Kindergarten News and Summer Plans

As some of you know Roxie graduated from ESUCP on June 7th. We have an awesome cap and gown shot of her. And yes, we were the crazy parents with the video camera out. I realize it is only a pre-school graduation, but Roxie has come so far and gone through so much so to us it is an exciting milestone that deserved celebrating! Just the day before the graduation we met with Charlotte Mecklenburg Schools to determine Roxie's placement in August for Kindergarten. The meeting went much better than expected and ended with Roxie being assigned to Metro School, which is what we wanted for her. It is the only CMS school for kids with severe special needs. Otherwise she would have been in a special needs class (called a SAC class) within a typical school. We feel at this time she needs a separate setting that has as many resources and experts as possible and we felt Metro could offer this. They have all kinds of great resources, experienced & dedicated teachers, a respected principal, and even two indoor pools! We are so excited and feel relieved that this process is done.

Roxie continues to do very well. She's practicing her crawling every day and will even pull up onto her knees. She's doing much better in her walker and seems to really get that she can move around and shows excitement at her newfound ability. Roxie also is communicating more consistently, has been vocalizing more, and has a few new sounds. During the summer on weekdays and some Saturdays Roxie will work with Farrin (her CAP worker) at home. Farrin has been doing a lot of work with Roxie using switches, which could be a valuable learning and communication tool for her at school in the fall. One of Roxie's favorite summer activities is playing at the pool. She loves the water and will float around happily for a few hours. She even experiments with pushing up to stand as she floats around the little pool, which is less than two feet deep. Phelps and I think that her recent development may be due in large part to the CoQ 10 supplement she started taking in late February to help treat her Mito. It is so exciting and gives us hope!

Our summer is full of appointments for Roxie, both weekly therapy (PT, OT, Speech, and ABA) as well as appointments with specialists. Tomorrow she has her first appointment in nearly three years with Dr. Bugaiski, a Developmental Vision Specialist. He looks at how the eyes and brain interact. She'll see him again the following two Tuesday mornings and then we will get a report at the third appointment detailing his findings and discuss the possibility of vision therapy for Roxie. The first week in July Roxie will see another eye doctor, an optometrist -- the more typical variety of eye doctor who will look at her retina, cornea, ability to focus etc... And in just a few days Phelps and I fly to Indianapolis for the Mitochondrial Disease Symposium where we will listen to the nation's specialists and thought leaders on Mito. That is very exciting and we hope to learn a lot as well as enjoy a few nights away. Then in mid July we are taking Roxie to see Dr. Shoffner in Atlanta to finally discuss his findings face to face. He is the Mito specialist who diagnosed Roxie last November and we hope to find out more results from his DNA testing and perhaps discuss adding another supplement to Roxie's Mito cocktail. Roxie also has to have lab work done and I've already taken her in twice to have the blood drawn to no avail. The first time they didn't have the right tube for the CoQ10 lab and the second time she was too dehydrated and after what seemed like 10 minutes of holding her down while she sobbed they had to give up with only a small vile of blood obtained. I'll take her in for another try next week. Uggg!

We'll keep you updated as we get results and info from our appointments.

Roxie's New Skills

I wanted to post an update outlining what Roxie has accomplished in the past few months. Some of our friends don't see Roxie on a regular basis and several of you have inquired recently about what sort of things Roxie is up to these days. She turns 5 and a half in just a few weeks (her half birthday is her Dad's birthday) and she is growing in new ways and making impressive strides. And she's done it all since recovering from her illness and hospital stay in January. Not only did Roxie reach her baseline (her standard level of health and strength) as the doctors hoped but she has surpassed her own best.

Guess what?! Roxie can now crawl -- up to 6 feet on a regular basis and it is the cutest thing to witness. Just a few months ago Roxie could not crawl an inch and mostly rolled to get where she wanted to go. Now she will crawl 3 or 4 feet usually to get to someone and then she'll lunge up onto that person's lap. Sometimes when the girls are watching a show in our family room Roxie will crawl to the TV and press her nose against the screen, much to her sister's dismay. A sibling tiff often ensues in the form of McRae pushing Roxie out of the way while Roxie laughs hysterically. Watch out little Sis, Roxie's on the move!

