Saturday, December 31, 2005

The Last Day of 2005

Today is the very last day of 2005! As we close of this year we remember all of Corbin's wonderful accomplishments of this year. We are grateful for God's ever loving care of our family.

We also remember our friends who are in the same struggle as us. That are just going day by day and grateful just to wake up and be able to have one more day. Trying to forget that their is more surgery, further hospitalizations looming in the new year. We remember our friends who are still sitting in the chairs in the hospital just watching their child struggle to continue to live. We remember our friends that no longer have their children with them here on earth. We remember all of you who have stood beside us and prayed for our son's recovery and milestones. We remember and thank God that we remember it all. We pray we never forget so we can always live like we remember and treat each day like it is our last and live it for Him!


Monday, December 26, 2005

December 26, 2005

We are all doing very well. We had a wonderful Christmas with the family. It was great to see everyone ripping open presents. The boys told us about the very first Christmas. Then GrandPenny and Poppy came over. So we had round two with Christmas. Then after they left we had GrandPap and Grandma Sue over for dinner for round three. It was lots of fun.

Our relatives all could not get over what a wild little boy Corbin has turned into. He climbs onto anything he can make into a stool. He flips over my laundry baskets (laundry and all) and then proceeds to climb right on. He really loves to climb over the ottoman in the family room then fall into the chair so that he bounces on his face into the pillows. He has learned that my kitchen chair is also a small step ladder. He is always lifting the lid and climbing up onto it. We may have to remove it from the kitchen. He also has a fascination with my spice drawer. He loves getting into the spices and we have the proof of it too. A lovely picture of him white from head to toe of cornstarch! The crazy kid took it out and poured it all over himself before I could stop him. Then proceeded to try and eat it! He has no evidence of his oral aversion from one year ago! GrandPenny had the privilege of chasing Corbin, Christmas eve night at our church service. He was running all around and if you don't keep up with him for his oxygen he just rips it right out of his nose and keeps going! Nothing stops this little stinker. She redirected him from the stairs, the flowers, the signs and tried to keep his oxygen in too. I think she needed to rest after her hour of nonstop activity with Corbin! If anyone needs some additional exercise we know of a new weight loss program. Place a 20 lb oxygen tank on your back and keep up with a very active 18 month old at all times without knocking him unconscious as you bend up and down from the tank swinging around!

Corbin and boys are enjoying a relaxing week with Daddy. We received the unexpected surprise that he has this week off. All the time Travis took off for Corbin's doctor and hospital stays this year was never counted against him in sick or vacation time. The company (United Rentals) was really amazing and we are ever so grateful. So Travis has to use up some of his vacation time before the new year!

Have a great new year and God Bless.

We posted new video of wild man Corbin doing his new stunts!
Terri and Family

December 22, 2005
Merry Christmas to our Dedicated Followers,

I pray that this Christmas we all take the time to remember the true reason we celebrate, for the amazing gift God sent us, His son, who lived and died for us!

"But when he had considered this, behold, an angel of the Lord appeared to him in a dream, saying, 'Joseph, son of David, do not be afraid to take Mary as your wife; for the Child who has been conceived in her is of the Holy Spirit. She will bear a Son; and you shall call His name Jesus, for He will save His people from their sins.' Now all this took place to fulfill what was spoken by the Lord through the prophet: 'BEHOLD, THE VIRGIN SHALL BE WITH CHILD AND SHALL BEAR A SON, AND THEY SHALL CALL HIS NAME IMMANUEL,' which translated means, 'GOD WITH US.'" (Matthew 1:20-23)

This week we have had physical therapy, our pediatrician appointment, and our first appointment with speech. Corbin is doing very well. He has gained weight. We are over 20 pounds, finally. We had his second synargis shot to protect from RSV today. I really dislike having to put him through that shot. He always ends up throwing up and scaring the Doctor and Nurse. He stops breathing and he then begins to throw up and gets very very purple. The nurses alternate who has to be the one that has to give it to him. I feel bad for them as well.

We spoke to the Doctor about Corbin's new habit of drinking a bottle all night long to sleep, waking up so many times we lose count of how many times we have gotten up with him. We have tried the cry it out routine but that just ends up us changing many sheets due to him vomiting so much and him getting sweaty and shaky. Not sure at what point that becomes dangerous with his heart condition so we have decided to not even try anymore.

Corbin is making great strides in his physical therapy. He is now climbing up onto small steps and walking all over the place. His new speech therapist is very good. She herself had a daughter with hypoplastic left lung and a g tube. So she was very familiar with all of Corbin's complications. One of her first observations on Corbin is that his saturations drop while he eats his bottle. He needs more oxygen while eating so he can drink better. He works so hard on swallowing and sucking he still hasn't mastered the breathing part. We have also brought him back to the haberman feeder since he can only do an ounce at a time with the bottle. We will also be working on getting him to accept a cup with milk instead of a bottle. She is beginning to work on his speech as well. Our goal is to get him to begin to imitate sounds of babbling. Not sure I am ready for another person in the house that can speak. Corbin can make sounds, but he just has not made words or actively ever tried. He has shown no interest, but he does understand well. So we know that he is very capable of speech.

Travis is having a minor surgical procedure tomorrow. Please keep him in your prayers. Corbin has been the healthiest one in our family as our other three have caught and passed on colds. It is by your prayers he has been so healthy. Thank you.

