Friday, February 19, 2010
Comments
We have now adjust our blog to be able to receive comments. Something along the way changed this and we never noticed. Now it's fixed and we look forward to hearing from you if you would like to comment.
Thursday, February 18, 2010
What's your frame look like?
Throughout this journey we would like to keep you all updated and share how we are seeing God work in and through Micah and our family. If these were the only thing we shared it could look like things are progressing along fine and dandy. It's really all in how we frame it to you to be quite honest. I would like to be especially real and let you in on how we are framing it to ourselves and coping per se.
Today, Wednesday, has actually been quite intense and stressful and very horrible at times. To sum up our day he has had 3 different nasogastric tubes placed through his nose and into his stomach, he slept 1-1/2 hours of a 12 hour period and has had an intense and painful bout of reflux. Then throw in all the emotions, doctors, nurses, equipment, scheduling and sleep deprivation and you have a cocktail that can produce grumbling, complaining and sarcasm that is fierce.
Once again, to be completely honest I have typed several snappy smart sarcastic comments into my status on facebook only to delete them. Before I decide to share them I take a deep breath, pray and make a choice to honestly answer a question.
How am I going to frame this?
It's always easy to see the irritating and the difficult. These aspects of our situation are real and not easy. They are also not to be stuffed, however they are also not to be dwelled upon. If I continue to rehash the negative I'm going to be hospitalized for my own reflux coming back. Now, will we be perfect at this, absolutely not but we will do our best.
So what's my frame look like?
I'm working to frame our situation in a positive light as much as possible. When I want to slip into a slump of depressing and sarcastic comments and thoughts I am working to start reviewing the good. Framing the situation in the positive. What do we have to be thankful for?
To list a few, I am thankful for:
-My skills as a Behavior Analyst that help me observe Micah and see the patterns of what he's going through.
-Having reflux myself as an adult so I have first hand knowledge of what he is going through.
-Being familiar with the IV and feeding pumps due to what we experienced with Home Health Care for my mom just a couple months ago. (Bummer for my mom but she is now doing pretty good.)
I could go on for awhile and I will at a later date. Now it's super late and I need to sleep.
One more honest reality is that in a perfect world I would have a few scriptures to back this all up to be encouraging to us all.....ya, today I could barely go to the bathroom let alone focus on finding encouraging verses. We are in survival mode. I'm actually typing this to stay awake while a pump is finishing feeding Micah. So if you come across a good verse feel free to pass it on to us.
Now off to sleep til the blood draw person arrives at 4am or so.
Good Morning!
Today, Wednesday, has actually been quite intense and stressful and very horrible at times. To sum up our day he has had 3 different nasogastric tubes placed through his nose and into his stomach, he slept 1-1/2 hours of a 12 hour period and has had an intense and painful bout of reflux. Then throw in all the emotions, doctors, nurses, equipment, scheduling and sleep deprivation and you have a cocktail that can produce grumbling, complaining and sarcasm that is fierce.
Once again, to be completely honest I have typed several snappy smart sarcastic comments into my status on facebook only to delete them. Before I decide to share them I take a deep breath, pray and make a choice to honestly answer a question.
How am I going to frame this?
It's always easy to see the irritating and the difficult. These aspects of our situation are real and not easy. They are also not to be stuffed, however they are also not to be dwelled upon. If I continue to rehash the negative I'm going to be hospitalized for my own reflux coming back. Now, will we be perfect at this, absolutely not but we will do our best.
So what's my frame look like?
I'm working to frame our situation in a positive light as much as possible. When I want to slip into a slump of depressing and sarcastic comments and thoughts I am working to start reviewing the good. Framing the situation in the positive. What do we have to be thankful for?
To list a few, I am thankful for:
-My skills as a Behavior Analyst that help me observe Micah and see the patterns of what he's going through.
-Having reflux myself as an adult so I have first hand knowledge of what he is going through.
-Being familiar with the IV and feeding pumps due to what we experienced with Home Health Care for my mom just a couple months ago. (Bummer for my mom but she is now doing pretty good.)
I could go on for awhile and I will at a later date. Now it's super late and I need to sleep.
One more honest reality is that in a perfect world I would have a few scriptures to back this all up to be encouraging to us all.....ya, today I could barely go to the bathroom let alone focus on finding encouraging verses. We are in survival mode. I'm actually typing this to stay awake while a pump is finishing feeding Micah. So if you come across a good verse feel free to pass it on to us.