And as some of you have recently seen in a photo (shown here), Roxie can now stand up when leaning against a wall for up to a minute and a half. And we don't mean that she is standing while holding our hands or with help from anyone -- which is why she isn't smiling in the picture. Standing is very difficult for her. Considering her profound hypotonia (low muscle tone) this is quite a feat for Roxie.

Plus since late January Roxie has eaten a normal diet. Before her stay in the hospital, she was on a sort of low GI diet, which was a step up from her ultra-restrictive Ketogenic Diet. Now she eats pizza, pasta, sandwiches, cookies, ice cream and lots more. And wow does she love food! She'll even feed herself using her hands, although this can get a bit messy.

But wait there's more ... Roxie also uses the potty every morning after breakfast and every evening before bed. We hope someday she'll be able to let us know when she needs to go but for now this is a big help.

As you can see Roxie continues to make strides. They may seem like small steps for a five year old, but each improvement or new skill tells us she is moving in the right direction. Roxie also has a new CAP worker, Farrin, who works with Roxie 3 or 4 days a week at our home. We hope this extra attention and reinforcement will help Roxie progress even further over the summer as we try to prepare her for Kindergarten!

Watching E.T.

Last night, Kate and I made some popcorn and watched E.T. for the first time in at least 20 years. It's amazing how different it was to watch it as a thinking, questioning adult -- seeing all the allegorical stuff and being very "intellectual" about everything -- versus as a child watching for sheer entertainment. About halfway through the movie, I realized that I wasn't deeply invested in it; I was pretty much analyzing the movie from afar, as a remote observer.

But like all classics, what makes them classics is their ability to reach audiences on a very deep, meaningful level. Classics hit on enduring themes: betrayal, loss of innocence, reaching common humanity, etc. As a somewhat emotional person and the father of a child with special needs, I tend to tear up in movies more than the average Joe. Little things tend to trigger some emotional response, and often I can't say why. With E.T., the reason was clear.

It happened when E.T. is dying and Drew Barrymore's character, Gertie, is shown standing alone watching the doctors rush all around E.T. trying to save his life. My wife and I had commented earlier in the movie how much McRae, our 3-year-old, looks like Drew Barrymore's character, and I guess with that and the scare we had back in January with Roxie in the back of my head, I just started bawling. I don't mean some wet-eyed, sniffing cry ... it was an all out meltdown. I completely lost control. Just when I'd think I could stop, something else would occur in the movie that really hit home. I was immediately and fully invested in the movie, but on some parallel, personal level.

I wasn't just seeing the parallels between the movie and our life ... in my mind, the scenes I was watching were happening to our family: Gertie was McRae and Roxie was E.T. To me, Gertie watching E.T. being worked on by the doctors was Roxie lying on the floor of our foyer being tended to by paramedics that morning. The doctors surrounding E.T. were the same as the doctors surrounding Roxie in the E.R. trying to stop her seizures and then again in the Pediatric ICU trying to get her to breathe on her own while Kate and I stood by helplessly. E.T. is an alien, misunderstood, and cannot communicate in the typical way humans do. Roxie is a very different child and has alternative communication techniques. And on and on. The similarities were so exact and so many of them were happening at once ... so I lost it.

I think a lot of parents of medically-fragile, special needs kids would have the same reaction. We fret over whether we are doing everything we can to help them live and thrive. We dwell on whether we are helping their siblings understand and cope and be strong. We worry about the unknown futures for our families. And we grieve, whether we realize it or not.

And sometimes it comes out in the middle of a movie when we least expect it.

