Monday, December 28, 2009
The kids had a pretty good Christmas overall, and even got a Wii shipped with lots of love and packing peanuts from Nana all the way from Hawaii!
They have had a blast (V can even play!) and it's been a nice distraction for them while I try to kick this nastiness settled into my chest.
We got lots of pictures, and as soon as I feel better I'll upload them for everyone to see.
cough.. cough.. gag!!!
Monday, December 21, 2009
Wednesday, December 16, 2009
Apparently my 16 hour a night sleeper of late can only have 4 hours of sleep the night before (yipee)!
He cannot eat for 8 hours before (in case he has to be sedated for the sleeping portion of the EEG).
And.... I must make sure his hair is clean and neat (shouldn't be a problem).
Sunday, December 13, 2009
My William has a career in technology knocking at his doorstep, I'm sure of it. He got through some pretty sophisticated stuff to contact me. I am so proud of him. Both of them!!!
Justin, my now 13 year old (he was 8 1/2 when we were last together) has been a bit more shy and reserved. Thay have been through alot and he has some serious trust issues to work through. They were basically brainwashed into thinking that I didn't want them back. That I had sent them away. Fortunately William was old enough to know that it wasn't true. He is 16 now, he was 12 then. He's working on helping his brother understand what has happened. It's going to be a long, slow journey I'm afraid, but it's all worth it if it means that I can finally have all my children together again.
I just thank God that we found each other. They are still up north right now. There is alot to be worked out, but I talk to them often and we'll be exchanging more pictures soon.
Believe me, I'll be showing them off too!
As for the V update, we did finally get his bloodwork done Friday night. We had to go down to APH and have the NICU team draw him. They were wonderful with him and in the end it took an hour and a half, but they got it. They found a couple of halfway decent sites to draw from, but the blood had to be coaxed out of his veins. I'm just glad it's done.
Now we have Endo on Monday, then Neuro on Wednesday. Next week on the 22nd is his Cardiology appointment. Hopefully one of them can give us some answers to explain his "episodes", plus he's taken to sleeping anywhere from 14 to 16 hours overnight. He's always been a great sleeper but that's kind of excessive even for him!
A huge part of me hopes that we're just overreacting, or that maybe he does just have a virus or something, but my logical thinker knows that a virus wouldn't be holding on this long.. we'll see.
Friday, December 11, 2009
Monday, December 7, 2009
V (Vincenz as he's called at home) with Ryan and sissy Alissa. Kalei was being a bugger and decided to stay at her Mom's the whole day... boooo :(
This is a pic of our oven baked bird. The biggest one with all the stuffing inside! The other two were smaller, but only because we had to fit them into the fryer outside. They were injected with cajun butter and fried in peanut oil. Ooohhhhh.. good.
That's Ryan smoochin for the camera.
That's me, V, and Ryan behind aunt Kelli and her macho man Caleb. He's 6 months old and weighs almost as much as V!
Ha! Ha! Daddy and V along with goofey cousin Colby :)
More V perched happily on Daddy's head!!
So there's just a few of our Thanksgiving day beauties. Sorry it took so long to get them up. I seem to get sidetracked so easily these days.
Friday, December 4, 2009
The thing is that he seems to be fine a large portion of the day, then right in the middle of whatever activity he's involved in, he has to lay down. We didn't really make too much of it at first but then we noticed that he seems to be doing it more often, and at inappropriate times. Right in the middle of playing he will simply stop, lay on the floor, and stay there for several minutes. Sometimes he will nap a little after, but mostly he gets back up and goes about his play when he's ready.
His GI doc noticed the behavior at Mondays visit and urged us to go to our pediatrician.
When we arrived in the office, to be honest I was kind of afraid we were making too much of it. I mean when he's up, he's fine.
The whole wait time in the office he wouldn't settle down. I started to feel like I was just wasting her time. I strapped him into the stroller and gave him a book which he busily started working through the pages of when I noticed he was very quiet.
I looked over and his head was down on his shoulder, his lips had gone very pale, and he was not moving AT ALL.
I reached over and brushed his cheek and he looked at me and smiled. Then he layed his head back down again. A few minutes later he was back up and running.
Dr. R went through all the "episodes" with me and the symptoms he has. She was initially worried about seizures, but he never goes limp or spaces out. He purposefully lays down and he will make eye contact. He doesn't go limp or spastic at all.
When I assured her of this she began leaning toward the possibiity of a cardiac arrhythmia. It would explain why he is so seemingly fine one minute, then down the next. Arrhythmias can cause a sudden feeling of weakness and dizziness. It would account for his need to lie down for several minutes at a time.
