Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Kylie B. UPDATE: 9-15-08 Today we had an appt at Rheumatology for Kylie. We received the news we wanted to hear which is that she doesnt have an autoimmune disorder or rheumatoid arthritis. They believe the pain she is having is mechanical to the way she is walking. They prescribed her Naproxen(aleve) for her to take and if she continues taking this 2 times a day we'll have to return in 2 months so they can do lab work on her. Her appt for orthopedics is in December so we shall see what her orthopedist wants to do. He felt as though it was nothing on their end and Rheumatology basically said to us it is. We know they don't brace as much as they have back in the day but we are hoping to hear whether she can have some type of insole put in her shoes or braces. We dont want her to continue in pain until she is 8 yrs old and then for ortho to decide to do something. She is 38lbs and 39 1/2 ". UPDATE: 2-22-08 a nervous momma already . . . Kylie has her annual cardiology appointment coming up this friday and boy does she know it. She says "heart doc" and points to her chest, she can't say her doctors name to well :) We used to go every 6 months but she hasn't seen the cardiologist for 18 months since at her last appt they wanted to start spacing them out. They are going to be doing a repeat EKG (ECHO isn't til she hits school age) to make sure her pulmonary valve isn't squeezing shut and to check on her Atrial Septal to make sure it is either closing or that it has not gotten bigger. I will keep you all posted! UPDATE: 10-19-07 Kylie's first day started as fun until it was time to leave the apartment. Jacob was all upset that sissy wasn't coming home by asking, Will my sissy be home later?? When Kylie came home I asked her how her day was and she responded by blowing bubbles and then she began singing happy and you know it. Come to find out, they did blow bubbles today, did an art project and they sang songs but not that particular one :) She even sat for circle time. They went out on the playground where she played ball and it had rolled off the playground on to the road and she didnt flinch to walk onto the road. She stopped in her tracks and the teachers got the ball for her! amazing! She had a very good first day and asked for mom twice but that was about it, I was nervous as heck, LOL. UPDATE: 9-27-07 Ky's behaviorist mentioned something this afternoon about wraparound services (TSS etc) and Ive been upset ever since, I dont know why Im upset but I guess Im just scared about having more people come in and out of my home to work with my daughter, my home is already a revolving door. Her behaviorist is still gonna work with her but she is going to help me next week with the paperwork to get the ball rolling so to speak. It's been 8 months and she still has yet to be put in a preschool because they have it in their crazy heads to send her to west chester for school UPDATE: 9-7-07 Yeah so we are back to square 1 again with Kylie, just our luck when it comes to things going smoothly. The psychologist cant fit us in to her schedule since she is only in the office 2 days a week and those 2 days are the busiest for Kylie. So now we are gonna wait til the 18th and see what her behaviorist and education teacher can do for her. UPDATE: 8-30-07 Kylie seen her new specialist today and she is very nice and informative :) She would like to see Kylie again, which will be after labor day. While she cant give a def. diagnosis because there is sooo many directions to go with her(Kylie), she would like to work with her and us to help her. She gave me some suggestions awhile and said to keep up what I have been doing with her (Pecs), (What I'm working for pictures) & (Picture Schedule - thanx Shannon). UPDATE: 9-14-06 TODAY WE CELEBRATE KYLIE'S 2 YEAR HEART ANNIVERSARY!!!!! Kylie is a really lively, happy little girl. God couldn't have picked a better fighter and survivor. She's too young to know what is wrong with her heart. At 6 AM we arrived at the hospital for registration and admissions. Because on September 14th, 2004, at 5 months of age Kylie underwent a cath procedure called a Balloon Valvuloplasty. We spent the early morning waiting for Kylie to be taken into the cath lab because little miss needed more night night medicine in her because of fighting it. She was finally taken from my arms into the nurses around 8-9 AM. The team was fantastic, assuring us that this was something they all did all the time, I was trying to be very understanding