Mysterious Wakeful Nights

Roxie has been waking up at night and sometimes staying awake for 4 to 6 hours in the early morning. We aren't sure what could be causing this behavior, but have wondered if the CoQ10 or Carnitor supplements she takes could be to blame. Her dad mentioned that CoQ10 lists sleeplessness as a side effect. The odd thing is that when she wakes up, usually around 1 or 2 am, she acts like it is time to get up. She is full of energy and sometimes we think she will bounce off of her bed. She claps her hands, makes all kinds of sounds, and occasionally makes so much noise she wakes up her little sister in the adjoining bedroom. Some nights we'll leave her awake in her bed since we now have a video monitor system. It allows us to see Roxie when she's in her bed at night and gives us some peace of mind that she's OK. Since our bedroom is downstairs we felt nervous about being so far away from her should she need help. This way I don't feel the need to run up to check on her all night long since I can just glance at the monitor to see how she's doing. Last night Roxie was particularly wakeful and her Dad got in bed with her and reported that she never fell back asleep the rest of the night after waking up at 1:45am. And because she displayed similar behavior the morning that she had seizures and fell ill in January we get a little paranoid that something could be brewing when she wakes up this way. But this time in the morning she was just fine and had a great time at OT and then a great day at school. I don't get it, but lack of sleep doesn't seem to phase her much. I'll mention this to her pediatrician next visit, but I imagine that he won't have much to say about it. Let's hope for more sleep tonight!

Back From Vacation

We are back from a week at Kiawah Island with our extended family (Sprinkle grandparents, cousins, aunt and uncles --12 of us in one house). As usual preparing to take Roxie on vacation is time consuming and stressful (double and triple checked for her meds). But since we drove we were able to take LOTS of her stuff to make sure she'd be happy and comfortable (including her jogging stroller, wheel chair, adarondak chair, high chair, foam flooring, sound machine, and blow-up mattress). And guess what...Roxie had a great time. She enjoyed gourmet food, had fun on a family bike ride, strolled on the beach, and floated around a pool.

To enjoy Kiawah's magnificent tree lined bike trails, we rented bikes and a trailer to pull Roxie around the island so she could join in on the family bike rides. She can't ride in a bike seat because she can't wear a helmet as a result of her intense sensory problems with anything that touches her head (she cries uncontrollably). In a trailer she is safe without a helmet because it has a non-roll feature and side crash bars. Her first try was a disaster and she had one of her fits (throwing her head around, crying and was out of sorts for about an hour even after her dad took her out of the trailer). But that was her only major issue the whole trip! And by the end of the week we decided to try the bike trailer again and this time had McRae, Roxie's little sister, ride along inside. And sure enough with little sis by her side Roxie loved it, laughing and smiling the whole time. By the end of our ride both girls were lounging, looking up at the sky, and totally relaxed. We were thrilled and have just adopted a bike trailer from the Thomas family so hopefully we can take more family bike rides. It is nice to have a new option for something to do out of the house that can include Roxie and still be fun for everyone in the family.

We also bravely attempted a night out at the lovely Jasmine Porch restaurant with all 5 kids--gulp. Surprising us again, Roxie had a blast! She enjoyed she-crab bisque, pumpkin muffins, sweet potato ravioli, and lots more gourmet treats on a special night out. Roxie loved every bite and ate more than all the other kids. The rest of the week was nice and included a few strolls on the breezy beach, a couple of dips in the pool (which was heated thankfully) and Aunt Ellen's brilliant effort to get our wimpy kite to fly.

Unfortunately my nephews were sick much of the vacation with a virus that caused fevers, a bad cough, and fatigue for them. McRae and my niece had come down with the virus by the end of the week as well. We were terrified that Roxie could catch the virus, get a fever, and then have seizures and/or respiratory issues. And now with knowledge of her Mitochondrial Disease we understand that a seemingly small illness can cause Roxie to become critically ill (as evidenced in January of this year). So we were prepared for the worst with her Diastat pen on hand (in case of a seizure), a protocol letter for ER docs about treating Mito patients (believe it or not many doctors don't know much about this disease), and directions to the nearest hospital. But Roxie did not catch the virus and thus far has remained healthy! What a relief!

All in all we had a great time even with both girls sleeping in our room for a week. Cozy!

