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