Thursday, February 12, 2009

More Answers about Jackson

It has been another crazy week, and God has been so good to reveal so much to us. God gave us a new coordinator and speech therapist and I think they might both be the best you can possibly have. My new coordinator is incredible and Jackson has progressed so much with her weekly (she has been coming for 3 weeks now). She has him saying "ball" so clearly now. My new speech therapist is an expert in oral motor issues and hardly has any openings, but she can meet with us on Tuesdays at 9:15 am which is perfect because Jackson is so alert then. We get all these services free through Baby Net (Bright Star), but because of the budget cuts if we had not gotten Jackson in when we did, we might not have been able to get these services.

Here is a run down (I have updated many of you through facebook)
  • Tuesday morning we all went to see an ENT doctor very early. We have been at the doctors a lot recently. He said he would clip his tongue frenulum but if it was his son he would not put him through it and that there was a less than 5 percent chance it would help with his speech at all. He can stick out his tongue out a little past his teeth. I was very frustrated with the visit and I am not going to have the procedure done with a doctor who has no hope.
  • On wednesday our new speech therapist came for the first time. She did a complete oral motor examination and evaluation. She said that is tongue was 90-95 % WEAK! This seems pretty extreme. She also said his lips were 30% weak. She said it all ties in to the tongue and it really hurts that he has a short frenulum. She watched him eat and said that he does not have much movement of his tongue when he eats, and therefore, has to work twice as hard to get the food down. Ah! No wonder eating time is so hard with him.
  • I really think that Jackson has Charlie's recessive gene of a weak tongue (Charlie cannot curl his tongue to make a hot dog shape or stick it out very far) combined with a short frenulum. We will start Beckman Oral Motor exercises next week and a Z-Vib It is going to be hard because he hates when we go messing in his mouth...he really does not understand why we are putting our hands in his mouth.
  • We have had three doctors and a speech therapist tell us he has a short frenulum. Therefore, we are going to get a second opinion and proceed with getting it clipped in the next couple of months. Pray that it does not take forever to get in with another doctor (the doctor we are being recommended to has had success with improved speech after this procedure). One of my doctors called today and she said she has always seen at least some improvement in speech after this procedure. Even if it does not do much with his speech, it will at least help with his eating and give him a much wider range of motion with his tongue. Him having a weak tongue does explain why sometimes he can say words perfectly and other times they comes out crazy. No matter what, we will need to be in therapy for a while to strengthen his tongue. He is learning so much right now, he just cannot verbalize what he is learning so I can understand what he is saying. Some kids with short frenulums push through and still use their tongue and are able to speak fine, but Jackson is not one of them.
  • Keep praying for Jackson. I think God has big plans for him and I have always felt that there is a demonic attack against him from day one. I still cannot believe he had a major fire in his room. I cannot wait to see how God is going to use Jackson to reach people for Christ. Demons might when some battles here, but we know that God wins the war. Praise God! This whole ordeal has made all of us stronger and our prayer lives where it should be. We are so thankful to have such a loving and amazing son.
Love to hear your feedback and any experience you have had with a child having a weak tongue, short frenulum, or needing speech therapy.