Sunday, December 30, 2012

Grammie's Update

My dear ones, you have been so patient waiting for news. I don't have an abundance but I do have some! Carrie said that the hives have gotten worse and they have been giving her Benadryl. They keep saying that it is nothing and we think it probably isn't, but Carrie told them there have been too many times from the onset that it was nothing and she wants a dermatologist called in. They will do it after the weekend. That as you know is the problem in hospitals, the weekend is a time when not much happens! They haven't called Children's yet as it is the weekend, but we hope tomorrow isn't still the weekend and they can call to see about getting her transferred. They have mentioned this week as she has been fever free for 4 days. Yeah! Carrie and Glen both had her practicing sitting up both yesterday and today. She has been doing great. I know that she will fly when they get her on her way. 

Amanda and Carrie went to Oakland Presbyterian Church for worship this morning and Amanda wants to go again next week. That is great. Carrie said the service was very good and the message was spot on! We all really were impressed by their pastor on Christmas Eve and she didn't disappoint.

I am missing all three of my King girls and look forward to going over after New Years. They are very lucky to have the use of Art's place that is only 10 minutes from the hospital. Amanda has gotten quite good on her scooter and is so enjoying it. She fell last week while playing on some bars and has a black eye and a swollen face and her nose bruise is now greenish. I guess it is lovely! Carrie said that Amanda looked in the mirror and stated how she was all better. Carrie thinks she must not know what she looks like!!!

We appreciate the swallowing prayers and you took care of the fever. Lets hope the hives take a Leave of Absence and she doesn't get too sad when ever Carrie leaves the room. Carrie is hoping to stay with Amanda tonight and Glen with Julia, we shall see if that can work out. Glen said that when Carrie left for church today Julia cried for quite a while. That is good and bad! We are glad that she is aware, but sad that she is sad. Sweet little pumpkin.

I love you all and appreciate you to the moon and back!
Grammie Jen

Saturday, December 29, 2012

Resting Girl

At last report my girl had a good work out in ot and Carrie had spent the night with her. She didn't have a fever, but she had quite a case of hives - something she had had a great deal this summer and fall. Don't know the cause and she is tricking those docs! I am sure that she will pass this and get on with getting better. I didn't get a chance to talk to Carrie or Glen this afternoon and therefore don't have much news - bummer. I will be talking to them in morning and will try to post and bring you up to date at that time.
Do love each and every one of you and your prayers and thoughts.
Grammie Jen

Julia resting after a fun and tiring PT session.   

Friday, December 28, 2012

Well, my angel had a good day with Aunt Bill and no fever! He got to see her smile for the first time and was surprised that she looked bigger! He also reported that he felt she was seeing something. He couldn't tell how much or what but felt she was and I have to agree as I felt that a couple of days ago. She was transferred back to the original room in the PICU as the window room was the overflow room and there aren't enough patients to use so back to the dungeon! The good news is that they are fixing it so Carrie can stay in the room tonight. That is very good news. Bill sent me a couple of pics of her and was sad that he didn't get one with a smile, but they are of him holding my girl and telling her how much she is loved. Love it!!!
We don't know when they will transfer her but are hoping it is soon. We really want the therapy to get into high gear. We know that she will excel!
It is very brisk and chilly here both all day and tonight. We were lucky enough to spend the evening with very good friends and had a wonderful time. It was nice to not be driving somewhere, but I have to admit that I miss all three of my girls - especially my sweet pea and kissing those toes!

Carrie was in Santa Rosa today and is trying to get Julia signed up for social security so that she can qualify for CCS and other services. We shall see what comes up. Carrie got back and is with Julia now and very happy that they are letting her stay in the room with Julia. They missed each other very much. Glen is with Amanda at Arts house and that is only 10 minutes away.

Am looking forward to exciting news of good things from Carrie tomorrow. I know that good things are unfolding, my girl is ready to get this behind her!!! She wants so stroller walks and practice using her hands and feet much more. The swallowing will also be worked on I am sure.
Love you all and thank you for your continuing prayers and thoughts. This journey is certainly made doable with your help.
Grammie Jen

Thursday, December 27, 2012

Grammie Update

My dear sweet angels, today my little one had a good day. she did well on Pt and OT and did a lot of smiling. Her fever was down and her ab cat scan came back clear. They are going to treat her as if she has pneumonia as they want to be sure that that is not the problem. It actually still might be a virus, but they don't know. We still don't know when they might transfer but we hope it will be soon. Carrie and Amanda went home for the night so that Carrie can go to social security tomorrow am. They will return to Oakland tomorrow afternoon.