and with my emotions everywhere I said "that it's not my baby all the time". They gave us a pager, and said they would page us when the procedure was finished so her cardiologist could speak with us. So that was our step back in history and NOW WE FOCUS ON CELEBRATING HER 2 YEAR HEART ANNIVERSARY AND WHAT A BEAUTIFUL SURVIVOR WE'VE BEEN BLESSED WITH. UPDATE: 8-28-06 I have such great news!! Dr. Foker has increased the traction on the sutures for the last couple of days and he said that Kylie's gap is under 2 cm now... already! It's funny how it seemed like we were never going to get to this point and now it's all happening so fast. Kylie's lungs are improving everyday.. they showed Chrissy her x-rays and showed her how removing the fistula has iliminated the secretions from her lungs so there is no need for the repogal anymore. That's right NO MORE REPOGAL!!! Now her lungs are going to get stronger and healthier everyday. Also, Kylie's primary nurse, Karen, told Christina there was no reason at all that Kylie should come home with oxygen. She is going to be tube free! She will, however, come home with her g-tube, but that is only temporary until she is able to eat 100% and get the nutrition she needs without it. Isn't that the best news! It's all going to get better now. I'm praying that my girls will be home by Thanksgiving. Wouldn't that be the best blessing ever? Well, I'm off to the store. I'll report back soon. Love, Tonda :) UPDATE: 8-17-06 Hello Everyone!!!!!! Or as Kylie likes to say Hiiiiiiiii :) We're all doing well. Therapy is still in full effect for Kylie and she is doing well. She has her moments of regression(darn sensory). Her speech is phenomenal. It's picking up really well. Both kids actually are starting to move along in the speech dept., about time for Jacob :) Their words pop out when you least expect it, same with what Kylie says lol Jacob is off from school until Sept. He really misses it! But at the end of August we will get the opportunity to see his new classroom since their old one has to move out of the current elementary school to make room for the bigger kids. We are desperately in the potty training mode, lol. Thomas plays a huge impact on that, lol. UPDATE: 8-3-06 Today during Physical Therapy Kylie was seen by a representative with an orthotics and prosthetics company and we are in the process of getting Kylie reverse-last shoes. She has what is called forefoot adductus. With the shoes, hopefully surgery wont be needed in the future to correct her feet. I was soooooo glad someone took the time to look and evaluate her unlike the orthopedic specialist at CHOP. I do not recommend the orthopedics dept. at CHOP. UPDATE: 7-20-06 I scheduled an appt for Kylie with her ped. since weve been having problems with her drinking soooo much and peeing sooo much. Tomorrow I need to take Kylie to get blood drawn. She is 28 lbs, she gained about 10 oz. At this point Im glad to hear she gained SOME weight. Except she's still on a line, and hasnt moved much, so once we get the blood work done and her pediatrician's office gets results we should know what is going on. It should be 24 hours after we get the work done he should get results and call us. But if we dont hear from him we should call him and then go from there. With coming back in and discussing what is going on. He seemed really concerned as much as us. Some of her specialists didnt send reports to his office about what they found at their visits with her. He kinda scared me when he asked when she goes back to the heart doctors and the genetic team. There's sooo much going on that I just felt like giving the short version since it is too much to type. So that is what is going on. UPDATE: 6-15-06 Well, today was our genetic appt for both kids. Instead of doing the DNA swab test like they did for Kylie they decided to do blood work on Jacob, and Kylie also received blood work. In 2-3 weeks we should know something and then I have to schedule the kids to see the endocrinologist to see what's next. So yes, we have yet another specialist to visit. The gene PTPN-11 is the marker they found that gave Kylie the diagnose of Noonans but there is also another gene mutation found that they don?t see that often so they are going to discuss this with their department and see if they want to better research into this as well. The pain she may grow out of but if she doesn?t in a year then we should schedule through them to see another orthopedic specialist and they could possibly find us one outside of CHOP if we wanted