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A forced staycation September 30, 2009

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The good news is that the movie, ‘Beverly Hills Chihuahua’ is growing on me. It’s O’s Obsession O’the Day.  And Emil thinks it’s cute and says, ‘wah wah!’ The not so good news is that we’ll be camped out at home this week. O’s 2nd e.coli test came back positive!  So, we get to start over with testing until we get 2 negatives in a row.  And the other news is that Baby E broke his foot yesterday.  That is what it seems anyways.  Peter and I got home from the ER Sunday night at 11 with the little guy in a boot.  His eyes lit up when J and M greeted us at the door.  He’s not bearing any weight 0n it and is not happy to have it on.  We went to the orthopedic dr. at Children’s on Monday. They ended up casting it.  Its a lovely shade of blue.  A little baby cast. I am glad that they casted it even though E screamed for the entire time that they were trying to put it on.  30 minutes of the cast guy named Wayne wishing that we weren’t there.  Me wishing that we weren’t there. E screaming that he wished that he wasn’t there. It had to be put on though because O and E were trying to take the boot on and off when he had it on that first day. O ended up really hurting Emil, but he didn’t understand. He so didn’t mean to. O has such issues with not understanding how much pain he inflicts upon others.  He kicked me so hard in the stomach last week, I threw up. It’s hard not to get mad at him but he just doesn’t know.  But, then again, it’s important for him to see peoples reactions to his actions.  He only hits and kicks and bites me, Peter, J, M, and E.

I don’t know if it is because the autism walk is coming up this week or because I have received such amazing support and empathy from family and friends, but this past week it was difficult to cope.  I’m super gung ho about accepting autism into our life.  After all, it already lives with us.  I like my life right now. Alot. I kinda see it like, well, until this point we’ve gathered our thoughts, our minds, and our souls and everyone is holding hands, ready to go.  Now we actually have to take the leap that we’ve been talking about and preparing for. Okay, someone has to count 1,2,3, go!  I started to get weepy and super emotional this past week about being that person. What if we didn’t and just stayed the way we were/are?  That’s not real.  The fact is that I’m ready to jump but just acting anxious and kinda savoring the life before we are an autistic family. Is it the calm before the storm?  Is there going to be a storm? When I saw O today and how he was…I think, what storm?  He was so incredibly good today.  No breakdowns.  So sweet.  Really connected.  E was far more difficult with his new super feisty behavior.  My goodness.  My Mom and I were conversing about this tonight and her comment that, “none of your kids are easy” is soooooooo true! I love these little monkeys, but good grief, they are tough!  Difficult and hard.  Sweet and savory.  Kinda the perfect mix.  The ideal dish has the perfect amount of sweet and savory, hot and cold, crunchy and soft.  This period in our lives is temporary and I am confident that the feistiness in E, the all around difficultness in O, the talking back phase of J…it is making them who they are.  I am fiercely proud of that.  My goal as a parent is to make each one of them the very best that they can be.  No more, no less.  Why is this so hard?  Through all of this craziness of the past week, with O and E, it was really nuts, but I feel that we all pulled together to help each other out.  THAT is what family is about.

Lovely O September 23, 2009

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Since O can’t go back to school until he’s cleared from the health dept from his e.coli, we had an outing today.  Just Ollie and I headed downtown.  We ran a couple of errands in which people were enamored with him.  Completely and totally head over heels!  I gave him a pack of gum and he kept on giving it out to anyone he met.  It was adorable.  People loved him and ate him up.  It was wonderful to watch him interact with people he had never met before. We parked at Pacific Place and went up the elevator at P5.  At P3, a very prestigious man, dressed impeccably, entered the elevator with us.  O immediately said, in a very O kind of way, ‘Hi, What is your name?!’  The man, who looked like he wouldn’t give anyone the time of day responded very debonair-like, ‘my name is Mark, what is your name?’  O said, ‘I’m O’ From there they were buddies and had a little chat on the elevator ride up to C level.  I was so impressed with O’s charm.  Such ability to disarm.  With in a few seconds of speaking, he had broken down any barriers that there were.  It was adorable and so soothing to just be an observer.  He turned around on the escalator and asked the very hip looking dude behind us, ‘hey, are you following us?’.  The guy was super playful back and said, ‘no, are you following me?’  He and O entered a playful banter of fun speech about following and being followed.  He offered him a piece of gum at the top of the escalator.  Of course.  Everywhere we went, he was Mr. Charisma.  Kind, personable people were like magnets to him.  I felt like a spectator to the World of O.  It was blissful and my cheeks hurt from the permasmile that I was sporting that entire time.  That’s right, I never stopped smiling.  He completely captured my heart.

