December 31, 2011
Last Post of the Year
Happy New Year! Thank you so much for taking the time to read this blog and sharing in our lives. Wishing you the best in 2012.
December 30, 2011
December 28, 2011
Finally Seeking Help
Our beautiful, sunny Rachel girl has a yucky side to her. It's something we've been battling for a while but within these last 6 months it just progressively gotten worse. She first began crying when other babies would cry. Then when other babies would cry or squeal. Now it's when any child cries, squeals or otherwise makes a noise she doesn't like. And it's not a little cry that stops after a minute. No. It can go on for thirty minutes to an hour. Back arching, rolling on the ground, snotty crying. If we are home when it happens, I usually have to take her upstairs to her crib where she promptly falls asleep from exhaustion.
As if this wasn't enough to deal with and try to figure out, a couple weeks before her tonsil surgery, she started waking up from naps crying uncontrollably which was so not like her. I thought it was a phase. We try just letting her be. We try rocking her but most of the time I can't do that because I have Charlie to take care of. Sometimes the rocking calms her down but then as soon as you go to put her down she starts all over again. I usually end up having to just leave her screaming and crying for up to an hour and a half sometimes because there is nothing else I can do. TV doesn't work. Snacks or drinks don't work. Nothing I have thought of works. And I am done. Rachel has to be able to get along with other kids without breaking down. She is going to start preschool in September and I am dreading it because I just know how she will act. She has to be able to nap and wake up normally. She has to be able to play along other kids.
I put in a call to a pediatric behavior therapist. While they do not treat children as young as Rachel, she directed me to call our pediatrician to get a referral to an OT who can help us get some tools to help Rachel. I hope to hear something from them tomorrow about who we are to meet and when. I am past ready to learn how to deal with these issues and how to help Rachel overcome something that will hinder her progress in life. They are not night terrors. It is not reflux. It is something behavior wise that I have not been able to figure out how to get her to work past. If anyone has ever dealt with something like this, please let me know.
As if this wasn't enough to deal with and try to figure out, a couple weeks before her tonsil surgery, she started waking up from naps crying uncontrollably which was so not like her. I thought it was a phase. We try just letting her be. We try rocking her but most of the time I can't do that because I have Charlie to take care of. Sometimes the rocking calms her down but then as soon as you go to put her down she starts all over again. I usually end up having to just leave her screaming and crying for up to an hour and a half sometimes because there is nothing else I can do. TV doesn't work. Snacks or drinks don't work. Nothing I have thought of works. And I am done. Rachel has to be able to get along with other kids without breaking down. She is going to start preschool in September and I am dreading it because I just know how she will act. She has to be able to nap and wake up normally. She has to be able to play along other kids.
I put in a call to a pediatric behavior therapist. While they do not treat children as young as Rachel, she directed me to call our pediatrician to get a referral to an OT who can help us get some tools to help Rachel. I hope to hear something from them tomorrow about who we are to meet and when. I am past ready to learn how to deal with these issues and how to help Rachel overcome something that will hinder her progress in life. They are not night terrors. It is not reflux. It is something behavior wise that I have not been able to figure out how to get her to work past. If anyone has ever dealt with something like this, please let me know.
December 21, 2011
December 19, 2011
All Clear
December 15, 2011
A Day of Appointments
Yesterday, Rachel and I spent some quality time together going from appointment to appointment. Thankfully, she was in a pretty good mood and didn't put up too much of a fuss.
First up was a blood draw. We need to get her thyroid checked (it's a yearly thing) and some other blood count stuff to check on her overall health for her pediatrician and to see how her kidneys are doing. She has her routine 6 month check up with her kidney doc January 3rd so we had to get that blood work to him before hand. Nothing like knocking out two birds with one stone. She hated being held down for the blood draw but at soon as it was over she was ok and running towards the door. (As I was typing this the pediatricians office called and said the blood work looked great. Yay! Now we just need to get the OK from the kidney doc.)
