Laughing Because I Love

This is Frankie McDonald.  He has his own youtube channel.  He really loves to talk about weather, but also likes dancing and holidays.  He also, pretty clearly, has a developmental disability, perhaps autism.  When I watched the first time I wasn't sure if it was okay to laugh.  My conclusion is that it's okay if this is a population of people you really love, and I do.  Frankie is passionate about whatever he's talking about.  His parents are clearly aware that he's creating all these videos and likely are encouraging him.  All of us who have children with obsessions knows there are some battles you chose to fight and some that are not worth fighting.  I have no doubt that this obsession keeps Frankie very busy and in a much more fruitful way than many other obsessions.  He also keeps track of how many hits he has, so he really wants people to watch.

Some of the other videos I saw, including several radio stations,  featuring Frankie were clearly making fun of Frankie and were not laughing because they love.  That is my one reservation of sharing this video at all.  I don't want people to misunderstand that it's okay to laugh at Frankie.  Enjoying how he sees the world is different than laughing at him.  In this video Frankie clearly cares deeply that we Minnesotans need to be careful with our extremely cold temperatures so BE PREPARED!

How can you not love the extra body noises and the fantastic Canadian accent, this coming from a Minnasootah girl.  Frankie - thanks for the warning and I'll be watching you.

Youtube is for Eternity

I was reciting John 3:16 with Callie the other night and I asked her - eternal life - where will you spend eternal life?  She thought a minute and blurted - "Youtube".  That girl just cracks me up.  We repeated the same scenario last night and she replied, "Crazy ride".  I think we'll move on tonight - not sure I want to hear her next description.

That is not how I envision heaven at all, but with her current obsession with amusement rides this apparently signifies paradise.  Perhaps it's the possibility of all her fears dissolving, never needing her earmuffs to cover up the myriad of noises that daily assault her hearing and send her running from rooms or hugging the earmuffs tightly to her head.

I envision heaven for Callie being a place where she can run, play, dance and sing without worries of sudden noises.  Where her senses can take in all the sounds, smells and sights with joyous abandon and without fear of any kind.  How awesome that will be - seeing all my kids with all their earthly chains - physical disabilities, cognitive delays, mental health issues, learning disabilities - freed to express and experience everything to the fullest will truly be heaven for me too.

To quote a song we used to sing, "Heaven is a wonderful place - filled with glory and grace"

Toddler Tornado goes home

We had a really fun couple of days with Toddler Tornado.  He has autism and his mom and dad have done an excellent job helping him deal with this confusing world.  It wasn't difficult taking him out places because they've done the difficult job of teaching him to hold your hand when you are walking places.  As long as he held my hand he did a great job of behaving himself.  Every once in awhile he would drop my hand and slowly edge his way further and further away from me.  As he "escaped" he would begin to get over excited and start acting "silly".  It seems as though the hand holding just helped him keep his act together, so to speak.

Probably the biggest battle we had was getting him to eat.  His food choices have become increasingly more restrictive.  He really hadn't eaten anything all day on Thursday and we wanted to be sure he didn't wake up in the middle of the night hungry.  His mom and dad brought steak for him and after cooking it we offered it on a fork, but he wouldn't have anything to do with it.  Finally Mark offered it with the tongs he had cooked it with.  That he would take and he ate it all.  His parents told us he had several forks at home that he favored as well.  Who can know why he has issues with utensils, but he does.

These are the kind of behaviors parents of kids with autism deal with every day.  They can be overwhelming to deal with, or you just realize it's just the way it is and it becomes part of your "normal".  Our daughter Callie deals with many sensory issues as well.  Today it started raining.  She has such an intense fear of lightening and thunder that she climbed into bed and covered her head hiding from what the rain might bring.

I've gotten the impression that some people look at the adjustments we make for Callie and those that are made for Toddler Tornado and think we may be "spoiling" them or giving in to them.  They simply don't understand how deep these issues are - sensory or otherwise.

 I know I had fears as a kid, still have them, but never debilitating enough to hide in my bed.  She is my hero every day that she gets up and deals with a world which often presents itself to be a very scary place for her.  My grandson is my hero as well as he is living in a world that often perplexes him in ways I don't understand.  He begins extensive therapy next week and I'm so excited to see how he progresses as I know he will.  They are over comers - every day that they get up and live in a world which I find easy to navigate, but is often completely baffling to them.

