Why?

Why start this blog? Well, my family and I are in the middle of a constant crisis that has been brewing for the last 3.5 years. It all started when we decided to have another baby. Instead of one baby we were blessed with two! A twin pregnancy, for my wife, was difficult. We nearly lost them very early on, then again around 21 weeks. But with good medical intervention she kept them safe until 35 weeks 5 days. Both were born small but healthy via c-section. Baby A (Jocelyn) had to return to the nic-u for a week due to feeding problems while baby B (Adelyn) rocked eating. Once everyone was home our family of 5, we have an older daughter- Devanne, settled in to a new routine. Fast forward 7 months...Hands down scariest moment of my life. Adey just seemed off, we took her temp- it was 100.3. Her body stiffened, she just starred in to space and turned blue. My wife called 9-1-1 while I administered CPR. EMTs arrived, her O2 stats showed 65%- my wife jumped into the ambulance with our precious daughter-they raced to the nearest hospital. By the time I arrived at the hospital there were literally 20 doctors in her room. She wasn't blue anymore but she was not responsive. They were poking her left and right-she didn't move. They gave her a cocktail of medication. Doctors explained she had had a seizure, likely a complex febrile seizure. She was stabilized and we were transferred to the local children's hospital. We were there for a week while they tried to figure out what was the cause of the fever. Turns out baby girl had a UTI. Turns out she had kidney reflux and would need to be put on daily dose of antibiotics to keep her from getting constant UTIs. She was also given a short term prescription for medication to prevent seizures. Then she had another "complex febrile seizure" and was placed on long term medication- Keppra. When we returned home our precious daughter lost some of her developmental milestones. She seemed fussier, irritable and wasn't hitting the markers. At 13 months the doctors told us she didn't have a seizure disorder- just complex febrile seizures. Given that we thought "what the hell is she doing on seizure medication if she doesn't have a seizure disorder!" When she ran out of her medication we didn't refill it. I mean, she didn't have a seizure disorder, so...well that was a WRONG choice. She began having myoclonic seizures in clusters of say 20 or 25. We spend the weekend going to the ER because it wasn't right, but the doctors still didn't think she had a seizure disorder. We finally planted ourselves in the Children's Hospital ER. We weren't going to leave until we had a video EEG and an answer. We eventually got that and they were able to capture her seizure events. She did have myoclonic epilepsy. We weren't crazy. Fast forward 2 and a half years. We have had 4 sets of ear tubes, adenoids taken out, more complex febrile seizures but never have seen myoclonic seizure since 13 months. Adey is severely delayed; recently she has started to have facial drooping which can't be explained. She has sensory issues, very little speech, motor delays, blah, blah, blah. We are currently waiting for testing to come back to see if she has a form of mitochondrial disease. We were devastated when doctors, during out last hospital stay, felt strongly that she needed to be tested because there seemed to be nothing else to explain her global developmental delays and other medical problems. We had to get our neurologist to order it and then it took WEEKS for insurance to approve the request. But, given what I have read about others, our 6 week wait was nothing, so thank God it happened that quickly. We were devastated at that possible diagnosis because we read about it on Google. You see my wife goggles everything in life. Granted, in reality 1 out of 4000 children have a mito disease; there is a spectrum of disorders which range in severity. But as anxious parents and Google highlighting the worst of the worst- all my wife did was sob for days. I pray, if she does have a form of this that it is a lesser form. We are waiting for the test to come back, 3 weeks 4 days until we might get the results. The amazing thing is that everyone around her picks up on her sweet personality, her caring nature and lovable smile. She has red hair, which EVERYONE comments on. I mean EVERYONE. People often tell me there is just something about her, something special in her eyes. We see it too. But all of that isn't why I feel it is absolutely necessary to write this blog...To some this next part will make me sound like a crazy person (I know because I work with people who have mental health issues). To others, they will see it as a testimony of the amazing work God does. I was sitting in church recently and a profound feeling enveloped me. I had a thought/I heard a voice telling me that our family needed to drastically change our eating habits. I was sure if I told my wife this she would consider me in the crazy category. But I approached her with my experience. Usually when I bring crazy sounding ideas to the table she lets me know. But she sat with this for a while. We discussed it, what eating habits we would change and both felt equally invested in going Gluten Free. Adey has many of the symptoms of gluten intolerance and gluten ataxia and we had previously gone off dairy with no change. We started a two week GF diet for the family. We saw immediate results for Adey. Not just us, but her pre-school teachers noticed her energy level go way up, sleep at night was much better, skin improved and she was talking up a storm. The only way to know for sure if GF was the cause of all these changes was to introduce gluten back into the system. We headed to red robin and gave it a go. This was a very, very bad idea. The next day she woke up with a 104 degree temp, cranky, tired, distended belly for NO apparent reason. Doctor confirmed no ear infection or UTI. The doctor thought it could be related to gluten, but wasn't convinced. Jessica and I both knew the Gluten was attacking her body. Historically her body has a way with over doing it in relation to reactions. When she gets sick, she gets SICK. A simple cold can bring on a 2 or 3 day hospital stay. This re-introduction of gluten caused a trip to the ER in an ambulance, 2 IV bags of fluids and blood work. ER told us she has a virus. It also happened that Jessica had a crazy bad headache the day after eating gluten and tummy problems. Today my wife took Adey to her biannual neurology appointment. This was her summary of the appointment: So... I walk into this doctors appt with a paper filled with notes ready for the doctor who I find to be more than annoying and downright snobby to tell me that im basically a kook. He walks in and tells me that he’s sorry he’s late, he’s just trying to get caught up on all that is going on with her and before he could in...terrupt me, I go into an entire speal regarding gluten free diet and all her symptoms. He stares at me. When im finally done, im almost crying because im just sure he’s going to roll his eyes. He looks at me and says that I have more tenacity than he has ever seen before and that he admires all the intelligent research I do. He goes on to say that he had only had one medical nutrition class his entire career (this is one of the top neurologists in the state) and he has talked to hundreds of peds, gi specialists, and fellow neurologists who know nothing of gluten insensitivities and that’s about to change... with me and Adey. He’s 100% on board with going gluten free. He still believes she has a mitochondrial energy problem but it can be cured with her diet. He mentions that she has had completely normal eeg and mris... he wants to wait 6 months for all the gluten to leave her body AND THEN WEAN HER OFF HER MEDS! Lastly, he is inviting me to his annual grand rounds with.neurologists and doctors from over the states to talk about our case. I cant stop crying. I cant start processing all the emotions I have right now. But for the first time, I look back at my baby in her car seat and I have 100% confidence that she’s going to be alright and that my friends, is what I wanted a chance to have since she was 7 months old. We have to get the word out about this, I KNOW there are other families out there who are struggling. I also know that going gluten free wont solve all of our problems, but I know that taking a very careful look at what we put in our bodies can only help. So this blog will be about our lives, our family. What we do, what we don't do. In the kitchen and out. Welcome to the crazy moments I call life.