It was great because Aunt Samantha and cousins Connor and Molly went to see Julia today and both Amanda and Julia enjoyed it. Evidently Francesca and crew are going to go over on Monday for a day. That will be awesome.
Carrie locked herself out of Art's place today and wonderful Laura drove over to Oakland to get her back in. What a wonderful niece I have although I already knew it!!!!

I had a nice time with my friends the Power boys and mom and went to the ice rink in Folsom. It was a very brisk day and the rink was crowded but the boys were awesome and after we went and played a very fun board game. A lovely day!
Hope your day was wonderful and I am also excited because I heard that Aunt Bill will be over to be with Julia tomorrow. I can't wait to hear from him and what his take on my princess is!!!!

Love you all and love your prayers. Stay warm and enjoy your day.
Grammie Jen

Wednesday, December 26, 2012

The day after Christmas and all was quiet! My little angel had a spinal tap that was clear -yeah! Her lung xray was also clear-Yeah! but she still had a fever and a high WBC- Boo! In spite of that she was a smiley girl and had a relatively good day. She is definitely frustrating the docs for sure! We don't know when her transfer will be or what the next course of action will be. We know that she is doing better overall and they will figure out what is going on. Carrie is staying with Amanda at my niece Laura's Art's house tonight as Amanda was having trouble not having Mommy with her. Glen is with Julia and we hope he is able to get some sleep as Carrie is returning to Santa Rosa tomorrow night to have an appointment with social security on Friday morning. We hope that goes well. The rest of the plans just change from day to day as the day progresses. We are just thankful for all the forward motion we have made and know that it will continue when we get around this bump!

I know that you are working on the swallowing and that is huge! The poop continues to go well and the smiling is fabulous. We see little glimmers of other things that are fleeting but when they are around more we will be shouting from the rooftops! 

I hope you all had a restful day and unlike my friend Joyce didn't have any flu flare ups as that is the pits. Stay well and we love all of you.

Take care and know you are blessed!
Grammie Jen

Tuesday, December 25, 2012

Christmas Update

I hope you all had a day filled with hope, peace, love and joy! After an excited realization that Santa had found us in the Oakland hills, Amanda found that she had gotten her razor scooter and even more exciting it had light up wheels!!! Santa even left a note saying that he had kissed Julia at the hospital but wasn't sure where she was going to be so he left her stocking with Amanda! Julia had an excellent night and a wonderful start to her day! She had visits from Grandpa and Amanda and Uncle Kevin and Aunt Kelly. I got over to see her at about 1:30 and then Uncle Vince, Aunt Heather and Grandpa Don stopped by. They took her off precautions and planned to transfer her today, then they changed their minds and said they would wait til tomorrow. I was lucky enough to have her to myself for the whole afternoon and we were great until 4 when she started to cry and get very agitated with a high heart rate. After about an hour I was getting quite concerned so the nurse and I got her back in bed and thought she had gotten a lot of body heat from me! Needless to say she had a fever of 103.4 and was on fire! We called in the icu doc and started putting cool cloths on her to cool her down. We gave her Tylenol in her ng tube and Carrie came back. They will be running tests on her and another chest X-ray tomorrow. It may be a virus so we will see - I think she was mad that they kept changing when they were transferring her and wants to go Thursday like they originally said!!!! We will see! By the time I left, the Tylenol had kicked in and she was her smiley cute self!! Still overall a good day! I am typing as we drive thru the driving rain to return home! It keeps us appreciating our comfy homes and dry clothes! We are so lucky! 

Hope you all had a wonderful day and stayed warm and cozy.

Your prayers and thoughts on health and swallowing are much a gift to us! We love you all and look for a good day tomorrow and a smooth transfer soon!
Grammie Jen


Monday, December 24, 2012

Christmas Eve

Merry Christmas to you all! Carrie, Amanda, Terry and I just came from the candlelight service at Oakland Presbyterian Church! It was a lovely service in a 100 year old sanctuary with a most magnificent pipe organ! It was a great service and brought to mind not only the magnificent story of the first Christmas but also wonderful memories of Christmas's past with all of our friends and family. It is amazing how strangers can become friends so easily!

We are now with Julia reading Christmas stories and cuddling! The best! Julia got very smiley at the thought of Grandpa eating Santa's cookies!

Julia had a good smiley day, playing with her big sister and doing a good job with her therapy! She finished her course of antibiotics, had a blood transfusion and had her broviac removed! Wow! She has a bit of hives and is in restriction since she might have a bit of something what we aren't sure! They are putting out cookies for Santa here at the hospital and we will put them out at the house where we are staying! Such excitement! Back to major kissing and loving!

Have a wonderful evening and a joyous Christmas!

