I never dreamed when I started this blog that it would turn out to be one medical update after another. After all....I don't go to doctors or take medicine....remember? Remember that, God?? As is always the case, God's ways are not our ways, and as it turns out, we spend a large portion of our time and budget going to doctors and taking medicine. I know God has a purpose in all of this. I surrendered my life to Him many years ago, and in His perfect wisdom, this is where He has me. I don't understand it, but I don't have to. :-)
So....a good bit has happened since my last update, so I am going to just go through each family member and give you an update:
Jeff: Jeff's doctor had no explanation for why he passed out and could give us no precautions to take to keep it from happening again. He is still scheduled to go to a GI specialist, but at this point, we are not really expecting answers. Since his 'episode' on the way to Georgia, he has done really well...no more pain or passing out. That's a really good thing! He is still training every day, and just did his first Sprint Triathlon yesterday. More to come on that.
Alyssa: Alyssa still seems to be healthy...at least physically. I am, however, pretty sure that if something doesn't change soon, her eyes are going to be permanently stuck in the back of her head where she rolls them frequently. She is making friends and having some fun times. More on that to come, as well!
Emilie: It has been challenging trying to get all of her meds regulated, but she is no longer seeing people who aren't there or hearing voices or people trying to kill her. Thankfully, she has not been required to focus on much, since we have not started school yet, but it should be interesting once we do start school. Mentally, however, things do seem to be improving. For the most part, she has been delightful the last few weeks.
Clara: If you are one of my 'friends' on Facebook, you know that we had a rough weekend last weekend. We had just finished #6 of 6 services for Staff Revival Week with Life Action, and when she got into the car, she didn't look 'right'. I don't know how else to explain it, but I am too familiar with that look. However, typically when she looks that way, her blood sugar is low, her ketones are high, and we are headed into a metabolic crash. Her appetite had decreased significantly in the days preceding that, as well, which is usually another indicator. However, when we got home and checked her levels, her ketones were high and so was her glucose level. That was a new one for us, and to be honest, it left me quite baffled. We checked her levels all day, every two hours, and still at bedtime, her levels were high. She was so borderline, though, and we were never really sure if we should take her to the hospital. We never hit the "magic" number, though she came close, and thankfully, she never started throwing up. Had either of these things happened, it would have been a trip straight to the ER. At midnight, we decided to go into the night at home and pray for the best. She did great through the night....slept all the way through, and while she still had no appetite the next morning, her glucose levels and ketones were a little lower. Long story short: we battled her levels all weekend, but when she woke up Monday morning, all levels were normal and she was as hungry as a savage beast! I couldn't get her full!
Her geneticist had no explanation, except that she was concerned that Clara was developing a glucose issue (diabetes) in addition to everything else. We went to the pediatrician Monday afternoon and he felt she needed to see her endocrinologist at the U of M. He also did some blood work (A1C for my friends who know what that means) and her levels came back very much within normal ranges. Praise God! I can't tell you how much I needed that good news. This past Friday, we took another road trip across the state to Ann Arbor to visit with her endocrinologist. This was a very unexpected trip and one we were not financially prepared for. However, God provided in a most unexpected way, and for that, we are truly thankful!
Jehovah Jireh. God, our provider!
In addition to her glucose issues, she has also been having some breathing (air hunger) issues that her pediatrician wanted to have checked, as well. The short of that is: tons and tons of testing, labwork, and examinations and still no answers. We don't have all of the labs back yet, but all of the breathing studies that were done came back normal (thankfully), and we still do not know about the glucose stuff. I'll keep you updated.
Megan: This is a child I never thought I would have to give updates on. She's always been so healthy. I told you about her heart already. The hits keep coming.
Two weeks ago, we were in the midst of a yard sale two weekends in a row right on each end of Revival Week services. We were already exhausted from weeks of going through every single box we have getting rid of stuff, the house
was is a mess, and on Monday morning, Megan tells me her ear hurts. Great. So before we left for services that morning, I called her pediatrician. However, they had no appointments because of some office renovations that were taking place and told us to go to the walk-in clinic.
Let me interject here to tell you that the last time we went to that clinic, we waited for three hours to have the child who was sick seen, and within two days, the rest of the family was very, VERY sick. Needless to say, I am not really keen on that clinic. Besides, it is always best to have your child seen by their own doctor.
