Molly's World 2

Saturday, August 16, 2014

A Pair of Green Pants With Nobody Inside Them!

The kids were with Gramma/Papa today. Judah had his usual music in Portland & speech therapy before he joined them. He was very physically active in both. Thankfully the new speech therapist followed his lead instead of forcing him to sit at a table. It sounds like they ended up doing speech in the gym, which we're totally okay with. He needs that sensory output, it makes him feel good & when you feel good & you are doing something you enjoy you are much more apt to learn.

Scott & I went to an ASD support group meeting. We were talking about epi-pens, turns out the 2 others who were at the meeting also carried epi-pens. One of the women had both of her daughters at the meeting - they were busying themselves with pen & paper & an I-Pad. This lady told a story about stepping on an underground beehive (had no idea those existed!!) at a yard sale. Apparently she is VERY allergic to bees. She had her girls with her at the yard sale. The point of her story was that the schools need to educate kids on epi-pens. Anyway, one of her daughters immediately recognized what was happening and told the woman at the yard sale that her mom was having an anaphylactic reaction & needed someone to use her epi-pen on her. She told the woman how to do it, the woman gave her the shot.. and saved her life. That little girl was sitting right next to me. That story gave me chills. That little girl deserves paid college tuition or something of that stature! She saved her mom's life. You only have 5 minutes to get the shot done before death creeps around the corner. She did some serious life-saving. She told us parts of the story as well.

I was able to go through the boys' clothes & pull out, store, re-organize, etc. to get them to a place where they could shut their drawers easily & even ended up with an empty drawer somehow! It became the new spot for Judah's shoes.

Judah was more progressive than yesterday. I'm curious if the folinic acid & the medicine we use with the nebulizer were big factors in his recent jump. We ran out of both on the same day. Once they were gone the sentences left as well. We're trying to get them ordered, but likely won't be until Monday. They both need to be kept refrigerated. We made the mistake of ordering one from his naturopath in Or. City. It arrived, but by the time we checked the mail it had warmed in the metal mailbox in the sunshine & was no longer usable. The cold pack was room temperature. Why was this not delivered to our door?!!? We didn't even get a refund. And that stuff isn't cheap. Don't even get me started. But anyway, my point was that it's crazy how much vitamins & supplements can do for your body - it's basically detoxification & filling in the missing vitamin gaps from what I've gathered. A chain of actions & reactions inside the body begins as well I'm sure..

Sebastian told an awesome bedtime story to me tonight. He turned off the lights. He & I laid on my bed & he turned the dream light on. He danced his fingers over the lights, making shadows across the ceiling. The ceiling was covered in lights in the form of little stars, slowly changing from one color to the next. His story was about a little boy being chased around by a pair of green pants, with nobody inside them. (his favorite Dr. Seuss story) In his story he said the boy ran 102 miles to get away from the pants! And then he ran one more! haha. He ran so far and got so tired that he needed a.... a drink!! It was a really good story, surprisingly good. He asked me to do one. Mine didn't compare to his, he agreed. I said, "Well, mine definitely wasn't as good as yours!" He said, "Yeah, I know. It's okay."

Judah didn't poop today & didn't have much of an appetite.

Meds Completed

Vitamin D3 2000 IU one daily(morning)

bethanechol 25 mg 1/2 tablet 2/day (took only 1)

DMG 125 mg w/Folinic Acid &Methyl b-12 3 capsules in morning

WP Minerals 1/day

Sleep factor

Creon (pancrilipase)

Oxy-Mag Powder 1/2 teaspoon 1/day

Molasses 1 tsp in almond milk

Levocarnitin 10% 1 Tablespoon 15MLS every morning

DOCU 150/15ML Liq Hi-Tech 2 MLS

his b-12/folinic shot

Miralax

Probiotic 1 daily in morning

Meds not complete -
There were in milks he didn't finish:

bethanechol 25 mg 1/2 tablet 2/day

Meds didn't take -

Powder B-6 1/2 tsp (fridge mix) every 3-5 days
skin rash med not needed
Fish Oil
Beta TCP 1-4 daily
Organic coconut butter 1-3 tsp/day - 1 tsp
Iron up 1 tsp/day

Meds we don't have -

Glutathione (nebulizer med)

