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, 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.