Every time they allow me to take a peek into how they experience the world it's a privilege.  How blessed I am that they are a part of my life.

Every time I think I know everything............

It has occurred to us a hospital bed might be helpful in physically dealing with Shannon - you know, before we too need back surgery. As we mentioned the possibility to her new social worker she said - surgery or not she should be eligible. It may sound ignorant, but it never occurred to us to ask.

Wouldn't you think with all the specialists in her life - social worker, physical therapists, occupational therapists, orthopedic specialists etc. etc. - someone might have asked if we needed one? Sometimes I think they all forget - for us - this is the first time we've dealt with all this. When we had foster kids with physical issues - we bought our own lousy bed - and I mean lousy - it cranked and was just kinda icky.

We also need a new bath chair - with the dual purpose of sitting in the bottom of a tub or rolling into an accessible shower. This time, they won't let us even order one until our shower is installed - kinda ridiculous when it works for either. So, the heat is on for Mark to get moving on the bathroom. Poor guy is still pretty tired and has to rustle up the energy to get that going. I'm so grateful we can do this as a team. How exhausting to go it alone.

For now, we have put risers under Shannon's bed legs which at least puts her up to our waist height for lifts in and out. More room under the bed for often used care items and such as well. Right now, Jill is putting some vinyl butterflies and flowers to brighten up her room - the white walls were starting to feel much too hospitally.

Spinning in circles

When you have the variety of special needs kids we have the time and attention that these past two weeks we have taken for Shannon is bound to affect some of the other kids. For those who have attachment issues it brings back those feelings of abandonment when we are away so much and even when we were home our attention wasn't on them.

We have had meltdowns the likes of which we haven't seen in probably a year with one. Between the demands of summer school, which I'm sure doesn't help his good feelings of self esteem as his learning disabilities make school a huge stressor and the time away he is falling apart. So, we try to scrap up a little extra energy to give the one on one attention that they need and pray it's enough for now.

Then we have our goofball daughter spinning around in the living room - I think my head actually feels that way right now. Between weariness and so many chores and information circulating my brain is definitely overloaded. Maybe I should join her next time - at least that kind of dizziness goes away.

Day 7 - hopeful

So, today we started her feeds at the ridiculous rate of 1/2 oz formula and 1/2 oz. water - which worked. Then we went up to 2 oz. of 1/2 and 1/2 - then 3 and just an hour ago 4 - hallelujah we may be on the road to home sweet home. After watching almost the whole floor of kids empty out - 8 went home - only 4 of us left - we sure hope to be heading out before 1 tomorrow.

This day was one of those days when this diverse family was just a lot to handle. We had an adult daughter miss her work bus, so had to run her to work after loading 2 on their summer school bus and dropping one off at his summer school program. Then, we get a call that Christian's G-tube fell out so Mark had to deliver that to school and then put it in as the school "nurse" had no idea how to do that - seriously.

Then I got a call at Gillette, the hospital where Shannon is, that our former foster son, who we retain guardianship for, was at Gillette and needed a form signed in order to be allowed to pay for his own dental as MA no longer covers two visits a year - again, seriously? So, I walked over to do that and called Mark on the way back and we commiserated on what a ridiculous life we lead sometimes.

Should we go home tomorrow we will be embarking on a new path. There are many things that will never be the same with Shannon - none bad, just different - a new normal - yes even at our house there is a normal - Reeves style normal.

Day 6 - A set back

It's been a busy couple of days. Yesterday was looking very good - her G-tube was switched back from the temporary G/J tube, her drain tube was removed as was one IV and tube feedings had started - very slowly, but all systems were a go. We thought we were on track to come home on Wed.

One little issue came up Tues. when the surgeon's resident was insisting on having an x-ray taken with her sitting on a stool - mind you she had only been in her chair once and for less then an hour, not to mention she never sits much straighter then 30 degrees. So, I said - not going to happen. I had several nurses and the PT all agreeing and a call was put in to the surgeon that also agreed the pics should be taken sitting in her chair. I felt a little like a naughty girl looking for that guy all day to say nana boo-boo - Mommy 1 - Resident 0.

