Thursday, October 11, 2007

Busy, Busy, Busy we are probably too BUSY!

We have lots of exciting news to share today. Last Friday Luke began Vital Stim therapy, which is swallow therapy to help him eat through his mouth once again. His speech therapist said that she heard a good swallow and thinks that we will have great success with this therapy. I'm finding that he doesn't like putting things in his mouth, but once he tastes the food he chews and swallows it. One of the nice things about this therapy is that I don't have to leave the home for another appt. the therapist comes twice a week to our home. I'm so excited about Luke eating orally once again but am also a bit apprehensive about how time consuming feeding him will be. For the last 3 years all we've had to do is hook up a syringe to his g-tube and pour in his food, now I will have to feed him like a baby. I'm comforted to know that this won't last forever, I know one day he will be feeding himself.

Luke also began seeing a Rolfer massager on Monday. I found about Rolfing through Abbie's mom Tiffany, she was so impressed with how Abbie was responding that I decided if I could find a Rolfer in the area we would try it out. I'm excited to say that Luke responded great, he would let Matt know when he was uncomfortable and Matt took it real slow. But the greatest thing that came out of the day was that afterward I put Luke into the Hyperbaric chamber, which happens to be in the same building and Luke was very verbal the whole time he was in the chamber, he also seemed to be more alert, I think that he was actually seeing the TV for the first time. The TV is real high so I don't think his sight was good enough in the past, though this time he seemed to really be looking at the picture.

Luke came home with a new pair of ankle/foot orthodics on Monday. His feet have begun to get worse so we decided it was time to get a new pair. He was also fitted for a new pair of knee orthodics, though the OT thought he needed to be re casted as the pair that they casted last week did not seem to give enough bend. She realized that next time they cast I will need to hold Luke on my lap so that they can get better bend. Luke bends his knees so much better when he is sitting up. They are hoping that the knee orthodics will help him during the night when he doesn't have as much muscle tone going on, therefore while he is relaxed we hope to train his leg to bend more.

I praise the Lord that our insurance is covering the cost of the Vital Stim therapy, I just wish they would pay for his massage therapy and HBOT treatments. I know that some moms have fought their insurance companies to pay for these treatments and a few of them have won. I just wish I had more time in my day to be able to fight our Insurance Company. I'm very thankful for that recent donation from the Zander Fund as it is making the Rolfing and HBOT treatments doable. I really wanted to take Luke to Dallas, TX, but am realizing that we have to spend our money wisely. I know so many people with special needs children have fund raisers and have thought seriously about doing one, but once again time is a huge issue for me right now. I realize that God will supply what He wants for Luke, I just have to continue to trust Him at all times.

I know that I mentioned in my last post that I was hoping that life would slow down a bit this year. This has not been the case. I struggle at times knowing that I need to stay home more often, but also realize that Luke's needs along with the rest of my children are my priority right now. I cracked a tooth and had to make two visits to the Dentist office, along with Amy's glasses broke a long time ago and needed to be replaced. Natalie had a hole in her ear from tubes when she was 2 years old, the Dr. had told us to bring her back about 3 years ago and I finally got her into the ENT Dr., good news the hole is completely gone, this is an answer to prayer. I also took Isaiah in for a eye check up, good news they are fine. Add to all the medical appts, Luke's PT/OT, massage, HBOT, orthodic fittings appts., Natalie's piano lessons, Amy's voice lessons, the YMCA twice a week, home school choir once a week and you can see what I mean by life not slowing down. I'm so thankful that God is my strength!

I probably could go on, but realize if you are still reading this blog you are amazing, as it is so long already. Thank you for your continued prayers. I say it often but this journey we are on is much easier because of your faithfulness to remember us in your prayers.

Love in Christ,
Luke's Mommy Sue


Anonymous said...

Great news on Luke's progress! Know I will continue to faithfully follow your progress via this blog. Give Gordy a hug for me...Bob

Anonymous said...

It's so exciting to hear about the vital stim therapy - I know that's a huge answer to prayer; and so much other great news, too! We continue to keep you all in prayer, and will also pray that you will have peace and rest in the midst of the busyness :)


Kehau and Brandon said...

Thank you for your comment. I sometimes read your blog also to see Luke's progress and to get insight from other mom's and families going through the same thing. Of course you can put a link to Caleb's sight on yours. I'd like to do the same. I also want to homeschool our kids. (Well right now we only have Caleb and his little brother who is almost one) I thought it might be quite difficult while Caleb is still in his healing process but after reading that you do it and have more kids...I think I'm sold and ready to tackle! We will also keep Luke in our prayers.

dr_bristow said...

That's wonderful to hear that Luke is learning to eat again! It sounds like his new therapies are helping a lot. Your family sounds like mine when I was growing up (my parents homeschooled us) except that you are even busier! I'll be pray for rest for you and God's blessing and healing for Luke.
Love, Alane

Anonymous said...

So nice to hear that Luke is now able to eat ... I work for the company that brought this therapy to market ... I read posts like this very often and am vey pleased!