We had to put off the bloodwork until tomorrow, but she wrote for a bunch. She thinks that if it were related to a deficiency in his counts though, that he would feel like that all the time and he definitely doesn't. It's weird.
We have tons of experience dealing with heart failure and such but this is uncharted territory.
Dr.R is going to set him an appointment with a neurologist just to be safe, and cardiology to check on the possible arrhythmia.
I'm just wasted tonight. Every time things seem like they're smoothing out he gets hit with something new.
Has anyone dealt with this type of issue with their children?
Sunday, November 29, 2009
Everyone here is still feeling crummy, I can't wait till this passes. Every bone and joint hurts.. ugh.
Lil V is definitely NOT himself. Usually he's pretty spunky and constantly on the move lately, but this past week he's been anything but.
Several times a day I look for him only to find him laying flat out on the floor. Yesterday he was doing one of his favorite things, emtying out the bottom of the refrigerator. When I went to pull him away I found him laying on the floor surrounded by all his loot, nearly asleep. Definitely NOT like my little troublemaker.
As sson as I can take a deep breath without coughing up a lung I'll get our pictures on here. We did manage to have a really nice Thanksgiving and I can't wait to share!
Thursday, November 26, 2009
To be honest I was really nervous that today wouldn't go well. This side of our family is notorious for their "bar room brawling" type of mentality.
Tends to make for touchy family gatherings.
But today went way better than I had ever anticipated. There was one family member who showed up as dinner was finishing up and attempted to start an argument at the dinner table over the fact that there was no more pumpkin pie (seriously).
After a very short time he was asked to leave which he did... whew.
Other than that it was really pretty uneventful. Everyone worked together (woohoo) to make a nice holiday dinner for a house full, and I do mean full. There had to be thirty people there!
So, the sheriff's department got the night off, and we had a really nice dinner. The kids ran around being crazy and having fun and the adults got to spend time together for once in some peace.
You have NO idea how thankful I am for that!
p.s. I did get some cute pictures of our day, I'll post those when I get them off my camera.
Wednesday, November 25, 2009
Ryan's prednisone is finished (thank God), I love my kids on steroids!
He's still on the nebulizer treatments morning and night with albuterol and the flovent inhaler. He also gets claritin daily for some skin related allergies. The combination seems to be working so we'll keep it up. X ray's today were negative for any infection, but I did get that ominous "you need to see his doctor this week for the full report on his films". Love that.
We'll see her tomorrow morning so we can get that out of the way before the holiday just in case we need to change any of his meds.
Little V man is still fairly sputtery and doesn't have much of an appetite, but we have g toobie backup so i'm not overly worried about that. Usually he loves mealtime. Sometimes I think it's more about the social experience for him, but he likes his food too!
Seems like no matter how much he gets in though it's never enough. All he has to do is miss out on a couple of Pediasure feeds and his weight starts to plummet.. go figure?
Ah well. He's still on the breathing treatment too. Albuterol and pulmicort for now. We have the pulse/ox here so if need be we can use some supplemental O2, but he's still hanging at the lower end of normal. That in itself gives me more peace about him being sick. Usually, if it's the start of someting serious his sats drop way low even before the major symptoms hit and i'm not seeing that yet, so I think we're just dealing with a run of the mill case of the snots.
I do want to thank you all for the love and wish everyone a Happy Thanksgiving!!!
Now for my holiday wish...
Some of you may know that the bulk of our close family is Hawaiian, living in Kauai, so we unfortunately won't be with them for Thanksgiving.
The family we do have here is, how can I put this delicately, um, wildly dysfunctional.
Imagine a house full of loud, overly opinionated Italian rednecks...
I'm just hoping we can get through the holiday without any intervention from local law enforcement.
#1 because i'm tired of blazing lights coming down our drive, and..
#2 because I have no money to spend for bail. Seriously.
... wish us luck :)
Sunday, November 22, 2009
Saturday, November 21, 2009
Well it's happened. My ONE healthy kid is no more. A few months ago Ryan started with a nagging night time cough. Lately it's progressed to a full blown snotty pukefest nearly every night.
No sleep, irritable, ready to snap.. and that's just me. Ryan's worse.
So we gave in and headed to our friendly neighborhood pediatrician Dr R.
She sems to think that Ryan is becoming asthmatic, considering the symptoms combined with his exam and our oh so healthy (not) family history.
So we went home with a script for a chest xray, flovent, albuterol, and prednisone.
There's no school next week because of the holiday and my normally turbine driven, go flat out, has to constantly be moving six year old is now on steroids.
