Wanna see the power of God?

This is Tasia Post Op Day 9

Now isn't that just amazing!!!

XOXO,

Jillian



Day 19 in MN, Post OP Day 8

Today was a great day!  Tasia woke up feeling good. Walked to the bathroom (very slowly) and brushed her teeth. Sat in the chair for about 6 hours talking to people, watching movies and even had a back massage by a massage therapist. She got a package of happy goodies and a new teddy bear from my friend Whitney, flowers from my amazing work, and 3 cards. It was happy and made her smile! Not bad for being in the hospital.

Her pain was controlled throughout the night last night with the new med rates and I fell asleep praying that the pain team and docs would be on board to continue this new rate.  I kept meditating on the scripture - 

 “Be not afraid nor dismayed...for the battle is not yours, but God’s....Ye shall not need to fight .”
(2 Chronicles 20:15, 17)  

I decided that like the mama bear guarding her baby I would firmly stand my ground of protection and then let God give wisdom to their hearts to do the right thing.
  When they all arrived this morning I stood my ground and insisted that this was the minimum amount of pain control she needed and they said that they agreed and would even consider going higher if need be.  Thank you Lord!

 I'm so thankful that we have the Word to comfort us and save us all the anxiety and worry when, if we trust Him, He will make sure it gets taken care of. Trust is such a big thing with God. I wish I would have learned to trust Him so much more before I was forced to.  It hasn't been terribly hard or scary though.  I just decided to give it over to Him because I was confident that physically and emotionally I would collapse if I tried to handle it on my own. I know he loves her more than I do and I know His growl is louder than mine. So He's got it covered just like His word assured me He did.

The night before surgery and the morning of I thought I might just start screaming uncontrollably at turning my baby over to these men and women I hardly know. I had fear and anxiety on how I would handle those two moments in time. But you know how I got through them? I turned to the Word and found comfort and strength. I never screamed but I cried a deep righteous anger cry. I cried that my baby had to go through this. But at the same time I rejoiced that I was able to give her this opportunity for healing and a pain free life.

 I still feel overwhelmed at times but I immediately turn to the Word and get my dose of comfort and strength.  Why do I tell you these intimate details of our journey? Because I know there are others getting ready for surgery or facing some ugly giant that gives them fear and anxiety and I know that here in lies the answer. I've waited patiently on the Lord for almost 13 years now (between Isaac and Tasia) and on March 22, 2012 He answered my cry.

Written on my heart...

Lord, your letter is written on my heart; I pray everyone can read it and recognize it. This “letter” is written not with pen and ink, but with the Spirit of the living God. It is carved not on tablets of stone, but on my heart.

I am confident in You because I trust You.

Day 18 in MN - Day 7 Post OP

Oh where do I begin?  I'm tempted to just skip the day blogging as I'm tired and I don't want to complain.  So instead of just venting I will list the pro's and prayers list.

PRO'S
- Today Tasia got moved from the PICU to the transplant floor. YEAH! Happy!
- We got an excellent nurse on the new floor. Wish we could keep her.
- Tasia new room is huge with a giant flat screen, picture window, dvd player, fridge etc. NICE!
- She's officially on Subq insulin.

PRAYER'S
- Isaac had to go back home today. I would say that goodbye was hard but his taxi got here while TA was getting a big nasty drain. I won't even go into that. Sad :(
- I pray that we will get a better response from the team of doctors to control her pain better. I have run into some real issues in this area. The seem to keep her just below the line of pain control and today it got way out of hand again.  We even had a nasty nurse last night just dosed her heavily with a sedative instead of pain meds. Yeah, real smart lady, maker her sleep through it. GRRRR. I pray for wisdom for all medical staff involved to get her to the perfect med amounts to control the pain and assist in her recovery.

- I pray for patience for myself as I want to let the docs do what they think is best but more than that I pray for a strong sense of favor with the medial staff so that they will listen to what my daughter needs instead of just trying to see how fast they can push her through the recovery and off of pain meds. Healing takes time.

- I pray that they get their act together as the mama bear is growling and as my friend Malkie said, you can hear it all the way in NYC! Pain that is able to be controlled should be controlled. 

- I give thanks for the Resident on the floor today that saw the amount of pain and told me it was unacceptable and upped her pain meds. I pray that the pain team tomorrow will work well with this and follow through. I put a complaint in the parent suggestion site for the hospital that asks "What can we do better?"  I nicely but firmly let them know that pain control was a huge concern.  I understand pain that is so fierce that it cannot be controlled but to chose not to control pain that can be...  Well, don't ask me what I call that...

- I pray that we can get AHEAD of this pain and stay there so that she can enjoy her day tomorrow. She told me tonight, "Mama, this was a very long day."

- I pray that she will get used to the insulin shots quickly (again bad experience with her first shot and it was due to same nasty nurse that just wanted to sedate her to get her to shut up.) Again, GRRRRR. And I pray that her blood sugar will be surprisingly controlled so that they can use less insulin each day and each week.

- I pray that the rest of our stay will be beautiful with leap and bounds of progress. I pray that we can be a great example to other families in this hospital  to show that you can go through the fire and still have your joy and peace.

- I pray for peaceful sleep - it's needed for both of us.


Thank you all for everything. You're prayers are absolutely beautiful.  I'm gonna wrap this post up cuz I need to get in the Word to assist the success of this night.

