IOGA

International Organization of Glutaric Acidemia

Annual Golf Outing

Calendar of Events

There are no events at this time
Chloe PDF Print E-mail

Our story begins on September 16, 2000 when Chloe was born. She was 6lbs, 7oz and was presumably healthy. She had a good apgar score except for her temperature was a little low, so they took her to the nursery for several hours to bring it up. All that aside, she and I went home like normal and for the first few days, we were happy, but then came the colic. We went to see the doctor and he said it was normal that some babies just get colic. So we went home once again and for several days, we dealt with it an the constant spitting up. After several weeks, we took her back in and they decided to put her on soy-based formula. Things seemed to be going very well for a month or so and then she got sick. She got pharyngitis and we took her in. The doctor again said that these things happen and we went home again with some antibiotics. Things were well for awhile but she still constantly spit up. She seemed to be progressing like normal and we were told that all babies progress at different times.

We were very happy. About a month or two after Chloe was one we took Chloe to the emergency room because she was vomiting blood. Once again, the doctors made us believe our concerns were unwarranted. The next day at her pediatricians, we were told that she was indeed vomiting blood but that it sometimes happens when infants get the dry heaves.

When Chloe was 28 months old, we noticed that she was a little shakey, kind of like Parkinson's, and she was not even trying to walk. My husband said that he thought somethign was wrong but I was in denial. I was so scared I did not know what to do with myself. My perfect little angel from God had something wrong and we had no idea what was wrong or how to help.  The pediatrician - a new one- said that she found our concerns to be warranted and referred us to the school district, which would run tests to see if Chloe needed to see a specialist. Thank goodness for thos people. Chloe was referred to a specialist and he told us that he believed she had Cerberal Palsy. Well in non-professionals' terms thats huge but in doctor's terms, it is an umbrella term, which all developmental disorders fall under. He neglected to share that information with us. He told us that she would never get worse, and that she could get better. Finally Hope. We found out that we were pregnant and two months later due to all of the stress- I lost the baby. In June of 2003, the unexpected happened- our little girl almost died.

We  went to wake her up one morning only to find her seizing. Talk about your heart beating so fast it could possibly beat right out of your chest. We got her into the car and sped to the ER. I am so thankful for those people because the on call pediatric physician said that she was stable but he wanted her to get the best treatment possible and Chloe and I were life-flighted to Portland, OR, to Doernbechers Children's Hospital. We were about to get the biggest shock yet. It took them almost a week to find out what was wrong, meanwhile Chloe was so drugged that she hardly slept and was on a resrticted food diet. I do not think that any of us slept. Four days into our stay a metabolic specialist told us that Chloe had GA1. Talk about a bomb dropping. We had no idea how this could happen. We were told the details that my husband and I both had the faulty gene and so we passed two faulty genes onto Chloe. We were also told that we had a 1 in 4 chance that any future children would have GA1. The doctors were so baffled that Chloe, who would not eat meat and always ate a lot of carbs, survived her misdiagnosis. It was simply her body telling her that she did not want to eat meat because it made her feel bad. We were devestated but at least we had an answer.

So, where do we go from here? Well these doctors did not want to give us a prognosis for the future because all GA1 kids are different and because she just astonished them. So we learned that she would be on carnitine for a long tiem and that she could not eat more than 24 grams of protein a day. Oh my gosh- that is so hard. But ater a yearwe have learned that miracles happen every day because before the incident Chloe didnt walk and she only said maybe 4 words.

Now in Sept. 2004, she says sentences and she can take about 15-20 steps unassisted. She is so smart and she has opened our eyes to a different world. She is happy all of the time even when we take the many trips to the hospital- because she gets the flu every 3 months. But what I want for all the other parents out there new to this is that no one can say what will happen in the future, if you have faith in anything than you can make it happen. Dont ever give up hope because kids are miraculous and can do the impossible with the right help

 
Joomla 1.5 Templates by Joomlashack