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. 

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! 

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!!!

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.

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.

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

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.

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 : )

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.

On this date exactly one year ago, Macy Jane was discharged from Lucille Packard Children's Hospital in Palo Alto. After 6 months in the hospital, I was finally able to bring our beautiful daughter HOME! A place/occurance that many long days and nights I thought would not ever happen. I cannot put in to words the feelings that I felt that night as I was finally able to hold my daughter without having someone's permission, change a diaper and actually throw it away right then, and snuggle with her in a real bed. She was finally all mine to take back to the Ronald McDonald House in preparation for our return flight to Memphis!! I openly admit that I was terrified of what to expect and do. At that point, I did not know what Macy Jane liked or what soothed her. She never really had the energy to play before and honestly she never really cried that much in the hospital. Now I was responsible for this little one 24/7. It is amazing to see how much Macy Jane has changed over the past year. Early this morning, I looked back at her past year in pictures and just cried. God has been so good to me and our family and my heart is overjoyed and in awe of all of His blessings. Who am I to deserve such a precious little girl that blesses my heart every day and always brings a smile to my face, even on the worst of days. I am so undeserving of such a beautiful gift, but am so thankful to God that He chose this little girl specifically for me. I could not imagine one single day without her and believe me, that thought crossed my mind daily for a long long time. While I am giving thanks, I might as well mention my awesome extended family! Today, we all went to my cousin's house in Dyersburg to celebrate together. This is the first year that the family has gotten together for Thanksgiving in several years (we always do Christmas), since Grandma Haggard passed. It's so nice to be close to family and be able to always count on excellent food and tons of laughter and conversation. Anyone that knows my fam knows that we are very open and no topic is barred from conversation, whether good or bad ,inappropriate for table talk or not, and that always makes our gatherings quite interesting. Two people that more than deserve mentioning are my parents. I do not think that I have met 2 people that were more made for each other and have such big hearts. They have helped me so much, especially in the last 18 months. There wasn't a day from the time MJ was born until the day we flew home to Memphis from California that one of parents wasn't with me and MJ. When she was at Lebonheur those 3 months, I could count on my dad coming to see us every night when he got off work and on the weekend and he always provided me with dinner unless someone else may have brought something. Mom would stay with me during the day to help pass the time or stay with MJ for a few hours when I needed those rare breaks from the hospital to destress. That very reason is why I am 100% comfortable with leaving Macy Jane with my parents at any time. They know how to care for her and her needs almost if not the same as I do. Mom watches MJ for me while I work and on those days where I need a few hours to myself. Not everyone has the priviledge of having their parents/grandparents to help them out and I'm very thankful that my parents are able to.My sister, Dee, well I don't even know how to describe her and our relationship. We have always been more close than me and my brother, probably because we have more in common. She is one of my best friends and someone that I could call no matter what time it was/is and talk to her about anything and know that she was always going to give me great Christian advice. She immediately flew home to be with me after I had my amniocentesis and was put on bedrest. As soon as the doctor told me something wasn't right, he left the room and gave me and Steve time to process the information. My first reaction was to tell Steve to get my parents on the phone and call my sister and ask her to please come to Memphis. I am typically a strong person, but the news that my child would be gravely ill almost sent me to a breaking point and I knew to get through that, I needed my family around me to help me. And help me they did. Dee took vacation from her job and was on a flight the next am. She continued to come home to be with me at various doctor's appointments, especially our first 4-d ultrasound where they checked MJ for a cleft lip. When MJ was born she was there and returned for weekly visits often. She flew to CA for Mj's first surgery and came back to celebrate Thanksgiving with us in CA. That doesn't even begin to scratch the surface of all that she has done for us, especially over the past year! There isn't a day that goes by that we do not communicate in some form. I am a lucky girl to have a sis that I get along with so well. To say thank you just doesn't quite show my gratitude. There are various other things that I am thankful for as well. Such as, I am an American and with that comes many rights and freedoms that people all over the world envy; I have a great job with decent pay; Steve also has a great job; we don't have to worry about how we are going to pay the bills or put groceries on the table and gas in the car; I have everything that I could possibly need; I have a few pretty awesome friends that I know I could count on no matter the situation; I finally found a great church to attend; and I have a husband and family that care about me. There isn't one thing in this world that I could even think of that I absolutely needed. How many people can say that, even in America? Many times, I take things for granted but I am glad that this day rolls around each year so that my thoughts and actions can be redirected in the right way. So, now that I have explained all of the blessings in my life, I have been thinking about ways that I can give back and perhaps help people that are in true need of it. One of the ways that I know I can help is to contribute to the Ronald McDonald House & Target House in Memphis. I know that when we stayed there in CA, they always needed or welcomed home cooked meals or goodies or just volunteering time. I don't really have lots of free time these days it seems like, but one thing I know that I could do is drop off some treats a few times a month. I am hoping to be able to start doing this sometime after the new year. I just want to give back in some way as my own personal way of saying thank you. So many people out there are in need....it's the least I can do. Well, that about sums it up. I was so happy today as I would think about how we celebrated last Thanksgiving. Steve, my dad, and my siblings flew out to California to join me, mom, and MJ for Thanksgiving. We cooked the meal at the RMH and ate it in Macy Jane's hospital room, with her right there beside us. It broke my heart to send all of them back to Memphis on a flight the next day knowing that we could not join them yet. It was SO worth the wait though. It completely changed who I am and how I think and act and hopefully made me a much less selfish person. Now, I realize all of the wonderful blessings in my life and thank God for every single one of them daily, not just on Thanksgiving. I hope that ya'll had a great Thanksgiving and didn't stuff yourselves til you were sick :) Now....on to Christmas!

