Hello again...it's been awhile.

So hello again! I know, I know...I am horrible about updating this blog. My mid-new years resolution, to keep this site updated a little more frequently. So here's a little about what's been going on. I will try to make this as short as possible, but than again...it has been awhile.
Brooklynn has been doing so fantastic! - for the most part. Yes, she is still predominantly tube fed, but her feeding has improved so much! She was approved during her last swallow study the beginning of January for trial portions (about an ounce in the morning and an ounce at night) of stage 2 baby food. She has been doing so well, we have slowly "up'ed" the amount of baby food she is getting - with the knowledge that if we hear any congestion, pnemonia, etc...we stop spoon feeding until she is completely cleared up and then we can begin again slowly. She has gotten a slight cold once or twice in which we discontinued her spoon feedings for 2 or 3 days, but she has never (knock on wood) had pnemonia, etc. She is currently eating 3.5 ounces in the morning, 3.5-5 ounces in the evenings, and occasionally 3.5 ounces during lunchtime. She is doing so great! Her lip closure is good, her swallowing is slow but good, and she is beginning to learn the munching pattern and how to rotary chew. We attempted stage 3 baby foods, but got the typical gagging reflex (that even many typical babies give during stage 3...well...it's gross!) Tomorrow we are going to attempt mashed peas and carrots (real people food!) and creamy mashed potatoes to see how she does. I am so excited! We will be doing this during feeding therapy. We have been slowly introducing dissolveable gerber puffs and yogurt melts. It started rough, but she improves more and more each time! All in all, her feeding is going so well. I definitely see a future with no feeding tube. (Although, I don't think it would be such a horrible thing to keep it in solely for medication purposes for those times when she gets sick. Or for when she's sick and just doesn't feel up to eating, it's great to run pedialyte through to keep her hydrated!) Anyways, feeding = great!
So she's still not what you would consider "mobile" yet. Do I think she's mobile? Oh yeah. She is so much busier than I ever remember Devon being! She always, always, always has to be doing something. She just doesn't sit still. But I will tell you, for this, I am extremely grateful! I love that she wants to see everything, and touch everything, and throw things and make a mess! This is how she learns. These are all "typical" baby movements that most parents try to discourage. You never realize that this is all a part of their learning process and development until you have a child where the learning process is just a little more in depth than that of a "typical" child. So do I encourage banging a spoon on pots and pans? Do I encourage opening and closing (slamming!) the doors on the entertainment system? Do I encourage throwing things in certain directions and making messes? Do I encourage putting everything (that is safe) in her mouth? YES...to all of this! I DO! Exploring is all a part of her learning process. Opening, closing, catching, throwing, banging, textures, etc. This is how she learns. And it's amazing how much I've learned. I remember constantly pulling objects out of Devon's mouth when he was little and trying to discourage him to open and slam doors and banging on things and putting things in his mouth. If only I knew then what I know now. So anyways, Brooklynn continues to go to Physical Therapy at the hospital 2 days a week. Although she can sit up unassisted, she cannot get into the sit up position on her own from lying down. She is learning to sit up on her own, she is learning to reach across her body without losing her balance, she is learning to get into the crawling position, and lastly, she is learning to walk! Her upper body strength is incredible. Although weak through her lower body, her lower body strength has improved so much since she has began (at 3 months old.) Physical therapy is moving slow, but the amount of frustration she shows and not being able to get to where she wants, I know it will all come soon. They are using the treadmill to teach her to walk. She is put into a harness and on a slow speed to force her to put one foot in front of the other. She learns very quickly! She does well at holding herself in the crawling position, and she has stood on her own (did not pull herself up - but was put in that position) holding on to a table with both KAFO's on for about 12 seconds. It was so awesome! At every small acheievement, we clap and cheer her on. I hope one day to see her clap for herself as well as some babies do. We're working on it!
We're also working on blowing kisses! She loves it and laughs when someone blows her a kiss, and we attempt to help her blow kisses, but she hasn't quite gotten the hang of it herself yet. It too, will come. In time. What she DOES do...is actually give kisses! This is new! And I am beyonddddddd thrilled! One of my favorite things. All I have to do is simply ask "Brooklynn, can mommy have a kiss?" And I get one! A big, slobbery, open mouthed kiss. Of course, I ask over and over. And she loves to give them! She is so sweet.