After that we went into the new Madison Hospital for an x-ray of her neck. Kids with Down syndrome have a higher chance of issues with their neck development. If it doesn't develop properly, just a somersault can lead to paralysis so that is something we need cleared before Rachel can get into those type of activities. (Fun right?) This hospital only has the ER and imaging department open right now. While we were in the waiting room there was a young girl next to us who was set to get an MRI. She had two large bottles of barium "smoothie" to drink. GAG. I cannot even imagine having to do that. Blech. Anyway, the x-rays went fine for Rachel. The tech held her on her lab so the machine could get a profile shot. I had to stand in front of Rachel to make her look straight ahead, up and down. I'm guessing we'll hear something about that either tomorrow or next week.
The last stop on our list was a follow-up with her ENT. We barely got there on time but for once we were seen within 20 minutes and out the door. The Doctor had his scrubs on so I'm guessing he was in a rush to get back to the hospital. The Doctor said everything looked great and we had no need to go back to him unless something funky came up. That is what I like to hear. While it seems like we are constantly at doctors appointments for her, we really aren't. Most of these appointments are yearly or every 6 months. Time just flies by so quickly it's like we were just there.
These pictures are an example of that. I can't believe she was ever that little. Our little Rachel girl.
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| On our way! |
First up was a blood draw. We need to get her thyroid checked (it's a yearly thing) and some other blood count stuff to check on her overall health for her pediatrician and to see how her kidneys are doing. She has her routine 6 month check up with her kidney doc January 3rd so we had to get that blood work to him before hand. Nothing like knocking out two birds with one stone. She hated being held down for the blood draw but at soon as it was over she was ok and running towards the door. (As I was typing this the pediatricians office called and said the blood work looked great. Yay! Now we just need to get the OK from the kidney doc.)
After that we went into the new Madison Hospital for an x-ray of her neck. Kids with Down syndrome have a higher chance of issues with their neck development. If it doesn't develop properly, just a somersault can lead to paralysis so that is something we need cleared before Rachel can get into those type of activities. (Fun right?) This hospital only has the ER and imaging department open right now. While we were in the waiting room there was a young girl next to us who was set to get an MRI. She had two large bottles of barium "smoothie" to drink. GAG. I cannot even imagine having to do that. Blech. Anyway, the x-rays went fine for Rachel. The tech held her on her lab so the machine could get a profile shot. I had to stand in front of Rachel to make her look straight ahead, up and down. I'm guessing we'll hear something about that either tomorrow or next week.
The last stop on our list was a follow-up with her ENT. We barely got there on time but for once we were seen within 20 minutes and out the door. The Doctor had his scrubs on so I'm guessing he was in a rush to get back to the hospital. The Doctor said everything looked great and we had no need to go back to him unless something funky came up. That is what I like to hear. While it seems like we are constantly at doctors appointments for her, we really aren't. Most of these appointments are yearly or every 6 months. Time just flies by so quickly it's like we were just there.
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| Rachel at the ENT 5/18/2010 |
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| Rachel at the ENT 12/14/2011 |
December 12, 2011
December 9, 2011
Two Year Check-Up
We had Rachel's two year check-up today. Yeah, I know she was born in September and I know it's now December but the pediatrician she sees doesn't seem to care as long as she goes within the year. Crazy, I know. Anyway, we went through a bunch of things but over all he was very pleased with her progress. She's grown in both weight and length and if you go by her adjusted age, she's pretty average on the Ds growth charts. The pediatrician also had us fill out a developmental chart that tracks your child's progress. At first I was given the one for 2-3 year olds and I knew right off the bat that she wouldn't get anything on it. So, they gave us the 12-24 month one instead. Rachel fell around 18 months developmentally. At lot of what held her back was her lack of speech. I knew it would. No big surprise there. We are working on that though. Her speech therapist keeps saying the words will come but I have a gut feeling there is something more behind her lack of words. I guess we'll find out as the months come. We also have some orders to get blood drawn and an x-ray of her neck. We'll do that next Wednesday after her follow-up with the ENT.
