Good Morning...I think Benjamin has surpassed all previous records of staying out of the hospital, this time making it from July...until yesterday.  He's ok, but has had a rough week with fever and 'stomach bug' type symptoms. Thankfully no one else is sick but he just got dehydrated enough that our pediatrician felt he needed to be hospitalized yesterday.  I realized how bad he looked (and how worried they were) when they asked if I'd like them to call an ambulance to take him in.  I declined and we made a stop by home to pick up a few things.  Jamie cancelled her plans for the evening to come along and help (thank you again!) and spent the night here with Ben and I.  He's looking considerably better already and I'd like to get out of here before we get something we didn't come with!  We'll see how the day goes, but thanks for praying for him to recover and hopefully the rest of us to stay well for awhile here too.  Blessings to you all this Christmas season!

Hi Friends,

Our blog has been very quiet, usually an indication that things are quiet at the Julian home...relatively speaking. It's been a very low key week as 6 out of 7 of us caught a respiratory virus. Thankfully it hit hardest right after finishing the kids CYT shows, so the timing was just perfect. David was first and had some sore throat and cough last weekend, but thankfully was able to perform without a hitch and finished out CYT really strong. We're proud of him. I woke up not feeling well on Monday and Larry also began having symptoms. He's been unusually healthy, having not called in sick for over 6 months. It's been a real answer to prayer. Jamie, Anne and Benjamin developed varying degrees of symptoms as the week progressed but I hesitate to whine much...this is SO much better than the stomach flu, I'll take respiratory illnesses anytime. About the time I started feeling better, my voice began to disappear and I'm still alternating between croaking and squeaking, but feel fine. It bugs Krissy ("talk LOUD, Mom"). Probably bugs other people to listen to me too, but they are polite enough to not say so.

We enjoyed being with our friends, the Wrights, last night to celebrate David's friend Emily's 19th birthday. We were in their home last night and expect them here tonight after church.  We try and get together after Sat evening church often, have dinner and do our Face to Face (Bible Read Thru) together.  Their 3 kids are the same ages as our older 3 and they are all so close, it's great to share in reading the Word together.  It's been great to have more of the kids friends  joining them at church and they often invite them over too, afterwards.

We're expecting the Larry is scheduled to work Thanksgiving, but is first up y afor the night off if they are overstaffed. We don't have big plans...we'd like to go over to Mindy's in the evening if it works out, but for the most part, we'll enjoy hanging out together at home.  

Hope you all have a wonderful Thanksgiving.  I am so thankful in a fresh way for the joy there is in having a Savior and experiencing His grace to us. 

Love, Janelle

With our weather still feeling like early September, it's hard to believe that November is just around the corner. We are all fine here...5 kids in 4 schools (sounds easier than it is to keep track of who goes where, when) continues to keep me on my toes. I'm still so enjoying my twice daily drives to Damascus where Anne is enjoying her school year.Kristin is out of school today (the 3rd Friday in a row....what's that about????) but she's happy to be home and is really making some great progress. She's communicating better with some appropriate conversations. We're so happy to see her level of relationship skills. She reminded me over and over yesterday that it was Grandma's birthday. I've notice how she often expresses herself with "Sorry, Mom" when she knows she's done something she shouldn't have.  She very much loves being at home and will often opt for that over an outing. She continues to be especially attached to Jamie and I. She enjoyed helping me blow up balloons for David's 19th birthday on Wednesday.

Larry's mom is planning to come down the first weekend of November for the kid's fall shows, so she opted for the first time in many years, not to come for her birthday. Larry left here yesterday morning and after picking up his sister, headed north for Port Orchard where they celebrated her birthday with her.  He should be back this afternoon.  So glad they could do that!I opted to keep Benjamin home from school today too. He seems a little off, so prayers are appreciated. I didn't want to risk him sharing any illness with another child or the staff at school.

As you know, I left Doernbecher about 17 months ago after my boss (and wonderful friend) had her position eliminated. I felt that more would be expected from me and this was a time that I felt our family needed me more. The decision has given me a lot of peace and even though I usually only went up for part of one day a week, I'm not sure how I'd work that into our situation now. However we were concerned about my nursing license that needs renewal every 2 years. Finally, I got ahold of the State Board of Nursing and explained our situation with 2 special needs kids and Benjamin being 'medically involved'. They told me that caring for him totally qualifies for my requirement...in fact I can claim up to 16 hrs. per day for caring for him (and I only need to average 18 hrs/mo. to retain my RN license). That was such a relief. I didn't want to let it lapse, nor did I want to ever look at returning to school (refresher). But we just didn't see that it would work for me to go back to work right now. We are very thankful! It was funny....later the same week when our manager (for the programs thru the state that Benjamin and Krissy are a part of) was out, she asked if I'd be interested in working for them. She said I could basically pick up hrs while the kids are in school. It can be as small a caseload as I want...It's nursing delegation, meaning that I would visit other families with medically involved or medically fragile children and set up a care plan and assist in training their home care providers (catheters, vents, g-tubes, ostomy care, etc.) We'll see how that develops. I'm seeing/heeding the need to not say 'yes' to too many things. I was asked to speak to OHSU's medical students next week about having a child with chronic medical problems. I've done this 2 or 3 times before and I enjoy the opportunity...but it was Wednesday at 1pm....and it would take a lot of effort for me as our 2 little ones have early release on Wednesday. So I said, "call me again, but I think I better say no this time". That felt good :o)) Practice, Janelle, practice!

My mom is doing well and planning a trip to Montana in a couple weeks to celebrate my Aunt Margaret's 90th birthday. Dianne, Mindy and her daughter Aubrey are going too. I hate to miss it, but that's the weekend both of the shows open that our older kids are in. There's no way I can be gone.

We're beginning to work on some home projects that have needed doing for some time. We've lived here nearly 15 years, so things do wear out. It's fun to choose colors, carpet, etc....but wow....there are way too many options. Having been in Africa this summer, I think it really hits me in a fresh way. I'm hoping for more simplicity, less clutter in our home. And do you think we could keep the toys out of the living room and have it just be a calm peaceful place to go and 'be still'? Nah, I don't think so either. But maybe someday....Take care and catch us up on your news if we've not heard from you for a while...love, Janelle 

Sutures out....whew!

