformation (AVM). He didn't think that the test would show anything, but we should try. I felt like I was going in circles again. More tests just to be told in the end that I would just have to live with it. I was disappointed and started to cry. (Imagine listening to a baby's heartbeat during a sonogram, close to 24/7 in your ear. Not cool. I love to hear it on a monitor, not in my ear!!!)

Another doctor on the team also took a listen. She stands up and says, "I think I hear it". She then described the sound and sure enough, SHE HEARS IT!!! She listens again, and again. Yep. No mistaking- she hears it! I, then, REALLY begin to cry. Finally- someone else heard it! I am NOT crazy.

Now, the arteriogram is set for Wednesday morning. They now think that the probability of finding an AVM are much higher. I am not looking forward to this test at all. Apparently, they sedate me, put a catheter-type thing in my groin all the way up to my neck and then inject dye so they can see all the arteries in my head. The fun part is after it's all done, I have to lay flat for 8 hours so to make sure the groin incision does not bleed out. All I keep thinking is that I am too young for all this crap!!! (Rheumatoid Arthritis at 25 and this...I wonder if they are linked at all)

Ethan is doing well. It snowed on Thursday and then today, but today didn't stick. Boo. Olivia has good days and bad days. We are just all loving on her while we can and take nothing for granted. I actually need to get ready to head over there.

Christmas 2007

Christmas was so incredibly quiet this year. No, I never put a tree up. Shame on me, I guess. Ethan could really care less right now and Shep always likes the hug the tree and make me think that he is going to knock it over. Ok, ok...next year I will put it up. Can you try to convince Scott to put up the Christmas lights outside? (Yes, he has refused for 5 years now...grrrrrr).

Ethan got the gift of his dreams. Not a red rider bb gun, but a red dirt devil housekeeping set! How exciting!!! I don't have to clean anymore!!! Ethan will take care of it! LOL!!! Check him out- he has been carrying this stuff around the house since he got it!

Photo and video editing at www.OneTrueMedia.com

We hope that everyone had a wonderful holiday. I am still so homesick. May will not get here quick enough...

Today is my grandmother's birthday!!! HAPPY BIRTHDAY MOM!!! WE LOVE YOU!!!

Just cuz...

Christmas has come and gone. Nothing exciting to report except that Ethan LOVES his new Dirt Devil kit, complete with mini-mop, scrubber, duster, and broom. He has been carrying those things around since he got them. I think that I may have a clean freak on my hands! I guess that's kind of a good thing for me! LOL!

Ethan's big boy tooth is already coming down. He's not wasting any time with this snaggletooth business!!! He does have a little bit of a tummy bug, but overall is acting great.

We hope that everyone had a wonderful holiday. Lots of love always...

It's Christmas Eve!

And, I have close to zero Christmas spirit. No tree. Only a present or two for Ethan. I just refused to go into further debt for something that Ethan has no interest in yet. Sad? Yes. But, it is what it is. Our Christmas present to our family was to take the money and pay bills. Yeah us. Then, maybe we can visit home sometime in the Spring. We miss everyone back home so much.

We hope that all of our family and friends have a fabulous Christmas filled with love. (For anyone wondering- I will mail out the Christmas cards when I can- hopefully this week.)

Here's a picture of Ethan's missing tooth.


And, I just added these to the computer. Ethan was all smiles after school one day a couple of weeks ago...

Ask and you shall receive, Renee! :-)

Well, I came to write shortly after Kamrin left from her 10-day visit last month, but found myself crying to hard to complete the post. I had not seen my sister in over a year and I just didn't want to let her go. It was an extremely difficult day for me to have to walk away from her at the airport. Then, I think of my friend Frank who is getting ready to head back to Iraq- leaving his beautiful wife and four children. I could really get on a plane any time that I want (or that my credit card will allow!) and here our soldiers sacrifice their time with loved ones in order to ensure our freedom...God Bless them.

