As some of my friends and family knows Lyndsee has had one more ride since she has been born. First off she was born blue since the cord was wrapped around her neck twice, they called in several people to be prepared for her and they worked on her and after what seemed like forever I finally got to hold my baby girl. All was well with life since I had my two beautiful daughters with me at home until…..
Around two months of age, we had to rush Lyndsee to the ER. She couldn't catch her breath and it was just awful having to to see her like this. She was diagnosed with RSV and stayed 7 days in the hospital in an oxygen tent. One of the scariest times of my life and you better believe this mom was right there in the tent with her ;).
Well ever since then she has had asthma problems and had to be on the breathing machine much of her life. I felt like she could never catch a break until fast forward we made our big move to Florida. I am proud to say she has not had one asthma attack since our move 2.5 months ago. Praise the LORD! Instead she has started having these severe stomach cramps, that is awful to watch. She clinches up into a ball and holds onto whatever she can find the fastest and shakes. It really scares us seeing her like this and I make sure I am right there with her ever step of the way to get her through the pain. It really brings Scott and I to tears seeing her like this. I took her into the doctor last week and she immediately said we needed to get a good allergist and asthma dr here in Florida to take over with Lyndsee's care.
We had our visit today and I really learned a lot of information. She was telling me as far as Lyndsee's asthma goes, she was in what they call the honeymoon period. It is where asthma patients move to a new environment and their immune system has to get use to the surroundings. It usually takes about three months until their system gets caught up which means honeymoon period where everything is all good and well ;). She said October season here starts the bad allergy/asthma season so we want to be prepared. She also put a light up Lyndsee's nose and seen it was really inflamed. She listened to her lungs and she has said right now Lyndsee is considered mild asthma but not to count our blessings too early. We are starting her back on the pulmnicort twice a day and the nasal spray to relieve the inflammation. The pulmnicort suppose to help prevent the onset of asthma attacks since we are coming up on our end of the honeymoon period and also busy allergy/asthma season. I am thankful Lyndsee takes the breathing machine like a pro, but I guess since it has been a part of her life since she was 2 months old she is just use to it :(.
Now the part came in where we talked about her awful stomach cramps. She really thinks that Lyndsee is experiencing reactions to food allergies. Lyndsee did have food allergies as an infant, but when I weaned her at 18 months I started reintroducing foods back into her system. I guess that was the wrong thing to do, but I honestly didn't know. So for four weeks she cannot have dairy, peanuts, shellfish, or citrus foods. Oh boy! My child loves milk and she loves peanut butter so I am going to try and find alternatives for her. After the four weeks we are going back in for a skin test. She is going to test her for environmental and food allergies so we can figure out what is making these severe stomach cramps. I am to keep a food log too for when she has the cramps, I need to write down what she just had to eat. Her pediatrician told me to stop diary and peanuts last week so we are on day four right now without these things and today I am proud to say she has only had two episodes of the severe cramps, versus yesterday where she was still experiencing about 2 and 3 epidsodes a hour so I'm hoping the dairy and peanuts are getting out of her system. I so hope this is all it is and it can be fixed even though Jen is going to have to get creative with food since Lyndsee is so darn picky with what she eats. This is a child that would not eat any foods at all until I weaned her at 18 months. She refused all baby foods, anything, it was all mommy milk.
They have scheduled an Upper GI for this coming up Monday Morning to make sure there is nothing else too causing the stomach cramps. I'm praying there is nothing else involved!
Now the biggie… I blogged about this a few weeks ago. Read here about where I was talking about her cafe au lait marks. Lyndsee has had these since she was born but they are now multiplying and getting larger. It seems that if there are 6 or less there should be no problems. Right now Lyndsee has 9 including a very big one reaching from her shoulder to her elbow. This is a marker for neurofibromatosis. I really need to stay off the internet reading about that, because its always negative news online. We are seeing a specialist this Thursday for this and then seeing a geneticist in November. That is the fastest they could get us in. Sometimes I just sit at the computer and cry when I read stuff about the neurofibromatosis. Lyndsee's pediatrician told me last night, Jen stay off the internet from reading right now. It's only going to scare you more. I just can't stop though. It scares me to think Lyndsee may have this and what it means for her. This is coming from the worry wart Jen! Anyways I am going to try and not read anymore about it online and let the specialists do what they do best, but I do like to go in with some kind of information so I'm not going in blind with no knowledge at all. The pediatrician has really been helpful with all our questions and telling us more information about the neurofibromatosis. She is making sure we see all the right specialists in order to get a correct diagnosis.
Anyways it has helped typing all this out. I know it is long but you can see where my mind has been for the last couple weeks. My girls ARE MY WORLD and I try to be the best mom ever and make sure I am doing all the right steps for them, but sometimes its hard not to question myself if I am actually doing good enough!
If anyone has any information on any of these topics discussed today, I would love to hear feedback!