It's such a beautiful day!  I'm scheming to see how I can arrange getting out of town with (just) Larry next weekend.  It's his birthday and it would be so nice to get down to the beach together while it's still so beautiful out.  

I wish I could tell you what a breeze yesterday was...Krissy was scheduled up at Doernbecher to have her stitches removed, a very minor thing as we (all except Krissy) know.  However because she was so traumatized getting her finger put back together, we realized it was going to be a huge challenge to get near her.  I tried to talk her into it on Thursday night and she actually made it thru one of them coming out...but was just so anxious and it just seemed like she was unable to overcome that.  So, the back up plan was in place and we got her up to the hospital around 1pm.  We hoped she would breathe the gas thru the mask and that would be enough...but she hated it (kept saying 'take out the chocolate', which she's never liked)  He put a fruit flavor in it, but that didn't work either.  So the next try was an injection, which didn't work out any better.  She jerked her arm away and the needle came back out before delivery of the drug.  So....next came trying to convince her to drink Versed.....but by this time she was so upset, she knew anything we wanted her to do wasn't going to be pleasant.  We even tried getting her just to hold still and let the nurse take them out, but again, she couldn't.  So we had to hold her down while they gave her the shot of Ketamine....apparently a rather big dose. It was amazing.  Maybe 30 seconds later, her eyes were closing and we lifted her from the chair to the bed.  She was REALLY out.  Long after the sutures were gone, she was still deeply asleep and they felt they should start an IV just to have access.  Never anticipated that this was going to be so involved.  When she started to make some noises, they quickly pulled the IV, so she still doesn't know she ever had it which is nice.  In fact she's not talking about yesterday at all, so I'm hoping she really doesn't remember.    Jamie and I sort of wish we couldn't remember too.   The staff kept telling me when Jamie was out of earshot that they couldn't believe how wonderful she was with Krissy.  She loves her sister so much and boy does Krissy love Jamie!  We finally got Krissy upright, but she was so punchy...I don't know that I've seen someone act that inebriated without any alcohol....it had us all laughing. Unfortuately the medicine did make her sick to her stomach for several hours, so that made the ride home alittle more, uh stressful in Friday rush hour traffic.   She woke up feeling like herself so, we can close the book (i certainly hope) on this injury.  I think she's quite afraid of the bike at school now, which is fine by me.  

The older kids are in their first weekend of rehearsals for the fall CYT shows.  I'm sure we'll get thru it, but the forcast is quite involved/busy with them going in different directions and us having parental responsibilities on both sides of the river.  Their shows open the same weekend (same night, in fact).  David's last one, so I'm happy he got to be in the one he wanted. 

Hope it's beautiful where you are....definitely September is my favorite month :o)

Love Janelle

It's a beautiful September afternoon and yes, surprisingly calm, even at the Julian house.  The 3 older kids have left for CYT class, Larry is sleeping so it's just the 3 of us left hanging out together.  I love these beautiful fall days.  I think I've decided September is my favorite time of the year.

Anne is attending Damascus Christian High this year and this morning I was reflecting on how much I enjoy that beautiful drive out to the country.  I put some great music on and really am enjoying it.  Maybe in February it won't have quite the same effect on me, but for now, I'm a happy taxi driver.

Yesterday I looked out back and Benjamin was enjoying a maple leaf he had found.  In fact he was enjoying chewing on it.  I don't get it...he will not eat food, but yard debris?? Bring it on~ Apparently they aren't poisonous...I meant to look it up and forgot :o(

Krissy is now scheduled with the Pediatric Sedation Services at Doernbecher on Friday to have her stitches out.  Our local pediatrician's office didn't think it would be safe to try doing this in the clinic since she was so traumatized having them put in.  Seems so silly for a suture removal, but I agree...I think she would be too afraid to cooperate.   I may still try and talk her into it come Thursday night, but for now, we're scheduled.  They plan to give her a "Ketamine Dart"....an injection (not an IV) to sedate her.  Reminds me of what they do to capture wild animals.  Hmmmm, now that I mention it.....maybe it is the same thing?  I'll let you know how that all goes.

Our 3 kids auditioned for 2 different shows (Anne here in Portland, David and Jamie in Vancouver) so a busy fall awaits us...and that's just what we know about. This is David's last show as he will 'age out'...turns 19 in October.  

David and Jamie started fall term at Mt Hood CC yesterday.  David is in chemistry this term as well as continuing his studies in Criminal Justice (this time Juvenille Justice).  He's also taking a writing class.  Jamie is continuing her pre-nursing classes as well as working in another Spanish class and ballet with some friends.  

Larry developed an abscess tooth over the weekend and was noticably swollen up by Sunday evening.  He was able to see an emergency dentist yesterday and is now on antibiotics.  Hopefully he'll begin to feel better.  It really made him feel awful and was quite painful.  He continues to maintain his record of attendance at work...he's not called in sick for many months now...a real record for him and an answer to prayer.  We have good friends who faithfully pray for his health.

I'm staying busy.  I keep my eyes open for a very part time nurse position, but am really not sure that I can work it into our busy lives.  I love being at home with the family, being available for whoever needs me and baking cookies inbetween school runs.  God continues to provide for all of our needs.  

Hope you're well too and enjoying this beautiful fall weather.

