Hi everyone!  I know we haven't updated Cooper's section in a while.  There is so much going on where do you begin and when do you find the time to post it?  I will do my best.


Here we go... 

As of this week he is 7 lbs, 18 3/4 inches.  Our most immediate struggle has been his weight.  Every day we try to feed him from a bottle, then he gets the rest through his feeding tube.  He has begun to have reflux which has made him refuse the bottle.  Poor little guy, who wants to eat if you know it will hurt when it comes up. We have him on a high calorie formula but with the reflux it has been a struggle to get him to gain weight.  We have been playing with different formulas and medicines and in the past 2 weeks he has gained 11oz.  We are really happy with this amount of weight gain and hope it continues.  He has gained almost 3 lbs since we left the hospital and his face is filling out and he actually has a few rolls on his legs:)

We have met with many of the specialist that will be working with Cooper and we are very lucky to have such good doctors here in Grand Rapids.  Coopers next surgery on his colostomy will take place around 6 months.  His cleft palate will be repaired around 1 year.  One of his hands will be straightened before he is 1 with the other hand following it.  They do these is in stages as the hand needs to be in a cast for 6 weeks following the surgery. 

Cooper had another brain ultrasound that showed his brain tumor has not grown.  This is good news and will followed up with an MRI in several months.   They will be doing more genetic testing on him as they are concerned that the brain tumor suggests that he has an additional genetic mutation called Tuberous Sclerosis Complex (TSC).  We are of course hoping this comes back negative and ask for prayers regarding this. 

He will be going in for a BAER hearing test in April.  This test will determine if he has hearing in his inner ears.  They were unable to test him in the office since his ear canal was to small to fit any of their equipment.  He is going to be fitted for a bone conduction hearing aid, also in April.  This hearing aid is on a head band and is placed behind his ear.  It uses his skull to amplify the noise to his inner ears.  We do not have an appointment with the opthamologist until May but he seems to be looking at and tracking objects. 

Coopers Hemotologist is wonderful and his blood counts are normal, which is what is expected at this point.  He will have to have his counts done before surgeries otherwise only once a year until he is five.  Between ages 7 to 12 is when they begin to see problems with blood counts.


Most days we have a great outlook and Cooper is just a regular newborn with regular needs.  But on a day filled with appointments when your reminded that Cooper is not in fact a regular newborn it is tough.  We take each appointment as it comes and try to give our worries to God.  He is faithful.   

We have begun to see some progress with his development.  He has started making baby noises & facial expressions.  We have seen a smile.  A moment all parents can't wait for.  He is moving his arms and legs and really gets them going, he is quite the wiggle worm.  He loves to have his pj's off  and likes bath time with warm air from the space heater blowing on him.  He likes raspberries blown on his forehead and to be held.  He is very content and sleeps alot (what a blessing with two other kids that need mom).

We are so thankful for our beautiful baby boy.  We are also thankful for everyone that continues to pray for our family and gives us the support we need to get through the rough spots.  Bless you!








 

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