If you are coming to the blog to see adorable pictures of Ella doing adorable baby things, just hit the little X in the upper right hand corner. There will be no pictures, there will be no snippets of all the wonderful, Susie-Homemaker Christmas things I have been doing to prepare for the jolly one's arrival. There will be no mentions of homemade wrapping paper, Christmas cards or matching pajamas for my family of 5.
It's not that I am not into Christmas, it is just that since Sunday, I have been running a fever. When I get sick, I tend to just push through it. I don't like to be sick, I don't like to spend time away from my routine. I like getting up, making coffee, vacuuming, feeding the baby, going to work, cuddling with the kids and enjoying my glass of wine once the monsters are tucked in. When I feel sick, I take some Tylenol and just keep going. That works well until you wake up, realize you have been running a fever of 103 - 104 for 2 straight days, you appear to be delusional and no amount of Tylenol is making it better. Then, you decide to go to the doctor.
BUT, I can't ever make these decisions during normal business hours, so I have to go to urgent care. Urgent care must not deal with fevers of the 104.4 variety very often (or I was that scary looking) so they refused to give me Tamiflu and forced me to the ER.
I was thankful for my friend Erin who had the duty of schlepping me to the hospital (Mike was at home dealing with another sick child and the 2 well ones). Finding out if you have the flu is the most unpleasant experience ever. With all the advances in medicine, I find it hard to believe that the only way you can find out if I have the flu is to stick a giant q tip up my nose, down my throat and leave it there for 10 seconds. AWFUL. Best part, once it is confirmed you have it, you have to do the test again for the states records. I did have the flu, I was prescribed Tamiflu and sent on my way.
Since I got home from the hospital, I have done nothing but lay in my bed, convince myself I am dying and be miserable. I have also thought about all the Christmas things we won't do this year and I have been praying that I feel well enough by Christmas morning to at least kiss my own children (on the hand, of course, this flu bug can last for 2 weeks or some nonsense like that) and hand out the gifts that I rushed around for the day before the flu took over my life.
Ryan also has the flu. He got Tamiflu at urgent care. They only force grown women wearing 2 sweatshirts, a hat and appearing to be homeless to the ER. He was at home all snug while I was getting my sinuses swabbed. Only problem with Ryan having the flu? He's allergic to Tamiflu. Something we didn't know until his nanny noticed his eye was swollen shut. Called the dr. and sure enough, it's a sign of an allergic reaction to Tamiflu. Of course it is. The medicine was expensive, why wouldn't we have to stop taking it after 2 doses!
Today is day 5 for me and day 3 for Ryan of being sick. I am ready for my life back.
The other thing that really sucks about being sick. No one wants to be near me. The only person that wants to be near me is my adorable daughter and due to her fragile little immune system, I haven't even been in the same room with her in 5 days. I snuck a peek at her today and I swear she has grown 2 feet and gained 5 lbs in the last 5 days. She'll be pulling up on her own by the time I am done with my influenza quarantine.
So, there you have it. I have been stuck in my room, dreaming all sorts of crazy, fever induced dreams. Mike has been Mr. Mom, Erin took me to the ER, my mom has been sick but managed to make it to the house the one time Ryan decides to puke all over the couch and won the fun job of cleaning that mess up and my mother in law is taking care of my sister in law who is recovering from surgery (was supposed to be my job, but the dr. thought it was best if the flu patient didn't take care of the surgery patient). If Ryan wasn't keeping track of the days till Christmas on some Advent like ring thing he made himself (because Mom forgot to buy him a real Advent calendar this year - Mom of the year I sure am!) I would move Christmas back a week so we could could actually enjoy it!
I am going to get some sleep and in the AM salvage what I can to make Christmas grand still. I had big hopes for this year, being Ella's first Christmas and all... there's always her birthday..
I feel like I have to leave the blog with a picture but dont' have anything real original tonight, so here is yet another Christmas picture. I promise Ella has more than 1 outfit in her closet...