I really should be in the bed right now. However, this afternoon I was so tired and my head was killing me that I decided to take a nap. My one hour nap turned in to a 4 hour nap. The alarm apparently was going off and I was aware of it because my phone was buried up underneath me. Don't worry (Dee), MJ wasn't roaming the house unsupervised...my mom offered to watch MJ so I could rest. Needless to say, if I take any kind of nap it screws me over at night. I won't sleep for a while yet. Oh-well. It is quiet, I'm the only one awake and its my only time during the day usually to unwind, straighten the house, and watch a little tv BY MYSELF. I have a myspace page as well that I used to blog on all of the time, especially the past 2 years. It was sort of like therapy for me. I prefer facebook these days for whatever reason. I miss blogging though so you may start seeing more notes from me. Most of the time, they are just me venting about something or ranting and raving over something, doing a random pointless survey, or killing time. (like tonight!) I don't expect or care if you read all of my notes. They are beneficial for me : ) Today I had to go to my ACLS class. I always dread these for some reason. Perhaps it is the very bad actors on the very long videos, the sitting in a classroom for 8 hours listening to a nurse teach you that you don't really care for, or the thought that what you are taught is pretty much not done in the ICU code setting. Who knows. Its a requirement for me if I want to be a float charge nurse or be a part of the MRT program so I suck it up every two years so I can continue on my merry way. One thing I was thinking about during the class was CPR outside of the hospital setting. I'm not one of the people that carries emergency resuscitation supplies with me. If I were say at Target and someone collapsed, would I do mouth to mouth? Yuck. Probably not? Not on a stranger. However, if it were my close friends and family I would in a heartbeat. Does that make me a horrible person? Thankfully, the new guidelines emphasize chest compressions without the rescue breaths (outside hospital setting etc) so my conscience will be clear if I ever encounter my "Annie" in the store. I am so excited about tomorrow and the next 5 days. I am going to drive to Knoxville to see one of my best friends, Sarah. We have some fun activities planned for our bambinos (she has a little boy Flynn, that is a few months younger than MJ....they have a prearranged wedding in about 20 years) such as a pumpkin patch etc. Hopefully I will get some decent pictures to post! We will hopefully have time to go to Pigeon Forge and Gatlinburg to do some Christmas shopping as well...I love it up there at this time of year, it is so pretty with the leaves changing colors and the cool crisp air. I've gotta go to the UT bookstore as well and get some Lady Volunteers stuff for me and my sis. We are big fans of the Lady Vols basketball team. I can't wait for the season to start up!!! Macy Jane still has a snotty nose and a cough, but shes back to her old self playing non stop and making every musical toy go off continuously and at the same time. She is doing ok with sleeping in her own bed all night. She slept with me in the guest room a few nights at the beginning of the week because she was so sick, but the past few nights she's slept in her bed all night, only waking up twice, but putting herself back to sleep after a few whimpers. She really is such a good baby. Even when she is sick and puking, she is still so sweet and loving....doesn't cry too much! Just like her mommy ; ) (dont choke)Oh yeah! Speaking of MJ. This was actually my point in writing tonight, I almost forgot it!! Macy Jane has been going to speech therapy, occupational therapy, and physical therapy on Tuesday & Thursday each week at Methodist North. She hates it for whatever reason. I don't know if it is because she knows it is a hospital, because they make her do things she doesn't want to, its outside her normal environment, or a combo of all 3 and then some. She usually screams and cries. We really wanted her in LeBonheur's LEAD program, but they were full and had a massive waiting list. Thankfully, our early interventionist was able to pull some strings and got Macy Jane speech therapy through LEAD. The best news is that they come to our house!! The first meeting was Wednesday. The lady walked in our door, took her shoes off, and immediately got down in the floor and was bubbly and cheerful. She acted like she had known us for years and we were best friends. This approach helped MJ so much. Macy Jane almost immediately crawled right to her and reached her arms out for Jennifer to pick her up! I was shocked. Happy, but shocked. She asked me a zillion questions about MJ and said she knew the perfect plan for Macy Jane. Plan? A therapist with a plan and goals? I was shocked. At North, they all pretty much just play with her and that really aggravated me. I understand play therapy is important, but the speech therapy was not addressing Macy Janes feeding issues at all, which is one of her biggest problems. They were more focused on her language skills and sign language. But, we had to do what we had to do at the time. Anyways, MJ's oral feeding aversion goes way beyond just not knowing that food is supposed to fill you up. It has to do with sensory issues mostly. Apparently there is a feeding program called SOS that starts at the very beginning of the eating process. Most people think eating consists of getting the food in your mouth, chewing, and swallowing. In kids like MJ it is a big huge 30+ something sensory process. This program starts at the beginning which is the smell of food and the sight of food. I made a list of the foods that MJ does tolerate on her plate and will taste. They were all pretty much neutral in color, with the exception of sweet potatoes & Cheese Puffs, and had smooth textures. The first step is to get Macy Jane to be comfortable with several different colors on her plate and different textures. Comfortable meaning she an tolerate them being on her plate without her immediately either ignoring it or throwing it on the floor. I know it sounds crazy, but its true. If she sees something like ham or turkey for instance, she will take her index finger and barely touch it, then make a god awful face and throw it on the floor. Interesting to me and baffling all at the same time.I am completely having to change MJ's feeding routine to start this new program. She typically eats by feeding pump through her g-tube at 10am, 4pm, 10pm, and 4am over a ten-twenty minute time period and does this while playing, sleeping, riding in the car, etc. Now, I have to sit her in her highchair at least 3 times a day at normal meal times. The first ten minutes, I am supposed to put a different variety of foods on her tray and play with them with her, and slowly add new foods, colors, textures. The next ten minutes, I am supposed to start her tube feedings. The goal is that she will start to associate highchair with food and mealtime and her belly getting full all while watching me eat. (that's not a problem ;) Because of this, I am changing the hours that I work so that the majority of the time I can be there for MJ's meals and really get started on this aspect until it is a normal routine for MJ and my mom can do it when I'm not here. For some reason, this is one thing that I would love to see MJ conquer. It doesn't embarass me that she has a g-tube or that she can't eat like most kids. Most people stare at me in the store when she is receiving a feeding and I just smile and keep walking. A few people have come up to me and asked me about it, which is what I would prefer rather than them gawking at her. it isn't about me, its about MJ. I know that once she is school age it would benefit her greatly to not have something for kids to make fun of her for or for her to even have to worry about being different than everyone else. Kids are mean these days and I can't protect her from everything and will not try to, but this is something that I can do to help her. If it means me losing sleep, working crazy hours, or having to give up some of my pleasures so I can be with her, I'll do it in a heartbeat. Keep your fingers crossed that this new program will work. It isn't an overnight solution to her aversion. Our goal, according to the ST, is for MJ to be eating 100% orally by the age of 3 and to be caught up with her language skills by the age of 4. Lots of work ahead of us, but I love a good challenge and will do my best to help her! I guess this note turned out to be a novel, which happens quite frequently. If you read the whole thing, kudos to you :) I hope that everyone has a great weekend. Much Love, Bethany Jane

