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Monday, January 14, 2013
Cardio Update
On January 9th Ben had his cardiologist appointment. His oxygen was in 78% which is good for him. He is now a little over 25 lbs., and handled himself the best we ever had at his appointment. Although the ekg always makes him terribly upset. He tried to pull the cords off while he was crying. His lips turned quite blue. :( After that he calmed down and enjoyed the company of Dr Lacina. They played with some toys together. Everything is looking stable on Ben's end. The surgery is estimated to be between the age of 3-4 for Ben and we should come back in April/May to get checked again. Dr Lacina filled me in on the reasoning, and made me feel good that all my concerns were normal. Ben waved goodbye as we left and we are looking forward a few more months of working hard on his motor skills before he get the set back of a surgery. Please keep us in your prayers.
Sunday, December 30, 2012
Happy Holidays
Hello All,
It has been way too long. Benjamin is doing good. He is now going to Mary Free Bed for additional therapy to the Early On therapy. We are seeing a real difference in the use of Ben's left arm and leg. We also had the pleasure of seeing Ben pull himself up next to the couch. He is a very determined and stubborn little guy. His daycare and I are discussing moving him up to the toddler room. He is already sleeping on a cot verses crib and it would help with his vocabulary. Plus it will be better for him to use the gait trainer in that room, since he will be using it at the center to move around on his own. We will be seeing the cardiologist in the beginning of Jan to get his heart checked again, and we are hoping things are doing well. It seems to be from our standpoint. Right now he has a ear infection, but is happy guy for the most part. Allison is also doing good. In November she decided to cut her own hair, but it is growing back slowly. She promises not to do it because she wants long hair again. She is looking forward to starting Kindergarden in September. She keeps asking when she is going to Coopersville.
Here are few photos. Please enjoy and have a very Happy New Year.
It has been way too long. Benjamin is doing good. He is now going to Mary Free Bed for additional therapy to the Early On therapy. We are seeing a real difference in the use of Ben's left arm and leg. We also had the pleasure of seeing Ben pull himself up next to the couch. He is a very determined and stubborn little guy. His daycare and I are discussing moving him up to the toddler room. He is already sleeping on a cot verses crib and it would help with his vocabulary. Plus it will be better for him to use the gait trainer in that room, since he will be using it at the center to move around on his own. We will be seeing the cardiologist in the beginning of Jan to get his heart checked again, and we are hoping things are doing well. It seems to be from our standpoint. Right now he has a ear infection, but is happy guy for the most part. Allison is also doing good. In November she decided to cut her own hair, but it is growing back slowly. She promises not to do it because she wants long hair again. She is looking forward to starting Kindergarden in September. She keeps asking when she is going to Coopersville.
Here are few photos. Please enjoy and have a very Happy New Year.
Monday, October 1, 2012
Great Eco!
Hello Friends! I just wanted to report that Ben's Eco came out great. His heart
function is unobstructed. His atrium and pulmonary are doing good and
his has no significant leaking problems. He hated the IV and fussed
until his medication took effect, then fussed again when he woke up
until the nurse took the IV out. He is resting right now and should be
back to himself later this afternoon. The surgery will be when Ben is
between 3-4. Allison ran into the tailgate of Dan's truck on Sunday and
has a black eye. :( She is recovering well. That is my update for now. I
feel blessed! Here are some pictures to enjoy.
Tuesday, September 25, 2012
Strength in Benjamin!
Benjamin is so strong! He makes more stronger every day that passes. He is doing pretty good and is very happy boy and knows what he wants. On October 1st we are going to have his sedated Eco to see how his heart is doing. It always makes me nervous to have these tests, because I just want to have good results. He continues to do therapy two days a week. His cerebral palsy is frustrating to him at times, and boy does he have a tempter. He is starting to sit for periods with no support and is getting better fine motor skills. His left hand/arm is his weakest point and we work on it daily. The therapist's want us to talk with the neurologist on Nov 5th about the possibility of a wheel chair or device to help Ben. Something that is bus accessible. He will be going to therapy outside the home when he is about 3, and this will be helpful to him. I plan to write more after I know the results of the Eco, so please stay tuned. Thanks for all your support!