Other than the never ending doctors appointments for both kids, we are doing pretty good. Charlie still doesn't sleep more than 4 hours at a time over night and 2 during the day but we'll take it. At least he's happy when he is awake now. Rachel is much better since having her tonsils and adenoids taken out. She fell asleep in the car today with her mouth closed. That hasn't happened in a long time. She didn't even shift at all in her sleep to get air. How amazing that was! They completely adore each other, by the way. Charlie's eyes never leave Rachel as she races around the room and Rachel always comes over to see Charlie and pat him nicely. I know they are going to be quite the pair.
Other than the never ending doctors appointments for both kids, we are doing pretty good. Charlie still doesn't sleep more than 4 hours at a time over night and 2 during the day but we'll take it. At least he's happy when he is awake now. Rachel is much better since having her tonsils and adenoids taken out. She fell asleep in the car today with her mouth closed. That hasn't happened in a long time. She didn't even shift at all in her sleep to get air. How amazing that was! They completely adore each other, by the way. Charlie's eyes never leave Rachel as she races around the room and Rachel always comes over to see Charlie and pat him nicely. I know they are going to be quite the pair.
December 2, 2011
Who Am I?
This was me.
This was my favorite "me".
I was so healthy, in shape and sure of myself. These days, I'm only one out of the three. And sometimes if you speak to me on days when both kids are screaming, I'm probably zero out of three. I miss this person but I'm having a hard time getting her back. It's hard enough finding time to put music on my shuffle (yes, shuffle) none the less finding time to actually exercise. I have a free three month gym membership that the hospital gave me at discharge. That was almost 4 months ago. I have to use it within the next 4 months or it expires. Every couple weeks I think, "Oh yeah, I have that thing! I need to start going!" and every time as soon as I have that thought, it gets eclipsed by something else like laundry, bottles or meals. I know I need to "find" the time. But some days I honestly don't have the energy even though in the back of my head I know exercise is EXACTLY what is needed. For those of you who have fallen off (far off) the exercise wagon, have gotten back on and who have two or more kids, how do you find the time to exercise? When do you go? How do you find the energy to get up off the couch and go?
I was so healthy, in shape and sure of myself. These days, I'm only one out of the three. And sometimes if you speak to me on days when both kids are screaming, I'm probably zero out of three. I miss this person but I'm having a hard time getting her back. It's hard enough finding time to put music on my shuffle (yes, shuffle) none the less finding time to actually exercise. I have a free three month gym membership that the hospital gave me at discharge. That was almost 4 months ago. I have to use it within the next 4 months or it expires. Every couple weeks I think, "Oh yeah, I have that thing! I need to start going!" and every time as soon as I have that thought, it gets eclipsed by something else like laundry, bottles or meals. I know I need to "find" the time. But some days I honestly don't have the energy even though in the back of my head I know exercise is EXACTLY what is needed. For those of you who have fallen off (far off) the exercise wagon, have gotten back on and who have two or more kids, how do you find the time to exercise? When do you go? How do you find the energy to get up off the couch and go?
December 1, 2011
Growing Up
Our Rachel girl. She has changed so much in the six months since we moved to Alabama.
She went from being our little baby, from just taking her first steps, to a very capable little girl. These last few months since Charlie was born we have seen huge growth in her development. She has many signs.
She can tell us what she wants to eat, we can ask her if it's nap time and in her own way she will let us know that too. I can't tell you how exciting that is! She knows when she needs a nap! She's learned how to eat her snack out of a cup without dumping it or taking huge handfuls at a time.
Rachel knows the right way to hold a book and will bring one to us so we can read it to her. She can climb up stairs and slide down slides.