A blog about finding our way with Down syndrome, 3 kids and a crazy life we wouldn't trade for anything!
Thursday, December 23, 2010
Thursday, December 16, 2010
Honey Bear Trainers, maroon spoons, SEE - oh the things we now know (kinda)!
Last night, I came home from work and Reed said to me - Mom, Ella's nose is snowing. This little sentence explains Reed to a tee. He has no concept of using correct sayings, of time, of anything that isn't inside Reedworld. Reed loves to wrestle, eat broccoli and make messes. Reed loves his sister but can't be bothered with helping change her diaper, but ask him to sing her a song and that boy sings a mean rendition of Rudolph the Red Nosed Reindeer (with dance moves). He is the reason that I am terrified of us using sign language.
The sign language we are learning is called Signing Exact English or SEE. It is different than ASL - If you have heard of "baby signs" that is basically what we are doing, but we are going a little above most baby signs used and adding things that she may need as she gets into school but most babies don't use (like computer, etc). Learning SEE is tough enough. Trying to implement it into our routine when we are talking with Ella is even tougher. Imagine, I am on the phone, Ryan is throwing a football inside the house, Reed wants water, and I am getting ready to change Ella's diaper. The last thing I remember is to sign to her that it is time to change her diaper.
Then there is the Reed factor to using SEE. Reed is trying to learn, but the poor little boy just doesn't have any urge to sit and learn with us. I teach him how to say mommy - he signs back something that may appear to say turkey if you took it literally. We teach him sit, he turns it into two swords fighting and all the sudden I am being poked in the eye. I am sure that if we are out somewhere and Reed starts using SEE, he will most likely offend someone by using the wrong signs. He uses the word snowing when referring to a running nose. He can not be trusted to not mix up the sign for milk and poop..
Other hot topics in my house these days? Honey Bear Trainers and Maroon Spoons. Something that most parents don't know - There is an entire universe dedicated to helping kids eat and drink like their friends. I had no idea. Our new therapist asked me if we had a Honey Bear Trainer. A really big part of me wanted to say yes as to not appear behind but if she asked me to get it, I was at a loss as to where I would find a honey bear in my pantry, so I said no. She then made me feel like quite the idiot for not knowing that honey comes in these little bear shaped bottles. I then had a quick lesson all about a bottle, made for honey, shaped like a bear, that has been modified to help kids learn to drink from a straw. Who knew! I was told we need this modified honey pot by next week. I was on it! The internet gave me directions to make our own Honey Bear Trainer or how to purchase one with 2 easy clicks. I chose the 2 easy clicks option and we are now the proud owners of several bear shaped bottles with straws sticking out of their heads. I gave one to Ella to play with and she immediatly threw it down and played with her socks. The therapist has her work cut out for her next week...
We were also told to get a maroon spoon. Maroon spoons seems to be in hot demand as my search turned up only used ones on Amazon.com. If you remember, I vaccum daily so I am not really the type to buy used spoons to feed my baby with. I am on a backorder list for new maroon spoons. What is a maroon spoon? Well, it appears to be maroon and a spoon. Other than that and being 4 times more expensive than Ella's current spoons, I am not sure the purpose. When it finally gets here I'll test it out and let you know.
When I think back to my life just a year ago, I would never of guessed I would have purchased 4 bear shaped honey pots to serve as sippy cups or spent an hour searching for a maroon spoon or asked my 7 year old how you sign dog in order to tell my 4 year old to stop barking when he wants to sign the word dog. I wouldn't of imagined that when a friend gives me 3 christmas gifts for my kids, I wonder which of my boys she got 2 things for (imagine how silly I felt when I got home and realized I now have 3 kids, thus 3 gifts!).
Here is Ella with Santa. Hopefully Santa told her how he plans to finish the Christmas shopping for her procrastinating parents!