A New Day Has Come
I started to write this note on Monday night as I sat at Macy Jane's bedside, but mommy duties took over and I decided to write when nothing was going on. I'm not sure if you are familiar with the Celine Dion song below, but all day Monday this song kept popping in to my head. I was waiting for so longFor a miracle to comeEveryone told me to be strongHold on and don't shed a tearThrough the darkness and good timesI knew I'd make it throughAnd the world thought I'd had it allBut I was waiting for youHush now I see a light in the skyOh it's almost blinding meI can't believe I've been touched by an angel with loveLet the rain come down and wash away my tearsLet it fill my soul and drown my fearsLet it shatter the walls for a new sunA new day has comeWhen it was dark now there's lightWhere there was pain now's there's joyWhere there was weakness I found my strengthAll in the eyes of a boy (change to girl :) Hush now I see a light in your eyesAll in the eyes of a boy (girl)I can't believe I've been touched by an angel with love Hush nowI cannot begin to describe to you the feelings that I had and still have since Monday. For those of you that may not have gotten the message from me or through the grapevine I will update you!! I received a call over a week ago from MJ's cardiologist. Apparently, the cardiology group at LeBonheur met on Wednesday and discussed Macy Jane's history/future/surgery. The new surgeon in town advised the group that a heart cath would be more beneficial for Macy Jane and would buy her more time so that she could be older, bigger, and stronger for her next surgery. I got the call to be at LeBonheur at 0630 this past Monday morning. To say that I was shocked would be an understatement. We were told back in July/August that a heart cath to place a stent in the conduit would not work and that open heart surgery was our only option and it needed to be done before flu season got in full swing. For the past few weeks, I had been trying to prepare myself as much as I could for all of the possibilities and outcomes of the surgery. I was ready. My bags were packed to stay at the hospital for weeks, if that is what I had to do for my little girl. The days before her procedure, I had such a peaceful feeling inside of me that I cannot describe. Most people have asked me how it is that I have and can handle all of the events of the past 2 years. Without a doubt, it is my faith in Christ that has brought me through each and every situation. I know that He is the one that comforts me and calms me down when nothing else can. Yes, handing my child over to someone and knowing that that could be the last time that I see her alive is very hard. On the other hand, I know that if she does not return to my arms after the procedure, she has been taken to the arms of Jesus, and His arms are much better than mine. On Monday, we finally got the call around 4 that the cath was finished. Macy Jane would be going to the ICU on the ventilator with a large IV in her leg. The doctor would talk with us later because he was at Macy Jane's bedside. Immediately, I began to think that the cath was not successful and that she would be going to the OR on Tuesday as originally planned. Dr. Lutterman came and found us in the waiting room and told us to come to her bedside for a chat. I was shocked when I walked in her room. There was my sweet baby laying in her crib...with no breathing tube down her throat, sucking on her pacifier, waving when she saw me, and crying if the nurse stopped patting MJs butt (that is classic Macy Jane....wanting to have her butt patted when she doesn't feel 100%) Dr. Lutterman was gracious enough to sit down with us and show us the films of MJs heart cath. It wasn't until about half way through the meeting that he finally told us that the cath was more successful than they thought it would be and that surgery had been cancelled, and we would be going home in the am! All I could do was thank God that He had His hand of protection on Macy Jane's life once again and for sparing her another surgery so close to the others. During the cath, they were able to place a Gortex covered stent in her conduit and open it to its original size, balloon some narrowed areas of her pulmonary arteries, and repair a psuedo-aneurysm in the right ventricle (not something that we knew was there until this heart cath). We were chatting with the doc about how noone gave us hope for Macy Jane in the beginning. Some thought we should take her home to pass, while others thought we should at least give her a chance at life. I carried her for 38 weeks and 5 days. Out of those weeks, I knew about MJ having complications the last 19 weeks. If I didn't want to give her a chance at life, I would have aborted her when we received the amniocentesis report. Like I said earlier, God chose Macy Jane specifically for me and who was I to decide that she didn't deserve life. Dr. Lutterman showed us the heart cath images from Mjs first cath in May 2007 compared to today. It was completely unbelieveable to me to see where she has come from in the past 16 months! You cannot tell me that there isn't a God that performs miracles. I am priviledged to be the mommy of a miracle every day and I would not trade my daughter for all of the "perfect" little girls in the world. She is trully the light of my life and my purpose at this point in my life. Since we came home, I feel like I am in a dream. Since the spring, I have had the black cloud of surgery looming over my head. Now, that cloud is gone! Yes, she will eventually have to have another surgery...maybe even a couple, but it could be years before that happens. For the first time since I was pregnant, I do not have that constant fear in the back of my mind of what's next or what could happen. I am choosing to live each day to the fullest and enjoying every possible minute that I can with MJ. The future plan for Macy Jane is this. She will have another echocardiogram in November at her follow up appointment and another heart cath towards the end of winter/the beginning of spring. The goal from this point on is to balloon the distal parts of her pulmonary arteries that up until now have not been ballooned due to inaccessability. The hope in doing this is that it will continue to drop the pressure in her right ventricle. Please continue to remember her in your prayers. She is living proof that prayers do indeed still get heard and answered. I will make a list of specific things to pray for for those of you that have asked me for that:1. That MJ would not get sick this winter with any respiratory infections.2. That MJ's heart would continue to pump effectively and that the pressure would remain at a tolerable level.3. For MJ to begin to transition more from tube feedings to oral feedings.4. For her overall development, she is catching up but is still considered behind. Hopefully I can upload some new photos of her from the past few weeks. I had to trim her hair a couple of inches a few days ago and now she definately doesn't look like a baby. She is turning in to such a pretty little toddler :) That's it for now, it is way past my bedtime. I am trying to get MJ to where she will sleep all night in her bed without these crying spells several times a night. If she so much as whimpers I wake up (baby monitor) and usually she doesn't go back to sleep unless I get up and pat her butt. However, 16 months later.....that is getting pretty old and I would really like to start sleeping through the night myself. Last night was the first night of the "cry it out" routine and she did pretty good. She woke up at 0530 screaming, but I let her whine for a few minutes and she put herself back to sleep. It's funny how my heart was racing the entire time and I felt sick to my stomach, but when there was silence, I was proud of her for going back to sleep on her own. She did the same thing during her nap today, so I'm hoping that a few more nights of this and she will sleep through the night. My fingers are crossed anyways :) I hope that everyone is doing well and I apologize if this is a repeat of info for some of you!!

