Ok, So I left off on Friday after we lost our blood return! Surgery was set up for Monday. Sometime over the weekend our blood return came back. I emailed the surgery nurse on Sunday night and left a message Monday morning. We were supposed to be at the hospital at 10:00. At 8:30, I hadn't heard from anyone so we headed in as planned. We registered in day surgery and waited for the doctor. About 45 minutes later, Dr. Tsao came out to speak to me. Once again we discussed the importance of limiting the number of times we change his port because he will have a limited number of access spots. So we decided to hold off on surgery. We will call down next time his port stops working correctly and reschedule from there.

So we headed back to Missy's house to get some formula, have lunch and we headed home.

Thank you to everyone who prayed for us over the last week. This was one of the easiest trips we have ever had to Houston. The kids already miss each other as do Missy and I. We can't wait for our next slumber party.

Ali

We are safely home! I am exhausted. Tonight you get the short version. Tomorrow you get a better update.

Over the weekend Alex's port started giving me a blood return again. We met with the surgeon this morning and decided once again to save the port as long as possible. Since it is currently working correctly we cancelled surgery.

Tha​nk you for all your prayers.
Ali

I am SO sorry for the lack of updates. My "easy week of appointment​s" has turned crazy and I don't have my computer. So here it is...

Our first appointment Wed. Morning was with our immunologis​t (Dr. Pacheco). There is some concern about the number of high fevers Alex has been having. At this point we will continue to watch him. The big shocker was that Alex has a sinus infection. He seems to have had it for a while which most likely explains the increase in temperature we have seen over the last few months. The GREAT news is that we tried an oral antibiotic and so far so good! When i told Dr. pacheco that Alex's port once again has no blood return she insisted we see surgery while we were here. So her nurse called and got us in at 1:00 on Wed. (the same time as our hematology appt)
We went to surgery and after much discusssion about whether to replace the port or try and use clot busting medication to get it working, we decided we needed to do everything possible before replacing it. The plan was to go to the ER the next day to administer the medication.​
We then quickly scrambled to hematology an hour and a half late! Things are going to stay pretty status quo in that dept. We may try decreasing the frequency of his procrit to see if he can hold his blood counts. The only other news from this appointent is that the red spot Alex has had on his nose for months is actually a hematology issue. There is nothing we do about it, but it is good to know what it is.
So All in all, we left the house at 6:30 Wednesday morning and returned at 9:00 at night.
Thursday we headed to the special needs dentist first and that was a disaster. Alex was crying so hard they couldn't even count his teeth. So in April he will have an exam, xrays and a cleaning under anesthsia at the hospital. Then th waiting began. My instruction​s were to call one doctor, wait for them to speak to the ER and then head over. Luckily, Lauren and Missy were at the hospital so we hung out with them. After waiting 3 hours with no word from anyone, Dr. Koenig told us to just go. After 6 hours in the ER, we had a blood return and were headed back to missy's to crash before heading home.
We woke up yesterday morning and I needed to put heparin in his port before we left. Guess what? No blood! So i emailed Dr. K and called the surgery nurse. She called back mid morning and Alex is scheduled for surgery to replace his port on Monday.

So we are once again hanging out and having funwith the Knights until next week. I cannot express my gratitude to Missy, ben and there entire family. They have been so wonderful. They have made both Alex and I so comfortable. They are sharing their home, their medical supplies, their privacy. We could not ask for better friends. not to mentiopn we have laughed so hard and had so much fun.
I will update Monday after surgery. Please keep Buggy in your prayers.
Ali

I wanted to put out a short update about our first two appointment​s.

This morning we saw Dr. Navarro (GI) first. He is extremely pleased with the strides we have made over the last year. At this time last year, Alex was on TPN (IV nutrition) was struggling with pancreatiti​s and was on the brink of 2 major surgeries. This year he is on tube feeds and virtually pain free. H eis home and happy instead of in the hospital. We are not changing anything right now, but discussed long term feeding hopes.

Next we saw Dr. Koenig. She was also happy with Alex's current status. We discussed a few concern​s. Mainly, his numerous high fevers over the last few months, his hand strength, and his fluid replacement​s and his continued tempermenta​l port. Last we discussed a number of upcoming tests that we will schedule for April.

