As Josie would say…I love my family.
I guess I should say allergies SUCK! And so does asthma!
So I know I haven’t said much about what has happened to our sweet Josie on this blog (in the past). I have promised an update or story but never really did it. It was too hard for me to travel back down that road and re-live the events that occurred. It was emotional and terrifying. But most recently (a few days ago), we had her retested and this was my update:
At 9 months old she had an allergic reaction to diary and eggs. And days away from her 2nd birthday, she had an anaphylactic reaction to dates and cashews (tree nuts). I almost lost her that day (I’ll always and forever be grateful for the love and friendship of Shantel Brock-you are an Angel). While her lifeless body lay in the hospital bed and her lips blue and her lungs trying to pull in all the air they could, I lost myself that day. Since that moment, I’ve never been the same. I’m scared at every given moment. No one TRULY understands. It’s painful. Not only does she suffer, but I do too. I always try to get out with other moms to get Josie to play with others but most people don’t know that I suffer in silence. I worry. My anxiety has turned into panic attacks. I make myself sick. I worry about too many kids with too many food items and not being able to watch her every move. It’s literally drove me insane. To the point where now I am seeking help to be the best mother to her. Because that’s all I want. I want to be normal, too. I try to stay strong for her. It’s hard. And no one can tell me anything that will make me feel better. Only a parent of a child with allergies can explain or relate to the never-ending fear that lives inside. The nightmares. The “what ifs” that seems totally ridiculous (to most people). Well, my little girl got blood tested after her near death experience and PICU at children’s hospital (over a year ago). And the results were shocking. Almost unbelievable. And here we are, more than a year later with high hopes that maybe, just maybe something has gotten better. Maybe something she was able to out grow. I finally found her a fantastic allergist. Who sat with me today for 4 hours ya’ll! 4 HOURS!!!! Why? Well, here’s the story: I made the appointment because my sweet girl starts school in August (Pre-K). And also because I’m tired of harboring her from play dates. I make up excuses but never want to blame it on her allergies. Really, it’s my worry (is what I keep telling myself). I just want her to get out more! The allergist and I sat there and talked about blood vs. skin testing. Skin testing is much more able to tell you the truth rather then false positives. Her blood work could have very well had some false positives. The doctor and I were positive and sure that that was the case. She asked me if I wanted the “tree nuts mix” or each separate nut tested on her skin. I asked for each separate. We tested, dairy, egg, tree nuts (all), peanut and chicken via skin test. Prior to this we were both so excited that she may be able to try COOKED dairy and egg (it changes the protein), and she may eventually out grow this. Skin test usually take about 20 minutes to react. Josie’s took 20 SECONDS! Yup…you read that right! 20 seconds! My poor girl came back positive then ever to all the allergens that she once tested positive to. Only this time it was actually worse. The doctor lost hope at that point. Her face said a thousand words. Her voice changed. She seemed truly concerned. I asked if we had to go to the ER? Was it THAT bad? She said it was pretty bad but we would keep an eye on her, give her benadryl and all that we spoke of earlier was out the window. No cooked dairy or egg. No trials. No reintroducing foods. She even mentioned that the likihood of her outgrowing this is not likely and won’t be tested again until she’s 5 years old. My heart sank. I can’t help but feel immense guilt. What did I do to her? Why? What happened? I made her, why can’t I fix her? I tried to keep my composure so Josie wouldn’t read my emotions and get even more scared. The doctor knew it was happening…I lost it. If I could do ONE thing in this world it would be to take THIS away from her and give it to myself. I’d do anything to make this go away. So the entire point of this post? Well, because some people don’t take Josie’s allergies seriously. THIS FOOD IS POSION FOR HER! It’s immediate and it’s DEADLY! IT IS POSION! IT CAN AND WILL KILL HER! And I hate when people say “oh just a little tiny bit won’t hurt.” Or they let their kid sip on my kids cup (well, your kid just ate a cookie that contains eggs/dairy, whatever else). People don’t realize the seriousness of contamination. Did you know that when I almost lost her more then a year ago, she ate a teeny, tiny bite of a Lara Bar (dates and cashews)? Tenny tiny! That’s all it took. Seconds went by and BAM…ambulance, ER, PICU