Tuesday, December 11, 2007
What’s Next? Current mood: stressed
Well, today marks 2 weeks that we have been home. I am so happy to be at home with my cutie patootie, but I am still adjusting. I don't know if I will ever go back to the way I was 6 months ago!
Things have been VERY busy for all of us since returning to the best state in the world!! The first night that I was home, I of course went to my favorite Mexican restaurant first, I was greeted with a horrible horrible odor in my house. It smelled like a garbage can. The guilty culprit was our freezer that we keep in the garage. Apparently while we were away, the power went out. Well, the power to the garage and the back of the house never came back on. All contents in freezer (hot dogs, pizza, jalapeno poppers, chicken breasts, burritos, hamburger meat etc.) ruined. Not only did they ruin, it must have been so hot outside that the bags burst. All contents leaked out in to my freezer and in to the garage. Steve noticed this a couple of weeks before I came home and cleaned the freezer and disposed of the food. However, men are men and they have their own ways of cleaning stuff. Needless to say, I was up until 1am that first night scrubbing the freezer, taking the freezer apart to get to the drip pan (Steve helped with that one...haha) and pouring all kinds of different cleaners in to the drain. Let me just say this. We are STILL attempting to get the smell out of the freezer. It isn't even paid for yet and I will be danged if it is ruined. We are now trying lemons and lemon juice. The smell is A LOT better, but I have a super sensitive nose and can still smell it a little, therefore, no food is going in the freezer yet.
The few days after returning home were spent going to Costco & Sam's and Wal-Mart. We basically had no groceries in the house, since we haven't really lived here in 6 months. What fun that was.......me, my mom, and Macy Jane (who was throwing up all day that day) shopping for hours and hours.
My 2 aunts & my mom came over Friday night and stayed until Sunday. We kind of have a tradition where they spend the weekend with me and we decorate my house for Christmas. We had lots of fun and it was REALLY nice having extra hands to help with Macy Jane while I tried desperately to clean my house. I do not understand how it can get so dirty.....especially with noone but the rabbit living in it for so long.
However, 2 days after we got home, I had a meltdown in Sam's. Macy was throwing up alot since Tuesday and was acting very lethargic. I did the new mom freak out thing and called the pediatrician crying. They told me to give her pedialyte and come to the office in the am. I went home and gave MJ the fluids and within an hour she perked up and was playing on her rainforest gym like old times. The doctor didn't really change anything, just said to add rice cereal to her formula to thicken it somewhat. We have already tried it in CA, but he told us to make it a little thicker than what they did. I haven't noticed a huge difference......but am willing to try anything.
The problem with MJ is SEVERE reflux. She is on multiple meds for it and has even had surgery for it, but we just haven't found anything to help it long term. Everyone says as she gets older and bigger and more upright etc. she will outgrow it. Well, in the mean time she is having an extremely hard time gaining weight because she throws up the majority of her feeds. That is the reason that I am stressed out and worried. I know that if she isn't gaining weight, her pediatrician will once again put her in the hospital and label her "failure to thrive". I do not think I can handle that again, especially this close to Christmas. There isnt anything else to do really for it except put her on IV nutrition, which is really really bad for her liver and not something I want done. We will see though, hopefully she has at least gained some weight over the past 2 weeks, enough to satisfy the pediatrician. I can't tell because I am with her every day. I need to find some baby scales and buy them.
If ya'll think of it, please pray that she will have gained weight. Also pray that she will start throwing up less and less. I am going to try to get her in a early intervention program that is free to children with certain conditions/illness'. She is behind in many areas due to being confined to a hospital, but at the same time she is catching up in some areas very fast. She reaches for her toys, plays with her hands, puts everything in her mouth, plays with her feet (although they haven't made it to her mouth yet!!) and is starting to put her arms up when I go to pick her up. As far as rolling over....she is almost there...she just hasn't figured out that she has to move her arm out of the way. She HATES tummy time and part of the reason may be because of her mickey button (g-tube). She has great head control and I can almost carry her on my hip without supporting her. She still has a long way to go before she will sit on her own, but we work with her every single day to strengthen her muscles.
One area that bothers me some is her speech. She will coo and make noises when she is in her crib or laying in the play pen, or even on her rainforest gym mat. (mainly when she is alone) However, when I talk to her she doesn't make sounds, she only grins at me like I am the funniest person ever. She will laugh some when I tickle her. I guess maybe I am expecting too much too soon? Trust me....I am baby talking like crazy to her and giving her time to respond to me etc. Any other tips from people out there? It is frustrating to me because I do not know if this is a result of her DiGeorge Syndrome (which so far she only has the heart defect as a side effect of the syndrome, thank the Lord!!) or just a delay from everything she has been through. One of MJ's roomates in CA was a boy that was 18months old with Digeorge and he did not talk. All he did was cry. He understood what people said to him and him and his mom communicated nonverbally very well.....it just kind of shocked me I guess.
I pray that isn't the case with MJ. I read on the internet as much as I can and probably way too much about how 6month olds should be babbling etc.....MJ isn't close to doing that, but I guess at least she is making some noises!!! She is very alert and turns her head in the direction of the noise, tracks well, etc. Who knows....maybe the early intervention people can give me some insight etc.
Well, in other news. Hmm....Steve's new job is going okay. One positive thing about it is that it is closer to home! Thank the Lord MJ has private insurance again. Hopefully this policy will last longer than 6 months because despite what people have told us, she DOES NOT qualify for any type of government funded program as far as insurance goes. Even with Steve being the only one working, we still make too much money. It sucks because if you are middle class worker you are screwed. You either have to be considered in poverty or so wealthy that you don't have to worry about it. That's the great United States of America way though.
I am really excited about Christmas! I am only buying MJ a few things that she will need in the next year and things that will help developmentally. She doesn't need a bunch of toys or clothes....my family and friends have taken care of that (for which we are SO thankful). I am buying her a newborn Cabbage Patch Kid though.....that's the only toy. Steve and I are not going to give each other presents this year. I have the 2 best presents possible asleep in the next room and honestly that is all I need. I have plenty of clothes, shoes, purses, jewelry, makeup and fun stuff. I think I can survive one Christmas withouth spending $2,000 on presents. Those days are over and were fun while they lasted, but now I am in the real world of a budget
Well, this blog is so super long. I was supposed to be in bed at 10:30 like everyone else. However, I saw that late night is the only time I really have to myself and owed you guys an update.
Specific prayer requests: MJ to gain weight and throw up less, MJs development to continue to progress, strength for Steve as he is working extra, and strength and patience for me as I function on little sleep and have a lot of things on my mind these days.
Thanks for all of the prayers and I promise that I will try to upload some pictures on here soon and blog more often. PLEASE remember to pray that MJs doc NOT admit her to the hospital on Friday.
Thanks and much love,
Bethany