The sign language we are learning is called Signing Exact English or SEE. It is different than ASL - If you have heard of "baby signs" that is basically what we are doing, but we are going a little above most baby signs used and adding things that she may need as she gets into school but most babies don't use (like computer, etc). Learning SEE is tough enough. Trying to implement it into our routine when we are talking with Ella is even tougher. Imagine, I am on the phone, Ryan is throwing a football inside the house, Reed wants water, and I am getting ready to change Ella's diaper. The last thing I remember is to sign to her that it is time to change her diaper.
Then there is the Reed factor to using SEE. Reed is trying to learn, but the poor little boy just doesn't have any urge to sit and learn with us. I teach him how to say mommy - he signs back something that may appear to say turkey if you took it literally. We teach him sit, he turns it into two swords fighting and all the sudden I am being poked in the eye. I am sure that if we are out somewhere and Reed starts using SEE, he will most likely offend someone by using the wrong signs. He uses the word snowing when referring to a running nose. He can not be trusted to not mix up the sign for milk and poop..
Other hot topics in my house these days? Honey Bear Trainers and Maroon Spoons. Something that most parents don't know - There is an entire universe dedicated to helping kids eat and drink like their friends. I had no idea. Our new therapist asked me if we had a Honey Bear Trainer. A really big part of me wanted to say yes as to not appear behind but if she asked me to get it, I was at a loss as to where I would find a honey bear in my pantry, so I said no. She then made me feel like quite the idiot for not knowing that honey comes in these little bear shaped bottles. I then had a quick lesson all about a bottle, made for honey, shaped like a bear, that has been modified to help kids learn to drink from a straw. Who knew! I was told we need this modified honey pot by next week. I was on it! The internet gave me directions to make our own Honey Bear Trainer or how to purchase one with 2 easy clicks. I chose the 2 easy clicks option and we are now the proud owners of several bear shaped bottles with straws sticking out of their heads. I gave one to Ella to play with and she immediatly threw it down and played with her socks. The therapist has her work cut out for her next week...
We were also told to get a maroon spoon. Maroon spoons seems to be in hot demand as my search turned up only used ones on Amazon.com. If you remember, I vaccum daily so I am not really the type to buy used spoons to feed my baby with. I am on a backorder list for new maroon spoons. What is a maroon spoon? Well, it appears to be maroon and a spoon. Other than that and being 4 times more expensive than Ella's current spoons, I am not sure the purpose. When it finally gets here I'll test it out and let you know.
When I think back to my life just a year ago, I would never of guessed I would have purchased 4 bear shaped honey pots to serve as sippy cups or spent an hour searching for a maroon spoon or asked my 7 year old how you sign dog in order to tell my 4 year old to stop barking when he wants to sign the word dog. I wouldn't of imagined that when a friend gives me 3 christmas gifts for my kids, I wonder which of my boys she got 2 things for (imagine how silly I felt when I got home and realized I now have 3 kids, thus 3 gifts!).
Here is Ella with Santa. Hopefully Santa told her how he plans to finish the Christmas shopping for her procrastinating parents!
Tuesday, December 14, 2010
Sometimes, I say the wrong thing..
Going through a life changing event like having a baby born with special needs changes you. It makes you a little more cautious to tell people "don't worry, I'm sure it's nothing".
I talked with a friend who is having a baby. Their ultrasound showed a soft marker for perhaps a genetic condition. As he was telling me, I couldn't help but think back to my own ultrasound and being told "don't worry, we know you have a marker for Down syndrome, but everything looks totally fine". I remember people telling us not to worry, everything was going to be fine, she was going to be perfect and healthy. I remember searching google for anything I could find on Echogenic Foci and being so reassured that it was so often nothing. I remember the paper the dr. gave me explaining what an EF was and how it talked about Down syndrome and how I ignored it because well, everyone said it was going to be ok.
I am thankful for those people who told me it was all going to be OK. I am thankful for my own blissfull ignorance to what it could be, I am thankful (well, almost) for the Dr. telling us that Ella didn't have Down syndrome. Why? Because for 98% of the pregnant population, it is going to be OK and there is no reason to spend a pregnancy worrying about the off chance that we are the 2% The minute after our level 2 US was complete, I didn't worry about Down syndrome again until 8:30 AM on February 16th.