Grammie Jen


Sunday, December 23, 2012

Dear angels, What a lovely blustery rainy day we had! It was a bit crazy but still a wonderful day. My Julia had a nice day, not as exciting as yesterday, but good. Her Nona, Aunt Samantha, Mommy, Daddy, Amanda and Grandpa Don all got to visit with her! That is one popular chickadee! Carrie said that she had a good day, but she was a bit tired. I think all the hoopla from yesterday wore her out. Amanda and Glen came and are set up to stay through Christmas at least. We are on our way to join them tomorrow and Uncle Kevin and Aunt Kelly will follow on Christmas morning! Zippy will not be coming(:

We hope you had a wonderful fourth Sunday of Advent and felt that it was filled with Love. Hard to believe that tomorrow is Christmas Eve. I am excited to see where we will be going to Church. Carrie is hoping to find a church with a childrens early service in the late afternoon as Amanda usually goes to bed by about 7. It should be interesting. I will try to give you an update tomorrow evening as you are enjoying your evenings. I am not sure whether I will have internet service so we will see.
You have all been so fantastic. I hope that you let yourselves be pampered and refreshed tomorrow as we await the arrival of Christmas morning. If you are celebrating some other holiday or none - I still send you my most heart felt love and good cheer and best wishes for your day.
Stay dry and warm and get plenty of rest!
We love you,
Grammie Jen

Saturday, December 22, 2012

Truly amazing

My girl is so amazing!!! Nona was with her most of today and had been noticing that her mouth was moving so much more and that she seemed so aware! Nona played the video of Julia singing Shenandoah and she was certain that Julia was mouthing the words!!!! What a Christmas gift and joy! I was so lucky to stop and see my little sweet pea this afternoon and she was definitely looking good and smiling a lot and I was so happy to see her and kiss her toes a bunch and love that chickadee! Aunt Nancy was there along with Uncle Tom and Carrie. Aunt Nancy stayed to help change the trach and then Carrie went with her cousin Laura to see Art's place that he is lending them for about a week and a bit. Laura got it all ready and Patty went to the store to bring in a few treats. What a wonderful gift. Not as exciting as Julia mouthing words but pretty darn special! Carrie was reading a story to Julia this evening and Julia definitely was mouthing things in the story! Miracle for sure!!!
You are all amazing also and working hard on my sweet pea. Keep working on the swallowing piece please! I know you can do it!!!
Remember that tomorrow is the fourth Sunday of Advent and we light the candle of Love. Hope Peace Joy and Love are definitely here for sure!
Stay warm and dry and enjoy the rest of your evening and your day tomorrow.
I appreciate and love each and everyone of you as do my whole family and especially Julia and her family!
Grammie Jen

Friday, December 21, 2012

Santa's Visit

My dear ones! My sweet pea had an excellent day! Her ab Cat scan showed the strange fluid getting smaller and looking better. She is off the blood pressure med for 2 days now and is doing well. Her bowels are working and no temp and good WBC! Yeah! She will go to Oakland children's on Thurs. They will have her in PICU for one day and then to rehab! 

She started smiling with teeth showing when I started talking to her and the kissing began! When I told her I wanted to hold her she smiled and kicked her legs! I was able to hold her for over 3 hours! As usual after major kissing and some singing she went into a deep sleep for over 2 hours and Santa even came and she smiled sweetly and slept through the visit of Santa and his cute firemen reindeer!
We are realizing what a long road we still have to travel but are so pleased with how far we have come thus far! You all have been so instrumental in the journey and we bless and thank you each!

I gave up my precious girl when her Nona came and took over. She reports that Julia slept for 2 more hours and then was very smiley and moving a lot. They had a lovely time.
Glen went home to be with Carrie and Amanda at her Christmas program which was very wonderful and Carrie will
be back in Oakland tomorrow. Grandpa Don is staying with Julia. I got to come see my mom and will spend the night here before going home torrow afternoon. 

We all will be in Oakland Mon and Tues to spend Christmas with Julia and Amanda and family! So looking forward to that! Have a wonderful evening and day tomorrow as winter officially begins! Love you all and love having your uplifting!
Grammie Jen

Thursday, December 20, 2012

Grammie Report

Well my patient sweet angels, you have been awaiting the news from the meeting etc. My sweet pea will be moving to Oakland Children's Hospital after Christmas. She will be there in their ICU for a day to train people on the use of the ventilator and her trach. Then she will go to the floor for her rehab. She will stay there as long as she is making progress and doesn't plateau! I am of course sure that she will excel mightily and not have to stay too long as she will be doing so well and not being static.

It sounds like a long process but I know with all the love and help of her band of angels we will make short work of it, in a manner of speaking!

She had her windpipe looked at today and found that her vocal chords vibrate which means no paralysis of them! Yeah girl! We are hoping that with that and swallowing prayers she will be able to function much better! We were very excited with that report! 