During the night last night, my turn, they had to turn the feedings off as her little tummy got very swollen and hard and she broke out in a sweat. After X-rays they could see her intestines were full of gas and so all feeds were stopped and the IV started to flow again. As I left tonight she was more comfortable and we finally saw a little smile before we left as her dear Linda is spending the night with her. We are blessedly home together for about 12 hours and are looking forward to an awesome and comfortable night's sleep.

Thought some of you would enjoy the before and after photos. How she tolerated that horribly crooked little back I'll never know. She is one tough cookie.

Another good night

Last night went well for Shannie. My 54 yr. old body did not appreciate the very uncomfortable sleeping arrangements, but complaining just seems really lame when you look at what she's dealing with. She was up in a reclining wheelchair for an hour last night and did really well.

Tomorrow will be a big day - the drainage tube in the back will be removed and the dressing removed and replaced. They are also planning to adjust her chair to her "new" and hopefully improved body. This will likely require several in and outs of the chair which just can't be comfortable. So, we forge ahead. Our girl is just such an inspiration to all of us of perseverance and courage.

Thanks again for all the prayers - they are very much appreciated and definitely making a difference.

Too funny

Just talked to Mark about how the night went. It went super well. They came in during the night and put the vibrating vest on again. Mark woke up to it and couldn't figure out where he was - thought he was on an international flight to Singapore and all the little lights were instrumentation in the plane :-) I suppose that was a disappointment for him - he loves to travel.

Anyway, they didn't know he was listening and Shannie was making little ah noises with her mouth open and the respiratory tech and nurse said she sounds like a little lamb - which is Mark's nickname for Shannie!

He said this morning - I've got to say my biggest fear of her having extreme pain just hasn't happened. This hasn't been true with her previous surgeries, so it's been a huge relief. Now, if today's switch of meds still holds it - that will be totally awesome.

mostly good day- a few rough spots

For the most part it was a good day. She moved out of PICU and onto the regular floor. She had two bouts of low O2 levels which required suctioning - not a fav. This evening they also used a BD vest which basically pounds your chest area with air, if you will. Wasn't sure how uncomfortable that'd be, but she tolerated it well. The follow up suction was hard, but daddy said after I left she was sleeping deeply again.

Tomorrow is a big day. She'll be off the PCA - patient controlled analgesic, which is controlled by her caregivers in her case. Basically that means she'll be off instantaneous pain relief and will be backed off of the harder narcotics till tylenol holds her pain. Also, they will begin her tube feedings which will be via the new G/J tube. So, praying all those changes go smoothly and she won't be too uncomfortable. Also that her "bowels" - sorry if that's TMI - will wake up, if you will. Very important.

Daddy is there for the night and tomorrow. A few siblings will visit tomorrow evening and then it'll be my turn again. Her big bro Jonathan will spend Sun. with her so we can go to church - if she behaves herself ;-)

Pretty good night

Good morning - it was a pretty decent night for Shannie. She spent some time on each side and is tolerating it well. Her oxygen levels kept dropping, so they put a mask by her with O2 and that did the trick. She hates coughing even when she's well, so they've had to suction her some which isn't too fun.

They just removed her aerterial line and will be moving her out of PICU and onto the regular kids floor. That will be very nice, although it's been very comfortable here as well. The PICU is brand new - she was the first patient when they opened the new PICU at the U about 6 yrs. back. This is a habit that really needs to be broken ;-) Everyone is always so thrilled with their new digs and we're trying to be gracious "guests".

so far so good

At first sight Shannie looked pretty rough. Her face is pretty torn up from the tape and was also quite swollen from laying on her stomach all that time. We saw her incision which is from her neck to the base of her spine, but amazingly looks pretty clean.

I had to laugh, incredulously, when the surgeon's assistant - called a fellow - said something like she looks pretty good. For real? I think it might have been one of those things you say and then hit yourself on the head later, but for crying out loud think first man.

Shannie is doing incredibly well right now. She has pain, but it seems to be well contolled and the nurses are right on top of it.

Mark went home to be with the rest of the kids and will be back tomorrow for a 24 hr. stint. He had spent all day yesterday here as well, so was anxious to go home I think.

