Almost Halfway!!

(November 2005 - Addie and Ryan are in the red snowmen shirts)


"And therefore will the Lord wait, that He may be gracious unto you." Isaiah 30:18

Thursday is day 15 - Only 15 more to go!!

Ryan has done very well the past three days - no dry heaves and no issues with breathing/tonsils! I am so very thankful - the breathing issue was really starting to wear me down emotionally as I knew we had a long way to go. God is faithful! His hematocrit was up by one - it was 31, so no transfusion! They will check again tomorrow and see how it is. He has been running a low grade fever the past few days - no one seems very concerned, but you do worry a bit. He is extremely tired and has very little appetite. He thinks I am so evil when I insist on making him lie down in the afternoon - he never, ever took naps even as a baby ... and now, he still fights it so! It's so hard to make him do it, but I know it's best and he always falls asleep fairly quickly. Today he is sleeping in the floor - I guess he thought he was still in control by choosing where he would sleep :). That is so Ryan to always be in control! He is always telling the nurse (we love Daphne!) which he wants her to do first - take his temperature or check his port-a-cath placement. The order changes everyday and it usually takes a while for him to decide which she shall do first. He also instructs them to push his sleepy medicine slowly -if he thinks they are going to fast, he lets them know! One day he told them that he wasn't tired and didn't want to go to sleep:). They are sooo great with him though - what an answer to prayer that Ryan never seems afraid of any of this!! He is verbal about that he would rather NOT be going, but he isn't afraid of anything. Everyone is just so good with him - I will miss each of them, but will not miss going to radiation everyday!! Ryan is now saying that he is going to be a doctor like "silly Dr. Hayes" - he is very silly, but Ryan loves him. (I like the idea of his being a doctor better than his previous plan of being an astronaut - after all of this, I don't think I am up for standing by as he takes off into space - he said he was going to be an astronaut instead of a policeman like his Daddy - being a policeman is too dangerous!:)) I asked Ryan if he would be that silly and he said, "no, not as silly." I love how they do let him be as "in charge" as he can be and that they never rush him - they work on kids time. They are good with us too - always encouraging us. You do grow emotionally weary, it is so hard to hold his stiff little body( he doesn't fight really - just gets really tense and fusses a little) while they give him his sleepy medicine and then feel it go limp as he falls asleep. Many days, I think I just can't do it again - but, His mercies are new every morning.

Ryan's hair did start falling out, so by the w/end it looked pretty rough and it was hard for us to see all that hair just keep coming out. So, he and Rob had their heads shaved - Ryan hasn't seemed to miss a beat and does not seem bothered at all by being bald. He looks at Rob and just laughs and tells him he looks funny. We went to the movies on Saturday and it was very interesting watching everyone trying to look like they weren't staring at us - it was actually pretty comical. I got tickled thinking what on earth people were thinking as they would look at Ryan and then look at Addie - I told Rob that we pretty much represented most of their worst nightmares. Funny how God can make you just laugh at stuff like that and show His humorous side. Obviously we don't see either of our sweeties as a nightmare, but as precious, precious gifts.

Please forgive me when I don't return your e-mails, phone calls, etc. I would love to return each and every one of them - but I feel like I hit the ground running and never stop during the day! We leave early and by the time we get home my energy is zapped - then Addie comes home and I feel like a full time referee. Even though Addie is almost 8 - developmentally she is
often right on his level and you cannot reason with her. He pesters the fire out of her and then she always shoves him right on his port - I am so afraid she is going to yank it out! Please keep them coming as there always seem to be one that has perfect timing and encourages me to keep on going! I would love to thank each of you in person - we still can't believe the love and support that continues to be poured out upon our family - please know that we do not take it for granted.

The scripture above really encouraged me as far as Ryan's facial palsy - Rob and I know that we have probably sounded like ungrateful children to many. I do believe and know that it is God's heart to be gracious to His children, why we have to wait for some things - we probably will never know or understand as His ways are not our ways. I do know that we are engaged in spiritual warfare - I continue to be reminded everytime the enemy shoots his arrow at us. He knows where we are most vulnerable and that is where he attacks - he has certainly been attacking us left and right as far as the facial palsy it seems. Our first appt. with the speech therapist was cancelled because she had a sick child -- I was so discouraged because she was the one I was most anxious to see. She was completely booked the next week, so they switched us to another speech thearpist - the next week when we met with her, I just knew the week before had been a God thing as our new speech therapist was a familiar face and went to the Gallatin campus of our church - I was thrilled and Ryan really connected with her right away (that is rare for him!). Well, this past week she was diagnosed with breast cancer. So, most importantly, please pray for Pam Williams as she begins her treatment! (I did get her approval to request prayer for her beforehand as I know many of you will know her). She will be having about 5 weeks of radiation -I am more than sad that she has to travel this journey and I am sad that she will no longer be able to work with Ryan. Pam is so sweet and has been such an encouragement to me - she reminded me that we must trust that whomever ends ups working with Ryan - that it has been ordained by God and that we just have to trust. I am finally getting the message I think --- trust and wait upon Him. I am sure I will have several more lessons on this as I am pretty slow :).

Please keep Rob's mom in your prayers too (Jackie) - she had her gallbladder removed yesterday!

Sorry so long - :). Hug and kiss your babies extra this week!