Monday, May 31, 2010

Long Time Gone

It has been a long time since my last posting, I guess my life is just busy. There has been a lot going on in my life and I am just trying to wrap my small brain around it all before Sy gets here. Oh that is right, FYI I am having a BOY! I am very excited and can't wait to meet my little son and see what he looks like. He is due on July 22nd, but my doctor has to leave town on the 15th of July so he will be here no later than on the 14th. Which Zoe isn't too excited about because her birthday is the 14th. So meanwhile after my mom gets here I will be doing everything in my power to go to the hospital before this date and have him.

As for Rya, she is doing well. We did have a few appointments for her this last couple weeks. Her neurologist said that she was impressed with her motor skills and state that she believes she is around a 7-8 month old in that area. However her cognitive still are still down around a 5-6 month old. Mostly because at that time she was not saying any constants. We were not sure if this difference was a good thing or a bad thing, and to be honest she was not either. She stated that in all her time doing her job she had never seen something like that before. So she wasn't sure if she could say it was a bad thing or a good thing. I personally decided to see it as a good thing as well as her physical therapist is seeing it that way.

Her rehab appointment also came and I was a bit more nervous about this one. Her SMO that she was first given for her foot really didn't/doesn't seem to be doing any good for her foot. She is way too strong and over powers it when she stands, since it is just plastic. So the doctor gave a script for two new braces. One that will go to all the way up her leg to her knee to give it more stability as well as a soft one for when she is asleep. She was also very disappointed in her tightness with her muscles on the left side. So we started her on a new medication called Baclofen to help her muscles relax and make it easier for us to do stretches with her. We also set up an appointment for her to have Botox injections in a few different places. This Botox should last for 3 months and help a lot to make her stretches work better. After three months we then evaluate the results and decide then if she needs another round. After she receives her Botox the doctor wants us to amp up her PT. Which means anywhere from 3-5 days a week of PT. This is a lot for me and I am feeling very overwhelmed. But we have to do what we have to do, I might start out with 3 times a week to just get used to the situation. As well as work Rya up to the 5 days. But Jon wants to jump into the 5 days right away. Just seems like a lot for me as well as Rya and we will have to come to a happy medium somehow.

Well that is all for now.....sorry my posts are always so long!

Sunday, February 28, 2010

Feeling in the Dumps

I am honestly not sure if what I am feeling is the usual pregnancy hormones or honestly true sadness/misery. I have so much "quiet" time at home where I am busy doing physical things, but what it does is allow me to the time to think. THINK!!! Thinking isn't always good to do when your emotions are already down in the dumps. I have all these sad feelings, and I have no outlet for them. I love my family dearly but they are not the best of people to express my emotions.

I don't sleep at all anymore, I am either in the bathroom, listening to my husband snore or waiting for Rya to wake up. So I am exhausted and waking up at 6:30am in the morning or before that. I never get to sleep in anymore and that doesn't help at all.

I am about to embark on a "poor me" session, so you can either chose to stop reading here if you are tired of me complaining or continue to read. Your choice....

I clean my house top to bottom, I spend all day cleaning, I work my ass off. I love a clean house and it feels great and helps me have a better over all attitude. But my family comes home and I can see all of my hard work come apart before my eyes. I don't mind doing the normal cleaning, dusting, bathroom, laundry the stuff that homemakers usually do. What I do mind is doing everyone's dishes after dinner, making dinner, put food away, cleaning the kitchen after, picking up people's shoes, their clothes off the floor, toys, video games, all the stuff they got out themselves. Why am I the maid? Should I wear a maids outfit to just make myself clear?

I don't really have any friends around here. I mean, don't get me wrong. I have friends, but none that are close to me currently. This makes it so that I hardly ever get out and do things with other adults. I do leave my house on a regular basis, but none of these outings are social in anyway. Doctors, doctors and more doctors. This doesn't exactly help my actuality this makes it worse. Coming home knowing the stretches I have to do with Rya, the new stuff she has to wear, the medicine she has to take. There is a point almost weekly where I want to give up.

We also have been having financial issues, in the sense that we are poor. We don't get paid a lot and living paycheck to paycheck is our life currently. It sucks. We can't do the things we would hope to do and live the life we want to live. Obviously this sucks.

Last, and maybe the least, but not in my eyes. I got one Christmas present. That is right, one. I realize I am adult and so it should not be a big deal to me...well it isn't. But when you receive one gift that you love and are really excited about, you think it is a big deal. Well I got a Seattle Seahawks shirt for Christmas from my mom. This is all I got, well I got a magazine that had recipes in it and replacement glasses for our kitchen. So the only personal present for me was the shirt. Zoe borrowed it to wear, I informed her that she needed to be careful and bring it back the next day. is gone. Nowhere to be found, not at her mom's house and not at our house. What makes me the most upset is that no one cares. She doesn't care, my husband doesn't care, no one else cares. Also, I will never hear an "I'm sorry for losing your shirt". Nothing, I will be made to feel horrible if I am upset and it shows and it makes her upset. I will be the jerk, I will be the mean step-mother because I am upset that she lost my shirt and doesn't care. Maybe I am blowing this out of proportion, oh well. I will just blame it on the pregnancy.

