Evie’s June trip to Children’s Hospital


We went to Children’s hospital yesterday.  We were met with much traffic and arrived about 20 minutes late for our appointment.  Fortunately, so was everyone else, so they were very understanding.

Hematology
Our first appointment was with the Hematologist.  We have now met with him twice and have been so impressed with the way he treats us and is so thorough when presenting all of the information.  It has been two weeks since Evelyn’s neutrophil numbers were checked, they were 220 at her last visit two weeks ago and they were 100 yesterday.  So, needless to say they have not improved.  It’s interesting that I felt like I already knew they were going to be low again.  In my prayer time I had felt the Lord calling me to be patient and to trust in Him, and to trust His timing.  So when the doctor gave me the news about Evie’s numbers it was as I had expected…  He has her wrapped in the palm of His hands and though I don’t know when this part of her body will start functioning properly, I do know He is faithful and is with me end Evie every step of the way…

The Hematologist said that her blood work otherwise looks very good and that he continues to feel that we are simply waiting for her body to recoup.  He also said that her blood continues to imply that she recently fought a virus but as time goes on, as the neutropenia persists, it is more likely that this is an antibody issues, even if it started from a virus.  He said the antibody issue almost always resolves itself but can takes months to a year to recover.  So – we wait on the Lord!

EEG
After the first appointment Evie had a follow up EEG to confirm that the level of Vigabatrin is still working for her.  This time they used a flat board with large straps that secured her tightly to the board only able to move her head to the left and right and her wiggle her legs and toes… She did so well.  Can you imagine someone strapping you down and performing tests on you and never knowing why are being able to ask why this is happening.  She acts like this is just what babies do…   With barely any protest out of her they were able to get her all setup with all of the EEG leads very quickly.  Then, as the tech’s and I talked about how to try to get her to sleep in her current position we looked over and saw she was, oh so compliant, and was completely out cold.  They were able to get all the readings they needed and after 15 minutes said we needed to wake  her up.  Poor thing was sleep deprived for the test (per their instructions), then once she got herself into a nice deep sleep, we had to wake her.  It got to the point where the tech and I were hysterically laughing because NOTHING we did could wake up Evie.  We were shaking jingle balls over her head, rubbing her arms and legs, slamming the door, taking the giant pieces of Velcro and opening and closing it right over her face… nothing was working.. so the tech took a cold wash cloth and dripped water over Evie’s face – now that is a very uncool way to wake up…  Evie was startled and was about to cry, but I was able to distract her with a game of peek-a-boo.  Once awake they performed a strobe light test to test for light sensitivity and then they were able to unstrap her.  She was such a trooper, as always.  We do not have the results on the EEG, we have a follow up appointment on June 20th with her Neurologist at Children’s, but I know if there was great concern with anything on the EEG I would have heard from them already.

Evie’s Midnight ‘Episode’
We went home after that test, Evie napped on the ride home, and then we melted at Callen’s baseball game…

Upon arriving home before Callen’s game I realized that in the busy morning routine with planning to go to Children’s for the day, I forgot to give Evelyn her Vigabatrin in the morning.  It was now 5:00pm and I did some research online and decided to just give her 7:00pm dose at 5:00pm (right then) and get back on track in the morning.  All of the posts I found indicated that doing that should be fine.  Well….. Evelyn woke up around midnight last night hysteric, I’ve never seen her so hysteric… she was inconsolable, her eyes were glazed over, she could not focus on me or Todd and was extremely ‘floppy’.  We called the neurologist on call and they told us to give her a second dose of Vigabatrin to get her ‘caught up’ on her daily dosage.  They said if we couldn’t get her to ‘come to’ then to take her to the ER.  After some time I was able to get her to play with a ball and grab at some toys.  Then I was able to get her to splash her feet in the bathroom sink with water and I felt as though it was safe to get her back to bed.  She woke up this morning seemingly okay.  I’m not sure if she was having seizures last night, it really did not look like it… I think her brain was just a little over worked and under rested.  It is so important for her to get her naps and stay on a routine as best as possible given that the Vigabatrin tends to make her very drowsy and that lack of sleep can be a trigger for seizures.   Tonight she was able to get to bed by 7:00pm and hopefully she’ll be back to getting rested.

Being a Family Again – Together – All at Once!!!!
We had Annabelle’s kindergarten graduation today and we took Evelyn.  It was overwhelming but I just prayed for the Lord’s protection over her body and for peace for me, and I enjoyed just being a family again, doing a ‘family thing’, together as a family!

We are excited to bring Evelyn back to church soon, either this week or next week is our plan… just depends on how she recoups from the last few days – she had a busy week with therapy on Monday (which, by the way, she was AMAZING at therapy – making leaps and bounds), blood work in Lexington on Tuesday and at Children’s all day yesterday…  I really can’t wait for our church family to see Evelyn, it’s been nearly 4 months since many have seen her and she’s growing so much…  Her neutrophil numbers are basically absent at 100, and she remains extremely immune compromised, but in all of this we know that the Lord can guide us and help us to be a part of our church family again while keeping Evie safe at the same time.   As we take these steps of faith we will walk in wisdom and He will carry us, direct us and give us peace!

Prayers answered and progress being made!
I am constantly reminded of how many people have prayed and are continuing to pray for Evelyn and it is humbling.  She is doing so amazing, she is able to be placed in the crawling position and she’ll stay there for a few seconds now.  She eats crackers and baby ‘cookies’ and is bringing these hand held food to her mouth for the first time ever!  She has been eating one or two servings of baby food each day which she was not doing at all until last week (stopped eating all together two weeks into her medication Vigabatrin).  She is saying sounds like ga, da, and ba again and will even wave bye bye or clap for ‘yay’ on occasion!  Thank you all so much for praying for our sweet love and for our whole family!

Praying that the Lord blesses you and that today you have the opportunity to see God’s hand moving in your lives as we are seeing the Lord move every single day!

Love,
Jill

  1. #1 by Tammy Drusendahl on June 9, 2011 - 9:44 PM

    Jill… I have been so Blessed hearing of all the Miracles with your precious Evie. It gives me Hope. Thank you for sharing your struggles, triumphs and doubts.

  2. #2 by Lori Greene on June 9, 2011 - 9:49 PM

    Hi Jill,

    I’m still praying for your little angel and for strength for you.

    After I read the part about Evie willingly being strapped to the board for her tests, I thought of how much God wants us to trust him that way, with child-like faith. To be oblivious in complete trust is a difficult thing to do, but so necessary to fully receive all God has for us. Sometimes I feel like I have to know what’s going to happen next, but in God we rarely know until we need to know, which strengthens our faith even more for the next time.

    Be encouraged Jill, God will never leave you nor forsake you. After seeing Evie’s faith, I am encouraged in mine. She is a testimony and doesn’t even know it. Thank God!

    Hope you enjoy the rest of your week.
    Love & Prayers
    Lori

  3. #3 by Dawn Kalgren on June 10, 2011 - 5:25 AM

    Thank you for the update Jill. We will continue to pray for all of you! Love you!

  4. #4 by Julie on June 10, 2011 - 12:43 PM

    Once again I am blessed by reading your posting. You write so well with every word from your heart. We are continuing to pray for her each day and will. Colin also prays for “eleven” every night…lol. Love you Jill:)

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