tag:blogger.com,1999:blog-59345008691331083212024-03-05T00:05:51.911-05:00The Edmunds FamilyJeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.comBlogger73125tag:blogger.com,1999:blog-5934500869133108321.post-83159060730851187012014-04-25T10:24:00.002-04:002014-04-25T12:24:09.210-04:00Duke Appointment Yesterday, we saw the neuro-ophthamologist at Duke. It was a long 3 hrs there and that didn't even include everything they had intended to do. That being said, Kylee did fairly well all things considered. It takes 3 of us holding her down just to get a good look at her eyes. And bless her, she squeezes her eyes shut as tight as possible. <br />
Dr El-Dairi is supposed to be well knowledgeable about IIH and she was very nice, but I think I came away from the appointment more frustrated and confused. Mostly, I've been having curse Down syndrome moments. Don't take it the wrong way, but because of Kylee's inability to fully describe how she is feeling, it makes the whole IIH and treatment more difficult. I wouldn't change her because I feel her Ds adds something so heartwarming to her personality. Everywhere we go, she has to interact with others, saying hi, giving hugs, etc. There are plenty other reasons why as well. Typical IHers have headaches which makes knowing how the medication is working a lot easier. Since her first visit to the ophthamologist when the optic nerve swelling was noticed, it has always been said that Kylee doesn't display typical IH symptoms such as headaches, nausea, etc. I have always thought that Kylee and others with Ds have a much higher pain tolerance and this would make sense as to why Kylee doesn't act in pain lately.Going to the first neurologist, it was noted just that-no headaches, nausea or anything. Nothing was taken into the consideration some of the changes I had noted like a lot of ear rubbing (with no ear infections diagnosed). People with IIH will tell you they often experience "whoosing" noises in ears. Kylee has also had her swallowing difficulties of thin liquids reoccur. She also has reflux to go with it as well. Whether or not it goes with the IH, I don't know, but it started around the same time as her eye change was noticed. Also, Kylee has dark circles under her eyes. It has always been chalked up to allergies. I don't blame her pediatrician or ENT for thinking that because that is what it looks like. However, bringing it up to the neurologist and neuro-ophthamologist, as well as trying allergy meds and no signs of allergies(congestion, sneezing, watery eyes, nothing) it should be noted. Especially, when I have said others with IH have noticed it as well when there pressures were up and when Kylee had her spinal tap, it had went away for a week. Also, Kylee grinds her teeth a lot more and will pull at her hair at night. Kylee has always been a teeth grinder, but it seems to be worse at certain times. She also has low iron and there may be a correlation to that. All these things and given the fact that her optic nerves were swollen and she had higher pressures with her spinal tap would make sense to me that there is a connection of some. Ok, back to her appointment yesterday. The Dr felt that Kylee has some features of false appearance of swollen optic nerves, but also had features of true swollen optic nerves. False swollen optic nerves can be more common in the Ds population in general. Typically, the Ds population have different looking optic nerves anyways. Also, she said new criteria defines high opening pressures in pediatrics is now 25(Kylee's was 24), which is one reason for thinking false swollen optic nerves. But she also said given the fact that the ophthamologist previously noted the appearance of swollen optic nerves and the fact that her protein levels were low in her CSF(can be a factor in IIH,) she would be noted to have features of swollen optic nerves. Basically, she is seeing Kylee mid-treatment and she doesn't know what Kylee's optic nerves looked like before so she can't say definitively if she has true papilledema (swollen optic nerves). She wanted to take photographs of her eyes, but Kylee won't even sit still to have them just examined so we will have to wait until she goes under anesthesia in August for hip surgery to get pictures then. Her plan is to look at the photos, take her off of diamox, then see her in her office to see what her optic nerves look like. The only thing I don't like about this situation is if the diamox truly helps her and take her off of it while after she has hip surgery and is in a full body cast, not having full movement, she may be more irritated. Dr El-Dairi did feel she wasn't on a true therapeutic dose of diamox at this point if she does have IIH. Going back to the whole no complaints of headaches, nausea, it seems that her previous neurologist and this neuro-ophthamologist want to base how well Kylee is doing on what her optic nerves look like. While I understand she isn't your typical IIH patient outwardly, papilledema isn't always present in IIH. In fact, it was noted in the Dr notes yesterday that headaches, nausea and vomiting aren't exclusion criteria in saying she doesn't have IIH. Confused yet? She did at least say that she hasn't had any patients complain about dark circles and she hasn't seen it in literature, but that doesn't mean it isn't possible. My thinking is most patients can describe their symptoms so they wouldn't really need to mention much about the dark circles. One other thing she did mention that was confusing to me is the eye crossing Kylee had at the start of this is not neurological. I thought I read different. See why I am confused:) Anyways, we will just continue seeing the new neurologist(which we would anyways), continue giving diamox and check labs to make sure she is tolerating it ok, wait on our sleep study, follow back up with neurologist in 2 months and follow up with either ophthamologist or neuro-ophthamologist after photographs are taken in August. We have an appointment with the gi doctor and she seems to be doing well on the prevacid. She had some reflux symptoms when everything started, but we limited certain foods. Now with taking the diamox, it can cause reflux and as well as the increased fluid intake ( which has been everything possible we can give her to drink,) but it has been mostly orange juice, so we started her on the prevacid. Then we also follow up with endocrinologist to see where she is at with her vitamin d levels, etc. Again, if you read all this jumbled mess, thanks!Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com0tag:blogger.com,1999:blog-5934500869133108321.post-86056439932613413112014-04-23T15:55:00.000-04:002014-04-23T16:10:25.478-04:00Idiopathic Intracranial Hypertension Since my last post, we actually got her official diagnosis. She has idiopathic intracranial hypertension (IIH), also called Pseudotumor cerebri (PTC). Kylee had her spinal tap(lumbar puncture) on march 10th. She did really well with it. Of course she was sedated for this procedure. She has become well aware of what goes on now when we go anywhere that she has to have anesthesia and does not like to be bothered with vitals being taken, the gas mask, or bandages. Thankfully, she was the only child there so the child life specialist was able to entertain her. She came out of anesthesia the same as always -cranky, but fine as soon as we leave. She seemed to be sore in her lower back area for about a week. This is probably due to the fact that it looks like they had to poke her 3 times to get the cerebrospinal fluid. They do two things with the CSF. 1. They measure the opening pressure of the CSF. Normal in a child Kylee's age is about up to 20. Kylee's was slightly elevated at 24. They also send out the CSF to test for different things that may contribute to the IH. If there is a likely cause, then it is just referred to as intracranial hypertension. If there is no known cause, it is idiopathic. Anyways, they collected tubes of blood and with the blood samples and CSF, they tested to see if there were any viral infections, Lupus, certain vitamin deficiencies or excess vitamins and a few other things that can be linked to IH. The only abnormality that showed up was elevated parathyroid hormone. A visit to the endocrinologist the next day resulted in another blood draw and urine testing of calcium, vitamin d, phosphorus and kidney function. With elevated parathyroid hormone, it can be a result of different reasons. Kylee's vitamin d showed to be low, so we started her on vitamin d supplements. There doesn't seem to be any link of low vitamin d and IH unless it has to do with abnormal calcium levels which Kylee's calcium levels were within normal limits. We are waiting on having another sleep study to check for sleep apnea. Sleep apnea is very common in the Ds population and there has shown to be a link with IH and sleep apnea. Kylee was diagnosed with sleep apnea over a year ago and at that time her tonsils and adenoids were removed which resolved the apnea. She has been sleeping terribly for a few months now, which could be apnea or it could be from the IH. In a way, it would be nice if she had apnea. Take care of the apnea and if that is possibly contributing to the IH, then hopefully it would put her into remission and lessen her chances of it reoccurring. She started on a medication called diamox on march 19th. That is supposed to reduce the amount of CSF produced. Since it is a type of diuretic, it can affect your kidneys so staying well hydrated is essential. This has been quite the task in getting her to drink enough. She gets easily frustrated with us constantly pushing a drink at her. Thankfully, I found a support group for IH and this has been very helpful in learning about IH. Unfortunately, there isn't a known cure, just medications to try to lower pressures or the options of placing a shunt. Medications or shunts can put the person into remission, but not always. While the support group has been very helpful,it has also made me aware of how little research has been conducted for IH. Also, I have seen stories from others of children having to endure pressure headaches that medications have a hard time relieving, nausea, vision disturbances, etc. It is one thing to have a headache, but when it is a child and medications don't relieve it, it is worse. And it seems that since IH is misunderstood, patients often aren't treated properly. Anyways, Kylee was seeing a neurologist that we weren't very happy with for many reasons. The hard thing with Kylee not being able to tell me how she feels and being on a medication that can affect electrolyte balance, kidneys, etc is that I have to rely on her behaviors and her physicians. When the neurologist doesn't get that Kylee is unable to communicate how she is tolerating IH and the meds, it is beyond frustrating. The medicine can lower your potassium levels since it is a type of diuretic and some of the ways to tell would be tingling in extremities. When I asked the neurologist about drawing labs to see how she was tolerating the med, her response was just that(she would have side effects such as tingling) to which I had to remind her again, she can't tell me if she is tingly, etc. If you were to google IH, you would know that a high opening pressure would be a reason to start medicine. When you have an LP, the Dr will lower the pressure back down to normal (closing pressure). CSF is constantly being replenished so just because it is brought down to"normal" it will go back up and if you have IH, it will likely go back up to being elevated. The neurologist stated in her notes that she felt strongly on not starting Kylee on medicine since her pressures were brought back down to 14. Also, if you were to google optic nerve swelling (papilledema) and IH, it doesn't always occur in IH. So, for her to talk about doing better if her papilledema is resolved is crazy. There are plenty of patients who do not have papilledema but have extreme pressure headaches and high opening pressures. Ok, rant done on this neurologist. I had a hard time getting an appointment with a different neurologist, but was able to get in with a neurologist new to a different practice. Kylee saw Dr. Wallace last Thursday and she was great. Was very thorough and explained a lot and also went over Kylee's MRI images. We increased her nighttime dose of the diamox and also started her on an iron supplement because of her low ferritin levels and that fact that she has periodic limb movements(which can be caused by low ferritin levels.) Dr Wallace referred us for a sleep study to check if the iron may be helping the plmd and check for apnea. We follow up with her in 2 months. She also gave me a slip to check her labs before her endocrinology appointment on the 12th, but if I felt she needed them sooner to do them sooner(didn't have to bug her about it like the last neurologist.) While trying to get an appointment with a different neurologist, I also made an appointment with a neuro-ophthamologist at Duke. We have a wonderful ophthamologist that Kylee has been seeing, but wanted Dr. El-Diari(neuro-ophthamologist) to check her out since she specializes in IH. An IH patient doesn't necessarily need an ophthamologist, neuro-ophthamologist and a neurologist, but considering not a lot is known about IH, I want to make sure she is getting the best care possible. Her appointment wasn't until June, but the ophthamologist that sees Kylee sent Dr El-Diari an email to see if we can get in sooner. At Kylee's last ophthalmology appointment, which is never fun because it takes 3 of us to restrain her to get a good look at her eyes, she said her papilledema is still there but is slightly better. Considering she was only on a very low dose of her meds for 3 weeks, that is at least positive. We are scheduled to see the Dr. El-Diari at duke tomorrow. Thankfully, it is spring break so Kate can stay with grandma. It takes 2hrs to get there and we were told to expect a 3-4 hr appointment! Hopefully, it won't be too traumatizing for Kylee and it is worth the drive. If you read this far, bless you cause I'm sure it is a lot of information that doesn't make much sense, but my reason for writing this is to keep track for myself as well as anyone who may be searching for IH. I'm hoping to update her outcome of tomorrows appointment sooner as well as do a post about Kylee's hip dysplasia and her hip surgery that she will be having in August. I'm not looking forward to it, but am looking forward to being able to sit next to her without feeling her hip going in and out of socket!Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com2tag:blogger.com,1999:blog-5934500869133108321.post-1637488984657760292014-03-05T11:46:00.000-05:002014-03-05T11:50:27.004-05:00Spread The Word To End The Word Today is spread the word to end the "r-word" day. Plain and simple, "retard" "retarded" or any form of "tard" is offensive to a lot of people. Pick a different word to use-there are plenty! <br />
