Friday, April 25, 2014

Duke 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.
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!

Wednesday, April 23, 2014

Idiopathic 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!

Wednesday, March 5, 2014

Spread 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!
John McGinley (Dr. Cox from scrubs) does a great job of explaining in the link below.
http://m.huffpost.com/us/entry/4896444

Saturday, March 1, 2014

Pseudotumor 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.

Wednesday, July 13, 2011

Blog Slacker

So, 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.

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.
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.
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.
Last year, we had a photo shoot for this great organization that offers free photo services to children with major illnesses or disabilities.  www.inspirationthroughart.org  Anyways, we had an amazing photographer, Melody through Snooky Smiles 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.




Kate right after her last tooth fell out and her new haircut
This is what happens to Lacy when Kate decides she would be a good ballerina!



Tuesday, February 8, 2011

Peter

Isn't he adorable?  This sweet boy is in an orphanage in Eastern Europe and he desperately needs your help.
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.... http://taylorvillethree21.blogspot.com/2011/02/urgent-update-on-peter.html
OK EVERYONE!!! The gorgeous little boy is named Peter, 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.

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. DONATE, DONATE ANYTHING YOU CAN. His family wants him home NOW, but they need YOUR help....please don't delay.

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.

There is $11,381.50 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, "THAT ONE day could literally be the day that saves Peter's life."

PURE LOVE GIVEAWAY <-----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 Reece's Rainbow

P.O. Box 4024

Gaithersburg, MD 20885

Friday, February 4, 2011

Happy 6th Birthday Kate!

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.

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.

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!

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!

Hopefully after the weekend, I will be able to post pics of the princess.

Tuesday, February 1, 2011

The Challenges Of Raising A Child With Down Syndrome

Often people wonder about the challenges that go along with raising a child with Down Syndrome, so I thought I would share my experiences.


  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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. 

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)

Anyone else care to share their challenges?

Friday, January 28, 2011

Worthy of Life

So 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....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.

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?  


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.

Friday, January 14, 2011

One Year Ago

Ok, so it was a year ago yesterday... Kylee had open heart surgery to repair multiple defects and did absolutely amazing!

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.


She is such a sweet, silly, beautiful, yet stubborn little girl!  We are so blessed to have her(and Kate) in our lives.

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.









Tuesday, January 11, 2011

Case Of The Mondays

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.


The girls had a great Christmas, although Kylee just preferred the wrapping paper over the presents.  

.  
Kate was very excited this year and counted down the days to Christmas.  
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.

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.

video
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.

Kylee got to meet her online "boyfriend!"  Bennett 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.
Bennett


holding hands

Arden, Bennett, Kylee, and Bennett's sister




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.


Thursday, December 9, 2010

An I-Pod Giveaway

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 HERE and get the full details.  Basically, you donate to this little sweet orphan's fund.





So, you donate to this little girl's adoption fund either via the link on Patti's blog or you can click HERE 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!
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.  

If Olga has a huge amount in her fund- bank on it- 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.

Please spread the word, and please pray for Olga.

Monday, November 29, 2010

A 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!

when one is smiling, the other is not!



oh how Kate loves to pose for the camera!








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).

Sunday, November 28, 2010

Tis The Season For Giving, Help Out A Child In Need

This 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!




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. 

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.

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. 

You can also check out her button on the side of my blog for updates on Melanie.


http://reecesrainbow.org/sponsorsader