..... pray for me. please.
I does seem to have helped though. In the past 48 hours his respiratory symptoms have done a complete 180. He's slept for the last two nights (hallelujah) and had no major hacking during playtime, so I guess it's worth the craziness I'm very sure is coming.
Fortunately the prednisone is only for a week at this point. The flovent and albuterol are long term. No big deal in the grand scheme of things I suppose. Just one more reason to Love Love Love my girls at the pharmacy for being so on top of our needs.
I did have to turn down Dr R.'s very polite offer for a nebulizer and aerochamber.
We already have three... *sigh*
Whatever it takes :)
Wednesday, November 18, 2009
So this granulation business is really getting old. V's first attempt at a g tube was a multiple disaster so I really don't know how long the granulation tissue is supposed to hang around in a "normal" stoma.
... i just wrote "normal"....
A few weeks ago I finally burned off the last of it with some silver nitrate, and now it's back with a vengeance.
When you look at his stoma, the worst of it is on the left side. It's something like a big red sticky flesh donut.
We have the big guns steroid cream and that helps but I don't like to use it too much. Steroids can be tricky. Helpful in the right amounts, and hurtful if you use too much. Too much can actually cause the skin around the stoma to thin. Something we definitely don't want.
So silver nitrate has become by backup crutch. Fortunately if I wait till he's asleep and dab it gently he never even flinches, but the idea of gently dabbing something on my baby that comes out of a package with a skull and crossbones on it that says POISON in big red letters, just doesn't make me feel all warm and fuzzy about using it.
Then after a couple of days it comes back!!!
I'm still experimenting with the holistic approach. I've gotten alot of advice on essential oils and creams but i'm reaching the desperation point here.
Don't get me wrong, i'm more than excited to be on the "normal" side of things. I'll take this problem anyday over what we dealt with before, but big fleshy skin donuts be damned!!!
... ok I feel better now :)
Tuesday, November 17, 2009
... now i think maybe an expectorant to fight off the ick ...
I thought long and hard about the nettie pot suggestion, It's a good idea really, it's just that i don't think i'm that brave.
I worked in a hospital for four years, i've treated bed sores, parasites, major ick of every shape and size. But the one thing that can bring me to the verge of spewage quicker than anything???
Mucous. Yours, mine, anyone's within earshot of the gurgle.
I know i'm weak :)
(thank God V's never needed a trach)
Friday, November 13, 2009
Sunday, November 8, 2009
Friday, November 6, 2009
Sunday, November 1, 2009
Saturday, October 31, 2009
Lately in addition to his numbness and pain, he's been having bouts of breathlessness and becoming very overheated. Tonight he made an impromptu trip to WalMart for some nighttime goodies around 9pm. At 10:30pm I was getting pretty worried, and by 11:15pm when he pulled in the driveway I was darn near frantic.
Turns out he got way overheated and lost his breath so he sat down on a bench and proceeded to PASS OUT!!!
The manager and assistant manager wanted to call him an ambulance but my hard headed man rested a bit and chose to get his goodies and drive himself home!
Keep in mind we live in the middle of NOWHERE.. so if he hadn't of made it home we would be literally up a creek....
Well, outside of knocking him out myself and driving him to the ER, I'm hoping we get a good night's sleep and all is better tomorrow.
I love not having insurance....
Barring any major disaster, stay tuned for super cute halloween photos to come (picture me crossing my fingers).
Tuesday, October 27, 2009
I can't believe how many people I have come back in contact with in the last few days...
Well, one thing that I found out today I wanted to share. When V was in Arnold Palmer Hospital during the summer they were filming a movie in the main lobby. Our wound care nurse explained that it was a movie about a child fighting cancer, a brain tumor. We sat and watched for a time and went on our way..
I never knew anything more about it until today. A friend posted a link to the movies website. It's finally finished production and is scheduled for release in early 2010. It was filmed at several locations including APH and Give Kids The World complex that houses children and their families during Make-A-Wish trips.
And unfortunately, it's based on a true story. The story of the filmmakers child Tyler. It is called "Letters To God".
PLEASE, PLEASE go check it out.. and spread the word!
Saturday, October 24, 2009
Anyway, it's back. So guess what I have for you tonight ???
Pics of my little wild man Ryan, not so wild and feeling kind of rotten.
This was from earlier this week in the aftermath of the blue Cheeto craze!
Monday, October 19, 2009
How the heck you can lose a camera in a 26 ft trailer I just do not know. There's barely enough room in this thing to breathe let alone lose anything! But I guess if it can be done...