John McGinley (Dr. Cox from scrubs) does a great job of explaining in the link below.<br />
<a href="http://m.huffpost.com/us/entry/4896444">http://m.huffpost.com/us/entry/4896444</a>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com0tag:blogger.com,1999:blog-5934500869133108321.post-65616457814009286262014-03-01T20:06:00.000-05:002014-03-04T22:06:13.260-05:00Pseudotumor Cerebri(Optic Nerve Swelling)It has been a long time since I have done a blog post, mostly because there was nothing to post about except for everyday stuff. But with all Kylee has going on I like to journal for my own records, plus like when she had heart surgery, I like to update family and friends on how things are. Lastly, it helps me to see other families' experiences and I thought our experience might help others. Back in December, Kylee had an eye Dr appointment because we noticed periodic crossing of her eyes. So, she was diagnosed with strabismus(eye crossing) which can be common in younger kids with Ds. She now sports some really cute glasses. At that appointment, it was discovered that she has bilateral optic nerve swelling (papilledema.) This is usually indicative of increased cerebrospinal fluid, which can be caused by different things. The big concern was tumors. The eye crossing, although common with Ds, can also be caused by other things. The eye Dr said we could do testing (MRI and /or spinal tap) to find out what was going on, but because she wasn't experiencing headaches, vomiting, balance issues, or irritability that she advised just waiting as the appearance of swelling could just be her normal optic nerve appearance. We opted to have the MRI done as waiting would have been way too nerve wracking and had there been any tumors, it would be better to find out asap. The MRI ruled out tumors, but did show the optic nerve swelling, as was some lesions on the grey matter in her brain. The neurologist stated that it wasn't anything to worry about, that is likely from lack of oxygen experienced at birth, during heart surgery, sleep apnea, etc. We were scheduled for a follow up MRI in 6 weeks and if anything changed we would see her sooner. Because, she didn't seem to experience any issues that would be indicative of increased cerebrospinal fluid, we would wait to do further testing. Fast forward to 6 weeks and her follow up MRI. There was some confusion as to what the radiologist was looking for on this MRI and did not make the diagnosis of optic nerve swelling, instead just reported about the lesions. Our follow up appointment with the neurologist, I questioned the optic nerve swelling and the scan did still show mild swelling. We were told based on what the eye Dr found on her exam a week later would determine whether or not the spinal tap was needed. Kylee's eye Dr was the one who told us of the confusion regarding what to look for on MRI. She still noted the swelling on her exam and contacted the radiologist to compare the 2mris. Spinal tap is set up for Monday at 8 am. While I understand confusion can happen when you deal with 2 different neurologists in the same practice, it still is frustrating that the swelling wasn't taken as seriously as it should have been. I feel bad that I didn't push for the tap sooner. Anyways, that being said, the term for what Kylee has is pseudotumor cerebri. Basically a false tumor or no known reason for the increased cerebrospinal fluid. People with Ds are said to have a higher pain tolerance and makes me wonder if she is experiencing any headaches due to it. She does occasionally pull at her hair at night, grinds her teeth more, has seemed to have ear pain with no infection and has started to have swallowing issues like she used to and /or reflux. Whether any of it is related to the increase in CSF, I don't know. The plan is to measure the pressures of the CSF and send the CSF to lab to test for anything viral, and vitamin deficiencies. From my understanding, there doesn't have to be a reason for the increase. The pressures are supposed to be at a certain range. Too high and this is what can cause the headaches, etc. The big thing is it can cause vision damage. Based on results is how we decide to proceed. Medicine is usually prescribed to decrease the amount of CSF and to follow up with eye Dr to check on the swelling. The neurologist said that it usually will run its course in 12 to 18 months. The bad thing is it can reoccur at puberty. Because of hormones, women have a higher chance of increased CSF than men. It is also more common in the Ds population, not sure on percentages though. I'm hoping that her strong, fiesty side helps after the tap. There is a small chance that she can develop a spinal tap headache. The best thing to do is lay flat. Also, caffeine helps. I don't know how a 5 yr old will stay still especially after consuming caffeine. Anyways, that is it for now. I need to do some blog revamping and I will be doing another post on her hip dysplasia.Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com0tag:blogger.com,1999:blog-5934500869133108321.post-35365304660921571162011-07-13T23:52:00.008-04:002011-07-14T00:26:54.978-04:00Blog SlackerSo, as you probably can tell, I haven't written anything on here in months. I guess I just feel our daily routine of things is not so blog-worthy. Somebody, who shall remain nameless(mom) has been pestering me to post on here. <br />
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So, what have we been up to since February. Well, for starters, Kylee turned 2 in June and she has definitely started to act like a 2 yr old. She will get mad at you if she doesn't get her own way. But, overall she is very happy most of the time. She has mad some progression in all areas. She has been walking for months now- I think since February and is getting pretty fast at it. She can climb up on the furniture and just the other day, the little stinker was up on the coffee table when I came out of the bathroom! She is getting better at steps, but since all we have are the steps on the porch, she doesn't get much time to practice. In the speech department, she is starting to make lots of sounds and say/sign words. She was signing quite a bit months ago, but stopped for awhile. Her favorite word lately, is hi. Every one we see, she has to say hi to. It is really cute. She can say bye, bath, pee(she won't pee on the potty, but she will sit on it,) Kate, mama(although she prefers to say Daddy,) pop(she does this when popping bubbles,) juice(although every food item is juice,) she will sign more and she definitely imitates lots of sounds lately. She will start occupational therapy again and we will work on some fine motor skills. Things such as coloring, proper use of utensils, etc. <br />
In the health department, knock on wood, she is doing fantastic. She just had a visit with the eye doctor and we were told that most eye issues normally seen in children with Down syndrome would likely have happened already. So, we don't need to visit her for another 18 months. We have her one year checkup with the cardiologist on Monday and then a followup with the neurologist on Tuesday. I'm expecting good news from both and with the neurologist, she really hasn't been showing any issues of her left leg bothering her. She is slowly growing and weighs 25 lbs, but I couldn't tell you how tall she is. <br />
On to Miss Kate or should I say Miss toothless. She has lost 4 teeth in the last month, 3 of those were in 4 days. She has gotten brave about pulling them out. She has been working on her Christmas list for a couple weeks now and she has about 3 pages. She is however talking about all the presents she is going to make for Kylee and our dog, Lacy. She loves Lacy and all animals and in fact today, she said, "I can't wait until I am a dog!" She is always amazing me with her wealth of knowledge. She has been naming states and knows where they are and can even list in order the states to get to NY. <br />
Last year, we had a photo shoot for this great organization that offers free photo services to children with major illnesses or disabilities. <span class="Apple-style-span" style="color: red;"> <span class="Apple-style-span" style="color: red;"><a href="http://www.inspirationthroughart.org/">www.inspirationthroughart.org</a> </span></span> Anyways, we had an amazing photographer, Melody through <a href="http://www.snookysmilesphotography.blogspot.com/"><span class="Apple-style-span" style="color: red;">Snooky Smiles</span></a> and she graciously offered her services on her own a couple of months ago. We had an amazing photo shoot consisting of Kylee and her 5 friends(all with Down syndrome) and their siblings. The children were so well behaved and Melody captured such great photos. Anyways, I will leave you with the slideshow that she put together of the kiddos and a few other pics as well.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje7B0uDc81a92zrqQlmT3tmaYDgW3bljGOA_TrdUOXghKjcBg9Ju2xdCGEvLuLKa62ARkpdZmp1yHCwpHJIIkdX-884oEXXYXBEI9EjfmeSXwbV8kqUG0aC9MYRB0WoQmzQKdjjcyKgqM/s1600/july+4.jpg" imageanchor="1"><img border="0" height="206" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje7B0uDc81a92zrqQlmT3tmaYDgW3bljGOA_TrdUOXghKjcBg9Ju2xdCGEvLuLKa62ARkpdZmp1yHCwpHJIIkdX-884oEXXYXBEI9EjfmeSXwbV8kqUG0aC9MYRB0WoQmzQKdjjcyKgqM/s320/july+4.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4RIXy2L0Sgaf12wpxypHnBb9Zi-M3NTyugAnlyVnkpCN6UNTKSFREgRuRDye-cJVJBnqF9GiOPRmFjjOH4f929w0iBqJg-3jVMtWYbl3oYOCKvZQXe6VJ08Mczmuo0B1sBsmzFK4uYJ8/s1600/003.JPG" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4RIXy2L0Sgaf12wpxypHnBb9Zi-M3NTyugAnlyVnkpCN6UNTKSFREgRuRDye-cJVJBnqF9GiOPRmFjjOH4f929w0iBqJg-3jVMtWYbl3oYOCKvZQXe6VJ08Mczmuo0B1sBsmzFK4uYJ8/s320/003.JPG" width="320" /></a></div>Kate right after her last tooth fell out and her new haircut<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJInA8asocjRUwuasl_0_DBlzdy0tuKAWX29ep744WkC7d4ANYcNvR9_Vx-MyTKajp4dTHo2Tra1rhWaLk-YDRse5NHQ2FBg5AaODVzwA_pwDZ3BAO8OqETeurdytgg4HmwVwOpNk9_TA/s1600/020.JPG" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJInA8asocjRUwuasl_0_DBlzdy0tuKAWX29ep744WkC7d4ANYcNvR9_Vx-MyTKajp4dTHo2Tra1rhWaLk-YDRse5NHQ2FBg5AaODVzwA_pwDZ3BAO8OqETeurdytgg4HmwVwOpNk9_TA/s320/020.JPG" width="320" /></a></div>This is what happens to Lacy when Kate decides she would be a good ballerina!<br />
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<iframe allowfullscreen="" frameborder="0" height="349" src="http://www.youtube.com/embed/vR8cM7jp7NA" width="505"></iframe>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com1tag:blogger.com,1999:blog-5934500869133108321.post-65668461226653389452011-02-08T22:05:00.000-05:002011-02-08T22:05:24.783-05:00Peter<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNuLyXqDA9E98_i1F0puBu_vWlDcwGDlJlKCGCyfCAW3FVN3IhwglCr5gQLnvZSOgY0PkRfixObGUgbgD6i6TiMWAVlXGcho5l37JxR_6aOvbUQ9rBUMsku0xYPQHx9PXFuS_3nE4QBIM/s1600/Peter-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNuLyXqDA9E98_i1F0puBu_vWlDcwGDlJlKCGCyfCAW3FVN3IhwglCr5gQLnvZSOgY0PkRfixObGUgbgD6i6TiMWAVlXGcho5l37JxR_6aOvbUQ9rBUMsku0xYPQHx9PXFuS_3nE4QBIM/s1600/Peter-1.jpg" /></a></div>Isn't he adorable? This sweet boy is in an orphanage in Eastern Europe and he desperately needs your help. <br />
Here is the message copied from an amazing mama of 3 boys(one of the boys is a twin and he sports the extra 21st chromosome) and a big advocate for those with Down Syndrome.... <a href="http://taylorvillethree21.blogspot.com/2011/02/urgent-update-on-peter.html">http://taylorvillethree21.blogspot.com/2011/02/urgent-update-on-peter.html</a><br />