Friday, August 15, 2014

Driving Time

We didn't make the cut. He doesn't know enough language to be in a research study showing how kids his age with his diagnosis learn language from their older sibling (kids Sebastian's age). Soooo that makes sense. I'll spare you my thoughts... until I copy & paste them from the texts I sent Mom when I needed to unload. ;) So basically we drove to Portland (new helper in tow, not literally, she sat behind me), Judah played in a room with strangers for 20 minutes, we drove away, got lost for quite some time & eventually found our way home. In preparing for this interview the night before, I did end up making a folder of fun (I hope) work for Judah that he can do with the helpers - practicing sentences, identifying objects, people, etc. Most, if not all, of the ideas in the book are for him to work towards his IFSP goals. Unfortunately he had no interest in looking at this folder on the way there. The community inclusion that the helpers do on top of that will undoubtedly provide him with the social interaction piece. They are so eager to get him out. Yesterday the helper wanted to stay here all day - which I told her I thought was the best plan too. He was able to get comfortable with her. Even saying, "Bye Maria!!" when she left. We didn't even realize that he remembered her name! We brainstormed outing ideas on the way to Portland. All of the driving was beneficial in that it did give her & I a lot of time to talk. She was able to get a lot of her questions out & I was in a spot where I could answer them with little distraction. I told her that I'm working on a book.. a Judah book, filled with basic info & helpful info that she will be able to use as well. A lot of the answers she needed will be in there too. I'm hoping to finish that book this weekend & then we will make copies for the 2 helpers, for them to have in their car & then have one here at home as well.

I've got more thoughts than this on our experience today. This is basically the short draft. My emails to Mom..

Didn't make the cut on the Portland State research opening today. He isn't saying enough 2-4 word sentences to participate in a study showing if and how spectrum kids Judah's age learn communication (only verbal communication - other ways of communication are irrelevant and useless apparently) from their 1-4 year older sibling.
She said since he didn't know the sentences he was less likely to learn watching Sebastian on video. And less likely to learn other skills from Sebastian than 2-3 word sentence speaking kids with autism. I corrected her, letting her know that much of what he has learned has come from Sebastian, and let her know that his school speech therapist was shocked at Judah's level of communication when she came over to play with him at home.. A natural environment for him. They asked if he was being like he is at home. I told her, "Well, at home he isn't locked in a room he's never seen before with complete strangers." Not to mention the photographing and video taping they did 3 feet from right from the get-go. The session ended early, Judah wanted me, turned the doorknob only to find that it was locked, then 2 women stood in front of him begging him to play with toys. He took their toys, walked over to the toy box, put them in & closed the lid - communicating absolutely nothing because he wasn't speaking. Meltdown for Mommy ensued, I spoke with clinician, Bash didn't get to do the interview part that I had told him he would & we left, only to miss the freeway exit and spend half an hour driving around lost in Portland. The End.

I also clued her in on the fact that a ton, if not most, ASD kids are non-verbal and that over half of those kids will never be verbal (a very upsetting statistic I've read). They will spend their entire lives communicating & learning to communicate in other ways. Communication doesn't come only in one form.

Is it surprising that they've spent months looking for a kid to fill their last opening in a study that provides twice a week sessions for 10 weeks of FREE THERAPY working with clinicians and students in the field? They've even added a $100 Fred Meyer gift card to the deal now.

Thursday, August 14, 2014

Send Us Wonderful, POSITIVE Vibes for Tomorrow!

I spent the first part of the day rolling around in bed with a migraine.. in case anybody was wondering how I spent the first part of the day. How did you spend the first part of the day?

My doctor called - the guy who did my surgery. I had called in yesterday & talked with the on-call doctor when I realized that I was bleeding (spotting). The on-call doctor was very heart-felt with his guidance- I told him my concerns & he said, "Yeah, that would be stress." Helpful.

My doc told me this morning that there was an actual reason for the spotting. The gynecologist had put an instrument called a uterine manipulator on my uterus. I think pictures would be the only way to make this blog more graphic & weird. Sorry. When he says that he put an instrument on my uterus obviously I'm thinking that this means I now have an instrument on my uterus. Not like a tiny saxophone or anything, but some kind of medical device, that I was completely unaware of at the time, & it was put inside of me and not mentioned until I was safely out of the hospital. I should probably look into this one.