XOXOXO,
Jillian

Day 17 in MN - Day 6 Post Op

Today was much better than yesterday! Since Tasia was doing so good they had the idea to "fast track" her on getting her down on pain meds. Not such a good idea. We had a terrible day yesterday and a pain filled night until I finally had enough and asked that one of the residents come fix the pain med issue until we could see the pain team today.  It's so hard because on one hand you have to let them, as doctors, try what they think is best but on the other hand you can't let them do something your child is not ready for. So we went back to the PCA and she is on a continuous drip of pain meds plus all the bumbs of pain meds she could need.  Today was happy!

We also found out that she is now approved to start subQ insulin and get off the iv insulin which means TRANSPLANT FLOOR TOMORROW! Holla!  She will now get to have her blood sugar tested every 4 hours instead of every hour. Her purple bruised fingers thank the docs for this one. And at this point she only needs insuline 2x a day and we will adjust from their. Dr B is very confident that her little islet cells are gonna rock it! It will be great to move to this new floor as it will be Tasia and my home for the next month or so and at least between that and RMDH we can be settled. We are praying for an "adopted room" - I'll tell you all about that in another post though ;)

She had a liver ultrasound today as well and they said that her liver looked perfect and that it wasn't having any complications since the transplant. Thank you Father!

Tonight we gave her a little sponge bath, changed her clothes and then she decided she wanted to see the gift shop. So with lot's of "bumps" (pain meds) and little breaks she walked all the way to the lobby.  Let me just say the everyone was amazed by this. Daddy even bought her a new stuffed puppy dog for all the hard work.  I told her at one point she could just stop at the end of the hallway and we could try for the gift shop tomorrow but she said, "I don't ever give up!"  And that my friends is so true.  She doesn't give up!  Isaac gave her a ride in the wheel chair all the way back up stairs because there was no way her little legs could carry her any farther.

Tomorrow we get moved to the floor and she couldn't be more excited. She still has a long road of recovery but her road so far has been one to amaze us all and we give that credit to God.

She keeps saying, "I just want to hug you Mama".  This was our first official hug as she's hurt too much to bend towards me until today. VERY SPECIAL MOMENT!

-Prayer Requests-

That her body adjusts to subQ insulin easily and that we can start weening her down to less and less and within 6 months or less to none.

That the pain continues to be controlled.

That her GJ tube stops hurting - it's terribly sensitive to every tiny touch and bothers her a ton.

That she has peaceful sleep (and Mom and Dad too)

That her body and muscles grow stronger to help her move with ease.

That everything inside of her - cells, organs, blood, tissues etc be normal with no complications and heal supernaturally fast by the power of God.

Day 16 in MN - Day 5 Post Op

Well hello there... Today was rough. I can't lie. Tasia's belly was just plain sore today and it made it hard to move. But there are just gonna be tough days sometimes. She got almost all the bandages removed and that in itself was very tough. It hurts to have all that pulled off and then she also saw just exactly what her incision looks like. It's about 8 inches long with lots of staples. That's tough for a kid to see on themselves! She said, "It looks like I've been cut in half". Sad. I told her that although it's big it has given her a life without pancreatitis and that it will heal to a simple skinny long line and won't look bad at all. I was nervous for her to see it but she handled it like the little champ she is. They make them that big on children so they can do an excellent job and see very well.

She also got another set of tubes removed (she had about 7 different ones after surgery). Her fingers have been pricked so many times for blood sugar that they are bruised purple. Glad that the testing supplies for after the hospital are more gentle.

 Physical therapy was less than fun. It made for a rough day for her and it made for a long day for Isaac and I.  So you can see that with all this going on - it was just plain rough.

 But on a very happy note she's looking great! You can tell just by her coloring that she is healing. And her blood sugar was well in control today and her fever broke. Yay! Doctor C was thrilled when he saw her. Yesterday he said she was ahead of the curve in regards to recover and today he said she is way ahead of the curve!  He said she is doing absolutely awesome.  Love hearing those things.  I'm always excited to see God wow doctors.  I kinda get a kick out of watching mouths drop open.  He also said not to be discouraged because it's very very normal to have days like this and in comparison to what could be this is very wonderful. Hot dog! I'll take that!

As of tonight she's feeling a little bit better and she's all tucked in bed. I am not going to be discouraged by a rough day, there may be many more of those... but I will tell her and myself that we are one more day closer towards full recovery and that is worth the fight.

-Prayer Requests-

For long lasting pain control and that her new pain regimen will work better.

That her blood sugar will stay regulated and her islet cells will flourish in her liver.

That her food will continue to do nothing but bless her body and nausea will be and stay controlled.

For wisdom for her doctors.

For continued top notch nursing staff that are well trained, competent and compassionate.

That her body will continue to heal in every area quickly and correctly.

That her muscles will grow stronger everyday so that she can move easier and walk stronger.

For peaceful sleep.

Day 15

Is it really already day 15? Wow... we've already been in MN two weeks. That means I haven't seen my boys for two weeks. It's hard on the whole family. If you see my boys in town or at church, please give them a squeeze for me from their Mama. I love you Hunter and Xander! Thank you both for being such strong big brothers for Tasia. You've always protected and taken care of her and you continue to do so by being strong and patient while we are apart. I love you with all of my heart!

________________________________________

Last night was rough as Tasia's pain creeped up and got ahead of the pain meds. They also had to do "bowel stuff" as her gut is still asleep. Talk about rough on a 9 year old :(  We also changed her pain meds from fentanyl to dilaudid and that helped a bunch. She got a lot of sleep (which means we did too and that was not the case the night before) and woke up in NO pain!  This lasted for a couple hours before she had stabbing pains that were heart wrenching for parents to watch. But I've gotten to a point with her that we have found things to do to help till the intense pain passes. Daddy, soothes her with a cool wash cloth, while I pray and breath with her throught it.  They think a lot of the pain issues that are happening are a result of the gut being asleep. Walking will help so she is going to do more physical therapy today and get up and around some more.  They did x-rays to double check all is well though.  The pain has to be controlled before leaving the PICU.

