Tuesday, September 6, 2005 - Day + 68 (if I did my calculations right!)
It's been quiet here in the apartment. Days have gone by with no significant changes to Frankie's health. We have started to venture out a bit more to avoid cabin fever, but there is only so much we can do when we do venture outside. Luckily, Frankie does well with his mask (meaning, he keeps it on, for the most part).

The other day, we went to the Sara Duke Gardens, but it was so hot, we only stayed about a half an hour. It was hot enough for Frank & I, but poor Frankie had his heavy green mask on, which made the outdoor adventure more miserable for him. Yesterday, we went to Wal-Mart and today we actually drove a bit further away to the Southpointe Mall!!! If it weren't for the huge Barnes and Noble store, I think Frankie would have freaked out. Fortunately, on the second floor, there was a Thomas the Tank Engine track set up with a bunch of trains for him to play with while I browsed the store.

Okay... quick quiz, folks! What is my biggest fear??? My nieces, Victoria and Catherine, can answer this one in a heartbeat! My biggest fear is spiders. And, they grow them big and built for speed down here. In the past week, Frank has killed two in our apartment and I sprayed one to death today. Please click on this link to see what I'm talking about. And, if anyone can identify this spider, please let me know (cynthia@frankiepants.com). Our main concern is Frankie and if he gets bit by one of these arachnids. The brown recluse spider is indigenous to this area, but I don't think that's what this spider is. Also, when you click on this picture, note that this spider from creepy leg to creepy leg is roughly 1 1/2 to 2 inches in length and probably about 1 to 1 1/2 inches across. The one I sprayed today was sitting next to Frankie reading him a book... kidding... sort of.

It was another sad week last week for the unit. One of the little girls from 5200 passed away. She had been in the PICU for quite some time, and unfortunately, did not make it. Her name was Maddy, nicknamed Queen Maddy. I just recently got her web site link, but didn't want to add her link without her parents permission. And, well, now is not the time to be asking them, so, just please say a little prayer or two for this precious little girl. Her parents, Richelle and Joe, were always on the unit, cheering Frankie on in the hallway. Our hearts go out to them and Maddy's brother, Ethan.

On a completely different note, our friends, Mark and Brenda visited us last week. Mark just bought himself one gorgeous vehicle!! And, I was lucky enough to get the opportunity to get behind the wheel. I'm so happy I can drive a stick!!! On the Pictures page, I have a couple of shots of the Mustang.

Tomorrow, Wednesday, we're back to the clinic. Frankie's Cyclosporine levels have been all over the board, so I'm curious as to what they'll tell us tomorrow. And, now as I'm reading this page, I realize how scattered my thoughts are... We were going to go to clinic yesterday because Frankie's site dressing had to be changed, and we usually need two people to hold him down while a third person changes the dressing (the taped covering that goes over the tubes "lumens" that come out of his chest). It's not an easy job, that's for sure, but Frank & I managed to change Frankie's without too much trouble. I basically had to hover over his legs, pinning him down, while Frank held his arms. In that position, I was able to remove the old dressing, clean his sites and apply the new dressing. For an outsider looking in, it probably looked like (and sounded like) we were torturing our child. But, I'm sure the other PBMTU parents reading this know exactly what I'm talking about and understand it's just what has to get done. Sometimes, it ain't pretty.

Frankie started both Speech and Physical therapies last week, and has his first Occupational therapy appointment on Friday morning. It takes him a bit to warm up to the therapists, and it's difficult to schedule appointments when I don't ever know when he's going to nap. We can only hope that some of this starts to sink in with him.

Since not much changes for Frankie on a day to day basis anymore, you'll probably find that my updates will be further apart. Please don't take this the wrong way, it's just that I get burned out easily, and I'd rather update you on interesting stuff, than just filler. So, if you see that I haven't updated in a while, it's because things are going well.

