eyes, eating, and a sunny day
Mar 30, 2007 4:04 AM
Hello again,
It has been quite a while since I posted last. So much has happened. We did move and it is such a releif to not worry about mold hurting the kid's lungs. We love our new house and we have wonderful neighbors all around.
We have taken Joshua to see his eye doctor and she dilated his eyes to see if his prescription needed to be adjusted. Well, she was surprised. This is the second year in a row that his eyes have actually improved. I don't know how many of you know about ROP, but improvement really isn't supposed to happen. Usually the eyes are supposed to get worse. Joshua's doctor can't believe that his eyes are as good as they are for how severe the ROP was. He still has a high prescription and can't see as well as most even with the glasses on, but the fact that he can see and is improving is a miracle!
We took Joshua and Hannah to their lung doctor recently too. they upped a few medications and lowered a few.
We also took Josh to the feeding clinic. We found out a lot of things. The evaluation was long and involved four different people. After it was over and they talked with us, they told us that they have never seen a child having such a difficult time eating and trying so hard! I couldn't believe it. These are specialist that work with many out of town families such as ourselves. Out of all those kids Joshua has the most difficulty?! I felt really bad like I did something wrong.
We actually had done almost everything they suggested, but we are making some changes. I just thought these eating problems were a way of life.
Every system is involved with Joshua's eating issues. We had to go go buy special chairs and a table, get special straws, feed every 2 1/2 hours but only allow 30 minutes for each meal(that is more feedings that I gave to my full term newborns!). A major issue is the processing. I need to become a different kind of cook. Every meal we need to offer one easy to eat, flavorful, full of calorie dish first. After he eats that then we offer more things one at time until at the end of the mean we give him something like an apple slice to practice chewing, but doesn't need to give him any calories. We also need to offer his high calorie drink. If I make any meat it needs to be the consistency of already chewed meat, so it falls apart in his mouth. I need to add more gravies and sauces to add calories. I am a no dressing,no sour cream, no mayo type of person...this is so foreign to me!! My husband can't eat like that or he will gain too much weight and too fast. The other kids are skinny enough that eating like Joshua does isn't a problem. It would be really easy to just go buy all the processed meats and foods because they are easier to chew, but I don't want to clog up his veins with cholesterol since we have a family history of diabetes (three of my grandparents, my husband's dad and grandmother.) If I sound overwhelmed it is because I AM!
The speach therapist who evaluated him told us that with the way his mouth and tongue are shaped and working(toungue movement issues) that is is amazing he can talk so well. She said that he should only be able to say his vowels and a few baby constenenst(M, B). He is truly a miracle.
My grandmother had a stroke and a heart attack a few days before we moved. It has been very hard on my family(extended). She just had eye surgery yesterday. She can't walk yet, but can talk and just got home. She is on a strict diet and on daily shots. I have really wanted to go see her, but it hasn't been possible becasue of the distance. I am so glad she is still alive. My children are her first and only great grandchildren and she just loves to just sit and watch them.
Generally, life is going well for us. It has been sunny, so we have spent a lot of time outside playing and doing therapy. My husband graduates FINALLY in about a month and then we will see him more often!!!!!!!!!! I am over whelmed with the eating issues, but I will get a schedule planned and going soon. If anyone has any suggestion on foods or dishes that may work I would love the advice!!!
I feel blessed and lucky to have the family I do, despite the stress and many medical issues, they bring me more happiness than I could have ever hoped for. My life would be so empty without them....even Jacob my son in Heaven. Even though he is not with us, his short life and the memories we have of him influence and brighten every day.
Thanks for reading,
Tiffany
It has been quite a while since I posted last. So much has happened. We did move and it is such a releif to not worry about mold hurting the kid's lungs. We love our new house and we have wonderful neighbors all around.
We have taken Joshua to see his eye doctor and she dilated his eyes to see if his prescription needed to be adjusted. Well, she was surprised. This is the second year in a row that his eyes have actually improved. I don't know how many of you know about ROP, but improvement really isn't supposed to happen. Usually the eyes are supposed to get worse. Joshua's doctor can't believe that his eyes are as good as they are for how severe the ROP was. He still has a high prescription and can't see as well as most even with the glasses on, but the fact that he can see and is improving is a miracle!
We took Joshua and Hannah to their lung doctor recently too. they upped a few medications and lowered a few.
We also took Josh to the feeding clinic. We found out a lot of things. The evaluation was long and involved four different people. After it was over and they talked with us, they told us that they have never seen a child having such a difficult time eating and trying so hard! I couldn't believe it. These are specialist that work with many out of town families such as ourselves. Out of all those kids Joshua has the most difficulty?! I felt really bad like I did something wrong.
We actually had done almost everything they suggested, but we are making some changes. I just thought these eating problems were a way of life.
Every system is involved with Joshua's eating issues. We had to go go buy special chairs and a table, get special straws, feed every 2 1/2 hours but only allow 30 minutes for each meal(that is more feedings that I gave to my full term newborns!). A major issue is the processing. I need to become a different kind of cook. Every meal we need to offer one easy to eat, flavorful, full of calorie dish first. After he eats that then we offer more things one at time until at the end of the mean we give him something like an apple slice to practice chewing, but doesn't need to give him any calories. We also need to offer his high calorie drink. If I make any meat it needs to be the consistency of already chewed meat, so it falls apart in his mouth. I need to add more gravies and sauces to add calories. I am a no dressing,no sour cream, no mayo type of person...this is so foreign to me!! My husband can't eat like that or he will gain too much weight and too fast. The other kids are skinny enough that eating like Joshua does isn't a problem. It would be really easy to just go buy all the processed meats and foods because they are easier to chew, but I don't want to clog up his veins with cholesterol since we have a family history of diabetes (three of my grandparents, my husband's dad and grandmother.) If I sound overwhelmed it is because I AM!
The speach therapist who evaluated him told us that with the way his mouth and tongue are shaped and working(toungue movement issues) that is is amazing he can talk so well. She said that he should only be able to say his vowels and a few baby constenenst(M, B). He is truly a miracle.
My grandmother had a stroke and a heart attack a few days before we moved. It has been very hard on my family(extended). She just had eye surgery yesterday. She can't walk yet, but can talk and just got home. She is on a strict diet and on daily shots. I have really wanted to go see her, but it hasn't been possible becasue of the distance. I am so glad she is still alive. My children are her first and only great grandchildren and she just loves to just sit and watch them.
Generally, life is going well for us. It has been sunny, so we have spent a lot of time outside playing and doing therapy. My husband graduates FINALLY in about a month and then we will see him more often!!!!!!!!!! I am over whelmed with the eating issues, but I will get a schedule planned and going soon. If anyone has any suggestion on foods or dishes that may work I would love the advice!!!
I feel blessed and lucky to have the family I do, despite the stress and many medical issues, they bring me more happiness than I could have ever hoped for. My life would be so empty without them....even Jacob my son in Heaven. Even though he is not with us, his short life and the memories we have of him influence and brighten every day.
Thanks for reading,
Tiffany
COMMENTS
- Mar 30, 2007 4:37 AMIt sounds like you have a lot on your plate right now, I am sorry it is all coming at once.I hope Joshua's feeding issues get better through the trial and error process, I'm sure it can be frustrating, hang in there.-Shonda
- Mar 30, 2007 9:32 AMSounds like you have a very full appointment. That can be overwhelming, but it sounds like you have a good plan in place.I hope all continues to go well, and Joshua adjust to his new eating routine.Take care,Karri
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