Too much Christmas!

It's 6:30pm Christmas day. It's been full of all the normal Christmas day festivities as well as church. Kyle has enjoyed the day but is now done! He Kenneled himself to get away from it all. Not a bad idea! Hope each of you enjoyed your day!

Love, Spring.

Dimitri peek a boo!

Merlin

To: Crystal Kunz <morninrun@gmail.com>
Subject: Merlin

Ok so since he is a service dog there are a few limits he has that other dogs wouldn't.  

Wait to pet him until he sits in front of you.

If he jumps or licks you ignore him and move away.

If he nibbles (he is still a puppy) give him a toy.

Trade his toys for the kids toys if he gets them.

No People food

No rough housing. Long slow gentle strokes only.

Playing fetch is fine. Playing keep away or tug of war is not.

No chasing or being chased by him.

Redirect rather than say "no" (strikingly similar to parenting).

Don't use his working commands unless he is working. These words are: come, sit, down, say, heel, bed

Can use: leave it, drop it, off, let's go, Merlin and kisses sound ( instead of come)

Of course no hitting, kicking, yelling etc.

Work with him all day every day. Keep him hooked to you via a 15 foot rope at all times! 

I think that's it. ;) 

Spring

Fwd: Pre teen Lauren

Now she expects breakfast and she is mad because her jacket is Diderot and she can't wear it!  Unbelievable!   How can I not be doing something wrong?  My parents say "she's just like you  used to be dear". Well thats awful and totally guilt provoking.  Takes disappointment of self to a whole new level.  

I hope I never say  that to my kids even if it's true. 

Welcome to 'ground hog day'!  

Spring 

Begin forwarded message:

From: Spring Bean <springcbean@gmail.com>
Date: December 19, 2011 7:00:23 AM MST
To: Capture The Magic Blog <sabean1.climber@blogger.com>
Subject: Pre teen Lauren

It's not even 7 am and she has been rude to me for 10 minutes.  I've heard "MOM!!!" four times. She almost swore when she was telling me to "leave (her) alone". I got a "why didn't you wake me earlier? You know I don't get ready on time?" and a " why are you still up here?" (while I'm journaling this).  I told her "I don't appreciate being talked to like this and I don't want her to wake the other kids".  She said "I don't care!!!"   All this accompanied by the slamming of doors times 5, stomping as loud as she can and throwing things around as she gets ready. Then the precious "how about you go? And help!".

Now why did I want to be a mom and get this kind of treatment before 7 am?  Hey, it's your Education and future. I've done mine.  And I hate getting up before 7:30 am!  This doesn't help my burnout... I don't think I'll survive teenagers. :(

Spring

A day in the life.

It all started at 7 am. Get up and ready for church. Two boys, two girls, one dog, one me. Eight medicines, five procedures, potty breaks times five, church bag, cooler, music for descant, prayer and scriptures. Put hubby to bed from a night shift, kennel the dog leave for church. Arrived five minutes early.

Made it through sacrament meeting and performance. Off to nursery, home for singing time music I forgot. Get diet coke! Back to singing time. Made it through church. Go home, eat Christmas goodies. Drink diet coke. Unpack cooler, clean up breakfast, prep dinner, make lunch, potty times three again (including dog). Change clothes, Send girls out to play and take boys to bed. Kyle plays, Dimitri sleeps I wish for sleep. More diet coke.

Lauren calls me frantically. The dog fell in the swamp! Emergency bath! What's Kyle doing???? Lauren changes clothes again... Kennel dog, iPad for Kyle, start Lauren on homework head to choir.

Play flute, sing, chat, laugh. Head home. Check on the dog, Kyle and Lauren. Dimitri's still sleeping- score! Unpack, clean up, tube feed Kyle, change yesterday's laundry. Get ready for christmas cooking. Wake up hubby. More diet coke. Dinner didn't cook fast enough for him. He eats cereal. Off to meeting then work all night. Bye.

Dimitris awake. Kyle and Dimitri help cook, then Merlin tries to help. That's it! Bach to the kennel! Dimitri buckled in high chair, Kyle put in front of the tv! Alan calls after his meeting as he drives to work. I love my Bluetooth! Cooking fudge, carmels, peppermint fudge. Yum yum! Train dog, supervise boys and girls who resist their responsibilities. Run the dog. Comfort the dog.

Serve dinner that's finally ready. Cook more and more. Think it will never end. Wish I had a second adult helping me.
Cook, clean laugh try to stay upright?

Package, wash, straighten, sweep, wash, long for the good old pre-child days (long story). Take the dog outside. Breathe some fresh air. Supervise girls doing their responsibilities. Eat dinner, train dog, referee the boys play time.

Clean up dishes, sweep, laundry, dog training, connect with the girls. Prep for friend goodie plates. Plan aheaad for tomorrow. Text a couple peoplle while working elsewhere. Emailed a person or two call hubby to say good night.

Five more medications, three more procedures, pjs times 4-5. Snuggled Kyle, Dimitri, lauren, Sierra, and Merlin!
I'm wiped out.
No faking asleep while journaling. Good nritse

Spring

Adorable moments

I asked Sierra to collect all the ingredients for the Christmas treat cooking. After she finished I saw a diet Pepsi in the pile. I asked why that was there and she said "the recipe called for 'soda'"!

It tickled my funny bone! Merry Christmas!

Spring

Post op recovery period

Today I noticed that Mr Kyle had enough energy to do things other than play the iPad or watch tv most of the day. I hadn't noticed that his energy level was overly "abnormal" until today when he was undoubtedly back to his normal self! He helped pour crystal light and spilled it all over the counter. He kicked the dog, unmade my bed, played Memory on his own, drove a toy truck up and down the hall for a long time, helped set the table (and I had to unset it!), helped tube himself, took himself to the potty twice and was just generally back to normal.

It was nice to see him "return"! It's been two full months since the surgery in Cincinnati. I'm not concerned that this is too long of a recovery, it's actually pretty good for something that major I think. Once the neo-Malone is all healed we should be on our way!