Monday, September 12, 2005 - Day + 74 around 4:30pm
Okay, so the results are in... it's a male wolf spider. The female spiders are bigger and furrier, if anyone was interested. So, I'm thankful, in a sense that it is the male of the species.

I'm sorry I haven't updated the web site in a while. We don't have internet connection at the apartment, unfortunately, so all of my updates have to happen when I'm at Duke as they provide wireless internet access. This also affects my sending and receiving emails. So, I'm not ignoring anyone, I just am unable to download and respond to emails as quickly as I would like.

Just a quick note, since I have the ability to update right now... there is an ice cream social in North Haven at the Cold Stone Creamery (Target Plaza) tonight from 6:00pm to 9:00pm. A portion of all proceeds during that time frame go to Frankie's fund. Also, some of my fundraising family will be there actually preparing your ice creams!! What fun!

As for the updates on Frankie's health... he's doing okay. He had a higher than normal temperature last night, but after a call to the unit, we were told to monitor it. If it spiked again during the night, we were to bring him in. Fortunately, his fever regulated itself (without having to give him any type of fever reducer).

His GVH rash on his legs is starting to reappear as well. So long as we keep it under control, there's no huge concern. So, we have two prescription creams that we put on his legs three times a day. Thankfully, he just thinks I'm putting body lotion on him, so he's pretty receptive to that.

We dropped off another urine sample today to see if Frankie is still showing positive for the CMV virus. If the urine tests negative, we will be off of contact isolation (FINALLY)!!! However, if it comes back positive, we will still have the pleasure of dressing up in the yellow gowns and gloves when we are at clinic. FUN.

I'm trying to remember if there's anything I'm supposed to write (based on the emails I've received and can remember at this point in time). And, my memory is failing me right now. So, forgive me (again) for neglecting anyone out there... trust me, it's not on purpose!

Our next visit to clinic is on Wednesday, so I should be able to update the web that day, too. Hopefully, I'll be able to tell everyone that we're off contact isolation! That would be so very nice! Until then, BIG HUGS!!!

Wednesday, September 14, 2005 - Day + 76 1:00pm
As all of you may know already, the spider dilemma has been solved. But, I forgot to thank all of the people who emailed me information. So, for all of those wonderfully informative emails, THANKS!!! But, that's probably the most I'll ever want to know about spiders! I even got information from a friend of the Entomology Department here at Duke. Again, I'm amazed at how small the internet makes this world.

Right now, we're hanging out at the clinic watching Barney as Frankie's getting his IVIG (immune system boost). He and daddy are lounging on the hospital bed, comfy as could be. I just ran down to the cafeteria to get Frank & I coffee, so all is right with the world. We're just hoping Frankie will nap soon, because he has Speech Therapy in a couple of hours and it's best if he's not sleeping through it, or grumpy, for that matter.

For those families that check my site, I got word that there will be a group memorial --rememberance for all of the 5200 children-- tomorrow (Thursday) at 3:30pm in the Connection.

Today, we saw a bunch of kids in clinc that we're so happy to see already outpatient, Adam, Zoey, and Haley. Congratulations to all of them for getting discharged!! I feel so out of touch, not having internet access. I only get my updates once a week, unfortunately. So, please know that when I do get access, I'm checking up on everyone and checking my emails.

We recently had to change our Cyclosporine drug to FK-506. This drug suppresses the immune system to prevent Graft vs. Host. The Cyclosporine wasn't absorbing into his system well enough, so hopefully the FK-506 will do the trick. And, yet again, we are following in Jessie's footsteps, it seems! :) Plus, she's in the room next to us right now, so Dr. Paul has just remarked that this must be the Sanfilippo corner today.

Wednesday, September 14, 2005 - Day + 76 4:00pm - a little time passed before I could continue writing so look below for another earlier entry I wrote today.
So, we're now back at the apartment and both Frank & Frankie are napping. Frankie has been waking up during the night and is wide awake for at least three hours, so it's necessary for the parent that gets up with him to nap during the day as well.