Her blood sugars have also been all over the place the last two days - this is probably due to upping her tube feedings. We've gotten to see hypoglycemia now - don't like that one bit!  We are praying that this all levels out today. Her blood sugars have to be level before leaving the PICU.

She has taken a few sips of apple juice and water - big step! She's aloud to advance but nausea has been an issue since yesterday so she doesn't want to quite yet.  Later today I'm sure we'll conquer the cracker.

Honstly they feel she is doing great! You just have to understand that this is one of the most painful surgeries you can have and great is still very, very hard. Her incision is about 8 inches long! Not to mention all they did inside!  Everyday has it's own challenge as you can see from  my prayer requests.

-Today's Prayer Requests-

Continued Pain Relief for Tasia

For nausea relief

That her gut "wakes up" and starts working

That her blood sugar get's controlled

That the infection in the islet cells goes away and fever leaves

For peaceful sleep and wake times.

This is a song that we have playing in  her room.

Day 14- Update and Prayer Requests

Well hello there,

Tasia has definitely taken a few steps forward. I'm sorry that it's been too crazy around here to stop and write. I see not only by your loving responses on FB but also by results that you are receiving my prayer requests via my quick twitter updates.  Let me just give you a quick run down of yesterday and today.

Yesterday Dr. C said that he didn't like the fact that she was sleeping so much. He said it's wonderful that we are controlling pain but she's gonna have to endure some of the pain to get her body up and moving so that she can move forward. To stay in bed would make her hurt more and be a vicious cycle. So the plan yesterday was to get her to a sitting position on the side of the bed.  Tasia went ahead and took it a step further and pushed her self to be able to stand. She is a trooper!  Unfortunetly lots of movement and the fact that they lowered her pain meds to lower than what she even gets on a normal hospitalization for pancreatitis meant that the pain got ahead of her.  I sent our a message for prayer and within an hour or two her pain was under control.  They also said her hemaglobin was dropping and transfussion was around the corner if it continued to drop. It did continue to drop but we just tackled that in prayer and today it went up .2 so progress means no transfussions!!  Last night her blood sugar started climb higher and higher and they were afraid it was going to compromise her islet cells from transplant.  Again, I sent out word for prayer and over night they came back to normal and are now under control.

Today Dr C came in and said he was very happy with her progress but she need to get out of bed and walk a few steps and sit in a chair.  In my mind I was thinking, "Oh my that a lot to ask of her", but within moment of him leaving she was walking down the hallway. It very much hurt her but she was determine.

She even gave us lots of smiles through it all. He even gave her the go ahead to eat a little bit. She gave him a "yuck" face when he said popsicles so he let her chose and she will be trying crackers and juice today.

Currently, she is hurting from all the moving and working so hard. The pain is pretty bad and she's got a great nurse that is helping out with that.

 - PRAYER REQUESTS -

Please pray with me that we get her pain under control again quickly and that the doctors are able to figure out a good plan to avoid letting the pain get ahead of her again.

And that also her food is a blessing to her body and doesn't cause uneccesary pain or nausea.

Please pray that the fever she has been having breaks and stays away.

Thank you so much for being our prayer warriors - please know that your prayers are being heard and answered and mean so very much to our family!

And as always, thanks be unto God who always causes us to triumph in Christ Jesus!

XOXO,

Jillian 

Day 12 in MN, Day 2 in PICU

God is able to do exceedingly abundantly above all that we ask or think according to the power that works in us. (Eph 3:20)

 God has done exceedingly abundantly more than our big prayer list for surgery yesterday and I am expectant and full or hope, trust and faith that he will continue to work in Tasia as we begin the journey of recovery. We are confident of this very thing, that He who began a good work in her will complete it (Phil 1:6)

Today we pray for peace, healing and pain control.

Thank you all for your continued prayer - they are not definitely working and power has been released in MN!!

Thanks be into God who ALWAYS causes us to triumph through Christ Jesus.


UPDATE: Tasia is doing really well. They are bringing her out of sedation this morning and plannning to pull the vent by afternoon when she is breathing on her own. Dr. Chinnakolta said that she is doing very, very, very good and that since she didn't come into this on a bunch of narcotics that he thinks she may fast track getting pain under control.  Praying for a beautifully successful day.

XOXO,
Jillian


PS. I don't want to post pics at this stage in the game. We'll wait till she's out of PICU.

Today She Get's Life Again...

Almost 10 years ago we gave Tasia life... today we get to give her life again.

Surgery is scheduled from 8am-8pm central time today. We send out heartfelt thanks and praise to our Father for His healing touch. We believe this will go remarkably well and that all glory will go to God. For updates, please watch the twitter bar at the top of this page or if you are a facebook friend you can follow there as well.  I will either update myself or give my password to someone to update for me.  I will update this blog like normal as soon as I am at a place where I feel comfortable to do again.  And I will say again...
Thanks be unto God who ALWAYS causes us to triumph in Christ Jesus!

What We are Praying and Believing God For

What we are praying and believing God for

-          That the peace that passes all understanding will be over Tasia and our family tomorrow and throughout the recovery process.

-          That the surgery will go remarkably well.

-          That the hands of the surgeon will be guided by Jesus himself.

-          That the surgical team will be strong, extra alert and focused with wisdom to know exactly what and what not to do. That they will do everything precise and with excellence. That they will have supernatural revelation of what to do.

-          The blood of Jesus is applied over every doctor and anyone who has anything to do with Tasia while in the hospital.

