Mr. Schloss' Job and Ketogenic Diet

After speaking with a close friend this week who lives far away, and is kind enough to read my blog I realized that I have not put any updates of some major life events in our home.  Mostly this is due to time constraints, and my attempt to balance something that is very unbalanced.  I try not to spend much time on the computer. We have a house full of people here at Schloss Casa that require much of my attention.

On to it then: Mr. Schloss's Job or should I say Lieutenant Schloss' Job.
Mike is now a Lieutenant in the Navy Reserves.  He separated from the Marine Corp this past summer with the intent of doing an inter-service transfer to the Navy reserves.  I am so thankful to the Lord for the time we had to plan and prepare for this transition as we knew it would mean at least 40 days of unemployment.  And in typical military fashion, it took way longer than expected.  Mike was unemployed for 6 months. He started checking in with the Navy in December.  For the first couple months he has been able to secure "active duty" status with the reserves, which is a blessing finically for us as he considers and looks for jobs he can do along side or with-in the reserves. Thank you for your prayers!

On to other big news....... we paid off or mortgage!!! So this reduces our monthly bills significantly. Pretty exciting!

Aggie has been on the Ketogenic diet for 6 months now.  It is the only treatment that is being tested for her diagnosis.  Her diagnosis is Pyruvate Dehydrogenase Complex Deficiency (PCDC). It is a metabolic disorder and mitochondrial disease. Her body is unable to use carbohydrates for energy. Instead of making energy it would make lactic acid, which would accumulate in her blood and cause damage to her brain.  Which is why her brain is already abnormal. The diet is, in theory, suppose to slow this process down. It trains her body to use fat for energy instead of carbs.  I have been thankful to see the diet has benefited her in some great ways in this short time; proper weight gain, increased energy, are two big ones.  She still gets crabby, and can be difficult to manage, but the incidences have decreased. She naps less because she has more energy.  Her main source of nutrition is a formula called Keto-cal designed specifically for children on this diet. It tastes like melted ice cream and Salem would be thrilled if it was what we put in her cup, as we often find her confiscating Aggie's cup. I do continue to make and weight out grams of food for recipes and meals for Aggie. We are in more of a groove now with that and have found some of Aggie's favorite things to eat.  One thing that has been disappointing for me is Aggie's lack of desire to eat. She does not eat much or often. I have had to relinquish my desire for her to be "normal" in this area as well, as it may never be part of her life. Eating is more a form of entertainment for her and her ability to consume enough to meet her nutritional needs is not there.  She loves to eat ice chips, which she is allowed in unlimited proportions. She requests it often.  One negative side effect of the diet is constipation, and we have worked out some kinks with that. We now use MCT oil as part of her evening meal to keep her regular, which works most of the time. Occasionally medicinal intervention is necessary. One other large risk of the diet is kidney stones. We have no reason to think she has those and have been running water through her feeding tube during nap time in an attempt to prevent them.  We still run the feeding pump at night most nights which generally complets it's feeding at 2:00 a.m. and I tend to it. She is suppose to drink 20 ounces of formula in a 24 hour period, so what she doesn't drink in the day she gets at night. All in all we are seeing that the diet is affecting her positively and plan to stick with it as long as it suits us.  It is some extra work for both Mike and I. Mike compounds(crushes) all her supplements that she receives twice daily, so that they are carb free and can be given with liquid though her tube. Any additional medicine she needs I crush and weigh on a milligram scale so it is an accurate dose for her weight.  Thankfully this is only occasionally that she has need for this.  The diet has been good exercise for my brain.  I have been re-acquinted with some intense algebra, could probably eyeball what 15 grams of butter or banana is, and have tried my hand a pharmaceuticals.  We are thankful for God's grace to do what He as called us to in this difficult season of life.