Glen said that she had a great day and they are trying to take her off the blood pressure medication and see how she does. She sat up in her special chair for around 3 hours which is fabulous. I think she is getting ready to see Santa when he visits the hospital tomorrow morning. We are hoping he will be able to see her and we can get a picture with him! We took Amanda to see him today and it was very lovely. She asked if he was going to see Julia tomorrow and we aren't quite sure what his reply was! It was hard to not have Julia with us when we went, but Amanda had been talking about it for days. We had hoped that Santa would visit Julia on a day when Amanda could be there too, but just didn't work out:(

Carrie came in at a late hour last night and we didn't get to talk until later this morning and this is my first chance to post so thanks for being so patient!

Carrie and Amanda have Amanda's Christmas program tomorrow evening and we are hoping that Glen will be able to be there in time. They will then go back to Oakland and all staying thru Christmas. We are so lucky that Francesca's brother has offered his house for Christmas eve and Christmas for our family! My neice Laura's Art is going to be out of town until the 5th of January so that is another home in Oakland that is being opened to them. We are so very blessed!

The doctors are very optomistic about Julia and they say that there is no doubt that she is understanding what is being said and is very aware. She has been working very hard on all the therapy that they give her and is really trying to control her legs and arms. That is a lot of tiring hard work.

I am planning on going over tomorrow morning to kiss, cuddle,sing and read! Hopefully I won't drive everyone nuts! Glen's dad and Carole are coming in the afternoon and I will be going to see my amazing mom. We will all be in Oakland for Christmas eve and Christmas with the Sorensen side of the family. We only wish that Dennis and his crew could join us, but since we are infringing on the kindness of others Our group will be large enough!!!
Will give an update after massive kissing and such tomorrow.

Once again I will tell you all that you are so very special and an important part of this recovery process. We love you all and send blessings to you all.
Love you
Grammie Jen

Wednesday, December 19, 2012

Busy day

My dear sweet hardworking angels! You are so faithful and I was so hoping to give you all the info but I only have bits!!
I do know that Julia had a very good day and that the meeting was long and chock full of info to process etc. I also was told that it was good! Yea!! They did try to scope her vocal chords twice but my girl was just too juicy for them to get a look!! We really have to work on the swallowing!!! The poops are going great, fever is down and she is just precious but you already know that!!!! 

Carrie is staying with Glen and Julia either all night or until quite late. It is hard to talk in icu and they don't talk over Julia's head if they can help it! We know she hears all and does understand quite a bit!

I hope to give a full report when I get it tomorrow!

Love you all and know your prayers and thoughts make a huge difference! You Are all the best! Much love and many hugs
Grammie Jen

Tuesday, December 18, 2012

A good day

What a wonderful day for me and I do believe my sweetie Julia! Also a good one for my Carrie!
Julia had no fever and did awesome this am on pt. I got there about 12:30 and Carrie was holding her. We had to get her ready for her cat scan and went down with her and her entourage! She didn't have to be sedated which was great! We didn't get the results yet but probably tomorrow am! I then got to hold, sing, read and kiss a ton! We were both so happy! Mommy got to take a real walk and clear out all cobwebs as it was a beautiful very brisk cold day!!! I put my girl down for ot and it was fabulous! She tried so hard and did well! The family meeting has been scheduled for 8:30 am tomorrow. Both Carrie and Glen and Uncle Wally will be there with the docs. We are very excited! The earliest they may transfer her would be after Christmas. I held her for 3 hours after ot and then finally had to put her down so I could get here to Santa Rosa so Glen could get to Oakland tonight in order to be on time for tomorrow! I will be here with Amanda. I am so thankful for my Terry and Cecelia for helping me to be able to come! It was such a good thing all the way around! 

My angel's smiles so warm my heart! I even think she saw my red blinking Rudolph nose! Not sure what she was able to see but she smiled huge when I held it in front of her eyes! That was very exciting! She has been getting her eyes close to midline more and more- very exciting happenings!

You, my loyal and supportive band of angels, keep us on the right track and help us see each little miracle !! Thank you all and bless and keep you tight in an embrace of pure love.

Grammie Jen

A PS from Francesca: If anyone would like to help out the King family by providing meals, we have set up a Meal Train website for them: 

Monday, December 17, 2012

Grammie's Update

I got to talk to my sweet pea over the phone thanks to Carrie today! Carrrie said she was smiling at what I said and that made me very happy! She had a quiet day and was sung to sleep by Glen's step sister Samantha. That also made me very very happy! My girls are waiting to hear when they will get their family meeting with all the docs. Carrie was able to talk to each of the individual docs but was given some conflicting things and it makes it hard to know what the game plan is. Luckily our little one is doing okay and it is hard because there are so many others in the PICU who aren't! Very very sad and hard!

I am anxious to get over to see my girls soon. I am not sure if I will go tomorrow or Wednesday. We shall see after we sleep on it.