I thoroughly enjoyed having Kamrin here. We had a real Thanksgiving dinner- I even cooked a turkey! Try to not pass out there! Granted, it was a little turkey- only 6 pounds- but, it was more than plenty. I borrowed my neighbor's Wii game and we had quite the Wii workout! We also enjoyed a first together...BLACK FRIDAY! We left the house at 5am to go buy a treadmill. How crazy is that!?!? I guess when you save over $1200, it kind of seems worth it. So, we went, bought, came home, and went back to bed!

I have had a tattoo since I was 18 that I pretty much had grown to hate. I wanted it removed and then covered, but was told that the tattoo would have to become huge, so I opted against it. Well, I met a tattoo artist that just so happens to have a child with Down syndrome. One of her specialties is covers and she told me that she would have no problem covering my old tattoo. Of course, the cover would make it bigger, but not too much. I thought it would be fun for Kamrin to experience the new tattoo with me, so I made the appointment for when she was here. So, now I have a beautiful tattoo that means so much to me. When I get the pictures uploaded, I will post one. It is now three tulips and a butterfly. It is very symbolic. The tulips represent Down syndrome (3 chromosomes on the 21st). Tulips are also my favorite flower and they are grown in Holland. If you have never read "Welcome to Holland"- Google it and you will understand the deeper meaning behind the tattoo. I am also one of three sisters (another reason for 3). The butterfly is so I always have Mariposa with me (my hometown in California, meaning butterfly in Spanish). It is almost all the way healed now and I love it (Thank you Mitzi!!!).
UPDATE: Here's the before and after pic.


Kamrin and I went to the Biltmore Estate in Asheville, North Carolina. It's an amazing place...I can't imagine living in a place so large- especially way back when.


While I thought that Kamrin being here would take care of any homesickness I may have had, it actually made it worse. But, that's ok because I got to spend time with my sister, who I love so much. Ethan was so sad to see Aunt Kamrin go too, but gave her a great kiss good-bye...


Ethan continues to do well at school. Everyone loves him! He also continues to have a little love affair with Kayla, his one and only girl classmate. But, she is just as smitten with him and everyone knows it! It is so flipping cute. Ethan comes home with beautiful artwork almost every day and his walking continues to improve- even though we still have some attitude problems and laziness. We are getting there though. Ethan is moving up on the VitalStim therapy waiting list (http://www.vitalstimtherapy.com/ud.asp). There is no guarantee that it would work, but we have to try. Ethan's dysphagia is not getting any better and he runs the risk of pneumonia with every swallow. We will likely be getting the call in January.

I saw an ENT again for this darn pulsatile tinnitus. I basically have a wind tunnel in my ear. I have had it since pregnancy. All the tests at UCSF were a waste of time almost. They basically thought that I was imagining it. So, this ENT thinks that I have an AVM (Arteriovenous Malformation). I am still waiting on what further tests I have to have done or if there are any solutions that don't require surgery into my head (unless of course McDreamy wants to do it! LOL). I was also very sick a couple of weeks ago. Glad that is over with!!! UTI, pneumonia, flu, mono...fun times.

Scott has been keeping busy with work and Wake Forest soccer. He had a season's pass, of course. Well, Wake made it into the NCAA Championships which took place yesterday in Cary, NC. Scott and I- or should I say, Scott and his BIG A** Flag- made it onto ESPN2 about 7 times. Scott was the only one with a big flag and ESPN loved it. We ended up winning the game against Ohio State 2-1. It was freakin' freezing, but fun.


And, drum roll for the big news of the night!!! Ethan lost another tooth!!! I was flossing his teeth and could tell that one of his top teeth was starting to bleed and VERY loose. So, after wiggling it for a few minutes and fighting off the strength that is Ethan, we pulled it out. He had grinded it down to nothing- bless his heart. At least you really won't see a snaggletooth because you don't see his upper teeth when he smiles. HAHA. This growing up stuff is too much for me to handle!!!