After awhile, he started to tire and started to feel the need to be more in control of the situation.  Atleast that is the way that it appeared to me, observing from the outside, looking in.  He started to lay claim on what he needed and when and how.  How he needed to be belted into his seatbelt.  Ahhh…yes, the OCD in him appears in its full glory.  He suddenly decided that he MUST be belted in with the 5 point harness, with the bottom part of the latch facing inwards, NOT outwards.  Okay.  Now that I’m aware of that, I’ll do my darnedest to adhere to this new ‘rule’.  Goodness knows that tomorrow there will be another rule that I wasn’t aware of that must be upheld.  I wish I had some insight into understanding what might come next.  Is there not a handbook that I can buy?  A Cliffnotes?!

We were in Metropolitan Market with just enough time to shop for a few items for dinner  then go and pick Juju up from school.  O decided that he must go to the bathroom in the midst of the deli order.  So we went and it took 20 minutes.  Seriously.  There are such rituals, such delays, such a lot of spending time doing nothing. Yes, it appears like nothing to me, but it is his world and it is very important to him.  We were late to pick J up.  That really frustrates me.  If you know me very well, you will know that I have a huge amount of anxiety wrapped up in being on time.  It’s stupid.  Maybe one of O’s missions is for me to get over my obsession with this.  It makes me so anxious to be late.  I was having a serious anxiety attack in the Metropolitan Market bathroom while my son was playing with the STUPID machine that miraculously spits out paper towels to you when you wave your hand beneath it.  He was fascinated with it.  I was tremendously annoyed.  Every time he put his hand out and a new towel came out and he tore it off was like the first time he had ever seen it, even though he had just been witness to the phenomena 20 times in a row.  Not to mention how many trees that he just used.  He was super pleased with himself.  I consciously had to take myself out of the ‘I’m so annoyed’ space and bring myself back to the ‘this is truly fascinating’ space.  It would have been really cute if I didn’t have to be somewhere and was dreading having to pick up J, late, who was probably super ticked off with me about it.  Oh well, the apple didn’t fall from the tree with he and I in many respects;)

My two favorite take aways from today would be the sight of he and Peter sitting on the curb at Pike Place Market eating a hot dog ever so enthusiastically, and O busting out into a major dance in the middle of Sephora.   That boy dances like no one is watching.  There is nothing better than watching him do that.  It is truly lovely.

I sent an email out last night seeking support of our situation and for the Autism Speaks Walk coming up.  Today I was truly overwhelmed by the amount of kindness and love that poured out of peoples hearts directly into mine.  I think that I am caught quite a bit off kilter by the amount and depth of the kindness that people are sharing with us.  Thank you from the bottom of my heart.  This experience has been so extremely intense from all ends of the spectrum.  From extreme sadness, to incredible blissfulness.  That is what life is about.

