Sunday, May 3, 2015

An Update and a Thank You

     Well, it has been around three years since I last posted on my blog. I do apologize to my fans for that. Everyone who knows me knows that I love designing, however it is something that I very rarely get the opportunity to do anymore. Three and a half years ago i gave birth to a miracle baby. The pregnancy was rough and extremely high risk. We thought after he was born everything would be okay and I would be able to get back to designing and college. Oh boy were we ever wrong lol. My new little bundle of joy had other ideas.

     To not drag things out and make people feel sorry for me, i seriously hate pitty, I am not going to go into full details about what went on just little specifics. Chance, my baby boy, never slept. Seriously NEVER! He has stayed up for five days straight before. He was always sick with ear aches, bronchitis, pneumonia. He would get a cold and 24 hours later it was pneumonia. He started talking and then he stopped and reverted to just screaming and squealing in different high pitch tones. After years of fighting with doctors and the ER we finally got answers. My sons not normal, DUH! That is an actual ER diagnosis from two years ago. 

     Turns up my son is allergic to antibiotics, not just penicillin, no lets add on Azythromaycin, oh and Omnicef too! The only antibiotic he can take is not strong enough to fight his infections when he is sick and the majority of doctors will not prescribe it to a little one. Childrens hospital put him on Levaquin, a drug that is only supposed to be used on adults and is dangerous in children. ER doctors were constantly refusing to give my son medication he needed. It got so bad that we became frequent flyers. They didnt take our insurance info any more. Instead they went on and called his PCP. 

     Well doctors finally decide Chance has asthma. Use this inhaler. Guess who is allergic to the inhaler? Yep! So now we see another specialist. This time it is a Pulminology Nurse Practitioner working at Centers 4 Children in Lowell. When my son seen her he had some sort of infection all over the capillaries in his lungs and they would not expand, meaning he couldnt breathe. She finally puts him on a medication regimen and he starts to do better. At this point in time my son is 3. He is 39 inches tall and 31.7 lbs. the doctors were worried. They did immunology testing along with DNA testing. They could not explain what was going on. They did find something in the DNA. My son is rare. He is a carrier for a genetic lung disease that is similar to cystic fibrosis but so much worse. This should not effect his health though. So they referred us to talk with the geneticist who did more DNA testing. 

     After almost three and half years of fighting with doctors we got an official diagnosis. My son has Chromosome 4q Deletion Syndrome. All of his signs and symptoms from the past three years fit with the diagnosis. Then comes the horrible realization that there is nothing I can do. Studies on 4q are not done by many. In fact there are only two doctors listed to have done research on them, one is in the US the other is in the UK (i think). While my son has this his specific area has not been researched much. However, children with 4q are known to have immunity issues, allergy issues, breathing issues, learning issues, lack of a sucking reflex when born, sensory processing disorder, mixed expressive-receptive disorder, anxiety issues, high pain thresholds/not being able to communicate pain, the list goes on and on and all of which my son has. There are some people who find out right away. Others, like us, do not and we have to fight with doctors to get the help we need for our children. It is a constant fight to keep our kids healthy. I never thought i would be "one of those" moms. I cant let him play outside much or he will get sick and he has to be in constant filtered air. If a kid has a runny nose or a cough it means an ER visit for us. He is on a strict medication regimen, miss a dose one day because of a busy schedule he gets sick. Then there is food as he is allergic to food too. Our life is fun to say the least and we are always busy with therapies, doctors, and now we have added Pre-K into the mix. He went two days and he is sick, again. 

     On the day that he got sick i noticed a fan bought some of my kits. This totally shocked me as i thought all stores had kicked me out by this point but apparently someone still loves me :). It brought a tear to my eye and much needed smile to my very overwhelming day. I do hope one day to be able to get back to designing but i have no idea what our futures hold right now. I am on facebook though. While i do not always reply i do see things people post and send me and i do appreciate it. 

As in all things i wish every one of you my best and happy scrapping! 

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