Welcome to the tube club!

I had to have Ethan at the hospital this morning for a scheduled sedated ABR (Auditory Brainstem Response) to check his hearing and a possible adenoidectomy. We did not anticipate a tonsillectomy since his tonsils are really small. The test was being done because we are trying to find an underlying problem for Ethan's lack of speech and language development.

Well, once the doctor was in there, he did not feel that the adenoids needed to be removed- so no A. Tonsils were fine too, so no T. No T & A for Ethan. What he did find was a LOT of fluid in his ears. So, we have now joined the ear tube club! His ENT nor I expected to be getting tubes today! He said that Ethan does not fall into the classic case of what is seen before putting tubes in- he rarely has ear infections. So, tubes it is.

The ABR shows that Ethan's hearing in his left ear is fine, but the test shows that he could have minor hearing loss in the right ear. The ENT feels that the test could have been affected by the fluid buildup and that we should retest the right side in the office on a regular basis. Even if he does have loss in the right ear, since his left ear is perfect, it would compensate the right and should not affect his S & L.

Now that Ethan doesn't have his port, they had to do an IV (thankfully after he was asleep), but removing it was awful. Poor baby screamed so loud! The tape they used was awful and it ripped every little hair off of his arm...my poor lil' monkey.

We're back home now and looking for a nap!

Support Ms. Mary!

Ethan's teacher, Mary Heaton, is on the Team in Training team to raise money for the Leukemia & Lymphoma Society. She joined the team in honor of Ethan and his fight against blood cancer!

Mary has been instrumental in Ethan achieving his academic goals this year and we are so proud of her for taking the initiative to train to run over 13 miles for Ethan.

In the process of Mary's training for the half marathon in Nashville on April 26th, she also decided to train for the full 26 mile marathon in Alaska! Unfortunately, Mary has injured her hamstring and she is unable to even walk either marathon, but that doesn't mean that her heart is not with her team and with ETHAN! She will continue to join her team in Nashville to cheer them on.

Can you please help her cause? Any donation is greatly appreciated!!! Support Ms. Mary HERE

Thank you! Thank you! Thank you! Thank you! Thank you! Thank you!

The Clock is ticking...

Yep, the biological one. Bad timing. Well, it's been ticking for a while but it's really been bad the past few weeks. I want Ethan to have a sibling so bad. I want it for him. I feel that he deserves it. I can't imagine my life without my sisters and brother and I think that Ethan having a sibling would do wonders for him. Have you noticed the I and not we? Of course, me being unemployed now doesn't help things!

I never thought that my children would be so far apart in age. I mean, only having Ethan during the time of our move and his leukemia treatment was a huge blessing. We were able to concentrate solely on him. Scott feels that if we have another baby, we are taking away from Ethan. He deserves all of our love and attention. So, I am torn because that then makes me feel like I want to take away from Ethan. That is not the case!

I watched some friends in church yesterday with their new baby girl. I watched them cuddle and smile at her. I almost cried. I want it again.

Part of this is selfish for me. I miss being pregnant. I want to experience it again. The other part is definitely for Ethan.

The Memory Keeper's Daughter

The Memory Keeper's Daughter aired on Lifetime last night. It is based on the novel by Kim Edwards about a doctor whose wife gives birth to twins, one of them having Down syndrome. Based in 1964, the doctor told the nurse to take the baby to an institution and then proceeded to tell his wife that the baby died. The nurse does as asked, but once she sees the horrific practices towards the children/adults at the institution, she leaves and takes baby Phoebe with her.

I have not finished the book yet and I now look forward to comparing the TV version against the novel. I feel that the movie captured many points that we even continue to battle today. Our children with Down syndrome ARE capable, they ARE beautiful, they ARE smart, they ARE aware! Our children with Down syndrome are not sentenced to a death sentence- they LIVE! Our children with Down syndrome are not mongoloids- they are OUR children.

Overall, I was very pleased with the movie (minus the awful hair style/wig that they had on Phoebe!). I recommend that everyone watch it/read the book.

*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...

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