Quick Update

It's Hailey Mama here and I want to wish all of you a wonderful holiday weekend. There is much for which we are grateful and thankful.

Sulwen and her parents are at home and doing well. Since the Franke Grandparents' departure on Tuesday, Sulwen and her parents have been busy. Stephen has been working, Tanna has been catching up on being at home and everyone continues to be focused on Sulwen and her care.

Sulwen is tolerating the steroids, anti-inflammatories and blood pressure medication - and the meds seem to be doing their job. The greatest daily challenge is that she and Tanna have restless nights, but the hope is that normal sleep will return after Sulwen finishes her month-long course of steroids. She is eating well again (especially now that she has been introduced to cookies by me) and is crawling again in a limited way. She is reorienting herself to favorite toys, like the "slide to nowhere" and figuring out how to approach them since her loss of strength won't allow her to engage as she did a few months ago.

On Thanksgiving Day, Sulwen had a busy social schedule full of play and interactions with her Boulder Drapkin cousins, Aunt Diane and Uncle Michael. Her world slowly is moving back to a more normal stance.

On Monday, Sulwen will have labs/blood work done to make sure her body is fighting the right fight still and she is slated to start physical therapy soon, too. Tanna may post some images from the holiday weekend but more news will come next week.

Best wishes to all and thank you for checking in with us!

Medical Play

In an ongoing attempt to help Sulwen process her experiences over the past six weeks Grammy, Grandad, Stephen, and I sat down in the living room today and played with some of the items in her medical kit from the Child Life specialists.

At each hospital Child Life was a fantastic resource for Sulwen and us. After her eight days at LPCH she came home with a cloth bag full of "familiar" medical items and cloth dollies with which she could play, get used to, and work through some of what she had experienced.

After we played a little and Sulwen beamed a few smiles at everyone, Grammy and Grandad headed back to Talent, OR. We are so thankful they made the long trip to Timber Cove to help out for just a couple of short days. Thanks Mom and Dad!

Dad puts the glove on his head and tries not to pass out

not to be outdone, Grandad blows up a glove to be B-I-G and fun
(and I think he's even milking it like a cow!)

Sulwen bandages up Grammy's foot with her stretchy, pink tape

Sulwen has her very own stethoscope

Clinic Day - Cousin Day

Today Sulwen and her parents had an appointment in the ambulatory (outpatient) clinic for Juvenile Rheumatology at LPCH. They reunited with five specialists who have been a part of Sulwen's care there. Although her appointment was with two of the physicians, three others dropped in on Sulwen to see her and say hello. Honestly, Sulwen has that kind of social magnetism that draws people to her!

The feedback from the physicians was that she is doing well. She has gained back 1.5 pounds and the steroid treatment seems to be working at keeping her symptoms at bay and moving most of her blood counts in the right direction. Sulwen's blood pressure remains above normal, so they will try a higher dose of the transdermal clonidine with her. In addition, they also prescribed physical therapy for a few weeks to help her regain muscle strength in her arms and legs. Overall, the specialists reiterated that there is no way to know what her prognosis is based on where she is at today and on how she is responding to steroid treatment. They are quick to state how much better she looks and that they are encouraged that she is responding to the steroids.

After her appointment, Sulwen reunited with the "Boulder Drapkins" - Michael, Diane and their four children (all pictured here minus Diane). They are in the Bay Area for Thanksgiving week and it was a very happy reunion. Sulwen was delighted to see her cousins briefly and Tanna reported that all the kids have grown up since she last saw them in August!

Sulwen will continue her steroid treatment at home and begin physical therapy soon. She will have lab work done next week locally in Santa Rosa and then go back to the ambulatory clinic at LPCH the week after next.

I know this is a tentative time for Sulwen and her parents - every day brings the joys of re-entering their "old life" as well as the challenges of transitioning to an indescribably altered "new life." Tanna and Stephen have shown an inner strength and resolve to take each step with conviction and to gracefully bend with the twists and turns of the unknown.

Home Sweet Home - Take 2!

We were glad to be home again this weekend after what seemed like a very long week in the hospital. I think Stephen and I have finally come to accept that we may end up in the hospital again at any time (although hopefully not) and that it may be for any length of time (hopefully short).

