new pics and an update

Sacked out boys.
Ornery boys.

Cool boys.

WOW, look at all the bubbles!

This is so cool.


Just a few pictures to update you of all the fun we have been having.

Carson had a rough month in March. We had to hook him up to oxygen several days for only a few hours a day...he was having a tough time breathing and his O2 sat dropped to 84, that was the lowest we saw. However, because we have O2 tanks at home, we did not have to go to the hospital...this helped a lot. Jeff took Carson to the pediatrician on March 31, we had to use O2 several days in a row and Carson was not getting better on his own. The Dr. put him on a steroid called Predisolone for 5 days to help him clear out his lungs. He was not ordered to have a chest ex-ray at this time (to look for pneumonia and RSV) as he had not been running a fever. We are watching this very carefully, Carson is getting better by the day, we did not use any O2 today (4-2).

Carson also had some bad seizure days in March, we think this was due to switching his Phenobarbital from a compounded liquid to pill form. The body can metabolize them differently. We are in the process of switching back to the compounded liquid form. In the mean time we have increased his Clonazepam to control the seizures a little better. This seems to be working for the time being. For a while his seizures would wake him up about 3:45 every morning...needless to say, Mom and Dad did not get much sleep during this time...we are still trying to catch up.

We have also had some very awesome days...he loves to play with the bubbles and to feel them pop on him. Carson also still enjoys his baths. The boys that I watch during the day are beginning to interact with him more and to bring him toys and play with him. Carson very much enjoys this. We were all playing with bells, musical bells in different pitches, and Henry and Carson were sharing the bells and just talking back and forth to each other. Carson was getting so excited that he was trying to stand up in his kid cart...so wonderful to see. During that moment of that day time just stood still. A time to cherish forever.

We believe Carson is teething again, so he was chewing on a frozen teething ring (we were helping hold it in his mouth) when he began to suck on it! I quickly got a little bottle of apple juice and gave it to Carson. Carson also sucked on the bottle, to give you perspective of this amazing feet, he has not sucked sense the beginning of December. Wouldn't you know...it made me cry. I do also have to say that we were very careful while doing this, his nurse was there keeping a close eye, listening, feeling and watching him swallow so he would not aspirate. It was just amazing.

Well that is enough for now. We continue to take care of each other and live day to day. I will end with a new prayer we received and now say every night before bed.

Enjoying a Life of

Health and Healing

Lord, because You have instructed us in Your

Word that we are to pray for one another so that we

may be healed. I pray for healing and wholeness for

Carson. I pray that sickness and infirmity

will have no place or power in his life.

I pray for protection against any disease coming

into his body. Your Word says, "He sent His

word and healed them, and delivered them from

their destructions" (Psalm 107:20)

Wherever there is disease, illness, or infirmity in

his body, I pray that You, Lord, would touch

him with Your healing power and restore him to total health.

___________________

Confess you trespasses to one another, and pray

for one another, that you may be healed. The

effective, fervent prayer of a righteous man

avails much.

James 5:16

GOD BLESS and AMEN