... it would happen to me :)
Hopefully our treasure hunt will produce something. I've always complained that it took crappy pictures, but at least I could take some. That'll teach me to complain, right?
When I do find it I'll have to show you all a picture of our latest find... color changing Cheetos.
They turn your mouth blue when you eat them! After a few my munchkin looks like he's pulled a dracula on a fountain pen!
AAhh, that's going to be my challenge to a certain stumpy little cutie we like to call Miss Pudge (Yes I mean you LC).
Tell your Mama to go to the store and buy you and Daddy some color changing Cheetos.
I bet that'll be some photo shoot.
Wednesday, October 14, 2009
There was blood EVERYWHERE. It took quite a while to get him calmed down and cleaned up.
A futile measure really. Every time I looked over at him for about the next three hours his mouth was oozing blood.. ugh.
It's tough to deal with a cut in the tongue. Holding pressure sure is hard, and keeping little fingers out afterward is down right impossible.
Daddy finally figured out a way to pucker him up and get the bleeding to stop. He sprayed his tongue with sour spray candy. Even I was impressed.
He's alot better today, although his tongue still looks pretty gross when he sticks it out. But at least it isn't bothering him much anymore.
Lacey from Jaxson's Fight tagged me the other day to tell how my kids got their names so here you go :
My oldest William Lee, is now 16. When we first found out I was pregnant we never really talked much about girl names. I don't know why, but we had settled very quickly on the name Justin. When my ultrasound confirmed a boy, we were very excited. That evening we decided to tell my ex-husband's family about our "boy" when his Mom called to tell us that his grandfather had been taken to the hospital after suffering a stroke at home. They weren't sure he was going to make it. We rushed to the ER just in time to say goodbye. We never even got to tell him our news. His grandparents had raised him, and his loss hit him hard. That evening he asked me if we could name the baby after his grandpa "Bill", William.
As far as the Lee, that was for my ex-husband's middle name.
Our next son was obviously going to be our Justin. He's now 13.
His middle name is also Lee. My Mom used to joke that we just weren't all that creative, but really it's because my Dad's middle name is Lee too.
Now on to my younger set...
Ryan Thomas was my third boy, he's now 5 (almost 6) and Daddy came up with his first name. It was from one of his favorite radio DJ's children. His son's were named Ryan and Gage.
Thomas was my idea, I had always loved the name Thomas. Don't really know from where. Maybe all the Magnum PI episodes my older brothers made me watch as a kid.. "Thomas Magnum". That's the only Thomas I ever really knew of. Good looking, charismatic, what wasn't to like? Ryan Thomas just seemed to flow.
Now Vincentio, that's a whole other story. We could NOT think of a name for this kid. We couldn't agree on anything. Daddy is half Hawaiian and half Italian so we started looking through name books. His oldest daughter had been given a Hawaiian name, Kalei (pronounced kah-lay) so we thought that the youngest should have an ethnic name as well. We looked through half a dozen Hawaiian name books and just couldn't find anything we could agree on and the male Hawaiian names in his family are VERY hard to pronounce so we didn't want to go there.
We started looking at Italian names on the internet when I went into premature labor. Two days after he was born we were still looking (ha). With all the hubbub going on with his DS and heart diagnosis, my older boys took on the task of looking for a name.
On the third day after he was born, my boys called me at the hospital and announced that they had found the name Vincentio on an Italian name website.
It is a derivative of Vincent, the conqueror. It sounded exactly like the strong name our little munchkin needed. As for his middle name Albert, that is for Daddy's grandfather who raised him and my paternal grandfather who died when I was young. The only one of my grandparents I was ever really close to.
Tuesday, October 13, 2009
Early this morning, at 3:50am Jessica Easley took her final, painful breath on this earth.
She did get her final wish, to go to Heaven at 11 years old! Yes, she departed this life on the very day, 11 years ago, that she entered it.
She is free now. Running and playing with 2 legs, 2 healthy lungs.
The only consolation in this terrible thing is that along with her earthly body, so died the beast.
It has lost. It causes her no more fear, no more pain. It can't take any more.
Oh how I wish there were something besides death that could have conquered this.
Thank you all so much for your kind words and for putting up with my ranting of late.
It's difficult in these situations not to climb up high and scream it from the rooftops!
The saddest part is that it is not over. So many more of our friends will meet the same fate I'm afraid. And when they do, there will be no doubt in anyone's mind of how it makes me feel.
Thank you all again.
Just to pass along the information, Jessica will have visitation on October 15,2009.. burial will take place on the 16th.
