I was asked by a friend's daughter, Kayleigh, if we would participate in her National PTA Reflections Project. The theme this year is: Beauty is...
Today, we met up with our friends to let Kayleigh have fun taking pictures of the kids because her first thought when needing to define beauty was: Children with special needs. {awwwwww!} I couldn't agree more. Here are some of the pics that she captured of Ethan. Quite the talent for 15, if I do say so myself! Thank you Kayleigh!
The vet called yesterday with Shep's pathology report. The report really didn't offer any definitive answers, but it did say something to the effect that there were differentials of either fibrosarcoma or tissue sarcoma, both of which are cancers. She said that we would have to have a biopsy done in order to know for sure which one we were dealing with and at what stage, etc.
This is where it gets tricky. If we were to go ahead with the biopsy, the vet would just remove the tumor because he would have to be sedated anyway and we already have a strong suspicion of what the tumor is so all the biopsy would say would be to remove the tumor and we wouldn't put him through two procedures, plus the cost of two procedures with sedation would be crazy high. As of right now, the tumor is not causing him any pain and it has, likely, not spread to any other organs.
So, unofficially officially Shep has cancer. It is most likely the fibrosarcoma. With how quickly the tumor has grown over the past few months and with the pathology report, the vet is fairly sure that this is what it is.
The next step? Keeping him comfortable. The pain meds that we got for him last week have brought back our Shep! He has more energy and is being playful. The tumor will likely continue to grow and we will just have to keep an eye on it. Shep's bloodwork and urinalysis were fine, so that's good news. I do not think that Shep is ready to go yet and I do think that he will tell us when he's too tired anymore. So, we will continue to love our puppy, keep him happy, give him an extra scrap every now and then, take pictures, enjoy our time left- whether that's a limited amount of time or years, and keep him comfortable. That's our goal right now.
Thank you to everyone who has been so supportive of this time.
Last night, Scott came in the house and said that Shep wasn't moving hardly at all and that he found additional small masses on his chest in addition to the larger mass on his chest that has also grown.
Shep is our 11 year old Chow Chow/German Shepherd baby. We got him 2 weeks before our wedding. We hadn't planned on getting a dog, it just happened when our neighbor at the time came over with two puppies in her arms thinking that they belonged to us. There was a boy and a girl, but the sweet boy winked at me and therefore, he stayed. The plan was to put up flyers for the lost puppies and that the owners would come back for him, but they never came. I named him Shep- original, I know- because he looked more German Shepherd when he was a puppy.
I had taken Shep to the vet over the summer to have the mass checked out and the aspirate showed abnormal cells. It was recommended that we have pathology done on a sample to identify the abnormal cells, but we couldn't afford it which totally and completely broke our hearts.
I posted on Facebook about Shep's condition last night and many wonderful people said wonderful things. In addition, mention of putting an animal down came up many times. Yes, I know that he is old, but I am not ready. I am not ready to think of our lives without Shep.
I took Shep to the vet today and she is now referring to the mass as a tumor and she also confirmed that it was much larger. She is sending out the pathology slides today and we should know what's going on by next week. I asked her about "worse-case scenario" and she said that it really depends on what it is. It could just be a benign tumor, or it could be cancer. The look she gave me makes me think that we are not going to get good news next week.
I am SO not ready. I know that Scott is not ready. The look of worry on his face last night was horrible. Scott and Shep have an incredible bond...oh my gosh, I.AM.NOT.READY.
I just found a planner from 2004. I had forgotten all about this planner. Scott had started "journaling" day by day in the beginning and I took over towards the end...
Friday, February 13th
Ethan has fever @ 105.3
Found out Ethan has ALL
Did bone marrow check
Blood transfusion, IV's started
Decadron & Zantac
12:20am Get on plane to NC
02/14/04
Arrived in NC 9:30am
Arrived at hospital 1pm
Platelets
Decadron
Zantac
02/15/04
Decadron
Zantac
02/16/04
Spinal check for ALL
No cells
Spinal methotrexate
Bone marrow check
Platelets
Decadron
Zantac
02/17/04
Had port-a-cath put in
Started vincristine
Decadron
Zantac
02/18/04
Decadron
Zantac
02/19/04
Bad diaper rash
Decadron
Zantac
02/20/04
Had L-asparaginase shot
Decadron
Zantac
Went home!
