Friday, November 30, 2012

A Ruptured Appendix

Miss Julia doesn't want anyone to get bored. Today's excitement: a ruptured appendix. That would explain the very high white blood counts, and her agitation. As soon as the surgeons cleaned out her abdomen, her vitals began to improve. They feel that they were able to do a good job getting her well cleaned out, and she should start to feel a lot better. She has been back in her room for a while and Carrie was with her. She was having some excitement with fluctuating blood pressure, but was relatively stable when I talked with Carrie a few minutes ago.

More surgery

Hi All,
Please send extra good thoughts for Julia today. She has been having a rough day--very agitated earlier, blood pressure all over the place and a repeat CT scan showed something going on in her pelvis behind her bladder. Now she is in the OR so they can take a look--see the update from Grammie Jen below:

Hello angels! A busy day so far! I was awakened twice with flash flood warnings! Gets the heart pumping! The rain was definitely sounding like Noah proportions! But all was well and no floods to stop me from getting to see my little Julia! I have been kissing her tummy, fingers and toes! I didn't get to hold her as they had just brought her back from CAT scan of her abdominal. They have just taken her to OR for a laparoscopic procedure to get to the area behind her bladder that could be the cause of her high WBC. They are probably going to take out the appendix while they are in there! This girl is keeping us and the staff jumping!
We have the wonderful anesthesiologist that we have had before that reminds me of aunt nancy! We know our sweet pea is in good hands!
I will let you all know later what has gone on in the procedure and how's angel is doing!
Love you all and know your prayers are guiding the doctors right now!
Love til later
Grammie Jen

Thursday, November 29, 2012

Great Day

What a wonderful day! My little angel smiled a big smile at her daddy this morning and made him cry! Then she had her evd taken out! When they took her to surgery to try and biopsy and withdrawal the abdominal fluid they did a sonagram to know where to go and praise there was no fluid to be found! You are also amazing!
Carrie as you can see is holding Julia for the first time in 5 weeks! What a joy and gift! Glen said it felt so right to hold her that he sort of fell asleep! I guess she also gave Carrie a great big smile!
You are all as amazing as my little sweet pea! Thank you and keep those prayers coming so we see even more wonderful miracles!
I love each of you and know you'll be crying with me when I get to be there tomorrow! Not sure if I will get to hold her but will definitely get to kiss fingers toes and nose!
Have a joyous night. I love you
Grammie Jen


Wednesday, November 28, 2012

Grammie Report

My dearest Julia's angels, you are such an incredible band! Julia had a good day and they will repeat the CAT scan tomorrow before they take the evd out. They also scanned her abdominal area and are debating about the fluid they observed. We are hoping they will scan again and see if it is being absorbed or they may do a needle type biopsy and see what's cooking. Hopefully it will be an easy fix and not invasive.
Carrie was able to come home today and we celebrated Julia's best buddy Finn's 2nd birthday at Francesca's . It was a lovely time. Now Carrie and Amanda are getting excellent sleep. Hopefully Glen will get some too!

Terry, Kevin, and Peter [Julia's grandpa and uncles] went to get our car and had a nice visit with Julia and Glen and Carrie. Terry says Julia was doing great and he kissed every toe for me then read her stories and worked her hands and legs. He said it was great! I am hoping to see her on Friday before I go home for the weekend. We still are going a day at a time but your prayers are sure giving us a great boost!
Hope you all stayed dry thru the crazy rain storm we had here, but it was a great day!
Love, hugs and blessings to you all!
Grammie Jen

Tuesday, November 27, 2012

Nightly Update

Good evening our faithful and most excellent and diligent angels! You are all so extraordinary!!! Julia and Carrie had a good night and a busy morning. Julia continues to baffle all the docs with her elevated WBC. This is the third or fourth time she has done this. My theory is that it spikes because she is scared and confused! They feel her bowels are working and her abdomen is soft and pliable. They will scan it tomorrow when she has her cat scan to check her ventricles. They clamped off her evd which is the external shunt and she seemed to be in pain which is evidently normal and the docs liked her using facial muscles - for Carrie not so great! They are giving her Tylenol for the pain. It took Carrie over an hour to calm her down but we are excited at all that is happening.

