Say it isn't so........

This has to be short and sweet because I am typing one-handed. OK, let me explain...briefly! We had a wonderful time in Maui and it was just the relaxation and fun that the doctor ordered!! What the doctor didn't order was the hand injury that I came home with. I was snorkeling one day (toward the end of the trip) and found myself being dangerously tossed into the reef by the crashing waves and changing currents....when all was said and done I got cut up by the coral reef and my hand got smashed into a black sea urchin. I had 117 quills/spines in my left hand. I had one night in the ER in Maui and 3 doctors appointments back home and it's not getting better. The swelling has increased in my left pointer finger and the hand is now in a cast. I saw an orthopedic surgeon today and the final verdict is surgery. I go in tomorrow at 10:30 am for full sedation and hand surgery to remove the major culprit in the tendon center of my hand and to repair the damage. I'll be down for about 3 days with pain meds and then in a cast for 10 days or so.

We are hopeful that everything will heal quickly and I can get back to the business of being a wife and mommy soon. Randy is taking a little time off to be home with me and the kids and Grandma Nanny will be close by as well.

Will post with updated info soon. Thanks in advance for your prayers!!!

Lovebug Hugs,
Lori

PS ~ The snorkeling was fabulous and I had the chance to swim with turtles....Too fun!!!!!

Fevers, sniffles and colds all around...

Well what a bummer. We are 6 days away from leaving for Maui and all three kids have fevers, sniffles, watery eyes, and colds. I feel like I am coming down with the same stuff. Yuck! I should be thankful that it isn't the day before we are leaving and we just come down with it. We have 6 days to let it run its course around here. How I hope and pray that Randy doesn't come down with it. He just left today, but Connor's had his fever for 2 days now. I'm glad that the majority of errands have been accomplished for our trip and the last minute things shouldn't take more than minimal effort.

Say a prayer that we all get over this soon.

Lovebug Hugs,
Lori

Here's what we're up to...

It has once again been far too long since I made an update about family life here at the Robertson's. Spring has definitely sprung around here. Randy was able to get our little garden prepared and planted during his last time at home for a few days. Now we just have to feed, water, fertilize and wait for the bounty!! Mackenzie had a great time being a gardener with Daddy. She is our outdoor girl. When she wakes up in the morning it's the cutest thing to go in and get her. You'd think there would be a greeting of Daddy or Mama, but no, it's usually the word "Outside" with the inflection of a question mark at the end. It's so cute. The moment she's awake she wants to go play in the dirt and plink around the yard.

Connor is involved in 3 therapies during the week. Monday's is a big day for him. He has physical therapy here at home with his new school therapist, Matt. They are getting along beautifully. He is genuinely excited to see Matt on Monday's. They've been working on a really neat platform swing that Connor loves. It is really working his core strength and you can tell he is working hard when you see him on it. Connor is sidestepping along the couch and other surfaces as well as pivoting his strength to turn corners and go in the opposite direction. This is a huge accomplishment for Connor. He was fitted for new orthotic shoes a few weeks back and we have just received them last week, so we are now working ourselves up to wearing them every day!!! Monday's are also academic days for Connor. His preschool teacher comes for 1 hour to work with him on educational goals. Right now, they are working on concepts such as in and out and cause and effect type of play. Connor enjoys his playtime with Teacher Noell.

Connor is also involved in occupational and speech therapy on Thursdays. Natalie and Katie work with him on his fine and gross motor skills while trying to incorporate sign language. There is a lot going on in those sessions which I think can be very frustrating for Connor, so we are not seeing progress in this department at present, but we press on. I think Connor's favorite day of the week (other than the days Daddy comes home) is Wednesday because that is when we get to go visit Erica and do one hour of pool therapy. He loves Erica and he loves the water. Splishing and splashing and kicking are a big hit with him. He is doing well with the therapy. It is not swimming lessons, so he isn't learning to swim. He is being challenged in his muscle strength and leg coordination in hopes that we will begin walking skills soon. He is progressing nicely in this area.....Remember, he marches to the beat of his own drum, so the timing may not be perfect, but, as I always say, "He's getting there"!!!

I have mentioned over and over and over again on this blog that we remain frustrated about the feeding/nutrition situation with Connor. He is still not taking any food by mouth. He is exclusively fed through his g-tube. We are becoming increasingly concerned that we need to push him and challenge him to eat by mouth. We try suckers in his mouth to give him a good experience and he will still have nothing to do with it. How we wish for the day when Connor will eat by mouth. This remains a struggle...a big one!!!! Enough said!!!