<span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;">OK EVERYONE!!! The gorgeous little boy is </span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;">named Peter,</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"> his forever family is in the beginning stages of bringing him home. HOWEVER, we now have word that Peter has had surgery and "is not doing well". Not doing well means Peter's life is LITERALLY AT STAKE.</span><br />
<span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><br />
</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;">Peter's forever family literally does NOT have the luxury of time to raise funds for him. Patti is doing that RIGHT NOW. As we speak his life hangs in the balance and YOU can make all the difference in the world.</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"> </span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><b><a href="http://babynumber10.blogspot.com/" style="color: #950055; text-decoration: none;">DONATE, DONATE ANYTHING YOU CAN</a>.</b></span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"> </span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;">His family wants him home NOW, but they need YOUR help....please don't delay.</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><br />
</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><br />
</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;">PRAY AS HARD AS YOU CAN. SHARE WITH EVERYONE YOU KNOW. PRAY GOD CONTROLS HIS PULMONARY HYPERTENSION (I believe that is the main issue because the RR site says he has a high degree of pulmonary hypertension) THIS FAMILY NEEDS TO GET HIM HOME AND LET THE DOCTORS HERE TREAT HIM. NOW.</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><br />
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</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;">There is</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"> </span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><a href="http://babynumber10.blogspot.com/" style="color: #950055; text-decoration: none;">$11,381.50</a></span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"> </span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;">in his fund right now. We have until FRIDAY FEBRUARY 11th, 2010 at midnight to save him. Patti is graciously extending his fundraiser by one day. "One day? Just one day?", you may ask. Well this is what I have to say to that question,</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"> </span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><b>"THAT ONE day could literally be the day that saves Peter's life."</b></span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><br />
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</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><b><a href="http://babynumber10.blogspot.com/2011/01/pure-love-giveaway.html" style="color: #950055; text-decoration: none;">PURE LOVE GIVEAWAY</a></b></span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"> </span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><-----click that link and it will take you to the page to donate, just let the sidebar load and you can donate via Paypal right there. OR Mail a check out ASAP to</span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"> </span><span class="Apple-style-span" style="color: #953f00; font-family: 'Times New Roman', Times, FreeSerif, serif; font-size: 16px; font-style: italic; line-height: 22px;"><b>Reece's Rainbow<br />
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P.O. Box 4024<br />
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Gaithersburg, MD 20885</b></span>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com1tag:blogger.com,1999:blog-5934500869133108321.post-38814419328652731012011-02-05T22:08:00.001-05:002011-02-05T22:12:37.267-05:00Auditioning for Blue Man Group<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFGdg_QwhPsDyQ_zl6bAelYYLxvKRcs4zTGa8Bb7JXt9fEcp35bmKJROTnD7ou6ZvCddH3yziZmP9_R3kRQ1rJt5wdLX1S2FZYmip92L3TxqOJ4-5oRIGnsJW4u5VOsgMTOjtpV60QsGE/s1600/032.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFGdg_QwhPsDyQ_zl6bAelYYLxvKRcs4zTGa8Bb7JXt9fEcp35bmKJROTnD7ou6ZvCddH3yziZmP9_R3kRQ1rJt5wdLX1S2FZYmip92L3TxqOJ4-5oRIGnsJW4u5VOsgMTOjtpV60QsGE/s320/032.JPG" width="320" /></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL9SA_TYKuZrtZbb8X0w0YJyJ0he8NqT6oUwRUdE8MKsh_R1sz0PZuV_xK__sxDCjbY4VmWMLokKLn_aeun3zykIsVZXcJVYKlBUAXkJgHWZKNUPPpjDWxttW15zAusZXHh30u-4m6dR0/s1600/056.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL9SA_TYKuZrtZbb8X0w0YJyJ0he8NqT6oUwRUdE8MKsh_R1sz0PZuV_xK__sxDCjbY4VmWMLokKLn_aeun3zykIsVZXcJVYKlBUAXkJgHWZKNUPPpjDWxttW15zAusZXHh30u-4m6dR0/s320/056.JPG" width="320" /></a></div>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com4tag:blogger.com,1999:blog-5934500869133108321.post-24875817386097426782011-02-04T01:25:00.001-05:002011-02-04T01:28:22.282-05:00Happy 6th Birthday Kate!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUTNZsi7zeAV65nonQFcm_H53jO0vwnhpqfb0FFw19cWaJdnwBkkqXAj6_qZ-Awl55eMIhILBqe338zZPXzkWVLHrqpM1rm0Xpyyv5izHmZhYX4YMXEI3gZ-zkvvNQC-FXnGHeouZ8E_k/s1600/img004.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUTNZsi7zeAV65nonQFcm_H53jO0vwnhpqfb0FFw19cWaJdnwBkkqXAj6_qZ-Awl55eMIhILBqe338zZPXzkWVLHrqpM1rm0Xpyyv5izHmZhYX4YMXEI3gZ-zkvvNQC-FXnGHeouZ8E_k/s320/img004.jpg" width="226" /></a></div>It is hard to believe how fast the years have gone by. Kate has turned into such a beautiful little girl. I say little because even though she has gotten so big and she insists that she is not little anymore, she still is my little girl. I don't want her to grow up! Kate is quite the character, with her great imagination. I love watching her play because she always comes up with the funniest things. Just the other day,she told me her pet toy mouse has Down Syndrome and has a hard time hearing, but that it is ok. <br />
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This year she started off at the same school she had been at when she was in preschool. Well then, things got rough financially, so we decided to pull her out and homeschool for the rest of the year as the public school in our district sucks. I had already seen how well she did last year and one of our concerns this year was that she wasn't going to be challenged enough. Well, being at home, I have seen just how bright she really is. She loves doing schoolwork at home and doesn't usually complain as long as it is somewhat fun for her. She has a pen pal that she writes to, and she writes letters to her Uncle Mike and Poppy(even though he is 20 minutes away.) She also has started to write stories, which she really enjoys. She pretty much does it all the spelling on her own, and even adds different punctuations in there as well. She has done amazing with her reading and comprehension. Just yesterday at the Doctor's office, she sounded out pharmaceutical. I really love watching her get excited when something that she is learning just clicks. Since she has been homeschooled, she has joined Daisy Scouts, Awanna(bible study), and recently started cheerleading. She loves participating in all these activities and getting to be around her friends.<br />
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For Kate's birthday, Grandma treated her to some time at the salon getting her hair and makeup done. She enjoyed being treated like a princess and even brought her princess crown for her hair. Tomorrow, we are just having a little family party, which includes her friend, Mya that she has been talking non-stop about her coming! <br />
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Kate has definitely made these past 6 years memorable. She is such a sweet, funny, intelligent, kind, chatty girl, who sometimes can be sassy, but that is ok!<br />
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Hopefully after the weekend, I will be able to post pics of the princess.Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com1tag:blogger.com,1999:blog-5934500869133108321.post-68367488771693189412011-02-01T11:37:00.003-05:002011-02-01T17:04:39.514-05:00The Challenges Of Raising A Child With Down SyndromeOften people wonder about the challenges that go along with raising a child with Down Syndrome, so I thought I would share my experiences. <br />
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</div><ul><li>Having to constantly deal with Kylee's happiness can be very challenging. She almost always wakes up happy, even if she just spent half of the night awake playing. It's not easy to wake up to that smiley, happy girl, but alas, it has to be done.</li>
<li>Since having Kylee, I've encountered a great support system online and in real life. When you have a child with Down Syndrome, you acquire a great, new family. Having such great support can be really hard sometimes, but it is what we do to help each other.</li>
<li>Also since having Kylee, I've come to appreciate the little things more. When Kate was younger and reaching milestones, I was excited, but I don't think I ever got so excited about her being able to stack blocks or point to certain objects in a book. When you have a child with Down Syndrome, you tend to get excited over every. little. milestone. It's a lot of work to get all excited, but hopefully it will get easier.</li>
<li>I have come to have more respect for people that don't fit the perfect mold of society. Oh, if only I could go back to not feeling this way.</li>
<li>Kylee can be very sweet and when she wants to she will give you a hug, but she hasn't gotten to the point yet where she gives out hugs all the time. When I volunteered at a Down Syndrome camp this past summer, the kids there just wanted to hug on you all the time. Experiencing that was hard, but I didn't want to make them feel bad so I just sucked it up and received many hugs. I'm hoping that Kylee won't be that way because I can only imagine it is hard to feel that kind of love from your child.</li>
<li>Seeing the therapists get excited about the progress that Kylee continues to make is another challenge. I don't understand how they can get so excited, but whatever, I just humor them and pretend I'm excited too.</li>
<li>Since Kylee was born, she has been so easy going and has had slept through the night since she was born. Luckily, at the beginning we were told to wake her up for feedings, but after a few months, we had the dreaded task of sleeping all night. </li>
</ul><br />
Hopefully, overcoming these challenges will get easier. Having to deal with this happy, sweet girl all the time makes it hard.... Bazinga(for those who have watched Big Bang Theory, you will get that comment)<br />
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</div><div class="separator" style="clear: both; text-align: center;">Anyone else care to share their challenges?</div>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com3tag:blogger.com,1999:blog-5934500869133108321.post-79392783939154135712011-01-28T03:34:00.002-05:002011-01-28T03:38:51.945-05:00Worthy of LifeSo often individuals with DS are seen as not worthy of life and often people talk about how much they "suffer from Down Syndrome." In an article about a new test coming out that can detect DS prenatally, one ignorant poster made such a disgusting comment that it just makes me wonder why one would think one life is less worthy than another just because of an extra chromosome. Here is said ignorant comment....<span class="Apple-style-span" style="color: #38761d; font-family: Verdana, sans-serif; font-size: 12px; line-height: 17px;">If you can prevent suffering, wouldn't you? Perhaps something like Type II diabetes -- a disease that is usually adult-onset and easy to manage with proper attention -- wouldn't be worthy of an abortion, but something as serious and disabling as down syndrome? I know that the individuals who have it often lead relatively good lives, but they die young and often suffer quite a bit during their lives.</span><br />
<span class="Apple-style-span" style="color: #38761d;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: 12px; line-height: 17px;"><br style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: 12px; line-height: 17px;">I would urge the parents of these children who advocate against testing or termination upon a positive test to examine how much of their opinion is based upon their own need to care and love for their child. Yes, your child is likely wonderful and kind -- most people with down syndrome are incredibly nice -- but are all the struggles they go through worth it? Wouldn't it be good to abolish something as clearly problematic as down syndrome, to effectively cure it? </span></span><br />
<div><span class="Apple-style-span" style="color: #111111; font-family: Verdana, sans-serif; font-size: 12px; line-height: 17px;"><br />
</span></div><div><span class="Apple-style-span" style="color: #111111;"><span class="Apple-style-span" style="line-height: 17px;">The only thing that needs to be cured in regards to Down Syndrome is ignorance. I could go on about my feelings on this, but I think this mom of a beautiful girl with that extra something does a pretty good job at summing it up with her video she made of some beautiful soles with Down Syndrome. When you click on her blog, scroll all the way down to the bottom first and pause the playlist and then scroll back up to the beginning and watch the video, but be warned, you may shed some tears as the song is very fitting to those beautiful children.</span></span></div><div><span class="Apple-style-span" style="line-height: 17px;"><a href="http://babynumber10.blogspot.com/2011/01/worthy-of-life.html"><span class="Apple-style-span" style="color: #cc0000;">http://babynumber10.blogspot.com/2011/01/worthy-of-life.html</span></a></span></div>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com1tag:blogger.com,1999:blog-5934500869133108321.post-9305289872875430962011-01-14T21:38:00.000-05:002011-01-14T21:38:14.151-05:00One Year AgoOk, so it was a year ago yesterday... Kylee had open heart surgery to repair multiple defects and did absolutely amazing!<br />
