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
Alex and Maddy
Sunday, November 20, 2011
Friday, November 11, 2011
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
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
Tuesday, November 1, 2011
A few pics from the breakfast
I was so fortunate to have the help of my friend, Jess Sweetland, who took pictures for us the morning of the surprise. Here are a few to enjoy!
Alex's reaction upon seeing the limo!
Alex with his buddies
The moment he realized we were leaving on our trip!
The kids enjoying the limo
Us with ChaCha
Chillin'
Best Friends Forever
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