Well, I should have learned my lesson by now! It seems as though the trend in our family is to take 3 steps forward and then 2 back! Just when I thought we were on the "other side" of Tanner's complex health needs, I find out that we are still right in the middle of it all!
We had an appointment with the Pulmonologist, and that time she ordered a new chest X-Ray for Tanner. It has been a little over a year since he was really sick with RSV. With that much time, his lungs should have looked nice and clear, but that wasn't the case. He still had some cloudy areas in his lungs, and in the same areas as a year ago. This was a cause for concern, and so he is scheduled to have a CT scan of his lungs to see if he has any signs of chronic lung disease. We were also ordered to participate in another swallow study to see how he was managing his new found swallowing and drinking!!!
Unfortunately, the swallow study still showed that Tanner was aspirating thin liquids. For those of you that haven't been to, or heard of a swallow study, they are actually really interesting! They have Tanner sit in a chair in front of the X-Ray machine, and as he drinks you can see exactly where the liquids are going on the X-Ray screen. Pretty fascinating! When he aspirates, it means that he is getting a small amount of the liquid that he is drinking in his lungs. When this happens with a "normal" person, we call it going down the wrong tube and we react with a cough. Tanner, however doesn't do any coughing, so you have no way of knowing that he is aspirating unless you are watching him through the X-Ray machine. This is scary because it can cause pneumonia, and other respiratory complications.
So, for now we still have to thicken Tanner's liquids with a clear and tasteless gel called, Simply Thick, and he is restricted to drinking only 1 ounce, 3 times a day for continued practice. So my high hopes of getting rid of the feeding tube by the end of the summer was squashed in one appointment. It was very hard information to hear. It feels very conflicting to see what looks like a healthy little boy, thriving and making so much progress developmentally being held back from doing these new skills. So, the feeding tube moves to Arizona with us!!! I am still thankful that God has provided for our son and continues to watch over him, and I pray that I still see the progress continue, despite this set back.
His CT scan will give us some more information and show if he has any signs of Chronic Lung Disease. I am praying like crazy that they don't find any evidence of CLD. If they do, then we will move forward with having another surgery to perform a lung biopsy. We are back playing the waiting game....which is the hardest part of this journey. Your mind tends to wander to places that you don't really care for when you are waiting for answers. Please join me in prayer, asking that God would touch Tanner's lungs so that they are perfectly healthy on the day of the scan.
In other news, our home is in utter chaos!!! I have made and unmade boxes sitting everywhere with NO motivation to pack, other than the fact that we are boarding a plan THREE weeks from today to Arizona!!! We also have a sick cat that most likely has Feline Leukemia and we are trying to decide if putting him down is the best option. We are enjoying our last play dates with friends, bible studies, moms groups, and time with our family before we leave. Never a dull moment here in the Raper home!!!
I will post the results of Tanner's CT scan when we get the news!!
Then choose this day whom you will serve....As for me and my house, we will serve the Lord Joshua 24:15
Monday, April 30, 2012
Friday, April 6, 2012
Tanner!
Wednesday was a long day of therapy and several appointments at Children's. It is funny to think back to some of the times when we were at Children's for days on end, waiting for the doctor to finally come around and tell us that it was our turn to go home......now when I walk through the doors of Children's I can't help think about how much I will miss going there and seeing the faces of the people that have been there for my son since he was 2 days old. They have become a community for us, and they are all incredible and have served and blessed my family in more ways than taking care of Tanner! They have cried with me, laughed with me, and rocked my baby when I couldn't be there. They have seen me two days post birth, crying, emotional, and so unsure of the future. Now when I walk in, I am confident in knowing that God does have a plan for Tanner, and all of the people that we have come in contact with through the doors of Seattle Children's are part of that plan.