Diagnosis: Mitochondrial Disease

In late November 2007, we received a report from Dr. John Shoffner in Atlanta. We took Roxie to meet with Dr. Shoffner in August of the same year, and he used tissue from a muscle biopsy, spinal fluid, and blood samples for the workup which would determine if Roxie had a Mitochondrial Disease. The report read like Greek to us, and we didn't realize (since we aren't neurologists or biology experts) what it meant for Roxie until recently. While Roxie was in the Pediatric ICU in January of this year -- to treat RSV and pneumonia that triggered breakthrough seizures -- a doctor there (the fabulous Dr. Johnson) read the report and explained to us that Roxie apparently does have Mitochondrial Disease (Complex I and III) and consequently we learned a little about what that means. We have not had a follow-up appointment with a specialist, so thus far all of our information has come from Dr. Johnson, from Roxie's neurologist Dr. Nelson, from researching online, and from parents of children with Mitochondrial Disease ... so I will do my best to explain what we know. While we are on a waiting list to find out when we can meet with Dr. Shoffner again (the best they can tell us is "by this summer" ... and yes, this is extremely frustrating), we hope to take Roxie to meet with another mitochondrial specialist, Dr. Bruce Cohen, at the Cleveland Clinic in April who can help us further understand Roxie's diagnosis and how the disease may affect her in the future.

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The following explanation was copied from the United Mitochondrial Disease Foundation's website.

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

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That is a basic explanation of general Mitohondrial Disease. However, there are currently 50 known types of Mitochondrial Disease and each case is different. We know that Roxie has defects in Complex I and Complex III within her mitochondria. I have learned that there are five complexes that take place within the mitochondria and each one takes part in the production of ATP which is what the body uses for energy. We now believe the disease has caused Roxie's low muscle tone, epilepsy, developmental delays, and sensory integration disorder and has left her body in a fragile medical state. We hope to learn more about her specific case when we meet with Dr. Cohen at the Cleveland Clinic in April. I mailed Dr. Cohen information about Roxie's medical history as well as the results from Dr. Shoffner's office.

Currently there is no cure for Mitochondrial Disease. There are a few treatments which have shown the potential to slow the progression of the disease in some patients. Roxie is now taking CoQ10 and Carnitor supplements to try to treat her disease and the hope is to prolong the life of her cells. There is a lot of research going on right now that could potentially help Roxie in the future. So we have hope and we are so blessed each day that we have Roxie with us and in good health.

Back to normal

[February 4, 2008, email to family and friends]

Hi all -

Thought you’d appreciate a brief final update on Roxie. She’s been home for just over two weeks now, and in that time, she has really gotten her full spirit back. She was weaned off all her medications last week, and today we were allowed to stop the supplementary nutrition she was getting nightly through the TPN line. Roxie is happy, strong, and both virus-free and seizure-free ... we love it, and we feel very lucky.

Thanks so much to you all for your constant support.

Love,
Phelps, Kate, Roxie & McRae

Journal entry

It’s hard to believe how bad things seemed a month ago. Waking up to your daughter shaking uncontrollably, eyelids blinking repeatedly, eyes staring right through you. Spending all day and night at her side, her in a medically-induced coma, day after day expecting things to get better and when they do, they turn south again the next day. Having to see your daughter “bagged” and given manual breaths while they figured out how to get her breathing on her own again. It changed me. (How could it NOT change a parent?) I’ve never been as focused on something in my entire life. It FORCED me to focus. Gave me clarity.

Slow down brother. Slow down.

Home sweet home

[January 23, 2008, email to friends and family]

Dear Friends -

Presbyterian released Roxie on Saturday and within a couple hours of being home, Roxie ate her first meal in nearly three weeks. Needless to say, we were ecstatic. She continues to improve and even was moving around like her old self on the floor this afternoon.

We’re weaning Roxie off some of the sedatives she was on for so long in the hospital, and, with the help of a home health agency that’s on call, she’s getting the necessary calories and nutrition through a TPN line (an IV-type line that stays in her arm). Much progress is being made, and we expect to be off all sedatives by Tuesday, and for her to start eating much more regularly at that point (she’s only eating 20-25% of her typical intake right now).

Most importantly, she’s just happier to be home. That goes for all of us, including McRae who has been a great help and loving presence for Roxie despite the frustration of having her family gone for so long and not really understanding it all.

Thanks to all of you for your constant support. We couldn’t have made it through this difficult time without you.

With much love,

Phelps, Kate, Roxie, & McRae

Light spirits on the Peds floor

[January 18, 2008, email to friends and family]

Hi all -

I wanted to let you know that we received some great news from the doctor yesterday. After 17 days at Presbyterian Hospital, it sounds like today or tomorrow should be our last. Needless to say, the mood in Roxie’s room late yesterday afternoon was light-hearted!

