Gratitude

I'd like to begin by thanking everyone for their generosity. My cousin Rachel came to visit us last Friday and handed us a gift that I understand was a collaborative effort on all of your parts. We are overwhelmed and humbled by the support that our community has give to us. There are no words sufficient to say thank you. An extra big hug to Rachel for orchestrating the gift, it has already brought facets of relief to our stressed out and overburdened minds and spirits. In addition to that. the gifts that arrive never fail to brighten Tessa's day. On the Roos side of the equation, my in-laws have become so important to me. Noni and Papa, your support is unflagging. Deedee, it is not only a blessed break for us when you come and read with Tessa but an absolute joy to see her smile; one could say it is "happy hour"; Mike, Dylan and Kelly we love you guys so much!.  Julie, your sweet disposition and your beautiful girls bring Tessa so much happiness; Jeff, you are my partner in being married to the Roos clan-we both know the kind of strength that requires (heeheehee). My friend Katie, you have given me strength and support that I never expected. Thank your for the love that you, Marco and the girls share with us; Marc, we know how you hold Tessa is your heart and it makes us love you all the more. Eric, your emails are eloquent and kind, and your sense of humor when we see you is buoying; Jack you are a wonderful spirit. Thank you Roos clan for rallying and lifting us up in this time of need. To my friends and all the amazing people who have reached out to us, thank you. I know I rarely get time to call, but your reaching out, the photographs, texts all mean so much to us.

My Roos family

As for what's going on this side of the central coast...

It's hard to believe how busy we are accomplishing nothing. Everyday is a whirlwind of activity. Because Tessa has so many doctors from so many different specialties looking at her case (let's see...we've got oncology, orthopedics, infectious disease, gastroenterology, rheumatology, immunology, genetics, pain clinic, complex care, endocrinology...what is that 10 specialties? And I know I'm leaving some out) it is a never ending parade of doctors in and out the door.

My IV pole has more machines than yours!

On Monday Tessa started steroids. These will address the inflammation in her body that is what the doctors think is causing so much bone pain. There has been talk of boosting her dose from the 2mg/kg/day to 30mg/kg/day which is a HUGE dose. The idea would be to blast the inflammation and see what happens. Fortunately things got thrown in the mix and caused a delay (which is par for the course we have discovered). Yesterday Tessa woke up with a big smile and spent the day walking around for the first time in weeks! Today she couldn't run around enough. She has been naked for the last couple months because of how hot she always feel, but we do try to insist on at least panties and shoes for outings. Needless to say she got more that I few smiles as she ran up and down the halls of the hospital in her pigtails and panties! Because she is exhibiting such a great response to the lower dose of steroids, we are re-evaluating the pulse. She will be getting some labs drawn in the morning to measure her SED rates (measures inflammation), and after that we may actually get to leave the hospital for a few days!

On Tuesday Tessa had a PICC line put in, which is a semi-permanent IV that is placed in the arm and run to into her chest where it accesses the main blood supply. It required sedation to have it placed, but it never goes bad and you can draw blood from it and use it for fluids and medication. This means NO MORE POKES! What a relief.

We will be staying in Los Altos through the weekend, as Tessa is scheduled for some rather uncomfortable procedures on Tuesday of next week. To address her mysterious, ever-present stomach pain gastroenterology is going to do both an endoscopy (camera scope down her throat to check out her stomach) and a colonoscopy (pretty sure I don't have to explain that one). For some reason these procedures make my stomach twist in a way that others haven't. I guess it seems so invasive of my beautiful little girl.

We're hoping that she continues to show improvement so that we can go home to SLO after that. I haven't been home in a month, and it feels as foreign as everything else at this point.

Love to you all. Thank you for the support and prayers.

Tessa loves reading books with her DeeDee!!!

