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.

Thursday, August 13, 2009

First off, I know what some of you may be thinking. Why in the world would I get on facebook and ask for advice on my daughter from people I haven't seen in years etc. I do not automatically go and do exactly what people say to, I use my brain and decide for myself in the end but occasionally it is nice to get other peoples opinions that are outside of the situation or may have experienced something like this or know of someone that has. : ) Let's start wth her birth and the events that followed. A few days after she was born, she started projectile vomiting her milk. The diagnosis? Severe reflux. The worst that some of her doctors said that they have ever seen. NOTHING that we did seemed to help. We tried every medication known to man, PPIs/H2 blockers, reglan, zosyn etc. We kept her elevated after eating. When she had a feeding tube in her jejunum and an NG tube suctioning out her stomach, she would STILL reflux and wretch and gag. We went as far to have the Nissen Fundoplication (a surgery to reduce/stop reflux) in July '07. By the end of August '07 she was again throwing up. (surgery was supposed to last years....not days) After her heart surgeries she dumbfounded the docs with her reflux. How did we know it was reflux? Let's just say she had many tests done that proved it. On top of the fact that she had the classic signs, the certain head extension when sleeping, funny colored tongue, breath etc. Nothing we did helped. So, weighing in at 11 pounds, we brought her home from the hospital at 6 months of age. She continued to throw up multiple times a day, but she gained weight like a champ over the next 6 months. By the age of 1, she had tripled her birth weight just like any "normal" child should. The entire first year of her life I don't think that there was a day that went by that she didn't throw up multiple times with the exception of when she was on the ventilator and the month that the Nissen worked. Her doctors said (including GI) that she would grow out of it eventually and as long as she was gaining weight and not showing signs of aspiration we shouldn't worry. So, worry I did not. I became used to her patterns of throwing up and could always be found with at least 5-10 "throw up rags", several spare outfits for MJ, and extra shirts for myself. It did not bother me to be thrown up on, she hated doing it as much as I hated it for her. However, after she would throw up, she would feel so much better it seemed. 2 weeks before her first birthday, her throwing up changed. She went for days and didn't throw up one time! Heaven! I thought that she was finally outgrowing it just like the doctors said that she would. About a week before her birthday, she started a pattern that would repeat itself every 2-3 weeks like clockwork for almost a year. Day 1 she would throw up one time. My red flag that we were starting a long week. Days 2 and 3 she would throw up a couple of times and sleep more and more after each episode. Day 4 and part of 5 she would wake up throwing up bile and would just throw up pretty much non-stop 24 hours. It was those days that I had to stop giving her milk and just give her pedialyte for 48 hours to keep her hydrated. Day 6 she would either wake up and be back to normal or she would wake up from a nap and be normal. Once she stopped throwing up, she would drool more than any child I have EVER seen in my life. We are talking entire shirts being soaked. On top of the drooling, she would chew constantly on hard plastic things. Her diapers were well......let's just say they were like that of someone that had a stomach virus. Liquid/foul etc (sorry not trying to be gross!) We started to notice that these episodes correlated with the timing of the eruption of a new tooth. (her first tooth broke through on her 1st birthday....she had just changed the puke pattern and gotten over the 1st episode) Needless to say, she gained weight then she would lose it during her sickest days when I could only give pedialyte (only 100 calories in the entire bottle) It was usually like clockwork, every other Sunday she would get sick and she would miss therapy on Mondays every other week. Or every other Friday therapy. Sometimes, she would go 2 and 1/2-3 weeks between episodes other times she would go a week in between. During the off times, she would not puke one time or show any signs of reflux. (when she did throw up, you could hear her swallowing 100 times, her tummy rumble like she had gas and then out it would come) Of course I mentioned this to her doctors and they all said as long as she was gaining weight and developing it wasn't anything to worry about and that it was just MJ. I didn't worry. I just dealt with the fact that 2 weeks out of a month my baby would feel like crap and that was very hard. On days 5 and 6 she would do nothing but sleep. When I say that, I literally mean she slept 23 hours a day and wanted nothing but to be held constantly. Dr. Frizzell told me it was ok to stop going to a GI doctor. My reason for asking him this? I went to her with MJ for a checkup and she referred us to MJs surgeon to handle ANY issues with her g-tube and Dr. Frizzell was already adjusting her meds according to her weight gain. GI doc had no advice when I talked with her. So, I figured that was one less doctor on the case and that I wasn't going to waste my money or put MJ through seeing a