Saturday, February 13, 2010

Another day, another WONDERful nurse

This is how he lives

The last few days have been fairly uneventful, besides the annoyance of a new nurse in the morning and again at night every day, if that is the worst of our problems, we gladly accept it. I read of few of the post, and can chuckle at the fact that I am complaining about new nurses and not a serious medical issue.

This is after our Helicopter Tour (Take a good look at it Nick)

Therapy has been going well; X is making progress every day and the Therapist all wish he was on their floor to work with him more consistently. Walking has improved, for X it means he is headed towards more of the freedom and independence that he once had, for me it means that after the next surgeries I know he can recover. It is a very disturbing feeling watching your 5 year old learn to walk and talk again. He was talking at 10 months and walking at 14 months, only until recently has he slowed down; there is a certain amount of grieving that I force back as I watch his rehabilitation process. As I watch Xander rehab. I am able to see how different he is than most adults. I would be more focused on what I was once able to do, he is more focused on the task at hand; I have yet to hear Xander say "This sucks, I used to be able to walk, talk, and use my right arm/hand, and now I can't". I see how intensely he focuses, and is proud when he is able to accomplish the simplest of tasks; how he looks to see if I am watching him, and the twinkle in his eye when he see that I am.
Some new gifts


Xander is trying so hard to do things on his own that we are forced to keep a very close eye on him, even when he is sitting down. Yesterday Xander was scooting around on the ground with his brothers and almost lost his balance, just the thought of him falling on the ground and hitting his head sent shivers down my spine. This is one of the many times where allowing independence must be balanced with being cautious, something that we are looking to figure out ourselves. After all of the recent events I would like nothing more than to keep him in a bubble, safe from all of the world’s harms, but that is not what makes Xander, Xander. If you have been over to our house you would know what I am talking about, the long distance love-sac toss, extreme wrestling, and non-stop brother attacks; Xander is wild at heart and temporary weakness will not stop him.
Hanging with Family

Today we had a slew of visitors, my parents, Titi and Uncle Andy, and Nana Judy; it is nice to have family here to talk to, and it is good for X to see them all. One thing is certain when it comes to being so far away from home, it can get lonely; but that is the sacrifice we make in order to have some of the best care. We are not totally alone out here; we always have the Eckersons, who have treated us like we have the same last name. We receive visits from them daily, and even good home-cooked meals; I tell them all the time thank-you, but that seems so menial.
X and Travis Aka: Travelbug

We did take a Helicopter tour today, sadly I did not have my camera with me. Xander had a blast walking around the Helicopter, and sitting in the pilots seat. The twins were trying to climb on everything that was marked "Do not climb", I am glad we had all the help we did, otherwise I would probably be paying for a new helicopter. I mentioned that X made a video for everyone, while it is not the best, it was free. here is the link to see it    The bad thing about it is you cannot hear the questions he is anwering, we are going to send a copy to X's preschool so they can see him.
Since there is not much to talk about I want to mention Xander’s Preschool "The Wonder Place". Earlier I had mentioned that I loved that place, and now I want to expound on that. Xander goes to this pre-school that is only blocks from our house and it is attached to the Dundee Presbyterian Church, the teachers are great, and he has learned so much there. One thing you should try to picture, if you can, is me walking into this nice church with very nice people; my hair was longer than, and I had facial hair, not exactly the typical cliental they had. One thing I will say is that they were always nice, I am usually quiet dropping X off or picking him up so I am sure it may have been perceived as rudeness, but most nights I do not fall asleep until 2, so I am just tired, and not a morning person.
Going on a walk with the Boys

It was too precious not to have a picture taken

Okay I am rambling, to the point. Ms. Benedix and all of the other teachers have been with Xander since he was a month shy of being 3. Just this last year they gave him an Indian name for Thanksgiving, they explained that some Native American Tribes would not name their children until they were older, and would name them something appropriate to their personality. The name they chose for Xander was Tender Tiger, when Sarah and I heard this our hearts melted, they really knew our Xander, that name says it all.
X picked this hat out himself

Prior to us leaving for these surgeries, Ms. Benedix had spoken to Sarah and explained that they were willing to help out with X even more, since he was falling due to his seizures. If that was not enough, they have helped him with using his right hand, which was growing weaker by the day, and informing us of anything abnormal. It was not a huge surprise when they threw a party before he left for these recent surgeries. We came with our cameras in tow to take photos of all his friends so we could hang them in his room. The cameras would not be needed since they had already done the same thing days earlier, making X his own photo album with all his little friends. The teachers then explained that X would be receiving mail from his classmates during his hospital stay; I was able to stop the tears then, only because I had not yet broke my emotional barrier. We have since received that mail, a banner pictured in the previous post, and personal notes from each classmate; and we have been informed that there will be more. I think it shows another example of how God already paved the path for him, and the teachers there are the very essence of the word.
X trying to make me cringe, he is pushing his squishy head in.

I am going to say one more thing; Dundee Presbyterian Church is really Loving God and Sharing Jesus Christ. If I was the Pastor of that church I would be proud of my congregation as I am sure that God is smiling down at them. We do not attend that church, but I have been made aware of a group of individuals from that church that are planning on providing meals for us when we return. How rare is that? People who have no family ties to you offering to help you in your time of need, sacrificing their time in order to help. That is what being a Christian is all about, being Christ like; again I am forced to throw away any thoughts of moving from that neighborhood aside, and accept the fact that I will be in that house forever.
Some of his Hospital gifts

We have received care packages from numerous people, and there have been questions on a "fund". That is in the process of being created, and as soon as I get the final word on that I will post it on here. If all goes well we should be home around the first or second week of March, we cannot wait to see you all.


  1. Love the rambling and the pics... Thanks for sharing! Happy Valentine's Day!

  2. The picture above actually made me cringe too, and I'm not usually very squeamish.

    Xander (Tender Tiger), Rachel and I love you your whole family and are praying for you daily. Keep that Eye of the Tiger I know you got from both your mom and dad.