Friday, September 25, 2009


Happy Friday...Isn't this beautiful weather we're having?  I've decided I really love the fall. These beautiful sunny days that are warm enough, but still have that 'autumn' feeling in the breeze...it's good for the soul.  

There have been no further incidents of trying to kiss the afternoon bus driver...I was however called to the school the day after that happened because the principle said Krissy "wasn't safe to put on the bus".  I haven't yet heard all the details, but not only was she running, apparently she threw something(s) at the bus driver...Oh my!  This is the same guy she wanted to kiss yesterday????  So, now in one weeks time, I've had bonding ops with the school principle, assistant principle, and the school counselor, etc. etc. over her behavior/antics.  I'm good for this semester already.

I had a early morning meeting with her teacher today who informs me that Krissy now prefers to be called Kristin at school.  Go figure. 

Enjoy the attached photo of our angel-helper Molly as she greets Krissy and Kelly, the bus driver.

Monday, September 21, 2009

Kissy Krissy

So...it must be time for a little note about Krissy...after all this is supposed to be her blog.  She arrived home a little while ago and I went out to meet her bus.  The bus driver said "I'm going to have to report this..."  She apparently grabbed another student by the arm as he was leaving the bus and wouldn't let go...so the driver intervened.  Krissy then asked for a high 5 from Kelly, the driver, so he complied.  Then (here comes the reportable part) she asked to kiss him.  This apparently put him in panic mode.  He said "there's just no way...she can scream all she wants and I'm not doing that.  There are camera's on these buses" :o)  I told him she's innocent, she just likes to give everyone a kiss, but I'll write up a card of bus rules so she knows she can't be kissing the drivers.  Hmmmmm...just give her a few weeks and he'll be wishing for the days when the ride home was this easy.

Hey, you've all been waiting for a video of Krissy from Disneyland.  I'll see if I can figure this out without my IT neighbors help.  I call this one "Krissy loves Mickey, but what is under that big head of yours anyway???"

My First Day of School



WhoooHoooo...Benjamin made it back to school today and other than being tired he had a great day. Jamie had her first day at Mt Hood Community College, David went and located classrooms and he starts tomorrow.  Here's Benjamin with his new wheels...

I'm home, I'm home


Good Morning~

I wanted to let you know that we were able to come home yesterday.  We arrived home early afternoon and Benjamin was so happy to be able to be down on the floor playing with the things he's missed this week.  We had a small (in perspective) glitch with trying to fill his antibiotic prescription.  He was due for a dose at 4pm and we were told about 2pm that our local pharmacy didn't have a 'compounding pharmacist' so we couldn't get it there.  We would normally go to Lloyd Center Pharmacy for something specialized like this, but knew they wouldn't be open on Sunday afternoon.  With some perseverance, we located a Walgreens down on 39th that was able to do it.*  Unfortunately it took a very long time and Larry had Krissy with him, so that presented a new set of challenges...there just isn't THAT many interesting things to look at that Dad won't let you buy in Walgreens.  Finally they got out to the van where David was waiting, only to find out the battery was dead.  Larry called some friends from CYT and the dad came and rescued them.  They arrived home just a while before our Sunday evening fellowship group was due to arrive.  Thankfully, we now have his medicine!

Believe it or not, he's off to school this morning.  He just seems to have really felt well the past couple of days and I think will do better with some structure to his days.  Toys even get boring afterwhile.  I've included a photo of his arrival at home yesterday and will get one up later of his first day of school...I was so excited for him to go in his new wheelchair on the bus, I totally forgot the camera this morning!

Happy Monday~ Janelle

PS:  David is interested in going into Pharmacy....remind me to suggest that he get special certification in compounding medications as it appears there may be some added job security in this arena here in Portland

Saturday, September 19, 2009

Still here....