doctor that wasn't doing anything. Once again, Dr. Frizzell said that this was fine with him. About a month before MJs second birthday, she changed her throwing up pattern again. She would throw up once a day for about a week, usually after the first feed of the morning and it would have tons of mucous/saliva whatever you want to call it in it. She would drool for a bit and that would be it, she would go back to normal. On day 3 she would throw up a little more but she would take a short nap and get up and play like normal. Days 4 and 5 she got back to normal. However, during the "off time", she would sometimes cough like she was going to puke and sometimes would. The past month, she has reverted back to the every 2 week thing where she throws up really really bad. She has 2 of her second year molars left to cut on the right side top and bottom. After those 2 teeth she will have all of her baby teeth. Today is a prime example. MJ has been sick since last Saturday. She threw up really bad yesterday and part of this morning. Around 1pm, she threw up all of the juice that I had given her (a special drink we order that is clear fluid with lots of calories) and she napped for 15 minutes. After that, she got up and started playing like normal and hasn't acted sick since then. I fed her and she didn't cry (she normally would scream if she saw me with the tube and syringe when she was sick) or get sick. It was as if someone flipped a switch. What told me she was back to normal was that she wanted a salty tortilla chip and she licked it. She is drooling and the main thing is that she is chewing on everything again and will for a a couple days. She will have about 7 days without throwing up and then we may start the process over. Over the past few months a couple of people have very innocently recommended that I take MJ back to the GI doctor to figure out what is going on with her. The latest person was her new therapist at her feeding group that she attends on Wednesday. (I am not mad at these people, just trying to figure out what I should do) Here is what I have thought over the past year and 2 months. I found it very odd that her throwing up patterns changed right around the time that she cut her first tooth. I did some investigating on my own, read some medical articles and talked to some parents online at a reflux website. Teething aggravated reflux. So, I figured that she threw up like that because of her reflux which was aggravated by her teething process. Pretty much every 2 weeks there for many months I would open her mouth and either see where she was cutting a tooth or actually see a tooth popping through. I didn't worry abouot it because like I said her doctors could never figure out her throwing up from day number 1 and she had had every GI test known to man. Now I am wondering if something is going on with her? One person has suggested that maybe she is allergic to something and it builds up in her system and her body's way of getting rid of it is throwing up. Others have said change her meds around. My family says leave her alone she has been through enough and she is growing and developing along her own growth curve. I always said that I would wait until all of her teeth were in and if it continued, my theory of it being related to teething would be shattered and I would take her to a new GI specialist. The reasons I think it is reflux? The amount of mucous she produces during the sick week, her tongue turns white and then green at the back of it, and her breath can get quite foul, she swallows constantly and tilts her head back after a feeding and will cry when she even sees me getting the juice/milk out. I also don't know if this is related to the DiGeorge Syndrome. So far, the only thing we have seen that she has of this syndrome is her heart defect and maybe some of her communication delays. Who knows though? Every child with DiGeorge is different and it seems that MJ will be one of the ones that would never know she had it if we hadn't tested for it. At this point, I am doubting my original decision. Part of me wants to take her in and then the other part says why waste the time, money, and stress on MJ when they are just going to want to repeat tests that have already been done before and hear the same word: reflux. When she feels good, she feels great! She acts and plays like a normal child and it makes me so happy and makes me long for a time when she will not have to throw up constantly. Today, I sprayed some resolve on my rug and was letting it soak. I went to the kitchen to get a scrubbie and i came back and saw MJ with a throw up rag (clean) rubbing the resolve in the carpet. Like I said, she hates throwing up as much as I hate cleaning it up. She just cries and screams and kicks when she does it. It breaks my heart to see her like this and stresses me out because I try to maintain her hydration and doing that 24 hours a day can be exhausting. She is SO worth it though. Anyways, I know that this is long and drawn out and I appreciate ya'll reading this. I am open to any ideas or suggestions or words of wisdom. I hope and pray when she cuts these other 2 teeth that it will be over. That would be SO nice! I dream of the day that she can run and play and not have to worry about getting sick. BTW-she does see an immunologist/allergy doc once a year and she has never said anything about allergy testing. MJ has never had dry red skin, breakouts, etc. Just an fyi.

