Reflections...

This week started off on a not so good note. Lynsey's first day of school was Monday. She is now a fifth grader...where has time gone? I must say though, the first day of school is probably the hardest day of all for me. I want more than anything for Luke to be able to go to school and play with his friends, have fun at recess, be a little boy, and maybe even learn a few things too:) He should be starting third grade this week not having to worry about therapy, therapy, therapy! So, when I am feeling down, I will just randomly open my devotional to which ever verse comes open. Monday it was "Be still and know that I am God." Psalm 46:10. How appropriate considering how good God has been to us and how we know and believe he has great plans for Luke. So, I let my sadness go and focused on Luke. I told him even though sis was at school, Luke gets to be homeschooled. He thought that was funny. We have turned his room into kind of a therapy room, so he gets lots of working out and learning things too I hope.

Monday afternoon he had therapy at St. Joe's. They were talking to me about their program, etc., so I did not get to see a lot of what he did. The speech therapist did tell me they did some cognitive testing on Luke. Basically, they tell him stories, scenarios, etc. from a book and he points to the correct answer. Well....drum roll please....so far in the testing he is at a cognitive level of a 6 year 4 month old!!! Praise God for this in a HUGE way because when they tested him in January, they determined him to be very severely cognitively delayed! So he has essentially made over 6 years progress in 7 months, and they still have more testing to do. She was very pleased with where he is at. So Monday ended up being a great day!

For those of you that know me well, you know I am a major planner and list maker. Well, if there is one thing I have learned thru this journey it is, our plans are not our own. I would have never thought or planned two years ago that my life would revolve around therapies, drs appointments, hospital stays, surgeries, etc. I mean Luke was just starting first grade, both my kids were in school all day. I thought now I will have all the time in the world....funny how quick that can change. You know what though, I would not change one second of it, if it means Luke getting better and he is! We will keep doing whatever we need to do for our little guy. I saw a quote the other day that said, "Sometimes we make plans and God laughs." How true that can be...my life plan certainly did not contain the events of March 6, 2007, and if I had a choice, that day would be wiped away. Still, I can't help but know that day is part of God's plan for our lives in some way, shape or form. So much good has come from that horrible day and all of you our family and friends that have been there with us are a huge part of that. So thanks...please continue to pray for healing and restoration in Lukey. Believe because as it says in Jeremiah 29:11...we know God (not just us) has great plans for Luke!

Busy, busy, busy

Sorry it has been so long. This week has been crazy. Luke started outpatient therapy at St. Joe's on Wed and Thurs. So far, so good. He will have outpatient therapy there for about a month, then we will continue on with the home therapies. In other news....Mike and I have made the HUGE decision to have Luke's eyes opened with a lid lifting surgery. As you know, we have been going back and forth on this now for over a year! So many people that we met at Barrow's really feel it will be a huge benefit to Luke to get them opened. They think it will motivate him more, plus so much of our sense of balance comes with being able to see where we are in relation to the world around us. I think the deciding factor for us was the resident who was working with Dr. Kwasnica for the month we were there has a daughter who was born with one of her eye lids not opening. He said the surgery was the best thing they did for her. He came and talked to Mike and I both and answered a lot of our questions and fears about the procedure. I don't think it was chance this doctor just happened to be there the month we were...someone is giving us a big sign to get a move on! So please pray we are making the right decision with this...please pray those eyes will open before and the surgery will not be necessary. It is an outpatient surgery and is scheduled for Sept. 3rd.

On another note, one great thing that has been a huge help for me, is now we can slide Luke's wheelchair up to the table, give him some finger foods and he can feed himself. So for breakfast I cut up pancakes for him, and lunch give him some lunch meat, cheese, and some chips, and dinner cut up pizza or whatever, and he will eat it all by himself, using his fingers of course, but I think when his eyes are open he will do good with silverware. A funny thing about this is for lunch he will feel for all of the chips and eat those first before eating the other stuff. Little stinker! He is also continuing to try to say words and making a lot of sounds. Last night he said, "go," once and has a new sound, "ung" that we are not sure what he is trying to tell us. Pray for his airflow to increase for speech and his oral motor muscles to get strong.

Also, you will notice on the left side I added a fundraiser that is coming on Sept. 27th for Luke. It is going to be a fun, fun night. If you would like more info, visit their web site at http://www.eastvalleysol.org/ or contact Nick. Online registration is now up and going on their web site!

Thanks so much for your continued support, prayers, words of encouragement, they get us thru the bad days and keep us pressing forward to that light we know is somewhere at the end of this tunnel that can sometimes appear to be never ending! Believe!

New Wheels!