Today, when talking with my friend, I wasn't one of those "don't worry, it is nothing" people. I was exactly the opposite of what I was thankful for during my own pregnancy. I said what came to my mind. I told him that even if it is something, it doesn't matter, you will still love that baby like every other baby. I said that it is good that he has 2 other kids so he doesn't have the "new" parent jitters. I told him that I wouldn't change my life now for anything. I told him that everyone told me it was "nothing" and well, it was "something".
After I hung up I felt awful. This poor guy. Calls to tell me about work, mentions he has a baby on the way and had a not so "perfect" ultrasound and I can't just say something like "don't worry, it happens all the time, your baby will be fine". I have to break out my own story, my own "don't worry" predictions. I probably sent him worrying for the next 2 hours and well, for most, it is going to be OK, there isn't anything to worry about. Our story isn't the norm, but when I talk to people, I forget that. I am so passionate about how yes, the initial shock was hard, but you will survive, you will grow stronger than you ever thought. I can't help but be the other side of the coin, not for the negativity, but for people to realize that the other side of the coin isn't such a bad thing.
I leave you with my version of the other side of the coin - a little blurry because she never stops moving...
I talked with a friend who is having a baby. Their ultrasound showed a soft marker for perhaps a genetic condition. As he was telling me, I couldn't help but think back to my own ultrasound and being told "don't worry, we know you have a marker for Down syndrome, but everything looks totally fine". I remember people telling us not to worry, everything was going to be fine, she was going to be perfect and healthy. I remember searching google for anything I could find on Echogenic Foci and being so reassured that it was so often nothing. I remember the paper the dr. gave me explaining what an EF was and how it talked about Down syndrome and how I ignored it because well, everyone said it was going to be ok.
I am thankful for those people who told me it was all going to be OK. I am thankful for my own blissfull ignorance to what it could be, I am thankful (well, almost) for the Dr. telling us that Ella didn't have Down syndrome. Why? Because for 98% of the pregnant population, it is going to be OK and there is no reason to spend a pregnancy worrying about the off chance that we are the 2% The minute after our level 2 US was complete, I didn't worry about Down syndrome again until 8:30 AM on February 16th.
Today, when talking with my friend, I wasn't one of those "don't worry, it is nothing" people. I was exactly the opposite of what I was thankful for during my own pregnancy. I said what came to my mind. I told him that even if it is something, it doesn't matter, you will still love that baby like every other baby. I said that it is good that he has 2 other kids so he doesn't have the "new" parent jitters. I told him that I wouldn't change my life now for anything. I told him that everyone told me it was "nothing" and well, it was "something".
After I hung up I felt awful. This poor guy. Calls to tell me about work, mentions he has a baby on the way and had a not so "perfect" ultrasound and I can't just say something like "don't worry, it happens all the time, your baby will be fine". I have to break out my own story, my own "don't worry" predictions. I probably sent him worrying for the next 2 hours and well, for most, it is going to be OK, there isn't anything to worry about. Our story isn't the norm, but when I talk to people, I forget that. I am so passionate about how yes, the initial shock was hard, but you will survive, you will grow stronger than you ever thought. I can't help but be the other side of the coin, not for the negativity, but for people to realize that the other side of the coin isn't such a bad thing.
I leave you with my version of the other side of the coin - a little blurry because she never stops moving...
Monday, December 13, 2010
Happy Birthday to my Dad!
Time these days, it flies. So fast that I think I have 6 weeks till Christmas still and all the sudden we are at less than 2 weeks till the big day. My christmas list is still a mile long, the kids are Santa crazy and while one would think work would slow down this time of year, it hasn't. Life is one crazy mess of kids, laundry, work, cookies, therapists and well, I wouldn't change it, but I would like a day to sleep past 6 AM..