I think that's enough for now, what do you think? I have been working on the Christmas card. Maybe this year I will actually mail them!!! Sorry- I will really try!!! Until next time...

Just a little update

Ethan has had a cold for the past week, so he has had his ups and downs, but more ups I would have to say. He is continuing to do well walking - even though he was a tad lazy about it today...

We took him to a pumpkin patch last weekend and then went trick or treating with Theresa and the girls. I have taken him out with the girls before, but I have never had him actually get candy from anyone. I figured that he was not going to be eating it, so why would I? So, this year I had a change of heart. He was all dressed up and walking house to house just like every other kid. So what if Daddy consumed all of the candy in less than 24 hours? Ethan was just like every other kid!

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On to the funny of the week. We now have new incentive to make sure the kitchen is clean and the dishes are done!!! Ethan's new obsession is standing at the kitchen sink and grabbing whatever he can! It is quite comical and yet a true realization that Ethan is just growing everyday and doing more and more! Whoever thought that a child getting into something would be a good thing? All you moms of children with special needs know exactly what I am talking about!!!

Photo and video editing at www.OneTrueMedia.com

That's it. Kamrin is coming to visit in TWO WEEKS!!! We are SO excited! (except for the fact that I am now required to cook a turkey...something that I have NEVER done!!!). I have a surprise for her and if you know what it is, shhhhh...don't tell! ;-)

Ethan's Walking Progress

I am so overwhelmingly proud of this post! Ethan has progressed more in the past two months at school than he did all of last year! He LOVES his class. He loves the one and only girl in the class, Kayla. He LOVES his teacher! He is very loved at his new school, just as he was at his last school. But, change has been great for Ethan and I know that he will be walking independently soon! As you will see from watching the video...

Make photo slide shows at www.OneTrueMedia.com

Port NO MORE! & Happy Birthday Ang!!!

Today was a huge day. Ethan's port-a-cath was removed. We arrived at the hospital just before 6am this morning. It was just me and Ethan. He was so giggly and happy. He was given some Versed to relax him before they took him from me to the OR. Once in the OR, they would use the mask to really put him to sleep and then they started the IV.

This surgery was so minor in the grand scheme of things, but so major in terms of finality and emotion. I have had some irrational fear that taking the port out would allow the leukemia to return. So, I finally succumbed to the request of our HEMOC team to have the thing taken out. Ethan did well with the surgery- it went perfect according to Dr. Turner. Post-op even went well! Besides being quite drunk from the meds for a couple of hours, his recovery is going better than I could have asked for. Back to school tomorrow and back to work for me!!! Yeah!

So, here you go- look to the left on Ethan's chest and you can see the bump of his port under his skin. The scar on the right is from his first port that was removed in July 2004.



And, here is his port. This little piece of metal and plastic supplied life to Ethan. Yes, this is the actual port that was in my baby's heart.



Amazing. Just amazing.

And, finally...HAPPY BIRTHDAY ANGELA!!! We love you!!!

Other birthdays that we failed to mention...

Sept. 4. HAPPY BIRTHDAY TO OUR FRIEND, LORI!!! We love you.
Sept. 12. HAPPY BIRTHDAY TO MY BROTHER, KOLT!!! We love you!!!
Sept. 17. HAPPY BIRTHDAY ERYLEIGH MERIDIAN!!! We love you sweet princess.

AND, a very special HAPPY BIRTHDAY TO Andrew Parks Moreland on September 19th! I was blessed to be present for your birth and we just couldn't be happier that you are here!

Hugs, Smiles, and Blessings to you all.

Whoa, it's been a while!!!

Ok, so...a lot has happened over the past couple months, but since I have not been diligent in writing, surely I will forget something and so I will just summarize.

Fourth of July, we went up to Bruce & Paula's house at Lake Glenville- what an awesome time we had!