Hailey Mama followed us back up to Timber Cove on Friday and Grammy and Grandad came down from Oregon on Saturday to be with us for a few days. Sulwen is definitely apprehensive these days and has a hard time with anyone being in her space except for Mom and Dad. After having weeks of people walking through doors and focusing their attention, hands, wires, stethoscopes, and needles on you, we figure it's going to take some time to get readjusted. She's been through some pretty scary and painful things and it's not picnics and daisies yet.

Still, Sulwen rallied to play with Grammy some and managed a few smiles in Grandad's direction. We've been grateful to have them here.

Since we got home her appetite has increased the way we expected it to once on steroids. She has reinstated her version of the Michael Phelps diet. Good thing, since she even tried to take a few steps on her own this evening! Stephen and I have also been heartened that Sulwen is taking her medications like a champ. She is on 6 (yes, count 'em, 6) prescription medications. Fortunately, she just has to take 4 of them twice a day. She opens her mouth for them and rarely even fusses now. At the hospital it was a different story.

We're heading down to Palo Alto to see the Rheumatologists tomorrow at an outpatient clinic. We will likely have more news to share after that.

Until then, a few pictures from the weekend.

playing "open, close, and give me a clap!" with Grammy

share the love and the noodles, especially with the camera man

ready for a walk (and nap) in the park with the pogs

the happy medicine taker - yay!

Thank Goodness, it's Friday

Just a quick posting to let you all know that Sulwen and her parents left the hospital late this afternoon to make their way home to Timber Cove. Sulwen transitioned to the oral steroid without too much difficulty. She has several oral medications she will take at home and her parents will be taking her blood pressure twice a day to make sure it stays within a normal range. The family will be back at Stanford on Monday for a check-up with the Rheumatologists.

The next step for Sulwen is to continue with the steroid treatment and to get a lot of rest. Her immune system is suppressed, so our little princess will not attend very many social events for awhile. I know the family is ready for some down time at home where they can closely monitor Sulwen for improvements as she continues with her treatment.

Again, I want to thank everyone who has been so supportive - the caring and love that each of you extend is felt in the hearts of the Timber Cove Drapkins.

Sulwen in Slo-Mo

Sulwen had a super "slo-mo" (slow-motion) kind of day. She spent most of the day cat-napping and catching up on rest. The change in her demeanor is due to a new antihypertensive medication she is taking to counterbalance an increase in blood pressure caused by her steroid treatment. She is wearing a small transdermal patch on her back that remains for a week at a time. Most likely, her body will adjust to the medication in a few days and her energy should return. It also is likely that she only will need this as long as she is taking the steroids, which is slated to last approximately one month.

One of the highlights of the day was receiving the results of her ferritin levels. Ferritin is one of the inflammatory markers the Rheumatology team uses to monitor how her body is responding to the steroid treatment in fighting the arthritis. Her level has dropped significantly which is a positive sign. If you're curious about autoimmune vs. autoinflammatory or JIA in general, peruse the NIH Q&A web page about Juvenile Arthritis.

The day had all the regular events plus some preliminary planning for tomorrow. Tomorrow, Sulwen will transition off the IV steroids and onto an oral form. She also will have new lab work done that will be helpful in assessing how her body is responding to the treatment. Lastly, there is a chance that she will be discharged tomorrow and be able to go home. This is the best news, but we're not getting overly excited since we know that this road has unexpected twists and turns.

Tune in tomorrow for more updates!

Settling in - hopefully not for too long

I'm sitting on the hospital bed with Tanna and Sulwen as we wind down for the day (hopefully). I started my day off by visiting Peet's Coffee so I could enter the hospital room double-fisted with lattes first thing in the morning. Nancy is the lead latte lady lately, but I am trying to augment her visits by an early morning run.

Sulwen had a fitful night, but her side effects were manageable. Mom and Dad slept a bit too. She was ready to go this morning and was already playing with her Mom when I arrived. I brought a few fun socks for her - all mismatch socks and she liked checking them out.

Her Dad got to work. It is quite amazing that he can sit (and sleep!) in that narrow chair for 8 hours and work on the Internet. Although he is giving me the thumbs up in this picture, I know it can be wearisome and challenging to sit all day in the hospital room while Sulwen goes through exams and daily encounters with all kinds of medical personnel.