My infection was directly behind my uterus. The "manipulator" was likely something that acted to get the uterus out of the way so the doctor could get the 2 1/2 hours of cleaning out my insides started. That's my guess.

He said spotting could happen for the first 3 or 4 weeks. Can you imagine if he hadn't called & I'm bleeding for a freaking month... between a manipulator & growing stress my blood loss could have put me back in the damn hospital!

Judah progress wasn't much if anything from what I saw today. I didn't spend enough time with him today (thank you migraine). I assumed he was unhappy with me about that. He didn't seem to want to have much to do with me. Meemaw said his speech was less today. I blamed myself. Then Scott reminded me tonight, struggling to keep his eyes open at 10pm, that he & Judah didn't sleep last night. Ahhhh... that could be something..

I'm hopeful for tomorrow. Tomorrow we go to Portland for the SocialSibs interview. Judah will do the first testing on his own. If this goes well they will pull Sebastian in for the sibling part of the interview. This is basically a screening for the last spot available in this research project. Last year we didn't even qualify to interview. Next year I believe the project will not fall into the boys' age groups. Here's a link to describe the project. (Look at the SocialSibs portion.)
http://asdchildlab.research.pdx.edu/projects.php

Susan, Judah's helper, and all of the kids are going tomorrow. We're packin' 'em in like sardines! Hopefully there's room for the Gramma snack bags! Those are the key ingredient to traveling with children, and they even work well with NO CHILDREN in the car!! ;) Everybody has to go in order to have kid coverage at all times, no way around it.

Last night I'm laying in bed with Willow & she looked down my shirt. Then she introduced herself to my breasts! Each one of them! (thought I'd throw this story in here for her future enjoyment) She said very politely to each one, "I'm Willow.." putting her hand on her chest.

Meemaw said the helper fill-in went above & beyond today, going as far as to change Willow's diaper! Meemaw said she did other things that were not her job, but that were very helpful. She said Sebastian was super good. Made me feel better since I was non-existent half the day. I let the helper know how incredible the helpers have all been & how Judah has changed unbelievably with each day. She said that made her feel so good. I hope she spreads that on to her supervisor, she should know how awesome her staff is.

Judah had all meds except fish oil nebulizer (out), folinic acid in injection (out for past 2 nights), Beta, skin rash med (not needed), B-6 (not needed), Oxy-mag, molasses, 2nd dose of Docusate, no miralax, last 1/2 pill of bethanechol, iron up, eye drops (not needed - already done twice this week) and vitamin D3.

Wednesday, August 13, 2014

Commitment

Commitment
Sorry, no, not about relationship melodrama.. I'm not the type of person who likes to "air their dirty laundry", so to speak. Please, totally not me.

FYI- "There's an app for that!!!" Blogger has an app, who knew! I just put it on my phone the other day. I haven't tried it yet.. or even looked at it at all really, yeah honestly I just happened to notice the unmistakable "B" logo on an apps page. It popped out at me, so I actually did none of the work on this one. If anyone reading.. any one of you three people that read my blog.. have thoughts or experience with this app let me know! I'm interested to try it.. and I don't want to waste my time. ;) I really do hate wasting time. Have I mentioned that I often spend hours of my evening writing in this blog? Hours. I hate wasting time, but time management is so hard for me to understand (but it's obviously worth the time to learn it, especially if you hate wasting time - yes, I realize that).. and it sounds like such a hard thing to do, to "manage" your time.. it sounds like a lot of work!! And I really suck at following through with things.. anyway, it's just a lose/lose for me on the time thing.. mostly I just give up.

My 3 blog readers are like the definition of commitment. And I say 3 because that's the number I came up with when I was thinking about which members of our friends & family would actually have a genuine desire to read this blog. And then I added one for 'crazy internet person'.. (hopefully there's not supposed to be 'an aka my stalker' at the end of that). I didn't let myself think about who would actually have the TIME to read my blog (feel free to use that as an excuse by the way, it's completely true, even if you really just don't want to read it.. who has that kind of time?!?). If I minus the people who don't have the time, then I would have to subtract from the 3, and I'm struggling for air here as it is. So 3 readers.. I'm stickin' to it!

