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I am floored with bitterness, sadness, and confusion by this topic.

 

The learned behavior of what a father "is," is still very cold and withdrawn. I am still quite the lost little puppy on this topic. Would I like to explore it further? Hell to-the-no. I am completely satisfied with reality and not dancing with insomnia over it. I prefer the sandman and my happy little world as is. Save as...!

 

Oh... and happy father's day!:)

 
 
 
 
 
 
Soooooooooooo, this morning Eli woke up Mr. Grumps again, which isn't unusual.
He was peeved he had to do more speech therapy. But guess what? Rusty brought gum. :] This guy's amazingly awesome because they flew straight through it and I just checked his results and he got 100% on everything! So proud of this kid. He really likes Rusty, he says :) 

Then we went to meet Dr. Wu, who's another lung specialist. This guy was AMAZEBALLS! Seriously!! He asked me what do I know about the disease, he read all his records calmly and notated all the questions he was asking me. He asked who primary was, who rheum was, what meds, how often. He asked why we're upping Methotrexate. He asked if she gave me his Prednisone weening schedule. He asked me if she had given me any information. He GAVE me information. He told me the disease causes inflammation of the lungs AND heart and that is why we need to be going there about every three months. *Call in two months [october] to make an appointment in November!* He was exceptionally connected with Eli off the bat. Not out of concern either, but he made Eli feel pretty normal. He explained to me to watch out for his breathing and call immediately if he experiences faster breathing or his holding his breath continues to progress.

Wow, a doctor that does his job! Super impressive. And he's a forty niner's fan :) 

Eli's heart rate was still in the 90's and 100's. He gained 5 lbs, but not for the last week or so. The last two monday's have said 30kg's but his actual weight for today has said 67lbs so I'm thinking he gained that weight immediately from the steroid and treatment off the bat.

Or he just loves mama's cookin' lol. He is eating up a storm!!

Time to sing some stayin' alive.
 
 
 
 
 
 
Slept like crap. Slept with Isaacy and Jonah at first to make sure they don't go into daddy's quarantined room since he's got a head cold, and I do NOT want to see these germs spread. Then I switched to Eli who woke up in the middle of the night.

Had an early morning rude wake up call to my sick husband dumping out baskets of clothes for a pair of socks. Whatever. I just sat and waited for his tantrum to be over so I can go back to the regularly scheduled programs of sanitizing the crap out of his room.

Thought it was going to be another day like yesterday, but speech therapist came with a very contagious and bright smile. :) Kinda reminds me of Mr. Rogers (and I LOVE Mr. Rogers, don't make fun!!) Anyway, he set a beautiful tone and Eli had not one tear fall during his whole session. he's even practicing his words. I received his results and they're all passing 'cept for a few. :) Same stuff as yesterday so I got to explain to him that the only thing that changed was his attitude. :] He couldn't hide the smile :] :].

As a matter of fact, I got some great pics of him hugging and loving on Jonah. I just love my guys. So I have to go to the DMV today and tomorrow is the lung specialist and last day of speech therapy for the week.  So long as he doesn't get sick, we're solid. Take all my sleep away, but it's really Eli's mood that influences the tone of the household.

I'm learning how to use my phone organizer, and i'll be jotting the questions in there.

My mother and middle sister brought up an idea that I'm not trying to touch, but I'm all for it if it gets us to LACH.. and that's a donation acct. I don't want to rely to heavily on it, actually, but whatever works. And if people do want to help out, that's a great option. So I left it up to my other older sister. She seems the most capable for this project if she decides to follow through with it.

I'm on a mission to find this dang glue gun today so we can decorate and all that fun stuff :] Keep his spirits happy. :] I have to go to the store for some soup to keep the old man happy, but maybe i'll look for a glue gun there if I don't find mom's old one.

Anyway. Busy day, I'll be back!! I'm sure of this. :]

Bloody nose since yesterday. Keeping an eye on it.

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18:10

Running Down the Drain.