August 2-5. Ethan and I flew to Kansas City, MO for the NDSC national Down Syndrome convention. This year was tough for me and it's my third one. Thank God that Scott's mom, Lynda, joined us there. She saved my sanity by watching Ethan one night so Robbin and I could go out! Ethan had a meltdown from too much stimulation- I don't know. I just know that he turned into the spawn of Satan and I about lost my mind. We got to meet some wonderful new friends and see some old ones too. All in all, we hope to go to Boston next year!!!

August 3. HAPPY BIRTHDAY TO SCOTT!!! He was able to travel to Greenville, SC to see one of his favorite bands, Disciple. He had a great time and was even able to hang out with the band afterwards in their tour bus! Such the groupie!!! LOL!

August 5-9. Ethan and I were then off to Houston, TX!!! I met Kimberly through Downsyn.com and she quickly became one of my closest confidantes and friends. I love her Joel. Besides my allergic reaction only 2 hours or so into the trip and my emotional roller coaster coming off of KC, the visit was lovely and we can't wait to see them again!!!

August 6. HAPPY BIRTHDAY EMILY HOPE!!! We love you!
August 7. HAPPY BIRTHDAY CINDERS!!! We love you!
August 9. HAPPY BIRTHDAY JAIDYN LUCAS!!! We love you!
August 17. HAPPY BIRTHDAY SHEP! & LYNDA! & MIKE!!! We love you!
August 19. HAPPY BIRTHDAY ASHLEY ANNE!!! We love you!
August 20. HAPPY BIRTHDAY KRISTOPHER!!! We love you!
August 25. HAPPY BIRTHDAY SEBASTIAN HARRISON!!! We love you!
(Yes, lots of b-days in August!!! Kristopher is actually my nephew's middle name and it is spelled with a "C", but my brother has requested to spell it with a "K".)

My new job is going well. I really couldn't be happier. There is a lot to learn and I feel that I am not learning quick enough, but I know that the office is just going to be running wonderfully very soon!!!

Ethan was supposed to start Kindergarten last week, but he decided that he wanted his name to be "Ferris". He spiked a fever on Monday morning, requiring a trip to clinic. Result? Ear infection. Ok, he rarely ever gets them but that's ok. Antibiotic please...thanks. Tuesday...hospital calls at 6:45 am. Yeah, that's never a good sign. Positive blood culture = automatic admission. So, Ethan missed his first week of school due to an ear infection gone really bad. We were in the hospital Tuesday - Saturday and we were a bit rusty at the whole routine since we hadn't been in since November (PRAISE GOD!). So, take three on Kindy tomorrow!

I know I have forgotten something and I will try to keep the blog up better. Life has been BUSY!

Much love to all. *Muah*

But, I'm NOT sleepy Momma!!!

HAPPY BIRTHDAY DARLENE!!! WE LOVE YOU AND MISS YOU SO MUCH!!! *MUAH*

I know that I have been slack on posting lately, and I promise to give a more substantial update soon. But, until then...here is a little montage from last night.

Last night Ethan decided that he didn't want to sleep, so I got in bed with him to snuggle. Well...he then turned into Mr. Giggles! The video at the end is black, but you can hear him.

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*sigh*

I thought that I would spare everyone the day by day details...until now- simply because I need to get it out before I completely lose my mind.

May 8th - Pediatric Opthamologist

Ethan needed his eyes dilated which made him EVER so happy. Even better was the actual exam. He wouldn't keep his eyes open (because he was throwing a fit!), so they had to then put in numbing drops and then the prongs to pry and keep his lids open (ok- eyes are beautiful WITH lids!!! Totally creepy without!!!). That was torture. Long story short- prescription changed (more astigmatism) and he may have a cataract. We just got his new glasses in the other day...very cute.

