Anxiety issues...

So I know this is probably very silly, but I would just like to hear everyone else's thoughts on this. Tim and I have not gone anywhere together childless since Brooklynn was born. We've gone on dates of course, but I have NEVER left her overnight. I have agreed to go to the mountains for a couple days in December, and I'm already having anxiety over it. I wake up in the middle of the night and just worry. I never liked leaving Devon either when he was little, but he was never on a feeding tube, heart and apnea monitor, had 7 surgeries, feeding/sensory/mobility issues - and the list goes on. Plus he's almost 10 and is very self dependent. Brooklynn is a little different. Well, she's A LOT different. My mom is coming here to stay with them and I know they will be fine, but how do I shake the anxiety of leaving? She's almost 2 and I seriously have never left her for a single night...with good reason. I actually have never left her longer than just a few hours at a time, and even that is not often. Other than Tim, nobody has ever even driven her in a car somewhere besides me. I know this has got to be crazy. But she eats every couple hours on bolus during the day and has to be switched to continuous at night, her monitor needs to be turned on at night, when going somewhere - her travel feeding bag needs to be hung in the car a certain way, if her tube gets pulled on - it hurts and could possibly come out - and if it does, that's a hospital trip, she gets miralax every morning and if its skipped - she'll most likely need an enema the next day (yes, it's that bad), if she touches certain things she's not used to or has a certain texture - she gags and will try to throw up, she doesn't have full range of motion in her left leg, so if it's positioned a certain way, it could be catastrophic., if you aren't extremely familiar with her personality and sleep pattern, you might think she was happy and playful when she's really running a 104 temp with a wbc of 60,000., oh my gosh the list goes on forever. Other than Tim and myself, there is nobody I trust more with my children than my mother. That is not the issue. The issue is my worrying and anxiety over leaving her! Even with Devon, my typical child, I had a hard time leaving him for a long time. I had to have gall bladder surgery when he was 2 weeks old, but I never voluntarily left him until after he was 1. I don't see how any parent voluntarily leaves their children for more than a night so early on, but I understand that every one is different and I respect to each their own. I just personally can't do it. They are still so little and so dependent. And just not old enough for anyone else to have spent enough time with them to know their quirks and what works and what doesn't. Now with Brooklynn, I know she's almost 2 and it's a little extreme, but with everything she's/we've been through - and still going through...hmmm. Maybe I'm being paranoid and need some anxiety meds. Maybe this is normal! Really, what is normal anyways? Everyone is so different - is normal even a word? I doubt I'm the only one like this. Maybe I am. Maybe not. When did you leave your children for the first time - and how often do you leave them? And I don't mean just to go to work, I mean take an overnight trip without them.

It's Incredible!