Alex is just as happy as ever. He has a ready smile as soon as you catch eyes with him. He loves to play and eat!!! He's the chunkiest of all our kiddo's and we just love the sight of that little baby fat on his legs!!! We always say, we could just eat 'em up!!! He is sleeping wonderfully with his brother in the "boys" room. They do so well together. Neither one wakes the other up. It is a great situation, and I can now count on them sleeping through the night, which is wonderful for this mom who needs her rest. Still no teeth yet, but Alex is working really hard on cutting those first bottom teeth. He loves rolling around to get to his toys...no crawling yet, but I think we could be getting close. He babbles all the time and I've even heard him mimick, Mama...but don't tell Daddy!!! At 7 1/2 months Alex is starting to exhibit seperation anxiety. I never really sensed this in either Connor or Mackenzie, but Alex is another story. As soon as he sees you leave his sight, he gets pretty teary eyed. And then, as soon as it started, he is happy again as soon as he sees me. I hope we can help him navigate through this time of finding some independence. No matter what, he is such a joy and makes our days fun.

Randy and I are anticipating a wonderful trip coming up in just a couple weeks. Mackenzie will have the fun opportunity to be in her first wedding....in Hawaii!!! Our niece, Lindsay is getting married on Maui. Kenzie will get to be one of the flower girls and will get to walk down barefoot in the sand on flower petals. What fun!!! So, Randy and I and Kenzie will head out to Maui on May 19th and will have a week of fun in the sun!!!! This will be a great time for all of us to be together, rest and play!!! Grandma Nanny & Pop Pop will be staying with the boys so they will have a fun treat as well getting spoiled by grandparents. We are blessed for their willingness to stay with the kids so that we can have this fun time. There are many preparations to get ready for, but it is all fun stuff. However, I had really wanted to drop this pesky baby weight before the trip....no such luck....I have some work to do to get back to the real Lori!!! I need to step up my commitment to looking and feeling better.

Anyway, that is what's going on around here. Hope all is well in each corner of your world, wherever that may be. If I don't have the opportunity to post before we leave on the 19th, rest assured I will post when we return from Hawaii. You can see I've changed the way the blog looks a little. I guess I thought it was time for a change....It's kinda like changing around the furniture at home, Ha Ha!!! You can continue to view everything the same way as you used to. Please continue to leave us comments when you visit. We LOVE to hear from everyone, some days, it's just what I need. You can also let us know your reaction by checking the appropriate box....praying for you, funny or love it!!! Just thought I'd have a little fun with some of the gadgets that are available to this blog. Thanks again for visiting. You all play a vital role in our family and were thankful for your commitment to visit us here on the blog.

Lovebug Hugs,
Lori

Here's a selection of various Easter, Birthday, Outside and Professional Pictures


The Kids Easter Baskets...Connor (left end) Mackenzie (middle) Alex (right end)...Spoiled little bunnies!!!



It's my very first Easter everyone!!!



Ok, has everyone seen the movie "A Christmas Story"? I know Mama didn't put me in a pink bunny suit....but this is comin' real close guys!!!!!! What were you thinking Mama????



Hey, these bunny ears aren't so bad. I think I like Easter grass!!



You mean I have to start learning to drink from a sippy cup now??? Rats, I love my BaBa!!!



Why is it then when Mama leaves the house....even if it's just for an hour or two....dirt and mud seem to quickly follow????



Getting dirty with Daddy!!!


Making mud puddles...



I just have one question here....Is Mama gonna find out about this????


There's our sunshine girl...Thanks for the pretty sunglasses Auntie Maureen... I wear them every day to get ready for our big airplane trip to Hawaii!!!



I love to chew on my toys!!!


Alex snuggling with Auntie Marsha at the big family birthday party....I was pooped out!!! Thanks for the snuggles and lovies auntie!!!


Connor and Daddy opening presents....Hey Grandpa & Grandma...I love my new set of sports balls. They're really cool!!


Playing with Daddy and my new basketball!!


Mackenzie's 2 Year Portrait!!! Isn't she a big girl. She got to be all dressed up and we even curled her hair with a curling iron for the 1st time. She definitley had the beauty treatment.


Sitting pretty and smiling like a good girl!!!


Being a cutie pie!


I think she really had fun at her photo shoot!!! We got lots of good pictures. Now it's Alex and Connor's turn for their next professional pictures. We'll post them as soon as we get them back.


Lovebug Hugs,
Lori

Easter Pics...

Just a few pics of Easter Egg coloring....Will post more pics soon. We'll be celebrating Easter tomorrow since Randy is home now.


My little funny bunny boy!!! 7 months old today...where does the time go?


Ready for dunkin' Mama!!!


Connor was not particularly into Easter Egg coloring this year. He was awfully tired, and I realized yesterday that he has 1 new little spot that the doctor thinks could be MRSA again. We're treating it with topical cream this time and it looks much better today.


Our little barefoot princess....Looking at all the colors....
Mackenzie turned 2 on April 2nd. It was her golden birthday because she turned 2 on the 2nd. We celebrated with a Mickey Mouse party and took her to Charlie's Safari....Just Daddy, Mama and Kinzie. I'll post pictures soon.


Who's the fairest bunny of them all....ME!!!!

Lovebug Hugs,
Lori

Insurance News...

I received great news yesterday from Blue Cross/Blue Shield about the coverage for Connor's feeding supplies.