So.....I decided to give it 24 hours and see what happened. Sometimes kids get random stuff that resolves itself. The next morning, Tuesday, she woke up and said her ear didn't hurt at all, so I didn't give it another thought....until that Thursday night. I picked her up to give her a squeeze and when I did, I smelled the foulest odor I think I have ever smelled and there was green pus coming out of her ear.
Great.
Once again I called the doctor, but he had no appointments. I went to the walk-in clinic after our Revival services that morning and there was going to be a minimum of three hours to wait. At that point, I was totally exhausted and I had a family at home waiting to eat. I drove her to the clinic in Granger, IN, about 15 minutes away, and finally had her seen. Keep in mind, at this point she had NO fever and NO pain.
Well, the doctor there all but accused me of child abuse. He began interrogating me, and finally, I said, "I am not a negligent mother." He finally quit with the interrogation. He took a culture of the stuff in her ears (which turned out to be a staff infection) and prescribed an antibiotic. He told me I needed to get her to the ENT as quickly as possible before she lost her hearing.
Ummmmm, excuse me....what did you say?? LOSE HER HEARING???!!!
This was the same weekend we were fighting Clara's blood sugar and she went to the same appointment Clara went to the following Monday morning. Her pediatrician added antibiotic drops to her medications and got us in to the ENT the following Wednesday. He said he would be surprised if they didn't want to remove her tonsils and adenoids, because in addition to all of this, she has a ton of trouble breathing when she sleeps, and often snores like a lumberjack.
sigh...
The ENT was concerned about her ear, but felt the medicine was healing it sufficiently. She put her on allergy medication in hopes this would fix the nighttime breathing so we can avoid surgery to remove tonsils and adenoids. She will re-evaluate in four weeks. I told her we would look forward to seeing her again very soon, because Clara failed....miserably failed....her hearing test at the same aforementioned appointment with the pediatrician.
Nice.
Speaking of failed tests, Megan will be visiting a pediatric eye doctor soon. (I can never remember if it is an optometrist or ophthalmologist.) She went to one at Scottish Rite about two years ago and he wanted to see her in two years. He told us that Megan would be near-sighted at a young age (how they can tell that by looking at a two year-old's eyes is beyond me), and two years have passed....plus she failed her vision screening at her check-up a few weeks ago. If you see a picture of her in glasses soon, you'll know the results of that appointment. :-) I do wonder how you keep glasses on a little jumping bean?
Lastly, Me: My head is pretty much swimming. My house is still a wreck from getting ready for the yard sale, and despite getting rid of a TON of stuff, we still have too much for this house. I feel like I just moved in. I guess I can get rid of more, but I don't know what else. Not only is that keeping my mind occupied all the time because the clutter is driving me NUTS, but in a time when I would really love to have someone over for lunch or coffee, just for a much-needed distraction, I am too embarrassed. I am hoping to get organized soon, however, because it is almost time to start school. If you had asked me how I was a week ago, I would have told you I felt like I was about to smother under the pressure, but this week seems to be a little better. We have not had any huge, life-altering news, but all the little stuff is making me crazy. In addition to the yard sale, Revival Week, and sick children, we also had to have all of our entries at the 4-H fair last Sunday. Again, nothing major....just one. more. thing. However, we had a great time at the fair...more on that later. I am sure it would help if I could get back in shape and lose some weight. I went for my yearly physical a few weeks ago and still haven't had time to get the blood work done. I will get that up to the top of my priority list soon, and in the meantime, I have (unfortunately) discovered energy drinks. I am not getting addicted or drinking them excessively, but I have found that when there is more day left than there is energy in my body, they really help, because despite how overwhelmed, exhausted, or frustrated I am, I still have a husband and four girls who need me.
One of the things we talked a lot about at Revival Week was the idea of
abiding and not
achieving. I am pondering that one. I think it is just the thing I need to remember. But again....more on Revival Week later. This update is ridiculously long, as it is!
If you are here at the end with me, THANK YOU! Thank you for your concern, your prayers, and your love for my family. Please keep us in your prayers, as well as other families who are suffering greatly....exponentially more than we are. I have been dreading this update....I don't like to dwell on the negative...but I make every effort to be as honest as possible here. The next post will be HAPPY and in the midst of all of our recent 'yuck', we still have so much for which to be thankful!
Much Love!
Jeannie