I started this blog for my kids. Not long after that, I realized that there was NO WAY my kids were going to read it. It's way too much reading material for toddlers.. I have enough to do as it is!! Just kidding!! But 10 years from now, when my oldest MIGHT have an interest in reading this blog because he wants to know what Mommy has posted about him on the INTERNET over the past 17 years... sadly enough, he'll never get through it. Because even THAT kind of motivation/desperation won't pull you through it. It's too god damn long!! They'll never read it. That's why I've started the cussing, might as well! And besides, it gives my readers a silly reason to justify skipping some of their blog reading time if obligation has been keeping them here. Cussing is offensive!!! I don't want to feel guilty about that shit. I don't want to be responsible for stealing large chunks of time from someone's life. And no Sebash, there is nothing dreadfully awful that will forever handicap your life in some way in this blog. Don't worry about it.

So yah, my 3 readers..
They aren't obligated to show that they are committed to reading my blog, our blog, whatever.. but I can tell that they do! They don't tell me because they don't want to brag about being such committed people.. or maybe because they will think I'm going to judge them as "crazy" for wanting to keep up on the typically uninteresting commotion of our family.. or perhaps they don't want to say anything for fear that their words will inadvertently affect someone else in the room & then that person will suddenly feel guilty about not reading my blog (I wouldn't be able to keep up with it either, man, it's okay!). And so now the committed people have just unintentionally convinced the family member, that I talk to maybe once a year, that they should feel guilty about not reading my blog. And then the family member that I talk to maybe once a year decides that NOW would be the perfect opportunity to shed this unnecessary guilt from his conscious.. and obviously the best way would be spoken apology in front of the entire room.. because then I have no choice but to openly forgive them. Tricky bastards. And of course now the committed people are feeling guilty about the family member (that I don't even remember the name of half the time) suddenly giving me a huge, negative blow to the heart and forcing me to suck it up in front an entire room full of people.. leaving me with all of this as a memory.. that I will undoubtedly be forced to re-live in random conversations throughout the rest of my life.

And there's always the likeliness of a ripple effect after the first announced apology.. that could be a really shitty day for me.

So if you read my blog don't tell me. If you don't read it don't tell me. Those are the rules, I've just decided.

I apologize if I have just turned this blog into a daily "Me! Me! Me!" rant. I'll still put Judah's med list at the end. ;) Just kidding, I'll still write about family in here, it may just be funny stories, but they'll be here. It's just that I can see a bit more clearly now that my kids wouldn't want me spending hours & hours of my life documenting their life. But writing like this is enjoyable for me.. they'll be much more okay with that. Even if I'm spending hours every night working on something that is just going to end up as a life-time's worth of reading material for plane rides & long waits. They'd still choose this over the documenting, because it makes Mom happy. Airplane reading material that will last you the rest of your life, that would be their positive spin, haha!!

Monday, August 11, 2014

Learning Battleship

Robin Williams died. I feel obligated to mention that. Honestly, I wasn't much of a fan, I didn't understand his jokes half the time. I always perceived him as full speed ahead, unable to stop & too nervous to try. I'm sure there are many that felt they understood him inside & out. Everybody loved him it seemed. His death was undoubtedly hard news for a big piece of the world to take in.

We had 2 different helpers today. The first one stayed for an hour, basically so we could meet her & she could meet J. She will be our main worker. The second one stayed for four hours. In the middle of these visits was 30 minutes of massage from R. When R left J said, "Bye.. mrry", which would be "bye Rosemary". Nobody told him to. His behavior & speech today has been nothing short of astounding. I can't even count how many times I was blown away by him today.. hand him the opportunity and he was very likely to take it. Initiating things on his own seemed to be no problem as well - it's just the words, the damn words. But best day ever for J Blue.. I can be across the room and say, "Hey Judah.." and he'll look over at me.. and listen. He repeated so much today. He sat patiently with the 2nd helper and played with her one-on-one for over an hour at least. He had more one-on-one time today than he has had in a long time. His sibs did okay with that. The helpers were laid back, 20s, students, females.. very kid-friendly & eager to help. The main lady is so eager to make a schedule. The 2nd lady told me that we most likely will be able to let Judah go on outings with them. And both ladies are very eager to do so - both clearly understood how important it was to give him freedom into the world & explore!!