Thanks for all the prayers - we surely appreciate them.

She's almost done.

We just talked to the surgeon. It went very well. She lost 2 pts. of blood which is about 1/2 of what she has and was to be expected. One pt. of donated blood was given and about 2/3 of her own pint was cleaned and put back in. The rods went in beautifully. Cadaver bone paste was used to secure the rods into her pelvis. He said we should expect she'll look different - longer and her hips may look more tilted as she's been compensating for her out of whack back.

He thought they would remove the intubation as she's done well - which would be awesome. I will take the first night and Mark will get some much needed sleep. Then tomorrow we'll switch. She will be in PICU for about 2 days he said.

A unexpected and wonderful surprise was running into our favorite social worker who was here with her niece. So nice when God plants those little lights into your, otherwise kinda gloomy, days.

I'll try to update after we see her, but sometimes it can get pretty crazy once we get to be with her.

She's in

Shannie went in to surgery right on time. After talking with the surgical nurse, surgeon, anesthesiologist etc. we were again struck by how involved this is. She will have a central line and an arterial line as well as all the other tubing that goes with surgery. There is a 10-15% chance she will need the intubation and respiration tubes to remain in after surgery - we are really praying that won't be needed as her gag reflux is so strong she really hates that.

Last night as we were bathing her according to the new standards - all clean towels, new bar of soap, clean bedding and jammies - we were saying how it felt a little like Abraham must have felt when he took Isaac to the mountain. We know Shannie knew something was up, but the details are a mystery to her. It feels a little like taking an innocent lamb to slaughter.

We should receive several updates during the day and will try to post if the computers are available.

Anticipation - and I don't mean the good kind

There are certain events in life with which the anticipation is as much a part of the enjoyment of the upcoming event as the event itself. Weddings, vacations, birthdays or big anniversaries and such. Other events create an anticipation wrought with anxiety, fear and trepidation. That is the event for which we are gearing up.

On Wed. Shannon will be having her G-tube switched into a G/J tube in anticipation of her surgery Thurs. She is having posterior spinal fusion - which means rods will be installed into her back from the top of her spine to the bottom. Her scoliosis has created two 60 degree angles. Besides the pain in her back that it is creating she has pain in her left hip and left as it is pulling her femur out of her hip socket. She has already had two surgeries to correct that situation. Hopefully, this surgery will prevent or at least slow down the need to fix her hip again.

I love this quote from Mother Teresa - "I know God will not give me anything I can't handle. I just wish He didn't trust me so much." Amen sister! I'm sure I'm not the only one who has times where you just want to say - really God you thought I could handle this? Maybe I'm the only one, but I'm pretty sure it's universal.

So, I will attempt to update anyone interested in Shannon's progress over the next few weeks via this blog. There are computers at the hospital we can use if they are available. Either Mark or I will be at the hospital at all times. Our wonderful church family will be providing us with excellent food during this time too. This morning a time of prayer was set aside for Shannon and we were very touched by all those who joined us. Knowing our church family is keeping us covered in prayer is very reassuring.

Shannon is such a blessing to so many people and sometimes how she impacts people is really amazing. I know Mark and I have learned so much from her and know these next weeks and months will again be times of growth for us all - literally for her as the surgeon predicts she'll gain 2 inches as her spine is straightened!

Callie loves worship music at church. We've been listening to the team practice before the service and she loves it. She has her perennial request - Lord I lift your name on high. I wasn't paying attention, but after requesting the song, our worship leader Rachel and the choir and the instrumentalists all began to play and sing it for her. Now that is a church family to be proud of. They definitely put even the least of these first and foremost.

As the pastor was talking this morning Callie stood beside him, folded her hands and apparently began to pray which Pastor Scott immediately seized upon and had us join her. He repeated what he could glean from her words, which can be difficult to understand, but she thanked God for all the people being there and for Jesus and God. Our little girl who had no language at 3. I've said it before and I'll say it again - she is truly a miracle.

Ah - Junior High

Fun start to this week. Dinner with 3 girlfriends that I've known for like 17 yrs. now - wow! This year was the first time we hadn't managed to get together around Christmas, so it had been a long time. As is often true with true friends we picked right up where we left off. So much to catch up on.