I don't even know where to begin! What an amazing day! GOD IS SO GOOD! I know you're probably thinking I'm nuts. My daughter just had her 7th surgery today totaling 5 times under anesthesia in the OR, and I'm writing celebrations. I have to admit, yes, I am a little crazy. I stress out so much in the week leading up to her surgeries and I become a little stand-offish and insane. I spend hours upon hours going through her medical records, previous doctors and surgery notes, and researching anything new that I have yet to learn on RTS, anesthesia, bone structure, etc. Basically anything and everything having to do with Brooklynn and surgery so that I am able to ask any questions I have beforehand and answer any and all questions they might have for me. And although her doctors have been more than fantastic doing their own research on RTS, I feel that since it is still so rare, they are not always going to be updated on the new findings that our RTS community becomes aware of. Therefore, it is my duty as Brooklynn's mother to make sure they have everything they need to be prepared for what may happen while in their care. I mean, if your typical child has recently been injured or ill, you as a parent would notify their day care or school of this matter wouldn't you? Well, this is no different. It's my job. And by all means, I am more than happy to do this for her...for them...for me. So in essence, the week leading up to surgery is an emotional one for me. Then comes the night before. The week of surgery, I try to keep Brooklynn at home as much as possible. I do this so she doesn't pick anything up and get sick. Surgery would have to be cancelled and rescheduled which would mean another week of me being crazy. Ha. The day before surgery, I really don't go anywhere and we stay home all day. I try to get her to rest and relax as much as possible and the night before I let her spend extra time in the bath (she loves her baths), feed her, and get her to bed at a decent time so that she is energized and strong for surgery the next morning. Last night was great. My wonderful mother came over and made us dinner. One less thing for me to worry about. :-) So of course I am up most of the night before surgery. Not just because I worry so much, but also because I have to switch her continuous drip of formula over to clear pedialyte at midnight, and then turn everything off at 4:30am. I woke her up about 5:50 this morning, we left the house about 6, and got to the hospital about 6:40. Brooklynn's watched Mickey Mouse Clubhouse the whole way there and was in a great mood. They took us back to the room to prep her about 7am. Someone comes in to take vitals, then the surgeon's residents come in and ask questions, initial the surgical areas on Brooklynn with a marker, etc. Then the surgeon comes in. He looked her over once more and at the last minute, we decided to just do the one finger. Her thumb cannot be fixed, but it is fully functional and she is not at all bothered by it. (It's perfectly straight, it just doesn't bend at the middle joint.) Then he leaves and the nurse anesthetic comes in. We talk and address concerns and what their plan is for her. Everyone adores her (OF COURSE!) because she is laughing and smiling and having fun with them so early in the morning! One nurse even brought her an adorable white teddy bear for her to keep. We brought her puppy with us, but she really loved the bear too! They both went back to the OR with her, along with her favorite blankie. Okay, so this is the last time I cried. I always cry when they take her from me. Even though she's smiling while they wheel her away. It's just, she doesn't usually go places with people. She's never had a babysitter before. Just my mom, my dad and my mother in law. And never longer than just a couple hours. In my mind, I know she'll be fine. They take such great care of her at Egleston. They all know her so well and are very aware of what might happen and what precautions to take. But there are always risks. Especially with her airway. And so I cry. As soon as she goes back is the time to do anything we need to do, so Tim and I walk down and grab a coffee and a croissant. Thank goodness for Starbucks at the hospital! Once we walked back up to her room in the surgery center (we don't have to wait in the waiting room...I think they love us now), we watched TV and waited about 20 minutes before they called us to tell us she was asleep and doing great. About 30 minutes later, her surgeon comes in, tells us it was a success and she did great. About 45 more minutes go by and the phone rings again. The nurse tells us how absolutely beautiful she is, that she hasn't woken up yet, and that she's going to bring her to us in just a few minutes. Then about 15 more minutes go by, and in rolls her bed with a sleepy but awake Brooklynn. She looks at Tim and I with her sweet but sad face, then closes her eyes and goes back to sleep. Another hour goes by while I just lay next to my sleeping beauty waiting on her to awake. They come and check her vital signs once more and we hook her back up to her pump with some pedialyte to make sure she can tolerate it. She finally wakes again. This time she has a grin from ear to ear! She is so happy and talkative and ready to go home! She doesn't even look like she's just had surgery! SHE'S AMAZINGGGGGGG!!!! I'm telling you, just when you think you love your children more than you can ever imagine, sometimes they'll do something and all the sudden your heart finds a way to love even harder. What an overwhelming feeling! And I can't believe they let us go home! We've had stays ranging from 3 days to 18 days. NEVER have we gone home the same day! She just did so fantastic! So in all, this is a day to celebrate for many reasons! 1. We got our favorite post-recovery nurse who we love and loves Brooklynn. 2. During the few short hours we were there, she was visited by 3 of her surgeons! They were obviously in the OR and saw her name on the board and wanted to come see her. We just feel so much love at that hospital. It is truly an amazing place. 3. Her quality of life and use of hand was just made better by another amazing surgeon. 4. She made it through her 7th surgery with ease and grace and a smile on her face! 5. We're all back home again! She is now asleep in her swing, surely gaining energy to become the vivacious little munchkin she always is. We're just waiting for her to wake up so we can be blessed once again by her beautiful smile! God is so Good! What an amazing dayyy!

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!

It payed off to be a bitch...