Hi,

I think we're getting close to being able to take Benjamin home....maybe tomorrow if things continue to go well.  He isn't himself, but is seeming less sick, so that may be as good as it gets while we're in the hospital.  The Dr (who looks about 17) just came by and she's encouraged by how well he's doing today.

A special treat this afternoon was Merrie, Benjamin's teacher coming for a visit.  Even though he hasn't made it to school this year yet, he definitely remembers her (he's had her for 3 years now I think)

Maybe our next post will be from home sweet home :o)

Friday, September 18, 2009

Good Evening,

Benjamin seems to be a bit up and down.  The nurse woke me up around 2:15 because he seemed to be uncomfortable.  He eventually settled, but then didn't want to eat this morning, which totally removed any thoughts of going home today from everyone's radar.  He resumed eating early afternoon, right before I had to leave to get David and Jamie to the college bookstore to get their textbooks for next week.  Molly came and sat with Benjamin, so that helped me just to know that someone who loves him was with him while we were away.  She continued to encourage him to eat and this afternoon seemed to be overall better than the start of the day.

 I'm not sure if I mentioned this, but I asked the orthopedic specialist on Monday if he would order a wheelchair for Benjamin for transportation to/from school.  I/we have carried him on and off the bus for years.  The steps are way too high for him, and quite honestly he doesn't necessarily WANT to go on the bus and so if we walk him out, he may either sit down (ground may be wet or dry, as is the case with his pants after he does this) or do his best to detour to sit in the car (one of his favorite things for some reason...we don't even have to start the car, just sit there).  If your child isn't in a wheelchair, the drivers aren't allowed to help you get them on/off.  Anyway, one of the blessings of being in the hospital is that they just got right on this request and sent physical therapists to the room as well as arranging for someone from the company to come and visit today.  He talked about what we needed and told me what he thought the best choice would be. It ends up that there is one that looks alot like an umbrella stroller, but is classified as a w/c.   Since Benjamin is able to walk, we really need something basic, but that is made to be secured into the bus.  That way, they use the w/c lift and he doesn't ever have to get out of the chair until his teacher takes him out in the classroom.  They are going to love this too.  The bad news was that while the chairs are available, because it has to go thru insurance checks/cross checks, it usually takes 3 or more months to get it approved (even with a necrotic hip joint).  The great news is that the guy said he has the identical chair that he will loan us free until ours arrives....he's bringing it to us in the morning. So, once Benjamin is able to go to school, we are READY!

A week or two ago, a contractor came and installed a bolt in the family room ceiling for a therapy swing that both Krissy and Benjamin will enjoy (and perhaps the other kids too)  It's very secure, bolted to a support beam and then he re-did the sheetrock and texturing, so it's really nice.  This is something else the program that Krissy and Benj are in provides, so I think one swing is on the way already.  They will also be sending a platform swing. Benjamin's services just began on Monday, so we have double insurance now which will sure help with this hospitalization. 

Hope you have a great weekend...I'll keep you posted!

Thursday, September 17, 2009

Birthday Pictures




I love the picture above. That's a smile that's currently reserved for sister Jamie when she sings funny songs for him.  It's been a full day.  Benjamin really seems to be on the road to recovery, so we're thankful for that. I met with the GI specialist tonight who is pleased with how well he is responding to the treatment.  It needs to continue for 2 full weeks, so hopefully we'll be able to complete it at home. 

 

Here's a picture of him with his friend Gabriel, who brought him the coolest motorcycle. Thanks Gabe!

The Birthday Boy

Happy Birthday Benjamin!