02/21/04
Threw up
Made everyone sick
Decadron
Zantac
02/22/04
Decadron
Zantac
02/23/04
Came to clinic
Spinal check
Spinal methotrexate shot
L-asparaginase shot
Vincristine
Decadron
Zantac
Diflucan for rash
02/24/04
First night in house!
Decadron
Zantac
Diflucan
02/25/04
Decadron
Zantac
Diflucan
02/26/04
Clinic
L-asparaginase shot
platelets
Decadron
Zantac
Diflucan
02/27/04
Bad diaper rash
Diarrhea
No eating
Called Dr. @ 6:30pm
Shaky, eyes rolling
Called Dr. back @ 11:30pm
Decadron
Zantac
Diflucan
02/28/04
Got to ER @ 12:30am
Started IV antibiotics
Took blood
Got to room at 3:30am
Got morphine
Got to sleep @ 4:30am
Decadron
Zantac
02/29/04
Found out you have a blood infection = min. 10 day hospital stay
Decadron
Zantac
Diflucan
03/01/04
Decadron
Zantac
Diflucan
L-asparaginase shot
Vincristine
03/02/04
Started losing some hair
Decadron
Zantac
Diflucan
Hard times getting to sleep
03/03/04
Decadron
Zantac
Diflucan
Red blood transfusion
Found out that you are O- blood, we thought you were O+!!! {He is actually O+, O- is just universal blood}
Rough night sleeping again :(
03/04/04
Infection id'd as streptococcous pneumonia
Decadron
Zantac
Diflucan
L-asparaginase
Platelet count: 23
03/05/04
Chris turns 30!
Slept better!
Decadron
Zantac
Diflucan
Platelets still 23, other counts coming up
03/06/04
Decadron
Zantac
Diflucan
03/07/04
Decadron
Zantac
Diflucan
Counts still coming up slowly
Platelets up to 32!!
Blood in stool
03/08/04
Decadron
Zantac
Diflucan
Vincristine
Dr. McLean is keeping us here another week...
Platelets: 52!
WBC coming up very sloooowly
03/09/04
Decadron
Zantac
Diflucan
no nap
nurses call you "no nap Ethan"
03/10/04
Decadron
Zantac
Diflucan
no nap
03/11/04
Decadron
Zantac
Diflucan
Rachael came by to visit
Platelets up to 99!!!
Going home Sunday! WOOHOO!!! :-)
Mommy left the hospital for the first time to p/u Madison
Cousin Benjamin Justin born at 10:50pm, 7 lbs. 12 oz. 18 1/2 inches
03/12/04
Decadron
Zantac
Diflucan
T*Potts being watched for pre-eclampsia
Delaney Claire born 5:18pm via c-section, 4 lbs. 4 oz. 18 inches
03/13/04
Savannah turns 1!
Decadron
Zantac
Diflucan
Platelets 171!!!
Normal range! :-)
03/14/04
Aunt Kamrin turns *18*
Decadron
Zantac
Diflucan
Last antibiotic 8am
GOING HOME!
03/15/04
Clinic 8:30am
Bone Marrow - Sedation Suite
REMISSION!!!
03/22/04
Back to school- everyone missed you so much!!!
03/26/04
Methotrexate (MTX) infusion
03/27/04
MTX infusion
03/28/04
Go home
04/01/04
Go back to work - off early
-Clinic, rec'd blood/fluids
04/02/04
Stay home w/Daddy
04/11/04
Samantha's birthday
ER- viral infection, admitted
04/14/04
GO HOME!
04/16/04
Clinic - MTX canceled due to SEG's still too low
04/17-18/04
Good weekend!
04/22-23/04
MTX
04/24/04
Go home
04/25/04
Mouth sores form already :(
Stopped eating
04/26/04
Went to school - all you would drink was chocolate milk
04/27/04
Took you into clinic fearing your counts were low/dehydrated. They admitted you and started you on fluids.
04/28/04
Blood
05/02/04
Started TPN (nutrients in IV) since you still would not eat/drink
05/04/04
Ate pudding!!!! Yay!
04/06/04
Go home!
05/08/04
Gramma turns 50!
Auntie Ang comes to visit!
05/10/04
Counts up!
