Bubble Boys

From the day that each of the boys were born, they have all had some type of issue physically. Kaelam had awful colic and horrible reflux. He was on special formula and 2 different medicines until he was a year old. Not long after he turned 1, we noticed that he seemed to have a lazy eye. The pediatrician wasn't bothered by it in the beginning but at age 4 we took him to an eye dr and we were informed that he had Duane's Syndrome. It basically means that the muscles of his eye are too tight and cannot move properly. We were told to patch the eye for a few hours each day in order to try and help some of the sight to improve. After about 18 months, they decided that the eye sight had improved as much as it was going to and decided to operate. The day before Thanksgiving, Kaelam went in for a 20 minute surgery where the dr. cut the muscle of the eye and stitched it into place. Although we were told that the eye would never have total function and would need to be repeated every 10 years, it was considered successful. Kaelam has also had lifelong eczema and needs steroid cream to help with the flareups. Then came Tiny. I was diagnosed with Group Beta Strep during my pregnancy with Tiny. Like any freaked out mom, I read everything I could on GBS. I went into labor with Tiny at 39 weeks and he decided he didn't want to wait for me to get the meds needed during labor to ensure that he didn't get sick from the GBS. I remember the nurse squeezing the bag of IV meds as Tiny was born. The dr. was hopeful that enough of the meds had gotten into my system that Tiny would be ok. They kept us longer and ran extra tests but Tiny passed them all. Tiny also ended up with colic and reflux and was placed on the same meds and formula that Kaelam had been on. At 10 days old, on Father's Day 2009, I rushed Tiny to the hospital. He hadn't been eating or peeing, had a high fever and his soft spot on his head and sunken in BIG TIME. I was terrified. I had no idea what was wrong. They ran test after test but still couldn't find the cause of the symptoms. It was at that time they decided to do a spinal tap... On my 10 day old, brand new, little baby boy. I agreed to the spinal tap and watched, tears streaming down my face, as my baby screamed. It was one of the worst things I've ever watched and that procedure will be burned in my brain for the rest of my life. The spinal tap and the million others tests they performed gave little answers. Tiny and I stayed at the hospital for another week, with him constantly hooked up to meds and monitors. It was awful. We were never given a 100% cause of his issues. They are assuming that it was the GBS. Ever since then, Tiny has had asthma attacks, horrible allergies, croup, bronchitis, pneumonia, awful eczema and probably others that I'm forgetting. On to Ryker. I was induced with Ryker due to a fall I had taken in my yard. Once he was born, they discovered that the placenta had started to detach itself. If they hadn't induced me, he may not have made it. Ryker also had colic and reflux and needed the same meds and formula as the other two. Last but not least is Bubba. Bubba was born and seemed to be 100% healthy, that is until he started the same colicky symptoms and severe reflux showed up. I gave him 6 different types of formula and had his meds changed numerous times. I knew that something was still wrong with him but the pediatrician wasn't listening to me. I finally decided to switch drs and I am so glad that I did. It was wonderful having someone listen to me! He put Bubba on alimentum formula, switched his meds more and sent me to a pediatric GI at Phx kids hospital. After seeing the GI dr. he scheduled Bubba for an endoscopy and a swallow test. The swallow test was used to see how much formula was making it into the stomach and staying in the stomach. The endoscopy was to check his insides and to take samples of the stomach and intestines. That procedure required him to be put under but thankfully only lasted about an hour. After all of those tests, we still had no answers. I was basically told to wait it out and hope that he would outgrow the issues. I had to start baby food really late and I had to be careful of what foods he was given that could potentially upset his stomach. He also had to stay on formula longer... about 18 months total. Thankfully, he DID outgrow the tummy issues! That brings us to a more recent time frame... Poor Tiny has had so many issues with asthmatic symptoms and allergies. We've had to put him on numerous meds, breathing treatments, inhalers, etc. Nothing has gotten better, in fact, it's only gotten worse. I got him into our dr. and after reviewing his charts, he was upgraded to full blown asthmatic, given a steroid inhaler to use 2x a day, everyday and I carry a rescue inhaler for him at all times as well. We decided it was time to start allergy testing on Tiny. The nurse came in and drew some blood to send off. I got a call a few days later with the results. Tiny had a TON of severe allergies. We were told that he was allergic to things like trees, grasses, molds, etc. The weird ones that we had no clue about were his allergies to wheat, soy, yeast, peanuts, corn, tomatoes, potatoes, carrots and APPLES. Yes, apples. Who's kid is allergic to APPLES?!? My weirdo, I guess. They also told me that he's allergic to penicillin. We've given him penicillin based meds since he was born. Now we are thinking that may be why he would stay sick for so long. The meds would clear up the issue but then cause underlying issues to surface. After seeing how many weird and random allergies he had, I decided to have the other boys tested. Today I got Ryker and Bubba's results. I'm still waiting on Kaelam's. Anyway, Bubba is apparently severely allergic to milk while Ryker is severely allergic to wheat and grasses like Tiny. I'm scared to see what Kaelam's are. As soon as I get Kaelam's results, I will be calling an allergy/asthma specialist and making a group appt for all FOUR boys. Lord, help me! There are also some other issues with Tiny and Ryker that will be covered in other posts, as we have some appts with specialists coming up this summer. All I can do at this point is to sit back and laugh. I wish I could put my kids in bubbles and keep them safe... Too bad I can't make that a reality.  :-/