I can't believe my baby is 10 years old today...This morning it struck me how funny it seemed to be preparing bottles for him and looking at college textbooks to order for the older kids, all in the same morning.  It's a festive day in his room.  I came out from the shower and Jamie had hung streamers.  Child Life really did alot in providing gifts and decorations, even sending for a birthday cake.  When it came this afternoon, our nurse paged all the other nurses on the floor to come and sing to him (reminded me of Farrells when they called for the birthday singers...only thing was that was missing was the Portland Zoo screaming down the hallway on a stretcher....remember that , all you old folks like me out there???).  We had visitors and more are on their way.  Benjamin is improving. I'm waiting now for the gastroenterologist to come and visit and hopefully we'll get a little better idea of what the plan is for the days ahead.  It sure seems like we could potentially be on our way in another day or two, but no one is bringing it up much.  I think I've finally successfully loaded (thanks to Ruth's assistance!) a video here of Benjamin's doctors/pediatric team at rounds this morning...The Doctors are not in birthday suits...those are isolation gowns :o)

Wednesday, September 16, 2009

Crib Buddies...


Hi...There's really not much new this evening.  We had some good rest and a fairly uneventful day here in the hospital.  Benjamin has been given the thumbs up on trying to eat again and seems to be tolerating it fine.  No one is specifically discussing us leaving here at any particular point....I think they're alittle hesitant to discharge us after what happened last weekend.  We sure all thought he was ready to go.  Anyway, I'm guessing Friday might be the earliest, but of course it depends on how he's doing, lab tests that are pending, etc.  Jamie continues to be a help to  me here...Larry is off work with a cold, so he's not coming around up here at all.  Anne started high school (web academy) this week at home, so she's getting back into the routine.  We really like her teacher who made her first house call the other day for us to meet.  

On another (very sad) note, please remember the Patterson family in your prayers.  This is family who has been involved in Christian Youth Theater (CYT) much longer than us, but we have been in 3 shows with them in the past 2 years.  The dad, Gordon was struck and killed by a hit and run driver in Vancouver yesterday afternoon while riding his bike home from Hudson's Bay High School where he taught.  They have 2 kids who are now out of high school and one in the 8th or 9th grade.  Such a tragedy and sense of sadness for them right now.

More tomorrow I'm sure....

Tuesday, September 15, 2009

Feeling Better....


...especially when my sister sings to me!  I'm not sure what I'd to without Jamie here to help me. She's been such a trooper and in some ways I feel like we've had a role reversal at times.    This morning Jamie asked me if I would like to take a shower before the team arrived for rounds :o) Great idea, and I'm sure given time, I might have come up with it by myself.  But seriously, I so appreciate her stepping in and being willing to do whatever she can to help Benjamin and me both.  I am pretty tired and just having so many physicians and others involved at this time requires me to start over and over and over telling either about the last 3 weeks of his illness (best case scenario) or occasionally summarizing his life.

The gastroenterologist came today and what a blessing that was in several ways.  First, I admittedly have not felt very trustful of that department here because the people I dealt with early on in Benjamin's life, just didn't seem to know very much about Hirschsprungs Disease.... I just felt like they really should have been able to do better for Benjamin than they did.  But that was way back then and God has brought along just the right people in the interim to provide care.  The pediatricians felt they should bring the GI team in today and I am so impressed.  I appreciated how this Dr. talked about how God created our body (how often does that happen?) And then, he described a particular illness that hits people who have had many abdominal surgeries where there is an overgrowth of bacteria (basically an infectious process) in the small bowel.  He described very much what Benjamin has gone through in the past several weeks and is confident enough that this is what we're dealing with that he went ahead and began treatment.  That was the next "yikes" moment for me.  This particular drug was tried when Benjamin was much younger.  It immediately caused horrible vomiting.  It was tried a second time with the same result, so understandably (right?) I wasn't too anxious to go for round 3.  However, since this is the treatment of choice, and it had been a number of years, I agreed to giving it a try....and, NO problem at all this time.  Go figure.  SO....I know I feel a sense of relief tonight that it seems like we're getting some answers.  I'll feel even more relieved if I can get more than 45 minutes of sleep in a row tonight.  We had a very nice nurse last night, but I'm not sure why she felt she needed to wake me up starting at 12:20 (I'm just going to check him over") and then continued to disturb him (and me) thru the night.  She found everything "SO AWESOME" from a normal temperature to a good blood pressure reading :o)))  I think some people are just born to work nights....that explains that degree of 'happy', which I felt a growing contrast with as the very long night went on....Thanks for praying for rest for all tonight~

Monday, September 14, 2009

Settled in


t's now after 11pm and I think we're all ready to call it a night.  Jamie has been such a help with Benjamin.  He's definitely perked up, now on his 3rd fluid bolus and then will have fluids running thru the night as we hopefully catch up again.  Just thought you'd like to see some pictures from today...