If the cat scan is good she will have the shunt removed and Carrie will be able to hold her!
That is such a joy to us all! I am washing a big soft blanker for Carrie to hold her in.

Amanda is doing great being back at school and Glen has been trying to get some rest! 
Carrie just called and Glen is leaving now as Julia's oxygen saturation is taking a nose dive! Not good so Glen is on his way! So new problem for you to work on and hopefully it will be rectified quickly!

Bless you all and thanks for supporting us on this journey!
More tomorrow !
Love Grammie Jen
And a later night update: Glen is back at the hospital with Carrie and Julia. Julia's oxygen levels were having some severe dips, but the doctors are theorizing that this is a result of her being upset and holding her breath. While this is both scary and sad, it may actually be a good indication that her level of consciousness is improving.  Poor girl is agitated, and who can blame her. All the more reason to hope that she can be snuggled in her parents' arms very soon. 

Sleep well, 


Monday, November 26, 2012

Grammie Report

Nightly news on amazingly wonderful Julia! My precious little one had a good day! She pooped big for Daddy and Aunt Bill and then saved a small one for Mommy. I told Carrie that maybe she will have more normal size poops and not just big blow outs! Aunt Bill kept her company and worked her muscles and got her to sleep for 1 and 1/2 hour nap- much needed! He was so great to stay with her while Glen came home and Carrie went to Oakland! 
Carrie and Amanda both got a good nights sleep last night and Amanda had a good day back at school. Now ready for a good night for Glen and Amanda. Hopefully Carrie will get some sleep in PICU with our sweet pea!
Carrie took the staff some treats and I guess they are enjoying them as I write!
Another exciting thing is that they are testing the external shunt and hope to be able to take it out in a couple of days. That would be fabulous and no permanent shunt - Carrie would be able to hold her! Here's hoping and praying that it goes without a hitch!

I hope you all had a wonderful day. It was cold and then beautiful after the fog burned off here. Good bike riding weather which Amanda indulged in! Yea! By the way we do have hot water and heat both! A nice pleasure!
Sleep tight my angels. Chat tomorrow!
Grammie Jen

Sunday, November 25, 2012

Nightly Update Cold Water Edition

My wonderful angels, you gave us three poops yesterday but we need some today!
I was able to have five hours with my sweet pea this afternoon and it was so good to see her and kiss all toes nose and fingers and belly. She was very tired and they are trying to find out why her hemoglobin is low and WBC is up again! Could explain her being tired! She has a great nurse tonight which us good for all!
I brought Carrie and Amanda to their house tonight so Amanda can go to school tomorrow. We don't know how long Carrie will stay as she is already worried. Luckily Francesca made wonderful soup for us and helped us try to get heat and hot water. 50% was the best we could do. We have heat and are trying to get PG&E to come out tomorrow to help. Luckily they do cold water washing but it is cold! We may be showering at Francesca's tomorrow. Not big in the overall scheme of things. Hopefully all will rest well and tomorrow will be an awesome day.
We love you all very much and appreciate you!
Love you
Grammie Jen

Saturday, November 24, 2012

Good progress

Hello to all of Julia's circle,

Once again I'm posting from my phone, so forgive the errors! Julia had a good day today. One of her Broviacs came unthreaded and infiltrated, but they caught and removed it quickly and her other two lines are still working well. She was off feeds for a while, but is now getting the milk Carrie has worked so hard to pump. She pooped three times today! She got to hang out with her Nona, Aunt Samantha and cousin Molly while Carrie and Glen spent time with Amanda, and tomorrow Grammie Jen will be back in kissing range--watch out toes! She has been successfully off the ventilator again since yesterday morning, so there is now room for a sleeping chair next to her bed and Carrie or Glen can spend the night with her.

Wishing everyone a wonderful night,

Friday, November 23, 2012

Good Progress Today

A good day after Thanksgiving to be thankful! Julia was taken off the ventilator this morning and is working hard on her own! Big news - she just pooped a few minutes ago! She waited til mommy and daddy got back! That's my girl!!!!