Your strength and prayers are so helping keep us on track and hanging in there. I can't tell you all enough how much you are doing for us and how much it means and helps.
Thank you and much love to each of you
Grammie Jen

Sweet sleeping girl

Aunt Samantha brought Carrie dinner and sang Julia to sleep tonight after reading Christmas books to her. It was a great visit and such a help for Carrie. 

Sunday, December 16, 2012

Working Hard

My little angel is trying so hard to get better! We just have to beat this infection or whatever is causing her to have a 102 fever. Carrie and I were talking about the ventilator and there are many reasons to have her on it, but the longer she is on it the more chances to get a real lung infection that can become a huge deal. It is a bit frustrating and I am praying for her doctors to think all about this and get her better. They have done a good job so far and I know that something wonderful will happen as we begin this third week of advent. I know that we will feel the joy of it all soon! The joy as been coming in bits and pieces and we are so thankful for all that we have had. My girl is moving more and we know that she is hearing us and understanding so much. Carrie is with her tonight and is setting up a family meeting with the docs and staff to get her game plan laid out and answer our questions!
Julia had a nice visit with her friend
Finn, Francesca and Amanda. Her uncle Vince and Heather came by also - another busy day for my sweet pea. Carrie said that she was quite tired and did a lot of sleeping in mommy's arms. I am hoping that Carrie will be allowed to sleep by her bed tonight as Carrie seems to do better being closer to her girl. We are sad that so many other little kiddos are so sick and glad that they are getting great care and hope that the docs will scrape out a little time to answer Carrie's questions tomorrow on why some things have been falling thru the cracks. We are happy that we aren't as serious anymore, but hope to move leaps and bounds forward!

We escaped without the rain during the day today and we shall see what the night brings us! Hope you all had a lovely day and stayed warm and dry! We do so much appreciate and love the strong love and strength that you all send us - you give us the ability to get through each and every day! Angels each and everyone of you and your extended crew.
Love and hugs,
Grammie Jen
Julia with Finn, February 2011

Saturday, December 15, 2012

Lots of company

Julia had a good day with lots of visitors, although she still has a bit of a fever and elevated white count. She was snuggled and kissed by Grammie Jen, and read to by Grandpa Terry. When Grammie asked her to dance she was able to wiggle her hips and move her legs--great progress! She got to visit with Aunt Nancy and Uncle Tom in the afternoon. Glen is there tonight and Carrie will be coming back tomorrow to make the switch with him. She'll be getting a visit from big sis and from her buddy Finn tomorrow, too!

Wishing everyone a good night on this cold and rainy evening,


Friday, December 14, 2012

Grammie's Update: Smiles despite a fever

My heart is broken for all of the people of Newtown CT! We all send prayers and love to all as they feel the horror of this day in their lives! I just want to hug and love my whole family and all my friends tight in a strong embrace of love! Our own struggles seem so inconsequential in the face of this tragedy!

On the bright side of life, my angel had a good day in spite of a fever of 102! Glen

 said she did great with therapy and they had an overall lovely day!

Carrie Amanda and I went on a brisk walk and ride for Amanda before they went off to the nutcracker ballet in SF. They had been looking forward to this for months! Oliver's grandma melody took the two five year olds and their moms! Carrie texted that they had the best seats in the house! A wonderful holiday treat for them all!

We are looking forward to major holding and kissing of our Julia tomorrow! She'd better look out!

Love to each and everyone of you - extra hugs and prayers to you all!
Grammie Jen

Thursday, December 13, 2012

Grammie Update

Angels dear you are amazing and oh so special! My girl had a good day! She was very unhappy when they came to work with her for pt and the therapist said that she thought Julia needed to be held by her mommy. Julia smiled very big and was very happy to be held! I think she is trying to make up for lost time! She stayed cuddled with Mommy until Daddy took over cuddle duty which also made her very happy! Daddy has been working on having her make movements that mean yes and no so she has more control over what is happening.

They have put her back on the ventilator and have it set so she gets a breath ever 12 seconds. They say that having her oxygen drop as much as it was was not letting her brain heal. So it is going to be a little bit slower process. Once she starts swallowing and breathing all the time she will make even more leaps and bounds! I know you all will help to get those two things under control! Overall is is truly amazing and 
making great progress. We and the docs are very impressed with her even with the few wrinkles!
Amanda, Mommy and I went to the library and Amanda Oliver and Finn made gingerbread houses! It was great! We then had a wonderful dinner provided by one of Carrie's angel friends! How special - we capped the evening off with advent candle lighting and story read!

