Michael's story

This is the story of our son Michael and the ups and downs but most of all how blessed we are to have him…

It all began when I became pregnant with Michael, I was so happy and thrilled about have a baby boy, this was not my first pregnancy, and I had a baby girl when I was 16. My pregnancy with Michael was trying; I was hospitalized quite a few times for having contractions early on. That began when I was about 5 months along. Bed rest and medications to help stop them. The rest of the pregnancy went along like it was suppose to.

When I was 35 week the doctor had done an ultrasound and told me that Michael would be about 6 pounds at birth and everything was going well. I went into labor with him at 37 weeks, I had poloyhrdominos but they did not realize it until they broke my sac of water and it went from the window in my room and out to the nurses station. My doctor was in the room at the time and he could not believe how much there was.

I went thru 24 hours of intense labor (all I had was morphine & Demerol) with 5 hours (my daughter took 3 hours and I pushed twice) of pushing.  They were getting ready to take me in for an emergency c-section if the vacuum did not work, finally after three tries with it, Michael was born!

He weighed 8 pounds 5 ounces, was 21 inches long and 13 ¾ head and chest circumfrence. He was immediately taken and put on a breathing machine was transferred to NICU in Columbia, Missouri.

Michael was jaundiced at birth, he had a heart murmur and we were told he had pneumonia. He stayed in for two weeks.  Then we took him home for two weeks until he started having seizures and he went back in for 2 weeks. EEG was abnormal, at that time they did not do a MRI. He had blood work, spinal taps...ECT to try and figure out why he was having seizures they never found a reason and Michael was released with the diagnosis of Infantile Spasms.      

Michael started with lots of upper respitory and ear infections and what we now know as Failure to Thrieve. At four months old, he weighed 12 pounds, he would drink fine from the bottle but when we started solids he would gag, we would dilute the baby food with formula to try and get him to take it.

It was about this time he started to drink 2 quarts or more of Enfamil every 24 hours and he still did not gain weight fast. His pediatrician was not worried about it at the time because she figured it was from his seizure medication. Then at 10 months old he got very sick, he was only weighing 14 and dropping rapidly. He went into the University of Missouri Children’s Hospital again for a week, after being tested for Cystic Fibrosis came back negative. Michael was seen by a GI doctor and he recommended I try to get Michael on cereal in his bottles and warned me to feed him every hour to get more calories in him. He made me feel awful for working, like it was my fault at the time that Michael was sick so stop working and continually fed Michael.

I should mention that Michael did not crawl until he was 10 months old and it was more of pushing with his lower body and his arms pulling. Michael first smiled about 4 months, said his first word at about 18 months old: mama, and he did not walk until he was 2.

Finally, Michael’s ped decided he needed to see a Genetics Doctor. We saw Dr. Judith Miles in July 2000. When we went to see her (after sending in tons of paper work, symtoms, ECT) she diagnosed him with Costello Syndrome. She has been a true blessing in helping us get Michael what he needs and was the first doctor to really be determined to help Michael. She referred him to a new GI doctor, a pulminologist, developmental specialist, and ENT. At one year Michael had his first set of ear tubes placed. It turned out that Michael had/has Gastreialesphigaal reflux disease, severe asthma.

For the past few years Michael has had numerous ups and numerous downs. Michael got involved with the Special Learning Center for special needs kids; he received PT, OT and Speech there. Since 2000 Michael has had 8 sets of Ear tubes, numerous upper resp. & pneumonias. Michael has gerd, severe asthma, early onset of precosis puberty, severe oral motor sensory issues, chronic ear infections, irritable bowel syndrome (oh yes it comes from both ends!)

Sleep disorder and epilepsy. Michael had a MRI in 2000 that showed extra fluid on the right ventricle of his brain. Michael is scheduled for another MRI June 2006 to check for hydrocephalus, also will have a g- tube placed in the next week or two. Michael has taken his pediasure in a bottle, he has severe gagging when something touches his lips he can only drink water from a cup without vomiting. Michael receives PT, OT AND Speech therapies. Michael functions mentally between 18 months and 2 years old.

Michael has the best personality. He doesn’t like to be around big groups of people but he gets to know you boy is he a goof ball. He loves to laugh and to make people laugh with him. He LOVES to go to Six Flags and ride the “fast trains”.  He loves Macaroni and cheese and cheeseburgers. He is almot obsessed with busses and trains as he has about 30 of each and collects Thomas the Train. He has a cat named Lily, and he likes to play with his sister. He is the most loveable little boy and is always wanting a hug or kiss from me. He makes my day bright. I would be lost without my Michael. He will be in the second grade next year.  

As for our family, we live in Osage Beach, Missouri which is the heart of The Lake of the Ozarks about 200 miles from St.Louis and 300 from Kansas City. Besides Michael we have a daughter, Isabella, who is four years old. She likes to sing and draw. She is a talented artist at her age. She will be in the Chapter 1 Preschool for our school district next year; she does have a speech problem due to being with Michael all the time. They have their own language.  Through the support group and our family we have been blessed with an amazing amount of compassion, love and friendship. The Costello Support Group is not just a support group but in truth a family and we love each and every one of “our kids”, parents, caregivers and doctors.     

Brandy, Mike, Michael  & Isabella Weber

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