Tuesday, July 7, 2009

As most of you know, MJ had her routine checkup last week with her cardiologist, Dr. Joshi. She had another Echo, which she did so well through, and so far everything looks "ok". There is some tissue growth around her stent, which is to be expected over time and the right side of her heart is actually a bit smaller than it has been. However, it is time to go ahead and have another heart catheterization to look at everything and dilate her pulmonary arteries now that they will be able to reach them. The heart cath will be during the month of September, we do not have a specific date set up yet. The other part of the story is that it is time for her to have her third open heart surgery. During the heart cath, they will take some measurements to see how big of a valve that they can put in her heart. Hopefully, she has grown enough that they can put in a valve that will last her until her early teen years. This is the same surgery that she was supposed to have last year but was able to avoid due to opening up her conduit. A lot of people ask me how I am doing and if this is a good thing or a bad thing. First off, this will hopefully be a good thing for MJ in the long run. I know her anatomy is confusing to people that are non-medical and to be honest with you it is confusing for medical people too, including myself. Right now, she does not have a pulmonary valve and without the valve there is higher pressure in the right heart which long story short the right side has to work harder and is under more stress which makes it big and dilated. The amazing thing about the right side of the heart is that it can remain like this and still go back to a more normal size and function once the problem is corrected. However, there is a point where its gone too far and won't return back to normal or close to it. The tricky part is knowing when that point is. In Macy Jane's case, we have had an extra year for her to grow which has bought us 2-3 years (an estimate her doc gave us) on the other side of the valve. That means when she gets the valve, it could last til her teen years instead of 9-10 years of age. So waiting a year was a good thing for her. The doctor said if everything goes well, we can expect her to be in the hospital at the most a week. So, hopefully everything will go well!I am doing okay with all of this. When Dr. Joshi told us that she needed a cath I was fine with that since I know she will have to have those forever, and when he told us about the surgery, I was not shocked at all. Again I can't explain the peaceful feeling that God has given me. I am going in to this with the attitude that I just want to get this surgery over with so that we don't have the black cloud of surgery hanging over our heads for several years. Dr. Joshi has had almost a year to evaluate the new surgeon at LeBonheur and he said he has been blown away by him and his abilities. Thankfully I trust Dr. Joshi and feel that he knows what is best for MJ. We really couldn't ask for a better cardiologist. I'm also eager to get the surgery over with before the holidays hit and definitely before MJ starts preschool when she turns 3. I pray that her recovery will be a fast and complication free one. I am anxious though because she is so much bigger now and knows what she wants etc. One advantage that I have though is that I know my little girl inside and out now and know how to comfort her. For her other surgeries, I had never held her for long periods of time and didn't really "know" her. Of course I have cried, I am female, human, and a mom. I cried because I know that she will be in pain and will be scared and there is always the life threatening aspect that I do not focus on. Like I said before though, God comforts me and I know he will give me strength on the day of surgery and the weeks after. Thankfully, kids heal so much faster than adults and she will be back to her old self hopefully before Christmas! If ya'lll would add her to your prayer lists now, I would appreciate it. On a positive and cheery note: I think we can officially say that Macy Jane is walking now! At