Soooo we have returned from the GI doctor. This was the first time since Brooklynn was about 5 weeks old that I have attempted the drive to the Childrens Hospital (about 45 min. away)with just her and I. Since the time she was on a heart and apnea monitor and it went off telling me she wasn't breathing. So there I was on the side of I-75 by myself about to have a heart attack because a dumb monitor decided to go off due to "shallow" breathing. Ever since then, I always found someone to go with me. Usually my mother in law or one of my great friends (also a neighbor). I'm more comfortable now that I've had time to process the fact that really...I dont think she's going to stop breathing. BUT...she did screammmmmmmm the entire way there...and home! Ahhhhhhhh! I will continue to find someone to go with me. Unfortunately my mother in law has now moved away, and my friend is leaving to visit her family in India for a few months. (I will miss her!) :-( Any volunteers? Kidding. So a follow up from my last blog...the visit to the GI doctor went fabulous today! I think I have finally made a believer out of her that Brooklynn's situation is quite severe. She will most likely have her Gtube for at least a couple years. And the constipation does not subside on it's own. Not with this baby or any other RTS baby that I am aware of. GI issues with RTS, we're told, need to be treated aggressively. We were finally given the recipe to make 24k/cal Alimentum and will start that soon. Hopefully she will quickly gain weight. She is currently measuring less than 1%tile on the weight charts for the "average child" and less than 3%tile in weight on the RTS charts. She is tiny no matter where you chart her. They labeled her condition at the GI doctor as "worsened" since the last time they saw her. Well DUH! Why the hell do you think I have been trying to get the recipe for 24 cal formula for the last 3 months and an appt. for the last 5 weeks! This was their last shot before I changed doctors. This doctor has been highly recommended by all her doctors and staff at CHOA. She is a wonderful doctor and so kind, just very hard to get a hold of. Until now. Now that she's realized how severe this issue is. Needless to say, all went well. We have the recipe and will be starting this soon. We also have another appt. to go back and see her in 2 weeks! WOO-HOO! Our goal is to make her gain weight! This will help her not only in her development (being able to support herself in a sitting position, crawling, etc.) but also help her to recover from her surgeries a little easier and quicker. Next surgery....September 22. Quite a few visits to the GI before than. Yay!!! For some reason, it has never worked before, but, for once in my life......it payed off to be a bitch. Until next time...

When to become a bitch to benefit the health of your child...

So where do I start. Hmmm. When Brooklynn was born, they were giving her Similac Advance in the NICU. She did not tolerate it well. After we brought her home and after talking it over with her Pediatrician, we switched her to Similac Alimentum. She tolerates this much better! (Yes, I wanted to breast feed but the doctors wouldn't even let me attempt it. After consults and medical supplies, I pumped for her as long as I could.) To shorten my story, Brooklynn at 6 months old now, is still on Similac Alimentum. It is 20 calorie formula and she gets 31mL/hour for 20 hours a day through her Gtube. As time goes on, I have upped and upped the volume on my own by just figuring out when she would get hungry and not getting enough. (Her GI doctor should have been telling me all along when to up it and to what.) Im pretty sure this is where we've maxed out for the moment at 31mL/hr. I've tried to up it but her tummy is only so big! She can only tolerate so much and when she can't, I back it back down to the max that she CAN tolerate. This is the time where she's supposed to be getting baby food. She cant. She just failed another swallow study a week ago and can still have nothing at all by mouth. She aspirates EVERYTHING! So what to do? Well, we can't up the volume and we can't feed her baby food or anything thickened through her tube or it will clog. We have to up the calories!!! Allllll these problems are the problems for her GI doctor. We haven't seen her GI doctor since May 19th and aren't scheduled to go back until August 20th! ARE YOU KIDDING ME!!!!! We have had to wait 3 months to see her GI doctor again! This is ridiculous! This baby see's 9 different doctors, and except for her 2 geneticists (who we only see once a year each), we see her GI doctor the least! HELLO!!!!!!!! This is most of her problems! Sure she still has a tethered spinal cord and needs a knee reconstruction but those are quick fixes with a surgery and boom! Healed! As quick as she aspirated during her swallow study, this baby is going to have her Gtube LONG TERM! It could be another couple years before we take it out. On top of all this, she's constipated! GI GI GI!!!! I have attempted to call her doctor and get some answers 5-6 times in the last couple weeks. This baby is HUNGRY! I have told them this over and over and over! I can't just concoct my own recipe and assume it's going to turn her 20 cal formula into 24 cal's. I can't just feed her baby food (which by the way she lovesssss. :-( ) and take the chance of her getting pnemonia or upper respiratory issues. I am at a loss! A couple weeks ago I was told I was going to get a phone call right back with the recipe for 24 cal formula...no call back. Last week they told me they were going to send me by mail the recipe for the 24 cal formula....nothing! I am not kidding when I say...Brooklynn is getting sick! She is crying at night because she is so hungry. Her eyes are red and puffy. So yesterday...what did I do, I gave her banana baby food! I had to! She is starving! I would rather deal with an upper respiratory infection than have her starve! So I called her GI doctor again this morning. In tears of course. Upset and threatening at the same time! Oh I can yell and cry at the same time. Call me talented. Ha. I told them that this was the very very very last chance they were getting to help me. I told them that instead of having to make her own formula, I wanted to use Duocal in her formula to add more calories which is what I've been told quite a few others have done with their children and it has worked well. I also told them that I am demanding for Brooklynn, my 6 month old who is growing slow and needs her intake changed often, to be seen in their office every 6 weeks at the LEAST, preferably every month! NOT every 3 months! I told them if this doesn't happen, and Brooklynn get's sick because they were able to help her and do something about this but didn't, I will switch doctors and report them to everyone I can and know that can make their lives hell! You have no idea what A bitch I can be when it comes to my children! And if it's your fault that she is getting sick and not getting enough nutrition, when you can clearly help her...I will do what I can to make you miserable! So of course, again, her nurse says that she PROMISES she will go talk to her doctor and call me back TODAY! HAHA! Thanks for listening and I'll let you know the outcome. I have been told by numerous other physicians and hospital staff that she is the "best!" Should I not receive a call back, I will let you all know who she is!!!

