Happy Thanksgiving

How do you so Thank you when your life is so full of blessings?

Top 10 things I am thankful for:

#1- My Sweet Buggy. Almost a year ago we almost lost our precious boy. I am so THANKFUL everyday for his sweet voice, his kind spirit, his quick wit, his joyful smile, his unwavering faith, his incredible bravery. I treasure each moment I get to share with this amazing child.

#2- My family who always steps up. Whether it is Mom jumping on a plane to be by our side when Bug is sick or Dad helping us when times are touch, or countless other relatives who support us, our family is ALWAYS there for us.

#3- My friends- I have some of the most incredible friends around the country. I have been so lucky my whole life with my friends. My friends are the ones I lean on. They are the ones who get the phone calls full of tears and full of laughter. I have friends from high school, college and motherhood who are willing to reach out and see how we are doing. Friends who understand that sometimes I go months without calling or emailing when times are hectic.

#4- Doctors, Nurses and Hospital Staff- I am more than THANKFUL that 4 years ago our path led us to Children's Memorial Hermann Hospital. I am continually amazed at the care and LOVE we find there. Alex's life is not easy and yet the staff at CMHH make it so much better. Alex is not only cared for physically, but his well being and chilhood is always considered. He is surrounded with love and kindness. Dr. Koenig, Dr. Pacheco and countless others are always tryign to improve Alex's health and Quality of life. There is always a volunteeer to play with. His "girls" (both nurses and child life) are always willing to do things a little differently so Alex can feel safe and secure and happy. Even the cleaning ladies go out of there way to say hi and see if we need anything. CMHH truly is a second home to us and we are so fortunate for that.

#5- Our "help" at home- First and foremost, Theresa, who has been our faithful nurse for over 4 years. She puts up with the craziness of th Beckwith clan on a regular basis. She has to deal with our crankiness and exhaustion. She is my right hand. I am forever asking her if she remembers something (because I have the world's worst memory, except for my mom :)). She keeps me on track with appts, supplies, household goods, prescriptions, etc. When I am annoyed with Bruce or Alex or someone else it is Theresa who has to listen to me vent. I am so thankful for her dedication and commitment to us. Then there is Liz, our beloved OT who has been with us for so long. She started working with Alex 6 long years ago. She has been through so much with us. She loves Alex and is able and wiling to work with him no matter what the situation or mood! Dr. Kristy- Last March Alex was at his lowest point emotionally. I was scared for his well being. He was scared, angry, sad. That is when we first walked into Dr. Kristy's office and our lives were changed. She is Alex's psycholigist and savior. I don't know where we would be without her. Our time with her has been nothing short of miraculous. Alex loves her and we will forever be grateful for the love and compassion she shows. Last, our amazing pharmacy and DME. Our compounder Stacia has been the only person to EVER make Alex's medications. Because of his allergies medications have been very difficult. Stacia has been relentless in finding and making safe meds. Neena and Michelle- Our sweet ladies from Optioncare who have to put up with harassement from both Theresa and I on a weekly basis as we track down labs and supplies. They are always so gracious and kind.

#6- Our awesome church family. They pray for us and welcome us back whenever we are able to make it. Over the years they have been willing to make so many accomodations so Alex could attend Sunday school or VBS.

#7- I am thankful for Bruce's Job. While it is certainly been a challenge to adjust to a new income and Bruce communting an hour each way to work, I know how many people are still unemployed.

#8- I am thankful to the Make A Wish Foundation of North Texas for making Alex's dreams come true this year. Our trip to San Diego was so incredible. So many people worked to make that week magical.

#9- I am thankful for research and new treatments that have made such a difference for Alex!

#10- The power of Prayer. I have been awed and amazed by how many people pray for Alex all over the country. I believe that those prayers make a difference and will continue to in my sweet boy's life.

I am sure I have forgotten someone or something...As I said at the beginning, How do you give Thanks for SO many blessings. I hope our family has in some way blessed you with our friendship and love. I know you have blessed us.

Have a very Happy Thanksgiving!
Love,
Ali

Long Overdue!