Happy Anniversary

I'm lying here on my fold out cot thinking about what tomorrow represents. It is the two month anniversary of the morning Tessa woke with her first knee pain. It also marks the beginning of a second week here in the hospital. These are not dates I wish to mark on my calendar or celebrate, but they lurk significantly in the corners of my mind. I haven't left the hospital grounds in seven days, and there are times when I forget there is even a sun shining out there. But I am grateful to the nurses and doctors who are here for us. The nurses in particular are our angels, and I have a respect for the women in this profession that I never could have fathomed without this experience.

Tomorrow will also mark the fifth day in a row that Tessa will have to fast in hopes of getting either a CT or an MRI. There is an overwhelming amount of construction being done on the children's hospital, and a month ago their MRI room was flooded. Now they have to share the two machines that the general hospital uses, and with previously scheduled patients and emergency procedures it has been virtually impossible to get in. They decided yesterday to scrap the MRI and try to get her a CT instead, but the theme of this perfect storm continued. The CT broke down and the technician couldn't be here until 5, at which point the anesthesiologist would be gone. So another day with no scan. Meanwhile Tessa can't eat or drink just in case they can fit her in.

These images are important because the team wants to start her on steroids. However they need to be sure that there are no masses (e.g. tumors) in her body as steroids would then effectively derail any possibility of diagnosis. Fortunately the team decided to get her a chest x-ray and abdominal ultrasound today. The ultrasound showed lymph nodes in her tummy in addition to some thickening of her bowel. This has made getting her a scan even more of a priority as these findings have postponed the administration of the steroids. The nurses are as furious and flabbergasted as we are at the unacceptable way Tessa has been put on hold, and quite frankly if she doesn't get her scan tomorrow I'm headed toward Radiology myself with guns blazing. The only reason I haven't done it so far is that it really isn't anyone's fault-there just isn't enough equipment. I already am gearing up for a conversation with Patient Relations come Monday morning.

Beyond this little drama, things are getting worse for Tessa again. The bone pain is returning and the tummy pain is escalating. She needed a couple doses of morphine again today on top of her maintenance medication. I'm not sure when we'll get out of here. Casey is headed back to SLO for a couple of days of work (gotta pay those bills somehow), and Tessa and I will miss him terribly. It is so much lonelier to do this when he is gone.

It's late. The hospital lullaby of crying children, clicking and beeping IV monitors, and the foot traffic of nurses is lulling me to sleep.

Keep the emails and messages coming, they are my only link to the outside world and makes this journey a little less lonely. Thank you to everyone for your love and kindness, it would be so much harder to bear this without each of you.

Hospital Sweet Home

This is day five of being in the hospital, and it's starting to feel like home. The good news is that Tessa woke up on Thursday a new girl. She's smiling and even walking a little

It seems that the methadone has finally kicked in and she's in significantly less pain. I almost cried yesterday when we woke up and she had this huge smile on her face. She is no longer needing the morphine, so she is alert and her old charming self.

On Wednesday afternoon there was a huge meeting with all of the specialties. There were over twenty people present (the hospital social worker told us it was the biggest care conference she had ever been to). It was basically a huge brainstorming session. Everyone weighed in and suggested things they want to test for. The last two days they have drawn the maximum amount of blood allowed and today they will be drawing more than the maximum and then giving her another blood transfusion to fill her back up. She will have one more blood draw tomorrow, and then she will have given enough to satisfy the requirements for all of the tests they want to do. The bone doctors at the conference felt that the presentation didn't look like a metabolic bone disease to them, so it's less likely that we'll be heading to LA at this point. We've been trying to get an MRI for her for the last 3 days, but due to some flooding they are down to a few machines. Tessa has had to fast everyday only to find out that they weren't able to fit her in. So today they are canceling the MRI and sending her in for a CT instead to get the images they need. They will probably start her on a round of steroids tomorrow to see if that will help her feel better. That will run for 3-4 days, and then the hope is that we can go home.

