Sorry the pictures didn't turn out better, we should have made sure we had a few good shots. Luke has been doing pretty good lately, his days are good, his nights still a challenge. I can not remember the last time we had a full night of sleep, I know that I've already shared that with you, but it still continues to be a challenge. Luke's appointment with his pulmonologist has been re-scheduled 3 times now; his Pulmonologist has been dealing with the death of his mom, please say a prayer that God will comfort Dr. R during this time of grieving the loss of his mom. I hope that when we do see him in two weeks that perhaps he will be able to find some answers to helping Luke do better at night.
Luke has a Baclafen pump trial set up for this Wednesday morning, we have to have him at the hospital at 6 am for the sedation process, he will then have Baclafen injected into his spinal cord. Baclafen is a muscle relaxant, he currently takes 20 milligrams 3 times a day, but we are not able to get enough into him to really loosen him up because it causes him to get very tired. The pump, which is a little bit smaller than a small can of tuna, is put into the body, it is filled with baclafen, a small catheter is put directly into the spine, which is then able to bypass the brain, making the Baclafen to do the job of helping to relax his muscle with out the negative side effects. We did this trial once before, not seeing much changes in his tone issues, the Dr. thinks that we could of doubled the dose they gave him last time, therefore we are going to try it one more time to see if the double dose does him more good. Please be praying for us to have wisdom in this whole process, the thought of putting a foreign object into Luke's body is unsettling to say the least but I know of so many kids who have a pump and it has made them so much more comfortable and able to bend better. Also be praying for safety for Luke while is sedated, it's always a bit scary to put him under for any amount of time.
On to some other news, this past weekend was filled with Birthday parties. We had a surprise birthday party for Lance, who is Amy's boyfriend on Saturday night. It was a lot of fun, very loud and crazy as we had 35 people over to help us celebrate. We had a taco feed, just to give you a small glimpse into how much food it took to feed all those people, we cooked up 9 pounds of taco meat, we still have leftovers, cut up two heads of lettuce, 4 cans of olives, a box of tomato's, had Lance's soon to be step mom make up some delicious homemade salsa, Yoli made a chocolate cake and a pineapple upside down cake add to that lots of ice cream and other ingredients, along with soda's for everyone and you have a whole lot of food.
Then on Sunday we celebrated my Mom's 75th Birthday, thankfully mom decided ahead of time that she wanted to go out to eat for her birthday. I am so blessed to have such a wonderful mom, she faithfully prays for Luke and our family, she is a wonderful example of a Godly woman, who sacrificially gives of her time and herself to bless our whole family.
I was asked to join the Family Advocacy Council at Mary Bridge Hospital, tonight was my first meeting. I'm excited to think that perhaps I can help make Mary Bridge a better hospital, though I already think the staff does a good job there. My prayer has always been for God to use me where he chooses to lead me. There have been many times that I have wondered why God has allowed Luke to be admitted into the Hospital so many times, I now realize that perhaps God was allowing us to go through those experiences so that we could perhaps help those that come behind us, at least I hope so.
Oh my goodness, another really long post, I really will try to keep my next post shorter.
Love in Christ,
Luke’s Mommy Sue
PS Please be sure to keep Annie’s family in your prayers, her memorial service will be held this Saturday.