I will update again tomorrow after two more appointment​s.
Ali

WAAAAHHHHH! Grandpa is gone! Yesterday was rough on Buggy. He simply loves my Dad and the jokes they share. When we dropped Dad at the airport, Alex just started sobbing. Dad is retired and has nothing holding him in NC (he retired there to be by us) so we are trying to convince him to sell his townhouse and move here.
We had a really quiet visit while Dad was here because the weather was cold and rainy. As Alex told us, grandpa has a pattern...r​ain, wind, rain, wind.

In medical news...we ran labs on Thursday. I am still waiting for a few things, but what we got back looked AWESOME! Some of the best labs we have seen in a while. When I look back over the last 18 months, we have added so many medications and interventio​ns to Alex's care not to mention new diagnoses. BUT with his new treatments he is more stable then he has been in a long time and we are so thankful for that!

We leave tomorrow morning for Houston. This is a trip that Alex and I are really looking forward to. We have no tests scheduled, no admission, pretty easy in our book. So we are looking forward to spending time with friends and visiting all Alex's girls! We will be staying with our good friends the Knights. Alex can't wait to see "his wife, Lauren". I was joking with bruce and Alex this week that we must be doing really good! Over the last few weeks I have received emails from several nurses and friends from the hospital "just checking in" because they haven't seen us in so long! I guess they just got used to us...it's only been 2 months! But on a positive note December was the first month since February of 2008 that we have not had to make a trip to Houston!

I will try and update from Houston. We will be seeing Dr. Koenig, GI, immunology, hematology, and a special needs dentist. We should be home Thursday afternoon.

A​li

We rang in the New Year with frigid temperature​s. So we have pretty much been hibernating at home. Alex (and I for that matter) really don't do well with cold temps. I must admit though that after our self imposed isolation since flu season started, Alex is getting a little stir crazy. Luckily we are venturing out to Houston next week. Alex LOVES Houston. Being my child and a total social butterfly (when we allow it) he loves seeing all his "girls" at the hospital and all his little mito friends.

In the meantime, we are having a lot of fun with grandpa. Alex and Grandpa love to give each other a hard time and there is lots of laughter.

Alex went for a haircut two weeks ago, but the girl was HORRIBLE! His hair is so uneven and choppy. How do you mess up a buzz???? Anyway, we are taking him this morning to get his haircut again.

Yeste​rday, We had my Aunt and Uncle over for dinner and to watch football. Alex loves them and was so excited. They also brought him a tent for Christmas. it was a huge hit. He was in and out of that tent the whole time they were here. He decided to "campout" in our room last night. As I write, he is still sound asleep in his tent. The only problem is that the tent is so big it blocks the entrance to our bathroom. You should have seen me trying to get in to brush my teeth last night!

Bruce​y is still on the job search. We are praying for the right job to come through. I am trying to trust my belief that God has a plan and we are in the right place at the right time. In the meantime, I am so thankful for the friends and family members who have helped us as our financial situation becomes scarier and scarier.

Ali

Happy New Year!

We got the new year off to a great start by spending New Year's Eve with Alex's best buddies. Melissa (one of my playgroup Mom's) deci​ded we needed to start a new tradition of having a New Year's Eve party. She graciously invited us all over. So all 19 of us piled in to the Malone household for some fun times. Alex loved every minute as he always does when he is with his friends. Me too! Playgroup is the one time that I am free. It is the only time that Alex is willing to leave the confort of Mommy's side. It is my break and my salvation. The precious "me" time I am so lacking. So girls- Thanks once again for allowing me to relax for a while.

I wanted to take this time to Thank all of you for being such an important part of our lives. For allowing me a place to share our joys and our fears and brag about my little Buggy. For all the times we have been lifted up in prayer. For the countless blessings we have recieved. Whether it is a phone call, an email, a dinner cooked or a gift, they are all precious to me. So many times when I have been sad or scared, I have come online to find a note in the guestbook or an email in my inbox that has lifted my spirits. For each one of you I will be forever grateful. Thank you for taking some time out of your busy lives to share in ours.

I got a gift in the mail on Thursday from a dear friend that I used to teach with. It was an angel (I have collected angels for years). I opened it and had tears in my eyes. I will leave you with the saying....

B​elieve when it is beyond reason to believe!

May you each have a wonderful and blessed New Year.
Ali