Bad News #3

Ethan has a tummy something going on.  Virus?  Food?  Not sure.  It could very well be from his painting fiasco the other morning.  Let’s just say the child was nekkid and had painted the walls and floor with, um, “paint”.  Oh, and while he was at it, he gave himself some tribal markings on his face.

We know that he put some of the “paint” in his mouth, so we are wondering if that is what is causing his tummy issues. 

Poor thing has slept a lot today- so NOT like him.  And, it has been a real challenge to get him to drink, so pray he starts drinking better so I don’t have to get him an IV!

I think I am done with bad news for tonight…

Bad News #2

Our beautiful, loving, playful, sweet-spirited dog- Shep- may have cancer.  I took him to the vet the other day because he has a mass on his chest in between his two front legs.  Scott had noticed it during his bath last week.  It was not there when he was given a bath last month.  So, this mass has grown significantly in a month or so. 

At first the vet thought that it was just a lipoma- or fatty mass of cells, which is typically benign.  But, to double-check, she took an aspirate sample of the mass and another one that was down in the groin area.  The groin lump was definitely just a lipoma- no worries.  But, the one from his chest was surrounded by “different” cells.  The vet was surprised, but said that we would have to send a sample to pathology in order to know what the other cells were- they were just definitely not just fat cells. 

I asked if it could be cancer and she said “possibly”.  She took a picture of the slide from the microscope to post online to other vets to see if they would know what the other cells are, but I won’t hear from her until sometime later this week.  *sigh*

Shep is our first baby.  We got him two weeks before we got married, so he is almost 11.  We know that he is getting old- especially for his breed (Chow Chow/German Shepherd), but we are just not prepared to have cancer in our family again.  

We pray that the cells from the mass are not cancer cells and that it is nothing but a benign mass. 

Bad News #1…A picture story.

’s insurance has    our request to have go to the Children’s Hospital of Philadelphia (CHOP) for the intensive swallowing/feeding clinic.    They, once again, say that there is no appeal process, to which I say:   How can you tell someone that there is no appeal process?!?!  They say that gets enough services here in NC and it doesn’t matter if it’s “Not Enough” by my standards.  Um, hello you   ‘s.  It’s not just ME.  It is his doctors and therapists and teacher.  The people who are around this child everyday.  The people that are just short of ing, for the safety of my child, provided letters and documentation showing why needs such aggressive treatment.  Does it matter?  Of course not. 

We were offered an alternative at a hospital in Virginia, to which I ask:  Why will you send us out of state to Virginia but not to Pennsylvania?  It’s not like they are paying for my transportation to get there.  I don’t have an answer on that one yet. 

One thing about the other hospital, from what I was told and from what I have read, is that the parent does not stay with the child and it is an inpatient stay.  Um, no.  If you think that I am going to drop off my son at some hospital over 4 hours away from home, then they are !!! 

Tomorrow, I begin the appeal of the no appeal process.  If they thought that I would just accept this answer, then they thought wrong!  They are messing with the wrong !

.  This should get interesting.

Prayers Please.

Our appeal for the feeding and swallowing clinic in Philadelphia is in Raleigh for review. We ask that you pray that our appeal is granted and that we are approved for travel to our appointment on July 6th. Ethan needs this. Please pray.

Thank you.

Happy Father’s Day!

Today, we celebrate Father’s.  We celebrate all that they do for us, whether they are the Father of our children or our own Father’s.  We celebrate those who are Father’s even if not by blood.  We love you very much.

To Scott:

Happy Father’s Day, or should I say- Happy Daddy’s Day!  Ethan’s eyes always light up every time you enter the room!  That is how much you mean to him.  You are his world and I know that he couldn’t ask for a better Daddy to love him, play with him, and kiss his forehead whenever he may not feel well.  What a lucky boy to have you as his Daddy!  And, of course Shep loves you more than pig ears!  LOL!  What a lucky puppy, too! 

We love you!!! 

 

Now, to my Dad.  I want to wish you a very, very Happy Father’s Day!  I hope that you were able to do something special just for you today.  I wish that I was home to give you a special hug.  But, since I can’t, I am posting a few of my favorite pictures with you.  Two from my wedding- the first as you walk me down the aisle and the second as you give me away.  I am not sure if I have ever told you how much those moments meant to me.  Thank you.