Janelle

First day of school :o), 2nd day of school :o(((

Happy September....I think~After Krissy not ever feeling well on our trip to Disneyland, we were so happy to return home on Thursday evening. She must have stated in a loud, emotional voice about 30 times on the flight home "WE'RE GOIN' DOWN!". Hopefully no fearful flyers sitting nearby....I wasn't about to look around. We kept her home from school Friday and she just hung out at home on the weekend.Which made yesterday, her first day of school. It didn't actually start out very well....she was agitated from the get-go, then plopped down on the wet front grass and said she wasn't going. We did manage to talk her into getting onto the bus with her assistant, and the report from school was that she did pretty well.So...I was alittle perplexed when I saw the school phone number in my cell phone caller ID about 10 am this morning, when it rang. The teacher said Krissy had cut her finger quite badly on a bike at school, so I said I'd come down and have a look. Jamie came with me. Krissy was very shook up. They had paper towels wrapped around her finger to control the bleeding. I didn't even look at it. From the sounds of it, we needed to get to the doctor, so we went to the Emergency Room at Mt Hood. A very long story short, she had a nerve block, an xray, oral sedation, then an IV for IV sedation and finally we got her finger put back together...like 3 hrs of drama later. Poor little thing. Anyway, that girl can fight when she believes in something, let me tell you. At one point, both she and Jamie were crying.Nana and I are leaving shortly to take Krissy to Red Robin. This was a promised trip before today happened....Red is there, 6-8 pm, so hopefully he's ready for us. As always, keep us in your prayers. Larry is very thankful these 2 weeks happened after I returned from Uganda.

Janelle

Greetings from Disneyland...We flew down early Monday morning and we realized something was wrong with Krissy almost immediately when she announced that she wasn't going to Disneyland and wanted to go home.  WHATTTTTTTTTTTTTTTTT????  We've convinced her to go over briefly each day, but she's not been well since arriving and is happiest curled up in bed in our hotel room, playing with a toy or listening to music.  David's girlfriend Emily arrived with her Grandma this morning (her grandma's graduation present) and they will be here for 6 days.  When we realized we both had trips planned about the same time, we decided it would be fun to spend one day together.  Jamie stayed in the room with Krissy this morning while the 4 of us went on Indianna Jones and Splash Mountain (twice...no waiting!!!)... then they headed over with a picnic lunch and met us.  After seeing these 3 characters (it was great, standing in one line for all 3!) and having a PBJ sandwich,  Krissy wanted her hand stamped and 'go back to the hotel'.  So she and I are having a quiet afternoon, and I'm hoping we can convince her to go over to the "World of Color" tonight at California Adventure.

Appreciate prayers that she'll soon be feeling better.  You know she's not well when she's turning down Disneyland!

Hi Everyone....No, I haven't dropped off the face of the earth, but close :o)  More on that in a minute.  First, all is well here.  Krissy continues to enjoy her summer, with nearly daily community outings with our college student Missy, who has been with us full time this summer.  They have done a variety of things, much like the ACAP (Autistic Children's Activity Program) last summer.  There were some glitches with it this year, so we opted to use the funding instead to bring Missy on and do more of a customized ACAP program. It's been ideal since Krissy gets to do much of the planning/choosing of activities.  They swim,  go up the gorge, numerous trips skating (special Disney skate on Thursdays!) as well as the zoo, park, Chuck E. Cheese and Oak's Park.  This helps Krissy learn appropriate ways to interact and integrate into the community while learning appropriate behavior.  I can't believe she'll be 13 on Thursday!  We're celebrating with a trip to Disneyland next week, so she's counting down the days.  We originally hoped to have Larry and Anne with us this trip, but finances as well as circumstances just didn't work out. Larry really wanted to stay at home (what's that about?????....I told him how much fun it is to be at Disney with Krissy, but he look's abit skeptical :o))).  Anne starts at Damascus Christian next week, so she didn't want to miss the first days.  So it's just David, Jamie, Krissy and I this time...thankfully not driving...I need a little time after the June trip to take that on again, and Jet Blue made it hard to refuse with their low airfare.  We bought annual passes when we were there in June, so that all made it very do-able.  Down early Monday morning, back late on Thursday.  An added bonus is that David's girlfriend Emily will be down there on Wednesday with her Grandma, celebrating her graduation, so we'll spend part of the day Wednesday together enjoying the park.  Suzie, her grandmother worked in Special Ed for years, so she's quite happy about experiencing Disney with Krissy :o) 

Now, about my nearly falling off the face of the earth...not quite, but I've just returned from being part of a medical outreach to NE Uganda.  What a wonderful, life impacting trip this was for me.  Larry actually suggested that I go last winter and we began praying about it.  God was so good to also call my close friend Susan to participate, so our small team (2 MD's 2 RN's) began to prepare.  We were asked to begin a training program for Village Health workers, so our first 3 days out in the bush was primarily teaching some basic public health and first aid as well as addressing many questions about specific illnesses (never expected them to want to talk about chicken pox as much as they did).  Many local pastors who were also Karamojong were also with us...it's so wonderful how immediate the fellowship is when Christ is the common bond.   Because of both security concerns and the worst imaginable road conditions, our staging area was in a remote village instead of staying most of the time in the Peace villages as we planned.  We got our chance to live in a tent out in the larger one where we saw over 1000 patients in a couple of days.  We also traveled to a smaller peace village where there is no health center or regular care. Understandably there was a level of desperation there, to the point of them nearly pushing us over trying to get help.  Many stories of God being at work there and it was wonderful to have these days in a front row seat.  I returned to Portland on Sat evening.  Larry and the kids did great with not too many stories, thankfully!  

This was definitely a step out of my comfort zone...as I said before I left "I think I'm more of a Marriott girl".  My 'after statement" would only involve one word change.... "I KNOW I'm more of a Marriott girl".  It was certainly an opportunity for my faith and dependancy on the Lord to be stretched and I'm so thankful for that.

In case you wonder about the picture with the baby, no I didn't bring him home with me. Jesse is the 7 month old son of Anne, part of the local staff of the the organization we served with.  Once when he got fussy, it was amazing...I tied him on my back like his mom did and he was almost instantly asleep.  

Drop us a line when you can....Love, Janelle

Good Morning,

As you can see, Benjamin is comfortable here at home!  Since we came home Wednesday afternoon, he has done well overall.  He's sleeping and eating fine.  We were able to have the IV line removed before we left as it was determined that the oral antibiotic would be equally effective and he was impressing us with how much he was willing to drink.  All good!