Bump Bump Bump



Yes, that's what it feels like we're doing....Benjamin just can't seem to get better. He was re-admitted to Doernbecher today.  He is dehydrated again and has lost a significant amount of weight over the weekend.  We didn't want to let him get as sick as he was last week and thankfully his dehydration was not as severe.  He's getting IV fluids and they'll begin consulting with other specialties tomorrow to see if they can solve the mystery.  Thanks for your prayers.

I just heard from Krissy's teacher that she had brought in a canoe today and Krissy really enjoyed it.  They are starting a book about a canoe and a river....Krissy apparently serenaded them with "Row, row, row your boat".  Too bad Benjamin wasn't there to enjoy (?) it. 

More news when there is some~

Sunday, September 13, 2009

Benjamin Update


I wish I had great news for you.  We're still concerned about Benjamin.  Maybe we're just used to bringing him home from the hospital after surgery and seeing him get better so much quicker. He is just fussy, doesn't want to eat much, seems to be putting out more than is going in...I just don't know what to think.   Krissy had me up around 2am (happy, but very awake) and then Benj was fussy around 3:15.  A picnic snack and a little medicine got Krissy to sleep and some Motrin and a bottle settled Benjamin back down.

Tomorrow morning is his 6 month check up on his bum hip.  Last winter, they discovered that some bone  had died in his right hip joint.  This accounts for the hitch in his gait.  He is to have another xray and see the orthopedic specialist.  This is the appt where I am hoping to get the ball rolling on getting him a wheelchair for transportation to/from school.  I'm finally waving the white flag on being able to carry him on and off the bus all year...I'm afraid my back just won't tolerate it and with the 12 inch deep bus steps, I find I have to get a running start with him to even be able to get up them easily...and that's sort of scary in itself.  The thought crosses my mind "what if I miss??"

Tomorrow am, I may walk down the hall to pediatrics and see if we should get his labs repeated.  Thanks for continuing to pray that he'll get feeling better.  Sure hard to see him down for so long.

We're looking forward to my cousin Steve and his wife Julie's arrival this evening.  They flew from Sacramento to PDX last Tuesday and had a beautiful short vacation up in Victoria, B.C.  They will be with Mom and us until tomorrow evening when they are scheduled to return home.  For those of you who don't know, Julie has been diagnosed with cancer and is taking chemotherapy...we're so thankful that she seems to be responding well to it and that she and Steve are able to get away for some things they've wanted to do for a long time.

Friday, September 11, 2009

Progress!



Happy Friday~

It's been a wild day for me (Janelle) but overall, good.  Thanks to Larry trading places with me last evening, I was home before 10pm and had a great nights sleep.  Larry was very persistent in offering opportunity for Benjamin to drink and as of late this afternoon, we're moving quickly towards feeling comfortable going home this evening.  Part of me is a little reluctant to let a good IV go, but he seems to be feeling well and as you might be able to see in the little photo, he's sitting next to me on the sofa bed in our hospital room, playing with toys.  As timing goes, Benjamin did this visit really well.  Larry was off Wed/Thursday nights (the two we were here) and returns to work to start a 6 night stretch tonight.  Life is so much simpler when we're on the same side of town.  

