Alex is doing great today. He is off oxygen. His feeds are up to 25 cc's/hour and we are currently getting a blood transfusion.​
We have had a fun day as well. It started with a surprise party for LaKeesha, Dr. Koenig's nurse. Alex was so excited for the party. He hid for 30 minutes before she came.

The other treat is that Erin, an old dear friend of mine flew in this morning to visit for the weekend. We are already having a great time catching up.

Ali

Things continue to improve! We are up to 20 cc's/hour of full stength formula and doing great. Tomorrow is the day we start decreasing his TPN which is a huge milestone. The only concern we have is his blood sugar. Alex has a HUGE amount of dextrose in his TPN. When we start dropping his TPN we will probably see some low blood sugars. So tomorrow we will begin checking his blood sugars every 4 hours.

We still have him on 1 liter of oxygen. Dr. Pacheco doesn't want him using energy trying to keep his saturations up. The decision we came to today was that we would wait till after we transfuse him to wean the oxygen. Hopefully, tomorrow is transfusion day. We are trying to wait as long as possible. Poor baby looks horrible!

Ev​eryone start saying your prayers...I have official word that if everything continues in the right direction we will be discharged Tuesday!!!! It has been a long 3 months, but the end is in sight. My bed is calling!

Ali​

Sorry I am just now getting around to updating! I have not had a good day. I have had a migraine all day which in turn has made me very nauseaous. Then this afternoon I stubbed my toe and ripped the entire nail off my pinky toe. So my foot is throbbing. It just has NOT been my day!

Alex is doing okay. He desparately needs blood. They decided to wait until the morning. He seems to be getting better each day from the infection. The doctors have warned us we are still not out of the woods, but they are encouraged that he is playing and smiling more each day.

Alex is now on full strength formula!!!! We will go to 20 cc's tomorrow. I can tell his ammonia is already starting to go up. Please pray for me to be patient with him. It is so difficult when he is so mean to stay calm and collected. I am so used to him being such a good boy. It is hard to see him disobeying and hitting and throwing and all the other things that make me crazy when his ammonia is high.

The hope is for us to go home early next week it things continue as they have been. For a few weeks April 7th has been our goal date as my Dad flies in the next morning to visit for a week. We are desparately hoping and praying we do not have any more set backs!

Ali