One bummer is that he still has accidents. It's a bit less. Two to four instead of four to six. But when the goal outcome is to stay clean for 24 hours a time any accidents are disheartening. I'm trying to decide how long to "deal with it" before I "bug" the clinic again.

Guess I'll start the next medicine... Sigh.

I'm doing much better! It's been a tremendously hard few months for me, but I'm trying to be patient with myself too.

And I'm adapting. It's still overwhelming when my main job in life is to keep four kids, one dog and a hubby all cared for and their needs balanced. It's an incredible tall order, but I chose this and I'll see that it is done well.

Spring

Dec 2011, age 6

The reindeer food was made especially by Kyle this year! It's the first time ever he has wanted to do crafts anywhere. He loved all the activities! He commented about the colors, the eyes, the nose etc. he listened about the reindeer and paints and Santa. He wasn't scared of Santa and told him thank you. It all seems so simple for typical kids, but year after year when Kyle hasn't participated and has screamed when I try to have him join in. This year, He stayed with me (mostly) and looked at me for instruction. He participated fully in each activity! When he had reached his limits he let me know. "dad, go please!". And we left. What a great kid! It was beautiful to watch! What amazing progress he has made this year. What a victory we experienced tonight. What a precious gift from him, heaven, Katie, Maria, MJ and my patience. It truly takes a village is specialists to raise this kiddo. And look at what everyones hard Work has done. A special cherished boy unlocking his potential. This is beautiful to me. Is simple and easy to take for granted but yet so profound.

Dec 2011, age 6

Kyle painted these ornaments all by himself! He was so excited to paint. I'm so proud of him!

Dec 2011, age 6

Kyles first gingerbread house. I'm so proud of him! And he wrote his name! (the squiggles)

Kyle and Merlin.

We are loving Merlin! He is gentle and smart. Our trainer is proud of him and so are we! He is 16 weeks old now and we all enjoy him so much!

Merlin-isms

Seriously I have to wait?

Kyle

Going home now. The track is open with a tube in place that will stay there another month. Yippee. Kyle tolerated it well. I've had better days but heck it was a great date with my hubby. Taking our child to yet another hospital! We got a milkshake on the way home. Ugh!

Spring

Fwd: Kyle Bean 8-6-05

Spring 

Begin forwarded message:

From: Spring Bean <springcbean@gmail.com>
Date: November 22, 2011 5:38:39 PM MST
To: Marc Levitt <Marc.Levitt@cchmc.org>
Cc: Cathy Bauer <Cathy.Bauer@cchmc.org>
Subject: Re: Kyle Bean 8-6-05

Here is the update on Kyle. The radiologist tried to pass a 5 French with no wire first and couldn't pass it. Then tried and passed a 5 French foley with a wire and got access. Then was able to pass the 8 French argyle tube. We have the 8 French tube in place now.  

I'm glad its in. The radiologist made it seem easy, but I couldn't get it earlier. Kyle tolerated it well. Heading home for a flush now. And I'm breathing again!  

Just to be sure, at this point a surgical revision isn't needed right? (Alan says no). We leave the tube in for a month then start again with passing it daily, right?  

I've asked the hospital to send the report to you. Thanks again for all your support today. 

Spring 

On Nov 22, 2011, at 2:34 PM, "Marc Levitt" <Marc.Levitt@cchmc.org> wrote:

I suggest leaving it in for one month.  And yes, at the one month point the interventional radiologist should recheck the tract with radiologic contrast.  After they insert the tube, the tube can be used.  Happy to see a copy of the study but not vital.

 

Marc A. Levitt, M.D.
Colorectal Center for Children
Cincinnati Children's Hospital Medical Center
Pediatric Surgery, 3333 Burnet Avenue, ML 2023
Cincinnati, Ohio 45229
tel:  513-636-3240  fax: 513-636-3248
email: marc.levitt@cchmc.org
www.cincinnatichildrens.org/colorectal>>> Spring Bean <springcbean@gmail.com> 11/22/2011 4:26 PM >>>
How long will it stay in?  Will we do a repeat fistula gram to determine removal?  I assume it will be safe to use for flushes right away.  Do you want a copy of the study? 

Thanks,

Alan



On Nov 22, 2011, at 1:43 PM, "Marc Levitt" <Marc.Levitt@cchmc.org> wrote:

> Time with the tube in should solve it
>
>
> Marc A. Levitt, M.D.
> Colorectal Center for Children
> Cincinnati Children's Hospital Medical Center
> Pediatric Surgery, 3333 Burnet Avenue, ML 2023
> Cincinnati, Ohio 45229
> tel:  513-636-3240  fax: 513-636-3248
> email: marc.levitt@cchmc.org
> www.cincinnatichildrens.org/colorectal
>>>> Spring Bean <springcbean@gmail.com> 11/22/11 3:11 PM >>>
> We'll get it done.  Will this need to be surgically corrected or will it just need time?
>
> Alan
>
>
>
> On Nov 22, 2011, at 1:00 PM, "Marc Levitt" <Marc.Levitt@cchmc.org> wrote:
>
>> Yes, that is exactly what I would want to happen. They can rescue the tract and get a tube across it.
>>
>>
>> Marc A. Levitt, M.D.
>> Colorectal Center for Children
>> Cincinnati Children's Hospital Medical Center
>> Pediatric Surgery, 3333 Burnet Avenue, ML 2023
>> Cincinnati, Ohio 45229
>> tel:  513-636-3240  fax: 513-636-3248
>> email: marc.levitt@cchmc.org
>> www.cincinnatichildrens.org/colorectal>>> Spring Bean <springcbean@gmail.com> 11/22/2011 2:52 PM >>>
>> This is Alan now. I just spoke with radiology here and they could offer a fistulagram and find where the narrowing has occurred. Then they could pass a tube that we could suture in to temporize the problem. Depending on what they find, I suppose would determine the next course of action. Do you want us to proceed with that?
>>
>> Thanks,
>> Alan
>>
>> On Tue, Nov 22, 2011 at 12:48 PM, Spring Bean <springcbean@gmail.com> wrote:
>> Ok, it typically home care that orders these? How quickly do we need this? Alan said that when stomas like this close they need to be opened within 24 hours to be used again. Should we try to find an interventional radiologist here still? Our home care for malone supplies is Cincinnati Childrens, but I don't know when they would be able to get it to us. Locally, Norco is the home care company that carries these supplies I don't have an account with them, but their number is (208)898-0202
>>
>> SPring
>>
>>
>> On Tue, Nov 22, 2011 at 12:37 PM, Cathy Bauer <Cathy.Bauer@cchmc.org> wrote:
>> Yes.
>> Did you try both catheters?
>> Kim can send an order for the coude catheter. She'll need to know where to send it or it can be ordered online
>> Cathy
>>
>>>>> Spring Bean <springcbean@gmail.com> 11/22/2011 2:34 PM >>>
>> I don't have a coude catheter. I have an 8 French urinary cath with a blue top port and I have the green argyle emergency tube with the green cap.
>>
>> Are we all on the same email now?
>>
>> Spring
>>
>>
>>
>> On Nov 22, 2011, at 11:49 AM, Spring Bean <springcbean@gmail.com> wrote:
>>
>>> I can't pass the tube for the flush. I keep hitting a block. I've tried spinning it while pushing, every angle, having Kyle in sitting, standing and laying, and pushing water through the tube while trying to insert. I can't get it in. My husband (ER doc) has also tried and can't get it in either.
>>>
>>> I've got golightly called in to the pharmacy and I've got a call in to our pediatrician regarding an interventional radiologist. Just waiting for more instruction or info.
>>>
>>> Spring
>>>
>>>
>>>
>>> On Nov 22, 2011, at 11:43 AM, "Marc Levitt" <Marc.Levitt@cchmc.org> wrote:
>>>
>>>> What is the Malone concern?
>>>>
>>>> Marc A. Levitt, M.D.
>>>> Colorectal Center for Children
>>>> Cincinnati Children's Hospital Medical Center
>>>> Pediatric Surgery, 3333 Burnet Avenue, ML 2023
>>>> Cincinnati, Ohio 45229
>>>> tel: 513-636-3240 fax: 513-636-3248
>>>> email: marc.levitt@cchmc.org
>>>> www.cincinnatichildrens.org/colorectal>>> Cathy Bauer 11/22/2011 12:34 PM >>>
>>>> If you'd like we could try Citrucel/pectin, one Tablespoon with food/feedings.
>>>> If that doesn't help and he's emptying well we could start a low dose of Imodium. It sounds like this is going to be very diet related though and it will make it difficult to be perfect.
>>>> I passed on your concerns about the malone to Dr Levitt
>>>> Cathy
>>>>
>>>>
>>>>>>> Spring Bean <springcbean@gmail.com> 11/22/2011 12:25 PM >>>
>>>> Hi Cathy and Dr Levitt,
>>>>
>>>> We arrived home and Kyle started eating and also started having many accidents. Bummer! He has a head cold, but I can't tell that he has a sore tummy from a virus or anything out of the ordinary except the increased intake. I know he has exceeded his carb limits since we got home. I am limiting him more vigilantly now. Also, I suspect the Sucraid (the enzyme for sucrose) is expired so I have ordered another bottle. Once I rule both of these out, I think we can get a better assessment of what his bowels are doing without having complicated factors. If you or Dr Levitt dont agree with my assessment, then please let me know that as well. We got an xray this morning and I'm going to send it to you via email shortly.
>>>>
>>>> Thursday 11-17-11, 15 hours after the morning flush Kyle has a small smear. CARBS: this day totaled 15 grams ACCIDENTS: 15 hours later, small smear. 27.5 hours later, small stool, solid
>>>> Friday 11-18-11 400 cc flush at 8:30 am MST (27.5 hours after Thursday's flush due to travel) CARBS: this day totaled 77 grams (exceeded his 45 gram limit for the day.) ACCIDENTS: 5 hours later. small smear, 10 hours later, medium smear, 10.5 hours later, med liquid stool, 22 hours later, large liquid
>>>> Saturday 11-19-11 400 cc flush at 8:30 am. CARBS: 40 grams carb. ACCIDENTS 7 hours later, small stool, 9 hours later large liquid, 22.5 hours later, small solid - Kyle was cramping and hurting, so started the flush for Sunday.
>>>> Sunday 11-20-11 400 cc flush at 7 am (22.5 hours later) CARBS: 25 grams carb. ACCIDENTS: 4.5 hours later, small formed. 6.5 hours later, smear small, 25 hours later, small stool.
>>>> Monday 11-12-11 400 cc flush at 8 am (25 hours later)
>>>>
>>>> Please advise regarding information needed with relation to carbohydrate intake and stool patterns. For 11-19-11 and 11-19-11 I saw defininate patterns of carb intake, followed by stool. Some of the carb was complex carbohdyrates which is unaffected by the enzyme Sucraid, and some of the carbs was simple sugars which is aided by the Sucraid. Both types of carb produced stool. Therefore I am replacing the enzyme Sucraid and restricting the complex carbs. He doesn't like it and it doesn't give him many options. Eventually we need to decide how to handle it when he eats excessive carbs because it is almost impossible to keep him (or anyone) less than 45 grams of carb a day without being able to use proteins or fresh veggies (based on the constipating diet needed for bowel management). Alan suggested that on those days some pectin or immodium might be what we have to use to keep him clean. However, two problems I see...Should we medicate him for this or just restrict him? Second, his intake is totally unpredictable and after he eats above his limit may be too late to medicate him. Please advise.
>>>>
>>>> Thank you!
>>>>
>>>> Spring
>>
>>
>

November 22, 2011

Kyles neo-malone closed off today. The track must be reopened and then another tube will be sutured in place for another month... Wonderful.

Hospital

> Just a quick note to say we are taking Kyle to the hospital for emergency radiologic intervention because his newly created neo-Malone has closed.
> Wish you were here.
>
> Spring
>
>

Springs email has changed!!!!

