Titus received his hearing aids yesterday. This will probably bring his hearing up from profoundly deaf to severely deaf, but will stimulate his hearing for the time leading up to the cochlear implants. Titus can tell a difference - he is really looking around for the noise and was even imitating some sounds yesterday. What a thrill it is to see this. Now, keeping them in will be a challenge - we do have both of them tethered together on string that clips to his clothing, but the aid has to make a good seal in his ear - and if not, they squeal.
Titus also had a follow-up visit with the pulmonologist yesterday about his sleep test. It appears that Titus is waking up multiple times in the night and not going into deep REM sleep for long periods of time. Since this could affect his growth/development, they are looking at a new breathing machine at night that will assist his sleep.
After that dr. visit, Titus had a follow-up appointment with the ENT for a genetic test - and as usual, they decided to do blood work instead of a cheek swab, so Becky will be taking Titus down to Children's Hospital for the blood work today. And, the doctor has a little concern about the back of Titus head (he's developed a little bit of a ridge) so we are going back to the neurosurgeon to make sure his skull is fusing correctly.
At the same time, Cade had a visit with the ENT. Cade lost his hearing in his right ear after he was born. Cade spent several weeks in the hospital in Korea with CMV when he was a few months old. We want to make sure his hearing is continuing to remain strong in his left ear and there is no more damage or continuing loss in his right ear. Cade did great on his sound test and they are going to look at a hearing aid for his one ear - along with doing a MRI to better define the reason for losing his hearing after he was born (The ENT is not convicned Cade had CMV).
There was a time if I had heard all that information in one day, I would have been overwhelmed. But, having 3 doctors visits (plus a therapy visit that I didn't mention) in one day, getting news about additional therapy, additional treatments, etc is just par for the course. As I was driving home last night after work, I realized what an incredible journey this is. It's not one we were expecting, but one that is teaching us so much about God's provision, God's plan, and faith. And the old gospel song came to me:
Why should I feel discouraged?
Why should the shadows come?
Why should my heart be lonely
And long for heaven and home?
When Jesus is my portion
My constant friend is He
His eye is on the Sparrow and I know he watches me.
"Let not your heart be troubled"
His tender word I hear
And resting on his goodness
I lose my doubts and fears.
Though by the path he leadeth
But one step I may see
His eye is on the Sparrow and I know he watches me.
I sing because I'm happy.
I sing because I'm free.
His eye is on the sparrow,
And I know He watches me.
Showing posts with label Hearing Aids. Show all posts
Showing posts with label Hearing Aids. Show all posts
Friday, August 22, 2008
Monday, July 14, 2008
8 Months Old Today
Titus Beck is 8 months old today. Any my little buddy celebrated by sleeping 5 hours last night without oxygen! Titus has gotten quite good about pulling his canula out of his nose. On Friday, he not only pulled it out of his nose, but also ripped off the band-aid-like adhesives that help hold it on his face. Last night, we went to check on him before heading to bed and his oxygen sats were at 100%. I then checked his face and sure enough, his canula was below his chin. We decided to wait awhile and test how long he would go since he was in a deep sleep. And, he went 5 hours. I checked him on through-out the night and his sats were still 100% - so this is great progress.
He continues to do better about sleeping through the night - no longer waking at 4-5am for playtime. And that means, we are all getting more sleep. What a blessing!
In the last few weeks, we've had several important things occur. Titus has been fitted for hearing aids and should be getting those in the next few weeks. This is just part of the therapy needed as we progress toward the cochlear implants. It may/may not make much of a difference in what he can actually hear, but it's part of the process.
We have been approved for Medically Dependent Children's Program (MDCP) in the state of Texas. But there are still several steps that have to be completed. Titus does have Medicaid coverage as of June 4, but to be finally approved for MDCP, he will need to spend the night at a state-approved nursing home. (Actually, he has to check in by 5pm and can check out at midnight). But for those things to happen, there is a whole lot more of paperwork to complete and fill out. We are working through that this week. MDCP will allocate funds toward at-home nursing care for Titus along with other benefits. And Medicaid will pay for therapy whereas my insurance only paid for 20 therapy visits (already exhausted).
As we look back over the last 8 months, we see how God has graciously provided for us and Titus. For example, we have 2 incredible women who have been donating breast milk for Titus. We are able to mix that with formula for our feeds. We believe that has helped him tremendously. In the last 8 months, we've only purchased formula twice since others have donated boxes/cans of the special formula he needs.