A truly lovely time!
A wish for healing sleep to all!
Love hugs and blessings
Grammie Jen

Wednesday, December 12, 2012

Grammie Update

My dear ones! I am sitting with two of my girls as Julia is sleeping in Carrie's arms. I had the pleasure of much kissing and snuggling with her earlier. She did have a few breathing problems in the afternoon which scared us all. She was fine but it was a bit of a mystery as to what is going on. They are still watching her closely and may move her in a couple of days back to Children's.

The room is very nice and the window is awesome. At one point the sun was shining and it was raining with bits of hail! Crazy!!! Unfortunately there are a lot of very sick kiddos here. The ward is full and they had to call in extra nurses. My girl gets very upset for her fellow ward mates and I think that does initiate some of the breathing problems just by her being so overwhelmed that she can't remember to breathe. Who knows?

Well I will be on my way to Santa Rosa in a few to be able to take Amanda to school in AM and get Glen on his way to trade places with Carrie.

Your prayers and thoughts so envelope and comfort us - blessings to each and everyone of you.
Grammie Jen

Tuesday, December 11, 2012

Good News!

My faithful angels, you are very good indeed! My sweet pea had tons of tests and they show nothing! Her fever is gone and her WBC is down. Carrie held her a bunch and Glen just went home. The docs want to watch her for a day or two and then move her back to children's! We still don't know what is going on with her oxygen saturation and why she has breathing problems but I guess they will be working on that! I got to talk to her by phone and Carrie and it was very fun! I will give an eye witness account tomorrow as I will be seeing her before I go to Santa Rosa to help with Amanda and let them switch places Thursday afternoon. I often wonder who is on first!!!!
I do believe you all had a lot to do with nailing the WBC and fever! Keep up the good work! Back to swallowing work!
You are the best and I am continually amazed by your strength and dedication to my family!
Love hugs and kisses
Grammie Jen

Quick update

Julia is doing ok today. Here is an update from Grammie:
My girl got back from spinal tap and fluid was clear and pressure was 12. All good! Now she will have a cat scan of head with contrast dye to rule out abscess on surgical site. Her fever is down and so is her wbc. Carrie and Glen are hanging in as best they can. Carrie held Julia for a couple of hours this am.

Late night update

Glen just called and they say that the cat scan was not definitive but her ventricles look okay. They will do spinal tap in am and they are culturing everything. Her wbc is now 26,000, so an infection somewhere. Carrie is trying to calm our little agitated sweetie. She will stay in room with her. Glen willl be in waiting room. There are now 3 in the room but they still have the most space in a month so that is great! Will give you uppdate when i get one love and good night to you sleep tight! Grammie Jen

Monday, December 10, 2012

Busy Day--back to PICU

My dear angel warriors! It has been a busy day for our little one. She had a fever of 102 this morning and then no fever at the next reading but her WBC was up a bit. They decided to move her back to the PICU at Oakland Kaiser. She was transferred back this morning and had a full body scan to see what's cooking.

Carrie had Glen's brother Vince come to Santa Rosa and he is staying with Amanda and

Carrie went back to Oakland. The good part for now is that she is on the other side of the building in the PICU room that have windows and as of this afternoon was the only one in the room. We shall see how that goes! Unfortunately until they read the Cat scan Carrie and Glen can't hold her and she is one very unhappy little lady! Hopefully that will be on taken care of soon. My poor little sweet pea! I guess before they had decided to move her she had a great PT session at Childrens. Now they don't even know if there will be a bed when she is ready to go back. Crazy goings on!

I am planning on going somewhere on Wednesday - I had planned to go to a big meeting of all the docs and therapists anyway, but now I will go wherever they need me.

I am waiting to hear what is the word from Glen and Carrie. I will update you all when I hear.
Your prayers and thoughts continue to uplift and hold us ever tight. Thank you so much.
Grammie Jen

Sunday, December 9, 2012

Nona Report

Nona spent most of Saturday with Julia and sends this report:

Yesterday was a very nice day for most of it.  I gave her a total bath with a baby cream massage after.  She is great kicking her feet on comand and likes to swing them back and forth.  When I told her some stories about times we had spent together she smiled!  She did it a few times when I would say things that would normally get a smile out of her (Did you just pee on me Julia??).  She also smiled when I was trying to teach Grandpa how to sing a lullaby to her (he was spending the night) and I made a joke about how bad the singing was!  
Mom, Dad and Amanda showed up at dinner time and Mom and I ate with Julia while Grandpa, Dad and Amanda went downstairs to eat.  The room is not big enough for all of us.  We did open a few presents and Amanda got a book and puppet to read to her sister.  She knew all the words (Five little Monkeys Jumping on the Bed).  Julia clearly enjoyed having her family around her.  However, before we left we had an incident where she stopped breathing and was not able to start up again without help.  We had to call the nurses who were quick in responding and had to "bag her" a few times to restart her breathing.  It was upsetting for all of us, including Amanda who had a lot of questions.  However, within a few minutes Julia was back to her normal color and breathing.  Grandpa and I took Amanda home to Aunt Samantha's house for the night and Carrie joined us some hours later. 
Back at the cousins house on Sunday morning Amanda made a Christmas chain with the help of cousin Connor to decorate Julia's crib with.  She also took a tiny Christmas tree for her sister.  We now are off to see her sister!