05/11/04
Take Ang back to CLT
05/12/04
WORK! SCHOOL! Great day!
05/13/04
Clinic 8:30am
LP 12pm
MTX 5pm
05/14/04
Fab Four Reunite!!! CZ, DD, & SLD CLT 7:35am...9:30am due to flight delay
05/15/04
GO HOME!
05/16/04
Mouth sores start
05/25/04
Ethan turns *3*!!!
06/03/04
MTX - 7pm
Kay Ann Sohn brings dinner
06/04/04
Aaron & Debbie Wilkins bring dinner
06/05/04
Allison, Jerry, Mogan, & Holden Barnes bring dinner
06/09/04
CA!!!
06/11/04
Aunt Kamrin's Graduation!
The end.
Bringing Kellsey Home: iPod Touch Giveaway!!!
Go over to Renee & Frank's adoption blog, donate $10 and earn an entry to win an iPod!!!
Ok, what would you have done?
Yesterday, I show up at school to pick up Ethan and there is another woman who just arrived as well. She pulls an infant carrier seat out of the car and I see that the baby inside of it is not strapped in/buckled!!!!! I was on the phone with Kamrin when I saw it and I just couldn't believe my eyes! This woman was walking more like the baby was a nuisance, it made my blood boil.
So, she goes into school and gets her child. She also had a, I'm guessing, 2 year old with her. She swatted him into the car and this is when I notice that he does not have a car seat! The woman proceeded to throw the baby seat into the backseat and sped off. I wanted to get a plate number so I could call the police, but she left too quickly for me to do that. I could have said something and I didn't. Would you have? I have felt bad about this since yesterday. What if something happened to those babies? To me, it was the same as letting a drunk person drive home because it's not your business. What if that drunk person injured/killed someone else because you didn't speak up?
Oh, the horror.
My friend, Paula, was home for a visit from Louisiana over Labor Day weekend. We celebrated Parks' 2nd birthday a little early! MISS YOU PAULA!!!
Saw the Mystery Machine in a restaurant parking lot. The cardboard notes in the windows say, "If you take a picture, please leave a tip". And, where exactly was I supposed to leave a tip?
Saturday was Delaney's first soccer game. SO cute!!! I love watching the little ones play!
Delaney and her Daddy, Chris, after the game! We missed Theresa and Madison because they were at a Williams Syndrome picnic in Raleigh.
Auntie Boo and her little soccer player
Daddy teaching Ethan how to kick the ball. Can you say, Awwwwwww??? ;)
More kicking. I have a video too... :)
I braided Hope's hair today. She is incredibly awesome to sit through it for being 19 months old! I love her little curl ponytail- which is natural, I didn't curl it. I think it turned out pretty cute!
****************************************************
That catches me up to today, I am pretty sure.
Yes, that is an aerial shot of Mariposa. I miss you.
PB = Home Always. I miss you.
Mammoth Pooths = Pure camping happiness. I miss you.
More MP. I really miss you.
Merced River = Refreshing Beauty. I miss you.
Merced River Rapids = Sound of home. I miss you.
Hume Lake = Where God entered my life. I miss you.
************************************************
You could say I am homesick. I miss the comforts of home, I miss my family, I miss my friends. I just miss.
So, Ethan lost a tooth this morning. It had been loose for a while, but not nearly ready enough. Even the dentist said last month that it would likely be a while before it came out. Mary asked me last night if it was loose, but I just thought it was as loose as it was the day before. Well, this morning I had Ethan in bed with me and all of a sudden, he started crying. It was pretty random, but he was over it fairly quickly. Then, I thought I saw blood dripping from his lip. Hmmmm, I try to look (still dark by the way) and nothing. I then notice the blood drip marks on my sheets! Ok buddy boy, where are you bleeding? That's when I see this tooth hanging on by practically nothing. Scott held his arms while I popped it out.
I am thinking that he made it really loose the day before when he got mad and decided to bite his shoe aggressively. We'll see how his teeth shift now, because he doesn't have room for a permanent one to come in and his teeth will shift with the gap if nothing tries to come up in its place. Could get interesting...
*Pictures to be added later*
I am at the gas station about to grab my receipt after pumping 16 $2.42 gallons of gas and this man is walking towards me after leaving the mini-mart. I am thinking that this man works for the station and is just being nice after he said "Good morning, and How are you?", but once he continued, I realized that he wasn't an employee. The interaction continued as follows:
Me: Good morning. I am good, thank you.