-          The blood of Jesus is applied over Tasia, every cell in her body is covered and protected by the blood of Jesus Christ and NOTHING that destroys can enter or cross that blood line.

-          That Tasia’s body will respond during surgery under the direction and inspiration of the Lord – according to Proverbs 18:14 – the strong spirit of a man sustains him in bodily pain or trouble. Tasia’s spirit will sustain her in and thru the surgery and recovery.

-          What needs to be done will be done, no more and no less.

-          Her body will remain strong, her heart and breathing will remain totally strong and normal.

-          That there will be no complications during or after surgery.

-          That the pancreas and all organs and tissue that need to be removed will come out with ease.

-          That she will have a remarkable HIGH islet cell count for transplant.

-          That her liver welcomes the new islet cells and they flourish in their new home so that she can come off of insulin.

-          That Tasia will not be a diabetic.

-          That everything in her little body would heal supernaturally fast.

-          That every cell, organ, tissue, blood, bone etc be whole and healthy in the name of Jesus.

-          That Tasia would have less pain than normal and that her pain will be easily controlled.

-          That her family will have supernatural emotional strength and endurance during the surgery and recovery.

-          That she will have sweet, sweet sleep at night.

-          That the nausea will be controlled and leave quickly.

-       That she is able to resume to regular eating in a good amount of time and that the food will be nothing but a blessing to her little body.

As always....Thanks Be Unto God Who Always Causes Us To Triumph in Christ Jesus!                                       

-Please watch the top Twitter Status Bar at the top of my blog for updates-
Many of you have asked for an address:
If you are wanting to send flowers or balloons - you may have to wait 1 week until she is out of ICU. Cards and letters are welcome even in ICU.

Tasia Gallegos

C/O University of Minnesota
Amplatz Children's Hospital
2450 Riverside Ave.
Minneapolis, MN 55454
612-365-1000

Day 9 - Part two

Sigh... Today was a little rough. Tasia had to go back to clinic today to get another blood draw, chest x-ray and also have her final meeting with the surgeon.  The blood draw was extra traumatic this time and that is never fun.  The girl has had to many pokes in her life. The meeting with the surgeon was not the fun kind. He did his doctorly duty to paint the worst case scenerio of recovery so that we wouldn't put too much expectation on her for recovery.  I sat there thinking that he is going to be so surprised when he see's how remarkable her recovery is.  She has ALWAYS amazed the medical world with her recoveries. Then we had to come straight home (hotel) and start her internal cleansing drink.  64 oz of gatorde (3 big bottles)  with an entire 8.3 bottle of laxative plus extra laxatives in pill form. We prayed before she even started because we knew this could be rough.  She had so much pain and she even said it hurt her pancreas.  It broke our hearts as she cried and cried and begged for it to stop. She even refused to continue to drink the drink and cried that she wanted to go home. Talk about hard...  But then, she dug her heels in and just surprised us and chugged it down.  And she may have had some last day before surgery shopping incentive given by Nana.  You wouldn't believe what a girl will do to shop. She's a girl after my own heart - hee hee. 

Tomorrow is the day before surgery and she has no appointments except with a shower and a bottle of anticeptic soap. We thought it would be fun to go out to the Mall of America and walk around and go to their acquarium.  Some happy before the tough stuff starts. 
----------------------------------------------------------------------------------------------------------------------

I just paused in typing this blog post because she crawled up in my lap and wanted to be held.  She's almost 10 years old but she's still my baby and needs her mama.  During these last few days I have taken notice and drank in every moment I possibly could. I just kissed her soft cheeks and remembered kissing those same cheeks when she was just a little baby. I watch her rush down the hotel hallway to beat me to our hotel door and just smile and she runs and squeals because I know there will be a lack of running and squealing for a little while.  But I am ready to put those moment on hold for a brief time so that we can have a lifetime of those moments.  She is such an amazing child and I am so very honored to be her mama. 

Everyday I tell her that we are on an adventure and she is the hero of the story.  I tell her that she is on her way to a very happy land where pain is not aloud. We talk about all the lovely people that the hero meets in her adventure and how they all love her and care for her along the way (those people are you, dear readers), I tell her that all hero's have to go through the woods sometimes and those woods can feel dark and sometimes scary. I explain that sometimes a hero needs to cling to her fairy god mother (which is me) and she will lead you out of the woods and direct you to the happy land of no pain again and better than any wizard that Dorthy may have had, she has Jesus and He is more powerful that any wizard.  We will make it through this adventure and Tasia is just the right hero for the story.

XOXO,

Jillian

Day 9 - Part one

I'm not sure how I missed posting on day 8 and slowly but surely the days are starting to run together. I've gotten a bunch of work done via laptop yesterday and today and even had phone conferences as well. It seems weird to be off of work (a job I love) for awhile but this is my calling right now. I miss work and miss my friends and most of all I miss my family. But I know work and the people dear to my heart will always be there.

Love you all and thank you for keeping us lifted up in prayer. And thank to to those who are honoring Tasia by sending donations and gifts. You are all so, so dear to my heart.

((HUGS))
Jillian

PS. We picked up Nana at the airport last night!! Thankful and happy that Nana is here to be with us during this time <3

Day 7 - part two

Tonight I met another new friend Rachel. She is in med school here at the U of M and had the same surgery as Isaac and Tasia back in August. Rachel has NO PAIN and feels totally normal. Eeeeee! That makes me so happy. Rachel is an amazing woman and the medical industry is very lucky to have her. She's the kind of doctor I would want. She's smart and beautiful and loves God with all her heart. She's also been through a serious chronic illness so she knows what it's like to suffer. Could there be a more perfect doctor? No way! Go Rachel!