The visit at clinic went well. Frankie is progressing fine. With the change from Cyclosporine to FK-506 yesterday, we just have to monitor him a little more closely for any side effects that may arise. Hopefully, there won't be any. One good side effect of the FK-506, is that there doesn't seem to be any dark hair growth as there is with the Cyclosporine. Frankie was just starting to get the mono-brow and facial hair that comes with Cyclosporine. Unfortunately, with FK-506, it affects the pancreas more, so this will be monitored as well.

Next Wednesday, Frankie is scheduled to have his double lumen removed. He will still have his single lumen for his IV medications and TPN, not to mention the blood draws. This is both very exciting and scary, for me, at least. It's just one more step back to normalcy.

Many people have emailed both Frank and myself, asking what they can send to Frankie. Honestly, we have more toys here than we know what to do with. He has numerous DVDs and VHS tapes than we can count. While we appreciate the unbeliveable kindness so many have you shown, what we really would like are prayers, good thoughts and wishes to come his way. He is not out of the woods yet, and I cannot stress enough to people that even though there is a procedure (the transplant) for Sanfilippo, there is no cure. We are still unsure if the transplant will allow Frankie to mentally develop beyond toddler comprehension/expression.

Wednesday, September 14, 2005 - Day + 76 4:00pm - Third entry... i forgot something!!
Sorry... I forgot to let all of you know that Frankie is off contact isolation! woo hoo!!! And, for those of you that are worried about us and the weather down here, the most we're expected to get in Durham is heavy rains and wind. We're okay.

Monday, September 19, 2005 - Day + 81
So, this morning, we've already drawn blood, dropped it off at the North Pavilion, stopped at the local coffee shop, gone to clinic and it's not even 12:30pm! Frankie was up early this morning - 5:30am, and it was my morning to get up with him. Thankfully, I was somewhat well rested, so we just hung out with each other and watched some videos and played on the floor before attempting breakfast and morning medications.

Still, he's not eating all that much. He had a handful (his hand) of Cheerios, but drank more of his high calorie drink than I expected, so that was good. His enjoyment with taking his oral medications hasn't changed, in fact, he's become more difficult. I'm not sure if he was just not feeling well this morning, or if he's just sick and tired of getting five oral syringes thrown in his face three times a day.

At clinic this morning, the nurse practitioner had told us that his hemoglobin looked "funny". The level was was very low (6.6), so she wanted to have him retested. If it comes back still below his target range (8.0), we will have to go back this afternoon for a blood transfusion. He hasn't had one since August 29, so he's probably due. The low hemoglobin rate would make him look really pale and he would act tired... both of which he has shown over the past day... so, I'm predicting that we'll be back at clinic this afternoon. The only bad thing with the transfusion, is that it takes roughly three hours to drip.

Tomorrow, we have a day off, so we are planning at this point. Then, on Wednesday, Frankie's scheduled to have his double lumen removed (one of his chest catheters). This will be done in the North Pavilion, and should be a relatively short procedure. I believe the longest time will be Frankie going under the anesthesia and then coming out of it. We call tomorrow afternoon to schedule the time of the procedure. Hopefully, we'll get an early time, so the day is not completely wasted. He has a rough time coming out of anesthesia, but I think all little kids do... they open their eyes, feeling groggy and pretty much all-over crappy, with no familiar faces around when their eyes first open. Settling Frankie down at that point takes a long, long while.

So, with surgery planned for Wednesday, that pushes our "doctor day" at clinic to Thursday. We may be able to see some of our 5200 friends, which I'm excited about. I haven't spoken to or emailed anyone in a while due to the issues I've been having with internet access. I've even been out of touch with getting their updates, so I'm hoping to have some time Wednesday at Duke while Frankie's in surgery.

In the meantime, to all of our friends at and from 5200, we're thinking of you and sending our continued prayers and good thoughts your way!!! We miss all of you and hope to see you soon!!

Tuesday, September 20, 2005 - Day + 82
Nothing has really changed today, but I had an opportunity to upload something, so I decided to write today.

