Quick update:

Plea​se say a prayer...We are leaving for the ER. Alex woke up after a 4 hour nap and was extremely fussy. When we checked his blood sugar it was higher then normal. More concerning his tempaeratur​e was down in the 95's. So Dr. Benzick is sending us in. I will (or have Bruce) update when I know more.

Ali

Alex is having a rough few days. He woke up Sunday Morning with a fever. He has been sneezing and coughing, but nothing major. Well Sunday he started complaining of his belly hurting. I switched to 1/2 strength formula and did a slow continuous drip all day. Yesterday, we were afraid he was getting dehydrated so after talking to the nurse at Dr. Benzick's we switched to just homemade pedialyte. he was tired, but seemed to be doing okay. This morning, I tried to go back to his normal feeding schedule, but with the 1/2 strength formula. Less then 5 minutes after hooking him up he started gagging and threw up. So we are back to a slow continuous drip. I am a little on edge, because I am not sure how long he can tolerate this without dehydration​/blood sugar issues. Please pray for me to have the guidance to make the right decisions. It is so hard to always have the responsibil​ity to make all the decisions.

T​hanks for your support,

Ali

Hope everyone is enjoying the new year. The first two weeks of January, lots of stuff started coming through all at once.

1. Alex's stroller should be here in the next week or two.

2. Alex's therapist, Elizabeth, had ordered him a special tricycle. We should also have that in about 2 weeks. It is being donated by an organizatio​n, so that is a blessing.

3. Many of you know that we have been trying to get into a program in TX called the Medically Dependent Children's Program. The main reason we have been trying is because it gets us Medicaid as a secondary insurance. But it will also provide nursing care so I can get a break a few hours a week. There is normally a 2yr wait, but a social worker had told us a way to move the process along. The ball has started rolling on this. We have someone coming to the house on Thursday to see Alex and make sure he really has "issues". Once they okay us. I will have to fill out paperwork, as will Dr. Benzick. Then Alex and I will spend a night in a nursing home. They will discharge us 24 hours later and we will be all set. Services start within 48 hours of discharge.

4. We have an appt with the Neurologist who specializes in Mitochondri​al disorders in Houston on March 7th. The contact I have already had with them has been wonderful.

5. We have our next trip to Cincinnati planned. Our endoscopy is scheduled for March 31st. We will followup with Dr. DeGrauw (the neurologist​) and Dr. Putnam on April 3rd. I have told Bruce he better start travelling and earning more points. I am hoping to get another free hotel stay this trip!

I think that catches you up. As for fun stuff, Alex had a blast with Mimi and PopPop. It is always so nice to have family around. We spent a day at the stockyards and then Mimi got a chance to see all the parts of Alex's life, from meeting friends to dr's appts and therapy. Other then that we have played with friends a few times and have started walking with our friends on Thursday. (Well Mommy walks, Alex rides!)

Plea​se keep us in your prayers. I cannot kick this bronchitis and Alex has been sneezing/co​ughing more each day. I am really scared for him to get sick. I dread another trip to the emergency room. One of the things I have been told is that we need to be really aggressive in treatment if Alex gets sick. Kids with Mitochondri​al Disorders or metabolic disorders bodies don't handle the stress of being sick very well. So that means getting IV rehydration and treatment sooner then most kids will. So anyway, pray for Alex to stay healthy.

Tha​nks for surrounding us will love as we forge ahead on this crazy rollercoast​er of a journey.

Lov​e,

Ali