Rachel and I found each other through a pancreas support group and just began messaging each other on FB this weekend. She saw that I was wanting to go to church tonight and immediately offered to come pick us girls up and take us. We hit it off amazingly just like Kristen and I did. God is so good to bring me friends so far from home. I didn't get a picture with Rachel but I will sometime while we are in MN.

Tonight was so powerful at church. Awesome word came forth from our family friends Mark and Trina Hankins. They laid hands on Tasia and I both and prayed for a long time for us. The power of God was so strong in that room that it was THICK and tangible. I feel even stronger than I did before. I knew that I needed to be in church tonight for a reason. Having Mark an Trina were like a little bit of home and it was wonderful to see them.

On a totally different note- I miss my boys more than words can convey. It's not right for a family to be apart. Stay strong boys. I love you three!

I have lots more to say but I can hardly keep my eyes open. I think I will just rest and meditate on the Word and the power of tonight.

Once again - Thanks be unto God who ALWAYS cause us to triumph through Christ Jesus!

XOXO,
Jillian

Day 7 - God is in the ghetto

I told you all that you would get the honest to goodness truth and reality of what we are going through. So I showed you some of the pleasantries yesterday of a friend and the zoo... Below is a picture of what our hotel is around the corner from... The locals call it "Ghetto In The Sky." Um wow. I don't even want to think about what goes on in a place like that. Although our hotel has the nicest staff and I'm feeling safe inside the walls of this place. Our favorite shuttle driver Michael has arranged for transportation to a church where our long time family friends are preaching. It will be so nice to see Mark and Trina!

Michael and the manager also set up a system for us to do our laundry here in the hotel - this is great cuz we did it in the bathtub last night and our whole room has laundry strung around drying everywhere. I'm choosing to look on the happy side... At least Tasia is learning how to be resourceful! Also the manager brought us a fridge - happy! Michael said when he's the driver on duty he'd be happy to drive me to Target too! Thank you Lord! All my prayers are getting answered. Now we just need to get into RMH and we will be even more happy, as staying in a hotel is way too expensive - even one around the corner from the ghetto. Lol! I know God is into details so He will make a way.

Anyways - even though we are around the corner from the ghetto and it's not the ideal situation... God is most definitely here in the midst of it all.

XOXO,
Jillian

Day 6 - part two

Today we met up with my friend Kristen who I have gotten to know via a web pancreas support group. Kristen in only about 10 minutes away! She came and picked Tasia and I up and took us to the Zoo, lunch and Target to pick up anything we might need. Kristen is such a blessing! She even brought me some clothes knowing that I came her with so little - as we were not expecting this to happen so quickly. God definitely is orchestrating all of this and for that I am so very grateful! Please pray for Kristen as well as she is having this same surgery in May!

Here's some of our day in pictures...
Tasia didn't feel like being photographed today but I swear she was there- lol!

Day 6 - part one

We have two beds in our hotel room. Tasia is sleeping with me because she needs to feel close to me right now. We tried to go to bed around 10 as we were so exhausted but she began pouring her heart out to me about what it's like to be her. I can't even type this without crying...

She told me that a lot of the time when we are all having fun as a family she gets really bad pain but just makes her self keep smiling so that nobody knows she's hurting and then everyone keeps smiling and laughing.

Tears!!! She is way stronger than she should need to be. It makes me wonder how many times she was hurting and I never knew. I hate that! I hate this stupid disease for robbing her of precious childhood moments. If we didn't need the organ for the transplant part of the surgery I would want to stomp on it after it was out of her. I feel as of she has had an enemy living inside of her. I am happy that Isaac and I are the ones to free her of this. It wasn't the most trusted GI we've had for 8 years it was her parents deciding to take control of this ourselves and make this whole nightmare stop! I don't need a physician to hold my hand and point us to the experts... I found them myself and the Great Physician led me here for such a time as this!

We also talked about how for the rest of her life she would have to take enzymes every time she eats and for the first 6 months give herself insulin shots when she eats. I told her that she didn't have to explain to other kids at school what she was taking that she could just say they were "vitamins". She doesn't need to explain the story to every child that asks (cuz you know they all will.) But she said, "No Mama, I want to tell them the reasons because I want them to know the REAL me".

Again, tears.... How did I get so lucky to have such an amazing little girl? She's proud of what she is beating. And she should be! I've said it before and I will continue all my life.... Tasia is my hero!

And I will close with this last thing for this morning... I can truly feel the presence of God wrapping his arms around me and Tasia right now. Your prayers are most definitely working! Don't think that your prayer is insignificant because they are being answered and we are stronger because of them. Each morning since we have arrived I wake up with an intense stress related belly ache and anxiety. This morning I just began praying and asking God to give me physical and emotional strength to endure till we pass through the fire and I began saying over and over - "they that wait upon the Lord shall renew their strength, they will mount up with wings like eagles." I probably repeated that 30 times. And within moments all physical pain completely stopped and a peace filled the room. Thank you Jesus for caring for us! Thank you for your immediate help this morning and thank you for never leaving us... We couldn't do it without You.