Hello everyone,
Important news about my email! I have changed and will no longer be reachable on my Comcast email. My NEW email is springcbean@gmail.com

I still want to get all your wonderful emails, so please update your address books! :)

Spring

Cincinnati trip 3, day 7. Total time in Ohio 25 days so far

Here is the latest update.
Our family is half in Ohio and half in Idaho. Spring, Kyle and Dimitri are in a lonely hotel room far from home. Alan, Lauren and Sierra are in a lonely empty house at home. Sadly it's been an all too familliar experience for us all.

We are doing what has to be done and trying not to get caught on any of the lonely, unfair, angry, hurt, homesick, and irritated feelings that keep sweeping over us. That's what it comes down to for everyone though at the end of the day. I guess some have to not get caught by the giddy, crazy ideas that they get too anyway. It's hard and lonely. We hope this is almost done. We are grateful for the continued support of family and friends. We appreciate you staying by our sides even though these medical challenges seem to go on and on.

Alan left this morning at 7:00 am. Dimitri has talked about dad going to his airplane all day! He has talked about being "all done" with the hotel and Kyles doctors. He has talked about lauren and Sierra being gone " on the school bus" but he means he wonders where they are he misses them!

Kyle misses dad too. He was awake when dad left. Alan told him he had to leave and Kyle shook his head "no". He has been good today but he has asked for a lot of comfort things then refuses them. He isn't good at expressing his thoughts but he is confused at his homesickness too.

I'm really lonely but hanging on. I've not posted much so how could people know what is happening but now I'm sending an update out. The hardest part for me is giving myself a break. This skill has never been one of my strengths. When I had my children the doctors always emphasised how I have to take care of myself. Kyles cardiologist emphasised how we should take care if ourselves through that process too. This has been less life threatening but far more extensive, time consuming and draining than that yet these doctors don't talk about this as if they ignore it it will go away. I sure have met my match this time.

Alan is pulled in so many directions - work, me, the girls, the boys. He is pretty overwhelmed. Dons death still haunts him. His work schedule is strenuous. He wants to take a real vacation- next week!

Lauren and Sierra- they are patiently enduring this as well. They often let me see their biggest feelings (which is normal) and they wish this was behind us. But they are enjoying time with Grandparents and friends. This has made them grow up early and while that's not all bad and they may be grateful later for it, right now it is hard.

The daily time commitment each day is down to maintaince level - one hour a day for the rest of our lives. That's on top of all the other daily care Kyle requires. True it's better than two hours a day, but how can you sugar coat poo? It's a huge devastating new reality - Kyle will never be fecally continent. The silver lining for all you optimists- we can artificially keep him socially acceptable and eventually get him in underware not diapers through strict adherence to a bowel management program. Don't misunderstand me, this is better than chronic soiling, but I'd say it's more of a Brown lining than a silver one.

Kyle doesn't hurt now. The tube stitched in place is gone and his incisions have healed nicely. The fine tuning of his daily enemas is slow and time consuming. Each day his X-ray is clear of stool but each day he has accidents. So each day we trek back to the hospital for more X-rays and wait.

It's possible we can leave tomorrow. It's also possible we might have to stay till Friday or Saturday. We just have to wait and see. Many of you know - I love to wait.;) I definitely recommend all the control freaks in the world have a kid with a few of Kyles issues. It will cure you!

So while required to be in Cincinnati what have we done? We have gone swimming, worked out, gone to the aquarium, the Freedom center, the Harriet Beechers Stowe house, the Childrens museum, read books, watched TV and enjoyed a visit with Alans sister Nicole and her family.

Could things be worse? Yep!. Is it my favorite trip ever? Nope! Am I afraid of what will happen to my already taxed reserves once I get home? You bet! Do I want to go home and have the family back together? Indeed!

As a wise old dragon said, "there are no easy paths.".

Spring

Cincinnati trip 3, day 5

We got up early do we could be done with our two hour "work" by 8:30 and be at the hospital by 9:00. We got an X-ray and then checked in with the surgeons.  About 4:00 pm we got a call back with the days adjustment and that's all we did. We have to wait till tomorrow to make any changes, then wait and observe for another 24 hours.  This is a very slow moving time consuming process. Seems less rewarding to be hanging out far from home than being in the hospital or being on vacation. Probably because of the strain on the family as a whole being apart. All in all it's very stressful and It's  pretty disruptive to be here then home then here then home. Hard to keep the momentum of daily living like this. 

Anyway the boys had fun at the children's museum today. Dimitri is lacking more sleep and talking non-stop which is driving us slightly crazy. Alan and I are in each others nerves a bit.  I checked on Merlin the dog and he is fine. I'll call the girls later but I think they are fine too. 

Spring 

Cincinnati trip 3, day 4

It 11:30 am and I've tubed Kyle, flushed Kyle, gotten breakfast for all, read scriptures, exercised, cleaned the hotel potty and done laundry. Then I tubed Kyle again and showered. Whew! I'm tired. And guess what? This is the daily drill for the rest of my life! Wana trade?

Yesterday the flush didn't go smoothly. It leaked all over Kyle an the floor. So we had to start over. Today thankfully was smoother. After a rough start to the day I worked out and then we went to the Newport Aquarium with Nicole and her family. It was a nice time. We spent all day there and it was 8:30 when we got home. I went to sleep with the boys. Where is my stamina? Crazy!!!

Spring

Cincinnati trip 3, day 2

Well I'm already behind. The alarm went off at 5:30 EST which is 3:30 MTN. I just hate getting up before 7 am body time regardless of time zone. So I feel irritable already. And, three boys are sleeping while I get everything ready. With The young ones this is better, but the old one...well it's typical.

Heading off to start our week of poo.

Now it's over 12 hours later and the boys are going to bed and I'm recounting the rest of the day.

We arrived at the hospital at 8:00 am and sat through an hour and a half of lecture. It was insightful on the challenges preventing more research on incontinence but as for teaching us anything useful for taking care of Kyle, well let's just say we are more informed than most... We learned more about bowels than most people deem socially polite. It's very interesting to learn about how prevalent bowel challenges are. There is very little support for research in bowel treatment because it's not a glamorous problem like heart defects or Siamese twins. I'm disappointed in society as a whole because of this discrimination, but I'm not suprised.

