Friday, August 22, 2008

Hearing Aids

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.

Monday, August 18, 2008

9 Months Old

Titus turned 9 months old last week. He weighed in at 14lbs and 1 oz at his 9 month check-up and he is doing incredibly well. He's been off oxygen during the day for a month. At night, his oxygen sats tend to sink after he goes into a deep sleep, so we keep him on oxygen as a precaution. Titus did have a sleep test this past week to see if there might be any underlying reason why this was happening, but as you might expect, he did wonderfully all night without oxygen for the test. We have not received the final results from the doctor though, so we will wait and see if they detected anything.

Now that we have Medicaid coverage, we have started back to therapy 4 times a week. Therapy wears him out (it's a 30 minute session), but he is a such a trooper. He is showing improvement and strength which is so encouraging. Developmentally, Titus is around 3 months; Socially, he's at a 5 months stage. Considering all of his needs and the fact he spent close to 3 1/2 months in the hospital after birth, we feel this is great. We can see the improvements and he is gaining in head control, arm strength, and showing that he is using his stomach muscles when he grasps his feet. We are also working strengthening his arm muscles. He's starting to push and pull with them his arms.

We have also received our Medically Dependent Children's Program approval which provides for nursing care throughout the week. We will have a nurse come 2 nights a week to stay with Titus through the night which allows for us to get a solid, uninterrupted night's sleep. Last Wednesday night was our first night with the night nurse. Her name is Clarice and she is from Cameroon and it looks like she and Titus have hit it off. She said Titus woke around 1am and started playing in his crib, so she picked up him and held him the rest of the night. I think he may get a little spoiled here. Becky is still working on our schedule for daytime nurse aid visits (of which we can have up to 30 hours during the week). This will be very helpful once home-school starts up full-time.

There are times the last 9 months seem to be a blur. Someone told us early on that the first year with a special needs child is the hardest. And, I can see how that can be as you adjust to all the changes. It truly changes so many areas of your life: your hopes and dreams, your vacation plans, your free time, your financial plans (I am now having to plan for Titus retirement along with my own). There are still moments of grief that sneak up on us and can be overwhelming. When I see most 9 months old can do and what Titus can't do, there are times I'm discouraged. But, I have had to learn that "all things work together for good" and to "choose you this day who you will serve". I can choose to succumb to the grief or I can choose to submit to God's plan - even when I don't fully understand. But any moment of grief we have melts away when Titus is in our arms. His smile when we rub noses thrills my soul. The way he snuggles in after he has been fed shows me his trust and contentment in his father. His laugh when his brothers play with him is the sweetest sound.

Please pray for these things over the next few weeks.
  • Our appointment with the pulmonologist as a follow-up to the sleep study.
  • Titus breathing at night will grow stronger.
  • Hearing aids and hearing aid therapy will start soon as we prepare for cochlear implants.
  • Our vacation over Labor Day to Family Camp. As a family, going to family camp is one of the highlights of our year. But, it's a long drive to Indianna and back, and the the time in the car, change in schedule, differents senses/smells for Titus, etc - are all overwhelming for him. Pray for his comfort and health on the trip.
  • Titus appointment in September with the glaucoma specialist. When we return from Family Camp, Titus has a follow-up appointment in Houston. 3 months ago, his levels were in the normal range. We pray they still are and no additional surgery will be necessary.

Monday, August 11, 2008

Sleep Test

Titus is going in for a sleep test tonight. He's been off oxygen for a month now and during the day does great. But at nighttime, after he's been asleep for about an hour, his oxygen saturations level sink and we have been putting him on oxygen to get him back up. Generally during the night, he starts playing with his oxygen tube/canula and takes it back out - some nights he's fine, but other nights, his SATS go up and down. So, they are doing a sleep test to see if they can pinpoint the reasons why. Becky will be staying with him all night. Your prayers are appreciated.

Thursday, August 7, 2008

Innocence or Trouble?

Tucker and Cade are just full of innocence. And then there are days that they are just filled with mischief. Just look at these pictures. Can you tell what type of day they are having?