Man: You're a pretty lady.
Me: Oh, why thank you.
Inquisitive man: You probably have a husband, don't you?
Me: *slight chuckle* Yes, I do. Almost 11 years, thank you.
Bold man: Figures. That is one lucky man.
Me: *laugh* I would say so. Maybe you can remind him of that sometime.
Happy to oblige man: Oh yes ma'am. I would in a second tell your man how lucky he is to have a fine looking woman like you.
Me: *getting into car before spontaneously combusting from laughter* Well, aren't you sweet. Have a great day.
I told Scott that he had competition. LOL.
First, thank you to everyone who has enjoyed watching Ethan's video walking as much as I do! I have watched it multiple times, it just doesn't get old! He has come SO far and has worked SO hard! I am so proud of my boy!
Back to the Ah Ha...
I took E to the doctor today because last week I had noticed on multiple occasions that he was overheating. His cheeks would get way flushed and his temperature would be that of a 101-102 fever. Once I had him chill out and relax, it would go back down to around 97, which is normal for him. I began thinking- he really doesn't sweat. I wondered if the lack of ability to sweat was having him overheat. ???
Well, the answer is that I was right...kinda. His thyroid appears to be normal right now and he has sweated before, BUT he is on Robinul which is a drying agent to help keep his secretions under control. Unfortunately, it can also keep him from sweating which can lead to overheating. AH HA.
Luckily, the weather has been just perfection the past few days so I really don't think we will have to worry about overheating much again until next summer. We just have to make sure that he is very hydrated. No problem. Easy fix. Whoa, wait- did I just say "easy fix"? Say it isn't so! LOL!
Easy. I can get used to that.
*TISSUE WARNING!!!!!!*
Look Mom, No hands!!!
Yes, I cried...tears of happiness, of course!!! :-)
I decided to take Ethan to his old school to see the staff that love him so much. I hesitated because I didn't want to confuse him- he would fuss every time we drove by the school over the summer and I would always respond with "that's not your school anymore". Well, he was very excited to be back on MES grounds and even happier to see Mrs. M., Mrs. B., Dr. A., Mr. S., and Mr. B! Ethan had a good time and loved that Mrs. M. took him outside to swing! He would walk to her while smiling- so sweet!
First Week of School
Tuesday marked the first day of school. I was nervous because of the new location of Ethan's classroom. The only thing that made me feel better was knowing that he still had Ms. Mary for his teacher. Will the kids at the new school be as accepting? Will they want to get to know him? Will he have the same opportunity to bond with the typical kids?
By the end of the first day, I saw about 7 kids from the afterschool program stop by the classroom and ask about the room. Ethan was curious and went up to them and started telling them "hi" in ESL (Ethan sign language). Mary proceeded to tell the kids what Ethan was saying and they immediately learned how to communicate to Ethan! Nervousness fading...
By Day 2, Ethan had already proceeded to be the Supa-star that he is and making himself the center of attention on more than one occasion. The kids love to come in and play with him. It is a treat and reward for the typical kids to be able to come and spend time with Ethan!
Everyone has been very nice, and while I *hate* the drive to get there, things are not that bad. We still wish that we were at MES, but we will make lemonade out of these lemons, and Ethan will just continue to teach others how awesome and amazing kids with special needs are!
Tis the night before another schoolyear and I am killing myself trying to get these darn cutesie pictures put on the blog! Grrr....
Anywho, I will edit later and hopefully make things look prettier.
My friend, Bethany, was holding a clearance sale from her
online boutique, Polkadot Platypus, and she had these cool skivvies!
(Side note: You must check out PP! The stuff is super cool AND shipping is LIGHTNING fast!!!)
I spent two days trying to get a good picture of Ethan in his new skivvies. The first night, he just cried, then I got some pretty good ones of him walking/standing and just all around being his cute self.
I can't really explain why I can't stand to see RIP when someone passes away. I think it seems impersonal and easy, like Xmas at Christmas time- can't stand that either. So I'm weird, deal with it. LOL!
Warning: MORBID THOUGHT COMING
Please do not put RIP after my name when I die. Trust me, I will be at peace with God. Thank you.