So, Brooklynn in a nutshell....she loves to give kisses, loves Barney but even more so - she has a new profound love for Mickey Mouse Clubhouse and shows enourmous excitement at the site of Mickey on TV, we can't pick a favorite food as she seems to love them all so much and get's so excited to be spoon fed. She currently says "mama" and "uh-uh" - (as in "no") when we ask her a question. She can roll a ball back and forth, but when holding an object - she tends to toss everything behind her. She absolutely LOVES to go swimming in the swimming pool and gets excited at the sight of me pulling her bathing suit out. She also LOVES to go on golf cart rides and walks in her stroller - especially bumpy rides. She laughs anytime we hit a big bump in her stroller. She still loves to pull hair and thinks its funny to bite. (I am currently trying to break her of those two habits.) She loves it when I sing to her. She loves when I sing her Barney "I Love You" or "Mr. Knickerbocker," and she loves songs about rainbows - "Somewhere Over the Rainbow" and her very favorite, "Rainbow Connection." She sleeps great at night and I think I've finally figured out the right amount of Miralax to get her to produce regular bowel movements. YAYYYYY! In the last few weeks, I have only had to administer 2 enemas. I LOVE not having to give her an enema. It is about an hour and a half process getting it all made and ready, administering it, and waiting. So glad to be most of the way through with that!
So I guess this wasn't so short after all. I just have a quick story to share if you can bear it....
So I knew this would be inevitable, and in time, I would run into this. I actually figured it would have happened sooner than it did, but we have been so lucky and blessed, that it actually took almost 17 months to happen. Devon, Brooklynn and I were out shopping at The Avenue here in Peachtree City this past Saturday. I had Brooklynn in her stroller as I usually do. During the colder months, she was usually covered with a blanket, so her differences were not as noticeable. It's summertime, and too hot for a blanket. So of course, like a normal baby, she was simply just strapped into her stroller, paci and puppy in hand. And we were shopping like anyone else would. Of course it was Saturday, so all the stores were pretty busy. We were strolling through American Eagle and had made our way to the back of the store where there is a sitting area with a couple chairs and a table. There was a woman sitting in one chair with a clear visible view of Brooklynn. Her husband was sitting in the other chair - he didn't have the same view as we were kind of positioned behind one of the clothes racks. The woman was looking at Brooklynn (nothing new, everyone does.) Let me start with, I am very used to the stares and questions as it's not every day that people see a 17 month old baby with a full heavy pink brace on her leg and a feeding tube attached to her leading to a bag attached to the stroller. I completely understand that for some, it is an uncomfortable situation and they are at a loss for words. But until that day, it seems that everyone I've encountered have either looked for a quick second and quietly looked away, or they will simply ask questions. Like "What happened to her leg?" or "What is that tube for?" or even "Is she okay?" I am more than happy to tell you why she has a brace and a feeding tube and explain RTS to people. Awareness, right? I have literally spent long periods of time, even more than an hour, talking with perfectly good strangers about Brooklynn's situation. Most people have handled the situation with grace and understanding. After being educated, they usually follow their questions and end our visit with a pleasant comment for example, "but she's so cute!" or "you would never know anything is wrong without her brace and tube attached to her." Or even just a "wow, she's been through a lot!" I've usually had a fairly good experience with strangers and educating them about RTS. Well, not Saturday. The woman in the chair was staring, leaned over to her husband loudly whispering, he goes out of his way to lean far away from his chair and around the clothes rack to stare at Brooklynn himself. After a "LONG" stare, he follows it with looking me straight in the eye with looks of complete and utter "disgust." For the first time, I felt the sting of it. I knew he was thinking "she did that to that baby." I so wanted to say "no, I did not swing her by her legs and break one," "I did not push her down," "no, I do not, and did not take drugs or alcohol while I was pregnant with her." A million things were running through my mind at once during these few short moments of hurt. But let me be clear...it was a VERY few short moments of hurt. All about 10-20 seconds was I hurt by this man and his wife and their loud whispering and glares of disgust. After those few seconds, my hurt and anger turned to sorry. I felt very sorry for this man and his wife who were also shopping with their 2 young (elementary/middle school aged children.) I felt sorry for their ignorance. Sorry for their lack of understanding and compassion. Sorry that because of them, there is a good chance that their children will turn out just like them - as they were there by their side. Sorry that my son Devon had to witness this hideous act of human incompetancy toward his sister whom he adores and will stand up for. And sorry that I know we will come face to face with this man again because we recognized him as a father who's son plays basketball in the same league as Devon. Sorry that he is who he is. Most of all, I am sorry that he will never have the opportunity to know and love someone in his life as beautiful and wonderful as Brooklynn. I know I will come across this from time to time, and it's not okay. But I will do my best to ignore and move on. And like any parent would do, I will do my best to make these awful encounters into a good learning experience for myself, Devon, and the rest of my friends and family.