Beyond this we will be waiting for test results; we know so far that she doesn't have HIV. Phew. The doctor told us that if we still don't have any results in two months we'll probably head to NIH in Bethesda, Maryland. The NIH clinic is renown for dealing with hard to diagnose cases. In fact it is the clinic which the show House is based on, and for some reason I find that to be less than comforting.

Anyway...here we are making the most of our new home. At least we have our own TV, internet and room service (even though the food is a few steps down from appetizing). Love to all!

Here and Back Again

We've spent the last week at the ever generous Noni and Papa's house. After being released the day after surgery we resumed our battle with Tessa's pain. The methadone seemed to make little difference, and after talking with several doctors the dose was increased twice. Despite this she still required her maximum dose of oxycodone every two hours, and still she was in pain. It's agony watching someone you love have to suffer so much, and it's only made worse by the fact that she's so small and defenseless. I keep thinking, she hasn't even had time to do anything wrong in her life-she's never hurt anyone or made a bad decision, why does she have to go through this? But that is just one of the multitude of thoughts that make this experience that much worse.

Casey and I spent the week trying to keep her comfortable (and failing miserably): waking every few hours at night to try and stay ahead of the pain, draping her head, tummy and feet with wet cloths that need constant refreshing and ice packs for her arm, hands and knees. Casey went back to SLO on Sunday to get in a couple of days of work (government assistance will only get you so far). On Monday I made several calls to the Pain Clinic to let them know that Tessa was still suffering way too much and to report how much medication she was requiring just to avoid the back arching toe curling pain. Later that afternoon I got a call back from the pain doctor who said that the rate at which her medications were being titrated and the dosages that she was receiving puts her at extremely high risk of overdose and death and that I needed to bring her in to be admitted immediately. So there I was, all alone, racing around packing a bag and trying to get everything we would need, got her into the car and raced over to the hospital all the while checking to make sure she was breathing. One of the more stressful moments of my life.

Tessa and I are now safely ensconced back at the hospital where she seems to be doing relatively well. She has a pretty decent cocktail of morphine, methadone, toradol (super-duper ibuprofin), ativan (anti-anxiety), and atarax (for the itching all the narcotics cause). She finally got a good nights sleep last night. Yes, I slept a little but come on people, hospital cots are not the most deluxe accomodations. I'm going to need a four hour massage when this whole thing is done.

We've got doctors from Infectious Diseases, Immunology, Endocrinology and Psychiatry coming in this afternoon to see her. Endocrinology is presenting her case at a conference this afternoon. As for Psych, they are here for support. Tessa has a fair amount of anxiety now because of everything she has had to deal with, and she's starting to look like the PTSD poster child (that might be a slight exaggeration but not by much).

Tomorrow she will be having another MRI and some x-rays. For some reason they like to schedule the MRI's for as late in the afternoon as possible so that she has to fast for like 24 hours on top of everything else. Don't get me started. These are the only times I'm grateful she has such a small appetite. There is going to be a huge round-table discussion about Tessa tomorrow afternoon involving all of the specialties that have seen her to see if they can come up with any new ideas and a plan on how to move forward.

Thank you all for your prayers and support! Jennifer Hinson, you are an angel. Thank you so much for your gift, we are very grateful. Thank you to all of the family who has rallied to make Tessa smile. Thank you to Dee Dee for dinner last night, and an advance thank you to Katie (and Marc), Sam, Elle, Noni, Jennifer and Michelle for bringing us lunch and smiles this afternoon. We love you all!!!