I'm elated. I haven't met the second main lady - she'll be here on Friday. But the first two send a pretty great picture of opportunity, change & growth for Judah. Tomorrow we will have someone for 4 hours.. another new lady. Our main lady is just on vacation this week. Susan is here to help as well.

Confused? Main lady came to meet us this morning for an hour. She'll be back after vacation and will work Mon-Th. Another lady will cover Fridays. These two ladies will be our regular helpers. The others helping right now are filling in the gaps until the schedule starts rolling.

Susan was here all day. That helped so much. It wouldn't have been as relaxed around here had her help & presence not been there. It would have been a lot harder. There aren't any dishes in our sink!!!!!!! :) She's an amazing lady.. over & over again, patient & amazing. The kids are so lucky to have her.

Tummy pain was awful yesterday. This morning it was so bad I was calling the doctor. His office wasn't open for another hour and a half so I curled up on the bed & waited it out. Pain today was there, but mostly tolerable. My mind was definitely elsewhere, which I'm sure helped a lot. And then Sebastian would ask me to play badminton with him.. and I would suddenly be 100 years old once again...

I was able to sit down & play Battleship with Sebastian today. That is incredible. Sounds small, like many things, but not at all.. it's huge. He learned how to chart the letters & numbers as we went along. Give him a few days & he'll have that game down pat. We don't have the uninterrupted, one-on-one, mother/son time like that often enough at all. We'll play again tomorrow. ;)

The TV was off nearly the entire day. It was really quiet. The kids never once (that I heard) asked to have it on. Near the end of the 2nd lady's shift we did turn on SpongeBob for a bit. Judah never once begged me to play Angry Birds. It was a very different day. These kids are open to this change - they are curious & really want to try. I can tell.

Meemaw was surprised how well Sebastian is at the Pogo stick. He knows that practice gets him there - he's learned that one for sure. I've never met anyone that can jump on that thing as long as he can. He just got it last month!

I'm so excited about having helpers here... so excited! The kids so deserve this.

Saturday, August 9, 2014

Nightmare Turned Tomorrow

Hey, look at that! I made it back on here in under a week!

This entry is a big mess. My fingers are getting tingly though & I want to lay down. So un-edited it may be, but at least I captured a lot of my thoughts before they flew away... like little ovaries.. ;)

Yesterday I came home from the hospital. That ovarian cyst.. yah, totally non-existent. How about we try an appendicitis nightmare instead. Nightmare is pretty accurate, not because it was, "Oh yeaahhh, it was bad!" as my doctor described my situation, but also because this all happened out of nowhere! Suddenly you're on a metal table being scrubbed down quickly by people in matching scrubs. Your life as you know it becomes hard to remember & eventually feels pulled away from your reality completely, stolen. Here's the new plan sister.

Let's see.. the weekend consisted of sleep, pain, vomit, hell.

So we went in for the ultrasound early Monday morning. I had to drink 32 oz. of water by 12:30 and the ultrasound was at 1pm. I was told not to urinate the last hour before the ultrasound. However, I had been very constipated (red flag), and minutes before the ultrasound I seriously had to poop. The woman getting ready to do the ultrasound was very unhappy with my requests to go to the bathroom - finally she allowed me to go, telling me repeatedly that I was going to pee... she just knew it. While I was in there she even remarked to Scott about my behavior.. she didn't care for me at all. I came out & she told me that I had peed, she said she had heard it! I pleaded with her & told her it was just a few drops (which it was). Oh my god, what an awful woman... awful!!! She did the ultrasound, pressing hard on my stomach and telling me that I had peed all of the liquid out. She basically told me I had ruined the whole thing as I laid on her table, in pain & constipated on top of that. Next she tried using the camera, where she was able to see a mass. Once she saw it she asked Scott how long I had been like that but she wouldn't explain what she was talking about.

We went upstairs to the doctor & were told that she would call us with the results. The MA was talking with Scott as I began to get disoriented. Suddenly I thought we were at an appointment for Judah and began asking the MA about him. Scott told me that we were at my appointment. The MA said my labs showed a low electrolyte level. She told Scott that I just needed to eat something.