I also had lunch duty today - the menu was quinoa, lentils, broccoli, cauliflower, kale, chard and sweet potatoes. Sulwen, Tanna and I had a picnic on the floor with Mozart playing in the background. It was great to see Sulwen bounce and sway with the music between grabbing with great gusto a bit of everything on her plate.
Later in the day, she had a bath, a nap and then a visit from Nanny who played with her "unplugged." They were able to unplug her IV for a short time so she could move uninhibited. And move she did! She crawled around and even tried to stand on her own.

The day signified settling in to what could be called a routine day. Her specialists make rounds, spend a short time with her and her parents to review status and plot next steps. Sulwen's fever and rash have been kept at bay. She has some side effects from the steroids but they are manageable. The next benchmark will be on Friday after she finishes this round of IV steroids and transitions to oral medication.

A typical day here isn't as bad as it could be...the hospital room smells like chai and lavendar (a real Drapkin touch) and we can listen to Mozart and have picnics. But it wears on everyone to be surrounded by such illness and sadness, to be confined to a room indoors. The family is hoping with all their hearts that they can go home soon. But the last six weeks have taught them that every plan can change, hopes can be dashed and the road to recovery is not straight and narrow. Their faith and inner strength carry them and it has an even greater presence in this room than the chai and lavendar.

Sulwen on 'Roids

Hang Ten!

Welcome to Tuesday, a new day, a new beginning to steroid treatment and a breath of fresh air (if we're given enough of a break from playing with Sulwen). Sulwen started her steroids last night and the family actually rested and slept. It was a very different scene I walked in on this morning. Everyone looked somewhat refreshed and Tanna reported not even waking up when the nurse came in to do vitals at 4 AM!

Whether Sulwen was feeling the steroids or just feeling better, who cares! Today was about playing and smiling and laughing and flirting and being the best little girl in the universe.

Although the reduced dose of steroids means she may be in the hospital longer, it certainly means a happier little girl for now. Enjoy the pictures from today (oh - there are some for yesterday too - I updated the posting below). We had a lot of fun!

Monday, Monday

The Drapkins enjoyed a glorious weekend in Timber Cove even though it was shortened a bit so that Sulwen could begin her steroid treatment. Sulwen was admitted to El Camino Hospital yesterday and Tanna, Stephen and Sulwen settled into their private room and were welcomed by a friendly staff.

The initial treatment has dashed Sulwen's hopes of passing all drug tests for the 2010 Winter Olympics - OK so she'll only be three and won't meet the age requirement anyway...It also dashed the family's hopes of an effortless and easy transition to this treatment. Sulwen appeared to be very sensitive to the small amount of steroid she received. The doctors conferred with Tanna and Stephen about treatment moving forward and they have decided to try a reduced dosage more frequently to see if Sulwen responds with less discomfort.

I arrived this afternoon to check in on the scene. I brought steamed rice and veggies for the family that Nanny loving prepared. Sulwen was very interested in her Mom's plate and trying everything on it.

It also was great fun to see how much Sulwen enjoyed Nanny's visit. Nanny brought an adorable hypo-allergenic stuffed elephant as well as soy lattes for all. Sulwen was feeling good and everyone got into the play mode. Stephen stole the rolling stool from me long enough to give her a ride.

For as much as it looks like we're having fun, it is a hospital and Sulwen has experienced some of the nastier side effects of steroids. The last 24 hours has been a challenge and for all the discomfort our little sunshine has had, I know you join me in my hope and prayer that the drugs are doing the work internally to get Sulwen on the mend and back at home soon.

As I prepare to leave the hospital, I am heartened by several things: steroid treatment will be suspended for tonight so that the family can rest; the doctor on call, Dr. Mosely, spoke directly and attentively to Tanna and Stephen and ensured that he would do what he could to make Sulwen comfortable; and Sulwen seems to have worked through the worst of her side effects.

Home Sweet Home

We arrived home last night to the happy thumping of tails against the car, a glorious moon over the pines, the thundering of waves crashing, and Hailey Mama hugs welcoming us back to a cheery, bright, clean home. Home sweet home!

We are only home for the weekend. Sulwen will start steroids on Monday or Tuesday at LPCH's satellite space at El Camino Hospital in Mountain View. Still, it has already been worth the long drive home. Friends and neighbors who saw us out for a walk today all stopped to see how Sulwen and Stephen and I are faring and to offer any support they could. We've been brought meals and well wishes. We appreciate more each day the wonderful community in which we live.