Been running on empty all day. A lot is seeping in the wrinkles of my brain and settling in. A process of thinking about forever.

Today we painted two bird houses and a platform. I'm thinking of creative ideas for how to make a bird bowl in the center. We also decorated a few picture frames together. We did these things and it took us about three hours and two burns for Eli before we finished..

We then proceeded to make dinner together, and i'm teaching him how to use sharp knives.... which are rather difficult when cutting potatoes.... so we moved on to zucchini. We made a roast with veggies, and beef stew (for dad since he's sick).
Now we're watching zack and cody. :) Got a few more great pics today too.
\
I was told to get him a life specialist. I also need to order this book, myositis and you. I checked the libary's website, but it said they don't have it. I'm tempted to purchase.

I'm going to call tomorrow to get the CPK levels of the bloodwork and possibly have it faxed over to me. I will repeat this notion until I do it because that's how it'll go into my long-term memory.

My head's made the decision to discontinue school this fall. Another crack in the heart of my life. So few things make me feel the environment I've found myself. This be one of them. I realized I've touched on this topic before.. I guess my heart is just waiting for everything to go back to normal. I know it won't, but... I don't think it's helpful to believe otherwise at this point.

I feel so very, very scared when I try and understand what's going on. I stay up late at night and think of everything I might have missed or haven't covered, and there are tons of things. I forgot to call the nurses help line and tell her,I need to get the school thing together in five weeks, which I'm waiting for the school to open since I know all about inclusion and that can take a while... that or homeschool which would be protested by Eli AND JR. ... I did talk to Bobby today though, and she explained to me this procedure is normal.. And to expect more hospital trips and IVIg's in the future. Expect this... I suppose I would "expect this," if I had a clean grasp on it. Speaking with another parent yesterday made me feel less alone, but still... I have to make these decisions for my son with my own understanding.. I've never been good at decisions... that's why I'm still in school and life has taken me by the balls and ran with me. I feel like I flounder in between dimensions that were supposed to be and those that never were.

I'm waiting for make a wish foundation to get back to me. always something. More than ever, always something now.

And two other kids I can't forget in the running. lol.. they'll never let me forget them. :]  Not Jonah and his high shrill, nor Isaac and his funny weirdo ways. I am truly blessed. Some mornings I wake up wondering how the heck I got here, and my three sons laying next to me remind me how beautiful life is. I thank God every day for them since the day they were born.

Sometimes, it's hard not to focus on regret and to focus on God's strength. My own won't suffice. Moving forward and not focusing on the emotion of things are my saving grace. I just wish people respected that.

Talking to JR now, I've decided to get him down for a second opinion at LACH or San Fran within the next three months or so. Planning it so that Eli would be with me and JR would be here with the boys. That way, it'd be easier to afford and close to guaranteed.

I need rest. Tomorrow, library and freaking DMV! Oh and call my rental agency again about this stupid leak. Oh and the 11th, my work out classes start! This will be good. If I get to go.



 
 
 
 
 
 
Waiting for Speech therapist to come.  Tick tick tick. Waiting for Eli to freak out.

I have to call Centurion Management for a plumber who will be sprayed by lysol a soon as he steps foot in this door. Also, to give me a key that actually opens my front door seeing as how we've been here for over a year now. :/

I have to fill out JR's application seeing as how he decided to put it off until now, and per usual, this ends becoming one of my duties.

I have to go back to the DMV, because my mother and my husband couldn't get the social security right when I was at the DMV the first time with JR. Unfortunately, my case worker called at that exact moment my mother called and I had to give JR the phone. Apparently, two heads are not better than one.

Maybe Mr. Wrong, not so much? Heh.

Eli's a complete grumpy pants [like mother like son] this morning too. I just hope he's freaking willing to work with Rus. [therapist]. yay.