Her procession will consist of one final motorcycle ride through town before she is laid to rest that afternoon. I can only imagine the huge smile she'll have from up above. She did specifically request that all in attendance wear bright, cheerful colors. No black unless you're wearing biker leather!
For the rest of her "celebration of life" plans please see her caringbridge site.
You all are the best.
P.S. I'll post later tonight with some more from the little skitterbug! He's had a busy day.
Monday, October 12, 2009
I don't want anyone to think that I have any contempt for "pink" ribbons. Breast cancer is a killer. It deserves awareness and funding. It deserves every bit of the attention it gets.
The Susan G Komen foundation has made incredible strides in their fight for women's health.
It's just incredibly maddening that our children, OUR CHILDREN.. cannot get the same.
People don't understand how insidious cancer in children can be. How such a monster of destruction can grow inside of such an innocent being. It spares no one.
Most childhood cancers are very unlike cancer in adults. It cannot be treated with the same drugs used in adults in most cases, and when a child with cancer relapses the survival rate can drop from 90% (for common forms of ALL) to a mere 10%. When it comes back, it comes back with a vengeance. A child in remision is not considered "cured" for years, so the possibility of relapse is astronomical.
There are some forms of childhood cancer that start out with survival rates of only 5%, those tend to be the "rare" cancers, like ATRT (brain tumor). So rare, and we've already lost more friends to that particular "rarity" this year than I can count on both hands. It's unbelievable.
Then there are cancers like Jessica's ARMS (soft tissue cancer). She has fought this beast for over 3 years, been in remission twice, and with every relapse the cancer seems to "outsmart" the drugs. This is unfortunately very common in many forms of childhood cancer. The beast learns to adapt and change so it lives despite the toxic chemicals that are designed to kill it. Even one cell remaining after treatment can grow an army of new, "smarter" killers.
This is why we need more funding, new drugs. In Jessica's case, she has tried all the chemo drugs. None of them work anymore, and there is nothing left to fight with. No new drug that she hasn't tried yet to kill this beast. There's nothing.
What are you supposed to do when the doctor says there's nothing left they can try???
You take your child home.
You do your best to help control their pain and fear as the beast takes over their body, robbing them of the most basic of functions.
You spend time trying to explain Heaven to your child and hope they are not afraid.
You try to make enough memories to last the rest of YOUR life without them, like that's even possible.
You help your baby to die with some sense of dignity and peace, as the beast tries it's hardest to rob them of it.
What the hell??? Ok, maybe not much calmer.
I want to see as many gold ribbons as pink. Our children deserve it.
Spread the word.
She's 10 yars old, and she can't move. Since Saturday she can no longer move AT ALL. She can barely breathe, she can't open her eyes or speak. She can't even squeeze her Mom's hand anymore.
She can cry. When she is touched or moved for any reason, she can cry from the pain.
When her family tells her that it's OK to let go, to be with Jesus, she can cry.
Where is God's plan in all of this? Don't get me wrong, I am still a believer, but it's just so hard to understand how this is possible.
Where is God's mercy?
There are pink ribbons everywhere for breast cancer, as there should be, it's a horrible disease.
Where are the gold ribbons for our children ???
.. 46 children are diagnosed with cancer EVERY DAY.
.. it is the #1 killer of children, more than cystic fibrosis, AIDS, and genetic anomalies combined.
..EVERY NIGHT, 7 children fighting this beast will not live to see the next day.
..it has been 20 YEARS!!! since a new drug was approved to fight childhood cancer.
Why don't more people seem to care ???
Where is their hope for a cure ???
Sunday, October 11, 2009
Her Mom, Teresa, feels strongly that besides the love she has for her family, that the one thing keeping Jessica here is the fact that she desperately wants to see her 11th birthday.
That day is still three days away.. it might as well be a million....
Teresa cannot stand to see Jessica suffer any longer. In her weakened state, Jessica is a bit confused when she is awake. With the huge amount of pain meds she is on, it's amazing that she can be awake at all.
Yesterday Teresa decided that Jessica's birthday can't wait any longer. Her baby deserves to be free.
So they decided that yesterday, Saturday 10/10/2009 would be Jessica's "birthday".
They knew that she would never be able to eat a birthday cake. She can no longer swallow due to the tumors in her neck. But how could she not have one?
So they asked her what kind she wanted, carrot or chocolate. With a huge smile, Jessica ordered the chocolate birthday cake.
"Chocolate".. is the last word she spoke.
Since then she has been relatively comatose. She does sigh and make sound now and then, but her pain seems controlled so she sleeps peacefully for now.
The whole family is beyond in shock that this may be the end. Jessica has fought so hard for so many years, no one can believe it's really about to be over. The fight for her life has really ended. Now the fight is for her to gain a beautiful set of wings. To fly free.