Grammie Update

My girl had a nice time sleeping in her mommy's arms today! She slept for a couple of hours and smiled at her mommy and sister a lot. She missed having Francesca come to visit as Francesca had a fever. Bummer! Grandpa Don spent a lot of time playing with her and reading etc. he and Nona were sad to go home, which I know all too well! Her oxygen saturation levels are still all over the place - not sure what is going on. Carrie is going to call me later to give me another update. I will try to let you know what she says. Glen is staying at the hospital again tonight and Carrie took Amanda home. Julia was running a temp this morning so she might have a virus or something. Hopefully it will be fast under control!
We are so thankful that we have you all helping us on this journey. Bless each of you!
I hope you had a wonderful day filled with peace and hope!
Grammie Jen
Julia last Christmas Eve, sampling some of Santa's cookies.

Saturday, December 8, 2012

Grammie's Report

My goodness angels I am such a late poster!!! My angel was with her other grands - Nona and Grandpa Don. Grandpa slept at the hospital and kept an eye on her and then Nona sent him home to sleep and she held and loved my sweet pea. I guess they had a nice day and were waiting when mommy and daddy and Amanda got there in the afternoon. They had had a busy morning getting their Christmas tree and getting the decorating done! They went back to the hospital after a crazy slow drive and spent the evening with Julia. Julia had a lovely time but is still having a few breathing issues and gave them all a real scare by turning blue and desatting, where her oxygen level bombs! A lot disconcerting! Glen is sleeping at the hospital tonight and Carrie went to join Amanda at Glen's step sisters house. I may be going over tomorrow to take Amanda home but we shall see! Each day is an adventure! My girl is doing better in so many ways and we know that we will figure out what is going on. My little angel is probably just very confused and scared as she becomes so much more aware what is happening! The down side to becoming more with it! I know that she is going to have a super day tomorrow and I will have a great report from all! Francesca will be seeing her and that will be wonderful for both Carrie and Julia!
Have a wonderful evening as we move into our second week of advent!
Love hugs and prayers
Grammie Jen

Spending the day with Nona

Julia got to hang out with Grandpa Don and Nona while Amanda had some time with both parents today. Here she is, ready to see mom and dad.

Stroller girl

Friday, December 7, 2012

Grammie Report: Big Smiles

Oh what joy was on my sweet pea's face as she took a stroller walk in the hall today!!! It was such excitement- her face was all smiles and it was so big most times you could see her teeth!!! I will try to post a picture but I can only catch our Mona Lisa smiles - that girl has been tricky with me for two years! OT and PT set her up in a special stroller and took her to a special play room on the floor to work! She was so happy and did such a good job sitting upright! She actually was off oxygen the whole day and did well! She got pretty tired by the second stroller walk and started falling asleep during therapy. She is still in need of a bit of an afternoon snooze like her Grammie!!! I got to sing and do lots of kisses and I left her in the wonderful arms of her Nona! Grandpa Don is staying with her tonight and that enabled me to drive Carrie home to have a night with Glen and Amanda! They will get their Christmas tree tomorrow and do the decorating! Julia will be in the loving arms of Nona and Grandpa Don! Carrie and Glen and Amanda will join them in the afternoon and tell her all about what they did! She loves to hear happy things and hear how they look! She brought her eyes to midline which was so exciting- we know that she'll be seeing things soon!
You all have done a great job on poop and other things -we now need to work on swallowing. I am sure she'll get it, just needs her band of angels to help her!!!

She got more hearts and angels in the mail! What a loved sweet pea! You are so amazing! You have held us so close to your hearts and prayers that we are truly uplifted!
I hope you had a bit of our joy in your day too!
Love you all
Grammie Jen

Grandmas on duty

Sweet photos of Nona telling Julia stories and Grammie getting her toes!

Quick update

Carrie reports: Julia has been weaned of oxygen during day. We went on our first stroller walk around the halls today and she was all smiles.

Thursday, December 6, 2012

Grammie Update

My dear sweet angels, I am sorry that this is so late but I couldn't leave my sweet pea as all I wanted to do was keep holding and kissing her!!! Her bed has so many angels and hearts on it that you know this little one is always in the hearts and prayers of so many!!!!! We are so blessed to have you all in our lives!!!!