The best/worst parent ever September 21, 2009

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First of all, I have to say that I’m so sorry to those who were at Bellevue Botanical Gardens this morning.  My heavens, what a morning.  What a ruckus my children and I caused.  Mostly me.  I don’t know why, but I had little patience for dealing with my children this morning.  I apologize.  I don’t know why I had reached my limit much earlier in the day than I am used to. Good……ness!  I am still trying to comprehend what went wrong and when. How do I make it so that next time is better?  Because, yes indeed, I will encounter if not the same experience again, it will either be similar in intensity or more difficult.  E has been screaming and extremely clingy. O has been the same, but louder and more difficult to understand. Mostly, I think that it was my expectation of the morning to go well that was the problem.  I was so looking forward to let the kids run around on the big lawn there and get some gardening inspiration at the same time.  When we got there I realized that we only had the single stroller, not the double.  I was wrong in assuming that wasn’t going to be an issue.  I managed to make things smooth and got both of them into the single stroller and tried to make it a fun game.  It went okay until we decided that we wanted to get out and run around.  I couldn’t push the stroller on the grass.  The garden nazi in me wouldn’t permit it.  I think that I need to start getting over my rules and permissions.  The Catholic girl in me won’t allow it.  The Japanese girl in me is ashamed just thinking about it.  What a conundrum.  So, because I just couldn’t get over myself, I made the kids get out of the stroller to run around. When raising Julian when he was this age, he agreed to these kind of things. There were things that just were…that was just the way it was and he dealt with it.  Sometimes things were disappointing, but the Positive Discipline way of discipline and parenting style worked for him, and for me.  If I try that now it just completely backfires.  I could ask J, “would you like sausage or bacon for breakfast?”  He would always choose one of the two or three choices provided.  O always has said, “I don’t want sausage, bacon, or any breakfast meat for breakfast.  I only want homemade waffles with mini chocolate chips.”  There is no room for error or interpretation in that equation.  I have tried to play it up, joke around, switch things around, and I always end up making the homemade waffles with mini chocolate chips. Almost had a panic attack the other day when I thought that we only had regular chocolate chips, not mini chocolate chips!  Of course, this is just a metaphor for every single daily interaction that occurs in O’s world.  And, in case you didn’t know, Oliver lives in O’s world and we are all just mere pawns in that world.  So, back to the BBG.  I ended up leaving the place with two screaming, flailing children and myself in tears. Bugger.  That is so not what I wanted!  In the future, do I just go into an adventure assuming the worst?  That goes against my personality for always expecting and hoping for the best.  AND, doing whatever possible to make that situation the best that it can be.  Do I just need to be more flexible?  Yes, there is some truth in that.  I do need to be more flexible.

I signed up for the Autism Speaks walk today.  If you want join, please walk with me.  It is Saturday, October 3rd.  Here is the link:

http://www.walknowforautism.org/faf/home/default.asp?ievent=304949

I registered under Team Ollie.  More than anything I would just most appreciate your well wishes, but if you are wanted to join in presence, please join us, if you would like to join by sponsorship, that would be so much appreciated as well.

I don’t know about you, but I was the best parent EVER, before I became a parent.  As a single mom, it was a bit more difficult probably than most, but Julian was easier to raise thru the earlier years.  (who knows what will come next:)) Now I can only imagine that when people look at me as I am trying to corral my little ones that they must be appalled.  But, that is okay.  They don’t know.  They will never know. I was naive to think that way before.  I guess that life is just like that.  It all seems so easy until you get there.  It sure is far more exciting and rewarding than I had ever anticipated though. If there is one thing that I always resort to when I am struggling with who I am as a parent, I always wonder WHY this dear soul chose ME as their MOM.  There is something about me that they need.  There is something about them that I need.  I held each of my kids so tight today after today’s fiasco.  We may never be allowed back to Bellevue Botanical Gardens, but we for sure learned something about each other that we didn’t know before.  That is how it works, right…I definitely think so.

a day in the hospital…good times! September 16, 2009

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Well, now that it is a day since we got home and have received a diagnosis of e.coli for O, some of the feelings of fear and emotion have let down.  O had been complaining of upper stomach pain for awhile.  Months.  It seems to have gotten increasingly worse.  He was up a great deal of Thursday night screaming with stomach pain.  Emil also joined his brother in keeping his parents up most of the night.  I saw some blood like stuff in the potty early in the morning and decided to monitor it and call the Dr.  Her assistant said that we should give him some probiotics and pare down his diet, keep him hydrated.  Then my mom, who was at the dog park with O, called when I was with E at the park on a playdate with his buddies and my friends…she sounded terrified that he was passing blood.  I NEVER cry in front of people but kinda lost it at that moment. I got Emil and myself together, hurried home, and took O to the ER, with M.  My mom stayed with E. After various tests, procedures, sedation, morphine, etc, they admitted us.  We got to go home the next day.  Our new PCP, Dr. C. came in at 9am on Saturday and was ON THE BALL!  She had everyone at the hospital working for us.  She is someone you need to have in your camp when the chips are down.  What we were hearing was that none of the tests showed anything abnormal.  Platelets were low but that didn’t explain anything conclusive.  O had extreme stomach pain, followed by an increasing amount of blood in his stools.  It was sad to see him like that.  The spacing out spells increased.  The screaming never silenced.  Finally, he was able to fall asleep for a couple of hours at a time.  Peter and I slept on the pull out sofa there.  J’s friends parents took over and completely took care of him. (thank you!!!) E stayed home with M.  Everyone was in great care.  I was pleasantly surprised at the level of care at Children’s.  Both in the ER and after being admitted.  Very good to know.  We hadn’t had that positive of an ER visit ever.  Everyone was very kind and considerate.  When O hurts, he is very effective at broadcasting his sentiments to the world around him.  I think that he has very different pain thresholds than other kids his age.  He is not tolerant of pain at all.  I have a huge tolerance for pain, so it’s sometimes hard to bear watching someone writhe in pain.  It’s hard to know how severe the pain is because he reacts to any pain in the same manner…screaming.  It’s hard to absorb.  Or deflect for that matter.

