Update from Childrens visit February 4th

Here is the information we took from yesterday. First, it is overwhelming to try and wrap my head around this complicated issue. She has had tests on top of more tests, and has taken each one like a trooper with few complaints. I am so proud of her. When we got to Children’s the specialist clarified the reason for two of her tests: First blood test indicated liver issues, blood flow problems to the liver, which would cause liver failure. Went right to ultrasound, results came back “Perfect”. No problems with liver.

Rheumatology. The study of disease where the body turns on itself. Again blood tests indicated that she might have problems with something related to these issues. Went right over to Rheumatologist where she did a full body exam looking for visible signs of lupus, arthritis, thyroid issues etc… NO VISIBLE SIGNS or reason for immediate concern. Took more blood and urine tests, waiting for results.

Both above causes can contribute or cause pulmonary hypertension. Two more issues off the list, which still leaves us with…. No answers!

Surgery on Tuesday will tell the doctor what she needs to know to prescribe medication to get the oxygen extended all the way out into the lungs. To open the tubes that are restricted so she can function without overextending her heart.

So waiting again… for the procedure on Tuesday. Then we will have some direction. Planning on starting medication by Wednesday.

We spent a tiny bit discussing the two most dreaded words I can imagine… life expectancy. I barely listen but what is clear is that this is a serious disease and it making her life so much more difficult. After they get in there and see what is going on we will know a lot more about that.

I fall back on what I know for sure: God has an amazing plan for Isabelle. He will stand in the gap and bring her out of danger, He has before and He will do it again. I am incredibly grateful for the staff at Childrens, I am, but my faith in God remains the same. He is the ultimate physician and I will continue to ask Him to take care of the gift He gave me so I can be with her for a very long time. Thanks for praying…truly.

Love, Amy

Next Up...

Thursday February 4th: Arrive at Childrens at 7:15 am, Liver Ultrasound, visit with Pulmonary Hypertension specialist about surgery next Tuesday, echocardiogram, visit with Rheumatologist, blood draw and finally fitting for new ear mold. Bellie, I promise I’ll hold your hand! Thank you everyone for praying, it is appreciate more than I can express in words. We need some answers...

Date Night

This fine looking lad is my date tonight. I can't wait. We are going out to dinner and to a movie and then heading home to watch our favorite cartoon... The Smurfs. Hopefully by the end of the day this worried look he has been carrying around will turn into a big smile.

Childrens Visit, January 7th

Thank your for praying for us, truly it is making a HUGE difference. We made it back from Seattle late this morning. Yesterday was a full day of information and testing but not a whole lot of answers. I had prepared Isabelle for more heart monitoring and echo cardiograms but we were not prepared when they took her back to put in an IV. I am so thankful that Auntie (Christine) was able to come. She was a huge help for convincing Isabelle it had to be done and taking the pressure off of me to “make her”!

We are still in the process of gathering test results from all the tests that have been taken. More tests than I ever thought possible. They have taken enough blood for hundreds of tests, at least that’s how it looks to me! Here is what we know for sure…

FACTS:
-Isasbelle will be having surgery in approximately two weeks. During this surgery the doctor will insert a catheter into an incision in her groin area and threat it up into her heart. There they will test for exact pressures as well as several other tests that will help the specialist determine which medication to start with.

-Isabelle did not have any of the chemical in her system that indicated heart failure. She looks great and is not in a critical situation. She does however have a level of pressures that is on the more serious side.

-Many test results have come back normal, which is great but also a bit frustrating because if we find something we can treat completely that will help to solve the high pressures in her heart. Examples: Sleep apnea, blood clots in her lungs, lung disease. All great things to NOT HAVE but still not showing us why or clues to treatment.

-Her first treatment after surgery might come into her system intravenously. L The medication would have reconstructive properties but she would have to have an IV in at home. Or, the specialist (Dr. Yung) will start her treatment with oral medications.

-There is not a quick fix to this problem. It will be a long haul with many trips to Childrens. This is a problem that we will have to watch carefully for her lifetime. No cure, just treatment. But then we have Jesus so there are no limitations for what can happen!

Blessings:

-We have Childrens and the specialists with all the current and up coming new drugs and facts about Pulmonary Hypertension.