Diagnosis: Part...Oh, forget it

I thought I had it bad when Tessa was just born. Waking every 3-4 hours to nurse her, diaper changes, exhaustion. I had no idea. Woke this morning feeling as though my head was a glazed donut: fluffy, filmy on the outside, and a gaping hole in the middle. We've been waking up every 2-3 hours to administer meds, carry Tessa back an forth from the bathroom (she's been unable to walk for about a week and a half now), wetting the cloths, getting milk, ice packs, etc. I get about 3-4 hours of sleep a night spread out over 8 -9 hours or so. Something you should all know about me is that I like my sleep. I NEED my sleep. Without a solid 8 hours of sleep I turn into Mr. Hyde's creepy sister. Now I feel as though I've managed to keep my composure fairly well, but the sleep debt is mounting and I'm losing my cool. One might even say that I was a bit "bitchy" with the doctors today.

That brings us to the day's adventures. We'll leave out the bit about Tessa's misery as I'm sure we're all well acquainted with what that looks like by now. The fabulous Auntie Katie brought Sam and Elle, and Tessa's new honorary cousin Jennifer over for a visit. Jennifer and her sweet mom got Tessa a totally adorable doll sized pair of flannel pjs and sleeping bag. Thanks ladies! Tessa is so happy that Apple Dumpling Tessa (her baby doll; yes she named her herself) can sleep next to her in bed because she is no longer "pokey" in her new sleeping bag!

I'd also like to add that yesterday Tessa got a visit from a couple of her other fabulous cousins, Haley and Alyssa. Not to mention the fantastic Auntie Julie! I'm told they read to her and made her smile (as they always do). I don't know since, upon their arrival, I announced that I was going down to bed. 

At noon Nana, Poppie and Auntie Jenny showed up and we all caravanned to the hospital. The first thing we did was get a blood draw. It seems as though we can expect that nothing will go smoothly. Blood draws are particularly stressful for Tessa. We apply the lidocain cream to the crooks of her elbow about an hour in advance to numb the area. The pokes are not painful as a result, but she still becomes highly anxious escalating to panic once in the chair. For some reason all of the poor lab technicians feel like they should try to charm her before sticking her in the arm. As a result Tessa is sitting in the chair on Casey's lap shrieking and hyperventilating, the technician is making small talk like "Hi! What's your favorite color?" or "My name is Coco (all names have been changed to protect identities), how are you?" and I'm glaring at them muttering "Can we just do this?" Not pretty. Today the technician, let's call her Fumble, took around ten minutes just locating a vein. When she got the needle in she filled up one syringe (they take a LOT of blood for all the tests they run). Fumble kept messing around with the needle until it freaking fell out! Um, really? I'm holding the poke sight closed and have blood all over my hands and she says, "Oops! I didn't get enough." So she has to go into the other arm. I'm pretty sure I don't need to explain what the sleep deprived creepy Hyde sister wants to do at this point. 

Anyway...

Tessa is fully traumatized at this point and won't let me go. We go into a consultation room to meet with the doctor to get results of the bone biopsy. Every time a nurse or doctor walks in Tessa freaks out. She's exhausted and in pain. She finally falls asleep in my arms. A small while later one of the oncology docs who is filling in for our primary doc (whose been out all week on vacation) comes in to report that at this point there is nothing new from the biopsy. Why am I not surprised. We give her the low down on what has been going on lately, and she becomes concerned when we start talking about some of Tessa's new behaviors (frequently jerking awake in fear, twitching when she sleeps, irritation). We try to impress on her the level of trauma and pain that Tessa has gone through, but she remains unconvinced and brings in a neuro doctor. He does a quick assessment and concludes that her brain is probably fine and that she's been through hell. 

Our day wound down in the Pain Management Center where we met with a wonderful doctor who we met on Monday night. She was the anesthesiologist for Tessa's surgery and stayed to talk with us extensively that night. We requested that she be on our pain team and made the appointment for today. As of tonight Tessa has started taking Methadone. Most of you will know this drug as the one that is used to ween heroin addicts. For our use it is a long acting pain relieving agent. Once the drug is fully in her system (about a day and a half) and we have the right dose she will only need to take it twice a day, as opposed to the short acting Oxycodone every 2-3 hours. We will still be giving her the oxy on an as needed basis, but we are hopeful that this will be greatly reduced. Most exciting is that her pain will be better controlled, she'll be feeling good, and best of all we can all get some sleep! 