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around….and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

By Emily Perl Kingsley

Dear God, Why?

Dear God,

You could offer me a billion dollars, a lifetime of bliss, and the promise of a baby girl who was 100% completely healthy and she would live to be 102, yet, I would not give her back to you. I would not trade her for the world. But I will tell you this. I hate RTS. Absolutely hate it. I will never understand why you put these children through what you do. Why the pain and suffering? Why make life so much more difficult for them than it should be? I don't understand it. I don't expect I ever will. I have kept my faith that you have given me and my family the strength to deal with this and to help Brooklynn through all of her struggles, but why have you given her these struggles? None of this makes any sense to me. I am trying to find the answer to this. She is the most beautiful amazing little girl I have ever seen and could ever imagine. She is always so happy and so sweet and she can put a smile on the face of anyone! And I mean...ANYONE! She smiles and a stranger walking by will stop to talk to her. Did you do this because it's true, nobody is perfect? You made her so beautiful, friendly, loveable, and just truly amazing. Is that why you had to throw RTS in there? Because she couldnt just be who she is without the struggles. I am keeping my faith in you, and I hope one day that you will show me the answer to this. I thank you for what you have given me. But why have you given Brooklynn what you have given her? Why have you had to make her life so much harder?

Love,
Katie

A whole new view...

I am completely exhausted today, although Brooklynn's first day of physical therapy went great! It was more of an evaluation, but I learned a lot of neat new tricks to try with her to help strengthen her muscles. Brooklynn was a total groucho though. Her tummy wasnt feeling so good this morning so she cried a lot. When I say a lot, compared to a lot of other babies it's really not that much. It's just that Brooklynn only lets out an actual "cry" about once every 2 weeks. Usually she's a happy content baby. Im sure the people in the waiting room just LOVED us today. Haha. I know it's a lot harder to have to listen to a baby cry when that baby isn't yours. Anyways, they used the 2nd Peabody test to evaluate her and she tested on a 3 month old level for stationary and reflex (her alignment and moving her limbs and head, etc.). Unfortunately she only tested at a 1 month old level for locomotion. But hey, that's why we are there right? Today gave me a whole new grain of hope for us. I was seeing the things the therapist was doing with Brooklynn and thinking to myself that...wow, she should get this in no time! It all looked simple enough and Brooklynn was responding very well to her tactics. She was doing all the "right" things. It really was great and I just think that this was such a huge step for us. Therapy is one of the most important things for a child with RTS and I am so glad to have finally made it to this point. I know it might seem crazy to others that a 5 month old has already begun therapy, but we all take for granted how important it is and how much work it really is on our childrens part to be able to do these so called "simple" things. I know I did with my son. It all seemed to just come to him. With Brooklynn it takes alot more thinking and effort on her part. It's not as easy as we all think it is. We never really realize how important it is for them to be able to hold their head up, roll over, push up with their hands, sit up on their own....even just to be able to move their neck and head to look from one side to the other to be able to see who is talking to them. These little things are so important to our children and really set the ground for the bigger things in life. You have to master all the small steps before you can walk to the potty on your own, go on a family bike ride, play jump rope with the neighborhood kids, run on the playground with your best friend, be able to go swimming when you take a family vacation. All these big things are what we, as adults, just do. We dont think about it, we just do it. Could you imagine not being able to do these "simple" things? Could you imagine not being able to get up and go to the bathroom when you need to, or even just be able to look to see who it is that is talking to you. I couldn't. Thanks to Brooklynn, I don't so much take the small things for granted like I always have in the past. I am starting to appreciate the simple things I never did before. Thanks to Brooklynn, I can now view the world in a different light. She was given to me for a reason. I think this is one of many reasons. And she is one special little girl.