too. Also for if any reason her therapy gets stopped, I was told to wave the paper from their dept that says about her having Noonans and she should continue getting services. We were also given the different growth curve they use UPDATE: 5-25-06 Kylie has been having pain in her legs for the past couple weeks. I put a call into her cardiologist. Kylie's cardiologist said its hard for her to be sure what is going on with her legs. It might be something related to her peripheral circulation. She will definitely talk to us more about it on Friday so she can get more details. I will keep you updated! UPDATE: 5-18-06 KYLIE IS NOW BEING RESCHEDULED SINCE HER CARDIOLOGIST FORGOT ABOUT AN UPCOMING CONFERENCE :( I WAS SOOO HOPING SHE WOULD HAVE HER APPT SINCE THE REFERRAL WAS SENT AND EVERYTHING BUT THAT DOESNT LOOK LIKE THE CASE. HER APPT. IS SCHEDULED FOR NEXT FRIDAY!!!!! UPDATE: 5-11-06 Our genetic appt. is set for the middle of June for both kids. Jacob will be tested for Noonans at this appt. and they will also go over everything about Noonans with us, etc. UPDATE: 5-4-06 Kylie has been a major grump and I have no idea why. I think the pain in her legs are bothering her and nobody has any advice etc. Her PT thinks she may have tendinitis. So she recommended I try things for 3-4 days and to let her know. We went to the playground on Sunday instead of the walk since we promised the kids to the playground Saturday and didnt get there because spending time at my parents and by the time we left there they were asleep in the car, anyways on with it lol, I thought Ky was going to have a heart attack. She walked a mile(well it seemed like that) from the playground across to a soccer field. Then walking back she was huffing and puffing and taking breaks. Talk about giving me a heart attack as well. I know they want her to be active as possible but my goodness. She is a deteremined little girl!!!!! And then yesterday Jacob went to visit the elementary school where his preschool is and he stunned us all. He went right in and was playing with everyone. It was only about a half an hour we were there and he didnt want to leave!!!! He's sooo excited to go :) Now everytime we pass by a school, you hear him in the back going "oh oh", lol. One of the assistants I even know. She used to work at the tech school I used to go to :) I finally got the report in the mail from when he was evaluated from the developmental pedi. They list him as PDD and then she put some recommendations on the back that when we go back to the geneticists to have them test for a medical investigation for etiology (cause) of PDD/Autsim: Fragile X(molecular DNA prebe), routine karyotype(chromosome analysis) and FISH 22 probe. Basically just continue giving him his therapies. UPDATE: 4-20-06 Persistants pays off! KYLIE IS GOING TO THE SENSORY CLINIC, woo hoo! Im sooo overly excited. I cant wait to see what kinds of things they will do with her and for her :) UPDATE: 4-13-06 The word is Kylie's sensory issues are getting worse. I feel we are at a stand still with Kylie. Humming noise of a light stops her in her tracks, going outside stops her from walking, touching is a big problem. Since birth, has rocked her head and actually her body, all the time, day or night, unless she is sleeping, but to get to sleep she has to rock. We had managed to put that behavior under some control but now it?s like she reset herself and is back and worse than ever. She?s starting to get brushes on her knees because of the carpet and rocking sooo much. Sometimes it seems like she is having leg pain because she will scream and pull her legs for no reason. She also has to smell quite a few things, especially all food that goes into her mouth. Stuffs food in her mouth, jugs her drinks like she is in a contest. We did manage to overcome her hyperactive gag reflex she had. Kylie doesnt know how to interpretate the world around her. In stores she will rock and start singing to try and soothe herself but then she will totally break down. She gets brushed every 2 hours and sometimes I will brush 4x a day as part of her ?Sensory Diet?.No word yet if she will actually go to a clinic for intensive work. UPDATE: 4-6-06 Let me tell ya. I am sooo furious with our pediatrician's office that the next time a referral has to be faxed Im demanding to have it in my hand so I can be sure the specialist receives it. We drive to Kylie's appointment, check in and they dont have her referral. The stupid office put the wrong provider code on and it delayed us. So once that got