Thursday, October 09, 2008
Quickie
A short and sweet update for everyone. Last Thursday, I received a call from MJ's cardiologist. He informed me that all of the cardiologists/surgeons at LeBonheur met the day before and decided that they were going to try to do a heart catheterization on Monday to see if they could open up the conduit and get good enough results with that to lower the pressures in the right ventricle. I was shocked as we were told this was not an option a few months ago...hence the open heart surgery scheduled for Tuesday. Of course we decided to go for it.
On Monday, MJ had another heart cath. During this cath, they were able to open up her conduit to its original size with a gortex covered stent. They also found that she had a pseudo-aneurysm in her right ventricle. They were able to repair that with something that I can't remember the name of right now. The pressures dropped to an acceptable level in the right ventricle so surgery was cancelled! Praise the Lord. Now, she will continue to have heart caths to open up the narrowed areas farther out in her arteries, more towards her lungs. They haven't been able to reach them yet because of the small conduit, but now that problem is fixed so we can begin therapy on the distal arteries, which hopefully will drop her pressures even more. Now, it could be 6 months to a few years before her next surgery. YAY!
We spent Monday night in the CVICU just so that she could be watched and she did great. She finally went to bed around 11pm and slept til 7. Pretty good considering narcotics usually make her wired. Shes done great since being home!! I still can't believe that we are at home and not at the hospital. I keep thinking I am dreaming and about to wake up. Oh how I dreaded surgery this close to the holidays and the delay it would cause in her development. She has come so far! She likes to stand up now, which is a huge blessing considering this is the girl that a few months ago would not put any weight on her feet. Now, we are trying to get the rest of her teeth in....she now has 12 teeth....in 4 months time. She hasn't been gaining very much weight lately because she gets really sick each time she cuts a tooth. She isn't losing though and isn't too far off of the 50th percentile.
I pretty much blocked the month of October off because of MJs surgery, but now that we can live normally I can't wait for the holidays. We are going to hopefully be able to make out trip to Knoxville in a few weeks so that we can go to the pumpkin patch with one of my best friends and her baby and then we are definately taking MJ to the Memphis Zoo Boo. I am still looking for her Halloween costume as well. I know what I want her to be, I'm just looking for the one I like :)
Well, that is all for now. I still have family in town until the weekend so I better get to bed so I can spend time with them!! Thanks for the prayers...they are working and it is amazing to see God's hand on Macy Jane's life.
Much Love,
Bethany