May 9th - Potential School Visit

Ethan graduates from his school this year (June 1st) and his placement next year has been the source of anxiety for me. Another long story short- Ethan lost close to three years of his life to cancer and the treatment that was the good/evil of it all. Good of course that it kept my baby with me, evil because of what it did to him long term. For three years, we missed vital therapy sessions and he is now so far behind, it is very discouraging for me. So, I visited another school that he could attend and was pleasantly surprised. It is a self-contained classroom BUT the inclusive opportunities are great! And, the teacher does what she can to get that inclusive time. It is very hard for me to think of Ethan as being severe & profound, but that is what he is right now by all definition in correlation to his age. So, at least I didn't leave this meeting in tears like I did the other school- I was a mess!

May 15 - The Dreaded IEP/Transition Meeting

Good News/Bad News...Bad News first.

The majority of Ethan's development falls below one year. He is especially behind cognitively. I am having a very hard time knowing that Ethan is turning six in a week and is still developmentally a year old.

Good news...Ethan has made TREMENDOUS gains since he finished treatment! He is getting stronger every day and now it is not necessarily a matter of not being strong enough to do something, but him just taking the easy way out and then being stubborn about it. Boy, there is no argument that he has nothing wrong with his stubborn gene!

We have a 99% chance that we will get to go to school at the school I mentioned above. It is really what is best for Ethan, even though it is classified as a severe & profound classroom. And, I don't know about all the other states, but here in NC, the children with special needs have to be labeled (I hate, hate, hate this!). Ethan has been labeled TMD (trainable mentally disabled). Trainable? Like you train a dog to do tricks? See, I hate it.

Also, the school does not have after school care. This means that I need to find a daycare. Guess what? No one wants to watch Ethan! Why? He is school age and not potty trained, oh and has special needs. It was amazing how they were willing to help until I mentioned those facts. That is my new challenge.

I didn't cry at this meeting either. It was very strange. Our PT actually even congratulated me on it- LOL! I just want so much for Ethan and all of this just breaks my heart into a million pieces.

May 16 - Pediatric Dentist

Always a jolly time at the dentist! Especially for a kid with sensory issues...Good news- no cavities! And, his gums look better from the last time due to our great torture- I mean brushing sessions. Two of his 6 year molars are IN! I didn't even know it! And, his other two on the top are right there waiting to bust through. X-rays show that he is missing his #20 permanent molar, BUT not to worry they say! That is the one that gets pulled for braces anyway! HA! Oh, and he has worn his front teeth down so much from grinding that they are now calcifying and turning a beautiful shade of yellow.

May 18 - ENT/Audiology & Unplanned trip to the Pediatrician

Because Ethan is 6 and has NO words, I really wanted an ENT/audiology work up. Well, ENT shows that Ethan has a beautiful infection that has green gunk piled up in his ears (not infected yet though) and it's the same junk coming out of his nose. His throat is also fire red (not strep though). This explains Ethan's recent eating events...So, due to the fact that Ethan's ears are not in any condition to be processing for an audiologist, we had to reschedule that. Of course that is how it works since my two in one appointment has now turned into two with two co-pays (grrrrr). So, we now have omnicef and a new script of Rynatan.

I also asked about apraxia. My ENT feels that this is what we are dealing with, but didn't want to tell me until after the audiology report. Yeah us. Verbal apraxia. Woohoo. Looks like I will be waiting even longer to hear Momma...

About the unplanned trip to the pediatrician...this morning when changing Ethan's diaper, his penis was red and had a white, pimple-like bump at the tip. I thought it was just yeast like he usually has after antibiotics, but it didn't come off. It was a white bubble (ew). Well, the nurse wanted to have me bring him in, so I did. Bacterial infection on his little manhood. We had to pop it. Poor baby- it hurt him so bad. But, the pressure needed to be released and the PA needed to culture it. The good news is that the omnicef will now treat his upper junk, chest junk, and now the lower junk.

That's all...I think. I am proud of how far he has come, that is not it- I am just upset that he has had to go through SO much and it is just a reminder to me everyday of what he did have to go through. Have I told you lately how much I hate cancer? Congratulations if you made it this far!