You may notice in the picture that it looks like he's still in a hospital crib.  He is.  This is another recent blessing for us.  I was notified that a local medical company had several hospital cribs that had been donated by Shriners as they were remodeling and purchasing new ones. I called and asked if we could have our name put on one of them.  It is the nicest, newest hospital crib we've ever seen.  For a nominal fee they delivered it and even offered to set it up.  Benjamin was still in a regular crib, but he was going to be too big for it soon.  This crib is much bigger accommodating up to 5 ft and 300 lbs....which in Benjamin's case means it should work for a very long time! I've found his 2 oldest sisters in there at different times already, just relaxing :o) Guess there's something cozy about it :o)

I'm quickly recovering from my sleep debt...Larry was off the first 2 nights we were home, so that was so nice.  I had to get up early yesterday morning for a dental appt (extraction).  Not my favorite way to start the day.  Thankfully, even though I was very nervous at the time, it's been minimally painful and I don't think there's any swelling.  I hope it will all heal up fine.  I had broken a tooth near the gum line, so that was why it had to go.  Thankfully it was towards the back.  They offered an implant ($3000 co-pay) or a little fake tooth that clips to the one in front and behind ($30 co-pay).  I had to contemplate that for about 2 seconds.  It was custom made and ready yesterday, so that went right in...it's comfortable and not noticable, so I'm good to go with it I think.  I have so much dental appt. anxiety, I am very glad to have this experience behind me.

Have a wonderful weekend.  Thank you again for praying us thru this recent serious illness for Benjamin.  We're enjoying meals you provided and the practical ways you came alongside of us during this time.

Love, Janelle & all

Good Morning...It sounds like they are really going to let us go home today!  I'm so excited, especially for Benjamin who is very ready to be able to get down and walk and play (I won't let him on the floor up here!)  

Check out this video...I tried to put it on here last night, but I was unsuccessful.  Krissy got to go up to Sandy HS on Monday afternoon.  The music teacher let her play the drums and this is her after about 10 minutes.  She just looks so comfortable doing it doesn't she?

http://www.youtube.com/watch?v=OfeUjUv_U0s

Thanks for all your prayers this past week+...we now pray for the transition home and a season of good health for our little guy.

Warmly, Janelle

So much better

Hi again~Good news to report!  Benjamin just keeps getting better.  Yesterday I unhooked his oxygen hose to change his shirt and thought it might be interesting to see how he did off of it.  It wasn't like he was going to stop breathing...I just didn't know if his levels would begin to drop.  But they didn't!  I was quite sure he'd need it again overnight, and he has never needed it since.   This is evidence that the fluid has come out of his lungs.  I'll tell you, we've gone thru a number of packages of diapers...they gave him something to get rid of all this IV fluid they loaded him up with in the ICU. Just yesterday his wet diapers accounted for 3 liters alone.   He's gone from looking deceptively plump to seeing how thin he really is.

But today, we started him back on oral feeding...very diluted formula at first, but now he's up to 1/2 strength and is tolerating it fine.  I've asked to go home tomorrow.  The older surgeon we have is super conservative and my take is that if he thinks this was my idea, he won't like it.  We can do IV antibiotics at home as well as overnight fluids if he needs them, so a number of the staff is cheering us on.  I'll let you know what happens.  

We both had some good sleep last night thanks to IV Benadryl (Ben) and utter exhaustion (Mom), but seriously it was a real answer to your prayers.  I could use another one like it.  
It would be wonderful to have an uneventful night and continue a smooth transition to home tomorrow.   Let's pray to that end if God wills.

Love Janelle

Making progress...

We moved Benjamin about 6 pm last evening and he's continuing to progress...slowly, but heading the right direction.  He is still 'imbalanced' in terms of his electrolytes and fluid load...but we were happy to ditch the urinary catheter and the nose hose both before leaving ICU.

As you can see, he's sitting up and sort of goes between playing with some things in the crib, sitting in his stroller and sleeping.  He's really enjoyed the little personal DVD player that Child Life loaned to him. He's finding his familiar videos enjoyable in a new way, just 3 inches from his face.  

Larry traded places with me last night and I was brave enough to go home and sleep.  It was great.  David listened overnight for Kristin (on the monitor) so I didn't have anything  I needed to worry about, and I really slept deeply.  When I checked in with Larry early this morning, he said that they had also had a good night here.  I drove up about 9am and arrived with the surgeons outside his door, so that timing worked out well.  With Benjamin out of ICU, we no longer had pediatricians assigned to him, so I requested that. I think the surgeons are quite happy to do it all, but I'm more comfortable having others involved and particularly find the pediatricians are such great communicators and glad to talk over my concerns if I have them.

Thanks for your prayers 

Ease on down the road...or at least up the elevator

Good Morning,

It's a happy one here in Benjamin's room with a unanimous vote that he is ready to move from the ICU up to the step-down unit today.  He's looking a little more alert and even getting a little antsy with having to be either in his crib or stroller.  

I just heard that the nasal gastric tube (that uncomfortable nose hose) gets to go today too.  His IV nutrition was started last night, so there is no pressure for him to eat...he'll be able to just start slow when he gets ready and we'll know that he's now getting all the nutrition he needs while his system recovers.  

It was great to have our friends Steve & Michelle visit last evening.  While there haven't been smiles this week, we saw that little spark of recognition in Benjamin's eyes when he saw them. Steve hung out with Benjamin while Michelle and I went to our favorite Thai restaurant and picked up a wonderful take out meal that we brought back and enjoyed together.  Thanks for the treat you guys!

Jamie  spent the last couple of nights here with me...she and I found out we can both sleep on this 'meant for one' bed if we have to.  I was a bit restless, knowing I needed to stay tuned in to Benjamin and in ICU there is just always so much going on around the clock. 

Keep praying....We're thankful for how well he's doing.  Love, Janelle

Thankful

Today I'm thankful...