Anyway, I picked out a few tidbits and then we were off to x-ray and a clinic visit. 8 hours later we were done. We had eaten, taken several potty breaks, got Kyles neo-Malone tube removed, learned to cath him, Kyle had a rectal exam done, a flu shot and a g-tube change. We got back to the hotel and I sent the boys away and laid down. I didnt sleep - darn, but I rested and it was nice. Then I worked out and dined at Alan's favorite restaurant - Bob Evans.

Now we are meeting Alan's sister Nicole and her family. They are visiting from Illinois for the weekend. We hope to go to the Freedom center and the aquarium and maybe an indoor water park. Should be fun and tiring.

Spring

Pizza

If Kyle could be "cured" from his food allergies and metabolic disorder he would eat lots of pizza!!!

Spring

Cincinnati trip 3, day 2

The tube that has been sutured in for a month is gone now. I'm free!

Travel back to Cincinnati day 1

We are in another airport bathroom doing a flush during a layover. It's not quite as stressful this time. But it will NEVER make my top ten list. maybe my top ten most hated experiences. Anyway...

I am resigned that we are going and must complete this process. I however have no reserve or patience. This whole thing has really been tough. I just want to pull the covers of my bed up and pretend no one else exists. Sigh.

Spring

Re: Address

Hi Cass,

Merlin is doing great! He has learned so much in such a short time. So smart! He will come, sit and "down"(lay). He is usually gentle with the kids and is just such a pleasant little guy. Merlin is sleeping though the night. (yes!!!) And we are using the crate with good success.

Our trainer TJ is really pleased with his progress. I'm thrilled! I am totally enjoying Merlin!

He did have an ear infection and threw up a lot a few days ago. We took him to the vet, and the vet said he should be fine. Sure enough, he is. Overall he has a clean bill of health.

Kyle loves Merlin and they play well. Merlin is patient with Kyle and gives him plenty of kisses. We all really love the little guy. For sure we will keep you posted as time goes on! Hope all is well with you.

Spring

On Oct 28, 2011, at 7:21 PM, linderla@linderlabradoodles.com wrote:

>
> Hi Spring,
> I just wanted to check in and see how things are going. I hope all is well
> and that you are enjoying Merlin. Just let me know if you have any
> questions.
> Thanks,
> Cass
>
>
>
>> Super thanks for the ideas. I have been talking to the family at home and
>> they LOVE Merlin. My oldest is in heaven! She has already taught him to
>> sit! And she taught him to kiss (lick her cheek) and he is starting to
>> come when called by name! My husband is really happy with him too. He
>> sounded quite impressed by the sweetie. I really wish I was home right
>> now! I told them they HAVE to send me pictures and maybe a video too!
>>
>> They have been exploring everywhere - down by the river, up by the pond
>> and all over the house! I told her to let the poor thing rest. She
>> said he is cuddly and is following her everywhere. Our 2 year old
>> Dimitri loves him too. He is very excited. My oldest Lauren said Merlin
>> is just like Dimitri! Excited and bouncy but really fun. He hasn't
>> mouth them at all.
>>
>> So as you can tell Merlin is settling in nicely! I'll keep you posted!
>>
>> Spring
>>
>>
>>
>> On Oct 14, 2011, at 6:04 PM, linderla@linderlabradoodles.com wrote:
>>
>>> Try leaving the crate where he can access it this evening with the door
>>> open. Occasionally place one of his toys in there and encourage him to
>>> go
>>> get it. Make sure the door is secured open so it does not close on him
>>> when he goes to get the toy. I don't usually recommend putting food in
>>> their crates....but if he is very hesitant, go ahead and prop the door
>>> open and place a few kibbles of food inside to encourage him to go in.
>>> Once he realizes he can go in and out and nothing bad happens, he should
>>> eventually be fine with it......but it really comes down to how bad his
>>> experience was (or at least how bad he perceived it to be). It could be
>>> that he will do just find.....so don't make a big deal about it unless
>>> Merlin does. If you act as those nothing is wrong, he may do just fine.
>>> I
>>> am sure TJ may also be able to give you some advice if there are any
>>> issues.
>>> Keep me posted.
>>> Cass
>>>
>>>
>>>> Thanks. Any suggestions about if he is unhappy with the crate tonight?
>>>>
>>>> Spring
>>>>
>>>>
>>>>
>>>> On Oct 14, 2011, at 5:19 PM, linderla@linderlabradoodles.com wrote:
>>>>
>>>>> Thank you for letting me know he arrived ok. I always hate sending
>>>>> them
>>>>> freight.....it seems like it always takes them a few days to get over
>>>>> the
>>>>> shock of it all. Don't be surprised if he does not want to go in his
>>>>> crate
>>>>> tonight.....this is one of my biggest issues with crate
>>>>> training....once
>>>>> they associate the crate with a stressful event, they will sometimes
>>>>> hate
>>>>> it for life.....lets hope that is not the case for Merlin.
>>>>> Don't be surprised if it takes him a few days to settle from the whole
>>>>> event....once he settles in and you get to see the real Merlin....I am
>>>>> sure you will love him.
>>>>> Keep me posted, and I hope you have a safe trip home tomorrow.
>>>>> Cass
>>>>>
>>>>>> Hi Cass, you'll be happy to Alan got Merlin and he is fine. A little
>>>>>> scared but cuddly.
>>>>>> Here we go!
>>>>>>
>>>>>> Spring
>>>>>>
>>>>>>
>>>>>>
>>>>>> On Oct 13, 2011, at 11:41 PM, linderla@linderlabradoodles.com wrote:
>>>>>>
>>>>>>> Hi Spring and Alan,
>>>>>>> Merlin's things should have arrived yesterday or today. Merlin will
>>>>>>> be
>>>>>>> on
>>>>>>> his flight tomorrow.....United flight 391 arriving at 1:16pm. You
>>>>>>> will
>>>>>>> most likely have to pick him up at the Cargo area....but I would
>>>>>>> recommend
>>>>>>> you call to make sure. Unfortunately your contract and check has not
>>>>>>> yet
>>>>>>> arrived.....given the situation we decided not to hold up his
>>>>>>> shipment,
>>>>>>> but it does mean that I will have to mail you a copy of the signed
>>>>>>> contract separately.
>>>>>>> If you could please confirm that Alan will be available to pick up
>>>>>>> Merlin
>>>>>>> tomorrow it would be greatly appreciated.
>>>>>>> I hope all is well with Kyle.
>>>>>>> Talk to you soon,
>>>>>>> Cass
>>>>>>>
>>>>>>>
>>>>>>>> I forgot to tell you our address. It's
>>>>>>>>
>>>>>>>> Beans
>>>>>>>> 872 Bogus view drive
>>>>>>>> Eagle ID 83616
>>>>>>>>
>>>>>>>> Thanks!
>>>>>>>>
>>>>>>>> Spring
>>>>>>>>
>>>>>>>>
>>>>>>>>
>>>>>>>> On Oct 9, 2011, at 10:28 AM, linderla@linderlabradoodles.com wrote:
>>>>>>>>
>>>>>>>>> Hi Spring,
>>>>>>>>> Thank you for the picture of Kyle.....he is adorable. I have high
>>>>>>>>> hopes
>>>>>>>>> for Merlin as well.
>>>>>>>>> I have checked on flights for shipping him to Boise; below you
>>>>>>>>> will
>>>>>>>>> find
>>>>>>>>> the arival times for Friday and Saturday (these are all direct
>>>>>>>>> flights).
>>>>>>>>> Please check with your husband to see if he has a preference for
>>>>>>>>> any
>>>>>>>>> of
>>>>>>>>> these, and I will check on the pricing for that flight.
>>>>>>>>> Friday October 14
>>>>>>>>> 1:16pm
>>>>>>>>> 5:34pm
>>>>>>>>> 8:40pm
>>>>>>>>> 11:39pm
>>>>>>>>>
>>>>>>>>> Saturday October 15
>>>>>>>>> 1:24pm
>>>>>>>>> 2:20pm
>>>>>>>>> 5:53pm
>>>>>>>>>
>>>>>>>>> Talk to you soon,
>>>>>>>>> Cass
>>>>>>>>>
>>>>>>>>>> Hi Cass, I thought you might enjoy seeing a photo of Kyle. This
>>>>>>>>>> was
>>>>>>>>>> right
>>>>>>>>>> before his surgery at the Boise river near our home. (usually his
>>>>>>>>>> hair
>>>>>>>>>> is
>>>>>>>>>> a little less messy:)). I got the contract and will get that
>>>>>>>>>> filled
>>>>>>>>>> out
>>>>>>>>>> and returned. I think the next mail day is Tuesday due to
>>>>>>>>>> Columbus
>>>>>>>>>> day.
>>>>>>>>>> And the name I wanted is Merlin. I'm still really excited about
>>>>>>>>>> this
>>>>>>>>>> little dog and his potential. I'm so ready for another dog and I
>>>>>>>>>> feel
>>>>>>>>>> really positive about all the benefits for our family and Kyle as
>>>>>>>>>> well!
>>>>>>>>>> Spring
>>>>>>>>>>
>>>>>>>>>>
>>>>>>>>>>
>>>>>>>>>>
>>>>>>>>>>
>>>>>>>>>>
>>>>>>>>>>
>>>>>>>>>>
>>>>>>>>>
>>>>>>>>>
>>>>>>>>
>>>>>>>
>>>>>>>
>>>>>>
>>>>>
>>>>>
>>>>
>>>
>>>
>>
>
>