And, this last one.  Obviously, I edited it to pencil just because the colors were old and I thought it looked cute.  This was before you went out to sea the first time.  We had all just woken up and Mommy wanted to get a picture of us all.  Of course, she wouldn’t take a picture because she was too busy crying her eyes out that you were leaving. 

We may not have the typical father-daughter relationship, but I love you just the same.  Yes, even when you drive me crazy up a wall!  I wouldn’t be the person that I am today without your love and guidance over the years.  For that, I thank you. 

Love, Your Daughter Kristen

I don't remember...

Breaking that mirror!!!

I went to ortho today regarding my leg(s). He was a very kind man who thought that I was from Canada because of my "accent". I had to laugh and tell him, "um, no". He then wanted to know where I was from. Once I said California, he said that he could tell. I have never ever heard that before! He loves the Bay Area and continued to talk to me about California and every once in a while would throw in, "I promise I will get back to work and talk about your leg". Too funny...

So, the original injury on my left leg is fairly common. But, he said that he couldn't remember the last time someone had it happen to BOTH legs! He said that I had a case of really bad luck. There is no other medicinal reason for me tearing my muscles. It is not even from being overweight. It is not from any previous medications taken for my RA. Yay me for bad luck. *insert sarcasm*

He told me to find a pool and swim as much as possible. Continue to take the epsom salt soak baths and to start some stretching and massage to loosen up- I swear he said hematoma. Is that right? Oh well...I have my orders. It is going to take close to 3 months or so to heal. The good news is that the muscle did not tear off the bone or anything, everything is where it should be, it is just torn and has to take it's time to heal. I have to be very careful to not push myself because the other leg is actually still healing and I don't want to hinder the healing process.

The bath I took the other night really helped. I am able to flex a tad more today than I have the past 11 days, so I will take this time to continue to read my sister's new book. More on that to come...

Literal Videos...HILARIOUS.

You HAVE to watch this! There are also 'related videos' after this one is done. I am headed to check out the A-HA one...

Loving the sound of...

Size 9 walking feet.

*That would be size 9 Toddlers, not adult*

Kamrin's Visit

I had planned on posting a really nice update after Kamrin's visit last week, but my computer has decided to go through some illness and it has been at Dr. Potts' office to recover, which has kept me from having access to add pics and all. I am borrowing my friend's laptop- THANK YOU Jimmie!!!- in order to post what I have.

Anywho, last Tuesday, I left my house at 5am to head to Charlotte to pick up Kamrin, Kyle, and Mr. & Mrs. Turner. Their flight was slightly delayed, but still got in about 7am. I was very fortunate to have my friend's nice big beast of a car (Nissan Armada) to pick them all up. It was especially useful because we ended up having to keep all of their luggage because the airline wouldn't let them check it in before noon.

We opted out of breakfast in Charlotte and headed back home. By the time we were close to home, the munchies kicked in and McCafe came to the rescue. Once we got home, we just chatted and relaxed. It was a very comfortable and just amazing and awesome visit.

It was great seeing Mr. & Mrs. Turner, too! I haven't seen them in well over 10 years! (For those who don't know, Mr. Turner was my high school English and Drama teacher...Kim's too.)

I had picked up some roast beef for sandwiches and made tortellini salad. It was just a very homey visit. Kamrin went with me to pick up Ethan from school and she was able to have some better time with Ethan. He was much happier than the last visit, and she was able to see him walking!

It came time to head back down to Charlotte. The time went by way too fast, of course. I think I said, "Do you have your passport?" a gazillion times.

I made sure to watch my little sister until I couldn't see her any longer. Yes, I was one of those crazy people at the airport repeatedly waving until we couldn't see each other any more. Then, she was off to Philadelphia for a quick stop before heading on to Ireland.

I have been able to talk to Kamrin twice since she has been in Europe and she is having a great time! She has seen most of Ireland, so far, including over 12 castles and even kissing the Blarney Stone (ew). Now, she should be in Scotland since her flight left first thing this morning. I am so happy for her and this experience that she is able to have. *Love you, Drew!*

One thing that I told them all when they were at my house: "I want you to go to Europe and then I want you to come back and say that the best part of your trip was your stopover in North Carolina!" : )

Doctor Update

I just realized that I actually never updated about the doctor appointment earlier this week. Ok, so I tore my calf muscle- I already knew that, but it is a much worse injury than the previous time (also something that I already knew). What I didn't expect was to be sent over to have an ultrasound done to make sure that I did not have a blood clot. Thankfully, I did not.

