Alex and Maddy

Alex and Maddy

Friday, November 26, 2010

So Many Blessings

Happy Thanksgiving!!!
Time has really escaped me! Where has two and a half weeks gone! I apologize it has taken me so long to update. The second weekend of November we spent a night camping with Cub Scouts. We had so much fun. I continue to be thankful for the incredible group of people boys and parents who surround Alex with love and compassion. I often find myself with tears in my eyes as I watch Buggy partake in the normal activities of childhood that most parents take for granted. Other then camping, we have spent a lot of time in therapy and school.
Medically, Alex is doing pretty well. We have some nagging issues that we haven't quite gotten under control. He is still having seizures, he is having some neuropathy in his hands and feet, and most concerning, we cannot get his feeds back to his baseline rate since his illness in September. On a positive note, his labs look good and he has gained weight since starting TPN (IV nutrition at night) after 2 years of no net weight gain.
Yesterday, was one of my favorite Thanksgivings in a long time! We had the honor of hosting Missy, Ben and Lauren. After the loss of Samuel in September, Missy and I talked about how hard the holidays would be this year. They knew that their "normal" traditions would bring pain. I knew Bruce, Alex and I were going to be alone this holiday and immediately invited them to be with us as I am always sad when I am not with family on the holidays. And truth be told, the Knights and the Beckwiths are way more family then friends at this point. So Wednesday night they arrived and we fell into our comfortable routine. Alex and Lauren hit the playroom at full force and Missy and I hit the couches with the same enthusiasm. Ben and Bruce were just happy to be able to go to bed early! Missy and I chatted the night away and the kids finally crashed together in Alex's bed. Yesterday was just SO relaxing. There is a comfort and a familiarity from having spent months and months of living together over the past few years. It was easy and enjoyable. We were so sad to see them hit the road last night. I feel so lucky that of all the choices they could have made, they decided to spend their first big holiday without Samuel with us. My greatest hope is that we helped them create positive, happy new memories and a small measure of joy.
I will be the first to say that our life has not been the easiest of paths. I am grateful everyday for the blessings that surround me. For our incredible family and friends who have sustained us emotionally, financially, and spiritually over the last year. But mostly I am thankful that God chose me to be the mother of the most incredible little boy!

Monday, November 8, 2010

Photos Galore

Where do I even start! What an incredible weekend we had last week. Blue Angels, Mito Camp, and Halloween all in one weekend!

We went to see the Blue Angels as guests of Make a Wish. We were so close to the runway. It was so incredible. It is a day Alex and I will never forget. After the show we got the honor of meeting the pilots. Being the crazy woman I am I took over 500 pictures! Looking through the pictures was almost like reliving the show. Hope you enjoy them!

Straight from the air show, we got on the road for camp. We were headed to Camp for All. Camp for All is a barrier free camp that allows chronically ill and disabled children to enjoy camp like everyone else. Mito camp was set up with the kids separated from the adults. So once we arrived Friday night, we checked in at the medical clinic and Alex was off to join the other little boys in his cabin. One of the great things is that each camper has their own counselor. The ratio was 1:1 or 1:2. Alex had a counselor to himself to make sure he was safe. We saw him at meals and for a few activities, but for the most part he was away from us. We were able to climb a rock wall, go down a zipline, canoe, fish, cook with a chef, petting zoo and horseback riding. I am not sure who had more fun the kids or the adults. I just know that we will all be looking forward to next year! (I don't have many pics bc my camera died and I forgot my charger)

After camp we headed back to Hotel Knight to prepare for trick or treating! We had a great time spending the night with good friends. Alex was thrilled to trade Daddy his candy for a new game!
After our couple of appts, we headed home on Friday. Alex has a minor cold, but is doing really well. So far he has been fever free. We are keeping our fingers crossed it stays that way.
Thanks for checking in!

Wednesday, November 3, 2010

Quick Update

Details and pics to follow in a long post when we get home!

We had an incredible time at the blue angels air show and at mito camp! We have had a good week of appts and are hoping to be home by the weekend.

Monday we saw ENT. They feel like Alex's adenoids and sinuses re both okay to just watch at this point unless they begin causing more problems. We do need to start ear drops to break up a ton of impacted wax in his ears that could be efecting his hearing. The next time Alex goes to the OR they will clean out his ears.

Tuesday we saw Dr. Navarro (GI). He was absolutely thrilled with Alex's weight gain. Alex has gained 4 lbs since starting our 3 nights a week of TPN. He is on the weight chart at the 1%. His BMI is also on the chart now. We will continue the TPN for the forseeable future because of the good results. We also discussed Alex's liver and the concerns about future liver failure. We will set up a consult with the liver transplant specialist at the hospital so we can understand the process and the testing we would undergo if a transplant becomes necessary. Other then that we will keep everything the same.

Today we saw Dr. Pacheco (immunology). She is also happy with how he is doing. We will run some labs. We also performed a Pulmonary Function Test that looked good.

The bad news is that once again Alex's port is not drawing back. How many times have I blogged that in the last few years!!! Alex's surgeon called me today and once again we have decided to go to all costs to save this line. Alex will be admitted tomorrow morning. He will have a chest xray to make sure the line is where it should be. Then they will TPA it. Assuming the blood return is back we will be discharged. If we can't get it working, Alex will go to surgery Friday morning to replacet he line. I have no reason to believe this will be any different then any other time, so I expect to be in and out of the hospital.

In the meantime, we are enjoying time in our second home with our "other" family! As I promised a much better post when i get home!