She catches on to how things work much more quickly too. Rachel is very much her own person and it's really heart warming to see. But then, I'm giving her a bath and she is just so perfect and sweet and I start thinking about the future. I don't want her to grow up. I wish she could just stay this way forever. I keep telling myself to remember how she is because in another 6 months, she will have changed even more. I'm not ready.
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taken 3 days before we moved |
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| blowing a kiss |
Rachel knows the right way to hold a book and will bring one to us so we can read it to her. She can climb up stairs and slide down slides.
She catches on to how things work much more quickly too. Rachel is very much her own person and it's really heart warming to see. But then, I'm giving her a bath and she is just so perfect and sweet and I start thinking about the future. I don't want her to grow up. I wish she could just stay this way forever. I keep telling myself to remember how she is because in another 6 months, she will have changed even more. I'm not ready.
November 25, 2011
Thanksgiving Day Flashback
Our first Thanksgiving as a family - November 2009
It's hard to believe that the beautiful, two year old little girl we celebrated Thanksgiving with yesterday was once so little and fragile.
We are glad to have you back to your happy self, Rachel girl!
November 19, 2011
What a Week.
It's been a long week of nothing but snot, spit, medicine and crying coming from our Rachel girl. And it's still going....big girl is still in major pain without a heavy pain medication. We've tried just Tylenol but it does not work. I called her pediatrician to get a refill on her pain meds and he seemed concerned that she is still in so much pain after a week. He wants us to call the ENT's service and see what they would like us to do. Ugh. I just want my girl to get better. :(
You can see from this photo how tired she is. I don't know how we managed to get a smile. She is so beat up from lack of sleep and crying and being in pain. She's lost weight too and I hate seeing her so skinny. And her hair? Well, when she is upset and hurting all the stuff coming out of her nose and mouth gets smeared into it. She's had to have a bath every night this week. Come back to us Rachel girl. I miss your wild ways.
You can see from this photo how tired she is. I don't know how we managed to get a smile. She is so beat up from lack of sleep and crying and being in pain. She's lost weight too and I hate seeing her so skinny. And her hair? Well, when she is upset and hurting all the stuff coming out of her nose and mouth gets smeared into it. She's had to have a bath every night this week. Come back to us Rachel girl. I miss your wild ways.
November 18, 2011
In a Special Needs Home
Every once in a while, I realize how my life is probably a little different than that of a mom who has typical children. I consider myself a mom to TWO special needs kids right now...Charlie's severe milk allergy certainly qualifies in my mind and it's very likely that he'll continue to be allergic to milk and possibly other foods as well. Anyway, I'm pretty sure that most households do not have a industrial sized pump of food thickener and special order amino acid formula on their counters.
Now, I realize this isn't a huge deal and that there are plenty of you out there who are going "Oh yeah? How about having 'XYZ' in your house?" So go ahead, send me a pic and share your story. I'd like to do a little feature on items used by children with special needs. I think it will be a good way for others to learn what is out there and maybe even help each other out. My email address is maggie (dot) fluck @ hotmail (dot) com. Can't wait to hear from you!
November 15, 2011
Rachel and Friends
I have been trying to decide on what to do about Rachel and Friends. I originally started it to donate items to families in the NICU at Women's Hospital in Greensboro, NC and Brenner Children's Hospital in Winston-Salem, NC. These were the two hospitals that Rachel was a patient in. Now that we are in Alabama, I have no connection to the NICU here even though Charlie was born in one of the hospitals. Because I haven't decided on how to proceed, I am going to just send out a box to Women's Hospital in Greensboro this year. I have a connection to the Family Support Network there. If you would like to make a donation, you can send any items to me (just email me at maggie (dot) fluck @ hotmail (dot) com for our address) OR you can donate the items directly to the Family Support Network. Just be sure to attach a note saying you are participating with Rachel and Friends. Here is a list of items currently needed for families of babies in the NICU at Women's. Please help if you can. Small gestures are greatly appreciated by families of babies in the NICU. Thank you to those of you who have donated in the past. I hope to start up bigger and better next year with a new direction!
