Monday, November 23, 2009

The Blah's

I was watching Cake Boss on TLC and comparing the different Dyson vacuums online and lost track of what was on tv.  I heard an old familiar (annoying) voice and saw that the last episode of John & Kate Plus Eight was on and Kate was talking about the divorce etc.  When that show first came on I liked it, but after a while it became obvious that the entire family was on the verge of falling apart.  I hate divorce.  With a passion I hate it.  Yes, I do realize that I am currently going through one and am not being hypocritical at all.  I hate it for families that have children involved.  If I could make my marriage work so that Macy Jane would have a "normal" family with Mommy and Daddy under the same roof I would do it.  In a heartbeat.  It isn't me that is suffering.  I am content and will move on but my daughter will be the one that has the scars from our mistakes.  Enough of that talk : )  It is what it is and I will help her as much as she needs.  I'm just glad that what we are going through isn't all over the news and in every tabloid.  So sad for the Gosselin kids. 

A few updates about MJ:  She said "Nana" 3 times tonight.  Yay!  That is the first time for that.  She says Mama, Papa, Moe Moe but she hasn't ever said Nana or Daddy.  Now we are working on Daddy and Dee Dee (for her Aunt).  Macy Jane's speech is my main concern as far as her cognitive skills go....she can say some words and we do sign language, but she is still pretty delayed in that.  I know that she will catch up in her own time and I'm not going to force it.  : ) 

I received a call from Whitney (the manager of the CVICU at LeBonheur) last week.  She said that the employees of the CVICU were asked to nominate 10 children that were most memorable to them and Macy Jane was selected!  I received a postcard in the mail today that explains more in detail about the purpose behind the nominations:
"A new tradition is starting at LeBonheur Children's Medical Center:  Luke's Tree!  Luke's Tree is in memory of Luke Haberman, who courageously fought against Hypoplastic Left Heart Syndrome.  We realize the strains, both emotionally and financially, that heart issues can cause.  We know that this year has been tough economically for a lot of us, especially families of heart patients.  We are looking to make this season brighter for heart children and their families" 

So thankful to the staff at LeBonheur that nominated My Girl.  When I got off of the phone I cried.  (I'm such a baby these days...sheesh)  I cried because she has been through so much and deserves all of the happiness that we can give and provide her and she is being recognized for being a fighter and for being such a strong kiddo.  I don't know what to tell them to give her for a present, I'm guessing some Wiggles movies or Elmo.  I am so thankful that I was recently able to buy MJ's Christmas presents and get that out of the way.  God has blessed me way beyond what I deserve and I am just glad I was able to get her some pretty cool presents if I do say so myself, lol.  We aren't guaranteed another day on this earth and every day whether good or bad is special to me and MJ. 

I suppose I should get my happy tail in the bed.  I haven't been feeling too groovy the past day or so, but I am hopeful that tomorrow will be better and I will get out of my funk mentally and physically.  So much to be thankful to God for this year....I'm so blessed!  Goodnight. 

Sunday, November 22, 2009

It's Beginning to Look A Lot Like Christmas!

I love all of the holidays, but Christmas is my favorite of them all.  One of my favorite things about the holiday is all of the decorations, specifically the tree.  There's just something about all of the colorful lights (I love color!) and the ornaments that I have collected over the years.  When I bought a house of my own, my mom gave me all of my ornaments that she has collected and saved for me since I was a kid.  Some of these ornaments have an extra special meaning to me this year as there were some from my Granny Sadler.  She would buy all of her grandkids an ornament and somewhere on them she would put our name and the year.  I will miss that tradition, but thankfully I have all of the memories :o) 

Since I bought my house in '05, we've had a yearly tradition of decorating the house.  My Mom and my 2 Aunts come over and we make a girls weekend out of it.  This year was one of the most fun because my sister flew in from Pensacola to join us and most of all Macy Jane was old enough to enjoy it.  I wish that I had brought the video camera out and filmed her.  She has always liked looking at the lights, but this year she helped hang the ornaments and when it was all done she walked around and around the tree just saying "Wow", "Whoa", "Wook Mommy" (look) as she pointed to ornaments.  I am hoping that I was smarter than the average bear and put all of my breakable and special ornaments more towards the top of the tree.  My favorite "theme" of Christmas is gingerbread men and reindeer.  I am not the decorator that likes the fancy frilly things...I suppose one could say I am a kid at heart.  Anyways, on my coffee table is my gingerbread "village" and one of the things I have is a gingerbread music box and Macy Jane is obsessed with it!  She can wind it just a little bit and will just sit and stare at it with the cutest expression that I can't put in to words.  Shes just too darn cute!  My house is all decorated and most of the lights are hung outside but I won't actually put the yard stuff up or turn the outside lights on til after Thanksgiving. 

Tonight I discovered that my freaking freezer broke....again.  This is the 3rd time and the warranty is up on it.  I have called and complained to Sears because the freezer isn't even 3 and 1/2 years old.  They refuse to do anything about it.  So guess what?!  I will never buy any appliance from Sears again.  Ever.  Thankfully I was able to make room in my house fridge/freezer.  Ugh!  When it rains it pours. 