What wasn't good news was that my leg is still too tight/sore/swollen for being as far out from the injury happening, so I have to see an orthopedist next Wednesday. The doctor that I saw hinted that there was something else going on because my muscles shouldn't just be tearing like they are, but he told me that I would have to see what ortho says. After talking to my mom, she reminded me of when I tore the ligament in my ankle so bad when I was 6 simply walking up some stairs at school. Maybe I have just always had easily shreddible muscles??? Leave it to me, I guess.

Anywho, I feel very helpless and useless. Scott has been awesome. Today has been very difficult because Ethan is now out of school. He is mad at me for being injured and he is being a tad defiant. I think it's kind of smart of him, actually...I mean, it's not like I can run after him! Lil' stinker!!!

I have been able to get Ethan to walk to his chair for meals and I can lift him out of his chair, I just cannot carry him anywhere. It really, really, REALLY sucks. This is when it is horrible living away from family. I could really use my Mom right now.

I am also very shaky. I cannot describe it really. I thought it was the Vicodin that I took initially, but I have not taken that since day one of injury and I still have these shakes in my hands. Very weird. I think that I need to remind my body that I am only in my early 30's and should not be going through all of this junk!!!

"THE" video

*Disclaimer to the Grandma's: Get a tissue.*


Hall Walking

Be on the lookout...

I have the most AWESOME video to post! I just have to get it uploaded! Seriously, you will flip!

Ok, ok...

So, I called the doctor to make everyone feel better. And, yes- they want to CYA see me. Since it is the other leg, they want to make sure it's not something else. It was too late to go tonight, but I will go tomorrow. If they tell me what they did last time, I want my $25 copay back.

Russell has a forever family!

I think that I posted about Russell a long time ago...I think. Anywho, he is a little boy in Eastern Europe with Down syndrome who was available for adoption through Reece's Rainbow. He is the sweetest looking little boy and I prayed that someone would feel led to bring Russell home to be a member of their forever family! I just found out that a family in Pennsylvania is going to adopt Russell! YAY! Another child saved from a life of institution and imminent death!

Click on the button to go say hi to Russell's new family!


Grab This Button

Glimmer of hope

Our social worker from the hospital just called to let me know that she is appealing our case to the person who made the decision to deny Ethan treatment. It is at least comforting to know that we have someone on our side at the hospital fighting for us. We can just hope and pray that the appeal goes through!

Oops, I did it again...

Back in April, I wrote about a crap week. This one is not much better. I hurt my leg pretty bad on Saturday. Last time, it was the left leg and now it's the right. I'm all about equality, ya know...at least this time, I have a better story besides "I was just walking".

I had gone into the kitchen to make Ethan's milk and I closed the baby gate behind me. When I was ready for him, I went to pull Ethan up over the baby gate and as I leaned over to pick him up, my knee hit the baby gate and it went flying over as I was mid-pickup of the boy. In order to keep from falling and Ethan getting hurt, I landed funky on my right leg and it snapped...AND rolled. That's the only way I can describe it. Snap and roll.

Pretty much after that, I was screaming in pain and I even began to cry because it hurt so bad! At first, Ethan was startled by it all, but I put him on my lap to make sure he was ok and then he thought it was funny that Mommy was crying in pain. Niiiiiiiiice.

Scott was not home, but he was close...thank God! He has been awesome in wrapping my leg, getting me ice, bringing me meds and food, and taking care of Ethan. I would be in a lot of trouble right now if I were a single parent!

The last time this happened, I could at least walk on it the next day with a slight limp. That's not happening this time. I am still swollen down to my ankles and I cannot bear any weight on it. I can bear a little bit of weight in the very tip of my toes, but it is very short lived. I can't do anything! I had to have a friend come over to put Ethan in the car to take him to school! Come to think of it, how am I going to get him into the house today AFTER school??? Oh, heck.

So, to answer the obvious questions:

Am I going to the doctor? No. I already have the crutches and the boot. There isn't anything else that the doctor can do at this point. However, if I still can't walk on it by the end of the week, I will make an appointment.

Am I working out? HAHAHA...funny.

Ah, Calvin...you can always make me smile even when I am so ANGRY!

I got the call from our social worker yesterday telling me that our pre-approval request for the intensive feeding program at CHOP has been denied. They say that Ethan is already getting enough services here. It's a bunch of bulldookie. We would not have multiple doctors and therapists referring us up North if they could offer the services that he needs! ONE person made this decision and this ONE person states that there is NO appeal process. I'm sorry, but WTF? NO APPEAL PROCESS??!!?!?

