United Front

God truly works in mysterious ways. The onset of the ketogenic diet was nothing I could have ever imagined... I had no idea what an abrupt life change this would be and also that it is impossible to do alone. Izabelle has still been refusing to take medicine( new form since keto )from me and others I have had at the house since last Saturday night. On Wednesday, Izabelle refused to take her morning medications before school from myself and a good friend. Our back up plan was to have the school nurse give Izabelle her meds at school. While teaching fifth grade art in my classroom I received a phone call from her school. Izabelle had refused her medication from the school nurse even with incentives such as visiting good friends and a prize box. I left as soon as I could and set up a plan with Izabelle's other half (her dad and step mom) so they could give her the medication for me. We met in a parking lot half way and they administered it with less struggle then I have been facing. Izabelle and I returned home. I was on the phone with her step mother when Izabelle began to go in and out of seizures... Until she froze and wouldn't come out of it. I had to administer diastat. She didn't come back right away so I called 911 for back up. I had no idea that missing a medication by four hours would create a 25 minute seizure. Izabelle came to before the ambulance arrived. They checked her out and stayed until I could locate a back up Diastat for later. I brought Izabelle to her Dad that night. On Thursday, Izabelle refused again. I broke down crying and knew that at least for now it was best if she stayed at her fathers where she would be assured to get her medications on time at least until our next appointment on Monday. 

It is so hard to be in this place right now. I think Izabelle associates me with the trauma from the hospital stay and almost blames me for her life turning upside down. My eyes have been peeled wide open. She behaves so much better at her Dads house. I also think that two parents are definitely better then one at this point. I've been too emotionally drained by all of these med changes and now the diet trial. I'm working to recharge and take on this challenge. Tomorrow morning I'm going to show up at Izabelle's Dads house and start a slow process of reintroducing Izabelle to taking her medication from me gradually with the support of both her father and step mom. I never thought anything like this would ever happen. Just trying to stay positive and remember how hard I have fought to get Izabelle where she is today. In a way I have held on so tight and plowed through, biting my lip through all of this on my own. It's nice to have help from Izabelle's other parents. Three is better then one. We are uniting for the sake of our child and I'm beginning to think this is what she has needed all along. 

It takes a Village

This has been the most trying week... I don't have correct adjectives to describe all the emotions I have been feeling. I have had to submit to the fact that there is no humanly possible way for me to do this all on my own. This week all sides collided to give Izabelle the care she needs... Myself, her father and her step mother are just beginning to work together to provide what Izabelle needs as a united front. There is no way this diet is going to work without all of us pulling together. She is what's important. Her needs her health her betterment. This diet is such a risk and isn't easy in the least. As soon as we got home power struggles commensed over things that once were easy. It's been madness.

 I started to loose myself...forgetting to put my own oxygen mask on first. Not eating, sleeping or doing things that make me feel whole and complete. I had to ask for help and let go of my ego. At the end of the day I know that my daughter is loved and that I have done everything in my power to ensure her health and safety. It takes a village. 

She's a CHAMP!!!

Izabelle has made it through the first two days at the hospital like a champ. Her father and I took our first class in the diet yesterday and began to prepare meals for her at lunch. So far Izabelle has eaten all the food presented to her. She hasn't even asked for snacks or more food! Medication administration is still the biggest challenge but I'm working out the kinks. Her body is very close to being in ketosis which is the goal. She has had to take blood and urine tests daily but she amazes me with her bravery. The diet will prove to be a challenge as it is so restrictive down to brand names and measurement. Thank god I was always great at math!

It is so nice that we are able to leave our room frequently. Izabelle is making friends with everyone! 

Ready for bed...

We arrived at Boston Children's today 50 minutes late for our 1oclock admission for the ketogenic diet inpatient stay. I think I will arrive late on purpose next time because we didn't get a room until 5pm. Izabelle enjoyed at least two hours on the playground and made new friends as did I.

Izabelle had her first 'egg nog' or keto shake around 6. She loved it. I kept telling her it was just like mommies frappes.

The worst part came when we had to wait until 9:30pm for Izabelle's meds to arrive. Izabelle's medications have to be in dry form now instead of suspensions due to carbs. Our nurse and I thought we would try mixing the medication in fruit 2 o because we didn't have access to a scale for mixing it with apple sauce and butter as the dietitian noted. Izabelle was out of sorts, overtired and when she realized how bitter the medication was she spat it all over us. Our nurse looked mortified as she knew how long it would take to re order the medications. Looking back at it, the mixture must have tasted disgusting in that consentrated form. Luckily the doctor allowed me to use the meds I had on hand and we had success with an unmeasured amount of applesauce. Tomorrow's a new day. She's in bed now and I'll be soon after. 

No breaks on Mother's Day

For almost two weeks now Izabelle underwent a trial for the medication Phenytoin commonly known as Dilantin. There were not serious side effects until Izabelle reached her goal dosing by Saturday of last week. She was reported to have upwards of six seizures last Saturday by her dad. By Monday, Izabelle was complaining of stomach upset and fell asleep during class at school. On Wednesday, after a field trip swimming she fell to the floor holding her stomach in pain. I left work early again and fetched her in Wiscasset. Wednesday afternoon she had two clusters of seizures that lasted 5+ minutes. I almost administered Diastat for the second cluster. By Thursday afternoon Izabelle's neurologist suggested lowering Treleptal to lesson stomach pain. Immediately my mind flashed back a month to side effects of Felbamate and Vimpat. She and I could not handle another debilitating month of crazy seizures, stomach pain and exhaustion. I recommended we step off the new medication as our admission to Boston Children's hospital was fast approaching. We deserve a week of 'normalcy' before our life completely changes... We started the step down Thursday night. Izabelle then went to her Dads for the weekend. 

Mothers Day: 

This morning Izabelle woke to a cluster of seizures lasting 10+minutes. Her father administered Diastat rectally to stop seizures. He called me to let me know what was going on. I called the on call doctor and set up a conference call so he and I could speak to the neurologist directly. Izabelle unlike other patients experiences a direct increase in seizures instead of the opposite when coming off of medications. I told her dad to keep Izabelle laying down and let her sleep it off. We had a conversation in which I started to cry because I wasn't able to be there for her. This is not anything I wish on any parent. It's one thing to send a well child to their dads and an entirely different thing to send a child with a complex health issue away for the weekend. I retrieved Izabelle around 10am this morning and found her well and happy for almost the rest of the day. 

It's 8:58pm and I'm still waiting for her to go to bed because she fell asleep earlier in the evening and woke back up. That saying, 'a mothers work is never done.'... is the damn truth!

*Our next step is the Ketogenic Diet. I am trying to keep my expectations low so I don't get disappointed but I'm so up for the challenge.