Saturday, September 23, 2006

Here's an update on Luke's Dr.'s appointments this past week

On Monday I took Luke in to see his pulmonologist and gastronologist, I had put off these appts. for too long. On the one hand it was very encouraging and then on the other hand it was a bit discouraging. I guess we continue to ride this long bumpy roller coaster ride. Let me explain a bit more, his pulmonologist said that he seemed to be doing okay, he was a bit course when he listened to his lungs, which lately has not been the case. He told me that he doesn't need to come back for 6 to 12 months which was good news and he did not mention anything about putting the trache back in which was great to not hear. He did say that he thought we should see the dietician as his weight gain has not been so good since his last visit. This really bummed me since I know that he had gained at least 3 pounds over the summer, but because of all his throwing up for awhile he had lost 2 of those pounds. I was happy to tell him I was seeing the dietician and gastronologist after his appt.

I went on up to his next appt with his gastronologist and was told the dietician was not in, she had called in sick that morning so I was not able to see her. The gastronologist didn't have much to say, didn't even comment about us taking him off of his previcad, which had made me a bit nervous wondering what he would say, he examed him and said that he didn't think he needed to come in again for 12 months. He said that he would set up an appointment for Luke to have another swallow gram done to see if we can start feeding him by mouth, this was good news. One of the best part of these appts. was being able to say that Luke is off all Medications, one of the nurses thought it was a mistake and asked me if this was right as she was reading his record, it was great to say it was right. They don't see many kids like Luke with no medications.

So you might be saying Sue everything you've said so far has been good news, where is the bad news. I guess I left there thinking about the fact that they didn't want to see Luke back for a year, this means that they are thinking that there will not be any changes to him as is normal with his type of brain injury. I know that God is mighty and can change things quickly, but as we've experienced this past 2 years God has choosen to take us down a slower road of recover. Don't get me wrong I'm very happy that Luke continues to make progress, it's just some days it seems to be taking so very long. Yesterday was a bit difficult as Luke woke up with a fever and then threw up after his first feeding. I was crying out to God to touch him and Ezekiel who is my little prayer warrior said, "Mommy, lets prayer for Luke to get better today, maybe this is the day he will start to walk and talk again." Oh the faith of a child. Well I'm happy to say that God did answer our prayers, he began to feel better and last night when I put him to bed his oxygen levels where at 99 and his heart rate was very good again. He has been doing great without being on oxygen for quite a few nights now, which is a great answer to prayer. Though this is not the case tonight, he is back on a bit of oxygen tonight, I guess he's still not at 100% yet.

Just to let you know we began home schooling on Monday and this week has been a good week, we are getting back into a good schedule. I purposefully made Luke's PT and Natalie's Piano lesson on the same day at the same time, her teacher is flexible with me dropping her off a bit early, I'm hoping this will cut down on being out the house so often. My sister Cindy has been coming over each morning to help with Luke's feeding and doing some of his program with him, which has been very helpful. Joanne asked about his program, it is a program put together by a Neurodevelopmentalist, that includes patterning exercises, tastes of foods to help with his taste buds coming back to life again, special pin hole glasses to help him see better, lots of stimulation with toys and activities, a listening program we haven't got started yet and some other activities to help his brain reconnent. If you want more information you can e-mail me, as you can see we've put our e-mail address on the side of the blog so that any of you can e-mail us, we always enjoy hearing from you.

Here's a scripture that has really encouraged me this week, it is Hebrews 11:1 Now faith is the substance of things hoped for, the evidence of things not seen. I had memorized this verse many years ago and God gently reminded me that though I may not see His answer today, I still need to believe that it is coming. I hope that you have your faith renewed today and don't ever stop believing in your miracle, with God nothing is impossible!

Love in Christ,
Luke's Mommy Sue


annie said...

I felt your experiences at the dr. appointments while reading about them. It isn't that there is "bad" news... just that it is a reminder of where we are right now. I think at home I am able to look at all my scriptures and meditate on God's word and promises so much that going into the 'world' is sometimes a slap in the face of a different reality... That may not make sense. I focus on believing God before believing what my physical eyes see. It's just easier at home. I will continue to lift Luke up in prayer and pray that today is the day that he does walk and talk!
In Him,

dr_bristow said...