• Benjamin is showing steady improvement
• Although we have to stay in ICU one more day, it sounds like we really are going to get to move upstairs tomorrow
• for Larry who drove up here late last night and sat up with Benjamin who was restless, so I could have a few good hours of sleep
• for people who have stepped in and helped us this week, covering my responsibility for the carpool I never helped with for Jamie's CYT camp
• for my wonderful friends and family who send me notes of encouragement, offers of help and show up with bags of survival food and drink from Starbucks
• for our older kids who have all helped us out thru this
• for friends like Susan who always makes us her priority when we're in the hospital, bringing blankets, games and food to make things easier
• for the anticipation of Steve & Michelle's visit tonight and how happy that will make Benjamin (if Steve brings his guitar, it will be the icing on the cake!)
• for the cool comfort of this room we're in, while all of you are sweating it out in our heatwave here...did you draw the short straw or what???? :o)
• for Krissy having a great first day of summer school yesterday and for those who are helping her have a happy summer 
• for my mama who thinks to cut up cantaloupe and send it up to me and is always available to help out whenever/wherever

Hoping you have a good day and even if it's not what you hoped for, you can still count your blessings~ Love Janelle

ICU Day 3

Hello, 

Thank you for your prayers for Benjamin.  He is hardly recognizable with probably 6 or 7 lbs of excess fluid swelling him up, but it really seems that he's turned the corner.  He was on 12 liters of 100% oxygen during the night, now down to 5.  As you can see in the photo, he's still attached to way too many machines, but we're thankful to be in a place where these interventions are available.  Yesterday he developed a pleural effusion (fluid in his right lung) that interfered with his ability to oxygenate as well as he needed to.  They've told me that it's possible that he would need to be intubated but we're all hoping that won't be necessary.  Things are looking increasingly favorable several hours into the day.  We put him in his stroller just to have a change in position that would facilitate him breathing without so much work.  He's almost constantly sleeping, but that's a relief right now for all of us.  If he really turns around on this whole respiratory issue, we can potentially be transferred before long to the general pediatric floor for the duration of our stay.  I don't have any idea now how long we're looking at...we can do the IV antibiotics easily at home.  If he needs to begin eating (??tomorrow possibly) and build up that will take 2 or 3 days.  They are talking about starting IV nutrition too, so again, that could go home with us.  I need to not jump ahead, but just be thankful that he's better than yesterday and pray that God will continue to carry us thru the days ahead.  

I was telling Larry this morning how much I've appreciated our older kids thru this.  They have all been stretched in taking on added responsibility and it's been done willingly and without complaining and really understanding the seriousness of the situation.  Sometimes we hear about how self-absorbed the teen years are...I certainly had those moments I'm sure...but it's just been a gift this week to not have the stress of trying to make the kids get it.  They just have done whatever needs doing, even in the middle of the night.  Thanks Lord for encouraging us in this way...

High maintenance boy

Benjamin has picked up a lot of technology over the past 18 hrs.  He is hooked up or attached to so many things...he's got a PICC line (central IV line that goes from his upper arm to his heart), a foley cathether :o(, a nose tube, oxygen and 5 IV pumps at last count.  

I wish we knew what was going on with him.  Over the years, we've learned that when we hear "this is probably a virus" the translation is "we have no idea what's wrong".  As Anne said, "If this is a virus, I sure hope we don't all get it." Thankfully we got the surgeon back this morning that I have more confidence in than the guy last night who, over the years has consistently preferred to have his head in the sand.  His closing remark to me in answer to  my asking him some questions to try and make sense of it was "You can just let us worry about some of this stuff."  Grrrr.  Thems fighting words to a mama with 41 hrs since I last had sleep. Thankfully I heeded the still small voice to not verbalize further thoughts...  

Anne has been a real support to me here.  She ordered me to bed late last night (there's one right in the room) and said she would call me if anything came up.  I found out at 6am that she stayed awake all night beside his crib.  Her words "how could I tell you if anything happened if I was asleep?"  I sure appreciate her.  She's crashed now on the bed.  We've had about a dozen MD's thru this am already.  Just heard that his lab work for c.difficile toxin came back positive...a bacterial infection in the bowel...so at least we know part of what we're dealing with. He had this one other time when he was about 2 yrs. old.  They did say that he would not be moved from ICU today as he is requiring alot of care and interventions...more than they are prepared to deal with on the general pediatric floor.  

Thanks for keeping Benjamin in your prayers.  We're thankful to be in good hands here, but mostly thankful that we can rest with confidence in the hands of God.

Love, Janelle

Well...I sure haven't been very good about keeping up on news. Benjamin did well following surgery but his incision didn't hold together. That happened on the Sunday after surgery, so on Monday I took him in to the surgeons and they had a look. He also began a course of antibiotics and has done pretty well the last week.
Until yesterday....I could just tell he was 'off' yesterday morning. He was playing some, but seemed uncomfortable in a vague sort of way. By mid-afternoon he was asleep in the entryway and by 5 or so, he started vomiting. We felt so sorry for him, but couldn't land on anything that seemed to be the problem for sure. Larry went to work about 10:15 and I was contemplating sleeping on the sofa next to Benjamin's crib in the family room. But he was retching so frequently by about 1am, I thought "this isn't going to work". Anne helped me think thru the best strategy for dealing with this drama...Jamie had to be at Central Bible for a CYT carpool by 7:30 am (she's a counselor for them this summer). Anne suggested they take Krissy with them to drop Jamie off, and then Anne would come along to help me. I wasn't relishing trying to drive and 'be there' for Benjamin at the same time. So that's what we all did and it worked!
The ER staff was very responsive, probably moreso because Benjamin wasn't. He was really lethargic and seemed to repeatedly forget to breathe regularly. The xray showed a bowel obstruction and his tummy was getting visibly bigger. He was admitted to the Pediatric ICU just before 6am, so that's where we are. I can barely keep my eyes from crossing...just not used to 32 hr. blocks with no sleep. He had a number of random abnormal labs too, many of them due to his significant dehydration. We don't know why, but he had a fasting blood sugar of nearly 200, unheard of for him. The surgeon came and said if things were still significantly off with the mid-day lab results, he would take him for exploratory surgery this afternoon. Thankfully the xray looked a little better, things seem to be working AND his lab work seemed to be improving as well. They are still working up the apnea spells and now, also the fever that he's developed. He's on 2 IV antibiotics and the reason I'm out at the computer is that the IV team is putting in a PICC line. Thanks for your prayers. I'll try and update in the morning...I would expect we will be in the PICU for another day anyway. He's pretty lethargic, although less apnea spells this afternoon.
Love, janelle

Benjamin's Surgery

Thanks so much for praying for Benjamin today. His surgery was scheduled for 1:30 and by 2:30 a nurse was out in the waiting room telling us they were already finishing up. It was really the 'best case scenario' of the possibilities the surgeon described...He told me he wasn't sure if he was looking at one hour or if it would be several, just because he couldn't know what he was dealing with until he got in there. Thankfully it was much less complicated than it could have been and Benjamin is comfortable and already drinking. I asked before the surgery if I could possibly take him home tonight if he was doing well....and the doctor said, "I think that sounds very ambitious, but you could probably go tomorrow." Well... with his blessing, we're planning on leaving in about an hour. One more dose of IV pain medicine before they pull that...then a stop at the pharmacy on the way home to get some pain medicine for home if we need it. But he's looking good. We're so thankful! Who would have guessed we'd be back in our own bed/crib tonight?
Again thanks for your prayers, and keep them coming as Benjamin recovers.
Love,
Janelle

Home stretch...

