Dr. Garg Consult

Dr. Garg just left and I have one word.... Amazing! He was so thorough and had the most sensitive bedside manner. He made Allorah feel comfortable and at ease and that is very important to me. His evaluation showed the typical sign of lipodystrophy and an enlarged liver. She will have the MRI of her liver tomorrow to see how much damage is there. She had photographs today to document the signs of the disease as well. She will have skin folds calculated tomorrow too. Most of her labs will be back tomorrow and Dr. Garg will be able to tell what's the damage. So I believe we are done for today and will be heading to dinner and to take the girls to the movies.

Day 1 at UT Southwestern

Today has started for Lola already. We checked in yesterday evening and went to dinner at Maggianos where we all enjoyed a nice evening. We checked back into our luscious suite here at Le Resort UTSW and got settled in. It's nice because we are able to leave the facility and she isn't just stuck here.
This morning, bright and early, we got her up for vitals and weight. The nurse, Claudia, came in a moment ago and started her IV and got blood work from her. She had to start a glucose tolerance test this morning so if any of you all have had one, then you know how horribly sweet that juice is. Lola actually liked it and chugged it like a champ, the nurse was amazed. About 10 minutes later, Lola wasn't feeling so hot and said she was nauseous, so I explained to her that it's normal and to try and go back to sleep. She did and is passed out! The nurse just came back in for another blood draw and she didn't even wake up. Dr. Garg is in clinic today and will come by after clinic to see her. She is scheduled for an MRI of her liver this afternoon. I will be checking in later with more info as soon as I hear anything.

On The Road Again

It was bright and early when we hit the road today. We are Dallas bound and praying we get some answers for Lola. We check into UT Southwestern tonight around 6 and testing will start. Please send your prayers and good vibes to Allorah. Please check back for updates and pictured from the road.

Schools Out!

I cannot believe that another school year has come to a close. I offically have a senior in high school and a 7th grader! Wow! I can say that I officially feel old! The wrinkles and grey hair that I sport are evidence that its true! It will be a very busy summer for my family. We will be leaving for Dallas on Monday morning for a week, then heading to Chicago on June 16th for Allorahs surgery the following day and then her appointment with Dr. Pachman on the the 20th. Then Jo got a car and we will be bringing that home and working on that for her, preparing the house so I can rent it out, packing and cleaning and then moving up north and getting situated up there, then finishing up the summer with a trip to Vegas in September to tie the knot! It will be a hectic one for us thats for sure. Hardly enough time to relax.

Relax

It was a nice weekend of relaxing for me. After the emotional rollercoaster the last 2 weeks, I needed to just relax this weekend and regroup. So off to Espanola I went. We were invited to 2 parties on Saturday, a graduation party at Black Mesa golf course for a friend and colleague of Nathans and then to a dinner party at Rancho de Chimayo for the promotion of one of his bosses. Both parties were nice and we had an amazing time.


Nathan and I at Black Mesa Gold Course

 For the first time in my life, I bowled on Saturday. Yup, thats right, you heard me, I BOWLED! And not by choice! It wasnt bad, but I totally had to face my fear head on and put on shoes that did not belong to me!! I wasnt happy about it, but the 2 cheladas I drank helped with the anxiety I was having!


Nice, huh?

 It was a beautiful weekend. We even went to Abiqui lake on Saturday and then I met a good friend for breakfast in Santa Fe on Sunday morning on the way home. It was what I needed to be able to refresh, regroup and focus on next week.

Good news!

It's good news!! Allorahs glucose and A1C are better so they aren't going to start her on insulin as they initially thought. Dr. Kaufman thinks we can control it with diet alone. I had already initiated a strict sugar free and low carb diet as soon as we found out and that was enough to bring her numbers down. I am so excited and thrilled. Allorah has to check her glucose 3 to 4 times a day and keep a close log and then we will go to Dallas to see Dr. Garg and see if she is a candidate for the Leptin treatment. Dr. Pachman also said we can try and lower her Presnisone from 10 mg. To 9 mg. This will help with the diabetes. So our next step is Dallas. This diet will be difficult for Lola since her diet is so restricted already with it being gluten free so now it's that and low fat, low carb and no sugar! If you have any recipe ideas please send my way! Thank you all for your prayers.

On the road...

We are heading out this morning to go see Dr. Kaufman in Albuquerque to see what the first plan of action will be. We are all on edge and nervous. Allorahs stomach is in knots and I have tried to get her to relax. Easier said than done. We will see the diabetic educator as well.
I did hear back from the nurse of Dr. Garg, the metabolic disease specialist in Dallas, and it looks like we will be heading out to UT Southwestern on Memorial day and staying there until the 5th. We just want answers about this new condition. There's not much I know about it. Please say a prayer for Allorah today, as she is scared, as am I.