I guess all in all I don't feel like a wife or a friend or a mother at times. I feel like a maid, a cook, a care taker and babysitter. I am sure all mothers have felt this way, or do feel this way. I guess it is my turn, and it sucks. I just wish one day my family would see these things and care, they can even pretend to care. Just show me some love or some sympathy.

Am I asking too much??

Saturday, February 20, 2010

Trileptal Side Effects

One of the side effects that Dr. Bennedict, (her neurologist) informed us about was a change in Rya's mood with her seizure medicine. She might become slightly more crabby over time. At first I thought nothing of this because Rya's disposition is always so happy. Well the time has come where I think the medicine and teething are taking a large toll on her attitude.

Don't get me wrong, she is still a happy girl and smiles at almost everyone she sees. However things like bath time, which used to be a wonderful time to relax, has now turned into a hurry up and get her clean and out before she has a melt down. I can't say for sure it is the medicine, or a combination of teething and the medicine. All I know is it is getting more frustrating on a daily basis with her. I am sure someone would come over and see her and think maybe I am blowing this way out of proportion. I am sure compared to children her age she is a wonderful little girl. But I am so used to hardly ever crying and always smiling. It is just kind of running me down lately and it doesn't help that I am feeling more and more fat these days.

Gaining 7lbs in a months time isn't exactly a point of pride....but alas it is what happened. I just wish/hope it won't get out of hand. But the bad part is my hunger seems to be getting more and more out of my control. Oh well....I guess there isn't really a whole lot I can do except give the little baby what he/she wants for the time being and pray it won't go straight to my hips. (too late)

Friday, February 19, 2010

Blood work and rehab

I asked my OB to request for my blood to be tested for the same mutations that Rya has, Factor V-Liden and MTHFR. I went to the hospital and had my blood drawn and was told it would be a couple days. Which I found to be odd because when Rya was tested it took two weeks. Come to find out it was going to take a little longer than the person originally thought. Anyway, all in all I tested negative for Factor V and positive for MTHFR. I am not super sure what this means, but we will try to get into a hematologist to see what they tell me. I am guessing it means the same ask it does for Rya. It isn't something to stress over until it is time to take birth control. But we will see.

Rya also had her first Rehab appointment. I think a lot of people equate rehab with physical therapy or drugs. In this case it is neither. It is actually medical doctors who use things such as Botox injections or orthodics to correct or help improve lives of people living with disabilities. Right now we have a list of things for Rya that we are doing. She is getting a certain type of shoe/brace for her ankle to help straighten it out. She also is getting some special tape to help with this issue as well. And she is getting a splint for her right hand so that she has to focus more on her left hand while playing. Lets all cross our fingers for this. I am not excited however....I don't like listening to her cry.

On a side small note, she got her new glasses and seems to be adjusting okay. She has her moments of attempting to rip them from her face and eat them. But for the most part she doesn't seem to mind them too much.

Friday, January 22, 2010

The Chaotic Life of a Mother

I have been reading my husbands blog for a while now and am impressed by his diligence in posts. Me on the other hand spend most of my time going crazy. My life is so busy and filled with stress I never seem to get a moment alone.

A large amount of "things" have happened since my last post and thought I might update those of you that actually do read this. (So not many, lol) First Rya is now 9 months old and weighs in at a whole 15 pounds. Needless to say she is a small one. And prior to her appointment she was crying non stop. And not just any crying, screaming like she was in horrible pain crying. So we waited it out, thinking it was teething for a few days until her appointment. Come to find out the poor thing had an ear infection. So we got her going on some antibiotics and within a day she was back to her old smiling self again.

Rya also had her neurology appointment that we go to every three months or so until she is a year old. (Which is her next appointment, YIKES!) She had been doing this weird lurching thing and we were not sure what on earth it could be. All in all her neurologist said she looked great and was progressing about 3-4 months behind. Which is where she thought she would be for her disability. But she was very concerned about the lurching and ordered an EEG be done right away. If she has a condition called Infantile Spasms then we needed to start her on a steroid right away. Only down side is the ACHT steroid costs $40,000 for one round of treatment. So we were crossing our fingers and praying she didn't have this.

We went home hopeful and not hopeful at the same time. But the neurologist finally called and answered our prayers. She is clear of infantile spasms but has a tendency for seizures. We start her on seizure medicine and as long as she doesn't have a seizure in two years and has a clear EEG she can get off of those. But if ever she has a seizure then the two year clock starts again.

As for me, I started physical therapy for some huge horrible knots in my back. I have to have a deep tissue massage twice a week. Normally a massage would be a wonderful thing. Not this, they are not there to make you relaxed. They are there to work the crap out of you. But I figure as long as it fixes my back, I don't mind.

I also had my 14 week appointment on Thursday. The doctor couldn't find the heartbeat with the dopler so we decided to find it on the video. There the little chili bean was, just growing away. He/She just had a quiet heartbeat. The baby looked good and we can potentially find out what we are having on the 18th of Feb. Cross your fingers!!!!

Well that is a short version of what has been going on in our lives. Busy busy busy!!!!