Kids Eat Clinic

Yesterday, Ethan's teacher accompanied me and Ethan to his feeding clinic appointment at 4pm. We didn't leave until after 6pm. We covered lots of ground. Here's how it went down...

Ethan refused to sit in the regular chair, so he had to then sit in the modified seat with tray. When it came time to eat, he pushed the food away and also tried to grab the plate and throw it. He also immediately went hand first into the tastefully crafted butterscotch pudding and proceeded to- finger by finger- remove said pudding into his mouth. Mary and I had hoped that maybe he would showoff and begin to self-feed again...nope. There will not be any self-feeding any time soon, unless he decides to.

The ear tubes have really thrown him for a loop. It has affected his senses as a whole, his equilibrium, his swallowing, his desire to self-feed...but by golly, there isn't any fluid in there! Yes, I am rolling my eyes because if it's not one thing, it's another. We have to start all over with self-feeding. Oh well- we move forward.

Ethan is continuing to lose weight. It has been concerning me for a while, but for the first time, it is concerning to a doctor too! Over a year and half ago, Ethan weighed 42 pounds. His BMI was even a tad high for his age and height, so we cut back on extra calories like the Carnation Instant Breakfast (CIB) that we put in his milk for that little extra. Six months ago, he was 35 pounds. He was holding steady at 36 pounds the past few months until recently. Yesterday, he was 33 pounds! When people see him after not seeing him for a while, the first comment is "Oh my, look how much he's grown!!!". Well, we thought that he was just growing taller without gaining the weight because until a few weeks ago, he was walking a significant amount in his walker. Well, he has grown a centimeter in six months- ONE CENTIMETER! There is something not right about that. So, we are going to recheck his thyroid. His labs have also been ordered to check everything- kidneys, liver, sodium, proteins...The blood test should be able to determine how he is absorbing his nutrients. I mean, Ethan eats. It may be a struggle and I may have a handful of my own hair pulled out afterwards, but he does eat. Keep you posted on that...

So now, we get to give a serving of "Yummy Pudding" and "Yummy Oatmeal" to Ethan everyday. The pudding basically consists of a pudding packet with whole milk, CIB, oil, and something else. The oatmeal is just an instant oatmeal packet made with half and half instead of water. Ok, that's like an extra 400 calories per day!

Now, the good news! Ethan has been on a waiting list for Vital Stim Therapy. A very long waiting list. Well, he's in! We begin therapy on June 2nd. Ethan will HATE it. It will be TOUGH. It is not guaranteed to work. But, it COULD work. We HAVE to try. It is very intense- hour and a half sessions, three times per week for about 5 weeks. Fun times- wish us luck!

That's how those 2 hours+ went down. Ethan hated me afterwards. Isn't it great being Mommy?!?!?! :-)

Ethan's IEP today

I think that Ethan has a great team on his side! We are not inundating him with goals that he cannot achieve, we are going to concentrate on specific tasks in order to get to the next level. Not to say we weren't doing this before- we were just trying to do it all too soon. Ethan needs concentration on a certain task in order to grasp it.

His latest behavior problems also come into play with how we will approach therapy over the next few weeks. We will be concentrating on oral motor skills and putting his walking on the back burner. We know that he can walk, so it's not like he will be losing too much skill there. We do, however, need for him to keep his hands out of his mouth in order to achieve any goals in ANY other area.

Ethan is incredibly stubborn, so this is not an easy job for any of us on the "team". Wish us luck!

Happy Mother's Day!

I would like to say HAPPY MOTHER'S DAY to all the Mommies out there! I would also like to take a moment to reflect on those who have lost their mother's or even their children. My best friend, Karen, lost her mother a couple of years ago and her precious Olivia in February. Today, is especially difficult for her, so if you could say a prayer for her and any other who is mourning today, I would appreciate it- thank you.

Happy Birthday MOMMY!

I couldn't do the formal shout out to my Momma for her birthday yesterday! So, a day late- here it is!!!

Happy Birthday Mommy! We love you! We hope your day was great!

Ethan...grrr.

Ethan has been an absolute pill for the past couple of weeks. He has gone backwards developmentally- it is quite frustrating. Even school is on the one-way ticket to Wits End with me. I have been given some ideas as to what could be going on with him. Lots of things lead to his ear tubes. One idea is that he has had fluid in his ears for so long that now that they are draining out, the overload of hearing sense has thrown him back into "comfort zone" which equals not walking and hands in the mouth. We are having such a time with him and it very well could be a toddler-like behavior, but the timing is quite coincidental. I have calls into doctors and he sees the behavioral pediatrician on the 19th for feeding clinic. We'll see...pray for us.

My First Open House

Last night, I held my first Open House for Uppercase Living. Five of my friends came and we enjoyed each other's company while looking over the beautiful expressions that UL offers. I am especially excited to see the custom expression that we made for Olivia. Thanks ladies for coming and supporting me!!! *muah*

A couple of friends were with me until almost midnight because of a horrible storm that was ripping through our area and then camped out around their homes. This was tornado-type weather and there was even one spotted not that far away from here. So, we just chatted away with lightning as our background.

CONGRATULATIONS RENEE!!!

I would like to congratulate our friend, Renee Garcia over at Life With My Special K's for winning the Military Mother of the Year Award!!! Renee is a mother of four children, wife to Frank, advocate for Down syndrome...just to name a few. Frank is currently in Afghanistan serving our country in the Army. This is Frank's second tour over to the Middle East. Renee and Frank's third child, Kennedy, has Down syndrome and also went through the nasty "L" word.

You can read about Renee's win here. CONGRATULATIONS RENEE!!! YOU DESERVE IT!!!