Frankie's been a bit ornery for the past 24 hours. I'm not sure if he's sick of us, seeing just your parents every day can wear on even the most devoted child, or if he's sick of his medications, the non-changing scenery, inability to go outside without a mask on, etc... It's just becoming increasingly difficult to get him to do anything, especially eat. He definitely shows interest in food, but when you give him some, he either crumbles it up in his hand, tosses it on the floor or spits it out. He's a real treat at the dinner table, that's for sure (insert sarcasm here).

But, that's not to say he doesn't eat at all. He loves to lick the butter off of anything, especially salty crackers. And, we can usually get him to take a couple of mouthfuls of jarred baby food (slight steps backward, but trust me, it's a savior some nights) or yogurt. He doesn't really have a favorite, but he really likes one thing one day, and completely despises it the next. For a while, he was eating Roasted Red Pepper Hummus (no joke). But, as soon as we bought it by the gallon, it was no longer fit for his pallet.

Frankie's Vitamin K level was slightly low from yesterday's blood draw, so he has to have two doses today. The importance for this vitamin is the ability for the blood to clot. And, seeing as he will be in surgery tomorrow, we kind of want his blood to clot (again, insert sarcasm here). We took a trip to the pharmacy to pick up the doses (roughly two hours ago) and I just looked at it. It was supposed to be a liquid dose. Unfortunately, the pharmacy gave us two tablets. So, I'll have to cross my fingers, crush the tablets and hope Frankie will not spit out or vomit up the vitamin. I'm actually feeling pretty lucky, right now.

Since we've changed his Cyclosporine to FK-506, we've increased his FK dose from the original 2.0ml Q12 (that's every 12 hours for those of you who haven't spent months in the hospital) to 6.0ml Q12. His level is finally within his target range. From yesterday's blood draw, it was 12 and they were hoping for a number between 8 and 15!! Unfortunately, that doesn't mean we get to go down on the dose amount... at least not yet.

All of Frankie's other vital counts are holding nicely. Yesterday, I thought we may have to go back to the hospital for blood, but the hemoglobin count came back normal (for him), so no transfusion necessary last night, thank goodness!! Honestly, it would have sucked to have to go to the hospital so late in the day for a three hour drip... a three hour drip.... sorry, couldn't resist.

Please continue to visit my friends at 5200 from the links on the right. They all need good thoughts, wishes and prayers to help them through. There are so many others, too, that I have written about, but do not have links for. Each child has a special story and a special place in our hearts. Take care of your little ones, they need to know you love them every day, regardless of what they say or do.

Oh... and I heard that the fund raiser last night at Geppi's was a lot of fun! I wish I could have enjoyed the food and the people!!! But, I'm afraid the food would have been too good to stop at one serving! That being said, Frank & I are back on our diet. I know most of you may be rolling your eyes, but trust me, we have gained weight down here, enough to make us feel yucky. And, as I will be turning 34 this week, I feel my age is finally catching up with me. My hair is falling out and the remaining strands are turning a lovely shade of gray. My hands look like someone who actually does hard labor. I tried giving myself a manicure last night, but now my pretty nails look so odd on my dry wrinkly fingers. I won't even attempt a pedicure at this moment in time. I may have to call in a professional for that miracle.

Okay, enough blabbing... sorry. To that end... Big Hugs from us!!!

Wednesday, September 21, 2005 - Day + 83
Good afternoon!

Frankie's surgery this morning went very well. In fact, it went by so quickly, I didn't even get one sip of coffee before the doctor came out and said Frankie was in the recovery room! The procedure to have the double lumen removed is a very simple one. It did not require any invasive cutting, so that's a good thing. We left the apartment this morning around 7:15am and were home by 10:15am!

On past occasions when Frankie has been anesthetized, he's had a hard time regulating his oxygen. This morning, when we went back to the recovery room, he was still sleeping. With the oxygen mask near his face, his saturation levels were perfect. So, we decided to move the mask away from him, and he still maintained 100%!!