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Ugh, some things I need to mention --

Eli's behavior was absolutely terrible. He was angry and has every right to be. He yelled at me that he hates his life and this disease has ruined everything. Not even I can understand fully what he's going through. I just know I cannot fix it and that's the most pain I've ever felt in my life. (And I'm pretty certain I've experienced my fair share). The fact that my son is in pain and I can't fix it leaves him even angry at me. :[
Took pics of his rash and pretty much tried to not even bother him today. He wanted to play board games, but immediately started crying soon after he had the notion that I might win. I believe this is due to lack of sleep (thanks JR for the late night session of video games) and the drugs he's currently on.
Also took pics of the boys in their sweet shawls. Eli is angry at the IVIg bear. He says he wants to just poke it with needles. I think he's too old for it or too angry right now. Time will certainly tell.

Holy crap. So much to weigh. Flu shot/h1n1 or not to?
Home school or not to?

Birthday?!!! :/

Bright side - I have a JMDS friend. :] Her son has it as well. Instant bond. <3
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21:00

I have to have to have to have to call the clinic tomorrow about this tapering. Other JMDS moms say be weary!!! I'm as weary as it gets. :[ No set backs :[ :[


Oh, and I have to give up school.... for this fall semester. I'm seriously crying about this. Like, anxiety and all. The truth is out there and it's getting closer and closer each day. I've been thinking my whole life experiences led up to me being strong enough for this one moment, but maybe i don't have the chops for this shit,  I at least need to pretend until I lose my marbles completely. 

So, I have to HAVE to have to go to the library and get some biology books.. and some pre-calc and just start homeschooling. I'm terribly terrified I will give up. I need to be self-motivated. I need to rise to this challenge.. easier thought than done.

JR's got a head cold. I will be losing my shit sooner than later if he gets eli sick. I googled sick on his drugs and came up with colds turning into chest infections. :/

I must get to the DMV and library, like yesterday.

 
 
 
 
 
 
Getting ready to head to the clinic and do a ton of things today. Always nervous as to what they want to do with him. Chemo's for sure, but the IVIg in the hospital is something we wouldn't be excited about.
Time to eat our breakfast and get out the door. Will update [hopefully nothing but facts] when I get that second. :]
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12:43
Like a cosmo flower, chocolate scented blossom fully smiling at the sun. Seedlings bury inside her beauty smiling back at her sons.

Eli's asleep on the couch now. Very busy day so far!

While waiting in the waiting room, I met a man whose daughter looked to be going through chemo treatment. She was just as friendly as Elijah. The silent smiles, but rather nothing to say. Her dad overheard my friend mention the treatment and said she had started off with the same thing. I believe she's in the phase after they up it. I was glad to meet someone else. I was also glad that we purchased this hat for Elijah.

I was introduced to giving Eli his shot of Methotrexate. Definitely wasn't the best I'd ever done (because I've never done it). Next time I will count down and make certain he's ready for it. I will also give him the numbing cream we have. :]
They also drew blood work. I'm anxious to see the report. He's doing very, very well! Progressively speaking. Although, he flares in the sun and yet the Dr. refuses to indicate that the vegas heat is responsible for anything last week. Funny, funny.
Today I am not at my whit's end and neither is Eli. He sleeps soundly in his new forty niners hat, happy to be done with it all for now.
We had many giggle on our venture to and from the clinic. Eli was being a bit of a pain in the butt before the shot, but afterward he allowed all that anxiety to melt away. :] He even became unusually less conservative and turned into a goofball with Lisa. lol :]

I'm not so nervous about giving Eli the shots, but that he might start getting mad at me :/

Good news is we're tapering him off Prednisone. This week he's taking 40 mg and next week 30mg and we don't have to go to the clinic for two and a half weeks. I'm wicked interested in the blood results and will be ringing their phone a few times this week, I'm sure. I'm also going to request the labs myself. I hope we start off on the right foot and they'll be easy to work with.

I have to go pay rent, apply for SSI for Eli, and clean clean clean. Call the speech therapist (apparently it's twice a week via mother last night). So we'll see. School starts soon. I'm only 90 percent sure I'll be taking one class, and if I do it's pre-calc so we'll see. I want to be sure I have all the time in the world for my son.