But moreover, we've been given the opportunity to be a witness. Numerous times, Becky has been at the doctor's office or out with Titus and people come up and ask "how do you do it". Everyone seems to be amazed that we can function with Titus needs, and keep up with 4 other boys, homeschool, teach parenting classes, and still have fun. The question comes from other parents, from medical professionals, from friends - and the answer is always the same. If we trust that God is sufficient and we trust in His plan, then who am I to challenge/question that? If God has stated he will supply all my needs, who am I to be demanding? If God has stated that Titus is "wonderfully and fearfully made", then who am I to say that he's not? If God has stated "fear not", then who am I to stand here afraid of the unknown?
That doesn't mean we haven't been sad, it doesn't mean we haven't shed numerous tears, it doesn't mean we haven't cried out to God, it doesn't mean that there are days we've been depressed. But it does mean that we have learned (and are still learning) to trust in God's plan and to continue to let our light shine in a dark world.
2 Corinthians 4 has always been one of my favorite chapters. And verse 16-18 states "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
Please pray for these things:
He continues to do better about sleeping through the night - no longer waking at 4-5am for playtime. And that means, we are all getting more sleep. What a blessing!
In the last few weeks, we've had several important things occur. Titus has been fitted for hearing aids and should be getting those in the next few weeks. This is just part of the therapy needed as we progress toward the cochlear implants. It may/may not make much of a difference in what he can actually hear, but it's part of the process.
We have been approved for Medically Dependent Children's Program (MDCP) in the state of Texas. But there are still several steps that have to be completed. Titus does have Medicaid coverage as of June 4, but to be finally approved for MDCP, he will need to spend the night at a state-approved nursing home. (Actually, he has to check in by 5pm and can check out at midnight). But for those things to happen, there is a whole lot more of paperwork to complete and fill out. We are working through that this week. MDCP will allocate funds toward at-home nursing care for Titus along with other benefits. And Medicaid will pay for therapy whereas my insurance only paid for 20 therapy visits (already exhausted).
As we look back over the last 8 months, we see how God has graciously provided for us and Titus. For example, we have 2 incredible women who have been donating breast milk for Titus. We are able to mix that with formula for our feeds. We believe that has helped him tremendously. In the last 8 months, we've only purchased formula twice since others have donated boxes/cans of the special formula he needs.
But moreover, we've been given the opportunity to be a witness. Numerous times, Becky has been at the doctor's office or out with Titus and people come up and ask "how do you do it". Everyone seems to be amazed that we can function with Titus needs, and keep up with 4 other boys, homeschool, teach parenting classes, and still have fun. The question comes from other parents, from medical professionals, from friends - and the answer is always the same. If we trust that God is sufficient and we trust in His plan, then who am I to challenge/question that? If God has stated he will supply all my needs, who am I to be demanding? If God has stated that Titus is "wonderfully and fearfully made", then who am I to say that he's not? If God has stated "fear not", then who am I to stand here afraid of the unknown?
That doesn't mean we haven't been sad, it doesn't mean we haven't shed numerous tears, it doesn't mean we haven't cried out to God, it doesn't mean that there are days we've been depressed. But it does mean that we have learned (and are still learning) to trust in God's plan and to continue to let our light shine in a dark world.
2 Corinthians 4 has always been one of my favorite chapters. And verse 16-18 states "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
Please pray for these things:
- Paperwork for MDCP will be completed and accurate
- Nursing Home visit can be scheduled and completed soon
- Therapy appointments can be scheduled and re-started soon
- Titus breathing will continue to improve so we can get off oxygen
- Aidan and Noah have Fine Arts camp next week - both have speaking parts and are incredibly excited.
- Family vacation on August 28 - Sept 3 to Family Camp in Indianna
Praise for these items
- July is our month of birthdays - Tucker turned 4, Noah turned 10, and Paul turned "old". (Ok - Paul turned 47)
- Becky and Paul celebrate 14 years of marriage on the 16th
- Aidan and Noah (along with their cousin Nathan as sponsor) had a great time at Journey Camp last week.
We've stated before, but we want to repeat how incredibly blest and thankful we are for friends who continue to lift us up in prayer on a daily basis. We are so humbled.
Blessings,
Paul & Becky
Wednesday, July 9, 2008
It's Quiet - Very, Very Quiet
Aidan and Noah are at Journey Camp with the church this week and Tucker and Cade went camping with Meemaw and Peepaw. Let's just say - it's very, very quiet around here!!!! And to top it off, Titus slept all night last night - so Becky and I feel . . . well, we don't know how we feel. We're rested, but it's just plain weird without all our boys here and eerily quiet.