This morning Anne's new teacher made a home visit and went over the program she will be in this year (web academy)  She will deliver a laptop to her next week and she'll be ready to start.   Following that one of the kids had a dr. appt and then a voice lesson before we swung back by home to pick up the other two and head for Vancouver where the CYT auditions are being held.  From there I was able to hop on I-5 and get back to Doernbecher in time to pull into the parking circle by the front door, hand the van off to Larry and come up to see Benjamin.  Larry hurried home to be there when Krissy arrived. 

Krissy had a great first week.  She told me they were having a birthday party for her today, which was in fact, the case.  Her class celebrated the September and the summer birthdays.  Teacher Jorie sent me pictures of her in cooking class today.  When I put her on the bus the 2nd day (Wed), she put her hand over the bus drivers mouth and said "no talk".  I was embarrassed as we've just met this nice older woman and I was hopeful of establishing a good rapport with her.  To that end, I said "Krissy, that's not polite...say 'good morning' to Miss Ellen".  Krissy immediately said "Good Morning Miss Ellen no talking".  Not sure if Miss Ellen tried to engage her in conversation the entire trip to school the previous day or why she felt like she needed to establish some bus rules of her own.  That girl.....

Thanks for checking in on us...hope you have a wonderful weekend.  I'm so excited to be able to take Benjamin home tonight!

Thursday, September 10, 2009

Thursday afternoon

Hi~Well, we're heading in the right direction here.  Benjamin has had alot of IV fluid and his labs are cruising back into normal ranges.  We found out that he doesn't have mono, one interesting idea they looked into.  They seem to like the theory that he has had some virus in his mouth and throat that caused him pain and unwillingness to eat and the initial sickness. As time went on, he became so off balance with his electrolytes (his ostomy is a real wild card when it comes to these illnesses and can get him into trouble quickly) that it became a cycle where he was just unable to take in adequate fluids.  It's reassuring to see him sitting up playing with toys in the crib this afternoon, though it's still going to take some coaxing to get him to drink.  My friend Erin and her little guy Gabe came for a visit yesterday.  She just sent me a note I thought you'd enjoy about his observations..."He insists that Benjamin was talking, and that we (you and me, I guess) just don't understand. I said yeah, that was probably true. Then he said, "But he THINKS, mama. Benjamin thinks about Jesus, and about us. And he can hear us, too. And Jesus can hear him." If only everyone could understand the world like a 4-year-old does!!

That cheered me up :o)....Jamie is here with me and has been a great support.  Anne and Larry came up and spent some time this afternoon here and Larry plans to do a sleep over with Benjamin tonight so I can get a little caught up.  We have Anne's new teacher coming to the house in the morning to meet us and orient us to the web academy that Anne plans to do this year.  Then it's off to a medical appointment, a voice lesson for Jamie and then to Vancouver where David is auditioning for a show.  Jamie plans to do a practice audition as well to help her in preparing for the late September auditions for the show she and Anne hope to be in this fall. 

Optomistically if Benjamin continues to do well, we're hopeful we might even be able to take him home tomorrow.  Thanks for keeping him and us in your prayers.  Krissy continues to be very happy (at least I think so....haven't heard yet how she did today) with school.  We really didn't expect her to mosey on into middle school without some transition pain...but we'll take it and hope it continues.

I'll update again when there is news~ 


 

Wednesday, September 9, 2009

Benjamin Tales

I realize we've shifted gears here, but if I change the name of the blog you won't know how to find us, so we'll agree...this is a multi-purpose blog :  Krissy & Benjamin Tales...

We're in the ER at Doernbecher now, just waiting to go to our room.  They had to call the PANDA team (transport team who are expert IV starters) to get a line in, and so Benjamin has what seems to be a good IV in his foot.  I think he'll stress over it less there than in his hand where he can see it.  We had a dificult night.  Anne sat with him off an on from midnight til 1:30...I was awakened at 3:15 and have pretty much been up since then.  After getting Krissy up and ready for school, Jamie helped me get Benjamin to the pediatrician again in Gresham.  The decision was immediate that he needed hospitalization, so arrangements were made and we're here.