Slowly but surely, he started to stir. I was afraid that he was going to freak out at any moment, but he sat up, grabbed his Thomas train that Frank put in the crib and started playing with it. He only got upset when I tried to put his socks on. After we got him some juice and he started to drink it, the nurse turned to us and said we could leave. NICE!!! I'm still in awe of my little boy. Every day he amazes me with his strength.

Tomorrow, we'll be going to clinic for our normal weekly check-up and Frankie's speech therapy. I think the clinic day may be longer than normal because we only have one lumen to administer drugs. So, if he needs more than one tomorrow, they'll have to go one after the other. Prior to today, we could run three drugs (if necessary) at once. More efficient, but having the double lumen removed brings us closer to home.

PS.... Guiness Gulp tomorrow night at the Half Door in Hartford!!! See Fundraising page for details.

Thursday, September 22, 2005 - Day + 84
Clinic went well today. Frankie woke up around 4:30 this morning, so he and I sat in the living room and played with his train set and read some books for over an hour. Then, I gave in and put the TV on so I could lay on the couch with him until his TPN finished. At 8:00am, I disconnected his TPN, pulled his blood and woke up Frank.

While Frank dropped off the blood and got me my coffee, I gave Frankie his morning medications and started to get him ready to head out to clinic. We arrived there around 10:30am and were there until around 3:30pm. Frankie had a couple of drips and Speech Therapy today, so it took a bit longer. Plus, we also had to change his dressing from yesterday's procedure and decided to do that in the clinic.

Our weekly meeting with Dr. Paul went well, too. One of Frankie's blood pressure medications has been reduced from three times a day to two times a day (from Q8 to Q12, in medical lingo). But, we've added another medication, a steroid, to stimulate Frankie's appetite. He's not eating enough, roughly 200 calories a day, so hopefully, this drug will help him remember how good food can be. Fortunately, this steroid does not produce the "grumpy" temperament that other steroids can. It also doesn't make him bulk up or bloated, either. And, it takes a few days for it to start working. I'm hoping by next week that he'll be back to his food-loving self.

Ever since Wednesday, when his double lumen was removed, his personality has perked up. I'm not sure if it's because it was removed, or if the thrush he had in his throat was going away. But, either way, it's nice not to have to wrestle him so much while attempting to give him his oral meds.

We saw Michael and Mary today at clinic. They get to go home-home tomorrow! Congratulations to Michael!!! We're so happy for them. We also saw Michael Patrick, Jean, Alison and Kate today. Everyone looks so great in clinic! It's wonderful to hear good news and see these children progress. There are other children that haven't been so lucky. Please continue to say prayers for these children. I just heard that AJ has gone to the PICU. This is not a good sign, but he's a fighter. Stay strong, AJ!!! Asher is also having some difficulties. And, every time Benjy gets close to getting discharged, something gets in the way of him and the 5200 door. Please continue to send prayers their way as well.

Tonight is a Guiness Gulp Fundraiser in Hartford. My sister, Marie, called me as she was headed there. I can only imagine what a blast this is going to be! I'll have to stop by this establishment (The Half Door) when we're back in CT.

Take care, all. Big Hugs!!!

Friday, September 23, 2005 - Day + 85
Happy Birthday to me! :) Okay, normally I'm not one to announce my birthday, but I've learned to appreciate my life more and more over the past year. And, even though it's not even 11:00am, things have already been busy in our apartment.

I was able to sleep in (7:30am) before being woken up by Frankie's smiling face at my bedside. It's such an incredible thing to see, his smiling face. Frank made me breakfast while I opened my presents, and then we were off rushing around the apartment getting ready for Frankie's Occupational Therapy visit, scheduled for 9:00am.

Now, Frankie's napping, resting up for his Physical Therapy appointment at 1:30pm and Frank is out grocery shopping for my birthday dinner. So, I'm able to get a little time to myself, which is nice.