Wednesday, September 24, 2008
It’s been so long! Current mood: breezy
Wow, it has been a very long time since I have updated. I'm not even sure where to begin!
Macy Jane is doing very well. Each day she getting stronger, learning new things, and doing new things. She has been crawling like a big girl for a while now (instead of the army crawl!) and most recently she has been getting in to the kneeling position and pulling her self up on the furniture!! She has been involved in physical, speech, and occupational therapy for about a month and a half now. As I type this, she is crawling over to the end table and grabbing books off of it and "eating" them She loves books and being read to. She has also started to eat more things by mouth. She's still fed primarily by the g-tube, but one day we will get there.
The biggest news is that Macy Jane has to have another surgery. Soon. Like October 7th soon. It isn't because of a life threatening emergency situation. It's something that we knew would happen, just didn't know that it would happen this soon! She is going to have her conduit changed out via open heart surgery. We had the consultation with the surgeon last week and he said that if everything goes well with no complications, she should be in the hospital for a week. Please remember us in your prayers. It does not get any easier as she gets older. If anything, I am dreading this surgery more than the past two because we know what to expect this time around on top of the fact that MJ is older and definately a lot more strong. *sigh*
Everything else is going ok. I redecorated my living room and guest bath this past weekend. Kirkland's was having a massive sale and I got some things that I've had my eye on for a few weeks. When we bought our house, I bought 4 pictures for the living room just to put something on the walls until I found something I loved. Well, it's been almost 3 years and I finally finished it.
Life has been super busy for us. My brother came to live with us at the beginning of August. The doctors thought that he had lymphoma, but after a biopsy was performed it was determined that he does not have cancer after all! He went back to Missouri this morning. If it had been cancer, he was going to stay with us so that we could take care of him. I'm so thankful to God that he is cancer free MJ has therapy on Tuesday and Thursday and a lady comes to our house on Fridays for an hour to do some play therapy with MJ in the home environment and help us as parents with resources in the community etc. On top of that we both work full time and I am trying to work extra days to make up for the time that I take off with MJ's surgery. However, staying busy helps me de-stress.
Well, I guess that is all for now. I hope that ya'll are well.
Much Love,
Bethany

