Wednesday, February 3, 2010

My hero's: Wysdom and Mom

Can I just say that Wysdom is my HERO. He has been through a lot in the last month and a half but he just keeps on smiling and fighting his battles as they arrive. I am so proud of him today. We went to the hospital AGAIN( yes I know you must all be so sick of me telling you this) I will tell you because that is all I have to talk about as it is my reality right now. Anyways he had some g tube issues over the weekend and ended up getting some granulation tissue taken care of today. Taken care of sounds much better than burnt of with Silver Nitrate. He handled it like a champ. Oh yes he screamed and cried his head off. I knew this was going to be the case as one mother on the BBC had shared her story with this experience with me. After about five minutes he calmed down and gave us some big smiles and was playing like usual.

He is so strong and has gone through so much and continues to thrive. Even with all of the tube problems we just found out that he now weighs 21 pounds and change. He is growing and gaining weight at a good rate putting him at the 75% on the Down Syndrome Chart. So yes he is my HERO!

This week Wysdom has mastered puckering up and showing me that he can give me a kiss. Since I am part Polish, I say it to him in Polish and he just puckers up and plants one on me. Through all of the trial and tribulations we are having fun with him. We are well into our natural routine that I blogged about earlier. He is taking his probiotics and vitamins well. Really he should have been on this a long time ago, but for whatever reason I felt quite hesitant. I am guessing probably because he has had so many medical issues that I felt afraid but in reality I am sure it is the best for him.

Wysdom also performed on cue today too. We went to visit my mom, who is very ill and is just hanging on right now. She is a sleep for most of the day. However today she was able to see Wysdom smile and wave at her. He even tried to give her a kiss. This was a great joy to me to see her smiling and responding to him. I know that she loved coming to our house to play with him and loves him dearly. Anyways that is about all I can say as this is bringing me to tears.

So the plan is for Wysdom to heal from his g tube and get him back into his activities which he has been banned from for the last month or two. We actually banned him from going on his tummy as to let the tube heal. He still finds his own way once in a while. So hopefully this week he can be free to do whatever.

We are also having a meeting in the morning with our OT, PT and a vendor. We are hoping to find a sleeping arrangement for Wysdom. Something that is elevated but comfy so that he can have a better sleep. Right now he spends most of his time sleeping in his bouncy chair. His crib doesn't do the job. Even with it being elevated it doesn't seem to work for him. His playpen sometimes works if it is not around feeding time. So the poor little guy sleeps in his bouncy chair. So the vendor will be bringing some wedges and sleeping items. Wish us luck!

The plan for me is to spend what little time I have left with my mom. She is a fighter but this battle is a hard one that she is not winning. Everyday right now is such a gift of time. So please keep us in your prayers and thoughts through this difficult time. I also just wanted to send out some love to the several moms that have their little ones in the hospital right now from illness and also for heart surgery. My thoughts and prayers are with you too.

Thanks everyone for your prayers and wishes.


Kelly said...

Glad to hear that Wysdom is staying strong. He is a fighter!! Good luck with sleeping aides, I hope you find something that suits Wysdom well. Continuing to pray and sending lots of positive energy your way! Keep you head up Sasha:)

Lacey said...

What great things Wysdom is doing. Praying for your mom, that she is pain free, and you can spend as much time with her as you can.

ParkerMama said...

Wysdom is going to set the world on fire! And I can't wait to watch him in action!

Michelle said...

Oh Sasha, I wish I had the words...but I know that no words can take away the pain of dealing with what your mom is going through. I'm in tears here :( I'm so sorry she's struggling; I'm so sorry you all have to deal with this and go through this.

Beverly said...

keeping you all in our prayers Sasha. Sending hugs to you too. you are so strong and such a loving person.