We were very blessed that our good friend Bill Hartley gave Glen and Carrie a break and stay with Julia from around 1 until about 6. They were able to spend the day with

Amanda and Glen's family at a nearby park. We were all excited to have not only a trusted friend but he is a nurse practitioner! The best of two worlds! He kissed her toes for me and sang a lot if Puff the Magic Dragon! He had only just left when she pooped and they are having a little problem with the broviac in the chest. Hopefully it will not be a major problem. Carrie was so excited about the poop and is now having to worry about the broviac. A crazy ride!

Your prayers and messages and thoughts and virtual hugs mean the world to all of us and you make this journey doable!

I treasure each of you more with each passing day! I hope you all enjoyed this incredible day.
I love you
Grammie Jen

Thursday, November 22, 2012

Thanksgiving Day Update

My dear angels, I hope you all had a blessed and wonderful day. There is so much to be thankful for both big and small!
I was thankful that my little sweet pea was doing better and had a lovely massage from her Nona and even though it is extremely hard she is becoming more aware and therefore more agitated when those she loves are not with her and that is a new challenge for her and those that care for her. She is trying a tiny bit of nourishment in her ng tube and we are told there are faint bowel sounds so we are back on poop patrol! 
 We need to send resting vibes to my Carrie as she struggles with a sadder little one when she is so tired herself. I hope she can get back her sleeping chair as it got appropriated by others last might! Too many sick kiddos at the PICU! 
Julia was getting her Mona Lisa smile this am and hopefully tomorrow a smile will appear!

I was blessed to have a lovely time with Kevin and Kelly and her family. They did a phenomenal job on their first Thanksgiving dinner! I almost felt guilty for having such a lovely time while Carrie and my Julia were in the PICU! I look forward to having them both with us at Christmas! 

You are all such a wonderful part of my life and I am so lucky! If you do go out for madness tonight I hope you are careful and have a joyful non stressful time. I will be happily esconsed in bed!!!!

Love to all
Grammie Jen

Wednesday, November 21, 2012

Keeping Things Interesting

My dear Julia's angels, my update is from afar as I came home to Folsom for a couple of days. I am having a hard time not being within kissing range!

Julia had another interesting day. She somehow had the trach come loose and block her airway! I think it was probably way more traumatic for Carrie than for Julia. She did get a little blue but they fixed it relatively fast although to Carrie it seemed like an eternity! According to Carrie she is doing great now and had good color and eagle nurse eyes on her! That girl is keeping us all hopping!
Glen said she did great with ot and pt this morning and they are working hard to get her blood pressure under control. She seems to elevate her blood pressure when in pain so they are getting a handle on it!
I have been trying to get some things done here at home. I enjoyed making stuffing and two kinds of cranberry sauce with my Kevin and Kelly. We will be joining them as they host their first Thanksgiving dinner. It is wonderful. Carrie and Glen will take turns being with Amanda and Glens family at his stepsister's home. She has graciously been hosting Amanda all week! It really has been great for all of us!
Your prayers and love and thoughts continue to sustain us all. I am so very thankful and blessed to have you in my life!
Have a wonderful evening and a day of glorious Thanksgiving tomorrow.
Grammie Jen

Tuesday, November 20, 2012

Nightly Report

I'm posting from the car after a quick visit with Julia, so please forgive my typos! Julia was awake tonight when I saw her, and it was wonderful to see her big blue eyes wide open. Her swelling has come down a lot, both in her head and her abdomen. She had physical and occupational therapy today, which went well. She is following directions to move hands and feet and is able to move all her fingers, which is huge. She is still on the ventilator while her body deals with having aspirated and will be for at least a couple more days. The follow up tests for c. diff came back negative--yay! Overall, she is making slow but positive progress.

Her Grammie sat with her today and bathed her in love while Carrie and Glen spent time with Amanda. So much love surrounding this girl!

Thanks for continuing to hold her in your hearts.

Monday, November 19, 2012

Another Interesting Day

Sorry my wonderful angels that this is late! My precious girl had an interesting day. She was moving hands and feet on command and had her eyes open a lot. They had to put another Broviac line in and thus had another surgery. We were blessed to have an anesthesiologist that was great and reminded us a lot of Aunt Nancy. She did a great job and Julia came back more alert than after any other surgery. The bummer was that they had to put the line in her left femoral which means she has lines in both femoral and we are so afraid of the risk of infection when she poops. We want that but we have to pray for no contamination. She is still under care for c diff the first 24hr culture was neagative but we have to wait for 72 hours to be sure.
We were blessed to recieve a great number of beautiful angels from all over the US from unknown angels who are praying for our girl. We are going to line her crib with them watching over her!
I kissed her toes and fingers a great many times!