-Jillian

Day 5

Today was a day where we did our best to keep our minds off the fact that we are in fact, here alone. I hated seeing Isaac go but we have 3 children and the boys need a parent to be there with them too. And since this was very much a surprise to us that this was being done so soon we took a look at our suitcase of 5 days worth of dirty clothes and realized we not only need a laundry mat (or even better the RMD House) but we need some practicable things like some jammie's and sweats for Tasia after surgery, pajamas for me (believe it or not they expect you to me modest as the hospital), toiletries and undergarments. I'm happy that I brought tennis shoes and flip flops cuz the stilettos will be retired now for a good long time. Anyways, would you believe that the largest mall in America doesn't have a Target?! I was in shock! So I still need to find a few things by that'll happen when it happens. For now I am at least prepared for a week in the PICU.
In other news Tasia had a severe bought of pain riding the Light rail today and it just sealed the deal in my mind that we are doing the right thing.

We are absolutely exhausted because we walked miles and miles today. I'm pretty good at getting lost in general and at THAT mall, well let's just say we made a lot of circles.

Tomorrow we are meeting my friend Kristen who is having this same surgery in May. We've never actually met face to face but tomorrow is the day. We are gonna take Ta' and her little boy to the zoo. I'm so thankful to find a friend close by! Kristen is wonderful and she knows what it's like to deal with this sickness.

Well I think I'll close for now and get some sleep. Thank you all for your continued prayers and support. You bless my heart!

XOXO,
Jillian

So here we are...

and there he goes...

I don't think I've cried this many tears in my life. The idea of not seeing my boys for months is breaking my heart. But I'm here for Tasia so that we can enjoy a happy life with our boys. I'm not gonna lie, this is the hardest thing I've ever done in my life... and we get to do it twice. I am thankful, honestly, that they will be close together so we can look back on this year as the end of our very difficult struggle with this. To say goodbye to my boys for a few months is to say hello to a life of health for my daughter and husband. As hard as it is for the boys, I know how much they love Tasia and how this is their way of being strong and protecting her. Please pray for them as well- its hard on everyone! I am sitting here in the Holiday Inn waiting and praying for an opening in the Ronald McDonald House. We are 13th on the list. We REALLY need to get in there because I cannot just move in to this hotel for awhile... We just weren't prepared for that. So please pray this opens soon.

God is good and I'm am being forced to trust him in all areas right now. I'm sure this is not a bad thing. Lil' miss independent is gonna have to be dependent on the Father for a lot in the next few weeks and months.

I already ache for my husband and boys. They spoil us girls and make us feel like a million dollars. I have fallen asleep in my husbands lap every night for more than a year... Tonight I will fall asleep on my pillow. Most likely a tear soaked one...

Day 4 - Surprise!

Please see THIS POST to find out what has taken place today.  My husband said it all so well and I need to digest it all right now.  Plus my husband is leaving tomorrow morning I will very likely not see him again till JUNE. I need to be with my man.  More updates soon. I love you all and appreciate your prayers!

XOXO,

Jillian

Day 3

Today was absolutely exhausting. I honestly feel as if I could collapse.  What a productive day though!  This day was totally about Tasia and her surgery.  First we met with a pediatric GI. Wow. Dr. Shwartzenburg is amazing. She is so knowledgeable! She gave us more info and helped us more in an hour than we've gotten in 8 years.  She LISTENED - that was amazing.  She was more knowledgeable that me! I know that sounds cocky of me to say but you'd be shocked at how many docs know very little about this rare disease.  And then mention this very large surgery and then you really get some shocked looks.

We met Dr. C, Tasia's surgeon, and he was great!  He was very, very knowledgeable, confident and even funny.  We really liked him.  This appointment was basically a different version of the same consult we had for Isaac. Not really any new news but his thoughts and reasons on why this is needed for Tasia and why she is most definitely a candidate for this surgery.

We met with a nutritionist and one of our favorites, Dr. Bellin, the endocrinologist.  We found out that Tasia's blood sugar and C Peptide test looked so far so good!  She explained diabetes (which Tasia has a good chance of not getting) and the transplant side of the surgery. We were surprised to find out that she and Isaac can eat ANYTHING they want and just have to take the right dosage of insulin to carbs!  We had been under the impression that diabetes would be so much harder.  Holla! I explained that I was worried about Tasia's very strong dislike for needles and she even brought in diabetic testing supplies and let me stick myself in my belly to see that the needles don't even hurt.  Isaac - did it too and was very surprised to find that it didn't hurt. We both almost stuck ourselves 2x by accident because it was such an easy painless stick that we didn't know if the needle had gone in yet.  She gave us a blood sugar monitor and I did that too.  That part wasn't fun but wasn't too bad either. Isaac didn't do the finger prick. Wimp. Ha ha. He's gonna say, "I've done this and I already know how it feels." But I don't buy it. Wimp. Hee hee. (I'm kidding of course.)

Tasia did start having episode during her appointments. Poor baby - they got her some very strong pain meds and she is currently feeling pretty good. We are hoping it runs it course and she can avoid the hospital.

This update sounds incredibly dull but it's because I'm so very tired. I can hardly sit here and keep my eyes open.  I don't like writing while I feel so wiped out but I know there's a bunch of you wanting to know what we found out.

Basically it all boils down to this....

Tasia does in fact need her pancreas out. She needs it out sooner than later.  All that is happening is continued damage to her pancreas. Every attack means less islet cells.  The sooner we do it, the more likely she is to be insuline free. Cancer is not a worry at this point for her... those chances start when she gets closer to adulthood. But 18 years old will be here before we know it.  The amount of pain she suffers on a daily basis is another reason to get it out.

The facts are this - due to having the PRSS1 gene she is almost guaranteed to have cancer and become diabetic within her lifetime. This surgery virtually eliminates the cancer and the younger she does the surgery the better chance she has of dodging diabetes. Doesn't that sound like good reasons? Not to mention the fact that she can have a childhood free of pain! That to me is priceless!  This surgery goes sooo much better for people who are not chronically on narcotics and she is not there at this point. We don't want her to get to that point either.  She is at a very good place in her life for this surgery right now.

