Archive for May, 2011

Back from Boston

Evelyn was such a trooper today.  She is such a blessing and my love for her can’t even be expressed in words.  Callen and Annabelle have become so understanding and have really begun to embrase their roles in helping keep Evie safe.  The Lord is really using this time to show Callen and Annabelle perspective, to learn to look ouside of their wants and desires and put someone else’s needs above their own.  It is wonderful to watch them grow and become closer to the Lord, to eachother and to Evelyn.  I am a blessed woman and love them all so very much!

The first sigh of releif – After our trip, the hematologist called and confirmed that she does not have Leukemia (which is one cause for neutropenia) – PRAISE THE LORD!

After having bloodwork we met with the hematologist.  Her bloodwork showed her neutrophil count or ANC (Absolute Neutrophil Count) was .22 or 220, which is up from .1 / 100 from yesterday!!   He reviewed all of Evelyn’s previous tests as well and said he felt confident that the issue causing her neutrophil to be depleted is either a virus or an antibody issue.  There is certain types of activity in her blood work that are indicative of a body that has recently fought a virus.  He also saw some other activity that you usally see just prior to neutrophil going up.  He was very hopeful and encouraging.  Neutrophil recovery from a virus, he said, can take days, weeks or even months.   If the underlying issue is an antibody problem it generally takes months to a year to recover.    So, moving forward, regardless of whether it is a virus or the antibody, we need to keep on doing what we have been doing to protect her from germs and they will periodically keep testing her levels.  They said that, while her numbers are below 500,  if she has a fever over 101.00 for any reason that it’s a trip to the ER and IV antibiotics.  I asked if we could do bloodwork first to see if the fever was viral or bacterial and he said that unfortunately we can’t.  Though she would not need antibiotics for a viral infection, only a bacterial infection, they cannot wait for test results to come back to begin a course of IV antibiotics.  The risk is too high with how life threatening a bacterial infection could become, very rapidly,  given her condition,  while we would be waiting for test results to come back in.

We left feeling very encouraged and must rest in knowing that the Lord has her in the palm of His hands.  And while we don’t know the timing of her healing, the Lord does, and we can trust Him with that!   It all comes down to trust – wanting to know the outcome before we get there… If I trust the Lord, I don’t have to worry or fret about an outcome – He has it under control and is in control! 

Thank you all for your continued praying, I know I say that a lot, but I mean it each and every time.  Prayer is what is getting us through these difficult times.  God is good, He is faithful!

Love to you all,
The Cote’s!

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Evie’s Neutrophil Numbers

Hello Everyone,

Evelyn had her blood work taken today and the results came back poor.  Her number did not increase over the last eight days, it decreased.  It went from 330 to 100.  They are referring us to hematology in Boston and we are heading down to Boston tomorrow morning.  We are continuing to pray for her protection and for wisdom on how to move forward.

I’d be lying if I said I wasn’t overwhelmed… I’m continuing to keep my eyes fixed on Jesus!  Praying that God will heal her sweet body, renew her body and her strength! I love her so much and I want so badly for her to be okay, I want my kids to be able to cuddle with her and roll around with her.  I want to enjoy her with friends and family and praise the Lord with her at church… Jesus, please hear my prayer… She is so strong and so brave!

For further updates:
During the time that I was in the hospital the first time I kept reading the story of a little boy named Logan Andrew (http://loganandrew.com/Logans_Story.html)  I was so encouraged to hear what they went through, all they overcame, and that I wasn’t the only one who has traveled this same journey.  With all that the Lord has shown me during this time I decided to start a web-site for Evelyn so that others going through what we are going through might find our web-site and learn that the true hope that we all seek only comes from the Lord…  All of Evie’s latest updates will be on www.letfaitharise.com.  I can’t tell you all how much it means that you have continued to join me in prayer for my sweet baby… The Lord has heard us all along and I know He hears us now!

Thank you all so much,
Love Jill

Evie’s Sue’s Updates:  www.letfaitharise.com

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Trip to Children’s Hospital tomorrow…

Hi Everyone!

Praise the Lord Evie’s numbers were up yesterday.  As of yesterday her neutrophil number was .33, it doubled from two days prior.  Once she hits the .5 mark she will only have ‘Neutropenia’ and not ‘Severe Neutropenia’.  We’ll take it!  A step in the right direction!