A frustrating day...

I'm slightly frustrated today. Trying to get all our things in order, we've recently had A speech therapist and a physical therapist come to our home to score Brooklynn on certain tests that we're needing. First the speech therapist did her test last week. Brooklynn scored on a level of a 3-4 month old baby. With how small she is, and everything she's been through....I was thrilled!!! Obviously she cant speak, so she is tested more on cognitive developement, etc. - following sounds, responding to voices, putting things in her mouth, etc. She did great! Well, today the physical therapist came out. He used a standardized Peabody test. He tested her on things like head control (holding her head up, turning to look at you when you speak), playing with her toys, pushing herself up from her belly, rolling over, etc. She's testing on a level of a 1 month old baby. :-( I have to keep telling myself it's really better than that. She actually has great head control and he gave her that. She cannot yet push herself up, she can roll from her back to her side and back to her back, but she cant yet fully roll over. She'll look at you and find you when you talk to her, but if she's on her tummy, it's hard for her to turn her head completely so he didnt give her that either. With this test, unlike the one the ST used, it is standardized with standardized scores. So when he scored her, it's all or nothing. There is no in between. No points for being so close to doing some of these things. I just have to give myself peace of mind by knowing that she really IS so close to doing some of these things. Not only is she close, but does it matter? Does it matter if she does these things right this moment? As long as she tries, right? And she does. She tries very very hard. She has so much will and determination that I know in no time at all she'll be doing these things. She may not reach her milestones the same time other babies her age will, but she will. One day. In the end, she's a very happy baby. She smiles and laughs. And that's what's really important. She smiles and laughs.

Long Awaited Knee Results...

After the discovery that Brooklynn may be missing her left knee cap, we have received the long awaited results of her ultrasound. It turns out that she DOES have a left knee cap. :-) It is smaller than the right one and off to the side (dislocated.) This will require a knee reconstruction. One thing after another right? I always try to look at the positives of these situations, so here's what I've come up with....1. At least she HAS a knee cap which gives them something to work with. Still growing, I wouldnt have a clue what they would do had she not had a knee cap. With her 5 months old, seems like it would be almost impossible to have to put an actual knee cap in place that would be able to grow with her. 2. At least the Orthopaedic surgeon has agreed to work with the Neurosurgeon to complete both surgeries at once. At first, the Orthosurgeon was totally against the idea and wanted to do his separate from the Neurosurgeon. Thanks Mr. Mean orthosurgeon. Dont mind the fact that she has a syndrome in which anesthesia could be a scary process and it may be better to keep her from having to go under as much as possible. (The orthosurgeon is not my fav!) Surgery on her spinal cord and her knee will both be completed at the same time with the neurosurgeon going first. 3. At least we are getting all this out of the way while she is still so young and won't remember. 4. With any luck at all, hopefully we wont have any more ortho issues and can avoid this doctor. He can keep his arrogant attitude, bad bedside manners, rude office staff and 2 hour waiting room wait times to himself. We dont want it anymore. Soooo, there are my positives. I can also add that Egleston has the best grilled cheese sandwich I've ever had. Seriously. They put a couple different kinds of cheese on it and it is super yummy. But I would trade that for not having to go back ANY DAY! So September it is. Back to the hospital for another stay. It is a typical 36 hour stay required after surgery for her spine, and Im not so sure about her knee yet. Apparently to ask the orthosurgeon any kind of questions you have to schedule an appointment before surgery. Ugh. And then there is always getting her back up to a good amount on her feeds before we can go home. This time shouldnt be so tough though since this is not a stomach surgery like her last 2. Hopefully we'll have more answers soon. I'll let you know then. For now.... XOXO, Katie

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