and almost intubation. FAMILY, FRIENDS: PLEASE, PLEASE, PLEASE take this serious. I can’t bear the thought of anything happening to my baby as long as I’m living on this Earth. I NEED you to understand the seriousness! I NEED you to respect my wishes. Understand why I clean like I have OCD! Because there ARE allergens in our home. THIS is why I have a hard time getting out. THIS is why I have a hard time meeting other moms and getting my child to play with others. She’s a great kid! She’s super sweet and smart and LOVES to play with other kids. I just don’t want to be the mom that looks like I’m crazy, or hovering or nuts. The PTSD from almost losing her was and has been hard on me. The nightmares still happen. It could be why my panic attacks are at night, randomly. I wake up crying some nights re-living that event. The images just don’t go away. So although I’d LOVE to meet up and have my kid play with a ton of other kids. I just can’t because of me. I’m grateful to the friends and family who understand. Who truly know that one teeny tiny bite can kill her. Who respect my “craziness” and know I’m not insane. I love my daughter. And without her, there’s no me. Everything I do and don’t do is for her (them). Below are the pictures from today. They are heartbreaking. They are scary. They are what they are. My girl is happy and healthy. What she eats, is all she knows. She doesn’t eat junk. She’s doesn’t live off fast food, she just eats to live…she doesn’t live to eat. We live in a society where eating is all part of socializing. So with me having celiac disease and Josie’s food allergies, we don’t get out much. And it’s sorta depressing at times. It’s a lot of work to leave the house to go somewhere. I always worry about what she will eat…what I will eat…it really IS exhausting. So this is the truth ya’ll. THIS is why I am who I am. Josie NEEDS a mom like me who is hypervigiliant. I am her mother and her advocate. Please understand…my daughters life is priceless to me.
***The top left is PEANUT. The bottom left is CASHEW (what she had a reaction to in the Lara Bar a year ago). To the right is Chicken, Egg and Milk (top to bottom).
After thinking about this for the past several days/nights, I’ve determined that I’m not stopping here. We are going to see another allergist next Thursday. I want more done. More testing. Most opinions. I can’t stop and won’t stop at “well, we will re-test her again when she is 5-years-old.” At first that was okay. But the more I think about it…no! I am not done! What can we do?! There has to be more! I want blood work done. I want it all. I want her asthma reassessed. People seem scared to touch her. Tell me what to do-I’ll do it!
Finding the time to sit down and blog lately has been tough. This little beauty keeps us busy. Between the constant housework, running around, grocery shopping, laundry and spending every minute in between with Josie, the day is over before I know it. Yet another month has come and gone and my baby girl is 5 months old!
It’s so hard to imagine. She is growing and changing so fast.
I cry just a little bit every night as I lay her in her crib. I mourn the newborn days; yet look forward to her developing witty little brain. I miss being pregnant.
We certainly have been blessed with the most amazing little girl. She is so patient, so calm. She rarely cries. Talks a lot! And I mean a lot! If only I could understand what it is that she is saying. I do hear her say “momma” certain times. Or at least I’d like to think that is what she is saying.
She’s discovered her feet. As in “I think I will just chew on this”. She is very good at entertaining herself. I’m pretty sure that this is expected at this age. And when she can’t reach her foot into her mouth, she gets a little mad and grunts. It’s pretty entertaining.
She lies awake in her crib in the mornings now. I hear her talking to herself, moving around from back to tummy, to tummy to back, looking around at her surroundings. She would lie there for hours if we didn’t go rescue her. She is so good at just entertaining herself and talking herself back to sleep. But we often have to go get her and make sure that she eats because if it were up to her, she’d skip that feeding (or many feedings). Like I mentioned before, she rarely cries.
She started laughing and giggling. It’s still sort of hard to get her laughing but Daddy’s pretty good at it. I love the way he talks to her. She absolutely adores him. I love to watch them lay together on the couch at nighttime. She lay so peaceful and content taking in shape and contours of his face. She admires him, as do I. My heart melts just a little bit more watching them bond. She is Daddy’s girl and I always knew it. He’s so protective, so loving. I couldn’t possibly ask for a better Daddy for her. He is perfect. She is perfect. Our little family is perfect. Our life is perfect.