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By looking at Kylee you would never know she had had heart surgery. She is a ball of energy. Sometimes, it seems as if she has had a whole pot of coffee with as much energy as she has. <br />
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She is such a sweet, silly, beautiful, yet stubborn little girl! We are so blessed to have her(and Kate) in our lives. <br />
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Yesterday, we had heart cupcakes and sang to her, which she thought was funny. She sure did love her cupcake though as you can tell in these pictures.<br />
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<div class="separator" style="clear: both; text-align: center;"></div>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com2tag:blogger.com,1999:blog-5934500869133108321.post-24830025373123644502011-01-11T20:59:00.009-05:002011-01-11T21:29:24.051-05:00Case Of The Mondays<div class="separator" style="clear: both; text-align: center;">This is what Kate said the other morning as she came out dressed up like she was off to work. She said, "Well, i didn't sleep very good last night, but i'm off to work. I have a case of the Mondays!" She is so silly.</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQuDwovaP-cX9y-NjA6scKcZkWEawFKZAsHXnu4WcsYFVT2ZpoOgM4ERru2pQWsSo3G5inn18-AQjWDU8wSLtZx7HmkT7OXbLgc_KSWwptqPBWwdb_yGTYBZcvK_EGCm-oBCwv8WlqlUw/s1600/001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQuDwovaP-cX9y-NjA6scKcZkWEawFKZAsHXnu4WcsYFVT2ZpoOgM4ERru2pQWsSo3G5inn18-AQjWDU8wSLtZx7HmkT7OXbLgc_KSWwptqPBWwdb_yGTYBZcvK_EGCm-oBCwv8WlqlUw/s320/001.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">The girls had a great Christmas, although Kylee just preferred the wrapping paper over the presents. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGyVyscE2u0ToY4Qp3HDqE_L5qEmyuxVKAy6qOsuAet1BMRb62G8CF73O7pMQdhuocEjbzB-f0-oPnQFxlRJNHhF3llUACYKw6Eu4n4hyphenhyphena8CpoCgp22z2vNZnKbnSBrMmCXEsEsgxpqVw/s1600/100.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGyVyscE2u0ToY4Qp3HDqE_L5qEmyuxVKAy6qOsuAet1BMRb62G8CF73O7pMQdhuocEjbzB-f0-oPnQFxlRJNHhF3llUACYKw6Eu4n4hyphenhyphena8CpoCgp22z2vNZnKbnSBrMmCXEsEsgxpqVw/s320/100.JPG" width="308" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOwqmIFmA9_1Yew2pB2S5qiQPDFsUXwmIUyvjCo7C8VgJ0CKSXf-i7EyDXUfDYDYcWYweqAmMiTqdnAoAMMdrFC_u83Eu157_hUEJuowubdfyoU1WDc8dTsynJk6FNIUhXT1Vp0kq-pE8/s1600/103.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOwqmIFmA9_1Yew2pB2S5qiQPDFsUXwmIUyvjCo7C8VgJ0CKSXf-i7EyDXUfDYDYcWYweqAmMiTqdnAoAMMdrFC_u83Eu157_hUEJuowubdfyoU1WDc8dTsynJk6FNIUhXT1Vp0kq-pE8/s320/103.JPG" width="272" /></a></div><div class="separator" style="clear: both; text-align: center;">. </div><div class="separator" style="clear: both; text-align: center;">Kate was very excited this year and counted down the days to Christmas. </div><div class="separator" style="clear: both; text-align: center;">Both girls have been doing well, health wise. Kate had some issues with her allergies bothering her for a few weeks and Kylee had a couple days with a fever due to an ear infection, but other than that they are doing well.</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Kylee had a visit with the neurologist a month ago. Her therapists recommended having her checked out due to the fact that when she crawls, she sticks her left leg out and now that we are working on walking she has issues there as well. The faster she goes or the harder she tries, the worse it is. Because of this and the fact that she had some oxygen issues when she was born, they recommended seeing a neurologist. After meeting with the neurologist, she said that Kylee does have a very mild case of Cerebral Palsy, where it is only affecting her left leg. She did say it won't get worse and if it starts to interfere more with walking, then we will look at getting a leg brace, which will help. So far, though, she is doing great. She loves to stand, and will take steps by herself, but only if she thinks you are supporting her. I can just barely touch her and she will take a few steps, but the second i take my finger away, she plops down. She also loves to have races with her walker against Kate and Daddy.</div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyg-qrGS-reBzS-FXGwyWtrL-4K23Skp8ZI2nqv2v2oCSNa83JHsuNXpY24zQ_-pk1uTfY9TKBCZ_6oYP8_AQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br />
<div class="" style="clear: both; text-align: center;">She really is doing great overall, though. Still working on a few things as she can be very stubborn and refuse to feed herself or say words or signs when she knows perfectly well how to do these things.</div><div class="" style="clear: both; text-align: center;"><br />
Kylee got to meet her online "boyfriend!" <a href="http://wwwourunexpectedjourney.blogspot.com/">Bennett</a> is sooo cute with his big brown eyes. Another mom, Christy, that lives in the area who has a little cutie with Down Syndrome and I met Bennett, his mom Adrienne and his family as they were visiting out of town family. I know his mom from facebook and blogging. Bennett is so cute that Christy and I always joke around as to which of our daughters will get to marry Bennett.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0-9ULwZS8BuWbawhfz4IfsIDqX6iO681FLhHPy8DzlE08T4hmlzj6AyxsKskOCZld2MVvWabKNDhdyhRy7ZJ46by0bOZkQJBv3QduVtWZVeYkrF-5l_7m1lApnCFdbok0T2cxpNRKl8w/s1600/010.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="293" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0-9ULwZS8BuWbawhfz4IfsIDqX6iO681FLhHPy8DzlE08T4hmlzj6AyxsKskOCZld2MVvWabKNDhdyhRy7ZJ46by0bOZkQJBv3QduVtWZVeYkrF-5l_7m1lApnCFdbok0T2cxpNRKl8w/s320/010.JPG" width="320" /></a></div><div class="" style="clear: both; text-align: center;">Bennett</div><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiboi2DBAJeIGyDI-9yXfJVKeLuP-Rj4HwI6SjnQqKXwBJI8gVUj-RJpBbQXXX9XgnxsTIdX_MExb2wufLzPd3dX4HdINe0-XNp4hCm1-uDQaTfrdD-xTsmMb7xBeY1KmPcltWhyrCUBJU/s1600/b%2526k.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiboi2DBAJeIGyDI-9yXfJVKeLuP-Rj4HwI6SjnQqKXwBJI8gVUj-RJpBbQXXX9XgnxsTIdX_MExb2wufLzPd3dX4HdINe0-XNp4hCm1-uDQaTfrdD-xTsmMb7xBeY1KmPcltWhyrCUBJU/s320/b%2526k.jpg" width="320" /></a></div><div class="" style="clear: both; text-align: center;">holding hands</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-vUhEtj5wJS2BH4Cou6uMg5-5zwslkM8PzVCprx8a7Q_qAagrkNFAL91CPTLq54ZZdLLq91O97TIefLvLU2QtY09nAfhSQ_tb6rS8Y0fl_ypNrbLW8RZwM0QJkQg8vxnK5ZQYs8y_Ri4/s1600/b%252Ck%252C+%2526+a.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-vUhEtj5wJS2BH4Cou6uMg5-5zwslkM8PzVCprx8a7Q_qAagrkNFAL91CPTLq54ZZdLLq91O97TIefLvLU2QtY09nAfhSQ_tb6rS8Y0fl_ypNrbLW8RZwM0QJkQg8vxnK5ZQYs8y_Ri4/s320/b%252Ck%252C+%2526+a.jpg" width="320" /></a></div><div class="" style="clear: both; text-align: center;">Arden, Bennett, Kylee, and Bennett's sister</div><br />
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</div><div class="separator" style="clear: both; text-align: center;">Here is Kylee's best buddy Ava. Kylee and Ava are practically twins. We try to get together a couple times a month. Ava is one month younger than Kylee and also sports an extra chromosome and has the same two heart defects as Kylee, which like Kylee she had successfully repaired last year and did amazing.</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5V9apyHAS2_MUsDkMNhze9hxgiDcicFkqw2YUHd5wFcoMhRzZ3AWsLSRbNYdNKPeZ65g4Yzn-EJjNfSzaTEVKAuwjLgDH7nBMPPYupROvXXvGVERbyEFRHE9jGaQfoSx5qksH-kT52T8/s1600/Ava+%2526+Kylee.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5V9apyHAS2_MUsDkMNhze9hxgiDcicFkqw2YUHd5wFcoMhRzZ3AWsLSRbNYdNKPeZ65g4Yzn-EJjNfSzaTEVKAuwjLgDH7nBMPPYupROvXXvGVERbyEFRHE9jGaQfoSx5qksH-kT52T8/s320/Ava+%2526+Kylee.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com0tag:blogger.com,1999:blog-5934500869133108321.post-74806912367999177192010-12-09T21:33:00.002-05:002010-12-09T22:03:45.400-05:00An I-Pod Giveaway<div class="separator" style="clear: both; text-align: center;">A fellow mom with a little girl with DS is giving away a free i-pod touch with a built-in camera. All you have to do is check out her blog <a href="http://babynumber10.blogspot.com/2010/12/most-important-post-i-have-ever-written.html"><span class="Apple-style-span" style="color: #cc0000;">HERE</span></a> and get the full details. Basically, you donate to this little sweet orphan's fund.</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2SWJmeV5hgnI6mIE8U9lorQWZi7sss7xO7ANY2nO4builMBj3JtzOHOaRADQH_AjGtwlW2wAikgD8hFAOBY5F2BrASZffSrkCKJYAOSNKVPGgY2VQWTVpFgIDjglFvGw4osU6s3sYHuQ/s1600/olga.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2SWJmeV5hgnI6mIE8U9lorQWZi7sss7xO7ANY2nO4builMBj3JtzOHOaRADQH_AjGtwlW2wAikgD8hFAOBY5F2BrASZffSrkCKJYAOSNKVPGgY2VQWTVpFgIDjglFvGw4osU6s3sYHuQ/s320/olga.jpg" width="277" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;">So, you donate to this little girl's adoption fund either via the link on Patti's blog or you can click <a href="http://reecesrainbow.org/olga-r-3"><span class="Apple-style-span" style="color: #cc0000;">HERE</span></a> to donate. After you donate, you leave Patti a comment that you did so and you get a chance to win the free ipod touch. If you blog about the giveaway, you get another chance, if you tweet about it, another chance, facebook about it, another chance, or if you become a follower of Patti's blog another chance! If you haven't looked at her blog, you should, it is inspiring! She has 10 kids and they are beautiful!</div><div class="separator" style="clear: both; text-align: center;">Olga is almost 5, has Down Syndrome just like Kylee and is facing a mental institution if not enough money is raised for her adoption fund. There are plenty of parents who would love to adopt, but the cost of international adoption is not cheap. Unfortunately, when the children turn 5, they are placed in an institution. </div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="color: #333333; font-family: Verdana, sans-serif; font-size: 13px; line-height: 20px;"><a href="http://reecesrainbow.org/olga-r-3" style="color: #5588aa; text-decoration: none;"><span style="color: #3333ff;"><strong><br />
</strong></span></a>If Olga has a huge amount in her fund- <strong>bank on it</strong>- a family will come forward to adopt her. There's not a lack of families who want these babies- there's a lack of finances.<br />
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Please spread the word, and please pray for Olga.</span></div>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com0tag:blogger.com,1999:blog-5934500869133108321.post-2476047548721635622010-11-29T23:51:00.001-05:002010-11-29T23:52:50.700-05:00A Day At The Park Taking good pics of both girls is actually no day at the park, but we did manage to get a few!<br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFIoxTRWNIsoFYA0_cVDRRK4iVhwT2Tx1Q32t80IziVdx347pzOt2K9G7mmSS69g-xw8xZTNvuo60bVkxKovfDI4C3zrA-KDlmM03fX5XcZgTGDutE0hN4BacSbuFJWrDpswypZDQLcM/s1600/008.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFIoxTRWNIsoFYA0_cVDRRK4iVhwT2Tx1Q32t80IziVdx347pzOt2K9G7mmSS69g-xw8xZTNvuo60bVkxKovfDI4C3zrA-KDlmM03fX5XcZgTGDutE0hN4BacSbuFJWrDpswypZDQLcM/s320/008.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;">when one is smiling, the other is not!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3GtYuTp3TYFi3fyCI6yNhXHhG9bf7tBCjpUN2oVp8vy7RoeUb4rIO1VBAwi8POYxfiyqNTID-qDOehFa18ID9DoqNStJY_hdeHt7mmOHSdc7aSn_TTf7PuCWNFy6-oPbuM9IFlyW3Ljw/s1600/011.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3GtYuTp3TYFi3fyCI6yNhXHhG9bf7tBCjpUN2oVp8vy7RoeUb4rIO1VBAwi8POYxfiyqNTID-qDOehFa18ID9DoqNStJY_hdeHt7mmOHSdc7aSn_TTf7PuCWNFy6-oPbuM9IFlyW3Ljw/s320/011.JPG" width="320" /></a></div><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjHq2oeOE5wW0q55J5eE7TRaT5hrM04K-jHZOS-DjLcSaYAfbzgakD10zBHlj0VulSFQQHbHPoXCsJjBkmibAHcFU5Rpzh8MmlQnQpU_jcIprd6-DY4Pk6Wtbgl58N2bqb6UVqCrD0vCw/s1600/017.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjHq2oeOE5wW0q55J5eE7TRaT5hrM04K-jHZOS-DjLcSaYAfbzgakD10zBHlj0VulSFQQHbHPoXCsJjBkmibAHcFU5Rpzh8MmlQnQpU_jcIprd6-DY4Pk6Wtbgl58N2bqb6UVqCrD0vCw/s320/017.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">oh how Kate loves to pose for the camera!</td></tr>