Today was wonderful for me as I held my dear one close to my heart!!! My Carrie was very generous with me! I sang kissed and kissed some more! She actually slept some lovely sleep for a couple of hours in my arms! I had to let her go to change her poop, yea poop, filled diaper. She smiled so much her little face probably was tired!!! Not from the poop but it could have been!!!
We were very lucky to have Aunt Nancy and Uncle Tom come visit and also cousin Laura! It was grand! It is always a treat to see them!

Our girl seems to rest a bit better here as there aren't as many alarms which is wonderful! There is a definite learning curve for both us and the nursing staff. I think it will get better with each day!!! I am so proud of both my sweet pea and her mommy- they are terrific!
I am anxious for a bit more kissing and singing tomorrow! Looking forward to a better and stronger day tomorrow!
Thank you for all your love and support - it means the world to us!
May you all have a wonderful day tomorrow!
With much love
Grammie Jen


Grammie finally got to hold her sweet pea today!

Wednesday, December 5, 2012

New Digs

A big day for the King family! Grammie reports: 
My sweet peanut got moved and settled in her new digs! Carrie says she is relaxed and is doing well. There as always a new set of challenges to work on. They are in a nice big room with windows but unfortunately the room is very oddly divided. Julia has 1/3 of the room by the door and can't see the window and Carrie is trying to figure out how to make the one chair work as her bed. As of our last chat it is only able to fit under the sink used by the staff. The staff keeps apologizing for the situation but Julia must be close to the nursing station as she is the most serious patient on the floor. We think overall it will probably work out and Julia will make great strides. She started smiling as soon as she heard her mommy's voice this morning. A wonderful thing! I hope she will be as happy to see me as I will be to see her tomorrow!
Hope you all had a wonderful day and are having a snug lovely evening tonight.
We love you
Grammie Jen
A later night update from speaking to Carrie: Julia has been sleeping very peacefully since she has been in her new room. The overall environment is so much calmer and quieter, and should be more conducive to healing.  Julia will need her rest, because she will be working hard with all of the therapy scheduled for her. They met many people on her team today, and she gets started with therapy tomorrow. She will have Physical, Occupational and Speech therapies, and it sounds like she will often have both morning and afternoon sessions of each. It will be intense, and very exciting as she continues to make progress!
Wishing everyone a wonderful night,

Tuesday, December 4, 2012

On the move

Amazing new news! My little sweet pea is going over to Oakland Children's Hospital tomorrow morning to begin rehab! Glen went over today and saw the room etc. he is excited for her and impressed. She will be in a room with one roommate and it has windows! Yeah! They do lots of play therapy and Carrie and Glen will be taking over some of her care - she will probably get to wear some clothes though she still has the broviac in her femoral and right now it has a bunch hooked up to it. We aren't sure how the feeds will go as it has been a very slow intake but I am sure they are set up and ready for her.

Carrie will go over to Kaiser right after she gets Amanda off to school. Friends will pick up Amanda from school and watch her until Glen can get there in the afternoon. I am sure they both want to help get Julia settled! Please send Glen good healing thoughts as he is not feeling so good this evening. I think the lack of proper sleep is catching up with him as it did with Carrie! Hopefully they will be able to get more rest in the new facility. They unfortunately don't qualify for the Ronald Macdonald type house as they live just under 70 miles away. I am sure it will all work out as my girl gets stronger and better each and every day!

Your prayers and thoughts are so keeping us strong - thank you all for your continued coverage of us - it is so very appreciated and makes us so blessed!
Thank you and love to one and all!

Grammie Jen

Monday, December 3, 2012

A good day

My little angel had a pretty darn good day! Mommy held her this morning and daddy had her this afternoon. One of the relief nurses held her when she was alone while Carrie and Glen were driving to switch places! We were all very happy that he saw her and picked her up since mommy and daddy were not able to be there! Her blood pressure was too high this morning and then too low this afternoon. They are still working on it! I talked to her via speaker phone both this am and pm. I was told she smiled and wiggled her toes - that made me very happy!!!
Amanda was having trouble sleeping without mommy around so since she was exhausted Carrie went home. I hope she will stay for two days and try to get some rest.
My angel is waiting to be held and sung to by Grammie - I just know it! They practiced her holding her head and she did it for several seconds! Yeah my girl! She also has a special seat for her to practice sitting up in and she did
great! I am very proud of her. She also has two poops and they are going to increase the "food" intake volume. That girl is getting stronger!

I hope you all enjoyed this lovely day!

I know that after a healing and peaceful sleep for all my babes will have a terrific day tomorrow!
I love each of you and hope a prayer will also be sent for aunt Bills surgery on his wrist tomorrow! We need him better so Julia won't miss him any more!
Love you all!!!
Grammie Jen
Hanging out at one of Julia's favorite places, the creek near her home.