Ok, I've rattled on long enough. Get back to real life people, but keep us in your thoughts and prayers!

Third Time's a Charm (We Hope)

Finding a moment to do anything is becoming increasingly difficult. I try to get some sleep when I can, but most of the time Tessa is gripping my hand. She has become more fearful, not wanting me to be farther than wrapping my arms around her. Last night she would jolt awake calling for me; when a nurse or doctor comes into the room she begins to whimper "what are they going to do?", like everything else it's heart breaking.

We were discharged from the hospital on Saturday, and Casey and I decided it was time that we took control of her med schedule. We messed around with it until we found a formula that seemed to keep her pretty comfortable. Saturday night we got to see Auntie Dee Dee, who had her magic book bag with her (love that Dee Dee!), Uncle Mike and Dylan. They brought us a wonderful dinner, and hung out. Later Katie, Marc, Sam and Elle came over much to Tessa's delight. She thinks the sun rises and sets with all of her cousins (I kinda agree).

On Monday we were supposed to get a bone biopsy. All that we knew was that we were going to be squeezed in at some point that day-probably later than earlier. Casey spent all Monday morning and early afternoon on the phone trying to find out when we were supposed to be there. The biggest hitch was that Tessa had to fast from the previous night-no food and only occasional sips of water. The fabulous Sam, Elle and their friend Jennifer (who Tessa is still talking about) entertained her for most of the day, for which we are so grateful. They finally called us in at 3:30. We got to the hospital at around 4 where we waited until 6. They finally brought us back to get Tessa prepped. Sadly, the premed that they give to kids before the sedation (to make it easier and less traumatic when they are laying on the bed with the gas mask on) no longer works for Tessa thanks to the huge amount of opioids that she takes on a daily basis. So we wheeled her back to the OR where we have to restrain her while they hold the gas to her face. Then they tell you to give her a kiss goodbye. Why do they do that?

This biopsy was different than the previous procedures which were aspirations-poking a big needle through the bone and trying to suck stuff out. This one was an actual surgical procedure. They made an incision in her left femur, cut out a piece of bone and scooped out as much marrow as they could; think melon baller. When we got to the recovery room it was 8 and she was waking up with doctors and nurses scrambling around her. We were pissed because we had always been there with her before when she woke up and we had been very clear that this was something that we were adamant about. She was crying and screaming from the pain, and they loaded her up with dilaudid and fentanol. She was still miserable a half an hour later and she got a big dose of oxycodone. She was finally able to calm down and fall asleep, but she would stop breathing and had to have the oxygen on blow-by. They didn't feel comfortable releasing her, and at about midnight she was admitted for the night. So Tessa and I had another night in the hospital.

We're back at Noni and Papa's house now, she's hurting badly and getting loaded on pain meds. We are just trying to keep her comfortable. Life is lived minute by minute, dose by dose.

We're hopeful that we will have some information from the biopsy sometime in the next couple of days and that it will yield something informative if not conclusive.

Thank you all for your prayers and support.

Shaken, rattled and rolled

Is it possible to live a lifetime in a day? Of course it is. After today I'd be tempted to say you can live a lifetime in 8 minutes. That's how long you have to wait until you can hit the morphine delivery button to get another dose. I wouldn't have believed that the hands on a clock could actually stop until today. Last night was another experiment in torture. Though everyone here at Lucille Packard Children's Hospital (LPCH) is as kind as the day is long, Casey and I have removed to rose colored glasses. Tessa slept soundly last night until 2:30 when she woke up in agony. Over the next couple of hours I did my best to get her any relief. The doctors were slow to increase her dosage, but I came out swinging. Still, it wasn't enough. The nurses wanted her hooked up to all kinds of wires to monitor her after the dosage increase, but she was already in so much pain it was just kicking a downed dog. I told them she needed more, but they were slow to respond. Finally she passed out at 6 this morning and we both managed a few more hours of sleep. Once again she woke to the cruel bedfellow that has become all to familiar to her in the last month and a half. Again, it was like drawing teeth to get the doctors to move in the right direction. She suffered all morning and afternoon. They told us that likely she was stressed, and wanted to giver her Ativan, an anti-anxiety drug. We balked saying that she was stressed because she's in PAIN! But after the team talked it up we decided to give it a try. Between the ativan and the dilauded she became totally out of it. She was exhausted but couldn't sleep, her eyes rolling back in her head only to snap back time after time. We tried to take her to the play room, but five minutes after arriving she threw up the only thing she had eaten all day.