my sister's house, she has walked everywhere!! I'm so excited. We all clap and scream Yay Macy when she does it. It's so funny, when someone is in the room and she does it, she will stop and smile and clap with you, lol. I've been waiting a year for this (yes I know she is 2 but most kids don't walk til their 1 ;) and it is the sweetest thing to me to watch. One thing that I am happy about is that by the time she has her surgery she will have this walking thing down and I won't have to worry so much about not being able to pick her up under her arms for 6 weeks. I suppose that is all for now. It's a lot I know. I don't think I mentioned when the surgery will be. We are not for sure yet, but I am going to ask that it be done as soon as possible. We know it will be during or after September, but I want it done before the middle of October so that she can be "normal" by December. She also just had another molar break through yesterday....yay! Only 2 more of these pesky darn teeth! She was sick Saturday and half of Sunday pretty bad with her tummy, more than she has been in months. Hopefully this was the last time ever!! Wouldn't that be nice? I could stand not ever being thrown up on again ; ) I hope that you all are doing well and enjoying your summer! Once again, please continue to pray for my sweet miracle baby : ) (Yes, while I do realize that she is not a baby, she will ALWAYS be my baby!) Love, BJW

Sunday, June 7, 2009

In a conversation about former South African president Nelson Mandela, Clinton talked about Mandela's ability to forgive his captors."Didn't you hate them?" Clinton recalled asking Mandela privately, referring to Mandela's final steps as a prisoner walking to freedom."'Sure I did,'" Mandela said, per Clinton. "'I felt anger and hatred and fear. And I realized if I kept hating them, once I got in that car and got through the gate I would still be in prison. So I let it go because I wanted to be free.'"I had not heard about this conversation between Bill Clinton and Nelson Mandela (took place a couple of years ago) until I was listening to the radio tonight. Don't laugh at me, but I was flipping through stations and heard Delilah talking about this so I parked there for a bit. She didn't quote word for word but she put it in her own words. She talked about how so many times in our lives people will let us down, hurt us, intentionally knock us to our knees, make us mad, bitter etc. Most people harbor that anger and bitterness in their hearts for a long time-possibly forever. And for what reason? How does that help you? All it does is give that person or situation power over you and your heart. Hmmm....that got me thinking! I am that person. Quick to anger and hold on to that anger until it turns my insides ugly and seeps outward and makes me a miserable, bitter, and cynical person. Not the person that I want to be and definitely not the role model that I want to be for Macy Jane. I would be lying if I said that I don't struggle with this daily....sometimes hourly :) Some days I just wish that I could flip the switch inside of me and be this person that never lets anything bother them and is always happy go lucky etc. However, I am who I am and can only work to be a better person. I've never really thought about how letting the angerness, bittnerness, and hatred overcome you will leave you in a self created prison cell and allows that situation or person complete control. Life is too short to go through it a miserable person! I know that I've missed out on many things because of my stubborn self, but hopefully I will continue to have these revelations periodically to help keep me in check. This past week was a long one and in many ways a difficult one for me, which I do not want to discuss or want sympathy for, but I felt all of these feelings building inside of me again....thank God I realized it before they overtook me again. This note was simply for me so that I can look back on it perdiodically and remember it and keep myself in check. I'm sure I'm not the only person that struggles with this so maybe this will help someone else as well.