Bubble fun!

Indian summer river fun

Dimitri at the river

Wouldn't have been this in Russia...

How do I love thee?

I love thee enough to not freak out when you put your hearing aid in the toilet and I flushed it accidentally because I was working with Sierra on music and left you too long!

I love thee enough to clean up the dog poop in the movie room because you misses his signals while you were "watching" him so I could lament the flushed $4000 hearing aide and FM system!

Bad day! :(

Spring

Merlin and Kyle

He's not allowed on the couch any more. But it was too precious. Merlins a labradoodle.

Post op day 14

I feel like I'm swimming upstream in a fast moving current. My family seems to combine against my efforts at cleanliness and order. I'm exhausted and we are just getting started. Sigh. My prayer tonight is simply to make it till bedtime. I can't remember what day of the week it is or the date. Its all a blur.

Spring

Back in the saddle

Well it's back to normal for the Beans. Everyone wanted a lot of attention. The new puppy is adorable!

We got a delicious supper cooked by Grandma Bowden and a lot of meals brought in by kind ward members. We are all set for a long time.

Kyle loved being home. He hugged and hugged Dimitri! He drove his green car around for a couple hours. He ate better than since we left. He smiled for all! It's good to see him doing so well.

How am I well, let's just skip that tonight. I won't be objective.

Spring

Sweet Kyle Cincinnati Day 11

I forgot to say that while I was crying on the last plane Kyle looked at me with a very worried expression and reached up and hugged me several times and then kissed me a few times. Ah how sweet his heart. He had no idea his yelling was my last straw....

Spring

Cincinnati Day 11

I made it to the last leg of our travel home before the flood gate for tears opened and I had a good cry. We had just over an hour in the airport before our connecting flight home. Kyle was yelling at everyone and he needed a Colon flush. I tried to go to the Delta Crown Room but I didn't have the right card to get in and would have had to pay $25 to get in. Alan texted me that the price was so big deal but it was too me.

We headed to the public bathroom to do a flush there and hopefully get to our plane in time. I was so stressed I was shaking. When we finished we left and Kyle proceeded to yell at everyone! I was near tears at that point. On the boarding ramp to the plane a man offered to carry one of our bags. That was nice and I carried Kyle. Our seat was the last row in the plane and Kyle yelled all the way there. While I sat down I promised the people near us he wouldn't yell all the way to Boise. Then I started crying. I cried till we were in the air. Eventually my stress diminished and Kyle settled down. We just landed and now I'm going to greet my kids. Wow. I hope I'm up to this. Virginia said she is bringing us dinner tonight. Thank goodness!

