Marathon Team 2017
AJ's Dream Team
As you all know, AJ was admitted to Lurie's, not once but TWICE. On January 27, 2017 at only 4 months, he was admitted to the epilepsy center on the 19th floor because he started having seizures. Infantile Spasms are a very rare form of epilepsy found in infants, only about 2,500 babies are diagnosed in the U.S each year. that, Unfortunately, children who develop IS are at great risk for developmental disability and autism, but some children will do well if they are treated early. The seizures come in clusters of 5-20 seizures in a 10-20 minute time span. Because the spells may be subtle, the diagnosis may be delayed for weeks or months. Luckily for us, we caught it early enough and started treatment the very next day after the seizures started. AJ was started on a steroid shot called ACTH along with some vitamins that he responded amazingly well to. The doctors did not stop there, however. They did a numerous amounts of tests, determined to find out why out perfectly healthy baby started having seizures. Although the tests did not show any reasons for the seizures, the doctors told us not to be discouraed. The majaority of cases of IS were the child is healthy and shows no underlying cause, are the ones with the best outcomes.
Unfortunately, while AJ was on his steroid shot his immune system was compromised so we hit a bump in the road towards the end of the treatment. On February 17, 2017 AJ started running a fever and stopped moving his right arm and was having visible pain on his upper right body. We immediately brought him to Lurie's Emergency Department where they came to the conclusion that he had a severe ear infection. However, after his 3rd day on antibiotics and still being in pain, Lurie's admitted him to their Infectious Disease department, where they ran tests to figure out why my baby was in so much pain. They eventually found out AJ had somehow contracted Osteomylitis, a rare infection of the bones in his arm, collar bones and top of his spine. They started him on IV medicines and placed a PICC line so that we could safely give him his IV medicines at home. Because of the infection, AJ stopped sitting and was barely moving. We started OT and PT at the Lurie's outpatient center in New Lenox and he is now doing 100% better, and has started to crawl and stand up. As of today, he is 9 months and going on seizure free! He is also meeting all of his developmental milestones and growing like a weed. We couldn't be any more happy.
We honestly cannot find enough words to express all of our gratitude towards all of the wonderful doctors and nurses who have been there by our sides through these rough couple of months. They were constantly checking in on us and making sure we were as comfortable as could be. AJ was able to play with the therapy dogs and received so many toys and a blanket, all from donations like yours! We hope that you all find it in your hearts to donate so that we can keep helping make all other children who have to be admitted feel welcome and safe!
Make a difference in the lives of the more than 173,000 patients treated at Ann & Robert H. Lurie Children’s Hospital of Chicago each year. Support my efforts for the 2017 Lurie Children's Marathon Team by making a gift today. Every dollar raised means a brighter and healthier future for our children.
Here are just a few ways your donations could help:
$35 can provide a comfort item for a premature infant to ensure the smallest and most fragile babies heal and grow faster.
$60 can help provide inpatient entertainment and distractions to help patients reduce stress and have fun while undergoing treatment.
$120 can help provide small lab supplies for one of the hospital’s clinical trials to ensure our children have access to the latest treatments and therapies.
$240 can help provide supplies for the Lurie Children’s classroom so that children in the hospital can continue their education.
All donations are tax-deductible and will be acknowledged by Lurie Children’s Foundation.
On behalf of the patients and families of Lurie Children’s, thank you for your support!
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