C'mon, you know that if you ever watched Saturday Night Live back in the early 90's, you know who Jack Handey and his Deep Thoughts are! LOL!!! I have searched Youtube and such for old clips of them, but never found any. Wouldn't ya know that there is a website!?!? Whodathunkit?
Now, I have added a widget to scroll Deep Thoughts during the day. It's over there =====>
And, here's the website: http://www.deepthoughtsbyjackhandey.com/
My favorite one growing up was:
If you ever drop your keys into a stream of molten lava, forget about 'em
Because, man, ...they're gone.
Ok, back in May Ethan had a sedated EEG and MRA. We ended up in the day hospital until around 9pm because Mister Man decided to swallow his tongue and desat down into the 60's. Once he started waking up from sedation, after HOURS- which was SO unlike him, he was- well...a tad drunk. It is too funny...
(Those on reader, there is a One True Media video below)
"Drunk Ethan"
There are walls at Walt Disney World, Epcot, called the Leave A Legacy walls. They have pictures of guests etched into these walls- concrete/granite/something hard, LOL. When we went for Ethan's Make A Wish trip, Ethan and Grandma Lynda had their picture taken for the Leave A Legacy wall. We got a mailer with the picture and coordinates for where they were, so if we ever return, we can find it.
Well, many friends were fortunate to travel to WDW for family vacations recently and I passed the coordinates along to them in hopes of getting a picture, and for me to know that it is really there.
Thank you, Chris! You're my hero! ☺
I am feeling better, some days/weeks are just (obviously) better than others. Thank you to everyone who reached out to offer love and support. *muah*
For the past few weeks, it has totally hit me that we don't fit in anywhere. Everyone loves Ethan, OF COURSE, but that seems to be where it has ended. There have been times over this summer that it becomes painfully obvious as I see pictures and stories of get-togethers of all the kids out of school for the summer. Play dates. Park time. Swimming.
We are not part of any of it. Honestly, we just probably wouldn't fit in anyway. Ethan is not going to go running around a park with other kids his age- or period for that matter. He's not going to talk either and other kids are not going to necessarily understand why, yet.
I can't remember the last birthday party Ethan was invited to (not including Madison or Delaney). He's just not thought of to be included in anything. That has been getting to me. Maybe our friends really aren't our friends- maybe they are just friendly peers. Then again, if he were invited to say a Young Chef's party, we wouldn't go anyway because it is not something that Ethan can do yet (we have tried).
Rambles. We are stuck in the middle. Neglected on one side, but likely unable to participate if included. It sucks to be stuck. It is very isolating.
My good friend, Chris, is my go-to guy for all anything computer. He is my own technical support, and I love him for it. He broke the news to me yesterday that my less-than-six-months-old hard drive has died. He tried to fix it, but it has gone into hard drive failure and unable to be brought back. Luckily, it is still under warranty so Chris has sent off for a replacement and will soon have my computer back to me.
So, what's been happening?
* Per advice from Health Law, I am working on getting more detailed recommendation letters from doctors for the feeding program and resubmitting vs. appeal.
* I have 2nd and 3rd opinions set up next week at Duke and a dyspagia center in Raleigh.
* I still have not heard from the school regarding Ethan's official placement yet, which is beginning to pi** me off. It seems as though the kids that they told me would be worth moving the classroom across the county for are not there and the classroom may only have one other child in it. I can tell you right now that if that turns out to be the case, be prepared to be hearing about my stomp on into the EC Director's office.
* My friend, Amber, from high school came out to North Carolina for a week with her girlfriend to visit family and drove up to visit with us for the day!!! Amber and I hadn't seen each other in close to 16 years! I am the dork and did not get any pics, but she did. As soon as she posts them, I will steal them and post. LOL! It was so great to spend the time with her! Our day went by way too fast...
* My friend, Bethany, was on her way to Hilton Head, SC for vacay with her family and stopped in Raleigh, so we headed over to have dinner. We ended up staying (THANK YOU KYLE!!!) and I was able to step into the crazed world of a NKOTB fanatic as we watched a show via webcast!!! =)
* After leaving friends in Raleigh, we were headed to DC because my sister, Kim, was in town for a romance writers convention. We had time to kill, so we just kept driving and ended up in the Outer Banks at Nags Head and Kill Devil Hills. We have lived in NC for almost 6 years and had never made it over to OBX. Along the way, we passed the most disturbing billboard for Dirty Dick's Crab House that read: I got my crabs from Dirty Dick's. And then, we passed another billboard that read: Try My Nuts. Nasty.