Here's how it went down.....I had been calling daily to find out what the predetermination review results were and there hadn't been any news in days, until Friday when they told me that they had sent me out a denial letter for coverage of Connor's supplies and formula. When the woman told me this she was aghast at the fact that her company actually sent me a letter telling me I couldn't feed my little boy. As we talked she told me that she was the mother of a 3 year old as well and she just couldn't fathom being in our position. She knew there must be a way to find a positive result to the situation so we began putting our heads together and we came up with a plan. Throughout our conversation I told her that I had prayed before I even called that day and asked the Lord to give me favor with the company and to get a helpful and kind person on the other end of the line. I told her she was an answer to my prayers and she said, "Great...I'm a Christian too!!!" We worked on putting another letter together with procedure codes and diagnosis codes and prayed for the best. She said she would personally walk the letter over to the proper department and let me know the results. Yesterday she called me to let me know that the results were in and we had received full coverage for Connor's supplies. I feel so blessed that she was willing to help us in the process and the battle for our insurance compay to see the need for this.

So, the weight has been lifted for coverage and we can place our order without having to worry. We still have to meet the yearly deductible and if our out of pocket expense of $1500 is not met, then they will cover at 85%. Once our out of pocket expense is met (which it is for this year already....) they will cover at 100%. It is always up to a yearly review, but we are confident that with the help of the nice lady at BCBS we won't have any trouble .

So, there you have it....answered prayer. Thanks for all you advice and prayers on this issue. I am beginning to understand the insurance battle that so many of us face on a daily basis and I realize that not everyone gets good news all the time. My encouragement for those of you who might have similar battles is to never take no for an answer and keep trying. As frustrating as it is, keep calling and keep pushing. With the economy the way that it is, we can't be too frugal with our finances and with our precious treasures...our children. Find someone on the inside of your insurance company who can be your advocate on the inside and hopefully you will make progress and you will get good news as well.

Although we continue to have challenges, this is one I can cross off the list for the moment.

Lovebug Hugs,
Lori

The Results Are In...

This afternoon the phone rang and it was Connor's doctor with the results of the lab test on his staff infection....Positive for MRSA. So, it's official, he definitely has it. Now that we know for sure, I will begin the tasks of washing bedding every morning, sanitizing all toys every night, and try to keep him quarantined from the other kids as best I can. He is still in good spirits, however the antibiotic has given him a terrible case of diarrhea. Poor little fella!!!

So far there are no other signs of it on him or anyone else, so that is positive. Since he is highly contagious the doctor urged me not to take him or even the other kids out around other people for at least 5 days, if not 10 just to make sure we don't spread any unwanted germs around. So, we're home bound once again.

I am desperately seeking signs of life and springtime anywhere I can find it and today, just outside my garage door I saw my first Hyacinth of season peeking her little head out...I think she will be a pale shade of yellow from what I can tell of her shell. Thank goodness for beauty in the midst of illness.

Thanks for your much needed prayers. Our spirits feel lifted although the burden of sickness remains. Just a quick update on our insurance situation that so many of you have asked about. Friday when I called the insurance company they told me that they had just sent out a letter dated Mar. 20th that our request for coverage had been denied. YIKES!!!!! The woman on the other end of the phone was both compassionate and efficient in her effort to help me come up with a different plan. She told me that she was also a Christian and the mother of a 3 year old and she couldn't comprehend that her company was going to tell me that I couldn't feed my little boy. She assisted me in coming up with procedure codes that may be authorized, but the final word will come in on Wednesday of next week. Please keep praying that we receive good news on this situation. I still cannot comprehend trying to come up with and extra 4K per month for Connor's enteral (feeding) supplies. "WITH GOD, ALL THINGS ARE POSSIBLE."

Lovebug Hugs,
Lori

How I long for......

How I long for brighter days of sunshine and less days of dreary, grey rain. I also long for happier days where I can post fun updates about all the things the kids are doing and all the fun adventures we are on.

Unfortunately, today is not that day. I just returned home from the doctor with Connor and he has somehow contracted staff infection with a good chance he could have MRSA. He had been fighting an ear infection, that I thought was well under control until a couple of days ago when I noticed large sores in his left ear. They continued to become more red and irritated and so I took him into the doctor early this morning. The doctor was sure it was staff infection so we started an antibiotic. However, he also said that the appearance of the sores were consistent with the look of MRSA. He lanced one of the sores to get a sample to send to the lab to have it tested. We will know for sure by Saturday. If it is MRSA, then we will stop the antibiotic and start a specific drug that targets MRSA.

Needless to say we are praying that this is not MRSA. Our research indicates that MRSA can have tragic results, especially in children with a low immune systems and those who are medically compromised. I have promised myself to stop looking at the information until we know for sure, but I would be lying if I said I wasn't worried.

Connor is in great spirits and doesn't act like he's sick at all. He doesn't have a fever, which the doctor said was a really good sign. So, we will continue to pray for Little Bug's healing and we will pray that this will be a quick passing infection.

Lovebug Hugs to all,
Lori

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???