Wednesday, March 19, 2008
I am getting sleepy! Current mood: awake
I am getting really sleepy, but need to stay up for just a little while longer. Since Macy Jane has been sick (almost a week now ), I have been sleeping on our couch beside her so that I can listen to her breathing. Some may think that I am paranoid, but after seeing her turn purple/blue/dusky whatever color you want to call it, I will proudly admit that I am paranoid. I don’t actually end up sleeping that long because once I get good and asleep she decides to cough up half a lung, then start breathing too fast.
This is where my mom comes in. She has been staying with me since last Thursday to help me while Steve is at work. I do not know what I would do without her. She watches MJ in the mornings for me so that I can take a nap. Unfortunately, whatever MJ has she decided to spread it to my mom and possibly me. I have a sore throat, but can live with that. Mom on the other hand sounds like a barking dog when she coughs and now sounds like a man when she talks. Say a little prayer for her if you think of it
I was thinking tonight about MJ’s immune system and the whole DiGeorge diagnosis. I have blogged before about how MJ was diagnosed with DiGeorge and how there are 183 things that children with the syndrome could have. Since day one of finding out, we have all prayed that MJ would not have any symptoms from DG, other than her heart defect. I believe that God has been listening and answering our prayers in our favor. She has a beautiful face, one that looks like any other "normal" child, normal ears, normal mouth, and normal body--minus the heart defect. She is behind developmentally just from being in the hospital for the first 6 months of her life laying on her back, but she has come so far in the 3 and 1/2 months that she has been home. She coos and babbles now, rolls over both ways without any trouble and will be across the room within seconds she is so fast, and she is going through the motions of learning to crawl. She does not sit up unassisted 100% yet, but we are getting there. She still does not eat anything by mouth, but we are trying to get her reflux under control before we attempt that again. She knows how to eat and has not problem with the action of eating, she just does not like the taste of food. She hasn’t had anything since June ’07 on a regular basis and does not realize that eating by mouth is the normal way to do it. She will eventually learn to eat and her not eating by mouth is not a big deal to me.
Anyways, back to DiGeorge. The majority of DG kids have low calcium and very low or non-existent immune systems. Macy Jane’s immune system has always been normal, with one part of her t-cells being slightly low, but not enough to be abnormal and cause harm. She hasn’t had issues with her calcium either. Thank the Lord that she has a good immune system because after seeing how this virus/bronchiolitis has affected her, I couldn’t imagine what it would be like if she had a poor functioning immune system.
She has not thrown up from her reflux in about 5-6 days! We had her meds adjusted last Tuesday to the proper dosage and since then she has done so well! I hope that this trend continues even after she is over her illness. She does however have diarrhea and a raging diaper rash from the antibiotics that she is on. We bought some Resinol cream tonight and her butt looks so much better. I can’t stand changing her diaper because she starts crying when she sees me get a new one out to change her. I highly recommend that cream to anyone!! It is VERY hard to find, in fact noone in Memphis had it....but little bitty Covington did! You have to ask for it at the pharmacy.
Anyways, all of this to say that I am so thankful that the Lord has been beside us every step of the way. I know that there are going to be more bumps in the road and things may not always go as I would want them, but ultimately God knows what He is doing and I have to have faith. I do not always understand and I am not always 100% in my faith, but something always happens to bring me back to where I should be.
In other news! I have settled on a theme for MJs birthday party. She is going to have a pink and purple cupcake themed party!!! There is one website online that has an "exclusive" cupcake theme and it is really cute. When we were in Florida I bought her an outfit that says something about it being her birthday and it has a cupcake on it with a matching bib. However, I found some dresses online and I am going to buy one for her to have her picture made in and to wear at her party. I cannot wait for that day to be here! I am still a kid at heart, so having a daughter is perfect for me because I have as much fun as the kids, if not more because I get to plan all of it. However, I do dread having a house full of company. Since MJ has so many "fans" for lack of a better word and because so many people have gotten attached to her, she will probably have an unbelievably large crowd. She will love it though, she doesn’t meet a stranger!



That is the dress that I am going to buy her and the cupcake is the actual cupcake that will be on the dress with her name on it. I fell in love with it when I saw it!! I may decide to go with a pink dress, but right now I love the purple. While I am posting pictures, I might as well show what her party stuff looks like

Like I said, I have more fun with this than I probably should but who cares right?!
Well, I guess I will try to get off of here and try to get a couple of hours of sleep before the princess awakens. Thanks for taking the time to read my blog
Much love,
Bethany