So, Wednesday was the last visit with his Neuro-Developmental specialist. The last time we saw her was a little over 7 months ago. 7 months ago was when I first heard about the possibility of genetic testing. The words came out of her mouth and a weight was put on my shoulders. Suddenly her voice sounded like the teacher on the Charlie Brown cartoons. I didn't hear anything except for genetic testing, genetic disorders and diseases. At that point I didn't know a lot about genetics, except for the fact that it is lifelong and irreversible. I was shaken to my core. Feeling like God was seriously overestimating what I was capable of handling. Needless, to say the visit was not one of my favorite ones that we had, had! I was told that Tanner was behind in gross/fine motor skills, as well as cognitive skills. He was unable to sit up, bear weight on his legs, pick up small objects, and the list went on. I think the word that came to my mind was defeated. I felt defeated as a mother, like I hadn't done my job, and I failed my son. I didn't take the right vitamins when I was pregnant, eat the right foods, had one too many sodas. The list of possibilities of how this was my fault was never ending.
Fast forward to Wednesday, April 4th.....We have completed the genetic testing, know the results, have come to term with the diagnosis, and we are back for a follow up visit with Miss Beth, the Neuro-Developmental specialist! The news, Tanner has made significant progress and is only behind in his gross motor skills! He has caught up to his peers in his fine motor and cognitive skills! The feeling of the two appointments were like night and day, we had come full circle! I realized that I have walked through the fire, faithful in knowing that God is good and has a plan for my son and for my family, and we are walking on the other side stronger because of it. By no means is our journey over, unfortunately with a genetic deletion you never fully know what the future holds, But for now we rejoice that he is making progress! We were not surprised that he still needs work to develop his gross motor skills, he still isn't walking, but we know that it will come just like the other skills have.
As I was driving home I was thinking to myself, "would I change this journey?" I can honestly say, No. If I had a "perfectly healthy" child, I would not have become a part of the amazing family that is Seattle Children's. I feel honored to have been a part of such a wonderful organization. I served on a parental advisory board, and it was incredible to share feedback and become more involved in a community that holds a special place in not only my heart but many others as well.
Yes, I have to admit I will miss watching the fisheys and the crabs in all the tanks around the hospital! I will miss going up to the cafeteria and getting grilled cheese and apple juice with Whitney! And most of all I will miss all the doctors and nurses that have touched our lives and held our hands through 3 surgeries, 45 overnight stays, and countless clinic visits! I will even miss seeing Hector once a month for Tanner's blood draws (although I don't think Tanner will miss this!!)
I have prayed for Tanner every day since before he was born, and God is answering prayer and showing us every day though Tanner's smile that HE is faithful and HE will do it!!!
So, Wednesday was the last visit with his Neuro-Developmental specialist. The last time we saw her was a little over 7 months ago. 7 months ago was when I first heard about the possibility of genetic testing. The words came out of her mouth and a weight was put on my shoulders. Suddenly her voice sounded like the teacher on the Charlie Brown cartoons. I didn't hear anything except for genetic testing, genetic disorders and diseases. At that point I didn't know a lot about genetics, except for the fact that it is lifelong and irreversible. I was shaken to my core. Feeling like God was seriously overestimating what I was capable of handling. Needless, to say the visit was not one of my favorite ones that we had, had! I was told that Tanner was behind in gross/fine motor skills, as well as cognitive skills. He was unable to sit up, bear weight on his legs, pick up small objects, and the list went on. I think the word that came to my mind was defeated. I felt defeated as a mother, like I hadn't done my job, and I failed my son. I didn't take the right vitamins when I was pregnant, eat the right foods, had one too many sodas. The list of possibilities of how this was my fault was never ending.
Fast forward to Wednesday, April 4th.....We have completed the genetic testing, know the results, have come to term with the diagnosis, and we are back for a follow up visit with Miss Beth, the Neuro-Developmental specialist! The news, Tanner has made significant progress and is only behind in his gross motor skills! He has caught up to his peers in his fine motor and cognitive skills! The feeling of the two appointments were like night and day, we had come full circle! I realized that I have walked through the fire, faithful in knowing that God is good and has a plan for my son and for my family, and we are walking on the other side stronger because of it. By no means is our journey over, unfortunately with a genetic deletion you never fully know what the future holds, But for now we rejoice that he is making progress! We were not surprised that he still needs work to develop his gross motor skills, he still isn't walking, but we know that it will come just like the other skills have.
As I was driving home I was thinking to myself, "would I change this journey?" I can honestly say, No. If I had a "perfectly healthy" child, I would not have become a part of the amazing family that is Seattle Children's. I feel honored to have been a part of such a wonderful organization. I served on a parental advisory board, and it was incredible to share feedback and become more involved in a community that holds a special place in not only my heart but many others as well.