Sweet Dreams.

Year 1...

I have copied and pasted an email I had sent via the RTS List Serve - to all my RTS family. I know a few of you have opted out of the list serve (to keep your sanity) so I thought I would share on here as well. Also, to thank my family and friends who have been so supportive of us this past year. Thank you all. XOXO

I found myself thinking a lot today and wanted to drop you all a note. I have spent this day reflecting on this past year, and how my world has been completely thrown for a loop. How the lives of my family has been completely changed. I never thought this would be me. I know none of us ever thought we would be in the position that God has put us in. The parent of a differently-abled child. Before Brooklynn was born, I had all intentions on returning to my full time job as the manager of a retail store (Justice - formally Limited Too for those who have girls and know this store). :-) We had her on the waiting list to get into a local daycare (the same one my son went too...yep..there's a waiting list!). We had our lives all planned out. But when Brooklynn came, everything changed. Needless to say, I no longer work due to our hectic schedules and she stays home with me. I was induced a week and a half before my due date because her weight had dropped to the 7th percentile and we werent sure what was wrong. I kind of had an inkling there may be a problem. Then she came, and she stopped breathing. The respiratory team rushed in and she was taken to the NICU and put under an oxygen tent. As soon as I could, I went to visit her in the NICU. I thought a day or two and she'd be home. Then on the 2nd day, they had scheduled her for ultrasounds, a swallow study, and the cardiologist came in to see her. As my husband and I sat there next to her bed, the Neonatologist came to talk to us. In the middle of the conversation, very non-chalant, he mentioned she might have Rubinstein-Taybi
Syndrome. Before the conversation was even finished, my husband had found the RTS website on his blackberry and had shown me the pictures of the children. After reading a little about this and seeing the photos, we KNEW she had RTS. Brooklynn spent 17 days in the NICU before she was sent home - and referred to quite a few doctors post discharge. During those 17 days, there were only about 2-4 hours a day that either my husband or I was not by her bedside. I left a CD player next to her bed with Jewels lullaby's playing 24 hours a day. I cried and cried and cried those 2 weeks. Not because she had RTS, but because I had to continuosly leave the hospital - without my baby. She came home the day after Valentines Day. (The day before Vday, my dog that I have had since I was 13 passed away - a nightmare of a 2 weeks.) Of course - we celebrated Valentines Day with her. We brought her balloons and a bear and dressed her in a Valentines Day outfit. I even decorated her bassinet in the NICU with sticky hearts and the nurses had made her bows. 2 weeks after we were home, we had already been to see her GI doctor, and we were at the childrens hospital having another swallow study and UGI. During the UGI, they discovered malrotation and she was immediately admitted and had surgery just a few short hours later. Needless to say, I was a mess! And thus began our many hospital stays throughout the year. During that surgery, she had a LADD procedure to correct the malrotation, an appendectomy, and her Gtube placed. She was inpatient for 18 days. She was home for 4 weeks before having another emergency admission for choking (aspiration) and had another surgery - a nissen fundo. She again was inpatient for 18 days. She's had a couple more surgeries (left knee reconstruction, laminectomy for a tethered spinal cord, an a steriod injection in her Gtube site for granulation tissue). In between stays, we have had many many many ER visits. She currently see's 11 doctors and 3 therapists. We usually have 1-3 doctors visits a week and she currently goes to PT 2x a week and feeding therapy once a week. And I cannot tell you the amount of progress we have seen! She has finally passed a swallow study for trial portions of honey consistency/pureed foods. And she has been ok'd by her orthopaedic surgeon to begin gait training in therapy as she is finally able to bear weight on her left leg after surgery. She is almost standing on her own and they hope she'll be walking by 18 months. Now having said all of this, my reason for writing this is because after everything we've been through this year, I wouldn't change a thing! Of course I wished she didn't have to deal with the things she has to deal with. I wish I could make all this easier for her and my family - especially my son who has taken this so well and adores his sister, but has had to be without "mom" during Brooklynns hospital stays. I wished she didnt have to suffer the pain that she sometimes endures. But she is perfect. Absolutely perfect. There is not a day that goes by that she doesnt put a smile on my face, or make me laugh because of the silly things she does. She has been the most amazing gift and the perfect addition to our little family. My son adores her. And she is the biggest daddy's girl! Every time I am out with her, I am stopped. She put's a smile on the faces of everyone she meets. She not only brightens up our home, but she makes the world a brighter place to live. Now to all of you....I recently watched the RTS video that just came out to purchase. One thing stood out to me. One of the mothers stated that "if her child had to have a syndrome, she was glad it was RTS." SO AM I!!! If Brooklynn has to have a syndrome, I am grateful she has RTS. You all have been the greatest support for me this first year! I feel like God has blessed me with a second family. Until Brooklynn came, I never realized how many truly amazing people there were in this world. Thank you all for everything. There are 2 other RTS families besides mine that live here (within 5 minutes of me) who have been a great support as well. And there are I believe 6 families that are within an hour of me. I havent met them all yet, but hope to soon. We were unable to attend this past conference due to Brooklynn's surgeries, but I hope to meet all of you one day. What a journey this has been. Brooklynn has taught me more about life than I could ever teach her. They say as parents we try to teach our children all about life, but our children teach us what life is all about. Thank you all again for all the support and encouragement this year. I am sorry this is so long, but I have alot to write, as I have a lot to be grateful for this year. We've made it through year 1!!! A happy 1st birthday to my sweet sweet girl tomorrow! (And then a happy 9th birthday to my son on
Saturday!)