Sulwen did great all day and was happy to play with toys she hadn't enjoyed for awhile and play peek-a-boo with her sun balloon that Hailey Mama gave her when she came back two weeks ago (see photos). She even wanted to use her walking toy and could with some support. She also tried a little crawling but it became clear that this really bothered her wrists.

It has been heavenly to be home and to see Hailey, Bill, and the dogs. Thanks for helping to make it so perfect Hailey!

Sulwen Sunshine and Pretty in Pink (updated post)

This is an updated post for today. Note the lovely ladies in pink - Nanny and Sulwen in Nanny's garden this morning.

Sulwen and her parents had a restful night. They are spending most of the day in Palo Alto while Stephen works and Tanna organizes and rests with Sulwen. They are headed back to Timber Cove as I type at 6:10 PM.

Sulwen is feeling better - she even crawled for the first time in five weeks! Her Mom coaxed her a bit, but she did it!

The Drapkins did some shopping (surprise!) before they left the Bay Area, scoring a new futon, ensuring that the family will sleep much more comfortably than before.

I'm making pumpkin cookies again and waiting for their arrival.

Going Home At Last!

It is Thursday evening and Sulwen is being discharged from LPCH! Although Infectious Disease still is waiting for a few test results, Rheumatology has given her a diagnosis of Systemic Junior Idiopathic Arthritis. Evidently, the team at Stanford says that Still's Disease is a term only used for the adult-onset version of this disease. So, Sulwen has fondly been called "a systemic" by the team at LPCH.

She will rest at Nanny's tonight in Palo Alto and then journey home to Timber Cove for a glorious weekend - it's supposed to be 80 degrees here! Monday, the family will head back to the Bay Area for the initial 3-day treatment of the steroid, prednisone. Sulwen will be in-patient at El Camino Hospital in Mountain View Monday through Wednesday. LPCH has a floor at this hospital and the Rheumatology team makes rounds. Tanna and Stephen have been told that it should be quieter for them there.

The LPCH Rheumatology team has taken Sulwen as their "charge" and Tanna and Stephen feel confident that she will receive the best care from this group as they have proven their ability to work with Sulwen, communicate with Tanna and Stephen and utilize their knowledge, intelligence and talent in their care for her.

The physicians recommended reviewing the Arthritis Foundation website for more information, and in particular the page on JRA. I found it helpful in providing information on the disease, its treatment options as well as addressing the emotional side of the disease. They also recommended the NIH site - this link will take you to the Health Information page about Juvenile Arthritis, which I thought was good, too.

I look forward to sharing with you more information, more updates as well as ways in which we can help as the Timber Cove Drapkins start this new chapter.

And we love the comments, so please know that we read and enjoy them. Thank you.

Getting Closer

It's a gorgeous day here on the coast (above view from Chez Drapkin today) and I am feeling uplifted and inspired by the fact that Sulwen may be released from the hospital today. We all still take this moment to moment. But for me, at this moment, I am feeling that fresh ocean breeze calm my soul because I think we are very, very close to a diagnosis.
Sulwen is doing well this morning (just a bit tangled in her cords) after a 90 minute MRI last night and starting a new prescription of two anti-inflammatory drugs. Tanna said that she is tired and had a fitful night, but that was expected because of anesthesia and the new medication. They performed blood work this morning to see what her numbers revealed after starting this new prescription. Those results will be back later.

The MRI results came back showing no signs of abnormalities, especially in regard to inflammation in her body. This means that Infectious Disease is that much closer to finalizing their work on her case. There remain a couple more lab results for Infectious Disease to review. At that point, they are fairly certain that Rheumatology can declare a diagnosis of Still's Disease.

If Sulwen is diagnosed with Still's Disease, she most likely will start steroid treatment soon. This is a three-day outpatient treatment where she intravenously will receive steroids followed by oral medication at home. She can be treated at LPCH as an outpatient and I remind all gentle readers that this hospital is one of the best in leading research and treatment of Still's Disease at infant onset.

I anxiously await more news of her impending diagnosis and discharge from the hospital. I know you all share with me the excitement of closing this chapter and as well as the apprehension of what the next might bring.

We thank each one of you for your concern, wishes and prayers. They are felt every single day and make a world of difference.

Hailey

Nanny Food and Balloon

Good Morning.

I haven't heard from Tanna or Stephen this morning, but I did get these adorable pictures via mobile phone. The quality isn't great, but it is great to see our little ray of sunshine smiling and having some fun.