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_W7pbxcuJIz8qYiOlG0wCZFvjN_H5Ltnh7XTJ5UaiJMuKK_P8yOCbJ6T2vyAKeuWYdOZJPk9OckGhirdVgz9-a1y2TKHFQ-JTI2JAiHNCyAeMfqWSg3wLTjdeZ8ymevmLaJ_qN3Jnp9A/s1600/069.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_W7pbxcuJIz8qYiOlG0wCZFvjN_H5Ltnh7XTJ5UaiJMuKK_P8yOCbJ6T2vyAKeuWYdOZJPk9OckGhirdVgz9-a1y2TKHFQ-JTI2JAiHNCyAeMfqWSg3wLTjdeZ8ymevmLaJ_qN3Jnp9A/s320/069.JPG" width="320" /></a></div>sorry, Uncle Mike, i tried to get some decent pics of Kylee, don't know if any of them will work or not. will be taking some more pics at the old folk's home(aka mom & dad's house).Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com1tag:blogger.com,1999:blog-5934500869133108321.post-64322370514762875212010-11-28T23:26:00.002-05:002010-11-28T23:43:38.137-05:00Tis The Season For Giving, Help Out A Child In NeedThis precious cutie with Down Syndrome is Melanie! Isn't she adorable? I have seen her face many times over the last couple of months and today after dressing Kylee up to go outside in her oversized jacket and hat just like Melanie's hat, she reminded me of Melanie. She has many things in common with Kylee. Well, they are both adorable, they both have Down Syndrome, they both have heart defects(although Kylee's has been repaired) and they both have loving families. The one thing they don't have in common though is that Kylee is able to be with her family, whereas Melanie, although she has a loving family that is in the adoption process, they have to overcome the obstacle of raising enough money to bring her home!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-v1yjxJ_EQqtUqQIg8VlyrQGzCaN4pEntu_uVSXf08GelzU2RW-1BL5sn7UA7VMkq1NO2o4tGJGyNumo5MqA1bKV-A9PCLOr-ZiBX750C-6vyVE183nFp1nC-yTR-6lMdG_VrPJZfOJM/s1600/melanie.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-v1yjxJ_EQqtUqQIg8VlyrQGzCaN4pEntu_uVSXf08GelzU2RW-1BL5sn7UA7VMkq1NO2o4tGJGyNumo5MqA1bKV-A9PCLOr-ZiBX750C-6vyVE183nFp1nC-yTR-6lMdG_VrPJZfOJM/s320/melanie.bmp" width="240" /></a></div><br />
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There are many precious little ones like Melanie that are born in Eastern Europe with Down Syndrome that are thrown away in orphanages. If they are not adopted by 4 to 5 years of age, they are placed in an institution. This holiday season won't you please considering donating to this little cutie pie, Melanie to help bring her home to her forever family. <br />
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From what i have read the adoption fees are quite expensive, but bringing this little girl home to her family is priceless and definitely worth the cost!!! Please check out the link below, all donations are 100% tax deductible.<br />
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Like i mentioned, Melanie also has heart defects as well as intestional issues, both needing surgery, which is all the more reason for her to hurry home to her family. This season when you are out buying gifts for your loved ones, think of Melanie who is need of the greatest gift of all this holiday season- to be with her loving family. So often we take for granted the things we have, for once we need to think of others. <br />
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You can also check out her button on the side of my blog for updates on Melanie.<br />
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<a href="http://reecesrainbow.org/sponsorsader"><span style="background-color: white; color: red;">http://reecesrainbow.org/sponsorsader</span></a>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com1tag:blogger.com,1999:blog-5934500869133108321.post-18984792313010319862010-10-31T17:15:00.002-04:002010-10-31T18:32:52.998-04:00Down SyndromeSince October is/was Down Syndrome Awareness month, i thought i would write a little post about Down Syndrome.<br />
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There is a high termination rate of pregnancies when there is a DS diagnosis. Why it is so high, i am unsure, but i have some ideas. I believe that alot of people, the medical field included are uneducated when it comes to Down Syndrome. I can totally understand this because when Kylee was born and i received her diagnosis, i was devastated. I thought it was the worst thing in the world and i think alot of that was the fact that i really didn't know much about DS and the images/thoughts i had were outdated things. <br />
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So many things have changed for the Down Syndrome community. Many years ago, mothers were often encouraged to place their babies in institutions and of course, medical technology wasn't like it was today. There are health issues that accompany a individual with DS, such as heart defects. Obviously years ago, the medical knowledge and technology weren't like they are today, which would shorten the lifespan of an individual with heart defects. Today, the most common heart defect that accompanies individuals with DS, which is Atrioventricular Canal defect has a successful repair rate of close to 100% and most will come through surgery with zero to little complications. If it is like this now, imagine what it will be like in the future. Kylee had open heart surgery for multiple defects and only had a hospital stay of 4 days... she did amazing. Just think, 10 years from now, who knows what surgical repair will be like.<br />
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Early intervention therapy is started shortly after the birth of a baby with DS. Kylee started recieving therapies within 3 months of her birth. I don't believe that the therapies that babies/children receive now existed years ago. With the help of these therapies, children are able to acheive much more developmentally now than years ago. Yes, scheduling therapies can be challenging, but it is all in the convenience of your own home or if your child is in a childcare setting, it can take place there. <br />
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When a child starts school they are able to be mainstreamed into regular classrooms. From what i have seen and been told, individuals are far more successful when included with their typical peers. Years ago, there was no opportunity for this. Most individuals, not all have either mild to moderate cognitive disabilities. I read that only about 5% have severe or profound disability.<br />
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I have often read different things about what people are afraid of with the possibility of having a baby with DS. First, people believe that it will ruin their marriage/relationships. Studies have shown that marriages are actually better when raising a individual with DS. In fact it shows that divorce rates are much lower in couples with a child that has DS than other married couples. People often feel that this will have a damaging effect on siblings. Most often, this is not the case. It has been reported that siblings often have a greater sense of compassion.<br />
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Then there is the financial issue. While yes, medical appointments can contribute to more financial expenses, but there is assistance available. Early intervention therapies are provided at very little to no cost. When the indiviual reaches 18(i think) they are able to receive financial assistance. Before age 18, they are able to receive assistance as well, but in this case the parent's income is counted, therefore some families do not qualify.<br />
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People often worry about the future and what will happen when the parents get older. More and more adults are able to live semi independently in group homes, have jobs, even get married, and live much more independent than they were able to years ago. <br />
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I have often heard this statement, " i have seen what it is like for a family to raise someone with DS." Then they will go on to say how poor of a life the adult has. Well, if you think about it let's say they are talking about a 20 something year old. What kind of services, medical technology and overall community support was available 20 years ago? Another thing to take into consideration is this- what type of family environment did that individual grow up in? Was it one that was filled with love and support or one where the family didn't provide such needs. My point is things are changing for the DS community to help individuals live a longer, more independent life. <br />
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I have often heard/read that they(moms) wouldn't want their child to live a life of suffering. For some reason, people think that individuals suffer from Down Syndrome. Honestly, i think the most that they suffer from is the ignorance of others. If individuals with DS are often stereotyped as very sweet loving individuals, then where is the suffering? I think one thing people fail to realize that individuals with DS are just that. They are all individuals, who are unique. Yes, they can very sweet, but they can also be stubborn. They have a mix of emotions just like everyone else. Phil and I volunteered at a camp this summer for individuals with DS ages 10-17. The only suffering i saw there was when the teenage girls were upset because a certain boy was dancing or talking with another girl...sounds pretty typical to me. Sure, there are some differences. It does take them a little bit longer to do things, but given the opportunity, most can do it. Something i heard that really sticks with me... treat your child as if they have a learning disability, not an inability to learn. People often think that individuals with DS aren't capable of lots of things. If given opportunity, time, patience, and compassion, there is so much they can acheive. <br />
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Many people say i know i couldn't handle raising a child with special needs. We all believe at some point that we aren't capable of certain things. If you had asked me before Kylee was born if i could handle raising a child with special needs, i would have probably said no, but you just accept and deal with it and what do you know most parents love the journey of raising a child with DS(i know i do). Sure raising a child with DS can be challenging, but raising any child has its challenges. I often feel more frustrated with Kate than i do with Kylee. When Kylee achieves a task, it is so much more exciting because she has worked hard for it. When she smiles her whole face lights up. She is an absolute joy and i am so thankful to have her(and Kate). Having a child with DS comes with plenty of rewards. I have learned to have more patience(although i don't always use it), i have learned to appreciate life more, and i have acquired a larger family. It is great to have such a great support community(although most is on the internet) to share the joys and challenges of raising a child with DS. <br />
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When we had an appointment with the geneticist a couple of weeks ago, he stated that many doctors when delivering a diagnosis of DS will deliver it in such a bad manner, which usually is something along the lines of good baby vs. bad baby. He stated and i agree that it doesn't mean it's bad, it is just different. Unfortunately, many doctors will push termination and/or give outdated and incorrect information about DS, which is sad because most patients trust their doctors to give them the best information possible.<br />
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In summary, having a baby with Down Syndrome is not something to be feared, in fact it is one of the best things to have happened to me!!Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com3tag:blogger.com,1999:blog-5934500869133108321.post-5187868475427430312010-10-29T15:01:00.000-04:002010-10-29T15:01:42.776-04:00HappeningsIt has been quite a long time since i updated and that is because there really is no exciting news to tell about, but i will fill you in on the little tidbits of what the girls have been up to.<br />
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First, Kylee has been doing well in the health department. She has had a couple colds and she did have bronchitis back in July, but that is all. Developmentally, she has been doing fantastic. She crawls like a professional now, although she has moved on to bigger and better things. She has mastered pulling herself up on furniture, people, etc and has also mastered cruising along the furniture. When she feels like it she can walk well with assistance. Lastly, in this past week she has been going from a sitting position to standing and just thinks it is the greatest thing! She has picked up lots of signs, sounds, and a few words. She is very stubborn though and will only do certain signs if Kate asks her to do it. Little stinker...i can sit there and ask her to sign more for a good few minutes and she just stares at me, but if Kate asks her, her hands are in position before Kate even finishes asking her. She will say da da(daddy), baby, all done, bye bye, yeah and yay which aren't exact but at least she says them. Again, little stinker will only say ma ma when she wants to and she never directs it at me. I am glad that she is independent but it also makes it frustrating at times especially when it comes to feeding herself and getting changed. Her therapists and doctors are really pleased as are we at how well she is doing. I don't think it will be long before she starts walking on her own. She definitely will do it with help ONLY when she wants to otherwise her legs will turn into jello when you try to get her to walk. <br />