All your love and prayers are helping immensely!

Love you all and if I don't respond to texts or calls my phone delivered 98 text messages and a number of phone messages from several days tonight! Go figure!
Grammie Jen

Sunday, November 18, 2012

Late night update

Miss Julia seems stable tonight. Some test results came back negative for infection and the current theory is that she is dealing with fluid retention and paralysis of part of her bowel, which can be side effects of surgery and pain medications. Addressing these issues is a tricky balance but doable.
Wishing everyone a good night's sleep.

Rough Day for Julia

An update from Grammie:

Attention my loyal and wonderful Julia's angels! A down hill on the roller coast of returning to health. She is having big abdominal issues! She aspirated some bile into her trach and thus into her lungs. She is back on the ventilator to create pressure to keep her lungs inflated. She also has some kind of intestinal problem with a large amount of fluid buildup in her peritoneal cavity. They are testing for c diff [a nasty bacterial infection] and starting heavy duty antibiotics as a precaution! Therefore you are called into full service again. It has been a very tough 18 hours. Glen called in at midnight and was up with her all night. Amanda has gone to her cousins' house so she is in good hands and very happy. Unfortunately Terry's car broke down in the hospital garage so we will have it towed tomorrow morning and hopefully go from there. They are going to put antibiotics in the ng tube to help nail any bugs! So no feeding still!
Thank you all for reading this and standing with us! We love you all and are so blessed to have you in our lives!
Grammie Jen
A couple more things: the doctors were happy with her neurological exam this morning, and Carrie felt like she is starting to wake up a bit. She is opening her eyes a little and grimacing. Glen was able to sleep this afternoon, and the PICU is relatively lightly occupied tonight, so hopefully they can at least take turns getting some rest tonight.  She has a great deal of swelling in other parts of her body, but her head and face are less swollen, which seems to indicate she is healing from the surgery itself. The doctors are hopeful that she aspirated a small enough amount of bile that she will be able to reabsorb it without it causing any problems. Hopefully tonight will be peaceful and tomorrow will be a better day.

with love, 


Saturday, November 17, 2012

Grammie Jen Update

My little sweet pea's update! 
I have been lucky enough to sit with her this afternoon as mom and dad are with Amanda and our Christina and her two for the afternoon! We need to get on poop detail as my angel had to stop the feeds until she can go. She hasn't gone since surgery and was getting very uncomfortable. Hoping it resolves soon so she can get nourishment and get stronger. She is still exhausted and is sleeping a lot which is healing for her. She is still off the respirator and looks so much better today as her swelling of both her face and head have gone down.I have sung to her and kissed those little pea toes whenever she has opened her eyes! I am not sure if she goes back to sleep for comfort or to escape me! Go figure!

So my loyal warriors we need to go for poop along with the strengthening sleep so she can wake up and be strong!

I love you all. Have a wonderful evening and I will post tomorrow .
Love, hugs, kisses and blessings
Grammie Jen

Friday, November 16, 2012

A few more updates

Julia's surgeons continue to be very positive about her progress. They re-affirmed that they believe they got all but a microscopic amount of the tumor. At this point the plan is to monitor her closely, but not to do any kind of chemo or radiation unless the tumor begins to grow again. In the meantime, the focus is on helping Julia to heal from the surgery. She had seemed a bit agitated and uncomfortable, but was able to get into a deep sleep around mid-day and slept the day through with Carrie, Glen, or Grammie by her side. I got to see her for a bit too. So good to see her resting comfortably and to see her breathing on her own. It is possible that at some point soon they may be able to move a chair in with her so Carrie or Glen can sleep with her at night, but in the meantime they have their chairs reserved in the family room. Apparently those chairs are in high demand, so a careful eye is kept on them to make sure they don't disappear to another ward!