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20:14

So he started swelling like a balloon earlier, I had his aunty drop off a smoothie. He drinks water like a fish, so that was a bit distressing.

I need to ask my JDMS friends about the process of upping methotrexate and tapering off prednisone.

I did absolutely nothing accomplishing for the boy today. I had a huge mental break. Tomorrow I have the speech pathologist coming. It has to be three days since we have a LOT to work with apparently. :[ Good news is he said his soft palate was weak, but is working . This is the last thing to come back, so I am more than thrilled by this as good news.
I need to make a few follow-up calls and clean.

Otherwise, I'm hoping for another mental break and a movie like Mr. Wrong. Hopefully, Jonah will start his naps again. he hasn't since the hospital, but today he took one.

The idea that this is long-term stuff is absolutely exhausting. I will not be broken. Next week, I will do more research.. maybe even sooner. Day-by-day, Jacqui.


Applied for SSI ..

Information to save: 10416 s. eastern ave
89052
SS office.

Telephone on the 16th 10:45am.
My license
birth certificate
rent receipt copy
pay stubs list
two vehicles
make model and year
see checking and savings bank statement.
medical information.
 
 
 
 
 
 
Well, Eli did tremendously today.

Tomorrow he goes for treatment, but he really tried motivating himself today. It's always at the end of the week when treatment is up that his disease seems to fluctuate with symptoms. [rash on eyes and nasal passage].

We got him out today and went to the mall and he walked and we purchased him a fitted forty niners hat. :] Then we went to walmart where this crazy mom repeatedly voiced her concern about touching anyone or anything..... (I held all three so super close and it's a good thing I left my hand sanitizer behind... I was going nuts! I even glared at anyone who dare defy our path.) He's been taking his vitamins and medicine like a champ, even when he just breaks down and cries. He somehow managed to continue to let me talk him through it.

Petra [A JMDS parent] who made him a prayer shawl and also purchased him an IGIB bear [bear with own needles and such, will take pictures] has sent them and they're on their way. :]

He played some football with his brothers today and we put mousetrap together to play it for later. I'm really proud of this guy.

Tomorrow's Monday and I'm feeling rather pessimistic. When I think of anything, well.. it's probably not a good idea to think. I'm just trying to focus on moving forward and not the emotions of it. Can always consider the emotions of it, but some days are harder than others.

My sweet friend was telling me she understands having to bury her mother, father, step dad, and grandmother. I haven't touched the idea of burying Elijah. It feels like multiple stab wounds to the chest and I don't think I could even reflect on that thought. I've tried, obviously here, I've tried to touch the fear that people smell when I see sympathy in their eyes. Don't look at me that way. Don't tell me it'll be alright as if something could be wrong. Let me handle this my way. As I let you pray, hope, wish, cross fingers and toes, etc. This is how I cope. I snub my nose.

We stayed up late watching Alice In Wonderland... I love that movie. :] :] JR bought it for us. Tomorrow JR goes back to work so our mini-vacation is over. :(

I have so much to prepare for tomorrow.

I have to download the ss application for Eli. I have to fill it out and fax it asap. I hae to take Eli to the clinic. Ugh. I have to do this for a long time. I have to clean and organize my paperwork. I need to make sure I'm not forgetting something even though I'm forgetting everything at this point. I HAVE TO PAY THE RENT! THAT'S IT!

I have to breathe.

Okay, Dustin has Eli's wheelchair! lol. this has caused MUCCHH amusement in these parts. :]

I'm honestly trying to fight the feeling of being so very small to something so very large. As if the moon is coming in for a landing in my backyard.

I need to call my ped and get the other two tested. I don't even know if they even know how to do that. Question for docs tomorrow. Monday. Ugh.

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22:33
Trust is faith inside reality. I'll have faith, you keep the reality.

Trying to work on SS tonight. i have a photo timeline that's been helping me continue to document. I don't even know why I'm doing this when i stop and think about it, except that it helps me. For some unknown reason, this is what I'm supposed to do.