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Kate has been enjoying being a kindergartener. In fact every new person she talks to she has to tell them, " I'm already in kindergarten!" She loves school, except for rest time, which she is always saying is boring. Even though she loves school she hates doing homework. So far they haven't done much in school except for review which is somewhat frustrating because i know that she is capable of doing so much more than they are doing currently. Poor thing got tortured a couple weeks back. She has been having issues with allergies for awhile now with her constantly coughing, so we took her for allergy testing to see what the culprit was. She is deathly afraid of needles to the point where she doesn't even like being in the room when Kylee gets shots. Needless to say, being poked 28 times was not a fun experience for her. We did discover though that she is allergic to 7 different allergens, which i think the biggest one affecting her lately is the ragweed. Thankfully she has been better so hopefully she stays this way for awhile. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqCZHImgcIjqkUe_kjh95-mafTOML67k6vkYHlAe_E6ZzJNvE3bUX32oH4cTw54iV0g6X2SmN60J8ePtBJMY1YYgDSTwaMitiXkd3WblIy-0lb30TGBj4FAQlpl5l47Y11G1_aCurCJYw/s1600/028.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqCZHImgcIjqkUe_kjh95-mafTOML67k6vkYHlAe_E6ZzJNvE3bUX32oH4cTw54iV0g6X2SmN60J8ePtBJMY1YYgDSTwaMitiXkd3WblIy-0lb30TGBj4FAQlpl5l47Y11G1_aCurCJYw/s320/028.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7R7FCLaDU2qyPWlA9rtZOz3NwQrsf3PE9Cvugfct5fMd5DdNUcwcUF02JZLw34qw0uKjmyQcSodk_Ucx2bVdXNwZGHpNrCofkO42bpLdaz99R2fhu_JORY8WNrz407WnSbYZAfoWmmg8/s1600/005.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7R7FCLaDU2qyPWlA9rtZOz3NwQrsf3PE9Cvugfct5fMd5DdNUcwcUF02JZLw34qw0uKjmyQcSodk_Ucx2bVdXNwZGHpNrCofkO42bpLdaz99R2fhu_JORY8WNrz407WnSbYZAfoWmmg8/s320/005.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKRR8RNLTbnHQNeiiHU4eF8-toR2JNk_Rb2XWuOLZwNrQzWkX2u4yZfkZhQQ8AgStVkkvjsnyOplUA0Yr84I86phfkxF1Bnba2JLkE-5Onp7DrM1xtW1P61DS31wgianpaQY9f78bDKmU/s1600/038.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKRR8RNLTbnHQNeiiHU4eF8-toR2JNk_Rb2XWuOLZwNrQzWkX2u4yZfkZhQQ8AgStVkkvjsnyOplUA0Yr84I86phfkxF1Bnba2JLkE-5Onp7DrM1xtW1P61DS31wgianpaQY9f78bDKmU/s320/038.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;">Kylee being her usual silly self!</div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzHvzKtcpMOvzMGT2ePiSw6GI_6UoXjTv7VXJJ4ixqssSwv1NGGONpCESP01SW1zqDCfP5vSFZuxbeaKyWCnw' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;">Excuse the lack of clothes, but Kylee loves trying to stand after her bath!</div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwdtkhApVj8iT5nyBhZdkxQXKC3jvYZx6JWPiH5CxZU5SRorj2QJDT7djZyITujsDXUHDnivr6Sb_T5CXqT' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>Anyways, sorry this update is boring but really other than the little things, there isn't much excitement around here.Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com0tag:blogger.com,1999:blog-5934500869133108321.post-85321260611506222382010-07-13T12:45:00.000-04:002010-07-13T12:45:24.943-04:00Awesome Cardiology Update!So, Kylee had her 6 month post-op checkup yesterday. She had a sedated echo to check how well her heart is doing after her repair 6 months ago. It was so great to her the cardiologist tell us that he was very impressed with her repair and that Kylee doesn't need to follow-up with him until 1 year. It is truly amazing to me see Kylee go from being born with multiple defects to having congestive heart failure to having a full repair done at 7 months to now. She is doing so well. You would never know that she had endured all that in her first year of life. We are so glad that we were referred to such an amazing surgeon. Everybody who has seen the images of Kylee's repaired heart has said what a great job the surgeon had did to Kylee's heart. Although, I don't forsee any future surgeries for Kylee, I am sad that the surgeon moved to Denver for a better position. Oh well. Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com2tag:blogger.com,1999:blog-5934500869133108321.post-77098105161812256822010-07-04T19:46:00.000-04:002010-07-04T19:46:47.792-04:00A Couple Of Videos<div class="separator" style="clear: both; text-align: center;">A cute video of Kylee being tickled.</div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwnhmmKqS4ZH-ayR4qIgKAYuv0V9jPHxMTIySmgASg0fTuXcjkyWkInA5ttPE8MI1GyYXC83KRCH2I1McWusw' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Kylee has a fascination with the vacuum cleaner. She takes off when she sees it.</div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dx7c9u8gbFMi9mvBhJCug_rWSRmNBFjV8b9GryFybj6Sc1cW14cZFq-q_R_kHaOXYqTyvr7L3WGAwFEMVaFgA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com0tag:blogger.com,1999:blog-5934500869133108321.post-14819667483101748942010-06-18T01:03:00.010-04:002010-06-18T01:48:08.844-04:00Happy Birthday Kylee!<div class="separator" style="clear: both; text-align: center;"></div>I can't believe my baby is 1 year old! If only i could have seen a glimpse into the future when she was born, i would have seen how silly i was to be afraid to have a child with down syndrome. When Kylee was born and i found out that she had down syndrome, i was completely devastated. I really honestly thought that her diagnosis was the worst thing to happen to me. I didn't know much about down syndrome, basically all i knew of was outdated information. In this past year, i have realized that my feelings were shared among many mothers who also received the down syndrome diagnosis for their child. Also, in this past year i have witnessed what an absolute blessing Kylee is! Yes having a child with down syndrome comes with extra work which involve therapy appointments and for some extra doctor's visits, but what you get in return is so so worth it! With any child there are going to be challenges. Sometimes, i think the challenges with Kate and her 5yr old attitude are greater than with Kylee. Don't get me wrong, Kate is a great child and is sweet, caring, loving, funny, but she can also have a attitude as well. The accomplishments that Kylee achieves are so much greater because of the all the hard work that is put into it. I am amazed at how far Kylee has come! Going in for open heart surgery at 7 months old was definitely the scariest thing i have been through, but she sure showed us how strong she was by only being in the hospital for 4 days. I could go on and on about how great having Kylee is, but i will keep it short. She is an absolute joy! She wakes up happy and has the biggest smile on her face, her grin is from ear to ear! She has already become an attention seeker and loves to get a laugh out of others! She loves to dance, play and hardly ever cries! I truly feel like i am the luckiest mom when it comes to my girls! Happy birthday to my sweet, precious Kylee! We love you soo very much! <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkC5mgaMI8vVXVHL7_15iGcWV0VojA-0PSAv-XZmFHsa1o8oKpDezU-y90YF3hmnoYvajUBe6gW4dRrtjcVxuLI-z-6MLKthL1S_MG2zcsht4CLSFMylIsh2dsR3ZHilVSyi1zxBYQ7SA/s1600/176.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkC5mgaMI8vVXVHL7_15iGcWV0VojA-0PSAv-XZmFHsa1o8oKpDezU-y90YF3hmnoYvajUBe6gW4dRrtjcVxuLI-z-6MLKthL1S_MG2zcsht4CLSFMylIsh2dsR3ZHilVSyi1zxBYQ7SA/s320/176.JPG" /></a></div> <br />
<div class="separator" style="clear: both; text-align: center;">from being in mommy's belly</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1ggnllR1ocKz0WKnv1IZ8YF0tAzKVeZQORQkcrbFsaZObq3cKVkmpNBEbaj8n55CUaFEexpqyUdLyoSPl1To0je2RTRpyHyzVBPsXCnTtDzHLK3GI7WBS9wIarL6tenB3Gl1zyMCwV6s/s1600/195.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1ggnllR1ocKz0WKnv1IZ8YF0tAzKVeZQORQkcrbFsaZObq3cKVkmpNBEbaj8n55CUaFEexpqyUdLyoSPl1To0je2RTRpyHyzVBPsXCnTtDzHLK3GI7WBS9wIarL6tenB3Gl1zyMCwV6s/s320/195.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">to the NICU after being born</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo5e_HSIcF1pooWOWbLcTWpkM4lr4XKOlhH7c79WiFzVWElRnvyGHkZaBi4-3Lk4Xg5KGjmB25nYSajSioYu1KqEv_4jKvY7qULsF53Pbt-i7bhGQCdAb6M0Sf41e3mDxUz0CaGRB12yM/s1600/004.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo5e_HSIcF1pooWOWbLcTWpkM4lr4XKOlhH7c79WiFzVWElRnvyGHkZaBi4-3Lk4Xg5KGjmB25nYSajSioYu1KqEv_4jKvY7qULsF53Pbt-i7bhGQCdAb6M0Sf41e3mDxUz0CaGRB12yM/s320/004.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">just plain cute</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzOu_eQiSjUKbq2lRHFsSFxH_tz7BJ6dhy0j1g3dPU0Nnc3u5zr6La4h9cfakwZwtI_3VZynYLzQljH-5lGzVhLyn4FiqLYiaV3AC8GhldYqmgeb6rj9E415wCXIwSNW6DA44MnM0X0tc/s1600/003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzOu_eQiSjUKbq2lRHFsSFxH_tz7BJ6dhy0j1g3dPU0Nnc3u5zr6La4h9cfakwZwtI_3VZynYLzQljH-5lGzVhLyn4FiqLYiaV3AC8GhldYqmgeb6rj9E415wCXIwSNW6DA44MnM0X0tc/s320/003.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">after OHS</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip0RQg1KhlD2yYKKIX7KVrDpMtgB4NQ-dwfSr25Lunho-XZZzLTE5AXTnupFrHHrbYIEbzb8Qu8U7LEsoDB_zniZLQb-UbJ-QlgYCQdceobHGupvdS1HJSVT_oIbGs-6zwE031WlgJAqA/s1600/265.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip0RQg1KhlD2yYKKIX7KVrDpMtgB4NQ-dwfSr25Lunho-XZZzLTE5AXTnupFrHHrbYIEbzb8Qu8U7LEsoDB_zniZLQb-UbJ-QlgYCQdceobHGupvdS1HJSVT_oIbGs-6zwE031WlgJAqA/s320/265.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">learning to sit</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK5Tp9KQbMEuASra9qvykxlCgDZmQoT9ns9OvTStiqjhyphenhyphencDR4JZi8RVPmW4cvK3iXmN02T9FvjElsZS-BM6N8KTCqsbekMDimzbDfUgUazVfnN_dXvtGq526Cn2K8hgI4IKH5CqkxMsFw/s1600/016.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK5Tp9KQbMEuASra9qvykxlCgDZmQoT9ns9OvTStiqjhyphenhyphencDR4JZi8RVPmW4cvK3iXmN02T9FvjElsZS-BM6N8KTCqsbekMDimzbDfUgUazVfnN_dXvtGq526Cn2K8hgI4IKH5CqkxMsFw/s320/016.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">trying to crawl</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0XSgNZlp5rbt5v3pKMeSB__ztROV_zd_QXJz9QysrjjcPWtxvsy5cUxZCDfVUy4xUrEaWnMGGPYAna1rAP-HpuwNL6IPP71M6sraSaL88r9ocb9p6QAcHLIlJVwU7k3X_uBmuisZMLRg/s1600/IM_A0003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0XSgNZlp5rbt5v3pKMeSB__ztROV_zd_QXJz9QysrjjcPWtxvsy5cUxZCDfVUy4xUrEaWnMGGPYAna1rAP-HpuwNL6IPP71M6sraSaL88r9ocb9p6QAcHLIlJVwU7k3X_uBmuisZMLRg/s320/IM_A0003.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">being cute again</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMjLXVlWfr6LgvE20dEzKgI7JERVsyucIW1-XG7bcSVaxD2QkIS0lKsvtPwXbR1piTbX19hheiNvAN2dJlW4zd-j0WNm20I-0b4IQ8BoQYFbyC9TYo8jfcD_p5OATwJTYtCRIJ-xZL2pI/s1600/Edmunds014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMjLXVlWfr6LgvE20dEzKgI7JERVsyucIW1-XG7bcSVaxD2QkIS0lKsvtPwXbR1piTbX19hheiNvAN2dJlW4zd-j0WNm20I-0b4IQ8BoQYFbyC9TYo8jfcD_p5OATwJTYtCRIJ-xZL2pI/s320/Edmunds014.jpg" /></a></div> to just being an absolute angel!<br />
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Ok, so the second to last pic is of Kate at Kylee's age, but i just can't get over the similarities!<br />
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Kylee just loves to dance as soon as we play this song. She could be crying but the second she hears it, she starts bouncing!<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxyTNOwh3m54l4URpVq4dtuPAmndUG6T0xVvnMY4D4J732qzzIb_5f_noKLQVksCokGy_FT5b7Zm8CbrAUF9g' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com3tag:blogger.com,1999:blog-5934500869133108321.post-87852366926167432232010-06-12T09:57:00.007-04:002010-06-12T10:14:46.653-04:00My Girls Are Getting So Big!I can't believe it! Both Kate and Kylee are growing up way too fast. <br />
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Kylee will be turning 1 in just a couple weeks. It just doesn't seem possible. I know i have said it before but she is such a happy baby! I think she has already tried to use it to her advantage. For example, when it is time for bed and she doesn't want to go to sleep, she will bounce up and down on my lap when i am trying to rock her and then she will laugh and stare at me hoping to get a reaction out of me. She is still doing really well in regards to her health. She will follow up with the cardiologist on July 12th for a sedated echo to get a good look at her heart function. She just got her cranial band to help fix the flatness to her head. So far she has fussed or really payed too much attention to it. They estimate she will have to wear it for 3-4 months, but i think once we notice a difference where it isn't noticable, then we won't have her wear it anymore. Developmentally she has been doing great! She started to do an army crawl and she also has been bearing alot of weight on her legs(which 20lbs of Kylee is alot of weight!). Edited to add, since i started this post(almost a week ago), Kylee has figured out how to crawl the right way and she gets going pretty fast when she sees something she wants. She just got braces to support her ankles for standing and when she moves onto walking because her ankles have a tendency to turn out. <br />
