Yes....we're all feeling better!!

I am remiss at posting on the blog....AGAIN!!!! Sorry to all our readers that really want updates on how things are in the Robertson home.

We are all feeling better....It took about 4 weeks, but everyone is on the upside of sickness. Connor has a bit of an ear infection, but we are treating that with drops and he is in good spirits. Alex and Mackenzie are doing great and acting like a typical 2 year old (almost) and a 6 month old.

Randy is gone A LOT and we are struggling with finding balance. Everyone seems to think the life of an airline pilot must be so glamorous.....IT'S NOT!!!!!!!! He averages being gone about 22 days a month and is never home for more than 3 days at a time. It doesn't leave a lot of room for normal family life. I'm not complaining, I'm really not....We are so grateful that in this economy Randy has a job, so we will just pull up our boot straps once again and find a way to survive and thrive in the midst of it.

Connor's schooling has become quite an issue. We have decided that his preschool class is not the best placement for him and we are awaiting a new IEP to discuss other options for him and his educational, developmental and therapy needs. It is a fight, I will tell you that, but this Mama is up for the challenge, whatever it takes.

Mackenzie will be 2 in just a few weeks. I can't believe our little sweet pea is such big girl. She has become a bit of a finicky eater.....that's not fun, but I'm hoping she will grow out of that. She is talking more and more and is really a little chatter box. Some things we completely understand, other things we think she may be creating her own language. We work with flash cards and try to have her repeat everything we say. She's coming along on her animals and sounds, but she seems to only want to "show off" with us. Little stinker!!!

Alex is such a handsome fella!!! He smiles all the time (when he's not crying...Hee Hee) and has the greatest little laugh. He is definitely teething and we know that is miserable for him. He hasn't got the sleeping through the night thing down yet, which is really becoming a difficult thing for me. I do much better with the tasks of the day when I am rested. We have been unwilling to let him cry at night for fear that the other munchkins would wake up, but I think we're going to have to start letting him work it out a bit more on his own. Alex is rolling over sometimes, but not consistently. It will come all in time!!!! He loves to watch his brother and sister make him laugh...it's so cute. He is a big fan of his exersaucer and his Johnny Jump Up!!

Lori is trying her best to stay on top of all the family needs. We have recently transitioned away from Randy's military benefits and into the real world of insurance. It is scary to say the least. We were incredibly blessed by 100% coverage up until March 1st. I am currently fighting the battle of coverage for Connor's home health for his g-tube and feeding supplies. We have been told that Blue Cross/Blue Shield does not cover anything for home health coverage. This is scary because it is about a $4,000.00 per month cost. I am trying to go the route of getting letters to explain the medical necessity of these items and request for coverage. The final word is not in yet, so we are certainly hoping for positive results on this issue.

I know it is a travesty that I haven't posted pictures in a while.....I will honestly try to find time to do that. Quite frankly I haven't wanted to take pictures of the kids when they have all been so sick. Who wants to see sick kid pictures!!! Now that everyone is on the mend, I will try to snap some fun shots of the kids so everyone can see how they are growing.

Thanks so much for all your kind comments and encouragement....we LOVE getting your comments. Sometimes your comments have been exactly what I've needed to get through another day...so keep 'em coming.

Lovebug Hugs,
Lori

I can't believe it....I really can't believe it!!!!!

I feel like the plagues have been sent to the Robertson home. After what seemed to be a successful 1st week of preschool, Connor awoke that Friday (the 6th) with a runny nose. By Sunday it had quickly turned into a cough and fever and I ended up in the doctor's office with him last Monday morning. He had a fever of 102.3 and lungs that looked pretty yucky. After a five hour trip to the doctor that included blood work in the hospital lab and a trip to radiology for X-rays and two inter muscular antibiotic shots, we arrived home with oral antibiotics for some type of unexplained infection in Connor's body. He had a miserable night last Monday and then we headed back into the doctor the next day for more shots. He has started oral antibiotics now and on top of all the other symptoms he has a yeast infection caused by the medicine. Poor little fella.