Time to cuddle with Isaacy bear. <3
 
 
 
 
 
 

Been taking it rather easy today. Helped some friends out and left the two older ones behind. It was great getting out!!


Now I'm excited to study the immunoglobins. Immunoglobins are a protein production of antibodies that attack foreign objects which enter the body.
So far I'm learning that IgA has two subclasses IgA1 and IgA2. What's interesting is that these immunogloblins are both found it the  " mucosal immunity." Such as secretion, tears, saliva, and intestinal lining. A small amount is also in the blood. It's largest heavy chain is found in type α. (which trying to follow up on this, I read about many different avenues then realizing these avenues are more like california road maps. As my second oldest sister once described it, a bunch of spaghetti thrown onto a plate and labeled as such roads, freeways, and highways).

 I can't build a house starting from the top, so ... I'm going to start out with my books currently and then go to the library hopefully on Monday after Eli's treatment.

Going to watch Book of Eli with the fam now. :]

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16:18
Interesting, interesting.
http://www.helium.com/items/1559045-ige-immunoglobulin-antibodies

"IgE is the immunoglobulin associated with allergies and parasites. In fact, it is theorized that it's original purpose in the body was to fight parasites in the digestive system. However it is now mostly located in the mucous membranes and lungs. When a foreign substance or allergen enters your body, IgE is produced. When the same allergen shows up again, that particular IgE is ready. It attaches to certain cells in your body (usually mast cells) and causes the release of histamines. This is why your allergy medication is most likely an antihistamine. These products counteract the histamines caused by IgE. An allergic reaction started by IgE immunoglobulin can be as mild as a runny nose and itchy eyes, or as deadly as anaphylactic shock.

"It is still not known why some people have such severe allergy symptoms, while others experience mild symptoms or none at all. There is a genetic tendency for some individuals to more easily produce IgE immunoglobulin, but this is not always the case. IgEs can also be associated with some auto-immune diseases. These diseases cause your immune system to turn against your own body, attacking healthy necessary cells. The medical community is not yet certain of the root causes of these auto-immune diseases.

"If you suspect you have an allergy, your doctor may order a blood test to determine the levels of the different types of immunoglobulins in your body. While antihistamines can be an effective treatment for the symptoms of your allergy, they are not a cure. You will have to take them consistently when your symptoms appear. Antihistamines cannot be targeted specifically to your area of need, so they tend to dry out all of your mucous membranes (not just the affected ones). This can be an unpleasant side effect for some people. There is new research being done to determine if a better understanding of IgE immunoglobulin and its actions could lead to new treatments focusing on blocking the antibodies from producing histamines in the first place."

 

 
 
 
 
 
 
Last night, Eli lay in bed watching ESPN. It was past bed time (10pm) and I changed it to George Lopez. We laughed and laughed. I looked over and noticed some rash coming back on his upper eyelid. Hm.

I asked him what he wanted to be when he grew up (again to assess where we're at). He shrugged and said, "I don't know." Tears started welling in his eyes and I asked what was the matter. He explained to me that he doesn't think he'll ever be able to play soccer again. I told him he will again and that he shouldn't worry about that.  I tried consoling him with words... didn't work. He's starting to understand more. I told him not to lose faith and we both need to be strong. We'll get through this he just can't give up on me.

I asked if he needed someone else to talk to about it maybe. He says nothing. I will be calling a counselor for him next week. I ended up holding him the rest of the night as he lay crying in my arms. I can't continue to let the hole eat me alive, so we prayed and asked God to take it away. I waited for him to fall asleep and I let myself cry a little. I had to really focus, but I felt my faith.
He's sleeping now. Still so sullen, so tired. There is still Elijah deep down inside, but he fades like a ghost so rapidly. We have to hold onto his spirit.

I hope this doesn't change him. He's so strong. He always has been. 

Enough research. It's time to build patience. Right now, I need to spend my time with my guys. I need to create a level of normalcy where he feels confident again. It's time to go and actively fight his depression every day.
C'est moi ou la vie.