Early this morning, I recieved a birthday card from my work back in CT. Thanks, all! My supervisor, Andrew, just got back from his honeymoon in Hawaii! I'm so jealous!! That's one place I've dreamed of going. I have an old friend of the family who lives in Oahu, so I'm hoping to save up for a trip out there with Frank & Frankie. That would be awesome!!!

I'll write more later. But, for now, Frankie's resting peacefully, and he's doing great! We are one of the truly blessed and lucky families here. We have the love and support of our dear family and friends, not to mention the wonderful people we've met along the way. Thank you for your continued prayers for our little boy... they work!!!

Monday, September 26, 2005 - Day + 88
A dear sweet boy became an angel yesterday. Asher had just turned one in August (his link is to the right). He was diagnosed with MPS I (Hurlers Syndrome) and underwent a transplant in July of this year. It is with a tremendously saddened heart that I write. We met Cindy, Ron and Asher when they first came to the unit. Cindy made some incredible brownies for Asher's first birthday... which unfortunately was "celebrated" by his being transferred to the PICU, out of 5200. He came back to 5200 for a short period of time, only to return to the PICU for the remainder of his life. He has two older sisters that love him and miss him terribly, as do the rest of his family and friends.

Until you are a parent confronted with your child's disorder/disease, you will never truly know life on 5200, an experience I would not wish on anyone. Frank and I are constantly reminded of how lucky we are that Frankie has been discharged off of the unit. When we first came down to Duke for the work-up, we were told the odds of success were 80% survival. At the time, that seemed pretty good. When faced with the decision of letting the disorder progress and slowly deteriorate our child, we realized there was no choice, the decision had been made without saying a word.

Looking back, 80% sucks... Because, there's still a 20% chance of suffering a loss. Twenty percent is no longer a number. Twenty percent has a name, a face, a father, a mother, siblings... Twenty percent was Frannie, Jana, Queen Maddy, and now Asher... These children had smiles and laughter in the face of horror. They were resilient and strong beyond anything any adult could muster. And, unfortunately, despite their efforts, despite the fight in them and the prayers that surround them, we have had to say goodbye too many times.

Please know that your prayers are appreciated; your positive thoughts and support can never be too much for a family in need. I'm not just talking about everything that people have done for Frankie, Frank and myself. I'm directing this toward every child that needs a miracle. Right now, there's a couple of little children, I know personally, that could use a ton of prayers... Emma, AJ and Benjy.

Frankie is doing fine. We are one of the lucky families, so far. We are making strides to come "home home." Every day we spend with our son, is a day we will cherish for the rest of our lives. His smile makes us melt. His laughter and sense of humor amazes us.

We have clinic on Wednesday, and should be getting a schedule of our 100-day evaluations... yet another step toward home. I will write more about that when I have more information. In the meantime, please take a moment to say a prayer to all of the children you know that could use that positive thought.

HUG YOUR CHILDREN! TELL THEM YOU LOVE THEM EVERY DAY! I saw that on another family's web site and couldn't agree more!

Tuesday, September 27, 2005 - Day + 89
Everyone, please pray for Emma. She is in desperate need of a miracle. She just turned one year old, and used to be Frankie's neighbor on 5200. The doctors at Duke couldn't do any more for her, so she and her family left Duke a few weeks ago. In their hometown of Charlotte, she is being taken care of by the doctors in the PICU there. In reading her mother's update from today, it appears that prayers are needed now more than ever.

Peace and love to everyone! Pray for a miracle for Emma tonight.

Thursday, September 29, 2005 - Day + 91
Slight warning on entry below... be prepared for my venting....

So, Frankie began his 100-day evaluations yesterday. This will continue through next week and possibly into the week following, depending upon how the doctors are booked for appointments.

Hopefully, yesterday's start will not be indicative of how the rest of the studies will go. It was a hellacious day yesterday that started at 9:30am when we left the house until roughly 5:30pm when we returned home. Okay, so technically, it was just the morning that truly sucked, but because of the morning, we were at clinic for our Doctor Day so much later than we usually are.