Tomorrow is my Dad's birthday. My dad and I have a really strong relationship. He is my sounding board. He will listen (and he never interupts me, he would listen for hours if I made him) and then, he will tell me what he feels. It isn't always what I want to hear and I don't always take his advice (I'm a little strong willed) but I always take what he says and keep it with me. I like to think my dad thinks I am a good kid and is proud of me and what I have done with my life so far. I am pretty lucky to have a dad like him, even though he lives in San Diego and I am here, I know he is a phone call away whenever I need him. After having Ella, I remember thinking I didn't want to tell my Dad she had Down syndrome. I was so worried he would be sad and I don't like to make my dad sad. He wasn't sad at all. He was on the next plane to Phoenix and pretty darn amazing. He let me cry, he told me all the things he had read. He asked the right questions and held Ella and loved her like any grandpa loves their granddaughter, and since the day he first met my little Ella, she has had him wrapped around her little finger.Happy Birthday Daddy! I love you!
Ella had a goal to reach by Christmas. She had to be sitting, not getting into sitting on her own, but when placed into a sitting position, it was important that she be able to stay. Well, Ms. Ella has been sitting since Thanksgiving! Our next goal is crawling or at least getting on her knees and rocking.
Have I mentioned that encountering other moms with babies Ella's age is quite the experience these days? They will say things like - "is she crawling" or other totally appropriate questions given her age and I am faced with this dilemma of what to say to them. Normally it is not someone I know, so I don't really think it is appropriate to go into Ella's life history right there at Target, nor do I think I want to catch this poor parent off guard, but I also don't want them to think I am an evil parent who never lets her out of her crib, thus her lack of crawling abilities. I have perfected a smile nod thing and I am thankful I have a 4 year old who normally can't go more than 1 minute without hurting himself, getting lost or breaking something to use as my distraction. It isn't that I mind telling people Ella has Down syndrome, but I don't really want to get into it with the waitress at Outback, so for now, we smile and nod.
I would leave you with a picture of Ella, but of course, I don't have any on this computer. Next time! I promise, although I learned to not promise when next time is.. :)
Tomorrow is my Dad's birthday. My dad and I have a really strong relationship. He is my sounding board. He will listen (and he never interupts me, he would listen for hours if I made him) and then, he will tell me what he feels. It isn't always what I want to hear and I don't always take his advice (I'm a little strong willed) but I always take what he says and keep it with me. I like to think my dad thinks I am a good kid and is proud of me and what I have done with my life so far. I am pretty lucky to have a dad like him, even though he lives in San Diego and I am here, I know he is a phone call away whenever I need him. After having Ella, I remember thinking I didn't want to tell my Dad she had Down syndrome. I was so worried he would be sad and I don't like to make my dad sad. He wasn't sad at all. He was on the next plane to Phoenix and pretty darn amazing. He let me cry, he told me all the things he had read. He asked the right questions and held Ella and loved her like any grandpa loves their granddaughter, and since the day he first met my little Ella, she has had him wrapped around her little finger.Happy Birthday Daddy! I love you!
Ella had a goal to reach by Christmas. She had to be sitting, not getting into sitting on her own, but when placed into a sitting position, it was important that she be able to stay. Well, Ms. Ella has been sitting since Thanksgiving! Our next goal is crawling or at least getting on her knees and rocking.
Have I mentioned that encountering other moms with babies Ella's age is quite the experience these days? They will say things like - "is she crawling" or other totally appropriate questions given her age and I am faced with this dilemma of what to say to them. Normally it is not someone I know, so I don't really think it is appropriate to go into Ella's life history right there at Target, nor do I think I want to catch this poor parent off guard, but I also don't want them to think I am an evil parent who never lets her out of her crib, thus her lack of crawling abilities. I have perfected a smile nod thing and I am thankful I have a 4 year old who normally can't go more than 1 minute without hurting himself, getting lost or breaking something to use as my distraction. It isn't that I mind telling people Ella has Down syndrome, but I don't really want to get into it with the waitress at Outback, so for now, we smile and nod.
I would leave you with a picture of Ella, but of course, I don't have any on this computer. Next time! I promise, although I learned to not promise when next time is.. :)
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