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I've seen a goodside a bad a downside an up and everything between -
17:53

Accomplishing daaaaaaaaay! So, in-home nurse visit also left a wheelchair (which I missed it cuz I was stuck at the DMV all freaking day).

Speech therapist came too, and apparently no luck with Eli's ability to not cry through it. Gonna have to try that one again... Rusty (speech guy) apparently tried doing an assessment from the information I'm gathering via Eli.

Got the disability plates and plaque, after a really weird adventure at the DMV. Almost felt like I stayed up for three days and had the weirdest people converse with me. Funny thing is there was a consistency to it. Their children from each separate conversation were destroyed by this town. Very, very different people.. same conclusion. Should never have raised their family out here. Something to consider... on top of that list that I have to consider or already have. Fun.

Got cleaners to professionally clean our entire house (except nana's room). Paid a pretty penny, but it got done. Good.

Plucked the weeds out of my life.

Elijah was very upset that I had to show some tough love with him today for doing a physical activity, but we worked through it as a family and he ended up playing soccer for a solid 10 minutes with big smiles. Heeeeeeeeeeeey! There's my guy. :]

When I held him after and we told him how proud we are of him, I asked him how he felt and he said with a big cheesy grin.."normal." :) <3

Also upped his in-take of "supergreen juice" along side his vitamins and acai juice. 


Sooooo I'm pretty beat and we're off to do more painting and watching the ninja turtle movies. Gotta buy that second one!!
 
 
 
 
 
 
Today started off rather difficult.

I had Isaac's dr's appt which he has somethin' going on with his eyes whether it's viral pink eye (which WAS at the daycare I last worked at for a few weeks) or stye's... he has medicine he HATES. He already hates anything in his eyes, so that's fun. It wasn't devastating news in the least, but he did the same scratching his head maneuver and I couldn't find my breath. I believe my son's disease is triggering my PTSD which is the hardest battle I've ever had. That and depression, but I'm fighting because I'm capable and I appreciate life more than anything in the world. Specifically, my kids.

Things got better as the day progressed. I had some very lovely conversations and some very distracting ones as well (also lovely).

I have to list all my thoughts because keeping up with everything is starting to become super overwhelming:

Along side the Dr.'s already, I have Dr. Wu and Dr. Rider (helping with consultation). She said to seek Dr. Shahaam Brocha.  Just might do that. Also, I'm eligible for the NIH research study. It's an open study that is for JMDS children who are twins or have siblings. We cannot do this until Eli gets used to needles. He hardly realizes this is until further notice. :[

Dr. Rider advised me to seek a second opinion at the LACH which is EXACTLY where I can and will take him.
I faxed over reapplication to get on the Katie Beckett program through the state as well as JR's p so I believe that we are in a serious world of financial hurt if I don't come up with a running game plan that Eli's eligible for. He won't listen to me. We're claiming his workers finances as well which seems that our gross income is a lot, but it's larger (about roughly $1000 monthly more) than what we make.

I have no choice on the matter. It's easier to just deal with it. Pettiness is just what it is, pettiness.

I spoke with Bobby AND Sharon via our insurance. They're really just assessors, but they said they'd ask where his wheelchair is.

First thing in the AM i have to call welfare and speak with a supervisor to someone because they're incapable of punctuation.
I also have to drop off this medical document that states Eli's perminently disabled so we can get our new plates for disability. :/ Not something I'm enjoying like I would if it wasn't me. I'd rather walk across the world with my kids than enjoy the closer parking.

Then Seashell came over (Chelsi) and seerrriousslly helped me gut and rearrange. We sanitized every toy, re-arranged Eli's room for medical equipment,  and cleaned out the playroom and it looks and feels organized. I'm very thankful.

I still have so much to get organized and do, I'm swamped. I'm also running low on fuel. I'm ready to put all on pause and get away. By myself. 