I will post more when I know. For now please pray for this child to have a peaceful journey.
Saturday, October 10, 2009
This one if for sweet Jessica Easley. I have posted about Jessica several times over the past month. Last time, a couple of weeks ago, they didn't think she would be with us much longer.
But true to fashion, Jessica still fights. Fighting to live, fighting for her angel wings.
Mom says her favorite saying is "i'm a rule maker, and a rule breaker". She's one tough 10 year old.
These past few days have been very hard. Jessica has been totally bedridden and unable to move her body for weeks now, but in the past few days the beast has grown drastically. The tumors in her chest and neck have begun to expand rapidly and spread upward into her face.
She has developed immense swelling in her face and throat. Although she is now on oxygen continuously, breathing is a fulltime struggle. Her fear of suffocation continues to be a constant.
She has been sleeping much of the time, when she is awake and lucid she is still giving Mom instructions about how she wants her celebration of life to be carried out. She is hoping to make it another few days to her 11th birthday. She says her one true wish, other than to die in her sleep, is to go to Heaven at 11 years old, not 10.
How on earth can there not be anything left to fight with for these precious babies?
How can we possibly be forced to stand by and do nothing but watch as the beast overtakes this child and devours her?
Where's the sense in the fact that it's been 20 YEARS since a new drug was approved to fight childhood cancer?
When we all tuck our children into bed tonight and give thanks to the Almighty for their health and safety, please remember that Jessica is fighting still..
..and that there are seven other children fighting the beast somewhere tonight that won't live to see the sunrise. And as those children end their fight on this earth, tomorrow, 46 more children will just be beginning the fight.
Spread the word.
Thursday, October 8, 2009
So my naughty little skitterbug is now 4 years old. Holy crap.
Last year after his 3rd birthday he officially "transitioned" from the Early Steps birth to three program to "schoolage"... scary.
We did alot of research into looking for the best fit for him in a pre k program. The local mainstream elementary school was our first option. Considering V's collection of special medical issues, along with the need for tube feeding, he needed to be placed into a "special needs" classroom. No shocker there.
The teacher was a lovely older woman who was immediately taken with my boy. She did comment on the fact that the special needs class was for kids from 3 to 5 years old, and they had never handled a child of his tiny size or with his extensive medical issues. At that point he still was not even walking yet. She admitted that he would require quite a bit of extra attention not only for teaching but to keep him safe in a classroom of typically sized children. He was not mobile to where he could participate in most class activities or even on the playground. He still didn't even have meaningful speech. She did say that she would be willing herself to make whatever accomodations were neccesary for him, but she would not be teaching the class after the start of the next year. She was retiring. The new teacher was younger than she, and new to the special education teaching position.
One option OUT.
The next and final option was our local "Easter Seals" school. I was excited about the possibilities there because my older brother, who was born with cerebral palsy had attended the ES pre school program when he was a child. He made amazing strides there.
When we first toured the facility we were very impressed with the staff. They were friendly and accomodating. They thought V would do very well in their program.
The only problem was that their 3 year old class was comprized of a group of walking, talking toddlers who dwarfed my tiny munchkin in size and ability. The head of placement thought he would fare better in the 2 year old class. It was understandable, but the 2 year old class was not a pre k class. It was more of a daycare with a therapeutic edge. Not bad, but not what we were hoping for.
You see, cognitively, V was far ahead of his physical ability. We didn't want his mind stunted by being placed in a room where he would do nothing but sit and play on a rug for 3 1/2 hours a day. He could do that at home for free.
Still, everyone felt he needed to make the move from home based intervention to a school setting so we went for it and hoped for the best. It took weeks of testing and paperwork, doctors orders and medical approvals, but we did it. And so began his first year of pre k.
The first week was rough. His room was cold, a problem with the air system, so we were asked to dress him warmly. Still, every time I picked him up he was a teeny tiny popsicle.
The second week he began to get low grade fevers and was sent home on two occasions.
By the third week they were asking us to keep him home if he even sniffled because of his medical history, and by the fourth week the school nurse called me at home and stated that perhaps he was not ready physically (immunity wise) to be in a group setting.
So ended our pre k experience. The head of the school gave me the necessary paperwork to apply for home schooling based on medical need, but before I could submit them to the school board for approval, the whole G tube nightmare began.
In and out of the hospital, infections and fevers galore. Definitely not acceptable for school visits, even at home.
Since then he's had to miss an extensive amount of therapy as well since he just wasn't able to participate in a care setting, and home visits, given our housing situation, are not optimal.. or popular with the local therapy providers.
