To our supporting and prayerful “family” –
After our last e-mail, I was overwhelmed at the e-mails and cards we were receiving from friends and family (and friends of friends and family J). Unfortunately, our journey did not end in May when I sent out that last e-mail…
We started noticing Ahnya’s vision deteriorate and felt like it was the only thing actually getting worse, rather than better. Follow up appointments with my PCP and the pediatric ophthalmologist led to us moving up the date for the follow up MRI that had been planned for the end of June. On June 7, we went back to The Children's Hospital to try to put some closure to the whole situation. The MRI went well and recovery was fine – Ahnya was back to her ornery little self in no time. Knowing (actually, assuming) that everything was fine, I was able to attend my 5th graders’ graduation ceremony that afternoon for some final farewells. That same day, I was on my way to a baby shower that my co-workers put together for me, when I got a call from the neurologist saying that the MRI results showed her condition much worse and they wanted to re-admit her to figure out why. My heart just sank at the thought of going through such an ordeal again. I felt like we were back at square one – this time, much more pregnant (37 weeks); showing less patience and tolerance; and weighed down by a weary, confused heart. I wanted to collapse at the thought of putting more effort into something that seemed to never end.
Driving back to Children’s Hospital that next day felt (eerily) second nature to me. Within 4 hours of re-admitting her, she had amazed all of her specialists (neurology, infectious disease, opthalmology, and a team of pediatricians). Other than her vision, and a few problems with recalling some vocabulary, Ahnya had made an amazing recovery. It was a mixed blessing to have her feeling so good and acting like a normal two-year-old this time. She was running around the room, jumping and galloping down the hallway, and singing/screaming Twinkle, Twinkle Little Star for anyone that would listen. That first night back in the hospital, Jonathan and I were shown the MRI scans. They wanted us to see why there was such a concern. At this point, I was fighting my (hormonal) frustration of not understanding what we were doing back in the hospital and my pure exhaustion – especially when it came to understanding something so technical, I just wanted the neurologist to just make the decision and tell me when it was over. I was, however, extremely curious to know why she was surprising everyone with her recovery. As Jonathan and I viewed the actual slides of the MRI, I began to realize what a miracle we were all witnessing. The neurologist showed us what was gray matter and white matter in the brain, what was virus, and “probably” dead tissue. He showed us where this type of virus “usually” settles in the brain and how it was in a different area for her. Jonathan and I kept looking at the slides and listened to his voice saying over and over again, “This part was affected by the virus… this part was, too…and this part…this part, too….” After we had gone through the 20 or so slides, he looked up at us and said, “I have no idea why your child is even walking at this moment. The virus is in so many places in her brain, she shouldn’t be able to do most of the things she is doing today.”
…Wow. I guess that’s good, right? Well, they were still puzzled at why her sight was getting worse. They also were unsettled at the idea of never getting a positive test result for exactly what virus she really had in the first place. They told us the only way to really understand whether more treatment was necessary and the extent of the damage to her brain, was to do a brain biopsy.
On June 10, at 8:15 a.m., our pastor stood with us in the hallway of neurosurgery and prayed for our little one before we left her in the capable hands of one of the best pediatric neurosurgeons in the country. We spent the next 3 hours in the waiting room awaiting the two promised phone calls, that would inform us of the progress of the surgery. What is weird is that we were told of the complications this surgery could have and that is all I could think about during the surgery. I even got to the point of “forgetting” her illness for awhile because I was so concerned for her immediate circumstance. What was difficult for Jonathan and I was that usually people go into surgeries to fix something not working. This surgery had high risks involved AND was only going to (hopefully) give information, not actually fix our problem. The neurosurgeon, our infectious disease specialist, and the anesthesiologist came out when it was over. The neurosurgeon explained to us that the surgery went great – actually faster than what he expected. He did, however, tell us that there were some abnormalities that he could see even with the naked eye. He said that the brain tissue he took was more yellow than it should be and softer than “normal”. He also explained that when he cut into the tissue, fluid came out. My elementary-science-teacher-brain immediately thought, “It sounds like something that is decomposing or deteriorating.” My heart didn’t give my mind enough time to process…I wanted to see my little angel. They said we would be getting a call in a couple of minutes from recovery, when Ahnya was awake enough to start asking for us. Sure enough, in no time Jonathan and I were walking through the double doors to see her. She was squirming around so much they had to put “no-no’s” on her. No-no’s are splints that they put on patient’s arms to keep them from pulling on or touching things they shouldn’t. When I looked at her, she had a thin, little tube coming out from the top of her head to help with fluid around the wound. She was talking to us and just wanting to be held in my lap. Someone asked me if I wanted a drink and she said, “My momma likes coffee!” Then she proceeded to recall (in detail) something that had happened 3 days earlier about momma liking coffee. It was ABSOLUTELY amazing. My child had her brain exposed to the outside world and 45 minutes later is talking, laughing, and recalling information! What an answer to our prayers!