When we got back to the room we said we wanted to talk to the Pain Team. When they got there I unloaded telling them that she had been in less pain when we had her at home. I told them that since we had gotten here she had suffered more, experienced more discomfort and nausea than at any previous point. They decided to overhaul the plan and put her back on the oxycodone and tylenol at a much higher dose.

She is finally asleep, and I'm hoping that we are both going to get some rest. She is scheduled for another bone marrow biopsy for Monday, this one in her femur. After that she is going to be put on tetracycline (an antibiotic) for a couple of weeks as part of preparations for a very specialized type of bone biopsy that will be performed in LA. We are hoping and praying that we get the pain under control quickly so we can take her back to Casey's parent's house tomorrow and avoid any more time in the hospital.

I'd like to say thank you to everyone for the gifts that you have given to Tessa and our family. I have made no attempt at thank you cards, and I hope that you can all forgive me. Linda and family: thank you so much for the Dora care package, Tessa hasn't been without the blanket since she got it!; Kristin and family: thank you for the butterfly observation kit-we can't wait til we can get it going; Ruda: thank you for the coloring books and sticker set; Jennifer and Co.: you guys are amazing, Tessa opened your care package today-great stuff for hospital bound girl!; Kristy: thank you for dinner and your amazing reading skills, it was such a relief to see her smile and engaged!; Katie, Marc, Sam and Elle: thank you for dinner and your ongoing love and support, your girls are magic. If I have forgotten anyone I hope you can forgive me. If I'm not returning texts or answering calls, be patient. I love hearing from you all, but at times I fear that if I open my mouth I'll start crying and never stop.

Pray for our girl, she is in the dark night of the soul.

Pain

When we arrived in the Bay Area on Sunday Tessa was starting to feel pretty good (relatively speaking). She had a few good days, running around at the park and only low grade pain. I even took her to the San Jose Children's Discovery Museum where we met Nana and Poppie. She played all day, running around and having a blast! 

That night she was assaulted by pain of the same magnitude that sent us to the hospital a week and a half ago. After four hours of unbelievable torment she finally fell asleep only to wake up screaming and crying again this morning. We brought her to Standford where they admitted her, and from where I now sit in a dark room on another hospital cot writing to you. Our time here is with the primary goal of managing her pain and figuring out how we can manage it at home. To this end we are working with the Pain Team. Yes, there is actually a Pain Team, and no they don't dress like super villains. She is currently on a cocktail which has kept her from the worst of the suffering and includes dilaudid, a derivative of morphine. 

Stepping back to look at the bigger picture is far more frustrating. She was seen by Rhuematology and Hemotology, which can be added to a growing list that now includes Endocrinology, Oncology, Orthopedics, Pathology, and others that my exhausted brain can't recall at this late hour. The Hemotologist whom we saw today has been working in the field longer than I've been tromping on this earth, and seems to be a wise old soul. He told us today that whatever it is she has is pretty rare. This is no big surprise given the brains that have looked at her, and the number of people across the country who are drawing a blank, but it still makes my heart lurch. 