Sulwen is scheduled for an MRI late in the day to help rule out an infectious disease. As soon as I have more updates, I will post them.

Tuesday Update

Sulwen remains at LPCH today and is doing better, though she isn't quite as perky today as she was after her blood transfusion. The above picture is from Sunday when there seemed to be no stopping this little Cardinal baby!

The Rheumatology and Infectious Disease (ID) teams continue to monitor her as well as assess lab results. Tanna told me that she would be seen by ALL the ID doctors this afternoon so that they could collaboratively talk about her case and use a "group-think" process to help with the deductive diagnosing process. More lab work is scheduled for late today and there remains a possibility that they will schedule an MRI.

The family is doing as best as they can under this great strain. Despite LPCH being a first-class institution, it is not home and the family longs to be back where they feel most nurtured and supported, in Timber Cove. Nanny has been a champ, steaming vegetables and making brown rice for Tanna, Stephen and Sulwen. Stephen was able to work from his Mom's (Nanny's) home today, though I am certain it didn't feel normal. Tanna is ready for gardens, fresh air and less processed baby food, but she is philosophical in her cabin fever.

My hope and theirs is that the health care process will be extra efficient and streamlined for them in the next few days. It would be a welcome change and it might just bring them home, too.

What is Hailey Mama Doing While She Waits?

I cannot say that it is easy to wait between calls and keep myself busy. It's hard to focus and be productive. What better time is there to post yet another blog entry? This time, it is at my blog at: The Adventures of Little Comet and Tateroo.

Goodbye Oncology and Monitors!

Late yesterday, the Oncology team was released from Sulwen's case. The bone marrow tests ruled out that she has any form of cancer. Hooray! Sulwen also said "goodbye" to monitors. She slept well without any wires attached and was sporting a Cardinal onesie this morning - the first time this little fashioniesta has been able to wear a decent outfit since her arrival on Thursday. You can see her Dad holding her while she plays with new-found toys from the hospital.

Tanna reported that Sulwen was up at 3:30 AM this morning - not with a fever, not with cold sweats and chills, not with a taught tummy in pain. She was up and ready to play. She played with her Mom and the nurse who took her vitals. She has smiled nearly 50 times in the last 18 hours and her energy is returning.

Today already brought in a team of 8 doctors at once - with whom Sulwen tried to play. In addition, Sulwen will be seen by Infectious Disease and overseen by Rheumatology today. The ID team is there to continue ruling out possible viruses and illnesses. There will be more blood work, possibly an MRI and other exams to keep the process moving towards conclusion and hopefully a diagnosis.

We anticipate knowing more late today and will share it with you all as soon as we can.


For those who read errata, regarding yesterday's posting: please note that Sulwen actually watched the entire Cal/USC game with her father and not just the highlights. Her father reported that she was heard stating, "Cal sucks." Those of us close to the family know that until that point in her life, the only other word she has uttered is "dog." As Fox News says: We report. You decide.

No monitors and a little more yogurt, please!

It's Sunday and Sulwen is having a good morning so far. Yesterday afternoon, she was given a blood transfusion to oxygenate her blood and give her a boost. That along with a diuretic seem to have done the trick. The swelling in her body is reduced and she is back to some old tricks. Last night, she was thoroughly enjoying Oikos yogurt to the delight and amusement of her parents. As Tanna said, "she is really digging it." She ate rice cereal this morning and started to pull the monitors off her body. She even played with blocks and helped her father watch highlights from the Cal/USC game.

Because her blood work is looking good, they won't be taking any more draws until this evening. The family is hoping for a peaceful, restful day. Tanna said that Sulwen is really tired and I know her parents look forward to some more rest. There should be fewer interruptions today minus the normal hourly checks. The family continues to receive good care at LPCH.

Tomorrow will bring Oncology reports and perhaps some more exams/tests to help diagnose her. For today, I personally am heartened to know that she is more like her dynamic self and is digging Greek-style yogurt.

Weekend at Stanford

The weekend has arrived and Sulwen will have a chance to rest. Yesterday brought many tests and exams to monitor and continue with diagnosing her illness. It was a tough day on everyone. She slept last night and is finding comfort in the arms of her mother and continual presence of her father. The family is hoping to establish as much peace and tranquility as possible over the weekend to restore Sulwen and themselves to a calmer and more rested place.