And from Grammie Jen:
My little angels update to all her big angels! She literally slept the day through which was excellent! I enjoyed sitting with her while Carrie and Glen got to get out for a while. I did get to kiss toes quietly and sing a tiny bit to put her back to sleep.
They are trying to get her blood pressure under control, but are thinking that it will improve as her swelling goes down, her little head is
quite swollen at the back but her face swelling has improved. When I think what that little one went through she is truly a miracle. 
I tried to get Carrie to come to my sisters with me to get some rest but she isn't able to be that far away yet . I may try to steal her away with Amanda tomorrow for dinner and bed! My sister is fab and was hoping that I could get her here for a break today! Here's hoping that Julia is doing better and she will give herself a break!
As always you make my heart full! Your prayers and thoughts so sustain us thank you one and all.
Much love
Grammie Jen

Sleeping and Healing

Julia basking in the warmth of the dryer.

An early update to our angels! Good work she is sleeping a lovely sleep! She is still off the ventilator and they are doing a 24 hour EEG to see if their is any seizure activity. Praying for the best! 

Carrie and Glen had better chairs last night and got some good sleep also! Yeah!

I quietly told her I was here and I haven't kissed those little pea toes as she is sleeping so nicely. 

Amanda is having a lovely day with her cousins and will be with me tomorrow and possibly go home with Glen on Sunday night for three days! We hope that it will work out and Julia will be stable so he can go! I will stay here to support Carrie and be available for Glen and Amanda if they need me.
It is always an entertaining event when Carrie sends Glen to get clothes for her from the car! Today he brought her my extra clothes from my car when he was putting the dirty laundry in my car! I love that he thinks my clothes would be small enough for Carrie!!! Entertainment is where you can find it!
I'll give you another update later.
Grammie Jen

Thursday, November 15, 2012

Grammie Jen's Update

My dear Julia's angels! I am sorry that I haven't updated you all yet today! My amazing sweet pea is truly amazing! She had a big MRI this morning and from the nurse practitioner we heard the tumor was nailed and there is only some microscopic traces left! Awesome! She is off the ventilator for a try this evening and her external shunt is turned way down as her csf is going where it belongs in the spinal cord! Praise! Wow she is so trying hard. Carrie and Glen meet with the surgery team tomorrow am and I'll give you an update tomorrow. She is moving toes and hands and eyes, we are hoping she gets some good healing sleep and tonight's transfusion and feeding to get some more strength to wake up and push aside that twilight curtain!
Once again I have to send my love and blessings to each of you and your networks! You are guiding the staff and supporting us all!
Sleep tight one and all we love you!
Love and hugs,
Grammie Jen

More good news

Julia had her MRI today, and the news was great. It looks like they got all but a microscopic amount of the tumor out. Those surgeons are truly incredible--what an amazing team. They are going to attempt to take her off the respirator tonight and see how she does. That will be a huge milestone!

Post Surgery Day One Update

Quick update for Team Julia:

Carrie and Glen had to wait quite a while to see Julia last night, but were able to go to her by about 12:30. The team was continuing to work on addressing some post-op issues and she needed some more stitches, but overall she was doing well. Carrie and Glen got about 4 hours of sleep, and were back with her this morning when the doctors rounded. A few quick points from rounds:

Overall they are very pleased with how she is doing--everything is how they would hope and expect for this point post-op. They are gradually weaning her from the supportive measures that happen during and after such a big operation, while monitoring her extremely closely. She is scheduled for another MRI at 11:30. She is getting morphine for pain and I think is under some sedation, but she is still responsive, opening her eyes a bit, breathing over the ventilator, regulating her body temperature and showing other positive signs that she is tolerating this huge surgery well. That's our girl!

Surgery Went Well

Now that I am back home and not typing on my phone,  a bit more of a detailed update. What a long day for Julia and her family, but everything went smoothly and very well. Carrie got updates from the OR about every two hours on her cell phone, and it was very reassuring to hear that Julia was stable throughout all of the procedures.