It doesn't end there.....Wednesday Alex and Mackenzie came down with the same symptoms and high fevers....Alex had a fever of 102.4 and Mackenzie had a fever of 102.8. So off we headed to the doctor with the two of them. Diagnosis....Mackenzie has the croup and Alex has bronchitis. Everyone had a miserable night with little sleep and Thursday everyone was worse. We let it ride through the day to see if there was a light at the end of the tunnel, but alas, another sleepless night with miserable sick kids. Friday I ended up taking Connor and Alex back to the doctor (4th trip this week) and I was convinced that someone was going to end up being admitted to the hospital. After X-rays were taken of Alex it was determined that he has bronchial pneumonia and it just has to run it's course....Connor was definitely worse, but since he is already taking antibiotics there was no change in his course of treatment. So we headed home again for what looks like the long haul of sickness.

Ok, now let's top it off....I have picked up the same virus, same symptoms and same high fever. I honestly think America's Funniest Home Videos has secretly installed hidden cameras in our home so someone can get a good laugh out of our misery. Thankfully Randy is pretty well symptom free as he is back on the road, as of yesterday, with American Airlines. My mom has graciously agreed to, once again, bring her helping hands over to help us out. It's now over a week and it doesn't look like there is any end in sight.....yet. I know this will eventually pass, but I can't help but feel totally overwhelmed with why this keeps happening to us. We never thought that we would be the family with the sick kids and the ones who couldn't partake in the normal activities of daily life, but here we are in a place that we never thought we'd be.....AGAIN!!!

So as for school........I don't think we'll be sending Connor back to school as he is just too medically fragile to get any real benefit from the experience. I am so sad because I was so looking forward to this new adventure for him and an exposure to something fun and exciting. We were hopeful that this would increase his leaning ability and his developmental progress, but for the time being it just ceases to be productive to continue because when he (and the rest of us) are sick there is no progress being made.

Well, there you are. I really can't believe that we find our self here, but yet, here we are. I will close now as there are runny noses to wipe and much comfort to give. I know we've asked for a lot of prayer, but we humbly ask for it again. Please pray that we would find some reprieve from the storms of life and sickness around here.

Lovebug Hugs,
Lori

It Doesn's Seem Possible...But It's Here......

Connor had his first day of preschool today!!!! It seems just like yesterday we were snuggling him in the hospital after he was born and now look at him.....on his way to school.


Connor is so happy to be starting school today. He woke up in a great mood....smiling at every turn. Here he is having a good healthy breakfast before leaving for his big day. I was always taught to have a good breakfast before school.....how I wish I was scrambling eggs and flipping pancakes for him. I hope that I will be able to do that for him one day, but for this day it's his usual dose of Pepteman Jr. - Full of vitamins and minerals....I hope!!!!


This was the card that I found for Connor over a year ago. I've had it tucked away in a special place just waiting for this day to arrive. It was waiting for him at the breakfast table. How perfect that it's a "Little Bug"!!


Ok Connor....Here's the deal...You are going to school today without me so you better learn lots of fun games to bring home and teach me OK. You're the first one to start school so make sure to remember everything so you can tell me OK. Have fun at school you lucky bug!!!


I'm all strapped in the "bug bus" (aka Mama's van) and ready to roll!!


Arriving at Alpac Elementary....My PreSchool!!!


Hey, I found myself in the big mirror in my classroom. How cool!! That's my new friend Victor behind me.


Here I am with Teacher Noell....Isn't she pretty....She's my new teacher. She made sure the classroom was all ready for me with special chairs and even a special toy that she knew I would love...It lights up, plays music and has balls.....MY FAVORITE!!!


I had a great time in the therapy room.....Lots of fun stuff!!!


Here I am with Theapist Natalie and Therapist Shayleen...They are my new friends...But I can tell they are gonna make me work hard to learn new things...Good for them, I need someone to crack the whip every now and then.


Who would've thought....my first day of preschool and they let me use scissors.....and come to find out, they're standard issue here in preschool. Yippee...
I didn't like them very much though, so teacher Noell used the hand over hand technique to help me learn. I still need A LOT of work!!


Here we are cutting out sparkling fins to put on my fish!!!!