Today I have embarked on the anger stage. I'm pissed that my poor, beautiful girl must suffer so much before she has lived long enough to get her kicks. I'm pissed that no one knows anything about why her bones are so thick, why they are dying in places, why she is in so much pain, or any of her other symptoms. It was bad enough that there was something wrong, but now it's something that some of the top brains in the world may have never seen before. I'm pissed that I can't take it for her.

Torment

I feel like we're living on an island. I have been overwhelmed by the kindness of people, and in some ways I feel more connected and supported than ever before. But despite this, our lives have become so different that it seems that real life is going on out there, ebbing and flowing, moving swiftly around the bubble in which we live, but not touching us. I spend my days watching for the fingers of pain to infiltrate the beautiful, delicate body of my baby. Trying to beat it back with a barrage of medicines. In the fleeting moments when she isn't hurting I try to squeeze in a moment of fun, trying to remind us all that she is still a child and that her life is supposed to be carefree and filled with joy.

But the nights are the worst. Tessa sleeps with us, carefully sandwiched between Casey and I. This way we will always be there when she wakes at night and we can more adequately watch her. Last night Casey and I watched as she whimpered in her sleep, softly crying out "it hurts". It is torment. Do you wake her and let the pain crash over her so that you can give her the medicine, or let her sleep where the pain is ever present but muted? When the cries became louder we woke her. With every scream your heart breaks open. We give her the medicine, but of course it takes time for it to work. Her toes curl under and her back arches as the pain wracks her body. She is furious about what is happening to her and climbs out of the bed, storming into the hallway. I sit in the hallway, giving her space, and the pain is too much. She crawls back to me to be close. I sit with her there for a half an hour. The whole time she is crying and screaming and beating the floor with her feet, because her arms hurt too much to lift. And I wish I could cry and scream too. When the medicine finally kicks in she is spent and I carry her back to bed. As we lay there, her eyes closing, it begins to rain. It feels as though the heavens are weeping for us, because we have to be strong for our girl. As the lightening flashes across the sky I feel the screams that are bound within me loosen. The tempo of the water on the roof is cathartic, and we all drift off in exhaustion.

Mr. Toad's Wild Ride

I feel so grateful to all of you. Life is made easier by the support and love that we have gotten from everyone. Case in point, my amazing cousin Rachel. Rachel spent all day Sunday, Monday and Tuesday at the hospital with us. She drew picture after picture, made the babies talk, doing hair, making  jewelry and painting nails. She brought just the right combination of support, love and happiness to make the ordeal that much easier. Thank you Auntie Rachel, you are one of the most amazing women I have ever met!

The all-talented Dr. Rachel

Tessa sporting Auntie Rachel's handiwork

Life is moment to moment now. We can't really make plans beyond a couple hours ahead, and even then they often change as the situation changes. On Tuesday morning we were discussing possibly going home, by early afternoon we were sure we'd be spending another night in the hospital and transporting Tessa by ambulance to Stanford the next day. By late afternoon Tessa was feeling so good we took her for a ride in the stroller outside to Santa Rosa Park. She was so happy to be out of the hospital that she walked a little, went on the swings and down the slide over and over!

After this experience we rushed back to the hospital and decided to take her home. We checked out and got out of there. That night was rough, but not horrible. Today was spent dealing with insurance, tracking down prescriptions and managing her pain.

The blood transfusion has brought back color to her cheeks so she no longer looks like a cast-member of the Twilight Saga. She is happy to be at home, and so far we've managed to keep her relatively comfortable. 

The "plan" is to head up to Stanford on Sunday for some more tests, etc. We are looking forward to seeing the Bay Area branch of the family, and Tessa can't wait to see her cousins (so stay healthy girls!). Thank you all for your kindness, we'll keep you posted.

I've gotten some feedback that there are people who are not receiving the blog. A couple of these people I do have on the mailing list, so I can only assume I may have some wrong email addresses. If you want to receive the blog please post your email, or text/email it to me and I'll add you to the list. Thanks!