Hello!

Benjamin and Krissy have just a day or two of school left.  I'll enjoy the not-so-early mornings for sure!  Krissy did get into ESY (extended school year) which will give her 2 mornings a week at her current school, just for the month of July.  I think it will be really good for her to have that mid-summer bridge and will help her manage the transition back into the full time routine in the fall. 

Benjamin doesn't ever get summer school, so we're working on some fun options for him.  We are very excited that Greg, his special ed teacher from a couple years ago that Benjamin LOVED has agreed to work for us part time this summer.  Greg plays the guitar and sings, and  I think probably reminds Benj some of Steve Ziegler (a very good thing!) so we're thankful that he'll get to enjoy this regularly this summer.

David and Jamie made it thru finals (David is very happy with his B in Calculus) and are enjoying school being out.  Anne is also relaxing before her summer session starts.  She won't do full time school, and I think has worked out a strategy where she'll work harder one week in order to have the next one off.  Whatever works!  She's been really helpful around home.

For those of you not in the Portland area, suffice it to say that we are treading water here....we thought summer was coming, but it was a false alarm I guess.  Maybe August??

As promised, here are a few more pictures from our trip.  Note a most unusual sighting of David talking (for an EXTENDED perioe, no less) on the cell phone.  He sure missed Emily but they enjoyed an occasional visit by phone.  The picture of the lake is a brief stop we made at Lake Shasta...it was late evening, but that didn't stop Jamie from wading while I had Krissy run laps around the car :o)

He went out to Emily's family's place to help plant their big garden yesterday (they live in the country), but I guess they decided to wait for a nice day in the next week or so to do that (you can always hope...)

Drop us a line when you can....Love Janelle

Just a short note to say we had a great trip and are all home safe (and very tired!).  I'm heading for bed, but will catch you up soon, along with some pictures.  Good night for now....

Good Morning from Anaheim...

In retrospect, it may not have been the best choice to hop in the car for a 1000 mile road trip the morning after Seussical closed....but we did it, arriving here yesterday surprisingly on schedule.  Krissy was/is so excited.  We had a beautiful trip thru S. Oregon.  When we decided it was time for ice cream, Jamie said she saw a sign about ice cream at the Wildlife Safari.  We knew we didn't have time/budget to take that in this trip, but we visited the 'Village', seeing a cheetah and monkeys.  Krissy and I enjoyed (or should I say 'endured') a camel ride....Krissy sat in front of the hump and me behind it.  We loved seeing Lake Shasta...Jamie even waded.  With these several fun stops, we didn't get in to Sacramento until close to 11:30pm.  Krissy was asleep around 12:30, then awake at 3:20 but I told her it was still night and she crashed until almost 5:30.  So we got up and were on the road by 6am.

We're off to California Adventure first thing this morning after spending the afternoon and evening in Disneyland yesterday, complete with fireworks.  This is David's first time to California adventure so we're excited to show him our favorites. 

More before long,

JDJK

Happy Birthday Jamie!!!  

Little sister Krissy's enthusiasm even got daddy up for an early birthday party this afternoon.  As soon as Krissy arrived home, she and I got ready to go and get balloons.  Of course we came home with more than I planned on.....Krissy isn't about to throw a party without hats, horns, etc. etc.  A little while ago, I forgot I had my party hat on when I answered the door for Benjamin's formula delivery....oh well....if he could ignore it, so could I.

Krissy wanted lots and lots of people at Jamie's party, but in reality we had about 15 minutes and just planned on this little celebration between them since Krissy will be in bed by the time kids get home from CYT classes tonight.  What a fun surprise when Aunt Mindy and cousins Aubrey and Trent came by with beautiful flowers for Jamie.  We talked them into staying to party with us.  We're planning on celebrating again later this evening with a mexican meal and ice cream cake. 

Jamie got 100% on her permit test, so that was a happy way to celebrate.  She even drove some back streets after we left DMV. She will be a good driver. It's been a good day!

Probably more pictures later.....Love Janelle 

Happy Birthday Jamie... Has it really been 17 years? Jamie brought us so much joy the day she was born...and that is still true today. A gift from God that continues to bless our family! 

We enjoyed looking thru her baby book this morning (see photo).  She and I are heading out to DMV soon for her to take the test for her permit...then out to lunch together.  Krissy and I are planning a party for her this afternoon before the 'big kids' go to CYT.  Krissy will be in bed by the time they get home...it's ok...she wouldn't like the Baskin Robbins mint chocolate chip ice cream cake we ordered anyway...Krissy's a strictly 'vanilla girl'. 

Benjamin still at home but am considering sending him back to school soon.  He's feeling fine...I'm just a little nervous.  He's one happy little boy these days.

Benjamin update/Seussical

Hi~ Benjamin is doing better.  He came home from the hospital late Thursday afternoon.  We were a little worried for awhile, but he seems to be feeling pretty good now and eating well too. He's on an antibiotic so hopefully that will help him stay well.