Craft time with my new posse of preschool pals.....Kendrick, Cole, Victor!! I hope we'll be great friends!


How cool is Teacher Noell???? She let me play with shaving cream while the other kids had snack time....That was fun. Hopefully I will be having snack time with the other kids soon, but until then, I like the special attention!!

Look at me.....I'm practicing getting ready to shave.....Don't worry Mama I'm not growing up that fast yet....I was just kidding!!! HEE HEE

Here's my little bro Alex.....Isn't he cute. He's learning new things too. He just turned 5 months old and he is 13lbs 10 ounces. He's still a little fella, but we'll keep him. He loves to sit and play in his bumbo chair and jump in his johnny jump up. I guess we're all jumpers in this family.

Hope you enjoyed the pics. It's off to bed now for some rest....Tomorrow's another day of learning.

Lovebug Hugs,
Lori

Home at last!!!

We arrived home from MN last night around 5:30pm. It was good to walk into the comfort of our own home and to see the smiling faces of our children. We celebrated our 5th anniversary yesterday as well. Not the type of romantic experience one would hope for an anniversary, but as we all know, we'd do anything for our children.

Exhausted from the traveling is an understatement. I am just whooped!!! Tired, sluggish, headache....Ugghhh!!! The kids had a difficult time sleeping last night, so there were lots of moments in the rocking chair. Randy had to leave for the airport again bright and early this morning as he starts back to work this afternoon. So, life moves on......No change, just the typical grind.

It's obvious that Connor missed his toys and Mackenzie a lot. There have been lots of smiles and giggles which does my heart good. Little Alex is getting back into the swing of things getting Mama's milk without any difficulty....let's just hope and pray Mama's milk comes back in 100%.

I was hoping to post more pictures, but a las, Randy took the other computer with him and that's where they are all stored. I will have to post pictures after he returns from this work trip. I think we'll have a 1 or 2 day turnaround before he will leave again for 6 days.

So here we are. Home!!!!

Lovebug Hugs,
Lori

Packing Up & Going Home!

There isn't much more to say than this......................We are going home discouraged, baffled, bewildered and down right disappointed. We had hoped for so much more than this for our trip, but for some reason this was not our time for answers. We appreciate everyone's prayers, encouragement and messages. We have heeded the advice given and we will follow up with the Wisconsin doctors over the phone. We just don't have the energy to chase another path right now. Randy has to turn around and fly back out to work in California as soon as we get home, and Lori just doesn't have the strength to deal with Connor and all the doctors on her own if they were to go to Wiscconsin. Plus, it is time to get home to the other kids and to nursing Alex too. We tried to make the most of our stay here and we will post a lot more pictures once we are home. But for tonight, we must find some rest. Today was just exhausting not getting anywhere with the doctor. It literally sucked the life and hope right out of us. In a nutshell, we were told to possibly change Connor's formula, slow down the rate of his feeding and add Benifiber to his formula. All the way to Minnesota for that??????????????? Go figure. Poor little guy is in so much pain from his g-tube site he just screams. It is raw, red and bloody and even that was not cause enough for concern or intervention. We must now go about the business of figuring things out on our own. I don't know how and I don't know why, but this seems to be the case.

Frustrated and Tired.
Lori

Tears are falling...

We've been released from the hospital after what was a frustrating and unproductive stay. Nothing came of the tests that were preformed on Connor today other than to say that everything is just fine. No dumping syndrome, or if it is it is extremly mild. No Hershenbergs syndrome. His anatomy is perfectly normal so there is no reason that he shouldn't be able to preform typical GI tasks without problem. Well, the problem is that that is not the case. We are so frustrated and angry. I have spent the entire night in tears, Randy is mad and Connor has been screaming in pain because they changed his G-Tube and it is raw & bloody. They released us with the most ridiculous orders and no pain management for Connor. We are glad that Mayo Clinic has been helpful for others, but for us it has been nothing but trouble.

