Tuesday, July 27, 2010

Progress

She pet the dog! Gracie actually is now petting Hope. She doesn't want to pet her head but she likes to pet her back. It happened because my wonderful nieces and nephews were petting Hope and she decided to try. That's one of the coolest things about my daughter. She really tries to deal with her fears head-on. Sometimes it will take a lot of time, but she keeps trying to push through it. She's dealt with pulse oxs, blood pressure cuffs successfully. Now she's working through her dog fears and the waterfalls in the kiddie pool. I am so proud of her.

She has been going to the pool with me a couple of days a week. She says that it's more fun with her cousins. So, I try to bring them along. We also signed up for a Mommy & Me movement class. We bought her pink leotard, tights and ballet slippers. She loves putting it on. Maybe I should get a matching outfit!

We are going to see Story Book Live in a few weeks. I hope she enjoys it. I know I will since I watch so much Nick Jr. I've learned that you have to embrace it or you're going to be miserable. I am really trying to stay unmiserable so I have decided to embrace them all.

I got the report back on the possibility of finding Grace's birthparents. It basically says that the only way to find information is to find her finder (I have his name) and/or have someone check the records of the hospital and health center. I feel it is in my daughter's best medical interest if we do have at least an idea of who her birth parents could be. I need to figure out where to go from here and soon before the trail gets cold.

I go back to work in two weeks. YUCK! But, I am going to have a better attitude and enjoy the school year this year. I think I am finally getting better footing. Of course life with Grace comes with lots of surprises. I pray they are good ones.

Friday, July 16, 2010

Panic Mode

I HATE panic mode. I hate it because I lose all control of myself. Yesterday morning, I hit panic mode. The night before, we came home from the pool to a hot house. I thought to myself, this is strange...it was working earlier. I hear the air conditioner on...so I go outside (mind you, both Grace and I are in our wet swimming suits with our coverups on) and check the outside unit...the fan isn't going. Great! I check the breaker box in the garage...the masterbedroom was off, so I turn it back on...I go outside...still nada...call Airtron...yadda, yadda, yadda...they have me check the outside breaker and reset it. I do it and I tell them in the conversation that I do need a person to come out and check because I have a child with a heart defect and the heat is not good for her...his last words...I'm gonna send out a technician tonight unless you call to say that it came back on...this is about 8 p.m. I hear nothing for over an hour. Poor Gracie is exhausted and falls asleep in the rapidly heating up room...I call Airtron again at 10 p.m. for an ETA...they say, "We have you scheduled for tomorrow between 6PM and 10 PM...ARE YOU SERIOUS? So, I explain to her about my child and I'm thinking about my kid and they tell me that they have no technicians...finally she says they can get someone at my house but not until after midnight...REALLY? They can come in the morning...so my fried brain thinks I can go to my mom's house for the night and spare my girl from the heat...forgot that she is FAST asleep and waking her would NOT be a GOOD thing...so I tell them okay but I want to be the FIRST one...yes they assure me. So, I open all of the windows. All ceiling fans are on high. We make it through the hot night. I gave Grace ice water several times during the night to cool her down. I get her to school so she can have AC at 7:30ish and I come home. I call Airtron again to make sure I'm first...YEP, he will call me when he's on his way but he's loading up his truck. Okay...thinking maybe 30 to 45 minutes. I get a call about 9:30ish...still no Airtron but the daycare saying Gracie threw up 3 times...I burst into tears...CRAP...It's my fault that I didn't wake her up or make Airtron come after midnight...the fools still haven't called...I'm a bit overwhelmed. My sister calls I can't say one word because I keep balling...so I call Airtron and ask them and tell them, my kid is sick...probably because she slept in a hot room and ya'll were supposed to come last night and didn't and you should have been here at 8 am fixing the problem...(OH did I mention I had paid over $1700 for a 10 year maintanance plan?) so they wanna know how long it's going to take me to pick up my sick child when they could have already been at my house and done (because when they did come it was a fuse and it took about 30 minutes!)...so I pick up my girl and they come like 5 minutes after we get home.

It was such a frustrating day that later on Grace had a major meltdown because she couldn't watch Yo Gabba Gabba. It was one of those days. I probably needed that cry and I probably should have finished it...it has been one heck of a roller coaster ride summer emotionally and I don't know if I really have emotionally have come to terms with everything that has happened. It's days like these that I question my sanity it becoming a single mom. But it's days like today when everything goes well that assures you that you are doing okay as a single parent. Nothing beats one of those days or the hug or kiss from your child.

I only have 2 more weeks of vacation left. I promised myself that I was going to take care of myself and be a better librarian this year. I also am considering working on my doctorate...it won't come to pass until next year...the program is in its planning stages. Don't know what advancement it would bring me but I think the whole idea of lifelong learning is exciting.