straigten out with crying and screaming from the kids, Kylie was then called in. She did good for the first half and then just fell apart. She is to go back in May to have hearing done on her left ear again because it's showing inconsistent. They said it could be due to wax but they want to be sure everything is checking out A OK. UPDATE: 3-2-06 Kylie is on a Sensory Diet, no not meaning food. It is more a regiment of things that you can do at home to help them with their sensory issues. Things like brushing, joint compressions, jumping on her "peanut ball", belly on a ball, pushing heavy things.....etc. It has really helped her. She gets brushed every 2 hours and we have noticed a tremendous change in her :) She is making great strides. UPDATE: 1-26-06 1/26/2006 - Well, I decided Im NOT putting Kylie through torture for this skeletal survey. Im done with all testing on these kids. Not one doctor can focus on the good things that these kids do and Im starting to get pissed! 1/25/2006 - Well, Kylie had the genetic testing for Noonans. They did a swab test and we'll know in 6-8 weeks. The genetics dept isnt too sure she has Noonans and thinks it may be Cleidocranial dysostosis. To learn more about this you can click here She'll have to go for a skeletal x-ray and Im in the process of scheduling it so this is where we are at right now. A waiting game. UPDATE: 12-29-05 We had a good Christmas and Birthday. My mom even made me cry, lol. She got Kylie a shirt from Saving Little Hearts that says "My heart was fixed but I've always been perfect". UPDATE: 12-21-05 Well, I cant imagine how excited this women must of been when she left our home :) Well, Jacob was evaluated by the psychologist and it looks like he may have autism, not a severe case though. He is going to see a developmental pediatrician sometime at the end of January at the Intermediate Unit to see what she thinks, we'll go over the things the psychologist seen today with Jacob. They are gonna call to schedule and I dont have to pay for that or anything. He would be seeing someone from CHOP. Im glad Jacob finally has a diagnosis!!! UPDATE: 12-8-05 The insurance is now straightened out which makes "mommy" excited and not sooo stressed out now, lol. Let's see what else, the genetic testing is scheduled for the end of January. They called to do it today but it was too much and we would've never made it down there in time because of it being therapy day today plus they wouldnt have had any information that they needed. But at least we have a date scheduled and time. UPDATE: 11-18-05 Yesterday was such a beautiful day out. In the evening, the sky was pink! We thought of Kylie's heart angel Avery visiting us because Kylie would not go down for a nap, lol. Today was another beautiful day out until the yukky rain moved in. Therapy is going for the kids. Jacob has learned to say . . . Yes, No, Bubbles, Dada, Mama, Oh, This, That. He's been showing some improvement. Making sounds and doing more signing, which is great. Kylie on the other hand likes to be a tough cookie with her gals. Im scheduling an appointment for her to see an orthropedic doctor since the therapists asked me to schedule one and see what they say about her sitting in the "W" position. She has to get out of this position but we havent been fully successful. Today was somewhat calming as soon as we put the "metronome" on we were able to work with her. All in all everyone is doing well and we hope everyone out there is as well! UPDATE: 11-12-05 I guess you could call it good . . . Kylie was seen by 2 cardiologists today, Dr Pinto and Dr Donner and they feel as though she should have genetic testing for Noonans. Here is what Noonans is: Noonan syndrome is a condition that can affect the heart, growth, and mental and physical development. It is generally recognized by a heart valve defect present at birth, short stature, droopy and wide set eyes, and low set ears. Features that are often present include low hairline in the neck region, striking blue or grey eyes, curly hair, and chest deformities. Affected children may have behavioral and learning problems. The incidence is between 1 in 1000 to 2500 children. The cardiologists would like to see Kylie again in 6 mos and do an echocardiogram. So she's still being seen on an every 6 month basis. We'll know in about a month or 2 when she is going in for the genetic testing. I guess it was a good visit considering the doctors at Hershey never mentioned something like this. Thank you all for the prayers and thoughts! This meant