Thursday, June 4, 2009

Where have the past 2 years gone? It seems like yesterday in some ways that I was on my way to the hospital to have my sweet baby girl. Yep, my sweet baby girl is now a little girl.....there's no baby about her. How exciting to me!I was talking with a few girls from work the other night and they were asking me questions about how MJ is doing so I figured it was time to do another update on her progress. Last week, she officially took her first steps without any prompting, assistance, or therapists in the room! I was sitting on our loveseat and MJ was climbing on and off the big couch. The next thing I knew, she was walking in between the couches to get to me! She did it a few more times for me, long enough to get a picture of her :) Each day she continues to take a few steps more and I'm sure in another month or two she will be taking off! She is already figuring out that walking on her feet is more comfortable and easier than crawling on knees. Today, she started just holding on to the walls to get around the house (unless I said the words "do you want to watch Elmo? Instant super fast crawling to the living room :) We have been waiting for a year to see her do this and what a long way she has come! Awesome considering she wasn't even pulling to stand until January of this year! One of the "problems" that we will have to deal with is the fact that MJ has way too much flexibility in her joints/muscles-specfically in her ankles. She tends to stand with more support on the inner portion of her ankles and because of this, she doesn't stand on a flat foot. We are in the beginning stages of having AFO's made specifically for her (AFO is ankle foot orthosis) legs. When I was first approached with them, I pictured Forest Gump and the awful looking metal braces on his legs and the kids making fun of him. Once again, I was saddened for MJ because on top of her scars etc she would have to wear braces for however long. I have done some research on them since then and now I have a different mindset. They aren't as hideous looking as they once were and even if they were, they are what she needs at this point in her life and this too shall pass and I can only try to teach her to be confident and walk with her head high no matter what adults or kids say about her (yes....there are some immature adults out there that still make fun of kids with physical challenges) because God made her exactly how He wanted her to be and she is special. (however, she does have a red tint to her hair and I'm afraid the attitude to go with it :) I think her PTA is still leaning more towards making her have the AFO's that go up to the knee, but I am secretly hoping that by the time it comes to actually having the molds made, she will no longer be hyperextending her knees. I think in watching her in her day to day activities that she doesn't do it enough to have it be a problem long term and that she really doesn't do it very often anymore. However, I am not the expert and if the experts still think she needs the ones for the knee, we will go the route. Anything to help her! That is a prayer request though that her muscles continue to develop and become stronger and that she will only need the braces for her ankles. When she has shoes on, obviously I cannot see her ankles but she walks on her feet flat. Put sandals on her though and its back to walking on the inner aspect. I guess only time will tell :) If she does have to have the longer ones, I pray they come in Elmo because I think that is the only way she will wear them. Her PTA Kerri has a pair that she tried on MJ a few times and every single time she used them MJ would scream and cry until they were removed. It kind of upset me because she was so upset that I couldn't even console her, so we haven't put them back on since then. Maybe once we have some that fit her perfectly she will be ok with them. Baby steps baby steps with her :) I am really hoping that by the time we go to Disney at the end of July she will be walking primarily on her own without too many accidents. The second question that someone asks me no doubt on a weekly basis is "Is she eating yet?" Eating? Yes. Eating enough to sustain life or even resemble a full meal? No. So, I usually just answer no and that we are working towards it. A lot of people do not realize that for whatever reason over the past year she was sick every other week (no lie-it was like clockwork-every other Sunday it started) with throwing up. It was a 5 day cycle where she would throw up once on the first day, two or three times the second day, and the 3rd day she would wake up throwing up bile and would proceed to throw up pretty much non-stop for 2-3 days and she would do nothing but sleep for those days. We could only give her pedialyte and hope she kept most of it down, which would explain why for several months she didn't gain any weight. Thankfully, she has not done this for a month now! However, instead of throwing up every other week she now throws up every morning after her first feeding and maybe another time during the day depending on the day. The difference is that after she throws up a little bit she is fine and she will play like nothing has happened. The past year was very hard watching her go through this and having the doctors tell us it was her reflux. We think we have a pretty good theory in that her teething aggravated her reflux and with each new tooth came a new episode of puking. Most people think we are nuts when we say it, but if you count 2 weeks before she got her first tooth (on her first birthday) to a month ago, the numbers add up with the amount of teeth in her