We had a 10:00am appointment for a pulmonary study on the second floor of the Children's Hospital. So, we checked in on the second floor, they took my copay, and we were told to sit down. Now, we also had an 11:00am appointment to make in the main hospital on the seventh floor. So, when we weren't called in by 10:30, I spoke with a woman at the desk and told her that I was concern we wouldn't make our next appointment. She proceeded to tell me that everything was okay, and not to worry.

Another half an hour went by... and still, they hadn't called us. It was now 11:00am, the time for our next appointment (Echocardiogram). Frank went to the registration desk and asked again what was going on. It was only at this point in time that they felt the need to tell us that we were supposed to check in on the fourth floor, have Frankie's height and weight taken, and then come down to the second floor to have the pulmonary test done.

Okay... for those of you who have always commented that you've never seen me angry... you missed your opportunity if you weren't on the second floor of the Children's Hospital around 11:00am. I wasn't brutal, but I was angry, and everyone around me was aware of it.

After my mini-explosion, Frank took Frankie in back to have the pulmonary study done while I went to the fourth floor to sign in. We had already had his height and weight from yesterday, so they really didn't need it for this test. But, apparently, I needed paperwork for both of these studies before anyone would know we were even there. Apparently, taking my copay at the time of sign-in still renders us invisible.

While up at the fourth floor, yet again expressing my displeasure at the situation to Karla, the Chaplain we met on the unit, and Matt, Jessie's dad, Frank appeared. The pulmonary studies that needed to be done (and that we waited over an hour for) took only 2 minutes! Go figure. So, we headed to Duke North's seventh floor for the Echocardiogram... twenty minutes late.

After waiting another 45 minutes to be seen for this test... mind you, there's a big sign that reads: if you have not been seen within twenty minutes of your arrival, please bring it to our attention... or something to that effect... we were finally on our way to the clinic (back on the fourth floor) for Frankie's Doctor Day.

We are normally at clinic for Doctor Day around 10:00am... we arrived there this Wednesday at 1:30pm. We also had Speech scheduled for that time, so when Barron showed up, we set him at ease by telling him we just got there, too. Sometimes, I think he feels like he's keeping us there, since we're usually wrapping everything up by the time he can get to clinic.

To add insult to injury, my company did not file my COBRA application when they said they would. I was waiting over 3 weeks, paying everything out of pocket (NOT CHEAP, mind you), relying on COBRA to take over on September 21st. When the prescriptions were still not getting covered on the 23rd, I called my company. Basically, I got this... "Woops, sorry".... WHAT??! Okay, so another moment of me expressing my displeasure by yelling on the phone. What was their defense? A computer glitch. I work with computers, my husband works with computers... computer glitches happen because of the people sitting between the chair and the keyboard. The only way they would know that there was a computer glitch was because I called and questioned them. There is no double check on their side to make sure that all paperwork is being properly processed.

To put things into perspective... one of Frankie's daily medications, his nightly nutrition, costs roughly $2000.00 A NIGHT. Okay... who in this world, in this situation, has $2000.00 DAILY, to cough up??! Uh, not us, that's for sure. I have now been told that they only process these applications every two weeks! So, they won't even process my application for another week, at least. Then, it takes my insurance company another 7-10 business days to process the COBRA application on their end. We're talking probably another month of us paying for Frankie's medications out of pocket. I shudder at the thought. Rest assured, I'm making some SERIOUS phone calls tomorrow.

Thankfully, COTA is working with us to pay for Frankie's medications. I couldn't imagine not having them around to help us in this time of need. When you're trying to take care of your son's life, the last thing you want to worry about is money. Many thanks go out to Jackie and Rick at COTA for working with us.

PS... a lot of fundraising events coming up... Golf on Saturday, Dinner on Thursday, and a parade on Columbus Day....