I had to post a picture here of Luke's new wheels. Plus...his old wheels that are now retiring (or actually being donated.) The old wheelchair comes with a story. First of all, it was ordered in April 2007, we finally got it in October. It cost over $6,000 (although the insurance did cover it.) It has a cool custom mossy oak camo paint job. I remember very well the day I took Luke and we picked it up because they had to adjust everything to fit him. I also remember very well the guy telling me, "This should fit him until he gets to be about 13." I almost completely lost it at that moment, but composed myself and told the guy, "Oh, no he will be walking long before then." He gave me a look of compassion as I am sure he thought I was completely clueless to the situation we were facing. But here we are...9 months later, with a brand new chair that Luke can push himself. We did not get to pick the colors, but the gold and black is not that bad. Go Gilbert Tigers! Dare I declare that in another 9 months this chair will be gone because Luke will be walking? Believe and see!

Ready to be home

Luke is finishing up his last week at Barrow's...1 more day to go!!!! I promise more pics soon. We are so excited to be going home for good after almost 4 weeks. We are certainly glad for the progress Luke has made. I figured up the hours of therapy he has had while we have been here and so far it is about 35 hours. So, I think the progress he has made is great! We will be starting outpatient therapy here at Barrow's next week. He will be getting 2 hours of Speech, OT, and PT each week here. Hopefully we can still keep him with an hour of horse therapy a week and an hour of PT at home with his physical therapist, Greg, plus we have a new program from the NACD that has some good things for us to do with him. So, we will certainly be busy, plus we plan to start oxygen therapy again the first week or so in August. Anyone know where we can get the extra 3-4 hours per day we need to do all of this therapy? It would be such a help if there was an oxygen chamber in the east valley because that is a 4 hour plus ordeal by the time we drive there and back and it is every day. We will do 40 dives then decide if we want to do more. Here is why we want to do the oxygen therapy (HBO,) again: "HBO can boast the stem cells provided the timing is right. We must let them find their target tissue, find a home and set up housekeeping and that process can take up to 90 days. After that mark you can use high levels of Oxygen to boast their growth."

Someone sent me an email questionnaire this week, one question was who is the one person you miss the most...my answer was my son prior to March 6, 2007 at around 5pm. We just all want him to get better so bad. We are certainly very thankful for how far he has come and very, very blessed that he is here at all, given the trauma he survied. Some days are just harder than others. I also feel bad for Lynsey and how much this has affected her and how much she has had to sacrifice, barely complaining at all. She has not had a summer vacation now for two years, her life is scheduled around Luke's therapies, she is shuffled between aunts, grams, nanas, friends (although I am sure she loves this and we certainly appreciate it very much.) She is starting school here in another few weeks, and I know she desperately wants her brother back with her at school. This will be the last year they will have to be in the same school, as she goes to Jr. High next year. So, please continue prayers of healing and restoration in our little man...we want our perfect little boy back more than words can say. In time it will happen because this much I do know...God promises a safe landing, not a calm passage and if God brings you to it, He will bring you through it. Believe!

Busy week in therapy!

Well it is end of week number three at Barrow's. This week they worked on Luke walking with the walker. He made it 50 feet on Thursday. This is with a lot of help, keep is mind, but with time we know he will get better. He does great with his right foot, but his left foot has a lot of tone he has to work against. They are trying to figure out how to best work around that, although Mike said today the therapist said he did better than yesterday. Today they took three of the kids on a little outing to a place called Stuffington Bear. Luke made a horny toad.

I have to say, everyone at Barrow's has been great, our stay here has been great! It has for sure been a little push Luke needed and also given us lots of ideas of things we can do with him at home. They have given us a discharge date of next Friday if all the paperwork goes thru. Then we will continue going up there for outpatient therapy, although they have not told us how many times per week that will be. We are also going to start Luke back going to the Hyperbaric Oxygen Therapy here in a few weeks. They recommend you do it 3 months following stem cells to give them sort of a boost. We saw great results with it the first time, so we will give it another go. Thanks for all of your support...have a great weekend, and always believe!

Great things!

Sorry...it has been a crazy but great few days! Luke has a few new tricks up his sleeve and he loves to show off. The first one, I have to admit, I never thought I would be excited to write about, but I am. He can pick his nose with his left hand!! That is right...his left hand, the one that is in a fist and contorted in some of the pictures I post. He had his first purposeful movement with that hand on Monday when he licked frosting off of his finger, then today he could pick his nose, and even when I left the hospital tonight my aunt told him to wave by and he lifted his left arm and hand up. This is an awesome improvement as Mike has promised to take him fishing when he can use both hands:) Guess a trip to the lake is in our future.