Dear Sue,
Thank you for the encouragement to continue trusting God when his answer seems slow in coming.
I am praying for Luke's healing, and trusting God to bring it about in his timing.
I was reminded of the song we sang at church last night "Blessed be your give and take away, my heart will choose to say, Lord blessed be your name." Singing that song just made me realize, God is always in control, He is always on his throne, no matter how our lives may seem to be going...and you have been a wonderful example to me of someone who, even in difficult times, still has faith in Christ and can still say "Blessed be the name of the Lord!"
God bless you,
Alane Bristow

Anonymous said...

Sue & family,
I have been reading Hebrews 11 too, only using in The New Living Translation. It's such an encouragement to read of people who believed God was true to His promises.
Standing with you,

Anonymous said...

There is a wideness in God's mercy,
Like the wideness of the sea;
There is a kindness in His justice,
Which is more than liberty.

There is a welcome for the sinner,
And more graces for the good;
There is mercy with the Savior;
There is healing in His blood.

For the love of God is broader
Than the measure of man's mind;
And the heart of the Eternal,
Is most wonderfully kind.

If our love were but more simple
We should take Him at His word;
And our lives would be all sunshine,
In the sweetness of our Lord.

Be thankful for God's mercies,
they are new every morning.

Carmichael Family said...

God bless you, Sue. I am encouraged to hear that Luke received good reports from both his doctor appointments, but I can sense how you would feel about them not believing there would be a change in his condition. We are praying right along with you and trusting God for Luke's complete healing, even if it is a little bit at a time. Thank you for taking the time to keep us updated, I'm always excited when I click on Luke's site and a new update is posted.
In Christ,
Catherine and family

annie said...

Isabelle's knees do bend perfectly. I did have botox injected into her feet about a year ago for an ankle that was giving her problems while standing. She didn't need it in her knees. I thought the botox was really helpful and the phenol was probably even better. (they used a combo) Anyway, the answer is YES. I feel like I am on a teeter totter many days and really pray that I am not trying to manage Izzy's recovery or to force it but yet to follow the leads I am given and do what I should on my end while trusting God at the same time. Matt said just yesterday that if we are doing three hours of patterning, we should spend that much time in God's word because it is just as important in her recovery and healing. I think as mothers we second guess ourselves a lot. I try to pray before doing anything new and then I try to listen and let myself be led rather than just rushing into it.
I hope you are having a blessed week and that Luke is doing GREAT!

Teena said...

Oh Sue, it was so good to read this blog entry tonight. I think of you all very often. My computer still acts up and lots of nights I get on... blog a little and get off. I am on dial up but even slower than that. I am still praying.... even when I do not stop by.

I have been very emotional lately. The least little thing makes me cry. I am 45 today. It is in the wee hours of the morning (3oth). I need to totally lay everything at the feet of Jesus. I understand but in a different way... how you can be happy/rejoicing but sad/discouraged too!

I love my children being home with me~ I am so very thankful God has allowed me to be the mother of children....

YOU have been and continue to be a blessing to me~ I keep missing your calls but we will talk soon.

remember I love ya~ and we all love all of you. Could you give Luke... a big hug from his buddies Wyatt & Wesley?

YOUR GA friends,
Billy, Teena, Michael, Mandi, Dakota, Alyssa, Wyatt & Wesley

Anonymous said...

Dear Searles family,
I just wanted to write and tell you that even though we don't blog much, we pray often! As a matter of fact Sami (our little one who is the same age as Luke) has been specifically asking for Prayer for Luke. 3 times in the last 24 hours she has brought it up and told the whole story in her ability. He is really on her heart. God is moving and we are agreeing together with you that it will be speedy! Amen.

Our love to you,
The Turners

Julie in NC said...

Hello my long lost friend! I am sorry that I have not been as faithful to let you know that I am praying. You are very much in my prayers. It is good to hear that Luke is doing well but I could understand your feelings about (They) not wanting to see him for a year. We will just keep praying for God to heal him! I love you guys.

Blessings,Shane, Julie and Children