mouth today. Maybe we are nuts but it helped my mental state to blame it on teething! All of her primary teeth are in (the last one just popped through today!) with the exception of her 2 year molars and tonight I made a discovery after she fell asleep and she has one of them already! Maybe it isn't teething, maybe it is. All I know is that she is 95% better now that she has all of her normal teeth in........Okay, I chased that rabbit for a while, now back to her eating. Here in the past few weeks, she has begun to feed anyone and everything, including the dog ;) She will even feed herself pretend food and some real food. In the past, she has eaten a half of a jar of baby food for me in one sitting and that's it as far as actually consuming a larger quantity. The days of me being able to give her a bite are OVER. Her independence is starting to appear and she wants the fork or spoon and she wants to do it herself. Otherwise, you get violent head shaking no and pursed lips. Thankfully I am one of those people that does not care if she makes a mess of me, herself, or anything in my house. On any given day if you come to my house the living room and kitchen will look like a playroom and Elmo will be on the TV. (don't worry, I clean it up every night only to repeat the process the next day!) She will mainly lick things to taste them and she will swallow liquids and pureed food with a few lumps. Two things that she will always taste are white cheese dip and refried beans and chips. Anything that is very spicy or has a bold flavor she loves to taste. She will lick the seasoning off of anything and then try to feed it to you......yummo! lol. She also likes potatoes (baked or mashed) Within the last week, when I fix my plate she will climb up right beside me, steal my fork or spoon, and proceed to stick it in my food. Last night, we had meatloaf and baked potatoes and she actually got a little meat in her mouth and didn't freak out (remember she doesn't like solids) and she swallowed a little bit of it, more than once. The potato did she ok with as well. Eventhough she isn't eating large amounts, at least she is putting things in her mouth without making herself throw up. This time one year ago, if I fed her anything by mouth she would freak out and throw it up. We have made huge progress, but to those that have never dealt with this it seems like we are moving at a snails pace. I read a note I wrote several months ago and in it I talked about how if I put certain things like carrots in front of her she would make an awful face and couldn't tolerate the sight of it. We have certainly moved on from that, I don't think there is anything that I set in front of her that she immediately frowns at. She may not touch it, but she can tolerate the sight of it, which is a step on the ladder. She still has speech therapy on a weekly basis and her speech is starting to come along. She says a few words and actually says them in appropriate situations. Her vocab consists of Mama, bye-bye, hello (sometimes it comes out wrong!), hi, elmo, and tonight she brought me a book and said the word but left the "K" sound off...she said it more than once so I counted it as a word. She knows a tiny bit of sign language such as drink and more and all done. She would know more but that is honestly my fault. I haven't learned it and what she has learned she learned from Shannon, her Early Intervention specialist, and Jenn, her speech therapist. I have a book of signs and some handouts and I am trying to learn some to teach to MJ to help her communicate until her speech is caught up. Her ST is confident that she is on the brink of putting two and two together in her cute little head so I hope to hear a lot more words in the coming months. I can say this, she babbles all of the time now which is a new thing as well. Today, I took Macy Jane for a completely new experience. We attended a feeding group session at Lebonheur's Early Intervention and Development (LEAD). I wasnt sure what to expect or how MJ would react, although I had a suspicion. We walked in to a room that had a table setup with high chairs and booster seats and there were 3 therapists and 5 kids. The therapist gave each of them a washcloth to put in the soapy water to clean their places, and started by putting a chip in front of each child. MJ would normally pick the chip up and lick it but today....NO WAY! That bottom lip came out and she the poochy lip disease took over. I wanted to laugh because she looked so pitiful in the beginning with that expression, but I didn't. Instead, I told her to turn around and I just put my hand on her back to let her know I was there and the boogy man wasn't going to get her, lol. Next, she put a spoon of BBQ sauce in front of them followed by baked beans, diced hot dogs, ketchup, and juice. It was interesting to me to observe the other children, who were all under the age of 3. One little boy would touch everything and had everything all over him, but would not put anything in his mouth. Another boy would bite the chip, but that was it and he wouldn't drink his juice he would blow bubbles through the straw. Each child was different and it REALLY helped me to see the other kids. I have never met another child face to face that has oral aversions and is g-tube fed. It is hard having friends that have no idea what it is like to not be able to just feed your child, so it was refreshing to actually see other kids in person that have struggled just like MJ. It kind of gave me hope that you know what everything we are doing is working towards a specific results and we are getting there. As far as Miss Macy Jane's progress