We also have been concerned for years about her having babies someday and this gene passing on to our future grandchildren.  Well Dr S said they are developing a gene therapy that can be given to newborn - age 1 children to completely PREVENT this disease!!! Tears!!! This was such good news that I had to call my friend Whitney and personally tell her as this is so dear to our hearts.

There is currently nothing going on in medicine that would remove pain, save islets and prevent cancer. This is our only option other than leaving it all up to chance. We don't want to gamble with our child and her quality of life.

So now the question that is heavily on our hearts is - WHEN?  Obviously we cannot do two very, very major surgeries at one time. I am only one person and need to be with both during this tough time.  We also don't want Tasia to miss out on a ton of school and have to repeat a grade. We both have full time jobs and we very much need these jobs.  In and of ourselves we don't know when to do this. We need some serious prayer to figure this one out. I know the HE knows what is right and we need to fall in line with His plan.

I know there is a TON more that I am forgetting to tell you but I am so tired and at least I got out the most important part.  All doctors we have seen all agree that surgery is a must for Tasia. We feel in our hearts this is the right thing.

Will you please agree with us that we will know the right time to schedule this surgery for both her and Isaac?

I will update more tomorrow as it comes back to my memory.

XOXOX,
Jillian

PS - Soon, I have a message to all families suffering with this disease - the genetic kind specifically.  I am willing to be completely honest and say the tough stuff that we all need to stare in the face.  David beat Goliath because he knew exactly what he was facing.  You need to truly know this beast to beat it.  I don't know if I will write this as a blog or send this out as an email but I feel that we need to know this stuff to protect ALL of our children.

Day 2

Wow. I don't even know where to begin....

When I woke up this morning I had, for the second morning, an overwhelming sense of dread.  I picked up the phone and texted a couple people who have been there for me through all of this and asked them for prayer.  I told them of how I needed some peace over this situation as I didn't feel any at this point.

I felt lost in a different world called Minnesota.  Don't get me wrong, this is a great city and everyone is really nice but there was not a peace and I need peace.  After asking for prayer I sat down on the side of the tub and prayed myself. I told God that I had to KNOW this was the right thing and it all had to come together for me to feel right about any of this.  I prayed and then just expected Him to come through for me and then went about my morning.  We traveled to the other side of the river to the adult side of the hospital and started the whole Mixed Meal blood tests / C Peptide tests.  The whole situation was a mess. They were busy and we were dealing with lots and lots of different lab people and nobody seem to know what was going on.  A three hour test turned to a four hour test and we were almost ready to miss our appointment with Isaac's surgeon.  I began thinking again of how I needed this to come together when from around the corner came our transplant coordinator Louise. Sweet Louise! As she moved around, she made everything fall into line. Just her presence made me feel better.  She told us of how much we were going to like Isaac's doc and Tasia's too!  She said that Tasia's doctor is SUCH a hard worker that he made the news a while back for staying at the hospital for 4 days straight, refusing to leave his patient that was in need of a new liver. He didn't leave until the boy had his liver! Thank you Lord - that's the kind of man I want working on my daughter!!!

And then the BIG MOMENT came.  Isaac's surgeon appointment.  We sat in the exam room and anxiety washed over me as I began to panic about all the little things there are to panic about.  I plead with God to make this all work out. That all questions would be answered. That we would just "know" if this was right. I sent out a message to ask for prayer that this appointment would accomplish what it was meant to accomplish. I got a message from my friend Whitney - and well lets just say that it blessed me so much and gave me more strenght to face this giant head on.  And then walked in Dr. Beilman - he had a huge smile across his face. He was HAPPY. He was CONFIDENT. A peace that passes all understanding washed across that exam room and my heart was calm.  He and Louise gave us GREAT NEWS - Isaac doesn't show any signs of diabetes... not even pre-diabetic!!  They said his islet cells looked great!  What amazing news!!!  He told us that there was about a 50% chance Isaac would need insulin and if he did it would probably only be 1x a day. That's amazing seeing they usually say that two thirds of people are in fact diabetic after this surgery! He said the fact that he is healthy and strong would absolutely be in his favor. He said that he most definitely could foresee him being able to continue in law enforcement and that he expected a full recovery.  He was HONEST too.  He didn't sugar coat anything. He told us what would lay ahead if he didn't have the surgery.  He said the things that are hard to hear.  He told us the intense complications.  But we still felt confident with him and full of peace.  He was HAPPY! I love HAPPY!

So thank you... thank you to my prayer warriors!  Thank you to my best friends. Thank you to our families. Thank you for the calls, texts, messages etc. We feel so loved and strong with you all behind us.  I may not be able to return calls and messages as quickly as I would like but please know that they make a huge difference in this whole process.  We are blessed beyond measure.

Next Step?

1. A CT Scan on Thursday to double check the portal vein where they well transplant the islet cells. Gotta make sure it's healthy and not clogged.  
2. A letter getting sent to our insurance to see how much they will cover of the islet part of the surgery.  This can easily cost $650,000. The social worker said to be prepared.... um okay. God you got that covered, alright?
3. It looks as though the mid-end of May will be the surgery.  Exact date will probably be set early next week.

And on top of all of that... Isaac and I found the place where I will stay while he's in the hospital and where he will recover. It's literally steps away from the hospital and safe and clean.  It's all coming together!

Tomorrow - Tasia's turn!