-Her oxygen levels at night are not a huge concern at this point. She is sleeping safely.

-Isabelle gets to return to school as long as we are certain that she will not be in any situations where should could over exert herself.

-We have the most loving awesome family, friends, church family we could ask for!!! WE FEEL YOUR PRAYERS!!!!

Prayer Requests:

-Test results will continue to not reveal serious concerns yet a reason will be found for why the Pulmonary Hypertension exists in her sweet little heart.

-She will remain healthy everyday (free of colds, flu’s, etc…) Especially leading up to surgery and the start of treatment.

-That I will not have a heart attack watching for her to have a heart attack!!! I am already secure in the fact that she is in Gods powerful hands but it is still hard for me to see her struggle and to know her insides are not working right.

-That Isabelle’s body will respond to the medications when we start them.

-God has had His mighty hands on her since the second she was born. He has saved her from many scary moments and I know He has an amazing plan for her life! Pray for the long, long, healthy life He has in store for her!

-Lastly pray for Joe- He is gone (flew out early this morning) to see his mom in Missouri. She is in testing to see if she might have ALS Lou Gearigs and is not well. He is really worried about his mom and Isabelle. It is hard for us to be apart with all this going on. He will return in NINE days!

Upon arrival, still happy...

"I'm not going to let you"... Auntie to the rescue!

Did it! Onto testing...

Tomorrow: Childrens Today: Smiles

I have to tell each of you that we can feel your every prayer! God has blessed us beyond measure this week with His peace and focus on His promises! We are so grateful for all of your loving prayers, phone calls, emails and love you have shown for our sweet daughter! We are excited to return to Childrens in the morning to have more testing done to see exactly what can be done for her heart. We will have a full day of poking and prodding, then spend the night in Seattle. Hopefully in a hotel, not a hospital bed! It will not be until Friday morning that I can update you on our findings. Please continue to pray for healing and wisdom for the doctors and nurses that will be in charge of her care.

We love you all!

Amy, Isabelle and family

p.s. This was us sneaking away to the park yesterday afternoon. We had been cooped up in the house all week and when Isabelle asked to play at the park we just had to take her! ALL SMILES!

Please Pray for Isabelle's HEART!!!

Hello everyone...

On Monday 12/28 we got a scary diagnosis from Children's hospital in Seattle concerning Isabelle's heart. Here is an overview of what happened as well as our prayer requests. She is happy at home, laying low with us. We are to keep her away from potential germs and and make sure she does not over exert herself in anyway. Because of that she will not be going back to school. I am really scared and excited at the same time to get back to Children's on Thursday. I will try and keep anything we find out up to date here. I can't thank you enough for all the prayers!
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be known to God; and the peace of God which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Phil 4:6-7

I am leaving the emotion in my original email I wrote when we got home Monday night....

Written Monday night 12/28:

I am writing this in an email because to be completely honest I am on the verge of a panic attack... I am trying to stop crying. Joe is here and is committed to praying with me and handing me kleenex, so I feel like I have support. Today Isabelle and I went to Children's in Seattle for some "routine" tests on her heart. I will back up just in case you don't have the whole story. In October Isabelle had the swine flu, or the flu, regardless she was really sick. When she didn't fully recover I took her back in for breathing problems. A new nurse practitioner (a Christian) fell in love with her and really spent a lot of time with her. She started treating her for Asthma. When I took her back for a re-check I told the nurse practitioner that the breathing problems were not getting better. She sent us to Children's on a "hunch".

After five hours of tests she has been diagnosed with Pulmonary Hypertension. A very serious heart condition. The pediatric cardiologist entered the room with "I have really bad news" So there is a lot to say that I can't actually say out loud right now. First we will be going through a lot of testing to see WHY SHE HAS IT. The blood pressure inside her heart is almost twice what it should be, her heart is having to work way too hard. There are many, many reasons that can contribute, cause, or make the condition worse. She is on a heart monitor for the next 24 hours (at home) and they will be sending a nurse out to the house to set up oxygen for night time, she will be tested for sleep apnea as well. They took tons of blood today, we will return on the 7th for continued testing.

First Prayer Request: That the specialist at children's will be able to correctly find the cause.