Finally, over the past month he has begun to blossom once again, and I am attempting to find available therapy to get him restarted. He should be receiving 60 minutes per week of PT/OT and speech. Hopefully that will be up and running soon.
Now I am left with the pre k issue.
I'm not super excited about returning to the Easter Seals school again. I really don't know that his immune system is any more ready than it was last year, and with the flu craze.. don't really wanna go there. But this year and next he will still need pre k services before he can start kindergarten.
He is definitely mobile now, he started walking earlier this year. Not yet very steady, but he's getting there slowly. He still does not have meaningful speech for communication. He does sign some, but most of his interaction is because WE understand what his sounds and signs mean.
What would/did you choose for your child???
Tuesday, October 6, 2009
Many of our blogging friends are participating in the 31 for 21 this month to expose the beauty and wonder of our loved one's with Ds.
I would be participating myself if I weren't so busy chasing after my loved one with Ds.
Yep, the V man has been running us all ragged since he's healed up so nicely from his last surgery. He's into everything. Destruction on wheels.
I couldn't be happier honestly. As tired as it makes me, I still remember those days when Ms. Sue (our PT) couldn't even get him to bear weight on his legs without a shrieking chorus of displeasure.
Now, I have to resort to the "baby jail" on occasion just to brush my teeth without a major disaster.. ha!
Even his every six hour med doses are only short pit stops and a quick raise of his shirt to "shoot the button" as Daddy calls it. It's sooo nice with this new site, it works right and since there's no pain involved, he readily allows me access without any meltdowns.
Well, that's the breakdown, the runchkin is kickin my butt.
Just spending my days trying to keep up.. and enjoying the healthy while we have it.
Saturday, October 3, 2009
Our friend Jessica Easley, the 10 year old girl I wrote about before is nearing the end of her journey.
Jessica has been fighting alveolar rhabdomyosarcoma for the past 3 years. When she was 7, she lost her leg to the beast. After a brief remission she relapsed in her lungs. She fought unbelievably hard and achieved a second remission soon after.
Then only last month she confided in her Mom that she believed her cancer had returned.
Her heart hurt her, all the time. Mom tried hard to think she was wrong. Nothing else to go on.
Until.. a few weeks ago Jessica came down with a "cold" that caused fluid in her lungs.
A trip to the ER revealed that the beast has returned, with a vengeance. This time it was in her spine and her thoracic cavity wrapped around her aeorta.. near her heart.
Within days she was deemed "terminal" and was allowed to go home on hospice. Even for her young age, she's fought the beast so hard that she's exhausted her lifetime allowance of chemo and radiation. How does something like that happen to a 10 year old? For the last couple of weeks Jessica has been confined to a hospital bed in her living room and unable to move due to the intense pain the tumors are causing as they destroy her from within. Her spirits have remained high throughout this horrible time. A testament to the fight within her.
Her Mom says she has been diligently working on her "celebration of life" that is to come. She's been trying to strengthen her family so that they will be able to go on without her as she tries to prepare herself for Heaven. How does a kid do that?
Today, Jessica has taken a turn, her breathing is difficult. The beast has distorted her chest and is crowding her heart and lungs. One particularly nasty tumor invading her neck is impeding on her airway. She is terrified that she will suffocate.
They don't believe she has much time left with us and they are praying that Jessica gets her most important wish. To die peacefully in her sleep, without pain. A wish that up until now she's been denied.
She's only 10 years old. It's not fair.
Monday, September 28, 2009
F L U.
All four kiddos. High fevers, nausea, dry heaves, diarrhea.
Oh the good times we've had.
Pediatrician says she thinks it was swine flu, but whatever it was, I'm glad it's almost gone.
On to the good...
We saw pulmonology and the surgeon today.
Pulmonology, Dr. B said that for all of V's yuckiness of the past week his lungs sound alright.
We are to continue with his daily Pulmicort nebs to fend off any reactive airway issues, and he refilled all of our regular meds. He even hooked us up with a new nebulizer and aerochamber.. woohoo.
The surgeon, Dr.P says the granulation tissue is just being stubborn... really???
He gave us a new script for some amped up steroid cream and a new regimen to knock out the gooey, oozey, puffiness.
He even said the since V's tube has already been out once, well, twice now, that we can go ahead and switch it to a button and get rid of this long tube! Yay!
He thinks the long gtube wiggling around is contributing to the build up of the granulation tissue. His PA faxed the order to home health at 4pm today and by 7pm we had the button guy knocking at our door!!!