Today we had Luke's evaluation with the NACD. They give us an evaluation to fill out on the program and I had put that we felt Luke was reaching a plateau-well that was my first mistake! The last time they evaluated Luke was the beginning of April, before the stem cell therapy. Well they are amazed at the progress he has made. She looked at me and said, "Stacey, the last time we met this kid could not hold his head up, he certainly could not sit up, could not move his left hand, his left leg was much weaker than his right where now they are equal, and you think he has reached a plateau." Okay, so what do I know, I guess that is what happens when you are with him day in and day out, you forget about the small things that are getting us to the BIG thing! So she was super impressed with his progress and also the strength he has in his muscles.

Now this was my post from Monday that I never got around to posting...
Luke had a great day in therapy today! His started off with the cutest puppy coming by for a visit, pet therapy. They put the little shi-zuh on Luke's lap and let him pet him; he loved it. He especially liked it when the dog barked for him, and hours later when I asked him how many barks Tiger did, he would hold up two fingers. Then in speech he worked lots on blowing bubbles and blowing his horns. His mouth seems to be getting so many more movements. (Mike and Jaimi, the therapists love the Oregon ducks blower horn and want to know where they can get them. It is Luke's favorite horn to blow:) This afternoon he was able to make a fire truck and spider out of food with the great recreational therapist, Natalie, who also happens to be the aunt/sister of our dear neighbors. I think he had the most fun licking the frosting off his hands. They told me to put some on his left hand, sure enough he brought it up to his mouth to lick off. They all agree he is capable of doing so much with that arm (he proved that today), but has some "learned non-use" of it. The best thing of the day came when Luke woke up from an afternoon cat-nap. Mike had just gotten there. He woke up saying a new sound, "n." Then it became a, "no," sound. We told him no more using his hand to show us no because now he can say it. So I asked him if he liked barbie dolls and he said, "no." Praise God for all of the great things we are seeing...He can only do great, awesome things, and I can't wait to see what tomorrow brings!

The Lord is good to those who depend on him, to those who search for him. Lamentations 3:25

Better Day!

Luke had a much better day today...thank you for your prayers!! For the most part, he was pretty cooperative. They have started taping his open eye open during his therapy sessions. He is tolerating it pretty well with his right eye. However, his left eye does not blink so he hates it. The only thing he really refused today was trying to walk. He was being so stubborn and fighting the therapist so bad she couldn't even lift his leg up. It was towards the end of his session so she didn't want to fight too much. Mike said he had him up and walking (with tons of help of course,) around the room tonight so at least he got that in. Otherwise, in speech today he was blowing bubbles, practicing making animal sounds, making sounds when playing with cars, chewing gun, drinking from a straw. In OT, they are really working on his left hand, and the therapist is noticing a difference since he started working with Luke this Monday. He also works on Luke's balance, and also said he is noticing a difference with that. We have too. He does this new thing when he is sitting in his wheelchair where he sits up really tall with his head straight and chest out. I call it is Superman pose. In PT, today they were working on standing, going from sitting to standing, reaching over his body down to pick up objects and then throwing them to me. I am just glad he did so much better than he had the last few days. Next week they are going to try a reward system where he earns a token for each therapy session he is actively participating in. He can then use the tokens to buy small toys. In the pictures he is walking on the parallel bars, putting a puzzle together, doing aqua therapy, and standing playing a tambourine. They had their meeting today and want to keep Luke for another two to three weeks. Please pray he makes amazing progress these next few weeks. "Never will I leave you; never will I forsake you." (Hebrews 13:5) Thanks so much for your continued prayers. Believe! Have a great July 4th weekend. A special thanks to everyone that has ever served in the military for serving so we can all have the freedom we celebrate this weekend. God Bless you all!

Need some motivation!

Well...the serial casting did not happen...turns out they had the wrong patient. I will just leave it at that. If you have been following Luke for any time, you know this is par for the course for us. They did however, come and fit him for new Afo's. These will help him be able to walk a little better.

Luke is having a hard time staying motivated for his therapies. He has learned to tell them no or pretend like he is asleep so he does not have to work. Yesterday they had him trying to walk on the parallel bars. He did it great the first time, then she let him walk backwards to get back. So, he learned then if he took a few steps forward the next time, then he could go back and be at the end. So that was what he did. So, our prayer request is to pray for Luke to get motivated to work. I guess I shouldn't have mentioned his stubborn side earlier this week because that is definetly coming thru:) Believe!

My words…will come true at the proper time.” (Luke 1:20)
“What the Lord has said…will be accomplished!” (Luke 1:45)

“The Lord is sure to accomplish those things
A loving heart has waited long to see;
Those words will be fulfilled to which she clings,
Because her God has promised faithfully;
And, knowing Him, she ne’er can doubt His Word;
He speaks and it is done. The mighty Lord! "