Tuesday, November 30, 2010

New Adventures

i feel like i need to put some sort of disclaimer on this post...
it may be a little scatter brained because the information that i am about to share is still pretty new to me and I'm not sure how to put it all in words. if i were a writer it may flow and sound better. so here goes.

little guy has be going to speech therapy for over a year now. as some of you know we have struggled with some developmental delays with him due to his pre-maturity. all fixable though right. well a year later, he is speaking better than the year before but not nearly as well as a three year old should. when we first started speech therapy i mentioned to the therapists about having his ears checked for hearing loss. then a week or two would pass and i would forget to follow up and here we are a year later and I'm asking the same question and the therapist gets me connected with an audiologist to test his hearing.

now if you know little guy you know that having him sit still for anything is a challenge. at the beginning of October was his first test. he did so well. and by well i mean that he was cooperated very well and seemed to have a good time. the audiologist that he saw was great. once all the testing was over she let me know that it was somewhat inconclusive because it seemed like he had negative pressure in his ears. (fluid, possibly) we went to see the doc that day and he said that his ears were clear. we were then set up with the audiologist to have his ears checked again the next month. again little guy was wonderful. the did such a good job, i was just amazed at how well he was doing paying attention. when the testing was over she went over the results and they weren't what we wanted to hear. little guy has permanent nerve damage in both ears. it slopes from moderate to severe. meaning that he can't hear high pitch noises like constants. so if you ever have the privilege to having a conversation with him he talks in a lot of vowels and sounds. it is pretty amazing that we have been able to understand him so far. i feel blessed with the little amount we do have with communication. basically he would need hearing aids for the rest of his life.

we had lots of questions about all of this and wanted answers. my husband put it really well that everything with little guy has been fixes in his life, nothing permanent, so we were struggling with the permanency of all of this.

how? why?
well how...it could be a number of things, all of which he had. early birth and low birth weight (you may remember he was 2lbs 14oz), ventilator, photo therapy lights, antibiotics, blood transfusion.

after finding out this, i called my hubby to let him know. he immediately wanted to meet with the audiologist (which she said he could do). i just don't think that she was prepared for him to ask her to do all the same tests that she did on little guy. she was great and did them on him to show him what was going on. then she explained all of little guys results. the next day we had a apt with his doc to find out what he recommended. he sent us to an ENT who basically let us know that same thing that the audiologist did. that he need to get hearing aids and that he needed to get them ASAP. he recommended the same place that the audiologist did for getting them.

that brings us to yesterday when we had an apt with another audiologist who re-tested little guy, just to make sure and came up with the same results (again he did so well and cooperated and my husband was able to be there for this apt and he got to see just how well he does) and fitted him with the hearing aids. of course they are kid friendly so she wanted us to pick something cool and fun. little guys still wasn't sure what was going so my husband decided that since he likes tigger the molds that go in his ear would be black and orange and the the aid that goes around his ear is going to be black and silver. he's going to have tigger ears. :) (he love tigger and I'd say that was pretty kid friendly) hopefully the next time he needs them he can have a opinion in choosing them and deciding what the wants and likes.

so that was a lot of information to put out there. being a detailed person i hope i covered all of them. i can tend to go over board with details so i also hope i covered everything.

i was explaining all of this to someone and say that even though this was permanent that with medical breakthroughs maybe one day there will be another fix for this, a cure. and my husband reminded me to leave room for God. as humans we sometime forget to leave room for God to work. He can and He will. it may be to heal little guy or the hearing aids may be His form of healing, our answers to his speech delay. i know that He has great, wonderful and amazing things in store for little guy. this new adventure is going to stretch us for sure.


  1. Thanks for sharing all of this. We have been going through some similar issues with Sabriel this year. She will be 3 in two weeks and her speech is pretty severely delayed. Her hearing was the first thing her pediatrician had her get checked. We are thankful that her hearing seems perfect (except for some occassional fluid). We're having to pursue more intensive speech therapy for her, but are having to wait until the new year because of insurance issues.

    It's frustrating and heartbreaking to watch your kid struggle. You guys are amazing parents and I love the encouragement & wisdom that you shared. We'll be praying for little Sawyer and both of you guys.

  2. thanks girl
    i appreicaite the prayers and encouragement and thank you so much for sharing what is going on your sabriel. it's good to have a support system, especailly of people who have similar experiances. not that i know anything medically with ears and all but have they thought of tubes for sabriel since her hearing is good?

  3. Well-written post, Mama! I should have checked your blog b/c I had just sent you an email asking how you guys were. Can't wait to see his Tigger ears!

  4. Anonymous3:34 AM

    Yes, we will leave room for God. Nothing is too difficult for Him. I know that Sawyer is a gift from God and He is going to take care of him. I hate that ya'll are having to deal with this, and I'm praying for you! My prayer partners are praying too. Love and More Love!!! Joanie

  5. No doubt in my mind that He has an amazing plan for little guy AND little guy is positioned in your lives to deepen your trust in Him. Thanks for sharing ... praying for you right now. P.S. The Tigger ears sound perfect!

  6. thanks girl
    strange feelings of excitement and (well i'm not to sure what the other feeling is) in getting them.

  7. Anonymous12:39 PM

    wow Jen - we didnt know you guys were dealing with all this but I agree - God certainly does have a wonderful plan for your little man! His is such a joy and always smiling! I am glad you have gotten his hearing aids in. We will be praying for you guys as you adjust. I cant wait to hear all the progress he is going to make in speech now!!!
    Sarah Lastrapes

  8. thanks sarah
    i will be sure to keep the blog updated on how it all goes.

  9. Jenn,

    WOW! I didn't know that you were going through all of this. We are going through similar struggles but not with hearing. We found out a couple of months ago that Josiah has Sensory Integration Dysfunction. We found out over Thanksgiving break when he was tested by a Psych that he has SID along with ADHD and Developmental Coordination Disorder (fancy way to say low/poor muscle tone). The ADHD looks more profound because of the sensory issues. He started Occupational Therapy a couple of months ago and we saw alight improvement. However, they thought it best to put him on meds for ADHD. Even though he is 4yr, he is already starting to have social problems, etc. and the meds would curtail these a bit because his behavior would be a little more controlled. I was beside myself thinking I had to put him on med at 4yrs. But, the doctors I was dealing were highly rec. and Christians. Graham and I let their opinion be the confirmation we needed as we were so confused as to what to do. We are on our 2nd week of ADHD meds and continuing OT. I cannot tell you the difference it has made in his life at school and our lives at home. Sometimes the scariest step is the first one (the one out of the boat and onto the water) but Jesus was and is always there to help us along the way and to build our faith. Sawyer and Josiah will have amazing testimonies- they both start from the womb! Chin up, my friend! This is the best thing you will probably ever do for Sawyer at this time in his life. You're opening up the world to him in a different light! Love ya'- Amanda