Thanks for your prayers.  We're hoping this is all about him just being too fluid short and not that there is some serious underlying issue.  I'll update as I learn more. Jamie has just gone and found us a sandwich to share, so that should help us feel better soon too.  On our arrival we had 3 nurses and a doctor all in with him...not sure if they were that worried or more of a reflection of it being a slow day in the ER.  Whatever the case, we've had excellent kind care so far and we're thankful!

Krissy had a wonderful first day of school yesterday and last I heard, today was going well too.  The teacher is pleasantly surprised how well Krissy is seeming to transition.  This morning she was spontaneously saying "the best school ever", so I guess she's happy.  I was disappointed to have to cancel a long awaited appointment for her today with a specialist,but God will make sure we get there when we need to.  I had to see what could be taken off of the calendar today.  Larry worked all night but is sleeping today and is off tonight, so I may switch places with him and try and get some sleep. 

Benjamin's labs here today are so bad, they have been aggressively rehydrating him, so hopefully that IV will last awhile.  He's perking up just a bit now and watching a favorite video from his crib. More soon...

Monday, September 7, 2009

Not much news to report...Benjamin continues to do poorly.  I spoke with the pediatrician at length this morning, then took Benj over to our local hospital to have lab work done.  We returned home and soon the Dr. called to let us know that while not alarming, his labs are still not normal, and in some cases worse than last week.  He's mostly sleeping...I'm trying to offer fluids often, but he doesn't tend to be enthused about eating on a good day, so it's challenging.  Though tomorrow was to be his first day of school, we'll plan a visit to the Dr. instead and see if they can figure out what's causing this extended illness.  Though not the usual presentation, they'll check him for the H1N1 virus (Swine flu).  His weight loss is very concerning.  Thanks for praying for him.  Krissy continues to be one happy girl...she's been giggling alot today and seems to not have a care in the world.  I'm afraid she's started packing her bags already for her next trip to Disneyland, so we're trying to keep the luggage down to a large rubbermaid tub and then her various small cases and backpacks.  I feel like I'm fighting for property rights in our living room :o)  She starts school tomorrow, so I hope the 'happy' continues.  I'm been able to meet and visit some with her teacher and feel that this new classroom and staff will be a great fit for her.  I hope the transition will be non-traumatic for all!  We'll be praying for you teacher Jorie :o))

Saturday, September 5, 2009

I wanted to ask you to continue to pray for our little guy. Benjamin is just not feeling well still.  We are able to get fluids in, but he clearly isn't feeling well.  This is getting concerning as we're getting near the 2 week mark.  He's been to the doctor or hospital 3 times during this and we know he's sick, but don't know why.  Now of course, it's a holiday weekend, so our only option is the ER where I'm afraid we'll risk getting something we didn't have before.  We'll be watching him closely...this is sort of vague, but definitely not right and quite concerning for us, the longer it goes.

Thanks for your love & prayers,

Janelle

Friday, September 4, 2009

Benjamin Update


Happy Friday~ I know some of you are concerned and wondering how Benjamin is doing.  I'm so glad to report that he is doing remarkably better.  He's up to 1/2 strength formula now, still helping his electrolytes re-normalize with the pedialyte mixed in.  He isn't able to get thru the night, but either tylenol or a bottle will settle him back down.  Thanks for praying...he was a sick boy and is really thin, but we're seeing the sparkly look back in his eyes and he giggled over and over with me last night as we played with his musical workbench.

Krissy has done amazingly well transitioning from euphoria (Disneyland) to reality (home).  We brought her down slowly with a trip to Chuck E Cheese yesterday to celebrate (again) her birthday.  She was so much better than when we've gone in the past.