Friday, July 25, 2008
A brief update on Miss Priss Current mood: adventurous
We finally got the phone call from Macy Jane's cardiologist last Saturday night! MJ's conduit that was narrowed in April and restretched has once again become narrowed. She also has a few places in the distal parts of her pulmonary arteries that are narrowed again. The great news is that her heart's pumping capabilities is still excellent! We knew that the conduit would probably be narrowed again, it's just the nature of the beast with these things. However, towards the end of the conversation, Dr. Joshi informed me that Lebonheur recruited a world famous top-notch heart surgeon to join the staff in September. He told me that and told me that he highly recommends us having her next heart surgery right here in Memphis. The conduit change out, eventhough it is through open heart surgery, is a pretty common surgery...unlike her first operations, the Unifocalization. I told him that we have trusted his judgement calls from day one and if he could tell me that if it were his child he would let the new doctor operate on, then we would feel comfortable.
We have not made our minds up 100%, I would of course want to meet the new surgeon, and hopefully be able to talk with him. However, the flip side is this. We would have all of our support systems in Memphis and around the area, Steve wouldn't have to miss any work, I could work if I had to, we wouldn't have to deal with the strange culture of California, and basically it just boils down to this. Besides the fact that it is easier on us as MJ's parents, the most important thing is that I KNOW beyond a shadow of doubt that MJ would receive excellent care post-op at LeBonheur.
Most of you, if you read my blogs or talked with me in California, know that we had a terrible time with the way that MJ was cared for after her open heart surgeries in California. We had a handful of nurses that we grew attached to and one doctor besides Dr. Hanley that we liked and trusted. That isn't so great considering how many doctors and nurses took care of MJ. However, with the exception of a few nurses at LeBonheur, we have always liked and trusted the staff there. I know that when MJ comes out of the OR, Dr. Cabrera will take care of her like she were his own. I also know that the CVICU nurses and 7-west nurses are excellent. I have more peace about them taking care of my child than people across the country that are there for their $$ (some not all!)
I have been so busy since I talked with Dr. Joshi that I haven't researched this new doctor. The other option, which is still being discussed, is whether or not her conduit can be stented open during a heart cath. Dr. Joshi is discussing that with the heart cath docs next week. If so and it works, MJ might not have to have surgery for a year, hopefully. We are praying for that, but know that surgery is also very much an option. Either way, if it is a heart cath, that will be done in August or September, and surgery would be after september if we go that route.
Well, MJ is getting cranky so I am going to put her down. I will update on some more stuff later as time is available. Me, my mom, and MJ drove to Florida yesterday to help my sister and brother in law move into their first house. I will do anything to get back to Florida.....even if it involves moving
Please keep us and MJ's doctors in your prayers as we have dicisions to make. As always, we appreciate that. OH! MJ has been sitting up on her own for months now, but hasn't been able to go from laying down to sitting up by herself. However, over the past few days she has been sitting herself up! YAY!!!! Huge answer to prayer. She is also taking bites of food now....not huge amounts, but at least it is something!!!! She is crawling everywhere and in toeverything. She also starts therapy in2 weeks and we hope she will be walking by Christmas. I have my fingers crossed that that is a realistic goal Things have been going so well for her lately, I only pray that they continue that way!!
Much Love,
Bethany