One positive thing that I can point out over the course of the past week is that O has become quite clingy to me.  I would normally find this annoying from my other kids to be honest because it can be claustrophobic, but from Oliver it is welcome.  Usually he asks for Daddy when he needs consoling which is sweet.  But today when he told me that he would be sad if he had to leave me, I was overwhelmed with emotion.  Wow, he NEEDS me.  I’ve never felt needed emotionally by him.  It makes me feel so hopeful that he will be able to establish relationships in the future that are meaningful and empathetic.  Funny that this is my take away from this whole saga.  Man, I love that kid more and more each day.  Really and truly love him.

To finish this entry on a good note, it’s been a busy couple of days since returning from the hospital and we have been truly blessed that O is feeling better, singing along to ‘Boom Boom Pow’, and eating some food now and then.  What a huge relief.  I am trying not to push him as I know that it takes his body a bit longer to recover than J or E.  He spent a lot of time spacing out today.  God, it freaks me out when he does that.  He feels so far away.  I often have to look away with tears rolling down my face.  I cannot access him at that moment and there is no point trying.  I’m finding that it’s better to wait a minute and try and get his attention when I’m not dealing with my own feelings of grief.  Better to collect myself so that I can better captive his attention in a positive light when he is ready.

After talking with the health dept yesterday, it seems that they think that Emil had e.coli first and gave it to O.  Whether or not it originated with J when he got it at camp over the summer has yet to be connected.  Depends upon if they are the same strain or not.  I love how J and his buddies call that summer camp ‘Camp E.Coli’.  Gotta find humor in it, don’t we.  So, now both little kids are in quarantine as they aren’t allowed to return to school until they’ve both successfully produced two consecutive stool samples.  The fun never stops around here!  So, yes, if you’re wondering, that is 3/3 kids to have e.coli this summer.  People are going to start wondering if we’re concealing contaminated cattle on our property or if we just plain can’t keep house.