Titus Update: MDCP

Over the last few months, we have been working on getting Titus approved for MDCP: Medically Dependent Children's Program. This is a state of Texas run program that will provide us a budget of dollars to be spent on nursing care, therapy, etc. It also approves Titus for Medicaid. We received the Medicaid approval several months ago, and have been going through the paperwork to finish the process. Our paperwork was completed several weeks back, but for Titus to be put at the top of the list for approval, he had to spend a day at a state-approved nursing home.

Yesterday, Becky and a friend, Marti, drove Titus to Gainesville, Tx (an hour north of here) to check in prior to 5pm and then drove back late last night.

As Becky stated honestly, this wasn't the happiest place to be. For many of the elderly that lived there, this is simply their last stop on this earth. The strong medicinal/antiseptic smell permeated the air, many were sitting listless in the lobby, but they loved seeing a baby in their midst.

After they checked in, Marti ran back out to the car to retrieve some of their stuff and she over heard this conversation on the front porch. As she described it, two elderly women were out on the porch. One looked at the other and stated "Hurry, come out here - look at this beautiful day." And the other replied "Yes, how beautiful - This is the day the Lord has made, let us rejoice and be glad".

What a reminder that no matter what state or place we are in, we should rejoice and be glad.

Now that Titus has Medicaid, he is able to return to therapy - which will eventually be 4 days a week. He has made great progress. Developmentally, he's at a 3 month stage; Socially, he's at a 5 month stage. He's improving his control on holding his head up and we are working on him rolling over. He has found his toes and will lift those up and grab his toes and play with them. As I've stated before, he is still the happiest, most content baby you have ever been around.

Thanks for all the prayers - and please continue to pray for his development and therapy.

Monday, August 4, 2008

Iron Sharpens Iron

As mentioned last week, we had 3 extra kids stay with us for the week. What an incredible time we had last week with 8 kids in the house. Now, I know what most of you are thinking - "you guys are CRAZY!" But, can I tell you how calm and peaceful a household can be when you have 8 well-trained kids. Conflicts were minimal, fun was had, lots of laughter was shared. It was like eating with the Waltons every night for dinner (and you can't imagine how quickly the kitchen was cleaned up after.) Now, I'm still finding Nerf darts all over the house from the incredible Nerf Gun War. We'll eventually get them off of all the high window ledges.

The kids wrapped up their music camp with their program on Friday night and then an encore performance on Sunday morning for children's church. They were awesome.

Becky is so ready to have a 14 year old girl after having Ashley last week. I did have to correct her and say "not just any 14 yr old girl, but one who has been raised with Biblical principles like Ashley".

So, Ashley, if your reading this and ever want to run away from home, you have a home with us. And, please bring Morgan and Leighton too.

Mike and Jodi K, the incredible parents of Ashley, Morgan, and Leighton came for the weekend with their other 2 kids - which just added to the fun. I think the 4 of us talked non-stop (which isn't really hard for Mike and Becky - but I do think Jodi and I will say our mouths might be tired from the talking).

As usual, Mike and Jodi encouraged us on our parenting. They are truly an "iron sharpens iron" couple in our lives and helped us see areas we need to work on.

And as usual, one of them makes a comment that just stops me in my tracks and makes me think. As we were talking late one night, Jodi stated "God can never take you farther than the last place you told him no."

I reflect back on my life and realize I have told God "NO" a lot. No - I can't do that; No - I can't forgive that person; No - I won't talk to that person; No - I won't confess that sin; No - I don't want what YOU have provided.

And then I look at the life of Jonah and realize I'm such a Jonah at times - running away, hiding, and believing I can escape God's plan. I still have to learn that God wants my obedience, not my defiance; God wants my submission, not my selfishness; God wants the best for me, not what I want for me; God wants my YES, not my NO.

Can you imagine how you could turn the world upside down if you just stopped saying NO? Can you imagine where God could take you if we said YES?


Yes, Lord . . . Yes!