We had Ethan's swimwear, so we took him to the beach. The water was pretty cold and Ethan wanted to eat handfuls of sand. Ugh. The kid won't eat a cheerio, but sand looks great! *eye roll*
We stayed with our friends, Dennis & Eleanor (Computer Guru Chris' parents), in Virginia outside of DC. WHAT A HUGE BLESSING!!!
* We met Kim at the hotel in DC by 10am. We navigated through DC without any major map and found our way down to the monuments. We got super close parking thanks to Ethan's handicap placard and proceeded to check out some bits of history. After checking out Abe, we walked down to the WWII memorial--oh my, BEAUTIFUL. Ok, real quick though- the reflection pool is NASTY!!! My previous desire to jump in it was quickly dissipated as soon as I saw foam and slime all over it. Blech. Then, we walked the wrong way because if we would have walked to the left, we would have passed the Vietnam wall on our way to the WWII memorial, but instead we took the LOOOONG way. Due to time constraints, we drove by Jefferson and tried to do a drive-by of the White House, but it wasn't happening. We did see the President's helicopter fly over though. Woot woot. Drive-by tourism is awesome, I highly recommend it. HAHA. We had a great lunch with Kim and I tried to embarrass her all I could by posing as papparazzi. What are sisters for, right!!??!
* Dropped Kim off at airport and then proceeded to miss the sign for the highway we wanted. Ended up in Maryland, half way to Delaware. Took 2 hours to still be in DC. Kristen & Scott end up beginning to be very ugly to each other due to fatigue and aggrivation. Ethan is, surprisingly, wonderful.
* We opt for a more scenic drive home than I95 and end up at James Madison's home, Montpelier. We contemplate crashing the private garden party that we suddenly became a part of, but opt for just seeing the home for free. =) Beautiful place!
Until I have my computer back, you can see the pictures from the trip here.
* We miss our exit in Charlottesville to stop for dinner so we continue on. Next stop: Lynchburg. It is after 8pm when we pull into the parking lot at Cracker Barrel. I am exhausted and WAY grumpy. Ethan is tired, irritable, and HUNGRY. YAY for pancakes. Ethan {hearts} pancakes. While feeding Ethan, a sweet woman approaches our table. She says that she thinks that Ethan is adorable and that he reminds her of her son who recently passed away. We had a lovely and touching conversation. Her husband couldn't come over- it was too hard and too soon, but we did exchange info. Their little boy, Charlie, passed away on his 6th birthday due to a pharmaceutical error. Double check your kids' medication- pharmacists make mistakes too! I told Scott that the reason we took the wrong turn, spent 2 hours stuck in traffic, missed our exit for meal option #1 all because we were meant to meet this family. Suddenly, I wasn't so grumpy anymore.
* Bethany and fam came back through Raleigh on Saturday. Ethan and I went to have dinner, meet up with other Downsyn friends, and head to a Durham Bulls baseball game. Ethan was pretty good, except he wouldn't walk into the stadium, so I had to carry him and it was HOT. Especially hot because of the fleece blanket I was also carrying in case he didn't want to sit in his seat. We almost didn't make this trip, but thankfully Bethany talked me into it. We had a great time (sad that Nika was not feeling well, though!)!
* We are hoping to get together with Ms. Mary and Gracie (Ethan's favorite girl from school last year) sometime this week!!!
That's all...I think. And, that WAS the condensed version!!! LOL!
Appeals Court, here we come!!!
The letter is full of legal codes and blah, blah, blah's. What is not in code is how they, supposedly came to the final decision. I am not going to totally get into it right now because it is just so frustrating, and I am too tired to. Plus, I really want to talk to my rep at Health Law before giving out too much public info. I am sure everything would be fine, but you never know with court.
Will keep you updated as I can.
I supposed that I could elaborate on what's going on with the feeding program...
Long story short, the lady at the insurance is violating both federal and state guidelines by telling families that there is no appeal and that decisions are final. We have to be given a formal declination in writing with the right to an appeal hearing.