A couple of hours after we had heard that they were working on closing, two of the neurosurgeons and one of the nurse practitioners on the team came to the first floor lobby, where we had spread out on couches and chairs. The doctors were very positive about how the surgery had gone and how Julia was doing. They had performed what they termed a "very aggressive resection" of the tumor and felt that they had been able to remove about 90% of it, which, considering the challenging location of the tumor, was a great outcome. They will do an MRI tomorrow to confirm their sense of how much tumor might have been left behind. They still believe (although they are confirming with additional pathology reports) that the tumor is a very low-grade type, in which case they may be able to monitor it without needing to do any further treatment at this time. Potentially she may not need any treatment for several years, by which time she would be a better candidate for radiation. All of this is very good news. Also incredibly exciting to hear was that once they had removed the tumor she showed greater electrical conductivity in her brain. They were also able to remove the tumor from her spinal column and saw spinal fluid circulation restored--so while she has a temporary drain in place now, she may not need the shunt they were considering before.

Before the doctors left the OR they brought her out of the anesthesia enough to exam her and she was moving her hands and feet, which was wonderful news. She stayed in the OR so the anesthesiologist could work on placing a new arterial line. The line that caused so much trouble all day yesterday finally failed by the end of the surgery, so they were trying again. She also has a central line now, which should streamline some of her care.

The doctors were very clear that recovery from such a massive surgery is a matter of many months, not days or weeks, but they were optimistic about how well young children tend to do in this situation.  Words can't really convey how amazing it was to hear this!

Thank you all so much for the prayers, love and good wishes you have been sending Miss Julia and her family all day.
Out to lunch with Amanda near the hospital earlier today

Wednesday, November 14, 2012

Julia is a super star

Surgery went great. Best it could it have gone. Very good news. They think they got 90% of tumor. Julia did amazing. She is still in OR finishing up some "housekeeping" but they should be taking her up to her room soon . Thanks for all the love coming her way today and always.

Coming down the homestretch

Just heard from operating room. Julia is doing fine, it sounds like all has gone smoothly and they are wrapping up. They are starting to do the procedures to close, which will take about 1.5 more hours. Once she is in recovery the surgeons will be in to talk with the family.

Update from Grammie

They have just reached the tumor. Now they will start to work on removing it! She is doing fine and prays to the team and julia! we just walked 1 mile to fentons creamery for lunch! A interesting and yummy place! A nice break away from the waiting room!

Edited to take out the reference to the tumor weighing two pounds. It was quite large, but not that big. 

Brain Surgery Underway

The doctors replaced Julia's external shunt and have now moved on to the actual brain surgery.

First stage went smoothly

The surgeon who placed Julia's central line, or Broviac, called Carrie to let her know that it went in smoothly. Now they can move on to her brain.

Julia Update Part Two

Grammie's update gives a good sense of Julia's long day, but I just wanted to add my joy at seeing the progress Julia has made since I saw her last a few days ago. She is so much more alert, and those beautiful eyes were open and aware in a totally different way. She was wiggling her toes and moving her legs, too. She really wanted to be asleep, but unfortunately the arterial line they worked so hard to get in place earlier was acting up again, so the nurse was trying every trick in the book to get it working again. I think it was eventually resolved, so hopefully everyone will get some rest tonight. And you, too--I hope all of Julia's family, friends and fans sleep well tonight. Know that all of the support you are providing, the love and prayers sent, gifts, financial help, songs, chants, food delivered, special books and pictures, and more, all of that generous outpouring of love continues to help Julia and her family immeasurably.
Julia and Oliver at storytime. Oliver was watching the book, Julia watching Oliver. Check out that smile!

Tuesday, November 13, 2012

Grammie Jen's Update

My peanuts update! She is in Oakland and it is a bit tough but tomorrow will be tougher! They worked for over two hours to get blood and it was brutal! They finally put an aerial line in and she was exhausted and had tears coming down her face and a furrowed brow but they got it! Carrie sang to her and she relaxed and seemed soothed. They will put a broviac line into her heart tomorrow prior to
the main tumor removal. They are planning to start at 8 am and go til they finish! The team talked to Carrie and Glen this am and told them it would be a very long and slow recovery and to expect her to be worse at first! So very hard as she has been making slow but steady progress.
Francesca came tonight after I left so hopefully she is safely there. Oakland isn't very user friendly and we will be in the main lobby waiting area. Carrie and Glen are going to have lunch with Amanda and she will talk to the family life specialist at 2. It will be a long day. But we will get through it with the help of all our angels! Thanks for being with us! We love and appreciate all you do. I hoping we won't get lost again tomorrow like we did on the way home tonight! Oakland doesn't have freeway signs - very strange! Or maybe it was because it was very dark! Pray for us all and the docs and team and my little precious girl!
Hugs kisses and love
Grammie Jen