We are at the Ronald McDonald House tonight and tomorrow we will see the original doctor from Monday again. The only things that they have told us are to change the rate of speed at which Connor gets his feedings and maybe that, along with a formula change will do the trick. In their eyes, there is no urgency of finding what is causing the problems, only experimenting with things we've already tried. Granted we are tired, frustrated and far from home, but we are starting to feel that things are never going to change and this was just a major wild goose chase.

Forgive the candidness in which I speak, but it is from an aching mother's heart who is weary from this long battle. As always, we remain hopeful but even that is waning.

Lovebug Hugs,
Lori

PS ~
I understand our little angels at home got lots of extra TLC and playtime today. How we loved the pictures and videos on Facebook. We are ready to come and see them.

At the hospital

Well today we admitted Connor to St. Mary's Hospital at 8am. In typical hospital style, nothing really happened until after 3pm when they started taking the blood glucose tests before and after Connor's feedings. They are looking for a dramatic drop in blood sugar to occur if he does have Dumping Syndrome. So far, the levels are not remarkable enough to make any determination. He had 5 episodes today and each one of them were missed by the doctors. We would alert the nursing staff that "this was it" and no one ever came until the episode was complete. So, they will be continuing with the plan for tomorrow which is to send Connor into the OR under sedation for quite a few procedures. The results, I'm told, might take a while, so I don't know what the plan is for us after the procedures are done. We do know that we have a follow up appt. with the original Dr. Tung on Friday at 3:30. So, we remain patient, hopeful and expectant for good things.

Another thing thrown out by one of the doctors today was something called Herschbergers Disease. This is where the muscles and the nerves in the anus do not cooridinate during a bowel movement. They aren't sure, but they will check for it. So far, a lot of talk and not a lot of movement, but I guess it will happen all in time.

We were able to get an available room at the Ronald McDonald House which is right across the street from this hospital instead of across town. I will be staying in the hospital with Connor tonight and Randy will be over there. Depending on what the plan is for Connor, at least we have a convenient and comfortable place to stay once we are discharged from the hospital.

Thanks for all your continued prayers. We still need them very much!!!!

Lovebug Hugs For Tonight,
Lori

PS ~
Today back home Miss Mackenzie had a fun play date with Auntie Shawn. I've seen the pictures over email and watched a brief video of their time together. It brought tears to our eyes to see her having so much fun, but we are happy to see her having fun. It's harder than we ever imagined to be away from the other kids. Our thanks go out to Grandma Nanny and Grandpa for staying with them and everyone else who is stepping in to provide company and fun for them. You are all dear to us.

Pictures from Tuesday!!!

The start of the day...a big smile!!!


A silly look from a silly boy!!


Playing Davey Crocket with Daddy and Mama on the bed!!!


Davey, Davey Crocket King of the Wild Frontier!!!


Checking into Nuclear Medicine for all of my testing. You can tell by the look on my face this isn't gonna be fun.


Here's the big machine that took my pictures 7 times yesterday. I had to lay still for 4 minutes...It took 4 people just to hold me still for that long.


Mama's taking off my probes.....Yippee, that means I'm done with that test!


Hey Mackenzie, we found Mickey Mouse in Minnesota. What's he doing here? He's supposed to be at home with you in the clubhouse doing the Hot Dog Dance....Hot Dog Hot Dog Hot Diggity Dog!!!! I miss morning cartoons with you sis.....I'll be home soon for a breakfast date with you!!


Connor cruisin' along the waiting room floor to Daddy!!


Watch out ahead....It's a runaway Bug!!!


Connor and I went exploring and you wouldn't believe what we found. Daddy took the shuttle to WalMart (he forgot socks...Mr. Always Prepared) and me and Mommy found lots of fun stuff. The first thing we found was a cool beaver and duck pond on the kids unit.


Here we are...see the little ducks?? I'm glad Daddy and Abbey weren't here to see those ducks or there would have been a problem!!!


Mama even found a big fish tank so we could watch Little Nemo!!!


Can you believe it, we even found Noah's Ark.


Here's proof that there really is a Mrs. Noah!!!!


I love to pose with my new friend Teddy Bear!!


Saying a prayer in the chaple!!! Lord, Please heal our little boy!!


