Brooklynn's Hope

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Brooklynn's Neonatal Woe's

  • Born at 5 lbs 8 oz. she was less than 4%tile in weight
  • At birth she went into respiratory distress and was immediately taken to the Neonatal ICU and put under an oxygen tent for approx. 18 hours
  • At day 2 of life she had shown difficulty feeding due to uncoordinated suck and swallow and required a combination of NG tube and oral feeds.
  • She had hypoglycemia and jaundice which was mild enough to not require any treatment.
  • Day 2 of life she had an Echocardiogram performed on her heart. It demonstrated a small PDA and a PFO with mild pulmonary stenosis and a bi-directional shunt. There was a domed pulmonic valve and an increased right ventricular pressure. She had a single episode of bradycardia.
  • A swallow study was performed during her NICU stay which showed aspiration into her lungs and began feeding with the help of a Speech Pathologist 2 times a day with the rest of her feeds through an NG tube.
  • She was discharged from the hospital at 18 days old on a heart and apnea monitor with an NG tube for her feeds.

Brooklynn's Medical Woe's

  • After seeing an Emory Orthopaedist and an Emory GI Specialist, we were sent to Egleston Childrens Hospital for a few outpatient labs; an ultrasound on her hip to make sure it was in place due to her contracture in her left leg, an Upper GI to show possible GERD (reflux), and a swallow study to see if she was still aspirating. The ultrasound on her hip demonstrated that her hip was in place and all was well. The upper GI had shown that she did infact have reflux disease and also had shown unexpected Malrotation in her small intestines. We never made it to the swallow study as she was admitted through the ER for immediate emergency surgery to correct her Malrotation.
  • On March 2, 2010, Brooklynn was admitted to Egleston Childrens Hospital and taken to the operating room for open surgery. She underwent a LADD procedure This included a duodenostomy repair of duodenal atresia and annular pancreas, placement of gastrostomy tube (G-tube) and an appendectomy. During her stay, she was seen by an Emory genetics doctor and was clinically diagnosed with Rubinstein-Taybi Syndrome at 6 weeks old. She was discharged 15 days later on March 17, 2010.
  • Home for 40 days, Brooklynn had many choking spells due to Aspiration. Scheduled for surgery sometime late June or early July, Brooklynn had a choking spell in which she turned blue on April 22, 2010 and was immediately re-admitted to Egleston Childrens Hospital once again.
  • April 26, 2010 Brooklynn was taken to the operating room for a Nissen Fundoplication to prevent reflux and hopefully cure her aspiration issues. This thankfully was completed laproscopically. Brooklynn was discharged 2.5 weeks later.
  • During her inpatient stay at Egleston, A spinal ultrasound with a follow up MRI was completed per our request which showed an abnormally low lying spinal cord. A inpatient consult was completed with the Neurosurgeon and was decided, although aruguable, due to her syndrome, tethered spinal cord surgery would be later performed to increase her chances of normal development.
  • After her discharge, Brooklynn was taken to Chattanooga, TN to meet RTS specialist and genetics doctor, Dr. Cathy Stevens. During her assessment, part of Dr. Stevens finding showed either a dislocated or missing left knee cap. An appointment was made immediately after to meet with the Emory Orthopedist once again.
  • After meeting with the Orthopedist, an Ultrasound was completed at Egleston on her left knee. We've just received the results. Her left knee cap is smaller than the right one and dislocated. This will require knee reconstruction surgery scheduled on September 22, 2010.
  • Surgery was completed on November 3, 2010 at Egleston Childrens Hospital on her tethered cord and her dislocated left patella. The neurosurgeon completed the laminectomy to release her tethered cord first. Everything went smooth. The orthopaedic surgeon went next to repair her dislocated left patella. After going in, he realized her left leg was a little more difficult than expected and her incision was rather large. Post surgery she was in a full leg cast for 6 weeks and now continues to be in a KAFO for approx. 20 hours per day. He completed the surgery, but there is no guaruntee that her patella will remain in place due to her low muscle tone and a higher probability to dislocate again. So far everything has been fine and she is healing well, although slow. She continues physical therapy 2 days per week to learn how to use her legs and walk. Her therapist is also using E-Stim therapy on her left knee to help wake up those muscles that have been sleeping since surgery and get her leg moving again. Lastly, her general surgeon went in the OR to repair the granulation tissue surrounding her feeding tube site. After repeated efforts of trying to rid the granulation tissue, this WORKED! Yay! No more mess! All in all, her day spent in the OR was a huge success. I loved that all 3 surgeons were able to work together to keep her from having to repeat going under anesthesia more than she has to. All together she spent about 7 hours in the operating room that day and spent a total of 3 days inpatient..which was a shock! She had not left the hospital in less than 17 days prior to this surgery so we were ecstatic to be able to come home so soon.

Tuesday, November 16, 2010

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.

Thursday, November 4, 2010

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! 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.


Wednesday, November 3, 2010


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.

Tuesday, October 19, 2010

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.


Thursday, August 19, 2010

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!

Wednesday, August 4, 2010

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 payed off to be a bitch. Until next time...

Friday, July 30, 2010

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 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!!!

Saturday, July 24, 2010

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

Friday, July 23, 2010

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?


Tuesday, July 13, 2010

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, 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.

Wednesday, July 7, 2010

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.

Friday, July 2, 2010

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

Friday, June 4, 2010

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