I have lots of support going on. I hope this is long-term. I can do this. I have yet to call Verdawn who has some wise sentiments, I'm sure. But that's more than a handful of supporters. I've never EVER asked for help, but I realize I am incapable of doing this alone. :/ I might be weak, but I'm somebody's mother. I need to focus on continuing and not letting my feet dry in this thick cement.

.....So, ....having another baby, I don't think is good for my mental health. Not in the least. However, I will be researching stem cells so I won't shut my mind off, but it's just too soon to consider unfortunately.

I also am going to look into immunoglobulins as well as the prostaglandins. I'm probably going to purchase a biology ahead of time. considering anyway.

Tomorrow, I get my carpets steam cleaned. Please steam clean my dog o.o

Eli's had a rough few days. Today he's waaaaaaaaaaaaaaaaaaaay lethargic and lacks energy. He's still there... somewhere.. inside..

I also called for counseling for him... we have coverage...
 




This end brings me to my rant, so fair warning from this point on it's all opinion.

My MOTHER. Oh jeez. My mother. The one who cries pity since the day she was attracted to men and the one who gets jealous if someone else receive love. So jealous. Need I remind her of her actions and choices in her life? No, I don't. Why? Because my respect for her is zero in the department as my mother. For Eli though, she continues to wake up in the middle of the night (so she says but I believe it because she's a crackhead) and checks on him. We take turns doing this. She also bought him a few games and does the laundry. So, that's fine. Just keep your door to your stinky cave shut, old woman.

I can honestly say that I'm quite frankly, sick of those who CHOOSE to give up. If you want to die, then die. I realize this sounds a bit crass, but if I wanted to die, I would. I wouldn't continue to speak about it. I respect life way too much. The fact that we are alive is a miracle in itself. Why let so much time go to waste just so you can truly feel what regret is?

I love my children. They're my reasons.
However, if I ever lost any one of them. Lock me up. If my whole purpose dies, I die with it.

until next time.

 

 
 
 
 
 
 
I spoke with another Dr. Her name is Dr. Rider and she gave me promising information in a consultation over the phone.

I was told about a study they do out there for children with siblings so we qualify. However, we must see the LACH first. Also, she diagnosed over the phone she does believe this is what it is after questioning me.

Also, I have somewhat of a timeline for things and I need to start focusing more on the insurance. Maybe I should go to LACH before ins. runs out. I'm nervous about that.

I have a pending wheelchair coming in with weatherguard, I believe. My buddy Dustin who's a tattoo artist is going to "pimp" it out Star Wars style! I'm hoping this helps Eli adjust. He's so independent and REALLY, REALLY hates being sick. He's getting psychologically over it and I'm worried depression is kicking in.

He's been nothing but tears all day. He just wants to fight me about everything and his bottom line is always, "why can't I have normal.. eat normal... be normal?"  Now I have to figure out how to help him adjust to all the needles and treatment.

In other news, my spirits are brighter. We played clue together and Eli won. (I did help him win at the end but he mostly had the answers). Daddy didn't even see it coming. lol!!

It's really the food we're fighting. He hates everything and it's getting worse. He was NEVER this way. NEVER. He also has had some pretty harsh flares today. Couldn't move so we had to put him in a cart at home depot when going to see the venus fly traps. I notice with his flares and crying, his heartbeat progresses. I don't know if it's from sheer disappointment or exhaustion.... but I can safely assume it's from treatment. The kids pumped full of craziness. Trying to convince him to stay home or eat good food is an extremely difficult battle. Especially since I'm trying to explain to everyone else around here that he really can't do that stuff. Although, I want him to just as bad. I hate always feeling like the bad guy.

Fighting this together is all we can do. Praying that we get to the light at the end of the tunnel is what we hold onto.
He's doing amazing otherwise.

I still haven't made any decisions about another child. MORE stress, MORE worry.. I am absolutely at a no, but for my other son's and to have my complete fourth is a beautiful thought in retrospect, it's just that I feel obligated to go against my own reality.  I'm in hell.