A few weeks ago we increased the dose on the meds we give MJ for the Cyclic Vomiting Syndrome.  She is just now at the dose that most docs start kids out on.  In the beginning we thought the meds were helping but then she had a cycle that lasted for 8 days....a record.  That's when I called and the dosage changed.  It's been 2 weeks and she is starting another cycle, just in time for Thanksgiving.  I am trying to have a good attitude about it, but to be honest it just plain sucks.  I cannot even describe how pitiful she is when she is doing nothing but vomiting for 5 days straight and not being able to tolerate anything but pedialyte and sometimes not even that.  I haven't given up hope that the meds will work.  I know that I need to be patient but I cannot stand to see MJ suffer.  She is so happy and "normal" when she is in between cycles and she deserves to not ever have to throw up again.  She's done her share over the past 2 and a half years.  A few nights ago I was a little upset and spent a few hours on the net looking at research studies that have been done with other children that have CVS.  I couldn't find anything about timelines that it takes the meds to have their full effect, but one study said candidates had been on the meds for 5 months.  MJ is going on 2 months and she is at the bottom of the dosage range, so we have lots of wiggle room.  I just try to keep thinking positive thoughts that one day my child will not have to suffer every 2 weeks with this wretched syndrome.  She WILL get there, it's just going to take baby steps, just like everything else has.  *sigh* Until then, we will continue to go to the GI doctor every 3 weeks to monitor the progress.  God won't put more on me than I can handle.  Repeat 1000 times daily in my head. 

The stress of the past few months is finally catching up to me I suppose.  I can only ignore it for so long and not do something about it.  In the past when I've been stressed my hair would fall out and I gain weight super easy.  Well, it's happening again!  Ugh.  I'm not gaining weight, (thankfully) but I'm not losing either.  I recently switched to a different diet and nope not losing.  So, it's back to Weight Watcher's for me.  That is what I did when I lost the first 60 pounds and should have never stopped, but that is the past.  I've got some other health things that have to get under control and once that happens I know I will start losing again.....and exercising which starts at 0430 in the am!  UGH! As for my hair....it is thinning out again.  I hope that corrects itself as well :o)  Bethany bald?  I don't think so.  2010 is my year to get everything in order and start living again....I'm just going to start early and get all of the kinks out before the year actually starts.

One other thing I want to mention....Christmas for me is not about the presents, decorations, or family gatherings.  All of those things are just a bonus.  I am thankful that Jesus was born in a manger and I 100% recognize that Jesus is the true meaning behind Christmas.  It's sad that people forget that or don't believe in God at all.  I couldn't imagine going through the stuff I have without Him.  I can only imagine the basketcase fruitcake nutball I would be (more so than I already am ;) 

Hope everyone has a great week and a very Happy Thanksgiving! 

Friday, November 13, 2009

Sadness

I got a call from my mom while on my way to work this am and she told me that my Granny had passed away in her sleep.  My Granny Sadler was the grandparent that I was closest to and she will be greatly missed!  She was an excellent cook and I will never forget that she couldn't bake biscuits without burning at least one batch.  : )  Funny the things I have remembered throughout the day today when I have thought about her!  Macy Jane was her pride and joy and not a day went by that she didn't ask about "the baby".  So many fond memories and I can only think of one instance where I got upset with her.....when I was a young kid me and my cousin Sara decided to play with Pop's shaving cream.  Well, Sara got carried away and made a huge mess, lied about it to Granny and I got the spanking.  Ugh!  I probably deserved the spanking for something else that I didn't get caught for, lol.  I went ahead and went to work today anyways because sitting at home wouldn't have done any good and it was an overtime shift for me which is kind of important right now.  Gosh I will miss her but I am so thankful that she is in heaven smiling down on us.  She is pain free and living the heavenly life now!  My dad seems to be holding up pretty good but it's hard to tell with men and their "machoness". 

Tonight I did something I haven't done in probably 8 months or more....took a long bath with the jets on full blast and lit some candles.  I needed to relax and that was the perfect answer!  I met my Mom and Macy Jane at IHOP after work since I was craving an omelette and although the omelette sucked, the company was awesome.  It took maybe 5 minutes to rock MJ tonight, she was worn out.  Moe is out with my cousin and some friends in Memphis so the house is all mine.  So quiet!  I wish I could sleep but my brain isn't ready for that.  My dog is curled up in my bed and might I add that he is curled up on my feet.  Ugh!  I am the type of person that has to sleep with at least one foot/leg outside of the covers so my feet are smothering with him on top of them.  He's sleeping so good so I won't disturb him.....yet. 

Macy Jane had a good day today.  She is starting to learn that when I say "stop whining" she knows what I am talking about and instead of whining, she pouts.  It is the cutest thing ever and I can't help but hide my face in a pillow and laugh when she does it.  I am developing my own little plan or schedule for our days together when I am not working.  The key to her eating orally is me getting her on a schedule where she has the chance to eat finger foods at least 3 times a day and feeding her via G-tube after she has eaten orally.  I don't feel comfortable yet with cutting back on her tube feedings and letting her get really hungry.  She is still underweight for her age etc. and is slightly smaller than she was a few weeks ago...this last round of CVS took its toll on her.  However, I'm going to do what I should have been doing a long time ago and see how far we get! 