Sorry for the lack of updates!

Alex was discharged last Sunday. We rushed home and tried to get things put together for Grandpa's arrival on Tuesday. I was able (with the help of Theresa, Alex's nurse) t get the laundry done, the mail sorted, bills paid, house cleaned, supplies ordered and unpacked on Monday. Needless to say I fell into bed early Monday night! We picked Dad up on Tuesday morning and have had a pretty quiet week. Alex is getting back to himself. We really saw him struggle after our Wish trip. We are a few weeks out now and he got blood after being anemic for 2 months and he is getting back to how he was before the trip.  The other thing that has been great is that Alex has gained over 2 kg (or 8 lbs) since restarting his TPN (IV nutrition) in September. We know that TPN is NOT a long term solution. We know as well as anyone the risks that are involved. However, we are SO happy that when needed it can make such a difference.

We are reaching the end of the clinical trial for the EPI-743. We are done with the trial right after Thanksgiving. Luckily, if they determine that we have seen improvements he can stay on the medication. I have no doubt that they will see a huge difference in him!

I am also thrilled with how he is doing since starting the SCIG (immune replacement). While Alex still got sick, this illness did not hit him the way a virus typically does. He recovered quickly and held his own throughout it! I pray that we continue to see his little body fight with the help of all these improved treatments.

Dad is here visiting through Thanksgiving. We all fly out on the same day. Dad will fly home and Alex and I will take off for Stanford. We are only there a couple days this time as we only have a clinic appt and a repeat brain spect.

We are so thankful for you, our family and friends. I know I have not been calling, emailing, on fb as much. Thank you for still checking in on us. I am busy with Alex's schooling, medical needs, taking care of the house and trying to find a few minutes for myself!
Ali

In the Hospital

I really enjoy updating the fun parts of our life so much more then this! I have procrastinated updating because I wish I was talking about all the cool things we had planned this week. Unfortunately, this is what you get!

Alex really hasn't felt great since our trip. We had so much fun, but unfortunately all that fun comes with a price. Alex was really run down when we got back. He was cranky and was running low grade temperatures. He actually had seemed to improve last Sunday and Monday though. On Wednesday, he woke up not feeling well. He complained all morning of not feeling great. He asked to go down  for nap an hour early. He woke up around 3:30 and called me saying I needed to check hi temperature. Never a good sign! His temp was 103.5. I quickly started to throw things together to head to Houston. We arrived at the ER around 9:00. They were ready for us and immediately got things rolling. It still took us a while to get to a room though! They came back and told me Alex's white blood count was VERY high. We started antibiotics and waited to see if it was his port or something else. Yesterday Alex was fever free all day and it looked like this would be a super quick admission. However, Alex woke up with a fever this morning and it has stayed all day.

We still do not know the source of the infection. We think the labs on Wed night were an error and his line cultures were lost so we started over again this morning. He is getting ready to get blood and we have a plan, but his little body isn't cooperating! The plan is to continue anitbiotics for 24 hours once his fever breaks. Then we will stop antibiotics and watch him for another 24 hours. But our 48 hour countdown can't begin as long as he is running a fever! I am hoping the blood will help him tonight and leave more energy for fighting this infection.

The good news is that Alex doesn't feel terrible. We have seen Alex both sick and "scary sick". This is clearly NOT "scary sick". So we sit and wait...

Another fun part of the day is getting started on a new program here at the hospital. It is called the B.E.A.D.S. (Boldly Experiencing and Accomplishing Difficult Situations)program. Alex received a keychain with his name and a turtle representing mito on it. For different tests, procedures, surgeries, ivs, etc he can earn different beads. They started Alex with some beads from past experiences too. Obviously we can't acknowledge every admission, xray and IV Alex has experienced up till now, but we can show some of the big surgeries and tests. Alex's  string is already sporting 36 beads- 8 from this admission and the rest from previous admissions. It is such a neat way to represent all Alex has been through. We will be adding to it each admission.

Thank you to all our faithful friends and family who pray for us and lift us up through the hard times.
We love you.
Ali