Reece's Rainbow

My friend Meredith over at Cornish Adoption Journey adopted two beauties from Ukraine over 8 weeks ago. The adoptions were made possible because of Reece's Rainbow- a Down syndrome adoption ministry.

(copied from Meredith)
"There are children all over the world in need of a family, love, and basic care. Many of these children have disabilities and are placed in mental institutions at the age of 4 or 5. In these places the children rarely live past the age of 10 and most die within the first year. Will you help to spread the word to raise funds and families for orphans with disabilities? Please visit Reece's Rainbow and see how your donation- however large or small- can help a child find a family. Look a little harder and you just might find the calling for one of them to be your own.

If finances aren't a way you can help, please look across their photos and say a prayer that each one will find their forever family soon. Reece's Rainbow is an International Down Syndrome Orphan Ministry which also advocates for orphans with other disabilities across the globe. Please "grab this button" and post it with a message to your own readers as well. It starts with ONE, but then grows exponentially. You never know, your own post may be one that finds a family for one of these precious children."

Grab This Button
Yes, those two beauties are Emma & Micah. Before and After so to speak. I recommend visiting Meredith's page to see the amazing things God has done for their entire family.

Feeling Nostalgic

I don't know why, but I have dug out a few baby pics of Ethan. As I took him to the doctor yesterday for what the doctor feels confidently is "just a virus" (grrr...), I looked at Ethan and just reflected on what a big boy he has become! Now, he has lost more weight- down to 34 pounds now. Part of that is because his appetite was junk the past few days, but as of breakfast this morning, it's picking back up thanks to strawberries & cream oatmeal and blueberry milk - yes, blueberry milk. I found it at the grocery store yesterday and just thought that it would be something that Boog's would enjoy. Momma was right ;-).

Anywho, I thought that I would share a couple pics of when Ethan was little. This was, of course, before digital cameras so the quality is not that great.



My favorite is the one of him laying down in his crib looking up at his mobile. I thought it looked like he was praying. So sweet...

A couple of reviews

This is a totally random post that has nothing to do with my family. Due to my manfeet always being barefoot or wearing flip-flops, I have cracks that even make me cringe to see. So, as I was in Walgreens last night, I see the Ped Egg at the checkout. I asked the clerk if she knew of anyone that used it and she said that she had it and LOVES it. Ok, so if you have seen the commercial, you know that you basically grate your feet and the "shavings" (bleck) go into the egg compartment. That thought alone made me want to vomit, but since it is only April and I have the next 6 months (at least) of barefootedness, I figured that I should at least give it a try. Ok- it's awesome. Yes, the shavings are nasty to think about, but really just look like powder (ew, ew, ew, ew, ew...). I recommend it.



My second review is of the movie, "Forgetting Sarah Marshall". Scott came home from work early today and we decided to take advantage of the chance to go to the movies. We were originally going to go see "Baby Mama" because Scott has a serious crush on Tina Fey- seriously, she's on his list. LOL! Turns out that movie started too late for us to see and return to get Ethan in time, so we got in just in time for FSM.

I was prepared for some completely inappropriate humor. I knew that main character goes full monty in the beginning of the movie. I saw 40 year old virgin and didn't think it was incredibly funny, so I just looked forward to the time Scott and I were spending together. Turns out, the movie was really funny! The English actor in the movie was hilarious, Mila Kunis is stunningly beautiful, the scenery is awesome, Paul Rudd- well, I love him. It was not money wasted for us- we had a fun time. The only uncomfortable part would be sharing the theatre with a much older couple...seriously 30+ years older.

Now, it will likely be another 6+ months before Scott and I can go to the movies again unless he figures out a way to go so he can see his Baby Mama crush, Tina Fey.

Special Olympics

Yesterday, Ethan participated in his first Special Olympics. It was nothing like I expected- more like a field day really. It was all fun and good times, except I had Ethan stand/walk the entire time. The grounds were wet and he didn't really want to be held, so he had to stand. He loved the track, so next year we may sign him up for relay! The montage is of the day, so it includes his classmates.


2008 Spring Special Olympics

Uppercase Living

First of all, thank you to those that cheered me up from my funk yesterday. I felt much better today. THANK YOU!!!

Now, my big announcement: I am now a demonstrator for Uppercase Living!

Never heard of it? I hadn't either. When I was back home in California, my sister, Kim had these beautiful expressions on her walls. They added so much character to her home! She showed me the catalog and I was in love! When I returned back to North Carolina, I contacted another demonstrator. I found out that there are hardly any representatives in my area, so I would essentially be coming into the company when it is new and fresh. Sounds good to me!

Yes, this is a direct sales company. But, the difference about Uppercase Living for me is that I think that it is a fabulous company that can bring happiness to many homes! Anything that you order is by your own preference, so I don't need to have stock on hand or try to pressure people into buying things. What you buy is truly what will bring more to your home! My out of pocket expense is minimal and I am hoping to make that back within a month.

I really needed something that I could do from home and still have the flexibility for Ethan. That was my challenge. Nobody would watch him afterschool and nobody would hire me now with my limitations for him. Financially, it really put us in a bind. So, I am beyond happy that I will be able to contribute back to my family! Another great thing is that Scott and I can work together on different projects.

I truly believe that God put this opportunity in my lap. I have not worked since January and we continue to be provided for. It is truly amazing!

If you would like to see Uppercase Living a little closer up, log on to Uppercase Living, go to the Customer Corner. You will need to register, but it's free and super easy!

Demonstrator ID: 436564
Token: Faulkner

I look forward to hearing from everyone! Tell me what you think and better yet- let me know if you would like to host your own Open House! ;-)

Bad days

I don't feel myself. I am trying. I'm tired. My hands are acting up. I am going to a at-home party in a bit. Maybe putting on some makeup will actually help me feel better.

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. :-)