Now off to sleep til the blood draw person arrives at 4am or so.
Good Morning!
Wednesday, February 17, 2010
Bring it on!
Tuesday was a full day of everyone doing their exams and assessments to decide where to begin. Here's a rundown of the basics.
Micah was seen by:
The Occupational Therapist-twice
The Nutritionist
The Neurologist
The Gastro Intestinal Dr.
The Hospitalist-Dr. overseeing all his care while here
The Blood draw guy
and three visitors
All of these specialists made their initial recommendations and we are now waiting on an MRI to proceed. The MRI is complicated to schedule because the ENT needs to do an in depth scope of his esophagus to fully clear him for an MRI. This way they only have to put him under once. Hopefully this will work out this way.
Later in the evening they installed a feeding tube through his nose. This will be used to supplement what he takes by mouth. He then slept through the night and so did Randy.
Today, Wednesday, we are working out all the kinks in the feeding tube process. As he was being put back in bed the tube caught in the side of the bed and pulled out. No one was happy about this. They then put another one back in. When we went to feed him it took a VERY long time. They have now decided to put in a larger tube. This will be good for feeding but hard on Micah emotionally (and us too).
Pray for the MRI to get scheduled, the feeding to go smooth and the evening to be a peaceful one.
Micah was seen by:
The Occupational Therapist-twice
The Nutritionist
The Neurologist
The Gastro Intestinal Dr.
The Hospitalist-Dr. overseeing all his care while here
The Blood draw guy
and three visitors
All of these specialists made their initial recommendations and we are now waiting on an MRI to proceed. The MRI is complicated to schedule because the ENT needs to do an in depth scope of his esophagus to fully clear him for an MRI. This way they only have to put him under once. Hopefully this will work out this way.
Later in the evening they installed a feeding tube through his nose. This will be used to supplement what he takes by mouth. He then slept through the night and so did Randy.
Today, Wednesday, we are working out all the kinks in the feeding tube process. As he was being put back in bed the tube caught in the side of the bed and pulled out. No one was happy about this. They then put another one back in. When we went to feed him it took a VERY long time. They have now decided to put in a larger tube. This will be good for feeding but hard on Micah emotionally (and us too).
Pray for the MRI to get scheduled, the feeding to go smooth and the evening to be a peaceful one.
Tuesday, February 16, 2010
Our first day of staycation
Monday morning we were up early, showered, dressed, car packed and waiting for the call from our doctor by 8am. We were ready to get this show on the road and get him the help he needs. Before we knew it 9am was here and we were now anxiously waiting the call. The girls had a play date so we dropped them off with the cell phone near by. At 9:30 we got a call...as we listened we were a bit discouraged. We were on a waiting list to be admitted, so much for an Urgent Admit for urgent issues. So we were now waiting for another call to go to the hospital. We regrouped and tried to not do anything that required a commitment in hopes that call would come soon. We went through our day trying to just get things done...dishes, laundry, picking up, resting and a fair amount of Wii time with the girls. Every time the phone rang the girls would ask if that was "the call".
By late afternoon, we were antsy. Due to RSV season the hospital is booked and there was a chance that we would have to wait til Tuesday. With dinner time approaching, Micah napping and a call pending it was time to fire up the oven and break out the frozen food for the dinner we had not planned to have at home. As frustrated as we were this was one of the best dinners our girls had eaten in a very long time. Our girls eat they just truly don't like the same food. They actually like opposite foods which can make it difficult to prepare a dinner. All this to say I was happy that everyone enjoyed a good dinner. Just as we were finishing up dinner and discussing the list of things we needed to do since we were still home, Randy was planning to go to work if we were still home on Tuesday morning.
We all went into high gear. The girls gathered their things, we gathered the last of ours and off we went! We dropped the girls off at the grandparents on the way and headed straight to the hospital.
We were admitted pretty quickly and taken to our room. We have a conveniently located room on a corner next to the nurses station. Our room also has a little extra space due to an equipment room that is attached. Once we were settled they came and did all the basics. The residents came in and collected all their information. Then the IV guys came and took him to the treatment room for his IV placement. Micah does not like to be held down for anything whether it is head measuring, temp taking or IV placement. He was MAD! The procedure went well and his left arm is now taken over by IV stuff. He's learning to adjust. He then fell asleep and we settled in as well. Our night was awesome! He slept from 11ish to 8ish this morning, which means we did as well. Woo Hoo!