Tuesday, July 13, 2010

Single Momhood - Me Days

I send Gracie to school two days a week during the summer. Part of it is for her to have the regular scheduled thing and keep in the groove of school so it's not such a hard transition when I go back to work in August. The other reason is so I can have some "Me" time. I am learning, and it has taken me some time, that this time is incredibly important when you're a solo parent. I do all the things I can't do when Grace is around. I also do things for myself like go to the movies, get a pedicure, go to the outlets, that sort of thing...fun stuff. I also will sleep a little extra. I get a little extra hour and a half on Wednesdays because she goes to a ECI program and works with the Early Childhood Interventionist. It's a gift of time to myself which I cherish. During the school year, my "Me" time is when Gracie goes to sleep. I don't get a lot of time but it's enough. I highly recommend single moms making sure they get some time to themselves. We have to do everything and we are on 24/7 without someone to spell you. My daughter is incredibly high maintainance....not just because of her health issues but she wants my attention ALL of the time. She is now starting to play a little on her own but she still prefers me to be right there. We are working on that. I am thankful when I can get a little break. I always come back refreshed and excited to see my girl. When I'm away from her I do miss her but I know I need a little breather to get back into the game of single motherhood.

Saturday, July 10, 2010

King size bed and more medical drama sort of

I decided to upgrade my bed from a queen to a king because my daughter is a bed hog. When we went to Houston we slept in a kingsize bed and for once I was able to sleep without being kicked or hit or rolled on. So, I found a beautiful bed and a super comfy mattress set from Rooms to Go. Of course the day it's delivered it was raining and the a/c guy and the Salvation Army truck all come at the same time. The delivery guys had a heck of a time trying to get the mattress upstairs. I put my old bed, Grace's changing table and the ergo carrier on Craig's list and I sold them the next two days. That was exciting.

I got Grace's passport, or should I say applied for her passport on Friday. I was worried about the waittime so I traveled to New Braunfels which is a lot smaller and to their district clerk's office because I figured most people were going to post offices. I lucked out. I walked in and was helped immediately. Grace behaved beautifully. She is going through her terrible 2 stage which everything is hers and she's not big on sharing or doing anything that isn't her idea. She's pretty stubborn and I'm thinking that it's gonna be "lovely" when she gets into her tweens and teens.

Friday I also got the news that her bloodwork came in and there were some deficiencies in her immune system. I really didn't understand the spectrum or tests but our pediatrician is concerned enough to send us to a hemotologist. So, we're going to add another doctor to our stable of doctors. So now we have a pediatrician, cardiologist, cardiothoracic surgeon, ENT, pulmonologist, genecticist, speech therapist, occupational therapist, physical therapist, ophthomologist, and now a hemotologist. Holy cow.

Friday, July 02, 2010

I should be in bed but I'm not quite sleepy enough. The rain bands from Hurricane Alex are hitting again and I'm distracted by the rain hitting the roof. The past couple of weeks have flown by and lots has happened. Grace won't be having surgery this summer. The only reason they are considering the early Fall is to beat flu season. But, the cardiologist said that if she continues to do well on this medicine, then we can wait until next summer. That is what I am hoping and praying for. So, I've been trying to downshift from that stress and focus back on the things I need to get done at home. I bought a kingsize bed since my lovely daughter sleeps with me and is a total bedhog. She was kicking and I wasn't getting any sleep. The new bed comes Thursday, and it can't come fast enough. Last night I got hit at least 3 or 4 times, twice in the head.

Grace and I went to Houston to be on a waiting family panel. I was the only family who had some negative things to say...I wouldn't say I said don't do it but I said to expect the worse and be prepared and that it wasn't easy. I really dislike when parents who have a child with a CHD minimalize that special need as something minor. I'm super glad that your child only has to go to the cardiologist once a year and the hole will close up. That's awesome but that isn't alway the case. Then parents who check that off get a child who is only supposed to have a small hole actually find out it's larger and there has to be surgery and then they feel that this wasn't what they signed up for. I just want all parents who consider CHD to remember that it's major and that there might be the possibility of surgery. Do the research and even then it might not turn out the way you expect. Grace's fix should have been simpler and one time...didn't happen that way because of the anatomy of her heart. I'm also not saying it's a bad thing either. I just want people to be educated about whatever special need they are considering and be honest about what they really could handle. Gracie is the best thing that ever happened to me. She was meant to be my daughter. I just don't think I realized EVERYTHING that was necessary such as all the doctor visits and how minor things are kinda major for us. She is getting better. The lisenipril is helping her majorly. She's feeling better and her naughty nature is coming out. She is in the terrible 2s! She does what you don't want her to do and smile and laughs. She broke a vase at the furniture store and had a grin on her face when she did it. Thank God I had already bought my furniture. Everything is "hers" and every answer is No. She doesn't like to share and it has to be her way. She was ticked at me last night for not having Sprite in the house. But she is also showing her funny side. She laughs more and makes silly faces and jokes. She likes to sing and dance around. She's an amateur beatboxer thanks to Biz and she told me she wants to play drums. Her language is getting better (we're still behind). I see some of my mannerisms showing up in her body language. And her newest word is the Southern greeting of "Hey!" She drives me crazy but I wouldn't want her to be any different. She's my Gracie.