We went to eat & were called while we were there. They had found a mass & wanted me in for a CT scan right away. We had to be there at 7:30 the next day. And of course, they needed me to fast. I couldn't eat from midnight on, which wasn't too bad except that my stomach hurt so bad (red flag) that the only time I had been able to eat was around 3pm (which was where we were now).

We went in for the CT. They handed me a jug of fruit punch flavored mystery fluid and a cup. She told me to drink a full cup every 30 minutes for an hour and a half. Awesome thing was that I could use the bathroom! This drink was absorbed into your body, not flushed out like water. I used the bathroom repeatedly to pee, still constipated, like literally every 30 minutes if not more often. Scott slept on the bench in the waiting area.

The CT didn't work. I didn't have enough fluid in me apparently. She handed me the jug again, another hour and a half of drinking. The next CT worked fine. The doctor saw the mass & said she had done all she could. And she was happy, it was her half day.. there were absolutely no clouds in her perfect blue skies. Scott was concerned and mentioned that I didn't know where I was the other day. And our very professional, caring doctor says, "Oh yeah!" ha! "Carolyn (the MA) told me about that!!" haha. ?!?!? I guess that was my confirmation that yes, the nightmare had begun.

She sent us to the ER for what she called "total care".

From the ER I was fast-tracked.. which meant we were quickly in our own hospital room. ?? We didn't even take a seat in the waiting area.. we were second in line, through the door & before I knew it a lanky surgeon was telling me carefully how he was going to insert a tube with a camera on the end through my bellybutton (there IS a use for the bellybutton!) and if he found reason he would operate. The OBGYN, Dr. Frank, shook my hand and said he would be at his side in case my ovaries were of any concern. My surgeon, standing to the side of Dr. Frank, started flapping his hands at his shoulders, cocking his head to the side, when ovaries were mentioned. ?!? I was very quickly scrubbed down by 3 people in matching scrubs. I looked up, minutes before being wheeled into the operating room, to see the surgeon talking on his cell phone... his big, pink, teddy bear cell phone. And here we go!

It took them 2 1/2 hours to clean out the mess inside of me. When I asked the surgeon later if I would be staying the night he looked at me like I was on good drugs. I asked him how bad it was, thinking it probably wasn't THAT bad. He said, "Oh yeahh.. it was bad.. reeeheeeally bad." He talked as if he had never seen such horrific appendicitis. He said, "You had a mass the size of a baseball." He held up his hands to show me the size. He said it was just hanging out behind my uterus. He talked slowly as if it was so fascinating. "It was ball of infection lined in puss.. and there were liquids, all of these liquids everywhere.. there were perforations, you name it." The adhesions that were there were explained to me by a nurse later. Apparently they were parts of the appendix that had stuck to other organs and had grown to become a small bowel obstruction (my constipation) in my intestines. The doctor said, "Oh yeahhh, it took us hours to get it all cleaned out."

How long had it been there?? He said there was no way of knowing. It was like a spot of horror that had been growing inside me.. that I knew absolutely nothing about.. but it was in me. it was mine. It's gone now, and I'm left with an incision, pain, memories & a hole.. the hole terrifies me. It's about 3 inches below my belly button. And It's "okay" to shower per the doctor.. really???!

This was followed by a 3 night stay in the hospital. Pain, lots of pain across my tummy. I could only lay on my left side or my back. Today was the first day I've been able to lay on my right side. Today was the first day I've been able to bend over and pick things up. I'm still walking at the speed of a very, very old woman and feel like I'm still holding myself together - keeping my stomach from falling off of my body.

The morning the doctor (my surgeon) finally told me I could go home he commented on my fuzzy, pink slippers.. he had to know where I had gotten them. Then he told me the history of Gatorade..