Tonight when he's settled we'll do the switchroo and I'll try to get some pics of his new minimalist belly hardware.
Thursday, September 24, 2009
Except for the elongated stay in the hospital, and the TWO.. yes, two times that it's been PULLED OUT ALREADY!!
Thank goodness this stoma seems pretty resilient, but we do seem to have one very prominent issue. One that we just can't seem to get under control.
... granulation tissue. ick.
It's been a couple of years since our last G tube adventure and he did have quite a bit of granulation tissue with that go-around but eventually we got it under control.
Now if I could just remember how we did it.
His tissue is pretty bad right now, something like an enormous flesh donut. Mmm.. good stuff.
For a week now we've been religious with the steroid cream. I don't want to over do it though because too much steroid cream can actually thin the skin.
Our other course of action has been silver nitrate. We've done that three times now and still nothing.
I'm beginning to think this stuff feeds off my frustration. It's just getting bigger.
Has anyone out there found the magic cure by any chance???
Wednesday, September 23, 2009
First of all, if that darned toobie comes out again i'm gonna find me some super glue before I put it back in again.
Last night V, otherwise know now as Cheeto (thanks Courtney), was awake with Daddy somewhere around 1am when they decided to do some rearranging in the bedroom.
Don't ask, I have no clue.
Anyway, I was woken up from Daddy yelling a choice expletive.. or three.
Then those words. "It's out again!"
Yes, it's out again. Balloon inflated, everything intact, laying on the bedsheets.
Nice, shiny new stoma.. with nothin' in it!
oh. my. God.
So it's back in. Again. Balloon is a teeny tiny bit bigger this time.
What is it with my kid and that naughty toobie? What I ask you???
Sunday, September 20, 2009
I managed to at least get some pics WITHOUT any friendly hand gestures..
It was the best I could do. He's crafty with that magazine.
The old tube, the one that was, um, prematurely dislodged.. was nearly the same. It was yellow with no little silicone disk because it was sutured in. Oh well.
I don't even want to imagine the fun conversation i'm going to have with his surgeon tomorrow.
He turned the big 3 - 2 on Friday the 18th!!!
Happy Birthday Daddy!!!!!!
We had a great day, all the kids together, and a big FAT homemade cheesecake covered in delectable cherries for the birthday boy.. um, man.
Of course I have no pictures.
Not just because my camera stinks and every picture I take comes out looking like some really bad mugshot, but because, frankly, Daddy doesn't enjoy having his picture taken.
In fact, if I were to get a surprise shot of him, it usually includes some obscene hand gesture compelling me NOT to upload it for the viewing pleasure of the general public.
Love you babe.
Saturday, September 19, 2009
Yup, that would be my munchkin.
So we cleaned up the blood gushing EVERYWHERE, found a spare Mic G tube from our last ever -so- fun gastrostomy adventure, and popped that sucker in the quickly shrinking stoma.
Have you ever heard the saying "if it wasn't for bad luck, we'd have no luck at all"...
... that's us.
After a record setting trip in and out of APH's ER (they had a mad influx of possible swine flu cases in the ER today).. the surgeon looked him over and was able to aspirate stomach contents. He reassured me that we'd done exactly what they would have done for him and politely hurried us out the door.
In his words, "you don't want to leave here with anything you didn't come in with".
i.e. swine flu.
We're home now.
V is happy as ever.
And Mommy is relatively freaked out.
Friday, September 18, 2009
I'm sure by now you all know sweet Jaxson and his Mom Lacey.
Jax has been having worsening issues with his heart and veins causing some majorly troubling symptoms. His doc's seem to have been dragging their feet a bit when it comes to taking care of this amazing little guy. He's already suffered a traumatic brain injury because, well, he simply did not receive the care he deserved when he was sick the last time.
Jax needs this next surgey to go smoothly, so does his family. They are so worried that Jax won't make it until his surgery next Friday.
Please, please send some love and prayers their way. www.jaxsonsfight.blogspot.com.
Pray for Jax to stay stable until next week, for his doctors and surgeons hands to guided by grace, and for some much needed peace of mind for his Momma.
Thursday, September 17, 2009
Annette's parents were preparing to take her home with the help of hospice.
It's barely been a month out of the hospital.
A month of making memories, taking pictures, snuggling without wires and tubes.
Barely one month out of her WHOLE LIFE... just to be a little girl.
Tonight at 9:47pm Nettie went home to be with Jesus. Home to her big sister Maddie, who also died of rhabdoid cancer four years ago.
Don't know what else to say. Except that her parents have suffered more than any Mommy and Daddy ever should.
Go give some love.