Spring

Going home!

11 days in Cincinnati for surgery! We can't wait to get home!!

Cincinnati Day 10&11

Yesterday and today have been a blur. Once you leave the hospital the caregivers responsibility goes up several notches. It's nice to have more control but it's also tiring to be in-charge of everything:
12 medications a day for Kyle right now. 6 procedures a day. Motherly comfort to give and activities to plan so he isn't bored but isn't worn out. Meals to find, laundry to do, transportation to provide, family at home to keep in touch with, email and business to keep up on etc etc etc.

We are finally on the plane home! We had to get up at 5 am (3 am MST). Kyle is really excited to be going home. "Home home home" he signed". Very sweet.

We are excited to see Lauren, Sierra, Dimitri, Dad and Grandma and Grandpa. We are also excited to meet our new labradoodle puppy Merlin! He arrived yesterday and is going to grow up to be Kyles service dog.

Honestly (which does not mean I don't want to go home) I'm a little afraid of how it will feel to step back into my responsibilities at home. They are staggering. I really hope I can have help with kids and meals and housework for a while till I "get my feet" back under me.

I really hope no one asks me "what's for dinner" because I don't know. I want a big spring-mix salad with kidney beans, mushrooms, olives, beets (not pickled), carrot shreds, broccoli, cauliflower, peas, spinach, purple cabbage, sunflower seeds and light feta cheese, and light balsamic vinegarette. With a side of a high fiber muffin. I want someone else to clean it all up and I want to go to bed!

Spring

Cincinnati day 11

Going home!

Welcome home Merlin!

It's been a huge success so far!  

Spring 

Begin forwarded message:

From: Spring Bean <sabean@comcast.net>
Date: October 14, 2011 6:19:13 PM EDT
To: "linderla@linderlabradoodles.com" <linderla@linderlabradoodles.com>
Subject: Re: Address

Super thanks for the ideas. I have been talking to the family at home and they LOVE Merlin. My oldest is in heaven!  She has already taught him to sit!  And she taught him to kiss (lick her cheek) and he is starting to come when called by name!  My husband is really happy with him too. He sounded quite impressed by the sweetie. I really wish I was home right now!  I told them they HAVE to send me pictures and maybe a video too!

  They have been exploring everywhere - down by the river, up by the pond and all over the house!  I told her to let the poor thing rest. She said he is cuddly and is following her everywhere. Our 2 year old Dimitri loves him too. He is very excited. My oldest Lauren said Merlin is just like Dimitri!  Excited and bouncy but really fun. He hasn't mouth them at all.

So as you can tell Merlin is settling in nicely!  I'll keep you posted!

Spring



On Oct 14, 2011, at 6:04 PM, linderla@linderlabradoodles.com wrote:

Try leaving the crate where he can access it this evening with the door

open. Occasionally place one of his toys in there and encourage him to go

get it. Make sure the door is secured open so it does not close on him

when he goes to get the toy. I don't usually recommend putting food in

their crates....but if he is very hesitant, go ahead and prop the door

open and place a few kibbles of food inside to encourage him to go in.

Once he realizes he can go in and out and nothing bad happens, he should

eventually be fine with it......but it really comes down to how bad his

experience was (or at least how bad he perceived it to be). It could be

that he will do just find.....so don't make a big deal about it unless

Merlin does. If you act as those nothing is wrong, he may do just fine. I

am sure TJ may also be able to give you some advice if there are any

issues.

Keep me posted.

Cass

Thanks. Any suggestions about if he is unhappy with the crate tonight?

Spring

On Oct 14, 2011, at 5:19 PM, linderla@linderlabradoodles.com wrote:

Thank you for letting me know he arrived ok. I always hate sending them

freight.....it seems like it always takes them a few days to get over

the

shock of it all. Don't be surprised if he does not want to go in his

crate

tonight.....this is one of my biggest issues with crate training....once

they associate the crate with a stressful event, they will sometimes

hate

it for life.....lets hope that is not the case for Merlin.

Don't be surprised if it takes him a few days to settle from the whole

event....once he settles in and you get to see the real Merlin....I am

sure you will love him.

Keep me posted, and I hope you have a safe trip home tomorrow.

Cass

Hi Cass, you'll be happy to Alan got Merlin and he is fine. A little

scared but cuddly.

Here we go!

Spring

On Oct 13, 2011, at 11:41 PM, linderla@linderlabradoodles.com wrote:

Hi Spring and Alan,

Merlin's things should have arrived yesterday or today. Merlin will be

on

his flight tomorrow.....United flight 391 arriving at 1:16pm. You will

most likely have to pick him up at the Cargo area....but I would

recommend

you call to make sure. Unfortunately your contract and check has not

yet

arrived.....given the situation we decided not to hold up his

shipment,

but it does mean that I will have to mail you a copy of the signed

contract separately.

If you could please confirm that Alan will be available to pick up

Merlin

tomorrow it would be greatly appreciated.

I hope all is well with Kyle.

Talk to you soon,

Cass

I forgot to tell you our address. It's

Beans

872 Bogus view drive

Eagle ID 83616

Thanks!

Spring

On Oct 9, 2011, at 10:28 AM, linderla@linderlabradoodles.com wrote:

Hi Spring,

Thank you for the picture of Kyle.....he is adorable. I have high

hopes

for Merlin as well.

I have checked on flights for shipping him to Boise; below you will

find

the arival times for Friday and Saturday (these are all direct

flights).

Please check with your husband to see if he has a preference for any

of

these, and I will check on the pricing for that flight.

Friday October 14

1:16pm

5:34pm

8:40pm

11:39pm

Saturday October 15

1:24pm

2:20pm

5:53pm

Talk to you soon,

Cass

Hi Cass, I thought you might enjoy seeing a photo of Kyle. This was

right

before his surgery at the Boise river near our home. (usually his

hair

is

a little less messy:)). I got the contract and will get that filled

out

and returned. I think the next mail day is Tuesday due to Columbus

day.

And the name I wanted is Merlin. I'm still really excited about

this

little dog and his potential. I'm so ready for another dog and I

feel

really positive about all the benefits for our family and Kyle as

well!