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I am still amazed at how well Kate has progressed in preschool. She had her graduation this past Wednesday. For a child who likes to talk non-stop and is loud, she sure was really shy and quiet when it came to reciting her lines for the school play. She seemed to be bored as well, as i noticed her pick her nose on a few occasions and let out a few big yawns. Oh well at least she wasn't the only one. She received an award from her teacher called the "radical reader award" because of how well she can read. We are amazed to see how well she can read and the words she reads, for example she asked daddy what psychology means? She was able to read all the kindergarden words without a problem. She also had her dance recital last weekend and she was so excited to get dressed up and put makeup on. Lastly, she lost her 2 front bottom teeth and the new teeth are already coming in. She was soo excited when the tooth fairy came as well as seeing her new teeth!<br />
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I guess i got a little picture happy!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf6j7YCc52tCRFibgsMqk0NiiJ8PsnLRWBF5-SqpbnJbG1M528WeYImA1QXUmVL3oH9JXlJ5E4Zz7NBSIO6OabyAllM7nUJQQVE9ODSD1uucUSnY0qZ9Ua2FHczN8qWsU_UynlUwc-uHA/s1600/020.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf6j7YCc52tCRFibgsMqk0NiiJ8PsnLRWBF5-SqpbnJbG1M528WeYImA1QXUmVL3oH9JXlJ5E4Zz7NBSIO6OabyAllM7nUJQQVE9ODSD1uucUSnY0qZ9Ua2FHczN8qWsU_UynlUwc-uHA/s320/020.JPG" /></a></div> showing off where her teeth fell out<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsD5Ve1VxxPjoWt1Hjw0Xq56xBQb6ohsdJeiWSEL5tlwCPCW86kA8HzXWm-xfe4eydmp0O9WwMffircZWLXZVJHH11CUTgj7AkfokIb8bJfd2EsBra7dF_wCh1cZfTiAHxlbT6kepBAj4/s1600/021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsD5Ve1VxxPjoWt1Hjw0Xq56xBQb6ohsdJeiWSEL5tlwCPCW86kA8HzXWm-xfe4eydmp0O9WwMffircZWLXZVJHH11CUTgj7AkfokIb8bJfd2EsBra7dF_wCh1cZfTiAHxlbT6kepBAj4/s320/021.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">posing as usual before her dance recital</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQVZNohyVxHZHFIZ7Jc-Md-qvt0_XaHC6vlD_Sy2nAg1HLc_oj83AgUCPa2gNf_DKZgFMC7pifCISD6AtNFx3HdlRLsMnP3H9TpiPOF49mSDFGqTNcGmGhyphenhyphennCS6k_6kAme6h1VsFzBynY/s1600/012.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQVZNohyVxHZHFIZ7Jc-Md-qvt0_XaHC6vlD_Sy2nAg1HLc_oj83AgUCPa2gNf_DKZgFMC7pifCISD6AtNFx3HdlRLsMnP3H9TpiPOF49mSDFGqTNcGmGhyphenhyphennCS6k_6kAme6h1VsFzBynY/s320/012.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH72R6g80U4Fr0kOFBAewgxchs6n-ykf0TMjCTOFnT-U4o0yag4LxhJR7BuE9N_CSimhPR-A7OC1Q8QpJXmNwMEcdnQ9ikZHMBNzRm6nA1srsU1rB4bGg-ymPROoPBW7UQ5jMV0OOg2dk/s1600/008.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH72R6g80U4Fr0kOFBAewgxchs6n-ykf0TMjCTOFnT-U4o0yag4LxhJR7BuE9N_CSimhPR-A7OC1Q8QpJXmNwMEcdnQ9ikZHMBNzRm6nA1srsU1rB4bGg-ymPROoPBW7UQ5jMV0OOg2dk/s320/008.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEYVqFQfC9Ss1BiRdKNo2VYl1L2vjxYqPRI2xDI2ChXOjiXPWD837hDPbXTa1LF6agYsr0MC-9xX3D8eVV_oEqLtiRVcQoehr7KRK9IDsA9ZC2z7Aa9DaO7mBLvL1OvQY_VZHX7jJHtbI/s1600/013.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEYVqFQfC9Ss1BiRdKNo2VYl1L2vjxYqPRI2xDI2ChXOjiXPWD837hDPbXTa1LF6agYsr0MC-9xX3D8eVV_oEqLtiRVcQoehr7KRK9IDsA9ZC2z7Aa9DaO7mBLvL1OvQY_VZHX7jJHtbI/s320/013.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">on stage with some of the other dancers</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS1FgCWkuCaP-0nqXkBODSP0kH4KpV0ExwqPB2Md3iPL1gkxQJnF93iocybTvPvNfzapRBuRDZQ5PxW5BE7gFFlryoCGFNFD8BBLLB0HS_nox3KZU1UGtX-cAnbnFBAQ1v34jOCe-36C8/s1600/014.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS1FgCWkuCaP-0nqXkBODSP0kH4KpV0ExwqPB2Md3iPL1gkxQJnF93iocybTvPvNfzapRBuRDZQ5PxW5BE7gFFlryoCGFNFD8BBLLB0HS_nox3KZU1UGtX-cAnbnFBAQ1v34jOCe-36C8/s320/014.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">at her graduation play, Kate is in the yellow shirt</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGBUyPjGwHg2bQh8MthI4movT5JTXoSfwb54XG247RVtulB6hbYELhrKN61tSHAEPzbVVp2yKknUVMar3rlv_RluZ56ejzoIgpxHziGyixgIJrM9VJzMRTSlZgkg5du8JAZ1S7Os1uaeY/s1600/003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGBUyPjGwHg2bQh8MthI4movT5JTXoSfwb54XG247RVtulB6hbYELhrKN61tSHAEPzbVVp2yKknUVMar3rlv_RluZ56ejzoIgpxHziGyixgIJrM9VJzMRTSlZgkg5du8JAZ1S7Os1uaeY/s320/003.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">after getting her diploma</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Y3uwFqpZn8DnFcMq-seAzQ7yuJVZFcdSjxv2QkOVFlZYZh5mMfF45Aew_NvHuG0yUreHyouy0G0JtLH90eE6CDi1htjcMSm5Hp7pSGsDFTLdHNWYB_vGjmV2WhnczpZDAAHtdYPw4eM/s1600/005.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Y3uwFqpZn8DnFcMq-seAzQ7yuJVZFcdSjxv2QkOVFlZYZh5mMfF45Aew_NvHuG0yUreHyouy0G0JtLH90eE6CDi1htjcMSm5Hp7pSGsDFTLdHNWYB_vGjmV2WhnczpZDAAHtdYPw4eM/s320/005.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">with her wonderful teacher, Mrs. Courtney</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8MUBnK6UiNrWnr63blDOAylHHtE1LqsGuiSAu1X-kyHjPeCQESwgLQ-ibH2zaVyDr6xRTreuETERWIJ0ja4vmorZJ6I2XeXA_PG5jnp-CS3fgLuYbtYOdqtUqNNmNo0meWsViMo3EhMw/s1600/007.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8MUBnK6UiNrWnr63blDOAylHHtE1LqsGuiSAu1X-kyHjPeCQESwgLQ-ibH2zaVyDr6xRTreuETERWIJ0ja4vmorZJ6I2XeXA_PG5jnp-CS3fgLuYbtYOdqtUqNNmNo0meWsViMo3EhMw/s320/007.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">this is the new face Kylee likes to make, so funny!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsEmtx_1V2p538V3d1faFUhd5p4O7a-UVM_CqmJMkLNkjRWnUROiK3qCYuSRx2th1RxxGP97UP7JsUFSQRDqsrRS7an34dQog_dJTh9_dh8Ok71hQwVod4nXZ4ALMoc3HhinNQubu2Pzs/s1600/014.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsEmtx_1V2p538V3d1faFUhd5p4O7a-UVM_CqmJMkLNkjRWnUROiK3qCYuSRx2th1RxxGP97UP7JsUFSQRDqsrRS7an34dQog_dJTh9_dh8Ok71hQwVod4nXZ4ALMoc3HhinNQubu2Pzs/s320/014.JPG" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQHfULXobvG8-JqvIx6l3JmIXsSPD6_buMkC7snj_0gg5vxEtBR7FK-oqaMQz20jDR7oMZRJVHukNwSY2r2aD0OoWyWjjIegkxkUkf2L8daL-e_GaiUfM7gWsFLuij_Ruu0QPBA0rcbJ4/s1600/015.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQHfULXobvG8-JqvIx6l3JmIXsSPD6_buMkC7snj_0gg5vxEtBR7FK-oqaMQz20jDR7oMZRJVHukNwSY2r2aD0OoWyWjjIegkxkUkf2L8daL-e_GaiUfM7gWsFLuij_Ruu0QPBA0rcbJ4/s320/015.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"> it was also after taking her cranial band off, hence the wild hair</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPN1WbEkj1wi3Mp3J_Y5ZT9SPZStSV1jI73nopmqHEMTrvW4NIxvx8Gu2gpRC-4pSU_bXZzWaCQIe_3IcHFMV_AT848uB-v1JqYdkUU9rVxF1WhrOp0dmJ97CVdJH6yUzrKF-3Ft0-2EA/s1600/019.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPN1WbEkj1wi3Mp3J_Y5ZT9SPZStSV1jI73nopmqHEMTrvW4NIxvx8Gu2gpRC-4pSU_bXZzWaCQIe_3IcHFMV_AT848uB-v1JqYdkUU9rVxF1WhrOp0dmJ97CVdJH6yUzrKF-3Ft0-2EA/s320/019.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjsxY93NKp8ernwO8_IVsk2AuMWs7LXBm4u1IZKu0_39yue32isFeqWx84JLcSbq0_yRkIHIphVJJ3zCDVFC_fEufU28BukXt5reI5wjSas9ivfvMS7ffSvQnG40IhJG8KViUX3bCvMsE/s1600/021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjsxY93NKp8ernwO8_IVsk2AuMWs7LXBm4u1IZKu0_39yue32isFeqWx84JLcSbq0_yRkIHIphVJJ3zCDVFC_fEufU28BukXt5reI5wjSas9ivfvMS7ffSvQnG40IhJG8KViUX3bCvMsE/s320/021.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">here are a few pics from our photo session for Littlest Heroes Project</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilxV6-Nv0Q7PkOJaDa710kF5ORJa87Xbv9yFMh9bLJ_q9r44v7NFjB1ABTUWJR7YLJgjNFNWHazLJVmzHUw8oo7aiDmez7R3RJqd-SNn95F4y9AAZ2QFu3NgOxa5eohBAJSIycG4KTS98/s1600/Edmunds002.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilxV6-Nv0Q7PkOJaDa710kF5ORJa87Xbv9yFMh9bLJ_q9r44v7NFjB1ABTUWJR7YLJgjNFNWHazLJVmzHUw8oo7aiDmez7R3RJqd-SNn95F4y9AAZ2QFu3NgOxa5eohBAJSIycG4KTS98/s320/Edmunds002.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">done by a great photographer, Melody!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7EIb7ipW8MwdXe-KtOzM9COGq6sK_Us79yLRMB7cGu4-S65QaLD_IIYom0KreldtMBtLuspXQ5_mX57b-F2fEm00LQFK8OW-LNGmATJI27CofRdFKYjMioG8cUT5zqjZeQ2pkgcgYwiQ/s1600/Edmunds007.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7EIb7ipW8MwdXe-KtOzM9COGq6sK_Us79yLRMB7cGu4-S65QaLD_IIYom0KreldtMBtLuspXQ5_mX57b-F2fEm00LQFK8OW-LNGmATJI27CofRdFKYjMioG8cUT5zqjZeQ2pkgcgYwiQ/s320/Edmunds007.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIEINwDBqB-xy2WmKEafYGEzNM7miJiHccRIW1GJbR5u3EvQW3YUTpl6JTqL5lVzEGcDBrgR0SmGRTdAse4OG5SMuwCphYxasEbASRZuVDDKY9fR-qkihu17XMhklq4vgv8KAjyBDxPF0/s1600/Edmunds068.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIEINwDBqB-xy2WmKEafYGEzNM7miJiHccRIW1GJbR5u3EvQW3YUTpl6JTqL5lVzEGcDBrgR0SmGRTdAse4OG5SMuwCphYxasEbASRZuVDDKY9fR-qkihu17XMhklq4vgv8KAjyBDxPF0/s320/Edmunds068.jpg" /></a></div>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com0tag:blogger.com,1999:blog-5934500869133108321.post-86506869443166400512010-04-27T11:31:00.006-04:002010-04-27T12:43:33.385-04:00Cardiology, 10months, Teeth, And Photo ShootKylee had her 3 month post op checkup with the cardiologist on 15th. I'm happy to say there really isn't much to say. The cardiologist said from a listening standpoint everything sounds good and all her stats were good. He did mention that the little chunker may be gaining too much weight, but i don't think so. She weighed 18lbs which is 3 more than what she weighed right before surgery, plus she is only in the 20th percentile for typically developing babies. We follow up with him in 3 more months and at that point they will do a sedated echo to get a really good look at how her heart is functioning. Overall a great appointment. <br />
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Kylee turned 10 months on the 18th. It is hard to believe that in 2 months we will be celebrating her 1st birthday. Where does the time go? She amazes me as well as her therapists at how much she is progressing. Every week when the therapists see her she has improved greatly. She has figured out how to go from laying down to sitting up, although not the way we would like her to, but nonetheless she has figured it out. It makes her therapist cringe when she sees her doing it. She will get her legs spread all the way like she did a split and then push herself up. Since she already has problems keeping her hips in line, this is why the therapist doesn't like it. Oh well. Since she has figured this out, nap time has become fun for Kylee. She usually will sit in there for awhile just playing with her animals before falling asleep. She has started to figure out how to scoot around really awkwardly with one leg tucked underneath her. She is also bearing alot of her weight when in the standing position with assistance. We have been working on her fine motor skills and she has picked up these things fairly quick. For example, we have been working on some simple signs, like more(since you can't feed her fast enough) and she can do the sign, as well as clap and wave bye-bye. Just in the last week, I have been trying to get her to say Mama(just the sound) and she picked it up within the week. As usual, she is still soo happy except she has been a little fussy on an off, but she just got her second tooth.<br />
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Speaking of teeth, Kate has her first loose tooth. She was so excited when she realized this, but now, she is not anxious for it to fall out. She could care less when the tooth fairy comes. She had her adenoids out last Tuesday and did great. She will still complain that her neck hurts(which i guess is common), but other than that, it hasn't really bothered her.<br />
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Sunday, the girls had a photo shoot. I found this awesome organization called Littlest Heroes Project. It is made up of photographers all over the us and other countries that donate their services for free to kids 18 and under who have had serious illnesses or disabilities. As usual Kate loved posing for the camera and Kylee was more interested in trying to eat the grass than look at the camera. Here is a link to a few of the pics that our photographer, Melody took. <a href="http://snookysmilesphotography.blogspot.com/2010/04/beautiful-inside-and-out-baby.html">http://snookysmilesphotography.blogspot.com/2010/04/beautiful-inside-and-out-baby.html</a>.<br />
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Here are a few other random pics of the girls.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvc8wcONB0usTLO9LgMQOnqez9AZ3ziw9kRFC7_wjPHvJdMtVHBrvPLVOjsgxwnygLaku25F4uzVfCIgTKsIxHdB6idkiP_adAmMVNj_yCc8ruEYWz4nIR5q8fRPMLhLk_OS6wkoweV28/s1600/009.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvc8wcONB0usTLO9LgMQOnqez9AZ3ziw9kRFC7_wjPHvJdMtVHBrvPLVOjsgxwnygLaku25F4uzVfCIgTKsIxHdB6idkiP_adAmMVNj_yCc8ruEYWz4nIR5q8fRPMLhLk_OS6wkoweV28/s320/009.JPG" tt="true" /></a></div><div class="separator" style="clear: both; text-align: center;">I ordered this cute shirt from another mom with a child who has down syndrome</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSG4vLXVxh93j5b3d2gABHX7syNRDeFa-iWvk65uDp6mhyzou5esi9lBspeqa88YguqLIDCV1bWVU45Ze0UpJc5kHzOFKZABMHroHSxM7y7GZPiCoblvcyQuxrHj49JpnhyphenhyphenJhSZ_zuU2c/s1600/010.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSG4vLXVxh93j5b3d2gABHX7syNRDeFa-iWvk65uDp6mhyzou5esi9lBspeqa88YguqLIDCV1bWVU45Ze0UpJc5kHzOFKZABMHroHSxM7y7GZPiCoblvcyQuxrHj49JpnhyphenhyphenJhSZ_zuU2c/s320/010.JPG" tt="true" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvP1-_RG9RbNy6J2OY6vxs-4KSIJfEyYeISb6Airlmuj9lb8Nwvl4SnPMfxi3SYND5mSkmvI2ViHfPbuq_3IekqhsoBVIpQ2hPP5dfcInFwTTjBQADQUvMAtHqDuPPeXQ2fZEewJgdcrI/s1600/016.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvP1-_RG9RbNy6J2OY6vxs-4KSIJfEyYeISb6Airlmuj9lb8Nwvl4SnPMfxi3SYND5mSkmvI2ViHfPbuq_3IekqhsoBVIpQ2hPP5dfcInFwTTjBQADQUvMAtHqDuPPeXQ2fZEewJgdcrI/s320/016.JPG" tt="true" /></a></div>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com0tag:blogger.com,1999:blog-5934500869133108321.post-80954319057433505322010-04-11T23:46:00.012-04:002010-04-12T12:41:23.388-04:00My Two Silly Girls<div class="separator" style="clear: both; text-align: center;"></div>So after reading what other moms had to say about keeping their blogs public, I decided for now just to keep it public. I have been thinking with the large amount of unborn babies with down syndrome who are aborted, it would be good to show how having a child with down syndrome, although a little extra challenging, is such a blessing! <br />