Roxie is doing really well, with nice-sounding lungs and seizure control. That said, it has been one week now since she has been off the ventilator, and she still hasn’t taken food or drink orally. Our best guess is simply because she’s stubborn just like any Sprinkle, but we’ve also been told by the doctors and nurses that this isn’t too unusual.

Typically the hospital likes patients to eat/drink on their own before releasing them, but given Roxie’s heightened sensory issues, they agreed that she may be more likely to eat/drink at home in her comfort zone. So ... yesterday they put a central line into her that allows her to get nutrients/fluids through it until she eats/drinks. Along with a nurse who will stop by the house periodically, we will administer all Roxie’s medicines orally and all her nutrition through this central line, that is, until she begins to regularly eat/drink on her own. We were pretty amazed that this was even an option, and we are confident this will get Roxie where she needs to be faster.

From our entire extended family, thank you for your persistent thoughts and prayers, food and cards. This has been, and continues to be, a spiritual and humbling journey, and we will never forget your support.

Love,
Phelps, Kate, Roxie, & McRae

Food from friends is glorious

[January 16, 2008, email from my sister Ellen to me re: dinners]

Looking forward to seeing y'all in a little while.

Wednesday Night (Jan. 17th): Spears
Thursday Night (Jan. 18th): Debbie Rubenstein
Friday Night (Jan. 19th): Ann McCain
Saturday Night (Jan. 20th): Anthony & Samara Foxx
Sunday Night (Jan. 21st): Amedios
Monday Night (Jan. 22nd): Jennifer Hawthorne
Tuesday Night (Jan. 23rd): Cate Martin

Stage two: uncertainties abound

[January 13, 2008, email from Ellen to friends and family]

Hi all,

Roxie is continuing to improve and is resting on the main pediatric floor at Presbyterian. Even though she is getting better, she is feeling miserable and is going through Detox, which is very hard on her and Phelps & Kate of course. They expect that will continue to get easier on her in the next couple of days. They had a scare today when they thought Roxie may be having seizures, but a recent EEG looked good. They are going to do a repeat EEG tomorrow morning to make sure she isn’t have seizures. Assuming this EEG is good, she should be on her way to going home. Please continue to keep them all in your thoughts and prayers. The reality of a child that has been under heavy sedation, pain medicine and with breathing tubes for 8 days, is difficult, since the recovery from so much trauma is hard on anyone, especially Roxie, who has such sensory issues and low muscle tone. But, as we have all seen, Roxie is tough and a fighter, and will hopefully be home soon. Thanks again (I know I have said this so much) to everyone. Please keep the support coming, you are so much of what makes it possible for Phelps and Kate to get through this.

Ellen

Dinner train ... unbelievable

[January 12, 2008, email from my sister Ellen to me re: dinners]

Hey Phelps,

So sorry that Roxie feels so bad. I know it must be so hard to watch her feeling so miserable and not be able to do anything about it. Hang in there, you and Kate are unbelievable parents! Below are the people bringing meals for this week. Four more people have asked to do a meal but I am waiting for confirmation back on the dates following these...I will let you know.

Love you,
Ellen

Saturday Night (Jan. 13th): Joan Rizzo
Sunday Night (Jan. 14th): Allison Hertzler
Monday Night (Jan. 15th): Amedios
Tuesday Night (Jan. 16th): Lance Kinerk
Wednesday Night (Jan. 17th): Spears
Thursday Night (Jan. 18th): Debbie Rubestein

Almir & Amra bringing something Saturday for snacks.
Jonathan tried to bring dinner, told him no.
Chris & Denise Pineno tried to bring dinner, told them no.

Thinking we're out the door!

[January 11, 2008, email to family and friends]

Dearest Friends,

Roxie had her breathing tube (and two other tubes) pulled out this morning and is doing great! She’s breathing well on her own and is relaxing as she comes off all the sedatives. This was a huge step toward being well enough to go home, and we are so relieved. I truly cannot thank you all enough for your thoughts and prayers and gifts and food and everything else. It has been amazing and humbling to experience, and we love you all.

We’ll keep you updated once we know more, but we expect to be in the ICU for another couple days and then probably a day on the main floor before heading home.