anger shmanger September 14, 2009

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I said in my last post, I will write about the Anger part. I don’t know if I’d call it anger or if I’d call it disappointment or if I would call it ineptness. I’ve told this part of our journey to some of you, so bear with me if this is repetitive. I need to recite this series of events to collaborate a letter that I have to write to the doctor’s clinic. I remain at odds with my feelings towards our family pediatrician, who we will refer to as Dr. N. I don’t feel mad at him as a person or any anger directed him.  (he is actually a great guy.  A guy that you would want to invite for dinner) I feel angry at the institution in which he works for. Spending 4-7 minutes with each patient is not acceptable. Yes, it is fine to diagnose a cold, or a flu in that amount of time, but when your patient is exhibiting abnormal signs, you need to address it AND take responsibility for your diagnosis. From the very start, I have been telling Dr. N that I suspect that O has trouble hearing. That O freaks out in small, crowded, loud places. That O has problems in social situations. That O spaces out. O had ((suspected)) encephalitis at age 2. That is a whole other disaster, but the way in which that was treated, I should have moved doctors at that point. It was the first week in July. Come to find out later that that is the worst time to go to the ER as it is when all of the new residents/interns start. So, basically, no one knows what to do and no one can follow protocol. Peter and I were in the ER with a screaming child for hours, completely exhausted. Finally, Dr. N. talked to the new attending and sent us home. They had ruled out Kawasaki syndrome as well as Type I diabetes from the blood tests. He told the attending that he had enough information from those tests to conclude that he had encephalitis. Even if it wasn’t that, he would still treat it the same way…tylenol and motrin. O screamed for 2 weeks straight. We were told by Dr. N that it has to ride itself out. We were never given any signs to look for. We were so besides ourselves listening to the constant screaming of our child in pain, that we would do ANYTHING to soothe him. I don’t know if this is how his demanding personality started to emerge or what, but if he asked for something, heck yeah, you had better believe we would get it for him…just stop screaming…please. Eventually the screaming stopped. Thank God for my parents and sister for stepping in to take care of J and relieve us, too. After the screaming subsided we were left with a child who went from talking in nearly complete paragraphs to uttering one word demands. It was shocking but I don’t honestly think that we weren’t that aware at the time as we were still reeling from watching our dear, sweet boy in such pain. My heart goes out to parents of children who endure such pain. I don’t know how you do it. God bless you. After this episode, O got very into movies. Mainly, Finding Nemo. He memorized every single line in the movie. He became obsessed with it. It’s not like he watched it alot after he was sick, but he seems to have a keen memory. During this next period, O was sick a lot with a variety of asthma/restricted airway-type sicknesses.  After many trips to the ER and being asked repeatedly to be referred out, finally he referred us to the local allergy/asthma clinic.  We had a full allergy panel ran there and continued on the drugs that Dr. N. put O on…Veramyst, Singulair, Flovent, and Albuterol.  Trying to get a resistant child to take any medicine, furthermore, this combination, was a lot.  We persisted and he indeed got fewer ear infections.  But he spaced out alot. Between sickness bouts, he would get better, but then he would retreat to his sick Oliver behavior.  Peter and I had alot of conflict giving that amount of medication to O.  Although it wasn’t immediate, after we moved into our new house when he was 3 1/2 yrs, we then stopped his meds.  Miraculously, his words started forming into sentences.  Indeed, he borrowed lines/vocabulary/sayings from various shows and movies to communicate.  He still does.  Regardless, he was able to now use those borrowed lines in context with the conversations that he joined in quite a clever manner.  He is a smart kid.

So, yes, I really do think that we could have had a much earlier diagnosis.  Not only that, but I feel that if our doctor/clinic was more capable of recognizing and accommodating children with the beginning signs of autism, that our journey until this point would have been easier and we could have gotten O into better therapies earlier.  I had to fight tooth and nail to get the appointments and referrals from Dr. N. to the neurology department.  He wrote in the referral that it was ‘parent requested’, not ‘doctor requested’.  That puzzles me.  Dr. N. did not understand why I demanded the referral out.  I told him that O is displaying a variety of abnormal behaviors.  That coupled with the encephalitis diagnosis, I would prefer to rule out any neurological problems from the start.  Dr. N. thinks that I’m a total hypochondriac mom.  I asked him at one point about ‘aspergers’.  He said that he gave O the autism screening at his 18 months check up and he passed it, so he doesn’t have it.  Uh…ok.  I had to beg and plead to get any sort of referral from him.  It has not been an easy path.  Trying to get the diagnosis was completely ‘parent/hypochondriac mom driven’.  In February, I decided to look into getting a diagnosis.  Was it Aspergers?  Lots of his symptoms seemed to fit that description.  Did he have auditory processing issues?  Was he having seizures (ie…the spacing out).  Was he just delayed?   Ugg…so many questions, yet so few answers and so much push back.  This part of it makes me angry.  This process could have been much smoother.  I need to draft a letter so that the next family going thru this process has a more streamline process to their diagnosis, whatever that might be.  With the help of our director at Oliver’s child care center, who is so amazingly resourceful and in the know, we were able to get in touch with the right people at The Seattle School District.  We had a several hour long evaluation with various specialists.   I honestly thought that maybe he was about 50-60% in social/emotional, but to get back an eval of 1-2%…I was jaw-dropping shocked and completely devastated.  They do not diagnosis there, but rather, they tell you what services they have to offer you based upon their assessments.  They offered him a 4 day/week 2 1/2 hour/afternoon pre-k program at View Ridge Elementary.  Perfect!  That’s where we hope that he’ll be attending Kindergarten.  They are absolutely wonderful there.  The head teacher there just plain understands him and is very aware of what occurs in her classroom.  I’m super impressed with them.  He’ll continue to go there beginning the week of Sept 21st.  All of the kids in that program have IEPs.  I think that it’s important for him to interact with a variety of different levels of function, so he’ll continue also at his childcare center.  I couldn’t take that away from him as they are so amazingly loving to him there.  He needs that in his life.  I know it’s tough for them because he’s not easy, but I hope that they are finding the connection with him rewarding.  It sure it rewarding from my end to see how bright they all are in his life.