This is not about me simply wanting Ethan to eat a french fry some day- this is about his safety. He just got over aspirate pneumonia, AND he has already had one item surgically removed from his throat...something that I do not care to repeat any time soon. Luckily, it was an item that did not obstruct his airway.

The budget cuts that are happening are devastating to the special needs community. CAP slots are getting cut/froze, as are Health-Choice spots. Mental Health units are being shut down. I would LOVE to be able to not have to need a CAP slot- I would love nothing more than to be able to care for my son like I always did a couple of years ago. I would LOVE to not deal with SSI. I would LOVE to be able to take him where I need to take him for the best possible medical care without being yanked around by insurance. I would love lots of things, I guess.

But, I am angry. I am angry that my son's safety will continue to be at risk, but in the meantime the auto makers are getting bailed out. I am angry that children are losing healthcare, but a certain senator can come into office and decide that the decor was not to her liking, so it got a new renovation/makeover- courtesy of the taxpayers, of course. Not cool. Not cool at all.

EEG/MRA results

EEG

Abnormal patterns, no seizure activity. Doctor is not concerned.

MRA

No sign of Moya Moya disease! YAY! Arteries look GOOD.


Pretty much what I had anticipated. We go in for follow-up to discuss on June 29th.

Not exactly how we planned it…

Ethan was scheduled for a sleep-deprived EEG first thing Friday morning at 7:30.  This meant that we had to keep him up late Thursday night and get him up early Friday morning.  I don’t know why I say “we”, Scott didn’t even flinch at 4am when I had to get up to go and wake up the Boogs.  After the EEG, Ethan was scheduled for a MRA.  Both the EEG and MRA were set to be sedated which meant no food or drink after midnight the night before.

EEG

We were called back on time, which was nice.  The tech proceeds to say that they don’t have orders to do a sedated EEG.  I show her my form that says that he is in fact scheduled for sedation.  Doesn’t matter, she says.  She also says that if he is going to be sedated for the MRA, she really can’t sedate because you can’t do a “double sedation”.  Alrighty then…we just roll with it. 

Ethan put up a fight, of course, while the tech put the 20+ probes on his head.  But, once the test could get started, I put him in my lap, crossed his arms, and he fell asleep.  The tech said that it was a perfect EEG in terms of him being awake and then falling asleep. 

MRA

Ethan was given a shot of pentobarbital orally to help him sleep before, which worked, but as soon as they tried to put him on his back for the scan, he flipped out and they had to do an IV shot of Versed to be sedated.  May I add that it took SEVEN adults to hold down my sleep-deprived pentobarb-sedated child in order to get the IV in!

I was told that the MRA scan was only going to take 10 minutes, so imagine my concern when I woke up from my own little nap 45 minutes later to still no Ethan.  Shortly after I woke up, a nurse came in to tell me that there was a little complication…

After the scan was done and the IV had been removed, as Ethan was being wheeled back to our room, he decided to let his tongue roll back to the back of his throat and obstruct his airway.  Suddenly, his O2 sats went from99 to 63 and his lips turned blue.  He was taken back and given oxygen, put on a pulse ox and all was gravy.  But, because of what happened, they wanted to observe him for a while which meant that we were getting admitted into Day Hospital.

 

So, our day did not go as we had planned.  We spent our Friday in the hospital while under observation.  His sats never once dropped again and he did not need any other oxygen than room air.  Boy, was he drunk though when he finally woke up around 8:30pm!  LOL! 

We were finally released around 9:30pm.  I got him home, gave him a bath to get the paste from the EEG out of his hair, and then I had him sleep with me that night.  It was funny watching Senor Drunkard stumble around the floor.  I started to say he was a cheap drunk but then I thought of how much Friday cost, and then I had to say, “Yeah, not so much”. 

We were very lucky to have my friend, Karen, working at the hospital that day, so we had some great laughs throughout his stay thanks to her and our nurse, Gina.  Other visitors included:  Ms. Mary, Amy (BFFK), and Kim (US from HEMOC floor).  The time went by fast thanks to all of our visitors.  Ethan is one loved little boy!

Another added bonus was that I was able to have my most favorite sandwich for lunch and dinner:  Einstein Bros. Tasty Turkey.  YUMMMM!!!

Should have results soon…