Sulwen will be monitored closely and will have ongoing lab work done to ensure proper care. The Rheumatology team is taking the lead on Sulwen's case, to the approval and support of her parents. They feel these doctors are caring, communicative and excellent. In fact, the department is world-renowned. Although they cannot diagnose Sulwen definitively yet, Rheumatology is leading her care because her symptoms present mostly like Still's Disease, also known as Systemic Junior Idiopathic Arthritis. At this point, it is imperative that they rule out other illnesses, like cancer and infectious diseases so that she receives the proper treatment. The deductive diagnosis process is critical so that any treatment is the proper one, as treating her for the wrong illness could have negative ramifications. This means we wait, take one step and test at a time and move towards a more conclusive diagnosis.

To that end, the Oncology team will have bone marrow test results on Monday which will help rule out several forms of cancer. In addition, Infectious Disease also will monitor her blood work and lab tests. At this time, there are no other major tests scheduled. The goal now is to get as much rest as they can, monitor Sulwen closely and provide as much comfort as possible to her and her parents.

Tanna and Stephen send out their love and gratitude to all who have been in touch with them and with our families.

Lucille Packard Children's Hospital

I'm writing from Timber Cove where I await regular news about Sulwen. Last night, Tanna, Stephen and Sulwen headed to Lucille Packard Children's Hospital at Stanford. Sulwen's recent blood work showed that her white blood cell count was down below normal. She also had become feverish, was unable to keep sustenance in her and returned to a more listless state. I took the picture here right before they left.

They have been given royal treatment at LPCH (fit for a Princess!) and remain there tonight. The CEO of the hospital has checked in on them and it with deepest gratitude that I thank my former boss, Susan Packard Orr, for her role in ensuring excellent care for Sulwen. The last 24 hours has brought a deluge of tests and exams. She has been seen by teams of Pediatric Rheumatologists, Oncologists, Hematologists and Infectious Disease specialists. There is nothing conclusive yet as the deductive diagnosis continues. Oncology felt that her lab work did not present as if she had cancer. Rheumatology feels that her symptoms and lab work do present similar to Systemic JRA. Infectious Disease is waiting for some lab tests to come back so they can help the multidisciplinary team rule out certain illnesses.

This afternoon, Sulwen was put on antibiotics and had an EKG. Her ticker is fine, and it confirmed that she has a strong heart in more ways than one. She had a minor procedure to embed a picc (catheter) in her upper arm to make blood draws and medicine administration easier. She also had a bone marrow test to help eliminate cancer and other blood disorders. The entire family hopes to sleep a little more tonight.

How You Can Help
There are so many people who have offered support. Right now Tanna and Stephen are working as a tight-knit unit to be well informed and to make good decisions. This hospital trip signifies a painful transition into the potential enormity and life-long implications that surround the unknown right now.

Despite it being unknown and unnamed, Sulwen's parents are staying amazingly calm and strong. They know there will be a time when they need our support in tangible ways. For now, until there is more information, they are focused on supporting one another and ask each of us to respect their need to be quiet, reflective and internal. They need space to think and feel as Sulwen's parents and as spouses without the complexities that loved ones bring.


Very soon, there will be opportunities for each of us to help however we can.


Aunt Hailey/Hailey-Mama

The Bravest Little Girl

I'm posting an image from late September - because it is a great picture of Tanna and Sulwen at the Rogue Valley Country Club in early Autumn. This minute, I'm sitting here overlooking the ocean in Gualala where I can connect to the Internet and tell you some more about Sulwen. Yesterday was not her best day - she spiked a high fever early in the morning and really wasn't into her version of the Michael Phelps diet.

Midday, Tanna and I traveled to Santa Rosa to see a Pediatric Dermatologist and to do more lab work at Memorial Hospital. Sulwen was a champ during the ride - she barely cried and even ate some and slept. We waited for over an hour to see Dr. Sugarman, but he was attentive and gentle with Sulwen. He wanted to do some additional research and review of her charts and commented that her rash and symptoms were in line with what he had seen in the past of Junior Rheumatoid Arthiritis. He didn't think a skin biopsy was necessary at this point.

We headed to the hospital where the wait, thankfully, was brief. Tanna and I nibbled on pretzels and discovered that Sulwen likes pretzels, too. She really must be related to us. The lab work is to provide updated data to compare to her baseline from nearly a month ago. In addition, there are some new tests they included as a part of the "Deductive diagonosing" her primary care physician is doing.