First Eye Exam
Evie has her first eye exam tomorrow at Children’s Hospital because of the drug Vigabatrin that she is on.  Vigabatrin comes with a risk of partial blindness in the peripheral vision.  They perform a special eye exam to get a benchmark so that in the months to come they can re-test her vision and make sure things aren’t changing.  We’ve spoken with the office already and they are aware of her compromised condition and have assured me they will take all necessary precautions.  Please pray this goes smoothly…

10 Months Old and Teething
Evie is 10 months old today and she cut her first tooth!  She’s been a little upset today, poor little thing has sore gums :(   It’s amazing how watching her go through something like teething brings me so much joy, because that’s what 10 month old babies do!!!

It’s all in the preparation!
When I think of the battles I’ve read about in the Bible it’s not the size or strength of an army that makes them win, it’s the preparation that leads to victory!  To victory and freedom!  As I entered the hospital with Evie for the second time here in town I found myself spiritually unready.  Though my artillery was the same, the lack of preparation brought struggles.  Having had such a time of intense study and closeness with the Holy Spirit before heading to the hospital the first time I found myself shaken, but not moved.  This time around I fought fear, anxiety, pride, you name it…  As Evie found herself pricked by the phlebotomist after pricking herself I fought feelings of anger and judgment.  I sought what I called ‘justice’ when really I was looking for pity for the situation we found ourselves in.  It took quite a few days for me to realize what was going on when I sought the Lord.  He was so gracious and in it all gave me opportunity to share His goodness with others.  He even brought me a woman, who drew Evelyn’s blood, that shared Christ with me!  A reminder of what it is all about!

Oh Lord I pray for your forgiveness.  You’ve told us to be ready, to dress ourselves in your character and to conduct ourselves in your likeness so that the people of this world may know who you truly are.  Thank you for being such a gracious God that you would still allow me the opportunity to rise above and share the Good News!  Thank you for protecting Evelyn from any further infection or sickness.  Thank you for taking her fever away.  I pray for continued protection for her as we head to Children’s Hospital tomorrow and continued growth in her immune system!

Love & Blessings to you all,

Jill

 

 

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Neutrophil is heading in the right direction!

Just a quick post – Evie’s neutrophil numbers went from .14 (which equals 140) to .33 (330).  Thank you Jesus!!

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Update on Evelyn…

Hello Everyone,

Just a few weeks ago I was telling Todd that I was afraid that all the Lord had taught me during this time would not ‘stick’, that the things of this world, all vying for our attention, would distract me from the things of the Lord and all He had taught me. I was praying that I would never see with my old set of eyes and that the new perspective the Lord had given me would remain. Well, we are back in the hospital tending to Evelyn and perspective has once again knocked on our front door.

We were on a vacation. This was a big step for me to take Evie out of the home, but I had talked with the lodge, they had promised they did a thorough cleaning. And I was coming armed with disinfectant wipes to sterilize the place before we brought Evelyn through the front door.

As we arrived I took her out of her car seat and she felt very warm. I told Todd I thought she had a fever and he went off to the nearby pharmacy and bought Tylenol and a thermometer. Her temperature was 102.0 and we had been instructed that anything over 100.4 warranted a call to the primary care physician.

After many phone calls to the doctor, and treating Evie with Tylenol over night, we drove back home on Saturday. We have been at the Hospital since then. Upon arrival they took Evelyn’s blood and during that procedure the phlebotomist pricked herself and then Evelyn, contaminating Evie with her own blood. This is one more thing we’ve needed to over come… trusting God that Evelyn was not exposed to any harmful diseases when this contamination happened. While here at the hospital she was treated with strong antibiotics to reduce the fever she had and she was monitored. Evelyn’s fever has been gone for almost three days. However, in the process of treating her fever, some blood work revealed a very low level of white blood cells. It also revealed that one type of white blood cells that are called neutrophil were measuring at 0.03. This reading of .03 equals 30 neutrophil, as I understand it. A normal range of a healthy person is between approximately 1.5 to 7.0 which equals 1500 to 7000. To have a neutrophil level of .03 = 30, is considered a condition called ‘Severe Nuetropenia’. Having ‘Severe Nuetropenia’ means that Evelyn cannot fight any type of infection at all. Over the first few days here at the hospital her levels dropped to zero. We found blood work that was performed on Evie back while she was on ACTH, which suppressed her immune system, and while on ACTH her neutrophil level was 3.0 which is 3000.

As of this morning the neutrophil raised from zero to 50… still much to go, but we are expectant as we wait on the Lord. The plan is to stay here for a few more days while her numbers increase and then to go home and test weekly. During our time home we will have to be even more diligent about germs and keeping Evie safe from germs. Her immune system is worse than it was on ACTH.

Thank you all for your continued prayers. My sweet little one is calling and I must run to her aid!

Love to you all,

Jill

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