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So, the past few weeks have been busy as usual with appointments and therapy. Kylee is doing great! She had her hearing test a few weeks ago and she passed in both ears! She initially failed in the left ear, which was thought to be fluid, but there are no signs of fluid, so no tubes for now. In a few weeks, Kylee will be getting a cranial band(helmet) to help correct the shape of her head, plus the main reason we decided is due to the asymmetry in her face. It is very apparent in the mirror. So she will have to wear the band for a few months. Since we started thickening up her formula she has become a piggy when it comes to eating, even with solid food as soon as the spoon leaves her mouth, she starts whining. She loves to eat and of all things, she likes spicy things, hot sauce, mustard, onions! She finally got her first tooth about a week ago and is working on another one. As far as developmentally, she is amazing her therapists. She is on the verge of crawling. She will rock back and forth on all fours, but when she goes to reach for something she does a belly flop. If you help her she can move forward a little without flopping. She has also learned to drink from a straw, which may sound silly, but for kids with low muscle tone, it's a big thing. She will hopefully be starting with occupational therapy in the next 2 weeks, which will help with working with her hands, such as feeding herself and will help with doing some sign language. Thursday is Kylee's 3 month post op appointment with the cardiologist, so we're hoping for some good news. As usual, she is such a happy girl, in fact we went to a little get together for the down syndrome association here in charlotte for new parents and of all the babies, she seemed to be the happiest one. She has even started to play little games where she tries to kiss your cheek, but as she is going in for the kiss she makes this playful "i'm gonna get you" noise. <br />
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As far as Kate, she is as goofy as ever. Every day, she is somebody different. It can even change throughout the day. She has many different characters she likes to pretend to be, from Sonic the hedgehog, to all different types of animals, Hannah Montana and sometimes she wants you to call her Frank even when we are out in public. She's such a funny girl. She has been doing amazing with her reading skills. Every other night she has to read a book and she knows almost every single word, even complex words. We went to the school where she will be starting Kindergarten in the fall. It's a newer school, which is very nice, plus i love the fact that it has a great special needs program for preschoolers. She is soo excited because this Saturday she is going horseback riding with her friend Megan and then she is having her first sleepover with a friend from school. Since Kate has been constantly sick, which the doctor thinks because her adenoids are enlarged, it has been contributing to this. She will have them removed next Tuesday. So we're hoping this does the trick and will hopefully lessen the amount of times she is sick. <br />
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Here are a few pics of the girls, I've really been slacking in the pic department. Kylee loves to interact with Kate. She talks to her, trys to grab her hair, smiles at her constantly and will just stare at her. It's so cute to see them interact with each other. <br />
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</div><div class="separator" style="clear: both; text-align: center;">trying to grab Kate's hair<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgosFm9FVmA0V23QY6-KkY5beVmTNTQxaRTG75uWGsto4e0Vg5X2canvGz_klVTsp5lRxYG5n9EkHWmpWnB_OdQvNMUpL8tRff_ab4oufsO3hqbPBNPHmn6DqkKZgTLTuNf_N4oqtdo-qw/s1600/006.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgosFm9FVmA0V23QY6-KkY5beVmTNTQxaRTG75uWGsto4e0Vg5X2canvGz_klVTsp5lRxYG5n9EkHWmpWnB_OdQvNMUpL8tRff_ab4oufsO3hqbPBNPHmn6DqkKZgTLTuNf_N4oqtdo-qw/s320/006.JPG" wt="true" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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<div class="separator" style="clear: both; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuItFanZ6x5971jbrzzBZ3ZdmQlzVpg30w8PXAWntO0S9zYDPNzm-SpzFfIrr12vYDWcjc91utqo8Bp5nnAdAl2Pud5v_0CXUjlLbp_lBCDDKjle7EO3B4vdYGsc2-LCKPsNEjUjD6sDE/s320/015.JPG" wt="true" /></div><div class="separator" style="clear: both; text-align: center;">not sure if she is talking or yelling at Kate</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaZaBLvErYWUeal8OdHLn83ZDVA1uhyUsanSksGekmaBO9oa_Evgw1AEkOgmby-9PEhqYgu2oUsjR-XfgXOYq2tc42GTKDG_aCW8VKDz128JDCC0Obi9LLCzGb1KBq5-mnEfzchvss7R4/s1600/020.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaZaBLvErYWUeal8OdHLn83ZDVA1uhyUsanSksGekmaBO9oa_Evgw1AEkOgmby-9PEhqYgu2oUsjR-XfgXOYq2tc42GTKDG_aCW8VKDz128JDCC0Obi9LLCzGb1KBq5-mnEfzchvss7R4/s320/020.JPG" wt="true" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPvVv43W6HT3ER_eBGAe-LODHnZ7cP0TslLqcPtu0tBGtIUCbZFWH4f5yCMfIqHcJ6kYqfosD85QVP4YJyi2nMI3rXlygjewul24rFwBY4Mtpe5Qb7eaS6VzM1NE-rwRYf0-GJMt1nLek/s1600/026.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPvVv43W6HT3ER_eBGAe-LODHnZ7cP0TslLqcPtu0tBGtIUCbZFWH4f5yCMfIqHcJ6kYqfosD85QVP4YJyi2nMI3rXlygjewul24rFwBY4Mtpe5Qb7eaS6VzM1NE-rwRYf0-GJMt1nLek/s320/026.JPG" wt="true" /></a></div><div class="separator" style="clear: both; text-align: center;">always posing </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6VwjUTZEw-Xba2m0p_oIyoxwsHwLLXVXS-dTQe8FY4eY3473CRONTc7KPK6nswiAnP3uPvgDODk9SihkGiO1A0_I0B1IIAQfXZnXeaPZazTUYhoLNnRlzqgnlGvc3TF0i_TawrosK78I/s1600/012.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6VwjUTZEw-Xba2m0p_oIyoxwsHwLLXVXS-dTQe8FY4eY3473CRONTc7KPK6nswiAnP3uPvgDODk9SihkGiO1A0_I0B1IIAQfXZnXeaPZazTUYhoLNnRlzqgnlGvc3TF0i_TawrosK78I/s320/012.JPG" wt="true" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;">here's a cute quick video of Kylee trying to get Kate</div> <iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwXXsAszwnveZ2gk2XnybMB1fp2UvA2W3XZXhHTTdpxYwYPcqoBxxZdPPMW9fRotV5o4TUSHxyvRouE422IrA' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com2tag:blogger.com,1999:blog-5934500869133108321.post-82461605165831074322010-03-18T09:43:00.000-04:002010-03-18T09:43:21.309-04:00Changing Blog To PrivateI've decided to change this blog to private because their are so many jerks out their lately who think it is funny to take pics of kids with down syndrome and make a mockery out of them. So if you want to continue to do view the blog, email me at <a href="mailto:jedmunds02@yahoo.com">jedmunds02@yahoo.com</a> and i will be happy to give you authorization to do so. It makes it easier if you have a google account, but if you don't you can still view as a guest, but after 2 weeks you have to get a new request from me. I know it may seem silly but i really don't want everyone to have access to my girls pics(esp Kylee) and make a joke out of them. <br />
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Oh and today Kylee is 9 months old. She is still doing great. She had her swallow study done and it showed reflux and that she does aspirate on thin liquids(which means some of it goes to her lungs). So we just have to thicken her formula and just keep working on strengthing her oral muscles. Since we have thickened her formula she has actually started to take a lot more formula, which is great. Speaking of Kylee, gotta go, stinker thinks it is time to get up after only a 20 min. nap!Jeanettehttp://www.blogger.com/profile/05967847659703679524noreply@blogger.com3tag:blogger.com,1999:blog-5934500869133108321.post-19473537377159355582010-03-14T22:51:00.001-04:002010-03-14T23:28:26.596-04:00Look Who's Sitting!<div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH6iFnprMmkvUSvmtUEDx5eLJMBS1VYkPdqSs-6ANWf7tXH1SFlNOpV4aSq9bRM_vemltl-z8gpzeH6i3nMfjP6WiFo2J3MBQTn61i4NwoP7jZpgMbFI-NIsjxqsgralg5p_nQHE4J8L0/s1600-h/276.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH6iFnprMmkvUSvmtUEDx5eLJMBS1VYkPdqSs-6ANWf7tXH1SFlNOpV4aSq9bRM_vemltl-z8gpzeH6i3nMfjP6WiFo2J3MBQTn61i4NwoP7jZpgMbFI-NIsjxqsgralg5p_nQHE4J8L0/s320/276.JPG" vt="true" /></a></div>She has been sitting unsupported for a couple weeks now. She still is a little wobbly, but will balance herself well. She also has been working on moving around the room by way of rolling around and pivoting herself by using her tummy and her hands. We have been working on getting in the crawling position but it's very hard to get her hips to stay together. She also likes to scoot backwards. Poor Kate, she can't have anything of hers within Kylee's reach anymore, otherwise Kylee gets it and Kate says, "no, no, no." Not much else going on here, just the usual busy appointments. We have added 2 other dr's for Kylee to see and one other therapy. Thankfully the therapy is at home. She went to see the eye doctor and we found out that she is farsighted in the left eye and has an astigmatism, so her right eye is stronger than the left and we have to keep an eye on it and follow up with the eye dr in a couple months. She said it isn't to the point where she needs glasses but may need them in the future. She will also be going this tuesday for a swallow study test. This will tell if she is aspirating at all when she eats which can be more common with babies with down syndrome and also it will check for reflux which she has been spitting up alot lately. Next week she will go and have another hearing test. This time she will be sedated as it is more accurate. She initally failed in her left ear and it was thought to be due to fluid in her ear, so we will find out and then after that the ENT dr. will determine if he wants to place tubes in her ears. She is also going to be seeing an orthopedic dr for a few reasons, but mainly for the shape of her head due to the fact she has always preferred to have her head tilted to the one side(which i can't think of which side it is now). We have been doing stretches and getting her on her stomach as much as possible and her neck muscle has gotten stronger but we need to see if the dr thinks that the shape of her head will correct itself over time. Hopefully it will. Because of this the rest of her body has shifted and her physical therapist recommended getting her spine and hips checked out.<br />
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Sorry for all that boring stuff, but that is how exciting things are around here. Kate is still loving to play pretend with her dolls. In fact she asked me the other day if when she was 10 if she could have a baby! She was disappointed when i told her no. She has been excelling at school(if there is such a thing at pre-k). Her teachers are very impressed with how much she can read, as we are too. In fact i am trying to get her transferred to a different school when she goes to kindergarten as the school that we are in the district for is very old and has mold problems, but her teacher had said that the she would be alot more challenged at the newer school. A couple of the teachers have even said that if she were tested right now, she would be at a first grade level. I don't know where she got her smarts from, but there definitely not from me. We are thinking it is because she is a lefty.<br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBf_E6B2f4SzKwNW3L-XbGxIdfWXxpK4CIrDgyK_JRiIRKsdps9sxHQ56tQZCSPptjIxPMHfUtMK9nwKbUnjTtybW2q6pkvcX-DKno77LlYkvZ2YdVHzayvpgYXkIUnDfxqvtGuq4qXpA/s1600-h/041.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBf_E6B2f4SzKwNW3L-XbGxIdfWXxpK4CIrDgyK_JRiIRKsdps9sxHQ56tQZCSPptjIxPMHfUtMK9nwKbUnjTtybW2q6pkvcX-DKno77LlYkvZ2YdVHzayvpgYXkIUnDfxqvtGuq4qXpA/s320/041.JPG" vt="true" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5MsJvw1oI4QVIAs0zOYSUNJB7Us-K6vywuGpMCPVVKWOx4bIPoeVAfg6e430O_mBejdFGhkHRFPITHuW85FbN-Yl77QPs3KzItyWBZhObx_562ovWgE7IOWVcmatIiYRlrBaGHu6UQXo/s1600-h/018.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5MsJvw1oI4QVIAs0zOYSUNJB7Us-K6vywuGpMCPVVKWOx4bIPoeVAfg6e430O_mBejdFGhkHRFPITHuW85FbN-Yl77QPs3KzItyWBZhObx_562ovWgE7IOWVcmatIiYRlrBaGHu6UQXo/s320/018.JPG" vt="true" /></a></div><div class="separator" style="clear: both; text-align: center;">When i asked to take Kate's picture she immediately starts posing!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVHtnJkTlYM_e3vAsgtBC666K0zmiRLWr8uao6XEnvdzfFilBAAu1eolxItuYTq7_zJq7NUk5U_c9a6PPkUBS_2y-I-7vU_yftt5uEB8rIqhbtTeJM0DPn52gFMVfrxh0ENCQQ9Rj9x-w/s1600-h/052.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVHtnJkTlYM_e3vAsgtBC666K0zmiRLWr8uao6XEnvdzfFilBAAu1eolxItuYTq7_zJq7NUk5U_c9a6PPkUBS_2y-I-7vU_yftt5uEB8rIqhbtTeJM0DPn52gFMVfrxh0ENCQQ9Rj9x-w/s320/052.JPG" vt="true" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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