Our next appointment is not until January 11th with GI. Then we have an 18 month well visit with Corbin that we have to make at some point early next month. His synargis shot for January will be after the 20th. So we only have three doctor appointments for Corbin and one for Brodie. Brodie has an appointment with the eye surgeon in January as well. Praying each of you, and especially those that have lost their little ones this year, May you all have a wonderful Birthday Celebration for our Lord and Savior. Terri and Family

Wednesday, December 14, 2005

Family Vacations

We made it back from vacation. Gunnar, Aiden and Brodie said it was the best vacation ever. We all(except Corbin) really enjoyed the water slides. Gunnar's favorite was the family slide that all could ride together on. Aiden loved the large water pail dumping on him in the fort. Brodie loved sitting on the beaver in the pool. There was lots to do. Corbin's favorite was the cub club play area. He learned how to climb the steps and slide down the slide by himself while we were there. We even spent a day visiting our family in Virginia Beach. They were able to meet Corbin for the first time and we met three of our cousins that were born since we had last gotten together.

As far as Corbin's health, he is doing very well. He has a weight check and synargis shot on the 22nd at the pediatricians office. He is doing much better on the neocate and his bloody stools are all cleared up. We have removed all his GI Reflux meds except the miralax. He is doing wonderful without them. He is on only five different heart medications. What a difference from 1 year ago! We do not see the cardiologist until February! We see the GI Doctors in early January. So we are beginning to slim down to once a month doctor appointments. Life is definitely getting easier here!

We are beginning to gather together our questions we need to ask about the next procedure for Corbin. So fellow heart mom's that have gone through the Fontan please feel free to give us your input. At Corbin's last Catheterization at 1 year, his pulmonary pressures were still in the 20's, with a shunt and on 1 liter of oxygen. (for the non heart community it is best to have them below 14) It is our understanding that the pressures are the biggest reason for failed fontan's so please give us any input and medical references so we can ask and research where we need to go next with Corbin.

Thank you for your support to our family. We are enjoying the wonderful season. We feel really blessed to have another opportunity to celebrate our Savior's birth as a family and at home once again. Please say a prayer for the many families that are in the hospital and have lost a loved one this year, as we pray they will especially feel God's love and care for them.

May you all feel God's love on this glorious day.
Terri and Family

Tuesday, December 06, 2005

Its Snowing!

Yeah its Snowing!!!! I love the snow. I love it that is until I am stuffing three little boys into their snowsuits and when I get the last one in the first one tells me he has to go to the bathroom! Then the rest of them do too and so we remove all the clothes and start all over again! No matter how many times we send them to the bathroom first it always happens that way!

Corbin is doing very well. He was placed back on oxygen full time. He just was not ready for the time off. In Gods timing we will come off the oxygen. We also had to take him off of Dairy products. We were making the switch to whole milk but he continued to show signs of distress that I did question but it was consistently pushed aside by the doctors. Finally when he started having large amounts of bloody stools did the Doctors agree that the first milk and dairy test must have been wrong and he is allergic. So we are back on Neocate once again.

We have finally made progress in the home health care delivery department. It has been a huge battle that we have finally found someone to help us. After calling our insurance agency and filing a formal complaint we received the necessary information on who to call (the department supervisor)to receive Corbin's oxygen. Preferably not at midnight as they have delivered in the past. We are finally receiving his monitor leads so we can accurately check his saturation's. We received a phone number where we can call to order his food, and g-tube supplies as they closed the department and FORGOT to disconnect the numbers and they were still taking orders over the voice mail. Yes, an entire department is closed and not one person wonders why they are not receiving calls from that area for over two months! Go figure!

Lattany is doing very well now. She is slowly beginning the weaning progress off the many breathing medications. She was able to attend part of church service yesterday, had lunch with us as well and attended Travis' birthday party. It was wonderful to see her up and about after her being so very ill.

Travis, I and the boys are going on vacation this week to Williamsburg. We are going to the indoor water park, the Great Wolf Lodge. We are looking forward to some down time where the older boys can really let loose and enjoy themselves. I have been catching up on my creative memory albums these past few weeks. I did not realize how hard of time it was for them when Corbin was so sick. I am glad that God allows us to forget these things, but looking back I realized how little they were especially Brodie. They really deserve this time to play and not worry. Gunnar and Aiden asked if Corbin would still be alive when it gets warm again. Would he be able to go to the pool again? I don't realize how hard this is on them at times. They are really great boys and never complain about all the attention that Corbin gets for his many needs. We are really blessed.

Every Monday I receive help from the most wonderful person. Jennyce, thank you so much for all you do for us. Today Jennyce helped administer Corbin's medications, helped hold him down while I did his blood test, we had to change his g-tube after realizing it was leaking all over him, fix lunch for the boys, made sure Corbin had his oxygen on as he traveled all over the house, made sure each boy was given individual attention by reading many stories to each of them, helped Gunnar with school, sorted out Brodie's clothes that fit and did not, helped me pack for our trip and do six loads of laundry. I am sure I missed some of what we did but just listing that exhausted me again! :) What would we do without you! You are our hero for serving us each week. We love you! I hope Jim and Johnny take good care of you when you get home. You deserve some pampering!

Thank you to all of you for your prayers and love for our family,
Terri and Family

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