Our perfect addition...

So I just wanted to give an update! Since Brooklynn's surgery, she has done fantastic! Her tethered cord surgery was a complete success, and minus some granulation tissue around the incision site which she is taking an antibiotic for (and we have had this previously on another incision site) the incision is healing very well! We took her to the neurosurgeon yesterday for her post-op and everything was great. We go back in 6 months for a follow up MRI. Her leg on the other hand, obviously we wont know anything for awhile. We don't go back to the orthopaedic surgeon until the middle of December. I guess then he will take the cast off and then I don't know what. He was only able to straighten her leg a little bit and after her surgery, he had mentioned taking her back into the OR a couple more times to straighten her leg out a little bit at a time and to keep recasting it. I hope this isnt the case. I dont know how long it will be before she'll be able to walk. Thanks to the tethered cord surgery, she is finally able to sit up! She can now sit un-assisted for 30-60 seconds at a time. And she'll go longer and longer every day we do this! It looks like that surgery relieved alot of her bowel issues as well and she is now having no issues producing a bowel movement...and I wont even know it until she fusses about it! Before, I would know because it was so hard for her to go! I have seen so many positive improvements from this surgery, I am just thrilled! And I know she is too! :) She is just doing so great. She's becoming very nosey too! She is starting to get bored with all her toys and is always looking for something new! If I put toys out in front of her, she will bend over backwards and look behind her for something else! She will tilt her head to look at things sideways too....which is so adorable! And when she wants to be held, she will whine until you come to her, and then she'll reach out for you to pick her up! Especially if your her daddy! Haha! She recognizes her name and will look at you when you call her. If she drops a toy on the ground that she still wants to play with, she will get upset until you pick it up and give it back to her. If I count to three slowly, she laughs in anticipation that Im going to tickle her. She pulls her socks off....and pulls her bows out of her hair....and then eats them..haha. She loves to look at herself in the mirror!!! She will look at herself for an hour if I let her! She'll reach for different things to play with, and likes to play with the phone, her feeding pump, and still loves her books and dolls. She loves anything that lights up or plays music, and loves it when I dance with her. She smiles and laughs. When she's tired, she'll let you know. She'll take a quick 5-10 minute cat nap and then she's good as new for a couple more hours. She still sleeps about 10-12 hours a night and rarely wakes up during that time. Some days are harder than others, but so much progress is made every single day, and I wouldnt change a single day that I have spent with her. She has been an amazing journey and has taught me more about life and how important the little things are, than I could ever dream of teaching her. She has the most beautiful spirit. I am enjoying all my time with her now, and look forward to what she'll bring to our family in the future. So much joy and excitement and so much to look forward to. She was our perfect addition.