Thursday, July 17, 2008
Just to clear some things up...... Current mood: lazy
It was brought to my attention today that my status updates on here seem to be directed at certain people on my friend's list. I would just like to clear that up. My status updates are not about people on here, unless I specifically state your name. If I have something not so nice to say about one of my friends on here, I wouldn't be stupid enough to post something so that that person could see it. (I will just tell Steve about it, ) If I post an update about something and you think that I am referring to you, odds are I am not. Contrary to what some may think, I don't look at every one of my friends page daily, weekly, or even monthly. It is pure coincidence if I say something that you feel is attacking you.
THAT'S all I am saying about that!
Today has been pretty lazy daisy. Both MJ and I slept off and on in the guest room together (I love having her as a snuggle bunny every once in a while!!) and then we spent the afternoon on the couch watching tv and sleeping. Steve took over for me while I ran to wal-greens for some meds and grabbed us some dinner. However, I think that Steve is catching what I have. I sound like I swallowed a bullfrog (croaking when I talk) and now he is starting to sound like that. I hope I am better by Friday so I can go to work!
Macy Jane is hanging in there. I am not sure what teeth she is cutting now, but she is in the middle of her throw-up marathon, which means there are some teeth somewhere in that mouth making their way to the surface. I think that I would almost rather her have diarrhea than this throwing up stuff. She is drooling like a bulldog and it is so thick.....which is what I think is making her sick to her tummy. However, she is sleeping really well next to me right now so maybe today was the last day. It was day 3 of it and it usually doesn't last more than 4. She is normally all over the place and doesn't want to be held a lot but today she didn't want to be put down. Good for me though because I get to hold her like she's a newborn...haha.
I called Dr. Joshi's office today for the MRI results. I didn't hear back from them, but hopefully no news is good news and he will call tomorrow telling me that she looks great and doesn't need any surgery or tests for 6 months. OH HOW NICE THAT WOULD BE! I am praying hard for those words.
Well, I need to get my butt in the bed in case MJ wakes up super early wanting to start the day. I hope that everyone is doing ok and enjoying their summer!!!!
Much Love,
Bethany

Wednesday, July 16, 2008
My little one is not a baby anymore.... Current mood: chipper
I think today I finally realized that Macy Jane is not a baby anymore, she is now a toddler. The past 13 months has flown by, even though the first 6 months seemed SO long when actually going through them. Today, we put her carseat in the forward facing position, which officially means that she is a big girl now. She's been over twenty pounds since her birthday in May, but I wanted to make sure with her pediatrician that it was ok to change it.
Speaking of which, today was her checkup. It was during her checkup that I realized that she isn't a baby. Every doctor's visit up until now she hasn't minded if doctor's take the stethescope out and listen, or shine that big light in her ears, or stick that wooden thing down her throat. However, today she screamed bloody murder at all of the above. YAY. Not only did we scream, but we threw everything around us in the floor. On purpose. A temper tantrum?! From my sweet little MJ? Absolutely. Even her cry is different. It is so "big girlish" sounding. She is also just lots of fun these days. It seems like she is a sponge soaking up every noise, light, object, etc. She trully doesn't miss much!
She has now graduated to GoodStart 2! Yippee for her. Even bigger news, she ate 3 or 4 bites of mashed potatoes the other night!!!!! Like she actually kept them on her tongue and swallowed them. NOTHING was on her chin or her shirt. GO MJ! We have been working very hard with her daily trying to get her to eat. I think she is more receptive now to things with tastes and textures being in her mouth than ever before. You parents out there that can just pop a bottle in to your babies mouths or a spoon of food don't know how fortunate you are I would give my right arm if MJ would like to eat orally. I know that she will eventually get there and I will be there every step of the way cheering her on.
Her hair has become quite the challenge lately. I need to just cut the back of it to get the frizzy ends off of it. The front is bizarre as well. I am trying to grow it all out so that it will be one length but her bangs are always in her eyes. She's always had enough hair for hairbows, but for the past few months she takes them out and eats them or throws them down. I tricked her and put the bow on the opposite side but after a few days she got smart to me. However, I guess I should be grateful that she has a head full of hair and isn't bald!!! Also, I would like to know what color it is finally going to be. There is one patch that is really blonde, then the rest of it still has a red tint to it and then on the top it is really red. At what point is it all going to blend?! I think she will always have a little red in her hair, at least I hope she does.
Steve and I went to Wal-Mart after MJ's appointment for our grocery run. It was actually pretty enjoyable! I think it is the first time that we all three had ever been to wal-mart. However, by the time we made it to the grocery side I made an interesting discovery. I asked Steve if he thought that we would be the type of parents that let our child get a toy every time she went to the store with us. He looked at me and laughed because in our buggy was a giant ball that Steve wants to teach her to roll to him, a smaller ball that she can actually pick up and throw, and a few other little toys. God help us! She doesn't even ask for them yet and we buy them. Oh-well......we have fun doing that sort of stuff for her and with her. Something I thought was funny. We went down the aisle with deoderants on it and I had her stroller a little close to the shelf. I wasn't paying attention and before I knew it I heard some grunting and the stinker was halfway out of the stroller picking up a can of aersol deoderant. Silly girl. One of these days she is going to pick up something and I am not going to notice it until the security people at the door ask me about it. It was the child......honest!
Well, me and mom and MJ (and maybe my brother) will be headed back to Florida next week for about a week. My sister bought the house and they close on Friday!!! We are going down to help them move and get things settled in. That should be a lot of fun. I wanted Steve to go but there are 3 shifts that he can work extra so he chose to stay here. The money will be nice I guess.....to send to bills. Bleh!
Well, it is almost midnight and I don't feel well. I have a sore throat and just feel lowsy. I think MJ has something as well because not only is she teething but she also has a snotty nose and her eyes are watery looking. Please say a prayer that we will be better tomorrow!!! No more doctors and hospitals please!!!
Much Love,
Bethany