Our nephew, Nathan, is at camp as a sponsor with Aidan and Noah. He called yesterday to say everyone was having a great time. Their cabin won the clean award the first day and Aidan swept the entire cabin. We will definitely remember that he has that skill when he comes home. And Noah's team one the spirit award the first day. For some reason, I don't think it's nearly as quiet at camp as it is at home.
But, it's a good reminder that we all need to be quiet sometime. As Psalms says "Be still and know that I am God". It's odd how I can so easily get use to the noise of everyday. Between the hours of 7am and 8pm, it's rarely quiet in the house. Someone is talking, laughing, crying, teasing, whining, singing, etc. I find it easy to either tune in or tune out with the noise. But noise can fill such a void in our life that we block out other things that we need to do. And, you would think that I would appreciate a quiet drive into work, but those that know me, know that the radio is on full blast and I'm probably singing at the top of my lungs on the drive. But, it's good to be still, and it's good to be quiet. So for this week, I'm turning down the radio, turning off the tv, and enjoying the quiet. Because I know it's in the quiet that I can hear God's voice.
We pray you can find some quiet in your life this week to be still.
BTW, Titus was fitted for hearing aids today - he should have them in a few weeks. Just one more step that needs to be done as we prepare for cochlear implants.
Our nephew, Nathan, is at camp as a sponsor with Aidan and Noah. He called yesterday to say everyone was having a great time. Their cabin won the clean award the first day and Aidan swept the entire cabin. We will definitely remember that he has that skill when he comes home. And Noah's team one the spirit award the first day. For some reason, I don't think it's nearly as quiet at camp as it is at home.
But, it's a good reminder that we all need to be quiet sometime. As Psalms says "Be still and know that I am God". It's odd how I can so easily get use to the noise of everyday. Between the hours of 7am and 8pm, it's rarely quiet in the house. Someone is talking, laughing, crying, teasing, whining, singing, etc. I find it easy to either tune in or tune out with the noise. But noise can fill such a void in our life that we block out other things that we need to do. And, you would think that I would appreciate a quiet drive into work, but those that know me, know that the radio is on full blast and I'm probably singing at the top of my lungs on the drive. But, it's good to be still, and it's good to be quiet. So for this week, I'm turning down the radio, turning off the tv, and enjoying the quiet. Because I know it's in the quiet that I can hear God's voice.
We pray you can find some quiet in your life this week to be still.
BTW, Titus was fitted for hearing aids today - he should have them in a few weeks. Just one more step that needs to be done as we prepare for cochlear implants.
Thursday, July 3, 2008
Pulmonologist Visit
Just a quick update about Titus' appointment with the pulmonologist yesterday. Dr. Gelfand was pleased with his progress and has subscribed a different medication for us to try this week to see if it will help his lungs and get him off oxygen. The medicine is also a diuretic, so we are concerned that it will not affect his weight too much - Titus weighed 13lb 9oz yesterday. And, he decreased the number of times per day we can give Xopenex (with the nebulizer) and CPT. We've been doing it 4 times a day, and he suggested we back it down to twice a day. We were thrilled about that since that gives us 1 hour a day back in our schedule and allows us to work on other things with Titus during that time.
And, we found out this morning that we OFFICIALLY APPROVED for Medicaid as of June 4, 2008. Since our insurance only covered a limited amount of therapy and we had already used it up, we've been waiting for approval so we can start therapy again. It also will help with all the treatments and progress toward cochlear implants. We have a fitting for Titus for hearing aids coming up.
Titus had a rough night last night - we think he needed to poo and so he was kicking his feet and arching his back a lot during the night. It was the first night in weeks that his monitors were going off every 15-30 minutes.
We are off to Cedar Creek Lake for the holiday and to celebrate Noah's birthday. He's our firecracker born on the 4th of July. He's turning 10 and could not be more excited!
And, we found out this morning that we OFFICIALLY APPROVED for Medicaid as of June 4, 2008. Since our insurance only covered a limited amount of therapy and we had already used it up, we've been waiting for approval so we can start therapy again. It also will help with all the treatments and progress toward cochlear implants. We have a fitting for Titus for hearing aids coming up.
Titus had a rough night last night - we think he needed to poo and so he was kicking his feet and arching his back a lot during the night. It was the first night in weeks that his monitors were going off every 15-30 minutes.
We are off to Cedar Creek Lake for the holiday and to celebrate Noah's birthday. He's our firecracker born on the 4th of July. He's turning 10 and could not be more excited!
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