Some good, some bad this week...

On a good note: I have Alex's feedings up to half the rate they used to be. For 2 weeks I couldn't get them past, one fifth the usual rate. And we are back to full strength formula instead of cutting it with sugar water. He is starting to gain back some of the weight he lost.

We also LOVE the stroller. We are so happy with it. It would have been really upsetting to spend that much money and then not be crazy about it so we are glad to like it so much.

We only have 2 weeks until our appt with the mito specialist. I am anxious to gt this moving along!

Now for the bad:

Alex's therapist (who most of you know we LOVE) is leaving his therapy center. She is going to a new center, but it is private pay. We are talking to Elizabeth and trying to decide what to do. Her and Alex have a great relationshi​p and he has come so far with her. Besides, I really like her too!

Still no word on the medicaid program. I am hoping to hear soon. I could really use the financial and time break right now!

Thanks for all your prayers and support.

Ali

I think I confused some people with my last post! I forget sometimes that not everyone researches medical stuff everyday! There are over 100 mitochondri​al disorders. They only have DNA testing for the most severe/been around the longest. Alex doesn't have one of those. He most likely still has a mito disorder. However, they wouldn't talk about/sched​ule the muscle biopsy until the DNA results were back.

Alex is finally starting to seem more like himself. After 2 weeks of being fussy, wanting to just lie around, watch tv and sleep. The last two days he is back to playing and acting like himself. After talking to a couple of other Moms, it seems like a lot of these kids were having trouble handling the cold weather. The way one of the more experienced Moms explained it, is that where "normal" bodies just regulate our temperature without much issue, for kids like Alex it is really hard on there bodies to keep temps in the right range so it takes what little energy he has to keep warm instead of playing, etc. Hopefully, that makes sense.

I wanted to thank everyone for your continued prayers and support. They really do keep me going on the hard days.

Most especially I want to thank my "sisters" on this journey-Mar​iah and Janette. Without you guys I don't know where I would be. Thank you for always being there to share my laughter, my fears and most especially my tears. God brought us into each others life so we could support each other when no one else could. It is so nice to know I have you to call and not explain how I feel you just know. I love you girls more then you know.

Ali

DNA testing is normal! Which is what we expected. It tested for 7 of the most severe Mitochondri​al disorders. (Kids with strokes, seizures, significant cognitive delays, etc)

At least we can move on now.

Good News today!

We picked up Alex's stroller. We haven't had a chance to really play with it because Alex slept for four and a half hours this afternoon. But we are hoping to go for a walk tomorrow or Saturday. On the short walk to the car Alex exclaimed "I love my new stroller".

We also got our appt with the mitochondri​al specialist moved up to February 15th. We are very excited to hear what she has to say.

Alex is still not acting quite right. He has been having a really hard time with his belly. We can not get his feedings to where they were and if we try and increase it at all he cries and starts gagging and throwing up. he is also sleeping a ton. Please pray that he doesn't get any worse and we can figure out what is going on.

Ali

Alex and I are still struggling along. I am on another round of antibiotics to try and kick this bronchitis/​sinus infection. Alex is still not acting like himself and his temp dropped into the low 95's today. We are not really sure what is causing this. He isn't wanting to play or do anything except watch TV. Hopefully, he is going to turn the corner soon.

His stroller is in! We will get it on Thursday. I am very excited.

I'l​l keep you updated.

Ali

We are slowly trudging along...

We saw Dr. Benzick yesterday. He wants us to keep doping what we're doing. So we are still on continuous feeds and checking Alex's blood sugars and temperature​s a few times a day. The poor thing fell asleep sitting up yesterday and slept for 5 hours!

The case manager and nurse came by to evaluate Alex. He slept and I answered a bunch of questions. They felt pretty confident that we will qualify so that was good news.

Today, we went to the Ft. Worth Stock Show with friends. It was really cold, but we had a good time. We got to see lots of animals and feed goats and llamas. He seemed a little better today so hopefully he'll keep getting better each day.

Ali

I made the mistake last night of going to the pediatric urgent care instead of the ER. NEVER AGAIN!!

They were awful. They basically didn't do or tell me anything. They were giving me instruction​s on how to bring down a fever despite his temp being 95! We have an appt with Dr. Benzick this morning. We'll see what he has to say.

We also have our appt this afternoon for the medicaid program.

Ali

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

Great News! The stroller was approved by insurance! We still need to pay for most of it because we have to meet our deductible, but we are just happy to have a positive answer!

Than​ks for all your prayers.

Ali

Do you want the good news or the bad news...

Okay good news. We got an appt with the specialist in Houston for March 7th, but she will start correspondi​ng with us and Dr. Benzick as soon as we send her our medical records. Her office was super nice when I talked to them. So I am very excited!

Bad news. I have a sinus infection that is turning into bronchitis. I don't feel bad other then my chest is killing me. If I didn't have to breathe or talk, I would be great! So I am starting antibiotics and increasing all my asthma meds. I am just keeping my fingers crossed that Alex doesn't get sick.

Best news- Mimi and PopPop get here in the morning. We can't wait!

Ali

I hope everyone had a very Merry Christmas and a Happy New Year!

We had a wonderful Christmas. Alex was so happy. We barely saw him for 2 days as he stayed in his play room enjoying all his new stuff. Santa was very good to all of us. The nicest gift was watching Alex and my Dad enjoy each others company. The last two times we have been with Grandpa, Alex has really loved being with him. It is so nice to see.

I got a beautiful new digital slr camera, so look out you could be bombarded with new pictures of my lovebug!

The last couple weeks have been a real rollercoast​er of emotions. Between trying to get the stroller and waiting to hear from Cincinnati, my patience has definitely been tried. Things are really staring to look up though. After much pursuing it looks like the stroller is before the review board right now and we should know something in the next week to 10 days. Then it will take about 2 weeks to get the stroller once the order is placed. I also heard from the neurology department at Cincinnati (finally)! They are still waiting on the DNA tests to come back. They do not want to make a commitment to doing the muscle biopsy without seeing the DNA results. Reason being that if the DNA test is positive we won't need to do the muscle biopsy. The nurse was working on tracking down the results and then will get back with me. The bloodwork that they do have back all points to a metabolic/m​itochondria​l disorder. So at least we know we may be close to finally having some answers.

Ano​ther positive...​through some parents online, I got the name of a mitochondri​al specialist in Houston who is supposedly WONDERFUL. The parents have all been raving about her. It will be really nice to have someone within driving distance to walk us through this. She is also great about communicati​ng by phone and email. We will still use Dr. Putnam for our GI stuff in Cincinnati, but we are hoping to only have to travel once or twice a year. As I learn more I will continue to update.

Than​k you for the blessing you all are in our lives.

Love always,

Ali