Hello All,
The last few days have been packed with many things and beautiful weather. Benjamin had a shallow test at Mary Free Bed and he is having some trouble with chewing up his food correctly. He tends of shallow whenever possible because of the weakness of his jaw muscles. This is part of his Cerebral Palsy. We are going to start a six week chewing therapy for him, because we do not want him to choke. He still is having trouble with his left side and we plan to do more therapy with it. Although he is really becoming more active and mobile. Ben is not walking, but he still gets around. He are really noticing him being bluer looking because of him being so active. Also he is growing so long. On Friday we went to Orthoseat at Mary Free Bed and Ben is getting a bus accessible stroller to go to the Ottawa Area Center this summer if his surgery does not get scheduled for then. But we are hoping it gets scheduled for sooner than later due to Ally starting Kindergarten this fall. Things are going good, but we are so busy with Ben's therapy. We may think about Botox therapy in the future as well. We went to Faith's Walk on Saturday to support heart children and the continued research to make there lives longer and better. Pictures are still to come because I am having technical difficulties, but here is a older cute one.

Delayed Post

Hello,
Sorry for my delinquency on this post. My excuses are vast, but I still should be posting more regularly. I will also get some pictures up in the next few days. We went to the Fredrick Meijer Gardens on Saturday. :) We have not had any huge news until today. Ben had his cardiologist appointment. Dr. Lacina feels that it is time to start the process of scheduling Ben's Fontan surgery. It should be this fall 2013. Ben is getting bigger and becoming more active. He is blue looking more than he used to be. It is just getting to be time to start the next step. I am kinda in shock, although I knew it was coming. It is a hard thing to get scheduled. Below is a link showing some videos and explanations of the procedure if you are interested.

http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html

Please keep us in your prayers. I will post again soon with updates on more appointments this week.

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.

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.

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. 

 

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!

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!