Better day....

So Brooklynn had a much better day today than she did last night! Last night was a complete nightmare! Her orthopaedic surgeon wasnt kidding when he said this was a painful surgery. And he told us this BEFORE he actually went in and saw what he unexpectedally saw. There ended up being much more to this surgery than we thought. She screamed in pain all night long. Her heart rate was jumping and her sat's were dropping. She was being given morphine every 2 hours, and every 4 hours was being given Tylenol with Codein and Motrin at the same time. They even started giving her Lortab on top of it all! Nothing was helping! I felt so helpless and spent some of the night just in tears right beside her. But luckily, she has had a good day. She will still have spasms of pain and will cry, but nothing like last night. Tim has to work tomorrow so he went home, and it's just Brooklynn and I here tonight. But before he left, we unhooked her from all her monitors and pumps, and she went to dinner with us in the cafeteria. We piled some pillows, blankets and her boppy in the radio flyer wagon, propped her leg up, and wheeled her down there. Of course her favorite baby doll came too. :) She had fun. It was good to get out of the room! We also took her down to our usual floor to see all our nurse friends there. They were sooo excited to see her!!! Then we went to the family library down on the 2nd floor and rented the new Karate Kid movie. I have been dying to see it. Very cute! The pain med's have been minimized to regular Tylenol and Motrin, and is still ocassionally receiving blow by oxygen to keep her sat's from dropping. She is trying to go to sleep now and is a little fussy and seems slightly uncomfortable. We are going to try and wait it out and if she needs a dose of something more to keep her comfortable, we may give it to her. But for now, I am hoping she will just fall asleep without it. I am going on about 4 hours of sleep in the last 60 hours (to be exact..oh my gosh i just added that up!..lol) Waiting on her to fall asleep peacefully and I am OUT! Hope everyone has had a good week so far and a happy Friday tomorrow! Brooklynn will be getting a hard cast on tomorrow put over her soft cast and hopefully we'll be going home soon. Have never made it out of the hospital in less than 18 days for any visit, so if we make it out in less than a week, I will be ecstatic! Talk to you soon.

XOXO

Zzzzzzzzzz...........

Wow what a long day. And boy am I ready for it to be over! Up at 4:30am, we headed to the hospital around 5:20 and got here a little after 6am. Brooklynn was the first case in the OR this morning. They always try to take the little babies first. And because we had to coordinate with multiple surgeons (3), they don't want to change her time because then it would screw everyone up. So surgery was scheduled to start at 7:30am, and at exactly 7:30am, off she went. That is most definitely the hardest part of the day. I absolutely hate it! There is no worse feeling than having to kiss your child and tell her how much you love her, and then hand her over to the nurses. For those few grueling hours, she is out of my hands and I honestly honestly cannot stand it! They called about an hour in, and she was doing great. The nuerosurgeon's part took right at 2 hours, the orthopaedic surgeon a little longer. All together, they started at 7:30am, and we didn't see her until approximately 6 hours later, right around 1:30. We got quite a few updates through out her time in the OR. There is nothing better, yet nothing scarier than when that phone rings in the waiting room and "West" is called to answer it. Good news or bad news? You have this kind of awful numb, sick to your stomach feeling...until you hear those 3 sweet words, "she's doing fine." Then I can breathe again. Ahhhh. Another couple hours and the phone rings again. Luckily today, all our phone calls contained those 3 sweet words. The neurosurgeon's part went great. She did great, and the surgery was easy breezy. But for those who know Brooklynn, you know how much she loves to surprise us all. The orthopaedic surgeon got the surprise today. Her leg was much worse than he anticipated. For the sake of your sanity, I will leave out the details. But like a jigsaw puzzle, she has been beautifully put back together. The general surgeon went in last. His was a quick 5 minutes spent in the OR. Doesn't get better than that right? We are now all back in the room, the guests have left for the day, and Tim and I are finally able to sit on the couch next to her bed, and with a sigh of relief, we are all still breathing. (((And waiting on Chinese to get here!))) Brooklynn is getting plenty of pain meds (morphine and tylenol with codeine along with motrin), and is sleeping, although not as peacefully as we'd like. Her Sat's occasionally drop and she is being given a little oxygen until the doctor gets here. (He's been called because of her sat's). But this is not uncommon for her oxygen levels to drop right after a surgery. And THIS was a surgery! A painful one. But she continues to AMAZE us everyday! And today, she has proven to be the most beautiful, strong and amazing baby I have ever known. Thank you everyone so much for all your thoughts and prayers! There is no greater power than the power of prayer. She woke up for a little while earlier and we were lucky enough to spend about 2 hours with her. We talked and sang songs and when she wakes up again, we'll be right here by her side. Sleep tight.