sooo much to us and helped settle me down. It can be a scary situation. And angel was sent today and didnt screw up! Thank you "upstairs"! UPDATE: 11-9-05 Today, Kylie received PT and her PT noticed it as well, but Kylie's feet started getting puffy and turning purple. Kylie was walking and standing. You cant tell she is in distress or anything she's happy but Im worried as heck. Well, called the heart center for CHOP, because that is where she'll be going when she has her first visit in Jan. Well, the nurse there tells me she cant tell me anything because Kylie hasnt been seen by them yet and she hates to give me an answer so she tells me that I should see her pediatrician and see what they think since they have seen Kylie already. Tomorrow we have an appointment there for her anyways, so I am going to mention it while we are there. Other heart parents Ive been talking to say "It is possible that she is not getting enough blood through the stenotic pulmonary artery to get to her lungs to get enough oxygenated blood out to all her extremities plus with her still having the ASD there" I keep saying if it is a heart problem what the heck is the pediatrician gonna do but tell us to go to CHOP. Urghhh! I will post when we come home tomorrow for the pediatrician. God, I hate to see how they handle a call when ya have an extreme emergency. Boy, do we miss going to Hershey. The staff was alot nicer when you called and didnt give an attitude or sounded like they had an attitude. UPDATE: 10-26-05 The kids today had OT and Jacob had an education teacher. They both love the teachers. Next week Kylie will get OT and PT. Jacob will get the teacher and OT. And we are still awaiting to hear who will be the speech therapist. That's it for now! UPDATE: 10-25-05 Therapy starts this Wednesday for OT for both kids. Next week, PT starts for Kylie. I think the "education teacher" will begin on Nov 1st from what I understand. Been keeping notes of what happens on what days, lol. The kids are doing well! They take their turns being stinkers, lol. UPDATE: 10-20-05 Kylie had her checkup yesterday. She is 27.8 lbs and 31 1/2 inches long. She received 3 shots altogether counting the flu shot. I was shocked how well she did with the new doctor usually she flips out but she was calm as an angel and even happy to see the new doctor, whoa! lol. Jacob wont go for an appt. just yet, Im waiting for his insurance card to come but I know it will be a battle when he goes for his checkup, ahhh! UPDATE: 10-15-05 KYLIE WALKED ! ! ! YES, YOU READ THIS CORRECTLY. HOORAY!!!!! I said to Justin this morning I wish she would walk soon and she took steps from the loveseat to Jacob. And just now, she walked from where the kitchen starts to the end of the loveseat. When I picked her up she stood and was trying to walk again. It's about time, way to go babygirl!!! UPDATE: 9-23-05 Kylie said another word today. She said to Jacob "Mine". hehehe Now Jacob is trying to say it as well UPDATE: 9-22-05 Kylie has been quite the little stinker in the family. She stands in front of the wall so she can see her shadow and she will lean up and down and move her hands like she is doing ballet. It's sooo cute and funny to watch. She has also learned to say No to Jacob. If he comes over to take something from her she will put her hand out and say Nooooo. They both say wiggle wiggle wiggle, Ut Oh, and No. They still do a lot of jibberish. Jacob has become such a helper with alot of things and it's nice to have him help when he doesnt get stuff everywhere hehe. Im in the process of getting their records sent to their new pediatrician so Kylie can get her shots next month since she is due and we'll see when she needs to get the flu shot as well. Jacob will need to get his 3 year shots in December and will also get the flu shot because of Kylie. That's it for now, will keep you posted! UPDATE: 7-1-05 Kylie is 23lbs 7oz and 29 inches long. She received 3 shots today, ouchie. She will go back in 3 mos. It was a good baby checkup :) HAVE A NICE HOLIDAY EVERYONE!!! UPDATE: 5-20-05 My daughter was evaluated back on March 30th the day before her first birthday for therapy. I was told she qualifies for therapy. I was told she would receive therapy and I would receive paper work, which I'm still waiting on and then I was told there is a waiting list. Then I go and read the paper this morning and it says "Two of the Gosselin sextuplets, Collin and Alexis, receive physical therapy through the Easter Seals." I don't know if they went through the same program