News Story

This news story talks about the Islet transplant side if things.

http://minnesota.cbslocal.com/2011/08/10/u-procedure-helps-kid-with-rare-condition-avoid-diabetes/

Here's a story of hope! Dr Bellin and Dr Chinnakolta are Tasias doctors!!! We meet with these two tomorrow. This makes me feel very confident and excited for the future. It's a LOT bigger than the news makes it sound but still it's exciting! 

Day 1

Day one was pretty busy. I was operating off about 3.5 hours sleep and Isaac off of 1 hour. Talk about tired! We started off a little rough when Tasia realized that she was gonna be getting blood draws today. It all of the sudden became very clear (even though she knew) that this was a medical trip and not a vacation. The staff was great and very understanding and got her smiling in no time. Well they got her smiling after they brought a J-Tip and numbed the IV site. After a 2.5 hours of C Peptide testing we met with a very nice lady who took us on a tour of the new children's hospital and showed us where she'd be before surgery, PICU after and then the children's floor where she'd recover. I'm telling you what, the PICU was a constant battle of blinking back the tears for me. Seeing the equipment, rooms, beds, staff and all those kids in ICU was heart wrenching. We saw kids who could hardly walk, a baby fighting cancer that shared a room with Tasia during her testing. I heard moms discussing renal failure and babies screaming in next door rooms. This is not an easy place to be. But in the midst of all of that - this place us gorgeous! Take a look at a few of Isaacs pics and you will see. The kids ward is AMAZING! 52' flat screens (some rooms have 3 flats screens!) Private sleeping areas, color changing lights, web cams, video games, digital messages kids can have displayed outside their rooms electronically to say whatever they want, refrigerators, micros, fax machines and office space for parents who need to keep working, art rooms, reading space ship area in the library, etc, etc, etc! And the staff are so sweet! If you have to be at a hospital with your child, this is the place!

We also met with the social worker so they could give us all the costs of this and she could ask all her questions.

We ended the night with dinner at the Mall Of America and a soak in the hot tub. Im off to bed now as Isaac has a full day of appointments tomorrow and I am wiped out!

Thanks for all your prayers! We could really use them tomorrow and Thursday as these are major decision days.

Hugs to you all!
Jillian

 

We're Here

We are currently at 24,000 ft. By the time I am able to actually post this we will most likely be in our hotel and ready to crawl in bed. Most everything has gone swimmingly so far. The airlines gave us all a little scare when we boarded in Denver by TRIPLE BOOKING my daughters seat on a completely packed flight! Several others had their seats doubled booked around us as well. We all stayed calm and they were able to find everyone seats. I was glad I didn\'t have to pull the "transplant" card to ensure we made this flight - but I would have if push came to shove. It was so nice to see everyone willing to move and having understanding attitudes. It doesn\'t always happen that way...
Tasia has the first appointments tomorrow beginning at 7 am with the transplant coordinator. I\'m excited to meet this lady as she has been wonderful to deal with over the phone for the last couple months.
I will update again tomorrow evening. Please stand with us in prayer that we get lots accomplished.

XOXO,
Jillian

UPDATE- the night got very weird after arriving in Minneapolis.... See Isaacs blog for more details. Trust me, you\'re gonna want to know what we\'ve seen and heard. Yikes. Crazy city! Very beautiful though!!! It looked nice and classy... Until the hookers showed up.

blackberry mojito cupcakes

L-O-V-E

Almost there

We are getting closer to BIG M week.  Airlines and hotel booked. Shuttles and rides scheduled. Schedules printed. Next things to do are -  writing out all of our questions (so that we don't forget anything) and packing. I have to say that if we have to take a trip to a University Hospital it would have been nice if it was the University of Hawaii or at least Florida.  Not totally excited to see the great city of Minneapolis but I have a feeling we won't be seeing much of it anyways.  I'm not nervous anymore. I'm excited. This is the trip of answers and determinations for Tasia. The idea of making a plan and having an idea of what needs to be done for her sounds great! We are scheduled 7am-5pm with appointments and tests of all different sorts each day for both. For Isaac, it's just red tape. They've already determined the surgery as necessary so it will be mostly a question and answer time. They will be  running tests one last time before surgery to see the current state of his portal vein and doing other testing as well.  I'm full of hope. I am expecting that we will be filled with answers and knowledge like we have been told by so many.

(weheartit)

On the emotional side -

I feel kinda numb. Like maybe this is a dream or nightmare. It can't be a nightmare because there's lots of happy in between. But it most definitely doesn't feel real right now.  Maybe that is all a coping mechanism. Maybe God knows I need a break from worry and stress.  It's easy for someone to tell me not to do all these things but it's a daily decision and sometimes struggle to not do them.  I'm mostly upbeat and full of hope.  Sometimes someone will start asking questions and as I start telling them what's involved in all of this... the words of doubt and fear and shock start pouring our of their mouths.  All I can do is start throwing out my feelings and thoughts of hope and positivity because I CANNOT dwell on the "what ifs" or fear.  Nope, not gonna go there. In fact I'm gonna run in the opposite direction and push that lump in my throat back down until I am the woman of courage again.  I refuse to be in fear. That's all there is to it!

(weheartit)

S'more Cupcakes Please!

Isaac and I spent lots of the afternoon talking about what it would be like if I had a cupcake shop.  We talked about flavors, cupcake names, decor, marketing etc. I made up a song and dance and we laughed our heads off!  I was so inspired I ran to the store and bought ingredients and made these babies...

S'MORE CUPCAKES

Tasia said she wants to learn the business. LOL!

For now we will continue to just enjoy the hobby. 

Cupcakes are boxed up and ready to go to my office tomorrow.  We will see what the girls think of these little yum yums tomorrow.

Have a HAPPY Sunday!

XOXO,

Jillian