Excuse me, what did you say? Pt. 3

"This may be your new normal at least for the next few years." 

The new normal. That is a phrase that we throw around a lot here now. These words, originally received in an email from Natalie's specialist, came to us when we were on day 7 of our 9 day hospital stay in July.

I remember reading that and literally feeling all of the air leaving my body. What does he mean "this may be your new normal"? That we will be in the hospital like this all the time? And can we define a few years?

When we asked for clarification, the answer we received was "Everyone is different." In his vagueness, he was also at his most honest. In his bluntness, he was being real. I appreciate this. I also didn't know what to do with it. The reason for this "new normal" was the onset of puberty. It came with a bang and threw Natalie's body into a tailspin.

Keep in mind, that we were on day 6 of being in a hospital room with our daughter with ZERO improvement. She was not eating, was on a continuous IV, and we had to sit there 24 hours a day with the shade drawn, TV on the lowest volume possible, and no lights. She also could not sit upright for more than a couple minutes at a time without her headache or nausea spiking. She basically laid there all day.  So, when we heard "new normal", we were a little taken aback.  The reason for this "new normal" was the onset of puberty. It came with a bang and threw Natalie's body into a tailspin.

When the nausea and fatigue started almost a couple of years ago, it was rough. In second grade, she missed a ton of school. After we started working with Dr. Boles, everything changed and our daughter got her life back. We started her on the "mito cocktail" of vitamins, enzymes, and supplements. This combined with keeping a good sleep schedule and diet had her doing so well. We also had hooked her up with a fantastic therapist who has a doctorate and specializes in children with chronic medical conditions. She was/is A-MAZ-ING and helped Natalie work through all of the fears and feelings that came with her condition. If a situation arose, we knew how to handle it. She barely missed school and third grade was great until the very end. Toward the end, Natalie had the first episode of cyclic vomiting after almost 7 months. At first, we thought it was a fluke. But then, more problems started to come. She had a couple more episodes in the beginning of June, but with them came migraine type headaches which she had never previously had. We were able to resolve them at home and started to discuss this with Dr. Boles. Then came July when everything changed. The "new normal" began and culminated in the "mother of all episodes" which resulted in her being transported to the ER and admitted for 9 days.

Since discharge, she has been on a new medicine to keep her episodes under control (which took a month to kick all the way in) and was provided with migraine medicines which we refer to as "the big guns" (for use when we can't get ahead of the headache with Tylenol/Motrin). She also has been a big ol' mess of random symptoms. She has still had migraines, but we have been able to get them under control with either the Tylenol/Motrin/Zofran combo or "the big guns'.  Before and during the migraines, she sees all different kind of spots and lines. She also has had rapid onset of skin mottling, tingling and/or weakness in her limbs, and overall shakiness. With one of the migraines, one arm went numb in the elbow area, while the other arm felt as if IV fluid similar to saline was flowing through it. She has had joint and limb pain. Another major new symptom is a shallow breathing issue which does not present any danger, but scares the heck out of her. She also has had a tremendous amount of fatigue missing one day of school per week (except for the one week we made it all the way through!) and having to pretty much rest up on the weekends. The heat has been horrible for her and takes way too much of a toll on her body so she has been spending recesses inside and forgoing PE for right now.

Our biggest challenge currently is playing "beat the clock" each time a migraine episode comes on so we don't end up back at the hospital AND trying to learn how to navigate with this "new normal" that is unclear, unpredictable, and frankly, all over the place. Mitochondrial Disease can affect any part of your body and new symptoms are popping up with her constantly. It is so difficult to know when a new issue is cause for concern or not. We are learning as we go, and having to ask a lot of questions. Praise God for Dr. Boles. For Real. He is a gift.

We do not make plans. We have ideas. We have learned that we really do have to live moment by moment, and just remember to breathe. We thank God for our daughter and all we are learning from this. I know God has a plan, but I have to admit that I regularly ask him to re-evaluate this particular plan. After all, it is definitely not my favorite.

Natalie's biggest challenge is trying to adapt to the reality that no two days are ever the same with her body, and that her internal situation can change without warning. Most of her symptoms are benign, but that doesn't mean they aren't scary or limiting. Her body regularly betrays her, as she has to miss out on many events and activities she would like to be a part of. She's understandably frustrated and scared.

Tonight was one of those bummer nights for her. She missed school today because she is fighting a cold virus, which for her means her body has been haywire for days. She, for the 5th day in a row, started seeing the spots and lines and had an elevated headache. When it was clear  that the headache and nausea were rapidly rising this evening, we pulled out the "big guns". Even with those on board, her nausea was unbearable and the headache was not any better. She had to lay very still in order to prevent the headache and nausea from rising any further. After about an hour and a half of this, she fell asleep. Her other random special symptom of the day was a feeling of tightness in her fingers and toes. I don't know what that was all about, but then again, I rarely do.

We are hoping that as the heat subsides, things will improve somewhat. But as that comes, so does cold and flu season, which brings a whole new set of issues. This kid + illness = BIG HOT MESS. According to her local neurologist, our goal is simply to "stay out of the hospital". So far, we are succeeding. Dr. Boles has made it very clear that we don't really know how many hospital stays we will be facing over the next few years. I think it would be swell if it was zero. I know that is not likely, but a girl can hope.