Things continue to trek along...

I am a little discouraged lately with the insurance struggles and Bruce's lack of a job. I am working hard to stay upbeat, but it has been harder then usual.

Medic​aid will not pay Alex's insurance premiums any longer...De​spite a fabulous letter from Bruce's previous employer and a follow up phone call. (Thank you Tammy- We really appreciate the effort!) The federal goverment has mandated that they not cover private insurance policies. (Don't even get me started on this!). At this point we are desperate for Bruce to find a job with good insurance.

On a positive note, Alex's reading is improving daily. He amazes me with the words and sentences he is reading now. He just loves to learn and is so proud of himself when he does well. We are already discussing what curriculum we will use next year and getting excited.

Ale​x's labs yesterday were not very good. His liver numbers have tripled from 2 weeks ago. We are waiting to hear back from the doctors on what if anything we need to do. We continue to pray and believe that Alex will stay healthy and home through the holidays!

Th​ank you to all of you who continue to encourage us in so many ways. Through your friendship, support, kind words and selfless deeds. They truly are what keep me going some days! (Well that and a little angel with a smile that lights up our lives) We hope someday we can repay the kindness that has been shown to us.

Ali

Where did a week go???? I was sure I had just updated!

As most of you know, I am 100% extrovert. I am a people person and love to stay busy. So much so that Alex's first trip to the zoo was before he was 2 months old and he flew on an airplane the first time as a 5 week old. I have had to come to terms with not being able to be out as much since we have known the extent of Alex's illness. So it is surprising I would feel this way, BUT after the year we had last year, I am the loving the quiet, boring monotony of life these days. Because of flu season we are pretty much stranded at home, but we are SO happy to be home and not in the hospital!

Al​ex has started his hibernation! We have noticed a very clear pattern over the last few years. When it gets cold, Alex's energy levels definitely struggle and he sleeps even more then usual. So right now with the frigid temperature​s in Texas, Alex is sleeping his life away. He is sleeping in till about 8 every morning. Is back asllep by 1 and I am waking him up at 5:30 every evening to massive protests and back to sleep at 9 for the night. Don't we all wish we could follow his schedule! It does make it easier for me to do all the extra stuff to prepare for Christmas!

O​n the medical front we got good news this week! We finally received the report from Alex's sleep study. It looks pretty good. See above paragraph...​we always knew the kid could sleep! We also did new evaluations for both OT and PT. There were really know surprises. The only bummer was that Alex's hand strength is even worse then I thought.

We ask for continued prayers for Buggy's health as we approach Christmas, as well as for Bruce's job search and our insurance concerns.

Happy Holidays,
Al​i

We had snow today!!!! This is the second time we have had snow since Alex was born. He was so excited! We were outside before 9:00 this morning. I had a good chuckle before we went out. As we were getting ready, Alex said, " Mommy you know you have to make me hot cocoa to smell when we come in". Could there be anyone more upbeat in the world then our Buggy? He always finds a way to be so "normal" in spite of his circumstanc​es. We didn't last too long as Bug doesn't regulate his temperature very well, but we had fun while we were out!

Monday was lab day. Alex's labs were not as great as last time, but they were ok. All his liver numbers were elevated again and his clotting numbers were up, but overall no surprises. Today we gave our first dose of Vitamin K at home. It is a shot. So yet one more time I have to stick and torture my baby. He is such a trooper. He was very excited after we gave it to discover that Vitamin K does not burn like his procrit. So in Alex's words...."T​hat didn't hurt at all!"

We are getting back in the swing of school. I am constantly amazed by Alex's thirst for knowledge and his unbelievabl​e ability to soak up so much. He really enjoys learning and loves to be praised for his hard work and accomplishm​ents. He continues to love, reading and math and LOVES his computer. He can navigate his computer better then some adults I know.

As for our insurance situation... Bruce's old employer has graciously written a letter trying to clarify the policy and help us get medicaid to continue to cover our premiums. We are so thankful for their love and support. Please continue to pray that this situation resolves itself.

We also ask for continued prayers for bruce to find a good job quickly! After a year of unemploymen​t we are in need of steady income.

We pray that during this holiday season each of you knows the blessing and treasure you have been in our lives.
Ali