And I woke up from the dream, my life is back. Turns out there was a reason for all of this. The day I came home I sat with each of my kids and spent time with each of them, just being present, focused only on our time together, nothing else. I can't remember what my days used to be so insanely consumed with. I can't remember why I didn't have time to take them outside to play in the morning - at such a beautiful time of day to play. I can't remember why I let Judah play Angry Birds for so long because I had to be doing something else.. I'm sure there were a lot of something else's that needed to be done, but my god.. if ever there was a time for me to stop it was then. And now I get to start over, slowly and with much help. My family has helped through every minute of this. Like I said, my life was pulled away from me when I was gone from here. I couldn't remember it & I didn't have to worry about it - because all of our babies were being taken care of, everyone I loved was okay. That was family doing that, every ounce of worry, they held it for me.. and took care of it all. And I can never repay something like that, but if ever the opportunity comes by, I will not hesitate one breath to give them the same, even more.

Another amazing, amazing change in our lives is happening at this same unique space in time. Scott's mom has come out from Oklahoma to help us. She was here the day after I got home from surgery.. that's how quickly she came. That's somebody incredible. My dad offered the same - an incredible, selfless act of love. Thank you Dad. He won't be here, but his gesture is just as powerful. We have also suddenly been offered help for Judah - 9am-5pm. The agency we recently contacted has people ready to start on Monday! His unique needs & challenges have not faded in importance during any of this. I came home to a different Judah. Judah came home today from Mom & Dave's and found me sitting in bed eating pizza. Scott followed him in. I asked Judah questions, he looked me in the eye as I asked him (no smile) and said, "Nope" to the ones that were a "no" answer and gave words and bits of thought as answers to the others, or silence (I think this is when he is frustrated in not knowing how to get the words out, so he plays and usually runs away). That kills me (the silence). I want to help him so badly. So today he was serious, and answered in some 2 word phrases. Next week PSU is doing some testing that we are participating in. They are expecting him to say 3 or 4 word phrases in order to get their help - we are going to have to hit the pavement hardcore this week!!!

Willow & Sebastian too were very different when I came home. The kids visited me in the hospital twice while I was there - it was like I was meeting them for the first time when they came, but they knew exactly who I was and what I was all about. Willow is talking, assertive & completely on the go at all times. She slept through the night in her own bed all night last night. I can see clearly now how ready she & Judah both are to be out of diapers. Scott said Judah went into the bathroom the other day & changed his own diaper, put his pants back on and went into the play room to poop! :) Sebastian was the one who had witnessed this. Scott had found the dirty diaper on the floor in the bathroom & had asked Sebastian if he had changed Judah's diaper! ha.

My hair is gone. I got it chopped right before everything happened. Things just aren't how they used to be anymore. I even use an I-phone now, gasp!!

Sunday, August 3, 2014

Waiting On The Rupture!

I haven't been on here in a few days. Thursday I had stomach pain that gradually got worse throughout the day. It was a combination of constant stomach pain & bleeding from both ends. I figured I had an ulcer. Thankfully I was wrong. The next day I went to see the doctor. She checked me out pretty thoroughly & then she looked at me, pointed to my front side & said, "Okay this is your period. This is a hemorrhoid (pointing to my backside). And this, pointing to my stomach, is likely a cyst on your ovary that is getting ready to rupture. She called it "the perfect storm".

When I went to the doctor, I laid down in the biggest chair I could find! When they called me back the MA did my stats, I crawled up onto their table and laid there for nearly all of the appointment. I may go back for an ultrasound tomorrow. It's not as bad as it was, but definitely not gone either. I asked her if the cyst rupturing would hurt. She looked at me dead serious, "Yes." Good gawd! THIS hurts I can't even imagine something even more painful going off in my stomach, makes me very nervous to think about!!

So yeah, I basically stayed in bed Thursday night - Sunday late afternoon. It was a challenge to walk. It was a challenge to pick up my phone & text. I was stuck in a bed and miserable.

I can't really tell you what's been going on with the kiddos. If Scott, Dave, or Mom are able to write something I will post it here.

Mom & Dave were out of town this weekend, doing this!

This weekend my mom traveled to Sequim, WA. This is the place that inspired her to write her book. Her inspiration came directly from an old schoolhouse there. The schoolhouse was torn down after she wrote her book. We don't know why. She did some book signings while she was in town. At some point, they ran out of copies to sell! They would have kept selling if they had more on hand, bummer! They run out on Amazon sometimes too. During her 2 book signings there, she read 40 pages of her book to the 20-25 people there to listen. She answered questions afterwards. So proud of her!! See More