Wednesday, July 18, 2012
Hello All,
As you may or may not know Allison and Ben had a cardiologist appointment on July 16th. Allison's was for a heart murmur that has been concerning since she was 16 months old. They thought that she could have a hole between her two upper chambers that may close on it own or could present problems later in life. Benjamin's was in for his HLHS as usual. I have not said a ton about Allison's issue we have been monitoring, because I was so hopeful that it was nothing in fear that I would have to kids with heart problems. At their appointment our fears were put to rest! Dr Lacina did both of there ekgs and listened to their hearts. Allison's murmur had changed, and he said this sounded good to him. He wanted to a eco immediately so that we could know for sure and it came out good. Allison will only be visiting Floor 10 as a visitor from now on. It looks like Benjamin is still on track. We have no changes to our plan. He is going to have a Sedated Eco September/October. They estimate his Fontan Surgery to be Summer/Fall 2013. Thanks again for your thoughts and prayers!
As you may or may not know Allison and Ben had a cardiologist appointment on July 16th. Allison's was for a heart murmur that has been concerning since she was 16 months old. They thought that she could have a hole between her two upper chambers that may close on it own or could present problems later in life. Benjamin's was in for his HLHS as usual. I have not said a ton about Allison's issue we have been monitoring, because I was so hopeful that it was nothing in fear that I would have to kids with heart problems. At their appointment our fears were put to rest! Dr Lacina did both of there ekgs and listened to their hearts. Allison's murmur had changed, and he said this sounded good to him. He wanted to a eco immediately so that we could know for sure and it came out good. Allison will only be visiting Floor 10 as a visitor from now on. It looks like Benjamin is still on track. We have no changes to our plan. He is going to have a Sedated Eco September/October. They estimate his Fontan Surgery to be Summer/Fall 2013. Thanks again for your thoughts and prayers!
Thursday, June 28, 2012
Hello Friends and Family!
Benjamin is doing well. I have a few things to report. My cousin sent me her gait trainer her daughter cannot use anymore. (Thanks to my Uncle Tim) It is a walker to help children learn to walk. Benjamin did not like at first and we just put him in it for a little while each day. We have it in the basement because it is tiled down there and is easier to move for Ben. He took a few steps in it the other day. :) He is starting to like it.
His favorite word is Ah-Oh as he tosses food on the floor, much to my dismay. He is talking so much more right now and repeating adults. Sometimes you can really understand him and sometimes you don't. He has a cardiologist appointment on July 16th and hopefully things are going well. They seem to be anyways. He is still working on sitting. We are also working on his left leg and arm with the therapists and his caregivers. We are keeping in from the heat because he does not do well when it is really hot. He is a hot body to begin with, because he is not able to dissipate the heat like we do.
Allison is adored by Ben. He follows her everywhere. He can even say Ally. They are both looking forward to celebrating their birthdays. Allison's is July 3rd and Ben's is August 13th. It is amazing the Ben is already almost 2. Thanks for your thoughts and prayers.
Benjamin is doing well. I have a few things to report. My cousin sent me her gait trainer her daughter cannot use anymore. (Thanks to my Uncle Tim) It is a walker to help children learn to walk. Benjamin did not like at first and we just put him in it for a little while each day. We have it in the basement because it is tiled down there and is easier to move for Ben. He took a few steps in it the other day. :) He is starting to like it.
His favorite word is Ah-Oh as he tosses food on the floor, much to my dismay. He is talking so much more right now and repeating adults. Sometimes you can really understand him and sometimes you don't. He has a cardiologist appointment on July 16th and hopefully things are going well. They seem to be anyways. He is still working on sitting. We are also working on his left leg and arm with the therapists and his caregivers. We are keeping in from the heat because he does not do well when it is really hot. He is a hot body to begin with, because he is not able to dissipate the heat like we do.
Allison is adored by Ben. He follows her everywhere. He can even say Ally. They are both looking forward to celebrating their birthdays. Allison's is July 3rd and Ben's is August 13th. It is amazing the Ben is already almost 2. Thanks for your thoughts and prayers.
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