All of this talk of ‘early-intervention’ is really true.  O has really progressed a great deal since we were able to get him into his IEP at View Ridge.  I wonder if he might even be further along if we weren’t able to catch some of the signs earlier.  The signs were very apparent.  It’s my job to get the word out to others to understand the early signs.  Why are the doctors not recognizing them??!!!  Something about that they have 4-7 minutes diagnosis a problem and I have been told that they have to see a patient a certain amount of times before referring out for anything?  Is that really true?  I don’t want to believe it, but I can’t help but think that it might actually be the case.

First week of school…what stage am I at now? September 10, 2009

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Our entire house is abuzz with the first week of school excitement. E started nursery school 2 days/week. J started 7th grade yesterday, and O started in a new classroom today, Pre-K. I put way more energy into getting E and J ready for their schools because O was just continuing on at the same school from last week, but in a different classroom. I’m coming to realize that as much anticipation as I put into getting O ready for an activity, it doesn’t matter. Either it’s a good day and it works for him, or it’s not a good day and he is upset. Today was not a good day for him. I’m finding that there is nothing that I can do to prepare myself for what might happen with him. He woke up complaining of stomach pain. In the little research I have done of autism, it seems that GI pain is quite common amongst autistic children. He often complains of upper tummy pain. So, he woke up off kilter and everything was a struggle. Breakfast, going to school, drop off, the whole notion of a new classroom. Eventually, one of the teachers was able to distract him to looking at bugs. I was in the Toddler Room with E who would not let me go. Literally grabbing onto my clothes. I don’t know why kids pulling on my clothes and stepping on my feet makes me feel enraged and claustrophobic at the same time! I managed to sneak out the back door. He cried for a minute, but then was okay. I left the center with no one crying. Major victory!!

I’m staring at the thick, colorful binder that Autism Speaks sent. The dreaded 100 Day Kit. I was so gung ho about it when I first got it and ripped it out of the package while still on the front porch. Now I can’t bear to open it, furthermore look at it. It’s so daunting. Where do I start. I know that the program is made for people like me who are overwhelmed by this whole process and to try and break it down and make it more manageable. They talk about the Stages Associated with Grieving on page 11. 1. Shock 2. Sadness or grief 3. Anger 4. Denial 5. Loneliness 6. Acceptance. I’m feeling that I’m wavering between number 3. Anger and number 4. Denial. I’ll explain the anger part in a sec. I’m definitely in Denial. Not Denial where I’m not in acceptance of the diagnosis. Yes, I accept that my child has autism. But I have denial in wanting to deal with this! My other two children are causing me so much Grief that I cannot Accept where I am at in the ‘lets pick up the phone and get started’ phase of this journey. So, I feel Angry because I would like to be able to deal better with this and I feel Guilty (that should be a stage in this, too!) because I haven’t been able to get a move on. Which as a result makes me feel Lonely because I have somewhat alienated my family members because I am Overwhelmed (this, too, should be a stage!) And, yes, this is all so Shocking. So, to recap, I am feeling ALL 6 stages of grieving, plus two extras! That might explain why I am so tired!

Seriously though…this week my goal is to gather contact info into one cohesive place. I might use that last page in the Autism Speaks binder to keep it all together! I so appreciate my friends and family who have shared with me people close to them who are going through similar journeys with their families. I love that those people are willing to reach out to me and give me guidance and share their experiences. I have so much to learn! I will be looking forward getting in touch with those people next week. This week, gather information. Next week, contact. That sounds good!