We met as jr. high youth leaders at church. My eldest was just entering jr. high and we were new to this church. As is often true in a large church you really have to find your niche to develop friendships - and in jr. high I found mine. Not sure what that says about me, but there you have it. It was a tough age for most of us and I now have 2 more kids of my own entering middle school next year.

I must say I don't look forward to parenting them through those ages. For my older son with Down's it was the most difficult time. He rode the "regular" bus and kids would spit at him and throw pencils. He was barely verbal, but could spew a few swear words, which he usually did when he got off the bus. Our neighbor girl who was the same age was so upset by the abuse he took - which we wouldn't have known about had she not told us. How much different it is for typical kids who have the privilege of developing relationships as children with kid's who have disabilities. Their comfort level towards adults with disabilities will be so different and rather then recoiling from their touch - yes that does happen- they will show warmth.

Christian and Shannon will, however, ride the "special ed." bus. Their ride to school will be safe and Shannon will never be alone in school due to her disability, but Christian eventually may navigate the hallways alone sometimes. So, we'll see. In his mind I know he can't imagine that anyone wouldn't want to be with him. I know he'd understand if people were outright mean to him or outright teased him, but he might miss the subtlety of some teasing.

Well, onward and upward they go nonetheless and they, like many typical kids, will survive the trials and tribulations of school life to enter adulthood where everyone is just nice to each other. Yeah, well, fine - my rose colored glasses work just fine for me. How much kinder and gentler our world could be if we all wore them. Come on - try them for a day and let me know how that works for you.

Mazel Tov!

This morning was going so well. Everyone got up and dressed on time. Mark is still gone, so soloing through the morning routine is tricky. Callie was a little off, had trouble falling asleep last night and woke early this morning which doesn't help. Ella and Jacob headed off to school and I put Shannon on her bus.

As I'm helping Christian get his shoes on in the dining room Callie passes me into the kitchen and I think - awesome she's going to get her shoes on. Then I hear a loud - smash - as she throws a juice glass at full force onto the kitchen floor. It spread from one end to the other of our very old and full of crevices and cracks hard wood floor. I immediately and firmly send her to time out and sit on the floor of the dining room. She starts her - that's wrong! Then spells it - W-E-D-R-N - WRONG! So, her spellings not so great, but she certainly understood it was wrong.

Clearly impulse control isn't one of her best traits. She just can't seem to stop herself, although after the fact can state that is was wrong. I swept and vacumned and shook out the rug, which I managed to finish before it was time to get Callie and Christian out to the bus. Christian seemed to understand I was harried and was well behaved - a nice side benefit.

After they left and I got my perspective back I thought well we should have just shouted Mazol Tov!

Funny start to the day

As we're trying to put together breakfast and such I hear Callie yelling "Mom Mom" from the living room. I round the corner to see her completely naked. Laughing I say let's get you dressed. As I open the door to her room, which she shares with Ella, I hear Ella say - Mom I couldn't do anything because I was naked too. I laughed and said, "Oh, Ella she just doesn't get it." Ella said, with a sigh, "No mom and she never will." We had a good giggle and then I thought - oh, please Lord I sure hope she does - get it I mean. I love those silly girls and my very understanding El-Bell - she sure loves her sister.

off school

Another teacher inservice day.  No school for my kids.  The good news is they slept in till 8 - awesome.  The better news is it's 11 and there have been no major fights of any kind.  I have 6 kids in the house - so that's pretty awesome.  

So, now it's 8:40PM - more then a few interruptions.  All in all the kids got along well today.  

Tomorrow night my son Conor and grandson Dominic are joining the 6 at home for dinner.  His wife, Shannan, is a standup comic and couldn't pass up a gig for Valentine's night.  So, lame as it is, he is spending Valentine's day with his mom and siblings.  Dominic just started walking and I haven't seen him on two feet yet, so am super excited.

Hopefully, we can keep Callie in particular from knocking him over.  She has developmental delays and is VERY impulsive.  She has no patience whatsoever for crying kids - fortunately Dom rarely cries, but you never know.  It's hard to take her anyplace where kids are around as you never know when she might be set off.  

I suppose I should get the kids snacked up for bed - 

Later -