Thank you.

Phelps, Kate, Roxie, & McRae

The day I got religion

[January 8, 2008, email from my sister Ellen to friends and family]

Hi all,

I just wanted to get another update out to all of you. Roxie had a tough morning today. They had a really hard time getting her oxygen levels where they needed to be and had to manually give her breaths for about 1 1/2 hours. Her heart rate and other vitals went bad during this time and it was a very scary 1 1/2 hours for Phelps & Kate. Roxie is now stable and has been since the incident was over. The doctors made the decision to switch her breathing tubes to infant tubes (so they are smaller) and these seem to be working. I don’t understand the specifics but they increased the pressure in the tubes but decreased the volume. Because of all the stress to her body this morning, they have spent the afternoon trying to allow her to rest. Therefore, along with the sedatives and pain medicine, she is also on a paralytic drip. They also added a direct line into her arteries to take a constant blood pressure reading so they can keep a better eye on everything. Roxie’s blood readings (alkaline vs. acid levels) are improving and the CO2 levels are also improving. As you can imagine, this was a very frustrating setback, but the doctors and nurses do believe she has turned a corner and is getting better. Her Chest Xrays continue to improve and she has much less secretions coming out of her lungs (they said today that the fluids coming out is now clear, not yellow anymore), so her body is doing a great job of fighting off the RSV and pneumonia. The hard part is figuring out how best to get her breathing on her own. As you all know, Roxie is a special patient because the combination of her low muscle tone and high sensory issues. When they decrease sedation, she is just so sensitive to everything that she gets agitated...so they are moving slowly on this.

They do not know the cause of the crash Roxie experienced today, but one of the nurses believes the most likely cause was a mucus plug in her breathing tube. We don’t know for sure and just pray that it doesn’t happen again. The goals over the next few days are to get Roxie off the breathing tube, maintain seizure control and decrease sedation. All of this will have to occur before they can leave the hospital.

It looks like they will likely be in the hospital for a while longer. If any of you want to do a meal for them and haven’t had a chance yet, please respond to this email. No pressure, just know this email list has grown and wanted to let everyone have an opportunity. We have dinners covered through Sunday (other than Saturday night).

Again, thank you to all of you for your thoughts, prayers, food, visits, emails and phone calls. Your friendship and support of the entire family is more helpful than you can know.

Ellen

A much-needed good day

[January 7, 2008, email to family and friends]

What a difference a day makes.

After a tough Saturday, on Sunday morning Roxie rallied big time. For the past 24+ hours, she’s been steadily improving and her lungs and levels are looking good. I want to thank you all for your thoughts, prayers, and well-wishes. It has made a huge difference to our entire family.

The latest expectation is that we can get Roxie out of the ICU in 2-3 days and then out onto the pediatric floor for a couple days after that. We hope to have her back home by the weekend. The stay is longer than a typical child would experience mainly due to her low muscle tone and sensory issues; everything just takes a little bit longer. Roxie has handled everything like a champ, and so has her sister, who sends messages (and various items!) to Roxie every day wishing her well.

Thanks all. We are a lucky bunch.

Phelps, Kate, Roxie, & McRae

Life in the PICU

[January 4, 2008, email to family and friends]

Our Dear Friends,

First of all, thank you all so much for your prayers and well-wishes. I can’t tell you how much it has meant to Kate and me.

Ellen related to many of you the really great news we got yesterday from the neurologist ... the types of seizures Roxie most likely had on Wednesday were not the kind that would affect her brain development. That was a huge relief.

Roxie’s condition remains stable and she’s still heavily sedated and on a couple of anti-epileptic drugs while her body fights off the RSV and pneumonia. Our goal is to get her to the point where she can breathe and cough up stuff on her own and have her sedation lowered. (They’ve had her on the breathing tube to help her lungs rest while she’s fighting off the crud and so that they can suction out the secretions that build up in there.) We tried to remove the tube today, but she wasn’t quite ready, and we’re going to try again tomorrow. Right now, she’s resting really well.

Once she’s completely kicked this thing’s butt, we will be able to head home ... they are telling us it’ll likely be mid-week. Thanks again to all of you. We are extremely lucky to have such family and friends.

