3 weeks hospital free!

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I hope everyone enjoyed Halloween and is getting ready for thanksgiving and the upcoming holidays! I am very excited that AJ will be home for thanksgiving. We sure have a lot to be grateful for!   This year we are not going to go crazy buying a million things. AJ actually only asked for one thing!  He wants to go on an “adventure” instead of getting presents. He understands that making memories and experiencing life is the best present anyone could ever receive.

I think at times he is starting to question why he is  “ok” and not others. He asks, “why some children go to heaven and he does not?” I wish I had a good answer for him. Some might say because G-D has a different plan for him, this isn’t his time ; he is a strong kid or a million different variations of that. I am very careful of what I tell him. I never want him to think that the children who do not make it were not strong enough. It is a hard concept for a 6 year old to process, most adults have a hard time dealing the same issues.  I will always make sure he knows how grateful we are that he is still with us and I will always remind him to keep those who are not in his heart!

I cannot imagine how those families are coping, especially during the holiday season. I just want to remind everyone when you are stressing about how many toys to get your child or standing in line for hours to get the newest “hot” item, that their is a Mom, Dad, Brother or sister who no longer has their daughter, son, sister or brother to buy for. Please remember that everyday 7 children die from cancer. Cancer does not care if it is Christmas, Hanukkah, Thanksgiving, Halloween or any other special time of year. Right now I personally know of three families who are struggling with the harsh reality of childhood cancer. Any day now the world will gain another little angel. Please keep these families on your mind during this holiday season.

AJ has been home for almost 3 weeks now and we have settled in to a nice little routine. Everyday AJ meets his tutor at the library. He is starting to really love reading and is catching up well with his school work 🙂 Three times a week he has OT/PT and in between that he has appointments at the hospital or at another specialist.

Since we came home I can really see how much he has matured since he was 1st diagnosed. It has been a little over 6 months since he was diagnosed.  He now walks around with such pride and a better understanding of life. He is soaking up every moment of “freedom”. Everyday I know his little body struggles to keep up with the world around him. Last week he went for a follow up hearing test. It was no surprise to us that he lost more hearing. He was starting to ask everyone to repeat themselves and was struggling to follow conversations. We knew he lost hearing in the high frequency but did not know if the chemo used during his transplant increased his hearing loss. Well it did, AJ now has severe hearing loss in the high frequency and moderate loss in the normal range in both ears. His right ear took a slightly harder hit. This is all OK because he just got a pair of super cool “spy gadgets” AKA his hearing aids. He has only had them for 1 week, but everyone can already notice the difference. I was really worried that he would not adjust well to them, but he loves them!

As most of you already know AJ also suffers from right side weakness from the surgeries and tumor. This causes him to have a pretty bad limp and he is always in constant pain. At times he can barely walk and running is nearly impossible. He still manages to play on the playground and play basketball for hours. He would rather deal with the pain then sit out. AJ is extremely passionate about a few things in life. One of those things is basketball. Since he was a baby basketball has always held a huge spot in his heart.  He always finds a way to “play” basketball. In the hospital, he always had at least two hoops up at all times. As a mom it crushes me to know his biggest passion now causes him so much pain. He never complains or asks to sit out. I hear him talk to himself and say, “Quitting is not a option”. Over the weekend I told him to take a break and his response was “No, I have to get stronger, I have to learn to push through, I am OK because I know my dream will come true”.   My wish for him is that he will overcome the pain and gain his strength back so he has a fair chance of reaching his dream!

These three weeks at home have been busy and filled with a lot of adjustments. I will admit that adapting to being home has been a little difficult. I have not worked since AJ first became sick, but being in the hospital all day kept me busy and I was always surrounded by people. At times being home can get lonely and we do get bored from time to time. AJ’s immune system is still weak, so no eating out, no crowded places and of course no place that is filled with kid germs. I will admit that I break the rules from time to time. Hand sanitizer, soap and water are our new best friends. I do love being home with him though! I was never able to be a stay at home mom. I am grateful that I get a “do over”. I sometimes act like a spy and listen to him read or figure out a difficult math problem when he is with his teacher. I am able to see him walk up and down the practice steps in physical therapy or see the huge smile he makes when he completes a task during occupational therapy. Those moments bring me the same amount of joy as his first words or steps did. I know he cannot wait till he is allowed back in school and able to be a “regular” kid, but I am selfishly loving every moment of having him home with me!

Shining Moments

~At the park last week, AJ made sure another child with special needs was included in the game everyone was playing. He then held his hand and helped him across the balance beam. AJ kept holding his hand and encouraging him to go across. Finally after many tries the little boy made it across. They both had huge smiles on their faces, which in return made me smile as well!~

The Crazy convo we had…

AJ: Mom, I have to tell you something!

Me: What did you do?

AJ: Do you want the truth or what I just made up so it sounds cooler?

Me: Just tell me what you did!

AJ: I spilled the whole bag of chocolate chips. I was going to tell you that a gerbil pooped all over the floor but I didn’t think you would buy that.

Me: AJ where do you get this stuff from?

AJ: I started to memorize lines from movies. I love watching you trying to figure out what I am talking about, we don’t even have chocolate chips to spill.

Please look on my good friend Nikki’s FABULASH page, she is having a open online party and they have pretty awesome gifts for Christmas. Proceeds will go towards AJ’s medical bills and therapy. Please click the link below for more information and products.https://www.youniqueproducts.com/nickybar…/party/851693/view

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HW time at starbucks!

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Broke some rules and registered him for basketball! You only live once, so I had to let him do what he loves the most!

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6 comments

  1. Sarah and AJ Iam so glad we got to visit you two in Ny you are an amazing mom and AJ is the most incredible little boy just being with you guys for a short time gave me a new outlook on life in general AJ has touched the hearts of more people then you could possibly imagine, I am so proud to call you guys family . we will stay in touch and hopefully see you guys in Cali when the time is right. In the meantime love and hugs from your Cali family & friends!!!! Linda

  2. I love you guys .. Your so awesome and look forward to spending time with you guys next yr when we come to NY… A.j your the man my little hero .. Hugs baby

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