I did but I'm a little upset. My daughter has a medical condition which is probably why she is delayed and she is put on a waiting list and has to wait for such therapy. I don't understand it. UPDATE: 5-1-05 Hooray, We did it! Today was perfect weather for the 5.5 mile walk. Jacob was the ambassador for the "whole" walk this year at Reading Fairgrounds!!! We met another ambassador for a family team called Team Reading Pediatrics. Jacob led our family, while sitting in his stroller, and hubby pushed him. While I pushed Kylie. We crossed the finish line, with a lot of "HOORAYS" "YOU DID IT" and Jacob gave the community director Jasmine a high five it was sooo cute. He was hungry for the hot dogs they were serving hehehe Our team raised $326.75! It would have been more, but most of our sponsors were splitting their donations beween us & the MS Walk that was held today. Can't wait for next year!!! UPDATE: 4-25-05 What a shock today. Miss Kylie stood at grammy and pappy's house today. She just pulled herself up by holding on to the coffee table. It was a 5 min stand before falling over. Yeah :) UPDATE: 4-21-05 Kylie had blood taken today. Boy was she a little mad. We have to go back tomorrow because of not being able to get the urinalysis(sp?) there. I was given a bag and a cup to collect and bring it in. I will post when we know what the results are. Miss Kylie has an allergy to the sun. She goes for blood work tomorrow to see if she also has a blood disorder. She has something like Petechiae (see below) on her after she is in the shade for awhile after being in the sun. So now if she goes outside she has to wear 50 or higher of sun screen and limit time in the sun. Poor Kylie, what next. Petechiae (pronounced pet-tea-key-eye) are tiny, flat red or purple spots in the skin or lining of the mouth caused by abnormal bleeding from small blood vessels that have broken close to the skin or the surface of a mucous membrane. Petechiae may appear rapidly over a few hours. 4/19/2005 - Kylie will be going for a test this afternoon to see if she is allergic to the sun. They asked if she breaks out when she has sunscreen on and I said I didn't try it because I didn't know what it would do to her skin. For only a couple minutes she breaks out on the parts of her body that her skin is exposed to the sun, so they are going to do a test and then refer her to someone like an allergist. urghhh! 4/18/2005 - We think Kylie might have something called heat induced urticaria. Everytime she is out in the sun she breaks out. I'm waiting to see what the pediatricians have to say. Poor lil girl UPDATED: 2-26-05 I just received some good news. I started crying when the nurse read the results to me. Kylie's MRI results for her sacral dimple came back normal. It is just a dimple. She will have someone come in our home to give her physical therapy. Ahhhhh, sigh of relief. Hugs Katie UPDATED: 2-17-05 I found some more information about Kylie's MRI for tomorrow. She has something called a sacral dimple, and what they are looking for is to see if she has something called occult spina bifida. This site explains a little more and I found it informative since it wasn't gone over with me alot at her appointment at the pediatricians office. Here is the site: http://www.labs.ibt.tamhsc.edu/mitchell/pdfs/newsletter4.pdf Information on Sacral Dimple and OSB Hugs Katie ADDED: 2-14-05 Kylie is 11 months old!!!!!! Condition=CHD-Pulmonary Stenosis & Atrial Septal Comments=Kylie was delivered into our lives, into our hands, into our hearts! We are truly blessed! We Love You!! We wish you carefree days of bug discovering, puddle jumping, belly laughs, goodnite stories & wishing stars. We are asking for prayers for Kylie because on Feb 18th she will go to Hershey Medical Center for a sedated MRI of her spine. She has what they call a "skin tag/dimple" which makes it look like she has a second rectum. They are doing an MRI to look if this is what is preventing her from doing further developmental skills. If the results come back positive we will meet with a surgeon and go over what will be done. We were already told by her pediatrician what the procedure is and it is what is called "releasing the spine" then after she would have the procedure done she would have physical therapy. If the results come back negative. We will still be applying for physical therapy for her. "The heart has reasons that reason cannot know." Valentine's Day, Feb. 14, is Congenital Heart Defect Awareness Day. (It's also mommy and daddy's wedding anniversary)