Spring

How do I love thee?

> I love thee enough to fly to the other side of the world three times to make you part of our family.
>
> I love thee enough to support you through medical school, residency and a group change so you can realize your dreams.
>
> I love thee enough to stand by you through good behavior and bad behavior and get help when my own ability isn't enough.
>
> I love thee enough to drive you hundreds of miles each month to lessons, activities and playdates so you can experience life to the fullest.

I love thee enough to let you sleep in my room every week so you know you aren't forgotten.

I love thee enough to keep life full of fun activities after the maintaince work is done even though I'd like to collapse so you don't feel all the impact of the trials in our life.

I love thee enough to help you breathe all night with oxygen.

I love thee enough to help your bones grow straight by insisting you wear a brace all night.

I love thee enough to help you hear by insisting that you wear hearing aides all day.

I love thee enough to learn another language for you.

I love thee enough to feed you through a tube four times every day.

I love thee enough to restrict your food choices so you don't get sick

I love thee enough to flush your bowels twice a day so you don't get sick.

I love thee enough to hold you as you struggle while the anesethiologist holds a mask to your face to make you fall asleep.

I love thee enough to consent to surgeries every three to four months since you were born so that you can be healthier.

I love thee enough to administer to your needs as you heal from the pain of the surgeries you need.

I love thee enough to live in a hospital far from home for days and weeks at a time to obtain the care you need.

I love thee enough to set up a 'hospital' in a hotel far from home as you convalesce.

I love thee enough to look at your body all scarred and altered and see beauty.

I love thee enough to enjoy you and thank God for each precious day with you.

>
>
>
>
>
> Spring
>
>

How do I love thee?

I love thee enough to fly to the other side of the world three times to make you part of our family.

I love thee enough to support you through medical school, residency and a group change so you can realize your dreams.

I love thee enough to stand by you through good behavior and bad behavior and get help when my own ability isn't enough.

I love you enough to drive you hundreds of miles each month to lessons, activities and playdates so you can experience life to the fullest.

Spring

Strange hospital dreams

I think it's time to come home. Last night I dreamed Kyle and I were kidnapped and we couldn't get home! At one point I actually got up and turned off his pulse ox and told the nurse I was done with alarming monitors. The oxygen is a home routine and I'm refusing the pulse ox!

Spring

Cincinnati Day 8

It's official. Kyle gets discharged tomorrow! It will be nine days in the hospital. Then we wait around Cincinnati till Saturday, then home. Kyle is still doing well. He is a little grumpy today but who can blame him? I asked for a GI consult for his eosiniphillic allergies and CSID. Its in process and the preliminary thinking if that these diagnoses likely won't clear totally even with the Hirschsprungs repair due to the immunologic involvement. That sounds right to me. Not as wonderful as "this surgery fixing it all", but more accurate. Either way, I just want to have a realistic expectation for the future diet.

Nothing else really to report. We are both ready to get home. Kyle has enough energy to be a little bored but not sleep. Foiled my plans for a nap! Sigh. So we are back in the play room playing pool!

Spring

Cincinnati Day 7

The "dark night" has passed. It was a pretty tough yesterday and a good bit of today. But Kyle seems to have turned a corner. In the last few hours I seem to see the light at the end of the tunnel. My apologies for withdrawing from texts, emails, phone calls and blog updated. I was beyond help. Some things just have to be endured alone. That dark time is always part of a hospital stay for me. Its always pretty dreadful. With patience, prayer and time, I think it's past now and I've shifted into my new role of the mom and Kyle show. Now all you adoring readers can stop worrying ;)

Today was busy getting on top of Kyles pain and sorting out the nurse shuffle that kept happening over the last day and a half. We had a twelve hour nurse today and the nursing manager for the unit came in to apologize for the inconsistencies and strain it caused. That was nice. Kyles diet is back to as tolerated and he asked for pringles and orange juice. Throughout the day he nibbled on carrots, olives, lettuce, green beans, and broccoli. He drank a bit of "dads pop" too. His tummy still hurts and he isn't on full strength Elecare yet. We have time so I'm not rushing it.

His bowels have moved- a lot... Had to change everything from the skin out and have a bath. I wasn't to happy about that - it's what we were hoping to "fix". I did learn to use his neo-Malone (from now on I'm just going to all it a Malone). I gave him his first enema flush. It was relatively easy! We had a fast positive response and I'm really encouraged. Afterwards as of now, he is totally clean. It's been 3 hours. Dr Levitt expects that it will take a lot of tweaking over the next few months to get the enema flush "right". That doesn't sound fun to be but it another one of those things that can't be avoided. We have had poo issues and 'twas foretold we will have more poo issues. That's what happens with Hirschsprungs disease. Yuck!

Kyles IV fluids were turned off. The PIC is still in place but once he was not connected to anything he decided life was much better. I got him dressed in regular clothes and we went on an adventure. We went to the pharmacy, the gift shop and the cafeteria. He walked about 1/4 mile in all. He was tired so we had a movie and snuggle time. Then he decided he was ready for more. He got off the bed himself, walked round and decided he wanted to get on my bed. (parent chair pullout) and do puzzles. Then we did laundry, got dinner and went to the play room where we played pool! And Kyle flirted with the nurses who all thought he was adorable. After a very full day we snuggled and Kyle fell asleep. He is sleeping peacefully now and I will he too soon.

Dr Levitt did say that if he continues to do well we can fly home on Saturday. I'm trying not to get to excited but that's pretty great. An interesting unrelated tidbit is the family next door is from Russia. I might talk to them tomorrow.

That's all from here for now. For some adorable pictures of Kyle feel free to visit idahobeans.blogspot.com. (I can't post photos to this page from iPhone)
Hopefully I didn't freak too many people out with my candor. I'm just human and honest about it. Anyway here's hoping tomorrow is a great day!

Spring

Cincinnati Day 7

Playing pool in the playroom. Kyles idea. :)

Cincinnati Day 7

Looking good!

Cincinnati Day 7

On the way to the playroom at Kyles request!