Within 3-4 hours of her surgery, she was walking around and wanting to eat. Our little Ahnya was rearing to go, and within 24 hours had managed to pull out both the tube and her IV. Monday night, we got the preliminary results back from the pathology report. We were told that they were pretty sure it was the Herpes I virus that she had in May that caused the encephalitis. What they weren’t sure of, is whether or not the virus was dead, or still causing damage.
After recovering completely from the biopsy, we were sent home and told we would hear of the complete results by the end of the week. I should have known not to say, “I’m so glad this is finally over – we can move on and deal with life as we now know it.” Within 24 hours we were readmitted to start another PICC line and antibiotic for the virus. They wanted to make sure that the virus they saw in the biopsy, was actually dead. I was so tired. My body hurt (now 38 weeks pregnant), my head hurt (from all of my new, unsolicited, medical knowledge), and my heart hurt (for my little girl, who I thought would for sure be tainted from another 21 days of antibiotic through an invasive PICC).
I was once again reminded of my own strength through my faith. Still thinking that I deserved at least one nervous breakdown, God provided again and I was blessed with my mother’s presence for 13 days! The first 3 days of her visit included me training her in how to give Ahnya her IV meds through her PICC – just in time for ME to be admitted in the hospital on June 21! Elias Paul joined our family at 8:04 that morning. What a joy in the midst of uncertainty and exhaustion! We were blessed with a perfect little son at the end of all of these trials.
Although I am still unclear at God’s timing, I take comfort in knowing He’s in control. I serve a perfect God in an imperfect world. I have learned to enjoy every second I have with my family. I don’t stress about the unmade beds or a call out in the middle of the night. God has chosen me to be the mother of these three beautiful children and I am so grateful for every memory I can make with them. God has promised me perfection someday and until then, I will try to make him proud of what he has blessed me with here.
Ahnya continues to amaze her family, friends, and doctors. Two of her specialists shared with us that they have never seen an encephalitis recovery progress this well. Her ophthalmologist diagnosed her with Cortical Vision Impairment What that means is that the “lasting?” results to her eyes have more to do with where the optical nerve meets the brain, than her actual eye or optic nerve. She sees objects like the rest of us, but her brain doesn’t always interpret for her what it is that she is seeing. (websites on this condition are mentioned at the end of this e-mail) She was evaluated in July at the Anchor Center for Blind Children here in Denver. They are now a part of the integration process into preschool. Because of her vision (and some speech) issues, Ahnya qualified for the Colorado Preschool Program. It is like a Head Start program here in Colorado, which is provided by the school district.
Ahnya turns 3 on September 9! We will be celebrating her life (and recovery) on September 16, 2006. We have reserved our HOA’s clubhouse for the occasion and would like to invite anyone that will be in the area on that day to join us. We’ll have cake, ice cream, and games (including sand volleyball, tennis, basketball). Come anytime between 1p.m. and 5 p.m.
Ahnya has been blessed in many ways, so we are asking that you only bring you and your family. Please no gifts. However, the week of September 25, we as a family will be taking gifts down to The Children's Hospital in honor of Ahnya’s birthday. If you would like to bring a gift for a child on the neurology floor at Children’s Hospital, please bring it to the party and we will deliver it when we go. The only things that the hospital has asked of us, in regards to gifts, is that we don’t forget there are children of all ages (0-18) and that the gifts be new (with tags and original packaging). If you are unable to attend and would still like to send a gift, you may mail it to our house before September 25.
We have been blessed beyond measure by your thoughts, prayers, e-mails, cards, gifts, phone calls, hugs, visits, and dinners. The only thing we will continue to ask for is prayer. We pray Ahnya’s vision will continue to heal, that seizure activity will cease, and that she will thrive in her new learning environment at school!
Please know that we will be forever grateful for your love and support,
The Klosters
Melissa, Jonathan, Olivia, Ahnya, and Elias
Here are some verses from the Bible that have encouraged us through all of this. I will reference most of them, but these are two I wanted to specifically share with you because of their powerful promises –
“’The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.’” Deuteronomy 31:8
“Do not be anxioius about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6,7
Psalm 46:10
Ephesians 2:14
Isaiah 33:2
Psalm 33:20-21
Ephesians 3:16-19
There is a song that continually encouraged us, too. It is Chris Tomlin’s “How Great is Our God.” KLOVE happened to play it EVERY time I left the hospital…it was unbelievable.