So much good news to share...

Okey dokey friends....I feel it is time to update the blog once again! I know it's been a while, but we've been super duper busy. But I have so much to talk about and so much good news to share!
First, Devon is almost done with baseball. Yay! Haha. No im kidding, thats not the good news. As soon as baseball is over, he will start basketball for the winter, which he seems to like much more than baseball. He is also in the midst of testing for his black belt! And is ALMOST done! He has passed his mile run (run a mile in 10 min.) and has passed his 10 min drill (100 push ups, 100 sit ups, and 250 balance kicks with each leg all in 10 min.) He has also passed his 1st pretest! One more pretest and the final test will be Nov. 13th. I am soooo proud of him! What an accomplishment to not only have his black belt before he's 9 years old, but to have stuck with something and worked hard at that something for sooo long! He has been doing this since he was 3, and has never even taken a break. I think thats pretty amazing for someone so young. Just sayin'. On top of that, he got his first report card of this school year yesterday, and again, all A's!!! He is really just an all around amazing kid. I am so lucky to be his mom. So lucky.
Now for Brooklynn! Sweet baby Brooklynn! Oh the accomplishments she has made! Yep, she has FINALLY rolled over from tummy to back! (8 months old) She has only done it twice, but considering she has not yet had her knee surgery and cannot yet straighten her left leg to be able to push herself over, it's pretty amazing she can do this. She has to work twice as hard than the general population of babies to accomplish these "simple..not so simple" tasks, yet she accomplished this! I am a little sad that her last surgery had to be postponed due to her running a 104 temp., because her therapists were so sure that had her surgery been in Sept. like planned, that she would be crawling by Thanksgiving (10 months old) and walking not long after her 1st birthday. Yes, they know all about RTS. They know that it's not the typical age for these things to happen. Yet they felt that Brooklynn pushes herself so hard and tries so hard to do these things, that she would accomplish them so soon. She just can't do any of these things until after her surgeries. If you put her in the crawling position, she can hold it for a short period, and will rock back and forth....obviously trying to get somewhere! :-) We'll see what happens after her surgery. It has been rescheduled for Nov. 3rd and she will have a full leg cast (from foot to hip) for at least 6 weeks. Then of course she will have to go to rehab after that to learn how to use it. She has never been able to straighten her leg since she was born so this will definitely be a task getting her used to using this leg. Also, she has begun to mimick sounds that I make. :-) YAYYY! If she is in her nonstop babbling mood, I can make a soft babble noise, and she will make a soft babble noise. If I make a loud babble noise, she will make a loud babble noise. Then laugh! She is so stinkin' cute! She is also now finding it hilarious when her brother plays peek-a-boo with her! He will hide behind her dolls, or on the other side of the couch, and jump out and scare her while yelling "fishy". ( I have no idea why he choose that word..) But she will get startled, then finds it absolutely hilarious and laughs her little tushy off at him. And she lovesssssss to pull his hair. She loves to pull everyones hair, but her brother is nice enough to let her pull his! They absolutely adore each other. And she lovessss her daddy's hats! He always has a baseball cap on, and as soon as he walks through the door and she hears his voice, he will bend down to kiss her and she tries to steal his hat! Sneaky girl. He always has his ways of making her smile too. She just has to hear him and she's searching for him. Definitely a daddy's girl. She has also found it hilarious to put her paci in her mouth, then take it out and stick it in my mouth, then her mouth, than my mouth, etc. When she takes it away from me, she laughs hysterically. She is such a goober. A super duper smart goober! She has incredible recognition too! There are certain songs that I can sing to her, and as soon as she hears them, she is smitten with joy! When I sing her new songs, she will just stare and listen. But when it's something she knows, she gets so excited! I am so proud of her accomplishments. I know for those of you reading this who don't have children with special needs, this doesnt seem much, as many of these things all come natural to most children, as it did my son. And those of you who have children with RTS or other special needs will really appreciate this. But these are huge accomplishments for Brooklynn. She has to work extra hard, as do all our children with RTS and other disabilities to accomplish the "little" things. So for her, the "little" things, are not "little." They are "BIG!" And I am so proud of her.
On another note, I have to send a HUGE thank you to all those who put in so much time this past weekend making her benefit happen. It was so much fun and a HUGE success! We definitely have our struggles at home, but I am so blessed. I really have so many amazing people in my life and so much to be grateful for. Life is good. Life is very very good.

