Wonderful Days and Sleeping Nights

Well, We have had a wonderful weekend and three days. Corbin's rash disappeared after several days of large doses of antihistimes. We are not sure of the cause, no virus or infection could be found. We did have him tested for allergies but did not find anything that could have caused this. According to the test, he is allergic to everything outside and cats, dogs and dust. Wonder he can even breath! Not sure I really believe what they are saying!

Anyways he is doing great. We have had him back in his own bedroom again. He is sleeping almost through the night leaving me to get up only twice to three times. This is just amazing since he was sleeping so little before. He is also making great strides in development. He is walking along furniture and will hold on with only one hand now verses the death grip of two hands. He still has very little balance but with much therapy he will get there.

Physical therapy and all services are canceled due to insurance problems so we are not sure when we will see anyone again. Early on services even though they are through the state go by income. So they feel we can pay the 375.00 a week for services. We are also fighting for Corbin to get his RSV shots this winter. The RSV is a virus that attacks the weaker immunity children or elderly and can cause serious problems (ie Hospitalizations). So we are working on getting that as well.

Grandma and Gary we finally got Travis in to the Doctor and they have referrals to have the episode checked out with some other doctors. So we will keep you updated. He has not had any other problems or symptoms, so we are sure it was all stress related. Not that he could possibly have been under any stress back in February, (New Job, New House, Cleaning out Apartment Rental, out of town for Conference, Son placed back in hospital for drug poisoning and kidney failure) No there was no reason for him to be stressed!

Gunnar is doing wonderful in homeschool. He loves his satellite classes and his "teachers". He is reading lots. We went to the library today and checked out books that he could read! We even got him a library card as well. He was very excited about that.

Aiden is doing great too. He is learning his letters, can write his name and has beautiful handwriting! He Loves school and sending out his school papers as little letters for the family.

Brodie loves his new room! Playing in it with his little brother. This has helped him tremendously! We were really struggling with lots of behavior with him. It is not that he has had it easy by no means. From the time he was 9 months old to 2 1/2 we barely got to spend any time with him do to so many illnesses or problems within the family. The new room has made him feel like a big boy and a helper to his brother whom he would many times try to lash out against whenever I was not looking. Thanks to Jennyce and Judy for coming and setting it all up. What a great amount of work you all did at such a short time.

We are having a wonderful end of summer and fall. Pray for continued health for Corbin and family. That Corbin can go all winter without any hospitalizations!
Much Love,
Terri and Family

Oh Spotted One

Well, we are trying to figure out what could possibly be causing this rash that overtook Corbin on Wed. He woke up with a few spots on his face and neck then an hour later it was all over his body. We are not sure of the cause. We have not added any new foods so it is not real sure about it. He has not had a fever or any other symptoms of a virus. The fear is it may be by some of his new heart medications which he really needs.

He is currently on Atarax every four hours to try and keep this away.

Praying we get relief and see our beautiful son spot free soon and find the culprit to these spots.
Terri and Family

Exhaustion

After a few rough weeks of little sleep, Travis and I made some changes for Corbin and where he would sleep. We have had him sleeping next to us in his crib since we brought him home. This was largely due to his many medication needs, pumps and tubing. Over the months this has gotten better. We only have one medication to give at night and one time to refill his food bag. So we have gotten much better about night time needs. The problem is that Corbin does not sleep well. On average he can wake up 5 to 7 times a night. They never seem to coincide with his meds or food change. Leaving me to be awake most of the night. Every book you read on Baby's and sleep says to NEVER have cords or things in their crib that could cause them to strangle themselves. Yet, Corbin's crib holds his oxygen tubing, his feeding tubing, and his feeding pump which is plugged into an outlet! His sleep situation has always made me nervous, especially as he becomes more mobile!

After much prayer and faith we have placed Corbin in his own room with Brodie. We are using swimming noodles to prevent him from strangling on his cords! Last night was the first night Corbin has ever slept in a room without an adult! He did fairly well. I was only up a total of seven times. Five times for him waking and twice for his food and medications. Then this morning Brodie woke up and asked for Corbin to play on the floor of the room with him. They played for a total of 20 minutes! It is wonderful to have a room that is safe for him to be in and for Brodie as well.

We are praying that this continues to go well. That this will help Corbin sleep better at night as well as myself.

Corbin otherwise is doing well. We have noticed that he may have an abscess or small infection on his chest near his incision. It started out pinhole in shape and has slowly gotten bigger. We are treating it with antibiotics. He has started a new phase of not eating. So everything is back to being tube fed. Like many babies they go in phases. Just seems to be more noticeable with Corbin when he stops. Makes things a little more challenging here at home as to what is normal or related to his heart defect and GI issues.

Thanks for your prayers,
Terri and Family

Hi Every One

Well I think I finally have this working and the links all correct.

We had a great week. We are really getting the hang of home schooling Gunnar and Aiden. Gunnar and Aiden are both doing a home satellite program through Bob Jones. I am having fun doing it with them and watching Gunnar's progress. He is reading tons and even writing some great stories.

We had a few laughs at Travis this week. Gunnar made a puppet during class and was showing it off to Travis and I. It had two goggle eyes, a tongue and ears. Travis asked Gunnar "What is it?" Gunnar replied, " A Sock Puppet!" Then preceded to walk away saying "Geez Dad!"

Later that same day we were driving along and Gunnar spotted a huge clock. He asked what time it was. Travis replied its broken. I said no its 2:00. Travis replied no its broken the big hand is on 12! We are still working on time telling with Travis hopefully soon he will get it. But to his defense it was a clock with roman numerals.

Corbin is doing very well. We had a cardiology check for blood pressure this week. It was supposed to be just a quick check when it turned into a four and a half our check up. We kept getting a 40 degree difference between his arms and legs which can suggest a blockage somewhere. Just two weeks ago he only had a 10 degree difference which is completely normal for a baby with HLHS. So we went for an EKG and an ECHO. They were unable to get a look at the aorta which is what may be causing the problem but on Doppler they did hear that the difference is not so significant. So he will be going weekly for quick blood pressure checks to monitor it for a few weeks.

We finally also heard back from U of M. They said it was ok to wait and not do any surgery for a while. So we will just enjoy the winter.


Corbin is finally going to the bathroom with more consistency. We would like to ask that you continue to pray that he gets good rest. We are still not sleeping the way he was. Otherwise he is doing wonderful and making some great strides. He is signing lots of words, eat, more, full, ball and Dad. He says Dada, Mama, and Oh Oh! He is walking along furniture now and pulling up on everything. We have begun taping his oxygen to his back so he will not trip over it. He is only on his feeding pump two to three times a day, and hooked up at night for only 7 hours now. He has made it to the 19 lb mark! We are so excited over this progress!

Let us know how you are doing as well. Leave us a message! Gunnar, Aiden, Brodie and of course Travis and I love to read your messages!

May God Shine his Face upon on this glorious day.
Terri and Family

Aiden, Corbin, Gunnar and Brodie!!!!  

My new mini backpack feeding pump! No more IV poles! 

Look I learned to Crawl!!! 

New Website Set Up

Hi Everyone,
I wanted to see if this would work. We are trying a new format that will allow us to actually talk to all of you easily and be able to communicate via a blog. It is in the beginning stages so we will have to work out the kinks as we go.

Everyone is doing great.

Much Love,
Terri and Family