We are now waiting as all the many tests, procedures, therapists and doctors are lined up. Micah is sleeping and we are trying to enjoy or forced staycation.
More will come later.
By late afternoon, we were antsy. Due to RSV season the hospital is booked and there was a chance that we would have to wait til Tuesday. With dinner time approaching, Micah napping and a call pending it was time to fire up the oven and break out the frozen food for the dinner we had not planned to have at home. As frustrated as we were this was one of the best dinners our girls had eaten in a very long time. Our girls eat they just truly don't like the same food. They actually like opposite foods which can make it difficult to prepare a dinner. All this to say I was happy that everyone enjoyed a good dinner. Just as we were finishing up dinner and discussing the list of things we needed to do since we were still home, Randy was planning to go to work if we were still home on Tuesday morning.
The phone rang....
It was THE CALL!
We all went into high gear. The girls gathered their things, we gathered the last of ours and off we went! We dropped the girls off at the grandparents on the way and headed straight to the hospital.
We were admitted pretty quickly and taken to our room. We have a conveniently located room on a corner next to the nurses station. Our room also has a little extra space due to an equipment room that is attached. Once we were settled they came and did all the basics. The residents came in and collected all their information. Then the IV guys came and took him to the treatment room for his IV placement. Micah does not like to be held down for anything whether it is head measuring, temp taking or IV placement. He was MAD! The procedure went well and his left arm is now taken over by IV stuff. He's learning to adjust. He then fell asleep and we settled in as well. Our night was awesome! He slept from 11ish to 8ish this morning, which means we did as well. Woo Hoo!
We are now waiting as all the many tests, procedures, therapists and doctors are lined up. Micah is sleeping and we are trying to enjoy or forced staycation.
More will come later.
Sunday, February 14, 2010
For this child I have prayed
We have been quite busy in the last few weeks. Our little guy is such a blessing. He has managed to have everyone he comes in contact with wrapped around his little finger. His strongest qualities are in his social skills. Once he starts talking to you your heart will be won over as well. The combination of his cute tiny voice, baby belly laughs, BIG chocolate brown eyes, charming smiles and curly hair beginning to grow bring us such joy! We are so blessed.
When we began pursuing Micah we had been at a point where we had a heart for adoption and were waiting on God to show us which way to go. We had no idea what direction we may be going in. Our biggest concern was that whatever it was we would be obedient and not take a step without God's leading. We learned of Micah and began to pray for him to find his forever family to realized 7 weeks later that we were that family. Along the way we learned that Micah was going to have some special needs. The most pronounced issues was cerebral palsy along with some brain issues. God was working loud and clear in our adoption process and confirming every step of the way that we were meant to be his forever family. Our lives were never going to be the same. Our lives were going to be blessed more than we could imagine by this little boy. Once we got home and managed to flip our days and nights back around we began the appointments. We needed to get Micah checked out head to toe and figure out how to help him the best. In the last 30 days we have taken Micah to 14 doctors appointments. These many appointments have multiplied into many more referrals. With each appointment we have learned a little more, one more piece to the puzzle. Micah has been a trouper through it all. The most difficult for him has been the eye doctors. From these appointments we learned that Micah does not have cancer in his eyes! Thank the Lord! We were told this at the first appointment. What we did learn is that he is legally blind but not necessarily permanently blind. There is no guarantee if he will develop more sight but there is a chance. Waiting and development is what will tell...months and years. While we are waiting we know he does see shadows and some light. He loves to be talked to and will often times smile or talk to others as well.
We are blogging so our readers can see how God is going to work in and through Micah. We hope and pray that you will join us in praying for him and are blessed along the way as we have been.
Over the last week we have seen a decline in his eating and his weight. Micah does not have any room to lose any amount of weight. This lead to a couple more appointments and several conversations with the doctors. What has now been decided is that Monday morning Micah will be admitted to Valley Children's Hospital. He is going to undergo a massive amount of testing by doctors from almost every department in the hospital. He will also probably have surgery where a couple of different things will be done. We do not know exactly how long we will be there but close to a week is probably accurate. During this time your prayers are coveted. We have never had a child in the hospital before. This is new territory for us. Our biggest request is that the doctors will have wisdom to clearly see all that is going on in Micah's little body. The next request would be for our family to be strengthened through this process. We clearly see that this is absolutely necessary and essential to his development. This process is still going to be difficult to see him have to go through it all. We are not looking forward to seeing him hooked up to all the hospital gear. At this point we are weary and ready for more progress.