It's been pretty non-stop since then.  We took Krissy to see the final dress rehearsal of Seussical on Thursday evening.  She was so good and sat thru the whole thing without being disruptive. It's such a cute show and kept her interest up.  It helped that David, Jamie and Anne are on stage so much.  On Friday morning, I was let into the church at 9:15 after dropping Jamie off at Mt. Hood.  I needed to get the refreshment area set up and decorated.  By 11 or so, I was done and headed to Costco for the last minute shopping for the show.  Then back home to spend some time with the little kids before leaving for the theater again about 4 pm.  It was a really fun opening night with a party following.  Friends of ours offered to take our 3 kids home with them for the night (up to Washougal!) so that was a gift for me as I didn't have to stay until the party got over (at midnight).  Larry left about 10:30 for work, so I came home to a quiet house.  I had Saturday morning here, then back to Costco for more food before arriving at the church about 1:45.  The 3pm show went well and around 6, I left for Vancouver's show (they opened this weekend too).  Well both 205 and I-5 were parking lots...amazing traffic jams.  I got to the theater about 7:20 and then was so tired, it didn't matter how great the show was, I needed to get home.  So at intermission I left, with the Wrights willing to bring the 3 kids home later.  On Sundays when we have a show, they have a worship time for the kids and parents prior to call time.  It was really a good time together with some thought provoking words from scripture and a wonderful time of music. I continue to be so thankful for this group of friends we have thru CYT and the leadership that cares about these kids far beyond their acting or singing abilities.    Then round 3 of Seussical at 3pm, followed by pictures, followed by a short birthday celebration for Jamie in the green room.  Finally home about 7:30 and feel fine, but really ready to drop.  

Thanks for praying us thru last week....we so hope Benjamin can stay well now for awhile.  I can't believe we just have a week until Disneyland with Krissy.  The show closes Sunday and we plan to leave Monday morning.  She is extremely excited.  So are we.

Love Janelle 

Advocacy

Happy Wednesday....it's happier than Monday and Tuesday, anyway!  As you can see, Benjamin is sitting up some today after sleeping away much of the past 2 days.  He was rather determined to find a button on the IV pump that would provide music with the light show.  I have to watch that boy!

I had the nurse call me at 5:30 this morning and by 5:59 I was rolling out of the parking lot, heading for home to have some time with Krissy before school.  Benjamin was asleep when I left and I knew Larry would be over when he finished work.  I got home and I think the 'normal morning' routine was helpful for Krissy.  She's been pretty edgy and I think the change in routine with my being in the hospital, etc. tends to amplify her issues.  We had a good time...she got in the shower and got shampoo'd without a fuss.  She wanted to go to Chuck E Cheese (again) today, but she already got to go on Sunday.  I did tell her that Daddy would take her out for ice cream tonight, so she is happy to have that to look forward to.

On my way back up here, I dropped about 40 lbs of gummy bears off at my friend Teri's house to package up for the show Friday night (Thank you!!)  Such a relief to have that taken care of.  With Benjamin's illness, we weren't going to be doing any food repackaging at our house anyway, even though we wear gloves to do it.  I was in the car coming back when Larry called and said the pediatrician's had just arrived in Benj's room and wondered if I wanted him to put them on speaker phone.  Ah, the technology.  But I said "no"...it felt alittle overwhelming to try and do that and drive at the same time.  Good thing, because he told me when I got here that they suggested putting an NG tube down to feed him.  I said "did you tell them 'over my dead body'??"  This is NOT going to happen.  Benjamin always knows when he feels like eating and he'll do it when he's ready.  Then they ordered a GI consult and the MD hasn't been in yet, but I hear they want to do a barium study tomorrow at 9;30.  Probably not.  He acts like he has a stomach bug and he's starting to get better.  I really don't think forcing a bunch of barium down is going to improve the situation.  Anyway, you can pray for me as I have a calm (deep breath, Janelle) discussion with this doctor I've never met before, sometime this afternoon.  Advocating for Benjamin is a difficult role to be in sometimes...I want to be reasonable, but sometimes I think they just come up with things they can order so they feel like they're doing something.  I'm good giving him a little more time to come out of this.  But pray that I'll have wisdom and respond like I should, even if that means needing to be open to something that I don't like.  He's showing some real improvement today, so thanks for keeping the prayers going.  We have been so blessed by our CYT family...one of the moms (she has 4 kids in the show, so not a bunch of free time this week, to say the least) orgainized a 'meal drive' for our family...frozen meals for us to pull out in the days ahead.  One family sent a wonderful meal home with the kids last night.  I've been moved to tears by their love and care for us during this very busy time for them too.  Will let you know how things go.  Love, Janelle 

Well, our poor little boy is just really not doing very well yet.  It seems so odd that he had a bug last weekend, recovered so quickly, and then came down a week later with similar, but more severe symptoms.  They are being very thorough, doing blood work etc. to rule out more serious issues, but I think (and certainly pray) that we've just not turned that corner yet....and when we do, he'll make a good come back again.  He tries to sit up, then lays his head in my hand or on the crib rail and falls asleep.  He's definitely not himself.  

We're so thankful for the notes and calls of people praying and offering to help in different ways.  Anne and Larry got some things over to mom that we needed before Larry went to sleep for the day...and mom met me partway between home and the hospital so I wouldn't need to be gone from him for long.  I now have some of his favorite videos and the laptop, so I'm not having to try and type e-mails on my i-pod.  

I hope Benjamin and I can both get some good sleep tonight.  I just wrapped up in a blanket and napped in the wee hours this morning.....I'm hoping to get the pj's out tonight and do some serious sleeping.  

Thanks for your continued prayers for Benjamin.  More news soon...Janelle

Benjamin Blues

Krissy was absolutely ready to get up by 5 am today, so I'm rapidly fading this evening. Since I can't watch her and get Benjamin taken care of at the same time, I didn't realize that he was sick until I had gotten her on the bus.  He's been pretty sick all day...when he's awake he's vomiting or trying to....but has been pretty out of it all day, sleeping, hardly moving from one spot.  It was just a week ago today that we last came home from the hospital so it's hard to imagine that he got some other stomach bug already.  But something is sure wrong.  The older kids all had dress rehearsal (Sun-Thurs eves this week) so I called Larry about 5:15.  He got ready and took Benjamin up to the hospital while I stayed here with Krissy and got her to bed.  I'm planning to drive up once the kids get home.   I haven't heard anything since they checked in at the ER, but thank you for praying for him...that they'll be able to get an IV in the first time, that they can give him something to calm his tummy down.  I feel so sorry for him.  And then, as always, pray for us too.  We so hope we don't get whatever it is.   Larry has to work tonight and I'm already very tired.  It's a very fun but super busy week with the theater and opening night on Friday.  It would be great if this was just limited to him this time (please!) and his recovery was as amazingly fast as last week.  I'll post again, probably in the morning with an update.  Thanks!

