Grayson is still doing physical therapy but only every other week. Since we have been home he has made huge improvements in his gross motor skills. It seems like each week we have been home he has started doing something new. He started crawling, pulling up, going up the stairs, and just this past weekend he started walking. Not just a few steps but full out walking anywhere he wants to go. You can see the satisfaction in his face when he stands himself up and simply walks where he chooses. It cracks me up! It is just so exciting to see him walking and very freeing. Mainly because I don't have to carry him everywhere :) This new found freedom does have its drawbacks. We have three flights of stairs in our house and Grayson is drawn to them. Tom had to put all the gates up this weekend. Grayson is also in the habit of picking up and carrying objects around with him. He likes my bright red colander which he plays with frequently and carries it from room to room. Sometimes this throws off his balance and he's head a few tumbles but his bruises always heal. They do take a longer time to go away but the doctors say that is all part of a recovering immune system.
We are still in clinic once a week for blood work, exam, and medications. He is down to one medication twice daily which is the immune suppressant and then one or two meds that are given in clinic through his port. The port has been wonderful, now that it has healed. The port is all under the skin so Grayson takes at least one bath a day and sometimes two or three just because he LOVES the water! His favorite word is bathtub! He is talking so much. He wakes in the morning, nurses and then points to the bathroom and says, "bathtub?" I got the coolest bath toy that is sort of like a sprinkler with stacking elements and he will play in the tub with this thing until the water gets cold and I have to pull him out kicking and screaming. Yes, my sweet little angel has quite the temper. He still holds his breath when he's mad and his lips go blue, but thankfully no passing out episodes. It's just to the point where you think he's going to fall over and then...a breath.
He is still nursing frequently but he is also eating very well. He seriously eats more than Gavin and he will eat things like asparagus and broccoli which most babies/kids don't care for. I asked his doctor whether he thought the nursing was still beneficial or if/when I could start weaning. He told me "high school"! Hmmm, that might be awkward to pack in his lunches. He said it was still providing important antibodies which his immune system is lacking but that after he weans off his immune suppressant I could start weaning. I don't mind nursing him except that he has to have my hair in his fingers when he nurses. Its somewhat extreme because if I have my hair pulled back he reaches his tiny fingers up into the roots of my hair and yanks down until he can get a few strands loose. I am surprised I don't have bald spots with all the hair he's pulled out of my head. But I am not complaining because I know I will miss that part of our bond after he stops.
Speaking of hair, Grayson's has not grown back yet. Normally around day 100 post transplant doctors say kids have what looks like a buzz cut, but Grayson just looks bald. His hair is starting to come in but in patches and it is so blond that you can barely see it unless you are up close. Oh well, hopefully he will have hair before he goes to kindergarten. If not, we'll just say we cut his hair to look like his Daddy ;)
As a family we are still trying to adjust and catch up on home life. One thing Tom and I really have tried to focus on was not letting the outside world interfere with our family time. We have been trying to restructure to put God first and Family second. Everything and everyone else can wait. This is a lot harder than we thought because little things sneak into your life and try to pull you away from those goals. There is also guilt associated with trimming activities and in some cases time with people you like out of your life. There is a battle going on inside me right now. I want life to return to normal because I believe it will offer me some sort of comfort after what we have been through. On the other hand I fear that if things go back to "normal" we won't appreciate what we went through. We have been given a rare gift. We were given an opportunity to cut out everything in our lives that was not important and simply focus on what was and we were okay with that and other people supported us doing so. There was no guilt associated with it, no pressure from the outside. Now that we are home, I find I get overwhelmed much more easily because so much of what was in my normal life was unnecessary. I know we can live more simply because we did it for several months. Of course that wasn't by choice and it involved a lot of stress and discomfort but it showed me that there are definite areas in our lives where we could take a step back and ask if this is time/energy/resources well spent. We are spending a lot time in prayer over this as we get our lives back in order.
The other two boys are doing wonderful. Through the whole illness Mason never missed a day of school and he got two A's and two B's on his report card which we are so proud of. He is finishing up AWANA's at church and is very sad that it is over. Mainly because our friends Mike and Annette and their three boys have been taking Mason in on those nights and he loves playing with the Meyers' boys! Annette has promised he can still come play even after AWANA's, which Mason was pleased to hear. The Meyers have just been one of the many families that have made this time in our life less stressful and brought joy to us because of their servants hearts. Thank you Meyers' for loving on Mason and our family!
While I am thanking people I will have you all know that I am working on thank you cards and I have reached a dilemma which is I don't have addresses for everyone I want to thank. If any of you have any ideas about how to thank people without addresses or e-mails, please let me know. Two people I do have addresses for but will thank on here anyway are my mother and mother-in-law who continue to bless us each and every day. My mother still comes up a few days during the week to help out just because she wants to and it is a huge help! My mother-in-law who had my boys every Thursday through Sunday during Grayson's illness also worked a full time job! She took off every Friday which was a huge sacrifice and she continues to provide anything and everything we need. She just recently cooked and entire Easter meal and brought it to our house because Grayson was unable to join in on the regular large family gathering. I am just blessed with two very special woman that love their children and grandchildren so sacrificially. I love you both so much and Tom and I just could never have done this without you both.
A have some pictures to share with you. These are from the Port to Fort Race for Believe in Tomorrow. Thank you to all the people that donated to this organization. It is truly a great non-profit and the service and housing they provided to us was awesome. This was our family's first outing after our homecoming and it was so much fun. We had an awesome team "Racin' for Grayson" and we had t-shirts which were donated by our local dentist (Moore's Family Dentistry) Thank You! It was a great race and we even got to see one of our nurses there. Kacey was there and followed our shirts to find Grayson. It was so good to see her and it brought back bitter sweet memories of those months spent inpatient with her. We love you Kacey!
Then my friend Rebecca came over and we did a little photo shoot of Grayson in all the cute hats that our friends sent in. We actually got so many hats that we just had to pick some favorites because Grayson simply would not hold still long enough to get all the hats on him. We had to bribe him with pretzels for half the pics :) Thank again Beck for these pictures. They are so funny!
https://picasaweb.google.com/beckmerson/GraysonSHats?authkey=Gv1sRgCKrO0bbtwt_zoAE&feat=directlink
I will post Easter pictures in the next one because this post is getting way too long! Thank you friends and family for your continued support. God is Great and our boy is a champ!