Surprise! It's a Tube!
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| A bear the hospital gave her... |
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| trying to get out of bed because she saw me with the camera |
Now here is some eye candy to finish off this post...
November 13, 2011
3 Month Old Charlie
"Little" man turned 3 months on Saturday. We celebrated early with a trip to the pediatrician on Friday. He had croup and there wasn't any way I was waiting it out over the weekend and then have to go to the ER instead. The bright side of that appointment? I got his weight for his baby book. The boy was 17 pounds, 3 ounces! That is off the charts. Really, he is huge. I'm not making this up. Anyway, I got him at a good moment and snapped these pictures of him to commemorate the moment. He is a handsome little devil if I do say so myself.
Rachel has her tonsillectomy and adenoidectomy tomorrow morning at 9am so please keep her in your thoughts. It's going to be hard seeing my little smiley girl in pain. Maybe send some good thoughts my way too.
Rachel has her tonsillectomy and adenoidectomy tomorrow morning at 9am so please keep her in your thoughts. It's going to be hard seeing my little smiley girl in pain. Maybe send some good thoughts my way too.
November 11, 2011
SICK
So, the wonderful trip to Sci-Quest sent us home with a parting gift....germs. Yeah, I, Rachel and Charlie have been sick with the snots since Tuesday. Rachel has been the speediest to recover. I think it's because she uses Nasonex. But even with boogies running down her face, she still usually has a smile.
Charlie on the other hand HATES even the slightest booger in his nose. Wow, that little guy just flips. His little cold turned into croup. It started today after his naps and I took him right in to the Pediatrician because there wasn't any way I was waiting until after the weekend and taking the chance we had to go to the ER. Now we have meds and things should be turning better for him shortly. I am still shaking it off. I'm not huge on taking medicine if I think I can muddle through it. So far, so good. I hope everyone is feeling almost 100% by Sunday. We're going to get a family picture taken. I thought it would be a good idea to get one before Charlie is no longer an infant!
On Monday, Rachel will be going into the hospital to have her tonsils and adenoids removed in the hopes that it will help her sleep better. She's always had some sleep apnea but over the last 2 months it's gotten much worse to where she is constantly tossing and turning throughout the night. You can hear her banging her head and legs against the bars as she tries to find a position that allows her to breath better. It's terrible. Her ENT said that on a scale of 0-4 (4 meaning the tonsils touch), Rachel's are a 3. I'm looking forward to her being more comfortable at night and sleeping better, but I hate that we have to put her through this. It already is killing me thinking about her being in pain.
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| The best part of mornings... |
Charlie on the other hand HATES even the slightest booger in his nose. Wow, that little guy just flips. His little cold turned into croup. It started today after his naps and I took him right in to the Pediatrician because there wasn't any way I was waiting until after the weekend and taking the chance we had to go to the ER. Now we have meds and things should be turning better for him shortly. I am still shaking it off. I'm not huge on taking medicine if I think I can muddle through it. So far, so good. I hope everyone is feeling almost 100% by Sunday. We're going to get a family picture taken. I thought it would be a good idea to get one before Charlie is no longer an infant!
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| Before that nasty bug took over... |
On Monday, Rachel will be going into the hospital to have her tonsils and adenoids removed in the hopes that it will help her sleep better. She's always had some sleep apnea but over the last 2 months it's gotten much worse to where she is constantly tossing and turning throughout the night. You can hear her banging her head and legs against the bars as she tries to find a position that allows her to breath better. It's terrible. Her ENT said that on a scale of 0-4 (4 meaning the tonsils touch), Rachel's are a 3. I'm looking forward to her being more comfortable at night and sleeping better, but I hate that we have to put her through this. It already is killing me thinking about her being in pain.
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