Yes, I have to admit I will miss watching the fisheys and the crabs in all the tanks around the hospital! I will miss going up to the cafeteria and getting grilled cheese and apple juice with Whitney! And most of all I will miss all the doctors and nurses that have touched our lives and held our hands through 3 surgeries, 45 overnight stays, and countless clinic visits! I will even miss seeing Hector once a month for Tanner's blood draws (although I don't think Tanner will miss this!!)
I have prayed for Tanner every day since before he was born, and God is answering prayer and showing us every day though Tanner's smile that HE is faithful and HE will do it!!!
Tuesday, April 3, 2012
The Beginning
Well, I decided to start a blog. Since we are moving to Arizona in May, I thought it would be nice to have a place to post pictures and update our family and friends about what is going on in the Raper family!
Life these days has been pretty chaotic! Devin accepted a diving job in Louisiana, which means that we are living apart. He is sharing a small house in Morgan City, LA with some co-workers, and the kids and I have decided to stay here in Kirkland until our lease is up in May. After our lease is expired, we will move to Scottsdale, AZ to be closer to my family. It was a very hard decision to come to, but we decided as a family that it would be the best situation for me and the kids. It has been a rollercoaster of emotions. Moving to Arizona means leaving behind friends, family, and a church that we both love. However, on the flip side, moving also means that we gain my family, SUN, and hopefully new friendships!
All of the sudden I feel like I have to pack in all the "Washington" activities before we leave! So I have scheduled a trip to the Tulip Festival, the Puyallup Spring Fair, and I think a ferry ride with the kids is in order!!! I have to keep reminding myself that we will be back to visit! Devin's family still lives in this area, and so we will be back frequently for visits, but it still seems like I need to have my fill of Washington before I leave!!! I have purchased myself and the kids each a Husky sweatshirt, a Seattle Children's Hospital Blanket, and I know there will be more Seattle souvenirs to come!!!
Life for me mainly consists of taking care of the kids. I am REALLY missing my partner, and I know the kids are missing their Dad. Thank God for Skype! It has been great to connect with Devin face to face, and give the kids a chance to see their dad and have a conversation with him.
I will do my best to keep this blog updated with all the happenings of the family! The next few weeks are going to be busy with packing, paperwork, doctors appointments, and figuring out all the details of the move! I do know one thing for sure, we are leaving to AZ on May 21st! Our one way tickets were purchased, and ready or not thats when we board the plane!
Love to all our family and friends!
Lee (and the other 3!)
Life these days has been pretty chaotic! Devin accepted a diving job in Louisiana, which means that we are living apart. He is sharing a small house in Morgan City, LA with some co-workers, and the kids and I have decided to stay here in Kirkland until our lease is up in May. After our lease is expired, we will move to Scottsdale, AZ to be closer to my family. It was a very hard decision to come to, but we decided as a family that it would be the best situation for me and the kids. It has been a rollercoaster of emotions. Moving to Arizona means leaving behind friends, family, and a church that we both love. However, on the flip side, moving also means that we gain my family, SUN, and hopefully new friendships!
All of the sudden I feel like I have to pack in all the "Washington" activities before we leave! So I have scheduled a trip to the Tulip Festival, the Puyallup Spring Fair, and I think a ferry ride with the kids is in order!!! I have to keep reminding myself that we will be back to visit! Devin's family still lives in this area, and so we will be back frequently for visits, but it still seems like I need to have my fill of Washington before I leave!!! I have purchased myself and the kids each a Husky sweatshirt, a Seattle Children's Hospital Blanket, and I know there will be more Seattle souvenirs to come!!!
Life for me mainly consists of taking care of the kids. I am REALLY missing my partner, and I know the kids are missing their Dad. Thank God for Skype! It has been great to connect with Devin face to face, and give the kids a chance to see their dad and have a conversation with him.
I will do my best to keep this blog updated with all the happenings of the family! The next few weeks are going to be busy with packing, paperwork, doctors appointments, and figuring out all the details of the move! I do know one thing for sure, we are leaving to AZ on May 21st! Our one way tickets were purchased, and ready or not thats when we board the plane!
Love to all our family and friends!
Lee (and the other 3!)
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