Ok, it's time for school. Mama had to get some educational time in with me so we headed to the library for some reading. It's always nice to read a little Elmo and Winnie the Pooh!!


Oh yeah, and Mama had to stop off in the pumping room a few times....That Alex is sure lucky that Mama wants him to have the good stuff.


Playing Music Box Dancer with Daddy...Yep...that's right, my dad, the pilot, knows Music Box Dancer!!!


Sticking my tongue out with Daddy is fun!!!

End of a long day (Tuesday) waiting for the shuttle back to our hotel and we need some rest...can you tell???

Here's the plan...

Today was a long 7 hour test day. We checked Connor in this morning at 9am to St. Mary's Hospital where we headed up to the 6th floor to Nuclear Medicine. He was administered a radioactive sustance that they proceeded to watch travel through his body for 7 hours. This test is called a gastric emptying study. In typical individuals you would see the stomach empty between 20-40% after 1 hour. When we heard from the doctor this evening with results, she was concerned that Connor's emptying was "rapid". In the first hour, Connor's emptying was 80%. By two hours in was 87%. This could be consistent with his symptoms of pain, vomitting and discomfort when having a bowel movement. This is called "Dumping Syndrome."

Because of the results today, we have been told to admit to the hospital tomorrow as an inpatient and he will be observed with his normal feeding schedule. During this observation, they will test his blood glucose levels after each feeding and during the episode. These results should direct the doctors as to the course of treatment if this is dumping syndrome. If it is dumping syndrome then we will travel down a different course than originally planned. If it is not, then we will continue with the plan which is following through with Upper GI's, Lower GI's, Lab work, and x-rays all done under sedation on Thursday at the hospital. We will definately know more tomorrow, so for tonight we will hold off on posting the pictures of the day. We must let Connor get to sleep and us too because we will board the hospital shuttle at 6:30am. We will have computer access tomorrow so we will post pictures and information there. Please continue your prayers. We definately came here to get on the right path and to find out answers. How we have hoped and prayed for a miracle of healing, but maybe it is a diagnosis that we will recieve. It's all still in the Lord's very capable hands.

For tonight, Lovebug Hugs,
Lori

Events of the day!!!!

Little Bug did not want to go to bed last night...He was up until after 11pm. What a stinker!!!

Connor in his bed...but not wanting to sleep!!

Randy got creative with the way we set up Connor's sleeping quarters. We hung a blanket up with wall tacks to create a barrier so he sleeps in front of the bathroom area and he can't see any light from our area. We played his nighttime sleepy CD from home to make him feel comfortable...let's hope he konks out before 11pm tonight!!!

Just before heading out to the skyway to our appt.

In the hallway outside our appointment area. Mayo Bldg. floor #9

Mama's filling out the book of information on me....WOW...there's a lot she has to talk aobut with the doctor.

Daddy and Connor found an old antique scale....I think Randy's surprised how much Connor has grown...Mama wouldn't even go near the scale...She says posting all these pictures has renewed her energy to drop the baby weight!!! Hee Hee

Daddy and Connor playing in the waiting room before the big appointment.

Here we are waiting for the doctor to arrive in my examination room.

Here we are in the new pediatric floor waiting for the x-ray technician to come and get us.

Mama does a good job of undressing me quick for all these things...

Don't I look cute in my paper outfit!!! Hee Hee...I'm so silly!!

Happy family waiting in the X-ray waiting area.

I'm done with my X-ray and I get to get back in my own clothes...Let's go back to our hotel and play now.

Well, that was my day today. Daddy and Mama are still frustrated with the process here, but we're gonna do our best. Tonight I am fasting after 8pm so I won't get my tube feeding through the night. I will go into the hospital Tuesday at 9am for what's called a gastric emptying study. It will take about 7 hours of x-raying every hour and a half. We'll let you all know how it goes.

We've met lots of people that we need to be praying for. Peter and Wanda need our prayers as do our new little friends Hannah and Addison. We also met a little girl named Anabell that stole our heart. She's a cancer patient and she's so cute. Everyone here has a story and they all need our love and prayers too.

Lovebug Hugs,
Lori