Friday, July 11, 2008
Macy Jane’s MRI Current mood: tired
We are finally back at home....safe and sound. My Miracle Baby is sleeping soundly in her bed......so peaceful It has been a long day of sitting and waiting, but things went okay. Macy Jane has at least 30 puncture marks in her arms, legs, and neck. From what you may ask? IV starts! 30 freaking times!!!! I was so shocked when I saw her poor pin cushion of a body. I think 30 times is a bit rediculous, especially since she hasn't been stuck for an IV since her heart cath in April, where they got the IV on the first attempt?! And before that, she was stuck for labs one time since December. It was so many needle sticks that Dr. Joshi gave her a dose of IV antibiotics just to cover her. Thankfully, her reflux has gotten so much better that they were able to put her to sleep with the gas before they stuck her. She has no idea what happened to her. Also, they used Diprivan to sedate her instead of narcotics...thank you thank you thank you! She won't be high all night long now! When she has narcotics she doesn't sleep for what seems like days. Anyways.....
Dr. Joshi made a special trip to see us after the MRI was over. He gave us a preliminary result based off of a few pictures that he saw. However, he had over 3,000 different pictures to look at between now and Monday before we get the official word. So basically I am saying that what we were told today may change on Monday or more stuff will be added. Whew. Her heart function appears to be good, as in it is able to pump the blood efficiently to her body/organs. He also said that her conduit appeared to be okay, not narrowed, from the one angle that he saw it, but he would have to check the proximal images. Her right ventricle is still dilated, but he said that is 100% expected and normal for her diagnosis because she does not have a pulmonary valve yet. So, that part is all pretty good news. We were kind of shocked because he mentioned that this MRI may show us that she needs another heart cath, open heart, or nothing at all. We thought this MRI was to tell us how soon we were going to California and didn't think there were any other options. How wonderful it would be to hear news that she wouldnt have to undergo any more procedures for a while?! We are all praying earnestly for that. She has come so far developmentally and is actually eating a little bit by mouth and if she has surgery it will be steps backwards. However, we are not getting our hopes up. Whatever happens is God's will, no matter what.
Once again, I was reminded today of what an awesome little girl that I am so blessed with. (We are blessed with ) God has blessed us more than our share and I can't wait to see how He is going to use MJ. It is quite obvious to me that God had a specific plan for her life because we have almost lost her many times and technically she shouldn't be here based on her diagnosis. I am so undeserving but I am thankful that I am able to see our beautiful daughter everyday. She lights up my world and if I am ever feeling blue she is always able to cheer me up by smiling that beautiful smile or waving at me. Gosh....I love her! What a tough little girl she really is. To have been through so much and to be so happy.....still. I am trully amazed.
Well, MJ was intubated twice (put a breathing tube down her throat) because the first tube was too small. Because of that they gave her steriods to help with the swelling in her airway. Thankfully she seems to be fine. We will of course watch her closely tonight, but she played all afternoon like nothing happened. If you think of her, please say a prayer that she will sleep well tonight. Thats what she needs the most!
I am going to be busy for the next few days. I work tomorrow and Saturday, have church on Sunday (we are trying to find a new one.....always stressful for me!), work Monday, MJ has her pediatrician appointment on Tuesday. Finally on Wednesday I think I will take a break and enjoy life That is unless something else comes up!
Well, I am going to get things ready for work tomorrow. I hope everyone is doing well and thanks to those of you who prayed for us. Keep it up!
Much Love,
Bethany Jane