Tuesday, March 27, 2012

Luke turned nine and I wish I could say all is fine, but no here is: The Good, The Bad and The Ugly Truth about Luke at this time

Let me start with the good news, Luke turned nine on March 10th. Luke's birthday is a very bittersweet day, so so glad that he is here with us still, so so sad that he has not made more progress this past year. The challenge of having a birthday party for a little boy that should be excited about opening his presents that he will want to play with, eating his cake and ice cream or just the simple task of blowing out his candles are realities that have not happened these past 8 birthdays. We are blessed by the fact that his smiles told us that he was enjoying himself, that day:-)

It's hard knowing where to begin to share with you all the bad news we've received about Luke lately. At his GI appointment we found out that he's still under 50 pounds, at that size he's not even registering on the growth charts. The good news that day is that the Dr. did say that Luke is looking good, just wants to see him gain some weight, more good news is that fact that he's easier to carry at his current weight, but I realize that he really does need to gain some weight, which might be bad news for our backs.

My goal lately is to get Luke into the HBOT chamber as often as I can, the challenge has been that I've already had to cancel 3 times because he's been too congested to go in this past week.

More bad news is the fact that we still are not getting the little seizures he's having under control, the medication he's been on has not been working and I'm reluctant to increase the dose as it causes Luke to get "junky" congested each time I give him that medicine. We go back to see the Neurologist on May 1st, to discuss other options.

The Ugly news was hearing the results from the recent MRI he had done on his knees. His Ortho Dr. called me the next day saying that his knees don't look good, in fact his knee caps are no longer on the top of his legs they have moved to the outsides of where they should be, he also no longer has a good curve in the cartilage. This news boils down to the fact that the Dr. wants Luke to do another Baclafen pump trial to see if we can loosen him up before she does surgery on his knees. The big bummer is the soonest we can get in to do a pump trial is May 8th, that means waiting another month to do anything to help his legs.

Some great news is that Amy is marrying the man of her dreams, yep Lance asked her to marry him and she said yes:-) So that means this summer is going to be a very busy time with 2 grand babies coming in July and then a wedding in August. Exciting times!!!

I wish that somehow they could get Luke scheduled sooner for the pump trial so that we can get the ball rolling on his surgeries. Not that I want Luke to have more surgeries, in fact the thought of more surgeries literally makes me feel sick to my stomach. But the plain fact is that if we don't get his legs bending we are soon not going to be able to take Luke out anymore because he will be unable to ride in our van. As it is right now getting him in and out of his bed, the bathtub and our van is extremely challenging to say the least and each day we do nothing about his legs make it more of a challenge.

I don't mind sounding desperate when I ask you all to continue to pray for Luke, PLEASE pray for his seizures to stop, PLEASE pray for his legs to loosen up and bend, PLEASE pray he will start to put a few pounds, PLEASE pray that Gordy and I will continue to stay strong and that we won't lose hope, PLEASE pray we will continue to hear God's voice when it comes to making all the difficult decisions we have to make concerning the upcoming surgeries that Luke has had to endure. PLEASE pray . . .

Love in Christ,
Luke's Mommy Sue

Just thought you might like to know that Gordy and I did have a nice time on our break away last month. We had a great time exploring some new beaches, a lighthouse, a waterfall and a octopus tree that we had never seen before all on the Oregon coast near to Tillamook. Though it was a bit stressful at times, because Luke got sick the day we left and each day we wondered if we should go home, but we decided that we HAD to renew our batteries if we were going to have the strength to continue on this journey we've been on now for so very long.

1 comment:

kelly said...

Just prayed for your specific needs. My heart just breaks for your situation...and all that Luke and you must endure. I will keep you in my prayers.