We invite you to join us along our journey of seeing God's hand. For Micah to be at this point already is a miracle in itself. We are excited to see the plans God has for him and blessed to be on this ride as well. We want you to be able to say,
When we began pursuing Micah we had been at a point where we had a heart for adoption and were waiting on God to show us which way to go. We had no idea what direction we may be going in. Our biggest concern was that whatever it was we would be obedient and not take a step without God's leading. We learned of Micah and began to pray for him to find his forever family to realized 7 weeks later that we were that family. Along the way we learned that Micah was going to have some special needs. The most pronounced issues was cerebral palsy along with some brain issues. God was working loud and clear in our adoption process and confirming every step of the way that we were meant to be his forever family. Our lives were never going to be the same. Our lives were going to be blessed more than we could imagine by this little boy. Once we got home and managed to flip our days and nights back around we began the appointments. We needed to get Micah checked out head to toe and figure out how to help him the best. In the last 30 days we have taken Micah to 14 doctors appointments. These many appointments have multiplied into many more referrals. With each appointment we have learned a little more, one more piece to the puzzle. Micah has been a trouper through it all. The most difficult for him has been the eye doctors. From these appointments we learned that Micah does not have cancer in his eyes! Thank the Lord! We were told this at the first appointment. What we did learn is that he is legally blind but not necessarily permanently blind. There is no guarantee if he will develop more sight but there is a chance. Waiting and development is what will tell...months and years. While we are waiting we know he does see shadows and some light. He loves to be talked to and will often times smile or talk to others as well.
We are blogging so our readers can see how God is going to work in and through Micah. We hope and pray that you will join us in praying for him and are blessed along the way as we have been.
For this child I have prayed.
I Samuel 1:27
Over the last week we have seen a decline in his eating and his weight. Micah does not have any room to lose any amount of weight. This lead to a couple more appointments and several conversations with the doctors. What has now been decided is that Monday morning Micah will be admitted to Valley Children's Hospital. He is going to undergo a massive amount of testing by doctors from almost every department in the hospital. He will also probably have surgery where a couple of different things will be done. We do not know exactly how long we will be there but close to a week is probably accurate. During this time your prayers are coveted. We have never had a child in the hospital before. This is new territory for us. Our biggest request is that the doctors will have wisdom to clearly see all that is going on in Micah's little body. The next request would be for our family to be strengthened through this process. We clearly see that this is absolutely necessary and essential to his development. This process is still going to be difficult to see him have to go through it all. We are not looking forward to seeing him hooked up to all the hospital gear. At this point we are weary and ready for more progress.
We invite you to join us along our journey of seeing God's hand. For Micah to be at this point already is a miracle in itself. We are excited to see the plans God has for him and blessed to be on this ride as well. We want you to be able to say,
"For this child I have prayed!"
Please join us!
Thursday, January 28, 2010
What's keeping us busy
What a week we have had! We have been visiting a variety of doctors to get Micah all checked out and to begin working through some of his health concerns. The concerns are that he is a preemie who had no medical care and also that he has been diagnosed with cerebral palsy. He also has a constant rattle sound he makes and we need to know what that is.
What we've learned most recently is:
-His chest X-ray came back clear which is good
-His swallow study went well, meaning he can swallow and there is no obvious problem with food going the wrong way, also good news
-He also had a visit to the eye doctor. This appointment has lead us on to another referral to a specialist to check some things out.
-The most productive appointment was the physical therapist. She checked him out and tested his abilities. We left with a long list of stretches, some tubigrip and more referrals. Next time you see him he may be sporting his Tubigrip, which looks like a combination of cotton tights and leg warmers. He wears these during the day on his legs and arms. This helps his brain know where his arms and legs are. So far he has done very well with them on. He is moving more and stretching out his arms and legs more as well. He is quite tickled with his new movements.
Next week we will be visiting an ENT to address the rattle sound he makes. We will also be hearing about several other referrals and appointments. Your prayers are appreciated as we work to address Micah's needs.
A month ago today...
We met Micah for the first time. It's hard to believe all that has happened in the last month. We are still wrapping our brains around how completely different our lives are from just one month ago. We have settled into the slow pace of life with a baby. Micah is doing pretty well.
He has relaxed and mellowed a lot in the last month. We have done the same. This new season of life has been enjoyable, exhausting, and consuming.
We are blessed beyond belief and honored to be Micah's forever family.
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