XOXO

Oh my frustration, is in escalation!

I cannot even begin to express my frustration at this point! We are getting absolutely no where with this calorie, bile, pooping thing! I understand that children with RTS have extremely slow growth, but as Brooklynn being almost 7 months old, and still only 10 lbs. 10 oz., even on the RTS growth chart, she is still less than 10%. This little girl is super tiny! 2 1/2 weeks ago, her GI doctor finally (after 3 months of trying to obtain this) gave us the recipe to concentrate her formula from 20 calorie to 24 calorie to hopefully speed up the weight gain. Well, we tried it. And well, she couldn't tolerate it. She attempted to vomit (with no luck, due to her last surgery...the Nissen Fundo.) When she tried to throw up, I immediately stopped her feeds and vented her tube, only to receive nothing in return but bile. She had not pooped at this point in 3 days. So I called the surgeon, and immediately took her to the ER at Egleston Childrens Hospital. Almost the moment we arrived, they took her right back for Xrays and an Upper GI. Everything looked great! There was not another blockage (which was our concern,) and her intestines were not malrotated again. Picture perfect for what it can be. Obviously internally she does not look like your average baby due to quite a few different surgeries, but picture perfect in the world of Brooklynn anyways. So after speaking with the surgeon, we put her back on her normal 20cal formula until we could talk with her GI on Monday. Monday comes, her GI swears the 24cal had nothing to do with what happened. (I swear it did.) So again, we attempt the 24cal. Again, she tries to vomit. Again, I vent her tube with bile return. Again, I put her back on 20cal. Again, I call her doctor. Again, I attempt 24cal. Again, she tries to vomit. Get the picture? So last Wednesday, her surgeon (yes surgeon, not GI, because of her surgeries, her GI always wants us to talk with the surgeon..not her,) called in a couple prescriptions for her. So back on Reglan and Prevacid she goes. But of course, not until a week later, because her insurance likes to deny everything and it took us a week for us to be able to actually retrieve the prescription from the pharmacy. Ugh! Insurance. Our last insurance company never questioned a thing with her! This one denies everything! We had to change because I resigned to stay home and take care of Brooklynn. Insurance was through my job. Anyways, so back on Reglan and Prevacid. Hoping this helps to reduce the acid and help to empty her tummy quicker. Maybe after being back on this combination, she'll be able to tolerate 24cal again. Sooo, we were at the GI doctor on Tuesday this week. I told her that I was somewhat concerned that Brooklynn had not pooped since last Thursday. I always feel her tummy, and it's always soft, but I cannot get her to poop! Her GI felt her tummy, which was soft, and attempted to help her poop, but didn't feel anything. She get's Miralax daily and on Monday I gave her a suppository as well. Did she poop? NOPE! So here we are, Thursday, still no poop. It's been a full week now. Her surgeon has numerous times expressed his concern for her to poop daily because of her previous malrotation. She just wont go! And I'm very worried for her! Back to the Reglan and Prevacid. So she's gotten 2 doses in so far. And we attempted the 24cal again yesterday. But this time...I calculated her daily calorie intake, and decreased her volume. Instead of 31mL/hr. for 20hrs/day, she is getting 29mL/hr. for 20hrs/day. She is still getting many more calories than she was with the 20cal, but not as much volume. I kind of just halfed it to start from what she was originally getting, to what she would be getting had I stuck with the same volume, but increased to 24cal. Confused? Unless you've gone through this, I wouldn't be surprised if you weren't. So this morning we wake, or let me say, Brooklynn wakes me up with her moaning and groaning, yet still sleeping self. I vent her tube and get tons and tons and tons of air! We always get a lot, but with this new recipe, we seem to get much more. And the formula that came out with the air, well...oh wait, no formula...BILE! Tons and tons of BILE! She has not attempted to vomit, thank God, but somewhere and I don't know why, her body just does not respond well to this change! So once again, I have left a message for her GI doctor to call me back. And once again, this better get figured out...yesterday!