I have been in contact with the National Health Law Program, who are awesome btw, and they have contacted the attorney's at the insurance. They responded almost immediately with "WE ARE ON TOP OF THIS".
I do have high hopes for what can come of this. If all else fails, we stirred the pot. It is NOT ok for someone to think that they are God and lie to families like that. She needs to be brought down a notch and put in her place.
So, we keep fighting for the chance. That's what this is all about- a chance for Ethan to go to the next step with feeding and swallowing. He deserves a chance. No, we are not guaranteed success, but we can't achieve success without an attempt which is why I simply cannot understand why one of Ethan's doctors will not recommend for him to go to the feeding program. She feels that this is just Ethan. This is his neurology- he will always be a suckler because that's how his brain works. Well, you can retrain a brain- THAT has been proven. But, you have to do it sooner than later. The older Ethan gets, the less likely we are to be able to "rewire" his brain's processing.
The good news is that she is only one opinion. I have quite a few other doctors and therapists that are in favor of trying. I spoke with CHOP this morning and from what I have told them, they feel that Ethan is a good candidate. So, I move forward and keep trying.
Thank you to all who have been asking and praying. We appreciate it!
IN ACTION. I will- hopefully, prayerfully- have good news soon.
Today is the day that my sister's new book, Kids On The Doorstep, hits shelves. This marks her sixth book being published! Before I give you my review, I have to start by saying how PROUD I am of my sister's accomplishments! She works so hard- as a journalist, romance writer, wife, and soccer/swim/football/dance mom. She is always on the GO, I have NO idea how she even has the time to get her creative juices flowing for her novels.
Ok, so since I am the author's sister I have the distinguished honor of receiving an autographed ARC (Advanced Reader Copy). The day that my ARC came in the mail, I was already emotional because of my leg injury. I opened up my package from Kim when I got into the house. I had to check to see if she actually signed it because on one of her books, I joke with her that she signed it with "invisible ink" because she forgot to sign it at all. Well, she did sign it with a simple and yet very touching note. But what was inside got me. Her dedication page. I was not prepared for what she wrote.
To the mothers of the world: raising children is the most important
job we as adults will ever have, as they are our legacy and our future.
To my sister, Kristen, who wears the badge of motherhood with pride and
inspires people to love without reservation, without judgment, without
fear. She is a mama bear and a wonder to watch in action!
John Murphy gets the shock of his life when he finds three girls on the
doorstep. Once he takes them in, it isn't long before the little tykes
bring out his fiercest protective instincts. So when their mother shows up
at his Emmett's Mill Ranch, he's ready to do battle.
Except Renee Dolling isn't what he expects. She clearly loves her
girls and wants to make up for the past mistakes. John wants to trust her,
but he's got the girls to think about. Unless Renee can prove she's the
mother her daughter's deserve...and the woman this solitary rancher
needs.
~Back Cover Teaser
If you follow me on Facebook, then you have probably seen my status updates to read something along the lines of SBP bound! FEAR NOT! Lots of people had no clue what in the world that meant. LOL!#1: I called the hospital in Virginia. NOT HAPPENING. It is basically institutional care. Parents are only allowed on campus during visiting hours after 4pm. Nope. Not happening. I am very curious why insurance would approve an INPATIENT hospital stay versus an OUTPATIENT program??? BOTH are out of state, so it makes no sense. My dad says it's about funding for institutions. He may be right, and if so- this country is still in the backwoods, which is NOT ok.
#2: Haven't heard back from the vet, yet.
#3: I took Ethan to the doctor today because he is still having tummy issues and he won't eat much beyond a little bit of oatmeal. And, he is not drinking like he should. He is not dehydrated, thank goodness, but he has lost 2 pounds in the last week. He is so tiny and doesn't have any fat to lose, so 2 pounds is huge. He did drink a boost earlier and a milk- which the doctor said was ok if that was the only thing that he will drink. His poor tummy is so bloated and gurgly. I am supposed to get a "sample" to make sure he doesn't have something else going on in his tummy. That should be fun. (sarcasm, yes)
Why does Ethan keep banging toys on his head?!?! We tell him to stop and he thinks it's funny! It's like- "LOOK HOW HARD MY HEAD IS, MOM!". What the heck?!?!