Here is the best part - Sulwen did not cry, fuss or scream when she went into the lab. She sat on her Mama's lap, looking away from the technician and did not even flinch. She didn't make a sound when the needle went in, nor did she barely acknowledge that they were taking quite a bit of blood from her. The phlebotomist as amazed, as was I. She was so brave and strong. It was practically miraculous, especially given her experiences around hospitals, labs and people in scrubs.

On some level, I think the trip was encouraging for everyone. It highlighted that Sulwen is a strong little girl at her core. For her parents, it is encouraging to know that there will be new data to review. Most lab results are expected by the end of the week. For me, it did my heart good to spend time with Tanna and Sulwen and to help in some minor way as the Timber Cove Drapkins navigate through this challenge.

Tuesday, November 4th

The picture above is from last night as Sulwen played with her new toy from Grammy and Granddad, Music Mega Blocks - they make sounds of instruments, tunes and giggles when you place the blocks on top of the keyboard. We got several smiles out of Sulwen as she really liked the "giggle block."

Today was a bit different - Sulwen had intermittent rest last night and then came down with a fever this morning. By this afternoon, she was feeling better and her appetite returned. As you can see, she was a big helper, handing me my Tofurkey as we prepared lunch.

The most interesting thing for me today was seeing her frustration and anger. Tanna and I had her on the bed and Tanna got up to change Sulwen. Sulwen started to cry and scream - then she started to arch her back in a huge semi-circle. She moved all of her body and really let the frustration emanate from every part of her - including her legs! She kicked them, pushed them and then used her body to turn herself all the way over and then pushed herself to sitting. She screamed and was mad - and we allowed her to find the right expression for the frustration. She did not want Tanna to hold her or touch her. She moved her legs in ways she normally hesitates to do because of the pain. It's hard to know if the adrenaline covered up her pain or if she didn't care or if she wasn't feeling as much pain. Finally, she was willing to let Tanna hold her and soothe her. It was good to see Sulwen express herself in new ways that really involved all her body. I believe this is one of her lessons - to learn new ways to express her feelings as she copes with this illness and slowly recovers.

Tonight, the gang is at a regular doctor's appointment so we'll have some updates tomorrow.

Facing the Greatest Challenge

Life is full of challenges that come with lessons and blessings.

This is Aunt Hailey/Hailey-Mama and I arrived in a stormy Timber Cove yesterday to be here while Sulwen continues to face her greatest challenge to date. Sulwen has been quite ill with an unknown virus for just over three weeks and I am here to support her and her family while they work through the lessons and blessings of this great challenge for them all.

Sulwen has been an incredible little force as she fights this illness that has caused her so much pain and discomfort. She has made it through four different hospitals, unending lab tests, multiple pediatric specialists, health practitioners and a secondary gastrointestinal virus contracted sometime during a hospital stay. She has fought her way through high fevers, inflammatory pain that affects her major joints, nausea, chills, sleepless nights, loss of appetite and lessened interest in the world around her. Through it all, her parents have been superheroes, especially her Mom who has held her and watched over her constantly, even when she herself was hospitalized at Stanford overnight for treatment associated with the same gastrointestinal virus Sulwen had. Her Dad also has been there to support Mama and baby in so many ways, despite his too becoming ill with the gastro virus.

Nanny, Grammy, Granddad, Aunts and Uncles, cousins, family friends and neighbors all have been here to support her and her parents during this challenge. All this love and support is the blessing of her challenge and with deep gratitude, we thank you with all our hearts.

The great news is that Sulwen is turning a corner! She is engaging more with the world around her – grabbing for things and smiling at those of us trying to make her smile. Her appetite for solid food returned two days ago and ...watch out! She is eating like never before. The little 30 inch tyke is on the path to eating her own version of the “Michael Phelps” diet (rice cereal, kale, squash, beets, quinoa, yogurt, berries). We’re ecstatic that she is eating so well again. The photo witnesses a quick break while eating apple/blueberry puree last night.

Sulwen has taken on her challenge and is tackling it with the fiery passion that is so much a part of her. She has learned to cope with her pain and discomfort, to communicate with her parents about what she needs and to share her pure heart and soul despite the virus. I’ll be blogging almost daily about her challenges and highlighting her small victories. We believe that with each small victory, we are a step closer to having Sulwen recovered and well again.

Aunt Hailey/Hailey-Mama