Monday, November 12, 2012


Update from Grammie Jen: 
My sweet pea is now in Oakland and a new learning curve and chapter has begun! My little Julia had a nice smile for Carrie last night when Carrie was singing and Carrie got a picture!! She also pooped but we think it was Carrie not the poop that caused the smile!
She made the transfer with a very large team that seemed very competent! There was an MD, 2 respiratory therapists, 1 nurse, 2 EMTs and Carrie how they fit
I know not! They had to stop to take out one of her IVs that had infiltrated and drain some csf when her pressure increased in the brain, but it was fast and good. Carrie actually slept the first hour of the ride!
The staff at Oakland is very good and competent! The bummer is that the PICU cubicles are tiny and there is no room for Carrie to stay next to Julia. She will be in the family waiting room with 5 other parents and 4 TVs which is a bit chaotic for my girl but it will be a learning curve. They do have showers available and a fridge so it will work out. Getting the rhythm is most of our new battle but as long as our girl is taken care of we are happy!

Your thoughts and prayers have saved me from totally losing today since I can't be there to protect my girls - so bless you!!! Tomorrow I will be able to get a clearer picture!
Love to you all and thank you for your continuing prayers.
Love and blessings my Julia's angels.
Grammie Jen

Sunday, November 11, 2012

Getting Ready for Oakland

Grammie Reports: 
Julia, my sweet pea is truly a wonder! Julia had two hours in MRI and they feel the tumor only went to c3 and no further in the spine! Yeah! She is definitely looking at us and I know seeing us! She wiggles her toes on command and moves fingers too! She sounded like she had a cough and the bite guard is off! That is really great! They were hoping to give her some blood tonight but couldn't get a vein. She was sleeping peacefully when Carrie and Glen got back from dinner and bed with Amanda. Amanda had a visit from her good friend Audrey from her baby group. They have been close for all their lives and it was so great for both. So nice of her mom to drive 2 hours each way for them to get to play! Carrie is blessed to have all of you and her moms group and so many more!
Once again I thank all of you and tell you how much your presence means to us and Julia! Bless each of you and I will let you know how the transfer goes tomorrow.
I won't go with them and will be there Tuesday so my love and prayers will follow them ever so closely !
Good night sweet team Julia!
Grammie Jen
Cute little pumpkins

Saturday, November 10, 2012

The Grandparent Report

Julia had a good day today. Here are updates from Grammie Jen and Nona. Grammie first:

My nightly update on my amazing wonderful Julia! I am sitting here with Julia and Carrie as Carrie reads the Cricket in Times Square to Julia. They both enjoy it greatly!
I have been kissing singing and massaging my sweet pea as much as I can! Glen went to my house to do night time and dinner with Amanda.

Julia was able to wiggle her toes when I asked and grabbed my fingers. She looked like
she smiled when Carrie was singing Shenandoah to her! Tomorrow are 2 hours of MRI s and off to Oakland Monday. I may not get to spend as much time if any with her there so I am trying to get my kisses in!
Carrie and Glen took Amanda ice skating in Folsom today which was fabulous! My wonderful Kevin and Kelly came and fixed the Internet and got dinner ready for all! A wonderful day all around!
Your prayers and thoughts continue to sustain us! Thank you all so much we so need it!!!
Love to each and everyone of you with giant hugs.
Grammie Jen
And from Nona: 
When I visited her today she was sound asleep. It was the first time I felt her sleep was deep and peaceful without getting medication to help her. This will certainly aid her healing which will help ready her for surgery. Her White Blood Count was coming down a bit and she continues to be stable. This is important for her to be transferred on Monday and have surgery on Wednesday. Her uncle Vince and Aunt Heather sat by her bedside as mom and dad took big sister ice skating. 

Julia at her 2nd birthday party, showing off her hot air balloon face paint