 A second good night's sleep is helping me feel like I'm getting back into the routine here as well.  She didn't settle down until after 2 am the last night we were in California and with long hot days on either side of that short night, I'm reminded I'm not as young as I used to be and it takes some time to recover from it all.  I really loved watching my girl have such a wonderful time and with the luxury of 5 days there, she was able to spend so much time greeting the characters (over and over and over) and going on her favorite rides (was it 10-14 times on that roller coaster in Toon Town our last day?)  In fact that particular ride got so familiar to her that as she left the starting gate on one lap, I saw her sckooch up to sitting on the back of the car with her feet where she was suppose to be sitting.  I don't know if any of you mothers have ever had a nightmare of your child climbing out of a moving roller coaster car, but let me tell you, it's not a whole lot better when it happens when you're awake.  Needless to say, I did NOT capture this on video as I was nearly ready to take off down the rails on foot...I was so afraid she might not be able to hang on with some of those tight turns.  She sailed triumphantly back into the station, I think feeling like she had accomplished something great.  Probably wondered why I quickly escorted her away for a serious talk.  Anyway...it was a great trip for her and I'm so glad we went.  Thanks again to Jenny and Michelle Ziegler for their help.

Wednesday, September 2, 2009

Home Sweet Home

Our girl celebrated her 12th birthday in style today, our last at Disneyland.  I'll have to tell you more, once I have some rest, but I wanted to update you this evening on Benjamin.  This morning while walking Krissy over to the park, Larry called and said he was quite concerned.  We decided that maybe we should have the surgery folks at Doernbecher look at him...thankfully we have a great nurse there who immediately invited Larry (who worked all night) to bring him up and get some labs done prior to seeing her and the doctor.  Benjamin's labs were very abnormal indicating a significant dehydration and possibly some infection somewhere.  They gave Larry the choice of trying to rehydrate him orally (every 15 minutes) at home or going to the ER for IV fluids.  Larry opted for the home method, so that's where we are tonight.  I am so thankful that I don't have to head for the hospital and hope and pray that we can get thru this illness at home.  He is down 5-7 lbs which is very significant (since he's only 52 or so to start with).  Thanks for continued prayers.  I'll catch you up some on our day with some pictures when I have gotten some rest (I was up until 2:15 this morning with Krissy, finally getting her to sleep by putting her in bed with me).  I really enjoyed seeing her have her 12th birthday in such a special place.

Thanks for your prayers,

Janelle

Tuesday, September 1, 2009

Pray for Benjamin


On another note....Larry says that Benjamin isn't doing well.  He was getting better when we left on Saturday, but Larry took him in on Monday and he's just still not doing well.  Larry weighed him today and he's lost a significant amount of weight.  Please pray for us and the Dr. to know what is going on and what's best.  I plan to call in the am when the office opens and see if we can get some lab work ordered to see if he needs to be hospitalized. Here's a picture of sister Jamie taking good care of him.

Thanks for your prayers...also for us as we fly home late afternoon....parting may not be such sweet sorrow for Krissy (and it's her BIRTHDAY!!)

Love, Janelle

Day 4




Happy September!  We had a nice day doing many of Krissy's favorite things.  She went on one roller coaster 6 or 7 times by herself and she went on the Matterhorn alone, so she was quite the big girl.  Today is Jenny's birthday, so she and Michelle had some time together.  I don't do very well (vertigo prone) on roller coasters, so I asked if she would go alone and she was fine with it.  She had numerous 'experiences' with Mickey, Minnie,, Goofy and even dancin' in the street at the parade with Geppeto.  He wasn't quite expecting one of Krissy's bear hugs, but he got one anyway.  On her last visit with Mickey, she made a surprise move of trying to pull his head off, which was captured on my video (watch for it on YouTube)...Yikes.  We had a talk and she confirms that she understands that this is not allowed in future visits with him.  The Disneyland staff has been extremely kind and understanding with her and their enjoyment of her antics seems very genuine. I would imagine there might be some sighs of relief when Thursday rolls around she doesn't show up.  Above are some photo highlights of our day...