Warmly,

Phelps & Kate

Caring friends

[January 4, 2008 email from my sister Ellen to me re: dinners]

Phelps,

Here is the current meal schedule. Everyone knows that y'all would prefer no company during the hours of 6:30 to 8 PM while you are home with McRae, so they will all plan on dropping off either before then or dropping and running. Jenny Beacham is bringing over some snacks sometime this weekend, I told her I thought some one would be there most of the time so to take stuff by the house whenever.

Tonight (Friday): Robb and Tammie Beatty
Saturday Night: Worrells
Sunday Night: Saldarinis
Monday Night: Nofsingers
Tuesday Night: Prices
Wednesday Night: Maddreys

I will let you know as more people call and email me back. You have amazing friends! They are all so giving and care so much about y'all...cool!

Love you!
Ellen

Follow-up email …

Additions to that:
Thursday: Clifton and Michelle
Following Sunday: Olins

Hope you are doing okay. I love you.

No long-term effects from seizures

[January 4, 2008, email from my sister Ellen to friends and family]

Hi all,

Not much to update since Phelps' last email except to say that the neurologist did confirm the type of seizures Roxie was having were "partial seizures". I don't know much about what that means other than they are harder to get stopped than general seizures but that they almost never cause lasting effects to the brain once they are stopped. Therefore, no one expects that once we get Roxie well from the RSV there will be any long term regression or delays from the seizures. So, that is great news. Roxie has been stable since Wednesday afternoon and is continuing to strengthen. The nurses and doctors have been fantastic, Phelps & Kate are very happy with
her care.

All that being said, Roxie is still expected to remain in the ICU for another couple of days and likely in the hospital for awhile after that. They are basically kicked out of the ICU from 6:45 to 8 PM in the evenings, so they are coming home to spend some time with McRae before she goes to bed and get a chance to have dinner. So, I know a lot of you have asked about meals and if you would like, I know those would be much appreciated. Starting tonight, through the next 7 days would be great for dinners. Please let me know if there is a night you would like to do. It would be great if you could have the meals to their home by 6:15 that evening, since they really would prefer to have down time with McRae once they are home, since they are seeing her so infrequently right now.

Thanks to all of you, if you would prefer to support them through thoughts, prayers, bringing snack foods (fruit, muffins, etc) or in any other way, that would be wonderful too. Please don't feel any pressure to bring a meal if that doesn't work for your family.

Phelps & Kate are so lucky to have friends like all of you and all of your support has meant more to them than you can know!

Ellen

RSV triggers breakthrough seizures in Roxie

[January 2, 2008, email to friends and family]

Hey all –

Some of you know about Roxie’s seizure episodes this morning, but others don’t. I thought you’d all want to know the situation and/or appreciate an update.

Roxie is currently stable and sleeping soundly beside me in Presbyterian’s Pediatric ICU. She experienced a couple of 20-30 minute prolonged convulsive seizures this morning, one at home that triggered a 911 call and the other in the ER a couple hours later. We have had her seizures under control most of today and she is heavily sedated to let her rest.

We found out that she has RSV (Respiratory Syncytial Virus) and her body’s response to fighting it likely triggered the seizures. For some reason, Roxie was showing no signs of RSV (coughing, sneezing, runny nose, much like a cold), but she may have just started down that path last night which, again, may have led to the seizure activity.

As you know, Roxie has not had a clinical (visible) seizure in about 2 1/2 years. The type of seizures Roxie had this morning were different from any others she’s experienced and their prolonged duration are classified as “status epilepticus.” This can be extremely dangerous if not treated but we think in Roxie’s case that we got them under control quickly enough that there will be no long term effects.

Right now, our goal is to get the RSV (and resulting pneumonia) gone, and a that point we will be better able to tell what kind of seizure control she has. Until then, we are keeping her heavily sedated, with a breathing tube, and seizure-control drugs being given intravenously. We expect to be here at least three more days; she is safe and in very good hands.

Please know that we have lots of family support. I’ll either send an update myself or ask my sister to in the next couple of days. Roxie’s a tough nut, and I feel certain that she’s going to be just fine. Thanks to all of you for your thoughts and prayers.

Warmly,
Phelps