After they find the "why" THEY WILL BE ABLE TO START TO FIGURE OUT HOW TO TREAT IT. There are very few cases that surgery will make a difference. Most cases are treated with a multitude of drugs. Depending on the cause a medicine or medicines with be picked.

Second Prayer Request: Her life expectancy is all dependent on how well her body will respond to the treatment. WE NEED COMPLETE HEALING FOR HER!!!! GOD HAS BEEN 100% FAITHFUL TO HER SO FAR AND I KNOW HE WILL BE AGAIN. I want the doctors to already be amazed when we go back before we even start treatment.

PLEASE PRAY FOR ISABELLE AND THAT WE WILL BE ABLE TO DO EVERYTHING POSSIBLE TO GET THE BEST TREATMENT. PLEASE PRAY FOR ME AS I ADJUST TO THIS NEWS. I KNOW I WILL SETTLE DOWN AND FEEL NORMAL AGAIN BUT RIGHT NOW I AM BUZZING WITH HURT, FEAR, ETC... PRAY FOR PEACE FOR ME, JOE AND THE BOYS AND FOR SEAN.

I love you all, I just can't talk on the phone right now. I am a wreck and I know talking about it, at least for a little while, will just make it worse.

PRAISES!!!! That we ended up at Childrens today. If not, they said she may of not made it six more months untreated.

Childrens hospital has a pulmonary hypertension specialist!!!! A woman who has dedicated her career to only this and she is right in Seattle!

Thank you Jesus for guidance!

Thank you for your beautiful love and friendship and for going to the thrown on Isabelle's behalf!

We love you all!

Amy

p.s. Please put Isabelle on every available prayer chain. Jesus is all we need!

"The best Christmas Ever!"

This is what you get when you say "Absolutely, positively NO!" when asked an xbox 360 for Christmas...

And then your dad surprises you anyway...

Merry Christmas!

My dad just emailed me this for Christmas... Isn't it the best gift.

Trains and Trees!

We rode on this steam train today! It is only running thru Sunday so if you are interested let me know and I'll give you directions. Free, pet food or people food donation.

She is sooo cute! All said she kept saying over and over crystal clear: "I help you!" I love it when she talks and can be so easily understood!

Here is Charlie Brown...

Gobble, Gobble

I hope you all had a fantastic Thanksgiving. We enjoyed this year just the five of us. It was fun to cook our meal together and watch the Macy's parade and football. We had a wonderful meal and then got to go to the movie. The Blind Side, highly recommended.

We are grateful this year for all of our blessings. I am asking if you don't mind to continue to pray for direction for our family. My husband really needs a job. We know God has a plan for us but the wait has been long. It has been over a year and all the experience Joe has is in items that are not moving: houses, mortgages, cars, etc... Having only commission and being new in this small town is difficult! He is struggling, trying to find where he belongs. He wants to work and it is hard to see him at home day after day wanting to get out there. Thanks for praying, praying God will find him a job quick!

Happy Thanksgiving!

Jack was my helper this year... Decorations, potatoes, cranberry sauce. Very helpful.

Happy Happy Haircut!

Here is my little hippie-freak... yesterday. Mailing out his B-Day invites. Ode to the year of the camp-fire. If you fall in one and nearly burn your hand off we may as well celebrate the beginning of his 8th year with an indoor camp out, a little fire is not going to scare him...

Now look at this cute boy!! Ship- shape. I'm thankful for haircuts.

Boo

Halloween is here again!

I love this boy... This all comes from him. He just loves her, no matter what.

Two Things... Well actually Three

First it was a beautiful Saturday morning for football, no rain! There are two facts about this game that made it extra special. Two circumstances that brought out a beast on the field, an animal ready to play. One, how cute is Ethan's 4th grade teacher, she came to his game. Ethan asked me two times... "Mom, is she here yet?" It was so cute.

Thank you Mrs. Allen for taking the time to make your students feel special!

Secondly these two... I don't know if I should share this info or not. It worked so I am sharing. E was paid! 5 bucks for every solo tackle, 1 buck for an assisted tackle. A dollar lost for missing a tackle from the offensive line. A bit whacked but it worked. Ethan was on fire and dad is out 15 smacks!