today.....she sat back and observed it. She was very quiet but watched everything intently. A few times she cried, like when they all sang happy birthday to one little boy :) Towards the end though, she really enjoyed watching the boy blow bubbles in his juice. She doesn't know how to blow bubbles yet or drink out of a straw and usually if she sees a straw in a cup, she takes it out and plays with it in her mouth. Today however, she kept the straw in the cup and held it in her mouth like she was going to blow bubbles. To me, that was a step forward. Thanks Ben (I think that was his name) for showing that straws in juice can be fun :) Hopefully we will be able to start going there weekly, I really think she will benefit from seeing her peers in action. Watching her today reminded me a lot of myself. Growing up and even today, I tended to be the quiet girl that would observe everything around me without saying much (unless I know you really well ;). I don't know yet if this is going to be her personality or if it is because today was the first time she has been in a room with that many kids for that long and she was scared, fascinated etc. Time will tell, but I really hope that she doesn't have all of my bashfulness/shyness. Towards the end of the group she was waving bye bye and telling the therapists bye and started touching her chip. I'm sure as time goes on she will be more comfortable as the newness wears off. It also showed me how important it is for me to start taking her to church with me and allowing her to stay in the nursery and having playdates. She needs that social interaction....before she goes to preschool at age 3 (whew....I still have another year to prepare myself for that day!) The last area is of course her heart health. She had an echo back in March and at that time everything was stable and we follow up on July 1st with another echo. She will either have another cath at the end of the summer or during the fall, depending on how her echo looks. The heart cath will give us an idea of when her next open heart surgery needs to be. Praying for a few more years on that issue! :) So far, she doesn't show any outward signs of any complications. She has as much energy as the next toddler, so much so that she has pretty much given up taking naps unless she isn't feeling well or she was up way past her bedtime the night before. As for the DiGeorge Syndrome......we still aren't sure how much of her delays are from a 6 month hospitalization or from the syndrome. Most everyone thinks the hospitalization is the culprit since she is advancing and catching up on her own. Each day she shows me in some way that her cognitive skills are pretty close to target and she also catches on to things pretty quick. I think at her last eval she was 5% behind mentally? I may have that wrong, but it was so low it wasn't anything to worry about. Pretty good considering her brain didn't have adequate oxygenation until she was 6 months old :) I know that was a lot to read, but there's a lot going on with my sweet pea! She is SO much fun these days or either I am still a kid at heart. I love curling up on the couch and watching Elmo or some other show with her, playing baby dolls, reading books, taking her around the neighborhood or to the zoo etc. She is definitely an outdoors type of girl......loves loves loves to be outside. She also likes to accompany me when I go shopping. She recently discovered the shopping carts at grocery stores that have the little cars on the front....she likes those but I have to be careful and not pull too close to an aisle....haha learned that the hard way one day ;) As always, please remember her in your prayers. Things to specifically pray for for those of you that like specifics: 1. Her heart will remain strong and her pulmonary arteries open and growing 2. That her oral feedings will increase to the point that we can start to decrease the amount of pediasure I give her by syringe 3. That her muscles will continue to strengthen and she will be walking everywhere solo 4. That her speech will continue to improve. I think that is all of the major stuff for now. I do appreciate all of the questions, comments, and concern for MJ. It really does mean a lot to me and I am so excited to see how God is going to use Macy Jane's life...it is quite obvious that she was put on this earth for a specific reason. (besides being my pride and joy!) I love my life as a mommy and each day that I hear her wake up and say Mama just melts my heart and instantly lifts my spirits : )

Wednesday, March 18, 2009

Tuesday, March 18, 2008
MJs first birthday Current mood: nostalgic
I think, after much research and debate, that I have selected the theme for MJs birthday party. There are 2 designs of the theme that I am still debating over....but there is plenty of time to finalize my decision. I dare not say on here just yet what I am doing because that person that just loves to copy me may be lurking about and once again snatch my idea.....not going to happen just yet It’s sad that it has to be this way, but I am stubborn and tired of being copied. Haha.
I really can’t believe that in a little over 2 months Macy Jane is going to be ONE!! This time last year, we were not even sure that she would live past being a newborn. God has blessed me and my family so much and I give Him all of the credit....glory....etc. Macy Jane is such a miracle and she is going to have a birthday party fit for a queen......or a spoiled one year old If anyone deserves it, my sweet little girl does. I thank God for allowing me to be her mommy and look forward to all of the days ahead that she blesses my life.