It's another beautiful day in Gresham and for Benjamin, it was Special Olympics Day.  As you can see, he was far from a willing participant!  He apparently walked all the way around the track in the parade that opened the day.....and that was the end of his cooperation.  Mom and I went to watch for awhile.  I think the whole thing was really just too overwhelming for him. It was his turn to be in a race, which is the first photo you see.  As we walked him to the starting line, he just kept sitting down and then as everyone left him in the dust, and the crowd cheered them on, he plopped down and covered his ears.  For this he was awarded an aqua participant ribbon which he promptly began chewing on.  The next picture with Merrie his teacher, let us know what he really thought of the whole thing (like we had any doubts) but he managed his sweet smile for Merrie and Mama before I left.  

Good Morning,

It is a beautiful day here!  I am back to full speed and got the 2 little ones off to school singlehandedly this morning.  Jamie has been such a help with the early mornings the past few days.  Benjamin was so happy this morning. I took a  bunch of pictures of him with probably 85%  being of the top of his head :o)  He was happy to see his wheelchair, happy to go on the bus...

Jamie and I took both he and Krissy to the park yesterday and they had a great time.  Benjamin loves to walk down by the water...Jamie thought he wanted to get in.  Next time we'll take some duck food and see if he enjoys that.  He generally isn't very excited about animals, so it may scare him.

Mom and I are off for a walk on the Springwater Trail...it's too beautiful of a day to walk on the treadmill.

Thanks for your prayers for our family....no one else has gotten 'the bug' that took Benjamin and I out.  We're hoping we're safe!

Love,  Janelle

Role reversal?? Well, I guess I confirmed Benjamin's diagnosis of a viral stomach bug by waking up at 3 am this morning feeling bad.  The pediatrician said yesterday that there was an intense 18 hr. variety circulating....so I think I was supposed to get over it about 40 minutes ago.  At one point after coming downstairs to check on Benjamin, I was heading back to bed when I passed out, knocking Larry's nightstand and everything on it, over.  I don't know how long I was down on the floor, but had no idea that I hit the stand until I spotted it later on when I got up.  Nothing hurts, so I don't know what part of me hit it.  Of course Benjamin stayed home today, but Jamie got up early and got Krissy up and off to school by herself.  A little later, Anne was up and took great care of me and David chipped in by running an errand for me when he returned from the college.   Benjamin came and sat beside me more than once :o) I am feeling pretty ok as long as I stay down...not so good if I sit or stand.  

Please pray with us that Larry and the rest of the family will be spared this round.  Kids are heading into a very busy time in the days ahead with their play and Larry has missed so much work for illness this year.  Thanks and rest well.   Love Janelle

Yes, he's home in his own crib.  He was so happy to be home he immediately took off for the park with Jamie.  She said he enjoyed himself so much.  Who would've thought yesterday that he's be enjoying the park today?  

My favorite moment today was when the CNA came in to take his vital signs.  She was standing next to his crib and looked at me and smiled and said "He looks just like you!".  For once, I was lost for words, as this observation was rather unexpected, but  I did manage to squeak out "really"?  I smiled the rest of the day about that.... And I thought of how blessed I am to be this little guy's mom.  He is so sweet and people seem to be drawn to that without him ever being able to speak a word.  I love being his mom and it's just fine with me if we remind anyone of each other :o)

Except for Larry who hopes to remain awake, the rest of us hope to have an uneventful, very restful night!  May your sleep be sweet too.  Janelle

...Most definitely, a new little boy today!  He's started to take fluids by mouth and is laughing and playing.  Must be a record turn around time for him and we'll be happy to take it!  I'm hoping we'll both be sleeping in our own bed (or crib) tonight! Thanks for your prayers~Janelle

...just wanted you to know that Benjamin is resting peacefully here in the hospital this evening. The IV fluids have worked wonders and he seems to be feeling better. He's such a sweet little guy and doesn't seem afraid or worried about being here. Big sister kept him entertained and met with the doctors while I took a break and met my mom, sister and niece for dinner. We had some therapeutic laughter as we couldn't seem to get away from the (many) roving accordian players at the Rheinlander...they certainly seemed to have all hands on deck today! I'm going to be dreaming about 'my knapsack on my back'.

We went down the hall this evening and visited another cast member from the play (Seussical) that the kids are currently rehearsing for. Isaiah had an emergency appendectomy last evening and we had been asked to pray for him. He's not quite looking chipper, but he should be good to go for the play I bet.

More tomorrow and thanks for praying for our little guy. Janelle

Happy Mother's Day!

Happy Mama's Day!  

It's a beautiful weekend with lots of sunshine!  I was surprised early this morning by David when he came down from his room with a dozen beautiful white roses for me.  An hour I was surprised again when Larry arrived home from work with a dozen perfect pink roses.  Neither he or David knew of the other one's plan...I didn't mind a bit :o)  Just wish I was going to be home to enjoy them.....

Which brings me to the 'rain on my Mother's day parade'... Benjamin began showing signs of getting ill last night.  David and Jamie both slept downstairs to be within earshot of him....my backup ears, while I slept with the monitor next to my head.  I found I could hear retching very well.  I went to bed just after midnight, then up at 1am and 4am.  He looks pretty bad. He is losing alot of fluid, so I need to take him to the hospital soon.  Thanks for your prayers today for him.  I'll keep you posted but this looks like a virus type problem to us rather than a surgical issue (that's good news).

 Many of you will remember my good friend Debbie who lives in So. California...she is mom to 'the other Ben'. He has many similar issues and I got a text from her this morning.....from the ER at LA Children's where little Benjamin is right now, probably also being admitted today. Pray for him and their family today too, please.  Their home is much further from the hospital than ours is and Deb is facing a long Mother's Day away from her husband, mom and other 2 kids that she planned to be with today.

Love, Janelle