Here is our friend Hayden... And the ball was gone, gone, gone. 26 to 14.

So fun to watch!

I'm really looking forward to this...

Another soaking wet football game. Kick off- 8:00 am, drop off an hour before that. (that was sean's job :) Come on slop, muck, mud, and mire! Go King Nissan!

A stunning way to pick up some pumpkins...

Cascadian Farms... is great but it is the way there that is really breathtaking! It is out HWY 20, 3 miles past Rockport. It is may favorite "no-frills" patch. A perfect Sunday afternoon.

Pics Here

This sweet church was even having there 3:00 every other Sunday service. Right out of a Movie!

EE turns TEN! Happy Birthday sweet boy!

Make a wish...

This is how we start the day, every year...

Ethan's request was an airsoft party and he is lucky in the fact Joe said "Yes!" mom was not as excited...

Blurry but still cute

The long awaited gift... a big bad airsoft riffle. Again Joe bought it, not me :)

And then it was on... The War!

This would be the man laying down the airsoft law! 

Okay now I can see by this why he thinks this is fun.

ooohhh... scary.

Happy Tenth Birthday EE!

It Starts! EE's First Game...

We had the best time yesterday at Ethan's first official football game. It was a blast to see the team come together and succeed! 28 to 7! I can see the more experience they have the more fun the games are to play and watch. So I am happy to say I can't wait for each Saturday game from here to Halloween! 

Disclaimer: These are not the pics from the game on Saturday as we left the house at 6:20 am, I'm lucky I remembered to change out of my pajamas! These are from the "practice" games from the Jamboree. 

Go 22! Whooo Hoooo!!

This is what the dads do... explain the game, explain the strategy. Over and over and over!

Proud Mama!

School Days, School Days!

Is this not the cutest middle schooler?! Well we did it, made it to the first day of school with all the necessary preparation. And I'm exhausted! As are my three school going children. Mmmm, I i just love this time of year. I'm going to go put them all to bed and have a glass of wine with my husband. Yea school! 

Forth Grade!!! 

Once again... Check this out.

In front of her new school. Kulshan Middle School

The Salmon Catchers

Salmon slaying in the Skagit River...  We had a great time, catching BIG fish! 

This is what the dads do... over and over.

Catching Salmon is a whole new world... We have come along way from worms on a hook baby! 

We actually needed a diagram courtesy of a cute fisherman from Holiday Sports and two moms humble enough to ask!  And we'll be back. Simone and I want to stock up our freezers!

It's over, my nursing days are over!

 Well to say I am amazed at Gods healing power would be a huge understatement. Jack is nearly healed, the skin is discolored and he still has some cosmetic healing do to but the burns are all closed up. I am so thankful this nightmare is behind him. I am thankful we have been able to return to our life free of doctor visits, dressing changes, pain and Advil. Now that Jack is on the mend we have been trying to squeeze the most out of this summer, I will have more to come but for now just Jack being able to be Jack is enough to keep a huge smile on my face. 

Don't you just love new school shoes... I wish these were big on him but honestly he just has huge feet! 

Thank you again for all your prayers, please let me give you the same if ever the need may arise. 

Love, A

Everything is better with friends...

And by the look on these smiling faces, everything includes injury. 

WARNING:

Camping may be Hazardous 

to your Health! 

We may need to have some signs printed up! Ethan B. fell last Saturday night while camping and got this injury. A hairline fracture... 

I have to brag a bit about Jack... He has handled this burn so well. We will return to the Burn Clinic in Seattle tomorrow to get an update and a continued plan for healing. He has faithfully let me clean it, pick at it, and wrap it up without complaint. Part of the process is to remove the dead skin so the new skin can feel the medicine. So that is what we have to do... Cut and peel it away with surgical tweezers and scissors. And today he wanted to do it himself. He is very brave...

Today, Day 10...

Taking matters into his own hands... literally.

Sweet Boys... I love that you have each other. They are even having a play date. What the heck, they are both on Advil!

This nastiness was DAY 5...   I am squeamish by nature, I hate blood and throw up. I hate all things medical. But I have to say I am amazed by Gods design for the human body. To watch daily the process of a healing burn is more than amazing. And it does not even gross me out anymore! Thank you God for healing.