She now knows her name. When I say “Josie”, she turns her head and gives me that big gummy smile that just makes every thing riding on my shoulders and mind just disappear. She is the light of my life. The best part of my day. The most amazing little girl.
I can’t wait for everyone at home to finally meet her. You will, without a doubt, adore her as well. She is such a sweetheart.
She really enjoys laying on the floor with her play gym. She will talk and talk and talk and talk until she wears herself out. When it gets quiet I know that she has probably fallen asleep down there.
We bought a foam floor mat that connects like a puzzle. It was a good find off of Amazon and made with safe materials (which is hard to find). It’s perfect since we have hardwood floors.
When she hears either Daddy or I on speakerphone she will stop what she is doing, look very carefully at the phone and smile really big. She recognizes our voices. I love that!
She still isn’t tall enough for her activity jumper, although when I put her in it for the brief time that I have, she loved it. Especially the sun.
We finally got her a high chair. We went with the recommendations of my sister-in-law, Jennifer and got the Chicco Polychair. She is still too short for it because the tray is really high. Josie’s grandpa (my Dad) bought it for her.
We recently started going outside for walks in her stroller. She absolutely loves it. She is just so quiet and takes in all of her surroundings. It’s hard to get out and do it for very long because of the heat here. And recently we had a lot of rain so the mosquitos are getting worse and starting to hatch. I did buy a screen for her stroller though and used it once.
She enjoys going out and running errands. She rarely cries and enjoys looking at everything around her. I love watching her look with curiosity. Sometimes I catch her looking at me and staring then when we make eye contact she gives me a smile and cringes up with excitement. It is so cute!
Unfortunately, she is losing her hair. She is going bald on the areas of her head where she lays. Sadly, I am losing my hair too. Which led me to get it completely chopped off last weekend. It’s above my shoulders. Shortest it’s been in years. But I like it. It’s easy. It is still falling out but not in chunks like before. I guess this is part of being a mom now. My days of giving a crap are long over.
She is still fitting into size 3 month clothing. And is still in size 1 diapers. But just about ready to move up in both very, very soon.
Her nails grow like weeds. And she is constantly scratching her little elbows, knees and neck. Poor thing still has irritating eczema and random flare-ups.
I can’t say it enough but I love our four days straight together. It is never, ever long enough. And going back to work on Friday is harder and harder each week. I never want to leave her.
Obviously, she is very photogenic. She always knows when the camera is on her. And luckily gives us that big beautiful smile. She is so beautiful.
We don’t go anywhere without Sofie the Giraffe. I never understood the hype about this giraffe while I was pregnant. And I still don’t understand why it seems to be her favorite. But it was totally worth the $23+ dollars it was to get one because it sure soothes a bored baby.
She is getting better about sitting up on her own without help. She can sit on her own tripod style with lots of grunting. She can’t do it too long because it hurts her little tummy but it’s cute to see her tackle it on her own. Soon enough she will be sitting up with no assistance at all. Stop growing my baby!
We’ve tried everything for her eczema: Curél, Eucerin, Mustela, Vanicream, Metaderm, Cetaphil, Babyganics, Aquaphour, California Baby and Aveeno. Nothing really seems to make it better. Not even hydrocortisone. So I try not to use that because it will come right back regardless.
She still curls her toes all of the time (as you can see in most pictures).
I love how she rubs her little feet on my side when I hold her over my shoulder.
I bought another Baby Bjorn Original carrier that is smaller and easier for me to use. She loves it.
She even loves the one that her Daddy will carry her around in while he has her on the weekends. His is bigger and can eventually be used on his back to carry her.
I wish I had more time to update on the blog. I think about it all the time and often say “I wish I could post this”. I recently made a Facebook again. It’s not something I really am happy about but it is a lot easier (with certain things) to keep friends and family updated and in the loop. As well as being able to keep tabs on my family and friends.
Here are a few (just a few-haha) of my favorites:
I hope to update more often but it is very hard. So happy 5 months to our beautiful little princess! We love you Patoots! To the Moon and Back!