I should probably end this and get in the bed.  My sister and brother-in-law are driving in to town tomorrow and staying til Monday or Tuesday for the funeral.  It will be soooo good to see them!  Dee was coming in to town next Friday for Thanksgiving break anyways but now I can see her a few days extra.  Yay!  My siblings mean the world to me and have been there so much for me lately.   Can't wait until we are all together : )  Tomorrow will be busy with me cleaning and getting the house ready for my company....I've gotta balance that with taking MJ outside and playing with her in between.  It can be done.  It will be done!  Goodnight!!!

Thursday, November 12, 2009

Back on Track

I will once again attempt to start blogging and hopefully this time will be the time that I actually do it for more than a couple of days!  For a while I was caught up in the facebook trap and constantly updated on there, but I am growing tired of facebook these days and realize that I spend entirely too much time on there just doing stupid stuff like quizzes etc.  I still facebook but not so much : ) This blog is intended to update close friends and family as well as any heart/DiGeorge parents and kids out there that I am friends with. 

This blog is focused on me and Macy Jane and the things that happen that I want to be able to look back and read about in a few years.  I recently went back and read the blogs from my pregnancy and MJs first year and although it brought back lots of emotions, I enjoyed reading them and seeing how far she has come! 

There have been lots of changes happening in our lives over the past several months and without going in to every personal detail, I will just just announce that after 6 years together Steve and I have filed for divorce.  We do not hate each other and it isn't an ugly, nasty, bitter divorce.  Although I hate it for my daughter's sake, it is the best thing for me to do and I am at peace with the decision.  I am thankful to God that we are able to remain on friendly terms and it is my hope that it will be easier on MJ because of that.  ( I know it won't ever be easy for her, but ya'll know what I mean) I am so thankful to God also that everything has worked out so perfectly since Steve moved out.  For the first time in a long time I am trully happy and have a new found confidence like never before and my faith in God has grown.  All of my needs have been met in every area and I'm grateful for that.  I was able to return to full time status at work and get insurance for myself.....and I have a relatively new house and car so I'm good.  : )  Most of all, Macy Jane is happy and healthy which is priority number one for me!

This week has been pretty hectic so far for us and I haven't been able to spend as much time as I would like with Macy Jane.  I picked up 2 extra shifts at work since the holidays are coming up and I am anti-credit cards now!  I do love getting out of my car after a long day and hearing her screaming at the door and pounding on it for me to pick her up.  Completely makes my day : )  Today was my only off day this week and I had the opportunity to spend it at the dentist having a root canal performed....again.  The actual procedure doesn't hurt but my mouth is soo sore right now.  I knew it was bad when he told me to take 600mg of Ibuprofen every 4 hours for several days.  I prefer to have a liver when I am older so I don't think I will take quite that much.  Unfortunately I think I have soft enamel or something because eventhough I do everything I can to not have cavities etc I still end up with them  almost every time I go in for a cleaning.  My sister and dad are the same way.  Argh!  Despite all of the teeth problems, the rest of the day was great as we spent it with my cousin Kenneth in Ripley. 

Macy Jane is doing okay.  She has been on the meds for her newly diagnosed Cyclic Vomiting Syndrome for over a month and originally I thought they were helping but last week she had a cycle that lasted for 6 days total.  If you aren't familiar with CVS please google it rather than ask me about it.  Her GI doc increased her dosage on Wednesday so I am hoping to see an improvement.  He did tell me that it will take a few months for us to see the maximum benefit of the medication.  I hope it works! 

Her development is coming along.  She has been walking since the end of spring and just recently started to run a tiny bit.  We are working with her to learn how to walk up and down stairs the proper way and to get her depth perception on target.  When she attempts things the first few times she is very fearful but it is amazing how fast she catches on.  Her speech is still pretty delayed but she is starting to say more and more words that we can understand and she signs some words that we use all of the time.  She eats orally now but it still isn't enough that I can stop bolus feeding her with the g-tube.  She will eat a couple bites of something and actually bite, chew, and swallow which is such a major step for her.  She used to gag on everything if she swallowed it.  I think she will be eating 75% orally by the age of 3.  That is my goal anyways and if she eats more that is fine with me : )  I am trying to get us on the schedule of eating 3 meals a day at the table and trying to find foods that she will taste and want more of.  Not an easy thing to do but I have to do it!  I'm so proud of her and I get the greatest joy out of seeing all of the new things she learns and does each day.  There isn't a day that goes by that she doesn't do something new. 

Well, I suppose I should end this and get in the bed.  I just found out that I am working for sure tomorrow and need my beauty sleep!  0445 comes toooo early for my liking.  Please remember a sweet baby named Ruby in your prayers.  She is a 3+ month old little girl that was born with the same exact heart defect Macy Jane had and DiGeorge.  She underwent her first open heart surgery on Monday and will be having her chest closed tomorrow.  Just lift her up in your prayers, please!  Goodnight.